Worst Day Ever – guest post

I debated on whether to publish the following post as this weeks Guest Post.   It is written by the wife and caregiver of Pete who is diagnosed with multiple myeloma.  Multiple myeloma is a cancer of plasma blood cells.  It will affect over 20,000 Americans this year.  The five-year survival rate is steadily improving but has reached just between 35% – 40%.  (Click here for more information: Leukemia & Lymphoma Society – Myeloma)

Myeloma-Lymphocyte_Dev

Beth has opened herself up to the vulnerability and raw pain of caring for someone with a serious cancer.  As her husband struggles with complications of his disease, she is coping not only with that but also with life’s multiple other challenges.  Somehow she still finds the strength and courage to continue writing.  Her posts are very personal notes published on a very public media.  But what I have seen of this cancer blogging community is that at its very essence it is supportive and caring.

What Beth writes about is no doubt personally painful. It is painful to read.  But it is instructive in reminding us of the price and sacrifice that love and compassion sometimes demand.  Most cancer blogs are written by the person with cancer.  And cancer has a way of making us all egocentric. This particular post sheds a searing light on the pain and plight of caregivers everywhere.

I know that readers will extend to Beth and Pete that empathy and understanding that we ourselves have so gratefully received.  Beth blogs at Pete’s Blog

This has been one of the worst days ever.

Pete is not feeling well at all. He is moving away from me and withdrawing. He is depressed when I am gone in the mornings to work. He is depressed that he has not been able to go home. He is depressed that there has been such a delay in getting treatment and doesn’t know what will happen.

Right after we got to the clinic this afternoon I received a message on the cell phone. It was from our pet sitters that said they tried to email us but our email service was disconnected again by Cox on Monday and even though I have put a lot of effort into trying to work with them I don’t seem to be getting anywhere.

We have had previous problems this year with our property in Roanoke and now the City is after us again. I just couldn’t take anymore! I really fell apart at the clinic. We are losing control of everything and there is no way that we can make people understand our situation here.

When you tell people that you have been here for the past year and non-stop for going on five months now, they don’t seem to believe you. They think “cancer” is something that you treat with chemo and/or radiation or cut out the tumor. Myeloma does not fall into that category. There is no cure and it always has to be fought.

I spent the afternoon on the phone between several departments and learned that while I have sent certified mail, letters, and emails NOT A ONE were in our file. The person that had been working with us has gone to Iraq and over all the months that I kept in touch and documented everything, there was no record of any of it. Our letter copies are at home and we have no way to get into email and see sent items either on the Internet or on our computer at home.

I left messages and made call after call and got no where. I tried calling Cox too and had to start over again from everything I had just been told and none of it seemed to be the same as it was two days ago when I was promised service reconnection.

The one piece of good news is that we received a call after this that the drug we’ve been waiting on has been approved and we will come sign approval on Monday and see the doctor and begin on it on Tuesday.

We were also told that we cannot take this drug at home since it is experimental and has to be dispensed here at UAMS. No sight of home anytime soon and now things are far worse there than ever.

I can’t take anymore. I can’t keep doing this. We’re losing hold of everything and just living in a hotel is getting old with not much on t.v. and feeling trapped in this one room. God, please help us.

from: Pete’s Blog



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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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