May 3 – I forgot to explain just why they are radiating such a large area. Minor detail! To go back in time to 2003 – that tumor in my left breast was a large, soft mass that was too big for a lumpectomy so since I had to have a mastectomy anyway I chose to have a bilateral hoping to prevent a recurrence in my right breast (that part worked just fine!). They removed nine lymph nodes from under my left arm and all were clear as were the margins around the tumor site. Fast forward to 2005. New tumor in left breast tissue that was left from original mastectomy and when the new tumor was removed both it and one lymph node that was attached to it contained cancer cells. Surgeon went back in a week later and removed more tissue from that area and that tissue was all clear. Had a PET scan in November and that showed all clear. Forward on to 2006 present time. Since the original tumor was large and since the recurrence included one lymph node that had cancer cells there is the possibility that microscopic cells were still present that would not show up on tests (that is what we have been dealing with since the surgeries in October and November, not actual cancer) and that is why the aggressive chemo and radiation. Dr. D. (let’s call him RO for Radiation Oncologist as my endocrinologist is also a Dr. D!) is covering my lymphatic system around the tumor sites as well as the sites themselves with this treatment.
I was upset yesterday over the size of the area. I had expected just the latest tumor site and maybe the first site but I had no idea it would cover from my collarbone and shoulder down to under my left breast. That was a big, unpleasant surprise. Lucky that they were all nice people and gave me compliments on my hair and boobs – flattery will get me every time!
Also the nurse told me about why they are so careful about which lotions you put on your skin. She said the are concerned with fragrance, alcohol and metal. Metal????????? She said that metal is a part of a lot of lotions. I know they are using metals in make-up, just never thought about metals in lotions. Look at the interesting stuff I am learning!
May 4 – If I could kill an imaginary persona I would gladly do so! Leg and Foot Cramp Lucinda Faye is rapidly escalating from an evil witch to some sort of demon from Hell! For three whole days I only had an occasional twinge and thought that she finally was on her way out the door. Last night my left foot cramped during dinner, had to put my plate down and try to work it out, and then she had the audacity to stay around most of the evening in a dull, crampy, achy way. Went to bed (actually very apprehensive about lying down prone as that is when she is sure to attack!) and sure enough she grabbed my foot enough to make me whimper and then she let off?????????????!!!!!!!!!!!!!!!!! I fully expected to be up during the night trying to sleep in the recliner but lo and behold – I slept through the night! I am so confused by her. Is she trying to make me crazy??????? You would think that if I created her I could “do away with her” but she is very tricky and very resilient! Sneaky, mean, evil, witchy, demon from Hell – pretty much sums up her personality! I had backed off on the banana consumption as they seemed to be going away and it has been 22 days since my last chemo treatment. Back to two bananas a day plus whatever extra potassium I can eat. I like bananas okay but not so fond of two a day! By the way, my plants love it – the banana peels that is. I toss the whole peel at the base of whichever outdoor plant is the day’s choice and they are all looking very healthy! A friend told me she does that and doesn’t feed her outdoor plants anything else! I had lovely roses not long ago, big blooms and lots of them so it looks like it works. Just thought Greta Gardener would pass that gardening tidbit along!
Seems I have a new persona to add to the mix, Apprehensive Annie. Today is the Simulation Day. This is the process that involves taking the CAT scan films that will be used to plan my radiation treatment so that the area to be treated is precisely located and marked. I know that all they are going to do today is to take the CAT scan (no injection of crappy stuff in my veins thank heavens!), measure to make the protective “mold/shield” and place my tattoos. Did I mention I will be getting three permanent tattoo dots that will be used to line everything up each time I have a treatment? Maybe after I am done I will have roses or something tattooed to incorporate them! Seriously, the doctor told me that there would be three about the size of a freckle or smaller. I can’t imagine that would hurt so I am not expecting any pain, I guess it is just the feeling of beginning yet another treatment on top of all the rest. A bit daunting. I am trying to keep Apprehensive Annie calm but I can feel her fussing at the back of my head! I wonder if I get to keep the mold/shield? I could turn it into a piece of art for my garden!
Harold installed all the copper tubing and thermostat wires for the air conditioning yesterday. Looks impressive! My job was to help pull them all through the long tube (I think he called it a “chase”) that is encased in the concrete slab and to photograph steps that would get covered over in case the inspector wants to see them since Harold is doing it himself and not the air conditioner company.
Jen is having a Cinco de Mayo Party tomorrow night and I am going to go help for a bit with the food and set-up. I’ll stay for a while and then leave since having your mother there could put a serious cramp in your style! She first was going to have a few friends over and now it has grown considerably!
May 6 – Okay, I have been “fitted” and tattooed for my radiation treatments! First one is next Tuesday. This is what happens. I changed into a hospital gown, (got to keep my jeans and shoes on) with the opening in the back. That is so you can keep partially covered during all the “fitting.” The tech placed a loose bag of what seemed like small Styrofoam pellets where my head would be on the CAT scan table. The bag has a control that inflates it. When she got it arranged to her satisfaction she had me lie down on the table with my head on the bag turned to the right and with my left arm placed above my head. She then bunched up the pellets around the side of my face, around my left arm and around my left hand creating a hand hold for me to hold on to. At some point she inflated it and it filled with what seemed like expanding foam but I really didn’t feel anything so am not sure just when that happened. I thought this thing was to keep me still during the CAT scan. Then she “arranged” me back and forth on the table until she was satisfied when I lined up with the green laser beams that ran vertically and horizontally. Harold uses a laser level with the same sort of beam when he does construction! She told me the doctor would be in shortly to mark where he wanted the treatment to cover. He came in, said “Hello young lady” drew some marks on my body with a magic marker and left. His was green and after two days I still have green marks! Then the tech drew all over me in turquoise (her marks are gone now) and then she taped down wires all around the outer perimeters of the area that would receive the radiation. Then in the machine and out of the machine – in and out a few more times and then she was ready. Had to be still for about ten to fifteen minutes while the machine moved me slowly into it as it took photos. It was an open donut so not scary at all. I began to count each round. Eight whirrs spinning around me one way, a pause and then eight whirrs back the other way, over and over. Kind of hypnotic after a while! Then the machine stops and out I come. She says to lie still for a bit more while she does the tattoos. I asked if it hurt and she asked if I had ever had a needle biopsy. I about croaked because that HURT! She then said it was nothing like that only a small prick. Hmmmmmpppfff! About the time my adrenalin levels came down she was back with a handful of needles! She stuck me five times, three straight down my chest and one on each side of my chest area about half way between under my arm and my waist. Thought it would be three and got two more for the same price! After she stuck me she poured on the tattoo stuff. Only the first one hurt, at the top of my breastbone, the rest were just pricks like she said. Then she removed all the wires and said I was done. Done? What about my lead shield to protect me? Well, I heard all those words on Tuesday but apparently they were not all in the same sentence! She said the radiation machine creates its own shields based on the info from the CAT scan and the instructions from the Dosimitrist and Radiation Physicist. The bag I was lying in will be made into a mold so that I lie in the same exact place each time and I even have a hand hold. When I go Tuesday I get a card to scan when I come in that is tied into my particular radiation data. When I changed back into my regular clothes I looked at my chest in the mirror and it looked like someone had been playing some sort of game there! Green and turquoise ink, a bit of red seeping out of the tattoo places and smeared back ink around each of the tattoo sites! Lovely! The tattoos are very small, just a small dark dot, however……………..if I ever decide to wear a low cut gown that slits to my waist, someone will get the urge to play connect the dots as three of them line right up the middle of my chest!
Today, Saturday, three of the dots are a bit red, they are tattoos after all, but none of them hurt at all. A new persona! Tattooed Tatiana!
Got another new wig yesterday, (now I have five new ones, well six if you count the extra Fiery Fiona!) and I think I will call her Jazzy Jasmin! She is short and spiky of course, is dark brownish red and has clumps/strips of really red hair at the crown. A bit longer on the sides and flipped up in the back. I MUST get these new girls photographed!
Jen’s Cinco de Mayo party was great! I was only going to stay for an hour or so and ended up leaving around eleven! When I saw the time I knew it was time to bow out gracefully! Like I said before, having your mother there can put a serious cramp in your style!
I am saddened for the situations of two of my good friends. One has been battling cancer for over a year and has just been moved to a hospice. The other has just found out she has Non-Hodgkin’s lymphoma. Her prognosis is good, it is just that she is beginning her battle and has a long way to go. I hate cancer in any way shape or form! Please, oh please, find a cure.
May 9 – Today is the day I begin the radiation treatments and I am trying not to be Nervous Nellie. Lordy, I want all of this to be over!!!!!!!!!!!!!!!!! Luckily I have a ton of work to do so I have been using that to try and not think about it. I even know that it will not hurt today and that it is too early to feel any side effects so I guess it is just the fear of the unknown trying to get a foothold here! I really don’t want to do this!
Who shall I be today? Stylish Stella? Jazzy Jasmine or stick with Fiery Fiona to be safe?
Inspection time today! They will either pass or fail all Harold’s work on getting ready for the air conditioning. If it passes they will be installing the units on Friday. If it fails he will correct it and try again. Luckily if you call for an inspection before midnight the night before they will do the inspection the next day unless something unusual comes up.
Later that day…………….
Aaaaarrrrrggggghhhh!!!!!!!!!!!!!!!!!!! I got all the way to the treatment center with my nerves finally in check and………………………..my appointment is next Tuesday! The tech told me Thursday she would see me on Tuesday and I just assumed (and we all know what that means!) that it was today. I pulled out my appointment card and sure enough it says the 16th! I barely got out the door when I started to cry. Got to my car and just sat there for a while leaking tears. Now I have to gear up AGAIN in a week! It is never a good sign when the receptionist says “Hello, what are you doing here today?” The nurse came out and they were chatting about my wigs, I chose Stylish Stella for today, and they were being kind but I just wanted out of there!
This will tell you the state of my nerves after leaving the Cancer Center... I had to go to the grocery store before I went home and I was standing at the deli counter and a lady said, “I love your hair!” and I said, “Thank you.” And she said “Wow!” and I just looked at her. You know that normally I would rise to the occasion and tell her the whole story and that it was a wig and where she could get one of her own. But all I could manage was one, “Thank you.”
I was just complaining that I really could have used more time this week as I have major deadlines. Now I am complaining that I have extra time this week! Am I turning into “She Who Cannot Be Pleased?” I mean I have to get a grip here!
I am fine now, just very annoyed with myself for not checking the date. I just realized I have a new problem, I have a Herceptin treatment next Tuesday at 10:00 and it takes an hour and a half and I am supposed to be to Radiation for my treatment at 11:45! They are next door to one another but that might be cutting it a bit close, especially if I don’t get in right at ten! Good grief! Now I will have to call in the morning and straighten that all out! They are going to think I don’t have a lick of sense!
By the way, Harold passed his inspection so we will get our air handler and compressor on Friday! They can’t run them as we still don’t have electricity but they will be installed and ready to go!
Guess what? I think I scared that evil Lucinda Faye when I talked about doing her in the other day. No bad cramps for days now, just a twinge every once in a while to remind me she is still here. Hands and feet still a bit numb. Noticed my hands these past few days for the first time. I had to paint some of my line drawings with detailed linework and noticed that my hand was not as steady as it usually is with the long liner brush I use. I had no problem drawing the designs but a pencil is easier to control than a paintbrush for fine detail work. It came out just fine but I had to really concentrate. Be glad when that little side effect goes away!
Hair is very strange. It is growing, it is about ½” long (I measured!) but what is there is very dry and bristly, growing unevenly and going in every direction! Some lies down flat and will not stand up at all and some sticks straight up and will not lie down flat even with gel! Oh yea. It is still filling in so is not “full coverage” just yet. I am going through my “Wispy Wilma” phase now. I am sure this will have to be cut off a couple of times before I have real hair again. It is not like the first time when I lost all of it and it came back in curly. This is the hair that didn’t fall out that is now growing and the stuff that is filling in that had actually fallen out is a bit softer but not curly at all. I am really glad I have so many wigs! Eyebrows and eyelashes have not done anything at all as far as growing. Actually no hair but the stuff on my head is growing. It has been almost a month since my last chemo treatment! I can hardly believe that! It took about three and a half months last time before I was willing to go out anywhere without a wig. Looks like it will be the same this time but for different reasons.
May 10 – Well…lucky me. Next Tuesday I get to have the Herceptin treatment and then go right on over and have my first radiation treatment! I am not stressed right now, we’ll see how I am on Monday! Guess I will pack a lunch! My plan was to have the Herceptin treatment, go to lunch and regroup and relax and then go back for my radiation treatment. You know what they say about the best laid plans……………
I must tell you of an important milestone that happened to me today. I walked by a snake and did not lose my mind and run around babbling like I usually do! I went out to check the mail and noticed a “branch” lying on top of the hedge that is next to the sidewalk coming from our front door. As I got next to it I realized it was a very long black snake lying there sunning himself (I am sure it was a “him!”) and instead of turning into a blithering idiot I said to him, “Okay, you can just stay there in the sun and I will go around to the back to go inside.” No creepy feeling on my skin. I guess if you face cancer twice a snake is nothing. Mind you, I know that black snakes are okay and eat mice and palmetto bugs and are actually good to have in your yard so I have named him “Buster.” I knew he was around because Harold saw him last week in the courtyard. I told Harold about it when he came home and he could hardly believe my reaction! Or rather, lack of. I am actually pretty amazed myself! I wonder if Brenda Braveheart and Kerrie Kickass are now firmly lodged in my “real” persona? Hope so!
May 13 – Ending this update on a cheerful note. Sent off two magazine articles yesterday, one yet to go that is due next week, big relief, lots of work, whew! Just meandering around today doing whatever I feel like. Harold has a new job so is working today and I have the whole day to myself. Wandered around the yard and thought that even though personal things might be in turmoil the trees are green and the leaves are blowing in the fresh, cool breeze, the flowers are blooming, the butterflies, birds and squirrels are going on about their business – the cycle of life continues on. I feel fine today, just a bit tired, Lucinda Faye has only made a few half-hearted attempts at a leg cramp and I can tell she is losing confidence in her position here!
Air conditioning was installed yesterday so we can mark that off our list of things to be done for the addition. The last two days I have had friends visit that have not been here since we began construction. They were amazed at the size! Even though we tell people we added 1523 square feet, everyone sees a small room addition in their head and when they see the real thing they are floored! We love that reaction! I wish I could take a photo that showed the whole thing but that is not possible so I will continue to show sections. One of these days I must get photos of me in the wigs!
May 15 – Lovely Mother’s Day yesterday. Harold took me to breakfast then to Home Depot to but plants for my garden. And mulch! I cannot be without backup bags of mulch and I was down to just two bags! Horrors! I told Harold once that he was a lucky man as I would rather have mulch than jewelry! Worked outside the rest of the day (not bad for someone who just finished all that chemo on April 11, huh!) and then Jen came over and brought me more gardening dollars and cooked dinner and cleaned up afterwards. Jaime called and I opened her gift of books, a love we both share, and I am sure I will be posting insights from some of them as I read.
Oddly, I am not nervous today about my impending radiation treatment tomorrow. I wonder if it because it is now tacked on to my Herceptin treatment with which I am familiar? Or, have I finally gotten a grip on my runaway imagination?
I do have some quotes to share today, though, from a pamphlet I got from the Cancer Care Center Library. What a wealth of information they have there so be sure to check one out if you happen to find yourself in a Cancer Center for whatever reason. Anyway, this one is called “Hanging on to Hope Through a Serious Illness.” www.carenotes.com It is number 20612. Thought it appropriate! It is written by one man with excerpts from others tossed in. Only eight pages but WOW, some great stuff in here. It is written by a Rabbi, Hirshel Jaffe, who had never been sick in his life and then came down with leukemia and began fighting for his life. He starts off by writing the message to “Cheer Yourself” as you must learn to comfort yourself since there will be very lonely times when no one else is around to comfort you. To keep up your self-esteem and be kind to yourself. Not to feel guilty if you are too sick to do things you normally do, to not feel guilty when you are not productive (that one really hit home to me!) He counters this with the advice to not make things impossible for yourself by believing your attitude is everything (loved this as it backed up my tirade on always keeping a positive attitude!) Skipping to an excerpt from another author in the booklet, Robert Veninga from a Gift of Hope, “Survivors are people who move purposefully toward either resolution of acceptance.” I feel like I am working towards both of those things. I hope all this treatment will be the resolution of my cancer problems but accept the fact that it could recur and I will deal with it and get on with my life, “life” being the keyword here.
Aaarrrrgggghhhh!!!!!!!! Just got a call from the Radiation Tech and they have to reschedule my appointment! They do not have all the data coordinated yet and he said they are using a highly sophisticated Four Field IMRT (Intensity Modulated Radiation Therapy) Technique and it takes more to set it up. I go on Thursday instead and they will take X-rays and if they are even a millimeter off he says they will recalibrate and I will then start on Monday again with the X-rays until they are satisfied. He said they are very picky and precise (good!) and I told him I was glad that they were. However it feels like I am never going to get started on all this and you can’t finish something until you start it and I want to be finished!!!!!!! I have a whole list of questions to ask so will be adding info to the journals as I receive it.
I was going to wait to send this update out until after I had my first treatment tomorrow but now I am going to go ahead and send it since I do not know for sure when that first treatment will actually be! Making me crazy!
Of course we are back to “She Who Cannot Be Pleased” aren’t we? I was complaining about having to go from my Herceptin treatment right over to radiation and now I don’t have to do that so am I happy? No…………..I am complaining! Give me strength!
Photo of the week – Here is the courtyard that is on the opposite side of the addition from the patio that I have been showing to you. The patio and courtyard are on either side of the new den area that comes off the kitchen. To the immediate right of what you see is a space that opens off our bedroom and is accessible by sliding glass doors. The pergola that you can see is covered in wisteria and there is a bench there so I can go read or just contemplate life! Eventually the courtyard will be paved with paving stones similar to the patio and will have my statue (Birth of Venus) in place along with lighting. For now it looks like this as we still have the trench to dig for the electrical and stucco has to be applied to the walls.
Margot a.k.a. Perky Polly - Keeper of the Perky Twins, SneakymeanevilwitchydemonfromHell Leg and Foot Cramp Lucinda Faye, Greta Gardener, Apprehensive Annie, Tattooed Tatiana, Jazzy Jasmin, Nervous Nellie, Brenda Braveheart, Kerrie Kickass, Wispy Wilma and … She Who Cannot Be Pleased!
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