This is My Plan, and This is What I Need
The Runner and I just got back from a little trip to Zion National Park, celebrating our one-year anniversary. We stayed in a little cabin that’s actually inside the park: wood floor, gas fireplace, and a beautiful view.
We went on two runs, two hikes, and two bike rides. And ate ourselves silly. For a couple that loves the outdoors and wants a reasonably-priced, uncrowded romantic getaway, I highly recommend late winter in the cabins in Zion National Park.
What was really great about the stay, though, was that our cabin had no phone (including no mobile phone reception) or TV. I had time to think. And to let my thoughts settle.
And at some point during this trip, everything came together. The Big Idea I’ve had swirling around in my mind — creating a Caretaker’s Companion book and companion website — gelled into an actual plan.
I went from thinking about “someday” to “ASAP.” Because this is the thing I think I can do in my lifetime that will actually make a difference in the world. And I believe my personal and work experience have given me what may be a unique ability to create something that can improve the lives of thousands of people.
And — since I’ve never been one for keeping cards close to my vest — I’m going to lay out what I want to do and the things I need to do it.
And I would love your feedback, because this is still early stages, and I would love to get your good ideas on how to make this plan better and make it work well.
The Elevator Pitch
When you have cancer, it takes everything you’ve got to simply fight that cancer. It falls to your caretaker — a loved one who wants you to give that fight everything you’ve got — to take care of everything else: your doctors, your food, your comfort, your wellwishers, your medicine, everything. And like millions of other people who have been caretakers of loved ones with cancer, I know that the job of being a caretaker can be overwhelming.
It can also, if you know how to approach the job, the most rewarding thing you have ever done.
I want to write a book called The Cancer Caretaker’s Companion. This book will combine the lessons, questions, tips, tricks, advice and inspirational stories from approximately 25 people (including myself) who have been the primary caretaker of a person with cancer.
The wisdom of these caretakers’ experience — gleaned from dozens of in-person interviews — will be combined with the expertise of people who see and help caretakers on a daily basis: oncologists, nurses, insurance professionals, dietitians and more.
By reading this book — and visiting the companion Cancer Caretaker Community website — caretakers will learn invaluable techniques for helping their loved ones during — and beyond — treatment, learn the right questions to ask doctors and nurses, and get the invaluable support and inspiration from others who have been there.
The caretaker has the most important job in the world when they are helping a loved one fight cancer. The Cancer Caretaker’s Companion will help them do that job better and easier.
Why I am the Right Person to Write this Book
There’s no question in my mind that this book needs to be written, nor that there is pent-up demand for this book. For every person fighting cancer, there’s another person giving them the support they need to engage that fight fully.
There are three reasons, however, why I’m the perfect person to write this book.
- I have personal experience. I have lived through the process of being a caretaker. For five years, I was my wife’s caretaker as she battled breast cancer. I have learned hundreds of valuable lessons and want to share them. This matters to me.
- I have professional experience. I will create this book using techniques similar to how I do my day job at an IT research company. I find people to talk with, interview them, extract the key learnings from those interviews, and work with teams of experts to interpret and organize the insights we have uncovered. This will not be a book based on one person’s recollections; it will be a thoroughly, expertly researched book with guidance from both caretakers and professionals, conducted by a person (me) who does this for a living.
- I am a writer. My experience both with cancer and research could make for a tragic book or a dry book, but they won’t. I have experience both as a professional writer and editor, and the style I will bring to this book will be the same conversational style I bring to the blog that has won “Best Sports Blog” (three times) and “Lifetime Achievement” awards. In short, this book will not just be helpful, it will be uplifting and readable.
What I’m Going to Do, and What I Need to Do It
To make this book happen, here’s what I imagine myself doing.
- Complete the first Best of Fatty book. I’ve outlined three volumes for The Best of Fatty. Yes, really. Before I do much of anything else, I need to get at least the first one complete and see if I can get some pre-orders going for it. Why? Because building the Caretaker’s Companion site and interviewing dozens of people in person (for something like this, phone calls won’t do) is going to cost me a bundle. I need money to gather the wisdom this book needs.
- Launch the Caretaker’s Companion site. I’ll need people who are willing to help me get this site off the ground; it will be more sophisticated than a blog. I’ll need help with design and coding, at the very least.
- Assemble a team. While I’ll be writing this book myself, I will assemble a team of people to lend their professional advice, in order to supplement what I’ll learn from caretakers themselves. Initially, I’m thinking an oncologist, a nurse that works with an oncologist, a hospice nurse, a radiologist, a dietitian that has worked with cancer patients, and an insurance professional. But I would love to hear ideas of other professionals you’d like insights from.
- Find partners. I’m hopeful that LiveStrong will work with me on this book — both for finding people to participate, and in promoting the book itself.
- Find a publisher. I’ll need a publisher who has the vision to support this book, long-term and through multiple editions. If you’re with a publisher and you think we’re a good fit, please email me.
- Get interviewing and writing. Once I have the pieces in place, the actual work of researching, interpreting, and consolidating what caretakers know is something I’m good at. And writing is something I know how to do.
I kind of feel like a big chunk of the experiences in my life have led me to this point. I understand an important problem, I have the tools and experience to study and learn how to help others who have this problem, and I am lucky enough to be a good enough writer to tell the stories and give the guidance well.
I have to say, I’m incredibly excited to have a vision of something I can do to make the world a better place.
I can hardly wait to get to work.
Comment by Sara | 03.7.2011 | 12:40 pm
Perhaps http://www.lotsahelpinghands.org would be willing to team up with you.
Good luck.
Comment by Scott R | 03.7.2011 | 12:41 pm
I look forward to watching this journey – and purchasing the eventual fruits of this labor.
Comment by Jennifer W | 03.7.2011 | 12:52 pm
I think that a hospital social worker would be another professional to interview. My best friend passed away from ovarian cancer and I know that she and her husband had regular contact with a social worker who helped them tremendously with all the logistics of battling cancer, especially as towards the end she was hospitalized for the better part of a year. I think your planned book and website are amazing projects that will definitely help many many people in the future.
Comment by Jennifer Sage | 03.7.2011 | 12:56 pm
I cannot imagine a person more perfect for writing this book and creating this website and program. I also imagine that you will find support from all corners of the globe. This will definitely be a fantastic legacy. Way to go Fatty!
Comment by Zeeeter | 03.7.2011 | 12:59 pm
I’d buy the Best of Fatty. Darnit I’d buy the trilogy!
Comment by fult23 | 03.7.2011 | 1:00 pm
I need your help! I have a co-worker that has cancer, and they are trying to take care of everything by themselves. They are fiercely independent, been divorced for 30 years, and their children live many states away. They have friends that drive them to and from appointments, and they have the utmost faith that they are recieving the appropriate treatment. But it is obvious to me and other co-workers that questions are not being asked, and our friend continues to get worse. They try to come back to work, against our own advice and encouragement, only to get so sick that they are forced into absences and further medical attention. This person is my friend and I would like to help. As a caretaker, can you give me any advice to help in this situation?
Comment by Franky | 03.7.2011 | 1:01 pm
Elden,
I am a designer/DTP and have laid out a bunch of books. Let me know if you are in need of my services, free of charge of course.
Comment by Ben | 03.7.2011 | 1:02 pm
A couple thoughts:
1. There is digital publishing these days, where you dont have to have a real publisher to do digital or print versions. These are options to explore, and provide a good starting point. Print books only happen these days for pretty serious print runs.
2. The other thing Id consider in the makeup of the caretakers guide is including a couple of survivors experience in the 25. Let them tell you what they wanted, and what helped them the most during their illness, and how and what caretakers can learn from their patient/loved one. It will give additional perspective and help caretakers to get out of their own heads sometimes.
Comment by Paul Guyot | 03.7.2011 | 1:05 pm
check your email.
Comment by wing-nut | 03.7.2011 | 1:05 pm
Many folks get the help they need and a sympathetic ear from their church or synagogue. I would suggest including a member of the clergy in your list of experts.
Comment by centurion | 03.7.2011 | 1:07 pm
This book and project is sorely needed. My brother-in-law passed away in January of this year, my sister was his primary care giver. She could have used all thet help she could get, a guide from somebody that had been there would have been very helpful. You can be that somebody. Sing me up for a first, signed(ie signed by Fatty for some extra dough) edition of BOF.
Comment by Mike | 03.7.2011 | 1:07 pm
You could try using Kickstarter http://www.kickstarter.com/ to fund the project.
Comment by Charisa | 03.7.2011 | 1:08 pm
Awesome project. It will help many many people.
Comment by Nicole | 03.7.2011 | 1:11 pm
This sounds like a wonderful idea and a great resource. Maybe something like Kickstarter could help in establishing the funds necessary to work on the project.
Comment by Mario Riojas | 03.7.2011 | 1:12 pm
Fatty,
Thank you for doing this.
Mario Riojas
Comment by hannah | 03.7.2011 | 1:13 pm
I think using kickstarter is a really good idea! Given your fundraising track record, I bet you could do pretty well. I also second the idea of including survivors’ experiences in the book.
Good luck! I know that this is going to be awesome!
Comment by Kim | 03.7.2011 | 1:16 pm
Can’t wait to purchase the BoF.
Perhaps a physical therapist. This is an awesome thing you’re doing, thanks.
Comment by Marcia Banta | 03.7.2011 | 1:16 pm
I agree with Jennifer…our Cancer Center social worker is one of the most important pieces of the puzzle for caregivers. Also, the palliative care & hospice team have specific expertise in this area.
While you couldn’t list all the resources in every geographic area, you might give an idea of what a caregiver should look for as well as some of the more obvious national resources e.g. LiveStrong, Imerman Angels, etc.
Comment by Roger Whitney | 03.7.2011 | 1:20 pm
SWEET!!!!
Love your vision and have no doubt of you succeeding.
I’ll help however I can
Comment by cjm | 03.7.2011 | 1:24 pm
I too think using Kickstarter would be a great way to go. Good luck!
Comment by robert orler | 03.7.2011 | 1:25 pm
Great way to pay forward!
Comment by Bethany | 03.7.2011 | 1:33 pm
I work for a head and neck cancer surgeon and here are just some thoughts from what I’ve seen our patients deal with:
1.) Social workers are awesome. They are a highly underutilized resource in the hospitals I’ve worked at. There seems to be a stigma that they are only there to help poor people or people who don’t have insurance, but they can also help with finding community resources that are there for emotional support, not monetary support.
2.) Survivorship. A lot of times the treatment is so focused on beating cancer, that we forget to plan what happens when patients go into remission. Especially in my department, we see patients who go from fully functioning to having severe physical debilatations (loss of speech, trach tubes, peg tubes) as well as physical deformities (removal of jaw,nose,ear,eye,tongue,larynx, etc). It would be nice to see information about how to resume as close to a normal life as possible after such a traumatic experience.
3.) Psychologist who specializes in cancer patients.
Comment by yannb | 03.7.2011 | 1:41 pm
This is a great idea. Also add something for friends maybe. When my friend was diagnosed with cancer over a year ago, we wanted to help in some way but weren’t sure how. Viewpoint from the patient and the caretaker in regards to dealing with friends who want to help would be useful.
Count me in for best of fatty trilogy.
Comment by Whit | 03.7.2011 | 1:42 pm
Let us know how we can help (at least us non-publisher types. You publishers have marching orders!), and how we can order/pre-order your reads …
March on!
Comment by LesleyG | 03.7.2011 | 1:44 pm
I am excited for you! And however I can I will support your effort to get this book published!
Comment by Leslie | 03.7.2011 | 1:46 pm
Great idea and well-thought-out plan…go, go, go! One suggestion: make sure the interviews are inclusive, speaking to people in various parts of the country and economic/diversity spectrum.
Comment by NYCCarlos | 03.7.2011 | 1:49 pm
You’ve got an e-mail from me too… Also, I 2nd (or 3rd or 4th?) the kickstarter idea. Definitely could help you offset publishing upstart costs.
Comment by Philly Jen | 03.7.2011 | 1:49 pm
+1 for Kickstarter.
Comment by Mike | 03.7.2011 | 1:58 pm
Sounds like a very ambitious project, and very much needed by a lot of people. As a survivor, I would love to help out in any way I can. I have experience designing and building a medium sized community website (about 20,000 regular users) in my free time, so I can offer my assistance on that aspect of this project if you need it. Feel free to contact me at the address in the form (I assume you can see that).
Comment by Joe | 03.7.2011 | 2:04 pm
Set up an account (PayPal maybe?) where you can take donations for this project. Then tell us where to go and donate.
Comment by Ripkenfan | 03.7.2011 | 2:08 pm
Fatty,
I love the book idea. My only suggestion for you is to interview those who have been a caretaker for someone who’s gone through the process very quickly, say in less than 18 months, and those who went through it over a longer course of time, such as yourself. My wife lost her uncle in about 14 months. It was tough watching it happen so quickly. Good luck.
Comment by bahama mama | 03.7.2011 | 2:22 pm
Maybe a section on foods that are palatable during chemo.
Comment by Jouni R | 03.7.2011 | 2:27 pm
Great idea Fatty.
Here’s a thought: how about interviewing holistic and/or alternative medicine professionals to see how they can complement the traditional approaches?
Can’t wait for BoF…
Comment by mpres62 | 03.7.2011 | 2:32 pm
I’ll take one of each book. Where do I sign up.
Comment by Beth B | 03.7.2011 | 2:35 pm
This project sounds amazing – there is a great need for this in society. Count me in for a BoF! Goooooo Fatty!
Comment by Gordon In Melbourne | 03.7.2011 | 2:50 pm
I’m definately in for the BOF book/books.
Good one Franky for the offer.
The only kickstarter I know is on my 1971 MV Agusta so I dont think I’m much help (unless you need something chased up in Australia).
Comment by Rich | 03.7.2011 | 2:51 pm
Best. Post. Ever.
Comment by Terry | 03.7.2011 | 2:54 pm
What an awesome idea. This could be invaluable to so many.
Comment by paulscarlett | 03.7.2011 | 3:00 pm
WOW Fatty, simply WOW.
Great Idea. all power to you!
Comment by Bee | 03.7.2011 | 3:02 pm
Chaplains! How about a hospital chaplain? (or hospice)? Parish clergy are great, yet many chaplains have done a great deal of additional work and have some great insights and expertise around spiritual, emotional, and family care. (Even for people who aren’t “religious”.) Some parish clergy have that sort of background, but most don’t. I would recommend you talk to a board-certified chaplain for the most professional view possible.
Good luck! What a marvelous gelling of an idea.
Comment by Heber Chad | 03.7.2011 | 3:48 pm
Fatty,
Don’t forget the Huntsman Cancer here in UT, I bet they could be a great help!
Cheers
CB
Comment by Elizabeth | 03.7.2011 | 3:58 pm
I second the wish for advice for friends. I supported my best friend as she cared for her husband through 2 1/2 years of colon cancer. For everything from hotel roomate during hospital stays, to cleaning toilets, to making lunch for him because she had to work, to funeral planning, I was there. But so many other friends said they didn’t know what to do or how to help. Some people struggle with where to jump in and it’s an additional burden to the caretaker when people ask what they can do to help. Practical advice for those who want to help but can’t figure it out would be great.
Comment by Fat Cathy | 03.7.2011 | 4:10 pm
I do backend programming for websites for a living. I’ll be happy to donate my time to help out with the website.
Comment by Ellen | 03.7.2011 | 4:21 pm
Fatty,
This is a great idea. I have been thinking of doing something similar but for a younger age.
My first husband died when I was in my 30’s approximately. He was 53. When I was reading all the material out there there was NOTHING for a younger person. How do you deal with house payments, readjusting your life…etc The list goes on. So I would include something or a section of kids since cancer seems to be hitting this age group;(I do not know why.)and a section on the younger cancer caregiver. There is a lot I could say and a lot I hope would change as a result of my experience.
Also, about a year after my husband died my stepmother died of pancreatic cancer, so unfortunately I am all too familiar with death and dying and dealing with cancer.
Let’s kick its butt.
Comment by Whitney | 03.7.2011 | 4:22 pm
I am excited for you as you go on with your book writing journey. Unfortunately I don’t have any resources to offer you other than my support and well wishes. Good luck!
Comment by Yukirin Boy | 03.7.2011 | 4:29 pm
I am excited by this also. I think and believe you an do a magnificent job and help many more with this project.
Good luck.
Comment by Herb | 03.7.2011 | 4:48 pm
I used to work with several Radiologists, one of whom is battling a current diagnosis of cancer. He might be willing to assist you. Shoot me an email if this is something that might work for you and I’ll put the two of you in contact with each other. He’s a great guy and very friendly, and someone I would trust to read images of my wife and kids if it came to it.
Comment by Dunc | 03.7.2011 | 4:50 pm
May God bless you and this whole idea. Very exciting. Allez Fatty!
Comment by Ben Egan | 03.7.2011 | 5:04 pm
your drive is the most inspiring thing to me here.
i’ll preorder a book just so that i can see this book come out.
go get it. thats a great thing to do.
Comment by Martin | 03.7.2011 | 5:17 pm
Go, Fatty, go! What an inspiring endeavor!
Comment by Mike Roadie | 03.7.2011 | 5:46 pm
Awesome, awesome, awesome idea!
And yes, Kickstarter is the way to, well, kick start it!
Comment by Jenni | 03.7.2011 | 5:48 pm
When do we start sending money? I’m in.
Maybe Livestrong has grant funds to help?
Comment by Lisa | 03.7.2011 | 5:53 pm
Magnificent project. As a friend and non-primary relative of people who have fought cancer, and either lost, or won, I was really looking for resources and wanted to know what I could do. You really feel helpless.
I have some publishing resources for you that I am sending to your email with the header “publishing resources”. I am not quite clear if you are trying to self-publish or want to pursue the traditional route. The industry is in great flux, but it seems to me that your book merits traditional publishing because it could be purchased by hospitals or foundations as well and distributed for free.
Comment by JodieA | 03.7.2011 | 6:28 pm
We have a person called a Patient Navigator at the hospital where I work who does things above and beyond what the social workers do including setting up appointments and arranging transportation for those who can’t afford it. Here’s a link: http://trumed.org/truweb/hh/hh_health_services/hh_oncology.aspx If you are looking for a fundraising idea, you might look at Pepsi’s program called Refresh Everything. http://www.refresheverything.com/ They have different levels of awards, but the basis of it is you have people vote for you and the one with the most votes gets the money. We tried to use it to get money to upgrade the delivery rooms at the hospital but a school won for something a little more exciting. In your case, I’m pretty sure you could muster enough support to get the win, especially for such a great cause and idea. I’m definitely looking forward to reading anything you publish (although that might be dangerous).
Comment by Molly | 03.7.2011 | 6:35 pm
Wow. What a fantastic idea, I have to say.
I’m fairly young, 23. I figured I had (at least the majority of) life figured out this year. I had gone to school, dropped out because I started working in the cycling industry, moved across the country, held numerous jobs and even a few long term relationships. Then my healthy, nutrition-conscious, 58-years young mother Evelyn was diagnosed with stage 3 ovarian cancer.
Since then, I’ve found myself struggling with how to cope, comfort my relatives (namely my father and brother, who have been stuck in a state of shock since December), and care for my mother. There’s resources online, but mainly from the perspective of the patient. I know your experience with Susan was painful, but I look forward to seeing something beautiful come out of it.
Comment by John Paul Daigle | 03.7.2011 | 6:37 pm
You can publish the first best of fatty book through lulu (http://www.lulu.com/), if you are interested. And kickstarter is definitely the best source for developing your project.
Comment by Pam Huang | 03.7.2011 | 6:40 pm
I think that you have a great idea! As a pediatrician, I’d be interested if you would be able to include the effect of a parents illness on children and perhaps the needs of the caregiver when the patient is a child. Good luck in your endeavor!!
Comment by Kate | 03.7.2011 | 6:43 pm
What about also making a shorter (pamphlet-type) thing once the book is done as well that could be distributed in hospitals?
I’d certainly be willing to pre-order a coupe books!
Comment by Laura S | 03.7.2011 | 6:52 pm
You are hands down the best person to write this book. It will be a great help and comfort to a lot of people out there. Thanks so much for doing this. I’ll be buying it and recommending it to everyone I know with a loved one with cancer.
Comment by stuckinmypedals | 03.7.2011 | 7:16 pm
Happy anniversary, Fatty and the Runner! Wow, that sounds like some epiphany cabin! I can’t wait to buy the BoF and I hope I never need the Caregiver’s Companion. Having said that, I think it’s an important book that must be written and it must be written by you. Fatty, you just make me more and more proud to don my FC jerseys.
Comment by Squirrelhead | 03.7.2011 | 7:41 pm
It is awesome that you are amped up and ready to go all in on such a worthwhile project Fatty! I agree that Kicketarter is a great place to go for funding. I am in for a few copies of BoF!
Comment by Spiff | 03.7.2011 | 7:45 pm
People need this. My family could still use this resource. After losing my cousin at 47 to cancer many are still dealing with the aftermath of trying to care for him at his home. They did so much but were not prepared for how it would end. Thank goodness we had each other throughout.
As a possible resource, I might suggest an oncologist here in Canada (Toronto) at the Princess Margaret Hospital, Dr. Robert Buckman. I have heard many interviews with him and he has a sense of humour, passion and compassion for those coping with cancer that goes beyond medical treatments.
Comment by Spiff | 03.7.2011 | 7:46 pm
oops forgot the link
http://www.drbuckman.com/
Comment by Spiff | 03.7.2011 | 7:47 pm
http://www.drbuckman.com/
Comment by Lime Crush | 03.7.2011 | 7:47 pm
Sounds like something that will make a big difference for a lot of people. I told you a while back that I edit and write for a living, and that’s still true. I’m working with my boss on his book at the moment, but if you’re interested in having another set of eyes on a chapter or two in the future, let me know, will you?
Comment by Linda TP | 03.7.2011 | 7:49 pm
I love the idea. I would suggest a ‘quick read’ format since caregivers do not always have the time/energy to read. Also agree that a section for the caregivers support group would be beneficial.
Comment by Darcie | 03.7.2011 | 8:10 pm
This is a superb idea, and a much needed project. I’m an emerg doc, and I’d love to see some input from one of us. Visits to emerg are very stressful at any time, but so more so when you’re frantic your loved one is about to die that many useful and important bits of information get missed or forgotten. A guide for what to bring with you to emerg, and how to best communicate with the arrogants SOBs that we all can be would be invaluable.
Also, if I may be so bold, I’d like to suggest you consider each chapter as a stand alone. That way, when the caregivers brain is spinning and they’re needing help, they can turn right to the chapter that applies to their current issue and get the help they need.
Thanks for caring.
Comment by Kari Albano | 03.7.2011 | 8:30 pm
I will be happy to answer any questions I can on childhood cancer and while I am no professional in any sense, I do have a unique view that may be helpful to you. I have seen it from three views; as a patient, as a witness as my mother was caregiver for her own mother, and I also worked for several years in several different positions for a camp for childhood cancer patients and survivors, including as a counselor, doing things like answering the questions and countless “why’s” that these kids are scared to ask even their own parents, but opened up to a fellow member of the cancer community, or what it is like to them and their families to take special precautions for their catheters of various kinds, the list can go on and on. Email me if you want, I would be more than happy to help.
Comment by david | 03.7.2011 | 9:14 pm
Please, don’t just limit it to cancer patients. Caregivers of all kinds need help and advice. I’ve been taking care of my chronic pain/renal patient wife for several years now and it’s a major effort to not just go mad.
Comment by Stephanie | 03.7.2011 | 9:36 pm
I would suggest maybe extending your book outside of the cancer network and include other terminal illnesses. My Aunt passed away from Lou Gehrig’s (ALS) a few years back, and her daughters were her constant caregivers and would truly benefit from a book with this type of information.
Comment by joel e | 03.7.2011 | 9:41 pm
Incredible project that can help SO many. I lost my brother (26) to cancer. I helped my parents (small part) in some basic care taking and wished I could have known how to help more. My mother is a nurse so medically she knew how to help but as many before have stated, a social worker is invaluable. The “outside” of a family view really helped my brother in making decisions and that helped relieve the burden of bringing up the end of life discussions that were necessary. The conversations happened but it was more on my brother’s terms.
A useful tool that may be easy to include would be some sort of doctor organizer list/spreadsheet. My mother used solid college note taking skills and a nurses charting ability (NOT computer savvy though) to manage it all but there has to be an easier way to keep all the doctors in order. Especially seeing how critical it is to keep them all on the same page so NOTHING is missed (pain control, diet, etc.).
YOU ARE AN INSPIRATION!
Comment by WaywardScooterGirl | 03.7.2011 | 11:42 pm
I would echo the suggestion for some sort of mental health professional as one of your resources. Perhaps a psychologist or counselor who specializes in helping families and caregivers cope with their own complex emotions while caring for a sick/disabled family member or friend.
Comment by Deano | 03.7.2011 | 11:42 pm
Fatty- I lost my dad to cancer last summer as well as an uncle to cancer several years ago. I’ve been a loyal follower of for the past couple of years. I have a personal interest in your quest an I’d love to help- and may be able to do so. How can I get in touch with you personally? You may email me if you’d like.
Comment by Dani | 03.8.2011 | 12:42 am
I love your idea. I have only been following your blog for a week or so, but it seems to me that you would be a great candidate for this wrting project. I have one question. You stated you would get input from other caretakers as well as Doctors and other professionals. What about getting input from Cancer Fighters/Survivors? I am looking at this from my own point of view as a FIGHTER myself. One thing that pops into my head immediately is convincing well meaning family when I REALLY need them. For example, my mom (wanting to basically move in) was coming to town everytime I had a treatment. I tried telling her repeatedly I needed more help on days 4,5,&6 after treatment. It took her until the very end of treatment to get the message, and I had to push it by changing the days I had Tx so she was coming on days 4, 5, and 6. It got tiring. Just thought it might be worth getting input from the people who are being taken care of. Looking forward to future posts and the book.
Fighting, in Alaska
Comment by Anonymous | 03.8.2011 | 3:07 am
as Mike suggested, Kickstarter is definitely the way to go! I’d support the venture.
Comment by Cathy | 03.8.2011 | 3:19 am
Fantastic idea and you’re the perfect person for the project!
A few thoughts…
Consider whether the scope of the book includes caregivers for children with cancer or not. Normally, this is a parent, obviously, but not always. I volunteer supporting families where a kid has cancer and know that the challenges in that situation are about 75% the same as caring for an adult, but also different in significant ways. I think you either need to address it head on and have some kid-specific areas or start by a disclaimer that it doesn’t address it and that’s a “V2″ version.
Please also consider the work of a caregiver when the ultimate result is remission / healing. It was surprising to me to see how different the needs and experiences of a family with a survivor are, from one that loses that precious soul.
Thanks for taking this on! It’s definitely needed!
By the way, I also spend my days as a s/w developer working in online services at a certain large company in the Northwest that you might be familiar with, so feel free to add me to your contact list for help with the web site.
Comment by Patrick | 03.8.2011 | 4:02 am
Second the paypal idea, I can’t offer any professional assistance but I’d be honoured to donate to the cause.
Comment by Anon | 03.8.2011 | 5:11 am
Bloody hell ! I am awestruck by two things 1. Elden’s passion and drive to convert the dream into a useful, helpful outcome and 2. All you other people who have never met and yet are prepared to help.
Be happy for there is also love and kindness in this world.
Comment by lorianne | 03.8.2011 | 5:57 am
Excellent project!
Comment by Anne-Marie | 03.8.2011 | 7:03 am
Go, Fatty, go!! Great idea and I know you’ll make it shine. Agree with the paypal idea. Worthwhile ideas like this take all sorts of contributions. Good luck!
Comment by Chris | 03.8.2011 | 8:12 am
My brother’s wife got breast cancer in her late 20’s and she recieved what seemed like hundreds of phone calls offering her support. I know they were both very thankful for that. The one that stands out was from a man that lived in the same town as us, who we didn’t know. He called one night to speak to my brother and after he hung up he was in tears. I asked what was wrong and he said this man had called to offer my brother support because while his wife was sick there would be a day that he’d feel the weight of the world caring for her and he’d need support as her caregiver.
Thank you for putting this together.
PS,maybe you could talk Lance/Johan/Trek into donating some cool swag to kick off a book fundraiser. Last time you guys teamed you raised a small fortune.
Comment by Keith | 03.8.2011 | 8:30 am
IF you are in Boulder in your travel plans, I should set you up to talk to my wife. As a former medical professional, she took care of her sister during her battle with cancer. Keep her out of hospice and did the best for all during the battle. Could provide so good ideas. Let me know if you come over. Keep up the good work.
Comment by Amy | 03.8.2011 | 9:09 am
Fatty- I have read your blog for all the reasons others mention: your humor, your insight, your compassion, and your passion.
The other reason I read your blog is that you might, in fact, have the most phenomenal readers/commenters ever. So often I am struck by the fact that at times, they are as funny, and insightful, and compassionate, and passionate as you are. Thank you to all of you.
I also would like to second the idea of utilizing some of the great folks at Huntsman Cancer for interviews. The folks there were unbelievably supportive and knowledgable when I had to be there for some treatment.
This is an awesome idea, and overwhelmingly needed. I can’t wait to buy the BOF. Best of luck!
Comment by swimbikemom | 03.8.2011 | 9:34 am
Fatty,
This is a fabulous idea-thank you for doing this! I would like to recommend getting in touch with a home health nurse as well…being a home health nurse we come into contact with not only cancer patients and CGs but many other chronic conditions and their CGs. I know many of my patients would love an informative and funny resource…and you are the perfect man for the job! If you would like to tap my brain about anything please let me know. I would be happy to share any experience or ideas that I have come across in my profession that I love and and patients that I care very much for! Please let me know if I can help! Good luck!
Comment by Eric T. | 03.8.2011 | 9:58 am
Another option you might consider for funding the project is to form your own 501(c)(3) chartiable organization so that you could conduct a tax deductible fund raising drive for your own project – like you have done for Livestrong, World Bicycle Relief and others. Given you track record I suspect even one contest would be able to give you all the seed money you need to get the project up and running and staffed. I am a corporate attorney and would be willing to help you work through the Form 1023 application process if you like – and as someone who has also lost a loved one to cancer, I fully endorse this project. It would have been great to have this kind of a resource when my Mom was going through her battle.
Comment by SYJ | 03.8.2011 | 10:26 am
I would second Eric T’s advice above, or in the alternative, at least create a separate entity (LLC if you choose not to go the 501(c)(3) route) to compartmentalize the financial inlay/outlay and any potential liabilities for this project. The process is quite easy, and like Eric, I’m a local attorney who would be only too happy to help out with this process.
SYJ
Comment by Tina Z | 03.8.2011 | 10:48 am
Apply for grants to fund the research! Seriously, you might get funds to conduct the research. If you haven’t already, search for grants and write a few grant proposals.
Include a chapter, or at least a small section, on the caretaker taking care of themselves, written using advice from psychologists. I would also include a psychologist in your expert panel. Perhaps a professor of psychology who has done research on this topic, find them through academic journal index sites. Those same journals might also help your research in other ways, too.
Comment by Eva | 03.8.2011 | 10:55 am
Yes to this awesome project… You go, Elden!
I’d like to suggest a book reference where you can find some interesting insights on the caretaker role and a letter to the caretakers. It is “Grace and Grit” by Ken Wilber… The book is broader than just covering caretaking… It is the whole poignant story of the breast cancer, treatment and death of Ken’s young wife narrated through the journals of both of them… There are metaphysical chapters too… but again insightful views on the caretaker’s role.
Comment by briebecca | 03.8.2011 | 11:13 am
I am a software engineer in Denver with web, middleware, database programming experience so feel free to recruit me to help out with the web site. My mom had cancer over 20 years ago and such a book or guide would have been quite helpful for my family. We had no clue how to help other than to attend to my mom’s immediate needs.
Comment by Elisabethvi | 03.8.2011 | 11:22 am
I’d pre-order at least a dozen books. Kuddos to you for taking action on your Big Idea! You’ve got my support.
Comment by Jeff in DC | 03.8.2011 | 11:59 am
Well, after years of reading, laughing, and sometimes crying, I’m finally posting.
Fatty, please make this happen. My mother is currently the caretaker for her partner who fought breast cancer once but is now fighting it again, and it has metasticised to her lungs, bones, and brain.
My mother has overcome many obstacles of her own, but she’s never done anything as challenging and draining as caring for her partner. Reading about Susan’s fight and your support was truly inspiring. But when things hit close to home, and there’s no fighting spirit, it just stinks.
Please let me know were I can send the check.
Comment by davidh-marin,ca | 03.8.2011 | 12:17 pm
My wife says I may not volunteer her for this task, and I am seriously old schooled.
There is probably someone in TEAM FATTY who could create a Wiki site for everyone to access and organize our suggestions. An old fashion outline of Professionals, Grant Sites, Publishers, and story contributors. Elden has admitted in the past that organization is not his forte, but with four kids of his own and now 5 I am suspect. Still, for a project like this, Mr Awesome could use a team, and I think we should be there for him. Where do I send my check? (oh! we don’t use checks?
Way to go Mr. Nelson.
Comment by Alice B. | 03.8.2011 | 1:11 pm
This is a FANTASTIC idea, and I think that you definitely have a great start to your outline and strategy. While I do not have any advice to offer, I do hope that you are able to go ahead with this as I would definitely purchase a copy of your book. My sister is currently awaiting news from her doctor about the tumor cells they found in her blood; they suspect colon cancer, and they suspect it may be fairly advanced. She’s only 29 years old. While I may not be her primary caregiver, any thoughts, tips and help you may provide through your book will certainly help all of us and the countless others out there who are battling cancer directly and indirectly.
Comment by Haven (KT) | 03.8.2011 | 1:17 pm
First off, I like your honesty. And I’m in for a Best Of book– all three, as you get them done, because I don’t like unfinished series on my bookshelves.
Second: What a great project. I have no skills I can lend to your book or the research or the behind-the-scenes work, but I can give one piece of advice: Before you create a 501(c)(3) or LLC, please meet with a qualified tax professional and discuss your options. With the 501(c)(3), there are some hoops to jump through and some regulations that are rock solid and unbending. With an LLC, you may find yourself as a disregarded entity unless you set it up correctly. Tax lawyers are great, I guess, but will charge you lawyer-rates.
Third: May I recommend tapping that same tax professional about what needs to be done, tax-wise, by the caregiver both during the caregiving and afterwards? Sometimes, dealing with all the work of taking care of someone eclipses the need for things like wills, estates, etc. And, medical expenses can be deducted from tax returns, a competent tax professional would be able to give advice on that. Or at least, include a blurb about the need to involve the tax preparer in the process.
(I’m the payroll department at our full-service accounting firm and we’ve had several clients dealing with cancer; we try to make it so the family doesn’t have to worry about taxes and all the things associated with taxes.)
Comment by Darth Vader | 03.8.2011 | 1:34 pm
Why not talk to Livestrong and see if Lance can assist you with such a great idea. Lance Armstrong, are you listening or reading? Lance? Where are you? Your friend has a spectacular idea.
Comment by L'Hippo | 03.8.2011 | 2:01 pm
Go man, go!
Comment by Jim Crider | 03.8.2011 | 2:12 pm
I know a couple folks who would be good contributors. One is going through the primary-caretaker thing with her 11 year old son who is now in remission with ALL; She’s also a runner and (how life can be ironic sometimes) has done Team-In-Training marathons to support another ALL patient (who is now cancer-free).
I will gladly put you in touch.
And YES! This is something that needs to be written. As for publisher, this is something the LiveSTRONG folks may be able to help with, as it would be a fantastic addition to their resource arsenal.
Jim (the even fatter cyclist)
Comment by Dan O | 03.8.2011 | 3:13 pm
Fantastic idea. Without a doubt – do it.
Comment by Jamie Rasmussen RD | 03.8.2011 | 3:47 pm
My husband linked me in to your blog. He is a frequent visitor to your site and is excited about this new project. I am a registered dietitian. I worked with oncology patients at the Greenbaum Cancer Center in Baltimore. I am, by no means, a complete expert but I would love to help with your project. Please keep me as a potential contributor! Best wishes!
Comment by Tom Fort | 03.9.2011 | 8:27 am
Fatty-
Have you considered self-publishing? Cheaper and faster than trying to go through a traditional publishing house. I’ve read it’s very easy on iBooks, but it shoudn’t be hard for other services either.
See these:
http://www.macsimumnews.com/index.php/archive/gregs_bite_how_to_publish_an_apple_ibook/
http://www.tuaw.com/2010/08/12/how-to-publish-an-apple-ibook/
http://news.cnet.com/8301-13579_3-20014845-37.html
Good luck-
Tom
Comment by CDit | 03.9.2011 | 9:36 am
As a caregiver who works at a hospice, I think this type of thing would be a valuable resource for the families of my patients. Good for you for doing this. I can’t wait to see the result. If there’s anything I can help with, do let me know.
Comment by Dave | 03.9.2011 | 8:44 pm
My wife has been battling ovarian cancer for 16 years now. I’d love to read something like this.
Comment by beth | 03.9.2011 | 11:24 pm
Ask Lance for a forward or cover blurb. I know you’re in the planning and research phase now, but thinking about the end product, a Lance or Livestrong endorsement or forward or even some written contribution, if he’s willing, would go a long way to guaranteeing it’s taken seriously and funded, although I have to think we can fund raise you to this as a community. Also look at online publishing, ebooks and the digital formats. More and more folks are going that route and it would reach a bigger audience faster, especially outside the US. 28 million patients means double to quadruple that in caretakers minimum and that seems a key target market when you’re pitching this. Much needed, important and well appreciated project…thanks.
Comment by Mike/Kamala | 03.10.2011 | 2:42 am
I would think you’d want a trusts and estates attorney as one of the professionals on your team. In law school I did work on end-of-life documents for folks with HIV/AIDS. Things would have been much easier on the folks who were in the end stages had they taken care of wills, kids, care directives, etc long before they started to lose their faculties. The need to address these legal issues is particularly keen for young folks who have zero documents when they get the cancer surprise.
Comment by Jessi | 03.10.2011 | 7:02 am
this is a great idea! can’t wait to read about the process and see it come to fruition!
Comment by Sharon | 03.10.2011 | 9:01 am
I suggest you hold off on your search for a traditional publisher and consider publishing the book yourself. You will be the book’s strongest salesperson. You can sell through your website and those of any partners you develop. You can hire an editorial/designproduction team to make the book the way you want it to be. You can line up a distributor to get it into stores and a publicity person to help get the word out. And you won’t have to share the income with a publisher.
Comment by NJS | 03.10.2011 | 11:18 am
My dad was diagnosed with brain cancer in January 2010 and passed away September 2010. Through the eight months of treatment, primarily my mom and I provided his care. Here are some suggestions based on our experience.
*How to delegate tasks that the primary caregiver no longer has time to do, or what people can do to help the primary caregivers. My family all wanted to help, but not everyone could help my dad directly. My mom and I often found it difficult to find ways for them to help and lighten our load. We didn’t want to share the medical care part of it because we didn’t want to get any of it confused. His treatment plan was not standard, so sometimes we had to correct the nurses in the cancer center to make sure he received correct treatment.
*Some sources that may be helpful, though they are specifically for brain cancer. These pages were immensely helpful and provide good ideas of topics to cover:
http://www.abta.org/Care_&_Support/Orientation_to_Caregiving/227
http://www.abta.org/index.cfm?contentid=34&itemtype=2
*Power of Attorney, medical and financial; Advance Directive; Will; Living Will
*Organizational tips (scheduling, drug dosage and names (some have several names), what each drug is for, quick reference phone numbers, etc.). It took my mom and I a while to figure out what kind of organization worked for us. The beginning was rough because we had to explain to my dad several times what his treatment plan involved. If we gave slightly different stories, he got very worried that he would not get the right treatment.
*Caring for the caregiver. Taking care of a cancer patient can consume a person’s life and burn them out. A caregiver has to be ready for the long haul.
Comment by tang2011 | 03.14.2011 | 11:46 pm
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Comment by Tim | 03.14.2011 | 11:51 pm
Hey Fatty,
Just a question of semantics in terminology. Is “caretaker” the commonly used name for this task in USA?
Here in Australia, a “carer” is a person who provides support to a sick or disabled person; a “caretaker” is like a janitor or night watchman.
My wife is full-time carer of our profoundly disabled daughter; she’d be quite confused if I referred to her as a caretaker.
I see some previous comments the term “caregiver”; that may be a better option for the title of your book.
Good luck with it,
tim
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