Great News

I have some phenomenal news. I get to go to Denver to take Jesse to school! 

During my visit with oncology last week, my doctor and I agreed that the cost of missing out on that rite of passage was just too high. 

Her decision might have had to do with the fact that she is also a mother ... or maybe it was the tears. I'm pretty close to tears all the time now, so that part is kind of hard to avoid. 

With some precautions and added protections, she feels like me going is a reasonable risk. 

On Friday I went back to the oncologist and received a COVID antibody medication called EVUSHELD, which is a pre-exposure prophylaxis. So, I'm super-immune now - not COVID-proof, but definitely more COVID resistant than before. Think of me like a Timex watch. If you splash COVID all over me, I could probably repel it. But if you submerge me in a vat of COVID, my protections would probably fail. 

If you want more precise evusheld edification, I'll tell you that it "is an investigational medicine used in adults and adolescents who have moderate to severe immune compromise due to a medical condition or have received immunosuppressive medicines or treatments and may not mount an adequate immune response to COVID-19 vaccination," Administration involves two injections of tixagevimab and cilgavimab. They're really catchy names I think. 

Supposedly, my super-powers last for six months after which time I will be eligible for two more really substantial injections into my buttocks. Hopefully, by then I will be back to health and ready to battle the pandemic like the rest of you. 

I'm also going in tomorrow for some extra bloodwork to determine if I should have some blood cell producing booster. As I wrote that, I realized that I have no idea what that is. What I've been told is that if my counts are dangerously low, there will be some action taken. I'm not sure if that is some sort of injection, infusion, prescription, or blood transfusion. We shall see.

Anyway, all of this means that I'm not going to be left behind when Jesse moves, which is the best news I've had in a long time. Colorado, here we come!

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.