A Mostly Optimistic Update

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Many people have sent e-mails inquiring about my wife Susan’s health. A lot has happened since I last posted here about ten days ago. Because of that I will devote this entire post to updating what is going on with her. After today, I don’t anticipate much changing with her – so I’ll be able to discuss IndyCar racing and more frivolous subjects like the evil of dri-fit polos and the goodness of a breaded pork tenderloin sandwich. But today, I want to bring everyone up to speed with Susan, since so many people are concerned about her.

First of all – it’s mostly good news. In the sixteen days she was hospitalized before Road America, the doctors were treating an abscess in her liver, but they were also very curious as to what had caused it. The easy explanation would have been to say her pancreatic cancer had spread some cells to her liver, before her surgery in Feb 2021. They continued to pursue that theory until several scans, multiple liver biopsies and a fairly invasive laparoscopic procedure came up with nothing. They were forced to admit that they were dealing with a far less familiar foe – the rare autoimmune disorder she was diagnosed with back in February (Langerhans Cell Histiocytosis – LCH, for short); after she had incorrectly been diagnosed with the much-worse leukemia in January.

Susan’s oncologist for the past two years has been more of a naysayer than anything else. I am grateful that she chose the right chemo for Susan, but other than that – she has mostly been content to sit on her hands. Early on, she seemed resigned to the fact that Susan had about ten to twelve months to live, and that we should just accept that fate.

When we told her about two months after her diagnosis that we were going to look into surgery at the Mayo Clinic, she immediately questioned why we would do such a thing, saying that the Mayo Clinic couldn’t offer anything that her local group couldn’t do. When the Mayo Clinic deemed her inoperable due to artery involvement with the tumor, we turned to Plan B – the NanoKnife procedure at the University of Louisville, which ultimately saved her life. The oncologist said she had never heard of this procedure, even though it’s been around since 2005. I had never heard of it either, but it’s not my job to keep up with newer techniques and treatments. But it is her job. She said she hated to see us continue to chase fringe alternative treatments, setting ourselves up for disappointment when they don’t work.

This is the same oncologist who mistakenly told Susan she had leukemia in January, only to call her back five days later telling her she didn’t. Ultimately, they determined in February that what she did have was the LCH and her oncologist chose not to treat it yet.

The LCH is what has been causing her problems since January, and what led to her liver abscess last month. Essentially, the Langerhans cells are now being produced in her bloodstream (most likely from her chemo a year and a half ago). Basically, it is causing her immune system to turn on her own body. LCH most commonly attacks the liver, lungs, bones and possibly even the brain. Her brain scans and bone scans show no involvement, but we already know of her liver involvement and her lungs were showing traces of pneumonia just after Road America. If you saw her at the track, you probably noticed how short of breath she was. This is all part of the picture of LCH.

Some of the good news that came from her hospitalization immediately after Road America is that the hematologist has now taken over the case from the very indecisive oncologist. I tread lightly when I say that because Susan really likes her personally, and they have bonded over the past two years. As you can probably tell from my writing, the oncologist and I do not really click. Susan also sees how hesitant she is to do anything other than the norm so she is somewhat torn. I’m not. We met with the hematologist a week and a half ago, and he seems much more assertive, confident and decisive. I could also tell that he was a little miffed that Susan’s LCH was identified in February and by mid-June, had gone untreated.

More of the good news is that the hematologist has a plan. He described LCH as a pseudo blood cancer. He says it’s not really a cancer, but you treat it like it is – with chemo.

Each treatment starts out with a five-day/night hospitalization, because it is constant infusion of different forms of chemo. It’s really six days, because she goes through five 24-hour bags of chemo. After six days, she goes home for thirty-five days. Then they repeat the process. This cycle goes on for forty-two weeks. He said she will lose her hair again and will be tired, but at least there should not be any nausea or anything that just knocks her down like the previous chemo did in 2020 (supposedly).

The best news is that he described the expected outcome as “outstanding, and better than excellent”. He used the word “guarantee”, while acknowledging he doesn’t use that word lightly, saying that he guaranteed that the LCH will go away for “many, many years”. He said he can’t guarantee it will never come back, but he does guarantee it will be gone for several years and she will eventually be back to 100%. So there is light at the end of the tunnel, it’s just a very long tunnel.

Susan started her first round of treatment this past Monday. She went into the hospital on Monday morning, and they began the chemo shortly thereafter. I don’t mind telling you she was scared going in, but she quickly found out that the worst part about the week for her was boredom. I think once she realized it wasn’t going to be that bad, it helped a lot. By Tuesday night, she actually seemed to feel better than she had in the last couple of months. She came home Saturday night. Sunday was bad, but that was somewhat expected. I’m guessing she’ll start feeling better by Tuesday or Wednesday, if her last regimen of chemo is any indication. At least she seems to be walking better and appears to have more strength than when she went in there at the first of the week.

It’s been a long two years, since Susan was originally diagnosed with pancreatic cancer on July 7, 2020. Once she had surgery and completed all chemo and radiation treatments last June, the second half of 2021 was all upbeat. Her hair came back, as well as her strength. By Christmas, I had to remind myself that she had ever been sick at all. That’s quite an accomplishment for a disease that has only an 8% survival rate.

But things turned in January. For months, I sat by and watched her deteriorate before my own eyes. For reasons I may never know, she fought me when I told her to call her doctor. All she would do was to say “Leave me alone”, “I know what I’m doing” or “You’re driving me crazy”. If you saw her at Indianapolis over Qualifying weekend, you know how bad she had gotten. By the time I forced her go to the ER that next week, it was almost too late.

But now we have a plan, and a potentially outstanding outcome. It’s a long path, but one that appears to be worth it. She wants to continue to go to races this season when or if she can, but she probably will not make all of the remaining ones that we had planned for 2022. Some of you will strongly disapprove, but I will go to those races without her. That’s the way she wants it, and she is the only one whose approval I really care about.

Thanks to all who have asked about her, and for coming back today after I took last week off. I realize there are those that think I spend too much time talking about personal things, when I should be discussing all things IndyCar on here. I try to strike a balance, since this is not what I do for a living. But unless there is an unexpected setback, I think things are going to settle down for a while where I can get back to racing. So come back here Wednesday for a full-blown discussion on IndyCar. Thanks for your patience over the past few weeks.

George Phillips

15 Responses to “A Mostly Optimistic Update”

  1. Thanks for sharing . You have identified the disease and have instituted a treatment plan with a knowledgeable physician , you are now on the right track . I understand your frustration with some physicians. Unfortunately it often is up to the patient to push back to the treating physician to explore alternative diagnosis and treatment you have done the right thing as an advocate for Susan .
    Keep fighting the fight

  2. Michele Porten Says:

    George, thank you for sharing this incredible journey. Much appreciated. Godspeed to Susan’s recovery.

  3. Such good news. I’m sorry Susan still has to do the chemo but so grateful that it will help. I appreciate you sharing about your personal lives. IndyCar is great but part of what makes it great is the community and you and Susan are a big part of that community for me. I’m glad you take the time to keep us updated. Praying the time goes quickly for Susan and that she feels better soon.

  4. billytheskink Says:

    Glad to hear there is clarity and a path forward for you all, though certainly sorry that Susan has to go through chemo once again. Prayers continue for you all, for healing, peace, and patience.

  5. Talon De Brea Says:

    Through sickness and in health, indeed. Susan’s a racer. Both of you stay strong.

  6. northeastvista Says:

    Praying for a full and complete recovery for Susan.

  7. I agree with the comments above, George. I appreciate your updates on Susan, in addition to your IndyCar coverage. Please give Susan my very best for this new round of treatment. We all look forward to perhaps seeing you both at a race next year.

  8. Matt B. (Dayton, OH) Says:

    I for one appreciate your updates on Susan. Happy to hear she is on a specific path after all the recent uncertainty. For my tastes you provide a good balance in your writings. Some people just like to complain and criticize. And this post reminded me what an effective writer and communicator you are. Sometimes I take that for granted in your racing posts. Hang in there both of you. Thumbs up!

  9. Thanks for the update George. So glad to hear that you guys have a solid plan and I’m praying that Susan can heal and resume a happy, healthy life.

  10. Tim Lauffer Says:

    Wonderful news for Susan and you. Continued prayers and positive thoughts.

  11. Jim Exline Says:

    Thanks for the update. Prayers

  12. Nestor Reyes Says:

    Great news to hear, in our prayers.

  13. Denise Weltzin Says:

    Belatedly – thank you for the update & no, you don’t write too much about Susan. This is very good news & I’m sending positive thoughts to both of you. You are both warriors!

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