I have been going to school almost every year since I was 5. That would have been 1961. That kind of blows my mind! Last weekend, my dear, dear Pathfinder teacher friends had a retirement party for me. I have to let semantics go; I do not feel like I retired. Retired sounds like an active choice and something you look forward to; people want to retire. I didn’t really want to stop working, I wasn’t ready to stop. I was stopped in my tracks by the side effects of cancer treatment. I was stopped by cancer. But, really, it is a matter of semantics. I do not have a paying job anymore. I am retired and I had a retirement party.

I was a little overwhelmed and no one would be surprised to hear I cried a bit. But I only cried a bit because I did not try to give some big ole speech. I think I said thank you, I hope I said thank you, but that was about the beginning and end of my speech. On the way home I was thinking about all the things I could have said…but I would never have made it through a speech. I cry easily.

I have been in a school almost every year for 55 years! But you know what is really shocking, I’ve only been in 8 schools in that entire time!
St. Elizabeth’s School (Kansas City, Mo.)
Bishop Hogan High School (KCMO)
George Peabody College for Teachers (Nashville, TN)
Trails West State School (teaching primary kids with autism KCMO)
University of Washington
Experimental Education Unit at UW (infants, preschool, kindergarten special education)
Lafayette Elementary (Seattle)
and finally Pathfinder.

I spent 9 years at St. Elizabeth’s, 10 years at the EEU and 4 or less at the other schools, except Pathfinder. I was at Pathfinder since Maggie was 4! She is 25 now! Wow! Pathfinder has been a huge part of my life in length and breadth. I’ve spent 1/3 of my life as a Pathfinder K-1 teacher. It really is a part of my identity.

One of Pathfinder’s strong suits is its respect for the power of rituals, routines and traditions. In the old days, when it was still a small school, we were able to create and maintain many meaningful rituals and traditions. As the district mandated more and more of what we HAD to do, we were able to choose less and less for ourselves, and at the same time we grew and grew and grew, we lost some of our traditions, others were adapted.

One of our traditions was to purchase and gift a special Pendleton Blanket when a staff member would leave. We would pick it out, just for them, and gift it in a ceremony with the entire school. As our school grew and more and more people came and went it was clear we could not maintain that tradition. But, when someone had been around for a while, was deeply rooted in the community, had put in their time, us old timers would pitch in and buy them a blanket and present it in a small more private ceremony. I was presented with a beautiful blanket at my party. Ami (the absolute best 8th grade LA teacher in Seattle, hands down, no debate) picked out an extremely special blanket for me. I was so moved when I read about the symbolism held in the blanket. Here is a section of the description:

The gift of a feather is a gift of honor. It is a tribute to the courage of the recipient. Throughout Native American cultures, feathers represent strength, wisdom and a connection with the Creator. 
The feather circle on this blanket represents the courage to overcome in the face of struggle. Whatever the future brings, the feather circle encourages the owner of the blanket to face life with strength and hope.

Wow, Ami, I am honored and moved by the words and the sentiments and that you would pick the Honoring Robe for me.
Thank you Pathfinder for all you have done for me. Pathfinder has had a tremendous influence on me. I grew up to be a better parent, a better teacher, a better person because of the people in the community and my experiences along the way.

I needed that gathering, not because I feel retired, I’m really not ready to claim that, yet. But because I needed closure on a very important chapter in my life.

Next chapter…I have no idea and that is ok!

After I was diagnosed with cancer and realized I could not return to work the fall of 2014 I decided to look for a sub rather than just quite and give up my job. I asked a young brand new teacher I knew to take my place. Jessica had gone to school and was a friend of Maggie and Michael. Her brother, Brody, was also their friend. Jessica had subbed for me a few times in the previous spring after she finished her student teaching. Jessica subbed for me that entire year.

The next year, 15-16 I was able to go back to work and Jessica ended up getting a job at the school listed above as number 7. Actually she got a job teaching kindergarten in the very same room where I had taught kindergarten at Lafayette. Isn’t that so weird? The only classrooms she has taught in are the same ones I have occupied! Freaky! Anyway, she is there again this year, her third year teaching kindergarten. The past two weeks I joined her class for math at 11 on Thursdays. It has been a hoot to be around a class of 5 year olds again. They are adorable, and so very busy, of course! I have had a couple of beautiful moments that fill me up. For example, I was helping this one cutie pie with a task that involved many small pieces of paper. He was unorganized and frustrated and said, “I’ll never finish this!” We processed how he might organize his work differently, we did that together, then he saw he was nearly done with the task and lit up! We talked about what had changed his feelings from frustration to success. Maybe he’ll remember that next time, maybe he won’t, but for those few minutes he was feeling successful and in control of his situation. All the kids at his table shared in this exchange. This is one of the kinds of experiences that feeds my soul! This experience is helping me figure out what my next chapter might be.


Speaking of next chapters…

First I need to finish this chapter; my Keytruda chapter. Last Tuesday I had my 6th Keytruda infusion. I saw Dr. Kaplan and he said he thought I looked healthier than I’ve looked in the 2 years he’s known me. I think “retirement” has something to do with that!
My next step is a scan the first week of January. We know nothing about how we will proceed until we see that scan. I have no idea what the cancer is doing. I have no idea if the Keytruda has been effective. I have no idea what the future holds.

There is a funny feeling of freedom that comes from this unknown. It’s hard to explain. I think it really does have some influence on helping me focus on this day and this moment. I’m not very caught up in the what ifs and the maybes because I just have no data, no evidence, no idea what the future might hold. None of us do, obviously. But, somehow, in this situation I think it is heightened. I have this freedom to live these days and just these days. I have today through January 4th, that is what I have, that is all I have. So, I’ll take that! Then on January 5th, I’ll start to figure out the rest.

I am not naive...I know that the closer I get to January 5th, the more anxiety I will have. Right now, I am fine. My anxiety is at bay and I appreciate that. When it starts creeping in, probably about the same time I am turning 61 (yikes!!), I'll deal with it. But now I am good. Now is all we have, right?

And the good news…there is still no pain. NO PAIN. I am so grateful for no pain. I have been going to yoga two times a week, pilates once a week, I usually have a PT appointment as my shoulder is still a little out of whack. I’m walking Wilson when there is not a freezing, pelting or torrential rain. And when the rains show up I go downstairs on the treadmill and the rower. We are eating pretty healthy in spite of the holiday goodies starting to show up here and there. I am feeling straight and even, thanks to my PT. I am feeling strong and resilient. I am hopeful and optimistic. I am also realistic. And, I am pain free!!

I hope you are enjoying this December and this holiday season. I hope you are warm and with people who you love.
Me and Mike and Michael and Maggie wish you all peace and love this season and into the new year. We so appreciate the support we receive from you. You hold us up and help us through and we wouldn’t be this strong without your support.

Love and light to you and yours
From me and mine
Janet

Here is a photo of my Honoring Robe

PS I've mentioned Tara Brach in this blog before. I'm finding her podcasts to be very powerful and relevant for me in my personal battle against cancer as well as how to think about the political battle that is going on these days. I highly recommend her podcast. I listened to one this morning that hit the spot:

https://itunes.apple.com/us/podcast/tara-brach/id265264862?mt=2

or subscribe to her podcast and look for the one titled Spiritual Reparenting 12-7-2016

Don't let the title turn you off, she has some powerful thoughts, messages, ideas...powerful and healing.

Happy Thanksgiving!
I hope your day is filled with love and laughter, family and friends, warmth and good food.
Thank you for all your support along the way. I am so happy to be in a place and time of healing to begin this holiday season. I’ll not take one day of it for granted.

Thanks to all who were able to join us for Trivia night, we had a splendid time with amazing food. The desserts were especially noteworthy! Our preliminary numbers are in… we raised $4194 so far, with a few more checks left to process!

Enjoy your day. I’ll do the same.
Love and Peace to you and yours
Janet

Life goes on, doesn’t it?
One way or another, life goes on.
Wednesday I had my 5th immunotherapy treatment. Swedish was running late, so it took quite a bit longer to go through the process, but otherwise an uneventful series of appointments. I talked to Dr. Kaplan about the timing of my next scan. I’ll have my next immunotherapy treatment in 3 weeks. Then he said I could scan 2-3 weeks after that. That puts us right smack dab in the middle of the holidays. Now, if I was certain my scan would show great results I’d go ahead and do it one of those weeks, right before or right after Christmas and we could just add a good scan to the list of things for which we are grateful. But, alas, there is NO way for me to know that. So, I’m going to wait. I’m going to wait until the first week in January and live through the holidays in the dark, but optimistic and full of faith and hope. I know that my cancer can spread without me feeling anything. It has done it before. I’m optimistic, but have to be realistic at the same time.

Are you coming to trivia night Sunday, November 20?
We are going to have a great time! Come if you can…
Here is what you need to know:

Pasta Dinner served at 6:00
Salad, Dessert, Beer and Wine
Trivia festivities start at 7:00


Tune Event Space
90 Blanchard Street
Seattle 98121

We’ll have teams of 6 playing trivia with a great prize basket for the winning team, including Theo’s chocolate and tours of Theo’s in Fremont (thanks Evan!), passes to Seattle Bouldering Company (thanks, Vinnie!) and more!

We also will have a raffle with some awesome prizes including an air plant in a pinch pot turned by our very own Oliver Bowl Company.

Suggested donation is $28
Raffle tickets just $1

You can bring cash, check or credit cards.
All proceeds go to Fred Hutchinson Cancer Research Institute towards gastric cancer research (or another cancer of your choice).
Fred Hutch gets a good amount of credit for the research into the immunotherapy that I am currently receiving. So, though I am treated at Swedish, I have certainly directly benefitted from the Hutch, as we call it around here.

If you are planning to come and have not RSVP’d you can just let me know, you can RSVP on the evite that I have attached to the blog a couple of times or just show up! The more the merrier!

A painting update:
I was stopped in my painting tracks in September when I had to go into the hospital. I’m happy to say I finished Michael’s room before I went to Colorado so it was all ready for my momma when we came here after Colorado. Now I am nearly done with Maggie’s room. I painted the inside of the closet and in the room I painted 2 coats of primer and one coat of a cream color. I have one more coat to go and then that will be done! What a feeling of accomplishment! And, since I had trouble with colors (and really who doesn’t!) I have a couple extra gallons of paint. I’ll be painting the inside of every closet upstairs and I may even start painting some of the spaces downstairs. Listening to audio books while painting is so rewarding that it makes it less of a chore and quite enjoyable!

As you all know my hair has been growing in for some time. My last chemo was May or June of 2015 so I’ve been growing hair ever since then. It came in corse and curly and did not feel one bit like my own hair. I was rocking and enjoying the curls for a good while. Recently it had been getting longer, quite unwieldy and stopped holding the curl. I finally decided I needed to cut it off. I googled salons in West Seattle, since I no longer bring in a paycheck I could not even begin to justify the amount I used to spend to see Derek at Aveda in Belltown (bye Derek, I miss you). On Monday after yoga I was headed to Trader Joe’s and decided if Rudy’s barbershop (hipster chain in Seattle, maybe elsewhere, too???) was open I was just going to go get it short. Well, it was and I did and it is…very short. Boy short, I call it, all the way around and longer on top. But the best part is that it is my hair again!! It is no longer dead chemo hair, it is my hair and I’m so happy to have it back, even though it is so very short right now!

Is this true for you? I have found in my life, that sometimes the dread of something is much worse than the thing you are actually dreading. It was very true when Michael went away to college. The summer before was ruined for me. I cried at every turn just dreading the thought of him leaving. Then shortly after we left him on his campus in Oregon I realized that everything was going to be OK. That actually this was exactly what was supposed to happen and it was a good thing. It happened again with leaving my job. I was mourning the loss of my identity as Pathfinder Kindgergarten teacher all summer. Just dreading the fall and the return to school thinking about how sad I would be. Well, you know what, I'm actually okay and finally embracing my new found self. I was ok enough to finally venture onto my old school campus. Yesterday was Elder's Lunch Day when kids get to bring grandparents or special friends to school for lunch. Conor's grandparents were not here this year so I got to go as Conor's elder! I ate lunch with Conor and some of his classmates but I also had time to cruise through the building getting hugs and love at every turn. It was good medicine. So great to see the smiling faces of these kids I've loved so much and so many of my teacher friends. I even got up the nerve to peek into my former classroom to see the faces that could have been my daily bread. I ended the day spending a little bit of time in each of the 2/3 classrooms so I was sure to see each of my students from last year. What a gift to me. Thanks Conor for sponsoring me! I had a great day!

I went to see my very dear Dr. Standish this morning. As always she helps me feel strong and gives me a great boost. Just being with her is healing to me. I so appreciate her on my healing team.

I appreciate all of you, too.
Hope to see some of you tomorrow night for Trivia Night.
Happy Thanksgiving
With love
Sending Peace
Janet

Writing this blog has helped me process the fact that I have cancer and the rollercoaster we’ve been on since diagnosis. I tried this morning to write a little to help me process this election…it didn’t help. I’ve felt empty and broken all day. I am heartsick. It is way too soon to talk of healing. We are in the early stages of diagnosis.

I usually stay away from Facebook when I’m stressed as I find it overwhelming. I’ve actually found it comforting today. A few things that have comforted me:
The map that shows how 18-25 year olds voted (overwhelmingly blue).
Harper’s post expressing how she wants to curl up in a ball today (just how I feel) but challenges us all to go out and do something good for someone.
Claire’s post offering her computer skills (of which she has many) to organizations wanting to fight for change.
The posts that have talked about ways to talk to children and the wise words of the children themselves.
Knowing that Hillary Clinton won the popular vote.
Seeing people pouring out their best intentions to be energized to fight for what is right and good.

I know that if I was still in the classroom I would feel stronger, better, that I was able to contribute somehow to the greater good. Home at this computer I really can’t muster that feeling. I need to take Harper’s advice and get out and do good deeds. I need to follow Claire’s lead and offer up my services where I can to fight hatred and bigotry, to fight for what is right and good.
Sending you all my love,
Janet

I am an optimist.
The title of my cancer blog references lemonade, for God’s sake.
But I cannot bend my mind enough to be optimistic.
Somewhere in the deep crevices of my mind I hear my optimism, a tiny voice that says things like, “He’s so unpredictable, maybe he’ll do some things right. Maybe he’ll be more socially progressive than he led us to believe.” But the voice is quickly shut down by the deafening numbness we all carry today. I know I can be naive and the fact that I even hear that voice at all is proof positive of that. I am numb and scared.
Healing has been one of my mantras. I am healing my duodenum, my liver, my lungs, my heart and my soul.
May we all heal.
Love and Peace

The short story is all is well. I am well, continuing my Keytruda infusions, getting stronger, building stamina.
Here is the longer story:

I had an abundance of family time this month. I met Mom and Matt at the Denver Airport and we spent 5 nights playing with the Gilroy gang in Boulder. We had a lovely drive up to Estes Park. Celebrated Kathy’s birthday with pedicures and lunch. Celebrated AJ’s and Kathy’s birthday with a pizza party and much, much more. The best part, of course is having time with all those great nieces and nephews. Love that! The weather and climate in Colorado is so different than Seattle’s. At the same time Seattle was hunkering down for the cold, wet winds from the Pacific typhoon, there was a hot, dry wind blowing through Boulder. I walked with Hunter to the park near Kathy’s house and felt I was walking through a blow dryer! The dry leaves and bits were falling from the trees like rain. We enjoyed stomping and crunching the dry leaves, something we rarely get to enjoy with all our wet leaves in Seattle!

After 5 nights in Colorado, Mom, Matt and I flew together to Seattle where they stayed with us for a week. We had a break in the weather our first day here so we headed straight to Alki to enjoy the beauty of the beach while we could. Day 2 gave us a deluge and we binge watched Jane the Virgin on Netflix. I cooked quite a few meals and we had a big dinner party to celebrate Betty’s birthday. Michael, Maggie and Eva visited with us more than usual, which is always a good thing! Other than that, we mostly relaxed, laughed at Jane the Virgin and took it easy. I have not had that much time with my mom in a long time. It was good. I know she needed that time to be convinced that I am doing as well as I am. And I am doing well!

I saw Dr. Kaplan and had my 4th immunotherapy treatment this past Wednesday. I love seeing my doc. I think I see him as a father figure and I somehow feel like he is proud of me. He gives me his seal of approval and is so happy with how well I am doing. Then I go in for my quick and easy Keytruda infusion. One or two more infusions, then I’ll have a scan to see if the Keytruda is doing its job.

Of course we talked about that coil. I so badly wish there was an easy way to peek into my duodenum to see how my ulcer is healing and to see if the coil is still there. But alas, we just have to have faith. As long as I have no symptoms, we assume all is well. I’ve had no pain at all and no blood. I am almost up to a full and regular diet. I have not yet had really high fiber food, like beans, but I plan to add that in this week. The only foods I will continue to avoid is spicy food and food with tiny seeds (raspberries, strawberries, chia or flax seeds) as they could get lodged in or aggravate the ulcer. It's a huge relief, one month out of the hospital, to be pain free. Everyday without pain is a day of healing.

We lost a good friend this week…
When I was in my late twenties and early thirties I taught special education preschool at the EEU at UW. It was a magical place and a magical time. That was where I met Mike and many other life long friends. There were 4 other women teacher friends I made during this time that remained friends throughout all these years. We all married and had kids within a few years of each other. When our families were young we camped together every summer at Mt. Rainier or Mt. St. Helens. When our kids started graduating high school and then college we had parties to celebrate them each spring. We tried to get together at least once a year. When Jim’s health and my health started to fail, we started to get together a little more frequently. We didn’t want to take our special bond for granted. We didn’t want to lose our connection. Our last gathering was an overnight this past summer at Kelley and Bill’s in Yakima.
Jim had struggled with his heart health for many reasons for years. He’s been through surgery, treatments and ups and downs. When I had heart failure and went to cardio rehab, I joined Jim, who was also in rehab. We bonded as we worked out together in rehab.
We lost Jim this past week. His heart just couldn’t come back this time. His body had fought so hard and so long and he let go with Julie and his two sons, Michael and Aaron by his side.
Last week, before we knew he was struggling, Kelley and Bill emailed that they would be over this weekend and hoped we could all get together. We had plans for most of us to meet up tonight for dinner. Little did we know, at that point in time, that we would be attending Jim’s funeral, instead. Yesterday we attended his service at their temple in NE Seattle. It was a wonderful service and tribute to Jim. Tonight there is another gathering where we will have a chance to celebrate his life and share our stories. Jim was a very intelligent man with an epic and classic love of baseball. Jim was a good guy; funny, clever, generous and kind. We will miss him so.
It does give me pause, great pause, at 60, to lose a friend like Jim. Someone Mike and I grew up with as a family. It seems too soon for this to happen. And, I am acutely aware that I could have been the first of our 10 to go. Everyone, at some level, realizes that our lives can change in an instant. It is true for any of us. We don’t think about it much or we would be paralyzed, frozen in place. Since I’ve had cancer, this feeling is closer to the surface, it bubbles up more frequently and easily than in my pre-cancer days. It’s a blessing in that I am less likely to take life and love for granted. It’s a curse in that as it bubbles up it is frequently accompanied by anxiety. It's a challenge to carry the blessing and release the anxiety.


And finally, trivia night…
If anyone has questions for me about trivia night email, text or message me somehow and I’d be happy to respond. We have great food and prizes and it should prove to be a fun evening. Hope to see some of you there! Here is the link to the evite:

http://evite.me/5JN9ZJYjKj

Happy Halloween my friends!
I hope you have many trick or treaters at your door, making you smile!
And for my little Seattle friends, we'll have lots of candy in case you are in our neighborhood Monday night!!
And please, may this election end in the only conceivable, logical way possible!!
Love and Peace
Janet

Good morning,
I had treatment this week and all went well. It feels good to be back on track and at least think and hope that I’m back to fighting cancer again. One has to keep that beast at bay, at least. I continue to be in awe of how quickly and easily treatment is with Keytruda compared to my chemos. I waltz in and I waltz out; easy peasy! I'll have 3 or 4 more treatments and then a scan. My next treatment is on October 26, Betty's birthday.

When I saw Dr. Kaplan we were both pretty speechless in regard to the ridiculousness of the detour we’d just been through. I reminded him that I had wondered about the coils when the pain first started in March. He acknowledged that, he remembered. I got the credit I wanted. I told him when I was done with all of this I was planning to be a doctor, so I needed that credit! But the fact is this is a very, very rare situation. It really just does not happen, hardly ever! And I wonder, if we’d figured it out what could have been done? The coil was traveling in my artery. Maybe they could have gone up and retrieved it the same way they put it in but there is a good deal of risk to try and dislodge something that is supposed to be stuck in your artery. It definitely would have helped to have known the cause of all the pain and I probably could have managed the pain better, knowing what it was. I would not have had to jump through hoops of theories with a variety of treatments/approaches. But that is all water under the bridge now. I’m relieved to know what caused the pain, delighted to be pain free (for nearly a month now!) and happy to be visualizing my tiny precious pearl forming in the wall of my duodenum.

I’m heading to Colorado on Thursday. I’m meeting my mom and brother there and we are hanging out with the Gilroys for 5 days. We get in the day before Kathy’s birthday. Then mom and Matt are joining me on my return flight to Seattle and they will be here for a week. I’m looking forward to lots of family time here and there.

That puts the Gastric Cancer Trivia Night Fundraiser right around the corner, November 20. I’ll attach the evite again, at the end of this post. I’m wondering if anyone has connections for donations of beer or wine? Please let me know if you think you can get some donated for our good cause. We are a mini fundraiser with the donations going to Fred Hutchison Cancer Research Institute. Since it is a small organic fundraiser we do not have a tax number, so we just need donations from the goodness of people’s hearts! Please let me know if you might help us procure some beverages for our event. Also, try to join us! We’ll have pasta and salad and desserts followed by trivia games. My friend Gaby, in her former career, was a caterer and she is a fabulous chef, so, we’ll be in for some tasty treats that evening! Bring your own trivia team or join up with others that night. It should be a grand time!

http://evite.me/5JN9ZJYjKj

Lots of love,
Janet

Okay, that was one weird and unexpected detour on my road to kicking cancer. I try to find that balance between anxiously waiting for symptoms to recur and being aware of symptoms if they do occur. Vigilant, but not freaking out; I guess that is what I’m going for. Thanks to my friend Shannon I have a new way of thinking about this irritating little coil. She said she was imagining a pearl forming inside of me. So, just like the grain of sand is irritating to an oyster and will form a pearl over time; my coil is an irritant and the scar tissue is forming a pearl. I like it. Easier and prettier to visualize than the wall of my duodenum!

I am on a low residue/low fiber diet. Eating nearly the opposite of what I usually eat. I usually eat lots of fresh veggies, fruits, lots of salad, nuts, seeds, beans, whole grains. NO, not right now. All of those are no-nos.
I can eat a few fruits and veggies, cooked well or canned or very ripe. I can have white bread (they still make that!), white rice, white pasta anything without any of the forbidden foods made with enriched flour. Not even fake white bread made with regular wheat flour. I can have lean meat and fish (thank goodness, salmon and chicken are ok!). I can have eggs. I can have dairy (but limited to 2 cups a day). It is the same diet I was on when I was released from the hospital 2 years ago (nearly to the day!!!).

I am gradually building my strength and stamina. Prior to my side trip to the hospital, I was up to about 40 minutes a day with Wilson, walking hills and stairs in the neighborhood. I tried to keep up my walking in the hospital. I walked figure eight laps around the two sides of the 12th floor, listening to Radio Lab. One day I took over 10, 000 steps! Pretty good for a day in the hospital! But, it was so flat! Walking in the neighborhood with my high strung pup is a little different, it takes a different kind of energy!

And now…back to our regularly scheduled programming! I was supposed to get a Keytruda treatment on the Thursday I was admitted to the hospital. I get to have that infusion on Tuesday next week. I’m so relieved that we are getting back to the main event: fighting this cancer!

November is Stomach Cancer Awareness Month and my friend Gaby and her family are organizing another trivia night. Our family is helping out a bit procuring some food and some trivia prizes (any leads for donated salad, pasta, dessert or prizes?) Last year we were in a bar on Capitol Hill and we really didn’t have the room we needed. This year we have a hall so we’ll have plenty of room to fit and be able to sit with our friends! So, save the date: November 20, 2016. I’m including the link to the evite below. I’d love to see you there!

http://evite.me/5JN9ZJYjKj

Thanks for all your emails, texts, posts, walks, visits and calls. We feel very supported! Thank you to all who have offered to help with the painting or to just finish it for us! (Thanks, Matt!) But the truth is I am very capable, I have the time and am getting the energy back and I actually like to paint! Mike and I finished the primer coat in Michael’s room today, so we are well on our way!
Thank you all!

On to Keytruda, on to kicking cancer, on to life!
With love
Janet

I'm Home!
Low residue diet.
Come on scar tissue!
Here is to healing!
Love to you all
Janet

It's Monday.
An absolutely beautiful day here in Seattle and I think I might have the best room in this hospital. I started out in a room down the hall, a double room that was originally designed to be a single, how do you say...small, tight, cramped, no privacy! And, to make it worse (maybe?) I had the bed by the door, so no window at all. However, I was closer to the bathroom, a big bonus for me under any circumstances.

I am going to completely spare you any details about my roommate except for the fact that she really wanted to get the hell out of here and have a cigarette and she didn't use the bathroom so she didn't have to drag herself past me to get there. I don't want to talk about what she did have to do, ok? Thanks!There are many more facts that my visitors know about her...but like I said, I'll spare you.

She and I spent 2 nights as roommates. We chatted very briefly just a couple of times. She had a lovely son and a few other visitors so I didn't have to share my family! I politely mentioned to nurses and the good doctor that I would just really love a private room (as would every other patient in a double room) but could see for myself on my walk abouts that the hospital was very, very busy. No room in the inn. Suck it up, time. Luckily I spent most of the time I was in there with headphones in my ears during the day and earplugs at night. I also found the family room down the hall was usually empty with a beautiful sunshiny view of downtown and the harbor. I spent a good deal of time in there.

On Saturday morning I went on a good long walk, looping round and round in a figure eight around the west wing and the east wing of this floor. I noticed, especially in the other wing a number of empty rooms. When I saw my nurse in the hall I went up to her and politely mentioned how I could smell stale cigarettes in the room and saw some empty rooms and if it is possible, pretty please, could I....next thing I know we are moving down the hall to the corner room! Wow! It is stil a single room because it has some funky angled walls the would not allow 2 beds in here. It has a sweeping view from east of Mt. Rainier all the way south and west to the middle of downtown! Absolutely gorgeous! I can see Beacon Hill and the old Rainier Brewery, a peek-a-boo of Seahawks stadium, the harbor, the West Seattle bridge and Mt. Rainier in all it's glory! It is such a blessing to have this room, big enough for all of us to gather yesterday for the game and this glorious view that I swear makes me feel a little better every time I look out the window!

Bright and early, well actually dark and early, as he is known to do, Dr. Kaplan came knocking on my door. This is his protocol; his patients know he is going to arrive early and you need to be ready. I sat up, threw on my glasses, grabbed my notebook, started taking notes and asking the questions that we had collected over the weekend, just for him.

The good news, in spite of the blood that I passed last night, is that my blood count was stable. There are 2 more bags of blood for me in back up downstairs, just in case, but I don't need them at this point in time! Dr. Kaplan was ready to let me go home based on that, until he heard about the blood passed last night. It was enough that he declared one more night, at least, for sure. It is actually helpful to know that right up front in the morning, you just set your mind for that and make it be OK. Clear liquids only, too. Ok, I would rather have only clear liquids and heal my duodenum than have food and cause more damage...right...a no brainier! Off he went to work all day to see more cancer patients than any other doctor in their group because that is what he does. But, he'll be back tonight, before he heads home to the Isle of Mercer, as he likes to call it!

Later in the morning 2 women from GI came to visit. One was the first woman I met from that department my first day here, Dr. Anderson, the other was a nurse practitioner. What I know is that there are a number of doctors electronically talking about this situation. What they were able to tell me is that the radiologist who placed the coils has now chimed in on the conversation. Dr. Anderson assured me that the radiologist is giving this thorough and thoughtful attention and has included some more specifics into the electronic conversation. He named the arteries where the coils were placed. And, when they say coil, it may mean 1-3 coils as needed to "fill up" the space and block the blood flow. It can also mean coils and some kind of gel which was used in one of the arteries. He is also floating the idea that if the coil (or coils) work their way into the duodenum and out through my system they would be moving so gradually as to allow time for scar tissue to seal up the "hole" as they go and therefore not leave a big gaping hole in my gut. That's good to know, we were wondering about that! And, the good news is that they moved me to a full liquid diet. Now I can have ice cream and yogurt and soup and smoothies without lumps, pudding and custard, etc. I started with yogurt as I wanted to save my ice cream for some good stuff that Mike is picking up, right now on his way here. Betty is headed home from work to make butternut squash soup, I can't wait for that! So that is progress my friends!

For the record, I write this blog, I babble on in my wordy way because it is very cathartic. I have this need to record this information for myself. Today I spent some time reading back over my posts from the time I was going through the Y90 treatment. It was helpful to refresh my memory and recall some of the details from the procedures.
So this process is very cathartic and is a place for me to store some facts and some thoughts. I know, sometimes it is a lot of words. Like I said to Betty today, I'm not sure I would have time to read my blog!! So thank you for that!

Tonight Dr. Kaplan came back around. It is abundantly clear that NOONE wants to go in there after this tiny piece of titanium. We are absolutely, at this point in time, going to let it be. Because of that blood I passed last night they want to look at my ilium tomorrow. That is part of the lower intestine that you cannot see with either a colonoscopy or an endoscopy. It also happens to be the part of my body that was so damaged by the xeloda and put me in the hospital for nearly a month 2 years ago! So after midnight tonight I can have nothing by mouth and tomorrow they will use some kind of dye and I'll have an x-Ray of my lower intestines. If they see no problems, I get to go home. If they see something, well we'll cross that bridge if we have to.

Time for bed! Good night, I'm off to dream sweet dreams of scar tissue!
Love to you all,
Janet

PS Did you notice, I figured out how to post pictures using my iPad, no easy task...this thing is over 4 years old...that's old for an iPad! What I couldn't do is copy, cut and paste to move some stuff around...oh well, maybe next time!

I need a word that means baffled and pissed...
Because I am baffled and pissed!
The good news is that this is not about more cancer.
But, it is one for the books...

Part One
I Can't Believe it Really IS GERD!
For the last few weeks I have been focusing on my diet and trying to figure out if I really have GERD. I'm not sure when the pain returned on a daily routine, but it had. Ever since I started Gabepentin the pain was always less, more tolerable, but it was there, everyday, in the afternoon or the middle of the night, or both. Recently I noticed some food patterns so decided to restrict myself to a very bland diet. I have to admit, as sick as this sounds, I was a little pissed off that it worked! I just couldn't believe after all I went through that it was GERD! But six pain free days in a row, I could not dispute the evidence!! I knew if I went enough days on a bland diet my esophagus would heal and I could gradually add in some chilies and spices. Hopeful, optimistic...right?

Part Two
The Red Herring
I've been wanting to paint the kids rooms for years but painting a room takes time and energy-at the same time (unless someone does it for you...that was awesome, thanks Matt). I have not had time and energy at the same time for years. I was super psyched when time and energy arrived together and I was ready to paint! I was making it easy on myself with a light butter cream yellow I'd used in the past. Their rooms have literally no trim and I decided to paint the walls and ceiling the same color since it is such a calm neutral color. Mike helped with the prep work and I actually enjoy the painting part. I downloaded an audiobook to listen to and it makes the work so enjoyable, satisfying.

I started with a small bite, the inside of Michael's closet. I probably could have gotten away with one coat, but then I thought, I'm never going to paint this closest again, so I went ahead and painted 2 coats. I was so pleased with the end results!

At the same time we are having the outside of our house painted (there is not enough time or energy or a story compelling enough to ever make me want to do that!!!). So I decided once the closet was done I should wait to start the walls not knowing when or for how long the windows would be covered. Also Mike and I had plans to head out of town this weekend. In the interest of sprucing up Michaels room I decided to tackle the sticky gooey patches on his closet door that have been there since we moved in 19 years ago! I had my Goo Gone, a rag for scrubbing, a bucket of warm soapy water and a wet rag, turned my audiobook on and started scrubbing. The day was cool and I had not thought to open the window but after about 10 minutes I realized I should, and I did. I worked for about 30 minutes or so, enjoying the story and the fruits of my labor.

All of a sudden I was overwhelmed by the fumes and became lightheaded and nauseous.  I realized it was bad enough I should stop. I turned on the fan, threw the rag outside, changed my clothes and went to lie down to let this pass. After 20 minutes or so I felt worse, I felt ill and sat up to make my way into the bathroom. Just outside our bedroom door I had to lie down on the floor so I wouldn't pass out. This is not good, but I am stubborn as hell when it comes to this kind of shit (for better and worse)! I was in a cold sweat and gradually made my way down to the bathroom. I called Mike, he was nearly home. I warned him about how he would find me. Mike raced in and of course I downplayed it, though I couldn't get up. I sat up for a minute but had to lie back down. Mike called 911. The kind and caring firefighters showed up in a timely way and by then I was starting to feel better. I pinked up while they were there and was able to sit in a chair. With a promise we would call them back if it happened again they left us at home.

I felt funky all evening, not ever as ill, but funky for sure. The next day I was scheduled for my third round of immunotherapy and I was planning to drive myself as I had three weeks ago. The thought of that, at this point was stressing me out so I asked Mike if he could change his schedule and take me. Of course he did.

I didn't sleep much and got up numerous times in the night, each time making sure I was ok before I stood up and as I made my way down the hall. By morning I was sure this episode had passed, though I was not convinced enough to want to drive myself to my appointment.

Part Three
Shit
TMI warning...I have to talk about poop again!! Yep, you guessed it: the black poop of death (see my first ever blog entry for more info on BPOD). BPOD revisited and this time it had bits of red blood as well. Not good. I felt weak, but not dizzy. I called Dr. Kaplan and we agreed that if I started to feel dizzy I should go right to the ER, otherwise I should go get my blood draw, and see him at 9:30 as was the plan. I took a nice long shower and ate a big fat piece of toast loaded with peanut butter and Lizzy's home made plum jam (when you have the black poop of death you never know when you might get a shower or food again!!). We headed out. I was able to get through a blood draw and during my appointment with Dr. Kaplan we agreed I should get admitted so I could get an endoscopy that day or the next. As an outpatient I likely would have had to wait more than a week. So, we waited in his office until my reservation was ready. We walked through the skybridge, up to the 12th floor, and here I am.

Part Four
Coping
My goal has been to not freak out. Recently, I have been using the Headspace app to practice meditation. They suggest as a strategy to help when your mind wanders to think of your thoughts as cars on the highway. You try to watch your thoughts go by. Don't follow your thoughts down the road, just let them go. When you realize you've jumped in a car, you hop right back out, focus on your breathing and when thoughts return, again, try to watch them pass. This practice has really helped me during this ordeal. Obviously, I could think of a thousand horrible things that are happening inside me to cause this, and what we might do and what possible outcomes might be; that would be easy and so freaking awful! So, I'm working diligently to treat those scenarios as big fat ugly trucks. I'm not jumping in that rattletrap!!!! Who wants to follow that scenario down the road? Not me! For the most part, most of the time, this is working for me. One step at a time. Don't freak out we don't know enough.

Part Five
The Hospital
The first doc I saw was from the GI department. A woman who was easy to talk to, listened to me and seemed highly capable. We agreed on a first step. Because I had black and red blood I had to get the double whammy: an endoscopy and a colonoscopy. Lucky me! No more food for me (that toast was so yummy!) clear liquids only until midnight. Then nothing. At 5:00 my nurse delivered a 4 liter jug-o-fun! YUK! It was truly vile. 4 liters of yuk to down between five o'clock and midnight. There is no way to make this next part pretty, so I'll make it short; I pooped dark maroon blood throughout the evening, night and into the next day.

My procedures were scheduled for 2:00 Friday. While I waited I was given 2 bags of blood to compensate for blood loss (thanks to all you blood donors out there!) and mostly stayed in bed listening to my audiobook. Nothing by mouth until after the procedure. I'm grateful that the doctors in that department were running on time and that they listened and HEARD me when I reported that I'd felt so much pain during endoscopes in the past. I did not have the sedatives usually used for such procedures, instead they gave me full anesthesia, propofol, which was a beautiful experience for me. I almost remember falling under the spell for about 7 seconds, but the best part was recovering so very quickly and easily. You might recall (we sure do!) that it took me hours to come out of the anesthesia that was used during my microwave ablation last summer. Propofol was fabulous; quick under and quick recovery.

Dr. Chang introduced himself prior to the procedures and then gave us the results. No cancer, that is the good news but in my duodenum there is an ulcer. The ulcer is what caused the blood but fortunately at that point in time it had stopped bleeding. Unfortunately, in the middle of that ulcer he saw two metal rings, right there, sticking through my duodenum!! Hmmm...you know where they came from right? That's right...one (or two they're not sure) of the titanium coils that was inserted into the vein going into my liver during the Y-90 mapping procedure in February has migrated to my duodenum. That's right. At least one of the two coils blocking blood flow into my liver has now penetrated my duodenum and is blocking the blood flow at that point. FYI, the way I was taught to say duodenum is not how medical professionals say it these days. They have the emphasis on a different syllable. It is a tricky word!

Since then, Friday afternoon, we have been on a roller coaster. We've talked to Dr. Chang a couple of times. We saw Dr. Kaplan Friday evening. Dr. Mawad was Dr. Kaplan's weekend representative, I've talked to her 2 or 3 times and I've talked with 3 different surgeons. After each of these conversations there is a better level of understanding and of course more questions. Always more questions.

Part Six
What We Think We Know
I didn't think it was GERD...but really, it didn't have to be this weird!
At least one of the coils is embedded in my duodenum which is really really close to where it was placed. It has most likely been there for some time. (Like since March when the pain started and I asked, "could one of the coils have come loose?") This is very, very unusual, but it has happened before. The best solution is for the ulcer to heal and for scar tissue to form around the coil and just stay there forever. A second, less pleasant solution is for it to continue working its way into my duodenum and then get carried along through my intestines and out. Of course this is likely to continue to cause pain and bleeding all of which will have to be monitored and dealt with closely and carefully. The last resort would be to go in surgically and remove it. It is in a very tricky spot and seeing as it is embedded, well, they would have to get it "unstuck" and there could likely be a good deal of bleeding. In addition, they, we, need to come up with a plan so that if the ulcer doesn't heal and I continue to bleed, well, something has to happen.

I have started two new medications to try and help heal the ulcer. I am on a clear liquid diet so that my duodenum doesn't have to work which aggravates the ulcer. I had the procedures Friday and continued to pass blood off and on all day yesterday. But last night and through today I had no more bleeding. Unfortunately, a couple of hours ago I passed more blood. So, let the healing begin again!!

So, my friends, I ask you to visualize scar tissue for me. Wrap that titanium in scar tissue and let it be! That is the goal for now.

As far as treatment, immunotherapy, well we haven't even talked about that, yet. I have no idea when I'll get to resume treatment.

Part Seven
This Place
Once again, I have to sing the praises of the staff at Swedish Hospital. I am profoundly amazed by the quality of care from the individuals I meet. I know I've babbled on but I just have to tell you about Jaja and Yaya. Yes, today, Jaja came in to cover my port with plastic bandages so I could shower. At the same time Yaya came in with my clean linens and clothes. Jaja is from Brazil and she was the charge nurse today. Yaya is from Gambia and he was one of the nursing assistants. They said they love going into rooms together and introducing  themselves! You really can't make that up!

My nurse today was Miriam. She is from Nigeria and learned English there. She moved to New Jersey when she was 19 and worked with a woman from Jamaica. She totally sounds like she is from Jamaica. She went to school in Kansas, met up with a man she grew up with in Nigeria, now they are married and have 3 kids. Crazy! She was lovely; warm and caring with a bright and easy laugh. I love meeting all these people! What an amazing hospital we have here!

There are so many twists and turns in this story that I had to leave out. So many details and bits of information about these coils, their size and shape and how they moved, and all the theories we've come up with. We are baffled and pissed!

I don't know what tomorrow brings but I had a great day today. Mike, Betty, Jennifer, Michael, Maggie and Eva were all here for the Seahawks Game. We laughed and they ate and I drank lots of clear liquids and we had a great day!

Yesterday morning I met with 2 of the surgeons who were explaining how rare and tricky this is and I said, "I will get through this and you will look back and say, she was right!" I'll leave you with that and I'll be back in a day or two.
Lots of Love,
Janet
 PS I am posting from my very old iPad and it is slow and tricky. I am also posting late on Sunday without my editor around to assist. So, please overlook spelling, grammar, etc...just want to get this story out into the world! oxoxoxo

Technical Difficulties
Today Maggie came by and I enlisted her help with the issues I've had with this blog. There are so many of  you who have let me know that they have not been able to respond to this blog on the blog. Then I cleared a bunch of cookies and I couldn't reply to my own blog!! Ridiculous!

So, today Maggie and I tried a few things and we ended up switching the account over to my google+ account. So, if you have a google account maybe you will be able to respond. On the computer I STILL cannot make it work... ridiculous! However when Maggie suggested I try on my phone, that worked. So, I was able to leave a reply to a reply.

All these technical difficulties reminded me to breathe deep and relax and then I remembered a link my sister recently sent me; one she uses for her meditation...

Enjoy! And by the way, NOT SUITABLE FOR CHILDREN!!

http://canyouactually.com/meditation/

Happy Saturday!
With love and laughter,
Janet

Hello my friends,

It has been awhile since I’ve posted, so I’ll do my best to catch you up.

As far as I can tell I am having minimal to no side effects from the Keytruda. I would say the first infusion left me feeling quite fatigued, but I had good energy Labor Day weekend after my second infusion on the 31st. After the Labor Day festivities (more about that later) I was completely wiped out, but I really can’t blame Keytruda for that!! I can only hope, pray and visualize that the immunotherapy is doing what it is designed to do on the inside. But, really I feel pretty good.

The pain continues to be buffered when it does raise it’s ugly head and to actually pop up less often. I’m now going with a theory that the pain that comes through to my chest is GERD or acid reflux. Why or how it starts (every time) in my back and moves into my chest no one has been able to explain, but we are now treating me and the pain as if I have acid reflux. When Dr. Kaplan said to take Zantac to try out this theory, Mike said, “Oh good! Now we can go to a buffet and you can eat whatever you want!” Yikes, I don’t think so. I have to admit if I have a pulled muscle or two (as my pain doctor was thinking) or acid reflux (as my oncologist now thinks) and I had an MRI, a bone scan and an endoscopy, then got addicted to and went through withdrawals from opioids to search out and treat the 2 most common afflictions in our society…well…that just feels ridiculous! My PT says they were taught not to look for the zebra…but I guess if you have stage 4 cancer they have to rule out the zebra…whatever! I have responded to the Gabepentin for nerve pain (all pain travels on nerves???) and I am responding to the Zantac along with some supplements that Dr. Standish recommended to go along with the GERD theory. My pain is, like I said, less often and less intense. I am also, for the most part, most days, trying to eat and drink like someone trying to avoid GERD symptoms. So, hopefully, in time it will go away completely. I’m a little embarrassed to think that all along it’s been a back ache and acid reflux…but there you have it! I still don’t understand the connection in spite of my vast amount of googling! Oh well, the body is a complex machine, to say the least!

Today is the first day of school for Seattle and I have to say I have no doubt that my decision was the right one. Dr. Standish gave me some advice that I am trying to heed. She says I’m likely to be looking for something to fill that void and that I should take time to heal, heal, heal and then open myself to the possibilities and see what happens. But, first, I need to heal. So, that is what I am doing. This month I have a PT and a massage therapy session each week. In addition I have a reflexology appointment this week. Starting yesterday I increased the time and distance in my morning walk with Wilson. Tricia is kicking it up for me in PT and I start back to pilates next week. So, I am deep into self help and healing and feeling pretty good about it. 

I did have a teacher nightmare, however, my subconscious clearly hasn't gotten the memo about me not returning to work: 

I was on a field trip and I couldn’t remember my password to open my phone to find a map for the bus driver. I could not remember how many kids I had in my class or any of their names! I was going to a park with the kids where there had been coyote sightings and I had to make sure I left with the same number of kids I came with and every time I tried to count them I got a different number! A classic August nightmare! I am thinking of you all my teacher friends and hoping that you are having a great day with your students! And especially to Lisa, Missa, Beth and James: I hope you love my little cuties! And, do let me know how they are doing!

I’m thinking of you all today!

Many of you regular readers know I have a sweet nephew, Jamie, who posts regularly on my blog. I’ve bugged him for years to bring his family to visit from Boulder. Finally, they flew up here to spend Labor Day weekend with us. On Thursday morning, the day after Keytruda, I picked them up from the airport: Jamie and Abbe along with Gaby (10), Annable (8), and Joshua who had just turned 4 last weekend. He greeted everyone he met by holding up 4 fingers and saying, “I’m four!” We had a fabulous time. On Thursday we went down to Alki and to Whales Tail park. On Friday I sent them downtown by water taxi. They had lunch at the Space  Needle and then went to the Aquarium. On Saturday we went to low tide at Constellation Park and saw an octopus!! Then we went to the Locks (two of my favorite Seattle activities). And on Sunday they went to the zoo. Of course that was followed by our biggest pizza party ever to celebrate Maggie’s 25th birthday. We really had a wonderful time and I tried to pace myself as best as possible! On Monday I crashed! Mike took them to the airport and we both just hung out the rest of the day. We did make an afternoon walk at Alki, but other than that we were both pretty spent. So, thank you Jamie! Thank you for coming and sharing your dear family! I love them all!!

So, that brings us up to date. Two more weeks until number 3 infusion of Jimmy Carter’s famous immunotherapy drug. I’m not sure if the good doctor will want to scan after infusion 3 or infusion 4. I’ll let you know.

In the meantime, happy back to school, everyone!

Lots of love,

Janet

Gaby, Joshua, Annable with June

It was alive, moving...about the size of a dinner plate!

A quick stop in Fremont for these three.

June IS a part of our family!

Last weekend we were honored to be invited to a Bar Mitzvah of one of my former students, Ben. In addition, I was asked to do a reading (in English, of course!). What a great celebration and honor. Ben did a fabulous job, what a great morning!

Then we had a pizza party to celebrate Betty's nephew who recently defended his dissertation to earn a dual Ph.D. in Astro-biology and Astronomy from UW. We attended his defense a week or so ago and you can imagine, it was a little like listening to Ben speak Hebrew in terms of being able to comprehend what he was saying! But, what a great experience to witness his defense. I had never been to the defense of a dissertation before. Another great honor and privilege.

It is back to school time and I am continuing to work on my grieving process, letting go the part of me that held down room 122 at Pathfinder. It is Jumpstart for kindergarten this week. There is not a fiber in my being that thinks I could have even tried to pull off teaching this year. Every cell knows that I could not have done it. But, it remains a challenge to be here; not there.

I am also working hard to remember that I had this pain before, during the spring, and then it suddenly, unexpectedly disappeared. It is back and is a daily challenge. But it went away before...it has to go away again!


I'm having trouble replying to replies...my blog just won't let me reply. I went in and got rid of some cookies last week and I must have dumped a cookie that lets me in to reply...can't figure it out!

Eliza my dear:
So glad you find Insight Timer helpful. Wilson often joins me in my meditations. Thanks for your words of encouragement and support. It does feel a little wimpy...whine whine whine...I'm done whining about pain!! (maybe!!) Mike and I were just talking about you and your BF the other day. We had such a great time in Boston. Best of luck with the garden. I've decided my little lettuce sprouts are just not going to make it this year...maybe next year. I still have hope for my kale!! Love to all the critters in your home. xooxxoxo

And Cecelia I wanted to thank you as well and say I am wishing you all the best this fall with the transition to the Earth Hall. It is such an exciting time for the kids and just keep in mind that it can be a more difficult transition for the parents to move from Sky Hall to Earth Hall! Fair warning! I'll be thinking of all my little salmon (and their parents) as they find their way up stairs!

And by the way, Seattle, is anyone else hot? Or is it just me!! Not complaining mind you! Soaking it up into my bones for winter!

Peace and love
Janet

Mike and I went to meet the latest addition to our healing team; Dr. Yang, at the Swedish Pain Clinic. I liked him right off the bat, when I said that I thought my story was complicated and I’d just been talking to Mike about how to communicate without too many details. He said that most of the cases that make it to him are complicated ones, and he sat down ready to listen. He was a good listener. We spent about 45 minutes with him. He was thoughtful, asked lots of questions and seemed smart and caring (two attributes you really want in all of your doctors!).

The bottom line is he thinks it is muscular. He said with all my treatments and downtime, in spite of my best efforts at exercise, including pilates, that he thinks my core has been weakened and I tweaked some core muscles in perhaps more than one spot. Well, it kind of makes sense and it is also very confusing to me. What makes sense is that after my Y90 radiation I was pretty flat out of it for a bit and that is when the pain started. He said it would take an Olympic athlete just one month of no exercise to become like everyone else. So, a week on my back would make me pretty weak I suppose.  

What makes less sense to me is the intensity of the pain but I suppose that pain comes from muscle spasms after the initial back pain. I spent last night, and so far today, trying to be being mindful about keeping my back more relaxed. My mindfulness practice is certainly helping me. I'm doing lots of conscience breathing and dropping my shoulders down and back!

Going with the muscular theory he is recommending PT and massage, which I already do (now we'll have new marching orders). He has recommended a few more things that I may or may not include over time. He wants me to take it slow, pace myself (I’m only good at pacing myself when it comes to exercise, so that works!).  I need to build my core and loosen up my back, shoulder and neck muscles (I am pretty tight). He has also given me a muscle relaxer to take for pain. I feel a little wimpy thinking all this pain is from a tweak in my weak core, but at the same time, my body has been through a lot. I would tweak a muscle or two, too, if I was this body!

So, enough about pain. 

I am feeling no side effects from Keytruda. I am visualizing my immune system in there kicking cancer and taking care of business. I’ll have my next treatment in 2 weeks. In the meantime, I'll be relaxing my back and building my core.

Lots of love to you and continued thanks for your love and support.

Janet

Tara Brach is my new pain management teacher. Initially I found her on my Insight Timer Meditation App and have listened to and followed a number of her guided meditations there. Then I found out she had a podcast. I searched and found that her podcasts date back to 2010. I’ve been listening to them in order (I’ve listened to 4 so far) and I am learning so much. It’s a lot of mindfulness, aliveness, some Buddhist teachings and lots of anecdotes. She is easy to listen to; a good story teller. Her voice is very soothing and pleasant. They are about 45 minutes long and I have found after each one that I immediately want to listen to it again. But I haven’t done that yet…I just listen to the next one instead. 

I listened to a 2 part podcast titled Presence and Aliveness, here is the blurb: ”These two talks explore how we leave our bodies, the challenge of working with pain, the pathway home to embodied awareness, and the gifts of presence and aliveness.”

Today I was starting to feel my pain come on. Last night I had taken the Gabapentin and I really wanted it to help me with my pain today. I did not want ANY pain today. Mike and I planned a “stay-cation” day in Seattle and I wanted to go out and play and NOT stay home and be sick. As soon as we left I felt the pain coming on. It was just slightly different. Usually, I might say, the pain comes in like a heavy fog, its light at first but you can see it and feel it roll in until you are in the middle of pea soup. Today it felt more like a light mist, how we say here in Seattle, low clouds. It was not as heavy, it was not as threatening. But it was there. I was determined not to use Dilaudid, though Mike said he would guide me by the elbow and take care of me through our urban adventure. I wanted to let the new drug do what it could do and see what it could do. So, I focused on some of the things I learned from Tara. I really worked at feeling, knowing, acknowledging, the pain. And opening up around it and holding it safely and relaxing and letting it go. And it worked! I’m sure the Gabapentin had a lot to do with it, but I’m gonna take some credit (that I’ll happily share with Tara!). I held the pain at bay and then it was gone. Completely gone. 

We had a great day. I don’t know how I had the nerve to plan a day like this the day after immunotherapy. Maybe I was testing myself. We took the water taxi downtown, walked to the sculpture garden. Then we decided to try to catch the bus back but had to walk up to First to catch the bus. We ended up walking all the way back to the water taxi. I put in 16,980 steps according to my app! As you can see it was a beautiful summer day.

Mike at the Seattle Art Museum's
Sculpture Garden

From Alki

Well deserved ice cream on First Ave.

Back to the Gabapentin…wow! I slept like a dead dog last night. I guess I snored like a bear, too, according to Mike. That was awesome! I did wake up a little groggy but it wore off quick enough. Now, if it can take care of the pain…time will tell!

Michael turns 27 this week. How in the heck did that happen. My children are such a great blessing. I am so thankful for them and to them everyday.

So far, Keytruda and I are getting on just fine. I am picturing my immune system just having a heyday in there!

Thank you all for your loving support, notes, flowers, prayers and positive energies. 

We love you!

Janet

Today I had my first immunotherapy treatment. 

First I have to thank my friend Gaby who was in the immunotherapy trials for Keytruda. For her, the Keytruda was a mixed bag; it did some good and did some harm. All in all it was one of the treatments she preferred. I am sure that she had a part in why this particular treatment was made available to me, with gastric cancer, because it is not yet common protocol. Thank you, Gaby! You are quite amazing, courageous and an inspiration to me! 

The whole process for immunotherapy starts out just like chemotherapy. I started with a blood draw, then checked in with the Good Doctor and then down to the infusion center. It went much, much quicker than chemotherapy, as it was just a tiny bag of fluid. It did not make my pee turn red, or make it so that I could not touch or drink anything cold and they did not have to give me a shot in my stomach to stimulate my white blood cells, the bag did not have a skull and crossbones and a giant POISON sign all over it (that was refreshing!). That is just that start of the list! Mike had to work today so Betty escorted me and we went for lunch at Chaco Canyon on our way home, like a normal day! Thanks, Betty!

When I got home I was already feeling tired. I started to watch a movie and just bailed and went straight into bed. Full nap. Now I feel a little tired, nauseas, out of sorts, not bad seeing as how I am fighting cancer as we speak!

Last night I was a little shocked to get a lovely Gerbera Daisy plant from Jimmy Carter! Word does travel! The note said:

“Hope your body reacts to treatment just like my body! Love, Jimmy”

Thanks, Jimmy! I love you, too!

My pain is coming and going. Some days there is no pain. Some days it sets in early and sticks around. The tramadol stopped working and I’ve been using lots and lots of meditation to help me relax and try to release the pain. Even tylenol helps a little. Jenni Haynes hooked me up with a cream made from the milk weed plant that  sometimes helps when the pain is mild. I have an appointment next week with the pain clinic at Swedish to see what they can do. Dr. Kaplan thinks I might need a nerve block. That sounds really scary and awful to me, but I’ll have to look into it more. Has anyone out there had one of those? In the meantime today he gave me a prescription for Gabapentin (Neurontin), I’m supposed to take my first one tonight as it makes you tired. Since I’m already tired I guess it will make me sleep…I’m ok with that! He also gave me a prescription for the evil seductive black hole that is Dilaudid. Well, true confessions…

In the middle of this post I felt the pain coming on. It started lightly in my back so I jumped up and grabbed my headphones, turned on my meditation app before the pain had time to spread. But within 10 minutes it had deepened and thickened and grown through my sternum, full blown. And I just could not do it. I could not get into a comfortable position, I could not breathe, I could not relax. I could not bear one more slow deep breath~I could only hear the Dilaudid calling out to me. And before I knew it, down the hatch. I knew it would help. I knew it would work. The first slip of the slippery slope. 

I WILL NOT GET ADDICTED TO OPIATES AGAIN. 

I WILL NOT GET ADDICTED TO OPIATES AGAIN. 

I WILL NOT GET ADDICTED TO OPIATES AGAIN.

But I do need a break. I know the stress of the pain is not good for my body, either. I need a break from the pain and from holding off the pain so I took it.

Tomorrow is another day. Today, I’ve done enough. good bye cancer, good bye pain (for at least 3 hours!).

Here is a little visual. T-cells are our good cells that will fight the cancer if they know it is there. Keytruda interferes with the cancer's ability to bind to the T-cells and deactivate them. So right now, my T-cells are capable of seeing the cancer and attacking the tumors. My immune system is in full attack mode! Pretty cool. 

Good night everyone. I'm calling it a day!

With love and gratitude to you all.

Janet

2 weeks later…finally!

Just got a call this evening from the Doc’s office, Merck came through and they are donating the Keytruda. This is especially good news considering that my insurance will be changing in October (as I move on to Mike’s insurance) and then again perhaps in November depending on how his open enrollment options look. I’m so relieved we don’t have to jump through insurance hoops every month. I'm so relieved I get to try immunotherapy. I'm so relieved I do not have to have chemotherapy again (not yet anyway!). My first treatment is Wednesday morning…Immunotherapy here I come! I can’t wait for my immune system to see those cancer cells for what they are. My immune system is going to freak out. My immune system is going to say, “What the hell is this? Where have these been hiding?” And then my immune system is going to kick some cancer ass!

My pain comes and goes. Sunday was by far the worst day of pain so far. Since then it has tapered off and I’m even sleeping 8-10 hours a night. It’s just been so very inconsistent and the source remains a mystery.

I have been practicing patience. Waiting for the call from the doctor to come in and waiting to start treatment. Waiting for the pain to come or go. Wondering what each day will bring. It’s been difficult to impossible to plan anything. Everyday I just have to see how I feel and what the day brings. Now the pain is less intense and less frequent and more manageable with the Tramadol. Now I know when treatment will begin. Now I can breathe freely.

This afternoon we opened our front door to see a beautiful pink dahlia plant in a clay pot. Gorgeous. There was a card and here is what it said:

“When Hope is heavy and hard to hold onto, 

let others hold you up~you are loved by many. 

Something bright and beautiful for your deck.”

No signature. No clue. Thank you mystery dahlia person. What a beautiful plant and what wonderful timing; I bet it was just an hour later that we got the call from the doctor. 

Thank you all for helping me hold onto hope. The universe is speaking. And, I have one more thing in common with the good man Jimmy Carter!

Holding you all in my heart tonight.

Thank you

With love

Janet

Mystery Pain Returns

What a week! No word on treatment and I’m trying to do this and that, taking care of business, having some fun, trying to get it all in before I start back on treatment, not knowing what that treatment will bring me. It reminded me just a tiny bit of nesting, but without the joy, the cute little baby clothes and books and toys. But I’m getting everything ready so I’ll be ready for the unknown. Something is going to happen, it is going to be intense and I want to be ready.

Unfortunately, as the week progressed so did my pain. Most days I have been pain free (and I am ever so grateful for that!). But like clock work, about 2 hours after I fall asleep I wake with terrible pain, I have to get up and wander the house, try different positions, surfaces, meditation apps, until I wear myself out and can get control of myself, my breathing and then I fall asleep. I wake at 3 or 4 or even 5 am, without the pain, and get to go back into bed. By today, it had just taken its toll on me. I lost it this morning. Lost in worry and despair and pain. Mike held me and comforted me until I could get a grip. We went on a marijuana pain without high shopping mission, but honestly, I think if I want marijuana for pain management, I’m gonna have to get high. And I don’t want that. And I don’t feel like I have the luxury of time to figure out the right cbd/thc ratio for me. I need this pain to be gone today. I need a break.

This afternoon, I had about an hour of pain as bad as it’s been. I finally broke down and opened up the ole doctor bag o’tricks and took a tramadol. It’s a slippery slope. But I cannot cope with this level of pain, and I don’t want to be high, so, I’ll take a few pain pills to get through until I can see someone this week.

I’m feeling better already and I’m going to go out and join the pizza party. June has a friend over, another neighborhood little cutie pie, so they will be the real medicine that will make me feel better!

Again, thank you all for your texts and emails.

Jamie, Mike gave me your message and I will call you soon.

Love to you all

Janet

This morning, walking Wilson, thinking about hope and realizing how heavy it felt; how much energy it takes to keep hope up off the ground. But, I have to hold hope. Putting it down comes at a cost much bigger than not holding onto hope. I’m not sure of the entire cost, because every time I set it down for a minute it hurts. A physical emotional spiritual pain. So I am holding hope. Hope for the right treatment. Hope that I can start treatment soon. Hope that the treatment doesn’t cut me down too far. Hope that the treatment works. That is just the beginning of my hope list; no wonder it is so heavy.

I am hoping for the JC immunotherapy drug, but only if that is the right drug for me. When I was a little girl and I would pray to Mary and the Saints to intercede for me I always had to put a caveat in my prayers. I would pray hard and long for this or that, but only if it did not do damage to others; only if it was the way things were supposed to turn out. I would not want my outcome at too great of an expense to others or if it was not supposed to BE that way.

So here, I hope and pray, ironically for a drug I’ve labeled the JC drug, but only if it is the right drug for me. 

My pain from the spring is coming back. It comes and goes, lightly or with a heavy hand; sometimes in the morning or during the day, mostly at night. My anxiety around the pain, after all I experienced in the spring, may be as bad as the pain itself. I think my body wants the cancer to go away. 

I know the fine folks at Dr. Kaplans are working on getting approval for Keytruda (JC’s meds) through my insurance and directly from the drug company. I guess it is just a matter of time until I hear from them. Is the waiting the hardest part? I don’t know

Thank you all for your kind comments and texts and emails and visits. I know I don’t have to hold up all this hope by myself. I know you are here with me.

With love and hope

Janet

Time to dust off the boxing gloves…here we go again.

As much as I would love to be writing and telling you all about our lovely trip back east, all the great friends we saw, food we ate, monuments we visited and steps we walked I had a scan today and in my news cycle, it takes precedent. I hope to give you a glimpse into our vacation maybe sometime next week. 

But in the mean time…I had a scan today and it was not the news we hoped and prayed for. It was not what we visualized and meditated on. It was not great news.

On the good side…the radiation did a good job to the tumors that were targeted. They are gone or smaller. However, there are 3 or 4 new tumors on the left lobe of the liver. And through the blood, the cancer spread to my lungs. There are at least 6 small (he said small many times) spots on my lungs. When he said lungs I kinda freaked out but he said not to make a big deal about the lungs. He said it didn’t matter if it was the lungs or the big toe, it’s the same gastric cancer and it is spreading through the blood like cancer does.

OK, what do we do? I gave up my job so I would not have to say, what do we do so I can go back to work in a month (that would not be possible…I’m so glad I  made that decision and have that part of my grief behind me and not colliding with this part of my grief).

Right now it looks like there are 2 possible treatment plans. One that is newer, in the immunotherapy set of drugs and the other is more typical chemo.

The one we are hoping to be able to have access to is what I’ll call the Jimmy Carter drug. As you know, cancer disguises itself as a typical cell so your immune system does not know to attack it. This newer kind of drug “unmasks” the cancer cells for what they are and it allows your own immune system to go to work. It has shown to be very effective on some cancers. The side effects are much more minimal, much less intense, much more tolerable than typical chemotherapy. The problem: it has not been approved for gastric cancer. It is approved for some cancers. It is showing signs of working on gastric cancer, but it is not yet easily available for my cancer. But, it is possible the insurance company will say yes, it might be possible to hook me up with a study and he said sometimes the drug companies will give out the drug for free (I imagine, when they work with a doc like him with so many patients, and so much experience, and they really want to get their drug out there…it makes sense. I’ll take free samples!). And I really, really like Jimmy Carter, so, there, I want what he had!

If none of those paths open for us, I’ll be on the more traditional chemo regiment again, with 2 drugs: taxol and one more I cannot remember. There will be nausea, fatigue, possible hair loss…the usual.

So, we wait and see what kind of strings he can pull, what kind of rabbit he can pull out of his hat and then we do it. We just do it and fight it again. Cuz that is what you do. That is what I do.That is what we do.

We’re off to Yakima this weekend to sip wine, walk through vineyards and wineries with some of our oldest and dearest teacher friends. It will be a great group to be with.  We've all had variations of grief; none of us have been spared. They will all have their own kind of salve to help me with my current wounds. I’m looking forward to time with these guys.

Next week, I’ll try to figure out how to post some east coast pictures and let you know when I hear from the good doctor.

Have a great weekend.

Enjoy this beautiful weather (if you are in Seattle) the rest of you may need to stay inside air conditioning! Stay cool.

Love from us to you

Janet

A Gut-wrenching Decision

My Last Day

Lots and Lots of Hard Work

2nd Cancerversary

Now It Is Time To Play!

That is the summary of my life since my last post…

The last week of school I went into work a number of days, after the kids had left for the day to help clean up and pack up the classroom. I spoke with David about next year; we talked about the timing and the hiring process if I were to let the job go and many variables around this decision. It was clear to me that if I decided not to go back next year, the sooner I let the job go the better for them to be able to hire the right person for the job. There is a lot to this, I’ll spare you the details. I did not feel pressure from David but just asked myself…if my scan comes back looking good, what will I do?

I cried for hours and days and nights trying to make this decision. If my scan looks bad and I have to have treatment…that’s a no brainer, I’ll not go back. But if my scan looks good…what would I do? There was a part of me that wanted to dig in my heels, I’ve been at Pathfinder for 20 years and they can just wait until July. But really… could I make the decision now? If my scan looks good is going back to Kindergarten the best path for me as I continue to fight cancer and heal? There is just no way the answer to that can be yes. How could anyone, knowing all that Kindergarten and Pathfinder demand, think that going back to work full time in the fall would be my healing path? No one thinks that. No one thinks that. Not even me. I’m fortunate (to say the least) to have Mike’s insurance that I can jump onto. So, I decided I had to let the job go. I cried buckets making this decision. I still cry, but not as much, as I really have come to peace with this decision.

I made my final decision on Thursday, the day before the last day of school. Earlier in the week I had talked with my sub Anna and we agreed that I would come in the last day of school and teach along with her (well actually, if you know me, you know I had to take over…I’m very alpha in the classroom, and Anna was A-ok with that!). I didn’t tell anyone at school that day that I had decided to let my job go (except Anna, wanting her to apply for my job). You just don’t drop that bomb when there is so much else going on.

I had a great day! We wrapped the year up beautifully. I brought in black polished pebbles that I bought at True Value. They decorated little muslin pieces of cloth with sharpies, with calming designs and pictures, then picked out 4 pebbles and wrapped them up and tied them with a piece of yarn. After lunch, we opened up our pebble bags and did our 4 pebble meditations, from Thich Naht Hahn that we had practiced all year. It was truly lovely. I’ve heard back from a number of parents about their children wanting to meditate this summer or finding the pebbles under their pillow. I truly was filled up with them and their little selves and their huge egos. They filled me up that day. I could not have asked for a better last day of school.

On Monday I went in to continue cleaning and sorting, packing and tossing, recycling and recycling and recycling…I told David and my teacher friends that I was done. I was not coming back to the classroom. Guess what, I cried some more! Shocking, I know!

On Tuesday Jennifer came down from Bellingham to help me sort through things and she and Genya and I went to celebrate/commiserate/mourn/drown our sorrows at the new burger place in the junction by having cold pressed coffee shakes. Yes, that is right, cold pressed coffee shakes. Just what the doctor ordered. I spent all day Wednesday and Thursday in the classroom. And then Friday I worked all morning and  at noon Mike came in and loaded up my personal bits and pieces, books that actually belong to me or Michael and Maggie from their childhood, a couple of boxes for good will and off we went. Done and dusted. I had to leave notes here and there for the new teacher….I’ll be back to go through these drawers and Crissy is going to take care of these books and a few other bits like that, but for the most part…done. Then I cried some more. 

I think about the kids I would have had in my class next year. I can name at least 10 I would have hand picked, though I know Genya and I would have done some arm wrestling over a few of those, and it makes me sad to think of missing the chance to be their Kindergarten teacher. But my plan is to sub, primarily at  Pathfinder, but elsewhere in West Seattle, also, so I will get to see them, be with them. I’ll get to sub in the classrooms with some of my previous students, as well. It won’t be the same, not by a long shot, but I’ll get some good kid time, some good teacher time, time to read aloud and sing along and then I’ll get to go home and take care of myself and Mike. That sounds like a good plan. Who could argue?

It just so happened that through all of this decision making and work cleaning and packing my classroom I was also reliving milestones from 2 years back. June 28, 2014, Black Poop of Death Day (see my first blog post if this makes no sense and you want to know more). And Friday, as I’m packing up my last bits at Pathfinder, July 1, two years since the day I got the phone call and the diagnoses…stage 4 gastric cancer. To say it has been an emotional time is putting it mildly. It was brutal. But now, I’m on the other side of the cancerversary, the other side of the decision and I am at peace.

Now it is summer…time for play…oh, not yet…we spent the weekend cleaning up the yard and debris around the house prepping to get the house painted. And our generous and talented neighbor Scott the plumber spent hours working on our plumbing and Betty’s so there was lots of under sink work and clean up to be done! Oh my gosh…I’m not complaining, but I worked my ass off for days straight. Actually, I’m not complaining, I might be bragging…because now I can work hard, I’m off the couch and back at it! It feels good to regain some strength and stamina!

Now it’s summer…yes! On the 4th for July 11 of us went for a hike up near Mt. Index. A great 4 mile round trip, mostly flat with a lovely alpine lake for a picnic, kind of hike. Just my kind of hike! We had 2 and a half year old June-bug, mostly in Lizzie’s back pack, 7 year old Conor keeping up all the way there and back, chatting and entertaining us the whole way, Mike and Gillian, Maggie, Michael, Eva, Betty, Mike and me…11! It was cool and drizzly at times, but wonderful. It felt so good to be strong enough to be out and about in nature, reaping the benefits of the beauty of the Pacific NW. I am grateful and blessed.

Thank you to so many friends who let me cry and listened to me as I agonized over my decision. Thank you Mike for just letting me cry…so much…so often. You knew that was just what I needed. And thanks to all of you for your continued support. Our life was hijacked by cancer 2 years ago but we are still here…we are strong.

Love to you all

Janet