July 30, '24 - Chemo Infusion #4 of 6
- PSA: 0.03!
- Support: Karen parte deux!
- Aprox cost thus far for the year: $130,000, and one silver dollar paid for a lost tooth
Karen arrived late night Sunday, so I had to retreat to the shared office and abandon the beautiful workstation I’d setup for my support guests. This includes a 49” HDR 1000R Curved monitor… my support staff are living swank. The kids were having some meltdowns while mom was picking her up… so Karen had to say hello to one of them from time-out!
Next day was a work day, so she worked on her side business and ignored all tax cheats (kidding, she’d taken the day off). I got to see how she manages her marketing, and posts new social media vids. My job was struggling with build issues… so I was left in a horrible mood for the next day’s adventure.
Side story and possible blog post was the struggles to get my meds for this round was a PITA due to the insurance company forcing us to use their specialty pharmacy to order online. This caused so much backup and wasted time tryiing to get scripts transferred and an arbitrary 5 day processing time, and shipping delays that the meds have arrived on the last possible day, but only because I fought tooth and nail to get this done. One of which we had to even get an exception to get it from the same local pharmacy, because the online one would have had me missing a week of doses.
All this is to say that going into this cycle there was a considerable amount of wasted time, anxiety, and stress due to unnecessary cost savings of my insurance, and some unruly children that live here.
Day 0 of cycle : injection
The day started quaint enough because I was snuggling with Arya and having a delightful morning, until mom tried to get her ready for school. Then HB was not much better. All sort of fighting and noise occurred trying to get them out the door. This and other items put me in such a sour mood… I was struggling to get up the emotional energy to get through the day, and predicted I’d be bed-ridden by the afternoon.
Chemo was similar to the rest, except Karen and I played a game of chess, with me calling out my moves and her moving pieces for me, since my hands were wrapped in icy gloves. This led to a nice discussion of chess basic strategies and the concepts of the open/middle/end parts of the game. We had some nice discussions on lots of topics, and a very nice call to mom. One thought we had was to write down a list of the top 10 things to make chemo better/more effective/easier.
The sun came out after the treatment and my mood lifted. We had lunch at a pasta restaurant in Kirkland. Then we went home and I mowed the lawn… as is the tradition in chemo.
Day 1 of cycle
Last night went ok, but it was prophetic that the symptoms started off earlier this time. I didn’t have any pain, but I had heartburn from this day forward, and importantly my arms and legs felt like lead weights. This was a portent for things to come.
I took my shot as fast as possible to get it out of the way… but it’s depressing that there were 6 more shots waiting in the fridge. ($200 ea FYI)
Day 2 of cycle
This night I had some super bad nausea. So… for the first time ever I decided it would be ok to take some of the nausea medicines I was given for this purpose. Well, let me tell you, these seemed like I’d taken an opiod! Within 10 min I was ‘loopy’ and very drowsy. I actually sent a text to Fiona and Karen to tell them that if they saw me walking around at night to make sure I wasn’t sleepwalking my way to the car for a night time dream cruise.
Day 3 of cycle
Similar night… but this time I didn’t take the meds for fear of becoming a zombie. Nausea was tamped down with some Graham crackers and water. It was a tough day anyway… everyone was feeling the stress. Fiona got some bad news, and everything parenting wise was tough.
One more issue was exhaustion. I had ‘taken off work’ this week, but really just to set expectations. I actually was able to get a bunch of work done the last two days, but today… I passed out after lunch for a 3 hour nap. This cycle is kicking my butt.
However, HB did have two successes… he completed a 500pc Groot Lego set meant for 10+… and more importantly… lost his first tooth. Well, really it was his first lost naturally. He’s lost a few others due to vitamin gummies. (These are the devil’s dentistry tool)
Day 4 of cycle (Saturday)
Extremely tired.. I fell asleep for three hours mid day… saw Arya off with Fiona to the pool, and Karen watched HB and his buddy hang out at our place. Video games were the main activity.
That night after my nice 3hr nap I simply passed out on the bed while helping with the bath time. So I made my way to bed and slept for 11hr:11min!!! How is that possible!
Day 5 of cycle
Pain, insomnia, heartburn, nausea… my constant companions. HB went with a friend to ride the bike I painted and fixed up for him, and Fiona took Arya to the pool. This gave me time to veg out and try to get some energy back. Pretty certain this day was completely spent just trying to exist.
At night I had insomnia due to the heat, so I curled up downstairs (3° cooler) while listening to a podcast. Finally was able to go to sleep. Woke up to great pain in my hips, familiar to me from the first cycle. So I took an Ibuprofen and went to bed with my podcast. That seemed to work.
Day 6 of cycle
Work day, was surprisingly effective given the past few days. However, I’ve noticed something coming back from cycle 2, loss of taste. Not a total loss as if I’m eating cardboard, but specifically sweetness. This means that when I drink my beloved coffee in the morning with a dash of pure Splenda, I don’t taste a lovely bouquet of the dark roast coco smooth and sweet delight…but an ashtray bitterness instead. Next my bagel with butter tastes like bland paper, and my bowl of raspberries in oat milk with a dash of sugar sprinkled on top tastes like I’m eating hair.
On the flip side of that disgustingly aspect of the day, I think my energy was returning. I took HB for our normal walk, returning rather exhausted but recovered quickly, then it was time for some Narnia book 3 with HB and off to sleep… I hope.)
Day 7 of cycle (final shot)
This day was a bit interesting. I started out pretty high energy, and got kids off to school with their mom. I then proceeded to have a pretty decent workday, accomplishing a few tasks for the team, and assisting some of my teammates with unblocking their own projects.
After preparing most of the dinner I decided to take out the trash and recycling. Yet something was weird. The bags and bins were much heavier than what I perceived them to be, and it was as if my biceps were doing 100lb curls. The muscles felt strained and sore immediately as if I’d been working out for an hour, but it was mere minutes. Taking the bins down our steep driveway was a struggle, even thought this is relatively easy for me normally. When I made my way back up to the house, I found my quads burning as if I were on a high-altitude climb, muscles deprived of oxygen and lungs straining to keep up. I actually had to take a break half way up the 50 foot driveway!
I barely made it back into the house and into a couch to recover. Within minutes the kids returned, and HB rang the doorbell as he loves to do, even knowing how to get inside. There was confusion as to who would go answer the door and this is when something odd happened. It was like having a panic attack, but with emotions. A dark cloud came over me and I got frustrated or angry about the situation and lost my normally cool demeanor for a minute. Next, within seconds, the most sad feeling came over me about it. When HB entered and came over excited to see his dad, I delicately (using all my dad powers) asked him to give me 5 minutes to regroup. Amazingly this was effective and was able to be on my own while the rest sat down to dinner.
I was able to sit down to dinner, but the unexplainable sadness remained for an hour or so… thankfully leaving after my lovely Fiona made me some ginger tea.
These feelings are all normal aspects of hormone therapy, not to mention being under the threat of death for the last 6 months. The doctors say the medicines for prostate cancer basically give you all the symptoms of a women in menopause, complete with hot flashes, headaches, bone pain, nausea, and this recent unexplained mood swing… To all women going through this… I salute you.
Other things to mention
My siblings have given me such joy over the last 12 weeks I can’t explain how it has improved my outlook on this treatment. Comradery and familiarity with common roots and patterns of thinking make for short-hand conversations that seem as easy as breathing. While support from family has been a huge help, it is difficult to slip into another person’s home and assist them on tasks you are unfamiliar with, within schedules that are opaque, varying, and unknown. It is not natural to know how to anticipate a need or step in without asking, providing that extra hand when one was not requested. Nor is is familiar to many how to take over support for a child in tantrum that is not your own. Anticipating a issue before the child has is something a parent can do for their own child, but seems like magic to anyone else, even other parents.
My siblings have stepped up to this challenge and have done a valiant effort for Fiona and I. As these cycles seem to get tougher, I can see how hard the first ones with so much unknown effects were made so much easier by their presence. Yet we have also noticed our own abilities in the negative spaces of this support, where we have actually been able to ‘get it done’ and ‘push through’ without support. This makes me feel proud of myself, but mostly Fiona, who is doing a great job balancing the life of our kids, her PhD, Job, and the extreme stress and anxiety of this treatment and scary morbid thought inducing illness.
The next cycle will start a few weeks from now on a Friday. Which, if the pattern we are seeing continues, means that on the third or forth day I will be under the worst effects. However this time being a Monday, they will be mid week when kids are mostly at school. By that following weekend, we are hoping that my energy will have returned in time for a big birthday bash on HB’s birthday. To this end, and since it is hard for siblings to come out this time, we are going to try something radical, going without support in house. Of course we will have support of DoorDash and maybe a babysitter for that first weekend, but that is all.
I think we can do it, do you? See you in the next update.