Category: Cancer

What’s worse than losing your taste and smell? Losing it while your stomach and intestine lining die. It’s a special experience that I would not wish on my worst enemies.

In this second cycle, the phases of this process are becoming more pronounced. It is now obvious exactly what parts of me are dying and what parts are going through recovery. Currently it’s the digestive track’s turn to die. It’s the weakest I’ll feel and I can start to eat and taste better everyday after I get through the low point. This time the low point lasted four days.

Not too bad at all, I’ve seen the journey of others, and I choose to be thankful. It’s so rough, but I can definitely handle this, especially thanks to the amazing care from Cyndy and City of Hope. I literally have no idea how I would make it through this without my wife. I’m the luckiest guy.

So, upon returning home I immediately started all the proper medicines. All labels and instructions where checked and re-checked. Everything was taken on schedule and despite being in constant low-grade discomfort and pain (especially the bone aches from the Neulasta shot) I felt like this cycle was going much better than the first.

I was rapidly losing the last of my taste buds (a process which started last week), and my smell was entirely gone. Both of which are major factors in being able to eat.

I was ready and prepared to face this for the next week, it was not fun and very uncomfortable, but way better than the first cycle. However, I was about to get a upgrade in my understanding of this chemo recovery process.

I’m in a different Unit this week, my room is still en-suite, but only the shower, and my suite-mate is not mobile, so basically I have a large private room and facilities to myself. The week whisks by, although I deteriorate faster this time. It keeps getting hammered home that these chemo drugs are more aggressive that the last ones that had 10 years ago. I’m grateful to have these other treatment options though, my cancer isn’t exactly envogue like some of the others. I’m making life saving progress and that’s all I care about!

I feel the loneliness of the hospital more acutely this time too. I’m not sure that it can be helped much either, I’m so tired most of the time that even chatting on the phone is hard. I just feel like I’m not giving properly to the people on the other end of the conversation.

I ended up watching all the Harry Potter movies by the end of the week. It had been on my todo list since the last one came out in….2011. All in all, another week in the bag, and I’m very ready to go home and start the ‘hunger games of recovery’ for the next 7-10 days. Something tells me this cycle is going to be more difficult than last round.

After a fairly pleasant weekend, it’s time to head back into the hospital for the second cycle. After another negative covid test, suddenly I’m admitted without delay. I’m already in the gown before lunch and getting infused by mid-afternoon. It’s much better than the 2am wrap-up that went on last time.

The information that I’m very, very interested in is the AFP (Alpha Fetoprotein) numbers that are the main indicator of progress. The number should be less than 10 in a normal adult male. Mine was around 160,000 when I started, which is why there was so much concern from the doctor…that number is beyond super bad. Right now, waiting for the test results, which should come back this afternoon is all that I can think about…which is unfortunate, because I wasted an entire afternoon.

The results didn’t arrive till well into the evening. The doctor told me last cycle that the expected result from the textbook have the AFP marker around 80,000. Which is almost precisely what my numbers are. So far I’m a textbook patient.

I get to spend almost the whole day with Waylen today. Cyndy planned all her errands for today so she can get them all knocked out in one go.

I have spent many days with the girls over this pandemic, but being a full-time stay at home parent, is not for the faint at heart. I’m out here doing it for one day, and I’m already at the negotiating table. Eventually I learned to cope, but it’s not easy to train a tiny person and have them come out balanced and correct.

By breaking out all the toys and games, I was able to get through. We help Cyndy put away all the fresh supplies, and took a bath. We had a good day together, and rounded out the night with books and a Sylvia Earle documentary on Netflix.

Today is when I finally get all my teeth fixed up so I won’t have any issues through the end of chemo treatments…or so I thought. Upon arrival I was told multiple times that I had so much work to be done, it couldn’t be completed in one day. The office has a policy of only working on one side on the mouth at a time. Evidently, if both sides of your face are numb, a person tends to chomp holes out of their squishy mount parts.

Rebuilding the crumbled teeth is most important, so left side first. The dentist shot me all over the top and bottom. The entire bottom left quarter of my face is completely numb. They gave me huge glasses too, not sure why, but if they are giving, then I’m taking. My dentist has all the gadgets, he works fairly quickly, but I wouldn’t know, cause I fell asleep during the entire middle of it.

Quite unfortunately, while I was asleep, the assistant got a little generous with the rinse water. So I choked myself awake right as the dentist was trying to seat the cap. He was gracious enough to give me a minute, then let me know that this was a crucial point to hold still. Through everything he was efficient and precise. All the work he did has been thoroughly tested and fits perfectly.

I have to go back in another 3 weeks for the other half, until then at least I can use half a mouth.

I forgot to mention that last week, like this week, I had to get my PICC Line bandage changed. City of Hope Administration finally talked amongst themselves and approved the Newport Beach location to perform some of the maintenance like booster shots and bandage changes.

I still can’t drive, so my partner/chauffeur and my wonderful baby escorted me to the Newport infusion center.

City of Hope has some of the best staff I’ve ever had the pleasure of interacting with. They took all the vitals and changed the bandage in under 20 minutes, and we had good conversation the whole time. Honestly I hope we didn’t disturb the mostly sleeping people getting infused all around us.

So, I now get to goto the Newport infusion center once a week during my off weeks. I guess the doctors are trying to make sure I don’t develop a life threatening infection in the line that goes directly to my heart. Please carry on, dear medical staff.

So it’s been another couple days of building back up, still lots of naps and feeling progressively better everyday. Still on all of the meds, but everyday I feel stronger and I can taste a little more.

Getting ready for the end of the week appointments, I’ll actually be good enough to drive myself in a couple days.

As it happens, my hair can go no further..the baby helped me pull it all out. Kind of like a dandelion chia pet..

The last three days have been a terrible experiment in finding the right balance of medications. If I over do it with prune juice, or eat the wrong kind of food, the typically terrible consequences might not be know for several hours. Then I had to figure out if it was worth it to compensate or just fight through.

I think that I’ve gotten my mix and rules set. These days were always going to be bad days, but getting the eating and nausea under control, it really makes it a whole lot easier.

Either way, the days following treatment are a blur of uneasy naps, discomfort or straight-up misery. Now having gone through one round, I am feeling much better about the next. I have some habits setup and reminders about limitations. I’m ready for the next round, I can’t wait to get healthy again!

I woke up from my pillow tower feeling even worse than when I went to bed. As I took my daily medicines, I started putting the pieces together and realize that I hadn’t done a number 2 in a while. After I mentioned my theory to Cyndy, she googled my medicines side-effect, and there it was Zofran : Constipation…betrayed by my best medicine.

I don’t know if this happens to everyone, but I get fevers proportional to how full of crap I am. My fever was 104 this time, much higher than the doctor wanted. I called the triage line and had a chat. During this chat I found out that the first, and best, line of defense for constipation is prune juice, and that doctors really do like to throw precautionary antibiotics at everything.

After emergency prune juice and some quality alone time, my fever dropped 2 degrees. This was followed by some late night alone time that was a bit more harrowing, but silver lining: no fever.