Update 4.11.12

The cardinal rule is to never cry after the doctor reads the report.

Ever since I’ve met Brian, I always remember him telling me that when he sees his mom or friends crying after the doctor reads the report, it’s hard for him to concentrate on asking the right questions. It makes him feel bad and he wants to comfort the people crying rather than keeping a rational mind while discussing further treatment options. It’s one reason he said that he needed a strong wife by his side.

Today I broke that rule. In fact, I completely shattered that cardinal rule and ran it over with a mac truck.

It’s been a rough few weeks since his last chemo treatment. He’s been achy, extremely fatigued, nauseous, had joint pain, muscle spasms, been itchy, got poison ivy, got bit by a tick, and even got sick this past weekend and had a low grade fever. It’s hard to watch that. In my mind, it’s felt like he was falling apart in front of my eyes. And while I realize that those things are pretty minor for someone going through chemo, it was really hard to watch. He hasn’t been himself, and that’s been the hardest part.

So it didn’t help prepare me for today. I already had a bad feeling about it, but was hoping it was just my paranoia that was getting the best of me. Brian always says that the best way to go into a results appointment is with no expectations.

Since Brian had a cold this week, and I woke up with a sore throat, we both had to go to the “sick” waiting room until they assigned us a room. When they walked us to an exam room (rather than a treatment room), I thought it was a little odd. But, I didn’t think much about it because half the time they don’t know what’s going on, so they probably just forgot that he was supposed to get treatment today as well (which is why we should have been in a treatment room rather than exam room). When we mentioned it, the nurse said that we didn’t have a chemo appointment on our schedule for the day. I figured it was because they, again, were confused.

Brian got his blood drawn for labs, and then the doctor came in. And then, shortly behind him, the transplant coordinator came in. I’ve met her before..her name is Ellen..and she’s really been sweet to Brian and his family. I was hoping that maybe she was just coming in to say hi. By that point, we had Brian, myself, Patti (B’s mom), Larry (B’s step dad), the nurse drawing blood, Dr. Abyankar, and Ellen (the transplant coordinator). 7 people in a small 8×8 room. I said “uh, I don’t know if this is a good thing or a bad thing.”

Then Dr. Abyankar began to tell us that the cancer is growing again and immediately began talking about a 3rd stem cell transplant using “cord blood” (the blood from the donated umbilical cord of a newborn baby). A 3rd transplant had been suggested a few years ago, but was pretty quickly dismissed by Brian because we’ve been told that the odds of curing you are very slim, where as the odds of “eliminating you” are overwhelming.

After that, things kinda got drowned out and I couldn’t concentrate on what else they were saying. I couldnt stop the tears from pouring down my face, although I did manage to stay quiet, to help not distract Brian from hearing what he was saying.

I finally managed to tune back in to what they were discussing after a minute or two.

The option they are really pushing for is that 3rd transplant with cord blood. It is the best (and really only) hail-mary attempt at a long-term remission. Another option Brian asked about was possibly taking Revlimid, a pill taken to hopefully shrink the cancer some..it is approved and widely used for Multiple Myeloma, but has shown some (~30%) promise in Hodgkin’s patients. The doctors aren’t thrilled about that option because with that drug, there is a lot more of a risk to develop other cancers. Plus, there isn’t an overwhelming success rate with that drug compared to the drug we were just on (brentuximab / SGN-35). They don’t want to continue the chemo we were doing because it is obviously causing the “rebel” cancer cells to rise up and start fighting back…and we don’t want to continue to “call out more rebel cells” by continuing treatment…only causing it to grow bigger, faster. There are one or two different chemo regiments that Brian hasn’t taken (that they usually use right after diagnosis), but the doctors don’t think those would do much good in the long run, plus, they have really nasty side effects.

I think the doctors really want us to consider the 3rd transplant. They would need to get a biopsy of another lymph node first to confirm that it’s cancer. Brian hasn’t had a biopsy since before his second transplant due to the location of his cancerous lymph nodes. They are all in his chest near vital organs (lungs/heart)…so it’s just risky to do it. I guess the doctor called the surgeon today and said that they could go in through his mouth/trachea/lungs and possibly get a biopsy sample of a cancerous lymph node that is near the lungs. That sounds scary enough.

When the doctor left the room, I couldn’t hold back any longer and the flood gates broke. Loud, audible sobbing. Then his mom joined in. I’m pretty sure even Brian and Larry had some tears. There’s just something about being so completely out of control and helpless that scares the life out of you.  That’s how I felt…and all I could do was cry.

So, that is where we’re at now. The doctors will all meet (and will also be teleconfrencing with the Omaha transplant doctors) on Monday, so they will probably get ahold of us then to give us a final recommendation. We have to figure out what step to take next. Do we take the Revlimid and hope it shrinks or goes into remission for a season? Do we take the steps to do another transplant…do we want to take the risk? If we do a transplant, it will mean at least 6 months away from work…probably 100 days at the Hope Lodge.

As far as I could gather, these were our only options left.

Or God could do a miracle.

I read something the other day that I will probably never forget, and I’ll probably always remember when facing something like this. It was on a young guy’s CaringBridge website who suffered a massive stroke while running and died a few days later. A friend or family member wrote:

“We knew God would reveal himself in this ordeal.  We knew it.  We just didn’t know WHAT he would reveal about himself… his healing power?  His gracious love?  His peace that passes understanding?

He is revealing himself to be a loving father – who comforts those who mourn – who is near to those who suffer.  Who is tender with those who are broken-hearted.”

That’s what I’m learning. That God is everything He says He is. But that doesn’t always mean we’ll experience every part of him in every situation..or that we’ll get the parts of him that we want to get. After all, without sickness, how can He show us that He is a healer? Without grief, how can He show that he comforts? Without worry or fear, how can He show us that he is the Prince of Peace, the Wonderful Counselor, the One who brings order to the chaos?

“…look with your eyes and hear with your ears
and pay attention to everything I am going to show you,
for that is why you have been brought here.” Ezekiel 40:4

I’m not sure what God is going to show us in this…but I know that He won’t let us down.

As of now, Brian is on his way out to Manhattan, KS to hunt turkeys with his best friend on a 5 day, 4 night hunting trip. I am praying that they have a blast and that Brian lives the life out of every second he’s there. I know that he sees God best when he’s in creation…I know this time will be good for him to clear his head. I’ll definitely be missing him while he’s gone…but you better believe I’ll be counting down the minutes until I can see him again.

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One thought on “Update 4.11.12

  1. Hi Angie.
    I am one of the people following your blog and praying for you guys. When I received your words today,I wept for you, for Brian and perhaps for myself and my wife too. I have been through the fire;diagnosed with stage three Cancer of the throat and tongue (with lymph nodes affected.) The treatment was more than harsh, and has left me with side effects that are difficult to live with. I shared your worda with my wife,who told me that no one saw her cry either…but she would lose it big time in the shower. the water would wash the tears away… but not the pain. Pain comes from love…It shows us just how real we are. I was told that I might die and would probably lose the ability to speak. (I am a minister and preacher). I am still here….
    I just want to let you know that I am sending as much love as you can receive You have a brother in a small corner corner of Canada who is praying for you,and will continue to do so. If you want I would love to ask our prayer team to pray for Brian. (We don’t add folks to our prayer list without their permission.)
    Peace be with you.
    By the way… I am still singing and preaching. It’s amazing how alive I feel now when I step into the pulpit,or grab my guitar to sing.

    John+

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