Reflecting Back & Looking Forward

A year ago today I was lying on my couch, sick with pneumonia for the second time in a five month period.  Although I didn't know it at the time, it would be a sign of things to come for the year.  Last year was supposed to be a great one filled with joyful milestones.  We were going to have another baby.  I was going to run a marathon.  I was contemplating a job change and a move.  Life was good and moving in the right direction.  Of course, two months later I was diagnosed with cancer and everything screeched to a halt.  We were forced to re-prioritize, so we did.  More than anything, the past year tested our resilience.  It was hard.  It was scary.  I almost died.  I was essentially useless for 5 months while recovering from surgery and dealing with chemotherapy at a time when my family needed me.  Tiffany had to take care of me, along with basically all of the household duties and two very active toddlers.  While pregnant.  There were many tough days, but she carried the burden with grace and determination.  (Her thoughts on her blog here.)  God showed up daily- internally by providing strength, peace, and even joy above what we would ever have been able to muster on our own, and physically through the MANY people who came through to support us.  My mother in law was an angel who cooked, cleaned, and helped with the kids.  My parents cancelled their vacation, took time off of work, and were there with us every step of the way.  SO many friends took time out of their busy lives to bring us meals and encouragement.  We were surrounded with love and support throughout the ordeal and I don't know how we would have made it through otherwise.  But we made it.  We adapted, we improvised, we overcame.  Chemo ended and we transitioned right into having a (mildly challenging) newborn in the house.  But right on schedule he is now doing much better and sleeping more, just in time for the new year.  A better year.  Our marriage is stronger because we stood together during the storm.  Ten years ago we vowed to stick together for better or worse, in sickness and health.  We've experienced the "worse" and the "sickness" now and that gives us a new ability to savor the better times.  We look forward to 2015 with just as much hope and optimism as ever, but now with more gratitude, and the knowledge that we can endure whatever life throws at us.

I can face anything with this one by my side

Our Dax - also ready for 2015

So as I move on and plan for the new year, I want to acknowledge a few of the lessons I learned this year:

• Attitude is important.  Tragedy, heartbreak, and disappointment are inevitable in life.  How we respond to adversity and disappointment determines how successful we will be.  Things happen that we can't control, but we can control how we react.  We can accept defeat and ask "why me?" or we can resolve to use those experiences as motivation to become better, to rise above, and keep fighting.  I choose to always stay optimistic.

• Perspective is important.  No matter how bad things seem, it can always be worse and it will get better.  There is always something to be thankful for.  I drew inspiration from a six year old I've never met who is courageously battling brain cancer.  He's the son of a friend from high school and their story is here.

• Community is important.  The outpouring of support and tangible help we received has made me a more compassionate person. 

• Knowledge is important.  I was going to say "knowledge is power" but then it wouldn't fit with the rest of how this list turned out.  Specifically with medical issues, I've learned how important it is to be informed.  Doctors aren't perfect.  Be your own advocate.  Ask questions.  I had time on my hands and did research using resources like the Leukemia and Lymphoma Society, American Cancer Society, National Institute of Health, The Journal of Clinical Oncology, and the National Comprehensive Cancer Network to name a few.  But there is also a lot of misinformation out there.  I had planned to dedicate a separate blog post to that topic, but suffice it to say that I don't believe that there is a giant conspiracy to give people cancer and prevent a cure by the government/ pharmaceutical industry/ wall street/ illuminati/ aliens, etc.  I believe in integrative approaches and that clean eating, exercise, prayer/ meditation, natural/ herbal medicine can be beneficial as a compliment to modern medicine, and I added some of those approaches into my own treatment.  But false information that oversimplifies cancer and blames the victim is misleading and irresponsible.  I could go on and on and I don't want to offend or get into any debates, but my two favorite sites that confront the most common myths are here and here.  Worth a glance.

• Faith is important. My Christian faith has been a recurring theme in this blog throughout the whole experience and this has only strengthened it.  I have never believed that if I just do the right things, then God will prosper me and make my life comfortable.  On the contrary, he promised that we will have troubles in life, but that he's there for us when they come.  Looking back, I can see clearly how God prepared me to go through this, how he carried us through it, and I know he's going to use it for good. 

So here's to a healthy, blessed, happy 2015.  The best is yet to come.

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!

 

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. 

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. 

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.

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. 

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!