A Letter of Thanksgiving and Encouragement To You, Our Friends and Family
A Letter of Thanksgiving and Encouragement To You, Our Friends and Family
Today is a Sunday in January, 2018 impossibly, and I write to you from my favorite writing spot – our bedroom. Jana is working the first of 4 night shifts here in our sweet hometown of San Luis Obispo, CA, and our girls are neatly tucked in bed. Lucy, now 12, and Anja, 10, are so sweet, and we count every day with them a wonderful blessing. It has been far too long since I have written to all of you – our great support in our family’s fight against my brain cancer – and I came upon the letter below which I scrawled a few months back on the first anniversary of my initial seizure which began all of this trouble. I want to share it with each of you as a way to catch you up on our life and to say thank you and to send our love to you.
A couple of things before I leave you alone with the letter. First, we are doing pretty well. The 10 rounds of chemo – since the initial 6 week daily chemo treatments during radiation – have taken their toll. I ran a total of 8 days in 2017, an all-time low for me in my adult life. I ballooned to 175 lbs. at some point last year, but am now down to below my normal weight. With every month’s chemo treatment, we again relive the last wave of nausea and debilitating fatigue of the month prior until the 3 weeks of rest between therapies are over – and so it continues. Usually in the first half of each month, I operate on a couple of decent hours of energy a day, and only at the end of each cycle do I feel like I remember what normal could be. I long for the days of running daily and riding my motorcycle for more than 15 minutes at a time. I dream of running ultra-marathons and cannot wait for the energy to resume a semblance of the training I love.
And so these days – as we now look to our next decision about how long the chemotherapy will continue – we are in that delirious hoping phase. Hoping that normal will happen again, aspiring to work again, run again, be again.
I know that this letter finds each of you in your own battle. For many of us, disease has hit us personally or, like in the case of my mom – who just fought a bout with breast cancer – has struck one near and dear to us. For others, car accidents, bad choices or the ups and downs of the elusive “normal” life have us asking the Lord “Why?!” and in some cases doubting if there even is a God in Heaven. And so I don’t want all the attention to be attracted to me and our challenges. Rather, I hope that in the way we fight our battle, you might find encouragement for yours. This is why I still keep my hair super short – not quite the mohawk of last year, but my scar still very obvious. I just want to be a witness to Jesus Christ and his real and practical power in this life.
To this end, I will say that I have been through LOTS of therapies this year – speech therapy to help with cognitive deficits, psychological treatments and emotional and life-coaching therapies, not to mention dietary, marital and spiritual counseling – and in so many cases I am encouraged to put on the right “attitude” of unbounded hope and health. But I am not convinced that much of this counsel syncs with scripture. I find, instead, and have from the outset, that to walk in the way of Jesus means to look the disaster in the eye, recognize it for what it is, and to choose to walk, as it were, into the fire. To press on into the void, the depression, the pain, the sorrow, the lost days and years, and to even concede that it may cost me my life. And the one consolation I hold to is my faith that Jesus, my Redeemer, lives. My faith isn’t in my own health or my own attitude or my own choices, nor in my own dreams. My faith is only in Jesus Christ. So, I have been concluding today that I would rather die for Jesus Christ than live without Him.
Of course this is easy to say, but when the pain comes – like 2 Mondays ago when I found myself puking all over our rug in the living room – when it comes, as I know it has come in one form or another to each of you – it is another thing altogether to live out our words. I confess that in that instance 2 weeks ago, I immediately was on my phone texting my friends for some way out of the pain and nausea. In that case, then, I failed. But that’s okay. Because, it’s not about me – or you – it is about Jesus working in us. And He is strongest in us when we are weakest. For then we are humbled and in the place where we see that He alone is our only way home.
So, I write these words to you that you will be encouraged in whatever trial you find yourself in. Know that though our situation looks grim, there is hope all around. I just dream that the way it plays out is me running the Western States 100 mile Endurance Run one of these years, reflecting a little more of God’s glory. I pray that it looks like Jana and I holding hands in our rocking chairs remembering again how wonderful were the years we shared. I wish that it is us and our girls at graduations and weddings and anniversaries and Christmases….
Finally, before my letter – a bit of FAQ for you to get details on us.
How is Jana?
Jana is totally beat. Work is relentless, and Pat is moreso (this is me, Pat, writing but telling the truth:) Pat’s moods are as shifty (and a word very similar to “shifty” also comes to mind 😉 which is not surprising given the amount of Keppra he’s on (just upped the dose) not to mention the roller-coaster of having brain cancer constantly battling our subsconsciousness. Jana has had some good moments this year, though. She earned her “flight wings” at the end of 2017 after having finished up her training; so she is officially a flight surgeon in the CA Air National Guard!
What’s Pat’s general prognosis?
Pat’s high grade 3 brain cancer is a chronic disease without a cure. 90% of the time, these tumors recur within millimeters of the initial site, and generally they progress in their severity. If there is a recurrence, a key concern is that there is very little room to operate in the area of the first tumor. The left side of his body could take a big hit, therefore. On the positive side, the tumor is not majorly affecting the speech/cognitive functioning at this point; it is more likely that motor and sensation are most vulnerable right now. Given the cancer’s malignant nature, spread across the brain is also a concern – but so it getting hit by a car….
How are the kids doing?
Lucy and Anja are doing very well. After the initial shock and surgery and recovery, we settled into our “new normal” and the kids are just plugging along. There is a lot of uncertainty of course – lots of unasked questions, we know – but they have been wonderful, supportive and full of love for us and each other. Jana will argue that I am sugar-coating things – and I confess I am – but I don’t know how else to say that I am really proud of the girls and know that they are ultimately being strengthened in their characters by this trial.
What does treatment look like going forward?
We are now just 2 months from finishing up the standard of care treatment. We’ve had bi-monthly MRI’s and with the exception of one “funny” reading and an area “to watch closely” things have looked stable. Given that Pat’s blood numbers are holding strong, we may likely continue on the chemo regimen for at least another year. This will be guided by Dr. Butowski up at UCSF with whom we plan to meet in the next month. We are also doing our darnedest to avoid another seizure. Pat already lost his license for 6 months last year. Another seizure could mean giving it up for good. Given his love for motorcycling, not to mention ferrying the kids to school, violin lessons and soccer, anti-seizure meds are a fixture.
How are your spirits? How are you holding up?
Like you, no doubt, we go in waves. One evening, we are weeping, the next we are oblivious. One morning, we are hiking and sometimes even running, the next the nausea is completely defeating. Ultimately, we go one day at a time, one step at a time, one moment at a time. And all the while, Pat sleeps constantly!
And now, for the letter which prompted this post to start with:
November 29, 2017
1 Year Anniversary & Going Strong
Dear friends and family,
First, please forgive me for being so slow in updating you on my and our family’s health. After a first few vigorous and colorful updates beginning shortly after our roller-coaster began exactly a year ago today, our family found itself too deep in the recovery and treatment zone to put words to paper to give you all an update. Let’s see how this goes…
One year ago this afternoon, I unexpectedly suffered my initial seizure as I rode out towards the coast on my 300cc Honda Forza. Thankfully, as you’ll likely know, I felt an aura that “something is very wrong with my body” and I pulled off of the highway before the seizure got me. Within hours, I was diagnosed with a brain tumor.
The ensuing weeks were a rush of confusion, fear, sadness, faith and the coalescing of our family bond. What had seemed all important just days before – grades, marital spats, meals, work – suddenly faded into a new hierarchy as Jana, Lucy, Anja and I drew closer and closer to each other, truly sharing in the questions and courage to which we were called to step up. Immediately, the kids’ mattresses were pulled into our bedroom and we, 4 across, kept vigil over each other.
As the days continued, medical questions abounded. We knew the tumor was sizable and we knew it could present a terminal prognosis. As I have shared with many of you, I spent more than a couple of those nights weeping quietly at our predicament, wondering at God’s leading and timing, and also seeking His calling for me and my family through this ordeal. In fact, this searching for God’s purpose in allowing my brain cancer into our life has been the hallmark of every day since. I knew that God is ever loving and has a great purpose in this suffering, and I spent the year looking for Him in the storm.
The inevitable surgery came 2 weeks after that first seizure. On December 14, 2016, I underwent a craniotomy and gross total resection of my tumor. Looking back, I see how my fear had blinded me from the possible more benign outcomes of my disease, and also the trying treatments and uncertainties that lay ahead. The surgery went perfectly, with 98% of the tumor removed. Then, it was time to wait for new terms I had almost never considered before: histology, pathology, prognosis,…
When we met with our incredible neuro-surgeon (Dr. John Park from Cottage Hospital in Santa Barbara) to get a sense of the diagnosis now that the tumor had been removed, Jana and I were acutely aware that we may receive the worst news possible: glioblastoma multiforme (or GBM). In this event, a 15-month median survival would be the likely reality. Thus, we were armed with sober expectations, and we were steeped in prayer – with, thankfully, so many of you fully engaged in our heavenward petitions.
My prayer, both the night before my seizure, and continuing to this very moment as I write, has been a constant calling out to the King of Kings: “To what are you calling me? Here am I!” I knew some of my answer was to come in that early morning meeting with Dr. Park.
To our joy, the Lord had protected us from the grade 4 glioblastoma multiforme for the moment! After my tumor was sent to multiple sites for histology opinions, the doctors felt quite confident of my diagnosis: Anaplastic Oligodendroglioma grade 3 with 80% mitotic activity. In short, I have the “best of the worst” of malignant primary brain cancers. The survival rates – though of course unique to each person’s specific tumor, health, age, etc. – helped us to breath a sigh. Likely, we’d have closer to 5+ years instead of 1!
At this juncture, I want to shout out to the Lord. He has today answered one of my chief prayers during those early days of the battle: “Please give me at least a year. Lord, I need at least a year to accomplish a few vital pieces in my life.” And this afternoon, at 2:30pm, the Lord Almighty, answered me loudly and clearly. One year from my initial seizure and going strong!!
I want to share that the key focus of the bucket list I quickly sketched was legacy: what do I need to do for Lucy and Anja, and for Jana, so that I have taught them all I need to teach them, told them everything I want to say, prepared a way for them so that they would lead strong lives of purpose regardless of how the illness proceeded – namely, lives based on having a heart for the Lord, a firm trust in Jesus Christ, an unshakable confidence in our Savior and Redeemer. And so I write.
The next challenge, that is still present to this day, is that of the day-in day-out battle for survival. Namely, the treatment phase. Since I last wrote, if I can think back that far:) I have undergone 34 radiation treatments (my lifetime dose) with concurrent chemotherapy for those 6 weeks, and 9 consecutive monthly rounds of chemotherapy. This is a regimen of 5 days on; 23 days off and repeat. The initial goal is to get 3 more good rounds of chemo in so that I have a year completed of these monthly cycles.
Unfortunately, the downside of all of this treatment has been a diminished quality of life. To put it in simple terms, I sleep A LOT:) This is great, unless you want to be an active husband and dad, a provider, a motorcyclist and runner, a hiker and soccer player and a cook. Needless to say, Jana and I have put nearly all of life on hold. We have made our best effort to “Stand firm” as the Apostle Paul encourages us to do. This and nothing much besides. And yet this is truly all that is required right now.
So, to wrap up, God has once again showed Himself to be perfectly faithful in this continuing trial. He carries all of our burdens, and we have seen that clearly this year. He provides, and we have known that this year. Throughout this trying year which started 365 days ago almost to the hour, my faith has blossomed! In the fight, He has shown Himself my relentless captain. The words of the Bible have never been so real and powerful to me, and never have I had the privilege to walk so invested in how He is working out His plan day by day. Never have I been so grateful for every day – as we try to cram all of the future into these days that are given to us. 1 year in, I can boldly agree with James: “Consider it pure joy, my brothers and sisters, when you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)
Be encouraged in whatever trial you find yourself in. God is good, He loves you, and He has a plan for you. Love, Patrick, Jana, Lucy and Anja