Stuff I’m Not Okay With

I’m struggling, I’m not going to pretend different. I have spent my entire life, until now, taking for granted how I felt physically. I slept good, enjoyed food and drink in moderation (well maybe sometimes a little more than moderate) and could manage whatever I needed or wanted to do in a day. I could easily plan to do things in advance. These days I’m reminded of what my grandmother always said – “God willing”.

Instead, I’m reaching for medications to battle the side effects of the aggressive treatments that Dr Shin (radiation oncologist) delivers during radiation and that Dr Namakydoust (medical oncologist) delivers during chemotherapy / infusions. We are done as of last Thursday with carboplatin which has the most side effects, including massive doses of dexamethasone. Last dose was Saturday, December 11. I stopped a couple of other medications that I took to battle side effects, and the doctor said it could be two to three weeks for me to notice a difference.

In the meanwhile, Dr Shin has been very straightforward about radiation side effects. So much so that when I asked about treating possible side effects he prescribed all the medications available to treat what will happen. When I mentioned yesterday that I can do anything for 13 more days (over the next 21 days) he said they last longer and that I can expect to feel worse before I feel better. The two areas by my neck are close to the surface and can be seen, the one down the middle of my neck can not be seen. I’m guessing it’s the steroid moon face and football player neck that hides the fact that I’ve lost about 13 lbs.

Swollen lymph node glands

Apparently my radiation is very aggressive and also hits my lung tumors since they are so close. My skin and my esophagus should bear the brunt of this treatment. He said it owill be a while before swelling goes down. Just one more thing that adds to my discomfort. And even to me that sounds whiny!

I miss being affectionate and social. I love hugs. I love hanging out with new friends and old. This is something we are all struggling with, but since I am immune compromised there is a whole other level of risk. A random flu delayed my treatment for a week, catching a cold could do the same. I actually have a mild panic attack each time someone gets too close!

Carrying on a conversation presents a whole other series of challenges. Depending on the day, I have varying levels of laryngitis. Throw a mask on me and it makes being understood pretty difficult. If I raise my voice to be heard it seems to come off angry or mean. I guess I’ll just not going to talk out loud till this clears up.

Sleep is something that came easy before. Not now. I’ve cleared my room of blue light, don’t watch tv in bed, don’t check my phone if I wake up (until I know I’m “up”), etc. I’ve tried everything from herbal teas to Valium. It’s getting better – last night I had 6-½ hours, that could almost be considered normal!

Food is an easy one, and a tough one. Easy because not much is appealing at this time. Water, bone broth, simple and not too spicy soups. Fruit and juice. Breakfast and lunch are more manageable than dinner. That’s the easy part. Difficulty is — I like to cook, I like to go out to eat and enjoy good food from caviar to escargot to steak tartar to salmon or a perfectly cooked rib eye. None of it sounds appealing at the moment, which sucks. My fridge and freezer are well stocked, thanks Lizzie, Karyn, Nancy and Melissa!

The moral of this story: Write it down. Say it out loud. As I listen to myself I realize it’s all small shit. As I said almost five years ago during my first cancer battle — “my life is different, but at least it’s life”. None of the above seems like it’s too high of a price to pay to stick around for a while longer.

Thanks for caring, and for listening. And for helping me see things more clearly.

Almost Moving to Maintenance

So yesterday was sort of a big day in my prescribed plan. It was treatment #4 (or 6). After treatment #4 I move to a maintenance plan with only two of the three drugs I’ve been getting — Pemetrex and Pembrolizumab aka Keytruda. The Carboplatin and the Dexamethasone is done, and (hopefully) it’s accompanying insomnia will start to ease up. It was an uneventful day, good news being that Dr. Namakydoust says that the excessive runny nose and mucousy cough (all clear) is my tumors breaking up. If that’s true there is a lot of that going on. I know it makes Bryan nervous, and it can be very uncomfortable when I’m around strangers. I usually explain my situation to anyone I’m with for any length of time. I’m not sure which makes people feel worse – worrying I’m spreading some sort of virus or I have cancer.

Speaking of other people — I’m keeping my circle of contact smaller and smaller. Immunity is still down and I don’t want any more issues. I’ve already noticed that I do have some breathing issues and minor exertion can mean I need to stop to catch my breath. (More on close contact with random strangers later).

Let me try to finish up with the “facts” of the day. We’ve added another drug to my regimen of treating side effects — Protonix for the gerd I’ve developed. All I keep thinking about is getting off all this stuff one day soon! As I mentioned in an earlier post, radiation starts on December 16 and the 15 rounds ends on January 7th. The maintenance treatment will continue every three weeks, but the doctor said I would be too “toxic” if we continued during radiation so we are on hold until January 13. My next PET scan is February 1 and my next MRI is February 21.

I’ve had quite a few funny encounters with random strangers on the rare occasions I’ve done in-person shopping, usually first thing in the morning. I had to buy a new MacBook and it’s just not something I wanted to do virtually. I’ve splurged each of the three times I went to the Apple store in Freehold and got myself a (half sweet) peppermint mocha. The mall is depressingly empty, but at 10 am I appreciate that. So I get on the very short line with a mask on and keep my distance from the person in front of me. Another person walks over and looks at me and I said “yes, I’m behind the woman in front of me ( with some space). Se walks over and gets behind me. Very close. I walk over to the other side. She follows me, again — very close behind me. And a third time, at which point I look at her and she says “I’m just trying to figure out where you are standing. I responded “wherever there is some space”. Her mask-less self finally stays about 5 or so feet behind me. And I’m still more worried about the common cold, another flu or any one of the random viruses that I am highly susceptible to. I respect everyone’s choice to get the vaccine or not, and to wear a mask or not but I would ask for the same respect in return. Many of us are fighting battles that aren’t visible. In some ways it was easier when I was a bald and easily identifiable cancer warrior. I guess I will be ordering online if I do go back to Starbucks!

On a positive note, Bryan and I have always talked about visiting Mohonk Mountain House in New Paltz. We finally decided it was time. We are heading up there on Sunday, it will be the perfect relaxing getaway before starting radiation.