Author, Columnist and Freelance Writer Patch Rose
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I spoke with a friend of Cookie's and have learned that although Cookie is exhausted today, the memorial service yesterday at the Civic Center was very well attended. I was surprised to learn that Cookie was able to sing, but then again singing has always been a passion of Cookie's and that is how Cookie and Patrick met. I am sure that Patrick was listening and smiling.
Cookie will be making her way east with our brothers wife, Linda, who also happens to be one of Cookie's oldest (but not old) friends. There will be a memorial service in my church in Dingmans Ferry on February 28th. If you haven't read the home page, there is more information on there.
Please continue to keep Cookie in your prayers.
Jean
Saturday, February 07, 2009
My sister, Joan, and I are back home now. Leaving Cookie behind
was not easy, but she has her son Haakon there right now. They were
headed to Cookie's home for some alone time. While in T or C, we felt
that our family grew with some of Cookie's close friends. Thank you to
everyone for all you did while we were there, and for all you do for Cookie.
I was told that there is going to be a memorial service for Patrick on Cookies birthday, Valentine's day. We were able to fulfill Patrick's wish of donating his body to science, and I think that Cookie was glad for that. It is not always easy to fulfill loved ones wishes, but Cookie did everything Patrick wanted of her. There life together was way to short, but filled with love and adventure. Please continue to keep Cookie in your thoughts and prayers.
For those of you on the east coast, we are also going to have a memorial service when Cookie comes here to visit. I will update this site for as long as Cookie wants, so you can check back for more details.
I just feel the need to let everyone know that the nursing staff at this very small hospital was excellent. They were so kind and thoughtful of Patrick, and the family as well. They let us come and go as we needed and they were always asking if we needed anything. A big thank you to the wonderful staff there.
Wednesday, February 04, 2009
First – sorry for the delay in updating this site. However…. Cookie called my sister and I at 3:30 am on Tuesday morning, she thought the time was near. We were able to get to pick up Lars and get to the hospital within 10 minutes. Patch is still hanging on. I am typing this at 4:00 am at his bedside. He is so healthy looking, even now. Remember looking at your child/children when they are sleeping; they look so peaceful. That is what Patrick looks like, he is sleeping peacefully. There are no more headaches for him, and no more pills. We aren’t sure if he can still hear us, but we talk to him anyway.
Lars has gone back to New York and Cookie’s younger son, Haakon, has come to be with Cookie now. Also Pat’s brother from Virginia has come and was able to sit with him as we took Cookie away from the hospital for a little while to eat. We sent Cookie home to a friend’s house to get some rest. She has not slept much and I don’t know how she is holding up. My sister and I took turns sitting with him last night. He rested comfortably through the night.
The nurses here are wonderful. They make Patrick as comfortable as possible, and even ask us if we need anything. The compassion that they have for their patients and families is amazing. I cannot say enough good things about these women. (sorry we haven’t had any male nurses)
Being here the past few days, it seems like everyone knows Cookie and Patrick. Patrick’s friend and co-worker from the paper has been here and told us he has received calls and text messages from so many people. He wrote an editorial in this weeks Herald, and there is also a story about the High Tea on Saturday, which Cookie was suppose to sing at. There is also a wonderful picture of a group that helped in the community garden on what should have been Cookie and Patrick plot. They are calling it Patch’s patch.
I will write more when I can, my sister and I are just taking a break to shower and we will be returning to the hosital soon.
Jean
Monday, February 02, 2009 Late Evening
We spent the whole day by Patrick’s side, holding his hand, trying to keep his head cool, letting him know we are there. The nurses were able to give him a sponge bath AND they were able to give him a shave, of both his face and head. He looks like a sleeping Patrick. Cookie was able to lay down next to him for a while, and have some down time. He is resting comfortably right now and Cookie will spend the night with him. We will let you know more in the morning.
Monday, February 02, 2009
After 3 ½ relatively peaceful days in the hospital, Patch has taken a turn for the worse. We sit by his bed, hold his hand and tell him that we love him.
The prognosis at this point is 24 hours.
I appreciate all your good wishes in advance as I will be unable to respond to any calls, e-mails or visits at this time.
Love Cookie
PS. Cookie is holding up really well under the circumstances. Please continue to keep us all in your prayers as this will be one of Cookies hardest days. She will be surrounded by her family and we are so thankful that we are able to be with them now.
Cookie’s sister ~ Jean
Sunday, February 01, 2009
Thursday morning Patch fell and had to be transported to the local hospital. He was dehydrated, but also increased swelling caused paralyzation on his right side. A CT scan shows that the tumor has grown considerably and is causing much of his discomfort.
As we had discussed, when the situation came to the, Patch wanted no further action except to be kept comfortable, so we are keeping him company while his meds & liquids are put in introventiously.
Mostly he sleeps. Every so often he’ll answer a question or two, and show his beautiful baby blues.
My job right now is to love him and respect his wishes. On Monday, we will be transferring Patch to hospice, and we will update you on the location.
Cookie
PS My sister Jean Tjornhom will be helping to keep this page updated.
Blessings to you all.
Hospital Information:
Sierra Vista Hospital
T or C Rm 225
New Mexico
This is, I suppose, because I have not wanted to share with you where I have been in my mind.
After Christmas I fell into a black hole. I went to Christmas service at my Lutheran church and hade a overwhelming moment that it would be my last Christmas service.
I suppose I tried to kill myself, not with a gun, but by stopping to care about what happened to me. I went off my meds, and just wanted to see what would happen if I stopped trying.
I got worse, but I didn't die. I didn't think I would live to see the inauguration of our new president. That day had many things about it that were worthwhile to see. But best of all for me, was this phrase from Obama's inaugural speech;
"- a recognition on the part of every American, that we have duties to ourselves, our nation, and the world: Duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task."
So now I am back in the land of the living, and this Friday I get my next MRI scan, and we'll see where we are against this beast.
November 26
Happy Thanksgiving!
Here are a few words from Cookie about Sunday's concert:
When I got a phone call, asking me if a benefit concert would be okay, a Bach-only concert, I said: Great, as long as I could sing too. It just came out of me like it had been sitting there for years waiting to be said.
And so the rehearsals began, and I would come out afterwards feeling invigorated. I had more energy and felt like being around people more. I was reconnecting with a part of me I had given up since we came to New Mexico, my inner musician.
More rehearsals, this time with the musicians. Here I am again, working on the same level as other professional musicians. Something else I haven't done for years, and it started to give me back some of my old confidence.
Sunday comes - concert day. We have company visiting, and Patch has to get in to town early, to help out our pastor by preaching in his place. So I have no time to think about the concert coming up. No time to be nervous or worried.
Now it is 3 days later, and I am still floating on a cloud because of everyone's response. Just seeing the church full was wonderful, but to watch as the audience was carried away by the music, made me feel that we were giving something in return for all the love and support Patch and I have received.
It was a thrill to perform, and I hope to do much more of it in the future.
Cookie performing in the Bach Concert.
From Patch:
Thank you, Tom, Madelyn, Ruth, and Alex, for the inspiring therapy of music.
To OLPH Catholic Church and Fr. Tony Basso for making this special event possible.
To the Knights of Columbus, our ushers and hosts for the performance.
To the Herald Publishing Co. for advertising and promotion.
To the ladies of the 9 a.m. Mass Choir for their support and assistance.
And thank you, to all who came, and for your wonderful generosity.
Finally,
Thank you, Cookie.
Patch
November 25
Patch says:
On November 17, I got the brain scanned again.
It was a 'good' scan, as evidenced by the following report:
"Impression: Allowing for technical differences, there appears to be a stable post operative appearance to the left frontal postoperative field since the MRI exam 5 weeks ago, following recent resection of a GBM.
There is less mass-effect and swelling since the CT exam 3 months ago."
Of course, there is always the disclaimer:
"However, the presence of residual tumor at the margins should be considered."
November 1
On Saturday, Oct. 25 2008, the New Mexico Press Association awarded seven 'Better Newspaper' awards to the staff of the Truth or Consequences Herald .
These awards included "Best Column" honors for Patch Rose, for his One Year To Live? cancer articles. This is Rose's third "Best Column" award in as many years.
Congratulations to Herald Editor Carlos Padilla (Public Service and Sports Writing); Senior Staff Writer Tony A. Archuleta (Sports Writing); Herald reporter and Commercial Printing Manager Cindy Jo Harrison (Feature Photo); Herald columnist Dan Bern (Best Review—Statewide) and Legal/Display Advertising Director Loretta Tooley, for her award for excellence in Classified Advertisement.
October 16
Here are two snapshots from the Oct. 10, 2008 MRI of my brain.
This first image shows that about ten-percent of the space inside my skull has been compromised by the two tumor surgeries. The bright white line is the edge of the second tumor site; the white is either scar tissue from the Aug. 4 2008 surgery, or remaining tumor. Or both. The grey outside the tumor bed is swelling; the grey inside is fluid, which includes the radioactive contrast from the MRI procedure.
The second image is the view from a different angle, a view both Cookie and I find interesting and exceptional. My wife is forever seeing faces in unusual places, and this was no exception. We call this the "Baby Alien."
The contrast and some remaining air pockets seem to constitute a creature's head and face, while the surrounding brain matter suggests a tiny body, in a fetal position. We appear to have woken the little creature up with this snapshot; he or she has removed their thumb from their mouth while staring up in surprise at the sudden intrusion of sleep.
Clearly, it I wasn't psycho before brain cancer, I am now.
Listen to Carrie Hamblen's August 2, 2008 interview of Patch Rose on the "Images" radio program, from public radio station KRWG-FM in Las Cruces, New Mexico.
Listen to Patch Rose on "Images."
On Tuesday, Sept. 17, the BBC News "Talking America" radio program was in Truth or Consequences. Writer Jon Kelly interviewed Patch and Cookie Rose as part of the BBC's coverage on key national concerns, such as health care and the upcoming Presidential election.
"Fingers on Buzzers" by Jon Kelly
On Monday, Sept. 8, the New Mexico Press Association announced that the staff of the Truth or Consequences Herald collected six 'Better Newspaper' awards in 2008.
These awards included "Best Column" honors for Patch Rose, for his One Year To Live? cancer articles. This is Rose's third "Best Column" award in as many years.
Congratulations to Herald Editor Carlos Padilla (Public Service and Sports Writing); Senior Staff Writer Tony A. Archuleta (Sports Writing); Herald reporter and Commercial Printing Manager Cindy Jo Harrison (Feature Photo); Herald columnist Dan Bern (Best Review—Statewide) and Legal/Display Advertising Director Loretta Tooley, for her award for excellence in Classified Advertisement.
Printed from ABQjournal.com, a service of the Albuquerque Journal. (URL)
Saturday, September 06, 2008
TorC Columnist Gears Up for 2nd Cancer Fight
By Leslie Linthicum,
Journal Staff Writer
TRUTH or CONSEQUENCES — It had been a while since Patch Rose, a columnist for the local T or C Herald newspaper, had filed an update on his battle against brain cancer. Why tempt fate when the news was so good? It had been nearly three years since he was diagnosed with glioblastoma multiforme, an aggressive, incurable brain cancer known as GBM.
After treatment, Rose was very much alive and his quarterly MRIs were showing a clean noggin'. His series of Herald columns about living a life with an expiration date — One Year to Live? — had been published as a book, and Rose was happily back at work on the more mundane stories of small-town school board meetings and art shows.
Then on Aug. 4, Rose filed this update:
"I can't believe I have to take this cancer trip a second time. What stop did I miss the first time? Can I just get the postcard? I was THIS close to graduation from Cancer U., only to find out I'm being held back. And I don't even know why. Did I fail P.E.? Did my transcript get lost in the mail? I thought I'd graduated from GBM school Summa Cum Laude; instead, it's 'Lawdy, how come?'
So, damn it. Back to Cancer 101. The basics. What's the most basic, fundamental lesson I have learned from my cancer experience? Don't open suppository wrappers with your teeth.
Okay. But after that? Miracles Are Coming. Heck, they're already here."
One of those miracles, Rose explained over breakfast in TorC a week ago, was that he would fight to live another day. After surgery, radiation and chemotherapy that lasted for two years; after being handed a death sentence and doing the hard work of making his peace with it; and then, after allowing himself to believe he might actually live, Rose didn't think he could face the brain tumor fight again.
Rose, who turns 42 next week, explains his thoughts about dying: "I've been ready for a while, because they said I wasn't going to be here. It's not that I want to go, it's just that I'm not afraid. Either would be all right. My attitude was, it was supposed to be a year, it's now been almost three. I don't want to be greedy."
Rose's wife, Cookie, listens, and her hand shakes as she raises her coffee cup. It's harder for her.
They met in New York, in a Brooklyn church where Cookie was first soprano in the choir. They've been married for seven years, and it's a tight union. Rose's wedding ring is tattooed on his finger.
"We had talked about this for a long time, what we would do if this came back," Cookie said. "I get upset because I don't want to lose him, but I also don't want him to be here and not to be able to function and do the things he enjoys doing."
Then there was the matter of money. He and Cookie had blown through their savings and more on the first tumor. After the 80-20 split with their health insurance provider and drugs and travel and co-pays, they were out close to $50,000. Now neither of them had jobs — brain surgery has jumbled Rose's recall and writers can't write when the words won't come, and Cookie's years as a caregiver had left her mentally and physically exhausted and on a medical leave from her job as an X-ray tech. With no health insurance and no money, Rose was ready to throw in the towel and let GBM settle the score.
A few days after he was re-diagnosed, Rose took his MRI pictures along, and he and Cookie went into town for the monthly art gallery hop. Better let their friends know the bad news right away, he thought, and let the grieving begin. "All I was hoping for was solace, and prayers," Rose said.
A day later, phones were ringing, e-mails were bouncing and artists were organizing a benefit auction to raise money to fund Rose's fight. And it grew and grew. A restaurant lending its space. An auctioneer pitching in his services. And more than 100 people donating — everything from oil paintings to golf clubs to spa weekends to a microwave.
"Patch laid the groundwork for this to be a success," says Ruanna Waldrum, owner of a frame and art supply business in TorC, who helped organize the benefit. "It's because of him that everyone got on board."
The auction raised $12,000, a nice amount for a rural county of less than 13,000 people. More is needed to keep up the fight, and donations are being accepted via PayPal at www.patchrose.com and addressed to Patch Rose at the TorC Herald, 1204 N. Date, TorC, NM 87901.
Rose has spent the last three years focusing on his health, examining his life and writing it all down in dispatches filed with optimism and warmth. Now he's humbled that all that goodness is washing back on him.
"There are two things going on here and the less important thing is me," Rose says. "It's just amazing. People from all over the county, people from Hillsboro all the way practically down to Hatch, getting involved. I didn't realize how many people were listening."
Rose flew to Phoenix and had his second surgery. He's got a big scar across his bald head, he's started chemotherapy again and he has trouble finding the right words on occasion. He has no trouble articulating this: "The most important thing is that these people have gotten together and given us hope."
Rose has been concentrating lately on a quote from Ralph Waldo Emerson: "To know that even one person has breathed a little easier because you have lived; This is to have succeeded."
Rose knows from the phone calls and notes in response to his columns that he can chalk up his life as a success. And so he is ready to go. But the people in Truth or Consequences aren't ready to let him.
Rose's most recent column ended this way:
"A week ago, I was planning my funeral. Today, thanks to friends, I'm studying my old test papers, relearning the moves of the cancer chess board, and, strangest of all to me, I'm making a vow to all of my miracle workers, a vow I intend to keep: I promise you, I am going to graduate this time."
Book Excerpts From "One Year":
Awake.
Staring at ceiling. Beeps. Flickers. Nausea.
Wow. Good shit, bro. Is it legal?
Where am I?
Ah.
Sudden clarity. Post-op. They've cut open my head. Pulled out a wriggling, evil and hungry THING. Sliced it apart. Disposed of it. Re-sewed on my sawed off head. And sent me—here.
I am still here. Holy shit.
But how am I?
I take inventory. Blink. Swivel the eyes, the head. Ouch. Sore noggin. I bring my left hand to my left temple. Long string of metal staples running down my scalp. Okay. A zipper on the outside of my head; an egg-sized cavity inside. Cool. My wife has a new purse.
What about my right side? Surgeon said the cutting could paralyze that side.
Deep breath. Command right toes to wiggle.
Piggies wiggle.
Right leg swivels. Right fist clenches, each finger cascades in sequence. Bird finger still works. Excellent, excellent. Right shoulder swivels, in fact, everything works.
Thank you, sweet baby Jesus.
From "Miracles are Coming":
My post-cancer life is like a major motion picture. Some days have great joy: desert rainstorms, a pair of barking Chihuahuas, my wife's smile.
Some days contain tremendous agony: a mailbox stuffed with medical bills, the crushing fatigue of chemotherapy, the jangly stress of a press deadline. But always, always, my life is a great adventure.
Perhaps my life was always this way, but it took cancer to get me to see it. So, maybe, just maybe, cancer itself is a miracle?
God only knows what tomorrow will bring. Perhaps life, maybe death. Either way, my answer to the heartsick souls on the telephone line always remains the same.
Miracles are coming.
From "The Wearing of the Greens":
Late last week, a friend complimented me on my recent weight loss. He asked how much weight I'd dropped; thirty pounds, I said.
"Atkins or South Beach?" he asked.
"GBM Brain Tumor," I replied. "You either lose all your excess weight or die trying."
From "Beating the Day Terrors":
Because, you see, what I'm really afraid of is dying. Just like you. And that's what's making me angry.
Just like you.
But it's okay. Only the living feel anger. Only the living feel fear. And only the living—you and I—can do something about it. Like writing hate mail. Or submitting silly little cancer columns filled with strange, puffy words like "insouciant."
Or reading them.
Only the living can grow, and change. Only the living can forgive, and only the living can love. So, every day becomes a challenge. Every day is filled with questions.
"Are you growing? Are you changing? Are you doing what you must to survive? Do you forgive? Do you love?"
Or are you dead already?
From "How to Beat the Night Terrors":
Having a baby alien eat its way through your brain is not such a bad thing, at least not during the day.
There are, after all, so many distractions. The latest Scarlett Johansson DVD. The new Harry Potter book, 700 pages of diversion. Your wife's laugh, the purr of your tomcat, the bark of the dog at a passing truck.
All these things help you forget the very real battle going on inside your skull between the killing tumor and the half-brain you started out with, now reduced to a quarter.
But, at night? After the news has declared without hesitation that indeed things are much worse than they seem, the urge to surrender, to take every one of the little pink pills you got from the druggist and to sleep forever is quite irresistible. For it seems pointless to go on; night has fallen and there is no hope of sunrise.
You lay there, in the grave of night, cool beads pooling on your forehead, thinking about the future. You don't just selfishly think of yourself; images and memories of all who went before you sweep the dark ceiling. The smiles of the beloved, who fought and struggled and tried and lost, these crash into images of the beloved you will leave behind. It seems you've lived all your life without a clue, and now, still clueless, you're left to fight and struggle and try and lose, and wander, bewildered and alone.
Not much fun.
From "Cancer is Just Another Word for Life":
Truth was, I had finally become a man. I had faced my own DDay; I'd stormed the beaches of Cancer nation. I'd toughed out the daily slog of survival: the pills, the exercise, the radiation and the chemo, the hope and fear, the triumph and the worry.
Now, I was finally a man, a man aware that all of it could end tomorrow, so I'd best be true to myself and make the most of today.
So perhaps 'Cancer' is just another word for 'Life.' Perhaps so are the words 'Diabetes,' 'AIDS,' 'Heart Disease.' Maybe these words provide a map for one's life, a compass. A flashlight.
Maybe these words define a way of living that is truly living, not waiting, or fearing. Or dying.
So, with my new cancer flashlight and my ol' best girl by my side, I'm living.
I'm not waiting,
I'm not fearing and I'm not holding back in any way.
I'm moving ahead.
And afraid of the dark am I not.
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Patch's address to the crowd at the August 28 Benefit Auction at café BellaLuca:
"In many ways, these past two months have felt like an unending car wreck for Cookie and I. Since July 4, my wife and I have had a taste of every single human emotion; we have sampled life’s banquet table from both sides and every end.
Right now, what we feel more than anything is astounded. In fact, since we returned from Phoenix, Cookie and I have been trying to understand completely why all of this has come our way.
So, we have been asking people what they think Thursday night was all about.
One person told us our auction gave people a way they could help, to do something good, whoever they were.
Cookie’s brother said, 'It’s the grace of God.'
Someone else it was a great excuse for the whole town to hold a party.
Yet someone else said, 'It’s just love.'
Whatever you call it,
Whomever it comes from—
Thank you."
August 28
Thanks to everyone who made the Benefit Auction for Patch and Cookie a great success. Click here for photos.
August 28
Have 2 images from my most recent CT here. One is a side view showing where the bone was cut, and this lovely air bubble which cause much of my headaches. The other is a slice diagonally thru my head showing swelling (darker gray) and the same air in the other image. Notice the midline shift because of the swelling. So if I call you by someone elses name, it's because things are getting pushed around in there.
Tuesday, 2:30 pm 8/26
Hello everyone. He came back today. Where was he? In the land of headache and non functioning body parts. In a prone position in a dark room where even animals were not really a part of things too much. But today he woke up!
(ALL of him woke up, thank God) He was clear in speech and mind, able to get moving early so I could get to Silver City to resign. I am now a truly free agent. He still gets tired easy, but today is the first time he has been upright for more than 4 hours straight.
I will make sure he is well rested and up to the challenge of Thursday nights fun.
In spite of the rain here in Silver City, I can see a light at the end of this tunnel. I'll take what I can get.
Cookie
Sunday afternoon, 5 PM
How am I? Cookie says I am at 70%, I thought I was at 80%. I felt (and was) like 10% on Monday, so this is great progress.
I think I have a few more days before this last round of chemo wears off. Good thing, I need to be ready for an important appointment in Silver City on Tues. And then, of course, there's a little thing going on Thursday that I need to be at my best for.
Enjoying the country with the 'kids', and enjoying feeling better.
Patch and Cookie
August 20
It has been a doozy of a week since mon. Patch's migraines persisted, we went to the ER to make sure it wasn't a bleen, and found out he has an air bubble up there. (Normal post operative changes, blah blah blah). Doesn't take away his pain any.
He has been laid up in bed since then. We are in town so we can be close to help - of all sorts. Unfortunately, his speech and mobility have been affected, and he hasn't been able to eat solids at all. I am well - handling things, I hope, with grace under fire. No trouble to care for someone you love, no matter
how mundane the chore. But I'm learnng to try on new hats. Masseusse, financial organizer, as well as the usual chief cook and bottle washer.
We'll try to keep you all posted.
Cookie
August 15
A bad day. My old friend migraine has returned after a 3-year hiatus visiting other people's heads.
Something new, my right hand completely useless from the wrist down for over an hour. It waited for Cookie to come back home before conking out on me. Now, at least, she gets the remote.
I would be lost without your prayers and love, and the cats and dogs.
Patch
August 11
Patch says,
I've got a second round of Chemo Elbow.
And once again, it's my own fault.
I've been cocooning in our home in the desert, and I now understand why wounded soldiers fall in love with their nurses. Cookie has tended me day and night, plus I have the extra medicine in cat purrs in my ear and snaking Chihuahua tongue up my nostrils.
Saturday night, Cookie and I went into town for the art gallery exhibits and met so many friends and other well wishers. Add to that Sunday morning movies in bed and I have all I need to combat chemo brain.
But when one of Cookie's friends called Sunday afternoon and invited her to join a women's softball team, I leapt out from my cozy cocoon. I gathered baseball glove and Mets Jersey and joined Cookie on the softball field. I showed her the pinwheel warm-ups you do for your shoulder muscles before throwing a softball, and then she and I played catch before her field practice. All of this with my tumor-afflicted right arm.
Now, on Monday morning, I feel like an old softball that's been whacked out of the park one too many times.
But it was worth it, to see my busty nurse shag fly balls.
August 9
Greetings from Mr. & Mrs. Zipperhead.
It's Sat., around 10AM, and Cookie is writing this from my bedside. I'm resting to make sure I have enough energy to attend the hop tonight in T or C.
Some friends have exhibits we really want to see. So, if your around town, I'll be the bald one in the w/c.
There are so many emails and phone calls we still have to make to new and old friends. However, the chemo wafers have played Etch-a Sketch with my brain. So for now, we're sending this update to express our continued feelings of thanks, and amazement for the outpouring of love you all have shown. Thank you for being there.
Love,
Cookie and Patch
August 7
Coming Home on Angel Flight West.
August 4
Dear friends,
We started the day at 4:30 am heading to the hospital, and my sister Joan and I spent most of the rest waiting, as perhaps many of you have been.
Pre-op, as always was a breeze, but the surgery took 2 hours longer than we had anticipated, causing angst and anger. Finally at 2:30 PM we were allowed into the recovery room,
but Patch wasn't quite with us yet. The anesthesia hadn't quite worn off, and he was still feeling pain.
2 hours yet before we could see him again in the ICU, after a chest xray and a Cat scan to make sure things were ok. Finally, I got to talk to him, a few precious words. He speaks. He raised his arms to me, and even shared a little disappointment that Scarlett Johanson had not been among the phone calls to wish him well and tell him he was loved. He's alright.
I know the hardest part of this battle is still ahead, for both of us, but I won't put him thru this torture one more time.
Tomorrow, he will probably dictate a message for me to pass on to you all, but for tonight, I say Thank You, each and everyone who has cared and shown us both such support. I may have cried a dozen times today, but I still could not have made it without knowing there will be people behind me. And to my sister Joan who flew in from NY, well, I would have been uninformed and unable to inform. She kept me on a steady path. Thanks for being more than just a sister. Thanks for being a friend, Joan.
I'm exhausted, so I'm signing off for tonight. I'll get back to y'all tomorrow, 8/5/08, Patch's 3rd re-birthday.
Much love,
Cookie
August 4
Dear Friends, my family,
In June of 2000, my only birth sister, Ellen, died.
She was the second member of my family to die in their early forties. The first: my father, Lester.
A week after Ellen died, she appeared to me in a dream. She walked up to me, smiled and said one word:
"Leap."
When I woke up, I knew exactly what my sister meant. I proposed to Cookie that day.
Two weeks later, Cookie and I went skydiving with Dan, my best friend since eighth grade, and his wife Helen, my second best friend since marrying Dan. It was a tandem jump; each one of us wore an experienced jumper as a backpack.
Cookie, always less fearful than I, jumped up into the void first. I did all I could to slow my own approach to the airplane's wide open door, but my skydiving-happy instructor bulled me right to the edge. As I looked down, and down, and down at the Earth, above the howling winds I heard my instructor's command in my ear.
"Leap!"
In twelve hours, I'll be on the table. By the time you read this, it may all have been decided. And it's going to be a fight: Last Friday's brain scan showed just how much of my brain is being crushed by the tumor. The enemy has returned stronger, wiser. Hungrier. And I am three years older. I am now in my early forties.
As I write this, and I think of who I am, and where I've been and where I'm going, I wonder: What the truest lesson I've learned from my life?
Surrender.
I don't mean the surrender you find at the end of a gun. I mean the surrender of a child in their mother's arms. The knowledge that whatever happens, it's going to be okay.
A leap of faith.
I think of all the souls holding me up, I feel their caresses, and their murmurs that it will all be okay. I see my sister's smile, my father's wink. I feel my mother's arms.
So I leap.
And I as do, I offer up one small prayer. For me. For you. For everyone.
I pray:
I hope.
I love.
I leap.
I surrender.
August 2
A letter from within the riptide
It's early Saturday morning. Cookie sleeps still, and I am in the lobby of our Phoenix hotel, surfing the Internet and floundering in a riptide of despair that threatens to overtake me.
It seems my brain cancer operation is happening just in time. Everything is becoming a challenge. It's hard to write. My right hand, which corresponds with the left, tumored side of my brain, pays me no heed. It's like a friendly but untrained dog that likes to wander off and sniff people in inappropriate places. As a result, I have to sit at the far end of the lobby's Internet bar.
I'm having to say things three times to get the right word out. Yesterday, at the hospital, I was looking right at a nurse's name badge: "Karen," and calling her 'Crone, carom, chrome." Good thing she wasn't named Prissy.
As I sit in the hotel lobby, people zoom recklessly into the parking lot, late for their court-ordered traffic safety class. Despite some of the finest roads anywhere, the residents of Phoenix all drive as if they have brain tumors. Or maybe they're suffering from the effects of brain tumor chemotherapy. I've been researching my new chemotherapy, the one they'll give me during surgery, the last line of defense modern medicine has against brain cancer. Here's one Internet entry:
Carmustine or BCNU is a mustard gas-related compound, used in the treatment of several types of brain cancer including glioblastoma multiforme. Bone marrow may take 6 weeks to recover function following treatment with carmustine. Marrow and pulmonary toxicities are a function of lifetime cumulative dose.
Or in terms my hung-over friends in the traffic class can understand, side effects of using this World War One chemical agent as a treatment for brain cancer include leukemia and scarred lungs.
What is it that comedian Chris Rock says? "There's no money in a cure?"
There is a teacher in California swimming with me in the undertow. She emailed me a few months ago, asking permission to use my column, 'A Woman Like Velma,' as part of her curriculum for a writing class she teaches as a community college. Today, she emailed, wished me luck on my upcoming surgery, and then said a family member was just diagnosed with multiple tumors. Apparently, my slim orange volume has been passed around their hospital's waiting room.
"You and Cookie have become a part of our lives," she wrote.
There's more to say, but the lobby has become crowded with pissed off bad desert drivers and I'm afraid my wandering digits will get me in trouble.
Thank you all, for being there.
You have all become a part of our lives.
Love,
Patch and Cookie
August 1
Dear Friends and Family,
Cookie and I are overwhelmed by the love and support you have shown us in the last month, and especially in the last few days. Y'all are testing my writing skills, by challenging me every day to find new ways to say 'Thank you.'
We are in our hotel in Phoenix and are well. Yesterday was a exhausting but unforgettable day. A charity organization called "Angel Flight West" picked Cookie and me up at the TorC airport and flew us to Phoenix in two different prop planes. Cookie got a quick flying lesson, just in case something happened to the pilot. I think she was a bit disappointed that nothing bad did happen -- she was ready to fly!
For me, the best part the flights--no dancing around in my socks at the airport.
Met with the surgeon yesterday and he and I repeated the conversation we had in Nov. 05, even down to the part about average expected life spans. Nice to show some things never change.
Later today, I will enter the MRI tube to take a final picture of "My l'il buddy Gilligan." Then, a couple days rest before we go in and evict the unwanted tenant from my cranium. There's already one useless organism in my skull, not to mention Jimmy Hoffa.
So this time, Cookie and I say to say "Tusen Takk" for caring about so much. Bless you!
Patch and Cookie
July 30, 2008
Dear Friends and Family,
Well, we're packing for Phoenix!
I don't know how much we'll be in touch after tomorrow, but my friends here in TorC will put regular updates on the website: www.patchrose.com.
It appears I am receiving as many prayers as the Giants did in the last Super Bowl. I'll do my best to win.
Much love and we'll be in touch soon.
Patch (and Cookie)