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Pain and surviving cancer, some musings

It has been about a year since my chemotherapy started, since I heard the diagnosis that there was a 50% chance that cancerous cells had escaped my tumor and were in my bloodstream and/or lymphatic system. If I knew then what I know now (hah! hindsight is wonderful) that the chemo would give me pain and numbness quite possibly for the rest of my life, would I have made the decision to go ahead with it so easily? Should I have been more aggressive when I got the early symptoms of CIPN (chemo-induced peripheral neuropathy) so that they might have slowed the treatment even more? I wish I had done more research into the specific chemo drugs before agreeing because one almost always gives CIPN although my doctor minimized that during his discussion of side effects.

Bottom line, it sucks having painful and numb hands and feet. I am building a tolerance to the ONLY drug that works on this kind of pain and NOTHING works on the numbness. Sometimes it doesn’t seem worth it.

Just ranting. Nothing to see here folks. Hugs to you, sweetie.

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Bummer…

Harvey has had this growth on his cheek. It was removed some years ago by his doctor–biopsy negative. The growth returned and he went back to his doctor–removed; biopsy negative. But it grew back quite fast this time and I insisted he go to a dermatologist. When they removed it, this time the biopsy is positive.

So Harvey has a spot of skin cancer. Bummer.

Fortunately, at least from what I’ve read, he should have a good outcome following some very careful surgery to ensure that all the malignant cells are removed. I sure hope so. I admit that I’m probably extra worried since that was what was supposed to happen with my oncological surgery almost a year ago.

At least with this kind of cancer (squamous cell carcinoma) there is almost no chance of invasion of the lymphatic system.

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My Cancer Journey: I’m Free, I’m Free!!!

Last week I got an important CT scan of my chest, abdomen, and pelvis. It went well, even placement of the IV, except I may never have a mocha again after drinking 2 large bottles of mocha flavored contrast.

Fast forward to my doctor visit this past Tuesday. First, Harvey and I got lost finding the office resulting in my longest walk in a while. Numbness in my feet from the peripheral neuropathy and lack of lung function from the pulmonary hypertension combine to make walking pretty darn hard for me.

When we got there (early) we found that the doctor was running late. We practically held our breaths until I was called back by Jennifer, Dr. Veljovic’s trusty nurse. Then they discovered they’d lost my CT scan results! Had to get a copy faxed from the hospital.

But finally we got the good news, there was nothing significant on the scan and my CA 125 blood test was in the normal range. Although I’ll have lots of followups in the next 5 years, the doctor called it a cure!

As a bonus, no radiation at this time. Woot!

The doctor also gave me a drug, gabapentin, which is working well on the peripheral neuropathy pain though not the tingling or the numbness. It’s quite a relief!

So, there you have it, the last big step in my journey. I’m cancer-free!!!

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My cancer journey: side effects

If all goes according to plan, I’m half way through my chemotherapy! Treatment 4 is next week. I will be so glad when this is done; I’m terribly tired of being terribly tired. Fatigue, exhaustion, and just weakness are some of my daily challenges it seems.

Possibly my worst on-going side effect is “peripheral neuropathy”–tingling, numb fingers and toes. It isn’t debilitating (though the toes are affecting my balance a bit) but it’s ALL THE TIME. Especially when I want to sleep; sometimes then I just want to cut my feet off (well, not really). I hope this one will clear up after chemo stops. Sometimes it doesn’t which is a real fear.

During chemo cycle 2 I wound up in the hospital because of low platelets (transfusion) and white blood cells (given shots to stimulate production). The hospitalization had one interesting learning, which is that I felt fine despite having what the doctor described as “no immune system at all.” So I can’t just decide to go out if it’s the wrong time in the cycle–I could still be at risk for catching something. Starting with this past treatment, the doctor has reduced my chemo dosage slightly which seems to have made a positive difference.

After two battles with simply horrible constipation, I’ve made Miralax part of my typical day. Surprisingly tasteless so you can mix it in anything. Mostly I drink plain water now, just one of my changes in tastes since starting chemo. Every cycle I have a few days when just every kind of food and beverage sounds awful and I can barely bring myself to eat. I’ve lost about 40 pounds since the first of this year–which is good in its way.

My best side effects news is the ones I’m not having, though. Not having nausea (because I have no stomach, maybe?) and not having pain. Your prayers and good thoughts are certainly part of that!

Well, that’s it for now. Friday a blood draw, seeing my oncologist on Tuesday, chemo Wednesday, and pulmonary hypertension day on Thursday. Sigh.

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My cancer journey: chemo cycle 2

Had chemo on Tuesday. Am so tired I can barely type this. Blood not clotting as well as usual, either. About all I’ve found I can manage is listen to audiobooks.

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My cancer journey: chemo cycle 1 and stuff

Well, here I am 2 weeks after my first chemo treatment. The prediction that my hair would fall out was true. Harvey and I cut it really short and even those scraps are getting pretty scraggly. My new scarf is cute–I need another one 😀

Things weren’t easy but they were bearable this time. The biggest deal was that the port area hurt a LOT. This involved making a little pocket under my skin, with 2 incisions and some major bruising.

Chemo was easy enough. It does take a while but they have internet and comfy chairs. Biggest problem was that the room was hot. I was feeling fine when I went home but that’s when the port area seriously started to hurt. So I took pain pills. And anti-nausea pills which gave me a serious headache, so I took the pain pills a bit longer. And the predicted happened: worst constipation of my life. We shall not go into details, but I spent a day in MISERY from it.

Next time we start the laxative with the pills. Also the port is quite healed now so that won’t be an issue.

Turns out, only chemo nurses can do blood draws from a port so I’ve had several assaults on my arms lately. Not even the best of them managed with one stick and one woman needed five! I need at least 2 draws per chemo and I hope my veins hold out.

The other health news is that we finally went to the Pulmonary Hypertension Clinic, the only specialists in the area. They’re with the University of Washington. Everyone was very nice, listened well, got in 3 different tests while I was there including the “6 minute walk” in which I proved I can’t walk 6 minutes without resting.

General conclusion is that yes, I do have it, in a more severe way than my symptoms would indicate. I will be having some more tests to try to pinpoint the cause, baseline my status, and see how I might respond to various medications.

Because this is a very rare condition, everything that treats it is new and expensive. (At least there are treatments–15 years ago there were not.) Example, one of the treatments is mega-doses of (I’m not kidding) Viagra. 4 pills, 4 times a day…adds up to something like $20,000/year and that’s the cheap treatment. Yikes.

So, more to learn in about a month. I’m so glad that we finally got everything in order to go there! One benefit is that I’ll now be getting a permanent handicapped parking pass. Currently, Harvey always drops me off as close as possible–this will help both of us.

Chemo 2 on Tuesday! TTFN

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My cancer journey — Pre-chemo information

I’m about 2 months post surgery and am feeling just fine—no pain at all. No more fatigue than before this all started. The only symptom of cancer that I am having is a slow but steady weight loss despite not changing my eating and exercising habits at all. Maybe that’s not a symptom–maybe it’s all good!

Harvey and I met with my oncologist, Dr. Veljovich, yesterday going over the reasons for the decision to recommend chemo as well as the initial steps.

My chemo will start Tuesday, August 14 (happy birthday, Mom-in-heaven). I’ll be getting a port put in on Monday. This is good because my veins could no way support all the stabs they’d have to get. Harvey and I will also be attending a “Chemo Teach” session with a PA to really get into how the chemo works and all the possible side effects, etc. That’s Friday.

I’ll be getting a chemo treatment every 3 weeks and six total treatments are planned. At some point I will also get 3 radiation treatments. There are two side effects that everyone gets, according to my doctor. I will lose my hair (the badge of courage, I guess) and my bone marrow will be compromised (it will recover). That means anemia, clotting disorder, and reduced immune system. Other things may happen.

We got some clarification on why the chemo was recommended. Apparently, the presence of so many cancer cells in the lymphatic vessels is a very uncommon pathology finding. Sometimes there’s like one spot, but mine were all through all the vessels. So it is probable that I would still be getting chemo no matter what the lymph node findings might have been.

Final bit of health news, I will be seeing the only specialist in Pulmonary Hypertension in the area at the end of this month. Working the problems!

Love to you all and thanks for your support!

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