Below is the post I put up on a local social networking site. I wanted to tell family and friends what they need to know, without having to repeat myself a million times. I know I’m repeating because people care, but the repetition can be a little emotionally draining as each person responds differently.
Still, every time I re-read this I think I could have done a better job. There’s not a good website for getting ideas on what to say or how to say it. I know it would be inappropriate, even for me, to be flippant or humourously morbid. But at the same time, I can’t bear to be miserable and fatalistic. There’s no right or wrong answer, but I’m not all that happy with my product.
Can you imagine going to a former teacher and asking her to critique your essay? Doing rough drafts to analyse verbs and adjectives? Pulling out a battered copy of Roget’s Thesaurus to make your writing less mundane?
On the plus side, I’ve done a pretty good job of maintaining a good frame of mind. Sometimes it’s hard to put on the brave face, but I think letting go (however good for the soul) would be significantly demoralising to those around me, who look to my every action or expression for clues on how to behave. Yeah, I know it’s all about me right now, but I think I draw strength from them not being gloomy, too.
Ah, well, it’s posted, so there’s no going back. Let’s hope my next overly emotional social networking post is the bearer of better tidings.
No one likes to hear bad news, but being the one to give it is even worse. Unfortunately, that’s what I have to do.
My last PET scan showed my melanoma has spread to my T1 and T7 vertebrae. This was confirmed by two and a half hours in the MRI tube and a CT-guided biopsy. I also had a second opinion at Dana Farber in Boston.
Kate and I were kind of excited about finishing up our first year (24 August): I was not suffering many side effects (general fatigue and a loss of appetite) and we could almost see the end of the thrice weekly self-injections – well, on the plus side, I no longer need to stab myself! We’ve had many ups and downs this past year, with with medicine and PET scans and MRIs and biopsies and countless appointments and we were feeling pretty positive.
Being told I’ve moved to Stage IV for a malignant, uncurable disease was not on my bucket list. Uncurable, but not untreatable. Heck, since I had micrometastisis in my lymph node, I’ve always known I had a 70-80% chance of recurrence in 3-5 years. But that doesn’t really provide any comfort.
On the surface, this is very bad news, but it’s still not as bad as it could have been. I have two very small spots (probably because the interferon was working), they have newly approved treatments available and there are even more treatments being evaluated all the time. When your doctor says “You’re not the average melanoma patient” because “you don’t have a lot of melanoma” that is a Good Thing.
The really bad news is that historically the prognosis is about a year. But the “good” news is that’s based on NOT having the newly approved drugs. The doctor said people who do the drug seem to do better than those not taking it. I didn’t have the presence of mind to ask what exactly that means, but I assume it’s the intangibles, like positive attitude and pain management (and karma). Like any other medicine, how well it works can only be seen after you’re through the treatment. We know very few people receive what they call a “durable” benefit, which is essentially being “cured.” We know there’s a larger percentage of people who have either no growth or a reduction of the tumor, which is really good. And we know many people have no benefit, in which case we move to other treatments.
The boys know I have new spots of cancer and I’m going to get new medication. They know I’ve got some pain which limits how long or how often I can do things with them. They DO NOT know anything about the long-term prognosis. We’ve decided they don’t need that burden until we have a more defined timeline.
Right now I don’t know how I feel. I should be feeling denial or anguish or anger or depression or something. I can’t even say I’m hopeful or re-energised. I just AM. I don’t feel empty or devastated. I kind of feel bad that I’m not feeling anything. I am hopeful that it all works and that I am the 1% who gets a durable result. I am massively appreciative of my family and friends who have shown me so much compassion and support. Heck, if anything I feel guilty that I’ve got to place such an emotional burden on my family and friends.
Please don’t think I’m giving up or accepting my fate. I intend to do everything I can to ensure I’m around to annoy all of you for a really long time. I have really good doctors and nurses and hospitals (and insurance). And I have high expectations.
Again, I hate being the bearer of bad news. Quite frankly, I wish none of you needed to ever hear this about anyone you know. Take care and make sure you schedule an annual checkup with your dermatologist.