Last Chemo

Landing in the hospital only ended up pushing my last chemo treatment by 8 days, so I was recovered enough to go in for it on July 22nd.  I started the day with a quick run/ walk before getting ready, which I always do on treatment days.  I do it at the recommendation of Dr. D'Silva from early on as a way to increase oxygen intake and prepare my body for the chemo drugs.  Apart from the other obvious benefits of exercise, it also gives me a mental boost to be able to do it and show myself that this can't break me.

Tiffany and I arrived at the clinic around 8:15am and were brought back for the familiar routine.  I always show up with a positive attitude on treatment days as there's nothing really pleasant about it in and of itself.  It's another aspect that's within my control in the midst of so much that isn't, so I choose to be happy on these days.  The staff and nurses also do a great job of maintaining a positive environment at the clinic, which makes a huge difference.  My nurse this time was Shelley, who was also assigned for my very first treatment, so it seemed fitting that she would be with us for the last one.  My blood counts were good, which was expected after all of the medication the week before to stimulate white blood cell production, so I had the green light to start my last chemo.   

Ready for the last one

Above everything else, I would say I felt relieved.  Knowing that the cancer is in remission and that this was the last treatment, I just wanted to get it over with and start the recovery process.  The day itself was pretty uneventful until the end.  Once everything was finished and I was unhooked from the IV, a few of the nurses who were still there came over to celebrate with confetti and a cake.  It was a special moment to culminate all of the events of the last 5 months.  I even received a certificate for "graduating."  After a few hugs and some pictures, we were off to start the recovery process.  I spent the next week or so dealing with the now predicable side effects but have started to feel much better over the past 2-3 days.

With Tracy, Katie, and Shelley after finishing

With Dr. D'Silva

My "diploma"

The big question is "now what?"  That's what I've been asked the most and the same question I asked Dr. D'Silva.  Physically, I'll regain my energy and strength over the next several weeks as the good cells that were killed off by the chemo regenerate.  I'll have to return to the clinic every two months for the next two years starting in September for my "maintenance regimen."  This involves getting a dose of the Rituxan only and will take about 4-5 hours each time.  Rituxan is one of the drugs I've been getting, but it is not one of the toxic ones and doesn't come with the side effects of the other drugs.  It's a monoclonal antibody that identifies certain cells that contain a specific protein that the lymphoma cells contain and marks them for the body's own immune system to destroy.  Getting this every two months for two years after chemo has proven to extend the remission period significantly.  I'll have to get scanned once a year for the rest of my life, but I expect to not have to deal with this for quite a long time based on how everything has gone and the research I've done.  Plus Dr. D'Silva told me that we'll be getting together for a drink in ten years.

So my focus going forward is on recovery, healing, and rebuilding my strength and fitness level.  I've tried to keep myself from deteriorating too far, but my body has been through a lot this year, especially considering the damage from the surgery in March, so I know the road is going to be slower than I want.  I'll still continue to post here from time to time, even though the dramatic part is over.  I have some thoughts about how this experience has changed my outlook among other things, so I'll keep the blog up and running.  I'm also anxious to recover so that I can use my experience to help other people. As those opportunities come up I'll also use this space to share.  For now, thank you again for your support and sharing this journey with us. 

Isaiah 43: 1-2 "But now, thus says the Lord, who created you, O Jacob, and He who formed you, O Israel:

“Fear not, for I have redeemed you; I have called you by your name;  You are Mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.  When you walk through the fire, you shall not be burned, nor shall the flame scorch you."

Relevant message in this song below (although it is hard, so you probably won't like it unless you like awesome metal.)  The only line I don't agree with is "pure strength through solitude" because I've drawn so much strength from others and God during this trial. 

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.  :)

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.”

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.

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.  

Chemo Class

Yesterday we had an appointment back at the Lahey Clinic for what they call a "Chemo Teaching Session" where we would learn all about my upcoming treatment and have an opportunity to ask questions.  As usual, I brought my entourage: Tiffany, my parents, and my mother-in-law.  Now I have to admit that this is the part of the process that has me the most concerned so far, specifically how my body is going to react to the chemotherapy .  As soon as I found out the regimen that I would be taking, I started doing research on my own and seeking out others who had gone through it.  There is a lot of information out there on reputable websites (www.lls.org, www.cancer.org, www.livestrong.org. www.chemocare.com) as well as a lot of less than reputable sites.  I've also been fortunate enough to connect with a few lymphoma survivors who have shared their experiences with me and offered advice and encouragement.  Some who are friends of friends as well as through the Leukemia and Lymphoma Society's First Connection program.  My favorite, non-scary piece of advice so far came from a friend of my cousin's, Holly, who said she would imagine the long day of chemo as if it were a spa session.  I never would have thought of that, but hey, it's worth a try.

So back to the teaching session, we were led into a conference room and joined by Colleen, the nurse practitioner, and Katie, the nurse navigator.  Katie's role is basically to be a single point of contact for me and my family to answer questions as well as coordinate all aspects of my care.  We were all ready to take notes, however she had already put together a very comprehensive binder of information which she handed me as I sat down.  They first discussed the schedule; I would be coming in every three weeks beginning on April 1st for the chemo and then coming back the day after every time for a quick shot of Neulasta, which stimulates white blood cell production in the bone marrow.

The binder

Next we learned about what the treatment itself will look like.  Basically I will be a walking (hopefully) pharmacy.  I will start taking a drug called Allopurinol a couple days before the first treatment, which will essentially prevent the dead cancer cells from damaging my kidneys due to the size of my tumor.  On the day of treatment, I'll start with an anti-nausea /anti-anxiety drug before I leave.  Once I arrive, I'll be connected to an IV through the port in my chest and get 5 more drugs before the chemo even starts.  These consist of an antihistamine, a pain reliever, 2 more anti-nauseas (seeing a theme here), and a steroid.  After that, I'll begin the 6+ hour process of getting my chemo drugs, R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin (apparently the brand name starts with an 'H'), Vincristine (Oncovin), and Prednisone (which I'll be taking by a pill for the first 5 days of every cycle.)  Once I'm all loaded up, I'll be able to go home although there's a slight chance the first cycle may be done inpatient.  I will also have 2 more prescriptions for more anti-nausea drugs to have on hand at home (definitely a theme.)  

We then learned about each chemo drug individually as far as their purpose as well as side effects.  I will be highly toxic for the first 48 hours so I'll have to be very careful during that time (they gave me a sign to hang in the bathroom that says "48 hours after chemo - FLUSH TWICE!!" with a picture of a toilet on it. Thanks.)  After that it varies by the person, but I could have to deal with fatigue, weakness, nausea (got pills for that though), mouth sores (I'll get to rinse my mouth with a delicious mix of baking soda, salt, and water three times a day to try to avoid these), constipation, and irritability, along with the expected hair loss (I'm in the market for some hats right now.)  Days 7-10 of each cycle will be what they call the nadir, or low point, of my blood counts and immune function, so I'll be at high risk for infection and will have to be extra careful during these days as well.  One thing that they kept reiterating was to call the office immediately if the side effects weren't manageable and that the goal was to make sure I made it through as comfortably as possible, which made us all feel good.

We had a chance to ask some questions and then the session was over.  Knowledge is power, and we all left with a greater understanding of what to expect as well as a better comfort level overall.  One week until cycle 1 starts and I am anxious to get it started (so it can be finished.)  Next on the schedule is the second opinion with Dr. Abramson at Mass General on Thursday and then Tiffany and I are taking a little weekend away before treatment starts while our parents watch the kids.


"In the middle of the storm, I am holding on to you..."