Well, what did happen in November…nothing really. Not many changes to the routine that we had for chemo and immunotherapy. Everything else also stayed the same and it was just operating day to day.
I had 2 more rounds of chemotherapy in November along with 1 more round of immunotherapy. Those came and went with no real issues or side effects. Also right before Thanksgiving, I had another blood transfusion as my numbers were getting low again. Nothing that I wasn’t used to by now and nothing that worried me. It was, like I said earlier, day to day operations with no major setbacks or issues to report.
So let’s talk about how I was feeling in November because there were some highs but plenty of downs this month. Even though treatment was going fine and there were no issues to report, my emotional and mental state did veer off course a couple times this month.
For starters, at this point in my treatment, I was hoping to have some noticeable progress or improvements to my condition, but a lot of the changes were behind the scene, or rather internal than external, and I wasn’t recognizing that or chose not to credit those to accomplishments or forward progress.
I had a couple breakdowns about my weight and eating habits. I don’t think I have mentioned it in any prior post, but my weight has been a big issue throughout treatment. I lost a lot of weight in the beginning stages of the diagnosis and initial chemo treatments due to not being able to eat and stomach pains. I think in total, since August, I was down roughly 40 to 50 pounds…weighing roughly 150 currently, but starting in the 190s back in August. My oncologist is really pushing for me to gain more weight as that will get me ready for any surgery that may come about if progress on my condition looks good. This really got to me this month as I thought I would be up a couple more pounds and eating regularly by this point, but that wasn’t the case. I was still having trouble eating small meals and each meal came with its own set of uncertainties or issues that ranged from indigestion, gas, or just food not settling well and me having to throw it up to get some relief in my body. Thanksgiving was no picnic as I really wanted to try and eat but the food just did not settle well…ended up feeling really sick after our mini Thanksgiving and I was not happy about that.
Another emotional issue I had this month was around my body. I know my body has gone though a lot of changes and it isn’t the same body that I had previously, but mentally, throughout this month, I kept wishing for some sense of normalcy to come back and it hasn’t. I think that got me down a few nights and as I looked at myself in the mirror, I realized that I was a shell of my former self. That has been mentally draining as I continue to wonder why I still look the way I do and why hasn’t treatment fixed any of it yet. Again, I know that progress with cancer and chemo takes time and nothing happens over night, but there is still a part of me that believes that I will wake up one day and everything will be back to normal.
Finally, nothing new about chemo pain, but the constant discomfort, mood swings, and mental fogginess took a toll on me mentally. There were plenty of times this month where I would just zone out and be off in the distance mentally. I think many times when it happens, it is because I’m trying to calm my body down and subdue the discomfort or pain I’m having at that moment. More times than not where someone in the room with me would see me staring off into the corner and ask me what I was thinking about…and honestly the answer was nothing. Nothing in the brain, nothing in the mind, just blank staring and hoping for the discomfort or malaise to go away.
Okay, enough about some of the lows – what were some of the highs that I had this month you’re thinking. As I look back and think about the highs, I can only think of two.
The first one being that I found my excitement and joy for playing games again. For the first couple months after diagnosis, I pushed away anything that previously gave me joy like food, candy, games, and being around friends. Now, things like being around friends I knew I had to sacrifice as I needed to stay safe and healthy for treatment. So I knew an isolation bubble needed to be put up. I was content and okay with my decision to do that. Things like food and candy that once gave me joy did not anymore due to the changes in my taste and my ability to eat them, so nothing in my control there. Playing games however was one thing that I could have kept doing, but chose not to. Sometimes because I was too tired to pick up a controller, but many times because I was too focused on what the next step of my treatment and healing was…failing to recognize that enjoyment in playing games is part of my healing journey. So, this month, I really got back into playing on my Switch. We brought my computer over from my house and set it up and now its ready for when I’m ready to play more games.
The second big high that I experienced in November was a sudden decrease in my abdominal fluid output. Fair warning, if you don’t want to read about bodily fluid and such, I’d stop reading now. LOL. So, up until the last couple weeks in November, I had been draining 1L of fluid out of my abdomen every 24-36 hours. Fluid build up was consistent and draining it helped me feel some relief in my stomach as well as made room for food and other organs to move around and function, such as my lungs and heart. Well, not sure exactly when it happened, but after one of my rounds of chemo, the fluid just suddenly decreased, and by a lot. A sudden decrease that I experienced usually is a sign of either healing or something wrong with the catheter, but we’ll get into that in a bit. Back to the fluid decrease. I went from 1L to outputting a little less than 300mL in the same time span. That gradually went down to where we are today, about 100mL daily. So what did this all mean? I wasn’t sure at this point so I scheduled an appointment to get the catheter evaluated to ensure it was still working properly. It took a few weeks to get the appointment, but answer was yes, it was working just as expected, no blockages or any damage. So with that, the decrease in fluid had to mean that my abdominal lining that had the cancer invade it was healing and producing less fluid each day, some good news. Hopefully it also meant that the cancer was shrinking or being killed off from that area, allowing the abdominal lining to heal itself. All that being said, the hope is that the fluid eventually stops and I’m able to get the catheter removed one day soon.
Alright so long winded post about November, but I learned and experienced a lot this month. Even though there was not major new or any changes with treatment, a lot going on mentally that I’ve had to deal with. The hope is always to get better, but hopefully we are about to see some major improvements sooner rather than later.
Until next time.
Jonathan H.
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