Today marks one year since I was diagnosed. One year since that moment when I was escorted mid-sandwich from the hospital cafeteria to the radiology dark room and shown pictures of the grapefruit sized tumor in my chest. The details from those moments are burned in my brain.
I’ve also recently passed the 6 month mark in my remission. The scar tissue from the tumor continues to shrink. From my most recent x-ray, which was taken a few weeks ago, it looks to be about the size of a samosa.
I’d like to say more in this post, but I’ve been typing and deleting for about 15 minutes now. I don’t know how to condense and/or express the past 6 months of my life. At least as far as the experience of surviving cancer is concerned.
I thought I had posted these photos on the blog already, but I guess not. The left side of the screen is from the scan on December 14 2010. The right side is from May 5th 2010.
I went to the doctor two days ago for my 4 month checkup. I’m still in remission. I don’t have any symptoms of recurrence. The doctor didn’t even do a blood-draw. It was nice to walk out of there without being poked for once.
My myelopathy has peaked and might even be starting to get better. It’s hard to say. I usually walk about mile (round trip) to get lunch every day and I’m buzzing for about 30 minutes after I get back. I don’t know why it’s always lunch time that’s the worse. My legs no longer feel weak though.
Hey everyone (cue the chirping crickets)! I have news! I have developed Transient Radiation Myelopathy. Here’s the scoop:
A few weeks ago my legs started feeling weird. By weird I mean that it felt similar to when you hit your funny bone, except it was in my legs (thighs / hamstrings / radiating into my calves). It was not pins and needles. It was not numbness. It was also not in my feet. It’s not even what I would call painful. Just weird, and very unpleasant. All of these “not’s” made it so the symptoms didn’t match up with peripheral neuropathy (my doc told me I’m at risk for that from the chemo).
So of course I immediately turn to my friend/enemy Google and start searching for diagnoses. I also call up the chemo doc. They’re not sure what to think. They told me to keep an eye on it and check back in. So that’s what I did. The symptoms got a bit worse and I noticed a few things:
- I get the funny bone feeling when I bend my head down.
- I get the funny bone feeling when I exert myself (even a brisk walk is enough to do it).
So I google these little symptom tidbits and came up with “Lhermitte’s sign.” I continue to google and came up with “Radiation Myelopathy.” Turns out there are two kinds of Radiation Myelopathy. One that goes away (transient) and one that is incurable and can result in paralasys. So… like usual Google provides me with the typical answer of “either you are fine, or you are very seriously ill.” I know I should have learned my lesson by now with Google and symptoms.. but ya know.. I haven’t.
I then give my radiation doc a call, describe my symptoms, and they know exactly what’s going on. They tell me how to properly pronounce “Lhermitte’s” and tell me that I have the transient variety. It will go away. And I was able to semi-accurately diagnose myself using google.
This is for my own records. My body is itching all over this evening. Not extremely itchy, but a middle-of-the-road itchy. And not exactly like it was when I had the Hodgkin itch.. that was localized to my forearms and lower legs.
I hope it’s nothing.
If it is something, I hope it’s hypothyroidism. The skin on my face has been dry lately. I have been gaining weight. Those both point to my thyroid throwing in the towel.
No night sweats. No new bumps as far as I can tell.
Hello dear reader. I have my first post-treatment CT scan tomorrow morning. I feel quite confident that the results will be good ones. I have none of the symptoms of recurrent disease. I still find myself worrying about it regularly though. I’m still learning how to deal with the realities that are now mine to deal with.
I started a new job about a month ago and I’m loving it. I had my chest port removed the day before one of my interviews. It went fine. They had no idea. Here’s a photo of that:
I think I’ll frame it eventually. I’m glad they let me keep it.
I plan to get my first installment of my tattoo on Wednesday.
As of October 25th I’m officially in remission. May 5th — October 25th. Almost 6 months. What a long 6 months. It still feels astonishing to me that I was ever diagnosed with cancer..
My oncologist didn’t bother with another PET/CT scan since my mid-point scan showed no activity. If it was practically dead halfway, what are the odds it could have increased in virility after 2 more months of chemo, plus 17 days of radiation? Makes sense to me. I hope it’s the case.
So instead of a PET/CT I got a quick x-ray to document the size and appearance of the scar tissue. The radiation tech allowed me to take a peek at the resulting image (wish I would have taken a quick cell phone pic now). It looks to be about the size of a very large potato. I don’t think I’ll ever breathe the same again and I can feel its constant presence in my chest, but I can’t really complain. My life has been extended.
I have a CT scan scheduled in December to double check that there is no fast-recurring disease. It’s a small chance.. but it’s there. And if it happens it’s best to catch it quick.
So now it’s watch and wait. I feel myself for lumps everyday. I pay attention to how I breathe, how I feel. I’m on alert for itchy skin and night sweats.
Hopefully though, this is the last of it.