Goodbye 2017; Don’t Let the Door Hit You in the Ass On the Way Out

Warning: This entry is a bit of a rant. And by saying “a bit,” I am putting it nicely. Very nicely. I’m sorry, John, I know that this is breaking the rules of the blog that we set up together,  but I know that you agree with how I feel, and that you agree with the overall crappiness of this year! If you, as a reader, can’t handle everything that I’ve put in here, then all I can say to you is… we lived it!

2017 can suck it! Goodbye! Good riddance! Don’t let the door hit you in the ass on your way out! You and I got off on the wrong foot, and things only continued to get worse each day until now, this last day of 2017….. when I officially say GOODBYE TO YOU! (This is where you begin to hear the 1982 Scandal hit by the same name in your head. What, you don’t remember it? You are too young to remember it?)

Well lucky for you I’ve added the youtube link for the music video in order for you to relive those fond memories, or be further educated on the musicality of the 80’s. Ok.. moving on.

Basically, if you break the year down by months, there was major trauma and drama (the rhyme is intentional) for each month. I only wish that I could put it to music and get a hit song out of it. It would make an award-winning, sad country song. So here it goes…. my official letting go of 2017 through a month by month recap: If you watch the TV show “The Goldbergs,” which was one of John’s favorite shows, you will understand that the insult of calling someone a moron is not as harsh as it may seem, although for many of the people I dealt with this past year in the medical field, it was warranted.

January:

John slipped on the ice and got a major concussion. We were yelled at when we returned to the ER a week later because he was still throwing up. “This is post – concussion syndrome, haven’t you ever dealt with that?” we were asked.  Um, no! They also told us that there was nothing that they could do about the pain in John’s right leg. There was nothing wrong with it. They had looked at the x-rays from December. (HA. HA. HA). Morons. (I warned you, this is breaking ALL of the rules John made me promise this blog would be about, but I’m sorry…. it has to be said.)

February:

Another ER visit, this time with Kady who ended up having bronchitis.

Meanwhile, John worked hard every week at PT to get rid of the muscle issue they told him was in his right leg. The Physical Therapist cancelled the MRI of John’s knee that the orthopedic surgeon scheduled because the PT was convinced the problem was in John’s hip and back. So the MRI was done of the hips and back. It showed some narrowing of the spine, but nothing that could explain the pain that John was feeling. More morons. I will forever wonder if catching the tumors in the leg a few months earlier would have made things better for John or not.

March:

My cousin, who was also my godmother, died from cancer. She was in her 60’s. I went to visit her a week before she died and I’m grateful that I had that opportunity, even though she was too weak to speak with me for more than a few minutes.

We had to cancel our travel plans for Spring Break because John’s leg was hurting too much and he couldn’t handle the long trip. The doctor’s did finally clear him to travel to Chicago for my cousin’s funeral.

April:

On April 1st we went to Sharon’s funeral, then on the 9th we celebrated John’s birthday.

I made him his favorite meal of rouladen, and Anna made his birthday cake, a buttercreme torte that was his mother’s recipe. She has made it for him for years and years. The next day, a storm knocked out our power, for three days, with temperatures below freezing. Thank goodness we had a gas fireplace to keep us warm, and cooking in the gas oven also kept the temperatures liveable in the house.

Each person was given one gallon of water a day to use for flushing the toilet. Then, a week later, after the power returned, the oven ignitor broke.

By the end of April, John’s pain was so bad that I had driven him to three different ER’s (all of which refused to treat him or even LOOK at his leg – morons). Having run out of options, someone suggested that I take him to the urgent care in Marshfield, WI. Going into that visit, we had been told that John had cervical stenosis which must have been causing the pain in his leg. It was unusual, and his pain was more severe than they would have expected, but that was the diagnosis… UNTIL….

We came home from that urgent care appointment with an x-ray diagnosing him with cancer. His pain was so bad that he slept for 2 minutes or less at a time. We waited several more days for April 27th, when he had a follow-up appointment with an oncologist.

The oncologist told us that it wasn’t the kind of cancer that they originally thought, and seeing John’s pain, she immediately admitted him. Thus began our 83 days of living in a hospital. He was admitted, and we waited for 10 days until the diagnosis came. But that happened in May, and I don’t want to get ahead of myself.

May:

After high-fiving his resident outside of our hospital room, (yes, this really happened, we were sure that they were talking about something else, but really?- morons) the hospital oncologist came in to tell us that John had stage 4 angiosarcoma. Our knees shook and our stomachs felt sick. John remained in so much pain that we took 20 minute shifts where either I or one of my older daughters would rub his leg to ease the pain. The second person would supervise the little girls, and the third person would get a 20 minute break. We rotated these jobs every 20 minutes for three days. Pretty much around the clock.

Then we regrouped and I immediately started researching, but what I learned about his cancer wasn’t great information, it was pretty dismal. Still, John had gone through chemo once before with little difficulty and good results. We were sure it would happen again. He was discharged and we went to UW-Madison for our second opinion which was a repeat of what the first oncology team had told us, and then we went home.

While we were in the hospital, my cousin’s boyfriend of many years died from cancer. We weren’t able to make it to the funeral and I was heartbroken that I couldn’t be there for her. Finally, our neighbor died from cancer while John was in the hospital. And by neighbor I don’t mean someone in the neighborhood, I mean our actual neighbor, the person next door.

June: 

Chemo treatments and a trip to buy CeeCee our motorhome several hours away were easy compared to the never ending thunderstorms that hit us and took the power away each time.Each storm knocked out the power for several hours. Thank goodness John’s chairlift was battery operated so he could at least get upstairs and downstairs when he wanted to. Our internet seemed to be a target for each storm, and I spent countless hours on the phone with them trying to reestablish service after every power outage.  During the last storm, we had a direct hit to the house. Our internet (again), printer, DirecTV box and garage door were fried. I had to schedule repairs multiple times between doctor appointments. The garage door and printer are still broken. Also, another neighbor died from cancer. This neighbor lived across the street. No, I’m NOT making this up!

To lighten things up a bit, John learned how to knit so that he would be able to go to the Wisconsin Sheep and Wool Festival in September and be one of those cool guys… knitting away (his words, not mine). He surprised himself by actually being able to knit fairly well!

At the end of the month, John was re-admitted to the hospital with neutropenic fever.

July:

That hospital visit lasted several days, and he was finally discharged on Kady’s birthday.She woke up on her birthday in a hotel room with no gifts or cake. Luckily, the hotel manager had bought her some cupcakes and gave her a card with money in it and another guest sang a family birthday song for her. Before picking up John at the hospital, I went and bought her several balloons to make her feel special as we walked the hallways of the hospital. Tests had found a blood clot in John’s leg, and his blood thinners were increased.

Three days later, John was back in the hospital, this time with internal bleeding in the leg with the cancer tumors, caused by the increase in blood thinners. This was when John suffered his first “heart episode”……

and then his second. Fourth of July was spent overlooking the cemetery located directly across the street from the hospital (how uplifting) and in one 24 hour period, John  was forced to change hospital rooms five times. Morons.

A few days later, after they told us that the pathology tests from UW-Madison reported that John’s cancer was a different type of sarcoma, he was  transferred by ambulance to Mayo hospital in Rochester, MN for a surgical consultation. The orthopedic oncologist in Marshfield had retired a few weeks before John’s first hospital stay, and no one had replaced him.

We were so happy to be in Mayo, as I had tried to get a consultation appointment established, but because John was so rarely out of the hospital, we never had the chance to get there. He stayed in Mayo for about a week and they did a lung biopsy on the met in his lung. Sadly, right before discharging him, the hospital oncology team came in to tell us that the new pathology reports confirmed the initial diagnosis of angiosarcoma. They knew that we had been happy to have a different diagnosis, but the lung nodule result was clear. It WAS angiosarcoma. On the way out of our room, the hospital oncologist told her colleague, “That’s how you deliver bad news. You just say it.” MORON!

During this three day visit at home, John’s legs gave out as he was trying to stand and go to bed. He melted to the floor. It was 10:00 pm. We tried to help him for quite awhile and finally had to call 911. They were wonderful and got him up, watched him use the chairlift to get upstairs, and helped him get settled into bed.  The next day we made the trip back to Mayo for what was supposed to be a clinic visit, but he ended up needing the ER and again, he was admitted. And then there was the third heart episode. This one was more serious, and a heart catheterization surprised even the cardiologist by showing an old area of 100% blockage in a main artery that the heart had rerouted on it’s own, but it also showed triple vessel disease. They treated it with medication and tabled any further medical treatments until he became stronger.

August:

August was a huge month! Basically, we lived in CeeCee, our motorhome, for four weeks while John went through radiation, and we fought for him to get accepted into the rehab program at Mayo (the physical rehab, not the other kind). We managed to get John a few day passes where he was allowed to leave the hospital or the rehab unit, and we would drive around town, go out to eat as a family,

and he learned how to climb into CeeCee so that he could go camping, the thing we both loved. On Aug, 21st,  I raced John outside between therapy appointments so that he could see the solar eclipse. “Wow,” he said, “that’s amazing!” It was a moment that I will treasure forever. He had a 10 minute window between sessions that managed to JUST line up with the latter half of the eclipse.

Earlier in the month, Alena broke her fingers at the YMCA day camp and needed a surgical reallignment. Alicia, my oldest daughter, dropped us off at one Mayo hospital for the procedure, while she then went to the other hospital to be with John. I took Alena in for the surgery and afterwards I wheeled her to the shuttle bus, helped her

aboard as she was feeling dizzy, helped her off of the bus at the other hospital and into another wheelchair, and brought her to John’s room. There I sat, one patient sleeping on the couch and the other one in the bed.

John’s port, that had been placed in May, was found to be misalligned in July but they didn’t do anything about it during that hospital stay (Morons) so we remained in Rochester, MN for  a few extra days after he completed the rehab program so that Mayo could replace the port that was described in Mayo’s July x-ray as being out of position. The sarcoma expert from Mayo then gave us the best news when he told us that the radiation had done it’s job and that John was eligible for all chemo treatments, and that there were a lot of options to give him longevity. We left for home and I went back to work.

September:

After one dose of the new chemo, regimen John developed another fever and ended up in the hospital for several days, again.

This time he was in our hometown, which made things easier but also frustrating as they refused to communicate with his oncology team (Morons). He came home once again and started acting like typical old John. On Sept.16th he was pain free, had no confusion, and the little girls were gone for the day. We laid around all day talking..  He then asked me, “What the hell happened this summer?” I told him everything. Most of it he hadn’t remembered, and he felt just awful for what he had put us through. “It doesn’t matter,” I told him, ” we are HERE now, and this new treatment is going to make things better.” Boy, was I wrong.

After going on a few picnics, a few day trips in the camper, and celebrating Alena’s birthday, John had his final dose of chemo on September 22nd. A few days later he wasn’t able to eat, he couldn’t get up on his own, and he couldn’t follow basic directions. He wasn’t able to go to the bathroom by himself, or even leave his bed. Somehow Anna and I managed to get him back to the hospital in Marshfield, WI, two hours away. The chemo that he had been given had a less than 1% chance of causing brain toxicity, and, true to his determination to not follow any medical expectations, John developed major brain toxicity from the chemo. The oncologist, who we loved, said that he would be fine.

October:

On October 5th, an hour after we were told that the recent scans of John’s chest showed that the chemo had killed the cancer tumor, John was wheeled out for a liver ultrasound. There was nothing serious, they just wanted to tweak his medications because the numbers were a bit off. He never returned from that test. He had another heart episode and an hour later, he was gone. Unexpectedly. The oncologist came back to sit with me, shocked by what had just happened. That ended 83 days of us living in a hospitals. There’s nothing more to say about that month. It was the worst thing imaginable.

November:

In an attempt to find some kind of joy in our lives, I took my girls bowling for an afternoon and we loaded up on games, music, food, and drink. When I went to pay the bill, my card was denied. Someone had stolen John’s identity and our account was drained by $5,000 – 6,000. The bank was already working on it by the time I called them, but it took a month to resolve.

In another attempt to find joy and keep a promise that I had made to John, we took a trip in CeeCee to

Tennessee over Thanksgiving break. Afterwards, we spent Thanksgiving at an aunt and uncle’s house. Then we went home and Alena began scratching her head. Really hard. For a long time. Somewhere, before we left on the trip, she had caught lice, and now I spent a late night doing treatments. I prayed… please let December bring NOTHING……No chaos! Please!

December:

Well, as is usual for me, those prayers were not answered. Another reason that I do not pray. Early in December, I was invited to be an adult and go out with a friend to Minneapolis for 24 hours. During that time,

Kady developed a fever of 103.5, and Anna took her to the ER. I sat at dinner, enjoying a meal while also feeding Anna the information that the ER doctors would need to know through text messages. It turned out that Kady had influenza A and B. That would be it for the month, right?

Wrong. Alicia drove home from California to be with us for Christmas. Her car is less than 4 years old, and it broke down near Minneapolis late on a Friday afternoon. The roadside assistance company,

who had recently assured me that Alicia would be covered under my plan if needed, refused to tow her. I called them, while sitting with Anna who was now in urgent care being diagnosed with bronchitis, and fought for them to reconsider (which they did after I basically told them this year’s story) Meanwhile, Alicia limped the car for 30 miles to the only garage who agreed to help her, IF she could get there before they closed. She made it with 5 minutes to spare. They scrambled to find her a part and she made it home that night. So, that’s it for drama and trauma, right?

Wrong again. The final event (at least I hope it’s the final event…. at the time I write this there ARE still a few hours left in which some type of chaos could rear it’s ugly head…. see update below), came on Christmas Eve Eve, again late at night (I hate nights). I thought the water heater broke because there was 2 inches of water in the basement. I couldn’t deal with it, I just crawled into bed and denied this reality. Finally, after a plumber friend talked me through a few steps, and after plunging the basement drain to see if the water would finally go down, it was determined that the water heater wasn’t the problem. I propped the furnace drainpipe into a bucket and emptied it every few hours for a few days until after Christmas, when the plumber could come. After a few days, and retesting  the drain, everything started working normally again, and no one really knows why, but I’ll take it.

UPDATE 12/31/17:So, after writing this draft and going to bed, I was woken at 12:00 am to find out that, once again, Alicia’s car was causing problems. She had stopped in Nevada to go to the bathroom and noticed that her back tires were low. She drove to a nearby diesel mechanic who told her that one of the tires was about to blow. He put her spare tire on and told her to drive carefully to Reno, two hours away, without going over 55 mph. At 2:00 am she called me again so that I could give my credit card information over the phone at the hotel she was staying at. She was only a little more than an hour from her home. Right now, we are working to get the tire changed so that she can finally get home.

So, that is the story of my 2017. Again, John, I’m sorry for breaking the rules and posting something so negative. I know this post is not “John Lohoff approved,” but I also needed to get this year recorded so I could slam the door in it’s face and crawl on skinned knees into a new year.

Finally, many people have, with good intention, tried to give me perspective by saying, “You know there are people out there who have it worse than you do,” To that I now have learned a response which I’m anxious to practice…

Kiss my ass, 2017! Goodbye to you! To you I give the F-Bomb, the middle finger, voodoo dolls, and curses.

I’m sorry, was that too much? Have I crossed a line here? Too bad. 2017 brings the end of 10 years of chaos, caregiving, and major health problems for the ones I love. I hope.

I’m hoping that  2018 can bring healing… something that John and I had been trying to do when 2017 started.

If you, or someone you care about is dealing with grief, here are some tips for coping with grief from people who are dealing with it themselves!