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HIV/AIDS Blog Central

Life Is a Death Sentence

By Brooke Davidoff

March 20, 2013

From the time we're born we begin to die. We put bad things in our bodies. We smoke, drink, eat junk food and internally think if no one knows you snuck a candy bar for breakfast it's okay.

We get older and realize we want to live. As much as we don't like going to work, paying bills with most or all of the money we earn, we like living and complaining about doing it. Read Facebook, it's what we do. We complain about being sick, car crashes, work, relationships, traffic, food, everything you can imagine.

But rolling over and dying isn't something were okay with. We have families and friends we're NOT done being. Your mission is NOT complete, whatever it is. Each one of us has our own goals and ambitions, whether we are 15 or 75. We don't think were done.

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Watching my 93-year-old grandmother Gertie die a few years ago, we all knew she was not ready to let go. She went peacefully; my mother, aunt and I were in the room when she died. But she was not DONE living. I think she knew she was dying.

With my father Marty he had just turned 60, and that was a different story. I'm not sure what he knew after his motorcycle crashed into a truck and burst into flames. Did he quickly think to himself "Oh Shit!" Do you have time to comprehend LIFE when something happens so quickly? When you're put into a medicated coma after an accident like that, is your brain still working? Can you hear and comprehend doctors and family members in your hospital room talking to or about you?

And yes, I have this AIDS thing, I think how I don't want IT to kill me. I'd like something quick and painless to take me out. Or just quick would be nice. My uncle Fred died of cancer only 2 weeks before my dad died from his accident. Our last conversation was about Fred. He had been on hospice for a few weeks, we talked about how hard that must have been for my aunt Carole watching and waiting for her husband to die. My dad mentioned he never wanted to be that way. He hated or feared hospitals and doctors.

My father-in-law told my husband and me, about a month ago, that he was diagnosed with stage 4 Mantle cell lymphoma (MCL). I began researching MLC since my cancer knowledge is limited to what my family members have died of; none of them had that kind.

From what I have been able to find:

MCL is one of the rarest of the non-Hodgkin's lymphomas (NHLs), comprising about 6% of NHL cases. There are only about 15,000 patients presently in the U.S. (The prevalence seems to be somewhat higher in Europe.)

Median survival times were about 3 years, but are now estimated as approaching 6 years for new patients.

MCL is a subtype of B-cell lymphoma, due to CD5 positive antigen-naive pregerminal center B-cell within the mantle zone that surrounds normal germinal center follicles. MCL cells generally over-express cyclin D1 due to a t(11:14) chromosomal translocation in the DNA. More specifically, the translocation is at t(11;14)(q13;q32).

Essentially, it is an abnormal break and subsequent translocation in a gene that causes the cells to divide too early before becoming capable of helping to fight diseases. In addition, the cells do not die as they should and therefore accumulate in the lymphoid system, including lymph nodes and the spleen, with non-useful cells eventually rendering the system dysfunctional.

Above info is all from Wikipedia.

We told Myles that Papa has an owchie to explain why Keanen had been so upset for about 2 weeks. Myles painted Papa a get well picture, and now when he talks to him on a real phone or a 2-year-old imagined phone, he asks if Papa "feels better," if he "needs a Band-Aid" and Myles tells him to "drink water."

Ken my father-in-law will begin chemotherapy in the next few weeks from what he's been told. "I need you to understand there is no cure for my cancer at this time. Since I have the slower growing type I will be around for a while, and hopefully die from something else," he said. We see eye to eye on that for sure.

I also don't have a cure and hope to die from something else. I am thankful the medical world has made it so my life is not much different these days then it was before I was diagnosed. Yeah, I take a few pills a day, I go to doctors for blood labs, but that's about it.

When it comes down to it I'm torn between wanting a quick unexpected death, or one that gives you a few years to get used to it. One shocks your family instantly to their core and leaves them with little closure, whereas with the other you have time to get your mind ready to DEAL with the loss. You watch them go to chemo/radiation, their hair falls out, they can't breathe, they can't go to the bathroom on their own, and they are fed through a tube. You eventually want them to stop hurting so bad you're almost mad they are still alive. You wonder why you can put down your cat or dog and you can't do the same for your human loved one.

When Keanen got the call I was far less emotional than I should have been, I guess. Had I got a phone call from my dad that he had so many years to live, rather than a call to fly out to him and unplug him, maybe I would think differently. I saw this as an opportunity for them to FIX their relationship. To call each other a few times a week and really talk to each other, to get to know each other, to make an effort and make these years count.

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See Also
TheBody.com's AIDS Memorial
More Viewpoints on Grief, Death and HIV/AIDS

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Voice of ONE


Brooke Davidoff

Brooke Davidoff

Brooke was diagnosed HIV positive in January 2010 -- two months married and 11 weeks pregnant with her first baby -- and has already begun to educate others about HIV. She lives in Seattle, and her poetry has been featured on TheBody.com. Her son was born on July 15, 2010.


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