the scoop

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

Get updates delivered directly to your in-box

Monday, February 11, 2019

The stent is out! Yay!

(Really, there is no adequate way to express my relief here.)

Surgery has been scheduled: February 28. Probably very early in the morning, although it's unclear when "very" is.

Recovery time averages a day or two in the hospital, followed by a few weeks of "taking it easy," however that looks. (Thankful to not have toddlers!)

Since we're not doing the biopsy till after the surgery, I won't have pathology to report until a few days after removal. That will give a better picture of what follow-up will look like, but at minimum it will include regular monitoring of the Well-Behaved Kidney and His Surrounding Cohorts.

Adding new medical terms to my vocabulary by the day: nephrology. It's fun to say.

Oh, and here's a selfie of the bastard:



Thank you so much for your support through this. As always, my main concern is for the kiddos. So far, so good on that front; they know what's up - this will mark the end of a chapter, but the book is still open. Nothing's guaranteed in this life, and that uncertainty is difficult for anyone to accept, let alone a young person. Please keep them in your prayers.

Wednesday, February 6, 2019

Is It Really Any Question?

I guess it’s a big decision, and I don’t want to be flippant about it ... but I keep coming back to this:

"If a kidney lesion is a solid mass, particularly one that picks up blood and thus 'enhances' on contrast CT, it is considered malignant until proven otherwise. In the era of CT scan however, masses are found at a much smaller size than ever before. [...] 


Most patients will wonder why a biopsy is not routinely performed to differentiate between benign and malignant renal masses, and this is currently a controversial area in urology. The classic thinking has been that nearly 90% of all enhancing renal masses are malignant. If a percutaneous biopsy is performed showing malignancy, it actually has not helped the management of a mass in that, as a default, surgery was to be performed anyway. If the biopsy is indeterminate, as it often is due to lack of providing a large amount of tissue for review to the pathologist, one must still act on the assumption that cancer is present. If the tissue is read as benign, unfortunately this test has only an approximate 85% sensitivity, and thus cancer could have been missed. In all situations, a biopsy is a separate procedure with risks such as tumor spillage, bowel injury, hemorrhage and needle site seeding with cancer. Some centers feel that a biopsy can help grade cancer as high or low grade, thus making it easy to offer some patients with renal masses conservative management, but this has not become the standard. Thus, the decision to proceed with treatment is typically based on statistical likelihood and not an actual biopsy."

And so, unless any different evidence presents itself, I shall say goodbye to a kidney and hello to a hopefully speedy recovery wherein I can avoid hearing the C word for at least ... could I have like 5 years? That'd be awesome.

NOTE: I am currently miserable. I have a stent in place from the previous scope procedure. It is a tube running from my kidney to bladder, which causes me to feel a CONSTANT need to void, and all the pangs and twinges and aching which accompany that feeling. I keep hydrated as instructed, which presents its own problems--I'll let you deduce.

My current best friend.
The stent comes out Monday. I'm literally counting the hours. I hope, at that time, to have a better idea of surgery date. Thank you, everyone, for the cards, posts, and fantastic anonymous gifts ... you make me laugh and I appreciate it so very much.

The kids are okay. Ezra is stoic, for him, but also a bit more huggy. Audrey is attentive and a bit more considerate, which is nice :) They seem to have gotten past the extreme fear of the sky falling, and God bless them for being self-sufficient while I hobble around in angry pain.

Only 106 hours to go.


Saturday, February 2, 2019

The Good News and the Annoying News

Thursday I had a ureteroscopy to determine if my kidney tumor was of the connective tissue type, or the “meat of the kidney” type.

It has been determined NOT to be the former.

Oh, so it’s the latter then!

Well, not necessarily.

There is STILL a chance that my tumor is benign, and even something I was born with which has been slowly growing my entire life.

So this [barely new] information prompts us to:

  • do a biopsy of the thing, hoping it’s the benign kind, and therefore can be zapped in place to shrink, OR
  • take the whole kidney out, treating it as a cancerous tumor, because if it IS cancer, poking it with the biopsy needle could spread the cancer. 

It’s quite possible that removing the whole kidney and a post-op biopsy will reveal the thing is benign and I could have carried on with both my kidneys. It’s also possible taking it out will mean “whew, we’re so glad we caught that thing when we did.”

How am I doing? My brain and urethra are on fire, since you asked. 😜 I have a stent in place that will remain for a bit. Its presence tells my brain I need to pee. All. Day. And. Night. Except I don’t, and even when I do, it’s a painful experience. So. I’m a tad miserable, but that’s temporary (I keep reminding myself).

The bigger issue, of course, is the big decision. I’ve been second-guessing, but I’m still leaning toward taking the whole thing out. Why literally poke the cancer bear? I’ve been told lots of people do just fine in life with one kidney. Dr. K. says my “good” one looks healthy.

And in other news - you guys are awesome. Truly. I woke up from my procedure to an avalanche of well-wishes and wtf-ers (I love and appreciate both). The virtual hug I get from facebook (especially when I can’t really go out and about) is heartening and priceless. Cheers to you, friends.




Thursday, January 31, 2019

Seriously?

I will soon Konmari my left kidney. It has ceased to bring me joy.

In December, I had a raging case of sciatica. I reached out to a neurosurgeon because my leg and foot were going numb and tingly, and I know what that means (fun fact: I had back surgery at age 18. I looked up my surgeon and --sure enough-- he’s still in town, so I went back to him.). Dr. R sent me to physical therapy and pain management, hoping to head off surgery by encouraging my L5/S1 disc to go to its room and think about what it has done.

I’m intentionally burying the lead here.

Also visible on the MRI of my spine was a suspicious shadow. In the kidney area.

I was referred to a urologist. It took a month to be seen. In that month, I went down every possible google trail possible. I came up with everything from “harmless cyst that will go away on its own” to “metastases of cancer of the internal organs.”

Finally, on January 21, Dr. K gave me the news: Renal mass of the kidney. Approximately 4mm in size.

I’d read about this possibility. And I know about biopsies and cancer. With the kidneys, there is little utility in doing a biopsy, because

  1. Poking a tumor can cause it to spread,
  2. False negatives are a very real possibility,
  3. Cancer confirmation would indicate removal anyway. 

In some cases, a kidney tumor can be removed, and the healthy kidney tissue allowed to remain. However, based on my tumor's size and location, this is not an option.

And so, probably as you are reading this, I am undergoing a scope procedure which will indicate to the surgeon of which of two cell types the mass consists:

  • Transitional cell cancer (TCC) is a rare type of kidney cancer. It starts in cells called transitional cells. They make up the lining of the renal pelvis, ureters, bladder and urethra. [this will mean the surgeon must remove the kidney and some surrounding tissue/organs].
  • Renal cell carcinoma (RCC) is a kidney cancer that originates in the lining of the the very small tubes in the kidney that transport urine. RCC is the most common type of kidney cancer in adults, responsible for approximately 90–95% of cases. [this surgery involves removing only the kidney and can be laparoscopic].

Armed with the results of that scope (I’ll let you go ahead and do the math on how the CAMERA gets to the KIDNEY), we’ll have our course of action and hopefully a surgery date.

The good news: When kidney cancer is discovered, it’s usually from pain and blood in the urine. By that point, depending on the type, it’s likely to have spread and to cause complications which are exacerbated by the patient’s age (usually around 60). I’m an outlier; my tumor was found early, I'm "young," it has caused no symptoms, and it is defined and contained.

The bad news: It’s the Big C, back in our home. My kids must deal with this nonsense all over again.

                                             ~*~*~*~*~*~*~*~

As you know, I process things by writing, and so I will be back here in the near future. A few parting thoughts for today:

  • Up to this point, many of you have been kept in the dark. It is of the upmost importance to me that I protect my children from panic and dread, and until I had more information, it was pointless to get into “what-ifs” and “how are yous” with anyone outside our triad. The kids need to see that Mom is fine; this is DIFFERENT than before. Over the past few weeks we’ve processed the situation as a family, working through the shock and sorrow and fear and anger with no outside influence. We’ve been honest with one another, and I think we’re all in the best possible mental place we can be. 
  • There are a lot of questions about the future: the immediate -- recovery time, possible complications, etc., and the long term -- potential for recurrence, metastases, risk of other cancers, etc.. As we receive these answers, I will pass them along. No news is just that: no news.
  • "Take Rachel to her MRI and then out for dessert."
    I love these ladies.
  • I’m clueless as to what help I/we may need. I got pretty good at shining the bat signal when my hero needed assistance, but I’m not sure how this is going to look. What I CAN tell you is that I covet and appreciate your prayers, kind words, funny messages/posts, and concern for and care of my children. 


Monday, January 1, 2018

Writing About Not Writing, and the Intimate Moments of Death

I’m writing about not writing because when you can’t write, you just start. And then more follows.  

I’m writing about the end. 

So many times I’ve started posts in writing or in my head, but my own nature has disallowed me from finishing or publishing because of a sense of incompleteness.  I want things to be tidy. A timeline. I don’t want to talk about something that happened at the funeral and then something that happened in the hospital. But I realize, now more than ever, that things things should... must come out, and it’s not necessary that I tidy them up for you or me. 



We went to the hospital, to be admitted to hospice care. 

I’d like to say that it was a measured decision: he’ll die soon, and so we need to have round-the-clock care when that happens, to make him comfortable and do what needs to be done. It wasn’t that. I had reached my limit with observing and diagnosing and handling Ian’s decline on my own. In a very short time Ian had gone from eating and saying confused words for me to interpret into meaning to lying askew, constantly listing, eyebrows not raising and lowering with thoughts or understanding, no natural inclination to opening his mouth to spoons of applesauce, and generally not taking in the things going on around him.

He started to make the breathing/choking noise, which in its very early stage was hard to distinguish between “he needs to cough” with what I have of course come to know was the oft-used term “death rattle.” I wanted him to cough. I wanted him to help me help him sit up. I wanted him to focus his one good eye at me as I talked or attended to him ... but these things ceased to be. 

So in desperation and exasperation, I called the hospice team. They sent an ambulance immediately. 

It didn’t feel like “this is our last trip.” I didn’t have any “finality” thoughts ... just ... here we go, into the ambulance. I didn’t think anyone was going to fix him, or that we were going to somehow return to the house in a more stable condition... I didn’t have those thoughts. Just: This is next. This is what we need to do. And so we did. 

The women at the unit were lovely and gracious and sweet. While they situated him in his room, they took me away to do intake paperwork and interview. I remember resenting the time it was taking them to hook him up to things and WHAT WERE THEY DOING IN THERE AND WHY CAN’T I GO IN? and I HAVE ANSWERED THESE QUESTIONS SO MANY TIMES but I sat with a nurse and went over his history, his medications, his current condition. I remember pleading with her - “it’s been so long since he’s had a drink of water. I know that it’s not necessary at this point ... I just feel like if you could maybe give him some fluids?” and she explained to me that it would actually do more harm than good to do so. I knew that. But I also didn’t. 

When I finally entered his room, my dad had beat me to it. He sat, always stoic, in a wooden-armed hospital chair, gazing at the man he’d come to love as a son. I was immediately grateful that the nurses had obviously cleaned him throroughly, changed him from a hospital gown into a respectable man-shirt*.

He was awake. Truthfully a bit more aware than he had been when we left the house. Slightly elevated and surrounded by sheets and an actual blanket. I sat down beside his bed and held his hand. 

“I love you.”

“I love you, too.”

“I hate your school.” **

“I know.”

His eyes closed at some point, and dad and I talked quietly about I have no idea what. The nurse returned to say that there was a suite we could move to so we would all have comfortable places to sit. We changed rooms, and I called his mother. 

“We’ve moved Ian to the hospice unit at the hospital. I don’t know that he has hours or days, and you don’t need to rush here, but that’s where we are.”

She was, at that moment, at the hospital with her father, who had just suffered a massive stroke. I told her to be with her mom and dad and that it was okay ... she declined and said of course that she’d be right there. 

At the suite, there was a couch-bed, a table and chairs, a telephone, a television maybe? lamps, an easy chair ... such a far cry from the hospital rooms and waiting areas that it was like entering someone’s home. I lie down on the couch, scoping out my spot for tonight; I would curl up here and try to rest. 

Carol and her husband arrived. She sat as his bedside and talked to him ... I honestly don’t know if he was talking at that point; it was a separate room with a door. I felt like that time was private to them and grasped at some kind of “settling in” feeling. I looked at at the recliner: my dad has slept in a recliner for years at home, as it provides the most support for him and he has trouble in a regular bed. Carol and Dale had decided to stay the night, and so I looked at my dad, who had spent COUNTLESS nights asleep in an ICU chair (barely more than a folding one), and told him to go ahead home. Dale could sleep in the recliner, and I would camp out here on the couch. Carol had the nurses bring her a mattress for the floor beside Ian’s bed; she, too, was exhausted, and didn’t want to leave Ian’s side. She fell fast asleep.

I think there were phone calls and texts in there - letting everyone know where we were and what was going on. There had to have been, but I don’t really remember them. 

Lying there on the couch, I could hear Carol’s snore, Dale’s snore, and Ian’s non-snore snore. It was a loud, awful drowning noise, but it was rythmic. I drifted to sleep.

At some hour, a nurse came in and said, “he’s had a decline. we thought you would want to know.” 

I went into his room - the lights were very low. They explained something about oxygen levels or breathing or some kind of indicator that things were progressing. I asked that they move him over and I crawled into bed, under the blankets, curled up beside him for the first time in months. His body didn’t shift and accommodate; it was an odd feeling, knowing no matter how much I squirmed around, he wouldn’t do the half-awake adjusting one does when curled up in bed. His breath-noise continued. I put my hand on his chest. I talked to him ... I told him I was there and that it was okay and we were all going to be okay and that I loved him. I sang him our wedding song, over and over. I stroked his cheek. I fell asleep, I guess, off and on, becoming startled at a louder exhale and noise. I put my hand over his mouth, in a dazed effort to calm him — to make him stop making that horrible sound, I’m sure, but also ... it felt like it was such a struggle for him. I wanted him to stop struggling. 

I woke up to quiet. I sat up a bit and looked at his face. I could still see him breathing and felt his heart and warm skin. It was around 5am. I sat up and looked at my phone - lots of messages from lots of people. Love and love. 

I turned and watched him... and soon I just knew. I put my hand to his mouth, I tried to feel his heart, I strained my eyes to look and look and see and sense and feel ... I laid back down and sang again. I stroked his cheek again, and did I imagine it felt cool? DId his lips look a different color? The sun was breaking and the morning color ... I’m not often aware of sunrise light. I texted my parents: “He’s gone.”

I pushed the button for the nurse to come. She softly entered, held his wrist, looked at him, and told me that he had passed away. Just as she was doing so, his mom stirred and stood. 

“He’s passed away.” She burst into tears. “Oh, no.” she said. What else is there to say? It doesn’t matter that it’s not something to be denied. You’re not in denial. It’s just NO. 

————————-

I didn’t often lie with Ian in hospital beds. Sometimes he was in dire straights, and there were too many wires and not enough space. Sometimes he was at home and resting comfortably and I didn’t want to disturb him. Or we had visitors. Or I knew I wouldn’t be able to get sleep I desperately needed. Or something else needed my attention. In the months preceding his death, I had begun to separate myself from my best friend, lover, husband and companion, and had become his nurse. It was an awkward friendship; I’d do absolutely anything for him, and yet I pulled back affection. His love language was touch, but the most he received from me was physical care and medicine administration. Why didn’t I just crawl into his home hospital bed? Because I just couldn’t. 

And that makes me sad. 


I am forever grateful for Ian’s mom, Carol, for taking this picture.


*a wonderful thing that hospice does for patients is to cloth them as normally as possible. They take garments and cut the backs out, using Velcro closure, so the patient can lie in a comfortable nightgown or polo shirt. This is a beautiful thing. 

** an unfortunate part of our shared cultural vocabulary was the entire contents of an ill-conceived Adam Sandler comedy album, committed to our adolescent memories. In one of the less raunchy routines, Sandler imitates a cheerleader frustrated with a pep-rally audience who refuses to participate. In a final sobbing tantrum she yells, “I HATE MY SCHOOL!”. It’s a phrase we used frequently to express discontent at far less serious situations. It became the last phrase I uttered to Ian with his eyes open. I do not regret this, as it is amusing, but it IS a little awkward to explain 😃 

Monday, September 26, 2016

I don't consider myself particularly sentimental.

On Ian's birthday, I didn't have the sads; truth be told, I didn't think of it as any different of a day. Others did, however, and reached out. (Bless you, friends. I appreciated it very much.)

Last month I visited my grandmother. After our chat, we got up to leave, and I told her we'd be back again soon.

"Sounds good," she said. Exactly the same words, in the same cadence, that Ian said often, in response to many people and things in the last months of his life. It was his go-to, reflexive response because in the end, he wasn't capable of translating thoughts into speech. "Sounds good" rolled off the tongue as his default "see you later," or "okay."

My grandmother's innocent statement brought a white-hot flash across my face and into my chest. It was a weird, completely unexpected association. I'd prepped myself: Don't think about nursing facilities and equipment, don't look for decline and neuro deficits. Just visit with Gramma. But those words reached out and grabbed me from the depths of memory and sensory and sucked the air out of my lungs.

For just a second.

I think my sadness is about the illness itself. How it robbed him and us. I HATE the things that represent Diminished/Ailing/Failing Ian. I don't want to remember medical supplies or altered facilities or his swollen face because those things supplant memories of Well Ian. Healthy, happy, smart-ass, giggling Ian. Right now the last months' hardships cloud the previous, joyful memories. And that pisses me off.

As we sat at the dinner table on his birthday, I offered: "I thought that since today is your dad's birthday, we could go around and share a memory we have of him."

Squirming.

Silence.

Audrey recalled he had a bowling ball cake last year.

His own life partner of 20 years was stumped to recall a single happy memory. The nothingness stung.

I think my brain is protecting my heart. If I conjure and dwell on the things I remember, or the things we'll now never get to experience, it will crush me. And so God has given me only small bits of grief on which to chew.

Sounds good.

Thursday, September 8, 2016

Even Less Sugar: A Graceful Goodbye

It’s been almost two months since Ian’s memorial service. I’ve tried several times to post about the beauty of the day and what it meant to me and my family … but I have come up short. Instead, here are some photos of the grave-side military honors, followed by a link to the service itself.

What you WON’T see is the way my kids carried themselves, culminating in each of them getting up at the reception to speak in front of hundreds of people about their dad. MY KIDS ARE AMAZING.









photo credits Greg Pelka