Cindy's Multiple Myeloma Blog

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First Post in 2012


I don’t like that I’m so inconsistent in my blogging here. My intentions were good when I created this blog. They remained good throughout the years even. But I just can’t seem to get to it on THIS blog.

I started out with three blogs (on three different locations). My purpose for each blog was not clear…to me. I thought I’d had a plan in my mind, but I really didn’t. I’d hoped that in time it’d just work out and I’d figure it out. It hasn’t happened. Yet.

What mainly keeps me linked to this blog is that every once in a while I receive comments that touch my heart, inspire me, or plain old get my attention. Last November I made friends with a wonderful lady who had commented. We send emails back-and-forth periodically (she’s better at it than me). (NOTE TO SELF: I need to not only write her, but get pictures together and send her a package. Maybe I can accomplish this by July.)

I also receive a load of spam associated with it. Comments do not show unless I approve them. There are options for the comments to approve, trash, or assign as spam. For some reason, I suddenly started receiving lots of spam comments. Over the years I’d accumulated over 1500 spammed comments. For some reason I deleted them. I think I opened the gates for those spammers to spam me again. Perhaps in time the spam will once again slow down…once I respam the spammers. *sigh* I don’t even understand what the purpose is for spammers, but they must be really sorry people/groups.

Anyway — here is my first offical post for 2012. Thus far my MM is remaining dormant. I am not taking Revlimid or any other treatment for it. As I explained in previous posts, my doctor told me that the current regimen is to place MM patients in partial remissions as I am in, on a maintenance dosage. It’d probably be Revlimid and I don’t know if it’d include a steroid or anything else. Since I’ve maintained very well without it for over four years, he’s leaving well enough alone.

Again, as I’ve stated in previous posts, I do have spinal cord damage and have major issues with it. The tumor I’d had at my T8 caused my spinal cord to atrophy. I don’t function well from about the waist on down. That includes walking and even moving my legs and feet, let alone eliminating (urinating and bowel functioning). With not functioning well comes extreme discomfort and pain. There’s a difference between the two and one is not any easier to cope with than the other. That might be a good topic for another entry in that maybe I can reach another individual dealing with the same thing.

While frankly I hate having to deal with this spinal cord damage because of the pain and discomfort, I think just as challenging for me is that I do not know of one other individual in the same predicament as me: MM’r in partial remission & doing fairly good but has spinal cord damage with similar effects as me. As weird as it sounds, I envy women who get breast cancer as opposed to this. They at least have common issues and can bond. They can relate with what the other women are experiencing. Even other people with MM seem to have much in common. At least it seems that way to me. I’ve not come across another individual who got MM, went into a partial remission and doing relatively well considering the MM progression–but then have to deal with the crippling & demobilizing effects of damage to the spine. My spinal cord damage does seem to be getting worse, too, which is a little alarming to me. I get around, drive to the store and to most doctor appointments, and such – but it is difficult. And it’s getting more difficult. But I still can do it. It would be so helpful to talk to another in the same predicament.

I’ve checked out support groups, asked the nurse practitioners, doctors, and other medical personnel I come in contact with if they knew of one, but to no success. I haven’t tried in a while, so it may be time to search some more.

I do belong to a MM support group and I highly recommend anyone with MM to find one. The one in my area is a great group. They have bbq’s and special meetings throughout the year and are supportive of each other. Over the years I’ve lost contact with them. It’s weird I say this as I don’t attend the meetings – but I am on their mailing list. It’s like I’m a lurker…lol. They’ve just started sending out meeting minutes. I had attended only a few meetings at the start but discontinued when I started having problems getting around. They are about an hour’s drive away and in the depths of the city. Last I attended they are on an upper floor but I do recall there is an elevator. I’m not sure I have the physical strength to first make the drive, then make the walk to the meeting room, then have the stamina to endure the meeting and make it back home. This is something I should reconsider. Perhaps during the nice summer weather I can try to attend a meeting and get reacquainted. If there is another in my personal predicament, by being an active participant in the group would be a way meet them.

I need to try to muster the courage and the strength to perhaps give one of those meetings a try. But I also must have the wisdom not to bite off more than I can chew. As I type this I know that it’s not feasible for me to drive that far to a meeting – as good as it would be for me. I will still ponder it to make sure it absolutely is not feasible…that I’m not wimping out. Sometimes I get myself in trouble when I’m afraid I’m being a wimp and I get myself out on a limb I have no business being on.

This post is disorganized. There’s really no central theme or point in it, is there? Well, I guess I did touch base.

I plan on writing again, perhaps one entry to focus on just where I am in my mobility or lack of. It will either be helpful to another with similar symptoms OR I may meet someone with whom we can share our ideas and what works for us.

Also, I will post pics of my patio. As I’d mentioned in an earlier post, I planned on enjoying my patio this summer. I’ve been sensing that I am slowly getting worse in this spinal cord damage. I don’t even want to admit it, but I suspect I will eventually be wheelchair bound. *sigh* In the meantime, I am going to do as much as I can to enjoy what independence I have left. That stated, I planted lots of flowers and veggie stuff. My patio is full of various potted plants. I got that new umbrella I needed. I love it. In another post I will not only describe my patio but I hope to post pictures of it. But I will inform that I have four different tomato plants (all with tomatoes on them already), four green pepper plants (one with two nice sized peppers already!), herbs of thyme, rosemary, cilantro, & parsley, and spinach. Then I have violas, impatients, gerbara daisies, another kind of purplish-white daisy, and some other lovely flowers that I forgot the name. I’ll list all that in the post.

Until next entry….hopefully in a timely manner…God bless!

13 Comments to

“First Post in 2012”

  1. June 1st, 2012 at 7:12 am       Stephen Says:

    Cindy, Your feelings and questions about your particular style of MM are not just valid, but more common than you may think and a benefit for all of us in this fight. It’s good to have your unique voice expressed through your blog, sharing ideas and thoughts common to each of us in one way or another. I, for one, think the frequency of your contribution is entirely up to your need to discuss or question treatments, symptoms, and support, or to just rant about the difficulties faced dealing with MM. Selfishly, we who benefit from reading others’ posts want more, but the value is not determined by frequency. You describe well the feeling of ‘waiting for the other shoe to drop’, (as my Nurse Practitioner describes the state of mind of MM patients), and how this disease seems to steal little pieces of ones capacities over time. Support becomes critical and, optimally, the support of people who share this disease or the Care Givers of, who understand the strange, convoluted symptoms, pain and confusion that accompanies MM. Here in Boston, the Dana Farber has put together an educational program offering one day seminars, I think quarterly, where top researchers and clinical oncology Doctors and Nurses present and answer questions. I attended the most recent and was surprised at how much I took from the presentations, the follow up questions and the discussion with fellow patients at my table. I apologize for taking up so much space here, but you struck a chord. I share some of your concerns. I am finding support value in here, in the many frank, unreticent blog posts. The way others make use of, rather, thoroughly live, the moments when they are freed by their own creativity and interests. And, I’m making more of an effort find a comfortable support group through resources made available b the Dana Farber. Thanks for your post.

  2. June 1st, 2012 at 11:59 am       cakassel55 Says:

    Stephen, I appreciate your comments and please don’t apologize for the space–take all you want! You actually gave me encouragement & support, so well-received. Sometimes it’s these small communications that get us through, and the knowing that we’re not in this alone. Thank you, Stephen.

  3. June 3rd, 2012 at 9:01 pm       Sandy Banks Says:

    I am a part-time caregiver to a relative with MM, but I stay in touch with some people through their blogs and keep informed about this disease. THere is a really good FB group for MM and you would be very welcome there… Hope this is helpful info for you…

  4. June 5th, 2012 at 6:52 pm       Callie Gilberti Says:

    Hi- I went on web sites tonight because my spouse has had MM for a decade; he is 66 years young. After years of Zometa, successful stem cell transplant at Dana Farber, thalidimide, revlimid, velcade, cytozen, radiation, etc. he has become wheel chair bound. At the moment we are trying to find pain relief for his neuropathy, ruptured discs and obvious bone pain. Hubby has been in hospice for a month. Hospice was recommended after his 4th hospitalization in two months. We’ve just begun the transition from morphine to methadone. Any thoughts? As a spouse, I am realistic, he is an optimist which has no doubt given him a decade when he was given the original decree — maybe 3-4 years at the most. It is painful for those of us on the sidelines; we don’t want to diminish independence, but want to know what is ahead … down the road. Currently our motto is: “Today is a good day — who knows about tomorrow?” I’d be interested in hearing from anyone who has had to be the support system.

  5. August 20th, 2012 at 1:07 pm       sandy Says:

    Hi. I just found your blog today and found it beneficial to read. My dad was diagnosed with MM 12 years ago and the oncologist thinks he had MM for at least 2 years prior to diagnosis. Dad’s MM was dormant for some time but in July became active. He is being treated with Revliimid now and has experinced terrible night sweats. I was wondering if you had this happen while taking Revlimid. I am a bit concerned about his spine he seems to have alot of pain in the center of his spine we will be visiting the doc on thursday and I intend to address this issue. Please keep posting on your blog hearing others stories about their experience and treatments are valuble to others like myself. My dad’s prognosis as 4 or 5 years and we are blessed to still have him for 14 years.

  6. September 15th, 2012 at 10:28 pm       cakassel55 Says:

    Oh goodness, I don’t think I ever responded to Sandy…& just received a question from Alan. I’ll post a brief response here but probably send an email response, also. I don’t know if people return to these blogs where they leave questions – and see the responses. Maybe they do…but unless they bookmark the blog & return to the entry…they don’t hear anything. Sandy–I did experience night sweats–but I believe it was the treatment (Revlimid/Dex) putting me into early menapause. At least that’s what I was told. But if your dad is getting night sweats..perhaps that is a side effect of the Revlimid. But…I did it with the Thalidomide, too. I think both those drugs do give you the night sweats & perhaps with women, it does push you through the change as well. Did you check the information sheet of Revlimid? Or look it up…or best yet, call the nurse you probably have to talk to each month you get it refilled. At the time I was on Revlimid, I had to talk to a nurse each month..I forget where from but I believe the maker of Revlimid…it’s been long enough I’ve forgotten. Sorry I’m not much more help than that.

  7. September 15th, 2012 at 10:44 pm       cakassel55 Says:

    Alan– I can tell you about my experience & what my doctor told me. Please do remember that we’re all different — & MY experience is different than anyone I’ve met yet–so I don’t want you getting scared when you compare yourself to me! ;) About your pain…it could be the remnants of your MM. I say that only because I asked my doctor the same question. But I don’t have “back pain” that is all consuming like you say yours is…so it may be different circumstances. What happens with me is that I have inconsistent pain in my back. Sometimes I will have pretty intense pain & then other times it’s not so bad. (It may not seem so bad compared to the “other kind of pain” I experience.) My doctor said that when I first came down with MM, it was aggressive & probably did a number on my spine. So–best way to put it is that the current pain is probably ‘remnants’ from the initial damage. Since your MM numbers are down & I assume your being seen regularly by an oncologist monitoring your status…perhaps your pain is a combination of ‘remnants’ & then also could be just normal aging. (I hate it when people tell me that..but it is something to consider. Prior to MM, I never had any complaints as far as back trouble or body aches. Go figure.) One avenue you can look into, however, which I would highly suggest, is to see a Pain Management doctor. I live outside Kansas City, Mo & one of our hospitals has a WONDERFUL pain management group…with one doctor a particularly good doctor. He’s excellent at deciding a “recipe” for a patient. If your pain is really bad & interfering with your quality of life–& pain meds are not the answer, I’d see if a “pain pump” (a.k.a. intrathecal pump) is a possibility. If pain meds work, that is best. But if they just drug you out and/or don’t relieve the pain, then the pump is wonderful. In order to relieve pain, pills must work through your brain & then to the place where the pain really is. It makes you tired, druggy, & you usually need more because of the way it works. (That doesn’t sound very scientific..but it’s the best I can do right now.) I did NOT like the sounds of the pump at first…but once I got hard-up enough to try it, it makes a 100% difference. My pump is for the spasticity in my legs, not so much for pain…but it is also designed for pain. I think I have an entry about it on here..but it’s implanted in your stomach area…under the skin…& a tube goes around your side & straight into your spinal cord. I know that sounds gross–believe me–I’m a woos about this stuff..but it IS DOABLE! The pump is programmed to disperse medicine directly to where the pain is. You won’t have the side effects of what meds do to your brain (foggy brain), fatigue, etc). I have mine refilled every 6 months. You can have an active life, etc with it. I mean, there is something the size of a hockey puc under your skin, but I bend over, can lay on my stomach, & so on. The info on it showed people snow skiing with one. Anyway…that’s the best I can come up with. Hope it helps. I know this is long…but I’m not going to try to redo this…too tired. :) Good luck. (I may send you an email separately…but probably not tonight.)

  8. September 21st, 2012 at 12:27 am       cakassel55 Says:

    Thanks, Alan!

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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