Wednesday, January 31, 2024

10: Bad news, good news: the food and drink edition

Hair

Bad news: My hair started falling out last week. Not in big clumps or anything, but enough to be alarming and I’m hoping that it slows down sooner rather than later. The weird thing is after going through all my medication paperwork combing (see what I did there??) through the side effects, all I could find was “excessive hair growth” as a possibility with cyclosporine. One person I talked to (in her 70s) said she had to start shaving her legs again. But my doc thinks it’s probably from the combination of low blood counts on all levels and for such an extended time.

Good news: At first it was a shock, but after being around so many chemo patients on the Cancer Center 2nd floor it’s actually a pretty normal sight there, and interesting to see how many different ways people are dealing with it. I know I don’t have the facial bone structure to pull off a classy look, so I may have to just go for wild and crazy if that time comes – we’ll see. We had a woman at work a long time ago who lost her gorgeous long tresses, and chose to go with purple, pink and shiny silver wigs until her natural hair grew back.

Blood counts

Bad news: CBC (complete blood count) and CMP (complete metabolic panel) results were rather poor, so I ended up getting 2 units of platelets, 1 unit of whole blood and 1 unit of magnesium.

Good news: Joel sat with me through the longest infusion and we re-learned how to play backgammon (he won 2 of 3 games), and finished my third book of the month. These are all things I never took the time to do before the diagnosis.

Chicken Soup redux

Bad news: well, there just isn’t any bad news when it comes to chicken soup!

Good news: Back in post #8 I mentioned a high school friend, Patti, whose mom brought me chicken soup one time when I was sick. I’m friends with Patti on facebook, but we’ve had no direct communication for 49 years – seriously! When our mutual friend, Anne, told her what was going on with me, Patti read the blog and insisted on making and sending me her chicken soup – all the way from NJ! So last Sunday she spent all day cooking, and on Monday morning shipped off the frozen soup on dry ice. We just had it last night and holy smokes, it was the best chicken soup I’ve ever had! So, I firmly believe that today’s slightly better blood test results (no infusion needed) were the result of Patti’s “Jewish penicillin.” She made enough for us to have 2 more meals of it, so I’ll be conducting a non-scientific study to see if that theory continues to hold true.

Patti's chicken soup with Joel's inaugural loaf of sourdough
 (more on that in the next update)

More non-alcoholic alternatives

Bad news: I know that Dry January ends tomorrow but looks like we’re going to have a dry 2024 from the sound of things. With that in mind, we continue to explore alternatives. Our attempts to find decent de-alcoholized wines have not yet borne fruit. So far, we’ve tried a rose and sauvignon blanc from Giesen Group Winery of New Zealand. We still have a Merlot to try, but I’m not holding my breath. Maybe it’s my taste buds that are messed up from all the medications, but to me the sauvignon blanc tasted more like lemon juice than wine. (I ended up using it in a recipe that called for both dry white wine and lemon juice.) The rose was slightly more passable, but I could only drink it while eating a very strong, soft cheese at the same time. Joel was a bit less critical, but still – nothing beats a good wine! On the other hand, my friend Lisa understands my love of both good wine AND Star Trek and suggested this, though definitely not non-alcoholic:

Klingon blood wine
available here

Good news: At the risk of sounding like a couple of alcoholics, we also love good tequilas. So, when we heard good things about Danny Trejo’s tequila alternative, we ordered a bottle from California. The first thing we noticed was the aroma – definitely nothing like tequila. Then I mixed up a small batch of margarita mix, added the “tequila” and still, all we could smell was that odd smell, completely destroying the concept of a margarita. Luckily, while buying NA beers at Wilbur’s in Fort Collins, an employee pointed us to Ritual – Zero Proof Tequila Alternative. It lists its ingredients as, “blue agave flower, Mexican lime, tropical guava, cracked sea salt, black peppercorns, capsicum fruit, prickly ash, green bell pepper” and prepared with charred oak and mesquite smoke. Though it doesn’t exactly taste like tequila on its own, the aroma is somewhat reminiscent, and the bottle clearly says it’s meant to be used in cocktails. I mixed up another batch of margaritas using Ritual, and they really were quite decent!



Here's my recipe:
2 oz fresh lime juice
2 oz tequila alternative
2 oz non-alcoholic orange “liqueur” (delicious – recipe here)
2 oz (or more) sparkling water (your choice of plain or flavored. I found a Safeway brand labeled “margarita” which was pretty good)

Of course, I used blood oranges to make the “liqueur” – couldn’t hurt, right??

Tuesday, January 23, 2024

9: Rough ride

“Sometimes it’s just going to be fucking hard.” (Loni G)

I was going to post an update last weekend but just found things a bit overwhelming. So, I’m going to be brutally honest here – this past week or so has been rough, and finding the bright spot I usually like to end the update with has been difficult.

On Wednesday, I was prescribed a third daily prophylactic (an anti-fungal) because my WBCs and neutrophils are still in the toilet. I picked up the RX, but when the pharmacist warned of serious complications (irregular heartbeat in particular) because of all the other meds I’m taking, I chose not to start taking it on a Friday because I didn’t want to deal with complications on a weekend. Silly me – there were other things to worry about!

The day before my legs had started swelling, so I was told to keep my feet elevated as much as possible and to start wearing compression socks. (I actually don’t mind wearing compression socks, so went ahead and ordered some fun ones from Amazon. Plus, they keep me warm.) Then on Friday I got home from the blood draw and running errands, went to the bathroom to wash my hands and saw that the right side of my face was swollen. (That “fat face” I’d worried about when taking the steroids early in the game never came about, but now – here it was.) I left my oncologist a voicemail, then sent them a picture. At 2:30 I get a call from someone in the office wanting to know how quickly I could get to a hospital to have an ultrasound, and how far I was willing to travel. At 2:50 I got a call that they could get me in at 4:00 into the UC Health hospital in Greeley – could we make it in time? Minutes later we’re in the car headed east. Even though an accident and attendant looky-loos delayed us, we made it, arriving at the front entrance at 3:50. Seems they were seriously concerned about a blood clot from my newly - installed port. Good news/bad news - no clot was found.

The next morning (Saturday) both sides of my face are now swollen. Of course, it’s a weekend. I called the on-call oncologist because my med paperwork warned that swelling of the face can lead to blocked airways. She advised I go to the ER for more tests, including a CAT scan. So, off we go to the PVH ER - again. Four hours and many tests later, results are all negative so we go home. But at least I’m not worried about my airways closing up. (Small wins – we take them wherever we can find them.)

On Monday I get a message from the doctor’s office checking on the swelling, and I end up telling them about some other side effects I’m starting to experience (I’m really starting to feel like shit at this point.) I tell them I haven’t wanted to start the anti-fungal, and get a stern response that if I don’t take it and do get an infection, it would be very difficult to treat and could be very serious overall. In fact, infection is the leading cause of death for people with AA. So, now I’m on yet another med. Total: 8 medications, 6 daily intervals, 16 pills/day. And I was the person who barely remembered to take my daily vitamins!

The Phoenix

Here is the bright spot. I have an artist friend, Vickie Krudwig, (https://www.harmonyhousestudio.com) from whom we’ve bought quite a few paintings. This is how she describes her art: “Harmony, Peace, Love, and prayerful meditation are what I hope art lovers will feel when looking at my art. Whether my art is impressionistic or abstract, it’s purpose is to heal hearts and transform the spirit.” So when she sent a note out to a few of us that she was cleaning out her studio and was looking for new homes for a few of her unsold pieces, I gasped when I saw this one…


She calls it, “Morning Gathering” and is about how all of us are connected to the earth, but I saw it as my phoenix – my talisman for this journey. To me, it signifies rising from the fire, a rebirth, and all the small figures in the piece are all of you who are supporting us as we make our way to recovery. (Thank you, Lauren, for that incredible insight.) Vickie says that her paintings are “… meant for certain individuals, who connect intimately with the paintings. I like to think my paintings find their owners!” And the moment I saw this piece, I knew immediately that it would be an important part of our lives.

Saturday, January 13, 2024

8: A port, blood chemistry, new meds and chicken soup

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. 

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.

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.

We've not figured out why my WBCs increased
 after Christmas. Hopefully they will again soon.

You can see when I got whole blood in the hospital on 12/20
and again on 1/10.

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!

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!



Saturday, January 6, 2024

7: Everything is New

New meds

I started my new meds last week which are supposed to slowly begin the bone marrow rebuilding process. It’s a relatively new, very targeted medication called Eltrombopag sold under the trade name Promacta® by Novartis. When my docs first came up with the treatment plan the folks behind the scenes immediately got to work applying for financial support through the Novartis Foundation. (You know those tv ads that say, “You may qualify for free or reduced cost medications?” Come to find out, it’s a real thing.) Since we’re both retired with an income solely dependent on Social Security at the moment, the folks at UCHealth were able to make an application for us for full financial assistance, and we qualified!

Welcome packet from Novartis for Promacta®


New schedule

It feels like I have NEVER had such a full calendar, even when I was working. Unfortunately, everything revolves around blood tests and unknown infusion needs. On the other hand, everything is relatively close to home – all within a 40-minute drive, and no need at this point to go to Denver. Most everything occurs at the UCHealth Cancer Center on Harmony in Fort Collins. Once in a while we run into someone we know there. It’s an interesting encounter as we look each other in the eye and recognize the unspoken truth behind our presence in that space.


New experiences

I have now officially been kicked “upstairs.” Up until now, blood tests were being conducted at a variety of labs depending on where we could get appointments over the holidays. Now, all of my blood tests and infusions are taking place on the second floor Infusion Center at the Harmony Cancer Center so I can see some sort of routine becoming part of our future. I had my first longer session yesterday… blood tests at 9:30, results by 10:00, then magnesium and platelet infusions ordered, delivered and administered by noon. I finally got out of there around 2:30 and found the experience to be both enlightening and humbling. By midday, every seat was filled. Most of the patients there are getting chemo or related infusions and most of them seemed to be long-termers, meaning they knew the routine and come prepared. They arrive with bags of comfort items – blankets, headphones, books, laptops, food, phones, chargers, etc. Some have support folks, others are alone but know the routine and settle in pretty quickly. There’s conversation between some patients; some lively and others muted. The nurses and staff are incredibly upbeat, with constant smiles and offers of help. There’s a Spanish-speaking patient who's visited by Spanish-speaking translators and staff. There’s a very loud guy talking about his personal miracles to another guy who’s just finishing his very last treatment. There are two women playing a new card game. There’s a volunteer handing out warm blankets and delivering lunches, and the nurses are all thanking the lady next to me for bringing in Mitchell’s donut holes. It’s a microcosm of a world most of us will never be part of, but the reality is that we probably all know at least one person we love or care for who has, or is now part of this world of “the second floor.”

New beers

Joel and I are serious beer lovers, going all the way back to volunteering at the third and fourth Great American Beer Festivals in Denver together in 1985 and 1986. I have a total of 953 badges on the social media app Untappd, have checked in 710 times for 505 different beers, 434 of which are IPAs. So, when I was told I’d need to stop drinking “indefinitely,” we decided to enter the world of nonalcoholic beverages, starting of course with IPAs. So far in this new journey, we’ve tried 8 different types, and have decided that a rating of “that’s not horrible” keeps the brew in the running, for now. Here are our top non-alcoholic choices so far:

  • Fremont IPA
  • Clausthaler Dry Hopped IPA
  • Lagunitas IPA
  • Sam Adams Just the Haze IPA
  • RationAle New England Hazy IPA
  • Best "dessert" beer: Deschutes Black Butte Porter

    Our top choices for non-alcoholic beers, so far. 

Next stop – non-alcoholic tequilas??

16: No news is actually GREAT news

Two months have passed since my last post, and that's a very good thing. Two months ago my new hematologist/oncologist called me a torto...