October 11, 2020

I’m back. So much has happened.

I’m writing again because I have found myself looking for hope about long-term survival and thinking that maybe – if all goes well – my blog can give hope to someone in the future or at least help inform them as they go through treatment. I also have a little more perspective which makes writing about this journey easier.

So here I am, in the midst of a beautiful Fall, two months since I last wrote. The leaves are turning early this year which I read is because the trees are stressed. It’s sad and beautiful.

Here’s a quick rundown: As I last wrote, I was in and out of the ER during my first two chemo sessions – very, very sick. Then, my doctor modified my treatment regimen, removing one drug and adding another anti-nausea medication. It worked. No more ER visits for me. My tumor marker has fallen with every session. At my first session, it was over 19. At my sixth (most recent) session, it was just a little over 1. The latest CT scan shows that my primary tumor has shrunk in size (though it is still large and inoperable – “bulky” as the surgeon described it) as have the tumors in my liver and lungs. I no longer have any pain whatsoever. My blood labs are close to perfect – you wouldn’t know I have cancer looking at them.

I have had my heart checked with imaging and a 12-lead EKG, a pre-surgery COVID test, and surgery to replace the stent in my ureter. All procedures/tests went well. The chemo side effects have gotten worse – and change every session – but that’s just the way it is (nausea, neuropathy, sleeplessness when taking the post-chemo steroid, acid reflux, trouble swallowing, sometimes shortness of breath, stiff neck, brutally painful post-chemo constipation that makes my stoma swell up and my colostomy appliance no longer fit, etc.).

I have spent the past two months eating around-the-clock – everything in site – blueberry pancakes with pecans and maple syrup every night post-dinner – and have gained back all the weight I lost – almost 20 lbs! My booty is back!!!

I like to bake and eat what I bake so I’ve been making all kinds of treats – ginger/oatmeal scones, currant scones, biscotti, pumpkin spice muffins – trying to improve my pie crust now. When I started to gain back the weight, I had to eat very, very heavily which was very expensive. I don’t remember ever spending so much money on food. I was eating through mild nausea (unpleasant) but usually was ravenous. I would buy enough for a week and eat it in about two days – maybe three. I ate pizza, lots of spaghetti, and Thai food. I ate huge quantities of fruit because fruit gave me juice/liquids. I’m eating more normally now – heavy on protein, potatoes, greens, squash.

I have worked (work-work) through my illness – necessary and helps me feel grounded – and have found a wonderful little coffee shop that serves up (outside) the best coffee and scones making the three hour one-way drive to the hospital for treatment fun.

The toughest thing I have had to deal with personally is not the diagnosis or the treatment but the prognosis. Confronting my mortality at this stage of my life (I’m not old) has been very difficult. I worry about my sweet cat and think about my past and the future I may or may not have. I have been told that it is unlikely the primary tumor can be surgically removed; there are too many spots in my lungs to be removed; the cancer will grow back even if surgically removed; and eventually the chemo will stop working and I will die. Then I read about people who have survived Stage 4 colon cancer. So I don’t get it … All I can say is I have to stop thinking about it and just be confident that I will be among the 14% who survive more than five years. And then 10.

The stent surgery went well. The anesthesiologist wanted to give me general anesthesia but I asked my surgeon for a sedative instead which he approved. I have to have my stent replaced several times a year and did not want to go under general anesthesia that frequently. I have read that it can harm the brain and is more dangerous than a sedative. I was also told by a doctor that my procedure would require the same kind of sedative as a colonoscopy. So why do more when less is enough? No problems except one: My ureter collapsed when the old stent was removed and would not allow any liquid to pass. The tumor, even though it has shrunk, is pushing on the ureter and causing it to bend.

So the bad news? I had a severe allergic reaction to chemo during my last (6th) session. When the chemo started to drip, I was sitting in the chemo chair reading the newspaper on my laptop. A few minutes later, I felt a strange, prickly sensation in my tongue. I felt ridiculous complaining about it but told the nurse. Then it quickly spread to my teeth/gums, then my hands, then between my legs. [I knew this was bad because, during my fifth chemo session, the nurse had me on one drug and, when it was done, switched me to the chemo drug. When she did, I immediately felt a terrible sensation between my legs and told her so. She stopped the drug and let me rest for a few minutes. If I understood her correctly, the first drug was not entirely out of the tube going into my chest when the chemo drug was started which caused the bad reaction.]

Next thing I knew, I was slumped over, eyes closed. When I opened my eyes, I found five nurses around my chair. I don’t know what they looked like or what they said. Then I heard one nurse say that my blood pressure was falling. My skin was clammy and I had pain in my abdomen. I muttered “It happened so fast, it was so fast.” The nurse felt the skin on my arm and asked me if I could breathe.Then I heard her say that I needed Benadryl and an EPI shot. I did not understand what was happening or why I might need an EPI shot so, without opening my eyes, I said “no” . She told me it was going to get much worse so I said “OK.” She gave me the EPI shot and it made no difference. She felt my skin again which was no longer clammy. I remained slumped, eyes closed.

The nurse then asked if I was feeling better and I told her I wasn’t. I asked if the chemo treatment was going to start again because I’m not supposed to miss a week. She said that I would not be given the drug again that afternoon and that the treatment would have to change – be given more slowly. I closed my eyes and, when I reopened them, almost two hours had passed even though it felt like only 30 minutes. I had not been sleeping. I don’t know what happened. I stayed in the hospital another two hours during which time I was given fluids and hooked up to my take-home chemo pump. Then, I drove three hours home.

The next day, my doctor’s office contacted me to see how I was doing. I felt good/energetic (though the next day I felt terrible and couldn’t get out of bed).

Right now, I don’t know what’s going to happen with my treatment. The chemo is working so I want to stay on it. I don’t want any new drugs – the doctor needs to save those for when this drug stops working. I assume that I will get the same drug administered more slowly and, hopefully, my body will not react. Fingers crossed.

Stay tuned.

Love, Molly

2 thoughts on “October 11, 2020

  1. I’m so glad things are going smoother for you. Please please join Colontown. There are so many people who have had terrible prognosis, but learned who to see for a second opinion and got in touch with the best in the country – and then got to cancer free. It can be such an amazing hope and resource to you. http://www.Colontown.org. I wish I had found it before I had finished treatment. It would have been a great help to me.

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    1. Thank you so much for your encouragement and advice, Jacqueline. The first set of doctors I had in my old state (top hospital) said that my tumor was inoperable (and might remain so) and now I’m seeing a wonderful doctor in my new state who says the same thing and is really paying attention to me. But I always listen and consider and am open – so your thoughts are very much welcome!

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