The last week has been tough. I lost my melanoma buddy, my friend Bob. I spent more time on the phone with him than anyone else in the last year. He’s somewhere amazing though, somewhere filled with love and better than here.
Friday I got a call to tell me my chemo (Zelboraf) has failed and my cardiac tumor is growing, the biggest it’s been. Straight from MRI report: 2.3cm x 3.7cm x 6.3 cm mass attached in the right ventricle and extending up into the right atrium. Here is the amazing part – Normal left and right ventricle size and function. Also, no apparent destruction or infiltration of heart muscle or tissue. My friends – this is very scary business.
Friday was also the day of Bob’s visitation. I was in the emotional state of a 10 car pile-up and trying to hide it. Unsuccessfully. I love you friends.
Saturday was Bob’s beautiful funeral mass and my armor for the day was my 6 year old. He didn’t want to go and Alan was out of town for the day with #2 playing soccer. Finally I just sat down and looked right at him, and said “Mr. Bob was my friend and I miss him. I’m really sad and I don’t want to go alone. Will you go with me?“ and a little tear trickled down his cheek to match my own and he hugged me and said “Mommy, I’ll go with you.” He was an awesome date. I held it together for him.
Sunday morning I went for my CT scan which checks me from neck to pelvis and looks for anything out of whack. My game face is wearing thin. My new Cursillo friends give me faith to get through the next 12 hours. I am so grateful and blessed.
My CT is unchanged from last time – no melanoma. My brain MRI is showing nothing new, nor growth on the existing two, but maybe a little swelling from radiation treatment (talking 1mm here, so nothing is sure in scans at that level). I feel good and am blessed in many ways but then there’s Roscoe. I’ve had this heart tumor so long I’ve decided to name it – it’s lasted longer than some of the small pets we’ve had.
There was the mysterious double hamster suicide of 2011 (I suspect inbreeding) as well as the hermit crab massacre of 2009 where nary a claw remained. I will spare you other horrific tales.
My cardiologist consults with a surgeon at MD Anderson (saving me airfare) and they will not take Roscoe out until he becomes a problem (WHAT, WHEN IT IS JUST ABOUT TO KILL ME?). Seriously, he’s great but then there’s the whole question of whether I would even do open-heart surgery which is “very serious” or not. Right now, I would. If I had cancer everywhere, I wouldn’t. Fortunately I haven’t had to make that decision yet.
Roscoe – I truly despise you. Now things are all messy and cancery again. The good times are getting shorter and the path is narrowing. I am tired of it all. Cancer may bend my faith but will not break it. It may get my body eventually but it will never get my soul.
So my smooth talking oncologist got me to agree again (attempt #3) to try to get into a drug trial here in Nashville. It’s a good one – Merck’s Anti-PD1 drug. Showing better results than the drugs I’ve been on and fewer side effects. If I get in and if it works for me. I’m not hanging all my hope on it. I’m zero for two here. I’ve got someone bigger to take care of me anyway.
Tomorrow I see the endocrinologist to help me taper off my steroids. Monday night I was hurting all over and shaking like an addict. Not a great way to get a good night’s sleep. My stomach is more upset trying to get off this darn steroid than the havoc it wreaks when I take it. Go figure.
Next Tuesday’s brain MRI will see if my brain is stable (if not, onto something else, don’t know what). If it’s stable, then PET scan, bloodwork, send everything off the overlords at Merck and if all falls into place I’m hooked up and dripping 3 weeks from now. This trial has 3 parts – low dose, high dose, and chemo. The good thing is if you don’t respond to chemo (few melanoma patients do, or for very long) then you change over to getting the trial drug.
I pray for strength for my family now more than ever. This isn’t getting any easier for any of us. I feel like my fate is in God’s hands. Last week I said I guessed he wasn’t done with me yet but I didn’t expect this so soon.
I have a big sign hanging in my kitchen that says “Every Day is a Gift”. I try to live it, but the last week, capped off by senseless evil in Boston, makes it difficult. So much heartache and so many unanswered questions. Fear sometimes makes it hard for me to see the blessings and say “Thank You”.
We keep going. If you don’t read Jesus Calling by Sarah Young, I highly recommend it.
April 15 (Yesterday)
“TRUST ME, and don’t be afraid. Many things feel out of control. ….accept the challenge of something new. I lead you on from glory to glory, making you fit for my kingdom. Say yes to the ways I work in your life. Trust Me, and don’t be afraid.”
Peace and Love to you all,