Friday, April 11, 2014

Living with Follicular Lymphoma

A few days ago, someone wrote a comment on an older post. It read:

My husband was diagnosed with FNHL in January 2014 and I read your story. Best wishes to your five years and can you tell me how I can help him. My kids are 13, 9, and 7. Just tell me how to make five years like you. Thanks.

The comment just broke my heart. Partly because I suddenly remembered pretty clearly how it felt for those first few months. The helplessness. The not knowing. The worry, especially about my kids.

But then I felt helpless again, because I'm being asked to give some advice about how to stay alive for 5 years. I've never felt like my survival has been under my control. If cancer is a game of poker, then getting the diagnosis is like getting dealt a really crappy hand of 5 cards with no connection. But my diagnosis was Follicular Lymphoma. That's like tossing 3 of your cards and getting a dealt a couple of 3's. Still a crappy hand, but hey, you're in the game still. You might be able to bluff your way to a pot. But it's all still beyond your control.

So what can I say? What kind of advice can I offer to someone who wants to know how I got to 5 years (now 6 years)?

Well, I can't say how I got there. I can't tell you that there is some miracle cure. There are no quick fixes to Follicular Lymphoma. As much as I's like to be able to sell you a bottle of something, I have nothing to sell.

All I can offer is some insight into the journey. Take it for what it is -- my story.
  •  The first advice I can give is the hardest to take. Try not to panic. I didn't say "Don't panic," because you're going to, I know that. But try not to. Follicular Lymphoma shows up in lots of different ways, some very slow growing, and some very aggressive. There's no way for me to know which type that the person who wrote the comment is dealing with. But it's been about four months since diagnosis, and there's no mention of treatment yet, so maybe it's slower growing. Here's what I say, and I know it's a risky thing to assume, but: when you are diagnosed with FL, you're probably not going to die tomorrow. You're probably not going to die next week, either. In fact, let's be conservative and say you're probably not going to die in a month, either. Let's not worry beyond that. Focus on what happens in the next four weeks. A scan? An appointment with the oncologist? A treatment? Yes? Focus on those things and think about how much they will help you. No? Nothing scheduled? Then  your oncologist is a little less worried than he might have been in other circumstances. In that case, take a deep breath. Go to your son's soccer game or your daughter's play. Have dinner with a friend. Kiss your spouse. Worry about this month, and only this month. Until you can breathe again, don't look to far into the future. It will only get you worried.
  • Start telling yourself that it gets easier with time. You're probably not ready to believe it yet. But you will at some point. I have found, and heard from other FL patients, that it takes about six months to start to relax and breathe more easily. Practice now. One day you will realize that it is noon and you haven't thought about cancer all morning. And that will be a really great day.
  • Learn what you can about your disease.  For me, knowing as much as I can about Follicular Lymphoma is a source of comfort. I feel like I can have a conversation with my oncologist and ask the right questions. And knowing for me is also a source of hope. I can track the progress of new treatments, get excited about trial results, and look toward the future. That gets easier with time, when you can see (and believe) that there's a future beyond the next month. 
  • Don't learn what you can about your disease. But sometimes this strategy doesn't work. Sometimes, especially early on, it's too overwhelming to learn so much, and it just does more harm than good. Every little detail can make you think, does this apply to me? And that, of course, is the opposite of the comfort and hope that we're looking for. So while I think that knowledge is power, I also think we all have to deal with this disease in the way that makes the most sense for us. I had a friend who had Hodgkin's Disease, and was pregnant at the time. She couldn't even look at the bag or the line during her chemo treatments. She is an incredibly strong, incredibly intelligent woman. But she wanted nothing to do with her disease while she was going through it. That's how she coped. So learn what you can about Follicular Lymphoma, unless that doesn't help. If you trust your oncologist, then do what he says and don't think about it.
  • Most importantly, live your life. It's easy to become paralyzed by all of this. I remember one day early on going through a nasty chain in my head. I had been given an opportunity at work, and I thought, I have no idea what's going to happen to me. I can't commit to this thing. I need to say No. And then I thought, if I say No to this, there's not much point in even working. I can't commit to much of anything long-term at work. And if that's the case, why even work? And if I'm not going to work, why even get out of bed? I might as well just be dead now, if I can't let myself commit to anything. It was not a happy day for me. I realized that I couldn't stop my life because of this disease. We never know the future, even the cancer-free among us. You don't need to act as if there's nothing wrong, but you can't let your emotions block you from doing the things that you can handle physically. Now, I'm not a big "Bucket List" guy. There are things I want to do, but it's too much pressure for me to keep a list and feel like I have to accomplish it all. I take opportunities as they come up. I try not to let Lymphoma hold me back. (Lack of money? Lack of time? Oh yeah. They hold me back. Lymphoma? No way.)
I don't know if I've answered the question. I'm guessing you were hoping for something that was easy and fast, some secret to reaching 5 years. I don't have one.

All I have is some advice for how to stay as sane as possible on the way there. As I said, there's a pretty wide range of possibilities with Follicular Lymphoma (where you fall on that scale is probably one thing that is worth knowing, and people have lived with the disease for a very long time.

Try to stay healthy, eat well and exercise, love your spouse and kids, do stuff that makes you happy, make your small corner of the world a better place, and do all of those other things you should have been doing before you were diagnosed.

And all of this applies to caregivers, too.


Virginia Miller said...

I'm two years into a diagnosis, and your thoughts ring true for me, Bob! All we can do in any case is live each day the best we know how, loving our family and friends and trying to make the world a better place to the best of our abilities.

Lymphomaniac said...

Amen, Virginia.
Hope you're doing well.

Anonymous said...

Hi Bob, its been a year and a month since my husband's FL diagnosis, initially I panicked, he faced the music calmly, eventually I got hold of myself, researched and went to MD anderson with him , our kids are 15 and 7 respectively, his Ct scan last week is stable and blood work is perfect! And remains asymptomatic with watch and wait, Now we are not intimidated by the condition anymore, we see it as a chronic disease that needs monitoring , and there are indeed days that the condition doesnt even cross our minds! Your blog got us through the most difficult time of our lives, its truly a Godsend.

Lymphomaniac said...

Thanks, Jeanne. I'm glad your husband is doing well, and I'm glad I could help in some small way. I hope he stays stable for a long, long time.

Anonymous said...

We hope the same for u as well Bob, health and happiness!

Anonymous said...

Its jeanne btw *^▁^*

Anonymous said...

Love your Blog. I was DX on March 2007 with stage 4 grade 3A fNHL. I had 6 rounds of Chop-R and 2 years of R Maintenance. 7 years and going strong. This Blog is an inspiration to everyone who was, or has a loved one DX with fNHL.
Thank you for everything!

Lymphomaniac said...

Wow. Thanks very much. I appreciate the kind words, and hope you get many more years of good health.