Tuesday, March 20, 2012
Finally, in desperation, I started taking Glucosamine condroitin....I knew that some people swore by it and several of my friends who had aging dogs said that helped their arthritis. I bought some Osteo-biflex (it happened to be on sale) and I've been absolutely amazed....it has really made a difference...at least for now.
I'm not saying I'm going running with my daughter tomorrow...but hey, not doddering around when I first get out of bed is great!
Sunday, March 18, 2012
It was such a relief to me to find out that the fact that I often tripped over stuff was a direct result of the neuropathy. I know this sounds odd, but I couldn't figure out why I tripped over the rolling stool in the library aisle. I saw it. I knew it was there, and it was like it jumped in front of my foot...I had no idea my foot was anywhere near the stool....and this is a result of the neuropathy, not that I had suddenly become the biggest klutz in the world.
So, check this out....and look ALL around it. It is one way cool site. Rachell's website is called luponcancer.com (numeral 1, not an "L"). It's also great because it discusses a number of different types of cancer, and things just in general. It has sections for blood cancers, childhood cancers, breast, ovarian, colorectal, lung and prostate cancers as well as melanoma. There's fun stuff....free stuff for cancer patients....and just good hard information. I hope you enjoy it!
Sunday, March 11, 2012
Yesterday, I went to Dayton to get a Polarity/Reiki session with Lisa Nelson. Lisa, and a couple other practitioners, provide sessions free or at reduced rates to members of the Noble Sister, the women's cancer support group I joined last year.
While there isn't a lot of studies to indicate whether or not Reiki (sometimes referred to as "healing touch") really "heals" someone with cancer, it certainly does work for stress reduction and relaxation....and it feels really good. I was fortunate to get Reiki done for me several times from friends in Connecticut and was grateful to find places here where I could get it as well. Lisa combines Reiki and polarity therapy and so far, I've been three times, I've really felt it was wonderful. It certainly isn't harming and I believe it is doing me a lot of good.
Sometimes, though, I'm a little saddened to know that there are lots of people who could benefit from this but they are not in areas which have practitioners or they can't afford it.
If you do have an opportunity to give it a try, I really suggest that you do so.
Saturday, March 10, 2012
Not too long ago, a metastatic breast cancer survivor posted on the Advanced Breast Cancer Support Community that she was going to refuse chemo because "it only worked for a couple of years and if you're stage IV you're going to die from it anyway." well...those weren't quite her words, but that was the gist of it....Her fear was coming out.
Obviously, I disagree with that statement as I managed to go for 14 years with no evidence of disease (affectionately called "NED." ) before getting back in to the trenches. I have to admit, although I wouldn't CHOOSE to have chemo...that is, if I were disease free, I wouldn't go to my doctor and say "Hey, I think I'd like to try chemotherapy today.....my life would just not be complete without it!" it is doable. Not fun, but do-able. I admit, I was pretty worn out with the Abraxane...and my hands and feet are still very very numb, a maddening fact that it only worked while I was on it...but it didn't have any lasting effects....the thought of going back on chemo within two months of stopping Abraxane was more than I wanted to wrap my brain around....but since I've had a little more time, I feel that I would be ready to go back on if I needed to.
I find it odd and a bit disquieting that for many people who are diagnosed with cancer, chemotherapy scares them more than cancer does. Pretty horrific thought isn't it? The "cure" (and I use that loosely because there really isn't a cure) viewed as being worse than the disease.
Misconceptions about chemo abound.....not everyone has the same side effects....some people find it very easy whereas others may have a tough time with the same drug.
However, sometimes it works, works well, and works for a long time. I'm living proof of that. Don't get me wrong...it can always come back...even if you've had a cancer which was detected early....at least for breast cancer, despite what all the happy-dappy GE advertisements, ACS and Susan G. Komen ads want you to think. Yes...early detection can save lives and can prolong the period in which you are cancer free.....but what about us who have had it come back...and spread?
Ooops....no surprise, I digress. Even so, there are those people who manage to make it out for a long time....people DO survive. Why can't it be you? Why can't it be me? I can tell you though, if you don't fight and if you don't try, your chances of making it are lessened.
Deciding to refuse chemo-therapies, or any other therapy is a personal decision, but it is one which you need to collect a lot of information about. It is one that you need to thoroughly discuss with your oncologist...and maybe with a second opinion as well.
I might not like it....I might not like the side effects, but I am going to take every little chance I have until I just cannot do it anymore.
Saturday, March 3, 2012
Boy, do I know how that feels. I find that you really have to fight for it, and sometimes you will alienate those who are supposedly looking after you. I am particularly confused at times when something happens and I can't tell if it is a side effect or just something which has come my way....so I often opt to visit the my general practitioner rather than driving down to my oncologist who is farther away.
You really have to keep the whole person in focus in front of the doctor's eyes. I think this is a major problem in today's medicine. We aren't treating the person as a whole, we aren't having all the specialists working well together and the person who loses is the patient. Annoying.
We have the same problem here as in Europe. Go figure.
However, I did get a little charge out of visiting my GP on Friday for my back pain. He used his reflect hammer to test the neural response on both of my knees....of course, nothing moved. The nerves are very damaged. I know that. I've been trying to tell people that...but when the doctor sees the extent of the damage himself....well, I get a little chuckle at seeing his eyebrows raise.
Thursday, March 1, 2012
It was good to see frank discussions about this....mostly about us feeling badly for our husbands that we didn't have any sexual drive, found that sex was painful, and that they were just in this position at all....having a wife who wasn't in good health. A number of us were quite young...even though I'm not young now, I was when I started out on this journey.
One woman said that "sex doesn't have to be penetration." I commented that I "got" that, but because of the lack of estrogen from long term removal of my ovaries, I'm not even really interested...and I feel that I'm sort of cheating my husband.....
Her comment back a little bit later was that we were being selfish and filled with self-pity. Bull-pucky. That's not it at all. I am wistful that things aren't different, and I do feel that my husband has gotten the short end of the stick. I really feel that she doesn't understand....and she may not have the same issues...there ARE people on that site which are stage III, or haven't had their ovaries removed or whatever....
I also have been struggling with getting people to understand what a stage IV diagnosis means....and that while I have hair, it doesn't mean that I am not fighting cancer. Trying to get them to understand that we are more inclined than the average patient to feel like "the other shoe is about to drop." I went to the A Wear Affair, a fund raiser for Noble Circle in Dayton which included a fashion show....as they said the names and the number of years they had "thrived" with cancer....I must admit to feeling a bit jaded as people clapped for people who had had lesser diagnosis or shorter years out....and knowing that there were very few people in the room who really understood and maybe felt the same as I....fortunately, I was sitting with another MBCer.... ah well.....yes, I guess on some days I do feel a little jealous....maybe I'm just getting tired of fighting the battle.
And then there is the desire to get somewhere back on even keel. Wondering if you'll be able to do it...trying to find the "new normal." Praying that the drugs which are working continue to work and maybe that the pain would go away.
And yah....Adinfinitum sent me a sample of organic lubricant called "Valera." I have to admit...I'm afraid to use it.....gotta get up the courage....years of pain makes it a little difficult to even think about.....