Thursday, June 26, 2014

Updates, #5 Down, and Bald Eagles

In my last post a couple weeks ago I talked about dealing with an increase in the chemo side effects.  It did get better after that first week and I went along with life as usual (as much as can be expected during this phase of life.)  I noticed that I never really seemed to gain back as much energy by the end of the 3 week cycle as I had in the past, which is something I was aware would happen.  After the first couple of cycles I would I say I got back up to 80-90% of my energy levels by the time the next treatment came due.  This time, when it came time for cycle #5 yesterday, I was maybe at 75% and my white blood cell counts were the lowest they have been so far on treatment day (but still above the threshold where I could get the chemo.)  My eyebrows are still thinning while hanging on for dear life.  I made a comment to Tiffany while looking at some recent pictures that I'm actually looking like a cancer patient now.  I'm not self conscious about it because what else should I expect to look like now, right?

I went in for round 5 yesterday and the good news is that after 24 hours I'm feeling better than I did last time.  Chemo is mysterious in that other than it being cumulative, the doctors and nurses can never predict how you are going to react to it physically.  That doesn't stop me from asking every time, but the answer is always "everyone responds differently."  It's like that warning on mutual funds: "past performance is not a guarantee of future results."  But that leads me to believe there are things I can control and ways I can prepare my body that may help.  I was admittedly more lax with my nutrition last time before cycle 4 and possibly overdid it with the amount of activity in the days leading up to treatment (got a little overconfident after the good news about being in remission already), so I focused on those areas this time.   I made sure to eat as clean as possible in the 72 hours leading up to chemo, cleanse my system with lots of green drink, and hydrate with distilled water.  I also got a vitamin B12 and B6 shot at acupuncture on Monday for energy (B12) and nausea (B6.)  I tried to rest more this time (in between selling one of our cars and buying a minivan last week.)  The evenings are usually the worst, but so far so good.  Thank you for all of your continued prayers.

Round 5 in my new Suvivor shirt - thanks Jen!

This past Sunday our church also hosted a head shaving event and fundraiser for us called Operation Bald Eagle.  Words can't express how grateful we are and it's a day that Tiffany and I will remember forever.  I'm not sure how many people had their heads shaved, but it was way more than I expected, and even included some people who I had never met before who were moved by our story.  People also donated desserts that were auctioned off, along with sponsors who donated items for the auction and raffle as well as t-shirts that were sold.  The local news even showed up and I ended up on TV that night (further solidifying my reputation as a slow talker...awesome.)  There were so many volunteers that helped with the organization and execution of the event and I pray that you will be blessed a hundredfold for your sacrifices.  Special thanks to my parents for their hard work and passion about this.  Also special thanks to Bill Traver for creating that J Strong logo when this all started - as you can see below it was used all over the event (your royalty check is in the mail, buddy.)

At Operation Bald Eagle

Brother in law, sister in law, cousin and nephew getting in on the action

With my uncle Jeff after he shaved off his ample head of hair...
My sister is one of the hardest working moms, nurses, volunteers I know

At this point, while I recover over the next week or so, I can still say I only have ONE MORE round of chemo left, so I got that going for me, which is nice.  :)

Sunday, June 8, 2014

One Day at a Time

I'm an optimist.  I try to look for the opportunity in every situation and view the glass as "half-full" for the most part.  That's how I'm wired and I know it has helped me keep a positive attitude throughout this ordeal.  Perspective is important when dealing with any trial, because no matter what, it could always be worse.   But I also want to be realistic.  I can recall one time shortly after I had my surgery where I was a little too optimistic and not realistic enough.  I had a visitor and I started not feeling well, but I kept saying I was fine.  I wasn't very convincing, so luckily she didn't believe me and left me to rest before I likely would have passed out. 

Having said that, this past week has been rough.  I had my fourth round of chemo last Tuesday and round four definitely packed more of a punch.  The infusion takes all day, so I was at the clinic for the usual seven hours and everything went fine.  A couple hours after I got home, though, the nausea came on really strong.  Up until this point, the anti-nausea drugs did a good job of managing it, so I wasn't really prepared for it to hit like that.  I spent the rest of the night curled up on the couch.  After a fitful night of sleep, I woke up the next day around noon.  I can't remember the last time I slept past 9am, let alone noon.  I overheard Tiffany telling the girls to sit down and eat, so I figured it was for breakfast, but she was feeding them lunch when I woke up.  I still felt awful and spent most of the day on the couch.  I tried to keep up my routine of nutrition and hydration, and even managed to get out for a short walk, but all of the symptoms were just more intense this time.  The next night I couldn't fall asleep until close to midnight and then I was up the next day at 4:30am.   The combination of the chemo drugs that make me sick and tired and the steroids that make me agitated and unable to sleep is, well, unique.  I joke that when I lose my patience with the girls (which happens much more easily the first week after chemo) and try to yell at them to stop coloring on the windows/ stop stabbing the TV/ etc., I physically can not raise my voice so my I'm forced to just let it go.  Silver linings.

I know, how could anyone lose their patience with these little angels?

The nausea started going away on Saturday which was a relief.  The other thing that came back this time was the emotional blandness or void that I initially talked about a few weeks ago.  I've since learned the clinical term for it: anhedonia.  It's defined as "the inability to experience pleasure from activities usually found enjoyable, e.g. exercise, hobbies, music, or social interactions."  This describes it perfectly.  My doctor prescribed me an antidepressant earlier, but I've decided not to take it.  Mentally, I know what the source of the problem is and I know it's a temporary thing, so that allows me to push through.  The antidepressant would take about six weeks to start working anyway and by that time I'll be almost done with chemo.  I just wasn't comfortable with changing my brain chemistry only to turn around and have to wean back off of the medication again. 

I've been trying to figure out why this cycle was harder than the others.  Did I overdo it last weekend by running the race?  Did I get overconfident from the good news about being in remission?  Did I lapse too much in what I ate and drank before Tuesday?  I missed yoga and acupuncture last week, so maybe that was it.  Or it's just entirely possible that what they say is true and chemotherapy is cumulative, so it's just going to get worse.  I try to look for whatever control I can have over the situation, which is natural I guess.  In this case there is very little that can be controlled, so I just have to take each day as it comes and continue to persevere.  There is a light at the end of the tunnel.

James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.”