Carly's next album "Into White"
In an 1984 Oil Genocide era
Were 7 million cops and kids have burned to death in fiery car wrecks.
Suppose your risk of breast cancer is 14%. If you smoke, your risk goes up by 32% (about a third higher risk). That means your risk of breast cancer from smoking is 32% higher than the 14% risk if you don't smoke. That's the relative risk increase from smoking. But how big a difference does a 32% increase really make for you? To figure out the change to your absolute risk, see what happens when you make your risk of 14% go up by a third: Multiply your risk of 14% by the relative risk increase of 32%. You get 4% (14% x 32% = 4.48%, or 4%). 4% is the size of the increase in risk. Add the 4% increase to the 14% risk you started out with, and you end up with 18% risk (14% + 4% = 18%),That means your absolute risk for breast cancer is 18% if you have no history of the disease and you smoke
("Into White")
Carly's next album "Into White"
"Into White" conjures a series of dreamy gentle moods in a collection of unforgettable tunes drawn from another Universe in another Era not our 1984 Society that has suppressed the Electric windmill car since 1980....
Jews will lose the State of Isreal because Into White was not Into the Oil Genocide Era....
Carly lost the cure for breast cancer for 7 million women, past and present and futured.....
And everything emptying into white - fiery gas tankers burning
And everything emptying into white - fiery gas tankers burning
I built my house from barley rice
Green pepper walls and water ice
Tables of paper wood
Windows of light
And everything emptying into white
A simple garden, with acres of sky
A brown-haired dogmouse
If one should drop by
Oil Genocide killers delanie would sleep well at night
And everything emptying into white - fiery gas tankers burning
And everything emptying into white - fiery gas tankers burning
A blue eyed drummer rehearses outside
A black spider dancing on top of his eye
Red legged chicken stands ready to strike
And everything emptying into white
And everything emptying into white - fiery gas tankers burning
And everything emptying into white - fiery gas tankers burning
Would sleep at night
MSNBC Matt Lauer taked an ambilent sleeping pill to sleep at night...
Nightmares... what men and women will do for oil money goes back to
Standard Oil Esso Exxon and yes the VP Rockefeller and NBC is Broadcasted from
Rockefeller Center.... ha
It happened in December 2000 that I was diagnosed with breast cancer.... Cancer, I can hardly believe it. Me, I have cancer, who would have thought. I feel fine. Went in for my regular gynecologist appointment and bang, she found a lump and told me to get a mammogram. This was my first knowledge of the lump. I hadn't felt it, nor had my husband. I was told it's best to get a mammogram at the end of one's period so it was scheduled for November 27 when they showed the lump and proclaimed it "suspicious". This was hard news but the worse was yet to come. A biopsy was scheduled next and I called my mother in New York City. I was a mess, I was scared. She flew out and was here for me for the news that I had cancer, breast cancer. I'm still in shock actually but have already gone for the lumpectomy where the took out that nasty lump. Next, who knows exactly. All this happened right before the Christmas and New Year's holiday breaks so I', kinda in limbo. I've been told I'll have to start chemotherapy soon and could also face a mastectomy. So guess what, we are going on a cruise. Forget it all for a brief moment before I lose my hair and face all the toxins......
I'm trying to be strong and face this with my chin up and a smile on my face but I'm terrified and not looking forward to all that will follow. I've had a few good cries and even a wee small panic attack. Heck, this is hard news to take. My mother lost her breast way back in the 1970's and doesn't really know what to say. Another friend has just gone through it all and is still on the journey to recovery. She has offered to hold my hand and guide me through, drive me to chemo and another has offered to help make me laugh. They say to keep your humour...but I don't feel like I have any....
Update- end of December
I went into the hospital December 14 th as planned for the procedure (operation is passe). First was the lovely injection of radioactive solution into my boob, four times mind you. Luckily they also had given me four shots of a local pain killer. The solution burned and stung....ouch. Then they used a fancy camera to record the image. I then had to wait in the waiting room for hours...nice chance to catch up on some magazines. Finally I was brought back into the imaging room for more pictures....and then into pre-op where I was suited up and iv-ed. But there was a problem...my blood pressure was sky high.... I had not known I had high blood pressure and maybe I don't but I sure did on Thursday! They medicated me and tried to bring my pressure down..also gave me some calming drugs to help my stress. After four hours it was decided not to do the surgery. Yikes huh. So off I went to a room to spend the night. They kept checking my vitals every hour and a half...so much for sleep. Now the trip was that the amount of drugs I was shot up with I should have been a mess and not remember anything, but, nope, not me, guess I was just way too stressed! Yikes. Surgery was on Thursday and went well. Doc took 26 lymph nodes and my lump. The next night was a bit hectic as well but thanks to the medications I slept pretty well considering. Friday morning I got my fist look at my poor boob...it's about half the size it was but my tattoo is fine. Tee hee! It was quite a shock seeing and I burts into tears while the dressing was replaced...poor Trent, he also was crying... I'm home now and I hurt, I feel fragile and anti social.... Finally we got the pathology report and it seems I might end up with a possible re-occurance in my skin so even after chemo I might have to have a masectomy. Not quite sure what I do next but make phone calls, talk to doctors, and figure out the plan for treatments.....sigh....
Update-Mid January
The other day I had a bone scan as part of this journey towards deciding on treatment and discovering where I am at in this cancer process. The bone scan involves injecting a radioactive isotope into my veins and then two and a half hours later running me through an imaging camera kinda like a hiuge x-ray machine. The stuff makes your bones and organs glow and highlights any bad spots in your system. The tech showed me the scans which looked pretty neat. I'd wished I could have had a copy to take home with me for artwork. The only glowing spots I could see were my bladder and kidneys, and bones. BUT, after alittle wait in the waiting room I was ushered into another x-ray room and 8 x-rays were done on my right arm/shoulder area. A "hot spot" had been found. I had to wait until my oncologist appointment yesterday to be told the results. It's not good....I have a hole in my bone. I now could be at stage 4 cancer rather than stage 2 and this supposedly is "incurable". I am in shock and despair. It is hard to think positive with this new report. A CATscan was ordered and I was immediately told to go to the hospital for the test. After almost three bottles of that lovely white barium drink Trent showed up crying. This was not the news we needed days before our anniversary. I finished off the last bottle and was off for the test. After two scans of the machine then inject me with iodine which floods my system with warmth and I feel like I am peeing. A very weird and disconcerting feeling, but the tech reminds me it's only and feeling! By the last time the other scans are finished I am freezing and shaking. This apparently happens to some folks whose regular body temp is a wee bit lower than normal. All was done and I went home with Trent stopping off for Chinese food for dinner. By the time he came home I felt awful as that barium in my tummy was heavy and making me cramp. Dinner did not sit well and finally after lying down it took the pressure off and I felt better several hours later. It was a yucky afternoon and ealry evening. And to top if off the oncologist suggests that I do NOT take the herbals I have been on. This makes no sense to me and I almost want to find another doc. But I will listen to her and ask more questions. I am scheduled for my first chemotherapy treatment on Thursday.
Update- January 28
Well, I went in for what I thought was going to be my first treatment of chemotherapy but my oncolgist had met with a "Tumour Board" and showed my scans and x-rays and now they have changed thier minds on what to do with/for me. Actually we still don't know. She will be showing all to another orthopetic surgeon as we might have to do a bone biopsy and most likely radiation there. Two different courses of chemo have been suggested due to the aggressive nature of what they said might be inflammatory cancer. So I await a phone call as to the next step. Could be an MRI or bone biopsy. Then depending I will start weekly sessions of Taxol and or a combo depending on what the radiologist and orthopedic want. I am still amazed that anything is wrong with me. After all I feel fine, I have no pain in my arm, heck.... The good news is that the CATscan gave me a clean bill of health and all my organs seem to be fine. Who knows..... Went for an MRI yesterday, oh that wasn't fun. Very loud banging noises and being cramped in a tube was a bit un-nerving.....
Update- February 8
Monday, I had my first chemo treatment and I'm doing fine! It was scheduled for 10:45 but the office was behind so I didn't get a needle into me until 12:30. After settling into a comfy chari with trent by my side eventually I was given the premeditation which eases nausea and other allergic reacations to the drugs. Then after about 30-45 minutes the nurse comes in with this HUGE RED hypo. I am not exaggerating either, this thing is for an elephant! It is 107 cc, or mayber is mgs. I dunno, it's just HUGE! This now gets injected into the iv port in my hand which hurt going in let me tell you! Definatly bigger than anything that has been stuck in me before. Ok, so now I'm seeing this scary red fluid going into me. "Humming bird food" the nurse says and I laugh. I am imagining this drug as missle seeking monsters eaking out my cancer cancer cells, and I am imagining the sunlight I see behind my eyes and golden light protecting all my other cells. It's hard to not sry just alittle as this is all so scary but my music helps me and Trent comes over every now and then to make sure I am ok. Then soon after the next drug is released in to the iv and enters my body. I'm told it might make me want to sneeze and cause some sinus pain but I feel no pain and only sneeze once about an half an hour later. Feels like regular alleries to me. Times passes and finally I am finished about an hour and a half treatment. In the car I feel clamy and hot and I couldn't geting a comfy position all evening..... Trent made me a small bowl of pasta and really I feel pretty good! So soon I will take a really cool pill that should help any nausea and hit the pillows. I'm happy, I did good, hubby has been nice tonight and has even told me I can't empty the kitty litter box anymore as it is a risk of infection! WOW! Cool! Thanks you Trent!!!!
ps- today I am feeling fragile and weepy. Had a bunch of nightmares this week and last nights one was so real and scary. I feel like someone kicked me....some days I am hopeful and ok, and today I am sad and scared. My hubby Trent broke down crying last night which was nice to see his caring but sad too. He hurts inside and can't believe I am sick.....
Feb.19 - Update
Yes, the tests showed that the tumor in my arm is cancer. A low grade chondrosarcoma. This is a very, very, slow growing cancer luckly. So I am facing surgey in the Fall on my right arm. The GOOD news I am probably NOT going to have to have an amputation. At this point I'm not really sure what they will be doing on me but I will be going to New York City's Sloan Kettering which apparently has the latest and greatest in bone cancer treatments. My oncologist said something about them going in and basically scrapping the cancer out and then rebuilding my bone with some sort of fake bone stuff. Yikes huh. I am lucky that my mother lives in NYC so she can be with me and help me through the next stages. I am so depressed today....apparently this is very rare and I am now being labled as a "Special Case". Well, hell, I always had to be different didn't I?!!!! I can't help but wonder what lessons the universe is trying to tell me here..... I'm trying my best to keep a postive attitude but shit, this is hard...I'd hoped so much that the thing in my arm was benign but no such luck.... Well, it's off to bed for me right now to take a nap, try and dream of better things, let my mind wander for awhile instead of sitting here feeling sorry for myself....whaaaaaaa. Well, the nap did not work so it was back to cleaning the house, doing dishes and then more email. Today, Tuesday 2/20, my hair is starting to fall out....just made an appointment for my hairdresser to shave my head bald!
Update-Feb.23rd
Well after close to a week of dealing with my hair falling out and me starting to look like a mangy dog I went to my hairdresser and got clipped. It was an odd feeling seeing my hair fall to the ground and the buzz cutters tickled but I wasn't as freaked out as I thought. It was actually kinda nice to be relieved of the distressing feelings of seeing my hair shedding and globs of it in my brush. This was a gift from my hairdresser, and with hugs and smiles I was off to pick up my wig. I HATE the wig. Sure it looks ok and is close to my style of teen age days but it itches and just plain old feels weird. As soon as I was finished with my errands I pulled it off and went bald the rest of the day. Burrrrr, it's a bit chilly with no hair. I've got to find some hats now as I'm still not quite ready to be bald in public......
Update-Feb. 27
I guess I'm on phase two of this cancer journey. Going bald and then getting shaved was quite the shock but I really wasn't as weirded out as I thought I would be. It's still really hard to look in the mirror. My buzz cut nubbees are also falling out and making my head itch. Hubby Trent resorted to rolling the sticky lint remover over my head and I am getting shinier by the day. Better for the little knit caps I got, less itchy. So yesterday I had my second chemo and they started my up with the Cytoxin first followed by the Adriamyacin (how do I spell that?) in two smaller hypos but it still looks scary. I just have to keep thinking hummingbird food and cancer seeking missles which will pop those cancer cells and disolve them out of my body. Hubby went with me and actually took a few pictures so I'll be posting those soon. I was tired and really sleepy the rest of the day,dinner was cooked up by Trent as comfort food, macaroni with brocolli. Chemos messes up ones digestive systems so one is constanly burping. Then dutifully took my medications and went to bed after watching all my favorite mind escaping sci-fi shows. Today I feel pretty good and am opting NOT to take the nausea preventing drugs. It's scary when you start doing the research on what all the side effects and precautions and warnings these drugs have. So while the chemo is especially scary and the medications I just have to be calm and assume the best, that they will help me and I will be cured!!!!! Course one is NOT really cured, just put into "remission"...sigh....
March 30th
So far, so good. I am so grateful that I am not experiencing nausea with these rounds of chemo. I have one more session with this set of drugs and then four more with one called Taxol. I am nervous about that drug as I have heard some scary side effects can occur like nerve damage in the finger tips... This last treatment of chemo has left me again with mouth sores and it's hard to taste foods and my tongue feels yucky, kinda like it is hairy and my throat hurts so I'm on antibiotics. So far I still have my eyebrows and lashes, for this I am ever so grateful! It's hard enough being bald top and bottom. And yet, I'm sure it will feel good once the heat of summer starts bearing down on us. My latest concerns are with the bone cancer. So far I have just been cruising along not thinking about it. But the other day I started to worry. How long will the surgery take, will it go anything, will I have to be in the hospital for days or weeks, will I be in an arm cast, or a body cast, will I have to be immobile, will I have use of my ar, my hand????? I started to get scared, after all I am right handed. All this unknown is driving me crazy. And I will not know anything until I go see the specialist in New York and that will not be until June or so. I should not worry about it as I can't do anything but it still looms in my mind. Well after getting over that I spoke with my mother in NYC and she told me her painter friend, Jane Freilicher loved my idea about decorating my head. So I got to fantasizing about making all the art I receive with my decorated head into a book. Maybe I really could get it published and have some of the proceeds go to breast cancer research. So now my mind is off and running, an art book on mailer and cancer. So many folks have told me I should write a book about my cancer journey, so here is the plan. Get my postcard made up and sent out to all my mail art buddies, send a bunch to my mother to give to her artist friends, and then maybe have an exhibition at a cancer care center or someplace here in Santa Fe and then start putting together a book. What's fun too is my friend in Dallas, Aardvark has sent out his own versions of my bald head to his contacts so I'm getting those in the mail too. They will add visual interest to the book idea as well. I'm I'm rolling and rocking with ideas! But what is hard is I have all this cancer treatments to go through...I have fears too, will I make it through, will I be ok, will I live to beyond 80 like I've dreamed? It's scary enough having one cancer but I have TWO! Dang it all, I still have so much I want to do in my life I can't let this get me down! Oh, I almost forgot, a very exciting thing happened. I got an email from a mail artist who is a professor at a university in Canada, she had seen my breast cancer awareness stamp and asked me to be in an art show she was curating! So not only is my art on display it also sold as well as two sheets of my artistamps!
Updated April 10th
Being stricken with this damn cancer is not a fun thing and somedays life just gets put on hold while I try and heal and rest. Had my forth chemo on Monday April 9th and now that puts me at the halfway mark! I am done with the dreaded Adriamyacin (still don't know how to spell that) and my chemical cocktail now turn to Taxol. I'm hoping I am like "most people" and have an easy time of it. Have heard some scary stories about side effects but I have hope. I am lucky that I have had a pretty easy time of it so far. All in all chemo isn't so terribly bad for me, I've had a handful of side effects the worst of it has been the tongue sores, can't taste food very well about 3-4 days after treatment and it lasts about a week. But I've got a new mouth wash I am hoping helps. OK, so enough about that. I made an appointment with the bone specialist in New York City and will make about a week trip to be wined and dinner by mom and her cousin Terry and consulted, and consulted. My surgeon still recommends we do a mastectomy and that probably means a double one. I'm not too weird out, I'd rather be safe than sorry and she promises she can save the tattoos! It might be alittle weird being flat chested the rest of my life but I'm not really thinking of reconstruction. So I'm be quite the pretty picture eh? Bald, fat, flat chested and tattooed. On a positive note I am getting excited about my dream of a book about my cancer journey with the bald is beautiful art work coming in for my mail art call. It could be a really wild book, fun to look at as well and a personal journey of the cancer battle. So if anyone out there has publishing experience and can lend a hand or some guidance in anyway I'm open. I'm way behind on my web site but will try and get a few of the new digital contributions to Bald is Beautiful up soon. And I still owe documentation for Message in a Bottle. Shame on me! But please forgive me, life has become precious, time even more so. I'd rather play, do mail art, love my animals and husband and escape with the television.....
Updated April 17th
Been moody lately, it's hard on the body, mind and soul having a "life threatening disease". I get these letters or emails from folks that say stuff like "heard you have been very ill" and it just boggles my mind. I am NOT ill, I am Not sick, I AM diseased. Now how does that make you fell reading that? Diseased...sounds awful. So my buttons get pushed when day after day I am asked by the many folks I come in contact with "how are you?". Basically it just makes me want to scream and yell "I'M NOT FINE, I'VE GOT TWO GOD DAMN CANCERS THANK YOU VERY MUCH!". But I politely answer I'm fine and you? They don't really want to know, it's just the way our culture is trained, everyone asks the same question, the grocery clerk, the paperboy, the waitress, the delivery truck man, etc. I can't blame them, it just pushes all my buttons. And so these feeling build up in me and I get moody. I'm fine, I really am, I just have this deadly disease which I have to beat. And not only one but two kinds...it's so weird. Wonder what I came in contact with oh so many years ago that got into my system and decided to wreck havoc with my cells. I wonder what lessons I am supposed to learn from this? Is it that they really are strangers out there who care like the wonderful ladies who send me care baskets and hand knitted hats, and the women who read my online journals who say I have inspired them to go get a mammogram, or the children in Belgium who draw me pictures of myself with tears falling down my cheeks wishing me good luck. So while parts of me feel shielded with an armor of strength, keep your chin ups, other parts of me a weeping at the kindness being showered on me. So some lesson is in receiving. And today I sit and be moody and that's ok. I am grateful that I have the time alone to sit and answer emails, to write letters, to play and make some art to mail. Thank you for listening!
Updated- Somewhere around April 30th
Had my 5th chemo on Monday, a new cocktail of drugs, the main one being Taxol which takes 3 hours to infuse. Plus and hour of premedications. I gave in and bought a portable DVD player so I could watch movies. I watched a cool film about and old director, James Whale of Frankenstien fame. It was called Gods and Monsters. The whole process yesterday took 5 hours...a long day. Hubby has been in a foul mood as he recently lost his dear old friend and mentor. But instead of dealing he is fussing at me and picking on me and making life a wee bit unbearable. I am looking forward to my trip alone to New York City soon. Poor fellow, I know alot of it has to do with the fact that he is a man and can't fix me or my cancers....The Taxol treatment went really well and I did not have any allergic reactions. I am crossing my fingers and hoping that none of the other side effects I have heard of don't show up. I am assuming since I did so well with the other chemo this will be a piece of cake. I have heard that folks do much better on Taxol so wish me luck! Looks like I will still be bald for months and the weight gain persists. I have even more steroids with this drug...sigh... Oh well, at least I am here and dealing and am alive!!I am continuing to get wonderful versions of my bald head decorated via the postcards I have sent out. It's a blast seeing what people come up with. Don't forget to check out the sitehttp://www.dragonflydream.com/BaldisBeautiful.html and download your own picture of me to play with.
Updated- May 24th
Just back from a fun trip to my home town, the big city of New York. Had to go to get a second opinion on my breast cancer and get an intial consultation on my bone cancer. Had some fun with mom, she wined and dined me royally and I got to take her out for a be-lated mother's day dinner. I had a quick visit from my old gal friend Jennifer which was great but all too brief. And then later that day a visit from my best gal friend from high school. We had not seen each other in 18 years!!!!! We had the whole day together plus going to see the Broadway performance of The Rock Horror Show. Oh that was so much fun, a real blast from the past. As in the movie version of the show we got an audience participation bag filled with a newspaper, a small flash light, confetti, a playing card, and a red feather boa. These are meant to be tossed into the crowd and we could sing along with the songs and dance the time warp again. At the end of the show on of the dancers kissed my bald head! We had front row seats and it real felt as if we were part of the show. Upon leaving the theater though we couldn't get a taxi cab, we waited and waited, and it started to rain. It was cold in NYC and I did not have the right clothes let alone a warm coat. I am much colder with my bald head. WE had to end up taking the subway and our cross town stop was deserted. Times like that I felt to venerable and sad that I am sick. Of course I don't feel sick but as all my feelings and fears are right up to the surface I even broke into alittle tears. Through out all this cancer journey I have been so strong and seeing my dear old friend and all that lies ahead of me, I just broke down a wee bit. I have not allowed myself to break down since December so it was good. Alone in the subway was not quite the place to do it though.....
During this visit I saw a well known doctor for his opinion of my BC and he saw no reason to do a mastectomy let alone two. He says he doesn't see this cancer as the bad one, inflammatory. I still have to see what my surgeon here thinks after the NYC doc and she spoke. I'm hoping they both agree. Then I had a consult at Sloan Kettering about what to do about my bone cancer. This part is pretty worrisome as even after doing an open biopsy while I am out ( this will be in August/September), we will not know the final analysis until a week or so later. So, the proposed is a scrapping out of the tumor which could go from stage 1 to stage 2,3,4 depending on the pathology reports.
Want more info, see http://cancernet.nci.nih.gov/dictionary/dictionaryfull.html#chondrosarcoma.
Or, heck, it could even be benign. The doc is fairly certain it will be the stage one version and the next procedure would be a freezing on the bone to kill off any cells that might be left after the scrapping out. Then they fill it with a cement like stuff and add a few metal pins. Sew me up and I'm in the hospital for about 5 days. Then depending on the final results I'm either good to go, or the have to do another procedure which would involved taking out what the just did, cutting my bone out and then replacing the bone with a bone from my leg. All of this just has me nuts with the fears of the unknown..Then on Friday mom took me to see Rent, another fabulous Broadway production. I loved it, poor mom hated it. It was a loud rock musical filled with hard life, drug addiction, AIDS, homelessness, artistic struggles in hard times. It reminds us to live for today, "no other day like today". Then on Saturday I finally wrote my will thanks to my financial advisor and lawyer who came to visit. Nothing like having a life threatening disease to get some of the serious things in life handled. Next came the tattoo convention at which I was photographed by Skin and Ink magazine. I guess I do look a wee bit different being bald and tattooed. Most folks here are trying to out do one another with being as wild as the can. So here I am upset about having two cancers, 15 pounds heavier thanks to the chemo/steroids, and having no eyelashes or eye brows and BALD, I get asked to pose. It really lifted my spirits! I visited with my tattoo artist James Kern and his twin and felt like a tattoo groupie. James is really good and it's nice to watch him work. He is actually gentle compared to some folks in the biz. Later a last dinner out with mom and back to NM at the crack of dawn. My friend Paula picked me up and we did lunch and the mall thing. But the real treat came when I went to the Aveda Salon looking for an eye brown pencil. The young lady there showed me how to do up my non existent brows with shadow. She also keyed into my baldness and cancer and gave me the products free and then gifted me with a full complimentary facial. Apparently Aveda is big on giving to women with cancer. After my incredible treatment she did up my brows again and asked if she could ask me a personal question. "What have I learned through this journey of cancer?" Or something like that. It brought tears to my eyes and then I answered to accept the gifts people are giving me without guilt. It has always been hard to accept gifts and with this cancer stuff I have been blessed by many a friend and even folks I don't even know, with gifts of hats, letters, food, email, etc. It has truly been a heart opening experience.
Updated June 25th
Chemo last Wenesday wasn't so bad....I just hate getting the needle stuck in my arm and I am still bruised. The infusion takes about three hours but since I handle it so well it was speeded up to 2 1/2. I tried to watch a moive called Painted Skin but it was in Japanese with sub titles that were hard to read. Plus it wasn't about tattoos which I had thought.... Taxol smells horrible and as soon as it is in my viens I can smell it for awhile, very weird... Taxol has some side effects which I am getting a few , joint and bone pain about two days after the infusion and this lasts about 2-3 days. I feel like and old lady. Due to all these months of chemo I am also thrown into pre-menapause. Hot flashes suck! Thank goodness for drugs as the one they put me on really helps. I was getting them about every 20 minutes. Now maybe one every two hours or so. What makes me nuts though is the no eyelashes and eyebrows. I tried to draw on some eyebrows the other day and it just looked silly. And this damn weight gain drags me down. I was pretty much ok with my weight as it was, I'd even lost some weight last year and was happy to be down a few sizes in my pants. And now I'm back up there. Apparently breast cancer patients gain, almost all other cancers lose. Lucky me. Oh well, I'm alive and kicking. The bald postcards are coming in and going out daily. I'm giving some away and all who see them are giggling with the possibilities of what to do to my bald head. My mother has even gotten into the spirit and promises to send me one. She is in France now and giving the bald heads to her artist friends there too. I imagine the future book will be a success! Sadly I keep hearing about more and more folks coming down with one cancer or another....it makes my heart sigh...when will there be a cure? Untill then, remember live each day to it's fullest, there is no day but today!
Updated August 6th
I have finally ended my chemotherapy treatments. I really did well on it, I was only a wee bit nauseous once, lost all my hair on my head, eyebrows and eyelashes dissapeared and down below on my privates. Oddly enough I still have peach fuzz on my arms. I gained over 20 pounds thanks to the steroids but all the doctors were fine with this. They kept telling me it was better for me to gain than lose. So now I'm getting my hair back, I have all of about 1/8th of an inch and it look like a serious five o'clock shadow. I've started radiation treatments which will go for 6 and 1/2 weeks. I opted for the little tattoos they use to line up me with hte machine exactly each time. They did 6 tiny little freckle like tattoos that hardly hurt at all. Some of the ladies on my Breast Cancer bulletin board said they killed but heck, I'm jaded being as tattooed as I am. But I don't really like the extra black tattoo I now have right up on collar bone. Radiation seems a breeze after chemo and I plan on feeling fine the whole time.I definitely have more energy now that I'm off the chemo and life feels good. I did have a bad day today I just felt so moody and angry that I ended up with CANCER. It's still hard to say even, I have cancer.....my financial advisor even was talking to me like I was going to die soon. That felt really bad and I reminded him that I plan on living until way past 80!
Updated August 17th
I started radiation treatments on 8/2, I'll be having the standard dose of 33 treatments, once a day except weekends through Sep.18th. I'm doing pretty well as far as I can tell. I have some soreness/tenderness in my breast and my arm is still swollen from all those lymthnodes being removed. I'm crossing my fingers it is not lymphedema.... I had a special massgae treatment for lymph drainage and am trying to do the same sweeping motions to hopefully re-direct the flow of drainage. I plan on using a permanet marker and writing on my arm "No needles, No blood pressure on this arm" when I go for the surgery in NYC. I also hope the surgeon can cut away from my dragonfly tattoo, so I'll also have writen on that arm "Cut on the dotted line" and hope for the best! Being in this fight with cancer has definatly changed my perpective on life. I feel each day is a gift and should be lived to it's fullest. I also finally know what I want to do when I grow up! I am in the process of forming a foundation to make up and give out comforting, pampering gift baskets to the newly diagnosed with breast cancer.I already have been given office space, and have three companies willing to donate product. I believe I will be up and running by the end of the year. I am so excited and everything seems to be coming together. Stay tuned for the progress of Dragonfly's Delight's.
Being that I do mail art and art is my life I've issued a mail art call to decorate my head add hair, horns, wings, etc.
In the meantime, you ladies out there who have not ever had a mammogram, go get one! Do your monthly breast exams and please be aware that one in 8 women will develope breast cancer. Let's find a cure soon people, this sucks.....
January 2002
I'm quite stressed these days, finally after just over a year of healing from cancer I have touched my anger around . I had to stay strong, act ok, struggle along with disease and now that I consider myself cured I have go inside to sob deeply, it sucked having cancer!!!! I am forever changed, I am not ok.....and yet I am. I am different though. High blood pressure, menopause brought on by chemo, hot flashes, cough, 30 or more pounds heavier thanks to the steroids in the chemo and on many medications...I feel like a drug addict..... Side effects have lessened due to going off Tamoxifen and onto Arimidex thankfully. But now I face the next stage of healing, feeling the anger, the why me? God damn it I didn't need this, deserve this, create this, fuck!! Ok, enough of that or I'll start sobbing again...too late...I'm in tears..... Ok, so I've cried, blown my nose, come back to calm...sort of. Hearing the words "you know it's probably cancer" and going into shock, denial, action, surgery, chemo radiation, then bone cancer, more surgery and physical therapy, on and one...it's been compared to the mythic journey of the hero's tale. You know, initiations, the journey, the battles, triumph.... Trent's and I just had our 10 year anniversary. He has been mean lately, he can't deal. He sits and plays a hand held video game for hours and in the meantime there is so much that can be done around the house if he put himself into it. But sadly after 10 years I know he never will so I will hire someone. I asked him what he wanted for an anniversary present, he answered a healthy wife. Sorry, that I am not. Did he ask me what I wanted? No. So I asked him for something he has promised me three times to complete. Wonder if it will happen? Nope but he did get me a sweet little gold charm, a postcard saying I love you. We, or opps, I mean me, I took out a loan to build myself a studio attached to the house. Trent made up some simple plans over a year ago and lost them. I spent the afternoon doing print making. I believe I produced some powerful work as I have touched my anger, my sadness, my fears of living with and beyond cancer. Wish me luck, light a candle of me.
Brushes with fame a 4:00 am ramble March 10th
I was just at a cool conference in Philly about The Young Survival Collation which is dedicated to young women who have suffered through breast cancer. Check out this web page. http://www.youngsurvival.org/ I'd like to open a branch of this organization here in Santa Fe soon. As if I had nothing else to do besides have an art show 3/22, run my non profit, do a koi show 9/22, do my taxes, clean up the house, fuss at the Jag dealer, get the broken things fixed around my house, design an addition for my studio, etc, etc , etc.
Been really jazzed about my foundation, in fact that why I can't sleep tonight, I am just wired. Good things are happening in my life and I wouldn't be surprised if Oprah called me up for a spotlight feature on her show. Seriously! I am losing weight, dyed my hair red, am cleaning out old stuff and learning how to ask people for money point blank. And guess what, it's all very exciting and challenging. The wish list for the foundation is HUGE, and I must remember that as I try and tackle it all by myself. One of the items on my wish list is a helper. I need a personal assistant. Ever watch that old tv show Fantasy Island? I need Tatu. Giggles, I think I am obsessed with this new dream as almost everything jazzes me and is added to my wish list. For example, we will need a delivery vehicle for delivering the gift baskets to the hospital and other distribution points and so I'm wishing for a PT Cruiser that we can get the Espanola kids to trick out as a low rider and the paint it up with dragonflies as a school art project to benefit the Foundation.
And so as with my life these days I am always talking to folks about what I want and what we need and the ball just keeps on rolling and picking up speed. I never thought of myself as a fundraiser, let alone a writer or a public speaker but I'm here now. Remember the old days when I was quiet, shy and always bored? Well those days are gone forever, I'm going to famous. I can't help hearing the words to an old song that goes something like this....gonna get my picture on the cover of Rolling Stone. Heck, see that, another good analogy, rolling stones, that make a good name for a rock band huh? Oh you say there already is one well heck I knew that. Oh and that reminds me about my case of identify theft. I trademarked my business name Dragonfly Dream, years ago and yet folks keep on stealing it. I am in battle with several folks on this issue right now. What's the big problem you say? Can't there be room enough in the world for two Dragonfly Dream's? NOT!!!! Imagine how Cola Cola would feel if I went out there and started up a soda company called Coca Cola's? They would be all over my ass in a heartbeat. Oh and speaking of heartbeats that reminds me of another song. "the itsy bitsy spider went up the water spout, down came the rain and washed the spider out....." One of my best moments in life was way back when I owned and ran my shop called Spirit's Rising in Oak Bluffs, Mass. One day while folks were shopping before dinner a little girl became very unhappy for what ever reason it was that ailed her and she broke into a crying fit, a wee bit of a temper tantrum and her mother was having no luck at all quieting her. And then suddenly from the corner of my eye I spotted a tall and lovely women turn around and come over to the little child. She asked the mother if she could help and the next thing I knew was she was singing the itsy bitsy spider song and I think she even picked up the little girl in her arms and comforted her with her voice. She was like a nightengail in the mist, a beacon of hope on the harbor, my mother singing to me, my mother who sang to me in her womb, my mother who abandoned me because I was a love child. And I cried with the same passion of abandonment and anger that the woman with the lovely voice was singing to this child. Now over 15 years have passed and I always smile when I hear that song. I feel as if a Guardian Angel of sorts touched me on the shoulder that day, and that angel was Carly Simon. Carly if you are out there reading this someday please know that you truly touched my heart. And as we all know how small the world is I had the opportunity to be in your house one day as my friend Barney Zietz was showing me some stained glass he did for you. I felt so comfortable in your home as we had the very same tastes back then, it was kinda haunting. Perhaps we were sisters in another lifetime..... I never thought I would be a writer or a singer or the head of my own powerful business and founder of a foundation either. Oh my that sounds bad, but here I am a mover and a shaker like I never thought I would be. I think I'll add Carly Simon and The Manhattan Transfer to my wish list. Wouldn't it be great if I could entice them to join my team and do a free concert as a donation to the foundation. Yeah right I can hear you say, but shoot, stranger things have happened. Did I ever tell you that Annajean Brown coached one of the guys in Manhattan Transfer? Yep, she was one of his voice teachers. And now here I am wanting to learn how to sing. Here I am remembering old times and old friends. I miss Annajean, she is locked in her past too now I think. I miss Jan Cable too, and speaking of two, these two lovely ladies were also my heroes. I called them my second moms. Did I ever tell you of my love for vintage aircraft particularly the planes of World War 2. Well I bet you didn't know that a beautiful woman taught me how to fly and airplane. She was one of my heroes in life too. Caroline Cullen passed away many years ago but she lives deep in my heart. I recently saw her name in a museum honoring the women pilots of WW2. So why am I talking about airplanes? I guess I want one! Now wouldn't that be a nice dream come true, my own corporate jet. Might as well add in a pilot too! Bingo. On now there goes my mind again wandering and singing old show tunes again. And speaking of show tunes another hero that comes to mind is Terry Crane. You know it was just the other day we spoke and cried and I told him how I loved him so. I got off the phone and declared him as a father figure. Heck mine died when I was so young Terry really is like a dad to me now. And speaking of fathers I'd sure like to find out who my biological father is someday. I'd really like to know where I came from as I don't really know where I am heading these days, but it certainly looks like I'm headed in the right direction don't you think? I feel as if whatever path I am on is the right one and no matter where the road leads me I will face each fork in the road as an opportunity rather than a problem. Geeze ending up with breast cancer certainly has turned my life around don't you think?
There are so, so many links out there that I am only going to include a few here. As soon as you go to one or two you see tons of links and info.
