Instead of Handel’s triumphant Hallelujah!, our Christmas praise this year sounds more like Whitacre’s version. Sorrowful and uncertain, yet overflowing with longing, hope, and finally peace.
A merry Christmas to all.
Consultation
We just got back from our consultation with the team at University of Virginia’s cancer hospital. Hearing everything clearly is hard enough. I’ll try to lay out the important stuff with sufficient clarity.
We met with Dr. Beitinjaneh (a lymphoma specialist), his colleague Dr. Poddar, and Geoff Barkley (a social worker). If first impressions mean anything, they did a good job. They took more than adequate time to lay out our treatment options and answer our volleys of questions. They were relaxed, confident, and relaxing. After the meeting, Mr. Barkley gave us a tour of the treatment facility.
While the details of the cancer are still being determined, the diagnosis remains the same: Nodular Sclerosis Classical Hodgkin Lymphoma. Since the lymphoma didn’t respond to the standard chemo regimen, the next logical step is a hematopoietic stem cell transplant (HSCT), the goal of which is to raze her current immune system to ground zero then rebuild it. Doing this involves:
1. Two cycles of chemotherapy to a) determine the cancer’s sensitivity to chemo, and b) get the cancer into remission. This chemo could not be the same regimen as before (ABVD), but wouldn’t be more than standard strength. This would take a month or more to complete.
2. Harvesting of stem cells. Jean would be doing an autologous transplant (harvesting and receiving her own cells), as opposed to an allogeneic transplant (receiving cells from a donor). While an autologous transplant runs the slight risk of re-injecting tainted stem cells, the risk of host vs. graft disease is eliminated.
3. High-dose chemotherapy. Once they harvest the cells, the chemotherapy attacks the cancer (and every other part of her body), bringing all immune system function to a halt. This would begin the in-patient portion of the treatment.
4. Transplantation of harvested stem cells. After high-dose chemo, a body cannot restore normal immune function on it’s own. Ergo, the reason for transplantation. In fact, the chemo changes the immune system so fundamentally it erases all memory of childhood vaccinations.
5. Recovery and therapy. In-patient recovery time after the transplant is estimated around 2 weeks. Out-patient recovery time is an additional 4 weeks, meaning we need to stay nearby for daily lab work, medications, and therapies. All in all we’re looking at spending 1.5-2 months in or around Charlottesville. We live 1.5 hours north of Charlottesville. Bleh.
Given all the opening doors, good first impressions, and fitting together of intricate puzzle pieces (a fraction of which I am mentioning in this post), we will most likely move ahead with Dr. Beitinjaneh and the team at UVA. However, we are in contact with Johns Hopkins about a clinical trial for which Jean might be eligible.
Anesthesia Rambles
Brace yourself. That wonderful stuff called anesthesia is still finding a cozy home in my brain.
I apologize for the blue hat picture. How flattering. It was the best they could offer I guess.
What a ride, folks! Admittedly, I was nervous! In the waiting room I felt quite calm though and knew people were praying. It was a simple surgery, but I’ve never been put out, so I was worried about that. What if I react to the meds? What if I don’t wake up? What if it feels panicky going under? What if people have horrible dreams when under but the anesthesia makes them totally forget when they wake up? Ok…THAT was going too far. Leave it to me to think of all the possibilities. Well, I did wake up, and it wasn’t panicky going under, and I had no horrible dreams. Hah! But then I wouldn’t remember them would I?
The nurses and doctors were great. I don’t know his name but one nurse was asking me questions. They always ask you what they’re about to do, which I think is hilarious. Why is the patient supposed to be telling the medical personnel what they’re about to do? I guess they want you on the same page. So I politely replied, “You’re removing a lymph node.” He looked at me and I declare he said, “What’s that?”
“Umm…”
“What’s that?” he repeated.
“What’s that?” I asked. (Did he really want me to explain what a lymph node is?)
“What’s that?” he asked again. (Good grief. One of us is going insane and I sure hope it’s not me.)
We were finally interrupted by the lady nurse standing next to him. She asked me, “Right or left?” (Ok…now they’re talking Greek)
Fortunately it took me only a split second to understand their Greek. This nice southern gentleman was asking me “What side?” (What side of my neck are they taking the lymph node out of) I had misinterpreted his drawl. Well, we got a good laugh out of that one!
I was wheeled into the operating room and it seemed like there were a million people around me all at once. I remember a nurse at my feet putting something under or on my legs, a nurse by my side wrapping my arm, and I nurse at my head. It seems to my foggy memory that they were all doing this at once and all talking to me. I remember thinking, “Wow! They’re strapping me down. That’s very logical.” This was not disturbing to me in the least. I really don’t know what they were doing.
I do not even know when my consciousness left me. The last thing I remember is a nurse putting an oxygen mask over my face. I recall talking with them but don’t ask me what I was saying. Hmmm…I wonder at all the stories that OR nurses must have to tell.
Well, I’m getting quite fatigued and think I better rest. A huge thank-you to all of you for praying!!
Home
Update: We are back at home. The surgery went well. Jean is recuperating and resting.
Update: We are scheduled to meet with a lymphoma specialist later next week at UVA. He is an assistant professor and part of their stem cell transplant program.
Do you like my hat?
Jean suggested the title. She’s going under as I post.
Also, Dr. Ali called with preliminary results from the bone marrow biopsy. It looks clear. This is good because it means the cancer is more or less contained to the lymph nodes. It also means less complications for the stem cell transplant. Thank God.
Prayer & update
Jean’s regular biopsy happens tomorrow at 10:00 AM. Instead of just a sample, they want a complete lymph node which means surgery. Please pray.
Other than that we don’t have much definite direction. We are in the process of scheduling a consultation with a stem cell transplant specialist at the University of Virginia cancer center.
His voice
Today as Jean lay on the operating table for her bone-marrow biopsy, I made my way to the hospital chapel.
My wife’s pain, not her blood, makes my head spin. I know it’s weak, but I’d rather pray than faint. Or pace the halls like a caged lion.
In a way the separation symbolized a painful truth of this whole battle. When it comes right down to it, she is the one on the table, under the knife, risking her life, poked, prodded, facing down fear, hammered by toxins, racked with pain. She is the one walking through the valley of the shadow of death. I can walk with her to a point. I can stand by and pray. But this is her burden, and I can’t carry it for her.
The helplessness kills.
I noticed an open Bible on the table at the front of the chapel, so on my way out I stopped to read. The page was open to John 20. I looked for red print.
Jesus said, “Peace be unto you.”
He is closer than we know. Through an open page, an ancient story, He speaks.
His kingdom is at hand.
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P.S. Jean is recovering fairly well from the bone-marrow biopsy. More post-procedure soreness than before, but okay. She’s a brave woman.
Life with Abandon
I cannot thank all of you enough for the support, love, and prayers you have given on our behalf! Truly overwhelming…
Here is the story from my perspective…
I never remember sobbing as hard as I did on the eve of November 30, 2012.
My husband answers the phone and I know…
The doctor asks to talk with me. “How incredibly cruel,” I think. I have no choice but to answer. He says enough for me to know, but I stop him… “Please…can you give this information to my husband?” I cannot take it. He graciously replies, “Absolutely! I can talk to Josh.”
I quickly hand it off and I freeze with raw terror. I start to cry but am cut short in numb shock. I mostly just sit and stare until Josh finishes with the doctor. I am not listening to the conversation.
Josh holds me and we both weep. I break into wild, raw sobbing. I hear his soft words in my ears, “Stay with me, Jean!” He thinks I’m losing it mentally.
When the tears subside, he tells me about the giant we are up against and the possible course we have to take to defeat that giant. And that does it for me… Something snaps inside.
I no longer care. I don’t care about what I have to face. I don’t care about what they have to put me through. I don’t care whether I live or die. In fact I say, “Why don’t I just die now and get it over with?” I immediately feel ashamed for the confession…
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In retrospect I believe that what I went through at that moment was a complete surrender. I was a trapped puppy with a monstrous German Shepherd lunging at me. I knew I couldn’t fight it, so I gave up. I knew the road ahead was way too long and painful for my kind of strength. And I simply gave up. Giving up doesn’t always mean despair. It gave me more peace than I had known in a long time. And in that moment I had a glimpse of what it might look like to live life with complete and full abandon and I wanted that more than life itself.
I have lived the last 6+ months of my life so carefully, trying to control. I acted out of the misconception that it was my responsibility to control my health, my future, my fertility, my reputation, etc. Then when I was given more bad information than I could absorb; when I was brought to the foot of Mt. Everest and told to climb, I realized that my sought after control was futile. Worse than that, it was bondage! I glimpsed what it would be like to live as if you had nothing to lose. When I looked that fully in the face, I saw more freedom than I’ve ever known. Believe me, after all that news I felt I didn’t have anything more to lose.
And so…I pray for life with abandon. What all that looks like I don’t fully know. But I do know it has already started to change my perspective…
For example, I struggle with wanting to control my reputation. I deal with “white-coat” issues. If you don’t know what that is, thank God right now. I didn’t even know it had a name until I got into the medical realm. Basically, it means that the whole aura of the medical field freaks you out and elevates your pulse and often your blood pressure. At some unknown time in my life I picked up this fear and it went to my head. It’s not that I’m afraid of needles or procedures or even most things medical. I wish it’d be that because then the fear would sound rational. It’s simply a fear that if my pulse is high, the nurses/doctors will freak out and I’ll look stupid. So of course that makes me nervous and elevates my pulse. A ridiculous but real cycle. I still battle with it whenever I have my vitals taken, although having to face it very directly in the last 8 months has definitely helped. And you always thought Jean was this nicely put together, perfectly sane woman, right? 🙂 It might make zero sense to you…thank God if it does! Believe me, I don’t say these things because it’s easy. This is a huge area of shame for me, but I refuse to let that shame define who I am. Neither do I glibly throw this out for you to read. I do it because it’s part of this life-with-abandon thing. And if in telling my story I can help someone else, that is my purpose in life right now. In that moment of complete surrender Friday evening, I no longer cared about reputation, about what doctors or nurses or anyone else thought of me.
I also had lots of hopes and dreams for the future with my husband. I wanted to control that too. We wanted to have a family; to go on the mission field; to do so many things together. Whether God will give those things or not, I cannot profess to know. But now instead of focusing on them, I choose to focus on the fact that right now THIS is my journey; THIS is my story; THIS is my purpose.
I do not know if I will live to see normal life again. But that no longer seems the point. I am His. My body is a sacrifice. I’m plunging in, folks!
In Sickness and in Health 