Cindy’s Multiple Myeloma Blog

Here’s my factual doctor appointment entry. 

Saw Nurse Practioner, Jan, today.  No labs or anything else was done.  Jan talked to Dr. McGuirk just before she saw me and they are going to have me start seeing Dr. Deauna, who is the Myeloma specialist doctor. 

Will cancel the 2008 Physical Therapy (PT) appointments scheduled at KU and have Dr. D. recommend either another place closer to home or have me work through the weakness problem with another doctor who handles neuropathy issues. 

My IGG numbers increased from 1100 on 9/12/07 to 1260 on 11/14/07 to 1480 on 12/12/07.  Normal range is 762-1488, so I’m OK, but will need to get on treatment fairly soon.  Jan says you never know when they can just spike up by 500 or 1000 within a month.  I did that right after my SCT (stem cell transplant).  I went from 1200 before SCT to 33xx within 60 days. 

I told Jan about my fingers and toes being so painful and about my legs having that RLS so bad at night.  She said that neuropathy can come out with many forms and not just numbness and tingling.  I think seeing the new doctors will be a good approach for me. 

I found a bit more about nutrition and immune system and how it relates to MM.  Don’t expect anything scientific here–but Jan explained how myeloma is in the bone marrow.  Well, that’s where you’re immune system is sort of created, so you’re hosed from the start.  If you have a lymphoma sort of cancer, for example, building up your immune system by holistic, etc. methods might help the battle.  But, when you’re cancer starts right there in the marrow–where the blood cells are born, you’re out before you hit the start line I guess.  I was asking her about doing things like juicing carrot juice and the like (beta carotene-cancer killing) and that’s how we got on this subject. 

There are various types of MM (mulitple myeloma); I have IGG.  I don’t know if this is yet another category or whatever…but MY area of MM is the area of  “Free Light Chain Lambda.”  Gosh this is a complicated cancer.  There’s some helpful websites I’ve been referred, but the dialogue is so above my “know how level” right now.  I guess there was a time I didn’t know as much as I do now..so maybe some day..??  There’s also “Free Light Chain Kappa”  - but I’m “Lambda.” 

There’s something about chromosones and genes or something, and how one responds to treatments depends on these things….urgggg…I hate this stuff.  It’s something like ‘I can’t compare how I’ll respond to a treatment to another patient’ because it depends on these certain ‘genes’ or whatevers…and there’s so many, like 600 or is it in 1000’s….I don’t know.  But this is all in the MM research and progress is being made!  That is the good news anyway.  There’s been lots of progress.  Where it used to be people certainly died within 3-5 years and didn’t have much a quality of life with the treatment, the lifespan and quality of life are improving.  It breaks my heart to ever imagine one of my boys with this.  They say it’s not hereditary but then I did read if someone has it that certain relatives should be tested for it (as it can lay dormat…think that’s called MGUS).  See, that’s why they call this cancer “the beast” because it is BEASTLY!

Back to Jan and our discussion about whether to try juicing in order to improve immune system, etc., you never know and she surely did not discourage me from trying natural stuff like that.  I still intend to do that [juice, supplments, etc.]–I just can only do so much at a time.  Right now I’m trying to survive this cold weather, new insurance company for 2008, investigating the effects of Medicare on me later this year, finances, cluttered home, and several other necessities while combatting extreme fatigue/pain….that my health/life often takes a back burner.   But, as Shelia and I always say, “It’s going to be wonderful in Heaven—what fun awaits us!”  Can’t wait!

I know that when the weather warms up and if I can attack my home with organizing and cleansing I’d make so much more progress.  I’m in a mode where my home grosses me out.  It’s old and yucky.  Logically, I should sell all, horses and everything, pay off all my debts and move into something easy to care for and clean.  I would honestly like that - but my heart would be jerked right out of me for all the animals I’d have to leave behind and get rid of.  I’m at such a loss over this dilemma.  Pets have always been a major part of my life. It’s simply not realistic when those who are not into animals suggest I get rid of them all-or even some.  For me, it would like discarding one of my family, my children at a young age when they depended on me.  That is exactly how it feels to an “animal person” such as myself.  It’s a miserable way to be sometimes! ;(

Well, here I go again.  This entry filed in “Doctor Appointments” digressed to “thoughts and feelings” and the like.  Oh well….such am I. 

…..now…to my Hot Chocolate…good night.

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