Sharing Pain

In the past few days I've witnessed up-close the pain of Alison's family as they spent time with her. Alison and I have felt the benefit of prayers from all over, but we're not the ones that need it most right now.
It's painful to see loved ones in pain.
It's hard to be uncertain of the future.
It's demoralizing to feel helpless.
Alison is where she needs to be. Right here getting good care. Right here where we can deal with emergencies. I'm right here with her.
So now I say prayers for those that can't be here. Those that suffer by watching her battle from afar. Those that face their own pain without the support and prayers.
We are truly blessed and highly favored.

All Things Considered

I need to add a prescript to the post by saying that I've recently read Henry David Thoreau's Walden, Chuck Pahliniuk's Fight Club, and Jon Kabat-Zinn's Where Ever You Go, There You Are.

Lately all things have struck me as markedly ephemeral. Short-lived victories. There is a lot of writing about half-life's, natural decay, consumerism, materialism, and all other-ism's related to things. A few things that I've heard that come to mind as I think of them are:

• The things we own end up owning us.
• Things begin to decay as soon as they're made.
• The aesthetics of decay.
• It's like rearranging deck chairs on the Titanic; it's still going down.

But until now, those things were static in the background. But if you think about it for a while, those things make sense. The houses we live in will not be here in 300 years. The new paint we spread (just painted the whole house) will be outdated in 10. If you're lucky enough to be truly talented, maybe one of your paintings, or songs, or poems, or ideas or theories will be remembered. But for most of us, this is it.

Our one shot.

So if you can accept that, what becomes important? (rhetorical) Another theory that make sense to me is that preserving the past is an act of deluding the present. There is no other time than now. One of my own thoughts was that taking pictures hinders our ability to be present. When is a memory-aide a memory hindrance? Will you remember the event better for having a keepsake or just allowing yourself to truly be there? Does remembering really matter? (rhetorical) Is what I'm writing now just a memory-aide, or is it trying to share the now? Does the act of sharing events/moments delude the event or the moment? Why not just let the other people in that event/moment experience it in their own way?

A smile is important. A laugh is too. So is a hug. Equally important then are tears.

A sunset is important. So is a sunrise.

Cold air on the back of your neck is important on a warm day. Warm air on the back of your neck is important on a cold one.

Maybe all that is important is to be witness.

Battling Pain As Well As Pain Medicine

I feel like a child with a skinned knee. "Mommy, my knee hurts." And ten minutes later, "Mommy, my knee hurts."

I am in no way relating Alison to my knee, but am making the point that when something is askew, it's all one can talk about, even if the listener already knows.

Alison has been basically unresponsive since Saturday. Her pain is under control, but I have to come close to slapping her to get her awake enough to take her pills. She's saturated. Sedated. I talked on her behalf today to the pain management specialist, and we're going to chart a different course now. We have to dry her up a bit to try a different way to manage her pain. The goal is to get a responsive and pain-manageable Alison back.

So it's Zombie Alison or Crying Alison. Both are painful to see. I'm reading to her, and sharing my earphones with her, because I imagine that even in her sleep she can be comforted. Just something to say "I'm here with you."

It's very lonely, not having her talk to me. Its as if I have the bag of water and am walking through the desert bringing it to her, knowing that if I can carry it through, better times will be on the other side. Don't get me wrong: family is great. But my favorite times are when it's just me and her together, listening to the clock and the pump and the air conditioning. Listening to her breathing.

Spirit Unbreakable

This week has been a challenge. Alison has successfully completed 3 of 15 radiation therapy sessions. Being clustrophobic, she gets pritty shnookered before we go, and sleeps for about 6 hours afterwords, and really doesn't come back into normal Ali-ness for about 12-18 hours. But she's getting it done. The doctor says that small cell types of cancer thrive in the brain, and that a lot of times they'll radiate the head as a preventative measure.She needed blood again yesterday, which made the shortest span she'd gone without. Doctors say it's the disease's progression.I have been very worried, and we've had some hard conversations where her spirit has shown brighter than it ever has. She's determined! Determined and upset at my fears. But that's what a team does, when one member faulters, the others rally. I am very proud and impressed. It's time for me to stop being an anchor and start lifting her up.As far as getting out of here, we've been making negative progress regarding her pain. Once we figure that piece out though, she'll be coming home.

Doing Fine

Alison had her first therapy session yesterday afternoon. She did just fine, and the Atavan knocked her out until 9PM. She has to wear this horrible mask, which is form-fitted and has wing-nuts that bolt her face down to the board so they can radiate only what they intend to. It's one of those things that is both terrible and necessary.
Her spirits are extraordinary, and if we can get the pain under control via pills alone, she may be coming home soon...

Love's Cycle

Love is a difficult thing to describe because it has so many variations. There are so many ways to love. It's so much easier to use as a word than to describe as a concept. In my experience though, love has a life cycle like every other thing. The one feature I can describe is this: it's permanent. Once love is born, it begins its life.
And we all know lives can go in so many directions.
When I look over at my love, sleeping in the bed, I can see the evolution of our feelings for one another.
When love was born she was new, cuddly, needed constant nurturing, and had a tendency to spit up. She made people stare with her beauty and innocence. She had the power to inspire want in their own hearts for a love. Then love grew into a coachable ball of energy that was both invigorating and enchanting. Everyday love would show us something new. She still needed care, but at the same time, she taught us more about ourselves and eachother than we taught her about anything.
Looking over at my love asleep, I know that love just needs touch now. That giving her time and building her trust, she returns more than we could ever give. People no longer pinch her cheeks, but we do. She has a grace that still inspires, but rather than creating want, she tends to illuminate the loves around her.
And the feature I mentioned first is the best part. Love will always be there. Even when the person that you share it with is not.
We've all felt her touch. Having been touched by love is one of the highest human treasures. In this world of ebb-tide and flood tide, of four seasons and the rhythm of life itself, as we ourselves and the ones we share love with progress along our own cycles, love remains.
Love remains.

SitRep

Alison did an MRI yesterday which confirmed the presence of a tumor just on the inside of the top of her skull. That's the closest aligator to the boat at this point, so we're going to radiate. She went from MRI to Radiation Oncology, where they made her a mask to steady her head (she didn't like that) and mapped where they would radiate. Her first session is tomorrow.
The Medical Oncologists from CN and IU converged, and have determined that in her current state they cannot radiate and administer chemo at the same time. Her platelets are too low, and there would be undue risk of the tumor bleeding on the inside of her skull. The doctors are worried that the treatment would be more damaging than the cancer. So we have to do 3 weeks of radiation and hope nothing else grows in the meantime. It's hard times, but she continues to persevere and drive "the bus" of her care.
As for getting out of here, we haven't talked much about it. Her pain is the main issue, but unlike her last hospitalization, the radiation won't do anything for it. It is nerve pain, and there are nerve medicines and ways to overcome it. We'll cross that bridge when we get to it.
Her spirit remains true, and the doctor I spoke with at length today verified my impression of the matter, which is that Alison is taking all this with grace uncommon to most.

++I wanted to clarify diagnosis at this time. Alison's is still Neuroendocrine, but now they think it is "Small Cell Neuroendocrine Carcinoma," vice the slow-growing, lesser aggressive Carcinoid Neuroendocrine.

More Decisions Ahead

The CT we did in the emergency room showed a growth on the inside of Alison's skull, behind her right ear. The Oncologist on-call wants action as much as we do now, and he says the closest Aligator to the boat is that growth.
So tomorrow we're going to talk to the radiologist about radiating her skull. Not the best option in either of our books. We'll also talk to both the IU doctor and our own regular Oncologist to see about some type, any type, of therapy drug to start the proactive measures on our part.
We're in the right place. We need to keep our nerve, hold to our faith in the days ahead, and trust that it will work out. God has a plan.

Back to the E.R.

I came home last night and found a more-in-pain Alison than the one I left. I didn't think that was really possible. This morning I convinced her that we need to be seen immediately. Her feet are swollen a night with feet elevated has no impact. We can't break the fever with 1000mg tylenol. Her pain is so high that it takes nearly 2 minutes to stand up, supporting herself on her walker and grimacing big. To control the pain, she takes enough pain meds to put me under, and is in a constant state of sleep.

Couple all that with the recent reports of growth, new tumors, etc, and we've waited long enough. I'll keep you posted.

+++We're being admitted now, after several tests...

+++By the way, if you've written Alison lately and not received a response, please do not be offended. She's been in a drug-sleep, basically since we've moved, and in when she's fully attentive, I'm greedy enough to demand her time and attention. I write this because we've received several nice letters from some big hearts, and they've gone without response. Thank you very much if you've written a note of encouragement, etc.

Salutations and Small Talk

Last night I visited Borders, because I've completed reading the books I brought for my trip. When I was checking out, the salesperson asked how I was doing. This happens a million times a day in each of our lives doesn't it?
I instantly said what we say another million times per day in return:
"Good, and you?"
His response was of course:
"I'm doing well, thank you."

Ouch.

If you haven't figured out why I I wrote ouch, it is because I know and knew better than to use the word 'good.' He obviously knew better too, only grammatically at that point, he was the better man.

It's just so easy to say 'good,' we hear it said so many times.
Of course, the difference between good and well is that good is an adjective and well is an adverb.

I'm doing well.
That's good that you're doing well.

He responded well.
My response wasn't good.

And with all things in life, there's an exception. In this case, it's proper to use 'good' when the verbs are sensory.

It feels good to have the grammatical upper hand.

Of course, this morning while still brooding over my defeat, I asked a senior member of my training group how he was doing.

His response?

"I'm blessed and highly favored."

I am too. From now on. I was really happy to hear such a good attitude.

Alison completed another biopsy today, this one behind her port-a-cath on her right breast plate. No excessive bleed this time, and she's fine.

Control [Enter]

If you use Ctrl Enter as a command, you no longer have to type www.com, or http://.com/ or anything else.
Just type the word and press Control [Enter].
It's revolutionary.

Swollen Thoughts

For not posting, not emailing, not looking at a screen that projects light in any way, especially not one that elicits brain activity or subdues it, my vacation has been nice. It has been 8 days since I've looked at a computer. I have watched a few movies, but really I've been reading Henry David Thoreau's "Walden", sleeping alot, and attending classes.
I'm in Washington D.C. for school.
Alison is being cared for by her sister and mine, and her mother as well. She required a blood transfusion this week, saw the Neurofibroma specialist who ruled out her having a Neurofibroma, saw the regular doctor, set up another biopsy for Wednesday, and set up an appointment with a Neuro-surgeon for Tuesday. Busy bee, isn't she?
As far as how she's been, she's been suffering some swelling of the legs and feet, but manages her pain a little better than in the past, and has otherwise been tolerably well. She would probably recommend Relpax to anyone who encounters headaches of the ferocious sort.
My vacation/training ends Friday, I'll look forward to resurfacing in the land of... well, technical requirements and opportunities, then. Do well. We're blessed.

What You Think

Alison's PET/CT scan Tuesday revealed that she has tumors in her spleen, hip muscles, and pelvis now. The doctor disagrees with the neurofibroma biopsy result, having seen the PET/CT and reading the history, and told us that we might never know what this cancer is, or where it started. He said that we should treat it for a cancer that it most likely is, which in his opinion, he feels that all the cancer, tumors and bone involvement is the same. He said since the treatments for what we've assumed was Neuroendocrine have failed, and we've exhausted each of them, we should try a treatment with a chemo that treats other cancers that act the way Alison's is acting. We are seeing a sarcoma specialist and a neurosurgeon soon.

We remain positive, feeling like we're getting closer to the answer, or at least the next good step. I've really come to realize lately that it's not the information you have, not even what you think, but the way you think it.

I know that if we can manage to stay under water long enough this time (it feels like we're holding our breath and running out of time), we'll find a real good place to surface.