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.

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."

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।

Young Breast Cancer Survivor?????

Me when I was about 2 years old. I was just bopping over at the Health Central's Breast Cancer site...and took at look at the Young Breast Cancer Survivor area. Funny....I still feel like a young breast cancer survivor. However, in looking at these posts and the information there, I realize I don't qualify anymore, even though I was once there. I've been there, I've done that...and I'm still working on raising my daughter.

When I was first diagnosed, my daughter was about the same age as I am in this picture. However, she couldn't walk (except by holding on to my pinkie tip...she was an early and awesome crawler). When I went through chemo, it was tough. I had only left work a little more than a year earlier. My friends all worked. My family was all on the west coast. My husband's family (for the most part) lived in Florida. As I didn't get married until I was 30, and had my daughter just shy of my 33rd birthday, my husband's family in the area were all older.

Getting things taken care of was difficult. I think this was my greatest worry and my greatest struggle. We worked it so that when I got treatment, my husband stayed home that day with my daughter, and I drove myself the half-hour trip to get my chemo hits. I got the treatment on Monday morning's and was released usually at about 3:30 - 4:00 p.m . I'd drive home, eat something, and then at about 6:00 I'd start throwing up. Every hour on the hour.

The next day, I'd be in a Decadron stupor while my husband, or his aunts would come and look after my daughter. On Wednesday, I'd throw up in the morning, and then be weak, but I'd then take care of my daughter. Needless to say, we watched a lot of videos and I read her a lot of books.

When my hair started falling out, I asked my husband to shave my head. He couldn't do it, so I asked my best friend to come over. She and her husband came, and we all had dinner. We put my daughter to bed, then went out on the deck. First, Martha roughly cut my hair with scissors. She kept on saying how she felt like she was at a concentration camp. After the major whack job, she shaved it. Life felt so much better as it felt like each individual hair follicle had a headache...getting rid of the hair meant that I didn't have to worry about it falling into my food or all over the house.

The next morning when I got up, my daughter looked at me, then patted her own head...I suppose to make sure that her hair was still there. I'll never forget that perplexed look that she had.

My biggest worry was during radiation. What would I do with my daughter? I couldn't get her into a daycare for only 1 1/2 hours every day for 7 weeks. I asked the volunteer services. While I could get people to drive me to and from my appointments, which I didn't need, no one would look after my daughter, even though she was an easy child.

When I voiced this concern to the hospital social worker right after having had my surgery, her response was "You mean to tell me you can't find someone to look after her?" No. I only lived in the town I lived in for a year before she was born. My family lived far away. It was such a short time, but I was without aid.

Because of this problem, I lobbied for the hospital daycare to be opened for patients who needed help in this area. I didn't mind paying, but I needed some resource. After all the majority of the time I spent in radiation was actually traveling to and from the appointments. The actual treatment time was about 30 minutes.

As it worked out, one of the techs walked around and around the halls with my daughter pushing her doll stroller stuffed full of stuffed animals, and one Water Baby doll. I know that she brought lots of sunshine to all the other patients. You could see them smile and brighten up when they saw her. She was a happy child and very out going.

The second go around when she was 5, it was easier. There were friends from church and her pre-school. I also found a day care for the days I got treatment or had appointments.

Still, I wonder. She doesn't remember much of me reading to her. She remembers going to other people's houses and staying with them. She remembers my nurses and techs from the early treatment. She doesn't remember much of what I did with her, only what others did.

I often wonder if her hard-heartedness is a coping mechanism from my having had cancer--walling off others because she might lose them. I am fearful that she will have cancer even younger than I did.

Having more children was an issue for me. My oncologist was amazed that I never missed a period through all of my treatments, even when I had the Taxol. I managed to come through the chemo and still got pregnant....but it seems that perhaps the pregnancy spurred my recurrence. I don't know, but I do find it interesting that each time I was diagnosed was right after I had been pregnant, even though I lost the second pregnancy.

Still, I look at those fresh young faces over on the website, and all I can think is that I am no longer young, even though I am younger than many breast cancer survivors. I'm middle aged. Regardless of the fact that I went through what these women are going through now, 11 years ago...almost 12 years now, and I looked much like them, I'm sure that they would think that I have nothing at all in common with them....save that I have shared this dread disease.

Breast Cancer Side Effects: There's more to me than there ever was

Pictures of me are rare. Pictures of me online are almost non-existent, partly because I have tried to keep myself anonymous in this regard. However....for this, I will break my rule.

When I started out on the cancer trail I was fairly slender. At 5'4" tall, I weighed 135. Most people when they are told that they have cancer, and for those who are on Arimidex and other similar medications, weight gain is one of the side effects. One of the culprits is the steroids which are used to manage other side effects of chemotherapy.

Some people, however, lose weight from chemo therapy. I maintained it. After having cancer the first time, I gained weight. Not horrifically so, but maybe 20 pounds. It was after the second go round that I ballooned.

Three months after having finished chemo and shortly after finishing radiation, I had a complete hysterectomy and oophrectomy (ovaries removed). Being menopausal then, I found that weight gained didn't want to come off so easily. I know that calories in have to equal calories out. There's the rub.

We tend to toss off this as the cancer's fault. I know that the lion's share of this is my fault. Being told that you are stage 4 has a huge impact. First, there's the "Well, heck, if I'm going to die soon from this anyway, bring on the hot fudge sundaes!" The second part of it was that I was pretty mad at my husband. He couldn't handle the fact that I had a pretty strong chance of dying. I needed him to acknowledge this and because he couldn't, I was mad at him.

Now, you have to understand that I met my husband in the bicycling club. We did lots of mileage. It wasn't unusual for me at that point in my late 20s to ride 150 miles a week, sometimes more. He's also build differently than I am. He has a naturally high metabolism and has long slender bones. I'm average in my bone structure, except that I'm really short legged, long in the body, but short in the leg. So...stuffing my face with sweets (always my downfall since I was little) was a stupid way to stick it to him. Self destructive? Absolutely.

I also know that when we tend to do things like this, we are trying to fill a hole. Guilty as charged. I also find it difficult to get the exercise I need to do because the radiation really really hurt the muscles on my pelvis. It feels like I have a constant knot there, and trust me, I'm as reliable as the local meteorologist in predicting changes in weather.

It has also given me new insight....one I'd rather not have, of how our society treats people who are overweight. We are invisible. When people do notice us, there is an element of "have you no self control? Are you so undisciplined as to turn yourself into this? Why don't you take care of yourself?" Sometimes, there is just too much to take care of. We are, as a nation, prejudiced against the fat.

Right after the first go around, and also after the second go around, I did all that I could. I walked for at least an hour a day. I did step aerobics (now that was a trip....literally, imagine someone who has a hard time remembering her right from her left doing some of these Charlestons left then switch....hey, I have two rights...), I did water aerobics (and was the youngest in the class). I found it difficult to get the exercise done and still be mom and wife. So, after a while, I gave up.

I also know it is far to easy to blame the cancer and the treatment. At 11 years post therapy it is time to do something about it. Maybe now that I recognize what the issue is, I'll be able to think about it and decide not to put that piece of chocolate in my mouth....or rather, put one piece of chocolate in, not 5.

"My Cancer" and other verbage I hate

Gosh I hate this picture. For some reason, the Komen hat I got in 2003 had a problem with the brim...and it stuck out.... This was 2003...5 years after finishing chemo, and 5 years of growth on my hair. My daughter didn't let me cut it for a long time...I guess it was because she associated me having no or short hair with having cancer.

Something has been bugging me for a while. Cancer survivors tend to refer to cancer as "my cancer." I hate that. It is true, it is our cells, so therefore totally ours...but, I don't want to own it.

It is true, for anyone who has had cancer, it is so much part of our lives....but I don't want it. I don't want to claim it. I want it gone. I do not want to say "my cancer" as if I was referring to "my dog" or "my daughter." That's pretty unrealistic. What we have gone through shapes how we view things and how we react to them. We have seen battle. We have the scars. We must move forward. Peace with this enemy? I don't think so....

Another thing I hate is when people ask you "Are you in remission?" To most folks, that seems like "Are you cured?" Cured? No. Are there any discernible signs of cancer? No, but that doesn't mean I'm free....

My current oncologist has noted something. My tumor markers are usually within the normal range...but every January for some strange reason, they spike out of the normal range. However, they drop again. He commented on that. I've wondered if it has something to do with the amount of sugar I tend to eat in December, or the stress of Christmas. I suppose it doesn't matter. He usually just says "So, how are you feeling?" If I'm feeling fine, then he says not to worry.

I guess I'm getting to the point where it isn't ALWAYS on my mind. For instance, I had my annual mammogram on my remaining breast at the end of January. It was a real trip. I knew I was fighting a virus that my daughter so graciously brought home. However, they thought they saw something on the mammogram, so they sent for an ultrasound right then and there. They picked up something on the ultrasound, but I told them it was lymphatic. That sort of startled them. I told them it hurt, and it was getting more enlarged the more they poked and prodded me, and pointed out that usually BC doesn't hurt, and certainly the lumps didn't get bigger within the 2 hour time frame that they were poking and prodding me.

So I went home. Usually, I'm sent a letter shortly later telling me the results of the mamm. This time, I didn't get one. I occurred to me last night that I hadn't heard the results, so I thought I had better call my GP. Since I had my first mammogram in OH locally which was ordered by my GP, I thought that I had better keep all of my mammograms done at the same place, particularly since I had no mammograms from earlier. (Ohio State University LOST three jackets full of my mammograms, bone scans, and other tests which had been done before digital came in.....they've never found them, nor has anyone apologized for losing these records).

Since my oncologist practices at a different hospital, I have to call the GP to order them, and then make sure that the Oncologist gets copies.....sometimes they goof and they don't get sent to where they are supposed to go.

So, here it is, a full 2 months later and I call to find the results. That is certainly not someone who is too concerned....I called, they said everything was normal, so I'm test free until my next PET scan which is usually in November or Dec.

But....one thing is for certain, we must all be our own patient advocates and make sure that we follow up. I have to remind my self that I have to keep track of where I am because no one else is going to do it.