Margot Update 78
August 14 – I picked up a wonderful resource guide the other day when I was at the oncologist’s office. It listed just about everything you could think of to do with any kind of cancer and listed all the contact info. Info on how to find resources in your own community, finding reliable health info on the web, finding financial assistance, finding help with transportation, home care services, hospice, national organizations and a ton more stuff! Go to www.cancercare.org, scroll down and click on Visit Online Reading Room, scroll down and click on Practical Help then click on A Helping Hand for a free copy.
August 18 – I am reading two books written by Donna Sinclair, A Woman’s Book of Days 1 & 2 and she was writing about………….writing. She was saying that for a writer, whether it be a journal or a huge novel, is the same, that you first must go down into yourself and get to your real, true feelings. She goes on to say that a connection takes place with the images created by the writer and then the written text sets a rhythm with the reader’s own feelings and then comes recognition by the reader. But here is the best part – She says that the reader does not have to agree with what is written only that the reader be persuaded to care. I thought right then, (after I had a good cry!), “That is exactly what I want to accomplish with the BC Journals! Not that any one has to agree or disagree with what I write only that they have a better understanding of what cancer patients deal with so they can “care” about them as individual people and not pretend that everything will go back to normal once cancer is over (it never, ever does) and also that the reader becomes aware and takes “care” of themselves.” That truly, is my goal for these journals.
I contacted www.metromedicalonline.com, 866-774-9513, yesterday to get a lymphedema glove to go with the compression sleeve for my left arm that I have worn for the past three years whenever I fly. I had to increase my protection since the radiation to all my lymph nodes on my left side increases my risk of lymphedema. I spoke to an actual fitter and she recommended a product that they don’t carry on the web, said it would work just as well for me than the one listed on the web for 199.99, the one she is sending is 30.00. She was very helpful and friendly. So, if you are looking for medical supplies, compression garments, etc., I highly recommend them! I was very impressed!
Went on an outing last night and thoroughly enjoyed myself. Jen and I met up with Dr. J (my artist friend and plastic surgeon) and his friend and we all went downtown Orlando to the arts district to a function they are calling Third Thursday where all the galleries in this one building, that will also eventually include performing arts, are open and serving refreshments with all the artists there talking about their work and some artists actually working. We all watched a glass blower create a gorgeous vase from a blob of molten glass to a finished vase. Amazing! I even put my name down for a possible class! I am not interested in doing it for a living but I do hot glass in my kiln now and could maybe use some of the things I learned in my own work. If not, it would just plain be interesting to do! Jen and I talked to one artist for a long time about his incredible work. Dr. J (he actually does have a first name but he will always be Dr. J as that is what I have always called him. Harold has a friend who used to be his commanding officer in the Navy and even after twenty years the man’s name is Commander Neal! Just cannot call him by his first name!), anyway………….he set me up in one gallery but I managed to keep a straight face. Jen and I walked over to where he and his friend are looking at these huge, incredible, sculptures and he says to me (in front of the gallery owner) that he had just been told that the artists’ actually sleep with their stone until it reveals what is inside before they begin to carve. Now, I know that is high and lofty but I am low and practical and he knows it so I had to keep a straight face and look properly impressed until we all got outside. I must say, with all the pieces I have painted over the years I never felt the need to sleep with them first to be inspired. Dr. J works with glass and he, too, has never felt the need to sleep with the glass to see what it revealed! Part of the reason for going down there last night was to try and see if that would be somewhere that we could display our own work. I can tell you it won’t be in the gallery where you have to sleep with your art! Or, maybe…………………we have to come up with a more lofty explanation for our work! Maybe the stars have to be in proper alignment or something! Maybe we need to find a more “practical” gallery!
Since I knew I was going out last night I had to pay close attention to how I felt during the day. Around two o’clock I could feel myself winding down. I knew I would have to rest or I wouldn’t be able to go out later. So I was going to rest for one hour. Well………my body was having none of that! It actually felt like my “battery” had gotten low and I had to rest until it was fully charged! I’m telling the honest truth here, I could feel when I was done resting! I didn’t sleep, I just lay in the recliner resting hard. When I was done it was like a switch came on and let me know I was done! That is probably what has been happening all along, except that I was always asleep and woke up when the battery was fully charged! New persona…..Battery Charging Betty has taken over for Napping Nelda but is kind of pushing Napless Nellie around a bit! Is this some sort of contradiction – I can have an inner battery and feel it charge but think it is odd to sleep with my artwork????????????? Hmmmmmmmmmm…………………….
Also, I have been named the Fudge Nazi! If any of you have ever seen the Jerry Seinfeld episode about the Soup Nazi in New York you will know what I am talking about. If you didn’t behave at this guy’s soup restaurant he wouldn’t serve you any soup and say, “No soup for you!” My friend said that is immediately what she thought of when I said Nurse V would get no fudge from me!
Off later today to get my second MUGA scan to see if any more damage has been done to my heart. I have to say that if there has been more damage it certainly is not evident to me in the way that I feel. I get tired easily but that is an expected side effect of all the treatment. I won’t get the results until I get back from my trip but do not expect anything odd. Did I ever say that the results of the brain scan showed nothing unusual? That was good news.
Waiting now for an inspector to come and hopefully pass us on the gable dry-in. Truthfully we didn’t even know we needed that one! Hopefully get the other two out of the way next week and then on to insulation and dry wall!
Had my MUGA scan, can’t remember exactly what the letters stand for (multi-gated something) but it is to measure how my heart is functioning. Last time it was at 47%. You go in to a room, they insert a small IV into a vein (she was good, didn’t hurt at all!) and then they draw out a big ole’ tube of blood. You then go out into the waiting room with the IV thingee (just the needle end of it and it is taped down) still in your arm and wait for twenty minutes while they whirl your blood around and add an isotope to it that the MUGA scan machine reads. When the time is up you go back and they put your own blood back in to your body through the IV that now has the isotope combined with it. The tech said your body would not accept the isotope alone. Out comes the IV and off we go for the test. You lie on a table with your left arm over your head and you are hooked up to an EEG machine, then the machine slides you down under a big, square, flat surface that is almost touching your body. The flat surface gets angled to the left and then you just lie there for six and half minutes while everything beeps and it does its’ scan and you are done.
While I was there I got copies of the brain scan and the chest X-ray. The chest X-ray said “Findings may represent radiation pneumonitis or pneumonia.” I guess the radiation oncologist’s version of that statement was the “Changes due to radiation” that he told me about my cough. I have a couple more questions for him when I see him again. This time I WILL get a straight answer!
Brain scan has a couple of areas I want clarified by my oncologist when I see him on September fifth. I just like to understand what is going on in my body. It is your right, you know. You can always request copies of test results from wherever you had the tests done. I think you have to wait a bit until they have sent the results to your doctor. I like having them with me when I see the doctor and making them explain what all that means!
I came across this and want to share it with you. It is from a booklet I picked up somewhere. The author is talking about how many people want to “fix” someone’s pain when they are going through difficult times. She goes on to say that someone once said to her early on in her career, “I don’t need you to fix me. I just need you to listen to me.” I thought that was a great statement.
August 20 – I find myself in the position that Harold has been in for the past three years. He found out today that his father is dying and there is nothing I can do for him but just be there. It hurts to see him hurting and not be able to do something…….anything.
September 1 – What a lot of stuff has happened since I last wrote. I just returned home last night from attending my father-in-law’s funeral and helping out his mother in Pensacola. His father died the last day of the Houston Artist Expo Convention where I was teaching. He was a person who did everything he ever wanted to do in his lifetime and he and my mother-in-law were happily married for forty-five years. I was sad for everyone left behind.
I called American Airlines and they were fantastic about changing my ticket (I always purchase the non-refundable kind) and getting me to Pensacola the next day. In case you ever have to do that yourself this is the info they needed. The info from your ticket, the name of the funeral home, the address and phone number and the person who died and your relationship to them. I had purchased a multi-city ticket because I was supposed to go from the convention to visit my brother and his wife and then my dear friend (they all live in Houston) and then go on to Dallas to visit my daughter and her family and return home on September 4. I was amazed that the airlines recalculated my ticket and actually gave me a credit voucher! I did get to see my brother and have a most wonderful visit even though it was very short and my friend and I went to dinner twice and I went out to see her new house so I did get some visiting done. I really needed to get to Pensacola to provide support for my dear husband, this was so hard on him. It was hard on all of us as Harold’s father was a very dear man but Harold has always been there for me and I needed to be there for him. Jen drove up with him so he had family support but he needed ME! Of course, the whole family took it hard and my heart just goes out to my mother-in-law, her life has changed irrevocably and how well I know the feeling.
I had very disturbing incidents on the day I flew to Houston. I woke up and was propelled out of bed by the worst leg cramp I had ever had (up to that point!). My big toe was curled all the way back and the cramp ran all the way up to the very top of my leg and bent it at the ankle, the knee and at the groin. I could not walk on it (an of course had to go to the bathroom badly since I just woke up!) so I sidled to the bathroom like a crab, hanging on to either furniture or the wall! It hurt so very badly I was just about in tears. Took about five minutes before I could straighten my leg and walk on it. What a relief when it finally subsided. That was about five a.m. Got ready, went to the airport, sat around for a couple of hours and got on the plane for Houston. It is about a two and half hour flight. I was tired both from getting up early (going to bed late packing those last minute items) and the leg cramp attack. I had the whole row to myself and I had felt a little twinge of a cramp while sitting upright in my seat so I stretched out and put my leg up. Fell asleep. Woke with the same cramp I had in the morning AND one of equal intensity running up the whole back of my leg. I actually began to whimper from the pain! Thank heavens the seat belt sign was turned off so I heaved myself up and began to sidle? shuffle? drag? myself up and down the aisle. I did not care a bit what anyone thought, I just wanted to get the cramp to end. Up and down, up and down – people were beginning to look at me oddly and soon the flight attendant came and he could see right away something was wrong so he asked me first why I had on a compression sleeve and glove and then began talking to me about his aunt that has been battling inflammatory breast cancer and I began stretching my leg. After about ten minutes I was finally okay but I can tell you that was the longest ten minutes of my life! What if we were landing or taking off? The really bad cramps only happen when I am asleep so I am beginning to get really paranoid about falling asleep. I believe that Evil Leg and Foot Cramp Lucinda Faye has called in reinforcements! I see my oncologist next week for my Herceptin treatment and a three month checkup and we MUST find out why this is still happening and why it is increasing in strength instead of going away! I find almost nothing written about this side effect. That night at the hotel I soaked my poor leg in very warm water for about an hour as my leg began to stiffen up after the attack settled down and by evening I was very uncomfortable. The next two days I could hardly bend it and getting down to my classroom to teach was a real trip! I was okay teaching as I just had to move around the room and not actually walk anywhere. The attack happened Tuesday and it wasn’t until Friday that my leg loosened up! When I had to get back on that plane and fly to Dallas, change planes and then fly on to Pensacola I did anything I could to keep myself from falling asleep and I usually can fall asleep as soon as I get settled in my seat and then sleep right through takeoff!
Luckily the convention classes were great and I thoroughly enjoyed myself with the students so it took my mind off my leg. I got really, really tired but I did it! I have to say that I am a bit scared by this latest development with the severity of the leg cramps.
The cough is still with me but not as bad as before. I find it worse after I shower, when I talk a lot and after I eat! I keep Diabetic Tussin cough drops with me at all times and they really do seem to help. All during the viewing and the funeral I constantly had one in my mouth so I didn’t start hacking away because once I start to cough it is hard to get it stopped! I had to keep telling people why I was coughing so they didn’t think I was going to give them some dread disease!
September 9 – Well, it has been another long while since I wrote! That’s what happens when you journal and miss a few days. Then you think of all you have write to catch up and you don’t have time right then so you wait and then it just gets worse and then you find it has been a week or so and now you are really behind! Going to be the nutshell version since I am already so long!
I saw my oncologist on Tuesday and got some very good news. My MUGA scan came back with my heart function at 55%! Last time it was only 47% so I asked him how I managed to improve with all the chemo and radiation and he said that before, with the lower % he was not concerned because it always depends on who reads the tests. He said he expected this one to be fine and that this really is the reading he expected last time. So, I had no damage at all to my heart!!!!!!!!!!!!!! Yea! Yippee! Hurray! I told him about the leg cramps and that, on my own, I had stopped taking the diuretic that my regular doctor has me take along with my blood pressure pill. I read up on the medications I take and found that the diuretic can cause leg cramps! My oncologist believes this to be true in my case and agrees I should stop taking that drug. He said to tell my regular doctor that he (oncologist) will take some of the responsibility for the cramps due to the Taxol but not all of the responsibility! He said this with a smile and it was nice that he didn’t just ignore my opinion or lecture me about not taking prescribed medicine. He suggested asking about a potassium supplement for awhile as he thinks that the diuretic may have thrown off my levels, making them go up and down, since all my tests always come back okay for potassium. Anyway I have an appointment bright and early Monday morning to see about getting rid of that Evil, Stinking, Sneaky, Leg and Foot Cramp Lucinda Faye! She is like some kind of crazy attack dog sneaking up and biting me when I least expect it! I believe she is beginning to actually foam at the mouth! Okay, so much for the nutshell!!!!!!!!!!!!
Had my Herceptin treatment after I saw my oncologist and I only have three more to do and I am a free woman! So the beginning of November will the last one! Hurray! I wasn’t even tired this time but my red blood cells are down a bit and I have to eat some extra protein for a couple of weeks. The nurse went off to check with the doctor to see if I needed one of those Burning Aranesp shots so you can imagine my relief at only having to eat steak instead! I was already preparing my tummy area for the onslaught of that shot!
The rest of the days have been pretty normal. Working, running errands. NO NAPS NEEDED! So Napless Nellie has definitely replaced Napping Nelda! Oh yea! Haven’t even needed Battery Charging Betty!
Tomorrow is my birthday. Harold is taking me out to breakfast then off to buy stones for my new retaining wall on my patio (I told him how lucky he is I prefer rough patio “stones” over diamond “stones!”), then I will work outside for awhile and then come in and get ready to go with Jen to see an art exhibition of Grace Slick’s work and she will actually be there! In case you don’t know who Grace Slick is – she was the lead singer for Jefferson Starship/Airplane. Now she paints and is on a tour of galleries. Since I still listen to hard rock (I will until I am deaf or until I grow up!) I am quite excited about meeting her. I hope she has something I can actually afford because that would just be way too cool to have a piece of her artwork in my new studio! Then Jen and I are going out to dinner without Harold. He will be home working on the addition and is just fine with that as Jen and I like foods that he doesn’t and it is MY birthday so I will be choosing something exotic. Harold’s idea of exotic is a huge steak and garlic mashed potatoes!
September 15 – I must finish this update today! It has been a month! I MUST contain myself and be brief and to the point!
With the doctor’s okay I have stopped taking the diuretic but have continued on with extra liquids and eating bananas a couple of times a week. He doesn’t feel I need to take a potassium supplement, says without the diuretic I won’t lose it. Am doing those wretched stretching exercises and still have some cramps but they are from stretched muscles and am sore but not the “attacks” I had been experiencing. My regular doctor is a lovely man, he told me I was dazzling! Is he now my favorite doctor or what!
Lovely birthday. Good food all day, got stuff for my garden, only disappointment was that Grace Slick (what a character!) did have prints available but they started at $1100.00 – for just the prints!!!!!!!!!!!! Too rich for my blood but I did get to see her work and listen to her talk so I was pleased.
A dear lady embroidered a quilt block with my name and with an angel with Fiery Fiona hair and sent it in to be assembled into a quilt to be raffled off for breast cancer. How kind, and I have never met her. I am still amazed at the kindness of perfect strangers.
Hair – Well…………..!!!!!!! I got sick and tired of the grey. I know, I know, I went on and on about how I was going to keep it but………………I do not look good in grey hair so I got some color and dyed it back to red yesterday. I should say I dyed it back to “RED” because my, oh, my, aren’t I RED! Ronald McDonald has nothing on me I can tell you! The box said Intense Red and they weren’t kidding. Sort of a fuchsia red. So I am now Real Hair Fuchsia Red Artistic Looking Lorelei! But the story gets better. The guys with the insulation (yes, we have insulation and soon to have DRYWALL!!!) came to install it yesterday, two hours earlier than they said they would be here, and I had to answer the door with my stinky, wet hair as I still had twenty minutes to go for the color to develop and let me tell you it is no easy feat to act like it is normal to be walking around with your hair “curing” and stinky! No make-up of course, so I was not so “dazzling” right then! I got them set up and came out later with make-up and my Ronald McDonald hair and to their credit they didn’t bat an eyelash. They knew I was an artist so I think they just figured I was weird to begin with! Real Hair Fuchsia Red Artistic Looking Lorelei just doing her thing! Good thing I have all my wigs as I think I won’t be going out in public with this hair for a while. Still very short but I must say, even with the weird red it doesn’t look too bad, so maybe if it tones down a bit I may venture out in public after all! Spiky grey just doesn’t have the same impact as spiky red!
Feeling fine, I am! I am on a natural high right now as nothing hurts and I don’t have any doctor visits scheduled until the end of the month and that is just for Herceptin! Normal! I just love normal!
Photo of the Week/Month – Real Hair Silver Fox Serena. It doesn’t look too bad here because it is very short but as it is growing a bit more it loses some of its charm! Actually, it loses a lot of its charm! Click on image for a larger view.
Take care of yourself!
Margot a.k.a Perky Polly Keeper of the Perky Twins, Real Hair Silver Fox Serena, Evil Stinking Sneaky Leg and Foot Cramp Lucinda Faye, Real Hair Fuchsia Red Artistic Looking Lorelei, Real Hair Silver Fox Serena, Napless Nellie, Napping Nelda and Battery Charging Betty.
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