Margot Update 5
Saturday, September 6
No real anything to report. Major breakthrough though, I actually am able to sleep on my side again with no earplugs! Still sore from the expanders and I have decided I now have three sets of boobs! The ones I reported before but now I think that I have another set under my arms! I told you about he extra roll that is there because of the breast tissue being gone - well imagine this - fill two plastic sandwich bags half full of water then place under your armpits. Can feel them every time I move my arms. This is a temporary state, as the expanders expand it will pull some of it forward and Dr. J. will liposuction out the rest when I get my permanent implants. But for now I also think I shall take out stock in baby powder, slather that stuff all over my chest at least four times a day to keep things from rubbing against my skin. Still hypersensitive. I also must check my clothing and especially my feet after powdering - that stuff goes everywhere and I have these telltale spots of powder on my toes! Looks a bit odd!
Still very tired after about 2 p.m. so I go to one of my little nap nests that I have created and drift off . Feels very indulgent! Still no driving.
Had a bout of depression yesterday afternoon. Weepy Wanda for sure! Don't want you to think I am perky all the time! Searched the Internet about post menopausal estrogen negative women like me and I found a couple of places that said the prognosis was poorer for these women. Sat at the computer just sobbing! Today of course, I am aware that they didn't state how much poorer - 50%? 1%? slight? great? - didn't say that so I shall read no more until I see the oncologist on Thursday. That unfortunately, is another depressing thing. So far, all the doctors and the hospital that I have been to do other things so they are just "Florida Hospital", General Surgeon", "Plastic Surgeon", however Dr. Molthrop only sees people with cancer so I have to go to the Walt Disney Memorial Cancer Institute next week for my first visit and then to the Winter Park Cancer Care Center for the rest of the times I will see him. There is the word CANCER just hitting me in the face and everyone in that waiting room will have cancer, too. Most distressing. I know I will get used to it but that first visit is going to be rough. Both Jen and Harold are going with me. Both for moral support and to be sure we get all the info straight. This man also holds the key to my future so that makes me just a bit anxious, too. Egads, I am turning into Doom and Gloom Dolores!
Well, let us move on to better things. Sorry, but you do have to take the bad with the good in these updates since I am trying very hard to be factual about the whole thing. As my professor daughter Jaime says, "You are not trying to get an A+ in breast cancer." Can I try for a B+??????????????
I also have to correct some previous info. I told you that I was negative for the HER2/neu gene and that is true but it was not the gene I thought it was. The Her2/neu gene shows how aggressive the cancer is and negative is good thing meaning it is not aggressive in me! However, it is not the gene that is tested for how susceptible a person is to breast cancer so my daughters still don't know that. Must keep my facts straight for all of you!
Wednesday, September 10th (my birthday!)
A word here about my birthday. Not usually a cause for celebration in the past 20 years or so. My sister Tina's birthday is on the 12th so she shares my thoughts. My dad died on my birthday!!!!!!!!!!!! Well, there is no problem remembering that date now is there! Mother, within one week, brother within two weeks, then we have September 11th - as Nurse Martha says, "We just all try to get past your birthday for another year and see who makes it!" Now I get to go to the oncologist on September 11th. Geez!
Aren't I just a beacon of sunshine this time!!!!!!!!!!!!!
Actually I feel pretty good right now. Still sore but, not quite as intense as before. Did some yard work on Sunday!!!!!!!!!! Fresh air, sunshine, dirt under my fingernails! Just wandered around and trimmed things I didn't have to reach very far to get and pulled some weeds. Was very good and wore a glove on my left hand to prevent cuts or anything that could cause infections and thus contribute to lymphedema (swelling from retained fluids due to the removal of lymph nodes). Do not need that aggravation! Came in, took a shower and promptly fell asleep for four hours! I really am getting stronger each day and haven't needed as many naps. Am able to reach all the way up with my right arm and almost all the way up with my left arm (that still hurts to stretch where the lymph nodes were removed) so have not lost any movement at all. Feels good to be able to move my arms above my shoulders finally! Still not ready to drive yet, though.
Just going to relax today, go out to dinner with Jen and Harold. Tomorrow begins the new onslaught of doctor visits so need to keep up my strength.
I just had a thought - these new boobs are going to hurt all the way through the construction process it seems, if it is not my skin feeling raw then it is the expanders stuck in between my chest muscles and making them stretch - I believe this qualifies as giving birth to them! Am having twins! Should I have a contest to name them???????? If I am Perky Polly should they be - Dolly and Lolly??????????????
Thursday, September 11 - Began with having to get blood drawn for cholesterol test, now have to have it out of my right arm only because of the lymph nodes removal. Much harder on me, had to squeeze a ball until I thought my hand would spasm, but she did make it on the first try, thank heavens. On to more fun and games! Saw Dr.Molthrop the oncologist, and recommended chemo, 4 times, 3 weeks apart (Weepy Wanda was trying her hardest to break through my reserve but I mostly stuffed her back into place!). Harold and Jen went with me to the doctor, so glad they were there. That would make me finish up the day before Thanksgiving. That would be appropriate, don't you think! No reconstruction fill on second weeks as my white blood count will be low. Will most probably lose my hair, figure I have five weeks left of hair, have been cutting it a bit each day so by the time five weeks is up I hopefully will be able to adjust. Sounds good now, will let you know how I actually feel when I am bald. I mean, I only have two really good features, my eyes and my hair! As Nurse Martha told me - "Just think how dramatic your eyes are going to look!" I did get a prescription from the doctor for a wig - guess what is written on it????????????? "Cranial prosthesis!!!!!!!!!!!!!!" Thought I would die of laughter when I read that. Apparantly insurance doesn't cover wigs but they do cover cranial prosthesis' for chemo patients! Need the chemo because of size of tumor (over 1cm), grade of tumor from pathology report (3) and estrogen and progesterone receptor negative results (because the cancer no longer needs these to grow, could do it on its own if there are any left). Need a chemo port installed, that goes into my chest on Monday by Dr. Portoghese, the same doctor who did the mastectomies. Minor surgery, Rapid In and Out at the hospital. General anesthesia again, though, but of course, I shall take the "recipe" for the anesthesiologist. I must say, it is getting pretty full in there, two "fill" ports and now a chemo port! Not to mention the six boobies!!!!!!!!!!!! Will be much easier to have the treatments, otherwise I would have to get it in a vein each time and it is pretty caustic stuff. First chemo treatment will be the 24th - need some buoying prayer and thoughts before that, pretty please??????? Will take three hours the first time since they will be going over al lot of stuff with us, then about an hour and a half each time after that. We will all go to a class on Tuesday night for "New Chemo Patients and their Caregivers" at the hospital. The visit wasn't as bad as I expected, signs were small so they didn't scream "CANCER" at me. Dr. Molthrop is younger than I expected, maybe mid to late thirties, due to his fantastic reputation I expected someone much older. Very nice man.
You know I can find humor in the oddest places. I actually was laughing after he told me I needed chemo! Well, the chemo part wasn't funny of course, but both he and the Nurse Practitioner were amazed at what I brought to them. They loved it just for your info but were still amazed. I brought copies of all reports, a typed listing of all current medications, past meds, as needed meds, supplements, past surgeries, exams, tests and their results, etc, all in chronological order! This was accompanied by my complete medical history, all neatly categorized of course! They both were so surprised to find I was an artist by profession, they thought I was an engineer or someone in the medical field!!!!!!!!!!!!!!!!! They didn't say it but I think they figured artist were flaky by nature! Before you think it, no, they did not say I was anal - just thorough! I told them I taught classes and always wanted my students to have every bit of info possible on what they were learning so it just made sense to me. I always do that when I go to a new doctor. Even take them their own copies so they don't have to make copies! That being said - think about it for yourself - there is no space on those forms from their offices, my handwriting is atrocious and tiny ( can't decipher some of my own notes!), I could never remember when or where I had surgery or what my different medications were, what family member had what wrong with them, what the phone number and address were of "Someone to contact not living with you" on their office forms. Now I just write, "See attached list" in those tiny spaces. They all love me in the different doctor's offices because it is easy to look up stuff on me and I feel it enhances my care because I haven't forgotten to tell them something important. I update the files after I go to the doctor while it is fresh in my mind. I have been doing this even before all of this crappy stuff started to happen. Just a helpful suggestion.
I also have to cancel all my commitments until the first of the year. He is very concerned about the risk of infection due to the chemo bringing down my immune system and flying, airports, hotels and classes full of people make him very, very nervous on my behalf. He says he is very paternal about his patients. He says he knows I would like to stay as normal as possible but would rather I be at home now so will be able to go other places for many, many years to come. He also said I had a lot going on with the reconstruction and the chemo and that both make me uncomfortable and chemo is probably going to make me feel ill and tired (as well as bald!) I have gone along with his suggestions and have begun canceling my classes and other trips I had planned. I am sure he is right as just the stress of all this is making me so very tired. I can still work on my third book, design and work on my web site as I am able, so I will go with that. No deadlines, though.
To just top things off, Harold was laid off from his job! Not a catastrophe, though, he wanted to change professions and now he is going to go back to school to become a Fire Safety Inspector. Nice to have him with me, too! Luckily, our finances will permit this so we are taking it as a sign from above to make the changes he has been talking about.
On the subject of losing my hair - I just adore Halloween and I will be in week before a treatment on that date so should be feeling okay. I am anticipating celebrating Halloween in my usual style - scaring the daylights off anyone I can! I usually dress up as a dead person with a disgusting wig full of little spiders, but this year I think I shall have my little bald head showing with a big, black spider sitting atop and paint my face with a spider web over my skull face! I even found a fiber optic spider I think I shall purchase for the occasion! I also asked Harold this morning if he had any secret fantasies he wanted to explore such as a blond with long, wavy hair or a raven haired vixen with spiky hair! He just looked at me and said, "No.", very calmly. So I have decided that I shall purchase a wig that looks similar to my own color and style for "normal/proper" occasions, but I want a red curly one and maybe something spiky for the rest of the time!!!!!!!!!!!!!!! I have always liked wigs, used to wear them in fact, so am going to have a good time with them since I need them now. Not much of a hat person but will be looking into painting some scarves to wear if I don't feel like it's a wig day. I am doing the MAD painting conference here in Orlando in January and the Vegas convention in February and no telling what those of you that attend those functions will see me as, blonde, brunette, redhead???????!!!!!!!!!!!!!!! By February, my own hair should be in to some degree and I may just spike it! I have heard that it sometimes grows back curly - that would be nice, no need for a perm!!!!!!!!!
Okay, this update has truly turned into a book, but a lot happened this past week so I will sign off for now!
Love to you all,
Margot - (still ITBC material - but since I have so many at the moment - do I still qualify for membership??????????)
After reading through the updates,
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