I keep replaying the timeline over and over again. It's all so vivid and such a blur all at the same time. I find the need to recount it, much like a birth story.
In late August 2019, my right shoulder began to cause me pain. I remember that I'd lost enough mobility in it that I had a hard time shaking a guest's hand at an event we hosted. I chalked it up to straining it while riding a Solex with Han, Zack, & Isabel on a beautiful day on the Dutch island of Texel.
After returning home from my summer in Holland I went into see my primary doctor in hopes of getting some pain relief. She affirmed that it was most likely a tear or strain and the only thing to do was to wait it out and let it heal on its own. I saw a chiropractor and had a couple massages until I returned to Holland for the month of January where Han had arranged for four physical therapist appointments for me. They also thought it was a "frozen shoulder" and reassured me that it wasn't uncommon for it to take over a year to heal. They did try their best to work with me but were surprised at the lack of improvement in my range of motion. I was a very challenging case for them, which in hindsight should've been a big clue.
When I returned home, I kept trying to ignore the pain which seemed to fluctuate in its intensity. Finally, it got bad enough that I thought I'd better go in and at least beg for a cortisone shot to help me wait it out. I have a high deductible so hated to go in at all--especially if there was nothing they could do.
March 9th: Right as the whole Corona Virus was hitting the news and Washington State, I went in and met with Dr. Jordan Chun, a sport's medicine specialist. Little did I know he would turn out to be my guardian angel. He was instantly bothered by my lack of range of motion. He suspected it was a worse tear than I knew and that I'd need surgery to see a real improvement. I told him I was leaving for Holland on the 30th, so had a limited window of time. We had a fun time talking about my life there and he was all for getting things going quickly. He managed to get me in for an MRI just a few days later (which was remarkable and only due to the fact that thanks to the virus most procedures were being cancelled).
March 12th: MRI. I almost cancelled. Worried it would show nothing and that I was going to have to pay so much of my deductible just to be told that only time would heal.
March 15th: I had just gotten into my car when I got the call from Dr. Chun that will forever be frozen in my memory. They'd found a mass. It wasn't a matter of if it was bad. It was just a matter of how bad. I shook as I walked back into the house and told my mom. And as I called Han. And all four of the kids. It felt surreal and terrifying.
March 23rd: The governor ordered an unprecedented state wide "stay at home" order due to the Corona Virus.
March 24th: Met with an Orthopedic Oncologist who went over my MRI results with me. Action felt so much better than the days of purely waiting.
March 27th: Went in for Bone Scan and CT Scan on the same day. Had to drink a contrast solution for both. Ended up vomiting on the bone scan technician. It was a bit much all at once!
March 29th: The Universe called in back up at this point and Zack arrived to stay with us en route to start a new chapter of his life in San Francisco. We thought it would just be for a couple weeks. Ha. The timing felt miraculous.
March 30th: So painful to me to not be on that airplane to Holland after counting the days since I left in January.
April 2nd: Zack drove me into Seattle for a biopsy. They took 4 samples in two locations (my shoulder and lymph nodes in my chest). It felt like what you think of when they talk about fracking the earth.
April 4th: Got a phone call with my diagnosis: Diffuse Large B cell Lymphoma. The oncologist said that if I had to have cancer it was the best kind of cancer to have and one that is highly responsive to chemotherapy. They needed to do more tests to figure out what stage it was and what exactly my treatment would be. He was very reassuring but the fact that it was confirmed as cancer felt almost impossible to put my mind around.
April 7th: Blood tests and an Electrocardiogram to test my heart strength. Sat there in the hospital for an hour before they realized no one was working who could do my electrocardiogram. Had to return the next morning. This at a time when they were advising people not to go to the grocery store unnecessarily!
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| I had the whole waiting room to myself! |
April 8th: Back to the hospital (Kaiser) in Bellevue for the electrocardiogram in the morning...followed by returning to Kaiser in Seattle, in the afternoon, to have a port put in. Like all my other appointments, no one could go in with me due to the virus. Zack drove me and waited in the car. This was my first ever surgical procedure and I felt like an alien in a foreign cold world: alone, naked, raw, vulnerable...trusting people I'd never met in basement of fluorescent lights and hard machinery.
April 9th: PETscan. I was most nervous for this test. What would it find? But, I knew I needed it behind me so that I could begin treatment which I was so anxious to get going. Went in and the (really awful) receptionist said I wasn't on the schedule. They had made an error🤯. I managed to stay calm but we had to go home and return a couple hours later when they were able to get me in. My 5th time in the hospital in 3 days. In the middle of the pandemic. In the end, I was just relieved that they got me in the same day. But, still.
I got a call that evening from the oncologist who said that the scan was mostly clear but one lymph node had lit up in my tummy area. Due to this, they concluded that I was at a Stage IV. But he reassured me that Stage IV Lymphoma isn't as bad as it sounds and that I had every reason to believe that it would be cured. The treatment plan would be 6 sessions of chemotherapy spaced out every three weeks. 6 isn't such a high number. Maybe it would be doable? Felt so relieved that it hadn't spread more than that, that it overrode my fear.
An hour later he called back and said they did see a spot on my breast and wanted me to go in the next day for a mammogram/ultrasound. This was one of my worst fears as I was behind in my mammograms and if they found something there, I knew I would feel like it was all my fault.
April 10th: Returned to hospital for the 6th time that week and the mammogram technician took real pity on me with my fresh port wound on one side and biopsy wounds on the other. She had the uneviable job of squishing my breasts into pancakes on that archaic machine. She said they wouldn't do an ultrasound unless they had to. They had to. I was so scared and sure that it was going to be bad news. Especially, as she got the tape measure out and measured an area that was showing up. The good news was that the radiologist was onsite and he would let me know before I left. He came in and reported that he was not concerned. There were some dense tissue there that are not uncommon and nothing to worry about. This is the first time I cried at any of the appointments.
April 13th: Zack was able to join me for the first time for my "chemo teach" appointment to learn about what to expect during the chemo process. They knew it was too much information to take in for one pair of ears. Since I'd had an up close view with Mom's chemo, there wasn't much new information. The biggest piece of upsetting news was that I should expect to lose my hair...which the nurse shared without missing a beat before telling me to make sure and wear sunscreen when I went out as the head will get sunburned very quickly. As if this was just normal, bullet list type info to keep in mind. Everything continued to feel utterly unreal. As if it must be happening to someone else.
April 17th: 1st Chemotherapy Infusion. Felt very brave, as I went in by myself. It was a beautiful day. I had my own private room with the same nurse mom had for her immunotherapy they day before (!). I was there for 7 hours (with the infusion taking 5). They will go faster after that first one. I slept during most of it.
I was grateful for the big windows and that I could see Mt. Rainer. I was grateful it didn't hurt when she accessed my port. I was grateful to be starting treatment rather than investigating what needed to be done. Most of all, I was grateful that now I was one step closer to finishing it.
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| A special gift Zack gave me right before I went in.❤️ |
No wonder I need to write all of this down to process it. I started 2020 with a month in Holland. Upon returning in late January, I (unexpectedly) never went "home" again but moved directly in with my mother to be there with her as much as I could (and spent every spare minute packing that house up to move). Up until the afternoon of March 15th, I was a healthy person, with an injured arm. How could it be that one month later, on April 17th, I was beginning my first round of chemo? I was supposed to be spending the month of April back in Holland, taking my mom to see the tulips. Zack had even planned to meet us there during his two week break between moves. I am still trying to put my mind around every bit of this.
No way around, only through.
❤️
March 9th: Right as the whole Corona Virus was hitting the news and Washington State, I went in and met with Dr. Jordan Chun, a sport's medicine specialist. Little did I know he would turn out to be my guardian angel. He was instantly bothered by my lack of range of motion. He suspected it was a worse tear than I knew and that I'd need surgery to see a real improvement. I told him I was leaving for Holland on the 30th, so had a limited window of time. We had a fun time talking about my life there and he was all for getting things going quickly. He managed to get me in for an MRI just a few days later (which was remarkable and only due to the fact that thanks to the virus most procedures were being cancelled). 
April 10th: Returned to hospital for the 6th time that week and the mammogram technician took real pity on me with my fresh port wound on one side and biopsy wounds on the other. She had the uneviable job of squishing my breasts into pancakes on that archaic machine. She said they wouldn't do an ultrasound unless they had to. They had to. I was so scared and sure that it was going to be bad news. Especially, as she got the tape measure out and measured an area that was showing up. The good news was that the radiologist was onsite and he would let me know before I left. He came in and reported that he was not concerned. There were some dense tissue there that are not uncommon and nothing to worry about. This is the first time I cried at any of the appointments.
