Immunotherapy was attempted this summer in an effort to train my body to rid it of cancer, but instead, my body began retaliating with rashes, painful neuropathy, sleepless nights for an entire month, and pain across my chest, mimicking heart trouble. After four treatments, the last two were scrapped due to toxicity and I was sent off to Seattle this week for better and more treatment options.
I hate to say it was all a waste, however. The initial tumor size of 2.0 was reduced in size, but more importantly, in strength. When a PET scan detects a tumor, it emits an SUV rating that tells the practitioner if the tumor is cancerous or not. An SUV of 1 is acceptable, but 5 is definitely cancer. In addition, a blood marker (LDH) also detects cancer.
My LDH numbers have been consistently under 200 (normal) with a few above (also considered normal post-treatment). When my initial LDH from 2 years ago shot up to 333, I was in full-blown cancer, and when the teeny tiny tumor was found in May of this year, my LDH was a very normal 188.
Three months and two treatments later, however, my LDH was 282, suggesting that the treatment wasn't working and my cancer was growing. Fortunately, a CT scan showed that the tumor was stable, and another two months and two treatments later (last week), my LDH was back down to a fairly normal 215. A PET scan on October 22nd revealed an SUV of 4.1, which meant that the tumor was not as strong as it had been previously; happily, both numbers suggested a good improvement with immunotherapy so I was expecting good news at my Seattle appointment.
Something like, "Hey, since your tumor is so small, let's just watch it and wait." Or, "We can nip it in the bud with a few zaps of proton therapy." In retrospect, I'm a bit embarrassed that as a nurse, I wasn't more tuned-in to the serious nature of being sent to Seattle. Or even that a cancer recurrence was never good news. I have been so encouragingly focused on the "teeny tiny-ness" of this tumor that I have failed to realize that once Immunotherapy was off the table, I still had cancer in my body that wasn't going away.
(Oh, denial is a wonderful thing!).
My point was proven when I met the cancer team in Seattle three days ago. Instead of hearing anything encouraging, I was informed for the first time that because cancer reappeared in an area of my chest that had already been irradiated, it meant that it was an aggressive form of Non-Hodgkin's Lymphoma and must be dealt with aggressively--and soon.
Needless to say, I've been a bit shell-shocked for the past few days.
I was presented with two options for treatment, both that were way more serious than what I'd been expecting: I could choose 6 more rounds of chemo followed by a stem cell transplant; or join a clinical trial.
I nearly vomited at the mention of chemo, so I immediately focused on the trial that begins with a pill and ends with a serious and complicated procedure.
So what does this mean? Basically, I can choose months of chemo to wipe out the tumor, followed by reintroducing "clean" stem cells back into my body to keep cancer at bay; or, I can participate in a clinical trial that is studying the efficacy of reducing/easing side effects with the administration of a pill before a treatment that's similar to stem cell transplant (CAR-T).
Specifically, T cells will be harvested out of my blood and sent to a lab to be re-engineered with receptors that rid the body of cancer. These are called CARs. Three weeks later, those doctored T cells will be put back into my body.
I asked my new oncologist why anyone would choose chemo over a pill, and she said it is standard of care to do the first option, and the study just became available a few months ago, which is super lucky for me! Had I been sent to Seattle earlier, instead of doing Immunotherapy, I may not have had the option to join the study. I was also told that if I choose option #1 and it fails, the next option would be CAR-T anyway.
Anyone who knows me well knows that I'd rather cut right to the chase and get this damn thing over with, so I have chosen option #2.
And if all goes well, CAR-T is supposed to be a life-long cure as my re-engineered cells should remember how to detect and eliminate cancer cells forever.
This is precisely why I love science!
I was freaked out and overwhelmed, but the docs were fabulous. They were already well-versed on my case since I was discussed at their rounds the day before my appointment.
While at their meeting, the MD who wrote the study (!), told my oncologist: "If Katie has any questions tomorrow, call me." When I told her I had plenty of questions, she said, "Okay, I'll go call him," and 15 mins later he walked in and spoke with me at length about what to expect. I already feel coddled by a full team of professionals who work in the second highest rated cancer center in the world.
But after leaving Seattle with a packet of papers in hand, I sobbed pretty much non-stop for two days.
It's odd to be feeling this afraid since chemotherapy, radiation, and immunotherapy never really freaked me out. My BFF was often worried that I went through three treatments so non-plussed; perhaps after 2.5 years of dealing with cancer, I'm finally feeling the enormity of ALL of this.
In addition to the possible horrifying side effects of CAR-T, I also have to live in Seattle for two months to be near their facilities. They don't want me at home (1.5 hours away) during the treatment in case I need the ER; they want me near a hospital that's equipped to handle any side effects/emergencies.
This was when I first broke down crying in the doctor's office. Having to relocate for two months to a big city while going through something scary overwhelmed me. But the good news is, because my daughter lives within 20 of their facilities, I was told I could bunk with her (phew!). And my brother-in-law advised me to treat this time away from home as a vacation and to book a hotel, a day spa and anything that will make the stay easier. Wise man.
Giving into my fear and letting go has helped me work through the process of acceptance. I still feel freaked out at the complexity of the therapy and the possible complications, but I also feel more ready to roll. As a nurse, I have spent the past few days researching the procedure and I joined a Facebook group that's been very positive and helpful.
I was told not to expect the actual CAR-T for another two months while details get hammered out and I get prepped. I will meet with my new oncologist and CAR-T doctor next week, and I will begin the pill shortly thereafter. I'm not sure of the minute details, but after a few weeks on the pill, I will be given 1-2 doses (not sure) of chemo out-patient to reduce the cancer, making space for CAR-T cells to survive and expand. I asked if I'd lose my hair, and was told "It may thin a bit." No biggie.
When the T cells come back from being re-engineered, I will be hospitalized for at least one week while the cells are returned to my body and possible side effects are monitored/managed.
Most people weather the procedure well, with few or no side effects, but if the worst happens, it resembles what happens with COVID--a cytokine storm which can shut down my system. Super scary stuff, but the staff is also highly trained to watch for symptoms and can treat them right away--hence the week-long hospital stay. (I'm not sure I read the fine print with chemo and its side effects because I was never worried about them. Now I'm not sure it pays to know so much!).
I was also told that I'm in the best possible position, medically, to be doing this now: I'm young, in good shape/health (other than cancer!), can handle any side effects better, and the tumor is super small.
All good news.
I am feeling the best I've felt since July when Immunotherapy began. It not only hit me with hard side effects that eventually subsided and disappeared once treatment ended, but I JUST got my precious energy back exactly one week ago today. And with no symptoms of cancer, no pain, and tons of energy again, I'm being asked to submit to another procedure that will turn all of that around, and may possibly be life-threatening as well.
It just feels so...wrong.
But what I'm finding out through others' experiences is that CAR-T is often a last resort after several failed treatments and a growing cancer load. So perhaps that's the approach for me as well. My cancer load may be teeny-tiny, but I have essentially failed three types of treatment. Even though I was in remission for 20 months after chemotherapy and radiation, cancer still resurfaced.
Oh yeah, that.
It's an interesting phenomenon having a ticking time bomb in my chest. It reminds me that everything I do can influence the outcome of this cancer--from the things I put into my body, to my attitude, to the choices I make about treatments, and how I view my future in light of a cancer recurrence.
It's sobering. But it's also life-affirming.
Because of this on-going experience, I have learned what matters most in my life and it always comes down to the simple things: a wide group of people who support me unconditionally, time with my children and grand-children, delicious food and drink, quiet time, a beautiful sunset, laughter (lots of it!), a deep relationship with God, and my own happiness--just to name a few of the millions of miracles that grace my life.
And ironically, I do feel happy. Yes, I am still nervous, but as I educate myself I also feel empowered; as I share my news with family and friends, I feel supported and loved; and as I continue to live my days as if they're my last, I feel complete.
In my grief, there is still plenty of beauty.
We are never guaranteed more than today, but we do have control over how we face what shows up. It is because of these challenging moments that I choose to rise above them with a positive outlook and stare them down with confidence as I boldly declare:
Not today, cancer. Not today!