I realize I have not posted anything beyond the port insertion surgery story. I find I’m not really all that inclined to document the minutiae of chemo/radiation/chemo. I tolerated the chemo infusions relatively well considering what it was. I often overheard other patients talking to the nurses about side effects and would find myself relieved that I didn’t have it so bad (and feeling somewhat guilty at times too if we’re honest). I never had any nausea or stomach issues. Of course I grew weaker and more fatigued but I was able to continue going for walks through the Taxol (the first, and “easier”, drug). My biggest issue was joint pain. After 12 weeks of weekly Taxol treatments, I switched to Adriamycin and cyclophosphamide (also known as the Red Devil) for four treatments over eight weeks. (Usually they start with Adriamycin & cyclophosphamide) The first couple of treatments definitely hit me harder than Taxol had. There were days I could barely get out of my chair. I would go from bed to recliner to bed. I got up only to go to the bathroom. Hubby would bring me food. And honestly, my memory from that period is very fuzzy. But since there were two weeks between treatments, I would start feeling slightly better right before I went in again. We moved the weekend before my third treatment. I was able to rally enough to help with the move…some. And unpack a little bit before I was down again. But that treatment I ended up with Hand Foot Syndrome. Basically the chemo leaks out of capillaries in the extremities and causes heat sensitivity and blisters. Somehow the worst of it cleared up before the last treatment. It wasn’t completely gone but at least I could walk.
I had my final treatment Monday, June 1, 2020. My parents, both sisters and their families flew in on Thursday for our oldest son’s wedding. My sisters, brothers-in-law, three nieces and one nephew stayed with us. (My parents stayed in a hotel within half a mile of us). The wedding was on Saturday the 4th. We hosted the reception at our new house. Yes, the one we moved into 3 weeks earlier. It was all wonderful and beautiful and I loved every moment…except for the mouth sores I developed. Somehow I did not feel awful though. I think the adrenaline and excitement carried me through.
(Pics below: My last day of chemo and the shirt my mom sent for the occasion; My sisters and I at the wedding. Yes, I’m wearing a wig)
On June 15 I had an MRI. They did not see any cancer on the scan. But when I had my lumpectomy on July 1st, there was still a tiny bit of active tumor. Just 15% of the original size. But it was there…until they removed it. I count July 1st as my “cancer free” date.
Radiation started on August 10 and lasted seven weeks. We discovered I had “radiation resistant skin”…so I didn’t burn as badly as expected. Oh I still burned. But it could have been worse.
In October we tried oral chemo to reduce my chance of re-occurrence. I was supposed to do take it three weeks on/one week off for six months. But as soon as I started my second round, I developed Hand Foot Syndrome again. My oncologist office told me to stop taking it immediately and after it cleared up, we would try again at a lower dose. I started crying one night at dinner and told my husband I didn’t want to start taking it again. We talked about statistics and the impact it was having on our life and decided to forego any further treatment. It all impacted my husband at least as much as it did me. I would say more so. I went into my next appointment (Nov 18) prepared to for push back but my care team was incredibly supportive. They agreed that we had made the best decision for our family and affirmed that I had been through aggressive treatment. And they encouraged me not to second guess myself.
And here we are. Almost three months from that last appointment. I still have to have check-ups every six months. And I really should go get my port flushed. I’m still weak but am getting stronger. I still have joint pain/stiffness, some days worse than others. I still try to claim chemo brain but I’m not sure that really flies anymore. And now I have enough hair that it looks like a cute little pixie cut.
I told my oncologist at my last appointment that I “want to be JUST a diabetic” since I never had the opportunity to figure that out without chemo/steroids/general trauma to my system. And I finally have the bandwidth to really start learning about it, and how my body responds. There are a lot of factors, only a handful of which are easily controlled.
It’s time to move on from the cancer saga. There’s so much else I want to write about and focus on. I’m always willing to answer questions. If someone would like to me to expound on something specific, I’m happy to do that (Assuming it’s not a creepy request. This is the internet after all)
Until next time…
(Current picture. NOT wearing a wig)