Deludia & Malaise – guest post

Bob Kirkpatrick

What do I look for when selecting Guest Posts?  As I have said before, just good writing and compelling impressions.  First I go to my Cancer Blogs lists and try to select a disease category that I have not published from in while.  Today I happened upon “Multiple Myeloma”, a blood cancer.  I read quite a few interesting perspectives before I settled on Bob Kirkpatrick’s oddly named blog, Deludia.  Bob has been through the “wringer”.  He is a Vietnam vet who was exposed to “Agent Orange” in country.  It is thought that his myeloma was caused by this exposure.  And so now the Veteran’s Administration and Social Security try to deal with his illness and the accompanying disability.  If you’re interested in learning more about this painful and debilitating disease, read his “About” page.  “Malaise” is a bit of a rant, but an honest one.

Malaise

I’ve been losing energy for the past few days. There’s a little dark cloud over my head that I just can’t seem to burn off.  I’m living in a perpetual Groundhog Day where I keep repeating the same day over and over again. First of all, it’s not that great a day and second,  the prospect of continuing to live it again and again  is depressing me.

The VA doctors have pretty much thrown their hands up in surrender; their bag of tricks is empty. Radiation is on the horizon, but solely for pain control. It’s a win-lose situation because in order to stop the chronic pain in the worst areas, they have to kill all of the cells because our technology isn’t up to selective cell irradiation. Killing off bone cells means killing the marrow, and that means I have even less immunity to issues. The atrophy and deterioration of my body will speed up as blood activity wanes.

I realized the other day that it winded me simply going to the bathroom, and pain makes it harder for me to stand or walk for any length of time. Because of this, my musculature is shrinking and the mass of my bones is shrinking right along with it. Like becalmed mariners, fighting scurvy and lolling abut the decks with nothing to do invariably waste away, the same thing is happening to me. It’s a downward spiral.

It’s difficult to talk about this and not sound whining and woos-like. But this is a part of having Multiple Myeloma, the point to this blog.

While pneumonia or other infection is often the last straw for Myeloma patients, depression is a vicious facilitator on the sidelines; a parasite feasting voraciously on hope and confidence. It makes me seek more of the isolation visited on me by cancer. Like a mushroom, I thrive on segregation from the world, existing in a quiet darkness while awaiting the concluding harvest. It’s difficult be tenacious about life when living is little more than trying to find ways to pass time. I’m alone for abut 22 of 24 hours each day. That’s a lot of time to fill.

I have my robots and my Kindle, together with my television and computer they define my plane of reality. There is little to look forward to and much to be apprehensive about, so trying to think in terms of the future can be excruciating at times. One can’t help but include further physical deterioration in time passage thinking. Thinking of the future is like sitting down to eat cheesecake –right after you sprinkle it with shards of broken glass.

I could probably reach out and get more people involved with me. Perhaps that would help the bouyancy of my thoughts. But something makes me reticent to do that; I don’t want to feel like I’m inflicting myself on others. If they have the time and inclination, they will make it known. There’s more to it than just worrying whether I’m inconvenient for others but it is difficult to describe. Suffice to say that I probably could be less isolated if I did something, but I just don’t feel like doing it.

I have been giving thought to moving to a new city. A weird idea, perhaps. But maybe a new place that has things I want to see would help me avoid the self-reinforcing funk I keep falling into. Being depressed isn’t a new experience; I’ve been pretty depressed since they told me I was dying from this crap and there was little to be done. I think I know what it feels like to be in prison and on death row. Except they have bigger rooms and people to talk to and spend time with.

But no matter where I go,  I will need some kind of help because of my disabilities, and I end up back thinking again that I don’t want to inflict myself on others. Plus that, I keep being told how I’m not viable, so I don’t even know if I can make it through the set up of living in a new place, what with the deposits and credit checks that go along with relocating. Of course, I’m not rich and so the expense of moving is a bit daunting as well.

That’s depression for you. No matter which way you look, its a dark and gray-lighted place that offers foreboding more than welcome.  While depression may give a bleakness to forward vision, but it’s merely the frosting on a cake of reality.

from: Deludia

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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