-
Recent Posts
Archives
- April 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
- July 2012
- June 2012
- May 2012
- April 2012
- March 2012
- February 2012
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
Categories
- Acute GVHD
- Back pain & fractures
- Bad reactions to Meds
- Chronic GVHD
- Going Home
- Healing Process
- Home Challenges
- Hospitalization
- Immunocompromised Issues
- Mobility Issues
- New Normal
- Possibility of dying
- Post-Transplant Issues
- Post-Transplant Updates
- Pre-Transplant Updates
- Relapse issues
- Side effects of long term steroids
- Tips & Tricks
- Transplant Updates
- Updates
Category Archives: Acute GVHD
Hearing trickling back and Update – 30 June 2012
Strangely enough, today, I was watching a movie and kept hearing a faint whistling vibration on the left side of my head. I thought they were noises coming from outside the window. Annoying as it was, I realized that sound was slowly trickling back … Continue reading →
Posted in Acute GVHD, Healing Process, New Normal, Possibility of dying, Relapse issues, Side effects of long term steroids
|
Tagged cll, CT Scans, exercise, fear of dying, fear of GVHD, fear of relapse, fear of the unknown, healing from cancer, hearing coming back, hearing issues, life is good, liiver issues, living with cancer, Lung Infection, lymph nodes, Marie-Chantal Marchand, new normal, remission, Richter's Syndrome or Transformation, spleen issues, tapering off steroids, TP53 with 17p Deletion, x-rays
|
Leave a comment
Soon, I will be home – 1 May 2012
“You’re pink!” Those strangely enough were fabulous words to my ears a few days ago. My Fellow (and by this I mean the Fellow, Dr. Gupta, who has been following me for months now), came in and exclaimed that I … Continue reading →
Posted in Healing Process, Chronic GVHD, Possibility of dying, Acute GVHD
|
Tagged Acute GVHD, adapted bathroom, anemic, assisted walking, atrophied muscles, bilirubin, blood transfusions, chronic GVHD, DNR, dying, GGT, Graft-versus-Leukemia/Lymphoma, healing, jaundiced eyes, leukemia, life, liver, liver enzymes, living, lymphoma, physio therapy, recuperating, remission, rest, steroids
|
8 Comments
My Daily Routine – 21 April 2012
Being bed-ridden makes me a sitting duck. I seem to have very little control over how my time is allotted throughout the day. I think people assume I just sit in bed and have nothing to do. Not so much! … Continue reading →
Posted in Acute GVHD, Bad reactions to Meds, Chronic GVHD, Healing Process, Possibility of dying, Post-Transplant Issues, Relapse issues, Side effects of long term steroids
|
Tagged Acute GVHD, bad-pans, basic needs, being told you will die, bilirubin, blood work, care-givers, chronic GVHD, cll, dry eyes GVHD, dry mout GVHD, eating, emotional turmoil, energy sucking, fatigue, friends, GI Tract issues, going home, hallucinations, healing, human error, interruptions, leukemia, life threatening, life threatening infections, liver, long-term steroids effects, Lung Infection, lymphoma, Marie-Chantal Marchand, mariechantalmarchand, meals, meds, mobility issues, napping, not a vacation, not lounging around, occupational therapy, on-going Chronic GVHD, physical challenges, physio therapy, pills, relying on nurses, relying on people for basic needs, resting, Richter's Transformation, self-conscious, sleep deprivation, sleepless nights, SLL, specialists, steroids, time, TP53 with 17p Deletion, visiting, visiting friends
|
1 Comment
Severe Multiple-Organ ACUTE GVHD – Part 6 – LIVER GVHD
ACUTE LIVER GVHD Ok, here is the biggest, most serious, most life threatening issue for me. Now a ‘normal’ liver has a Bilirubin level of approximately 15. My levels have climbed as high as in the 140’s. This is very … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 5 – STEROID MYOPATHY
ACUTE STEROID MYOPATHY Mobility Issues & Fluid Retention In early March I began noticing that I was having difficulty getting out of lower chairs. I was beginning to lose balance and fell a few times going to the washroom, My … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 4 – LUNG INFECTION
LUNG INFECTION In order to be able to deal with all the various ACUTE GVHD issues since early February, many high dosage of steroids and meds were given. Unfortunately, lots of different steroids at high doses also means that I … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 3 – GI TRACT GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. ACUTE GI TRACT GVHD Just a few days before I came into the Emergency, I began experiencing severe diarrhea which I concurred was probably due to the … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 2 – MOUTH GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. ACUTE MOUTH GVHD The Mouth and Throat issues began gradually around mid-January 2012. The Dry Mouth and Throat Chronic GVHD which I had been able to adapt … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 1 – SKIN GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. Here is a description of ACUTE GVHD. For detailed information on each type, please see each individual postings. It would have been too long to include them … Continue reading →
Whom am I when that is all there is? – 11 April 2012
When you are bed-bound, nowhere to go, no one else to think about, whom are you really? When your ego is completely stripped away, your dignity is out the door, you need help with everything, what is left? I have … Continue reading →
Posted in Acute GVHD, Chronic GVHD, Healing Process, Possibility of dying, Post-Transplant Issues, Side effects of long term steroids, Tips & Tricks
|
Tagged alone, answer phone when convenient for me, appreciative of all they do, be myself, bedpan, bedpan procedure very exhausting and time consuming, being alone, being human, being selfish, bladder infection, blood infection, brain stll works, catheter, Dalai Lama wisdom, Deepak Chopra too many tweets, diapers, doing things for myself, dying, E-Coli, existential questions, family dying, friends passing away, Gut GVHD, healing, infection from within, Infections, IV lines, lack of control, lack of patience right now, laughter, letting go, Liver failure, love my friends, Lung Infection, mucous infection, no dignity, no ego, no mobility, no patience for trivial issues, PICC line, possibly dying, rely on people for everything, someone else do everything for me, someone else move my body in bed, someone else move my limbs, stop being what people need me to be, stop pleasing people, stress free environment, stress free room, treating myself to what i need, treating myself to what i want, type with one hand, washing me, what does life mean for me, whom am i, wiping me
|
10 Comments
