The Transplant Begins

On Sunday, Nov. 2, Meg and I will move to our short term apartment in Menlo Park in preparation for the Stem Cell Transplant. The following day, I will be admitted to the Stanford Hospital for the first of two chemotherapy treatments. The first treatment is BCNU which is a unique application that not every transplant center uses. Stanford protocol believes that it gives the best outcome for long term remission. But like many chemotherapies, it’s rooted in an infamous past use. BCNU is, in fact, a derivative of Mustard Gas. Yes, the deadly World War I agent that killed so many.

It has a two month window in which many develop lung problems which must be addressed so watchfulness will be the order of my holiday season. Once I have received the BCNU, I will be sent back to the apartment to recover for a day. On Wednesday, I will return to the Cancer Center and receive the second chemo Melphalan. This treatment has a side effect of mouth and throat sores so that’s no picnic either. I’ll recover for the day and on Friday return to the Center for the actual transplantation of my harvested stem cells.

From what I hear, most go back and sleep for many days until the fourth, fifth or sixth day after transplant when the original blood counts plummet and many recipients are required to re-enter the hospital for transfusions or to fight the infections that can follow. I’m told by my doctor that’s about sixty percent of the patients.

During this time, I’ll be making a daily trip into the Cancer Center for blood tests and potentially treatments of various side effects. No one who goes through the transplant has told me that it is anything other than a difficult ten day period. As one guy, Eric, says, “The cure is as bad as the disease we are fighting.”

On a more positive note, we have been very blessed with the success of the Comedy event. All told, we were the recipients of more than $10,000 in proceeds. It was a great afternoon of fun and laughs and now the costs of the co-payment for the apartment is completely covered. We thank everyone who participated and supported the day. I have not been able to write all of the thank you notes that are appropriate at this point but hope that following that first two weeks of recovery, I will be strong enough to write a few each day.

A Wink of Mischief

There is no question this cancer thing stinks. But the question keeps coming back to me; “Then what’s the difference walking by faith?”

My friend Rob, messaged me the other night, asking about things and encouraging me to look for the *Wink of God’s mischief that might be afoot.

I will admit that those who don’t share my convictions about Jesus might take my comical view of things as a bit perverse or delusional. But like Rob, I’ve found that in every tragic turn, I’ve seen God’s grace in the aftermath. And, just as Pascal argued, what’s the alternative? Nothing that suits my worldview.

As it stands now, I’m going through the mobilization phase of the stem cell transplant. Last Friday, they began the process of killing off all of my white blood cells with a megadose of Cytoxan. For ten to fourteen days, I am fighting off the nausea, avoiding infections and taking daily shots of Neupegen to rebuild stem cell growth. Each day at 1 PM I sit in Meg’s office after she has laid out all the needles and receive those four shots. Then she cleans the Hickman catheter with rinsing injections of Heparin.

Beginning the eighth of October I go in each day to Kaiser to check the growth progress and sometime around the 13th I should be ready to donate my own stem cells.

I took a break from writing this to get those shots and now I’m heading to the front couch to look out on the newly installed plants at the parsonage. The last few days have really stimulated the growth and there are plumes, flowers and new shoots growing. Maybe that’s the wink I’m looking for.

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What I Learned as a Member of the SF Giants.

DENVER, CO - APRIL 09: Starting pitcher Barry Zito #75 of the San Francisco Giants delivers against the Colorado Rockies on Opening Day at Coors Field on April 9, 2012 in Denver, Colorado.   Doug Pensinger/Getty Images/AFP== FOR NEWSPAPERS, INTERNET, TELCOS & TELEVISION USE ONLY ==

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My brother, Mike, who noticed the tone of our phone conversations turning a bit bleaker, decided to do something. As a former scorekeeper of the Class A San Jose Giants farm team, he knew several contacts in the organization. He called and hired Derin McMains, the Peak Performance Coordinator to consult with me by phone to discuss the mental aspects of my situation.

I regarded the six weeks of July and early August as a trial in patience. With my cancer markers stalled out at the Kappa Light Chain level of 1235, my spirits flagged a bit. Stanford wanted to see that number reduced to 350 before moving forward. My hematologist admitted that no further progress should be expected from the regimen that is currently regarded as the standard of health treatment for Myeloma. I began developing aversion reactions when I went to the infusion center. I could smell the chemicals in the room. The Velcade shots began to hurt more than before. The bright blue chemo pills of Cytoxan began to make me nauseous before even swallowing them. These are what cancer studies are now calling the first signs of PTSD in cancer patients.

I found the discussion with Derin a breath of fresh air. When I mentioned my anxiety rising on my weekly chemo infusions, he suggested developing a play list for my IPOD that I would listen to on the way to treatment and right through to the moment of the shot. As I listened to Bocelli last night, I realized it was the beginning of a brilliant idea.

I had told him I found my nurse a little (Ok, easily distracted.) She often skipped steps from one injection to the next and seemed anxious to engage in small talk. Frankly, I was too scared to engage so I began to dislike her. When I think about it, she probably gives forty to sixty shots per day. How can you not be a little distracted? But I certainly did not want her unfocused when it came to me. Every time she dropped the syringe container, forgot to clip my patient band or to write down my weight, I was certain she was going to do something disastrous. But Derin’s suggestion was again brilliant. He suggested that at the moment the shot was ready to be applied, I should ask her a question about the shot itself. It would help bring her to focus!

In my right mind I would have come up with these ideas but when so deeply invested I found I lost the objectivity necessary and was running on pure emotion. Perhaps his biggest contribution was to ask me what are the three most important things I want to maintain in my life and which extend beyond the next 18 mos? He recounted asking Barry Zito the same question in 2012 when he was struggling so badly in his pitching. Zito was embarrased by his performance and that added pressure only made his efforts worse.

Zito said: 1) To give it my all every time I take the mound.
2) To be the most encouraging teammate I can possible be.
3) To show up on time and do the work necessary as a professional.

Derin pointed out that by Barry’s own admission he was doing those things, but he had also inserted other outcomes as added burden. When Zito realized that he was being true to his core values, he began to relax, to eat better, to get more sleep. And as we know, the Giants would not have won the 2012 World Series without Barry Zito’s incredible contribution.

So now this week I’m reviewing my Core Important Principles.  The things that make me get up each morning and at week’s end, I’m calling Derin with those values but I can already see in a few days how some smaller ambitions occasionally creep in and stomp for attention.  I’ve been able to recognize that and put them in their proper place.

After the consult, Derin confided that he and his wife were people of faith and as such would make a special time at dinner to pray for Meg and me.  I was touched by that given all of the people he works with within the Giants major and minor systems.

The Immortality of the Soul

Peter Thiel of Paypal and Facebook fame, threw a fireside chat with hundreds of tecchies and my favorite theologian, Tom Wright recently. Here’s Wright’s thoughts on why it’s ok to believe in a long time term life.

http://www.forbes.com/sites/valleyvoices/2015/06/24/peter-thiel-n-t-wright-on-technology-hope-and-the-end-of-death/

Ashes for Ashes, Joy in Mourning

Helmut Thielicke, the German theologian, warned any aspiring pastor that telling God’s truth is like a child stepping into a grown man’s suit of armor. Most of the time the elegance of the bravery is lost by the comical nature of the girl or boy wearing the garb. Even more so, when he or she holds the sword of truth above their heads with two hands, hardly in control of such an awesome weapon.  I have felt that way most of my life as I’ve read and preached the rich truths of God’s rescue mission for humankind while constantly worried that others would see the shallow ways in which I’ve lived them in my own life. Nevertheless, I’ve been challenged by my own decision to blog about what’s going on with this Myeloma and to stay truthful about the conflict between my own feelings and the walk of faith that, beyond my ability to deserve it, has proven God’s faithfulness time and time again.

As it’s become clear that at least for the present, the awful cancer is mounting a comeback and has successfully regained some ground against this chemotherapy.  Enough as such that my neatly organized battle plan has come unstitched and that I will have to wait for the transplantation process.  It took alot of gumption to be ready to go through with it, and now I find its delay not a relief but a dark cloud of forboding.

The realities of the past ten days have affirmed the things I have preached and read in the Bible; things that I guess on a deep level I haven’t really believed personally.  Others that have a stiffer constitution may think I’m a ninny for being so shallow but I’m surprised at how much I have to learn about things I’ve preached so confidently. So here’s the two main things that God has dragged me into and from where I sit, I guess I’ve had to learn them the hard way. I write these things now, both hopeful and desperate because I think that when the time comes I will lack to strength to describe what now is just faint aroma of future experiences.  Forgive me if they are too frank for such a piece.

The Human Body as Marvelous as It Is, Begins to Turn Quickly to Dust. I am surprised at how vain I am in the wake of my body beginning to betray me.  When the nurse at Stanford pointed out that my present height is three inches shorter than in my glory days, it was like a mini death. I can’t believe how upset I got that I was no longer 6 foot in stature, but instead 5’11”.  The curvature of my spine is now significantly obvious and the anemia has significantly weakened my muscle framework.  I have chemically aged ten years in the past six months.  Many have encouraged me that these issues will resolve when the cancer gets under control but it’s obvious that the strength and stature that I have often used are now of no use.

Second, the chemotherapy and the cancer itself has created a body odor which is like none other I’ve ever experienced.  There have been times when no number of showers and colognes will sufficiently mask the state I’m in. Frankly, it is the smell of poison and death in early stage.

Suffice it to say, I now understand why so many have refused the offer of visitation while they were going through this stage.  It causes an alienation that you can only attribute to the bowels of Hell. It is difficult to die alone, but painful for loved ones to see us in this state. It has prevented me from hugging and kissing my wife. I find myself removed from crowds and mumble words, lest my breath be too odorous.

My good old friend, Steve Givens has warned me that chronic pain alienates in an insidious manner and were it not for his advice, I’d be tempted to pull away altogether. But though I try to stay engaged, I can’t help realize that many of the ups and downs of the battle must be fought inward and alone. This was made even more painfully evident this past week when it was obvious that caring for my beloved Canto was an impossible task.  His behavior without my supervision became erratic and even dangerous. Twice he ran into the street in the rush of traffic to greet a visitor. Things he’d never do otherwise. So it pained me to no small degree to give him to a loving family who could care for him.

I have been miserable since.DSCN0382

I Believe in the Immortality of the Soul. Why? Because I so desperately want to live. In some strange way the dignity of humankind to scrap and survive is not just to leave the planet a better place for our children. I want to fight with every last breath to accomplish what I’ve been put here to do.  I don’t think I’m egotistical about that.  I see God’s vision for a just world and I haven’t finished my race.

To be frank, there are moments when I do have doubts about death but everything I see about humankind I now see from God’s perspective.  It’s a fascinating picture of grace.  We think the world is going to heaven because gays can now marry and we think the world is going to hell because a crazy guy used a handgun to kill black church folk.  In the middle of all of our bloated political thought, God is working with people who are a heartbeat away from turning to dust. And he is only a whisper prayer away from totally re-writing our identity to something truer and more complex.

At the end of July Dr. Anthony Le Donne will come to a public lecture and present the upside down Hope that is found in a God that identifies with our Suffering, rather than a God who identifies with our need for a Superman.  I pray that I am well enough to learn from Anthony’s talk. I think I’m only beginning to understand this Christian stuff.

The Afterlife According to Beetlejuice

beetlejuice3

I had no idea that getting a terminal illness meant that one was doomed to fill out paperwork for the first six months of treatment. Except, of course, you take your theology from BeetleJuice, where suicide takers are doomed to work civil service in Purgatory and everyone waits in line like the DMV.

In the midst of adjusting to a chemobrain and daily nausea, I’ve had to drill down into various insurance issues related to long-term care, health and co-pay and life insurance. While Meg is managing the fifteen different drugs I take, the schedule of doctors’ appointments and blood tests, I’m trying to figure out how to apply for discounts and grants that are available. The problem is they all require applications.

My morning waking hours are spent applying for considerations in a variety of different programs and agencies. Also, I’m trying to automate my publishing business issues so that payments and royalties are shown in their proper place and where they can be captured if I’m no longer in the picture.

I’m also trying to clarify each oncologist’s interpretation of my numbers and the requirements of my future fight.  My local guy sees my cancer as hyper aggressive and therefore, he’s reluctant to make any promises whatsoever on the efficacy of any future treatment.  My second opinion doctor from Walnut Creek is more positive, choosing to see the transplantation as at least the opportunity to kick the cancer can down the road and buy time for future chemical treatment options.

The Stanford doc is the most positive, portraying my cancer as mid-range on the aggressive scale and while he isn’t rosy in the assessment of what must go on during the Bone Marrow Transplant, he was pretty optimistic that a year from now I should be feeling like my old self.

Anyway, I choose to stay positive but can’t help think of succession plans when it comes to the church and issues related to my publishing rights.  I have several folks looking at my screenplay now and would not want to miss the chance to get some interest there.

Finally, I’ve been so grateful for the financial support by so many in the recent days.  I’ve done my best to calculate the costs of the transplant and the costs seemingly are coming down to around $10,000 on a worst case scenario.  Kaiser re-imburses $100 per day so maybe $3300 of that will be coming back after the fact.  Of course, I’ve got paperwork to do while I’m in quarantine.  So I really will look like a Beetlejuice character.

Here’s the details if you still wish to give:

You may send contributions to

Dan’s Redemption Road

6687 Oakmont Drive

Santa Rosa CA 95409

Or use Dan’s Paypal account where He collects his speaking and wedding honoraria.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=WVLBKNXMYA4Y6
Thank you in advance and on Dan and Meg’s behalf,

 

There Is a Time to Cry

Thursday, we finished 90 minutes worth of interviews with the Stanford Transplant Oncologist and his nurse coordinator. It was a grueling process full of statistics, biology lessons and timetables that seemed hard to track. Fortunately there was a patient handbook given to each transplant candidate. I’ve read it thoroughly four times since that appointment just to remember what was covered.Megnme

Now, here, back at the Stanford Cancer Center, it was time to interview with a social worker who would presumably sign off on the mental verity of the interviewee;  A 62 year old pastor with high blood pressure and a history of depression. I also have cancer in more than 70% of my body’s bone marrow. The social worker was all of 27 with skinny jeans and capezios.  She could be one of my son’s most recent love interests gathering from what I’ve seen of his choices.  I felt a bit flustered by someone so young making such tantamount decisions on my mental stability. My unhinging were the capezios, I’ll admit.

She asked if I understood the condition I was in, in other words, did I understand the decision required about a bone marrow transplant. In my best academic, condescending tone I summarized the details of Myeloma and the state of the standards of care that are currently guiding the treatment. Nailed it.

She pushed in more intimately. “I see you have had a history of depression.  Can you tell me about that.”  I avoided the details of living through a marital infidelity and the unrelenting agony of divorce and chose to summarize the biology.  “My main symptom of depression has always been an fitful sleep pattern which leaves me awake at 230 AM and unable to sleep until morning.  The daily fatigue is difficult.  I use anti-depressants to help even out that sleep pattern.” Ok, dealt with the hard question.  I’m still in the running.

She wrote a few notes and then moved in with a professional skill I now appreciate. “So tell me how you feel about fighting this cancer.”

I paused and said the first thing that came to mind, “Well, it’s really been a test of my faith.”

What had my faith included?  Frankly, the joy that had been found in marrying Meg a year previous.  For ten years I had served the congregation in Oakmont as a single pastor.  I had been appreciative of their open minded willingness to allow me to serve as a divorced father of three.  It was a big leap of faith for them to trust my stability and I have always been grateful.

But I felt I had paid my dues.  Single and out of ministry for five years. Single and in pastoral work for almost ten. Finally a new light had spilled into my life in the form of this beautiful, radiant woman of God, Meg Gaucher.

Unfortunately, the were some early problems that beset our marriage.  My bad back was so painful, I couldn’t in my best state, help her drive her belongings from Pennsylvania out to Santa Rosa. My congregation and friends held back their confusion but you could tell they were asking, “what kind of man does that to his new wife?”  Her arrival didn’t make things easier.  My back pain increased as we moved furniture, made love or walked long hikes.  Not a great way to start.

So the social worker’s question had touched a nerve. I had been married for a year and my wife had been my nurse for eight of those months.  It has rocked my faith.

That’s when the tears began.  They really haven’t stopped in the past two days.  Even though Meg insists it’s her deepest pleasure and yet clearly not what she wanted, she’s good to go with whatever I need.  So now that kind of love makes me cry all the more.

The Numbers and Chemistry of Cancer

It’s now been eight weeks since that Easter Saturday when the bone marrow biopsy confirmed the diagnosis of Multiple Myeloma. Eight weeks of chemotherapy. Eight weeks that have felt like eight years and eight days at the same time.

There is a marker for MM that helps measure effectiveness in treatment and that is the measurement of Kappa Light Chains. Light Chains are complex molecules which clog up the system and at the highest level my marker number had been at 3500. In the past eight weeks that number has bounced back and forth but not really reduced. That speaks to the aggressive hold the cancer had in my system.

But now finally I’ve experienced a significant drop from the 3500 number to just over 2100, which is a drop of 30%. Hooray!!!

So, tonight, Wednesday May 27, Meg and I will be traveling to Stanford to spend the night and tomorrow meet with the Bone Marrow Transplant Team for a qualifying interview. They will be interviewing me for healthy viability (they only perform 300 transplants per year) and we will interview the team for the decision itself. There are some in the discipline who believe the transplant is too dangerous for an uncertain return. They also believe that so many cancer drugs are coming to market that perhaps that’s the best course of treatment.

Stanford_Hospital

As an update, we have been blessed by the donations that have been made on our behalf. To date, $3000 has been donated and costs such as the lodging at Stanford have been allayed by the financial support. We appreciate it so much. If someone still cares to help, the website is to use Dan’s Paypal account where He collects his speaking and wedding honoraria.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=WVLBKNXMYA4Y6

You may send contributions to

Dan’s Redemption Road

6687 Oakmont Drive

Santa Rosa CA 95409

Dan’s Redemption Road

Dr. Jack and Nancy Swearengen

Dr. Jack and Nancy Swearengen

I met Dan shortly after Nancy and I moved to Santa Rosa in 2002; as I recall he was teaching adult classes at First Presbyterian Church, and also leading the adult ed program. Dan and I share a zeal for a version of the faith that goes with us into all the places where life is lived—workplaces, offices, universities, malls, prisons, public gatherings, travel. We are of vastly different backgrounds, Dan and I—he of history, arts and culture; I of science. But we both take the Christian faith as our guide for life. We became good friends, sharing many meals and events, always rich with conversation and many laughs. We agreed that faith lived out in difficult circumstances can grow really strong.

But surely at this moment Dan’s faith is being tried at a level that hopefully most of us will never have to face. First the enduring pain—eventually leading to the dreaded diagnosis. The first round of chemo causes his heart to run like a racehorse. Followed by another blow: Shingles. Today Dan is facing six months of chemo (at Kaiser) and recovery at Stanford from transplantation of his own blood.

His out of pocket costs for the treatment will be in the neighborhood of $3500—or more if he decides to seek alternative treatment at the point of transplantation (UCSF or Mayo or Cancer Treatment of America are possibilities). Even as his medical expenses mushroomed, Dan’s income has tumbled because pain makes normal work impossible. He’s had to cancel many of the weddings he was scheduled to officiate, and suspend work on his Redemption Road Productions. Just when medical expenses leap, a big portion of Dan’s income has gone away.

A full return to work under any circumstance will have to wait until at least 2016. Oakmont Community Church has decided to allow Dan and Meg to remain rent free in the parsonage until then. But what happens if he can’t return to work on Jan 1?

The situation seems to me like the Biblical account of Job. “Stretch out your hand and strike everything he has,” Satan says to the LORD, “and he will surely curse you to your face.” And Job lost everything.

But Job’s response was to fall to the ground in worship, saying

“Naked I came from my mother’s womb;

and naked I will depart.

The LORD gave and the LORD has taken away;

May the name of the LORD be praised.”

Dan has continued to lift up God since the beginning of his diagnosis. He has ministered to us even through his pain and uncertainty. May we who have been spared such suffering come to Dan’s aid now.photo-1

You may send contributions to

Dan’s Redemption Road

6687 Oakmont Drive

Santa Rosa CA 95409

Or use Dan’s Paypal account where He collects his speaking and wedding honoraria.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=WVLBKNXMYA4Y6
Thank you in advance and on Dan and Meg’s behalf,

Dr. Jack Swearengen

Should We Go to Yosemite or the Emergency Room?

photo-1After church on March 1, Meg and I were supposed to leave for a five day adventure in Yosemite. The elders of my church had rented a house for us with dining privileges in the Lodge. A wedding gift for our marriage May 14, 2014.

But my back was aching and it was all I could do to get through my message. Afterward, there was a church social and I stayed long enough to walk through the dining tables and say hello to everyone. One of our members who had come from her care facility in Petaluma to join the meal was the last one I greeted. I sat for a few minutes with her and then said my goodbyes. I later found out her daughter was livid that I gave her such short attention span in the face of her effort to get to church.

At home I tried to gather the strength to leave but couldn’t lift anything into the van. Meg’s face slowly began to grow more severe. She finally put her foot down and said, “I’m not going to Yosemite just so that I can find you a hospital in Fresno. We’re not going.” It was a painful thing to hear because I know she was really looking forward to a healthy time away. And under the present circumstances that was not going to be the case.

That event  actually precipitated a more insistent look at my symptoms and a month later, the diagnosis was in.  But now that I am in the throes of chemo it has given me pause to consider this: “How long have I actually had the cancer present?”

For more than a year, I’ve not felt all that great but have passed the troubles on to getting older and being out of shape.  I tried to play thru it.  Meg has been angry with me because I did not listen to my body and when I think of my doctor visits, I’ve not been a very strong advocate for my own best interest.  I guess the stoic response and let the doctor do his job didn’t really yield a better outcome.  If anything, I’m pretty angry now about how this all played out.

Being on the other side of the diagnosis, I have to beat down the temptation to be angry and just get on with my part in fighting the disease.  If anything, now I’m pretty much on high alert and really searching for every physical response to every situation.  I have also developed an aversion to idle chatter.  When I go into the infusion center many sit and visit with their nurses and the conversations turn social, friendly and in many cases, the talk about physical symptoms of illness is a predictable topic.  But I can’t do that. I’m on edge.  I’m concentrating on the medicine coarsing through the body and mentally tallying how many people have lived and died going thru this room.

I felt that I had ignored symptoms for too long and now I’ve got to concentrate on what is happening.

So, this morning, Tuesday, I will meet a couple for a wedding rehearsal, head to the infusion center where I will get my Velcade shot to go with the dexadron and the other oral med and then come back to do a wedding at 5PM.  I’ll be hyper vigilant because, the rash on my neck has not gone away and I’m worried that it’s the beginning of shingles.  I guess it’s better than just letting the oncologist do whatever he thinks is best.

By the way, thanks to Patty Holderfield, I’ve also connected with Kaiser’s Content Management Oncologist in Walnut Creek.  He’s an expert in Multiple Myeloma and his second opinion will help me feel like I’ve crossed all my t’s and dotted all of my i’s.