Cindy's Multiple Myeloma Blog

A healthblogs.org weblog

First Post in 2012

May31

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!

Obamacare’s Broken Promises

May19

Senator John Barrasso (R-Wyoming) said in his March 8th, 2011 piece, “Americans want the health care they need, from the doctor they want, at a price they can afford. The new law fails this test. It’s only taken a year to break almost every one of the president’s promises.” Then Senator Barrasso describes a broken promise for each month since March 2010.

    March ’10:

Promise: Obamacare would reduce the deficit.
Truth: The Democrats cut over $500 billion from Medicare to start a new entitlement, which produces an increase to the deficit by $260 billion.

    April ’10:

The cuts to Medicare could drive up to 15% of hospitals out of business.

    May ’10:

In order for over 200,000 Americans with preexisting conditions and expensive health insurance to be eligible to enroll in the new high risk pools (created in the health care law), they’d first have to drop their insurance and go without coverage for 6 months.

    June ’10:

The Associated Press blew the whistle on the administration about the “tax credits” to small businesses. The only businesses eligible for these credits employed fewer than 25 people. For companies who employ more than 10 people with salaries over $25,000, the tax credit “drops off sharply”.

    July ’10:

This administration’s Justice Department “confirmed the individual mandate penalty is a tax increase.” But, when ABC news’ George Stephanopoulos asked the President if the mandate penalty was a tax increase, the President ‘rejected that notion.’ Contradictions?

    August ’10:

The President assigned Dr. Donald Berwick to run the Centers for Medicare and Medicaid Services, without a Congressional hearing. This is the guy who says he gets a ‘romantic feeling’ over the UK plan. Dr. Berwick believes in *government rationing* and at least honestly states, “the only issues is whether we ‘ration with our eyes open’.” President Obama promised not to ration care. Another broken promise.

    September ’10:

Remember when President Obama repeated over and over and over again that if you like the coverage you had today, you can keep it? He promised the same about keeping your doctor. The new rules estimated that 80 percent of small businesses would be forced to change the coverage they offer their employees.

    October ’10:

Obama’s cronies from unions and big corporations began complaining about the expensive mandates. So, for those “politically connected to this administration”, “waivers” were handed out. What about all the fairness this President and the liberal Democrats preach about? Let’s see—the American families still will be expected to take on the law’s expensive burdens – just not the President’s “favorites”. That’s reassuring.

    November ’10:

The majority of the American people made it very clear they did not want this law. They were totally and wholly ignored and even ridiculed by the President and Democratic party. As a result, the Republicans were handed their biggest majorities in the House of Representatives since President Eisenhower.

    December ’10:

President Obama and the Democrats said the country needed this law. The same law that one of the biggest unions in the country, the SEIU (Service Employees’ International Union), admitted that fulfilling the requirements of ObamaCare would be “financially impossible.” A federal judge in Virginia ruled that it was unconstitutional to force Americans to buy a product.

    January ’11:

“… the Medicare actuary called the administration’s claim that the health care law would bring down costs “false, more so than true.” Also, a federal judge in Florida struck down the entire law as unconstitutional.”

    February ’11:

“In February, we learned that the IRS’ 2012 budget specifically mentions the health care law 250 times as a source of authority and funding for new powers. They called the health care law “the largest set of tax law changes in more than 20 years.” To begin implementing these changes will require thousands of new Washington bureaucrats.”

Nancy Pelosi stated, “We have to pass the bill so you can find out what’s in it.” Now we know….it should be repealed and replaced.

March 2011 – I’m Still Here

March14

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…)

Lack of Water Causes Patients to Drink from Vases

November23

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: http://www.dailymail.co.uk/news/article-1332070/Stafford-Hospital-inquiry-Patients-left-water-forced-drink-vases.html#ixzz16AGmlll1

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

It Feels Like Forever

October29

It feels like forever since I’ve written in here.

It feels like forever since I’ve had Multiple Myeloma.

It feels like forever since I could walk without help.

It feels like forever since I could go to the bathroom normally and feel I actually accomplished something.

It has been forever since I worked. My last day working was 10/4/05…or was it 10/3/05? I don’t even remember.

As I start typing this I realize I shouldn’t have started this entry, as I am nearly nodding off. I’m in serious need for a nap. Ever since I got sick, when I get fatigued – it’s over. I can almost fall asleep standing up (with my walker of course). I better hit the main points fast. . .

MM-wise, I’m doing great. My oncologist even extended the lapses between visits to four months versus three months. My lab numbers improved a bit last time; seems I’m healing myself on my own. I think this flucuation is normal in a partial remission like what I seem to be in.

As for medications, I’m on but a few. I take 5mg Methadone three times a day (15mg per day total). I take blood pressure medicine, I think it’s Lisiprol…no…I forget. I think it’s 20mg. I used to take Norvasc 5mg. It did fine but my ankles and feet were swelling. When I changed bp medicines, the swelling went down and my bp remained just fine. That’s all – except for the Intrathecal Pump with the Lioresal.

I’m just so sleepy I’m falling asleep typing. I will return and desribe more of what’s going on and where I’m at.

Let the Death Panels Commence

August30

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.

I’m not in favor of America’s “Obamacare”, though I am in agreement improvement in our existing system is…was needed. I’m not in favor of bureaucracies making decisions about treatments and drugs based on financial records and cost-benefit analyses. That is appalling to me. Anyway, this article shows just how things will work with Obamacare…and this is just the beginning. However, rather than appear all doom & gloom, I have faith in this great country that we’ll either repeal Obamacare and then make incremental improvements that are in the best interest of the patient, the doctor, the hospital, the system, the cost, the debt OR we’ll just remove about 1,990 pages of the 2000 page bill (those #’s are not accurate, but you get my drift…) – and keep the good part.

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

Pain in the Gas

July18

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

June25

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

May29

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

Not Time to Throw In The Towel

May15

Good news, I guess, at the doctors the other day. My markers seemed to either stay steady or improve. Although my doctor ordered the m-spike test, the lab missed it. Since the other markers were OK, he’s not worried. As a matter of fact, instead of seeing him in 3 months as usual, I will see him in 4 months.

The xrays my doctor ordered didn’t show any MM activity. So, it continues to simmer, but it’s not erupting thus far.

I had back-to-back appointments. First the pump refill, next the Oncologist. Jessica refilled my Intrathecal Pump this time. Susan ordered the higher concentration of the Lioresal, so this refill should last me 6 months. I asked Jessica to increase my dosage another 10%. Since I’ve had leg spasms and some tone yet, I thought it a good idea.

I was OK until the next day. Wednesday morning I got the refill and adjustment and by Thursday evening, I could hardly stand up, even walk using a walker. It kind of scared me. My legs feel like they each weigh 100 pounds as it is; now they each felt 200 pounds, doubled. I had sat at the kitchen table reading most of the day. When I tried to get up, I thought I wasn’t going to make it to the next room. But somehow I turned the lights out, got ready for bed, and on to bed.

Upon waking Friday morning, I was still in bad shape…but maybe a little better. I wasn’t better off enough to have the nerve to get out and meet my sister for breakfast. I canceled that plus called my friend and canceled her invitation of dinner after church Sunday. I just didn’t know how I was going to get around.

I called the doctor office and left a message for Jessica. She’s out on Friday’s, so I knew I wouldn’t hear from her until Monday. This was not an emergency and certainly not life or death; my legs were just not supporting me. The symptoms I was having sounded like symptoms of too high a dosage. Sometimes when the medicine releases the tone, weakness is exposed. The tone actually provides support in standing.

So, I rested most of the day Friday, but got up every now and then. Gradually my legs improved. They’re still a little wobbly, but I can sometimes use only a cane and even sometimes walk without anything from room to room.

I have no idea what happened. It was strange that it didn’t show up until nearly 24+ hours after the increased dosage. Jessica will call me Monday and I’ll have more information to tell her. If I’m no worse than I am now, and especially if I improve, then I won’t return for an adjustment.

So, no reason to throw in the towel yet. I guess I need to keep up the good fight. Well, I’m glad I don’t have to be preoccuppied with worry over treatment because I have so many books yet to read. I primarily read books on politics and history. I have books on ecology, animals, and a wide variety of topics. And yet…so many goals and interests….drawing, painting, quilting, scrapbooking, piano, Spanish……(jogging & yoga would still be here if I could…)

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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