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They say “when men make plans, God laughs”. Fortunately, they also say “laughter is the best medicine”. I’m not sure who “they” are, but let’s hope they’re right.
And so begins the story of David Clawson’s 2017 Christmas journey, not quite the drive to Bend, Oregon, snowshoeing in the mountains, drinking craft brews and watching Star Wars that he had planned.
On December 3rd, Dave and Suzanne went out and got their Christmas tree, and spent the day decorating. That evening he started feeling tired, and was having a bit of trouble breathing. Monday he went to urgent care, where they diagnosed possible bronchitis, and sent him home with an inhaler.
By Tuesday evening he was having more trouble breathing, and was unable to lean back against anything due to pain in his upper back, so he couldn’t sleep. He took advantage of this time to power through MindHunter, but decided to go back to urgent care on Wednesday. At this point the roller coaster started up the hill…
Based on his symptoms, urgent care referred him to the emergency room, and Suzanne took him to Legacy Emanuel Hospital. Through a series of tests, they discovered significant fluid around his lungs, as well as around is heart. He was admitted to the CVICU that evening, with a plan to monitor him and do additional testing the following day. (Laughter – Dave and Suzanne were supposed to go to a special Christmas Trivia Night that evening…)
On the plus side, he was in a beautiful, huge room with a view of the city, and personalized care from some of the nicest nurses and staff one could hope for. But he was still in the hospital, and he still couldn’t lie down, so he still couldn’t sleep. AND, to make matters worse, he couldn’t eat or drink anything because of the tests they were going to run the next day. He was amazingly not really cranky, and such a good patient that the nurses kept commenting on it, and asking if they could bring him anything (except food and beverage, which is all he wanted). Dave’s mom, Kris, stayed with him the first night. (Note to anyone who ever has to stay in a hospital room, either patient or visitor – take a heavy blanket! I’m pretty sure they are trying to freeze out the germs.)
Thursday (it’s really not even been a full day??) Dave had an MRI, and they continued to monitor him. He was really a conundrum – he didn’t have any cold or flu symptoms, hadn’t had a fever, no rapid weight loss, no injury, no history of anything, and ultimately his vital signs were good. He was asked the same questions by every doctor who came into contact with him – similar to the game “20 Questions”. Our favorite was “Have you been in an old cabin with bats recently?” They finally performed a Thoracentesis, also known as a pleural tap, and drained a liter of fluid from the right side. For a visual, think about a liter of Coke or Pepsi – YIKES! Dave was SO HAPPY! He could breathe, he could lean back, he could go to sleep, and best of all – he could EAT! Actually, the best of all was the sleeping – he actually slept through the first meal they brought him, but ate it cold because he was so hungry! He was really almost his usual self, except for the whole hospital gown/bed thing, and they wouldn’t let him walk around. But he could eat anything he wanted, and was excited about the room service menu until the food actually arrived…it was dressed up to SOUND like something yummy, but as Dave so eloquently put it “it’s like they bring you the demon version of all your favorite foods.”
By Friday, they decided it wasn’t his heart, but they still didn’t know what was wrong. They needed the room in ICU, so they moved him to the PCCU floor. They were testing the fluid from his lungs, but it was taking quite a while. This room wasn’t quite as big (about a third of the size of the ICU room), but you could see Mt. Hood from the window, and he had more freedom – he could walk to the bathroom, and take shower, and wear his own pajamas! They took another liter plus of fluid out of his chest, and he was feeling pretty good. However, they also started talking about preliminary findings from the tests, and it appeared to be T-Cell non-Hodgkin’s Lymphoma. The roller coaster went over the top and did a straight shot down….
One the plus side, Dave’s dad, Jim, and stepmom, Debbie came to town for a visit. (Laughter – the visit was pre-planned with the idea of doing Portland Christmas things with Dave, Suzanne, Kris & Jack, drinking so craft beers and eating some good food….)
Saturday, December 9th, was another day of waiting, although in the morning it seemed that he might get to go home and would check in at OHSU the following week. However, they were still waiting on the tests and concerned about the fluid returning to his lungs. By late afternoon the doctor decided that he didn’t want Dave to go home, but go directly to OHSU’s Knight Cancer Research Center. He felt that it was critical that Dave be admitted and start treatment as soon as possible. He did concede to allow Suzanne to drive him, so Dave got to pretend everything was sort of normal for half an hour…
If you’ve never been to OHSU, it is a giant hospital on top of one of the biggest hills in Portland. There is actually an air tram that goes up to it, although you have to pay, and it’s kind of freaky when the wind is blowing, and it only runs until 9:30, and not at all on Sunday. Driving up there is super special – the two-lane road twists and turns up the mountain, with a maximum speed limit of 20 MPH, and it feels like that is too fast. Good news, Dave is in the first building you get to at the end of the road, and parking is free.
Dave’s current room is super nice – the building is new, the equipment is new, it’s a nice size. BUT…everyone on the floor has a very serious illness, so visitors have to wash their hands for one minute, sign in stating that they have not symptoms of any illness, and wear a mask (and a sticker with the day of the week on it…) Apparently the same cooks work at this hospital as well, but he can have food brought in from the outside, which is a plus.
Sunday was uneventful unless you are a Seahawks fan. No doctors visited, no tests were done. Jim and Debbie went home. Dave was still maintaining his upbeat “Dave” attitude, although he was starting to have trouble leaning back again. The roller coaster is starting up another hill…
Monday, 12/11, a PET scan was scheduled which helps the doctors get a better idea of where the Lymphoma is and the stage. Unfortunately, Dave’s back was hurting too much for him to lie down for 20 minutes. In the interest of reducing the chance of infection, the doctor’s chose not to tap the fluid again, and gave him a diuretic. He didn’t get a lot of sleep.
Tuesday, 12/12 more tests were run. They did a bone marrow biopsy, which Dave bravely said wasn’t super comfortable, but wasn’t the worst thing in the world either (he didn’t see the needle…), and were able to do the PET scan. (They did try to take the fluid out, but Dave passed out after a pint because they hadn’t fed him for 13 hours…).
Late Tuesday evening Dave was told they were going to start chemo treatment. This was a little shocking, since there still hasn’t been a full diagnosis of exactly WHAT they are treating. When asked, the nurse explained that while she doesn’t know what percent they are sure this is lymphoma, all signs indicate it is something in that vein, and treatment would be necessary regardless. And so it has begun…and the roller coaster has gone straight down the hill again.
It appears that the treatment plan is an 11-day cycle every month for 6-8 months, depending on how Dave responds. We’ve done the math and have our fingers crossed that they will let him go home for Christmas, but there are no guarantees. Right now, he’s feeling fine except for the fluid buildup, which should go away soon, and the lack of sleep.
We are taking things day by day. We know he is in good hands at OHSU and with the T-Cell Lymphoma specialist at the Knight Cancer Research Center. All the information we have been receiving is positive – this cancer responds well to this treatment, people recover and go into remission, Dave has youth and good health on his side. He also has a super positive attitude, which is a critical component of treatment.
This site has been set up to provide ongoing updates about Dave’s progress and road to recovery and remission. He will be posting to it as he feels up to it and we welcome questions, well wishes, prayers, daily inspirations - anything to support Dave! He is well enough for visitors (except no kids under 12 or anyone who has the cold or flu). He is being treated on the Bone Marrow Transplant floor 14 of the Kohler Pavilion.
The love and support we have received from friends and family over the last week has meant more than you'll ever know. Thank you to those who have visited, been a shoulder to cry on, given warm hugs, played rounds of scrabble, lent books and iPads, baked cookies, sent cards and brought holiday cheer. He’s got this.