Wednesday, June 1, 2022

Be Careful What You Wish For

Well, clearly, I screwed up. And I don't just mean that I ended the title of this post with a preposition. I mean something with much greater consequences, like barfing and cardiac toxicity and additional surgeries and the possible cancelation of our summer trip to England kind of consequences. And that last one really blows, because we have tickets to see Ed Sheeran at Wembley Stadium. 

In addition to Teddy and all of the regular tourist destinations, we're also going to see the ancestral home of Scott's family (the Berry Pomeroy Castle), the county in which my grandfather spent his youth (Surrey), Etihad Stadium (Manchester City's home pitch), The Prince's Head Pub (a.k.a. The Crown & Anchor Pub from Ted Lasso), the town of Oxford, the Jurassic Coast, and the Warner Bros. Studio where much of Harry Potter was filmed. In fact, I just received an email today from the Warner Bros. (the studio, not the siblings) letting me know that two new sections have just opened: The Burrow and Professor Sprout's Greenhouse. 

But enough of the good news. This is a blog about shitty news. I just swore. My apologies to any nuns, grandparents, or toddlers who are reading this. 

So, back to radiation and chemo. Oh, did you not know that's what we were discussing? It is. 

The last time I posted I was complaining about not knowing if I'm going to have radiation or chemo or nothing. I know the answer now and it is none of those options. The answer is BOTH. First chemotherapy and then radiation. 

How did this happen? It's easy. Everything that has a such a small chance of occurrence that the doctors just tell me about its possibility as an afterthought actually happens to me. Well, not everything. I mean today we heard that there is a 1% chance I could develop heart failure and/or Leukemia. I draw the line there. Blood transfusion? Fine. Scalpel slipping through my skin from the inside? That sounds reasonable. Nipples falling right off? Okay. But heart failure? No thanks. I'll not have that, if you please. 

In short, the OncotypeDX study of my cancer cells came back recommending chemo. The second opinion from The Mayo Clinic came back recommending radiation. So, damn. 

I just swore again. 

If you want to know all the details, they are these: 

  • It is unclear if this is a second primary cancer or a true recurrence. There is no way to tell at this point. Because of the proximity and similarity to the first cancer, we're calling it a recurrence. That said, it could be a recurrence of the Invasive Cancer or of the Ductal Carcinoma in Situ. I guess it doesn't really matter, though, does it?
  • My Oncotype score is 26. For someone my age with a recurrence, the threshold for chemo consideration is anything above 20 and the threshold for strong recommendation is 25. 
  • My score for distant recurrence within 9 years (meaning metastatic disease in liver, bone, brain, etc.) is 16%. 
  • My score for relative risk reduction by adding chemotherapy is >15%, meaning that my recurrence score drops to <1%. That's what doctors call a very substantial benefit.
  • We were given two options for chemotherapy treatment plans. One is called TC. It is 4 infusions two weeks apart. The other is ACT for Adriamycin, Cyclophosphamide, Taxol. This is a teaching blog. Soak it in. 
  • The ACT is more aggressive and more effective. It is 8 infusions, two weeks apart and is the one my doctor recommended for me based on the fact that Scott wants me to be around for several more decades of being the most entertaining part of his life. (He didn't say that, but I'm certain he would. I'm lots of fun.)
  • The chemo will start next week and my hair will fall out sometime in the next three weeks.
  • Each infusion lasts 3-4 hours.
  • The worst days will be days 3-7 after each treatment. 
  • I will be given strong anti-nausea medications at the clinic and to take at home. 
  • It's very likely that some foods will not taste the way I expect them to taste. I'm hoping that happens for zucchini. I don't like zucchini, so maybe it will taste like my mom's smoked turkey sandwiches or my dad's chocolate cake? Let's hope. 
  • I will be immunocompromised. Stay back all of you sickies!
  • I will probably develop neuropathy in my hands during the Taxol portion (also known as Paclitaxel, but still called T chemo). Iced gloves will be provided for my discomfort in an effort to prevent it.
  • Before I can start the treatment, I will have an echocardiogram (or an ultrasound of my heart), a chemo information session (also unpleasantly named Initial Survivorship Appointment), and surgery to place the port. 
  • The port is a small disk that will be in for the duration of the four months. It will be under the skin right beneath my collar bone with a catheter that feeds straight to my heart. The purpose of this to get the drugs into my bloodstream as quickly as possible so they don't have the chance to cause chemical burns or skin rashes from the inside out. Neat. 
  • I won't know much about radiation until Friday. So, stay tuned for that exciting announcement.
In closing, here are some photos for your additional edification. 


This is a port.
Isn't it tiny and cute? 

This is zucchini.
It is yucky.

This is Professor Sprout with a Mandrake.
Mandrakes are tiny, but decidedly not cute. 

This is the Jurassic Coast.
I think it's more magnificent than cute, but you may draw your own conclusions. 

These are metastatic cancer cells. 
They are beautiful, but I still don't like them.

3 comments:

Stinky Pete said...

Shitty indeed. I understand your opinion on zucchini. However, cut it in half lengthwise then rub with olive oil, salt and pepper. Throw face down on grill or face up in broiler until a nice char develops. Eat. Not shitty.

Anonymous said...

Thinking about you…

Anonymous said...

You’re in our heart and prayers💝💋