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Cancer

The Real Recovery Challenge

What’s worse than loosing all your taste and smell, having the entirety of your stomach and intestine lining all die at once. Having all three happen at once is a special experience that I would not wish on my 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 going through their recovery. It’s the digestive tracks turn to be completely down. 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 alternatives, and I choose to be thankful. It’s so rough, but I can definitely handle this, especially thanks to my 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 alive.

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Cancer

Proper Medicinal Management

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 uncomfortable, but way better than the first cycle. However, I was about to get a upgrade in my understanding of this chemo recovery process.

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Cancer

Hospital Week 2

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 wisks 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 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 phone.

I did end 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’ that is the next 7-10 days. Something tells me this cycle is going to be even more rough than last round.

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Cancer

The First Moment of Truth

After a fairly pleasant weekend, it’s time to head back into the hospital for the second cycle. Which, after another negative covid test, happens to suddenly be mid-morning. 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 and only indicator of progress in this treatment battle. It should be less than 10 in a normal adult male human. 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 come in till well into the evening. The doctor told me last cycle that the expected result from the text book would be that the AFP should be around 80,000 in my case. Which is almost precisely what my numbers are. I am proceeding at a text book pace. It’s a place that I am super excited to be.

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Cancer

A Free Day

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 Waylen and 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 negotiation table. Eventually I would learn to cope, but it’s not easy to train a 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.

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Cancer

Dental Work for the Win

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. At the very least they have a company policy of only working on one side on the mouth at a time. Evidently, if you numb both sides of your lower jaw it becomes super easy to chomp large holes out of your tongue.

So the teeth rebuilding is more important, the left side is first, shot me in 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 gave them I’m taking them. 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, I actually started choking on some errant water the assistant was spraying. So I choked myself awake right as the dentist was trying to seat the cap. He was gracious enough to give me minute, then let me know that this was a crucial point at which 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.

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Cancer

Bandage Pilgrimage

I may have forgotten to mention that even last week I had to get my PICC Line bandage changed. They finally talked amongst themselves at City of Hope 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 for City of Hope.

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 have to make it to the Newport Beach infusion center once a week on my off weeks to make sure I don’t develop a life threatening infection in the line that goes directly to my heart. Fair.

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Cancer

The Build Up

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.

This also happens to be as far as my hair goes..the baby helped me pull it all out. Kind of like a dandelion and a chia pet.

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Cancer

Finding the Balance

The last three days have been a terrible experiment in finding the right balance of all my medications. If you over do a prune juice, or eat the wrong kind of food, you might not know about the consequences for several hours, then you have to spend time figuring out if you can compensate or you just have to fight through.

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

Either way, these days following treatment are a blur of naps and 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!

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Cancer

Side Effects

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 is 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.