Life Defined by Cancer

For the last week or so, I have woken up during the night with hiccups. I have no idea why. Last night was particularly bad, though, as I woke up every hour or so. But during one of those ‘awake’ moments, I had a realization; for the past four months, my life has been defined by my cancer.

Most of my waking moments have been spent dealing with things having to do with cancer; insurance companies, appointments, chemotherapy, chemo side effects, and on and on. Fatigue and other side effects have severely curtailed the activities I thought I would be enjoying in my retirement. I spend time reading blogs of other cancer patients; reading research papers; looking for more promising research. And I have decided that I’m sick of allowing cancer to define my life. I feel as if I’m waking up from a dazed existence that began with those fateful words, ‘you have cancer’, and have continued ever since. No more. I’m taking back my life – I should have done this a while ago but needed the realization of what’s happening to be able to redefine myself.

Cancer isn’t disappearing from my life any time soon. It will always be there in some form, even when I show no evidence of disease. Cancer is insidious and can reappear at any time, or spread somewhere else. What matters now is that I intend to enjoy life more and put cancer on the back burner for now. I will deal with it as I have to, but I no longer want it to define me; I will define it. I have to make some allowances for fatigue, chemo brain, nausea, etc., but I will no longer make them my focus. They are there and will be there for a while. My focus is now on me and my life and my activities. I’m outlining my days based on what I wanted to do for my retirement regardless of what else is going on. I will write. I will go out and take pictures. I will play with our dogs. I will spend time with my partner. I will work in the yard and enjoy my flowers – when I have them. I will define my own life.

 

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CT Scan

We spent about 4 hours at the doctor’s office today for first blood work, then a CT scan, then a meeting with my oncologist. The scan looks good. There was no change in the size of the  primary tumor in my left lung, but he thought it might be scar tissue given that the secondary tumors, the largest of which is in the liver, did shrink. And, my left upper lobe has re-inflated; it had shown as collapsed on the previous scans.

So what does this mean? It means I begin maintenance therapy tomorrow with Pemetrexed. This had been part of my first chemo series along with Cisplatin, but my side effects were so severe that they switched me to Carboplatin and Paclitaxel. I have had a total of 4 rounds of chemo. My oncologist seems quite optimistic that the Pemetrexed will keep the tumors in check and may even reduce them further. And he thinks that the  severe side effects were from the Cisplatin and not from the Pemetrexed. The down side is that I will be back on higher doses of Dexamethasone, which makes me jittery and unable to sleep. But if I only have to take it for 3 days out of every 21, I’m not going to complain!

I will have another PET/CT scan in 6-9 weeks, depending on the CEA levels (tumor markers). If the CEA continues to go down or stays the same, we will wait 9 weeks; but if the CEA starts going up, we will do it sooner. Here’s hoping for 9 weeks!

Aches and Pains

I’m not sure how to describe the latest round of chemo side effects, but I’ll try. I feel as if my nerve endings are raw and are jumping all over my body. The excruciating twinges last a mere second, but they are very uncomfortable; no, dammit, they hurt! The whole time I’m awake, I never know where they will hit next. It could be my hips, my head, my abdomen, and they keep moving. If you’ve ever been pregnant and felt a baby kicking your belly from the inside, that’s what this feels like but magnified a thousand times. If you haven’t been pregnant, then imagine the worst case of food poisoning or GI upset you’ve had, and imagine that pain all over your body but constantly moving from one place to the next. Sometimes, it hits muscles so I have to stop whatever I’m doing because the muscles don’t work for that millisecond.

The nausea is back, too. It doesn’t seem to matter what I eat or drink. It’s slight, but ever-present, and fortunately controlled with drugs. I try to use other remedies, such as ginger, instead of the drugs, but sometimes the nausea is so bad I have to take the heavy-duty drug.

The good side is that I should only have two more rounds of chemo; on this round there’s one done and two to go. Then a week off, and another round of three weekly treatments. Then another CT scan and more blood work to check tumor markers. If all goes well, I’ll be on maintenance chemo after that. This will involve a lower does of one of the original drugs, and only once every three weeks. Target date for the end of the destructive chemo is Feb 4th, which is my birthday! What a great birthday present that will be!!

I’m still losing my hair – there are bald patches on my head now, small, but still bald patches. The worst part of losing hair is my hair is so fine it gets up my nose, and in my eyes, and drives me crazy! I have to shake out my pillow every time I get up to get rid of the hair. I asked Jenna to come over today after she’s done with work to shave my head – I’m tired of waiting for it all to fall out. The good part about losing my hair is I had two thick wiry eyebrow hairs, one black, one white, that I had to keep plucking; I haven’t seen either of them in a long time, so maybe they’re not coming back! I’ve heard that the color and texture of hair can be different when it starts growing back after chemo, so that should be interesting.

If nothing else, this journey is teaching me patience, fortitude, and to laugh and not take myself too seriously. 🙂

Chemotherapy

Chemotherapy has some weird side effects. It’s not just the expected ones like GI upset and hair loss, but things like a change in the taste buds and vision changes. I’ve noticed that things don’t taste quite the same as they used to. I love ginger beer, the strong kind, but the last time I tried to drink some, it tasted awful! Other things don’t taste quite that bad but just different and a little off. Except chocolate. Chocolate still tastes fine – if it tasted bad, I don’t know what I would do!

And the vision changes are troublesome because my contact lenses don’t quite work any more. My glasses are okay, but they’re bifocal so sitting at the computer staring at the screen through the lower part gives me a crick in my neck. I bought my current glasses at Costco a few months ago, so yesterday, I took them in to see if they could loosen the side pieces as they were so tight they were cutting grooves into my head. The woman at the optometry counter not only loosened the side pieces, but also fixed them so that they sit higher on my nose if that’s where I place them, and then I can see the computer screen comfortably without having to put my head up and back hurting my neck and shoulders. So that problem is solved.

Now if my GI tract would just calm down a bit more, I would feel so much better!

Frustration

I’m tired of being tired and not feeling well. Yesterday was particularly bad. I couldn’t seem to stay awake very long, and I felt like crap. I woke in the middle of the night with cramps and nausea. Taking one of my anti-nausea pills helped with the nausea but not with the cramps. I felt as if I had eaten ground glass and it was eating me from the inside out.

Chemotherapy attacks rapidly multiplying cells, which include not only the cancer cells, but hair, nails, and mucus membrane, which is what lines the gastro-intestinal tract. That’s why nausea, diarrhea, vomiting, and hair loss are often side effects of chemotherapy. My hair and nails are fine at the moment, but my GI tract isn’t. I have three different anti-nausea pills; one for mild, one for moderate, and one for severe.

The side effects are cumulative, and this is the third week of three for this drug combination. I’ve noticed that Wednesday into Thursday are when the side effects are at their worst. And yesterday was the worst it has been so far; not counting the first round of the combination that knocked me on my butt. I won’t be getting chemo next week but will start another 3-week course on Monday the 23rd after more blood work and another CT scan.

Today, more hair came out. It seems to be a day of hair coming out and then nothing for a week or so. I’m thinking my good shampoo and conditioner might have something to do with my hair still being there. Who knows? But at least today my GI tract has calmed down a bit, and I stayed awake all day.

Next week should be better.