Monday, June 4, 2007

Jailbreak

Little by little I become less bionic and more human. There are fewer and fewer glistening plastic udders dripping questionably welcome drugs into me. One by one, the tubes feeding into my port are being taken away. An amazing feat of biology has been successfully performed: my stem cells have engrafted, and my immune system has reconstituted itself from oblivion. I have one more night in the hospital, a day to pack, and then I fly home on Tuesday!

This has been a very difficult hospital stay, and I am extremely relieved to be getting out of here.

Senses are precious and delicate things. All of mine have been under attack. My ears are worse than they have ever been, to the point that I have trouble understanding my own mother. Music is muffled, and voices on movies or TV are practically unintelligible. If something comes in from the hospital food service, the nauseating smell of the institutional kitchen overwhelms the smell of the food. My feet are numb and cold, I am constantly sweating even when I don’t have a fever. My fingers are numb and feel clumsy. Everything, even water, tastes strange, if not rivolting. Just getting enough calories in is a real challenge, food service or not. My eyes… :

A few nights ago (how many? How to tell? Time slips by in a sweaty smear), I was reading before going to bed, and I noticed that I was having difficulty because there was an after-image (like after looking at a bright light) that wasn’t going away. What was eerie, and then terrifying, was that there were no bright lights in my field of vision – the reading light was behind me. With my fingers clumsy, my feet numb, and my ears screaming, I was primed to assume the worst: that the peripheral neuropathy caused by the chemo had progressed, and had begun to destroy my optic nerve. Thankfully, both intravenous anti-anxiety meds and a consult from opthamology were not too far away (there are good things about being in the hospital). After having my eyes dilated for five hours (during which time I could not only not see anything, but not even listen to music because my ears are so screwy), the opthamologist arrived and quickly diagnosed a retinal bleed. It seems that little tiny breaks in teeny vessels happen to everyone all the time, but get patched up fast enough that they don’t hemorrhage. Since my platelets were so low, when a small vessel in my eye burst, it wasn’t repaired quickly, and enough blood spilled out into the surrounding tissue that it caused a spot on my retina (right in the middle of my right eye’s visual field) to be perceptible. To my great relief and annoyance, I was told that it would go away over a few weeks. Next round, we are going to be doing even more platelet transfusions to hopefully keep this from happening again.

It is difficult to contemplate the next round, even to go so far as to say “only one more to go!”, because I really haven’t gotten over this one yet. The thought of having to do it again is sickening, at this point. I am focused on getting to sitting outside in my parents’ garden, and not much beyond.

13 comments:

Anonymous said...

my heart screams, my eyes rage. i can only speak for myself, knowing you have infinitely more to bear. you tweak the fears and express the wonder deep inside; how else are we to go on? This way, says Josh. we are with you.

home on Earth said...

Joshua,
Your description of what is happening inside your body manages to bring us along with you in a way that, though difficult, is such a gift. There is an understanding and perspective (that must come from your doctor-mind and from your inherited genetic brilliance) that seems to be evolving at a pace equal to the universe's expansion! Thank you for using your precious energy to put your experience into words and images that keep us present with you. Thank you even though it can be painful to read and to glimpse what you are having to endure. Yet I celebrate your jailbreak and I am smiling at your much deserved pleasure and leisure in your parent's back yard! I send you the greenest greening green growth from a full Vermont spring.
much love and holding,
Ruby

Anonymous said...

Josh,
It is Tuesday night, so....Welcome home! Pablo & I are thinking of you & hope that being back at your parents' with the warm Palo Alto air, the haven-like backyard & familiar Sonny does you lots of good.
Much love,
Marta

Unknown said...

Josh:

You're in my thoughts ... Hope to see you soon man. Thanks for making the effort to keep this blog updated - its helpful for your friends to know how you are.

~Ajay

Anonymous said...

Josh,

For reasons I cannot explain, but from experience, #2 does not seem as bad as #1. Sure, all the same side occurrences are there, but you're better equipped, perhaps mentally, for round 2. You've lived to tell through an unknown in #1, & you'll be more in-tune for what's to come. The hi-dose for #2 will leave your brain mushier--or more mushy--but maybe that's from the increased meds you request, knowing what muted that mental pain in #1. I suggest: earplugs (the kind they wear at them there Nascar races down south), bringing in food that you could tolerate during #1 (for me it was Campbell's soup), 7-up vs water (they're gonna give you the hydration you need anyway, so you might as well enjoy what you consume). You will do fine. Come, get treatment, get better, & get back to Cali.

You're in our prayers.
Zack & Kelly Canada

Anonymous said...

Let me or Zak know when the homecoming celebration is. It would be good to see you again!
-Cousin Jess

MommytoCoandAl said...

glad you are home. I have no doubt that every second, every minute, every hour and every day at home will re-energize you and give you the necessary strength to get through round 2. Thinking of you very often. Thanks so much for updating the blog and keeping us all close.

Jen

Michael said...

Hang in their my friend. I have missed you immensely in the past month of incessant studying. Jackie and I got an apartment in Los Feliz in Shelby's complex. So you have a place to stay when you get better. Talk to you soon.

Anonymous said...

Hi Josh. I just want you to know I'm thinking of you. We all miss you and hope before long you can visit us again; I talked to Julia yesterday and John today for updates. You are very courageous and your writing is so important and powerful. With love, Joyce

Anonymous said...

Your blog is blocked in China, at least from where I was trying to access for a week. I thought you'd like to know this peculiar fact.

Thinking of you often. Feel all of us with you, even in those terrible moments. HOpe you are feeling a LOT better now that you are home. Ellen

Erin said...

Joshua,

All I can say is that you are one solid human being! Thank you so much for sharing your experiences with us, as uncomfortable as they are...

You have been in my thoughts a lot lately... I hope you enjoy your time at home!

Erin

Kacey said...

Joshy - Hold on, stay strong, love Palo Alto sunshine. Your posts are amazing and really are a gift for those of us who can't do anything for you but hope and pray and follow along. I'm looking forward to the day when you make a million dollars by turning them into a best-seller that gives hope and understanding to all people who are either going through this or watching someone else go through it. Sadly, there are many more of those folks than there should be. - Kacey

Anonymous said...

Josh- I was so glad to hear such good reports about the hospital and staff caring for you in the heartland (not 'flyovercountry'). You looked and seemed so solid this past week in Cali. Your latest postings reflect some sort of maturing of your fighting strategy, for lack of a better word. Is heartwarming to obseve. Fancy Science. And Fierce Determination. You and your web of supporters bring both.
Julia