Guest Posts from the World of Leukemia

So Tired...

So Tired...

Guest post day – where to begin?  There are over 600 blogs on the list.  This month’s Book Club selection is about a leukemia survivor.  So why not start there.  I found two posts by leukemia bloggers describing struggles that are familiar to all of us – fatigue and the dreaded “chemo brain”.

~ The first is by Mikha’el, a chronic leukemia survivor, who blogs at Cancer Survivor Inspiration…

I’m Tired

It’s been quite a while since I last wrote. Life has been keeping me going in too many directions and too much irritation from sinus issues since June…still no excuse. I guess I am overall tired. Living with this chronic disease stuff has taken many turns as I am sure others have been through themselves. Recent rounds of Rituxan brought great hope and after the first round feeling great, the second brought less than that. The timing of another sinus infection concurrently with treatment made things worse than I would have liked but I must keep going. I keep having feelings of being tired and not just fatigue tired but tired of many of the challenges that have come my way.Tired of…
  • Antibiotics
  • Doctor visits
  • Taking time off from work for medical reasons and not vacation time
  • Missing the opportunity for an extended vacation this summer in order to spend four weeks with an IV drip of Rituxan
  • Reading information on Leukemia and Lymphoma is hope for something new to consider
  • Being drained mentally and not feeling like having the fun I used to
  • Not exercising as much as I have done due to the excuse of being too tired
  • Working hard to eat a good diet in hopes of feeling better
  • Waking up and realizing that I have cancer
  • Going to sleep and remembering that I have cancer
  • Seeing people enjoying life while I think of what I could be doing for myself to prevent symptoms from occurring
  • Did I mention not having a summer vacation due to too much time spent from work for medical reasons?
  • Just plain tired of having chronic cancer

So what should I do? I keep telling myself to keep strong, fight this stuff, find hope in the blessings that I have been given, enjoy each day and my family for the love that they give, be thankful for the work that I am able to do but still I feel tired. I am sure that this too shall pass but I am getting a little impatient. I do want to write more often and have been working on a book idea I have as I feel that I want to share more of my experience. I often find myself thinking of what I want to do with my life…I guess I should just live life and let the answers unfold as I go. But tonight I am tired so I think I’ll get some sleep. Tomorrow is another day of hope.

from: Cancer Survivor Inspiration…

~ This second post is by Ronnie Gordon, an AML survivor (same as Evan Handler) who blogs at Running for My Life: Fighting cancer one step at a time

Coping with Chemo Brain

ronni1Last week, Jane Brody of the New York Times explored new scientific findings about chemo brain, the foggy thinking and forgetfulness that afflicts many cancer patients after treatment. Today,  she offered advice for patients in “Taking Steps to Cope With Chemo Brain.”
“Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment,” she wrote last week. “The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.”

In today’s story, her suggestions about coping including making lists and doing one thing at a time instead of multi-tasking as in the past.

Sometimes I experience that fogginess myself. The kids tell me, “You just asked the same question” or “You told us that three times.” In general I’m pretty high-functioning, as they say, but I have lapses. Sometimes I just shrug and say, “Chemo brain, sorry.” Or, sometimes I say, “I know I’ve asked you five times in a row. If I hadn’t asked you 10 times over the past two weeks or so, maybe I wouldn’t repeat myself!”

The question is: Can you attribute these things  to chemo brain, or are they a sign of aging, or just a quirky personality trait, or perhaps the kind  thing  that happen to most people on and off? (Once before cancer, after writing a story about early Alzheimer’s, I diagnosed myself with it, but let’s not go there.

The kids’ list of slightly dopey Momisms predates cancer, leading of course to the question of why they make fun of me, but let’s just assume it’s because they find me so endearing. One of their favorites came out of my mouth when I was giving one of many lectures about never let a drunk person drive you home, always call me, I will not lecture, etc. etc. It came out, “Never get in a car with anyone who drives!”

The other day, I asked Joe to move a soda can off a wood table, “before the moisture vaporizes.”

“Did you mean condense?” he asked. The word had escaped me. “Whatever, you get the idea,” I said. (As in, “Give me a break. Just move the bleepin’ can!”

Before cancer, I got lost while driving, even sometimes, I’m sorry to admit, when dropping one of them at a friend’s house where I had been many times. Today I space out sometimes too. So what else is new?

In any case, if you think you suffer from chemo brain, you might want to check out Brody’s suggestions. One of my favorites is making lists. I keep a pad near my bed and write down the names of people to call and things to do.

It’s actually something I’ve done for a while, again, even before cancer. Occasionally I wake up at night, turn on the light and write something down. Sometimes in the morning, I can’t understand exactly what I wrote. And of course just because you write something down, doesn’t mean you’ll do it. But it takes the pressure off your mind from worrying that you’re forgetting something. At least you see the list in front of you and the you can go from there.

from: Running for My Life: Fighting cancer one step at a time

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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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