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 throat....so make sure that you don't tend to think of your oncologist as your general practicioner as well. Be proactive.

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.

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.

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 port...so 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?

I've Reached a New Level

I've finally reached a new level! YAY! I think...hmm. I guess I'll let you decide.

Two of my neighbors retired this year from teaching school. While only slightly my seniors, their kids are grown and gone and I think one of them is a little afraid of not having enough to do.

So...she signed us all up for water aerobics. She may have an ulterior motive...trying to get me to get more active and resolve the pain in my pelvis which has been getting greater...I don't know.

Today was the second day of the class which meets three times a week. I've done water aerobics before, and I'm always surprised at how fit I am compared to the other people...I suppose it is because I garden so much. It was painful when I had to do things which moved my right leg laterally. But I muddled through and I'm hoping that this is only scar tissue which needs to be stretched out so that I can go back to a more normal life.

So...what's the milestone? Well, I had my mastectomy in January, 1998. When they did it, they were not able to remove the scars from the lumpectomy because of where they were placed... Frankly, it looks rather like I've tangled with a bear.

For years, I've been very awkward about having a prosthesis and being one-breasted. I always went to dressing cubicles and sort of hid. Today, I wasn't so shy and dressed in the open bay of the locker room.

This may seem rather silly....but this IS a milestone. I suppose that part of it is that so many people have now had breast cancer....the other thing is while I am not flaunting it, it is me. I'm tired of going to great lengths to cover up my left side as I change from my swimming suit to day clothes. Hopefully, the world will be able to accept my battle scars with grace . . . or at least the women in the locker room if not the whole world.

Medical Advertising: A Slippery Slope

This morning, I was a little annoyed to see a commercial on TV advocating people to be tested for BRCA.....but it wasn't a hospital, it was a private thing. It was pointing out that you could either rest assured you didn't have the gene mutation for breast cancer if there was history in your family, or you could take steps if you did find that you had the gene abnormalities.

I find it horrible that pharmaceutical companies are directly advertising to patients, and spending a pretty penny on it. High advertising costs, of course, drive up the cost of the drug. I also hate it because doctors should be the ones who evaluate whether or not a drug is appropriate, not the patient...viz Michael Jackson.

I understand that doctors in general may not be able to keep abreast of everything, but on the other hand, very few patients can make heads or tails out of medical findings in medical journals, and sometimes the translations are less than to be desired.

I also didn't like the fact that we don't know all the genes responsible for developing breast cancer. We probably will find more, but if you come up negative for BRCA1 and BRCA2, it doesn't mean you won't get breast cancer. Conversely, there are people out there who have the gene abnormalities who will never develop breast cancer.

Yet, this advertisement made it seem like it was a big bandaid ... GET this test! BE Free from Worry! Well, it just seems to me like this is playing on people's fears.

I am also not convinced that being tested and finding the abnormalities might not impact the children of the carrier. There are no safeguards in place to prevent them from being denied coverage if there is something found....I'm not convinced this is safe yet.

It would seem to me that it would be far better to try to figure out the causes of cancer and better treatments....but hey, I'm just a lonely little survivor who dislikes it when medical companies/drug companies are trying to take advantage of a bad situation.

Planing

Tonight, as I was making dinner, I was listening/watching the NBC tribute to Teddy Kennedy. I thought back to riding my bike out to Chappaquidick and wondering how one could forget that this man was on this desolate bit of road with a campaign worker...and...well, you know the story.

However, Teddy seemed to have turned a leaf. He certainly seemed to have been able to do a lot of positive things for someone who would probably best be described as a rogue...

Anyway, what I was thinking as I chopped up yet another zucchini was that the networks had had time to put together things on his life and get interviews with people to show what a complex person he was.

I also thought back to a friend who died of Cancer about 5 years ago. She had only been diagnosed for a short amount of time. She wasn't terribly ill when she was diagnosed, and she was also in her 80s. She put together her own funeral. She spoke with the minister about what she wanted to be said, what rite she wanted (she was Episcopalian), and most importantly to her, what music would be used.

Music was incredibly important to Dottie. She sang alto in the choir with me and still had a good voice despite her age. Her children and grandchildren were also musical. Her service was long, but it was beautiful, and I'm sure she, and everyone who was there, enjoyed it.

Regardless of whether we have cancer or not, we should write down what we want to have done/said at our funerals. That's one gift we can make for the bereaved we leave behind.....the fewer decisions they have to make, the better. Copies of instructions should be left with several people so that they can easily be located.

I know that my daughter knows I want to be dealt with as cheaply as possible and to have a party for all my friends in celebration of my life afterward.

I hope that they know who to contact (my quilting friends) to disperse my collection of fabric, etc. I shudder when I think of that task....

While I suppose some would consider setting out what I want to have done in the way of funerals, burial place, etc. is maudlin, I think it would actually be the best gift in the circumstances that I could give to my loved ones....the ability to know that it was being done the way I would have wanted it with no argument, and for the least amount of decision making necessary for the people I have left behind.

Something to think about. Besides, I can then lie all I want in my obituary. :)