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.

Sloth Runner/Sloth Cancer

     I have had a difficult year and it has been hard to stay motivated to run this year.  I remember when I first started running I was a back of the packer, and then with some training I pushed my way forward to midpack.  Health issues have me steadily sliding to the back of the pack again.  First it was COVID, then when I was finally starting to feel better and like I could really go back to training I was plagued with a lingering fatigue.  I would have muscle aches and fatigue much longer after runs than normal.  When running I felt so slow and lumbering like I was fighting through syrup to move myself.  I thought maybe COVID was just lingering longer, or maybe my iron was low again and I needed to eat more spinach and meat.  Other than fatigue and continued pain from a stomach ulcer that I have had for 5 years now, I really feel pretty good.  There didn't seem to be any reason for the heavy fatigue after relatively short runs.

    I was scheduled for an endoscopy and biopsy of the stomach ulcer in March but COVID shut down all non essential procedures.  After several reschedules I was finally able to have the endoscopy in late July. The endoscopy revealed that my ulcer was not bacterial and would not be cured with antibiotics.  It also revealed a mass the size of a golf ball deep in my stomach lining which they tried to biopsy.  Due to the depth and awkward placement they were not able to get a good sample and the results were inconclusive. But it's shape did not present like typical stomach cancer so the doctor was fairly certain it was benign and most likely a "pancreatic rest".  To be safe another biopsy with ultrasound scope was ordered, sadly they were still unable to get a good sample but the second doctor who did the ultrasound scope agreed that it "looked" benign and agreed with the "pancreatic rest" theory.  This was late August and I was then sent for a CT scan to check for other signs of malignancy, "just to finally be sure that it is benign".  The results of the CT scan also thought that the mass in my stomach was benign, however they found several lesions in my liver that were worrying and scheduled a biopsy of my liver.  The biopsy of my liver happened the beginning of November and the results were not benign.  It was cancer we just didn't know how extensive yet.  More bloodwork was ordered and now I was sent to have a PET scan from nose to mid thigh to determine how extensive the cancer was, it didn't present as liver cancer and they felt it was spreading from somewhere else in the body.  My case was moved over to an "oncology" team and as they say "shit started to get real".

    I admit, I have been fairly anxious since they said the liver lesions were cancerous.  But I rallied my spirits and made plans to fight it.  With expectations of upcoming chemo treatments and possible surgeries I thought, "I've got this, It's just another type of marathon right?" It will be grueling and painful at times but worth the effort.  I have lots of family/friends and support and my loved ones will be there for me.  I shared the info with a few close friends and family, even though it felt surreal and I expected any day a call from the doctor saying they made a mistake and I'm actually fine.  I even made plans for when I lost my hair to borrow wildly colorful wigs from Leanna, and more normal wigs from Dawn.  

    On this past Sunday the results from my PET scan arrived in my patient portal.  I was scheduled to meet with the oncologist on Tuesday to go over the results.  Looking back I would not advise reading the results of such a scan on your own.  Even with my medical training and background I am not an oncologists and I know just enough to know how much I don't know about what is surgically and medically possible.  I would advise anyone to wait until your doctor can explain the results to you.  Do not make assumptions or self diagnose or search Web MD for answers.  From what I could understand of the scan results the Tumor in my stomach was very active and malignant and the probable source of the liver lesions.  The liver cancer was much more extensive than what showed on the CT scan and there were signs of higher "activity" in other areas.  On the good side there was no "activity" in my lymph nodes or bones.  OK, so scarier and definitely not good but  I was still optimistic, in shock but optimistic that with surgery and chemo and possibly radiation I can beat this.  I was suddenly grateful for my COVID lock down weight gain.  I assumed I would need some kind of gastric bypass and hey now I had the extra weight to keep me from losing too much.

    Tuesday December the 8th I met with my oncologist, still feeling surreal and disbelieving but ready for a game plan and to start fighting the cancer.  Bring on the chemo, the surgeries and the radiation lets destroy this stuff!  So I was completely stunned to hear the words "Stage 4" and "Terminal".  I had to ask the doctor to repeat herself twice as I simply could not even understand what I was hearing.  The cancer is "inoperable" and "extensive" and "not curable". The doctor went on to explain that the plan was to give me "the highest quality of life for as long as they could."  There would be no radiation treatment and my appointments with the radiation doctor were being cancelled.  There would be no chemo infusions as that would drastically reduce my quality of life and not work to kill this type of cancer. I had a rare type of stomach "Gist" cancer that is very slow to spread and does not present as a cancer.  The most common form of stomach cancer is very aggressive and spreads too fast to catch and most people die within weeks of knowing they have it.  I am lucky, I have the sloth cancer and they have "High Hopes" of slowing and even shrinking the cancer with the chemo pills.  They even have a particular drug in mind that usually works very well with my type of cancer and many people live for several years just taking one pill a day with very few side effects.  They are confident once they determine which drug to use that they can give me several more years of a relatively high quality life.  And new cancer drugs are being developed all the time so there is still some hope that they will find something later on that can give me even more time.  At this point they are hopeful that I could have up to 10 or more years left.  

    So I am blessed!  I am blessed with time my friends, time to continue to help people heal and feel better with my work as a PTA.  Time to travel and see friends and family and have many more adventures on the trail.  Right now I am finding comfort in these thoughts.  I am also still shocked and in the disbelief phase, so I understand I may later hit an angry phase where I will need to rant and scream at the world.  But for now, at this point I am grateful, so very grateful to have time.  Grateful to have a sloth cancer that wants to take it's time and let's me enjoy life for a little while longer.

    Back of the pack runners are a tough and determined bunch.  They are pushing through and often working to stay positive and optimistic in a sport that praises and lauds speed.  Often they call themselves sloth or turtle runners.  It's about the journey and enjoying the time with friends outdoors and not the speed you are capable of going.  So for the foreseeable future I have rejoined the sloth running group, but I will be in great company and continue to find my joy on the trails.

Go team sloth! Woop Woop!

Was it COVID?

The answer is I don't really know, but we have been treating it as if I had.  Here's the time line of my symptoms and experience:

April 4th:  I woke up feeling fine but could no longer smell anything and had much reduced ability to taste.  Otherwise  I felt just fine and did some painting and chores like normal.   I felt a little more tired than usual in the evening, which I assumed was from painting and chores. My temperature was only slightly higher than normal  before bed.

The next couple days: Continued to have no sense of smell.  Increasing bouts of fatigue. Still slightly elevated temp.  No other symptoms.

Monday April 7th - Friday April 10th: Slight temp continued, Fatigue increased drastically and now fatigue bouts also had strange body pains and aches at times bad enough that I would just sit and rock. I just felt like something was wrong, really wrong and I couldn't really describe what it was. Couldn't stand for even light activities for longer than an hour without fatigue and pain starting.  Thursday and Friday started having tightness in chest and dull pain in chest with deep breathing.  There were bouts of feeling normal that would last maybe an hour then fatigue would hit again.  Started monitoring SPO2 which would drop to 88%.  Used short bouts of activity and deep breathing exercises to bring readings up to 94%, sometimes I could get it as high as 97%.  Normal readings should be 98 - 100%.

Sat 11th and Sun 12th: Started to have longer periods of feeling better, particularly in the morning could handle 2 - 2.5 hours of light activity before fatigue and pain.  Chest continued to ache at times.  continued to have bouts of low SPO2 readings.

Monday 13: In the Morning I felt great, completely normal.  Temperature was back down to my normal. State Health Department changed testing policy that anyone with symptoms could get tested for Covid. Contacted Health department and arrange for getting a test on Tuesday.  That afternoon my Temp was again slightly higher than normal and fatigue and body aches were back.

Tuesday 14th Temp normal in the morning and I felt pretty good for most of the morning. Steve drove me to the drive through Covid testing in Howell which was a back alley behind an Urgent Care clinic.  The doctor stepped out of the clinic and tested me in my car, my SPO2 was low, my Temp slightly elevated. After listening to my symptoms he said he was confident that I had a lighter version of Covid but the test has issues with false negatives and I should continue to self isolate and he wanted me to make an appointment with a doctor at Beaumont who had been working with Covid patients.  Steve took me home and fatigue and body aches returned for the day. An appointment was made for a teleconference with the doctor from Beaumont who when consulted agreed with the clinic physician that I had a lighter version of Covid and my symptoms were similar the patients that she saw who were able to recover without intervention.  She prescribed a Z-pack as a preventative for secondary infections, said to continue to self isolate and continued with increased rest and fluids and SPO2 monitoring as I had been.  If my symptoms increased or if I was not able to raise my SPO2 to contact her again.  Otherwise she felt I would be fine and could return to normal activity after 14 days symptom free.

For the rest of that week I continued to improve  with longer and longer bouts of "feeling fine and back to normal"  If I did too much activity at once I would be hit with another bout of fatigue and body aches.  Too much activity seemed to be standing for longer than a couple hours to cook or clean.  By Friday My SPO2 was staying at 95% or greater and I no longer had tightness  or chest pain.  And The doctor texted me a picture of the negative results of my Covid test.  By the weekend I could walk a couple miles slowly with stops and rest breaks around my yard.

The rest of my days have kinda blended together with gradually increasing stamina and I have mostly returned to normal activity.  The first time I tried running my muscles were very sore.  I'm having increased cramping at night on days that I run and my calves especially cramp up when i get up after a long period of sitting on the day after I have run.  So I have tried to alternate days of running with days of walking.

This past Monday the 27th I spent all day raking and weeding the gardens around the house, I took 20 - 30 min breaks every couple hours.  It still wiped me out that evening I could barely move and the body aches seemed to be back.  Tuesday again for the morning I was fine and my normal self but in the afternoon I crashed and couldn't get up and had to doze on the couch.  So I'm probably not ready for a full day of energy exertion yet.  It's probably a good thing for me that I have had this enforced rest period from not having a job and a stay at home order.

So did I have COVID?  I don't know.  2 doctors  are fairly confident that I did.  The test result was negative, which could be false.  I know I have never been sick like this before.  it was not like the flu, nor was it like a cold and the body aches were strange and almost nerve like pain referring down my arms and into my fingers or down my legs and into my toes.  I have never had an illness where I completely lost my sense of smell with no congestion or sinus drainage.  Losing your smell might seem like a small thing but I found it very disturbing and scary.

So for everybody's protection, I continue to social distance and wear a mask when out  in public.  I'm still not sure if I should go to a grocery store, but I have been to parks that are easier to distance at

I don't think I will know unless there is an accurate antibody test.  And if there is a vaccine that comes out for it, I will still want to be vaccinated.

Stay safe, stay well, and keep distancing my friends.

-Jennifer/Jenna