Update 71

May 30 – Beginning second week of radiation treatment.  I was lying on that table today for an hour!  Once a week they check their settings with X-rays and they were 2mm off (he said it was the size of the head of a match) so they moved and shifted and X-rayed until all was in line.  My legs went to sleep!  And I was getting cold.  Usually takes about a half an hour.  After about forty-five minutes Perky Polly was telling me she was a bit chilly!  Glad they are so precise but my whole body was beginning to ache staying in that one position for so long.  Saw the Nurse Practitioner today and for the first time I was not impressed. She was just okay. I believe I will ask my questions again when I see the doctor.  I felt she was giving me pat answers, especially after I asked again about damage to my heart and lungs and she said I would be fine and then I asked her about my high risk status and she asked me who told me I was at high risk.  Well, the doctor actually, and she said, “Oh, well, he was probably just going over some of the possible complications.”  Hmmmmppppfffff.  That is NOT what he said.  She also said (in a condescending manner) that she had never had radiation herself but from what she heard it was not too bad. Yes, well….  I did find out that the Radiation Pneumitis is not something you get during radiation treatments, it usually comes about six months after if it is going to be a problem.  If you get it though, it is a chronic problem meaning you have flare ups for life.  She said with breast cancer patients it is usually the skin irritation and fatigue that are the main problems.  I asked about low white blood count (I read that somewhere) and she said that usually happened with lung cancer patients and that they normally don’t run weekly blood tests like you get with weekly chemo so it is not something they check.  She had no idea why he would say that I was difficult to treat because of my body shape. Also, I can quit slinking about the parking lots with my shirt pulled up!  She said I would be fine going from the car to the store, just to stay out of prolonged sunlight. Good to know I won’t shrivel up and turn into a pile of dust after all, if the sun hits me!  I believe I will still keep Vanessa Vampire around though, to remind me to stay out of the sun!

I have been more tired than usual lately, slept both Wednesday and Sunday afternoons and I have not done that in a while.  I really think it is that finally I am getting good sleep at night and I didn’t sleep all that well during chemo from all the various drugs.  Also, my body is trying to repair itself from the chemo and is now being bombarded again with more cell damage from radiation.  I must keep reminding myself it has only been seven weeks since chemo ended.  None of this has stopped me mind you, I worked out in Jen’s front garden on Sunday and my own garden on Monday.  Have also written four magazine articles and kept up my house so I guess a stray nap or two is not cause for concern!

Hair report.  Tiny little eyelashes are there, about 1/32 of an inch long, not anywhere ready for mascara!  Eyebrows are filling in a bit and my right one seems to have forgotten its former shape!  I have to pluck stray hairs out every day!  Hair on my head is filling in.  Feels like petting a short haired cat!  No curls at all! Stuff is straight as a board! And, where did all that grey come from????????????????  Maybe it was really there all the time and I didn’t know it because I kept Ravishing Red-headed Real Hair Rita colored. That was two years worth of aging going on from the last time!  Very silver actually but I do not look distinguished or regal with it, I need my red!  Teeny little hairs on my arms and that is about it.  Everywhere else remains the same.  I hope I don’t get the “cat fur” on my face like I did last time!  I could comb that stuff!

A friend wrote and asked what happened to Lucinda Faye.  I hadn’t even mentioned her in the last update because she only causes a slight twinge now and then so I forgot all about her!  Good riddance!  I am sure she left before I found a way to kill her off!  Good thing, I was getting pretty tired of all those bananas!  Guess what else????  Numbness in my hands is all gone and just the sides of my toes have a bit of numbness left, should be gone very soon!  Hurray!

The electrician should be here sometime this week!  It will be good to get back working on the addition.  I am sooooooo ready to move in to my new studio!

New wigs came.  Three in, two out. Trendy Teresa gets to stay.  Frosted (blonde and brown and red) on top then blends to red then blends to dark brown at my neck.  Cool!  Spiky of course!  Another was the same color combination but would take too much to get it to have “The Look!”  The other one was……………..grey!  Tag said red but it was most definitely grey.  Didn’t even try that one on!  I already have that “look!”  I now have seven I really like so think I am set unless they come out with one I just “must have.”  Stylish Stella, Jazzy Jasmin, Fiery Fiona, Classy Clarice, Practical Prudence, Sassy Simone, and now Trendy Theresa.  Did I tell you I sent a very blonde friend Joan Jett (dark brown, black and red) and Dramatic Drucilla (black)?  I told her if she wanted to go incognito she could add sunglasses and no one would ever guess it was her!  I believe she will opt for wigs closer to her own color when the time comes but she may surprise herself and go dark!

May 31 – I found out something today.  It is not just MY chest area that is difficult to direct the radiation using IMRT Technology.  The tech explained the difference to me today between regular radiation and IMRT and apparently the fact that bodies are not flat when directing different strengths of radiation to a large area makes it hard to compute all the different calculations needed. Thank heavens!  I am not Quasimodo after all! I kept looking at myself and wondering what was so weird about my chest area!

Nice day.  Had my massage and didn’t she have work to do!  I was so tight, could it be stress??????  Now that I have my radiation schedule I can make plans so I will see her every two weeks during all this just to help me stay loose!  She is in one of Dr. J’s (my plastic surgeon) office areas and she had told me he wanted to talk to me so I went early.  Well………….I am now the proud owner of a gorgeous piece of fused glass that is of a pine tree.  The trunk is done is copper wire sandwiched between two pieces of glass and the foliage is glass granules also in between the layers.  I will ask if I can post a photo, didn’t think of it when he gave it to me, I was so impressed.  He said I had helped him become more open about his work and willing to show people and to even enter art shows.  Very cool feeling to have influenced someone like that and to receive a piece of their artwork.  Had to tell him, too, that both the radiologist and the nurse practitioner were impressed with how the Perky Twins look and specifically asked who performed the surgery.

June 2 – Spirits quite high today and I feel just fine.  It is Friday and after today’s treatment (number nine) I only have twenty-nine more to go!

No skin irritation as yet, probably next week sometime but for now I am feeling on top of the world!  A bit tired in the afternoons and I was thinking yesterday that maybe I needed to see about getting one of the dreaded Burning Aranesp shots next week when I have my Herceptin treatment.  I mentioned the tiredness to the radiation tech and she assured me it was quite normal. This morning I had an epiphany!  I have been getting up around five or five-thirty every day since Harold changed jobs and go for a mile and a half walk before the sun comes up, garden for an hour or so, work at my job plus cleaning and laundry, etc. until noon, have lunch and get ready to go for my daily treatment.  MAYBE that is why I am “a bit tired” in the afternoon!

One disturbing thing has been happening, though.  I am forgetting the oddest things. For example; I made potato salad for Memorial Day.  I have made potato salad this way for forty years and cooked the eggs the same way every time.  I FORGOT to let the eggs sit for fifteen minutes after they came to a boil and so I had a dozen soft boiled eggs for deviled eggs and potato salad.  I am having some trouble retrieving words as I am speaking.  Yesterday I was talking about something being at ??????.  Took me forever to pull up the word “risk”!  And at the moment I have forgotten what things I was distressed about forgetting!!!!!!!!!!!!!  Seems a bit late for “chemo brain.”  I did have it last time and it did go away so I am hopeful this time, too.  Maybe I just have a lot on my mind and there is only so much room in there for storage!!!!!!!!!!!!!!!

Went to a Memorial Service last night for my friend who passed away last week.  I was dreading it since she passed away from cancer and that is just a bit close to home right now, but I knew if I didn’t go I would regret it forever. It was wonderful.  Lots of friends there, a really nice service that actually made you laugh at times, heartfelt tributes from friends and a slide show of her from when she was a baby.  Instead of mourning her death we celebrated her wonderful life. They had a reception following the service and had tons of her artwork all over the room.  It was really wonderful to see and remember her like that.  Painting was her life. 

I can now share something fun.  In the Creative Painting Vegas catalog for next year I have alter egos listed under my name!  I have two classes and for one (127A) it says “Margot Clark a.k.a. Fiery Fiona” and the other one (181A) says “Margot Clark a.k.a. Classy Clarice.”  I promised I would wear those particular wigs when I teach those classes.  For two out of the last three years I have taught at that convention I have had to wear wigs due to cancer treatments so everyone there is used to seeing me in them and ask me in the hallway who I am that day!  How fun this will be!  I promised not to say anything until the catalog came out.  If you are interested you can check it out at www.vegaspaint.com 

June 7 – Things have been pretty normal here so I haven’t written for awhile. Had an hour and a half Herceptin treatment in the morning yesterday, met Jen and two friends for lunch and then back to the Cancer Center for my radiation treatment, then home to meet the computer tech.  By about five o’clock I was getting pretty wiped out.  “They” say that Herceptin doesn’t have any visible side effects but this same thing happened with the last Herceptin treatment and I was not even having radiation then.  So I am probably in one of those exclusive Five Percent Clubs who get really tired from the treatment!  Slept for over twelve hours!  No complaints though, resting is nice.

Am in my third week of radiation now, after today I ONLY have 26 more to go!  Skin beginning to be just the slightest bit irritated.  A bit red right after treatment on the inside of my left breast and on up the middle of my chest on over the collarbone.  Doctor started me using Biafine cream (bee –ah-feen), a wound and skin care emulsion is how the label reads.  One of the conditions it mentions that it treats is Radiation Dermatitis. Saw the doctor and nurse on Monday and she told me that soon I would be getting tiny red bumps and more irritation.  He said that my skin would be getting red and sore and that was their intent.  He did say it with a smile, though!  I am still to use the sun block on the areas that would be above my shirt when I am outside and after treatment is over and I am healed I am to use the sun block over the whole radiated area when I am outside for a whole year!  The nurse told me that women who use the Biafine faithfully, right after treatment and two to three times a day, have a much better time of it so…………………..that is what I will do!  Right now I feel nothing at all there so it is just the afternoon after treatment so far that is a bit irritating. I see a woman when I get my Herceptin every three weeks and she is ahead of me in radiation so I always ask her how she is doing.  She has no skin irritation at all and is not at all tired.  She is getting the standard six week treatment so that should be good news that she is having no problems at all with radiation. It is also her first go around with breast cancer and that makes a huge difference in treatment.

A weird thing happened Monday during the set-up for treatment.  The machine was placed way down on my left side and they had just the light inside on and the room was dark.  I was just looking around for no reason, boredom probably and I noticed an odd reflection up near the ceiling.  I got quite a jolt when I realized it was Perky Polly’s shadow!  I don’t call them the Perky Twins for nothing!

Hair report – Mascara!  Yes, mascara. Glamorous Gloria is happy again!  I am probably pushing it a bit as my eyelashes are growing straight out and down, about a quarter of an inch now, like a horse’s grow, but they are long enough, even the bottom ones, for a bit of mascara. Eyebrows are filling in, I actually forgot to add a little eyebrow pencil yesterday (after plucking out some unruly ones) and did not look odd.  A bit light for Trendy Teresa’s hair color but okay.  Body hair still negligible.  That is okay by me.  Head hair is thicker but still have to wear it like the actor, James Coburn, do you remember him?  Slicked down, Nero style, silver and brown. Not too bad if I have make-up on.  Tried a bit of gel to make it spiky………………….not good, not good at all!  Looked like a little old man who stuck his finger in the light socket!  Not exactly the image I want to portray!

Still no electrician!  Who knew this would be such a large stumbling block! Everyone we talk to say they are interested in the work but no one calls us back!  Grrrrrrr………….

Photo of the Week –This photo (not of me, mine would be a bit more “pleasingly plump!”) is of the area that is being radiated on me.  It shows the whole lymphatic system on the chest area and the treatment I am receiving catches all those lymph nodes and lymph “veins.”  Easy to see why the treatment covers such a large area and to see why it catches part of the lung and heart.  This shows the right side and my treatment area is on my left so nine of the lymph nodes under my arm are gone from the first mastectomy surgery in 2003.  The little bean shaped things are the actual lymph nodes and the green lines are the drainage system. 

Margot,   a.k.a. Vanessa Vampire, Lucinda Faye, Ravishing Red-headed Real Hair Rita, Trendy Teresa, Sassy Simone, Fiery Fiona, Practical Prudence, Stylish Stella, Jazzy Jasmin, Classy Clarice, Joan Jett, Dramatic Drucilla and   introducing…..Glamorous Gloria (she was here all along, I guess I just never acknowledged her!)


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