We had some trouble with the chemo drug approval process. It was torturous. Literally (yes, in the original meaning of the word), it took more than 3 weeks to get his chemo pill approved. Toward the end of the process, the oncology nurse called, “Your drug copay is $3,000/month.” The radiation oncologist said we shouldn’t pay it, that Ken should just go on the pump.  That’s an issue, though. Ken hates that pump. I was worried too, about the whole process: home health nurses visiting twice a week, the pump sound every 1 minute and 17 seconds, no showers.

Trying to move things forward, I called the specialty pharmacy. They said they couldn’t talk to me because Ken hadn’t given permission. Here’s another learning since this Hell all started: it is possible to break through their bureaucracy. It serves them rather than the patient and it is flimsy.

I said, “I know everything about his care. You can’t possibly tell me anything that I don’t already know. So, why don’t you ask me questions and I’ll just tell you the answers.” She said something about policy and I said something respectful about being Ken’s primary support. She said, “What do you know?”  So, I told her what medicine he had to take, what his diagnosis was. I gave her his birth date, his street address and his phone number. She said, “Hold please.” When she got back on the phone, she was very nice and apologetic for putting me through “so much.”

Then she told me that the pills were $3,000/month, which, of course, I already knew. “Move ahead with it,” I told her. “We’re prepared to pay.”  I reminded her though that we needed the pills quickly as the delay was impacting Ken’s treatment.

And then we come to the clincher:  When she processed the medication for payment, I heard her say. “Huh.” I asked her what was up.  “The pills have a $0 copay. You don’t owe $3,000.”

Yes, that’s right. We almost put Ken through 6 weeks of pump HELL for an insurance mistake.  I logged in to the insurance website to check on the claim and saw that there was another one in process. It was the June chemo bill and it was $84,000. We don’t owe it. We’ve already hit the new deductible and all but $800 of the new out of pocket maximum. But when I thought about what it could mean if we DID owe it, I just sat there on the back porch on that beautiful, sunny morning and cried.

Ken’s been through nearly two weeks of radiation. He says that he can feel the beginning of the sunburn-like pain. The worst part right now is that he has to go to the hospital every day at 3PM for treatment. I hated the weekly Thursday chemo sessions but the daily radiation trip is far worse.

Going to a hospital every day for treatment is an exhausting ritual. We drive into the parking garage and I say “Hey there, how are you today?” to the man who gives us the ticket (yes, there is a guy standing at the gate who gives us a ticket and I have no idea why a guy has to do that but he’s really friendly). Then we ride the garage elevator down to floor 1 and take a meandering walk through the hospital to elevator A (down the hall with the memorabilia on your right to the coffee shop on your left, turn left at the red Security sign, and walk all the way down the corridor until you’re sure you’ve gone too far). We take elevator A down 2 flights to a sub-basement. When the elevator doors open, first we go to the desk and get our parking ticket stamped. After that, we walk to the radiation treatment area and the techs take Ken back for his radiation while I sit in the waiting room.

Funny story – last week, I was reading an e-book in that waiting room with my back to the TV (some terrible “daytime drama” was playing). Gradually, I realized that I was the topic of conversation. The women putting together a puzzle at the table near me were debating my gender. The discussion went on for a bit. “What’s she doing?” “You mean him?” “That’s a she.” “Are you SURE that’s a girl? I thought it was a guy.”

Anyway, Ken’s treatment is currently about 20 minutes long, focused only on the primary tumor but now that he’s on the chemo pill, the electron beam radiation will be added, another 20 minutes of radiation daily.

We lost someone dear last night and our hearts are broken all over again. I didn’t know that there could be grief strong enough to push cancer aside. Rest in Peace, lovely girl.

I can’t believe my last post was nearly a month ago. Forgive our absence from your lives and rest assured that we have been enduring.

Last Friday was Ken’s radiation simulation. What should have taken about 2 hours, ended up taking about 5 because Ken’s labs showed that he was dehydrated again. More than two and a half hours of our visit were dedicated to giving him intravenous fluids. (We had the honor of being the last patient/caregiver in the office.)

The radiation oncologist met with us for about 30 minutes to discuss what we should expect (pain like a bad sunburn about 3 weeks into treatment and lasting about 10 days after treatment) and to tell us his approach. He explained that they will use the results of the simulation to prepare for treatment. Apparently it takes approximately a week to determine the treatment plan, code the treatment into the computer, test it on a “dummy,” evaluate the tests, and repeat until the doctor is happy with the approach. They will call us later this week to give us his start date and to discuss what time he’ll need to be at the hospital every day.

Ken will also be receiving chemotherapy daily during radiation. We’ve been trying to get approval for the chemo pill since the beginning of June so Ken won’t have to wear that stupid chemo pump (with its infusion noise every 77 seconds.) After a week of trying to navigate the system to get the approvals, the doctor’s office called to ask for help.  I was on the phone with our insurance customer service area for more than an hour. Even the customer service rep had to call three separate departments within United before she got an answer. “Approved,” she said.  Two days later, I received a denial letter stating that his “BSA” needed to be above 1.92m^2.

Seriously, what the heck does that even mean?! When I called the doctor’s office, the nurse said that the insurance company had made a mistake. They had the wrong height for Ken and miscalculated his “Body Surface Area.” She called them and, finally, the chemo pill is approved, though I won’t really believe it until we get the approval letter. Ken will need to take 6 pills daily, Monday through Friday, for approximately 6 weeks.

What more is there to say? To quote DH Lawrence, “I never saw a wild thing sorry for itself. A bird will fall frozen dead from a bough without ever having felt sorry for itself.” Self-pity? What would be the point? It will not change the path we must walk.

 

I watched The Martian on my trip to Tampa recently. Usually, it’s my preference to read the book before watching the movie but I’m having trouble immersing myself in books these days. I just can’t concentrate, I guess. (That’s a real disappointment to a reader!) It took me at least three weeks to read a little book called Courage and Defiance about the Danish resistance efforts during WWII. (Speaking of WWII books, last December, I re-read The Guernsey Literary and Potato-peel Pie Society, a novel that I highly, highly recommend about the German occupation of Guernsey.)

Anyway, back to The Martian (in case you haven’t seen it, don’t worry; there are no spoilers in here) and our main character, Mark Watney, saying:

At some point, everything’s gonna go south on you and you’re going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That’s all it is. You just begin.

That’s life, right?!  Some days, I think: I just can’t do it (or can’t do it anymore). But what does that mean, exactly? If I just stop right now, what would happen? No clean laundry, no garbage cans carried out to the curb. The bills won’t get paid. The little guy: 1) will not do his homework; 2) WILL stay up too late; 3) might eat cereal (or candy) for dinner. Well, that won’t do and so, I “get to work.”

Speaking of which, I’m late on the updates about Ken:

[UPDATE] Yes, we met with the radiation oncologist last week. He was fantastic: kind but direct (no sugar-coating for us!). We’re also very fortunate to have a close friend at the same doctor so we can share support and learnings and, someday soon, successful outcomes. Ken’s cancer is so rare the doctor did a bunch of research of treatment options while we were there and then consulted with Ken’s oncologist. They agreed to use radiation on the primary tumor. As Ken reminded me this morning, the radiation oncologist is going to use electron beam therapy on the tumors in the groin, pelvis and scrotum. He says the electron therapy should prevent these areas from growing further during treatment of the primary tumor.  The radiation oncologist says to use anything more intense will cause significant skin damage that would be slow to heal and could delay surgery or the introduction of Avastin to Ken’s chemo cocktail.  He also described radiation like a really bad sunburn and promised that there are creams to manage any discomfort. Huh.

Thursday was a chemo day. Since we can’t start radiation for at least two more weeks, the oncologist said that Ken needed a full chemo treatment last week, pump included. That was kind of a bummer and Ken had a miserable weekend. The rationale is irrefutable though:  if chemo stops, both doctors are confident that cancer will take a road trip through Ken’s lymph system which would be a very bad thing. And so, “Pumpy” came over for the weekend.

Our new health insurance became effective on June 1 and you know what that means, right? We have to get approval all over again for his treatment plan. We also have to get new scripts for all his medication since our prior insurer forced us to use their mail order pharmacy. I wish health plans would transfer treatment plans and approvals like 401(k)s transfer balances.

Because it took me a whole week to post, we had chemo again today. It was a “short” day and we were back home early in the afternoon. I worked all morning from the cancer treatment center very well (technology is AMAZING).

A quick story: we’ve stumbled through some interesting physician dynamics throughout our journey. The rare nature of Ken’s cancer has made him interesting to a variety of physicians (and let me tell you, it feels a lot like the extended family circling around the aging billionaire waiting to see who is in the will). We’ve ignored referral patterns and had some weird communication issues as a result. The most interesting however was the conversation we had last week with the radiation oncologist. He told us flat out that we need a different surgeon, one with more experience dealing with complex cancers. AND he said that Ken needs to have his surgery in a different hospital than the surgeon admits to. Apparently, that’s a fine hospital for appendicitis. (As Haley would say, “Burn!”)

(By the way, this week’s blog title is a quote from the original Star Trek series, Season 1, Episode 19.)

Ken often thanks me for sticking by him through all this hullabaloo (my word, not his). Perhaps I have a more optimistic view of humanity but I think most people would not abandon their sick spouses. Honestly, the first time he thanked me, I scolded him for thinking that I would be so shallow. Did he not listen to our marriage vows?! In sickness and in health, the commitment is right there. I DO have personal experience of a person abandoning his sick (and dying) spouse but I prefer to think of that guy as the exception who proves the rule.

Life has increased in complexity. I just started a new job with a great company but had to travel for the first three days. That was stressful for me and very stressful for all those I left at home. Ken warned me not to (I’m quoting him here) “die in a plane crash,” which is the last way I would choose to die. The second to last, in case you were wondering, is death by fire. I fell into a fire pit at 4 or 5 years old and can still remember the smell of my burning hair.

Haley got up at 3AM to drive me to the airport for my 5:35AM flight. She also helped Ian with homework every day that I was gone. A dear friend brought dinner over the first night and the leftovers lasted into the next day. My eldest came over Tuesday to entertain his little brother so that he wouldn’t spend too much time on that (darn) computer. Other friends checked on Ken and the kids to make sure all was okay.  Ken sometimes says he couldn’t survive without me but I say none of us could survive without our community of caring friends and family.

I knew that my kids could manage without me — two of them are legally adults (okay, Haley’s three weeks from legal adulthood). If they can’t survive without my presence for three days, I clearly failed Parenting 101, aka, Help Your Children Grow To Adulthood. Still, in the past, the mantle of parenthood would fall on my husband in my absence. (Okay, okay, it IS true that, on some of my many business trips, the kids would call to say that they hadn’t eaten anything but cereal in 4 days. I’ve always assumed that was hyperbole. Haley would like to stress that it never was, and that she once survived five days thanks to nothing but Raisin Bran, up until she ran out of milk and had to beg her father to please go buy more.)

Ken just is not in a position to care for his kids right now. He’s physically exhausted, collapsing into bed early in the evening and generally sleeping all night. He’s also hypersensitive to loud noises (like those made by kids and pets!) and emotionally bereft. He’s still trying to figure out who Ken is in our “new normal.” This means that the when I’m not there, the “inmates are running the asylum,” so to speak.

It’s going to be a tough week. We meet the radiation oncologist on Wednesday to get the details about Ken’s treatment. That appointment will be very stressful, as you might expect. Then, Thursday, we are back at the hospital. He’s temporarily done with chemo and will get weekly Erbitux until radiation starts. I’m hoping that a break from that stupid pump will lift his spirits.

My kids and I have many strategies for distracting ourselves from tedium, stress, etc. When they were younger, we’d take turns reading chapters of a book in the car (a personal favorite is Granny Torrelli Makes Soup), play I Spy or Twenty Questions, and do memory games like What’s in Granny’s Trunk. More recently we’ve been guessing movie quotes. Ian got this one right away in Target. It SO applies to our lives right now. Do you recognize it without google?

“I’ve got a judge that’s just aching to throw me in jail. An idiot who wants to fight me for two hundred dollars. Slaughtered pigs. Giant loud whistles. I ain’t slept in five days. I got no money, a dress code problem, AND a little murder case which, in the balance, holds the lives of two innocent kids. Not to mention your– thump, thump, thump— BIOLOGICAL CLOCK – my career, your life, our marriage, and let me see, what else can we pile on?”

Here’s hoping we all have a peaceful week.

PET scans are emotional roller coasters. Everyone obviously wants rainbows and unicorns but trust me when I tell you that during the anticipation period, it’s all worry and dark despair. A lot of bargaining and fortunetelling occurs. “Let it just not be BAD news.” “If I could just see a little improvement. It doesn’t have to be much.”  “If it’s bad news, the doctor will take us into his office.” “If it’s bad news, the doctor will socialize with us first.”

You know what I’d like?  I’d like to turn the PET monitor away from the patient. I think it is impossible to ask a patient not to look but they really shouldn’t.

We had to wait until early afternoon last Thursday to get our PET scan results. Ken kept asking me if I had gotten the details. I hadn’t, but I think he wanted me to know so he could try to read my face.

The doctor came over to Ken’s chemo lounge and said something like “Let’s talk about your treatment” but he couldn’t find a chair. He wandered around a bit and then stole one from the nurses’ station, sat down and rolled over to us. He has a surprising amount of charm, which I mostly forget when he’s not in front of us. I guess he’s doomed to be forever linked to CANCER and everything about that is negative.

He jumped right in, holding the report in his hand. It’s mostly good news: The iliac lymph nodes are clear of cancer and the scrotal tumors have shrunk some. The doctor said to Ken, “That’s good. You should be smiling.” On the not-bad-news front, the primary rectal tumor is basically unchanged.

The doctor is proposing a change in treatment. He said that surgery is out for now because Ken would have to have about a one month chemo break before and after surgery.  According to the doctor that opens a big risk for the cancer to spread to other organs. Instead of surgery, the doctor proposed radiation and chemo combined.

The plan is for Ken to have five days of radiation and a two day break, then five days of radiation, etc. While he’s getting radiation, he’ll either be wearing the chemo pump and getting 5FU infused OR he can take 6 or 8 chemo pills daily. The good thing about the chemo pill is that he can still go into the office which is important for his mood. The bad thing about the pill (besides the fact that it requires special authorization from his insurance company) is that it is remarkably expensive. We have a 20% copay, which means that we could spend roughly $1,400 on PILLS. I am beyond grateful that we have the means to pay.

In the early days of cancer, sleep eluded Ken. Now, he sleeps a lot.  I sleep fitfully and my dreams are filled with terror. Haley’s sleep is equally disturbed — menacing dreams with little substance. Sometimes Ian has them too, but less frequently. When he has one, he’ll curl up with me and we doze, comforted by each other’s presence.

The pets are agitating Ken. The kids and I brainstormed and came up with a plan.  The turtle is the greatest amount of work so we’re going to move him outside. Haley researched and — by herself — created a turtle pond in the backyard. The red-eared slider moved into his new place this morning. He seems happy (it is somewhat difficult to assess the happiness of a turtle). My son has agreed to temporarily take our most challenging pet, a cat named Pepper. She is as mean as a snake (are snakes actually mean?) with occasional attacks of aggressive snuggling for reasons that only cats could explain.  The master bedroom has no door so we’re going to add some kitty deterents to the entrance to help keep the other cats out of his space. They easily slip through or leap over the gate that keeps the dogs out.

The PET scan results are in and we are waiting to talk with the doctor. I’m distracting myself (though my stomach knots belie that) with work but Ken is hyper-focused on the possible results. His lab work came back and his magnesium is low again. If he has to get a magnesium infusion, this long day will be another hour longer.

I received an anonymous comment on the blog recently and have been considering what to do with it: show it and respond via the comment field, ignore it, or respond to it in a post. As a writer, I believe strongly that increased understanding, and sometimes consensus, comes from discussion. Hiding comments that don’t reflect my opinions  will not further the understanding of either individual. As such, here we are, about to embark on a potentially touchy discussion about RELIGION.

The original comment:

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Deb I read your blog and you are right on in all that you write. I too am going through the same valley yet there is a difference , I am going through with Jesus Christ.He gives eternal life , hope for hopeless , joy in the pain , shelter in the storm . Psalm23 says Even though I walk through the darkest valley ,YOU ARE WITH ME.God is right there with you and Ken, all you have to do is ask Him for help and He will. He will give you His peace , strength , mercy and grace. He will give you His Son and all of the promises in His eternal word . This doesn’t mean that He will heal your precious Ken on this side but His promise is that He will heal Him completely on the other side HEAVEN.JESUS IS THE ONLY WAY TO GOD , HE DIED FOR OUR SINS AND ROSE AGAIN FOR Our SALVATION.Try Him Deb . With much love .. A person who has been praying for you and Ken.

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Anon, as I have nicknamed our anonymous commenter, refers to a Psalm that I used to say every night before bed, in the more formal language of the King James Bible:

He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

Since I’m generally silent on the topics of religion and/or spirituality, it may be a surprise to some that I had a Christian upbringing, raised by a devout Catholic mother and even confirmed into the Catholic church. My ever-pragmatic mama, however, cautioned my sister and I that, “God helps those who help themselves.”  In other words, all our pray was good for naught unless we were also willing to act. It was her way of reminding us that our God (not necessarily yours) does not trouble Himself greatly in the affairs of the individual.

To be perfectly honest, and hoping that you will all understand that I refer to MY beliefs and that I respect fully that your beliefs may and probably are somewhat or greatly different — if God will cure Ken based on my prayers, then (apologies, God, for telling You what to do when You haven’t even asked my opinion), God should cure everyone with cancer. As important as Ken is to me, his children and extended family, and his friends, he is not intrinsically more important or valuable than any other cancer patient/survivor. If God is planning to hand Ken a cure, let all cancer patients be cured.

If, however, as Anon indicates, our prayer is actually for the next life, I fear our beliefs will differ there too. I don’t pray for potential benefit in the next life: I pray for strength in this one.

Because I respect greatly a well-turned phrase, I’ll end our religious/spiritual discussion with this movie quote:  “I know I promised, Lord, never again. But I also know that YOU know what a weak-willed person I am.” Some of you will recognize that quote. If you don’t, you surely need to drop everything pretty much right now and watch Ladyhawke. You won’t be sorry that you did.

Wish us luck or if you like, pray for our continued strength of purpose, this week. Today we’re at the doctor. Tomorrow is Ken’s second PET scan. Thursday, he starts round 7 of chemo.

Have a wonderful day, everyone.

I wanted to talk to my mom today. Sometimes I think I can feel her presence but today, when I needed her to be HERE so much, she was entirely absent. People newly experiencing a loss sometimes ask, “Does it get better?”  All of you “grief veterans” know that, in truth, you never recover: instead, you emerge slowly from grief as from a chrysalis, not — probably — a butterfly, but a new creature nonetheless.

A few years ago, after my father died, I had a conversation with him. He took my hand and asked me why my sister and I had sold his house. He didn’t know that he’d died and was very sorrowful. I was deeply asleep and awoke still feeling his hand in mine. Since our relationship was complex and not particularly warm, the dream visit was confusing. Why me instead of my sister, with whom he was much closer? She and I talk jokingly about his presence but the truth is that the dream visit was really the only time I’ve felt like he was close.

My children have no living grandparents. Ken and I have become the historians, telling the children stories about our early lives and those of our parents. I remember the stories my grandparents told me and want to pass that experience and history on. When I hear him talking about the past, I’m anxious: will I have to tell Ken’s stories for him? How could I do them justice?

The weather was so beautiful today. I like to mess around in the dirt (I call it gardening but the plants know better) and spent part of the afternoon quietly weeding while my older children worked and Ian went for a short walk with his dad. The possibility of a new sunburn makes Ken very anxious these days so he was wearing a shirt with long sleeves and a hat with a huge brim to shade his face and neck.  He went to sleep shortly after their walk and when I went up to check on him a little while ago, was still soundly sleeping.  The thought pops into my head, though I try not to give it space: will there be another Mother’s Day together?

“Take yourself for instance; yesterday you were better off than you are today but it took today for you to realize it. But today has arrived and it’s too late. You see? People are never happy with what they have.” Recognize this quote? The movie is very violent, brutal really, but excellent as well:  Lucky Number Slevin.

The quote is true– Ken talked this morning about how attractive life before cancer seems right now. He said that he never appreciated how good life actually was until it became frightening and complex.

It’s Erbitux day: his weight is down 5 pounds. He says it’s because he’s not wearing his heavy sweats again (they’re in the washer).  I think his comment displays an unusual amount of optimism — heavy pants will not account for his weight loss.

On the positive side, his lab work is good. We were wondering if low iron was the culprit. His iron is low but not THAT low. He was so exhausted yesterday that he couldn’t work. He really tried; we drove all the way to town but he was lying down in the car. There was just no way. So, we went back home and he went back to sleep for hours.

The rain is playing havoc with our hilly, postage-stamp backyard. One of the retaining walls collapsed — mud everywhere. I took pictures of the mess and shifted all the flagstones; I’d write “lifted” except that I couldn’t even pick some of them up so I rolled and pushed, as necessary, to move them aside. Then I shoveled and shoveled and shoveled until I realized that I needed help — Tristan to the rescue. Yesterday, on his day off, he rebuilt the wall for me. I’d like to say I helped but the difference between his easy lifting and placing and my dragging and pushing was laughable. Ken came outside to watch for a few minutes but he’s learned the hard way to stay out of the sun. His sunburn is finally healing and neither of us wants to go through that experience again!

 

There were emergency vehicles blocking one lane on my route yesterday. My first response, you may have experienced this yourself, was annoyance at the delay. The road is limited access so I couldn’t even zip off to a side street and go around the problem. As we all merged left and crawled closer to the first responders, I realized –because they were right THERE in unavoidable plain sight — that one of them seemed to be doing CPR. (My momma used to tell us not to look at accidents. As a young girl, I disregarded that advice and expect, more than 30 years later, that

I will never erase the image of the dead motorcyclist lying face-up on the road, blood pooled around his head.) Seeing the paramedics bustling around, all I could think about was that this person’s loved ones had no idea that their spouse, friend, parent, sibling was lying on the ground, on the side of the road, surrounded by people trying to save his or her life. It’s possible that I won’t ever know the outcome and I’m not, TBH, sure that I want to. I can imagine a happy outcome but I won’t be able to erase a bad one from my mind.

I have a note from early March in my phone:  “Dear cancer, you may have robbed us of our peace but you did not rob us of our identity.” What does that mean? Is it even true? Sometimes I wonder if this is really our new normal or if we’ll ever get there. Our journey is so very new – we finish round 6 this week — a drop in the chemo bucket for sure. Is there a time “after” cancer? Once cancer takes a seat at the table, do we ever get to show it the door?

We’re struggling with increasing symptoms and the worry their existence generates. How do you distract yourself from a life-threatening illness when it is continually present? Discomfort, bleeding, visible tumors — these are hard to ignore. There are so many other intrusions introduced by cancer. I don’t mention them much but they are decidedly present and unforgettable, including the yellow waste container for disposing of medical waste generated during pump removal (there’s so much waste).

For me, as difficult as chemo is, I think the hardest part of cancer is not being able to get it out of our heads. I dream about dread and awake to dread. It is not restful. Ken actually has fairly pleasant dreams. He says waking is the awful part. For just a moment, as his eyes open, all is good. Then, he remembers and is jolted by overwhelming sorrow.