Sunday, March 7, 2010

long, overdue update

My sincerest apologies for not posting since January. A lot has happened since then, which I will explain, but I think I hit a wall where it just became too much and too long to deal with all that was being thrown at me (and us). As I explained in my last post, this process just always continues. Everyday brings a new issue, new information, progress, failure, joy and sadness. It is difficult to explain, and I never would have understood it myself a couple of years ago, but it is physically and emotionally exhausting and sometimes feels like it will never end. To coin a phrase from a Broadway show years ago (I am really showing my age here), "Stop The World, I Want To Get Off" is sometimes how I have felt over the past few months. The news, the process, the steps to get from A to B, sometimes feel overwhelming and so I think I just shut down a bit and grew tired of talking about it all of the time, which is why I stopped writing and took a break.

All that being said, this blog has been an important part of this journey for Ha and me, and I cannot express how much I appreciate all of you who take the time to read it and the support you have all provided. It is also an important piece that I feel privileged to pass on to Mai and Tal. Regardless of what happens, whether I live 1 year or 50 years, to have a journal of their Dad to read from years ago, I hope will be something they can find meaning in.

So... my medical update. In January, as I was approaching my 100 day marker, I was not feeling well. Lots of stomach pain, fatigue etc. It persisted for some time and coupled with the clotting issues I was having, my doctors decided it might be best to get a ct-scan to see if my disease might be returning. What they discovered is that all of the disease that I had prior to my transplant was gone (good), however, there was new growth that was already occurring and it was in multiple locations (definitely bad). I believe my doctors were as surprised as I was and they were quite candid with me, expressing that this was not the result they were expecting nor hoping for. It appears that the radiation and chemo prior to the transplant did it's job and eliminated what I had leading into the transplant, but my disease relapsed very quickly and did not allow enough time for my new immune system to strengthen and fight any new disease. The concept of the transplant is to eliminate and then build a new immune system that will fight back against any new growth, but my disease returned in less than 90 days. My immune system was about as strong as a infant's, and not developed enough to do its job.

So, the plan they have developed is to put me back on more chemo cycles to reduce the disease, essentially buy some time, and allow my new immune system more time to strengthen. They are theorizing that if they can keep me stable for many months, that eventually my new system will gain enough strength to begin doing what it is supposed to be doing...fighting the disease. As of today, I have undergone 2 rounds of EPOCH chemo, the same chemo I had prior to the transplant and will begin my third cycle on Thursday 3/11. If EPOCH is found to be ineffective, there are two other "cocktails" they would alternatively try. So far, the results have been positive. They ran a ct-scan last week and it appears that the largest lymph nodes have reduced in size, the smaller (but still enlarged) nodes are stable, and there is no new growth. The side effects have been considerably worse this time around though. They had explained that because my immune system was not as strong as prior to my transplant, I might not tolerate chemo as well, and that proved to be the understatement of the year. I now realize how lucky I was previously, experiencing minimal side effects throughout chemo and the transplant itself. The past few weeks have been filled with fevers, significant pain, blood transfusions, multiple day hospital stays to stabilize my blood counts and eliminate fevers and just general misery.

It has been hard on me, but equally hard on Ha, Mai & Tal. Ha has had way too much thrown on her plate, but continues to keep her strength and kindness, caring for me, Mai and Tal, managing our household, paying bills and trying to keep a sense of normalcy in our home. Mai and Tal are getting old enough to understand more of what is going on, and at times it is heartbreaking. Having them pull my legs as they say they do not want me to go back to the hospital, is sometimes almost too much to bear. Mai now understands that if my fever spikes above a certain number, I am required to check back in to MGH, so she is constantly offering to bring me drinks and food to "help me get better" so I can stay home. Tal is her constant side-kick, mimicking Mai's every move and his favorite activity is to bring me Cheerios in bed when I am napping (although he tends to eat most of them himself). They are so innocent and sweet and none of them (Ha included) deserve any of this.

I am doing ok but realizing the battle is getting more complex and more difficult with each new day. This has been extremely difficult since day one, but as it continues to progress, it also becomes more frightening. When you feel sick, you are constantly reminded of your plight, which is a whole other mental challenge to fight. I am a "glass half full" kind of guy and always have been, so as long as we are seeing progress, I remain hopeful. But, I do recognize the difference of my current situation as compared to 6 months ago. I have now relapsed twice, my disease is a huge question mark as far as treatment and success rates, and the disease is no longer localized. On the other side, I am working with about the most capable team of doctors you could find on this planet, we are seeing some progress, and I am one tough, determined guy who has three beautiful treasures at home that I would do absolutely anything for. So the battle continues, each day is a gift, and we will continue to gain strength from the love and support we receive from all of you.

Ron

12 comments:

  1. Ron,

    We are heartbroken, speechless, and amazed by your courage. Thank you for sharing your story so that we can feel connected to you even though we can't see you. It is so amazing to us that Ha found the time to invite us to a concert with all that you have going on at home. You and Ha are inspirational.

    All our best,
    Tricia and Don

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  2. Ron, Your an amazing person. Please get strong, I want to see you sometime soon! I love this blog, I assume it hard to write but it is great to read! I am praying!

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  3. Hey Ron,
    Thanks for the update. One thing I can attest to: In the 30+ years I've known you, you have in fact been a "glass half full guy". No doubt your positive attitude has and will continue to serve you well. I have so much respect for you. Your an inspiration to everyone.

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  4. Ron, keep fighting for the treasures you mentioned, and keep the faith in your journey, no matter how small the amount of faith, it will serve you well in every aspect of this fight. We think about you a lot and admire your perseverance, and I think you might have thousands in Trinidad praying for you! On a side note, Cher and I took Leo for a three mile walk yesterday morning before I left of Ian's birthday party. For the first mile Leo was like a young pup, tail and head high, soaking in all the new surroundings. By mile two his tail was sinking and his nose was practically resting on the ground. By mile three it was evident that I might have to carry him for the rest of the way, and his tongue was dragging in the dirt! If he can make a three mile walk you can make the journey of a lifetime... keep fighting it and persevere. Billy, Cher, Kijana, Dylan, Ethan and Leo

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  5. Ronald-

    Frank said it best- you are a "cup half full guy". Always have been. Keep fighting my friend. You are an inspiration to so many. Be strong.

    Michael Sherman

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  6. Ron,

    Great blog, my friend....You are showing true courage. You are a wonderful friend, husband and father.

    Keep fighting as everyone has said. You have so much to live for

    You will be in my prayers,

    Steve

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  7. so much strength and grace, i am beyond awed...

    ron, ha, mai and tal, our thoughts and prayers are with you,

    much love,
    mai, paco, and javi

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  8. I was counting your days to 100 with baited breath and was devastated to hear the news. Now we'll begin a new count 'til your immune system fight back. You remain always in our thoughts.

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  9. I have been keeping you and your family in my heart and prayers. Stay strong!
    Roberta

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  10. Sarah's playing Beethoven's Moonlight Sonata as I type this. Such a haunting, beautiful piece - You'll have to imagine the piano soundtrack.
    I read your blog and notes to Matt and wish to surround you with warmth and comfort. Then I remember you have lots of that. I guess I just want to send you more... Laura

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  11. Ron, Ha, Mai, and Tal ---

    Just read your latest. Well written, sad, hard to fathom. Mollie wanted me to read it to her. As only a 10 year old can - "That's not fair."

    David

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  12. Ron,
    Your journey is such a challenge and your sharing of it via this blog is such an amazing gift to everyone. Even though I don't know you directly (I've worked with Ha), I am quite moved by your words. What you are writing and sharing is so important and I thank you. You and your entire family are treasures. many blessings, Anne

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