Cindy’s Multiple Myeloma Blog

Hello.  I haven’t blogged in a while, I know.  So, what’s changed?

I sold my 5 acres and that is behind me.  Then, my home sold and we close 3/4/09.  I have mixed emotions. I wish things had been different in that my home had been in better repair and that I felt that I could handle it out in the country by myself.  I would have had the company of all my pets.  But the reality of it all is that they deserved better than what I was able to give them.  Wish I, should have, could have, and all that stuff won’t do me any good now.  It could have been so different, maybe, had I done things differently.  I didn’t.  So, this is the best I can do and it’s not that bad.  At least my home has sold.  I didn’t get as much as I would like to have got or what it’s really worth, but then in this economy and my current condition….it’s great. 

Still, it’s a big chapter of my life closing.  A BIG chapter.  This was my grandparent’s retirement home, though what I owned was a smaller part of the acreage.  There’s a lot of memories gone  now.  Also, it just dawned on me.  Now, when my or my son’s pets die, we don’t have a family plot to bury them anymore.  We’ll either have to let the vet take their little body or maybe a relative will give us a “spot” to bury our little loved one.  Silly as it may sound, that is important to those of us who love our little pets.  I never worried about it before.  I buried 3 dogs a little bird in my yard. 

Big changes in doctors.  I finally made it back to my original oncologist, Dr. M.  January 13th I’d gotten so sick, vomiting, having leg spasms and just losing it.  My blood pressure had been super high for 48 hours so an ambulance was called and I went that way.  I was too sick and out of it to ride in a car. 

I went to the hospital where I was originally diagnosed at.  I was there a week and now have a good “team” of doctors.  I’m working with a pain management group for my pain medications.  I’m seeing my original oncologist, Dr. M.  I have a new primary physician, Dr. J, who works in this hospital.  There’s a neurologist who saw me in the hospital, however I don’t know if I’ll see him in his office anytime soon.  In any event, I think I’m at least settled in on doctors I can be comfortable with.

My MM is lying low enough that no treatment is required.  I have spinal cord damage unfortunately.  Nothing new about that.  This hospital did MRI’s and such and came to the same conclusion.  I must have had a stroke some time in the past, and near that T8 spot where I’d had a lesion, radiation, and kyphoplasty.  After the stroke, my spinal cord atrophied.  Thus, I have all of these horrible side effects now.

I’m continuing to work with my rehab doctor, Dr. P., on getting my bowel movements under control.  He tells me of success stories with paralyzed people, so surely I should be able to do this.  My body keeps changing things on me, so I don’t know what I’m doing really.  The last day or so I have been urinating on my own.  Once I had to catheter.  This is new and strange.  It’s not easy, but it did happen.  Now I feel like I may have to catheter again.  So, it’s tough and confusing that my body seems to go back and forth in its functioning.  Anyway, I’m trying to move forward, follow Dr. P’s instructions, and trust in him. 

While in the hospital they changed me from Morphine Sulfate 60mg 2x day to Methadone.  At first they had me on 50mg a day (15mg, 15mg, 20mg). My goodness, I was out of my mind and could not recall that entire week in the hospital.  Of course, in the hospital, they were also giving me morphine in the IV for pain. I have lots of nerve pain.  I think I have neuropathy pretty bad in my feet.  I’m now down to 7.5 mg of Methadone a day.  I take 2.5 mg 3 times a day.  We’ll see.  They want me to give it a chance.  I’m trying.  I seem to be doing better in some ways.  I’m having to work hard on my mental state, but I seem to be improving. 

I’m very very tired today for some reason.  I could just sleep and sleep.  I made myself get up at noon today and have  been up ever since.  I didn’t go to bed until 11pm.  I haven’t been sleeping well, due to the pain and spasms in my feet and legs. 

I’m going back to the pills I took from that Dana Farber Cancer Institute for Neuropathy and will see if that helps.  Acetyl L-Carnitine, Alpalipoic, B-Super Complex, B12, B6, and some other stuff…I don’t recall. 

Well, I’m really too tired to continue, but thought I’d put an update here.  I keep thinking I’ll get more faithful here.