Friday, April 30, 2010

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!

Thursday, April 29, 2010

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!

Wednesday, April 28, 2010

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

Tuesday, April 27, 2010

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!

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!).

Monday, April 26, 2010

Day + 14 - Home Sweet Home

I'm home. I am overwhelmed in many ways and can't really adequately capture all the emotions I've been through in the last 24 hours. Mostly I am grateful - to all the people and processes that brought me safely here. I am especially grateful to the extraordinary effort of my "A" team that came through Saturday and so thoroughly and lovingly cleaned our house. It is so sparkly and clean and - safe - feeling. I can't thank you enough. And, kudos to the "garden" group who completely transformed the yard with new plantings, triming and a fresh bed of compost all around. You guys just overwhelm me with your love and support.

When I was released from OHSU yesterday, I was given a "duckbill" mask and told to wear it when outside - so my experience of much longed for "fresh air" was pretty compromised. Sunday was a perfect spring day - and leaving the hospital Kelly drove the scenic route - past the lilac garden at the bottom the hill in full, spectacular, peak plumage. We drove slowly through downtown and across the Steel Bridge - just to reacquaint myself with the streets and the city. And when we turned the corner to our block, I caught site of the lovely dogwood in front of our house - again - at its most perfect point of bloom-age - it was just lovely. The charge nurse who let me out warned me that I could go outside, but not to walk around if there were lawn mowing or yard work going on that might kick up dust or pollen. So, of course, EVERYONE on my block was out on this beautiful Sunday morning - mowing and doing yard work. So my arrival home was a little awkward and strange and overwhelming - I felt like I had to just duck into my house and hide.

So again, I am grateful and humbled and happy. Thanks so much to everyone who helped deliver me safely home.

Funny, I'm somehow reminded of a song:

This must be the place: Naive Melody

And another much loved version by Shawn Colvin

Sunday, April 25, 2010

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!

Saturday, April 24, 2010

Day + 12 - I Shall Be Released...

I met with the doctor this morning, and, apparently, I shall be released....

... (wait for it)

.... any day now, like possibly as soon as TOMORROW - Sunday, Day +13!!

This is amazing news. My counts have continued to climb - doubling every day - so that I will likely be at the threshold for release tomorrow! I'll know first thing in the morning if I'm headed for release.

My daughter Kelly has been here since Thursday to visit me and support Julie on the home front. We've been playing lots of songs - in keeping with my musical life flashing before my eyes - and it totally cracked me up when she came up with I shall be released this evening.

Kelly also helped me transition into total cue ball plumage today by shearing what was left of my hair at the hospital today:

Today @ home:

In preparation for my return, Julie organized a work party at home to do a complete - literally ceiling to floor - cleaning of our house. So while I was lounging around in my sterile space up here on the hill, this intrepid group spent the morning preparing my next "bubble" to be a safe environment for my baby immune system to grow strong.

Thank you Thank you Thank you to everyone who participated today! I am so grateful for your outstanding efforts. I don't know what to say. You are truly my angels, and I can't thank you enough.

Friday, April 23, 2010

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!

Thursday, April 22, 2010

Playlist from the Sky Lounge

I've had some nice opportunities to play music while I've been in residence at the "sky lounge". My musical friends and family have visited and shared some songs over the last couple weeks. I thought I'd pull together - my best recollection anyway - of what we played.

(Note: these are hyperlinked to a popup player version of the song from LALA.COM)

Day +10 - The Numbers Game

I really feel like I'm out of the woods now, and on the long climb back up to "normal".

So now it is a kind of numbers game we are playing. I get a "CBC" - or a complete blood count - taken everyday. This is used to monitor where I'm at in terms of my immune system functioning independently. The thing we are watching the most closely now is my white cell count.

At my lowest, the count was 0.1 - and they are looking for that to climb to at least 2.0 before I can go home. (2 Weeks ago, my white cell count was at 6.9 - to put some perspective on it).

The other number they are watching closely is my platelet count - in fact I've already received two transfusions of platelets to keep me going. Today's count was at "7" and a normal reading is more like 150-400.

So. This is why I'm still in the hospital I guess. In my isolation, I don't FEEL all that bad, but, out there in the real world I'm a danger to myself and others at the moment.

The Dr did say that "feeling good" is a great indicator that the actual counts will start to rise soon, so I remain hopeful that I'll be going home soon.

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!

Tuesday, April 20, 2010

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!

Monday, April 19, 2010

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!

Sunday, April 18, 2010

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...

Saturday, April 17, 2010

Day + 5 Rock on!

Claire is visiting this weekend, and we are tearing it up on the "sky lounge". She brought some crayons and coloring books, and, well, a Rock and Roll Attitude. And in this business, Attitude is everything!

As anticipated, my counts are dropping precipitately - my White Cell count is at 0.2 at the moment (it can go as low as 0.0). So all this means is the process is working. Staff are standing by and prepared for any additional support I might need - a transfusion - some antibiotics etc.

And as we speak, there is a cool rain shower passing over the city. I'll keep my eyes open for a rainbow!

Friday, April 16, 2010

Day +4: Hold on!

Claire arrived last night for a weekend visit - the perfect antidote to fatigue and lethargy. This morning we walked around the floor, caught up on news, played with the iPad, called Kelly on speaker phone, played some music and enjoyed the view from the Sky Lounge. Julie and Claire wandered on Hawthorne St. for a few hours this afternoon. They came back for dinner (Lebanese takeout for them, low bacteria hospital "room service" for me) and now we are choosing our evening video entertainment from the iPad.

We are "holding on" together.

And as often happens, I'm reminded me of a good Tom Waits song. Here's a couple versions that I admire:

Hang on everybody! Have a happy weekend... and GET OUTSIDE!

Thursday, April 15, 2010

Day +3: Neutropenia

eutropenia 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.

Wednesday, April 14, 2010

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.

Tuesday, April 13, 2010

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 + 1: The First Day

Today is the first day of the rest of your life right? Isn't that cliche? But true! So today is Day +1 for me. The first day with my new stem cells working their way to the bone marrow to make new cells. It is a fascinating process; amazing really. I am humbled by the science and I am grateful as well.

So I was reminded of this lovely old Richie Havens song, but I can't find any video of it on the WHOLE Internet! It is from his Stonehenge album from (gulp) 1970! Anyway, it is a real treasure and it just seems to fit my mood today:

It could be the first day...
When dreams are once again the things that I will have to say

and with my next days

I'll learn the secrets of the games I've often had to play
and when I finally settle down to where my spirit can be found
I will call up all my friends
to say I finally see the end

It could be the last day...
to live within the places where I've often longed to stay
It could be the last way

To live among the things that I've often thought the way

And when I finally realize
and try my new day on for size
I will call on all my friends
to say I finally see my eyes

It could be the first day It could be the last day
It could be the first day It could be the last day

OK. In searching out this song on YouTube, I did find a really precious performance by Richie Havens from Sesame Street... please enjoy this beautiful song.

Monday, April 12, 2010

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!


Sunday, April 11, 2010

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!

Saturday, April 10, 2010

Rocket Man

Rocket Man : I've been singing this song today...

It is a nice place to be up high in the air here at OHSU, but, I definitely am becoming the boy in the bubble. Julie and I just went for a walk and it was strange to be out in the air and the wind and with people and bikes and buses and birds around. Open the Pod doors HAL....

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


Friday, April 9, 2010

DAY -3

Well I finally got to see Mt Hood from my little nest up here at the top 'o the hill. The afternoon opened up and there she is! Lots of snow finally to show off in the afternoon light.

Friends and Neighbors and co-workers came by today, along with Julie - twice! - actually. Also met two MORE members of my team - my Physical Therapist, Lauren, and the Departure coordinator, Peggy.

I've been feeling good and started out my day doing 20 minutes on the bike - trying to follow one of the computerized training settings.... but I'm much better as just an improvisational rider. Good workout though.

My symptoms are starting to creep in on me - I'm pretty drowsy a lot, and my throat and mouth are starting to "feel weird", but, really I'm weathering this just fine so far. The big creepy chemo comes on Sunday where I have to pre chill my mouth and throat with - wait for it - POPSICLES!
I've tasked Julie with finding me some tasty, high end sorbets to start, and finish with a nice hazelnut gelato - don't you think?

I did set up a "Gallery" page today that is linked to the blog (look on the right for "OHSU Art". You can take a look at it to see all the beautiful, inspiring artwork that is everywhere in this institution. Lovely and uplifting stuff. And nice to know that there is at least ONE full time employed Art History major in town!

Cheers everyone, and have a happy weekend!

Thursday, April 8, 2010

The Beethoven String Quartets

My musical mentor and hero, Sue Jensen, told me the last time I was in chemotherapy to "surround yourself with great music". She suggested Bach's B minor mass. So I got the score from the library and purchased a nice recording of it on iTunes. I found it was a great comfort and a good meditative practice to help focus on something more, well, divine, than what my chemo stomach was talking to me about at any given moment.

This time around, I've been focusing on another wonderful series of works - or opera (plural of opus - thank you very much Carol!) - the Beethoven string quartets. Due to the generosity and general greatness of my in-law's the Ballou's of Chicago, I now have the complete quartets loaded on my iPad (! - more on that little distraction later) and, even more remarkably, am able to follow along with the score that Ted sent a long from an 1895 publication that belonged to his Grandmother. Wow! Spanning three centuries of technology and art!

In addition to the above, I've also got a series of lectures on the quartets, (provided, again, thank you Ballou's!) from the Teaching Company. So, even though there won't be a real test at the end of my study, you can feel free to ask me anything about Ludwig and the quartets... at least until "chemo brain" sets in and then I'm not responsible for the content.... ;-)

The quartets are a remarkable piece of work that spans Beethoven's entire career and tell a very dramatic story of the development of the master's mind and creative inner life. And they are very beautiful as well.

Day -4

Today was a beautiful - albeit cloudy bright day. Still no view of Mt Hood from my fabulous aerie .. but I remain hopeful.

Many visitors today, which was nice because my energy remains very good. Brother Eric was here bright and early; he was here when Dr Chen and Bryon "made rounds" which was good to introduce them. I then spent about 30 minutes doing sprints on the great training bike they have perched looking out DIRECTLY at my office building at Metro across the river (Hi friends!)

That was followed by Julie and a thermos of Americano's! We got to walk outside a bit in the sculpture garden around the top of the Tram again. Then, after my chemotherapy, I had a visit from work colleagues; then a MASSAGE from a lovely volunteer woman who comes on Thursdays, followed by a nice long catch-up/work visit with a graduate student and colleague, Vivian Siu. Then Julie came back for dinner and we watched Jon Stewart videos and a Big Love episode.

Now it is time for trazadone time! I get my vital signs taken at midnight AND at 4AM, so night is kind of a relative concept here in hospital land.

Sleep tight friends. Thanks again for all the comments of love and support! Keeps me going positive....on the bright side of this road.

Wednesday, April 7, 2010

Day - 5

Today is the second round of chemo: Ara-C and Etopisde, the "A" and "E" in the named BEAM protocol. (yesterday was Carmustine (FIVB), AKA BiCNU) I'll get this alphabet soup every day at 11am for the next 4 days.

I have to tell you, I am tolerating this very well so far. I like the digs, and the nursing staff has been wonderful. They are all bright and attentive, and very helpful with teaching me the routine and the ropes. So far I've met with my:

IVT (Intravenous technician)
RN (registered nurse)
CNA (certified nurse assistant)
OT (Occupational therapist)
Dr. (The Doctor)
NP (Nurse Practitioner)
Dietician (dietecian)

And I'm scheduled to see a social worker, and an exit coordinator. Oh, and as of just a few minutes ago, I am scheduled for a private masseuse to come to my room tomorrow!!

It takes a village!

Tuesday, April 6, 2010

Day -6 : Arrival

Well, I made it into the institution. And it all went very well. Julie and I had breakfast at Milo's in the morning and then when up on the hill...

I had a PICC line put in my arm at 10 am - with some minor complications, and then we snuck downtown for a nice lunch at Higgin's - since we weren't' officially admitted to the hospital yet we figured we could get away with it.

After admission, we found our way to "14K" which is the 14th floor of the Kohler Pavillion - home of the Phil Knight Cancer Center. This is quite a swanky and new facility with first class accommodations and even finer views of the city (see above taken from my window!). The room is very spacious and everything is new and nice... and, well, the view is unbelievable.

My first impression is very good. I love the staff - my nurse today was Malinda and she was just terrific; helpful and articulate, smart and funny. I met the Dr on staff this week, Dr Chen, and he too was very helpful and informative. All signs are good so far!

Right now I'm on the first batch of Chemotherapy which is: Carmustine. It ostensibly packs a punch , so I'm on some preliminary drugs for anti-nausea and other support.

And so it begins....

Up on the Hill...

3181 Southwest Sam Jackson Park Road
Portland, OR 97239
(503) 494-8311
* approximate times

So I'm staying at the Kohler Pavilion, which is the big new building at the top of the TRAM. (Note: Bldg #7 in the map attached below) It is a very nice facility, and houses the Phil Knight Cancer Center. My room is 14 - on the 14th floor.

Visitors are allowed, and the next few days are kind of a good time in that - while I'm receiving the treatment, the effects on my immune system are still a few days away. So I'm feeling pretty good so far, and will start to decline as the "therapy" takes effect. I can even go outside on the various plazas and causeways for the next couple days to get some fresh air.

The only requirement is that you be healthy - and over 18 - and that you wash hands thoroughly immediately upon entering the 14th floor.

Here's A MAP of the OHSU campus

The place is a total maze, but treat it as an adventure - like geocaching or a treasure hunt. You should probably check signals directly with me or Julie before showing up, just to make sure there isn't some grueling procedure that they need to take me away to the subbasement for.

The best approach is to drive up Sam Jackson Road, and when you see the campus at the top of the hill, take the first left and then an immediate right into Patient and Visitor Parking. Take the elevator from the parking garage up to the 9th floor, and walk down the long hallway with windows outside on your left. At the end of the hall, the tram is on your left and Elevator 1 is on your right. Take this elevator to the 14th floor, where you will have to call with the security phone and say you are here to visit Mark in Room 14 and the doors will be opened to you!

Sunday, April 4, 2010


So... to extend my space mission metaphor if I might: we are currently at T-8....

In the hospital they use a daily metric that counts backwards from the time you enter to "Day Zero", which is when I will receive my stem cells to "recover" me from the chemo-therapy.

When I go in this Tuesday, it will be Day -6, which starts to countdown to Monday the 12th - my new "birthday"! After that, I'll be counting on the positive side of the equation, and everything will be "plus" days. It is expected that I'll be in the hospital to at least Day 14 (+).

Today was Easter Sunday, and I spent a bit of it trying to organize things - my electronics - hardware and software, and "content" like music, podcasts and audio books. I'm feeling pretty good about all that, and will plan on doing more mundane stuff (socks and underwear etc.) tomorrow evening.

I keep trying to tell myself not to panic, that I don't need to remember everything I might anticipate needing. The have WiFi at the hospital, so iTunes is just a few clicks away, AND, Julie is going to be coming and going from the house, so, if I forget some obscure gadget or tshirt or something, she can always bring it next trip.

There is also the household stuff to deal with and worry about. I tried to do my best to putter around and get some little chores done - minor fixes and maintenance that Julie relies on me for... which leads me to a little bit of dread and panic. (I know she keeps me around for more than my powerful upper body strength - good for opening stubborn jars and stuck windows , but sometimes I wonder...)

Happy Easter everyone! Or rather, Happy -8!

Thursday, April 1, 2010


Well, we are convinced. We have signed the consent forms... and buckled our seat belts in preparation for the next phase of treatment.

Yesterday morning Mark and I met with Dr. Maziarz, and Mark's brother Eric joined us. We reviewed the statistics for people who have a CNS (central nervous system) relapse of lymphoma as Mark has. Those who undergo a stem cell transplant basically have three times the survival rate of those who don't. It seems clear that going forward with the stem cell transplant is the best chance for long term remission, and that Mark is a prime candidate (being "young and healthy" and all) to get through the process with minimal collateral damage.

So, Mark checks into the hospital Tuesday morning, April 6, where he gets a PICC line inserted and gets the first round of chemo that evening. The PICC line is a "peripherally inserted central catheter" which gives IV access for a long period of time. Mark had one two years ago for about 6 months, and it didn't give him any trouble. All drugs and fluids can be fed through the PICC line, which means he avoids multiple IV pokes. The PICC is our friend.

Kelly is here on spring break this week with two friends from college and it's great to have them around! Kelly and Claire may each pay a weekend visit to PDX from their colleges in the next couple weeks to support Dad in the hospital, where he expects to be in residence for 3 - 4 weeks.

Your comments posted here are always very supportive and cheering; thank you. Keep 'em coming!
Love -- Julie