I posted this at my blog but am sharing it here because it’s the best way I know of to thank those who contributed to the fundraiser Megan organized on my behalf last week. A Little Acorn will show up at your Inbox next weekend, and it’s going to be a fun one!
When Megan Fitzpatrick mentioned that several people last Saturday had asked if there was any way they could help, given my current experience with pancreatic cancer, she suggested she could put together a fundraiser for medical expenses. I was touched – truly – both by readers’ offers of help, and by Megan’s readiness to set something up. But I had to give some thought to my response.
Asking for help is not one of my strengths. Even accepting help that’s offered is sometimes hard. I recognize the importance of reciprocity. It’s great to be one of those people who give and give and give, but you can only give if others are willing to receive. And at some point, those who are unwilling to receive are missing out on a good chunk of what life is about. So I am trying, believe me (and please don’t say, as my first husband used to, “very trying”).
Second, while I often contribute to fundraisers, I find the whole fundraiser thing a challenge sometimes. Who wants to be seen as needy, or a victim? I know; this is another problem I have to deal with (one of many). Asking for help, or accepting it, does not a victim make. But some people have given online fundraisers a bad name. And the idea that many people in America rely on fundraisers to cover the cost of life-saving medical care drives me nuts. I lived in England for 16 years, and while the National Health Service was (and remains) far from perfect, single-payer healthcare beats the heck out of potentially losing your home due to medical expenses. Also, it’s not news that the American healthcare system, too, while technologically awe-inspiring and peopled with professionals who are the embodiment of patient-centered service, falls far short of ideal, especially in its financial dimensions.
Finally, it’s not news that we’re in the midst of a raging pandemic that has cost millions of people their livelihoods. Yes, I have cancer, but all in all, Mark and I are in better shape than many, with paying work that each of us can do safely during this time, which added to my difficulty in saying “yes, thank you, let’s do it!”
I want to make sure people know that Mark and I have health insurance. While we have friends who don’t, both of us have made a point of paying for coverage since long before we even knew each other. As I explain in an upcoming blog post for the Pro’s Corner at Fine Woodworking, I bought my first health insurance policy in 1995 when I saw how much a client of mine, who had excellent healthcare coverage, had to pay out of pocket to fix his broken foot. His out-of-pocket expenses could well have put my then-new business out of commission, and we all know that those who work in the building trades are at higher risk for work-related injuries than most who work in offices.
Mark and I are both self-employed. Paying the health insurance premiums has often been a stretch, especially for me, but we’ve considered it no less important than paying our mortgage. Finding the right balance between affordable premiums (if $845 a month per person can be described as “affordable”) and coverage in case of a claim has also been a challenge. Like many of our self-employed friends, we chose our policy, paid the premiums and hoped we’d never have to use it, beyond the reductions it provides in charges for prescriptions, wellness scans and such. As it turns out, our high-deductible HSA-linked family policy will cost us $24,800 this year in out-of-pocket expenses before our “coverage” kicks in. Yes, just having insurance coverage is an enormous help – as we’re now learning, the basic charges for anesthesia, chemo and all sorts of related care are astronomical. But in a year when our income will already be seriously reduced due to changes we’ve made in how we work, thanks to the pandemic, forking out $25,000 (or, let’s be realistic, likely more) would hit us hard. Were we not living in Covid World, things would be at least somewhat different – I wouldn’t hesitate to take friends up on their offers of rides to the hospital, and Mark could be working more closely to normal. But with a significantly compromised immune system, it would be foolish for me to get in a car with anyone else, which has disrupted Mark’s work far more than we anticipated. In fact, it would be more than foolish. It would be irresponsible and ungrateful, considering how many people have already helped us out.
After mulling all of this over, I said yes to Megan’s generous offer of help. I had no idea how many people would respond, nor how quickly. I’m still in shock.
To each of you who have contributed, I am grateful. My gratitude is not just a feeling. I plan to express it concretely, in the following ways, as well as others:
First, I promise to do my level best to beat this disease. Life expectancy for those with pancreatic cancer is depressingly low, with two years generally cited as the outer limit. But every week, friends introduce me to others who have lived much longer. Of course, prognoses depend on all sorts of variables; as people tell me constantly, every tumor is different, and the side effects of treatment can also kill you. Beating the odds will take more than standard medical care, and your generosity will make it possible for me to augment the standard chemotherapy, etc. with integrative protocols. While these cost far less than the medical “standard of care,” they are not covered by insurance. Even before the last 24 hours I was feeling optimistic. Now I feel even more so.
Second, I will share everything I learn, in the hope that this information may be helpful to others. Hence my upcoming post about the importance of being informed when choosing health insurance coverage.
Third, I’m hard at work on “Shop Tails,” a new book for Lost Art Press. I didn’t want to mention this early on, as I had no idea whether I would live long enough to finish it – in late-November, the specialist in Indianapolis had given me four to six months if I didn’t pursue chemotherapy, adding that there are two chemo regimens, and fewer than 50 percent of pancreatic cancer tumors respond to either one. Crushing odds. When I was struggling with the decision whether to pursue chemo (for so many reasons, the cost and the odds among them), I realized that if I went ahead, I would need a concrete goal to power me through. I wrote to Chris Schwarz on a Saturday morning, asking whether he might be interested in publishing a book about animals, life and work. I made sure to include a note along the lines of It’s fine to say no. This is not “Give me a contract or I’m going to die.” He wrote back with a strong YES that afternoon. Another reason why I am filled with gratitude — and having a far better time right now than I would ever have expected.
So, for now, thank you. Your support has me feeling far more appreciated than I had any reason to imagine. I am endlessly grateful to Megan, Chris and all the others – editors, publishers, clients, relatives, friends – who have provided me opportunities to do work I find meaningful.
–Nancy Hiller, author of “Making Things Work” and “Kitchen Think“
27 thoughts on “Thank you”
Hallo Nancy. Thanks a lot for this reply. But always remember : everybody gave free, without any expectation. So, focus on your health and your projects, everything else will adjust. We enjoy hearing from you every time you can manage it, but don’t put pressure on yourself in any way. Can just speak for myself, but I think I am not alone with this thoughts. All the best, Alexander
Yes Andrew you are correct…many of us share your sentiments.
Agreed Alexander. Please take care of yourself Nancy. Pascal.
Best of success to you. You and all others will remain in my prayers.
I am a retired hepatobiliary surgical oncologist (and a hand wood worker). Many friends and colleagues ask me for advice in this situation. For what it’s worth I tell them. Medical oncologists take their best shot first. if there is no objective response after one cycle on imaging, stop. Focus on pain control. Spend quality time with those you love. Jeff
As a research scientist in the area of cancer Immunology, I would say that if the current standard of care doesn’t work – that is likely radio/chemotherapy – you might want to look into clinical trials involving immunotherapy that are enrolling patients at IU. Eligibility typically is for patients that do not respond to standard of care. Many of the current trials are for antibody treatments that work in other cancers, like melanoma, that haven’t been FDA approved for pancreatic cancer. They can work really well in some patients – like complete remission – and the side effects tend to be less and different. While the response to cancer immunotherapies is more variable than radio/chemotherapy, the question is whether they work for you. While there are some indicators in the research world that suggest a response, in reality, you won’t know that until you try. The new cancer director – Dr Kelvin Lee – at IU is a cancer immunologist. Hope that helps.
Thank you for this. Fortunately (touch wood), my tumor is responding to the Folfirinox regimen, and as of yesterday, my CA19-9 level is at 28 after just three chemo cycles, the upper end of “normal” being 37. I’m collecting all relevant information, so this note about Dr. Lee is helfpul.
Fortunately my tumor appears to be responding well to Folfirnox. The CA19-9 level has dropped from about 140 (which is not that high) to 80-something, then 57, and yesterday, it was at 28, within the realm of “normal.” So I’ll be staying the course while adding some protocols from the world of integrative oncology.
I’ve been sitting here for 20 minutes, trying to think about what to say. I got nuthin. I keep thinking about all the little ways you’ve made our lives better. And about how I wish life was a little more fair. Or, at all fair, I guess.
Take good care of yourself. If there is anything anyone can do, just turn your damn brain off and ask.
Thank you so much, John!
Being self-employed, on a similar-sized income, having an eerily similar high-deductible policy, and looking at surgery for a foot injury (is there an epidemic?!?), I can still but barely imagine the mountain before you. Having also some experience with (real-world) mountains, however, I will offer this: When it gets especially tough, remember—even the greatest mountaineers go up one step at a time. Also: even if you don’t quite reach the peak, remember to enjoy the view from the path life has put you on, and which you have chosen to travel your way—and for the love of all things good and beautiful, do it your way!
It’s a funny thing about life: Nobody gets out alive. And though someone might offer a sell-by date, it’s still pretty much a crap shoot as to when the milk will turn sour. But if the Fates insist on turning your world upside-down and dark, do this to piss ‘em off: Smile at a loved one. Play with a dog. Raise and release a butterfly. Sing. And when in the mood, give the heavens the finger. Then laugh.
Our contributions are small things that, we all hope, together will combine to make a difference for you. Please remember that there are no expectations of you on our end. This is just us giving the Fates the finger.
Well put! Thank you so much.
Thank you for sharing your journey your strength is an inspiration
Reciprocity is overrated, and gratitude as the basis of attitude does far more for each of us.
Thank you Nancy for allowing Megan to initiate a GoFundMe benefit. Thank you for allowing a lot of us to be a closer community.
Many years ago a friend of mine could use help with expenses for a bone marrow cancer treatment. She had mixed feeling about accepting the help of a medical benefit when I offered to set one up. To help her get on board I told her that allowing a benefit was a way of creating and encouraging community, that without someone being willing to be a recipient there could be no community to respond. She accepted having the benefit.
People’s level of generosity when they heard about the benefit was a surprise. Business owner’s level of generosity when I asked for donations for a silent auction was overwhelming and in the process I became a much more generous and thoughtful person. Putting together and attending that benefit was a life altering experience for me.
Some years later when I was dealing with a cancer diagnosis the recipient of the benefit I had put together asked if she and a friend could arrange a medical benefit for me. I had only heard of benefits locally given for women and all of them were in greater need than I felt. I was reluctant. They reminded me of my words about a benefit creating and allowing community to be truly community. I thought of my child who was ten years old at the time and the world they were inheriting, the world I was helping to create, the world I would define as present. I stepped into a world where men too could be the recipient of a community’s support, into a community where giving and receiving are one.
Wonderful. Thank you so much for this encouraging and thoughtful observation. And I cannot wait to see your forthcoming book!
Thanks for letting us help. I too lived for many years in England and saw the NHS in action before moving back to the US to a beautiful but economically “challenged” region in the midwest. Before this past year I thought my head was going to explode if I had to go to another benefit concert for someone in terrible financial hardship over medical issues. Now I’d welcome the opportunity. There are many wonderfully talented and dedicated medical professionals in this country, but the system they work in exists, as my brother says, to take your last dollar as you take your last breath. We could do better. But never mind all that! Know that we are pulling for you.
I’m not sure what your exact diagnosis is, but I work at the Mayo Clinic (lab tech), and there is a physician here who specializes in difficult cases of pancreatic cancer. His name is Mark Truty. If you would need to consider a referral to another medical center, you might check him out. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-finds-3-factors-in-care-plan-extend-life-for-advanced-pancreatic-cancer-patients/
Thank you for letting us help. I hope you can find an investigational program that focuses on the genetic profile of your cancer.
We Brits (I know you’re one too) complain and complain and complain about the NHS, but if one of us had what you’ve got the financial cost would be some Hospital Parking fees. It seems to me – and I hope I’m wrong – that in the USA the financial cost is your house and everything else as well. My 91 year old father recently had a pacemaker and a full new hip in the same week. The cost? Some petrol for my sister to take him in. I’m never complaining about our wonderful system again. I promise.
I’ll admit to writing the above comment before checking out the Go Fund Me page. Donations are disabled for the moment, it seems. Can it be reopened soon?
I’m not British — I just lived there for 16 years. I appreciate your interest in contributing to the fundraiser. For now, I found the response so overwhelming that I asked Megan to shut it down. There are so many others who need help desperately at this time, due to economic fallout from Covid.
My mistake! Was totally convinced you were English! Sorry about that. I’ll keep praying for you🙂
I am unable to help now financially but since I had a friend who was treated at Stanford Hospital for this type of cancer and a child who died from cancer was hoping som information might help. My friend had what the called a Whipple procedure and is more than five years out. Sometimes the do not tell you everything that is available when the can not do it. Education is everything for patient going through treatment. It also helps to check clinicaltrials.gov to see what is coming up for new treatments of different cancers. Praying for you and your family.
Thank you. I’m aware of this surgical procedure, which I understand from friends who have had it is not to be taken lightly, but I am at this point not a candidate for surgery. The tumor grew into the surrounding blood vessels and is partly blocking the hepatic portal vein, as a result of which other vessels have developed to share the load — a wondrous system, the body. The plan in my case is to shrink the tumor in the hope that it may become removable by surgery (with other protocols to follow).
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