Independence Day 2018
INTERESTING STUFF – 7 July 2018

Caregiver Friends

As I write this on Thursday, it is late morning. I have just returned from the Oregon Health & Sciences University (OHSU) campus on the banks of the Willamette River in Portland, Oregon.

While there, I was given the last of five, weekly, liquid-iron infusions meant to knock out the anemia that has slowed me down for several months.

It will be a month before there are blood tests to assess the outcome but meanwhile, I have felt a big change in my energy level.

When the anemia was diagnosed, I was lucky to vacuum one room without breathing heavily and needing to sit down for half an hour. About three days ago, I vacuumed the entire house in one go, hardly noticing any exertion.

These infusions took place at the same clinic where, for three months last year, I was treated weekly with chemotherapy for pancreatic cancer. That, combined with the internal bleed that took several months to fix, are what led to the anemia.

One more recent item: Last Monday, at the Marquam Hill campus of OHSU, I underwent an FNA - medical jargon for Fine Needle Aspiration: that is, a biopsy of a lump on my neck.

The lump has been there for a long time – more than a decade. It was small and didn't bother me so I ignored it all that time. Then, in the past few weeks it has changed, enlarging a great deal during the day but returning to its small size overnight.

Whatever the diagnosis from the aspiration, there will undoubtedly be a visit with the physician who ordered the FNA along with a few already-booked appointments over the rest of the year with other doctors who track this and that resulting from the cancer and surgeries.

Overall, since the pancreatic cancer was diagnosed in June 2017, I've met with about two dozen doctors along with many more nurses and other health care aides during uncounted office appointments and 25 days – give or take - in hospital over the past year.

If you have read this far (who can blame anyone who hasn't), let me tell you the reason I have recounted all this. In so much time together, some of these medical people have become friends in a certain kind of way with which I have no experience. They make a big difference in my life; the reason for an appointment aside, I always look forward to our visits, to chatting with them, to getting to know them a bit better each time.

Now, unless or until something goes terribly wrong with my health again, I will be seeing them far less frequently and it struck me hard this morning how much I will miss them.

“Good morning, Ronni,” said the woman who checks me into that infusion lab every time I'm there. “Full name and birthdate?” (She have their rules.)

“Hey, Ronni, it's been awhile,” said the CNA who checked my vitals. “Did you have a good holiday?”

“Yes,” said I, “and how did that cute daughter of yours like the fireworks?” I asked. He had shown me photos of her in the past.

“What's all this bruising on your neck, Ronni?” asked the RN who was hooking the infusion line to the port embedded in my upper chest. I explained about the FNA and she said such lumps are often not important.

Another CNA and a couple of other RNs waved and said “Hi, Ronni,” as they passed by my chair on their way to their patients.

These professionals who have helped and attended me this past year have become as familiar and important to me as the employees I know at the supermarket, the pharmacy, several restaurants I patronize regularly and even the FedEx delivery guy. Part of the rhythm of my days.

It seems to me there are concentric circles of important people in our immediate lives. Most broadly, they start with family and closest confidants; continue to good friends far and near; some neighbors; followed by the merchants and service people we see in our regular rounds who are part of our communities.

(Somewhere in the mix are co-workers but that diminishes a good deal when we retire.)

Because I had the great, good fortune to be so remarkably healthy for 76 years, I hardly ever saw medical professionals and then, not frequently enough to know about their families, children, books and movies, other interests, etc.

So this is a whole new set of people I know and like and with whom I have more personal conversations than I ever will with my closest friends.

I mean, I don't get naked with friends. I don't have detailed conversations with them about the nature of my bowel movements which my OHSU helpers have taught me to do as easily as I discuss the weather with anyone else.

And with a couple of important exceptions whom I cherish, I don't laugh as loudly or as long with friends about the ironies of my newly intimate association with my own death as I do with OHSU companions.

In a manner similar to friends and neighbors but different too, I look forward to seeing them each time. I had no idea this would happen and as my visits to OHSU become fewer (god willing), I will miss them.

Talk about ironies...


Comments

Those of us who are "fortunate" enough to see the same medical professionals for an extended length of time are bound to develop feelings for them, even if we eventually say to one or another, "I hope never to see you again." It's no wonder that you are feeling pangs of incipient loss. However, it's surely a sign of healthful progress. Go, Ronni, go!

I totally understand, Ronni. My husband and I just concluded 4 years in an Alzheimer’s study. Those sessions involved neurocognitive testing, physical exams and much probing and sharing about our diminishing abilities, both mental and physical. We were each others’ partners, so it involved lots of “snitching” on each other as we watch each other age.

We shared personal information and the tests were often grueling, but they made it doable. They all became good friends we probably won’t be seeing anymore. I’ll miss them. And I’m so glad they were there. As I know you are, too!

Lovely.

As someone who’s had a lifetime of taking iron supplements, I can say that on the plus side of your week long iron infusions, you can now take all your refrigerator magnets and stick them on yourself, thereby freeing up the fridge for that ever present, and so important, "To Do" list. Just a thought...

Although I have never had the bad fortune to need health care at the level you have, I understand your feelings toward your caregivers. I miss my first cardiologist, who moved to your area soon after becoming my doc.

Always finding yings and yangs, big or small.

While all the angst of life being 'bigly' disrupted because of major inhumanities by the Republican Congress and drump , it's revealed my inabilities or capacities! for discovering tolerances and strengths not known before.

Also introducing a fondness for marches and a realization of the world's need for understanding, compassion and especially respect for others who are and live unlike one's self, and that's a terribly tall wall to climb.

So while wanting or fighting for a laudable, necessary goal, accepting what is reality and appropriate offers creative thinking, the capacity to scheme and use anger for achieving worthy ends.

And obviously, it's leading me to try all kinds of stress-reducing methods. Dammit!

Sorry - this really is off-topic though it kinda pertains to self/world-caregiving?

"...on the plus side of your weeks long iron infusions, you can now take all your refrigerator magnets and stick them on yourself"

Claudia D/Hudson Valley: that's the best laugh I've had all week.

I think it's wonderful that you've got close to a whole bunch of people who have cared so well for you.

Like you (we're the same age) I had good health and rarely needed to see medical professionals. All that has changed in the last 3 months: I am well and truly in their clutches with lung cancer, and already I feel very attached to the pulmonologist. I hope I have as caring experiences as you, Ronni, as I progress through the system.

They become a very special kind of friend. My primary doctor and I discovered we share a love of Asian films and compare notes each time we visit. We both have subcriptions to Dramafever (Chinese and Korean films and TV). I see her every 3 months now and miss her. You'll miss them Ronni when you don't need to see them so much, joyful and sad at the same time.

It all comes down to making a life wherever we happen to be. This is the ultimate in acceptance, Ronnie. If you'd gone inward and withdrew, your experience would have been completely different.

Kudos!

Your Forever fan,

Karin

I feel exactly the same way about my caregivers. All of them. But the ones at the Breast Center are special. Those folks saved my life. Their care and concern made them as close as family. I still see my oncologist every six months, but it's now been three years since I've seen all the others. I miss them!

Ronni, looking forward to hearing about your weird lump that enlarges during the day and recedes at night. How strange! (Forgive me, I'm just big on medical mysteries.)

You are "lucky" to have had such fine medical support. I remember some of my husband's medical people with great fondness, others not so much. One cried when I told her my husband had died, and I wrote another a note of thanks. Toward the end, I recognized the receptionist staff at the ER and would greet them. A variation on blessings in disguise.

Glad you are doing well with more energy, Ronni.....this post reminded me of my upset yesterday upon learning that my eye specialist is out of the office indefinitely "due to a bad fall".

He installed a drain in my left eye, a Zen glaucoma stent, on May 22 that has lowered my eye pressures to a safe level. We planned on getting the same stent for my right eye in "2 or 3 months". So not only am I concerned about his health and well-being for his sake, but also for my eyesight. I trust him implicitly and he has won many awards for being the best eye surgeon in the county.

He is 60 years old and the last time I saw him, 3 weeks ago, he told me to 'watch my step' as I was getting out of the exam chair....I felt miffed but now I know why he said it as my friend told me that 2 years ago he'd had a skiing accident, a fall, that laid him up awhile.

Our caregivers are not immune to the same injuries and accidents that can happen to all of us.... the slings and arrows of outrageous fortune. Ya'll Be careful now, ya hear?

Love you, these caregivers, and your writing so much. I have several doctors, nurses, and specialists who I know I would be seeing regularly as friends if they hadn’t met me in the medical setting first. They are special people. We make each other laugh. We finish each other’s sentences. I think these happenstance intersections of care — the genuine kind when you really get to know and understand one another — are Devine. <3

I meant divine! Can’t seem to edit comments. Oh well you know what I mean!

A different kind of intimacy! You are blessed, Ronni, with excellent, caring medical practioners at all levels of care. I had a very different experience when Dad had his stroke. There were a few exceptions.

What a delight, how you really consider your care givers, I think they know that and respond to it. I think they will miss you too. When I had my hip replaced I wrote every care givers' name from the two days in hospital. The desire was strong to send each one a card thanking them for their kindness and professionalism. Alas, at home again, I was busy figuring out how to clean the cat box, do the laundry, warming food and cleaning up, and then thrilled and exhausted from visits. The cards slipped behind me, and thinking of it now I still am sorry. So don't be shy, tell them you'll miss them! (ahem, if you want to, that is.)

I get it, too, having been to all the treatments and therapies my husband when through after his stroke. These people in the medical community see a whole different side of you than your friends. They see your strengths and weaknesses. They give you encouragement and permission to laugh in strange places, and use dark humor that can upset your 'normal' friends.

My warm thoughts to you, Pamela, for good care, caregivers and eventual recovery. Take care of yourself.

Jeez, I had anemia a couple of years because of H. pylori. It was terrible! Best wishes for all that. I have terrific doctors and am so very grateful for them.

I don't know, but I imagine it must often be a tricky thing for medical personnel to be professional and somewhat detached, whilst simultaneously being overtly warm and empathetic.

You are fortunate to be under the care of individuals who see you not just as a patient, but rather as a fellow soul walking on this Earth. I like to say, They saw the Buddha in you. No wonder you will miss them.

Ronni, it sounds like you have a wonderful care team, and I'm happy for you. You certainly deserve the great care you got. No one facing a life-altering diagnosis deserves less than good care--but I think that's often what they get. So far I've been fortunate not to become intimately involved with the "medical industrial complex". The locally-owned HMO my husband and I belonged to for many years was bought out last year by a bigger conglomerate-type HMO, and patient "care" has deteriorated as a result.

I have a new doctor (the doc I'd had for 10+ years left abruptly right before the buyout became final). She is competent and nice enough, but the approach is more impersonal now. That, along with new pharmacy regs that treat patients who need certain meds feel like criminals, can make getting care a pretty unwelcoming experience. (IMO, the Deplorable in Chief, aka Herr Drumpf, is pretending to combat the "opioid epidemic" by using his usual law-and-order approach--for everyone except himself and his minions, of course--to deprive legitimate patients of pain relief and dignity rather than allocating funds for expanding access to treatment for those who need it.)

If, perish forbid, I should be diagnosed with a serious debilitating long-term illness in my 80s, I would have to think long and hard about how much treatment I would be willing to undergo in the hands of this new system.

Can appreciate the thoughts and feelings you’re experiencing from the opposite side of the picture, working in the healthcare world. I found individuals with whom I interacted in various rehab activities communicating and relating to me and I with them similarly, in the unique intimate manner the situation creates. Interaction may not even always be rosy, but that’s usually understandable, too. Health care for most of us has always meant caring for the whole person — they are not just a case, or the medical issue they’re experiencing. Whatever you’re feeling, the feelings are likely genuinely reciprocated.

Unfortunately for us we don’t always know the long term outcomes for some of those for whom we’ve provided services. Even years later we recall them and will wonder about their lives. Once in a rare while we may encounter them in the world outside the medical setting, long afterward, and we each remember the other and what we shared in a way no other can ever fully appreciate — especially when life and death issues are involved.

We don’t always hear expressions of gratitude, or have an opportunity to wish someone well when they leave our care for a variety of reasons, but that’s okay — we all know that, in fact, we’ve each made a difference in each other’s lives.


Thanks to Simone for your warm wishes. xxxxx

Late to the party again, but I was struck by the comment you made about the concentric circles of friends and acquaintances you've discovered due to your treatments, etc. Just today, July 7, as part of NPR's TED Radio Hour " Networks" themed broadcast, the anthropologist, Robin Dunbar used nearly the very same analogy to describe his Dunbar Number. It represents the limit of 150 people that make up a human's acquaintances who are familiar enough for conversation. It also turns out to be an average of people's Christmas card lists Facebook friends, and the usual population of villages in olde England as well as other tribal units.

I've gotten acquainted with a group of nurses during the past 7 months of twice weekly dressing changes on a stubborn leg ulcer. I haven't gotten very personal with more than a couple of them and look forward to never having to depend on their ministrations again. Perhaps my lack of warm fuzzy feelings toward them is the result of my frustrations and disappointments with the treatment which is much longer than previous wounds have taken. After doing some deep diving online into wound treatment, however, I've decided that they and the podiatrist who honchos the outfit do know what they are doing so I'm going to adjust my attitude.

I'm glad your recovery is going forward and that you have such a wonderful medical tam. Long live Medicare and affordable back up!! I can't imagine dealing with the medical challenges of aging without them.

God (Buddha/Muhammad/Heaven-in-general) willing, indeed! There are few in one's life who can listen as carefully and understand as well as a professional caregiver when one needs that special extra dimension. Glad that you have crossed paths with such great people when you needed them. Fingers staying crossed.

Just clicked onto yesterday's post as I catch up with my reading and saw the GREAT news about the Warthin's tumor! WOOHOO!

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