| January, 2004 |
The new year starts with
continuing Temodar chemotherapy. Steff is sometimes tired and has
stomach aches from the chemo, but overall she feels pretty strong and
has few seizures. She works with Fred to get ready for the next MRI
appointment on January 26. She still plays squash with Jitka and rides
her bike to work 100%. |
| January 18, 2004 |
Trip to Salt Lake City. We visit
Sabine & Ed & little Sashko. It feels great to get out and
travel again. It is the first time on a plane again and Steffi is
nervous because she thinks the metal in her skull may trigger the
security scanner and because she doesn't know how flying and the
changing air pressure will affect the seizures etc. Everything works
out fine, no alarm sounds and she is feeling fine on the plane. Only
one or two short seizures. We are used to it.
Sabine, Julie and Steffi at Rich & Julie's
house in Salt Lake
City.
Snow shoeing in the Utah mountains.
 
|
January 26, 2004
|
Second follow-up MRI: We are
extremely nervous because this time there hasn't been any radiation
treatment. I cancel a trip to my hometown Osnabrueck in Germany to
attend my best friends (Axel & Jutta) wedding. MRI's have become
the center part of our lives and I need to be
with Steffi. The MRI result looks
clean again, very clean. I am glad I stayed. The doctors are just as
amazed and happy as
we are! Since the result is so good the Temodar chemotherapy
continues. Steffi is still working full time, biking and running. A few
seizures. |
| February 13, 2004 |
Bend, Sunriver, Mount Bachelor
in Oregon: We drive to Bend, Oregon with our friends Gretchen &
Adam. Gretchen parents own a 'cabin' (it really is a house) on the
banks
of the Sunriver, very close to Mount Bachelor. This is the fourth year
in a row that we go together. We have fun with cross country skiing.
Steffi is in very good shape. However, she cannot enjoy the hot tub as
much as it causes her skin to itch. She has a few seizures. We drive
back on President's Day, January 16, and both get sick with a GI virus
overnight. We both stay home for 2 days, feeling really bad.
|
March 12, 2004
|
We travel to Germany. Steffi
is looking forward to attend her dad's 75th birthday. We fly to
Stuttgart, her
brother Joerg picks us up. I stay for 4 days, then travel to Osnabrueck
to
see my family and friends (I do not attend the birthday, time is always
too short). On Monday, March 15, Steffi takes the train
to Freiburg to visit her longtime friends Ingrid and Barbara. She is
full of
joy going there, awaiting to see them again. They go hiking together
just like in the old days (Kirchzarten,
Jesuitenschloss) and she spends the night at Barbara's home in Tiengen.
They spend the following morning together and after this wonderful time
she travels back to Pforzheim. She is very happy. Her dad's 75th
birthday comes and passes and everybody has a good time. On March 19,
Steffi travels to Heidelberg to see her friends
Birgit & Peter. She
feels great and they spend a long evening talking. She comes back to
her parents house the following day. This will be the last time Steffi
has seen Barbara, Ingrid, Birgit and Peter. We leave our
respective hometowns on March 21. Steffi starts from Stuttgart, I from
Hannover and we meet in
Kopenhagen for the flight back to Seattle. The farewell is tough for
Steffi. Her parents always had a
hard time to say 'goodbye', to let her go and do her own thing and they
always let Steffi feel it. Of course, this time it is even
harder. It is the last time her parents see her. Nobody can know, of
course.
Walk in the Black Forest.
75th BD, March 17: Edelgard, Jochen, Lothar, Marina,
Steffi.
In Freiburg with Barbara and
Ingrid.
In Heidelberg with Birgit (Peter took the
picture).
 
Saying goodbye at the airport in Stuttgart.
|
March 25, 2004
|
Third follow-up MRI: We are
a little more relaxed. Steffi is confident, she doesn't 'see' the tumor
anymore in her mediations. Friedemann and Danielle have done some
amazing work with her. The MRI result looks
clean again, very clean. Dr Spence gives us a thumbs up, literally. We
like him
very much. The Temodar chemotherapy
continues. Still working 100%, biking, running, and playing squash. Few
seizures.
|
April 3, 2004
|
 Bike ride in Skagit
Valley (60 km). The tulips are out, the weather is fine. Steffi feels
energetic but also nauseated, it is the end of a chemo cycle. She still
rides her
bike pretty strong. Amazing!
|
April 25, 2004
|
We go to Mount St. Helens to
climb it. Steffi really wants to go up there again. We have been two
times before but this time it is very different. It is a big challenge
for her but she feels up for it. Her physique is strong and thanks to
the good work with Fred and the MRI results she feels very confident.
Plus, we go with really nice and fun folks. It is the "Guenter crowd",
a bunch of very
nice people, some of them were at the Ocean Shores Thanksgiving 2003.
We get our stuff ready, it is Saturday
afternoon and warm when we hike to the base of Helens. The trail is
snow covered from the start. After a couple hours hiking we set up the
snow camp. The
weather is fantastic, a warm wind is blowing and we have fun, a lot of
fun. The next morning we
climb up to the crater rim.
Steffi is in great shape, she is very fast. No seizure on summit day,
great! On the way back we take down the camp, pack up and hike
out. Driving back to Seattle seems a long way. Of course, we stop for
burgers and beers on the way. A great weekend ends. Steffi and I
climbed
Helens three times, the last time was the best of all!
 
 
 
The summit: Hans, Gue, Jan, Steffi,
Sybille, Miga
|
May 8, 2004
|
Bike tour around Bainbridge
Island. One of favorite rides, 90 km door-to-door. It rains for about
an hour and we take a break at a nice cafe. Steffi is in great shape
and not tired at all.
I gave Steffi a new road bike for her last birthday and when she is in
good form I have a hard time keeping with her. We will do one more bike
ride together, on June 27 to Redmond (80 km round trip).
 
On the
road...
Steffi & the Rock Frog.
|
May 20, 2004
|
Fourth MRI: Doc Spence gives us
a thumb up. If anything at all changed the tumor site may have become a
little smaller, maybe due to scar tissue formation. However, Doc Spence
had to discuss the MRI with
the radiologist. Steffi's has some stronger seizures sometimes and her
left arm is more affected by them.
|
June 2, 2004
|
We join the Brain Tumor Support
Group meeting at the University of Washington. A new experience for us.
We get to know people with different kinds of brain tumors, different
problems. It feels good to be among people with similar thoughts.
Steffi feels lucky to be in such good shape and able to live an almost
normal life, working and having fun.
|
June 6-18, 2004
|
Axel and Jutta visit from
Germany. We take a road trip around Washington, have a lot of fun. We
travel on Hwy2, visit Wallace Falls in Gold Bar, camp at Tumwater
Campground, visit Leavenworth. Then we drive to the Sun Lakes and camp,
continue on to Steamboat Rock, the Grand Coulee Dam and Alder Lake,
where we camp again. Then, we visit Winthrop and come back on Hwy 20.
Steffi has some stronger seizures but otherwise feels good and
energetic. We have a great time together, BBQ every day, talk do fun
stuff together. This is the last time Steffi sees Axel & Jutta. But
they will come back this summer to visit me and say goodbye to her here
in Seattle.
Just arrived after a long day
traveling.
Jutta, me and Stef at our house.
 
At Ray's Boathouse for Axel's birthday (June
9). At
Wallace
Falls.
At Sun Lakes, Dry Falls.
  
Hiking up on Steamboat Rock.
  
Hiking at Alder
Lake.
In Winthrop.
 
Bike ride to Lake
Washington.
Our last evening.
 
|
June 17, 2004
|
We have an appointment with Doc
Spence (no MRI). Steffi is concerned about her increasing and intense
seizures. Doc Spence calms us down and recommends staying on track and
following the regular schedule, meaning an MRI in 4 weeks. Steffi
continues to have more intense seizures, headaches, dizziness at times,
not good signs.
|
July 14, 2004
|
Fifth MRI: Steffi is depressed,
she knows that the MRI won't be clean. She writes "no surprise, I felt
it". Her seizures had increased in
frequency and intensity, and she had more headaches. The MRI report
reads: Increasing
right frontal T2 signal abnormality in conjunction with new nodular
enhancement of tumor progression worrisome for recurrence of tumor.
The Temodar chemotherapy is stopped immediately. Steffi has left arm
weakness and left thumb immobility after an intense seizure
(she always styas conscious, however). We consult with Doc Spence and
decide on
gamma-knife radiosurgery (conventional surgery is discouraged by
neurosurgeon due to location). Despite the bad news Steffi writes "I am
very anxious but I am very hopeful" and she relieved that the chemo is
over for now!
|
July 16, 2004
|
We need a break from the bad
news and drive to Mount Rainier NP for a camping weekend. The weather
is nice and we have fun hiking. We hike up to Norse Peak in the Crystal
Mountain area, then camp at Cougar Campground in the park. The next day
we
do the
Kautz Creek hike, one of our favorites. Steffi is doing ok but does not
feel as strong. On the Kautz Creek trail we reach the cabin but turn
around earlier than usual. Still, a very good hike!
 
  |
July 24, 2004
|
We go hiking again, this time to
the Spider Meadows. A fantastic area and we regret not having brought
our tent. It is very hot and on a steep part of the trail Steffis
suffers a strong seizure. When it is over she still wants to continue
up, so that is what we do and we make it.
 
 
|
July 31, 2004
|
On the weekend before the
gamma-knife radiosurgery Steffi and I go hiking again. There is no
better way
to relax some. We do the Rachel & Rampart Lakes hike. Steffi feels
weaker and more tired than usual. She takes new anti-seizure medication.
 
|
August 8, 2004
|
The day of the gamma-knife
surgery at
Harborview Medical Center. We arrive around 6:30 in the morning. The
preparations start at 7 am. Steffi undergoes a pre-op MRI. When Dr.
Douglas sees it he is concerned, the images show strong progression
since
the last MRI just two weeks ago. There is additional enhancement
adjacent to the original tumor site. Steffi is very nervous, we do tell
her the MRI results. The frme is mounted to her head and she is very
brave, even making some fun. Then we have to wait for the procedure to
start. Steffi is brought to the treatment room, a heavily shielded
room. We brought some of Steffi's meditation/ relaxation CDs but when
she is readied into the machine and the helmet locked in and the music
plays, she starts crying. It is heartbreaking. We calm her down, the
doctors are really nice. We change the music and Steffi finds her
bravery again, she is ready to go through this one more treatment. We
have to leave her behind, alone in the room. This is very hard. Two
sessions at 45 minutes each follow, the helmet is changed between
sessions. Then she is done. The doctors discuss the images. Steffi, for
the first time, does no want to see them. So I go at look at them and
listen to the doctors. Although the pre-op MRI is concerning, the
procedure went well and all areas showing enhancement could be treated.
The gamma-knife team, nurses and
doctors, are wonderful. After the treatment Steffi stays home for the
week and concentrates on getting her left thumb and index finger
mobility back. Then, she continues to work
full time, still goes running with me. Her left arm becomes weaker,
however.
|
August 14, 2004
|
 The Gothic
Basin on the Mountain Loop Hwy is another favorite hike of ours. The
hike is more exhausting this time, the gamma-knife treatment shows
effects. Nonetheless, we make it all the way up and have a very good
time. Back at home we do what we love to do, BBQ and watch a movie
later on. Good weekend.
|
August 17, 2004
|
Steffi starts loosing her hair
again on the site of the gamma-knife treatment. She is very depressed
at times. Her left hand is weak and she feels it is getting worse. The
next 2 weeks are up and down and up again. Because of the left hand
weakness Steffi had to take the bus to work, she doesn't like that at
all, and I don't like riding alone, either. When her hand feels a
little stronger she bikes again and that makes her very happy.
|
August 31, 2004
|
First post-gamma-knife MRI: The
images are discussed at the Tumor Board meeting and the result is good,
no further tumor growth. We are relieved. |
September 3, 2004
|
Labor day weekend. We rent a
cabin at Mount Baker and go with Guenter & Annemiek, Cynthia &
Jan, Hans-Gerd, and Andreas. We have a hot tub and a
pool table, very much fun. The weather is mixed, rain all day on
Saturday, not much hiking. Sunday is nicer, cloudy with sunbreaks. We
hike to Lake Ann and get a glimpse of Mount Shuksan. A black bear
family is in sight, too, feeding on blueberries. This will be our last
real hike together.
Guenter and
Steffi.
Steffi on the trail to Lake Ann.
 
Steffi and I in front of a Mount Shuksan
glacier.
Hiking out: Steffi, Guenter, Cynthia.
 
Mount Shuksan shows off.
 |
September 13, 2004
|
After the gamma-knife Doc Spence
strongly recommended that Steffi tries another chemotherapy. We let it
linger for a bit, Steffi needs a break from all that but then we decide
to go for it. This time it will be not as easy as taking a pill
(Temodar). On September 13 Steffi is admitted to the UW hospital for
the BCNU/ cisplatin infusion, 3 nights in a row. In the morning before
going to the clinic she goes running at Shilshole. On the first
infusion Steffi starts crying and it is heartbreaking again. We both
don't have a good feeling with this chemo and we regret that we decided
to do it. But Steffi is brave again. I spend long hours at her bedside
and every day
we take a walk outside. Steffi is weak but fights. |
September 16, 2004
|
Steffi is discharged and we are
glad to go home. She is weak, tired. The following week she starts
working again but her arm is getting worse, it feels "heavy &
cold", she writes. She cannot fulfill her duties as usual, cannot
multitask anymore and she used to be so able to do that. It makes her
depressed but she works with Fred on her good spirits and it works. She
cannot ride her bike anymore and that is very, very hard. We still go
running together but now Steffi runs at her own slower pace.
|
October 1, 2004
|
American Brain Tumor Association
meeting in Seattle. A meeting for the patients. Of course, we go and so
does Cathleen and Matt and all the other patients from our support
group. We get a chance to share our stories, lifes with new people, a
sometimes very moving experience. Steffi draws strength and hope from
her interactions with other patients. She meets Teresa, a GBM IV
patient
just like her and a survivor for many years now!
|
October 28, 2004
|
Second post-gamma-knife MRI: The
result is not clear at all. There is enhancement but this could mean
necrosis from the irradiation or tumor growth. Doc Spence recommends
PET scans with labeled glucose
and thymidine to determine metabolism and cell proliferation in that
area. Another problem arises, Steffi's Achilles tendon becomes very
inflamed and is hurting, keeping her from running now. She always had a
problem with a bone spur but now the steroids that she takes to control
brain swelling are affecting the healing process in her foot. |
October 31, 2004
|
Halloween: Steffi and I get
ready for Discovery Park. She wants to walk the loop trail, I want to
go for a run. When I get the car I hear her painful scream outside.
While
stretching her foot a little bit her Achilles tendon ruptures. We
decide not to go to the emergency room, we actually don't think it is
very serious. The next day we talk to Doc Spence and he sends her to
the ER immediately. The ER doctor thinks it is a ruptured plantaris
muscle (because that is what he had before, he explains). From now on
Steffi cannot bike anymore. Later on, she visits a podiatrist and he
immediately gets the diagnosis right. Surgery is not an option,
however, because Steffi needs to take steroids. Despite all that she
continues to walk instead of running.
|
November 8 & 10, 2004
|
PET scans: Steffi is
anxious to get the results and when we get them it is bad news. There
is tumor activity and again we can choose from different chemo
cocktails. We decide on an etoposide/ accutane combination. We hope.
Steffi continues to work but takes Fridays off and focuses on her
self-healing powers more. She continues to work with Fred and Danielle
and often gets an energy boost from her sessions.
|
November 24, 2004
|
Steffi bakes a birtthday cake
for me. It takes her 2 hours with her one functional arm/ hand but she
gets it done and is proud. A very good cake!
|
November 25, 2004
|
Thanksgiving and my birthday. We
go to Miga's house to celebrate. We take my BD cake there and Steffi
warns everybody that there may be eggshells in it because she only had
one hand to make it. People still laugh when they think about her joke
and admire her attitude. We start to think about applying for long term
disability. It has become very difficult for Steffi to keep working and
being satisfied with her performance. She wants to do her job 100%, not
less. Her ability to concentrate
suffers, too, and she is very frustrated.
|
December 4-11, 2004
|
Trip to San Diego: We go on a
one week trip to San Diego, what a relief. We enjoy the zoos, parks and
the
beaches. We go on some hikes, shorter this time but we have a great
time. Steffi is glad that we travel again, have a vacation together.
Steffi’s arm is
getting much worse, however. I am very worried. Back in Seattle we
consult with
Dr. Spence and he thinks it could be due to increased swelling around
the
tumor site. He prescribes furosemide (diuretic). We are relieved in
some way, happy to leave the clinic with a not too bad result and some
reason for hope.
We can look forward to Christmas now without having to go back to the
clinic. Steffi’s arm is not
getting better, however. She also looses weight, basically muscle mass
on left leg and arm. December is a tough month, lots of changes.
At the Aerospace Museum, Steffi in front of Apollo
9.
At the Wild Animal Park. Steffi and Californian Condor.
At the Mission San Luis Del
Rey.
At Torrey Pines Park & Beach.
|
December 13, 2004
|
Back in Seattle another MRI
awaits us. The result is good from our perspective, no new tumor
growth. We consult with
Doc Spence and he thinks the worsening of Steffi's arm could be
caused by increased swelling around the
tumor site. He prescribes furosemide (diuretic). We are relieved in
some way, happy to leave the clinic with a not too bad result and some
reason for hope.
We can look forward to Christmas now without having to go back to the
clinic. Steffi’s arm is not
getting better, however. She also looses weight, basically muscle mass
on left leg and arm. December is a tough month, lots of changes. |
December, 2004
|
Steffi stops working in the lab,
goes on
medical leave and we apply for long term disdisability. This is a very
hard step to take. She loves her work, the
interaction with people. We try to believe that there is always a way
back, back to work, back to a normal life.
|
| December 24, 2004 |
Christmas arrives, we are happy.
We choose our second tree at our favorite produce stand, decorate it
together (I'll do it, Steffi directs me this time). We celebrate our
second Christmas eve together. It is wonderful but
also bittersweet. Steffi's brother Joerg visits from Germany. Steffi is
very, very happy to see him. We go to church on Christmas eve.
Afterwards we have a funny eve with Annemiek
&
Guenter and home-made swiss cheese fondue and plenty of good wine and
some schnaps. An evening to remember.
|
December 30, 2004
|
Joerg leaves. We drive him to
the airport. We have coffee together, then it is time to say 'goodbye'.
It is hard, lots of tears. Steffi thinks she will not see her beloved
brother again. But she will.
|
December 31, 2004 Sylvester
|
Another New Years
Eve (Sylvester): This year will be quiet. We are not in a mood for a
big party and many people. We are
invited at Guenter's house but decide not to go, it would have
been too much. So we hook up with Peter & Lara, our friends and
neighbors, and have dinner
together at their house (good sushi!), We drink wine, talk, have fun
and watch the movie 'Napoleon Dynamite'. At midnight, for the first
time
we watch the Space Needle fireworks on
TV! We go home shortly after, Steffi is very tired and needs sleep.
2004 ends and it has been an extremely difficult year for Steffi, for
us. If it wasn't
for Steffi's strength and optimism I might have given up.
|