Margot Update 8
September 27 - Sort of a quiet day. Napped twice, it is just, all of a sudden I need a nap, now! Ate normal food, appetite okay, no metallic taste as yet, but cannot seem to tolerate strong cooking smells or strong smells of any kind. Makes me a bit queasy. Feel like I am recovering from having had anesthesia. No real complaints except I cannot quit yawning! Jen drove me over to her new apartment, we talked for fifteen minutes and had to take my first nap of the day! I had asked Dr. M about hot flashes since they do not want me taking estrogen at all, ever again! He said at this point they want to do nothing at all, just have to put up with it. Well .when I get tired I get cold, so I have been dragging a blanket around with me so the hot flashes are definitely not a problem! I track symptoms every day and the only symptom I have so far is moderate fatigue (spends less than half a day in bed is considered moderate!) They aren't kidding about the fatigue being the most common side effect.
Harold is working on my studio since I am not in it much these days. He had started to do a small renovation, taking out a closet to give me more room, then all this happened and he stopped. All I wanted was to have the closet out but he is creating an arch where the closet was, ending in fancy corbels! It will be quite stunning when he is done and if we ever sell this house, we will leave it as an alcove for a bed - gorgeous! He is so clever that way - he can do anything! I know he is finishing it up to cheer me up and I so appreciate that. I love creating no matter who is doing it! He also ordered me tow gorgeous books on Heirloom Ribbon Flowers by Helen Gibbs! We saw the demo on the Carol Duvall show ad I was very taken with the effects and, darling man that he is, he secretly wrote down the name of the book and author and went to order the book from Amazon and found that if you got two of her books they were each cheaper and he got free shipping! So I get both! Wait till you guys see me in Vegas!!!!!!!!!!! I will have to wear my Romantic Rose wig for sure with that type of clothing!
Learning to take it easy, I am. Today I felt the need to just sit down for a while so decided to crochet, (still working on that tablecloth!) hoping to be a bit productive. Well, the dog (DOG) has been following me all over, wanting to be near me at all times, guess she can sense something is wrong. She is 13 and we have had her since she was a puppy. She is part long haired Welsh Corgi, part Chow, little short legs and squatty body, just like her owner! Anyway, she is not allowed on the furniture unless you invite her up on a recliner during a thunderstorm. I sat down to crochet and she was just looking at me with those big, ole', sad eyes, I decided to invite her up and just cuddle with her. Cannot remember the last time I did that. What a nice peaceful feeling! Have a feeling I will be learning a lot about patience through all this. Don't have much of it now I can tell you!
September 28 - Today I feel a bit more like myself. Still a bit tired, but not like the past few days. Actually put on make-up today. Nurse Martha came over today and brought me another wig, Magnificent Monique! It is a page boy cut on a wide black headband, no bangs, and then the top layer is tiny microbraids! It is very dark brown. She also brought me a satin zebra striped shirt so I was sassy!!!!!!!!!!!!!
Lisa and Jen came over later just to say "Hi!" and I am pleased to tell all of you that Lisa has agreed to co-author a book with me on our journeys through breast cancer. Remember, she is the inspiration for these updates with you and acts as my mentor through all this. Our stories are very similar but have major differences, too, so should make a great book for women of all ages. Lisa is twenty-nine, so is a young woman (not hat I am an old woman, mind you, just older than Lisa!), a lot of her tests were opposite mine, and our lifestyles are different but she's funny and feisty so should just be an all around good book. She has been working with Jen in commercial insurance but is taking a job as a first grade teacher and has a degree in speech pathology. I didn't know that about her until recently but it makes great sense - she's a teacher, too!!!!!!!!!!!
Some fun news to share - I got a book in the mail yesterday from Plaid. I have a teapot in it from the ones we designed for the Plaid Tea at the Society of Decorative Painters Convention in Indianapolis in June. Even made the cover! They did spell my name wrong though, no "T" on the end of Margot. Drats! Nice book otherwise! It is called, "Join Us For Tea."
Chemo 101 class - Remember when I told you I felt fuzzy and woozy? Well, that actually has a name. Chemo Brain! Apparantly chemo can temporarily affect the nerve cells in the brain causing confusion and a feeling of fogginess. I must remember this - it could come in handy when I forget to do something, I will just blame it on "chemo brain"! This is almost as good as cranial prosthesis!
Okay, now I am going to talk about something rather personal. Constipation! If you have a delicate nature you may want to skip this part but do keep it for reference! Told you I would share everything important with you, didn't I? It is a way more serious situation now as the chemo just plays havoc on your whole system, then you are eating sick people food and not moving around much because you are so tired and BAM! Now it is a serious problem. I ended up in bed so cold that it took four blankets to finally get warm again. Will NOT let that happen to me again, I can tell you!
September 29 - Feeling completely wiped out this morning. That bout yesterday just about did me in. Please be sure to warn friends about to have chemo about that - the doctors just list it as a side effect. Hmmmmmmmmmpf!
Weepy Wanda was close to the surface today. Thought I was just fine, put some laundry in then dropped the box of soap powder, looked at the mess on the floor and promptly burst into tears! Harold was in the garage, too and said, "What's wrong?" I wailed, "I don't know!" and sobbed into his shoulder. Poor man - he just patted me on the back and reminded me we were in the garage and that our garage has never won any awards for neatness!
Today was also fill day! Whoo-hoo - I am getting there! 100cc in the right but only 60cc again the wimpy left side. Dr. J says it is just tighter on that side and that when I get close to the size I want to be on the right he will put less in the right and catch up the left. I asked why he just not add anything to the right for a while and he said that scar tissue builds up so fast that letting the right one rest instead of constantly expanding it would end up being painful! Not into pain so I will be lopsided for awhile. I must say, though, another fill or two and I will be moving out of the ITBC Club! Actually moving towards individual bumpy boobs instead of six separate ones! Not uncomfortable at all. Love that! Like I said, not uncomfortable but still feels like I have a Roman gladiator's muscle chest plate glued to my chest!
Went to the grocery store and stocked up because my in house week is practically upon me. I go on Wednesday for my first blood count test and the week in between treatments is when they are at the lowest and you are most vulnerable for infection. Must peel all fruit and veggies or eat frozen or canned! Eat only home cooking and avoid lots of people. Guess it's not a high price to pay to keep safe.
September 30 - Guess what I discovered today?????????? I can make my chest muscles flex like a guy!!!!!!!! Wait until I show you that little trick! I can make the left one just bounce - well still a little bounce - but a bounce none the less by itself. Can't make the right one move independently yet. Harold said he would teach me! He also said maybe I should get some pasties with tassels! My oh my - just try and picture that!
Ann was here today to clean. What a treasure she is - she spoils me, too. I love it! It's so nice, as I love her work and enjoy her company, too!
October 1 - 1 week after first chemo treatment. Well we all know I can never do anything normal or like everyone else now don't we! Are my blood counts down where they expected????????? No! Apparently, I am one of those people who will dive (actual word is "nadir" meaning the lowest point, Jaime says it is the opposite of zenith - a little English lesson thrown in today!) next week instead of this week. So, I don't have to do anything special this week except change appointments out of the "down" week that should have been the "up" week. Don't know how this will effect the chemo treatment as my white blood count cannot go below 3 or the risk is too great.
My white blood count last week before the first treatment was 9.5 - perfectly normal because nothing had happened to me to affect it. High would be 10.8 and low would be 4.8. This week my white blood count was 5.1, still within normal ranges. They look at five different things in the blood only two that I can remember what they are, white blood count and platelets. Platelets (cells that stop bleeding) are high 388, low 159 but mine cannot go below 100 to receive treatment. Last week mine were 285, today mine were 251. he did tell me he knows I will not need any platelets with my treatment , I believe because I will only have four. I will find out what the other three counts mean next time so I know and will pass that info on.
Just found the info on the other three - first one is NE levels (neutrophils - infection fighting white blood cells) high is 6.4, low is 1.8 can't go below 1.5. My first week was 5.7, second week 3.2. Second one is HGB - (hemoglobin - the oxygen-carrying protein of red blood cells) high is 18.0, low is 13.8, can't go below 10. My first week was 11.8, second week 11.3. Third one is HCT (hematocrit - the percentage of the blood made up of red blood cells) high is 52.0, low 42.0, can't go below 30.0. My first week was 34.2, second week 32.5 hmmmmmm, looks to me like I am low to start with! Must ask about that.
I did find out why I shouldn't garden my nadir week. I figured as long as I wore gloves and just pulled weeds or something easy I would be fine. No, they are concerned about insect bites or stings, like a bee - you could end up in the hospital because of the low blood counts and not being able to ward off infection! I have never been stung by a bee but you know I would if I went out during that week! Guess I will keep my butt indoors except for my morning walk for that week.
Also, found out why none told me about the dreadful constipation problem. They don't know if you will get that or dreaded diarrhea until you actually have the first treatment!!!!!!!!!!! Oh joy! What a choice! Now that I know, I can begin to take a stool softener the day before treatment so that doesn't happen to me again. Sorry, you must know these things, too!
Felt a bit fluttery today, maybe because of having to go have the blood work and they do it in the same room where you get the chemo, not the lab. That room makes me nervous! I was also ravenous today! It was like I could not get enough to eat! Was sort of hoping that the little appetite was here to stay. That would be a side effect I would keep!
Harold got out of school early today so took me to do errands. Could have driven myself but feels nice to be pampered!
October 2 - A completely normal day! Gardened, bleached the patio, cooked dinner, feel fine! I feel completely normal!!!!!!!!!! It's a wonder and I am taking advantage of each of these great days. I know they are temporary so are even more precious.
Am now a bonafide member of the American Cancer Society. Hmmmm, not necessarily a club I would have chosen to join! Still, I want to know about breast cancer, what is being done and what strides have been made.
October 3 - Well, I am finding that getting all the information I need from the oncologist's office is going to be a bit of a job. Was given a lot of written info besides the seminar we all attended and some of it is conflicting. Called about it and got a third version! I just called again on this white blood count thing as it started not to make sense to me. Everything I read says that within seven to ten days after your chemo treatment, your white blood count will be at its lowest, which for me would be tomorrow for the tenth day) and that is when you must be so very careful. Okay, got it. The nurse told me after my test that I could go on as normal this week so I assumed (I know, I know) that it meant mine would happen later than usual, especially since she said I didn't have to do anything different this week. I never saw this situation addressed anywhere in anything I have read. I certainly don't want to do anything to harm myself. This nurse explained (a bit condescending because "I was concerned", damn right I am concerned!) that not everyone's count drops to the danger point and that mine might never go that low. Since I was still within the regular normal range seven days after treatment I definitely won't drop into the danger zone. First I've heard of that! I mean that is good news but I had to pry the info out of them! So, all I have to do since I am "concerned" is to stay away from sick people, wash my hands a lot if I am out in public, if I eat at a restaurant (going to Wings tonight!) make sure food is fully cooked and don't eat any raw fruits and veggies that I cannot peel. I will stay out of the garden without being told. I can handle that! How hard would that have been for the nurse to tell me just that on Wednesday????????????? I will speak to the doctor when I get my next treatment because all this is very frustrating.
Anyway now that Complaining Clara is done, I will say that I am happy as a clam (why exactly are clams supposed to be happy, anyway?) to feel so good! Keep those prayers coming! They are working just great! Pretty amazing, since last week at this time I was soooooooooooooo tired!
Love to all,
Margot (a.k.a. Brenda Braveheart Warrior Queen who is winning the battle!)
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