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Bucket Lists and Telling Our Stories

From Mystery Malady to Pancreatic Cancer

Pancreaticcancerawareness160leftAs I mentioned on Friday, TGB reader dkzody last week commented that she had believed pancreatic cancer is hard to diagnose and wondered what my “mystery malady” was.

Today, I'll tell you my experience with that mystery and my eventual diagnoses of pancreatic cancer. Keep in mind – no foolin' around – that my story applies only to me. I have no idea how this works out with other people.

MYSTERY MALADY SYMPTOMS
Last October, after some unaccounted-for symptoms prevailed over two or three weeks, I visited my then-physician who brushed me off after seven minutes saying it was probably a virus that would go away soon.

The symptoms were painful or irritating or alarming enough (to me if not the doctor) that it was obvious I needed a different physician. If you really care, you can read about my difficult search for a new primary care doctor here.

After my many failed attempts to find a doctor who would take me, a friend intervened at a major teaching and research hospital here and I got an appointment right away.

The mystery malady had begun in October 2016 and has continued until 31 May 2017 when, finally, the diagnosis was determined. As terrible as it is, there is a kind of relief in knowing the malady has a name.

In between those dates, there was a collection of 12 to 15 symptoms that came and went mostly independently of one another, usually several at a time in various combinations over the months. Here's a list that is as close to complete as I can make it:

  1. Random pains rotating through sides, stomach area, chest and back

  2. Sick headaches a couple of times a week

  3. Malaise

  4. Vertigo

  5. Weird dark spots on skin that come and go

  6. Weight gain early on

  7. Weight loss later (once, 11 pounds in two weeks)

  8. Extreme tiredness – stopped daily workouts

  9. Hard to sleep more than three or four hours

  10. Bright orange urine

  11. Unbearable itching on every inch of skin

  12. Abdominal pain following meals

  13. Deep, horribly aching pains in upper arms

  14. Worst leg cramps I've ever experienced

  15. Jaundice

Usually, there were “only” two or three or maybe four of these symptoms at a time. The orange urine was so bright you could have lit up the whole bathroom with it. That happened for a week or two in February, subsided and again for a few days just before the diagnosis.

The itching occurred concurrently with the orange urine, was terrible all day and ten times worse at night. No anti-itch creams like those for mosquito bites worked. The pain of scratching too hard, even if I drew blood, was preferable to the itching.

If it were not so awful, it would have been funny: at one point I twisted a paper towel to pull back and forth between my toes because I couldn't effectively scratch there.

The deep-yellow jaundice appeared a couple of days before the diagnosis.

As I said, I never had all these symptoms at once. It was a mix-and-match mystery malady over seven months. A few continue as I await surgery.

DIAGNOSIS
Through all this, I was seeing the doctor regularly. He tested for just about everything and it seemed, over the months, that they took a gallon of blood from me. All the tests came back in the normal range. All the various kinds of scans and a colonoscopy returned normal readings.

Then, on 31 May, I returned home from that latest appointment to a phone call from the doctor I had just left: Get to the hospital immediately, he said. A bed is waiting. I'll meet you there.

I forced him to tell me why. The words “pancreatic cancer” were said but that's not something that sinks in at first. It takes awhile. If I found out what had alerted him to the diagnosis, I don't recall now.

It's also hard to recall what they did to me in the hospital, but before long the itching and most of the pain were gone. Lots more tests were performed and the endoscopy during which a temporary stent was placed to redirect some effluviant(?) of the body.

If you try to find out online why it is so difficult to diagnose pancreatic cancer, you won't get far. Most pages – even from some of the highly respected health organizations – go straight from “it is difficult to diagnose” to “once it is diagnosed, treatment is...”

If I tried, I might find some better information but mostly I don't have time and I'm not all that interested right now. Maybe someday.

So, there you go, dkzody. That's the mystery malady and the diagnosis.

As I said before, they – healthcare people – are keeping me busy. There is another test or consult almost every workday. There is much to arrange for Ollie the cat while I'm gone, for what I need to take to the hospital, for care when I get home and to arrange the house for what I can and cannot do on my own when I return.

I've tried to keep up with email from all you wonderful readers but I know some have slipped through the cracks and I run out of steam with a need to lie down to rest or nap several times a day. I had no idea how much there is to do to prepare for surgery. I thought the hard work is afterwards.

Oh, one more thing: Throughout this odyssey, I used the phrase "mystery malady" as kind of joke to myself about all the disparate symptoms. It has turned out not to be much of a joke but it served me just fine until there was a real name.

PancreaticCancerCenterImage

Comments

Ronni, I am sorry to learn of your illness, and am keeping you in my prayers.--Gaea Yudron

Thinking about you often, Ronnie, and...for what it is worth, sending you heartfelt strength and comfort.

Wouldn't it be great if they had one of those diagnostic computers for the body like they do with cars. Just plug it in and Bingo the survey says "You've got Appendicitis."
But unfortunately, what makes us all unique also makes it difficult to do a one size fits all diagnosis. This is why it's just as important for researchers to find markers for specific diseases as it is to find a cure.
The best thing you can do now Ronnie, is to listen to your doctors, stay informed and ask questions.

I am devastated by your diagnosis. I have been a steady follower of your blog. I do like the odds your visit to the doctor advised if you have surgery. I will pray that all goes well. I am from upstate New York but if I lived closer I would gladly cat sit for Ollie. I have a calico named Callie and they could be friends. My thoughts and prayer will be with you.

tough diagnosis indeed, I have lost friends and neighbors to Pancreatic cancer but.....I also have a friend who is 3+years past surgery for pancreatic cancer -some procedure you are having - whipple -she is doing very well - she is younger - and a runner - but I do not think cancer cares much about that. She developed diabetes after the surgery and perhaps you may as well. Stay positive - and all of your faithful readers - including myself will be sending strong waves of good wishes as you undertake this journey - hopefully - back to good health.

I do recall your post last fall about your visit with the 7-minute doc who said, when you told him you had a couple more questions, "time's up." Thank goodness you persisted with your mystery malady, and hooray for your friend who steered you to the right place! Those symptoms sound so miserable, and too important to ignore or "wait and see."

It drives home the advice we hear often that we really are in charge of our own care, and must seek knowledge and help. Thank you for reminding us all not to ignore symptoms. I am so happy to learn you found a great doctor and will be at a teaching/research hospital.

As for preparations, my gosh there is so much to think about! Including, and especially dear Ollie. You'll be on top of it with your superb organizational skills. After knowing you through this blog since near its beginning, I'm pretty sure there will be soup in the freezer, favorite flannel gowns, music, video, laptop and books when the time is right.

I believe you will find the patience you asked for when it is needed. Anyone who can stand in the sweltering Austin heat with Barbara Walters waiting for Willie Nelson to finish his pool game with Waylon Jennings has patience. And grace under pressure. (Doesn't have to make you happy about it.)

Thank you again for sharing your experience and thoughts.

Most of all take care, and take all the help you need from others (and even some you think you don't need). I am rooting for you as are we all.

Warm thoughts and hugs.


Wow. What a long winding path to this diagnosis. You certainly had a lot of symptoms, though, especially that bright orange urine. I recently came across another piece of information that mentioned that urine color and that it is a very dangerous sign.

Thank you for the listing of all these symptoms. It gives one pause and also makes me wonder about our medical personnel. I had this discussion with my doctor the last time I saw her.

My appointment, scheduled for 4 pm, did not even begin until 6 pm. She and I sat and talked until after 8 pm when she said, "let me listen to your heart and lungs, and do some checking." All was good, and my assignment, when I left, was to come in the next day for a blood test. But, she agreed, that too many doctors are brushing off their patients. They don't listen, they don't keep testing and checking. Most want to prescribe some pills and move you along.

I'm glad you are on your way to treatment, Ronni. You have been in my thoughts and prayers every day since your startling post.

Delaine

I have been quite emotional about your diagnosis—mostly angry that it took so long. I'm also confused, since it seems that one symptom, the color of your urine, should have sent alarm bells ringing! I'm not in the medical field, so am speaking entirely from a lack of knowledge, but it seems to me that an earlier diagnosis would have averted so much of your suffering. Enough said about that, I am so sorry you are having to go through this, Ronnie. Thank you for sharing about it.

I am so sorry to hear you had to go through all those wretched symptoms before you got a diagnosis, and that it was so difficult to get the diagnosis. What a challenge. At least now you have people around you who are giving you support.

Thinking of you, saying a prayer each day...............Much love, many blessings.

What a miserable list of symptoms to have endured for so long. So glad you finally got to a good doctor. Not just good, but the best. Having absolute confidence in your doctor makes all the difference.

Hi Ronni,

I just discovered your wonderful blog the day before your announcement of your diagnosis - so this is my first comment. I'm so glad I discovered you! You are just what I was looking for - someone who writes lucidly, in a very informative, entertaining way for someone in the older age group. I look forward to having you around for a long time. I'm sure all your readers "need" you as I feel I do and hope that our interest and support help you in some way through this upcoming ordeal.
Thank you for all you're giving us - may you feel our circle of support and concern for you!

Carol

Just a simple thinking of you, drop a prayer or two.

Aside from gun shot wounds and broken bones, there are not many symptoms that point directly to a diagnosis. As I said, I never had more that 2,3 or 4 of those symptoms at a time, they mixed themselves up in a variety of combinations.

And, there were periods in between when I felt healthy and fit. I don't blame anyone for taking so long to find it nor should you. We know now and the prognosis is better than a lot of people get from this.

It's interesting how difficult diagnosis is, even with all the technology and accumulated knowledge of the medical profession. It's disturbing how much time went by between your first complaint of your malady and its identification. Sometimes it seems as though we had a better medical system decades ago when doctors actually got to know their patients and, sometimes, their patients' families, and spent enough time with them to develop a more comprehensive picture of what might be going on. Maybe that would make no difference in come cases, but combining more of an overall awareness of a person with the technology available today would seem to provide opportunities for much improved outcomes.

I hope that your preparations are coming along well, Ronni, and that you are able to maintain a sense of equilibrium while going through all this. I'm very impressed with your ability and willingness to share the big picture with your readers. You are a remarkable person!

Can't fathom why a doc would blow off symptoms like you had. She/he deserves a bad review on Vitals. Keep the faith. We are praying for you.

You've been an amazing resource over the years Ronni, and continue to be one even through this serious health crisis. Thank you for your courage and openness and for being a priceless gift for the rest of us. I wish the best of all outcomes for you as you commence this forbidding journey

Your list of symptoms includes 8 of the most common symptoms of pancreatic cancer, and the others may ring a bell for someone else with confusing symptoms, but not the red flag pointers of abdominal discomfort after eating, jaundice, orange urine and random trunk pain - and help them get the help you should have gotten from that first piss-ant doctor you saw.

So in addition to keeping us informed of your treatment process, you may well have alerted someone else (or several someone else's) because pancreatic cancer is on the rise. It may not be fun to detail, but it's generous and thoughtful of you to do this.

Oh Ronni, I am so sorry you are facing this. I hope you know that there are many, many of us who are thinking of you and hoping that your treatment is successful. Strength and courage to you.

As hard as it may have been to write this post, I appreciate that you took the time to do it. My mom spend weeks going to the doctor for mystery symptoms but he didn't take her seriously. He told my brother she was making them up to get attention. We will never know if it would have made any difference if she'd had another doctor. Your well documented saga to get a diagnosis is sure to help others to be persistent and not doubt themselves. (We know when something isn't right.) Thank you and the best of luck with all you have to do preparing for the surgery and for your recovery after.

I'm adding my prayers to the others for you, I've been following your blog for years and hope you will be around to inform, entertain and enlighten us for many more.

Your persistence was a major take away from your story. I'm curious. What was the
most important symptom and test that finally led to the doctor discovering the cancer?

A few years ago, I recall news articles about Jack Andraka, the teenage science wiz who developed a new test for this disease. The articles touched upon the difficulty and expense of testing, and pointed to a radical change in the future for pancreatic cancer. Worth a Google. He has TED talks, etc. providing good context.

So glad to know the symptoms. Hugs to you...we are with you.

Oh, Ronnie. So sorry to hear this news. Will keep you in my prayers.

I'm going for some tests today, and will be borrowing some of your strength for a few days.

I'll be with you in thoughts and prayers through the coming months.

Sending positive thoughts your way.

Anything practical your legion of enthusiastic readers can be offering?

Thank you again, Ronni, for taking the time to write, which keeps us all in touch, informed and providing the companionship wanted at this time - we're all in this together, for and with you.

Have you thought of borrowing or buying a small tape recorder, or using your cell phone to record important meetings or information you don't want to forget or miss? Can you have a picture of Ollie in the hospital room? Consider other comforts you might want that aren't necessarily useful in the medical-scene sense but would make you feel good - music (w/ear plugs) or a portable radio for favorite stations, Kindle? These are likely not allowed in ICU, but later perhaps.

Push for what you want, using that considerable charm and intelligence of yours.

You have been such a good friend (of the virtual variety) to so many people over the years. It is with great appreciation that you have let us share in this health problem.

About all I can add to the other notes from your commenters, is my concern and wishes for a complete recovery.

Take care, Ronni.

Thank you for the detailed and useful information! After the first post about your diagnosis, I immediately consulted several of the main medical websites--all of which indicate how difficult it is to diagnose pancreatic cancer. I had read earlier that it was on the rise, although no one seems to know why.

That's not to excuse the doctor who blew you off 7 months ago. Even though the symptoms weren't specific, it sounds almost negligent that he didn't even suggest any tests during the few minutes he spent with you. I'm so glad your friend helped you find the doctor you have now. He sounds excellent.

I live outside Seattle and have 3 senior cats; otherwise, I'd love to welcome Ollie the Cat for the duration. However, he wouldn't be very happy with the human-to-cat ratio around here!

Best wishes for an uneventful surgery and recovery, and for many fruitful years ahead. I have been reading your blog with interest and pleasure since I discovered it a few years ago, I frequently felt affirmed, empowered and inspired by it.
My attempt to explain why the diagnosis was a mystery so long. The pancreas is an organ deeply situated underneath the stomach and typically does not produce any specific symptoms pointing to it as their origin until it blocks the tube draining bile from the liver to the gut. That send the bile into the circulation and turns your skin and urine yellow/orange. The major clue.
Blessings,
Nan Jolly

Ronni - A(mundane) thought just came to my mind - -
You probably are way ahead of me - -
But, I'm pretty sure that following an abdominal surgery you will be instructed no to bend down and/or lift anything weightier than a pound or so.
If that is the case, you may want to plan ahead to put Ollie's litter box up on a high level ( top of the drier, maybe?) where you can access it more easily.
Also any dishes/ cook pots, etc you use regularly.
Love and prayers . . . . . .. GB

Nothing profound to say, Ronni. Just that this reader is thinking of you every day--and often throughout the day--and sending love and support. Thank you for continuing to write. Linda

Hi Ronni dear

I was surprised by the number of the symptons you had and that you did not mentioned on your blog.

You just mentioned your tiredeness and some problemns with your teeth along the last yerars.

I think it is common for us, olders. to be kind of shy about our health problems.

What I see more important for the future is not who will go take care of Ollie, but who is go to take care of YOU.

To be cared well in your home can make all the difference on your recovery.

You could ask two or three friends who live nearby to take a look on you during your recovery.

I pray for you every day and I light a candle.

Courage and good luck.

love

Beatriz

Ronni, I saw many patients such as yourself come to the ER with vague symptoms only to return in 6 months or so with pancreatic cancer. When the symptoms are not severe, insurance may not pay for the more extensive testing needed to find a tumor. For your readers, even if you included it on a past medical history form, I would say “my parent died of …..cancer and I am concerned that my symptoms could be something like that”. It may result in the doctor looking a little closer. You have your hands full getting ready for surgery but letting your previous doctor know that they missed your diagnosis may help someone else in the future.

I know of no words than to say hang in there and our prayers will be with you throughout your ordeal.

I wish I could cat sit for Ollie.

Ronni, 10/10 what Bruce Cooper and Simone wrote.

I just walked with a neighbour who is recovering from cancer. It's been a year now, and during that time, she and her husband rescued two Jack Russell terrier puppies.

The dogs helped keep her head on straight throughout her many tests, chemo treatments and radiation.

We walked to the lake, sat on a bench and talked about life, work, retirement, freedom and cancer treatment.

There were bad days and good days, but she powered along.

Life throws us some curve balls, and Ronni, you have already experienced how to hit a homer.

Sending you hugs from Montreal.


There is nothing I can say that hasn't been said. You have a powerful rooting team that will be thinking of you as you go through this month and if there is power in a concentration of healing thoughts you should come through this with flying colors.

So much love is flowing your way that is just has to make you well. We won't accept any other outcome.


I wish I could cat sit Ollie... Except for the fact that as far as I remember, he totally snubbed me! What a gorgeous cat though.
Do follow Gin's wise advice about putting his things up so that you don't have to bend down too much.
And remember, you have a lot, I mean A LOT OF friends, who care about you.
Thinking of you...

Cancer, in any form is downright scary...and I am glad you have a good doctor on hand who is helping you gird up for this fight...Having read your column for a good while, I know you are a fighter and I have faith that with good medical help you will make it through...besides Ollie needs his Mom... But, if you can find someone close by who will come stay with you through the roughest days, it can certainly help. Have no family history of pancreatic cancer, but do have a pretty fair mix of family with other forms..(i.e. breast, kidney, lung, and ovarian)...so I know you will face an emotional rollercoaster as well as a the physical challenges...and a helper or friend to talk with will certainly be good for you to have around...(other than Ollie, who I doubt will be very good at the physical help..though no doubt will offer warm furry hugs and good purrs). If prayers and faith that you will win, help...you certainly have mine.

It takes courage to speak as frankly as you have about what you are going through, I admire the way you use your own trouble to teach what it is really like to be old. You don't sound maudlin or pitiable, just very straight forward. I hope for the very best outcome possible for you and am so appreciative of you including us in your life. My mother had pancreatic cancer, it had already spread to her liver by the time she was diagnosed. She lived for two more years and although her energy was limited she managed to stay active for most of that time. It was really only the last month when she retired to her bed. That was over fifteen years ago and I understand there have been some improvements in treatment and prognosis since then.

What a catalogue of symptoms! And so many that could be most anything. Yes, it must be hard to diagnose.

I hold you in my heart ...

Your attitude will see you thru' this ordeal.
You went from East to West and started something that is helping so many of
us,all that good Karma will also be at your side.
Stay strong and fight for yourself as you are doing now.
Love,
Uma

Correction! Early this morning I left a comment before rushing off to an appointment. I came back to read what others have written, and I saw my own post. Clearly I had not had enough coffee.

When I wrote, "Anyone who can stand in the sweltering Austin heat with Barbara Walters waiting for Willie Nelson to finish his pool game with Waylon Jennings has patience." in no way did I mean to imply that it took patience to stand with Barbara Walters!

I have long admired her as a broadcasting pioneer and one who led the way for all women in broadcasting who followed. The two of you appeared patient, gracious and elegant despite the heat. My apologies!

Your attitude is something to be commended. I have recently been searching for first hand accounts of illnesses through the patients eyes after trying to empathize with what some of my loved ones have and are going through. I will keep a close eye on your progress and wish you the best.

Hi Ronni - thanks for listing the symptoms - certainly gives pause for thought and the need to persevere when there is a whole list of intermittent symptoms - just reiterating my earlier wishes for you and keeping you in my loving thoughts .

Annie...
No apologies. It didn't occur to me to take the Barbara Walters statement any differently than how you meant it. Although, perhaps, you spoke a little more truth (sometimes in those days) than you could have known.

Trepidation and hope begins ---

Many of us who have been so very close to cancer know that you will need support if you want good care.

I hope that you will accept intrusion into your life by one or two persons. It is not an easy thing. Your real friends are not going to mind. You are worth it to them.

I hope that one or more persons who can -- will contact Ronni and try to convince her that she accept your intrusion into her life.

Keep in mind though as you begin this fight--There is the friend who visits, which will be welcome at times, but then there is the friend who comes into your home and lightens your load. They are worth their weight in gold. If you can find this person you will be blessed with peace of mind.

Wishing you the best outcome to a bad situation--

Sorry --- once again glass half full here---

I feel badly you suffered for so long, Ronnie. But, I'm happy you found top-notch quality care. That is a load off the mind. The healing has started.

your sharing reminds us not to ignore odd symptoms that come and go and to be adamant with our Doctors about taking our symptoms seriously.

Once again, as so many times before for so many reasons over the many precious years TGB and you have been part of my daily life, THANK YOU! The time and energy you gave us in order to share (thank you again, dkzody, for asking) is just one more example of your generosity - expressed clearly and intelligently, as usual.
Like the others, I "only wish I could .... ". Like the others, you are in my thoughts and in my heart.
And you NEVER need to apologize or justify anything. (But if you have a friend who can post for you after the 20th, any and all info whenever will be a great gift.)

Dear Ronni,

So sorry to hear this devastating news. May you find some ease, peace and contentment in the midst of this challenge. No need to reply. Just know that I'm sending you unlimiting healing energy and love,

Jaylene

Ronni,

I haven't spoken with you since the Obama vs Bush Days. I've been fighting Stage 4 Colon Cancer for the last 3 years. With Luck I'll be joining a Clinical Trial here in Phoenix with the Mayo Clinic. I hope you are able to get good care and congrats on getting a second opinion.

Good Luck and Best Wishes,

Richard Mims

I hate this news. I will pray and think of you throughout this ordeal. I am a faithful reader. You have made a difference in so many lives.

There are no words. Please accept my caring.

Both sad and sorrowful to hear about your condition.

Know that you have touched many, even without your knowing. Let that, at least, give you strength, courage, and a continued sense of belonging.

Prayers and hugs as you go through this! We are all pulling for you!

Wow, we are so sorry to hear about your condition, your level-headedness and bravery in this very difficult situation is so inspiring. It is good that you were determined to get a second opinion, and sharing your experience and the symptoms you had might help many others. Our thoughts and best wishes are with you!

Just wishing I could send you a pretty box with some strength and fortitude inside. This way too hard

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