IdeaWebb

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.

The next morning, it’s very apparent that I need some pharmaceutical intervention. A quick call to the nurses at City of Hope and I had CVS calling me about my prescriptions being ready. Karma for missing them in the first place?

I haven’t really been eating well so I’m hitting the Ensures to get something to stick. The Zofran prescription helped with the nausea fairly well. I was able to eat a bit more, but nothing’s perfect, I threw-up a couple more times, but as the doses built on one another, it keep getting better.

I still felt terrible, but now I had significantly less nausea, which is always better. As I ate a couple more meals I started feeling a mounting discomfort. At this point I couldn’t tell what was happening inside my body, but I’d figure it out soon enough..

Technically the first day back started Sunday afternoon, but really, it was just a lot of hugs and sleeping. The meds from the hospital were still in full effect, and I ate a sandwich, no problem.

Monday, was really the first day out of the hospital, and it was starting to show indications of things to come. I should also mention that I got sent home without any medications of any kind. I later found out that there was an oversight, not that my doctor thought I was such a rockstar that I simply wouldn’t need any medicinal help (as I originally thought). Several of the care packages that I had received included over-the-counter anti-nausea aids…they were not enough, and I burned through them at a spectacular rate.

I tried eating and tried not throwing up, it wasn’t meant to be…I can’t taste anything and I feel so physically weak, it’s hard to pull the top off a can of soup. I alternate between extremely tired and violently ill. Somehow I made it to bedtime, and was able to take Prilosec, which I have to say is a performer in and out of the hospital. Propped up on a pillow tower, I can get some sleep, only waking to get back on the pillow tower which is a constant battle..

So, the rest of the week was fairly uneventful. As treatment goes on, you can start to feel the massive die off of cells. It gets harder to want to eat, and you are progressively drained of energy. No big deal, that’s what it always is for everyone, plus while in the hospital you get the powerful meds to really minimize the discomfort. The difficult part is yet to come.

I couldn’t overcome the water retention just walking around, so I got a dose of Lasix to get the extra fluid out. Seemed to work out fine, but next cycle I’m definitely walking around from the beginning! Turns out Lasixs are super hard on your kidneys.

As the last two days roll around, I was past ready to go home and be with the family. The deep pains, malaise, and thorough destruction of taste and smell really do a lot to make a person want pack it in early. Thankfully, I have such an outpouring of love and support that I can mentally get through just about anything. However, it doesn’t hurt to have a very determined and somewhat aggressive nursing staff that will make sure you are taken care of.

I’m looking forward to Sunday, the morning after the last infusion. I get discharged after the last tests come back clean, around noon. Dad comes to pick me up, and after an obligatory wheel chair ride, I’m in the car for what turns out to be a rather pleasant ride home.

Now the real challenges will begin…

So after getting to know the staff and procedures around the hospital, I’m feeling fairly comfortable. Since arrival, I have been getting infused with salt water, no exception or break, to keep me at maximum hydration. Which I didn’t realize can start to pool in your lower extremities, specifically in joints. Now all my lower joints are tight and achy, and I’ve gained almost 10lbs.

The easy solution is walking around a little bit…unfortunately I didn’t know this effective trick, so I’ve been sitting or laying down since I got here…all bad. Now I’m cruising around the halls of the hospital, and I see a open door to the outside. I haven’t been outside or gotten any sun since I checked into this place, so I immediately take the opportunity. As I’m dancing around the little courtyard I find myself in, with my super expensive infusion rack, a security guard comes over to me with a little worry in his eyes. He informs me that not unlike a prison, I’m not allowed to be outside, and that I need to take my immuno-compromised body and connected infuser and get back inside immediately. As I go back inside, I realize that the little chair next to the door was probably where he should have been sitting to prevent me from leaving in the first place, but I’m glad for his lapse…it felt amazing to be in the sun for a bit.

They finally moved the infusions up, maybe I’ll get some good sleep tonight. We’ll see 🙂

I slept well past the cafeteria opening. Which is normally not a big deal, but it makes them very nervous when people getting infused don’t eat. I received several increasingly concerned phone calls, inquiring why I hadn’t yet ordered food. Honestly, the menu is pretty good for a hospital. It takes a minute to pick something when you’re not that familiar with the choices, especially in between getting all the morning tests and labs done.

Today, I also have to do a testicular ultrasound on the one that’s left…also it’s the left one. Strictly as a triple check. The end of the story is that there is such thing as too much ultrasound gel, and it’s a little disheartening to have all your good parts discussed as ‘unremarkable’.

Getting ready for the nights infusions! Going to be so great, especially since I can literally feel the neck tumor softening. Same routine, they can’t start the infusion until almost 10:30pm. They are going to get doctor approval for tomorrow’s infusion to get moved up 2 hours. We’ll see how it goes 🙂

The next morning I’m ready for the PICC line to be installed. It’s nice and quick, then blood can be drawn from it as well as chemo administered through it. It’s especially nice that I don’t have to get poked twice a day for blood draws. The only maintenance is a weekly bandage change, not too bad.

They eventually switch the chemo to the PICC line, instead of the peripheral. I feel pretty good still, but I did get a bunch of preventative meds, even one that doubles as an antipsychotic! I’m such a lucky guy.

As the first infusion of Paclitaxel finishes infusing at 9:30pm, they are getting me ready for “the big guns”. Now four different anti-nausea medications. These infusions are much shorter, an hour for the Ifosfamide, and half hour for the Cisplatin.

It’s after 2:30am before the infusions finish up, and I finally fall into an uneasy sleep…until my next vital check.

Evidently Mondays are the busiest days for being admitted to the hospital. So, my admittance got pushed to Tuesday. With how fast this cancer grows, everyday counts.

We were glad to hear that we had a confirmed admittance Tuesday afternoon. I would still be able to get the chemo started on the same day, which was most important to me, just get this started before they get any bigger. There was some debate among the nurses on how to best deliver the chemo, considering that it’s pretty harmful to vein integrity.

A PICC line (semi-permanent IV that goes through the inside of your arm, between the bicep and tricep and drops a line all the way to your aorta,) was recommended, and scheduled for install the next day.

In the meantime, I got a peripheral IV. Good enough to start all the anti-nausea, steroids, and electrolyte balancing infusions.

Finally, at around 9PM, I got my first infusion of chemo started, Paclitaxel. Thus begins the 24 hour infusion. I try to sleep, but I’m fighting the end of a cold, and there are tons of noise from the hallway, so it ends up being a fairly terrible night.

Around 4AM I got some Ibuprofen, and that helped a lot. Still have to keep waking up for vitals (blood pressure, O2, temperature, sometimes weight,) to be taken every 4 hours.

Suffice it to say I had to make some rather large adjustments to survive that first night. But, I’m on my way!

Monday finally rolls around. I spend the day trying to get work done and not think about the afternoon appointment or the subsequent conversations.

It’s finally time to make the hour and twenty minute trip to City of Hope, Duarte, the main campus as it’s called. After getting through the COVID screenings, I get all the vitals taken and give a brief history to the attending nurse.

Couple minutes later, the head honcho walks in. After a chat, she indicates that treatment will have to be more extreme that last time…a full 5 days of in-hospital infusions and constant monitoring. Minimum, four cycles of one week infusions followed by two weeks at home. Additionally, treatment would have to be done at the Duarte campus.

My family and I want the best treatment from the best doctors, so the choice was made. I would become a temporary resident of Duarte for a month over the next three months. The ramifications of this treatment course start to sink in as Cyndy and I talk. Thinking back, I haven’t spent more than seven nights away from Cyndy in almost ten years. A sad substitute is the excellent wi-fi for video chatting. Sacrifices must be made…