I have been keeping a record of my daily side effects so that I can compare them to each treatment, and to predict when a side effect has gone into hiding. After the first treatment, for example, it was fatigue and a slight rash that took up much of my time and attention. After the next treatment, the fatigue was more heightened, and so was the rash, but after #3, both went into submission fairly quickly. It was the neuropathy in my fingertips and hands, along with the accompanying pain that became my constant nemesis after my third treatment.
Numb fingers and hands made brushing my teeth, blog-writing, and making tea challenging, but when the pain started to accompany the numbness, I was pretty much incapacitated because the pain tended to travel up both arm muscles, into my biceps, before finally resting deep into my armpits. I felt like I'd been beaten up from the inside out.
Sometimes, it didn't stop there, but would inch its way across my chest and settle where my heart lay beating. I often wondered if I could be having a heart attack but would never know it since my heart seizes up into a fist, unable to unclench itself--no matter what medication I take, or stretch I do.
The symptoms became worrisome enough a week before treatment #4 on September 17th that my oncologist wanted to get another CT scan before continuing with anymore infusions. Because my lymphoma began in the space between my lungs (mediastinum) and new pain was radiating there, it was prudent to get the area scanned in case lymphoma was going rogue on its own, proliferating out of control.
Immunotherapy is supposed to be a miracle cure when it works, but when it doesn't, it's pretty much a disaster as it tends to teach the body to turn against itself instead of attack any cancer. With an elevated LDH and new pain, this was a concern for all of us.
Fortunately, the CT showed that the drugs are doing their job because my 2.0 cm tumor is now a mere 6mm in size, a 75% reduction!
But sadly, that good news weeks ago was overshadowed by my concern over the unpredictable and unrelenting pain that continued to cause sleepless nights, many tears, and many more days spent recovering on the couch. But with a new anti-inflammatory prescribed on my last appointment, it seemed to do the trick of alleviating the body aches.
Just not for long.
The pain, sleepless nights, eating Vicodin like candy, and too many days feeling out of commission continued. But when I arrived at my appointment last Thursday, ready for my fifth treatment, I was surprised when my oncologist put a halt on any further infusions. My relentless, on-going side effects revealed too much toxicity and he wasn't willing to take a chance at losing more of the function in my hands or arms.
I felt stunned, relieved, grateful and overwhelmingly sad. Would I now have to start over?
The plan is to get another PET scan that will give new oncologists in Seattle valuable information about how to treat me going forward.
But just a few days after NOT receiving treatment last week, dare I say I may be feeling better?
I'm certainly sleeping better, at least for longer stretches of time, and my Vicodin use has been cut at least in half. The pain continues in both hands and arms, along with pain/tingling/numbness in my fingertips, but the ache has suddenly disappeared from across my chest. Fatigue continues, but I feel my ol' perky self returning.
All good news, indeed.
Despite my adamant reluctance to go to Seattle for further treatment, I do recognize that I am being fervently watched over and taken care of, and perhaps, Seattle is just the next right move in the on-going web of my care.
After all, everything that has been put into place (or taken away) thus far has worked in my favor.
Trust has become my new meditation and gratitude has become my new prayer.