Margot Update #9
October 4 - Feelin' fine! Went to Wings last night and had a wonderful time then on to Starbuck's for coffee. So nice and normal! For those of you who don't know about Wings - it is a restaurant that we have been going to for 16 years (not a typo!) the last 10 or so every Friday night! Its real name is Murray's Wings and Ribs but no one calls it that - it is just Wings. We have had the same waitress all that time, too! Her name is Sandy and when she sees us, she puts in our order! They even know in the kitchen that the Clark's are there! We have other friends join us from time to time since they all know where we will be on Friday nights! After all this time all the people there are like our family. So just going to have dinner and coffee afterwards without feeling sore or sick is such a treat now.
Decided since I have nothing to complain about I would use my space for product review! Linda, are you listening! Linda Heller is a dear friend of mine and the editor of PaintWorks magazine. I have written articles for her for years and years now. She gave me my own column called Prime Your Palette, about a year or so ago and it is based on products so I am used to writing about them. Just want her to know I am keeping in shape for when I resume work. She kindly got another artist friend of mine to fill in for me on my column while I am dealing with all this. She normally keeps me hopping with deadlines!
First product - BodyGlide. Jaime sent this to me. She is a runner and knows about skin chafing. It is available at sports stores and apparantly has been around forever. When she bought it for me she told the guy why (because my poor skin is so sensitive - at least where there is feeling - most of the front areas of my little boobies are numb - it is only around the edges by my arms and under them that drives me nuts!) and he said she wasn't the first person to by it for that use (breast reconstruction/mastectomy) - interesting! Anyway it is not petroleum based so is not sticky. Comes in a stick form like deodorant and I just apply it anywhere my shirt touches me. For the first time since surgery I wore a regular shirt with a jacket last night and was fine because of my BodyGlide. They advertise that it is good for shoes to help prevent blisters and anywhere on your body that clothing rubs. Great product! Tomorrow I will review mouth care products! I know you just can't wait for that one! I am paranoid about not getting mouth sores from the chemo so it is of major importance to me!
October 5 - Product review - Biotene products today. All the info I have stresses mouth care more than our normal habits. One of the recommended products is Biotene mouthwash and toothpaste. Chemo can cause dry mouth so you don't produce as much saliva and then you are more susceptible to bacteria and infection. So these products are antibacterial and combat dry mouth. The toothpaste doesn't foam which feels quite strange and is also for sensitive teeth. I threw the box away but remember reading it doesn't contain whatever that foaming stuff is but that the foaming stuff was too harsh for sensitive teeth and gums. Still contains fluoride and has added calcium for some unspecified reason. I brush three times a day, floss at night and use the mouthwash. During the day I also rinse with saltwater. The mouthwash actually is great. Contains no alcohol so doesn't feel like your mouth tissue is burning up! It works because my tongue had been sticking to the roof of my mouth by morning. Probably due in part to all that anesthetic from the two surgeries and then the chemo. I wake now feeling quite comfortable. It also helps to heal minor irritations and it tastes pretty decent! Label says it contains four antibacterial enzymes which boost and restore the defense system normally found in saliva. Never realized before how important saliva is!!!!!!!!!
Went to Jen's new place for dinner. Good meal and nice to be out and about. She is decorated for Halloween already - I must get my stuff out! You know I just adore Halloween!
Still feeling just fine!
October 6 - Well drats! Got so tired this afternoon I had to nap, now! Even after the nap, I couldn't seem to summon up much energy. Wonder if I am just plain tired or if it is my body trying to rebuild the cells that were destroyed during the chemo? My nadir (remember our English lesson?) was probably Saturday so I guess I figured I would feel better each day after that until the next treatment. Since I felt fine, I guess I expected miracles!
October 7 - Still have that overall tired feeling. Wouldn't be tackling yard work today! Will concentrate on paperwork instead - I have mountains of it sitting here and business quarterly reports and taxes are due. Since I am also the bookkeeper for my business, I guess that falls to me!
Beginning to fret a bit over the hair loss thing. I am prepared with my wigs and I go next Monday to a program called Look Good Feel Better put on by the American Cancer Society. They have licensed cosmetologists and hairdressers there to show you tricks on how to look your best during chemo and after until your hair grows back in and your body is healed. They will cut and style one wig for you then. Romantic Rose is going with me to be styled. Just occurs to me I may have written this already - if so blame it on chemo brain! Anyway, I am physically prepared but I have a little flutter in my tummy when I think about it actually happening. This coming Saturday is THE DAY that it should start to fall out. All the other stuff, boobs, chemo - that is covered up by clothing or not able to be seen, but no hair - that is pretty evident to me exactly what is happening to me and my body. I've got my fingers crossed that since I have so much hair (I really have enough for two people!) it will just thin and I can wear the wigs for fun. Be nice, too, if I didn't lose my eyebrows and eyelashes. I have since found out that not everybody that loses their hair loses it everywhere! I wish "they" (medical people giving you instructions) would just finish their sentences when they say things like "You lose your hair - everywhere!" by saying, "although some people don't."
Go for another blood count test tomorrow. Be interesting to see the results. I asked if mine should be up again by then and the nurse said they should have begun rising again. I then find out from Lisa that hers were actually down from the week before! I am beginning to see what "they" mean when they say everyone handles chemo differently. I am hoping they are up so I can go back outside and play a bit in my garden. The weather in Florida is some of our best this time of year. Humidity is down, temperatures are down, rainy season is over and trees are changing color and losing their leaves, well a few of them here do that! We are in Central Florida. I am originally from Michigan so planted some trees in my yard that do change and lose leaves. Can't say I miss the slushy days from Michigan - I liked it when it first snowed and when it snowed on Thanksgiving and Christmas but then I was over it when it all turned gray and slushy and I had to go to work!
Well my hair is coming out. Pulled on the back and out it came. Looked like I had pulled on a brush with loose hairs. Was shocked! Tried it on the other side to be sure it wasn't a fluke and it wasn't, out came another batch. All I could say was, "Shit!" Sorry, sometimes that's the only word that fits a situation. I know, I know, this shouldn't have come as a big surprise. However, talking about it happening and actually having it come out in your fingers are two completely different things. I have been a bit weepy now and again this evening. I wrote the "beginning to fret over the hair loss thing" this morning and now here it starts to fall out tonight! Brenda Braveheart knows she is winning the war but is feeling badly tonight as to how it has to be fought.
October 8 - Had a real pity party for myself last night. Just cried myself to sleep. I think it is a culmination of a lot of things that just all came together with the beginning of my hair loss. Better today. Acceptance along with a bit of sadness has set in. Only a few hairs on my pillow. Took my shower and wet my hair and my hands had hair all over them. Shampooed and that wasn't too bad. Dried with a towel, again, not too bad. Put mousse in and tons of hair stuck to the mousse! Decided then and there to just blow it dry and forgo the curling iron! Went to get blood counts today and run some errands and Harold's job was to be sure I didn't shed so much that it was visible on my clothing. We were in a store where we knew the cashier and I showed her how my hair was coming out by just barely pulling on it a bit and got about fifteen hairs between my fingers. I kept checking the mirror in the car and removing the ones that were just hanging out away from my head, obviously not attached! When we got home I ran the brush through my hair to remove loose hairs and it wasn't a bad as I thought it would be. Sort of feel like when I brush the dog so she doesn't shed in the house! I am still quite amazed that yesterday morning all was fine, used mousse, curling iron - my regular routine - and that by the afternoon it had started to come out! Lisa told me hers began to come out on the thirteenth day after her first chemo and by golly yesterday was day thirteen for me, too! Every time I realize I am about to run my fingers through my hair out of habit, I snatch them away from my head as if I had been burned!
My counts were way down today, I will put the lowest they can go to in parentheses, white blood cells - 3.6 (3.0), neutrophils - 1.0 and they need to be at least 1.5 to get my next treatment but the nurse said they would be back up by then, hemoglobin - 11.2 (10), hematocrit - 32.6 (30) (this is the one I started out below normal and I also was below normal on the hemoglobin - these indicate I was slightly anemic even before I started treatment. They said to increase my intake of iron rich foods but not to go to a multivitamin with iron just yet.), platelets 320 (100). These counts mean that I must continue to be careful until Saturday and then I can go out in my garden and be mostly normal. They did say that this would most likely be my pattern but that there were still no guarantees and that I would be more fatigued with each treatment as all of the chemo drugs continues to build up in your system. I had a nurse today that I knew and I asked if it would be rude to ask for her for my treatment next week. She said that would be fine but that she would be on vacation but did give me the name of another nurse that was careful to spend time with patients and answer questions carefully. That is comforting.
After having my blood work done Harold and I left and this time went out the front of the Walt Disney Cancer Center (appropriate for Orlando, don't you think!) instead of through the parking garage. They have a wonderful library full of all sorts of brochures and pamphlets that are free. Armed myself with tons of new info to share with all of you! Got a neat pin that has two ribbons on it and it says, "start talking". I could have written the info card myself! Listen to what it said - "Based on the concept that knowledge is power, this program encourages women to learn more about cancer prevention and early detection, then to share their newfound knowledge. Remember that by sharing this information with your family, friends neighbors and co-workers, you will be helping to foster open, informed communication about breast cancer. Start talking. It could save the life of someone you care about." They are talking about all of us! I share with you and you are then sharing the info with your friends and family and hopefully it keeps going after that. The volunteer and I got to talking and I told her about the updates I send to all of you and she said I should consider speaking to groups at the hospital. I will, but later. Much too emotional right now. It is one thing to sit at my computer and write to all of you. If I cry, no one sees me and I can stop typing and come back later. I sometimes have a hard time actually talking to someone face to face right now, emotions are just too close to the surface, and even though I am used to speaking to large groups of people I am just not ready now. She had asked what type of cancer I had when I came in and I told her. She told us they had a lot of videos that were short that could not be checked out but we could stay and watch them if we chose. I was not going to do that but as I was looking at the material, she quietly put in a video on breast cancer survivors and their husbands. We began to watch it from the back of the room and finally got up and sat on the couch and watched it. Harold had his arm around me, we were holding hands and we both got a little teary-eyed. I tell him how wonderful he is and about the dreadful stories I hear about other husbands and all he ever says is that those other guys are just jerks! Such a sweetie he is!
On to cheerier topics. Bought some hats today to go along with my wigs. I know I won't always want to mess with the wig when I want to run to the store or something like that so wanted a couple of hats. I got two that are similar, one in denim and one in black velvet!!!!!!!!!! They look like a very feminine ball cap, sort of Crown area is fuller and higher and bill is not as big. I have no neck to speak of so must watch wide brimmed hats (which I dearly love!) as the back of the brim tends to rest right on my back instead of being suspended up in air looking graceful! It's the troll thing again, I'm afraid! The caps on the other hand look .sassy! Much prefer to look sassy instead of trollish! Bought a beautiful black and white scarf with roses on it so they can show me on Monday how to wear it.
Yikes, just brush some hair out of my eyes and eight came out! Spoke to Nurse Martha (former hairdresser) today and told her that if it started coming out in handfuls and I begin to look patchy that she needed to come over and just shave my head and be done with it. Actually might keep a fringe around the edges if that stays so I have something peeking out from under the caps. If not, I have a brown permanent Identi-Pen and will draw on wispy hairs by my ears if I have to! Saw a lady in the doctors waiting room today whose hair was still there but so very thin that you could see her skin beneath, so thin that the light reflected off her skin. Not sure I want to go that route. We will see though, won't we. I am quite fond of my hair. Eyebrows and eyelashes are still okay.
Thoughts for the day - I picked this up today along with all the other info from the library at the hospital. The author is unknown. Not sure if I agree with all of it all the time but I liked it and want to share it with all of you.
On that note I am off to bed!
October 9 - Still fixated on the hair thing. Not much on my pillow this morning but when I ran the brush through my hair I got enough to put in a baggie! It now feels a bit lifeless and it usually feels strong and springy. Since yesterday morning! I am still amazed at how fast all that happened once it started. It was just about thirteen days to the hour, too, as my treatment was in the afternoon! I read that this is one of the most devastating side effects of chemo. Don't know that I am devastated but certainly am upset by it. Also read that most people are more afraid of the chemo than the actual cancer. I can verify that! Hopefully sharing all the details will of my chemo treatments will help to ease those fears for all of you. Except for the hair thing, of course! I can handle being tired and a bit queasy for a day or two, but am not liking losing my hair. I can tell you I won't be participating in any more jokes about men who are going bald! On Tuesday when it started to come out, I thought of guys who have that happen when they are young, especially. I know how I felt and I know mine is going to grow back after I am done with chemo. I cannot imagine how I would feel if I knew it was to be permanent.
October 10 -Added more of my falling out hair to the baggie. Surprisingly, it doesn't look as bad that way as it does in the brush and drain! I mean, I saved both my daughter's teeth from the tooth fairy for 29 and 36 years so why not save my chemo hair? I cut another ½" off the top yesterday so I don't have to use mousse and a curling iron, just blow it dry gently and spray it with hair spray to hold all in place. Looks okay, but you know I am fond of "big hair!" I have decided that I want it to grow back in red and curly!
Feeling pretty chipper today. Looking forward to getting back out in my garden tomorrow. Just think - after next Wednesday when I get my second chemo treatment I will be halfway through!!!!!!!!!!!!
Something nice happened today. The hospital called because I had filled out a request form somewhere along the line asking for nutrition, support groups and pain management info. Don't need the pain info thank heavens! She gave me the name of the nutritionist and I will schedule a meeting with her, as I want to do what I can by nutrition to not have to get shots to up my blood counts. Apparantly they make your bones hurt! Plus the fact that I hate shots! Told her I was going on Monday to the Look Good Feel Better program and before we really got into other support groups the updates came up. To make a long story short as we all know I can get carried away by my explanations, she is now on the list and hopefully can pass on some of my info to people having a hard time with all this. Now mind you, I am having a hard time, too, no piece of cake here, but I feel I am dealing with everything in a practical, down to earth manner - I mean, you only really have two choices - get on with it or mope around for months. I do my fair share of moping but do not want it to consume my every waking moment. She thinks all of you are wonderful for sharing with others the info I share with you. Just in case I haven't mentioned it, I think you are all great, too!
Okay, off to finish putting out my extensive collection of Halloween decorations and getting ready for my weekly visit to Wings!
As always, love to you all,
Margot, a.k.a. Brenda Braveheart and Perky Polly (still a member of the
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