Second Opinion

Thursday was the big day where we had our appointment at Mass General with Dr. Abramson for a second opinion on the diagnosis and treatment plan.  We have no lack of confidence in Dr. D'Silva and the team from the Lahey Clinic, but second (and sometimes third or more) opinions are important to get when you're dealing with cancer, especially types that offer a number of different treatment options.  Dr. D'Silva himself actually arranged for this visit which says a lot about him.  Dr. Abramson is the director of the Lymphoma Center as well as a professor at Harvard Medical School, so I was anxious to get his assessment.  My entourage for this appointment consisted of Tiffany, my parents, and my older brother John.  It was a cozy ride down to Boston but we made good time and found our way to the Lymphoma Center and checked in.  I learned that we would be seeing Dr. Abramson's fellow, Dr. Oser first, which was fine with me; the more lymphoma specialists the merrier.

We were called in exactly on time and piled into one of the treatment rooms.  After the nurse took my vital signs and asked the standard questions, she gave me a paper that listed my care team from Mass General. This listed all of the doctors and nurses I would have access to.  It made me feel good to have another whole team of experts that would be available to me.  Soon after, Dr. Oser came in and introduced himself to everyone.  He had reviewed my case and spent most of the time talking about the most recent pathology report from Mass General.  The biopsy was reviewed by the pathologists there after I received my initial diagnosis and there were some differences.  While the initial results indicated follicular lymphoma with an aggressive type similar to diffuse large B cell lymphoma, the latest pathology showed it to be straight follicular lymphoma, which is a slow growing type.  Apparently I am right in the middle as far as slow growing vs aggressive, but it's amazing to think that I've had this for years.  After about 30 minutes or so, Dr. Oser left with my discs to go review the CT and PET scan results with Dr. Abramson.

Another 30 minutes later, they both returned and Dr. Abramson introduced himself to everyone.  He started from the beginning, educating or reeducating us on what exactly lymphoma is at the cellular level, all of the different types, and then my specific type.  He explained that for slow growing or indolent lymphomas, if it is "behaving itself" or not causing any symptoms, they prefer to leave it alone until treatment is necessary because earlier treatment doesn't have any impact on overall lifespan.  In my case, even though I don't have any outward symptoms, the fact that there is so much of it encroaching on my organs means I need treatment.  He reiterated that this type was not categorized as curable, but treatable, meaning it usually returns at some point down the road (although personally I don't have to accept that right now.)  However, there have been significant advancements in lymphoma treatments very recently with even more expected in the near future.  "There's a lot of work happening for Joe," he said.

Next we talked about treatment options.  This was the part where we learned some new information.  He talked about my current planned chemotherapy regimen, R-CHOP, as well as another that has seen recent success, R-CVP, and a newer regimen called R-Bendamustine that was only FDA approved in 2008.  He also told us that I qualify for a current clinical trial for a drug called Lenalidomide, which has seen some early success in treating lymphoma.  It's a non-chemo drug, so it would be less toxic, however there is no long term data on it and if I even if joined the trial, there would only be a 50% chance that I would get it (the other half are given R-CHOP) and I'd have to drive into Boston for the treatment vs. getting it in Derry.  Given all of the options available, his recommendation was that I go with the existing plan of the R-CHOP since it's a proven treatment with over 40 years of data behind it.  I'm young enough to tolerate it and according to him, if it comes back there is a better likelihood for advanced treatments in the future that would come with less unknown risk.  He also strongly recommended "maintenance therapy" of getting just the Rituximab every 2 months for 2 years after the R-CHOP ends, which has shown to extend remission time.  Rituximab won't cause any of the chemo side effects as it is just an antibody that targets cancer cells to help our immune system kill them naturally.  We all agreed with his conclusions.

We spent the next few minutes asking some other questions, including "the" question of what could have caused this.  He confirmed what we had already been told, that it's a random genetic mutation and nothing I did caused it.  He also told us that it's not hereditary, so I couldn't blame my parents or pass it on to my children.  At that point he had spent around an hour with us and we were satisfied that we had all of the information we needed.  He gave us his card and said to contact him any time if we have questions or want to come back for another appointment.  We left feeling even more informed than we already were and more at peace with the current plan.  We were also very impressed with Dr. Abramson and grateful to have access to him in the future.  So now we're down to three more days until chemo starts and I'm ready to get on with it.

Phil 4:6,7 – “Do not be anxious about anything, but in every situation, by prayer and petition, with Thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Relevant verse from this song: "..couldn't believe, it could happen to me, I guess we're all one phone call from our knees..."

Chemo Class

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

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

The binder

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

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

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


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

Support

Supported.  Encouraged.  Blessed.  Surrounded.  Overwhelmed.  Loved.  These are all words I've used to describe the outpouring of support we've received since learning about my diagnosis.  Even while we were still in shock and disbelief, family and friends began mobilizing with acts of service and kindness.  Every prayer, every card, every online message, even every Facebook "like" gives us strength and peace to get through this.  But life goes on while we deal with this, including the annoying parts, and that is where our community has been so incredible.

Tiffany has been amazing, of course.  Despite not feeling 100% because of the pregnancy, she has put my needs above her own and taken on all of the work with the house and kids when I've been unable to help. And then there's my mother in law.  The timing of her moving to NH couldn't have come at a more critical time.  She is always a great help, but she has literally been a Godsend.  She is here almost every day cleaning, cooking, helping with the girls and watching them when we have to go to appointments.  I worry less about Tiffany during this time knowing that she has her mom here.   You can read Tiffany's response to the outpouring of support on her blog here.

No, they're not sisters.  :)

I'm fortunate to have most of my family close by.  From the very first CT scan when we learned something may be wrong, my parents have been at our side, even cancelling their vacation to be with us for appointments and in the hospital.  "Mama Pit bull" and my sister "Mini Pit bull" have been strong advocates to make sure I am getting the best care.  My dad welcomed me to "the club that no one ever wants to be a part of" and has a unique understanding of what's going on in my mind.   When we discovered that we had a mold problem in our house when I was in the hospital (because, of course), he, my brother and my brother in law were here ripping out the ceiling in my bathroom and putting a new one in.  We've also received so much love and encouragement from family afar (Connecticut, Maryland, Virginia, North Carolina, South Carolina, Florida, Georgia, Texas, Missouri, Kansas, did I miss any family?)

The Family

Words can't express how grateful we are for our church family.  Shiloh Community Church. If you live near me and you don't have a church, you should go there.  That's all I'll say about that.  The first night when we got the bad news from the enhanced CT scan, our pastor was at our house to pray with us and offer encouragement.  When I was in the hospital after the biopsy, a group of people descended on our house and spent an entire day deep cleaning it.  When our refrigerator broke down when I was in the hospital (because again, of course), they were there to help.  Shoveling my driveway when it snowed.  Signing up to bring meals to us. Making arrangements to have the mold issue professionally treated.  Sending me books.  Sending me encouraging words and scriptures (including an engraved dog tag necklace to constantly remind me of my faith.)  And not least of all, continuously praying, which has given me a different level of strength and peace that I would not have on my own.

Thank you Jack and Judy Hartman

When a friend is dealing with a significant issue, it can be hard to know what to do or say.  Our friends have also been amazing during this time to say the least.  They've visited me and provided so much encouragement over the past few weeks despite their own busy lives.  One of Tiffany's friends who lives far from us had ice cream delivered to our door one night (I didn't even know you could do that, which is probably a good thing.)  Even friends who I haven't seen since high school and even elementary school have reached out to offer support, which is just awesome.  I have tried to live my life and treat people a certain way, and although I've made mistakes along the way, it means so much to see that so many people care.  This experience has humbled me and will make me a more selfless and compassionate person.

I can't forget my coworkers.  I guess it's really true that "Fidelity Cares" (inside joke.)  My team bought me a nice leather bag filled with comfort items that will help during the chemotherapy and not to mention has graciously picked up my work without blinking an eye.  Coworkers that I didn't think even liked me have reached out with encouragement.  :)  One coworker and friend even created the below picture.  I am truly moved at that gesture and by all of the people who have made it their profile picture on Facebook.  You guys make me want to fight even harder.

So while a simple "thank you" will never be enough, know how much we appreciate everything.  And even though we still have a tough road ahead, we've already been changed for the better.

Matthew 25:34-40 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in,  I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’  “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink?  When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’  “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

I like the message of this song about how we don't have to carry our burdens alone.

Port Surgery

Wednesday I was back at the Elliot for another surgery with Dr. Hoepp, this time to implant a port in my chest.  A port, or venous access device, is implanted just under the skin and has a catheter that runs over my collar bone and into my heart through the superior vena cava. This is how the chemotherapy will be delivered, as well as anything else going in or out that would otherwise need an IV.  It will save me from having to get an IV every time, which will be nice since I've had 8 different ones in the past 3 weeks.  My arms are probably looking a little suspect to the outside observer...

Erin and I right before surgery

This time everything went as planned and the actual procedure took less than 30 minutes.  I woke up feeling great and once they took an x-ray to make sure everything was in the right place, we were cleared to go home.  I have an incision on my chest where the port was placed and one on my neck that was used to feed the catheter line.  I declined a prescription for pain pills because I felt ok and figured I could manage with Tylenol.  Big mistake.  By 8:00 that night I was in agony, so I took one of the pain pills I had left over from the biopsy surgery and called the doctors office first thing this morning to get another prescription.  Sweet relief.

Since then I've been spending time researching my diagnosis, non-Hodgkin's follicular and diffuse large B cell lymphoma, as well as my treatment plan to try to be as prepared as possible.  www.lls.org has a lot of information as well as discussion boards where I've been reading about the experiences of others who have gone down the path I'm about to start.  I connected with the local chapter of the Leukemia and Lymphoma Society in Boston and they're linking me up with someone close to my age who has survived this exact type of cancer.  As someone who is a "doer" I don't want to just sit back and wait, I want to learn about everything I possibly can.  Next on the calendar is a few more appointments next week and then one last weekend to rest and recover before chemotherapy begins. 

For now, I'm continuing to heal and feeling better every day.  I even went for a walk for the first time yesterday (baby steps, literally.)  My doctor said he wants me to exercise during the chemotherapy treatment as much as possible, which made me happy that I'll still be able to run.  10 more days until the battle begins.

Diagnosis Day

I want to start off this post by saying how amazed I am at the response to this blog.  The fact that so many of you care and are finding encouragement through this really means a lot to me.  I'm working on a whole post dedicated just to the support we've received so far, so I'll spend more time writing about it there, but just the fact that so many of you are following this makes me know that we're not going through this alone by any means. 

So today I had my appointment at Lahey with my oncologist, Dr. D'Silva to discuss the results of the biopsy and the recommended treatment plan.  My parents came over to pick me up and Tiffany would meet us there after she dropped Genevieve off at ballet class this morning.  My sister Erin graciously offered to pick Genevieve up from class and take her to her house for a few hours after.  We met up in the waiting room and soon after we were called in.  No blood work today, just a visit with the doctor, so the four of us crowded in the small exam room and waited for him to join us. 

Dr. D'Silva came in and asked how I was recovering from the biopsy disaster.  I told him I was doing well and showed him the incision on my stomach.  Then he got right to the point.  "You have non-Hodgkin's follicular grade 3B lymphoma.  Because the tumor is larger than 10cm, it is treated exactly the same as diffused large B cell lymphoma.  It is curable, but in your case since you are so young, we consider it 'treatable' as there is such a long period after where it will probably come back."  Curable.  Treatable.  These were good words that I wanted to hear.  "Curable" refers to the high 5 year survival rate, so obviously since I have a long time after that to live, the odds of it coming back sometime down the road are greater, but I'm not worried about that right now.

The treatment is chemotherapy with a regimen called R-CHOP which stands for the names of the 5 drugs in it.  The treatment lasts for about 5 months; 6 cycles of 3 weeks each and may be followed by radio immunotherapy, which consists of radioactive injections to further kill off the cancer cells.  I have an appointment next week with the director of the lymphoma center at Massachusetts General Hospital, Dr. Jeremy Abramson, to provide a second opinion on the diagnosis and treatment plan and then my first treatment will be on April 1st.  I'm also scheduled to have surgery tomorrow to have a port implanted in my chest, which will allow access for the chemotherapy for the duration of treatment.  We'll also be back at Lahey next week for a teaching session.  This is where a nurse will go through all of the details of the chemotherapy with us to help us adjust to what life will be like for the next 6 months.

I know that the road is not going to be easy, but I'm filled with hope.  Even though this is what we expected to hear, the news hit Tiffany hard.  She doesn't want to watch me suffer and I'm sure it's a helpless feeling.  The side effects are supposedly nausea, vomiting and fatigue, and although there are drugs that can help, there is no way to totally avoid them.  It's still a trade I will gladly make to get rid of the cancer.  I read this verse this morning that encouraged me in 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."  The land of the living.  Yes.  

After the appointment Tiffany and I stopped at a nearby Applebee's for lunch.  It's rare that we can do that with just the two of us, so we took advantage since her mom had Nadia and Genevieve was with my sister.  Once we sat down I looked up and noticed who was plastered on the wall in front of me: non-Hodgkin's lymphoma survivor Jon Lester, so I took that as another good sign.  

Non-Hodgkin's lymphoma survivor Jon Lester

This song has been on my heart lately.  I may not like the road I have to take, but I know who is by my side.

Setback

I came home from the hospital late in the afternoon on Tuesday, March 11th.  It felt great to be home.   I had a nice setup in our sunroom with a new memory foam mattress for our pull out couch courtesy of my parents and a refrigerator full of my new favorite drink, Boost.  Wednesday morning I woke up feeling good, so I made myself some breakfast and chatted with Tiffany and the girls while they were getting ready to go to the Wednesday morning women's bible study at our church.  Since I was still a little shaky when I left the hospital, I was scheduled to have a visiting nurse and physical therapy for a few sessions and the nurse was scheduled to come this morning.  I had planned to have my friend Dave come over after the nurse left as he was going to help me with a few errands I needed to get accomplished.

The nurse came and toward the end of her visit I started to feel like I was hitting the wall.  After she left I laid down flat and closed my eyes as I was starting to feel nauseous.  I texted Dave to tell him not to come over because I wasn't feeling well, but he showed up right after I sent the text.  I couldn't even open my eyes when he came in, so he dropped off a few things he brought over and left.  I woke up about 3 hours later and felt a little better, so I had something to drink along with some more pain medicine and took it easy the rest of the day.

I went to bed around 11:00 and read because I couldn't sleep.  I was laying down, trying to take long, slow, deep breaths and praying in my head when I noticed that my heart was absolutely pounding.  The more I tried to get it to slow down, the faster it seemed to go.  I knew this wasn't right, especially since I was lying down so I decided to take my pulse.  It was over 100.  My resting heart rate is usually in the 60s, so this really freaked me out.  I debated for a few minutes before picking up the phone and calling my mom to get her perspective as a nurse.  It was after midnight but she picked up the phone right away.  "I woke up about 5 minutes ago and felt like I should pray for you," she said.  I told her what was going on and she said that I could just be dehydrated so I should drink some Gatorade and try to go back to sleep.  I said ok, and I drank about 32 ounces of Gatorade which seemed to help, so I laid back down and fell asleep.

I woke up around an hour later, sweating and with a pulse of over 100 again.  I rolled over gingerly and stood up to walk to the kitchen and take more pain medicine.  As I did, my legs and arms felt numb and I started getting really worried.  It was 3:32 am.  I called my mom back, who again had already woken up about 2 minutes before my call and was in the middle of praying for me.  "I'm sorry to ask this, but can you come check me out?  I think I might need to go to the emergency room and if this were the middle of the day I wouldn't think twice."  She said they would be over in 20 minutes, so I got up, got dressed and paced nervously until they arrived.

After my mom listened to my heart we all agreed that I needed to go to the emergency room.  I was feeling more weak and nauseous again so there were any number of things that could be going on.  Tiffany, being 3 months pregnant, was nauseous and exhausted from being up on and off all night, so she agreed to stay home to get some more sleep and stay home with the girls while my parents took me to the hospital. She could then come in the morning when her mom came over to be with the kids.

 We had no wait at the ER due to my condition and I was wheeled to a small room right away.  The ER nurse, Rhonda, was absolutely phenomenal, as was the doctor, Dr. Simpson.  They hooked me up to get IV fluids right away as well as medicine for the nausea and pain.  They made sure I was as comfortable as possible and went over the battery of tests they were going to do to figure out what was going on with me.  As they walked out and closed the door, I reached my breaking point.  I put my hand over my face and the tears started flowing.  All of the emotion of the past week, the pain, the lack of sleep, and the fear and despair from not knowing what was causing this latest episode came rushing in.  I told God that I didn't think I could take much more and I needed help.  My parents were still in the room and tried to encourage me.  "I know this sucks, but it will get better."  I felt like I hadn't even reached the hard part of this fight yet, so I wasn't sure even though I said "I know."  I composed myself and then closed my eyes to rest.

Shortly after someone came in to take some blood so they could run some tests.  I was then taken for an enhanced chest and abdomen CT scan to see if I had a blood clot, internal bleeding, a bowel obstruction, or anything else internally.  I was brought back to the small room in the ER to wait for the results.  My sister Erin stopped by on her way into work to check on me just as Dr. Simpson was coming in with the results.  All of the blood work looked normal except for my very low counts due to the blood loss from the surgery, and the scans were clean as well.  He said he wanted my surgeon to review it, but could not get through to him.  Dr. Hoepp had given us his cell phone number after my ordeal, so we tried that with no luck.  Erin was able to find out through some contacts that he was at the hospital in a board meeting, and got word to him about my situation.  He sent word back that he would be down right after the meeting ended at 9:00am which gave us all a sense of relief.

Shortly after 9:00, Dr. Hoepp and his Physician's Assistant, Holly, came through the door.  "Do I have to return the fruit basket now?" he said (my mother had sent his office an Edible Arrangement after he saved my life a few days before.)  He said he reviewed all of the tests and that he was ordering a blood transfusion.  He said my body was not regenerating the blood at the rate he expected due to the lymphoma, so that is what was causing my symptoms.  He would make the arrangements and I would be admitted soon.  A wave of relief rushed over the room and hope instantly filled me again.

I ordered some food from the cafeteria and a couple hours later I was brought up to my room back on the Fuller Unit.  The nurses got me all situated and started the very disciplined process of a blood transfusion.  I would be getting 2 units (pints) of blood and each one would take 3 hours.  I was told a few times about the 1 in 2 million risk of getting HIV or Hepatitis along with a risk of my body rejecting the blood and having to stop the transfusion.  About an hour after the first unit was started, I drifted off to sleep.

When I woke up, the first unit was almost finished and I felt, well, alive.  The term "life blood" had never been more real than at that moment.  It was like a miracle, all of the nausea and weakness were gone and I felt like a new man.  I was so happy that we figured out what the problem was and that I would feel better and be able to heal from the surgery appropriately.  The nurses were amazed at the turnaround and remarked at how it was like night and day from just a few hours before.  I thanked God and relaxed during dinner while Tiffany and my parents visited and the second unit was introduced into my body.  Tiffany left at about 9:00pm and I was still so happy and relieved as I got ready to sleep.  One funny side note is that I needed the nurse to bring me some earplugs and a bendryl in order to get to sleep.  My "roommate" was an elderly, hard of hearing gentleman who also happened to be a big fan of MTV reality shows and TNT Wrestling.  His TV was so loud I'm sure the whole floor could hear that wrestling match.  I was too happy to be irritated, and soon drifted off to sleep with my earplugs in.

The next morning I felt even more amazing.  They took my blood one last time and then I ordered a nice breakfast since I had an appetite for the first time in a week.  Dr. Hoepp and Holly came in early and he remarked at how different I looked.  Holly said it was like a miracle.  He said I was cleared to go home later that morning and that was that.  Tiffany packed up my things while I went through the discharge process after breakfast.  As we left, I thanked God and looked forward to healing up so we could start attacking the cancer.

Just a Simple Biopsy

The next step in the process was to have a biopsy of the tumor in my abdomen taken so that the pathologists could pinpoint the exact type of lymphoma at the cellular level.  This is very important in determining how they are going to treat it as far as the type of chemotherapy drugs, etc.  The best surgeon in the area is Dr. Hoepp, so that's who we wanted to do the procedure. (Side note: he saved my life 32 years ago when I was 13 months old and got a penny stuck in my throat.)  He's very hard to get appointments with, but we were able to get a pre op appointment with him right away for Tuesday, March 4th with the surgery scheduled for the day after.  Unfortunately there was a huge storm in the Mid Atlantic and Dr. Hoepp was stranded in Florida until later in the week.  His office worked it out and the appointment was pushed to Thursday and surgery Friday.

The pre op appointment was uneventful, although he seemed really concerned about how he was going to do the biopsy.  He showed us the CT scan and said the tumor is covering all of the major arteries and organs, so it would be more difficult than a simple biopsy.  His plan was to start laparoscopically and if he couldn't get what he needed, he would make an incision and get the rest to avoid risk. Sounded good to us.

Friday we showed up at the Elliot Hospital at 11:30 and were checked in for surgery.  I should mention that my sister Erin has been a nurse in the operating room there for over 10 years.  She wouldn't be in the room during my surgery, but everyone was aware of my situation and expecting our arrival. It was nice having so many people come in to say they worked with Erin and offer their support.  Once I was all hooked up and ready to go, our pastor and his wife stopped by to pray with us just before I went in.  If everything went according to plan, the procedure would take about 45 minutes and I would wake up in the recovery room and be able to go home the same night.  I remember being wheeled into the operating room and then the anesthesia kicked in and it was lights out for me.

My awesome sister and her family

When I opened my eyes next I was in the recovery room and I heard a lot of people around me talking.  On my right I saw Mia, who was my recovery room nurse and also a close friend of my sister's who I've gotten to know over the past several years.  She was asking me if I was in any pain, which I then realized that I was in a great deal of, especially in my stomach.  She told me that I had a catheter in, but I didn't register at the time that a catheter is for longer surgeries and wasn't supposed to be part of the plan for this one.  I looked up at the clock and noticed it was after 5:30.  Something was wrong.  Dr. Hoepp then came over and said "you're not going to remember this, so I'm sure I'll have to repeat it, but there were complications with the biopsy."

The surgery started out according to plan and he was able to get some tissue samples through the 3 small laparoscopic incisions, but the pathologist needed one more sample.  When he went back in for the last sample, "all hell broke loose" in his words.  My iliac artery on the left side was sliced open and began gushing blood internally.  Now here is another example where God's hand was with me: Dr. Hoepp is also a vascular surgeon, so he was immediately able to take action and make the repair.  Had he not been, they would have had to page one and I could have bled out.  As it was, I lost around 2.5 liters, which is around 40% of my blood supply.  So he made about a 6 inch incision from my belly button down to go in and repair the artery (initially holding it in his hand as I was told.)  This also required another incision about 4 inches long at the top of my thigh to insert a stent into the artery and feed it up to where the damage was.

At some point after my artery was repaired, my left leg started turning blue from lack of blood supply and they realized that I had a blood clot in the newly repaired artery.  He then had to reopen it to restore blood flow to my leg.  According to another doctor who was in the room, it was "very scary."  This stent saved my leg, and I'll be reminded of it every day by the 81mg of aspirin I have to take for the rest of my life and the official card I have to keep in my wallet.

After the artery was repaired again, there was still the issue of getting the rest of the biopsy.  Going back in laparoscopically was now out of the question, but he was able to get the rest of the tissue sample with the large incision already there.  Mission accomplished, I was then stitched up and sent to the recovery room.  Throughout the ordeal, my family was provided with updates in the waiting room, including Dr. Hoepp candidly explaining that "everything that could go wrong, has." I'm thankful for everyone who stayed with them to pray and provide support during such a stressful time.

After I woke up a little more in the recovery room, Tiffany came in to see me followed by my mom and dad.  I was then taken to the Intensive Care Unit to be monitored for the first night.  I was hooked up to every kind of monitor imaginable along with oxygen to help me breathe.  Tiffany fed me ice chips because my throat was killing me from having a breathing tube in for 4+ hours and was so dry from all of the pain medicine.  The nurses came in every hour throughout the night to take vital signs and check the pulse in my feet to make sure they were getting blood.  At first the alarm kept going off and they would yell "breathe Joe!" because apparently I wasn't.  I would force myself to take deep breaths until the alarm stopped and then doze back off until it went off again.

The next morning I was deemed stable enough to leave ICU and was moved to the Fuller Unit, which is the post op floor.  That is where I would spend the next 3 days and nights on a mostly liquid diet while regaining some strength and mobility.  The first day was rough when there was a glitch in my morphine drip and a delay in getting me more, but overall they took great care of me.  By Tuesday all of my vital signs were normal and my incisions were healing the way they were supposed to.  I was able to stand on my own and walk to the bathroom and back without a walker, so I was given the OK to go home that afternoon.

I was disappointed in the setback which will delay and potentially make chemotherapy even more of a challenge, but thankful to God for carrying me through.  All hell may have broken loose, but when that happens the Bible says in Isaiah 59:19 "When the enemy shall come in like a flood, the spirit of the Lord shall lift up a standard against him."

Happy to be home with my babies

This is my song for this experience.  Warning: it's hard and you probably can't understand most of the lyrics, but the chorus "I'm not ready to die" speaks for itself and the aggressive tone is how I feel about this fight with cancer.

The Lahey Family

Friday, February 28th, started like most days with Genevieve knocking on our bedroom door around 7:00am and asking to lay down with us for a few minutes. These are usually sweet times that Tiffany and I enjoy and this day was no different. After a few minutes I went to Nadia's room to get her up and we ended back in our room with Tiff and Genevieve for more hugs (or a "family pile" as Genevieve called it.) It was a great start to what was going to be a long day.

example of a family pile (minus me)

While I was making breakfast, my mom called and said they would be over to pick us up in 45 minutes to head to see the oncologist, Dr. D'Silva. She wasn't sure what might happen and said there was a possibility I could be admitted, so to pack a bag. I scarfed down an omelet, kissed the girls goodbye and we were off on our short 20 minute ride to the Lahey clinic office in Derry, NH. We arrived around 9:30 and I introduced myself to the girl at the check in counter of the small waiting room. "Oh! We've been waiting for you - come right over here! Lori! He's here!" she said as I sat down to check in and Lori, the nurse director came out to greet my family. "You're going to love it here, it's like a big family," she said, "and you're going to like Dr. D'Silva, he's a genius. Seriously, he's like the smartest person I've ever met."  I looked over my shoulder as I finished filling out my paperwork and saw Lori hugging my wife and mother. Compassionate geniuses. These were people I could get used to.

Soon after we were escorted back into an exam room. I was taken to a different room to have my blood and vital signs taken. Sam, the lab guy, is also a runner ("are those the Mizuno Wave Rider 14's?! I have the same shoes!") so we had plenty to chat about and are now bonded for life based on our choice of footwear. When I came back into the exam room, the social worker was talking to my family and we heard more tales about the mysterious Dr. D'Silva. "He's like a mad scientist. But not in a bad way!"

A few minutes later the suspense was over and Dr. D'Silva entered the small, crowded exam room and introduced himself to all of us with a smile. He then sat down and stared at my recent enhanced CT scan report for about a minute while we all held our breath and waited for him to speak. He sighed deeply while still staring at the report and said one word to himself: "wow." Didn't exactly give me the warm and fuzzies. This was real. He then stood up and asked me if I knew the average life expectancy of a male in this country. I guessed high 70's and he said "the average life expectancy for a male in this country is 83. You are 34, so my biggest concern is your next 50 years of life, not just this next year." OK, that's what I'm talking about, Doc. He then explained that there are over 40 different types of lymphoma and pinpointing the exact type is critical to determining the most effective treatment. When treated correctly, lymphoma has a very high cure rate, and he mentioned examples such as current Red Sox pitcher Jon Lester and former Pittsburgh Penguins hockey player Mario Lemieux who are both survivors. Good. Just give me a fighting chance.

The doctor stepped out for a few minutes and Tiffany and I both received a Reiki treatment during that time. Reiki is a type of type of therapy that focuses on relaxation, meditation, breathing, and light physical touch. It was definitely relaxing - kind of like a massage without the massage. It is areligious and not in conflict with our faith; it's actually a nice opportunity to meditate on scripture and pray.

When we came back to the exam room, Dr. D'Silva had our next steps ready. Good, some action. Let's do this. I would be going to a nearby hospital for a PET scan, which is a type of cancer scan that uses your metabolic system to determine the stage and aggressiveness of the cancer. There is only one hospital in the state of NH that has a PET scan machine (they apparently cost alot and don't get used frequently enough here) which is 2 hours away. All of the other hospitals share a contract with a mobile unit that travels around the state like a big cancer scanning tour bus. The unit was at the hospital right in Derry that day and I was able to get the last appointment of the day at 3:00pm. Thank you God. The only problem was that you couldn't eat before it which meant that my omelet at 8:30am would be the only food I ate until after 5 (the test takes 2 hours.) Oh well. I would also be seeing a surgeon the following week to take tissue samples that would be reviewed by no less than 3 different pathologists who are world renowned experts in lymphoma in order to come up with a final diagnosis and set the game plan for treatment.

We left with some action steps and then went home to kill some time before the PET scan. Tiff stayed with the girls to relieve her mom (who is absolutely phenomenal and who I'll talk about more in a later post) and my dad picked me up to go to the appointment. He knew exactly where to go, since he's survived 2 different types of cancer himself and is familiar with the drill. This is hitting him in a unique way, having to see his son walk down this path. But he's also able to support me in a unique way, a kind of an insiders perspective, which gives me comfort. More about him in a later post also.

The day ended with dinner at Texas Roadhouse where I made up for missing lunch. We had our team, our plan, and were ready for what the next week would bring (or so we thought.)

When life hands you lemons, go to Texas Roadhouse

Song that encompasses how I feel about everything happening (tearjerker warning):

Wait, what?!

If you're reading this blog then it's safe to assume you've heard the news: I have cancer. Lymphoma, as far as we know at this point and we'll find out the specific type in a few days. It's still fresh and I'll admit we had a period of disbelief because it totally came out of nowhere. "Wait, what?! How can I have cancer? I'm only 34 years old! I run! I drink green drink every morning! I have two young children and a third on the way! That's impossible!" So this blog is going to be my way of chronicling the journey. I want to be able to look back on this in the future and it will also provide a source to keep family and friends updated along the way. 

Before I get started on the background and details I want to say that we are doing well. The question we get asked most often is "how are you handling it?" Well, to say we were blindsided is an understatement. We had big plans for this year, I was training to run my first marathon and we were seriously contemplating a move to a different part of the country. And oh yeah we'll be welcoming our third child into the family in September. Despite all of that, I will say that my faith in God and His plans has never been stronger. As the verse in the blog descriptions says, He didn't say bad things would never happen, only that He would be with us when they did. So I know He's with us through this and there will be good that comes out of it, even if I don't understand it now. So we shift priorities and keep moving forward.

Background
We came to learn of the diagnosis when it showed up on a CT scan I was getting for what I thought was residual pneumonia. Last year I came down with pneumonia on two separate occasions. Once after returning from a family camping trip in June and the second time right after Christmas. Now I had never had pneumonia before in my life, so this was really bizarre. Over the past three years, I had really focused on my health, losing around 40 pounds by changing my eating habits and taking up running.

So after a week on the couch and another round of antibiotics, I was feeling almost back to normal, but not quite. Precious time was ticking away and I was anxious to jump into my marathon training plan. I figured my lung capacity would come back with time and I would just take it slow the first few weeks. Unfortunately, my lung capacity didn't bounce back this time as it seemed like every run was increasingly more difficult. I had a scheduled physical with my doctor at the end of February, so we talked about my symptoms and he ordered a chest CT scan for the next week as a precaution.

CT Scan #1
I should mention that my mother is a nurse (aka Mama Pit bull), so she had listened to my lungs before the scan and suggested that I get my own copy of the results from the imaging department. So early in the morning on Wednesday, February 26th, I went in for a quick chest CT scan and then headed in to work. The hospital notified me that the results were ready, so I stopped on my way home from work and picked up the CD and report that went with it. They had also sent a copy to my primary care physician, but he wouldn't be back in the office until the following Monday.

The report looked fine to me and I was happy to see that my lungs looked good. After that I stopped at my parents house to share the results with my mom. Her first words after reading the report were "we need to pray," which I was not expecting. At the very end of the report were the words "retroperitoneal lymphadenopathy - recommended enhanced CT scan of the full abdomen" which meant they saw swollen lymph nodes under my lungs and needed to get a better picture. Thanks to Mama Pit bull, I was able to get the enhanced CT scan scheduled for the next day.

CT Scan #2
So the day after my first CT scan, I went back to the imaging department for the enhanced scan. This one required drinking a specially formulated drink that would light up my insides for better visibility on the scan along with an injection. They called me when the results were ready, so I went to pick them up after work as I had the day before. It was deja vu all over again as I stopped at my parents house to review the results and my mom's first reaction was that we really needed to pray now. The results showed a significant lymph node swelling with a 19cm x 10cm tumor (about 7.5in x 4in) in my abdomen area that was wrapped around my aorta, interior vena cava, renal arteries, and pushing on my lungs and kidneys. The report indicated a strong suspicion of lymphoma and request to follow up with an oncologist.

At this point my head was spinning as it did not seem possible that I had lymphoma. I was  told by my primary care physicians office that he would call me on Monday to talk about next steps, but Mama Pit bull was already working the phones and calling her nurse friends to find the best hemotologist oncologist (blood cancer doctor) in the area. Tiffany and I were probably in a state of shock and did not want to believe this report. That night our pastor, Ed Hiers, came to our house to pray with us and provide some encouragement as we tried to process everything.

The Lahey Clinic
I began to see God's hand on the situation as I was able to get an appointment with one of the hematologist oncologist from the Lahey Clinic for the next day. He happened to be in one of their satellite offices in Derry, NH that day, which is about 20 minutes away for me. That day has enough to fill it's own post, so I'll save those details for the next entry. This journey has started very quickly for us and I will spend some time writing about where my head and my heart are in a later post, but I wanted to lay out the background first.