Waiting with Patients

I am waiting. Again. Along with a roomful of other people, fully half of which also show signs of being impatient waiters.

We've been here since 11:20. It's now 12:57. Kevin and his nurse walked back to the surgery suite at 12:41, IV already in place, all set to start.

The fact that I know, to the minute, when he was led away is testimony to my clock watching tendencies.

The waiting will be fine up to an hour. That's my worry point for a sigmoidoscopy. After an hour, things have usually gotten more complicated in some way and my clock watching, leg bouncing impatience will become obvious.

With plenty of time to go in my worry-free hour, though, I can people watch in between being chatted up by several elderly patients who are intrigued by my computer's ability to be "on the 'net with no wires or plugs." It seems to be senior day at the surgical center; Kevin is among the few patients who appear to be under 65 or 70.

Most of the people in the room, though, are waiters, like me. Waiting for a patient to be called back to surgery or waiting for one to come out. They stream up to the reception desk in turns to ask about time...an appointment hour that's passed, how long until the patient is in recovery, released, returning for a check up. While my policy is not to ask about him until it appears he's been lost--and in pushing 2 years worth of this stuff, that's the one thing that hasn't happened--I know the leg bouncing, toe tapping, watch checking rhythm of the anxious and impatient.

Another senior peeks over to see my computer in action. She talks about her amazement at learning something new each day no matter where she finds herself.

Today I'll set aside the worry in favor of the wonder. I'm going to post this and pop up the front page of my blog...the seniors are going to love the pixel by pixel crawl of my inchworm followed by a burst of butterflies.

I may not have patience, but I can pass the time with wonder-filled patients.

Chemotherapy II, a Primer

Chemotherapy Counting. Thought you might like an explanation of some of the terms/numbers we use when talking about Kevin's treatment. The terminology used by the oncologist made a lot more sense to me once I researched the whole idea of treatment "cycles."

Chemotherapy is usually counted in "cycles" which include treatment and a rest period. More about the treatment/rest theory on another day.

In Kevin's treatment, a cycle consists of 2 treatments, each two weeks apart. So he has a treatment period of Monday to Wednesday (his chemotherapy drugs are delivered over 48 hours--an IV drip consisting of 2 chemotherapy drugs at the clinic which takes about 2 hours, a "push" (larger dose injected through the IV over 5 minutes) of another chemotherapy drug, then 46 hours of the same drug infused through the portable pump). Then the infusion pump is disconnected and his body gets 11 days to recover. He has another 48 hours of chemotherapy drugs, 11 days to rest and the cycle is complete.

So a cycle is, roughly, a month for Kevin. More precisely, 28 days, 4 weeks, 2 chemotherapy treatments.

The cycles are recorded like this:
Cycle 1-1 (first treatment)
Cycle 1-15 (second treatment)

Cycle 2-1 (third treatment)
Cycle 2-15 (fourth treatment)

Cycle 3-1 (fifth treatment)...

A common plan for rectal cancer treatment, after surgery, is

2 cycles of chemotherapy (4 treatments)
1 month of no treatment (recovery)
5 to 8 weeks of daily radiation with continuous chemotherapy (through the infusion pump). "Continuous" can mean 5 days a week on the pump or, literally, 7 days a week on the pump, non-stop for the entire 5 - 8 week period--the oncologist decided which way to go.
The radiation period is given a little vaguely on purpose. There is a total amount of treatment that will be given. That total may have to be given in smaller increments depending on how his body reacts.
1 month of no treatment (recovery)
2 cycles of chemotherapy (another 4 treatments)

Something in the neighborhood of an eight month time span (5 to 6 months of active treatment with 2 months of recovery sandwiched inside), not allowing any periods where treatment is delayed because of illness or reactions.

Cancer has expanded our vocabulary. I'm keeping a growing list of word and definition--a cancer glossary--which I'll post another time.

I like lists. A list is almost as good as a plan.

Recovering

It was a quiet but tiring day for Kevin. We asked most people not to visit today. There was no telling ahead of time what kind of adjustments Kevin might face after surgery so quiet and some privacy was the name of the game. Really, who wants to figure out the new plumbing with an audience?

Lisa and Ian brought up cookies for me--yumm--and blew a quick kiss in Kevin's direction. My sister and brother-in-law came this evening, brought me something to eat and stayed while I ran home for a shower. My father and Mary peeked in for moments.

Paige came in this morning with a roll of brown ribbon and safety pins. She pinned tiny brown "cancer bows" on her dad's gown while he was sleeping. He had a good (but painful) laugh when he woke up. Joshua came up for a brief visit and was pleased to find his grandpa sitting in a chair and not looking scary sick.

Dr. Francis is on call this weekend at the hospital so he was in twice. It eased my concerns considerably to have him seen by a doctor who knows him. Dr. Francis reiterated to Kevin that if the lymph nodes are clear he will not need additional treatment. We are stunned--pleasantly so.

I'm awed by Kev's strength. He was really pushed today to walk through the pain and dizziness. The medication for the pain causes dizziness and nausea for him. He walked 4 times today, a little more each time, and I know it was really hard for him. A nurse walked with us the first time and decided I could manage things after that. It takes some doing to make it all happen in sync--get him and his assorted tubes and IVs up and moving, stay right beside him to catch him if he stumbles then reconnect the whole mess once we're back at his bed.

The surgery sites are sore. There are 4 small incisions as well as one large one. And the drain tube and catheter both bother him and slow down his mobility. File this under things they don't detail when you make those marriage vows. "In sickness and in health..." is too damn general. People would think twice about marriage if they had to promise "through carrying around bags draining your urine and blood while we monotonously drag up and down the same hospital hall, time and time again...."

He's not allowed to eat for a few more days and can't drink either. But he can crunch on ice and I can wipe his lips with a damp cloth so we're doing that repeatedly. It's not very satisfying for him, but it's what we can do.

I knew he was feeling a little better late today when we returned from a walk down the hallway and he stopped to adjust the pressure mechanism for the leg wraps to something more to his liking before getting back into bed. He particularly hates the restriction of them. Ever the engineer, he just had to fiddle with the buttons and dials.
We've had a lot of voice messages and emails. I think I've answered all--we appreciate the prayers, the offers to help with things, the concern and good wishes! Kevin would like someone to smuggle something edible into him....don't do it! Or at least make it a Meat Lover's Pizza so when I take it away from him, it'll be something I can enjoy. Get the think crust, will ya?

Surgery Day

I'm sitting in the lounge area right across from Kevin's door. He is sleeping off and on thanks to the help of some good drugs. I am spending the night at the hospital and have already seen the advantage to Kevin of having someone here just for him. When he wakes a little, he is confused at first and usually needs something adjusted so I'm glad I can be with him.

Surgery was long today. 5 1/2 hours of anxious waiting on my part. Paige, Kate, my sister and my brother-in-law waited with me. They left for a while and returned with Arni's salads and pizza. Being nearby, I am guessing there have been hundreds--probably thousands--of Arni's pizzas and salads consumed in this hospital.

I continue to be struck by the same/different aspect of life--this--cancer, surgery--is all so new, different, unique in our life. Yet, there is such a commonness to it too--so many pizzas eaten by so many people waiting for news in the same rooms in the same hospital.

Back to now the information you want...Kevin did great. He was positive and calm before surgery this morning. It was hard to walk away from him though when the time came for him to be taken back.

I have this image in my mind that as long as I can watch over him, as long as I stay awake and pay attention, nothing bad can happen to him. So waiting in a room that felt miles from him wasn't going to be my strong moment.

About 3 1/2 hours into the afternoon--nearly the time we expected things to be done--I got a call from the anesthesiologist telling me that Dr. Francis couldn't complete it laproscopically so they were proceeding with the full abdominal resection. That was hard to hear. Two hours later, though, Dr. Francis came in and said it had gone well, just a little tight working laproscopically.

No colostomy. YIPPEE! We had convinced ourselves that we could manage that just fine if that's what it had to be, but it's a relief that it was avoided.

Dr. Francis expects Kev to recover well and says if the pathology shows no lymph node involvement things are done. No chemotherapy needed.

THAT is amazing and wonderful news.

Kevin looks great. Really, really amazingly great.

He is in some pain off and on and, thankfully, not very awake for very long at a time. Tomorrow they want to have him up and walking so it may be a long day for him. He won't be able to eat for several days. That should be interesting.

Kate had to leave earlier and we convinced Paige to go on out to the farm to meet Rob and Josh. They are all spending the night at the farm. The others left once Kevin was settled into his room.
I am very appreciative of the people who stayed with me today--there were many others who offered to as well. We are so touched by those offers. Yet it feels good to be alone now. Or as alone as you get on the surgical floor of a hospital. No need to make small talk and time to think about how we got here and where we're going.

I can chat up God quietly now, make a couple of suggestions to Him about what He might want to do about a few things here (think of it as intercessory prayer, if you will), and generally say thanks.

Putting Cancer on Notice

Kevin was anointed this morning at St. Tom's. He waivered about it for a couple of days before asking me to arrange it. Father Dan and Father Jim both wanted to participate.

It was pretty amazing. Father Dan read the prayers, Father Jim stood behind Kevin while everyone gathered around and, as much as possible, placed a hand upon Kevin.

Our three girls were there as well as my sister and brother-in-law, my father and Mary. Zelda. Beth and Eileen and other friends from St. Tom's. We had emailed some of them and told others as we saw them.

From there the number of people just grew on it's own. Sort of a counter movement to the cancer and the way it just grew on it's own.

Other people we know--some we know by face but not name--realized what we were doing after Mass and joined the group. One of the new priests, Father John, had been chatting us all up before Fathers Dan and Jim came in and he stayed once he realized what we were doing there.

It was amazing. There were around 30 people, most of whom joined in on the spur of the moment to support Kevin in prayer as he was anointed.

I like the idea that right up front Kevin's cancer is being given notice. Our ability to grow healing through prayer and the support of family and friends is stronger and quicker than cancer's ability to continue growing in his body.

Part 2, The Surgeon

We like his surgeon a lot. Dr. John Francis. More important, I can see how confident Kevin feels about him.

He stacked up well in the research I did beforehand--does medical missionary work, has an impressive experience record and is specially trained in laproscopic technique. He thinks he may be able to do Kevin's surgery laproscopically which would mean 4 to 5 small incisions instead of a full abdominal opening. We both feel good about his skills and decision making abilities.

Which is a major plus because Kevin's surgery is going to be one of those "decide as he goes" deals for the surgeon. Depending upon what the surgeon encounters, it could be laproscopic, a full abdominal resection or possibly go into an abdominoperineal resection. We won't know until it's over if he will have to have a colostomy. We really won't know much at all until after the fact. I felt like he heavily prepared us for the higher end of the scale but the window is open for it to be less. And I could see Kevin relax with this new hope of a less devastating surgery.

Surgery will be scheduled in the next few days and probably occur within the next couple of weeks. He may be hospitalized as long as 10-14 days, depends upon which surgery is done and how he responds.

It was a comfortable meeting especially considering the topic . He did a thorough exam (already I know we will never again hear the word "peek"--as in "doctor will want to take a peek up there"--without relating it to cancer) and I was allowed to stay which helped Kevin be more calm and let us get a lot of questions answered right there in the moment.

I'm not in the least bit squeamish and probably do better, in fact, when I can be with Kevin rather than shunted off somewhere to worry about him. Kevin doesn't hear well and he relaxes more if I am there to listen and repeat information he would miss otherwise.

The 'stand back and watch from the outside' part of me did think it was probably a pretty strange scene. The three of us in there chatting about missionary work in Africa while the surgeon was busily taking the aforementioned "peek up there."

The good news from the exam is that the tumor is higher than the surgeon expected it to be based on what he had read in the colonoscopy report. "You don't want to be able to reach up and touch these things" is how he put it.

I'm going to take his word on that not being able to touch it thing.

From a surgical standpoint, the higher the better in terms of allowing surgical access and enough room to work and put things back together. This increases the chances of both completing the surgery laproscopically and avoiding a colostomy.

We were ready to hear some good news today and doing so makes it easier to move forward.

**Surgical technical note which may be more information that some want so feel free to slide on past this portion. Having the tumor be located higher improves things in a number of ways, including:
First, it becomes easier for the surgeon to get to the area if it's more away from the pelvic bones. Higher increases the chances of laproscopic surgery succeeding and improves Kevin's entire recovery period.
Second, the tumor will be removed as well as an area above and below it along the bowel. This will limit the liklihood of there being other, scattered cancer cells left to grow. They refer to this as having "clear margins." You don't want pathology to find any cancer cells in the surgical margins. If the tumor is too low in the rectal area, there may not be enough room to gain a clear margin or, in order to do so, there may not be enough bowel left on the low side to reattach to. This would mean a permanent colostomy. In a worse case scenario, it could mean a more intensive surgery with dramatic and permanent body changes.**

What Happens In the Bathroom,

stays in the Bathroom.

It's one of our secrets to a happy marriage. Sixteen years of marriage hadn't brought any reason to violate this basic tenet of cohabitation.

Cancer breaks all the rules.

Any sense of embarrassment about the sharing of body function information has dissipated. We've written it all repeatedly until our hands are cramping.

Six days into this and we are getting daily deliveries of big thick envelopes. Every medical office that might possibly come in contact with Kevin's bum needs a review of his medical history, a detailed account of his digestive processes and a personal statement of occupation from his cancer.

Scheduling appointments, getting treatment/diagnosis options and staying on top of insurance eats a huge amount of energy. The inefficiency in the name of privacy is maddening for both patient and provider.

To this computer savvy family, the repeated handwritten rehash of the same information seems like an enormous waste of available technology. Once on the computer should be enough then ctrl + C for further use.

Working together over the phone, we filled out yet another form tonight. In "descriptive language" as requested.

Me: "You know I could have gone my whole life without knowing that bit of information."

Kevin: "And I would just as soon not have you know. So feel free to forget it."

Yeah, right.

182 Minutes

Kevin had a "routine colonoscopy" today--sort of a 'happy birthday, you're over 50' gift from his doctor.

We arrived at the GI suite of the hospital before 6 AM for his 7 AM exam. Just us and the nurses for the first 45 minutes or so. The only guy in the place this morning, Kevin good naturedly accepted a lot of teasing from the nurses and me. The nurses commented that as a reward for Kevin's tolerance of the teasing, they were going to get him "out of here by 8:30. You can be eating breakfast by 8:45."

I glanced at the clock when they took him back. 7:03. "We'll bring him back by 7:30, just wait here in his room."

As good as their word, a dozing Kevin was returned right at 7:30. No one made eye contact with me. No more teasing remarks about what they found. Just "he'll be out awhile; we gave him some extra sedation."

By 7:45 I knew Kevin had cancer.

The gastroenterologist showed up to talk with me. Kevin was still in the land of nod. Dr. M. had a handful of papers and started with "he has an ulcerated area. A lesion."

OK. I'm good with a lesion. This sounds like something that can be fixed with a change of diet and some medicated cream.

Then, "He has a large ulcerated lesion." "A bleeding growth."

I remember reaching to the chair next to me to move my computer and motioning for the doctor to sit down. This is going to be a sit down conversation.

"It's cancer. He needs surgery."

I looked at the clock. 7:45

The TV/movie people have this all wrong. In the movies people are called into quiet offices and sit in nice chairs facing their doctor across a big desk. Couples get to hold hands for support. They get some private time to adjust to the news before The Planning begins.

In real life you sit in a cold metal chair in a curtained cubicle of a busy exam area and get about a 2 second interval to be stunned and then it's time to focus on what you're being told. This is important stuff; you know you can't afford to miss anything. And you're alone because the other half of your couple-dom is still in an anesthetic induced dreamworld, getting the last few moments of peaceful sleep he's going to have for a while.

"... very large growth, very low....certain it's cancer....want some tests done now...call a surgeon and an oncologist today."...You want me to wait for the biopsy though, right?... "No, don't wait for the biopsy...do it today. "

"Do you have a surgeon? An oncologist?"....No. NO.

I know our life has already changed. If I'm ever asked those two questions again my answer will be "Yes."  It just seems bizarre.

In  sort of parallel part of my mind, I was impressed by the doctor. He so clearly felt bad about the information he had to give me.  But he was concise and honest and he listened. I mentioned Kevin's work in Ohio and he instantly rearranged orders with the nurses so Kevin didn't have to make an extra drive over to Indiana for more tests.

Kevin was starting to become aware of things--a lab tech drawing blood from an arm, a nurse getting additional information from me and arranging for a CT scan.

8:52 AM

He was so groggy still that it was well into waiting the 90 minutes in the CT area before he started to grasp what was going on.

I think those minutes will be forever etched in my mind. A room full of people, no privacy, Kevin feeling sick from the sedative for the exam and the contrast drink for the CT, not really clear minded yet, trying to understand what was happening. Me trying to help him grasp the idea of cancer.

I had this disconnected feeling. Outside I was calm, taking down information, regurgitating answers, keeping an eye on Kevin. Inside a million thoughts, smells and sounds were bombarding my mind. And somewhere over to the side I was watching all of it...Dr. M's demeanor as he told me, the nurses as they offered encouragement, other people in the CT area, my reactions and Kevin's slow comprehension.

It struck me as odd that these people we had never met before were suddenly cast in the role of delivering news that so changed our day. Our lives. I can't spell the gastroenterologist's name but I doubt that I ever forget it.

10:47 AM

One of the nurses from the GI area slid into a seat beside me in radiology. "I just wanted you to know all of these tests today are routine for diagnosis. Doing them doesn't mean things are worse than you think. They're routine."

Routine colonoscopy. Routine bloodwork. Routine medication. Routine CT scan. Routine calls to surgeons and oncologists.

I'm not sure yet where we've landed that all of this is routine.  We're clearly not in Kansas anymore, Toto.

The first 182 minutes of a newly defined "routine."