Wednesday, January 15, 2014

Six Years: Leaps of Faith

Today is my Diagnosiversary. It was six years ago today that I found out I have Follicular Lymphoma.

And four years ago today, I had my first Rituxan treatment.


A couple of months ago, my younger son went on an outing with a club he belongs to at his high school, dedicated to the great outdoors. He's definitely our outdoorsman; his brother and sister enjoy being outside, but not the way he does; he spends time walking through forests and picking through animal scat to learn what he can. He was like that even as a baby -- when we couldn't get him to stop crying, we'd take him outside, and it would calm him to just look around.

The outing he went on involved rappelling -- using a rope and harness to get yourself down from the top of a mountain, building, or whatever other tall object you happen to find yourself on with a rope and harness. In his case, it was a tall tree with a platform about 50 feet up. He was with a group of about 14 guys.

Now, my son isn't really afraid of heights, as such, but he really doesn't like the feeling of falling. Roller coasters are not his thing -- the sudden drop makes him really uncomfortable.

Of course, rappelling is pretty much ALL feeling like you are falling. The whole thing is about controlling yourself as you make your way down. 

This particular rappel was especially tough. Rapelling can be "free," just hanging in the air on your rope as you come down, or it can involve pushing off of the building or mountain, hopping down the structure a few feet at a time. For this rappel, my son needed to stand on the edge of the platform and lean back, push off the platform and then swing under it, so his feet hit the tree. Then he could hop down the tree, holding on to the rope.

This isn't an actual picture, but it should give you a sense of what it was like for him after he swung under the platform:

So this was a literal leap of faith. He was dangling off a platform 50 feet in the air and was supposed to jump and trust that his feet will land on a spot that he couldn't see.

Of course, he told me about all of this after it was all over. Ten guys went first, and he and three others remained, all scared to go. But he did it. He said it wasn't fun dangling on the edge of the platform, but once it was over, he felt like he could do it again.

Hours later, and with my feet firmly on the ground, I said to him, "But you didn't need to be scared. Think about it -- ten guys went before you. The rope was strong enough to hold them. And the guys who run the course wouldn't have put you in any danger. You should have known you were going to be fine."

Easy for me to say, since I wasn't the one dangling on the edge.

I was proud of him for taking the leap.

My mind kept coming back to this for a few days. And it finally occurred to me that this was all very much like having cancer.

We get that diagnosis, and we feel like we're hanging off the edge of something very tall, and we can't see anything below us. We suspect it's a forest floor. We can't even see the floor, but we imagine it must be full of sharp, painful things, or poisonous snakes, or deep water, or whatever else goes beyond whatever we have feared before. And we keep being told to take the leap, that everything will be OK. But we can't actually see the tree we're supposed to land on. And even when we do, we still need to lower ourselves down to whatever is waiting below. It's terrifying.

What helped me most, six years ago, was having someone say, "But you didn't need to be so scared. Think about it --people have gone before you. The rope was strong enough to hold them. And the guys who run the course will do their best to not put you in any danger."

If I was going to give advice to someone newly diagnosed with Follicular Lymphoma, it would be this:

There have been people who have been through this before. Seek them out. They have dangled off the edge. They have taken the leap. They know that the rope is strong, and that the tree is there, even if you yourself can't see it. Even better, they know where the footholds are. They will loan you gloves. They will be there to catch you at the bottom. They will shout your name all along the way.

No one needs to do this alone. It feels like you're alone, at the top of that tree, but you never really are. I've told the stories before: The best things I ever did, early on, were to open myself up and start talking to my wife, and then to join a support group online.

There are always people who can help.

Thanks for another good year, everyone.


Lois Lake Church said...

Blessings on your continuing healing, Bob, and on your ability to express your experience in a way that helps and inspires us all.

Robyn said...

Dear Bob-
I cannot even begin to express how inspiring and helpful you have been. We are three weeks out from finding out my 38 year old fit as a fiddle husband has grade1/stage4 fnhl. With three beautiful young children we have been tortured with the thoughts of him possibly not seeing them grow up. Your posts have given us so much insight, comfort, and hope for what lies ahead. Thank you for taking the time.

Tom Buck said...

Beautifully written Bob. Congratulations on your anniversary. We are all cheering you on from below and looking forward to enjoying your company for many more to come.

Tom Buck

Anonymous said...

Great post!


Lymphomaniac said...

Tom, Lois, and Steve -- thanks very much. I always appreciate the positive feedback.

Robyn -- sorry to hear about your husband's diagnosis, but I'm glad I can help in some small way. If you've been reading, then you know I can relate to a 38 year year old, healthy father of three who gets such a shocking diagnosis. I hope you'll keep me updated on how he's doing. Good luck.

Heather said...

Haven't ever responded to a blog before, but did want to thank you for keeping us all up to date with research. I'm in the UK, 8 years in now after R-CHOP and completely fine. It was the mention of your shoulder that got me to write - it was an MRI after my totally unrelated rotator cuff injury that identified the primary bone FL lesion. No typical symptoms at all.

Lymphomaniac said...

Hi Heather.
Thanks for writing. Glad I could be your first ;)
That's quite the story about discovering your FL through an MRI. Such a weird disease -- it never really makes itself known in a traditional way.
Glad to hear about your 8 years. That CHOP is wonderful stuff. I hope it keeps doing the job for you.

Robyn said...

Thanks Bob- one month out now and three opinions from specialists in the bag. You would think we would be at ease with a plan...not so much. All think we could watch and wait the limited symptoms. But one suggests rituximab only may be suitable and another suggest to start r + b. ugh! So torn. With a newborn and a 7 and 3 yr old. Worried about having him do the more aggressive approach and being sick for six months. Rituximab for you seemed to work well. Will return to our local specialist armed with more questions. But if you have any insight please throw it my way. As I view you as an expert in this field :). Also do you have any suggestions for online support groups/blogs that I should check out.


Ps. Sorry to hear you have to have surgery. I will tell you I had a coworker have rotator cuff surgery on both arms in a two yr time span. He was out 6 weeks each time but did great once returned. Continues to be active.

Lymphomaniac said...

I think it's great that you're getting so many opinions. Not surprised at all that they disagree; the lymphoma specialist I saw years ago told me if he put my case before 10 oncologists, they'd give him 12 opinions. Look at that positively -- you have lots of options.

I can't tell you which way to go, but I will say this: keep doing what you're doing and making lifestyle one of the things that guides your decision. Not just thinking about physical side effects, but emotional ones, too. W & W can be tough emotionally, though plenty of us have learned to deal with that. I think all of them suggesting W & W is a good sign -- it's still growing slowly at the moment.

The group I belong to is at The people there are knowledgeable and supportive. Ask them questions about their experiences with the treatments. You probably won't get definitive answers, but you'll get more information, especially about things like how B + R effected them day-to-day.

Good luck to you and your husband. Keep hugging those little ones.