Made it to the year 2013 and 24 years old!

Made it to the year 2013 and 24 years old!

Happy day everyone! I am pleased to say that I have a couple accomplishments to brag about today on my day of birth! 

First of all, many thanks to my mother for bringing me into the world today and for both my mom and my dad for raising me. I know I gave them hell while I was growing up but I only did it so that when I mellowed out they would view me as an angel :) (but seriously, I was a huge handful and my mom would cry to my Bucha about how if she had me first she would never had any more children...sorry mom!)

I now have a 1 1/2 year old immune system that I am so VERY proud of! I have not gotten sick for an entire year! Even as people around me (those older and those my age) get sick I have managed to stay clean and clear of it! This is a big accomplishment for me and I am looking forward to another healthy year :) 

I guess the main accomplishment of making it to today is that I made it to 24 years old! It is crazy to think that less than 2 years ago I was a young girl of 22 going through cancer treatment. Now, at age 24 (on 4/24/13) I am one semester closer to being a college graduate, one step closer to getting married and one step closer to figuring my life out! I still have a lot to do but I am looking forward to it all. Except paying the bills. I would much rather NOT do that. But everything else, yes. I am ready! Maybe. I still don't know what I'll be doing by next summer but I do know that I will have my degree by next summer. And that is all I need to know and plan for now :) 

Also! As I have been working at Fernandez Sports and Physical Therapy for about 3 years (give or take for the time I was away in Texas) Linda Fernandez (my boss who gave me my old job back when I returned to Hawaii...which I will write about in further detail later :D) is going to help me get my BASI Pilates Teaching License this coming fall. It is an extensive program composed of 3 long weekends and a total of 10,000 hours of learning the main Pilates exercises on the various types of equipment and how to properly teach them. Since I have been working with Pilates at the physical therapy clinic I have some background on what an amazing program this is. Even with all that I have learned these 3 years I have maybe learned 2% there is to know about BASI Pilates. This will be a HUGE stepping stone for me; there are a lot of different Pilates clinics that I will be able to attend that will teach me more about anything; dancing, rehab, cancer patients, etc. Guess which one I want to do? You guessed it! Pilates for those who have gone through cancer treatment. This year has been a huge eye opener to how insurance is royally screwing us physical therapists and patients! HMSA (Hawaii's BCBS) has regulated the S*** out of physical therapy to the point where they don't even look at what the doctor prescribes for the patient; we have a very exact form we must fill out with numbers and then some doctor somewhere on the mainland decides how many visits the patient should get....like 6 visits. Since the new forms are all about numbers, HMSA is now only really focusing on acute injuries that you can rate the pain and degrees of movement. But what about those who want preventative medicine or who need to strengthen their muscles after surgery or cancer treatment, you ask? Maybe they will get 4 visits because these types of patients have issues that they can't really "measure".  For example; After I was out of the hospital (post-SCT) and feeling ready to get back on my feet and wanting to get stronger I went to the MD Anderson physical therapy clinic to try and get approved for some good old fashioned out-patient physical therapy. Since I had been working in PT I knew the benefits to having someone create a program for me and help me make sure I do it...I needed to get stronger! However, since I was able to walk fast, do all of my exercises easily enough (on the first visit), had no pain, and no real restrictions I was not granted physical therapy. I had lost 20 lbs, most of which was my muscle, and if you knew me before cancer you would know that I was strong and very fit. This was so upsetting to me because I didn't even realize that was the reason until I found out this information about HMSA. Everything made sense then. With all of this in mind I want to be there for cancer victims who want to get stronger and better without the hassle of insurance screwing them over (like you are supposed to build up your pelvic floor and get stronger in 4 visits?!?! yeah, right.). I want to work with them to help them move past their pain, stiffness, weakness and be the strongest they can be, physically! I mean, they are FIGHTERS and SURVIVORS! They deserve to give BACK to their bodies what cancer took away. 

Whew. Sorry about that rant...got carried away ^_^ Guess I found what I'm passionate about!

So this next year will be a big year for me and when I'm 25 I hope to tell you all what my next big step will be :)

Anyways...where was I? Oh yes...IT'S MY BIRTHDAY!!!!!! YAY!!!!! And even though today is a rainy rainy rainy rainy day after my class and a much needed haircut (I like it super duper short now) me and cassidy are going to hang out with our beloved Zoe. I don't have much planned...probably go see a movie...hopefully have some cake and ice cream...but the fact is that I have the day off with my little family and will be very happy to hang out with them :) I am hoping this weekend will be nice so that my girlfriends and I can go on a hike and go to the beach. We shall see!

I wish everyone a happy day on this rainy day here in Hawaii. I am so close to finishing up with this semester I can almost taste it! Almost...I still have a couple projects and papers to write...boo. But I should be getting A's in all three of my classes. BOOYAH CHEMO BRAIN! guess who's awesome?? ME! :D

LOVE YOU ALL AND THANK YOU FOR HELPING ME GET TO 24 YEARS OLD!! I could not have done it with out all of your support!! 

- Savvers, the 24 year old. One step closer to being apart of the mid-20's group :D     

Beautiful beach days :)

This weekend Cassidy, Zoe and I are hitting up the beach. We both have the weekend off, which is a rare occasion for us to have. Luckily it has been gorgeous out and we found a good spot for Zoe to swim in shallow water. She is so funny as she leaps through the waist deep (waist deep on her is ankle deep for us) water. It is crazy how much we love to hang out with Zoe; it is what we look forward to do on our days off. She is such a wonderful and loving dog! And we are so lucky to have her :)

So lets go back to a year ago....I'm sorry for the lack of details but my chemo-brain at the time was pretty bad so I don't remember a whole lot.

In April 2012 I had an amazing 23rd birthday at Jan and Janet's house with all of my Texas friends :) We had a wine tasting party with delicious food that my friends brought and my dad made. It was a wonderful night and I will always remember it!

In May I think I tried to start looking for a job. Summer was working its way back into Texas and was starting to get hot again. I tried to work but if it was outside it was too much for my body to handle. It was around this time that I started thinking about going back home. I was having a really hard time dealing with the heat. If I got too hot my body would itch and get extremely uncomfortable; even my scalp hurt. I told Cassidy that I was thinking about moving back and he said that he would look into it with Apple to see if there were any openings on Oahu. As it turned out there was an opening at the Royal Hawaiian Apple Store in Waikiki. After talking with the store leader there Cassidy was offered a $7 riase to work there. With that in mind we started seriously looking into moving back to Hawaii.

June 2012

Since our lease to the apartment was coming to an end we had begun a search for a place that would be a little cheaper since I didn't have to be as near the hospital anymore. Our lease at Versailles ended mid July so by the time that we had found a perfect townhouse for our family of three (me, cass, and zoe!) we had decided to move back. With only a couple of weeks to sort out the details of moving back, time was of the essence! We started packing things into boxes, putting most of our stuff into storage and was thinking of a plan for the next couple of months. Cassidy had to go to work on Oahu but my 1 year checkup at MD Anderson was scheduled for September. Since I was having such a hard time with the Houston weather I was starting to look at other possible options. My dear friend Lori (who was suffering with cancer and was about to start home hospice care) was coming back and forth to my place and a friend's place in Colorado (Keystone) where she was going to be able to have home hospice care for free. Since it was taking so long to get settled she had to come back to Houston to get a refill of her pain medication that she needed. She was getting so weak and could barely walk so I was helping her as much as I could and keep her as comfortable as I could so that she could rest and be pain free. It was so wonderful to have her living with us for a couple of weeks. Since she was going to be living in Colorado, we were talking about having me move up with her so that I can be with her through hospice care until she passed away. I was so excited to go on this adventure with her; living in beautiful Keystone and being with Lori so that she didn't have to go through it alone. As June came to a close she told me that she was going to have to stay with us in July so she could get a refill on her pain meds and then go back up to Colorado and finalize everything with the home hospice care.  Of course with us, nothing ever goes according to plan.

July 2012

The first week of July I picked up Lori from the airport and got her settled at our apartment in Houston. That Monday we drove to her doctor's office for her appointment. What we found out was that he gave her a new prescription for her pain medication but he made it for a week later; meaning Lori was going to have to go through a week without any pain medication. Since she was expecting to get a refill that day she didn't try to save it and was out by that Monday. That week as we waited for the next Monday to come she went from talking and being herself to not being able to move or breathe without pain. Since she wasn't getting any transfusions anymore she was low on blood and extremely weak; she could barely make it to the bathroom. As her health declined we just counted the hours until we could fill her prescription. Unfortunately on July 7th her time of waiting ended. I was at home letting Lori sleep when I noticed that she was having a hard time breathing. I quickly came to her side and Lori looked very pale and kind of blue. Not knowing what to do I came to her side and asked if she was okay...if she needed help with something. She was having a hard time breathing and collapsed into my arms on her side. I quickly called 911 and told the lady on the phone that Lori had stopped breathing. I couldn't believe that she wasn't breathing. The lady told me to start compressions while she sent out a unit to help. As I tried to make her breathe I knew that she was gone....even as the paramedics charged in and took control I knew that it was too late. Cassidy showed up and together we followed the ambulance to the hospital where she was pronounced dead. My friend who I was so close to and loved very much had finally gotten her wings and was no longer in pain. That was what I had to keep telling myself to make it okay. She was preparing herself to move on and it just came faster than we had anticipated. I miss her so much; she was such a good person to talk to and she could relate to everything that I was going through. I think about her often and wish that I could talk to her still. I hope that she is resting and happy wherever she is now. 

Since I was no longer going to go to Colorado Cass, Zoe and I packed the car full of stuff and hit the road to go to California where I would stay with a friend until September. When September would come I would go back to Houston (flying) and see my doctors for my 1 year check up.

My next post will be about our road trip across the country :) I love you all and will be back soon, promise!

I'M BACK!!

Good morning everyone! It has been exactly 1 years since my last post and my blog has FINALLY decided to work again!!! YAY! soooo I will be updating (much more often I promise!) and keeping in touch with you all!

I have been back in school and doing well. I have 2 weeks left before summer vacation! It has been great (but exhausting) being in school and I am happy that my brain can still function well and my chemo-brain seems to be leaving me as well.

I have been working a lot of Fernandez Sports and Physical Therapy (where I was working before I was diagnosed) and it has been a wonderful place for me to help others with their physical problems while also giving me therapy as I help them. I have been working out, starting to run again (very slowly hah) and doing Pilates to help get my posture back and my body strong again. I have been feeling great and even managed to NOT get the flu this bad flu season!

I am taking the summer off to just focus on work and I'll resume school again in August (for 3 of my last 5 classes!). I am planning on graduating next May (2014) with my Kinesiology and Rehabilitation Sciences degree :)

Anyways, I am in class so I will go. I will update soon to let you know more about my future plans and where I have been this past year

Aloha!

testing 123

test!

Test Results

So the last time I wrote I was getting tested for cancerous cells that may or may not be in my cerebral spinal fluid. After 2 lumbar punctures (and many painkillers) they came back clear. I had talked to a radiologist who decideed to not do any radiation on me because she doesn't like the idea of doing radiation when we don't know for certain that there are cancer cells to kill. Radiation could cause graft versus host disease at both the site and internally so it would be best to avoid it if possible.

After talking to my doctor it seems like the best thing to do is just wait and watch what happens. The numbness in my legs has mostly disappeared. So who knows, maybe it was just something no one could explain and went away on its own.

I am excited to back to working out; it has been a couple of weeks since I've gone so i will be hurting tomorrow for sure. I was beginning to bike around but it's storming right now and I'm still not back to myself yet.

I have been really enjoying my time with Zoe; she is learning new tricks and also just gives me great company while i'm home all day. I think it might be time to start looking for a job again. I go to the doctor tomorrow (I had some numbness on my left upper back for some reason yesterday) so I'll be able to tell if I'll have time for a job.

My birthday is coming up! I cannot believe that 10 months have already gone by since i got diagnosed and i'll be celebrating my 23rd birthday in Houston, Texas! Janet is being so WONDERFUL and is hosting the party at her house (Jan will be gone on buisness :(). There will be around 10 of us and I decided it will be a wine tasting party (even though I won't be able to drink); it is a requirement for the women to wear a dress and the men to wear a tie. SUIT UP! So excited! It will be held this Thursday at 6:00 pm and dinner will be kalua pork sliders made by the one and only Stan Rollins! My dad gets in on wednesday and my mom and maile come in the following day in the afternoon! I'm so excited to have them here! My dad is here for the ms 150 bike ride that he will be doing this saturday and sunday with my neighbors dan and melissa. We will drive to Austin and meet him there :) busy busy!

anyway I am doing good, feeling about 75% better and ready for action!

i love you all!

-sav

I'm back!

Hi everyone.

It's been a while. I guess I've been avoiding this...though I am not entirely sure why. I guess I want to be done with this whole cancer thing and writing in the blog keeps it alive? Well I can't run away from it and I owe it to everyone to keep you all updated and informed to what's going on in my life. I owe it to you all because you were there for me when I needed you most. So here is what has been happening for the past couple of months.

I have been going to the doctor's less and less as I get healthier and farther into my treatment. I started going back to MDA every two weeks and I have to say it has been WONDERFUL to be there only once every two weeks! My counts have been great and it was finally time for me to look at doing some rehab to get myself back into shape. My doc approved for me to go back to the Train Station where I go with Janet to workout with a trainer twice a week. It's so nice being back there with them and seeing Janet all the time :). I also started going to a chiropractor who specialized in the type of muscle work that I worked with back in Hawaii. This office also had the patients do rehab so after getting worked on I worked with a trainer and did core workouts. The main reason I started going to the chiropractor was because I started getting these weirds spouts of numbness that started in my butt/hips and would quickly go down my legs then disappear. I hoped that with muscle work on my back and the rehab they had me doing to strengthen my back and core would quickly clear this problem up. But even with my working out and getting stronger and being more active this problem only got worse. It was all very strange and both my doctor and chiropractor had no explanation as to why I was getting this numbness. More to that later.

I got a PUPPY!!!!!! One night a neighbor of mine was walking her dogs and me and Cass just happened to run into her and she had the CUTEST puppy EVER with her. We found out that she found the puppy with her mom in a cage on an ant hill abandoned. She was looking for a home for the puppy and I quickly said YES to take her in!! I asked Cassidy first (of course) but there was really no question about it...you couldn't say no to that face! We named her Zoe and we think she is a mix of terrier and possibly pomeranian. She is fluffy and doesn't shed and is so so so cute! I love her and it has been great to have her to take care of while I sit and do nothing all day. I am definitely getting tired of doing nothing all day...

I got to go home! I asked my doctor if I was able to fly to Hawaii and visit for a couple of weeks and he gave me the okay! This was in February when I asked and when I told my parents that I could come home my mom got me a ticket to come home ten days later! I was so excited! Cass sadly had to stay home and take care of the puppy :( The trip home went so smooth; I wore a mask on the plane and at the air port but because it was off season for flying the airports and planes weren't very full. I guess I'm so used to being able to sit and kill time that by the time I got to Hawaii I felt like it had gone by quickly! Being home was really nice; I got to hang out with Maile a lot. My friend Kailie (who came up to visit when I was on Oahu) came up from the Big Island to visit one weekend which was so nice of her to do! It was great to see her and her family again. We had a party at my house for all my Hanai family to come over and see me; it was so amazing to see everyone! It was worth coming home if only to see the people who have supported me through this tiresome journey of mine. Thank you to my mom and dad (we used his miles to get me home) for bringing me home to see everyone! The rest of my stay was pretty mellow; lots of rain, only a couple days at the beach (wearing A LOT of sunscreen) and hanging out with my friend Lani. By the time I had to go back to Houston I was ready to go back...I'm starting to really see it as my home :)

Now back to my numbness in my legs:
The numbness keeps flaring up whenever I look down or bend over; since it was still bothering me a lot (and by bothering me I mean it annoys me that I don't know why it's happening but it doesn't hurt me or cause any pain) I asked my doctor if I could get a MRI to see if they can find anything that is causing this numbness (we had already done a X-RAY and that didn't show anything like a slipped disc). I got the MRI and there was something on it that caused some concern; the dura mater on my cauda equina was slightly enhanced. Basically this means the thick cover on the tail end of my spinal cord is slightly thicker than normal. Apparently this isn't good. To find out if this has affected my cerebral spinal fluid (CSF) I went to get a spinal tap (Lumbar puncture; LP). I was really scared about getting it because I don't get sedated for the procedure so I had Cassidy come with me and hold my hand the whole time :) The procedure itself wasn't bad; the numbing shot hurt the worst and it was just freaky to have a needle draining the fluid out of my spine. Cassidy had done some research to see how I might react to the procedure and everyone was saying that I'll get a headache and I need to be laying down completely flat for the rest of the day if not for the next couple of days. Well, I got a headache alright. If I wasn't laying down my head hurt...and then even when I was laying down flat my head hurt. I took tremedol to try and kill the pain but that stuff does no good! I had the LP on thursday and by sunday I had extreme back pain with a killer headache. I had Cassidy leave work early and take me to the ER. There they had a stretcher waiting for me and they immediately hooked me up to an IV. It got weird and worrisome when I told the doctor there that I couldn't urinate. After hearing that I got admitted to the hospital and a catheter was placed. Cassidy stayed with me the whole time :) The doctors then proceeded to try and find out what was wrong with me. I had another MRI done (which showed nothing) and all the tests from my CSF came back negative. I had insanely bad headaches from the LP and I eventually was able to go to the bathroom on my own again. By Tuesday things were back to normal except for my headaches. My doctor decided to discharge me and give me stronger pain killers for my headaches which should go away in a week...hah. My dad was in Florida during my stay at MDA so I asked if he could come to Houston and visit. He came in Wednesday and is here until Saturday morning. On Thursday we went to my follow-up doctor's appointment to talk about what happened in the hospital. It concerned my doctor a lot that I couldn't go to the bathroom and also that it happened again after I got out of the hospital (Wednesday night). He said this problem is most likely caused by that slight enhancement of my cauda equina. This part of the spinal cord controls your ability to go to the bathroom; since it has been affected by something it has altered my ability to control myself.

This is where it gets a little sad and tricky...

The reason that my spinal cord has a slightly thickened area may be caused by leukemic cells that I originally had when I was first diagnosed. I had so many white blood cells in my blood that some escaped to my spinal cord and didn't die from the chemo and transplant. Now, my bone marrow is still completely clear of cancer and the gene that altered my chromosome to begin with is still gone, but it seems that I may have some leukemic cells to get rid of still. These cells could be the reason I kept getting numbness in my legs or why there is a slight enhancement of my cauda equina. The tricky part is that we can't really test it and be 100% sure. That area is still very delicate since it is my spinal cord and we can't exactly test it...the tests from my CSF are clear and don't show anything but since there is only a little bit of cells then it's possible that they are there but just didn't get picked up. So I'm going to meet with my neurologist, radiologist and stem cell doctor next week to discuss what to do...I think they are thinking of doing radiation on a small part of my back where they think the leukemic cells might be. Not sure yet what the side effects are for that but I think that it's all pretty minimal. Hopefully this "relapse" doesn't last long, we can kill the cells, and I can go back to being cancer free and work towards being healthy again. I was starting to look for a job but I think I have to put that aside for now too.

I hope to write again when I find out more information about the plan to treat this little problem of mine. My parents are coming up in April with Maile so if I haven't written by the 21st of April expect something sometime after that!

Wish me luck

100 DAYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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

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

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

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

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

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

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.

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

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!

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 :)

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 :)

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

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

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

-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

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

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!

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