Cindy’s Multiple Myeloma Blog

I spoke to the two nurses today, Cindy & Marilyn. They were for Dr. D. whom I no longer like.  They were nice today though I felt they sided with Dr. D earlier and were exasperated.  Whatever.  Here’s the deal.

The results of the ultrasound I had last Thursday, just before my doctor appointment, where Dr. D acted like a jerk are:

1. mild hepatomegaly with mild diffuse fatty infiltration of the liver
2. surgically absent gallbladder (I could have told them that)
3. prominent extrahepatic biliary ductal dilatation

I don’t know what all that means. I know I have what is called  a ‘fatty liver.’  Anyway, Dr. has passed on lots of information to another GI doctor.  Well, actually to two doctors.  I will see two doctors.  They’re in the same office as the other Gi doctor, Dr. A, I saw.  I’d told Marilyn that he wasn’t very thorough so they’re sending me to these doctors.  I’d been planning on going to my PCP doctor and going to a GI doctor she referred, but since I’ve come this far and we’re trying two new doctors, I’ll try this.  However, I am making changes going forward yet.  It’d just be too much starting over at this point.  Apparently Dr. D has realized that there is something going on worth checking out.  My stomach is swollen and I think whatever it is, it is what is putting the pressure in my private parts. 

Then, I had an MRI done Monday.  That spot at my T8 has disappeared!  There is scar tissue.  Marilyn is going to look for me a “spinal rehab” place close to where I live.  She said something about them helping me build up my muscle so that I don’t lose any more muscle.  I’m to remain on steroids for a while longer.  Next appointment with Dr. D is 10/2.  The appointment with the new GI doctors isn’t until 10/6.  I sort of hate waiting that long, but if I start all over with my PCP, have to find a new GI doctor, go through more tests, etc., then it would probably be longer than 10/6.

I’ve been trying to research doctors in the area for Multiple Myeloma.  I just need an hematology/oncology doctor.  I was discouraged yesterday finding out that the St. Lukes Health group are dropping UHC February 2009.  I’m on Medicare with UHC as my secondary.  I need that secondary, as chemo and such gets very expensive and I need something to pick up what Medicare does not.

So, I will just get through this stomach swelling thing for now.  I will work with the Spinal Rehab group and possibly look into getting one of those Hoveround wheelchairs, but I don’t want to depend on a wheelchair too much.  I’m just too weak and unsteady to rely on walking to far, even with a walker.

I’m canceling my future appointments with the neurologist, urologist, and other GI doctor.  In the meantime I’m going to verify the urologist I used years ago when another urologist injured my ureter/kidney, that he accepts Medicare and UHC.  If so, I’ll have the yucky urologists from KU transfer what tests and records they have for me to my Dr. F.  Then sometime in the near future I’ll check up with Dr. F.  It might be good to get this GI thing situated before I see Dr. F. anyway.  I think whatever is going on is pressing down on my bladder.  If I get it fixed, it may resolve my having to self-catheter. 

Gosh my body is jacked up.

So, my cancer is laying low for now.  I need to get these things squared away as best I can before it (the cancer) may rear its ugly head, if ever.

I need to get a handle on my spinal problems.  That’s tough, but others do it.  I will, too.

I just wish I knew what this pressure is in my stomach.  I feel like I’ve been screaming about it for a while, but no one is listening.  That original GI doctor goofed.  I hate to say this, but I think part of the problem is cultural.  He’s Indian.  He has a hard time looking me in the face, as it’s not acceptable for men to look directly into a woman’s face.  He never lay a hand on me my first appointment, checking out whether he felt anything odd in my stomach.  I was complaining about feeling bloated!   Then my sis and niece came along the second visit and they asked lots of questions and kept going on how tough a time I was having.  He basically said I should be thankful for what I have, get used to it.  To appease some questions Alisa kept asking, he had me lay down and pressed on my stomach some and didn’t feel anything. 

My stomach is as if I’m 7-9 months pregnant and sticks out more to the right side.  He did order the ultrasound that provided the results above.  I haven’t had the followup with him since the test, but he muffed it since he pootered around in the first place.

For now I will stick with Dr. D. while I get the stomach thing identified, if possible.  And also, I’m biding my time while I research for another good doctor that my insurance covers.  I need to make this move wisely. 

It is scary to get too sick, especially with something so rare as Multiple Myeloma.  Then the side effects from all the medicine and treatment just leads to so many complications.  Of course, for any MMr’s out there, I am a fluke.   Not everyone has this much trouble.  I have not met one other who has the same problems as I have.  

Also, I look forward to moving into a one-level duplex with easy upkeep as soon as feasible.  That will be wonderful.  God is handling it: the timing of selling my home and land plus the opening of a duplex or retirement place.  It will all work out in God’s timing and I think it will be fascinating to see how it all falls perfectly into place. 

I have old dogs whom I’m sure are on their last phase.  It sounds like I’m wishing them to die.  I’m not really.  I mean, I do hope they die a peaceful death and I hope it’s before I move so that I don’t have to uproot them.  Buddy (lab) doesn’t feel good.  You can see it.  He’s not to the point you’d put him down, though.  And, who knows, there are duplexes for sale.  Perhaps my place will sell and I’ll even be able to buy a duplex.  Then I can just take old Buddy with me and fence the yard.  Like I said, God is handling it.  He loves his creatures and he’ll make sure they’re OK. 

Filed under: Disability, Doctor Appointments, Faith, Multiple Myeloma and