Cindy’s Multiple Myeloma Blog

I’m struggling with my spinal issues. I’m having a really tough time but that’s how it goes. When you have an illness or disability or both, you’re going to have ups and downs. I know that. It’s kind of like, ‘deal with it.’ OK. I will. I am.

I have been staying in bed nearly all day for at least the past week. Of course the chain reaction is that my legs get weaker and I get more wobbly. It’s time to do some of that reaching deep down inside again. It’s a matter of attitude, but darn it is hard.

For example, just today I didn’t want to move. It’s hard to find a comfortable position, but I was in a fairly good place. If I don’t move, I don’t hurt. It’s sort of like that. But that survivor voice inside of me was telling me that the longer I lay there, the weaker I get. It took that voice a while, and I got up.

I swept the place and steam-cleaned the tile floor, as well as do three loads of laundry. After dark, I walked (using my walker with wheels) to the mailbox. I cooked a chicken breast seasoned with marjoram for dinner. It’s much better to answer that voice.

As I type this I realize that I have not attained my level dosage of Lioresal (liquid Baclofen in my Intrathecal Pump) yet. I was told it could take up to 6 months after the implantation of the pump. I’m just coming up on 4 months. I’ve got time to navigate I guess.

I recall both my Rehabilitation doctor and my Physical Therapist both telling me that with spinal cord/nerve damage, symptoms may continuously vary. (I need to reaffirm I understood that correctly.) That is unsettling for me at times because just when I get to a place where I feel like I can handle it, some function of mine or sensation starts to change. How long will it take me to accept these sensations? I always thought if a person had spinal cord damage, you either had sensation or you didn’t. I never knew there was an inbetween…sort of. The burning of my feet is miner compared to the sensations inside my body. The body is just too fascinating for me at times!

I’m thankful for my good doctors, though. I remember when I was going to a group who were not cutting it for me. I am so thankful that I had the opportunity to find new doctors, and what a grand team I have now! What would I do if I were still being attended by the previous doctors and feeling like I do now?

This cold weather has got to go! I’m blaming my lack of umpf on the cold.

I’ve canceled my PT session this week and the following. I’m taking a break until I get my pump refilled and the medicine dosage increased. Maybe by then our temperatures will rise and I’ll be more eager to cope. I hope I survive my plan.

Oldest son called tonight. He’s going for a second trip to Haiti. He and several other members of his church went to Port of Paix for a week; they returned just last week. Tonight P calls to tell me he returns on March 6. I’m proud of him. He’s my first baby, so I still hold a mother’s worry over him. But he’s working for the Lord, so I know he’s where he should be.

He was quite moved from his last trip. The people who come to Christ are so authentic down there. People with so little yet they are so rich in other ways. My heart aches for them so. I’m afraid if I were well and volunteered for one of these trips, I may not come home. I fall in love with the little children when I look at their smiling faces. The older people are also very moving. I just think they are a very special people.

So many people from here are doing so much for Haiti. We’re always so appreciative of what we have and enjoy helping others.

This son and his wife invites me to live with them. Oh how much joy I’d have to see them every day, especially the grandson Caiden. What a precious baby boy! My daughter-in-law, A, is such a gentle spirit. Her mother and I connect so well. What a blessed thing it would be to live with them.

My dilemma? Leaving son and his family up here and then secondary, changing doctors. I love my entire doctor team, and I have a large one with all that I have going on. However, I’ve heard wonderful things of the hospital in son’s hometown. That is encouraging and may make the move more pliable.

I feel like I need to wait for things to settle down a bit first. There’s such commotion during these times. It’s disheartening for sure. I’m not happy with our goings on…but the best I can do is to pray and to vote.

“Pride is like bad breath: everyone knows you have it but YOU!” [author unknown]

I had to share this. I heard it watching one of those Sunday morning ministers. It was too icy and cold to get out today–for me anyway. The minister was a fairly good speaker. This quote caught my attention. I’m more guilty of it than I realize or care to admit.

Think I’ll go rinse with Listerine now. I’ll work on the Pride-thing, too!

My feet always burn. The last 48 hours I’ve had more difficult moments with them. This isn’t new, to have moments not so bad and then some moments quite bad. I’ve at least come to know that when I’m in the midst of a “quite bad” moment, that the “not so bad” moment is around the corner. At least that’s how it’s been so far.

I made it to PT today by myself, nobody driving Miss Daisy (me). I was walking more stiffly and unbalanced. Woody noticed. I asked him about my feet. I’ve realized that not only do my ankles swell, but my feet swell and my calves are a bit puffy. It seems the lower it gets, the more the puffiness. But, my toes don’t seem to be puffy, else I imagine they’d look like little piglets.

So I asked Woody, my physical therapist, what the swelling consists of and where is it pooling exactly. His answer made sense, but I know I can’t relay it clearly or totally accurately. I’m going to make an attempt, however.

And let me clear something else up before I attempt to repeat what Woody said. I always describe my toes and feet as numb. It is confusing though, because I FEEL everything. As a matter of fact they are very sensitive. If I step on one tiny granule of kitty litter, it hurts very much. Before whatever is going on with my feet occurred, I’d probably barely have felt a granule…NOW it is quite uncomfortable. So, I’ve realized my feet aren’t so much numb as they are maybe having different sensations. I’ve realized that I’m retaining FLUID in my skin or something, and this fluid is irritating my nerves or nerve endings…and THAT is the pain and funky feeling I’m experiencing. I describe it as feeling like my feet are immersed in dry ice.

Woody explained that our bodies have two kinds of *I don’t recall what word he used, but maybe* “muscles” or “controls.” One is voluntary and one is autonic (?). I’m not sure of the word for the involuntary one, I just know it starts with “auto” and ends with “ic”. [I'm going to have to have this explained again.] Anyway, voluntary functions would be like lifting your arm, spitting, things you have CONTROL over. Then the other one, I’ll just call it “autonic” for now, but that is NOT the term, it would be your heart beating, food going through your digestive system, blood pumping throughout your body, and so on: you don’t control it, your body just does it automatically. That is, if everything is functioning normally.

My spinal cord damage, where it’s atrophying from the T8 down is causing some of my autonic functions to not worky properly. That’s probably why I have difficulty having bowel movements. Same with why I have to self-catheter.

I was wondering why I have this fluid and where was it coming from. Woody explained that our blood is pumped, via pressure, from our heart, it goes through capilaries which expell nutrients to our body cells, then it moves on through our veins and back to the heart – just to start all over again. I think I have that in concept correctly. Perhaps MINE, when the blood comes after the capilaries, doesn’t have enough pressure and does not function properly, so there’s pooling of fluid. This is where I’m a little foggy; I don’t know where or what the fluid is exactly. I just understood it to be that the return trip perhaps is where the dilemma is. This pooling of fluid, therefore, is causing swelling and irritating my nerves.

I know I’m not understanding it completely; I’m not using the correct terminology. But I think I have the concept down at least a little bit.

Woody suggested I try to elevate my legs at least a couple of times a day to help relieve the pressure from the swelling. I usually am sitting down, so my legs and feet are lowered and they swell. They’re betting in the morning, but there’s still a little swelling evident. I’ve even put pillows under my feet and a little swelling still remains.

The only time I saw the swelling leave nearly completely was when I was sick with a migraine in bed for nearly 3 days straight. The laying in bed helped but what really helped is that I was not drinking any liquids. I sipped on 12 ounces of 7-up over 2-1/2 days. So I was dehydrated and the swelling went down. I guess I can’t go that far to relieve the swelling!

Anyway, it makes more sense to me now, but it doesn’t help relieve the pain or the swelling. Woody gave me some spare TED socks. He said they may put enough pressure on my ankles and legs to move the fluid on through my system. I washed them and they’re hang drying. I’ll give them a try as soon as I can. They’re long socks, hose like really. They’ve got elastic on the end. They look like they should come way up my thighs. They’re white and ugly, but no one will see them. We’ll see. It may be an adventure. You can be sure I will blog about it! I tell everything!

All-in-all, I did pretty well at PT today, considering I was unbalanced and stiff. Once I get my Pump refilled, I’ll have the doseage increased.

Before I close, I must comment off-topic somewhat. As I’m typing I have the Olympics on TV. They’re featuring this female US skier. Earlier I watched the lugers, which I don’t understand. These sports are so dangerous. With my spinal cord damage, I’m very alert and sensitive to anything that could cause paralysis or damage such as I have. Oh my, for me, it just would not be worth the risk to do such extreme sports. I know you can’t live in a bubble, but I don’t know about this extreme stuff. Still, it’s fun to watch others do it, especially when they are successful!!

Woody said, “If you can move it, you can strengthen it.” We were discussing my leg strength, particularly the muslces used to lift my leg, as in marching. That simple tidbit of information did wonders for my attitude. It gave me more hope.

The best way I can describe the difficulty in using my legs might be to imagine 50 pounds added to just above each knee. Realistically, maybe 30 pounds for me. When laying down, I can lift my legs barely 5 to 6 inches. If I try very hard I can somehow and only sometimes pull my knee up then straighten my leg out, but not very well but very wobbly.

The point here is my legs are quite weak and walking is always a challenge. I can even feel the delay when my brain is sending the messages down to my legs to MOVE. Just to have hope that this can get better is joyful. I didn’t realize it, but I didn’t have a lot of hope. When Woody said that, it was like adding wind to my sails.

It made me think of a friend’s wife. For different reasons she also has spinal cord damage. We go to the same doctors plus she got an Intrathecal pump implanted a few months prior to me. I don’t know her personally but I went to school with her husband and he is the grocery store manager in my town. I don’t think she will ever walk again. At first I thought she’d be able to regain her strength, but now I’m thinking not. I haven’t been to the store at the same as Phil to discuss, but today with Woody, he didn’t come out and tell me what her situation is, but in a round about way he did. I had just told Woody that one day I was a little frustrated and scared at how hard it was to rebuild strength, especially after being sick in bed a few days. I then told him I thought about this lady and how hard it must be for her to try to exercise after being in a wheelchair prior to her pump and not walking. Woody just said that there are some people who have to exercise to just maintain what they do have with the knowledge that they are for sure going to get worse.

Wow.

That broke my heart. First I was inspired to think that I had hope in strengthening my legs because I can move them. Then I felt such compassion for this lady and others who must live without the hope I have.

Something else happened today worth noting, though it’s a little embarrassing. I’m ashamed to admit that I have prayed for death not a few times, but many, many times. I didn’t feel the strength to want to continue physically, emotionally, and a little spiritually. But today I so blantantly hoped to live. This was a first. I found myself hoping for more time. I think I was smiling to myself a little even, I can’t be sure!

I’m turning to God for strength and courage; I’m learning to allow myself to trust in Him and be used. I don’t quite know how to explain it, only that it is a God-thing that is happening to me. He’s giving me the hope and incentive to look at things in a brighter way. Nothing’s changed really. I still hurt so bad and I still have all the physical challenges; I just look forward to tomorrow more than I did. That’s big enough for me.

I read a few of my original entries, back in October 2007. It felt like I was reading about someone else. It’s amazing how you forget things.

First, I was still taking walks for exercise and I was playing with my horse, Stoney. I was complaining about having trouble walking. I complained of pain in every joint. When I read some of those symptoms, I can’t even remember how I was feeling. Much of it doesn’t even sound familiar? That seems strange.

I was on treatment of Revlimid and Dexamethasone from August 2006 through November 2007. I suspect the pain in my joints might have been from either the Revlimid or the Dex, or possibly both? I thought the problem with my legs was from the Dex (steroid) but now I know it was my spinal cord atrophying.

It was a bit haunting to read those entries. I’m not sure why. But it was back when I still had my horses and my pets and I was living in my home on “the farm.” It was 17 acres, but I called it “the farm.” Well, actually it was two pieces of land that were attached. My house was on 12.5 acres and then I had a separate 5 acres. My sister has since purchased the 5 acres, as she lives on another 5 acres attached to it. A family rents my home now until they can buy it.

I talked of juicing. It seemed I was a little more into trying to eat and exercise back then. Things have certainly changed. I miss the animals. I miss the walking, yet I recall I was getting dismayed at the trouble I was having walking. It was very unnerving at first. I mean, when you used to walk around without a second thought, then suddenly you’re having strange sensations and limps; it’s been quite a journey.

I mentioned a friend, Joanne. I met her at a Christian book store. I overheard her talking to an employee of the bookstore about her cancer. My cancer was new enough to me that I walked up to her, feeling like we were in a club, and introduced myself to her, telling her that I had cancer, too! She didn’t take offense or think I was strange at all, but looking back, how silly of me. I realize now that while others thought I was taking “having the cancer” so well, I was probably still fighting the fear and looking for some comfort-level yet. Where else but with others who share the same battle? Anyway, we became friends of a sort and exchanged numbers and emails. Joanne had breast cancer and also had tremendous faith in God. She was very much into holistic treatment. She sent emails to family and friends updating on her own journey. She spoke of not only health but spiritual things. Her writings and faith were so amazing! She had a meeting at her house to share her experiences and knowledge of health issues. She showed us how she grew her own wheat grass. She juiced it and we all had a sip. I loved it. I thought it tasted delicioius. She gave us all literature and information on books and organizations on various health and/or cancer topics.

I don’t recall exactly Joanne’s experience, only that she tried to go as natural as she could. I believe she did have a tumor surgically removed but instead of doing chemo right after, she tried to do things “naturally.” It got worse and she then went one of those “Cancer Centers of America” places. I think that’s the name and I think she went to the one in Arkansas or Oklahoma. I forget which state it’s in..but these are the places advertised where they say they never give up hope on patients plus they treat everything. For example, if you are a Christian, they will include prayer as well as traditional treatment. She was very impressed with them. In summary, Joanne combined traditional with lots of alternative. I think she errored in one way and her husband sort of hinted at it later. She was doing some Chinese herbs and something happened…she ended up dying. Something that the herbs did that her liver ws trying to detox…I don’t recall…but she might have been going to pass anyway and this herb-thing just made it a little more complicated. I don’t really know. Joanne did write a really neat email to the email chain that she hoped she had not led any of us astray. Joanne said that one thing she did learn is that sometimes, no matter what you do, you may not be able to change your outcome. She said it much more eloquently. But she said some people can do all the natural things and still die and someone can handle their cancer with all the traditional treatments and be healed.

There’s no clear answer to what treatment course we should take. I guess we just make the best choice we can with what information we have and with what route we think we can handle. That’s the best any of us can do. The important thing, I think, is to just do your best and don’t second guess. Always look forward because looking back is surely a waste of time. Believe me, because I find myself looking back too much. I’m getting better at NOT doing it.

Actually, now that I’ve read a few entries, I’m realizing that I really have been through a variety of “hells” since then! Wow. I’m not trying to toot any horns here, but I am a little more proud of myself. I have been really feeling like a big old baby and complainer. Now I can cut myself a little more slack. I remember where I’ve come from. Maybe I was trudging forward so hard back then that I didn’t get to appreciate the uphill battle I’ve had. There’s the cancer, there’s getting to and from the appointments alone, there’s financial and insurance stuff, there’s personal issues and fallout with family at times, there’s losses and giving up things that meant much to me, there’s just been a bunch of stuff. I’m at a better place in many ways now than I was back then. Of course, the “unknown” is always the hardest and many things were not known back then. Heck, that’s when I had the Hitler-like female doctor! Ha! Oh my, those were the ‘bad ole days.’

I saw Dr. M yesterday. Remember the days I had the female oncologist who was so rude? I’m so glad I changed doctors. Dr. M is so kind. My numbers are back to where they were in August 2009. My numbers had just lowered on their own since then, so although they’ve gone in the wrong direction, they’re still not too bad. We’ll just watch them. I return in 3 months for lab work. Dr. M ordered complete xrays since it’s been a while since I’ve had them. He said we’ll just check to make sure there’s no small lesions. I’m not worried.

I did tell Dr. M that if my numbers change to where I need treatment, that I was not sure what I could stand. Since treatment usually comes with some kind of side effects, I just am not sure what I can cope with along with the pain I feel with this spinal cord damage. I told him that I may consider just letting it go and keeping me comfortable. He understand how I feel, wanting more quality of life. But for me, it’s more about “physical pain.” I just can’t take any more pain, discomfort, or inability to get around. If I wasn’t dealing with the spinal cord damage, heck, I’d be more into this.

Dr. M told me about his bil who injured his spine and required a catheter. He began getting infections which required hospitalizations. I guess his bil finally got fed up and the last infection just decided to not fight it anymore. They kept him comfortable and he died. Wow! Dr. M said he was horrified at first because, well, he’s a doctor and they fight for us to live! At least they’re supposed to. But Dr. M understands it. I just told Dr. M to promise to keep me comfortable. He said he would, that they’re good at that now days. This all sounds so morbid, but it really wasn’t. We were even cracking jokes. Somehow it was a much more light-hearted yet good conversation yesterday, yet writing it down now sounds morbid and horrible.

Oh well. I just know that I’m doing fine. And when I do start to progress, I may try treatment, but if it hurts or causes me more pain then Dr. M can help and keep me comfortable. It’s not so bad.

We’re so lucky with what they can do now, whether it be treatment, healing, or just being comfortable.

I didn’t go to bible study today because I didn’t feel like getting out in the cold and I was feeling too lazy to get out and around. I don’t know if I regret being lazy or not.

I had a good week last week, having two good sessions with PT, making it to my two different bible study groups, and one day even running several different errands in the one day. When I hurt I cowgirled up. It worked for most of the week.

A migraine got the best of me come Friday. I’ve been in bed two days straight, and finally today, Sunday, I’m vertical. Being off of my feet so fully for two days straight has certainly set me back; I’ve lost some gained strength. Tomorrw I see Susan (nurse prac.) to increase my medicine dosage. I did have PT scheduled for later in the day, but I plan on canceling that appointment. I think given the last few days plus what the increased dose of medicine does, I just won’t have it in me.

The increased dose of medicine exposes weaknesses. The spasticity disguises weakness in that it helps you stand relying on the stiffness rather than muscle. So when the medicine is increased to relieve the stiffness, you’re left with reality. It’s not been a real obvious change, but there’s a slight change. My legs feel heavier for a while, heavier than what they already feel.

When I walk now, normally, it’s as if I have 50 pound weights at just above each knee. My legs feel very heavy. This is because of the muscle I’ve lost due to nerve damage. Other muscles are compensating, but they sure must be wimps because they’re not making it all that easy! Hopefully with continued exercise and PT I can toughen up those wimpy muscles. And, who knows, maybe the damaged nerves in those main muscles will awaken again. I won’t lose hope.

Awwwwww. I was doing so good before this migraine fall. I look forward to having another good week, minus the migraine ending!

That title fits me in two ways.  First, I just can’t find a design on here that I can get comfortable with. I want one that is easy to get to “Site Admin,” is attractive, and easy on the eye or to read. I’m not real happy with this design. So, until I find the right fit, I’ll probably make changes quite often to the design of this blog.

Second, I still can not get comfortable in my body, BUT, the difference is that I am doing better. Yesterday morning I did not want to get up and out of bed to go to physical therapy. Uh-hum…my appointment was at 1:00pm. So YES, that is right, I did not want to get up even that late in the morning! There was an overcast outside, it looked cold and it was supposed to snow or ice!

I was toying with canceling PT when my sister J called to see if I wanted her to drive me to PT. I took her up on her offer. My feet and legs were hurting and not working very well. It was so hard to walk, even with my walker, when I let my dog outside to poddy. But once I got up and around I did better.

Because of my slow start I was fearful I would have a set back at PT. WRONG! I had a great session. My last exercise Woody put a belt around me and he followed behind me as I walked around the clinic without my cane! If I was to fall I don’t see how Woody would have caught me. I did not tell him that, but I would have taken him down with me if I fell. Most of my walk was down halls so I had walls to hang on to if I lost my balance. I did pretty good.

We did two laps. Then once we were back in the exercise room, he had me try to walk fast. That was a bit challenging, but it was interesting to see how well I did. Lastly, he had me walk backwards. I think what stinks about all this is that my grandson walks so much better than I do now!

The swelling in my ankles was the lowest it has been in I don’t know how long. After walking around it swelled up a bit, but not to bad. Even Woody is a little perplexed at my swelling in my ankles. I will ask the Nurse Practitioner about it next Monday when I go back to have my pump medicine adjusted.

Speaking of my pump, I am doing fine. I am now up to 80 mcg per day. Susan thought I may need to get up to about 100 or 120 mcg. That is so strange to think that before the pump I was taking 80,000 mcg’s a day and not having near the success I am now with only 80 mcg’s; it’s because the medicine is going directly into my spinal cord where the problem resides.

Today was a good day as far as my days go! I decided to push myself a bit and go to my Tuesday afternoon bible study (1p-3p). I am so glad I made it. This study is in its 7th week. I have missed the first 6 weeks of the study and have missed it. It was so good to be with these good people – AND it was good to get out.

Better yet, I no more got out and on my way and the sun actually peeked out of the cloulds several times during the day.

My feet burn badly. My calves feel yucky and my ankles are stiff, but it is doable. I’ve got to tell myself it is doable. It is darned hard, but I think that’s how you handle it. And when I decide to do that, it seems to work. I am having longer moments at a time where I don’t “think” of the pain. I know your body adjusts to “new normals.” My body has adjusted to lots of new normals since 10/05.

I don’t know if other people with Multiple Myeloma (MM) ever feel this way, but I often envy some people with other cancers. Notice I said “some” people. I keep seeing these people battling cancer and yet they are doing stuff. They walk and sometimes they even run and hop!! They can function. Even before this spinal injury from the radiation, this MM did something to me. When I first got sick, something happened to my right shoulder and arm and within three days I could not move my arm at all. I had a … gosh I forget what you call it now … but it’s a soft sort of tumor or collection of cells that MM has. The Thalidomide got rid of it for the most part, but I’ve not been the same since. The Stem Cell Transplant (SCT) also affected my joints big time.

It’s frustrating at times but as I’ve said before, I don’t have to look very far around to see people with much heavier loads than mine.

So, while I can not get comfortable in my body I am actually getting better at tolerating it. It just takes effort, motivation, and all that sort of stuff. I noter mentioned his son uses meditation. I think that is worth looking into. One thing at a time, but it’s certainly worth looking into.

Something that’s really bothered me, probably far more than the physical discomfort, is that I’ve felt spiritually uncomfortable for some time now. I have NOT lost my faith. I could not do that. I love Jesus very much and my faith remains strong and true. But it’s been my walk that has been my struggle. It’s been walking my talk and doing as I think my Lord wants me to do – that’s where I’ve felt sadness and failure.

I’ve prayed. Perhaps I could have prayed harder, but I prayed. The good news is that He is answering me. I can’t lose this moment though. I can’t stop hearing His answers.