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!
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!
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!
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.
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: 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.
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!
Sometimes it’s about the journey, sometimes the destination, and sometimes, it’s just about the mosquitoes. (Paraphrasing Gary Larson)
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.
The night before my first radiation treatment, I felt the need to invite my tumor to tea and have a little chat. I named him Teddy. Well, during the middle of the night (sleep remains elusive) I thought about potential names. I like Charlie, but “Travels with Charley” is taken (Steinbeck’s book is great). I ran through the alphabet and thought of Freddie, but early the next morning a friend pointed out the horror film, and some guy even wears a mask that looks like mine. Yeah, no. Teddy it is.
“Now Teddy. I’m a little confused as to your intentions. If you were a parasite, you would know that it is not in your best interest to kill off your host so quickly! How about if we make a deal.
If you shrink enough so that I can enjoy hiking in the woods again, and I can recover some hope of going on my planned trips this year, maybe we can work something out and learn to live together.
Radiation starts tomorrow. I would like you to slim down some so you are not swelling so much into my part of the brain. What do you think?”
He was a little quiet. I hope he was listening.
My weekend, so far, has been positive. I got some more sleep and am spending time with good friends. I am also enjoying the daybreak from my balcony, while reading Jane Goodall’s latest book: The Book of Hope, A Survival Guide For Trying Times. Her way of thinking is so desperately needed for our species. It’s an easy read, and I highly recommend it.
(By the way, although I decided not to respond to comments, I read and appreciate them all. Thank you.)
Good news: We’re going with targeted radiation, instead of whole brain.
Bad news: Everything else.
Fortunately, I had a friend with me for my big meeting with the radiation oncologist. We began with the nurse for “patient education.” That’s when we learned that the plan is for five days of targeted radiation – a tremendous relief, and I was so happy! And because there are multiple treatments, I would have a mask made to hold my head still, instead of pins screwed into my skull. All good.
And then the doctor came in.
My friend and I are both naturally curious. “Could we see the MRI image?”
Oh, wow. (I might have said something else. I don’t remember.)
Friend to doctor: “In the grand scheme of brain tumors, how big is that?”
Doctor: “It’s big.”
Me: “So what is my future prognosis?”
Doctor: “Well, if the tumor was in a better place, people can live five years.”
Me: “But mine is not in a better place.”
Doctor: “No, it is not.”
She explained that the radiation has a 50/50 chance of reducing the size of the tumor and thus my symptoms. This will require constant surveillance and attempted management.
The paperwork I signed stated that the purpose of treatment is “palliative intent.”
Well, okay then.
It’s been a week since I heard that. The longest week ever.
Or maybe it is something entirely new. Regardless, I have a brain tumor.
After six weeks of balance issues and constant nausea, I went to my ENT who ordered lots of tests, starting with an MRI. And there it was. 2 x 2.1 x 3.6 cm tumor in the part of the brain that controls movement, balance, and coordination. (Imagine a list of obscenities here…)
Things have been moving very quickly since then. The most depressing information came from a neurosurgeon: too deep to operate (it’s smack in the middle of the brain) and too big to do “gamma knife” (focused radiation). He suspects I am headed towards “standard radiation” which I understand to be the whole brain. What? I can’t afford to lose healthy brain cells!
I’m hoping that my radiation oncologist will disagree and attempt the focused radiation anyway. We’ll see.
I think back on the previous 32 posts I have done about my 2020 adventure with breast cancer. I included thoughts of love and gratitude and beauty – a lot of sappy stuff. I may return to that later. In the meantime, I am just ticked. And afraid. But as a friend said, you can now use the “I have a brain tumor” card!
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