Cindy's Multiple Myeloma Blog

A weblog

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.

7 Comments to

“Coping With Surviving”

  1. June 25th, 2010 at 5:20 am       John Says:

    Hi Cindy; Glad to hear the “old me” has returned. Thanks for sharing your experience with the pump. It’s a unique piece of hardware. Like you, I’ve not met anyone with MM who has damage to the spinal cord. I do believe, though, that the injury can improve with exercise. So, keep moving!

  2. June 25th, 2010 at 11:33 am       Beth Says:

    Wow, Cindy. What a great post this was. I enjoyed reading it. Thanks for sharing your insight in such a thoughtful way. MM is a different disease for each one of us, it seems. I also don’t think it’s bad if you put your opinions in your blog. It’s all about you, so that helps your personality shine through. Yes, sometimes it causes weird people to create conflict. My gosh, I had one irate reader tell me she was never coming back to my blog once because I put some of my opinion in there! You just have to let it slide off like water off a duck’s back. Hang in there! Beth

  3. June 25th, 2010 at 3:11 pm       Sidney Hider Says:

    Thanks for sharing Cindy. Myeloma is different to us all. Your input helps many of us to realise what other myeloma patient go through. Keep it up. Good health, Sid

  4. August 28th, 2010 at 2:51 am       susie Hemingway Says:

    Lot of very useful information here Cindy, especially for Carers who sometimes find it hard to understand all the ‘goings on’ I am pleased to see that you are making good progress with everything you have to attend to. My very best wishes to you. Take careX

  5. January 7th, 2013 at 5:32 pm       cakassel55 Says:

    Alan, I was on baclofin pills for the spasticity & stiffness in my legs. My myeloma and/or the tumor I had at my T8 did damage & I’ve got lots of nerve damage plus loss of functioning from about the waist down. My quads & calves have lost all muscle…some other muscles are compensating for what they did. But I also have that spasticity & it’s maddening It feels awful & is just irritating. I was up to 80mg of baclofen a day & it wasn’t even making a dent in my spasticity yet I was so zonked out on it. That’s when I got the intrathecal pump implanted. Lioresel is the liquif form of Baclofen and is what is put in my pump. It is under the skin in my stomach area & a tube is wrapped around my waist (under the skin) and right into my spinal cord. I know it sounds gross & there was a time I would never have thought I could have stood this–but when you’re in pain and great discomfort, you do what you got to do. Right? Anyway, I don’t suffer an “withdrawal” basically because I don’t withdraw from it, I suppose. I have a much lower dose now because it goes directly into my spine now. I have my dosage increased each time I have it refilled. I probably should just keep going back until I find the right recipe but I’m tired of appointments & just have in increased every 6 months when I have it refilled. But in answer to your question, when I took Baclofen pills I felt a great fog & drowsiness and it did very little to help me with the rigidity in my legs.

  6. June 1st, 2013 at 5:00 am       Alyce Irwin Says:

    I was diagnosed with metastatic prostate cancer in Dec. of 2010. After 6 mo. of treatment for that disease some with experimental chemo, I was rediagnosed as having multiple myeloma. Have not been able to discern if he bone lesions are from the prostate or multiple myeloma cancer. Had a complete response to the multiple myeloma treatment and am now in remission using Revlimid on a 21 day on 7 day off schedule. Almost every cycle I must wait 7-10 days longer for my blood count to recover. Hormone treatments have kept the prostate cancer in check. Am now trying to decide if I should have prostate surgery as it may be that it is not metastatic and could be operable. No there hasn’t been a day or a waking hour that has past in the last two years that I haven’t thought about my diseases. Should I have had prostate surgery sooner? Did I in appropriately handle some chemicals which caused my multiple myeloma? Is my neuropathy going to subside and will I be able to walk if I must go back on a drug like Velcade? Yes worry is a part of my daily routine, And yet I enjoy being with my spouse who has been extremely supportive. My grandchildren who each spend a week with us in the summer and we get to know them as individuals. My woodturning club from which I learn new techniques each month etc. etc. etc. worry is a part of life I guess. I try to focus on only those things I can affect, and then act rather than worry.

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Hello! I started this Blog October 13, 2007. At that time I was 52 years old. I am the mother of two wonderful grown sons, both married to wonderful girls. I have three grandsons (as of June 15, 2011).

I was diagnosed with Multiple Myeloma Igg October 2005. I was 50 years old. I jogged three miles 3-to-5 times a week and worked out. I was in very good shape.

Before MM, I lived on 17 acres and had 4 horses, 4 dogs, 4 cats, plus barn cats. I completed my MBA in 2002.

I worked for Sprint for 17.5 years before I got sick, was diagnosed with Multiple Myeloma (MM), and had to go on disability. I was first put on oral treatment of Thalidomide/Dexamethasone from October 2005 to March 2006. In April 2006 I had an autogolous stem cell transplant (SCT), but unfortunately it did not produce a remission. I was then put on Revlimid/Dexamethasone and I responded very well to it (8/06 – 10/07). In December 2005 I had 10 radiation treatments to a tumor at my T8. In March 2006 I had kyphoplasty done at the T8.

If you are a fellow MMr, I hope this blog is helpful to you. Actually, I probably have you more in mind than family or friends. It helps me to read the blogs or talk to fellow MMr’s and compare my symptoms or feelings to theirs. Sometimes we’re similar and often not so alike, but it still helps. We’re not in this alone!

I have a strong faith so God gives me strength, courage, and contentment.

Below is a picture of my boys and me in November 2005, just about one month after I was diagnosed with Multiple Myeloma (MM).

Boys & Me November 2005