Who I Am

I'm a mother of two gorgeous girls. I have friends all over the world whom I love like family, and family who are my best friends. I love the written word, ribald jokes, swearing like a trucker and embracing my not-so-inner geek. I'm loud, I'm brash and I've been known to close a bar or three in my time. I hate asking for help, I'm a control junkie and my Internet nickname is stressmagnet. That says it all, really. And this is my story. July 24th, 2008, At age 46, I was diagnosed with inflammatory breast cancer - stage III. Inflammatory breast cancer is a relatively rare form of breast cancer which is highly aggressive and does not present with a lump. The cancer was throughout the whole breast - diffusely involved. My oncologist and my surgeon at the time advised chemotherapy to shrink the tumour so that surgery was possible. I did chemo and the tumour shrunk drastically. I started on radiotherapy and I had a portacath put in as my veins were burnt black from the chemo. I got septicaemia from the portacath a week after it was put in and spent the next 2 months in the Intensive Care Unit, in a coma, hooked up to a heart-lung machine, as well as a dialysis machine. My family in Calgary, Canada flew out to say goodbye as my chances of surviving were less than 50%. But I'm too cranky to die and I woke up to discover I was paralysed in my legs, as the sepsis had damaged the nerves in my lower back. I had also a perforated ulcer. My chemo and radiation was stopped as my body was so weak from fighting the infections. In November 2008, while in hospital, they discovered the cancer (which had been responding so well to treatment) had metastasised to both lungs and to my T3 vertebra. So bedridden, on antibiotics, I begged for chemotherapy to buy me more time. After a month on antibiotics, the staff oncologist, the wonderful Rod Aroney, agreed on the condition that it was given to me whilst in the hospital. 2009 Begins... I spent another month, having chemo and relearning to walk, albeit with a limp. (I still use a cane when I'm tired). I was released from hospital in time for Christmas 2008. I continued chemotherapy (but no radiation as I couldn't lie flat without intense pain) until end of January 2009. Everything looked stable and the thoughts were that the mets in my lungs and neck might just scars from staph infections. I had a double mastectomy in Sept 2009 at my own insistence. In the words of my old oncologist (not the wonderful Rod!) "There's not much point, given the statistics". Well, huh. During the procedure, they discovered infiltrating ductal carcinoma in my left breast Stage II - however it was triple negative. Triple Negative is an even rarer form of breast cancer that is highly aggressive and difficult to treat. My right breast was fine. I spent a month in the hospital with infections from the mastectomy and began chemo again in Dec 2009 - new drugs, since my cancer had obviously developed resistance to my current drugs. At this point, I'd been 'doing' chemo for 18 months. Two years later... I kept on doing chemotherapy for another 18 months, until November 2011. Another.18.months. That adds up to 3 years, almost continuously. In November, I was given the all-clear. I could get on with my life. My eyebrows grew back in, and my eyelashes, and my hair. I started doing things with my girls, and reassembled my life, piece by piece. I started a full time job in June 2011 -a great job, with travel and educating and technology - and 10 minutes from home. My life was all mine again, and perhaps my suffering was in the past. I'd had my fair share, surely? Better yet, after 8 months drug-free, in July 2011 - I had an all clear - no evidence of disease. I had beaten the dismal odds. Oct 2011. It's back. Again... My oncologist found a lump above my collarbone. It turned out to be a recurrence of the triple negative in my supraclavicular node. This node is part of the lymph system which clears the spleen and the liver. One of the worst places for it to appear. The affected nodes were removed, and I received radiation to the neck and left chest area. A serious dosage, as the cancer was so aggressive. My burns were the worst the radiation oncologist had seen in 10 years. When I showered, my skin fell off in black flakes of charcoal. I kept working, some days - work was all I had to get out of bed. It took 6 weeks for my body to be in well enough shape to start chemo. I started my latest round of chemo just before my birthday this year, in March 2012. I celebrated my birthday with friends and a big dose of anti-nausea drugs. 2012. Just keep going... In May 2012, worried about lumps in my neck, I had a CT and Bone Scan done. My neck turned out to be clear, but coincidentally, the scans found a large lesion in the middle of my spine, which I had thought was a pulled muscle. I've just finished 21 rads to my spine, and despite the pain, I'm continuing on with Carboplatin and Taxol for the next two months, at which point, I will have another scan to see how the spinal met is doing, and whether there are any more mets. There's likely to be more, as metastasis to the spine usually means the cancer is in the spinal fluid and brain. I am now 50 and have spent most of the past 4.5 years on chemo. I'm likely to spend whatever remaining time I have left, doing chemo. I'm prepared to fight as long as there's hope. But gosh, the statistics are depressing. What Is.. I'm a "5%"er. The loudly trumpeted 95% cure rate for breast cancer doesn't apply to me. All the pink ribbons in the world don't seem to make a difference when YOU have the cancer that's not what everyone else has. There are more funds being diverted to finding treatment options for Triple Negative Breast Cancer, but there's not enough funds, and there's not enough time. This is a cancer that once it metastasises, has a survival rate of 12% over 18 months. In me, it's metastasised. More than once. My daughters will be 13 and 10 if I don't beat these odds. Given the high mutation rate of my cancer, the trick is to expand my drug options, and to see if anything can kill it fast. It might be a bowel cancer drug, or high doses of Vitamin C. It might be the one and only breast cancer drug I have left. But until we know, we are basically just guessing. And each time we guess and guess wrong, my cancer gets stronger. I wish there was a way to be sure. I'm emotionally close to the bottom. I seem to have only two choices left. If drugs won't help, I can gracefully bow out, regain some strength and actually live the life I've got left with my girls. If there is a drug that is effective against my cancer, I can move heaven and earth to get that drug and kill this thing once and for all. And then I can rebuild my life, see my girls grow up, and spoil my grandbabies. Thank you if you've read this far. Just knowing someone has read this, makes me feel I may have made a difference. Please check your breasts, buy a ribbon and have regular mammograms, you ARE helping. If not me, then MY daughters and YOUR daughters, because breast cancer STILL KILLS.