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