Cindy’s Multiple Myeloma Blog

I’ve been waiting to have some kind of definitive answer as to what is going on with me before writing here.  Then, I’ve either been busy or too tired to blog.  But here I am, willing to give some sort of update. 

My sis and neice from Colorado have moved back here permanently.  So now I have two sisters and a neice able to help me go to doctor appointments.  That is a wonderful feeling.  I don’t know what I’d do without my family.  I would not have made it.  Really.  I just would not have made it.  When I first got sick and up until the past few weeks, most support came from my sis here, J.  She’s seen me through more emergency room visits and those initial many, many doctor appointments and treatments.  In the past few weeks my other sis and neice are starting to make up for lost time.  I have had doctor appointments or something of the sort nearly every day for the last few weeks.

I’ve also had some episodes with very unprofessional care from a nurse and a few doctors.  I’ve reported the nurse to her manager.  It appears they’ve had trouble with her before, but quite honestly, I have doubts she’ll be corrected.  I hate to say she should be fired, but she really should.  She does not belong in a nursing job what-so-ever.  She faked taking my blood pressure.  I told the doctor and he told me ‘it really was not a big deal.’  How very disappointing and shocking that there are these types of people caring for ill people.  The other doctor I was referred to has other issues.  My sister met him and was totally unimpressed.  Needless to say, we’re not impressed with the urology department at KU Hospital. 

It is tough to get sick.  Doctors and nurses are not all we used to build them up to be.  When you have MM, you just don’t have a lot of options.  There are not many doctors who specialize in MM, and if you want good care, you have to do that.  My doctor, Dr. Deauna, is quite good, though she has a quirky bedside manner. But she is good and I do think she cares for her patients.  She’s just very busy and intense..and then there’s a bit of a cultural challenge.  She only works out of KU Hospital, which I do believe is very good, but I sort of have to stick with KU doctors when she sends me out for tests. That way it’s all in their system and she not only has ready access to it, but she has it in their system as far as consistency in the format and quality of the report…whether it be an xray, MRI, whatever. 

It’s just tough getting sick when you don’t have good doctors or facilities.  What do you do? 

Much of the many appointments I had in the last few weeks are fallout from my May two-week hospital stay.  Somehow it turned into seeing GI doctor, urologist, neurologist, and nuerosurgeon.  However, I found an error I made throughout all of this, though not really my fault.  I followed instructions from the neurologist, assuming she was in touch with my oncologist.  I assumed this because she works through the same main hospital plus that she was one of the doctors listed for followup after my hospital stay.  I assumed Dr. Deauna was kept in that loop. 

Recall my last entry I indicated how Dr. Hammond ordered another LP (my 3rd since May) and she said that she felt the spot in my back was the cancer and not a ’stroke in my spinal cord.’  She did say that to me!  Yesterday at my oncologist appointment with Dr. Deauna, Dr. D. called Dr. Hammond on the phone and now Dr. Hammond thinks it’s no longer the cancer, but perhaps the stroke version.  Sheesh.  Dr. Hammond put me back on a low dose of steroids plus on Baclofen (for leg muscle spasms).  Dr. Deauna was not happy about me being back on steroids because they work with the cancer, but your body gets immune to it if you’re on it when you don’t need to be.  Dr. Deauna said she would have recommended an MRI to first see if there was any change in that spot first.  I’m having an MRI this Monday, per Dr. D’s orders. For the time being I’ll stay on the steroids.  I wonder if there’s no change in the MRI whether she’ll let me get back off of the steroids?  I hope so in a way.  I hate those evil pills.

My MM is still low and within reasonable markers, not requiring treatment.  If there is any good news, I guess that is it. 

I am feeling horrible fullness and bloatiness in my abdomen.  It gets hard sometimes.  Dr. Deauna had my abdomen xrayed.  It didn’t show any impaction, but it showed my bowels are interspersed with poo.  With my spinal cord damage, I guess my bowels don’t push the stuff down.  Let me tell you, that is one uncomfortable feeling, especially when your nerves are all weirded up and you feel every little thing.  It’s absolute torture!  Anyhoo, Dr. Deauna prescribed me some liquid sweet stuff that will move the “stuff” through my bowel. 

Earlier yesterday I had an ultrasound of my abdomen.  My nurse neice, Alisa, went in.  She noticed they focused on my liver alot.  I had the results faxed to me today.  I’ll have to tell my neice what they say to see what she says.  They describe some enlargement of the liver.  I don’t know what it is or why.  I don’t know what my doctor thinks of it.  I will call the nurse Monday and ask what it means.  I’m tender on the right side, which coincides with the liver.  I think the liver being swollen is somewhat what is making me uncomfortable. 

Dr. Deauna is changing my pain medicine.  I’m now on Fentenyl patches.  I can’t afford it, so they gave me a voucher giving it to me at no cost.  I am hoping I can do this through to the end of the year.  Next year I’ll have to change my Medicare D coverage so that once I hit the donut hole, I at least still am covered on generics.  Right now once I hit the donut hole, I have to pay 100% of my medications.  I think that will happen by November, maybe earlier.  Gosh our healthcare is atrocious.  It really is. 

Dr. Deauna changed my pain medicine due to my inability to eliminate urine at all on my own.  I’m having to catheter 100% of the time.  Most pain medications do that as well as constipate you.  I didn’t have problems on the Oxycodone.  Oxycodone is generic for Oxycontin.  My pharmacy told me that the FDA was pulling back Oxycodone.  So, when I was fearful not able to get the generic, as I could not afford the Oxycontin, I changed to Morphine Sulfate.  Morphine Sulfate is horrible for making it difficult to impossible for people to urinate.  So, the suspect is that perhaps the Morphine Sulfate is part of my problem urinating.  I don’t know.  If my bowels aren’t working so well, I’m thinking my bladder is the nerve thing, too, and not the Morphine Sulfate, but we’ll see. 

So far Dr. Deauna is leaving me on the Baclofen, but she may take me off it in the future and increase the Lyrica. 

So here I am, with the MM in check enough that I do not require treatment, but I’m having all sorts of problems due to the affects of treatments and medicines. 

This spinal cord thing, then, is back to square one: probably a stroke in the spinal cord at the T8 as a result of the radiation, MM, and regular aging.  It’s just a very small spot, I’m told, but it is a very critical spot. 

I have my home up for sale, plus a plot of land.  Once something gives and I can afford it, I will move into the first available one-level duplex in town.  It will be wonderful to be near other people and in an easier place to get around.  I have my eye on this one area that is for seniors.  I would be so happy there.  I went ahead and put my name on the list, just in case. 

As frustrating as all this is, I continue to see others who have it way worse than I do, as I go in and out of the hospital.  I’ve been doing some research and have seen where there are people who have gotten spinal cord injuries was more severe than what I have and it’s occurred when they were in their 20’s or 30’s.  I read one lady got an injury when her baby was 5 months old.  I watched a video as she was trying to just crawl on her hands and knees during therapy.  I would imagine she’s got to deal with bodily function things.  I just need to figure out how paraplegics do it.  Others do it; so will I. 

Filed under: Disability, Doctor Appointments and