Update 36

May 2 – This is the month that Dr. M, the oncologist, said I would probably go out without wearing my wigs. I started in April but am confident I will be wearing the “girls” for fun and convenience only, very soon. I don’t mind everyday errand stuff but still like wearing them when I get dressed up. Feel too casual, I guess, with the very short hair. That may change when I get the okay from Dr. M to “go red!”

I have been very tired lately, will check on that with the various doctors as I see everyone next week. All this travel and teaching is tiring but I also need to lose weight!!!!!!!!!! For more that just tiredness – I have high blood pressure and high cholesterol and better eating habits would help those two things immensely. Not to mention the effect of less weight for my arthritis! Now that I am back on track as far as the breast cancer, I really need to concentrate on changing my eating habits to remain healthy. I don’t want to beat cancer to die of high cholesterol! Haven’t been able to get out in my garden lately nor have I walked much so lack of exercise is probably behind my tiredness. Today though, as soon as I finish typing this I am “outta here” and into the garden for the whole day! I had a couple of people ask what that large green leafed plant was growing up the tree in my last garden photo. That is Golden Pothos, a philodendron, normally, a hanging houseplant. That is what happens when it is allowed to grow outdoors in a tropical atmosphere! I believe that is their normal size and they scale down when forced to live in a pot! When I trim the houseplant I toss the cuttings out in the garden. I have these on two other trees and growing on my back garden wall. Are you impressed????????? The stem measures about 1” in diameter and is very tough when it reaches that size.

Flavia quote that is perfect right here – “A garden, like a friend, has a way of healing our tired minds and refreshing our spirits.” I am very serious when I say I must make contact with the earth to replenish my spirits and energies. I get my right hand in that dirt and just say “aaaahhhhh” as I feel the earth’s energies flow up my arm! And no, I am not Demented Deena, try it yourself and let your mind and senses open to the experience!

Ordered the tile for the guest bathroom yesterday! Cost the earth but it will be so gorgeous! We have company coming, beginning in June so really need them to be able to use the shower. A Jacuzzi whirlpool bath is wonderful but sometimes you just want to get clean in a hurry! The lady who took care of us was very good – I went in on Friday afternoon with short, curly, graying hair and came in on Saturday with very dark spiky hair (Dramatic Drucilla) and she didn’t miss a beat and didn’t stare either. We had told her that we had been working on this bathroom for a year and I mentioned in passing that it was because I had gotten sick so she probably surmised what had happened but she was cool! When we finish the bathroom I think we will have to have a party and cram everyone in the bathroom to celebrate the event! I will definitely post a photo to mark the event!

I have come across a booklet sent to me by the place that used to do my mammograms and I found some very good info I would like to pass on to all of you. They are talking about breast self exams (BSE) and state the following – “Although cases are rare under age 35 and most common over age 50, EVERY woman is at risk from breast cancer; breast cancer cannot be prevented, only treated – and cured, if treated soon enough. Research shows that the tumors found by women practicing BSE are half the size of those discovered by doctors in non-BSE practicing women. And, the smaller a breast cancer tumor when discovered, the greater chance of effective treatment and cure. If all women would do BSE, see their doctors for regular cancer check-ups and have mammograms as recommended, 97 percent of all breast cancers could be halted before they become fatal.” Pretty sobering is it not? Please, please do this for yourself and for the people who love you and want you to remain in their lives!

I also want to include a message from the Susan G. Komen Foundation whom I support wholeheartedly – “The progress we’ve made together in the battle against breast cancer is truly amazing: women used to suffer alone, but now, those who face a breast cancer diagnosis have better information, improved screening, more treatment options, an enhanced quality of life and a vast and growing support network.” It is true, so many women have shared their stories with me and been so very supportive in my own battle with breast cancer and I did have many choices in treatment and the ability to be an active part of my treatment not just a passive victim.

May 5 – Such wonderful people I know! A friend called me yesterday who does permanent make-up on Long Island in New York and offered to do my areola tattooing for me. She is another artist so I am sure it would be very good. She was telling me how natural it looks when done properly. She suggested I forgo the whole nipple reconstruction and go with just tattooing. I did find out it has to be touched up every few years as it fades, I didn’t know that. I have been thinking about it and still think I will go the reconstruction route. I know it involves surgery and recovery but I may not need any tattooing at all with that which means I would be done with that part forever. I am also a very tactile person so I think I will be more comfortable with something that “feels” real as well as looking real. Nurse Martha had also recommended the nipple reconstruction as being the most natural looking. Remember that Nurse Martha is my sister and she worked in a plastic surgeon’s office for five years so saw every different option. Dr. J also said he thought that looked the most natural but he may be a bit biased since he is the plastic surgeon! I am just so very pleased that there are so many options available to women after having a mastectomy. It really is your choice on how you want to proceed depending on what your expectations are and what you are comfortable with being done to YOUR body.

Spent the afternoon running errands and sneaking in a bit of shopping while I was at it! I am still amazed at how much I can appreciate a little thing like shopping and running errands. Probably because I couldn’t do it for so long and now I know I can. Also, no wig! No one stared but no one commented on my hairstyle either. Usually I would get at least one comment on my wig or way before all this happened on my real hair. so, no one stares but no one wants it for their own style either! Doesn’t look dreadful, just very short. At least it is curly so I got half of my request – I guess the red part of that request will have to come out of a bottle! It does feel good to be out and about without a wig, though. I still love them but I feel such progress is being made in my recovery going without them. I guess it is the fact that I am back in the mainstream of life!

My webmaster, Marian, did a cool thing with the garden photo when she put it up on the BC journals website. She liked the statue so she included a “Click On” to enlarge and isolate just the statue. If you want to see, go to http://margotclark.com/BC [link will take you to Update 35]. Very cool! She is just amazing to keep that site for me and for any other person who wants the info. Very big kudos to her for her work on behalf of breast cancer! The count of visitors to the site was 1921 this morning! Please don’t ever stop referring people to the site. It is a very good, private way for someone to find out about what happens with breast cancer without having to actually face someone in a group. I still get emails from women asking questions and am always glad to answer. I always offer to show anyone who wants to see what a mastectomy and reconstruction looks like but do not get many takers. I think most people are too embarrassed to look but it does not bother me in the least so if I offer and you want to see – do it! It really does take the fear out of something when you can see it for yourself! I actually flex my chest muscles in front of my classes so they laugh (they can’t help themselves!) and it breaks any tension about me and the whole breast cancer issue.

Couple of Flavia quotes here, this woman is a gardener for sure:

“Breathe in the beauty of all that surrounds you. The landscapes of your dreams is always within reach.”

“Every day is a time to love and to care for the earth so that we can give back some of the wonder the world has given to us.”

“Friendships are like flowers whose seeds, if carefully nurtured, can bloom for a lifetime.”

“Every joy we feel is a celebration of life.”

And I just love this one – “Be patient heart. There are phantom dreams and paper stars I still must chase.”

Info time – Who is At High Risk for Breast Cancer? The booklet I am reading states that monthly self breast exams, exams by a healthcare professional and mammograms are essential procedures for ALL women to follow, not just women who are considered at high risk. The staggering figure that goes along with that is an estimate 70 to 75 percent of women who are diagnosed with breast cancer have no known risk factors other than being female. they do say that certain women are more likely than others to develop breast cancer and that these women should undergo professional breast cancer check-ups more frequently than the recommended average which is:

• Women over 40 to have a mammogram every year, annual clinical breast exam performed by a healthcare professional and self-breast exams monthly.
• Women age 20 –39 should have a clinical breast exam performed by a healthcare professional every three years and should perform monthly self-breast exams
  Please remember that my mentor Lisa, found hers by self-examination when she was only 27!

The risk factors for breast cancer are:

• The risk of breast cancer increases with age (Not much you can do about that one!)
• The risk is higher in:
• Women with a personal or a family history of breast cancer (I am the first in my family that we know of)
• Biopsy that confirms atypical hyperplasia
• A long menstrual history, meaning menstrual periods that started early and ended late in life (That is me – started at age 11 and ended around age 55 – last period was in February and was diagnosed with breast cancer in July)
• Recent use of oral contraceptives or post menopausal estrogens ( I had taken hormones for hot flashes for about 4 years off and on)
• Never had children or had first child after the age 30
• Consumes two or more drinks of alcohol daily
• Higher education and socioeconomic status (Wish they had gone into this one a bit more – I am just an average woman in both of those categories)

They also state that according to the American Cancer society the majority of women will have one or more of these risk factors and that most are at such a low level they do not really explain the large number of breast cancers seen in the general population. My personal feelings are that we are ingesting too many chemicals in the air we breathe and the processed foods we eat. On another page they state that additional factors which may be associated with an increased risk are pesticides and other chemical exposures alcohol consumption, induced abortion and physical inactivity and that these additional risk factors are currently under study. They go on to say that since most risk factors cannot be controlled, finding a breast cancer in its earlier stage, while it is still small and has not spread to surrounding tissue, is the only way to lower the number of deaths due to breast cancer. Finding or detecting breast cancer also increases a woman’s treatment options. When mine was detected and biopsied, it was diagnosed at a Stage 3 which is pretty serious. It had not spread to any other place but it was large and after the surgery to remove the Stage 3 tumor I was diagnosed as upper Stage 1 mainly due to the size of the tumor and that is also why I needed to have the chemo treatments. I will always wonder if I had gotten in to get my annual mammogram in January instead of finally in July, would it have made a difference in my treatment? The nasty thing had an extra six months to grow before being detected. They did tell me that due to its size, it had been growing for a while. My postponements were due to having not enough doctors in the area to read the mammograms and then to a change in insurance plans. No regrets, just a wondering on my part. Never have thought, “Why me?” I mean, why not me??????? Life happens.

May 9 – Happy Mother’s Day! I was Great Gardener and spent my day in the garden with all my lovely plants, digging in the dirt! I know I am having a good time if the creases in my arms and neck have dirt in them! Harold and Jen cooked dinner for me………oooooooo Heaven! Spent a good portion o9f my day contemplating the past year. This time last year I had breast cancer and didn’t know it. Now it is gone and I am well on my way to recovery. I am very happy to be here celebrating Mother’s Day and my daughters are thankful, too. My own mother died many years ago in 1984 of respiratory failure due to lung cancer at age 59. I turned 56 in September, don’t smoke and never have so hope that counts for something! I am happy to say that my dear mother-in-law is still with us and is nice and healthy! Just in case you are thinking I am pulling a holier-than-thou about my not smoking let me set the record straight about why I don’t smoke. As a teenager all my girlfriends smoked and I thought they looked soooooo cool! so of course I had to try, too. Never could get the hang of inhaling so just pretended to – do you think anyone knew I wasn’t inhaling??????? Yeah, right! This went on for about a month and I was at a party and caught sight of myself in a mirror with a cigarette. Well, my friends looked cool with a cigarette – I however, just looked stupid! That took care of the smoking! Pure vanity took over! See, I was Vain Vanessa way back then!

May 11 – Just back from my nine month checkup from the general surgeon, Dr. P and I am A-Okay as far as he is concerned! Yea! Tomorrow is the oncologist, Dr. M and if I get the okay on hair dye by tomorrow night I will be a redhead! I am taking Sassy Simone with me in the car so we can stop at the store on the way home from the doctor’s office! I was Dramatic Drucilla (spell check on the computer thinks this should be Dracula!) today to see Dr. P. Told the nurse that when I sat up from my exam it was her duty to see that my hair was not all weird in the back from lying down. She just laughed but she did check for me.

Interesting conversation with my doctor. I thanked him again for my great care and told him I knew how lucky I was since I talk to so many other women with breast cancer and hear their stories of how their doctors just don’t listen or belittle their fears. He said he had no plans to change the way he did things but that he knew of what I spoke from listening to other doctors and how short time is with patients. He said that was not an excuse but was just a fact and different people, doctors included, handle stress in different ways. He said he only sees the problem as getting worse. I am taking this opportunity to speak my mind. I firmly believe it is our responsibility to be sure we get proper care. Speak up! Don’t let the doctor leave until your questions are answered. If they don’t have an answer ask where you can get the information. Say to them you don’t think they are listening to you if you feel that way and insist that they do. Don’t waste their time when you are in their office. Figure on five minutes, max, and have a list of questions typed out for you and one for them so they can see the questions and answer them right then, in order. Take someone with you so they can write down the answers so you can talk. There is also strength in numbers! I believe they would be more apt to answer all the questions if there were two people there not just you and the nurse doctor, then you are outnumbered! If you don’t feel you are getting proper care – find another doctor. It is your body and when doctors and nurses are really busy I think we tend to fade into the background as “people” and are just seen as “patients.” Soap Box Sue for sure here!

Case in point – since having the lymph nodes removed from my left arm I can no longer have blood drawn from that arm and it is very hard to get it from my right arm. I know that tomorrow I will have blood drawn at the oncologist’s office. I also know I am due for blood work with my primary care doctor, too. I really, really don’t want to fight with the drawing of blood more than I have to so I sent a fax yesterday explaining the situation to my primary doctor and asked them to send a fax to Dr. M’s office with what blood tests he needed and to please fax me a copy in case it got waylaid somewhere so I would have it when I went for my appointment (also I know that if they send me a copy they have sent it to Dr. M!). I just now received my copy by fax. I feel this is very efficient and a great time saver for me and the doctors and staff because, 1. No one in the office can say they didn’t get the message as happens with phone calls requesting such things, 2. My primary doctor can take care of it at his leisure since I gave them two days (any more than that and I find it gets set aside!) and by writing it down and faxing it there is no wasted time for him and no chance of a phone message being given wrongly, 3. Dr. M is doing the blood work anyway and sending the results to my primary doctor, and 4. I only need to get the blood drawn once. Now, I did not ask “pretty please”, I just requested very politely that it be done so them not doing it was not an option! I do this a lot with referrals and such and it always works very well. Just a little helpful hint. And………..the doctors all say they appreciate it as it is more efficient! Am I now Efficient Effie?????

Must end this one now as it is turning into a booklet!

Love and good health to you all,

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