Heartbreaking News…

Earlier this week, Jimmie and I attended Spamilton at the Kirk Douglas Theatre. It’s the first time we’ve been to the theatre together since we went to see Punk Rock at SDA almost a month ago. In all truth, we hadn’t been planning on attending the theatre again together not because we loathe the theatre or spending time together, but because the Circumstantial ROI of our theatre outings has become negligible for Jimmie. You can read here about our last Broadway Adventure.

The schlepp to the theatre is fine. We enjoy each other’s company and it’s nice to get out and see our adopted city’s sights traffic periodically. Assembling and disassembling Jimmie’s magical scooter is fairly automatic – no waving of the wand (that would be welcome technology, please), but it’s manageable. The logistics are surmountable. But when you can’t hear the play, what’s the point of surmounting the logistics?

Once we get to the theatre, sure, I have a moment of terror when Jimmie heads into the men’s room and I lurk by the door, craning to hear a thump and to ensure that no one takes his scooter for a joy ride. Other onlookers frequently are kind and offer an arm to walk him in and out of the men’s room. But I still look like some kind of perv, which is awkward.

Last night as I lurked before heading into see the show, I got a text from one of my friends from the spin gym where I have been a member for about four years. I had missed the email from the founder of the gym, which was entitled “Heartbreaking News…” In the brief email, she spelled out her reasons for the upcoming abrupt closure of the gym – on November 22nd. My phone lit up with other messages from friends I’ve met and gotten to know at the gym. I was completely distracted throughout the time leading up to the show, and immediately afterwards, restored my phone to see more communal wailing about the closure.

Heartbreaking News…

The power of words.

Since I wrote the last two posts, I’ve discovered people’s hunger to discuss and share the issue of giving care to our loved ones. A half dozen people have approached me to share their own stories, proving that we humans have a lot going on in our lives that isn’t necessarily visible in our daily comings and goings. Many people are shouldering their responsibilities at work while also carrying untold pounds of personal grief or struggle at home. And we don’t talk about it in any kind of direct way. We hide it as though it’s something to be ashamed of when it’s not. It’s just completely a part of our lives. We carry it because we want to, or in some cases, we need to or have to.

Tuesday, Jimmie and I visited the doctor after he experienced drainage difficulties in the morning, which I was able to help him solve with some of the medical equipment I had left over from over a year before. Note to self. However much you relish the idea of a personal bonfire to eliminate the traces of your medical mishigas, you should resist. By saving two boxes of single use catheters, I saved us a trip to the ER and missing a lecture. And yes, I know you were all asking yourselves,

What was she a girl scout or something?

Just as you shouldn’t get ahead of yourself in medical equipment armament, don’t Konmari yourselves into an ER visit as your situation changes.

Our visit to the doctor was late in the day. When we came in, he was in a hurry, and unfortunately hurry isn’t in our repertoire anymore. Jimmie inadvertently scooted into the wrong room requiring me to use my air traffic controller batons to steer him into the correct one, where the doctor did a quick ultrasound. As Jimmie stood to get dressed again, his back was facing the doctor when I asked him about the biopsy results.

The doctor, lowering his voice, quietly said,

Oh, They didn’t tell you? There’s aggressive cancer in the prostate.

I looked at him, incredulous. Did who tell us? This was his surgeon speaking. Also, I couldn’t believe that he was trying to tell me this without including Jimmie, who is extremely hard of hearing and facing the window while he pulled up his pants. My bossy sister emerged.

Oh, no. You need to tell him this directly.

And in my loud, most comely voice, said to Jimmie.

Jimmie, you need to turn around. The doctor has something important to tell you.

Jimmie turned and the doctor delivered the news. Again, he was still in a hurry, not that he was being unkind or elusive, but this was his last appointment before heading over to the adjacent hospital, and the details were brief.

Aggressive prostate cancer. Hormone therapy.

The power of words. When Jimmie stood up from the table, he caught his leg on something sharp, and as I hurried to help him with his pants, the doctor and I both watched as two small blooms of blood developed on the back of his khakis. He quickly applied gauze and tape, and then Jimmie and I executed the extraction of the scooter from the office.  Everything else about the exit from the office is fuzzy. I can’t speak for Jimmie, but I was in an emotional blackout.

The next twenty-four hours moved in a blur. We decided to go to Spamilton to take our minds off the unknown.

The follow up appointment with his GP two days later calmed us down. He confirmed that the entire tumor board of the hospital had reviewed Jimmie’s case and were unanimous in the treatment plan. Somehow hearing that was a comfort. Prostate cancer is slow moving.

Heartbreaking news…Aggressive Prostate Cancer. These word combinations are tough to read but it is our reactions that are our own to manage.

In the case of the closure of my gym, the truly heartbreaking news was that I had already paid for my 2018 membership and have yet to hear back from the management about a refund. If I am honest with myself, I had been thinking that I needed to change up my workout plan. Spinning, as good as it is for cardio, is boring. I’d been thinking I’d like to try pilates, or something else. So barring legal issues getting my membership fee back, while the news is heartbreaking for all the spin instructors at the gym and for the convenience of having my gym within 400 paces of my front door, these words can be managed.

In the case of Jimmie’s cancer, we will move forward with treatment, and take it a day at a time. Lord knows we are practiced in that. And we even have more theatre outings in our future. Last night we attended, heard and enjoyed Circle Mirror Transformation to see the MFA Y2 Actors in the Scene Dock Theatre. Tonight Eurydice is on the ticket.

This morning I got a text with some photos from Chris.

A bear broke into my truck last night

Now that’s heartbreaking. Especially given how much the truck has meant to Chris.  But that’s why we have insurance.

I’m grateful to be blessed with all the things we have. Good enough health to be able to attend a gym on a regular basis. Good enough medical care to help us through this crisis that Jimmie is experiencing. Lots of loving support from family and friends as we go through this ordeal. Good enough auto insurance to repair Chris’ truck. All of it is surmountable. As Chris texted me this morning, “This too shall pass.”

Heartbreaking News…Aggressive Prostate Cancer…Bear in the Truck. The power of words do not render us powerless.

And in the meantime, it seems fitting that Thanksgiving is right around the corner.

 

Piss Mas Eve, A Caregiver’s Story

A positive update. Jimmie’s recovering well from the dreaded P surgery two Thursdays ago. For those of you who are recoiling from my TMI posts, please just go back to reading posts with puppies or politics or whatever makes you to feel better or worse. Lord knows that there is enough suffering in the world to avoid posts about peoples’ personal plumbing perils. By the way, tonight is Piss Mas Eve.  Continue reading

Before Your Last Trip to the Outhouse, I want you to know…

Jimmie and I have been dealing with health issues of late. I should say Jimmie has been dealing with the health issues and I have been following along behind trying to keep up with the details. I choose to think about these interludes as romantic getaways, because hospitals let you stay over, and provide you with a folding cot which makes your back feel the way it looks when it’s folded up during the day.IMG_8721.JPG

Four hospitalizations since August for the same man-plumbing issue have culminated in our most recent overnight stay at Good Samaritan after what is the surgery most dreaded by men. I have this on good first hand info from many of the men in my life who’ve had it and lived to tell about it. Ask any one of them what the worst word in the English language is. Starts with a c:

Catheter.

Watch them spit it out with disdain, a churlish look of scorn tinged with not a little fear. Watch their eyes dart to the left as their lip curls. P surgery, pee surgery it’s all the same thing in this case. But at 90, a surgery under general anesthesia is enough to get you thinking about death.

After the doctor left, having delivered the news about the upcoming surgery, we huddled together, Jimmie in the 1960s-era wooden hospital guest chair with the leatherette dun-colored seat that exhales like it’s farting every time you sit on it, and me, sitting on the edge of the bed, the sanguinating catheter bag huddled to our left like a resentful pet who has been ignored too long. Our conversation turned to the inevitable, which is, of course, truly the inevitable.

“The night my father died,” said Jimmie, softly, his gaze averted, “he went out to the outhouse up at the cabin in Maine. My sister Claire was there with Mom and Dad. He came back and sat down in the chair and then fell out of the chair onto the floor. Claire said she knew instantly that he was gone.”

“What did he look like before he fell over?” I asked, scanning Jimmie’s pallid face, so depleted from the significant blood loss over the past weeks.

“He looked fine. I think it was a happy time for him. He loved being up in Maine. It was a complete surprise. I always thought that’s the way I would go,” he said. “I don’t know if my heart will stand this surgery.” The other unstated message was that the recent events haven’t been a “happy time in Maine.”

That sat between us somberly, as did the knowledge of Jimmie’s older brother Jack’s untimely death from a heart attack and similar type of collapse. I felt my cheeks becoming hot. My optimistic, fix-it-all attitude was showing some pretty severe cracks. My rational mind struggled forward. “They aren’t going to suggest a surgery that they don’t think you can survive, Jimmie. Your cardiologist will evaluate your ability to withstand the surgery. It seems to me that the real question is whether you want to continue to live.”

This may seem like a really harsh way of asking someone, and I think it was, but I had just finished reading the Dornsife Magazine, Fall 2017-Winter 2018, the theme of which was “Grave Concerns: the Mortality Issue” so I was primed for the conversation. I looked into his eyes, still not looking at me, and he said, “Not if I have to live this way,” with no hesitation at all.

“Well, before your last trip to the outhouse, I want you to know….” I sought to convey my love and gratitude to him for our magical life of thirty-five years together, while nagging behind me was my arch nemesis and evil twin, Maude Lynn.

You’re overreacting, Els, she sneered. And as usual, she proved correct.

Jimmie took my hand, bringing it to his lips, and kissed it gallantly, as we professed our love for each other. “Let’s remember there were so many good times, and not dwell on these difficult times.”

I tend to be extremely pragmatic, accept difficult circumstances for what they are and move forward. It is a primary trait among stage managers and theatre people in general. But to be frank, looking directly at the loss of Jimmie and our life together isn’t something I feel pragmatic about. I prepared for this surgery knowing that Jimmie never expected to live past eighty; we’ve talked more than once quite frankly about death. He’s been more ill recently than I’ve ever seen, and the procedures he has been going through with this recent bout have created a new Jimmie, whom I have struggled to love as unconditionally as the old one. We prefer to be around people who are healthy and pleasant and upbeat. If that isn’t the case, you are probably in the health care profession. I so respect those in the health care profession; they don’t frequently get to see the old versions of healthy people, but dwell in the land of the sickly, frightened, enraged or deflated new versions of formerly healthy people. Earlier this week as I watched the RN in the Emergency Room working on irrigating the catheter, I said “It’s kind of satisfying, right?” Without hesitation, JP, a former youth hockey player, (we’d bonded about that earlier) now RN said, “Yes it really feels good to make improvements in the health of a patient.”

We recently changed doctors. Jimmie’s GP closed his private practice to reduce his working hours as he approached retirement. Jimmie’s new GP, is kind and direct and speaks loudly – either a result of his geriatrics training, or perhaps hearing loss from also being a musician (something I overheard him say rather loudly at his office during our first visit.) He described for us the romanticized Hollywood version of aging, a gentle slope of decline as you get older. He derided that fabrication. I watched him describe, his hands chiseling the air in a series of steps, that patients are more likely to go from a steady baseline condition, to an event such as a surgery, or a heart attack, or a hospitalization, after which they drop down to a new baseline. This process repeats and he said if he got to do a TED Talk, that’s what he’d tell us. This made a lot of sense. I’d prefer to hear it in a TED Talk than see it in my spouse.

Later that first night at the ER after Jimmie was admitted and settled into his room, I stumbled out of the hospital at 11:30 PM, exhausted after seven hours in the ER. The night nurse reminded me to bring Jimmie’s Advanced Directive to the hospital when I came back. I had, of course, forgotten. It took me two days to remember to bring it back with me. I didn’t want something written almost twenty years ago and hadn’t spoken of since to define our conduct should the need arise. Thinking about these choices is hard, but with the assistance of his doctors, we arrived at the decision to move forward with the surgery which happened two days ago. With a spinal, not a general anesthesia. They rolled him out of the operating room, and his eyes were open. I said, “Hi, Jimmie.” He said, “Hi, Els.” In retrospect, I keep thinking, “what was I so worried about?”

Every day we hear from family and friends, colleagues from work and we are buoyed by their support, their virtual hugs (Jimmie may be becoming a little bruised from all the passed along hugs) and the knowledge that this too, shall pass. Now that we are home, it’s my job to teach the new visiting nurses what medications he takes, and answer their incredulous question each time I open the door to a new person:

How old are you, anyway? (While looking down at their clipboards at Jimmie’s DOB).

We went to the park today and sat in the sun. Fingers crossed. Neither of us is ready for our last trip to the outhouse yet.