Anniversary!

Dear Friends:

The last time I posted to this blog I was celebrating my "graduation". My bone marrow transplant was complete and I was let out of the orbit of the medical institutions and the processes.

So now it is my "anniversary".   In fact, today (April 12, 2011) is the one year anniversary of my reboot - my bone marrow transplant.  

Mark 2.0

Today marks 365 days Cancer Free!

I thinks calls for a celebration.... and I mean that specifically <and musically>

I just had a PET Scan last week, and the labs came back "unremarkable".  That is not something you would normally aspire to being called on or judged as, but in the cancer world, this is a really good thing;  I am pleased with the results.

Dear Followers:

I have missed writing in this very specific venue.  And, I wanted to revisit this place again to commemorate the passing of time and to recognize the significance and reverberation of memory that this anniversary brings to me.  

And I wanted to reach out to all of you who have followed and supported me through this process.  Please know that I am well and working and happy and active - with NO lingering signs of damage or anything.  Those of you who are close to me physically/geographically know that, if anything, I am more alive and energetic and healthy than I was before I entered into the world of cancer.

Thanks for following my blog, and, I'm sorry for not writing for a year... my only excuse is that I've been busy.  I've been active and engaged and outside and involved - all the things that life is about.   I love my wife, I am shopping for a new bike, and going to Costa Rica to learn Spanish, and my youngest child is graduating from college, and... 

Well, now my life is boring and just normal.

Like the pathologist's report, it is:  "unremarkable".

May you all be so blessed.

Day + 30: Restaurants!

Tomorrow is Day + 30 which means I'm allowed to eat in restaurants again! Please call ahead for reservations ;-)

I am also available for 'viewing' at home pretty much anytime. With my nearly normal White Blood Cell Count (see below) - I'm no longer a danger to myself and others. My only restrictions at this time are travel - and crowds and I'm still on a low bacteria diet - which is odd, but doable. My energy level is still "low and slow"... so I have to pace myself pretty carefully.

But basically, I'm back! Ready to Rock!***


Details Details:
Yesterday I had multiple appointments with my "team" of doctors.

The consensus is that I'm doing great! My OHSU coordinator, Carol, said that I "looked like a champ"! And Dr. Lo, my Ophthalmologist said: "The eyes look great with no sign of ocular inflammation".

For those of you playing at home... here's the #s as of yesterday:

• White blood cell count: 4.6 (remember, in the hospital I was 0.1.. and 'normal' range is from 4.2 - 11.5)
  
• Platelets: 26 (Still pretty low - but ticking up. This is the main reason for further restrictions - they worry about bleeding and bruising from everyday activity - let alone a real accident. Once I get past 50 I'm pretty much in the clear.)

***With some caveats: I have to act my age; be in bed by 10:30; groupies are limited to immediate family members only; and by drinking plenty of fluids, they apparently mean, er, Water....

The ripple effect

In Geography, we talk about the "fundamental laws" - like in physics - which are stated as:

1. Everything is related
2. Near things are more related than far things
3. ***(see below)
   

Another way of saying this is: "distance matters". A lot of geographic analysis is based on measuring how well stuff either follows these laws, or, often more interesting, how stuff doesn't follow the law. What is immediately around you profoundly effects you - and you can have a measurable effect on your immediate neighborhood too. So I've been thinking about this because of bread.

I talked about our bread project on the blog the other day. The one where with the application of long, luxurious time, one can build a beautiful complex bread out of just a little yeast, flour and water. Well, I'm here to confess that it was a bit of a failure - mostly due to how unusually cold it is outside! Our yeast never did take off, which I guess is kind of an example of a lack of a ripple effect (note: we will persevere with another attempt tomorrow - stay tuned).

But, never worry, the day is saved (or dinner is saved anyway) by the great news I got from my "coach" and Nurse Practitioner Carol Jacoby at OHSU today: that I'm healthy enough - with sufficiently high blood counts - to be able to bend the "low bacteria diet" rules a bit. Specifically, I told her that I live just blocks from a really good bakery (the Fluer De Lis in Hollywood), and, could I possibly get baked goods from them? (The rules of the diet says that all bread has to be prepared in "commercial facilities and covered in cellophane or plastic wrap"). She also allowed that getting an espresso at a coffee shop was also OK under her interpretation - they are pouring boiling water over the beans after all!

Anyway. Julie and Carol went shopping for dinner, and stopped in at the bakery to pick up my favorite Olive Ciabatta. Turns out they were out of them - or rather - that they only make them on weekends now because, as Heather, our familiar cashier said: "since your husband isn't coming in every night to get his loaf". She then asked about me, and how the Bone Marrow Transplant had gone.... Somehow, through the local grapevine, my bakery learned what I was going through (I'm pretty sure I didn't tell them). How they found out I'm not sure - but we have a pretty tight neighborhood and the bakery is a natural gathering spot for folks. Oh, and, it is the closest one to my house.

So maybe this is kind of a little slice of "It's a Wonderful Life" where I'm seeing what the effect of my life has on the city and the local economy ... GASP! No Olive Ciabatta on Weekdays! (picture Jimmy Stewart stumbling out of the bakery wide eyed and desperate...running in his rumpled suit - arms and legs flailing - down the dark, snowy - black and white only - streets)

We all have a ripple effect in our universe of family, friends, neighbors and all our associations - some of them are emotional, some more practical, some are economic, some biological (cover your mouth when you cough!) - or usually some mysterious combination of these.

(Come to think of it, I better check in on the bartender at Moon and Sixpence - he's is probably scaling back a bit lately too...)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Ripple by the Grateful Dead. I've never been a "deadhead" particularly, but, really, is there a sweeter song to go with this theme? I like this live version a lot - Gerry's solo guitar starts to really soar toward the end, and, the vocals are so sincere and, while not perfect, certainly earnest.

;-) enjoy.


*** BTW: The 3rd law of Geography is:

The area of interest is at the intersection of 2 or more map sheets.

Counting Time....

OK, so I'm feeling guilty about not "keeping up" with the blog. But, now that I'm on the other side of the bone marrow process, I've kind of started losing track of the time. My perception of time is not foreshortened, it is lengthened. Besides, recovery contains much less drama than the procedure itself did; which is good right?

And of course, (an anachronistic variation on the current saying): "there's a song for that"...
Judy Collins singing Who knows where the time goes?

Sandy Denny in a YouTube video/recording from the Fairport Covention back in "the day"

Easy Does It
An example of how my perception of time has changed: this morning, sisters, Julie and Carol - and I - sat around discussing how to plan and prepare the making of bread. Normally I am more of a "get to know your local Baker" than a "bake your own bread" kind of guy. That's why we have town centers, villages, cities in general right? Access to the tools and methods of fermentation and their results: Beer, wine and bread. That's why I live where I live. That's the foundation of civilization in general right?

Currently, in my recovery mode, I'm on a "low bacteria diet" - meaning I'm not to eat fresh fruits and vegetables (Ironic right? Isn't that what they tell you to eat to prevent Cancer?...). This diet includes a restriction on restaurant food and even bakery bread - because the loaves are not "factory sealed" in cellophane.

So. We are going to bake our own using the slow fermentation method popularized by the book: "my bread" by Jim Lahey. His thesis is that using less yeast, and more time, you yield a bread that is more subtle and satisfying - bringing out the flavor of the grain and building more complex structures and textures. But it takes a LOT of TIME. - like 18 24 hours in advance.

But sometimes, not counting the time too carefully, letting it wash away, results in the best outcomes...

April Showers

The weatherman said that April was one of the rainiest on record. (Thursday was the 24th day this month with measurable rain - tied with April 2003).

Today is May Day - and I'm really looking forward to "May Flowers", but, frankly, where would we PUT more flowers? There is such an abundance already! The weather promises to warm up tomorrow - and I'm hoping to spend some time in the backyard, soaking up some outdoor air and sun.

Julie has lined up people to come visit over the next couple of weeks while I continue to need "monitoring"; her Sister Carol from Chicago, and our dear friend Kitty from LA will be with us for the next two weeks.

So I'm a available for "viewing" if you are healthy and would like to drop by and say hi. I am still pretty slow and low, but it does brighten my mood to see friends. Just check with Julie - "the gatekeeper" first ok?

And Happy May Day!

Day +17: Oops!

Remember playing Chutes and Ladders as a kid? That's how I feel this morning, like I've slid down one of those dreaded "chutes" - after climbing the "ladders" so successfully. I spiked a fever last night (100.9) and ended up in the emergency room! I actually spent the entire night there (not recommended***). This is standard operating procedure for somebody in my situation - to check into ER. They did blood cultures and an X-ray and generally poked and prodded me all night. I got on some serious IV antibiotics. I'm fine now, and the fever is gone.

The Bone Marrow Transplant people came and visited me this morning (finally, people who understand me!) and, thankfully, decided to send me to the relative calm and safety of my home, rather than keeping me in the hospital. So I'm back home now and happily 'blogging' and soon to be 'napping' from my recliner - where I belong!



A night in the ER:



***OK, so I'm trying to keep a positive attitude about all this, and, to a person, the staff I've worked with "on the hill" are terrific. HOWEVER, spending the night in the ER was pretty close to torture. It started out OK actually: I was admitted immediately - valet parking even! - and put in a treatment room, but had to keep my mask on the whole time - since ER is where all the SICK PEOPLE are! We checked in about 8:00 PM, and, somewhere around 1:00 AM the nurse allowed that I would be spending the night in the hospital, but, they didn't have any "beds" available, so I was going to have to stay in the ER. Julie was able to go home a little after this - leaving around 1:30AM. Sometime later they found me a pillow. The nurse who came on shift at 6:00 AM thought to bring me a blanket. (Oh, and, thank god for noise canceling headphones because there was a woman screaming and complaining loudly every 10 minutes or so ALL night. She was obviously a chronic complainer, and staff were doing the best they could to keep her quiet. She was still going at it this morning - though she had clearly lost some energy and ability to project her voice - finally!) I was really OK though - and kept consoling myself by thinking: "at least I'm not the guy who's coming in on the LIFE FLIGHT HELICOPTERS" that kept landing outside... Oops, there I am slipping back into optimism again, sorry.

Anyway, suffice it to say that the ER is NOT the place you want to spend the night. They are good at patching people up and saving lives, but they are not really geared up for creature comforts and "healing". God bless em though if you need em!

Day + 16: Trending Upward

So after my upbeat report yesterday, I have to say that I'm realizing this is going to be a long, slow, process to complete recovery. I had a bit of a setback last night in the form of some fever spikes (something the hospital takes very seriously). Everything is fine this morning, but, it was a little scary, and, it served to remind us to "Respect the Process" and that I should do as I'm told.

While the overall trend has been, and continues to be, upward, I can't necessarily expect consistent improvement day to day. A hard lesson to learn sometimes. I continue to be upbeat and enthusiastic, but need to learn to temper that by listening to my body and doing what the doctor's tell me to.

Thanks everyone for you continued support - your comments and cards and emails - all are so great to get and help "keep me where the light is"....


YouTube video/audio of John Mayer's: Gravity

Day + 15: Morning has broken!

Today I actually went for a walk OUTSIDE for the first time in weeks. After a night of rain the sun appeared this morning and we took advantage and walked up to Grant Park in the sweet, clean air. Everything is in bloom right now - it is an over abundance of color and show. I am particularly happy to be "out" when the Lilacs are in bloom!



DETAILS DETAILS:
Now that I'm home, I am pretty much untethered from all the "support" that I was given in the hospital - except for a regimen of pills and an antibiotic "infusion" that is somewhat technical and tedious to deliver. I still have a PICC line in my arm, that is used to draw blood and infuse drugs and blood products. At the hospital, this was all administered by the professional nursing staff. At home, Julie and I are now in charge of this technology! A kaiser home health care nurse came over on Sunday and gave us detailed (she was here for an hour and a half!) instructions on how to set it up and deliver it. We have to do the infusion every 8 hours - which keeps me somewhat on a hospital like schedule (i.e. sleeping "through the night" is kind of a relative concept).

The other part of my new reality is visiting "the hill" every couple of days to get my blood drawn to analyze the progress of my recovery. I visit the infusion room at the hospital and sit in a giant chair and wait for the lab results to determine what it is I need in terms of support.

The good news so far: I went in for the first time today, and they sent me home because my counts were stable - so I didn't need any additional support. YEAH! (Actually, my white cell count had dropped since Sunday from 3.0 - 2.6, and my platelets and red cell counts haven't budged upward yet... but this was considered stable and normal, so they sent me home!).

I have a couple of other odd appts coming up as well: following up with my Radiation treatment team at Kaiser, and Dr. Lo, the Ophthalmologist who was treating my eyes with injection "therapy" early in my treatment.

So my life is still pretty securely tethered to the hospital and the drugs and the reality of my treatment. But, it is all so much easier to tolerate and accept while working from the comfort of my home and family (and my faithful dog who is always ready to nap right next to me no matter what!).

Day + 13 - Re Entry

So I'm actually going home ... TODAY! Day +13!

While I am of course excited and relieved and ready to land this spaceship safely back home, I'm also a little nervous about reentry into life on earth, with all its attendant "Gravity" and such.

My thanks again to the work crew who answered Julie's call - it is so nice to know that the house is well prepared for my return. I know that really gave Julie a big emotional lift to have your help.

And, I can't say enough about the staff and resources here at OHSU. I'll certainly miss my view of the lovely city and Ross Island and the Tram... but I have pictures and memories for that... and they pale in comparison to how sweet a bit of FRESH AIR will be!

Au Revoir Sky Lounge!

Day +11 Homeward Bound!

Homeward Bound (Another part of my musical life flashing before me - this was probably the first vinyl I ever owned... and now this song sounds particularly sweet to me).

First thing this morning my doctor brought the news that my counts have begun to climb. This is huge. It means that the procedure has actually "taken" and my body is producing its own cells again. Mark 2.0!

The actual numbers are rather small and insignificant, but the trend is in the right direction: Upward and onward!

If all goes well - meaning if I continue on this course for the next couple of days - it looks like I can go home on Monday - which would be day +14 - the earliest possible time frame that the Dr's have seen!

So I am happy, and humbled and full of gratitude for the process and the people who've got me here.

Blessings on you all!

Day + 9 - The Nadir Point

So sorry I missed a day altogether on the blog. Partially, that is because there was literally nothing to report. But in the spirit of "embrace the boring" that is something to write about right?

I spent day +9 all by myself. Julie stayed away because she is running a low fever and has a cough, and since my counts are all bottomed out - at the Nadir Point - where I am most susceptible.

So I spent the morning listening to the wonderful audio book version of: The brief wondrous life of Oscar Wao (thank you Karen!) along with other distractions - like a nap in the stream of afternoon sun pouring in.

I noticed that my hair is starting to fall out in chunks. So it is probably time to order the shears and take it all off - less messy and kind of fun to do right?

So, hang in there - and count our blessings for whatever health and energy we are given each day!

Day + 8 Boring is a good thing...

Nothing dramatic to add today. My Dr said that medically, I'm "boring" - which is a good thing in this case. I did start running a fever and they were able identify a specific bug in the culture and applied some ani-biotics this morning. So that is why I'm here right?

Claire visited first thing this morning and is now back at Carleton College after her brief stay.

My main accomplishment today was to finish watching the "Firefly" series on my iPad! Now I'm ready for the Serenity Movie!

Julie is here now with homemade Chicken Soup = which of course can ward off all kinds of bugs right? We're going to hang around and watch a movie for low key evening. Embrace the boring!

Day +7: Sky Lounge Birthday

Mark celebrated his birthday today with a dozen visitors throughout the day, bearing one cake, one pie, one plate of cookies, and assorted balloons, cards, and silly presents. And there was a rousing chorus of "happy birthday" sung by the nurses.

Claire and I arrived this morning via the tram, and we could wave at Mark in his room as we docked. I had a little bit of a sore throat today, so I wore a mask to ensure no passage of germs. Last night Mark had a slight fever, which led to an early morning chest x-ray, but nothing showed up and the fever didn't return. His white blood cell count went down from 0.2 to 0.1 today, and his energy and appetite are very low, but we are grateful none of the scarier side effects are showing up.

Happy Birthday, Mark!

Day +6 : Becalmed

Well, as expected, my counts are plummeting. This leaves me with just enough energy to drift in and out listening to music - and to attempt to cover the NYTimes. So it has been a day of rest - becalmed.

For ME anyway. Julie and Claire have been busy, organizing a work party to clean the house and yard in anticipation for my return - sometime in the near future.

I did get my first "top up" last night - some platelets to boost red cell numbers. Thank you to ALL who give blood. You are angels!

Claire and Julie are in the "sky lounge" now, and they are going to watch the Blazers playoff game tonight against the Phoenix Suns. I might be resting my eyes...

Day +3: Neutropenia

Neutropenia is a condition characterized by really low blood levels of infection-fighting neutrophils, a specific kind of white blood cell. Mark's white blood cell count has now tanked sufficiently that he is neutropenic. He has been neutropenic before during chemo (several times 2 years ago, and last year) which was a big red flag to put in place barriers to bacteria, like staying away from people, fresh fruits, and raw vegetables, and taking prophylactic drugs to prevent infections. However, this time all those precautions are already in place! This is, as they say, "planned neutropenia", - a reaction to the mega-dose of chemotherapy he got last week.

So basically Mark has major fatigue and nausea, and just has to wait it out. His counts will continue to go down for a few days before the new stem cells "engraft" and start creating new white and red blood cells. This is the part of the process that takes patience and fortitude, - and Mark has plenty of both.

He has also had some visitors today and some walks around the floor (11 laps around the floor equals one mile) and some music and reading. It's a beautiful sunny day to be looking out over the city and Mt. Hood.

Day +2: New moon

Fatigue and nausea have arrived as predicted, but according to the Astrologists, this is an auspicious week for new beginnings...

Sandra's Celestial Compass for the week of April 12, 2010

By: Sandra Helton, Ph.D

There is growth and powerful energy building from this weeks New Moon point until the Full Moon in Scorpio April 28. As the first New Moon in the first sign of the cycle it carries a special and empowering vibration.

Monday – April 12, 2010

The Moon in Aries beginning 9:31 AM generates a long term vibration of opening doors and opportunities.

Tuesday – April 13, 2010

Ideally this is a day to plan for the next two week cycle of growth that will move quickly and build momentum at a rapid pace.

Wednesday – April 14, 2010

Today holds the first New Moon in Aries that initiates the impulse to take a leap of faith into the future. All acts requiring independence, leadership, taking steps uncharted, beginning something new, are favored from now until April 28.

The Nitty Gritty

The transplant procedure yesterday afternoon could not have gone better! There were 6 - 8 doctors and nurses in the room, and Mark was hooked up to various monitors to check his heart, blood pressure, etc. during the 90 minute infusion. In order to be as gentle as possible with the stem cells, they were infused into Mark's central line with a hand held syringe. So a nurse was sloooowly pushing and refilling this syringe for 90 minutes! (I couldn't help but think of how tired my hand gets after 2-3 minutes of whipping egg whites or whipped cream by hand...)

Mark was carefully watched for any adverse side effects and there was a shelf full of medications at the ready, if needed. But none were needed. Mark was wearing his Superman Tshirt, after all. One of the odd side effects of the DSMO used to preserve the stem cells is a distinctive odor, - like creamed corn (think "grade school cafeteria"). It was a bit unpleasant, but not bad. The process was a little tense, and after it was over and all the team members had congratulated Mark and left the room, Mark and I were exhausted and took a nap.

Mark is a little tired today, but still doing great, and so am I. Thanks for all the love and support; it means more than you can know.

Hugs -- Julie

Day 0!

OK, it is Day "Zero" - my transplant happens today at 2:30pm. I'm feeling a little nervous (despite the "pre-meds") but overall pretty confident. I have a terrific nurse, Jackie, and she's going to 'hold my hand' through the whole process.

After this, I become the "boy in the bubble" for awhile until my immune system takes off on its own again. Meantime it is the hospital's job to keep me scaffolded with an artificial system using drugs - antibiotics mostly. They are monitoring everything closely to watch for infection and fevers etc. Kind of a scary time, but, this is what they do here on the 14th floor. I'm in good hands and I have been so appreciative of all the good support and messages songs and gifts from you all. Thanks you thank you thank you!

HAPPY BIRTHDAY!

Day -1 Last Round!

Today is the day that I get the Melphalan - the last round of my chemo regimen. (The "M" in BEAM). The conceit here is to power down popcicles and ice chips for an hour while the poison is being infused. This is to protect the mucus membranes in my mouth and throat from absorbing too much of the poison in the tissues, which can cause terrible mouth sores. So, I'm being a trooper and trying my best to keep it chill!

Julie brought in some sorbet bars - blackberry and lemon - and the staff is feeding me ice chips. Kind of fun (though a little vodka in the ice might hold my attention better...)

More visitors expected today - my musical friends and family - Towny, Heidi, Jen and Tod are all showing up in a bit to play and talk and generally hang out at the VIP Sky Lounge!

DAY -2 Weekend Update

Today was finally a clear morning view of the mountain. Just lovely. It has been a busy day already with Julie bringing the requisite Americano's followed by a brisk sprint on the stationery bike (with John Mayer on the soundtrack... nice). Then, and old friend and colleague, John Fregonese stopped by to play music for a couple hours. He's got a nice Tacoma acoustic guitar/bass that he accompanied me and the Tele and the Gurian on. Many medical visitors - two doctors and my nursing staff of Kathie and Maggie coming and going.

I got the final round of the "E" and "A" part of the BEAM protocol, which means that tomorrow is the "M" part - with Popsicles. They load me up with some pain and nausea medicine before the routine today, so I did sneak in a nap after John left (while "studying" the Beethoven mind you)....zzzzzzz.

So now I look forward to Julie coming back and, later, hopefully, music playing with Leela and Seth followed by dinner delivered by work colleagues - more on the menu after it arrives.

Julie and my Brother and his family are all attending a dance concert downtown tonight which I'd love to see. It sounds pretty cool.

Here's a review of the show they are going to see: The U-Theater from Tiawan

(http://blogs.wweek.com/news/2010/04/09/live-review-u-theatre-at-the-newmark/)