Cindy’s Multiple Myeloma Blog

This procedure was ordered to check my upper intestines, to see if  I’m losing any blood which is making me low on iron, anemic, and very fatigued.  Ive just recalled that when I was first sick, being discharged from the hospital but not aware I had MM, the infectious disease doctor told me I was low on iron and to take iron pills.  I wonder if this is anything to do with what MM does to your system or if it’s something totally unrelated to MM??

Next week I also have an “iron absorption” lab test where the take lab work for a baseline, then you take 2 iron pills (a certain kind), then 1 hour later they do lab work, then 1 hour later more lab work, and then I think one more time. 

I have an MRI next Tuesday to confirm whether I have plasmacytoma’s on my left shoulder.  If yes, Dr. D would prescribe treatment.

Next Thursday I have the iron absorption test then immediately after it I see Dr. D to discuss all these test results and what is next.

I will not be able to afford any treatment that will require expensive prescriptions, so this will be interesting.  I imagine I’ll have IV (Velcade) treatments.  I believe these will be $40 copays and could possibly be several a month.  Not a lot of room left on my charge cards, so we’ll see.  I’m sure there may be financial assistance one way or another. 

I will be doing something this year, as I know I cannot continue like this.  I will be selling something, my acreage or side acreage.  At least I have options.  God will direct me. 

M-spike went up from 0.69 on 11/14/07  to 1.04 on 2/13/08.  Dr. D says she’s not too excited yet and won’t put me on any treatment for an increased M-spike alone. 

However, she’s pretty sure my left shoulder has got those plasmacytoma’s (myeloma tumors), so she’s having me have an MRI on it to confirm.  She will put me on treatment if my left shoulder does confirm plasmacytoma’s. 

She’s also having me take another test to check my upper intestines.  I guess the colonoscopy checks my lower intestines, the endoscopy just went down to my stomach, so I need this other test which is swallowing a pill that has a little camera on it I guess.  I will doodoo it out and oh my gosh, I hate to even think about this.  I’ll be given the details later.  I guess I’ll have to go to some place and they will give me the “pill” and provide directions.  I so do not want to have to do this, but we do what we have to do. 

She’s trying to check why I’m so anemic, like if I’m losing blood somewhere, if I understand correctly. 

She was showing another doctor my skeleton pictures showing him my lyctic lesions, whichc are places where the myeloma has eaten holes in my bone.  That’s probably not the right way to word it.  I do have some on my skull, appears to be just behind my left ear.  I knew I had holes in my head!!!  

I’m feeling both of these to an abnormally high level.  I know it’s part of the process to some extent, but I’ve got to get a grip on it.  I’ll be telling the doctor these symptoms and more on Thursday. I don’t really want drugs to take care of it.  Sheesh, one drug to perk me up and another one to take the edge off — the result might be frightening. 

My left shoulder pain is OK as long as I don’t lift my arm shoulder level.  So yes, the plasmacytoma’s are there, but for now I’m maintaining.  I’ll tell Dr. D. about this Thursday.  Looks like I’m going to have to start back on some kind of treatment.  But what happens when I can’t afford it?  No Medicare D plan is good for chronic illness.  Can people really afford over $4000 annually on prescription drugs?  I fall into the category of too rich for help but too poor to afford.

Not going to the bathroom very much (#1); going on 3 weeks where I have to go…but nothing.  I have to sit there a while, even when I have to go.  It takes patience then work to do it.  I think this has something to do with how I’m feeling both physically and emotionally.  You’re just not “right” when you’re not right…know what I mean?  I wonder what’s going on? I am not drinking lots of liquids. It’s so hard to do.  No pain or burning, though.

I’m not juicing or any of the extra healthy stuff.  Too tired- but I have to get a handle on this. 

One of those assisted living places or at the least a small duplex with yard work done for you sounds sort of inviting, but then what would I do with my 4 dogs, 4 cats, and 4 horses?  My dogs are old, though, so maybe I can wait them out a bit.  Also—some other options may improve my living arrangements, just make it easier to maintain – so this one is complicated but doable.  Just have paperwork and research to do regarding my living arrangements.  It’s probably best for my mental state to stay right here with my critters; they are my passion.  

It seems like such negativity is around me and I need to change this somehow.  Some things are beyond my control basically, but perhaps I can use meditation and determination and manage them.  I will know more of what I can do or at least try to do after I meet with Dr. D this Thursday.  Think I will set up an appointment with the Social  Worker, too, to discuss assistance with medications and which Medicare D plan to choose. 

 Ya know, one thing that has been frustrating with the Medicare D plan is that I’ve had several people tell me to get someone to help me, like a Pharmacist, Social Worker, etc.  I’ve tried to talk to 3 Pharmacies and they just don’t do it.  They point you the Medicare.gov web site and you must do your own research.  But patients like me needs someone to look over the medications I take, anticipate perhaps other medications that I may have to take considering my condition, and help me make a judgment call.  Isn’t that what they’re supposed to do?  Also, I don’t understand all the versions of the medications in the drop-down list.  The Social Worker was very busy but very nice last time I was in the office.  She told me to try it on my own but she’d be happy to help if I still needed it. 

So I’ve printed out some searches I’ve done.  Once I talk to Dr. D and see what treatments and new pain meds she may prescribe for me, I’ll talk with the Social Worker.  It’s just disappointing that the people who are supposed to be there to counsel you are so overworked themselves that they just don’t want to take the time. 

I think I’ve appeared negative to those around me for some time lately, but these challenges just take the wind out of your sails.  However, I’m a true survivor.  I get down, I get negative and all that bad stuff, but then I get back on my feet, get it taken care of, and start smiling again.  I know we have a  choice how we handle these things, and I like to make the right choices.  I’m tired of being negative. 

That familiar pain is back, but this time in my left shoulder.  When I first got sick my right shoulder had this excruciating pain and within a few days I couldn’t move my arm.  There was a puffiness about it, sort of spongey.  The Thalidomide killed off the plasmacytoma’s I guess, as I was able to move my arm again after about a month of taking it.  I believe arthritis or something set in afterward.  My shoulder is weaker and just feels like it pinches inside when I move my arm. 

Now my left shoulder has that same pain and pinching feeling.  A few days ago I had to take the break through pain pills. 

 I see Dr. D Thursday.  She’ll have results of several tests.  I’m getting very curious. 

I’m really fatigued lately, but I’ve been staying up late and lots of stressful situations, so hard to tell how much fatigue is due to illness versus what I’m allowing.   

Today I turned in my 24-hour urine collection, blood drawn, and received my 2-hour Aredia treatment.  Nothing eventful and no further information obtained relating to my symptoms.

 I do notice my right shoulder has a boney thing sticking up and it’s more pronounced.  This could be from losing muscle or fat or it could be growing.  Something is going on – or could be some ‘things’ is going on.  I’ve got to get better at describing it. 

When I first got sick, my right shoulder had a look from the side and I think it was something about the plasmacytoma’s.  The Thalidomide got rid of the plasmacytoma’s and it took about 30 days at least for me to be able to move my right arm shoulder high.  After that, though, looking from the side my right shoulder looked like it leaned forward.  My left shoulder looked normal; a side view showed a straight shoulder not leaning forward or backward.  Now both of my shoulders lean forward.  I feel a burning and achey soreness inside both my shoulders.  I don’t know if that is plasmacytoma’s or just arthritis of some kind. 

My knees are sore and weak enough that after sitting for a while, about 1+ hours, and I start to get up that it feels like I may not be able to walk or put my weight on my legs.  Then once I get going, I’m OK, though have a bit of a limp.  I  always grab a cart from the parking lot if possible so that I have support. 

I need to get adamant to Dr. D on my next appointment 2/21/08 so that she has me see someone who can diagnose what is going on.  I believe I may have something in addition to MM, whether it just be rhuematoid arthritis or something else. 

Symptoms are fatigue, no focus, anxiety, leg weakness, and joint pain. 

Joint pain and weakness are not “age effects” as it’s debilitating.  Other MMr’s in their upper 70’s and early 80’s and do not have this same trouble.  So, it is NOT age. 

Plan to, hope and pray to get committed to regular exercise to strengthen self and improve as much as possible.  Also get committed to taking supplements consistently.

Just hope and pray for consistency in doing what I can do to improve things myself.  I plan on investigating a local place for Physical Therapy that takes both Medicare and  United Healthcare Sprint Select.  When I see Dr. D in February, I will request a prescription for this.  Dr. D supported Physical Therapy for me saying that she thought it would be good and also help me to NOT injure myself.  I think since I had so many tests done since my first appointment with her, Cindy (her nurse assistant) got tired of so much research and  appointment setting that she wanted to put this off. 

I also plan to inquire about seeing another type of doctor to figure out what is going on.  Some type of arthritis as a result of the Strep B infection?  Explore out-of-the-box possibilities. 

I worked most of the day on my school loan discharge.  This has sure been a long haul, but I think it’s going to go through, thank you Jesus! 

If you are termed “Totally & Permanently Disabled” and not earning income, or at least under the poverty lines, and this information does not change for 3 years from the time of diagnosis, you can get your school loan discharged. 

I’m thinking it’s for my total loans, subsidized and unsubsidized. I don’t know the difference.  I am hoping it’s for the entire deal.  It would be the end of me if I have to repay them.  Plus, it’s even worse to think that I got my undergraduate completed in 1999 and graduate in 2002 and didn’t even get to put them to work.  

When I think about it, the cost of college tuition and medications are a crime!   

I’m going to try something a bit new.  I may have mentioned that I was considering transferring to Blogspot in an earlier post.  I’m pretty sure I did.  Well, I’m going to try and keep two blogs.  Lord knows I have the time. 

My intention for THIS blog was to be more factual and not get so whacky  and personal~ which is pretty much “me”.  One nice commenter commented they liked my blog and said it was “earthy”.  I like that.  Anyway, I will try to post “Just the Facts” here as originally intended.  What I mean by facts is my symptoms, perhaps some feelings if I think they are helpful to other MM-rs, doctor appointment results, etc.  I’ll try to keep this blog strictly Myeloma-related so that other MMrs may relate and we can be helpful to one another in that sense.  I think this format will better suit my original intention & that was to document my MM.  It wasn’t intended to get so contemplative at times.  THAT is just MY thoughts and really was the intention of this blog in the first place. 

Then, my other blog at “Blogspot” will be my regular personal blog, where I can get contemplative, whacky, or whatever I like.  I need that sort of place.  It will include my MM stuff, but also my full whacky self. 

This may not work, but I’m going to give it a try.  I like THIS blog because it’s identified as a “health” blog and I know people come here to find out information related to Myeloma & how it relates to themselves.  This way MM-rs won’t have to shuffle through the personal stuff, but just read the facts. 

I like the other blog because (1) can upload videos and (2) because I can get off the topic.  So folks, chose your poison:

Here, cakassel55.healthblogs.org= will be dedicated to just my MM progress, doctor appointments, etc. Will probably have less entries.  Entries will be posted as new symptoms or information are obtained & I feel it is worth noting.

Then, Cindylives.blogspot.com = This will appear just as this blog really.  I’ll include my MM progress but I will also get personal, contemplative, address faith perhaps, whatever comes to my mind.