It has only been 10 days since my last post and yet, somehow it feels like a lifetime.
I'll cut to the chase and let you all know that I am feeling much better and human again, but I'm not going to lie...this last week included a few of the toughest days I have ever experienced.
Last Monday, Mike drove me downtown to Karmanos for the biopsy of my sacrum. Due to the coronavirus, he had to drop me off at the front door at pick me up hours later, once the procedure was over and I recovered from the anesthesia. I consider myself a pretty strong and resilient person, but it sure would have been nice to have him there with me.
The biopsy went well and the surgeon told Mike over the phone that he believes he obtained enough samples of the tumor for it to be tested for this particular mutation. It was sent off to the lab and will take a few weeks to hear back on the results.
While the biopsy went as well as it could, the nerve pain down my right leg increased dramatically in the days that followed. This type of pain is unlike anything I have ever experienced and so hard to even put into words. It's a horrendous combination of burning, stabbing, throbbing, tightness to the point of feeling like someone is ripping your muscles and nerves right out from under your skin. There is no position of relief. No way to stand or lay that brings comfort. No hot pack, jetted tub, stretch or massage that makes any bit of difference. The pain became so bad that while Mike threatened to force me to the ER, I tried everything and anything I could get my hands on to see if I could find any relief - or honestly, to just knock me out so that I could be relieved of this misery. I was completely desperate - and scared.
It sounds so dramatic, even as I sit here and type it, but it is no joke. I have been through a lot of physical pain over these last nine years and I think the only thing worse than what this has been like was when a tumor fractured a vertebrae a few years back.
Luckily, we didn't have to go the ER on Monday night and I finally passed out and was able to rest. I started radiation on Tuesday morning and while I laid perfectly still on that hard steel table, tears flowed right down my face. It was not only the pain that brought me to tears, but the forced stillness and resulting acceptance. Here I am again...for the fourth time...I am relegated to this place...to this room...to this machine...to this table...to be radiated...to try to tame this beast...this beast who just won't quit.
By no means am I ready to quit, but it is extremely difficult to stay mentally and physically prepared for the "battle" when you are entering it already worn down from pain and exhaustion.
The very kind radiation techs, whom I have known for years, were able to get ahold of my nurse who came to see me after that first treatment. She was surprised to see the look on my face and knew right away that I was feeling bad. She assured me she would talk to Dr. F when he arrived that afternoon and call me with the plan for better pain management. When I heard from her later that day, the pain was so intense that I had to ask Mike to go get the scripts filled for me. Once he returned home with the medications, I realized it was the same nerve pain medication (gabapentin) and steroid dose pack that I was on the previous week, with minimal reduction in my pain. I felt discouraged that this plan might not be effective, but obviously wanted to try anything to get relief.
Fast forward to Thursday, and I am back at radiation for my third consecutive treatment, and in tears once again. This regimen offered very little relief and the pain had become nearly unbearable, I saw Dr. F after radiation was concluded and explained my symptoms. He shared that the effects of radiation could take 6 weeks to kick in and that in the meantime he wanted to put me on oxycodone. While I was nervous to take such a strong medication, I knew that something more aggressive needed to be done to get this pain under control - and fast.
Within 30 minutes of taking that medication on Thursday afternoon, I had a huge reduction in my pain! I was so grateful and relieved, but soon realized that there was a new price to pay. The oxycodone brought a wave of nausea, dizziness, fogginess and groggy feeling that lasted at least 4 hours after the smallest dose. While feeling such relief from the pain, I felt discouraged and lousy from these side effects -but it was worth it in order to finally get some true rest, both physically and emotionally.
I continued with radiation on Friday and although Mike had to drive me due to the dizziness, my pain remained under control and I was grateful!
Going to radiation appointments every day has always felt like a sort of "Groundhog Day". But now with the coronavirus, social distancing and not working, it REALLY feels like "Groundhog Day". Attending these appointments every morning is my only excuse to leave the house, aside from walking the pups. I get to change into those fashionable blue paper pants, which are 100 sizes too big and threaten to fall to my ankles every time I move.
Back on March 19th when I found out about the recurrence, we completed the simulation for radiation. In addition to tattooing parts of my abdomen, a mold was made around my legs that would keep me from moving while on the table. Once the techs place this mold down, they cover it in sheets and I climb up on the table and get into place.
Once I am in place, I have to pull up my shirt, and shimmy down my awesome paper pants in order to expose my entire lower abdomen and hips. I recorded some time lapse footage for you here, as I did years ago during another stint of radiation. Pardon the blurred out areas - didn't want to share anything indecent with ya. ;)
I completed 4 treatments last week, will have treatments every day this week (Mon-Fri), and will have my 10th and final treatment next Monday. I am praying that I receive pain relief from radiation much sooner than 6 weeks from now, and in fact, that might already be the case.
On Sunday, I decided to try to see how the day went without the oxycodone. It made me feel so crappy that it was worth testing the waters to see if I had any relief without it. And thankfully, I did! I haven't taken it the last few days, and my pain has been very tolerable with gabapentin alone. *Cue, HUGE sigh of relief.
So, the good news is that I am feeling a bit more like myself for the first time since my birthday 10 days ago. I am still able to enjoy daily walks with Mike and the pups, get in comfortable positions in order to binge Netflix shows, and feel less dizzy and groggy so that I can laugh with friends during all these fun Zoom chats. I am still a little foggy, have other fun GI side effects from radiation that I will spare you from, and seem to be battling a bit of fatigue.
These new times we are living in due to the coronavirus are uncertain and unprecedented for all of us. In some ways, life with incurable cancer has prepared me for this....living with uncertainty, feeling out of control, not knowing if you can be well one day and sick the next. Learning how to move forward and navigate life while accepting that so much is unknown, is something I have been forced to practice for many years now. I try my best to remain grounded in gratitude, express and stay curious about my emotions in healthy ways, and surround myself with people who lift me up. Of course, that last part has been tough in a time of social distancing. But, thank God for phone calls, Zoom, FaceTime, social media, texts, snail mail, meal drop offs...and all the other ways we can still show love and support for each other. For that, and so much more, I am abundantly grateful.
Thanks for checking in and supporting us along this latest bump in the road. And for bearing with my long winded posts...let's hope each week is not as eventful as this last one was.
Please stay home and stay well, my friends.
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