I want the Icing!  

On the cruise. Good, but it is all about the icing…

I left off last time saying that we were in limbo as to what to do.  Super Doc said I would hear the plan the next week.  The Tuesday after Labor Day the radiologist’s office called for a consult.  I expected that.  Then the brain surgeon’s office called.  What?  I know nothing about this!  I emailed Super Doc who called me right away and explained that the surgeon now thinks he can get it out.  The whole team is on board.  I was shaking in my boots.  Brain surgery?  That’s disgusting!  But I finally came around.  To feel better again would be fantastic, regardless of what I have to go through to get there.

Surprise again.  I met with the surgeon late yesterday.  Turns out I misunderstood.  He said the surgery will not make you feel better.  The damage has already been done.  If it does make you feel better, it would be “icing on the cake.”  The person with me (friend, medical advocate, and health care proxy) and I were in shock.  What?  Then why are we doing this?  The only reason is to see if there are cancer cells in the remaining blob or if it just radiation damage.  That knowledge will determine future treatments.  I was devastated.

When I got home, I emailed Super Doc who responded right away.  We had several exchanges over which he confirmed what the surgeon said but also gave me more things to think about.  If we start chemo prematurely, that would be a waste (we want to delay that as long as possible).  If we take it out, radiation will try to take care of remaining cells.  If we do nothing, my symptoms get worse.  And…he said that once that area is stabilized, then we can work on rehab and physical therapy to try to get remaining brain tissue to recalibrate so I can walk better. 

The surgeon was brutally honest.  They will remove a large plate of bone out of the back of my head and then put it back with titanium rods.  That will make recovery quite painful, especially the first week or so.  For him, this is routine.  He told me how he would get to the big guy without damaging anything on the way, and he will also remove the newest spot that appeared since it was on his way. 

Almost as a joke, we asked if someone could take photos.  And he said yes!  If I hand him a disposable camera, he will take photos through the microscope and if I can convince a nurse to use my cell phone, that person can take photos as well.  If you know me, you know how excited I am about that!

Surgery is this Friday morning at 7:30 am at Johns Hopkins Hospital.  It should take around four hours.  At some point a friend will come on to my blog to post updates. 

See you on the other side!

Travels and Tumors: Update

Two friends and I took a cruise to Bermuda and had a blast.  Relaxing on my balcony, enjoying the fun excursions, and spending time with my caring friends made it all worthwhile.  To see some photos, look above and go to Menu, Travels with Teddy, Bermuda.

I mentioned last time that I wasn’t feeling well.  Doctors were convinced that the big tumor swelled because of radiation damage so they put me on another steroid surge with a three-week taper.  It didn’t help, and I continued to feel worse.  I had my first fall during the cruise.  The weekend after we returned, I became very ill, just sitting in my chair and feeling as if I was getting chemo.  I just didn’t want to move.  Weak, nauseous, body swinging all over the place, and…a headache which totally freaked me out. 

I emailed Super Doc (the attentive doctor who specializes in brain metastases) Sunday night.  He put me back on a medium dose of steroid and got me in three days later for the study MRI at Johns Hopkins that can provide more detailed images.  When he saw me in person for the first time in two months, he was struck by the progression of my truncal ataxia (lack of coordination and walking as if intoxicated).  The MRI showed that the big tumor is the biggest it has ever been, and he now thinks that there is probably active cancer growth, in addition to radiation damage.  But he cannot be sure, even with the special high-power images.  The only way to know is to do a biopsy and the surgeon will probably refuse.  More bad news – there is a second small lesion, so we are up to three – two small and one gigantic.

He recommends radiating the little guys and starting the chemo, the chemo that you should delay as long as possible since once you start, it is a forever sort of thing.  Side effects?  Fatigue, nausea, hair loss.  Lovely.  But the worst news is that no one knows how to make me feel better.  A month ago, we decided that if steroids stopped working, we would try a drug that limits blood growth to the big guy, but now that we are considering active treatment, that option is out since it would hinder the chemo getting to cancer cells and make the blood brain barrier even more problematic.

So, we are in a bit of a limbo.  Super Doc from Johns Hopkins and my team at Sibley are trying to come up with a plan, and I should hear something next week. I will need to make clear my desire for quality time, not quantity. In the meantime, I hope to go to Cape Cod in a few days.  I have never been, and it is the easiest sort of trip I can do.  The doctor said he was glad I bought cancellation insurance.  But I am not yet ready to give up my adventures!

Return to Reality

Olympic National Park, WA

Yes, it took a week to get back, and what a slog.  Insomnia returned and trying to do something dangerous (driving), while you’re afraid of feeling sleepy, is its own form of torture.  I stopped a lot and took naps in rest areas.  My goal was six hours a day.  A day of rest in Illinois was a delight.

The weeks after returning were challenging.  I usually go into a funk after traveling, and then some frustrating mail and regular life came back.  And I wasn’t feeling good.  And very tired.  Take me back to the mountains! 

But the first five weeks of my road trip were absolutely fantastic.  It was great to meet up with family and friends, exciting to see so many animals, and the scenery was incredibly beautiful.  I also enjoyed spending time with myself, and temperatures remained in the 60s and 70s.   Although I decided not to do those last couple of weeks of my original plan (triggered by the cancellation of Yosemite due to fires and knowing that I was entering into intense heat), I still ended up driving almost 10,000 miles.

And my new brain doc out of Johns Hopkins in Baltimore made it happen.  He put me on a steroid surge to make it more manageable, checked on me during the journey to see how I was doing (can you believe?  I love this guy!), and then when I let him know that I was becoming wobbly again, he called me!  😊  I started taking a daily steroid.

By the way, I learned the name of my condition:  truncal ataxia.  It means that my gait looks like I’m drunk.  It became worse in the last couple of weeks, and sure enough – the MRI showed that Teddy (my biggest tumor) grew by a cm and is about the same size as it started.  My brain doctor (and the radiologist from the subsequent PET scan) both agree, however, that it is a consequence of the radiation.  All this dead tissue is building up, irritating the brain, and the swelling is causing the return of symptoms.

What to do?  He put me on another three-week steroid surge.  I’ve also been asked to join a study at Johns Hopkins that would involve monthly scans to see how long the benefits last.  If they don’t last long again, there is a medication that might help.  I asked about doing another round of radiation, but he pointed out how delicate that area is, so it should be last resort.  My radiation oncologist must have done a fantastic job because I don’t think any damage was done to healthy tissue (maybe others would disagree?  😊).  The smaller spot has doubled, but it has been assigned to “watch and wait” status.  There is a chemo available, but we should delay as long as possible.  The good news is that no other spots have appeared in the brain and the PET scan shows that it hasn’t reappeared elsewhere in the body.  My situation is atypical (of course!) and next steps ambiguous.  After the next scan, my medical oncologist says she might suggest I see her colleague at Dana Farber in Boston. 

Life goes on.  I have cancelled my more difficult travel plans but have added easier trips.  People have commented on my good attitude.  Hah!  It becomes much harder when I don’t feel well.  There have been times in the last couple of weeks that I felt like I was getting chemo again.  But feeling sick when getting chemo is different because you know you just need to get through it, and you hope it is doing some good.  But when you feel sick with the chance of no positive impact, that is a completely different story.  As with whatever challenges I have faced in life, it certainly makes me more empathetic to the suffering of others, especially people with chronic conditions.  But the worst type of suffering must be the loss of a child.  I watched the online service for two of my former students, lost to us so suddenly and way too soon.  The rabbi pointed out that we cannot control events, but we can control our reaction to them.  These two girls also taught us how to live life joyfully and exuberantly, for as long as you have.  My mantra continues to be, “you need to play the cards you were dealt.”  That’s all we can do.  Thank you all for your continued support.  The connections made through lunches, calls, texts, meals, etc., are all very much appreciated. 

P.S.  I have added to “Travels with Teddy” in the menu above.  There are photos from this road trip, as well as a week on Oak Island in May.  Thanks for following my journeys!

Turning East

I’m heading home.

Hoh Rainforest, Olympia National Park

The fire in Yosemite stymied my second attempt to get there (the first was because of snow).  Other plans included areas with intense heat.  It suddenly felt right to end this journey and head home.  I had a great run.  Six weeks is enough.

Since I last wrote, the trip continued to be filled with extreme beauty.  Lopez, one of the San Juan Islands, is very laid back and peaceful.  I had the most adorable little cottage, took several gorgeous walks, and spent time with my mom’s friend. 

After a bit of a planning mistake (because I didn’t realize I needed to take a ferry to the Olympic Peninsula, I had no reservation so was extremely relieved to get on a ferry at all!), I made it to my new wonderful place on a river.  I thoroughly enjoyed exploring Olympic National Park from a still snow-covered path on Hurricane Ridge, to the green stillness of the Hoh Rainforest, to the amazing rock formations of Rialto Beach. 

I then drove to the Seattle area to visit with a cousin and his family.  It was so great to see them.  I took my poor car to be serviced and then turned it eastward, perhaps just in time since I am noticing more dizziness.  Maybe it is just because I am tired.  Who knows?  I am only driving about six hours a day, so it will take a good week to get back.  I am extraordinarily grateful to have had this adventure!

On The Road Again

Near Golden, British Columbia

On the road again. And alone again.

I just spent ten days traveling with a friend in the Canadian Rockies, a trip we planned three years ago but postponed when it became clear I would be in the throes of chemo.  We had a fabulous time.  My highlights?  1 – the incredible wildlife we were blessed to witness, including a nursing black bear and her three frolicking cubs.  2 – the amazing scenery of overwhelming mountains, emerald lakes, and beautiful reflections.  3 – getting to share the adventure with another human being.  I enjoy solitude but travelling with my friend was awesome.  Today I dropped her off near the Calgary airport.

It was decision time.  Do I continue or give up and go home?  Going home is not that easy.  We’re talking five 8-hour days of driving.  And when I get home, then what?  Once I was able to shift my way of thinking from “I’m dying of cancer in the brain” to “I’m living with cancer in the brain,” things seem different. If I can function relatively okay, that is.

Before leaving on the trip, my newest doctor put me on a steroid boost to help me walk better.  He gave me his blessing to go and seemed determined to make it possible.  This is the guy who gave me his email address and his cell phone number.  Well, guess what?  He checked in to see how I was doing on the trip!  I love this guy.  I was doing okay at the time but then became more and more wobbly about a week ago.  I messaged him and he called me on my cell phone.  So sweet.  I am now back on a low-dose steroid, but even though I take it early in the morning, it still seems to wreak havoc on my sleep.  I may try to stop them once out of the mountains.  It is a fine balance, but I will deal.

And thus continue.  I have completed my first month of the road journey and have a month to go.  I head west tomorrow.  After spending the night in Hope, British Columbia, I will stay several nights on Lopez, one of the San Juan Islands, then the Olympic Peninsula of Washington, and then with a cousin west of Seattle.  After that relaxing interlude, I head south through California (Redwoods, Yosemite, Santa Barbara with a friend, Sequoia, and Death Valley).  Then I head back East with interesting stops along the way.

I hope you are all enjoying your summers, while avoiding the intense heat I have been hearing about.  I think my cool days are over! 

From Somewhere in the Center of the U.S.   

The week on the beach in North Carolina was beautiful.  My friends and I had a very relaxing time reading, eating, and enjoying each other’s company.  Someday I will post some photos.

My last MRI at the end of May showed the area around the big tumor becoming inflamed again.  That explains my worsening sense of balance.  The good news is that no more spots have appeared (beyond the little spot I have in addition to the big one).  I will continue to have MRIs every three months or so. 

I had a virtual meeting with my brain doc from Johns Hopkins.  He spent a lot of time with me doing some tests through the screen.  He was very encouraging regarding my road trip and put me on steroids for a week to try to get my balance back.  He also gave me some medicine to take when I go to high elevations.  And, he gave me his cell phone number!

As the school year wound down, I attended Class Day.  They added my name to the Community Service Award.  That was quite an honor.  I also received a box of beautiful notes from past parents, students, and colleagues.  Very sweet.

And now?  I’m in South Dakota, having begun my road trip over a week ago.  I spent four days in northern Illinois visiting friends, family, and saying hi to my folks.  (Well, I had a conversation with them where I put their ashes last summer.)  Then I headed west and visited with a friend in Iowa.  I am now playing tourist.  The Badlands and Black Hills regions of South Dakota are beautiful, and I got to see bighorn sheep, prairie dogs, pronghorns, and bison with their babies. 

I will soon continue northwest and stop at Glacier and Waterton Lakes National Parks before picking up my friend in Calgary.  We’ll then finally explore the Canadian Rockies, a trip that was delayed after my initial diagnosis two years ago.  After that?  I don’t know.  I have another month of reservations made, but I also might decide to head home.  Although I will be about 5 days of driving from home at that point! 

End of a Career

Roosevelt Island, DC

It’s been over a month since I last posted.  I haven’t felt like it – not sure why.  I guess when I’m having a bad day, I’m too depressed.  And when I’m having a good day, I forget.  I’ve even had moments when I think this is all a mistake.  Maye it was someone else’s brain scan?  When I read about other people experiencing that sense of forgetting/denial, I couldn’t believe it.  Well, I’m here to tell you, it happens!


After 38 years, I no longer go to school every morning.  On April 14th, I told my students that the following week would be my last.  We gathered all the eighth graders together at once.  I said this was my last chance to give them advice, so I was going to take advantage of the opportunity!  I told them: 1) if they can find a career that is both enjoyable and meaningful, as I had, they will be very fortunate people indeed. 2) Stay in community and make connections.  And if they find themselves part of a supportive family, they should consider themselves super lucky.  3) Be good.  Do good.  To yourself, and then others.  They will feel happiest when being kind.  4) Enjoy your life while you are living it.  You never know when it will all come to an end.  And all of this will be easier if you can always feel…5) Gratitude.  Be thankful for what you have, rather than focusing on what you don’t have. 

I expressed gratitude for their kindness towards me.  And then I was open about my situation and my road to acceptance.  “I believe that our bodies our borrowed from the dust of stars.  Everything that is made of matter is all made of the same stuff.  I believe that what continues of us is the love in the people with whom we have made a connection.  None of us knows the length of our lifespan, but we make the best of every day that we are given…What do I need from you? What I told you in February – to continue to be the good people that you are.”

Friday, April 22, Earth Day, was my last day.  It was an incredibly sweet day, and a perfectly horrible day.  Lots of people sent kind texts.  Others came to see me.  I tried to conduct somewhat normal classes, but the kids were weird.  My boss observed the last ten minutes of a class.  My students had a special event for me at lunch which included a cake decorated with elements, a blanket with all their photos, and each student made a hand-made card.  Individual students sought me out for their own special goodbyes.  Graciously accepting loving kindness is not yet in my skill set, so I wasn’t my best.  Poor kids!  Some colleagues held an event for me after school.  I appreciated it all, but it was a long day.

Brain Update

The MRI on April 20th showed that the radiation shrank the tumor by a third.  I knew that “Teddy” had cooperated and shrunk some because I have been feeling so much better.  A big halo of inflammation is gone as well, although the steroids might have done that.  The tumor is no longer pushing into the ventricle, so the danger of hydrocephalus has lessened significantly. 

This week I met with a doctor at Johns Hopkins Hospital who specializes in brain metastases.  I really like him, especially since he gave me his email address!  I feel cared for again.  His resident conducted a bunch of tests on me.  I passed some (I remembered the words he gave me; can I be president now?) and failed others (some eye/hand coordination tests and some involving walking).  He encouraged me to travel and to just take some steroids when I change elevation significantly.  He reiterated that the big tumor is no longer an immediate danger but did say that the smaller spot did not change at all.  And that brings us to the real danger going forward – more spots.  I will get an MRI every 2-3 months and if/when more spots appear, we will talk about systemic treatments.  There are three available.  All are relatively new.  We won’t start any now because they are toxic, and once started, we probably won’t stop. 

Like I said to my students – one day at a time.  Such a cliché, but so true. 


I spent the last two weekends with friends in Pennsylvania, Connecticut, and Virginia, and yesterday with another friend on Roosevelt Island.  I was supposed to go to Israel next week, but National Geographic cancelled the trip due to the recent incidents of terrorism.  Instead, I will spend a week with friends on the coast of North Carolina.  I’m looking forward to it!  And then another MRI, and I hope to begin my big road trip the second week of June. Until next time – happy Spring/Summer!

The Good, The Bad, and The Ugly

The Good:  I made it into “my” woods the first weekend in April!  That is huge.  Teddy must have shrunk some due to the radiation because I was feeling a lot better.  And with my hiking poles, I was able to walk a bit, along Cabin John Creek among the budding spring vegetation and singing birds.  So beautiful.  And wow, I am out of shape.  After 3 months of eating too much, moving not at all, and insomnia, things feel a bit different than last summer.  But it was wonderful.  I repeated it the next day, going a little further and climbing a little hill before heading back.

The Bad:  If you don’t like reading about medical stuff, please stop reading now.  I finally had my appointment with a neurologist, the appointment that my ENT recommended before it was even confirmed I had something wrong with my brain.  I liked him a lot.  My main goal was to find out what will happen to me.  I found out.  It was all very scary and depressing.  But I asked, and he told me.

Teddy is an especially large tumor, given where it is located.  There is not a lot of room there.  He’s between the channel necessary for liquid flow and the brainstem.  Two things will happen.  The first is hydrocephalus.  When the tumor swells enough to close off that channel, there is nowhere for it to go, the brain swells, and I will suddenly feel very ill but with nonspecific symptoms (headache, lethargy, nausea, etc.).  If I get myself to a hospital, there is a solution.  They can put in a shunt to change the path of the liquid to somewhere else, but there may be no point if the second thing that will happen is imminent.

The Ugly:  The second thing that will happen is that the tumor pushes into the brain stem which is right behind it.  When that happens, it’s all over.  I lose the ability to speak and swallow.  Morphine and hospice and that’s it.

Given that I am feeling much better, the neurologist says it is okay to fly now, but probably not much longer.  And he raised a point I hadn’t considered – high altitude problems.  He recommends I stay away from high elevations because that means lower air pressure and thus more swelling of the tumor.  So give me a number, I said.  He threw out 5000’.  That’s not that high!  I looked through all my plans for my summer road trip.  Interestingly, the Rockies in the US and Canada probably shouldn’t be a problem.  My plans for Sequoia National Forest and Mesa Verde had to be cancelled. 

So, that’s where we are.  And I’m not feeling as good as I did last weekend.  Which is kind of freaking me out.  Maybe it’s just because I’m tired. 

May we all enjoy, as much as we can, every day that is given us.  For those of you celebrating religious holidays during these weeks, enjoy them especially.

Travels with Teddy

I teach.  I travel.  That’s what I do.

Northern Lights, Iceland 12/27/21

I decided not to return my contract for next year.  It’s not fair to my beloved school to try.  I can continue for a bit more, now, because my students are well trained and working independently at the moment. 😊 But also, it might be fun to keep space open to do other things for the times when I am feeling good. 

I never wanted to be a teacher.  I needed a job.  I took a teaching job in Kansas and fell in love with it.  And now, after 38 years, I am hanging up my hat.  That feels very strange.  Although my decision seemed obvious to most everyone else, it took me a while to get there.

Thank goodness I was not one of those people who waited until later to have adventures.  (Don’t do that people!)  I have had the great fortune of travelling all over the world without my brain tumor, Teddy.  Although Teddy is now with me, I still am planning trips.  We’ll see.  Day by day.  Planning is still half the fun anyway! 

Over Winter Break I went to Iceland to enjoy Christmas time in Reykjavik and join five other teachers to explore the countryside.  The main purpose of going in the winter was to maximize my chances of seeing the Aurora Borealis.  And I did!  Although I didn’t know it at the time, Teddy was with me.  He tried to make himself known, but I didn’t understand.

I added a new section to this site called “Travels with Teddy.”  The first entry is a small collection of photos from Iceland.  If you would like to check it out, you can look at the top of my site to find Travels With Teddy and scroll down to see Iceland, or click HERE.

Steroids have been reduced, and I am beginning to sleep better.  Halleluiah!

Enjoy the Spring.


Sometimes it’s about the journey, sometimes the destination, and sometimes, it’s just about the mosquitoes.  (Paraphrasing Gary Larson)

The Mask, my souvenir

Mask Making

To get multiple radiation treatments for the brain, a mask is made to keep the head still.  And I mean still. 

I was so tired the day they made it that it began in a very relaxing way – two people pressing what felt like hot, steaming towels into every crevice of my head and shoulders.  Very nice.  Then they blew fans to cool and harden it.  They pulled the mask away from my face and then snapped it back down.  It was so tight around my neck I immediately grunted (speech is not possible) to complain, and they loosened it.  A bit.

Then they put me in the CT scanner.  Pulled me out and did some laser markings.  Put me back in.  Waited for the doctor to do her measurements of the CT overlay on the MRI scan.  The mask was still so tight on my neck that I could feel every heartbeat.  I already have an arrythmia, and the steroids made it worse.  Those 40 minutes were a psychological challenge, but I made it through.  Once finished, I said something again.  They got a hot gun and loosened the neck up some more.  Thank goodness.


I finished the last one this week.  I had five sessions of Fractionated Stereotactic Radiotherapy in which targeted beams come in from different angles.  There were four separate zaps during each session.  Two involved moving the table I was on, while I tried not to get dizzy. 

The first thing they do is snap down the mask.  Then they pin your arms down with a metal bar.  Then they go away, and you wait.  And wait.  Then you hear a voice reassuring you everything is okay, but they are waiting on a doctor to approve the images.  Then you hear the machines moving, strange lights and smells, and adjustments between each of the four, minute-long zaps.  I talk with Teddy throughout.

The most challenging part remained the mask.  It was so tight that I realized I finally have eyelashes growing in after the chemo that ended a year ago.  It was so tight that when my nasal passages swelled from a light allergy, I struggled to move my skin so that I could open my mouth a bit to breath.  It was so tight I always came out with waffle face.  I learned to prep with antiarrhythmic meds, Afrin, and lots of calming meditation.  It’s finished.  Phew!

And now we wait

There are two brand new chemo drugs out there for HER2+ breast cancer that cross the blood brain barrier.  For a variety of reasons, including side effects, we will wait to see what the radiation does before deciding on next steps.  My next MRI is towards the end of April.  Because of necrosis, images may not yet be clear. 

Prognosis is about a year.  The meds can increase that to two.  But it comes back to “large” and “badly located.”  My goal is to feel better.  My physical therapy for balance has provided hope as I learn to walk normally again.  And as I begin weaning off the steroids, I look forward to the joys of sleep!

People have been so kind and generous.  I truly feel blessed to have all of you in my life.