The dates aren't exact, but it was the Saturday of Memorial Day weekend two years ago that I knew I had cancer. Not when I was diagnosed, but when I knew. On Memorial Day I posted this in another online space:
I've been debating about writing this for a while a couple of days now,
because it will be days or weeks before I know anything, and it feels
stupid to fly into a panic now, but that's where I am.
Early last week I found a lump. A ghost of a thing in my left breast that is different than anything that's been there before. I worried a bit and made Bob feel around for it. He said he didn't feel anything substantial but that I should make an appointment with the doc to check it out. I have my mammogram scheduled for the week after next anyway.
Saturday morning in the shower I wasn't even feeling around for it, it was just there. Right at the surface, in my breast, next to my armpit. Feels like a golf ball, hard and a little bumpy, about half an inch below the surface of my skin. Of course my doctor's office is closed for the long weekend. I called the paging service and talked to a doc who said there's nothing anybody can do before Tuesday because of the holiday, and this is not the sort of thing that can be rushed along by a trip to the E.R. So I'm going in for an urgent care appointment in the morning, and I expect she'll order a biopsy immediately.
I haven't told my parents. If it's nothing I don't want them to worry. If it's something I want to have some answers before I talk to them.
Bob's being great. I'm not doing so well. I can handle stress. I can handle pain. I can handle things going catastrophically wrong. I can't handle not knowing, and this is the worst not-knowing I've ever experienced.
Early last week I found a lump. A ghost of a thing in my left breast that is different than anything that's been there before. I worried a bit and made Bob feel around for it. He said he didn't feel anything substantial but that I should make an appointment with the doc to check it out. I have my mammogram scheduled for the week after next anyway.
Saturday morning in the shower I wasn't even feeling around for it, it was just there. Right at the surface, in my breast, next to my armpit. Feels like a golf ball, hard and a little bumpy, about half an inch below the surface of my skin. Of course my doctor's office is closed for the long weekend. I called the paging service and talked to a doc who said there's nothing anybody can do before Tuesday because of the holiday, and this is not the sort of thing that can be rushed along by a trip to the E.R. So I'm going in for an urgent care appointment in the morning, and I expect she'll order a biopsy immediately.
I haven't told my parents. If it's nothing I don't want them to worry. If it's something I want to have some answers before I talk to them.
Bob's being great. I'm not doing so well. I can handle stress. I can handle pain. I can handle things going catastrophically wrong. I can't handle not knowing, and this is the worst not-knowing I've ever experienced.
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I stand by that original assessment. Through everything, waiting was the worst part. It still is. Every 90 days I get bloodwork and go see the oncologist to check on my tumor markers and she taps around my body looking for new bone pain, since that is where it's most likely to recur if it comes back.
Since then I've had eight or nine biopsies on my breast, surgery to install a port on my sternum, surgery to remove my breasts and ovaries and fallopian tubes and lymph nodes, surgery to reconstruct my breasts, surgery to revise the original reconstruction when it didn't heal right, and I have one more to tweak the final result, some time next year. 32 weeks of chemo.
I've had a complete failure of my lungs processing oxygen which resulted in a week long stay in the pulmonary ICU at Stanford, which included a lung biopsy and pneumothorax (and massive hallucinations from fentanyl), and another test where they kept me awake and shoved a camera down my throat so we could see inside my lungs. I was coughing so much it sounded like bronchitis but they think it was only to get oxygen. Watching my lungs squeeze on camera was one of the coolest things I've ever seen. But I never want to do it again and generally don't recommend it as an entertainment. The coughing was so bad I became incontinent and pissed myself on the table. Not fun. I ended up with oxygen tanks at home for almost a year. And I also had a different bad reaction to taxol that landed me in the E.R. after I scratched myself bloody and had hives all over my body.
I've had two kidney infections, including a week hospitalization for one of them. Seven months total with a wound vacuum attached to my chest or stomach. Watched (and smelled) the flesh on my chest die and fall off. Prescriptions for every kind of drug under the sun. It still looks like a pharmacy in my office. A bloodclot in my arm. I've lost count of the number of MRIs at this point. I've also had a PET scan and a CAT scan, at least once each.
I also got married (twice!), adopted a wonderful dog, studied for a major professional certification (PMP) and passed the test on the first try, and was able to work for 11 out of the last 24 months.
Now I've got one open wound that's about 2x4 cm, and I'm having some bad nerve pain as all the internal damage starts to heal. I'm taking Neurontin for that instead of opiates and it seems to be helping. When it comes on it feels like a crazy itch that evolves into throbbing pain over a couple of hours. It's not constant, it's happened maybe 3 or 4 times in the last week. Starting today I'm on Neurontin 24/7 for a month and it should prevent most of that from happening.
I've been back at work for a couple of months now and feel like most of it is back to normal. Whatever that is. It's been a completely crazy couple of years. I feel very lucky to be here on this side of it, basically intact mentally and emotionally, if not physically. I am lucky to be here at all.
