Seattle Times Obituary

Hello dear friends and family,

http://www.legacy.com/obituaries/seattletimes/obituary.aspx?n=janet-leigh-osborn&pid=186693735

Here is the link to Janet's obituary in the Seattle Times. It will be available to view online long term, but will only be in print tomorrow, September 19th. It is fairly brief because we have something longer in the works that will be available to read at www.emmickfunerals.com very soon.

Memorial details

We will be celebrating my mom's incredible life on October 8th at Pathfinder School (1901 SW Genesee St. Seattle, WA) from 11:00am-2:00pm. There will be some speakers, time to mingle and share memories, and refreshments. There will be an official obituary soon, I plan to share details on how to access that on this blog.

I hope to see you all at the memorial!

All the best,
Maggie

I am so sad to say that my mom passed away yesterday morning, Wednesday, August 23rd. My dad, Michael, and I were right by her side and she went peacefully. We are heartbroken.

My mom wished for us to be surrounded by friends and family shortly after she passed. We will be having an open house/pot luck this weekend, Saturday and Sunday from 11-4 each day. Please come to share stories and love. We will be having a memorial service at a later date.

Thank you once again to everyone who has kept up with her experiences through this blog. It was so important to her.

With love,
Maggie

August 20th

Hello everyone, Maggie here again. We wanted to update you on how my mom has been these past couple weeks or so. She has been on the decline. She needs support getting around the house and spends most of her days sleeping or just with her eyes shut. She’s not eating or talking much and gets confused at times. Michael, Eva, and I have been staying with my parents full time since last weekend. She is receiving support from our wonderful hospice team as well: nurse visits a couple of times a week, meetings with the social worker, and baths from her bath aid three times a week. Starting tomorrow, we will be receiving support from a long term care agency. As a family, we are not 100% sure how this is going to best work for us, but for this first week we are going to have someone stay with us through the night to help out when mom gets up to go to the bathroom. As school starts back up and we need to head back to work, we may switch to more of a day time schedule, we just don’t know yet. We know that this is hard to hear, and maybe not what some of you were expecting to read, but we agreed that it is important to be open and honest about what has been going on. My mom has loved keeping this blog, not only as a way to report on how she is doing, but as a way to vent, or rave, or otherwise express how she is feeling. I think that knowing so many are out there reading, supporting, and connecting with her has been so important. 

On another note, these two are celebrating 29 years of marriage today! 

I’ve heard that the cake was terrible, but the party was kick ass. I wish I could’ve been there. What I know for sure is that my parents were celebrating true, pure, unequivocal love that day. What an example they have been to us all! Happy 29 mom and dad!

August 4th

Happy Hot Summer!
We look forward to them so much and then quite readily are ready for them to be done!
I like to get warm to the bone, for sure, but I also really really need to cool off.

I am having a difficult time figuring our "where I am" on my life to death continuum and it is even more difficult to communicate that to others.  In addition it is a fine line between being honest with oneself, with others and with keeping my head in or out of the sand. No one has a real time line for me.  No one has a real time line for anyone unless they are moving quickly to their death. Then it is a little easier to predict the timing.

I am under the care of hospice and have been since before my family was here. I had oxygen when my family was here but had no other assistive devices. Now I have a shower chair, a hospital bed, a nurse, Teddy who I see once a week, an OT I've seen just once but will see weekly for a little while. I see a social worker. I have a massage therapist but only get to see her 4 times total.

After my family left I went to see nearly every one of my doctors and hospice folk, as well as a new physiologist who is unique, wonderful, and a new hero for me.

I've had a lot of med changes which put me through a big spin and lots of emotions and struggles. I THINK AND HOPE all that struggle is settling down now.

First, I am NOT on my death bed.  I get up every day and do most of my own self care though Mike helps me with a few things, mostly anointing myself with essential oils nearly all over my body, thank you my Gilroys for all my oils!

I am still eating and feeding myself though I am easting less and less, which can be so very sad, like when we had French Night last night and I did not physically have room for all the food.

I mostly plan and organize my day though I'm having trouble with some executive functioning skills.

My struggles include fatigue, extreme fatigue like dozing off now and then as I am typing right now. Some days when I wake up I literally want to go right back to bed. I can balance and walk though only a short distance. I use a walking stick or a wheel chair when we are out and going a great distance.

I have a hard time following my own train of thoughts, I have trouble with memory. I cannot possibly keep up with texting or emailing, I am not replying most of the time. When I try it feels like I am drunk texting...not that I would really know what that feels like!

I have pretty big case of adema and there is no where for the fluid to go, so I am back to a low sodium, low fluid diet. No good to be limited fluids on these hot days.

I am overwhelmed with gratitude for the love I am receiving from my family and close friends who are very respectful and understanding when I say I cannot see them and also when they are here making me laugh so hard and helping me do the simplest of things, like Maggie sitting here right now ready to fix this post up for me. I am so fortunate that it is the summer and I get to have my family around so much.

Thank you all for your love and understanding and support. You are helping to keep me alive. For real.

I love you
We love you
Janet

Photos from French Night

August 1st

Hello everyone, this is Maggie, blogging on my mom's behalf. She hasn't been able to make it to the computer and asked me to pass along this message:

"I'm running out of steam. There are relatives and close friends that I really want to see but don't have energy for. Recently I haven't been able to gather up energy. I'm very lethargic and having trouble balancing fluids. A little bit dizzy and uncoordinated. My liver, lungs, and heart are all struggling. I saw a number of doctors this week and they've all been very helpful, but I continue on this downhill slide."

She wanted me to say that she really hopes that she starts to recover, and if she does she would love to see you all. She loves you all very much.

All the best,
Maggie

“We are here! We are here! We are here!”

Horton Hears a Who

Dr. Seuss

We are still here! We made it and I am letting you know that I am feeling and doing better than I would have predicted 2, 3, 4 weeks ago. No yellow eyes! No jaundice that we can tell. My liver continues to be quite inflamed and angry but I would not say it is worse as far as I can tell. I am usually in no pain. I occasionally have what I think of as radiated pain from the pressure of the tumors to any number of nerves inside of me. My cough is definitely worse and I need to take more and more meds/supplements for that. I continue to have shortness of breath, weakness, lack of energy, but my energy is quite a bit better than it was with taxol in my system. I have an oxygen pump that is probably helping me. I wear it all night and off and on through the day.

The family party ended Monday and I have been fairly busy catching up on this and that since then. Today I am resting, finally!!!

I shall share stories of the revolving door reunion soon. But, today I am resting. I shall share stories of my children and their fabulous friends soon, but today I am resting.

What  beautiful summer weather we are having. I hope you are enjoying it as much as we are!

With love and gratitude,

Janet 

Happy Independence Day

Fair warning, I’ve been working on this post for a few days so it’s a little extra long…

When I was pregnant with Michael the summer of 1989,  Mike and I lived 1/2 block up from Alki beach. It was a blessing to be able to waddle down to the beach, 8-9 months pregnant, on the hottest of August days and catch a breeze. It was a perfect world to have all of Alki to walk and take time to be grateful, to reflect and to plan. At some time during that summer I came upon a word. I don’t know where I found it or who gave it to me but it has been a word I have savored and benefitted from ever since. The word is Open. I clearly remember walking on the beach, in the salty breeze doing some self talk, visualization, meditation and using the word open as my mantra. I used this word very liberally. I used it to mean and to visualize (TMI ALERT) my cervix opening gradually for this baby to emerge. I thought about it as my own state of mind to be ready and open for what ever this baby may offer in gender and temperament and all the other variations on a baby theme. I visualized Mike and I being open, together for this next amazing experience.

Then I had a baby and then another and have no idea when I ever might have had the time to think of the word OPEN again! But I know it flowed in and out of my mind over the years.

In the summers between teaching I typically spent a good deal of time reflecting on the past year and planning the next year. More than one year the word OPEN would not leave my mind. Through my curriculum and time with kids I found the word and concept very appropriate. “Our hearts are open to new friends, to giving and receiving kindness, to giving the benefit of the doubt (always a tricky one!). Our minds are open to consider new people, new friends, new ideas, new challenges, new points of view. I am open to the idea that I can do more than I ever thought I could! With open hearts and minds we are more relaxed, calm, in control of our own body. I compared an open heart to the Grinch’s tight heart which made him unhappy, jealous, angry. With open hearts and minds we can build a more peaceful community.

One year I had a little girl named Molly. Her dad was an artist and she and her dad painted me a beautiful “thank you” piece. They nailed a large cut metal heart onto a painted blue piece of wood. All over the blue in different sized letters in pink and white they painted the words “thank you” over and over. It is a treasure to me. In addition that same year her dad had some of his work on sale at Hot Wire Coffee near the post office. Mike and I went in there and there was a small block of wood, painted red, with a pounded metal heart in the center and the word open painted on the heart. This piece spoke to me and Mike bought if for me. It has been in our kitchen windowsill ever since. It has been a reminder of grounding me to what is important; having an open heart and mind. It helps me relax, be more patient and of course reminds me of Molly and so many of my teaching experiences.

Now I am calling on this mantra again. This is a new take on the concept. I am open to a miracle. I am open to staying alive as long as I can, to moving toward health. I am also open to the possibility that I am dying. I am open to talking to my family and close friends about death, dying, fear and courage. I am open to help us prepare for my death; physically, emotionally, spiritually and honestly. Our society is not known for facing this head on. If I was taken quickly in some kind of accident I would have nothing to do with this part. As hard as it is not really knowing what is going on in my body or how long I might be here I am grateful that I do get to be here for this part. Now that we are at this place I can’t imagine leaving my family with all these details and decisions. And I actually appreciate having this opportunity.

Don’t get me wrong, I have not nor will I give up hope for a miracle. I know they are real. It could happen to me. But in the event that it is not in our cards I am trying most of the time to keep my head out of the sand. To being honest and real and present. And, also of letting myself stick my head in the sand when I need or want to.

I’ve had some good days lately. We’ve had lots of folks coming by for visits but I am also learning to put up some clear boundaries and learning to protect myself. Friday I was joking that I put a hex on our house and would let no one in! Mike and I had a few easy tasks to do out and about and a few things to do here. It was good to have just the two of us for the day. Saturday ended up being more like a spontaneous party from 10:30 am to 9:30 pm! That was great, too. It’s a balance. I’m trying to honor my limits and having quiet time alone, or just Mike or Mike and the kids and the circle of friends out from there.

But now we have another hex in order to have time to get ready for the relatives. Mom, Matt and my niece Jennifer fly in tomorrow evening. My sister and her husband on the 6th. On the 7th it is Lucy, Abbe and Jamie. In all I think there will be 12 visitors, from Kansas City or Boulder though not all staying at our house and many are coming and going in just a few numbers of days! I’m really looking forward to spending time with my family, especially since I am feeling a little better. My mom will be here and that will be the most difficult. She loves denial and this is a little too much for any momma to bear. I am being honest with her, but mostly I have to be gentle. I can’t imagine being her.

Yesterday Mike and I went to see Dr. Standish. She is clearly pleased that I feel better, really that is her role, help me feel better. A combination of getting the taxol out of my system and getting good stuff in, along with prescription drugs to help with my shortness of breath and coughing, it all must be helping! She also said she has never had a patient face death quite like this; so honestly and head on. It took some dark days but now it feels natural for me to think about plans around death, dying and what happens around here after that. It’s feeling natural to think about it, but it is trickier to talk to the people who love me. We are working through it.

Through all this we have passed through the 3rd cancerversay. June 28, 2014 was BPOD day and July 1, 2014 was diagnosis day.

Three years with stage 4 gastric cancer, I feel some partial success here. I am so grateful for this bit of energy. I am able to get out a bit, interact with people, flirt with little kids at the store or the beach, have spontaneous chats and interactions with neighbors and strangers…somehow that feeds my soul and makes me feel so very normal. I love that! I love laughing with Mike and the kids and Betty and Carrie and other close friends who have been showing up and helping me get the house ready for the relatives, or bringing us food and just relaxing with us. It’s been really lovely. I am grateful to have a better appetite, to have a little less cough and to have gotten rid of the edema that was so uncomfortable in my legs and ankles. I am also so grateful for this lovely weather, it is just perfect!

I am looking forward to enjoying my family and grateful that they are on a rolling schedule coming in and out of town. They will be gone after July 18 and I will take stock and let you know what is going on then.

Sending you so much gratitude and love for every bit and different kind of support we have received.

Janet and Mike

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

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!

Rebuilding and Healing

That has been my goal this week. 

Rebuilding my stamina and strength,

Healing my heart and soul.

I use this word frequently…slog. It has been a slog. I picked that word up as we hiked up the cliffs near Kilkee in Ireland. As I huffed and puffed my way up someone said to me, “It’s a slog, isn’t it?” I’ve held on to that word and used it liberally. Yes, it is a slog.

I have been persistent on the treadmill and with some easy yoga  and my meditation. I’ve been consistently but slowly progressing my diet, eating lots of protein, but still low fiber all around. It’s a slog, but I’m not giving up.

Tomorrow is my next chemo. Haven’t had chemo since early February! I feel the tumors growing so I am anxious to get back on the poison. I think my stomach is ready to take it but I fear the little energy I have is at risk. Last time I spoke with Dr. K the plan was 1/2 dose every other week. We’ll see if I can tolerate that amount and if that amount is enough to fight the beast.

Mike's toe is well healed! No big bumps in that road. This week he has a second opinion on his knee and may be getting meniscus surgery on Friday. We have his sister Carrie to help us that day and the kids on board for the weekend. I'm calling us a Series of Unfortunate Events...but this is enough! Wouldn't you agree!

I braved the world (ok, just West Seattle) last night. I put on Jathy and we went to the Admiral Theatre to see Hidden Figures. What a fabulous movie and a story that needed to be told. Don’t think I would have done it without Jathy. She gives me the super power of not looking or feeling so very sick!

Here are some pictures I meant to post last week…

Thank you all for emails, notes, visits and love and support from near and far.

We send our love back to you!
Janet

Kathy and me in 2013 smooching on her grandson, Hunter...very smoochable baby!!

Kathy's hair a couple of weeks ago.



Kathy's hair cut!

So cute and sassy!

Me and Jathy!

My sister Kathy and I looked nothing alike growing up. She was tall and thin with red wavy hair. I was short and squat with straight light brown hair. No one would guess us to be sisters, really. As we aged we grew to look more and more alike until as adults people just rolled their eyes when we would identify each other as a sister. “Oh really, I never would have guessed!” they might say. One time my mom was visiting us here and then she flew to Colorado to visit Kathy. As she was going up the escalator in the Denver Airport she saw Kathy, thought it was me and wondered how I beat her to Colorado? One of the things that identified us so easily was our hair. Hers was still wavy and long and mine was still straight and usually shorter but we transitioned through the same spectrum of colors: reddish, blondish, grey-ish, white-ish and so on. Our brother Paul has our same color hair. Miraculously, our mom’s hair is still red…hmmm! Amazing!

A couple of weeks ago Kathy called me and told me she decided to cut her hair. She’d already made many phone calls and found a place in Kirkland to make a wig from her hair for me. I was shocked and surprised. This was completely out of the blue.

Kathy has always had long hair and at that time it was really long! I called and made an appointment with Kurt at Anton’s Hair Company in Kirkland. I had to cancel this first appointment as I was in the hospital. But Betty and I made it out there on this past Monday for my fitting. Kurt was so kind and lovely. He showed us Kathy’s hair, already there and waiting. He told us all about the process and then put thick plastic wrap to cover my head. Next he took tape and taped it across my head to form the shape of my skull. He trimmed the excess plastic and voila! There is my skull shape. 

The turn around was quick! Friday my friend Beth took me back to Kirkland to meet what we now refer to as Jathy, my new wig! I was overwhelmed! It fits perfectly. He used double stick tape to secure it to my head. He brushed and styled it. We left it a little long and no kind of bangs yet, as this cut will not grow back, and I can always cut it a little more later if I want.

Jathy changed everything. Just knowing I can have hair makes me feel better. To be able to not  automatically be the sick one in the room, to have people react to me as me and not a sick person, to look a little more like me. I am so grateful to my sister for this and to members of my family who pitched in on this quite expensive endeavor! Thank you, thank you, thank you.

I am healing a little more everyday. I am making progress in my diet, adding some food and doing okay. I am working on building my strength. I went to see Tricia for a little PT work and to help me get back on track. I’ll see her again next week. I am doing some gentle morning and evening yoga. I’m meditating most every day one or two times! I’m building up my time on the treadmill. I’m trying. But I can tell I’m still a bit anemic, my legs weigh a ton and I’m tired a good deal of the time. I am fighting anxiety left and right, up and down. I could really use some more energy to heal my body and mind.

I saw Dr. Standish yesterday and she was quite impressed with how I looked (I was wearing Jathy!). She agrees with Dr. Kaplan’s plan which is nice to hear, reinforcing. She gave me a Vitamin B shot to boost my red blood cells and give me a mood boost. I have to say I did not really feel much different, but I am hoping it is helping fight my anemia.

It is a beautiful day in Seattle today. A bit chilly but the sun is shining, the sky is blue with white puffy clouds. The kids are coming over tonight to cook dinner for us. Today will be a good day!

Sending love and gratitude to you all!

Janet

Good day my friends.
I am improving a bit everyday. It is a slow process, regaining my strength, stamina, appetite and allowing my stomach to heal and take in new low fiber~high protein foods each day. But I am on that road. It's somewhat familiar, actually. I think this is what the process has been after each stay in the hospital.

I've slept more in the past week than I can remember. I am NOT a napper as a rule (not to be confused with my husband...he can fall asleep in a nod, almost any time of day!). Up until yesterday there was no way to keep my eyes open in the afternoon. I was taking one or two hour naps each day. I knew it was helping my body to heal and I couldn't have fought it off if I tried. Yesterday I just rested, with no sleep and today we were on the go with appointments and only had time for a small rest. I'm trying to work with this body to give it what it needs but I also have to push it to build back my strength and stamina. That stay in the hospital just took all the wind out of my sail.

Today Mike and I went to see Dr. Kaplan so he could see how I was doing out of the hospital and make a new plan. Dr. Kaplan could see that I was improving. He was optimistic and hopeful, but not giddy about it, mind you. I asked (knowing the answer) if there was any way he could tell which had harmed my stomach, the taxol or the cyramza. Answer: no. Oh well. What we did learn is that it had started to work. And if we know something is working it is a hell of a lot more attractive than some other chemo that we have no idea about.

So the new plan: I have two weeks to build back my strength and stamina and get my stomach ready. In two weeks I'm going back on the taxol and cyramza, at a lower (maybe 1/2 dose) and every other week verses three weeks on, one week off. The plan is both taxol and cyramza every other week.

 Dr. Kaplan first suggested next week and I knew that was just too soon. I told him I'd contact him next week to let him know how I was doing but I need two weeks to gather up all the ingredients to go back in to this with eyes wide open. Lots of wherewithal, determination, persistence, positivity, strength, stamina, optimism, serenity, light and peace in my heart, not to mention a healthy gut! I need 2 weeks.

The sock/hat fairies continue to show up at just such the perfect times! You all have been so generous and thoughtful to me. I am so grateful for all the support of my Pathfinder families. You are dear to me and you really lift me up. The cards I am getting are so touching. Your kids (my kids!!) are so encouraging and their notes are  filled with love. I can't tell you how much all of this means to me.

We've also had plenty of friends bringing us food (well, really for Mike, my diet is too boring!). This has been so helpful as he has had plenty to do to take care of me. I think we're good for now though. We have 2 weeks and if we need more support at that time, we will give a little yelp out into this blogosphere!

Mike's toe is healing nicely, thank goodness! Next on his list is repairing some tears in his knee! That man has to stay strong to take care of me, and vice versa!

Sending love and peace and a special light to you all.
Sincerely
Janet

I'm home!
Thank goodness Dr. K did not leave me over another weekend! Yikes, I might have tried to make a break for it. 11 nights inpatient is really enough!

I feel like I've been knocked down to square one. Low energy, low stamina, very limited low fiber diet. And the weirdest thing is I've been taking a nap everyday the last few days. I am not a napper!
I guess I should say I was not a napper. I can't make it through the day without one these days!

Mike, Michael and Maggie were all on mid-winter break last week and spent so much time with me! I'm so appreciative of them giving up so much of their time. Betty and Eva spent plenty of time up there, as well. We always have lots of good laughs when we are all together, no matter where we are! And you know what they say about laughter...

I had many other visitors at the hospital as well as sock and cap and card deliveries that were delivered to our home and brought to me by Mike. I had a wall of cards from the kids and had many a nurse oogle all over them. Thank you for your messages of love and healing!

Mike and I will meet with Dr. Kaplan on Wednesday to discuss the future. I have no idea what is around the next bend. For now, it is all about healing, healing, healing.

So thank you all again for stickin' by our side. We need and appreciate your support!

Love and Courage
Janet

I've been wanting to get this written and posted for days.
Last Friday and Saturday I felt lousy as expected,day 3 and day 4.  But by Saturday night, with Mike limping around quite well, I started feeling feverish. Ended up with 100degree fever. 100.4 sends you straight to he hospital. In addition I've started to get my old pain back, a little more and more. Not as intense, but there it is. I called the doc on call and after a good discussion we agreed I would pack a bag and go straight in if the fever went higher or the pain was worse but at that point I was feeling better just talking to her.

We made it ok through Sunday, though I wasn't feeling well at all. Monday morning we went straight into see Dr. K. They took my blood, checked my vitals, checked me out an checked me in...the hospital, that is! That was a week ago today, still here!

I've had such low energy, lack of stamina, and inability to focus my attention, that I just couldn't get to this blog! But I am here now and must try to keep it short just to get through it, you know that is not a strength for me.

First I had a CT scan.  The news was good.  All tumors shrunk a bit, not a huge amount, but going in the right direction, with the exception of one lymph node that grew a bit.

Then I had an endoscopy. No cancer from my esophagus, all the way down to my duodenum! My esophagus, where I feel most of the pain, looks great, no problem.  My ulcer in the duodenum is healing nicely, there is scar tissue, the ulcer is much smaller, and ZERO coil sighting! It's in there or its gone.

The trouble is in my stomach, no cancer but the chemo beat the hell out of my stomach lining. It's called erosive gastropathy.  Initially I was eating small amounts of gut friendly food: kefir, yogurt, broth. Sometimes I might have pain, sometimes no. Then we all started  thinking back to September
2014 and what finally healed my ilium was no food at all.  So one night I was having a little yogurt and felt immediate acid reflux and that was my ticket to no food. I have to let my stomach lining heal. I have a neon yellow green bag of yum pumping nutrients into me. On occasional bag  of lipids and then this and that and the other.

There have been other misc tests and results, another Echo, a chest x-Ray, because I was having a hideous cough. But I will spare you all the details. Mike and Betty and the kids are up daily helping me get through this chapter of the fight.

Heal my stomach-eat food-then we'll talk next steps.
That is all I can muster for today.
Teachers and kids enjoy your week off!
Love to you all!
Xoxoxoxoxoxoxoox
Janet
PS oldest iPad around, so excise lack of edits, etc.

Good day my friends.

Today is day 3 of my cycle and I’ve been pancaked in Maggie’s bed listening to podcasts, meditating or just being. It is really about the most I was able to do all afternoon. But I missed my high energy day, yesterday, to post and I want to let you know why I was too busy to sit at this machine.

We had a turn of events here, I call this episode:

Mike’s Left Foot

Mike has had foot trouble for years. I will spare you the details and let him lay them out in his upcoming blog, or maybe he’ll do a podcast, not sure. But Saturday his second toe on his left foot (a really long toe, as long as my pinky finger, actually, I’ve compared them) was really heating up and bothering him. Red, puffy, sore, angry and sure enough at one point up crept that little red line of infection. OK, time to go. We called the doctor in our family, Carrie, who is not really a doctor but a medic for the Seattle Fire Department and told her he was going to urgent care. As Carrie is known to do she said, wait, let me see it. She came over quickly (she is conveniently living a block or so from us at this time) and said skip urgent care, go to the ER. So Mike took a solo trip to Swedish ER on Saturday evening, maybe 6 or 7 pm. It was not busy and for an ER visit not too bad. They gave him antibiotics and said if it gets worse come back and go see your doc on Monday.

It seemed to get better, the line was receding, that’s good. But on Monday Seattle got slammed with snow, 6-8 inches in our hilly West Seattle and when Mike called the doc in the morning, no docs had shown up! We hemmed and hawed and then suddenly it was clear to Mike that it was getting worse. Carrie came down again and off they went to the ER. She would make sure they did it right this time! So the ER was not so busy and they got into a room pretty quickly. They decided they needed to do a culture (Carrie was frustrated they had not done that Saturday) and start IV antibiotics. Over the course of the day they decided he needed to be admitted to continue the IV and the podiatrist that came in thought he might need some tissue removed. 

The ER was not busy but the hospital was slammed. There was no room in the inn. Mike was in the little ER room from maybe 10 or 11 in the morning until 8 at night! He felt lucky to have a room, he said there were others lined up in the hall! Luckily??? he had an unknown infection that makes him a bit of a biohazard so he needed to be isolated. 

Everyone agreed that the ER, the hospital in general was no place for me with my blood counts fluctuating. So we called and texted, a lot! The kids showed up around 5 or 6 and stuck with him until they finally had a room for him at Swedish Orthopedics Hospital, just a few elevators and sky bridges away. He got into his room about 9 I think…finally! All day stuck in those tiny ER rooms! Yikes! Then he found himself in one of the newer wings of the Swedish massive maze with a big room, a nice TV, a good view! Worth the wait, I’d say.

They’d taken an x-ray in the ER but in the middle of the night Mike got swooped back through those sky bridges and mazes for an MRI. On Tuesday the podiatrist, with new information and a little probing of the toe (gonna spare you the details here…you are welcome!), determined the infection had crept into the bone, but just the tip of the bone and they would need to amputate down to at least the knuckle. Dang! And I’m stuck at home in chemo land! 

On Tuesday morning Betty came up and gave me my booster shot. She watched a youtube video and Carrie gave her some tips (Carrie was working or would have happily given me my shot) and Betty did it like a champ! Yay for Nurse Betty! (And Terri, thank you for your offer, but we decided we could do it in house, but I so appreciate your offer!)

So on Wednesday, my blood count was good, I had an early appointment and all went quickly and smoothly and Dr. K cleared me to go see Mike. So after chemo I walked what seemed like 1/2 mile through the maze that is Swedish and found him with his mom and sister Lisa. It was great to be able to visit. Surgery was scheduled for 6:00 pm. I had to go home to take care of some business and so I left about 2:00. Michael came to pick me up, I was not quite ready and it took me awhile. We were really hoping to see him in pre-op but I’ll tell you, traffic Wednesday evening, in the dark, in the rain, it was just awful! But, it seems traffic from Ballard, where the surgeon was coming from was even worse! So we made it in time and got to visit with Mike in pre-op. He was in good spirits. We met podiatrist/surgeon 1, and the anesthesiologist. They were friendly, easy to talk to and eased our worries. Podiatrist/surgeon 2 was seriously stuck in traffic. 

They shooed Michael and me out to get Mike into surgery. Later we found out he came back out from the surgery room, cause of, you guessed it, traffic! Mike finally went under for his surgery about 7:00 and he said he woke in recovery at 7:25. Now that is some good, efficient surgery! He was up in his room with Michael, Maggie and I waiting by 8:00, and he was looking great! They used some kind of block to keep his foot pain free and gave him propofol which in my experience, and with Mike, too, you go out quick and come back quickly. Perfect. His foot was wrapped up well and he was able to use a walker with about 75% weight bearing. That’s pretty good! We stayed a bit too late (I was on my steroid high) and finally went home by 10:00.

Thursday morning, yesterday, is my day 2 when I have all that energy and get so much done. I started doing a few things around here with plans to go up to Mike around lunch time. About 9:30 he called and said he would be released in an hour or two! Yikes! I did what I had to do to get ready to go and headed up as soon as I could. When I got there the nurse was going over the last  of the paper work with him. I asked if we took the walker home and he held up his cute little shoe/boot and he is allowed to walk with as much weight bearing as he feels comfortable with. Wow! They don’t mess around! 

Mike is doing great now! He is spending most of the time on the couch with his foot raised, and that is what he should be doing. He just took his first pain pill of the day. So, he is clearly healing. He is going to a follow-up visit and even though it is day 4 for me, I’m going to bundle up somehow and go along. We’re a team, for better or worse.

This will be a lay low weekend for sure. A sick game of survival really, The kids will be around to support us and we have some friends lined up next week to bring us food.  So, survive, we will because of all the love and support we get from family and friends.

Sending love and peace to you all.
Janet