In Sickness and in Health

Battling cancer with love, medicine, and the Giver of both.

So far

We are in Day 2 of a 3-day stay in Charlottesville. Because of Jean’s headaches and overall weakness Dr. Beitinjaneh wanted her to come in for an MRI and some fluids (for hydration). We were planning to meet with one of Dr. B’s colleagues on the SCT team because he was heading out of town for a week, but 30 minutes before he had to leave he showed up in Jean’s infusion bay to check up on her. I don’t know what all Dr. B sacrificed for our appointment, but his care and concern is truly impressive. And comforting.

I made the mistake of asking why he wanted the MRI. He listed several scenarios they wanted to rule out, but the worst was the possibility of the lymphoma making its way to the brain.

So when I got the all clear signal today, a weight lifted along with a prayer of thanks. The pain might be caused by increased blood pressure in her eyes. It might be structural. But thank God it’s not fluid on the brain or cancer.

Dr. B also ordered an ECG (ultrasound of the heart) because of her elevated heart rate. All clear, at least functionally.

Currently she is doing her PET scan to determine the efficacy of the ICE chemo and her eligibility for transplant. Hopefully the results of this test will lift another weight and give us the green light to proceed to Level 3.

Jean’s negative response to this last treatment concerns Dr. B enough to make him consider a different chemo regimen for her third treatment before transplant. This is a bit worrisome. If a milder chemo like ICE hits her this hard, what will an aggressive regimen like BEAM do?

One day at a time. And today we have reason to rejoice. In addition to a clear MRI, Jean slept long and peacefully last night. Her feet have not been itching or burning as much. I think her energy is getting better, albeit slightly. Yesterday I wheeled her everywhere she needed to go. This morning she walked from the parking garage to the cancer center. An improvement.

The following verses are this week’s invitation to prayer in the prayer book Jean and I use:

“Praise be to the Lord, to God our Savior, who daily bears our burdens. Our God is a God who saves; from the Sovereign Lord comes escape from death.” Psalm 68:19-20

When our prayers are met with apparent silence, it is easy to see God as the enemy–the indirect source of pain. Because he could take it away, right? But our God is a good Father who suffers with us–a suffering servant. Maybe Jesus felt pain whenever he healed someone. Maybe he still does. No wonder he escaped to the desert at times.

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Sleeping while getting fluids.

sleeping

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In addition to continued prayer for us, please pray for an older guy from West Virginia named John who has recently been diagnosed with Stage II lung cancer. I’ve been talking with his family off and on as I write. When I told them about Jean, they immediately asked permission to put her on their prayer list at church. I promised to do the same for them.

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Admitted

We are here. Eight floors up on a beautiful, 70-degree day. Thankfully, Jean’s itch is bearable so far. The first chemo drug is hooked up and dripping. We are starting earlier than last time, so hopefully that translates into an early release. Thursday evening would be the earliest from what I can tell.

I’ll try to update throughout our stay. Thanks for praying. Life is a bit brighter than it was last evening.

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Day 2

Despite a restless night, Jean had a relaxing day. The restlessness was due to steroids and some apprehension about the chemo. New drugs mean possible new side effects, so we have to be on the alert at least to a point. Thankfully, she experienced little if any fallout from the chemo so far. Tonight begins the biggest treatment so far–1 hour of etoposide (same as last evening), 30 minutes of carboplatin, and the beginning of ifosfamide which lasts for 24 hours. The ifosfamide is given with mesna to help protect the liver and kidneys. Please pray for all of Jean’s organs during these infusions. It’s still hard not to recoil at the sight of those liquids dripping into her bloodstream. Also pray for a restful night for her.

We keep enjoying good conversations with the staff on topics ranging from who-knows-who to nutrition to theology.

Your prayers are being heard. Aside from normal fatigue and periodic bouts of doubt, we sense deep peace. God is with us. He even speaks through some of the staff here.

This is the view from a lounge called Day Room.

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(Please ignore the random links throughout the post)

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Starting

Jean is admitted. We are eight floors up with a beautiful view of the Blue Ridge Mountains surrounding Charlottesville. The day was spent meeting with Dr. Beitinjaneh and doing various tests. Jean is currently receiving a saline IV. Chemo begins in an hour or so. It looks like we will be here at least until Sunday morning because of the schedule for the ICE chemo regimen. Not cool compared to the anticipated 1-2 night stay, but we’re finding medical field schedules to be more fluid than solid.

If it wouldn’t be for the looming specter of chemo and its effects, we could almost enjoy this. Since I am an official Care Partner (complete with my very own wristband) I can stay overnight. So far, our experiences with the staff range from excellent to superb. Our current nurse, Tim, deserves an entire blog post, and that’s only after several hours of care.

Here she is.

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Here we are.

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And here is poor representation of the view (taken through Blinds Which Can Be Opened But Never Drawn).

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Strike Two

This is becoming a bit ridiculous.

Tonight we heard from Dr. Beitinjaneh (the main man) himself and it looks like things are postponed once again. Without going into a lot of detail, he needs one more set of pathology slides which are being shipped overnight (from God knows where), hopefully as I speak. He will (at least in theory) receive and review the slides tomorrow and Wednesday then meet with us and start chemotherapy (now a 3-day affair–surprise, surprise) on Thursday. Dr. B is sincerely apologetic about the rampant miscommunications but assured us smoother sailing in the future now that he’s at the helm again. Apparently we just got caught up in a perfect storm of holiday vacations, non-coordinating coordinators, inter-team miscommunication, and a mysterious inertia prevalent in big healthcare systems.

But I truly believe the Healthcare Holiday Vacation Behemoth (note the aforementioned inertia) has shaken off its drowsy sleep and is ready to rumble come Thursday.

In the meantime we continue to be impressed with Dr. B. We couldn’t ask for a more understanding, compassionate doctor. I know he knows what he’s doing. Finally, it’s in his lap.

But somebody needs to implement a better communications model. That’s all.

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ANSWERS!

The medical world is finally waking up after the holidays.  I don’t begrudge them for wanting their own vacations too…wait, maybe I do.  What I do know for sure is that the holidays are a horrible time to be sick.  The regular doctors are just non-existent.  It doesn’t make for a warm and fuzzy vacation when you know there’s cancer growing unchecked in your body.  The lymph node under my right arm has changed in the last two weeks.  I can now easily locate it, and it’s sore.  So while I know it’s not a fast growing cancer, that’s fast enough.

I was beginning to wonder if our first impressions of UVA were as authentic as we had believed.  We heard from a substitute secretary the day before Christmas who basically told us we won’t hear news until after New Years.  Ok, so I gave it to her for at least letting us know she didn’t know.  But after that we heard nothing…for a whole week.  Finally, yesterday Josh called our social worker and he seemed surprised with the lack of communication.  He got the ball rolling.  At least someone put fire under somebody’s pants.

Today we got a lot of answers.  The transplant coordinator called me today with the team’s plan.  Dr. Beitinjaneh, lymphoma specialist, is apparently using his doctor liberties and staying out until tomorrow.  (Ok, enough cynicism)  So, this will all be run by him tomorrow for approval.  But currently, the plan is for Josh and I to have another consultation with Beitinjaneh on Friday.  This will be to discuss the preliminary chemo regimen as well as to take labs.  Then if all goes as planned, I will have my first treatment this coming Monday or Tuesday.  Bittersweet news.  It turned an impending doom into a reality, yet I feel incredibly grateful that I don’t have to wait any longer.  The unfortunate part about this chemo is that I will need to be hospitalized overnight each round to allow for the slow drip of one of the drugs.  There will be three drugs and this time the acronym is ICE.  A comforting and warm-sounding name.  Hah!

I also received answers to this insatiable itching I’ve experienced over the last 1-2 weeks.  I was itchy before but not this bad.  I eventually developed a nasty arm and leg rash with it.  It fought to do me in, rendering me sleepless and grouchy as I scratched away.  My doctor put me on steroids today and within hours of taking it my rash was diminishing.  Unbelievable…and to think that I had the drug sitting on my shelf, left over from chemo, and didn’t know I could use it.  Bleh!

I think I was more depressed and discouraged over Christmas than I have ever been.  I faced some of the grandest battles of my life.  (A continuing struggle to release and accept what God has for us)  The waiting for answers did not help.  I don’t recall ever being that tempted to walk away from God.  I was angry and confused and frustrated.  But I think I learned something new.  I learned what it is like to express love for my God in total faith.  When everything in me is screaming that He cannot be good and He cannot be kind, to say He is anyway and really mean it takes more strength than I knew.  And to commit to a God when you feel you have every right to turn your back on Him takes more might than I have.  Yet, He gave me what I needed and coming through that battle I am as committed as ever.  He will always be my God and I love Him.

Don’t ever think that, as a human, you have the capacity to understand all the mysteries of life.  I’m learning this the hard way.  I’m making mistakes but I am learning.  I’m learning that I have full rights to wrestle with God when nothing makes sense, but it must be done with the understanding that my vision is small and I will never see everything.  If our mortal vision were the sum total of reality, we would be of all creatures most doomed and miserable.  Try to make sense out of this world’s brokenness using common sense alone, and it becomes impossible.  At the worst, I realized that the fruit of that futile pursuit is bitterness and hatred.  A railing against the only Being who can truly turn this mess on its head.  To turn my back on Him is to turn against my only source of help.  But far greater than that, to turn my back on Him is to spurn a Love that has never known an equal.  And I will not set myself against the God who is for me!  Ever!

Thank-you to all for your prayers.  God has been faithful and good!

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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.

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Do you like my hat?

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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.

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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.

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And so it continues…

Since last week Jean has been struggling with intense, rash-less itching–an indicator of lymphoma.

God, no.

We prayed and clung to hope.

Dr. Ali wasn’t terribly worried but rescheduled our PET scan, which was completed yesterday. Today, he got the results as he was leaving the office.  He didn’t have many details, but the scan showed increased activity in the one lymph node as well as several nodes throughout the chest and one under her arm.

It’s back.

Fragile dreams, hopes, and plans dashed into a thousand, tinkling pieces. A twisting knife in the gut. My God, she’s gonna die. Hot anger directed straight at heaven, then a sea of grief at the futility of it all. Hard, cold, body-shaking terror. Impenetrable fog. Clinging. Sobbing. Releasing. Numb. Complete helplessness. Faith in a free fall.

We don’t know much about what we’re dealing with and even less about the future. At this point it looks like the cancer is contained to several nodes. Probably Hodgkin’s but more aggressive than before. Dr. Ali wants another biopsy as well as a bone-marrow biopsy. Continuing chemotherapy will mean stronger drugs and possibly a stem-cell transplant.

One step at a time.

With the help and prayers of church family, we are beginning to pick up some of the pieces. Mom and Dad Coblentz are on the way.

Oddly, we have already known moments of peace. It’s all so ridiculously and hopelessly out of control, it feels like we can quit fighting. Maybe it’s like wanting to sleep while freezing to death. Maybe it’s a coping mechanism. But it feels something like the hands of God.

We continue to believe in the possibility of cure. Stubborn faith trumps stubborn doubt.

Nothing is resolved.

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