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!

Lack of Water Causes Patients to Drink from Vases

What a sad and alarming situation in this UK Hospital. According to this LINK, “Donald Berwick, director of the Centers for Medicare and Medicaid Services, has claimed a love affair with Britain‘s NHS and it’s government-run program. His critics say his “love” and approach will eventually lead to the cost-cutting dilemma patients such as Baily’s mother have experienced first-hand.” – – Well, after you read the article below…you’ll know what happened to Bailey’s mother. When I see something like this in the NHS system, I can’t help but recall that diarist on this site who dedicated an entry to dogging me and those of us in the U.S. who favor a private health care system. God help us if our health care system continues down the path of being handled by our government. When you have overworked and disenchanted workers in a tax-funded system, this is what it always turns into…

Bella Bailey (left) died at scandal-hit Stafford Hospital after being admitted with an enlarged hiatus hernia

Grieving: Julie Bailey, pictured with others who have lost relatives at Stafford Hospital, told the inquiry patients were left without water at night and were left 'screaming' out in pain on chaotic and under-staffed wards

Patients at scandal-hit hospital ‘forced to drink from vases after being left on ward without water’
By Daily Mail Reporter
Last updated at 6:34 PM on 23rd November 2010

Thirsty patients were forced to drink from vases of flowers after they were left on a ward without water, an inquiry heard today.

Campaigner Julie Bailey, whose mother Bella died at the scandal-hit Stafford Hospital, said patients were left ‘screaming’ out in pain on chaotic and under-staffed wards.

She said that when she raised the issue of lack of water on the wards with the nurses, she was told they could not leave drinks out for patients during the night because of ‘health and safety’.

Grieving: Julie Bailey, pictured with others who have lost relatives at Stafford Hospital, told the inquiry patients were left without water at night and were left ‘screaming’ out in pain on chaotic and under-staffed wards Miss Bailey, who slept at her mother’s bedside in the hospital for eight weeks, told the inquiry: ‘They couldn’t find anything else to drink so they were drinking from flower vases.

‘I saw that myself on several occasions, it wasn’t just one occasion.

‘There were just no fluids available for patients.’
Miss Bailey also told how her 86-year-old mother once collapsed on a ward after being left without her oxygen supply.

The grieving daughter set up the campaign group Cure The NHS after the death of her mother at Stafford Hospital, which has been heavily criticised for putting targets and cost-cutting ahead of patient welfare.
It has been claimed that hundreds of patients died at the hospital, run by Mid Staffordshire NHS Foundation Trust, as a result of sub-standard treatment.

Following the death of her mother in 2007, Miss Bailey lobbied for an open investigation into how appalling standards of care were allowed to persist.

A public inquiry into the care provided by the trust between 2005 and 2009 was launched earlier this month.

Bella Bailey (left) died at scandal-hit Stafford Hospital after being admitted with an enlarged hiatus hernia
Today Miss Bailey told inquiry chairman Robert Francis QC that her mother collapsed on Ward 11 of the hospital after being left in a chair with no oxygen supply because there were no nurses available to reconnect the canister.

Miss Bailey said the pensioner, who had a hiatus hernia and suffered from breathing difficulties, had left the ward to undergo an endoscopy and was placed in a chair upon her return by a hospital porter.

She said her niece, who had been visiting, was told repeatedly that a nurse would reconnect the oxygen supply, but after 45 minutes no nurse had arrived and her mother collapsed.

Miss Bailey said: ‘The healthcare assistant kept saying, “the nurse will be with you in a minute, the nurse will be with you in a minute” but she never came.
‘So mum collapsed and my niece telephoned me.’
She added: ‘I believe that if my niece hadn’t gone in to see my mum at that particular time when she collapsed then she would have died there that day. I am convinced of it.

‘After that I decided that mum would never be in that hospital alone and that is what we did.’

Describing the ward, Miss Bailey said: ‘It was absolute chaos. There were people screaming out, shouting “nurse, nurse”. It was just bedlam.

‘There were just relatives waiting all the way down the corridor which I later learned was people, relatives, coming in for visitor hours and then waiting to talk to staff.

‘It was just like clutter all the way down and people shouting out.

‘It was just, it appeared to be, utter chaos on the ward.’

Read more:

NOTE: It’s always interesting to check the site & view readers’ comments. Just sayin’….

Pain in the Gas

Gas is the biggest pain in the —gut. When my spinal cord first started atrophying, I began building up gas. I just knew I had a tumor in my abdomen. It turned out to be – gas. That was over two years ago. I even went to the emergency room one time. But this was before I knew what was going on. What a strange time that was for me.

When I was first diagnosed with Myeloma, I was too busy worrying about my finances that I had very little time to worry about the cancer. By the time I got my financial situation pretty much squared away, I have been so fixated on the pain and discomfort this spinal cord damage causes that I rarely think about my Myeloma.

I’ve yet to figure out whether that is a good thing or not.

Bottomline, I must be doing good because at my six month teeth cleaning, my dental hygenist said that she thought I was getting around & looked better than ever. If you’d ask me, I’d say I was in more discomfort and pain and was having a little more difficulty getting around. My spirits seem to be Okay, though. God, wonderful children, family, and Sisters-in-Christ do wonders.

I’ve not changed my sleeping, eating, or activity patterns, so I don’t understand why I seem to have more pressure down there, but I do. I’m fairly sure it’s gas. I know, I know, you’d think I would know whether it’s gas or not. But I don’t. This “gas build-up” doesn’t really escape all that obviously. The obvious, you’d think, would be that I would “pass gas”, but I don’t…really…at least to my knowledge. Put it this way, the pressure doesn’t match what output, if any. (That’s about as delicate as I can put it.) How humbling it is to come down to this….oh well…such is life.

But why I keep changing my sensations and symptoms when I’ve not changed anything else is mind-boggling. But as I write this I do recall mentioning that thought to my physical therapist. While I do not remember his explanation, I remember that he was not surprised that with a spinal cord injury sensations change.

When I was first diagnosed with Multiple Myeloma, that ugly “cancer” word, I imagined such an evilness inside of me. I was so eager to put more evil (medicine) inside of me to kill off the evil cancer. For a long time – and even still – I did’t recognize my body any longer. It’s no longer “mine”. Cancer does funny things to both our bodies and our minds, I guess.

Probably since I have spinal cord damage, along with the painful sensations, I’m especially prone to feeling like a stranger in this body. When anyone who’s had cancer feels any new sensation in his or her body, I think it’s normal for that person to immediately suspect it’s the “cancer” causing the symptom. So, when I feel more gas or pressure, I think I’m dying. It’s so silly, but I know quite normal.

For around $25 Wal-mart has this little thing with pedals. I’ve used it about four or five times. For about five days in a row I pedaled for 5 minutes and then did some upper body exercises with light weights. The last few days I’ve felt a little yucky, so backed off. It’s that darned GAS!! I know movement produces gas, but this pressure almost prevents me from moving! Persistence….ugh! It was so much better when I could jog. I miss those days so much.

One day I enjoyed my patio for a couple of hours in the morning with a cup of coffee and Scripture & devotional reading. It sure made a difference in my outlook.

I dread the upcoming changes in our Healthcare system. What a time to get sick. This is such an irritation, but I know I’m best to not let it overtake me. Politicians after power and trying to “fundatmentally change” this country irritate me to no end. I must remember that they will someday answer to their evil deeds. Why we couldn’t just fix the problems rather than do a complete overhaul is beyond me. It’s never as it seems. No, if it was for such noble causes, then those designing the changes for us “serfs” would apply the changes to their own healtcare – but no, their care will remain better. They had the chance to receive the same care pushed off on the rest of us peons – but they’d have none of that.

The young and those with no experience with an illness and decent insurance coverage don’t understand; they hear “free” and “for all” and they are sold. While improvements are definitely in order, anyone who’s had private health insurance and experienced a major illness will know they’ve been robbed. For all the propoganda out there about private health insurance, I’ve experienced illnesses that total cost was well over $80,000 and my total cost was well under $300, if that much. Now that I’m forced on Medicare, it is horrible. It pays for less procedures or treatments and for what it does cover, it covers less. Thank God my private insurance (from my employer) is still my secondary insurance and picks up what Medicare doesn’t. Still, since Medicare must be my primary, then I have worse coverage. When I worked, benefits were important to me. I intentionally worked hard for a company where I received decent benefits. Anyone has that choice. And for those who don’t or can’t do that, then there are options and things to do to assist the smaller percentage of people needing help. But to overhaul the entire system rather than fix simply the “broken” piece is ridiculous.

I think Private insurance – competition – makes for better service. What these people are thinking to turn our lives over to a beauracracy – is beyond me. I’ve come across a few people who immigrated here from the U.K., and one said, nearly true to quote, “Whatever you do, DON’T do this Obamacare!” Then she proceeded to tell me about her sister’s care in the U.K. compared to hers here in the U.S. If someone from the U.K. reads this, I’m sorry and I don’t mean to be offensive. I am stating “my” experience, and that’s all I can do.

But I’ve come to the conclusion, I’ve reminded myself anyway, that God is in control. All I can do is vote and share what I know and think with others. Other than that, it’s best to go with the flow of things as best as one can do.

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.

Not Time to Throw In The Towel

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…)

Life Is Such A Journey Every Single Step

Oh boy. I’ve been in one learning experience after the other lately, or so it seems.

First of all, tomorrow I have my second baclofen pump refill and then after that appointment I have my three month check up with my oncologist. I am anxious to know the results of my labwork, to see whether my MM is starting to stir. As sad and sick as this sounds, there was a time I truly wished it would just stir up and I could pass on and simply go on to see Jesus. Seriously. In a slight way, I still hope that, only I’m sort of fearful about the dying process…like will I have a hard time breathing for a long time. That panics me a bit, maybe because there are times I feel a bit stuffy or short of breath.

I think this nerve pain from my spinal cord damage plays the biggest part with my discomfort and perhaps my lack of a will to fight that hard. Side effects from tough medications are so hard to cope with at best, so with this difficulty walking and the sensations…I’m just not sure I can handle treatment side effects on top of it. Ugh…

So, tomorrow will be telling. A part of me wants a little more time yet. Another part of me wants to just get it over with. I hope if I am to die of this beastly disease, I hope it goes fast. I hope the pain killers are strong. I’m a chicken I suppose. Again, I think this discomfort and pain I have with the spinal cord has just done me in.

Anyway, there’s also Xray results tomorrow. You know what it’s like…it’s that “hump” you need to get over until the next labwork time.

This time when I get my pump refilled, Susan (the assistant) noted that they’ll refill with a high concentration of the medicine. That way I will be able to go longer between refills. I think I had it refilled only 3 months ago or so…I’ll have to check.

Something seems to be happening, though. I’m really tired and I’m just having a harder time with the things I have a hard time with…due to that darn old spinal cord damage: walking, going to the bathroom. The burning and miscellaneous cramps and spasms has intensified, too.

But ya know, if my labwork is OK, then perhaps when you have nerve and spinal damage, this is just the stuff that must be dealt with.

On another note, I’ve been a bit touchy or short at the trigger lately. Perhaps that isn’t quite the truth because I haven’t felt short with family or friends one bit. But of course we all get along very well. I’ve just had little patience or compassion even in a few instances I’ve found myself in, let’s say in the past five or six months. I know my physical pain keeps me on edge a bit. Then, I do think the undercurrent in America is troubling to me. And ya know, this is silly of ME to let this stuff get to me…especially in the way I’ve let it. My gosh, my FAITH in God alone should rise above these issues with God’s people. Wake up, Cindy!! (Yes..this is when I’m not only talking to myself..but I’m writing to myself aren’t I? Don’t call the men in white coats just yet…please let me finish.)

Anyway, I think I need to get a handle on some of my emotions. My first thought is to go to God..and yes, that is what I will and should do. I’ve not acted like a Christ-follower at all. In many ways and many times, I’m ashamed. But I think I’m realizing that one gets quite peculiar when he or she lives alone. It’s wise to get out with people. I’ve tried to attend a few bible studies, but as of late I’ve skipped them because I just don’t feel good or comfortable being away from home (and my own bathroom…if you get my drift.)

My biggest issue might not be my MM markers, but it might just be my current disposition. I need to get happy; I need to have a happy-talk with myself. I don’t want to be grouchy anymore. Maybe I let hurt feelings from that one lady go astray.

No wonder I use to jog so much. I needed to release so much energy. I thought about that today. I could just feel that energy that usually led me to run. Running and jogging or even long, brisk walks are wonderful for not only the figure, but also the spirit.