Archive for March, 2014

“I look at the good. When you are relaxed, your body is always relaxed. When you are pessimistic, your body behaves in an unnatural way. It is up to us whether we look at the good or the bad. When you are nice to others, they are nice to you. When you give, you receive.” Alice Herz Sommer

March 26, 2014

A quick update…since my lovely anaphylactic reaction to the chemo on 3/12, trip to UCLA trauma via ambulance (vaguely remember good looking paramedics?!), I am now back in hibernation with .03 white blood cells to fight any infection. I know the routine: hibernate, mask, no raw fruits, no vegetables, and hose off any middle school child who lives with me! Tomorrow, I will go back to Hoag to check my blood again. In the meantime, there are the usual threats of antibiotics and lock down in hospital. I don’t fall for that trick, so I remain at home with no more episodes of anything to watch. I watched it all during the last 3 week lock down. This time we have no time for 3 weeks and I took a shot to boost the white cells equivalent to 10 shots, so I can exit the house asap! I MISS PEOPLE! (Okay, truth is that I only miss some people since I still like to avoid emotional vampires and I have zero tolerance for negativity.)

My organization has gone out the window, so I have time to fix that. My analysis paralysis continues of all my data of drugs. With the allergic reaction, I had to toss out a class of chemo drugs which used to work great for me. I was given a drug combo which I had about a year ago (even had it in Waikiki to be exact), but my bone marrow needs a giant break. I am really a chemo poster child. I know how to deal with all side effects of dozens (okay 20 different chemo combos) of drugs and manage to have a life. I cannot call it a normal life, but it is my life and I love every minute of it. So, you know when I read in Oprah magazine that a woman is giving up after only one year of chemo, I scream at the magazine, “are you kidding me?” Unfortunately, as a chemo poster child, I hear it all the time. I know how difficult the drugs are and yes, I would rather have hair and not have constant gastro issues. I would like to taste my food, but we eat with our eyes too!  I have lost track of how many weeks I went to Hoag or UCLA and lost track of the number of times I am asked the same questions about my nausea or lack of appetite. These maybe should be revised for me. Not sure what the series of questions I should be asked. All I know is that I am not 90 and don’t enjoy talking about all my bowel issues. I am living every day to the max, so I would like a new question/reward system.  I am still looking for a reward system or punch card system. Congratulations you win a FREE tshirt since you have completed this drug combo and answered 4 questions about nausea and diarrhea!

My last comment is about nurses! You know I love my nurses, but when I meet one who decides to tape my breast (my entire breast) when accessing my port, there is an issue. A small square inch of non adhesive tape is all I need. I am not expecting to do skin grafts on myself.  I want another nurse. If I tell you that I don’t want a nurse, I don’t want a nurse. What is with the questions or putting it on me that I am “difficult” or calling me PIA (pain in the ass). Call me what you want, but how about focusing on my experience? I am a professional patient approaching 4 years of treatment. Besides not getting a tshirt or a punch card, I have high expectations. I know my “stuff” and I’m not afraid of information. Maybe if you are afraid of telling me, you may want to choose something other than oncology. There are major warrior nurses! When I meet one that doesn’t meet my criteria, I am not sorry. Too bad too sad, but I have things to do even if it is hibernating. So, off I will go back to my hibernation zone with positive thoughts of white cells growing, growing….and on count down to exiting!

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The good, the bad, and the ugly: my weeks of hibernation and cancer job continues

March 9, 2014

Over the past 3 weeks, my body has been unstable with lack of immune system and now lack of red blood cells. My thoughts are foggy as I completed the 5 days of chemo. This will be followed by next week at UCLA.

My only way to sort my weekly thoughts is to categorize them. It may not make sense, but it is the best I can do now.

THE GOOD

  • The tumor marker going down: less cancer=less pain
  • Negu team: family, friends, acquaintances
  • The bakers who bake treats for nurses
  • 30 days until cruise
  • Visit from Katja and family
  • Hugs from Alex
  • Hugs from Jim
  • guardian angels at DJAMS
  • emails and calls from Alex’s teacher team at DJAMS
  • doctor team
  • hibernation allows for rest
  • I’m alive!
  • Living with cancer
  • the hope
  • music
  • living in Cali

THE BAD

  • White count going away=NO IMMUNE SYSTEM
  • Red cells being eaten=TIRED, LACK OF O2 IN THE BLOOD
  • Port clogged, needing “draino”
  • Jim being gone all week
  • Question of the week from Alex: Why is ovarian cancer not as “popular”? Answer: no one lives long enough to make it worthwhile for pharmaceutical companies, for someone to be a spokesperson, no famous person with ovarian, the excuse is that the battle is too challenging to find time to speak out
  • Learning to listen more, talk less
  • Tired of ongoing fight from all including me=life goes on, but my fight continues daily
  • unable to think beyond tomorrow
  • feeling alone
  • clinical trial delayed

THE UGLY

  • Tears
  • Nightmares
  • Alex hating cancer more than I do
  • hibernation equals loneliness and isolation
  • continued loss of cancer friends and acquaintances
  • the look of cancer: being beaten by symptoms of either chemo, cancer or both
  • annoyance and frustration brought about by living with cancer
  • the fear
  • the unknown
  • The puzzle: No answers or solutions