Heavy skies heavy heart, Brighter skies lifted spirits

Heavy skies and heart

January gloom seeps in

Brighter skies lift heart

I spent most of January feeling "under the hanging sword".  I was dissapointed in December and have been anxious and worried that the lower dose of chemo would not be enough to control the cancer.  The chemo team made it clear that if that was the case they would not be able to go back to the full dose and I would no longer be able to continue the chemo trial.  

I know it is a useless activity to let what ifs spin through my head, but I couldn't help feeling that I should have "toughed it out".  I felt like a complainer about the hand and foot pain and fatigue.  Which were really only part of the reason they lowered the dose.  Not being able to control my high phosphorus was a big factor in the decision.

So if I was snappish at times or more pessimistic, I apologize.  It was a gloomy anxious month for me.  

This morning I started my day with my usual yoga with Adriene but chose to do a cozy, self care more relaxed episode.  It's a long day at the NIH and I didn't want to start it with a tough workout.  I think this helped to set the mood for the day.  A reminder to be kind to myself and those around me.

I have often mentioned the caring and empathetic staff at the NIH and how amazingly supportive everyone is.  I am not sure I have mentioned how supportive and caring most of the patients are as well.  Honestly we are most of us there, being treated for things that can't be treated anywhere else.  We are blessed and being given our last hope.  How could we not be glowing with gratitude for one more day, or month, or week, or year.  There was the time I spotted someone with a Boston marathon jacket sitting outside the phlebotomy lab.  It sparked a quick conversation of running trail verses road and training. His parting words were enjoy your next race!  Today while sitting and drinking the contrast die for the CT scan a patient who had finished and was headed out leaned down to me and said "Good luck dear!".  I could almost cry from the offer of compassion from another going through their own struggles. So many conversations and stories from people around the United States and the world.  Sometimes they are new patients, sometimes they have been getting treatment for years there.  Most people are actually fairly cheerful and enjoy talking about nearby places to eat and other inconsequentials.  Some enjoy trading stories and with those stories they are often mostly of hope.  Hope that they did not have before.  

After today's CT scan we went up to wait for the results of my tests and appointment with the chemo research team.  And as we ate some packed sandwiches I found myself no longer worried.  No longer able to feel anxiety.  Even when I started to gnaw at that anxiety like the comforting bone it has been all month, I found myself feeling warm and calm and at peace.  I just couldn't feel worried.  Maybe it was running into my surgeon in the hallway and being reassured that I had a great surgeon who was ready to take over when I needed him.  Maybe it was having the scan over and results coming soon.  Or just the general atmosphere of hope that I find at the NIH.

As things happen the news was good, the cancer is still stable with the lower dose.  And furthermore the study was supposed to end after 2 years, and now was opened up to be continued indefinitely by any patient having positive results.  Once more I beat the odds and can make some plans for travel, seeing friends, seeing shows.  I do not have to worry about trying to keep my schedule open for surgery and recovery. I also get to enjoy the continued increased energy and hopefully a return to some running and races.  Even the sun came out and there were blue skies when I left the clinic.  The weather was warm and spring like and we could walk to dinner without jackets.

Wishing you more sunny skies than grey my friends.  May you find time to enjoy the things that make life worth living.

Fox Dream

Note: I started this blog post last summer when I was recovering form surgery and never finished it. But I would like to share the still remembered dream.

I had a dream several weeks back that was one of my very vivid kind of dreams where I can feel, and taste and touch things and remember it for weeks after.  

In the dream I have a little yellow car and I share it with other people so I was parking it and picking up all of my scattered possessions and stuffing them in a duffle bag which I left on a stack of other peoples duffle bags for when I was using the car again.  I was late for class which was in a huge brick and stone castle like building and up several flights of stairs.  When I finally got to class it was a final assessment group project and everyone was already partnered up and I had to try to find and solve all of the clues on my own.  The project involved various clues scattered about the classroom, and you had to solve the murder mystery.  I sat down at my desk and there was a gold plate and serving set like at a holiday meal.  I dropped my papers on the floor and after I picked them up and sat up again there was a gift box on the plate and my teacher was sitting across from me smiling slightly.  She had ice blue eyes and steel grey hair in a short bob cut and she nodded and gestured to the gift.  It was a dark blue wrapping paper with trees on it and a silver ribbon.  I opened the box to find a carved silver figure of a fox with several kits climbing around her.  looking at the fox figurine it was looking up with a bright knowing and serious expression.  It felt heavy in my palm and I could feel the etchings of the carving and I remember being very touched at the thoughtfulness of the gift.  Then I woke up.

 I have shared this dream with several people.  After thinking it over and many discussions with friends, family, and therapist, I think this is the best interpretation I have heard; The car symbolizes my stay in the hospital with it being a shared space that I had to vacate and prepare for the next patient.  The school with groups I was too late to join symbolizes all the events I felt like I was missing out on and my watching friends move on and have fun without me as I was recovering from surgery and going through treatment.    And the fox that was carved resting with her kits symbolized the gift of time that I had been given for my recovery.  

Someone even suggested that the time of rest was a blessing not a curse and that I was fortunate to be able to take the time I needed to heal.  Being patient with myself and accepting that "gift" might make the slow, isolated time more bearable.  

It's funny looking back on that time when I thought all the cancer was gone and that the goal was to heal from surgery and get back to normal someday.  Then last September the cancer wasn't gone.  It has taken me several months, and I am still trying to come to terms with this just being my new normal.  Dealing with life on chemo and forced retirement from health issues is hard. I still remember the gift of the fox.  Now I have more time and energy for family and can plan more time with them than I could have before when I was working.  

Cancer isn't the way I would have chosen early retirement, I am not recommending it at all.  I miss my work and still struggle with an identity crisis of self worth tied up in productivity. Unfortunately every time I think I am feeling pretty good and could go back to work, I get sick again, or have severe side effects from the chemo that require more doctors visits and rest and sometime hospital stays.  I can't imagine a job that would allow the kind of intermittent work I would be able to do without knowing if tomorrow I would have to call in sick from severe side effects.

I have started to volunteer at the animal shelter.  There is no heavy work just playing with dogs and cats and walking the dogs I feel strong enough to handle.  No set schedule.  Show up and spend time as much or as little as I would like. Feeling sick? sudden doctors appointment?  No problem.  The bonus is I get to play with puppies and kittens.  Steve has some concern about my wanting to bring more home.  Luckily the two we have are so much work that I really don't want any more pets at this time.

So in a way I am like that fox carving with the kits climbing over her, only it's puppies and kittens in my case.  

If you are in need of a new companion, check out the animals looking for their furever home at Livingston Animal Shelter.  They get a lot of love at this shelter and the volunteers are great at working on training and socializing.

https:/www.livgov.com/animalshelter

Reaching the other side

 

For those who have been following me on Caring Bridge, this is just a more detailed update.  Here I am almost three months after surgery and it has felt like a lifetime.  The up and downs of recovery from major surgery were exacerbated by fighting an infection.  We had so many more trips back and forth to Maryland than was expected, not to mention the second hospital stay due to infection.  I have spent 3 months just focused on "What next", getting through each day and trying to do as much as I can for myself before the "tired stick" hit and I would need to nap again.

Tuesday I was waiting for my CT appointment and hanging out in the courtyard at NIH with Steve.  The very same courtyard I could see from my room after surgery.  I remember looking out at budding trees and hoping there would be a time that I could sit and enjoy the peace and the trees and not be in pain.  Three months later I have made it.  

The doctor took the last drain out and took me off from antibiotics and I can tell you the feeling of freedom after was euphoric!  I cannot express just how limiting having the drain and pick line have been, from the need to have assistance with wrapping and covering everything before I shower.  To the need to watch the drain didn't catch on things, like cupboard handles and door nobs, and the pain it caused when it did catch and pull at the stitches holding it in. I couldn't bend over and stand up without it pulling in and out and it hurt like crazy when I lay flat then got back up.  Finally having the drain out and able to move has been so freeing.  I'm walking better and able to put my own shoes on and do chores that involve bending down.  I can start doing gentle yoga again!

Now I just need to work on strength and energy levels, but I have a lot of hope that that will start improving more now the infection is gone.  I have already improved a great deal with how far I can walk before needing a rest, and it was very exciting to be able to walk with Steve to get dinner instead of sleeping at the hotel while he ran to get food.  

Here I am looking up at the room I was looking down from 3 months ago.  I have made it to the other side!  For the first time since this cancer nightmare started in November I feel I can start focusing on life and not just myself.  I can plan for future vacations, and going back to work, and a return to living for more than just fighting through cancer surgery and recovery.  

After flying home Wednesday I had High hopes of joining the Running Lab crew for the Global Running day event and walking a bit with friends.  Unfortunately after 3 days of walking through airports, the hospital for various appointments and downtown Bethesda my energy ran out and I just needed to sleep.  So I need to be patient with my still healing body and accept that I won't always have the energy I need to do everything I want.  I just need to take and rejoice in the victories I have.  See you in the woods my friends.  My next goal is to hike the Kenoshia trail at Brighon rec.  As always I will try to share pictures of my peace and joy on the trail and in life.

Michigan Cherry Walnut Pancakes

 

No I am not planning on starting a food blog.  I just really love big breakfasts on the weekends and have been in search of a good pancake recipe.  I ran across a basic pancake recipe that works really well and I have been playing and having my way with it each weekend.  It started with changing out the milk and butter for dairy free margarine and Almond milk.  Then I added some orange extract and zest and it was a simple and lovely basic pancake.  But I can never leave anything simple and Steve had bought some traverse city dried cherries, so of course I came up with my version of a cherry walnut pancake.  On the whole I am pretty happy with it.

Here is the original recipe for "Best Ever Homemade Pancakes" by Grace and Good Eats: https://www.graceandgoodeats.com/best-ever-pancake-recipe/

And here is my non dairy Michigan Cherry Walnut Pancake recipe: 

Dry Ingredients:

- 3 Cups All purpose flour,  - 7 teaspoons baking powder, 1 teaspoon salt (I used slightly less than a tsp), -1/2 Cup of sugar

Wet Ingredients:

- 6 TBS margerine (I use earth balance) melted, 2 1/2 Cups of Vanilla Almond Milk, 1 Teaspoon Vanilla extract, 1 teaspoon lemon extract, - 2 eggs 

Fruit and Nuts:

- 1 1/2 Cups dried cherries, 1 Cup of finely chopped walnuts, 2 TBS lemon zest 

Directions:

1. Melt Margarine and set aside to cool.

2.Sift or whisk together all dry ingredients in medium bowl. Create a well in the center.

3.Whisk all wet ingredients together and pour into dry, whisk together but do not over mix.  There will still be some lumps.

4. Stir in dried cherries, ground walnuts and lemon zest.

5. Heat ungreased skillet on medium high heat, when water sprinkled on sizzles it is hot enough.  Pour roughly 1/4 cup of batter and cook till edges are dry and bubbles pop creating holes in top, flip and cook 2-3 min more till other side is golden.  

Now feel free to have your way with this recipe, anyone not allergic to dairy could use buttermilk or whole milk and actual butter instead of margarine.  This recipe does turn out very lemony and the tart cherries are more of an accent, you could use less lemon zest and try cherry extract instead of lemon for more cherry flavor. 

I did try to make a Michigan shaped pancakes and here is my sad result.  

My lack of skills with food photography and the fact  that I rarely write my recipes down, make it unlikely I will start a food blog.  However I hope that someone may enjoy these pancakes as much as Steve and I did this morning.

Cheers!

- Jenna

A New Dawn

This is the view from my back deck as the sun rose over glistening snow there were a few scattered large glittering flakes that softy fell to the ground.  It was stillness and magic.  That glimmer of magic was probably really formed from the glimmer of hope my doctor gave me Thursday night.  He had news that a surgeon from the NIH (National Institute of Health) had completely reviewed my case and wanted to talk with me, he needed my permission to share my contact info which of course I gave.  Now I had been told back in December by both my primary and my second opinion oncologist that surgery was not an option so I did not want to hope too much.  

Friday Morning I had a conference call with Dr. Blakely and his 2 nurses.  He is a specialists in gastric restructuring surgery.  It will involve some extensive surgery with removal and resectioning large portions of my liver and a distal gastric bypass. But his goal is to remove most and possibly all of the cancer.  I was stunned!  Even if he is unable to remove all of it I have such a slow moving cancer that removing most of it will give me back some years of life.  Possibly a decade or more, that would give time for them to find a drug that works on my version of Wild type GIST tumor.  He has ordered more imaging through my doctor and will then conference with me on more details and specifics of the surgery.

Short term I will be going to Bethesda Maryland for the surgery.  I will need to stay in the Hospital 2 weeks.  Possibly more if any complications. Then 6 -8 weeks of recovery where I will not be able to work.  With the gastric bypass there will need to be some nutrition changes and I will need to consult with a nutritionists for the dietary changes.  Physical activity I can go back to walking/hiking in 2-3 months.  I won't be able to paddle or run or do activities with abdominal twisting for a while longer, though I will be able to do them again after full recovery.

The further good news is since this is experimental surgery through the National Institute of Health, my procedure is completely covered. I thank you greatly for this boon.  There will be some travel costs and Steve will need to stay in a hotel while we are out there but it is small potatoes compared with surgery and hospital fees.

So cheers my friends!  Here is me with a champagne glass toasting a new dawn.  A new possibility.  Here is me daring to hope again, and still I will savor each day and be grateful for each moment I can continue to marvel and enjoy this big beautiful world we live in and all of my family and friends.  Thank you to all my family and friends for your kind words of support and love and prayers.

 

Chasing My Sunset

 

    New Years Eve I arrived home from work with just enough time to grab Steve and the dogs and get to Brighton Rec in time to watch the sun set over the lake.  I wanted so badly to watch the sunset to say goodbye to this crazy year.  We arrived just in time to run/walk along the path until I could get a clear shot of the lake and the brilliant sunset reflected on the mostly clear ice.  

    Much of my life I feel has been "rushing towards an event",  especially when the kids were young and we always had at least 10 events a week.  I was always overbooking myself, I didn't want to miss anything, I wanted to try everything I could that sounded fun and interesting.  My friend Shalla even cross stitched me a t-shirt with a Large "NO" and then a list of ludicrous excuses why I was unavailable to do something, like "I have to shampoo my cat" or "that's my totem pole carving class night".  I think I have passed it on to another friend who needs those excuses now.

  

    To update on current events, I saw Dr. Mackler yesterday.  I went in expecting the final lab results of the DNA testing of my gist cancer and expecting to be put on Gleevec, with just the amount they were going to use being in question.  I had a great talk with the social work nurse last week about how many patients she personally knows who do well on Gleevec and she even gave me a good perspective change.  She said not to focus on the terminal part of things as I go forward.  She says I am a long way from that stage and it helps to instead treat the cancer like a chronic disease.  Lots of people have chronic diseases that they have to work through and take medicine with side effects, while they continue to live their best life.  This thought really cheered me up and I felt less sad and much improved in spirits after talking with her. 

     However the doctor did not have the expected news, nor could he offer much in the way of treatment options.  He went into great detail about the genetic mutations that cause gist cancer and how the two most common mutations both do well with the Gleevec helping to prolong life.  I unfortunately have the very rare third mutation (Steve says he knew I was 1 in a million), that does not respond to the Gleevec and is so rare that there is no drug or treatment for it.  The Dr. said the best two options I have are to try a second tier cancer drug that may slow it down, but will have harsher side effects. Or Dr Mackler had consulted with my Gist oncologist at Karmanos, and after looking into what research might be going on for my cancer, an oncologist with the National Cancer Institute in Washington DC has been found to be looking into treatments for it.  With my permission he is forwarding all of my case information to the NCI and they will review my case and decide if I am a candidate for study.  This process may take awhile and Dr. Mackler is willing to give them 4 weeks to decide before trying one of the second tier treatments.  Once I start treatment with Dr. Mackler I will no longer be a candidate for research as the drugs I will be on will contaminate the study findings.

    So we wait, again....I have no good answers.  I have tried to stay positive, and I have tried to put my best foot forward, but oh my friends it is so hard when they don't give you anything to fight with.  Everything I read on Cancer is about fighting it and working through the pain and sickness and discomfort of chemo and radiation and surgery.  I have nothing, I have the bare glimmer of hope that maybe there might be something that will slow it down.  I am sinking in the quicksand and they have told me to wait and just keep living as best I can like normal.

 

    So I am chasing my own sunset my friends, I live for this moment, for this eye-blink of time.  I can no longer count on years.  Let's just focus on this one year and what I want to see, accomplish,  and work towards in this year.  Love to all my family and friends, I will continue to Live, Love, and Learn with the time I have left.

Jenna And The Troublmaker

 Today's blog is brought to you by Steve Hoyer, who is bravely taking on the task of updating people when I am feeling to overwhelmed, or tired to do so.  Thank you Steve for taking care of me and keeping others informed of developments.

We saw a GI cancer specialist today. Dr. Philip of Karmanos Cancer Center.  He reviewed all of her test results and PET scan 3D imaging. His opinion, with significant weight of years and experience treating these kinds of cancers, is that her doctor at St. Joe is on the right track at this time. Because the cancer is both large and in a bad position it is inoperable. It has also spread throughout all lobes of the liver. There are more than 20 lesions, some of significant size (one is over 5 cm long). There are also signs throughout the other organs that it may be trying to establish itself in other places.

Surgery only fixes one spot. Even if they did surgery to remove her whole stomach, the cancer would still be in her liver and trying to get into other places.

The treatment for now, needs to be the drug therapy. This way, the treatment is delivered to all of her organs and can start fighting the cancer everywhere, all at once. 

If Jen responds *very exceptionally well* to the drug therapy then, to quote Dr. Philip, "Maybe, maybe maybe, there may be a case to seek surgery in the future. I said maybe three times there." Even with that surgery, because of the perfusion of cancer, it would still likely be to extend life, not cure the disease. We are not there at this time. Again, to quote Dr. Philip, "No surgeon will operate right now."

Regarding the drug therapy, for this, we will be seeking treatment with Dr. Mackler at St. Joe. He has an office in Brighton as well as Ann Arbor and it will make appointments easier. We've authorized the sharing of information between these two doctors and have been invited to consult with Dr. Philip at Karmanos at any time as treatment progresses.

As much as we want a magic pill or miracle surgery for Jennifer, and no one wants it more than me (except, I suppose, for Jennifer herself), it is not available at this time, regardless of what WebMD says.