Wednesday, August 17, 2022

It's Been a While

You may have noticed that I haven't blogged in a long time. It hasn't been for lack of thought. I consider writing all the time. Sometimes I even compose paragraphs in my head ... but then I remember that I'm tired of everything. So, then I don't write anything. 

Unfortunately, people seem to like my writing and keep mentioning that there hasn't been much of it to read, lately. I know they only say that to be nice and to show their interest in my well being, but it feels like pressure. I don't want to write. I'm sad. Things are heavy. 

There is so much to say and yet saying anything seems so hard. 

However, I also promised that I would put updates here so that everyone didn't have to incessantly ask me how I'm doing. So, I guess I ought at least do that. 

  • Tomorrow is chemo session number 6. 
  • This will be the second round of Paclitaxel, which is a different poison than the first four treatments. 
  • Paclitaxel does not cause as much nausea as the Doxorubicin+Cyclophosphamide. 
  • It also doesn't cause red tears (sorry, Charlotte).
  • Paclitaxel does still cause decreased white blood cells, platelets, and red blood cells, keeping me at risk for infection, bruising, bleeding, and anemia.
  • It also causes peripheral neuropathy, which presents as numbness, tingling, or a burning sensation in the hands, feet, and mouth. 
  • The preventative measure to combat peripheral neuropathy is to ice the areas that are likely to be impacted.
  • I have special ice mittens and ice socks which I have to keep rotating into the freezer to keep my hands and feet cold for the full treatment, which lasts three hours. 
  • I hate it.
  • The neuropathy is cumulative, which means this weekend will be worse than two weeks ago but not as bad as two weeks from now.
  • My last chemo appointment will be September 15.
  • A little over a week later, on September 26, I have my appointment for radiation mapping.
  • During that appointment, I will get a couple of tattoos and hang out in a CT machine for a while. 
  • A week or two later, I'll start the radiation treatments. They will be five days a week for five weeks. 
  • The anticipated immediate side effects of radiation include rash, blisters, swelling, darkening of the skin, fatigue, and tissue changes. 
  • I don't want it. 
  • To add insult to injury, my darling Jesse (née Laila) leaves for college in less than three weeks and I don't get to go. I will have just gone through round 7, will be feeling terrible, and should not be on an airplane. I hate this more than everything else combined. 
Basically, my tolerance for this bullshit has worn thin. It's taking too long and it's taking too much. I'm unhappy most of the time, but I try to keep that inside as much as I can. I'm starting counseling with the oncology therapist on Monday. 

What I've learned is that cancer is a very isolating disease. I have a lot of people around me, but everything I'm feeling (except the port and the hair loss) is invisible. The pain, the nausea, the fevers, the fatigue, the digestive issues, the neuropathy, the low blood counts are all weights that I carry alone. The only way for my network to support me through those symptoms is for me to talk about them and that just seems like one more task that I don't have the energy to do. 

I'm having a rough time, friends. 

8 comments:

Duffy Pearce said...

It's not your imagination. You're walking through an unbelievably tough situation. It's a miracle that you're doing it with such incredible grace.

Mags said...

I have to admit, I hoped your first tattoo (should it ever occur) would be under more auspicious circumstances. Sorry it's all such crap and thank you for updating us even though it was hard and stupid.

Anne Dougherty said...

Love you.

Charlotte said...

If the comment was for me…I’m sorry. I can’t imagine wishing red tears upon anyone. Though I vaguely recall thinking they would only be produced by someone with super powers. I am certain you don’t feel like that right now based on your brief but much appreciated update. All the things are so hard and rotten and unfair. That said I’ve never meet someone with such poise, strength and ability to kick ass when needed. Your second wind is coming. ❤️

Anonymous said...

I always knew you were amazing, but typing flawlessly while wearing ice mittens??

Anonymous said...

Thank you for updating us all even though you didn’t want to and are dealing with more than I could ever imagine. Hoping for easier, less crappy days ahead. xoxo - Carrie

Jim B. said...

You are an incredible woman. Thank you for being so honest! Once they stop putting that stuff in you to treat the cancer crap you will get through it. I am sorry it is so tough but we will only root for you more and pray harder. You will beat this!!

Anonymous said...

Thank you for opening the widow at a very rainy time
Love you, Cathmomnona