(This is a highly personal post so if that isn’t your thing then you should move on.)
It’s not 2015 yet but I already know what I learned in 2014. I have Follicular Lymphoma. Here’s my story.
Stomach Pain
Last year I began to have some stomach issues. The first time it looked like it might have been food poisoning, which I blamed on Chobani. One minute I was fine and the next I was throwing up and had abdominal pain and bloating for the next 48 hours.
I binge-watched action flicks until I was okay. Afterwards I felt a small twinge on my left hand side of my lower stomach. I didn’t want to be the guy that let something go and have something bad happen so after three weeks I saw a doctor. He thought it might be diverticulitis and suggested a change in diet and referred me to a gastroenterologist.
I remember talking to a school-parent friend at a Halloween get-together about diverticulitis. It sounded both dreary and scary. I was bummed.
Colonoscopy
In early April of this year I got over my fear and got a colonoscopy and endoscopy. The prep for this was truly nasty – chugging a substance that tasted like purple chalk death and then having what looked like pee come rushing out of your bowels for the next 24 hours.
The results of the test were basically clear. No diverticulitis and only some mild irritation was noted. In short, idiopathic IBS. Or for the rest of us, ‘you have some screwed up intestinal issues that don’t seem to have a known cause.’
This was a relief to some degree but also not. What the hell was causing my flare ups?
Flare Ups
Because over the course of the year I’d have small flare ups. Usually I’d wake up at 3 or 4 in the morning with the pain, go downstairs and take some Tylenol, Gas-X and/or Mylanta and lay on the couch watching TV to distract me from the cramping pain until I fell asleep.
Food seemed to be the culprit. I’d drink beer and then have that cramping abdominal pain. I’d eat onions and that seemed to trigger it. Never were these flare ups that long nor exceedingly painful. They were 5-6 on the pain scale. I figured it was just my stupid intestines and getting old. So I gave up beer (oh sweet IPA) and avoided onions.
I had maybe 5 or 6 flare ups of varying intensity and went for a long time (3 or 4 months) with no flare ups at all.
Happy Birthday
Friday night was my birthday and I was going to a nice restaurant with my wife, daughter and parents. By the time we got home I could tell I was having a flare up. I took Tylenol and some Mylanta but the pain got more intense. At 11pm, after about 3 hours of truly intense pain (8-9 on the pain scale) I drove myself to the ER.
I checked-in and sat there tapping my fingers together as the pain surged and watched Volcano with Tommy Lee Jones. Once in the ER they pumped me with 4mg of morphine (wow is that a strange feeling) and took at CT scan of my abdomen.
Hospital
Soon after the CT scan I was visited by a doctor who said they wanted to admit me to the hospital because they’ve found abnormal lymph nodes on my CT scan that needed more investigation. When I pressed her she admitted that the worry was that what they were seeing might be lymphoma.
The world just became very clear and the focus of things shifted. I’m not saying I believed it right then and there but for whatever reason it felt true and just like that I felt the axis of my life changing and I simply had to adapt.
I called my wife at this point and gave her the news. I was stunned and scared but numb too and not just from the morphine.
Diagnosis
On Saturday I was officially admitted to John Muir Medical Center in Walnut Creek. I noted that my room was on the Oncology ward and when I saw the Oncologist she said that, in her opinion, the odds that it was Lymphoma was 70-80%.
The best way to tell was to get a biopsy of one of the lymph nodes and the fastest way to do this was for me to stay in the hospital until Monday when that department was working. So that’s what I did.
It wasn’t horrible but it was odd laying there in the oncology ward watching football, an epic 18 inning Giants game win and a marathon of Bar Rescue.
The biopsy itself was a piece of cake but the waiting was the worst part. Because at this point I think I’d come to terms with the idea I had cancer. Sure I read the test results and tried to find evidence that it could instead by some sort of infection. Many House jokes were made. Sarcoidosis anyone?
But Wednesday around mid-day I got the call that confirmed the diagnosis. I had follicular lymphoma.
What’s Next
I’m going in for a bone marrow biopsy tomorrow (wow, that hurt) and a PET scan next week (that was easy) to determine the true severity of my lymphoma. (Do you capitalize it or not? I don’t know but I choose not to give it capital status right now).
From there it’ll be a 6 month regimen of chemotherapy. I’m already busy researching what specific cocktail might make sense for me and will discuss that with my oncologist after all the results are in. But it looks like I’ll be starting treatment by the third week of October.
I will kick cancer’s ass.
Make no doubt about it. No matter the severity I will beat this ugly thing to the ground and kick it a few times on the way down in hopes that it won’t return. Mind you, it probably will. But if it does it will get another beat down.
Lymphoma isn’t curable but it’s also not fatal.
Follicular lymphoma (FL) is not considered a curable cancer, chiefly because it is considered an indolent, or non-aggressive, cancer. However, ‘incurable’ should not be mistaken in this instance for ‘fatal’, as most patients with FL will not die from their lymphoma. It is considered a manageable disease, so often patients will endure some form of therapy, then go from months to years without any therapy or symptoms, then take up some form of therapy again when necessary.
So the odds are that I won’t die of Lymphoma. But I’ll die of something else! Oddly, that’s pretty comforting. My goal is just to be here for as long as I can (like 40 more years damn it!) so I can see my daughter grow up (oh man, getting teary eyed) and live a great life with my wife.
I don’t want lymphoma to define my life. So I absolutely plan on working during my treatment. However, I will probably scale back on new clients (even more), may need some flexibility and may not be able to travel. I’ll know more soon.
Lymphoma is an unwanted guest but will be a speed bump in the scheme of things. So while it’s important to manage this disease it’s also important to love the life I have and to keep doing most of the things I normally do.
What You Can Do
Right now there’s not much others can do. I’ve got a very supportive family here and access to wonderful healthcare. Of course I appreciate your thoughts and encouragement as I kick cancer’s ass.
I’m a believer in ‘particles’ and magical thinking. (In my spare time I chant ‘I’m going to be okay’ over and over again.) So think of me getting better. And if the time comes when I need the support from a larger group I’ll absolutely reach out.
Perhaps I’ll just keep updating this post with my progress. I’m not sure I want to start a whole new blog (cancer doesn’t deserve that) nor do I want to have multiple posts here on this topic. Because I do intend to keep blogging normally.
Thanks for reading and if you want to keep up on my progress you can jump over to my CaringBridge page.
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Comments About What I Learned In 2014
// 205 comments so far.
Mark Traphagen // October 09th 2014
As a cancer survivor (so far! – rectal cancer, four years since chemo), this really hit home. Sending every good thought you’re way my friend.
AJ Kohn // October 09th 2014
Thanks Mark. Cancer survivor for sure my friend! Nice going. I might want to chat with you offline about your chemo experience.
Chris Countey // October 09th 2014
Thoughts sent your way. Get well!
AJ Kohn // October 09th 2014
Thanks Chris. I’ll take them all and plan on getting well soon.
Jon Henshaw // October 09th 2014
You will be in my magical thoughts. Go forth and kick its ass!
AJ Kohn // October 09th 2014
Thank you Jon. That means a lot. Stretching my legs now.
Lisa Williams // October 09th 2014
Shared like a data analyst who knows how to assess the data, define a strategic direction and kick ass on the goal. Sending you magical thoughts
AJ Kohn // October 09th 2014
Yes Lisa. I’m a logical thinker who likes to figure out a way to fix things. So … this is just a very important project. Which means I’m just going to give it everything I have.
Eric Enge // October 09th 2014
AJ – you have my support. Just let me know what ever I can do to help, and I will send thoughts of you kicking this things ass your way every day.
AJ Kohn // October 09th 2014
Thanks Eric. I appreciate the offer and the thoughts. I’ll probably need them more later on down the road.
Bryson Meunier // October 09th 2014
AJ, thanks for sharing this inspirational post. Reading this and being a regular reader of your blog, I believe you will kick cancer’s ass. Sending good thoughts your way until you do.
AJ Kohn // October 09th 2014
Many thanks Bryson. It’s nice (really nice) when others believe too.
Patrick Hathaway // October 09th 2014
Wow, that was a shock. Way to handle it though – a truly impressive reaction.
Whist ‘magical’ is too unscientific for me (surprised it isn’t for you?), I totally believe that a positive mindset can make a difference. Go kick its ass.
And by the way, I’m sure anybody that knows you or has read much of your inspirational work would agree…
“I don’t want lymphoma to define my life.” – Whatever happens from here on out, it won’t.
AJ Kohn // October 09th 2014
Thanks Patrick. I have some odd experiences with magical thinking. While I’m a very scientific guy I really feel like there were things I did that might have helped bring us our daughter. (That’s another long story.) Best to cover all the bases 😉
Ann Pohl // October 09th 2014
You’re going to be okay – I like that chant and way of thinking 🙂
Thanks for sharing your experience. You’ll be in my magical thoughts as well.
AJ Kohn // October 09th 2014
Thank you Ann. It helps when I hear others say that.
Christy Correll // October 09th 2014
You will kick lymphoma’s ass, just like my grandfather has been doing for 12+ years now!! And you will also be in my prayers, AJ. Thanks for sharing your story. <3
AJ Kohn // October 09th 2014
Love hearing about your grandfather Christy. That … seriously makes me feel even more optimistic. 12+ years get me to my daughter’s 20s … aww, teary eyed again. Thanks for sharing your story and for your encouragement.
Glenn Gabe // October 09th 2014
Amazing post AJ, and I’m sorry to hear the news. But like you said in your post, I’m sure you will kick its ass. 🙂 I look forward to your updates in the coming weeks and months! Good luck with everything.
AJ Kohn // October 09th 2014
Thanks Glenn. I’m stretching my legs and getting ready for that ass kicking.
Mark Traphagen // October 09th 2014
AJ feel free to contact me for that conversation any time.
Annie Cushing // October 09th 2014
I’m so sorry to hear this, AJ! Cancer should have been condensed to four letters. I hope the treatments take effect quickly with minimal disruption!
AJ Kohn // October 09th 2014
Yes Annie. A four letter word indeed. I hope what you hope for as well!
Vinny La Barbera // October 09th 2014
Sending my thoughts, prayers and strength to you AJ.
AJ Kohn // October 09th 2014
Thanks Vinny. It really does mean a lot.
Phil Buckley // October 09th 2014
I’m with Jon in sending you all the magical thoughts I have in the cauldrons.
Stay strong my friend!
AJ Kohn // October 09th 2014
Thanks so much Phil. The more the better!
Rick Bucich // October 09th 2014
Not sure what to say or feel at this moment as this is the second time in a month I’ve had to deal with a diagnosis like this. Being somewhat local, if there is anything I can do…
Stare it down and kick it’s ass
AJ Kohn // October 09th 2014
Thanks Rick and I hope your other diagnosis is going as well as it can. I appreciate the offer for sure.
Alan Bleiweiss // October 09th 2014
AJ,
You definitely have my thoughts and visualizing complete healing!
AJ Kohn // October 09th 2014
Thanks Alan. I really appreciate that. I definitely see that myself.
Dev Basu // October 09th 2014
Stay strong AJ. Your positivity is inspirational.
AJ Kohn // October 09th 2014
Thanks Dev. I’m just doing what feels right.
Jim Ribinson // October 09th 2014
I’m very sorry to hear this news, AJ, but your reaction and attitude are truly an inspiration. Just as you’ve helped so many people in your professional community, there will no doubt be many people with FL who are helped a great deal by reading this.
AJ Kohn // October 09th 2014
Thanks Jim. I can only be who I am – which is what I’ve done professionally as well. And I like to write. It’s therapeutic for me. And if others get something from it, all the better.
Ramesh Nair // October 09th 2014
AJ, here’s to the next 4 decades of health and happiness!
AJ Kohn // October 09th 2014
Exactly Ramesh! Love it. Thank you.
Patrick Coombe // October 09th 2014
AJ – let us know whatever you need my friend we got your back!
AJ Kohn // October 09th 2014
Thank you Patrick. I really appreciate the offer of support. It means a lot.
claudio // October 09th 2014
good luck man
keep it strong
AJ Kohn // October 09th 2014
Thank you Claudio. The outpouring of support certainly helps me stay strong.
Ben Fisher // October 09th 2014
AJ,
Hats off to you man. I have a family member who suffers daily with chronic issues, but is a tough fighter. More than 23 years ago, diagnosed with 3 years to live and is still here alive and fighting tougher than Mike Tyson, you can do it!
AJ Kohn // October 09th 2014
Thank you for sharing that story Ben. While it sounds like a terrible burden it does show that you can fight and claw and beat whatever odds are put in front of you. I will do it!
Matt McGee // October 09th 2014
AJ, you will be in my prayers. Keep that fighting attitude and stay strong. If you need anything, please speak up.
AJ Kohn // October 09th 2014
Thanks so much Matt. I truly appreciate that and will speak up when/if needed.
Phil Rozek // October 09th 2014
FL vs. AJ: not even close. I know you will kick lymphoma’s butt to Pizza Hut, but here’s to hoping you do it with a minimum of hassle and discomfort.
In the meantime, be on the lookout for some get-well-soon “particles.”
P.S. It wasn’t a challenge in the same weight class as yours, but after I contracted bad Lyme disease this past June I found writing pretty therapeutic. Your posts are fun to read, so they may not be fun to write. But there’s a special medicine in there…
AJ Kohn // October 09th 2014
Thanks Phil! I’m hoping it’s not going to be a Rocky-like battle with me having to take a beating before I knock FL out but either way I’ll prevail.
Sorry to hear about your Lyme disease. That’s no small thing. And the writing … it helps.
Neil Ferree // October 09th 2014
Its amazing what you can do when you have too A.J. That old cliche is oh so true :: what doesn’t kill ya, makes you stronger. This past January, the docs at the VA told me the biopsy was cancerous. A couple weeks later they removed a rack of teeth, way too much of my jaw bone and fed me through a tube for 10 days. I got lucky and didn’t have to deal with chemo, and while I’m not out of the woods, the outlook is looking brighter than before. You’re a good man and I wish you well. Peace brother :: Neil
AJ Kohn // October 09th 2014
Wow Neil. That is … inspiring. I wish you peace and health!
James Norquay // October 09th 2014
Wishing you the best AJ, my mum had stage 4 cancer in 26 lymph nodes and she is still alive to this day and that was 5 years ago, doctors gave her months to live. It was lucky that for her type of cancer they had a new treatment on the market at the time and chemotherapy did work.
I know how bad colonoscopy and endoscopy’s are I am only 27 and I have already had to have 2 due to food poisoning related issues in the past.
Just stay positive and try all the treatments possible, anything is possible. All the best.
AJ Kohn // October 10th 2014
Inspiring stuff James! Thank you for that and I feel for you with those colonoscopies. Or the prep at least. Thanks again for the support.
Rohan Ayyar // October 09th 2014
AJ, sending you a truckload of particles… I’m sure every comment here will help you that bit towards getting better.
It’s a good thing you moved quickly. My mother was diagnosed with colon cancer 20 days back. She had the tumor removed last week. We’re waiting for the post-surgery biopsy results.
Don’t just kick it bro, crush it’s face. Quash every ant with an elephant foot.
And keep the posts coming, can’t do without them.
AJ Kohn // October 10th 2014
Rohan,
Thank you very much and my best wishes and thoughts on your mother’s biopsy results. I’ll keep the posts coming and plan to stomp it as hard as I can!
Iain Bartholomew // October 09th 2014
Sending best wishes to you and yours, hoping that those around you are able to share in your positive outlook. Tough times, no doubt, but good to see you upbeat and thinking constructively.
I have no doubt that will help immensely.
AJ Kohn // October 10th 2014
Thanks Iain. And my wife is staying positive too and my daughter is very resilient and keeps things upbeat just on her personality alone. It all helps. This comment helps!
Nathan Johns // October 09th 2014
Positive thoughts, wishes, and particles your way my friend. I hope you’re able to enjoy a nice IPA when finished with treatment.
AJ Kohn // October 10th 2014
Thanks Nathan. And yes, perhaps once it’s all done my stomach issues will be gone and I can enjoy the occasional IPA. Here’s do raising one sometime in 2015.
Jacob Folmand // October 09th 2014
Happy bright morning just turned to having stomach pain. Thanks god – its that version of cancer. I have a frined in the GYM where I train and he has been living with lymphoma for several years – This shit won’t brake you, and science gets closer every day / year for better threatment. No matter what – this just makes the point, that we shall appreciate for everyday we have in this life, with the familily and friends we love! – I wish you all a nice weekend!
AJ Kohn // October 10th 2014
Thank you for another good story Jacob. And you’re right. The science and treatment is getting better every day but either way I will continue to appreciate all I have in my life, which is a whole lot.
Aires // October 09th 2014
God is always there. Don’t forget Him.
TooScared // October 09th 2014
I’m sure I have similar, have all the symptoms, but are just too scared to do anything.
I’ve told no one, not seen a doctor, but wake up every morning saying today may be the day I make an appointment.
After reading this, today may just be the day (but I doubt it).
AJ Kohn // October 10th 2014
TooScared, I can only say that the fear is often more debilitating than anything else. It’s different for everyone, I know and easier said than done but I hope you make that call.
Matt Cutts // October 10th 2014
Hey there, I just wanted to say that I’m thinking of you and wishing you the very best to beat this cancer down and keep kicking it until the lymphoma cries uncle.
AJ Kohn // October 10th 2014
Thanks so much Matt. I really appreciate the thoughts and look forward to hearing those cries soon.
Andrew Akesson // October 10th 2014
All the best AJ, Im sure the entire SEO community is thinking of you.
AJ Kohn // October 10th 2014
Thanks Andrew. It’s certainly been … overwhelming to see this type of response and support. I know I’d get some but …
Bill Slawski // October 10th 2014
Hi AJ,
I spend a lot of yesterday at an airport or on a plane, but I learned about your diagnosis from a friend who cares a great did and didn’t leave a comment here. I imagine that there are quite a few out here. We’re sorry to hear the news, but I imagine so happy to hear your refusal to let it bring you to your knees. There are lots of good vibrations and positive thoughts flowing in your directions.
I cheered when you wrote that you will keep on blogging and won’t let lymphoma take that away from you. There are a lot of us who want to help you, in whatever way we can,kick cancer’s butt. Become better, AJ.
AJ Kohn // October 10th 2014
Thanks Bill. And yes, I suppose there were a few folks who were in the thick of things down in Vegas. I can feel those good vibrations and positive thoughts and really appreciate them all.
I tend to think I’ll be slightly less active and won’t be out as much so I might write even more during treatment. Can’t promise that but I think it’s possible. So more posts to come. I don’t want this one to sit on the front page too long anyway 🙂
Barry Adams // October 10th 2014
I’m not a religious man, but I will send you all the positive thoughts I can, AJ. You will kick cancer’s ass, of that I have no doubt.
AJ Kohn // October 10th 2014
Thank you Barry! It’s great when others share my determination and I very much appreciate that positive energy.
Patrick Jordan // October 10th 2014
Hey AJ
I look forward to updates when the ass kicking commences. You have exactly the right attitude and it’s amazing that you were able to write about this so eloquently.
I’m another survivor, as Mark T says so far. My doc told my wife I likely wouldn’t see my daughter’s 4th birthday. She’s an amazing 11 year old now and we just had a superb daddy-daughter dinner out last night.
Your attitude is already 100% better than mine was for my first year or more after learning I had cancer. I did let fear consume me for far too long and felt almost comatose getting through days. It took me far too long to wise up and make the most of life each day.
I’ll definitely be following your updates and enjoying your writing, as always.
AJ Kohn // October 10th 2014
Patrick,
Wow. First off, congrats! Cancer survivor FTW! I think it must be immensely harder when the docs are telling you something so awful. I haven’t had that yet. I’ve had the opposite in fact with the docs telling me this is something they can help me defeat.
I’m just doing what I feel is necessary. I’ve had some other rough times in the past and I’ve learned that you have to let go of the future you thought you’d have and embrace the one you do have. So the future I thought I’d have is going to be different. No sense pining for the one that could have been because it just doesn’t exist. So in the hear and now I just want to embrace it and be determined – determined to beat this and determined to enjoy my life as I do and afterwards.
Congrats again and thanks for your encouragement.
Aaron Friedman // October 10th 2014
Oh gosh, AJ. I just chatted with you and you didn’t let that on AT ALL. Thoughts. Prayers. Magic. Sending all that your way. F#*k Cancer. Kick it’s Ass!
AJ Kohn // October 10th 2014
Well Aaron I didn’t know any of this at the time, outside of the stomach issues I’d had over the past year. And that was a fun talk! Thanks for everything.
Aleyda Solis // October 10th 2014
Hi AJ,
I’m so sorry to hear about this … my thoughts are with you! Thanks for sharing with us something so important and personal.
I have experience living with someone with cancer and being very close during the chemo treatment process (my grand-mother, diagnosed with breast cancer, beat it more than a decade ago… now she’s 85!)- I know how important it is to keep your spirit and attitude positive in every moment and have people you love close. Please, keep positive always!
With the right treatment and a positive attitude I’m sure you’re going to beat it 🙂
Stay strong!
Aleyda
AJ Kohn // October 10th 2014
Aleyda,
Thank you for sharing your personal experience. That’s really inspiring! Go grand mom! I’m sure there will be days when I feel blue but I am adamant about not letting it suck me down that hole. Staying positive is part of getting better in my book.
Nick LeRoy // October 10th 2014
Holy crap. Sorry to hear about the AJ. You and your family are in my families thoughts.
AJ Kohn // October 10th 2014
Thanks Nick. I really do appreciate it.
Maggie Copeland // October 10th 2014
Kick cancer’s ass! I know you’ve got it in you to come out on top of this fight.
AJ Kohn // October 10th 2014
I sure do Maggie! Thanks for your encouragement.
James Svoboda // October 10th 2014
Hey AJ,
While reading this I was thinking that I’ve known (loose term for interwebz-only friendship) you for what seems like a decade and we still haven’t met. I don’t know how this has happened, but also figure that we’ve each got 40+ more years to do so. With a wife and kids myself, I understand the teary eyes part. All my best wishes and thoughts are with you.
James
AJ Kohn // October 10th 2014
James,
The Internet has changed things and now there are a number of folks who I count as friends who I’ve never met in person. And it’s heartwarming to have them wish me well during my battle. Thanks for your wishes and thoughts.
Gene Eugenio // October 10th 2014
I’ll include you in my family’s prayers, AJ. God bless you and keep you. Hang in there. My uncle passed due to Lymphoma and I’m all too familiar with cancer since it also took my mom and two aunts.
AJ Kohn // October 10th 2014
Thanks Gene.
Bill Sebald // October 10th 2014
I have no doubt you will beat this. I truly believe that positivity is the best medicine. I’ve been very close to cancer via my friends and my brother and they were all positive and are now cancer free today. You got this brother!
AJ Kohn // October 10th 2014
Great to hear that your friends and brother are all cancer free now Bill. Thank you so much for the encouragement!
Donna Fontenot // October 10th 2014
You definitely have my thoughts sending you positive reinforcement! I’ll think of you often and continue to encourage you, even when you aren’t aware I’m doing so. Now go kick that cancer’s ugly little ass, AJ! You will be the victor!
AJ Kohn // October 10th 2014
Thank you so much Donna. I know I’ll need that surprise support during this journey. Great to have other believe in the outcome as forcefully as I do.
Dawn // October 10th 2014
How brave of you to share this.. You certainly strike me as a very determined fellow with a great way of thinking. Kick it’s butt as you Americans say 😉
AJ Kohn // October 10th 2014
I don’t know if I’m brave Dawn. I’m a writer so it’s therapeutic and I refuse to make this some sort of dark secret. Thanks for the kind words and I’m getting ready to kick butt for sure.
Laura Crest // October 10th 2014
Wow, AJ — your courage in both facing down FL and sharing what you’ve gone (and are going) through so honestly is humbling. Know that I’m sending good, healing particles your way (yes, I believe in particles too). The C word is terrifying; I’ve had my brush w/it too (not FL) and have a monitoring program in place. Yes, you will kick cancer’s ass; I believe that with all my heart. The world would be a lesser place without you.
AJ Kohn // October 10th 2014
Thanks so much Laura. I’ll take those particles and I’ll send some back your way for your brush with cancer. It’s great that others believe. It helps so thank you!
Markus Allen // October 10th 2014
AJ…
PLEASE STOP EVERYTHING YOU ARE DOING AND READ THIS…
The “cancer” industry is a HUGE business.
When you have “cancer”, the industry nets obscene profits.
Doctors give high fives on the golf course when “cancer” patients like you come into their office…
Most people are misdiagnosed with “cancer”…
In fact, doctor’s mistakes are the 4th leading reason for deaths each year in the US…
And legal prescription drug side effects are the #1 cause of deaths each year in the US…
Google it.
With that said, look into Devil’s Claw to kick your cancer in the ass.
There are no known side effects, it’s insanely cheap and according to this government study, Devil’s Claw can regress your issue almost immediately:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2722058/
Just try it. If it does not work, then go with what your doctor recommends.
I am certain after taking Devil’s Claw, you are going to write a followup post telling us of your recovery the natural way. I am certain of it.
AJ Kohn // October 10th 2014
Thanks Markus. I may look at supplements to help along with traditional treatment. But I’ve seen the scans and because of some issues with the birth of my daughter I know how to read them. No doubt there’s some ugly stuff in there and luckily I’m in an area with world class hospitals and doctors.
Leo Golan // October 10th 2014
Hey, a lot of wishes for you!!!!
AJ Kohn // October 10th 2014
Thanks Leo.
Sebastian Socha // October 10th 2014
I wish you all the best AJ.
After having read this post, I feel you have the right mindset to take on the fight!
Good luck,
Sebastian
AJ Kohn // October 10th 2014
Thanks Sebastian. I’m going to stay strong mentally and physically. No shortcuts in this fight.
Ammon Johns // October 10th 2014
Just over 20 years now of IBS, fissures, and all the other delights that can be complications. They still have no idea on the cause of mine, so who knows what joyful discovery is yet to come.
All my thoughts are with you, but in a strange way, I bet you are glad to have a genuine diagnosis of some kind rather than the ongoing uncertainty and just knowing *something* is wrong that they aren’t spotting, and thus aren’t treating.
AJ Kohn // October 10th 2014
Sorry to hear Ammon. I can’t imagine it going on for that long. Shit, a little over a year has been no fun and the ‘if I eat this will it hurt’ gets really, REALLY old. And that’s doubly bad because I’m a foodie. Can’t very well go out to a fancy restaurant and then think it’s a minefield for your intestines.
And yes, while I didn’t wish to have FL (funny how you adopt new acronyms so quickly) I’m glad I know what it is and that there’s a way to tackle it. The unknown is, for me, and I can sense probably for you, worse then knowing what you’re up against.
Be well yourself and I appreciate your thoughts.
Jeff Sauer // October 10th 2014
You are going to kick cancers ass! Your positive attitude, thoughts and family will keep you going through the hard times. It’s a long road to recovery, but you will come out stronger in the end.
AJ Kohn // October 10th 2014
Thanks Jeff. I do have a great support system – greater than I imagined in fact. Harder, Better, Faster, Stronger.
Dave Rekuc // October 10th 2014
AJ,
I’m sorry to hear about your illness, but glad to hear you’ve stayed positive.
When I was 21, I came down with Aplastic Anemia and Non-viral hepatitis at the same time. I spent 3 months in hospitals and lost 80 lbs before even being diagnosed correctly, then spent a year and a half in and out of them with chemos, immuno-suppressive treatments and ultimately a bone marrow transplant.
For the past 5 years I’ve lived medication free and with only the slightest of hints that my life was any different than normal, despite changing my body’s blood type. Here’s a few things I learned in the process:
– You can only control a few things in extraordinary circumstances like this. And, the medical timeline is not one of them. Focus on what you can control, it’s quite helpful mentally.
– Friends and family always want to help, but almost never know how. Let them help you, even if it’s just to play a game or watch a movie and escape for a little while.
– Time crawls during hardships and flies in good times. You’ll be back to time flying soon. Kick it’s ass, AJ. Keep blogging and keep doing what you love.
AJ Kohn // October 10th 2014
Wow Dave, that’s a really inspirational story. That’s a lot to go through and so great to hear that you’re medication free for five years. I really appreciate you sharing your experience and advice.
JP McD // October 10th 2014
I had non-Hodgkins lymphoma back in 1991-1992. Did the whole chemo/radiation treatment series but it came back. I had an “experimental” bone marrow transplant in 1992 that had a 20% success rate at the time. Cancer free since 1992. Email me if you want to hear more about it. Keep a positive attitude and roll with the punches. And watch some funny movies so you laugh more. God Bless you on your journey back to good health.
AJ Kohn // October 10th 2014
Wow JP! That’s absolutely amazing. Cancer free for 22+ years! Just … yes! Thank you for that and I might take you up on your offer to hear more down the road. Thanks so much for sharing your experience. It helps quite a bit.
Rodrigo de Alday // October 10th 2014
Don AJ…. I will send you constant good vibes from here my friend…. let’s kick cancers ass!
AJ Kohn // October 10th 2014
Thank you Rodrigo! I really appreciate those good vibes south of the border. It’ll certainly help me kick cancer’s ass.
Ricardo Rodrigues // October 10th 2014
Hello warrior,
I’m a new fan of your blog posts.
And from what I learned from you leads me to think that a lymphoma for you is just another post.
Lymphoma does not mean death means fight, and you know how to fight.
So what are you waiting for !?
I hope you get better, for you, for your family and for us blog readers.
Accept my best regards
AJ Kohn // October 10th 2014
Always great to have a new fan! Thank you Ricardo. And yes, this is just another obstacle. But one that I’ll get past. Just sizing up its weak spots right now before I crush it 🙂
Modestos Siotos // October 10th 2014
Not what I was expecting to come across in your awesome blog but by far the most powerful post I have read in a long time.
It takes guts to publicly share how you deal with a health condition but you definitely have a plan and a positive attitude. No doubt you will beat it!
AJ Kohn // October 10th 2014
Thanks Modestos. I’ll let others ascribe ‘guts’ and ‘bravery’ to what I’m doing. I just know this is how I deal with it. Writing is good for me and I don’t want secrets to fill my life for the next 6 months. But I love your certainty in the outcome, that does help.
John Biundo // October 10th 2014
AJ,
I’m one of the lurkers. I want you to know that I literally smile when Feedly informs me there’s a new AJ Kohn post to read. Yay – more wit, wisdom and practical knowledge coming my way! I always feel like I should give back, but never manage to find the time.
I was stunned, then immediately enthralled with your narrative. I have no doubt you’re going to kick this thing to the curb and come back stronger. I don’t even think it’s going to be a fair fight.
As someone who’s unfortunately intimately familiar with the John Muir emergency room (2 trips in the last 3 years – my poor wife!), one thing I do know is that you’re in world class hands.
Strange that it took reading probably your 100th article to realize we are neighbors. I’d be honored to help in any way I can if the need arises. I’m literally right down the street. And if not, I’d love to meet you at Peet’s on main street some morning and buy you a mocha latte.
All the best, and all the power thoughts I can find arrowing your way now. Go Giants, and Go AJ!
John
AJ Kohn // October 10th 2014
John,
Great to know I have someone super local! And yes, John Muir is an amazing place and if need be I can always swing into the city to go to UCSF. We’ll see if that’s necessary or not but I’m lucky to have the ability and resources to do so. I know others who might be in an area that doesn’t have such great healthcare might need to travel further. So for that I’m very thankful.
Catching up sometime at Peet’s sounds good when I’m up for it. In the mean time I hope your wife is doing well and I thank you for your thoughts.
B // October 10th 2014
Hey AJ, I’ve always respected your insights on this blog. I did want to mention to you new research that I’ve been interested in that might benefit you. See http://www.sciencedaily.com/releases/2014/06/140605141507.htm. The study does have some critics, but there’s no harm in fasting and I’ve started doing it even though I’m in relatively good health. I hope it’s useful for you.
AJ Kohn // October 10th 2014
Thanks Brett. I’m not sure it’s right for me right now but I’m always willing to look and investigate. The more arrows I have in this fight the better.
Victor Pan // October 10th 2014
Internet thoughts being sent over on Taiwan’s independence day…
Here’s a link to help you fight the good fight: http://www.patientslikeme.com/conditions/244-follicular-lymphoma
If you’d like to unsubscribe from future links, let me know 😉
AJ Kohn // October 10th 2014
Thanks Victor. And links are just fine. In fact, I’m familiar with Patients Like Me because of the work I did at Caring.com.
Charles J. // October 10th 2014
I will be keeping you in my positive thoughts AJ. Great attitude and I believe that you will beat this. All the best.
AJ Kohn // October 10th 2014
Thank you Charles. The more who believe the better!
Adam Sherk // October 10th 2014
Thinking good thoughts for you AJ. Kick its ass!
AJ Kohn // October 10th 2014
Thank you Adam!
Dr. Pete // October 10th 2014
Just saw the news via Facebook. Hoping for all the best for you, AJ. Too many cases of cancer popping up among industry friends, but also many, many victories over it.
AJ Kohn // October 10th 2014
Thanks Pete. Yeah, too many cases for sure. But I appreciate your support and encouragement as I prevail over this ugly thing.
Jon Tavarez // October 10th 2014
Good luck man! Stay strong.
AJ Kohn // October 10th 2014
Thanks Jon!
Carlos Fernandes // October 10th 2014
Sending you magical thoughts of strength, love and happiness AJ.
I know you’ve got this AJ – but also know there’s a gang of us here for you whenever you need to help you give it a whooping too.
AJ Kohn // October 10th 2014
Thank you so much Carlos. It is very comforting, very … just … incredible to have this outpouring. It means so much and I deeply appreciate it all.
Paul Pritchard // October 10th 2014
Love your spirit, AJ. Wishing you all the best.
AJ Kohn // October 11th 2014
Thanks so much Paul. Great to hear from you.
Richard Baxter // October 11th 2014
Fight buddy, fight.
AJ Kohn // October 11th 2014
I will Richard. I know kung fu.
Sara Mannix // October 11th 2014
Sending magical thoughts your way.
AJ Kohn // October 11th 2014
Thank you Sara. The more magical thinking the better!
Dennis Seymour // October 11th 2014
We have never met nor talked but I feel like I’ve known you for a long time as I practically see you everyday on Google+ and I’ve been on this blog for a while already…
Weird as that may sound, good luck and we look forward to seeing you beat this and you’ll probably post about it, too! And we will be here and celebrate with you.
All the best AJ
AJ Kohn // October 11th 2014
The Internet does strange things with relationships Dennis. And the outpouring of support and encouragement from people I have only met online is astounding. So I thank you for your kind words and look forward to celebrating with everyone soon.
Bill // October 11th 2014
Keep us posted on your PROGRESS. Your story has me thinking…
AJ Kohn // October 11th 2014
I’ll try Bill. Whether it’s here or somewhere else I don’t know.
Dana Tan // October 11th 2014
AJ, Thank you for sharing this with us. Just a little over a week ago in our weekly team meeting at SEER San Diego we were talking about this post of yours: https://blindfiveyearold.com/crawl-optimization
It’s definitely one of my all time favorites. Because of that post I learned how to parse server logs. I’ve come to your blog so many times and always left armed with some amazing ideas and always learned something. You have given me so much.
This time, I will give you something. I know you are a scientist, and may not believe in the power of prayer the way I do…but if you want to think of it as positive particles it’s certainly ok by me! I am an Episcopalian and Episcopalians have a specific prayer for everything. Here is one I borrowed and modified in a prayer a said for you:
This is another day, O Lord. I know not what it will bring forth, but make AJ ready for whatever it may be. If he is to stand up, help him to stand bravely. If he is to sit still, help him to sit quietly. If he is to lie low, help him to do it patiently. And if he is to do nothing, let him do it gallantly. Make these words more than words, and give him the Spirit to conquer today in anticipation of many amazing decades yet to come. Amen!
AJ Kohn // October 11th 2014
Thank you for the very kind words Dana. While I’m not big on prayer myself I am thrilled when others include me in their prayers since it’s their way of directing that energy to me.
And your modified prayer is really … very touching. Many many thanks.
Jeremy Post // October 11th 2014
AJ, if anyone can kick cancer’s ass, it’s you. Looking forward to many more years of friendship.
AJ Kohn // October 11th 2014
Count on it Jeremy!
Ray // October 11th 2014
AJ, though I’m only one of probably thousands of your blog subscribers, the power of social media is that through content and a hundred touch points, we feel invested in people we choose to have in our networks. So it is with you.
That you can write such a detailed (and entertaining) journal while experiencing what must feel like being inside emotion blender, speaks to the support system you have and the importance you place on the people who follow you.
I empathize with your situation and am inspired by your spirit.
Wish all the very best as we wait for your quick and full recovery.
AJ Kohn // October 11th 2014
Ray,
It’s powerful to know that what I’ve written and how I’ve conducted myself has … earned your investment as well as others. I’m very thankful for that investment and the outpouring of support. Thank you.
Mark Wilson // October 11th 2014
You have come here to chew bubblegum and kick ass. And you’re all out of bubblegum.
You’ve got this. There’s plenty of time to chew bubblegum. Let the ass kicking commence. Sending positive vibes your way.
AJ Kohn // October 11th 2014
Exactly! Thanks for the great reference and vibes Mark.
Corey Dilley // October 11th 2014
AJ, really sad to hear the bad news. The one time we met, you were very generous and helpful. Let me know if there’s anything I can do to return the favour.
Kick cancer’s ass. Everyone you’ve helped is rooting for you. Judging by the number of comments, you’ve got a lot supporters in your corner.
AJ Kohn // October 11th 2014
Thanks Corey. I’ll let you know if I need that favour and very much appreciate your support. It’s been incredible to see how many have come out to root me on. Of course I figured some would but this has been … tremendous.
Travis Wright // October 11th 2014
You got this, AJ! You will kick it’s ass. No doubt.
I’m sending over good vibes, man!
AJ Kohn // October 12th 2014
Thank you Travis. Certainty and good vibes are greatly appreciated!
Peter Kohn // October 11th 2014
AJ,
We are all pulling for you and look forward to the ass-kicking.
This cancer will surely pay for its indolence!
Love,
Peter, Alex, Graham and Ian
AJ Kohn // October 12th 2014
Thank so much Peter. And yes, this cancer will pay dearly for its laziness!
Brandon Doyle // October 12th 2014
I have never met you, but I read your stuff all the time. I learn from you, and look up to you. I wish you the best in your fight. You’ll be in my thoughts and prayers. Good luck!
AJ Kohn // October 12th 2014
Thank you for the kind words and for keeping me in your thoughts and prayers Brandon. It’s very much appreciated!
Miguel // October 13th 2014
Incredible reaction, AJ. Stay awesome. We’re here with you.
AJ Kohn // October 13th 2014
Thanks so much Miguel!
Tise // October 13th 2014
Best of luck to you man, fight it with all you’ve got!
AJ Kohn // October 13th 2014
Thank you Tise. I’ll be giving 1003%!
Karan Rajput // October 13th 2014
Prayer for you.. Best of luck.
AJ Kohn // October 13th 2014
Thanks Karan.
Simon // October 13th 2014
I wish you all the luck in the world AJ. Such a post causes some introspect. As a 50 year old who has smoked for over 30 years…Hmmm…time for a change perhaps?
AJ Kohn // October 13th 2014
Thanks Simon. And a change might do you good. For me it was just luck of the draw 🙁
Ryan // October 13th 2014
AJ, I’m so very sorry to hear about this. You will be in my prayers.
AJ Kohn // October 14th 2014
Thanks Ryan. I really appreciate that.
Larry Kim // October 14th 2014
woah. sorry to hear AJ.
hope your treatment goes without too much side effects.
AJ Kohn // October 14th 2014
Thanks Larry. I hope so too but … even if it does it’ll be okay. Slaying dragons probably won’t come without a few bumps and bruises 🙂
Florian // October 15th 2014
Sad to hear that 🙁 Get well soon!
AJ Kohn // October 15th 2014
Thanks Florian and I will!
Bonnie Gibbons // October 15th 2014
I’m very sorry this has happened, but it sounds like this disease picked a pretty stubborn target this time. Hoping for the treatment to be as tolerable as possible.
AJ Kohn // October 15th 2014
Thank you very much Bonnie. It did pick the wrong guy to pick a fight with and hopefully the treatment isn’t too bad. Even if it is tough, I’ll get through it.
Matt Storms // October 15th 2014
As I told my buddy who is fighting Liver Cancer right now to suck it up and don’t be a bee’yotch. Harden up and fight on.
AJ Kohn // October 15th 2014
Thanks Matt though I don’t need that type of pep-talk. I’ve got this and it’s the lymphoma that better be shaking in its shoes.
Terry Whalen // October 15th 2014
I like Bonnie’s sentiment. I’m sending good thoughts, AJ.
AJ Kohn // October 16th 2014
Thanks Terry. I’ll take all of them that I can get!
Eric Wu // October 16th 2014
AJ, You’ve always had my respect as an intellectual in many regards beyond just your genius as a “marketer / product manager”. Your transparency, vulnerability, and more your fighting spirit are inspiring.
I’ll be sending positive thoughts and wishes for you and your family in this trying time.
Keep kicking in ass in all aspects of your life … those who are watching are routing for you! 🙂
p.s. We all need help sometimes. So if there’s anything I could ever do to help, please let me know.
AJ Kohn // October 17th 2014
Eric,
Thank you for the very kind words. I could say much the same for you. I really appreciate the thoughts and wishes and will reach out should I ever need anything.
Erica McGillivray // October 18th 2014
Sending the best of thoughts and love. Good wishes for all the healing.
AJ Kohn // October 19th 2014
Thanks so much Erica.
Debra Mastaler // October 20th 2014
Whenever I hit a bump in the road, I think of this:
“Circumstances will never make me betray my plans for happiness”.
Seems appropriate here 🙂 I sincerely wish you all the best!!
AJ Kohn // October 21st 2014
Thanks Debra and that’s a great quote!
Rick Bucich // October 21st 2014
I’m re-commenting because my own situation changed right after I left a comment on the 9th.
My birthday was on the 10th and on the 15th I went to see a dermatologist regarding a routine case of eczema that I’ve had for the last 10 years or so that seemed to be getting worse.
Literally, withing the first minute of seeming the doctor he used the word “biopsy.” Seems my eczema had been mis-diagnosed by a prior dermatologist despite my high risk group (fair skin/red hair) so it had been left un-treated for an extended period of time.
Turns out I have three cases of basal cell carcinoma (mild non-melanoma skin cancer) which could have become more severe had they not been caught. The largest case will require outpatient surgery which will leave a nasty scar which I’m more than happy to accept in lieu of the alternative.
Tough lesson to learn, by not questioning the first diagnosis I potentially put my life at risk. I’ll be “cured” in a few weeks but days of being in the sun without effective all-over protection are completely over whether I like it or not.
I got lucky that it was caught before it could get worse. Go get that funky-whatever checked out properly.
AJ Kohn // November 02nd 2014
Rick,
I’m glad you posted this comment here. We’ve chatted privately on G+ about all this but I think it is important that people get whatever they think is strange checked out. Don’t be the person who thinks it’s probably nothing and have it turn out to be something. And trust your gut and speak up when you want the doctor to do more tests or check something.
Justin MacDonald // November 01st 2014
I know you will bounce back A.J..
I have a family member who is going through a similar situation, in my experience you have to just stay positive. Laugh a lot, be around people you love, and keep your mind active. Of course, you are already doing that, so that Lymphoma is screwed :).
Also, I just want to say your blog is amazing. I’ve never commented before, but I read every post and you are always trying your best to help others be successful. I know that you have helped me out a bunch, thank you!
AJ Kohn // November 02nd 2014
Thanks so much Justin for the support and the very kind words. I hope your relative is doing well. I’m definitely staying positive and am looking forward to getting treatment underway on Thursday (11/6).
Stephan Spencer // November 01st 2014
AJ, I’m late to the game here, but I wanted to offer you my words of support too, albeit a little tardy. Sending prayers your way…
AJ Kohn // November 02nd 2014
Thanks Stephan and there’s no bad time to offer support!
Ashley McNamara // November 17th 2014
Longtime reader and first-time commenter — sending prayers and positive thoughts your way!
AJ Kohn // November 22nd 2014
Thank you so much Ashley. I really appreciate it.
h0lybyte // November 18th 2014
I hope you feel better!
Mick Kennys // November 18th 2014
Cancer survivor here! This post was written more than a month ago. I hope that everything is all right with you? How your fight is going?
XOX!
AJ Kohn // November 22nd 2014
Mick,
Great to hear from another cancer survivor! I’ve begun treatment which consists of chemo (Rituximab + Bendamustine) every month for 5 or 6 months. The first round went well but I wound up having side-effects. Obviously you have the fatigue and nausea which weren’t too bad with the emetics I could take.
But it turns out my veins didn’t like the Bendamustine and I developed some blood clots in my right arm. So now I’m on blood thinners and I’m getting a port put in so the next infusion will go directly into a larger vein.
I also spiked a fever (102) and rash which sent me to the ER. It turned out to be a reaction to the antibiotics I was taking so I’ve swapped the one I was taking for another for the time being.
Overall I actually feel pretty damn good. In fact, I have no stomach pain at all which turns out to be a change from before. I think the gradual onset made it difficult for me to realize how much chronic pain I was in at the time. So I’m very happy with that.
But the fatigue is real. It’s not ‘getting tired’ it’s more like ‘this body is now going into sleep mode in 15 minutes’. So sometimes I just zonk. Staying up late just isn’t in the cards. And the side effects are a bit of a bummer but it’s more about the amount of time it’s taken that is really frustrating.
Between the time soaked up by the side effects and the regular appointments and being fatigued there’s just not a ton of extra time. Nevertheless, I was locking up downstairs one night and thought about how lucky I and my family was. It’s something I would have said before I was diagnosed and I was happy that the thought popped into my head again even after I’d been diagnosed and gone through one round of treatment.
Neil Desai // November 24th 2014
Sorry to hear about your condition. Wishing you the fastest recovery.
AJ Kohn // November 25th 2014
Thanks Neil!
Steve // November 30th 2014
AJ,
Bravo!!
Salute to your spirits.
Prayers, Love and Waiting to read many more posts..
Keep it up
AJ Kohn // December 04th 2014
Thanks so much Steve!
Suzanne Lanning // December 15th 2014
Hello AJ,
I hope you recover as soon as possible. U r an inspirational hero and know this you arent alone in this fight. God bless you!!! Sending prayers your way… Love..
AJ Kohn // December 16th 2014
Thanks Suzanne! I really appreciate your prayers and do hope that being open about it might, in some small way, help others.
ashish // April 27th 2015
Stay strong. God bless
Susie Patrick // June 18th 2015
I am very sad to read this….I will pray for you AJ KOHN
Albert // July 26th 2015
Sending my thoughts, prayers and strength to you AJ.
Farooq Marwat // October 17th 2015
My prayers are with you AJ.
Hope you’ll be alright soon, or may already be enjoying a healthy life
Ashish // February 05th 2016
hello,
Get well soon AJ
God Bless you
Melita Fernandez // July 07th 2017
Hello AJ,
I hope you recovered well. Have a great future ahead.
Nimi // July 12th 2017
Hi AJ,
Really inspiring. Hope you are alright now. How is your health?
AJ Kohn // July 13th 2017
Thanks Nimi. Health is great. Cancer free for more than 2 years now.
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