Saturday, October 31, 2009

Go to the Doctor! It Might NOT be Cancer related

Yesterday, a friend of mine who was diagnosed with breast cancer only a year ago called me to ask if I had ever heard of radiation therapy making severe lumps on the bone. I told her that I had never heard of it doing that, and was really amazed in her case as she had a small lesion which wasn't very deep. She didn't even get chemotherapy.

While I strongly encourage people to join breast cancer support groups as quite often other survivors can allay fears or tell you what has been their experience, if you have any concerns or real questions, talk to your doctor. In this case, she needed to talk to a radiation oncologist and perhaps another doctor as well. Just because I hadn't heard of it doesn't mean that her lump wasn't caused by the radiation, but it isn't necessarily cancer or cancer treatment related either.

After my experience with my thinking my initial lump was a hypochondriac nursing mother going nutso and ignoring it only to find that it WAS breast cancer and my recent experience in pushing and discovering that my severe pelvic pain was actually a fracture....I don't leave things to conjecture anymore, but I pursue them....and I make sure that I pursue them with the right doctor.....I wouldn't see my oncologist about my eyes or my sore make sure that you don't tend to think of your oncologist as your general practicioner as well. Be proactive.

Monday, October 26, 2009

Learning to Speak Up

Sometimes people say the stupidest things to breast cancer survivors. Unfortunately, sometimes the people who make the worst utterances are doctors.

Recently, my husband's cousin was in a pretty bad accident. She is a stage four breast cancer survivor as well, although only for about 4 years. She doesn't remember much of the accident--someone ran a red light and hit her as she was making a left hand turn on a green arrow. The impact drove her into another car. She suffered a broken foot, a severely shattered wrist, and several hairline fractures on her spine.

The day after the accident, a doctor came into her room and told her about the breaks and in addition said "We also see something else, but it might be cancer." With that, he left. He wasn't an oncologist. He wasn't even a specialist in reading MRIs. No explanation...he just dropped this tidbit of information and left.

She was in pretty fragile shape to begin with and to have him say this was just unconscionable, particularly when he hadn't ascertained that this was indeed the problem.

It brought me back to the time when I had my mastectomy. I was in my room when the resident and his little herd of doctors in training came in. He bruskly looked at me and said "Well, you didn't have anything important removed, so you'll be going home tomorrow." Hmm...I wonder what he would have to say if I had removed one of his "not very important parts." I didn't quibble with the fact that I was going home and I realized that what he was saying was that I didn't have any abdominal areas opened or whatever, but this was a pretty insensitive thing to say, and I told him so. In no uncertain terms in front of his students.

If we as patients don't speak up when something idiotic or insentitive is said, then how will anyone ever learn?

Words can be pretty dangerous. We are fighting enough, we don't need the extra burden of thoughtless comments.

The image on this page is a datura plant. It had been given to me and I over wintered it...or tried to. I thought it was dead and tossed it on the compost heap...only to discover it growing like crazy. It is a plant I don't particularly care for. It is HUGE..or at least it grew huge in my compost heap. It has prickly fruit on it which produce copious seeds. The entire plant is poisonous. This plant has the same effect as thoughtless, painful words. They are thrown out, they grow and can pop back and make you sick. We need to weed them out.

Here's more on datura.

Saturday, October 17, 2009

Thinking Pink

Today I took a look at the Dayton Daily News and was just a little revolted by the fact that they used pink paper as part of their Breast Cancer Awareness push. Pink newsprint isn't very pretty....and it isn't very easy to read through.

Sometimes I think that the "thinking pink" campaigns have gone a little far. For those of us who live with breast cancer, thinking of breast cancer only during Breast Cancer Awareness month (October) or around Mother's Day (when there is another push) seems a little trite.

I also object to all the items which are sold in pink and report a "portion of the sale of this item goes for Breast Cancer Awareness". ...or something similar. Sometimes, these donation from the sale of pink items are only a very small percentage of the item's profit. The other thing which annoys me about this is that the company selling the item is able to take the tax write off as a charitable gift whereas the person making the purchase, ostensibly to help breast cancer programs gets to deduct nothing.

I suppose I'm wrong. Something is better than nothing. I suppose if 10 women are encouraged to go get mammograms or are able to be helped by the foundations supported by these companies, then the promotions are worthwhile.

On the other hand, I had been involved in the Susan Koman Race for the Cure in Connecticut for all the years it ran there while I lived there save one, and that was the first year I was diagnosed and was having surgery on the Friday before the race at Walnut Hill. Yet, in the years which have passed, we have made precious little progress.

The treatments available since the last treatment I had 12 years ago haven't changed. Tiny steps have been made forward.

How could breast cancer survivors be better served and why haven't we made more progress? I expressed this quandary with a friend of mine who was at breakfast with me. She related that someone had pointed out that what we need is a Breast specialist...just as we have specialists in various heart, brain or whatever diseases. We are treating breast cancer and breast issues piecemeal.

I agree. If someone would look at us as whole individuals and how the cancer effects all portions of our lives, perhaps we would be able to be better helped. I think of the things I have experienced, from the sexual side effects (pain, lack of interest etc) from the chemo and subsequent oophrectomy to the current issue with the fracture in my pelvis caused by the cancer and the high-dose radiation to the pelvis long after the radiation occurred. There's sort of a lackadaisical response.

I also think back to when I was nursing. I had plugged ducts. The OBGYN wasn't too interested....they were more interested in the pregnancy issues. The pediatrician didn't really know, they were interested in the health of my baby. What was really happening was the the cancer in the ductal tissue was blocking the ducts......and I simply didn't know.

Think about how it might have turned out if I was able to go to someone who actually studied the breast and knew about breast health. Think about how it might be even now if there was someone to look at all the side effects and how best to manage them now that I am a long term breast cancer survivor.

Maybe we'll get there someday. Maybe buying and thinking pink will help us get there. It just needs to be sooner....not later. Think pink, but better yet, Act Pink.

Sunday, October 11, 2009

Listen to your body, then make your Doctor listen to you

I am a firm advocate of listening to my body. That's not to say that I whine and moan about every little bump, frazzle or pain. I don't.

Nor do I go running to the doctor at every sneeze. I have, however, learned to know what is significant and what isn't, and if I am not sure, then I need to ask a doc.

I know I have mentioned the muscle pain that I have had for the last year and a half. About a month ago, the pain changed location and got worse. Much worse.

You have to understand, I have a high tolerance for pain. In fact, I delivered my daughter without anesthesia. When I had my complete oophrectomy and hysterectomy, I took over the counter acetaminophen....and not a lot of it.

This pain that I experience when I moved in particular ways literally caused my eyes to water. In water aerobics, I almost passed out it was so severe. I had just been to the oncologist, and he had said that I would have a pet scan in January.

Well, with the pain escalating so and being so severe, I was actually hobbling around, I decided to ask him if I might have it earlier. My reasoning was that if it WAS cancer, then I would rather know about it now so I could start earlier trying to get everything settled out. I also thought that if there was a reason that having it earlier would cause problems, either with insurance or as a problem in my care (too much radiation?), then he would tell me and we could figure out what to do from there.

So, two days before I left for a 12 day visit to my family in Montana (by way of Washington state), I had a P.E.T. scan. Usually, it takes about a week for the reports to get back. My oncologist called me and left a message that he was going to try to talk to me the next day and that "it wasn't as bad as we thought, but it was sort of complicated."

Complicated???!!!! I called the office and left my cell phone number. He called the next day....only to have the cell phone drop it as I answered (if the wind blows the wrong direction in my parents house you are apt to do this....there isn't a lot of coverage when there are so few people to the acre). I was disgusted as he was calling from his office phone and if you redialed the origin number, you got a recording saying the office was closed.

Fortunately, he was able to get me on the second try and I vaulted upstairs (as best I could) so I wouldn't lose the call. It turns out I have a hairline fracture on the pelvis in the area of the original cancer and radiation. There is no clear sign of cancer returning (which isn't to say it isn't there necessarily), but the "complication" is that we have no idea whether the bone will heal or if it does, how well and how quickly it will heal.

He will put me on an I.V. to strengthen the bone. I'll go in and get it once a month. I did this in the past when they couldn't see what was going on, but three years ago they removed my obtaining good veins is rather difficult.

I'm glad to know what it was....and especially happy that I pressed the issue to find out what was really going on. I know now that pushing it and doing exercises at the present time isn't really going to do any good, and may actually prolong the healing as the tendons and muscles which attach to the illiatic crest flex the bone and cause the hairline to move...and THAT's what hurt.

I gimp around...I walk slowly and using a shovel to plant the bulbs and finish putting the garden to bed for winter is out. I have to be careful as if I ignore it and walk too much, I pay for it in discomfort the next day.

So... I'm grateful that it is what it is....and it gives me all sorts of openings for being a pain in the derriere, and answering questions like "How to you put a cast on that?" Well...there is an expression about having your ummm . . . hindquarters . . . in a sling....but I'm not there yet. Or am I?