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.

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!

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

Get Directions

(503) 494-8311

* approximate times

ohsu.edu

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
(http://www.ohsu.edu/xd/about/visiting/directions/upload/ptcaremap.pdf)

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!

Countdown!

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!

Consent

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