Cindy's Multiple Myeloma Blog

A weblog

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…)

30 Comments to

“March 2011 – I’m Still Here”

  1. March 14th, 2011 at 5:59 am       John Says:

    Hi Cindy; It is good to hear from you. I’m sorry to learn you must deal with constant nerve pain. If you recall, I have some experience with SCIs. There is a website where care issues are routinely discussed. Perhaps you can find some support and answers at Congratulations on your grandchildren!

  2. March 14th, 2011 at 7:47 am       Sandy Banks Says:

    It was good to read that you are managing your MM and enduring and that the spinal issue got some relief from the pump. No one wants to live with a chronic illness, but you clearly want to live, and you are lucky to have family who want to spend time with you. Take care.

  3. April 12th, 2011 at 1:44 am       Brenda Says:

    Hi, I, too, am going down the MM road. I was dx last November 2010 and since have been in the hospital a couple times for a fever from ? infection. I was just in this past March and had pneumonia (not severe) my lung at the top of collapsed and there is a spot there that I go in for a procedure with lung specialist this month to see what that is and what can be done about the collapsed lung. I have had a couple things since this started last Nov that were unusual but able to be treated. Although I have to have tests periodically to see if it has returned. I have also had Sarcoidosis of the bone marrow and liver which makes for a huge spleen and liver. It also makes all my blood work go down to almost nothing. Creating a bigger issue with the MM as I cannot have chemo although I am and have been taking Revilimid. My IgG levels have went from 4500+ down to 2400+ so that part has gotten better but the pain is terrible as you say. I also live alone and have issues with driving at times so my kids/grkids/friend drives me during this time. I have just started driving from the March episode. It feels good to drive but scarey for me as it seems I have a hard time focusing. Remembering is another avenue that makes things more difficult as well. I am tired alot and get tired easier. Ironically, my best friend’s husband was dx with MM too within a week or two of my dx. But he has things worse than I do and we have different things happening. I didn’t put a website in there as it is not a medical one. I have several although one is pixs and a few stories of family. The rest are on genealogy. I spend mucho time on the computer which some people don’t like to see but I do what I can to keep myself or should say my mind… occupied. I do not like being without a significant other during this as I would like the comfort I would get from not being alone. I realize I have rambled a bit but this is some of my thoughts at this time. Some I have not even talked about before. Thanks for listening, Brenda

  4. April 12th, 2011 at 1:46 am       Brenda Says:

    whoops… have sarcoidosis not had…….. it has no cure either. I normally get things that come and stay not things that come and go such as a cold or flu etc. OH.. my blood pressure is now normal and have went off 4 meds for it since I have been on the Revlimid. Only med difference so it has to be that. Again, thanks Brenda

  5. April 18th, 2011 at 8:53 pm       cakassel55 Says:

    Brenda, Thanks for your comments. I’m sorry you’re going through this “stuff” alone, too. That’s why it helps to read the blogs of others, sometimes. At least we know we’re not the only ones. We can find strength in each other’s stories…and maybe even learn a few things! Best to you…and feel free to “ramble” anytime. I’m a rambler, too.

  6. April 19th, 2011 at 5:17 am       Barbara Says:

    Hello Cindy, I’m glad you didn’t delete this blog, as I have myelofibrosis, and I have found very little information or support on this illness. It’s always helpful to get information from others, to make comparisons. My oncologist put me on Revlimid almost a year ago. I have had the same side affects, and often wondered if I should quit the medication. He started me off with 10mg. but I was not able to function at all. I was exhausted and often so dizzy I had to sit down. So the doctor cut it down to 5mg. informing me that often the lower dosage works slower, but just as well? So far my spleen has not shrunk. My concern is, if I don’t take the revlimid, what else can I take?

  7. April 21st, 2011 at 6:04 pm       cakassel55 Says:

    Thank you, Barbara. I agree with you that it is very helpful to read the experiences of others. I have learned much from others’ blogs as well as gained comfort and inspiration that I’m not the only one dealing with challenges that sometimes, almost get the best of me. But after reading the thoughts or experiences of another with similar plights as mine, I feel hopeful and encouraged. So–thank you. Regarding your lower dose of Revlimid–I hope it works out. My situation turned out NOT being the Revlimid so much as the effects I was feeling were from my spinal cord damage—causing nerve pain etc. I don’t recall all that I was going through now–isn’t that strange? But, I imagine the steroids and Revlimid were causing me some aggravation. I think my biggest problem at the time, however, was my spinal cord damage. The sensations were (and still are) awful from my spinal cord damage.

  8. May 9th, 2011 at 4:15 pm       hanh lai Says:

    thank you so much for sharing your experience. Please kêep us update on what’s going on with you. All the best God bless you and kêep you in his Almighty arms.

  9. May 9th, 2011 at 4:16 pm       hanh lai Says:

    thank you

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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