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Entry #16 - Health Update

7/8/2016

15 Comments

 
Health Update:

As many of you know I have been on a new trial through the breast cancer team at UCSF over the last six weeks. The phase I trial has been targeted at attacking my HER2 mutation with three drugs and with one general chemotherapy to kill everything else in case the targeted ones do not work. I get three of them infused via IV once a week and one chemo I take in pill form every day.

I have previously mentioned my CEA Protein Marker scores which is one data point in terms of how my tumor is doing. Over the last few weeks my CEA marker has gotten quite high, and it made me and the doctors curious about what my scan was going to look like on 6.28.16. The CEA is currently at 336 after hitting a high of 475 two weeks ago. 

The scan results came back very positive, meaning that my cancer (tumor) is decreasing in size--or in my case the “poorly differentiated” cloudy mess in my lungs has thinned out and appears to be on a significant decline. This is amazing news and something we are all very happy and excited about. Basically this means the targeted drugs are working and we are making great progress in the first six weeks. It does not explain why the CEA marker is so high but the scan is more important than the CEA marker…so we will take the results we have gotten! 

I will stay on the current treatment plan for at least another six weeks and then we will take another CT Scan and further assess.

I have been feeling better in terms of my lungs and breathing, and the results obviously back up how I am feeling.  The challenging part of this trial are the side effects of these various chemo’s. As I had previously mentioned, the biggest side effect is diarrhea and the inability to manage it. When you are putting these drugs into your body they have numerous effects and unfortunately this is one of them. This particular cocktail does not let food and your normal digestion process operate as it was built.

I am trying to figure this out with pills, more pills, eating, drinking, and positive thinking. There is one other person on this trial so far and he is two months ahead of me and he has faced the same challenges and is still searching for some answers. They told me he is using a tincture of Opium to help control it along with many other things.  I am not ready to go there, but we shall see how things evolve. So for now, I am getting more aggressive with the pills (I really don’t like taking pills so this is a tough one for me)…I just want my body to fix itself…which has always been my situation…but I am learning with these drugs you have to fight the fight with weapons that match up to the enemy!

One funny story, if you keep this formula in mind: time + tragedy = humor. When this first started a few weeks back I was having some challenges, so I went to take one of the pills that will block up your system (Imodium).  I was surprised several hours later when the situation was even worse.  When I went back and looked at the pills, I had mistakenly taken the pill for constipation…so I just added fuel to the fire without even knowing it! I will spare you all the details but I did find the situation fraught with humor and enjoyed getting some good laughter out of it!

During my latest scan, in addition to the great news, they found some cancer in my back. The official term is L2 vertebral body sclerotic lesion. Basically on my L2 vertebrae. Yesterday I received a shot to strengthen my bones. I guess this is typical with cancer…some of the cancer gets in the blood stream and then gets carried around the body to various spots. I am told the bone strengthener should help mitigate any risks and I will be doing some more research on this topic in the coming weeks.

Reflections:

As I have mentioned this cancer journey is like whack a mole! You make progress in one area and then boom…a new surprise is around the corner.  Staying flexible is key, and knowing that life will bring you new and interesting surprises every day is part of what makes life exciting and not boring.  

I am guessing that for most of you, there is very little left that could surprise you. The human condition is such that we/you just can’t predict who would be a good political leader, what a great neighbor will do, what your brothers or sisters in another country might do to you, or how the financial markets will react in any given situation. I have always said that consistency is one of the greatest qualities - the ability to have faith in something/someone in terms of the results that they will produce based upon past experience. 

As part of this clinical trial I am quickly learning that in the trial phase of things consistency is something they are trying to figure out - how to treat the disease and provide an experience for the patient that is consistently manageable and thus could be taken to a broader audience. So the experiment will continue and hopefully we will learn how to make the result and process both work together for a great outcome.

As I continue on the path forward, the mind is something I continue to wonder about. What is the power of the mind and how much do we control in terms of experiencing joy and pain? There are many stories of people overcoming great pain because they believed in the outcome of what they were doing such that it allowed them to carry on against all odds. When faced with physical challenges, the mind can carry us forward in such a way that the challenges are minimal and easier to deal with.

This whole topic of the “why within” that I wrote about a few weeks back again pops into my mind as I play out the future. I have been amazed with people that always were able to make it on a vacation and yet had trouble at times getting to work. Were they sick at those times or did they convince themselves they were sick? Did they will themselves to not be sick knowing they had a vacation or an adventure ahead of them?

The trick for me is to believe and act like I am getting cured but not over do it such that I don’t allow my body to heal.  That is a fine line and I am trying to figure out how to walk that tight rope.  I can feel my interest in being more productive, in getting my mind wrapped into engaging projects, and in being able to serve other folks to the extent I am capable. Another tricky element is acknowledging and being honest about what you can and cannot do even though in your mind you can’t imagine not doing something you have always done. 

I hope you are all enjoying summer and spending quality time with your loved ones! I so appreciate all the love and support from all of you and am humbled reading your comments and just knowing that you think about me and send me positive feelings and thoughts.

Make it a great day!

Greg

Below is a nice poem in which Longfellow compares the arrow to life, and the songs are compared to feelings. Even though songs (feelings) are unseen, they are still real. 

The Arrow and the Song
By Henry Wadsworth Longfellow 

I shot an arrow into the air,
It fell to earth, I knew not where;
For, so swiftly it flew, the sight
Could not follow it in its flight.

I breathed a song into the air,
It fell to earth, I knew not where;
For who has sight so keen and strong,
That it can follow the flight of song?

Long, long afterward, in an oak
I found the arrow, still unbroke;
And the song, from beginning to end,
I found again in the heart of a friend.

15 Comments
Stacy
7/8/2016 08:08:27 am

Hi Greg, Thinking of you and sending you love. xoStacy

Reply
Naomi
7/8/2016 08:16:09 am

Greg- I heard you were kicking some cross-fit butt a few weeks back. I have a little birdie (by the name of Kristin Murphy) that keeps me updated. Keep fighting the fight, you are amazing!
Much love- Naomi, Felix and the crazy kiddos

Reply
lisa branson
7/8/2016 09:29:32 am

Greg
Wanted you to know your in my thoughts today! I send you hugs, energy and compassion. May you feel these from me with each breath you take today. Much love, Lisa

Reply
Jennifer Johnson
7/8/2016 02:17:52 pm

Greg,
I am sitting in Maui reading this and am thinking of you each day. Your courage, strength and faith continue to inspire me. Sending you Hawaiian sunsets and prayers!
Jenn

Reply
Karen Marriott
7/9/2016 06:32:11 am

Life is always changing and it's how we respond to that change which determines our happiness. When we are younger and even until we begin really living that we are surprised and startled by change. But as we expect those changes, even daily, there becomes a rythmn to it and an understanding that it's part of our path and it's a way to keep learning and connecting us to others. Our experiences and shared experiences add depth and beauty to our lives and as we share them, as you have Greg, they build stronger friendships because we have gone deeper- something you've always been good at "go deep fast" ;)

Sending positive vibes from the mountains of Utah and the shores of Winnipesaukee. Much love and friendship- Karen

Reply
Molly Graessle
7/9/2016 11:00:21 am

Always thinking of you Greg. 💛 Wonderful to be together on the beach this week for the competitions and at PP on the 4th of July.

The "fine line" of what we can and cannot do and walking that tight rope resonates with me as even with much smaller issues I am learning the hard lesson that life changes, we change - and what we always could do- and we could do Anything😊😊- changes too.

You are always inspiring and we try to live up to your positive and hopeful attitude and welcoming, serving ways of living.

Sending Graessle love every day❤️

Reply
cindy jouras
7/9/2016 03:07:09 pm

Hi FAMILY!!
Greg, it was SO nice to have a minute with you at the Jay race the other day! When I read your thoughts, it is weirdly easy to put you into a mental pocket of "magical people with amazing powers"... and SO seeing you in your SELF brings me back to a flatline normal that I appreciate... because there you are, appearing next to me at Capitola Beach as always...I just admire your ability to get the hell on with it all and manage to strengthen us as you work through all of this stuff...SO, long story short, your words and your thought process are intriguing and interesting and inspiring. But most of all they are exactly what I would expect from you and I love it so much!! Hugs to all and know that Clan Jouras is wearing the bracelets!!!

Reply
Cousin Lori
7/11/2016 09:00:02 pm

Greg - thank you for sharing your journey and reflections. You are so inspiring, and I'm grateful for all that I'm learning from you! Keep up the positive vibes! xoxo

Reply
Merivale
7/14/2016 08:13:41 pm

Hey Bishop! Just wanted to let you know that you and your awesome family are in our thoughts and prayers! Abe and I think of you guys often and are still inspired by your strength and spirit!! We left our hearts in Santa Cruz and are still trying to figure out how we can become the Madsens when we grow up. Take care!
Love,
the Gardners

Reply
Erin O'Hara
7/15/2016 06:08:02 pm

Hey Greg! Loved reading this post. I have been thinking about you lots. Kyle and I just went on a 200+ mile backpacking trip, so lots and lots of time to think, as you might imagine!

One thing that struck me from this post was your hesitance to try the opium tincture. I have had several patients with this side effect you're experiencing, who have found that very useful. I know the word 'opium' may carry a little bit of worry, but the dose this is used at is specifically for diarrhea, not pain management. Some other medications you might want to discuss with your doctor include: lomotil, octreotide, and sandostatin. All of these meds are things I commonly see prescribed and given to patients, and usually offer some relief!

Much much much much love!
-Erin

Reply
Jewell
7/19/2016 01:22:34 pm

Hi Greg, I'm been watching your journey since last fall. It's so like you to help friends and family
learn from your experience. I have! Thank you. I'm thinking about you and sending you positive thoughts and energy...Keep up the good fight!

Reply
Andrea Blake
7/24/2016 06:12:30 pm

Pete and Haruyo visited last week with Jeff and his family. It was a sweet reunion and a chance to catch up on our old Ward family. We are out of the loop here in Texas and I really hadn't heard how you were doing. Pete referred me to your very inspiring blog. You truly are a man of courage and grace, using this opportunity to record your journey and help and inspire others on their way. I always felt those kind, piercing blue eyes of yours really could read people (you are skilled!) and seemed to convey such Christ like love. I really hope you know...really know the positive affect you have on others. John and I will pray for you, but I feel assured you are in Heavenly Father's tender care. Much, much love from the Blakes

Reply
Becky Carlson
8/6/2016 02:57:10 pm

Hey Greg,
You keep amazing me with your realistic, positive outlook on life's trials. Something to check out: Have you tried Solent?

https://www.soylent.com/

My 27 year old son has been using this for the past few years. Soylent has everything your body needs. ( There is even an old Charleston Heston Movie with that name...LOL) My son, Hunter, is OCD and his range of food items is limited. He does not eat meat (does't like the texture). Hunter is active and knows he needs the nutrition. We had him on protein shakes in his teenage years. He found this Soylent.

Maybe if nothing stays in your system, give this a try. Maybe the nutrients will at least stay?

God bless you and your family. You'all are continually in my prayers.

Love ya !
Becky

Reply
Misa Lawson
8/7/2016 08:53:49 pm

Hi Greg,

It was so great to see you at the Homestead High School class of '81 35th reunion. I appreciated you sharing your story about your condition. Your positivity mixed with realism is inspiring.

I loved reading your blog, too, to get the whole story. Your gift to me is that I feel more courage to face any inevitable adversity that comes my way in the future.

Leslie, Judy, Lisa and I hung out today after the reunion. They are also inspirited by you! I look forward to continuing to read your story, Greg.

Big love,

Misa

Reply
McKay Florence
8/19/2016 07:10:31 pm

Greg, Thank you for sharing your journey. I find myself at once inspired and deeply introspective about my own life experiences when I read your posts. I can't help but think about the powerful scriptural image "a light on a hill cannot be hid". Your light burns brightly. Thanks

Reply



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