Pheeewwwsssshhh!

What a busy time!

I flew in Thursday night from KC, had chemo Friday morning then had an appointment in Wallingford with Dr. Standish on Saturday. Yesterday we had brunch here with Betty and the kids. Jennifer was in town and yes, come on over, which included a short but sweet visit from her sister Ali and family. If I could subtract the chemo, it was all good stuff!

KC was great; exhausting, for sure. There are not many who can keep up with my sister and her daughters (we missed you Jamie), and I knew better than to try. We had time running around a bit and time hanging out at mom’s, which is just what the doctor ordered. Mom and I joined in when we could and rested when we needed to, just like I had hoped. I saw my brother Paul several times and had time with his kids. I saw all my silly, funny, crazy aunties and many of my cousins. Actually I saw a few of those folks multiple times, which was awesome. Mostly, I hung out with mom and Matt, which was the original point of the trip. I ate BBQ, of course, more than once. Had my Winstead’s burger with just a few fries, I stayed mostly away from pastries and candies (mostly). I went to my most recent favorite spot, The Blackdog Coffeehouse for toast and a macchiato. When we weren’t eating out I kept to my usual healthy food. The trip was terrific! Can’t wait to see you all again!

At the airport I started my fast to prep for chemo. I fasted from about 1:00pm our time through chemo and then 3 more hours after that. That was about a 27 hour water only fast. You know, I have no idea if it helps, I can only hope, and since I am resolved it was not difficult to do at all. I have to fight cancer. I have to try what makes sense to me. Since then I’ve stepped back into the keto-diet. Over the weekend I eased into it without logging every bite into the app on my phone. Today I opened up the app and started logging, just to be sure I am remembering ingredients and portions correctly. Hopefully I’ll burn up my glucose and rely on ketones for fuel. Cancer eats glucose, not ketones! We’ll never know if it is really working, but I’m giving it a try!

Originally my taxol was given to me at 80 units (what kind of units? I do not know!). After my February stint in the hospital it was cut in half to 40. Now that I've tolerated it and we think it might be working, he's upped it to 50 units. I seem to be handling it just fine. I really don't feel any different than after the last treatments. What I have learned is that the effects can be cumulative, so we shall see! So far so good!

My favorite student of Dr. Standish, Breanna, was with her on Saturday. They both took me in the little room of the clinic in an old building in Wallingford and listened to my update. I had not seen them since the scan. Dr. Standish understands and agrees with Dr. Kaplan’s plan. It is always nice to get this kind of reassurance. They are both so encouraging and supportive, I so appreciate their part on my healing team. After updates, Dr. Standish put in some acupuncture needles to help me with my energy and Breanna gave me a reflexology session. It was a little like a spa appointment…lovely!

On a completely different note: Eva and Michael have wanted a dog so very, very much for a very long time. Now their wish has come true. Yesterday afternoon a rescue organization delivered Petey to their apartment. They had read about Petey on line and had met the foster mom and Petey one afternoon. They fell in love. I worked long and hard to talk them out of a dog at this stage in their life, and I think I helped them put it off for a while, but they fell for Petey online and that is that. Well, many of you might know that Wilson can be reactive to other dogs. And I have figured out that I am a “my dog” person more than a dog person. With that combo I’m not sure how long it will be until we see Michael and Eva again! With that in mind we had a lovely brunch yesterday and when they left here they were full of anticipation waiting to adopt Petey. We have a plan. My part of the plan is to meet Petey and fall in love with him myself, first. Then, as a bit of an anxious person, they all want to do the slow but sure introduction of the two without me. Not sure my control freak self will be able to handle that, but I know I don’t want to express any of my anxiety to Wilson! So we shall see. I’ve reached out to Danielle at Dog’s Day Out who helped us with Wilson. She has sent me some tips and links to help us in the introduction of the two pups…wish us luck!

Jennifer was in town from Bellingham and it worked out for her to come by for a visit later in the afternoon. She always makes me laugh! I really miss spending the better part of the day next door to her and sharing hilarious stories and the trials and tribulations of Kindergarten and first grade. She is a treasure and such a great friend! Her sister and family had dropped her off and when they came to fetch her they joined in for a visit. Ali’s husband Ryan and their two boys went downstairs to find Mike at his lathe. Ryan has a job similar to Mike’s job and they like to connect when they can. Gideon and Kincaid went to work to update our chalkboard wall and Jennifer, Ali and I had a little more time to chat. It was a lovely visit. Thanks my friends!

Today was cool and drizzly, a perfect day to sleep in, catch up and start over.

Sending lots of love to all of you.

Janet

We are calling it a win…

After a CT scan mid day and a long wait until it was time to see Dr. Kaplan we got better than bad news, so we are calling it good news.

He referred to the scan in January as showing the cancer “exploding.” In February, while in the hospital with side effects of chemo the scan showed that the chemo was working a bit…not a big reduction, but the tumors were smaller than January. Now, most of the tumors are the same size as they were in February. A few have grown by 10-20% but most of them look the same. 

Mostly not bigger, at this point, we’ll take that!

Not surprisingly he is suggesting that, if I’m up for it, to increase the dose a bit, not a lot, and not more frequently, just up the amount a bit. Well, hell yes. I’ve come this far. I’m fighting the fight. 

Friday I hop on a plane to KC to visit family. Now that this scan is “good” I get to be excited about this trip. And I am. I’ll be back next Thursday and back to work at Swedish on Friday. I've let the keto diet go but will get back to it after this trip. Too much sugar in BBQ sauce to be in ketosis!

Thank you all for your unwavering love and support.

Janet

Here we are

3 more chemos down and a scan to go. This time of the treatment schedule is a little like limbo. Just waiting to know what the scan will tell us. I am more hopeful than I’ve been in a while, but I’m not counting on great results. I’m having symptoms that I just can’t ignore. Hopefully they are side effects from chemo rather than the cancer talking. Time will tell. Breathe in and breathe out. As Thich Nhat Hanh would say, “Breathe in, I know I’m breathing in. Breathe out, I know I’m breathing out.”

The scan is  on Wednesday, then Friday I’m headed to KC to visit my mom and brothers. Kathy and Mickey and Amy and Lucy are driving out from Colorado, and of course I have many aunties and cousins to visit! I’ve warned my mom and sister that I am super low energy. Most of the time I feel like I’m wearing a ton of bricks distributed across my body. Feels like anemia, but it is not. It’s either the cancer or the chemo??? It will be a challenge to make a trip to KC, but I’m doing it. Getting to fly Alaska non stop really helps. Great airline and easiest way to KC.

Keto diet is still the thing. I got into the swing of it and it became easier over time. I fasted before and after chemo yesterday, and hopefully the cancer cells swallowed that chemo right up! I’m backing up from full keto starting today. Nothing drastic, just letting a few more veggie/fruit carbs down the hatch. I definitely will not be full keto in KC so thought I better ease off rather than an over night change. I have very good intentions of staying near keto in KC, but we’ll see…that is no easy task! I’m talking BBQ, of course!

Hope you all got to get out and enjoy this beautiful spring day. Michael came over and Mike and I worked with him outside all morning…benefits of steroids!

Short and sweet today, I know that is not like me. 

Love to you all

Janet

At this very moment I am sitting in our dining room, reading about my new favorite topic: the ketogenic diet. I look up and out at our birdhouse attached to the deck and witness bird love.💙

Now they are fluttering in and out and back and forth with bits and pieces working on their nest.
Mama bird is peeking out of the house, checking out the view.
Papa bird is on the ledge checking his point of view.
The sun is breaking through the clouds.
They're love birds!


Yesterday I wanted to share Mark Nepo's April 5th entry from The Book of Awakening. It too is about spring...here is a bit of what he said.

April 5
The Courage of the Seed

What a powerful lesson is the beginning of spring.  All around us, everything small and buried surrenders to a process that none of the buried parts can see. And this innate surrender allows everything edible and fragrant to break ground into a life of light that we call spring. 

In nature, we are quietly given countless models of how to give ourselves over to what appears dark and hopeless, but which ultimately is an awakening that is beyond all imagining. 

As a seed buried in the earth cannot imagine itself as an orchid or hyacinth, neigher can a heart packed with hurt imagine itself loved or at peace. The courage of the seed is that once cracking, it cracks all the way.


This is not the entire passage, but it is the part that speaks to me. I try to imagine the cancer cells breaking away, being swept away and my healthy cells blooming and taking over their rightful place in the garden.

I am coming to peace with keto. I still spend a good deal of time on my app, working out what I can and can't eat to work towards ketosis. I'm committed to staying on it through chemo next week. The following week I have a scan. At that point everything is up in the air waiting for scan results.

The clouds are back, the bird couple flew off a few minutes ago. I'm glad I was here to witness that bit of spring.

At least to some parts of the country I say Happy Spring. To you guys way up there or way over there, it will come!!
With love,
Janet

Down a Wormhole

Isn’t that the real name of the internet? Well, what ever you call it that is where I have been, and I have to get out! I’m hoping writing about my latest obsession will help me find my way out!

When  I was diagnosed I was warned about the internet and I really did not do too much research. You know, who is to be believed? It’s a wormhole. There is just as much bunk (perhaps more bunk) than truth. Once I found my oncologist and my naturopath, I really stayed away from the wormhole. I have two highly regarded, experienced and trusted people to lead my through this cancer. I rely on them. I also have a stomach cancer website that I use to connect with people and  read about issues regarding stomach cancer.

Just two weeks ago, my sister, Kathy, sent me an article. It was a cancer article. One of those I might have looked at before I had my guides. The article came from a reliable, highly respected physician, to my nephew, Jamie then to Kathy. She said she wouldn’t normally send me this kind of article (and she hasn’t), but because of the source gave it more weight. It’s an article that could be lost among the thousands of articles out there about augmenting cancer treatment. It was not an “instead of chemo” kind of thing, but in addition to chemo…how to  help make chemo more effective. Mike and I read it, it made sense, knowing the other things we already know about cancer. We read more about it in the wormhole and then found it had been published on a website that publishes lots and lots of alternative treatments for all kinds of things. When I saw that, I was turned off. It was that kind of website to me. Cure this with blueberries, cure that with walnuts. But I had researched enough before I saw that site that I was still intrigued. So I passed it on to Dr. Standish.

Dr. Standish had heard a great deal about what she called the “Turkish Method”. There are quite a few components, many I will not be able to do, but what I was most interested in was the part I could control without extra doctors or dollars. It prescribes a ketogenic diet and  fasting. I was just winding down from my low fiber diet so, what the heck, I can do any kind of diet! There are several versions of the ketogenic diet. It has been around for years. There is a version that helps control a certain kind of epilepsy. It is quite common along with intermittent fasting for body builders. And now there is a version to augment chemo therapy. Unfortunately, Dr. Standish did not have a lot of details, but there are plenty of details to be found. And I decided (in hindsight too quickly) to start right then. This was a Monday, last Monday and I had chemo on Wednesday. Maybe I could effect this chemo in a positive way.

All cells use energy.  Mostly carbs that are readily available in most of our diets. If you cut way down on carbs, eat a moderate amount of protein (because cells can get energy there, too) and increase the fats in your diet then your cells will have no carbs or glucose to use for fuel. Your body then produces ketones for your cells. Your typical cells know how to use ketones for fuel and cancer cells are just stressed that you’ve cut out the carbs and glucose AND they can’t use ketones for energy. 14 hours prior to chemo you fast, I think your typical cells kind of hibernate at this point (might be making that up) so, when that chemo comes in, it has glucose and the cancer cells lap it up. And your typical cells are doing fine on the ketones. Anyway, that is my version of cancer and ketones.

I’ve known that sugar is not a good source of food when you have cancer. Actually, we all know it is not good for any of us. Yet, there it is. I’ve cut out sugar and carbs from my diet off and on plenty of times. And I do not have a sugar habit at all. But I’ve never just said, ok, no more sugar because of cancer. I also am trying to live a normal life off and on while fighting the beast. A balance is never easy to find. But, for a limited time I could try this keto thing, so in the wormhole I go.

There are many, many websites, videos, blogs, books, ebooks articles and more about the ketogenic diet. Not as many for keto and cancer, but there are plenty of those, too. This diet is a fat heavy diet with 75-85% of your diet coming from fat. Protein is kept at 12-20% and carbs get the little 2-5% that is left. This I have found is no easy task. I have used the app Myfitnesspal to help me track and in the past week the closest I have come is two days in a row with 76% fat, 16% protein and 8% carbs. I am a veggie first person! I’ve always known that good fats are good for you! But, oh my, this is really tricky! The high fat is very filling and I’m eating much less volume than I usually eat and so to keep the ratio of carbs low, that is a very small amount of the lowest carb veggies!

Moving to a keto diet you are warned that initially you will feel sluggish and low energy. Well, chemo does that already and with this on top of it… I am really sluggish, really, really low energy. And with the little energy I have I am trying to turn my diet upside down!

I found a great advocate, cancer survivor, nutritionist from Ireland that has loads of information. Today I was reading her warnings to start slow and have a guide. I dove in with the help of Betty and family, but no experts. Today I feel like throwing in the towel on this. Most websites are only so helpful and then they want money for more details, more help. It is a struggle knowing who to trust inside that wormhole. I did order one book on Amazon and already sent it back! While blogging my gmail is peeking up to the left side on the screen. I got a reply from a nutritionist that Dr. Standish suggested. She is in Seattle and does help people with a keto diet but does not have experience with the cancer specific keto diet. I stopped to take a peek and she only wants to charge one arm and one leg…not both! I did seek guidance from the nutritionists at Swedish. Laura was helpful, and I have a call into her for some more support.

I’m not sure what I’m going to do. Other than take a nap. But at least for now, prior to chemo next week, I will do high fat, medium protein, low carb, I just don’t think I can keep trying to hit this high bar. I will do the fast 14 hours before chemo which is no big deal since chemo is in the morning. Other than that, no promises. I really, really miss my veggies!

And to my very dear meal train friends: because you've been feeding Mike, we have not had to think so much about his meals and have been able to put more focus on this keto puzzle. So, thank you, immensely! 

I’ll keep you posted

with love 

Janet

PS on a completely different note, Maggie is looking for a housemate from May 1st through Aug 31st. Cost is $888 a month plus utilities. It is a sweet little house in a primo spot in Fremont. Perfect for a summer intern…anyone know anyone?

I have to admit I’ve never been to a Jewish ceremony without leaving and thinking, I wish I was Jewish! (We live in a very progressive part of the country. I’m sure that is not the case for every Jewish community in the country, and now we are having  these ridiculous times with so many threats to Jewish communities…I can’t even begin to go into feelings about that.) I’ve been to several Shivas and Jewish memorials that have been so touching and emotional. I’ve been invited to join Chanukah and Passover celebrations in the past. I am always so impressed with the youth during their Bat Mitzvah or Bar Mitzvah. The community I participate with the most is a very joyful, progressive, inclusive community in West Seattle. I have many friends who are members of that congregation and every time I’m invited to join them, I am so impressed with the abundant love they share among themselves and beyond.

But my point is that one of my favorite things about Jewish tradition (I know this is silly, but it is true) is the ritual of Spring Cleaning that comes with Passover. Yes, I am one of those! I used to really get into spring cleaning marathons (of course they were in the summer after school was out) but I simply do not have the energy to sustain that kind of activity. So, I really needed Mike. Monday morning, one full week after chemo I woke up feeling energized and overall better than I have for a long time. I really think Gaby was pushing me out of my funk! AND I realized I had Mike trapped! He was off pain killers but couldn’t drive yet. He had done a great job of icing for more than 48 hours. He was feeling lots better. It was a rainy morning (shocking!).  We started with his closet and drawers. I worked on a couple of mine at the same time. In the afternoon, for our big outing, I drove us to the Goodwill drop and we left 3 garbage bags and 2 paper bags worth of sweaters, coats, shoes and clothing. I felt the bedroom breathe a sigh of relief!

The next 2 days taxes hijacked my greater plan. Of course it did not take the full 2 days but I could not rally to bring on other projects at the same time. Thursday came and we tackled one of our hall closets that morning and on Friday morning the other one; the one known as the hardware closet, the battery closet, the lightbulb closet, the dvd closet, the game closet…you get the idea!  I could not have done those closets on my own and it feels so good to clear out the old. Mike took baby steps back to work starting on Thursday with an afternoon meeting and Friday afternoon in the office (I think my cleaning jag had him pining for work!). But we made a dent and on the rainy days ahead I can finish up where we left off.

We did have some sunshine this week that we tried to take advantage of, too. Thursday afternoon was lovely and I made it outside to do a little yard work for about half an hour or so. Spring is definitely trying to break through this dreary winter. And I am resolved, on sunny and warm days, to get my butt out of this house! I need some of nature's Vitamin D and all the good that comes from our extremely beautiful corner of the county. 

I’ve had many messages of love coming through various forms of communication this week. Including the yummy food from the meal train and others. Your generosity and goodness often make me cry, which is a good thing. Thank you all for the food, messages, cards, thoughts, prayers and positive energy in any form you muster!

Tomorrow I see Dr. Standish. Tuesday will be sunny and you can find me at Alki in the afternoon (just putting my request to the sun out to the universe...). Wednesday I have chemo. Then I have 2 weeks to feel better again.

Lots of love to you all.

Janet

Soon after I was first diagnosed with gastric cancer I had people from two different circles of my life telling me with urgency there was someone I needed to meet; Gaby. Jodi is the mom of one of my former students, Aran, and she worked with Gaby at Harborview. Glenda was a former student teacher of mine and a good friend of my friend Eddie. Gaby and Glenda had run a catering business together years ago and continued to be good friends. So they hooked us up and I had my first stomach cancer friend.

 I know I’ve mentioned Gaby on the blog more than once; she and her family were the force driving the fundraisers the last 3 years. Our cancers were very different; they were both gastric cancer, stage 4 but they were different kinds of cancer metastasizing in different ways. I’m so very sad to say Gaby passed on Friday. She was at home with her family at her side. 

Just the week prior Gaby was going to come visit me on Thursday the 9th. On Monday she let me know that she would not be able to make it. Things had taken a turn for the worse for her. Luckily I was feeling well enough by then to make the drive to Ballard so I went to visit her. I am so glad that I did. There was no question what was happening. Her time was just about up. I was unaware that some time ago Gaby had been told she had six months to live. She was the picture of peace and grace, she was as ready as one can be. Just by visiting her that day I know I learned some lessons.

Gaby was a force for good; a tiny woman with seemingly unlimited energy. She had been diagnosed with cancer about a year prior to me. She tried chemo once, I believe and knew it was not for her. She went on to take part in more than one clinical trial through Fred Hutchison and she did very well on Keytruda. It shrunk all the tumors in her liver (one of the reasons we were so hopeful about Keytruda…everybody’s body is different, for sure). Between and during these treatments Gaby went on to live her life. She traveled a great deal. She kept working full time up until recently, then cut back  and was working part time until maybe 2 weeks ago. She even went in just the week before last to tie up loose ends. She was a force and a ball of energy for all things good!

Yesterday we went to a gathering in her home with her husband Don and her 2 grown kids Ari and Miles. I was happy to meet some of  Gaby’s friends and her mom. I knew Gaby was a generous, patient, kind woman, and all of that was reinforced with more details of her life. It was a beautiful gathering. There will be a memorial later this spring.

I’m sure you can understand that there are no words for me to say how much I will  miss Gaby. We did not see each other alot, but we typically emailed once a week or so to check in on each other. She was a lovely, couragous, generous, caring friend.

updates

I had chemo last Monday and had the typical tired, kind of depressing days following chemo. I was feeling well enough to take Mike to have his meniscus surgery on Friday. When he was released to go home he was actually able to bear weight and has not needed crutches or even a walking stick. Friday night, due to all the local anesthesia he was doing great. Saturday and Sunday the stiffness and soreness set in. He did a great job of icing and elevating so I think he is doing as well as he could. He wants to be an un-patient patient but I try my best not to let him. He is wanting to start rehab and it is only 3 days after surgery. The doctor said 2 weeks rest for the knee and I made sure the doctor repeated that a few times. I still have to remind him it is NOT time for rehab. That knee needs some time to heal.

Today is one week from chemo and I woke feeling better than I have for months. Seems 1/2 dose might be a more reasonable dose for my system. And that thought of a whole week before chemo makes me so happy!

So we are well. Fighting the fight. Healing….healing…healing.

Thank you Lisa D for starting the meal train for us. This is perfect timing. And thanks to all the meal train contributors. We so appreciate you helping us while we are both trying to heal.

My love to you all

Janet

PS: I am unable to reply to my replies on previous posts. For awhile I could reply on my phone, now that doesn’t even work! So to those who have left comments. I thank you.

Marcia, it is so good to hear from you! I still am so very grateful for you for all you did to help Michael and Maggie at WSHS. I don’t know how they remain operational without you!! Hope you are enjoying retirement!

Shelly, hope that puffy coat is working out for you in Minneapolis! Hope you are well. We miss you!

Kathy, Thank you, we could definitely use some of your sunlight! Soak it up!

Thank you, Kay, I appreciate you keeping up with us! Hope you are well.

Marsena, Love you always, xoxoxoxo

And of course, xoxoxoxo to you and all of yours Jamie!