Wednesday, April 30, 2014

Update

It's been 8 days since I had my second dose of chemotherapy and this cycle has been mostly predictable, which is a good thing.  The first week was rough as expected but I'm feeling much better today.  If the rest of the cycle follows suit, I'll feel good this week followed by a dip in energy early next week and then feeling decent by the time round 3 comes.  Good day or bad, I start each day by thanking God for all of the blessings in my life (of which there are many) and that sets the tone for the day.

Tiffany's sister Pascha was also in town to visit this past week.  It was nice to see her and I'm grateful that she spent time praying for my healing. 

I did have one issue last week where I felt like my heart was pounding and beating irregularly.  I woke up in the middle of the first night after chemo with a gasp and my heart was beating hard.  I fell back asleep but over the next couple of days it would come and go, especially when I was lying down.   On Friday morning, I decided ("was convinced") to call the doctor and they asked me to come in to get checked out.  I ended up spending most of the day there and at the hospital getting blood work, a chest x-ray, an EKG and an echocardiogram.  Everything came back fine, so they assume it was just the prednisone messing with me and to keep an eye on it.  I felt better by the end of the weekend, so I guess it's another one of the side effects during the first week I'll have to deal with.  

I mentioned in the last post that my hair was starting to fall out and that has been slowly continuing.  It's also still growing, but in a weird and splotchy way, so I have to keep shaving my face and head.

I may keep the shaved head after this is all over


One thing I've been noticing more this time around is the mental/ emotional effect of the chemo and/ or the other drugs I'm taking.  It's difficult to put into words, but in addition to the physical sickness I have the first week after chemo, there's definitely something else chemically or hormonally going on.  I feel emotionally "flat" for lack of a better term.  I'm not sad or depressed because I know in my mind that I have nothing to be sad or depressed about, but it's a very bland feeling where I don't feel happy and things that I know usually make me feel good don't.  Mentally I'm still in a good place and I know I am happy, but I don't feel happy.  It's like the feelings are blocked until about day 7 or 8.  So in addition to feeling better physically, it's such a relief to get back to normal emotionally after the first week.  I  know that one of my anti-nausea drugs is a serotonin blocker and another is a dopamine blocker, which are both "feel good" chemicals, but it usually lasts a few days after I stop taking those.  Whatever it is, I have a newfound empathy for people who suffer from depression.  It's a strange and unpleasant feeling when your mind and emotions are off like that. 

That's all for now.  33% done with the hard part, but who's counting...




Tuesday, April 22, 2014

One Down

Today was my appointment for the second cycle of chemo so I've now officially completed one round.  One down, five to go.  The timing worked out well as we were able to enjoy Easter with family on Sunday while I was feeling good.  It was just Tiffany and I this morning for the 8:00am appointment and the day started with the now familiar routine of vital signs and blood work.  My white blood counts were low last week, which was expected, so they needed to be above a certain level today. Otherwise I would have needed medication to stimulate white cell growth before getting chemo.  Thankfully they were back above the level they needed to be and the nurse proceeded with the regimen.  The whole process still took about 7 hours, but I felt like this time was easier.  Knowing what to expect made a huge difference so I wasn't worried about getting a reaction every time a new drug was added.  I spent most of the time reading and listening to music, although it's difficult to focus on reading with all of the drugs.

Cycle 2 in the shirt from my Spartan family, Al and Collette

I also feel like I have an idea of how the weeks themselves will play out during each cycle.  This takes some of the stress away and the fear of the unknown.  The first week is generally unpleasant, the second week is pretty good, and the third week is when I am the most tired until a few days before the end..  Since the chemo is cumulative, this pattern will get more intense and possibly change, but I'm thankful that I'm not going to feel how I do the first week for the entire 5 months.  The bad days really do make the good days so much better.

As I'm sitting here typing, I've been unconsciously feeling my newly grown beard and noticing the hair on my hands.  My hair is falling out.  It was fun while it lasted, but I'll be shaving it off with the rest of my hair tonight.  This is a part of the process that can be traumatic for a lot of people that go through it, but I'm okay with it.  I can understand why it's hard though.  Up until this point there was no way anyone would know I have cancer unless I told them (or they read this blog) because I still look normal.  Now my appearance will be broadcasting to the world that I am a cancer patient.  Personally, I look at it as a sign that the drugs are doing their job and the hair loss is just collateral damage.  Plus I have some cool new hats and sunglasses to wear.  Maybe my attitude will change after getting the stares and/or awkward comments from strangers, but those things are outside of my control.  I've dealt with minor disappointments in my life in the past by holding to the idea that "my circumstances do not determine my character; my character determines how I respond to my circumstances" and that's how I'm approaching this as well.  Full disclosure: I learned that after dealing with disappointments the wrong way early on.

 I hope this post is coherent because I'm a little "foggy" tonight but I wanted to write.  I'll end with something that my good friend's dad told me after church on Sunday that I wanted to share: "Every setback is just a setup for a comeback."  That is the truth. 

It's all about perspective, so like this song says I'm doin' alright.


Sunday, April 13, 2014

Gratitude, Not Attitude

I'm almost finished with week 2 of cycle 1 of chemo and I can say that this week has been much better than the first.  The first week, while it certainly could have been worse, was tough as I just felt sick, tired and gross every day.  It's not like anything I've ever experienced, so the closest description I've come up with so far is like a combination of having a hangover and food poisoning at the same time ("oh, like a weekend in Tiajuana!" said my friend Pat.)  Of course when anyone asked how I was doing I would say "good" but I guess it's all relative.  My definition of "good' was "not throwing up" which I'm still thankful for.  All of the anti nausea drugs worked well, although they made me cloudy so I tried to stop taking them as soon as I could.  I've also started getting acupuncture treatments every week, which I've really enjoyed.  Recent clinical studies have shown what the Chinese have known for centuries, that acupuncture can aid in treating a variety of conditions including, in my case, boosting immune function and helping with chemotherapy side effects.  While obviously not a replacement for modern medicine, it's useful as a complimentary therapy.  At a minimum, it's the most relaxing hour of my week.  And no, the needles don't hurt. :)

So I started feeling a little better on Tuesday of last week, exactly one week after chemo started. Coincidentally, this was also the day I had somewhat of a revelation.  This experience is teaching me to appreciate life differently, to value each day more because the next 40-50 years aren't guaranteed.  That peace and happiness aren't things to try to accomplish for the future, but things that exist right now.  And at the root of those things is gratitude.  Our culture is built around discontent and always wanting more.  Marketers figured out a long time ago that they can create "need" and drive us to consume more and more so that it will never be enough.  Because of that, it's hard to step back and truly appreciate everything that we have.  It's easier and maybe more natural to focus on the things we lack, to compare ourselves with our perceptions of other people.  I heard it said once that we should never compare ourselves with other people, because it can only result in us feeling either prideful or inferior, and neither of those are positive.

I decided that I would focus on being grateful throughout this experience. Regardless of how I'm feeling or the circumstances around me, I have a lot to be thankful for.  The Bible says in 1 Thessalonians 5:16-18: "Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."  All circumstances, not just the mountaintops.  I've tried to do this on some level in the past and it really does work.  When I would be running a long endurance race or mountain race, I would start praying in my head and thanking God for every possible thing in my life to take the focus off of the physical pain.  It really made the time go by faster.  I've also heard of people getting over major depression by volunteering to serve others in need.  I suppose it works in the same way by taking the focus off of self and providing perspective.

Being thankful while carrying a 60 pound sandbag up Mt. Killington

Being thankful crawling through the mud with Al (who is wearing shorts by the way)

Here are just some of the things I'm thankful for right now:  I'm thankful that we're having a boy in September!  I'm thankful that my last round of chemo is in July and I'll be recovering when he's born.  I'm thankful for my beautiful wife and daughters.  I'm thankful for my supportive family, church family, friends and coworkers. I'm thankful for good benefits at work.  I'm thankful that the weather is turning here and I can be outside in the fresh air.  I'm thankful for dark chocolate.  I'm thankful for modern medicine and my medical team and also that this isn't a death sentence like it was 50 years ago.


That's just a small sample.  But if you're reading this and you're going through a trial I would encourage you to try it too.  Surely you have things to be thankful for and meditating on those things can release a healing chemical reaction in your body, mind and spirit.



Thursday, April 3, 2014

Chemo Cycle 1

Before starting chemotherapy on 4/1, Tiffany and I wanted to get away for one last weekend to just relax and be together.  The prior four weeks had been busy and stressful in addition to the unknown ahead, so we were really looking forward to it.  We spent the weekend at Church Landing in Meredith, NH in a room overlooking (frozen) Lake Winnipesaukee courtesy of some unexpected generosity from friends.  We are also appreciative of our parents who split up the weekend watching the girls.  While it was supposed to be a cancer free weekend I'll admit the topic may have still come up a few times, but we had an amazing time.  Tiffany wrote more about it here.   We came home on Sunday refreshed and ready for the next step in the journey. 

Monday night we had a small gathering with family and friends which was really nice.  It felt kind of like a send off even though I'm not going anywhere.  Everyone enjoyed pizza and cupcakes, lots of hugs and a nice prayer and then it was time to get home to get a good night's sleep.  Tiffany asked me again that night if I was nervous about the next day and I really wasn't.  I'm not trying to sound overly tough because trust me I deal with anxiety and fear like everyone else.  The only explanation for the peace I felt is the amount of prayer that has been and is still being sent up for me.  The verse I shared in the last post, Phillipians 4:7 mentions this as "the peace of God, which transcends all understanding."  I slept great that night and then we were up early on Tuesday to get to the Lahey Clinic by 8:00am.


Tiffany, my mom and I arrived at the office and were taken back soon after.  I chose the recliner in the far corner of the infusion therapy room, which is basically a room filled with big reclining chairs separated by curtains.  Each little station has it's own TV, along with pillows and blankets to make you comfortable.  I brought my bag filled with books and electronics to pass the time over the next 8 hours.  My nurse for the day, Shelley, came over and introduced herself.  I started with some Tylenol and then she "plugged" me into the IV through my port.  I was shocked at how much this hurt and she gave me some numbing cream to prep the area for the next time I came back.  Next came the Benadryl through the IV followed by one of the anti-nausea drugs, Aloxi and a steroid.  After that came the Rituxan, which would take 4 hours to deliver for this first time.  I quickly felt drowsy from the Benadryl and then cold, so I was given a couple blankets and just sat back.    I felt a little weird, almost like when you know you're about to be sick but it hasn't come on yet, but nothing major. During the morning, I met with Dr. D'Silva, the nurse navigator, the social worker, and the nutritionist who all came over to talk.  Everything went fine for the next couple hours and Tiffany and my mom left to go get lunch.  The clinic provided lunch and snacks during the day and I was able to eat with no problems. I tried to read a little (finally almost finishing "The Last Pick" by Dave McGillivray) and mostly just dosed in and out.


The next two drugs were "push" drugs, where the nurse injects the syringe directly into the IV (versus having a bag with a slow drip).  Those went in quickly and were followed by another anti nausea drug called Emend. The last one was another slow drip one but it would only take an hour.  Once that one was finished we were cleared to go as I would be taking the Prednisone at home for the next 5 days on my own.  I felt ok, although I had the sense of being pumped full of chemicals.  Once we got home, I was pretty tired so I took a nap and then had dinner.  I still felt a little cloudy the rest of the night, although the Prednisone can make you hyper, so I took an Adivan and an anti nausea pill before bed to be able to sleep that first night.  The rest of the time I'll be taking the Prednisone in the morning.

The last two days have been OK.  I've been taking all my medicine to deal with the side effects religiously and so far so good.  I've also been drinking my green drink every morning and night (made with all organic kale, spinach, celery, cucumbers, parsley, apples, ginger root, lime juice and lemon juice), drinking lots of distilled water and making sure I get enough protein (chocolate almond milk and organic grass fed whey protein shakes.)  Feeding my body right is going to be more important than ever these next few months, so I've also been avoiding processed foods and sugar (mostly - I may have had a few Cadbury mini eggs that came with our dinner last night :) )  The most annoying part was getting these nasty hiccups every time I ate yesterday, I think 5 or 6 different times.  I heard it may be from the Zofran, which is the anti nausea drug, so it's still a trade off that I'll take.  Today has been better though.  I even went for a 30 minute walk this morning since it's warming up somewhat here.  Supposedly days 7-14 are the "nadir" or low point at least energy wise, so we'll have to see what that looks like and then I'll start quickly losing my hair around day 15 they said.  I'll be ready with a new Patriots hat from my mother in law and a nice new Red Sox hat that came in the mail yesterday (thanks Robin!)  That's all for now and thank you for your continued support!

Warning: this song is extremely hard and aggressive. The message is positive, a take on Psalm 23, but it's delivered angrily, a kind of righteous indignation.  It's called Fearless and it really speaks to me to know that God is with me during this time and the tone fires me up for this fight.  I know that probably most of my readers would approve of the content but object to the style, so I want to be respectful of that.