October 11 - Feelin' fine! Hair really coming out a lot today! Got a full brushful of it this morning! My little baggie is getting full! Still looks okay except I am going to have to trim the back at the bottom as instead of looking spiky (looks cool!) it is beginning to just look thin (does not look cool!). Going to have to wear a shower cap or hat when I am around food. All I can picture are the cafeteria ladies from high school! Anyway some hair fell in the lettuce today as I was helping to put our burgers together for lunch and Harold just calmly picked it out. We changed places so I was just handing him things instead of being right over our food. This shedding all over is worse than it coming out in a brush or in the shower!
Got a new project to keep me busy without causing me undue stress. Am having my web site completely redesigned and changing hosts while I am at it. It will be gorgeous! It has been the way it is now for years, has worked just fine, I have been too busy to really pay it the attention it needs and it is now in need of an overhaul. It is my storefront after all. Since I am confined to home for a good while, now seemed the ideal time to do this. Should be easier to navigate and to locate specific items. There will even be a place for my new magazine articles! Will let everyone know when the unveiling is! All I have to do is email her text and photos so I should be able to handle that part of it. Should be about a month if I can keep up with her!
People are so amazing! I got a package in the mail yesterday from a lady whom I have never met, only communicated through email, but she has purchased a lot of my packets and books and painted most of what she bought. She heard about my situation/illness/problem - I never know exactly how to describe what I am going through, as I don't feel ill, never did feel ill (except from nerves!), "situation" sounds odd and so does "problem" since the doctors feel they got all the cancer and the chemo is just a preventative measure. Anyone got an better answer for this "situation" I am going through???????? Anyway, it was all in a box about gardening, packed with bath goodies and included was an Angel of Hope by artist Susan Lordi who has teamed up with the Susan B. Komen foundation to eradicate breast cancer. The rough carved angel has looped wire wings, no facial features, a plain cream colored gown and both her arms are raised up in the air with clenched fists in a victory pose! Of course, I promptly burst into tears. I was showing Harold and he just left the room at that point. I had told him that crying was okay and not to worry about me then, worry if he finds me staring out a window for hours on end! Her card was especially nice as she changed the text to read "So many happy (painting) moments in my life were created by you." Needless to say, I was very touched.
October 12 - Well, I now have to wear a wig or something on my head. So much hair came out today I had another session with Weepy Wanda! Going to have to switch to a gallon bag soon! Using a sandwich bag now and it is bursting at the seams. I am really having trouble with this. It is just so visible and I can tell you I don't look good with no hair! I have bald spots!!!!!!!!!!!! And the rest is so thin I look sick! I will not shave it off though because I want to see exactly how long it takes to all come out. At the rate I am going it will be tomorrow! Somehow I thought this would be more gradual. Glad I am going to the Look Good Feel Better class tomorrow - I need it now! I am taking in Romantic Rose to be styled and I will have to remove Sassy Simone to put on Rose! Not gonna like that I can tell you - doesn't matter that I won't be the only one - doesn't matter at all - it is happening to ME and I am having a hard time getting past that! Poor Harold, there is really nothing he can say to me so he just holds me. I told him I was just going to have to have myself a good cry and then I would be better. A friend called and that was the best thing that could have happened as we ended up laughing. I have known her for 30 years or so and we used to streak her hair all the time when we were younger. Remember when you pulled the hair out through those plastic caps with a crochet hook????????? Well apparantly we did it once too often or left the bleach on too long - we did something wrong because when we went to rinse off the bleach, her hair started coming out in handfuls. Luckily we hadn't bleached everywhere, only the top and all of it didn't come out, but we were certainly scared! We both remembered that incident so she had some idea of how I feel. I am sure I will get used to having a bald head, (I'd better since I will have it for months!) but right now I cannot bear to see myself in a mirror or to have anyone else see me. Sounds so very vain but I can't help it. I read that this was probably the most devastating thing that happens from chemo and believe me, they aren't kidding!
Did a photo shoot today of lots of my artwork for my new web site. Was setting the artwork up on a white background on the patio floor and I kept having to pick off the hairs so I could photograph! The dog doesn't shed as bad as me!
Worked out in my garden today, am glad I got to do that as it makes me feel so good to be outdoors. It was very hot and humid but still felt good to be outside. I had lost a good bit of hair this morning and had a headband on to keep it out of my eyes when I was gardening so before I got into the shower I ran a comb through it to get the loose stuff so it didn't go down the drain. Had quite a bit come out but figured that was it. When I put the shampoo on and ran my hand over my wet hair it just came out in handfuls! Same for rinsing! Quite a shock that was. Then I carefully patted the wet hair so as not to disturb it any more and took the towel off. It definitely looked really thin! Couldn't leave it all messy so ran a comb through again to smooth it down and another big batch came out.
I am feeling very resentful right now - I know it is an odd word to describe this hair loss but it is the truth. I managed to get through having the mastectomies, dealing with the reconstruction, another surgery for the chemo port and then the chemo itself. I feel like just whacking someone or something because it just feels like the final indignity that my hair now falls out! I know the chemo is working to save my life, I do know that, but .. Not reasonable, I know but it is how I feel right now.
I have tied a pink scarf around my head and it feels okay but I think I will have to find something that suits my face a bit better for around home. It's the troll thing again! For those of you that don't know what I look like please go to my web site - www.margotclark.com - and click on my bio so you can see that really and truly I don't look like a troll except that I do need some height on my head. I can just imagine what those of you that have never seen me must think from all my strange descriptions I give of myself!
Had unexpected company drop by earlier today and I was good .I just grabbed Sassy Simone, plopped it on my head and threw on some eyeliner. Even gave them a showing of all my different wigs! So, I know I sound sad and bitter about losing my hair but I can still act goofy when I need to!
Going in for my "fill" tomorrow after the Look Good Feel Better class. Going by myself for the first time! Harold's last day of school for this section is tomorrow and Jen is off on Wednesday, Thursday and Friday to take care of her momma so since I will be out and about anyway I will just pop in for a "fill." I like Dr. J, he only sticks me with a little needle twice and is making me new perky boobs so I don't associate mean and nasty things with going to see him! I may go as Sassy Simone or maybe Romantic Rose - will have to decide what persona I feel like! Be the first time I have worn the wigs "for real" out in public. We will get pictures of me in the wigs soon. Didn't want to start wearing them until I had to.
I know I am going on an on about the hair but when I read about it, all the info said you would probably lose your hair and that it was devastating for most people. I want you all to know what it "feels" like to actually go through it - it's the "word" thing again - hair loss, devastation - I understood the words but not the actual meaning of what a person would experience. So, if you know of someone besides me who is going through this, be especially gentle with them now. It hurts inside.
October 13 - Much better today. Had a talk with myself about the hair thing. I decided to bite the bullet and get on with things! Woke Harold up this morning and said, "Look at me!" He did and said it wasn't as bad as he thought it would be- - Hmmmmpppfff! I walked around for an hour or so before getting my shower with nothing on my head but my thin, patchy hair! It will be all gone soon and I MUST get used to it as it will be this way for months! I can show family right now, maybe later for friends. It probably won't look as bad when it is all gone as now being thin and patchy but I am moving in the right direction anyway.
I chose to be Sassy Simone for my first wig day. Wore all black with a bit of black lace on the camisole. Sexy, sassy Simone! Remember Simone is a spiky redhead!
Full day today. My friend Marie came over early and we chatted and then went out to lunch. Left there to go to the Look Good Feel Better class. It was enjoyable but I didn't connect with anyone there. I think I was too cheerful! I can tell you I was the least affected by cancer and treatment than anyone else in the room so if I had gone through what some of them did or still had to do I don't know if I would be so cheerful . I did realize how important the updates are and the book later are/will be though. One woman had breast cancer, had 18 or more lymph nodes removed then a lot of radiation treatments. She told how she also got lymphedema from flying north for a wedding or graduation and no one had ever told her about wearing a compression sleeve and when she got back her arm was all swelled up and she then had to be treated for that! She did not seem up set but I was! I did not say anything (but you know I was biting my tongue!) because I could not believe of all those treatments and surgeries NO ONE had ever told her about lymphedema and how to avoid it!!!!!!!!!!!! Someone also mentioned that support groups were a great place to find out about the best mouthwash to use and little things like that! Again, held my tongue but thought to myself that their health care providers should have supplied them with that info!!!!!!!!!!! I understand that only 20% of chemo patients get mouth sores, which is great unless you happen to be in that 20%!!!!!!!! I did learn how to make the neatest turbans out of cut apart T-shirts! So cool! I will even wear those when I am out and about and don't feel like putting on a wig. Also learned to tie some scarves, which I will like to wear at home. Maybe later will go bareheaded all the time at home but for now I like to see something on my head. We each received a huge box of make-up and skin care products from very well known companies such as Estee Lauder, Clinique, Chanel, Mary Kay and more. Really nice things, too, not demo products. I was impressed and will remember these companies and their support when I shop myself. The volunteer cosmetologist thinned and cut the front of Romantic Rose. She really had much too much hair for my face. Scary moment when I had to take off Sassy Simone and put on Romantic Rose. I just did it, probably easier since half the women there had already lost their hair. Put Sassy Simone back on and off we went for the next thing on my calendar - my "fill!" By the way, everyone, including the cosmetologist thought Simone was really my hair! Lots of compliments - great for the ego which is dragging on the ground right now!
Am perking right up, I am! 90cc in each this time! Right one is getting rounder but still has a flat part in the middle, left one is catching up but is still rather square. Picture it - thin patchy hair, one square boob and one slightly flattened boob (not counting the ones still under my arms!) - will be VERY glad to get through this phase of treatments! Eye make-up of the utmost importance right now - seems to be the only recognizable feature I have left! Dr. J said the wig and color suited me and that I might just consider that style and color for real when my own grows back in! Hmmmmmmmmmmm .. go back again next Monday for another fill and then have to skip a week due to the low counts times. I will go the Monday before and the Monday after my chemo treatments. I no longer feel as if I have on a steel chest plate. Don't know when that feeling went away, just noticed it today! I feel now like I have on a firm underwire bra without the straps and back. No soreness, and my skin has lost that dreadful sensitivity! Hurray! I am VERY FIRM though! Definitely have cleavage!!!!!!!!!!
Off to the grocery store from there, gotta lay in a supply of food for the next few days when I am feeling so tired after the chemo on Wednesday. Got home and Harold came out to help with the groceries and he had gone to the barber shop and gotten all his hair cut off except for some fuzz!!!!!!!!!!!! What a sweetie! He said we can be twins! Really a very touching thing for him to do since he doesn't have a whole lot to begin with and is very attached to what he does have!
October 14 - Working like a crazy person to get taxes out and orders filled before D-day tomorrow. Ann here today, so nice to not have to worry about the heavy cleaning, I can manage to keep things picked up. Wore a scarf/turban thingee all day and felt okay with it. Quite comfy although I do resemble Madam Zora quite a bit and I'm sure if I go out like this people will expect me to read their palms and tell their fortunes!
Nothing of major importance. Being very careful to drink 8-10 glasses of water to be sure I am hydrated for the chemo. Also began a "constipation protocol" (doesn't that sound hoity-toity!) so I don't have that particular problem again! It actually means to take a stool softener twice a day beginning the day before and continuing through the two days after chemo. Feel fine, have energy this time as I am not recovering from having the port surgery so feel this one will be easier on me.
October 15 - D-day! Took forever to get ready - not sure why as all I had to do was put on my make-up and slap Sassy Simone on my head! I think it is very important to me that I look my best for these treatments so I feel I am in control and that all this will not get me down! Lost the most hair today so far. It just would not stop coming out in the shower! I must change over to a quart bag now. All this will not fit into a sandwich bag anymore! Still have some, don't know how I do , but I do! I was busy preparing charts to find out my "safe times" so Jaime and my friend Linda would know when they could visit. Also had an appointment with a nutritionist before the chemo - let's just fill up the day!!!!!!! Learned a lot form her and will pass it on when I go through all the info she gave me. One interesting fact - research has shown that people who eat eight or more servings of fruits and veggies per day have a lesser recurrence of cancer. I do not want to have to get any shots to up my blood counts so I am keen on eating right!!!!!!!!!
On to chemo. Not nervous today because I know what to expect. Very nice feeling! Saw Dr. M and got great news. I had asked him what they did after all the treatments were over to determine if the treatments worked. He said there was nothing he could do. I told him that was not very encouraging! He said he knew that and hated to say it but it was the truth. He said all the tests would not be able to show up single cancer cells. Then he went on to say that after my treatments end I will have a 90% chance of not having it reoccur! Well, that is pretty much the same odds a the general population!!!!!!!!! I won't have to take any ongoing medication either so that is a plus in my book. As to my "safe times", they are before the 10th day after chemo and after the 17th day after chemo. Since I am doing so well, Jaime and Linda can come anytime, I will just still have to be especially careful with my food during those times in between. What good news, I don't have to be a hermit! I will have to see Dr. M every four to six months ..for the rest of my life!!!!!!!!!!!!!!! Glad I like him, too! Didn't realize that, thought that for the first five years it would be every six months and then would taper off to maybe once a year for the next five years and then I guess I didn't think beyond that. Didn't ever think it would be so often and forever!!!!!!!!!!!!!!! Not complaining at all, mind you, I like to know that someone is watching out for me diligently! I am writing this about 7 p.m. Harold and Jen took a nap when we got home, I am the only one awake - something is wrong with this picture! Actually, I felt that I needed to catch up the updates before I crash. It is also so very emotionally draining on all of us even though it doesn't hurt me to get the treatments. That went just fine, just like last time but without my terror! Had to get a flu shot, too! I hate shots but I suppose it wouldn't do to get the flu right now!
Had some peanut butter and crackers as a snack and will have veggie soup for dinner as , once again, I am restricted to sick people food for tonight and the next two days. Firmly believe that keeping track of protein, veggies, fruit, iron, fiber - all that stuff, helped immensely in bringing my counts back up. I will end up being Nancy Nutrition before all this is over!
Took the Zofran, anti-nausea medicine, at 6:30 this time instead of waiting until 10 p.m. and Dr. M feels that will control the queasiness I felt last time. Will have to set the alarm to be sure and take it again at 2:30 a.m. so I keep it in my system without any lapses. Okay, by me, I can sleep anytime I want over the next few days and I would much rather be sleepy than nauseous! Amazing - all my blood counts were almost back to normal! In a week!!!!!!!!!! He also feels I will not lose my eyebrows and eyelashes for which I would be eternally grateful! Also, still no metallic taste in my mouth. They (nurse) said that usually happens to people who are getting more than four treatments although Lisa did experience that side effect.
Well, I am beginning to feel a bit woozy and Jen has made me soup for dinner so I am going to go for now. Thanks for ally the continued prayers and wonderful positive thoughts that are still coming my way. You see how well they work!
One more thing, I am still being amazed by people. I got a personal card today from the pharmacy department at the grocery store where I shop. They always send a message back home to me whenever Harold picks up any of my prescriptions. They got a card for me that said "I" in a few places and crossed that out and wrote in "we" and then they all signed it. Oh my, made me all teary and I had my make-up already on!
October 16 - Didn't go to bed until 2:30 a.m. as I was awake and that was the time for my dose of Zofran. Do not want that nausea to be able to get a hold on me! Up about 8:30 feeling pretty good. Even went for a walk around the neighborhood this morning! Jen went with me and said I looked like a movie star - I had on a black outfit with a bit of lace, my black velvet cap and big sunglasses! Am doing much better than last time. I think it is because I started the Zofran earlier and am eating a soft diet instead of a clear liquid diet so I have a bit more energy. About 2:00 p.m. I was in the recliner sound asleep though! I can feel "it" coming upon me and I have to take a nap, now! Worked on my table cloth for the rest of the day, I now have one strip done!
It is now 1:30 a.m. and I am hanging in there until it is time for the Zofran and then I will be off to bed. How odd the chemo makes me tired but also keeps me awake! kind of a boring day, but hey, I'll take boring over sick any time!
October 17 - Just felt crappy all day. No energy, Weepy Wanda was lurking about, depression hanging around, too. This hair thing is just so depressing. Dr. M. probably hit it on the nose when I told him how hard it hit me when I wasn't expecting it to when he said that up till now it was all internal and now the wigs and scarves and hats announce to the world that you are a cancer patient. Add that to the sheer trauma of losing the hair in the first place and you have quite the situation. Up till now it has been a private journey, now it is public unless I stay indoors for the next three or four months and that is not going to happen! I guess I enjoyed being selective as to who I told and, by the way, telling and seeing are also two different things. I will still tell anyone anything they want to know but self-image is taking a hit right now so the seeing part will be private, at least until I get a better grip on it all.
Sorry to end this update on such a down note but I pledged to be honest with all of you.
Love to you all,
Margot, a.k.a. Brenda Braveheart (who is still winning despite having some setbacks!)
After reading through the updates,
|© Copyright 2000
Margot A. Clark, Inc. All rights reserved
Website designed, hosted and maintained by Marian Jackson, paintwebs.com