A READER'S STORY: The World Is Such A Noisy Place
Getting Doctors to Listen

Cancer, Chemo or Old Age?

That's the question I spend some of my time trying to figure out. A new pain in my elbow. Nausea if I eat one more bite. A nose so runny I use up one-and-a-half boxes of Kleenex in a day.

I'll go with old age as the cause of a pain in an elbow. Nausea is probably from the chemo. And who knows (nose?) what's causing my constantly running nose.

I suppose it doesn't matter. Cancer, chemo or old age doesn't change the fact of whatever is bothering me. But it might be helpful to know which does what so that perhaps a medication can be adjusted - although I'm not pretending that symptoms at this simplistic level can in any way be compared to pancreatic cancer.

When I was first diagnosed two years ago, my idea was to follow the instructions of my various physicians and nurses while making preparations for my death. The statistics tell the irrefutable story: fewer than 10 percent of pancreatic cancer patients live beyond one year after diagnosis so I've already won this lottery.

Time went by. It took nearly a year to entirely recover from the 12-hour Whipple surgery. The pain I experienced then was anything but a mystery: 22 surgical staples along with the removal and/or rearrangement of several organs.

Some chemo followed but was stopped when it was deemed ineffective. Eventually, my current chemo regimen began and so far, as I have reported here, it is working well and – amazing – with each treatment the side effects have lightened or disappeared.

Just like not knowing what is responsible for my improved chemo side effects, I have no idea how long this situation of such a good response to the chemo will last. It will end at some point; I just don't know when.

The only thing I think I know about living a reasonably untroubled daily life with such a noose hanging over me is that I must find a way to make peace with it. Which is pretty much the same thing as making peace with dying.

The psilocybin session I underwent in December, the benefits of which so far are holding strong, get me partway there. The rest is one of the passages people in my predicament have to deal with several times.

It's doubtful that any of this is unique to me. I'm just surprised that no one I can find talks about it. Does anyone reading this know what I am not too clearly trying to say?



Comments

Hi Ronni,
I look forward to the posts (yours and others) on this website. I too, am living with a noose hanging over me...in my case it is severe end-stage asthma and copd. I am on in-home hospice now and making my own peace with dying. When I experience a new or worsening symptom I wonder if it is a temporary one (a cold? allergies acting up?) or if it is the progression of my disease and a "new normal" for me. There are so many unknowns, the biggest one of course being "when." I too wonder why all of this is so difficult for others to talk about.

I have a friend going through chemo and she also complains about her nose runny all the time. Always has to have a tissue in hand.

Even for those of us without a noose around our necks, wonder when , is every symptom a sign of something about to happen?
Age does that to you...
And the state of those around you...

I feel the best antidote at 85 plus, is to express it,
Which you do so well.

OY! I did laugh at this .. and I feel a need to not sound like a hypochondriac with each new 'whatever it is' esp. after my oncologist (did I mention I blocked his name from memory??) told me "I'm not a pain doctor and I don't care about what pains you are experiencing" even if those pains in the past were HOW they discovered my NHL. So .. perhaps the runny nose is allergies? High pollen counts this time of year?

Why doesn't the medical community make it easier to find symptoms and figure it out? Oh wait...it's the 'practice' of medicine!

So .. I've stopped asking about symptoms to all except my PCP because I'm tired of not knowing and not getting help.

About aging .. thanks, Ronni, for being so honest and allowing all of us to kvetch and laugh about all this. And get help in a supportive community.

It seems like a daily battle dealing with new symptoms and sudden pains that mysteriously appear. Having to adjust to being unable to do a simple task that I was able to do a month ago is becoming tiresome.

Everything becomes harder to do as my old boy breaks down part by part. As it deteriorates it gives new symptoms and I don't even bother to talk to my doctor about it anymore because, as my 100-year-old neighbor once said, you can't cure old age.

Apparently runny noses are common in old age. When mine started to run I started asking friends....and sure enough...either their nose was running a lot or a friend, or a parent. I looked it up on the internet ...and that too told me it was common. Of course there are many reasons why this happens...and lots of so called cures. It is annoying and can be embarrassing. It is what it is!

An excellent book on dealing with dying and how to have a 'good death' is Katy Butler’s new book The Art of Dying Well...
and the main premise is to talk about it...which you are doing and by example, encouraging others to speak about this important part of life...the dying process.
Katy has a helpful Facebook page called 'Slow Medicine' where people discuss these issues at length.
Thank you for being so honest in your sharing.

This may sound rude and insensitive, and I don't intend either to those of you reading this. I am 82 and have a variety of issues/symptoms that drive me crazy, but no significant "official" diagnosis, except some minor things (residual pain from surgeries that couldn't be avoided) and old age. I try to avoid all doctors, but that is sometimes hard to do (the multiple and never ending UTIs), pain, etc. etc. None of this is unique to me. I, however, get fed up with medical professionals (both doctors and nurses) who regularly treat me as though I am imagining whatever symptom it is that has made me contact their office. Never is there an "oh, you are right...you do have a UTI" rather a remote and stereotypic "a prescription has been sent to your pharmacy." I may not be correct, and I don't think I am paranoid, but I really think that they see my age on the chart, the white hair on my head, and not the human being seated in front of them. I hope those of you reading this have NOT had similar experiences. For me, it now seems like a never-ending fight between me and the medical profession, and this was not the case in the past when I was much younger.

Some time after my mother had had whole brain radiation for her brain tumor, whenever there were new symptoms (and there always seemed to be new symptoms), we all wondered whether they were caused by the radiation or the cancer. Bottom line was that it really didn't matter which was the cause; what counted was whether -- and how -- she, and her family, could deal with them. So there's that.

Absolutely the best person I had the pleasure of interviewing on this subject was David Oliver, whose video blogs about his cancer, and his feelings about his own mortality, are a beacon. I recommend them highly, particularly when he talks in his last couple of blogs about how he felt increasingly separate from his body.

The above post by Dee touched me. I am an RN, and have worked in many different critical care settings. I am now 72, and after being a hospice nurse for a while I now work in a skilled nursing facility. The place I work in is the best facility of its kind I have seen, and I am proud to work there. What Dee describes about her treatment, and how medical people view her, is a reality. And I have been guilty of thinking about patients (and elderly folks in general) in the way that Dee describes. But that has changed. As I get to know each of my patients as individuals, and consider all they have been through, and learn to LISTEN, my perceptions have changed. When I am in my own doctor's office, if I don't feel like I am being heard and respected, I ask the staff to stop what they are doing, and to listen to me. I am an RN and try to care for my patients in a holistic way, but now I am also a woman in my 70s with white hair.

I've had a variation of your situation, because I'm not currently dealing with a fatal illness. But certain symptoms of brain and orthopedic issues have me confused about whether these are permanent and I should just get used to them as part of a downward slide or whether I should attempt to have them "fixed." Thanks for continuing to write to us

I think we older women often find that symptoms aren't taken seriously by doctors. My sister, who is 84, recently went to the emergency room with heartburn and back and chest pain, after I made the call to 911. The excellent doctors there found an artery 95 percent blocked and inserted a stent. This was after a visit 2 weeks earlier to her cardiologist and several months of increasingly debilitating loss of energy, shortness of breath, and risk factors such as diabetes and an autoimmune disease requiring daily prednisone. Her cardiologist was aware of these symptoms. We have excellent health care in the Seattle area but we still need to be squeaky wheels in advocating for ourselves. It is also helpful to have an advocate who will listen and make the decision that an emergency is in progress, even at the risk of a false alarm.

Remember the Red Hat Society? Maybe we need to start the Squeaky Wheel Society!

Even in this time of death cafes and euthanasia, people are still afraid to talk about death.
We had a death cafe here recently. I didn't go myself because honestly I have little patience with the average person's concept of death and dying.
But I did overhear a couple of women talking about why anyone would want to talk about death. "Why be so gloomy, blah blah."
Does OHSU have support groups for cancer and/or dying patients?

Laughing WITH y'all. You have to have humor about this stuff. Yes, even dying. My mother who I cared for in her last year and really had my first close time with, was hysterically funny about the trials and tribulations of old age, illness and yes, even death. Those conversations were a great help and comfort to me when she did reach the end. But what I really wanted to say was that when I ran out of patience (no pun intended) with my PCP, I told him rather strongly, that old age was not a disease and that he needed to listen to me. That I wasn't expecting a cure. I was however expecting assistance in maintaining the highest degree of functioning for the longest possible time and then an unheroic death! That stopped him in his tracks. We're chatted. He improved!

Thanks so much, Judith. Your response, and your comments about changes you have made, are consoling to me. Maybe I just haven't had the guts to speak out when things go south for me. I think I will print your response and keep it in my day book as a reminder that I also have some responsibility in my interactions with health professionals. Thank you.

Wow, today’s post and the great comments made me laugh and cry at the same time. We really ARE all in this together, aren’t we?
I thought I finally found a doc who really listened. She had recently joined a busy practice in Seattle after being a fly-in bush doctor in Alaska for years, and just radiated warmth and interest. Over time I watched her get more and more flattened. Maybe by the endless days full of 6 minute appointments with people who were ill and in pain? Who knows, she breaks my heart.
I had lung cancer, Stage 3. 50% survival probability. Surgery and chemo then back to work, where I learned that my boss had been living with breast cancer that never quite went away, for years.
It’s glorious to be given extra time, and utterly bizarre to live so immersed in “I don’t know”. I don’t know what’s causing this particular pain or runny nose, what to expect from the near future, or sometimes what my name is. But what’s truly odd is that I never knew, but also never thought about it before cancer.

Yup, Ronni, whether it's old age, or "something really wrong," it's a challenge to be old, and/or dying. On a good day when I can garden and paint, all's well. But I notice more days lately where I feel overwhelmed by all that needs doing, and running behind the eight ball. It's scary sometimes. I am realizing that if I remain here in my beloved rural home, I will need to become calmer about tornadoes, and things not being up to code. For me, meditation, painting, gardening, my dog and a few friends are my lifelines.

I immediately felt a real kinship with all the above comments! Especially the one about "he felt increasingly separate from his body"! I've felt that same detachment for many years. My body houses chronic anemia, low to almost invisible thyroid. One doctor jokingly told me to "Lie down, you're dead!" when he read my thyroid and other lab reports.

I've always said that my brain was dragging my body along behind it. Old age and decrepitude have just magnified all of that. Of course, losing my large intestines 3 years ago didn't help and neither did unsuccessful surgery on one eye. At age 82, things just keep getting a little tougher every day.

It's definitely true, "Old Age 'Aint for Sissies"! But being of a sturdy West Virginia mountain born and bred stubborn nature, I refuse to give up too easily!

Ronni,
I'm now 86 years old. Nobody I know of in my family lived to such a ripe old age. So I have to assume that I will soon be heading off into that mysterious region we all wonder about.
As for me, I believe in the "Lights Out" theory. That is, when you pass, that's it. No angels nor heavenly harps. You're just gone and that's all there is. Lights out! It would be nice to find out that I am wrong, but I doubt it.

In any case, at 86 I think I'm just about in the same situation as you. Although I don't have cancer (as far as I know) when you are 86 you know the end is near even though you don't know when it will come. I prefer not to give it much thought, and I guess that's my way of coping with impending death. I hope I live into my 90's and die quietly, preferably in my sleep.

Something happened to two prior posting attempts, so this is Try #3. One other thing I hadn't counted on in old age is inadequate pain relief. Overwhelmingly, old people use their medication responsibly. We had nothing to do with creating the so-called Opioid Crisis, but I'm sure I'm not the only elder paying the price of government's "punish pain" policies. I have no desire to spend my last months/years zonked out on drugs, but on the other hand, I would be more functional and able to do a lot more--including find some joy in whatever time remains--if I were a "3-4" on the pain scale instead of a "5-7".

I really like Meg M.'s approach and may try it on my latest 30-something physician. She's been in practice for 2 years--2 years!!

The longer I live, the more I understand how frustrating it must be to be a researcher in healthcare. How does one isolate the real cause of a symptom? For example: at age 80, I contacted my physician's office because I still had a sore throat, runny nose, chills, and coughing 31 days after coming down with a common cold. Imagine my surprise when they insisted I come in to see my physician. Following evaluation (looking at ear/nose/throat, taking blood tests), she had them give me a shot and a 10-day course of antibiotics for the throat and a prescription for cough suppressant for my seasonal allergies, of which I had previously had no knowledge.

How do they do it? Multi-variant problems are hard. I stand in awe when healthcare workers can get something right!

Almost my favorite subject these days - I just turned 95.

What happens? People who come back from near death talk about going through a tunnel, bright lights and friendly people waiting for you. Sounds kind of like birth to me. Sounds like we come and we go. Nature's cycle.

If life seems pointless at times, that seems better than this.

.


Frank Ostaseski, the co-founder of the Zen Hospice Center, wrote a book called The Five Invitations, Discovering What Death Can Teach Us About Living. I’m thinking you might find this helpful.

IF A DOCTIR COLD SEE ME MOVING AROND IN THE HOUSE

If a doctor could see me moving around the house (especially in the morning) maybe he,d understand when I say "I am extremely exhausted' I was hoping he would find out what is wrong with me. I give up!

Now I realize it just old age and these parts are breaking down and the repair shop can not do anything about it!

Today's comments tell it the way it is. It did make me feel better reading everything people had to say. I agree with all of what you said.

Ronni, I admire your strength, courage and all you do for us oldies.


At age 80, I too have the runny nose problem whenever I eat something.. My doctor diagnosed it as "gustatory rhinitis." I asked what that meant. He said, "it means your nose runs when you eat." So be it!

I have several large boxes of those small tissue packs that my husband and I carry around for him everywhere! His noses runs when he drinks beer and/or eats! never heard of "gustatory rhinitis" but will check it out. He had chemo before and after surgery and then radiation, so who knows if any of that contributed to the runny rose. He swore it was the hops in the beer... but now I will have to notice if it happens when he is just having tea!

Believe me, there are MUCH worse symptoms to have, which most of us know through experience. However it is annoying.

Happy 95th birthday, Charlotte Dahl!

Very best wishes to you.

Here's to "bright lights and friendly people", wherever we may find them.

I live in a assisted living facility surrounded by nearly 200 old folks. And now that you mentioned it, next to Styrofoam coffee cups, Kleenex disappears faster than any other commodity. Could this be a prelude to something?

Boo to runny noses! They make life using supplemental oxygen much more complicated than it needs to be.

Boo also to nausea, which is a new thing for me. It doesn't help to swallow all the right pills at the right time if you throw up half an hour later and then can't swallow anything. That's what hit me yesterday. I figured out an emergency plan to adapt, and tonight the nausea has faded some... touch wood.

Ronni....omg. I have not read your post in a while because I have a new little grandson who is keeping me very busy and I barely get to my iPad anymore. I am happy to hear that things are going well and that this chemo is working. You’ve been through a lot and yet here you are still fighting the good fight and as you said feeling reasonably good as each treatment progress at this which is usually not the case… Well it wasn’t in my case. I felt worse as chemo went on . I am currently listening to a new podcast and following a young beautiful woman name Kate Bowler. She was diagnosed with stage for metastatic cancer at age 35 and now at age 38 she is working with this hand she has been dealt. The best she can… With a young child and married to her high school sweetheart. She wrote a book called “Everything happens for a reason and other lies I’ve loved.” It was such a great read for me because in it she talks about her diagnosis and her treatment and her anger and her grief at losing her old self and not knowing what will happen in the future but she also talks about her love of every day things especially her son and now her new found voice as a speaker for people with cancer. She is actually a professor of divinity at Duke University. She also wrote another book called Blessed about mega churches and even though she’s a Christian she talks about her sadness at watching poor struggling people being led to believe at these million dollar mega churches that if they just pray hard enough and give enough, they can be rich too. I am clear of cancer for a year and a half. She will continue to be stage four and continue to have treatment for as long as she’s here, but she is so inspirational in her outlook as to what she can still attain while she’s here… Not financially but how she can make her life and our lives better by her beautiful words . Ronni I think you would enjoy her book, her blog and her podcasts.

In my experience, beware the doctor who, when they hear your symptoms, says, "Well, at YOUR age..." All downhill from there.

Honestly, my vet had a better reaction to one of my older dogs: "Age is not a diagnosis."

Go figure!

Late to this, but want to second the recommendations for the Katy Butler book (very san francisco bay area though) and Kate Bowler on the prosperity folks.

And I'm still early in my aging trajectory, but at 71, I've had the runny nose for years. Wonder if this afflicts women more than men?

I can't explain it either. Shortly after getting up in the morning, I want to keep my handkerchief handy at least until lunchtime. We are having a lot of pollen in SoCal at the moment, but I've been like this for a while now. It's just that during cold/flu season everyone seems to regard me with suspicion.

I am only 70, but my (somewhat younger) husband and I live with and care for my still-spry 98 year old father. In addition, my beloved younger sister is living with stage 4 colon cancer and is on the other side of the country, fortunately surrounded by a loving and supportive community of friends and other family (her daughter who is in college). I have started to realize that I will be that last of my generation left in the immediate family. So even though I so far have no serious illnesses, I find myself thinking about end-of-life more than I ever have. It seems that only when faced with imminent or recent loss do we really confront our own mortality. I lost a brother and sister in their 20s as well as my beloved cousin from AIDS in his 30s, as well as my mother, aunt, and more, so I'm familiar with this phenomenon. As a wonderful poem in this week's New Yorker says, when we are at death's door, will we be able to say we lived or that we lived through. I really appreciate having this dialog with others who are not afraid to say the word death.

When my longtime older Dr. died I knew I wanted a younger Dr. who would likely care for me the rest of my life. I thought it was important, and still do, that my Dr. know me when I was active, before aging and/or illnesses might start to take a toll on this body. (This can be an issue for older people relocating to new staffs, doctors who never knew what they were before illness and aging. What could we do to address that problem? How about preparing a little one page bio, maybe with a picture to give new Dr.?)

I’ve lucked out with a Dr. with whom I also had a professional relationship when I worked, who truly listens to me and spends time. But he is also disappointing in that as Darlene describes, he has more of a prescription-writing and referral approach in instances when might not be necessary for some doctors. He also is too quick to prescribe the statistically newest popular so-called preventative meds than I like or my old Dr. would have ‘cause we shared cautionary views on that subject.

Fortunately, my Dr. now and I have an open relationship and I keep up on meds pros and cons prescribed for me, so have not taken two of them he pushed as I concluded fine for some but not appropriate for me and why. Within a few years my position proved to be justified and one med has even been taken off market, subjected to lots of lawsuits due to permanent side effects that put a nurse friend in a wheel chair who didn't follow her better judgement though she and I had discussed these issues.

Dr. does have special geriatric training but has occasionally mistakenly jumped to conclusion dismissively attributing a couple issues symptoms to statistics associating them with a diagnosis — because they occurred at my age for many — when I knew that wasn’t what was happening to me. Bottom line is everyone needs to inform themselves, to also know their body, be sure to tell your Dr. If you’re not following his directives, but make some common sense judgements on your own.

At least one person I know has my Dr., too, and had an excellent experience with him for herself and her husband as Dr. treated him through terminal cancer, dementia. She observed before I said anything that for herself she was sometimes frustrated that he was too quick to write prescriptions or make referrals rather than offer treatment recommendations, making her reluctant to see him sometimes.

I think some of frustration today is a reflection of health care system changes itself and with Medicare guidelines, reimbursement practices, possibly with the implementation of ICD 10 which took effect the fall after I retired. I think many Drs are disillusioned with how they can be pressed to work in some groups just as I was aware was present in the difference between service provided in rehab contract companies therapist-owned vs non-therapist businessperson owned companies. Even some therapist-owned companies as was one run by a P.T. from another country could have a higher priority on business than warranted.

Also, of serious concern is that there’s a shortage of doctors/nurses/medical support disciplines with individuals having lower levels of training being expected to provide services that once only higher trained professionals were allowed to administer. Unfortunately, some workers don’t know what they don’t know. There are going to be more pressures on Medicare funds in years to come. Hopefully, issues that have become a problem health care workers in the single payor Great Britain, possiblyCanadian systems have now — under funded, under-staffed — with complaints of increasingly too long for treatments and surgeries — especially can be felt by older patients with serious ramifications — this is what we must insure is not allowed to happen if we get similar one payor system here. No cookie-cutter approaches or one-size fits all ‘cause the numbers say so. Can we count on a Congress that cares or a President that cares, too? And those that prescribe Medicare rules need to be knowledgeable.

Guess I’ve gone beyond issues you brought up, but health care matters to think about. Am glad you’re getting such good treatment with doctors, nurses and staff at OHSU. I think by and large the health care people I’ve encountered genuinely care about each patient and often do have a unique professional yet personal relationship with them due to the intimacy of the work that occurs.

Early on when I started working with adults, discovering they and I made varying degrees of emotional connections, I made the decision to not attend funeral services since some were terminal cases of all ages, not just the aged. I just felt attending a funeral for one would obligate me to do the same with all and I had to have emotional limits for my own mental health.

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