It all started in late August of 2017... let's sum up. Karen was diagnosed with stage 4 ovarian cancer, a six hour surgery lasted thirteen hours and she spent the better part of a year trying not to die. it was miserable. Since then, two more courses of chemo, various cancer related setbacks, and still lots of grit and fight. Ups and Downs.
Along the way, with a thousand other things we talked about, we discussed Bucket List things. Prior to cancer, we had talked about going to Hawaii for our 15th wedding anniversary. That came around in 2018 when we were pretty deep in cancer recovery, chemo, and other crappy things. So we decided to push it out and maybe do it on our twentieth. That will roll around in 2023.
Then, the weekend after Thanksgiving 2020, Karen had trouble with balance and vision and nausea, and we took her in to get checked over because...weird. At first they briefly considered stroke, but a CT scan showed a brain tumor instead. The ovarian cancer had done the incredibly rare thing of jumping the brain blood barrier and growing a little grapey sized nugget of tumor in her left cerebral padunkle, that part of the brain that controls coordination and body functions and in general is very important. She had gamma knife surgery to attack the tumor in early December and has been doing Physical Therapy (PT) since.
All of this to say that this new event got us to talking about bucket lists again. My list is huge, of course, because I want to do ALL THE THINGS. My brain is scattered and easily distracted that way.
Karen on the other hand has always had a very short list. She has said (and I agree) that we have led a life blessed with opportunities to check things off of the bucket lists that sometimes we didn't even know were on the list! Travel, experiences, foods, all sorts of things. She ran a B&B, has travelled abroad, spent a month in Rome, and we've had many, many amazing adventures domestically as well. Freezing while winter camping in the Black Hills, exploring the Florida Keys, LOTS of Disney World magic...
But the one thing that has remained at the top of her list (really the only thing ON the list) is to see Hawaii. It's on my list too, but for almost entirely different reasons. I'm a water guy. I'd rather be in water than on land and live for interacting with critters in the H2O. Karen is not a fan of critters in water coming to greet her. She has no desire to submerge herself past her neck in liquid. So in talking about going to Hawaii - a group of islands completely surrounded by a huge ocean that is famous for water based activities- I was surprised it was on her list.
But she wants to connect with the island, the land itself. To see the tropical jungles, feel the warm air on her skin, hear the sounds. She wants to just be in Hawaii.
Well, around the time of the surgery, we decided to get serious and see if Hawaii would be something we could make happen sooner rather than later. We were both aware that this new development in her cancer journey wasn't going to do any favors for her life expectancy, and if we were going to see Hawaii, it would be better while she's able to independently enjoy it. In other words (not to be depressing) we felt the need to go in case her condition worsens in the future and makes the trip impossible.
So, planning started in earnest. Thanks to covid, school has been shut down, so I haven't been bus driving. But that looked set to change in mid to late January. Thanks to brain surgery, Karen was off work until about the same time. If there was a good time to go, it would be before we went back to work! (Big Lemons call for Big Lemonade) Karen - as she is wont to do - spent most of the planning days feeling guilty about going to Hawaii while on medical leave. She feels that unless she's actively dying, she could work, and she doesn't like leaving her work team short handed. (To the point of since her diagnosis feeling guilty any time she misses work for chemo treatments, or hospital stays, or trips to the ER, or even for surgeries. I've had to talk her into ER trips in the past that she wants to wait on because of work. I'm telling you, she is devoted to her job and the people she works with at an insane level!) I argued that resting and recuperating is less demanding than work, so the two cannot really be compared. Also, Hawaii has been the go to location for recuperating military personnel for multiple wars, and there would be no better place for PT. Beaches could provide uneven walking surfaces to practice balance. Hiking to see waterfalls, lighthouses, or just jungle flora and fauna would provide excellent stamina building opportunities. Lots of hydrotherapy opportunities, even in pools away from critters! The food would be nutritious. And the whole reason for medical leave is to REST and HEAL and be prepared to get back to work at as near to 100% as possible! She said she didn't think her collogues would approve of her taking a trip with the last week or so of her medical leave, and she didn't want to "abuse the system". My argument? If roles were reversed, and one of her co-workers had chronic and probably terminal cancer that had spread to her brain and wanted to go on a trip to complete a bucket list item - the ONLY item on said list - and they had the opportunity to do so at the end of a medical leave where they had the time off anyway, would she grumble and be mad at said co-worker for going? She might be a little jealous that they were going on an adventure, but she'd also be the one that would pass a card around and gather up some money to wish them a great trip! I have no doubt her co-workers would feel the same about her going to Hawaii.
After surgery, she was scheduled for lots of PT to relearn to walk, work on her coordination, relearn self cares, and all that fun stuff that goes along with post brain trauma care. Giving serious consideration to a Hawaii trip increased her already intense motivation to improve during her PT sessions. She was a PT animal! Sessions started to have Hawaii themes. How to get up and down on a beach. Working on stairs in case they're encountered on hikes. Stamina training for the same thing. She put in lots of hard work every time.
We are Disney Vacation Club members (thanks to my wife and her sister who are Disney fanatics) and we were able to book an entire week at their resort on Oahu with the points we had, which we otherwise could have NEVER done at $450/night. (Thanks past Karen and Sarah for talking me into joining DVC!) My amazing mother in law gifted us the airline tickets, and we'd been saving up to do some stuff to the house next spring and summer, so we had some funds to do some "touristy" things once there. So we booked a socially distanced luau with a group that changed their usual style of open buffet dining and groups doing cultural experiences to distanced tables with separate waiters and families doing the cultural things apart from others, with masks and six feet regs in place as well. We booked an outrigger canoe paddle out to some small private islands that would be the four of us and a couple guides. And we booked a snorkel adventure with wild spinner dolphins and sea turtles adventure that would be just us and staff as well. (With Karen staying on the boat and watching us do the snorkeling while chilling with a cold drink and enjoying the ocean air) All the rest of our time was going to be based around Karen. Things we could see together dependent on her energy levels, avoiding crowds, and staying flexible. Short hikes to waterfalls and a lighthouse on paved "trails". Island drives seeking out the best food trucks. The Dole plantation (and Dole Whips). The Byodo-In temple. Botanical gardens. With random stops at many beaches for lounging, resting, and getting some snorkel time in for me and the kids. Or just resting at Aulani and enjoying the offerings there. It was shaping up to be a week with lots of chill time. Just what the doctor ordered. A therapy vacation.
With the pandemic raging, we did hours and hours of research about travel. Hawaii has hoops to jump through to keep their islands safe, and we navigated all of those in our planning as well. Covid tests had to be negative 72 hours before our last flight leg to the state, and registered with the travel authority online, and we had to fill out a health survey 24 hours prior as well. I checked multiple sites to keep track of numbers and trends every day, ready to cancel everything if needed. I cancelled a couple of things that could have higher risks. We went back and forth on whether to even go with covid in the forefront. But it always came back to completing Karen's Bucket Wish List in a timely manner. Under any other circumstances, we'd wait until after the pandemic. Wait until that 2023 twenty year anniversary. But we're both realists. The odds aren't in our favor for that. We'd take every precaution, jump through every hoop, stay well isolated while there. But the risks, while high, were acceptable for the reward.
Christmas gifts revolved around the trip, with snorkel sets for the kids and me, and beach wraps and island wear for K. Karen went from barely being able to get around with a walker at PT, to cruising around unassisted and impressing her delightfully helpful therapist, Rachel. We knew that hiking Diamondhead wasn't going to be on the list, but it was looking like the shorter, paved trail hikes would be doable! We decided to take the walker along for those so she'd have a seat to rest in wherever we went as well.
By the night of January 2, 2021, we were pretty well packed and ready to get to the airport in the Twin Cities for our 6 am flight to Phoenix, where we'd catch a connecting flight to Honolulu. After not sleeping due to excitement, we locked up the house and got to the airport with plenty of time to spare. Karen had seemed tired, but then all the activity of the day and night before had worn us all out a bit, and we also did a poor job of eating regular food. She swore she was ok though. I dropped her and the kids off at the American Airline door with the luggage and went to park. When I rejoined them we were met with short-ish, confusing lines, but the nice AA lady was directing us to the self check in kiosks to print out our luggage tags since we had checked in online the night before. When I finally got to a kiosk (it took longer than I had expected because everyone seemed to be needing the assistance of said nice lady to complete the self check in)(and she was the only employee out there for the twenty or so kiosks) I entered our data until the machine told me that I too would need assistance from the attendant. It took her so long to work her way to us that the machine had booted us and we had to start over again. After a few minutes of trying, she was having problems as well. When she discovered we were going to Hawaii, she said we'd need to go to the main counter for assistance. So. Back in line we went. Two attendants were manning those desks, and I got a little twinge that this was taking too long. When we finally got to the desk, it was eight minutes until boarding began for our flight. The lady at the desk said it wouldn't be a problem, we still had plenty of time. By this time, Karen had been up and down from the walker numerous times and I could tell that she was out of energy. We asked about getting a wheelchair to expedite our journey to the gate, so she ordered one, and proceeded to get our bags tagged and boarding passes printed. She directed us to some out of the way seats and told us it would be a couple minutes until the wheelchair assist arrived.
After waiting twenty minutes and all of us getting more and more nervous about missing the flight, Karen decided that she had enough energy to get through security. We just couldn't wait any longer. So we got in line. I had asked several airport employees how long wheelchairs took prior to our getting in line, and as we waited, one of them tracked us down and said they had a golf cart waiting for us just past security to get us to the gate. Karen was so worn out that I ended up pushing her while she sat on the walker through the rest of the security line. By the time the security guy checking ID's finally waved us through, I thought it would take a miracle for us to make the flight. As we loaded Karen onto the cart, the driver told us not to worry because he worked at the gate and was holding the flight for us. He raced through the airport, (but Luke had to run along side since there wasn't room for everyone on the cart) and we got to the gate just in time to see the guy who actually worked there close the door on the walkway. He was not holding the flight for us.
We had missed the flight.
I'll admit that I was a little hot under the collar, and the AA gate attendant called over his manager. I wasn't yelling, but was obviously pissed and I'm guessing he was calling back up to handle me. She said she was sorry, but there was nothing they could do since we were late. I - trying not to yell, but definitely using my perturbed voice - told her that we wouldn't have been late if they perhaps had more than three people checking the hundred plus people in and we hadn't waited twenty minutes for a wheelchair that never arrived. Fortunately, the time of the chair request had been documented AND the lady checking us in had overridden their cutoff times to get our bags on the flight which she shouldn't have done, so the manager quickly realized that this was on them and not us. At that point, they both went into overdrive to help us! The best they could do was get us on a flight the next day and give us a hotel room for the night (and all day Sunday) Meanwhile, I had taken a few deep breaths, calmed myself down, and apologized for being brusque, explaining that we were on a mission to get Karen to Hawaii to complete her bucket list. And while we were all disappointed, the kids were taking it in stride. There were a few tired tears, but we remained upbeat and in our Que sera sera mode. In talking about the trip over the few weeks since we decided to actually do it, all four of us talked about the importance of being flexible and taking each day as it came and making sure that no matter what happened, we'd make an adventure of it and have what fun we could. So we talked about what to do at the hotel for the day for fun. Maybe go to the Mall of America. Maybe just sleep and watch movies. We asked them if we could get a wheelchair or the cart again to get us back to the front door, and eventually the same driver and a couple other guys arrived. Looking at Karen, I knew she needed to sleep.
I got her into the wheelchair and one of the guys walked off with her. I thanked the two AA workers and the kids and I grabbed the walker and our carry on bags and loaded up onto the cart. Karen and her "driver" were way down the hallway, and as we approached them, I noticed Karen dragging her foot along the ground and seeming to watch it like a little kid. My mind tagged it as weird. Just a little red flag popping up. Then as we passed the chair, I called out to her.
"You ok honey?"
She did not respond.
"Karen?"
Nothing.
I went into paramedic mode and jumped from the moving cart and ran back to her. The guy pushing her was saying "She's fine. She's fine."
I pulled her mask down as I gently raised her chin from her chest. Her eyes were blank and vacant. There was a little drool coming from her slack mouth. Her breathing was very shallow, fast, and erratic. I grabbed her wrist and couldn't find a pulse.
"SHE IS NOT FINE!" I barked at the startled attendant. "CALL THE PARAMEDICS NOW!"
I instinctively went for a brachial pulse and didn't get anything there either. I had a terrifying flash of thinking that I'd need to get her to the floor and start CPR. In front of our children. I yelled at the driver to call for medics. He looked at the wheelchair guy and they both shrugged as if wondering how to go about doing that. Their third co-worker was coming down the hall so after angrily yelling at the first two with a "F-ING CALL 911! THIS SHOULDN'T BE THAT HARD!!" I yelled at the other guy to get on his f-ing radio and get medics on their way. He shrugged too. I wanted to tear their heads from their bodies, but needed to tend to Karen. I looked back at the driver and he was pointing to a phone on the wall telling me I could call from there. I could call... or I could start CPR on my wife...and I looked at my kids.
They were startled, but calm. I told Luke to call 911 and he leapt from the cart to the phone. I could hear him talking to the operator while I was assessing Karen.
This all happened in the first maybe twenty to thirty seconds, but it seemed like forever. She was grunting a little and trying to talk, and I got a pulse on her neck so decided not to pull her from the chair. Lifting her head seemed to help her breathing, although it was still fast, shallow and shitty. It seemed to take forever, but she began to come around. By the time the airport police got there ten hours later (probably a few minutes) she was talking a little, and by the time the medics arrived three weeks later (maybe ten minutes) she was able to answer their questions. I told them my findings and mentioned that I had been a medic once in the hopes it would make any difference. Their exam and tests confirmed it. Her pulse was 40 over nothing and they wanted to transport, which I wholeheartedly agreed with.
While all that was happening, the AA manager lady called to tell me that her manager had authorized us to get on the Delta flight going direct to Honolulu. I thanked her and told her what was happening, and she and her manager came to us. They were adorable. It was 7:30 or 8 am, and the Delta flight wasn't until 10:45, so if the medics cleared her maybe we could make the flight. I mentioned that we probably weren't going to Hawaii, but they insisted we keep our next day reservations "just in case". I knew we weren't going, but they were wonderfully optimistic and said they'd do whatever they could to get us to Hawaii. As Karen was taken off by the medics, they and the police made a point to tell me how impressed with our kids they were. As was I.
They didn't panic. They didn't freak out. Luke did a great job communicating with 911. Anna helped EMS find her Mom's meds in the carry on and they both comforted each other by asking each other if they were ok. You never know how people will react in an emergency. Fight, Flight, Freeze. But they really stepped up. We talked through things back at the hotel later that day. I wanted to see how they were doing. They both agreed that nobody should cross me when I'm in emergency mode. I asked them if I seemed panicked, but they only saw me as taking charge and "being paramedicy". I'm glad for that, because I felt pretty panicky! But I was very, very proud of them. They took care of each other. They stayed quiet and calm throughout and I couldn't be more proud of how they responded to an emergent crisis.
Sunday was a blur of being in the ER with K as they got her stabilized. Sepsis. Some pneumonia. Trying to get her blood pressure up and using "lots and lots of meds" to do it. And a CT that showed that the tumor near her kidney ureter that we've been watching for over a year had pinched the ureter shut. When she was taken up to the ICU, I went back to the hotel with the kids and started making phone calls, texts, and e-mails, to cancel the trip. Everyone was great, and if they couldn't give full refunds, they gave us credit to rebook sometime in 2021. It took a cornucopia of things lining up to get this trip arranged, and we as of yet don't know how recovery will go for Karen, but we are determined to get started on the Great Hawaiian Therapy Trip, Attempt Deux very soon.
One thing we have been adamant about through all of this is not just telling the kids to be flexible, but demonstrating that as well. Our family motto has become "Semper Gumby, Baby" Always Flexible. And this has been a definite test of that. But we are determined, and we are driven, and we don't give up easy, especially when adventure is at hand!
We're ignoring the negatives of these past few days and focusing on the positive. When we are able to go again, the Polynesian Cultural Center will be open again, as well as a few other things that looked really fun but were covid closed. I don't know if we can stay as long at Disney's Aulani, but there are other hotels, and maybe we can still get in a solid week (or more?) on Oahu. Karen has more time to PT and prep for adventure, and I have more time to learn some more of the Hawaiian language and get swimming again so I can be ready to live in the water when possible.
And yes, we are very aware that missing the plane was a blessing in disguise. It's possible that she would have crumped on the way to Phoenix, or worse, somewhere over the Pacific. And the lesson is that along with 72 hour covid tests and 24 hour health questionnaires from the state of Hawaii, we'll do some tests on Karen to make sure she's medically ready as well. Maybe a blood check to see how her numbers are. Whatever it takes. (And definitely a hotel near the airport the night before and even more extra time for check in... or maybe camping at the airport to be at the gate an hour or two before boarding begins...)
So. that's the whole long story of the past few weeks and days. We don't know what the future holds. But none of us are guaranteed a tomorrow. We're going to chase those dreams and overcome obstacles if at all possible.
Semper Gumby, Baby.
