September 19 - Saw Dr. J and got another fill this morning. 80cc in the right and 50cc in the left. That is 20cc more in each than the previous fill. Moving right along. Right is still bigger than the left and he pointed out that I also have more tissue in the right since no lymph nodes were taken. So now I have six lop-sided boobs! He also said I was getting gigantic! He even managed to say that with a straight face! No bra of course, (what a lovely feeling) but I do wear a light shirt over my camisole because of all the rough terrain! Skin getting better about being so sensitive. Port surgery site still sore but didn't feel it during the fill. Good! I told Dr. J that I tell all of you about him and how he says I give him gas and make him roll his eyes and how I have to hold the bag of saline myself so I don't get spoiled - he said he did not roll his eyes and I told him he most certainly did! Harold said Dr. J mumbled something about getting written up for his bedside manner! I do so enjoy sparring with him when I go to my appointments. Aside from getting poked in the chest twice with a needle it is actually fun! I appreciate his "bedside manner" especially since I will see so much of him for a long time. That could be miserable if he wasn't a kind person!
Hoping to get some gardening in this weekend before I go to war with the cancer on Wednesday! Gotta pull myself up by the bootstraps and get on the offensive in this battle instead of the defensive! A good friend whose husband had cancer told me that her husband actually looked forward to beginning his chemo because he was actively doing something to fight it! What a great attitude! Made me really think about how I have been fearing the chemo and looking at it in a new light. I am waging war on any of those little devils that might have gotten away - that is my new approach! I have a new persona - Margot Warrior Queen! My army is the chemo, the oncology team and my own body's defenses against those little devils.
I have to add some info on the lymphedema that I forgot last time. I have mentioned this before but it was a while ago. No blood work taken from left arm and no blood pressure readings either because of the missing lymph nodes!
September 20 - Remember what I just said about skin not being so sensitive? I lied! Guess it is the stretching that does it because it is back! Couldn't wait to get home last night and get my shirt off and slather on the lotion and baby powder. Harold asked me how I felt since it was the night of the fill and all I could say was, "Skin, skin, skin!" Put pain medicine out to take that the doctor ordered for the first night and then promptly forgot it! Slept okay, so guess once I got asleep my skin calmed down. Feel fine this morning but am still good friends with the baby powder! To explain more about the skin thing, clothing feels like it is lined with prickers or coarse hair! Even the satin after a while. I made Jen look over my shoulder and she agreed, I do indeed have a chest again! The extra fluid in the expanders is lifting the second set of boobs off my chest/tummy area and that feels very good. Third set under my arms is still firmly in place though! I can now walk with my shoulders back and stomach in so I feel much less like someone recovering from surgery.
An off note on deodorant. Had to ditch the Crystal brand of deodorant - didn't work. Am now trying Tom's of Maine, guess the anti-perspirant part is what does most of the work! Out of the hundred or so containers of deodorant at Walgreen's, there were only two brands that did not contain anti-perspirant. Can't be blocking those pores!
September 21 - Nice day, got to be Greta Gardener for a while, felt very good. Nothing too sore, that feels really good!
A note here about the power of words. After my last update where I introduced you all to my various personas, a friend wrote and said to add another to my list - Brenda Braveheart. I was so very touched. Don't you know - I cried and cried but they were tears of joy and thankfulness, not sadness. I am changing my war name to Brenda Braveheart, Warrior Queen, I really like the sound of that! Then today I got a message from my friend who also has already gone through all of this on the upcoming chemo and she said, "Just think positive and know this is where the fight of your life begins and how the chemo is your defender!!!!" These are most definitely war words and I can feel myself getting stronger from just reading them and writing about them again. It really is amazing the power words have on all of us.
Reconstruction 101 Class - I want to clarify about the role of the expanders in my chest right now. Someone asked a very good question so I thought I would go over this again. She wanted to know if I was going to end up with implants anyway why were the expanders in there. I hadn't thought to explain that part better. If someone who is just going to have implants to make their boobs bigger, the implants would be inserted behind the breast tissue next to the chest muscle. They would be done. Voila! Bigger boobs. I have no breast tissue so they couldn't put implants on top of my chest muscle because then they would be directly under my skin with nothing between the skin and the implant and really, nothing to help hold them in place (and I do want them pointing forward)! There are two muscles on your chest that overlap and cross over one another. My new boobies will actually be stretched chest muscle (the top muscle under my skin is what you would be feeling if you touched my new boobies, and feel free to do so if you like, I won't be able to feel anything anyway it will always be numb) with the implant in between the two muscles. That is why it takes so long, you have to stretch that muscle and round it out and then wait for a month or two after all is stretched with the expanders to be sure it won't try to shrink back down flat. the expanders actually will stretch a bit further than necessary to allow easy insertion of the final implants (breast shaped instead of round) and to allow the muscle to settle in around the implant. Any questions? You know you are all free to ask me anything - remember knowledge is power over the unknown!
Poor Harold, he is feeling bad right now. He was helping me do yard work, me the light stuff, him the heavy so he got the job of trimming the hedges. I got tired and went in to rest and he stayed out to trim. I normally do all that stuff and have it just so stand back and look, clip a bit, stand back again, clip a bit more. Has to be just right. I should have known I was in trouble when I went in to find out where he was and he had the hedge trimmers apart and was sharpening the blades! I have not seen my hedges yet, but he is telling me to wait until tomorrow and that he thinks it was time they were all replaced anyway! I used to have this nice full hedge across the front with rounded bushes on either side of my studio window and then flat across under the window. I did tell him to make the rounded part a bit shorter, like maybe a foot, plenty of growth for that but he tells me now that there are only sticks there, that when he cut off a foot the bushes were empty of greenery!!!!!!!!!!!!!!!!!!!! Luckily, my outlook on life has changed so I told him they were just bushes and would grow back - of course, I haven't seen them yet I may have heart failure when I do. At least they won't need further trimming for a while! The reason I believe he feels bad down deep is that he can't really help me with the cancer and the chemo and then he messed up my bushes! I kept telling him they are just bushes and I was glad of the help anyway.
September 22 - Saw the hedges yikes! Looks like a crazy chainsaw person attacked my hedges! Before all this crappy stuff happened to me I would have had a fit. Ranting Rita would have been in fine form let me tell you, but ..I have fallen in love with my hubby all over again, see in him again the fine qualities that attracted me to him in the first place (of course, they were always there just taken for granted!) and realize he was only trying to do something that would please me. I have done all the yard work for as long as I can remember because I like to do it and he doesn't so the fact that he willingly helped me with no complaining deserves loving attention from Huggy Hannah. He and the rest of my family have been so fantastic through all this, makes it so much easier on me and much easier for me to keep my sense of humor through all this. If I didn't have them and their core support I don't believe I would be doing nearly as well. So, when you all tell me how well I am doing and about my positive attitude, a great deal of the credit goes to them. Another large portion of the credit goes to all of you and to all the others who continue to keep me in their prayer and thoughts. See, only a little bit of the credit is left for me. It is quite amazing the positive effect others can have on how you deal with the crappy stuff in your life.
Ordinary day today, went to the grocery store by myself for the first time since August 12! Weepy Wanda almost got me there! Had to pick up a prescription from the pharmacy, I go there all the time so they know of my situation, they are very nice people. Had to ask them to order in a tube of AYR Gel for me as per the oncologist. Almost lost it when asking for it because, WHAM! It all crept up on me out of nowhere - I need the gel because I will lose the hair in my nose too, and without your nose hairs dust and all sorts of things get in there to irritate your nose, it gets dry and it is painful. The pharmacist commented on what wonderful hair I have (meaning, too bad I will be losing it!) and I joked about my various wigs I shall acquire but I was having a bit of a time holding it all together. Weepy Wanda is trying to get to me tonight but I keep drawing on Brenda Braveheart to rescue me and so far so good! A friend of mine brought me a set of toy soldiers and Indians today to be Brenda Braveheart's army!
September 23 - Port site feeling a bit irritated today. Might possibly have overdone it with the yard work! Hard to remember it has only been a week since the surgery. Steri-strips still stuck on there so maybe they are causing the irritation. Hope so. Hate for me to be at fault! I see Dr. P (general surgeon) today to check the port surgery site and be sure all is in readiness for tomorrow.
This was shopping for cranial prosthesis' day! Nurse Martha and I went to Wig Villa, they are on the list of wig shops that cater to chemo patients and I must say we had a ball! I feel fine so that was great, too. We walked in and there were hundreds of wigs to choose from! I was like a kid in a candy store. I used to wear wigs in my 20's for fun. I spoke to the saleslady, told her why I was there and that I had my prescription. She was very nice and asked me gently how close I wanted to match my own hair color and style. I said, "Not at all! This will grow back, I want to have some fun!" After her initial shock wore off she told me to pick out four to start with. They have signs all over about not taking the wigs off the stands and that there is a 15.00 charge for help trying on up to four wigs and the price would be deducted from your purchase. I imagine to prevent people from just playing around with the wigs and then leaving. I spent about twenty minutes looking for wigs that caught my eye. We started off with a red, short, sassy, spiky/curly, messy number and it was love at first sight! Definitely a keeper. Sassy Simone for sure! Then tried a couple of long curly brown ones - no go - looked a bit like a troll! On to some medium length, slightly messy styles, just not me. By this time the woman knew that my sister was a former hairdresser and is the one who taught me how to cut my own hair. She let us have free rein then and went on to other customers! I really wanted some curls and happened upon one that was short, by then we had all determined I look better in short hair, and it was a two toned brownish/blondish color and had some longer curls by the front, sort of like when someone with long hair puts it up and some of it falls back around their face. Lots of hair but softy sexy. A bit messy but will look great with lacy, flowery stuff. Had to have that one, too! Romantic Rose is that persona! Martha then brought over a multi-toned, bleached blond number that had flippy, messy (I am really into messy!) Curls all in the back and smoother hair by the nape of the neck and around the face, still very separated looking though, and of course, messy! . Very dramatic looking. I said, no way that would look good on me and she said what will it hurt to try to on so .Wow! Of course I had on full eye makeup so my eyes really stood out, I was dressed all in black and the color was just fine. I looked very dramatic, I was totally taken by surprise. About that time the saleslady came out from the back and just stopped in her tracks. I'm sure she would not have picked that one for me either but she said, "That looks really great!" I said, "I know!" No modesty here, let me tell you! Just had to have that one, too! Sophisticated Sophia! Liked it so well that I had her cut all the tags off and stuffed my hair up under it to wear to my doctors appointment! Don't you know, the saleslady loved me! The red one is for everyday wear and the one I expect to wear the most, followed by the curly one and will probably wear the blond one at night when we go when I want to make a "statement." Wait till you see me! Whoo-Hoo! We then went on to my appointment. Dr. P walked in, paused and said - "That is definitely you!" Told him I just could not resist wearing it to see him! By the way, the port surgery was just fine. That sort of paled in comparison to the wigs, though! Home to see Harold's reaction. Walked in and he met me in the hall and said, "Well!" slowly, with a smile on his face. I tried the others on and he liked the red one and the blond one the best. He also tried them on and we cracked up. Then he said something to me that was so nice because it meant we were not all consumed with my "problems." My own hair was sticking out the bottom of the wig I had on and he said, "Are you going to have to cut your hair so it doesn't do that?" I looked at him and said, "Well, when I start to wear them for real it won't be a problem" and smiled at him. He looked a bit startled, he had forgotten just why I bought them because we were having so much fun and just smiled back. Jen came over and of course , tried them all on, too. She has come up with a great idea. There are three wigs and three of us so we are going to create a photo medley where we rotate the wigs from one to another so you can see how we all look in them! We'll do it with the digital camera and insert them into the email so all of you can see! What fun! Perky boobs, sassy hair - watch out! I almost forgot the best part! I told the saleslady that I knew I wasn't buying wigs made especially for bald people and usually you would hook the wig onto your own hair so how do I make it stay in place? Out she come with a package of ..TOPSTICK - clear hairpiece tape! Pretty much a special double-sick tape. I will tape the things to my little bald head! Get a mental picture of that , will you!
A note here on hair loss - you lose ALL your hair - everywhere!!!!!!!!!!!!!!!!!! No eyebrows, no eyelashes, no well you get the picture! So I bought some false eyelashes, too! Used to wear them years ago, even on the bottom so am just doing some time travel backwards here. Won't have to try and line them up with my own lashes so it will be much easier to apply them! Won't wear them all the time and maybe not at all but I am prepared just the same.
To submit to insurance they gave me an extra copy of the bill stamped with "cranial prosthesis" on it and I have to send it and my prescription to the insurance company to see if they pay anything. Nice if they do, but none were terribly expensive, all were synthetic and easy to maintain, swish and dry, so I will not be disappointed if they don't pay anything because I didn't go with and expensive human hair wig. Not me, I am into easy care! Just tossed this info in to show how it is handled by insurance. Will also let you know if they do pay anything.
Going to bed now to prepare for battle tomorrow. Drank a ton of water, ate lots of protein, fruit and veggies so am armed and ready. Wish me luck!!!!!!!!!!!!!!!
September 24 - Well the first chemo is done and I am still here! I just feel slightly fuzzy, that is all for today. It was not as I expected at all, thank heavens. The anticipation was much worse than the actual treatment.
Warning! Warning! Warning! With the Chemo 101, I plan on being very graphic and if this is TMI (Too Much Information) for you tell me to put you on the short list! This is the stuff I couldn't find any info on when I was looking. What exactly happens during chemo????????? This is what I plan on telling you so be forewarned!
Here is your first installment of Chemo 101 - Got there at 1:15, went in and got weighed (yea!) and had blood pressure taken. They gave me two empty vials for blood (more yea!) and took me back to talk to the doctor. Thought I would jump out of my skin waiting! Harold and Jen were both there which was wonderful. Briefly went over what was going to happen, reminded me that I would begin to lose my hair in two and half weeks, have to get blood drawn every week after the first treatment so they can monitor me and then only when I come in for treatment (every three weeks) after that. After talking to him, we followed him down the hall into the treatment room. Only Harold and I since there is only room for the patient and one visitor. He told them we needed reservations for two - like we were there for dinner! Dr. M is a very nice doctor, too! They pointed us to two chairs, one big recliner for me and a regular chair for Harold. I sat down and was really on the point of losing it but managed to pull all together. Probably about ten big chairs in there most of them occupied. All had bags of stuff hanging down hooked by tubes onto people in the big chairs. Not a reassuring sight. No one was crying or moaning though, some were sleeping with blankets pulled up around them, some were watching TV, some were reading or listening to something on headphones, some had hair, some didn't. Nurses were friendly and efficient. Now, first is blood work to see what I am before treatment. Hate those things. Well, we move on to some better tidings. She finds the port opening, pinches up some skin, shoots some Lidocaine (numbing medicine) in so I won't feel the bigger needle - didn't hurt at all (oh yea for real!) She pokes the bigger needle into the port that has tubes attached, that didn't hurt either but I didn't look very long! Now I find she will take the blood from the port from only that one needle AND give me the treatment without having to get stuck again! Oh, what wonderful news! She goes and runs the blood through a machine, brings me back a printout showing what I am and what they don't want the readings to go below, that is what they will monitor for the next three weeks to see how I do. Okay, now we are ready to begin. She hangs a bag that contains anti-nausea medicines - two of them and a steroid that helps the nausea medicine work better and a second bag of saline. She first flushes the port out with saline solution, not quite sure how that works but I only felt a cool sensation at the port site. When that is done she brings out three huge vials of medicine, two reds (Adriamycin) and a clear (Cytoxyn). These vials would be for elephants!!!!!!!!!!!!!!! That was a bit unnerving I must say. Looked like a LOT of medicine! The red stuff goes first through one of the various attached tubes and is administered quickly in about ten minutes. This one can cause mouth sores so she also brought out three freezer pops, the ones in plastic that you have to push up from the bottom for me to suck on during that part of the treatment. The medicine heads towards all the warm areas of your body so the cold freezer pop helps to divert it away from your mouth! It has been a very long time since I had one of those and had to be shown how to use it! So, I kept my mouth cold while she pushed that stuff through. Didn't feel anything at all! When that was done she shot the clear stuff into a saline drip bag and I just sat there for about forty-five minutes until it was all gone. Only felt a little fuzzy, like pain medication beginning to kick in and by the end my feet felt like they might be going to sleep but those we the only sensations I felt! No pain! Big time yea! I kept waiting mind you, sure that it was going to come sometime. After I was done she had me stand up, ask me how I felt, I said fine and she said goodbye! This next part is a bit personal, but interesting enough to tell you about. I had to use the restroom because that was a lot of liquid put into my poor body. I was aware of this next part going to happen but is was so weird - they call it chemo pee cause it is red! Just the first time as the red stuff works its way out of your system. I have to drink 6-8 glasses of water the day before and for three days after and to go to the bathroom a lot so that the chemo drugs and any little buggers they killed are flushed out of my system. Need to do that anyway but is of major importance now. Still no nausea or pain so, off we go home. Have been instructed to eat only sick people food for the next two days - soups, crackers, etc - no spicy or fried food. Had a prescription filled for Zofran (more anti-nausea medicine, got 15 pills cost me 9.00 and the receipt said I saved 518.00 with insurance!!!!!!) and must take it tonight and for the next two days, every eight hours, even if I don't feel nauseous. Left there about 4:00. Got home and got in my recliner, tired but not nauseous. Drank tea and ate some crackers. Then had some ginger ale and some saltines. Not nauseous but just as a preventative. Had some veggie soup for dinner, more saltines and more water, still no nausea. Along about 9:15 I could feel a little ball of it trying to form so popped that Zofran right in. 10:00 would have been eight hours since I had the first batch of anti-nausea medicine. Writing this update to all of you now and then heading off to bed. Harold had his first day of school tomorrow so I am so glad I feel okay so he can go off without worrying. Jen will be here in the morning to say with me until he gets home from school. I'm sure you can all well imagine how pleased I am to be able to write the update tonight because I feel okay. Brenda Braveheart signing off for tonight, the battle went well today. One down three to go.
September 25 - Still no nausea! Tired, but not sure if it is from the chemo or just finally knowing what to expect. That is a big relief. Went to bed at 11:00, up at 2:30 for a potty break, tummy felt a bit odd but decided it was from hunger not nausea. Back to sleep, up at 6:00, took a pill, visited with Harold before he left for school, had sick people breakfast and some tea, got back in bed and napped until Jen came over at 9:00. Going to go shower and then we will have some lunch and watch a movie. Not bad so far. I do know that the effects of chemo are cumulative so I will probably feel less okay each time but if I feel this good now I have high hopes for the others.
Rest of the day went fine. Got a bit queasy in the afternoon but ate some saltines and felt better. Not much energy. Am beginning to really see the difference between the words tired (go to bed and get rested and feel fine) and fatigue (hangs in there no matter what).
September 26 - Still no nausea! Once in a while I get a bit of a queasy feeling and I just eat a couple of saltines like yesterday. Just feeling listless and a bit woozy. I'll take that over nausea any day! Not much appetite either. Harold's first day of school went just fine. So proud of him. He will be home with me today watching over me. Nice feeling. Just so you all know, I fixed my own food today except for dinner so am able to be up moving around event though I have never been so tired in my entire life. Couldn't stop yawning! Slept a great deal of the time today.
Jen is an Excel geek (her words, not mine) so she made me a spread sheet to track water consumption, protein, fruit, veggies, calories, etc. Don't have to count anything, just have to make sure I am getting enough daily, especially protein and calories. Had to stop taking Vitamin C and Flax Oil with Omega 3 as these are anti-oxidants and would actually work against the chemo. I will look up a better explanation than this but the chemo destroys rapidly dividing cells but doesn't know the difference between good ones and bad ones. That is where the side affects come into play. White blood cells, red blood cells, hair, mouth, stomach, intestines, - all have good cells that get destroyed along with the bad ones so it is very important to keep nutrition way up there.
Weepy Wanda tried to show her pouty face today but I managed to banish her!
May I ask all of you a great favor? Would you please use the Breast Cancer stamps from the post office to mail your letters? I would like to see a cure in my lifetime so other women do not have to go through this fight.
Just had a nice dinner, took my last anti-nausea pill, am going to send this off to all of you and go to bed!
Again, thank you all for your prayers and support. I couldn't get through this without you.
Margot, a.k.a. Brenda Braveheart Warrior Queen
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