First off I want to apologize for being lazy and not writing for so long. It's just been so busy with all my company that is here! Since Nana came snd left I had my cousin Ale over for a week and our friend matt here through christmas. It was so nice seeing them! Christmas was amazing. travis arrived on christmas eve and my apartment was all decorated for the holiday :) I think my mom and bucha would be proud :D For christmas there was me, cass, matt and trav. I'm so grateful that they were able to come and spend time with us...that was the best present i could have asked for. Matt left on the 26th and Chelsea and Big Tam came the next day on the 27th which was Cassidy's birthday :) We went to Outback steakhouse for his birthday. Coincedentally, Chelsea's bf lives in Dallas so he drove down to meet up with us and chels; He will be here until the 5th, which is when she leaves. To make things even better my friend from middle school, Contessa, just arrived last night to spend a week here! I havent seen her in a while and I'm soooo happy she is here!!! I'm so lucky to have family and friends here with me through the holidays. sofar we have had a lot of fun just spending time with each other and making each other laugh. I wish they would all move to houston!
So believe it or not yesterday I made 100 days since my transplant. I remember being in the hospital the first night and at 4:00 am they started my chemotherapy. I remember thinking that this was only day -6 and I have no idea how I was going to make it to 100. Through the exhausting days of the transplant and then going everyday to get magnesium transfusions, I couldn't have done it without all my support and family that has been here through the mess of it all. I am so fortunate that I had someone by my side everyday since I was diagnosed. I'm already going towards 7 months since I was diagnosed...it seems so long ago but at the same time time has been kind and passed quickly. Yesterday we all slept in and me, trav and tam went to MDA to get my CVC changed and re-stitched because the new stitching that was done last week came out. My doc still wants to keep my CVC in until it's clear that i won't need any transfusions...well i don't think i need it because it's been 2 weeks since my last mag transfusion and my mag leves are normal now (thanks to the 10 pills of 500 mg mag i take everyday). hopefully next week they will decide to take it out. anyways, the catheter nurse had to restitch all three of my stitches and it was really sore for the rest of the day. We all went to the Fine Arts museum and while trav and tam went to the King Tut showing, me, chels and drew checked out the rest of the museum and all their paintings. It was great to go there again but I was definitely sore from walking around for a couple of hours haha. Tam then made a cake for me and decorated it :D I think i'll have some for breakfast today hehehe. Unfortunatly they leave tomorrow at noon and i'm already missing them even though they haven't left! I hate it when they go :( but i am SO THANKFUL for having them here. all of them have been the best present i could have asked for for christmas :D
some other good news: on day 90 they did a bone marrow aspiration and found no blast cells or leukemic cells in my marrow :D :D My doc said i'm pretty much good to go once they know for sure that i won't need any magnesium.
well i hope you all had an amazing christmas and have a fantastic new year! I am so lucky that i am alive to be spending it with my family and friends. i love you all!
-Savannah
Friday, December 30, 2011
Wednesday, December 7, 2011
wake up. shuttle to mda, magnesium 3 hrs, shuttle home, sleep, and repeat
hello world. sorry it has almost been a month since i've written! I got into a little funk because of my repetitous days going back and forth to MDA EVERYDAY. argh. its exhausting waking up early everyday, lugging around 2-3 bags, waiting to get blood drawn (wait time varies between 10min- 1 hour), going to the ambulatory treatment center and waiting another 1-2 hours, going to a bed and getting magnesium for 3 hours, then going up to visiting my friend Lori who in an inpatient right now and I'm trying to give her my support since she has none, then catching the shuttle back home around 4 or 5 pm and crashing on the couch. and repeat for the next day. i don't even have weekends off. in fact, my first day off of fluids ever is tomorrow and guess what? i still have to come to MDA for a survivor follow-up visit and an eye appointment. dang it. at least i get to sleep in a litte bit.
so bucha was here for 3 weeks right before my mom left to go back to Kauai. It was sad to see my mom go but happy to have bucha here with me. she taught me how to knit and i helped her make a couple pairs of the bedroom slippers we have for sale on my store. it was so great having her here and her time with me just flew by way too fast.
i was alone for 4 days before Nana arrived in town. it was pretty shocking to have no one here with me (cassidy is usually off at work) and I started to have a lot of anxiety over it. luckily nana came and she has been taking good care of me (she says hello :)). I'm on day 78! Today is also nana's husband's birthday; he would be 78 (ironically) today...we all love and miss him sooooo much! Nana has been thrilled to be here and enjoys spending time with me (as i do her).
Today we went christmas tree shopping with my friend kelly. we all decided an artificial tree would be the smartest thing for me to get so we headed off to hobby lobby in search of something good. unfortunately even with everything 50% off they were all too expensive. we hopped over to lowes and we found a perfect 7 ft tree with pine cones and berries on it for $127! perfect! that is nana's christmas gift for me this year and i appreciate it so much! a very nice man offered to bring it to kelly's SUV for us which was very sweet because it's in a big box. I'm very excited about decorating it.
my cousin Ale and our friend Matt is coming to town next friday. me and cassidy are very excited to have our friends visit! I can't wait for travis, big tam and chelsea to come too. also my friends contessa and kainoa might be making a visit as well! it's going to be busy but with people i love and care about :D
my dad was here last weekend and we spent time with jan and janet and of course ate good food. my cousin John is here this week for work so we had lunch with him yesterday and will see him again tomorrow.
OH! i really had meant to right a blog about thanksgiving...so here is the cliff notes version:
nana arrived the night before thanksgiving; since angel and tom (from austin) wanted to go to the thanksgiving football game (UT vs T A&M) we went over to Tiffany's for burgers and football on thanksgiving. we met josh's parents who are from oklahoma.
the next day was our t-day and i was stuck at MDA all day. we didn't get done until about 4 or 5pm. cassidy worked until 6 so we were planning on going over to Tiffany's as soon as we all got home. Tiffany, josh and his mom cooked all day and made an amazing meal. unfortunately my new medication killed my appetite and i only could eat a child's portion of delicious food. we all went around the table and said what we were thankful for...
I just want to say that i am SO thankful to have the most AMAZING support group anyone could ever ask for. I am thankful for my friends and family who have been by me this whole 6 months and helping me keep positive through this experience. I have met multiple people who's families don't care about them and find them an inconvience. i am trying to spend my time with Lori who doesn't really have anyone sit by her side all day and just give her company like I had the ENTIRE time i was in the hospital. I am thankful to be alive and healthy and getting through my transplant with no problems. i love everyone so much and i don't know how i could have gotten through this without you all. you have given me the strength i needed to go through this with my head held high. I'm almost done and in 3 more months i'll be able to work and volunteer again. I can't wait :) thank you for your love and support...know that i appreciate it everyday.
love you all,
-savy
so bucha was here for 3 weeks right before my mom left to go back to Kauai. It was sad to see my mom go but happy to have bucha here with me. she taught me how to knit and i helped her make a couple pairs of the bedroom slippers we have for sale on my store. it was so great having her here and her time with me just flew by way too fast.
i was alone for 4 days before Nana arrived in town. it was pretty shocking to have no one here with me (cassidy is usually off at work) and I started to have a lot of anxiety over it. luckily nana came and she has been taking good care of me (she says hello :)). I'm on day 78! Today is also nana's husband's birthday; he would be 78 (ironically) today...we all love and miss him sooooo much! Nana has been thrilled to be here and enjoys spending time with me (as i do her).
Today we went christmas tree shopping with my friend kelly. we all decided an artificial tree would be the smartest thing for me to get so we headed off to hobby lobby in search of something good. unfortunately even with everything 50% off they were all too expensive. we hopped over to lowes and we found a perfect 7 ft tree with pine cones and berries on it for $127! perfect! that is nana's christmas gift for me this year and i appreciate it so much! a very nice man offered to bring it to kelly's SUV for us which was very sweet because it's in a big box. I'm very excited about decorating it.
my cousin Ale and our friend Matt is coming to town next friday. me and cassidy are very excited to have our friends visit! I can't wait for travis, big tam and chelsea to come too. also my friends contessa and kainoa might be making a visit as well! it's going to be busy but with people i love and care about :D
my dad was here last weekend and we spent time with jan and janet and of course ate good food. my cousin John is here this week for work so we had lunch with him yesterday and will see him again tomorrow.
OH! i really had meant to right a blog about thanksgiving...so here is the cliff notes version:
nana arrived the night before thanksgiving; since angel and tom (from austin) wanted to go to the thanksgiving football game (UT vs T A&M) we went over to Tiffany's for burgers and football on thanksgiving. we met josh's parents who are from oklahoma.
the next day was our t-day and i was stuck at MDA all day. we didn't get done until about 4 or 5pm. cassidy worked until 6 so we were planning on going over to Tiffany's as soon as we all got home. Tiffany, josh and his mom cooked all day and made an amazing meal. unfortunately my new medication killed my appetite and i only could eat a child's portion of delicious food. we all went around the table and said what we were thankful for...
I just want to say that i am SO thankful to have the most AMAZING support group anyone could ever ask for. I am thankful for my friends and family who have been by me this whole 6 months and helping me keep positive through this experience. I have met multiple people who's families don't care about them and find them an inconvience. i am trying to spend my time with Lori who doesn't really have anyone sit by her side all day and just give her company like I had the ENTIRE time i was in the hospital. I am thankful to be alive and healthy and getting through my transplant with no problems. i love everyone so much and i don't know how i could have gotten through this without you all. you have given me the strength i needed to go through this with my head held high. I'm almost done and in 3 more months i'll be able to work and volunteer again. I can't wait :) thank you for your love and support...know that i appreciate it everyday.
love you all,
-savy
Thursday, November 10, 2011
Half way there!
Can you believe it?! yesterday was DAY 50! It's crazy to think how much I've been through to get to day 50.
So some things have changed since my last update...my momma has left me and went back home to Kauai yesterday :( she will be missed! I am so thankful to have had her help thoughout this whole journey of mine and I couldn't thank her enough for helping me out. She has done so much for me that all I hope is that my recovery doesn't give her anymore stress! Her place was taken by her mom, Bucha, who will be here for 3 weeks. i am so grateful to get to spend time with her! I don't get to see her very often so what better than to spend time with each other at the hospital stuck in a little room for 3 hours. :) She has already taught me how to knit so I am helping her make slippers for the store! I have to say...I'm pretty damn good at it haha. I just take a lot longer to knit than Bucha so be patient! The slippers will get done...one day. :P
My days at MDA have gone back to 7 days a week instead of 3 because my insurance doesn't cover home health care which is what I need to do my fluids at home. Yes, it is A LOT cheaper to do fluids at home for the insurance company but apparently that doesn't matter. SOOOO LAME! This week has already worn me out and it's only thursday...with no end in sight! In order for me to not come into the hospital everyday I have to be off the fluids completely. The doc is having me increase my magnesium intake more so that I can become less dependent on the fluids here. Bucha asked me why I needed the magnesium and so here is my educated answer for her and anyone else who was wondering the same thing:
Magnesium is the 11th most abundant element (by mass) in the human body. The tacrolimus drug (prograft drug that keeps mine and travy's cells civilized and not start a war against each other) greatly depletes my levels of magnesium which is why I have to come in everyday for fluids (magnesium sulfate). Magnesium is important and essential to all living cells, ATP (energy), DNA and RNA production. Magnesium is also very important to hundreds of enzymes in the body (which are needed for cells, proteins and the like to function). So as you can see magnesium is quite needed for my survival.
Yesterday was EXHAUSTING. It's amazing how just being at MDA all day can wear you out. Me and Bucha got up at 6 am to get ready and head to the hospital at 7 am. I got my labs drawn and we proceeded to the ambulatory treatment center (ATC) where I get my fluids at 8 am. We got a room quicker than usual (sometimes we wait an hour or more for a room) and got settled in. We busted out the yarn and needles (where I would start my first pair of slippers) and I put on Charmed on my Ipad to watch. That part of the day went by fast; got done at 11:45 am and proceeded to go to my next appointment with the GYN which was at 1 pm. We took the shuttle over to Mays clinic and got some food and made it to my appointment early. We continued to knit as we waited for the nurse to bring me back into a room for my check up. I swear, I was knitting ALL DAY and I maybe got halfway done with ONE slipper. My arm was sore! haha.
anyways, I asked my GYN doctor what to expect with my fertility in the upcoming months. She told me that I won't be tested for fertility until 1 year after my transplant date; this is because my hormones will be out of whack for a while and if we want a clear answer of whether or not I'm fertile it's best to wait a year. She was happy to hear that I had three embryos frozen and I was delighted to see that she had a perfectly round belly of her own! She is due in december so I won't see her until after she gets back from maternity leave. I loved seeing her baby bump...it's so cute :)
After that appointment (which end at about 3 pm) we headed back to the main building to the infusion center to get my CVC bandage changed. Since mom left I need a nurse to change it for me or train bucha to do it...so the nurse walked through the steps of how to clean my CVC and put on a new bandage. I have to say...when he took off my old bandage he took off a layer of skin because when he cleaned that area with alcohol it wasn't the stiches that hurt or where the catheter inserts into my vein...it was my skin where the ahdhesive was that BURNED...oh good lord it burned so badly. My skin is still red and angry from where he pissed it off. owie :( By the way, we waited over an hour to be seen so we didn't go back until after 4 pm. After I was tortured and a new clean bandage was put on it was 5 pm and I was ready to be home. We had to wait 30 minutes for the shuttle to pick us up and didn't get home until 6 pm. We were at MDA for 10 hours!! AHHH!! After getting home me and bucha had to quickly run to the store to pick up more yarn and some groceries. My day officially ended at 7:45 pm...and I was beat. I hadn't eaten that much so I wasn't feeling well and I hated thinking that I was going to have to wake up at 6 am the next day and go back to MDA and do it all over again. Luckily today won't be as crazy; no labs, just fluids and then i'm painting afterwards. Bucha stayed home today because she might be coming down with a cold (of all times! she could have waited until after her visit to get sick) so it's best we not be stuck in a small room together for 3 hours.
Last weekend me and cassidy drove an hour down to Galveston to visit my friend Lori who is getting treated at MDA for a different type of leukemia. We all went to the 3rd largest bike rally in the US(the largest weekend rally) and checked out the thousands of bikes that they had there! It was crazy busy with people, shops, food, beer and bikes. Cassidy was kind enough to tell me lots of info about the majority of the bikes there :P I always wonder where he keeps all this info stored in his head...anyways it was a fun day :)
Well I think that's enough for now; my bladder is full from all this liquid they pump into me :D
love you all and please keep checking out the store for more fun items to buy!
-savy
So some things have changed since my last update...my momma has left me and went back home to Kauai yesterday :( she will be missed! I am so thankful to have had her help thoughout this whole journey of mine and I couldn't thank her enough for helping me out. She has done so much for me that all I hope is that my recovery doesn't give her anymore stress! Her place was taken by her mom, Bucha, who will be here for 3 weeks. i am so grateful to get to spend time with her! I don't get to see her very often so what better than to spend time with each other at the hospital stuck in a little room for 3 hours. :) She has already taught me how to knit so I am helping her make slippers for the store! I have to say...I'm pretty damn good at it haha. I just take a lot longer to knit than Bucha so be patient! The slippers will get done...one day. :P
My days at MDA have gone back to 7 days a week instead of 3 because my insurance doesn't cover home health care which is what I need to do my fluids at home. Yes, it is A LOT cheaper to do fluids at home for the insurance company but apparently that doesn't matter. SOOOO LAME! This week has already worn me out and it's only thursday...with no end in sight! In order for me to not come into the hospital everyday I have to be off the fluids completely. The doc is having me increase my magnesium intake more so that I can become less dependent on the fluids here. Bucha asked me why I needed the magnesium and so here is my educated answer for her and anyone else who was wondering the same thing:
Magnesium is the 11th most abundant element (by mass) in the human body. The tacrolimus drug (prograft drug that keeps mine and travy's cells civilized and not start a war against each other) greatly depletes my levels of magnesium which is why I have to come in everyday for fluids (magnesium sulfate). Magnesium is important and essential to all living cells, ATP (energy), DNA and RNA production. Magnesium is also very important to hundreds of enzymes in the body (which are needed for cells, proteins and the like to function). So as you can see magnesium is quite needed for my survival.
Yesterday was EXHAUSTING. It's amazing how just being at MDA all day can wear you out. Me and Bucha got up at 6 am to get ready and head to the hospital at 7 am. I got my labs drawn and we proceeded to the ambulatory treatment center (ATC) where I get my fluids at 8 am. We got a room quicker than usual (sometimes we wait an hour or more for a room) and got settled in. We busted out the yarn and needles (where I would start my first pair of slippers) and I put on Charmed on my Ipad to watch. That part of the day went by fast; got done at 11:45 am and proceeded to go to my next appointment with the GYN which was at 1 pm. We took the shuttle over to Mays clinic and got some food and made it to my appointment early. We continued to knit as we waited for the nurse to bring me back into a room for my check up. I swear, I was knitting ALL DAY and I maybe got halfway done with ONE slipper. My arm was sore! haha.
anyways, I asked my GYN doctor what to expect with my fertility in the upcoming months. She told me that I won't be tested for fertility until 1 year after my transplant date; this is because my hormones will be out of whack for a while and if we want a clear answer of whether or not I'm fertile it's best to wait a year. She was happy to hear that I had three embryos frozen and I was delighted to see that she had a perfectly round belly of her own! She is due in december so I won't see her until after she gets back from maternity leave. I loved seeing her baby bump...it's so cute :)
After that appointment (which end at about 3 pm) we headed back to the main building to the infusion center to get my CVC bandage changed. Since mom left I need a nurse to change it for me or train bucha to do it...so the nurse walked through the steps of how to clean my CVC and put on a new bandage. I have to say...when he took off my old bandage he took off a layer of skin because when he cleaned that area with alcohol it wasn't the stiches that hurt or where the catheter inserts into my vein...it was my skin where the ahdhesive was that BURNED...oh good lord it burned so badly. My skin is still red and angry from where he pissed it off. owie :( By the way, we waited over an hour to be seen so we didn't go back until after 4 pm. After I was tortured and a new clean bandage was put on it was 5 pm and I was ready to be home. We had to wait 30 minutes for the shuttle to pick us up and didn't get home until 6 pm. We were at MDA for 10 hours!! AHHH!! After getting home me and bucha had to quickly run to the store to pick up more yarn and some groceries. My day officially ended at 7:45 pm...and I was beat. I hadn't eaten that much so I wasn't feeling well and I hated thinking that I was going to have to wake up at 6 am the next day and go back to MDA and do it all over again. Luckily today won't be as crazy; no labs, just fluids and then i'm painting afterwards. Bucha stayed home today because she might be coming down with a cold (of all times! she could have waited until after her visit to get sick) so it's best we not be stuck in a small room together for 3 hours.
Last weekend me and cassidy drove an hour down to Galveston to visit my friend Lori who is getting treated at MDA for a different type of leukemia. We all went to the 3rd largest bike rally in the US(the largest weekend rally) and checked out the thousands of bikes that they had there! It was crazy busy with people, shops, food, beer and bikes. Cassidy was kind enough to tell me lots of info about the majority of the bikes there :P I always wonder where he keeps all this info stored in his head...anyways it was a fun day :)
Well I think that's enough for now; my bladder is full from all this liquid they pump into me :D
love you all and please keep checking out the store for more fun items to buy!
-savy
Sunday, October 30, 2011
I see a clearing ahead :)
SOOOOOOOOOO......good news! well I haven't found out what percentage my blood is of travy's cells BUT the doctors told me that the mutated gene that was the start of the leukemia was no longer in my marrow! so! hopefully once my body has been completely taken over by travis I will be 100% in the clear for being cancer-free :D yay! cause believe me...i'd rather NOT go through this again.
I had a WONDERFUL day yesterday! My first real outing since getting out of the hospital :) Cassidy took me to the Renaissance Festival! I believe it is the biggest festival in the US but you can google it yourself and check on that if you think I'm wrong. It was HUGE!! there were so many stages and houses and shops and people! A lot of people were in costume and since it was All Hallows Eve themed there were both medieval costumes and halloween costumes walking about. It was very fun! I ate part of a turkey leg, iced cream from germany and funnel cake (i couldn't resist). It got me and cassidy talking about one day getting real costumes and acting the part...some people go and remain in character the whole time they are there. I think it would be a lot of fun to wear those beautiful gowns and corsets and have BIG hair. Cassidy, of course, would be my knight :) or gladiator...we haven't decided yet :) depends on how comfortable he is walking around in just a piece of cloth and yelling a lot in anger at being a slave (my slave :D). We saw a jousting show and a show of illusions. We also got to see a lady blow glass and make a beautiful glass vase. We walked around for 6 hours before I called it quits; my legs and feet were hurting! I can't believe cass does this everyday for 9 hours! I give him props for being able to be on his feet and not collapse at work...if it were me I'd end up sitting on a table..all day.
Tonight me and the neighbors are going to put some semi-scary (but mostly NOT scary) movies in theme for the holiday. Tomorrow we are going to Jan and Janet's to help pass out candy and hang out :) It going to suck not dressing up this year and going out and about but I'm probably not missing much.
well I hope you all have a safe and scary halloween! go trick or treating for me! :P I was hoping to dress up as Megamind (google it) since I'm bald but having no job and no money and no sewing skills makes it difficult to put together a costume. I hope to see pictures of good costumes! :) i love you all!
-sav
I had a WONDERFUL day yesterday! My first real outing since getting out of the hospital :) Cassidy took me to the Renaissance Festival! I believe it is the biggest festival in the US but you can google it yourself and check on that if you think I'm wrong. It was HUGE!! there were so many stages and houses and shops and people! A lot of people were in costume and since it was All Hallows Eve themed there were both medieval costumes and halloween costumes walking about. It was very fun! I ate part of a turkey leg, iced cream from germany and funnel cake (i couldn't resist). It got me and cassidy talking about one day getting real costumes and acting the part...some people go and remain in character the whole time they are there. I think it would be a lot of fun to wear those beautiful gowns and corsets and have BIG hair. Cassidy, of course, would be my knight :) or gladiator...we haven't decided yet :) depends on how comfortable he is walking around in just a piece of cloth and yelling a lot in anger at being a slave (my slave :D). We saw a jousting show and a show of illusions. We also got to see a lady blow glass and make a beautiful glass vase. We walked around for 6 hours before I called it quits; my legs and feet were hurting! I can't believe cass does this everyday for 9 hours! I give him props for being able to be on his feet and not collapse at work...if it were me I'd end up sitting on a table..all day.
Tonight me and the neighbors are going to put some semi-scary (but mostly NOT scary) movies in theme for the holiday. Tomorrow we are going to Jan and Janet's to help pass out candy and hang out :) It going to suck not dressing up this year and going out and about but I'm probably not missing much.
well I hope you all have a safe and scary halloween! go trick or treating for me! :P I was hoping to dress up as Megamind (google it) since I'm bald but having no job and no money and no sewing skills makes it difficult to put together a costume. I hope to see pictures of good costumes! :) i love you all!
-sav
Wednesday, October 26, 2011
Fluids anyone?
Oh the days are starting to get repetitive. Thankfully MDA has not only begun to lessen the amount of fluids I get at one point but they are only having me come into the hospital 3 times a week. That gives me 4 days at home to sit on my couch and...get fluids. Let's just say this was getting old for me the first WEEK they had me doing this. Today is my first day of getting a Liter of Magnesium sulfate instead of the oringinal liter and a half...for those who are wondering it's still a lot of liquid and it still takes about 3 hours to pump into me. argh.
Last weekend was a good weekend. Our good friend Terry came down from Utah to visit for the weekend; he treated me to a massage (it was more relaxing than anything beneficial for my muscles..but it was a nice change and it felt good to relax) and hung out with our neighbors Melissa and Daniel. Me and Cass carved pumpkins with Melissa, Daniel and some of their friends that live in our apartment complex. It was nice meeting new people and it was fun getting all the pumpkin out :) Cass did the carving while I held the paper that had the picture of what our jack-o-lantern was going to become...a cat with wings :D It came out pretty good actually (the cat was a little too skinny) and Cass was a perfectionist to make it look clean cut. It was super cool to look at at night with a candle in it but by a couple of days it had started to wilt :( It didn't even make it to halloween, the poor kitty. Afterwards we all spent time with mom and Terry and told stories and got to know each other a little bit more.
I exercised for the first time since the transplant the other day with Cassidy...I went on the treadmill and actually ran a little bit (and by a little bit I really do mean a little bit haha..my leg strength is definitely on the low side). It definitely felt good to move and I could tell my body liked it as well. I've been getting really tight in my upper back and shoulders from my lack of sustaining a good posture and not stabilizing like I should be...I've definitely started to get better though now that I have the energy to sit up and not slouch. I have an appointment today with a physcial therapist who will do an evaluation and give me a list of things to do at home to get my strength back....even though I know a lot of exercises to help me out I wanted to see a PT just to see what she'll tell me to do and get some experience of being the patient and not the PT. Also if they have a nice gym that I can work out in then it's another bonus for me to be there :D. We shall see how that goes!
I got the results from my bone marrow biopsy back. They were checking to see if there was any leukemic cells and (insert drum roll) it was all clear! So far so good on remaining in remission :) Hopefully travy's cells kick the leukemia cells' butts and I'll never have to do chemotherapy EVER again. It's going to be months before my body is back to normal after this last crazy dose of chemo they gave me. It killed my pigment cells in my skin making it look brown and now it's starting to come off, making me look all spotty and diseased....yuck. I also probably won't start getting my hair back until December or January. I wonder what color it will be and what it will look like when it comes back...what do you think? We can put some wagers down and make this interesting! :P
I should find out next week what percentage of Travy's cells are in my body vs. my cells. By 100 days (we are at 36) it should be 100% taken over by travy cells.
If you go to https://www.wepay.com/donate/158349 you can make a donation or visit my store at https://www.wepay.com/shop/savy_s_fight_like_a_girl_store and buy hand made items (perfect for the holidays); all the proceeds will go towards my medical bills tbat are slowly piling up. This whole not being able to work thing doesn't make it easy to pay them off. Any help will be GREATLY appreciated with love from me and my family. I already am in debt to you all for just taking the time to read my silly blogs. You all have done so much already...I hope you know that I am thankful to have your support and positive energy being sent my way.
I hope you all have a happy and safe halloween!
with love,
sav
Last weekend was a good weekend. Our good friend Terry came down from Utah to visit for the weekend; he treated me to a massage (it was more relaxing than anything beneficial for my muscles..but it was a nice change and it felt good to relax) and hung out with our neighbors Melissa and Daniel. Me and Cass carved pumpkins with Melissa, Daniel and some of their friends that live in our apartment complex. It was nice meeting new people and it was fun getting all the pumpkin out :) Cass did the carving while I held the paper that had the picture of what our jack-o-lantern was going to become...a cat with wings :D It came out pretty good actually (the cat was a little too skinny) and Cass was a perfectionist to make it look clean cut. It was super cool to look at at night with a candle in it but by a couple of days it had started to wilt :( It didn't even make it to halloween, the poor kitty. Afterwards we all spent time with mom and Terry and told stories and got to know each other a little bit more.
I exercised for the first time since the transplant the other day with Cassidy...I went on the treadmill and actually ran a little bit (and by a little bit I really do mean a little bit haha..my leg strength is definitely on the low side). It definitely felt good to move and I could tell my body liked it as well. I've been getting really tight in my upper back and shoulders from my lack of sustaining a good posture and not stabilizing like I should be...I've definitely started to get better though now that I have the energy to sit up and not slouch. I have an appointment today with a physcial therapist who will do an evaluation and give me a list of things to do at home to get my strength back....even though I know a lot of exercises to help me out I wanted to see a PT just to see what she'll tell me to do and get some experience of being the patient and not the PT. Also if they have a nice gym that I can work out in then it's another bonus for me to be there :D. We shall see how that goes!
I got the results from my bone marrow biopsy back. They were checking to see if there was any leukemic cells and (insert drum roll) it was all clear! So far so good on remaining in remission :) Hopefully travy's cells kick the leukemia cells' butts and I'll never have to do chemotherapy EVER again. It's going to be months before my body is back to normal after this last crazy dose of chemo they gave me. It killed my pigment cells in my skin making it look brown and now it's starting to come off, making me look all spotty and diseased....yuck. I also probably won't start getting my hair back until December or January. I wonder what color it will be and what it will look like when it comes back...what do you think? We can put some wagers down and make this interesting! :P
I should find out next week what percentage of Travy's cells are in my body vs. my cells. By 100 days (we are at 36) it should be 100% taken over by travy cells.
If you go to https://www.wepay.com/donate/158349 you can make a donation or visit my store at https://www.wepay.com/shop/savy_s_fight_like_a_girl_store and buy hand made items (perfect for the holidays); all the proceeds will go towards my medical bills tbat are slowly piling up. This whole not being able to work thing doesn't make it easy to pay them off. Any help will be GREATLY appreciated with love from me and my family. I already am in debt to you all for just taking the time to read my silly blogs. You all have done so much already...I hope you know that I am thankful to have your support and positive energy being sent my way.
I hope you all have a happy and safe halloween!
with love,
sav
Tuesday, October 18, 2011
Back in buisness
Sorry everyone for falling off the face of the earth for a while...
let's recap:
I got out of the hospital after being there for only 25 days total (who knew travy's stem cells were such over achievers?) on Friday the 7th. Though I was ready to be done with getting woken up throughout the night and being back at home, I was definitely not jumping out of bed that day. I was feeling low of energy and not in the best of moods considering I was leaving the hospital. I got home and for the next two days I pretty much didn't move from my spot on the couch. My mouth sores had gone away but I had no appetite and if I did eat anything I threw it right back up. So it wasn't easy coming home. Luckily my nausea didn't stay with me very long so keeping food down wasn't a problem anymore...eating it was. When I got chemotherapy it proceeded to wipe out all of my taste buds. If I showed you my tongue it would look very smooth...because I have no taste buds! So even though I could hold food down eating it was a whole other chore to do! First everything I ate tasted like cardboard. I stil didnt have much of an appetite so it was really easy for me to take a bite of food and say "all done". Next, everything just tasted horrible. No matter what I ate I just tasted sour disgusting food and after one bite I would say "all done". It sucked because my dad was here and he made all his delicious food that normally was really good but currently no bueno for my taste buds. So for days and days I was maybe eating 300 calories a day...not good :/ In the hospital I managed to keep my weight at a good 118 lbs. With the mouth sores the previous week preventing me from eating much and then my taste buds keeping me from eating I quickly dropped down to 110 lbs. My energy was low and soon my blood pressure started to drop off.
Once I was out of the hospital I was scheduled to go right back into the clinic the next week and do blood draws and 1.5L over 3 1/2 hours of magnesium sulfate. So lucky me, i get to leave the hospital just to come back and spend half my day here. We get to the clinic around 8 and I usually start my fluids around 9 or 10 am. I then lay in bed for the 3 1/2 hours and sleep, watch movies or...space out. I have done this everyday since being out of the hospital save for this past weekend where they let us take the fluids home and do them there. I need all of this fluid because the prograft drug I take is hard on the kidneys and decreases my magnesium a lot. I will need to do this for the majority of my 100 days while I am taking the prograft drug (tacrolimus). Hopefully I will only have to come into the hospital on mondays, wednesdays and fridays and have the rest of the days at home to do fluids...that would be much nicer to do!
So back to my blood pressure. The nurses always take my vitals every morning and since I've been out of the hospital I noticed that I am out of breath just standing up, let alone walking around. I get very lightheaded when I sit up and stand up but luckily I never got too dizzy and felt like falling. As I got my blood pressure taken I noticed that everyday it was going down....90/60...84/55...80/50...92/66...then 73/40. 73/40?!!? If you don't understand what that means a normal blood pressure is 120/80. 73/40 is NOWHERE near that AT ALL. I was surprised I was still walking around! (The nurse had to hold my arm and walk me back because they don't want me to "drop" as they say here) So that was most likely caused from not drinking a gallon of water a day. It is hard to be drinking water or the likes constantly all day. If I didn't get rid of my cancer yet I'll just drown it in fluids. I got prescribed blood pressure medicine (yay more medicine to take with the handful that I'm taking already) and it seems to be helping already. I hit the 100's yesterday!
This past weekend I started to eat more and get more of my appetite back. I think eating (or lack there of) really affected my blood pressure too...so I'm happy to be eating again. Things still taste a little weird but it's manageable. I am up to 114 lbs which was gained from eating sugary snack foods that I would normally never eat but I have to now to gain weight. Cassidy told me "just eat everything you tell me not to eat". Haha. It is really hard for me to do that! I don't know how people eat this stuff everyday! It's hard cause I don't snack a lot and eat only when I'm hungry or remember to eat...so I am trying to train myself to eat throughout the day. :\ gotta keep trying
anyways, I just wanted to let you all know that I'm still alive and doing well. otherthan the blood pressure I have been doing great with my recovery; no fevers, no rashes, no nausea! I will update more often now that I finally have some energy and motivation back in me. I hope you all are doing well and keep in touch!
-sav
let's recap:
I got out of the hospital after being there for only 25 days total (who knew travy's stem cells were such over achievers?) on Friday the 7th. Though I was ready to be done with getting woken up throughout the night and being back at home, I was definitely not jumping out of bed that day. I was feeling low of energy and not in the best of moods considering I was leaving the hospital. I got home and for the next two days I pretty much didn't move from my spot on the couch. My mouth sores had gone away but I had no appetite and if I did eat anything I threw it right back up. So it wasn't easy coming home. Luckily my nausea didn't stay with me very long so keeping food down wasn't a problem anymore...eating it was. When I got chemotherapy it proceeded to wipe out all of my taste buds. If I showed you my tongue it would look very smooth...because I have no taste buds! So even though I could hold food down eating it was a whole other chore to do! First everything I ate tasted like cardboard. I stil didnt have much of an appetite so it was really easy for me to take a bite of food and say "all done". Next, everything just tasted horrible. No matter what I ate I just tasted sour disgusting food and after one bite I would say "all done". It sucked because my dad was here and he made all his delicious food that normally was really good but currently no bueno for my taste buds. So for days and days I was maybe eating 300 calories a day...not good :/ In the hospital I managed to keep my weight at a good 118 lbs. With the mouth sores the previous week preventing me from eating much and then my taste buds keeping me from eating I quickly dropped down to 110 lbs. My energy was low and soon my blood pressure started to drop off.
Once I was out of the hospital I was scheduled to go right back into the clinic the next week and do blood draws and 1.5L over 3 1/2 hours of magnesium sulfate. So lucky me, i get to leave the hospital just to come back and spend half my day here. We get to the clinic around 8 and I usually start my fluids around 9 or 10 am. I then lay in bed for the 3 1/2 hours and sleep, watch movies or...space out. I have done this everyday since being out of the hospital save for this past weekend where they let us take the fluids home and do them there. I need all of this fluid because the prograft drug I take is hard on the kidneys and decreases my magnesium a lot. I will need to do this for the majority of my 100 days while I am taking the prograft drug (tacrolimus). Hopefully I will only have to come into the hospital on mondays, wednesdays and fridays and have the rest of the days at home to do fluids...that would be much nicer to do!
So back to my blood pressure. The nurses always take my vitals every morning and since I've been out of the hospital I noticed that I am out of breath just standing up, let alone walking around. I get very lightheaded when I sit up and stand up but luckily I never got too dizzy and felt like falling. As I got my blood pressure taken I noticed that everyday it was going down....90/60...84/55...80/50...92/66...then 73/40. 73/40?!!? If you don't understand what that means a normal blood pressure is 120/80. 73/40 is NOWHERE near that AT ALL. I was surprised I was still walking around! (The nurse had to hold my arm and walk me back because they don't want me to "drop" as they say here) So that was most likely caused from not drinking a gallon of water a day. It is hard to be drinking water or the likes constantly all day. If I didn't get rid of my cancer yet I'll just drown it in fluids. I got prescribed blood pressure medicine (yay more medicine to take with the handful that I'm taking already) and it seems to be helping already. I hit the 100's yesterday!
This past weekend I started to eat more and get more of my appetite back. I think eating (or lack there of) really affected my blood pressure too...so I'm happy to be eating again. Things still taste a little weird but it's manageable. I am up to 114 lbs which was gained from eating sugary snack foods that I would normally never eat but I have to now to gain weight. Cassidy told me "just eat everything you tell me not to eat". Haha. It is really hard for me to do that! I don't know how people eat this stuff everyday! It's hard cause I don't snack a lot and eat only when I'm hungry or remember to eat...so I am trying to train myself to eat throughout the day. :\ gotta keep trying
anyways, I just wanted to let you all know that I'm still alive and doing well. otherthan the blood pressure I have been doing great with my recovery; no fevers, no rashes, no nausea! I will update more often now that I finally have some energy and motivation back in me. I hope you all are doing well and keep in touch!
-sav
Wednesday, October 5, 2011
Thank god the light at the end of the tunnel isn't a train
Day +15!
So the last couple of days have been spent with my dad and I have had a great time with him here at MDA. Yesterday morning Nana left to go back home to Florida; we had a fun 10 days together and I can't believe how fast the time went by. I am thankful to have had the time spent with her and I can't wait to see her again in November :)
On the way to dropping Nana off at the airport Dad took a load of stuff from my room back to my apartment so that there is less to move when it is time to move out of the hospital. We were able to do that again today and slowly my room is looking less like my room and more like a plain hospital room. After the errands in the morning I went to go paint with Ian in the family lounge and work on the piece i am currently working on. I was there for a little over an hour before my nurse handed me my medicine that I had to take; it was in liquid form because my throat was too sore to take regular pills. It was almost time to wrap up my session anyways so as my dad started to clean up I quickly took my dose of medicine. I was feeling a little queasy prior to taking the medicine because it had been some time since I had eaten and that must have been enough to trigger something in my stomach because suddenly I wasn't feeling so good.
Let's just focus for a minute on my location; I am in the back of the family lounge with a table in front of me and to both sides of me. I am connected to my "tree" which holds my IV and there are a lot of chairs around me. The nearest sink or trash can is at the front of the room, about 20 feet away. Now back to not feeling so good.
I put my hand up to my mouth as my body jerked a little bit. with wide eyes I frantically look at my dad who realizes quickly that we need to move..fast. He has to back up and help move my tree to help get me out of my tight spot or this could end up messy for everyone. I step around him as fast as i can and just as I feel my stomach contents start pooling in my hand I lean over the trash can and throw up everything that I possibly had in my stomach. Let's remember for a second that I still have throat and mouth sores and throwing up is NOT the most comfortable act I could be doing. After emptying my stomach and cleaning up my hand and face I look around to see if I had made a mess on the carpet or anywhere else. Surprisingly no one or thing got hit in this attack. I gathered my things and headed back to my room to change and freshen up (I had gotten a little bit on my pants :( ).
Once I was feeling better Dad and I decided to head to the barber shop that they have for the patients on floor 6 and look at their wigs that they have to offer for free for the patients. Each patient is given one wig of their liking and I was excited to try a new look. Their selection was small but I had an idea of what I wanted; a brunette wig. I tried on a few wigs while dad took pictures of them on my iphone. we quickly decided on a long haired brunette wig that dad says makes me look like Zooe Claire Deschanel. As I am talking to the lady to check me out Dad is talking to a woman who was there with her mom, and it was her mom who was about to start treatment here. The mom didn't want to get a wig but she didn't want the opportunity to go to waste so she asked me if I wanted to pick out another wig and the mom get it for me. It was a very sweet thing for her to do for me so I said yes and picked out a cute short haired brunette wig. I am very thankful for her to do that for me and I hope she does well with her treatment.
After walking away with 2 new wigs Dad and I walked down to Kim's place to hang out with Mary, the lady who runs the arcade room. We mostly talked story and watched my dad get beat by almost 100 points on basketball (Mary has way too much time on her hands and makes almost every shot) before leaving to go back up to my room. We ate some food and as we were settling down for bed we decided to watch The Tourist, which I had seen before but not my dad...I ended up sleeping through most of it anyways.
Today was a busy day again. My dad got some more stuffed packed up to take to the apartment. Since the car was at Jan and Janet's house he ran the two miles to their house to pick up the car and drive it to MDA, pick up the stuff that I watched in the lobby, drive to the apartment and drop everything off then drive the car back to Jan and Janet's, eat lunch and then finally walk back to MDA. While all this was happening a man came up to me and told me that his wife was allergic to nickel and he showed me this pretty bracelet and asked if I wanted it. I accepted it and put it on my wrist. I am very thankful for the nice people I seem to be surrounded with everyday.
My nurse from the 11th floor, Kelly, came over to hang out with me today. Since I had scheduled an art class with Ian she joined us at the top of MDA and we all talked story while I worked on my painting. We were there for around an hour before going back to my room. She left about 3, with plans on seeing me on Saturday at my place if I ended up getting out on Friday. It was very nice hanging out with her today. Since it was only 3, after I ate a couple pieces of pasta and headed down with dad to Kim's place. We invited another friend, Laurie, down to hang out with us. After a game of pool (I beat dad!) Laurie came down and all four of us (Mary was there) played the game Trouble. guess who won?...me! By then it was 5:30 and time to head back to my room for dinner.
I attempted to eat enchiladas...but after taking some medicine and drinking a lot of water everything decided to come up. So far I have not eaten even a half a plate of food. I am hoping to leave on Friday but if I do not eat then they cannot release me. I only used fentanyl once today so hopefully they will take me off of that completely. Tomorrow I will hopefully be able to eat and take all my pills so that they will let me go!
I am exhausted after these two days. I have been moving all day and now it is time for bed. I hope that the next time I write a post it will be at home but only time will tell. I will let you know what happens next. i love you and good night!
-Savy
p.s. just a few words to say how thankful i am that my journey through cancer has been a smooth and not too difficult of a journey. I know there are a lot of children and adults out there who are in a much more worse scenario than i am and I am so thankful for how my journey has gone. I hope that everyone I have met and seen gets better and recovers fully.
So the last couple of days have been spent with my dad and I have had a great time with him here at MDA. Yesterday morning Nana left to go back home to Florida; we had a fun 10 days together and I can't believe how fast the time went by. I am thankful to have had the time spent with her and I can't wait to see her again in November :)
On the way to dropping Nana off at the airport Dad took a load of stuff from my room back to my apartment so that there is less to move when it is time to move out of the hospital. We were able to do that again today and slowly my room is looking less like my room and more like a plain hospital room. After the errands in the morning I went to go paint with Ian in the family lounge and work on the piece i am currently working on. I was there for a little over an hour before my nurse handed me my medicine that I had to take; it was in liquid form because my throat was too sore to take regular pills. It was almost time to wrap up my session anyways so as my dad started to clean up I quickly took my dose of medicine. I was feeling a little queasy prior to taking the medicine because it had been some time since I had eaten and that must have been enough to trigger something in my stomach because suddenly I wasn't feeling so good.
Let's just focus for a minute on my location; I am in the back of the family lounge with a table in front of me and to both sides of me. I am connected to my "tree" which holds my IV and there are a lot of chairs around me. The nearest sink or trash can is at the front of the room, about 20 feet away. Now back to not feeling so good.
I put my hand up to my mouth as my body jerked a little bit. with wide eyes I frantically look at my dad who realizes quickly that we need to move..fast. He has to back up and help move my tree to help get me out of my tight spot or this could end up messy for everyone. I step around him as fast as i can and just as I feel my stomach contents start pooling in my hand I lean over the trash can and throw up everything that I possibly had in my stomach. Let's remember for a second that I still have throat and mouth sores and throwing up is NOT the most comfortable act I could be doing. After emptying my stomach and cleaning up my hand and face I look around to see if I had made a mess on the carpet or anywhere else. Surprisingly no one or thing got hit in this attack. I gathered my things and headed back to my room to change and freshen up (I had gotten a little bit on my pants :( ).
Once I was feeling better Dad and I decided to head to the barber shop that they have for the patients on floor 6 and look at their wigs that they have to offer for free for the patients. Each patient is given one wig of their liking and I was excited to try a new look. Their selection was small but I had an idea of what I wanted; a brunette wig. I tried on a few wigs while dad took pictures of them on my iphone. we quickly decided on a long haired brunette wig that dad says makes me look like Zooe Claire Deschanel. As I am talking to the lady to check me out Dad is talking to a woman who was there with her mom, and it was her mom who was about to start treatment here. The mom didn't want to get a wig but she didn't want the opportunity to go to waste so she asked me if I wanted to pick out another wig and the mom get it for me. It was a very sweet thing for her to do for me so I said yes and picked out a cute short haired brunette wig. I am very thankful for her to do that for me and I hope she does well with her treatment.
After walking away with 2 new wigs Dad and I walked down to Kim's place to hang out with Mary, the lady who runs the arcade room. We mostly talked story and watched my dad get beat by almost 100 points on basketball (Mary has way too much time on her hands and makes almost every shot) before leaving to go back up to my room. We ate some food and as we were settling down for bed we decided to watch The Tourist, which I had seen before but not my dad...I ended up sleeping through most of it anyways.
Today was a busy day again. My dad got some more stuffed packed up to take to the apartment. Since the car was at Jan and Janet's house he ran the two miles to their house to pick up the car and drive it to MDA, pick up the stuff that I watched in the lobby, drive to the apartment and drop everything off then drive the car back to Jan and Janet's, eat lunch and then finally walk back to MDA. While all this was happening a man came up to me and told me that his wife was allergic to nickel and he showed me this pretty bracelet and asked if I wanted it. I accepted it and put it on my wrist. I am very thankful for the nice people I seem to be surrounded with everyday.
My nurse from the 11th floor, Kelly, came over to hang out with me today. Since I had scheduled an art class with Ian she joined us at the top of MDA and we all talked story while I worked on my painting. We were there for around an hour before going back to my room. She left about 3, with plans on seeing me on Saturday at my place if I ended up getting out on Friday. It was very nice hanging out with her today. Since it was only 3, after I ate a couple pieces of pasta and headed down with dad to Kim's place. We invited another friend, Laurie, down to hang out with us. After a game of pool (I beat dad!) Laurie came down and all four of us (Mary was there) played the game Trouble. guess who won?...me! By then it was 5:30 and time to head back to my room for dinner.
I attempted to eat enchiladas...but after taking some medicine and drinking a lot of water everything decided to come up. So far I have not eaten even a half a plate of food. I am hoping to leave on Friday but if I do not eat then they cannot release me. I only used fentanyl once today so hopefully they will take me off of that completely. Tomorrow I will hopefully be able to eat and take all my pills so that they will let me go!
I am exhausted after these two days. I have been moving all day and now it is time for bed. I hope that the next time I write a post it will be at home but only time will tell. I will let you know what happens next. i love you and good night!
-Savy
p.s. just a few words to say how thankful i am that my journey through cancer has been a smooth and not too difficult of a journey. I know there are a lot of children and adults out there who are in a much more worse scenario than i am and I am so thankful for how my journey has gone. I hope that everyone I have met and seen gets better and recovers fully.
Monday, October 3, 2011
15?!?!?!?!
So last night Cassidy spent the night and we watched The Jungle Book!! I borrowed this movie cause i knew it was his favorite. i of course fell asleep watching it. Then, believe it or not, we slept in until 10 am! I only woke up like 3 times (for the nurses) but other than that I slept great! And the only reason I woke up at 10 was because 5 doctors barged into my room and woke me up. This time the doctor got to tell me the good news....which was that my WBC count jumped from 5.8 to 15! Holy Crap! So thanks to the nupagen i have been receiving my bone marrow was on overdrive to pump up my immune system. They stopped the shots and told me they will go down a bit to allow my RBC and platelets to come up too. My throat was feeling fine this morning and since I felt good they were convinced I could leave by Wednesday. This was all very exciting to hear! After the chat me and cass watched Evan Almighty :) Oh! my throat was feeling good enough to eat foot loop cereal today :) that really got my hopes up that i'm finally healing up!
Nana and Dad came over right when the movie ended and me cass decided to go for a walk. We all decided to walk up to the 24th floor and meet jan, janet and Evelyn. Evelyn was Jan's bestfriend in engineer school (and the only two girls AND the top two students in the class) and she was the one who connected us with jan and janet. Evelyn's daughter is looking at Rice University which is what brought them to houston today. It's nice being able to wander around on the different floors again :)
My nurse today instructed that my caregivers order me food every two hours to have me nibble on something. I need to link up my brain and stomach again and the only way to really do that is eat every few hours instead of a large meal. I don't get hunger signals and instead get nauseous when i don't eat. I think it's really important that my caregivers just order me food without asking what i want because I can't taste anything and have no appetite to eat anything. I sometimes hate having to talk about food and having to deal with eating because as the day went on i realized that I still can't eat real food because it hurts too much. it is very frustrating not being able to eat real food. so even though the doctor said i could probably leave by wednesday I don't think i am eating well enough and i am still dependent on fentanyl to keep me out of pain. I thought i could get rid of it by tomorrow but my pain in my throat and mouth came back and i had to use the fentanyl again. It of course made me tired and queazy and before I could eat anything i threw up :( me, nana and cass were going to go play bingo tonight but i ended up taking a nap and slept till 7:30 (bingo started at 7).
Nana leaves tomorrow morning :( Dad is taking over as caregiving and he said he is looking forward to our one on one time we will get :) we used to go on little dates together when i was real young; we would go to Camp House Grill on Kauai and I would always get a milkshake and then go to the video store and rent My Little Pony movies. I am also looking forward to spending some time with him. I am going to an art lesson with Ian tomorrow then we are going to go to Kim's Place tomorrow and look at wigs at the barber shop they have at MDA...I think I am allowed to get a free wig so i hope they have something good! On Wednesday my friend Kelly (who started out as my nurse) is going to come hang out with me and we'll go cruise at Kim's place or play one of the many games I have in my room. Momma comes back on Thursday!
I found out today that I will NOT be able to be on a regular diet once my counts are back up. This is because my immune system is brand new and is like a newborn's immune system. If there is any bacteria in any fruit or veg that I eat I can get very very sick. I think I will be able to eat fruit that I can peal at least...but still none of my favorite salads or sandwiches that have yummy fresh veggies on it :( That is definitely the one thing I miss most.
well I am very tired...I've been both energetic and tired today which just messes with my head.I hope you all sleep well and I will update soon!
love savy
Nana and Dad came over right when the movie ended and me cass decided to go for a walk. We all decided to walk up to the 24th floor and meet jan, janet and Evelyn. Evelyn was Jan's bestfriend in engineer school (and the only two girls AND the top two students in the class) and she was the one who connected us with jan and janet. Evelyn's daughter is looking at Rice University which is what brought them to houston today. It's nice being able to wander around on the different floors again :)
My nurse today instructed that my caregivers order me food every two hours to have me nibble on something. I need to link up my brain and stomach again and the only way to really do that is eat every few hours instead of a large meal. I don't get hunger signals and instead get nauseous when i don't eat. I think it's really important that my caregivers just order me food without asking what i want because I can't taste anything and have no appetite to eat anything. I sometimes hate having to talk about food and having to deal with eating because as the day went on i realized that I still can't eat real food because it hurts too much. it is very frustrating not being able to eat real food. so even though the doctor said i could probably leave by wednesday I don't think i am eating well enough and i am still dependent on fentanyl to keep me out of pain. I thought i could get rid of it by tomorrow but my pain in my throat and mouth came back and i had to use the fentanyl again. It of course made me tired and queazy and before I could eat anything i threw up :( me, nana and cass were going to go play bingo tonight but i ended up taking a nap and slept till 7:30 (bingo started at 7).
Nana leaves tomorrow morning :( Dad is taking over as caregiving and he said he is looking forward to our one on one time we will get :) we used to go on little dates together when i was real young; we would go to Camp House Grill on Kauai and I would always get a milkshake and then go to the video store and rent My Little Pony movies. I am also looking forward to spending some time with him. I am going to an art lesson with Ian tomorrow then we are going to go to Kim's Place tomorrow and look at wigs at the barber shop they have at MDA...I think I am allowed to get a free wig so i hope they have something good! On Wednesday my friend Kelly (who started out as my nurse) is going to come hang out with me and we'll go cruise at Kim's place or play one of the many games I have in my room. Momma comes back on Thursday!
I found out today that I will NOT be able to be on a regular diet once my counts are back up. This is because my immune system is brand new and is like a newborn's immune system. If there is any bacteria in any fruit or veg that I eat I can get very very sick. I think I will be able to eat fruit that I can peal at least...but still none of my favorite salads or sandwiches that have yummy fresh veggies on it :( That is definitely the one thing I miss most.
well I am very tired...I've been both energetic and tired today which just messes with my head.I hope you all sleep well and I will update soon!
love savy
Sunday, October 2, 2011
CAN I GET A 'WHAT'!?! CAN I GET A 'OKAY'!!!
GREAT news today on day +12!!!!!!
I'm just going to start this blog saying that my body ROCKS and can kick some serious cancer ASS!! and yes, i'll note that my side kick, stem cell man, helped me in this process.
Last night I only asked for more pain medicine once; and this was because I didn't wake up to excruciating pain but only to the nurses walking in. Granted my mouth and throat still hurt but I can definitely feel that it's getting BETTER!!! knowing this, I asked my nurse to give me a copy of my counts to see if they went up at all. Right as she handed them to me one of my doctors came in and said "oh no! she spoiled the surprise! i wanted to tell you the good news!" well, the good news is that my WBC count jumped from 1.5 to 5.8...5.8!!!!!! that's above the minimal amount you need to be normal!!! I also saw that my neutrafil count was normal as well! My hemoglobin is still a little low but has been a steady 9.5 for a couple of days now and my platelets went UP by themselves!!! I'm so proud!! So i finally have some soldiers on my side to kick the bacteria out of my mouth and throat and start healing these wounds i've had for a week now. Another good thing about this is that my visitors don't have to wear a mask and gloves around me now :) I can see their faces again! everyone was so excited about this and Jan and Janet brought me cupcakes to celebrate :) P.s. the doc told me that if my numbers continue to be this good (because they are taking me off of nupagen which may cause my cell count to lower a bit) then I could be released by FRIDAY!!!!!!!!!! yay!!!!!! awesome awesome awesome! I've been here in the hospital for 20 days now but it really doesn't feel like it's been that long at all. but i'll be happy to be back in my own bed!
My dad is off work now for the rest of the week so we will have time to hang out together after nana the caregiver goes back to forida. It's been so nice having nana here and having her to help me through the painful times.
however, the few days have been a little weird for me...i've been very loopy and silly for no real reason. I think with the not eating food (or eating then throwing up) and taking really strong pain killers has started to mess with my head. I am so DROWSY all the time (could be from the lack of sleep too) and when i'm that drowsy i just get silly. I have conversations in my head that i think i'm having in real life and when i answer a question that i thought nana asked...nana tells me she has no idea what i'm talking about. and i'm like...really? hmmmm...and then i can't remember where that came from haha. i also have to focus my eyes really hard to see straight which is difficult to do when you are also battling your eyelids to stay open. my eyes are glazed over and i zone out very quickly in a conversation. I'm also not very hungry so eating gets hard to do and can make me nauseous.
in 3 days (if my counts stay high) i can eat on a regular diet again. however, my mouth still really hurts and food still tastes weird so I would much rather have those go away first before i can eat real food again.
Momma returns on Thursday, Nana leaves Tuesday morning and Lully doesn't get to come here at all like she was planning to do. I hope she gets to come soon! and luckily i wont be in the hospital when she does!
OH! i asked my doctor if these WBC were mine or trav's cells and she said they are defiitely his cells. they have been giving me a drug (they call it chemo but it really itsn't chemo) that suppresses my cells and allows travy's cells to grow and take over. that was a huge relief to hear...cause i didn't want MY cells coming back at all...they are in time out FOREVER.
Cassidy is staying the night with me while nana sleeps at the hilton with my dad. Cass has tomorrow off so it will be good to have him around since he has been mia with sickness and work :(
I have been a bad girl and has not done any exercises today. I don't know whats up with me but even though I slept pretty good through the night i was exhausted today. I just laid in bed, napped and relaxed all day while nana and dad were out.
oh yeah, something kida funny happed early this morning around 4:00 am. I got weighed and since i haven't really been eating a lot and most of what i eat gets thrown up and honestly unless water has fat in it there is no way i should be gaining weight! HOWEVER i went from weighing 118 lbs to 123 lbs in ONE day. be and nana were laughing so hard about this because it just makes no sense at all. i'm like "oh man, all this water i drink goes straight to me thighs". just thought i'd share that with you.
anyways i'm going to shower now. I hope you all are as excited about this news as i am. i hope that by this time next week i'll be home writing my blog on my comfy couch!
love you all!
sav
p.s. i'm losing all my hair again. I think i would've have been a brunette so for those of you who are making bets to what color hair i'll have after this can put down brunette for round one. BUT round two could be completely different! maybe i'll be a redhead this time...or blue? who knows!
I'm just going to start this blog saying that my body ROCKS and can kick some serious cancer ASS!! and yes, i'll note that my side kick, stem cell man, helped me in this process.
Last night I only asked for more pain medicine once; and this was because I didn't wake up to excruciating pain but only to the nurses walking in. Granted my mouth and throat still hurt but I can definitely feel that it's getting BETTER!!! knowing this, I asked my nurse to give me a copy of my counts to see if they went up at all. Right as she handed them to me one of my doctors came in and said "oh no! she spoiled the surprise! i wanted to tell you the good news!" well, the good news is that my WBC count jumped from 1.5 to 5.8...5.8!!!!!! that's above the minimal amount you need to be normal!!! I also saw that my neutrafil count was normal as well! My hemoglobin is still a little low but has been a steady 9.5 for a couple of days now and my platelets went UP by themselves!!! I'm so proud!! So i finally have some soldiers on my side to kick the bacteria out of my mouth and throat and start healing these wounds i've had for a week now. Another good thing about this is that my visitors don't have to wear a mask and gloves around me now :) I can see their faces again! everyone was so excited about this and Jan and Janet brought me cupcakes to celebrate :) P.s. the doc told me that if my numbers continue to be this good (because they are taking me off of nupagen which may cause my cell count to lower a bit) then I could be released by FRIDAY!!!!!!!!!! yay!!!!!! awesome awesome awesome! I've been here in the hospital for 20 days now but it really doesn't feel like it's been that long at all. but i'll be happy to be back in my own bed!
My dad is off work now for the rest of the week so we will have time to hang out together after nana the caregiver goes back to forida. It's been so nice having nana here and having her to help me through the painful times.
however, the few days have been a little weird for me...i've been very loopy and silly for no real reason. I think with the not eating food (or eating then throwing up) and taking really strong pain killers has started to mess with my head. I am so DROWSY all the time (could be from the lack of sleep too) and when i'm that drowsy i just get silly. I have conversations in my head that i think i'm having in real life and when i answer a question that i thought nana asked...nana tells me she has no idea what i'm talking about. and i'm like...really? hmmmm...and then i can't remember where that came from haha. i also have to focus my eyes really hard to see straight which is difficult to do when you are also battling your eyelids to stay open. my eyes are glazed over and i zone out very quickly in a conversation. I'm also not very hungry so eating gets hard to do and can make me nauseous.
in 3 days (if my counts stay high) i can eat on a regular diet again. however, my mouth still really hurts and food still tastes weird so I would much rather have those go away first before i can eat real food again.
Momma returns on Thursday, Nana leaves Tuesday morning and Lully doesn't get to come here at all like she was planning to do. I hope she gets to come soon! and luckily i wont be in the hospital when she does!
OH! i asked my doctor if these WBC were mine or trav's cells and she said they are defiitely his cells. they have been giving me a drug (they call it chemo but it really itsn't chemo) that suppresses my cells and allows travy's cells to grow and take over. that was a huge relief to hear...cause i didn't want MY cells coming back at all...they are in time out FOREVER.
Cassidy is staying the night with me while nana sleeps at the hilton with my dad. Cass has tomorrow off so it will be good to have him around since he has been mia with sickness and work :(
I have been a bad girl and has not done any exercises today. I don't know whats up with me but even though I slept pretty good through the night i was exhausted today. I just laid in bed, napped and relaxed all day while nana and dad were out.
oh yeah, something kida funny happed early this morning around 4:00 am. I got weighed and since i haven't really been eating a lot and most of what i eat gets thrown up and honestly unless water has fat in it there is no way i should be gaining weight! HOWEVER i went from weighing 118 lbs to 123 lbs in ONE day. be and nana were laughing so hard about this because it just makes no sense at all. i'm like "oh man, all this water i drink goes straight to me thighs". just thought i'd share that with you.
anyways i'm going to shower now. I hope you all are as excited about this news as i am. i hope that by this time next week i'll be home writing my blog on my comfy couch!
love you all!
sav
p.s. i'm losing all my hair again. I think i would've have been a brunette so for those of you who are making bets to what color hair i'll have after this can put down brunette for round one. BUT round two could be completely different! maybe i'll be a redhead this time...or blue? who knows!
Tuesday, September 27, 2011
It's been a week!
Can you believe that it has only been a week since my transplant? It feels like it's been forever! My mouth sores have gotten worse so they hooked me up to a PCA which allows me to control pain medicine. I'm grateful that they didn't wait a week to do this like Queens hospital did. They have switched my meds to liquid form so now I have to bear the taste of medicine...yuck! It beats having to swallow 5 pills when drinking water is already too painful.
Nana has been taking care of me :). We watched Modern Family and a movie last night. Watching comedy helped me get distracted from my sores. I started painting a waterfall yesterday and Ian is showing me how to get as much color in the water as possible...so he made me use every color but blue to make the water. I wasn't able to go to his art class today because they have me hooked up all day to monitor my oxygen levels since they gave me the PCA. I meet up with him again later this week so he can show me how to do the cliff and background colors. I really painting and I'm a lot better at it than I ever expected to be!
I haven't been able to eat anything today...It hurts to chew and it reallly hurts to swallow.
My dad told me he is going to buy me a car! We have been texting all day and looking at craigslist for good deals. So far i have found a cute Mazda 6 for sale and a Honda element (like my momma has!) it is going to be strange having a car again! It has been since high school that I had a car... And I won't need to use it too much cause there is a shuttle and my bike which can take me to MD Anderson since parking is soooooo expensive! We are looking for a good roadtripping Car :) I'm so excited! Me and Cassidy have been talking for years now about doing a cross country road trip! I get giddy just thinking about it :)
I'm sooooooo excited for Christmas time! Chelsea is coming to Houston from the 27th of December to jan 07! Also my cousin Ale told me she might be here during Christmas break as well. AND my friend Contessa (since middle school) is planning on driving here for winter break too! OH I'm so excited to see them all!!it will be weird not being home for Christmas for the first time but I have family here and I'll be surrounded by friends and family :). It is very nice having these events to look forward to. The doc said that as my counts go up my mouth will heal...he said in possibly a couple of days or so. Please send me positive energy with healing words and hope that they disappear soon so I can eat!
I love you all and will chat again soon :)
Nana has been taking care of me :). We watched Modern Family and a movie last night. Watching comedy helped me get distracted from my sores. I started painting a waterfall yesterday and Ian is showing me how to get as much color in the water as possible...so he made me use every color but blue to make the water. I wasn't able to go to his art class today because they have me hooked up all day to monitor my oxygen levels since they gave me the PCA. I meet up with him again later this week so he can show me how to do the cliff and background colors. I really painting and I'm a lot better at it than I ever expected to be!
I haven't been able to eat anything today...It hurts to chew and it reallly hurts to swallow.
My dad told me he is going to buy me a car! We have been texting all day and looking at craigslist for good deals. So far i have found a cute Mazda 6 for sale and a Honda element (like my momma has!) it is going to be strange having a car again! It has been since high school that I had a car... And I won't need to use it too much cause there is a shuttle and my bike which can take me to MD Anderson since parking is soooooo expensive! We are looking for a good roadtripping Car :) I'm so excited! Me and Cassidy have been talking for years now about doing a cross country road trip! I get giddy just thinking about it :)
I'm sooooooo excited for Christmas time! Chelsea is coming to Houston from the 27th of December to jan 07! Also my cousin Ale told me she might be here during Christmas break as well. AND my friend Contessa (since middle school) is planning on driving here for winter break too! OH I'm so excited to see them all!!it will be weird not being home for Christmas for the first time but I have family here and I'll be surrounded by friends and family :). It is very nice having these events to look forward to. The doc said that as my counts go up my mouth will heal...he said in possibly a couple of days or so. Please send me positive energy with healing words and hope that they disappear soon so I can eat!
I love you all and will chat again soon :)
Monday, September 26, 2011
Mouth sores round two
Day +6.
So about a couple of days ago I noticed that my throat was sore...and sure enough, even with all my mouth care, mouth sores have formed again. Luckily they aren't on my uvula but they are sitting in my esophagus where the sun never shines (and my mouth wash doesn't hit) So, I'm back on a liquid diet :( even drinking water hurts...so far the only thing that doesn't hurt is ice cream. unfortunately ice cream doesn't fill me up like a real meal does :(
Cassidy had the last four days off from work and he was planning on spending his four day weekend here. but of course he had to get sick and stayed home all weekend so he didn't get me sick. what terrible timing! luckily nana is here and we have been hanging out this whole time :) Mom just left for Hawaii and she will be gone for 10 days. It's gonna be weird not having her around! Nana is here until the following monday. My Dad is still working in Clear Lake but he's been very busy (and sick) so I haven't seen much of him lately.
Me and mom got our first painting lessons last week and i've been painting up a storm! I've really enjoyed painting with watercolor and acrylics. I get my second lesson today :) yesterday i spent the whole day painting a picture for nana and it came out pretty good! it really helps the time pass quickly.
I will hopefully be here for just 2 more weeks but it all depends on my counts. I'll probably get platelets tomorrow but my wbc and hemoglobin have maintained their numbers quite well. I have seen a occupational therapist and physical therapist and they get me walking around and doing exercises. it's interesting being on the other side of therapy and also physical therapy for in-patients. the approach to each patient is different when compared to out-patients because it's more of a matter of preventing problems from occuring rather than working to fix the problems the patient has.
I'm doing fine in the hospita...just trying to manage my throat pain. Me and nana are going to go to BINGO tonight which volunteers hold twice a week. It's nice to have activities during the day which help the time pass.
I'll let you know if anything new happens in my life here...but I'm expecting it to be uneventful (which is good i suppose). I love you all :)
So about a couple of days ago I noticed that my throat was sore...and sure enough, even with all my mouth care, mouth sores have formed again. Luckily they aren't on my uvula but they are sitting in my esophagus where the sun never shines (and my mouth wash doesn't hit) So, I'm back on a liquid diet :( even drinking water hurts...so far the only thing that doesn't hurt is ice cream. unfortunately ice cream doesn't fill me up like a real meal does :(
Cassidy had the last four days off from work and he was planning on spending his four day weekend here. but of course he had to get sick and stayed home all weekend so he didn't get me sick. what terrible timing! luckily nana is here and we have been hanging out this whole time :) Mom just left for Hawaii and she will be gone for 10 days. It's gonna be weird not having her around! Nana is here until the following monday. My Dad is still working in Clear Lake but he's been very busy (and sick) so I haven't seen much of him lately.
Me and mom got our first painting lessons last week and i've been painting up a storm! I've really enjoyed painting with watercolor and acrylics. I get my second lesson today :) yesterday i spent the whole day painting a picture for nana and it came out pretty good! it really helps the time pass quickly.
I will hopefully be here for just 2 more weeks but it all depends on my counts. I'll probably get platelets tomorrow but my wbc and hemoglobin have maintained their numbers quite well. I have seen a occupational therapist and physical therapist and they get me walking around and doing exercises. it's interesting being on the other side of therapy and also physical therapy for in-patients. the approach to each patient is different when compared to out-patients because it's more of a matter of preventing problems from occuring rather than working to fix the problems the patient has.
I'm doing fine in the hospita...just trying to manage my throat pain. Me and nana are going to go to BINGO tonight which volunteers hold twice a week. It's nice to have activities during the day which help the time pass.
I'll let you know if anything new happens in my life here...but I'm expecting it to be uneventful (which is good i suppose). I love you all :)
Thursday, September 22, 2011
2 down, 98 days to go
It feels so good to be in the positive days now! Counting down has begun and I can't wait to be done with it all!
So transplant day was interesting. I got a little bag of cells that looked like blood and it only took about 30 minutes to do the transplant. I had to chew gum to help with the taste and smell of the preservative. there were about 5 doctors in my room standing and watching me as i say there and got my cells. it was a little unnerving because i got flushed, nauseous and anxious...and since they were all just watching me i felt too uncomfortable to throw up or do anything! I was very happy that it was over in a short time. Travis decided to re name me to either savannis, travannah, or jovannah traire rollins :P
A couple nights ago I woke up in excruciating pain in my uterus. Nothing would help it go away for decrease in pain so I called the nurse and they were able to give me some morphine for the pain. Luckily that worked and I was able to go back to sleep. The next day I felt crampy still but not as bad...however , i still had no idea what that pain was from. Well, it looks like I've started, what could be my last, period.....and man does it want to go out with a bang! this will be a week i will never forget and will never miss because Ive never had such cramps before! What's funny about it all is that my mom, who is supposed to be going through menopause, started her period a day before me...so i'm blaming her for all of this! I am very fortunate to be here because all the doctors and nurses are so quick to give me pain medications; they really don't want me to be in any sort of pain. :)
Me and mom went to an art lesson todaay about how to paint with water colors! I have to say that i learned a lot about it and was surprised at how much I liked it. I am working on a picture that is going to be both water color and acrylic paint. I'm excited to see him (the art teacher) again on monday :) we went up to the 24th floor, which is the highest floor, and painted in the observatory room. This floor is all windows and you can see all of Houston. I can't wait to go back tonight to check out downtown :) it was very peaceful up there and the perfect place to draw or paint.
Mom just left to go pick up nana who will be here for 10 days or so. Cassidy also has the entire weekend off so I will be surrounded this weekend by the people I love! I am hoping my dad will be able to come up this weekend as well.
I met with my occupational therapist and my physical therapist in the past two days. they gave me bands to work with to do exercises to keep me strong. i have to be aware of my platelet count because once they reach 20,000 then I'm at risk for an injury that won't heal. I need to set up a routine that will get me up and out of bed and walking around. My PT told me that doing 7 laps of the floor equals out to a mile. Hopefully I will be motivated to do more than a mile :)
My counts are dropping like they should be and I've felt a little fatigued from lack of RBC and whatnot. in about two weeks the doctors will be able to see if engraftment is occurring (that is a fancy word for my brother's cells are taking over mine). Slight graft versus host disease is expected to happen but they will make sure it is controlled and doesn't get worse. I will update you all on this when I hear more about how the transplant is progressing.
I love you all and will update later!
-sav
So transplant day was interesting. I got a little bag of cells that looked like blood and it only took about 30 minutes to do the transplant. I had to chew gum to help with the taste and smell of the preservative. there were about 5 doctors in my room standing and watching me as i say there and got my cells. it was a little unnerving because i got flushed, nauseous and anxious...and since they were all just watching me i felt too uncomfortable to throw up or do anything! I was very happy that it was over in a short time. Travis decided to re name me to either savannis, travannah, or jovannah traire rollins :P
A couple nights ago I woke up in excruciating pain in my uterus. Nothing would help it go away for decrease in pain so I called the nurse and they were able to give me some morphine for the pain. Luckily that worked and I was able to go back to sleep. The next day I felt crampy still but not as bad...however , i still had no idea what that pain was from. Well, it looks like I've started, what could be my last, period.....and man does it want to go out with a bang! this will be a week i will never forget and will never miss because Ive never had such cramps before! What's funny about it all is that my mom, who is supposed to be going through menopause, started her period a day before me...so i'm blaming her for all of this! I am very fortunate to be here because all the doctors and nurses are so quick to give me pain medications; they really don't want me to be in any sort of pain. :)
Me and mom went to an art lesson todaay about how to paint with water colors! I have to say that i learned a lot about it and was surprised at how much I liked it. I am working on a picture that is going to be both water color and acrylic paint. I'm excited to see him (the art teacher) again on monday :) we went up to the 24th floor, which is the highest floor, and painted in the observatory room. This floor is all windows and you can see all of Houston. I can't wait to go back tonight to check out downtown :) it was very peaceful up there and the perfect place to draw or paint.
Mom just left to go pick up nana who will be here for 10 days or so. Cassidy also has the entire weekend off so I will be surrounded this weekend by the people I love! I am hoping my dad will be able to come up this weekend as well.
I met with my occupational therapist and my physical therapist in the past two days. they gave me bands to work with to do exercises to keep me strong. i have to be aware of my platelet count because once they reach 20,000 then I'm at risk for an injury that won't heal. I need to set up a routine that will get me up and out of bed and walking around. My PT told me that doing 7 laps of the floor equals out to a mile. Hopefully I will be motivated to do more than a mile :)
My counts are dropping like they should be and I've felt a little fatigued from lack of RBC and whatnot. in about two weeks the doctors will be able to see if engraftment is occurring (that is a fancy word for my brother's cells are taking over mine). Slight graft versus host disease is expected to happen but they will make sure it is controlled and doesn't get worse. I will update you all on this when I hear more about how the transplant is progressing.
I love you all and will update later!
-sav
Tuesday, September 20, 2011
It's my BIRTHDAY!!!!
Hello everyone!
So TODAY is my big day...it is the day I get my new stem cells (courtesy of Travis) and start my new life post-cancer.
It has already been a week since I've been admitted into MD Anderson's hospital. I went in last Tuesday and started chemotherapy at 4:00 am the next day. I had three different drugs that were given to me at different times. The first was given to me for an hour (it begins with a F but I can never remember the name). After that I received Clorafarabine (i think?) for another hour and then finished off with 3 hours of Bulsofan; this is the drug that will most likely be the reason why I may be infertile now. I immediately felt the effects of the chemo that early morning. I was sick all morning unti 2:00 pm when I finially started to feel myself again. I'm just happy that I didn't have a continuous dose of chemo this time around. I had these three drugs given to me for 4 days which felt like the longest days of my life. I almost cannot believe how fast this week seems to have gone by. Going through chemo for hopefully the last time was so hard to do...I sometimes thought that I wasn't strong enough to get through it all. It really sucks feeling like crap all day! You really do have to live by each moment and not think of the next day because tomorrow seemed so far away. I'm glad the chemo is done but I still have so much to go through yet.
I have been moved 3 times since last tuesday. I was on the 11th floor with adults from tuesday to sunday. I loved my nurse Kelly who was super sweet and only a year older than me :) They moved me to the 10th floor on sunday when a room opened up for me. Once settled in there for a day (and fully unpacked) they informed me I had to move again to a different (but bigger) room that is going to be fully sanitized for my transplant day. I still don't know what time I am going to receive my brother's stem cells but it will be today for sure. So as of right now September 20th will be my new birthday (don't worry I'm still keeping April 24th as my original bday...that way I get two brays a year :D).
My counts haven't dropped yet from the chemo but I am now on a continuous drip of Tacrolimus which is a immunosuppresant. I will be on this drug for the entirety of my transplant process in the hospital and for the 70-80 days after I get out of the hospital (through pills). I have also begun the many pills of antibiotics and other antifungal medicines I'll be taking for the full 100 days as well. The Tacrolimus made me feel a little fatigued but I feel okay right now. I think the way I'll be feeling throughout this process will be fatigued and slightly queezy. This makes it a little harder to eat and keep food down. I still have a bad after taste in my mouth after I eat anything...I hope that goes away soon. I was also told that I will most likely get mouth sores (again) so I need to make sure I am rinsing my mouth every HOUR because I'm so afraid of getting them again. :(
I went to BINGO last night which was hosted by 3 volunteers and involved the kids, young adults and their families. Mom won more times than I did :P. We now have three more games to play-- Uno, Yahtzee and scrabble :) So if anyone wants to come over and play please stop by! :)
My dad is back in town and I will see him today when he shows up :) He will be here until mid October! I'm very excited about that.
So one week gone and I'm just at day ZERO! Still have a journey to get through but I hope I can get through it without too much trouble. I brought my Wii fit balance board to keep me exercising and I can't wait to see my physical therapist here :) I also started the process of sending my transcripts over to the University of Houston and talking with a counselor who will help me get accepted there as well. I hope most of my credits go through!
Well I am going to take advantage of feeling well and get some exercise in this morning. I will update soon! If I haven't updated in a while that probably means I am not feeling very well. Just wish me luck and keep sending those prayers my way! I will definitely need them :)
I love you all and miss you!
-Savannah
So TODAY is my big day...it is the day I get my new stem cells (courtesy of Travis) and start my new life post-cancer.
It has already been a week since I've been admitted into MD Anderson's hospital. I went in last Tuesday and started chemotherapy at 4:00 am the next day. I had three different drugs that were given to me at different times. The first was given to me for an hour (it begins with a F but I can never remember the name). After that I received Clorafarabine (i think?) for another hour and then finished off with 3 hours of Bulsofan; this is the drug that will most likely be the reason why I may be infertile now. I immediately felt the effects of the chemo that early morning. I was sick all morning unti 2:00 pm when I finially started to feel myself again. I'm just happy that I didn't have a continuous dose of chemo this time around. I had these three drugs given to me for 4 days which felt like the longest days of my life. I almost cannot believe how fast this week seems to have gone by. Going through chemo for hopefully the last time was so hard to do...I sometimes thought that I wasn't strong enough to get through it all. It really sucks feeling like crap all day! You really do have to live by each moment and not think of the next day because tomorrow seemed so far away. I'm glad the chemo is done but I still have so much to go through yet.
I have been moved 3 times since last tuesday. I was on the 11th floor with adults from tuesday to sunday. I loved my nurse Kelly who was super sweet and only a year older than me :) They moved me to the 10th floor on sunday when a room opened up for me. Once settled in there for a day (and fully unpacked) they informed me I had to move again to a different (but bigger) room that is going to be fully sanitized for my transplant day. I still don't know what time I am going to receive my brother's stem cells but it will be today for sure. So as of right now September 20th will be my new birthday (don't worry I'm still keeping April 24th as my original bday...that way I get two brays a year :D).
My counts haven't dropped yet from the chemo but I am now on a continuous drip of Tacrolimus which is a immunosuppresant. I will be on this drug for the entirety of my transplant process in the hospital and for the 70-80 days after I get out of the hospital (through pills). I have also begun the many pills of antibiotics and other antifungal medicines I'll be taking for the full 100 days as well. The Tacrolimus made me feel a little fatigued but I feel okay right now. I think the way I'll be feeling throughout this process will be fatigued and slightly queezy. This makes it a little harder to eat and keep food down. I still have a bad after taste in my mouth after I eat anything...I hope that goes away soon. I was also told that I will most likely get mouth sores (again) so I need to make sure I am rinsing my mouth every HOUR because I'm so afraid of getting them again. :(
I went to BINGO last night which was hosted by 3 volunteers and involved the kids, young adults and their families. Mom won more times than I did :P. We now have three more games to play-- Uno, Yahtzee and scrabble :) So if anyone wants to come over and play please stop by! :)
My dad is back in town and I will see him today when he shows up :) He will be here until mid October! I'm very excited about that.
So one week gone and I'm just at day ZERO! Still have a journey to get through but I hope I can get through it without too much trouble. I brought my Wii fit balance board to keep me exercising and I can't wait to see my physical therapist here :) I also started the process of sending my transcripts over to the University of Houston and talking with a counselor who will help me get accepted there as well. I hope most of my credits go through!
Well I am going to take advantage of feeling well and get some exercise in this morning. I will update soon! If I haven't updated in a while that probably means I am not feeling very well. Just wish me luck and keep sending those prayers my way! I will definitely need them :)
I love you all and miss you!
-Savannah
Wednesday, September 14, 2011
Hospital mailing info
I forgot to mention my mailing address while I am in the hospital. That way anyone can send cards and whatnotn to me directly :)
Savannah rollins
Room #1056
PO box 300206
Houston, tx 77230
Love you!!
Sav
Savannah rollins
Room #1056
PO box 300206
Houston, tx 77230
Love you!!
Sav
-7 days
Hello!
After a rough morning I am finally able to write in my blog today.
Of the seven eggs that were mature enough to fertilize only three of the seven fertilized and made it to the embryonic phase. They are now frozen until I am ready to have children :) yay! I am so happy and thankful that I had this opportunity to do this. Thank you dr. Allon!
The next day was just as busy because I has to get my subclavian catheter inserted and my PICC line removed from my arm. I opted to o under because it is a scary procedure to be awake for. I was out in a matter of seconds and when I woke up I asked the nurse if they had done the procedure yet. I honestly felt as if no time had passed at all. The nurse just laughed and said it was all done (I quickly looked and saw that there was indeed a CVC in my chest). My mom was there with me that day and we had to go wait to see my Leukemia doctor for the last time (he said he hopes to never see me again :P). From now on I am in the hands of my stem cell transplant team and doctor.
On Saturday I noticed my right arm was feeling funny and looking a little purplely. I decided to wait until Monday to see what it could be. After my bone marrow biopsy (that was done under sedation and will forever be done this way because it hurts a lot LESS than without it) I went to get an ultrasound done to see what!s going on. I found out that I have a clot in my arm (the same arm that I had a PICC line in) and we will wait until tomorrow to hear what Dr. Ciurea wants to do about it. After waiting forever and a half to see him he tells me that they my give anticoagulants for it; however, due to the chemo, my platelets are going to drop anyways and it will hopefully go away. He also told me that I will be admitted that night (Tuesday the 13th) around 5 or 6 pm. We finally left the hospital around 3 pm (after being there since 6:30 am UGH) and ate some food before heading back to finish up packing. I moved into unit 73 on floor 11 for the time being until they have room on the 10th floor which is the pediatric floor (with the WII and PS3 in it :D). I was definitely getting scared when I heard that they will be giving me my first dose of chemo starting at 4:00 am Wednesday 9/14/11. I have three chemo drugs; Fludarabine (1 hour), clofarabine (1 hour) and bosulfan (3 hours). I got done around 9:00 am and was sick as a dog. Not getting much sleep helped with my uneasiness but the clofarabine definitely messed with my stomach. I was able to sleep until the afternoon and finally started yo feel better once all the chemo had been stopped for a while. I ate some soup and chips for my breakfast/lunch (what is nice is that I have large menu of foods I can choose to have made when I call my order in).
I have an IV in my left arm right in the elbow crease to help with a study they are doing on busolfan. They have been taking out a lot of blood at different times to see how my body absorbs it. This is the drug that will most likely cause infertility. This IV makes my let arm useless and hurts when I moveit. Luckily it will be removed tonight at 11pm.
My therapist visited me (following visits by jan and Janet :) ) and then brought me down where I could meet other patients my age who are undergoing treatment. I met a girl who has been battling brain tumors for 7 years now. She told me they have done all that they can for her since the tumors are in such dangerous spots like brain stem, pituitary gland and optic nerve. I think that means it's terminal...and she is only 21 years old. She is a nice girl and I wish her the best.
I ate a good dinner and watched movies with my mom. I think Cassidy is staying the night tonight since he has tomorrow off. I hope tomorrow goes better than today and I hope to not be a nauseous. I will update again soon.
By the way; -7 days means I have 7 days before I receive my new stem cells which is day 0. From there they will start counting to reach 100 days. It's hard to think that I'm not even on day 1 yet! Soon it will be over for good!
Thanks for reading!
Savannah
After a rough morning I am finally able to write in my blog today.
Of the seven eggs that were mature enough to fertilize only three of the seven fertilized and made it to the embryonic phase. They are now frozen until I am ready to have children :) yay! I am so happy and thankful that I had this opportunity to do this. Thank you dr. Allon!
The next day was just as busy because I has to get my subclavian catheter inserted and my PICC line removed from my arm. I opted to o under because it is a scary procedure to be awake for. I was out in a matter of seconds and when I woke up I asked the nurse if they had done the procedure yet. I honestly felt as if no time had passed at all. The nurse just laughed and said it was all done (I quickly looked and saw that there was indeed a CVC in my chest). My mom was there with me that day and we had to go wait to see my Leukemia doctor for the last time (he said he hopes to never see me again :P). From now on I am in the hands of my stem cell transplant team and doctor.
On Saturday I noticed my right arm was feeling funny and looking a little purplely. I decided to wait until Monday to see what it could be. After my bone marrow biopsy (that was done under sedation and will forever be done this way because it hurts a lot LESS than without it) I went to get an ultrasound done to see what!s going on. I found out that I have a clot in my arm (the same arm that I had a PICC line in) and we will wait until tomorrow to hear what Dr. Ciurea wants to do about it. After waiting forever and a half to see him he tells me that they my give anticoagulants for it; however, due to the chemo, my platelets are going to drop anyways and it will hopefully go away. He also told me that I will be admitted that night (Tuesday the 13th) around 5 or 6 pm. We finally left the hospital around 3 pm (after being there since 6:30 am UGH) and ate some food before heading back to finish up packing. I moved into unit 73 on floor 11 for the time being until they have room on the 10th floor which is the pediatric floor (with the WII and PS3 in it :D). I was definitely getting scared when I heard that they will be giving me my first dose of chemo starting at 4:00 am Wednesday 9/14/11. I have three chemo drugs; Fludarabine (1 hour), clofarabine (1 hour) and bosulfan (3 hours). I got done around 9:00 am and was sick as a dog. Not getting much sleep helped with my uneasiness but the clofarabine definitely messed with my stomach. I was able to sleep until the afternoon and finally started yo feel better once all the chemo had been stopped for a while. I ate some soup and chips for my breakfast/lunch (what is nice is that I have large menu of foods I can choose to have made when I call my order in).
I have an IV in my left arm right in the elbow crease to help with a study they are doing on busolfan. They have been taking out a lot of blood at different times to see how my body absorbs it. This is the drug that will most likely cause infertility. This IV makes my let arm useless and hurts when I moveit. Luckily it will be removed tonight at 11pm.
My therapist visited me (following visits by jan and Janet :) ) and then brought me down where I could meet other patients my age who are undergoing treatment. I met a girl who has been battling brain tumors for 7 years now. She told me they have done all that they can for her since the tumors are in such dangerous spots like brain stem, pituitary gland and optic nerve. I think that means it's terminal...and she is only 21 years old. She is a nice girl and I wish her the best.
I ate a good dinner and watched movies with my mom. I think Cassidy is staying the night tonight since he has tomorrow off. I hope tomorrow goes better than today and I hope to not be a nauseous. I will update again soon.
By the way; -7 days means I have 7 days before I receive my new stem cells which is day 0. From there they will start counting to reach 100 days. It's hard to think that I'm not even on day 1 yet! Soon it will be over for good!
Thanks for reading!
Savannah
Thursday, September 8, 2011
So I am very sad to say that Travis and Big Tam left today :( :( :( :( :( :( :( :( It was so fun having them here and it sucks to see them go.
As Trav mentioned in his post, he got a first hand experience of my crazy life going back and forth to MD Anderson. Tam joined us on Thursday the 1st and she got to administer shots for both me and Trav. Friday I had appointments to get my heart checked (EKG), X-rays (chest) and CT scan (sinuses). After my appointments we headed down to Kemah to meet up with my dad and have dinner on the boardwalk. We cruised around and went on the ferris wheel :) It was a very nice night :) My dad got us a hotel room so me, case, tam and trav stayed in clear lake that night. The next day we all packed into dad's car and went to the space station museum. We got a tour of the control station and the Saturn 5 rocket. It was HUGE! We also saw moon rocks :)
Last weekend was labor day weekend so we had a little party on sunday at Jan and Janet's house with the fam, Tiffany and Josh and my neighbors Melissa and Daniel. My dad made gumbo while my brother FINALLY played his ukulele. Mind you it was the ONLY time he played :( unfortunately the night didn't end up too well for me and tam; I'm not sure what made us sick but we were both throwing up by the end of the night and I went to the ER at MDA to see if they could help me. Me and Cass were there until 4:30 am (with him having work that day at 10:00am) because they were so slow at everything they did. My blood work was normal which told us nothing as to why I got so sick. Monday was spent recovering from our poor tummies.
I have been going every other day to the fertility clinic for blood and ultrasounds to check my follicles and see how fast they are growing. My left ovary had 3 large follicles while my right had around 6. Towards the end of my cycle with injections, I had around 15 follicles in my ovaries. Today I had them retrieved and the doctor took out 13 eggs. Of the 13 eggs only 7 were mature enough to fertilize. I opted to have all of them fertilized (instead of the original plan of 50/50) because they told me the eggs were not in the best condition (thanks to 2 previous rounds of chemo I suspect). The clinic will call me tomorrow to tell me how many eggs fertilized and if the embryos are developing properly. The procedure was very short and I don't remember a thing. I was given an IV and a sedative that put me out so fast I don't remember falling asleep at all. Next thing I know I woke up on the bed and my uterus felt like someone poked 2 holes in it (which they did). After receiving a pain killer and attempting to eat a bagel me and mom headed home while Cass went to work. On the way home, however, I threw up into a mailing envelope and I have been nauseous since. It's like pre-chemo nauseousness. awesome. And to make it worse, Cassidy came home early because he's feeling sick :( :( I hope we feel better soon.
Tomorrow I will do the same again by waking up bright and early (before the sun is up) and get my blood drawn and then have my sub-clavian catheter put in. That will require sedation and I'm hoping that I don't get as sick afterwards like today. Monday I will be going under sedation (AGAIN) for my bone marrow biopsy (#4). Due to my egg harvesting pushing later into the week than was expected my move-in date to the hospital was pushed back a day to the 13th (tuesday). If all goes well I should be starting chemotherapy on the 14th. oh joy.
Anyways..I'm feeling sick so i will update again soon.
love you all!
-sav
As Trav mentioned in his post, he got a first hand experience of my crazy life going back and forth to MD Anderson. Tam joined us on Thursday the 1st and she got to administer shots for both me and Trav. Friday I had appointments to get my heart checked (EKG), X-rays (chest) and CT scan (sinuses). After my appointments we headed down to Kemah to meet up with my dad and have dinner on the boardwalk. We cruised around and went on the ferris wheel :) It was a very nice night :) My dad got us a hotel room so me, case, tam and trav stayed in clear lake that night. The next day we all packed into dad's car and went to the space station museum. We got a tour of the control station and the Saturn 5 rocket. It was HUGE! We also saw moon rocks :)
Last weekend was labor day weekend so we had a little party on sunday at Jan and Janet's house with the fam, Tiffany and Josh and my neighbors Melissa and Daniel. My dad made gumbo while my brother FINALLY played his ukulele. Mind you it was the ONLY time he played :( unfortunately the night didn't end up too well for me and tam; I'm not sure what made us sick but we were both throwing up by the end of the night and I went to the ER at MDA to see if they could help me. Me and Cass were there until 4:30 am (with him having work that day at 10:00am) because they were so slow at everything they did. My blood work was normal which told us nothing as to why I got so sick. Monday was spent recovering from our poor tummies.
I have been going every other day to the fertility clinic for blood and ultrasounds to check my follicles and see how fast they are growing. My left ovary had 3 large follicles while my right had around 6. Towards the end of my cycle with injections, I had around 15 follicles in my ovaries. Today I had them retrieved and the doctor took out 13 eggs. Of the 13 eggs only 7 were mature enough to fertilize. I opted to have all of them fertilized (instead of the original plan of 50/50) because they told me the eggs were not in the best condition (thanks to 2 previous rounds of chemo I suspect). The clinic will call me tomorrow to tell me how many eggs fertilized and if the embryos are developing properly. The procedure was very short and I don't remember a thing. I was given an IV and a sedative that put me out so fast I don't remember falling asleep at all. Next thing I know I woke up on the bed and my uterus felt like someone poked 2 holes in it (which they did). After receiving a pain killer and attempting to eat a bagel me and mom headed home while Cass went to work. On the way home, however, I threw up into a mailing envelope and I have been nauseous since. It's like pre-chemo nauseousness. awesome. And to make it worse, Cassidy came home early because he's feeling sick :( :( I hope we feel better soon.
Tomorrow I will do the same again by waking up bright and early (before the sun is up) and get my blood drawn and then have my sub-clavian catheter put in. That will require sedation and I'm hoping that I don't get as sick afterwards like today. Monday I will be going under sedation (AGAIN) for my bone marrow biopsy (#4). Due to my egg harvesting pushing later into the week than was expected my move-in date to the hospital was pushed back a day to the 13th (tuesday). If all goes well I should be starting chemotherapy on the 14th. oh joy.
Anyways..I'm feeling sick so i will update again soon.
love you all!
-sav
White Cell Power!
Hey everyone,
So I wanted to give an update regarding the stem cell donation process for savvy. I arrived in Houston august 30th and immediately jumped into the whirlwind known as Savannah's schedule. Let me tell you they are busier then anyone else I know!
Beginning the first of September I went into MD Anderson and drew 14 vials of blood, got a chest X-rays and an EKG. Everything looks good health wise for me. My resting heart rate was 44 which was funny, because its lower then my dads (he flaunts that he works out 1000x more then me).
Once all my lab results came back I met with the stem cell and leukemia doctors and was prescribed a drug called Neupogen which causes my body to rapidly generate and release white blood cells and stem cells into my blood. The medications was 2 shots a day. Big tam was the nurse in charge of my shots and I think she had too much fun with it. The look in her eyes with those needles was a little disconcerting.....
FYI the shot was subcutaneous and I took it in the arms, stomach and legs. In terms of least amount of pain I rate them as
1) leg
2) stomach
3) arm
The medication had some side effects for me. Mostly bone pain. It seems when all the cells are trying to get out of my bone they cause some stress which is felt as an achy feeling. It was generally located in my lower back and my joints.
Four days after I started my treatments I went into the apheresis center and began the extracting process. Basically the shove a huge needle into a vain on one arm and a iv Into my other arm. The machine sucks the blood out, separates the plasma, white blood cells, and red blood cells then puts the white blood cells in a bag for further processing. The stem cells are all mixed in with the WBCs so they have to goto another lab to be separated and counted.
The process for me takes about 3.5 hours and is generally painless, although I was ready to get out of the bed by the time it was done.
Their goal for number if stem cells collected is 4 million per kilogram. Hopefully my procedure yielded more then that!
1) leg
2) stomach
3) arm
Thursday, September 1, 2011
12 more days
Happy September everyone! Can you believe it has been almost 3 months since I've been diagnosed? I feel like it has been both short and long at the same time. So much has happened and yet there is still so much to happen.
I went to my two classes I had to take before getting admitted. One was just an intro class to what a stem cell transplant is and the other class was a review of what to expect when I go in to the hospital for my transplant. I already knew a lot of what we went over but it was good to be able to ask the nurse any questions we had about the transplant and hospital stay.
Travis had his first appointment at MDA yesterday. He got registered, met with the apheresis nurse (where they will be taking out his stem cells) and then he got 14 vials of blood taken out, chest X-rays and an EKG done. He was proud to say that he had a resting heart rate of 44 beat/min; he and my dad have a little competition going on now about who has the lowest heart rate. I guess we can say my brother doesn't really stress about anything :P His schedule for the next week will be:
Today (Thursday): appointments starting from 9:00 am and ending around 3:00 pm.
Friday: appointments with my stem cell doctor and receive the medication that will make his bones generate more stem cells. Side effects: his bones are going to hurt :(
Saturday-Tuesday: take medication
Tuesday: retrieve stem cells. This will require him to be in the apheresis center for about 3-4 hours. He will not be allowed to leave the bed so we will have to entertain him while he is there.
Wednesday-Thursday: MDA will make sure they have enough stem cells before letting Travis go back home to Florida. They will freeze the stem cells until I need them.
Big Tam comes in tonight and then tomorrow night we are going to Clear Lake and Kemah to stay the night with my dad at his hotel. I think we are going to have a party of a sort at Jan and Janet's house Sunday or Monday for Labor Day.
What to expect with me when I go into the hospital on September 12th:
- Check-in/move-in around 5:00pm. It usually takes a while for the room to be ready for me so I will expect to move-in late Monday evening. It is my dad's birthday so I hope we will do something before I check-in. He leaves I think the following day to go back to Hawaii. He will be back later this month I believe or early October.
- Tuesday the 13th I will start my high dose chemotherapy. I will recieve chemotherapy for around 7 days. I will get a day of rest before my stem cell transplant
- Day ZERO; I receive my stem cells via infusion through my catheter. It will take a couple of hours and will have an overpowering smell of sweet corn. yuck. Travis said I will have to eat corn everyday for the rest of my life to think of him and..his stem cells....I will most likely never want to eat corn after smelling it for 3 hours. >.<
- I will recover for about 30 days in the hospital. I will be poked 3 times a week to make sure my immune system to low (they give me a continuous medication that will supress my immune system the entire time I'm there), bothered every 4 hours to check my vitals, and the doctors will be checking to see my brother's cell take over my cells (that is called engraftment, which is what we want :) ) They will check for rashes, jaundice or other symptoms which come with the graft vs. host disease. Since I will be on the pediatric ward I will have more entertainment options than the adults...they don't even have a dvd player in their room (it has a VCR :P) I will be shoved out of bed multiple times a day to walk and go to physical therapy. I will start my salt and soda mouth wash when I begin chemotherapy and gargle every 2 hours. Honestly I won't have much of a chance to get bored because someone will either be waking me up, poking me, shoving me out of bed, making me gargle or eat or drink or shower. I found out that it is imperative to shower because the chemotherapy is excreted out through my pores and it is good to get that off my body or I might get a rash. Cassidy was worried that he will get leukemia now because he was sleeping in my bed with me the first time I got chemotherapy. I reassured him that he would have to be exposed a lot more than that to get cancer.
My eyelashes are very short now...they used to be nice and long but as they fell out they didn't grow back the same. Now I barely have eye lashes :( My hair is coming back..but it looks weird. I will most likely lose it again from my high dose chemotherapy.
I wanted to thank my friend Kaileen for the lovely package I got; she gave me two beautiful scarves (extra soft and colorful) and earrings that I get compliments on every time I wear them :) Thank you!
I will update again as my brother continues his appointments and let you know of any updates :)
-savy
I went to my two classes I had to take before getting admitted. One was just an intro class to what a stem cell transplant is and the other class was a review of what to expect when I go in to the hospital for my transplant. I already knew a lot of what we went over but it was good to be able to ask the nurse any questions we had about the transplant and hospital stay.
Travis had his first appointment at MDA yesterday. He got registered, met with the apheresis nurse (where they will be taking out his stem cells) and then he got 14 vials of blood taken out, chest X-rays and an EKG done. He was proud to say that he had a resting heart rate of 44 beat/min; he and my dad have a little competition going on now about who has the lowest heart rate. I guess we can say my brother doesn't really stress about anything :P His schedule for the next week will be:
Today (Thursday): appointments starting from 9:00 am and ending around 3:00 pm.
Friday: appointments with my stem cell doctor and receive the medication that will make his bones generate more stem cells. Side effects: his bones are going to hurt :(
Saturday-Tuesday: take medication
Tuesday: retrieve stem cells. This will require him to be in the apheresis center for about 3-4 hours. He will not be allowed to leave the bed so we will have to entertain him while he is there.
Wednesday-Thursday: MDA will make sure they have enough stem cells before letting Travis go back home to Florida. They will freeze the stem cells until I need them.
Big Tam comes in tonight and then tomorrow night we are going to Clear Lake and Kemah to stay the night with my dad at his hotel. I think we are going to have a party of a sort at Jan and Janet's house Sunday or Monday for Labor Day.
What to expect with me when I go into the hospital on September 12th:
- Check-in/move-in around 5:00pm. It usually takes a while for the room to be ready for me so I will expect to move-in late Monday evening. It is my dad's birthday so I hope we will do something before I check-in. He leaves I think the following day to go back to Hawaii. He will be back later this month I believe or early October.
- Tuesday the 13th I will start my high dose chemotherapy. I will recieve chemotherapy for around 7 days. I will get a day of rest before my stem cell transplant
- Day ZERO; I receive my stem cells via infusion through my catheter. It will take a couple of hours and will have an overpowering smell of sweet corn. yuck. Travis said I will have to eat corn everyday for the rest of my life to think of him and..his stem cells....I will most likely never want to eat corn after smelling it for 3 hours. >.<
- I will recover for about 30 days in the hospital. I will be poked 3 times a week to make sure my immune system to low (they give me a continuous medication that will supress my immune system the entire time I'm there), bothered every 4 hours to check my vitals, and the doctors will be checking to see my brother's cell take over my cells (that is called engraftment, which is what we want :) ) They will check for rashes, jaundice or other symptoms which come with the graft vs. host disease. Since I will be on the pediatric ward I will have more entertainment options than the adults...they don't even have a dvd player in their room (it has a VCR :P) I will be shoved out of bed multiple times a day to walk and go to physical therapy. I will start my salt and soda mouth wash when I begin chemotherapy and gargle every 2 hours. Honestly I won't have much of a chance to get bored because someone will either be waking me up, poking me, shoving me out of bed, making me gargle or eat or drink or shower. I found out that it is imperative to shower because the chemotherapy is excreted out through my pores and it is good to get that off my body or I might get a rash. Cassidy was worried that he will get leukemia now because he was sleeping in my bed with me the first time I got chemotherapy. I reassured him that he would have to be exposed a lot more than that to get cancer.
My eyelashes are very short now...they used to be nice and long but as they fell out they didn't grow back the same. Now I barely have eye lashes :( My hair is coming back..but it looks weird. I will most likely lose it again from my high dose chemotherapy.
I wanted to thank my friend Kaileen for the lovely package I got; she gave me two beautiful scarves (extra soft and colorful) and earrings that I get compliments on every time I wear them :) Thank you!
I will update again as my brother continues his appointments and let you know of any updates :)
-savy
Tuesday, August 30, 2011
My Hero Comes Today
So much has been going on lately. As the days get closer to me going into the hospital my calendar fills up with appointments to go to.
I started my hormone injections last week. I began with Lupron twice a day and am now doing 2 Lupron shots, 1 Gonal-f shot and a Luveris shot. My stomach is slowly becoming riddled with dots from the needles. Cassidy has been giving the majority of the shots and I don't care what some people say but those little needles hurt! The fertility clinic has been amazing; when we found out that they didn't include the cost to fertilize the eggs (another $2500) in the loan that we got they were able to do that for us for free. I see them to get blood drawn so that they can monitor the hormone levels and make sure I stay on the right dosage. It has been annoying to do all of the shots but we are all excited about what the outcome of all this is. Cassidy keeps saying he wants TWO sets of twins...oh boy... The date for my egg retrieval is set for september 6th; I will let you know if that changes. I am hoping to get at least 8-10 eggs...but it all depends on how viable they are and if the embryos develop properly.
Me and mom got into art last week. We went to TJ Maxx and they have good books and beginning art sets that teach you how to sketch and paint with acrylics. I have been practicing but drawing is quite tough. I just need to practice. My therapist told me that art is a good way at distracting myself and possibly help me with any anxiety I get with upcoming procedures. I haven't figured that part out quite yet. I did start on my first abstract drawing though...I am surprising myself on the time that I have been putting into it because I thought I never had the patience to draw. We haven't tried painting yet...that's a whole other side of painting that I'm not sure I'm ready for. We shall see!
It has been wonderful going to the trainer twice a week with Janet. It feels good to be healthy and get stronger. I am still working to get my last 5 pounds back to get me back to my normal weight. It scares me because I need to gain more than just 5 pounds because I'm going to lose it all again when I go into the hospital. Everyday gets more scary as it gets closer to my check-in date. My freedom and my health are about to go out the window and I don't want to let go of them. That is an odd statement. however, because I'm going into the hospital for my health...to get rid of this cancer. It is hard to go into chemotherapy when you are feeling well...I just hate feeling weak and sick when I'm on it and the amount that I will be getting on September 13th really scares me. The fuzz I have grown back on my head will go away :( I just need to keep myself busy and try to get through this as fast as I can.
Cassidy is joining our neighbor in soccer twice a week starting next week. He has a team with his work and they play on an indoor field. Cass is so excited to play soccer and I hope that he has fun and meets people. We had ice cream with our neighbors the other night which was fun. It has been a while since I've hung out with people my age...my therapist is going to talk to someone about getting me into a group of cancer ridden patients that are my age. I hope I meet someone...I miss my friends.
My dad has been working out in Clear Lake for that past week and he will be here until after Labor Day. It has been nice seeing him on the weekends. All four of us went down (up?) to Austin last weekend to visit Angel, Tom and their daughter Teagan. We ate at an awesome restaurant called Chuys that was super hero themed. Such good food! That night we all went over to my other cousin's house Pam and Chris for dinner; they have a beautiful home and pool that we all hung out in after dinner. It has been so nice meeting more and more family that I have in Texas. I still haven't had a chance to explore Austin and all its wonders but so far I do love it. Unfortunately I found out there isn't a physical therapy school down there so I won't be able to live in Austin for school.
Travis flies in today! He starts his tests tomorrow and my mom told me he is getting nervous about getting poked. That's how I've been since day one! I hope they don't hurt him too bad :( I am so excited about having him and Big Tam here for a week! Big Tam gets in on the 1st. We are hopefully going down to Clear Lake and Kemah friday night to check out the boardwalk at night time (when it's not AS hot). It will be a fun week.
I have been feeling good; just trying to keep my appetite up and eating as much as I can! I miss everyone from Kauai and Oahu and I hope to see them all again soon.
Thank you from:
The Alderetes, the Pembrooks and their friends, my dad's co-workers who sent a package full of everything Kauai-made, the Fishers, and Cathy for everything you have sent. I love everything and really appreciate your thoughts :) I miss you all!
love,
Savy
I started my hormone injections last week. I began with Lupron twice a day and am now doing 2 Lupron shots, 1 Gonal-f shot and a Luveris shot. My stomach is slowly becoming riddled with dots from the needles. Cassidy has been giving the majority of the shots and I don't care what some people say but those little needles hurt! The fertility clinic has been amazing; when we found out that they didn't include the cost to fertilize the eggs (another $2500) in the loan that we got they were able to do that for us for free. I see them to get blood drawn so that they can monitor the hormone levels and make sure I stay on the right dosage. It has been annoying to do all of the shots but we are all excited about what the outcome of all this is. Cassidy keeps saying he wants TWO sets of twins...oh boy... The date for my egg retrieval is set for september 6th; I will let you know if that changes. I am hoping to get at least 8-10 eggs...but it all depends on how viable they are and if the embryos develop properly.
Me and mom got into art last week. We went to TJ Maxx and they have good books and beginning art sets that teach you how to sketch and paint with acrylics. I have been practicing but drawing is quite tough. I just need to practice. My therapist told me that art is a good way at distracting myself and possibly help me with any anxiety I get with upcoming procedures. I haven't figured that part out quite yet. I did start on my first abstract drawing though...I am surprising myself on the time that I have been putting into it because I thought I never had the patience to draw. We haven't tried painting yet...that's a whole other side of painting that I'm not sure I'm ready for. We shall see!
It has been wonderful going to the trainer twice a week with Janet. It feels good to be healthy and get stronger. I am still working to get my last 5 pounds back to get me back to my normal weight. It scares me because I need to gain more than just 5 pounds because I'm going to lose it all again when I go into the hospital. Everyday gets more scary as it gets closer to my check-in date. My freedom and my health are about to go out the window and I don't want to let go of them. That is an odd statement. however, because I'm going into the hospital for my health...to get rid of this cancer. It is hard to go into chemotherapy when you are feeling well...I just hate feeling weak and sick when I'm on it and the amount that I will be getting on September 13th really scares me. The fuzz I have grown back on my head will go away :( I just need to keep myself busy and try to get through this as fast as I can.
Cassidy is joining our neighbor in soccer twice a week starting next week. He has a team with his work and they play on an indoor field. Cass is so excited to play soccer and I hope that he has fun and meets people. We had ice cream with our neighbors the other night which was fun. It has been a while since I've hung out with people my age...my therapist is going to talk to someone about getting me into a group of cancer ridden patients that are my age. I hope I meet someone...I miss my friends.
My dad has been working out in Clear Lake for that past week and he will be here until after Labor Day. It has been nice seeing him on the weekends. All four of us went down (up?) to Austin last weekend to visit Angel, Tom and their daughter Teagan. We ate at an awesome restaurant called Chuys that was super hero themed. Such good food! That night we all went over to my other cousin's house Pam and Chris for dinner; they have a beautiful home and pool that we all hung out in after dinner. It has been so nice meeting more and more family that I have in Texas. I still haven't had a chance to explore Austin and all its wonders but so far I do love it. Unfortunately I found out there isn't a physical therapy school down there so I won't be able to live in Austin for school.
Travis flies in today! He starts his tests tomorrow and my mom told me he is getting nervous about getting poked. That's how I've been since day one! I hope they don't hurt him too bad :( I am so excited about having him and Big Tam here for a week! Big Tam gets in on the 1st. We are hopefully going down to Clear Lake and Kemah friday night to check out the boardwalk at night time (when it's not AS hot). It will be a fun week.
I have been feeling good; just trying to keep my appetite up and eating as much as I can! I miss everyone from Kauai and Oahu and I hope to see them all again soon.
Thank you from:
The Alderetes, the Pembrooks and their friends, my dad's co-workers who sent a package full of everything Kauai-made, the Fishers, and Cathy for everything you have sent. I love everything and really appreciate your thoughts :) I miss you all!
love,
Savy
Tuesday, August 23, 2011
Give me the hormones!!
So i meant to update a lot sooner than this...but procrastination prevailed.
A lot has been going on in my world recently. Last week was a good week. After pretty much deciding that I probably won't be able to have kids because insurance doesn't cover the egg harvesting, the fertility clinic called to say that they further reduced the price of the procedure to half the cost. Basically, the doctor is doing the procedure for free and all we are paying for is the anethesiologist and the laboratories. They also gave us the most expensive medicine I need for free and switched one of the medication to a cheaper one cutting the price of the medications down by thousands of dollars. This and the help of a small loan has made it possible for me to do the hormone therapy and have the egg harvesting procedure done. It has been an amazing experience having these people at this clinic, and my boyfriend at my side fighting for every opportunity there is so that I may have a chance at being a mother. I just want to say thank you for everyone who has been praying, sending positive thoughts and helping me get to this point...because it means so much to me knowing that I could have a kid one day.
I got my medicines yesterday and started my first day of injections. Each medication has to be injected into my belly by a syringe with some days up to 4 injections. I will do this for 2 weeks and then have the procedure to have the eggs retrieved. Cassidy will fertilize the eggs and they will be frozen as embryos about 2 days before I'm supposed to go into the hospital. My mom is still getting used to injecting the medication...she underestimated how sharp the needles are and when she went to "stab" me she went very hard and fast....and accidentally pulled the needle out before injecting the medication. SO she had to poke me AGAIN...owwww. luckily the needles aren't too big and I survived haha. Lets just say I'll be having a beer before each injection to help me out.
I started my sessions with the psychiatrist at MDA; she might be able to help me with my anxiety I get with each procedure and just to have someone to talk to who might help me cope with everything that has been going on. I will see her twice a week and hope to get Cassidy and my mom into the sessions with me one day.
My mom has an appointment to donate platelets on thursday. Thank you!!
My dad is here for work for 2 weeks out at clear lake which is about 30 minutes away from where i live. It is SO nice to have him so close to me! We went with Jan and Janet to the Saints vs. Texans football game on saturday (cassidy couldn't make it cause he worked late that day). It was so fun! Unfortunately the Saints lost...should I be going for the Texans? Not sure yet!
Travis will be arriving on the 30th of August and start his testing the next day. Big Tam comes in on the first of september! They will both be here until the 8th of September. I am scheduled to move into the hospital on the 12th of september (my dad's birthday). I should start chemotherapy the next day and a couple days later have my transplant. I will spend no more than 30 days in the hospital if I have no complications. After I am released I will be under house arrest for another 30 days and I will have to have a caregiver with me 24/7. My mom will be here until mid-october but I'm not sure what the plan will be when she leaves. Hopefully one of my grandmas will come stay with me :) I am definitely getting nervous for my move in date to the hospital...I'm hoping my sessions to learn guided imagery or other ways to learn how to work with my anxiety will help me during that time.
I have been working out twice a week with a trainer and it has been great! It feels good to work out and get my muscles stronger again before I go into the hospital. I am excited to work with the physical therapists in the hospital and see what it's like to go through PT as a patient. I was told that the exercise facility they have at MDA is amazing. I also hope to do some yoga and pilates at MDA before the 12th.
Me and Cassidy made 2 years on Sunday. So much has happened in 2 years I feel like we've been together for 5 years!. My mom and dad's 31st anniversary is today...congrats! Me and Cass checked out the Houston Aquarium, rode on a ferris wheel and checked out tigers :) I had a good day :)
I hope everyone is doing fine...I can't wait for all of this to be over!
Thank you for reading!
-sav
A lot has been going on in my world recently. Last week was a good week. After pretty much deciding that I probably won't be able to have kids because insurance doesn't cover the egg harvesting, the fertility clinic called to say that they further reduced the price of the procedure to half the cost. Basically, the doctor is doing the procedure for free and all we are paying for is the anethesiologist and the laboratories. They also gave us the most expensive medicine I need for free and switched one of the medication to a cheaper one cutting the price of the medications down by thousands of dollars. This and the help of a small loan has made it possible for me to do the hormone therapy and have the egg harvesting procedure done. It has been an amazing experience having these people at this clinic, and my boyfriend at my side fighting for every opportunity there is so that I may have a chance at being a mother. I just want to say thank you for everyone who has been praying, sending positive thoughts and helping me get to this point...because it means so much to me knowing that I could have a kid one day.
I got my medicines yesterday and started my first day of injections. Each medication has to be injected into my belly by a syringe with some days up to 4 injections. I will do this for 2 weeks and then have the procedure to have the eggs retrieved. Cassidy will fertilize the eggs and they will be frozen as embryos about 2 days before I'm supposed to go into the hospital. My mom is still getting used to injecting the medication...she underestimated how sharp the needles are and when she went to "stab" me she went very hard and fast....and accidentally pulled the needle out before injecting the medication. SO she had to poke me AGAIN...owwww. luckily the needles aren't too big and I survived haha. Lets just say I'll be having a beer before each injection to help me out.
I started my sessions with the psychiatrist at MDA; she might be able to help me with my anxiety I get with each procedure and just to have someone to talk to who might help me cope with everything that has been going on. I will see her twice a week and hope to get Cassidy and my mom into the sessions with me one day.
My mom has an appointment to donate platelets on thursday. Thank you!!
My dad is here for work for 2 weeks out at clear lake which is about 30 minutes away from where i live. It is SO nice to have him so close to me! We went with Jan and Janet to the Saints vs. Texans football game on saturday (cassidy couldn't make it cause he worked late that day). It was so fun! Unfortunately the Saints lost...should I be going for the Texans? Not sure yet!
Travis will be arriving on the 30th of August and start his testing the next day. Big Tam comes in on the first of september! They will both be here until the 8th of September. I am scheduled to move into the hospital on the 12th of september (my dad's birthday). I should start chemotherapy the next day and a couple days later have my transplant. I will spend no more than 30 days in the hospital if I have no complications. After I am released I will be under house arrest for another 30 days and I will have to have a caregiver with me 24/7. My mom will be here until mid-october but I'm not sure what the plan will be when she leaves. Hopefully one of my grandmas will come stay with me :) I am definitely getting nervous for my move in date to the hospital...I'm hoping my sessions to learn guided imagery or other ways to learn how to work with my anxiety will help me during that time.
I have been working out twice a week with a trainer and it has been great! It feels good to work out and get my muscles stronger again before I go into the hospital. I am excited to work with the physical therapists in the hospital and see what it's like to go through PT as a patient. I was told that the exercise facility they have at MDA is amazing. I also hope to do some yoga and pilates at MDA before the 12th.
Me and Cassidy made 2 years on Sunday. So much has happened in 2 years I feel like we've been together for 5 years!. My mom and dad's 31st anniversary is today...congrats! Me and Cass checked out the Houston Aquarium, rode on a ferris wheel and checked out tigers :) I had a good day :)
I hope everyone is doing fine...I can't wait for all of this to be over!
Thank you for reading!
-sav
Wednesday, August 17, 2011
And so the countdown begins...
A lot has happened in a couple of days...mostly occurring today!
Monday I didn't have any appointments so me and mom did some yoga (to loosen up after doing pilates on Sunday) and then I went to do my evaluation with the personal trainer I'll be going to twice a week with Janet. After that we swam in the pool and did the elliptical for half an hour. I must say that it is very nice to be able to work out again...though I haven't missed the being sore part. and man am I sore!
Tuesday mom and I met with my social worker who gave us information about support groups with people my age with a simiar diagnosis as me as well as classes we can attend like yoga, pilates, or get acupuncture or massage. Pretty much anything to help with coping with the stress that comes with all that has happened. I am defintely going to use some of their resources.
Today we picked up Cassidy from the airport and went to MDA to see my doctor to review my blood counts and talk about what the next plan is. My blood is back to normal (yay!) and since we still haven't heard from the transplant team about the date of my transplant, my doctor said to tentatively plan to start my next round of chemo on friday since we didn't know if the transplant was going to be 2 weeks from now or 4+ weeks. If it is 4 or more weeks then I would have to do another round first. During that appointment my mom went to go donate blood :) good job mom! she said she is going to donate platelets next weeks as well. If you have to opportunity to donate blood and platelets please do! Hospitals are always in need of both and i've had to use both to keep me alive and healthy.
After the appointment with my doctor we all met up with the young adult specialist who worked on the pediatric ward of MDA and she showed us where I'll be staying in the hospital and all the amenities they have there. She sets up group meetings that allows us to socialize with each other, art classes, writing classes and more to help with our stay in the hospital. She also showed us a very cool, young adults only, room that has a pool table, games, video games (like pac-man, racing ect.) and basketball hoop games like you see in the arcade. There is also a movie room, free beverages and well pretty much everything you expect to see in an arcade room but with no tokens required :) it's another great way to meet people my age...especially with my disease there aren't a lot of people my age around. I think she told me there were about 20 all together right now. Each room in the pediatric ward has both a PS3 and WII game systems so I can bring my games and balance board to keep me entertained for the 30 days I'll be in there. She also gave me some people's cards to call who can help me learn how to de-stress, control my anxiety that I have with procedures and also people who can help me with getting in to the University of Houston. Very helpful!!
While in Florida I learned that my insurance doesn't cover any of my fertility treatments I was planning on going through to harvest my eggs so that I may have children one day. The fertility clinic has been working non stop since then to discount the procedure and the medicine I need. Today I received a call that told me they discounted it $3,000 along with finding round about ways to give me some of the medicines free of charge so that they only cost around $1,000. With their help and a loan I am actually able to (hopefully) start the process of injections for the next 10 days and have the procedure before my transplant. I will now have the ability to have my own children one day :D thank you everyone at the fertility clinic!!!
The last good news of the day is that the stem cell team got back to us about scheduling for the transplant. As of right now Travis will be flying up to houston on August 30th and starting his tests until the 7th of September. Big Tam will be joining us on the 1st :) I will begin high dose chemotherapy on the 8th of September, just days after my planned procedure to remove my eggs. It's scary to think that in just three weeks i'll be stuck in the hospital again...but luckily with Physical therapists there to kick me out of bed (Actually they aren't allowed to "kick" but definitely allowed to push me out of bed with positive reinforcement). I'm nervous but excited that I have a plan...a very TIGHT plan that will really come down to the wire with getting everything done before it's time for me to start my treatment. i hope i am ready!
Tomorrow I go see the OB-GYN and go to the trainer at 4pm. Cassidy goes back to work. My dad comes in on Friday and he will be working by Clear Lake for 2 weeks. It will be good to have him around :)
I will let you all know how everything plays out! More details to come when I get them!
-Savy
Monday I didn't have any appointments so me and mom did some yoga (to loosen up after doing pilates on Sunday) and then I went to do my evaluation with the personal trainer I'll be going to twice a week with Janet. After that we swam in the pool and did the elliptical for half an hour. I must say that it is very nice to be able to work out again...though I haven't missed the being sore part. and man am I sore!
Tuesday mom and I met with my social worker who gave us information about support groups with people my age with a simiar diagnosis as me as well as classes we can attend like yoga, pilates, or get acupuncture or massage. Pretty much anything to help with coping with the stress that comes with all that has happened. I am defintely going to use some of their resources.
Today we picked up Cassidy from the airport and went to MDA to see my doctor to review my blood counts and talk about what the next plan is. My blood is back to normal (yay!) and since we still haven't heard from the transplant team about the date of my transplant, my doctor said to tentatively plan to start my next round of chemo on friday since we didn't know if the transplant was going to be 2 weeks from now or 4+ weeks. If it is 4 or more weeks then I would have to do another round first. During that appointment my mom went to go donate blood :) good job mom! she said she is going to donate platelets next weeks as well. If you have to opportunity to donate blood and platelets please do! Hospitals are always in need of both and i've had to use both to keep me alive and healthy.
After the appointment with my doctor we all met up with the young adult specialist who worked on the pediatric ward of MDA and she showed us where I'll be staying in the hospital and all the amenities they have there. She sets up group meetings that allows us to socialize with each other, art classes, writing classes and more to help with our stay in the hospital. She also showed us a very cool, young adults only, room that has a pool table, games, video games (like pac-man, racing ect.) and basketball hoop games like you see in the arcade. There is also a movie room, free beverages and well pretty much everything you expect to see in an arcade room but with no tokens required :) it's another great way to meet people my age...especially with my disease there aren't a lot of people my age around. I think she told me there were about 20 all together right now. Each room in the pediatric ward has both a PS3 and WII game systems so I can bring my games and balance board to keep me entertained for the 30 days I'll be in there. She also gave me some people's cards to call who can help me learn how to de-stress, control my anxiety that I have with procedures and also people who can help me with getting in to the University of Houston. Very helpful!!
While in Florida I learned that my insurance doesn't cover any of my fertility treatments I was planning on going through to harvest my eggs so that I may have children one day. The fertility clinic has been working non stop since then to discount the procedure and the medicine I need. Today I received a call that told me they discounted it $3,000 along with finding round about ways to give me some of the medicines free of charge so that they only cost around $1,000. With their help and a loan I am actually able to (hopefully) start the process of injections for the next 10 days and have the procedure before my transplant. I will now have the ability to have my own children one day :D thank you everyone at the fertility clinic!!!
The last good news of the day is that the stem cell team got back to us about scheduling for the transplant. As of right now Travis will be flying up to houston on August 30th and starting his tests until the 7th of September. Big Tam will be joining us on the 1st :) I will begin high dose chemotherapy on the 8th of September, just days after my planned procedure to remove my eggs. It's scary to think that in just three weeks i'll be stuck in the hospital again...but luckily with Physical therapists there to kick me out of bed (Actually they aren't allowed to "kick" but definitely allowed to push me out of bed with positive reinforcement). I'm nervous but excited that I have a plan...a very TIGHT plan that will really come down to the wire with getting everything done before it's time for me to start my treatment. i hope i am ready!
Tomorrow I go see the OB-GYN and go to the trainer at 4pm. Cassidy goes back to work. My dad comes in on Friday and he will be working by Clear Lake for 2 weeks. It will be good to have him around :)
I will let you all know how everything plays out! More details to come when I get them!
-Savy
Saturday, August 13, 2011
I'm Back!
Sorry for being a slacker and being MIA for a while. I am back from my week in Florida and it was so good seeing my family!
so to catch up...
Monday before I left I had my blood drawn to see what my counts were before I left for Florida. The PA told me that they all dropped dramatically and I'll not only need transfusions but possibly while I'm in Florida. So that evening and also on tuesday i had blood and platelets given to me. Wednesday morning before we went to the airport I got my blood drawn and talked to my PA who said that I would be fine in Florida and not need any transfusions. that was a huge relief because it would definitely have made things more difficult if I had to do that. So Janet takes Me, my mom and Cassidy to the airport and we all head for Tampa! Nana, Chelsea and Maile picked us up and we headed to Nana's house in Bradenton. My dad, sister, Maile, mom, Cassidy and I stayed at Nana's house with travis and Tam joining us on two of those nights. It was fun and busy!
Florida was a nice vacation for everyone to sleep in, relax and just worry about Travy's graduation party. The party was held on Sunday, the day after his graduation. Even though I could have gone, we all thought it was best for me to stay and cruise the day with cassidy, steve and Terry. So we went down to St. Armand's circle and walk around. Let's just say it was really hot in Florida...definitely hard to walk around outside during the day. My dad got me a waterproof cover for my PICC line I have in my arm so after walking around we all hung out in nana's pool :) it's so nice to swim again!
PARTY:
The party was held at my uncle's fire house station and there was a space for food, people and the band. Travis and his band played and then also my uncle David's band played. Such good music; the whole time we were there someone was playing. My dad and other uncles made kalua pork sandwiches and crawfish (cajun style) that had shrimp, potatoes and corn on the cob in it. SO GOOD! it took me a while to be comfortable enough to eat the crawfish...it freaked me out because they STARE at you!! haha. Cassidy met a lot of family that day...and i did too! a lot of people I haven't seen since i was little so I was also learning names and trying to understand how I'm related to them. My cousin Danielle (who i haven't seen since I was little) is getting married in Miami in feburary and we are all determined to be there! it will be so much fun and i'll (hopefully) be celebrating cancer free. After being in the hot room all day an hugging sweaty people we all went home and sat in the pool for 2 hours. we had like 10 people in there haha. Ale, travis and tam stayed the night :) I think that night there were 10 people sleeping under nana's roof!
The rest of the week was spent in tampa and st. petersburg. Cassidy left tuesday morning so we headed up to tampa with travis and tam; we stopped and hung out at the beach house in st. petersburg our friend's lent us for a couple of days. Dad made really good shrimp scampi and afterwards we headed to tampa to sleep. After dropping cassidy off at the airport (he went to maryland for a week to see family and friends) I hung out with Tam all day; we ate lunch with Lully then went back to St. petersburg to hang out with the parents, maile and chelsea. Nana was nice enough to drive chelsea and maile back and for between st. petersburg and bradenton (about 1 hour drive).
BUT...that's when the rains came. the weather had been beautiful until we stayed at the beach house and wanted to be outide. then it just rained all day. we were supposed to goto Busch Gardens on wednesday but it was too rainy :( :( :( so sad!!! even maile was sad. so, we went to the tampa aquarium which was fun for maile. it was just stressful to tidy up the beach house before we left, get to the aquarium and be done in time to get back to bradenton and pack up our stuff quickly before dropping maile and chelsea at grandad's for dinner then me and my mom go with bucha to aunt julian's house. it was chaotic due to mis communications and still needing to pack. we were all due to fly back home the next day; it felt like we had so much more time and then BAM i'm going back to texas. I'm still upset with florida and not letting us go on roller coasters :(
I had a blood test yesterday and my counts are almost back to normal. i'm still a little nutrapenic but i've been feeling fine this whole time.
I do have some good news and bad news:
Good news is that my insurance covers the stem cell transplant. yay! that means that we are waiting to hear from the stem cell team to figure out when they want to schedule travis' tests and start the process. hopefully monday we will find out!
the bad news is that my insurance does NOT cover my fertility treatments and egg harvesting. We are talking to my doctor to see if they can do anything for me to help out with the costs but it will cost about $10,000 to do the whole thing. Since I don't have a lot of time to figure out other ways to get that kind of money i'll probably end up just crossing my fingers and hope my ovaries don't die from all the chemo :( i guess only time will tell.
anyways...i'm sorry it took so long to write...i think i wrote a blog post but i don't see it...i guess it didn't get published. i promise to be better! i hopefully will start working out with a trainer this week...i definitely need to be more active before i sit in the hospital for 30 days.
i hope you all are doing well! keep in touch :)
-sav
so to catch up...
Monday before I left I had my blood drawn to see what my counts were before I left for Florida. The PA told me that they all dropped dramatically and I'll not only need transfusions but possibly while I'm in Florida. So that evening and also on tuesday i had blood and platelets given to me. Wednesday morning before we went to the airport I got my blood drawn and talked to my PA who said that I would be fine in Florida and not need any transfusions. that was a huge relief because it would definitely have made things more difficult if I had to do that. So Janet takes Me, my mom and Cassidy to the airport and we all head for Tampa! Nana, Chelsea and Maile picked us up and we headed to Nana's house in Bradenton. My dad, sister, Maile, mom, Cassidy and I stayed at Nana's house with travis and Tam joining us on two of those nights. It was fun and busy!
Florida was a nice vacation for everyone to sleep in, relax and just worry about Travy's graduation party. The party was held on Sunday, the day after his graduation. Even though I could have gone, we all thought it was best for me to stay and cruise the day with cassidy, steve and Terry. So we went down to St. Armand's circle and walk around. Let's just say it was really hot in Florida...definitely hard to walk around outside during the day. My dad got me a waterproof cover for my PICC line I have in my arm so after walking around we all hung out in nana's pool :) it's so nice to swim again!
PARTY:
The party was held at my uncle's fire house station and there was a space for food, people and the band. Travis and his band played and then also my uncle David's band played. Such good music; the whole time we were there someone was playing. My dad and other uncles made kalua pork sandwiches and crawfish (cajun style) that had shrimp, potatoes and corn on the cob in it. SO GOOD! it took me a while to be comfortable enough to eat the crawfish...it freaked me out because they STARE at you!! haha. Cassidy met a lot of family that day...and i did too! a lot of people I haven't seen since i was little so I was also learning names and trying to understand how I'm related to them. My cousin Danielle (who i haven't seen since I was little) is getting married in Miami in feburary and we are all determined to be there! it will be so much fun and i'll (hopefully) be celebrating cancer free. After being in the hot room all day an hugging sweaty people we all went home and sat in the pool for 2 hours. we had like 10 people in there haha. Ale, travis and tam stayed the night :) I think that night there were 10 people sleeping under nana's roof!
The rest of the week was spent in tampa and st. petersburg. Cassidy left tuesday morning so we headed up to tampa with travis and tam; we stopped and hung out at the beach house in st. petersburg our friend's lent us for a couple of days. Dad made really good shrimp scampi and afterwards we headed to tampa to sleep. After dropping cassidy off at the airport (he went to maryland for a week to see family and friends) I hung out with Tam all day; we ate lunch with Lully then went back to St. petersburg to hang out with the parents, maile and chelsea. Nana was nice enough to drive chelsea and maile back and for between st. petersburg and bradenton (about 1 hour drive).
BUT...that's when the rains came. the weather had been beautiful until we stayed at the beach house and wanted to be outide. then it just rained all day. we were supposed to goto Busch Gardens on wednesday but it was too rainy :( :( :( so sad!!! even maile was sad. so, we went to the tampa aquarium which was fun for maile. it was just stressful to tidy up the beach house before we left, get to the aquarium and be done in time to get back to bradenton and pack up our stuff quickly before dropping maile and chelsea at grandad's for dinner then me and my mom go with bucha to aunt julian's house. it was chaotic due to mis communications and still needing to pack. we were all due to fly back home the next day; it felt like we had so much more time and then BAM i'm going back to texas. I'm still upset with florida and not letting us go on roller coasters :(
I had a blood test yesterday and my counts are almost back to normal. i'm still a little nutrapenic but i've been feeling fine this whole time.
I do have some good news and bad news:
Good news is that my insurance covers the stem cell transplant. yay! that means that we are waiting to hear from the stem cell team to figure out when they want to schedule travis' tests and start the process. hopefully monday we will find out!
the bad news is that my insurance does NOT cover my fertility treatments and egg harvesting. We are talking to my doctor to see if they can do anything for me to help out with the costs but it will cost about $10,000 to do the whole thing. Since I don't have a lot of time to figure out other ways to get that kind of money i'll probably end up just crossing my fingers and hope my ovaries don't die from all the chemo :( i guess only time will tell.
anyways...i'm sorry it took so long to write...i think i wrote a blog post but i don't see it...i guess it didn't get published. i promise to be better! i hopefully will start working out with a trainer this week...i definitely need to be more active before i sit in the hospital for 30 days.
i hope you all are doing well! keep in touch :)
-sav
Tuesday, August 2, 2011
He's a MATCH!!!!
goooooood news everybody!! Today I found out that my brother (Travis) is a match and will be my stem cell donor for my stem cell transplant! YAY!!!! this makes life a LOT easier now that we don't have to search the registry for a potential donor and wait an extra couple of months to do so. Knowing this we will have to time everything PERFECTLY; this includes not only my trip to Florida but also my egg harvesting and next treatment for chemotherapy. If we have to wait too long for the stem cell transplant to begin then we risk the leukemia coming back. It is CRUCIAL to keep me in remission; studies have shown that stem cell transplants work a lot better in the first remission. SO, knowing this, I may do another round of chemotherapy before starting the stem cell transplant. We also need to coordinate Travis coming up to Houston for a week to do his tests before I start chemotherapy for the transplant. It's tight so hopefully everything goes smooth and I can start at the end of this month/beginning of september!
As for traveling, my counts are quite low and not going up yet. I was in the hospital from 5:00 pm to 12:30 am getting blood and platelets. I came in to MDA for a blood test today and it showed that I need more platelets. So here i am, in the transfusion unit, waiting for my yellow platelets :) it's nice to lay down after a day of appointments; my mom and I have been going and going since 10:00am this morning (it is now almost 7:00pm) and I still have to get treatment....and pack. I need to pack!! I have to finish tonight because tomorrow morning will be busy with going back to MDA in the morning to get a blood test, paperwork to bring to FL with me and possibly a WBC booster shot. Then Janet is picking us up at 10:00 am to drive us 45 minutes to the airport. Cassidy leaves out at 12:00 pm and we leave at 1:00 pm. We will then head down to Nana's house for a giant sleep over (me, cass, chelsea, maile, mom, dad, and nana). I still don't have an immune system so i will be extra careful traveling and being around Maile, crowds and sick people. If you are sick and will be at the graduation party either avoid me altogether or don't come...I'm not sure when my counts will be up again so stay healthy for me!!
My bones are very achy today...not fun. Hopefully it's my bone marrow kickstarting and producing cells again.
Time to relax and hang out for a couple of hours before needing to worry about packing...
LOVE YOU!!!
-sav
As for traveling, my counts are quite low and not going up yet. I was in the hospital from 5:00 pm to 12:30 am getting blood and platelets. I came in to MDA for a blood test today and it showed that I need more platelets. So here i am, in the transfusion unit, waiting for my yellow platelets :) it's nice to lay down after a day of appointments; my mom and I have been going and going since 10:00am this morning (it is now almost 7:00pm) and I still have to get treatment....and pack. I need to pack!! I have to finish tonight because tomorrow morning will be busy with going back to MDA in the morning to get a blood test, paperwork to bring to FL with me and possibly a WBC booster shot. Then Janet is picking us up at 10:00 am to drive us 45 minutes to the airport. Cassidy leaves out at 12:00 pm and we leave at 1:00 pm. We will then head down to Nana's house for a giant sleep over (me, cass, chelsea, maile, mom, dad, and nana). I still don't have an immune system so i will be extra careful traveling and being around Maile, crowds and sick people. If you are sick and will be at the graduation party either avoid me altogether or don't come...I'm not sure when my counts will be up again so stay healthy for me!!
My bones are very achy today...not fun. Hopefully it's my bone marrow kickstarting and producing cells again.
Time to relax and hang out for a couple of hours before needing to worry about packing...
LOVE YOU!!!
-sav
Monday, August 1, 2011
B positive?!
Happy birthday to my nana today! It was so great to have her here with me and I can't wait to see her in Florida this week!
So last week Lilja was here which made me so happy because I probably won't see her for a while (she goes to UH Manoa for her lasat semester then is moving to England for 5-6 months). On Thursday Cass, Lilja and I explored Hermann park at sunset. It is such a beautiful park and it reminded me of my and Lilja's adventures in the parks in London. We walked around, took pictures and enjoyed being outside for the first time in weeks (it's way too hot to be outside for long during the daytime). That week we saw Captain America and then Friday we saw Cowboys and Aliens. On Saturday we drove down to Pearland to visit her Aunt that just moved down there from California and we dropped by to say hello to my Aunt Drexel and Dorothy. We had to go to the airport right after and then Lilja was gone :( It was nice having a friend to hang out with again...I hope to meet someone here I can just hang out with now and then...
Yesterday my mom and I got the car we are borrowing all cleaned up and inspected. Cassidy's car should be in tomorrow so it will be nice having two cars. It hasn't been too hard dropping Cass off at work and working it out so that we aren't stranded somewhere. Having the shuttle that takes us to MD Anderson has been very helpful.
I saw the doctor on Friday (07/29/11) and it looked like my counts were already on their way back up. They said I may need a transfusion on Monday so they scheduled an appointment for me to get my blood counts checked before going to Florida. They never seemed to have a problem with me going and I have been getting very excited to see everyone at travis' graduation :) However, today (after waiting 2 hours) I found out that my counts dropped very low and not only do I need both blood and platelet transfusions but I might need them through the week as well. I leave on Wednesday for Florida which doesn't give us much time to get a lot done. They scheduled my transfusions for tonight (Monday) and to go in Tuesday and Wednesday morning to see if my bone marrow is making blood, platelets and WBC on its own yet or if I should prepare myself to get platelets or something while Im in Florida. I am on a neutrapenic diet again and kind of bummed that my blood tricked me into thinking that I was getting better before it plunged down. I just have to be aware of who is around me and be thankful that the flight to Florida is short.
Funny thing: I am getting my platelets set up and hear the nurse say that my blood type is B positive. Now, I thought this was odd because at Queens they told me I was O positive and I received many transfusions with O positive blood type. I thought maybe I misundestood her and thought nothing more of it. Then when it was time to start blood she said it again. I asked her if B positive was my blood type and she said yes. I said that's odd because when I was on Oahu (just a month ago) the nurses told me I was O positive. The nurse here said that they have typed me at least 5 times since I've been here at MD Anderson, and that type is B positive. Now, I've heard of blood types changing after a stem cell transplant but I didn't hear about it happening from chemotherapy. So I am going to email my doctor from Queens and my doc here to see what happened! so so strange! I guess I'm B positive now :P
Hopefuly this all goes smooth enough and I don't need transfusions in Florida. Luckily Big Tam is looking for labs that I might be able to go to in Tamps..that will be nice to have that information if I need it.
Sorry it's a short blog; my ipad battery is dying and I have another hour before my blood is finished. what to do with myself! I think I can handle an hour..I lasted three weeks staring off into space on a hospital bed :P
love you all and I'll let you know how my counts go :)
-sav
So last week Lilja was here which made me so happy because I probably won't see her for a while (she goes to UH Manoa for her lasat semester then is moving to England for 5-6 months). On Thursday Cass, Lilja and I explored Hermann park at sunset. It is such a beautiful park and it reminded me of my and Lilja's adventures in the parks in London. We walked around, took pictures and enjoyed being outside for the first time in weeks (it's way too hot to be outside for long during the daytime). That week we saw Captain America and then Friday we saw Cowboys and Aliens. On Saturday we drove down to Pearland to visit her Aunt that just moved down there from California and we dropped by to say hello to my Aunt Drexel and Dorothy. We had to go to the airport right after and then Lilja was gone :( It was nice having a friend to hang out with again...I hope to meet someone here I can just hang out with now and then...
Yesterday my mom and I got the car we are borrowing all cleaned up and inspected. Cassidy's car should be in tomorrow so it will be nice having two cars. It hasn't been too hard dropping Cass off at work and working it out so that we aren't stranded somewhere. Having the shuttle that takes us to MD Anderson has been very helpful.
I saw the doctor on Friday (07/29/11) and it looked like my counts were already on their way back up. They said I may need a transfusion on Monday so they scheduled an appointment for me to get my blood counts checked before going to Florida. They never seemed to have a problem with me going and I have been getting very excited to see everyone at travis' graduation :) However, today (after waiting 2 hours) I found out that my counts dropped very low and not only do I need both blood and platelet transfusions but I might need them through the week as well. I leave on Wednesday for Florida which doesn't give us much time to get a lot done. They scheduled my transfusions for tonight (Monday) and to go in Tuesday and Wednesday morning to see if my bone marrow is making blood, platelets and WBC on its own yet or if I should prepare myself to get platelets or something while Im in Florida. I am on a neutrapenic diet again and kind of bummed that my blood tricked me into thinking that I was getting better before it plunged down. I just have to be aware of who is around me and be thankful that the flight to Florida is short.
Funny thing: I am getting my platelets set up and hear the nurse say that my blood type is B positive. Now, I thought this was odd because at Queens they told me I was O positive and I received many transfusions with O positive blood type. I thought maybe I misundestood her and thought nothing more of it. Then when it was time to start blood she said it again. I asked her if B positive was my blood type and she said yes. I said that's odd because when I was on Oahu (just a month ago) the nurses told me I was O positive. The nurse here said that they have typed me at least 5 times since I've been here at MD Anderson, and that type is B positive. Now, I've heard of blood types changing after a stem cell transplant but I didn't hear about it happening from chemotherapy. So I am going to email my doctor from Queens and my doc here to see what happened! so so strange! I guess I'm B positive now :P
Hopefuly this all goes smooth enough and I don't need transfusions in Florida. Luckily Big Tam is looking for labs that I might be able to go to in Tamps..that will be nice to have that information if I need it.
Sorry it's a short blog; my ipad battery is dying and I have another hour before my blood is finished. what to do with myself! I think I can handle an hour..I lasted three weeks staring off into space on a hospital bed :P
love you all and I'll let you know how my counts go :)
-sav
Thursday, July 28, 2011
The Egg Hunt
So I really meant to update 2 days ago...I've had three days of doctor's appointments and here is what happened..
On Monday morning my mom, nana and I went to Dr. Allon's office. Dr. Allon is a fertility doctor who is going to help me harvest eggs before I don't any more chemotherapy treatment. We talked for a bit about what the procedure is and when we should start the hormones. Basically I have a small window to do this procedure because I have to be well enough to do it (meaning my counts need to be high) and do it before chemotherapy. I have ten days of hormone injections and then two days later Dr. Allon will go in (while I am under anesthesia) and extract the eggs. The hormone injections are just an increase dose of what is already in my body and this will trick my body into producing more eggs. So instead of my ovaries producing one egg a month we are going to try and have them produce a years worth of eggs...so about ten eggs. He did an ultrasound to view my ovaries and count how many eggs I have right now; my right one is good but my left one is a little small and didn't have as many follicles in it. It could be from the chemotherapy or just how it was before all of this happened. Either way he should be able to get about ten eggs. Once extracted he will freeze them. The eggs can be frozen indefinitely until I decide to try and have a baby. They will then choose the best two eggs, fertilize them and then put them back into me. Doing it like this gives them a 40-50% chance of the pregnancy taking and going to full term. Another way to do it is to fertilize the eggs BEFORE freezing them; this gives them a 65% or more chance of working. But because me and Cassidy aren't engaged or married it makes things a little more difficult because there are strings attached with these embryos. So within a couple of weeks we will decide what the best option to do and hopefully save some future babies of mine. I am planning on starting the hormone injections while I'm still in Florida and have the procedure the week before I start chemotherapy. That way, even if Travis is a match and I have to start the stem cell transplant stuff, we have the time to extract the eggs.
On Tuesday I went in for blood work and got my counts. My WBC count is decreasing, like it should, so I just have to be careful about what I eat and who I'm around. My counts will continue to decrease this week and hopefully start going back up in time for me to fly to Florida. That's right, I'm going to Florida for Travis' graduation!!!! I can't believe I actually get to go! I'm so excited to see everyone for the week that I'll be there. We are having the party at my uncle's fire station on Anna Maria island....it will be good to be on an island again :) My mom, Cassidy and I leave for Florida on the 3rd of August and we will be there for a week. :) :) :) :) :)
Tuesday was a good day because my dad has finally gotten here after 3 weeks of business and travel all over the nation. It is SO good to see him!! I definitely missed him a lot. He will only be here until tonight (Thursday night) before flying back to Hawaii to fly to Florida with Chelsea and Maile (who I am VERY excited to see in Florida!) So that night we had a dinner party at Jan and Janet's house and had my cousin Tiffany and Josh come over too! We all hung out while Cassidy went to pick up my friend Lilja who I've known from my travels to London. She will be here until Saturday! So I am very excited and happy to have these people around me this week :)
Yesterday I was at MD Anderson alllllll day long. At 9:00 am I had a lung test to make sure my lungs can handle the stem cell transplant. Then at 11:30 I had a OB-GYN appointment to talk about another form of birth control that is like putting my ovaries to sleep for 3 months at a time...essentially it puts me into menopause for 3 months per shot. This will hopefully protect my ovaries from taking in as much chemotherapy...but nothing is certain. This is my best bet at hopefully saving them from failing. After that Cassidy, Lilja and I walked to Chipotle for lunch; we walked around the medical center and were in awe with the beauty of all the buildings that are hospitals. Lilja said it was like walking around downtown Seattle. We had to go back to MDA for a heart scan to make a base line of where my heart strength is now and how it is affected during my transplant. At about 4:00 pm we were finally done and went home. We met up with my mom, dad, Jan and Janet for dinner at this amazing restaurant called the Backstreet Cafe. They had an amazing wine list, amazing food, amazing service...just an amazing night! Cassidy, Lilja and I went to see Captain America after dinner which was a nice way to end the night. Good movie, full belly and good company.
Today we are planning on going to an art museum while Cassidy works. Lilja is an art major and while we were in London we went to 6 museums together for 5 hours at a time. I'm excited to go! There is also a zoo and a beautiful park. I think today will be a good day :)
I love you all and will update soon!
-savy
On Monday morning my mom, nana and I went to Dr. Allon's office. Dr. Allon is a fertility doctor who is going to help me harvest eggs before I don't any more chemotherapy treatment. We talked for a bit about what the procedure is and when we should start the hormones. Basically I have a small window to do this procedure because I have to be well enough to do it (meaning my counts need to be high) and do it before chemotherapy. I have ten days of hormone injections and then two days later Dr. Allon will go in (while I am under anesthesia) and extract the eggs. The hormone injections are just an increase dose of what is already in my body and this will trick my body into producing more eggs. So instead of my ovaries producing one egg a month we are going to try and have them produce a years worth of eggs...so about ten eggs. He did an ultrasound to view my ovaries and count how many eggs I have right now; my right one is good but my left one is a little small and didn't have as many follicles in it. It could be from the chemotherapy or just how it was before all of this happened. Either way he should be able to get about ten eggs. Once extracted he will freeze them. The eggs can be frozen indefinitely until I decide to try and have a baby. They will then choose the best two eggs, fertilize them and then put them back into me. Doing it like this gives them a 40-50% chance of the pregnancy taking and going to full term. Another way to do it is to fertilize the eggs BEFORE freezing them; this gives them a 65% or more chance of working. But because me and Cassidy aren't engaged or married it makes things a little more difficult because there are strings attached with these embryos. So within a couple of weeks we will decide what the best option to do and hopefully save some future babies of mine. I am planning on starting the hormone injections while I'm still in Florida and have the procedure the week before I start chemotherapy. That way, even if Travis is a match and I have to start the stem cell transplant stuff, we have the time to extract the eggs.
On Tuesday I went in for blood work and got my counts. My WBC count is decreasing, like it should, so I just have to be careful about what I eat and who I'm around. My counts will continue to decrease this week and hopefully start going back up in time for me to fly to Florida. That's right, I'm going to Florida for Travis' graduation!!!! I can't believe I actually get to go! I'm so excited to see everyone for the week that I'll be there. We are having the party at my uncle's fire station on Anna Maria island....it will be good to be on an island again :) My mom, Cassidy and I leave for Florida on the 3rd of August and we will be there for a week. :) :) :) :) :)
Tuesday was a good day because my dad has finally gotten here after 3 weeks of business and travel all over the nation. It is SO good to see him!! I definitely missed him a lot. He will only be here until tonight (Thursday night) before flying back to Hawaii to fly to Florida with Chelsea and Maile (who I am VERY excited to see in Florida!) So that night we had a dinner party at Jan and Janet's house and had my cousin Tiffany and Josh come over too! We all hung out while Cassidy went to pick up my friend Lilja who I've known from my travels to London. She will be here until Saturday! So I am very excited and happy to have these people around me this week :)
Yesterday I was at MD Anderson alllllll day long. At 9:00 am I had a lung test to make sure my lungs can handle the stem cell transplant. Then at 11:30 I had a OB-GYN appointment to talk about another form of birth control that is like putting my ovaries to sleep for 3 months at a time...essentially it puts me into menopause for 3 months per shot. This will hopefully protect my ovaries from taking in as much chemotherapy...but nothing is certain. This is my best bet at hopefully saving them from failing. After that Cassidy, Lilja and I walked to Chipotle for lunch; we walked around the medical center and were in awe with the beauty of all the buildings that are hospitals. Lilja said it was like walking around downtown Seattle. We had to go back to MDA for a heart scan to make a base line of where my heart strength is now and how it is affected during my transplant. At about 4:00 pm we were finally done and went home. We met up with my mom, dad, Jan and Janet for dinner at this amazing restaurant called the Backstreet Cafe. They had an amazing wine list, amazing food, amazing service...just an amazing night! Cassidy, Lilja and I went to see Captain America after dinner which was a nice way to end the night. Good movie, full belly and good company.
Today we are planning on going to an art museum while Cassidy works. Lilja is an art major and while we were in London we went to 6 museums together for 5 hours at a time. I'm excited to go! There is also a zoo and a beautiful park. I think today will be a good day :)
I love you all and will update soon!
-savy
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