So I have not updated my blog in quite a long time, in part because my health has been better and in part because I don't like coming back to this page and remembering the tough times that I went through. But it was this page and everyones words of encouragement that got me through everything. And unfortunately I am back on here because I am need of that support once again.
Over the last few months I have been undergoing chemotherapy again here in Hawaii (Navelbine and Gemzar). While the drugs are much weaker than any of the others in the past, my body has been having problems recovering from each treatment. My white and red blood counts and my plattlete counts have all been affected to the point that I ended up in the ER twice and have had to have blood and plattlete transfusions. Because of this Dr. Liu decided to stop my treatment early and go ahead and give me a PET/CT scan to see if the drugs have been working on killing the cancer cells. Following the scans I was told that the cancer was almost gone except for one spot remaining on my left 4th rib. After speaking with Dr. Reeder at the Mayo Clinic, Dr. Liu decided to restart the chemotherapy but this time only giving me one drug (Navelbine). I have undergone one treatment of this so far and have another three to go before they go ahead and schedule another PET/CT. Hopefully after this round of treatment the cancer will be gone and I will be considered in remission.
While this is something that I have been working towards it also means that I will have to undergo another bone marrow transplant which I am not looking forward to to say the least. The first transplant was hard enough on my body but to go through another one and this time have to infuse the bone marrow of a stranger will make it all that much harder. The stay in the hospital will be much longer and because of the chance of graft v. host disease (my body rejects the donor marrow) I will be under much closer watch by my doctors to make sure that I do not develop any major side effects in the first three months following the transplant. But what worries me the most are the potential for long term side effects that could include liver and lung disease and skin sensitivity. So while they are possibly curing me of Hodgkins Disease, I may now have another major disease to deal with not to mention the possibility of another type of cancer developing due to all of the chemicals that they have pumped into my body.
So now I have to make the tough decision of undergoing the second bone marrow transplant or taking the chance that the cancer will stay in remission after this last dose of chemotherapy. While I know my doctors believe that the transplant is the best option I am not quite sure how much more of this I can take. I already have a ton of side effects that I deal with daily and then to add on a heap more I am not sure I want to do that. I am hoping that with a complete change in diet and way of life I can maybe keep the cancer at bay without having more chemicals pumped into me. In the end I will have to talk it over with my family and doctors and come to the best conclusion but as I write this I am fearing the transplant and everything that comes along with it. I would rather live out a shortened life and enjoy myself than live a longer one that includes endless limitations and health issues...
14 comments:
I love you so much! You are my inspiration, my light. I am so proud of you and all you have endured these last few years. I know we will come to the right decision as a family, but ultimately I will support whatever you decide is best for you. Stay strong though baby bro, I need you! I am here always. Love, mia.
Hi Alika. I'm Malia's mother-in-law. You are brave and strong. You DO have a family that loves you and is there for you. I believe in divine healing and have had you on my prayer list since I heard this evil disease was attacking you again. I am praying now that you will come to the best decision for you as far as whether or not to have the bone marrow transplant. I am also praying that the disease will be gone permanently and that all side effects from past treatment will cease.
Thinking of you and sending encouraging energy your direction during struggling times~ hugs heather
Alika! Glad to see you back blogging - however I wish it was better news.
I am officially on the Bone Marrow Donor registry (www.marrow.org (formerly NMDP)) because of you! My friend Standish actually created the computer coding for the National Registry located in Minn.
I wish you good vibes so that you can remain in HAWAII!
Dear Alika--I am sorry to hear you are in such a tough place. You are doing the right thing thoughtfully considering what works best for you. We miss and love you very much. Let us know if there is anything we can do for additional support. xo - The Harsas
Alika,
I think of you often. You have grown into such a fine young man, full of spirit, courage, and heart. Whatever decision you make, those who are close to and love you will understand and support that choice. Continue to live every day fully, and maintain your incredible optimism. You are an inspiration for us all.
Love, Mrs.S.
"Walk to the edge. Listen Hard. Practice wellness. Play with abandon.Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is." You must live with Intention.
Love you,
Sid
Sending good vibes, love and light your way, kiddo.
The McGiverns
Your Dad alerted me to your new blog post and I have only one question; How have you gained so much wisdom at such an early age? I cannot begin to count the number of times I have described your arduous task to friends as an example to follow. From here it looks like you have achieved something we all hope for, the moment of self knowledge, of knowing who we are. Please know how important your words are to all of us. And, should you have to go the route of another marrow transplant, perhaps the "stranger" will be a gentle, friendly soul making you well, and even better. I think of you, your Dad, Mom and Malia daily. Much aloha to you Alika.
We believe in you, and your nephews miss you.
Dear Alika, I am a friend of your dad's. I'm 29, and when I was 26 I was diagnosed with leukemia. When I found out I would have to go through a stem cell transplant I too wondered the exact same thing as you. Is it worth it? My oncologist told me to "trust life" and the simplicity of his statement gave me a lot of hope. I decided to go through with it, and just yesterday I found out the name of my anonymous donor - Roland - from Rottenberg Germany! Some man - a compassionate stranger on the other side of the world gave his blood to save me. It feels good to know that random acts of kindness can be so profound. Another thing my doctor said to me was "as you get older, doors close, you get married, you follow a career, etc. and that closes out other options in your life. For you, the doors are just closing a little faster." This of course made me cry at the time, but only because he forgot to mention that a door never closes without another one opening. If I could offer you one piece of advice, it would be this: no matter what decision you make, do your best to resist making it out of fear. Trust Life. I wish you all the best in life, happiness, health and love, Ibby Caputo ibby.caputo@gmail.com
Keep up the fight Alika. We're pulling for you and think about you often. Hope to see you again soon.
Len & Rayne
Wow - and we are right there with you. I know for a fact that diet, exercise and meditation/prayer WORKS to cure physical problems, you are going to tackle this (again:)). We love you man and will have to check you out in Arizona when/if you are there!
Hey Dude:
Today I am especially emotional - thinking of you - praying and asking God why? Want to understand why - someone came up to me asking how you are and asking why this monster picks on the nicest people and why we can't find cures, why it takes so long. You haven't even been gone a week and we miss you, we look at the pictures of our lunch together, we feel a void with you not being by our side. Just know ok, we are here for you always. If you need help, we are there. Your friendship is everything to us... WE LOVE YOU! The gang...
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