Waiting

Week 6

Photo by Semyon Borisov on Unsplash

Before I start, I need to tell you again—THANK YOU for your encouraging texts, memes, prayers, messages, songs, emails, notes, letters, packages, checks. My goodness, you all have helped us through this. The past few days, I’ve fallen behind in answering. I’m sorry about that. There have been some days that I just didn’t have it in me to reply. Please know that every text and message mean so much to us.

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Quick Update: Ray is going to be given a “stem cell boost.” It is basically a second transplant of his own blood, this time without the strong chemo. It will require us to stay in Portland for another month. We are currently waiting for insurance to approve this second procedure. We’re praying for a quick answer, but doctors tell us it could be into later this week before we can move forward. So for now, we are waiting.

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When we first arrived for our month-long stay in Portland, the mid-March trees were bare. The expected month has come and gone. We are coming up on 6 weeks and counting. Now, the western trees around Oregon Health & Science University Hospital have bloomed, green and lush. Our window views have changed. These early May trees are different.

Mom is here, (which is awesome-there is nobody like my mama. Thanks to Linds and Shar who made it happen.) and we wandered through the International Rose Garden inside Washington Park yesterday. Lucas and I did the same three Sundays ago. Even in the three week span, the sea of rose bushes has swelled. With Lucas, the roses were mostly twigs, with little sprouts beginning to appear. Incredibly, with Mom, the bushes have sent out tall stalks of red new growth, and some bushes have even begun their blossom. In another few weeks, Portland will celebrate this garden with its annual Grand Floral Starlight Parade & Rose Festival.

And the Rhodies right now, whew! Those have also suddenly appeared, giant colorful blooms on Oregon old-growth throughout the streets and gardens around the hospital.

All this life is springing up. But we are languishing. This morning Ray received a text reminder from our Eugene doctor’s office, an upcoming scheduled appointment. We were expected to be home by now. But Ray had to call and cancel, and that hurt.

So here’s the basic situation. I’ll back up a bit. Ray has a bone cancer called Multiple Myeloma, a kind-of cousin to Leukemia. It is a blood cancer which is managed but not cured. Many people are now living years with it, thanks to modern medical advances. One of the ways it is managed is to have an Autologous Stem Cell Transplant. This process has been perfected over the years, and it has a strong track record for patients with MM.

After a lot of research, consideration, and prayer, Ray and I decided together to move forward with this treatment. Ray received half of his own conditioned stem cells back into his body at the end of March.

According to protocol, the other half of his collected stem cells were saved, frozen indefinitely, in case they were needed for later. We never expected to need this second dose of cells so soon. Doctors didn’t either. Now we desperately need them. They are about to be unfrozen and transplanted into Ray’s body, for what doctors call a stem cell boost. It is basically a 2nd transplant, but thankfully this time, he won’t have to endure the awful chemo which makes one so sick.

It will still take about 2-3 weeks in the hospital for engraftment to take place. Engraftment is when the newly transplanted blood cells travel back to the bone marrow to find their homes, settle, and then begin to multiply. I like to give the picture of little soldiers marching and being sent out to do their job. Some of our doctors like to use the picture of a start-up factory. This is the rebuilding of the immune system.

We are going to be waiting, praying, watching for this system re-boot. But even before that happens, we are waiting. We have been waiting for a week for insurance to approve the stem cell boost. First, a bone marrow biopsy had to be taken to prove to insurance that this boost is necessary. They rushed the biopsy results, but it still took 48 hours for the preliminary results. And now, we wait for insurance to make their decision. And of course, there is a weekend in between the business days. They tell us it most likely will be mid-week before this boost is approved.

Ray is stuck in the hospital. These days feel like Groundhog Day. We begged to be released to go home for the week wait, but Ray’s immune system is so dangerously low, doctors firmly told us that we could not go home. So, we wait.

We are grateful that the medical staff has broken the rules and allowed Ray to walk to the outdoor Tram Terrace once a day. It is dangerous for him to even go there, all-N95 masked up and promising to touch nothing. But in his case, the mental benefits outweigh the risks. We go at quiet times of the day. He insists on walking and pushing his own wheelchair. And this has been good medicine, to sit outside, counting cars on the freeway below and picking out airplanes in the sky above.

We’ve been told by the head honcho that Ray’s case is a rare one. According to him, Ray is in the 1%. This type of situation “only happens every 2-3 years.” His partner doctor confirmed this saying, “I’ve been here six years, and this is the second time I’ve seen it.” So, I’m not sure why we found ourselves here, and doctors can’t really explain it either. But here we are.

Our collective best guess, and lab results back this up, is that there was a collision of good and bad. Just as Ray’s immune system was beginning to reboot, just as his little white blood cell neutrophil army was beginning to settle and multiply, there was a storm inside Ray’s body which interrupted their gathering. As the little squad of soldiers was about to blossom into a battalion, the storm of complications wiped them out.

The things that Ray’s body had to battle when he went to ICU—his kidney failure, his heart afib, his struggling liver—it was all just too much for Ray’s baby immune system to fight. Ray’s neutrophils did show up, and made some progress—from zero to 100, to 200, to 600, and to 1000 for two days in a row. But then they stalled. And then they fell. For the past week, he has been back to zero.

Ray has always been a grinder. He values hard work. He’ll work the long hours, and he’ll get the job done. He’ll macgyver it. He’ll figure it out.

But right now, grinding will get us nothing. The most active thing we can do is wait. We are learning to wait. Waiting is not waste, but it feels as if it is, if I’m honest.

Must waiting and worry walk hand in hand? I have to admit, right now, for me, they do. Fear, anxiety, doubt gallop in, like dark riders, uninvited and unannounced. And because of crisis, I am vulnerable. The uncertainty, the whispered what-ifs make me vulnerable. It isn’t just annoying, it is ruthless.

I ask myself:

Am I in flight?

Am I in fight?

Am I in freeze?

Maybe.

But I choose a different F-word. I choose faith.

Faith is hard. What kind of faith is easy? That is not faith. Faith may be simple, but it surely is not easy. If faith is the assurance of things not seen, I have very little faith today. I cannot see it. How can I trust in the unseen while I’m in the midst of the biggest challenge of my life?

I’ve been around religion all my life. I know what the easy answers are. I’ve heard the cliches.

But here is the most comforting thing: God has promised his presence. “I am with you” is a repeating theme throughout the Bible. He has proven this to be true. I mean, just so many times. His mercies truly are new every day. I can trust that. I can wait and watch with that. It is so much. It is enough.

I do know that God holds my hand through this. I know He holds Ray’s. This is proven.