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How my experience with lymphoma inspired me to walk the length of the UK

The Bloodwise logo. Bloodwise appears in black text against a white background
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29 Jun 2018

David Costello is part of a group of American expats walking the Bryson Line, a route invented by travel author Bill Bryson who has joined the group for part of the challenge. The group aim to raise £100,000 for Bloodwise and a number of other UK charities. David explains how his experience with non-Hodgkin lymphoma helped inspire the ambitious challenge.

A group of fundraisers are pictured on The Bryson Line, a route which spans the UK
The Bryson Line group including David Costello (front centre) and Bill Bryson (in yellow cap)

One bright morning in mid December in 2012, while shaving I noticed I had a bump on the left side of my neck. At the time I had been feeling under the weather and assumed it was simply a swollen gland related to a cold.

I am a bit of a momma’s boy. When your momma is a nurse, that doesn’t help because you can run to her with any ailment that you have. I spared my mother the details of this latest ailment because, well, I had recently turned 36. And more importantly, she and her siblings were tending to their mother, who was in the final weeks of her life.

Christmas came and went. Sadly, my ‘grammy’ passed away. I was now having night sweats, which I assumed were a positive sign of my cold breaking. I decided to get my neck checked out in the new year. Off I went to my primary care physician. She said that I was probably correct in that it was a swollen gland from a virus, but just to be sure, I should go and see an ear, nose, and throat specialist.

A couple of weeks later, I was with the specialist and he agreed with my primary care doctor, but suggested a needle biopsy just to be sure. Then he said something I will never forget. I quote:  “Do not worry about this David, this is not cancer.” With that assured, I booked the procedure and went about my day.

The procedure seemed like no big thing. Have a needle stuck in your neck and go back to work; results in a week. When the results came, the specialist said “they look good but there is something that, although [it] doesn’t cause alarm, I would like to have a better look at. Let’s take the whole thing out.” Not a problem, surgery scheduled for mid-March.

On the day of the surgery, I took a taxi through a Boston snow storm to get to the hospital for 6 am. With the surgery done, I got a week off. It just so happened that the week off coincided with the Men’s NCAA basketball tournament. Happy days.

Two weeks later, I went back to the specialist armed with a new and cool neck scar, a cup of black coffee and the knowledge that I do not have to worry because this is not cancer. I was so confident, dare I say cocky, that I did not sit down in the office. I had a full day of meetings lined up, so I said something to the effect of “give me the good news and I am out of here.”

The surgeon said, “David, please sit down. I do not have good news: you have lymphoma.”

After that, he said a bunch of words and phrases I did not understand. I did understand that I needed to get to work on choosing an oncologist and team.

I went to work. That evening, I went to meet a new client whose wife had recently passed. What he said next is entirely true. In recanting how his wife passed away, he said:

“She fought through it all, but in the end, it was the lymphoma that got her.”

The timing for that story was not great.

I told my family. We all cried and asked questions to which none of us could not possibly know the answer. Meanwhile, I got some referrals and decided on my team: Dr. Hamdan and their crew from Beth Israel Deaconess Medical Center in Boston.

I had a PET scan to determine the scope of the cancer. I learned that, thankfully, I am not claustrophobic. I’d hate to do that if I was afraid of enclosed spaces.

The only time I was really scared about this situation was the night before I got the results of the PT scan and the moments immediately preceding getting the results. Every time I saw a pair of shoes in the crack between the floor and the bottom of the door to the examination room, I had a nervous breakdown in anticipation of those shoes coming in the room to tell me the bad news.

It turned out the shoes and the doctor walking around in them did not have bad news. As he put it: “Lymphoma sucks. With that as a baseline, I have positive news. You have stage 3 grade 3B non-Hodgkin lymphoma. It has a cure rate in the high eighty percentile.”

My treatment was to be six rounds of chemotherapy, which I would have started that day if I could. Since they were booked up that day, I had to wait a week or so.

12 April 2013. First day of chemotherapy. From the receptionist, to the phlebotomist, to the person who checks your vitals, to the nurses that hook you up to poison, nobody could’ve been nicer. It sounds odd but I really liked going in for treatment. I instantly felt comfortable there. I started and never finished five jigsaw puzzles, and ate some terrible turkey sandwiches and potato chips. I am off Wise brand potato chips forever.

My cocktail was a mixture of five drugs referred to as R-CHOP:

I did not do well with the rituximab. I broke out in hives. I was given an antihistamine but it was too late. I would have to have my first treatment cut short and come in the following Friday.

19 April 2013. Treatment was postponed again because of the city-wide manhunt for the two brothers responsible for the Boston Marathon bombing that shook the city four days prior on Patriot’s Day. The older brother was taken to the same hospital I was having my treatment, where he was pronounced dead.  

These two stalls to my treatment behind me, I was able to get the remaining five treatments done by August and was given the all-clear on 18 September 2013.

I felt awful at times, my hair fell out, and I had to stop playing sports. But in the end, I was very fortunate. I had it better than most. Chemotherapy is awful but there are many, many people that have had harder roads than me.

I am excited to be a part of The Bryson Line walk because I’m here, alive, and enjoying life because of the fundraising and efforts of people that have come before me. Treatment for blood cancers such as leukaemia and lymphoma have come on miles because of the money that has been raised to pay for clinical trials, grants, and salaries of the professionals that have made it their mission to see these dreaded diseases cured. Bloodwise understands this and it is why I try to help when I can.

The Bryson Line team set off on 11 June and aim to finish by 15 July. Follow updates on The Bryson Line Twitter feed or show your support for the team with a donation.

The Bryson Line is generously supported by Tanager Wealth Management.

If you have any questions or concerns about blood cancer, our Support Line is open from Monday to Friday between 10am and 4pm.

Comments

02.07.2018

David thank you so much for writing about your experience with blood cancer, and your journey which has led you to taking on this challenge. Without brilliant fundraisers and supporters like you, we couldn't fund the research and work that we do, so thank you. I'll be keeping an eye on the teams progress, good luck! Dawn @ Bloodwise