Thursday, June 3, 2010

Progress Report

Another day, another cancer story. Actually, just an update on the chemo, and the arm thingy and other cheery stuff....

I've been doing so very well overall that I feel guilty whimpering. But since this is the tale of the road of survival, I guess I should report progress, good and bad!

I'm now half way thru the basic chemo regime - six treatments every three weeks. The Herceptin treatment will continue every three weeks for the balance of a year. Since the Herceptin is not considered chemo per se, the side effects are supposed to be less severe. I've been incredibly lucky in my body's response to all this poison (yeah, I'm back to calling it poison, not joy juice!) - perhaps because I'm a warrior, perhaps because I have all those crazy warriors and great friends watching over me, perhaps because I was in good health overall when it all started - whatever, after that first week when we discovered all the things that would hit me, and took counter-measures, I've only had a few really bad days when I feel like I've been run over by a truck immediately following each treatment, and have been in pretty good shape the rest of the time.

Except of course for the almost constant runs, kept fairly under control with Imodium. And the nasty mouth and tongue, that always feels like I'm walking in bare feet on hot gravel, and tastes almost that good! But the sores are kept sort of sometimes under control with the Miracle Magic Mouthwash. And I'm pretty tired, all the time. But it's summer here, and now is truly getting hot, so a mid-day siesta under the a/c works just fine!!

Sure, I have no hair, but that was partly my doing, as you'll recall from all the silly pictures. Amazingly, it didn't all fall out. I still have stubble, a lot of stubble, which I've been shaving off weekly. And I see no signs of that stubble falling out. I still have hair on my arms and legs. So maybe it isn't all going to fall out. I've decided to let the stubble grow for a couple weeks to see how much hair is actually there - I might let it grow in! Although, I must say, having no hair on my head is certainly a whole lot easier to care for!

And then there is my skin. I've been a serious sun worshiper all my life. And have paid for it. I've had over 30 skin cancers biopsied and sliced off in the last several years. And I have hundreds of those nasty little bumpy, scaly actinic keratoses, pre-cancers, all over my arms and legs and back and chest. They're starting to dry up and fall off! Leaving smooth skin behind!! Maybe chemo does have some positives!!!

The arm, of course, is another story. I was tolerating this 'intensive' compression bandage OK while I had someone here to help me with everything. But Suzie abandoned me yesterday and returned to Paradise. The last 24 hours have been a trial. I don't know how they expect single people to survive with one of these monsters attached to their 'working' arm. I can't get it wet - fine, but I can't find a rubber glove big enough to go over the damned thing, so I can't do any cooking or cleaning up. I tried taking a shower this morning with the trash bag cover that Sooz created for me, but there is no way I can tape it on securely by myself. So bathing is out. Obviously the frivolous things, like make-up or earrings, or clothes that button, zip or tie, or brushing my little dog, or my teeth competently, or even eating without spilling all over myself or the floor, are out. That means today, when I see the therapist again for a massage and re-bandage, I'm going to tell her I won't get it re-bandaged again until (maybe) my next dear friend/care giver arrives in a week or so. That ought to make her happy - she thinks less of me than I do of her!!

But - all in all - I am doing way waaaaaaaaaaaay better than I anticipated!

And, BTW, I have no idea why some of these postings bounce from one size print font to the another, and have found no way of fixing it when it does. So, my apologies!

Army of Women

Received this email yesterday from The Army of Women. If you or someone you know might be interested, or qualify, please consider investigating it, share it or participate!

What's the study about?

The purpose of this study is to evaluate the effectiveness of an online workbook for women who were diagnosed with an early stage breast cancer and who are experiencing increased stress related to their diagnosis. The 10-week web-based program, called "Coping with Cancer," teaches women stress management and relaxation skills. If they choose, women can also take part in an online support group.

What's involved?

If you agree to participate in the Coping with Breast Cancer Study, you will first be contacted by phone and asked to answer some questions about your breast cancer diagnosis and your stress levels. If the researcher determines you are eligible, and if you decide to join the study, you will then be asked to complete a series of questionnaires on a computer with internet access.

Next, you will be randomly assigned (like the flip of a coin) to one of two groups.
Group A:
• Will use the Coping with Cancer online workbook for 10 weeks, completing one chapter each week.
• Will receive a small mp3 player in the mail that is pre-loaded with the program's relaxation exercises.
• Will complete a Weekly Participant Form.
• Will receive six phone calls during which they will be asked questions about their stress levels. During the final phone call, they will be asked to give feedback on the program.
* Will be followed for another 10 weeks and will be able to access the Coping with Cancer program during this time.

Group B:
• Will receive five phone calls and will be asked questions about their stress levels during the first 10 weeks.
• Will not have access to the online workbook until Week 11.
• Will receive a small mp3 player in the mail that is pre-loaded with the program's relaxation exercises at Week 11.
• Will receive a final phone call at the end of the study to give feedback on the program.

All participants in Groups A and B will be asked to fill out online questionnaires 11 weeks after the start of the study and at the end of the study (20 weeks).

The researchers need to enroll up to 130 women in this study.

Who is conducting the study?

Kelly Carpenter, PhD, at Talaria, Inc., in Seattle, WA


United States

Who can participate?

You can join the Coping with Breast Cancer Study if you match ALL of these MAIN categories:

• You are a woman who has been diagnosed with breast cancer within the past 18 months.

• You have been diagnosed with stage 0, I, II, or III non-metastatic breast cancer

• Your cancer diagnosis is NOT a recurrence

• You are 18 years of age or older

• You have access to a computer with audio capabilities and internet access for at least 1.5-2 hours per week

• You have access to a telephone

• You have an active e-mail account

• You are able to read, write, and speak English

• You live in the United States

The researcher may ask you additional questions to be sure that this study is a right fit for you.


Yes, Sign Me Up


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