I’ve earned myself quite a reputation – and a nickname – at SCCA. The nickname you ask? Michelle “Redneck” Nelson.
It all started a few months ago when I sent an email to my nurse, Patty, regarding a few of the bucket list items that I had specific medical questions about – specifically the shooting of a gun and the tattoos. Now, I was in the chemo fog when I sent the email, and apparently I asked if I could shoot a shotgun in this email. Not a handgun, but a shotgun. Like, Annie, get your big, giant, double-barrelled shotgun with a lot of kickback and shoot it at the gun range.
In attempting to do my due diligence, I created quite a ruckus, especially since it would be quite bad for me to shoot a shotgun considering my compromised sternum. Besides Dr. Linden not wanting to sign off on this, she forwarded this on to radiation oncology and then had questions for me. Melissa, the clinical trial coordinator got a big kick out of it. Anette, my favorite chemo nurse, is the one who christened me “Redneck” Nelson after seeing the email in my chart. I haven’t been able to live this down yet, months later, despite explaining and re-explaining my mistake.
The bucket list is an ever-present reminder of the constant balancing act my life has become – one foot firmly planted in trying to fully experience and enjoy my life while having the knowledge that this aggressive cancer is ever-nipping at my heels, and will eventually be my demise. At any given moment, one has to be sacrificed in order to accept the other.
After week one of this FINAL chemo cycle of the clinical trial, it became crystal clear to me that I had made the right decision to make cycle 7 the final cycle of chemo. I was exhausted, both physically and mentally, had eaten almost nothing all week, and the neuropathy in my feet is the worst it has been. When I went in for my week two infusion, Dr. Linden gave me THE BIG TALK.
During THE BIG TALK she basically wanted to remind me that within the next couple of weeks, as I transition onto the PARP inhibitor and start to recover from the chemo being out of my body, I am going to start to feel – physically – a lot better. She wants me to increase my physical activity slowly, about 10% week-over-week so that I don’t overdo it too much and then fall, or hurt myself by overextending. This includes eating and drinking, as well. I can appreciate where she was coming from on this. During week one, I go up and down the stairs on average ONE time per day. So, yes, I need to pace myself.
But, Dr. Linden also talked to me about an emotional piece that goes along with feeling better physically – potentially “forgetting” the reality of the diagnosis. For me, especially, I know this concerns her, because the nature of my triple-negative aggressive cancer is that, if the PARP inhibitor doesn’t hold me stable, it could potentially be a “quick, back to chemo” situation with no time to spare.
After THE BIG TALK, Dr. Linden quickly moved into her plan for what she will do when the PARP inhibitor fails. The kinds of chemo she would try, including Xeloda, which is an oral chemo, and possibly Navelbine, which is the “easier” of the chemos that I was doing on this clinical trial. She mentioned the fact that my first scheduled scans would be sometime this summer, meaning that if we see progression at that point, she knows she might have to give me chemo prior to our Tuscany trip in September, so she was thinking ahead to what she would want to do.
Truly, I can appreciate this. And, my friend Dawn summed it up for me very well the other day, when I was crying to her thinking about doing another chemo. I have always asked, nay expected, Dr. Linden to not only be ten steps ahead of this game, but to keep me informed of the plan, in her language. This is the first time that I have been emotionally spent and not up to the task of facing what comes after our big risk. Since my diagnosis, we’ve done two chemotherapy combos – the first one was extremely easy on me physically and was a spectacular fail; the second was five ridiculously arduous months for me emotionally and physically, which also completely taxed my entire support system.
I can honestly say I will never do another treatment like that clinical trial again. There was zero quality of life. Anyone that challenges that decision wasn’t here day in, day out (I love you, Eric).
I don’t think anyone that knows me would consider me to be an optimist. I don’t quickly put myself in the pessimist category, either, though — I classify myself as the “skeptic”. I think the thing is, hope against hope, I know the PARP inhibitor is the only “shot” I’ve got outside chemo. I need some recovery time, mentally, to face the chemo bed again. So, Dr. Linden talking about the next chemo when I still have this one coursing through my veins just wasn’t enough time for me.
Until then, we forge on. I am ready to earn that nickname by shooting a gun (not a shotgun) with my brother, Raj, soon. Birthday tattoos, Nadia? The bucket list waits for no one. And I walk the tightrope, never looking down…