Everyone’s a medical professional

One of the lessons I learned about being the caretaker for someone with cancer is that everyone fancies themselves a medical professional. Oh, they don’t boast themselves as such. But everyone has an unscientific opinion about the causes of cancer and its cures based on hearsay, popular “science” articles, natureopathy, conspiracy theories, and, yes, even spirituality. It’s frustrating as fuck. Sorry for the language, but as a caregiver, I’ve heard it all and the language is totally appropriate.

First and foremost, there is today a general mistrust of science and the medical community. I don’t understand why — it could be the dumbing down of our nation of the late, or it could be just that people don’t understand science or the scientific method at all. I won’t even wager a guess as to where it comes from. But I’ve heard it all from abstaining from sugar to CBD oil (or even just straight marijuana, cuz yeah, pot is the magical cure for everything, don’t you know).

What is most affronting is the fact that instead of saying something like, “Oh, I’m sorry for this terrible diagnosis you received. I’m at a loss for words,” people immediately start pinging you with articles about special diets, prayer circles, and latest scientific research (the latter of which would in fact be helpful, except you aren’t allowed to just start taking medications that are currently in clinical trials — there is a qualification process to that — and not all medical research is available to you at all times). I know that people are intending well, but as a caregiver, this intrusive passing along of information makes you feel completely inadequate. As if you weren’t doing everything you can already to get your loved one to the best care possible. And believe me, I’ve done everything within my reach to find a cure for Crow (within the range of actual scientific discovery and medical care currently available; I do not try wacky hearsay homeopathic “cures” cuz, sorry, not real science).

The conspiracy theorists are the worst. They fill your head with misgivings about the medical community and your doctors. And even though you know these people are full of bunk, it still sits in the back of your mind as a judgement on your caregiving abilities. Maybe pot is the cure for everything, you think in the dark hours of the night when your mind is over-reacting to everything. What if there is a cure they are holding back?

Of course, that is totally dumb. Crow’s neuro-oncologist at the Cleveland Clinic is probably the kindest, most compassionate doctor on his care team. He’s the only man who handed me a kleenex on the day of Crow’s diagnosis when I couldn’t hold back and he looked pained and almost kind of tip-toed into the room. I will never forget him for that. He always sensed when I needed kleenex every day after. He called me after hours when I had questions and he worked with us to find the best treatment plan for our lifestyle. There is no way in hell that I believe that this man would withhold a cure if he knew of one that exists. He’s on every tumor board, reads research, attends conferences — this man wants to find a cure for glioblastoma, I can feel it in his gestures. You could ask him about anything related to glioblastoma research and he’d give you all the information he had about the effectiveness of that treatment. I think at the end of the day he might have even respected my informed questions. I was really good at biology in high school. I get this stuff on some level. I’m not your average caregiver, going along with the flow.

The biggest piece of non-scientific advice people dispense is in regard to sugar. For some reason, some wacko got it in their head in the past that because tumors feed on blood sugar, that abstaining from sugar will starve the tumor. I point blank asked several doctors on Crow’s care team about this and they said it wasn’t true. I even looked it up on the American Cancer Society’s website and it is in fact listed under the myths about cancer. You will always have sugar in your blood, no matter what you eat, because a lot of food turns into sugar. The tumor will find a way to feed itself. The only link between sugar and cancer is obesity, which in itself is a cancer risk. (I know a million people will want to debate me on this by sending me links to sites that say differently, but whatever, I will check your sources and honestly a lot of stuff on the web is propaganda and not real science.)

I think the real kicker is the way people talk authoritatively on the subject, as if they really know. They will tell you to give your loved one [insert magical cure] as if it is the only thing that will save them. And, of course, that the medical community is hiding something so that BigPharma profits. Whatever. I’ve heard it all and I’m sorry but I think it’s all wrong. I don’t believe in conspiracy theories — too many people would have to know and, as they say, two can keep a secret so long as one of them is dead. But thanks.

Prayer. Another popular cure. Because somewhere in here the magic of deity can rescue you if all else fails. First, I don’t believe a god, at least not the kind of god described in any text in any earthly religion I’ve encountered. The god of those texts always has some sort of agenda, most of which benefits only those who follow him/her. No thanks, again. Second, if there was a god, and he/she did have the ability to randomly honor some with a cure, it seems to presuppose that said god gave the illness to a person in the first place. Who would do that? I suppose if you believe in good and evil, maybe evil causes disease. I don’t know. This is too much theology for me. So I also find theology a bit offensive, especially because people use this time —  now that someone has a terminal illness — to first assume that you believe as they do, without asking, and then they thrust their faith upon you. And if you say, “Thanks, not a believer, but the thought is nice,” people often want to debate the subject with you. It really puts a person like me in an awkward position.

I’ve been approached about religious subjects from people with whom I did not even formerly have a relationship that included a topic of religion. And they felt like it was fair game to bring up these topics. I assume people think they are being a help, but again, it’s like when the Jehovah’s Witnesses knock on your door and demand to talk — you just want to get them off your porch as fast as possible. Because no one wants to discuss religion, no one, except maybe your church friends, so please, please stop. Crow’s faith has always been very casual, and he frankly never liked talking about religion, even though he said he was Lutheran, so it was awkward for him too.

Cancer becomes a community spectacle, it seems. And I’ve not at all liked this part of the disease.

 

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Wearing my heart on my sleeve

My new tattoo

U2 opened their 2018 Experience + Innocence tour with the obtrusive sound of an MRI machine running while images of an MRI scan of a brain flash across the screen. Then the opening song begins — “Love Is All We Have Left,” the moving opening track to their 2017 album, Songs of Experience. I have loved this song from the moment that I heard this album — it relies more on the strength of Bono’s gorgeous voice to carry it rather than the music — but hearing this song live, in the context in which it was presented, haunted me. I certainly know what an MRI sounds like… and I know what a brain scan looks like… And at this point in my life, after having lived every few months of my life on edge waiting for the results of an MRI, I totally connected with this opening.

I saw U2 this year at their two shows in Chicago on May 22 & 23. Crow came with me to the first show, but it was too loud for him now — he’s been very sensitive to sound since his last round of radiation in January — and even with his ear plugs in, he couldn’t take it. So I went to the second show solo and he was happy to spend the evening hanging around our B&B. It was the last trip we took before everything went really south. We did spend sometime together during the day on the 23rd, sight-seeing at the Lincoln Park Zoo and the Notebaert Nature Museum. I made him do a lot of walking around town… and little did I know that in a few short weeks, he’d no longer be able to walk, even at his slow pace.

Anyway, due to my state of mind at both shows, I was profoundly affected by the opening. It got me the first night when I didn’t know what to expect; the second night, it nearly brought me to tears. The refrain continued to ring in my head in the weeks that followed: “Love is all we have left / The only thing that can be kept.”

I decided shortly after that show that I would get the tattoo of the gray brain cancer ribbon on my arm, as I’d been planning to do for awhile, but that it would also bear these words from the refrain.

At the very least, it’s a simple love letter to my husband. Brain cancer has cost us to lose a lot of everything — freedom, joy, adventure. Dare I say, as Bono so aptly reminds us throughout the concert, we have also lost a bit of our innocence. But the one thing we still have — the only thing anyone ever has in life that they can keep forever — is love. Love is the only thing that we give each other in this life that we can take to the grave and that others can keep when we ourselves are gone. I still have the love of my grandma Herrmann in my heart as well as the love of my first husband, Mike. If there is life beyond death (of which I’m highly doubtful), love is the one thing that transcends the barrier between corporeal and spiritual. Love is the point of our existence. That is what I hang onto.

The secondary purpose of this tattoo is a bit more selfish. I put it on the inside of my arm so that I could always see it when I am bike riding — the way arms are positioned when gripping the handlebars of a road bike will cause my tattoo to be displayed prominently. I can look down at it for inspiration when I want to give up. I can easily turn it around to view it when I’m not biking and I want to give up on anything. I put it there to remind me, always, that I should never take a moment or a person for granted. Somewhere along the way, despite having learned from the death of my first husband, I forgot this. I let myself believe that I was owed a happy ending. I forgot that life does not work this way. Whatever the future holds, I need to look at this reminder to take everything in perspective. Happiness and joy are fleeting and I must remember, always, to appreciate each second of those moments. Now, because of this tattoo, I will never forget again.

ETA: Video of “Love is All We Have Left”

I’m not ready to grieve again…

So it’s been over two years since I last blogged here. My world has been full of highs and lows and I just couldn’t bring myself to write about them because writing means that I have to feel those random thoughts in my head. The act of writing things down makes you face your feelings and I just couldn’t handle that. And a part of me felt like talking about what was going on would somehow jinx my husband’s treatment.

Yeah, when faced with a life or death situation, even the most reasonable, rational person becomes rather superstitious. Even now, I can’t help but feel that my husband’s prognosis is somehow my fault. It’s all a matter of timing, but the morning of his first seizure, we had a fight. Rationally I know it was bad timing, but the superstitious part of me feels as though life deliberately dealt me a blow to remind me that everything a person has can be taken away just as easily as they can be given. Once again, I got caught off guard. Ever since his first seizure, I’ve believed on some level that my lack of positive thinking would cause the failures in his treatment. I’ve spent so much energy pushing away negative thoughts the moment I have them, feeling personally responsible for Crow’s health. It was exhausting and ultimately fruitless.

On June 8th, we were reminded that glioblastoma always wins. Crow’s MRI revealed significant growth after two years of every standard treatment for the disease that is used by the medical community, plus my last ditch effort to try the experimental immunotherapy medication — Pembro — for which we drove every week to OSU’s James Cancer Center because it was not a therapy available at the Cleveland Clinic.

Crow’s health had been deteriorating significantly in the week before his MRI. He was not longer getting up to get himself breakfast or lunch while I was gone at work. He was barely making it to the bathroom to pee. He was significantly losing his balance. He struggled more than ever to communicate. So I can’t say I was surprised by the results. But I still felt myself blindsided. No one wants the truth confirmed, even when it’s staring you in the face.

We decided to give in on this fruitless battle and switch to in-home hospice. And that is where we currently stand. This week marks a month. The prognosis the OSU doctor gave us was two weeks to a month. And here we are.

Crow can no longer balance enough to walk. He can still lift himself and move from the wheelchair to the couch, another chair, or the toilet. He can slowly step himself down the stairs in our garage to get into our car, as long as he has something to hold onto. He doesn’t like riding in the car anymore, though, so taking him out always requires an Ativan and I have to endure a lot of mournful griping. Yeah, the man who once could not sit still cannot stand to leave the house.

I’m taking care of him 100%. I work for the most understanding company in the world (I started working there in March 2016) and they’ve given me a lot of leniency, which has included a work from home arrangement and the understanding that my hours on may be intermittent. They haven’t demanded much from me and I know I’m so fortunate to work for such an amazing group of people. It encourages me to continue working for them when all is said and done because they took such good care of me in my time of need. I know a lot of people are not as fortunate as I am in this and I’m so thankful to have landed in the right place at the right time.

As long as he is still alive, I don’t feel moved to tears. There’s some weird, optimistic part inside of all of us that hangs onto every thread of hope, even when you know that hope is lost, simply because a person continues to breathe and talk. Even though that person is a shadow of the person he once was. And you know he’s not happy. And he never smiles anymore. And his response to every question is, “I guess so.”

There have been moments in which we’ve had a slight heart-to-heart and I know that he’s still aware of a lot. The other day I told him that this was not supposed to turn out this way, that we were supposed to grow old together sitting in our rockers in front of the window of our mater bedroom, like we planned. He said, “It’s not fair.”

And it’s not. And I’m sorry I forgot that happiness isn’t forever; it’s just a bit of light that shines occasionally upon us, but it’s fleeting and it’s gone before we remember that we should have been appreciating every second of it.

There a moments, though, when the grief I’m running from hits me in the face. It’s in very small things. Like this morning when I reached for a can of pop in our closet and I realized that the last person to stock us up on the dwindling stock of Zevia was Crow, back when he was still driving in late April, early May. Just stupid little milestones knock me off balance. It’s not always in the obvious things like scrolling through the Facebook memories function.

I know that when he’s gone, I will hit these things all the time. In everything. This entire house. I won’t be able to look in my closet at his clothes or his books in our library or our happy faces in our wedding photos. It’s terrible knowing what grief is like, having already gone through it, and it’s what I spent the last two years running from. It kept me from waiting until the very last minute to have Power of Attorney papers drawn up and signed. It kept me from going with Crow to look at cemeteries (he eventually did that with his mom). It is keeping me from calling perspective funeral homes, as I should be doing, because no matter what I logically know, I still ridiculously feel that preparing for these things hastens their approach.

I’m not ready for any of this. But how does one prepare to lose someone? I’ve been through both scenarios now and I have to say that though a cancer diagnosis gives you more time to get things in order, or do the things you wanted to do (we went to Yellowstone last summer for a week). it’s the worst way to watch someone you really love suffer. The ups and downs of all the barbaric treatments. Cancer really makes you realize how powerless you are.

 

Deja Vu

My husband, Crow, had a seizure on Thanksgiving.

He’d never had a seizure before, ever.

A few hours before the grand mal seizure, Crow had an episode of aphasia. We were sitting together at the dinner table, well after our Thanksgiving meal, reading the Black Friday ads. We were at his mom’s house, visiting, and we’d planned to go Black Friday shopping, as we do every year, the next day.

Crow’s step-father, Bob, was making out his Christmas list and asked Crow if he knew what a certain type of wrenches were.

Crow responded, “What about your username?”

Since he’d been reading an ad at the time, I thought that he, like me, was only half-paying attention to the conversation. But I looked up.

Bob asked the question again.

Crow’s response was equally as confusing as it had been. He looked at us like he couldn’t understand why we didn’t understand him. “What?” he asked.

We explained to him that his response had nothing to do with what Bob had asked. I wasn’t sure whether he was goofing around, but I started to get a little scared. I’d heard of aphasia (from an episode of Star Trek: The Next Generation, but I since had learned it was a real thing because I look everything up) and I knew it was a sign of a stroke or something equally as serious.

Crow told us he needed to drink some water. We’d split a 24oz beer, he’d had about 3/4th of his, and he was convinced he was just reacting weird to the alcohol. It was the only beer we’d had all day. I’d opened it to relieve the tension of a day spent with the in-laws, which is always nerve-wrecking to me because I feel like I have to be on my best behavior, carefully choosing my words and being on guard. I’d wanted to cut a little of the edge off that I was feeling.

Privately, I told Crow that I’ve been drunk and I’ve been around a lot of drunk people, but I’d never known anyone drunk to not understand what was going on. The episode had subsided and he started feeling more normal so he was shrugging the whole thing off.

I told him that what had happened was a sign of something serious and that we would see a doctor when we got back to Akron (since we were in Toledo for the weekend). He seemed okay, but I did not want to take any chances; I’d learned from never forcing Mike to see a cardiologist after his cardiac incident in Detroit that I should take all medical issues seriously. Crow still didn’t seem convinced.

(I learned in the days that followed that Crow had actually experienced a sudden bought of dizziness and an inability to understand the words he was looking at in the ad.)

He was acting weird as we got into bed, however. He had a headache and he kept getting up to go to the bathroom. He even took out his cell phone and started to try to tell me the password to an app he uses to track all his account passwords.

I was just starting to get to sleep when he nudged me awake. He sat up in bed and looked at me, but said nothing. His stomach was making really weird noises and I thought that maybe he had to throw up. I asked him what he wanted — did he need me to get him a garbage can to throw up in, or did he want me to help him get to the bathroom? He did not respond.

And then his whole body started to shake. He slumped on his side and his head and arms and legs jerked around. He was making very loud breathing noises–each exhale was a loud burst of air. I recognized immediately that he was having a seizure, even though I’d never seen one before (except on TV).

I ran downstairs to where Bob was still up doing dishes.

“Craig is having a seizure or something!” I said frantically.

Bob asked if he should call 911 and I said yes.

I ran back upstairs to find Crow still having the seizure. Now he was foaming at the mouth. I didn’t really know what to do at that point, so I just kind of stood there. Bob eventually came upstairs with a cordless phone because the 911 operator wanted to talk to me since I was witnessing the seizure. She told me to make sure he stayed on his side.

The seizure stopped and Crow seemed dazed. He sat up on the bed with his legs over the side. I called his name but got no response. He looked up at me with lost, dazed eyes. I wondered fearfully if the seizure had made Crow permanently unable to speak. Was he lost forever now? Like a stroke victim?

Crow’s mom arrived in the room and he slumped against us. We rubbed his back and called his name but he said nothing. Meanwhile, I was keeping he 911 operator appraised of his status while listening for the arrival of the paramedics. She stayed on the phone with me until I heard the sirens outside the house.

When the paramedics arrived in the bedroom, Crow immediately stood up. “I have to go to the bathroom,” he announced, his first words since before the seizure.

I blocked his path and put my hands on his chest. “You have to stay here,” I said. “The paramedics are coming.”

He pushed forward, stronger, and again insisted that he had to go to the bathroom.

The paramedics had reached the room by this time and they were a bunch of big guys. Crow insisted again that he needed to use the restroom so they helped him walk downstairs to the bathroom.

When Crow came out of the bathroom, the paramedics had a bit of a time convincing him to sit on the stretcher. He was kind of belligerent with everyone, which is completely against his nature.

“I know, I know,” he grumbled when one of the paramedics asked him if he could sit down on the stretcher. “I heard you,” he barked, but then he remained standing. They finally managed to convince him to sit down and then lay down on the stretcher. When they started strapping him in, he started to try to sit up and grumbled that he didn’t want to go.

Even though he appeared to be conscious, Crow remembers none of these details of that night. The last thing he remembered was nudging me awake because he felt weird. The next thing he knew, he was being wheeled into an ambulance. I know what this is like, somewhat, as I once got into a bike accident in Colorado where I actually woke up in an ambulance having no immediate recollection of how or why I’d gotten there. Even today, all I remember is hitting a dog that ran across the road, and then waking up in the ambulance. It’s scary as hell to realize something happened to you that you don’t recall at all.

Once again, I found myself in the front seat of an ambulance while my husband — of whose condition I was uncertain — was in the back as a patient. I did feel comforted that he had been conscious when they were wheeling him into the ambulance, but I was frightened because I did not know what was going on in the back. Did he lose consciousness again? Had he had a stroke? Why had he had a seizure?

Unfortunately, the answers to that question were a lot more scary than I could have ever anticipated.

***

Crow spent 5 days in three different Toledo area hospitals. The first was merely an emergency room in Bowling Green where they took a CT scan and made sure he was stabilized. He was then transferred to St. Luke’s for further tests. And then transferred again to Toledo Hospital for additional tests and possible triage if necessary. They ran batteries of tests from infectious disease (a spinal tap) to neurological. We left Toledo with very few answers and some way-t00-far-in-the-future follow up appointments with Akron doctors.

Fortunately, Crow’s PCP was on the ball and got better referrals faster. The primary concern throughout the entire time was the fact CT scans and MRIs presented a 1.3cm – 1.6cm lesion on Crow’s left temperal lobe. It wasn’t necessarily presenting like a big, scary tumor so its pathology mystified most of the doctors. We eventually ended up seeing a neurosurgeon at the Cleveland Clinic, however, who was convinced it was a tumor.

On Christmas Eve, Crow had a biopsy and a procedure called laser ablation in which they “cooked” the visible tumor with a laser to kill it. A little over a week later, the results of the biopsy came back and we found that the tumor was stage iv glioblastoma — a very aggressive form of brain cancer that a mere 200,000 people a year in the US are “lucky” enough to get. Unlike a lot of other cancers, there really is no explanation as to the cause of glioblastoma.

Tomorrow Crow begin 6 weeks / 5 days per week of radiation therapy. He also begins taking a chemotherapy pill (Temodar) daily 7 days a week. The hope is to destroy an unseen microscopic cancer cells that were missed by laser ablation.

It’s not going to be an easy road. Glioblastoma is notorious for recurrence. It’s almost guaranteed. Our lives will now be lived between 3-month MRIs to monitor for tumors. He may still have to take Temodar for five days a month for several months after the radiation regiment as well.

Because he is on seizure watch, Crow cannot drive a car for 6 months to a year (which is tracked from Thanksgiving when he had the seizure). Fortunately, they will allow him to ride a bicycle once he’s fully recovered from surgery (6 weeks out) but he must always do so with other people around in case he has a seizure.

Our lives are altered forever. We’re hopeful right now. I want to believe that maybe he’s just one of those random people who get a cancer and that it never comes back. I try to be realistic too. Either way, I wake up every morning in a panic. I spend the whole day trying to make myself feel more positive. We both feel a little stuck and unable to plan for our future. At the moment, I am also out of work because I have been trying to start my own business since August. Things are tight and the world is less secure than it was in the beginning of November.

So far, I’m not happy with 2016.