Sunday, December 13, 2009

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.

Sunday, November 22, 2009

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.

Saturday, November 14, 2009

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.

Thursday, November 5, 2009

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!

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 throat....so 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 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?

Friday, September 11, 2009

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.

Monday, August 31, 2009

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.

Wednesday, August 26, 2009

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. :)

Monday, August 24, 2009

Sometimes I just want to scream!

Sometimes I feel like I want to scream! All knotted up...why? Information comes out and says we should do this and avoid that....then a week later, they say avoid what we had been told to do before and now do what we've been told to avoid.

Eat this! Do that! Well, heck. Life is just too short to do all the things that "They" tell us we "should", "must", etc. and usually, it is too expensive anyway (anyone check out a quart of Mangosteen juice lately? Ever notice it is mostly cherry juice anyway?????).

While there may be truth in bits and parts, I have decided that for me, I will try to do things in moderation (stopping eating sugary things is one thing I think I must do MORE of ) and choose the path which makes the most sense as well as is based on sound science.

Monday, August 3, 2009

To cut, or not to cut.....Prophylactic Mastectomies

Back when I had my mastectomy, I opted not to have the other breast removed as well. I felt that it was healthy, and I just couldn't face any more surgery (read mutilation) than I had to have.

In addition, I figured it didn't make much difference because even if you had a
prophylactic mastectomy, it wasn't a guarantee that it wasn't going to come back.

When I moved to Ohio, my new oncologist asked me about it as he thought it would be a good idea. I responded that it wasn't fool-proof, so what was the point.

Now, I wonder if I should. Of course, I am not BRCA1 or BRCA2 positive, I have yearly mammograms and P.E.T. scans. I think that somehow I felt that leaving the remaining breast was like a "cancer catcher", that is, instead of attacking my brain, lung, bone or liver, it would go after the breast (this is not true, for instance, my recurrence included mets to the bone, but the right breast wasn't affected...just the left, but it was my magical thinking after having been diagnosed the second time).

I guess that reducing a second primary to the opposite breast by as much as 93% would be a good idea, even if the remaining breast tissue on the chest wall or in the nodes was still at risk of developing cancer.

I don't relish another surgery. I suppose, I should think more about this after having my yearly scan and hopefully ruling out any involvement with the pelvis which is still giving me problems.
I'd love to hear anyone's thoughts on this as I'm completely on the fence. Some of my friends have had bi-lateral prophylactic mastectomies...I think at present, I'm just chicken and that's OK.

Friday, July 31, 2009

A Cautionary Tale about Axillary Dissection effects


A couple of weeks ago, I happened to look at the upper tricep area on my arm...right at the point where it hits your back or your side....the side of your back? as I was getting ready for bed.
I was alarmed to see that there was a HUGE welt...about 1 1/2 - 2" long about 1/2" wide and raised about 1/4". I suspect it was a spider bite, but it was red and angry.
I never felt it. I wouldn't have noticed it except I happened to see it out of the corner of my eye on the mirror as I walked by it.
I never really noticed until then how much nerve damage I had there from the axillary dissection. Basically, the whole tricep area is numb.
I will have to pay particular attention to make sure that it doesn't get infected. P. J. Hamel on the Healthnetwork also pointed out that one could get lymphedema quite easily from this.

Lymphedema can happen at any time post-op....6 months, 6 years...or for me 60 years. ...ok..more like 16 years, I doubt I'll make it to 109. It is something to be aware of. I'm fairly lax about it...but certainly using antibiotic ointment on small cuts and insect bites on the affected arm, as well as using hydrogen peroxide is not out of line. My sister got lymphedema when her dog pulled sharply on her leash. I hear that you are supposed to make sure that you carry heavy loads on your opposite arm...and I admit that I'm very bad about that as my left arm is my strongest.
Anyway, just a little heads up and a reminder....be aware, fore warned is fore armed...not forearmed. ; )

Saturday, July 25, 2009

I face my own Mont Ventoux.


If you follow the Tour de France, which all of us do in this household, you'll know that Mont Ventoux is a sheer climb, known as "the wall" for the men of the Peloton. This year, Mont Ventoux comes at the end of the race, just one day before the race culminates at the Arc de Triumphe on the Champs Elysees in Paris. The arch of triumph on the Elysian fields.

In Greek mythology, the Elysian fields are the final resting place of heroes and those of great virtue. The Arc de Triumphe is a triumphal arch...an arch which was built to commemorate battles by the victorious, in this case, Napoleon commissioned this monument to his successes.


Why such a title, then? Largely, due to frustration, hence, my Mont Ventoux. I make no secret of the fact that I am a Stage IV breast cancer survivor. Lately, the pain in my hip has gotten much worse. My right hip, the area where I had the bone metastases in 1997 is weaker, in addition to being very painful. While this is quite literally a pain in the butt, it is also a little scary.


No. Correction. Make it a lot scary. While I could live with the fact that it hurts, my tumor markers have risen for two checks in a row. I'm out of the "OK" range and into the problematic range.

My Oncologist shrugs and says that for some unknown reason my markers rise and fall. However, I'm a little concerned because they usually don't stay elevated for two times in a row (three months apart). He calls tumor markers "cooties," in that if they are really significantly elevated they tell us something, but in situations like mine, they may mean something, they may mean nothing.


Then, he cheerfully told me "Besides, even if it is cancer in your pelvis again, I wouldn't do anything different. As it gets worse, we'd use radiation for pain control."


Ducky, just ducky. Now the other frustration is this. You can't miss the fact that I am having trouble. I favor that leg. My neighbor was suggesting that I not eat dairy or wheat products and started suggesting things for arthritis. I explained that it wasn't arthritis. I've told her before that I've had stage IV breast cancer and had bone mets.

Yesterday, she suggested that I go to a non-traditional doctor in town, that he wasn't a chiropractor, but he might be able to help. I looked at her and said, "If it is what I think it might be, then I don't think he can help much." She asked what I meant, and I explained that because my tumor markers are up, then it might mean it's back. "But you only had breast cancer." Yep. She said, I ONLY had breast cancer. I replied, yes, with bone metastases. She had no idea that it can spread to the bone.

Sometimes I forget that the general public doesn't know what stage IV cancer means. In fact, many people don't have the foggiest idea of what the whole routine is.

I recently read a novel written collaboratively by three women who run a quilt shop. One of the characters in the book is diagnosed with breast cancer. While she doesn't have to have chemotherapy, only radiation treatments as the cancer was caught early, these authors had her lose her hair and vomit. I just about threw the book across the room.

How can people be so uninformed? With all the women who get breast cancer, why couldn't they ask what the side effects are or do a little research on line? There's that much mystery? Radiation can make you tired. It can make you have "sunburn". It doesn't, unless you're having it on your head, make you lose your hair, and it doesn't make you vomit.


So...here I am snarling about people who, although there are tons of people getting diagnosed every day, can't seem to get it into their heads about what it means to those of us who have it.

And me? Well, I see my oncologist in Sept. At that point, I'll ask him about getting an early scan (my last PET was in November, 2008). If it is cancer again, I'll ask my doc in Connecticut for a second opinion as I REALLY don't like this 'there's nothing to do except pain relief.'

Is it my final wall? Will I be going soon to the Elysian fields myself? I don't know, but it isn't going to be tomorrow. And it won't be this year. I will someday have a final resting place, as Life has a 100% mortality rate at present....but for now, I'm here. : ) ....and maybe I'll just wear the Yellow Jersey....and the polka-dotted jersey for the Queen of the Mountain.

Oh yes..the photo is sunrise on the Rocky Mountains towards Glacier park from my mom's kitchen window in Montana.

Friday, July 17, 2009

To tell your child or not tell your child?

To tell your children you have cancer, or not to tell your children you have cancer? I wish I had an angel like Mary had in this stained glass image of the Annunciation which is presently on display at the Navy Pier in Chicago.

Recently, on the HealthNetwork website, someone shared her experience as a grown child whose mother shielded her from her having cancer when she was 9. PJ Hammel lauded her mother for sparing the woman the knowledge of her cancer thereby preserving the daughter's childhood.

Hmmm.

This is a really personal decision, and I suppose a tough one. As I have said before, I had my first bout when my daughter was 15 months, so that was no biggie, she lived it, I didn't "tell" her.

The second time, she was 4 1/2 years old. I didn't shield it from her, I merely told her I had cancer and was very sick and that things would be a little different and difficult while I was getting medicine for the illness.

I didn't shield her from it because you can't hide the fact that you're bald (in fact, I had no hair anywhere...I lost most of my eyelashes and eyebrows). I didn't know if Taxol was going to make me ill (it didn't make me throw up) but I knew that I was really sick on CAF.

In addition, previously I had been pregnant with twins. I had decided not to tell her until it was closer to my due date and I was showing as I thought that the concept of 9 months was a bit much. A friend, who had a child her age, asked and I told her I was pregnant and was carrying twins and was not going to tell my daughter until I was further along in my pregnancy.

Within 24 hours, she told her 4 1/2 year old that I was going to have a baby, which meant I had to tell my daughter. This made it really difficult when I miscarried at 3 1/2 months.

Knowing that I had expressly said I wasn't going to tell her and to have it bandied about with a pregnancy, I knew that you couldn't keep a cancer diagnosis quiet. People would talk in front of her, and most people had me with both feet in the grave at this point since it was stage IV.

I felt that not telling her about it would make it more scary and I certainly didn't want someone other than me telling her. I also felt that having a culture of denial wasn't the healthiest to start a child out in life with.

So....she knew. I also thought it was important that she know because she would have to be careful. I know women who had it swept under the rug and when their daughters developed breast cancer and were dumbfounded, it came out that the mothers had had it too....and perhaps they would have proceded differently had they known.

Was it the right choice? I don't know. Time will tell. She is a normal, self-absorbed teenager. She is proud that I went through Hell and came out the other side. Has it affected her in other ways? I don't know. I am fearful for that but as a mother, you're fearful for a lot of things you do in your parenting techniques.

Does she remember it? Probably not. She can't remember that we used to have dinner in the dining room every night in the house we had in Connecticut from her early childhood until she was 11....so, would it have made any difference? I don't know. She remembers going places and staying with people as I got treatments. More than that, not much.

When she's older, I'll ask her about the choice I made. Right now, I'll just count is as another difficult item in the list of things one deals with when one deals with a cancer diagnosis.

Thursday, July 16, 2009

Carpe Diem: Sieze the Day

Yesterday, I got an email from someone I have never met before. She was following a Yahoo group on Breast Cancer Stage IV which I left in disgust because it had basically been hijacked.

She had been 15 years cancer free, but recently breast cancer returned as stage IV.

This drilled home the message for everyone: Seize the day. No matter how long you have been cancer free, breast cancer may return at any time. I have known people who had been free of cancer for 30 years and had it return (and they didn't die from it, so again, you can beat the odds).

It brought to mind my neighbor in Meriden. She was diagnosed with liver cancer, and was pretty far along when she found out. I was visiting her and she was in tears, which was more often than not even though it had been several months since her diagnosis. She was worrying about dying and about whether or not it would be painful.

I asked her how she felt today. She was startled, and said "Fine." Well then, enjoy the day. Do what you can. Do what you want. Go to the beach, eat a popsicle. Jump a rope. Do something you haven't done in years. Most of all, have fun.

None of us know the hour of our death. All of us hope it will be pain free. So, go forth, and seize the day which has been given to you. Know that bad days will pass, but for the days you feel well and have control over, enjoy! Have Fun! Fill it with love!

And...forgive my pun with my "carps."

Friday, July 10, 2009

Something Must Be Done

This is my friend Susan Schaller's quilt called "Butterflies in My Garden." Susan was diagnosed about two years ago with stage 1 breast cancer. She has many medical issues, from diabetes, to a bad back and a hip which has been replaced 3 times.

Today, there was a quilt challenge announced on the Quiltart message board. It was calling for small sized quilts (9" x 12") which would be auctioned off in a reverse auction (starting at $100 then the next day dropping to $75, and so forth). The funds were to raise money for a woman who was fighting breast cancer but had no more resources.

This is just plain wrong. I know how people who have medical conditions can lose their homes and go bankrupt trying to pay for the treatment. That's wrong too. I also find it maddening if you are wealthy, there's a whole range of things to try which are not available to the average person.

I also understand Susan's plaintive cry "I just want to be able to see the doctor I want." However, something must be done about the American health system because we shouldn't have to rely upon selling small art quilts to pay our bills.

I don't know what the answer is, but something has to change and we all have to write our congressmen to let them know that we need to have the same access to health care that they do and the same insurance, or something commensurate. What's sauce for the goose, is sauce for the gander.

Sunday, July 5, 2009

Does it Really Matter?

Last week, a friend of mine told me that she had lung cancer and was waiting to find out what type.


Since then, other mutual friends have talked to me. Their first question was "Did she smoke?" or..."I heard she was a smoker."

Does it really matter? I think that this is one of those reactions that people have which on a subconscious level is trying to assign a "reason" for cancer, and that by doing so if they haven't participated in that particular activity, then that removes them a step from having cancer themselves.

Having said that, I will also say that several of the people who have asked that were cancer survivors themselves.

My point is that it doesn't really matter if they smoked or not...or did anything else which might have contributed to their getting cancer. They still have to go through the whole range of emotions and difficulty that a cancer diagnosis brings. They still face treatment and recovery.

We need to get over that having disease is some divine retribution or result of what we do. Cancer happens. We are side swiped by this evil disease and it is devastating. It marks us and our families forever.

Instead, we must offer love and support. It doesn't really matter in the long run.

Friday, June 26, 2009

Taking Advantage of the Cancer Patient



I am really disgusted with one of the message boards (Yahoo groups) I have been following. This particular group was developed for Stage IV breast cancer survivors.

One person... who lists variously as "nur said" or has no name at all but posts the blog of "idohealth" has a nasty habit of posting all sorts of things about how awful and terrible conventional medicine and treatment is.

Often what this self-appointed guru posts is complete fiction.

The person never identifies him or herself. Never says what his/her experience with cancer is, or anything personal.

The thing which is really maddening is that this person has taken over the group. There apparently isn't a moderator. The tripe does nothing but spew negativity and fear.

Granted, the poster may be thinking that he/she/it is doing survivors a favor by pointing out problems in the medical field or suggesting alternatives. But to my mind, he/she/it is doing nothing but unnecessarily scaring people.

Word to the wise: don't believe EVERYTHING you hear, especially on the Internet and especially from people who don't identify themselves (and yes, that includes me). The second word of wisdom is look for sites for survivors which have moderators who don't allow people overtake the site.

Wednesday, June 24, 2009

A New Possibility...the Silver bullet???


Ok...so the picture is of Las Vegas, not fireworks, but it is the best I could do from my own shots.
According to the news tonight, they have determined that PARP drugs might have new application for those of us who are not BRCA1 or BRCA2 positive....I'm not. Apparently, the drug has been used for those who have these two gene abnormalities with good results, but it may also be useful for those who don't have the gene abnormalities.....
Supposedly, the trials will be finished and it will be approved in as soon as 3 years.
Maybe this is the patch I need. I don't know. We don't even know what is going on with me (although my tumor markers are up, there is no discernable sign of disease).
I remember about a year after finishing my treatment the second time around, and being on a ACS call in show with a question for a recognized oncologist. I asked if there was anything for those of us who went through treatment for stage IV but didn't know if it were successful or not. She laughed at me and said "So, you're looking for the silver bullet."
Well, duh. Of course I'm looking for a silver bullet. I also talked to a drug company and asked if there were any trials for people who were stage IV but had completed treatment. They said no, and that probably there would never be as they don't like to look at people who had gone through two treatments...because "success" may have been achieved with one of the earlier treatments.
I know that I can't get my hopes up, but for 11 years there has been very little progress in anything which might be able to help me....so, I'm crossing my fingers that this might be the one.

Sunday, June 21, 2009

Scary week


Last week I had a really scary time. My teenage daughter came to me with a hard, swollen, very angry breast. There was no sign of an insect bite and I had never had such a thing at her age.
She said that it had been that way for several days. I tried to appear calm, while inside my head was spinning with thoughts of inflammatory breast disease. We decided to wait for a few days to make sure it was a full week.
Meanwhile, I got on line and started looking. Inflammatory breast disease can attack teenagers. Since I was so young when I had cancer (diagnosis at age 34, lump found in self exam six months earlier...), I felt that it could be a possibility, although I kept on telling myself it was a remote one.
I also started thinking about having some more testing done on me. I've never had any gene testing done, partly because my insurance wouldn't pay for it, partly because at present it wouldn't change any treatment for me, and finally, there is (or was) no protection that the information, if it were positive for gene abnormalities which could be hereditary that insurance companies couldn't use this against my daughter when she needed to be insured on her own.
As far as the need to know for her sake, well, we already know that she has to be careful. Not only have I had breast cancer, but so has my older sister. I'm hoping that the diet of food she has eaten will help, and certainly she is informed where I wasn't.
In the meantime, I'm hoping that they will make some breakthroughs in diagnosis and treatment. Thankfully, for the present, the problem went away this week...but it is just brought to mind at the most awful moments.

Thursday, June 11, 2009

I am more than Bits and Pieces

Sometimes I get a bit irritated with doctors and having cancer. Sometimes I feel like I am being seen as a bunch of bits and pieces...I am a whole person and it is difficult to remind people of that. Sometimes it seems like the doctors are so concerned with the cancer that they forget who I am and that there are other elements to me.

I suppose that it is only natural. After all, the most pressing issue I have is apparently the cancer one. It annoys me however, that many of the treatments I have had, or that I have done can impact the other areas which are just as pressing.

For instance, my dad had his first heart attack at age 50. He is still alive, but he has had two more. Now, at age 88 he has congestive heart failure. My great-grandmother on my father's side died of a massive heart attack at age 56. My grandfather died of a heart attack at age 68. My mother has IHSS, and her father had heart issues, and it is probable that the angina her mother had was really IHSS as well.

Part of my treatment was to have my ovaries removed at age 38. Of course, since I have had breast cancer, I can't have any kinds of hormone replacement therapies. Yet, estrogen protects the heart. In addition, there is evidence that chemo can negatively impact the heart, not just as a result of CAF. So...where does that leave me?

Looking at patients as a whole person, and indeed, looking at us holistically would be great...but going to a holistic practioner in addition to the regular chorus of doctors I go to now is not in the financial picture. Taking yoga lessons isn't in the financial picture either and neither is Wii fit ....So, I'll have to get some Yoga DVDs and work on this as I can.

Thursday, June 4, 2009

Radiation damage appears years later....


I've mentioned in earlier posts that I have been having terrific pain in my pelvis....at the same point where I had radiation in 1998 for the bone metastases. Needless to say, I've been a tad worried.

I had a PET scan in late November, 2008, which didn't show anything new. Over the winter, I haven't been as active as I usually am....instead, I've been sitting in a chair uploading books on Amazon....couch potato city.

The pain didn't seem to be any worse at one point of the day than at others....I was struggling to try to figure out if it were in the bone or in the muscle. When I ran my fingers deep along the area, I could feel the striations from the damage caused by the radiation 10 years ago.

I spoke with my oncologist about it and he didn't seem to think it was a problem. At that point, it wasn't a constant. Then it got worse. I went to my regular doctor (my primary care physician), and he recommended therapy and doing stretching exercises. There was no way I was going to do therapy again as I had done physical therapy for it soon after I had the radiation, and frankly, I couldn't afford the time or the money as we have had several large ticket unexpected expenses.

I went back to my oncologist a couple of weeks ago and told him that I was having this pain almost constantly. I did notice that it got better with heavy lifting and hard work which I have begun to do again with my working in the garden.

He explained that this was probably the radiation as it sounded very much like muscle issue and that because the PET scan came back with no change, he wasn't worried. I was completely flummoxed and asked him how that could be. The radiation was 10 years ago. Why would it show up now?

He answered that radiation damage is a very odd thing. He's had Colon cancer patients have flare ups years after having had the radiation treatment. It would then go away and periodically show up again.

That made me feel a lot better. Sometimes you wonder why the whole thing isn't explained when you first raise the question. The best idea is to question until you get an answer you can live with I guess.

Wednesday, May 27, 2009

Miracles, and when Faith, the medical field and Government clash


The picture at left is a stained glass window on exhibit at the Navy Pier in Chicago. I think it represents the bits and pieces which I have been thinking about for the last week or so.

My heart stopped when I heard about the woman who fled with her son rather than be forced to complete a cancer treatment regimen. This is a really tough call. I was sad for her and her son, that this was what they were brought to.

I can understand her fear and concern over her son's first chemo treatment. I've had horrible treatments (trust me, CAF wasn't fun), and I've also had ones which were not difficult to bear (once we figured out what the side effects for me were-- CMF and Taxol were easy). I can't imagine what it is like for a parent to have to watch the discomfort and vomiting which come with the first week of treatment.

I also understand religious convictions about not getting conventional medical treatment. I remember when I was diagnosed the second time, I was talking to one of my daughter's pre-school friend's mother. She is a Christian Scientist, and spoke with me about it. She also kindly gave me a copy of Mary Baker Eddy's book. I believe that God (or the higher spirit if you prefer) can heal. I believe that I am alive because of the intervention of many people who prayed for me.

However, I also believe in medicine. There was a joke which I heard slightly before being diagnosed with cancer, which sort of sums it up for me: There was a guy who was diagnosed with having cancer. He prayed and asked God to heal him. Suddenly, he heard God's voice telling him he would be healed. He went to his surgeon and told him he didn't need to have the tumor removed because God said he was going to be healed. He went to his oncologist and refused treatment because God said he was going to be healed. He told his radiation oncologist the same thing. A while later he died from his cancer. When he reached heaven, he asked God, "Why did I die? You said I would be healed!" God answered, "I sent you my best surgeon, my best oncologist and my best radiation oncologist, and you refused each one!"

I do think that God can work through conventional medicine. I also know that the ultimate healing is death.... I am impressed with the teachings of Mary Baker Eddy even though I have been told by theologians that her theology has some problems. I'm no theologian, but I do admire her incredible intelligence and her ability to move beyond the restrictions of the world in which she was born.

But lets get back to the mom and her son. Is it right to force someone who doesn't believe they should get medical treatment because of their religious convictions? I don't think so. But on the other hand, what was the boy's understanding of this, and how did he feel? Certainly, a 13 year old shouldn't be allowed to make all of his own decisions, but he is old enough to know what his chances are with conventional treatment and without conventional treatment. He's also old enough to understand his own religious convictions.

I am grateful that they came back and that the charges were dropped against them. I'm hoping that he has a full and complete recovery as it sounds like his chances are quite good, although the road to health is not a fun one.

But, it gets back to the intervention of the Government into an individuals choice about their health. Certainly there are other cases where someones misguided religious beliefs negatively impact the children. I suppose that's the point where government intervenes, it is the assumption that children can be negatively impacted by the decisions that their parents make for them. I suppose you could, although it is hardly comparable, say that it is similar to parents believing that it is OK to do drugs and physically abuse children and the government having to step in to prevent it. That's an extreme example, but where does the right of the individual end and the Government's need to interfere stop?

Some people believe that inoculating children against whooping cough and other childhood diseases is wrong based on religious beliefs. There are others who associate inoculations with diseases or conditions such as autism. One of the problems is that individual rights should stop when they start impacting the rights and choices of others.

For example, I chose not to smoke. I resent it when someone imposes their smoking on me by smoking in a closed environment. I have to breath that air....and I had chosen not to smoke. Why then, am I being forced to breath it because of someone else? When you apply this to inoculations, it is a bit scarier, because the individual is not inoculated, then he or she can negatively impact others by exposing them to the disease.....but it is a quandary because I don't think that the government should involve themselves in the religious beliefs of individuals.

Do I believe in the power of prayer? Absolutely. Do I think it has a positive effect on the person who is being prayed for? Absolutely, in fact I also believe it has a positive effect on the person who is doing the praying. I don't care if you call it "God" or a "higher power" or what, spirituality does have a part to play in this puzzle....too bad we can't figure it all out and determine what is right for us to do, both individually and collectively.

Saturday, May 16, 2009

Is what you heard really what was said? or the importance of having a buddy

I think one of the most important things for a newly diagnosed cancer patient to do is to take a "buddy" with them to the appointments with the doctors, especially in the early part of the process. I think we all tend to have our brains shut down and our ears close when we hear that line, "I'm sorry, but the biopsy shows that the tumor (microcalcifications, whatever) is malignant.

I have encouraged people that if they can't have someone there, then take a tape recorder. I know that on several occasions my brain just couldn't really grasp what was being said. In other cases, my understanding of what was said was entirely different than someone elses. It helps just to have someone else's perspective.

The prime example of this was when I had finished my last chemo treatment in 1998. My oncologist was Samuel Bobrow of the Hospital of St. Raphael in New Haven, CT. Sam is an excellent oncologist and a great guy. We were in one of the rooms and he had gone over my latest test results and we were looking at a film showing the metastesis to my pelvis.

He turned to me and said, "Well, we've done all we can do right now." I was shocked. I can't remember what he said next but I know I took a deep gulp and said "I know that doctors currently don't like to do this because it varies from person to person, but how long do you think I have?" He startled. "What do you mean?" I said, "How long do I have to live?"

"OH! That's not what I meant! What I meant was you have completed your treatment. We've done all that we can do at present and everything looks good, but given your history and given the fact that it is in your bone, we can't do anything further. We will keep watching you, and checking to make sure that nothing shows up. This will be a chronic disease that you will have for the rest of your life, but your death is not at this p0int iminent. "

Wow. I had heard what he had said, but I didn't understand it. While he meant that I would be managed and kept patched together until either the disease showed it's ugly head again, or they developed more methods to combat it. That certainly isn't what I had "heard" and having someone there might have helped out....but that brings up another point, if you don't understand, or even if you think you do, repeat what your understanding is back to your doctor so that you can be very clear on what is going on.

Friday, May 15, 2009

What do you tell your mother?

Not too long ago, I had a rather interesting conversation with my mom who presently lives a great distance away. I had mentioned to her that I was having great pain in my hip and was trying to figure out what it was.

A couple of weeks ago, she called and asked me if I had had a bone scan yet. I took a deep breath. I hadn't seen my oncologist since January and I wasn't due to see him until May 14.

I wasn't scheduled for a bone scan, and I had my last pet scan in November 2008. I had gone to my general practitioner to see if we couldn't rule out some things and try to figure out what to do. I had been doing lots of poking and proding trying to figure out if it was more cancer in the bone, or if it were residual damage from the radiation I received in 1998.

Since it wasn't in a joint, I was pretty sure it wasn't arthritis. But it was very strange to me to think that it was damage from the radiation. Why did it take so long to show up, and why did it hurt when I wasn't active, and not when I was digging in the garden or whatever.

My deep breath with my mom was having to tell her what the oncologist had told me in January. If it were cancer, there wasn't anything to do except continue what I was doing (taking Fosomax and Arimidex). If the pain got too bad, then they would use radiation to try to stop it.

These words were NOT what mom wanted to hear. So...what do you do? Do you tell them the whole truth or just gloss over it? My theory has always been that it is better to tell them the truth and figure out a way to deal with it.

When I talked with the onocologist again on Thursday, he explained that radiation was very strange. Sometimes people who had had colon cancer will have radiation damage flair up, then go away, years after having had the original treatment. In addition, radiation causes fiberous scar tissue which if it isn't moved, contracts and causes pain Since I had been much less active this winter than I usually am, this was probably the cause of my pain.

So...the solution is to do stretching exersizes, particularly useful would be Yoga....I guess that's a good excuse to get a Wii. :)

Friday, May 8, 2009

Remaining Positive in a Negative World

Sometimes it is really hard to stay positive in a negative world. I know that after having cancer, sometimes I'm not as forgiving of people, nor as patient with them. I feel like "hey, you turkey! Shape up! Don't you know that you could have some really bad news? Like significantly bad news...like, maybe you have cancer?"

I think I suffer idiots much less than I used to. I also know that I have been the idiot to others.

Sometimes having cancer can make us angry. Sometimes it just curls us up and toasts us on the inside. Sometimes it makes you sit and say "why me?"

This gold iris is for a survivor I know. Someone who has taken it up to spread some good to others who have come her way. Recently, someone on the art quilt message board I follow said that she got tuition to go to a seminar for art quilters. Sometimes these classes can be costly. While the tuition may have been offset by the group, she still had to get transportation to the seminar, cover her room and board and also get the supplies she would need. She put on the message board that she was selling some of her work and "stuff" so that she could raise the money to go. Notice, she didn't ask for a hand-out, just a hand up and was taking the initiative.

One of the members of the board, who I happen to know is a survivor, helped this woman out. She didn't have to. She just spread some good feelings, or Karma or whatever and stepped in.

While stuff may happen, and it can be pretty awful to us, we can also take the stuff and shove it....and take the oportunity to do good. Just think of what the world would be like if everyone, survivor or no, took this viewpoint. I believe in random acts of kindness. Please, God, just help me to keep that in mind when I'm ready to blow my stack.

Shoshanna, this one's for you!

Wednesday, April 29, 2009

To Everyone Else, You are Someone else


It has happened again. I just got word that another friend has been diagnosed with breast cancer.....well, at least it looks like breast cancer. She's due to have a biopsy soon. I found out in an email that she sent out. At the last part of the email, she commented "I have never smoked, never was on the pill, I breast fed all three babies and there is no breast cancer in my family."

How well I know that sentiment. We do everything right. In my case, I only had one baby who I breast fed, and I also was a vegetarian for about 4 years. I was active, I wasn't over weight (then). I biked like a fiend.....and still I got breast cancer.

You're sort of stunned. There is an aspect of "why me?" In my case, I didn't know I was supposed to be doing self breast exams...I was in my 30s. I didn't think you had to worry about that until you were in your late 40s at the earliest.

Dumb-butts abound. I remember someone saying "Well, it must have been something you did." Yeah. Right. Tell me what it is so I can scream it from the mountain tops and let everyone know what to avoid.

The bottom line is this: anyone can get breast cancer. Even men. In April of 1998, I painted this picture which is entitled "To Everyone Else, You are Someone Else." It is a title with a double meaning. My first intention was to indicate to all women, that the thought that "It's not going to happen to me, it is going to happen to someone else" is entirely incorrect because to EVERYONE else YOU are the someone else.

The majority of breast cancer diagnosis happens to women who don't have breast cancer in their families. It often just strikes out of the blue. I used to get angry at doctors who kept on warning women who had it in their families to be careful. Well, heck, we ALL have to be on guard because most of the cases are not hereditary and if they are, then those women have a little warning that they have to be careful. I had no clue. Getting cancer was the last thing on my mind.

The other aspect is that we are all something to others. Cancer touches many who are not directly related. Around the image in the center is all sorts of relationships...familial, as well as occupations, most of what I wrote are occupations typically occupied by women, but not necessarily so. Breast cancer can touch your mother, your hygienist, your teacher your....fill in the blank.

This particular painting was done for the Susan G. Komen Art for the Cure and won a prize in the New Britain Art for the Cure in 1998, I think it took curator's choice. It is not a comfortable image to look at....and yes, I took some design licenses....I put a second "arm rest" to make a cruciform figure, even though for a unilateral mastectomy you only have one. In addition, for me, I didn't have an axillary this time as I was having a mastectomy after a lumpectomy on the same side, but I got the idea from my experience. The greenish hair cap, the "donut" pillow forming a halo...all of that is what I had.

My daughter hates it. I love the color of the background....Alizarin Crimson which reminded me of the same color of CAF (the red is the Adriamycin). I don't mind that it is uncomfortable. It is a piece which is making a statement, and sometimes those pieces aren't pretty. Sometimes those pieces make you take action. At least I hope so.

Sometimes I think that that red of the Alizarin Crimson should indicate anger...anger that would make us all stamp out breast cancer and make sure that every women gets regular mammograms and takes care of themselves....and we need to take care of those who can't take care of themselves and help them through this journey which brings new discoveries....not all of them pleasant.

Monday, April 20, 2009

No Black Allowed


Recently, I had to go to a funeral. My god-mother had died from heart issues at 80 years of age. She had had many blows in her life, but she was always loving and strong.

All of my usual funeral clothes were ...too tight. I usually wear bright, clear colors, peaches, turquoises, purples, red. None of this seemed quite appropriate for a funeral in the midwest amongst people who wouldn't remember me or barely knew me.

All of this brought back some memories of when I was first diagnosed with cancer. I had only been married for three years. I was in Connecticut, which never felt quite comfortable. The thought that I might die and be buried among people I had only had short association with in a part of the country which I didn't love as much as my native Michigan, left me cold. I soon found that that worry wasn't a big one.....my husband's family is Cuban and at least among his family, preparing for death isn't common. In my family, when the first person dies, a whole plot is purchased. So.....since no plot was purchased, I could be buried where ever I wanted, and if I was lucky, there were still spots available in the Broberg lot in Athens, MI or in Augusta, MI.

As it turned out...I needn't have worried. It did bring to mind, however, how much easier it would be if we all made it clear what we wanted to have done at our funeral before times. Cheap casket, or cremation please, whichever is cheaper...and have a BIG party instead.

I am still amused at how your mind tends to flit to such things. But, here I was. Kohls is the only place in town to get clothing, and I didn't have enough time to go elsewhere. As I have mentioned before, I don't wear black. Most of the clothes in Kohls were black, or looked somewhat like Omar the tent maker had designed them, or they were for svelt young things which when put on my body looked like a psycopath's idea of camoflaging a female tank...or that I was pregnant....or all of the above.

I was snarling in the aisles. My daughter was with me....and said "Why do you have to wear dark colors anyway?" I explained that usually somber colors were in order as a token of respect, but that it was pretty outmoded these days anyway. I didn't much care for the concept because I felt that funerals should be a celebration of life, and I wanted it to be a big party.

She said, "I'll make a note of it. On your funeral notices will be the line : No Black allowed."

Wednesday, April 15, 2009

Learning to Say "Yes" in English this time!


Hmmm...very very interesting...seeing my words in Hindi!

My diagnosis with stage IV recurrence of breast cancer and the experience was entirely different from the first time I had breast cancer, even though it was only 4 1/2 years earlier.

The first time, I was a new mom, I had recently left my position at the museum and had become a free-lance curatorial consultant. I had only moved to Meriden, CT only three years before and didn't know many people.

The second time around, I had been active in church, I had been involved with the Susan G. Komen Race, as well as the American Cancer Society's Relay for Life. I am used to public speaking and had often been called upon to talk about the cancer experience and to encourage young women to do self-breast exams and to follow up with anything which would cause alarm.

I had started a very large neighborhood association with two other women and was very well known in the community. When I was diagnosed the second time, I felt like I had become the Breast Cancer Posterchild. Here I was, young, relatively good looking, reasonably thin, with an extremely photogenic 4 year old daughter. Needless to say, I was featured in several newspaper spreads on both the Komen Race in New Britain as well as the Relay for life in Meriden as I participated in both, even though I was going through chemotherapy.

I had lots more friends and friends who were available during the day time. The first time I had cancer, I drove myself to chemotherapy appointments and back. I scrounged to people to help me look after my daughter when I was sick. The second time, lots and lots of people offered to help. I had friends bringing food, friends driving me to appointments, and lots of people who offered to look after my daughter for me when I was at appointments (which never seemed to end), tests, or getting treatment.

It was humbling. Here I was, better able to take care of myself than I had been earlier because Taxol didn't make me as sick as the CAF treatment did. Yet, people were offering help in anything I needed. People I didn't know were sending me notes and calling me to offer their prayers.

I learned a very important lession. Leaning to say yes, even if I didn't think I needed the help. All of these people cared for me, and wanted to participate in anyway they could to help me get better. Sometimes, learning to say yes is harder than doing it on your own....and saying yes, even if you don't think you need it is an important gift to the giver.

लीर्निंग तो से Yes


थिस इस रेअल्ली विएर्द...आईटी', इ'म व्रितिंग इन हिन्दी....नोट कुइते वहत इ एक्सपेक्टेड।। ह्म्म्म।

व्हेन इ वास दिअग्नोसेद विथ कैंसर थे फर्स्ट टाइम, इ वास फैर्ली अलोने इन देअलिंग विथ आईटी। इ हद स्पेंट मोस्ट ऑफ़ माय अदुल्ट लाइफ वोर्किंग इन अ म्यूज़ियम व्हिच हद वैरी लिटिल एम्प्लोयीस। इ वास मर्रिएद फैर्ली लेट, एंड मोवेद तो अ न्यू तोवन, एंड हद ओनली लिवेद तेरे फॉर ३ येअर्स बेफोरे हविंग अ बेबी एंड लीविंग थे वर्क फाॅर्स। मोस्ट ऑफ़ माय फ्रिएंड्स वोर्केद। इ दिदं'टी क्नोव मानी पीपुल इन थे तोवन।

थे सेकंड टाइम इ हद कैंसर, आईटी वास मच दिफ्फेरेंत। माय दौघतेर हद बीन थ्रौघ अ कपल ऑफ़ येअर्स ऑफ़ प्रे-स्कूल। इ वास एक्टिव इन थे चर्च, एंड इ हद स्टार्टेड अ निघ्बोर्हूद असोसिएशन (व्हिच वास ह्यूज) विथ तवो ओथेर वूमेन। इ क्नेव लोटस ऑफ़ पीपुल।

इ हद अल्सो बेकोमे वहत इ कॉल, थे कैंसर कुईं। इ वास पिच्केद उप बी थे लोकल चप्टर ऑफ़ थे अमेरिकन कैंसर असोसिएशन तो स्पेअक अत थे रेले फॉर लाइफ, एंड सिंस इ वास उसेद तो पब्लिक स्पेअकिंग, इ वास ओफ्तें कॉल्ड उपों तो तलक अबाउट हविंग कैंसर। ऑफ़ कोर्स, हविंग अ डार्लिंग ४ इयर ओल्ड दौघतेर, एंड बीइंग यौंग मेड में अन ओब्विओउस परसों तो कॉल उपों तो स्पेअक अत बेफोरे लोकल ग्रौप्स, तो हवे इन्तेर्विएव्स फॉर थे नेवसपपेर एंड अल सोर्ट्स ऑफ़ थिंग्स। लोटस ऑफ़ पीपुल हद हेअर्द ऑफ़ में, एंड क्नेव वहत दीरे स्त्रैघ्ट्स इ वास इन व्हेन इ वास दिअग्नोसेद थे सेकंड टाइम।

थे फर्स्ट टाइम इ हद कैंसर, इ द्रोवे म्य्सेल्फ़ तो चेमो अप्पोंत्मेंट्स एंड द्रोवे म्य्सेल्फ़ बेक होम। थे सेकंड टाइम, इ हद लोटस ऑफ़ पीपुल व्हो वेरे ओफ्फेरिंग तो ड्राइव में तो थे अप्पोंत्मेंट्स, और तो ब्रिंग में फ़ूड, और तो हेल्प टेक केयर ऑफ़ माय दौघतेर व्हेन इ हद अप्पोंत्मेंट्स।

अत फर्स्ट, इ दिदं'टी कुइते क्नोव वहत तो से। आफ्टर अल, इ हद मनागेद थे फर्स्ट टाइम अरौंद विथ वैरी लिटिल हेल्प, एंड थिस टाइम, थे चेमोठेराप्य वास सो मच एअसिएर। इ दिदं'टी गेट सिक्क, इ जुस्त गोत सौर एंड जुम्प्य।

आईटी टूक में अ व्हिले तो रेअलिज़े ठाट एवें थौघ इ दिदं'टी रेअल्ली नीद हेल्प, इ नीदेद तो एक्सेप्ट थे हेल्प व्हिच वास ओफ्फेरेड। बी दोंग सो, इ हेल्पेद ओथेर पीपुल व्हो वेरऐ अत अ लॉस विथ माय कैंसर, एंड नीदेद तो पर्तिसिपते इन मकिंग में वेल अगं। थिस वास अ रेवालेशन तो में।

इ ऍम ग्रातेफुल फॉर ठेस पीपुल व्हो काम तो में तो हेल्प। इ ऍम स्टील ग्रातेफुल फॉर ठिर प्रयेर्स एंड ठिर कंद ओफ्फेर्स। इ ऍम अल्सो ग्रातेफुल तो रेअलिज़े ठाट सोमेतिमेस आईटी इस अ गुड थिंग तो से "एस" एवें व्हेन यू दोन'टी थिंक यू नीद थे हेल्प बेकाउसे आईटी शरेस थे बुर्दें एंड ओफ्तें हेल्प्स थे परसों व्हो इस ओफ्फेरिंग।