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Saturday, October 25, 2014

Back to old habits...but asked to make some big decisions

I'll start off by saying that I had a great scan last week...significant partial response is the official report!

I actually had a little bit of a scare when I first sat down with my doctor...the original "wet read" of the scan (the wet read is what they look at right after I have the scan, before the radiologist takes a deep dive into it) said that there was some growth in my bones. So when he said the word "growth", I just sighed and said Ok. I've been through soooo many ups and downs with this disease in the last 5 years that I wasn't even shocked. I was a little surprised to hear growth because I had been feeling much better, the night sweats and itching stopped (although I do still get scared when I have an itch or sweat at night) and I've gained weight and energy. Plus, I usually respond to a new treatment in the 1st round. But I have learned to manage my expectations and proceed cautiously with each step, so I just asked "what's next?"

Thankfully then, my nurse practitioner came in with the actual report that stated what they thought was growth in my bones was in fact residue from the last treatment...apparently if you have a scan close to a treatment, this drug can "light up" on the scan too...similar to how cancer lights up. Ugh. I've never had a scare before, but I'll take it if the actual report says that the disease decreased in all areas and things look good!

Of course, then the other shoe dropped.

My doctor brought up that he wanted me to think about an allo transplant again. I wasn't totally surprised that he brought it up because they have been trying to get my old records from my previous doctor 4 years ago, along with re-testing my brother to see what percentage of a match he is (when my brother Garrett was originally tested in 2011, he wasn't a complete match. But now, there is new evidence that a related donor who is a partial match could still have good results for an allogenic transplant...it's called a "haplo transplant"). However, I still wasn't ready to have this discussion.

Me being me told my doctor that I just wanted to stick my head in the sand and not think about an allo. I wanted to continue doing these trials and new medications until I hit the miracle one that brought me to a complete remission. I know several patients that have done that and are living with remissions without doing an allo...and I want to be like them! He said that's certainly possible but technically in the medical world (despite those lucky patients) there is no known cure for the disease except for an auto or allo transplant.

It's just sooo hard. I've had a really crappy year and especially crappy summer in terms of my health, and I finally feel better and they want me to make this decision now? I find that if I feel better, I easily fall back into my old habits...living my life and forgetting about this disease. Sometimes that's good (focusing on work, hanging out with friends, starting to exercise again), sometimes it's bad (stepping on the scale everyday and worried about how quickly I'm gaining weight--I am SUCH a girl!) but overall I feel great! So the idea that someone wants me to make a life-changing decision such as to allo or not to allo is downright horrible.

Part of the reason that my doc brings this up now is that there is a new transplant team at Columbia that he is recommending. Back in 2011 when we first talked about transplant, he said the best place to go is to the Seattle Cancer Center.  I couldn't imagine leaving Ross and my life in NYC to stay in Seattle for months for a transplant, but once I visited I did feel a little better about the process...there's something about the west coast vibe that is nice and peaceful. So you would think that I would be excited about an NYC option, but here's the thing: I have MAJOR PTSD from my auto transplant in 2010. I was in the hospital for 2 weeks and almost had a nervous breakdown. Every time I think about staying in a hospital overnight I feel like I want to throw up. I can turn into such a b***h when I'm at a hospital, because the instant I step foot in there, I want to leave.

Seattle actually has an out patient program...which is part of the reason that it made the process a little less scary. Columbia's program is in patient. I wish this wasn't a big deal for me, but it is! I have a really hard time wrapping my head around another long stay in the hospital (possibly up to 4 weeks!)...especially if it doesn't work.

And that's the other issue...allos have like a 30% chance of cure and a 30% chance of death and a 40% chance of relapse. I already had a damn auto and that didn't work...so why should I believe an allo will?? Those odds don't seem so great and unfortunately I've seen a lot of people pass away recently from complications of the allo. So that doesn't ease my fears. This sucks, it reallyyyyyy sucks. Can I please stick my head in the sand and not think about this?

Thankfully my doctor said the ball is in my court...unlike previous doctors who make me sick...he's not pressuring me either way, ultimately he said the decision is mine. So the next step (besides getting to complete remission with Bendamustine and Brentuximab) is meeting with the Columbia transplant team to find out about the program and what they would recommend for me.

And then, it's up to me. Ugh. Anyone else out there want to make this decision for me? There are some decisions in life you never feel quite "adult" enough to make, and this is definitely one of them.

2 comments:

  1. Morgan --

    Still sending hope and prayers your way, but also want to point you to some recent new treatment breakthroughs you should discuss with your doctors. Exciting results for patients like you with relapsed/refractory HL. Study results were just presented at the annual American Society of Hematologists' conference -- here's a link to a summary of the studies: http://bit.ly/1vZrBky Please check this out before you make your decision about the next Stem Cell Transplant. And also, now that I'm working at Leukemia & Lymphoma Society, I may be able to help you in other ways. Feel free to reach out to me at nancy.hallberg@lls.org

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  2. Thank you Nancy! My doctor (Owen O'Connor) was at ASH and he is getting some of the new drugs presented at the conference in the coming months. It is definitely exciting!

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