In March of 09 I moved the archive of health updates about my journey with multiple myeloma from Care Pages to Word Press. This migration came at a turning point in my treatment. My recovery following a stem cell transplant in August of 08 had stabilized. I was cleared to return to work. Best of all, I was drug free.
Accordingly, I needed to release my friends and family from the expectation of what had become bi-weekly reports on my health. However, in the preceding ten months I’d developed a relationship with numerous strangers from around the globe who were dealing with multiple myeloma, a kind of sub rosa support group. Because of them, I intend to keep writing of what living the life is like for me, be it in remission or relapse. We have much to share.
Moving the updates was a tedious task. It required copying and pasting; editing and formatting; selecting photos; and adding links. Word Press is not perfect, but it is damn good, much like my remission. What resulted, I believe, is a more attractive and accessible site with tools conducive to writing and reading.
Nonetheless, a significant omission troubled me. There were over 600 comments from readers. These messages helped give me new perspectives on my illness. The comments acted as healing gestures, little candles lit in my honor that say more about the writer than they do me.
I could not possibly pass along every message. I selected some to give new readers a sense of the generosity, the tenderness, and caring that came my way. I pulled memorable comments from the archive at Care Pages. The first selection totaled over 26,000 words!
The final product contains a potpourri. I saved much of the poetry. I also kept quirkier comments even when the sentiment was coded in the history of a relationship others might not decipher. I saved all the comments of one individual. She supported me throughout the worst of my transplant ordeal while she was, herself, dying from an allogenic transplant that did not take. This is my candle for Leslie Smith. (No relation)
Hundreds of others were left on the cutting room floor. All are precious…
Posted Jun 15, 2008, 7:31pm
Ed and I just wanted to send our best wishes and support. We will get updates from Nikki and this wonderful community you have set up here. We have a friend & neighbor that spent the last year going through something similar. If you think it would be of any help I am sure he would be happy to join this page or email you directly with some of his experiences. He has survived this ordeal and is on the other side of it and is doing well. As I read your messages and just remember that as much as you were concerned that you would tell someone at the wrong time or were stumbling through this in some way, I’m sure I’m not alone in saying that most of us on this message board are twice as worried that we will say something wrong which would be upsetting in some way. We can only imagine what an incredibly difficult time you and your family are going through and it is hard to find the words to say that we’re all sorry you have to go through it and that we all wish you well. Just know that we are all here for you whenever you feel like sharing and even when you don’t. Be strong and know too that there is a golf course in Lake Sherwood waiting for you when you’re feeling better.
Debbie Herman Ojai CA
Posted Jun 16, 2008 9:05am
John, Happy post Fathers Day. I would have dropped you a line yesterday but I was watching the Open. I don’t know about you, but Tiger’s feat yesterday just confirms my previous suspicions, and that’s that he has to be a friggen alien. I first became wary when I watched him play in a tournament that Stanford hosted. He eagled all three par fives and the most club he hit was a 7 IRON. Come on! Then he goes on and shatters the Masters record, the US Open record, the PGA and I believe the British Open record. But yesterday playing on one leg, I don’t think so. For the integrity of the game there needs to be an investigation. Of course there have been other sightings; Michael Jordan, Peyton Manning, and of course the kid you and Tom played with at the Stanford Invitational that hit a 1 IRON out of divot.
But I digress. By now you guys are probably settled into your “suite”. However I’m still not quite sure why a research center would pick Seattle for their home base. It is the only city I know that everyone looks like they just walked out of bar. NO TAN. One would think they would want a location a little more bright and cheery. Palm Springs would be nice. Of course I’m probably biased. They only significant time I spent in the area was basic training at FT Lewis. I was there two weeks before I saw Mt Rainier. The drill order of the day was, “put your rain gear on; take your rain gear off”. Then there were the nice strolls around the Puget Sound carrying a 50 lb pack and a friggen rifle. But then I was a “loopo” so that was like a walk in the park for me. I use to tell my fellow trainees this is nothing. Try packing two trunks up the 18th hill at Cal Club after you have been up all night seeing if you could drink all the beer in So City.
Anyway John, I hope you guys are all settled in and you had a restful night. I know you have some big days ahead of you and Barbara and I look forward to your updates.
Posted Jun 18, 2008 11:19am
Hope you’re settled in now. Been thinking about you guys. It’s eleventy-two trillion degrees here in Phoenix right now and Pearl complains when I ask her to take me out. It’s hard to be a big black dog in the Phoenix summer. At least she doesn’t complain when I put on her boots but the sight of her prissy little feet make strangers stop us more often to comment on how “cute” she is. Cute is an ugly word to a noble Doberman. LOL. Take care.
Posted Jun 19, 2008 12:02am
John Smith, AKA “pigeon knuckles”,
Glad to hear you’re somewhat settled in and we’re glad we were all able to get together at Tom’s…It was a good visit…Just remember if there’s anything you might need, don’t forget I’ll call Tom and he’ll get it for you!!!
Love u bro
Butch AKA “honey ears”
PS: Dianne too
Posted Jun 19, 2008 5:19pm
My name is Leslie and I noticed that you, or your wife, posted a message on my CarePage. I also met your wife, Marilyn, today during a yoga class at SCCA. I believe she was seated behind me so I should ask her how I looked during all those exercises?
I’ve been staying at PGH since March 12th. I had a matched unrelated donor stem cell transplant for my Ph+ ALL on April 18th. I believe that puts me at Day +62. I wanted to offer my support if you should ever need it. I’m sure you and your wife have done your research and I don’t possess any “inside” info on the transplant process, but if you should ever have a question, please feel free to ask. The nurses and staff at UW are phenomenal and I think you’ll be very pleased with your decision to have a transplant within their facilities. Also, if you have any questions about PGH or the surrounding area, I’d be more than happy to help. I will keep you and your family in my thoughts. The sun is shining here in Seattle today so I hope you get to enjoy it a bit!
Posted Jun 20, 2008 12:31am
Today I read some Basho… And these were my favorites:
Traveling this high
delighted by violets.
From every direction,
Cherry blossom petals blow
Into Lake Biwa.
I’m a wanderer,
So let that be my name:
The first winter rain.
I hope you get some sunshine soon so you can enjoy the rooftop garden. We have now managed 2 full days without rain. It likely won’t last but it was sure nice to see the sun again. I had almost forgotten what blue sky looked like. Today I got outside on the patio for a bit. I had a nice view of the mountains, an over-caffeinated latte and a book of haiku. It was a good afternoon.
My love to you and Marilyn,
OJ (and Nikolai and Dmitri…and Graham too)
Posted Jun 23, 2008 10:49pm
I miss my Postmaster! It sounds like your world has been a merry-go-round since I last saw you–and probably not so merry. When I went to the P.O. today, I was surprised to see that you weren’t there. I hadn’t heard a word about your situation. How can someone so healthy be sick???
I am so sorry, but am glad you’re being proactive about the treatment and I’m sure you will come out on top. I really appreciated reading yours and Marilyn’s updates. This is sure one area I know nothing about so I like the detail.
Frank and I will be thinking of you and we’ll keep you both and your family in our prayers.
Posted Jun 28, 2008 11:14pm
A Few More Haiku
Here are three from Basho that I like:
And bring to men a chance to rest
From looking at the moon.
This bright harvest moon
Keeps me walking all night long
Around the little pond.
Wet with morning dew
And splotched with mud, the melon
Looks especially cool.
Posted Jul 1, 2008 1:29am
Dear John & Marilyn,
Well, I went to the P.O. today to mail a package, anticipating seeing you. Saw the Care Page message there on the wall, and quickly in my mind, I thought, well, perhaps you were donating stem cells for Noah or something like that. Asked, and learned you are sick. Now this is just not fair! Tim & I will keep you in our thoughts and prayers. I have not had time to look at all the information here on this website. But I will read up soon and post again.
Stay strong and positive. God has seen you through difficult times, and He’s there to do it again.
Hope things go well for you this week and you get some encouraging news.
Posted Jun 29, 2008 6:14pm
This is the fun week!
Hi John and Marilyn,
It sounds like you are starting your two-week work-up for the transplant–lots of silly tests, including the pulmonary function test. Did you have that one yet? A cheerleader (and don’t worry Marilyn, she is dressed as a nurse, not an actual cheerleader) comes with the pulmonary function test. How could you not want to show-off your lung capacity when someone is cheering you on?
Anyway, I’ll be thinking of you this week and hopefully pass you in the halls of SCCA. Again, it sounds like you’ve got a good handle on what goes on around here but if you have any questions, I’d be more than happy to help (or at least attempt at helping). You’ll stay in my thoughts and prayers … And you’re going to come out stronger and better than you already are …both of you!
Posted Jun 29, 2008 1:11pm
John, John, John…
Hello John & Marilyn: The video “good blood, bad blood” you sent me floored me. My God, John Smith… why are you sick… why did this cancer pick you my friend? You are the advocate for us – you are the brave heart for SCI… You are the voice that pleads for others. Now here you are somewhat caught in the grim reaper’s crosshairs. Life is a tough one. It isn’t a game with rules or rewards – it is a road with too many twists and turns for the average stomach to handle. I hope the stem cells work their magic. My mind is a blank as for what to tell you. Asking why is useless… so is placing blame… your body will lose in the end – EVERY body does, but from this point on place your mind in warrior mode. Earth is not our ending point… you know that – our soul, our Chi, our core travels on… but as for now – FIGHT it! Embrace life but fight this disease… I’m sorry fate has turned the tables on you. You don’t deserve this heartache. You do not deserve this agony. But here you are – face to face with it. STAND brave, walk tall… never let it get the best of your thoughts. Angel’s are near my friend – always near – in the shadows of the rain, the brightness of the sun, they stand ready to catch us when we fall… time after time they prop us up. They’ve held me for decades… write down your pain, bleed it on to the paper… and FIGHT… you promised me a hike in Hood River one day – I plan on collecting…
LOVE, RESPECT, ADMIRATION,
Posted Jun 29, 2008 11:25am
Hi John and Marilyn;
I wanted to do a quick note as I head north later today or tomorrow depending on a few issues. As Dorothy says in the Wizard of Oz, “There is no place like home.” I take comfort in reading that your apartment is very home like with all the details well thought out. I am certain, anything missed will be identified by Marilyn and passed along.
Reading Marilyn’s post, I realize I have never thought about food and infection and the need to be careful. Marilyn, you are detailed, so I am sure that the two of you will weather this fine together.
John, I do hope you continue your writings both publicly as well as the private thoughts. I see you interviewing your fellow patients much as you have the under 30 crowd with SCI. May you take comfort in your poetry, writings and family and friends.
I know that this coming week is a “big one”. I trust that you have soaked up every ounce of information and knowledge and you go forward into the world of stem cells.
John, who would have known that your expertise and knowledge on the subject would serve you and your family in more than one manner. You will be in my thoughts and prayers this week with boundless positive energy going your way. May you find your inner calm, both John and Marilyn during the next few weeks.
Ike and Noah, you are in my thoughts as well.
Posted Jul 1, 2008 12:48pm
I love to read what you write, no matter what subject. This time I particularly responded to your sharing of the details that Katherine wants to be called Katie. Yes, these little intimacies, details of life, turn out to be life itself, and I am so glad that you are conscious of them, conscious that you are alive, and so PRESENT in all that is happening right now. Sorry about the crabby caregiver, but tennis is tennis and I guess you have to let it have its way. She’ll probably be nicer when she’s actually administering medicine.
Posted Jul 2, 2008 10:48pm
I just came aboard.
Hey, I didn’t know about this. I mean, Janet told me about it, but being told something by one’s wife is not the same as knowing about it, is it? Now I know about it, and in fact I just got to gobble up ten of your delicious expositions at one sitting. By the way, when you are a carpenter, the “postage stamp” metaphor becomes “needing a good foundation if you are going to build a house.” Countless well-meaning practitioners over the years have made something easier for me to understand by using that simple metaphor.
I know now that you are just starting up; I had been keeping track via Janet’s oral updates, but now I am firmly seated in the peanut gallery and I am stomping and rooting. I await your further reports.
Posted Jul 4, 2008 11:36am
Thought you were just on vacation!?!
Hi John and Marilyn;
It finally occurred to me to ask, “Where’s John?” and was unhappy to hear that you were enduring a forced “vacation.” I haven’t read all of your chronicles of this journey yet, but of the few I did, terrifically informative and witty. We all hope for your speedy recovery and return to the Valley. We miss you!
Posted Jul 8, 2008 10:45pm
Wishing you well…
Hi John and Marilyn;
My Mom and I wanted to let you know we enjoyed your company at the game this past 4th. What a great way to spend the day and it was lovely speaking with you afterwards.
John, I hope the treatment is going well and there haven’t been any surprises. And remember, if you need anything, please don’t hesitate to ask!
Thinking of you,
Leslie & Susan
Posted Jul 8, 2008 6:02pm
You were missing…
“Where’s John?” became a family topic. Both my mother and I had been in the busy P.O., and hadn’t seen you, or had an opportunity to ask “the new guy.” So, we were coming up with our own possibilities: A long vacation? A sabbatical? Retirement? A position at some other postal facility? (We didn’t like that one at all.)
But I had seen Curley when I was there, and noticed that “John” was still the name on my receipt. We eventually learned that our guesses were all wrong, and that you were on medical leave and in Seattle. (We never know what’s going on in the community….) So, now we are waiting for you to get back!
Mother didn’t want to set up a Care Page account; I told her that I’d send you her good wishes. We’re all hoping the treatments go swiftly and well, and that you’re soon back on the local links and hiking trails. I’m glad you’re doing a blog…
Davinne, Mike, Dorinne & Mitchell
Posted Jul 6, 2008 9:01pm
Man, the things I don’t know about my brothers! Where on earth did pigeon knuckles come from? Anyways, I’ll be thinking of you this week as you begin your chemotherapy. I hope your side effects are mild and that you are able to keep active. It sounds like Seattle’s a pretty nice place to be. This is the first weekend since the beginning of June that it hasn’t rained substantially here in Wisconsin!
Posted Jul 6, 2008 8:30pm
Hey Pigeon Knuckles!!! Sounds like you’re doing really good… Curious to hear how the results of your cardiogram went??? Not much more to add other than everything is okay here and Larry should be home within a couple days now… We just got back from the mountains and there’s smoke everywhere down here in CA, not good breathing weather outside… Take care and we send our love.
“Honey Ears” and Dianne
Posted Jul 12, 2008 12:57am
Love and Hugs;
I tried to leave a message the other night but must have hit a wrong button and it didn’t post. That message was from Buckwheat and me. She also misses you as you miss her; she gives out some very mournful meows occasionally I do believe she is calling to you. This morning she took a great late sleep in with me. The house is still standing and the flowers are growing and the wildflowers are great and the driveway is smooth and level. I think of you so many times a day and am sending you all my most positive energy. You are an amazing man and I am sure you are up for your new journey.
Lots of loveBarb and Buckwheat
Posted Jul 11, 2008 5:15pm
You make me brave, John.
What a fine world it is when doctors can focus so finely on our insides and we can stay focused on what we love. Here’s a bit of Mary Oliver to say what I can’t.
Some Things The World Gave
Times in the morning early
when it rained and the long gray
buildings came forward from darkness
offering their windows for light.
Evenings out there on the plains
when sunset donated farms
that yearned so far to the west that the world
centered there and bowed down.
A teacher at a country school
walking home past a great marsh
where ducks came gliding in –
she saw the boy out hunting and waved.
Silence on a hill where the path ended
and then the forest below
moving in one long whisper
as evening touched the leaves.
Shelter in winter that day –
a storm coming, but in the lee
of an island in a cover with friends –
oh, little bright cup of sun.
Posted Jul 13, 2008 3:12pm
Let’s hear it for pain meds!
Well, I sure am sorry the pain you were feeling the other night wasn’t from the Neupogen shots! But, I am thankful you are making use of the pain meds. I don’t think I did that enough as I tried to prove I was “tough.” To whom I was proving that too, I don’t know, but I’ve since learned a good pain medication is nothing to be ashamed of taking.
Anyway, you will know the aches of Neupogen when it happens. If you’ve ever experienced restless leg syndrome, it’s similar to that. And yes, it can keep you up at night so keep something to help you sleep close by.
I thank you and Marilyn for your kind words and support during this difficult time. I’m taking comfort in the thought that my Grandma is now my Guardian Angel and protecting me. I’m sure she’s keeping guard over you too. She always had the best seat in the house so anything you need, just ask her. 🙂
Thanks again and I’m sure I’ll see you around PGH or SCCA soon!
Posted Jul 13, 2008 3:37pm
Love to hear about your Seattle ramblings Some quiet day take yourselves to Green lake to stroll around — or down to Elliott Bay books –or onto the UW campus while it’s quiet and peaceful.
I keep meaning to tell you, John, that you’re a stunning writer, serious wow-ness in every post.
Posted Jul 13, 2008 6:48pm
Hi John & Marilyn;
I read your blog whenever it shows up and must say that you have quite a way w/ words, John. I could feel my own bones in the latest description. Just want you to know that I (we) so many of us here in Pdale are sending healing thoughts, wishes and prayers.
Saw a huge plume of smoke off to the north near Mt Adams this noon and have now heard that it is a 100-acre wildfire in old and dead forest–hope they can lasso it. It looks like quite the thunderhead right now. I don’t envy those fire fighters-but sure appreciate them!
Take Care & love & Sunshine to both of you!
Posted Jul 14, 2008 1:07pm
Well, Jeeze, John, that’s exactly what I would have thought, too. Don’t you just hate it when you are being the best teacher’s pet ever, waving your hand in the air, “I know, I know”, and then when they call on you it turns out to have been a trick question? You were robbed, and are handling it with your typical good humor and grace. I am glad the oxycodone was handy to put the misconstrued symptoms to rest, and I want to assure you that you are still my No.1 favorite science-adventure writer.
Posted Jul 14, 2008 12:46pm
Now that I finally have my computer figured out, I am following your progress with utter fascination. Your grasp of the science involved is very impressive and the narratives by you and Marilyn are interesting and very well written. You certainly have the start of a good book. Your admiration for the treatment you are receiving indicates you are getting the best possible chance. Just be careful that you don’t come home reborn as a Husky. The doors are still open at the post office, so we’re getting’ by, John. Keep up the good work you went up there to do.
Posted Jul 16, 2008 10:59pm
She does not complain or worry or pity… Marilyn! Under the circumstances, avoiding those three tar pits would seem to be a full time job and then some. Well done. You deserve a poem too . . .
How necessary it is to have opinions! I think the spotted trout
lilies are satisfied, standing a few inches above the earth. I
think serenity is not something you just find in the world,
like a plum tree, holding up its white petals.
The violets, along the river, are opening their blue faces, like
small dark lanterns.
The green mosses, being so many, are as good as brawny.
How important it is to walk along, not in haste but slowly,
looking at everything and calling out
Yes! No! The
swan, for all his pomp, his robes of grass and petals, wants
only to be allowed to live on the nameless pond. The catbrier
is without fault. The water thrushes, down among the sloppy
rocks, are going crazy with happiness. Imagination is better
than a sharp instrument. To pay attention, this is our endless
and proper work.
I hope you’re both enjoying the weather, at least sometimes. It doesn’t get much better than this.
Posted Jul 15, 2008 11:24pm
The hard stuff…
My extreme sympathy, I mean extreme sympathy, for the difficult physical passage, and as always kudos for your not whining, which is gale-force. Were it I you would be learning something about whining, and the outer limits thereof. Meanwhile be ever so prudent, don’t eat dirt no matter what the other kids are doing, have Thai peanut sauce on saltines at home, slipping them in past your surgical mask. And, since you asked, my suggested hype for the diet book is: NEUPO the POUNDS away with Dr. Smith’s HEMO-CHEMO DIET! Be careful and be well…
Posted Jul 15, 2008 9:55pm
Haven’t lost it…
Hi John & Marilyn;
Well you might be losing your WBC (white blood cells- hope I’m catching onto the lingo) but you certainly have not lost your sense of humor, your eloquence with words, and I bet you’re not such a bad patient. But I guess only Marilyn (your hairdresser?) knows for sure 🙂
The VW with 2 flat tires reminds me of going into Warren Lake way back in the 70’s across the lower Kingsley dike and up the rutted, boulder studded road. But we made it. Rather like The Little Engine That Could; ‘ I think I can, I think I can.’ On the other side of this, you can say, ‘I thought I could, I thought I could’ Just stay on the track. You’re doing great!! And we’ll all bring up the rear. We’re all along for the ride. It is not a joyride, and we’re sorry it is at times miserable for you. And I do want to add we really haven’t heard you complain much at all, if any!! We’re still thinking about you both. Maybe you can take a winter vacation and your essay will be on a lighter note.
Ricki & Tim
Posted Jul 15, 2008 5;14pm
I hope for an update every day, feeling more connected than I would have thought possible. In that classic John Smith style, you are translating this complex procedure into terms that all of us laypeople can understand and helping us laugh, sigh and hope all the while.
Much love from the Hottliebs
Posted Jul 17, 2008 8;17pm
Hi John and Marilyn;
I wanted to let you know how much the town of Odell is following your progress. There are many, many well-wishers that stop by regularly to ask about the latest. You are very loved here and they miss you greatly. Many people without computers ask me to pass along their good wishes, thoughts and prayers. Your blog is on the counter for those who wish to read it, and many do. I hope the good vibes many are sending your way are helping with the difficult process as you progress.
We are doing our best to hold down the fort here. It has been a good learning experience for me trying to keep your stamp counter warm for your return. What a fantastic community here in Odell! Very nice people. Your office has been a fun challenge. I’m trying not to mess it up for you. LOL.
Take care, the 2 back-up discs are done, so time for the trek home.
Posted Jul 17, 2008 4:29pm
Missing you and OPB radio station at the PO!
I’m following along, cyber-experiencing your long, difficult journey. I’m remembering some of our quick, quiet talks about kids and getting them-and ourselves-through the dark nights of unforeseen challenges. You will never know how you were the right person, at the right time; giving some much needed personal advice and assurances.
If only I could do the same back for you! Sending you the best, healing thoughts possible.
Posted Jul 20, 2008 6:07pm
We are watching all you’re posting and are very relieved to hear that your white blood count is rising we just hope your fever goes away and you return to normal. I know you watched the British Open. It was very entertaining. I was hoping Norman could hold on however the old guy returned to his normal game. He will just have to survive with his private airplane, two yachts new wife and billions of dollars (life is tough).
Hang in there John we are thinking of you.
Tom, Karen, Adrienne, Luca, & Enzo
Posted Jul 20, 2008 10:37am
I just wanted to wish you and Marilyn a good Sunday. I hope today’s procedures go well and that your infection and fever continue to improve.
Today I am being brave and going to attempt the beach. I will let you know how it goes. I was in a tiny town called Bamfield yesterday. A very charming and extremely eccentric place. Possibly because it’s so isolated but whatever the reason, you know I am attracted to bizarre things so I loved it lol.
Actually I had been there before very briefly when I hiked the west coast trail. We started in Bamfield. But I didn’t have much time to look around because we were late getting there due to a missed ferry (I got us lost in Vancouver…even though the trans-Canada highway from Calgary pretty much goes straight through to the ferry place with no turns and end at the ferry terminal. Figures I would find a way to get lost lol).
Anyways this town is on 2 sides of a penninsula and a boardwalk connected all the houses and businesses on one side. At one point there is a lovely little garden in front of a concrete wall painted by the local school children. We stopped to admire the art work and flowers. Then I noticed the cat dishes among the flowers. Many many cat dishes…around 25 or so. Then we took a closer look and saw the cats hanging out on the beach and sleeping among the docks and in the trees.
A local walked by and asked with a laugh if we liked their cats. I asked how many he had. He said “Around 18 or so.” He then motioned for me to look a little further into the garden. And there were two little wooden cathouses, complete with signs.
The story of the cats is the local postmaster used to take in every stray cat she found. At one point it was over 30 cats. She took good care of them, but she did it all herself. When she died a few years ago at 84 (after working right up until a few months before her death), the locals all chipped in to get the cats that hadn’t been fixed spayed and neutered. They then tried to find homes for as many as they could. For the ones that couldn’t be (or didn’t want to be lol) adopted, they built the cathouses and they now take turns feeding the cats on a weekly rotation. A local craft store has a donation box and both the townspeople and tourists donate. This goes towards food and vet costs. The little garden with the houses and the cat dishes was meant to be a memorial to the postmaster, who was truly beloved in the town and had been doing the job for something like 50 years. Her cats were not always as popular as she had been lol, but they seem to have won over the hearts of most of the town.
It would be a perfect story for “This American Life” lol.
I got some pictures of the cats and the garden and the cathouses. Also of the post office. I took that one just for you because I think it has to be one of the smallest post offices in Canada, if not the smallest. It’s tiny and perched perilously across one part of the boardwalk.
I hope I haven’t upset you or annoyed you with that story. Just hoped I could make you smile.
Please hang in there John.
Posted Jul 23, 2008 6:03pm
Hello from Hoboken!
Well John, it sounds like you kicked some stem cell harvesting butt! Congrats! Now we need you to kick some infection butt …once they give you the direct targeting antibiotic for the infection, I’m sure you’ll be out of the hospital in no time. Even though I haven’t written in a few days, I have been checking the updates from good ole Hoboken, New Jersey.
Since I’ve been home I’ve spent my days going back and forth between my doctor’s office and NYU Medical Center (that’s where I received treatment before heading to Seattle). I caused quite a commotion while at NYUMC yesterday–they tried to set me up with 2 units of A positive blood (my old blood type) instead of O positive (my donor’s blood type–of which I mostly am now). They only do autologus transplants there so everyone was relatively unsure of my demands for O positive blood. Luckily my doctor faxed over some paperwork from Seattle that stated I may only receive O positive blood transfusions now. I was just happy I was right and not causing a big fuss for no reason. Anyway, I won’t complain about the all the doctor visits and trips to the hospital–it’s good to be home and makes me feel “closely monitored” much like the care we receive through SCCA and UW.
If you’re interested…while I was at UW I asked for an Internet cable. The hook up is right on the wall and the connection was pretty good.
Thanks for keeping us updated! I love reading your entries! Keep up the hard work-both of you!
Posted Jul 22, 2008 12:19am
Hi there John;
John Lozowski told me about this page, so I’ve been perusing it. Thank God I took that Human anatomy and physiology class, or I would be totally lost in the medical lingo.
Last Friday Mitch, Borrego, Roger Barry, Kip Miller and I teamed up in the Last Ft. Dalles Rodeo scramble at The Dalles Country Club. We won! Each of us won a pair of cowboy boots. I haven’t sent in for mine yet, but they ought to go with my wardrobe of shorts and golf shirts quite nicely.
Of course you have been in my thoughts frequently, I’m trying to send some mojo your way. I saw Ike at Old Pals, and that was fun. I think you and he ought to team up there next year. I think the greens were the WORST I’ve ever seen them. Hard to believe we used to play there so often. Dave said they’re “coming around”.
Rob Matson won our club championship this year. Willis Bullard actually led after two rounds, but faded the third day. Jake Morgan was second, and Max Gorman third. Mitch was next, then Mason. Matson shot 76, 77, and 67!! I was an also ran at 82, 78, 80.
I’m looking forward to your return to the weekend festivities one of these days.
Posted Jul 21, 2008 11:59pm
Your house is a very, very fine house (with one cat in the yard)
John & Marilyn: I went to Barb’s party at your house Sunday night. I haven’t been to your place in so long I drove right by the road and had to turn around. Wish you both could have been there! I’ve been reading all your postings here and keeping up on what’s going on and so my thoughts have been with you. You do have a very sweet cat, John, and lovely flowers in your garden. I’m hoping for the best on your test tomorrow. And hoping it’ll all be over soon and we’ll find you at home again on Dee Flat.
Posted Jul 21, 2008 7:32pm
Out of the Loop
Hey John and Marilyn!
Sue sent me this link; I haven’t known what was going on. But I HAVE had a bronchoscope…trust me, piece of cake. If you’ve been having bone marrow removed, I think the bronch. may actually be pleasant, by comparison! Glad to hear that John was swimming in the necessary cells. Sorry, though, that you 2 are back in the one-step-forward, one-step-back world that we all know is the disease-fighting process. At least you guys know the drill. It must be hard on those that haven’t learned to expect the unexpected.
I love you both. I have total faith in you as a team, and as a family. (Errr, I kinda hero-worship the Smith’s, each and every one. I hope to be reincarnated as a Smith, also.) Just keep keeping on!
Posted Jul 26, 2008 8:19am
Good to read your words and thoughts again and to know that you are home at the apartment. Please save energy as I know in my heart the CRPA will be passed in Congress this weekend, in large part to your and Marilyn’s leadership, push and efforts. Keep resting, gathering strength and preparing mentally and physically for the return of that beautiful harvest. If you were flowers, I imagine huge sunflowers overflowing with seeds.
Hugs to you both,
Posted Jul 25, 2008 9:18pm
Hi from Eugene
I’ve gone back and read the updates from the beginning, so as to better understand what you’re going through before corresponding. One of my soccer kids had a bone marrow transplant for leukemia over twenty years ago (at the Fred Hutchinson Center in Seattle). Your procedure sounds very similar, as are many of the issues, but I’m impressed with how far they’ve come with such things, so it’s apparent you’re in good hands (especially with Marilyn on hand!) and in the right place. Unfortunately, little setbacks (like the occasional infections) seem common, but I’m glad to hear that you’re progressing through them. Great news on the stem cell harvest. I’m confident that, with your positive attitude and overall physical health, you’re going to do just fine. Lots of folks pulling for you — me included! Just thought you should know. Anyway, keep up the good work, and I’ll look forward to following your progress.
Posted Jul 26, 2008 7:08pm
You have every right to be feeling a little flat. You have had a tough couple of weeks. You are shagging grounders off several batters at once and nothing is getting by you. Ever since you were diagnosed you have been helping a lot of us, mostly your peers, as we encounter and begin to grapple with this mortality thing — ick! — in our own lives. Your clear and honest narrative is a warm-up for the unpleasant and possibly scary passage that will yet have to be made by all those of us who are not run over by a truck. So your bald white head is not really like a scarecrow at all, more like a beacon. You are an usher in the Church of Awareness. Thank you.
Posted Jul 26, 2008 6:53pm
Hi John and Marilyn;
Hugh and I well know that you are doing this as a team (just as we did a year ago) and so wanted to send our warm wishes to both of you. Sounds like you’ve had some real ups and downs in recent weeks. Hang in there…and know that lots of folks here in the valley are pulling for you. It’s a long road ahead, but the two of you together can do it. We are so glad that you found “Kitchen Table Wisdom” helpful and that you were taking it to Seattle with you. Rachel’s website and work in the cancer support field is really astounding. We’ll follow your progress with your updates and know that we wish you both the best. Sounds like you are working with great people at the hospital who will do all they can to help you navigate your way to a successful outcome.
Linda and Hugh McMahan
Posted Jul 26, 2008 6:40pm
Love your way.
We are home again and catching up on the news. Thanks for sharing. I’m glad you’re gaining on this. At least your hair will grow back. My follicles continue to descend through my scalp and come out my nose and ears. Holler when you’re ready to be tormented with a chessboard! Have board, will travel.
Posted Jul 31, 2008 5:27pm
Loss of Innocence…Why does literature suggest that “loss of innocence” happens once, often in the teens, or when men go to war, or when any of us first have our trust betrayed. In fact, you remind us, that it happens throughout our lifetime. On our way, let’s hope, to something less painful. Wisdom? Surrender?
Thanks, again, for sharing.
Posted Aug 4, 2008 1:19pm
Christie forwarded your care page to me. I wanted you to know that we are thinking about you and sending positive energy and thoughts. We hope the pneumonia is all gone and that you can proceed with your transplant.
You ask a sobering question about what we will do with the next years of our lives. It is hard to keep the balance and perspective to be grateful and satisfied with life, as we know it. Thanks for the reminder!
Ginny (and Steve)
Posted Aug 4, 2008 10:32am
I would like to grow up just like you John!
I couldn’t quite find the right words I thought I wanted to say that’s why I haven’t left a message for a while. But this morning, I do.
I have been here always visiting you and Marilyn. And as I told Muir and Jenny yesterday, I couldn’t leave a message because I keep looking for the right words. What am I going to do with the next 27 years (well, not quite – I am way older than the young man) of my life? ” I am going to be just like John”.
Love to you and Marilyn.
“Auntie” Kim (a.k.a. PS Form 835)
Posted Aug 4, 2008 6:38am
I feel like a bit if a voyeur as I read some of your blogs during a sleepless night. I am a friend of Ron Cohen’s and after a walk with him a week ago; he forwarded me your site. Why you ask? Two things come to mind – I am a cat lover who is involved in a local cat rescue in Hood River, and currently, I have two adult foster cats and three, eight-week old kittens in my care. Lots of fun and rewarding to see them grow and change as they gain trust after hard starts in life. The other common link is that my mom had multiple myeloma, It is not a very common cancer-so I was drawn to write you. So glad to hear that treatment is progressing well and that you are at one of the best hospitals for treating multiple myeloma. Thanks for sharing your daily life with others in such a candid way.
Now back to cats- if you would like pictures of some of our rescue kittens and cats, I could email pics of the little critters-just looking at these guys lowers my blood pressure. I loved your picture of Buckwheat-very distinctive guy!
Best to you,
Posted Aug 2, 2008 1:49pm
The whole time I’ve kept up with what’s going on. Ricki keeps me well updated. Though I don’t say much, I feel a lot. Which takes me back to the times we had several conversations in the post office and I learned your character. One helluva animal! In my mind the will to survive surpasses anything. I’ve been in some pretty precarious predicaments where I thought I was going down for the last time and a hand from heaven reached out and either stopped me or pulled me out of the icy waters. I had a will to survive and I was not going to die. And neither are you, so get that in your head. God knows where you’re at, at all times. And He’s the Man. So you just gotta take this ride and it will be over soon. Check with you later.
Posted Aug 1, 2008 1:56am
I know Tim & I are just casual acquaintances. I mean we haven’t gone hiking, haven’t socialized, are not neighbors etc. with you & Marilyn, but your plight has touched us. Your words are wrenching, and although I am not going through any life threatening condition, I can see how eloquent that passage CAN be, coming from your honest dialog, very moving and thought provoking.
What would I do with the next 27 years of my life? Well that puts me at age 82. I think what we SHOULD do is not be the workaholics that we’ve been. Do some stargazing, go to the painted hills, visit our girls, maybe go see Tim’s property in Arizona, and cruise through Utah and see some sights and hike some trails like you & Marilyn recently did. It’s so easy and convenient to work hard and not take real time for some play. Taking life and tomorrow for granted. Thanks for posing the question.
Posted Aug 4, 2008 6:53pm
My father was diagnosed with MM in October 07, my parents at the time choose not to let my sisters and I know of his MM due to my 11-year-old niece who was undergoing synovial sarcoma cancer treatment at the time. (She had the tumor removed in Nov. 07 and is doing great). My parents told us in January 08 and my search on the web began for information. My niece has a care page (Team Kim) so my searches through the care pages lead me to you. I wanted to let you know your explanation of MM was very helpful and easy to understand. I have used your definition to help explain to family and friends. I understand every patient with MM is treated based upon what will work for them. I continue to follow your path and wish the best for you. My father is fighting his own battle with the help of doctors at Ceadar’s in LA. Thank you for your courage and inspiring updates you are a wonderful person and yes, I agree we cannot be denied the dignity of hope and ultimately what course of treatment we choose to make is our own, but what a difficult decision it can be.
Thank you and God Bless,
Posted Aug 7, 2008 4:12pm
Dear Marilyn and John;
I am so sorry that I have been late in telling you how I feel about your problems. I am sick at heart, but so glad that you know the Lord and that he is in charge of our lives even the bad as well as the good. My son Mitchell will be in City of Hope by the 22nd of August when he will take his first chemo treatment for lymphoma. And I think of you John and what you are going through. You are a very special person, and I’m glad to call you my friend. And for you Marilyn I just want you to know that I am feeling your difficulty for John. You’ve going through so much. My computer has been acting up, so I have not been able to write to you until now.
My love to you both,
P.S. My thoughts and prayers also include Noah.
Posted Aug 19, 2008 12:42pm
We have been thinking of you and praying for you and your family. Sorry it has taken so long to write to you. Odell continues to be Odell: A very unique place with good people. I check in with Curly as often as I can. I worked summer school at Mid Valley this summer. We took a field trip to the Post Office. For the first time in twenty-six years of receiving my mail there, I saw the other side of the mailboxes. I made sure to introduce Curly to the 23 six years olds. Curly quickly came to the conclusion that she belonged outside! We miss you and await your return to good health and Odell. We will continue to keep you and your family in our prayers.
Posted Aug 18, 2008 8:42pm
Hi John & Marilyn;
Despite the fact I haven’t written in a bit does not mean I haven’t been thinking of you both. I was so happy to read that you had a chance to return home for a bit. Nothing helps heal the mind, body and soul quite like the familiarity of your personal surroundings and wilderness. Maybe you could bottle up some of that fresh air and send it my way.
It sounds like you’ve been doing well and enjoying all that Seattle has to offer as well as visiting with family and friends while you’re home. Give SCCA a little wave hello from me next time you’re there. Be well.
Posted Aug 20, 2008 7:49am
Good to hear of your steady strengthening, the rise in your spirits, and your happiness at being home for a while. As lifelong shoe dog, all I can counsel you on are the benefits of wearing shoes.
Wonderful pix from the annual Tillie birthday bash. It wouldn’t be a birthday without the Smiths being there and giving her the usual goofy card. Tils loved seeing you. Your changed appearance challenged her emotions, but she was firm in her understanding of the process. She is just so used to you and Mare being her surrogate parents that she wants that stability. I think my dad’s death was also a blow, so she’s probably counting on you being around a long time to come.
Besides my dad passing on, I lost a great friend and my aunt in about a two-month period. So as I track your encounters with cancer I find myself wondering about mortality, and, to be frank, have a hard time seeing the world with the cast of characters I love. I’m thinking of you and sending out the best vibes I can from the edge of the Namibian Desert.
Posted Aug 24, 2008 9:44pm
Marilyn probably already told you that my dad lived for 12 years after his diagnosis, and he was diagnosed much later, after he already had a tumor. So I’m betting you’ll live longer than that!
Posted Aug 24, 2008 4:42pm
Well John it looks like there is no turning back now. I will be thinking of you every day this week and considering what stage of the treatment you are getting and sending you lots of positive healing energy. I had to prepare a presentation about dealing with stress last week and one of the suggestions was finding at least one thing that you are grateful for every day. I am so grateful that you chose to share with all of us your thoughts and experiences as you take us down this road that you are traveling. As far as that mattress, I think we need to have a big slumber party when you return to the Dee.
Love to you and Marilyn
Christie and Ron
Posted Aug 23, 2008 1:16pm
Does that mean you went for a tempurpedic?
At the end of my 3-hour interview with the law firm on Thursday, one woman asked me what I wanted her to know about me that had not already come out in the interview. “Resiliency,” I said. “I’ve been through a lot in my life. I’ve traveled far and wide and been through more personal/physical hardship in 28 years than most people experience in a lifetime.” But I haven’t let it dampen my fighting spirit; my pursuit of success and happiness. Resiliency, I think it’s pretty obvious where I get it.
Posted Aug 23, 2008 11:01am
Go buy that mattress and green bananas too. I was talking with Anne Edwards last night about you. Her dad as you know was diagnosed with MM SEVENTEEN years ago. At 86 he still with us. She said because of his age at diagnosis he was not a transplant candidate. Keep your good attitude! Prayers are coming your way.
Posted Aug 23, 2008 9:16am
If attitude plays a role, and we all know it does, you will be a survivor! None of us, of course, knows how long we have. Really, it’s just this moment and making the most of it. I know you don’t like to hear that you’re an inspiration, but sorry, you are.
Posted Aug 28, 2008 6:39am
It’s 3 am. I couldn’t sleep. It has been a long night. A racing mind and other things keeping me up. Then I read this and saw the picture. And it made me feel much better. Actually the update and the picture both made me smile. It had been a pretty miserable day for me. I don’t know that I needed a smile. Thank you John.
I am not sure that is how it is supposed to work. I logged on here guessing that it had been a rough day for you with the chemo. Despite my mood, I had hoped I might find something small to write to you that might help you feel better. Even if in a temporary and tiny way. Yet you were the one giving me comfort.
I think I am messing this up, but I am pretty sure you know what I am trying to say. Despite what I wrote on the postcard that day, and the fact I have a bottle just like the one I sent to you sitting beside my bed, I think I have maybe started to slip at bit on remembering the small things myself. So you have reminded me of that all-important epiphany I myself had, yet might have forgotten about this week.
I wish I could give you a big hug. My departure for Vancouver is going to be slightly delayed due to the return of the osteo in my foot. But I am still very much hoping we will be able to coordinate a visit. How long that delay is will depend on what course of treatment I select. Which I am having a hard time doing. But I am less worried and less scared about it today. Things will unfold as they will and I will cope with it. As I see you doing.
And I will remember to focus on those little things: My cat climbing up on my bed to nuzzle my cheek. My 18 month old niece grinning and calling me “Tee Tee” when she barrels into my apartment (We are not sure where “Tee Tee” came from but I like the name. I say barrel because her last checkup showed she was in the 98th percentile of weight for all kids her age. Ouch. She also outweighs her twin brother by a significant margin lol). The plant that stubbornly keeps growing on the balcony despite the fact that everybody forgets to water it. The double rainbow I saw on the weekend. Graham going to Starbucks at 6 am to drop a small fortune on a latte for me. My 85-year-old neighbor beaming with pride as he showed me the first pictures of his first great grandson. Friends I have never met in person but mean the world to me. The list is longer than I realize when I take the time to think about it.
Last thought. I saw the “Laughing Policeman” book beside the bottle of little things and that made me smile. Martin Beck! I am not sure that I have read all the books. But I have read many and have seen all the movies that I could find. I have a thing for Scandinavian movies. And that happily led me to my first Martin Beck movie then to the books. Have I told you this story before? Wow. See its stuff like this why we became such fast friends 🙂
I am not sure where Life of Pi is. I also sent some movies. You haven’t mentioned them so I am going to guess they haven’t come yet. It has been several weeks. I wonder where they are 😦 Oh well. I am sure they must be on their way. It’s not much but I hope there will be something among them that you like. I also included the audio book of Life of Pi in case that might be something you are interested in instead of reading the book. I myself have had little luck with audio books (no attention span for them) but I continue to try to get to like them.
Super long email, huh? Sorry. Didn’t intend it to be lol. But it managed to fill a couple of sleepless hours, which I needed. Of course sleeping would probably be better. Oh well. Writing is always a good thing. And writing to a friend is even better. I think I will go to sleep now. It’s 5:37 am and I actually am finally starting to feel tired. I hope you have a good Thursday.
Posted Aug 26, 2008 4:05pm
Ugh – my sympathies. Once I started chemo, I never had an Rx taken off my list. They are only added, to deal with side effects. And THOSE drugs have side effects, so it goes on and on. (Dex is dreadful; unfortunately, so is life without it.)
You’ve probably read on my blog some of the least helpful things people have said to me. The most helpful things? “I’m so sorry you have to go through this,” and “Tell me what I can do to help.”
I am working on filling my heart with gratitude and forgiveness. I’m rarely successful, but it is a wonderful distraction. Good luck, and keep writing.
Posted Aug 26, 2008 1:56am
Yes, the little things are important, vital, because they make up the big thing — our life. We just keep adding up the adventures, the scenery, and the moments of tenderness, sadness, and revelation until we can’t do the math anymore. The 15 year mattress is a good omen because it portends that you will be with us for a while, observing, enjoying, doing the math. Irv got sick so fast that neither he nor we had sufficient time to check all the calculations, review all the experiences logged in over the years. You have that time to think, observe, and talk with us. That’s a great blessing.
Posted Aug 28, 2008 6:39pm
Congratulations on your Day 1 of infusion! How many days of infusions do you receive? And does that mean you have multiple “birthdays?” Us allotransplant patients are allowed to claim our infusion day as a birthday …I figure auto transplant patients should be given the same privilege. Regardless, every year from this point on you should celebrate your infusion days as birthdays! I’d make a birthday list for you for everyone to read and know what to send you, but I’m guessing dresses from J Crew and a King Charles Cavalier puppy aren’t on your list. Instead, I’ll send good vibrations from the East Coast to the West. Every cancer survivor wishes to keep thriving, so I’ll wish that for you too.
Always thinking and saying prayers for you and your family,
Posted Aug 28, 2008 10:19am
Thanks as always,
John ~ has this thing made you extra eloquent, or was that always part of the small-town postmaster with a cat behind the counter?
I’m in Anaheim this morning, getting ready to go to Keirstead’s lab and begin what I hope will be a process that turns into a book someday. It’s a nervous place to be, and it’s good to open the laptop and find your measured, clear-voiced self.
I want you to live.
Here’s some Mary for your morning ~
Toward The Space Age
We must begin to catch hold of everything
around us, for nobody knows what we
may need. We have to carry along
the air, even; and the weight we once
thought a burden turns out to form
the pulse of our life and the compass for our brain.
Colors balance our fears, and existence
begins to clog unless our thoughts
can occur unwatched and let a fountain of essential silliness
out through our dreams.
And oh I hope we can still arrange
for the wind to blow, and occasionally
some kind of shock to occur, like rain,
and stray adventures no one cares about –
harmless love, immoderate guffaws on corners,
families crawling around the front room growling,
being bears in the piano cave.
Posted Aug 28, 2008 4:10pm
John, I just took time to look through the photo gallery. I gotta tell you, you look a heck of a lot better bald than I did!
Posted Aug 31, 2008 2:45pm
I don’t know what happened but… suddenly I’m able to access your page! I’ll see if I can do the special magic on Linda’s too.
So chemo-head huh? Let’s see… cures for chemo-head… the main hope and cure is waking up with “chemo-head” which puts you in the position of being able to take the rest of the cure rather than not, so looks like you are in good shape. The rest of it goes like this… eat your vegetables, and keep waking up! Of course you need to sleep a lot so that you can keep waking up. So do a lot of that too. Also it’s supposed to help that we’re thinking of you, which we are… So hang in there bro!
Posted Aug 30, 2008 7:43pm
Hi Marilyn thanks for the update. John is very much in our thoughts this week as we await what we hope is positive news. We know this next couple of weeks is going to be nerve racking. We are hoping for a full and rapid recovery.
Hang in there.
Tom & Karen
Posted Sep 4, 2008 7:01pm
I’m so glad to read everything is going as planned and as the docs and nurses at SCCA expect. That’s always a good sign. And John, I must say, walking 99 steps to your apartment is quite a feat! I thought walking uphill to the clinic and back was exercise enough. You’re putting me to shame! Keep up the exercise though–it’s good for you, as I’m sure you already know. I’m always thinking and praying for you. Stay strong and be well!
Posted Sep 5, 2008 12:49pm
Hi Marilyn and John;
Coming so lately to these pages, I feel like a spectator at a Marathon that is posted near the finish line… I’ve missed the start and the many miles in between… but there can be nothing but respect for the perseverance and the strength it has taken for both of you to get this far.
I am cheering for you -fervently,
Posted Sep 5, 2008 11:19am
Hey Marilyn and John;
Thank God the unknown sometimes offers treasures, as encountering it seems to be the only thing we know for sure. I love to read your updates.
Posted Sep 10, 2008 12:45am
Something I used to repeat . . .
O, Love that will not let us go
I rest my weary life in thee
That in thine ocean depths
Its flow may richer, fuller, be.
There was comfort in the notion of resting somehow inside a love that would not fail. I want that comfort for you, as much as I want this to really be the ugliest part. You deserve to get some juice out of these lovely September days.
Posted Sep 9, 2008 3:00pm
I feel like I am holding my breath. I hope yesterday WAS the worst and you’re on your way back now.
Posted Sep 9, 2008 8:30am
Receive my thoughts and cheerful be
For all the trying scenes you see
Be patient while in time you stay
And keep the faith from day to day.
Posted Sep 16, 2008 10:46pm
jsut wnaetd to say hi and thnaks for shriang tihs life chnaigng expreiecne and so mnay preosnal thoguhts and feliengs. snice the frist day i met you, wlel, mabye the sceond, yo’vue been a role moedl for me. dno’t froegt, you owe me a ruond at indain cerek. and i wnat to coleclt. pelase, feel bteter soon. jhnony blaltaa p.s. and d’not bohter to crroect my splielng tihs tmie.
Posted Sep 15, 2008 7:14pm
Ok. I just can’t believe I didn’t know about all this pain + suffering you two have been going through! Where have I been? YOU are in my prayers now, so I’m sure you’re going to feel better soon 🙂
Gosh. When I went to the Parkdale PO window and Judy + Marty were discussing your great blogging, I had to ask what it was all about!!?? Only to find out about your cancer treatment. Yikes! Now that I know how to find you guys, I’ll try to keep up with you for sure. You both write so well………..Keep it up!
1000 kisses + hugs))))
Posted Sep 12, 2008 10:48pm
Dear John, We read every post and wish to thank you and Marilyn for posting & taking us along with you on this endeavor. We have you in our thoughts & prayers. You still bring a smile to my face every time I go to the Odell Post Office and see the Petunias our front. I took a picture of them and posted it on a page of our website that goes nowhere. They still look good for nearly mid-September.
Your cheering squad in lavender;
Joel & Diane
Posted Sep 12, 2008 9:53pm
Hi John and Marilyn;
Well, it sounds like you’re both experiencing the norms of what happens to your brain, energy and psyche during this crazy journey. So, rest assured you’re not much different than anyone else. It’s re-assuring to know that John remains quick-witted. I’ve never been one for quick remarks and I’m even slower now! As for the chemo-brain, there are portions of days I forget entirely…I figure if I can’t remember them, they must not have been that important, right? Just something to make myself feel better about what’s going on upstairs.
I’m glad to hear you’re enjoying some relatively brainless movie watching. I know you have a better appreciation for independent films but may I suggest the movie “Something About Mary,” (also starring Ben Stiller, along with Cameron Diaz and Matt Dillon). “Dodgeball,” with Ben Stiller, is also pretty funny. And if you’re up for something considered a little more “collegiate” humor, “Old School” (starring Will Ferrell, Vince Vaughn, Luke Wilson and Ellen Pompeo) can make for some decent laughs. Oh, and if you haven’t seen “Love Actually,” I highly recommend that movie. It’s set around the holiday times but it’s the feel good movie of 2004–I watch it all year round.
I can also suggest mindless TV programs …yes, I admit, I’ve got too much time on my hands. Well, I never stop thinking of you and am glad to hear things are within the norm. I pray for a speedy recovery of counts and continued health for you and your family!
Posted Sep 12, 2008 11:45am
Dear John and Marilyn;
Hope each day is better and that you numbers are climbing soon. Yes, laughter is the best medicine. So, here are some good jokes I have heard lately (other than the republican convention speeches!):
Two blondes were sitting outside at night and one turned to the other and said “I wonder which is closer, the moon or Florida?” and the other said. “The moon silly, you can’t see Florida from here!”
A blonde was pulled over by the highway patrol for speeding. The officer asked to see her Drivers License. The blonde replied “You guys need to make up your minds, the officer yesterday said I couldn’t get my license back.”
On the airplane on his way back to Rome, the Pope was doing a crossword puzzle. After a while, he turned the bishop sitting next to him and said, “What’s a four letter word ending in “unt” which means “woman?” The bishop said, “Did you try ‘aunt?’” The Pope said, “Mmmm. Do you have an eraser?”
Love to all!!!
Posted Sep 12, 2008 10:05am
Love and hugs from your Healdsburg pals, Linda and Greta. Marilyn is so right; laughter works miracles! XXX
Posted Sep 12, 2008 12:10am
John and Marilyn – Tuesday in a car-load of women heading off to our first City league match of the season – you were remembered and we all are cheering you on.
As Ralph Waldo Emerson said “What lies behind us and what lies before us are tiny matters compared to what lies within us.” John’s humor is a great example of this.
Posted Sep 12, 2008 12:10am
Hi John and Marilyn,
This is the first I’ve written on your Care Page, though I’ve been reading every post you make. My whole family and I are fully with you, behind you, beside you as you walk through this.
So in the spirit of your post, here’s a corny baseball joke for you:
Johnny Damon, Derek Jeter and Alex Rodriguez were together in a plane. Damon looked at Jeter, laughed, and said, “You know, I could throw a $1000 bill out the window and make someone very happy!”
So Jeter shrugged his shoulders and replied, “I could throw ten $100 bills out the window and make ten people very happy!”
Then Rodriguez chimed in, ” I could throw 100 $10 bills out the window and make one hundred people happy!”
Hearing this, the pilot leaned over to the co-pilot and said, “You know, I could throw those three jokers out the window and make 150 million people very happy!”
Posted Sep 11, 2008 10:21pm
The chemo brain could last a few months. When I got home from Duke after my SCT, I was apathetic and lethargic. All I did was lie on the couch. It’s gotten better in the last year. I think what I’m trying to say is that it might get worse before it gets better.
Posted Sep 13, 2008 12:31pm
Hi John and Marilyn;
I continue to read your updates that have been fascinating, edifying, heart-rending, etc. I know you’ve probably lived a healthy life, yet this happens to you. I on the other hand have not — smoking cigarettes on and off my whole life. Because of your fight, I quit 18 days ago and have gone through unpleasant withdrawals. But, when I’m feeling deprived and grumpy, I think about your courage and fight. Thank you so much for sharing with us — you give us all a little more strength to accomplish things we thought we couldn’t.
Fondly and with Best Wishes for a Healthy You,
Posted Sep 17, 2008 2:36am
Well, well, well… bargaining for a date to go home… sounds very familiar! I’m glad you took the initiative and have no doubt you can reach your goals. I remember feeling like I had stepped on too many people’s toes bargaining for release dates and I felt like I was offending the nurses and doctors because they had been right about everything from the tiniest of an infection to where I could find the best tasting hamburger. In the end though, like everyone else in your life, the nurses and doctors just want to see you happy and healthy and will do their best to accommodate you both.
It sounds like you’ve already got a good start on reaching your goals and it’s great to know your counts are within the “normal” range. I’ll be sending gallons of wishes for plenty of liquids to come your way. Keep up the great work and keep your eye on that car ride home the 27th!
Posted Sep 18, 2008 10:10pm
I sat tonight and read all of your daily messages and am in awe of what you have gone through and wonder if I would be up to it. I can only say that I hope it continues to go well for you and that you will be home soon. if there is anything that I can do once you’re home let me know.
We held a retirement party for Trudy at our house and some of the old crew were here and there was a lot on talk about the good old days when we worked together. I won’t bore you with the details but remember that you were well liked. I say a little pray for you and know that you are in my thoughts.
Posted Oct 7, 2008 1:09pm
I am so glad that you are feeling lucky. As an old coach though, I gotta tell you, “Go out there and BE lucky!”
Love, Mike and Teri
Posted Sep 24, 2008 11:23am
I liked your good blood bad blood show. I actually liked it. I think you are a good writer. I stopped by the post office a day or two ago to ship a care package to my son in the San Juan Island. Gladys still looks after the cat on long weekends. Take care my friend.
Tim from Odell
Posted Sep 20, 2008 2:12am
Thank you John for sharing the video, everything was very touching. Of course we miss seeing you at the PO. I water the flowers and talk to Curley and think about how you used to listen to such lovely music while working! Praying for your safe return.
Posted Sep 19, 2008 7:55pm
I watched your video on You Tube. It was very eloquent. But I just don’t like that t-shirt!! I hope you reach your goal of coming home to Dee and the beautiful Hood River Valley next Saturday!! The weather is turning cooler so perhaps the trees will be in all their colorful red and gold regalia in celebration of your homecoming.
Posted Sep 25, 2008 5:28am
Well, not only did you achieve your goal but also you’re doing it a day early! I shouldn’t have guessed anything less. I wish you safe travel this weekend and warm greetings with your friends, families, pets and the wilderness. Sounds like everything’s a go!
And I forgot… HAPPY BIRTHDAY JOHN!
I hope we’ll keep in touch.
Posted Sep 30, 2008 6:00am
I hope you and Marilyn are enjoying your time at home. It’s nice to get settled back into your favorite chair and recognize the familiar surroundings outside your windows. And thank you for the description of how the docs removed your Hickman catheter. I still have mine and am still dreading the day it will be removed. The words “old-fashioned tractor pull” and “with all his might” are more of a scare than “spinal tap” or “bone marrow biopsy” to me. I’m assuming I’ll need to beg for an anesthetic when mine is removed. It’s either that or they strap me to a table because I will try to run.
Back to congratulating you on your return home… And like I said, I hope this message finds you and Marilyn doing well, feeling healthy, and enjoying plenty of laughs with friends and family. I’ll keep thinking of you…
Posted Sep 26, 2008 1:38pm
T-shirt or not, I hope you’re able to feel the cocoon of virtual hugs your friends are wrapping you in over the next several months. We’re looking forward to hearing how the sweet balm of home does its work on your bored and battered body. And for the record, I thought you were quite a charming dinner companion last night, even if you did have to discretely look away while Kevin and I gobbled down our massive desserts.
The Seattle contingent will miss you. Savor the peaceful days ahead and know that we’ll be thinking of you.
Posted Oct 13, 2008 1:10pm
I agree with so many people here: I love to read your writing. I appreciate all your thoughtful depth and thank you for your wonderful postings. I think the hardest part of your situation, since you have been such a disciplined, important contributor to your family and society is to not be able to keep all that going. By now, since I am writing so long after you posted, you have probably figured out that you have to be really easy on yourself: give yourself permission to not do all those other things. It is truly OK to be idle and take time to think. It is totally fine to just sit and contemplate and dream. This is your occupation for right now. And, you might as well consider meditating on strengthening all those–would they be T and B-cells?? Skye and I are thinking about you, Marilyn and the boys so often.
We love you all very much,
Posted Oct 9, 2008 9:11am
Marilyn and I talked a little about yoga. If you were interested, I would love to volunteer my services. I could come to your house to work with you. Yoga could help you maintain flexibility, balance and strength while you’re healing and it’s a great stress reliever. We would, of course, start with a very gentle practice. I would love to have the experience, so you’d be doing me a favor also. If you’re interested in giving it a try, let me know.
Posted Oct 7, 2008 10:53am
A year is so long, yet so short. It seems even longer when you don’t know the outcome, too. Yet none of us do. We delude ourselves into thinking we have control. I’ve been going to Al-Anon. They have a million platitudes for those times you’re out of control. Let Go and Let God (nearly impossible for me.) The ever-popular One Day at a Time. Easy Does It. First Things First. Clichés, and like all clichés, apt. I wish you healing and patience, John. I remember how slowwwww healing from sci was, and that business of not knowing how it will all work out could drive a saint insane. But I’m thrilled and impressed you can walk 2 miles! I guess it’s a learning experience, and they tend to be painful. May your time glide by smoothly, and your plasma cells retreat back to whence they came. We care, John. Love to you and the fam.
Posted Oct 16, 2008 9:27pm
You never cease to amaze me with your writing. People are always telling me I should write a book about my experience and use excerpts from my Care Page posts but seriously, I can’t compete with you. So, you take on writing a book (you were looking for a hobby, right?) and I’ll do something along the lines of a comic book or children’s book. How’s that sound? That way we won’t be competing on the same New York Times Best Seller’s List. You really have a gift for captivating what I’m assuming most cancer patients experience but cannot put into words.
And as for the baldness…let it be said (from a younger woman) that you are handsome, with or without hair. I’m sure Marilyn would agree ten-fold. And tell her not to come beat me up for saying that, ha-ha. I understand being “vain” about hair and looks, etc. I sometimes look at pictures of myself from before my diagnosis and I don’t even recognize who I’m looking at in the mirror. I try not to let it affect me, as I know my hair and shape of my face will return to normal some day, but it’s not easy. All the wigs and expensive make-up don’t make me look like I used to but at least I have the option to “dress up.” Maybe you should experiment with some other hats …cowboy hats are very cool and Stetson hats are very regal looking. Or maybe you can find a black top hat–Lincoln style and walk with a cane. Now I’m just being silly but a little laughter never hurt anyone.
I’m glad you’re getting out for long walks. The fresh air must be so relaxing and is most certainly aiding in your healing process. I’m thinking of you and your family and you know, I’m still jealous of all that wilderness and fresh air of the Pacific Northwest. Give my best to Marilyn and your boys. Continue to walk and seriously, try some new hats. Could be fun…
Praying for continued health for you and your family.
(This was my friend Leslie’s final message. Her cancer relapsed aggressively. She died in mid-December.)
Posted Oct 16, 2008 6:44pm
I know *exactly* what you mean, John. I had surrendered much of my vanity the last year: I quit coloring my hair, going from rich auburn to “more salt than pepper.” Then I went from shoulder length the chin length to Sharon-Stone-short. Still, it didn’t really prepare me for total baldness! It is shocking, a bit scary, and a fair reflection of how I feel.
A few months ago, someone in my support group said, “I am more than my cancer.” I am not…yet. But I look forward to being able to say that someday. (I’m at about Day +22.)
I continue to send kind thoughts, healing vibes, good wishes.
Posted Oct 15, 2008 9:58am
It’s odd. You and I have undergone the same basic experience, yet you manage to write all the thoughts and feelings I’ve felt over the last two years. Our inner perspectives may be similar but our expression of them is quite different.
Posted Oct 14, 2008 11:09pm
You tell your story so picture perfect. It’s almost like being in your shoes but of course, not. I know the feeling of walking along smooth trails and paying no mind to the step of the foot, and the freedom THAT gives to limitless expansive thought. You really should keep up this writing and compile a book; perhaps branch into poetry?? Anyway happy trails to you as you walk your rectangles, and hopefully the red vines still taste as sweet.
Posted Nov 3, 2008 7:14am
Thanks for inviting me to your blog, been missing you at our usual meeting place. I read most of your journal, difficult times. I’m glad you are able to get out and walk some, lonesome as it might feel. Also glad you have found a group to share mutual feelings and experiences with; I am sure they are the better for it. You’re an über caring person, your words healing and inspiring. Be well, my friend.
Posted Nov 2, 2008 2:37am
I read this update of yours on La Cootina’s blog, which is how I found out about you and your blog, in fact. I finally decided to sign up today on Care Pages… to tell you how much I appreciated your words. Especially when you say that we are not victims but protagonists asserting our value. I like that!
I will read your blog carefully when I have more time.
But for now, I just wanted to say HI! 🙂
Posted Nov 1, 2008 7:25am
Rereading your post, and how you are able to gain so much of value from the blogs of your virtual friends, I am aware of what a gift the Internet can be. I have recently been focusing more on the negative – how many people are addicted to the Internet and how full it is of violence and pornography. Thank you for reminding me that it is also a lifeline, and certainly the Care Pages are one more example of that.
Posted Oct 25, 2008 12:50am
What a lovely post. There is no one right path; we all stumble along, hoping our coping strategies will be effective. I get a lot of strength and courage reading other MM blogs, including yours. I’ll continue to send healing vibes, and keep you in my thoughts.
P.S. I’d like to quote some of this (with credit); let me know if you prefer I didn’t.
Posted Nov 9, 2008 6:55am
Yes, I have seen this with other cancer patients that their discomfort lays in the treatment rather than in the cancer, though presumably the treatment is what prevents the cancer from becoming a greater source of discomfort. I love your noting, “Keeping one’s composure is therapeutic.” And am so glad you are feeling well enough to decide that the Seattle rigmarole was worth it. I love picturing you regaining your health in the orchards.
Posted Nov 4, 2008 12:10pm
This is such an uplifting message, in so many ways. Your writings strike such a chord with me, though my cancer struggle was and has been almost non-existent compared to what you are going through. I am thrilled with your news and await results of your next test. Joey is all set to visit the States and so looks forward to his time with you, Aunt Mare, and of course, the Tiller.
Much love from all of us,
Posted Nov 4, 2008 10:04am
John, you’ve got such a great way with words to help those who care about you understand what your going thru. Like the season’s change, all healthy new forms of life take their place-like your body; new healthy cells will replace the unwanted ones!! You hang in there…Your doing a great job & have already won 1/2 the battle, keep your positive outlook & the other 1/2 will be a breeze. We miss ya.
Susie & Aurora Mears
P.S. we gave curly a hug the other day!!
Posted Nov 25, 2008 5:06pm
John, I am so glad to read your beautiful words and that you have the joy of family, friends, Buckwheat, a forest and home, and a gift for writing, photography, and living. I’m honored to know you. Give my love to your family and the biggest of congratulations to Isaac and Nikki! Thanks for giving of yourself on these pages.
Posted Nov 24, 2008 6:28am
Congratulations, John, on all points. So glad it’s possible this may be chronic rather than – dare I say – terminal. I guess I’m still in shock with your situation. You came into my life the rock of stability and health. Now, you join us of altered lives. I’d have never expected it. However, you gracefully give hope and show great example of how one should live. Enough blubbering, I’m really happy for you and your family, especially Ike and Nikki. Take care, my friend.
Posted Nov 16, 2008 12:51am
Your insight is stunning. It’s amazing what you get from introspection and investigation of other blogs. You’re also MUCH more calm and reasonable about this than I.
Congratulations to you, and certainly congratulations to Isaac and Nikki.
I’m curious. Have you considered posting the URLs of the blogs you read? Some of us would probably enjoy your discoveries.
Posted Nov 12, 2008 11:39am
I am a 53 year old with CLL (Chronic Lymphocytic Leukemia), I live in Renton and am also being treated at SCCA. So far my disease is not progressing so I’m in the Watch and Worry phase! I have decided to run the Vancouver BC 1/2 marathon for the Leukemia and Lymphoma society. I run with a team called Team in Training, they are a group dedicated to curing blood cancers. I have been asked to speak about my disease to help encourage our running team, would it be ok if I used some of your blog in my talk with the group? Your statement about “promising drugs” is just the kind of thing that inspires people to gather donations for research.
Posted Dec 4, 2008 11:22pm
A quiet mind… something I’ve never considered. I’ll have to try it. Thanks for the insight.
Posted Dec 2, 2008 9:26pm
Thanks for another thoughtful post. I think I’ve always been fairly good at doing nothing; MM just gave me an excuse. My dog Molly is also a cuddly nap companion. I’m amazed that she can sleep 20 hours a day, whether or not the neighbors take her for a 6-mile hike.
“Cancer can weigh me down with its burdens or it can make me stronger.” I think I indulge in self-pity all too often. I really appreciate your positive attitude; you are a good role model.
Wishing you continued improvement, and the time and inclination to write more beautiful posts.
Posted Nov 27, 2008 10:30am
A creative friend of mine had a poster on his wall many years ago that said “The secret to being an artist is: Always be a beginner.” Which is what you are every day that you see the world around you with fresh eyes. Yes, I know from meditation retreats how much the mind resists quiet, and how grateful it is when quiet arrives. Today is Thanksgiving, and I am grateful that you are in my family, that you are feeling well, and that you write so well.
Posted Nov 26, 2008 9:47am
As life brings me, as it does with everyone, some trials and disappointments, I have brought to mind some of the burdens carried by both you and Noah. The drive and perseverance that you both have demonstrated helps me find strength. I know I’m looking in from the outside and don’t comprehend the battles that you both have fought. Rather I’m choosing to focus on your acceptance of what is and ability to go forward. Thank you both for being an inspiration to many others and myself. I’m wishing you and your family the best.
Posted Nov 26, 2008 2:43am
I wish I could write as well as you, John. You have such a poetic and inspiring style.
Even though I am at an early stage, I recognize as my own many of the feelings (etc.) that you express. For instance, clouds. Before my diagnosis, I really never glanced at the sky. But since our trip to Burgundy, France, last summer, I have discovered the beauty of clouds. I will now stop to watch cloud formations, especially at sunset. Ah, the beauty of the small things in life. And the happiness they can give us, such a gift.
Life has slowed down for me, but in a good sense.
And of course my cats contribute to my general well being.
I am very glad we are in touch now.
Posted Nov 26, 2008 12:44am
Beautifully written John – thank you for sharing… I envy your time to walk, do yoga, and nap with your cat… but not the way you got there – a reminder to find the good in all things… Happy Thanksgiving to your family.
Posted Nov 26, 2008 12:39am
Happy Thanksgiving to you and your loved ones too John;
I really enjoy reading your posts. It’s hard not to be able to do more than listen. You don’t know me by name, but I wanted to reach out and let you know how much you touch others. I want to help, but there is nothing I can do.
I’ve missed you at the post office (although I rarely go there), and only discovered your absence a couple of weeks ago. I was so saddened to hear about your cancer. I also didn’t know about the challenges your son faced after his accident. A friend told me, so I looked him up on the Internet and learned how he has recovered so much through his amazing efforts and will. You have passed on wisdom and strength to your son and should be proud. Now I’m sure he’s passing some back to you.
Keep walking and looking for those special shots… two of my favorite pastimes too. And the cats…what can I say…I have nine of them, so I understand what Buckwheat means to you.
Look for cute cat you tube videos when you need a good belly laugh. I just saw two really good ones recently…one was a slinky cat sliding down stairs (slinky was not a key search word, use cats and stairs) and the other was called Roomba driver. I think you would enjoy them. Take care and heal your mind and body. I look forward to the day I see you back at work.
Posted Nov 25, 2008 6:55pm
John- I always open your updates as soon as they are posted. Knowing you are a few steps ahead of me in the treatment process and seeing you do so well is encouraging. Your writing is eloquent and inspiring. Thanks for sharing. Decision for me next week at Mayo-harvest only in January or full transplant??? Tough to know what to do. STRENGTH!
Posted Dec 6, 2008 11:58am
It was a Thanksgiving to remember, due in no small part to your terrific news regarding your blood tests. Listening to everyone’s thankfulness messages as we went around the table gave me much to think about. I was especially touched by Noah’s reminder of that fateful, past Thanksgiving Season and his assertion of how happy he is with where his life is now. It just filled me with hope for the future of us all. Thanks again for sharing this journey with us.
Posted Jan 5, 2009 6:27pm
I wanted to thank you for writing something so nice about Leslie on your care page. She would have truly appreciated that. She checked in on your care page often and prayed for you every night. Leslie was truly an amazing and inspirational individual who I have the privilege of spending 7 years of my life with. I don’t know what I am going to do without her. Best of luck to you in the future. I will certainly continue Leslie’s nightly prayers for you.
Leslie’s Fiancé-Dustin Davis
Posted Dec 20, 2008 10:38pm
You sound great, Dr Smith. You’re revving up your engine and it sounds real mean. I’m glad you are feeling stronger and I can hear it. Very sorry about your friend and cohort; she must have been a joy to have in your camp. No doubt there are/will be other buddies, and some will join you in recovery, and others fall along the way. Cancer treatment ain’t beanbag! But you yourself are clearly on a roll. Says me. Tach it up, tach it up, nothing’s going to shut you down.
Posted Dec 20, 2008 1:24pm
I like your analogies and alliterations. I can’t relate to the cancer road trip but definitely The Gorge. Yes, we too traveled I-84 Wed. night. Cannot improve upon your descriptions. I’m sorry to hear about your friend Leslie. But everyone has gifts to share, and meeting the bright spirit that she was will undoubtedly influence you the rest of your life, gifts that keep on giving.
Enjoy your family time over Christmas!!
Posted Dec 20, 2008 11:49am
Dear John and Marilyn;
You write so eloquently, John, about the process you are in the midst of. We were sorry to learn of the loss of your friend and are aware this has impacted you both on a multitude of levels. The world needs bright spirits and it is a loss for all of us when they leave too soon. We are glad, however, to know that you are safe and warm with family around you. We still have to negotiate that trip after this next storm to pick up our kids, who are flying in tonight and spending the weekend with friends. With holiday travel, this storm is not a welcome one. Anyway, we send warm wishes for a wonderful holiday with your family and rejoice that you continue to progress well.
Linda and Hugh
Posted Jan 16, 2009 8:24pm
Hmm. The dogwoods and azaleas bloom in April. How cool is that?
Posted Jan 5, 2009 7:37pm
What’s snow without Mary Oliver to help us see it?
this morning and all day
continued, its white
calling us back to why, how,
whence such beauty and what
the meaning; such
an oracular fever! Flowing
past windows, an energy it seemed
would never ebb, never settle
less than lovely! and only now,
deep into night,
it has finally ended.
and the heavens still hold
a million candles; nowhere
the familiar things:
stars, the moon,
the darkness we expect
and nightly turn from. Trees
glitter like castles
of ribbons, the broad fields
smolder with light, a passing
heaped with shining hills;
and though the questions
that have assailed us all day
remain-not a single
answer has been found-
walking out now
into the silence and the light
under the trees,
and through the fields,
feels like one.
Now if she would just bend her insight to the idea of shoveling, all would be complete.
Love to you ~~
Posted Jan 5, 2009 6:30pm
The sounds of December (and, so far, January) in Pine Grove have been the same–the snow blower, the plow-equipped tractor, and shovels digging ditches to keep run-off out of dry places. Winter Wonderland? Yes, when we find fresh bobcat tracks, or watch a red tail hawk speeding for a landing in a backyard oak in a near stoop position.
We’re so very glad that your test results have been so positive. We’re sure that 2009 will bring more good things. The grass widows and glacier lilies are preparing for their spring appearance under all this white!
It will be a party in Odell when you get back!
Davinne & Mike
Posted Jan 21, 2009 10:00pm
I can totally relate to the unbelievable amounts charged just to have a fighting chance. If it weren’t for my husband’s insurance, I wouldn’t have made it this far or for the help of organizations when we get hit hard. My 1st trip to the hospital was 18 days with 36 pages to sort thru of billing to find out I had been sometimes charged double or triple for certain items or charged for missing medicine. When I enter the hospital with each trip it cost’s us no less than $26,000, a trip to Celilo was around $10,000 a day. We have a life time max out, so I have to make sure where all the payments are going & make sure nothing is not worth while-my life is worth saving & we are truly lucky to have insurance-it is thru my husbands union!! John, I’m so honored & proud of the way you’ve handled yourself during this,it gives other’s hope & a insight to things we don’t always think about. I wish you well & can’t wait to see you back at the Post Office. Were still giving Curly her doses of hugs & loves, she always give’s Aurora a loving purr followed by a special kiss! Take care.
Posted Jan 21, 2009 7:38pm
My chemo drug, Revlimid, cost upwards of $7,000/month. Because I would have had to cough up my $4,000 deductible in one lump sum, I was going to have to look at other options. Then I found out about a foundation that underwrites the deductible/co-pay for people in my exact situation. They required a LOT of invasively personal information… but I thought that was the only way I’d ever get the drug my doctor ordered. Heh – turns out the “foundation” is funded by THE DRUG MANUFACTURERS. Rather than lose a $70,000 sale, they will “pay” (read: credit themselves) that $2-5,000 deductible.
This is a very bad system we have. Drug manufacturers and insurance lobbyists write laws. I’m all for the complete overhaul, even if some people end up with less. It’s better than the shameful caste system we have now.
(But yes, I also admit to being incredibly lucky, incredibly grateful that I just HAPPEN to be a person who made many sacrifices in order to keep my health insurance.)
Posted Jan 21, 2009 11:37am
I have become a frequent reader of your blog, especially as I may need to use SCCA for a mini-allo transplant in the next few years. I appreciate your thoughtful observations and insights. I am glad you are finding success with your treatments. I wish you well.
Like you I have excellent medical insurance, except for prescription drug coverage where I face a total annual benefit cap of $5000. You can only imagine what the $7000 I pay each month for 21 Revlimid pills (and before that $4000 per month for thalidomide) is doing to the financial security of my family. I do face a very real necessity of making a choice between optimal treatment protocols or financial ruin. At age 56 I have a long way to go before Medicare benefits are available. I know I will exhaust the $250,000 transplant limit of my existing medical insurance benefits, and I also might exhaust the lifetime $2 million benefits limit. A comfortable future retirement no longer is an option for my wife and me.
Posted Jan 21, 2009 11:22am
One more consideration: If your insurance has a lifetime cap, you’ll need to reconsider asking a nurse for tissues or chapstick! I know you know this, but a shocking number of people don’t. When I broke my neck, insurance assured that I coasted into a Top 10 rehab the moment a bed was open. When I was released and re-engaged with the real world, I saw what became of the less fortunate. It wasn’t pretty. Suffering aside, the lost potential of a 23 year old boy left to rot at his auntie’s house is a crime. I met a kid that had to have his girlfriends pull him backwards, because his hand-me-down wheelchair left his feet dragging on the ground. He only had the girlfriends because he sold the best pot. Obviously an entrepreneurial type, wasting his youth in the wrong wheelchair.
We can count our blessings. It would behoove us to not get smug about them. We’re all an eyelash away from disaster.
That was cheerful! I met a woman last week that stepped outside her home in February. An icicle fell on her head and broke her neck. She is in the same class of random disaster survivors as your boy is. I hope she had insurance…
Anyway, you be well! And hopefully, someday soon, our nation will be well. I pray we find a way to provide care for those that need it, not those that can buy it. Your story about the meeting with the finances person prior to treatment chilled my blood. She gets paid to tell people “No, can’t help. Sorry.” I hope she gets paid a LOT.
Posted Feb 12, 2009 8:31pm
(((hug))) thanks I needed to read this.
Posted Feb 6, 2009 1:01am
Posted Feb 2, 2009 10:52am
John, it is a pleasure reading your messages and following your progress. With your writing skill, I certainly hope you have considered doing a book about your experiences. Put me down for a first edition!
Posted Jan 31, 2009 7:15pm
I live alone except for my exceptional mutt, Molly. I’d become such a homebody that myeloma has actually opened my doors a bit wider. Needing help, learning to ask for it and accept it, forced me to exercise some stiff social muscles. Every time, I am met with a flood of warmth: of kindness, generosity, and compassion. And there’s nothing better for stiff muscles than a flood of warmth! My real and metaphorical doors will never be completely closed again.
I used to be an early riser. Now I rarely fall asleep before 2-3 am, and I miss those pre-dawn moments of peace and stillness. Your words console and often inspire me. Best wishes for continued healing, growing, and writing.
Posted Jan 31, 2009 2:33pm
Yes I saw at the P.O. this morning “He’ll be back April 4th.” Nothing like a small town to know whom “he” is. I love your analogy with the coyote. We readers still marvel at your eloquent writing. And the Howey’s (family?) messages coming out of Namibia…I’m sure interested in that story. My daughter Merrie was there you know summer 2007 working with the cheetahs. She didn’t get to see as much of that country as she’d wanted.
Tim said you’re right about the coyote looking for a boyfriend…that time of year again. They’re song-dogging over here too. (coyote talk)
R & T
Posted Jan 31, 2009 1:27pm
Your writing soothes us, Uncle John.
Much love from Namibia…
Posted Feb 24, 2009 2:26pm
Oh my. Sigh. Read. Wonderful.
Posted Feb 20, 2009 8:07pm
John – thanks for your beautiful essay. I can see you equally well with the birds as in the “cathedral” – and – from there, soon, in the humble, cozy Odell PO. A very changed man, no doubt… We are all awaiting your return so eagerly –
Posted Feb 17, 2009 12:32am
John, as always you know just what to say to help others better understand the life that you lead at this very moment. I love your way with words. Count down till April to see you at the post office, we still give Curly our love.
Aurora & Susie Mears
Posted Feb 16, 2009 12:54pm
Write, write, and write–it’s grand, like a great dessert. I am looking forward to seeing you in April back in the stamp booth at the Odell circus.
Posted Feb 15, 2009 2:23pm
Wow John, such powerful writing. Thank you.
Posted Mar 1, 2009 10:24pm
Spring is on the way and it’s hard to stay grounded and not give in to fits of unguarded hopefulness, especially in the face of news like this, which makes a bad day good and a good day better. Dash it all, I say, let’s throw caution to the wind and celebrate with another poem. (I seem to be very reflective and prayerful this week. It feels sort of like the flu.)
Continued good wishes,
Prayer (to the sun above the clouds)
by Piet Hein
Sun that givest all things birth
Shine on everything on earth!
If that’s too much to demand
Shine, at least, on this, our land.
If even that’s too much for thee
Shine, at any rate, on me.
Posted Feb 28, 2009 11:34am
This is really an amazing posting. Your philosophy is helpful to me and probably to all who reads your well-written and thoughtful pages. Here we received gifts of your experiences, thoughts about those experiences, poetry and the magnificent optimism of Janet Howey. I feel so inspired by all of this. Thank you so much for keeping up with the Pages. I for one so appreciate you and what you are sharing with all of us!