Hope

What does it mean to live in Hope with the real possibility of death staring you in the face? That's what I continue to ponder. Somehow, normalcy has to continue; people cannot sit around staring at the "dying" person anticipating the signals that "it" is about to happen, can we? Especially not, when the dying person gives no indication that his death is as imminent as certain statistics indicated. 

I decided, a month or so ago, that I was going to go about my life as if everything were normal and just deal with the extra-ordinary things as they crop up. And then I lost my step, grabbed the door handle nearby, and yanked my arm out of its socket. Now my movement around town is dependent upon a "dying" man rather than him being dependent on me for transport. Or that's what it seemed for a while.

This week Michael had an appointment at the Duke Brain Tumor Clinic at Duke University in Durham, NC. He had the usual radiology and blood work and then we met with the research doctor in charge of his case and the immunotherapy trial that he is now a part of. She came in to the exam room and sat down. She was almost excited as she told us everything looked good. She pulled up the MRI of Michael's brain and showed us the tiny white spot that indicated something had been there and that the area was healing - more specifically, almost completely healed! Then we talked about the trial and how it is done in conjunction with chemotherapy because that therapy is, in fact, the only thing known for sure to be at all effective. In the trial, Michael is given "re-trained" antibodies - his own antibodies that were removed and then "taught" to attack cells that cause the tumor. She explained that in the nearly 2 decades she's been working with this, she has seen very good response and that, because Michael's surgery was done well, and his particular type of tumor responds well to chemo, and Michael is otherwise basically healthy, there is a lot of reason to believe that he will respond well to the immunotherapy treatments. Regarding the word "cure" - that, she said, is what we're hoping for!

We left the Duke Cancer Center smiling! 

We will celebrate Christmas with our kids and grandkids this year, thinking of traditions we can start. We will talk about what we will do when we eventually retire. We will work on plans to continue serving God where each of us is called. And when physical therapy has strengthened my right arm sufficiently, I will sit in the left seat of my Jeep and drive Michael crazy, again!

We are thankful for God's presence. We are constantly aware that our complete Hope is in God and the fullness of the Resurrection.

We pray that each of you will know the certain Hope that began with the babe in the manger.

How is Michael Doing?

 --- that's the most common question I get these days.

And the answer is complicated. Michael is fine. And he has something going on in his body that is unusual has no sure solution. It's hard to think about. It's hard to write about.

Since I wrote last, Michael went through six weeks of chemotherapy (he took pills at home) and going to the local cancer center for radiation treatments to the area of his brain where the tumor was, with the aim of keeping more tumor cells from growing. As expected, he tolerated that well -  it made him tired enough so that he spent his energy preparing for Sunday and then leading the two services on Sunday. He only had a couple brief bouts of nausea. I think he's put on weight!

Every morning Gabi and I walked (and ran) around the Cancer Center while Michael was radiated.

He had two weeks off in which he pretended to be completely normal. I pretended, too. Then we went back to see doctors, who told him that everything was progressing very well. His brain is healing well and brain tissue is taking back the area that the tumor had claimed, there was no sign of new tumor growth, no neurologic deficits - he can subtract by 7s from 100 and spell "world" backwards - and a test of the tumor showed that it is the kind that responds well to the chemotherapy he is on, so it will continue monthly for more than a year. We were encouraged.  He signed papers agreeing to participate in an immunotherapy trial. 

The trial involves using antibodies from Michael's own system that showed up when he was exposed to a particular virus that invaded his body at some point in his life, but never made him sick. (Apparently, many of us have the same antibodies.) The Duke research team believes that the virus has something to do with the formation of the tumor. The antibodies in his system fight the tumor, but reinforcement might even eliminate it - at least for longer than the chemotherapy does. The immunotherapy that he will receive is currently in the process of being made from the antibodies they took from his system; it is the reinforcer. The hope is that the antibody army will be strong enough to get rid of the cells that cause the tumor. It is a hope, not a sure thing. They will also be monitoring for side-effects, though it has already been determined that side-effects will be few.
We are satisfied that we are contributing to a deeper understanding of the treatment of brain tumors. We received pages and pages of technical information regarding the reasons researchers think this is a possibility. They've looked at parts of parts of cells and have a certain understanding of what happens when other cells are applied to them. Frankly, I am amazed at what scientists are able to see about the hidden things that God created. It just increases my awe at God's creativity and invitation for people to participate in understanding and using the goodness of the secrets of Creation. 

These have been hard weeks. We don't talk deeply. Sitting together and breathing deep breaths that turn into heavy sighs says enough.  We hug each other more than ever. We enjoy our crazy puppy together. We discuss news or books together. We call our kids. 

We have our individual ways of coping. I often sit quietly thinking. Deep breaths turn into heavy sighs that sometimes feel like boulders thrown to the pit of my stomach, landing with a thud displacing water that runs silently down my cheeks. I play pieces I already know on the piano. I tried to start a knitting project; it takes too much thinking. I'm helping a friend with some very simple computer work at his shop. 
During his break from chemo, Michael has had enough energy to add a couple meetings and visits to his routine. He continues to be strong in the pulpit. His stamina is down, but he gets out with the dog on occasion. 

Radiation took a chunk of hair. He took the rest.

God's presence is very hard to explain, but very clearly surrounding us. Michael's strength comes from God. Our comfort comes from God. God works through all of you - our community in Wise County, VA, in Ethiopia and South Sudan, an in all the places where you readers are. Your prayers, notes, calls, emails, and even visits assure us of God's presence in the world and give us peace.

 

It's the First Day of the Rest of Your Life. Have a Good Day

He took a few weeks off and went back to work.

 

We went to the doctor for the post-op visit. Michael had a tumor taken out of his brain, and this was two weeks later. No one had really told us clearly what it was we were dealing with. The doctor was cordial enough, but he's a neuro surgeon. Ask him a question; he'll answer it - factually, statistically, from everything he has read. Michael said, "What's the prognosis?" He responded, "18 to 24 months". 

We left. I burst into tears. And then we went to buy some plants. 

As we left the store with our purchases, the cashier cheerfully said, "Have a good day!" And I thought, "Right. Today is the first day of the rest of our life together. Have a good day."

Driving home, all I could think was 18 to 24 months. Have a good day! 18 to 24 months. Have a good day. 18 to 24 months, Have a good ... 

Today we are several weeks later. I have had several tearful days, where I just want to hold on to Michael's arm, to touch him, to be wrapped in his embrace. He's recovering from surgery; he sleeps a lot. He's taking anti-seizure medicine; he sleeps a lot. What was removed from his head left him with a lot of heavy thoughts in there. 

Michael is quiet. He has work to do, sermons and services to prepare. His work requires a lot of thinking about things to share publicly. These days he has other thoughts that remain mostly private. I know he contemplates his losses - experiences he won't have, relationships he won't have time for, adult children he'll miss engaging in conversation, activities that will be limited, curtailed, out of reach. He thinks about God, who loves him, draws him near, embraces him. He keeps on working.

We were advised to get a second opinion at Duke University Brain Cancer Research Center. We did that. They were great. After about five hours, we had talked to a nurse several times, a PA, someone who deals with money, and a doctor, a neuro oncologist. The first thing they told us was, "Don't google it" (gliobalstoma, that is). Yeah, well - too late. Their point, however, is even though there is no cure, and the timeline seems pretty short, there are anomalies; there are those who don't follow the rules. While they were realistic, they also encouraged us to live each day well. "Don't be a couch potato," said Nurse Nancy. And that is our hope. We hope that each day that Michael has to share with us will be the best day possible. We hope that the treatments ahead will bring more days and more good days. And we Hope. 

Another line runs through my head, "For me to live is Christ, to die is gain." What a Hope! We have Hope. We have hope that God will bear us up, that God will be our life, that God will draw us to him. The Creator of the Universe wants us, Michael and me, to be with him today and always! The Creator of the Universe, who clothes the sparrows, who cultivates soil for us to grow in, who bears our grief, carries our sorrows has always been faithful. That is the Hope that we cling to. 

And that is the Hope that allows us, all of us ... you're invited, too ... to Have a Good Day! 

Writing makes things clear for me. I plan to write my way through this journey. You are welcome to join me. I Hope we will have lots of Good Days together.