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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.

Saturday, October 4, 2014

Dreaming about Cancer...or actually Hair

Last night I woke up suddenly after a very strange dream that seemed to be loosely based around the Hunger Games. For some reason I was in a line of young people who were selected to answer a question correctly or they would be stabbed (so violent, I know!) A guy behind me tried to give me the right answer as my turn arrived, but then he said, "just tell them you have cancer and you're on blood thinners and if you get stabbed, you'll bleed out!" "Oh yeah, that's right!" I said. Disturbed, I finally woke myself up!

And then I thought about the fact that, even in my dreams, I have cancer. So depressing.

Cancer doesn't always come up in my dreams, but when it does, it usually arrives in the form of my hair...because, let's be real, it always has and always will be about the hair! LOL. Shortly after I was diagnosed and all I cared about was keeping my hair, I asked a former co-worker who had just recovered from Non-Hodgkin's Lymphoma and was rocking a pixie, if she had short hair in her dreams. She laughed and said she never thought about it, but realized that she did. She didn't seem to have the hair issues that I had...she walked around our office bald before her hair started growing in, but it made me realize that even in my dreams, the "me" that I knew would be different.

From the moment I started loosing my hair, my self image became extremely fractured. I've said it before, and I'll say it again. Hair is a part of my identity (as it for many women) and loosing it, really brought the disease to life. Plus, it was the first thing someone would notice when they saw me. And I couldn't even escape in my dreams.

I started to dream about having cancer, and my dreams my hair followed my cancer journey. The day I actually lost all of my hair and pulled off the last bits of fuzz stuck to my head is seared in my memory. Yet, thankfully I seem to have blocked out every bald day after that, as I never dreamt about myself bald. I was used to seeing myself in a scarf from wrapping my hair and sleeping in a scarf in my pre-cancer days, so I would immediately switch from scarf to wig before leaving the house, never looking at my head.

And as my hair grew I started wearing hair pieces and extensions until I felt comfortable wearing my own, new, very curly hair. And that's how I appeared in my dreams as well. Now when I have dreams, I have a head full of curls...even if I'm about the get stabbed, lol.  It's so funny, I know that hair is important to me in real life, but to have it show up so vividly in my dreams makes me chuckle a bit.

As for a cancer update...so I finally started the Revlimid that I was so excited about (while simultaneously starting a new job!) and perhaps we waited too long between drugs (damn insurance approvals) or maybe it just didn't work, but it wasn't the easy street I had hoped it would be. Even while taking the pills every day, I started to have really extreme side effects...drenching night sweats, heavy itching, and I lost almost 20 pounds in a blink of an eye. It was a really hard time and I hated seeing people look at me with sympathy in their eyes.

Since I don't usually get all 3 side effects at once, I was scared, but since I also had just started my new job (where I told my new boss that this cancer thing was totally under control and I just had to pop a pill everyday--haha--what's that saying, "if you want to make God laugh, tell him your plans"?), I was more stressed out than anything.

Thankfully, I started another treatment plan last month...the combo of Bendamustine and Brentuximab (SGN-35), two drugs I've had individually, but never together, and they seem to be working! I haven't had a scan yet, but I gained 10 pounds and the night sweats and itching have stopped, so those are all good signs. Oh yeah--and this drug combo won't make me lose my hair!

Of course, life is never easy, so there are some complications in my work schedule...these drugs are given via IV and my insurance required that they are delivered in a hospital (ugh, damn insurance again!!) so I find myself leaving work early and running to the subway much more often than I would like. I want this drug to work, but it has complicated my life a bit.

Hopefully my next update won't be 3 months later and it will be good news!