The long-awaited port
I finally got that port I’ve been pondering. It was implanted just below my right clavicle during a surgical procedure at the beautiful Long’s Peak hospital (Longmont) on Tuesday, January 9. All went well but I had to have 2 units of platelets before I could have the surgery. Funny thing was the nurse commented on how low my platelet count was, and I responded that it was the highest it had been since all this started. The doc said I could use the port right away, so had the infusion nurse access it for blood draws the next day, as well as for a 4-hour, 2-units of whole blood infusion the day after that. The area above the port where the incision was made is super sensitive and sore, though the port appears to be just fine. By last Friday when it was time for another blood draw, I just felt that both the tender area and I needed a break, so the port won't be used again until Monday’s blood draws and magnesium and electrolytes infusions.
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| Long's Peak Hospital (Longmont) is only 6 years old. They had the earliest slot open, otherwise I'd still be waiting to have the port inserted. |
Blood chemistry
Speaking of infusions, I’m still getting blood draws 3x/week, which are
currently scheduled through May 3! Nearly all are still occurring at the UC Health
Cancer Center on Harmony, which sadly many of my local friends are familiar
with. I usually get the results within 20 minutes, so they have me wait to see
if I need an infusion that day or not. If it’s a shorter infusion that doesn’t
need to be special-ordered, I can often get it the same day. Whole blood needs
to be irradiated and lymphocytes removed, so usually isn’t available until the
following day. Plus, the infusion itself is a 4-hour process. So far, I’ve had 4 units of platelets, 4 units of whole blood, 1 unit
of magnesium and 1 unit of electrolytes. Monday I’m scheduled for magnesium again.
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| Each reclining infusion chair has these controls. Joel said my infusion days count as "spa days," but I insisted that if there's no foot bath, it doesn't. |
Joel is keeping a spreadsheet of all the test results (of course he is! – he’s the spreadsheet king!) and is now tracking 35 different tests. The most critical are white and red blood cells, and platelets. Specific data on magnesium, potassium, bilirubin, ionized calcium, and more, are monitored closely for many reasons, and some are to make sure my liver and kidneys aren’t being damaged by the cocktail of drugs I’m taking. Interesting to note in the graphs below when the infusions of blood and platelets occurred.
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| We've not figured out why my WBCs increased after Christmas. Hopefully they will again soon. |
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| This shows the uptick of platelets after infusions on 12/20, 12/30, 1/5 and 1/8. |
Since my WBCs were so low this week, they’ve now decided to add an anti-bacterial prophylactic med (levofloxacin) to my daily regimen which already includes 4 anti-viral pills/day, and 4 immunosuppressive pills/day, along with the Promacta® (for low platelet counts), a magnesium supplement, and my usual high blood pressure med. The scary thing is that this newest addition is so powerful it’s used to treat PLAGUE and ANTHRAX!! Good god – and I have to take this every day for how long?? My poor gut! So of course, now I’ve added a daily pre- and probiotic! I’m just hoping they don’t add an anti-fungal, too. Basically, I have absolutely no immunity to anything, at the worst time of year when EVERYTHING is going around. So hopefully the weather will warm up enough and the wind will stop blowing so I can go walking outdoors with my friends again – soon!
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| My friend Fade lent me this book, along with several others. And my friend Anne highly recommends the mini-series on Apple+. We'll have to watch it after I finish the book. |
The healing power of friends and chicken soup
On a much more positive note, I’d like to give a shout out to my neighbors
and friends who’ve dropped off or shipped goodies to us. It’s been a perfect
mix of skin care products to make me feel good, books to read, movies to watch,
coloring books to occupy my time, chocolate to indulge in, Christmas
decorations to brighten up the house, all kinds of food, including homemade jams
and sourdough bread.
I have a friend who lives in NM who asked what she could do for us. She’s
Jewish (I was born in a Jewish hospital, went to a Jewish kindergarten, and
spent a year of junior high attending bar- and bat mitzvahs) so I asked
her for a chicken soup recipe. I asked for this because I KNOW there’s
something about chicken soup that’s amazingly healing. Back then there
was a girl in our “group,” Patti, with whom I sometimes had a difficult
relationship with. (Now that I look back on it, I’m really not sure why – but I know it was me, not her.) I’ve never really been one to get sick – even common
colds seem to avoid me (tell that to my damn aplastic anemia!) – but one time I had a terrible
flu and was laid up for days. Even though Patti and I weren’t always close, her
mother cooked up a batch of chicken soup and dropped it off. I quickly
recovered and will ALWAYS attribute it to Patti’s mom’s soup! So, much to my
surprise, a couple of days after I asked my NM friend for a recipe, this showed
up, packed in ice, all the way from NYC! (A place where I spent a lot of time
in the 1970s, living just 45 minutes away by train.) Katz’s Delicatessen is both
locally and nationally famous for its Jewish classic offerings, from pastrami
sandwiches to noodle kugel. It’s been in business for over 135 years, and Ava
figured, if she was going to send chicken soup, she was going to send a
classic!
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