June 8 – Herceptin side effects are all gone! Up at 5:15, fixed Harold’s lunch, went for my walk, worked in the garden for an hour and now am here, writing before I begin my work day.
Sad news yesterday. Another close friend diagnosed with breast cancer. Please let them find a cure soon! My friend Jasmin called me the other day to let me know her Avon Walk for Breast Cancer in Chicago raised 8.5 million dollars! Each day I wake up and think, “Maybe today will be the day they find a cure.”
I recently read a really scary statistic. A huge percentage of women who go through breast cancer and treatment fail to get regular check-ups after five years. Do they think it can’t come back after that time? It can return at any time and once you have had it your chances increase for a recurrence. Please pass that info on to anyone you hear who thinks that five years cancer free means they are cured. I see people every day who prove otherwise. Each year you are cancer free increases your chances of survival but it does not mean you are cured forever. Those yearly check-ups save lives! A recurrence caught early is just as good as catching the first tumor early. Here is a very harsh statement and I hope it scares you, it is meant to – “You go for a check-up and you live or at least live longer – you wait – you die.”
June 9 – Another week over with, three down and five more to go. People are still surprised I have to go every day. They assume it is a weekly treatment. Nope. Every single day, Monday through Friday with weekends and holidays off. Skin on my collarbone area just the slightest bit irritated. Feels like I was out in the sun too long, not a real sunburn, just too much sun.
Found out something interesting today. I have to protect my back, too, from the sun. Yes, my back! Especially where it is in line with my collarbone as the radiation comes out the back of my body!!!!!!!!!!!!!!!!! The collarbone area especially, as it is thinner there at my shoulder. Well, I can tell you that never occurred to me! I don’t actually know where I thought it stopped inside but I did think it was contained inside my body. I will find out on Monday from the doctor just how far down and out the radiation goes. Now I am wondering if it burns tissue on the inside like it does skin. Advised again to avoid the sun like the plague! New persona to go along with Vanessa Vampire – Shady Sara. Time to start slinking from shady area to shady area when I am outdoors! Pretty soon I will be gardening by the streetlights! As it is I am out there before the sun comes up, just as soon as it is light enough for me to see what I am doing. Greta Gardener will find a way!
All in all, I feel really good and that makes my Happy Holly!
June 13 – Week four, Day 2. Saw the radiation oncologist yesterday and have more facts to report. The radiation comes out my back everywhere it goes in the front! I need to put the Biafine Cream there, too now. Still a bit unnerving to think about that! So it goes through all my tissue and bones! I had read that radiation can permanently affect bone tissue and can affect the body’s ability to heal itself, so I asked him if that were true and he said, “yes, in high doses,” and I asked him if I was getting high doses (I know I get a LOT of them in different areas but wasn’t sure if they were considered high) and he said yes and that my ribs would be affected and that I would now be susceptible to rib fractures for the rest of my life. Okay then. I did ask, didn’t I? I also asked if I would be seeing him again after radiation was done and he said “Yes, you will be seeing me for a long, long time.” Okay then, again. Good thing I like him!
The nurse also told me that you can have chest muscle pain for a long time after treatment is over as your chest muscles can get inflamed. Will I have to rename Perky Polly to Red Hot Perky Polly? Hope that does not happen.
As you can tell by my updates, radiation is not as easy as I thought it would be. People say “I had radiation” just like they said “I had chemo” and like chemo, there seems to be a lot more to radiation treatment than I had imagined. Again, reading about it you just get technical stuff but none of the things I am learning as I go through this on a day to day basis.
I am not unhappy or even upset by this latest news. Maybe I am becoming immune! I really think it is because I realize that I can still enjoy my life and I really feel that I will be around to see my grandchildren grow up, to enjoy my family and to grow as an artist and if my “new, new, normal” requires even more change, then so be it. It is enough to make my life rich and rewarding. I think I finally really realized it last night. It was raining hard and Harold was still at work so I was here alone with the cats. I was contemplating life. I had spoken to a gentle lady that afternoon while we were both waiting for treatment. We only spoke for about ten minutes but she made quite an impression on me. I gathered from the way she talked that her prognosis was not all that great. She said two things that really stuck with me. One was that we all are going to live and die, some of us sooner than others.The second thing was that no one guaranteed us an existence free from sickness and pain. She also spoke of living each day one at a time. Now, I have heard those things a million times but………………….coming from this soft-spoken, gentle woman, talking about her nine children and grandchildren, it made it very personal and I could actually see all of it in her eyes as she was talking to me. She said one more thing that I have typed up in fancy font and placed where I can see it – “Didn’t nobody ever say it was gonna be easy.” She was so at peace with herself and her situation. So, that evening as I sat watching the rain I was thinking to myself that maybe I still hadn’t “gotten it” as to what I was supposed to be doing with my life after getting two chances at living it longer. I have felt this restless urging inside like something was trying to get my attention. Was I supposed to be doing something more important with my life than what I am doing now? I was watching the leaves in the trees (I planted every single thing on our property) blow around with the wind and rain and seeing my garden through a mist of rain while sitting where I can see the new studio. All of a sudden I just knew! I am supposed to appreciate and live with the gifts I was born with. It is okay that I just create my own beautiful place in the sun working with living things and encouraging birds and squirrels (and even the occasional snake!) into that world. To share that world with friends and family. I am supposed to create art. That is who and what I am. And it is enough. That is the key word. Enough. Everything settled into place and I was filled to the brim with joy and relief. I do realize that all sounds a bit hokey but I swear to you every word is the absolute truth. It is like everything just drained out of me and was replaced by the new feelings. I am sure I will not be going around in a permanent state of euphoria but hopefully it is enough to guide me through the rest of my life. I need to print the above paragraph and carry it around with me to remind me on days that are not so good.
Skin still okay. Still just slightly pink on my collarbone. I noticed after my shower yesterday when my skin dried it was a bit dry feeling in that area before I put on the cream. I bought a shirt that was recommended to me by the radiation tech. It is by far the ugliest and most expensive shirt I have ever purchased! It is lime green, a man’s medium, collared, short sleeved, back and side vented fishing shirt made by Columbia for $50.00! You are probably asking yourself why I would do such a thing. Well, it is for my gardening and the reason it that it has an SPF rating of 30! Mind you, I only bought one and it will have to last through multiple washings but the doctor was very pleased to hear that I wear it and SPF 30 sun block while outside in the shade doing my gardening. I had to go to a store that sells “wilderness” clothing. I can tell you I was the only woman in the store with make-up on and rhinestones on her T-shirt! I finally told the salesman why I wanted the shirt because I could tell he was sure I was in the wrong store! Then he tried to get me to buy a long sleeved shirt and roll up the sleeves because that would offer even more protection. I told him I did not want to die of heat stroke! This is Florida and it is hot! Now picture this. When I get ready to garden I have on a hat the size of an umbrella, the big ole’ ugly lime green shirt buttoned up to my neck with the collar up (did I mention the shirt was ugly?) over black leggings with paint marks all over them and big ole’ honkin’ white tennis shoes on my short little body! I look a bit like an odd garden gnome!
June 14 – Day three, week four. Getting a bit tired now by late afternoon. Reminds me of the “chemo tired” as my whole body and mind are tired. I know that radiation only affects the cells and tissue that it actually hits and not everywhere in your body like chemo does, but the tiredness still feels the same. Easy then, to just sit and do absolutely nothing!
Eyebrows are in! No eyebrow pencil needed anymore! Still plucking stray hairs but it seems they finally remembered their true growth pattern. Hurray! Eyelashes still a bit “horsy” but they are growing.
June 17 – End of week four. Halfway through! Yea! Nineteen treatments down, seventeen to go. Nine more at the dosage I am receiving now, then I start the “boost” treatments where just the two tumor areas are treated. The tech checked for me yesterday and the doctor had scheduled twenty-eight treatments rather than the thirty I originally thought! Hurray! I get two days off my total!
Also found out that the radiation treatment is half-way up my neck! How do I miss these things?????????????? No redness or discomfort there, though.
Recap so far – still only red on my collarbone area, feels like a regular sunburn if I forget and rub my skin in that area. I slather the Biafine cream on three times a day, shower with lukewarm water and don’t let the water actually hit that area, pat my skin dry, stay out of the sun and when I am outside slinking around from shade patch to shade patch I have SPF 30 sun block on any area receiving radiation not covered by the ugly green SPF 30 shirt (and of course my umbrella hat!). I still have the nine treatments left to the upper areas so may still have more burning but so far, so good. No deodorant or antiperspirant at all to the treated area (will be glad when I can use deodorant again – this IS Florida and I do not get a “soft sheen” on my skin – I sweat like a pig!) A bit tired in the afternoons but I can still function if I have to – if I don’t have to, then I nap or just rest. If I can just avoid any of the long term side effects I will be A-okay!
Had a bit of a concern that got cleared up yesterday along with an interesting fact. My left eye had been bothering me for more than a week, a sharp pain like too much light in your eye and just generally sore after about four days so I made an appointment with my ophthalmologist to have it checked out since that is not normal. I had the lens replaced in that eye in the late nineties and was concerned that something had happened to the lens or that maybe……………..something dreadful was occurring in my brain. You cannot help but worry when something out of the ordinary happens and you have had cancer twice. Actually it would be very foolish of me to ignore anything out of the ordinary for the rest of my life! Anyway, turns out that the surface of my eye was inflamed and he gave me drops to put in for the next two weeks. Said it could be from the chemo, could be from radiation (both tend to dehydrate you) and I also have to use sterile tears every day for dryness until I am done in November. The interesting thing was that I was the second woman that morning with the same set of circumstances complaining of the very same thing! She was also concerned it might be a brain tumor. The doctor didn’t go into detail so I don’t know if she had a recurrence or a lens replacement but she was going through chemo and radiation for breast cancer. Found that interesting and so did he. Glad to hear someone else got something odd checked out and didn’t just ignore it and wait (and hope) for it to go away.
June 18 – Father’s Day. Nice day, (no treatment!) quiet, just Jen, Harold and me. Cooked way too much food and just sat around. Good thing since I worked like a maniac outside yesterday and I think I used up all my allotted energy for today! Heard a distressing fact from Jen. She is scheduled to go for a mammogram to have a baseline and the doctor had to schedule it as a diagnostic mammogram because if it was just a regular check-up she would not be able to get in until the end of the year or the beginning of next year! Good grief. So, please don’t put off making that very important appointment as it may be just as long a wait in your area.
June 20 – Week 5, day 2. Tiredness is beginning to really set in now. Went for my walk this morning and had to rest for a half an hour when I got back before I could get on with my day. Not sleeping well again, not sure if it is because of treatment or stress or just what but I know that doesn’t help this situation. Collarbone skin is beginning to be a bit sore now, and ……………………………… I found a lump under my left breast not far from the last tumor! Have a bit of a rash in that area also. I almost croaked when I felt that lump! I was in the shower yesterday getting ready to go for treatment and I raised my left arm up to wash and felt a “pull” and some soreness under my breast. I felt around and lo and behold there it was! I saw the doctor yesterday and he feels it is an irritation from the radiation treatments, that typically things start to happen in the fifth week that can be unusual, but that because of my “special status” (that damned elite club I belong to!) we will all be watching it carefully. That area is being treated with radiation and he said it would be highly unusual for it to be a tumor but that anything is possible and that it bears watching. If it is still there after treatment ends we will wait a week (found out that I will still be “radioactive” for approximately five to seven days after the last treatment. Takes that long for the radiation to leave your body.) and then he will order a new scan to check it out. He said that right now all he would see would be a lot of inflammation and the lump is about the size of maybe a quarter of a pea. Feels to me like the size of a pea but he said if it feels that size on the outside it would be the smaller size on the inside. Interesting. He also said that because when he applied pressure to it I felt some pain that it was a good sign as a tumor, generally, would not hurt, just the area around it. He also said on his way out the door, “We do not need this.” I totally agree. So I shall begin to report on Lucy Lumps’ activity. Ya’ know…………….I really could do without this. Feelingverysorryformyself Francine is trying to worm her way in but I am having none of that! Watchful Wanda maybe, but definitely not that tiresome Francine!
Now that I have floored you with my latest news, how about the Photo of the Week! Also, I PROMISE that for the next few updates it will be the “Wiggy Girls” photos. My friend Marie is coming over on Friday and she will photograph me in all of them! For this week’s photo it is of the end of my studio. It is the whole width of a house! If we ever get an electrician out here we will get back on course! Okay, okay, enough ranting! I have begun to landscape the outer edges, still have clearing out to do but Harold welded all the arches together that you see on the right and I have started wisteria growing on them. On the left side by the house everything (mostly roses) is in pots because it will all have to move when the stucco finally gets applied. They will all stay in pots though, I will be creating a “walled bed” for them after the final trim work and paining is done. I will also be adding pavers in the middle area in the future. I’ll wait until all construction is done for that, too. But it all works nicely for now and gives me something to do! Look on the right side of the photo on the tree. You can see a little metal box about six feet up the trunk. We keep that filled with raw peanuts in the shell and the squirrels come down to the landing, stretch up to the top of the box, open the lid with their paws and get a peanut out! They sit there and eat it most of the time, sometimes go up into the tree so another squirrel can come in and sometimes when it is almost empty all you see is their tail and back legs they are in so far getting the peanut! Constant source of amusement for us. When it does start to get empty they will sit on the platform, stare at you and begin to chatter so you know to go get some more peanuts, NOW!
Margot a.k.a. Perky Polly – Keeper of the Perky Twins, Vanessa Vampire, Shady
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