Cindy’s Multiple Myeloma Blog

You may recall I’d addressed Dr. D, my oncologist a while ago.  I didn’t like her.  We just don’t communicate very well.  Actually, she doesn’t communicate well with lots of patients, it’s a weakness of hers.  She is smart.  She is good as far as not wanting to overtreat.  I do think she truly cares for her patients.  However, she doesn’t listen as thoroughly as I think she could.  She is abrupt.  She’s overworked and too busy.  Not my problem. 

After I saw how nice she could be when I was hospitalized and even during a few other office visits, I had a change of heart about her and actually claimed I was glad I stuck it out with her.  Well, I’ve changed my mind.

I won’t go into the ordeal which has made me change my mind about her again, not so much because I don’t want to, but because I just don’t understand what her problem was that caused her to act so defensively, rudely, and unprofessionally.  Doris and Alisa (sis and niece) were with me, thank the Lord, so I now have witnesses, and smart witnesses at that.  Alisa is a nurse, so she not only is medically adept, but she is well aware of how a doctor should or should not treat a patient, no matter what.  Let me just say, they both lost respect for Dr. Deauna plus came real close to telling her off during the visit.  By the end of the visit, Dr. D had settled down and was OK, but the damage was done. 

Alisa just moved back here from Colorado.  She begins her new nursing job at a hospital in Independence.  She still knows some doctors from when she used to work here.  She’s going to look around for me plus I’m going to re-investigate for some doctors around here who specialize in MM.  That is the difficulty, there’s just not a lot of options when you have MM. 

I know of one doctor who is in an office not so far away.  I recall not liking the hospitals he works out of, but maybe he now works out of the one my niece will be working at.  I can only hope.  Either way, I’m changing doctors as soon as possible.  We’ll set up a consultation.  Hopefully I can have both Doris and Alisa and maybe even my other sis with me during the consultation.  They’re all my main caregivers and supporters.  Gosh I’m lucky to have two wonderful sisters and a very loving niece.  I am so blessed. 

I have come to the point where I would rather have a doctor who is caring and compassionate and whom I can at least have a decent conversation with without feeling so vulnerable.  Maybe my new doctor won’t be as much an expert in MM, but maybe so.  Just because Dr. D is supposed to be so good doesn’t mean she’s applying her talents so well.  I would rather be treated nicely on my way out of here.  I want to be physically comfortable, so I just want a doctor who will address my physical issues so that I don’t suffer. 

Right now I’m not getting any of that kind of support.  Dr. D has ordered lots of tests, don’t get me wrong, but it’s taking too long and she’s just not listening.  She’s just too busy.  Maybe she just has too many patients and so her ugly side shows.  Whatever.  Not my  problem.  

It’s sort of confusing what is going on with me.  My MM markers are low and don’t really show evidence that my MM is being active, but there are other signs that could be the MM.  My liver is acting up, it’s enlarged.  My potassium is low.  I’m anemic and there’s one more thing, I can’t recall.  None of the medications I’m on makes me anemic.  It’s like the MM could be messing with something.  Who knows.  Alisa and Dr. D discussed this and Alisa was able to translate it to me better.  So, I just don’t know what is going on with me.  My liver might not be a big deal, but I just don’t know.  I will call the nurse Monday and ask her if I need to be concerned with the results of the ultrasound and blood tests. 

I still have to look around me so that I can be thankful for what I do have or do not have.  I went to a “purse party” at my niece’s today.  A young mother I know, Kristyal, was there.  She has a little girl about 6 years old plus a 1 year old baby boy.  She just found out her daughter has a tumor behind her eye, in front of her brain.  It’s benign but uncurable.  They’ll eventually have to either do chemo or radiation, as it’s pushing against her brain.  For the rest of her life, the little girl will have to have MRI’s every 3 months!  Now, do I have it bad or does that little 6 year old have it bad—or her mom and dad?   

Then, I am miserable feeling with this nerve damage. I can not express the pain and discomfort that nerve damage causes.  Nerves are maddening little evil things.  Just think how it feels when your foot is asleep and has ll those little tingles.  They are powerful and hateful little things aren’t they?  My toes and feet hurt so bad.  When I walk it’s like I have a hard cord under my foot.  My toes, each one, hurts and feels like it’s touching the one next to it.  My calves hurt and feel hard and yucky and my legs are just stiff.  I can hardly bend at the ankles.  Oh, I can just go on and on.  Well Alisa and I had been talking about things I can do to help with my digestion and bowel movements.  I was told to google “spinal cord injury at the T8.”  I came upon a young mother who had a 5 month old son.  She had some hereditary thing where she suddenly lost feeling and use from the T8 down.  It showed her in therapy, on her hands and knees, trying to crawl.  Oh my goodness, it was very sad!  But she had a wonderful attitude.  They talked about her positive attitude and she talked about how pleased she was with all of her progress.  I haven’t tried to get down to see how I can crawl, because I’m afraid I might not be able to get back up, but, I would wager I can crawl better than her.  And guess what?  I don’t have a 5 month old baby.  I was able to hold my babies and walk around with them.  I was able to jog with my boys as they got older. 

I think once I get a decent doctor whom relates better with me, my attitude will improve immensely.  My MM is what it is, whether it’s aggressive or not.  It’s going to get me or it’s not.  I’ll do the best I can, but in the meantime, I first want to be as comfortable physically as I can, and then right next to that in importance it will be wonderful to work with a doctor with manners.  If I’m going to die with this disease, then let it be with comfort and manners rather than discomfort and rudeness. 

It may take a few months or so to iron all this out, but I will be changing doctors and it feels like the right thing to do.  Gosh I’m glad I have good family support.  My heart just aches for all those who do not have the caregivers that I have.  I am so blessed. 

Filed under: Disability, Doctor Appointments, Multiple Myeloma and