My Breast Cancer Journal
June 25 - July 1
Sunday, June 25, 2000
Still having the spasms in my back and legs today. I didn't sleep much last night - too uncomfortable. I'm not finding anything about muscle spasms at the sites that are written for patients, but in the Physician's Desk Reference, it says that Cytoxan "...causes a marked and persistent inhibition of cholinesterase activity..." which would seem to me to be about affecting nerve conduction. But I'm so far away from my college physiology course, I can't make hide nor hair of whether this would explain the problems I'm having. All I know is that I'm miserable. Last time this lasted only a few hours. Now it's been about 28 hours already and still going strong. At least the queasiness has resolved.
posted by Karen Weber Sunday, June 25, 2000
Monday, June 26, 2000
Well, I got so goofy taking pain pills for the muscle spasms that I forgot to give myself my first shot of Neupogen yesterday. Sigh. So I gave it to myself this morning. It mostly gave me a headache, and since it supposedly only causes bone pain, I guess this explains all the boneheaded things I do! Actually, it did cause a slight discomfort in the hips and pelvis, but nothing too bad at all. That's good news. The other good news is that the spasms are finished now and I got a good night's sleep last night. So I think we're on the upward path now.
posted by Karen Weber Monday, June 26, 2000
Tuesday, June 27, 2000
The discomfort in the hips and pelvis got a little worse as the day went on - probably because I insisted on sitting up all day. My stubbornness really gets me into trouble, but that's OK, because it's my stubbornness that is going to get me through this. I do think it will be better to give the shots at night next time, though. You would think that being reclined in a La-Z-Boy would have taken some of the pressure off, but it really didn't seem to help at all. The good news is that I'm not as sore today - or as boneheaded.I slept in the waterbed last night, but had a hard time sleeping. My legs were too restless and there was some guy snoring on the other side of the bed. I tried to sleep on my back because sleeping on my side is starting to make the area around my port a little sore. I made myself lay on my back for over 3 hours and never could get to sleep. I need to find a solution to this sleeping dilemma. My massage therapist mentioned getting some wedges. I think I could sleep sort of partway on my side if I was supported correctly. The challenge will be finding how to do this. I have to say that when I first heard the diagnosis "breast cancer" it never occurred to me that this meant that sleep was going to become a big challenge. These are the kinds of things surgeons and oncologists don't tell you about. They are so focused on the cancer, they don't necessarily see the everyday life challenges this is going to entail. I was an insomniac before starting treatment. I had hoped that the fatigue from chemotherapy was going to help the insomnia. Oh well.
I meant to mention that I finished Bernie Siegel's book "How to Live Between Office Visits". I was a little leery about reading the final chapter - it was on how to die. I'm really not interested in learning how to die. Typical of Bernie, however, the chapter on how to die was really a chapter on how to live. It was the best chapter in the book. The key concept, at least for me on this reading, was that in order to die peacefully - and live joyfully - you must admit to and confront your fears. As frightening as this sounds, I believe it's very good advice. I'm going to start this process in my offline journal. If things start to look useful, I'll share them here.
posted by Karen Weber Tuesday, June 27, 2000
Wednesday, June 28, 2000
I meant to mention that the inspirational book I'm reading now is The Survivor Personality by Al Siebert. I've read six chapters, and so far I'm encouraged because I have so many of the survivor attributes he talks about. I don't know if I've always had them, or whether I developed them 6 years ago when I blew my knee out, but it's great to know that I've got them now. This book reads to me like an affirmation that I am a survivor and that the beasties will be conquered.I had some problems with the Neupogen injection this morning. I had a hard time waking up today, and maybe I was just fumbly-fingered (another reason for doing it at night), but I hit a blood vessel going into my belly fat. So I pulled out and tried doing it into my thigh. The liquid stung going in (it never did that before) and now the entire area is swollen - about 1 1/2" square. I'm going to hold off on tomorrow's shot until I can talk to Joanie, the onco nurse. She's only in on Tuesdays and Thursdays. I'd call and talk to the oncologist himself, except that he and I had an odd conversation yesterday in which he told me that chemotherapy doesn't cause muscle spasms. Of course, the gals in my support group have personal experience with this and they say it does and that their oncs give them pain meds for it. I'm not doubting my oncologist, but I'm just wondering if the nurse perhaps has more knowledge of the little things that patients experience. So I'll try her on this one.
If you've been putting off having a mammogram: Four Tips for a More Comfortable Mammogram Don't put it off any longer. Follow these tips and get it done!
Grilling Tips to decrease the risk of cancer. I hate to admit it because I love grilled meat, but it's a big risk factor for breast cancer.
posted by Karen Weber Wednesday, June 28, 2000
Thursday, June 29, 2000
As the day progressed yesterday and my brain started to wake up, the "swelling" at the injection site started to look more like I had just injected the medicine under the skin instead of into the fat. It all absorbed by about 6 pm. I called and talked to the nurse this morning, and she agreed with me that was the likely explanation. She also told me not to worry about it - that it would absorb from there just as well as from the fat layer. So I am staying on schedule with the injections. I had some misgivings about this morning, because I had that brain fog again, but it went just fine.I have an appointment with the surgeon today. I'm going to talk with him about the discomfort around the port area after I've slept on my side and ask whether I need to worry about it. And that is pretty much the big excitement for today.
A healthy dose of optimism can extend your life, according to the Mayo Clinic.
Back from the surgeon: he is happy at how all the incisions look, how my arm looks (no swelling), and how good my range of motion is. He says the soreness around the port isn't anything to worry about. I can't break or dislodge the port by sleeping on it. This is good news. He and his nurse got a good laugh out of my boneheaded joke, and enjoyed feeling my bald head. I go back again in 3 months. I'm a little tired from the trip, but still pretty good today.
posted by Karen Weber Thursday, June 29, 2000
Friday, June 30, 2000
Stress hormone linked to earlier death in women with breast cancer - (6/29/2000) - another reason to laugh, enjoy life, and do relaxing activities.
posted by Karen Weber Friday, June 30, 2000
Saturday, July 1, 2000
My energy level had been pretty good up until Wednesday when we had the fumble finger incident. Ever since then, I have felt like I just couldn't wake up, like I wasn't getting enough oxygen to my brain. All day. I spent all day yesterday yawning. Still yawning today. Of course, I didn't sleep much last night. Not sure why. I was very tired, but I just couldn't get comfortable. So now I'm really yawning. We are going up to my folks' house this weekend. Maybe I'll be able to sleep in the car.
posted by Karen Weber Saturday, July 1, 2000