We have a plan now for a memorial gathering. It will be at Illick’s Mill in Monocracy Park on Sunday, October 9, from 6 to 10 pm.
The photos in the collage above are from a walk we took last October in this very park, and the top center photo is Illick’s Mill. We would love for anyone who is able to, to join us on that evening. There is a parking lot across the street, and here are some links for the location and additional information about the venue (there is no actual website):
You can also contact me via the comment section with any other questions (which don’t have to be published here). Our family is looking forward to spending time with as many of you as possible – you have meant a great deal to us, both on this specific journey as well as throughout the preceding years.
P.S. For our friends in New England, we are hoping to have an additional gathering in New Hampshire as soon as possible. We know that traveling here, especially so soon, would be pretty difficult for most everyone. And it seems only appropriate to be able to celebrate together in the beautiful area where we were so privileged to raise our children and serve in ministry. We will keep you posted on the progress of that event.
This is the post that on the one hand I never wanted to make, but on the other am grateful for, because it means that Sandy is no longer captive to the shell of his once vital earthly vessel. He is free, and he is Home.
He deserves a longer tribute, which I will attempt to finish soon, yet I did want to get the word out as soon as possible to those who have been following his story. Thank you all again for your kind support, prayers, positive thoughts and love.
No, not the BIG questions (sorry for the teaser), but the everyday questions that people in our situation field from caring friends and family.
“What can I do?”
“How can we help?”
I’m probably not the only person who cannot answer such queries on-the-spot. It is all so overwhelming that it is hard to think of specifics when those questions come up. I was musing about this the other day and the thought occurred to me that there ought to be a registry – like a bridal or baby shower registry – that people can go to and see a list of what is needed and then match their own set of resources to something on the inventory. A Help Registry.
So I made a list this morning, and I thought that that by posting it here, anyone who is in our area and has the inclination could take a look and get a better answer than my usual “Oh, we’re fine, thank you though…” Because, to be truthful, a helping hand now and then would be a huge stress reliever, and we could bless each other in the process. Therefore, for those in the vicinity, and in no particular order, here it is:
Take non-curb items and shredding to recycling center
Pick up/drop off donations
Yard work (weeding, trimming/pruning)
Garden tool sharpening
Masonry repair on Bilco doors
Help with putting on a yard sale
Let me give you some kefir grains (comes with personal tutorial on making your own kefir)
Sheetrock finishing (mudding/taping/sanding)
Check out lawn mower before winter storage and snow blower before winter use
Stain back deck (really small back deck 🙂 )
We have been blessed this past year with the generosity of so many. I hope this is helpful for anyone who has been wondering about a way to lend a hand.
This last part of Sandy’s course is not easy – for him or for those who love him. However I cannot help but think of all the wonderful years that we spent along the way to here. This photo that Sarah took near our home in New Hampshire strikes me as metaphorical of Sandy’s life: the tracks symbolizing his straight, true, strong character, and the ever-changing scenery representing the many phases of his career – as student, musician, sound engineer, pastor, real estate agent, music teacher, Apple employee (and of course husband and father). The scenery (or phase) may evolve and change, but the character, the integrity, stays the same throughout. I not only have loved this man for 30+ years, but have admired and respected him. Smart, multi-talented, kind, generous – he has made me feel very secure and very loved and brought me much joy in our journey together.
“Piglet sidled up to Pooh from behind.
“Pooh!” he whispered.
“Nothing,” said Piglet, taking Pooh’s paw. “I just wanted to be sure of you.”
― A.A. Milne, The House at Pooh Corner
That’s sort of me with Sandy, Sandy with me, and both of us with God. We’ve asked a lot of complicated questions in the past year. But really most everything boils down to just being, and being assured that what and who you love is right there with you.
The disease progresses, and we adapt daily to the changes, and face the challenges of staying comfortable. Doing so is made easier with the caring and attentive hospice personnel, along with the love of family and friends. And, the presence of a new member of the household: Tyson! He is our very own (practically, if not officially) therapy dog, who travelled all the way from Colorado with Sarah. Banjo doesn’t quite know what to make of him, but he should warm up eventually. Both of these furry critters are wonderful, sympathetic companions for Sandy throughout the day and night.
We seem to have reached the point of taking the hours as they come, and if they collect into a whole 24, then we’re thankful for another day to be together. For Sandy, it’s mostly sleeping, with a few precious moments of interaction with friends and family. For me, it’s lots of little things: seeing to his needs (which are minimal at this point) and basic household chores (again pretty minimal with such reduced activity). I spend a lot of time holding his hand, even when he’s sleeping. He still gives mine a big squeeze every time.
Sarah and Anna arrived on Sunday, from Colorado and Georgia respectively. Josh and Nicole are driving down from New Hampshire today. Jeff Seward, a dear friend from our San Diego days who now is in Florida, flew up yesterday and we enjoyed some precious fellowship in the afternoon as well as this morning. Along with all these blessings, the past week has brought visits from my niece Chiara and her family, my brother Ted, his wife Mary and daughter Emma, and this weekend we look forward to seeing Sandy’s brother Randy and sister Mandy.
Our hearts are filled with gratitude for all these reunions. It has been Sandy’s primary wish to see all our children again – very much a gift considering the widespread geography. The additional visits from family and friends from out of town, as well as those from wonderful friends here in the area, and our good fortune to have had Aaron close by consistently, have truly made our cup to overflow!
P.S. Of course visits aren’t possible for everyone, and I want to acknowledge all the texts, calls and emails that we have received. Everyone has been so kind and supportive. Special thanks also to Peggy and Niki and Krista and Adley for the amazing food so lovingly prepared.
The last installment recounted the many adjustments we’ve been making in Sandy’s care. They continue to come: the latest being that he is now on a morphine pump, which, on the positive side, means that he doesn’t have to worry about taking pills at certain dosages at certain times. The pain medication is dispensed at regular intervals in the correct amount – foolproof! The other side means that he is paired with a device full time (not bad – about the size of a large scientific calculator), but more seriously, it means that the disease is progressing enough for added palliative measures. During the nurse’s visit yesterday, the conclusion was reached that Sandy’s liver is failing, so while only the Lord knows the measure of time we have together on this earth, experience cautions that we may be approaching our last phase, as it were. (I’m praying for a looooooong approach!) This is certainly not a surprise considering the nature of the disease, but distressing nonetheless.
We are thankful for the year that God has given us together since the diagnosis, and of course for the 30 years that we have been happily married, serving together, raising four amazing children together, building careers and ministries and even buildings together. Through all of it being carried by faith – sometimes strong, sometimes less so, but always there.
We will never rule out the possibility of a miracle. Next to heaven that is our fondest hope. Now does seem to be the right time however, to cherish all the wonderful relationships we’ve experienced by connecting as much as we can through phone calls, emails and welcoming visitors. We are greatly encouraged by our friends and family, and invite such contact as frequently as you (and we) are able.
A lot can happen in two weeks. Which means a lot of adjusting to go with it. For instance, Sandy isn’t typing this – he’s a bit too groggy to make an efficient typist. So we’re collaborating to bring everyone up to speed on the latest.
First things first, which in conversation is often the weather. It has been HOT and STICKY, and right now it’s raining which brings the promise of some cooler air and the chance to enjoy outside again. Yay!
The photos in this post are from this week’s visit with Anna and the grandchildren. It was so wonderful to have Tristan and Madelyn light up the house with their cheerful little selves. It was a landmark for Sandy as he had been looking forward to having them here. The chance to sit with them and just “be” as a family was so meaningful. Our next family visit will be with Sarah in September, so another goal to look forward to. (And then Josh and Nicole’s return from the trail at the end of September… and then Thanksgiving… and then Christmas… I have a truckload of goals for him – GRIN.)
More immediate goals are for pain management, and patience while dealing with the initial fogginess and disorientation as medicines get re-tuned. It’s been a new kind of struggle since being off conventional treatment. Facing new normals. Management as a moving target. Adjusting to changes in the adjustments.
For those of you who have been asking how you can pray for us:
Wisdom for the doctors and nurses and choosing a good treatment plan
The adjustment for Sandy to take the medications he needs (for someone who all his life hasn’t needed such things)
To be “anxious for nothing” (the larger the obstacle, the harder that one gets!)
We are so very thankful for every one of you and your prayers and good wishes at this time. It’s been a difficult period for Sandy lately, and the support we feel from friends and family is an incredible boost to his spirit (and mine!)
It’s been a week since starting with Hospice. I’m glad to have made the choice when I did. Physically, my body has most definitely begun a new chapter in this story, and placing myself in the hands of pain management specialists is turning out to be a good place to rest.
Abdominal and chest pain, loss of appetite, digestion problems, and more have become quite the issues lately, pretty much increasing steadily. I’ve been placed on 24 hour morphine with time release pills (150mg/day), and also with faster acting hits when needed. One of the most difficult side effects of pain meds at this level (combined with pancreatic failure due to the cancer) is the ability to process foods. The past few days we’ve tweaked meds to try and manage that better, but honestly, that is an area still in need of much prayer as the doctors and nurses try to find a mix that works best for me. Still working on that. Due to the mix of issues, I’ve also signed off to refuse any future feeding tubes. I mean really, will any bottled supplement ever compete with Christy’s culinary skills? I think not.
Other side effects… well… I can no longer drive. I’ve been told it just isn’t safe while at this level of sedation. I’m also much more drowsy than I’ve been before and it’s amazing how easy it is to drift from reality to dream-land in just a few moments when the eyes close. There are times here and there when telling the difference between the two is quite the challenge. I suppose I should just take advantage of this strange blur of thoughts & realities and write a movie script or two!! One of them might be a big hit in the psycho-drama genre! I’ve also experienced a few panic episodes recently, probably due to those blurred lines. This has all been a bit odd.
I do have an amazing team of people at Hospice and at home, however, guiding me through these changes, holding my hand each step along the way, and slowly but kindly reminding me that more changes will come. I know they’re watching out for my emotional well-being and that of my family for a journey I’ve spent the last year preparing for. And the lead nurse reminded me in the most gracious and light-hearted way yesterday, that she has far more medication in her little bag than I could ever muster up in pain. It was her way of encouraging me not to be anxious about anything but to focus on life instead. Nurse Kelley is the best!
Speaking of preparing… What a blessing these past ten months have been. We owe God a mountain of gratitude. There are so many others who get diagnosed with the same late-stage pancreatic cancer who had so little time to complete their lives. For me, not only have I been able to maintain a satisfying degree of physical health between chemo cycles, but this has also been an amazing year of healing and restoration emotionally and spiritually. This has been time I really needed to right some wrongs, get old “To-Do’s” crossed off the list, and set my life in order. I think the old “bucket list” is done. Might be time to make a new one to fill the time still at hand!
And even though we’ve moved on from oncological treatments, I want to recognize Dr. Anna and her oncology team at VITA Medical. I do believe that without their help and care, things could have been much worse for me. For a small town clinic, it has always been amazing how right on they’ve been when I’ve sought second opinions from much larger cancer care centers in Boston and Philly. Their care is among the highest available in the medical community and they were always pleasant to work with.
So where does all this leave me? Honestly, I’m not sure yet, but am fully determined to make each day, each week… however long I have… count for something meaningful in God’s sight. Here’s what I’ve learned from the past and what I’ll be focusing on in the days to come.
I confess that since leaving our years of active ministry, my closeness to God has been spotty. Never lost my core faith, but I feel more like the woman clutching to the hem of the Lord’s garment than John who leaned on Jesus’ chest at the last supper. I know clutching still counts, but closeness is better and that’s where I long to return to. Bible reading, prayer, fellowship, reconciliation… these things are all important. And church… well, it’s like family. None are perfect. But living without either is just plain miserable in the end. Community is about staying connected and contributing what you can to the whole. No more excuses that it doesn’t work out. You’re a part of it, so help make it work out. Right? We can all do that in our immediate (or “birth”) family and spiritual family.
I believe the last ten years have had some difficult moments with my children. I mean really, there was a year back a ways when all four of them were teenagers. O.M.G. was that time hard. Now they’re all in their 20’s and things are so much better. For any parents of teens, please let me encourage you to learn from my misses. Love them first, fix them last. Pretty simple. With the time I have left, I choose to focus on love. And thank you kids, for being understanding and patient with me all those years!
In marriage, there just ain’t nuttin’ worth living in discord. The Bible says to esteem others higher than yourself. Showing respect, finding understanding, making sacrifices for the other… This is what makes marriage work. I am so blessed that I can say after nearly 30 years of wedlock, marrying Christy was the best thing to ever happen. She is my angel. My prayer now is that I can communicate that 1000 ways every day!
At the end of today’s list, I am also setting a goal to find as many ways as possible to do activities which focus my mind on life and not looming death. Been struggling with that, but I know it needs to be done. So hanging out with visitors, getting out to do things that CAN be done within my new physical limits, playing piano or working on art, reading… etc. Just looking for things that help my mind focus on good. That’s what’s important.
This is certainly a difficult time for so many of us. Let’s make an agreement to walk through it together with God’s help. So I’m here for you, and it is comforting to know that you’ll be there for me and my family. Maybe, with faith, we can keep things going for a very long time to come!
Yesterday afternoon Christy & I had our first visit from Hospice Care. I must say, they are really good at doing a really difficult job. We were able to get a grasp on the services they offer and then tie that into things that are important for me and our family right now.
First, it is clear that their number one goal is to make sure that I am comfortable and receive whatever care is necessary to stay comfortable regardless of how the disease progresses. They have an amazing nursing and medical team that’s available 24 hours a day and are committed to making things easy for us to manage.
Second, it was assuring to see that they are also available for my whole family for everything from information services, to compassion, and to managing the very practical things that need to be addressed in the coming weeks and months.
Third, it didn’t take long to realize that if I’m not on chemo, this team is much better equipped than my oncologist to manage my medical care in a way that is more targeted to the decisions we’ve already made. For instance, instead of running countless tests that produce more and more lab results, charts, and statistics, their focus is simply on, “How do you feel today, and what can we do about that?” I’m already sensing that this reduces my worry. Since my test results are generally much worse that how I actually feel, I think it will also help keep my mind focused on what’s most important: living and finding joy in each day.
They also reassured us that Hospice is all about receiving proper care. It’s not a path to death, and many people receive Hospice for a while, and then recover and go off their services. There’s a lot of flexibility here.
All in all, we feel quite confident that we’ve made a good decision in contacting them.
Lastly, people often ask what they can do to help me out. The answer is quite simple. Let’s not wish away this valuable time by wanting things to be different than they are. I’ve spent a year researching options in and out of the medical system, and in and out of the country. I’ve had multiple doctors, naturopaths, alternative care specialists, and counselors all come to the same conclusion. Short of an absolute miracle, things aren’t going to change. So while we all have faith that miracles can still happen, this too is completely out of our hands. What we can do, however, is use this time to be close, sit and visit together, and do simple things that show respect, care and compassion. Just as it was in the beginning of this journey, short visits are so important and meaningful. Honestly, nothing sucks more than having terminal cancer, than having terminal cancer and spending many precious hours alone. Companionship is always appreciated.
That’s about it for now. Thanks for listening, and God bless!
It’s been five weeks since my oncologist ordered a test to see if I could try immunotherapy. This is a treatment that essentially helps the body’s immune system fight cancer cells, so there is not the same level of toxicity as with chemotherapy. It has been approved for a small number of cancer treatments, but is now in an experimental stage for other kinds of cancer (like mine). The requirement is that your tumor has a certain structure to it, so before starting the treatment, a sample of the tumor itself has to be sent off for testing.
About two weeks ago, they discovered there wasn’t enough tissue left from my September biopsy to get a good test done, so off for another biopsy I went. And then waited again.
Yesterday my doctor gave me the results. I don’t qualify for the treatment. It was a bit discouraging as I was hoping to have a new option for treatment.
So we press on. Since other test results show a progression of the disease, the next step is to get me hooked up with a Hospice home care team to help out with pain management. That’s beginning to be an issue, so we’re trying some new meds as well as some alternative care products that may help to control the increasing discomfort.
Honestly, it feels like I’ve crossed a somewhat frightening horizon line here. But when I look back over the last year since getting diagnosed, I can’t help but be thankful, instead, for all that God has done. It is always a miracle to be given time. It gives you the freedom to say things that need to be shared, do things that were important to finish, and be with the people who are special in your life. The time spent with family has been precious. And I can’t even begin to express how blessed we’ve been to reunite with ministry friends from New Hampshire and California. Christy and I spent a large part of our lives serving together in church. Reconnecting with old friends was special. Many thanks to everyone who helped make that possible.
So at this point, we hang on to those memories, move forward, and confidently wait for whatever God has next. As many have reminded us, He still works miracles!
So I pulled up my CancerCare website and honestly expected to see that it has been a few months since writing anything. To my surprise, it’s only been a month. But still, I know that’s much too long a gap in communication.
I have two excuses for the delay (well, three).
Believe it or not, it’s been five weeks and I’m still waiting on the results to see if I qualify for immunotherapy. Yes, someone obviously dropped the ball somewhere in getting this processed in a timely manor. But I have no conclusive idea where that blame falls. All I know is the lead oncologist has been quite absent from the office this summer, and from what I hear, has further plans to be gone through July and August. Things just don’t get done with the same urgency and persistence without her there. Lord, I pray they get that worked out. I’ll call on Tuesday and hopefully have some news. Taking longer than a month to run a life critical test is most certainly not acceptable.
The second excuse I have is that for the past few weeks, I’ve been facing increasing discomfort. My last chemotherapy cycle was on May 17th, so it’s been almost seven weeks without it and my body certainly feels the effects of cancer without treatment. I’ve been trying to find a positive and encouraging way to spin this for my blog, but there simply is no way, so I might as well be honest about it. Each day is faced with chest and abdominal pain. Add to that a higher level of fatigue and regular use of opioid pain medications, and you have all the building blocks of wanting to live in exile. Yup, I know, not the best choice… but fighting cancer isn’t always about fighting the disease. Much of the time it’s about fighting the mind as it struggles to stay friendly with your body!
The third reason for not writing is simply the withdrawal part. I’m working on a year of dealing with this now, and a good ten months of being out of work and disconnected from my old life and work associates. Disability is plain and simple a lonely experience. When that gets the best of you, it seems so much easier to give up and pull further back, rather than reach out to stay connected. And frequently, reaching out is met with questions like, “How are you feeling…?” or statements like, “You look great…!” Neither conversation can be completed with a short and simple answer, and long replies are just tiring to give. Are you beginning to see why withdrawal appears as the easiest option?
So I’ll use this blog as the long answer.
Medically speaking, my clinical tests and scans show that the cancer is not improving, my primary tumor is larger than when I was first diagnosed, and the blood clots in my leg, chest and lung are persisting. The good news in all of this, is what the doctor in Boston said when he pointed out that nearly every organ in my body has been affected by this disease, but none had failed… which is why everyone remarks on how great I appear for someone with terminal cancer. And yes, it is a blessing looking better than I should instead of worse than I should! I’ll take it.
Emotionally speaking, I won’t try and cover it up. This has been an extremely fatiguing experience. It is a struggle to not give up in the mind. Months ago, I’d head into a treatment, procedure or test and say, “Lord, I know You can get me through this…” Lately I find myself saying instead, “Lord, it’s really okay if you take me now.”
Spiritually speaking, I tell people all the time that recovering is no longer my chief goal. Being at peace with God is. If He wants to heal this body, awesome! If He wants to take me to heaven, awesome! As long as the path is His, I’m good with that, which means I no longer have to plead, bargain, or pretend. I can accept and rest in faith instead of struggle with the outcome.
A lot of people want me to fight on. I remind them again that I do what is reasonable to stay healthy and equip my body for the best it can do. I still pursue everything from herbs, supplements, oils, teas, to organic foods and “cancer fighting” diets. I still get tested for new medical therapies to see if I qualify for anything that looks promising. What I don’t do is fight the reality that pharmaceutical trials are closed to people like me with poor blood counts. (It’s more important to the pharmaceutical companies to prove their drug works, than to prove it works on really sick people.) I don’t fight the reality that there is no chemotherapy (yet) for pancreatic cancer that can cure the disease. I don’t respond to every claim on the internet about a secret cure for cancer that dates back to the pharos of Egypt.
Instead, I am quite comfortable with the truth that 100% of the current population will die someday. I am quite content that I have had a full life as a professional musician, then another full life as a pastor of a dynamic and meaningful church, then another full life working as a support professional for one of the most innovative tech companies in the history of America. I am also totally blessed to have had nearly 30 years with my wife Christy, to see my children make it to adulthood, to welcome my first two grandchildren into the world, and to be at peace with my brother and sister, able to look back on our lives with joy and satisfaction. My life is already quite full and many folks have passed away without coming close to receiving all that God’s given me. Yes, I’d gladly take another 15 years… but I am also quite content if it is God’s will that this year be my last. No complaints.
So that leaves me waiting on that elusive test result to see if I can try immunotherapy, and holding the hand of my Savior. Oh yes, and getting small glimpses of the Appalachian Trail here in PA with Josh and Nicole; and visiting with Anna, Tristan & Madelyn in August; and seeing Sarah later this summer; and being nearby for Aaron; and cleaning up cat throw-up from Banjo (because that’s how he likes to get attention); and resting in our amazing home; and being close to my wife. Honestly, I think I’m in quite good shape here, despite what all my medical records say!
the capacity to gain an accurate and deep intuitive understanding of a person or thing…(in the sense ‘inner sight, mental vision, wisdom’)
Yesterday I was mulling over the complexities of what it means to empathize with someone when it is impossible to know exactly what they think about or feel exactly what they feel. As good as our relationship as husband and wife is, and as well as we know each other after 30+ years, communication can still be less than perfect, especially when it comes to understanding this crazy journey from the other person’s perspective. I approach things as a dyed in the wool optimist, which can come across to Sandy as ‘living in Fantasyland’, whereas he approaches the same exact issues as a pragmatist, which can come across to me as pessimism. Luckily for us we are usually able to find the humor in our YinYang union, and ultimately know that our differences compliment one another to strengthen our bond. But we’re still distinct people, and until we master the art of the Vulcan mind meld, our thoughts remain unique and separate. Even when shared through conversation, words can only go so far, and part of what we think and who we are remains unknowable to anyone except our Creator. So how to be truly empathetic with someone going through an extraordinarily difficult life event? Perhaps that’s where “insight” comes in – knowledge gained not from our regular senses, but from someplace (or someOne) else. I will never know perfectly what the love of my life is going through, but I hope that whatever natural empathy I possess, along with much prayed for insight to cover my deficiencies, will bring me closer to understanding. This is a shared journey, so it behooves me to be the best possible traveling buddy. I know that I have the best!
This past weekend Christy and I spent visiting family in Massachusetts. Certainly a highlight of the trip was an afternoon out with my sister doing some lobstering! That’s some hard work, and I can’t believe she goes out most days and hauls hundreds of traps! She earns my admiration.
Spending the afternoon out on the ocean and revisiting the waters I grew up in on Cohasset harbor was such a great break away. It brought back so many happy memories from childhood, swimming at the beach, sailing races outside the harbor, fishing for flounder from the channel markers, and summer after summer of growing up in such an amazing little town! It was a great weekend.
The only frustrating part was that Dana Farber Cancer Center in Boston couldn’t schedule me while we were there and set up their consult for me this Friday. So that means driving back up to Boston, visiting the hospital, staying over, and driving back to PA Saturday morning. It will be tons of traffic on Friday, so hopefully the consult will be worthwhile. It is one of the leading cancer centers in the country. I’ll post an update afterwards with whatever they say. We’re hoping for some new ideas…
Also, my oncologist in Bethlehem decided to do some tests to see if I would qualify for a new branch of immunotherapy. This is a newer treatment that has been working well with melanoma and lung cancer. Two weeks ago, there was a conference and they opened it up for stomach cancer, and also decided to allow some trials with patients with other forms of cancer if their tumors match a specific DNA structure (or something like that). So I’m being tested to see if I’m a match or not. Not sure how long that will take to process.
So there are a few logs in the fire and we’ll wait and see if any produce new options.
Thanks again for your prayers.
So today we met with the oncologist at Dana-Farber. The good news is that our doctor in Bethlehem knew all the options for my condition. Of course that means that one of the best cancer centers in the country confirmed that there really are no other options and that pancreatic cancer is still one of those conditions where medical science is still quite limited. So we press on and wait for test results for immunotherapy…