December 15 – Been a couple of days since I wrote. Too much for my poor brain to handle until today.
On Monday afternoon when I came back from my lovely day out for tea I got “in a mood” thinking about treatment the next day. I do not want to be doing this! Ole’ Weepy Wanda was stuck to me like glue!
Tuesday was treatment in the afternoon and I had to begin by taking a blood sugar reading before I ate lunch and then take it again two hours after I began to eat my lunch to have a record of how I started off to see how the Amaryl was going to work. That was depressing in itself. I always go to my doctor’s appointments armed with my “list of questions” and I must tell you that if you do not want to be depressed, too, to skip the whole next section! I am going to go down my list of questions and give you the answers I got from the doctor. He did not win any awards today for good news I can tell you! He knows, though, that I want the straight truth and all of it, not leaving anything out and no sugar coating whatsoever! Sooooooooooooooooo that is precisely what I got!
MUGA scan stands for Multi-gated angiography. Test showed that my heart is at 47%. The testing facility uses 55% as their standard and Dr. M uses 50% as his basis for someone who has had the Adriamycin chemo treatment which was part of my first go round with this crappy stuff. This tells him that I cannot be given any drug like Adriamycin again because of the damage it did to my heart the first time. I have to say that I do not feel any different than I ever have and I do not notice any problems.
Q. Will the Decadron cause weight gain and bloated appearance?
Q. What would have happened had I received the extra treatment?
Q. Why am I her2/neu positive this time and was negative last time?
Q. Will each round of treatments get worse due to cumulative effects?
Q. Will my hair continue to grow on this chemo if it just thins?
Q. I have been having leg cramps and now my arches and toes have begun to cramp. I usually drink four ounces of tonic water a day to keep cramps gone but that does not seem to be working now and my calf muscles feel “jumpy,” like at any moment they were going to cramp on me.
Q. How many rounds of chemo total.
Q. I am trying not to be paranoid but how are we going to check in the future for a recurrence when I finish up with all this?
All this has left me with a very despondent feeling. I am telling this part of it because it is very important. I can be “positive” and “courageous” and all the other stuff but the reality is that I will be scared for the rest of my life and it weighs very heavily on my mind. This time around it is easier on my body but much harder on my mind because of the uncertainty. This is the reality of cancer and it really does stink! Moping Mona is a close companion these days, not too fond of her.
The Amaryl held my blood sugar down further than any time before, still a bit higher than Dr. D would like but I can’t switch my treatments to mornings until January 10 due to the holidays and the offices being closed for two Mondays so I hope he will take that into consideration before making me do the insulin injection. I ended up with only one high reading after treatment this time.
Factoids – In case anyone wants to know these things. This is what I get per treatment – Carboplatin 216, Taxol 130mg, Decadron 5mg, Zantac 50 mg, Benadryl 25 mg, Aloxi 0.25 and Herceptin 170mg.
Wednesday I saw Therapist Debbie and told her all sorts of deep dark fears and it really felt better to get all that off my chest. Just saying things out loud to someone who will not get their feelings hurt or cause them to be scared is really quite a relief. Even saying outrageous things feels good! I am going to see her every two weeks for awhile instead of my usual once a month. Like I said this time it is harder on my mind and I do not want to let any of this get total control of me! I really am not sure how well I would be coping this time if I was not talking to someone throughout all this. Soapbox Sue is in the building!
Now for a really bizarre story. After seeing Debbie I was running errands and I was at the bank. As I was filling out my deposit slip I felt a tap on my shoulder and a “Hi” and I turned to find a friend standing there who has inoperable brain cancer. She looks ill. We were talking about her treatment, not loudly at all but not whispering either and there were two other people at the table. All of a sudden this very tall, older man stepped over to us and said to my friend, “Do you have cancer?” We both looked at him as did the other woman at the table and my friend said, “yes” in a hesitant voice as what business was it of his anyway! Then he says, “You know there has been a cure for cancer for forty years, don’t you?” I thought, “Oh no, I simply cannot take some nut case now” and I spoke up and said, “I have it too (I know I don’t but I just wanted him to go away) and I am not in the mood for someone to give me advice” and he says to me “You can keep your cancer and I will talk to her (meaning my friend).” I was taken aback as you can well imagine and I heard the lady at the table suck in her breath. I really wanted to light into him but I told myself “you are in the lobby of the bank, ignore his stupid *&^%%&*” and I turned my back on him and walked off thinking my friend was right behind me. When I turned around I saw she was still there and he was talking right in her face. She is usually very outspoken so I was surprised to see her still there. I finished up my banking and she came over and I asked her why she stayed there and she said she didn’t know how to get away from him, he was so insistent. Do you know what he told her? Are you ready for this? He said that the cure for active cancer, any cancer, and to prevent cancer was to drink a glass of tomato juice with ten drops of hydrogen peroxide in it every morning, that there was a clinic in Mexico that has a 100% cure rate and that no one in his family had cancer and they all drank that concoction every day! That all the doctors and drug companies were using cancer treatments just to make money. Oh-My-Gosh! We went to have coffee and contemplate the utter strangeness of that encounter!
In the afternoon I had a massage appointment and before the massage I saw Dr. J. and told him about my talk with Dr. M. on the no accurate testing for recurrences and he acknowledged that unfortunately it was true. He thought I had already had my massage because my face was very red but I told him I had my treatment the day before and the next day I was always very flushed looking. Saw him again after the massage and we were all talking about the encounter at the bank. He said you really should not be drinking hydrogen peroxide but that the only thing that ten drops would do in a glass of tomato juice would be to fizz. By then it was funny but I can tell you I was not amused in the bank!
Today is my afternoon down day. Always feel okay in the morning but can feel the “fade” begin around noon. Slept all afternoon but kept waking up because I could feel those dratted cramps trying to get a hold of me. I went through my date book today and crossed off every Thursday that follows a treatment so I don’t schedule anything for those days. I feel okay by evening but if I don’t listen to my body and let it rest for those hours I drag around all of the next day, too.
Finding it hard to get in the Christmas spirit this year. Just seems to be too much effort. I told you Moping Mona is following me around!
December 20 – Treatment day, #2 of Round 2, only 13 or 16 more treatments to go!
These past days just sort of passed by. Didn’t feel so good for three days this time. Just “yucky.” Sunday and Monday I was fine and now it is Tuesday again! However, Moping Mona and Weepy Wanda seem to have taken a leave of absence and I have not missed them at all!
Harold put up the framing for the inner walls this past weekend and how fun it is to see my space defined. I puttered around in my garden on Sunday just to be out in the fresh air, it had rained for three days which never improves my mood! Talked to Sister Tina who lives in upstate New York and had to rub it in that I was outside in a T-shirt. Had to go further and tell her that it was a bit chilly here so I had to wear a T-shirt with short sleeves instead of no sleeves! Not sure she appreciated my humor!
Hair report – had to hide my bag ‘o hair from Harold and Jen, they threatened to throw it away! I told them I am not whining this time, just curious and not having a hissy fit like last time over losing it. Didn’t matter, they had that “look” in their eyes so I found a hidey hole for it! Still thinning but I am still wearing my own. Used to call it Ravishing Red-headed Real Hair Rita but now must leave off the Ravishing and it is fading to brownish red so I will shorten it to Real Hair Rita for now! Once I style it, I spray it with mega-hold hair spray so it doesn’t fall out on my clothes or in my food. Nice on my head, not so much in my dinner! Some is always on the pillow but not too bad. If I turn over in my sleep sometimes I get a stray hair in my mouth! Again, fine on my head but not so keen on it in my mouth!
Home from treatment. Not too bad this time. No Weepy Wanda, no need for Kerrie Kickass or Brenda Braveheart, just me. Took goodies in to the nurses, Dr. M and the front office staff. I am sure they get tons of that sort of stuff but I do appreciate the fact that they chose to work oncology out of all the choices they have. I have gotten the same nurse twice in a row now and like her a lot. Hope I continue to get her when I switch to mornings. Dr. M was on vacation and I had faxed him to ask him to up my Decadron back up to10mg again since that was the only change last week and I had three days of feeling yucky instead of an afternoon and decided I would rather face the insulin injection that be down for three days every week! Anyway, she told me she would find someone to okay it and she did. Found out something interesting today. The woman next to me had some unusual problems. They could not draw her blood out from her chemo port! They asked if that happened often and she said that it did. How odd! I thought the thing was located in a vein, how could you not get blood out? I wanted to ask but of course did not. Will ask the nurse next week though.
Another interesting thing happened while I was getting treatment. A friend gave me a book titled “The Christmas Hope.” I read fast and it was only about 200 pages so I finished all but the last couple of chapters there. I realized as I read that I had been allowing hope to fade for me. All of the bad news is draining and hard on the poor brain but I must never allow hope to fade like that ever again. One passage at the end talks about how a loss will always weigh on your soul but you must learn how to laugh and cry and seize every ounce of life from every day because you have to value time and realize how quickly it passes for all of us. I thought I had already gotten to that place but I think I lost my way for a while. We are in charge of hope. The only person that can take that away from you is you.
Made batches and batches of goodies before going to bed. Not to shabby for having a chemo treatment this afternoon!
December 21 – Played Santa’s elf today, flitting all over town delivering hand made goodies. I made fudge, toffee cookies, pecan date chewies and gourmet pretzel rods. First was Therapist Debbie’s, her receptionist is named Debbie, too, so it was off to deliver to the “Debbies’." Receptionist Debbie actually had something for me, not a Christmas gift, just a little something she bought for herself and thought of me so got me one, too. It is an essential oil “something.” Not exactly sure what to call it. It has a metal stand that has a glass dish on top and you put two drops of essential oil, she got me lavender to soothe me, and then you put a candle underneath to heat the water and release the lavender scent. She included a booklet on a practical recipe for getting out of trouble. Hmmmmmmmmmmmm. I will read it and let you know. She is always chatty when I come in for my appointments and genuinely feels bad if I look sad. One day she went back and told Therapist Debbie that she thought I was really down that day so Debbie would be prepared. That was beyond what she was required to do and you can tell that she is a really nice person. You all know from my journals how much I think of Therapist Debbie so of course these people needed my special “goodies.”
On to Dr. J’s office. Massage therapist Melinda is there, too, so I made lots of deliveries there. Dr. J and his staff have always, from day one, been so kind to me and since Melinda moved there I see them all often. Dr. J always gets larger portions than everyone else because he is a very tall man and he is “Dr. J!” He came out and I gave him all his stuff and he said he was going to kill me after the holidays when he gained weight after eating all those things and I told him he did not have to eat them himself, he could put them out for company and he said, “Yea, right, like that is going to happen!” and we all laughed. He called last week to get Therapist Debbie’s name because he knew how much I liked her and he has a patient that he says needs some help and probably has needed it for a while but certain things have just come to light. Of course he did not explain any of that to me, he just wanted to help this woman. This is one of the reasons he gets goodies, compassion for his patients far beyond what is required. That is why his office staff is on my favorites list, that kind of concern filters down from the top. His office manager found therapist Melinda and convinced her to join the practice so of course she had to fit in with everyone and she is a wonderful person as well as a great massage therapist.
On to the post office. I go to the same one and have for years. They remember your name and always have something to say besides, “Next.” Makes a difference in your daily life when people take the time to be nice when they do not have to do.
Took a break and went to Lowe’s and got darling Harold a gift card so he can go buy his garage door for his workshop after Christmas. I know we agreed not to get carried away this year but the man has worked so hard, he deserves a big gift! He will act mad but will be secretly very pleased! I know him very well after all!
On to the pharmacy at my local grocery store. They are great and have become friends after all these years. The stores are called Publix and are employee owned or some such thing. People stay there for years and years. Anyway they watch out for me (I’m sure they watch out for everyone else, too) and be sure I know what to do and what not to do. They always ask how I am and ask if Jen or Harold picks up my prescriptions, too. One of the assistants had breast cancer so we have a bond there, too. There is also a lady named Marie who cooks up good stuff every afternoon in the store and we always chat and I end up trying a lot of the recipes at home (which is the whole purpose of her being there, of course) but again, she is very pleasant, comments on what clothes I have on or my hair and when she sees me over in the bakery she fixes me a plate! I brought her in a pretzel rod and told her she was always cooking for me so I cooked for her this time!
I could just feel my Christmas spirit rising all day and realized it was because I was doing something for others that would cheer their day and it felt so good.
A very sad ending to today. Jaime’s father-in-law died today and she was holding his hand when he took his last breath. I feel so bad for her right now. He died of cancer and her mother is battling the disease at the same time. She says that she does not see the two in the same way, that she sees me as going through a really dreadful time but coming out of it healthy in the end and never having to deal with it again. She says it is like training for a marathon, you have to do certain things, whether you want to or not if you want to win. I am her mother, though, and it just breaks my heart that she has to deal with all of it at the same time.
December 22 – Today is my scheduled “down day.” Woke very early, around 4:30 heard the cat and felt my left leg trying to cramp, so I went ahead and got up. Fixed some goodies for Harold to take in to work, answered some email and got colder and colder. Turned our heat up to 73 and for me that is HOT! It got down to 32 degrees last night so it was pretty cold outside. Around eight o’clock Freezing Frieda had me in her clutches, even with two sweatshirts and my new lapghan! Being so cold is also an indication of how tired I am so I gave in, turned on the electric blanket, took off one sweatshirt and crawled into the nice warm bed. Left the blanket on the number 4 setting and slept for four hours. Now I am up with only one sweatshirt, heat still up though, and am just a bit drowsy feeling. It has been the afternoons in the past that I slept so maybe getting up so early changed my routine. I must say, it is not a bad thing to actually schedule a “down day” and know you are not going to accomplish anything great and to be okay with it!
Inner plumbing – haven’t spoken about this for a while and am glad to report all if fine. I tried to go the “prunes” route to see if I could get that to work but - Nope! So I went back to three Senna-S (generic for Senokot) tablets before bed and all is like clockwork! Aren’t you glad to know that! Actually I am ecstatic about it! Odd, isn’t it how the strangest things will just thrill you depending on the situation!
Hair – am contemplating beginning to wear the “girls” when I am out and about. Am really getting thin and will have to start wearing it combed down as the spiky look I like show my scalp and I am not so keen on that. No whining! Just the facts. I will still wear my own around the house and outside but am beginning to feel I look ill with such thin hair that is not how I want to appear to myself or to others. I may treat myself to a new wig since I will have to wear them for so much longer this time. What color should I get??????? Maybe blonde since Romantic Rose and Sophisticated Sophia are gone now and I only have red, black and red/brown combo right now. Maybe blond with brown tips, or red tips????????? Think of the possibilities! I will have to include pics when I wear Dramatic Drucilla and Joan Jett as I never included them last time.
Leg cramps – I have not had one since the doctor told me to increase my potassium with a few more bananas each week and to add the daily magnesium tablet. I can feel them lurking but I can handle lurking – don’t like those horrid cramps at all so am happy this regimen seems to be working.
December 24 – Joan Jett made her inaugural appearance yesterday as after I washed my hair and saw how much came out I was pretty sure it was going to be just too thin to go out and about. I dried it and sure enough – too thin. Put on Sassy Simone first, but for some reason was not pleased with her so tried Joan Jett and was satisfied. Joan is messier and suited my mood better. See, still no whining! I think having it come out gradually was easier than in huge clumps like the first time and I was prepared for this moment and I was not the first time. Speaking of hair, I keep forgetting to tell you this. I still have all my eyelashes and eyebrows! If they have thinned it is not enough for me to notice. How nice! Also means that all other body hair is where it belongs although I have noticed I have not had to shave in quite some time. Don’t shave my legs anyway so wouldn’t notice that. And, before you imagine me going around looking like a grizzly bear with hairy legs let me say that I have very little hair on my arms and legs to begin with. I could just imagine what you were thinking!
Jen and I ran some errands, had lunch, went to the grocery store, went back to her house and took a nap! She only lives ten minutes away from me but we both felt the need! Napped for about a half an hour, came back to my house, put away the cold stuff, put “Cats” in the video and climbed into my bed and napped some more and watched the movie! We were truly Lazy Lucy’s! Harold came home from working hard all day and said, “What’s this?” We mumbled something, he shook his head and went outside to work on the addition. After dinner we picked up speed I am glad to say. Jen and I made twenty gourmet pretzel rods to give away over the next few days.
I feel at peace right now and cheerful. I just finished straightening up my house (you know that makes me feel good!) and am headed out to do some gardening since I have not been outside in a few days. I am so thankful that I am able to function this well. Jen will be making dinner for all of us tonight (and a very fancy dinner I must say!) and I will cook tomorrow. Just the three of us this year so will be quiet but that is good this year. I have been thinking about all the wonderful people I know and how life is good right now even with the treatment. After all, I am the one who determines if my life is good or bad aren’t I?
Haven’t spoken much about my work, probably because I haven’t done much of it lately! But…I got a great phone call yesterday from one of the companies I work with and she wanted to know if when I felt better would I be interested in going to South American to teach? Of course I said, “YES!” She knows it will be a while and that is okay because they are not ready to implement the program yet and but the most important thing to me is that she doesn’t feel I will am finished and to write me off because I had a recurrence of my breast cancer. I have also been scheduling teaching trips on into 2007 and 2008 and all these people know of my recurrence and are asking me to book them anyway. That tells me that people are taking a much different outlook on cancer and its recurrence. It is crappy, but you get through the treatment and get back to your regular life. No one, at least that I know of, feels that I am any less than I was before, and aside from taking better care of myself and learning to say “No,” I am not. I am assuming, I hope correctly, that this is the general attitude these days. I am sure there are exceptions but I really think that all the talk about cancer in its various forms has helped immensely. No more hiding the fact of cancer in a closet and trying to keep it a deep dark secret. It is nothing to be ashamed of, it just happens. A fun thing here, I painted an ornament for the Library of Congress Christmas tree and saw a photo of it on the tree. How fun that was! Would like to do something like that again and actually go to the ceremony in Washington.
Back to the hair. It is late afternoon and I was getting ready to go to Jen’s. I decided not to wear a wig since it was going to be just us. I do love to cut my own hair so I got out the scissors and cut all the back hair to the width of my fingers. I thought that maybe if it were shorter there it would look thicker. I have always had a ton of hair right on top so that area is fine even if it is thin. If I totally messed it up, so what, I would just wear the wigs! I washed it, added volumizing mousse and dried it and by golly, it worked. I may just get some more wear out of it yet!
December 25 – Interesting day. Just the three of us, nice dinner. Then………Jen asked if I wanted her to paint my bathroom. Of course I said, “Yes!” So we took down all the stuff on the walls including the mirror and she painted. Took off the eighties looking backsplash from around the counter while we were at it. I will tile that area and it will be good practice for me. Well, if any of you have attempted home improvement projects you know that all does not go as planned. Behind the big flat mirror was a hole in the drywall from where Harold had re-plumbed the water years ago and we had forgotten it was even there. Of course I do not want to put that big outdated mirror back up so I figured it was a good time for me to learn to do drywall! He has the addition to work on but there is nothing for me to do right now out there and it is January so there is only so much I can do outside so I need a project of my own! Harold got it started for me. We did wonder if we were the only family who decided to renovate a room on Christmas Day! I gave Harold a garage door and he gave me skylights for our gifts!
December 26 – Felt fine today, applied a layer of drywall mud and decided to take the baseboards off in the bathroom, then off went the yucky tiles under the shower, I will replace them too along with the floor! We have put off working on this room because we want to do a complete makeover but now that we have started the addition I think it will be some years before we tackle this so in the meantime I will get some lessons in construction! Just call me Demolition Donna!
December 27 – What a day! Today was the last chemo treatment of Round 2. Whew! Only Herceptin next week so I have a couple of weeks of feeling decent. However, there was a downer time today. They always take labs to see if you are healthy enough for chemo. I have always been just fine so fully expected it to be so today, too. When she brought me the readout I said to her, “Everything okay?”, expecting her to say, “Yes”, she said “Mostly” and I said “What does that mean?” Well, my red blood count was down in the danger zone! Normal count is 14, while on chemo they like 12, if you go below that they watch carefully and if you get into the 10”s the next step, if it doesn’t stabilize, is a blood transfusion in the hospital! I was 10.1, down from 11.2 the previous week. The answer is a shot in the back of my arm of Aranesp, 200mcg (micrograms?) that boosts your red blood count. I HATE shots! You can’t get it put through the port, it has to be injected. And…..this will be once a week! You can imagine ole’ Weepy Wanda was climbing all over me at that point although I made her stay inside! And get this – they cost $7,000.00 each shot! No, I did not add an extra zero! The nurse said I would feel a lot better and I told her I didn’t feel bad now and she said that since it happens slowly I wouldn’t have noticed a big change but I will now that my red blood cells will be improving. She says I will have more energy. I did find out right before I left that when my counts reach 12 I won’t have to have a shot that week. There is nothing I can do for myself such as eating something or taking a supplement as that takes too long to have an effect. Very disheartening I can tell you as I am so careful to make sure I am eating properly and taking care of myself. One of those “out of my control” issues and Controlling Connie does like to be in charge! While I am talking dollar amounts, guess how much each complete round of chemo costs? $12,000.00. Yep!
One funny thing did happen, Dr. M saw me and said, “V8 would probably work.” I thought he was talking about my red blood count and I said, “Instead of a shot?” and he said “No, sorry, with the peroxide.” Of course, he was referring to the strange man in the bank with the cancer cure! I would drink a gallon of V8 a day if that worked instead of a shot but no such luck.
Oh, I found out about why they could not get blood out of the port on that lady last week. The port has valves that open and close and sometimes they stick closed so they can’t draw blood out. Before they give a chemo treatment they flush the port with saline which opens it up but that would ruin a blood test.
Came home and some friends from out of town came over and spent a lot of time oooooing and aahhing over our addition and our lovely guest bathroom so we were floating on cloud nine! We all went out to dinner and had a great time. That part is nice, that I don’t have to come home after a treatment and eat like a sick person for three days like I did last time.
December 28 – Saw Debbie today, nice session, not stressed at all, I know she is concerned about me because it seems every time I see her something else has happened that is not so nice. Certainly glad I did not stop seeing her when I started to feel like I wanted to forget about anything to do with breast cancer a while back!
Felt very tired today and actually had to lay down this afternoon and nap. On Wednesday! I am usually a ball of fire on Wednesday and down on Thursday. I thought I was supposed to feel better after that expensive shot! Hmmmmmnnnn………..maybe it doesn’t work instantaneously!
Hair report – it is wigs now everywhere but maybe the Home Improvement store. Just too thin and dry looking when I am dressed up. Oh well, I got two months out of it this time instead of two weeks like last time. Of course, since this treatment will last longer it will be wigs until probably September of 2006! Note there is still no whining, just stating the facts!
I know this is another long one, things should start to level off now that I am “in the groove” and I doubt I will be writing every day. Probably only when something of interest occurs and hopefully that is not on a daily basis!!!!!!!!!!!!!!!
I am ending this update with a photo of my Christmas tree (is that a “girly” tree or what!) and a wish for everyone out there that their holidays are meaningful.
Margot a.k.a. Perky Polly – keeper of the Perky Twins, Controlling Connie, Weepy Wanda, Red Hair Rita, Lazy Lucy, Joan Jett, Sassy Simone, Soapbox Sue, Moping Mona, Brenda Braveheart, Demolition Donna, Freezing Frieda, Romantic Rose, Sophisticated Sophia and Kerrie Kickass.
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