Saturday, March 30, 2013

MRI of the soul

This has been a week of deep introspection. Adding to the usual spiritual intensity of Holy Week were a set of MRI scans made on Monday and Tuesday in which my brain and spine were interrogated, not by the Holy Spirit, but by magnetic and radio-frequency energy that makes MRI the diagnostic powerhouse that it is. Combined with prayer and contemplation, I’ve been examined into the deepest recesses of who I am.

My previous post describes in brief what the MRI scans discovered. The images were not a pretty sight. Filling much of the space from which my brain tumor was excised last August is a moonscape of recurrent melanoma—a heterogenous jumble of rind and pith. If I hadn’t seen for myself just how large and extensive the mets were, I don’t think I would have believed it. I can understand why surgery     and radiation therapy are not good options for me. The visual evidence is damning.

Complicating my medical outlook is that melanoma cells have migrated from the tumor bed on the right side to the brain’s left ventricle and established a 3-mm met there. With such open access to the cerebral spinal fluid, cells have also floated down the spine and set up colonies, including a large lesion that descends 4 cm below L1. This region will be treated by standard radiotherapy starting next week, which should palliate the worst of the symptoms caused by the tumor (e.g. low back pain) and make me more comfortable.

This wide dissemination of melanoma weakens what little logic remains for treating the really serious mets in the brain. If they were the full extent of my problems, a good gamma knife team might do me some good. Unfortunately--to employ the medical cliché of the week--the cows are now out of the barn. Even though the only evidence of melanoma outside of the central nervous system is one small met in my right axilla, the brain is a notoriously difficult organ to treat and mine is in a hell of a mess. We’ve done about as much surgery and radiotherapy as can be tolerated without turning my brain to mush. I’m not willing to make that tradeoff given that I’ve already seen how hard it is claw back from brain treatment.

So while I reserve the right to change my mind, my decision—made with input from my family—is to not intervene in the brain. I met separately this week with my medical oncologist, radiation oncologist and neurosurgeon, and they all agree that Gamma Knife is unlikely to do me much good therapeutically and almost certainly would diminish my quality of life in the two to four months they believe I have to live. Dr. Curti, who does melanoma research himself, will check with specialists elsewhere to make sure there isn’t a clinical trial he doesn’t know about that might be open to patients with brain mets (which is rare) and for which the downside of treatment isn’t worse than what I’ve already experienced. I don’t regret having tried the ipi-whole brain radiation regimen; that was our best shot. It probably bought me some time, but was very unpleasant and I’m seriously disinclined to do anything like it again.

So in the last three days I’ve been assimilating the implications of my do-nothing strategy (other than palliative radiation to the spine). This is where the examination of my heart during Holy Week comes in. I’ve asked God for his clear diagnosis on my spiritual health. While probing our heart of hearts requires peace, calm and focused attention, it at least doesn't require the use of technology. This is a private exercise open to us all. I know that corruption lies within my heart and that this is where healing is needed most. While the odds of surviving the cancer in my brain are pretty slim, I know that God’s grace covers my heart. I will live into eternity based on the promises he has already made to me.

“Physicians will not heal you, for you will die in the end, but it is I who will heal you and make your body immortal.” –Pascal’s Pensees

I will in coming days be spending time with family and friends, resting as needed, and talking with God pretty much nonstop. As best as I am able, I will be sucking out the marrow of life. While I don’t know the number of my days, I expect to enjoy each of them to the extent my health allows. Radiotherapy of my spine should make my legs stronger in coming weeks so that I hopefully can walk comfortably again. We’ll be spending Easter morning with my Mom at her church in the Portland area, and tucking afterwards into what I expect will be a tasty brunch. After that we’ll head to our beach house near Waldport and enjoy a day or two of unusually mild spring weather. Is there any finer sight in Oregon than a blue-green corrugation of wild surf stretching out to a sky of robin's egg blue. Well, there may be, but this is one of the best for those of us lucky enough to live here.

I’m not happy about how melanoma has sidetracked the life I’d hoped to have while approaching my 60th birthday, but none of us gets a guarantee of our physical health as we age. We all are mortal. We all will die. I’ve been blessed with a splendid life and I know that when it ends it’s just beginning. On this Easter eve, my heart and mind turn to Jesus in the tomb, about to explode forth in new light and new life. His resurrection presages our own. Hallelujah!

5 comments:

Zan said...

Thank you for this most moving post. I have been following your battle from a distance for some time, as my 18-yr-old niece is also battling metastatic melanoma. Your sharing has been a real blessing, not just for us but for others. Like you, our hope is in the resurrection and in the One who will ultimately bring healing to us all.
May God's grace be on you and your dear family in these coming days.

Thandi said...

Amen. We have the hope of your resurrection. God doesn't lie. 1 Thess 4:16-18. You'll get to meet Him first

Anonymous said...

Love to you and Ellen. We have been and will continue to pray for you daily. God bless you. By death He conquered death. He is risen! Jane and Bob

Anonymous said...

Oh, Peter! I know what a kick in the stomach it is when the doctors say that they have no effective treatments to offer you. I am so sorry that you are facing that now.

However, I found a blog that you wrote last August very inspiring. In it you were discussing your reasons for not getting scans after your original diagnosis. Basically, you wanted to live your life in peace and not have to constantly worry about what the next scan would show. I thought that was a very thoughtful and wise decision. I found it inspiring.

Now, after many months of getting caught up in scans, tests, treatments, appointments, and side-effects, you are back to living your life in peace. Not by your own choice this time, but at least there will be no more traveling, poking, prodding, or clinging to gossamer threads of hope.

I know that your faith in God and your wise philosophical bent will help you transition back to your former "let go and let God" position. It will take some time, but it will happen.

Enjoy all the little things the life brings your way in the coming months-- Easter brunch, ocean views, relaxing with family, and reminiscing about the fun times. I hope you have a hospice connection that will help your family accept and enjoy the coming months, too.

I have always enjoyed and benefited from your blog. Thank you for sharing your journey. I hope that you and your writings continue for some time to come.

DORRPOSTS said...

Hi, Peter! I've never had the privilege of meeting you, but my daughter Hannah Dorr is a good friend of your Ali, and my dearest friend Denise Zipp is also a friend of yours. In addition, I had the privilege of staying in your lovely beach house a few years ago, with Denise and several other women in the small group we were part of at that time. I haven't read your blog in a long while, but this morning, Denise shared your latest posts with me. Your brave and inspired words brought me to tears... both tears of sorrow and tears of joy. You are such an inspiration to so many, Peter. My husband Mark and I will be praying for you and your family in the days ahead, that you will enjoy sweet fellowship together, that you will have divine wisdom regarding your medical treatments, and that you will know God's perfect peace through it all. Take care! ~ Johanna Dorr