Sailing Lands Away

Bang! Bang! Bang! Four shots ripped through my groin and I was off on the greatest adventure of my life! So began the book I had my nose stuck into. It was called Sleep Till Noon and written by Max Shulman. Of course, this was back in 1976 that I was reading this. I had just finished The Man Who Wrote Dirty Books, another very funny book that was written by Hal Dresner. The books were so funny that I recall them even today, especially the opening line of Sleep Till Noon. That’s the cool thing about well written books, they tend to stick with you even as the years reel off one following the other until decades have gone by.

Books can be the salvation of someone suffering the throes of chemotherapy. As your brain goes into a weird sort of neutral and sleep consumes the greatest portion of your days, the in between moments need something, a distraction, to keep one from dwelling on just how shitty chemotherapy can make you feel. The funny ones can lift spirits weighed down like a piece of paper pinned by an anvil, and perhaps this is why I ready fourteen Janet Evanovich books about Stephanie Plum, the recovery agent (read: bounty hunter) from Trenton, New Jersey. They made me laugh right out loud in their silliness. Yet they drew me enough that I buy and read her succeeding books still. On a more serious side, I bathed myself in Robert B. Parker’s Spenser series, and Jonathan Kellerman’s stories of Alex Delaware, Michael Connelly’s Harry Bosch, and John Sandford’s Lucas Davenport. There are more; according to Amazon.com, I bought no less than 294 books during the period of April 2008 and September 2010. I wore out two Kindles reading all of the novels and short stories.

But they got me through some of the toughest times of my life, and that includes the horrific thirteen months I spent in Vietnam, where the VA asserts I picked up the seed of what would bloom, thirty years later, into Multiple Myeloma. At the same time, I went to an unofficial university called the School of Hard Knocks and got an unwanted education in elements of physiology and medicine. It’s remarkable what a cancer patient can learn in the course of dealing with the symptoms of the illness and worse yet, the side effects of the treatments available to combat it. I still had time to reflect on things, especially my mortality, which was the point to reading all of those books. No one wants to face the fragility of their lives and realize just how powerless one can be at the whim of circumstance. I was desperate for diversion and I found it in books to a much greater degree than television or movies could provide. It’s easier for one’s mind to wander as images flicker by and exploit persistence of vision, fooling the mind into seeing those images as a flowing approximation of reality. Books demand focus, and that focus holds reality at bay.

In my english class, way back in 1958, there was a sign on the wall that said a book is like a ship to sail me lands away. I always thought that it was an odd statement and never really appreciated how profound a statement it was until I endured treatment through chemotherapy. The treatment skewed my sense of reality and enforced moods that fueled despair, and of all of the things at my disposal, only books distracted me from my own situation to the point of offering a respite from dark thoughts. Of course, with the memory affects of chemotherapy, I managed to read some books more than once, and like an Alzheimer’s patient I greeted them anew with each read. But still they worked a kind of magic that took me away from my troubles.

I’m glad that I’m a reader. I attribute a lot of my emotional health to my ability to bury myself in books. They were the blanket I pulled over my head to defend myself against the waking nightmare I was living through. For every blow my life sustained, it was a book more than anything else that deflected the severity away and shuttled the pain into the same fictional realms the books I read were based on. It didn’t matter whether the book was made of paper or photons, it was all the same effect, and it was a good effect.

This is the answer I gave when people asked me how I was able to stand the rigors of the treatments I chose to undertake. It is still my answer today. When the nausea and body aches, the burning and chill of neuropathy was almost too much to bear, my books were like ships that sailed me lands away.

Virtually Perfect

“What can I do for you?.” said the voice on the other end of the phone. I was talking to one of the nurses at the VA medical center oncology department, inquiring about why my pain meds were two weeks late. She said she could help me.

“I’m glad to hear it.” I said back, “But the lack of pain pills prevents me from gushing enthusiasm.” It was true. I’d run out of the sustained action morphine pills around the 5th of the month which left me only the remnant contents of my short acting pills. Since I have to take them every three hours to get a similar benefit to the time release version, I was a bit testy from a lack of sleep. It’s hard to get the full benefit of resting when you wake up every two and a half to three hours to take a few pills. I’ve tried to go back to sleep and ignore my scheduled dose, but abandoned that quickly. There’s nothing like being roused by serious pain. It also prompts one to have some very icky dreams involving pleasant subjects like being eaten by crocodiles and sharks. Look, I know that crocks and sharks don’t fraternize, but these are dreams and anything can happen and seem quite realistic.  I spoke again: “Could you see what the problem is and get it fixed for me?” The nurse said she would.

“While I have you on the phone, Mr. Kirkpatrick, I really should schedule you for a visit with the doctor. It’s been six months since you’ve been in.”

“I had a good summer. Okay, I guess I do have a few things I’d like to talk to him about.” I did. The nurse asked me what it was I wanted to discuss. “I have a bunch of new pain locations.” I left it at that.

“That doesn’t sound good,” she said. “Where are they and how would you describe them?”

“They’re in my body and they hurt a lot.”

“No, I meant where in your body are they?”

“Um, my back, legs, arms, shoulders, feet, ribs, hips and my head.”  There was silence for a few beats.

“How would you rate the pain?” she asked. “On a scale of one to ten where zero is no pain and 10 means you cannot function because of the pain.”

I thought about it. “Well, I guess that depends on the moment. I always feel it so there’s no zero involved. I think you should give me a scale that starts at about 4 and goes to ten. Or maybe a scale that goes from four to ten with occasional peaks of 20.”

“Can you describe the pain?”

“Yeah, it’s a sensation of varying discomfort that makes me say things like ‘ow’ and goes up to me shooting spittle as I scream and swear a lot.”

“No, I meant is the pain sharp or dull, like an ache, and does it move about or stay in particular locations?”

“Well, that’s a problem. They don’t all hurt at once, and it seems like there’s no place sacred from it. And it can be both an ache and a sharp pain.”

“Oh, I’m sorry to hear that.” She actually didn’t sound all that contrite. “I can get you an appointment at the end of January, would that be alright?”  I allowed as it would be just fine, but told her that I was hoping she could fix the pain prescription thing a bit sooner. She said she would take care of it right away. I thanked her and we hung up after the expected wishes for happy holidays.

Fifteen minutes later my phone rang and it was the nurse from my primary care doctor. “I see you have an appointment with oncology at the end of January.” I agreed that I did. “Well, doctor would like to see you here too. It’s time for your annual checkup.”

“You’re just saying that,” I said. “Because you’re jealous of oncology.”

She giggled. “You caught me.” Actually, the VA requires that we vets go see our doctor every year, specifically to monitor for any changes in health status, good or bad. I don’t see this as bad policy. “We should set you up for a number of tests as well, but I will let doctor decide about those after he’s seen you.” It always bugs me that nurses say “doctor” instead of “the doctor,” as if doctor was a name rather than profession.

“Vet agrees.” I said. I love to be facetious, especially when I’m in a pain induced bad mood. But she was cheerful and she’s a really good nurse who’s helped me a lot over the years and it’s hard to be mean to her, so I settled for just being slightly wise-ass. We made arrangements for my primary to see me right after my oncologist. No sense in making me come out there on different days.  She admonished me to stop by the lab for a blood draw an hour before my appointment time. I told her that would be fine, I had to see the vampires for my oncologist too. Again Christmas wishes were exchanged and we hung up.

I set my phone down and it rang again so I picked it back up. It was my oncology nurse again. She called to reassure that she found the delay and had fixed it. My medications were being handed to the postal system as we spoke. I was reassured. Apparently the pharmacy thought I would pick it up at the counter and so my medication had been languishing on a shelf waiting for me to fetch it. Problem solved.

When the VA mails my medications, they invariably show up the following day, what with the medical center and I in the same city. But I wondered about whether that would continue to be a reliable schedule, what with the announced changes to the postal system on the way. When Congress, in its infinite wisdom saw that the postal system was a solvent agency, they immediately began to siphon money from it. Our sitting government is equal opportinity and hates it when any of its agencies functions properly. It makes the bad management of the rest of the government stand out too much, and not in a good way. The Constitution just says that a post office has to exist, it never said it had to work.

I thanked her and once again we shared good holiday wishes and we hung up. I sat there looking at my phone and thinking about the upcoming appointments. I actually have a little trepidation about going in. Things have changed for me of late, and not for the better. I’m a bit afraid I’m going to get some bad news. I went through the summer feeling almost normal, save the occasional breakthrough pain –that’s discomfort that spears through the daily morphine dosing that raises my pain threshold and turns level five pain into level one. For the most of the summer I felt good considering my situation. But as August gave way to September, and it to October, my breakthrough pain was happening more and more often, raising the dosage I needed to maintain a comfort status quo. Now here in December, my usual dosage isn’t hacking it, and that’s why I was shaking the VA tree to get my medication snafu resolved. It’s been, to be honest, a pretty crappy December.

However, I have been cheering myself up playing virtual Santa Claus for my family and close friends. I spend hours online looking at all of the wares and products up for sale and selecting the many gifts I would be handing out had I actually purchased them. Since I have the budget of your average tree stump I’m not in the position to buy any of this crap, and so I make myself feel better pretending to satisfy the wildest dreams of my circles. If I could only get them all to pretend that they got something, I might have myself a workable system in the making. It’s actually a lot like me pretending to buy tickets for the Washington State Lottery and them pretending to let me win. It passes the time.

I play a lot of imaginary games, especially with the VA. For instance, they sent me a notice that I was given a specially adapted vehicle grant so I could get myself transportation that would carry my mobility scooter. I filled out the requisite forms and turned them in. Now they’re pretending they will process them eventually. They also qualified me for a specially adapted housing grant which would cough up to remodel a home or help me build a home that accomodated my disability. They’re pretending that the mortgage loan system will give me a mortgage, which they’re resistant to do what with me not working, and my disability income immune to garnisheement should I have difficulty meeting my mortgage payments. I’m pretending that I actually trust the mortgage loan system enough to risk buying a home with their “assistance.” There’s a lot of pretending going on in my life. I live a very virtual existence.

Things virtually couldn’t be any better. I should be thrilled to live such a virtually perfect life. But as I indicated earlier, my pain medications are working so virtually well that I’m virtually as comfortabe as a chipmunk in torpor. With things as they are, I could virtually live forever.

Catch Up! It’s Been Ages!

My goodness, it’s been five months since I’ve written, and then it was about politics! Egads! What’s wrong with me? Politics are about as lethal as MM! At least in the past three years! lol

It’s amazing that the last time I was on any treatment for MM was in October 2007. I was on Revlimid and Dexamethasone. It’s been so long that I’ve even forgotten the dosage and schedule. My “numbers” (e.g. IGG serum, & other markers) have remained in the normal range…except there’s one that’s high…but it’s not one that really matters.

My main problem now is the spinal cord damage at my T8. I’ve written about it, so you can look through my entries if you need to hear about it. One day I may just clean this blog up. It’s not organized according to topic.

I saw my oncologist about a month ago. He told me that the regimen today is that once you gain a partial remission (or a ‘very good partial remission’) like I have, “they” keep you on Revlimid….I guess to keep things in check. Since I’ve been off of it for so long, he’s going to leave me alone.

Remember:I changed doctors at one time. Before I returned back to my original oncologist, I had transferred doctors and stuck with my SCT doctors.

I was a little jarred the other day when I found out a lady I befriended in about 2007 or 2008, her MM has returned. It was returning when we lost touch. I heard from her the other day and she’s had two more back-to-back SCTs (unsuccessful). She had tumors in her legs and had some operation to take care of whatever was going on. She’s now on ‘chemo’ and she named about four or five drugs. Revlimid was one of them. She mentioned that nasty “H” (hospice) word. I guess they talked about it, I don’t know how serious, but….they’re setting that aside for now.

This is upsetting to me because when I first met her, she was doing better than I was. She had a successful SCT where I didn’t. She was riding her horses where I couldn’t. The ‘fat lady hasn’t sung’ yet, so I’m not giving up on her. She’s got a great attitude and the Revlimid might be just what she needs. If you’re a person who prays, please pray for my friend, Jackie.

Well, other than it’s been five months since I’ve touched base and that I’m still dragging these crippled legs around, that’s about it. My MM is laying low. I’m still in yucky pain/discomfort from the spinal stuff and I still have trouble with “elimination” but there’s worse things that could be going on. I enjoyed my patio this last summer reading under my table umbrella. I planted flower pots, tomato plants, arugula & green onions in containers and had a regular little garden on my patio. Maybe I’ll post some pictures to show you how “cute” my patio was. It will be cuter next summer. Oh…and I’ll have to buy a new umbrella. Foolishly, I forgot to close my umbrella one night. A very windy rain storm approached and blew my table over, umbrella and all. Bye-bye umbrella. I plan on replacing it with a “cuter” umbrella next summer.

God Bless!

The knocking stopped…..and then…..

Have you ever had a car making a terrible noise…….you take it to the garage…..and NOTHING!!  And then you get back home, and it starts…….again.

That’s sorta’ how it can be, sometime….at our house with this thing called Multiple Myeloma and pain. Last Thursday, my honey went to the Driving Range to hit golf balls. This was his first such outing in several months. And ever since he (we) has paid the price, in pain.

Sunday was just an awful day – with regard to level of pain. Finally, around sunset (isn’t that when it always gets worse) I called his Pain Management Specialist. Thank goodness, this is one of the doctors that will share his cell phone number (although this was my first call to him), and he also makes house calls!! He told me what to do to get the pain under control, and said he’d see him on Tuesday (Monday was a surgery day).

Monday turned out to be a pretty good day…..for both of us (well, if he’s pain free…..I’m headache free!) Then came Tuesday and our appointment. Not that I wished my honey any pain, but wouldn’t you know on a scale of 0 – 10……he was 0 that day! (Take the noisy car to the garage, and it’s “knock-free”, everytime!)

Anyway, things were good. Doc thought the Driving Range was an excellent idea as long as honey didn’t overdo it. And, he also gave me permission to increase the dose of Dilaudid, if necessary. So, we walked away with a pat on the back, a bill, and new prescriptions. Since they are controlled substance drugs, we have to do this every three months, anyway.

And along came today. It started early this morning with pain and chills. He’s usually cold, because of his anemia, but here was this knocking (pain), again! He requested “one of my little white pills” (dilaudid), which usually work their magic after about an hour. Two hours later, he was still in pain…..so I gave him another “little white pill”, and then there was the headache…..so I administered two Tylenol. Finally he slept, and with sleep comes relief from pain.

He rested and slept, off and on, for most of the day….and then came late afternoon, again……and MORE pain, seemingly worse than ever before. So, out came the “little white pills”, and this time I gave him two as well as a Phenergan, for nausea, which always bring blessed sleep. The pain subsided……a little.

Tomorrow, we’ll go back to the good pain doctor and probably an injection of steroids. This time, though, the pain is in an area of the back where it has never been …..around the T5 and T6 vertebrae. And so I worried…..could it be pneumonia??

And, I’m concerned. There is an odor……to his breath…..that I smelled way before I knew he had cancer. I later learned that it’s an indication of Renal problems. Tonight, and last night, I smelled that same odor. His eyelids are his greatest telltale sign of dehydration, and they are beginning to show those signs, even though he drinks plenty of liquids.

I called the Cancer Center “on-call” doctor and she suggested that I take him to the nearest ER to be sure he doesn’t have (1) Renal failure (2) another compression fracture (3) pneumonia. If there’s a choice, I guess I’ll take door number 2. There’s a hospital nearby…..much closer than if we were at home…….but he “assures” me that he’s better. I don’t want to have to make this trip ……to an unknown hospital……in the middle of the night.

This time last year, when we first received the MM diagnosis, we were making these same kind of trips to the hospital. I didn’t intend to mark the milestone with “celebratory” trips, this year. I thought things were really going good at our house because the knocking stopped, and then…….

Pain Management in Cancer Care

Hello Friends

I have had the privilege to have received an email from Mr. David Hass who has written an article about pain management. Although it does not specifically talk about Multiple Myeloma it is still pertinent for any kind of Cancer. It’s strait to the point, so here goes:

This is how the communication went:

Hello Yvon,

Thank you for your help and consideration. This article is about dealing with Pain during Cancer treatments. Cancer affects one’s life in many ways and many people have to deal with immense pain when going through treatments. Some people learn how to cope with this pain and others are referred to certain pain medication. People need to learn how to use pain medication correctly and to use the correct pain medicine when dealing with their treatments. I hope you can share this important message with your readers.

David

Article:

Pain Management in Cancer Care

When treating cancer, including breast cancer, melanoma, and even rare cancers such as mesothelioma, improper treatment of pain is a common problem. Cancer pain can be quite severe and often patients and doctors shy away from fully treating it. Although improvements in treatment have been made, awareness of the proper use of medication needs to be developed.

At every single doctor’s appointment, you should be asked about your pain. It’s crucial to get on top of the pain before it gets out of control. It’s far easier to manage pain than to try to reign in out-of-control pain. If your doctor isn’t asking appropriate questions about your pain, or you feel like you need better pain control, ask for a referral to a pain specialist. It is true that many scammers do exist, but they aren’t likely to be people who are actually in pain.

Do you feel uncomfortable discussing pain with your doctor? You may have been brought up to believe that you should “suck it up” or “just deal with it.” While this may be appropriate for a bruise or a paper cut, cancer pain is nothing to mess around with. Nobody will ever think less of you for asking for help when it is needed. When your doctor discusses pain with you, be completely honest. Your doctor wants to help you and there is no reason for you to suffer when you don’t have to.

You may have heard news stories of famous celebrities becoming addicted to painkillers and then dying as a result. While this can happen, it is unlikely when pain killers are taken as prescribed to treat pain. If you find that you are taking painkillers to get high or when you are not in pain, then you might have a problem. Depending on your cancer or mesothelioma prognosis, your body is likely to become dependent if you take painkillers for a long period of time; however, this is not the same as being addicted. Your doctor will help you appropriately wean off the pain medications when the time is right.

Side effects from painkillers can be difficult. Nausea, constipation and fatigue are certainly possible. Side effects usually lessen as treatment goes on. If the side effects become unbearable, your medication can be changed or you can be given treatment for the side effects.

Cancer treatment can be scary. Don’t make it any worse than it has to be. Talk to your medical team about your pain and keep the lines of communication open throughout your treatment.

By: David Haas

Keep Fighting!

Yvon

March 2011 – I’m Still Here

My goodness it’s been a while since I’ve updated in this blog. Sometimes I think I should delete it, as I’m not faithful to it. I’m sort of a nut, as I have at least three different blogs! I created each blog for a different purpose as well as audience. That’s plain stupid.

This blog was more for sharing my experience with others and hopefully helping others. My journey took so many strange turns. I guess if I use President Obama’s [irritating] analogy about driving a car, I’d say I ended up in a ditch myself! Afterall, I am a Republican. LOL [He’s such a divisive President, but this blog isn’t for my political leanings, so I’ll stop right there!]

What prompted me to write tonight is I received a very nice comment from a November 2007 entry! Wow. That was a long time ago. That’s back when I still had hope of getting back to normal, or at least a whole different kind of “normal” than what my “new normal” ended up being. That term ‘new normal’ sure turns out to sound obnoxious to me now!

For a refresher in case anyone has returned to this blog and forgotten my story or if you’re “new”, I was diagnosed with Multiple Myeloma IGG in October 2005. I was 50 years old. From the day I first got sick, October 4, 2005, I was never well enough to return to work! I had a stem cell transplant (April 2006) which did not provide for any remission whatsoever for me. I was on Revlimid/Dexamthesone from 8/06 – 10/07 which was 16 cycles I believe. That regimen gave me a very good partial remission.

But my problem is spinal cord damage (atrophy) at my T8. In December 2005 it was discovered I had a tumor at my T8, so I had radiation and kyphoplasty. Between the damage from the MM/tumor, then the radiation, and later the kyphoplasty, my spinal cord was damaged at that little spot.

When I read my posts back during October and November 2007 and later, it is unsettling a little for me to read how I describe my sensations. No wonder I always felt different than everyone else. I was different! I was thinking those sensations were side effects from Revlimid, the steroids, or some other medication. It never crossed my mind the possibility of spinal cord atrophy.

You would be surprised the progression of symptoms when your spinal cord is messed up and giving wrong messages to your brain. I am nearly crippled with the weakness and pain in my feet and legs. My legs have what they call “tone” which is the same as rigidity or spasticity. They don’t bend easily or at all. I think people with cerebral palsy has similar symptoms. I used to take Baclofen (pill) for the spasticity, but it wasn’t doing the job and practically knocked me out. I now have a Baclofen pump (Intrathecal pump) that holds medicine and is connected directly into my spinal cord. That sounds totally gross doesn’t it? To think that I was one who was scared of needles and now I walk around with this pump inside my stomach that has a tube that runs around my side (underneath the skin) and directly into my spinal column is crazy gross, huh? LOL When I first heard of the possibility of me getting one of these pumps, I freaked out. I said “no way”. I meant it, too. It’s funny what you do when you have to do it. If something is going to help you, you somehow are able to handle it. It’s really nothing now that I’ve adjusted to it. I’m glad it is ‘under’ the skin. I would say it has improved my quality of life 100%. It’s not a cure, but it certainly is a major improvement.

My MM is doing fine. My markers fluctuate, go up and down a little, but they’re within the normal range and don’t require treatment so far. I now see my oncologist every six months. This Wednesday I have Lab work done and will follow-up with the doctor the following week for my six month check-up.

I have to catheter to urinate, which is a pain in the rear really. Just think what it’s like when I go out in public. I have to be sure to carry catheters & all that goes along with being able to catheter myself when I am in a public bathroom. I hate that. I miss the days when going to the bathroom was less complicated. Bowel movements are also an ordeal. I guess whatever damage is done in my spine affects that function to some degree, too. You can google “Neurogenic Bowel” if I remember correctly. There’s a pamphlet in *.pdf format you can download and it gives you ideas of how to cope with this problem. There’s two different kinds of bowel trouble, if I recall, but I couldn’t tell you the term for the other one. A really awesome nurse from KU University who worked in the rehabilitation area sent me a copy of the pamphlet which gave instructions for people with Spinal Cord Injuries (SCI) on how to manage bowel functions. Although it is dated material, it is very helpful. I also found it on the internet.

It’s hard to find support related to SCI’s. No one talks about it and many doctors, nurses, and assistants don’t know enough about it to be of that much help. I mean, WHO talks about what you have to do to go to the bathroom if you’re paralyzed or having those kinds of issues? I haven’t googled that stuff in a while….maybe there’s info out there now.

I think part of my problem is acceptance. I think I’ve accepted this stupid new normal of having issues from spinal cord damage, but in fact I’m still being a bit stubborn about it. But, maybe that’s a good thing. Determination. You need to have a lot of determination to survive chronic illnesses let alone symptoms like paralysis or close to it.

So – I’m basically the same as I was last time I wrote in here. I know there are changes, but nothing major. I live by myself in a retirement-like place. I couldn’t live where there’s steps or had a long way to walk from my car to my home. I am still able to drive, although I don’t go out a lot. My sister often takes me to my doctor appointments, but then I also drive myself to them.

I prefer to stay home for the most part. I’m usually very tired and I just feel more comfortable in my own familiar surroundings with everything I need right here. I do try to force myself to get out amongst people, though. That is very important. I used to go to two different bible studies during the week. Well, I tried–I missed them sometimes, too. I often am too tired to go or I don’t push myself hard enough. Recently, one group rescheduled their study so that it is at the same time as my regular study. so I’m down to only one study group a week. I volunteer to help count my church’s Sunday offerings which is only about once a month. I try to be social and am blessed I have some true friends.

I do experience significant pain and discomfort. It’s really indescribeable. There isn’t much I can do about the pain and discomfort I have. There’s not a medication strong enough to numb the pain/discomfort. In order to numb this pain, I’d have to be put completely out! My feet not only burn 100% of the time, but I have sharp pains and a stretching and pulling sensation in my toes or under my feet. I have similar sensations in my private parts. It’s maddening. But, there is nothing you can do about it; you have to focus on other things in order to cope.

It’s easy to turn within yourself when you get immobile and are in pain, but that is the worse thing you can do. Funny, I KNOW much of what I should and need to do; I can write it out here, but I can’t always DO IT in reality.

I was just thinking about that today. On Sundays my son and daughter-in-law along with their 3 year old son visit me. They come to church with me, we eat lunch together, and then they visit in the afternoon. Today after they left I considered how little interaction I spent with my grandson today. I didn’t feel well and I think I was focusing on that rather than my grandson. I made note to myself that in the future, I’m going to try to focus more on my grandson (rather than my pain) and see if I can conquer this battle. I always hate it when after my grandson leaves, I look back and realize what I missed out on worrying about my discomfort.

Anyway, it’s really “same ole same ole” here. My other son and daughter-in-law are expecting their second son in June. Their first son will turn two March 15th. Oh my gosh! That’s in just a few days! I am hoping to spend some time with them in June, God-willing. It will have to be a God-thing, as I don’t think I can handle the travel on the airlines by myself. We shall see.

This was more of a refresher/catch-up entry. I hope to do better. (I think I’ve said that before…)

Pain in the Gas

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

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

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

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

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

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

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

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

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

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

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

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

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

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