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
Tuesday, August 30, 2011
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
Subscribe to:
Posts (Atom)