after 30 days in and out of hospital
getting to briefly know doctors, nurses and custodians
I come home and feel beatific
trying to love just about everyone
taking my medication regardless of aftertaste
gathering strength
becoming a day person instead of night owl
hoping to re-engage with the outside world
for as long as possible
lay back in the chair
with the picc line connected
first the hydration
then the anti-nausea med
after that the preparation
for the following week’s hospital stay
*
the above interrupted partway through
for prepared lunch:
sandwich chips peaches in syrup plus cookie
>
see the other patients in the room
the one next to me wants to live
his regular life in spite of the fatigue
hoping he’ll have extra years
from his time in the chair
connected to bags of liquid
which empty in thirty minutes
At the end of this post isa letter I sent to an oncologist whose department saved my life in the summer of 2021 at UCLA’s Ronald Reagan Hospital (I had a bone marrow transplant to treat multiple myeloma).
Sadly, 2023 is not the pandemic summer of 2021 and UCLA has recently changed to please restive, mask-averse, mask-optional staff when administering infusions of anti-cancer medication. God help us if this becomes future hospital policy.
surrounded by doctors and nurses
fighting the odor of transplant
faith in their assurances of extended life
many thoughts of what I’ve done so far
and all the things I’m looking forward to
once I become free to rejoin the world outside
The right arm is tightly connected to medication line
No side sleeping for obvious reasons
Time to relearn lying on one’s back
For just an hour or two at a time
Before disruption so nurses can check vital signs
Plus how much urine is inside plastic container
Try to close eyes again
As a loud flush emerges from bathroom
Be aware of early wake-up time
>
Repeat the above for 7 to 10 nights
watched some of it remotely
then saw some of its faces on, of course, Facebook
some have aged notably
one person now carries a blindness cane
two people I unfortunately remember from when I was younger
and starry-eyed and quiet and wanting to belong
>
some accepted me and others did not
and it didn’t help when I rowed the perceived Wrong Way
I was bullied—people said they were defending themselves
then I lost myself and responded with retaliation—
thinking I was standing up for myself—
plus there was anonymous hazing where others knew
but chose to be silent, perhaps thinking they were friends
or worried over offending a flawed totem they chose to enable
>
I was treated for Multiple Myeloma last year
and, upon transplant recovery, realized how big the world was
also how small today’s celebrated poetry scene is
(remote viewing when I checked didn’t go past mid-two digits)
>
I can’t do anything about a past that, thankfully, is now distant
I can only write hoping someone might read someday
I can watch remotely and appreciate what is good
but I am still painfully aware of who my friends aren’t
and I saw too many of them gathered in Facebook photos
on the grounds of the Los Angeles Central Library
Wake up mid-morning
Make a list of what is needed
Decide what necessities are nearby
Put on my tight fitting N95 mask
Erect a window for only necessary pursuits
The window must have exact proportions
Because there are only a few non-peak hours
>
Mid-afternoon , return home
With mild fatigue from two hours activity
Take my doses of maintenance medication
Think about tomorrow
Hope for a better year to come
Based on information I received last July when I had recovered enough from my stem cell transplant to go to the UCLA-sponsored hotel for further rest:
DISCHARGE INFORMATION
To leave hospital, ANC count of 0.5
Must be able to eat, drink, take pills normally
If confusion occurs, call doctor
Any new redness, swelling in right arm
Around PIC line, call doctor
Platelets (if minor cuts, I.e. shaving),
Hemoglobin (blood passed with bowel movement)
Call doctor if above occurs
Blood in urine, or when brushing teeth
No flossing, no aggressive brushing
Be careful when blowing nose
In case blood drips out
In case headaches occur,
Concern with bleeding of brain—call doctor
Avoid Tylenol, Advil, Aleve
Prevent infection by hand washing, sanitizer
Use shower glove for right arm until PIC line removed
Continue COVID-19 restrictions—visit outdoors,
If running errands, avoid peak hours
No dental work until cleared by doctor
At home with cats:
No being licked on face
And no cats in bedroom
Wipe down with antibacterial wipes
No vaccinations (six month average) until doctor says
Cleaning linens at home—average of once a week
Food Permitted:
Fresh fruits, vegetables (washed thoroughly)
Dried fruits okay with packed bags (small)
Take-out restaurants made to order (heated thoroughly)
No buffets, salad bars etc.
No deli food.
Frozen, canned food okay.
No prepared salads.
No prepackaged salads from Ralphs, etc,
Frozen dinner okay, cooked properly.
Pasteurized dairy (oat milk permitted)
No yogurt,
Eggs must be fully cooked
No raw food
No alcohol
Diet Soda permitted—bottles, cans
Ensure, Boost supplemental drinks
Oatmega bars may be okay, Kind bars too.
Exercise:
Can walk to and from campus
Or around block
Ask for the shuttle number if needed
This will pass
I’m glad to remain present
lots of counting going on
number of white blood cells
number of red blood cells
days until second bone marrow biopsy
weeks until stem cell harvest
week or so after that for stem cell replant
hospital stay followed by weeks in hotel
then a count of platelets determining recovery
>
hoping everything works out
so I can return home
and count the weeks until
a version of normal arrives
