Partnership

We have partnerships we don't even think about. From those we form with the darker parts of ourselves, the ones that we try so hard to hide, but yet trip over time after time, to the obvious ones in business, play and life. The partnerships of convenience or necessity, intensely bonded, but fleeting. I believe they make me feel guilty because when the intensity fades the partnership fades, you're simply less involved in the activity, or the person or the need.

I'm currently in a partnership with Dr Godley. I try to read her like someone who I've known much longer. I feel familiar with her because she's the key to my recovery and she is making the decisions that I only see or hear the top-line on. She's partnered with colleagues, Fellows, distant oncologists in other countries to figure this out and set a course of action which she shares with me a week at a time. It is a partnership of necessary convenience. She is no less invested in this partnership because of its nature, but we both know that it will fade by the end of December and continue to be less intense until it hopefully becomes the inevitable check-in, see you next year.

I got off on this thread because of line of copy I heard on NPR yesterday. No more than a sentance, it described Bill and Hillary's intellectual/political partnership, not marriage. The general point was that they are "great partners", focused on the things that matter to them, forgiving to each other at least in a public way about more personal transgressions, but seemingly united in the larger issues that have nothing to do with their hearts.

Anyway, it was this idea of convenient integrity of relationship that made me want to write about the partnerships that have shaped the trajectory of my life, taught me what I know to this point, inspired me and supported me and encouraged me and loved me, warts and all. I can't tackle them one at a time- I can't there are a lifetime of them and so many in this last decade that I couldn't even cover those.

However, not to the exclusion of the 100s of partnerships I've enjoyed over my long and unusual life, I want to honor Mary Joe for her unique blend of love, affection, patience, insight, humor, curiousity, forgiveness, loyalty and empathy. This disease came upon us very fast. I was trying to recreate a life that I had prior to my infectious brain surgeries and it wasn't working very well, I was stuck in a past not looking out to a future. I became mired in what could have been- not what was- But, as we know cancer is a very focusing disease and it has quickly done its job.

I was diognosed on August 18th, from a Pathology Lab in Wisconsin on a referral from my primary care Dr. I was shocked and stunned to say the least. I went to UCH and confirmed the diognosis, was referred to Dr Godley (great name) and our partnership was formed. She planned, I begged for some time to redirect my life- change critical things that I felt would unbind other partners from what could become a burden to them or our enterprises. I told Ted first at lunch when I got the call from Dr Ettner. I'm not very good at keeping things to myself. Mary Joe. My children. Mary Joe's children. Vicki. My sister. Her kids and of course the people who call out of order of importance and you just can't restrain yourself and you tell them. It's kind of a controlled leak moving toward an uncontrolled flood of information. Zachary's idea of a blog was a great one - I love working in it, I like the freedom to talk about what is uppermost in my mind. I have unique worlds of people that I have lived in and nourished my mind and spirit in and all you guys may have in common is me. But through this medium, you see and hear each other, and I think it becomes obvious you have so much more in common than me.

Mary Joe is telling me to lay my weary head down. No doubt she'll set up some media for us that was provided by her son, my buddy, Jake. He downloads tv and movies from here and England, some of it really edgey, some dark, some writerly--as he says it's the best of category download for this occasion of my incarceration--the best of reality tv, the best movies, the best sitcom, the best brittish etc. He ordered me an external harddrive and then made it all happen seamlessly. He answers his phone in class to provide tech support. He's a generous and kind young man, growing visibly on every level.

Something that Mary Joe and I are talking about and internet researching is destinations we each want to take our daughters (Erica and Kate) where it's easy to get in and out of, and a space to have normal conversations and pass some time comfortably. Mary Joe says she and Kate are getting together in crises or ceremonies and she misses the opportunity they used to have to discuss a topic "ad nauseum". Erica and I have rarely been alone, we have yet to discover our common language, that easy rhythm that only comes with the luxury of time and attention. So, we were thinking to ask the people who check in on this blog to share their favorite trip and why it was so. Mary Joe will read them aloud to me as they come in, as we've been led to believe that this last chemotherapy administered today and a couple days hence, might be the one that finally lays me low. It's been remarkable how I've somewhat thrived on chemo so I don't know, maybe I'll do fine with absolutely no immune system, it has certainly killed my rheumatoid arthritis.

I dream of golf. All who know me, know that's a great sign. So, probably I'll be lying down and kinda staying down for the next several days. Ingrid's bone marrow will be mine on Monday. Then, if all goes as planned, it will start to create healthy replacement blood cells gradually rebuilding immunities, strength and aliveness. Won't be talking much. That's where Jake's media kicks in 24/7 and Zach and Erica will call and make any important entries in this blog. So, send me your travel essays please. I welcome your words and prayers.

Love to you all, I'm all choked up here thinking about you.

Arnie

Next

I'm sitting in 6E at UCH waiting to get my last chemo infusion of this cycle. I'm also trying to find a voice for this entry, I'm rusty. This has been a strange cycle, the effects of what they are giving me are cumulative and daunting in subtly, it sneaks up on you and provides a blanketing malaise and inertia that I have not known in this treatment. As that builds, the cancer vortex that I've tried so hard to hover above, to some degree, some how snags a piece of your clothing like barbed wire and begins to pull into it. You've got cancer and pretty soon it owns your thoughts and begins to direct your life. I guess it's inevitable.

Tonight it's a week later, Thanksgiving Sunday and I'm reporting to UCH at 7:30 AM. I've had a good day today, but that's after being sicker than I've ever been in my life, ever. For the last 3-days- wednesday and thursday being the worst of it, I've had a reaction to the drug that I got on Monday, they lied when they told me that Friday was my last day of chemo and just threw one on me Monday. Zach came on Tuesday for Thanksgiving week and we had a great day goofing around and getting hard to find bike parts for his fixed gear bike and eating and seeing movies. Erica got here on Thursday and spent most of her time nursing me back to health, missing my really good day completely. However, it's easily been the best Thanksgiving on record just having my kids here in Oak Park. MJ went to South Carolina to be with her daughter, so for the first time I had my kids to myself for three days. I did however fade that night after dinner and just kept sliding until Saturday. Today it's like it never happened, so, there's my point- the disease and its treatment are predictably unpredictable and therefore not far from your mind- you either feel too good or too bad, but you never just feel.

So, here's what's going to take place over the next few weeks. I report in the morning and get a infusion of some magic chemical that is to protect my mouth and nasal system from the radiation. I begin radiation 3 times a day on Tuesday for three days. At that point being very low on a functioning hematological system, they rest me for 2- days and them begin the infusion of new platelets. The rest is watch, measure and wait for my blood system to rebuild itself on my sister's platelets. I believe this will be a rough go, it's basically taking a person to the lowest form of life function and rebuilding a healthy and valid hematology from that point.

I want and ask directly for your prayers, given in love and in what ever form and to what ever greater spirit you see yourself praying to. I believe that I can beat this, but like the first segments of my treatment, the love and meaning that all have brought to me during these last months has sustained me more than the chemistry. While I wouldn't want to do without it, the chemistry treats illness, love treats ones soul and that's how we survive in the end.

I've asked Erica and Zach to make medical updates to this blog for me as I progress deeper into the effects this course of treatment. While I may be able to post for a while, I can't be sure for how long and I want to stay in touch.

Lastly, this has been an amazing experience. The age and time we live in has made it possible for me to tell my story to so many people and feel the love and imagination of friends and colleagues in return. It is a wonderful life I have, it's wonderful to have the freedom to communicate my thoughts, fears, hopes and challenges to family and friends and colleagues. It's at once very private and very public and it couldn't happen but for living in these times.

Arnie