Friday, January 15, 2021
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Friday, January 01, 2021
My New Year's post was originally about COVID-19. It got pretty intense and Anne-Marie had doubts about it. Maybe I'll publish that one later or by request. The post below was the other post I had already half written in my head.
When I was 21 years old, I interviewed for the perfect job. I was just finishing college and my portfolio looked great. I was a finalist for a position for a new architectural firm that was establishing itself in our area as a leader in residential design and historic restoration. The job was everything I dreamed of when I started college. It was a 10-minute drive from my house. The principals loved me. All I needed was to get that final call.
The call came the next week. I didn't get the job. Of all the other applicants, there was one that had many more years of experience than I had and was willing to take less money than they were worth. I couldn't compete even though I was the eager young talent the firm was originally looking for. Even though the job fit my lifestyle and my dreams perfectly.
What happened instead? I took a job in the gritty, math-crazed world of structural design so I could pay the bills attached to my upcoming marriage. I struggled and fought through layoffs and a near-endless list of my own mistakes that I was sure would get me fired. I sat in lines of afternoon traffic since the office was three times farther away than my dream architectural firm downtown. I learned to stand by my company as the economy faltered and the raises didn't come. For ten years.*
And the dream architectural firm? They thrived. I have a feeling my nemesis from the hiring process didn't last long, but the company itself landed projects in custom home design, education and the medical sector. It stayed down the road from my house the entire decade with the only change coming when it moved a mile closer to our house into a beautifully renovated office space.
I don't make it to that southeast corner of town a whole lot anymore, but when I do drive by that office, I can't help but letting my mind wander just a little bit. What would have happened if they had taken a chance on that hungry young kid that crushed his interview?
Have you ever found yourself on the other side of perfection?
In October, when Anne-Marie began to struggle with her mobility, all we needed was to get a scan to find what was wrong. In early November, when Anne-Marie could no longer walk, all we needed was to have the MRI confirm that the earlier x-ray was correct saying it was an easily-correctable bone issue. In late November, all we needed was for the radiation treatment to do what it was supposed to do. In December, all we needed was for the follow-up chemo treatments to get Anne-Marie back on her feet. We pretty much ran the table in reverse.
We've all been there on some level: when what we've tried hasn't worked. The pieces were missing. The timing was wrong. Someone else was chosen instead or chose somebody else instead.
It's not certain that we will ever see the perfection we want to see. The guarantees of completion aren't written in stone. The hurts of yesterday may not heal by tomorrow. That is the state of the current world. These are things I'll leave for the world to come.
For now, I look more toward grace than perfection. Toward peace than completion. Toward love than a pain-free life. Those are the missing miracles of the present.
I don't make it to that corner of my memory to see the perfect life I envisioned a whole lot anymore, but when I do, I can't help but letting my mind wander just a little bit more. But just a little bit. Then I think of the grace, peace and love I've been shown this whole time and embrace the miracles of today.
“To know what would have happened, child? said Aslan. No. Nobody is ever told that.” ― C.S. Lewis, Prince Caspian
*The job at the structural firm grew me in amazing ways and gifted me lifelong friends and professional contacts. From where I stand today, I could never complain about it, though the first year was painful.
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Sunday, December 13, 2020
On Wednesday, December 2, 2020, Surgery 15 was first call. The front door of the hospital wasn't even unlocked. We went to the back entrance of PeaceHealth Southwest and checked in at 5:15 AM as the first patients of the day were slinking in.
Check-ins for surgery work a lot like those for international flights. The watchword is always to be early so you can wait around for a very long time. And we did, but for the first time, we were fully masked up and alone in the waiting room. Pandemic protocols limited visitors to just me. Just me and the wheelchair, of course.
Wheelchairs* at surgery work like international flights as well. They tag them with your name and allow them to follow close by wherever you travel. The patient can consider it their own version of baggage. It followed closer to Anne-Marie than even I did that day.
A few weeks back, Dr. Solti has let us know that the conventional chemo Anne-Marie was currently on would, at best, be 20% effective on the cancer we are now fighting. She was adamant that we need to gain access to the brain and spine to make more progress. That's where surgery 15 comes in.
When they tell you they need to "gain access" to the cerebrospinal fluid, they really mean they're going to drill a hole in your skull. Officially it's called an Ommaya reservoir. The neurosurgeon takes what amounts to a dome-shaped port, places it under the skin and connects it to the appropriate brain ventricle. This allows chemotherapy and hormonal therapy to get past the blood-brain barrier to kill the tumors in the brain and spine. The entire process takes 60 minutes.
Anne-Marie was out of recovery by 10 AM and neurosurgeon Dr. Modha came in to visit us early in the afternoon and let us know that we would be a very unique case of same-day brain surgery. Anne-Marie slept off and on for a few hours in the temporary room and we were home by four.
The surgery was as straightforward as could be expected; the recovery has been anything but. We've found in the last week and a half since the surgery things have not improved. The radiation treatments from three weeks ago did relieve some of the pain, but Anne-Marie's mobility only decreased in the days following.
Treatments fed directly to the brain and spine started the day after surgery. They've been very short to administer and haven't resulted in many side effects, but--after three treatments--they also haven't helped with Anne-Marie's mobility.
As of this week, she can no longer walk any distance without the assistance of a walker. She's fallen several times since last Monday. It's been frustrating every time and frightening many times.
These last six weeks have changed our lives in so many ways. I've become an expert in accessible living and Anne-Marie's become practiced in her upper body strength. Now our prayer is to figure out how to survive this nightmare.
Chemo days through the end of the month are Monday and Thursday. Thursdays only starting in January.
*You may have heard that Anne-Marie's much-loved Breezy Ultra 4 wheelchair was broken at the hospital. (Also holding true with the airline analogy.) This is true, but our guys at Northwest Health and Safety got us all fixed up. Thanks, guys, for getting it figured out so quickly.
Saturday, December 05, 2020
In addition to this, Anne-Marie has been on intense chemotherapy for months which causes a drop in immunity. Even under normal circumstances, being immunocompromised demands a change in daily behavior for anyone in close contact. Last year, I remember rushing to a walk-in clinic just to be sure the list of symptoms I was having at the time were not the flu. Not for my sake; for hers.
Last Monday, when Anne-Marie was experiencing a fever after weeks of scans, treatments and little sleep, her oncologist scheduled a rapid results COVID test. We were given an appointment for the test immediately (as in, drive to this secret location right now) and an hour after we knew a test was going to happen we were holding the result. It was negative, with the issue probably just caused by the stress on her system, but the gravity of the situation was made obvious by the doctors' reactions.
This week, the Advisory Committee on Immunization Practices let America know that they will not be recommending people with severe health issues to be among the first to receive the coronavirus vaccine. That was a disappointment for us because we had hoped that by Christmas, Anne-Marie would have her first dose of the vaccine and be on her way to immunity by January.
It would remove that “one more burden” of isolation from anyone that isn’t immediate family and relieve the pressure on Anne-Marie’s oncology clinic. And to be selfishly honest, it would allow someone other than her husband to help Anne-Marie with all the stuff she has to do to make it through the day.
Instead, we will be second in line, at best. "Group 1B" is what they're calling it with the doses given out some time in January or February.
Here's why it's ok (and I'm sure a lot of these things have been seen a thousand times, but here it is from people that got picked second):
At this point so many thing have happened in 2020 that are beyond our control, this one more thing can't break us. It's not our decision to make and we can't do anything to edit the CDC's conclusions.
The people that the CDC is choosing to be first should be first. Long-term care patients have lived under ridiculous levels of isolation (we've all seen the videos of people pressing their hands against their grandma's window) most of the year due to the possibility of spread within the other high-risk residents in the facility. They've been hit harder than any other group in America and they need relief.
The other group included in 1A is frontline health care workers. These are the people that have put themselves at risk on a daily basis since the spring. Many have lost their lives caring for others with the virus. They need the extra assurance that they won't be risking their own lives in the care of others. We all suffer if they're unable to give that care. Thank you to the EMT's, emergency room personnel and COVID unit workers that have been performing under incredible stress for so many months.
So for most of you, our message has to be "see you next year." You won't see us out much for anything but doctor's appointments. I wish things were different, but wishing will not make it so. We've waited this long, so let's try to go just a little bit longer.
Monday, November 16, 2020
In mid-October, Anne-Marie started to lose feeling in her legs. Numbness and pain was radiating up one leg and then the other off and on, progressively getting worse. By the time November arrived, she was having trouble walking. We believed it was a neurological side effect caused by the whole-brain radiation.
Anne-Marie didn't have a bone scan during the August series of scans, so we scheduled that for the last week of October. Because the scan was performed during the chemo "off week", we didn't get results for a week. On November 4, Anne-Marie had the consult with Dr. Solti who told her that a new tumor had been discovered in the the L4 vertebrae of Anne-Marie's spine. Unless around the same time, Anne-Marie herniated a disc in this same area of her back, the doctors believed this was the cause of the mobility issues, not the whole-brain radiation. It was a 99% certainty. We scheduled an MRI to be sure.
The MRI was performed on Thursday, November 12 and results were revealed the next day. The doctors were wrong. The cancer that showed up on the bone scan was not a tumor in the L4 vertebrae; the MRI revealed that it really was several tumors that were in the lower part of the spinal cord.
The dozen tumors that were in Anne-Marie's brain have spread into the spinal cord and formed six to eight more tumors in the lower back area. These tumors are inside the spinal cord itself and are pressing against the nerves and axons in the lower spine that control lower body function.
|Spine MRI with tumors circled|
Dr. Solti has informed us that this is a much more serious and complicated situation than it would be if the cancer was located in the bone. The implications of the mobility and brain function threat is enough to make anyone completely freak out.
Currently, Anne-Marie is having extreme difficulty walking (not enough to keep her from doing basic things around our home) and needs a wheelchair any time she leaves the house. Because of the urgency of the situation, we are being rushed into radiation treatment starting today. Dr. Siddiqui, the radiologist, believes the treatments could offer relief as soon as the end of this week.
This does not, however, impact the long-term situation. We need options for chemo treatment that will help Anne-Marie's brain. We are scheduled for a consult with Dr. Modha, the neurosurgeon, to discuss solutions this Thursday, November 19.
We've been on the right side of the percentages before and know what it's like to celebrate those victories. We would never fault ourselves for the celebrating.
This time of wrong percentages is one for weeping. There is no shame in that.
Monday, October 05, 2020
The September of all Septembers is over. This is what happened:
Thursday, 9/3: Scan results came in (see my last post)
Friday, 9/4: My birthday. I'm officially into my 40's. Yay!
Labor Day, Monday, 9/7: A historic windstorm hit the Pacific Northwest knocking down a tree in our back yard and takes out the power service to our house in the process. The tree missed hitting the house by inches due to the way it snapped off at the base. We're thankful for God's protection.
Tuesday, 9/8: Our 19th anniversary. Winds continue and eventually knock down a second tree. This one in the front yard. We decide to get a hotel room so the kids can start their first day of online school in the morning. As the winds continue through the week, summer wildfires that are usually fought and contained in the forests and mountains travel quickly into the cities in the foothills. Multiple towns are destroyed by the fire.
Wednesday, 9/9: The kids start 4th and 5th grade from a hotel room not even located in their school district. I secure a permit from the city to re-hook the power then work from the hotel room since we don't have internet at the house. The utility company cuts off power to the house so the work can be completed safely. A friend and I do the repairs on the connection to the meter and call the utility company to come back and do the final hookup. Smoke from the wildfires that is now moving toward the city is beginning to impact the air quality to the point where it's unsafe to be outdoors. The utility company makes it to our house to restore power a little before midnight.
Thursday, 9/10: Power is back, so we start packing for our...
Friday, 9/11 through Sunday, 9/13: 19th anniversary trip to Astoria, Oregon where the air quality was rated as only "unhealthy" rather than "hazardous."
Tuesday, 9/15: Whole brain radiation treatment begins with the first of 10 treatments.
Thursday, 9/17: By the time the third treatment is finished, Anne-Marie is so sick from the radiation and or pre-meds, they put her on steroids.
Sunday, 9/20: Steroids have fixed the problem, but Anne-Marie gets thrush from the steroids and cannot sleep. The smoke from the wildfires begins to clear.
Monday, 9/21 through Monday 9/28: The last 6 radiation treatments finish up with intermittent sleep. Anne-Marie starts losing her sense of taste due to the intensity of the radiation treatments. Her persistent cough begins to return after a month layoff of chemo treatments.
Wednesday, 9/30: The month is over and I want a long nap.
Now that we're in October, the smoke is gone and the wildfires are beginning to be contained. Chemo for Anne-Marie's lungs re-starts on Wednesday, 10/7. We have food and power and internet. We even have active education of our children happening.
That's what we have, so I assume that's all we need for now. Signing off from Vancouver.
|What say you?|