Guilt

Guilt. It can wreak havoc on one's mental and emotional well-being. It's pervasive, and if not recognized and dealt with, can be very detrimental. Ask me how I know...

My most recent experience with guilt is still eating at me. I am a cancer patient at The University of Kansas Medical Center in Kansas City, Kansas. I live three hours away from there, but my insurance would not cover a procedure I needed here at home. They require that it be done at a "Center of Excellence." More on that later.

So I needed a place to stay in KC, and luckily the American Cancer Society has one of their Hope Lodge locations there. They allow patients in active cancer treatment to stay there free of charge along with their caregiver. So my mom, who is my caregiver, and I went to KC and have been staying there. It's a wonderful place, run by wonderful staff and volunteers, where patients can rest and relax, meet other people going through similar experiences, and be close to the medical care they need.

Anyway, we made a trip in August to start the process of the transplant workup, then back again mid-September for more workup, and then we had to go back in late September for the transplant. But the day after we arrived and had my first appointment we found out they hadn't gotten a prior authorization back from insurance yet. So I made calls, my transplant coordinator made calls, and we got the runaround. The start of treatment was delayed by a week. In the meantime, my mom and I had fun running around in KC taking in the city life, shopping, walking downtown, all the fun KC stuff.

KC at sunset

We finally got the PA from insurance and I started the process of preparing my body for my stem cell transplant. More on that later, too. The day I went in to have my stem cells collected, I woke up with a sore throat and sinus pressure. So they did a nasal swab and found I had rhinovirus. No big deal, rhinovirus is just one of the viruses that can cause the common cold. BUT. I was scheduled for a super strong chemotherapy that would wipe out all of my immunity. Like. ZERO. White blood cells. So... another delay. I was told to check out of Hope Lodge, go home and rest, and come back the next week to start the chemo.

We couldn't stay even though I was literally coming back in five days. Five days. We had to pack up all our shit. Which was way more than we ever needed! We drove the three hours home, and here I am the next morning typing all of this. And that's good, because I started this blog forever ago and I had only posted one time, and this gave me direction and something to think about. Maybe I can build some momentum off of this. Fingers crossed.

So here comes the guilt part. First, the guilt for having caught a virus. We had visitors over the weekend. My sister and my son. Neither of them was sick, although my son has had a stuffy nose and a cough for over a month and had already been to the doctor, and I doubt he was contagious. But we went out to eat. And to the zoo. And rode the KC wheel. A very anticlimactic ferris wheel ride. So I could have picked up the virus anywhere. Technically, I could have picked it up at Hope Lodge too, but the guilt told me that all those people are way more careful than I was. Oh, I was pissed at myself. Why didn't I take better care not to expose myself? What if I infected someone else who was really immunocompromised? I caused all the headache for my care team of rescheduling everything.

Kyle staring at a strange looking fish at the KC zoo and aquarium

I'm also mad at the American Cancer Society that they have this rule that we have to be in active treatment, and that a week's delay in the middle of someone's treatment means they are no longer in "active treatment." But I guess it depends on your definition of active treatment. To me, I am still there, because I still have a central line and I am between two steps in my treatment. But I guess to them, those few days could be used by another patient who might just need to be there for a few days. So I understand.

And that leads me to the other guilt part. We stayed a whole week and took up that room, not knowing that we should have checked out and gone home. We essentially vacationed in KC for a week with free lodging from a nonprofit, taking up space that could have been used by another person in need. How stupid could we be? But at the same time, we didn't know that it was going to be a week. We kept thinking we might be able to start any day. I didn't even realize that it didn't work that way. I'm pretty sure that the hospital has a system where their schedule runs by certain procedures being done on certain days of the week. At least for the treatment that I am going through, where the regimen includes 4 days of this, followed by 2 days of that, 1 day of the other, and so on. It makes sense that they need to time certain things to be done on weekdays. FACE PALM!

Over the last few years I have had some "life coaching" and some therapy, and I have learned that we should treat ourselves like our own best friend. If my best friend was going through this, I would tell her not to beat up on herself. I would tell her that the virus could have been picked up anywhere, and that she was kind because as soon as she had symptoms she stayed away from other people at Hope Lodge. I would tell her that she did the right thing by wearing a mask and going home, and that it would all be okay, that no one was mad at her. I would tell her not to feel guilty about the week she stayed and maybe wasn't supposed to, because she had no idea. No one told her she had to leave. No one said this isn't active treatment anymore and you can't be here. No harm was done. It's all okay. Forgive yourself.

I've told this to myself over and over again. The guilt is still driving me mad. I will, over time, feel it less strongly. And I also remind myself of this. Guilt has a purpose. Someone who has no guilt, no remorse, is a dangerous person. Feeling guilt means you have empathy. It means you have a moral compass, you learn from your mistakes. Guilt means you are a good person. Because the only people who don't feel guilt are sociopaths.

So if you're struggling with guilt, be kind to yourself. Show yourself the same grace you would another person. You aren't bad. Feeling this way means you're good and you should feel good about that. That's the one thing that makes me feel better.

I'm sending love to you, whoever you are out there who might come across my blog and read this. I hope it helps. And I promise, I will tell the story of my cancer journey too!