Tuesday, July 29, 2014

As one chapter ends, another one begins..

I know it has been a while, but I wanted to thank everyone who has still been reading my blog! A lot has been going on since my last post:

- I graduated from the University of Hawaii at Manoa last fall with my degree in Kinesiology and Rehabilitation Sciences
- Cassidy and I are getting married on August 16th (yes, in less than 3 weeks!)
- We live in Austin, Texas now and are in the process of buying a house!
- I am applying to Physical Therapy school in October (wish me luck!)
- I will go to my three year check up in September at MD Anderson

I have been working in a chiropractic clinic called Salus Chiropractic (saluschiropractic.com) and it has been AMAZING working here. I have learned even more about what chemotherapy does to our bodies and how it is still affecting my spine and body even after all of these years. I am so fortunate to have found a great job with great people who genuinely care about your health.

I leave to go to Kauai for the wedding this Friday! I am packed and ready to go! Cassidy and I have been struggling to try and save as much as we can for the down payment on our house (along with needing to buy another car, furnish the house, finding another roommate...) but we will somehow manage to get it taken care of. We have moved across the pacific ocean 3 times, fought my disease together, got me through my undergrad together, and planned a wedding (okay, my mom has planned 90% of it :D), so I know that we can tackle this! If I get accepted to the University of St. Augustine, I will be in school for only 2.5 more years and I will FINALLY be able to contribute to our savings account! It seems so far away, with me not being able to work while in school, but I am so anxious for the future so that we can finally breathe a little easier and Cassidy can finally find a job that won't make his body hurt so much and truly enjoy his days at work. He has been such a support to me financially that I don't think that I would have been able to dream about living in my own house in Austin! He is my rock, and I love him so much!

This next chapter in our lives will be tough (yay doctorate school!) but I couldn't be more excited!

Love you all,

Savy

Saturday, September 21, 2013

2 year cancerversary!

Hello!

So yesterday my immune system turned 2 years old! I can't believe that 2 years has already gone by since my stem cell transplant. I was bald, had gone through 3 rounds of chemotherapy and was about to go through the roughest months of my life. But I am thankful to say that even through the bad patches, weak days, low blood pressure, sick stomach, no taste buds (which then made everything taste horrible), no muscles, dry eyes and mouth, night sweats, menopause, hot flashes, brown hair and lots and lots of pills...I made it out alive, healthy and well. I now have new and stronger friendships, a finace, a puppy, and a closer family because of it. I wouldn't change it for the world.

Cassidy and I went out to dinner last night to celebrate my "birthday". We went to a nice restaurant called Kincaid's knowing that a friend of mine is usually working there. She was able to hook us up with two free appetizers (crab and artichoke dip and panko fried brie...nom nom nom) and $10 off the bill. We probably should've got appetizers for our meals since by the time we actually got our food (pasta for me, steak for cassidy) we only ate like...maybe half haha. It was a good night :)

My dad informed me yesterday that a friend of his died yesterday from AML. He was in his mid 60's and was diagnosed August 1st, 2013. After trying chemotherapy the doctor told him that his cancer was not responding and he never got into remission. Due to his immune system being down from the illness and chemotherapy he developed pneumonia that would never go away, thus disqualifying from any clinical trial or stem cell transplant. I feel for his family and friends and I hope that he passed away peacefully. It makes me realize how lucky I am that things went so well for me. I got into remission after the first round of chemotherapy. My brother was my match for my stem cell transplant. I didn't get infections. I didn't have any GVHD problems. This story reminds me that things could have gone a different way and I am thankful to have had the people around me to help me get through it. With Cassidy bringing me to the hospital to my mom being my caregiver and my brother donating his stem cells, I have had amazing support and I will forever be thankful and in your debt. Never take advantage of those around you...because you never know when life is going to get in the way and make you jump over obstacles.


I am still continuing my hormones and after talking to my doctor he agreed to not do the immunosuppressants since the hormones seem to be doing so well. I still plan to go back to Houston in January to see him and hopefully he will be suffice with how I'm doing and not prescribe me tacrolimus :) I have been taking my supplements to help with my Vitamin D and Calicum intake so I'm sure next year when I have another bone density scan I will see only good results across the board.


Here is a picture of me getting my stem cells. Thank you mom for taking this picture...I know I was resistant to it but now I wish I had taken more!

I am holding up the tube that has the stem cells going into my port in my chest. They are a light red/orangey color.

Me being embarrassed in front of the 10 doctors/interns that were in my room...luckily it only lasted 15ish minutes. 
Here is my doctor and a couple of the nurses/interns/doctors/team that were all in my little room to stare at me while I got my stem cells. Not. Awkward. At. All. O_O

Here is my mom attempting to extract Travy's stem cells with a GIANT needle =P

And here is Travis actually getting his stem cells taken out! Since he had one arm getting blood out of it (and then the white blood cells/stem cells are then filtered out) and the other one getting his blood put back in....we attacked him with super hero gear and announced to the world that this is STEM CELL MAN! Thanks Travy for everything and letting us dress you up while you couldn't move =D

More pictures to come...

Love you all,

Savy

Monday, September 2, 2013

RESULTS!

Hey everyone!

School is back in session and I have survived my first week of classes! I am taking a swimming class (which I am enjoying so far!), lower extremity assessment, management strategies in athletic training (boring -_-), first aid/CPR training, and Principles of Kinesiology (a class I should have already taken in my second year but was unable to until now...). So not a big load (no science classes and labs!) so I think I'll do just fine for my last semester as an undergraduate! Aside from my classes being EXTREMELY COLD (literally had jeans, a tank top, long sleeve, jacket and a scarf on and I was still freexing my buns off) it looks like it'll be a good semester :)

So I've been waiting for a phone call for over a week now from MD Anderson to tell me my results for my bone marrow biopsy. Since I never got a call (under the assumption that no news is good news) I went onto My MDAnderson to email my doctor when I remembered that they put all their reports on My MDAnderson! DUH!

So...I looked up my reports for all the tests I had while I was in Houston! Here is what I got...

 BONE DENSITY EXAM


FULL RESULT:
Examination:  Bone Mineral Density, 08/20/2013 

Clinical History:  A 24-year-old female with AML.

Indication:  Evaluation of bone mineral density.

Comparison:  09/25/2012

Technique:  Bone mineral density of the lumbar spine (L1-L4) and bilateral hips was obtained using Hologic dual-energy x-ray absorptiometry.

Findings: 


Bone Density:
---------------------------------------------------------------------------
Region     Exam Date   BMD      T-        Z-     Classification
                                     g/cm2  Score  Score
---------------------------------------------------------------------------
AP Spine (L1-L4)
                 08/20/2013  0.929   -1.1     -1.0     Osteopenia
Femoral Neck (Left)
                 08/20/2013  0.859    0.1      0.1     Normal
Total Hip (Left)
                 08/20/2013  0.881   -0.5     -0.5     Normal
Femoral Neck (Right)
                 08/20/2013  0.857    0.1      0.1     Normal
Total Hip (Right)
                 08/20/2013  0.862   -0.7     -0.7     Normal
-----------------------------------------------------------------

World Health Organization criteria for BMD interpretation classify patients
as: Normal (T-score at or above -1.0), Osteopenia (T-score between -1.0 and 
-2.5), or Osteoporosis (T-score at or below -2.5).


Previous Exams:
-------------------------------------------------------------------------
Region  Exam  Age  BMD  T-score   BMD Change vs      
              Date           g/cm2             Baseline   Previous
-------------------------------------------------------------------------
AP Spine(L1-L4)
     08/20/2013  24  0.929    -1.1      -2.6%          -2.6%    
     09/25/2012  23  0.955    -0.8                              

Total Hip(Left)
     08/20/2013  24  0.881    -0.5      4.5%*          4.5%*    
     09/25/2012  23  0.843    -0.8                              

Femoral Neck(Left)
     08/20/2013  24  0.859     0.1      8.1%*          8.1%*    
     09/25/2012  23  0.795    -0.5                              

Trochanter(Left)
     08/20/2013  24  0.654    -0.5      6.6%*          6.6%*    
     09/25/2012  23  0.614    -0.9                              

Intertrochanteric(Left)
     08/20/2013  24  0.979    -0.8       4.0%           4.0%    
     09/25/2012  23  0.941    -1.0                              

Ward's(Left)
     08/20/2013  24  0.767     0.3       6.1%           6.1%    
     09/25/2012  23  0.723    -0.1                              

Total Hip(Right)
     08/20/2013  24  0.862    -0.7       1.7%           1.7%    
     09/25/2012  23  0.847    -0.8                              

Femoral Neck(Right)
     08/20/2013  24  0.857     0.1       4.4%           4.4%    
     09/25/2012  23  0.821    -0.3                              

Trochanter(Right)
     08/20/2013  24  0.633    -0.7       2.2%           2.2%    
     09/25/2012  23  0.619    -0.8                              

Intertrochanteric(Right)
     08/20/2013  24  0.969    -0.8       1.5%           1.5%    
     09/25/2012  23  0.955    -0.9                              

Ward's(Right)
     08/20/2013  24  0.726    -0.1       2.7%           2.7%    
     09/25/2012  23  0.707    -0.2                              
-----------------------------------------------------------------
*Denotes significance at 95% confidence level, site specific LSC for AP Spine
= 0.029 g/cm2,  site specific LSC for Total Hip = 0.033 g/cm2,  site specific
LSC for Total Hip = 0.033 g/cm2

IMPRESSION: 
1. The findings are within the range of osteopenia for the lumbar spine.  
2. The findings are within normal range for the bilateral total hips and femoral necks.
3. As compared to 09/25/2012, there has been a statistically significant increase in bone mineral density at the left total hip and left femoral neck.



**** Basically we want my numbers to be closer to 0 and NOT negative. Even though my spine density has decreased by 2.6% it is important to note that in my hips and femoral neck (head of your femur) the density has INCREASED. So to help my spine out I will be drinking more milk/soy milk and running more (and swimming) and doing more Pilates/weight training to help it out!



BONE MARROW ASPIRATION/BIOPSY


BONE MARROW DIAGNOSIS

Pathology Report
Bone marrow (left), aspirate smears, touch imprint, and clot and biopsy specimens:
Variably cellular bone marrow in which 90% of the specimen is acellular (<1%) and 10% of the specimen is cellular (40- 50%) with hematopoiesis
No morphologic evidence of acute leukemia

COMMENT
The patient has a history of acute myeloid leukemia with monocytic differentiation diagnosed in our department in June, 2011.
There is no morphologic evidence of acute myeloid leukemia in this specimen. Flow cytometry immunophenotypic analysis showed no increase of blasts.
We defer to the results of cytogenetic or molecular studies to exclude the presence of minimal residual disease. 

*** In other words....they found NO evidence of AML (or cancer cells)! :)

So, those were the most interesting results I have. My lung capacity did increase from last time which I am happy about too! At first I was kind of bummed that my bone density decreased a bit in my spine but now that I know that it also increased a bit in other areas I know that I am on the right track to keeping my bones healthy! I have also started taking a Vitamin D supplement to help my body absorb calcium into my bones. 




In other news...

Cassidy is in Sarasota, Florida to check up on his mom's house! He is getting together with my Bucha and some family and I wish I was there!! So jealous! His good friend James came down with him and together they hung out with Jame's grandmother too :) Cass found out that he has amazing tenants living in the house and they have been doing a wonderful job at maintaining the residence. Cass is going to work with them to help update the house a bit more (like painting). This was such good news to hear and I'm happy that we have great people who care about his property! Again...I wish I was there to see my family but I know that we will take a trip to Sarasota together soon...maybe next year! 

Okay, I need to read for my classes (yes..I have been procrastinating...but look! y'all got a blog update out of it :) ). I will keep you updated as the semester goes!

Love you all!

Savy


Look what I can do!!! It seems there are benefits to updating on an actual computer and not an iPad.... Now, my question is...would you like me to put images on each blog entry based on the time or should I just post a new blog entry of a time line of us (me, zoe, cass, family)? let me know please! I'll do whatever is easiest for y'all!

I expect you all to have gone "awww" :)
Love my Zoe!

Saturday, August 24, 2013

Year 2 check up results

So I have arrived back from Houston and finally had some time to update about my results! I still have yet to hear about my bone marrow biopsy I had on Wednesday (8/21/13) but I guess no news is good news :) 

On Tuesday (8/20/13) I saw my doctor and there were a couple of things that have changed since my last visit in 2012. My bone density scans came back and it looks like I lost some bone density in my spine (not quite osteoporosis, they call it osteopenia meaning my bone density is less than normal). That means that my vitamin D intake has not been enough as well as my calcium intake. So I have gone to the grocery and picked up a couple vitamins that will help me keep my bones strong since my body can't naturally do it anymore (thanks to menopause). I have been getting sun but I always put a lot of sunscreen on which reduces the amount of vitamin D my body can absorb. Talk about a catch-22 right? I need vitamin D to keep my bones strong but I get dirty looks from the doctors when they see I have a tan. I put the sunscreen on and sit under trees! What more do you want from me?! I live in Hawaii! It is very hard to avoid the sun! >.< So I guess this is the end of the year without pills (not quite a year but it has felt like it!) and now I will start setting reminders for myself :(. I am also setting reminders to take my hormone pills, cream and patch (that I change out every 2 weeks). Thank Steve Jobs for the iPhone! Without it...I fear what would entail given my lack of memory when it comes to taking pills. 

So, the hormones I am taking are to help get my body back into balance. They shouldn't give me any migraines like birth control does because with birth control the hormones are more than what the body produces to try and control ovulation. With replacement hormones they are just trying to replace what would normally be there if I wasn't in menopause. I'm excited to start them tomorrow and cross my fingers and hope for a decrease in hot flashes!

***BEWARE (father, this is mostly pointed towards you): Reader discretion advised. Female parts will be talked about and I apologize for any discomfort I may cause. You have been warned and may proceed with caution.


My other major issue I've been dealing with since going through menopause has been 
vaginal dryness. Chemotherapy has caused my eyes to dry up as well as my mouth (granted I can almost eat toast now without a gulp of milk with every bite) and it may be causing this dryness as well. Menopause definitely causes vaginal dryness and it has been giving me very painful bathroom breaks. With this being my biggest issue it was very important that I try to start the hormone replacement therapy in the hopes that my body goes back to normal and no more dryness. However, Dr. Ciurea thinks that since my eyes are still dry, my bone density has decreased and I have severe vaginal dryness that it may all be caused by GVHD (for those of you who have forgotten GVHD or Graft Versus Host Disease is when my cells and my brothers cells are not getting along and causing a ruckus). He wanted me to start tacrolimus again (the immunosuppressant I was on after my stem cell transplant) and the prophylactics (like Bactrim to help support my immune system when it is lowered) but after talking to my Gynecologist he decided to let me try out the hormones first for two weeks and if my symptoms don't get better then (after emailing them my results and talking to them) I would start the tacro regimen. The tacro is supposed to lower my immune system to see if the symptoms alleviate and then slowly come off of it in the hopes that my cells and travis' cells get along better (it's kind of like putting them into time out). It would be much easier if the hormones take care of the problem (less pills to take :D) but we will have to see in two weeks what the outcome will be! I just hope that my symptoms go away and I don't have to wince every time I go to the bathroom. My eyes are still way too dry to consider contacts or even lasix so it's a good thing I'm used to wearing glasses :) It amazes me that two years after my last chemotherapy treatment that my body is still working to get itself back to normal. I hope that something works! 


****No more mentioning of lady parts.....it is safe to read again :)

I talked to a fertility doctor in the gynecologic oncology center in MD Anderson about what I should expect when I start looking at getting pregnant. She is new to MD Anderson and it amazed me that a lot of her job right now is informing not only patients but also doctors of the treatment options when it comes to patients getting chemotherapy and radiation. When I was going through my egg harvesting my doctors didn't know much at all about the process, how long it took and where to do it. I am pleased that they finally got a fertility doctor in the hospital and they are actually running a clinical trial for those that are about to go through a stem cell transplant and want to try and preserve ovarian function. I wish I could have been a part of it (it's just two shots of a hormone before and after the SCT) if only to give them more data for their study. Now, if we could get the insurance companies on board with funding egg harvesting and  other fertility treatments to cancer patients then we wouldn't have such a big problem! After talking to the fertility doctor I have a better idea about what I should do when I move back to texas and the steps I need to take to make babies happen :) I know before I said that the doctor normally puts two eggs or embryos in at once in the hopes that at least one takes to pregnancy but in my case if I actually got pregnant with twins it would put me in a higher risk pregnancy (I'm already going to be a high risk pregnancy so I don't need to make it even more riskier). So I'll have three separate chances :) I hope I don't have GVHD because that would delay any forward motions of having babies so please cross your fingers for me that it's all just mean ole menopause! 

I had such a wonderful trip and I miss my partner in crime Kell Bells! (I've got a fever! and the prescription I have is for more Kell Bell!) Get it? SNL? Christopher Walken? No? Maybe someone will get that reference. :(

I am ready for school to start and very excited for my final semester!!! whoo!! I am taking 13 credits, so my first full-time semester since I've been back! I feel ready and capable :) It'll be a busy 4 months but I'm excited for it! 

Oh and with all this going on my doctor wants me back in Houston in January so don't worry Houstonians, I'll be back in 5 months! This time with Cassidy in tow :D Can't wait to be back! 

Well farewell for now but I will be back to update y'all on how the hormones are working for me! wish me luck!

Aloha!

Tuesday, August 20, 2013

My 2 year check up

Hey Y'all! Greetings from Houston, Texas!

I have come up from Oahu to Houston for my 2 year check up! Can you believe it has been TWO YEARS?!?! holy crap! It feels like it was an enternity ago but also surprises me how fast time flies when you are not in the hospital. haha. I arrived in Houston last Thursday afternoon and have been staying with my great friend Kelly (who was my nurse) at her apartment.

On Friday I had an appointment with a Professor at Texas Women's University to talk about the application process for their Physical Therapy program and to take a tour of the campus. It made me very excited for my future and help me know what they are looking for when I apply. I have two classes I need to take for their pre-requisites in order to apply and I need to start studying for the GREs again. I am planning on moving back to Texas (with Cassidy and Zoe in tow) and plan on gaining my residency there since it cuts the tuition for PT school by HALF. That way I can settle down, gain some experience at another PT clinic and breathe before I say goodbye to my social life for three years. Very excited!

After Kelly got done with work we hopped in the car and drove down to Austin (3 hours away). We arrived around 11:30 pm to Tom and Angel's house. Teagan (their 8 year old daughter) was still awake as she was very excited for our arrival. I love this family so much! They are wonderful hosts and always make sure I have a good time in Austin. On Saturday they brought home Kolaches for us to eat while Teagan was at an audition for a commercial. This was my first experience with Kolaches and I was very impressed with them. They are like manapua but Polish (I think?). I love how every culture pretty much has the same food but with different ingredients/spices. All the same concept....a type of bread stuffed with deliciousness. :) After breafast/the audition Angel took me, Kelly and Teagan to go get our toes done! Now, the last time I got my toes done was the weekend before I was diagnosed. Yes, in 2011. So it was much needed! Thank you Angel for that treat! After that Tom took me, Kelly and Teagan (Angel had a bridal shower to attend) to a wine bar/restuarant called Cru. My mother would have LOVED this place. They have "flights" of wine that allow you to try 3 different wines. I chose a Chardonnay trio and they were all so different from each other. Very cool! Once lunch (it was more like Linner) was done we went to watch the bats fly out from Congress Ave bridge at sunset on a boat. This bridge was accidentally designed in such a way that accommodates bats perfectly for their protection while they give birth to their pups. About 750,000 pregnant bats fly in and stay during the summer to raise their pups. When we saw them the baby bats are old enough to fly out to hunt as well so we saw 1.5 million bats fly out to go hunt. It was very cool! I think I got peed on a little bit but other than that no harm done! haha. Such a cool experience.

After that (this was a very long, but fun, day) Kelly and I went over to her friend's house for his birthday party. All of her friends had come down for their friend's wedding so I got to meet them all again at the house party. I had so much fun! Kelly has amazing friends and I am so happy that I got to see them again. We stayed up until 5 am (omg.) and was very tired the next day but it was well worth it! Such a fun day!

The next day we had brunch with Tom, Angel and Teagan and then around 4 pm started to head back to Houston. It took longer coming back because there was traffic and by the time we got home (sometime after 8 pm) we quickly went for a run (1 1/2 miles...go me!) and then relaxed in the hot tub. A great way to end a great weekend!

Yesterday (Monday 8/19/13) I had my gynocology appointment and PAP smear. I've been having a hard time dealing with my menopausal symptoms (like hot flashes and dryness)...let's just say they had to use a pediatric sized instrument for me. They referred me to their new fertility doctor at MD Anderson whom I am scheduled to see on Friday (8/23) morning before I leave to go back to Hawaii. My gyno prescribed some hormones (patches, cream and pill) that won't put me at risk for a blood clot. I am hoping that these will work and help me with my symptoms and put my body back to (almost) normal! Please cross your fingers and wish me luck!

Today I have a full day of appointments:
10:30 am: Blood test
11:00 am: Bone density test
11:30 am: Survivorship meeting for 2 years
1:00 pm: Dr. Ciurea (my stem cell transplant doctor)
2:00 pm: pulmonary test (lung capacity; I'm aiming to beat my last score of 101!)

So far I am very impressed with MD Anderson as all my appointments are ON SCHEDULE today! It is 12:45 pm now and I'm waiting to see Dr. Ciurea. My bone density tests takes a few hours to come back but I am confident that it will come back normal. I will start taking a Vitamin D supplement to help out my immune system (my blood test shows that my immune system has increased!) and calcium absorption for my bones to keep them strong. I got some info packets about what to expect for year two post-transplant and I learned that I still have 1 more year to watch out for Graft-Versus-Host disease until I won't have to worry about it too much. After 3 years it is less likely for me to get GVHD but I always need to be aware of it as I can get it any time for the rest of my life! So far my blood numbers look good but i'll update that again after I see Dr. Ciurea. After my appointments I will get back together with Kelly and we will hang out until I go to dinner with my Aunt Dorothy.

Speaking of which, I saw her mother yesterday (Aunt Drexel) who is 101 years old! She fell a couple months ago and is having to walk with a walker for the first time ever...and she HATES it! It was so nice to see her and I made her DAY being there with her! She is getting her strength back and I know that as soon as she can she will throw that walker out the window! Such a sweet lady and I am excited to be closer to her once I move back to Texas. I told her she has to live for at least 2 more years so that we can get to know each other more and so I can come visit more than just once a year!

Jan and Janet will be coming back from their trip to Canada a couple days early so I am SO HAPPY that I will get to see them before I go! Kelly and I have made dinner plans with them on Wednesday at Brenners on the Bayou...one of my favorite places! I am so lucky to get to see them :)

Speaking of Wednesday, tomorrow morning I am due for my bone marrow aspiration :( yuck. I think this is number 7 or 8. I have lost track and it is hard for me to count the little dots on my hips in the mirror. I hope it comes back clear! I feel pretty positive about it :)

Well it is about time for me to see my doc. I will update later today or tomorrow once I get the results back for all of my tests! Thanks everyone for your support!

Monday, June 24, 2013

Summer time! And it's rainy?


Hello everyone!

 I am back from being sick and finally almost 100% better. I was brought down by a sinus infection (thanks Kelly! :) ) and with the help of anti biopics, steroids, tissue, my doctor and Cassidy, I have been able to get back on my feet and resume working. I had to take a couple days off from work but this past week went well for me and I'm almost done with all my congestion! Just a lingering but persistent cough that won't go away... This sickness definitely lasted longer than my first bout I went through a couple of months ago and I am going to be more careful. It is easy to get caught up with being healthy and I forgot that my immune system is still weak and can take longer to get better if I do get sick. Luckily I am fine and happy to be back to my normal routine.

 All week Cassidy has been going to work at 9:30 and since I don't work until 1:30 I have been taking Zoe to Kapiolani Park which is just down the road from where I drop cass off every morning. It is so beautiful there! With diamond head in the background and a huge field with beautiful banyon trees, it has been the perfect spot for zoe to run around and chase her ball. We usually hang outside for an hour before going back home for lunch :) I'm happy to be playing outside with her and running around! It is such a great way to start the day and it makes me feel accomplished knowing that while I'm at work Zoe is conked out for the afternoon :) love my baby girl!

As summer begins I have now finalized my appointments for my 2 year check up at MD Anderson this August. I am hoping to be there for a week (8/14-8/22) and be with Kelly, the Boyd Family and other various friends! I hope jan and Janet will be in town but they might be in Canada :( :( :( either way it will be great seeing everyone again! My dad told me while I was on Kauai that he and my nana were going to try and make it to Houston but my dad just told me he won't be able to go with me. Maybe nana can escort me to my appointments again like she did last year! Hopefully we won't make as much noise as we did last time...bringing Zoe into the Rotary House AND MD Anderson (yes, we had security chasing us down and trying to kick us out...but we had no where to put Zoe!!) this year Zoe is staying home with cass and staying OUT of the hospitals hehe. Oops! My flight has been made for the 14th of August and I am staying until the 22nd! So if you want to meet up while I'm there give me a call!

 It has been hard being away from my Houston family but I knew coming back to hawaii for a short time would be worth doing in the long run. Finishing up my degree with in-state tuition and not having to stretch it out for who knows how long because of the amount of classes Uni of Houston wouldn't transfer over could have potentially put me tens of thousands of dollars more in debt. Did i mention that the Houston heat was unbearably uncomfortable since my body wasnt able to handle the heat anymore? well that is no longer an issue now that I don't break out in hives everytime it gets a little warm out. I have to say that I will miss Hawaii's trade winds and I am grateful for them to help cool me off when my own body couldn't. Plus being back on Oahu and working at FSPT is giving me direct access to my first step into the BASI Pilates program. Working has helped me with my recovery and strengthening my posture/body. I feel like I have more control of myself again and I feel like my body is finally regulating itself normally again. Yes, my hot flashes are finally cooling off!

I can't believe it has been two years since my diagnosis because I feel like so much more time has passed from June 8th, 2011 to today! I have grown so much and discovered more about myself than I ever thought I would know. I feel more confident about my actions and being back on Oahu, being financially responsible for myself (with the help of Cassidy) and finishing up school has made me more of an adult. It has been tough but I am proud of where me and Cassidy are today and our plans for our future. I can't wait to be done with school, get started with Pilates and move back to Houston! It feels good to have plans for the future again; it was hard to let myself think too far ahead because I kept remembering that I used to have plans and they were changed due to my cancer. I was afraid to make future plans even for the next month because I knew nothing is ever set in stone. But I feel good looking into the next year and a half and looking forward to my next step in life. Moving (permanently) away from Oahu to Texas and setting down roots there in Houston and Austin. I know this detour through Oahu was not in the plans when we first moved away for my treatment but I have benefited from it in more ways than I can explain. And I couldn't have done it without Cassidy and Zoe by my side 100% of the time! I love what our little family has become and I'm so excited for our next step to make it bigger! Baby fever has set in...haha! I am guessing that is a good sign for my body! I am still waiting on the wedding plans (though still working on the bridesmaids dresses) until me and Cassidy can start saving some money. I think once we actually start saving then we will have a better idea of when the wedding will be. Since we are still stressing a lot on finances (even though Cassidy told me not to worry about them and leave it for him to stress about) I don't think we should be stressing about how to pay for a wedding until we can actually have plans to afford it. I know we will find a way to have the perfect evening for us all!
Thank you all for being patient!

We are going to see World War Z tonight (Brad Pitt and Zombies?? What could be better?!?) and I plan on furthering my relaxing weekend by healing and doing nothing! I hope everyone else has a relaxing weekend and I will write again soon!

Let's all pray this cough goes away ASAP! I'm using up all of the tissue at home and at work. :/ haha

Saturday, June 8, 2013

My 2 year cancerversary

I am pleased today knowing that I have come so far in my treatment since June 8th 2011; chemotherapy that got me into remission, moving 5,000 miles away from my home with my bf and mom to a new city, meeting all the wonderful people who surrounded me during my stay in Texas and those who I consider like family now (Jan, Janet, Kelly, Boyd Family, etc.), harvesting my eggs and fertilizing them (I got 3!), surviving Bulsofan chemotherapy and its side effects and mouth sores, a stem cell transplant thanks to my donor, Travis (my brother!), having amazing nurses including my very best friend Kelly to help me through my mouth sores, constipation, doubts and worries, pain and boredom, finding Zoe who has been by my side to help me with my recovery, to getting engaged last year on this day to the most amazing man who has stayed by my side and almost killed himself with worry every step of the way through my treatment but never showed it on his face; who brought me to the ER two years ago today because I was sick; who stayed in the hospital for about a month as I went through my frist round of chemotherapy; who worked tirelessly so that I had a nice place to stay near the hospital and would come running if I ever called; who loved and cared for me 110% everyday no matter how hard it got and for making me laugh and smile through the bad days, telling me that its going to be fine and that we will get through this, and, finally, staying sick and infection free for almost 2 years! Unfortunately within getting sick the first time (about 2 or 3 weeks ago) I got sick again (possibly from having too much fun when Kelly came to visit) and am stopping to take breaks from writing this to cough. But never worry! I have been to my doctor here and he has given me anti-biotics to help with my possible sinus infection and I have been at home resting while Cassidy keeps my glass filled with POG (passion orange guava juice). I took off of work yesterday because I had a low fever of 100.58 degrees but today I have had only a temp of 99 degrees. Hopefully I will be all better by Monday to go back to work!

My boss is in California doing a Pilates conference and getting more information about the BASI Pilates Teaching certification that she will hold at her clinic on Oahu and which I am planning on taking this fall. She said that they have some scholarships available and she will get some more information about them so that I won't have to pay for the certification classes. I am so excited about my first step into the BASI Pilates world and the amazing doors it will open for me to further my learning in Pilates. Thank you Linda for helping me find my new path and for getting my foot in the door with BASI Pilates! Im sorry I got sick and had to miss work while you were gone :(

I am so fortunate to have continued support throughout everything I have been through. I don't know what I would have done without you all praying for me, thinking of me and sending me positive vibes to encourage me to always fight! Thank you for sticking with me and putting up with my flaky blogs and for continuing to read them! As I look back to 2 years ago I never would have thought what amazing people I would meet on my way to recovery and how, if given the chance to do it all again, I would. I look forward to this next year and all that encompasses it (my first Pilates certification, graduating with my BS in Kinesiology and Rehab Science, moving back to Texas) and never knowing what the future holds for me but I will continue to go forward with my head held high (and good posture) to take on whatever new challenges come my way.

Sunday, June 2, 2013

Sun kissed and tired legs

Hello!

So I know on my last post I said I would be writing more often but let me just explain the craziness of the month of May.

I have been living in Kailua on the island of Oahu with Cassidy and 3 other roommates. It is a pretty large house so even with 5 people under 1 roof it wasn't all that crowded. One of my roommates is my old roommate's father who is recently divorced and needed help finding a place since he had just moved here from Maine. Cass found this house back in October and we moved in and found 2 other roommates to help make the rent cheaper since the house cost $3,300 to rent (yes, I know...extremely expensive!). It has been lovely living in Kailua because it is away from the city and only a 10 minute walk away from the beach! Zoe and I have had many good walks and runs to the beach and it has been a big help to getting my legs stronger again and getting active. In this household me and Cass have been being the ones that send the rent checks to our landlord and sending in the checks for the bills. Ever since October it has been a stressful event every 1st of the month to collect rent and utilities money; and every month someone always paid us late. My ex-roommate's dad is 50 years old and always gave rent money and utilities money late, drinks way too much alcohol and has a negative energy about him. He is a very bitter person and holds grudges against anyone even over small things. He was pretty much the reason why me and Cassidy decided to move out of this house. Zoe has had accidents in the house and we have been doing much better lately with her being potty trained. However, Zoe doesn't like this roommate very well and one night she pooped in his room. This roommate of mine FLIPPED OUT and was acting like a child over something so small (Zoe is a 10 lb dog so her poops aren't very big at all). We are also tired of taking care of everything in the house and feeling like we are coming up short for bills every month. Also, we lived about 30 minutes away from work and have been driving around 50 miles a day so we have been spending about $200 a month on gas. This crazy outburst pretty (combined with other stupid things that I don't have the time or energy to explain it all) was the last straw for us so we found a replacement for our room and moved out of the house in Kailua and found a small studio apartment right in town. It will definitely save us some money and with all the drama behind us we can live comfortably and quietly in our new spot :)

Unfortunately it took over a week for Oceanic Time Warner Cable to come by and set up our internet so I couldn't update my blog until then!

And then, of course, I have been so busy hanging out with my best friend Kelly Lang! For all who don't know Kelly she was my nurse at MD Anderson and is my age. Right from the start we felt like we had known each other for years and she not only helped me through my chemotherapy she came by on her days off and hung out with me. After I moved back to Oahu we made plans for her to come out to visit this summer. Since May 24th we have been having tons of fun with her showing her the island of Oahu! It has been so much fun and I am going to miss her so so much when she leaves tomorrow :( :( We have been hiking 4 times and going to the beach almost every day! Don't worry, I have been wearing 85 SPF and hanging out under the umbrella :) We hiked the pillboxes in Kailua that over looks Lanikai (beautiful view!), the Stairway to Heaven (1.4 miles roundtrip and 2,800 feet above sea level with an average incline of greater than 45 degrees!!), Koko Head trail (1,048 stairs in .8 miles and 1,200 feet elevation) and then ended with the Hanakapiai trail on the northshore of Kauai (4 miles up and down the Napali coast to a huge waterfall and then 4 miles back and a total of 25,000 steps taken!). I think it is safe to say that I am good for hiking for a little while and ready to rest my legs! I had a blast and I know Kelly did too. She saw the most beautiful parts of Kauai and Oahu and I can't wait for her to come back in December (I hope!) so that I can show her more of Kauai (2 days is not enough!) and also take her to all the best places to eat here (we didn't have time to go to my favorite places :( ). I love this girl so much and I am so thankful to have her here with me!

Right before we decided to move I got sick for the first time since my transplant. I was at work and had a headache and wasn't feeling very well so I went home early and as soon as I got into the car I got a fever. I got home and my temp was 102.5 degrees. I wasn't throwing up or coughing so I just took some tylenol and went to sleep. Cassidy was freaking out (my poor baby) and I told him we could go to the ER if my fever went above 103 degrees of didn't break by the morning. Luckily it broke and didn't go above 102.5 degrees. For the next couple of days I had a headache but other than that I was fine :) I got lucky! My first sickness since the transplant (1 1/2 years!) and it didn't get me down! I have been feeling great since then and have had no problems since :)

I am going to mess around with my blog and try to figure out how to put pictures on here. I would love to post the pictures we took of all of our hiking adventures.

I hope you all had a wonderful month of May and wasn't as crazy as mine! We finally have wifi at my apartment and won't be showing the island off to anyone soon so I will have a lot more time on my hands to keep up with my blog. Thank you everyone for your continuing support! I know I am not the best at keeping up with my updates but I promise to try harder to keep up. I don't know what I would do without all of your positive energy and constant love and support. Thank you Thank you! Aloha until next time!

Sunday, May 12, 2013

Our story continues...

First off, I would like to say Happy Mother's Day to all the wonderful and amazing mother's out there! Like my own momma who took care of me for 5 months as my caregiver, my Nana, my Bucha, my Grandma Mary (I am so lucky to have three wonderful grandmothers in my life!) and to all the other mothers in my life like my sister Chelsea. Of course, if your baby happens to be a furry one (like mine!) then you are a mother too! We have all taken care of our children and the love they give back to us is the best reward we can ask for. I cannot wait to be a mom with children of my own one day! I love you all and thank you for all of your support and love that you send to me everyday!

Now...the road trip!

July 2012
So on the second week of July we packed everything into a storage unit and our car and said good-bye to our Texas family. It was sad to say good-bye but I knew that we would be back again soon! The storage unit was packed completely full and so was the car! So we got ourselves comfy and Zoe set up to hang out in-between us and set out towards Fort Worth where we were going to stay the night at a very high-end Super 8 motel :P. I had packed snacks, travel dog food for Zoe and drinks for us to have while on the road along with easy access to our toothbrushes :). It took about 4 hours or so to get through Dallas to Fort Worth and we stopped around 11 pm that night to rest up for the long haul the next morning.

Mileage so far: 264 miles.
Hours driving: 4.5 hours

The next morning we woke up and set out on the road towards Keystone, Colorado where we were planning on meeting with Lori's parents to do a small memorial service with her ashes. We had to drive 13 hours straight (with a few pit stops on the way for lunch, Zoe potty breaks and to stretch our legs) and made it safely to Denver, Colorado...once again at a very nice high-end Super 8 motel. The next day we planned to hang out with our friend Dan (who Cassidy and I know from our old jobs at The Counter) who is living in Boulder, CO and attending the University of Colorado for his architecture degree. Since we hadn't made solid plans with Lori's parents yet on where to meet and what time we decided to relax and spend the day with our friend. Boulder is a beautiful city that is very dog friendly! I absolutely love it there! The weather was perfect as well! Not hot at all! Zoe go to run around the park at the University and we got lunch together with Dan. It was nice to spread out and play on the lawn and have a relaxing evening. We made plans with Lori's parents to meet them in Keystone the next day so Dan let us stay the night in his dorm room. That was so nice of him! It was so nice seeing him on our way across the country.

Mileage so far: 1050 miles
Hours driving: 18 hours

After saying good-bye to Dan Cass, Zoe and I packed up into the car and set out for Keystone, CO. I haven't been to Keystone before so I was very excited to see the drive through the mountains. It was about another 100 miles away and would take about 2 hours to get there. We met up with Lori's mom, dad, one of her brothers and his girlfriend for lunch at the pizza place she used to work at. It was located in the little ski town just under the mountain where the gondola takes you up. The manager working there remembered Lori and gave us her employee discount when he heard why we were all there. Afterwards we went to one of her favorite camping sites and found a couple spots in the stream to spread her ashes. Her mom gave me some of Lori's ashes for me to spread on my own. I have yet to find the perfect spot for her on Oahu. Around 4 pm we decided it was time to head out towards our next destination; Salt Lake City, Utah.

Mileage so far: 1200 miles
Hours driving: 20.5 hours

From Keystone to Utah it would take us about 10 hours to drive there, and another 460 miles. I made plans to go to our family friend Terry and Steve's house and stay with them for a couple of days. Terry had been hoping and trying to make it out to Houston while I was there but was never able to make it. So I decided to go a little out of our way (since we were already out of our way in Colorado) so see some great friends! We are so thankful for Terry and Steve for putting us up and putting up with us :P Zoe had a BLAST with their two big dogs and even though she was only 8 months old she was fearless against his 8 month old pit bull mix. They were quite funny. I also met their horses and got to ride one :) I met Terry's daughter Kaira and saw the Dark Knight with her, her boyfriend and Cassidy. I also met Steve's kids as well as some of their friends on the last night we were there. For 4 days we had a wonderful time to rest, chat and catch up with the Nani family and friends. I am thankful for everything that they did for us and I hope to return the favor one day for them! Thank you all again for the wonderful time we had with your family Terry!

Mileage so far: 1660
Hours driving: 30.5 hours

As we headed out towards our final destination, Costa Mesa, California we decided to do it in one stretch so that we would get there by dinner at my friend Lilja's house and we made it there on August 1st. It took about a week for us to make it from Houston to California. On this last stretch Cassidy drove the entire stretch as I read him The Lovely Bones (it was the only book I had with me). Lets just say that I was tired of talking by the time I finished that book (which was when we got to Costa Mesa). Cassidy had his plane tickets to go back home in 2 days and Zoe and I were going to stay at Lilja's house for a couple of months until I had to go back to Houston for my 1 year check up. Her parents were kind enough to let me stay with Zoe and I am so thankful for their hospitality! We had such a good time there! I had never really explored Southern California before so I was very excited to be there. Lilja helped me get a job at the new movie theatre that just opened up so that way I could work and support myself while in California. I learned how to make gourmet coffee, project digital movies and met some pretty great people at my job. I am very thankful for my experience there and the people that I met; it really made the month and a half I was there that much better. The trip from Utah to Cali took about 11 hours and another 700 miles for a GRAND TOTAL OF:

Grand Total Mileage: 2560 miles
Grand Total Hours Driven: 41.5 hours

Cassidy flew home to Oahu to work at the Apple store in Waikiki and stayed at a friends place while I was in California. Zoe and I flew back to Houston in the middle of September for my one-year check up with my stem cell doctor at MD Anderson. I stayed with my friend Chelsea in her great apartment that is located right across the street from this great little park that Zoe got to run around in. I planned to be in Houston for 2 weeks so that I would get to see all of my family and friends. The first week I stayed with Chelsea and also spent a weekend in Austin with the Boyd family. The second week my Nana came to town and we stayed in the hotel that is connected to MD Anderson; it made it much more convenient to get to all of my appointments I had that week. It was so wonderful to see Nana, Chelsea, Tom and Angel, Kelly and Jan and Janet while I was in Houston. It was such a great trip it was very hard to get on a plane and go back to Hawaii. I miss everyone so much! But I knew we wouldn't be gone forever and would see everyone again soon!

I moved back to Oahu on October 1st and for 3 stressful weeks had to work to get Zoe released from Quarantine. Even though we had what the state had required for her to NOT be in quarantine they had kept her in JAIL. :( My poor baby was in a concrete floor kennel outside and it was so hot and I could only visit her for a couple of hours 4 days a week. It really hit me hard not having her with me everywhere I went and I got very anxious and depressed without her. My therapist was able to help me get her released since she is my therapy dog and instead of being there for 4 months she was only there for 3 weeks. I missed my little snuggle-puss and we were so very happy to have her home with us!

The physical therapy clinic I worked at before I was diagnosed gave me my old job back which has been a great place for me to recover myself. Being with patients and helping them get rid of their pain and make them smile has helped me a lot with my own rehab. I enjoyed being at work because it made me work on my posture and get my muscles stronger again. Also being busy and having a different purpose other than surviving has been a great change. I enjoy going to work every day and I don't know what I would have done if I didn't have Linda (my boss) to help me get through this next step in my life. I was able to get back into the University of Hawaii at Manoa and was able to register for 3 classes (two online) for the Spring 2013 semester. I was nervous but also excited to get my brain and body working again.

Okay I think I will leave it off here. From July to September I was living it up in California and moving from Houston to Oahu to finish what I had started at UH. From October to January I worked, celebrated Christmas and New Years at home on Kauai with my family and prepared to start my first semester back in college. In january I started school again with a computer class to attend 3x/week and two online courses that wouldn't require that much work to do. I also applied and was granted disability to help pay for the bills since I am still unable to work full-time without exhausting myself completely. It has been a busy 5 months but I managed to get all A's in my three classes and I am very proud of myself for getting through my first semester! I have signed up for 3 classes for the Fall 2013 semester and then I will only have 2 more to do to finish my degree in the Spring semester of 2014! Mark your calendars ya'll! Cause it looks like I'll be a graduate of Kinesiology and Rehabilitation Science from the University of Hawaii at Manoa in Spring 2014! So excited!

Thank you all for your support and I will now have lots of time to keep up with my blog entries. I am hoping to remember to write one every week! I hope you have a wonderful weekend and have a great Mother's Day!

Wednesday, April 24, 2013

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     

Sunday, April 21, 2013

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!

Tuesday, April 16, 2013

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!

Monday, April 16, 2012

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

Friday, March 30, 2012

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

Friday, December 30, 2011

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