If you want to know what liver failure “looks” like, read on, because that’s what I’m going to share today. If you don’t want to know and you read this anyway, don’t say I didn’t warn you!

Liver failure looks like hope and then heartache, hope and then despair, hope and then sorrow. One day, his ammonia level is down and he’s clear-headed, though very weak. We leave late in the evening, after he’s settled for the night, enthusiastic about the day — he’s going to rally! — and looking forward to the morning.

And then morning comes and he’s groggy and confused, less able to stay alert or hold a conversation. Our euphoria from the prior day dwindles; perhaps today is the beginning of the downward spiral, the end of clarity.  It’s like a seesaw from childhood. One moment, you are dangling in the air, legs swinging, laughing. The next moment, your teeter totter “friend” has jumped off their seat and you’ve come crashing down.

Physically, as his liver failed, his skin has taken on a yellow tinge and the whites of his eyes have become yellow. If you’ve never seen this color change before, at first, it’s hard to recognize. On my olive-skinned husband, it looked initially as though he’d gotten a little sun. In comparison to my very pink Irish skin, his yellow tinge is very apparent.

If you think bodily functions are gross, you won’t appreciate this next part:  his urine is the color of teak wood. It just so happens, due to other cancer complications, that he has a catheter so it’s easy to pay attention to changes in urine color, in the collection bag hanging from the side of the bed.

To keep the ammonia level — and the confusion — down, they give him an orange-colored, corn-syrup-thick liquid called lactulose. Ken says it tastes awful. It also causes horrible diarrhea.

Another symptom of liver failure is his exhaustion and weakness. He literally doesn’t have the strength to get out of bed by himself. Yesterday, we went for a walk around the floor with the mobility aide but we only got a few steps before he needed a walker. Once he had that, though, they had to ask him to slow down!

When he’s alert, his mood is pretty good. He’s more peaceful, most of the time, than he has been through this whole horrible illness. That’s not always the case, though, and as his ammonia level increases, so does his irritability.

The GI doctor did a procedure on Friday to open his bile duct up. They put a camera down his throat, through his stomach, into his intestine, to his bile duct. (Do I sound knowledgeable? I’m actually a really good sponge (or parrot) but I don’t really know what it all means, beyond high school biology.)

Anyway, they were looking for blockages in his bile ducts as well as any stuff that might be clogging things up. The expected 30-minute procedure was more than two hours long. There were blockages everywhere. The doctor could only put in two stents, in the largest bile duct and its right branch. Monday we’ll know if they are going to propose doing more. The bilirubin level continues to rise and he’s terribly confused today so I am not sure their efforts could be defined as successful.

Thank you again for all your thoughts and well-wishes. I have been sharing them with Ken and he’s very appreciative.  Maybe tomorrow I’ll talk about how Ken is dispensing the stuff that is meaningful to him. It’s painful but perhaps it is reassuring to pass on things of personal significance while he can still explain their importance. Take care ….

I wrote a long blog over the weekend, sitting in the hospital room by Ken. Its content isn’t really relevant though, any longer. Over the course of last week, while doctors got his pain under control, Ken’s liver function continued to deteriorate. His liver MRI showed significant cancer throughout, much worse than what we saw in the PET/CT last month.

Increasing ammonia in his blood made him delirious and groggy over the weekend but his care team has succeeded in reducing the ammonia level. We’ve been celebrating some beautiful moments of clarity with him the past two days. Today he even sat up in a chair for about three hours, talking with his daughter and his sister. Later, resting in his bed, he and his younger boy tried to guess the Jeopardy questions on TV.  Todd, they agreed, really deserved his $25,000 winnings.

Today was lovely. It was also temporary. Ken’s liver has failed. We met with the oncologist and the palliative care team this morning to begin the process of moving him to hospice.

He doesn’t want a funeral or to be displayed in a casket. Instead, he asked us to have a get together like we did for his mom.  I’ll update you as I can.

I had another dream and, as I told a friend, although I didn’t completely wake up, I can remember that my dream self caused some sort of accident as I was walking along a sidewalk with a tall-ish dark haired man who was NOT Ken. Although it wasn’t clear in my dream, when I woke up, I felt very strongly that I had permanently maimed Tom Hanks, perhaps even paralyzed him.

Is Betty White next?! How about Sandra Bullock or William H Macy?! If I have to dream of doing terrible things to people, couldn’t I at least dream of maiming or killing someone really horrible?!

ANYWAY … You’ll never guess where we are right now! I’ll give you a clue…ping, ping, ping, ping …[silence]… ping, ping, ping, ping. Did you guess? I’ll bet some of you recognize the echo of heart monitors sounding off across the hospital wing! Yep, we’re back in the hospital again, since Monday. I’m hoping that we’ll be back home by Friday. He’s okay, not feeling great and not sleeping well, but I think that’s at least partially due to … well, being in a hospital.

Our current hospital trip started with a bout of unmanageable pain and sky-rocketing liver function lab results. Since he was admitted, though, the palliative team has changed the pain management strategy. He’s currently on a self-managed medication infusion which is helping some. In addition, he got another spinal MRI and ruled out any metastasis in his spine.  Today he had an ultrasound and an MRI of his liver. We don’t have the results yet but since it’s super late, I think we won’t know more until tomorrow.

I’m heading home shortly. Keep Ken in your thoughts and keep your fingers crossed that I don’t dream-kill anyone else! Much love ….

One minute we’re having a lively conversation as we walk up the stairs, and the next, Julie is plummeting to the ground several floors below us. My grab for her arm is useless. I look down. Her legs are oddly bent and she’s not moving. I jolt awake as my dream self begins running down flights of stairs. I’m devastated but Julie Andrews isn’t dead, of course. It’s the middle of the night and I’m trying to process what the PET/CT results really mean.

We got Ken’s scan results last Monday. Things started oddly. I’d been worried all weekend because my team was supposed to present to our company president Monday morning, at the same time that Ken and I were supposed to meet with his oncologist. The Fates intervened for some reason and canceled the team meeting early that morning. Ken comes first but that doesn’t make the juggling act any less stressful.

Anyway, usually, Ken gets infusions for six or more hours so we plan for a full day at the cancer center but on Monday, the nurse said we might be out by noon, depending on his magnesium level. I looked at her and said “Unless he gets chemo, right?” “Oh, yeah, right, unless he gets chemo.” He needed two hours of magnesium and she got him all set up for that. Then we got this weird phone call from the home infusion company, trying to pick up Ken’s chemo pump. I told them that he was literally at the cancer center getting prepped for chemo and that they were confused! Turns out that I was ….

Shortly after the nurse started his mag, we were called back to the patient rooms and sat quietly for a bit, listening to the IV pump sending magnesium into Ken’s veins. His oncologist came bustling in and told Ken to get up on the table. That was also very unusual, as we normally talk BEFORE the examination. Ken is super skinny, which is apparent when the doctor pulls up Ken’s shirt to listen to his lungs. His lungs are clear and they talk for a minute about the skin lesions. The doctor tells Ken that he can climb off the table and sit in one of the plastic chairs but the doctor remains standing. He’s upset.

“The tumor below the waist looks pretty good,” he says. The wording is wrong. My heart starts to thump in my chest. “But,” he looks at Ken, then me. “The rest of the scan is not good.” My eyes fill but I force myself not to cry. I have to stay calm and get the details. I watch as Ken’s face crumbles and I start rubbing his knee. Ken doesn’t ask many questions but I do. We talk with the doctor for nearly an hour and I remember thinking how lucky we are that he can stay with us, that he has time to continue answering question after question, time to help Ken calm down.

In a nutshell, the cancer has spread into his liver and throughout his lymph system. There are spots on other organs “suspicious for neoplasm” which is medical-speak for “there’s cancer here and here and here.” In a Harry Potter-esque moment, we talked about how peacefully Ken will die. He’ll “sleep to death” at the end. It won’t hurt; there will be no blockage in his intestines. Is that reassuring? I think about how I’ll tell our children. I’m starting to feel sick and I realize that I’m still rubbing Ken’s knee. He doesn’t even notice; he’s trying not to cry, trying so hard to be brave. He gives a little speech, thanking the doctor for all that he’s done. I tell him to stop giving his eulogy because the oncologist wants to keep looking for options, doesn’t want Ken to give up. The doctor chuckles and tries to give us encouragement but I can see how upset he is too.

For now, Ken is going to take a chemo pill that won’t stop the cancer but will slow the growth while they look for new treatments. We discussed surgery. Sometimes they successfully remove cancer from the liver but it’s not an option for Ken right now. He’s lost too much weight, making the surgery difficult for him to endure. On top of that, the cancer is growing during chemo; imagine what would happen if Ken had to stop chemo for two months for surgery and recovery.

The kids all know that treatment isn’t going well. The older two have a few more details but what I didn’t tell them, they can see for themselves. Over the weekend, Ian and I talked about what we’re afraid of: I suspect that you know what I am afraid of.  Ian, my little Ian, is afraid that his daddy has stopped fighting.

There’s not much more to say except that I’m sorry, sorry that this is another sad blog entry, so sorry for all that Ken is going through, and sorry too for all that we — his family and friends — are enduring from the sidelines.

Send us your positive thoughts, your hope and your strength, help us to give Ken the strength to continue fighting. And if that isn’t our future, help us to find peace and courage to accept. Much love to you all….

 

Yep, it was a year ago that I said to Ken, sitting in the waiting room, “If it’s cancer, the doctor is going to tell me to come back with you.” And then the doctor himself came into the waiting room to call Ken back and say to me, “Why don’t you come, too?”

That’s all it took to start us on a journey of self-discovery that none of us wanted to take. It really is, you know … a journey. We are learning how we respond to stress, sorrow, grief, fear, pain/seeing someone else in pain. Believe me; this is no Hollywood movie with the dialogue scripted and the lines perfect (quotable!). But I remain very thankful for all the really wonderful people I encounter all the time.

Some of them enter our lives briefly while others gift us with their ongoing presence. There’s the oncology social worker who pulled me aside on Monday to say that I look like I’m crumbling — “are you sleeping at all?” — and to ask how she can help me. “Do you ever cry?” She asks. I’ve known her for a year now; so I rolled my eyes at her (she laughed) and said, “Only when I have to.” When I was a little girl, my momma used to say “You get a limited supply of tears in your life so don’t waste them.” I think about that a lot because it feels like I’m on a journey with more stops for tears down the road.

Ken’s having a very hard time kicking the pneumonia. He’s been off work since Christmas and the doctor just extended his disability for at least another month. His color is poor; his weight is still dropping. And he’s terribly cold pretty much all of the time. For awhile, we were having a thermostat battle. He would bump up the temperature in the house to a balmy 80ish and one of us would check it later when we were stifling in the heat. Since having the whole house super warm wasn’t helping him to stay warm, I got him a really comfy heated blanket (Costco!) AND a space heater on wheels (Meh.com!) so we can move it around with him.

We’ve been struggling a bit with medication management. He has a drugstore full of pills in the bathroom — stuff for pain, diarrhea, constipation, nausea, sleeplessness, vitamin deficiencies — you name it, he’s been prescribed it. With these last hospitalizations, they reminded us to pick up our scripts on the way home but no one even explained what the scripts are for. Back to my friend google for assistance.  Really, if we could just get the pain management part under control, it would improve things for him tremendously. We’re on day 3 of a new strategy for pain management and while things were not good last night, I am hopeful that by day 5, his pain will be more easily managed than it is right now.

Fingers crossed for positive or even neutral news from his long-delayed PET/CT.  It’s finally approved and scheduled for this Wednesday, results expected at his next chemo appointment.

Apologies that this entry is so “off the cuff.”  I realized after I started chronicling events on Thursday that there was no way I could actually publish the cliffhanger that this health event has been but it seemed important to continue documenting our experience as it has happened, as best I could anyway.

January 5, 2017

Have you ever seen Jurassic Park? I’m thinking particularly of the scene where Timmy says “Well, we’re back in the car again.” And Dr. Grant says, “Well, at least you’re out of the tree.”

Why, you ask, would I be thinking of Jurassic Park right now? Because we’re back in the hospital, the 3rd time in a month. I’m actually typing this as I sit beside Ken’s bed in Room 13 of the Emergency Department. His temperature is above 103; he’s slipping in and out of awareness.

I’m distracting myself by talking to you all as we await the results of the blood work but there’s no way I can post this until we have some results. No sense in scaring anyone who reads it!  I’ll just add to it as I get more information.

Since it may seem insensitive to some that I’m writing the blog while Ken’s lying in a hospital bed, let me start by saying that, after many hospitalizations in the last year, I’ve basically created a “go bag” for myself (Criminal Minds, for those of you who don’t recognize the quote). The only things I have to add are my computer and charge cords (since I use those every day and don’t have multiple sets), my wallet and anything Ken wants. My bag contains kleenex, lip balm, pens and pencils, activity books, snacks, ear buds, Tylenol, and a water bottle. Yes, I know that sounds as super nerdy as it is but I know myself — when I’m anxious, my thoughts are too scattered to be reliable. Having stuff to do helps me manage my own stress level.

Our current health event started a day or so ago. He hasn’t been hungry but otherwise okay. Yesterday he said he thought he was getting sick. Today, he had chills that couldn’t be warmed away by heated blankets and swaddling. I talked to the nurse at the cancer center. She said, “Watch for a temperature.” By 5:30, it was 101.5, so I called the answering service. While I waited for a callback from the doctor, Ken said, “Take my temperature again.” It was up to 102.5. The phone rang. As I expected, we needed to go immediately to the hospital.

The hospital has emergency valet parking (which is awesome by the way); I’ve warned Ken that he’s using a wheelchair (he hates them but he’s too weak to walk safely today). The valet runs to get one for us and I wheel Ken into the packed waiting room. Here’s where patient advocacy comes in: when I sign him in, under “reason for your visit,” instead of writing “very high fever,” I write “cancer patient with very high fever.” We find a spot for his wheelchair in the waiting room but it’s cold so I go back to the desk for a blanket. The woman there says, “We’re taking him back immediately.”

The cold air has dropped his temp to below normal but the triage nurse can see that he’s seriously ill. She tells the tech to wheel him back to room 13. The tech is chatty so we talk about how busy it is. When she asks if we need anything, Ken says, “Blankets.” He’s shivering again. She brings 4 heated blankets to us and I pile them on him.

A nurse comes in to see us. She takes several vials of blood from his port and tells us that she also will take blood from his arm too, shortly. “I’ll be back,” she says. A few minutes later she comes back to take his vitals. His temperature is back up to 102.5. She sets up a saline drip to cool him off and takes away two of his blankets. “I know you feel cold but your body is burning up,” she says.

An X-ray technician takes Ken away for chest X-rays. Somehow, in the 5 minutes he was gone, Ken persuaded the X-ray tech to give him more blankets. He’s swaddled up to his eyebrows again.

Across the hall is a man who broke his ankle. He’s being amazingly stoic, considering how bad the break is (I got that information directly from the X-ray tech, undoubtedly a breach of HIPAA). I closed Ken’s door because the tech warned me that they’re going to set that man’s ankle right there, across the hall from us. Pre-door closing, his occasional groans made me so anxious I feel like my stomach is in my throat. Now, I can’t hear anything from his room but my stomach still isn’t back where it belongs.

Two hours have passed. I did a crossword puzzle, played Tiny Wings on my phone until I was ready to chuck the phone out the window (into the snow), opened the door cautiously to assess our “neighbor” (he’s sound asleep and his ankle is set and wrapped). Ken, however, is worse. I just held him down as he tried, shakily, to get out of the bed to go … somewhere? He’s groaning that he’s thirsty but the nurse (who is pregnant and a little bit grumpy) won’t give him fluids right now so I’m trying (unsuccessfully) to distract him.

It’s after 10PM now. I’ve texted the kids to say “good night.” The emergency room doctor said that Ken can have a little water. He downs it in one gulp as the nurse says, “Sip it. Sip it. Don’t drink it all.” Then, “I’m glad I didn’t give you the big cup.” I laugh but she’s not amused. Ken’s back is hurting him. The nurse gets him some Tylenol (and another drink). His skin is hot to the touch and the nurse removes blankets again.

The doctor comes in around 11PM. Thankfully, the Tylenol has brought Ken’s temperature down a little so he’s not so out of it.  He hears the doctor say that Ken has pneumonia in his right lung. The doctor is very concerned, mentions sepsis and asks if Ken’s been hospitalized recently. (“Yes, at this hospital two weeks ago.” “Oh,” says the doctor.) He has ordered two IV antibiotics: one that will be delivered every 12 hours, one every 8 hours.

January 6, 2017

It’s 7AM and I’m back in Ken’s room. First, let me catch you up on the final activity of last night:  Transport was ordered and Ken moved into his room at 12:30. When we got there, the nurse admired his gel socks (for his terribly cracked chemo-dry feet) and switched them for hospital safety socks (you know the kind, with the anti-slip bottoms).  She  realized that today is his birthday, sang an abbreviated Happy Birthday, and drew balloons on the white board. After Ken thanked her, he told me to go home; I waited another hour to see that he was settled in and able to rest.

I’m back here early because 1) it’s Ken’s birthday, 2) I was too anxious to sleep anyway, and 3) I want to be here when the doctors round!

The hospital is my office today so I set myself up on a folding chair, using another folding chair as my desk. Time to start working!

The phone rings. It’s Ken’s work family and they’re singing Happy Birthday to him. I love it and so does he. Texts and calls continue for a bit of the morning, though he’s not really feeling well enough to talk to people or even hold the phone to his ear.

For the most part, time passes slowly in the hospital. Ken’s still getting IV antibiotics and he mostly dozes in his bed. Occasionally, I get up to fix his blankets, plug in or unplug “Shorty” (the IV device — I have pictures if you don’t believe me!), and the like. It’s strange; there’s a lot of activity. Dietary comes in to plan his meals, the nurse pops in to check his IV or add new meds, a patient care associate takes his temp and checks his pressure, someone brings his food, someone takes his food tray, housekeeping empties the garbage and cleans the floor….it’s busy and yet it’s so removed from “normal” life.

When his lunch tray arrived, I hustled to the cafeteria to grab something. On the way, I stopped at the gift shop to see if they had reading glasses. He usually has a pair in his pocket but somehow was without them, rendering his Kindle useless! Sure enough, they had very inexpensive glasses so I bought a couple pairs and took them upstairs with my grilled cheese sammie.

The CRNP from the cancer center stops by and tells Ken that he’ll be here through Monday. We both sigh at that. It seems very far away but she reminds him that he’s seriously ill. After she leaves, he dozes off and I re-focus on work.

My work day was busier than it usually is on a Friday, maybe because I’m caregiving and working? Anyway, I’m immersed in proofreading and surprised when someone enters. There are 6 nurses and a dietitian. They’ve brought a little cake and are singing Happy Birthday. I am embarrassed that it made me cry and I sing loudly along with them, clapping as their song ends.

They laughed with us for a moment and then ran back to their jobs. It’s quiet again and now I’m going back to work.

Another couple of hours have passed and the oncologist is here to check on Ken. He thinks Ken may be able to leave on Sunday, depending on the results of the blood cultures that were started on Thursday. An infectious disease specialist is going to consult on the antibiotics and outline a path to discharge. The doctor tells us that we caught the pneumonia early and that we’re lucky.

“… You gotta ask yourself one question, ‘Do I feel lucky?’ Well, do ya?”  (I probably don’t need to identify a Dirty Harry quote for you but seriously, if you’ve never seen a Dirty Harry movie, you should get login to Amazon and binge watch!).  Honestly, I think Ken doesn’t feel very lucky.

Ken’s nurse tells us that the infectious disease specialist is “a man of few words.” And then she makes a little face.  A bit later, he walks into the room, tells Ken “we’re going to fix you right up” and turns to leave. Ken and I look at each other. Seriously?! The nurse was so right. Ken says, “What does that mean?” The doctor turns around and says that the infused antibiotics will run throughout Ken’s stay. His phone pings and he starts looking at it. Ken says, “Do you need to take that?” And on it goes. This guy is the definition of terrible bedside manner, worst experience we’ve had in the year this has been going on.

It’s after 7 and Ken wants me to go home to feed the kids. I know they’re fine but I’m exhausted, so I’m giving in.

January 7, 2017

It’s a little later than yesterday. Ken texted me early this morning, asking me to take the kids to breakfast at Rocky’s, his favorite breakfast place. It’s a tiny, breakfast-only restaurant (diner really) in the Bloomfield section of Pittsburgh and it has a true Yinzer vibe (if you don’t know what that means, I can only suggest that you google it!). After breakfast, the kids drop me off here at the hospital.

The Aide was just in. His temperature is still normal. It’s mid-morning and very quiet.

Ken didn’t like his lunch much – baked cod, mashed potatoes and corn, plus some fresh fruit. He picked at the cod but ate the fruit.

It’s about 3:30 and the nurse has just told us that Ken is being moved to an oncology floor. I need to pack his stuff.

We hadn’t even reached his room on 6 when I bumped into an old friend! She came into Ken’s room before she left the floor and we chatted for a bit. Her daddy is here. We both said “I’m happy to see you but sad to see you here.”

Ken’s not hungry. He’s talking about refusing his dinner. I suggest that we “take a look at it first” to see if it appeals to him. He agrees to wait.

His dinner is here, a chicken caesar salad. He’s nibbling at the lettuce but making disparaging remarks about the chicken, which he refuses to eat.

It’s after 6:30 and he’s getting agitated. I asked if he’s feeling okay and he says that he is. At 7, there’s a shift change and the new Aide comes in to check his vitals. His temperature is 99.7. She’s not concerned but I am.

The evening nurse was just here. I told her that his temperature is concerning. She’s busy and not terribly interested. I insisted that it was bad. She agrees to send the Aide back in to check it again. I have watched the clock since, waiting for the Aide to return. And here she is, an hour later. His temperature is now 101.1.

The Aide hustles out to let the nurse know. The nurse comes in and says, “I’ll get you some Tylenol.” So, seeing as I’m pushy, I say, “Aren’t we concerned about him having a temp?” Fortunately, we’re both friendly and collaborative. After some discussion, she agreed to call the doctor and has just stepped out to have someone page him.

The nurse just came back with Tylenol. She said the doctor is concerned and we’ll see him in the morning. It’s 10PM. I’m heading home to do some laundry and go to bed.

January 8, 2017

Not much has happened so far today. The oncologist came in and said he’s concerned about the fever. The infectious disease specialist is looking for the cause. Apparently he has a theoretical flow chart of symptoms and treatment and he’s tracking Ken’s treatment down the chart.

Ken’s irritable. His temperature is normal right now but he’s cold and not feeling great. For awhile I was offering him activities and he was rejecting them. “Walk around the floor?” “No.” “Crossword puzzle?” “No.” “Want to use my chromebook?” “Not right now.” But slowly I figured something out.

“Ken, I’m stuck. What’s an 8-letter word for ‘ransomed,’ starting with R?” He might not do a crossword puzzle but he’ll help me with one! And so we’ve passed a couple hours. The Steelers-Dolphins game came on at 1. We’re not really football fans. He’s watching without the sound; that way we don’t have to hear the commentary or the commercials!

The nurse just stopped by. Ken can’t be released without the infectious disease specialist’s visit. I’m definitely thinking Ken is going to be stuck here another night. Part of me wants to see him not have a fever through the night.  Another part of me wants us to be home.  It’s Ken’s journey so I keep my mouth shut while he talks to the nurse. He wants to go home. She’s going to page the doctor.

Three hours have passed and the specialist is a no-show. We’ve been sitting here with the crossword puzzles all afternoon. Ken’s started having some chills and we are using a handheld thermometer to monitor his temperature. The most recent result was above 100 and I called for the Aide. She brought the official thermometer in and confirmed that it’s back up again. The nurse calls it a “low-grade fever.” Ken is not going home today.

January 9, 2017

This morning, the CRNP came in to see Ken. His  bloodwork today showed that his magnesium level is low again. She ordered a 4-hour drip but that’s okay because the infectious disease specialist didn’t show up until 2:15 today. After reviewing Ken’s medical chart, he wrote a script for an oral antibiotic that Ken will take for the next week and said we could go home. And that’s where we are now.  I am very grateful!

 

People often talk about how difficult Christmas can be and this year, for the first time, I fully understand what they mean. We are not “in the spirit” even though we’ve shopped and baked cookies and watched some Christmas movies (if you’ve never watched a little gem called “Arthur Christmas” I highly recommend that you give it a go).

With a little over two weeks left in the year, I’ve been thinking about the themes of redemption, forgiveness, hope, charity, and joy, among others and how I have seen them throughout this year of cancer treatment.

There’s a very religious lady who will talk with anyone and everyone about her relationship with Jesus but not in a proselytizing sort of way. She’s just talking about something that’s super important to her and maybe, a little bit, the conversation helps her deal with her treatment.

There’s a tiny, older lady who hugs the caregivers and thanks them for being there (she makes me cry).

There’s a grumpy daughter who comes in with her mom and complains about how long everything takes and how inconvenient it all is (she is the only caregiver who actually upsets me but I remind myself that her mama is ill and her resilience is low).

There’s a woman whose sister sits with her every treatment. They are elderly and the cancer patient sister curls up under a beautiful patchwork quilt. The healthy sister does crossword puzzles and chats in a desultory way with her patient-sister during treatment. They sit close together, mirroring each other, offering hints of the childhood friends they used to be.

There’s a small Asian man who sits next to his wife or girlfriend, holding her hand and occasionally kissing it. She has lost all her hair and wears a rakish little hat low on her forehead. Her father often comes with them and stands throughout her treatment, leaning against the opposite wall and silently watching over her. We’re a little bit alike, problem-solving to avoid grieving.

There’s a daughter, a college student, who pushes her dad’s wheelchair through the chemo room, settles him into his chemo chair and then sits by him. He’s had several (scary) medical incidents — a fall in the patient bathroom, a sudden drop in blood pressure, a seizure — during  treatment. She attends the college by our house; we’ve talked to her a few times but I haven’t seen them recently.

Sometimes I feel anxious if I don’t see a face I expect to see. I wonder if that person is okay or too sick for chemo. Usually, when they finish treatment, everyone knows so I generally think bad-news thoughts when someone is “missing.”

Occasionally, I will see a patient who is NED (no evidence of disease), getting a port flush and talking about when it will be okay to get their port removed.

It’s been a rough few days.  On Friday evening, our dachshund, Shadow, lay his head down—in the traditional long, narrow dachshund resting pose—for the last time. He was 17 years old and he was family. My eldest and I didn’t sleep that night, what with watching over Shadow and with grieving his loss.

Very early the next morning, Ken had a CT scan because he’s been having chronic back pain and a scan was deemed necessary to rule out any metastatic activity. We returned home from the scan at maybe 9:30AM and we weren’t even back in the house 10 minutes before we had to head back to the emergency room urgently. They had found a massive embolism running the length of Ken’s leg and possibly another one at the top of his intestines. The oncologist said that it is very likely he also has blood clots in his lungs (was that supposed to be reassuring?!).

Thankfully, Ken was allowed to go home on Sunday, with his blood thinner strategy in place. For those of you who are curious, his blood thinner costs $100/shot, roughly $73,000/year. I am completely exhausted by the ongoing and ridiculous conversations I am forced to have with our insurance company about whether or not treatment is needed. The current issue is that the insurance company doesn’t consider his blood thinner dose necessary–they think he’s taking twice the amount he needs.  I literally have 10 days to resolve the latest conflict before he’ll be out of blood thinner and we’ll be back at the hospital. Patient advocacy is the most effective approach — phone calls to the cancer center, phone calls to the insurance company, phone calls to the pharmacy. Repeat as needed until you results.

In case there is any question, I am firmly of the opinion that payment for health care in the US is entirely a matter of patient advocacy and chance; in other words, the system is biased, unfair, and a HOT mess.  Politics aside (!), I am having a margin of success because I am well-educated, speak English fluently, and am familiar with the industry.  Ultimately, all I care about is ensuring that we can continue to cover the cost of the insurance, deductibles, and copayments for Ken’s care and that all the health-challenged patients I have come to know can also continue to get treatment without having to consider whether medications or food should be in the budget this month.

Anyway, stepping down off the soap box, let’s get back to Ken’s journey. (Ken says I shouldn’t call it that because journeys are supposed to be fun but I think he’s mistaken. Vacations are fun; journeys are just the paths we travel through life.)  We went to the cancer center on Monday, reminded by the specialists from the hospital that he should NOT have chemo … period. His oncologist kind of chuckled about that and said, basically, if Ken felt up to it, he really needed to have chemo and so, he had chemo.

And that brings me to today’s topic, the 12 gifts of Christmas. These are a little different than the familiar “12 days of Christmas” but particularly relevant to us this year. This Christmas, I am grateful for:

1. The CT scan scheduler, so determined to help us find an appointment and so very kind.
2. The emergency room and 8^th floor nurses who helped Ken with his treatment and supported him through a stressful night in the hospital.
3. The nurse practitioner and her (annoying) insistence on a CT scan that may have saved Ken’s life
4. The oncology social worker who stops to visit Ken at every chemo appointment and who somehow knew that I was crumbling and asked me to visit her in her office, just to make sure I am okay
5. Friends and family who check in, give advice and encouraging words, offer to run errands, and send notes (and treats (“Gromit, that’s it! Cheese!”)) Let me call your attention to this item’s placement in the traditional “five golden rings” slot.
6. The technician who, last spring, found Ken’s prior colonoscopy results
7. Customer service representatives who have helped me at least 30 times to get claims reprocessed and treatments approved. Yes, they can be a barrier but they are also human beings who understand and can help.
8. The super moon that brought my moon-loving mom close to me again, even if only for a little while at a time when I was feeling particularly lost
9. The stranger at the grocery store who asked if she could return my cart for me
10. The stranger at Costco who asked if Ken was okay (after seeing me helping Ken to the car) and offered to put the 40 lbs of cat litter and 50 lbs of dog food in the car for me
11. Hospital residents who think Ken’s case is interesting but also want to provide care in their eager, new-doctor, conquer-the-world  kind of way
12. The oncologist, the radiation oncologist, the surgeon, the urologist who have patiently answered our questions, while guiding, encouraging, and cheering Ken throughout this year’s horrors

It’s easy to talk about what a terrible year it has been – and it really has been a doozy! – but every day something amazing has happened; for that I am very grateful.

May 2017 bring you joy, hope, and peace.

The year is coming to a close. Every Christmas, I pull out one of my favorite books, A Christmas Carol. After you’ve read it as often as I have, you begin to look for the nuanced language because you know the story so well.  One of my favorite passages is, “…in short, I should have liked, I do confess, to have had the lightest licence of a child, and yet to have been man enough to know its value.” He’s referring, in that passage, to how easily a child sits in his/her mother’s lap, without really recognizing or appreciating the contact and love contained within.

My point in mentioning year end is that we’re six weeks from our culture’s annual “new beginning” with its stereotypical resolutions and lists of the “Top [some number] Best [fill in the blank]” (you know, the top 100 songs of, the top 10 toys of, the most influential people of). For me, the calendar is a reminder that by this time last year, Ken had started to notice some physical changes. He didn’t have a diagnosis yet but unbeknownst to us, he already had cancer.

Have you ever been to the Grand Canyon? Not a drive by or stand at the nice safe overlook at a visitor center…I mean, a walk along the edge and peer gingerly over the outcrop at the ground far below. (Perhaps, one of these days, I will tell the story of our visit, Haley’s heat illness (heat stroke?), Tristan’s fearless desire to conquer the canyon, Ian’s wanderlust, and my paralyzing fear of heights or, more specifically, fear of falls from heights.) Anyway, that’s where I am — on a precipice. I want to take a (GIANT) step back to safety but I can feel myself being pulled forward, downward.

The boys and I went to dinner recently with Ken. He was having a terrible day but we convinced him (perhaps wrongly?) to go to his favorite, Eat N Park, for an early dinner. (Eat N Park, for you non-western PA folks, is known for its reliable salad bar, which is Ken’s favorite dinner item.) You may recall an incident that I wrote about earlier this year, a running-to-the-bathroom-in tears incident that occurred for reasons I still can’t explain. Well, sure enough, it happened again at dinner at the SAME Eat N Park. I told my eldest afterwards that they are going to put my picture by the register like those grainy photocopies of bad checks and coupons at the grocery store — “Don’t accept this lady. She’s crazy.” All I remember is looking at my eldest as my husband hustled outside to sit in the car, in pain and too stressed to sit any longer, and suddenly my vision is blurry and tears are running down my cheeks.

We’ve run the gamut of Thanksgiving planning. At first, we tried to schedule a vacation. I know how irrational that sounds; and those of you who have said that we should have known better — well, you were right. However, Ken kept saying that he wanted to take one. The oncologist told him too. We thought we could make it happen. We planned it down to the taxi rides to ensure he would have the least amount of disruption or discomfort. But we were not successful and it was stressful for him and bad and that’s about all I want to say about that.

Then, we thought we would do Thanksgiving at our house so that he could rest and just eat a little bit and visit with his immediate family as much as he felt up to it. But that was another good idea gone horribly wrong. After a couple good and yet not good ideas, we canceled completely. He’s just not up to it. But that’s okay. The kids and I will be play some board games and when he feels like it, we’ll eat a little something together (maybe a little turkey breast and some mashed potatoes?!), with great thankfulness for the gift of our time together.

It’s hard to explain to others what it’s like to have a debilitating and life-endangering illness. Ken talks about “us healthy people” who aren’t obsessed with pain and death. I tell him that a big part of being healthy is recognizing that there’s lots of stuff that could kill, maim or permanently disable us but we choose not to focus on those things. If I thought about the diseases that could be taking root inside me, the things in my house that could kill me (fall in the tub, anyone?!), I’d be incapacitated by anxiety. I KNOW that there are limitless possibilities for pain and death, I actively choose not to worry about them. It’s impossible to push those thoughts away if you have that debilitating and life-endangering illness. And I think, more than anything else, that’s what separates us, that’s what Tolstoy was illustrating with his portrayal of Ivan Ilych.

Ken’s been having a lot of pain again. It scares me; I can only imagine how it makes him feel to have discomfort that he describes as being occasionally off the charts but mostly somewhere between a 3 and a 7. The medication helps with pain management but the fear of pain returning can’t be managed with tylenol and oxycodone.

We have another chemo session coming up on Monday. Wish him luck. More than anything else, he has come to appreciate your notes and texts.

 

There’s a leak in my resilience bucket. I keep refilling it but after 10 months of this horror, I have finally realized that there’s a hole somewhere and my resilience is slowly leaking out like air from a mattress.  It doesn’t matter how many times I refill it; the resilience level is lower every day.

Sickness makes people … irritable. No surprise, right? They don’t feel well; in fact, they don’t feel like themselves anymore. Ken has chemo brain clouding his thoughts. He says that, while he’s sleeping, he doesn’t have cancer. Just imagine that jolt when he awakens and remembers. It’s no wonder that he’s out of sorts.

My mom used to say, “Sticks and stones may break my bones but names will never hurt me.” Even better, Eleanor Roosevelt said, “Nobody can make you feel inferior without your consent.” Mostly, I just feel sad; although, to be honest, sometimes the arrow hits the target and I have to hide away from witnesses (kids) to cry a bit. Then I smack myself (metaphorically!), adjust my big girl underpants and get back to work.

The stupid crap I have to continually guard against is part of what is wearing me down. On Saturday, I opened a piece of mail from Ken’s oncologist. It was a bill for $7,800 +/-.  I’ve been expecting one, though not that large! Before calling to negotiate a payment plan, I checked the insurance company website, just in case… and sure enough it was another incorrectly processed claim.  Monday, I called the insurance company and said, “Take a look at my call history. I have another claim for you to reprocess.” But every single time I fix one, I also worry about whether I’ll accidentally pay one that I shouldn’t or that I’ll open an envelope with a large bill that we do actually owe.

We’ve been on a surgery pendulum. Let’s recap:  before the PET scan, the surgeon said “no surgery” and the radiation oncologist agreed. After the PET scan, the direction changed a bit. We went to Ken’s radiation check-up with some issues. Ken has some pretty significant pain so we needed to talk through some strategies to manage it. In addition, we had a lot of questions about the slow healing of the radiation damage.

Funny story — well, funny in a macabre way, I guess:  Ken’s describing his pain to a radiation oncology resident, who comes up with a tentative diagnosis to discuss with the doctor. The resident leaves the room and I look down at my phone. “I wonder how many other people are hoping ‘anal fissure’ is their diagnosis,” I murmur. I look at Ken and we both laugh.

Unfortunately, anal fissure was not the diagnosis. The radiation oncologist came in and talked to us about the PET scan results. The tumor is not, as he’d hoped, gone. It’s just smaller but radiation is no longer an option. He said that he’d have to double the radiation dose, causing damage that would not heal. The pain Ken’s experiencing is likely a result of damage from the lower dose radiation Ken received this summer.  To relieve the pain and address potential new growth of that primary tumor, the radiation oncologist wants Ken to have surgery as soon as possible. The oncologist disagreed, though, saying that Ken can’t be off chemo for two months.

What happens when the doctors aren’t aligned? Well, fortunately, they took us out of the middle and met at tumor board last Friday to discuss Ken’s treatment. The result is that surgery is off the schedule again. Chemo, however, is on the schedule indefinitely. Ken will have another PET scan at the end of the year or early January.

For now, I’m going to focus on planning Thanksgiving. Perhaps a little homemade pumpkin pie?

Hello, cyber friends. Can I state the obvious? Cancer sucks.

Many years ago, shortly after my mom passed away, I can remember walking from the bus stop to my office in a fog of sorrow, looking around in amazement that other people were so normal.  I think that’s the way Ken feels, caught up in his illness and surprised as other people casually go about their activities.

Ken’s PET scan came back with a combination of good, neutral and “eh” news. The primary tumor was significantly reduced by radiation treatment. There is a “suspicious” area that is probably new cancer but there’s still too much radiation damage to be sure. Finally, there is new lymph node engagement in the area around his aorta.

Since he is three treatments into the new round of chemo, the oncologist said that the treatment approach won’t change for now. I guess that’s good because this chemo has been particularly tough. Ken is exhausted until the weekend before his next treatment and some days he is quite (justifiably) grumpy.

Time for a funny story:  Last week, I had to fly (window seat!) to Tampa on a packed 7AM flight, on my way to a multi-day planning meeting. The middle-seat lady purchased a vodka and cranberry as soon as we were at cruising altitude; and not 5 minutes after she purchased it, she spilled it into my lap, down my leg and into my brand-new, birthday-present-to-myself All Stars. (If you know me, you know that I only have one shoe weakness, Converse All Stars. I buy one pair a year and wear them until they are shredded. It’s a darn good thing I bought the black ones instead of the violet ones I had considered!).  Really, when you think about it, I was very fortunate; I was also wearing black pants!

She had a rough flight. Before taking a nap on my shoulder, the poor lady spilled two more drinks, both on the aisle-seat lady. After all that excitement, she needed a nap!

Ken didn’t find my little travel story funny. He did, however, appreciate this joke that I read online last week:  What’s the difference between a hippo and a zippo?

Ready?

 

One is very heavy and the other’s a little lighter.

Hehe

He really could use some cheering up. Any suggestions? Or jokes you’d like to share with him?