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.

13 Replies to “Stuff I’m Not Okay With”

  1. Moira, you do tell it like it is. It’s your reality right now & you have accepted it without judgement. You are a realist & that is one of your
    Many valuable assets, it adds to your strengths. You pack quite a punch in this edition & then soften it with your ending, if that makes sense. None of it makes sense though, no one should have to go through your plight. While helping others, you are helping yourself. You are stronger than all of your treatments. You are beating this wicked cancer. You are Moira!
    Each time I pass your locker, I sigh & say a little prayer for you & yours. I still talk in the pool & can’t wait to see your smiling face, again, reminding me of why I am there.

  2. Moria, I am Italian by country of origin, and hugging, well, it’s everything. Sending you 8 virtual hugs 🤗 a day! That’s how many my dad always said we need! Your journey, your fight is an inspiration. You are an endurance warrior! Fu*k Cancer! L

  3. Sending virtual hugs. I feel blessed to have been able to catch up with you on the phone last week. Here any time to listen. You’re strong my friend.

  4. keep pushing, I have been there. I was taking a ton of meds and told the doctor I can’t take all of them in one day. massive doses of Prednizone was making me sick.

  5. Moira, Keeping you in prayer. It all sounds just sickening and I pray you will be back to your old self very soon and that your treatments will be successful. I’ve never met you but have followed you over the years, feeling a connection since we are the same age, born in Brooklyn, and if I remember correctly we had a connection to a parish in NY when we were little. You inspired me to focus on my physical fitness with the hope that my mental and emotional health would also improve after a painful divorce. Thank you for inspiring so many. I am a nurse and feel sad that so many patients are suffering. May your health be restored and all your dreams come true.
    Merry Christmas to you and your family.

  6. Thinking about you, keeping you in my thoughts and prayers ! I’m hoping that the harder days will be behind you soon and life gets back to or as close to “normal” as possible. You are amazing !

  7. If love and prayers will bring you through all of this you will be here for a long long time! You have so many people thinking and praying for you. Love you! I know it is hard but keep the faith!!

  8. ((((Hugs)))). If there’s anything I can do please just call and when you feel better let’s hang. I’ll call Pfeiffer! Xo

    You. Are. Strong. You. Are. Powerful.

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