Patrick Update #6 (extended version)

Patrick Update #6 (extended version)

Dear family and friends,

Jana, Lucy, Anja & I want to thank you so much for your continued prayers, meals, donations, thoughts, love and shared perseverance. This has been a very very challenging time for the 4 of us – and each of you has made it so much more bearable – and meaningful, for through your loving acts and prayers, we learn more about the beauty of life.

Here’s a quick health update: We are 4 1/2  months into the journey. It all began with my seizure on November 29, 2016. Brain surgery happened 2 weeks later, on December 14, 2016 (Dr. John Park and his incredibly skilled and compassionate team at Cottage Hospital in Santa Barbara are amazing!) 4 weeks later, on January 6, 2017, we started chemotherapy and radiation. Dr. Brian DiCarlo, of San Luis Obispo, is overseeing the chemo. We started with 140mg of Temozolomide (also called Temodar or TMZ) for 42 days. Concurrently, Dr. Jon Stella, also of SLO, oversaw the radiation treatments. Over the course of 6 weeks – on a Monday thru Friday schedule – I received my lifetime dose of radiation (34 treatments.) Both the chemo and radiation finished up the week of March 8th. ….which brings us to this month. 2 Wednesdays ago, April 5th, marked a month since stopping radiation – which meant it was time to go in for my new baseline MRI. I am learning that every time we have an MRI it establishes the “new baseline.” We received the promising results last Friday.

Jana and I were literally in mid-prayer when Dr. DiCarlo came into the exam room:

“I’m happy!” he smiled. “The scan looks really good.” Immediately his phone rang – a call he had to take – and so Jana and I went from mid-prayer fear and faith moments before to exhausted faithful relief. Dr. DiCarlo joined us again shortly and we talked about the clean look to the MRI and what that means going forward.

In the primary brain cancer world (just as in the cancer world, generally, I assume) routine scans are the game. And progression free survival (PFS) is the first piece of data that you want to extend as long as humanly possible. PFS is the time from diagnosis to tumor regrowth. In the brain cancer world, too, the question is not so much will the tumor grow back, but rather when will it grow back? Will it be years and years – or months? These are the questions that have Jana and I holding each other’s hands (and collective breath) and lifting up our requests before the Lord constantly.

Our hope  and prayer this first time around was basically no news. After all, the tumor had been 98% resected (removed) back in December, and we have been throwing the kitchen sink at it what with the Temodar and radiation. My most concerning symptom has been persistent headaches (other lesser symptoms include mohawk, obsession with motorcycles, and fatigue.) The alternatives to no news are swelling (aka “edema”) and/or regrowth. Thus, we were blessed with “no news.” Ultimately, the treatment is working so far – just as expected – and the plan going forward is unchanged: continue with the chemo in a 5 days on X 400mg / 23 days off cycle – for at least a year – and have MRI’s every 2 months.

And so that is the update from the science perspective of our life at the Reed household. Just to finish that off completely, I will say that the fatigue from the treatments has been quite challenging. Never have I felt so constantly exhausted. Daily, I will lay face down in all my clothes, shoes, etc. on the couch – with all the lights on, Anja playing her violin, motorcycles (see, I told you…:) whining at 40 mph down our street — and I will wake up disoriented 3 or 4 hours later.  …And this is the daily occurrence. Not so good for business… or the kids’ homework… dinner… etc.,… Oh well, such is healing, I guess.

And then there is the spiritual side. This has been very very challenging emotionally and spiritually! How to be honest with one’s own emotions, protect the kids from too much reality, be upbeat for your spouse (going both directions), be honest with God, answer honestly to friends’ questions about how’s it going?, etc. These are formidable obstacles.

So, for simplicity’s sake, here are some FAQ’s that I figure would likely come up in — say — a town hall meeting if we held one…. yeah, it would be almost as dull as the political ones are… Anyway, these theoretical questions and answers may help to give a true sense of how we are spiritually and emotionally:

FAQ’s

Questions for Jana

1. How are you doing?

This is difficult. I don’t understand why our family has to go through this, but I am trusting God. I am medical, so I know too much – which is not good in this case. I know all of the what-if’s in this type of cancer, and it is so hard.

2. If I don’t know when to call – because you work lots of nights – when is the best time to reach out to you?

You can call me any time – day or night. At night, I’m likely up, so that’s a great time to call; during the day, if I am sleeping, we are very careful to turn our phones on and off, to silent mode, etc. If it rings while I’m sleeping, it’s my fault — or Pat’s:) But honestly, please call anytime. I need you to reach out to me! And Pat needs people to reach out to him, too!

3. What is your greatest need right now? How can I help?

My/Our greatest need is to be reassured that we are not alone – that our support network has our backs – just as we have learned to let others in similar tough circumstances as we are know that we are there for them, however they need, no matter what! This is what we need – and what you have been providing! When one faces his mortality, lots of former “priorities” fall away – and what’s left is loving family and friends who are willing to help in any way necessary. And to hear this commitment expressed honestly and clearly…. I think this is what the Gospel is actually all about. So yes, this is our greatest need.

4. Have your priorities changed since Pat’s diagnosis?

As I alluded to above, yes, our priorities are pivoting. Especially during the first days and weeks of diagnosis, the “silly priorities” fell away. Sadly, as life normalizes, it’s easy to fall back into the same patterns of putting emphasis on things of little consequence. At any rate, we are more thankful for God’s constant blessings.

5. What advice would you give to wives whose hubbies have been recently diagnosed with Cancer or another tough diagnosis?

Have a strong faith in place in advance. Be prepared. And work at this as a couple. Pat and I have struggled through some major issues in our marriage in the last couple of years — okay, fine, in the last 17 years of our 17 year marriage — and because we finally began dealing with these issues head-on a couple of years ago, we were well-prepared for this present trial.

6. Is this trial drawing you and Pat closer – or is it straining your relationship?

Fundamentally, Pat’s brain cancer is drawing us closer together. We see the 2 options before us rather starkly: fight together, relying on the Lord; or isolate, fight each other and raise our fists to the Lord. In a couple like us whom the Lord has prepared for this, there is only one way: to trust in the Lord together. And with 2 together in the fight, when one is weary, the other is likely ready to stand and fight and encourage — and vice-versa. We are a team.

7. How are Lucy and Anja hanging in there, and how is this affecting you?

This has been such a hard time for the girls. They don’t understand the gravity of the situation. They understand enough to be afraid. Their dad is changing. He looks different. He acts differently. His personality has changed. Their lives are in flux and they are in desperate need of security, safety, and a predictable life. This being said, they have done incredibly well. They have endured their papa’s brain surgery, visiting him just 2 days after in the hospital. They have loved on him and are learning to pray for both of us. They have been super strong, and I am so proud of them.

Questions for Patrick

1. How are you feeling – both physically and emotionally?

Most days right now, I feel pretty bad. Totally exhausted all the time. Bummed I can’t drive. Bummed I can’t consistently work for hour upon hour because I am so beat. I have gained well over 20 pounds. I can hardly run because of exhaustion and added weight. I am not really in physical pain – except for head-aches. Okay – I am done complaining:)

2. How can we pray for you?

Jana nailed this one above. See her answer for her question #3 above.

3. What’s your prognosis?

I actually just asked the “P” question last week for the first time – albeit in a round about way. I believe that most people in the cancer world know that there is only one answer to “How long do I have to live?” and that is “I have no idea, but you are unique, you are not a statistic.” But to be a little more helpful, oligodendrogliomas are among the slowest growing of primary brain tumors. In fact, it’s likely that I have had this “oligo” for the better part of a decade — slowly growing in stealth mode. Given that my tumor was an advanced and aggressive grade 3 (“Anaplastic”), when I had my seizure and it was discovered, it is likely to recur sooner than a lower grade oligo. Generally, the tumors eventually recur at a worse grade and in the same site as the original tumor. So, our goal is to keep the tumor dormant for as long as possible. That will likely determine my ultimate prognosis. I also am literally blessed to have 3 very important genetic markers which point to better prognosis. One of them extends my likely overall survival (OS) 5-fold — from, for example, 1-2.5 years to 7.5 to 10+ years.

I want to add that in the last couple of weeks, my outlook itself has been pivoting. I have been very — call it “depressed” — at times, but I am learning a different way to view all that we are facing in this diagnosis. Here are 3 key changes in my thinking which I hope will also inspire you:

 

A. I am not a statistic, nor am I a diagnosis — I am an individual.

B. I choose to stand, fight and beat my cancer. I choose to take control of my life and treatment and to “own my prognosis.” This means that I will not listen to statistics as the final word on my prognosis. The stats are great regarding which course of treatments may be most helpful, but they cannot accurately assess the particularities of me. By taking ownership of my prognosis, I mean that I refuse to believe in the dismal numbers so often predicted. Even when the stats say that 90% will be dead in 5 years, 10% won’t be — and of those 10% some — maybe all! — will live to “normal” life expectancy. So, I choose to believe that I will beat this cancer. And I will.

C. In my fight, I will use all of the tools, drugs, treatments, alternative therapies, my faith,  etc., to combat the disease. I choose to do as Winston Churchill famously said and “Never ever ever ever…. ever give up!”

4. How are you and Jana coping with all of this?

We are doing our best – and that means – trying to do the right things: non isolate, accept help, pray fervently, read the scriptures as often as possible, ask the Lord for total healing, extend grace to each other — much easier said than done, accept each day as a gift, reconsider the major priorities of our life.

We have some really tough days. Really really tough days. Just like each of you, no doubt.

5. How can I help?

By praying for me, for Jana and for our girls. And by calling up, asking “how are you?” and then just listening… this is a key thing I have learned through this fight: call up those you care about and LISTEN:)

6. What is the most important thing you have learned through this ordeal thus far?

Life is precious; take no day for granted; love one another; love is an action; God is always good.

7. Will you ride motorcycles in the future? If so, what will be your next make and model?

I totally appreciate this question! Yes, I do plan to ride in the future. As soon as I get my license back, I am hoping to trade in my Honda Forza 300 for a Honda NC700X-DCT.

8. What are you most looking forward to when life normalizes a bit?

Taking Jana away for a romantic weekend somewhere fun.
Kicking the soccer ball with Lucy in the front yard and teaching her – finally – how master juggling the soccer ball
Playing volleyball with Anja — also in the front yard
Taking the family to DisneyLand!
Riding my motorcycle across Death Valley (hopefully with Jana…… if she will finally come around….)
Skiing at Mammoth
Running the Boston Marathon in 2018
Completing the World Marathon Challenge within the next 3 years
Completing the Western States 100
Finishing my book “Running & Seeing” and promoting it
Progressing in my financial advisor role with MassMutual

9. How’s work going?

It is hard, but I am slowly getting back up to speed. And I have a great story to tell now to encourage folks to look ahead to the what-if’s of life and get a plan in place.

10. Are you doing any alternative therapies?

Yes. I am taking the supplements Circumin (from the Indian Spice Tumarec) and CroNaxal (recommended by UCSF doctor.) I have also done 6 sessions of acupuncture in an attempt to fight my recurrent head-aches. By the way, I highly recommend my acupuncturist, Ken Drake, son of Sue McDougal who works at AG hospital with Jana. Ken trained in China and knows what he’s doing and has a passion for it.

11. I have a friend/relative with brain cancer. Can they reach out to you? What is the best way?

Absolutely. They can call me anytime @805-234-8313

12. Did you dye your Mohawk for Easter? If so, what color?

Yes. Air Force Blue with streaks of pink and green…