Dear John, Week 2
Dear John,
Today marks day 15 on the trip. I’ve already been at this for more than two weeks, and I have fallen into a certain routine that we dreamt about when we thought about becoming full-time RVers. It’s so different from the routine of living in a hospital room. There, we woke up at 4am when the vampire bats swarmed down the hall and into each room to take their blood samples for daily testing. We would drift back to sleep for a bit until the beautiful sunrise greeted us in our penthouse hospital room on the 8th floor. There were many days that the sunrise took our breath away and gave us a treat for having been admitted for so long. Then I would get dressed before the onslaught of doctors came in, I’d try to get you to eat something, and our day would begin.
Our full-time RV life routine is quite different. I usually wake at about 7:00am (I set the alarm for 6:00am on travel days so that I can be on the road by 7:00am). I have had to use the heat for about four mornings so far, so I get that started, make coffee, record my notes and receipts from the day before into my journal, and then I pour over maps and check the itinerary. I can picture you, sitting in your chair, smiling and just looking out the window thinking that you would love to do this forever. So would I. Funny little thing about making money instead of spending it, though.
Today marks the end of your first hospitalization. After 15 days, you were finally allowed to go home. We were scared about all of the pain medications and the new schedule of alarms that appeared on my phone to make sure your daily meds were delivered on time, but we couldn’t wait to go home and hear the birds outside, hear the thunder and rain, and smell the lake air. At the time, we thought this was the worst hospitalization that would ever happen, waiting nine days in excruciating pain while determining a diagnosis. Every day that went by without a cancer diagnosis made me hope that maybe it WASN’T cancer, after all, they said that they had tested you for over 100 different kinds. Then the day came, when that stupid doctor high-fived his resident as they walked in the door (clearly they were talking about something else, but the doctor should have been aware that we were watching every move, every facial expression, every muscle shift. We had been watching for nine days as he walked in that door. High-fiving your resident does not seem very compassionate to me.) The whole time, YOU knew it was cancer. You heard them say “Malignant” in the hallway before they came in I watched YOUR face crumble and lower. I watched your muscles sink deeper into the mattress of the bed as the news literally sunk in. “How long do I have?” you asked. The doctor quickly said that they would do a full body PET Scan to determine if the cancer had spread. You told me later that you knew it had. The next day, the doctor came in and told us, you were right. Again, you asked him, “How long do I have?” and he said that this cancer… angiosarcoma…. and your particular case with a main tumor in the leg and only one lung met with no other spread meant that there were lots of options through continuous treatment. The cancer could be controlled and managed for a long time, but could not be cured. I help hope in those statements, which were given to us again at UW-Madison Cancer Center and again at Mayo Clinic by an expert in sarcoma. But, even though I never acknowledged it, I knew that the answer you heard in your heart that day from the doctor was, “You’re going to die.”
Today, after 15 days, we finally went home. We were home for the longest stretch of time – a little more than a month. During that time you had chemo treatments, and we found CeeCee. I will always blame the trip to get CeeCee on causing you to deteriorate. Friends have told me not to, but the truth is… I can see it in the pictures. Your smiling, happy, strong face as we left town to drive the 7 hours to get her changed to a face of exhaustion, pain, and confusion once we were on our way home. I wonder, if we hadn’t bought her, or if I had gone alone to get her (but we needed you there to sign for the loan) would it have made a difference? My life is filled with so many “what ifs?” I try to bury them deep down so that they hold back the eruption of tears that explode if I allow them to stay.
So I’ll change the subject. I’m good at that. This past week I earned more beads for driving CeeCee through mountain pass after mountain pass after mountain pass. I’m getting used to the twists and turns and the ups and downs. I don’t mind those so much, but the sheer drop-offs and sudden bursts of wind that knock CeeCee off her feet are what make me hold my breath and drink an extra glass of metamucil to calm my stomach.
Two major things happened this week that you would have loved. First, I brought you to Taylorsville, CA where Alicia has lived for two years. This was the whole reason for the trip. One day, in some hospital bed, you looked at me and said, “I’ve decided something.”
“Ok. What is it?” I asked you.“I’ve decided that as soon as the school year is over, we are going to get into CeeCee and you are going to drive me to Alicia. We need to go there. I want to see where she lives.”
I promised you that I would… and I kept that promise. I took a few stops along the way, but the first major destination of this trip was to get you to see Alicia. She lives in a beautiful, kind town. It hardly passes the gallon of milk test (where you sit in your living room, realize you forgot to buy a gallon of milk, and decide that you either live in the perfect place and can run down the road to grab one, or you need to check your gas tank, look at the clock and determine if you can get to the nearest store before it closes or you run out of gas.. Or both). Taylorsville is pretty isolated, but very busy. Everyone knows everyone else. Alicia’s dog, Louie, is a rock-star legend in the community. He plays with the neighbor dogs and anyone who comes to visit within the block.
I got to see where Alicia works. There are surprising similarities between Plumas County, CA and Vilas County, WI where we live. Both are heavily wooded and the air is heavy with the smell of pine most of the time. In Plumas County, there is the addition of the smell of many horses and the view of mountains instead of the smell and view of many lakes. We took a walk around what Alicia calls, “the loop.” It was a flat walk in the valley with mountains all around. There is one mountain ridge that looks like the face of an Indian in full headdress taking a nap, hence the name “Indian Valley.” I brought you here, to the place you would dream of visiting while you laid in a hospital bed. And my timing, completely unplanned, was perfect. I arrived on day 9, the day of your diagnosis, and stayed over what would have been our 27th anniversary. Poor Alicia and Griffin got to see me as an emotional wreck, but I was glad to be with family over that time.
Yesterday, I left. After hours of driving, I finally arrived at the first Redwood’s Visitor Center. We stopped so that I could pick up all of the junk that made you crazy, “Do you REALLY need all of that?” you would say as I grabbed pamphlets of activities that I thought we would be interested in. Then, later.. You would ask me about something that you wanted to do, and of course I would sarcastically say, “I don’t know! Let me find the brochure I picked up about that,” to which you would groan and roll your eyes. Anyway, at the visitor center, the woman gave me some really good tips on things to do with a 32 foot motorhome that is banned from many of the roads in the park. Afterwards, I naively asked her, “Will we get to see many of the big trees on the routes you showed us?” She giggled and said that yes, we would.
I pulled out of the parking lot, and seriously, not fifty feet after the visitor center, the big trees started. They are the biggest trees that I have ever seen in my life, and we were driving amongst them. All three of us kept gawking, pointing, and saying, “Oh my, look at THAT one!” You would have had your face pressed to the windshield, pointing like a toddler the whole time. I arranged a site for the next few days, and we went to the store, picked up some food, and went to the ocean. I never got you to the Pacific Ocean, and after we turtled (a Lohoff term for sitting in a trailer or motorhome along some amazing view and having your entire “home” with you while eating or snacking or napping) we ate supper along the ocean, and went down to the beach. I cried. A lot. You know how much I love an ocean, and this was the first time I was at one without being able to share it with you in some way. And you had never seen this one. My soul hurt. I watched our girls run and dance and play on the beach. I watched them heal, and tried to follow their lead, but my heart was too heavy to be lifted. I sat down on a rock and just smelled the salty ocean air as I could already feel my lips drying from the salt. Of course, I had an ample supply of chapstick, thanks to a friend who supplied me with enough for the trip! I glanced up at CeeCee, parked happily on the edge of the beach, and noticed two men checking out her tramp stamp. A few minutes later they were down on the beach and calling to me, “Where in Wisconsin do you live?” I could hardly deny it was me who owned the WI motorhome as I stood there in my Packers t-shirt! I told him where we lived, and he knew were it was… had been to Minocqua many times as he used to live in Steven’s Point! He was at the Redwoods for his son’s wedding earlier in the day. He now lives in Colorado, but visits family in Wisconsin often. What I’ve learned on this trip, is that talking to people who either notice me or who I share a calling card with and end up chatting to, help me. More than they could ever know. Sharing my story, making connections with people as I move from place to place, will hopefully heal me. I’ll never be fully healed, as you and I both know from understanding what lifetime loss really is all about, but at least I will be better, hopefully. Talking to Fred on the beach forced another little piece of grief to wiggle and break free, leaving my soul. But, there is a mountain of grief still left inside, probably the size of Mt. Shasta, which we passed on the drive to the Redwoods.
This next part of the trip was MY dream. It was on MY bucket list. After we have filled up with seeing giant Redwoods, I will drive slowly along the coast up to Olympic National Park. I will stop and turtle whenever the desire hits me. I will continue to slow down and just let life happen, in a good way for a change. After Olympic Park I will head over to Seattle, for us.
Till next week,
Love you forever,
Your Sweedgie
June 3, 2018
Day 15 of 83
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