When you ring the bell at your final cancer treatment there is no magical test they administer to tell you that you are cancer free, in fact, all of your doctors will certainly tell you you are not cancer free… but you will be.

See, radiation and chemotherapy are cumulative treatments. This means that as you continue to do them they continue to build up in your body to keep your cancer first in check, then kill it, and keep it from reproducing. The effects of these treatments are meant to outlive the length of the treatment by design. So, for about the next 90 days I’ll have chemo and radiation in my body doing battle against what remains of the cancer cells in my body.  In three months I’ll get the first of my quarterly PET scans to see if there is any remaining cancer but my medical oncologist, Dr. Ferrell, warned me that the site will likely be too active with toxicity to be conclusive. My 6-12 month scans will be the ones that tell the tale accurately.

A clean scan means there’s, ostensibly, no more cancer left in my body. A scan could also reveal it spread at some point and I need a new treatment to address it, or that it isn’t all gone in the original site and we need to figure out a new plan to kill the rest of it. Both, as you might imagine, are not the outcomes I’m looking for but it’s not really in my hands.

As I alluded to in my last post, while it was a very touching moment when I got to ring the bell at the proton center, it was actually the beginning of a hellish week for me. I was warned that recovery would start off with two terrible weeks before I started to notice actual recovery and improvement but good lord.

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Hydration

As I’ve mentioned before, I receive regular “hydration” infusions that have increased in frequency to the point where I have it done daily at the Army hospital now. Every day for the next few weeks I’m scheduled to go in for an hour and get an IV of standard sodium chloride fluids to help stave off dehydration until I can get enough fluids in on my own either through my feeding tube or orally.

At first my hydration appointments were an amalgamation of times at the cancer center in Seattle and the oncology department at the Army hospital, but finally I was able to get into the outpatient infusion services at the Army hospital where they have the capacity to accommodate someone like me that needs daily treatments.

Over the weekend I had the feeling I was going to be in trouble, as my nausea was to the point where I didn’t want anything through my tube and even medicines were off the table to include nausea and pain meds, because they inevitably made me vomit. In the back of my mind I figured if I could just make it to Monday’s hydration appointment I’d feel right as rain afterward. I was wrong. I didn’t feel better at all.

I was now finally caving to the idea that I might have to go to the dreaded ER to wither and die in triage while they figured out what to do with me. My mom had been on the phone with my oncology case manager and the wheels began to turn to get me admitted for at least a night to get me back on track.

The next day, Tuesday, I felt half dead. My mother wheeled me into the infusion clinic and I had to lay on the floor just to avoid falling out of the chair. I received my infusion but was shuffled into a private room after to wait. I saw Dr. Ferrell and we had the discussion that if I had to go to the ER I’d rather just go home because I had zero faith the ER was going to be good for me. He tended to agree given the ER’s trust level in that facility, and was working a deal to get me into the inpatient floor for family medicine. I was tired, in a bad mood, and felt terrible. All winning combinations to make great decisions with.

The family medicine team came to see me and I was not kind to them. I didn’t understand what they were going to do for me that was different that what I was doing for myself, or could do for myself, at home. I waived them off and wanted to speak to Dr. Ferrell again. Someone needed to tell me what the hell was going to happen in a way that made sense to me or I was just going home. I wasn’t going to go resign myself to a night of misery in the ER, or have another night like I did when I got my feeding tube placed, as a revolving door of medical pros just trying to make it through their shift acted like they gave a shit about me for 12 hours until they could wash their hands of me and go pound beers at MacNameras.

Dr. Ferrell, visibly annoyed by my resistance, came back and was able to satisfactorily explain everything I needed to understand and my concerns. Ok, fine, I’ll go. But if this sucks for no reason I won’t trust any of you ever again.

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The Resurrection

I was wheeled up to the family medicine floor of the hospital and taken to a private room, thank God for being immunocompromised, where I was laid in bed and hooked up to a new IV and weighed. 170. Holy shit. That’s 15 pounds lost in less than six days. I haven’t weighed that much at my current height since I was 19 years old. This, as you might imagine, freaked me out a little bit. Not the lightest I’ve ever been at this height, but close enough. I have my work cut out for me during this recovery.

Throughout my stay at family medicine I was blessed in the sense that the daytime attending doctor remained the same the three days I ended up being there, and 80% of the nurses were excellent. The remaining 20% I’d classify as “good enough to keep me alive.” I was continually fed IVs and eventually feeding through my tube was reintroduced at a crawl, but increased gradually through my stay. My nausea meds were reintroduced through my IV and overall I began to feel better by about one percent per hour. Over the course of 72 hours my gains were significant. By the time I was discharged Thursday afternoon I was feeling optimistic that I could carry on at home and do enough to survive this awful phase of recovery.

Through the rest of the week to today, Sunday, I’ve managed to remain fairly steady in my feeding regimen, increasing the pump rate slowly, and I’m hoping to break 100 ml/hour later this morning. 

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Mother’s Day

Today is Mother’s Day in the USA (I have no idea if other countries celebrate it or if they do, what day) and I’d be remiss if I didn’t talk about my own.

If you’ve never had to be a caretaker for a highly independent 38 year old man going through an aggressive cancer treatment in a highly sensitive area, well, I don’t think I can recommend it. No one is equipped to do it without pay unless they are a loving mother. 

My mom has been here more or less from the start and jumped in with both feet, which, as I mentioned above, has caused friction at times. I’m highly independent, like how I manage to keep a lid on this shit and function as an Army officer is a mystery to me and those who know me best. Giving control over huge swaths of my life to someone who had previously had that control for the first 17 years of my life was a process in itself, and not always a clean one. There have been arguments, misunderstanding, disagreements, and miscommunications right and left as we both try to navigate this process. The difference in dynamics because I am an adult that is still ultimately the decision maker in my life is also something that can’t be easy to navigate for a mom that just thinks she’s doing what is in her son’s best interest.

My mom is doing, and has been doing, an amazing job. Everything I’ve needed her to do, or asked her to do, she has done without a second thought or complaint. Most notably, facilitating visitation with my kids. The kids get to see grandma most weekends now, and while my oldest understands why, they still enjoy their time with her that normally only comes once a year when she visits us. This time is invaluable for both of us.

She’s functioned as my clerk, secretary, personal assistant, nurse, chauffeur, and counselor over the last three months and I don’t think I could have done this without her. I really have no idea how I’d have made it this far without her, specifically, doing the things she probably thought she was done doing 20 years ago. 

Thank you mom, I love you, and I will never be able to properly repay what you’ve done for me over my life. Thank you for being my mom, and thank you for being a great mom.

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The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.