A Last-Minute Decision

This post is a combination update on Susan’s health and a racing-related travel post. If you’ll recall, about a month ago – my wife, Susan, was told that she had leukemia. For almost a week, we mentally dealt with that diagnosis. In that time, Susan underwent a procedure where they knocked her out, drilled a hole in her hip and extracted bone marrow. A couple of days later, a hematologist from her oncology group called to tell her that her bone marrow was showing no evidence of leukemia. The sample was shipped off to some “super” lab to learn what the problem was, since her blood work had indicated leukemia.

Last week, we finally got our answers. Susan had her regularly scheduled quarterly scans last Tuesday morning, and we met with the oncologist later that day for the results, and got sort of a mixed bag. While her previous scans had been completely clear, this one showed a questionable spot on her liver. In the meantime, they had a suspected diagnosis for the rash that has been getting worse since last fall – something called Langerhans Cell Histiocytosis, named after German pathologist Paul Langerhans, who discovered this condition in the mid-to-late 1800s.

Without going into full detail, it is somewhat of an autoimmune disorder involving the white blood cells attacking normal tissue; in Susan’s case – a painful rash. This was most likely caused by the harsh chemo during her treatments for pancreatic cancer from July 2020 through January 2021. A less likely possibility, but a possibility nonetheless, was her COVID vaccine caused this. We’ve been told that the Pfizer vaccine, which she had, has shown evidence of causing autoimmune disorders, especially in some cancer patients. Regardless how she got it, all sign were pointing toward this being her diagnosis.

On Thursday, we learned that her suspected diagnosis of Langerhans Cell Histiocytosis had been confirmed. Although no one wants an autoimmune disorder, this was a much better diagnosis than leukemia. It is common for Langerhans to cause pockets of liquid to show up on a CT scan. Plus her CT scan showed that her lymph nodes were clear, and there were no other spots showing up anywhere. But just to be certain that the questionable spot on her liver was not a metastasis from her original pancreatic tumor, they performed a PET scan on Friday. We learned the results late Friday afternoon that this spot showed no cancer activity, nor was there any cancer activity in her entire body.

While we are absolutely thrilled at this latest news, the fact remains – she is still in a great deal of pain, as the rash keeps getting worse. Technically, what she has is not a rash. Instead, it is a group of lesions that make things quite uncomfortable for her. While trying to diagnose the issue, they have not been treating her symptoms. She has proven her toughness over the last year and a half, so when she says the excruciating pain is debilitating – I believe her. This past Saturday night was by far the worst it has been. She had to lie on the couch without moving, due to the pain. Moving in any direction causes her to involuntarily scream out. Now that they know what they are dealing with, treatment can begin and hopefully her pain will subside.

The good news is that she won’t die from this. The bad news is that she can have periodic flare-ups for the rest of her life that have the potential to make life pretty miserable, when they occur. This concludes the medical portion of this post, other than declaring – old age sucks!

Last summer, I promised Susan that if she got herself well – I would take her wherever she wanted to go, on a trip that did not involve racing. When she had her first clear scan last August, I told her to pick out a place and we would go. She was getting involved in going back to work part-time and catching up on all of her other activities she had let lapse for the previous year. While things seemed to be completely back to normal that also meant that she was too busy to take a vacation.

Suddenly, it was November and time for her second quarterly scans. When they came back clear, I reminded her that we should take a trip. But with Thanksgiving, then Christmas on the horizon – it just didn’t seem to be a good time to go. Plus by then, this irritating rash had surfaced and she wanted to get that cleared up before heading to some warm-weather swimsuit destination.

A couple of weeks after New Year’s Day was when we got the leukemia diagnosis. As we were in shock processing all of that, one thing I remembered clearly was Susan stating regret that we never got to take the trip that I had promised her. She was kicking herself for putting it off, and I was kicking myself for not taking control, making the arrangements myself and just forcing the issue. Fearing the worst for the coming months, it looked as if not taking a vacation may be the least of our problems.

This Langerhans diagnosis is not great, but considering we were originally told that she had leukemia – we are ecstatic, and (again) feel that she has been given a new lease on life. Now that we know what we are dealing with, we aren’t going to allow this extra chance at life get away. As Jake Query of the IMS Radio Network is fond of saying – Squeeze the juice out of life!

While I am still holding my promise to take Susan on a non-racing related trip to wherever she wants to go; we have decided at the last minute to attend the Firestone Grand Prix of St. Petersburg in less than two weeks. We attended that race in 2019 and enjoyed it. Three years ago, we flew. When we got on the plane in Nashville, it was drizzling and 38°. During the days of on-track activity from Friday through Sunday, the skies were sunny and the temperature got up to a very nice 82°

This year, we are driving. By deciding this late to go, air fares were ridiculously expensive. Plus, I’m not a fan of flying during the COVID era. We’ve flown twice since COVID started – once to Road America in July of 2020, and for Susan to visit the Mayo Clinic in October of that year. It’s been a year and a half since, and I would just prefer to drive – for this race, anyway. I’ll work half a day on Wednesday Feb 23, then we will leave town mid-afternoon. We plan to stay in Macon, Georgia that night, then make a leisurely six-hour drive of it on Thursday. On Monday, we plan on doing the full eleven-hour drive back home in one day.

Another by-product of deciding at the last minute is that all hotel rooms are booked. Susan found an airbnb that was very cheap and close to the track, but by the time she called me to take a look at it, it was gone. Where we stayed three years ago had been sold out for a couple of months. Everything else near the track was in the $350 per night range. So being cheap like I am, we found a very affordable hotel in Clearwater for about half of that. It’s about a thirty-five minute drive one-way each day, but it’s a nice area and it’s all I cared to spend.

Hopefully after a couple of weeks of treatment, Susan will be feeling much better for our trip. I am excited about this trip. After the cold winter we’ve had (it was 18° in Nashville yesterday morning), who wouldn’t want to spend a few days in sunny Florida, basking in the sunshine, eating fresh seafood at night and oh, by-the-way, being there in-person to watch the kickoff to the 2022 NTT IndyCar Series season? Plus, after the emotional roller-coaster we’ve been on for the last month – we need to get away, even if it’s just for a few days. But I promise…that non-racing trip is in our future. I’m just not sure when it will be.

George Phillips

5 Responses to “A Last-Minute Decision”

  1. billytheskink Says:

    You all have fun in Florida! Very happy to hear that the diagnosis is not leukemia and wishing you both the best.

  2. Enjoy your time down in Florida and soak up that sunshine!

  3. Good to see that Susan is going with it would seem many others if the hotel room rates are anything to go by. Looking forward to the reports!

  4. Brent Blaine Says:

    Look forward to seeing you both in St Pete!

  5. James T Suel Says:

    George you are married to one tuff woman. Very happy to hear of the favorable diagnosis. Enjoy the race. I have a sister and brother in law living in St Pete, I could get you one of there beddrooms!?bedrooms!?.

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