Finding Yourself

Time after time, I hear breast cancer survivors say that they have lost themselves somewhere in this cancer journey. Indeed, I have felt this several times along this long path.

I don't often hear oncologists, or people writing articles about breast cancer patients mention it. And yet, for many of us, it is a struggle. It seems like most of the care and thought about the disease is with the diagnosis and the treatment.

After treatment has been completed, I don't hear many people talk about what the survivor has been going through mentally. In fact, I think that many (if not most) oncologists aren't quite sure how to deal with us. Sometimes going to a therapist is suggested, but often insurance doesn't cover it or there just isn't the funds to pay for all the co-pays....and it is a rare therapist who can really understand this.

To be sure, it isn't uncommon for anyone who has gone through a life change to feel this way. Indeed, when I had my daughter and left my position at the museum I struggled. No longer did I have a professional standing, I was just a mom. I have heard others struggle with the same thing.

But, for the cancer survivor, there is even a harder struggle. We have come out of a life threatening situation. Many of us have had long, hard struggles with chemo-therapy. We are no longer actively fighting. Our bodies may have been changed. Our futures are no longer as certain as they had been (or rather as we had perceived them). What do we want? How do we go about achieving it? What physical limitations do we now have which we didn't have previously?

I understand, and this may be an imperfect understanding, that among some Jewish cultures, when an individual has a life threatening, or near death experience, they then change their name. Perhaps this is a good idea. It gives us a new beginning, one not necessarily burdened with the past. It allows us to remake ourselves.

I don't know what the answer is for this. It is something I struggle with. I do wish, however, that more care would be taken to look at the long-term psychological effects and that tools would be given us to help us cope with this phenomena.

New Mammogram Recommendations

I have been struggling with how I am going to approach this. When I heard the new government recommendations for mammograms, I was infuriated. However, as someone who has had some training in science, and more in maintaining objectivity in what I read, I needed to know more.

Part of the problem is that this recommendation is sheer statistics and looking at things from a financial aspect. We are not statistics. We are individuals. Part of me says that if one person is saved the horror that I have gone through, then it is worth it. Finding cancer when it is small rather than the 3 cm tumor I had when I started this dance in 1994 would probably have led to a better outcome for me and less invasive or drastic treatments. However, I was too young to have a mammogram (at age 34). I do know, however, several women who have been diagnosed in their 40s solely by finding it on a mammogram. So, what price is life? Who is going to determine which of us will find it at a later date or when it requires far more expensive treatments?

The comment that keeps on coming up is that 10% of mammograms produce false positives. Is it 10% of mammograms, or is it 10% of the mammograms which find things produce a false positive (which of course would be a much smaller number). While I suppose that if you had a false positive, it would be a pain to know that you went through the biopsies only to find it wasn't cancer after all (and I only know two people that this happened to, both women in whose families had lots of deaths and diagnosis of breast cancer), but I would think it would be a relief.

I wanted to find out what other countries did. How do they approach screening for breast cancer? I wasn't able to find it easily....heck, when I googled it under a variety of methods I couldn't find it at all.

I was also appalled at the recent recommendation that women not do self-breast exams. If I had done them and BELIEVED in what I found, then I probably wouldn't have spent 12 years of my life dealing with stage IV breast cancer. I probably would have found the cancer when it was smaller (as I did find a thickening and asked my husband if he thought it was anything --dumb dumb move, but I thought I was a hypochondriac...why did I have to worry about breast cancer? It wasn't in my family). Women who do self breast exams regularly know where their lumps are. If they feel a problem then they can check it out.

The response to that recently has been "well, usually women find it by accident (well, yah, if we don't do breast self exams, and I think the majority of women aren't too religious in doing them), and it would have to be fairly big if the tumor is deep." I'll grant you that...but I can honestly say that the tumor was MUCH larger when I waited for six months. Besides, what harm does it do? Again, if one woman finds something suspicious and checks it out and finds that it is cancer, then it works. If another woman looks for 100 times and finds nothing, then lucky her.

I think that most of us are afraid that by issuing this recommendation that soon insurance companies are going to use it as a mandate to not cover mammograms in our 40s. While today I saw that "insurance companies assure people that they are not going to change their coverage" I feel that this is bolderdash and it will only be a matter of time after the furor dies down that this is changed. After all, my own insurance company stopped covering wigs for women undergoing chemo as it is "cosmetic and not necessary" (fine for some women, not so fine for others....).

In addition, for doctors (and the Surgeon General) to just say "keep on doing what you're doing," and to "make the decision on your own" or "decide what is right for you" maddening. I know that it is better than it was for us in that we can participate in chosing our treatment, however sometimes getting advice or even the information we need to make the decision is like pulling teeth. Sometimes I feel like we are having to be our own doctors....and after all, how can we who do not have medical degrees and have the background make such decisions? I don't want a doctor to be imperialistic, but I do want a doctor who gives sound information, ON BOTH SIDES of the issue and points us to the studies and explains them so we can make a decision.

The other aspect of this whole thing, the recommendations for mammograms and the advice to stop doing self-breast exams, is that it trivializes breast cancer. I know, heart disease is still the number one killer of both men and women in the United States and we should pay particular attention to that, but I think that both heart and breast health is important.

I am particularly incensed at this "Breast cancer campaigns have helped raise awareness about breast cancer, as well as money for research. But all those pink ribbons have given women an inflated fear of the disease – and unrealistic expectations about the benefits of mammograms, says Lisa Schwartz, a doctor at the Veterans Affairs Outcomes Group in White River Junction, Vt." (the whole article may be found here). I wished to the ends of the earth that I had known that I was at risk for breast cancer just because I am a woman back in 1994 when I was first diagnosed. I can assure you, Lisa Schwartz, that we have REASON to fear breast cancer. I have spent most of my adult life fighting to stay alive just because of it. SHAME ON YOU! I want to know why more than 5 women from my graduating class have been diagnosed with breast cancer before the age of 50 (the graduating class of men and women from my high school was 96), three of us before we were 40 and one of us is now dead. If these aren't statistics to make you fear the disease, I don't know what is.

In addition, I'd really like to have my breast back. I would really like to have healthy bones which are not weakened by a six month course of treatment of CAF and a 9 month course of treatment of Taxol and having my ovaries removed. I'd really like to have a daughter who would remember what we did fun together, not remembering what I couldn't do because I was either in treatment or recovering or dealing with the side effects of the treatment to my pelvis.

I believe that early detection saves lives. I just can't believe that the "powers that be" are now suggesting that we not use the tools for early detection.

Survivor Guilt

Sometimes I suffer from what I think might be termed (to some degree) as survivor guilt. Here's what is going on. I'm sort of addicted to Bejeweled on Facebook. My daughter has even snarled at me to get off it and "there are things to help you with that mom".

I find it sort of exhilarating. I want to see how fast I can do it and how I can drive up the numbers. Without a doubt, I've spent hours on this stupid game....and I have other things I could and should be doing.

Here's where the guilt kicks in: this is a useless game and I should be putting my time to better use. I have been given more hours when many of the people I was in treatment with have died. Why should I squander the hours I have and something as mindless and silly as an on-line game? How do I know that I won't be injured, killed, or diagnosed with a recurrence tomorrow and would want back all the time I have spent making three and four gem matches?

Part of me feels very guilty. Another part of me wonders if it really matters... The better part of me wants to conquer this weakness and instill more discipline. I wonder which of the parts will win.

It's All in How you Look At it

What do you see here? Is it something dead, or is it something which is looking to the future and will give life? Is it a weed, or is it a plant which provides food for monarch butterflies and nesting material and food for birds such as the goldfinch? It's all in how you look at it.

Looking at things in perhaps a different way made my getting through cancer treatment a little bit easier. I focused on things which might help. Of course, this is not to say I didn't waver, I didn't have times which were full of tears. I did. When I was diagnosed with stage four cancer with bone mets in my pelvis after thinking I only had microcalcifications in my breast, I cried buckets....

However, I still think that my general outlook made things easier to bear. One of the things I did was I looked at cancer and the treatment as a new adventure. In stead of crying about losing my hair, I wondered what I would look like without hair. I thought "Hey, I'd never be bald voluntarily, this will be a new experience!" I also have to say it was wonderful to get out of the shower and not have to dry my hair...and I never had a hair out of place! In addition, I didn't have to shave my legs for a while! Sheer bliss!

When I was having chemo and was vomiting a lot, I kept on saying to myself, "the sicker I am, the more cancer it is killing." I also kept on counting down. One done, I'm on my way. Two down, only four more to go. Somehow, this mental belt notching really made life easier....or at least I fooled myself into thinking so. And if it was merely me fooling myself, who cares?

I used visualizations...in my case I thought of catfish prowling through my blood stream eating up cancer cells. Going to my pelvis and cleaning the area where the cancer was. The imagery was my cute little Aeneas catfish from my fish tank who are always busily looking for scraps and bits to eat.

I don't mean to sound like a Pollyanna, but I have to say it helped me a lot. I also think it helped those around me to had to watch me struggle through all of this. So...while it may not be an adventure that you WANTED to go on, maybe looking at it in this way will help you get through it as well.

If you didn't recognize the plant, it is the common milkweed (Asclepias syriaca). I don't usually pull it all out of my garden because I do want to provide host materials for monarchs....and the sweetly scented, dusty mauve blooms don't hurt either. It is also interesting to note that Linaeus named it Asclepias after Asclepius, the Greek god of healing because folk traditions ascribe so many healing properties to it....including wart removal!

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.