March 2011 – I’m Still Here

My goodness it’s been a while since I’ve updated in this blog. Sometimes I think I should delete it, as I’m not faithful to it. I’m sort of a nut, as I have at least three different blogs! I created each blog for a different purpose as well as audience. That’s plain stupid.

This blog was more for sharing my experience with others and hopefully helping others. My journey took so many strange turns. I guess if I use President Obama’s [irritating] analogy about driving a car, I’d say I ended up in a ditch myself! Afterall, I am a Republican. LOL [He’s such a divisive President, but this blog isn’t for my political leanings, so I’ll stop right there!]

What prompted me to write tonight is I received a very nice comment from a November 2007 entry! Wow. That was a long time ago. That’s back when I still had hope of getting back to normal, or at least a whole different kind of “normal” than what my “new normal” ended up being. That term ‘new normal’ sure turns out to sound obnoxious to me now!

For a refresher in case anyone has returned to this blog and forgotten my story or if you’re “new”, I was diagnosed with Multiple Myeloma IGG in October 2005. I was 50 years old. From the day I first got sick, October 4, 2005, I was never well enough to return to work! I had a stem cell transplant (April 2006) which did not provide for any remission whatsoever for me. I was on Revlimid/Dexamthesone from 8/06 – 10/07 which was 16 cycles I believe. That regimen gave me a very good partial remission.

But my problem is spinal cord damage (atrophy) at my T8. In December 2005 it was discovered I had a tumor at my T8, so I had radiation and kyphoplasty. Between the damage from the MM/tumor, then the radiation, and later the kyphoplasty, my spinal cord was damaged at that little spot.

When I read my posts back during October and November 2007 and later, it is unsettling a little for me to read how I describe my sensations. No wonder I always felt different than everyone else. I was different! I was thinking those sensations were side effects from Revlimid, the steroids, or some other medication. It never crossed my mind the possibility of spinal cord atrophy.

You would be surprised the progression of symptoms when your spinal cord is messed up and giving wrong messages to your brain. I am nearly crippled with the weakness and pain in my feet and legs. My legs have what they call “tone” which is the same as rigidity or spasticity. They don’t bend easily or at all. I think people with cerebral palsy has similar symptoms. I used to take Baclofen (pill) for the spasticity, but it wasn’t doing the job and practically knocked me out. I now have a Baclofen pump (Intrathecal pump) that holds medicine and is connected directly into my spinal cord. That sounds totally gross doesn’t it? To think that I was one who was scared of needles and now I walk around with this pump inside my stomach that has a tube that runs around my side (underneath the skin) and directly into my spinal column is crazy gross, huh? LOL When I first heard of the possibility of me getting one of these pumps, I freaked out. I said “no way”. I meant it, too. It’s funny what you do when you have to do it. If something is going to help you, you somehow are able to handle it. It’s really nothing now that I’ve adjusted to it. I’m glad it is ‘under’ the skin. I would say it has improved my quality of life 100%. It’s not a cure, but it certainly is a major improvement.

My MM is doing fine. My markers fluctuate, go up and down a little, but they’re within the normal range and don’t require treatment so far. I now see my oncologist every six months. This Wednesday I have Lab work done and will follow-up with the doctor the following week for my six month check-up.

I have to catheter to urinate, which is a pain in the rear really. Just think what it’s like when I go out in public. I have to be sure to carry catheters & all that goes along with being able to catheter myself when I am in a public bathroom. I hate that. I miss the days when going to the bathroom was less complicated. Bowel movements are also an ordeal. I guess whatever damage is done in my spine affects that function to some degree, too. You can google “Neurogenic Bowel” if I remember correctly. There’s a pamphlet in *.pdf format you can download and it gives you ideas of how to cope with this problem. There’s two different kinds of bowel trouble, if I recall, but I couldn’t tell you the term for the other one. A really awesome nurse from KU University who worked in the rehabilitation area sent me a copy of the pamphlet which gave instructions for people with Spinal Cord Injuries (SCI) on how to manage bowel functions. Although it is dated material, it is very helpful. I also found it on the internet.

It’s hard to find support related to SCI’s. No one talks about it and many doctors, nurses, and assistants don’t know enough about it to be of that much help. I mean, WHO talks about what you have to do to go to the bathroom if you’re paralyzed or having those kinds of issues? I haven’t googled that stuff in a while….maybe there’s info out there now.

I think part of my problem is acceptance. I think I’ve accepted this stupid new normal of having issues from spinal cord damage, but in fact I’m still being a bit stubborn about it. But, maybe that’s a good thing. Determination. You need to have a lot of determination to survive chronic illnesses let alone symptoms like paralysis or close to it.

So – I’m basically the same as I was last time I wrote in here. I know there are changes, but nothing major. I live by myself in a retirement-like place. I couldn’t live where there’s steps or had a long way to walk from my car to my home. I am still able to drive, although I don’t go out a lot. My sister often takes me to my doctor appointments, but then I also drive myself to them.

I prefer to stay home for the most part. I’m usually very tired and I just feel more comfortable in my own familiar surroundings with everything I need right here. I do try to force myself to get out amongst people, though. That is very important. I used to go to two different bible studies during the week. Well, I tried–I missed them sometimes, too. I often am too tired to go or I don’t push myself hard enough. Recently, one group rescheduled their study so that it is at the same time as my regular study. so I’m down to only one study group a week. I volunteer to help count my church’s Sunday offerings which is only about once a month. I try to be social and am blessed I have some true friends.

I do experience significant pain and discomfort. It’s really indescribeable. There isn’t much I can do about the pain and discomfort I have. There’s not a medication strong enough to numb the pain/discomfort. In order to numb this pain, I’d have to be put completely out! My feet not only burn 100% of the time, but I have sharp pains and a stretching and pulling sensation in my toes or under my feet. I have similar sensations in my private parts. It’s maddening. But, there is nothing you can do about it; you have to focus on other things in order to cope.

It’s easy to turn within yourself when you get immobile and are in pain, but that is the worse thing you can do. Funny, I KNOW much of what I should and need to do; I can write it out here, but I can’t always DO IT in reality.

I was just thinking about that today. On Sundays my son and daughter-in-law along with their 3 year old son visit me. They come to church with me, we eat lunch together, and then they visit in the afternoon. Today after they left I considered how little interaction I spent with my grandson today. I didn’t feel well and I think I was focusing on that rather than my grandson. I made note to myself that in the future, I’m going to try to focus more on my grandson (rather than my pain) and see if I can conquer this battle. I always hate it when after my grandson leaves, I look back and realize what I missed out on worrying about my discomfort.

Anyway, it’s really “same ole same ole” here. My other son and daughter-in-law are expecting their second son in June. Their first son will turn two March 15th. Oh my gosh! That’s in just a few days! I am hoping to spend some time with them in June, God-willing. It will have to be a God-thing, as I don’t think I can handle the travel on the airlines by myself. We shall see.

This was more of a refresher/catch-up entry. I hope to do better. (I think I’ve said that before…)

Coping With Surviving

I’ve got to get back into “this” blog. When I so naively started it, I said “this blog” was for sharing my experience with Multiple Myeloma (MM). This blog wasn’t to be about opinions or feelings, but rather just medical news.

Well, that’s still what I want this to be, but pardon me if I throw in an opinion here and there. It goes with the territory sometimes.

My last check-up with my oncologist was great. My numbers remain at the simmering point. They fluctuate. Although my doctor ordered the M-spike test, the lab didn’t do it. However, the other markers were enough to report that I’m running under the radar so far. I need to update the pages with those numbers…..

My Intrathecal Pump is working fine. I’ve had it refilled twice. I believe I now have six months between refills. I had the dosage increased with the refill, but I’m still taking such a minimal amount. I did have a strange experience the day after. At first I thought I’d made a mistake in upping the dosage because the second day I could barely lift my legs to walk. I’d sat several hours on a cushion at the kitchen table, but that shouldn’t have caused my inability to even walk. I stuck it out and within a few days I got nearly back to normal. That was over a month ago and now I am back to normal. I have no idea what it was. I do find that my legs are sometimes still stiff and rigid. They might be increasing in their rigidity, I’m not sure. I wish things would just plateau…but it seems they’re a moving target. The key, I find, is to learn how to go along with the inconsistency. It does’t pay to fight it. I’m better off if I let up a bit, allow for the fluctuations, and learn when to contact a doctor or when to let it go. My primary doctor asked me on a scale of 1 to 10, how has having the Baclofen Pump changed/improved my life. My response was a ’10′. Definitely. Before I was so drugged out on the 80mg of oral Baclofen and my legs were extremely rigid. I was very sleepy and could not adjust. With the pump, the liquid medicine is Lioresal. I can’t remember now what my dosage is, but it’s something like 110mcg….not even 1mg. (If I understand my measurements…1mg = 1000mcg.) Isn’t that amazing?

My biggest problem with coping with cancer is the after affects, and in my case it’s the spinal cord damage and what goes along with it. I’ve explained all that in previous entries.

I’ve always whistled to a different tune. So when I was diagnosed with a “rare cancer” such as MM, it wasn’t that surprising that I’d have to get something rare. But I didn’t stop there. Somehow I’ve ended up with a spinal cord that’s atrophied at the T8, where I’d had a lesion (tumor). I’ve not met or heard of another MM patient having this same experience. I’ve even asked my doctor(s) – nada.

It gets to me sometimes that I haven’t met another person with MM who has had this same experience. I’m expecting too much, I know.

Although I haven’t conquered my bowel function to an acceptable degree, I’m doing OK. I’m just not predictable, comfortable, or regular. Some of it is because I don’t have a routine down as far as sleep or eating. I’m sure it would help if I was more routine. (Make note to myself to work on that.)

In some ways I feel like my feet hurt a little more or that I’m even less steady in my getting around. At home I will move around without a cane sometimes, but only for short distances and where I can touch the wall for balance. I use a cane or walker.

But with all that, at the dentist appointment yesterday, my hygenist (sp) she said I both looked better and got around better. Hey! I’ll take that.

I made it a point to “smile” yesterday. When I walked in the dentist office and the receptionist said ‘hi’ and remembered me, I was approachable. Instead of just responding I was “fine” and sitting down, I interacted with her (Denise). I had to ask her to remind me of her name and proceded to talk to her, ask her questions about her life. She’s got a son with health issues. I felt more like the “old me” than I have in a long, long time and it felt good.

It’s been so long ago since that day when I sat indian-style in my hospital bed with the doctor telling me he thought I might have myeloma. I didn’t even know what myeloma was, much less that it was a cancer. That was way back in October 2005.

Not Time to Throw In The Towel

Good news, I guess, at the doctors the other day. My markers seemed to either stay steady or improve. Although my doctor ordered the m-spike test, the lab missed it. Since the other markers were OK, he’s not worried. As a matter of fact, instead of seeing him in 3 months as usual, I will see him in 4 months.

The xrays my doctor ordered didn’t show any MM activity. So, it continues to simmer, but it’s not erupting thus far.

I had back-to-back appointments. First the pump refill, next the Oncologist. Jessica refilled my Intrathecal Pump this time. Susan ordered the higher concentration of the Lioresal, so this refill should last me 6 months. I asked Jessica to increase my dosage another 10%. Since I’ve had leg spasms and some tone yet, I thought it a good idea.

I was OK until the next day. Wednesday morning I got the refill and adjustment and by Thursday evening, I could hardly stand up, even walk using a walker. It kind of scared me. My legs feel like they each weigh 100 pounds as it is; now they each felt 200 pounds, doubled. I had sat at the kitchen table reading most of the day. When I tried to get up, I thought I wasn’t going to make it to the next room. But somehow I turned the lights out, got ready for bed, and on to bed.

Upon waking Friday morning, I was still in bad shape…but maybe a little better. I wasn’t better off enough to have the nerve to get out and meet my sister for breakfast. I canceled that plus called my friend and canceled her invitation of dinner after church Sunday. I just didn’t know how I was going to get around.

I called the doctor office and left a message for Jessica. She’s out on Friday’s, so I knew I wouldn’t hear from her until Monday. This was not an emergency and certainly not life or death; my legs were just not supporting me. The symptoms I was having sounded like symptoms of too high a dosage. Sometimes when the medicine releases the tone, weakness is exposed. The tone actually provides support in standing.

So, I rested most of the day Friday, but got up every now and then. Gradually my legs improved. They’re still a little wobbly, but I can sometimes use only a cane and even sometimes walk without anything from room to room.

I have no idea what happened. It was strange that it didn’t show up until nearly 24+ hours after the increased dosage. Jessica will call me Monday and I’ll have more information to tell her. If I’m no worse than I am now, and especially if I improve, then I won’t return for an adjustment.

So, no reason to throw in the towel yet. I guess I need to keep up the good fight. Well, I’m glad I don’t have to be preoccuppied with worry over treatment because I have so many books yet to read. I primarily read books on politics and history. I have books on ecology, animals, and a wide variety of topics. And yet…so many goals and interests….drawing, painting, quilting, scrapbooking, piano, Spanish……(jogging & yoga would still be here if I could…)

Life Is Such A Journey Every Single Step

Oh boy. I’ve been in one learning experience after the other lately, or so it seems.

First of all, tomorrow I have my second baclofen pump refill and then after that appointment I have my three month check up with my oncologist. I am anxious to know the results of my labwork, to see whether my MM is starting to stir. As sad and sick as this sounds, there was a time I truly wished it would just stir up and I could pass on and simply go on to see Jesus. Seriously. In a slight way, I still hope that, only I’m sort of fearful about the dying process…like will I have a hard time breathing for a long time. That panics me a bit, maybe because there are times I feel a bit stuffy or short of breath.

I think this nerve pain from my spinal cord damage plays the biggest part with my discomfort and perhaps my lack of a will to fight that hard. Side effects from tough medications are so hard to cope with at best, so with this difficulty walking and the sensations…I’m just not sure I can handle treatment side effects on top of it. Ugh…

So, tomorrow will be telling. A part of me wants a little more time yet. Another part of me wants to just get it over with. I hope if I am to die of this beastly disease, I hope it goes fast. I hope the pain killers are strong. I’m a chicken I suppose. Again, I think this discomfort and pain I have with the spinal cord has just done me in.

Anyway, there’s also Xray results tomorrow. You know what it’s like…it’s that “hump” you need to get over until the next labwork time.

This time when I get my pump refilled, Susan (the assistant) noted that they’ll refill with a high concentration of the medicine. That way I will be able to go longer between refills. I think I had it refilled only 3 months ago or so…I’ll have to check.

Something seems to be happening, though. I’m really tired and I’m just having a harder time with the things I have a hard time with…due to that darn old spinal cord damage: walking, going to the bathroom. The burning and miscellaneous cramps and spasms has intensified, too.

But ya know, if my labwork is OK, then perhaps when you have nerve and spinal damage, this is just the stuff that must be dealt with.

On another note, I’ve been a bit touchy or short at the trigger lately. Perhaps that isn’t quite the truth because I haven’t felt short with family or friends one bit. But of course we all get along very well. I’ve just had little patience or compassion even in a few instances I’ve found myself in, let’s say in the past five or six months. I know my physical pain keeps me on edge a bit. Then, I do think the undercurrent in America is troubling to me. And ya know, this is silly of ME to let this stuff get to me…especially in the way I’ve let it. My gosh, my FAITH in God alone should rise above these issues with God’s people. Wake up, Cindy!! (Yes..this is when I’m not only talking to myself..but I’m writing to myself aren’t I? Don’t call the men in white coats just yet…please let me finish.)

Anyway, I think I need to get a handle on some of my emotions. My first thought is to go to God..and yes, that is what I will and should do. I’ve not acted like a Christ-follower at all. In many ways and many times, I’m ashamed. But I think I’m realizing that one gets quite peculiar when he or she lives alone. It’s wise to get out with people. I’ve tried to attend a few bible studies, but as of late I’ve skipped them because I just don’t feel good or comfortable being away from home (and my own bathroom…if you get my drift.)

My biggest issue might not be my MM markers, but it might just be my current disposition. I need to get happy; I need to have a happy-talk with myself. I don’t want to be grouchy anymore. Maybe I let hurt feelings from that one lady go astray.

No wonder I use to jog so much. I needed to release so much energy. I thought about that today. I could just feel that energy that usually led me to run. Running and jogging or even long, brisk walks are wonderful for not only the figure, but also the spirit.