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.

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.