Slide Away

I read a science fiction book a long time ago called The Harvest by Robert Charles Wilson. The story was about an advanced alien race who came to Earth offering humanity the chance to embark on a voyage of discovery throughout the universe. Each human is given the individual choice to join the race, a process which involves evolving into something else — something beyond the our limited bodies and much more mentally advanced. The story focuses around a man who said no to the choice and his observations of the disappearing world, including watching his own daughter as she slowly lets go of her humanity. The people who chose to go with the alien race stop engaging with the world over time and eventually just became shells of themselves until they were eventually just released of their bodies.

Crow’s decline from cancer reminded me of this book because that’s what it felt like as I watched him slowly withdraw from the world. Before he even went on hospice, it was a struggle to get him to leave the house. He would want to back out of commitments we made and stay home instead. In May, we went to Chicago to see U2 after I had to persuade go (contrast that with the previous year in which he begged me to take him with me to a Pittsburgh show only I had tickets for). He had fun while we were there, but he could no longer tolerate the noise of a concert and had to leave mid-show during the first of two concerts, even though he was wearing his ear plugs (which dampen concert noise – I use them too). We managed to get out the next day and walk around Chicago, but Crow bowed out of the second show, staying instead at our Air BnB where he, of course, spent his time alone sleeping. The next morning at breakfast, he had to leave the restaurant because even the ambient chatter of the other diners was too much for him. That was our last big trip together.

A few weeks later, I was doing yard work, with which he’d planned to me help me that day. I spent most of the day working alone. Crow tried twice to get up and do something, even something small, but he kept going back in the house. “I’m just too tired,” he’d said. “Man, I just can’t get over how tired I am.”

Sleep became the only thing he wanted to do. When I wasn’t around prodding him — if I went out to something he’d bowed out on — he’d spend his time sleeping. As his periods of sleeping extended, he no longer fought them or complained that he wanted to get up and do something. He just stopped caring about participating in the outside world, it seemed.

I didn’t realize right away how bad it was getting until the week before his last checkup… It suddenly occurred to me as I watched his body shrink that he was no longer getting up in the middle of the day to make himself lunch. I rallied neighbors and friends to drop in on him and bring him lunch. The reports I got back from them indicated that he seemed a bit unstable on his feet and confused. I just hadn’t realized how bad it had gotten because I saw him every day; the changes happen slowly over time and I’d just started to accept each of them as normal.

I guess a part of me kept hoping that somehow he’d get magically cured, even as I became more aware of his decline. His death was something I’d refused to face from the beginning. I didn’t want to confront the widow in me yet again. I was the person who was not being realistic… who kept avoiding talk of death and who refused to look at cemetery plots with him until he came to me on his own with a cemetery already chosen. He knew his death was coming while I just kept thinking I could make it go away by ignoring it.

I never could understand that moment of acceptance. I always pictured myself exiting life kicking and screaming and hanging to life with every last shred of my being. But cancer doesn’t work like that. Cancer takes bits and pieces of you away with each passing day until you have very little left of yourself to hold onto. And, as I observed, the cancer patient reaches a point where they just accept what is happening… and maybe, I don’t know, maybe they see a greater horizon that is out of sight from the living… a place where the pain and suffering has passed. Or maybe they don’t see anything and they just don’t care.

Hospice calls the last stage of care “transitional care.” This term seems to support the idea that we don’t die, we evolve into something else, like the characters in Wilson’s book.

The most isolating thing about a dying person for a caretaker is the slow disconnection with the outside world… I woke up every day, got him cleaned and breakfasted, and then I went straight to working remotely at my job. I felt like I always had one foot in the real world and the other foot in this world of terminal illness. I felt split in two. I struggled — still struggle — to understand how he could just stop being involved.

Food was the last thing Crow let go… Up until the weekend he began “transitioning,” he would make a noise of delight when I placed something he liked in front of him — fruit, chocolate drinks, ice cream. I loved those moments because I felt like we were still connecting and that he was still here in this world. When he stopped eating the food I gave him, it was another sad sign of his slipping away.

I kind of knew he was done when we ice cream stopped making him excited. His disease made it impossible for him to communicate and I often wondered what was going on in his head. Were there things he wished he could tell me when all he could say was reduced to: oh, wow, no, ouch, and yes?

Every step of his disconnect hurt. This man was previously so engaged in the world. When he stopped caring about the simple things, I was just crushed. I couldn’t handle it, like the character in the The Harvest. I don’t know if I’m jealous that he understood and accepted his death or if I’m just angry that he didn’t — couldn’t — fight harder. I feel like we lived in two different worlds in those last months — mine was the world of details, of weeding gardens and mowing lawns and cleaning the house and keeping a job so that I could support us both. His world was of not caring much about any of those details. What did he dream about in his sleep? Did he dream at all? Did he still even care that I was there? Did he care that he was leaving me, or was he ready to go even if going meant he went into oblivion?

I’ll never know. Two people who talked about everything in the world went to becoming almost strangers in the shadow of the cancer cells multiplying themselves in his brain.

How are you doing?

People keep asking me how I’m doing. It’s a very confusing question. On the outside, I look and feel okay. I’m getting by. But on the inside, I’m feeling a dull numbness that is indescribable.

I’m not devastated, though; it’s not at all what it felt like when I lost my first husband, Mike, suddenly to what we learned later was cardiomyopathy. The sad fact about cancer — especially one as aggressive as glioblastoma — is that it gets you used to death. From the moment you or a loved one are diagnosed, you and he are led along on this bread crumb trail of both hope and doom alternatively… There are lots of moments of relief and lots of moments of grief, so that when the end finally comes, you just don’t feel devastated because you already expected it.

In those last 24 hours of Crow’s life, he was suffering so much and looked so outwardly uncomfortable, that the moment he stopped breathing, the emotion I felt was, surprising myself, relief. Which, coming from an agnostic, is really saying something because I don’t really think there is any life beyond this physical one. So feeling relief at the end of Crow’s life made me feel guilty because I was relieved that he had died. But I was relieved that he was no longer suffering because the life he had in those last 24 hours was not life at all. And I was glad it was over. For the both of us.

Over a week later, I’m still relieved. If I need any reminder of why it’s okay to feel relief, I look at a cell phone picture I snapped of him the day before he died. The shadow of the man I loved stares on, mouth slightly agape and dull eyes devoid of emotion, with a washcloth over his head because I was trying to help relieve his end stage fever. The man I mourn is the one with boundless energy who loved to travel and was passionate about working with his hands to create things. He is not the man in the picture.

I had several other points in Crow’s tragic journey with glioblastoma that led to tears and depression like what I experienced in the days after Mike died. I remember each and every one of them because they stand out in my mind as major turning points in my life with Crow.

The first moment was when the CT scan technician at St. Luke’s hospital in Toledo told me that they had found a “lesion” on Crow’s brain following his initial seizure. I knew right then and there that it was cancer. As they gave him some extensive brain pattern testing behind a closed door, I cried a fountain of tears in the hallway. I swore I would find a way to take him to Alaska to see the Northern Lights. I hoped to hell that I was jumping to conclusions, as I often do. That this was a horrible nightmare.

The next moment was when Crow received his diagnosis, two months later, at the Cleveland Clinic, post surgery. I fell to pieces in the longest day of my life in which doctor after doctor came in to overwhelm us with information about how to combat glioblastoma. Our “new normal.” it never felt normal, even when it became a routine.

After that, it was the first brain scan he had after radiation and the first round of chemo (Temodar) in June 2016 when we learned that the tumor had apparently regrown. I was so upset that time that we had to spend an hour at a gas station by I-90 because I was too sick to my stomach to drive. I’d cried so hard that I gave myself a migraine and a panic attack. I couldn’t go to work the next day. I admitted to my then new employer that my husband glioblastoma because instead of working from home that day, I’d spent the rest of the day depressed on the couch.

There were lots of meetings with Crow’s oncologist. Lots of discussions about courses of action. We made decisions, we chose treatment plans. We kept hoping we’d get ahead of this damned thing, at least to buy us some more time together. We even hoped for a few years of remission. But it seemed like every time that Crow tried a new treatment, it worked for one six-week period, only to taunt us with regrowth at the next scan. We lived between MRIs. Our entire happiness in life relied on them. And in between MRIs, we both tried to pretend life was normal, even as certain cognitive skills were slipping away from Crow. We still rode our bikes, we still went on trips; and then we went to MRIs, the result of which either made us feel momentary relief or utter panic. This was how we lived all of 2016 and 2017.

In December 2017, Crow’s oncologist told him that the tumor had appeared to have grown yet again, but, that he’d run through all the standard courses of treatment, and none of them had worked. His doctor suggested he go on hospice at that point…. or try something completely different because, basically, he had nothing left to lose. We were upset that time too, but we consulted other doctors at University Hospital and Ohio State University.

That’s what led us to a second round of radiation and immunotherapy at OSU. His tumor had reset after radiation so we again had promise of a new start. However, it turned out to not be the case. Maybe it was a combination of his long-time Avastin treatment no longer being viable due to some bladder issues he was having, or maybe it’s just that immunotherapy at this stage is just not viable against glioblastoma, but he slowly started declining throughout the early spring. By the time he was ready for his June MRI and chemo appointment, I already knew the result… but that didn’t stop the fountain of tears that spilled from my eyes when the OSU oncologist told us that the tumor had grown significantly and that he, in good conscience, could no longer give Crow treatment. He recommended hospice. And so it went.

So that was the Last Big Cry. The night after that diagnosis and the following morning were just as bad as the day that Crow diagnosed for me. To top it off, on the return to Akron from Columbus, in those few short hours of driving, Crow suddenly couldn’t walk anymore. The whole world had shifted so quickly. A friend was building a wheelchair ramp in our house and I was wheeling Crow to the bathroom every few hours. Then hospice came in and took over and my heart was already broken. Because I knew then that now we were just trying to make Crow comfortable in his final days… and that the final days were coming and I couldn’t think them away anymore.

I spent 10 weeks taking care of Crow every day. I don’t regret one single moment of it. But it wasn’t easy. I had work pressure. Internal pressure. And an undying feeling of restlessness. I couldn’t go anywhere without finding someone to watch Crow. So I learned to just appreciate each hour in my life — in his life — as it happened. I no longer thought about what I might do tomorrow or next week, only on what I could and would do today.

Over this last week, I hate to admit that I feel like someone who just got out of jail. I’m humbled by the fact that I can just go anywhere I want, when I want. I’m no longer bound by a rigid schedule of getting Crow cleaned up in the morning. I don’t have to find someone to watch him so that I can go on a bike ride or shopping. So some of that relief I feel is the fact that I now can go on with my life and do the things I want to do unhindered. It feels crass to say that. I loved Crow and I would not in any way change a single thing that I did for him. I’m so glad he got to die in the home that he loved and worked so hard to make beautiful and ours. I’m glad I was there for him and able to provide him love and comfort throughout what could have only have been a very difficult transition for him as well (he couldn’t communicate more than a few words so I really will never know exactly what his thoughts were). I think the reason he outlived the OSU oncologist’s original prognosis of his remaining time — 2 weeks to a month — was because he was here in a quiet environment surrounded by people (me, his mom for days at a time) who loved and cared about him rather than nurses who did not know him at all. This was how he wanted it. Most of those 10 weeks had moments of beauty that I will remember for the rest of my life. So I don’t regret the decision to keep him at home at all. I’d want him to do the same for me.

I guess I went through the first stages of grief throughout the entire course of his illness and especially in those last 10 weeks. I’m not devastated at the moment, but I am sad. Just because you don’t see tears, and you see me outside partaking in my usual activities, it does not mean I’m not mourning. Right now, it just feels good to go back to my regular routines of going to work every day, fitting in bike rides, planning trips. So I’m focused on that.

I admit that every night I fallen asleep hugging a teddy bear, which we named Allen, that he gave me for Christmas a few years ago. And looking at Crow’s things in the house tugs at my heart so I avoid them.

Will I cry again? Most likely. Hopefully. Crow deserves more tears for the rest of a life he never got to live.

Am I having an existential crisis? Totally. Losing one husband was a tragedy; losing a second while still pretty young is definitely a full-blown crisis. One from which my heart and soul will probably never fully recover.

But am I okay? Yeah, I’m okay.

Will I continue to be okay? Probably.

A dream that died…

https://www.billowfuneralhome.com/m/obituaries/Craig-Wood-3/Memories

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.

 

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.

RAIN: Ride Across INdiana

If there were an award for completing an insane number of miles without any training, I would win it. I always intend to train. Honestly, I do. But it’s been a rough couple of years for my cycling and all my intentions have dissolved in a mix of bad weather and crazy back-to-back vacation planning. Every time that I have participated in Calvin’s Challenge, I have not trained. This past May, I managed to nearly break my previous record (154 miles) at Calvin’s with 147 miles… Not quite the 163 miles for RAIN, but I figured I would have plenty of time, with RAIN being in July, to train…

Ha. Not the case.

Oh well.

So I came into RAIN with the attitude that I would do as many miles as I could manage, and then quit if I felt I just couldn’t complete it. I prepared myself for failure by assuming that I would not finish. But, seriously, who am I kidding? Do I honestly know when to quit a ride? I am the girl who rode 75 miles from Norton to Youngstown on XOBA when my knee was screaming in agony. I am the girl who rode Calvin’s Challenge while battling the end stages of a stomach flu in 2013. Pain does not seem to be a factor in my quitting anything. Or lack of training.

And that is how it came to be that I completed RAIN on July 11, 2015 with my husband, Crow. A mountain biker primarily, Crow becomes easily bored by the long, monotonous miles of a century. I had figured he would end up quitting before me and I would have to make the decision on whether or not I should continue on alone. I completely expected that, in fact. But he too stuck it out until the bitter end, commenting to me that having someone to ride with staves off the boredom.

RAIN follows US-40 from the beautiful campus of Saint Mary-of-the-Woods College in Terre Haute to the tucked-away campus of Earlham College in Richmond, Indiana. Through Indianapolis, however, the route swings through busy suburban neighborhoods to avoid what I assume is heavy downtown traffic along US-40. The grade is generally flat to rolling with no real significant hills… but they feel more significant as the miles go on! As expected from a US highway, the route is mostly filled with traffic and does not offer much by way of scenery. Some would say, “Well, it is Indiana.” But I truly believe every state has beautiful sights to offer somewhere; even the flat Northwest Ohio has beautiful places to see. You don’t get them on this ride, however, because the point is getting from one side of the state to another in one day and so the most direct route is what you ride.

Crow and Mars Girl at the ride start. With miles left to travel.

We embarked on this ride with my friend Sue. Her son, Andrew, and his wife, Lauren, kindly took the time out of their busy lives to drive SAG for us, which meant taking two cars, as Crow and I planned to depart from the finish line while Sue wanted to return to Terre Haute. We were so grateful for their help because that meant we did not have to lug all of our things, like my prescription-strength ibuprofen, sunblock for reapplication, and additional snacks/energy goo. Plus, we had a cooler stocked with cold, fizzy beverages for our enjoyment at the 94 mile lunch stop.

On the way out to the ride, I admit that I took the ibuprofen. Since the spring, and during Calvin’s Challenge, I’ve been battling with an issue in my tailbone. I would feel intense pain any time I stood on my pedals to sprint and when getting on and off my bike. It was so bad that it was nearly tear-inducing. I saw my doctor in May and she did some alignment thing with my spine. It seems like hokey chiropractic voodoo, but she is an actual physician so I trust that whatever she thought my spine needed and did, it was the correct procedure because I’ve felt progressively better since. I’m still dealing with the tailbone when sitting for long periods of time, but I can now get through a long bike ride without issue when previously I’d be in enormous pain after just 10 miles. Still, since this was going to be my longest ride of the year, I wanted to make sure that unnatural pain was the least of my worries so I, as one of my friends joked, “doped up.”

The first 40 miles are the hardest psychologically because that is the longest stretch of the route without rest stops. However, on fresh legs, it hardly makes a difference; I can easily ride 40 miles without a break. The only problem that I had only had a granola bar and yogurt for breakfast so by the time I hit that first rest stop, I was a bit famished. I quickly fixed that problem by gorging on a PopTart, trail mix, and two PBJ sandwiches.

By the 65 mile stop, I was starting to feel some burn. I still wasn’t sure that I would complete the ride. It’s awfully daunting to realize that after 65 miles–which in my better biking days was a casual weekend day ride–I still had 100 miles left to go. I pushed on after the stop because I figured I had nothing better to do and I tried to keep my thoughts on just riding and not necessarily how far I’d ridden. For that reason, I put my bike’s computer on cadence mode so that I would not stare at the mileage ticking slowly away.

I still wasn’t feeling confident at the 94 mile stop but thoughts of quitting did not even enter my mind as I silently chewed my veggie wrap, chips, and some cookies at lunch. All that riding and still having not reached 100 miles was a little demoralizing. However, the next stop was at 115 miles. I knew that once I reached that stop, I would feel a sense of accomplishment which would make the end goal feel more attainable.

Once I reached the 115 mile stop, it was even easier to convince myself to continue on to the next and last stop at 133–just 18 miles. That’s basically the distance of a Tuesday night ride with my bike club. By the time you reach the last stop at 133 miles, it’s even more ridiculous to consider quitting. Sure, 30 miles is a longer ride (on fresh legs, that would normally take me a little over two hours), but it’s a lot shorter than what I’d already done.

Yeah, so I play these psychological games with myself. During that final stretch, my internal mantra was, “I never have to do this bleeping ride again if I finish it today.” It was definitely a lot easier to have a companion on the ride and I was surprised at how both Crow and I managed to keep our spirits up between each other, even though I quietly went through a few periods of grouchiness.

That final stretch certainly seemed the longest as the ride passed through towns that we kept hoping were Richmond, but instead turned out to be false-Richmonds. I could see we were getting closer to civilization. I switched my computer back into mileage mode and, of course, kept noting our distance from the supposed end of the ride at 163 miles. Every time we reached a new false-Richmond, I knew it wasn’t the real Richmond because we still had x miles to go.

We finished at 8:46pm according to the official records maintained by RAIN, ahead of the 9pm cut-off time. My bike computer recorded an actual ride time of about 11 hours and 30 minutes. Of course, with all the breaks we took, the total time was about 13 hours and 46 minutes. A new mileage record for me and Crow! I’m also proud to say that we finished with a 14.6 mph average which is fantastic in my books considering we did not use a pace line. (I hate pace lines.)

We were coming in so fast, you can only see our blurs!

We were really lucky weather-wise. It was only about 85 degrees and the sun was behind a thin sheet of clouds the entire day with only occasional periods of sun. With all the exposure on the US-40 parts of the route, it could have been a lot hotter (the first year Sue did this ride, it was 100 degrees!). There was virtually no wind all day as well so we did not have to contend with a headwind. Thankfully because I have no patience with freaking headwind. Give me a nice hill any day over wind, I say!

I feel that this ride is well-run. All along the route, people cheer you on and tell you that you’re doing a great job, which is a huge help. At the finish line, I received a keychain medal that identifies me as a RAIN “finisher.” Photographers were there to capture the victorious moment. I’m glad I tried the ride. I probably won’t do it again.

Probably.

RAIN 2015 Finisher! Yay!

 

Here are some links to the professional photos that got taken while we rode.

Somewhere near the 40 mile mark:

https://timbike2.smugmug.com/RAIN/2015/Hwy-40-III/i-GSKMMp5/A

My “I’m done and never have to do this again” face:

https://timbike2.smugmug.com/RAIN/2015/Finish-VI/i-K8NrJSS/A

Crow at finish line:

https://timbike2.smugmug.com/RAIN/2015/Finish-VI/i-bBCHp4k/A

The three amigos:

https://timbike2.smugmug.com/RAIN/2015/Finish-VI/i-FWsMHw7/A

You and I Are Rock-And-Roll: Chicago (Part 1)

How Crazy Defeats Frugal

When U2 tickets went on sale way back in December, I ended up purchasing tickets for Chicago 3 and 4 on June 28 and 29th. I couldn’t attend the first two shows on June 24 and June 25 because I was already scheduled to attend a conference for my professional organization from June 21-24.

Or so I thought.

After Vancouver, of course, I started to think about other U2 shows I might attend. Yeah, even though I already had two more lined up in Chicago. For about 4 days, I had tickets to Toronto that a friend had to give up. But I decided that I couldn’t take them after all because between Chicago and Toronto, which are only a week apart, I would need to get some bike rides in because I’m also participating in RAIN (Ride Across Indiana) on July 11th which is 165 miles in one day. We’ve had a rainy start to the summer and I’ve not gotten as much bike riding in as I’d have hoped. In fact, I’m only at about 450 miles at the moment. Ugh.

Anyway, having almost had tickets to two more shows, I had experienced the giddiness of MORE. So I was not about to let it go. I thought about Boston or NYC. I began checking Ticketmaster for ticket drops to those shows. And then it occurred to me… My friend Dave was already going out to Chicago for the first two shows as well as the two I already had tickets to. I was already going to be in Chicago for 3 and 4. Perhaps I could make it up to Chicago for the second show?

As the Chicago shows got closer, I began to check Ticketmaster regularly for ticket drops to the second show. I watched the fan site on FB that advertised tickets that other fans needed to sell. By Tuesday morning, I was very seriously considering a pair of tickets in the 200-level area of the United Center for $375 total. This would be the most money I’d ever spent on U2 tickets, and the first time since 2001 that I was in seats, but I have long decided it’s better to be at the U2 show, in any seat, than not there at all.

Tuesday night I went out to dinner with my friends Kristy and Shawn since I was in town. Upon returning to my hotel room after our visit, I received a text from Kristy, whom I’d just left, stating that another friend was reporting that tickets were dropping for Chicago 2 at that very moment. I immediately tried to pull some tickets on my Ticketmaster app, but only resale tickets were returning in my search results. So I opened my laptop and went to the Ticketmaster site. Sure enough, GA tickets were showing up in the light blue color to indicate that tickets were available from the venue!

I grabbed two tickets, put them in my cart, and then went to check out. When I got to the payment screen, I received an error message that stated that the tickets in my cart were no longer available! I tried again, was able to grab two tickets in my cart, but again, I received the same message at the payment screen. Undaunted, I went back to main screen, but this time I drew one ticket. I figured I could go back and get the second ticket after I’d secured the first. This time I was able to purchase the ticket. I felt a rush of relief mixed with fear and regret as I watched the payment go through. Now I was definitely going to the U2 concert two days away and I was going to need to ask for a second day off from work!

I immediately went back into Ticketmaster to try to draw another ticket for Crow… But, alas, the GA area was now displaying as gray, indicating that there were no tickets available. I spent another half hour trying to search for GA tickets doing a general search for tickets, but I kept getting nosebleeds on the resale site.

Well, I thought, it’s easy to find one ticket at the venue from someone. Half the battle is getting to the venue. I felt confident that I would be able to secure a ticket for Crow.

Too Much is Not Enough: Chicago 2 (June 25, 2015)

I returned from the conference, unpacked my conference clothes, and immediately repacked my bag for Chicago. Meanwhile, Crow went on a bike ride with our bike club. I was too jittery to ride. According to the mapping app on my phone, it would take about 6 hours to get to where we were staying in Chicago. Knowing the mapping app is much more conservative than my driving, I figured it would actually take about 5 hours so long as I didn’t hit Chicago traffic (I mean, c’mon, the speed limit on the turnpike is 70 all the way through Ohio and Indiana!).

I planned to leave for Chicago at 7am. So, of course, we ended up leaving at 9am. I figured we’d arrive in Chicago around 3pm which was enough time to get settled in at the hotel, grab dinner, and get to the venue without feeling rushed. Dave, meanwhile, was working on a trade for a ticket for Crow. Our friends, Kristy and Shawn, had originally bought tickets to several of the Chicago shows and then were unable to attend. They gave Dave their tickets to try to use so they would not go to waste. Therefore, Dave had a spare GA ticket for Chicago 3 that he could trade with someone who had one for Chicago 2.

The entire drive to Chicago, I fretted about not making it to Chicago in time or hitting traffic. We stopped at rest areas twice and I made the stops as brief as possible. This behavior is typical for me during travel to a U2 show; I’m always afraid that some unforeseen problem will occur to prevent me from getting to the show. I have nightmares about this, too. I never feel 100% secure until I’m in the venue waiting for the show to start. As I drove to Chicago, I was determined that I only had to get to the city and everything would be okay.

I was also very nervous about driving in Chicago because Crow had indicated that it could be as bad as New York City. I never, ever want to drive in New York City. I was imagining all kinds of terribly nerve-wrecking scenarios once we got into Chicago. Fortunately, at around 3pm on a Thursday afternoon, the highways were really not that bad at all–not much busier than Cleveland on a weekday–so I felt more confident as we got closer. The hotel was easy to find and located just off the Magnificent Mile, so within walking distance of great food, shopping, and parks.

We met up with Dave, our roommate for the next five days, and he assured us that he was pretty sure he’d secured a ticket for Crow. Yay! We found food at this great little pub not far from the hotel called Rudy’s. I relaxed some over beer.

Since Dave had been to Chicago 1 the night before, he’d already worked out how we would get to the venue using the “L”–Chicago’s part subway, part elevated train system–and we arrived, stress-free, at the venue around 6pm. We had to wait around on the grounds for the guy with whom we were trading tickets as the venue let in the entire GA line. He was taking his own sweet time meeting up with us and I started to get nervous because if the guy didn’t show, Crow would have no ticket. This is where the fan in me conflicts with the love of my husband–Do I just go in without him? Or do I sacrifice my own ticket to make sure Crow isn’t by himself in Chicago? I’m sure if worse came to worse, Crow would just have told me to go into the show without him, and I would have, but I would have felt really bad about leaving him behind.

Fortunately, I didn’t have to make “Sophie’s choice” (I’m being funny there), and the guy arrived. Dave wished us well as he was headed to the entrance for people with tickets in seats. We calmly walked through security, submitted to the scans by medal detector, and we were admitted. I always hold my breath during the credit card scan, fearing it won’t work, but everything went smoothly. We picked the South side of the floor since we could choose and I’d not been to that side of the show. (In Vancouver, your ticket dictated which side you were on and I got North both times.)

I had originally planned to just hang back on the edge of the floor so that Crow could see the screens. People were already lined up by the Red Zone rail. The Red Zone at a U2 show is a secured ticket area for people who have bought high-priced GA tickets–a portion of the money goes to (RED)–and for this show they are on the far end of the main stage on each side. I started standing in the second row from the Red Zone rail, but when I returned from a quick restroom break, Crow had already  moved a little more center of floor between the Red Zone and the catwalk. Ultimately, we ended up about five rows back from the main stage and about 2-3 rows from the start of the catwalk. This ended up being my favorite place to stand of all the places I stood on this tour.

So once in place, I really felt that relief I get right before a show starts. I’d made it to one extra show! I was so excited. I also was excited for Crow to see my favorite band and hoped it would help him to understand why I have such a great love for U2 that I follow them to multiple shows on a tour.

Outside the United Center in Chicago before the show.

The tour has changed slightly since I saw the band in Vancouver. Nothing huge, but some great subtle changes that have served to make the show tighter and more cohesive. I’m a little depressed that the special remix of The Ramones’ “Beat On the Brat” has been replaced as the song that plays before the band arrives on stage. It set that early 1980s vibe for me before the show and when U2 came on, “The Miracle (Of Joey Ramone)” just kind of flowed into it. Now the song that U2 comes out to is Patti Smith’s “People Have The Power”–a great song, and one I love, but it just doesn’t seem to fit as well at that point in the show.

Mars Girl and Crow at the U2 show. I’m decked out in my u2start.com Everything I Lost shirt and my homemade U2 earrings. You can’t see it, but my shirt reads: “Everything I ever lost, now has been returned in the most beautiful sound I ever heard.” (Lyrics to “The Miracle (Of Joey Ramone)” by U2)

One of the best changes, though, is that now Bono starts the show from the e-stage while the rest of the band starts playing at the main stage. I am not even sure how the band entered in Vancouver, as both nights I was far from the main stage, but it seemed rather abrupt and without ceremony. Now, however, Bono walks onto the e-stage and starts riling up the crowd by encouraging them to chant the opening oooh-ohh-ohh’s to the song. He swaggers and struts and flails his arms in encouragement and the crowd really seems to respond. (Also noted: Chicago crowds are way louder and more active than the Vancouver crowds were.)

The first four songs of the night are always a vicious flurry of upbeat rock-n-roll tunes. Chicago 2 opened with “The Miracle,” “Out of Control,” “Vertigo,” and “I Will Follow” and the songs just kind of caught me up and took me along with them. Sometime during this powerful beginning set, I was baptized by Bono as he flung the water from his water bottle upon the audience. A few droplets landed on me and I was totally thrilled. It’s funny because, as another U2 friend of mine pointed out, if some guy in the crowd had sprayed me with water, I’d have been totally pissed; however, Bono flinging water on me is perfectly okay.

A not-so-clear shot of Bono on the catwalk.

U2 on the main stage during the first set.

Mr. Adam Clayton–the suave, photogenic member of U2.

We had lots of time with Mr. Clayton. Be thankful I excluded the gratuitous butt shot from this blog entry.

The Edge! We were on his side of the main stage.

The first half of the show was not much different from what I’d seen in Vancouver, but I still felt as though I were hearing it the first time. I’d kept my listening to bootlegs and live shows on Periscope to a minimum between Vancouver and Chicago to ensure I wouldn’t have the show memorized when I saw it again. Regardless, nothing beats the feeling of being in the arena, hearing U2 play the songs live.

The big surprise of the night was during the e-stage set. Bono said, “After the grief comes the anger…” And as soon as he said that, I thought, Shit! They are going to play “Volcano!” Sure enough, that familiar bass line kicked in, and I went crazy. “Volcano” is my favorite song on Songs of Innocence; in fact, “Volcano” climbed to the number 1 slot in my iTunes’ 25 Most Played Songs playlist just two months after the album was released in September. The song currently has over 300 plays and defeats The Twilight Singers’ “Dynamite Steps,” which is the theme song I use for my novel (so it has had a ton of play itself). This was only the third time “Volcano” was played on the tour and it was the one song I walked away from Vancouver wishing they had played.

Bono with Adam in the background and the cool effect of viewing the same scene through other people’s cell phones.

Bono reportedly was recovering from a case of bronchitis, but his voice seemed to be top notch all night. I only noticed that he had a cold when he was speaking–his voice sounded a little hoarse and stuffed. I honestly don’t know how he could still sing if he was sick, but he did not miss a note all night. I held my breath nervously in every song that had high notes and/or parts where he holds a note for long, and–to my relief–he managed to get through everything without a mistake.

Another highlight of night was “Bad,” which I also got to hear the second night in Vancouver. It seems this song is making a semi-regular appearance on this tour and, as I always tell people, any concert in which “Bad” is performed is a great night. It was definitely the icing on the cake for me as I love everything on The Unforgettable Fire.

Bono inviting the audience to sing. (I know these are not the clearest shots in the world.)

Great in-the-moment shot of The Edge.

Adam in the encore.

More blurry Bono.

Bono yet again.

For the very last song, Bono led everyone in a singalong of “One.” Usually I get annoyed when the band doesn’t actually sing one of our songs, but this night, it just seemed to fit in with the whole experience of being there. I kind of wondered if Bono’s voice was finally tired after a night of pushing it. He seemed pleased to hear the crowd singing the verses to his song at him. He would join us for a line or two, urging us to continue, and the audience responded without missing a beat.

This was definitely a night I didn’t want the concert to end. I felt a bit bummed when the band exited for their final time and the lights came up in the arena. But, alas, I knew I would be attending two more shows in two days’ time.

Adventure to be continued in the next blog entry…

The World Is Spinning Fast Tonight: U2 in Vancouver

It has been four years since I saw U2’s final show on the 360 Tour in Moncton, New Brunswick, Canada. Ever since they dropped their new album, Songs of Innocence, on iTunes last October, and buzz of them touring began to overtake the fan community, I was determined that I would see them on the very first show of their tour. Where ever it was. I guess I was fairly certain they would start in North America. Thankfully because I don’t think I could have swung a trip to Europe or any other international location at this time. I have had a financially draining last four years with a wedding and home purchase.

I really wanted to be at the first show on the tour because I would be the first to see what was to come. I would have no idea what they were going to play (other than the obvious, songs from their new album). The whole mystery around what was going to happen excited me. Social media and the internet has spoiled concert-going in a way. With the organized fan community that U2 has, you can virtually be present at any show around the world. On the last U2 tour, people at shows tweeted setlists real-time. Now with such apps as Meerkat and Periscope, fans can live stream shows. Friends of mine going to shows later in the tour have to put themselves on a media blackout to not find out too much information about the show if they prefer the element of surprise. It’s very hard to avoid all those concert details. And because of this, I kind of miss the pre-internet days.

Yet, at the same time, I love the accessibility of music and art that the internet provides. There are U2 sites that contain a huge archive of U2 bootlegs, collected from shows going back to the early 1980s. Before I even left Vancouver, bootlegs from both nights were already available. At the time of this writing, there are bootlegs for all four of the U2 shows that have taken place thus far in the infancy of this tour. In this day and age, I can leave a U2 concert with 80% confidence that I will be able to forever listen to the show via some recording. This is priceless.

Still. I have no willpower. So I knew that if my only shows were later in the tour, despite all of my attempts to avoid peeking at the videos, setlists, and bootlegs out there, I would fail miserably. So I freed myself from recoiling at the information overload by getting tickets to the very first show on the tour. Problem solved.

I cannot even convey the excitement I felt leading up to this concert. Despite the controversial release of U2’s latest album, I really love Songs of Innocence. I think more people would, too, had they given the album a chance before angrily deleting it from their iPods. (People don’t want free music?? I’d even give Jack White a chance if he gave me a free album and I hate him). As I stated in a post about the album, Songs of Innocence is perhaps one of the most honest and heartfelt albums U2 has done since October. There is some sonic exploration in the album and you can definitely hear the influence of some of its producers. I could not wait to hear these new songs live. When U2 plays their own songs live, they outperform the album versions such that after you’ve heard the song live, that’s the only way you want to hear it again. The mark of any good band is one who can kick the ass of their own songs when they play them live. U2 does this 100x over. Always. This is why we fans are so obsessive-compulsive about attending as many of their concerts as we can reasonably afford…

I didn’t get to hear many of the rehearsed songs while I was in Vancouver because the outside of Rogers arena is probably the noisiest place I’ve ever been. There is a constant ambient noise of traffic at all hours of the day and night. So even though I spent hours waiting to meet the band while they rehearsed, I only vaguely heard music a few times. I did, however, listen to one recording on youtube of them playing “Raised By Wolves” that someone recorded outside of Pacific Coliseum where they practiced weeks before the concert and from that clip I decided that despite bicycle accident injuries and painkillers, Bono was definitely ready to perform.

We did not do the normal GA line up. When we were casing Rogers arena for possible entry/exit points for the band on Monday, we noticed that a GA line had already formed–4 days before the first show!! We conferred for a few minutes on the sidewalk across the street from them and decided that Monday was way too early to line up for GA. We were kind of disgusted because it seems like the line up for GA was starting earlier and earlier at the end of the last tour… and here it was starting up all over again. Granted, the rules were that you didn’t actually have to stay in the line from Monday on, you just had to check in twice a day. But even that seemed like too much. Really? Check in to some line-master? Ehhh…

We decided to line up at 1pm on the day of the first show. It turned out to be a good choice because even at that point there were no more than 150 people or so (possibly less). Okay, for most more casual fans, lining up 5 hours before the doors open is probably still extreme (I believe my husband’s exact quote was, “Have fun with that.”). But it’s actually not that bad. Time flies by because you are amongst others who also love the band as much as you do and you can share your excitement and anticipation of the show.

There was some worry about the ticketing process for GA because it was for the first time ever paperless. You had to scan the credit card you used to pay for the show. I was in a panic because for one of the shows I bought tickets to (Chicago 3), I had used another credit card. So I brought both credit cards to each show, even though I had double and triple checked which credit card I used for which show before I even left Ohio. Anyway, it turned out to be a pretty painless process: They scanned your card, the machine spits out a receipt (yay, souvenir!), and then you walk with the receipt to a table where they then put a wristband on you that matches the side of the arena from which you’re supposed to enter.

The paperless ticket receipt.

For this tour, U2’s stage goes across the whole floor, dividing the arena floor into a North and South side. Because this show is primarily about the band’s early days, the arena floor is divided in this way to represent the north and south sides of Dublin (the band grew up on the north side). A catwalk runs down the middle of the floor with a main stage at one end and a smaller b-stage in the shape of an “e” (for experience) at the other.

Both nights, we ended up on the North side. Other fans said they were able to move between sides during the shows but I don’t know how that happened as the second night we were at the back of the b-stage and security kept the access closed off throughout the show. Yeah, it was only roped off. My guess is that some people snuck through.

On the first night, there was a lot of confusion. The people who had been the front of the line had mostly already filled up the entire length of rail space (which is quite vast) on the north side. We originally had some rail on the b-stage, but then we jumped up to the main stage to see what it was like up there, thought about staying, and then decided to leave to go back to the b-stage. We ran into some friends midway along the catwalk rail and decided to stay there. We were second row from the rail, our friends who had also arrived at 1pm with us had the rail.

It was really a toss-up because we had no idea what the show was going to be like to even know where a “good” spot was. So we just decided to hold our position and see what happened. It took the arena a long time to fill after that. Probably because most people arrive closer to the time the show is supposed to start (7:30) and aren’t freaks like us who want to vie for a close spot to the band.

The pre-show music was outstanding. It was a lot of 1980s music that I assume inspired the band–Patti Smith (!!), Ramones, Talking Heads, Joy Division, even a Flock of Seagulls! The music really helped to transport me back to that time. The last song played before the band came on was “Beat On The Brat” by the Ramones. I’m not a fan of The Ramones, and only know in a minimal pop culture sort of way, but I do know this song because U2 has done a cover of it. The version they play at this point in the show is a modified remix that includes riffs from U2’s songs “Even Better Than The Real Thing” and “Discotheque.”

Panorama of the crowd at Rogers Arena.

Like U2 had expressed, I was a little nervous to hear how the songs from the new album would be received. But my fears immediately vanished as soon as the opening “oh oh”‘s from “The Miracle (Of Joey Ramone)” began and I heard the arena fill with the sound of thousands of fans singing along (myself included).

The band started from the main stage. I was a little disappointed, though, that from my position the rail, I really could not see much of the action on the main stage. The first four songs were sung from there and Bono started to walk out to the catwalk some during “Iris” (5 songs in).

I tried to not let it bother me/disappoint me that I couldn’t see. I knew that I was by a rail and eventually the band would start walking down our way. The band started out strong with some incredible songs old and new–“Out of Control” (a favorite of mine), “Vertigo,” and “I Will Follow.” Incidentally, the slot “Out of Control” filled now seems, after 6 shows, to a position for an array of songs from the band’s first two albums. Though nothing has yet been played from October, U2’s second album, I hold out hope that “Gloria” might get slipped in there at some point (hopefully when I’m at the show). Since then, the band has played “Electric Co” in this spot.

The Edge on the catwalk in front of us during the encore.

Though I had cheated and looked at the 60-some songs U2 had reportedly practiced during their rehearsals before the tour, I completely forgot about “Iris (Hold Me Close.” This is a beautiful song written about Bono’s mother, Iris, who died when he was fourteen. There are some beautiful lines in this song and I have to say that I never thought that Bono would perform it live because of its emotional content. So when the first few notes to the song started, I squealed with delight. He snippeted “Mofo”–a song from U2’s Pop album which was also about Bono’s mom–at the beginning. All I could do throughout this entire performance was hold my hand over my heart. So stunningly beautiful. At the end of the song, Bono prompted the audience to chant “Free yourself to be yourself / If only you can see.”

After “Iris,” a large metal screen with a walkway between each side descended to just above the catwalk. Bono invited the audience to visit Cedarwood Road with him and then he climbs up a ladder into the screen and the band plays the song “Cedarwood Road.” From my point of view just beneath the catwalk, I could only see Bono’s feet as he walked along the pathway in the screen. However, between videos I caught later, and the second night, everyone in the audience besides the rail rats see a cartoon representation of houses and rooms as Bono walks along them. It’s actually pretty cool and I’m sure if you’re up in nosebleeds it gives you a sense of closeness to the band as though you were on the floor.

I thought that I wouldn’t mind if U2 stopped playing “Sunday Bloody Sunday” for a tour… Until Larry Mullen Jr. came out to the catwalk and began pounding a vicious military-style beat on a snare drum that he carried. This reworked acoustic version of “Sunday Bloody Sunday” made the song fresh again for my ears. It was beautiful and eerie and set to a part of the show that playacted a car bombing that happened during Bono’s youth. From our position on the catwalk, we were right next to Larry and the drum beats were loud and jarring and completely impressive in how they set the mood as the video of a newscaster talking of the car bombing played. A final hit of the drum at the end before the fade into “Raised By Wolves” was just amazing.

 

Larry Mullen Jr is a machine.

 

The second half of the show was largely on the b-stage, to which I had a great view. U2 played some songs I’ve never had the pleasure of hearing live–“Sweetest Thing” and “Desire”–and then played an acoustic version of “Every Breaking Wave.” Without prompting, the audience began to shine their cell phone lights and the arena became a beautiful twinkling sea of stars.

“Every Breaking Wave” performed on night 2. (I didn’t get a clear shot on night 1.)

The Edge plays the piano in “Every Breaking Wave.”

Bono, Adam, and Larry play at the b-stage.

The main set ended with “The Troubles” (which at the time of this writing is the only song this new song has been played) and “With or Without You.” The encore was a rousing four-punch hit of “City of Blinding Lights,” “Beautiful Day,” “Where The Streets Have No Name,” and “I Still Haven’t Found What I’m Looking For.” I find “Still Haven’t Found” kind of a weird song to end on, but they have been doing it the first night in every city on this tour so far, it seems.

Light effect in encore.

I did do a lot of jumping around throughout the show and all those bodies together made me very sweaty and parched by the end. It was great, though, and my first reaction was that I needed some time to process what had happened.

Sweaty Mars Girl after night 1.

For the second show, we ended up at the back of the b-stage which gave us a great view up the entire catwalk to the main stage. I could see all the action a lot better, including a sideways view of the video screen to catch some of the things I’d missed the first night.

Mars Girl, Kristy, and Shawn on night 2 of U2 in Vancouver.

Our view from the b-stage.

Right away, I could feel the energy of the crowd for the second night was even better than the first. Before the show even began, someone in the seats started the wave and it lasted about 10 minutes before fizzling out. In general, I felt like the band were more relaxed this second day than the first and throughout the show there was a lot more smiling going on between them. In the first set, the played “California (There Is No End To Love).”

Bono in an emotional ending to “Raised By Wolves” in which he utters Psalm 23.

On the b-stage, they performed “When Love Comes To Town” as a tribute to B. B. King who had passed away the previous night. And in the vein of Rattle And Hum favorites, “Angel of Harlem” made an appearance as well. The encore blew me away with first “Miracle Drug”–my favorite song from How To Dismantle an Atomic Bomb–followed by “Bad.” They ended the encore with “One,” which seemed a bit more fitting a song to end the show on.

I thought I was blown away the first night, but second night was even better. I left Rogers with the realization that I heard all but three songs from the new album (no “Volcano,” my favorite, waaaaah!). The new songs really shine on this tour and I have to say that they have already blown the album version so far out of the water that now I pretty much just want to listen to the live versions provided by the bootlegs.

A fan’s sign joking on The Edge’s epic fall on night 1. (Which we didn’t know about until later.)

Knowing the second night what would happen at the show was really not a problem. Even the narrative parts that are apparently in the show for good (or at least for a long run) invoked an emotional response for me. I’m trying now not to listen to the bootlegs so much in fear that when I see them in Chicago in June that my ears might be a little too used to the sound. I’m failing miserably… There is also an off-chance that I might also go to Toronto… Uh… If I can swing it. I try to remind myself that U2 is supposed to take the show outside to stadiums in 2016 and that I can continue to see them then… But this addiction is just so overwhelming. I just want to stand there in the audience, witnessing this greatness that is U2, and never come down from the high of that moment. These concerts remind me of why I’m such a huge fan: This band is unique, one-of-the-kind, and they give everything into their performances. You leave feeling as though you embarked on a journey with them… And you totally have.

Mr. Adam Clayton