John Perkins

Heather's Story

During the two years from his diagnosis, we were dealing with a lot of uncertainty. He never went into remission and it was one of those situations where you almost feel as though the chemo made it worse rather than making it better because he wasn't really having any symptoms. Prior to being diagnosed, he wasn't sick. He was diagnosed by accident and then when they did the bone marrow tests, they found lymphoma cells. Initially they weren't going to treat him right away; they said they wait and watch. But when they found the cells in the bone marrow they said that automatically makes it a stage four and therefore, they needed to start treatment. We had been told he had Follicular Non-Hodgkin’s Lymphoma and that the normal course for that is you get treated and go into remission for a few years, have another occurrence, get treated, go into remission again and so on. As time goes on, the remissions tend to get a bit shorter, but you know that he could have lived quite a long time with this. I guess with everything when there are averages, there has to be somebody who's on the short end of the scale, he was on the short end of the scale. They looked at doing a bone marrow transplant on him, and none of his 6 siblings were a match for bone marrow. They would have had to go further afield to the bone marrow bank, but they had to get them in remission first, and that never happened.
His hematologist had just been offered a new treatment. There was a clinical trial going on for a similar type of treatment, that they couldn't get John into. It was one where it was a kind of nuclear medicine thing where there was just one treatment you would get, but the doctor had been offered 2 treatments. He was going to give one to John, and one to another patient. They had to send somebody down to show the staff here how to administer it, safely and everything, because of it being radioactive. It was Christmas time so the training didn’t happen and then on January 2nd of 2007 John got up and started walking circles. I thought maybe he had a stroke or something but it turns out that it had moved to his brain, and once it crosses the blood-brain barrier they couldn’t give the treatment anymore. He died 23 days later.

There was a lot of uncertainty because we kept waiting for it to be in remission so that you could then do something. Since that never happened, it was difficult to make plans for things. When you're going into the med-day unit on a regular basis, it's hard to go anywhere. Once he died, I wasn't planning to be a widow at that age, so it was like “now what?”. There was a period of time of just trying to figure out what I was going to do, and whether to keep the house or sell the house, all of those things. It takes a while to adjust to coming home after a meeting or other event and there’s no one there to talk to. I would see something on the news and be excited to talk to John about it, and then remember that I can’t talk to him anymore. But you do adjust, you go on with your life, you don't ever forget. There are always going to be things that happen that remind you. What was really weird is that, I had a hard time going to the grocery store for quite a while afterwards, for some reason or other. Every time I went to the grocery store it really made me think of John. And I think, everybody probably has like one thing that is more difficult than others to do after somebody dies.

I initially tried to make contact with LLSC locally, but you guys weren’t here. And I did finally make contact with the national office, which was a huge challenge. I’d have people ask about making a donation to the foundation, but couldn’t find an address for them. I did contact them to say I was interested in volunteering in some way. The Executive Director was about to change and someone would get back to you. They never got back to me, and I never followed up with it. And then my daughter did the Light The Night walk a couple of years ago with her work. She walked in memory of her father.

I occasionally donate, and most recently when I saw about the donations being matched, I thought it was a good time to make one. And then you called to say thank you.

If I could give advice to those affected by blood cancer during this pandemic it would be to find ways to connect with people as much as you can. Whether it’s one on one, or a virtual coffee chats to virtual cocktail parties, just talk to people. I think too many people won’t talk about what they're going through, whether it's the person who is going through the disease themselves or whether it's family members. We don't like to talk about death, or things that could potentially lead to it, we’re afraid to talk about it. I’ve had both uterine cancer and breast cancer, both of them fortunately very early stage. I, at one point, was one of these that didn’t want to tell anybody about it. But I have learned that I should talk about these things because people don't know about it. People would say to me, with John having Non hodgkin's lymphoma “Well, why can't you just cut it out?”. Because it's in the blood, but they don't seem to understand that. Because we don't talk about these things we suffer in silence. A lot of people don't really want to hear it, but I think the more that people talk about it, then the more open that others are going to be to hear about it.

My final words are that we have to learn to be advocates for ourselves. And for family members, when it comes to medical issues, it is important, to educate yourself on things such as making sure that you use reliable sites on the Internet, that you know what to ask your healthcare professional. And when you start advocating for yourself and asking questions, that shows your doctor you are interested.
If you’re someone with the illness, it’s also useful to have somebody else with you. The only time I’d let my husband go to the doctor by himself was when it was just a routine appointment. We would hear things in different ways. If you don’t have a spouse or partner, find a friend to go with you. I’m a much better advocate for someone else than I am for myself. I think we all need those people who will support us and advocate for us.