I have started this post so many times in the last week. So much has gone on since I was last here. Catching up would be impossible, but I am eager to get back to blogging and visiting my bloggy friends again. It may not be the smoothest comeback as I've got some stuff ahead still, but I'm going to just jump back in the saddle and see where the trail leads.
While the first 3 weeks or so after surgery were the roughest thing I've physically and mentally had to go through to date, the last 3 weeks things grew progressively better. The horrible nerve pain eventually settled down and I could finally relax into the more familiar discomfort of skin and muscles doing their healing thing. Last Sunday I finally made it back to church, and it felt so good to be there. There is still a lot of healing to do, but I have been feeling more and more myself as the weeks have ticked by - well, until earlier this week when I needed another small surgery.
Let me backtrack a bit...
From the beginning, my cancer has been considered "early caught", and only moderately aggressive. While more things were found after surgery, and some cancer cells were more aggressive than first thought, the prognosis was (and still is) great. With a mastectomy, and not believing there was lymph node involvement, the chance of recurrence in the next 10 years was originally thought to be between 5 and 8%. I'd gladly take those odds and a few hundred dollars to the poker table - if I played poker. Which I don't. But still... not being much of a gambler, with those numbers, I was seriously wondering why my medical oncologist would still be talking to me about taking hormone therapy pills with potentially nasty side effects for the next 5 -10 years. "No thank you", were the only words that made sense to me. That was in May.
After my surgery in mid-June, I was told I was a candidate for having the Oncotype DX test run on my tumor(s?) to determine how likely my cancer is to recur, and how likely my cancer would benefit from chemotherapy. Because, the after-surgery biopsy found lymph node involvement (micrometastases, to be precise), I was beginning to not feel so cocky about my recurrence risk, and was very open to having this test run. About a month after surgery, I had the results.
It turns out my chances of recurrence are a lot higher than 5-8%. While the number is an estimate, seeing (in the middle square) I actually have approximately a 22% risk of recurrence in nine years, - even if I agree to, and can tolerate, the years' long hormone treatment my oncologist still wants me to consider - I became an easy sell for chemotherapy.
Actually, my oncologist wasn't pushy (possibly because I wasn't looking like I'd be easily pushed into hormone therapy in May), he did think, with this new information, chemo was a good idea. Like many women (and a number of men, no doubt) with early caught breast cancer, it came down to making a decision that I could live with if cancer did recur later. While seeing a possibly 22% chance of recurrence was startling, it certainly made a hard decision easier to make.
So... last Tuesday, I walked back into the outpatient surgery center and submitted myself to having an infusion port installed. I am a difficult "stick" at best, and the doctor encouraged using a port, so I good naturedly agreed to it.
Four sore days later, I am kind of regretting the port, but I remain hopeful the soreness will eventually abate. At the moment, coughing hurts. Laughing hurts. Standing up hurts, sitting down hurts. Even my chest hurts again. Some nerves have been reawakened, and I am not happy about that. Monday is my first chemotherapy infusion, so I will take it for its first run through then. I hope I'll see the benefits of an infusion port at that time, and will be glad I agreed to this thing.
For the next twelve weeks, if all goes according to plan, I will have an infusion approximately every 21 days. I hope to feel reasonably good for most of that time; I'm bracing for being wiped out by the end of it. I have high hopes I'll be in here posting somewhat regularly again. While I most definitely want to post about just regular life stuff, I also still have the thought that I want to write about some of the experiences I went through during testing, diagnosing, and even the upcoming chemo experience. Lots of trauma has happened. But lots of good things have happened, too. Whatever I share, however I share, my telling of it will not likely be linear. But you've probably figured that out already.
I talked about this being a ride I wanted to climb out of in an earlier post. After having the infusion port installed, I was wanting off again - BIG time. This past week I've wanted to give the cancer right back. I'm not made for marathons, be they physical races, or mental trials. This has been all of that. I don't know where the stamina comes from to keep moving forward through it, but when you get a cancer diagnosis, you find it somewhere. One friend kindly told me I was "so brave", to which I could only reply (perhaps even a little mystified by it myself), "I don't really have a choice". I felt kind of bad later, worried that my friend may have thought I didn't appreciate her generous words of encouragement. They actually were hugely encouraging, but honestly... it really is a matter of digging deep and finding the resolve. I think that all of us have that capacity. Some people depend on their strong constitutions. I like to think I have one, but faith is ultimately my bulwark.
From a text I wrote to a group of friends in early July:
"While the nerve pain I've experienced with my bilateral mastectomy has been brutal at times, the meals, visits, texts, cards and phone calls have been so much more than a blessing. The personal, human contact friends have extended to me have lessened my suffering. These things lifted me from suffering to hope in these last two and a half weeks - over and over again.
I am so thankful for an early-caught cancer. For ever-modernizing cancer-detecting equipment. I am also thankful to be living in a time where most insurance companies are required to "make women whole" again after breast cancer surgery - giving great latitude for what that means for different women.
I am also thankful for friends, and for faith in God - who has so much higher purposes for us than intact bodies, and freedom from pain. While my hope and goal is to get pain free, I keep in mind that that is secondary to whatever purpose there may be for me in this experience."