Margot Update 32
March 15 - Good grief – thirty-two divided by four equals eight so this makes eight months I have been writing this journal! So much has happened in these pages. Good, bad, but for the most part, just moving forward with life.
Greta Gardener gardened yesterday in between going off to the home improvement centers with Harold on our quest to finish the guest bathroom. He is quite amazing you know, the ideas he has are fantastic. The room is not huge but will have quite an impact when finished. Of course, there will be photos! Feels so good to be able to contemplate my part in this – the wallpapering and painting that have been on hold since last summer! My granddaughter, Chloe, is coming (all by herself!) to visit in June and she is just like her Gramma – loves pretties! So she will have the guest bath and bedroom all to herself and it will be fun to have it finished for her. I can just see her in the Jacuzzi tub with all those bubbles! By candlelight with a soft drink and a book! Must start them out right, she will be 7!
Observations – I found out yesterday that I am no longer deathly afraid of snakes. Couldn’t even see them on TV, had to cover my eyes! Still prefer to call them sna-kays, though. One was in the bushes and Harold called Jen and I over to see. Normally, I would have run screaming into the house but this time I went over to look and watched him for a while (all sna-kays are male as far as I am concerned!), even when his tongue came flicking out in agitation! He was about four feet long and wrapped all in my bush right next to the garage door! I had been back and forth by that bush and Harold had even been using a power saw so why he was there is a mystery. Anyway, the whole point of this story is that having faced death, a sna-kay is a minor thing now! I do know they are good to have in my garden and this one was a rat sna-kay so is definitely a positive thing. Just hope he doesn’t feel the need to move his whole family in! I leave the outer perimeter of the garden untouched for the most part, so the wildlife can co-exist with us in peace.
Do any of you remember the actor James Coburn? If so, we share the same hairstyle! I envisioned this growing out process to be this halo of hair getting thicker and longer as time went on. The reality is this stuff that is growing right next to my scalp (except for the Mohawk area that will stand straight up if brushed in the wrong direction!) in many, varied directions! All of it wants to come forward at some point! Glad I like my wigs as it looks like I will be wearing them for a while! Might go looking for a dark brown one so my own hair sticking out from underneath won’t look odd.
Another jumping boob story! Harold and I stopped at Wendy’s yesterday for lunch. I went to get the ketchup and you have to fill little paper cups yourself. Guess what happens when you press down on the plunger for the ketchup?????? You guessed it, jumping boob! It took all my control not to burst out laughing!
Cat fur shows no sign of going away – put lotion on my face on Saturday and played at combing patterns in it! Good ole’ menopausal night sweats have returned so maybe my hormones are trying to regulate themselves.
March 16 – Yet another jumping boob story! Mashing potatoes with a potato masher! Yep! Wonder what other “wonders” are in store for me! I believe I am going to have to learn to be ambidextrous so the right chest muscle does not get overdeveloped with all this jumping boob stuff! That would just not do at all!
Speaking of the Twins – I still use the Body Glide under them and to the outer sides of them. Probably because I don’t wear a bra and those areas of skin rub a bit or clothing sometimes rubs. Guess I wouldn’t need it if I would “conform” and wear a bra, but that is not gonna happen unless I buy one just for looks! I will say that I would have more nicely shaped boobs if I wore one but I am going to stick to the “minimizer bra” look for now! Such freedom! I am a true child of the 60’s – burn those bras! Keep well stocked in Body Glide!
I “combed” my hair last night!!!!!!!!!!!!!!!!! There is enough to come down over my brow about 3/8”! I could comb patterns in it and it stayed! All forward, mind you, and flat to my head but hey – combing is combing! Progress! Harold asked if I would go out in public like that and the answer is a big fat “NO!” I said it is interesting, not attractive!
Progress on the hunt for the lymphedema sleeve! My mentor friend Lisa gave me the name of a woman at the hospital. I called her and she referred me to a physical therapist, I called her and have an appointment to be measured tomorrow. She will then try to help me find one that does not have to be custom made. She has more resources available to her than the medical supply stores do, she told me. I have to report my findings back to the first woman I called so she has the info to pass on to others. Leads me to believe that women are not being motivated enough to go after a sleeve or I suppose it could also mean there are enough standard sizes so that custom ones are not needed as often. Or, maybe they just give up when a standard size is not available. Or don’t know where to go. My, there could be a lot of reasons! Please pass on the word about the sleeve to anyone you know that has had lymph nodes removed and is a frequent flyer or plans to fly at all. Prevention of lymphedema is a whole lot easier than treatment once it rears its ugly head! Whoo-hoo, Soapbox Sue is at it again!
I received the following from a reader on the bit I wrote about the woman being afraid she would be mutilated after her mastectomy surgery. “I never considered myself mutilated by this either. I have about a ten inch cut from mid breast to under my left arm. I felt as you did that my body turned on me and this diseased breast had to go or it would kill me and in a very horrible way. Right now, my sister-law has a friend who was so afraid to go after she found a lump, she waited until she ended up with a stroke. So now she is dying from cancer as it has spread to her brain and she is helpless with a dead left side of body. Common sense needs to prevail, cancer does not go away (maybe a miracle or two every hundred years, but most of us will not experience a miracle). With thoughts of surgery, chemo and possible radiation (all fearful), there was still no alternative. I would never want to wait to die from untreated cancer when I knew full well it was there. Everything I go through is the only option I have to continue to live.” Pretty powerful words!
March 17 – Happy St. Patrick’s Day! I met this morning with the occupational therapist, Karen, and what a wonder she was! She measured me, found a sleeve that will fit and did not have to be custom made, gave me the ordering info, I will get one for prevention so the compression won’t be as strong as for someone with a problem already. She then spoke with me for a while about lymphedema. She is with sports and rehab therapy and they have a grant from the Susan G. Komen foundation to promote info about lymphedema. Apparantly the foundation feels there is not enough focus on the lymphedema problem, also! Anyway, I found out that not many people seek out info on lymphedema, they trust their doctors to inform them and do not do preventative treatment unless someone tells them about it. Insurance companies do not pay for preventative sleeves, only after you have problem that needs to be treated! Another thing I found out from her is that you can have up to 30% swelling before you can see it!!!!!!!!!!! She showed me how to test my arm to see if I had it (I don’t) by pressing firmly and holding your fingers for a bit against the skin on the lower top fleshy part of the arm. When you release, the skin should come right back up, if there is an indent then you have some swelling. Never have read that! She also told me to put the sleeve on an hour or two before flying and then to leave it on for two to three hours after the flight to allow any swelling to go down. Hadn’t ever read that either! Makes good sense – I wear support stockings when I fly for my veins and I leave those on when I get to where I am going. She said a lot of what they are learning is by talking with patients who have it and reconstructing how they got it. She gives seminars in our area on lymphedema and I will most certainly get to one of them and just listen. She says she is continually amazed at what she is told at the seminars she gives, like women being surprised that this is forever, not just for five or ten years. Lymph nodes don’t ever grow back - gone is gone! Or, never being told about what to do to prevent lymphedema in the first place. I think its that old “Well, only 20% of women ever get it” and “Probably you won’t get it.” syndrome! It is the words “20%” and “probably” that I don’t like! To me that says there is a risk involved!!!!!!!!! Naturally, the next seminar she is giving is next week, the day after I leave for Knoxville to teach! I was very impressed by her knowledge, willingness to take the time to share that knowledge and her commitment to getting the knowledge out to as many people as possible. She was an all around “nice person!”
Tried to slide into that pit of gloom today with my very own “pity party” with Mournful Maureen in attendance, as I was driving around doing my errands but did not let myself do that (my other “selves” joined in the conversation!). It is warm here so there are lots of women walking around in halter tops with their own nice breasts with not a care in the world. Do I know that for a fact? Of course not, it just looked that way to me. Maybe it was talking with Karen about stuff being “forever” and that got me thinking about my hair loss, all the surgeries, chemo, having to find a compression sleeve, dealing with the tiredness – all the crappy stuff that has happened over the last seven months. I had quite the conversation with myself! Today I was Moody Maude – emotions were up, down, up down, (and like I said, we all know I have many, many personalities!) Practical Paula stepped in with, “Okay so it is forever, but…you do have a forever now to deal with now don’t you?” And Sarcastic Sally said, “So you have to wear wigs and your hair is growing back in not as you expected……. it IS growing back and you will have to deal again with all that goes with having lots of hair. Shampoos, styling products, blow dryers, curling irons……… for the last five months you have just had to shower, dry your head, grab your “hat” and go so give me a break!” And best of all, Forthright Fiona said, “If you want to wear a halter top then lose some weight and buy one!!!!! The Twins don’t even need a halter top with a built in bra for heaven’s sake! Get a grip!” I finally gave up on the negativity, put in a Joan Jett and the Blackhearts CD, found the song “Dirty Deeds,” (dirty deeds an dere done dirt cheap!), turned it up loud and blasted away the “blues!” Next stop was the Dodge dealer – naturally, I buy the car and someone steals the hood emblem!
Sooooooooooooooo tired tonight! Going to bed at 9 p.m! This is that crappy “bone tiredness” like when I had chemo. Why do I push when I know the end result will be that tiredness?????????? Don’t anyone answer me on that one – I do know the answer! Tired Tina needs a good scolding!
March 18 – Wonderful news! Compression sleeve is on its way and I will have it to fly with next week! Hurray! I will feel so much more at ease knowing I will have that sleeve on.
Something exciting happened today. Excited Erica was in residence! I got an email from the President of Body Glide!!!!!!!!!! He was doing a search on his product and my site came up with the Helpful Hints or What I Wish I had Known section! He asked me to call so I did and we spoke for some time. He had a call a few weeks ago from someone going through chemo so I was the second cancer patient in a short period of time to be using the product not for running related uses. The first call was about the hands and feet of the person being very soft and ultra sensitive from the chemo and needing something to protect from chafing. He called the oncology nurse of this person and she confirmed that it was a problem that happened to chemo patients. I have never heard that before so learned something new myself. I will do a write up (testimonial) for him on why and how I use the product for cancer/reconstructive surgery. He was very impressed with how my site came up in the search, said I must be doing something right and I let him know it was Marian, my webmaster, not me, who was the genius there! Anyway, that was my excitement for the day! Pretty cool, huh?
March 19 – Happy Birthday to Harold! He is fifty-five this year! We are still going to Wings tonight – it is Friday after all. I got a cake made from the bakery that has a race car theme (I have told you he is a big NASCAR fan haven’t I, with his own TV room done up in race theme) and will take it down to the restaurant this afternoon. Sandy, our waitress and friend will bring it out after we eat. I got one big enough to share with all the staff there as they are like a second family to us. Saturday night he wants to go out to eat steak! He wants to begin to restore his truck, and ’89 king cab, long bed Chevy Silverado so Jen and I (she did all the computer graphics) created “Truck Bucks” and “Chevy Change” fake dollars to give him for his birthday! He can turn them in for cash when he needs something. We called Jaime and she got in on the action, too! What fun it will be to watch him unroll all those little pieces of paper!
March 20 – Greta Gardener has been at work again and I am noticing that the outer sides of the Twins are a bit tender. Probably all that raking and digging motions. Nothing dreadful, just a bit sore to the touch and when I stretch. Sometimes I can feel a slight constriction when I move, more like a muscle spasm, doesn’t hurt but for a second, more of a surprise than anything.
Observation 1 – Slept very well last night, have been having some trouble staying asleep at night. I think I am trying to sleep more to take care of the tiredness instead of taking it easy on my body when I am awake! I slept less hours and feel much better! I simply MUST take a few rest breaks during the day for a while yet it seems.
Observation 2 – Still experiencing some problems with memory loss but nothing I can’t deal with. Also, when following through with something that has a lot of steps I seem to get lost and have to think it through from the beginning to get back on track. It is very annoying but not earth shattering by any means. A bit of leftover “chemo brain” at work!
Photographer Phyllis was busy again this week! We are still in the “Garden Series.” This time it is continuing on down the left path off the patio that you saw last week. Harold built the pergola you can see on the left side of the photo and that is off our bedroom that also has sliding glass doors like the kitchen so I get a full view of my garden from the bedroom, too. I must photograph it today, again, as the wisteria is in full bloom now and it is so peaceful to sit out there with a book and a coffee! After reading over my entries this week, it seems I should be doing more of that!
Until next time, I wish you all good health and much happiness!
Margot, a.k.a. Perky Polly- keeper of the Perky Twins, Soapbox Sue, Mournful Maureen, Practical Paula, Moody Maude, Sarcastic Sally, Forthright Fiona, Tired Tina, Excited Erica and Greta Gardener. Weepy Wanda seems to be out of town this week! I am glad, she is a bit tiresome.
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