Cindy’s Multiple Myeloma Blog

I found a Rehabilitation Doctor out south here.  Actually in Overland Park in the same building my urologist is in on Mondays.  I believe he works out of St. Joseph Hospital, which is good, as I really like that hospital.  I’ve only seen Dr. P twice.  I like him.  He’s very nice and right now that is very important to me.  I’m still haunted by Dr. D’s rudeness and the other doctors’ aloofness, judgmentalness, and egotisticalness (if those last two words are words even, but you get my point).  My new oncologist is full of himself, quite honestly, and he’s known for that, but he seems semi-kind anyway.  Dr. D was just overwhelmed and way too busy for her own good.

Dr. P appears to be quite knowledgeable and he’s very very nice.  He’s taking time to get to know me and working on one thing at a time.  Right now we’re working on getting my bowel movements in order.  They’re not in order yet.  He has me doing 3 things the same time every day in order to retrain my body into having BM’s on its own.  (Isn’t this a nice topic? Answer: No.  But, this blog is supposed to be honest and hopefully help others if they find themselves having any similar issues.)  OK.

So, every day at the same time I’m supposed to insert one Ducalex suppository, take fiber, plus stool softeners.  Then I adjust things as needed.  It’s been over 2 weeks and still my body is not working right.  I can not express how uncomfortable it is not to eliminate properly.  It’s not only uncomfortable, but it’s quite scary at times. 

There’s been a few times where I’ve tried something to help me along, like Phillip’s Milk of Magnesia or Bisacoydl pills.  The day I tried the pills was awful.  I don’t know if it was just a coincidence that I had a migraine or if the pills and my issue combined caused the headache and abdominal pressure, but I thought I was dying, seriously. I thought I was going to pop.  It was the day before Thanksgiving and I knew everyone was preparing for the day, so I didn’t want to mess up anyone’s holiday.  I just figured if I popped, I popped and maybe someone would find me! Ha! That sounds funny now, but I truly was quite frightened.  I called my son about 9:30pm the night before and asked him to check on me the next morning.  I prayed as I tried to go to sleep.  God answered somewhere in the middle of the night.  The pressure I’d felt all day and into the night worked themselves out somehow.

Then the Milk of Magnesia. I tried it last Saturday night.  I was having issues Sunday early morning.  Both times I’ve had to cancel out or delay previously made plans.  It’s so upsetting to be in this condition.  I am beginning to wonder if I should even ever make  plans, as I have had to cancel them.  I don’t want to give up and I “try” to get out and live and do things, but I most often have to cancel.  Sometimes I wonder if I’ll ever get this part of me resolved.

I see Dr. P sometime in January.  He’s going to do that EMG test, but I think only on my upper body.  I do have numbness and little electric shocks occurring in my arms and hands, so he’s checking that out.  I have to wonder still what is going on in my lower half.  While I like Dr. P and think he’s good, he is not a neurologist.  I believe that I’ll have to go through more MRI’s and testing in the future to assess what is going on.  I’ve been through so much testing already and there was so much commotion with the “bad doctors” and now I’ve changed doctors, that it’s just time to rest for a while. 

I have a feeling I will be changing oncologists again in the future.  I was not aware that the hospital my current oncologist works out of may not have the experts in all the other areas I have issues going on (e.g. neurological, urological).  If I’m sick and then need help in those other areas, well, this hospital doesn’t have the same caliber of doctors.  St. Joseph does.  if I get sick, I’m going to go to St. Joseph.  At that time maybe I would just change oncologists then.  My very first oncologist works out of St. Joseph. 

This changing doctors in midstream of this spinal issue has been difficult. 

Oh, good news in early December.  My “numbers” are good and actually a bit lower than the measurements in October.  That is good.  My main issue is the spinal cord damage.  I need to learn how to survive.  And, I think my dilemma is 1) I haven’t had a good doctor to really summarize in totality what is wrong with my spinal cord.  I think it’s more than just the T8 and 2)transition of changing doctors–oncologist wants to handle only cancer issues so I’m on my own to get the other resolved. 

Usually cancer patients are just dealing with their cancer.  I’m dealing with my cancer plus my spinal cord issue.  This spinal cord issue happens to be very life altering. 

I feel like such a hassle to my family.  I am a hassle.  But I plan for things to improve in the near future.  Once I get things settled as far as moving in completely here and moving things out of my old home completely (things are still there) and also once I close on the sell of some land, AND once spring comes and the weather is not so bad, THEN things will be easier to get on top of. 

Great news about one of my Arabs.  The people I gave my Arabs to called to inform me they sold the mare to a wonderful lady who was looking for a horse that fit Mazey perfectly.  I’ve been in contact with this individual and Mazey could not be in a better home.  Her new owner spells her name “Mazzie,” so “Mazzie” she will be from now on.  Her new owner is also going to think of a new name for her when the new name comes to mind.  This lady sounds absolutely wonderful and keeps journals on her horses.  We’ll be in contact. 

So, my 3 dogs and Mazzie are in better homes than they were in even when I had them.  I couldn’t ask for more for my beloved pets.  I had to have a little cry about this today, but that’s OK..the tears were selfish tears for me, but happy tears for my pets. 

I plan on things to improve.  I’m going to think in that direction.  I have challenges right now, that is true. but I still have so very much to be thankful for.