Lady8i8
Wow.. where do I begin? It has been so long now that it feels like I've always been on this medical journey, though sometimes I can *almost* remember what things were like before all of this drama that I have come to refer to as "My Life As A Guinea Pig". Please bare with me as I try to recount everything as best as I can..
September 24. 1994 - After over a year of tests I was admitted for surgery on an emergency basis. We'd go for a scan, wait 3 weeks for results, go for another test, wait 3 weeks.. and it went on and on. They'd finally determined there was a cyst, and I was waiting for a surgery date when I lost my ability to eat or process anything. We had orange juice for dinner and the next morning I was ill and it hadn't been processed -- big warning sign. I was taken in for surgery. I spent the better part of a day waiting in a hallway. The next thing I knew I was in recovery. The doctor told me the news -- I had ovarian cancer. They'd removed 5 1/2 pounds of cancer and my right ovary. They were setting me up for chemotherapy and follow-up treatments at the BC Cancer Agency. It was just a week before my 25th birthday.
It was a rare type of cancer I understand. A germ cell tumor of the ovary. I did almost a year of chemo treatments. It was a difficult surgery. They lost 3 litres of blood on the table and I just about died. A blood transfusion was required. I still have vivid memories of losing my long blond hair in just a few days. It was awful -- I joke now that blond jokes are okay by me since I've been bald -- in comparison, BLOND is a breeze.
In January of 1994 I went in for my checkup so sure that I was in remission and that I was all done. I felt good, and I was making preparations for courses and my "new" life. I recall bouncing in my chair listening to my walkman waiting for my appointment. Walking on sunshine doesn't begin to cover it. Turns out I couldn't have been more wrong.. they found something on my remaining ovary. We'd had such a hard time going through the first time -- they wanted to remove everything just in case, and I fought so hard to keep it all. They'd pumped me full of "you wouldn't be so lucky a second time" etc etc.. in an effort to get me to submit. I hadn't had any children yet and wanted NO part of this plan. I finally had to take my father and sister in with me for moral support. The look on the doctor's face when my father (6'3" - 245lbs or so) spoke up and told her that I'd said that I didn't want it, and I wasn't having it. PERIOD. He'd been so quiet up to the point but she was badgering me.
In March of 1996 I was back in surgery. They took out most of my left ovary and 1 1/2 pounds of non-cancerous tissue. Again they wanted to remove everything "just in case" but I argued as I had before. I was still only 25, with no kids. I didn't want to remove all of my chances before I even had them.
A few months after my 2nd surgery I began having swelling in my legs. My GP at that time diagnosed me with edema and gave me furosemide (lasix). I moved to Ontario in January of 1997, becoming a C/L wife, and stepmom to 3 all in one swoop. It wasn't exactly the way I'd planned things out, but then again with my life it rarely ever is. ;) My new GP just carried on all of my prior prescriptions without question, as did the GP we switched to because we just weren't happy with this woman's attention to her patients. I was 6 years in when we stopped getting any results from them, and I was sent to a doctor of internal medicine. He took one look at me and told me it wasn't edema, it was lymphedema -- lasix apparently was the worst thing I could take for it.
We've taken several detours along the way, or rather there have been many stops and starts in treatments. So many attempts at treatment for the lymphedema that didn't work out for one reason or another. We even had home care in for a while, but they weren't able to staff twice a day and they were discouraged when my results weren't more progressive or more easily maintained.
During that time I learned that I had Polycystic Ovary Syndrome, something that I didn't know when I had my cancer, but I did find reference to PCOS in my operatic report when I got it years later. I was referred to the thrombosis unit for my legs, and subsequently sent for a sleep test. I also have sleep apnea. Asthma was my housewarming gift the very first winter in Ontario. It just gets to the point of being so frustrating being broken all the time. My hunny has been wonderful for the most part, but sometimes my limitations get to him too. All of this exacerbated by him being rear-ended in a car accident 2 years ago and being somewhat limited himself in some respects. My stepkids well they're teenagers, so that's a day to day journey.. and you never know what you're gonna get there..
So many contrasting lessons, feelings and information come to mind when I remember this journey. Over all, I think more positive than negative have come from my medical journey though I can't help but wish sometimes that I'd had an easier time of it. At some point you just have to be able to say ENOUGH IS ENOUGH already. Give me a break.. They say that God doesn't give you more than you can handle, but I do have to wonder sometimes if perhaps his trust isn't a little misplaced. He trusts me WAY too much, I'm afraid.
So here I am on the edge of 2008, just two weeks before Gastric Bypass looking back over the last 13 years. Where did it all go? I've been told to make this choice, then told If I don't do it I'll be dead in 5 years time. So it's not like there's a real choice there. I am moving forward into this next phase of the Guinea Pig with enthusiasm and a little trepedation. God only knows where we'll get from here, but I am so thankful for my friends here at OH and those I've met on Dailystrength.org who have been so wonderful to share their experiences with me. You can't beat that feeling of being told "I know how you feel" by someone who has actually been there.
For those of you who have taken this ride with me, and for those I've just met, and have yet to meet. I just want you to know that whatever happens. I'm glad I didn't have to take this ride alone. Thanks for being there. :) Best wishes to you all.
