Chicago Chemo Update

On Saturday morning, Mom and I took a morning walk along the lake ahead of my re-admission to the hospital. I am fully aware, now, that I looked 100% like a tourist because of my t-shirt and hat. The hat was a necessary purchase - I did not anticipate having seven days to be outside in the sun when I was packing for this trip!

Chemo is underway!

I had a smooth re-admission into Northwestern on Saturday afternoon, July 18th. That evening I received my first doses of each of the three kinds of chemo: Cladribine (5 days of infusions), Cytarabine (10 days of two shots in abdomen per day), and Venetoclax (21 day pill).

Currently, I have finished the five Cladribine infusions, I have received half of the Cytarabine shots, I've taken 5 Venetoclax pills, and I am not feeling any noticeable side effects. My blood counts are dropping, as is expected with the intent of the chemo, but my doctor is pleased with the steady pace of the decline. I will likely feel more fatigue as the counts drop further, especially when I near the end of the Venetoclax pill, which is around August 7th.

The schedule moving forward is as follows:

• I will have my last Cytarabine shot on the morning of Tuesday, July 28th. After that, I will be discharged to go home, where I will continue to take the Venetoclax pill.

• On August 6th, I am scheduled to return to Northwestern for a bone marrow biopsy, the "quick" results of which should provide enough information to determine if the leukemia blasts are low enough (below 5%) or completely gone (ideal!). This will be an overnight or one day trip (logistics haven't been worked out yet).

• I am scheduled to be readmitted to Northwestern, longterm, on Thursday, August 13th. If the biopsy results show leukemia blasts are 5% or higher, then I will receive another round of chemo (which could be the same or different than the current chemo I'm receiving). If the blasts are 5% or below, then I will begin the stem cell transplant process. Please pray the transplant process can begin at this point!

• One area of concern is how I will feel during my time at home. My blood counts will take a hit as the chemo ends, but have to be at certain points before the transplant can begin. I expect I will be receiving quite a few transfusions to keep the counts at high enough levels. When my blood counts are very low or non-existent, I will feel at my worst, but I'm practicing some preventative habits now to hopefully offset those possible symptoms. I am relieved that the team here at NW is already coordinating with my team in Peoria to make plans for my return home!

Prayer requests:

• Pray the chemo is reducing the leukemia blasts to 5% or lower...preferably zero!

• Pray I have mild side effects to the chemo.

• Pray for safe travels to return home.

• Pray that I feel okay-ish during my time at home.

• Pray the transplant can begin as soon as possible, and that I feel well with high enough blood counts so it is not delayed.

A Day in my Life at Northwestern

I suspect many readers may be wondering what I'm doing with my time here at Northwestern. I can assure you, it isn't boring, but maybe that's because I'm a non-typical patient in that I am quite healthy and independent. (My nurses and personal care techs like that I'm so low maintenance, but yet feel like they aren't doing enough for me!)

I have been sleeping until around 8 am each morning. Around 8:15, my room is cleaned for the day. I usually order breakfast by 9, which means eating between 9 and 10. Around 10 am I receive my first Cytarabine shot for the day, after which I either take a shower and/or use the full body anti-infection wipes before changing into my own clothes. At some point in the morning (often when I'm in the bathroom!), the doctor team (oncologist, general physician, pharmacist) stops in to check on me and give me updates. It has sort of become a running joke that they have no news to tell me, and I have no news to tell them! Despite the joking, they seem genuinely glad that I'm doing so well under the circumstances.

Mom walks over from the hotel around 11. We visit for awhile and walk the floor. Because we both have to wear masks outside my room, we notice that after walking ten laps (with about 140-ish steps per lap), we are a bit winded and ready to step back into my room. This morning the doctor team released me from being on fluids around the clock, so I no longer have to drag the heavy-duty IV cart on our walks!

Mom and I continue to try out different restaurants (more on that later), so we get lunch and watch "Friends" while we eat. After lunch, we walk again. Mom then usually has somewhere she wants to walk, like Trader Joe's or Walgreens or Target, so she leaves for awhile. She also does a lot of sightseeing and walking along the lake. She's had a few days with eighteen to twenty thousand total steps! Meanwhile, I keep busy reading, painting, doing word puzzles, or napping. Sometimes I walk the floor while listening to a podcast.

I would like to thank my friends/cousins Stacy and Eliot for giving me this flower bouquet watercolor workbook. Watercolor was never an easy medium for me to use, so I haven't painted with such paints for many years. I appreciated the instructions given to copy the author's painting (on the left) to my version (on the right). I worked on this painting in two sittings, and I am not sure if I'm done with it yet!

Mom returns around 5:30 or 6, and we decide what we will do about supper. We have been getting supper at area restaurants, too, but I have also gotten a sandwich from room service and supplemented with sides from elsewhere.

Mom leaves by 9, and then I have to wait until 10 for my second shot for the day. After the shot I am ready for bed! I haven't had any trouble sleeping since being in Chicago - hospital or hotel - and I attribute that to eating and exercising more, as well as no longer worrying about "everything Chicago" as I was for weeks before this.

My overnight sleep is interrupted between 12 and 2 so that my nurse can draw my blood. If any counts are low, then the nurse will return a couple hours later to hook up needed fluids. The personal care tech also comes in between 4 and 5 to check vitals. The nurse returns at 6 to give me an early med and give me a final check. After that I sleep soundly until about 8. There are nights when there have been even more interruptions for various reasons, including multiple trips to the bathroom, but I rarely fully wake for any of them and can go right back to sleep, thankfully!

Our "Gourmet Odyssey" Continues!

I so wish I could take credit for the term "gourmet odyssey" but all credit and royalties belong to my dearest and best wordsmith friend, Janet, who bestowed this phrase on our culinary quest. (She may still be waiting on pay-outs from Facebook posts I made about her from days of yore....)

Chicago's food has been one of the greatest and most unexpected benefits of this entire journey. Now, some restaurants we are enjoying can be found in central Illinois, but we have realized we don't take time to explore their menus or even patronize them. We are also loving the order ahead/pick up option, which allows us to decide at our leisure and gives Mom enough time to walk to get the order.

So, just for fun, here are some of our favorite stops (with direct links) on our "Gourmet Odyssey" thus far:

• Burrito Beach: We shared a quesadilla and a taco, and both were surprisingly "light" due to fresh tasting ingredients. The chips were crispy and homemade, and the salsa had a fresh from the garden flavor. The frozen custard is an added bonus, but sells out quickly!

• Gino's East Pizza: We had half meat lovers, half supreme. We were shocked that the pizza itself was not as thick as casserole (!), and the crust was like a buttery biscuit. It was incredible!

• Gotham Bagel: I miss Lox, Stock, & Bagel, a fantastic restaurant that was in the College Hills Mall in Normal, IL. Gotham Bagel gave Mom and me "Lox, Stock, & Bagel Vibes" - the bagels were piled high with decadent cream cheese. I had a salt bagel with scallion cream cheese, and Mom had pumpernickel with plain cheese. We shared a potato latke - which was a delicious as I had imagined - and laughed when the two bags of bagel chips turned out to be full-sized bags, not side order-sized!

• Panera: The Carnitas Elote Market Bowl could feed two people. It's just about a dollar more than some of the Panera sandwiches, and it is loaded with some of my most favorite ingredients: pulled pork, feta cheese, red onions, corn, greens, and cilantro crema dressing. We have also enjoyed Panera's frozen strawberry lemonade.

• Potbelly: Today we split the Pizza Melt sandwich, and it was wonderful!

• Protein Bar & Kitchen: We have enjoyed their acai bowls, particularly "The Elvis" and "Triple Berry" bowls.

• The Original Rainbow Cone: You really need to click that link to see what an original rainbow cone looks like! None of us were brave enough to try it, but the Palmer House (vanilla, cherries, & pecans) and Lemon Raspberry Swirl were perfect single scoop flavors!

• Tallboy Taco: The Original Crunchy Boy is worth trying! So good! (A nurse compared it to the Taco Bell Crunchy Wrap.)

• The Cheesecake Factory: We went two days in a row, got there promptly as it opened, and both times were seated at the same table and had the same waiter! That restaurant has endured because of it's amazing menu, more than generous portions, and cheesecake. Enough said! Mom particularly liked the Meatball Sliders - which are featured as an appetizer but she had them as her entree.

• Timothy O'Toole's Pub: A pub below street level that gives "Cheers" vibes and serves delicious food. Ed & Joy enjoyed Chicago style hot dogs, I had the Sloppy Joe Sliders, and Mom had a Smashburger. This pub was featured on "Man vs Food" on Food Network!

• Beatrix Restaurant & Market: We love the Market because of it's large variety of fresh hot and cold options. The blueberry baked oatmeal is a favorite for breakfast. I tried a spoonful of the cheesiest grits and liked them! The market's garlicky herb-encrusted wings and drummies are just amazing! Today Mom finally scored the lemon angel food muffins before they sold out - and we now know why they're a hot commodity!

The chicken tenders meal at The Cheesecake Factory: There were about 10 tenders here...and the corn was fresh off the cob with butter, garlic, and herbs - the best corn I've ever eaten! The mashed potatoes were also on point! (We had enough left over tenders for another meal!)

The lemon meringue cheesecake at The Cheesecake Factory. No notes.

The lemon angel food muffin...you can see why they sell out quickly! The lemon was in the glaze, and it was a tangy compliment to the muffin.

Thank you for sticking around for this delicious view into our time in Chicago!

As always, thank you for your continued support, love, and prayers!

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