On Monday, Tim had his check-up at the cancer center. We are not getting 3 month intervals now. It’s down to 2, and it seems 1 month now, after this most recent visit. His numbers took the highest jumps they have. Kappa was moving just a little bit every 3 months, now it jumped 36 points in 2 months. M-spike from .51 to .60 . *SIGH* We saw Dr. V for the first time in a LONG time. He threw a monkey wrench at us and said he wants him to do Ninlaro instead of Velcade. Velcade was the drug Tim used last which put him into 2 and 1/2 years of complete response and over 8 years off all chemo meds. It makes sense, and this has been told to me by an MM specialist too, to re-visit that drug. It has been our plan for a long time. When I asked why he would choose Ninlaro over Velcade, his first answer was its convenience, being an oral medication. I stated that I didn’t want this choice to come down to that, that we lived 9 miles away and Tim is self-employed. So we did a back and forth about the two drugs. This causes less of that but more of the other, etc. One of my biggest fears about this drug is the two people I heard about on the MM Facebook sites that got encephalitis from it. This was something I mentioned to the other doc Tim has been seeing when she mentioned Ninlaro and I don’t think she was even aware of that side effect then. I also worry about the GI issues it causes. In the end, the doc basically said he would not write Tim for Velcade, that the other doc he normally sees might, but he would not. But, out of the blue, he mentions a different doc, Tim’s original one who started the MM program here, doesn’t like Ninlaro. I was so stunned, I forgot to ask why. In the past, when that doc has told me he was unimpressed with drugs, it was because he felt the efficacy was hyped and the side effects substantial. So, what to do? I don’t like the idea of Tim going on a drug that has only been FDA approved for 10 months. It is VERY common that you start seeing more long term side effects, even severe ones, after a drug has been approved for a while and they start popping up. Velcade has been around for years but that would be 2 days per week at the cancer center to get a CBC, see a doc, and get a shot in the belly. Definitely hard to run a business around that. And apparently Ninlaro causes less neuropathy and Tim did start getting that when he was on Velcade. Here we go again. Back to making gut-wrenching decisions where there is no real right answer and always such risk. I thought of that saying, “choose your poison.” It’s spot on in this case. This appointment made it all too real for Tim. I think he was hoping he could keep pushing off treatment if his numbers kept making tiny moves, but, now they’re moving faster and he’s staring chemo in the face again. He’s bummed.
And, the reality and sadness didn’t end there this week. Tim got a phone call early this morning and came rushing into our bedroom saying that his buddy, Mike, saw something on Facebook that didn’t look good about their friend, Ron. I turned my cell phone on, got on Facebook and saw that Ron is dead. Just walked out of a restaurant last night with his girlfriend and died of a massive heart attack in the parking lot. WTF?????!!!!! Yep, just like that. A 52 year old man, with a heart of gold, twin boys in their early 20s and 2 little girls from his 2nd marriage that are like 6 and 8 or something. Gone. Tim is stunned. We all are. But, more than that, we’re all pissed. Ya know, jerks in this world are out there living charmed lives. And the good guys……….like the song says, they die young, or get screwed at every turn. In fact, from what I heard, this guy’s first wife, who is an abusive psycho and lives to make his life miserable, was dragging him into court again today or tomorrow for the umpteenth time. I’m sure stress didn’t help matters with Ron.
On Sunday, Arnold Palmer died. I met him 26 years ago, a gem of a man. He was 87 years old. That is not a bad run at all. I can remind myself of the circle of life and know that he lived a really long and wonderful life. But where is the justice in a 52 year old man, loving father, faithful friend, incredible basketball coach, a true sweetheart of a guy, dying in a parking lot and leaving behind young kids and a ton of people whose lives he was impacting in a positive way?
People flippantly say, “life isn’t fair.” Yeah, well, from where I sit, it ain’t even freakin’ close.
God bless you, Ron. You are a lovely guy, a true gentleman.