OT: "I Never Thought It Would Happen To Me"

[Uncle Jam's Army]

"I never thought it would happen to me." A common refrain from many people afflicted with the disease of cancer. Well, it was my turn to repeat that phrase earlier this week when I received the diagnosis of chronic lymphocytic leukemia.

Between December 23, 2015 and today, I've ridden once, and that was a 15 mile ride that took me 75 minutes to negotiate. Prior to that, I was riding probably the best of my life, ably assisted by great training programs put together for me by our very own Joachim. But serious inflammation and joint pain, along with cold chills (I usually tolerate cold very well, as I run very hot), followed by inflamed lymph nodes led me to seek several medical opinions (don't get me started on that bureaucratic HMO nightmare), which led to the diagnosis. I'll learn the staging tomorrow, but from what I've read, I'm anywhere from 2-4 on the Rai scale.

Though there is no apparent cure for my disease, my goal is to maximize my time with my family. And though I can't ride right now, I hope to get back on the bike for some rides with family and friends, including forumites I have met as well as those that I have not. This community has always treated me well, and I have made many great friends here. For that I am grateful.

[drewellison]

Sending prayers for healing and peace.
Drew

[gemship]

Go easy forumite and I hope for you to have the best of health going forward and make some dreams/bucklist/time with family and friends all come true.

[ERK55]

Hi Robert.
Late last summer I purchased a Carl Strong bike from you.
Many times I've meant to send a message that it fits and rides great.
I think I'll feel maybe a little differently (lucky) riding that bike now.
Wishing you all the best.
Gene

[verbs4us]

Thyroid cancer survivor here, going on year 38. Relish every ride, every rolling moment of reinvention. Eat well, rest well, love well.

[ColnagoFan]

Your post physically impacted me. Although we've never met, yours was always one of the names I could count on for a post that added to the conversation, whatever the topic.
My heart aches for you and your family, I know the impact and toll that this can take on everyone, and know that all of us are here for whatever you need. Whatever we can offer through the little screen that frames our interactions, any advice any solace any jokes or any just inane bike talk (did you hear about the new BB standard??), we are here.

You will be in my thoughts on my next ride.

[Steve in SLO]

Wow. Very sorry to hear. My best to you and your health.

[crankles]

Fight it. Fight hard. I work in oncology (pharma). There are effective treatments coming. As an athlete, if chemo is the best option, you'll be in better shape to ride it out.

ps. anyone with Walken as their avatar has the right kind of attitude.

You are not alone.

[Tickdoc]

Wow. Not the news you want to hear for sure. Prayers and good healing vibes sent your way and best of luck through your treatment and healing.

[ofcounsel]

You're in my thoughts. Rest, and fight.

[majorpat]

You have been a great contributor to this forum and a longtime member. You don't walk alone, friend.

Sent from my LG-V410 using Tapatalk

[dustyrider]

Positivity is powerful.

No matter what happens with your battle, I hope you will find quantity and quality in the days ahead.

It would be great to see updates on the forum, but I know time takes on a new meaning right about now. Spring is coming, and we won't be shouting so much as we start to see more awesome bicycle stuff! Hopefully a post or two from you.


I just went through something like this with my father.
If you'd like to talk, drop me a line,
David

[beeatnik]

Impossible not to be touched by this disease. Grandfather diagnosed with lung cancer at 52, Mom when she was 43 (fibrosarcoma), brother at 25 (Hodgkin's) and Catella founder and good friend (Hodgkin's) late 20s.

These are the most personal connections but there have been many friends who have lost parents to liver cancer and breast cancer.

If there's anything I can do (as someone who has spent at least 1000 days on cancer floors), please reach out. Either way, I think you have a positive attitude and outside of chemo and radiation that's the only part of the fight you can control. You can beat this. My thoughts and prayers are with you and your family.

[texbike]

Wow! Sorry to hear about your diagnosis! :(

Good luck with your treatments and may you have MANY enjoyable miles with your family and friends!!!

Texbike

[Matthew]

So, so sorry. Please hang in there and fight like hell. The paceline army is behind you wishing you the best. Matthew

[CNY rider]

There has been incredible progress made in the treatment of CLL in the last 10 years.
There are in fact some people in long term follow up in clinical trials that appear to have been cured of the disease.
And new therapies introduced in the last few years are easy to take and to tolerate, and incredibly effective.
So keep your chin up and focus on the positive at your appointment tomorrow.

[makoti]

Jeez. I have two sisters & a good friend who have been fighting with this damn crap for 30+ years. I'm afraid all I have is to wish you the best. Now's when your family and friends close ranks around you. Let them help when you need it, tell them to give you space when you need that. Fingers crossed that the staging comes back a 2 or even less.

[Matt-H]

Stay positive! Wishing you all the best and keeping you in my thoughts and prayers!

[jchasse]

So sorry to hear that...all the positive vibes I've got right now are headed your way.

If you find yourself in Southwest Colorado I'd be honored to head out and ride bikes with you, and add a new forumite to the list of those you know.

[bikingshearer]

Well, sh*t. I am so sorry to hear this. If good wishes can beat this, you can have as many of them from me as you want. I am sending a whole bunch your way now.

I will offer some unasked-for advice coming from the perspective of dealing with others close to me with cancer diagnoses and other life-altering events.

There are parts of this journey that you must walk alone, and others that only you and your family and very close friends can walk together. But there are a ton of things that you let someone else handle for you if you don't want to them. Friends will want to help. Let them. Let them do the things someone else can do and you can't or just don't want to do. The goodness of people in rough times can be an incredibly powerful gift. But you allowing them to show their love and caring is giving them a wonderful, powerful gift, too.

But do not feel under any obligation whatsoever to think up stuff for someone else to do so they can feel useful. At this point, your obligations are to yourself and your family - period. If it is not a good time to talk or for people to visit or for someone to drop off dinner, turn them away. Gently if possibly, firmly if necessary. Some folks are just energy-sucks, however well-intentioned they may be. Please do not waste precious time or energy letting someone work through their crap via your illness. Unless, of course, doing so gives you pleasure. If so, knock yourself out.

You no doubt have heard complaints about people who think "it's all about me." Well, this is all about you. Okay, your family, too, but mostly you. Good luck. We've got you in our draft for as long as you want it. Tailwinds, friend.

[Cornfed]

Stay positive and strong. My thoughts and prayers w you.

[MattTuck]

I appreciate your attitude, but don't give up without a fight. Take advantage of every moment, and live your life on your terms.

I'll be pulling for you and hoping for the best. Sending all my empathy, compassion and positive energy to you and your family.

[velotrack]

Sorry to hear this. You aren't alone in your fight - please let us know if there's anything we can do for you.

[shovelhd]

Fight hard, my friend. Your bike misses you.

[ceolwulf]

I lost both my parents to cancer, far too young ... hate it more than I can say.

Stay strong and fight hard.

[stephenmarklay]

Don’t just give up. Cancer treatments are evolving so fast. One approach I have heard about lately is much lower does chemo treatments.

The idea is not to try and get rid of the cancer but to keep it at a level that can me managed while allowing your body to keep up the fight.

Keep your head up.

[moose8]

Sorry to hear that. Life sure can give some gut punches sometimes. Lots of people here will be sending out positive thoughts for you.

[54ny77]

UJA, PM'd you. :)

You're gonna beat this, and we're gonna cruise the bike path to Santiago in celebration.

Mark it on your calendar please.

Godspeed.

[Uncle Jam's Army]

Thank you so much, my friends. It is difficult not to be moved to tears by each response.

Breaking the news to people face to face has been difficult, my wife is having a difficult time coping, but she's starting to rally. And we still haven't told my two boys or my mom. That happens tomorrow, after we know staging. I still don't know how I'm going to do that.

[jmeloy]

All positive thoughts UJA. As stated several times above you've been a very posture voice here. You can beat this.

[stephenmarklay]

Thank you so much, my friends. It is difficult not to be moved to tears by each response.

Breaking the news to people face to face has been difficult, my wife is having a difficult time coping, but she's starting to rally. And we still haven't told my two boys or my mom. That happens tomorrow, after we know staging. I still don't know how I'm going to do that.

Repeat this everyday. This is just a situation. I am not the disease. I am better than that.

My company’s CEOs son had cancer and his wife wrote this little book. I am a believer in faith. I am not religious but I have faith in the power of the mind.

You can over come this. Watch this little clip for starters

https://vimeo.com/147639335

[eBAUMANN]

sorry to see this news robert, was hoping it would be less serious than it sounded in your last message...hoping some (relative) good news comes your way tomorrow, you and your fam will be in my thoughts.

[572cv]

As others have said, you have shared honesty intelligence and empathy with us, and we value you as a forumite and a person. May you have the strength, fortitude and every break possible in beating this. Best to you and your family. We may not be Uncle Jam's Army, but we are at least a platoon!

[AngryScientist]

Robert - your post has stirred up some emotions I have put aside for some years. I don't know what to say really, but I'm touched that you shared this news with us here. I do believe in the power of a positive outlook, and I also do believe that cyclists, in particular are set up to fight this type of fight first class. We know how to suffer, we know how to grow stronger out of suffering. We know how to make suffering work for us. You'll beat this one, I'm pulling for you.

[Cicli]

I am sorry for this. I will think of you. Fight hard.

Stoke the fires of paradise.
With coals from hell to start.
-Jerry Garcia

You can win.

[Louis]

Best of luck fighting this, Robert. Obviously this isn't about "luck" but strength and determination, but that's how the saying goes.

Let us know what the stage is, but whatever it is, we'll be rooting for you.

[sjbraun]

I know your pain. I've had CLL for 10 years. While CLL is a highly variable disease, MANY of us do really well. I'm seven years post chemo and live a totally normal life, work full time and ride 6k miles a year. I get that a new diagnosis feels like a death sentence, but I'm proof that CLL is a cancer you can live with. PM me if you'd like to chat, I'd be happy to share my experience or lend a knowing ear.

-Steve

[zmudshark]

I am not good with words, but this is good advice. I am also not a spiritual person, but I do believe we are all part of something, and sometimes that helps. You have a lot of positive energy directed in your direction. Nothing is impossible.

Well, sh*t. I am so sorry to hear this. If good wishes can beat this, you can have as many of them from me as you want. I am sending a whole bunch your way now.

I will offer some unasked-for advice coming from the perspective of dealing with others close to me with cancer diagnoses and other life-altering events.

There are parts of this journey that you must walk alone, and others that only you and your family and very close friends can walk together. But there are a ton of things that you let someone else handle for you if you don't want to them. Friends will want to help. Let them. Let them do the things someone else can do and you can't or just don't want to do. The goodness of people in rough times can be an incredibly powerful gift. But you allowing them to show their love and caring is giving them a wonderful, powerful gift, too.

But do not feel under any obligation whatsoever to think up stuff for someone else to do so they can feel useful. At this point, your obligations are to yourself and your family - period. If it is not a good time to talk or for people to visit or for someone to drop off dinner, turn them away. Gently if possibly, firmly if necessary. Some folks are just energy-sucks, however well-intentioned they may be. Please do not waste precious time or energy letting someone work through their crap via your illness. Unless, of course, doing so gives you pleasure. If so, knock yourself out.

You no doubt have heard complaints about people who think "it's all about me." Well, this is all about you. Okay, your family, too, but mostly you. Good luck. We've got you in our draft for as long as you want it. Tailwinds, friend.

[Corso]

It truly can happen to any of us.

My best wishes, prayers and positive thoughts to you and your family.

Beat this motherF**c*ker!

[AJM100]

CLL is not an aggressive cancer. My father has it. He was diagnosed nearly 12 years ago and only began treatment this past winter. While it cannot be cured, there are a multitude of effective treatment's available - partial and total recovery is not uncommon. Non-chemo based treatments are available. My father is 86 years old and the treatment he just received was a monoclonal antibody treatment administered 1x week for 4 weeks and it lead to very good results.

Don't fret, be strong, get a good hematologist that will not necessarily rush to treat if your lab work and symptoms are manageable.

Thoughts and prayers are with you and your family. Best of luck.

[azrider]

Fight like hell man.........thoughts and prayers to you

[teleguy57]

Great to see so many posts so quickly. This forum has the character is does because it's comprised of people like you, UJA. You've been helpful, funny, insightful and inspirational.

Adding my voice to this chorus wishing you the best and supporting you with thoughts and prayers. And I'm betting that you will continue to be inspirational to us -- as well as all those other things.

[bcroslin]

So sorry to read this news. Hang in there.

[eddief]

On the good side, there is some truly truly amazing (sometimes scary) stuff going on in pharma / biotech. I do not understand it for the most part, but am encouraged by this new tech called CRISPR. Sounds like word processing with genome chemicals:

http://www.wired.com/2015/07/crispr-dna-editing-2/

One of the inventors does her work at UC Berkeley and has founded at least one private company doing this work:

http://cariboubio.com/

American Jennifer Doudna and French-born Emmanuelle Charpentier co-authored a key study published in August 2012 that demonstrated the technical power of Crispr-Cas9 to cut and splice genes with extreme efficiency at the highest resolution possible. In 2012 and 2013, CRISPR was a runner-up in Science Magazine's Breakthrough of the Year award. In 2015, it was the winner of that award.[136]

My thoughts are with you during this tough time.

[William]

Hang in there, one day at a time, step by step, keeping a positive outlook and the willingness to fight the fight. We value the contributions, friendship, and advice you have shared with us over the years and we will be pulling for you in every step you take.

Positive thoughts and prayers coming your way.

Now, kick some A! :)






William

[jimcav]

take the time to find an oncologist you trust
we are all being positive on low staging, but regardless as others point out the advances are real--stay positive

[sitzmark]

Looking forward to your next post about being on the bike - it will come in due time.

Until then, this is about you and your family. Live everyday on your terms and find the strength to stay positive and defiant. Stay informed and don't hesitate to participate in the many decisions to come with your therapy and challenge your medical teams to leave no stones unturned when looking for solutions.

A friend just traveled down this road and he's now in remission - cantankerous fart he was ... never accepted no for an answer. I know you'll do the same.

Nothing but positive thoughts being sent your way.

[david]

I'm so sorry for you and hope for a full and speedy recovery.
You'll be in our thoughts.

[DRZRM]

Wow Robert, that was tough to read, I'm so sorry, my father had lymphocytic leukemia, though it was mis/un-diagnosed until he was very sick. I hope your news is positive.

Stay strong through your struggle. The very best to you and your family.

[giverdada]

ho. lee. f**k.

i'm sorry man. that news is no good, and i don't really know you, but you had a Strong and i have a Strong and you're a good guy on a good bike and..crap.

i agree with matt tuck : great to be grateful for life you got; do not go gentle into that 'good' night. rage against the dying of the light.

good community here, and widely-versed in so many things, from so many sides, it's good to put your situation out there into the prayers or consciousness or general hope of the folks here. i wish you strength and goodness.

nick.

[CSTRider]

Thank you for sharing at this most difficult time - you are now in our collective thoughts and prayers. We are pulling for you and your family. You have also inspired me to more fully appreciate each day, and focus on the stuff that really matters. Stay strong - we are here to listen and support you.

[JamesEsq]

Wow, that's sobering news when I was just skimming the Epresso Machine thread--it puts things in perspective. My wife had a double mastectomy, but she beat cancer. Best wishes to you.

[doomridesout]

I'm sending good vibes your way... I don't know you, but take some positive energy from me anyway.

[rwsaunders]

Nothing but great thoughts and good karma coming your way.

[Caballero]

I'm so very very sorry to be reading and replying to such a post. I hope you'll take strength in the thought that so many are pulling for you.

Take the time to experience the range of emotions, be there for your family especially your boys as they will be for you.
We're all hoping for the best outcome tomorrow. You can beat this

[velotel]

Nothing I can say that hasn't already been said. The worst has to be telling the family, can't imagine that. Take care, I've always immediately looked to see what you had to say when I saw your forum name pop up. If all else fails, you can always grab a glass and a touch of good single malt and watch the sun rise or sink. An act that always seems to touch the soul. The sun that is, the scotch is just an accessory to the act.

[velomonkey]

I am very sad to read this UJA. My thoughts are with you and I care.

[2wheelwill]

Time to get into the drops, put your head down and fight like hell. I don't know you but my thoughts and prayers are with you.


Sent from my iPhone using Tapatalk

[PoppaWheelie]

Hey Robert - I had no idea this news was lurking inside this thread. I'm really sorry to hear about it and of course will be sending you good vibes. Hoping for the best as you learn more.

Bryan

[thwart]

Not much to add what others have so ably said.

The positive attitude that comes across in your posts here will undoubtably help you in the struggle. Wishing you all the best.

[David Kirk]

Sending all the best possible thoughts. Be strong and be well.

dave

[oldpotatoe]

"I never thought it would happen to me." A common refrain from many people afflicted with the disease of cancer. Well, it was my turn to repeat that phrase earlier this week when I received the diagnosis of chronic lymphocytic leukemia.

Between December 23, 2015 and today, I've ridden once, and that was a 15 mile ride that took me 75 minutes to negotiate. Prior to that, I was riding probably the best of my life, ably assisted by great training programs put together for me by our very own Joachim. But serious inflammation and joint pain, along with cold chills (I usually tolerate cold very well, as I run very hot), followed by inflamed lymph nodes led me to seek several medical opinions (don't get me started on that bureaucratic HMO nightmare), which led to the diagnosis. I'll learn the staging tomorrow, but from what I've read, I'm anywhere from 2-4 on the Rai scale.

Though there is no apparent cure for my disease, my goal is to maximize my time with my family. And though I can't ride right now, I hope to get back on the bike for some rides with family and friends, including forumites I have met as well as those that I have not. This community has always treated me well, and I have made many great friends here. For that I am grateful.

Best wishes to you. As my son put on facebook(cancer survivor)..fu&k cancer..it is a scourge. Don't do all this alone..your family is the source of your strength, but you know that.

[Elefantino]

Robert, you are one of the many friends on here I have yet to meet face to face but I'ev always enjoyed your contributions.

Please keep us up to date and know that you are all of our prayers. Wishing you nothing but the best.

[mack]

Keep up the good fight....and yes, 'mind over matter', your greatest tool!



-mack

[CampyorBust]

My heart and prayers go out to you. I have dealt with this in my family. Be strong and persevere!

[cdn_bacon]

Thoughts are with you. Soak up the family rays.

[FlashUNC]

To quote seminal ska band The Toasters: Don't Let the Bastards Grind You Down.

Keep up the good fight and don't be a stranger around here.

[cfox]

Robert, very sorry to hear this. As someone who has dealt with a scary diagnosis (not me, one of my kids), I think I know some of the emotions you are feeling, and they aren't fun. At first, it's a cudgel blow to the head and it feels like life is over. But if things go reasonably well with proper medical care, things can return to "normal." It's a new normal for sure, but after time it begins to feel like life. It takes time, but at some point jokes are funny again, food tastes good again...you'll see what I mean. Best wishes sent out to you.

[fungusamungus33]

As many have said, my thoughts and prayers are with you now and in the miles ahead. Good luck. Cyclists are better at grinding out the toughest days and this will be no different. You are better positioned to fight than most...

Chris

[djg]

You are in our thoughts.

[DreaminJohn]

Fight the good fight.

Sending good thoughts your way...

[Fatty]

Sorry and clumsy words at best, but fight it tooth and nail.
I hope you are getting the best big city medical care, and don't be afraid to get a second or third opinion.

[soulspinner]

Every day is a new one. God bless you (and yours.) Prayers, hope sent to you.

[OtayBW]

Oh......I don't know what to say. I hope for the very best for you.

[Spdntrxi]

Best of luck to you.. Prayers as well.
I saw a news cast last night about participating in drug studies .. You should look into it.


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[StephenCL]

Robert,

It grieves me to hear this news...you are a great guy. We have nothing but positive interactions in the past....

My families thoughts and prayers will be with you my friend!

Warm regards,

Stephen

[jtakeda]

Horrible news,

But fight the good fight. The advancements in medicine, especially cancer research have been incredible.

I know over here ucsf just opened a gigantic campus who's focus is oncology.

Sending good vibes to you and your family

[merlinmurph]

I wish you luck, my friend. 24 years ago, my dad faced a similar situation with pancreatic cancer and is looking forward to his 90th birthday this summer.

Family is key.

[summilux]

But fight the good fight. The advancements in medicine, especially cancer research have been incredible.

I'll speak as a cancer researcher here to second this. As you probably already have found out, the 5-year prognosis for CLL is actually pretty good. Whatever clinical journey you are embarking on, keep that optimism in mind. You might also consider enrolling in a clinical trial for an experimental agent or treatment protocol. Trial participation is not for everyone and there are no guarantees there, but it it worthwhile learning about the trial process and exploring that option with your oncologist and treatment team.

Be strong

[mosca]

I appreciate the positive vibes you bring to this place and wish you the absolute best going forward.

[bking]

I remember the first time, several years ago i heard or read someone calling cancer the "loving disease", and did a double take. The idea is it gives notice, and time. It should cause us to put things in better perspective, and what's important rises quickly to the top.
Wishing you and your family the very best as you fight this. Good can come from some pretty dark places sometimes; I think we pretty much decide this.
I pray you are able to make this one of those times.

[chiasticon]

Not much to add what others have so ably said.

The positive attitude that comes across in your posts here will undoubtably help you in the struggle. Wishing you all the best.this

stay strong. wishing you all the best.

[wooly]

Robert - sorry to hear the news my man. Many many prayers to you and your family. Looking forward to seeing you sometime soon.

[6mt]

You've got this. Sending my prayers to you.


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[superbowlpats]

I remember the first time, several years ago i heard or read someone calling cancer the "loving disease", and did a double take. The idea is it gives notice, and time. It should cause us to put things in better perspective, and what's important rises quickly to the top.
Wishing you and your family the very best as you fight this. Good can come from some pretty dark places sometimes; I think we pretty much decide this.
I pray you are able to make this one of those times.

This x1000.

[pdmtong]

Robert, Like many others I have enjoyed sharing thoughts with you outside the PMs of this forum, and if not for geography would certainly have enjoyed riding with you (assuming I could hold your wheel). Maybe I'll just photoshop myself into that picture Wooly texted when you both were breaking in your gravel grinders sporting big $ hit eating grins. I recall months ago you mentioning health issues impacting your cycling and I am saddened to learn the diagnosis.

When my mom was diagnosed with stage 4 squamous cell carcinoma (SCC) of the ovary (super rare) we were all freaking out. I will never forget her looking me right in the eye and telling me to stop worrying, and that she was going to take control of the things that were under her control and not worry about the things she had no control over. She bridged past the anxiety caused by uncertainty based on strength of will.

You are in my thoughts.
Paul

[Keith A]

Your post physically impacted me. Although we've never met, yours was always one of the names I could count on for a post that added to the conversation, whatever the topic.
My heart aches for you and your family, I know the impact and toll that this can take on everyone, and know that all of us are here for whatever you need. Whatever we can offer through the little screen that frames our interactions, any advice any solace any jokes or any just inane bike talk (did you hear about the new BB standard??), we are here.

You will be in my thoughts on my next ride.My feelings exactly...my heart just sunk when I read your post. There are many thoughts running through my head, but know that you and your family will be in my thoughts and prayers...especially as you prepare to share this news with your other family members.

Be strong, love your family and stay positive...everyone here is pulling for you.

[bikerboy337]

So sorry to hear the news, you'll remain in my thoughts and prayers. Much love to you and your family...

[JAGI410]

With a positive attitude, anything is possible. Good luck good sir! Looking forward to your progress as you conquer this!

[gasman]

This is so sad. I'm sorry to hear this news. I've always enjoyed your contributions here.
Get the best possible oncologist you can and more importantly find one you get along with.
I hope and pray for a good outcome. Stay strong ,there are a lot of folks here pulling for you.

[Clydesdale]

So sorry to hear Uncle Jan. Prayers sent for docs, you and family.

[cnighbor1]

If you need someone to go have a beer with I or anyone on this forum would be glad to go with you and pay for the dam beer
Charles Nighbor
925 708-1295

[malcolm]

My best to you and your family and like you I'm looking forward to this being only a memory.

[dyerwolf]

I'm sorry to hear this. You are a stalwart of the community. Best wishes for a speedy recovery and being on the road soon.

[Black Dog]

Your news floored me and it took me a day to reply. Floored, not because we know each other personally, but because we are part of this place and we are riders. Sharing that is enough. We might not be able to do much but what we can do might mean a lot. Ask of us what you need from us and this place will provide that and more. We will take as many pulls as you need until this is behind you.

[rounder]

Keep the faith. Every day is a gift, Best wishes forever..

[LegendRider]

I'm terribly sorry to read of this news. I wish the very best for you and your family.

[marciero]

Oh man... So sorry to hear. Let me ad my wishes for peace and healing.

[Raffy]

Sorry to hear! Best wishes and prayers to you and your family.

[sokyroadie]

Keep the faith, enjoy every day with family & friends & stay positive.

Jeff