December 17, 2020

Good morning!

I’m starting my mornings early these days. I’ve been feeling good for the past few days – waking up around 4-4:30 a.m. – not tired at all – and starting my project by 5:00 a.m. Then I work until 6:00 p.m. when I call it quits for the day. I don’t talk about the specifics of the project because I don’t want to be distracted or encumbered by expectations (good or bad). I want to keep all my energy for the work itself.

After I got out of the hospital in June and then got the implant in July, Sweet Pea couldn’t climb on my chest anymore because I was all cut up. Recently, she has tried to get back on but then stopped herself. I figured out how to let her clamber back on without my getting hurt – I put a blanket on me and then I put one hand over the port and one hand over the stoma. I encouraged her to climb up and now she is back to relaxing on my chest every night. She has changed her routine a little bit – now she positions herself so her cheek is right next to my cheek. Before I got sick, she’d lie down with her head on my chest. She needs all the love, support and attention I can give her. She is affected when I’m sick.

Did I tell you that I’m now scheduled for my second scan? It’s happening on 12/29. I can’t wait. I want to know what’s going on inside …

I’m going to get a cup of coffee and a peanut butter cookie now – I made a batch of peanut butter cookies the other day because my jar of peanut butter was expiring in Jan 2021. I used only 1/2 the sugar called for in the recipe because, when you make the cookies yourself, it’s a little unsettling to dump so much sugar into the mixing bowl. I wasn’t worried about the change in texture (less spread, more crumbly is fine with me) – reducing the sugar is not like reducing the fat content which can make a baked item tough instead of tender and pretty much inedible. Anyway, the cookies turned out great – still sweet but not cloying and packed with vitamin rich peanut butter though I do miss that extra sugar kick.

I will check back in later today …

The other night, I was reading posts about cancer – I think it was the American Cancer Society website. The posts were – from what I read – uniformly upbeat. They talked about fighting the cancer, getting great results, linking a positive attitude to positive outcomes (like anyone can control the spread of cancer). Everyone was well-meaning but I could not relate. The focus seemed to me to be on the triumph of the individual over the disease. Like we’re all in our own private blockbuster movies where one good guy outwits and outfights all the bad guys and saves the day. I am sure many find such posts uplifting but I felt demoralized by those relentlessly upbeat missives as though one’s health issues can be overcome by sheer will. I wondered if I should adopt the posters’ ethos and, if I don’t, am I dooming myself? I stopped reading them.

I’m following the doctor’s orders; I have dealt with the chemo without complaint (I was taken off medications because of serious, adverse physical effects not because of complaints); I worked hard to gain back all the weight I lost plus an extra five pounds as a safety buffer (a total of twenty-five pounds gained in a couple of months which is ALOT); I am eating healthfully and sleeping; I work on work-work and my project all day unless I am too sick (which is not easy); and I try not to think about death (with varying degrees of success). Most importantly, I am focused on trying to achieve achievable goals in the near future and doing things that have meaning for me. That is my response to cancer.

OK. I need to go back to my project …

This afternoon I had a scheduled video conference with a registered nurse who works with my doctor. Basically, surgery is out because it won’t help and may hurt (“debilitating” was the word used) and when the cancer becomes chemo resistant, which appears to be inevitable, I’ll die. That pretty much wrecked my day. I’ve been told that before so I don’t know why it upset me but it did.

It’s nighttime now. I just opened Netflix – I like Ricky Gervais so I started to watch After Life and the first scene is of a woman with cancer who died and made a video of herself telling her left-behind partner how lovely he is and how to do daily chores/tasks! I immediately turned it off but thought – maybe I should make a video. Very upsetting.

Can you believe this?! What a lousy day.

OK. I need to perk up. To heck with all this! I’m sick of this. I need to watch some stand up comedy.

I want to go to sleep and wake up early, enjoy my toast and tea (that’s big for me), and get back to my project.

Sleep tight!

Love, Molly

3 thoughts on “December 17, 2020

  1. I spent time on the ACS boards when I was first diagnosed. But then I found Colontown and I never went back to posting on the ACS board. Seriously, join Colontown, figure out how to get a second opinion. Make sure you’re talking to the right surgeons. Get genetic testing of your tumors done to find out if you’re a candidate for targeted therapy. Everything I’ve learned, I learned from Colontown. I know many people who had what looked like hopeless situations get to surgery. Some even made it to NED. http://www.Colontown.org. You won’t be sorry you did it, I promise.

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    1. Hi Jacqueline – Thank you for your feedback re the surgery issue – very helpful. I got genetic testing and there is targeted therapy for my tumor. We’ll be exploring that option after my scan at the end of the month. I didn’t post on ACS – just looked around – I read a lot of posts in different places prior to diagnosis which took me in the wrong direction so I’m wary.

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      1. There are two things about Colontown that really set it apart. First is all the science people in who actually know what they’re talking about and can point you in good directions. The second is the “neighborhoods” or groups within Colontown. They have a group for whatever part of your journey you’re in. I’m in groups for women, stage iv, liver metastases, those diagnosed under 40, and one for people with stomas. They’re all amazing and very active. Chances are someone’s been where you are and can point you to a great doc to get a second opinion. My treatment was pretty straightforward, but I’ve seen second and even third opinions save lives. Colontown is much more matter of fact than the ACS board and there’s no quackery going on. It’s very welcoming and I wish I’d found it easier than I did.

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