Desperate Measures
There was a terrifying period between when Susan first started having symptoms due to the tumors growing in her brain and when we finally knew what those symptoms meant.
During that period, I tried a lot of things, and was willing to try a whole lot more. When your wife of (nearly) twenty years is unable to sleep, losing dexterity, starting to have tremors, is getting lost in her own house, and is describing — convincingly — how she feels like she is losing her mind, you start start doing everything you can to help.
And as each idea fails, you increasingly discard “rationality” as a condition for trying out the next possible solution.
At first we tried simple stuff. Relaxation techniques. Massages. As is my style, I went overboard, buying around $75 worth of relaxation music from iTunes.
Next, we went pharmaceutical. Something those of you who’ve never dealt with a serious disease like cancer may not know is that doctors essentially give you the key to their magical medicine cabinet. I asked for — and received — two different kinds of sleep aids, two different kinds of antidepressants, and enough anti-anxiety medication to make every single Fat Cyclist reader very mellow for weeks.
Susan was taking so much go-to-sleep drugs that other people would fall asleep just by getting within ten feet of her.
Meanwhile, of course, Susan could not sleep at all.
“Maybe it’s the mattress,” I said, thinking back to how Susan had been able to sleep just fine on the very firm mattress we had at the hotel when we were at Disneyland in March…and totally failing to think about the fact that Susan had also slept just fine on our own mattress before then.
So we went to a mattress place and bought a new mattress. Not a cheap one. And of course she didn’t sleep any better on it than she did on our old mattress. I, on the other hand, much prefer the new mattress; I never liked having such a soft mattress before. So it’s not a total loss.
Shortly after this, we found out what was really wrong, and Susan got the help she needs for getting a decent night’s sleep, as well as the radiation and steroids she needs to treat the tumors.
Still, I sometimes wonder what I would have tried next. When you’re desperate, silly things start to make sense, and you feel like you’re being unfaithful to your loved one if you don’t explore every possible solution, no matter how remote the likelihood of it working.
Because, after all, maybe that’s the thing that will work, right?
The Desperation Continues
As I said, now we know what’s wrong and we’re treating it. But the feeling of desperation continues. If anything, in fact, it’s stronger than ever before. Because the treatment is strictly tactical. We’re buying time.
What we really want, of course, is something that will cure Susan.
And as it turns out, there are a lot of people out there who are happy to take advantage of our desperation.
I am not exaggerating when I say that not a single day goes by where someone sends me an email with a link to a professional healer who is using unorthodox methods and is achieving great success in curing otherwise incurable cancer.
And it is usually not strangers sending me these messages. I get these from family members and good friends. All with the very best and noblest intentions. These are people who want Susan to get better, just like I do.
But there are a couple things I have to remind myself of when I get these messages.
First, Susan and I agreed that we don’t want to spend the time she has chasing every potential magic cure, since there is honestly very little chance any of them will work. Neither of us want our time together being primarily spent in the pursuit of mirages. We want to spend our time together…together. With the family.
Second, a person I know and trust because he’s both a friend and a cancer expert, has explained to me that if any of these things worked, they could (and let’s face it, would) charge a million dollars a treatment, and the line to get in would still wrap around the block several times over. So the faith healer down the block charging $40 per session probably isn’t going to help Susan get better.
Both these things make sense. But I am desperate. And so I can’t help but ask myself, every time I get one of these email messages pointing me to someone in Mexico who’s seen promising results, “What if this is the one? What if this is the thing Susan needs? Am I killing Susan by ignoring this one?”
Even though I know — in my head — that this isn’t the one. And that I simply can’t investigate every miracle cure that’s out there.
What these well-meaning people sending me their cure-all possibility messages don’t understand, I think, is how much anguish their notes put me through. In spite of myself I find myself checking through them all, looking to see if this one actually has data showing they have had results specifically relevant to Susan.
So far, nothing. Just a spike of hope followed by disappointment, followed by a bout of guilt and second-guessing.
So here’s my plea, on behalf of everyone who is either seriously ill or is taking care of someone seriously ill: If you find out about a potential cure, don’t just lob it over the wall. Please, take the time to find out how real it is. Ask yourself, “If this were me and I didn’t have long to live, would I leave my family and travel around the world to do this?”
Because that is exactly the judgement call your email is asking your friend to make. And that judgement call doesn’t get easier when you’re desperate.
Comment by wackyvorlon | 05.14.2008 | 8:25 am
My best wishes to you and Susan. I have only started reading your blog in the past month or two, but I have enjoyed it greatly. I have read the experiences of some who have sought treatment from the charlatans you mention. Unfortunately, the results have been nothing short of horrific. They have stolen thousands of dollars from people in terrible need, and put those people through horrible suffering.
I am glad to hear that things have improved, even if only a little. Both you and Susan will be in my thoughts.
Comment by Derek | 05.14.2008 | 8:29 am
I completely understand. It’s like when you get those sweepstakes cards that say you just one a new BMW. I mean, what if you really DID win a BMW? Except this is way, way more excruciating than a BMW. SO maybe it’s nothing like it.
I don’t know if you read every blog comment or not, but I posted this sometime last week and just wanted to make sure you read it. Sure, it probably falls under the category of things that have a very low chance of success and that that you don’t want to spend your time together pursuing, but at least it’s actually medical…
“Generally, chemotherapy that does not pass the blood brain barrier is of no value in the treatment of metastatic brain tumors. The blood brain barrier is a natural protective mechanism that restricts the entry of substances into the brain. There have been a few studies that demonstrated the effectiveness of some drugs. Some forms of chemotherapy can be effective against metastatic brain tumors from breast cancer including cyclophosphamide, 5-FU, and methotrexate. Tamoxifen may also be effective.
Currently, clinical trials are testing a variety of drugs. Intra-arterial chemotherapy is being tested for the treatment of lung cancer metastases to the brain. Manipulating the blood brain barrier so that drugs can enter the brain is also being studied. The ultimate role of chemotherapy, alone or in addition to radiation and surgery, remains to be determined.â€
SOURCE: http://neurosurgery.mgh.harvard.edu/abta/mets.htm
Comment by Lazy Scrapbooker | 05.14.2008 | 8:29 am
I found you through Pioneer Woman and just wanted to say you, Susan and your family have another internet stranger praying for you all.
Comment by jenni | 05.14.2008 | 8:36 am
That’s really good advice. Thank you for sharing it.
Comment by bikemike | 05.14.2008 | 8:40 am
Elden,
my heart goes out to you man. i think about what Susan is going thru often. my girlfriend and i talk about it all the time, well, she listens and i talk and update her every day. i believe a miracle has happened and the fact that Susan has you is proof of that. i’m not saying there isn’t a cure but she has the one, best person in the universe that she could’ve hoped for in her time of need and i think at the end of the day, that’s the best you could ask for.
Love her with all your heart, it’s the best medicine on the planet.
God bless always.
Comment by Leslie | 05.14.2008 | 8:45 am
Ugh. As if you don’t have enough to deal with already. Sometimes well-meaning people can be very scary.
Comment by drKim | 05.14.2008 | 8:45 am
Elden,
That advice is quite profound. I’m sure that the people offering advice are doing so because it’s what they can…and they probably have NO idea how it is perceived. I know that probably not many of us (I certainly don’t) have ANY idea what it is truly like to be in your situation. You have lots of us, though, hoping, and praying for a miracle, and wishing we could help with more than just good thoughts and monetary donations…
Enjoy your time together. It is precious.
Comment by Les | 05.14.2008 | 8:47 am
Man, I’m sorry for what you’re going through. My mom died of brain cancer. I wish there had been a magic cure.
One thing that helped with symptoms was milk thistle extract. My mom had some trouble metabolizing the steroids after a while. Milk thistle is a liver booster. It doesn’t cure anything, but it helped her feel better.
The other thing that really helped her quality of life was marijuana. When she was getting radiation and chemo, she could barely eat. So I made chocolate pudding with pot in it. She could get down a bite of that and then about half an hour later, she was hungry and feeling better. She wasn’t able to learn to smoke, but pudding works almost as fast and lasts longer. It’s possible to consume an amount which makes you feel hungry, but not high.
Neither of those has negative interactions with the drugs my mom took, which are probably the same ones that Susan is taking. Marijuana has no known interactions with any drug, and it should be legal for sick people, because it’s practically miraculous as far as nausea goes.
Hang in there. Cherish every moment.
Comment by Emily | 05.14.2008 | 8:53 am
Hey Elden,
I feel so bad for you dealing with all of that. I think that the reason people keep telling someone about sketchy cures and totally inappropriate suggestions is because they just want to have something seemingly constructive to say and they just really don’t realize how unwelcome it is. If you were less of a nice guy you would tell them to screw off, probably. It really does make the whole situation much harder, since it can make a person question their decision making. Maybe you can’t stand at a crossroads considering all the possible choices forever, you gotta make the best choice you can and then keep on going down the trail.
Keep up the good work, and stay strong!
Comment by Jeremiah | 05.14.2008 | 8:57 am
Elden,
Thank you for taking the moment and helping us help you. Your family remains in our prayers.
Comment by Undomestic | 05.14.2008 | 8:57 am
Well said. May you find peace through this struggle. You’re an amazing husband.
Comment by Clydesteve | 05.14.2008 | 9:00 am
Banjo music. Though not a cure, it is cheap and readily available and makes many people feel better. Disclaimer: In my experience, banjo music should only be sampled in very sparse amounts. It would be sufficiently overboard to download 2 banjo numbers for say, the next three months. And play them no more than two times.
More seriously, I still pray for You, susan, and your family at 2:01 PST every day.
Comment by chtrich | 05.14.2008 | 9:17 am
Keep living life the most you can. As you said, it’s the best thing you can do now!
Comment by mamaface | 05.14.2008 | 9:17 am
Elden and Susan,
Having known your family for several years, one thing I know for sure is that you and Susan are truly generous to a fault. So I am feeling safe to assume that this post is probably one of the more difficult ones you have had to write. It is a gift to all of us that you share (another example of your generosity) your experiences with basically the whole world. Thank you for caring enough to give a glimpse of what your family is going through. I cannot express how much our family loves your family. You and Susan are truly soul mates.
Comment by TrEmLo | 05.14.2008 | 9:18 am
I think you are making great choices and that you have written a fantastic “letter” that should be sent by everyone who is in your position to their well-meaning friends and family. It should also be considered by all patients in this position. I am very close to a family whose father died of ALS and I watched as he spent tons of time and money in his last days trying every one of those miracle cures to no avail. It was very painful for every one involved – most unfortunately his wife and kids.
Good on you. And I’ll pray for you, your wife and family.
Comment by Jill | 05.14.2008 | 9:18 am
Elden,
My husband reads your blog more than he read mine. He sent me your link last week and I have been keeping up with Susan ever since. My mother is, so far, a breast cancer survivor. My father currently has terminal cancer. I understand your pain, your hope, your desperation.
I am profoundly grateful for your eloquent writing. It resonates with me. You write the thoughts that so often beat against my heart. Thank you for sharing and for putting it into words so that the rest of us my learn and gain courage from your valiant battle together.
Prayers from my family to yours.
Jill Parkinson
One of the DNA wives
Comment by Jules | 05.14.2008 | 9:26 am
I just wanted to let you know that I appreciate so much what you’re writing, as you are going to help others love on those that they love that are sick so much better. If that makes any sense. I’ve been reading your blog since PW mentioned you a few weeks back and I’m so sorry for what you’re going through. I’m praying for you all. Just keep smiling. I’m smiling for you all :) No despair here.
Comment by rachel | 05.14.2008 | 9:28 am
Elden,
Just remember you’ve got so much more time with Susan than just this little blink of an eye, and she’ll have forever to spend with your sweet kids.
Comment by leroy | 05.14.2008 | 9:28 am
FC –
You already have discovered the secret of life: cherish the time you have.
E-mail advice that interferes with that simple truth is by definition less than good advice.
Now speaking of e-mail advice, please excuse me. I have to answer an e-mail advising that I won the Irish National Lottery. I didn’t even know I had entered.
Comment by AlicesYellowPorsche | 05.14.2008 | 9:29 am
Polka might also be appropriate, but in small doses. You OD on that stuff and you end up skipping around the rest of your life. One polka per week. No more, no less.
Seriously though, you still have this Internet stranger and her family hoping the best for you.
Comment by carls | 05.14.2008 | 9:40 am
i just found your blog today – wishing you and your family every strength!
Comment by Little1 | 05.14.2008 | 9:49 am
tough. for me after reading todays post the only thing that comes to mind is that in fact you already have found the cure to this situation, you are spending it together and recording it for each other.
2:01 CAT+1 (Central African Time)
Comment by Joe L. | 05.14.2008 | 9:49 am
hey fatty –
You have always seemed like a smart, rational, and logical person, and i think in this case you must continue to think like this. Your Dr. friend is correct – if there WAS a cure out there that somebody had, and if it ACTUALLY worked, then they wouldn’t need to get customers from email forwards and shady websites.
“Alternative Medicine” practitioners are sometimes flat-out scam artists, but are also sometimes well-meaning, but generally naive people. They often like to claim that they have the cures that “the drug companies don’t want you to know about” or that Western Medicine is in the business of keeping you sick. This is all crap. Now while the big drug companies MIGHT BE greedy and money-grubbing, they’re still in the business of trying to help people, and what is the best way to help people? Offer them cures! You can bet that if there was a cure for any of this stuff, GSK or Phizer or Bristol-Myers or whoever would be ALL OVER IT, and would selling the hell out of it. Just imagine the publicity and money that would come to ANY drug company if they were the ones who “cured cancer”! They have no reason to ignore alternative approaches, as long as they work.
So some of these offers might be worth investigating, but most or all of them probably aren’t worth your money or time. Many of these people would just as soon bankrupt you, and Susan won’t be any closer to being better. I’m sure (I hope) that you and Susan know that your time left with her and the money you save which you need to continue to raise your kids is more important than the infinitesimal chance that any of these quacks can help…..
Comment by Pammap | 05.14.2008 | 9:55 am
It’s honorable of you to speak up; as mamaface said, it was probably not easy to do. Caring people always want to fix things. Those two characteristics seem to go together. You are kind to understand their intentions are good and wise to ask them to stop.
Love and prayers for Susan 2:01 p.m. CT every day.
Comment by kawika | 05.14.2008 | 9:58 am
in my last year of medical school, my mom was dying of leukemia. i searched the nih, all the clinical trials and everything else, yet i knew that my mom was receiving the best care that she could (from the chair of the oncology department), and that we had already had more than a year more than we thought we would ever had. i asked her to try one more round of chemo, but it didn’t work. so i thought then, as i think now, that dignity, the least pain possible, and as much joy as possible with our family was the best that we could do, for my mom and for us.
Comment by Dutch Girlie On a Bike | 05.14.2008 | 10:00 am
Ack I think there are as many “cancer cures” as there are diets out there! If they really and truly worked like they say they do no one would be fat and no one would have cancer.
Keep on with what you are doing — it sounds so special, making the videos and having the talks. Sounds like something everyone, cancer or no cancer, should do.
Comment by bikesgonewild | 05.14.2008 | 10:08 am
…just keep on giving the love you’ve been giving…
Comment by Sassy | 05.14.2008 | 10:13 am
There really are no words. I just wanted to let you know another internets starnger out here is touched by you, and I am keeping you and your family in my thoughts.
Comment by anon | 05.14.2008 | 10:17 am
There is cancer cure available. Unfortunately it’s available outside because of FDA regulation. Which means only the very wealthy can afford these curative treatmenst.
The US drug policy is controlled by the big pharmas. That’s a fact, the exact same medication in Canada is 1/10 the price in the USA.
You should contact John Kanzius and get into MD Anderson studies before the FDA stops him.
http://youtube.com/watch?v=BkzCSNTYWXg
Comment by Lori | 05.14.2008 | 10:26 am
Anon – Did you not read the post? As a FoF (Friend of Fatty), I ask you to stop. Just please stop.
Comment by paula | 05.14.2008 | 10:35 am
I second that.
Comment by KanyonKris | 05.14.2008 | 10:37 am
Elden, I empathize with you on this – I’d be the same way. I hope people will comply with your plea.
Comment by dug | 05.14.2008 | 10:39 am
anon, John Kanzius? that guy owes me MONEY!
Comment by ScottMc | 05.14.2008 | 10:47 am
During our cancer journey (which continues – always will), my wife has had and continues to have full permission to do what ever she wants. I’m naturally skeptical, she’s naturally hopeful. We went fully natural. We have no soaps, detergents or anything that might touch your skin that has alcohol in it. All of it very expensive. She drinks organic milk – twice the price. Suppliments that cost $100’s a month. So on and so forth.
Did it work? Physically – I’m not convinced. Emotionally – it gave her hope and beleif that she would beat it and I think that worked. But that hope came more from the people around her. That’s the biggest miracle cure.
Still, she gets what ever she wants. No way I’m going to stand over her grave and wonder if that one thing I said no to could have worked.
It’s a big, confusing mess with no real answer. Kind of like life.
Love your time together. That’s the one thing you know will work.
Comment by p | 05.14.2008 | 10:56 am
Elden, I’m a relatively new reader of your blog, but my heart goes out to you and your family.
This problem is particularly infuriating for anyone with a scientific or healthcare background. Most people know very little about medicine, or science in general for that matter. They don’t have the knowledge, skepticism and cynicism necessary to evaluate the myriad of miracle cures out there…health research abstracts are about the most incomprehensible things imagineable. .
The shysters who knowingly take advantage of the seriously ill are the scum of the earth. If you’re not already aware of it, I _highly_ recommend checking out http://www.quackwatch.com/
Comment by Elizabeth | 05.14.2008 | 11:07 am
Hi Elden and Susan,
I wanted to let you know that I signed up for the Livestrong Challenge in San Jose for July. I’m a mountain biker, not a roadie, but I’ll do my best. I’m hoping to get a pink Fat Cyclist jersey and to ride for Susan. I’m so sorry for the both of you. Please be well.
Elizabeth
Comment by This simple life | 05.14.2008 | 11:08 am
anon- apparently you missed the point.
Fatty- you keep doing what you are doing and enjoy every minute with your wife. I believe you are doing the right thing.
Comment by Epic Adam | 05.14.2008 | 11:08 am
I think most people must just be trying to help. Although some can overly pushy about the “help”.
Comment by Don | 05.14.2008 | 11:13 am
Very well put Fatty. I can’t begin to even imagine how it’s got to be for you. We’ll continue to Pray for you and the family. God Bless.
Comment by Megan | 05.14.2008 | 11:27 am
I have to say, its pretty funny that anyone would offer quack advice in the comments section in response to this post. People really amaze me. Anyway, I’m sure you are getting some good advice from people who have gone through this process before about how to make Susan more comfortable. Sorry you have to deal with the bs along with it.
Comment by Rocky | 05.14.2008 | 11:35 am
My aunt fell prey to one of those miracle cure schemes. “Come to Mexico” they said. “The treatment that we offer is not approved in the U.S. because the pharmaceutical companies don’t want to give the cure out in order to protect their profits.” Sadly and predictably, she cost herself and her family tens of thousands of dollars and exactly the thing that you are trying to preserve and for which there is no price or replacement – time.
With no professional treatment, she passed away much sooner than she should have, had she followed the original Dr.’s recommendation of chemo and radiation. You are a good husband, and you are doing all that you can that is within the range of acceptability for your wife. There is enough guilt and worry already with things being what they are. Don’t allow for any more of it to creep into your mind. Your burden is heavy enough.
Comment by Mike Roadie | 05.14.2008 | 12:09 pm
Do only what feels right to you and on the advice of those close to you whom you trust.
Even well meaning people can be wrong.
Yesterday was Livestrong Day, and we are quickly closing in on $10K for our webpage.
God bless you all and best to you…….
Comment by Bree | 05.14.2008 | 12:16 pm
My heart and thoughts are with Susan and you (and the kids!) during this struggle.
As a medical scientist (in cancer research) I am blunt with these ‘cures’ and conspiracy theories – show me the data. But I am not experiencing the suffering of a loved one so it’s easier to dismiss them.
As said by many in the replies – thoughts and prayers are with your family through this immense struggle. Time is what you have and what no one can provide extra of.
Comment by GenghisKhan | 05.14.2008 | 12:30 pm
Hey, I’m going to out “Anon”–his name is Ima Dumas and his last name rhymes with “Numb Bass”. Geesh.
Fatty, keep doing what you are doing.
Comment by ralph | 05.14.2008 | 12:54 pm
If you strip away the conspiracy theory from anon’s post you will find that the Kanzius radio frequency cancer treatment is legitimate. It has received federal funding through the efforts of Senators Santorum and Specter from Pennsylvania.
Experiments have been performed at the University of Texas MD Anderson Cancer Center and the University of Pittsburgh Medical Center.
The treatment has not gone to clinical trials at this time.
Comment by Ian | 05.14.2008 | 1:15 pm
As a physician I feel compelled to post. First, your request to avoid sending you every idea ever is wise. My advice: find a cancer specialist that you trust. Follow their advice. Eat well and take time for the important things (both of you) Praying and positive energy never hurts. In short, keep doing what you are doing. My alarm at 2:01 reminded me to check your blog today. Good luck.
Comment by Mocougfan | 05.14.2008 | 1:17 pm
Elden, (funny how I don’t call you fatty right now)
As a Doctor myself (dentist), I will keep my advice short. I’m fairly confident that Cancer will be cured. Some day. Hopefully very soon. I also know that there are many, many people who work in Medical schools and other institutions that are being funded to do the best they can to cure it now. My brother in law is at Harvard right now doing his residency. He got a 4.0 in undergrad and then went to Stanford for his MDPhD. He’s a smart boy. It will be someone like him that will find the cure. Not John someone in Mexico. Look for solutions and hope, but not in the wrong places.
I really hope the best for you, Susan, and your kids.
Chad
Comment by eclecticdeb | 05.14.2008 | 1:18 pm
Elden,
When my Mom was dying of breast cancer, one of the hardest things (for me) was being the one daughter she could talk to about actually dying. My other sisters kept telling her to “fight” and would berate her when she didn’t want to eat (chemo and cancer does that to you), or it took her 2 hours to get ready to go out to lunch (it hurts to move when you have so many tumors in your bones the PET scan looks like it is littered with buckshot).
It was my “job” to get my sisters to understand that Acceptance is NOT the same thing as Giving Up. Hard to do with family — you have to be considerate of their feelings as well. However, strangers are due no such consideration in this situation, and if your friends are truly friends, they will understand.
I think of you, Susan, and your kids often. You probably don’t understand it, but you are honoring Susan and your marriage more than you can possible know by sharing what you are going through.
-Deborah
Comment by Dr. Mac | 05.14.2008 | 1:35 pm
After watching my wife’s aunt die from ovarian cancer, it’s disheartening as a health care provider to realize in our technologically advanced society we still do not have the cure for this dreadful disease.
Her aunt wasn’t the first in the family either. We helplessly watched her Uncle’s sister, grandmother and grandfather pass from cancer.
Regardless of what it has done to our family, we DO NOT lose hope for the millions who are suffering today. We believe a cure will be found and lives spared for the sake of their loved ones.
You and Susan are in my heart and prayers. (3 John 2)
Comment by Anonymous | 05.14.2008 | 1:46 pm
I’m not one of your regular readers, but I hopped over here at the direction of BSNYC and have been reading about Susan. I truly wish that there was something I could do to help. I just wanted to let you know how touched I was by her story and your love for her, and that you’ll be in my thoughts every day.
Best of luck.
Comment by Karen | 05.14.2008 | 1:56 pm
I don’t like sports, but I saw on Pioneer Woman’s website that you needed prayer, so I stopped by your site to check out what’s happening. I want you to know that I will be praying for you, Susan, and everyone affected by what is happening. I will be checking back regularly.
Comment by Kristin | 05.14.2008 | 2:10 pm
Well said!!! Both of my parents died from Multiple Myleoma ( 58 and 62 years old). We didn’t get “opinions” from others because they were considered “old”. However, my sister and I hated the drugs they gave our Mom. They made her not be herself. It wasn’t until she died that I realized they made “HER” peaceful. It wasn’t about us at that time. There is something to be said about “quality not quantity”.
Comment by msj | 05.14.2008 | 2:16 pm
Elden,
I hope and pray that things work out for Susan and family. I have been a fan of your writing for a long time and your essays have helped fuel my dreams and love of riding. I’ve been there with you on the Leadville excursions, the RAWROD, and many other rides I’d never dreamed of because of your writings. Someday I hope to actually make one of your rides!
Thanks for providing inspiration on and off the bike. Even in the worst of times, you, my friend are truly blessed.
When I told my wife about your situation, she told me I’d better make sure to get the FC jersey this time!
My prayers and thoughts are with you!
mikesjones
PS-I am now eagerly awaiting the release of the ‘08 Fat Cyclist jersey. XL of course!
Comment by Duncan | 05.14.2008 | 2:25 pm
Deborah (above) got it right when she said that acceptance is different to giving up. My mother has cancer and she finds it very difficult when people urge her to do one thing or another when she herself understands her situation and has accepted what the outcome will be. You have your priorities right, enjoy the time together as a family.
Comment by Mitch | 05.14.2008 | 2:45 pm
I’ve just found your blog. It has totally overwhelmed me. It’s amazing that youare sharing your life in such a way. I would just like to give you and Susan a big hug.
Comment by ephany | 05.14.2008 | 3:01 pm
Thank you, thank you, thank you for posting this! I watched my mom be eaten away by colon cancer, and the entire time, she and my grandmother chased after one supplement after the next–which would’ve been OK, if it wasn’t coming from a place of complete denial. Meanwhile, it was all I could do to convince her to make a will.
I totally relate to electicdeb, except my mom was one of the people ‘in the bubble’ as I call it, which was extra hard. I wish she could’ve just accepted her situation and allowed my sister and I to ask the questions and have the conversations that are forever denied to us now.
Better yet, I wish she had gotten a colonoscopy when she found out that my grandmother was a colon cancer survivor over 10 years ago, which both her doctor and her sister (who’s a doctor) advised her to do, or not ignored her symptoms for years. /soapbox. Sorry to be off-topic but I know a lot of people read this board, and colon cancer caught early is so curable and caught late, is just so…not.
I say again, I’m thrilled for you, that you are taking the time to just enjoy each other and RECORDING your memories. Freakin’ brilliant.
Best wishes for good days and a minimum of encounters with people like anon.
Comment by Jim | 05.14.2008 | 3:07 pm
Dude, you just made me cry. Thank you for sharing all that. I am now going to call my wife and tell her how much I love her…
Comment by frilly | 05.14.2008 | 3:08 pm
I came over from the bsnyc link and just wanted to tell you my heart goes out to you & your family.
I lost my father to cancer at the end of March. God, I miss him.
Had to smirk at the magical medicine cabinet. My niece used to refer to my dad’s “medicine basket” as her vacation fund.
That’s the other thing, try to laugh whenever possible. It helps take the edge off now & then.
Comment by Shellyg8r | 05.14.2008 | 3:09 pm
I, too, have found your blog thru Pioneer Woman. I have no interest in cycling (sorry), but was profoundly moved by your posts about Susan. Please know that my family’s thoughts and prayers are with you. And keep loving each other and savoring each precious moment together.
Comment by UltraRob | 05.14.2008 | 3:23 pm
I’ve also heard people talk plenty about miracle cures in other countries. I always think if it’s so great why is it not available here. I know the FDA has it’s issues but if there really was a cure doctors would be pushing for it.
My brother-in-law just left Saturday for one of these miracle cures in Germany. He has very aggressive lung cancer. The only thing his doctor he says they can do is have him on chemo the rest of his life. He and his wife are desperate to find something else better than that.
Since I don’t know a miracle cure, I’m going to donate the earnings from my cycling and outdoor gear search this coming and Monday and Tuesday, May 19th and 20th to Susan’s WIN fund. More details on my blog at http://tinyurl.com/69thya
Comment by surlysimon | 05.14.2008 | 3:41 pm
Elden
Two years ago we were faced with similar news, my brother in law was diagnosed with brain tumors and given months to live. While hope must allways drive you on to looking for a cure don’t let it take you over. You and susan are not this disease and the best thing is to enjoy each day and take each day as it comes, the future is now. Please know that there are people thinking of you on the other side of the world.
simon
Comment by Beast Mom | 05.14.2008 | 3:45 pm
Hey FC,
I’m glad you guys had a good weekend and got to do some recording.
It’s hard to accept that this is happening to your lovely wife. I really don’t even know what to say. I just got caught up on your past couple wks of posts.
You and the family are in my thoughts and prayers.
-bm
Comment by Andy Pandy | 05.14.2008 | 3:50 pm
All the best from the sickos over on BSNY. Soon when he /she jumps the shark we will all be going cold turkey and of need of a new hit of internet escapism.I had a wonderful illness called cryptococci meningitus which is a fungal infection of the fluid that cushions the brain. I told every one that I was growing mushrooms in my brain. The drugs sucked and the ups and downs in my life were extreme. A sense of humor and a determination to stay as normal as possible kept me grounded and focused on getting out of that tunnel. Just the knowing that someone super special is around you is the greatest of gifts
Comment by Thom | 05.14.2008 | 4:19 pm
My prayers are with you and Susan, Fatty.
I keep an open mind about the alternative cures. I have no need for them at the moment, so I have that luxury. Really, some of them are no crazier than the idea of focusing deadly radiation into your body. The radio-frequency treatment mentioned above seems to have possibilities but needs some testing.
Hope for the best…
Comment by Kenny's neice | 05.14.2008 | 4:21 pm
I know how you feel. It’s like those car ads that come around in the mail, only so much bigger. You scratch off the gold paint and think: “Yay! Matching number!” and then you think: “Wait, I wonder how many other people got the matching numbers.” Then you feel all down and depressed. But then, in the mail comes another ad and, of course, you have the matching numbers on that one as well.
Just have a bunch of family time and smile. Smiling always helps. Even if you feel awful and don’t feel like smiling, someone else in your family and friends might see your smile and think: “If he can get through this with a smile, then I can too.”
Comment by Kevin | 05.14.2008 | 4:43 pm
LOL. Your story about well meaning people really made me smile. I was diagnosed with testicular cancer and lymphoma last Jan and every well-meaning person either looked at me like I was dead already or told me about their Uncle Vito who’d lived an extra ten years from pancreatic cancer by eating elderberries that had passed through the colon of a pregnant goose. It got to the point where I would, in my altered treatment state look them straight in the eye and say “No he didn’t, think about what you are saying for a second.”
You are right to cherish every moment you have, period, and to do all the things you are already doing. You needn’t hear that from me, but I hope you know that lots of people do know, and do care. I laughed again at the opening of the Dr.’s script pad, been there, done that. :) That is wonderful.
So, hang in there, and remember to take care of you and yours.
Comment by Dragonfly | 05.14.2008 | 5:29 pm
Am praying for you guys.
Comment by Joe | 05.14.2008 | 5:37 pm
suffering always ends, then we have peace!
stay strong!!
take care
Joe
Comment by Heather | 05.14.2008 | 5:38 pm
Hang in there, Fatty. I can’t even imagine how hard this is for all of you, but you and your family are in my thoughts and prayers.
Comment by Kathy | 05.14.2008 | 6:17 pm
I am another well-meaning person, and I hope you don’t take this the wrong way because I only have your best interest at heart. Bob, get a haircut!
Comment by Di | 05.14.2008 | 6:34 pm
Elden,
I only hope that you and Susan can both find inspiration to laugh together. I hope that those who comment here provide that inspiration. You deserve a chuckle.
Di
Comment by Jenn @ Juggling Life | 05.14.2008 | 6:48 pm
I have researched everything about lung cancer (having lost my mother, sister, and good friend to it recently). I’m shocked at some of what I’ve read.
There is no way I can believe that the medical-industrial complex is engaged in a conspiracy to keep us from knowing there’s a simple, non-pharmaceutical cure just so they can continue to make money. Certainly not after dealing with the fantastic doctors and nurses who do their best to save every patient they have.
I hope you give people pause with what you’ve said. Sending positive vibes your way from San Diego every day.
Comment by Maile | 05.14.2008 | 6:51 pm
I have always loved your humorous writing, but today’s serious piece was just simply amazingly impactful (if that’s a word–it’s what I mean, anyway).
My thoughts and best wishes go out to you and Susan. I’m riding exclusively in my pink jersey and eagerly awaiting the new one.
With much aloha,
Maile in Florida
Comment by Amber | 05.14.2008 | 6:53 pm
Gracious. I just came over here from Pioneer Woman’s blog, expecting to read the same ol’ Fat Cyclist I came to know (and laugh about) during our MSN days. And I came across an unexpected battle for your dear wife. Best wishes and much strength during this time and I’ll be tuning back in regularly!
Comment by Grace | 05.14.2008 | 7:05 pm
Hi Elden & Susan … My thoughts and prayers are constantly with you. My husband (age 51) was diagnosed with prostate cancer recently. He was accepted into a clinical trial and in March had his treatment (fortunately in our own country, Canada). We won’t find out until late June if it was successful.
Comment by Glenda | 05.14.2008 | 7:29 pm
Nelson family…thoughts and prayers…thoughts and prayers…thoughts and prayers…thoughts and prayers…thoughts and prayers…it’s all we can offer now…but take it with LOVE!
the Daspit family
Comment by SpikeBlue | 05.14.2008 | 7:29 pm
Elden, you have hit upon a subject that very few people broach when you are dealing with a life threatening illness. As with most peoples stories, one moment I was a very healthy active 37 year old. The next minute, I was diagnosed with a brain tumor that thankfully is a low grade but is in a problematic place. My parents, trying to be helpful, have sent me almost every medical research paper on brain tumors they can find. I finally had to tell them to stop. I needed to be informed (which I did very diligently), but I don’t really want/need to be a Neurosurgeon specializing in brain tumors. Thankfully, no one has pushed any alternative cures on me. I have found it is hard enough to navigate the existing conventional medical treatments without tossing the unproven medical “cures” into the fray. Given how much time and energy looking into each alternative takes, at some stage you have to say enough is enough and trust your doctors.
I think of you and your family often and wish you many happy moments. Your most recent posts have really hit home, since our family has experienced many of these same conversations in the last six months. I loved your video taping idea. I may even consent to buying a camcorder!
Long term reader – SpikeBlue
Comment by Jerry | 05.14.2008 | 7:38 pm
Fatty,
having a chronic/ rare condition myself I’ve been “helped” so many times in just the way you describe. Fortunately for me it’s currently life threatening just terribly life limiting. I feel for your family and for you and Susan.
WOW… after all of that I actually do have something else to say so back on track. I’m sure you are aware of the NIH site. I found it invaluable. If you truly want to look for a potential needle in a haystack the NIH database of clinical trials lists every approved drug test going on in the US at any point in time. The one thing I know is even your doctors may not be aware of all of them so at least you can research them as ask them about them. Not as romantic, far less likely to work, but controlled and verifiable.
Oh here’s the web site http://clinicalstudies.info.nih.gov/
Comment by Whitney | 05.14.2008 | 7:42 pm
I don’t know you. I’m not a cyclist. A friend of mine told me about your blog, and I am humbled. I come to see if I can spend time with your thoughts daily. Thank you for your thoughts and your undressed honesty. You are an amazing husband to this woman. My love through the internet and the ethers to your wife, and your family.
Comment by A different Rachel | 05.14.2008 | 7:43 pm
Amen to your post above. A dear friend of mine lost her father to prostate cancer a few years ago. During the last few months of his life, he forked over a great deal of money for a “miracle cure” from Mexico, leaving his widow far more impoverished than he had planned, or really wished.
That said, there appears to be truth to the recomendation about medical marijuana increasing apetite, if that becomes an issue. After seven years working with AIDS patients, my experience is anecdotal not scientific, since I was doing social work rather than medical treatment. But I have seen it work. Whether or not it violates your scruples is another issue, which only you and Susan can resolve.
Best of everything to you and yours.
Comment by BotchedExperiment | 05.14.2008 | 8:15 pm
I can prove to you that the FDA is blocking “the cure” for cancer: Only people in the USA have cancer.
Comment by Sara | 05.14.2008 | 8:16 pm
Hey buddy – followed you here from Pioneer Woman’s site. I’m not a cyclist either but just wanted to say that I’m really proud of you. You have a beautiful family and you are doing an awesome job of taking care of them all. Tell Susan – she has to finish the novel. I want to read it!
Take care.
Comment by the greg | 05.14.2008 | 8:21 pm
hey fatty. they DID cure cancer. then four years later manhattan was quietly deserted. i love will smith. i hope this helps. if it didn’t make you laugh, think of the last joke that did. wasn’t that one hilarious. we love you buddy. you’ve shared with us your laughter. now let us share your pain. i’ve never been good with stuff like this.
Comment by Wild Dingo | 05.14.2008 | 8:24 pm
That is exactly why I never volunteered any ideas to you, although I had plenty. It’s irrelevant because its a given you’ve been down every possible path. Healthcare is a very personal choice. And choice of treatment is as political, as well, politics or religion. People with strong convictions in both Western and Eastern care “should” all over a patient or their loved ones and its hard enough when you’re “should-ing” on yourself. Whatever the choices you make, they “should” be respected.
What you’re doing now, makes perfect sense.
Much good vibes and peaceful sleep to you and Susan.
Comment by Philly Jen | 05.14.2008 | 8:27 pm
Fatty, I’m glad to read that you’re going to go all Andy Kaufman on us only when it comes to humor, not medicine.
Susan, sending good thoughts and good vibes out to you!
Comment by Yukirin Boy | 05.14.2008 | 9:54 pm
I too really cannot comprehend what you are going through. But well said, You are doing what is best for you two and that makes it right.
Best wishes to Susan and your children too.
Comment by Mathew | 05.14.2008 | 11:05 pm
You guys are in my prayers. Elden, your heart makes me rethink my heart.
Comment by Frizzlefry | 05.14.2008 | 11:16 pm
Someone had to say it. It would be so lovely if more people read this post and understood.
4 years ago, my best friend called me right in the middle of church and informed me that her breast cancer had metastasized into her bones and she was stage 4, terminal. Just like that, from encapsulated and removed and clean bill of health to terminal. Which of course, left me reeling.
So I walked towards RS, tears streaming uncontrollably down my face, and someone asked what’s wrong and someone else related the phone call, and damned if that woman didn’t pull me aside and tell me all about essential oils and a tube and miraculous recovery rates and “I myself am living proof that this works and will cure your friend forever” from BONE METS!
And through the haze and the fog of this news, it suddenly occurs to me that the woman is telling me to fill some plastic tube thingy with oil and ask my best friend to insert it in her butt. And she will be cured.
And I start to convulse with laughter at the absurdity but I’m still crying and snorting and snot is EVERYWHERE. And I hear this little voice inside my head say, “What if it works? It might work. . .”
Someone has to tell all of the well meaning helpful people that it’s OK to say, “I love you and I will be here for you while you go through this” And put their miracle cures right where the sun don’t. . .wait. I guess that was her point after all! :)
But we love you and we’ll be here for you as you go through this. . .
Comment by Saso | 05.14.2008 | 11:30 pm
It is heartbreaking to read this. Yet you are right in your decision. Stay together as much as you can.
Comment by buckythedonkey | 05.14.2008 | 11:49 pm
Well said, mate. Love and hugs from London.
Comment by Swedoz | 05.15.2008 | 2:18 am
I totally agree. Luckily you have your friend the cancer expert to bolster your sense of sensibility (did I just write that?) as things become desperate. Just keep raiding that magical cabinet as you need too.
Comment by Evin | 05.15.2008 | 3:36 am
Fatty,
Your faith right now is going to provide the most comfort to you, Susan and your family. You are truly inspiring in your efforts, honesty and most of all the love you have for Susan. It shows up so much in the glimpses you share here on the web. I appreciate being included, pray for a miracle, and pray for your peace of mind. Personally, I like the meditation idea, (aside from screaming downhill through the woods on a mountain bike). It is times so challenging that we forget what has brought us so far in life. Remember to take time for yourself, Susan and the kids will be all the better for it.
Evin
Comment by KatieA | 05.15.2008 | 3:55 am
I’d gotten a friend posting on my blog a link for me to pass onto you – I decided not to forward it on, because really, as your doc says – if it were true, would they be lining up out the door for it??
Still praying and hoping and sending all the good thoughts and karma your way.
Comment by MikeLovesHisBike | 05.15.2008 | 4:01 am
I don’t know what faith you are but have you considered receiving a priesthood blessing from one of your Mormon neighbors? There are no guarantees that this will be the cure but it can’t hurt. It costs nothing and I’m sure one of your Mormon neighbors would love to do this for you. All you have to do is ask and they will help you out. Just a thought.
Comment by Kate | 05.15.2008 | 5:00 am
I’m sorry for what you are going through with the desperation..
I admire your honesty.
Comment by Nancy | 05.15.2008 | 5:38 am
I’ve just begun reading your blog (thank you, Ree) and must add my thoughts. I wish everyone who first approaches any sort of medical battle as you & Susan are could read this post from you. A close friend of mine is battling cancer & had a doctor try to convince her to try a medical treatment that “only” cost $1,000,000 (I am NOT joking) and MIGHT help her (a less than 5% chance). Excuse me? Yeah, let me just hand that over right here & now … *sigh* The anticipation, the hope, the “I have to try it, don’t I?!?!?” process is excrutiating.
I will add you & Susan & your family to my prayers. And I will come back to read more … May you find the moment-by-moment strength through this journey. Please give my thanks to your friends & family who give you support, love & care.
Comment by Nina in Ohio | 05.15.2008 | 6:08 am
It is a measure of how much we love someone by what we do to try to alleviate their pain and suffering. When my daughter was in intense pain from an appendicitis attack and the doctors at the hospital didn’t want to give her pain medication because they weren’t sure what she had, I just about committed murder. And when my husband was diagnosed with cutaneous lymphoma, I researched the hell out of his disease and thankfully found the specialists that treated him. He’ll never be “cured” and we live with the disease, but life is better.
So, I can relate to your desperation. It’s something that you will continue to live with – so as you’re looking for all the things that will make Susan’s life easier – please don’t forget about yourself. You’re going through tough times too and you need to continue those things (like riding with your friends) that give you comfort and sustain you. Because that will allow you to give Susan and your children what they need. Continue to lean on your friends and your family. Allow them to help where ever they can – it helps them deal with the pain and frustration of being helpless.
And include your kids in a couple of those conversations – they’ll want to have video of themselves with their mom when they get older. My thoughts and prayers are with you and your family.
Comment by Linda from Portland | 05.15.2008 | 6:23 am
Thank you so much for caring enough to do these posts, they really mean a lot. These postings really hit home for me because my son went thru cancer treatment last year including stem cell transfer (and is incredibly riding the 400K this weekend). During the time of my son’s treatment(s), we found out that my older sister had lung cancer. It was about six months later that she past away in October 2007. Our family also received all of those requests from friends and family members to seek the miracle cures,fly to Mexico, go to Houstin, take the magical medicine, etc. It does make you feel guilty, but as my sister said it so bluntly: “screw the cures that may or may not work, I want to spend the rest of my time here with my family enjoying each day as it is”. And coming from her, that meant a lot because all of her adult life was spent trying to find the cure to “loose weight, win the lottery, etc”. I was so grateful that she did enjoy each day as much as she could. There are many people who care and want to help, they mean well, but please don’t have guilt. You are doing all that you can and my prayers are with you. Love, Linda
Comment by Joni | 05.15.2008 | 6:33 am
Funny that as I read your posts and my heart goes out to your family for all you are enduring….I cant help but feel an enormous sense of how BLESSED Susan and your children are. Actually, include yourself in that too. Sounds crazy to find a blessing in all of this but that you have one another and you are being sensible and taking the steps that YOU feel are best for your family. So many are enduring this alone or as you say…are spending precious time chasing every “cure” when the real “cure” can only come from one place. It is not giving up….it is being the man of your family and embracing each moment. It is making Susan feel safe, cared for, loved, etc., etc., and teaching your children the most valuable lessons that life has to offer. Bless your heart for being the man that so many are not. Bless your heart for having the strength. You have more than you know. I could go on and on….but I wont. We will continue to pray for your strength and for all of your family. Perseverance. You know it well. In many ways….Susan is very blessed. I don’t even know her but I would like to thank you for being who you are for her and for your children. What a blessing.
Comment by julie | 05.15.2008 | 6:49 am
I have spent loads of money on desperate measures. I’m still spending and searching. I have found many things that help, but no miracle cures. God gives me the miracle of getting through each day and making the most of it. I am praying for you and yours.
Comment by Daddystyle | 05.15.2008 | 7:26 am
No miricle cures from us but.. laughter is good for the soul so her is a lame cycling joke.
Why can’t bikes stand up on their own… [place drum roll here]
They’re two tired, get it,2 tired [place uncontrollable laughter here]
Hope that at least got a giggle
Still thinking and sending positive vibes.
Love the Stanhope clan in Halfmoon bay, BC Canada
Comment by Ka_Jun | 05.15.2008 | 7:42 am
Lit a candle for you and your fam, fatty. Keep fighting.
Comment by Cindy | 05.15.2008 | 7:48 am
Today I left my house feeling depressed about our finanical situation (hubby no job),and we had just bickered over some silly thing about the garden. I had read your blog once before and then today PW mentioned it again. My heart aches for you and now I see my problems are so tiny. Thank you for sharing. In many ways you and your family are helping others. God bless each one of you in the journey ahead.
I love the idea of recording your memories!
Comment by Marge | 05.15.2008 | 8:26 am
PW sent me over this morning……I will be reading your blog from now on. I can connect with you. WE have an appointment tomorrow morning for an MRI for my mom. Of course she is much older than your wife (mom is 85) and there is probably some dementia going on anyway, but symptoms in the past four months have changed drastically. Two months ago she was driving! Now she needs 24/7 help, which my siblings and I are providing at this point. The first MRI showed a shadow or something….so we’re doing a sedated one tomorrow.
Please know you will be in my thoughts and prayers.
Blessings~marge~
Comment by Yvonne | 05.15.2008 | 8:41 am
God Bless You & your family, I’m going through our fight with my mother’s breast cancer right now as well, just keep giving the love and support and enjoy every minute.
Comment by Dayna | 05.15.2008 | 8:51 am
Elden and Susan,
Just a note to let you know that I am reading your blog daily and that you are in my thoughts and prayers constantly. I feel at a loss as to what more I can do, but please tell Susan I love her and to hang in there! I miss having you as neighbors.
All my love-
Comment by NW | 05.15.2008 | 8:54 am
Well put, Fatty.
I don’t know what to say, except that even though I don’t know y’all personally, you’re in my daily thoughts. Keep fighting with Susan. What you’ve shared of your marriage is a beautiful picture. You two don’t deserve this. I am sorry this is happening in your life. Thank you for your honesty and letting your readers into this very personal struggle. Hopefully, the comments can be an encouragement, rather than a discouragement. I hope people respect your wish about sending links to you. It just wastes the time you and your beautiful family are trying to share together. Take care.
Comment by stefano | 05.15.2008 | 8:54 am
Love, prayers, laughter, (an apple a day?). Try them all, keep it real; focus on your family and loved ones. Don’t know if you have a faith or practice it, but some very level-headed people I know have given personal testimony to the healing power of prayer. Susan is in mine daily.
Comment by Carolyn | 05.15.2008 | 8:59 am
I hope you have peace and happiness for all the time you have together. My father in law has a late stage GBM primary brain tumor. He chose not to go to extraordinary measures to fight it. He wants to fish. He doesn’t want chemo. I wish the doctors and nurses would keep their opinions about his choice to themselves.
Good luck.
Comment by john | 05.15.2008 | 9:06 am
sent over from BSNYC… Ever tried living foods diet, or read about it? No gimmick, no money, its simply eating fruits and veges. I haven’t tried it, but read enough about it over the years, that i now try to limit the processed food and increase my fresh fruits and vegetables. Its so simple though and doesn’t cost anything… and cancer is big business, really big business, especially the non profits, so there will never be a “cure” so to speak… but the cure and prevention is there in a clean and simple diet.
Comment by no-man | 05.15.2008 | 9:09 am
The sad thing is that people who send you stupid fake cures are doing for themselves, not for you. They’re afraid of what they can’t control. They want to believe that if it were them, they would be able to control it. So they send you some miracle diet or faith healer info and it makes them feel more in control.
I’m sorry to see your situation move from treatable to not-so-controllable. Give it your best, love and hope every day, but in this case hope may be that you are accepting what is and doing the best with what you have. Sounds like you’re on track.
God bless you and your family.
Comment by jm | 05.15.2008 | 9:47 am
A good friend of mine was diagnosed with stage three lukemia. The doctor told her she had 3 months to live and should prepare herself. It is twelve years later, she is in full remission and has since gotten married, had two beautiful children and kept motivated.
Don’t always believe what the doctors tell you. I truly feel for you and Susan, I wish you the best of luck. The love and support of friends and family, keeping a positive attitude and staying motivated is one of the best things you can do in this kind of a situation.
Keep your head up, don’t give up and we all are praying you get through this hard time.
Comment by andrew | 05.15.2008 | 10:16 am
Sorry to hear the news. Hope you can keep your spirits up, as I’m sure it’ll be contagious and help your wife keep hers up too.
Thanks for helping us keep life in perspective. Best wishes.
Comment by Ti | 05.15.2008 | 10:18 am
Hello,
I am not a regular reader of your blog, but Pioneer Woman mentioned your site so here I am.
I am so sorry that you and your wife are going through this. I cannot even begin to imagine your desperation right now. Please know that although I
am a stranger to you and your wife, I am still
thinking of you both.
Ti
Comment by f. carnivore | 05.15.2008 | 10:21 am
Referred over here by BikeSnobNYC’s site. It doesn’t seem like there’s much I could say to make anything better, but I just wanted to offer my best wishes for you and your beloved.
Comment by Roman Holiday | 05.15.2008 | 11:58 am
I’m a chemist turned nursing student with an interest in cancer. I know this rough. Hang in there, both of you.
Comment by Leatherface | 05.15.2008 | 12:30 pm
hang in there! i am very sorry to hear that a rough hand has been dealt to you and Susan, but there is always a pot of gold at the end of a rainbow (even a crappy one). buying a jersey to make a small contribution to your fight. wish i had a cure.
Comment by Laura | 05.15.2008 | 1:27 pm
I too was sent by the Pioneer woman. And like the above comment I wish I could offer something to ease your pain and your wifes. May god be with you and your family during this tryig time in your life! Many prayers for you!
Comment by Barb | 05.15.2008 | 1:30 pm
Too many people I love are fighting cancer and all I can do is pray for you all, and know that I’m deeply sorry. I hope that’s something. Love ya Fatty, and Susan too.
Comment by Karen | 05.15.2008 | 2:57 pm
I wish you and your family the best.
Comment by bikerhead | 05.15.2008 | 5:06 pm
I do feel sorry for you. Enough has been said about the cancer thing, and yeah, that sucks that it had to happen this way. What I feel sorry about is the fact that, though you asked for a favor–to not send crappy miracle cure advice,–the truth is people still will. They are well meaning, and think they’re different than ‘those other guys’.
I know from my own experience that people, for whom you have high regard, may say things that strike you as absolutely horrible–at the time, also. Understand that you are in their thoughts, and leave it at that.
Make no mistake, I’m not here to tell you what you must do (unless it involves a bike.) I’m not going to offer my advice (unless it’s about a bike.) I’m not going to try to convert you (except to a bike.) The truth is, you probably stopped reading these comments a while ago. I will offer this:
Time is the best gift anyone can have or give to another. I know because I never have enough. Some of the best moments I have with my husband, is when we are holding each other, and we’re not even saying a word.
Comment by Leslie | 05.16.2008 | 7:14 am
My husband’s the biker, so I usually read your posts but don’t necessarily comment. Today, as the cancer survivor myself, I have to take a minute to thank you for your post. You are kind to see people as well-meaning, but when you’re on the receiving end of endless “ideas” or “advice,” it is EXHAUSTING. Thank you for writing this, and for sharing so much of your experience. I think of you, Susan, and your family daily.
Comment by Erica | 05.16.2008 | 11:18 pm
Less than 6 degrees of separation between us–just a couple, as I’m drlogan’s mom, and his blog led me to yours. I’m praying for your family, and encouraging you all in my heart. When my dad was diagnosed with a brain tumor, well-meaning relatives suggested some of the cures you’ve mentioned. It was tough to read those emails. Tough, too, to see my dad’s frustration over losing various abilities at different times, but so good to see his strong spirit and his satisfaction with the life with which he’d been blessed.
Your taping idea is beautiful. What a treasure those recordings will be.
Comment by A.P. | 05.17.2008 | 12:21 pm
Came over from bsnyc. I was out on a ride today, took a fall and suffered a mild concussion, felt pretty sorry for myself because I had to go to the doctor, then home, surf the net with a headache and a dent in my pride instead of continuing on with the rest of the group.
Well, your post puts things in perspective, and I’m grateful for reading this today. As a final year medical student, it was also professionally interesting to get an insight into the onslaught of people with good intentions that face families with cancer. From my experiences with cancer patients, you’re doing the right thing. All the best for you from Finland.
Comment by Someone in the Wasatch Front | 05.18.2008 | 7:06 am
My son died of a brain tumor and we went through EXACTLY what you are talking about. The most painful part of the whole experience was not what most people might think. We knew how to live life–the kindness of others meant everything to us, our faith got us through. His death was heartbreaking and beautiful. Truly the most horrible part was the pain and humiliation I felt as, at the end of his life, I fell for one of the hoax miracle cures. Facing the shoebox of “miracle medicine” after his funeral was so awful–I felt so used and gullible and embarrassed that even though I had been warned by my son’s doctors that people would come out of the woodwork with miracle cures that I should pay them no heed, I still fell for it. Seriously, that WAS the worst part of his death. Please stick to what you know now–and to what real doctors tell you. Don’t let the hucksters and liars add humiliation and regret to all of the other emotions you will be experiencing. God bless your family in this sanctifying time.
Comment by Suzanne | 05.18.2008 | 6:16 pm
Wow, you so eloquently said what I had felt and attempted to explain to my husband and others when I was going through cancer treatment. I DO NOT WANT TO F*CK AROUND WITH ANY OF THESE SNAKE OIL CURES, THANK YOU VERY MUCH. I’m fighting for my life so you betcha I’m going to go with “tried and true”! There is no conspiracy by doctors, pharmaceutical companies, government agencies, etc., etc., etc., to suppress knowledge or treatment that can effectively treat or cure cancer — what is out there (treatment) and available to the general public is what is safest and most effective for most people, so do not try to sell me on “miracle cures”! Most people in the medical profession DO genuinely care about helping people to get better! (I like to think positive and find that I usually get what I expect!) I think most people who are going through cancer treatment also do not want to f*ck around when it comes to getting cured! For those of you who have never had cancer, the reason that such strong methods are needed to kill cancer cells is basically because cancer cells are “evil” and immortal, so you have to attack with extreme prejudice in order to obliterate them. Which is why cancer treatment can be so hard on people, you have to kill some good cells in order to kill the bad ones. Another thing–don’t encourage people to disregard their doctor’s advice by taking supplements or things alleged to help with treatment, etc., as some of those things can actually interfere with treatment and/or cause other problems! So my advice? Offer up prayers and positive thoughts, support, and encouragement and trust that (in most cases) the doctors really do know best. (off my soapbox now, and the best to you and Susan!!!!)
Comment by Joanna (Ireland) | 05.19.2008 | 5:01 am
Hi. I’ve only discovered your blog today. I feel compelled to leave a comment, I can’t just close this tab and forget that I read all this. I am a full-time cyclist and a nurse who has worked in haematology and oncology. Everyday I saw husbands/wives just like you and my heart went out to them but I never got this close to fully understanding the sheer desperation that accompanies oncology treatments. I dunno what I’m trying to say here… All I hope for you right now is that your wife feels normal again soon and that the two of you can share some encredibly special moments together, today, tomorrow and in the future. Best wishes, Jo.
Comment by Mama Nabi | 05.19.2008 | 10:08 am
No miracle cures here… just that I’m keeping you in my thoughts, that I hope whatever time you have together, be it short or very very long, you get to spend as much of it together, loving each other and creating fantastically beautiful memories of each other. With lots of love and hope…
Comment by Craig, The Fanders Fat Cat | 05.21.2008 | 7:43 am
Fat Cyclist,
Besides riding bikes and being at a less than optimal power to weight ratio, we also have another thing in common. My wife was also diagnosed with breast cancer last year. Thankfully, all has been going well, but it is still scary stuff. Just last week she went so far as to have all the top female (and nonessential)cancer offenders prophylactically removed from her person. Still she doesn’t really feel “safe.”
Another oddity is that my wife is a neurologist and I am a chiropractor; so, we see this thing from mainstream and alternative. Let me tell you that you are right to ignore most of these folk remedies, at least with regard to breast cancer. Although the FDA and the AMA can be a little…territorial, I can tell you that if there was a definitive cure for cancer that could be sold, by God they and the drug companies would be right on it. Everybody knows about the friction between the pharmeceutical giants and the proponets of natural cures. But, when irrifutable evidence comes along, they jump in with both feet. Look at Glucosamine for joints, Medico’s prescribe it all the time now and it is on the shelves everywhere. All the big boys are selling zinc now for colds. At the risk of having my pals beat me up, rest assured that you are doing the right things. Well paid people are out in the deepest jungles taste testing grubs and distilling exotic flowers looking for the next big thing in cancer. If somebody was sitting around in good ole Mexico with it, the heavy hitters would get it and sell it.
Comment by Stewart Paterson | 05.22.2008 | 12:20 pm
Came here via Whiskey Before Breakfast.
I’m a cyclist too. Did Paris Brest Paris in 2003, will try and do it again in 2011 before I turn 50.
I’m a little bit fat.
I don’t pray, but I do feel. It’s crap isn’t it? Whatever we say will sound trite and lightweight. Hang in there.
Comment by Nancy S | 09.20.2011 | 3:26 pm
I’ve been troving through your old blog posts to learn more about Susan, as I am a relative newcomer to your blog. Naturally, digging through the archives, I’ve run across a lot of fun stuff along the way. But I’ve tried to focus on learning the story.
This particular post, addressing the countless well-meaning people that suggest trying something they “heard about” is absolutely outstanding. You very concisely explain what effect it has on you, at the same time being charitable about people’s motives.
We are new to the world of cancer, my husband having been diagnosed only a few months ago, but I’ve already been frustrated (and annoyed, I’m ashamed to admit) by these suggestions. Thank you for saying clearly what must be on the minds of so many fighting the battle. You truly are gifted at written expression.
Nancy in Mpls.