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