Tuesday, September 23, 2014

Update and an Appeal

First an update:  I'm writing this from the clinic while getting the first dose of my "maintenance therapy", which I'll get every two months for the next two years.  It consists of one drug, Rituxan, which is an antibody that targets certain cells to keep the cancer from coming back, at least for a long time.  Since my last post, I've been back at work full time and slowly getting back into normal life.  The surgery to open the collapsed stent in my artery was a success and I can now jog without my left leg going numb.  I've also been going to physical therapy a couple times a week to regain strength in my legs and core to be able to get back into running.  Everything has been going smoothly, I just have to remember it's a slow road back and not to overdo it.  They say it's a minimum four months to around a year until I'll regain my full strength.  My physical therapist said the top priority right now is to "reign me in."

The most important update is of course the birth of baby #3 - our son Dax Joseph was born on 9/4.  He is perfect in every way and we're enjoying being a family of five (despite the obvious adjustments!)  Tiffany is doing great and powering through the sleep deprivation phase right now like a champ.  Life continues to go on and I know there are great things in store for us.  The three most important things that got me through the cancer diagnosis and treatment will continue to get us through whatever challenges lay ahead: strong faith, a positive attitude, and a sense of humor.




Next I want to make an appeal.  I'm participating in the Light the Night walk to benefit the Leukemia and Lymphoma Society on October 2nd.  I'm trying to gain sponsors  in order to support this great organization that has been such a huge resource for me during this time.  I owe my long term survival chances to the recent medical breakthroughs that have been funded and promoted by them.  I'm blessed to know so many generous people, so if you have the means, please consider donating here - even the smallest amount will make a difference! http://pages.lightthenight.org/ma/Nashua14/JDeLangie  Thank you!




Tuesday, September 2, 2014

What Is Mesothelioma?

Now that I'm officially finished with my treatment and setbacks (no more setbacks!), I'm looking forward to being able to give back and help others.  One of the ways I hope to be able to do that is to use this space to bring awareness to certain causes, especially dealing with cancer.  To that end, I was recently asked to participate in a campaign to raise awareness about mesothelioma, which is a preventable type of cancer that is only caused by exposure to asbestos.  Having a relative who is a mesothelioma survivor, I was more than willing to help out and I learned a few things as well.


Up until now, the only thing I knew about mesothelioma was what I saw on TV commercials for lawsuit settlements.  The fact is that asbestos causes cancer; this type specifically.  I was shocked to learn that asbestos is not banned in the United States.  That seems like it would be a no brainer.  It should go without saying then that you should avoid any contact with asbestos, as total avoidance is the best prevention.  The truth is that even minor exposure can be deadly; it's not only an issue for people who worked in factories and had contact with it for years.  While it's not used even close to as much as it was in the past, it can still be found in old buildings.  Living in New England, we have plenty of those.  

Mesothelioma can also lie dormant for 20- 50 years before symptoms start manifesting, so if you had exposure years ago, don't brush off the symptoms (low back pain, side chest pain, shortness of breath, in addition to many others.)  The current five year survival rate is a low 10%, but that goes up significantly when the disease is caught in the early stages.  That is a sobering statistic, and even more reason to take asbestos exposure seriously.

For more information, go to www.mesothelioma.com


Sunday, August 24, 2014

Angioplasty

I mentioned in my last post that I found out that the stent in my iliac artery had collapsed and another surgery was needed to fix it.  Anything more than a casual walk caused my left leg to go numb because not enough blood could get through to deliver oxygen to the muscles.  The procedure would be an angioplasty, where they would insert a wire with a small deflated balloon on the end of it into my femoral artery and feed it up to the scene of the crime.  Once it was in place at the collapsed part of the stent, they would inflate the balloon, which would open the stent, hopefully permanently.  The surgery was initially scheduled for last Tuesday, but was delayed until Thursday 8/21 because the surgeon had an emergency case that came up.  I was anxious to get this over with and a little disappointed to have to delay my recovery another few weeks.  Compared to everything else that has happened this year, this is not a big deal, but when I found out I needed surgery I thought "seriously? Another thing?"  Even though I didn't feel particularly filled with faith, I forced myself to revisit the verses that have encouraged me over the past year, including Psalm 16:8, "I have set the Lord always before me.  Because He is at my right hand, I will not be shaken."

When the day finally came, Tiffany and I arrived at the hospital around 8:15 and got checked in.  They brought us back into the surgical prep area and I got dressed into the familiar purple paper gown.  I filled out some paperwork and the anesthesiologist gave me some pre-meds while I waited to get wheeled into the operating room.  I remember getting into the OR and saying hi to a few people in there and then waking up about 30 minutes later in the recovery room.  The first thing I looked for was the clock, and the fact that the procedure only took 30 minutes made me happy.  I realized I couldn't move as they had attached a clamp to my hip in order to keep pressure on the incision, so I just dosed in and out of consciousness until they brought me to a room.  I was initially told that I would have to stay overnight, but Dr. Hoepp said that if I was feeling well and could walk by 4:00 that afternoon, then I could go home.  After eating lunch, I pretty much slept most of the afternoon.  Right about 4:00, one of the physician assistants came to see me and I was discharged.

Pre op selfie

Since then I've felt pretty good.  I have to delay my physical therapy for another couple of weeks, but I'll be able to return to work tomorrow and start my real recovery.  Baby Boy is due in about a week and a half, so I'll be ready when he gets here. 



Saturday, August 16, 2014

But wait...there's more!

This post is coming from about 20 feet from the Atlantic ocean while we are on a short getaway at a resort in Maine (just Tiffany and I.)  After two unsuccessful attempts at a 10 year anniversary vacation, we finally made it.  Despite everything that has happened this year, life is good and we are incredibly blessed.  I had actually planned for this post to be about what I've learned and how my outlook has changed for the better after going through this, but that will have to wait a little longer as life continues to be interesting.

Room with a view


If you've ever seen an infomercial, you're familiar with the phrase in the title.  The host will excitedly talk about the benefits of his or her revolutionary new product that you can not live without and the ridiculously low price that you can have it for.  And just when you think it can not possibly get any better, he or she drops the phrase "but wait...there's more!" and reveals that if you call in the next hour, you will get double the amount/ a Snuggie/ etc. for free.

As I've been sharing my story over the last five months, I feel like any one of the things that has happened is pretty unusual and/ or unlucky standing alone.  Getting blood cancer at 34.  With two toddlers at home.  While my wife is pregnant.  Losing half of my blood and almost dying during the biopsy surgery. Going back in the hospital for blood transfusions.  Going back in the hospital a third time with an infection and high fever toward the end of chemo.  When combined together it's pretty incredible although I still haven't taken the time to sit down and fully reflect on everything.

After my last chemo treatment on July 22nd, I was eager to close this chapter of hardship and start the longer term recovery process.  Unfortunately that will have to wait a little bit longer as I found out this week that I'll need to go back for another surgery.  It turns out that the stent that was inserted into my iliac artery to repair it when it was damaged during the biopsy surgery has collapsed.  So instead of keeping the artery open, it is creating a bottleneck and slowing down blood flow to my left leg.  In order to fix it, I'll need to have a procedure called angioplasty where the surgeon inserts a wire into the artery and inflates a balloon that will open the stent (hopefully permanently.)  If everything goes well it should only require one night in the hospital.

I first noticed there was a problem a few weeks ago when my left leg would start getting numb after about 2 minutes of running.  I've mentioned before that after I was healed up from my initial surgery, I tried to run as often as I could during chemo in order to keep my energy and strength up.  I assumed the numbness was due to loss of muscle or possibly some other damage from the surgery and would heal with time.  When it didn't, I made an appointment with my surgeon after I was finished with chemo.  They had me run on a treadmill for 5 minutes and then tested the blood pressure in both ankles.  The blood pressure in my left leg was less than half of what it was in my right leg, so the next step was to do an ultrasound of the area where the stent is placed.  The ultrasound clearly showed that it was collapsed and obstructing the blood flow, so here we are.

My surgery is scheduled for Tuesday, August 19th.  It will be my third surgery and fourth hospitalization in the past 6 months, and hopefully the last of both for a very long time. The clock is ticking for me to get better before Baby Boy is due on 9/4, so I'm praying for a smooth operation and appreciate your prayers as well.  I continue to be optimistic about the future and I'm still very eager for things to get back to normal.  Until then, I'm working on being patient.



Sunday, August 3, 2014

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. 

Friday, July 18, 2014

Another Setback - Part 2

If you haven't read part 1, click here.

On Sunday morning, after a solid 2 and a half hours of sleep, I woke up to have my blood taken at 6:15am.  My nurse informed me that they were not able to get the Leukine I was waiting for and that they would have it when the lab opened at 9:00am.  My fever was down to around 99.1 and I felt ok despite not having slept much.  Around 8:00 I met my new nurse and had breakfast.  An hour later she told me she still didn't have the medication and I learned that my WBC was now 1.0, down from 1.5 just 10 hours earlier. I told her at this point that this needed to be escalated and considered urgent.  According to my oncologist I was supposed to have gotten it the night before in the ER and the fact that my counts were dropping so fast made me very nervous.  I believe that she did her best, but it was still another 2 hours before she finally came back with the shot of Leukine.  Apparently there was a computer problem with the pharmacy and she ended up having to override the system in order to get it for me.  Nonetheless, I was happy to finally get it and reverse the tide.  It is a shot that goes in your stomach and then stimulates white blood cell production in the bone marrow.  My faithful wife came to be by my side until after lunch and then left so I could try to take a nap.

Even Tiff had to wear a mask to see me.  No one wore it better though.

Around 1:30pm, after trying to fall asleep, I started feeling very hot, so I paged the nurse and told her I wasn't feeling well.  At that point my temperature was 101.7.   Shortly after that, I started getting chills and shaking uncontrollably.  Then back to burning up.  Around that time, my pastor had stopped by to visit and pray with me.  When he walked in, I said "this is really bad timing...well, since it's you, I guess it's good timing."  He didn't stay long, as I looked pretty bad, but he did pray for me, which I was going to need as the afternoon went on.  Soon after, my parents stopped by to visit and I filled them in on my condition as my fever had gone up to 102.5.  I told the nurse I thought I might be having a "first dose reaction" to the Leukine, and asked for some Benadryl, since that is what they give before chemo to prevent that type of thing.  She brought me some along with Tylenol to help with the fever.  I also asked to see a doctor to find out what was going on.

The next hour, around 3:00, my temperature had gone up to 103.7 and I was continuing the cycle of burning up and shaking chills.  I would take off all of the blankets for awhile when I was hot, and then cover up with 4 blankets while shaking.  My nose and fingers were cold to the touch while I had the chills, even though my fever was so high, it was weird.  We still had not seen the doctor, and I was getting upset about that.  We were told that he was coming, and that he ordered another antibiotic, but that was it.  At 4:00 my temperature was 104.8 and I was miserable.  At this point I lost it.  I couldn't talk much, so I gave my mother, who is a nurse, permission to escalate things with the nurses on my behalf.  We weren't getting any information and there did not seem to be any sense of urgency.  She left the room to talk with the nurse and her supervisor about why we hadn't seen a doctor and why nothing else was being done to reduce my fever or provide any information about what was happening.

When she came back without any new information, I lost all confidence in the hospital and demanded to be transferred to Mass General.  At that point, I felt like I was closer to slipping into a coma (which I think happens some point after 106) than to being at a normal temperature with no clue why or if it was going to stop.  I felt like whatever was happening was due to being a chemotherapy patient and I wanted to be in a facility that had an oncology floor, with oncology nurses and oncologists who could evaluate me in person.  The nurses were very nice and understanding, but I felt like things were out of control and I needed to be somewhere else.  They paged the doctor and were able to talk to him to initiate a transfer (although he still hadn't come to see me.)   I asked for damp washcloths to put on my head to cool me down and then an ice pack to do the same thing (I had to ask for these, which was a source of frustration.)  Shortly after we were told that Mass General had no available beds that day so I said I wanted to go to the Lahey Clinic in Burlington, MA.  I was suffering at this point and dark thoughts starting creeping in.  "Am I going to die?  Did I get some infection while my immune defenses were down and now I'm in a place that doesn't have the resources to save me?"  I prayed to God that this wasn't the case and remembered the scriptures that had been so comforting throughout this journey.  "Be still, and know that I am God."  "Fear not, for I am with you." "The Lord is a refuge for the oppressed."  "We are more than conquerors through Christ."  "The Lord is near to all who call on Him."  "I will not die, I will live to tell what the Lord has done."  All of these little snippets of bible verses came into my head.

A picture that Tiffany ordered for the baby's room that came this week. A reminder we both needed.

Around 5:00pm I started feeling like things were turning around and my temperature at that point had dropped to 103 point something.  A huge relief swept over us.  Tiffany was back by this point and over the next two hours my fever broke and my temperature went back down to 99.4.  I felt so much better.  Around 7:00pm I got a call from Dr. D'Silva.  When things were bad I had given his number to my mom and she had called and left him a message.  He had called the hospital to find out what was going on and then called me.  He talked me out of transferring as he confirmed the protocols they were using were the same thing I would get at Mass General or anywhere else.  He also explained that a spike in fever is expected after getting Leukine as my body is getting more white cells and going into fight mode.  Nevertheless, he said he would switch me to a different type of white cell stimulator called Neupogen going forward. This was good information that would have put me at ease about 5 hours earlier.  He gave me his home number and told me from now on to call him any time day or night if I need to.  A few minutes after he hung up, I got a call from Dr. Thatai, who reiterated everything Dr. D'Silva said.  While I was on the phone with her, the hospital doctor finally came in to see me.  By this point it was a different doctor than was initially paged as it was a new shift, but she also confirmed everything they were doing and what I should expect.  It was all great information and I told her how upset I was that I hadn't seen a doctor earlier as it would have relieved so much stress all afternoon.  I was able to eat some food and I tried to fall asleep around 9:00pm.  The chills and shakes started up again and my fever jumped up to 100.7, but it only lasted about an hour and I was able to fall asleep.  I woke up a few times over night for tests and to have my vital signs taken, but my temperature had dropped to 99 again and I was able to sleep for most of the night.

The next morning, Monday,  I woke up feeling better.  The day followed a similar pattern but much milder.  No fever until about 1:00pm, then fever around 99 to 101 until 5:00pm, then no fever, then small fever again from about 9-11pm. My white counts were up to 1.6, so the Lukein was working.  I got a shot of Neupogen at 11:00am.  I shared my frustrations about the lack of communication and sense of urgency with pretty much everyone I came into contact with starting Sunday night into Monday.  I called to speak to one of the nurses at Lahey to let them know I wouldn't be there for chemo.  I was able to ask some questions and shared my experience with her also.  Dr. Thatai also came to see me that morning, which added to my level of comfort.  All of the nurses at Parkland that day were very apologetic and attentive.  I don't blame my nurses from Sunday as I know they were doing what they could and were also frustrated, I just wished they would have been more communicative and had better avenues to access doctors on Sunday.  Monday evening I received an e-mail from the nurse navigator at Lahey, Katie, just to check in since she heard where I was and that I missed my last chemo that day.  I replied back that I was bummed out about missing my last chemo and shared very generally and respectfully that I was frustrated with the care I was receiving and was not a fan of Parkland. 

Tuesday morning Dr. D'Silva came to see me and my white counts were up to 2.9.  I also got a visit from the Director of Adult and Critical Care Services who was informed about my experience along with the hospital risk director from Katie.  We had a good conversation and I shared the whole timeline with her, along with my candid feedback about how things could have gone differently.  She was extremely apologetic, empathetic, and assured me she was going to "tear this apart" to make sure they made it right.  I really appreciated the follow up.  Later that afternoon, she returned with the hospital's Chief Nursing Officer who reiterated how apologetic they were and that they were going to be reviewing all of their protocols, training, procedures, etc, including the pharmacy issues, the communication, and the response/ availability of the doctors.  I tried to add in some of the positives that I encountered (including the care I observed of the guy with dementia) and added in my opinions about how they can improve the patient experience with things like the decor, the room layout, etc.  I ended the meeting by telling them that someone once shared with me early in my career that there are two characteristics necessary to be successful in business that I felt were just as relevant, if not more, in the healthcare field: empathy and a sense of urgency.  These two things were missing for me on Sunday.  They agreed and vowed to take action to improve and follow up with me (both of them already have once since I've been discharged.)  I appreciate that they are taking it seriously and I really hope my experience can help others avoid a similar situation in the future.  Tiffany brought the girls up to see me that night which was a spirit lifter.  They had fun playing hide and seek in the closet of my room and using the adjustable bed as a slide. 

Family picture taken the night before I went into the hospital


Wednesday I expected to be discharged and I waited until 1:00pm to see the hospital doctor to make it official (also shared with my new friends.)  But regardless I was so happy to be going home.  I was starting to feel the effects of nonstop high dose antibiotics for 3 and a half days which I did not like at all.  Aside from the bad taste it left in my mouth even though it came in through an IV, it was making me irritable and anxious.  I'm starting to feel back to normal today, although still very tired, so I'm taking it slow.  My last chemo treatment is now scheduled for Tuesday, 7/22, so I'll have time to be physically prepared.  Needless to say I am ready to put this chapter of life in the rearview mirror permanently!


Another Setback - Part 1

So close.  Last Saturday, July 12th, I was less than two days away from getting my last chemotherapy treatment when things suddenly went off the rails.  Before that point, I had already mentally moved onto life after chemo and made plans for everything I was going to do after this 6th and final cycle was complete.  I had sent my return to work date in to HR and planned my schedule for when I would be back in the office.  Tiffany and I had a trip scheduled the following week to fly down to South Carolina for a few days at the beach.  This was going to be a combination trip to celebrate our 10 year anniversary which fell in June, celebrate the end of chemo, and also one last getaway together before baby boy is due in September.  If there is one thing I've learned this year it's that life will interrupt your plans and you just have to adapt.  Am I disappointed?  Absolutely.  But I can't waste any time asking "why me?" when I instead I need to focus on "what now?"  So my return to work is going to be pushed out a little further, and we're looking to do a scaled down trip somewhere closer to home before the baby is born.  Improvise, adapt, overcome.  This is an unofficial slogan of the US Marine Corps and a great strategy for dealing with adversity in life.  There will always be things that knock us off track from achieving our goals.  These may change the path we had planned to get there, but the key is to stay focused on the goal and not get caught up in the temporary disappointments.  The only way to fail is to quit.

So here's what happened.  I went to sleep last Friday night not feeling great and woke up on Saturday feeling the same.  I was determined to check a few things off my to-do list that weekend in preparation for chemo on Monday, so I had some coffee and went to Home Depot.  I didn't get much accomplished as I started feeling more fatigued in the afternoon and tried to take a nap.  After 3 unsuccessful hours, I got out of bed feeling hot and took my temperature.  100.6.  Uh oh.  I knew I was supposed to call my oncologist if I had a fever above 100.4, so I was concerned, but hoping I wouldn't have to since it was a Saturday evening.  I tried another thermometer and it came back 100.4.  I decided to drink some water and wait 30 minutes and then take it again before doing anything just to be sure.  100.3 and then 100.4.  It was right on the edge but Tiffany gently encouraged (forced) me to page the oncologist on call.  Dr. D'Silva was not on call, but I got a call back from one of the other oncologists at the practice, Dr. Thatai.  She said that I needed to go to the emergency room to have my blood counts checked and be checked for an infection.  My white blood count the week before was  lower than usual, so she wanted to be sure it was back up where it should be at the end of a cycle. Since Lahey is affiliated with Parkland Medical Center, she directed me to go there since she could call ahead at the ER with her instructions and monitor my status through the same computer system.  I prefer to go to the Elliot hospital since I live near it and my mom and sister both work there.  She said I can go to any hospital I want, but she would not have access or privileges there, so I would have to coordinate between them and her.  Although I had never been there before other than for tests, I decided to go to Parkland.  I figured the ER wait would be shorter on a Saturday evening than at the Elliot and I wanted my oncologists to have full access and be in charge of my care.

I drove myself to Parkland, naively expecting to get checked out and leave with some antibiotics as a precaution.  There was no wait in the ER and I was taken right in.  The ER was bright, clean, and modern.  I was seen quickly by a nurse who accessed my port to start IV fluids and take my blood. I also had a chest x-ray taken.  I spoke with a physicians assistant and he had been in contact with Dr. Thatai.  I felt like I made the right decision and even told Tiffany she didn't need to come meet me as I would be home soon.  She came anyway because she's a good wife.  A few minutes after she arrived, the PA came back in with the news that I was being admitted.  My white blood count was 1.5 (normal is between 4.5 and 11) which means it had dropped from the week before when it should have been closer to 4 at this point in the chemo cycle.  That indicated that they were being used up fighting something and losing, so Dr. Thatai wanted me admitted to receive medication to stimulate white blood cell growth (called Leukine) along with IV antibiotics.  When I had my blood checked the week before for my regularly scheduled labs, my WBC was 2.2.  I could have had Leukine that day, but Dr. D'Silva recommended against it in order to "avoid altering the microenvironment" of my bone marrow this late in the game.  He expected the counts to rise on their own as they had every time up to this point.  Because of this, I questioned the PA in the emergency room about the Leukine and said I would feel more comfortable if Dr. Thatai could confirm with Dr. D'Silva before I agreed to take it.  He reluctantly agreed to call her back with my request and came back a few minutes later.  He said she was not able to call Dr. D'Silva (it was about 10:00pm on a Saturday night) but that she reiterated how important it was now since my counts had actually dropped since the week before.  I could have called Dr. D'Silva myself at that point since he had given me his cell phone number when I was first diagnosed, but I decided not to and I agreed.  At this point we just waited for the shot of Leukine and to be sent up to a room. 

View from my room


About an hour later the paperwork was done and the nurse came in to take me up to my room.  She said they were unable to get the Leukine shot in the ER, but that I would get it when I got to my room.  Once we got to the floor, we stopped at the nurses station where I overheard the ER nurse and the floor nurse mention that neither one of them had ever administered Leukine before.  I shot Tiffany a concerned look that said "oh, great..." After that I transitioned to my room where I would be on reverse isolation, which means everyone who entered the room had to wear a mask and take extra precautions since my immune system was so compromised.  My nurse was friendly and helpful.  She told me there was a problem getting the Leukine and that she had notified the supervisor and they were working on it.  Tiffany left around 11:30 and I asked for something to eat since I hadn't eaten dinner and was starving.  I fell asleep around 1:00am only to be woken up about 30 minutes later by an alarm going off and different voices arguing back and forth outside my room.  The elderly patient across the hall from me was confused and didn't know where he was.  The nurses calmed him down and reassured him he was in the hospital and got him back in bed after 5-10 minutes.  This same cycle continued every 15-30 minutes for the next 3 hours, at some points getting more escalated with him saying he was going to call the police and swearing.  As irritated as I was, I was glad to see how the nurses treated him with compassion and respect each time.  I felt bad for him and thought about how that is how I would have wanted my father or grandfather treated in the same situation.  Around 4:00am, I asked for some earplugs, which thankfully they had and I was able to fall asleep.

They came in around 6:15am to take more blood and I was up for what was going to be a VERY long day.

To be continued as I finish part 2...

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.”



Thursday, May 29, 2014

Halftime

As my last post described, my cancer has gone into remission after only 3 rounds of chemo.  While I still have 3 more rounds left to get through, it's a huge relief knowing that this chapter has an actual finish line.  Before knowing that the treatment was effective, there was always the question in my mind that it may not get all of it and I would have to move to a second line treatment and drag this out further.  I was also aware that early response to chemo for my specific type of lymphoma is a major predictor of long term survival (fellow nerds can view the study here.)  Another benefit of the fast response is that I no longer need to take the Allopurinol, so one less pill to take every day. 

Everything going forward seems somewhat anticlimactic, but I guess it's not.  I think about being at the halfway point like it's halftime in a game.  At halftime, you regroup, evaluate your performance and adjust your strategy if needed.  Well, no adjustment is needed here, just perseverance.  Like the quote by Winston Churchill (and the country song by Rodney Adkins): "If you're going through hell, keep going."  It's kind of ironic that the lymphoma never bothered me (until the tumor got big enough to put pressure on my lungs and impact my breathing.)  Last year I was in the best shape of my life and did some really fun things, all while "having cancer."  The hard part has obviously been the chemo as well as the recovery from the biopsy debacle.

Another recent event I haven't mentioned was my dad and our friend Anthony shaving their heads on stage at church in support of me.  They did it to promote an event they're planning where people can shave their heads to raise money for us and the Leukemia and Lymphoma Society (cleverly named Operation Bald Eagle.)  I had no idea about it, so I was in shock at both the head shaving and that they were planning the event.  It's very hard for me to be in this position, but at the same time I'm humbled and grateful to have such an amazing support system.   

My dad and I after he shaved his head
 This past weekend was Memorial Day, as well as the date of the marathon I was supposed to run (the Vermont City Marathon in Burlington, VT.)  I was starting week 4 of my 16 week training plan when I found out my diagnosis.  I wasn't sad or angry.  Although I'm much farther from that goal than I was a few months ago, it's still something I know I'll accomplish.  For now, I'm excited that I've been able to start running (using the term loosely here) again.  I'm only able to make it 1.5 miles before my left leg feels like it's going to fall off, but it feels great to be able to do anything.  My left leg was the one damaged in the surgery, so it's going to take awhile to rehab it and I'm not sure it will ever be the same as it was.


My marathon training plan.  The gray was as far as I got before the diagnosis.

Today while I was hobbling along at my 11:00 per mile pace, I thought about Terry Fox.  He lost a leg to cancer in 1977 and then in 1980 he ran 3,339 miles across Canada in 143 days to raise money and awareness for cancer research.  His run was cut short when his cancer came back and he passed away in 1981.  I learned about him a couple years ago from an ESPN 30 for 30 documentary.  His story inspired me then and does even more today.  This weekend I'm going to run/ walk a 5K, (have I used enough hyperlinks in this post?) so we'll see how that goes.




Friday, May 23, 2014

Good News

I had planned on writing about reaching the halfway point of chemotherapy today and including the results of yesterday's CT scan in the same post, but I'm not going to be able to do that today.  A lot has happened over the past couple weeks and I'll share that separately, but today is all about the scan results.  I met with my oncologist today and I am in complete remission.  That is not a typo - complete remission.  Praise the Lord, hallelujah, jump for joy complete remission.  I will still have to complete the last 3 rounds of chemo, but who cares now, right?!  It will be much easier to tolerate knowing there is a true end in sight.

"Because......we're happyyyy....."


As strong as my faith is and as much as I've been expecting a positive outcome, I have to admit I was shocked to hear the news.  I was expecting to hear that things were progressing well, but mentally I hadn't thought that it could be gone this early.  Maybe it was a defense mechanism.  I had prepared myself for bad news and that it wouldn't shake my faith or optimism, although I didn't really think the news would be bad.

Good report

 I had just had my blood taken and was going through some questions with the nurse when Dr. D'Silva came over.  He just came right out and said "we have the results of your CT scan and you are in complete remission."  My jaw dropped and I think I said "what?!"  I just looked at him, then at Tiffany, and at our nurse navigator Katie, who had come over to give me a copy of the report as a huge smile came on my face.  There were a lot of hugs and high fives as the other nurses came over to congratulate us.  I heard the word "miracle" and someone else asked if this was some sort of record, after only 3 cycles of chemo.  My cancer responded well to the treatment and I have taken good care of myself physically in addition to being young and otherwise healthy.  But I have also been covered in prayer from day 1 by so many people to a caring, merciful God.  For all of that I am overflowing with gratitude today. 





Tuesday, May 13, 2014

Why I Have Faith

I'm starting this post while hooked up to the IV getting my third dose of chemo.  I say "starting" because there's a good chance that I'll lose focus or dose off but I wanted to write while I had something fresh on my mind. A few people have remarked over the past couple of months about how strong my faith is.  This means a lot to me because my faith is foundational to who I am and it's reassuring that this is what comes out during a difficult set of circumstances. I attribute the strength and peace that I have to the many prayers that are being prayed on my behalf.  But my personal faith, this confident assurance that I have in my innermost being, is something that has been built up slowly over the years.  Its not just hope (although I do hope I get better.)  It's more than my positive attitude; it's actually the source of it.  And it's not a blind faith.  Years ago I learned that it was possible to have a relationship with God and I decided that I wanted that in my life. I prayed simple prayers where I just talked to God, something like "I don't know how this is going to work since I don't think you speak audibly to people anymore, but I'd like to know you." After that I started seeing God revealing Himself to me subtly, through people coming into my life, through circumstances, and passages in the Bible seemingly speaking directly to what I was dealing with in life. There were opportunities for me to take hold of.  I saw small prayers being answered and God directing my steps.  As I trusted Him to lead me, my faith grew.  

Round 3!

A few weeks ago I was browsing through radio stations in the car and stopped on a station where a guy named James McDonald was speaking. At that moment he said "God did not promise a life without storms. He promised that if we build our house on the foundation of obedience to Jesus that our house will not fall when the storms come."  So that's where I am during this trial.  I chose a relationship with God and to try to follow the principles in the Bible as a guide for the decisions I make in life.  I have seen God direct my path up to this point and give me the ability to be a better husband and father than I ever could have been on my own. For those reasons I know that He is not done with me yet and there is a continued purpose for my life.

Two of the purposes I have in life
I was talking with a friend recently who had lost someone very close to him. He wasn't mad at God but he was searching for something deeper. My only advice was to just ask Him. We too often think that we have to clean up our lives before approaching God, when He takes care of the cleaning after we acknowledge our need for Him and begin seeking Him. It's a life long process that no one will ever get perfectly right, but we have the opportunity to get closer than we were before. To build that relationship, that unshakeable foundation so that when the storms do come (and they will), we have that Source of strength and peace right at our side. 

One of my favorite examples of faith is in Daniel 3:13-18.  "Furious with rage, Nebuchadnezzar summoned Shadrach, Meshach and Abednego. So these men were brought before the king, and Nebuchadnezzar said to them, “Is it true, Shadrach, Meshach and Abednego, that you do not serve my gods or worship the image of gold I have set up? Now when you hear the sound of the horn, flute, zither, lyre, harp, pipe and all kinds of music, if you are ready to fall down and worship the image I made, very good. But if you do not worship it, you will be thrown immediately into a blazing furnace. Then what god will be able to rescue you from my hand?” Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.”

That's how I'm approaching this from the spiritual perspective; the God I serve is able to deliver me from this, and He will.  But even if He does not, it doesn't change my faith and devotion.  Note: the Bible also says in James 2:17 that faith without works is dead, and I certainly believe that God also works through modern medicine among other means, hence the chemotherapy, nutrition, acupuncture, yoga, etc. that I'm also doing.  

As I enter a difficult week, I'm going to post a few verses that continually encourage me below the song,  These may encourage you, too.  This song is also very uplifting and a good fit for this week.   




Psalm 16:8 - "I have set The Lord always before me. Because he is at my right hand, I will not be shaken."

Psalm 9:9-10 -  "The Lord is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name will trust in you, for you, Lord, have never forsaken those who seek you."

Psalm 27:13, 14 - "I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."

Romans 8:28 - "And we know that in all things God works for the good of those who love him, who have been called according to his purpose"

Psalms 118:17  - "I will not die; instead, I will live to tell what the lord has done. "

Psalm 119:50 - "My comfort in my suffering is this: Your promise preserves my life."

Psalm 145:18,19 - "The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them."

James 5:11 - "As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy."

Friday, May 9, 2014

Pockets of Normalcy

Time these days is measured based on which week of which cycle I'm in.  Right now I'm close to the end of week 3 of cycle 2 so I'll be going back in for chemo again on Tuesday.  This week has been really good overall and has been the closest thing to a normal week in over two months.  I started Monday off with acupuncture and also received a vitamin b12 shot during that visit.  I had started to experience some minor numbness in my fingertips, which is an expected side effect of chemo, so the b12 shot was offered to treat that along with the lack of energy I had been feeling.  Whether it was the shot or just a coincidence, I felt awesome after getting it and have felt great mentally and physically all week.  After the appointment, I stopped at work for a quick visit with my coworkers which also gave me a boost. 

On Tuesday I started working again which has helped bring back a sense of normalcy.  It's only part time, but it makes the days go by faster.  My boss has been good about making sure I know that I'm needed while not putting any pressure on me to do too much before I'm ready.  Having that flexibility and support has been huge and something I don't take for granted.  It's one less burden I have to bear while I focus on getting better.  Wednesday night I was able to attend the monthly board meeting of PMI-NH and see my friends there for the first time since this ordeal began which was nice.  And then Thursday night I made it to our weekly small group/ Bible study.  All of this without needing any naps!  I'm feeling pretty accomplished this week.

Related to nothing in this post, but I've gotten really good at making non-alcoholic concoctions

I've still been walking every day to stay in some semblance of shape.  This week I was really tempted to start jogging  because I felt so good but my better judgment kicked in and I held off.  I look forward to running again but I still have another 3 weeks for my surgery to heal.  The last thing I need is to rupture something so I'm being cautious with it. 

Things at home are settling into somewhat of a routine.  Now that it's finally warming up here Tiffany and the girls can spend more time outside or going places, so my takeover of our sunroom doesn't cramp their space as much.  Genevieve is also adjusting better lately.  Being a four year old, she knows something is different and that her daddy has been sick, but isn't able to understand or process it.  She has gravitated more to Tiffany and was more hesitant around me at first, so we could tell she was dealing with it.  For example, one morning when she woke up, she came into our room to lie down next to Tiffany as she is usually the first one up.  I had already gotten up, but I came back in and laid down next to her.  She slowly and casually crawled away from me to the other side of Tiffany while eyeing me suspiciously.  We actually laughed about it, as I knew it was part of the adjustment process.  For my part, I've tried to act as normal as possible around the girls and reassure them that I'll be better soon.  Last Friday I took Genevieve out to lunch and a movie for some bonding time and since then she has been back to her usual self with me.  Nadia has been blissfully ignorant of anything and has just been happy to have me around more.  I love my girls.

My lunch date

From last summer

Love this picture

 I also have the date for my next CT scan to check the progress at the halfway point of chemo - 5/22.  That's all for now.


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.