The pneumonia is pretty much gone now, and my breathing is at about 95% of what it was before, soon to be 100%.
I'm currently recovering from my last treatment, with the usual side effects: lack of taste, fatigue, weird numbness in my toes and fingers, and still pretty bald. Although- this is the last time I have to go through those. I should be fine in a few days from now.
All in all, I did VERY well with my side effects from ABVD. I was fortunate enough to not have ANY nausea, always had high white c ell blood counts, and minus the pneumonia didn't have any secondary illnesses. Yay.
He's getting tired of me being at the house so much, he wants his personal space.
My New Timeline:
I get 1 week to recover from the last treatment (which I'm in the middle of now), plus 2 weeks to recover in general from my 4 cycles of ABVD before I start radiation therapy.
I meet with my new other Doctor on March 8th 2013, a radiation oncologist, for a consultation.
I have my PET scan (finally) on Tuesday March 12th 2013, and get the results from my regular oncologist Doctor on Thursday March 14th 2013. Which hopefully will show no activity. With the way I've responded to treatment, that's most likely the case as my last swollen external lymph node I had disappeared about 2 months or so ago. If there is a small amount of activity- that's fine as well, as the radiation therapy will take care of it.
I should start radiation therapy sometime around the week of the 18th of March, and it runs for about 4 weeks, 5 days a week every week. The appointments however are a hell of a lot shorter than chemo. Chemo lasted 3-4 hours, while radiation should last 10-20 minutes each, or as my oncology nurse said "it will take you more time to drive there than be treated."
After that, I get another PET scan, however, I have to wait 2 months before I get it, as the PET scan relies on radioactive markers to be able to visualize any activity (by way of drinking the more disgusting "milk shake" I have ever tasted), and the radiation therapy throws it off. So some time in the middle of June will be my last PET scan for treatment AKA my first regular PET scan for the next 5 years. I have to have 1 PET scan every 6 months for the next 2 years, and 1 PET scan a year for 3 years after that. If it all remains clear during that time I'm considered cured. Yay.
Hopefully at some point around the middle of May I can return to work, and gleefully send more people to be miserable at safety training classes. Yeah, I'm that guy.
(I'm also totally buying that really expensive Scotch for when I'm labeled "in remission" not when I'm labeled "cured" as I would rather have the Scotch now than 5 years from now... I'll just buy another bottle in 5 years anyway, can never have too much single malt)
Radiation Therapy- Do I Need it?
Many people have asked me this. Also many people who are newly diagnosed will ask this as well. My answer is: YES.
Chemotherapy kills as much of the cancer cells as possible, not just trying to make you feel lousy. However- you have have to have ALL of the cells destroyed. Radiation is sort of/kind of "mop up" after chemo.
A lot of Hodgkin's patients wonder why they have to have radiation after finishing chemo with a clean PET scan that shows no activity of disease. The reason is that a PET scan is a great diagnostic tool, but has it some short comings. It can show no activity of disease, but that doesn't mean there aren't some small amount of cancer cells present, and it can be notorious for false positives. You don't want to do chemo, and skip radiation if there are a some cancer cells still around, as they could eventually continue to divide and grow, making chemo kind of pointless.
Radiation therapy is the "we need to make sure we got it all" treatment. And really- that's a good thing. You don't want this to pop up again later.
Also please note: Not everyone gets radiation therapy. It all depends on stage, and other factors. Some people if they are in a very early stage, ONLY get radiation. For people who are in a very advanced stage, they have a long cycle of ABVD and even more radiation. Some people are in earlier stages like mine, and have long cycles of ABVD and no radiation as well. If for any reason you're wondering why your oncologist is doing or why they decided to pick whatever for treatment- just ask, you'd be amazed with the answers you'll get if you just simply ask.
My Hair (or lack thereof):
So with my extra week of rest before my last treatment due to pneumonia, my hair actually started to grow back. Mainly my eyebrows (which are looking kind of thin, but are still there). I have a bunch of tiny new eyebrow hairs growing... and they're a medium brownish red color. Which is normal, when your hair grows back it usually is a slightly different color and texture than before- which will last anywhere from 6 months to a year before going back to the way it was. The initial texture I'm told is kind of like a weird baby hair softness.
There really isn't anything you can do to speed up the growth, and "everyone is different." You're basically genetically pre-disposed with how fast your hair will grow back. With some people it grows DURING treatment, some takes 2-4 weeks to start growing, and others take about 2+ months.
Another weird thing is I have about 30 or so hairs on my head that never fell out and kept growing all through treatment, albeit growing about 1/4 the rate my hair usually grows at. They all have a strange thickness to them. They have a "wavy" thickness, it will be thick then thin repeated a few times, the thin parts are from when I had ABVD treatments, and the thick parts are from when I was recovering the week after. It's like a weird tree-ring of memory.
I've also got a weird white peach fuzz of hair slowly growing on my head. We'll see if they match my eyebrow color in a few weeks.
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