Dr. Veena Shankaran at SCCI was lovely, honest, kind, just as Gaby had described. But, she did not have a hidden magic bullet. In fact the chemo that we agreed with Dr. Kaplan was too much of a long shot and could be too toxic, she thought it could actually shorten my life. She talked about my poor, sad, inflamed, pissed off liver. She said it was too diseased to really handle any more poison. She was brave and honest to say that she thought my liver would be what takes me down.  She explained that my eyes would start to yellow, and was impressed that they were not yet. She acknowledged all the tough treatments I had gone through. But the best thing that she said, what I think was worth the price of admission, was that we’d done all we could, had uncovered every stone and she probably would have suggested the same treatments. That really put our mind at rest. We’ve done what we could. I’m  putting healthy stuff in and on my body and I really do believe for the most part it is out of our hands. Right now and from here on out my body is going to do what my body is going to do. And what I’m going to do is try to make the best of the coming days. I may be low energy and coughing my head off, but I can still get out of bed everyday and take care of myself. There is going to be a day when I can’t do that and in the mean time, I’m grateful that I can do that. I’m still kicking!

We had an extremely full and busy Father’s Day, and I’m so glad we did. I enjoyed the day so much. I’ll be seeking out my family to do as much of that as we can. My Kansas City and Boulder people are going to come visit starting right after the 4th of July. They will be trickling in, not staying long, and I’m looking forward to that very much. 

So many of us these days are working on mindfulness and living each moment. As you might imagine, that feeling is multiplied at a time like this.

Miracles do happen and I want to be open to that story, but at the same time I am one to be realistic. I’m working on being at peace with all of this and with getting my “affairs in order.” Today, this moment, I am alive, and really that is all any of us know for sure.

Thank you friends for holding us up.

Thank you all for your lovely texts, emails, replies on the blog and beautiful cards and meaningful messages.

I love you.

Janet

We have so many of you to thank for your outpouring of love and support. Thank you for each text, email, card and post to the blog. We feel you support.

It’s not an easy time for sure. We went to see Dr. Kaplan last Thursday. As the shock of the scan was settling we were better able to listen and hear what he had to say. Neither of his options are good for me. Both of them are a long shot with 10-20% chance of fighting the cancer but they have a better chance of harming me. I might have gone along with one if they were not targeting my already vulnerable points. One is hard on your heart and one is hard on your digestive system. I’ve already been compromised quite a bit in those two parts of my body. Dr. Kaplan supports ending treatment rather than putting myself through either of those options. We agreed.

The kids encouraged me to seek out another oncologist for another opinion. I don’t think I would have done this without their urging but now I am so glad we are. I have an appointment next week with the doctor from Fred Hutch/Seattle Cancer Care who Gaby raved about so much. Gaby’s daughter facilitated our introduction so we were able to get in a little faster than usual, I think. They are gathering all of our records and biopsies from Swedish. I think it will be good to have someone outside Swedish take a look at the problem. I am not counting on anything really, but it is worth a shot.

In the meantime Mike and I saw Dr. Standish and Breanna on Saturday. She talked to us very openly and honestly about death and dying. She framed it all in such a beautiful way. All four of us were sitting close to each other in this tiny, funky office, crying while this healer lead us through a topic that is so hard for people to talk about. We also of course talked about what to do to help my body build itself back up.

Friday, Carrie Rose came over with a doctors box of possible healing remedies. And my sister texted me a list of essential oils to try topically as well as some to take internally. Dr. Standish made a list of about 4 things to do now including the essential oils from Kathy and the green drink and mushroom combo from Carrie. So thank you Kathy and Carrie for your positive input. 

Originally I was going to be doing an IV infusion of curcumin but their source for that has dried up and they do not know when it will be back in stock. So, no IV for me for now, maybe down the line.

If Dr. V at Cancer Care has something promising I will hop back on the poison boat, if not I am feeling really good about keeping toxins out of my body and letting it have a chance to get strong. I will let you know how that appointment goes.

Thank you all for your loving, caring support.

Love from all of us

Janet

I had a scan yesterday that gave us less than favorable news. My tumors are growing, new tumors are forming, taxol and cyramza are not working (well they are working very well at making me sick and tired!) Dr. Kaplan has given us a couple of options: CPT11 or Adriamycin. Mike and I are doing our research today and trying to figure out if I can tolerate either of these. I already spoke with Dr. Standish this morning and she has a plan for me. It starts with a chemo break (which I so desperately need). Very soon I'll be adding IV curcumin and perhaps in a few weeks try one of the chemos with an IV Vitamin C. She is always full of hope and remedies. I also talked to her about thc/cbd. I take a small drop to help me sleep at night, and it does. She is suggesting that I take a drop during the day to see how I tolerate it, and if I do, to slowly increase the amount for it's anti cancer purposes.

In the meantime Mike's toe is healing nicely. We went to see his foot doc, Dr. Labella, yesterday and we got to see his big toe in all it’s glory! Quite a sight. But it was the right thing to do and it is going to be a good big toe for him in no time!

Okay, we need all the prayers and positive energy we can get as we gather info and figure out how to proceed.

We feel you all around us, holding us up.

Lots of love

Janet

I am in awe of the human will to live, to survive. I recently watched a movie based on a true story of a family that survived the tsunami in Indonesia. They were in the thick of things and all 5 managed to survive. A miracle for sure. One part of the movie focused on the mom and the oldest son right after the water hit. Damn, I’m telling you, it was intense. And I thought, how easy it would be to just let go and be done with it all. You know if you are hit by a tsunami like that and survive, it’s not going to be all champagne and roses after you get out of the water! It was a nightmare. But that is what we humans do, we want to survive!

When I go to chemo I see all kinds of people who are much sicker than I am. I overhear conversations that are just heartbreaking. On Wednesday there was just a curtain between me and a young man who must have been in his 30’s. He had a friend there and they were doing a live Facebook video chat. They were so upbeat and positive; focusing on friendship, love, connections. It was inspiring. Then I overheard that he had chemo every day that week. Daily chemo. once every two weeks is enough I can’t imagine daily chemo. But there he is fighting, surviving and being so upbeat and positive. 

My friend Julie sent me a link to a blog that is written by an old friend of hers; Wendy Harpham. She is a survivor of multiple kinds of cancer. She fought for years and has been 15 years cancer free. She had a blog post about the effect of a positive outlook on an illness. The bottom line is that there is a connection between the brain and the body, and having a positive outlook MAY have an impact on an illness, but it most definitely has an impact on how you live or thrive while fighting the illness.

That has been and remains my aim, to fight, to survive, thrive and be positive along the way.

I had chemo on Wednesday, pancaked Friday and even more so yesterday but actually feel a little better today I am happy to say!

I have a scan on June 5 and we’ll go from there!

Mike has been going to PT building up the strength in his knee following his meniscus surgery. Now he is gearing up for surgery on his big toe this coming Wednesday, May 31. He’ll be 2 weeks no weight bearing. He has his knee roller all ready, well he just needs the streamers on the handle bars, then it will be all ready! Lucky for us Mike’s sister Carrie is retiring after 36 years in the Fire Department (most the time as a medic) on May 31. So we plan to call on her for support as she transitions into her new life!

I’m thinking of all my teacher friends as they start to wrap up the school year. June is such a tough month as a teacher in Seattle! It will be staying light until 9:30 and later, kids just want to be outside and play! Then there are all of the end of the year celebrations and ceremonies (not to mention report cards and packing up the room!). Good luck my hard working teacher friends! You have earned yourself a vacation!

Lots of love to you all on this sunshiny, warm day!
Janet

Hello friends

I have a favor to ask of able and willing friends: please donate blood.

I’ve been dragging my self around, very sloth like, much of the time these days. Ever since I was in the hospital in February my blood count has been just above anemic, just above the numbers that would allow me to get some extra blood in my system. On Wednesday, when I went in for chemo my numbers had dropped. So, yesterday I went back to Swedish and was infused with two bags of blood. As someone's generous donation was dripping into my system I thought I would request you all to donate blood and help others in need. I’m hoping this blood gives me at least a little more pep in my sloth like ways. I felt a little boost yesterday evening, for a few minutes and again for a brief period this morning. But, mostly I remain extremely sloth like. It is not my natural state and I’m having to learn to cope with having very little energy. Right now I consider it the cost I have to pay to stay alive. I believe it is the effect of the chemo and hopefully, with the next scan we’ll find this chemo is working a little better and it will all be worth the cost.

In West Seattle there is a blood drive coming up at Holy Rosary School. I cut and pasted this out of the West Seattle Blog. I so appreciate the folks who have donated the blood that I’ve needed over these last few years. Life saving, for sure! Here is a chance to donate in West Seattle.

Holy Rosary School is partnering with the American Red Cross to hold our first community blood drive on May 22 between 2 pm and 7 pm.

Giving blood is giving the gift of life. Please consider donating with us to support this life-giving organization. To register and reserve your spot, please visit: www.redcrossblood.org and enter the sponsor code HolyRosarySeattle (upper right of the page). The event will be held at the Holy Rosary School Hall, located at 4142 42nd Ave SW.

I’m not sure if I mentioned in March that Dr. Standish asked me to be a part of a video promoting Bastyr’s Integrative Oncology work that they would show at a luncheon in May. She asked if I would play the role of a “grateful patient.” Well, I am a grateful patient and was happy to be able to do her a favor. I put on Jathy, one day in late March, and went to Bastyr to be filmed. I can rarely talk about my cancer without crying and knew this would be no different. It was not an easy task, to be interviewed about my shit show cancer fight but it was for a good cause, so I mustered and I cried and I was interviewed by lovely Sarah, and I was filmed and edited and now I’m a part of a video. The luncheon was this week and my friend Beth picked me up and escorted and supported me through the event. It was a delicious lunch in the beautiful banquet room of the Fairmont Olympic Hotel, formerly the Four Seasons. The luncheon turned out to be quite an event! Many people who had worked on the video were there and recognized me and thanked me. Sarah, who had interviewed me, introduced us to the president of the university. The room was filled with local folks who are fighting cancer and who support Bastyr and alternative ways of healing. We sat at a table  with Dr. Standish and mostly young women associated with the university. It was not easy to watch myself in the film, but Beth was very supportive and we made it through. I’m sending you a link, so you can see Dr. Standish in person, learn about why I’m such a big fan of her and Bastyr and watch me struggle not to cry when I talk about this cancer.

https://www.youtube.com/watch?v=UnAm8rFU95I

We have a busy rest of the month of May ahead of us. Mike’s birthday is a week from today and celebrate we must as he turns the big six O! I have my third chemo at this dosage on May 24th. Mike has surgery to fuse his first joint in his big toe on his left foot on May 31. I’m hoping I can leave him at least a little while on June 2 to go up to Pathfinder for Lou’s annual Make-a-Wish run. I never want to miss that event! Haven’t been to Pathfinder since Elder’s Lunch in November…it is time for a visit! And on June 5 I have a scan that will show that this chemo is working! 

It was a dark and dreary winter on so many levels. Now that it is spring, I feel so much better in spite of my sloth like ways.

Love to you all

Janet

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