Before I begin this week's update I want to take a moment to remind all of you that it is okay to share this info with anyone you choose. Also to remind all of you is that there is no question too personal about my cancer, my treatment or my reconstruction for me to answer. For those of you that are new to my updates or are getting them through friends, I will be happy to answer your questions, too. You can contact me personally it you like - Margot Clark, 2921 Amroth Place, Casselberry, Florida, 32707, USA. Email - email@example.com. Phone - 407-699-5217 - Fax - 407-699-5470 - you can even contact me through my website www.margotclark.com if you lose the other info as it is easy to just remember my name!
I have been very touched by those of you that have written to me with your stories of sharing the updates. Soooooooooo important to get the word out and you are all doing a fine job! Even if you have no one to share the info with, you now know and that is equally important to me! I just cannot tell you how important friends and family have become to me. Talk about taking people for granted - never again - could not have gotten through this without all of you encouraging me and just listening to me in these updates. These are as much a release for me as they are updates for you. Thank you, dear friends, I will never forget your kindness to me through this journey.
October 25 - Hope you all had a good laugh when you visited the web addy I gave you last time! I'm sorry if any of you got scared - NOT! - I hoped to scare the pants off you! I just couldn't resist!
As you can probably tell, I am feeling good today! Boobies are a little sore at the edges (I can feel those expanders) and my chest muscle over my left one is feeling the pull but I am on the home stretch with the fills too, so I am A-okay with those little irritations. Boobs still look odd, though. Nice rounded mounds that almost match in size now (set #1), full little pouches under them (set #2) and then of course the extra set under my arms (set #3). I have very wiiiiiide boobies right now. Be glad when we condense these down to just one set! No idea what size I am because I don't really care since I am never wearing a bra again anyway! I will end up with 550cc in each side in the expanders. Not sure at the moment if the same amount gets put in the permanent implants or if it is a bit less.
Lesson time! - Myth - Breast cancer is most likely to occur in women in their 40's. Fact - Breast cancer incidence increases with age, rising sharply after age 40. About 77 percent of invasive breast cancers occur in women over age 50 (that would be me!). The average age at diagnosis is 64.
Two lessons today as they go together well. Myth - Mammography doesn't work for young women. Fact - Although breast cancer is rare in women under age 40, it can occur (my friend and co-author, Lisa, was 27). Mammography is a useful diagnostic tool for younger women, even though their dense breast tissue can make mammograms more difficult to read. Other diagnostic methods such as ultrasound can be helpful in identifying breast abnormalities in younger women. All women over 20 should have an annual breast exam by a doctor or nurse, become familiar with how their breasts normally feel and check them each month using the same technique.
October 26 - Another feel good day! Too bad the really good days are the ones where I have to stay out of the garden and out of crowds. Oh well, I have plenty to occupy me inside, maybe finally get some work done this coming week.
Lesson time! - Myth: A lump in your breast means you have breast cancer. Fact: About 80 percent of breast lumps are found to be benign (not cancer) when biopsied (removed and tested). Lumpy breasts are very common, especially in younger women and can change over the menstrual cycle. Any unusual, new or persistent breast lump, skin or nipple change should be checked promptly by a medical professional.
A second lesson again, as they go together - Myth: Many biopsies turn out not to be cancer so are unnecessary. Fact: Removal and examination of breast tissue under a microscope is the only way to determine for certain, whether or not a breast abnormality is cancer. Biopsies are generally minor outpatient hospital procedures and leave only a small scar. New, "minimally invasive" biopsies can be performed in the radiologist's office.
Sweeping off the patio today, minding my own business (with my little bald head and no make-up), when I heard voices and before I could escape inside there was Harold and a friend walking into the backyard. I stopped in mid-flight - what to do??????????? Then I thought - what the heck and turned around and greeted them both. Harold went on to explain to him about my having breast cancer and chemo and all was well. I might as well get used to it - I will be bald for quite awhile and do not want to hide out or always have something on my head. It actually feels quite nice to have the wind and sun directly on my scalp. Just think of it - quick showers, no bad hair days, no need for shampoos and conditioners - just a bit of lotion on my little bald head to keep my skin soft!
October 27 - Lesson time! Myth: If you have breast cancer, you will lose your breast. Fact: The National Cancer Institute has called breast conserving treatment "preferable" to mastectomy (removing the breast) for most women with early-stage breast cancer. The procedure includes a lumpectomy (removal of the cancer) removal and examination of the underarm lymph nodes followed by a course of daily radiation therapy. Note from me: even though my tumor in my left breast was caught early on before it had a chance to spread, it was large and aggressive and a Stage 3 on the pathology report. Not a good candidate for breast conserving procedure. I chose to have the right one removed also, because I did not want to wake up every day wondering if it was now in that one. A very personal choice to be made by the woman herself and no one else! On the lighter side, being an artist I know that if you are going to create something that it is easier to create a "set" if you create them at the same time! I also did not want one perky one and one saggy one. No thanks!
Another unveiling today - this time of my own choice. My UPS lady has been coming here for years and seen me in every state of dress and even nightgowns if I have been inspired and not bothered to have gotten dressed that day! She has been out herself since August and I realized that she didn't even know I had surgery, let alone chemo and losing my hair. So I met her at the front door and all she said was "What did you do?", not - "Are you sick?" Soooooooooo - I am getting braver every day! Felt good today but had one of my tired spells about 4:30 and had to have a nap - NOW! Actually was in a creative mood today - did some drawing and a bit of painting. Felt good!
October 28 - I am getting downright sassy with my little bald head, I think I shall call this persona Bald-headed Beatrice! Ann came today and I just put make-up on but nothing on my head! Whoo-hoo - making progress! Isn't that better than listening to me whine?????????? An interesting fact. I have rubbed and rubbed over my scalp and no hair came out this time. I still have a good bit of stubble so could tell if tiny hairs came out. Wonder why? Still have my eyebrows and eyelashes, too.
Lesson time! Myth: Treatment for breast cancer can be worse than the disease. Fact: the chemotherapy, hormonal therapy and radiation that are often recommended to treat breast cancer improve survival. New, effective drugs to control treatment's side effects help many women continue their work and home schedules during treatment. Note from me - you all now know all about chemo so know it doesn't hurt and makes me mostly really tired. Chemo increased my survival rate from 70% to 90% so was definitely worth the side effects with which I have to deal. Chemo affects each person differently but I know it doesn't hurt if you have a port installed. Lisa did not have a port and had to get it directly in the veins in her arm and she said that did hurt. Can't talk about radiation because I don't need that but have talked to others and they day the same thing - just makes you really tired and sometimes it is like you have a sunburn. I will say that I don't know how I would have kept a regular job during this time and truly admire women who do keep on working. I never know from one day to the next how I am going to feel and am so thankful I do not have that kind of pressure on me now. Lisa was not able to work either. I guess if I had to, I would have, thank heavens I had that option.
October 29 - A bit tired today, was winded by the end of my morning walk, can tell my counts are down but at least I can still go for my walk! Weather is gorgeous here, am itching to get out in my garden but am doing as I was told and am staying in to avoid infection with my immune system so low.
Lesson time! Myth: If you have breast cancer, your doctor is in charge of your treatment. Fact: You and your doctor, working together, should think through all decisions and issues involved in choosing treatment, including whether you should consider participating in a clinical trail. Each patient has a right to open communication where all her questions and needs are addressed. Note from me - I am very fortunate to have great doctors, all of whom listen to me and answer my questions. I do go prepared so as not to waste their time or mine by having my questions listed and having a copy for the doctor to read as I ask the questions so they exactly understand what it is I want to know. Someone is always with me and they also have a copy and they (this task falls to Jennifer) jot down the answers instead of me trying to listen and trying to write and making the doctor repeat his answers. Having my sister, Nurse Martha, is also a very big plus as she can tell me some of the questions to ask! She went with me in the beginning so I understood exactly want the doctors were telling me because you are a bit shell-shocked with all the news and options that are being thrown at you. If you don't have a Nurse Martha then be sure and do your homework so you find out what you want/need to know.
What news I have! Remember I told you that my web site is being redesigned? Well, Marian Jackson is the web designer and she has agreed (at no cost - this is her donation to the cause of breast cancer) to add an area that will have all the updates so you can send people there to read and print them if they want, instead of you having to copy them for others. It gets harder to handle past updates being sent out as I write more! I am so excited - I will be able to get the word out to so many more people and you know that is my mission! She has even designed a beautiful pink themed banner with one of my Shaded Wash roses for that section! It will be located under Personal on the Site Menu of my new web site so if someone is not interested and just came there to shop, they won't be hit in the face with it! I was expecting to pay for that whole thing as it has nothing to do with what I hired her to do and she said absolutely not, cancer had touched her (indirectly) all her life and it was a cause that was near and dear to her, too. People are just so wonderful and continue to amaze me!!!!!!!!!!!!!! I was excited about the new web design, now I am ecstatic! The update site is absolutely gorgeous. Marian far exceeded my expectations, the BC journals are actually their own web site, (and I will be eternally grateful to her for her kindness and expertise) and all of you get a sneak preview since you all are so special to me you deserve the first peek!
October 30- Lesson time! Changing sources of information. I am now reading the book called "Breast Cancer: Myths and Facts - What You Need to Know" published in 2001, written by S. Eva Singletary, MD, Professor of Surgery and Alice F. Judkins, RN, MS - Advanced Practice Nurse, Breast Specialist both from the famous M.D. Anderson Cancer Center in Houston. The book is very thorough, with illustrations and I am only picking out the Myths and Facts not previously covered in my previous info from the sidebars in the book. The book is available for 9.95 from PRR, Inc., 48 South Service Road, Melville, NY 11747 - 631-777-3800. Myth: Estrogens cause breast cancer. Fact: No data have shown that estrogens in birth control pills and estrogens given to women after menopause cause breast cancer. However, if breast cancer is already present, estrogen may stimulate its growth. Note from me - my tumor was not fed by estrogen at the time of surgery, it was managing just fine on its own, no longer needing the estrogen so they want me to avoid any medication containing estrogen, forever, to be on the safe side. No problem with that here!
Heartburn again last night. I say again, because this is the second time it has happened. This is not normal for me, the last time I had heartburn was when I was pregnant with Jennifer and she is now twenty-nine! It is not listed as a side effect so I am adding it to my list of questions for Dr. M next week when I go for my third (and next to last - Yea! Yippee!) chemo treatment. I know that the fast growing cells in your intestines and are zapped by the chemo, too, so am assuming at this point that is what is happening here. I also have a stray suture working its way up through the chemo port scar. It itches like crazy, finally breaks off, I think to myself - great, it is finally done and .there it is again! No infection, just irritated. Dr. M keeps telling me to leave it alone but this has been going on for about six weeks and I am tired of it! Adding this to his list, too!
Poor boobs are still a bit sore, especially the muscle across the left one. That is also the area where the nine lymph nodes were removed. I'm sure they (my boobies) will be glad when they are left alone for awhile! It occurred to me that I have never told you this about sleeping with them - when I turn to my side, either side, there is about thirty seconds for them to adjust to the new position. They hurt at the beginning but then it subsides. Wonder if it will always be like that????? Next Monday I see Dr. J for my "fill" and the right one should be done, only needs 55 more cc's. The left one maybe another "fill" after that and then we can all rest for awhile. They don't feel part of me yet - you have noticed I am sure, the "them and me" references. I may have to break down and buy a BRA (no idea what size!) over the resting period between the end of the fills and the surgery for the permanent implants to be inserted, to kind of squash all my separate boobs together until Dr. J puts the final touches on everything and makes them into just two perky ones! I'm fine in a shirt an jacket or shirt and vest but just a plain T-shirt still looks a bit bumpy!
October 31 - Halloween! No lesson today, this is a fun day! I love Halloween! I am dressing in my "usual" costume - a dead person!!!!!!!!!! I try and look as scary as possible because my goal is to scare as many kids as possible each year!!!!!!! It takes some of the kids years before they will come up to me and get the candy! Parents always being their cameras just in case this is the year! Some will come up to me and say "I'm not scared of you!" but .they make sure they stand back far enough so I can't reach them either! I have a skull mask with wild hair full of spiders that fully covers my face, there is fabric over the eye sockets (I will be protected against germs behind it, I believe, as I am actually still in my careful time), skeleton hands gloves and skeleton feet shoe covers that glow in the dark. My costume is a dusty black (looks like grave mold!), ragged, caftan like garment with a knife sticking out of my chest. I squeezed red tube acrylics around the knife "wound" and smeared it so it looks like coagulated blood and there is a huge spider crawling down my shoulder. I play really loud, scary music and there are orange lights, a red strobe light, skeletons and lighted skulls around for decoration. I sit very still with my arms crossed over my chest until the kids get "within range". I sit in the driveway where they would have to pass me to get to the front door. Then I ask them in a deep, slow voice "What do you want?" Up until then, they were not sure if I was real or a stuffed figure. Scares the pants off them- whoo-hoo! I have a huge pet rat on a leash that I can actually "walk", too. I have a green monster "hand" on a long arm that holds the candy. They have to put their arm down in the bag that the hand is holding to get their "treat" which means they have to get very close to me. When they do they step on a mat that screams and then I shoot dense fog all over them (comes out of a skulls mouth with flashing red eyes) with a remote control and that is always good for screams from the kids! I have lived here for sixteen years and always dressed in a scary way, try to add something new each year and the kids seem to love it. I know their parents get a kick out of it and the kids that finally come up after years of abstaining (don't want candy badly enough to have to come get it from me!) are very proud of themselves. I also give really out great candy - figure they deserve it after all I put them through! I give candy out to anyone who comes up in a costume, don't care how old they are - I mean I'm still dressing up and I am fifty-six! Jen usually comes over in a costume and helps liven things up - she has a pet rat, too! Nurse Martha brings her grandson so he can see what his Great Auntie Margot really looks like! Neighbors always stop by to see what's new ( a three foot tall cackling witch this year) and to check on my scared kids count!
Not too many kids this year but the ones that did come were well worth the effort. I made my quota of scared kids this year, too! Since it is Friday we went up to Wings after Trick or Treat time was over and got take-out, me dressed as Ghoulish Gertrude (or Bones as Jen calls me), Jennifer as sexy Enchantra and Harold as a devil with lighted horns and red velvet cape! Took my basket of candy to give to my friends there and with their permission I walked around and gave out candy to all the kids in the restaurant (scared some of them too so my scared kids count went up again)! Am exhausted now but it was all great fun!
I am in all my glory!
Love to all,
Margot - a.k.a. as Ghoulish Gertrude!
After reading through the updates,
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