Cindy's Multiple Myeloma Blog

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Not Time to Throw In The Towel

May15

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…)

5 Comments to

“Not Time to Throw In The Towel”

  1. May 17th, 2010 at 2:14 am       shelia Says:

    just wanted you to always know how much i love you and i’m praying for you :)


  2. May 31st, 2012 at 12:36 pm       Teri Says:

    Thank you so much for sharing this information. I found out 15 March 2012 that I have MM and I started chemo the next week. I am hopeful and I have faith in our Lord Jesus! I will go for stem cell harvest end of July after my 4th chemo cycle. Probable immediate transplant. I am trusting God for a long remission. I don’t google too often this information but, somehow I was lead to your blog and I really enjoyed all of your information and experiences. I hope you are well! thank you, Teri


  3. May 31st, 2012 at 12:59 pm       cakassel55 Says:

    Teri, Thanks so much for your kind comments. I’m sorry you’ve become part of the MM-community, but it sounds to me like your faith will give you the strength and courage to get through it. God is using us, I have no doubt. Be encouraged that there has been great strides in the treatment of MM. I’ll remember you in prayer for healing and endurance. God Bless you, Teri.


  4. October 7th, 2013 at 10:20 am       sue casper Says:

    I Was Diagnosed Dec 2011 with MM Finding It harder to Move Around ,,,my Back and Hips are what hurts me … finding it more difficult to move …and especially when I Sit for a while


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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