Tuesday, March 15, 2011
The doctors gave me about 6 months to 22 months. I'm still here and will celebrate my 2 year anniversary of my diagnosis in July along with my 64th birthday. I'm tired most days and will not take any of the chemo recommended, although I did have one slipped to me in the guise of a hormone to control spread. Bullshit. Remember this ploy and don't fall for it.
I experienced all of these horrible symptoms including hair loss, nausea, diarrhea, painful joints, muscles and bones, headaches, sleep problems, weight gain with concurrent loss of appetite, etc. I decided to look up the complete down low on it instead of the Cliff notes version. Very informative.
I quit taking them about 2 weeks ago and slowly feel the miasma lifting.
Maybe more later.
Posted by Unknown at 3:26 AM
Wednesday, December 02, 2009
So much for a diary as this unfolds. Fast forward to now. I've read everything I can possibly find on IBC, have had a visit with the oncologist and a staging MRI. The MRI put me at III B because I have tumors that have invaded my chest wall through the pectoral muscle and because lymph glands are fully engaged and happily pumping the stuff out.
The junior oncologist - don't know if he started shaving yet or not - was a bit of a cavalier twerp, inspired no confidence and confirmed my conviction to eschew the horrid standard slash and burn treatment. He left me no doubt that he was lucky he knew where to hold himself to pee as he made one factual gaff after another. I KNEW more on IBC than he did.
He said that he wanted to do a biopsy to confirm the three tests and visual evidence that all say I have IBC. I told him no. When I said that the biopsy would seed the track of the needle punch, he stated that they were going to remove 3/4 of my breast anyway. I asked, "Which quarter are you planning on leaving? The nipple? A mole"?
This was one of his gaffs - there IS no partial mastectomy for IBC because the skin itself is the cancer along with the tissues under and around it. It all has to go. Which means part of my ass would end up on my chest if I let them to cover the gaping hole left there.
So. I will post the MRI contrast results another post. More of the same good news. I also now know that I have between 6 and 22 months and have had a feeling confirmed that next fall will more than likely be my departure.
I've spent time with my son. We're cool. My friends are helping me much out my costume biz, clear paths through the house, I'm getting my end of life papers finished up and can sit back and enjoy very soon. No heavy thoughts tonight. I've had my fill of them earlier.
Tuesday, October 06, 2009
Before I get back to my story, I'd like to share with you a convo (Etsy shorthand for personal conversation) from one of my friends there. She has survived the allopathic routine less one boob and was telling me some of the things that set her off about the reaction to breast cancer. This was my answer.
Thursday, October 01, 2009
I have the Big C the kind of which is destined to rapidly approach the Big D very soon. The Big C is Inflammatory Breast Cancer (IBC). A particularly nasty and ferocious type of cancer and one not well known. IBC represents 1-3% (some sources say as much as 6%) of all breast cancers making it a rare and dangerous ruffian. It does not usually present as a lump, although that is what led me to pursue a doctor visit.
I had a spot on my right breast where my cats had jumped on me - twice. It was bruised and sore for a few weeks then seemed to heal. That was in late March.
In April, I had a lump form in about the same place. It was very hard and very easy to palpitate. Thinking that I had a cyst form from some deep bruising, I kept checking it and wasn't all that worried because I could move it and pinch the skin on top of it. Cancer tumors are not supposed to be able to move and you're not supposed to be able to pull the skin around them.
July came and the lump became rock hard, large enough to see pushing up against the skin of my breast. No pain, but the breast around it was tender. I knew I should get it looked at, but was crazy busy with life and my insane insomnia kept me up all hours of the night so that I could not function during the day. By August, friends were badgering me to go get it checked and I promised I would.
The last week of August, an itchy red, raised area appeared on the underside of my breast close to my arm pit. With my mirror, I could see that my pores looked like someone had reamed them out with an ice pick and the adjoining skin was rough and rippled. This was August 25th.
I couldn't get an appointment for two weeks. The redness, swelling and roughness spread to my nipple then up to cover the area where the lump was. My nipple started feeling like leather, began turning inwards, and the itching drove me nuts over the weekend. I decided not to wait for the appointment and walked into my clinic on September 1st.
My GP prescribed Keflex anitbiotic just in case it was a bug bite. I knew better and so did he. He's been to school and specialized in oncology before he came over to general practice. I'd spent hours on the internet Googling skin rashes, spider/insect bites, contact dermatitis and breast skin disorders. I hit the images toggle and there was my breast, second row down, second picture from the left. The picture title was "Inflammatory Breast Cancer".
By the time I got to see the doctor, I had a pretty good idea that the antibiotic wasn't going to do dick. And it didn't disappoint. My follow up was September 10th. I said, "This is the bad one, isn't it"?
"It may be," he said noncommitally. I saw the look exchanged between him and the nurse. He told me I'd had to have a diagnostic mammogram and that he was referring me to a breast specialist. I resist.
Mammograms are a tiger with a diamond studded collar to me. It may be touted as cutting edge diagnostic, but it's a wild card. Why bombard an area prone to cancer already with a known carcinogen? I don't see any radiologists or other medical professionals moving to Chernobyl so I gave mammos up for Lent seeing as how the ones I did have I suspected of destroying some perfectly movie star stand up bosom musculature that were my pride and joy. Also. I was immediately scheduled for a sonogram and then an MRI after each and every mammo. Why not cut to the chase and save some time and money?
"An oncologist, right?" I asked just to clarify. "Yes". I give in to the diagnostic mammo since I cannot see an oncologist and get a definitive diagnosis until I do.
I'm sitting in the hall next to his office and I hear the conversation he has on the phone talking to the scheduling clerk. "The referral is rule out IBC with palpable mass". I know what that stands for.
To be continued.
Wednesday, September 16, 2009
Wednesday, September 02, 2009
So. Friend Apatx calls and says he's just finished his latest painting and would I look at it. Answering with the Southern affirmative referencing the nether parts of cats, I tell him to send her. She knocks my socks off as does all his women.
This man truly loves women. He gets them the way Don Juan De Marco got them. And allthough there's nothing carnal in that statement, he does make love to them in his imagery ad brush. Here's what he sends me along with her:
I hope you are well and happy when reading this. Here attached I am sending you two pics of my most recent painting, "The Spirit Of The Water And The Spirit Of The Earth"
This painting is all about womanhood. All the elements are there (Water for deepness, flowers for beauty, trees for stability, fruits for achievements, seeds for postential, roots for strength, the moon for its mystery, and the basice design behind it is the whole femail reproductive system if you can see it! I will give you a clue - the orange circles by her hands are the ovaries and the rivers that flow to them are the fallopian tubes). She holds an Egyptian Wass - Scepter that is a phallic symbol as well, meaning power over both sexes. There is a Bleeding Heart Flower and a serpent ready and a serpent ready to devour it and this flower is the symbol of young age, maturity and decay. She is also stigmata but not as a religious symbol, but as the symbol of selfless sacrifice that some women can show for others. There is more.......Do you like her face?
Do I like her face??
Posted by Unknown at 6:08 AM
Wednesday, August 26, 2009
I've been reminded and hunted down by several stars in my life that I haven't paid much attention here lately. Excuses are abundant, but it boils down to just a few: I'm busy out of my mind since my Deepwater Trading Company shop on Etsy.com has taken off. And I just emerged from my Persephone part of the year.
Yes. I know that herselfs journey took place during the winter months, but I'm a cancerian and Saturn takes a swing at me the 3 months before my birthday in July. Hard swings. All my births, deaths and anniversaries come during this time and although each year gets a little easier and brighter, I'm still reminded yearly that I'm an orphan without any family left.
August brings one last punch at the end, but by that time, I'm chirping and happy and dancing in the kitchen with the cats. What I learned from this time in my solar year - tell the people in your life that they are important to you, that you love them if you truly do, and to take a bladed weed eater to the energy vampires and users in your life that play games set up for you to never win. You'll break your back trying to please them and your best will never be good enough.
But also, along with the goings, like my BFFs Martha and Jim Marshall packing studio, house, my god dogs and cats and moving way the hell to BFE Alabama where I can't flounce over, have Alexander (Jim) make me THE world's best martini or perfect Manhattan while dishing out enough razz that I give up the sulk for cursing at him until he laughs at me, or sit there talking to Martha and watching at the creative marvel she is and the incredible mind she has ping off of mine, and feed bites to three of the most amiable fur people in the world under the table. Within an hour or two, I'd be right as rain - Are comings: Several new and dynamic friends who think I'm in-fooking-credible (new word 'fook' gratis my Lis Beck/wonderful French Canadian adopted girl child), and worthy of taking a like to.
I am blessed. My tattered old house and soul are being slowly repaired, shined up, looking like a Victorian grandee. And the house ain't bad either. I have a live in man - more on that later and the most joy in my heart for many an age.
And Etsy. I've been discovered. My mix of eclectic words, unusual and hard to find vintage, antique and contemporary laces and trims are hot cake items now. I ship to Australia, Spain, France, the United Kingdom from Wales to Scotland, Borneo, Singapore, Japan, Israel, Canada, the US and anywhere else there's a post office. And they come back so I can spoil them more. I love seeing the incredible arts on Etsy. I have the most creative and talented people on the planet. They like me and they like what I do. That's a big check, check, check on the things we all need list.
Maybe I can take a few minutes to update you, post some more patterns, finish the story of Talis and Littlefoot and just connect.
Posted by Unknown at 12:29 AM