Cindy’s Multiple Myeloma Blog

A few weeks back I’d read about the drug Avastin, something about its approval maybe being pulled back. It’s a very expensive drug prescribed as a last-ditch effort for breast cancer patients. It’s not a cure, but it provides an extension of life and quality of life in the hope (that America has no shortage of), that a cure might be obtained.

Perhaps I should have written an entry on the Avastin when I first read about it, as my first thoughts was ‘here we go already’. But this columnist wrote a much better article on the topic than I ever could.

Let the death panels commence
Peter Heck – Guest Columnist – 8/30/2010 10:00:00 AM

On Friday, August 7, 2009, Sarah Palin wrote on her Facebook page: “The Democrats promise that a government healthcare system will reduce the cost of healthcare, but [it] will not…it will simply refuse to pay the cost. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide…whether they are worthy of healthcare. Such a system is downright evil.”

The response of Democrats and the media to Palin’s assertion can only be described as outrage. Howard Dean went on ABC and called it “totally erroneous,” concluding, “She just made that up.” Even David Brooks, the closest thing to a conservative the New York Times can bring themselves to hire, proclaimed on Meet the Press, “That’s crazy…the crazies are attacking the plan because it’ll cut off granny, and that – that’s simply not true. That simply is not going to happen.”

And even last week, Newsweek magazine ranked the idea that there would be bureaucratic boards making life-and-death decisions for people as one of the “Dumb Things Americans Believe.”

The only problem for Dean, Brooks, Newsweek and the whole lot is that it now appears that under ObamaCare there are bureaucratic boards making life-and-death decisions for people.

Take the anti-cancer drug Avastin, which was fast-tracked by the FDA years ago. It is primarily used to treat colon cancer, but is also prescribed now to treat nearly 18,000 women a year who are fighting the late stages of breast cancer. While Avastin doesn’t cure the disease, it can and does significantly lengthen and improve the quality of a victim’s last months. Perhaps to be expected, Avastin is also very expensive, costing up to $100,000 a year.

But now suddenly, despite the stringent objections being made by both the Susan G. Komen Foundation and the Ovarian Cancer National Alliance on behalf of patients, the FDA is considering removing Avastin from its approved drug list for breast cancer. Such a move would mean ending its coverage by both Medicare and the government program for low-income women.

ObamaCare proponents say this FDA action has nothing to do with the expensive nature of the drug, but rather about questions over its effectiveness. That’s possible…but there is strong circumstantial evidence to suggest otherwise.

Consider that if the FDA continues to approve Avastin, it puts the ObamaCare system in a very difficult and awkward position: it could either subsidize the expensive drug for low-income women, or refuse to subsidize it.

If it does the former, the government will be shelling out billions of taxpayer dollars a year for a drug that is increasingly popular, but doesn’t cure the disease. That destroys the promise of ObamaCare to lower costs. But if it does the latter, thereby denying treatment to patients that they could have received prior to ObamaCare, they prove Sarah Palin and conservative critics of the plan totally correct on the issue of rationing.

So to avoid this uncomfortable dilemma, Obama’s FDA simply pulls its recommendation of the drug altogether. This may allow ObamaCare’s supporters the chance to temporarily dodge the political fallout of what they’ve foisted on the American people, but it also devastates the families of nearly 18,000 women who will suffer the deadly consequences.

Is this the vaunted “compassion” our president and his allies promised they were delivering to our healthcare system?

ObamaCare has already devolved into the nightmare we should have seen coming from the moment the president told Jane Strum in a town hall meeting that perhaps her 100-year-old mother should have gotten a pain pill instead of a life-saving pacemaker.

The frightening reality is that this controversy over Avastin is only the beginning. This is what our healthcare system is on the verge of becoming under ObamaCare: battles with faceless bureaucracies who make decisions about treatments and drugs looking at financial records and cost-benefit analyses, not people.

Covering the Avastin story in the Washington Post, reporter Rob Stein begins, “Federal regulators are considering taking the highly unusual step of rescinding approval of a drug that patients with advanced breast cancer turn to as a last-ditch hope.” Highly unusual…until now.

Welcome to Obama’s brave new world where “perhaps you’re better off with a pain pill.” I dare say that for those of us with family members or friends who have battled breast cancer, Sarah’s not looking quite so crazy anymore.

Link to Article above: http://www.onenewsnow.com/Perspectives/Default.aspx?id=1141010

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.

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.

Obamacare taking on water
By: Jeffrey H. Anderson
Special to the Examiner
05/28/10 9:34 AM EDT
As they followed one another off the political cliff in voting for the health-care overhaul, Democratic senators and representatives comforted themselves with their own self-created myth that, although ObamaCare was horribly unpopular as a bill, it would prove to be quite fetching as a law. Furthermore, this transformation, this change they could believe in, would take place sooner rather than later — as voters would reward rather than punish them for passing ObamaCare in clear and open defiance of popular will.

In the two months since, President Obama has pulled out all the stops, aggressively trying to sell the overhaul while also rolling out ostensibly popular provisions ahead of schedule. These provisions include a federal mandate that insurers cover all “children” up to the age of 26 on their mom’s and dad’s policies, with costs being borne through somewhat higher premiums for all families; and a tax credit for small businesses, but only — or at least mostly — for very small businesses (those with nine or fewer workers) with very low-paid full-time employees (those averaging less than $25,000 in annual income).

Unfortunately (from the perspective of ObamaCare supporters), a steady stream of revelations of previously undiscovered horrors buried in the bowels of ObamaCare appears to have more than negated any gains that the administration might otherwise have made.

Since passage, reports have revealed that ObamaCare would cost over $1 trillion by any standard, according to the Congressional Budget Office (CBO), not “merely” $940 billion as previously reported (while its total costs in its real first decade, 2014 to 2023, would continue to be well over $2 trillion); that ObamaCare has prompted major corporations to discuss dropping their employer-provided health-care plans; that businesses would have to file 1099s not only for every person to whom they pay $600 in wages but for every vendor with whom they do $600 in business, thereby imposing a paperwork nightmare and incentivizing companies to avoid doing business with a myriad of small firms rather than a handful of big ones; that ObamaCare would create 159 new federal agencies, offices, or programs; that the Obama administration’s Medicare Chief Actuary says ObamaCare would raise U.S. health costs by $311 billion in relation to current law and would shift about 14 million people off of employer-provided insurance — and some of them onto Medicaid; that ObamaCare’s would discourage employment, as — for example — hiring a 25th worker would cost a business $5,600 in addition to wages and benefits; that ObamaCare would impose a severe marriage penalty, offering additional subsidies as high as $10,425 a year if couples merely avoid marriage; that a lone provision in ObamaCare, which would penalize employers if their employees spend more than 9.5 percent of their household income on insurance premiums, would cut the net income of businesses like White Castle by more than half; that even though ObamaCare was supposed to get people out of emergency rooms and into doctors’ offices, those who build emergency rooms say the effect will be just the opposite and that they are gearing up for increased business; that doctors shortages are looming and would be accentuated by ObamaCare, both because more people would seek care (otherwise, what would the $2 trillion be buying?) and because fewer people would likely enter a demanding profession that would now promise greater restrictions and lower pay; and that President Obama’s nominee to head Medicare and Medicaid under ObamaCare is an open advocate of the British National Health Services’ NICE (National Institute of Clinical Excellence) and its methods of rationing care.

These revelations appear to have taken a toll. Together, they seem to have made a notoriously unpopular law significantly less popular.

In its May poll (conducted from May 11-16), Kaiser Health detected a noticeable decline in ObamaCare’s popularity. Almost alone among the polls, the monthly Kaiser poll had never showed ObamaCare facing a public-opinion deficit at any time this year. This is partly because Kaiser polls all Americans — not merely registered or likely voters — and ObamaCare polls better among the politically disengaged.

In April, Kaiser showed that the gap between ObamaCare’s supporters and its opponents was 3 percentage points — in ObamaCare’s favor. Now, in May, it shows that gap to be 6 percentage points in the other direction — a 9-point swing in just one month. (In a poll of likely voters, released in May but not in April, Kaiser shows ObamaCare to be facing a 10-point deficit.) Movement from last month has been even greater among those with strong sentiments, as the gap between those who strongly support the overhaul and those who strongly oppose it has widened from 7 points (30 to 23 percent) to 18 points (32 to 14 percent). Furthermore, only 44 percent now say they are “confused” by the law, compared to 55 percent last month. To know ObamaCare is apparently not to love ObamaCare.

Condemningly, Politico writes that the Kaiser poll “suggests the accelerated implementation schedule has failed to sway a skeptical public — or even keep health reform’s most ardent supporters on board.” Supporting Politico’s statement, the percentage of Americans who strongly support the law has dropped from 23 to 14 percent in just one month.

Rasmussen, whose poll includes only likely voters, has recently registered a similarly dramatic shift against ObamaCare. In the first eight weeks following the overhaul’s passage, Rasmussen showed strong and consistent support for repeal. The average gap between those who supported repeal and those who opposed it was 16 points, and it was never lower than 12 points or higher than 20. This week, the gap has ballooned to 31 points. Americans now favor repeal by a margin of almost 2-to-1, with 63 percent favoring repeal and just 32 percent opposing it.

A more detailed look at the numbers provides even more encouragement for those who are actively pushing for ObamaCare’s repeal. Independents support repeal by a full 50 percentage points: 72 to 22 percent. The number of voters who “strongly” favor repeal (46 percent) dwarfs the number who oppose it even “somewhat” (32 percent). Fewer than half of the President’s own party is against repeal (49 percent). And, per capita, it’s easier to find a Democrat who supports repeal (36 percent of them do) than any voter — regardless of party — who opposes it (only 32 percent do). By a margin of at least 15 points, every income group except for those making less than $20,000 a year (who oppose repeal by 8 points) supports repeal, with those making between $20,000 and $40,000 supporting it by the widest margin: 49 points.

Perhaps the most ominous sign for President Obama and the Democratic Congress is evidence that younger voters are jumping ship. In the first eight weeks after passage, an average of 58 percent of likely voters under age-30 supported repeal — 2 points higher than voters as a whole. This week, 70 percent of them support repeal — compared to 27 percent opposed, for a margin of 43 points. The only group that’s even more supportive of repeal, at 72 percent, is those in their 30s. But, in truth, every age-group is overwhelmingly supportive of repeal; it’s just a question of degree. The smallest margin in support of repeal, logged by those between the ages of 50 and 64, is 19 points.

President Obama talked a lot about the need to pass ObamaCare and put it in the history books. Americans are now making it clear that they want to relegate ObamaCare to the history books.

And once it is gone, there will be no shortage of ideas that can replace it — ideas that will actually lower health costs, make health care more accessible for all, and not compromise quality. A fine example was presented in these pages two weeks ago by Peter Hansen, who wrote that the truly effective way to lower health-care costs is to give people the opportunity and incentive to shop for value — for the highest-quality care, at the lowest-possible prices.

To do so, and to increase fairness, Hansen argued that we should allow all Americans to deduct their full health-care costs (not just their insurance premiums) from their taxes — and not just from their income taxes but also from their payroll taxes (a more important deduction for lower-income workers). This would level the tax playing-field between those with employer-provided insurance — whose taxes wouldn’t change (except that they could now also deduct out-of-pocket expenses) — and those who purchase insurance on the open market and would no longer have to do so with after-tax dollars.

Hansen’s proposal could be paid for in part by taking a page out of my small-bill proposal (www.smallbill.org) and gradually rerouting and putting to better use some of the funds that provide federal assistance for emergency rooms. It could also be paired with a couple of other small-bill proposals, like allowing the purchase of insurance across state lines and providing some federal funding for state-run high-risk pools to help give access to insurance for those with prohibitively expensive preexisting conditions. In addition, his proposed $1,000 tax deduction for buying insurance could be changed to a $1,000 tax credit, which would more profoundly reduce the number of uninsured. And I would cap the health-care deduction at some defined level of annual health-care spending, perhaps at $50,000 or so, to try to prevent taxpayers from having to subsidize cutting-edge, unusual, or perhaps even unnecessary procedures purchased out of pocket by the truly rich.

With or without the incorporation of these suggestions, Hansen’s proposal is refreshingly simple and keen-sighted, and it rightly focuses on the one thing that ObamaCare doesn’t really focus on much at all: lowering health costs. In truth, the Obama administration’s obsession with insurance (and with government control) has kept it from focusing on making health care more affordable — which is what Americans really want.

A huge part of the problem with our health-care system today is that far too much money is funneled through insurers, which keeps patients from controlling and allocating their own health-care dollars more efficiently and which also adds an unnecessary layer of costs. Dr. Marcy Zwelling, a Southern California private physician, says that the same MRI for which insurers are billed $2,000 to $3,000 — and for which they might actually agree to pay something like $1,000 (depending on their negotiated rates) — costs only $300 to $400 for patients who pay cash. Two weeks ago in these pages, Tony Mecia cited Dr. Brian Forrest, a North Carolina doctor who says that the prostate-cancer screening test for which a lab bills insurers $184 can be purchased by his patients for $30 in cash. It makes no sense to be funneling so much money through an unnecessary middle-man.

Yet, according to the CBO, in ObamaCare’s real first dozen years (2014 to 2025), it would funnel $1 trillion from American taxpayers, through Washington, to private insurers — in exchange for insurers’ largely giving up their autonomy to the government. Thus, ObamaCare would further entrench insurers’ position as an inefficient middle-man — that’s a key reason why insurers largely supported the overhaul — while simultaneously entrenching an even more problematic and inflexible middle-man in the form of the federal government.

Conversely, Hansen’s plan would empower patients, make prices more transparent, give patients more opportunity and incentive to shop around, and thereby lower health costs — all without reducing liberty or lowering the quality of care.

Hansen’s plan, or one like it, would be like a breath of fresh air. But first we have to get rid of Obamacare.

Read more at the Washington Examiner: http://www.washingtonexaminer.com/opinion/blogs/beltway-confidential/obamacare-taking-on-water-95104599.html#ixzz0pO8XMTeX

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…)

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.

I had an intrathecal pump implanted on November 4, 2009 for muscle spasticity in my legs. I used to take 80mg of Baclofen pills every day for this symptom, but they were not very effective and I was sleeping nearly 24/7 with that dose.

Lioresal is Baclofen in liquid form. The pump is programmed to provide dosage directly to my spinal cord through a tube. It’s all under the skin. Initially the idea of this totally grossed me out. I never thought I’d be able to try this, let alone succeed. But I was desperate and I made myself have the attitude that this is going to work. So far, so good.

Yesterday was the first time my pump was refilled. I was mildly apprehensive. The whole procedure took five minutes. This time the Nurse Practitioner, Susan, performed the procedure. After she sterilized the area, she must have used something topical to numb the spot. She placed a template on top of the pump to help her find the center. She also used her fingers to feel the placement of the pump to ensure she found the port. Using a very small needle, she removed the remaining medicine and using the same needle, replaced my pump with new medicine. I was pleasantly surprised that other than an initial small sting, it was quite painless. My dosage has slowly been increased and yesterday she increased it to 99.3 mcg per day.

Both of my legs have spasticity. My left leg is the weaker of the two and my right leg has the most spasticity. As the Lioresal releases the spasticity, weakness will be exposed. Spasticity (or rigidity) gives a false sense of strength because when your legs are stiff, they’re also sturdy. But when the rigidity is eased, then you must rely on your muscle and balance. My legs never feel all that weak when I get an increase, instead they feel more heavy. It’s a strange thing.

When I think of the days I instructed aerobics, played racquetball, and jogged, I recall how I enjoyed my freedom, my endurance, and my strength. I never could have imagined I’d find myself in the condition I am today, barely standing at times. But all that I gained during my fit years has probably provided me an inner strength, a determination that keeps me moving forward right now.

Oh, and the weather has turned around here. It’s been sunny and warmer. I haven’t even looked at the temperature, but I’d think in the 40′s. A light jacket is the most that is needed. While the sun is definitely encouraging to the spirit, the warmer temperature is simply easier to move around. I thought this was more in my head but Susan confirmed that cold weather is hard on people with the spasticity! I felt better in that I knew I was not being a baby. I never want to be a weakling about my partial paralysis. Why? Because there’s too many people who are much less mobile than I and they are so productive. And they smile!

I think I can get the hang of this.

I’m struggling with my spinal issues. I’m having a really tough time but that’s how it goes. When you have an illness or disability or both, you’re going to have ups and downs. I know that. It’s kind of like, ‘deal with it.’ OK. I will. I am.

I have been staying in bed nearly all day for at least the past week. Of course the chain reaction is that my legs get weaker and I get more wobbly. It’s time to do some of that reaching deep down inside again. It’s a matter of attitude, but darn it is hard.

For example, just today I didn’t want to move. It’s hard to find a comfortable position, but I was in a fairly good place. If I don’t move, I don’t hurt. It’s sort of like that. But that survivor voice inside of me was telling me that the longer I lay there, the weaker I get. It took that voice a while, and I got up.

I swept the place and steam-cleaned the tile floor, as well as do three loads of laundry. After dark, I walked (using my walker with wheels) to the mailbox. I cooked a chicken breast seasoned with marjoram for dinner. It’s much better to answer that voice.

As I type this I realize that I have not attained my level dosage of Lioresal (liquid Baclofen in my Intrathecal Pump) yet. I was told it could take up to 6 months after the implantation of the pump. I’m just coming up on 4 months. I’ve got time to navigate I guess.

I recall both my Rehabilitation doctor and my Physical Therapist both telling me that with spinal cord/nerve damage, symptoms may continuously vary. (I need to reaffirm I understood that correctly.) That is unsettling for me at times because just when I get to a place where I feel like I can handle it, some function of mine or sensation starts to change. How long will it take me to accept these sensations? I always thought if a person had spinal cord damage, you either had sensation or you didn’t. I never knew there was an inbetween…sort of. The burning of my feet is miner compared to the sensations inside my body. The body is just too fascinating for me at times!

I’m thankful for my good doctors, though. I remember when I was going to a group who were not cutting it for me. I am so thankful that I had the opportunity to find new doctors, and what a grand team I have now! What would I do if I were still being attended by the previous doctors and feeling like I do now?

This cold weather has got to go! I’m blaming my lack of umpf on the cold.

I’ve canceled my PT session this week and the following. I’m taking a break until I get my pump refilled and the medicine dosage increased. Maybe by then our temperatures will rise and I’ll be more eager to cope. I hope I survive my plan.

Oldest son called tonight. He’s going for a second trip to Haiti. He and several other members of his church went to Port of Paix for a week; they returned just last week. Tonight P calls to tell me he returns on March 6. I’m proud of him. He’s my first baby, so I still hold a mother’s worry over him. But he’s working for the Lord, so I know he’s where he should be.

He was quite moved from his last trip. The people who come to Christ are so authentic down there. People with so little yet they are so rich in other ways. My heart aches for them so. I’m afraid if I were well and volunteered for one of these trips, I may not come home. I fall in love with the little children when I look at their smiling faces. The older people are also very moving. I just think they are a very special people.

So many people from here are doing so much for Haiti. We’re always so appreciative of what we have and enjoy helping others.

This son and his wife invites me to live with them. Oh how much joy I’d have to see them every day, especially the grandson Caiden. What a precious baby boy! My daughter-in-law, A, is such a gentle spirit. Her mother and I connect so well. What a blessed thing it would be to live with them.

My dilemma? Leaving son and his family up here and then secondary, changing doctors. I love my entire doctor team, and I have a large one with all that I have going on. However, I’ve heard wonderful things of the hospital in son’s hometown. That is encouraging and may make the move more pliable.

I feel like I need to wait for things to settle down a bit first. There’s such commotion during these times. It’s disheartening for sure. I’m not happy with our goings on…but the best I can do is to pray and to vote.

“Pride is like bad breath: everyone knows you have it but YOU!” [author unknown]

I had to share this. I heard it watching one of those Sunday morning ministers. It was too icy and cold to get out today–for me anyway. The minister was a fairly good speaker. This quote caught my attention. I’m more guilty of it than I realize or care to admit.

Think I’ll go rinse with Listerine now. I’ll work on the Pride-thing, too!