I really am feeling much better. I had a pattern of morning and afternoon
walks while staying at Brian & Bridget’s, and gradually I got so I could
walk faster (a more normal speed) and longer.
On Saturday Barbie & I walked around Jamaica Pond, a walk of 2
miles. Yes, I sat on the benches every
20 minutes or so, but it was great to be out in the sunshine and the crisp
breeze. I wore a mask while walking, and
if it was cold my nose would run and make the inside of the mask a mess. After the long walk, I did take a significant
nap, but gradually the feeling of fatigue has been receding.
A big thank-you to Brian and Bridget for hosting me in their
home for the last 10 days. Or the
portion of the last 10 days that I have been out of the hospital. My things and mess were still in their house
while I was back in the hospital Sunday – Tuesday, so they were still putting
up with me. I have to admit that I was
not a very entertaining guest, as I had my own issues to deal with. They certainly fed me very nicely, and the
private quarters on the 3rd floor were perfect. At first just climbing the stairs to the 3rd
floor would exhaust me, but by the end I had almost gotten used to it. They hosted a small party (6) for
Thanksgiving, and it was perfect. I
claimed saying the grace, and pointed out that 2 weeks prior to Thanksgiving
was the nadir for me. November 8th
+ 9th were when I had the blood infection, and I was wracked with
shivering or sweats and totally overwhelmed.
Once again my eyes leaked while I said I personally had lots to be
thankful for, and that I appreciated all the help – both from family and from
the professional staff at the hospital – that pulled me through.
I am now on an antibiotic regimen of Vancomycin every 12
hours. Instead of a pump to deliver the
medicine, there is a small bottle with a rubber balloon inside of it. The bottle resembles a baby bottle, just
shorter. Here is a full one, before it
is infused:
I hook the tube to the left that has a blue thing at the end
up to a tube coming off my PICC line. The
bulge at the top of the bottle slowly deflates over the course of an hour, and
the medicine ends up inside me. Just
think about it: a balloon as a medical delivery device.
One of the reasons Dr Levine gave for allowing me to return
home is that my blood counts look very good.
He stressed that I still need to be careful because my immune system
lacks antibodies to most diseases. Some
of those will be reintroduced by vaccines, but others just have to be built up
over time by exposure to real life. But
I certainly need to be careful early on while the immune system is still finding
its legs. Here are the latest blood
counts:
The first two graphs bounce around quite a bit after
November 11. That is because they gave
me injections of Neupogen to stimulate the production of white blood
cells. That is the same drug they had me
inject myself with leading up to the harvesting of my stem cells in
October. Clearly I respond quite well to
Neupogen. Once, they saw a positive
response, they eliminated the shots. The
result was a drop in the white blood count.
Then when I came back in the hospital on Sunday, 11/18, they decided to
boost my numbers by another Neupogen shot.
Hence another spike up. My final
numbers are my own cells, without any help.
Not as spectacular as the Neupogen-enhanced numbers, but solid enough to
come home.
They train you to administer your own drugs while you are in
the hospital, but they don’t really trust you to do it right. So part of the home-dosage process is a
visiting nurse who checks that you are doing it right. She also checks your vital signs and replaces
any dressings that have gotten dirty or messy.
My visiting nurse while I was at Brian & Bridget’s was Kathleen
McCarthy. Could that be a Boston Irish
name? Here is Kathleen getting ready to
change the dressing on my PICC line. I
must roll over on my PICC line is a bad way when I am sleeping, because
frequently it becomes covered in blood overnight.
A different nurse from a different visiting nurse company
will perform the same functions here in Stow, since Kathleen’s company does not
extend out to Stow.
The 3 rooms I will inhabit on the second floor here at home
are incredibly clean. A
LotsaHelpingHands crew of Madge Evans, Tricia Woods, Jane Epstein, and Barbie
went to town on Sunday. My office has
never been as dust-free as it is now. The
boys’ bathroom has been thoroughly scrubbed and disinfected. Andrew’s bedroom, which will be my bedroom
until further notice, was cleaned to a fare-thee-well. They removed the mattress and box spring from
the bed frame, which revealed YEARS of accumulated junk and dust. All that was vacuumed out, swabbed down with
antiseptic Clorox wipes, and put back together with specially cleaned linens. The plan is to put a gate on the end of the
corridor that connects to the rest of the house so that the dogs stay out of my
area. I can be in the same house as the
dogs, but I am to keep my distance.
Once again, I am incredibly thankful to be home. I am blessed to be feeling well. Clearly I am lucky enough to be on the mend. Furthermore, I have a good prognosis. I feel like I am coming to the end of the
tunnel, and the sun is shining out there.
I hope that I have very little news to share in the next few weeks. As Dr Levine likes to say, boring is good in
the Stem Cell Transplant business. I
hope I have no setbacks or attacks of idiocy to report. But quiet times on the blog should not mask
the fact that I am incredibly grateful to have made it through the Stem Cell
Transplant. It was a near-death
experience, and it makes me appreciate the life that I have all the more.
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