August 06, 2012

lymphoma..Dad's ongoing journey

this photo was taken of Dad last week.  he is sitting in a sound booth to get his hearing tested.  he looked so funny in there so i had to come over and take a photo of him.  he is always playful when he has energy.  it makes people around him feel happy.  everywhere he goes he's still being his light-hearted self despite living with sometimes excruciating pain in certain parts of his body.

after 2 weeks of walking better, with only a cane, he fell and hit his head.  whenever he falls he cannot get up.  he is very heavy.  my husband has been able to help Marti, but when she's alone, she has often had to call a neighbor to help her.  amazingly he was fine, despite the big bump that formed on the side of his head.  he has fallen 10 or so times in the past 6 months but each time he has come through without breaking a bone or having any serious injury.

two nights ago he was taken by ambulance to the hospital.  he was complaining of a severe headache and was shaking uncontrollably.  when he wanted to go lie down, he couldn't walk again (he's been faring well with a cane recently).  i started crying when he was lying on the stretcher in a helpless state with oxygen flowing into his nostrils..

yesterday and today we went to visit him in the hospital.  his MRI was postponed until today because the procedure is done only in the mornings, and there wasn't enough time for Dad to be seen yesterday.  late in the afternoon the test came back negative so we are all relieved that there are no tumors or other complications occurring in his brain.  Dad ended up taking a nap but otherwise he was his witty self, smiling while watching the kids do their 'ghanaian accent conversation', and glad to watch the synchronized swimming on tv..

his headache didn't subside without a pain reliever until this morning.  he's been taking Revlimid (a chemo drug) for a week now.  the doctors are thinking the headache is most likely a side effect from the drug.  since he had shown no side effects for a week, we didn't automatically think that was the cause.  it took dad more than a month to make a decision to take Revlimid because of the concern about the possible side effects.   Dad finally decided to take it but only because the cancer specialist explained that this pill is a lot less potent than the actual chemotherapy he had before.  when he was undergoing chemo, he responded very well to it (except for becoming bald)..

while we were hanging out in the room yesterday, i noticed the lack of nutritional food on his tray.  i'm not a nutritionist or dietician, but i know that jello, white bread and soda are not going to do any good for Dad's body.  i felt myself starting to get a little infuriated about the way hospitals do not fully apply a nutritional component to the overall approach to well-being.  everyone goes to these gigantic institutions when they face a crisis to restore health and well-being.  where are the blueberries?!  where is the honey-sweetened herbal tea or the whole grain bed with dark green leafy vegetables, or at least a vegetable that isn't overcooked with most of its nutrients leached out?
today, when the dietician came in unexpectedly, i was handed an explanation of the renal diet Dad was on (even though he's had no complications with his kidneys to this point).  on paper everything looked fine, explaining the foods that are too high in potassium, sodium and phosphorous.  what he is able to eat, and what the hospital serves, however, is very far from a nutritious approach to well-being.  the white bread, canned chicken salad, sugar cookies, ginger ale, processed crackers, mayonnaise, margarine spread and sugar packets were enough red flags to make me wonder how anyone fares well in the hospital..

tonight Dad will have his blood transfusion and be released from the hospital tomorrow.  his journey with lymphoma continues, one day at a time..

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