Cindy’s Multiple Myeloma Blog

I’m going to try to refocus THIS blog to the purpose I write in it.  To refresh you, this blog is meant to stay more medical, symptom, and the like regarding my experience with Multiple Myeloma.  Recently I’ve sort of swayed.  I have another journal, as we know, which entails not only my MM stuff, but it’s more personal and spiritual, etc.  I’m likely to go off on any type of topic.

As for here, I’m here to share my experience in order to help others, whether they have MM or some other illness or if he or she is a caregiver.  It’s just a “helping” blog, more or less.  I am very open and blunt usually about myself, especially my bodily functions and my thoughts.  So, if I can share and help, I’ve accomplished my purpose.  Also, I may receive the same benefit by reading other’s blogs, which I’ve realized I’ve not been doing on here.  There are those of you who comment, “Beth” faithfully, that I found first and then joined this blog.  I need to read these other blogs for my own benefit as well.  Oh well, it’s a journey yet, isn’t it.

OK, here’s my break through I think.  I woke up this morning at about 4:00AM or a little later and I had to go to the bathroom.  My knees, especially my right one were so very sore.  I have a high  pain threshhold and I just get through things like that, but this pain was a pain that made me want to rock my body back and forth.  Worse and scary yet was that I could not walk.  It was so scary.  Was I ever glad that I bought that walker!  (Have I said that in this blog yet? Well, yesterday I bought a walker with wheels and a little basket and seat…thank goodness.) 

Right now I don’t know how I got to the bathroom, did I use a cane or my walker?  I don’t even know now…too long ago.  I took my breakthrough pain medicine.  I got Ben-gay and rubbed it on my knee.  I didn’t know what else to do so I got a heating pad and put on my knee.  That probably was not the right thing to do, but no damage done. At first I thought it might help some, but really it did not.  I lay and prayed for God to take the pain.  It hurt so bad. I elevated my right leg.  I drifted off to sleep some.  When I woke about 5AM or maybe later, the pain was bareable.  I had to let the dogs out and I thought a cold pack would be good.  I have never had this kind of pain in my knees.

I had to let the dogs out, so it was at 6AM I think I took my walker and went through the house to let them out. I think I even had to use that seat. I’m so glad I got the walker that I did.  I can’t tell you how scared I was.  I have never been this crippled.  CRIPPLED is what I was, too.  I think this is when I got the ice pack.  So after the dogs did their thing and I had my ice bag filled with ice, I went back to bed.

This is what I think is going on.  I know steroids “hide”  problems.  They also break down your joints.  This time on the steroids I’ve swollen up like never before and my knees have been puffy.  I’ve been walking, having days I’m up doing laundry and housework, going to the store and running lots of errands too long in one day, etc.  I think between the steroids already swelling me up, then covering up any problems, then my knees being extra week due to the week I was on vacation and down a lot, then 2 weeks in the hospital..in bed, then recovering at home the first week or so in bed, then suddenly when I start to do things, I do too much and not even realizing it, well I just think I hurt my knees. OH, and when I fell the other day on my knees and thought all I got was a few rug burns, I think I hurt my knees a bit then.  

So, now that I’m getting off of the steroids, I am only FEELING what is really going on with my knees.  Period.  Break through.  And I think this “break through” will also result in increased strength again.  Of course, I have to get through this thing where I’ve probably overdone my knees a bit. 

But, continuing on in this break through, I can now walk again!  I got up at 7AM and did my breakfast routine.  It was tough.  I had to use that walker the entire time.  I had to sit down in the seat as I made my breakfast.  I could not walk at all on my own and really had a tough time with the walker to a degree as I couldn’t stand 100% of the time.  But I took it easy, I sat on the seat when I had to, and I just went slow. 

I am keeping up on the break through pain medicine somewhat.  I am also taking ibuprofen for inflamation.  And I decided to give my knees a break today so I’m elevating and resting.  I’m walking enough that I’m allowing movement and exercise, just no overdoing. 

I showered.  I took the towels out of the dryer and folded and put them away.  Besides that, I’m resting and relaxing.  I am putting ice on my right knee every so often.  I’m taking care of my right knee.  My left one is not so bad, but my left leg is my weaker leg.

I cannot express the fear this caused this morning.  I could hardly walk using the walker! But it is a wonderful break through that with some rest, medicine, and ice that I have already gained mobility.  I was relieved that I could walk without a cane even!  To go from barely able to walk with the walker to the ability to walk some throughout the house without anything, well, that is a major BREAK THROUGH. 

I’m still trying to figure out the strange new sensations this body of mine is going through.  I go forward a few steps and back one.  These last 5 days it felt like I went back about 5 steps quite honestly.  But I’m encouraged right now.  I feel like I busted through something in getting these steroids out of my system.  EVIL POISON STEROIDS.   

I’m weaning off of them and trying to do it properly (slowly) but may be rushing it some.  Tuesday I began two 4mg Dexamethason a day.  Saturday I started only on one 4mg pill.  By this Wednesday I will not be taking any more steroid pills. 

Due to the steroids and also my little survival game, I’ve been over-eating.  I know the steroids make one crave food, but I just let myself fall into the cravings and then I wallowed in it, enjoying food like there was no tomorrow.  I realize that I was finding emotional comfort in any pleasure as my body has been so uncomfortable with this numbness, weakness, tingling, etc.  I’m OK with that, as I knew I was reacting temporarily, my way of getting through things.  My point here with over-eating is that I have been making myself miserable with stuffing myself…oh but it was good and fun.  I will still continue to enjoy these pleasures, but I will try not to over-do to misery.  I know I will feel better when I’m not eating to such bloatedness.  :)  My stomach area, face, and neck is still very very swollen.  My left ankle and somewhat right are swollen.  Not sure why.  Steroids.  Don’t know.  I wonder when that swelling will go away.  My legs are up, though.

Finally, I need to go to bed earlier and also to pace myself with chores and errands.  Again, the steroids covered up what I was doing to my knees and I’ve allowed myself to get off my good sleep schedule.  So, I must take better care.

I just realized that I have an eye doctor appointment tomorrow.  I plan on making an attempt to go because this doctor wants to monitor my eye pressure from the steroids.  Last I saw him I was off the steroids and OK.  Since I’m currently on them, though weaning off, I will be curious if my pressure is back up.  At one time  I needed medication for the pressure due to the steroids (back when I was previously on the steroids in 2007).  So, given I’ve got the steroid in my system, I know the doctor will do that test.  Also, I’m curious to see when my insurance will cover new glasses.  I ran over my glasses and they’re all scratched and even chipped now.  I need new glasses as soon as insurance will pay, which I think is sometime in July.  I can not wait to get new glasses.

So, that be it.  I know this entry was somewhat disorganized, but I hope it gives a picture of an experience of what steroids can do.  At least I’m assuming much of this is just them. 

I did decrease my Gabapentin dosage for now.  I haven’t told my doctor, but I don’t think it’s a big deal.  I had been on Gabapentin  (neurontin) at 100mg three times a day.  Doctor increased it to 300mg three times a day.  That is going from 300mg a day to 900mg a day.  Given all this steroid and numbness etc., I decided to take it more slowly.  So I’m taking the 300mg pill two times a day for now.  I started doing that about 2 or 3 days ago.  Once I’m off of the steroids and if I’m doing well, I may start the third pill.  The Gabapentin is for neuropathy.  If 900mg gives me more relief than 600mg a day does, sure I want to increase.  I think I just need to take some of my increases and decreases of my medicines a little more slowly.

I’ve also decided to go back to the Dana Farber Cancer Institute Regimen for PN treatment where you take Alpha Lipoic, Acetyl L-Carnitine, B1, B6, B12, Super-B, and so on.  I already take Folic Acid every day.  We’ll see yet if I can get a better handle on this PN.  I keep tucked inside that I’ve heard it can sometimes take up to 2 years for someone to feel better with PN.  I realize that some if not most of my PN may be permanent damage, but we really just do not know. 

Even with this current numbness and weakness I have.  We think it is due from a stroke in my spinal cord at the T-8, that did result from the radiation a few years ago.  It was not direct radiation damage, but rather the stroke occurred from having it.  But the doctors are just putting it all together as best as they can.  I just know I have more than one or two even maybe things going on, and that is not including the MM.

On 6/26 I have lab work done to check my m-spike etc.  I will find out the results on 7/3 when I see my doctor.  I am hoping and praying that my MM numbers stay stable for a while so that I have a break for a while.  I just have too much going on, not only with my body, but with selling my home and deciding where I’m going to live. 

But, I’m a trooper and God is in control.    

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