I didn’t say what I intended after my last visit with my oncologist. My MM markers are doing fine. My M-spike actually decreased. I just keep healing myself it seems
I did mention I keep asking Dr. M about whether he’s had a patient with my same experience (spinal cord damage from radiation) until he gives me the answer I want. That is, I am wanting someone with my same experience. That would mean I want him to say “yes” which would mean someone else would have spinal cord damage. Maybe I don’t want Dr. M to ever say the answer I want to hear because that would be wishing ill on someone else. I certainly do not want anyone else experiencing this.
The good news, then, for fellow MMr’s, evidently this is very rare…this spinal cord damage from radiation (on the lesion in my spinal cord.) So do not fear this damage, though do your research before any treatment.
I’m still very sleepy, though I don’t feel in the daze like I used to. It is very tiring with my hips and legs not cooperating. It takes all I have to move around. Maybe that’s enough to tire anyone out. I still look forward to improvements, though. I think it’s going to take some time and therapy. It’s better already. So, this is not glum news.
Son, his wife, and 8 month old baby boy are coming up for Thanksgiving. I’m excited. My son and his wife here are also excited to see them. I love seeing the boys together, laughing. This time it will be extra fun because one boy is 8 months old and the other one is 21 months old. They will be so funny together.
My boys were 20 months apart. Once the youngest can walk and start talking, they will be playmates.
Needless to say,I’m very excited to see the kids. I can’t wait to kiss my grandsons big baby cheeks. He’s a sweet heart.
It’s funny how things turn out. When I was first diagnosed with MM 10/05, one son was single, and the other son wasn’t talking about having a family yet. I recall the first nights after I was told I had a terminal cancer, I thought how I would never see my grandchild. And if I did see a grandchild, I assumed I would not see him or her to 5 years old!! At that time we’d read about life spans being 3 to 5 years, but for my age and health, I would probably be 5 to 8 years going.
I never gave up or planned on dying, but it made it more challenging to fight when I began feeling this uncooperation in my legs. I recall walking for exercise up to the point I could no longer walk without a cane.
I plan on revigorating my attitude. I look forward to see what my Rehab doctor prescribes. The medicine in my pump needs to be increased, as my legs still get stiff and I’ve had leg spasms when trying to sleep. (I’m going to have to get the term for this liquid medicine. It’s Baclofen, but a different term is used for what I’m getting now.) I expect Dr. P (Rehab dr.) will prescribe Therapy. I will ask what sort of realistic expectations I should have, comparing how my legs function now and what I can hope for.
One time my sister commented how I should be enjoying this spread of having my Myeloma in check and it not fair having the partial paralysis problems with my legs. Well, she’s right in a sense, but then, I can’t help but think there’s a greater plan for me, even with these darned old legs, hips, and body functions that no longer work normally.
I think it’s up to me now. I know I’ve said this before, but it is true. I have so much to be thankful for. So do you, most likely.
I just read today where a boy in Germany was thought to be in a vegetated state for the past 23 years after a near-fatal car accident. At 46 years old, doctors discovered his brain is functioning normally. It was said he was ‘screaming but no noise would come out.’ Yuck. I’m happy they now know he is aware. I think he will write a book on his experience.
I’d rather be me than he, right now.