Cindy’s Multiple Myeloma Blog

My other post was so long, I wanted to put this thought in another post because I think it’s significant. 

It’s constantly on my mind why I’m such a wimp and not feeling as well as other MMrs seem to feel.  My IGG serum is in the normal range, my m-spike is way low, X-rays and MRI’s don’t show significant MM stuff or osteosporosis stuff going on, so what is my problem?  I take 120 mg of Oxycontin (oxycodone) a day and still hurt, so why do I feel so bad?

I recall the difference in how other people found out they had MM and myself.  One lady’s optomistrist noticed she had too much protein in her eyes.  Others broke a bone just from lifting some light object.  Some were anemic and the doctor ran tests.  Some kept getting pneumonia and the like (thus immune system).  I got a Strep B infection.  We all can get Strep B on our skin, but our immune system can handle it.  I was 60% cancer cells in my marrow at the time of diagnosis, as many other people were, some way higher than that even.  “I” just happen to get Strep B – I wonder from the fitness center when I worked with weights–on the equipment.  Who knows. 

I remember how this evil pain traveled through my body over a 20 or 30 minute span; it went from my ankles, to my knees, to my hips, then to my shoulders.  All my main joints. 

I recall the doctors saying that sometimes when an individual gets Strep B, that arthritis (or was it bursitis) will settle in a joint.  (ahaaaa!)

At the support meeting the other night when we were all talking about our MM stories, Ann, the facilitator said “remember, we could have more than just MM.”  Ahaaaaaa.

I will bet that I have whatever it is (arthritis or bursitis) in my joints now after that Strep B infection.  I had it so bad that all my major organs were not working properly.  My heart was functioning at 60%, my gall bladder at 7% (that’s why they removed my bladder).  I forget my liver but it was swollen with a fluid around it and the doctors kept asking if I had a drinking problem.  Obviously I had a Strep B infection very bad.  They were putting penicillin in me through an IV big time.  As one doctor said, they “pulled out the big guns.”  I never was allergic to penicillin but became allergic after that.  I began to swell. 

Anyway, I will bet that that darned Strep B did something to me where it caused damage to my joints.  I don’t mind them removing my gall bladder, I felt better since they did.  I doubt it would have improved and when it doesn’t work, you feel nausaus.  I felt instant relief once they removed it.  Want to know how tough I am?  I remember after they removed my gall bladder climbing back into the hospital bed by myself.  I was amazed that my stomach was not all that sore.  They did it whatever that way is where they poke three little holes, one being your belly button and where they remove your gall bladder through.  But after I was wheeled back to my room from surgery, I was more awake than I was yesterday and able to get up out of the wheel chair and into my bed with no assistance. 

So I think I’ve figured something out and will definitely tell Dr. D about it.  I hope she takes the time and listens to me.  After my first meeting with her, she seems in such a rush – in which she is.  She sees probably most the  people in this area who have MM.  That is both a good and bad thing.  I will just prepare myself to get her undivided attention.  I will need to be politely firm and make sure I get her attention and respect.  That part is up to me.  (I’m cheering myself on here.)  I don’t want to paint her out to be a bad doctor, but she is very busy so I must be sure I utilize her time wisely. 

Well, there it is.  One must step outside their bubble.  I’ve been in a bubble.  I’ve felt so outside my body, like it was some different container than “me”.  It’s really a foreign feeling.  And when you first get cancer, you feel like there is an evil monster inside you.  I think only another person with cancer can understand that feeling, but others could surely relate.  You are so anxious to get it out.  I was so anxious to start on treatment to fight it.  I think after being so sick at the onset, I was ready to try anything, even if it was poision.  It was poision fighting another poision.  It had a head start on my body. 

Then your body begins to feel so different and you feel so out of control.  You’re out of control of your cancer, your body functions, and how your body feels.  Every little feeling becomes the cancer.  All that is not true, but you don’t realize that yet. 

I don’t know if this is a good thing or bad thing that I realize I have something else going on than MM (Multiple Myeloma).  If it’s only some type of arthritis, maybe that is OK.  I just hope it’s not anything more weird.  I have a weird type of cancer, so I feel like I have my quota of weirdness. 

But it’s coming together for me.  Maybe being so drugged after my colonoscopy/endoscopy gave me time to rationalize and put it altogether.  Also, coming off the Revlimid/Dexamethasone has helped.  That is powerful poision going in your body. 

I feel like I’m on a better path now.  It will be good if I can get an answer to this.  Then I’ll know how to treat it.  One thing, babying myself and not moving around would be bad.  Exercise and stretching will help tremendously.  I will begin taking Ibuprofen for the inflammation.  I do want to see if I can lower my Oxycodone again.  I tried it a few weeks ago and it did not feel good.  I will try it again.  If I must continue taking it, I’ll have to accept that.  Of course, I’ll see if Dr. D agrees with the Ibuprofen.  If she thinks I need to see whatever type of doctor would treat whatever it is (arthritis, bursitis, etc.) going on in my joints, maybe there is another type of medication I should be on.  I hope not in a way, because there is always side effects to medicines. 

I do want to do the things that releases toxins, like dry brushing and epsom salt baths.  I think also meditation.  Our brains are very  powerful things.  God gave us brains but what is it, we use only 10% of them?  I will use both meditation and faith to also treat these symptoms. 

Hoorah!  It’s overrrr!  I can eat, drink, and be merry! 

As usual, my faithful sister Joy took me to do the dirty deed.  It was a good excuse to get together as she took me to all my initial doctor visits and treatments.  I get emotional when I’m alone and think of these times with her.  Words in a journal cannot express my feelings.  Let me just say that Joy is the only one who is here for me, regardless of what is going on in her own life.  So, need I say more? sniff sniff.

OK, I might be feeling a bit sentimental; leftover from the anesthetic, yet true feelings.

The procedure was performed at KU Hospital.  While KU might be known as a great hospital with great doctors, (i.e. doctors teaching doctors), it is old, complicated, and crowded.  We followed a maze to get to the GI procedure place.  It was down a hall, to the elevators, down a hall, turn a corner, turn another corner, across a tunnel to another building, down a hall, down another hall.  You’re there.  If that isn’t correct, then it’s very close and only more complicated.  I was disappointed at how cramped the initial room was where you get undressed & IV’s started.  Put it this way, a person could stand between beds and have hands on both beds.  The curtains could not be pulled to give you complete privacy as you undressed.  You had to stand in the right corner to be hid from outsiders and the patient next to you because the curtains went around maybe 3/4 way.  The curtains come down to maybe your knees or a bit higher. 

The nurse assigned to me was a middle-aged, in-training male nurse.  I was nauseaus from the prepatory regiman, weak, and had a mild head ache enough that I just lay there not able to protest much.  This male nurse was nice, though.  When he was ready to start my IV, someone had taken his chair so he said he’d “try to do it on his knees.”  I’m thinking, ‘oh boy, this only gets better.’  I told him he could sit on my bed, but he said that would not work.  Once he got on one knee he remarked how it hurt, but he thought he could still do it.  I thought, ‘oh boy’ some more! He got something poked in and realized he’d forgot something so went over to the cabinets on the wall.  OH, by the way, I happened to get the bed right in front of the door to the hallway.  I felt on display a bit.  {side thought: Is part of the preparation of not eating, drinking that nasty stuff & getting so weak to make the patient too weak to protest?}

So, new male nurse puts whatever he’d forgot on the gadget he’d stuck in me {I wouldn’t look. Once when I tried the lady nurse who came to help him wouldn’t let me look.} So he said to the lady nurse around, “I’m at the same point I was yesterday.”  The needle wasn’t in right.  From what I’ve heard the nurses say from the numerous times I’ve been stuck, they hit the back of my vein and so they can’t get blood OR get the IV fluid to flow…ya know, the two-way thing.  As the lady nurse came to help I mentioned that I’ve heard other nurses say that they have to pull the needle back just a ways because it’s hitting a wall in my vein.  I guess I helped, as the lady nurse got it working.  She said she had to pull the needle back not quite to starting over, to get it working.  I’m glad I was able to assist them.  I sure felt her moving the needle around.  I’m realizing how good I’ve got at this because I cannot stand needles!  To think I’m having to put up with this now is ironic to me.

I was beginning to think I was with a bunch of beginners or rejects when I was transported to “the room.”  There was lots of discussion between my male nurse and the others.  It was as if they were making fun of him or giving him a hard time.  I felt sort of bad for him.  Really, I think he’s got lots of potential and that he’s just a perfectionist.  When he put the needle in my arm, he was very gentle and it barely hurt the way he did it.  He asked for help before he started twisting the needle around.  I do think he’s going to be a great nurse.  I also think something isn’t quite right with him, but I don’t know what it is.  I could be wrong that the others were poking fun at him, but he was explaining what and why he was doing whatever he was doing – he was taking it so seriously.  Maybe they were trying to buddy with him but whatever it is with him, he took something serious that was meant in friendly fun.  Who knows.  It’s sort of awful when a patient can sense something going on between the nurses and doctors and such.

So, I’m in “the room” and a very nice Indian female doctor came to ask me questions.  I forget her name.  I am describing genders, nationalities and such just to give you as clear a picture of this.  I guess I’m sort of anal.  If I didn’t think it’d bore you and if I could recall as much, I’d tell you everything about the room, walls, etc.  When she finds out the colonoscopy was prescribed because I’m low on iron and anemic, she suggests I also get an endoscopy performed in case nothing is found from the colonoscopy; this way I don’t have to go through this twice.  I agree.  She gets agreement from the other doctor that I guess is performing these procedures on me.  The other doctor, a young white man but balding a bit, greets me and tells me he agrees with Ms. Indian doctor, and he assures me that they use a smaller hose for the endoscopy than for the colonoscopy.  I tell him I’m only concerned they use a different hose and he laughs and says that is a good question and assures me they use a different one.  I always joke.

They have me turn on my left side.  You know this makes it easier on them.  This part makes you realize that once you go under someone is going to lift the blanket and see your bottom.  Ohhhh that is embarrassing, so I tried not to think of it too much.  A very nice black nurse with really pretty braided hair talks to me and tells me they’re going to put me under.  I really liked her.  I tell her I’m a little embarrassed and she says not to worry about it, that they are so used to it.  She tells me to dream nice dreams.  I tell her I’m going to dream about riding my horses.  I’m out.  That is the nicest feeling when you first go to sleep.  I’m not one for drugs.  I hate taking medicine and drugs, but I could get hooked on that feeling just as you go under.  Ohhhhhh it is GOOD. 

When I had my first colonoscopy in May 2005, I did not remember a thing of the procedure.  You go under and the next thing you recall is someone telling you “You’re done.  You did good.”  It was sort of true this time, but, I do have a moment in the middle of the procedure where I was coming awake.  Before the procedure, the nurse that helped the male nurse with my IV told me that IF I begin to wake up, to just wave a hand to let them know I need to be put out some more.  (Oh boy..) It must have been somewhere in the procedure when they began the endoscopy (going down my throat.)  I remember feeling something really hurting and I think I remember something in my mouth and throat.  I bet they were just putting it in or something.  I began fighting it a little and they told me to swallow.  I recall trying to swallow (I am so obedient for these types of things, you wouldn’t believe it.).  So, I swallowed but I felt something so painful I started to struggle.  I don’t know what I was doing but they must have put that knock-out medicine in me very quickly because that is the last I recall.   Next thing was a nurse next to me back in that first room telling me “it’s over.”  I don’t even remember getting dressed.  Joy was there.  How did I get my bra on?  I’ll have to ask her.  I now wonder about that curtain and privacy but Joy is real good at protecting me, so I’m sure I was hidden.  It’s weird, now that I think about it, but I don’t recall getting dressed at all.  I could not stand up very well.  I kept leaning and falling and Joy would grab me and I’d grab on to the bed.  They wheeled me out in a wheel chair.  I kept nodding off to sleep.  They left me in a wheel chair at the doors and Joy got the car.  I nodded off to sleep in the wheel chair. I don’t remember if someone was with me in the wheel chair or if I was by myself.  I’ll have to ask Joy that, too.  Joy stopped by CVS in Lee’s Summit on the way home so I could fill a prescription.  I was so hungry that I bought $10 worth of candy bars.  I got 2 Heaths, a package of Kitkats, a package of Mounds, and two other kinds I don’t remember.  What about my juicing? heeee.  Last night I ate several Mounds and one Kitkat.  I wonder what the CVS lady thought of me?  I was soooooo drugged and out in public.  Joy was looking around CVS at the time I was waiting for my medicine. 

Then we went to Waids and ate.  We both got breakfast and by this time it was probably noon or after.  If I recall, I got two eggs sunny side up, 2 bacons, 2 pancakes, and toast.  I did not clean my plate but I ate more than Joy.  She was still a little full from her first breakfast, whatever that was.  She told me but I forgot.  I think oatmeal.  She likes that instant oatmeal–the one with maple or brown sugar or something like that.

They give you pictures of the procedure and they’re very colorful.  It’s amazing.  Everything looked gread.  They did take a biopsy just routine, but everything looks great. 

Today I notice soreness in my throat.  I now recall they had me gargle with some solution that numbs your throat.  They ask you to do two gargles with it.  I’m a little sore inside, which they say is normal.  I don’t remember it last time, but I probably was and either don’t remember or didn’t notice it.  I often overlook body pain until it gets really bad.  Doctors and nurses have often been amazed at how much I hold back.  So, when I do complain, you can bet it’s pretty intense. 

Speaking of pain, this morning it just dawned on me what is going on with my joints.  I’ll save that for another entry, as I know this one is very long.