As one of my clients, an economist, might say, “2020 continues on brand.”
The past couple of weeks have been a whirlwind of medical tests, waiting for results, and doing my best to focus on work. Yesterday I had a biopsy that appears to confirm a diagnosis of pancreatic cancer. (I am well aware of the seriousness of this diagnosis, so please keep your dire warnings, etc. to yourselves.)
Several friends and family members have asked what prompted me to have these tests. I’m sharing the following in the hope that it may help someone else avoid getting to a place like that where I now find myself, whether with this or some other disease.
I began to experience vague abdominal discomfort in October, 2019. During a doctor’s visit at the start of 2020 I described it as a sensation similar to what I felt in 2006 when, as it turned out, I had an ovarian cyst. (The cyst was removed laparoscopically and proved benign.) Based on this description, my doctor ordered a pelvic ultrasound in February. It showed up nothing unusual.
The discomfort continued. I tried eating smaller meals and exercising more, not drinking beer, then not drinking any kind of alcohol. I still felt the vague discomfort and mild bloating. Over the summer I had a couple more visits with the doctor; my back had also begun to hurt, and it wasn’t the kind of back pain I’m used to — the kind I’ve brought on myself by 25 years of carrying heavy materials alone in the shop and on jobsites, digging thousands of holes for plants in hard-packed soil, shoveling and carting acres’-worth of topsoil, gravel, and mulch for my gardens, and building limestone paths and retaining walls around the homes where I’ve lived.
Beginning in July, I started seeing a bodyworker who specializes in treating athletes through myofascial release; after several weeks of getting no lasting effects, I went to our friend Dan Selvaggi, a licensed masseur. The massage felt wonderful, but the back pain persisted, and the abdominal discomfort was turning into something I could, by that time, describe as low-level pain.
In September or October my mother-in-law, who lives in northern Indiana, was diagnosed with lung cancer — this, after many months of perfunctory tests and balls dropped by her medical care providers, as she found it harder and harder to breathe, her blood oxygen level was so low that she could scarcely stay awake for half a day, and she had to go to the emergency room twice to have fluid removed from the area around her lungs.
After hearing about Jo, I decided it was time I became more assertive (not that I’m generally a shrinking violet; nor would I begin to compare my GP, who respects her patients’ intelligence and genuinely cares about our welfare, with the doctors who have been treating my mother-in-law). I scheduled an appointment with my GP; the earliest available was six weeks out. A week into that wait, I said “to hell with this” and went to the walk-in clinic, where I described my symptoms. I had a battery of blood tests, all of which came back normal, other than revealing a slight vitamin D deficiency. When my doctor received the results, she called me in for an appointment right away — not because normal blood test results would warrant an immediate consultation (that would be illogical), but because it seems to have taken my proactive step to impress on her the depth of my concern. There’s a fine line between being seen as careless about your health and being seen as a hypochondriac. Apparently I haven’t negotiated that line very well.
Based on my updated description of the discomfort, she ordered an abdominal ultrasound. That revealed a mass on my pancreas, as confirmed by a CT scan the following week and a biopsy yesterday.
The point of this post
In retrospect, I wish I’d been more assertive with my GP back in February. The pelvic ultrasound showed nothing abnormal, but the discomfort persisted. I should have insisted on further screening to find out what was wrong.
And even though I can’t think or speak as a medical professional, I do think my doctor should have recommended further screening. I say this not to blame her, but to encourage whoever is reading this to be more assertive than I was in February. My tumor could have been discovered eight months earlier. We all know the importance of detecting any kind of cancer as early as possible.
The thing is, most patients are not medical professionals. It’s exceedingly difficult, even for someone who writes professionally, to articulate the kind of discomfort I’ve been feeling — and even more, to pinpoint its location. In my case, the sensation feels like it’s immediately under my left lung — not farther back, where the pancreas is actually located. How did it feel at first? It simply felt “amiss.” Something was out of whack, and it was accompanied by mild but noticeable bloating. Another sign: if I had just a few sips of beer or wine, I sometimes experienced a sharp pain in my mid-back. Sugar. Pancreas. The connection didn’t even occur to me. Most of the time the vague, unfamiliar feeling defied description.
I’ll be writing more here as things progress — far less blow-by-blow chronology of symptoms and such than thoughts and observations about sickness and other insufficiently-discussed matters that have interested me for as long as I can remember. I have a meeting with an oncologist next Tuesday at which I’ll get a better picture of where things stand and what kind(s) of treatment may be possible.
Don’t hesitate to speak up for yourself and your loved ones.
As a veterinarian who has followed you over the years, ask for the best, question all results, don’t be “put off”. We have great medical care with horrific access. Make them listen!
On Wed, Nov 18, 2020 at 4:47 PM Making Things Work wrote:
> nrhiller posted: ” As one of my clients, an economist, might say, “2020 > continues on brand.” The past couple of weeks have been a whirlwind of > medical tests, waiting for results, and doing my best to focus on work. > Yesterday I had a biopsy that appears to confirm a” >
Nancy – sad news to hear. Thanks though for the lesson. Squeaky wheel versus the boy who cried wolf – we gotta fall somewhere in between I guess. Hoping for the best. PF
Goddammit. I’d punch my desk I’m sitting at as I’m reading this, but it’s the one you taught me how to build. Thought nothing could make me want to turn back time to early 2020 but I find myself really wishing I could now. I’m sorry you didn’t get the care and attention you needed right away. Thanks for sharing this tough news, and looking out for everyone. Thinking of you.
Marselle, thank you. I want to emphasize the fine line we all walk when it comes to medical care. It’s such a tough thing to negotiate.
I’m so very sorry Nancy. Hoping for the best!
The feeling that I really want to kick something has been building all year. Give me a target, Nancy. Just point, and I’ll kick.
I wish there were words. Or something I could do. I’ll start looking at YouTube for pancreas surgery videos, just in case.
Life isn’t supposed to be fair, I know. But maybe if it was just a little more fair . . .
Dear Nancy, I follow your blog, read your book and totally enjoy your writing. Really delightful.
Thank you for sharing the news of your diagnosis. I know it is not something you wanted to write.
I am pulling for you. I know this diagnosis all too well as my wife had a similar road to discovery to her pancreatic cancer four years ago.
I hope others read your words and will take care of themselves and loved ones. I join everyone and hope, and wish and pray for the best for you!
Oh Nancy! 2020 just keeps coming back for more. Bummer! Appreciate you sharing so that we can walk this journey with you in spirit. I know you will tackle this challenge just as you would a good kitchen wanting a makeover. Please know that I and so many others will be thinking of you often sending strength, comfort and resolve. Blessings
I’m in for the journey. Just subscribed. Been learning from you for a while. Hoping I will have something useful to share.
Nancy, I only know you through the Lost Art blog and your Kitchen Think book. Sorry to hear the bad news. Hope modern medicine will do its thing and hoping you will have the best possible outcome.
In my professional career, I am a Biomedical Engineer with the Texas Medical Center in Houston. MD Anderson Cancer Center has some new and very good processes for the treatment of this. Please ask your Oncologist to research it, and if you can get a referral to here, We live within 15 min of IAH airport and less than 30 min from MD Anderson. It would be our honor to be your host family.
Much appreciated. Thank you, sincerely.
Sorry for the hard diagnosis! I’ve heard people say, “All I can do is to pray for you,” when in fact, prayer is the BEST thing we can do. I commit that I will pray for you through this troubling period!
Sorry to hear of your diagnosis. Pancreatic cancer runs in my family, mostly on my mother’s side but also an uncle on my father’s side. It is very difficult to catch early because the symptom is so nonspecific.
When my Mom was in chemo they would measure some of the markers in her blood to gauge the vigor of the cancer and effectiveness of the treatment. What I don’t understand is why those same markers can’t be part of the annual bloodwork for those of us with family histories, just as PSA markers are used for prostate cancer. I would expect the markers to show a changed trend before physical symptoms were felt but I am not a doctor.
I wish the best possible path forward for you.
That’s a very good point about the markers.
Our family has been touched by similar circumstances… as they say “F*** Cancer!”
Fight like you’ve never fought before…
Prayers for peace & healing
I keep catching my breath,
willing this not to be the case.
I have followed your artistry in wood and with words over the years.
And even now with such difficult news.
As others have said- I wish there was something I could do.
I will stay connected and awake to what comes next.
Sending you love, Debora
Thanks, Debora. I appreciate your note very much.
My wife and I have both had to deal with cancer diagnoses and treatments and I’m so sorry you have to go through this also.
All I can offer is some advice from a friend who had colon cancer: “it’s your body and your money so you have final say about everything.”
Don’t be passive. I wasn’t and it helped me find a better course of treatment.
Meanwhile, keep up the good work; I really like reading your articles.
I have been enjoying your blogs on LAP for years and expect to do so for many years to come. I have been living with an elevated PSA for quite some time. I have seriously changed my diet and I am pro doctors, not one or 2 but 5+. The point I want to make is when you get your first opinion and your second, go for a third and a fourth, the more information you get the better decision you will be able to make. And search out the best facilities in the country, I selected Cleveland Clinic and saw 2 Specialists, one said “Cut if you want,” the other said “watch and wait” – – I’m still watching and waiting. Your case is obviously different but as with all of us, YOU are in charge. My very best wishes to you, Nancy, give it the tough fight!!!
If you have not done so already, head over to csn.cancer.org That is the American Cancer society site. The discussion boards are specifically for patients and family, there is an active one for Pancreatic. You will find better answers there than anywhere else. Also, be very wary of Dr. Google. Validate anything you read either with your Onc team, or on the CSN site.
If they don’t give you a thorough briefing on all aspects of your treatment rip their lungs out and force them to. It should include discussions of all forms of Chemo, and radiation if any.
Also, yes, it looks grim, but the reality is survival rates have been steadily improving. Which reminds me of another thing. The Standard of Care has gotten considerably more sophisticated, but the survival numbers you are probably looking at are usually cumulative over time for your cancer. So the numbers may reflect modalities back in the ’90s or even earlier. You in particular are probably going to find the lack of answers on many things frustrating. That in turn drives people to Dr. Google. There be dragons.
Get some things: a digital forehead thermometer, the kind you can run by yourself. A digital finger Pulse Ox meter. A notebook, spiral bound. In it record EVERYTHING. Names, phone#s, email, Dr.s meeting, your temp, your blood ox, your meds, when you took them. American Cancer, and hopefully your treatment center can help with rides if you need them.
You are not in this alone, and you will pull thru.
Thanks so much for recommending the CSN site. I will become a regular there, no doubt. I had no idea of its existence, and it sounds useful, in many ways. Thanks, too, for your perspective on this.
Hey; Just another stinkin’ bump in the road. My wifes oncology surgeon said today she was” doing great, keep doing what you’re doing. CT scan is clear, you’re not loosing weight, it’s maintainable. You can’t think and worry about what might happen or could change. Live today !” I’ll say a prayer for you, along with all the others. We all need prayers.
Also, on CSN, sometimes Pancreatic people post on the “Rare and Other Cancers” board. Some problems are common across cancers, some are siloed. Head and Neck sees a lot of nutrition problems, Breast women’s self-esteem, etc. When you’re fixated on the current problem it’s easy to miss the search function.
A very strong, determined and tenacious woman I know wrote a story I’ll never forgot.
It reminds me to safely hold on to what is dear to me and slosh on when the depths are unknown.
So, forward we all go with you, some near and some far, all holding on tight.
It’s just once ditch.
“I set off on my adventure, running as far as I could, my bag slung across my shoulder. Walking, then running again as my lungs allowed. Aside from my boots getting clogged with mud, things seemed to be going OK until an obstacle came into distant view. A ditch. The area was essentially fenland, lying close to sea level. Without drainage the fields would have been far less productive for crops. No matter, I thought. I’ll just hop across. But the closer I got, the bigger the ditch appeared. Oh well. I’d just have to clamber down one side and up the next.
By the time I reached the edge of the ditch I realized it was more of an industrial pipeline. There was no telling how deep the water might be. It was definitely too wide to jump over. I was certainly going to get wet; the only question was how wet. I looked back toward the station. Too far to be worth reversing my course. There was no other way around; the ditch continued all the way to the road I usually took on my bike.
With a lump in my throat I eased myself down the bank, hoping for water no more than ankle-deep. The cold, dirty water came up to my arm pits. I sloshed forward, holding my bag aloft, and climbed the other bank. At least there was just one ditch.
On arrival at the workshop I received the predictable ribbing. I was glad to find the woodstove aflame. One of my bosses kindly suggested I get out of my sodden clothes and offered a pair of his overalls. It was a long day.”
From “Hurry Slowly, Part 1: Soggy Bottom” by Nancy Hiller
Thanks so much, Karen.
Nancy, I know you only through L.A.P. and your kitchen book. I am 3 years cancer-free. Follicular lymphoma. My son is 33 years cancer free – acute lymphoblastic leukemia. He is a cardiac nurse specialist and works 12 hours days with covid patients in an MICU/CICU. Several other doctors and nurses in my family. Based on some collective wisdom we would say get a second opinion on whatever treatment is prescribed. I questioned my oncologist’s 3rd component (to follow the first two). We made a previously planned move to a larger city before the third would begin. New oncologist, specialist in my diagnosis, confirmed my hunch, and said no way would they prescribe #3 for me, confirming my suspicions. Per Dr. Carlson’s advice above, question everything. Pick a close friend who you trust to walk this road with you.
Read everything you can about your situation. Including non-typical, alternative, natural options out there. Praying for your healing, and peace.
Wow. Very interesting about the conflicting opinions/recommendations. I will look into this, as you and others have recommended.
Nancy, I think I understand where you are. I am a cancer survivor and have learned some things along the way. For me cancer was a slap up side the head that made me focus more clearly. I think I grew from the experience which I would not wish on anyone. I’m ten years later and appreciate life more than I did before. Stay strong and I’ll say prayers for you.
Thank you, as always, Anthony.
Thank you for sharing, bucko. You have a lot of company, though your writings and interviews are often without peer.
You’ve probably heard lots of people telling you to be strong or are strong, and will likely hear it a lot more. That may ring true, or may feel condescending or out of touch with your experience, or might induce guilt because you feel you’re letting people down by not being positive. We often say things to make ourselves feel better or more in control of our own life, rather than something that is actually helpful to the person we’re talking to. We mean well, but that isn’t quite enough. We’re terrible at honest support despite the frequency of negative diagnoses. We should and could be great support to each other, and I hope your support is stellar.
I love being called “bucko.” This is a first! Thank you for that, along with your kind words and insights.
The point of your post is so helpful Nancy, my wife just dealt with a gall bladder removal that spanned from the start of the Covid19 outbreak to its removal finally a couple of weeks ago with a complication that led back to the ER last week. Assertive discourse in the ER or with any physician is so intimidating until I accepted the truth that while they are often not as accurate as we would hope with their diagnosis or the interpretation of the symptoms we present with. We are praying for you and family as you navigate through this season.
Really sorry to hear this news and wishing the best for you. Your push to advocate strongly for our healthcare is great advice.
Being self employed in the trades often means working hurt and minimizing the pain trying to finish up a job. Increasingly my biggest fear isn’t getting hurt at work but that I won’t give proper attention to something that seems so minor at the time. Hard to do after so many years of shrugging it off and carrying on.
I couldn’t sleep-not uncommon. As normal, I picked up my phone to browse and catch up on friends and news … and read your disclosure. I am both saddened and angered. Sad that a friend must deal with such a brutal blow. Angry that I have no power to help beyond words which too easily can carry like a placatory breeze. Your openness to sharing this hurtful diagnosis is humbling. I will follow your journey with gratitude for your too brief touch upon my life and with the hope that all whom you hold dear and love can and will sustain you throughout.
I am sorry to read this, but thank you for sharing. I Am hoping for the best
So far, by the way, you are doing the right things. Cancer is a treatable illness, it is not a punishment from God. Ignorance compounded by stupidity is a sin, the failures of our bodies are not. So treat openness as a blessing and keep talking.
Also, you have confronted your providers, and that puts you way far down the road to recovery. My youngest is an ER doc and the one that caught my cancer. He has been as modest of his achievements as I have been proud. He is constantly distressed by the medical practice failures he sees around him, and he works in only top-tier Trauma-1 sites. HAVE SOMEONE WITH YOU ON EVERY VISIT, every time a decision is made, or an action is taken. Let your husband drive, it will probably improve both of your odds.
I had a low skill hospitalist try to schedule me for an unnecessary and dangerous surgery, bypassing me, my wife, my oncs, any written approval, and our very good civil litigator daughter. Stupid and arrogant, she is still on staff at that hospital. Your scepticism is a tremendous asset.
It is generous – albeit typical – of you, to share your learning experience. Thank you.
I’ve had several loved ones battle this particular demon 💔
But now is the time to take a breath . . . . feel the love, soak it up.
If you need more, let us in this community you have touched with your presence know. . . we have plenty to share.
Thank you, Donna.
I’ve read the comments on your diagnosis.
Pretty much, they’re what I would say so I won’t say anything else except, maybe, read “The Emperor Of All Maladies, by Simon Singh”.
I’ll pray for you.
I am looking forward to reading that book. Thank you.
Well, the Bible
We have never met, and haven’t interacted beyond me being inspired by your beautiful writing here and on LAP. I just want you to know that you have inspired me to look for a way to be a part of the woodworking world. Thank you for that. While I imagine the near future is likely to be tough, I wish you many years of good health.
You’re on a difficult road, Nancy, but I hope your reaching out as you have will make it less lonely. If you can retain the insight and grace you have shown in your writing, it can be a good journey, whatever the destination.
I would consider it an honor to go on this journey with thee, as one of the characters says in Everyman.
Be of good heart and keep your sense of humor close.
Gerry (like Gary) Cox
I have experienced pancreatic cancer through my first wife. I have no advice, only hope and prayer for you.
I have followed you for several years and gone through some back issue FWW articles you have written. Beautiful projects. Last summer I bought your Kitchen Think book and enjoyed it thoroughly. You make your projects sound like no big deal, anyone can do it. But I am mesmerized by pictures of your projects. They are just beautiful. You truly have “it” and have made the world a more beautiful place.
Steve, thank you. I appreciate everything you’ve written here.
Nancy all I can say is I’ll keep you in my prayers.
Strongest prayers coming your way. I was able to get through cancer 20 years ago and I don’t think that I am as tough as you.
Keep a strong heart and break the treatment into smaller goals.
Norm: “[A]nd I don’t think that I am as tough as you” is hilarious. Thank you for your prayers, and I will keep your advice in mind.
Oh dear! I’m so sorry to read this news!
I’ve only met you virtually via NBSS but your goodness and generosity of spirit shines through even through the Zoom-scape.
I sincerely hope that you surmount this challenge as you have so many others in your life.
I don’t know that my wife and I can do anything to help but if you need connections in the Boston oncology community, please let us know (my wife is in biotech and we have connections through the Pan-Mass Challenge and Dana-Farber).
Art, thank you. This is so kind. I will do my best to meet this challenge. Your good wishes will help.
Damn, you said it, you like being called Bucko. That might stick. The only other worrisome sign is that you’ve invited this ragtag group to ride along with you. Consider yourself warned. But now I am aboard. And we’re going to have to do some laughing here. It’s all deadly serious. Which calls for humor. The only true antidote.
Thank you! You made me laugh out loud.
Nancy, you are an inspiration as you begin to confront the news. To open up and share this so that others may benefit from your recent experience is a noble thing to do. I hope that your writing and making will give you some respite as it continues to enrich us. You will be in my thoughts.
Thanks, Dave. I appreciate this very much.
Nancy, this is truly unwelcome news. Like many others, I only know you from afar but share your story and posts with my two young daughters on a regular basis. I’m thankful to be raising them in a world where they have role models like yourself. I hope by sharing THIS chapter, you’ll get as much out it as you have from sharing the others. My heart goes out to you and your love ones.
Sad news, I admire your courage in writing about it. I love to read about the work and accomplishments of women woodworkers, since, at 80, I am of a generation that was told “girls don’t do that”.
It’s wonderful to see how things have changed; to see women able to make a living with their ability in working wood.
I know it wasn’t easy to accomplish what you have so far, and I look forward to seeing more of your beautiful work and reading another of your books in the future. There are survivors of pancreatic cancer, and I hope and pray that you will overcome this latest challenge!
Nancy, so sorry to hear this.
I hope my experience has some value for you: Based on my my own medical adventures with cancer (2004 non-Hodgkins lymphoma, 2014 appendix carcinoid, 2018 NET/colon cancer – NET = neuro endocrine tumour), it’s important for you to know exactly what you’re dealing with, but maybe you already know? There is a big difference between pancreatic cancer and NET cancer in the pancreas (Steve Jobs and Aretha Franklin suffered from the latter.). Your biopsy should be very specific about the tumour. If NET is involved there is a wealth of information available from e.g. the NET research foundation, Ronny Allan’s blog and Facebook groups, etc.
This can be beaten, my thoughts and prayers are with you and your family.
Thank you. I’ve made a note of what you wrote and will be sure to bring it up on Tuesday. It’s great to know that you are (or at least I hope you are) going strong.
I’m doing amazingly well, thank you. 2018 was a rough year (colon surgery -hemicolectomy, 6 months of chemo, …) but it looks like I’m all clear now, with quarterly monitoring.
A cancer diagnosis puts you on a vertical learning curve, if you choose it. I requested (insisted on) copies of all lab reports, and I researched all the medical terms, so that I understood what was going on, and what the options are. The other piece of advice I could give is to find a doc who specializes in what you have – with all due respect, oncologists are GPs for cancer, so find the specialists.
Strength to you and yours.
Nancy – you are a Hiller woman. That screams capable, strong and survivor. I am holding you in my thoughts and in my heart.
I am deeply sorry and angry to learn of your diagnosis. A mother lode of cancer runs through my family. I send all possible positive vibes your way and pray that good health is just around the corner, Bucko. We’re all hanging in there with you.
Sorry to hear this. I’ve learned the same lesson dealing with the US medical profession through the expereince of family and friends. We have to be proactive about our health care; not be put off by the medical system. I’m over due for a blood test my doctor ordered; will schedule it ASAP. Thanks for the reminder.
Will be praying for your good health.
So much bravery here to put this out into the internet like this! I am a praying person, and I will pray for you. You lift up everyone around you. Now it’s our turn to return it to you with our support. Thank you for sharing – maybe someone else will live a longer, healthier life because you warned us to pay attention and push for help. Even in this you are making the world a better place.