Chapter 17: Commencement

It’s graduation season, as you know. I have friends whose children are graduating from HS and college and to observe their experience from out here has been scary and fun. We’ll be there soon enough – Colin is a rising HS sophomore – and I’m doing my best to learn from these friends so that when our turn comes around we are ready.

A favorite part of this season is all of the commencement speeches that start floating around the internet. I’m sure you’ve seen a few good ones. Of course I admit that it’s way more fun watching a short commencement speech from my living room, rather than having to sit through those long ceremonies! But anyway, here is a favorite that hit my screen this week and I think it’s worth sharing. Enjoy for 11 minutes from your living room!

If you aren’t familiar with Greg Boyle, I highly recommend his book Tattoos on the Heart. It’s a breathtaking, beautiful memoir about his work with the homies (gang members in LA).

Chapter 16: Normal days

March and April were crazy and May has been a blink. It is now T-11 school days until school is out for the boys; and T-18 days until surgery. I’m not exactly sure where all the time has gone, but I can tell you that they have been pretty normal days, and for that I’m thankful.

Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. — Mary Jean Iron

Tonight was a fun night with friends at the pool – opening night! The pool is my happy place. There is nothing better than being surrounded by the friends who love you and whom you love. Adult beverages are a nice perk, too.

Tomorrow we are headed to a quick weekend at North Myrtle Beach, SC. The weather should be great and I can hardly wait to get my toes in the sand. Summer is coming!

I’ve had a few realizations the last few weeks. First – Don is a cancer survivor. Did you know that anyone living with cancer is a survivor? Enough of this “cancer patient” stuff. We are all patients of some kind. A survivor is someone who is living through the normal days and the rough days; someone who is pushing through to the other side. You will not hear me say cancer patient again. When you bump into other friends or family members who are in the throes of this disease reassure them that they are survivors!

Secondly – We have amazing friends. I already knew this, but I am so very touched by the friends who have committed to bringing us meals during Don’s recovery. When I gently informed him of this development, he said, “probably bringing food I cannot eat.” That may be true, we shall see. But I reminded him that if I don’t have to think about dinner, I can focus on taking care of him, and the children will still be fed! Of course he agreed and is thankful. I may need to stock up on Ensure and make sure the blender is working for his sake. No biggie.

The pre-op appointment is Tuesday, May 30 – just a few days away. I know we are both eager to go and learn more about what he will be facing in surgery. And I am anxious to find out what to expect when he is home for recovery. I foresee a few more blog posts in the near future.

It’s easy to not notice the normal days. Maybe we spend a little too much time looking forward to The Big Great Thing Coming Up and don’t appreciate the normal days? I know I’m guilty of this. The normal days where it may be close, but the kids get to the bus on time. The normal days where we can tick down the To Do List at work without too many interruptions. The normal days where we wake up a little tired, but healthy, and go to bed a little too late. The normal days where the kids bicker over stupid stuff but we still have three meals, cabinets full of snack options, drawers full of clothes, and a roof over our heads. The special days are great, but the normal days are where we live our lives. We are so very lucky to have normal days.

GVPbluewater

 

 

Chapter 15: We have a date

Don and his new BFF (the Duke scheduling lady) have planned his surgery for Wed, June 14. For the last week or so she would call his office and miss him; he would call her back and miss her; this went on and on, with little bits of messages left for each other, until finally they traded cell phone numbers and were able to connect. I think they will meet for coffee soon! LOL.

A pre-op appointment is scheduled for May 30. Originally on that day he was scheduled for the G-scan at Duke, but with surgery around the corner the scan will be postponed until a few months after his surgery. The Duke oncology team actually called Don this week to tell him Dr. Morse feels like they will see everything there is to see when they open him up, so no need for the scan before the surgery. It makes more sense to do it after, as the beginning of Don’s on-going check-ups and maintenance. This sounds good to us and I was delighted to know they were closely reviewing his case.

Don is feeling really good these days. Which begs the looming question – will surgery make things better or worse? I am learning that with cancer one big aspect of treatment is “how are you feeling today?” Paying attention to how the patient feels physically is an important consideration that needs to go along with the other aspects – is treatment working? Are the tumors going away/getting smaller? And of course, these questions mean different things for patients dealing with neuroendocrine cancer compared to other cancers. I decided to check in with our friend Brenda in Canada (see my Zebra post from March) to get her perspective. Almost 2 years ago she was diagnosed with Neuroendocrine Cancer and had 75% of her liver removed plus a section of her bowel (location of primary tumor). When we met her in March, she was the epitome of health! When I checked in with her this week, she described the chance she had recently to hear Dr. Liu speak (he is a rock star doctor in the neuroendocrine cancer world) and at the beginning of his talk he said the first three steps of treatment are:
1. Cut it out
2. Cut it out
3. Cut it out….
And how surgery is truly the best first line to progression free survival. So….we feel good about this decision.

Brenda did say eating and digestive issues can be a challenge following surgery, but for her things were fine after a couple of months. That is what we are hoping & expecting for Don!

Summer for the boys begins on June 12. Surgery date is June 14. Boy Scout Camp is June 18 – 24. Don will be in the hospital for about a week (June 14-20ish), and then home from work another 3-4 weeks. No rest for the weary around here! Although we will make sure Don gets plenty of rest starting June 14. We appreciate your thoughts & prayers as we take this next step.

June14

Chapter 14: You can’t always get what you want, but you get what you need

May Day 2017

We pulled out of the driveway about 9:30 to head to Chapel Hill. It was finally time for our 3rd opinion on this roller coaster ride – this time with Dr. K. at the North Carolina Cancer Hospital.

The UNC Hospital complex is huge, with tons of traffic, signs and construction. The casinos and cancer center question came to mind, once again. We got there easy enough, but it is quite a sight to see. Valet parking is a must. According to the plaque in the lobby, the NC Cancer Hospital opened in 2009 – so it is not yet 10 years old (new facility; long-established cancer treatment center). When I was a student at UNC I remember all the construction around the hospital area — I tried to avoid it at all costs! This newest building was completed since my time there and even now there is a new building coming up. Healthcare is big business and North Carolinians are lucky to have a resource like this – the state’s only public cancer hospital – available to them.

We checked in and were directed to the surgical oncology waiting room, a couple of floors up. Upon checking in there, the person at the desk asked if we had the our intake papers, which we explained we had emailed them to Susie a few weeks ago. We waited there maybe 30 minutes and were then shown to an examination room where a support staff person went over the basics and opened Don’s patient file in the system on the computer there in the room. She again asked about our intake papers and we gave her the same answer. (Hhhmmm…do they have Don’s records?) Then she finished her part and said the PA would be with us shortly.

So we waited. And waited. After about an hour I went to the bathroom, because surely the PA would show up while I was out of the room, right? I returned and she did appear 15 minutes later. She reviewed her understanding of Don’s case and asked him to chime in with clarification, questions or comments. She was great – knowledgeable, friendly and professional. She explained to us that she had reviewed his reports of lab work, tests and scans from the last few months and after leaving us she and Dr. K would look at the actual scans together, before they both came back to speak with us. We found this a little unusual – they hadn’t looked at the scans yet? The experience at Cone Cancer Center in Greensboro was seamless: when we arrived, we met with the entire cancer team one-by-one, and they had already reviewed all of Don’s scans and reports at the tumor board a few days prior. And at Duke, it was a similar situation – all of the medical team had already reviewed the records before Don arrived. Different processes in different programs, I guess.

About 30 minutes later PA returned with Dr. K. He was friendly, kind and straightforward. He talked a bit about carcinoid cancer (he did not use the newer, preferred term – neuroendocrine tumors) and metastatic disease, and how metastasis with this disease is different from other cancers. He asked Don about symptoms, how he was feeling, and how the sandostatin injections were working (they are doing a great job of helping him feel better/eliminating symptoms). He said good things about Dr. M and Dr. Z, the oncology team Don met at Duke. He talked some about the elusive primary tumor and explained that about 40% of the time the primary tumor is not found in NETs patients. But while doing the liver surgery, it would be easy to palpate the small bowel to look for the primary, because most likely that is where it is. Dr. K also agreed that Don should proceed with the scheduled scan at Duke (May 30) because it could offer insight that would be helpful prior to surgery. Although he said the Cone suggestion to wait 3-6 months for surgery was not necessarily wrong, Dr. K agreed with the Duke approach – go ahead with surgery sooner than later. Don is young, healthy, there is no significant reason to wait. Don is a good candidate for this kind of surgery on his liver (hepatic resection of left lobe; ablation of lesion/hepatic resection on right lobe) and if he were the first Dr. consulting with Don, he would recommend moving forward with surgery. He ended our time acknowledging that we needed to decide what next steps to take, and where, and they would be able to schedule surgery and offer Don treatment at UNC whenever we were ready. It was a valuable visit to Chapel Hill because it helped clarify next steps on the path.

We understand that we can’t always get what we want: a straightforward answer about perfect timing for surgery … easily finding the primary tumor … being cancer-free.

But we can get what we need: experienced, knowledgeable doctors … surgery to reduce liver tumor load … a gut feeling on what’s next.

If things go as we hope, Don will have surgery at Duke in mid-June. Stay tuned.

UNCCancerHospLobby

Pictured: NC Cancer Hospital, Chapel Hill, NC, photo credit to unclineberger.org/ about/nccancerhospital.

 

Chapter 13: Surely only one 4/23/17

One year ago tomorrow my sister’s husband Brian suffered a traumatic brain injury from a fainting spell at home. I awoke that morning to numerous missed calls and texts from both of my sisters in FL that he was in the trauma unit at UF Shands Hospital in Jacksonville fighting for his life.

And that morning I had to get to the farm for our 2nd annual Peacehaven Farm Walk – a fundraising event I was in charge of. As they say, “the show must go on,” and there was not much I could do for Brian being 500 miles away. I managed to keep it together and lean on my amazing coworkers so we could pull it all off, checking text messages off and on all day. It was a beautiful day at the farm and the event was a success.

Many of you followed along while Brian was in ICU. After two brain surgeries, he was in a coma for 10 days, surely the scariest days our family has ever experienced. Storming – erratic body temps, erratic heart rates, and violent shivering – became the scary norm for a week or so as his brain and body worked on overtime to heal. Miraculously, he came out of his coma on Day 11, and his recovery from that day forward was on supersonic speed. Today he is perfectly healthy – minus hearing in his left ear (site of impact) and minus the ability to taste and smell. Cognitively he is back. Emotionally he is back. Physically he is back. If you don’t believe in miracles, let me tell you more about Brian’s story. The power of prayer, along with the power of modern medicine, along with the power of God is the stuff of miracles!

I was able to visit Brian, my sister Leslie, and other beloved family members, the weekend after the accident. Brian looked like this monster of a man — Superman, really — as he lay in the ICU bed. (He is a Marine Corps Veteran, a triathlete, and 6’5″, so of course he looked like Superman!) Leslie was holding up as best as one could expect. They had a 15-year-old and a 2-year-old at home, boys needing their mom and dad. He didn’t know I was there (although he now tells a story about a dream he had while in ICU that includes North Carolina … hhhmmm), but I was glad to be with Leslie and the others who were gathered and pulling for him. While at my parent’s house, I remember talking to them and saying, “Well, statistically, brain injuries like this aren’t horribly common, so surely this is the only one we’ll have in our family.” God knows, I hope and pray that is true.

And now, here we sit one year later, dealing with a cancer diagnosis in our family. I wish I could say “surely, this will be the only one in our family” but it’s actually #2 in my immediate family, as my mom is a breast cancer survivor. The American Cancer Society reports that 1 in every 2 American men will have a cancer diagnosis in their lifetime; and 1 in every 3 American women. So I am surmising that this is just the stuff of life. The dips, rises and falls of the roller coaster are just part of it. An accident, an injury, a disease, a trauma, despair, loss, death … these are all on the menu for us humans. The menu awaits and usually we don’t get to choose, we are just served up one or more of the options along our ride. If we’re lucky, it’s only one.

As Don and I talked before his biopsy procedure on March 1, when we really had no idea what could be ahead, I said, “Well, whatever it is, we can handle it. It won’t be as scary as what Brian went through.” That is not to diminish anything we had ahead, but to remind us that our people have been through tough times before and we can make it through tough times again. That’s what we do as humans and as a family. We support each other and hold hands when the ride gets bumpy.

Cheers to Brian and Leslie! One year later – a picture of health with many more years ahead. Hallelujah!

BrianSchaefersGalaNightJan2017

Pictured: Brave people who are no strangers to scary moments a.k.a. our people. Reese, Dan, Carol, Brian, Leslie, Becky, Josh. This was at the A Night for Heroes gala in January, the annual event that benefits UF Health TraumaOne, where Brian was the 2017 patient honoree. You can read more about Brian’s story here.

Chapter 12: Casinos and Cancer Centers 4/19/17

Chapter 12: Casinos and Cancer Centers 4/19/17

Yesterday was the visit to Duke Cancer Center. It had been on our calendar for over a month, so to say we were ready is an understatement. We like info and answers, and this was Step Two towards some kind of longer-term plan. (Not all cancer patients can think about a “longer-term plan” … you can bet we are counting our blessings.)

Unfortunately, Mother Nature had different plans for me. I was struck with the stomach bug on Monday about 5pm. Came on fast and hard. Ugh. I must have caught it from Sam, who had to deal with it Saturday night & Sunday (Easter!). Poor fella. I do not remember the last time I was that sick. It was not fun. But, thankfully, I was back to the land of the living in about 24 hours, and today (48 hours later) I’m fine. Needless to say, I missed the Duke field trip. Luckily, Don’s mom was free, so she joined him. I feel like it’s always good to have a 2nd pair of ears to help with the listening. Expecting any patient to remember all the info is a lot to ask!

Although I could not be there in-person, Dr. M at Duke suggested they include me by phone, which was great. I laid in the bed listening while he spoke with Don about the situation and the options. Here are the key takeaways:

  • Dr. M sees 1 or 2 NET patient consults/week. These are one-time visits who seek his 2nd opinion but don’t return for regular care with him. (Could mean they are happy with their local providers who are probably not in Durham; does not necessarily mean they were unhappy with him.)
  • Dr. M sees about 120 NET cases/year. These are cases he is actively involved with for regular care & management. Please note the big difference between this and the 20-30 cases/year at Cone here in Greensboro. Wow. (And the big case # difference between NET patients versus breast or lung cancer patients. The NET patients really are zebras!)
  • He feels like we have taken the right first step with Dr. F in Greensboro by establishing the monthly doses of Sandostatin. He thinks that should continue.
  • He asked Don to think about any notable reactions or change in how he was feeling the last few years. Don commented that maybe about 2 years ago he noticed a new reaction when he ate fatty foods (often fast food). He would not feel well immediately after, so stopped eating those foods. In hindsight, we now know that was the beginning of the flushing symptom of this disease. Dr. M noted that this could indicate when the secondary tumors were established (i.e. metastasized to the liver maybe about 2 years ago). Flushing is usually caused by the secondary tumors, not the primary. Remember these are slow-growing tumors, so it’s hard to know exactly when things started and when they spread. And in some cases like ours, hard to know where it started!
  • As he evaluated Don’s scans, he observed three tumors on the liver. (We knew this, no surprise.) He felt like doing a liver resection would probably be worthwhile. This would be a surgical procedure that removed most (hopefully 70-90%) of the tumors, which often results in higher quality of life and longevity for patients. It is not possible to remove 100% of these kind of tumors … they tend to be scattered throughout. 70-90% tumor removal has been proven in clinical trials to make a difference for the patient.
  • He also mentioned the fancy scans, which I was hoping he would. Duke has an octreoscan (one step above the scan here in Gboro) and it is often utilized. He felt it probably would not give us a whole lot more info than the scans Don has already had. Duke also has the G-scan (the newest, latest & greatest diagnostic tool), and they do maybe 2 G-scans per week. Wow, only about 100 per year! Think of all of the MRIs and CT scans that are done … and this one is only used twice/week!? He said we could do it (pending insurance approval & schedule) and it might give us some more diagnostic info (i.e. are there more tumors in there that are not showing up on the regular scans? Will it spot the pesky primary tumor that has been elusive so far?).
  • After meeting with Dr. M, our call was ended, and Don later had the chance to meet with Dr. S, who is on the liver surgical team. Dr. S spoke confidently with Don about doing the surgery. He could go in, debulk the tumors on the liver and while in there also look for the primary. When timeline came up, he said it could be scheduled in 4-6 weeks. This was much sooner than indicated by Dr. F in Greensboro! It’s not that it is an emergency, it’s just that Dr. S doesn’t see any reason to wait 3-6 months, like Dr. F indicated. Don felt good about this.
  • This is a good time to make note of the slightly different approaches from the docs we have seen so far. One doc says surgery is no rush, 3-6 months is fine. Another doc says we can schedule surgery in 4-6 weeks, why wait? I don’t think either of these answers are wrong. Each doc has her/his own approach — some are more aggressive, some are more cautious. What feels right for Don? For us? That is TBD.
  • Next steps:
    • At Duke, our next steps are to schedule the G-scan, and from there we will probably schedule a liver surgery. Could be June or July.
    • We have the UNC appt on May 1. (It was bumped from 4/24 to 5/1.) It will be interesting to see what Dr. K has to say.
    • After we hear from Dr. K at UNC, we will make a decision about where Don should anchor his care: Duke, UNC or Cone? I think we are leaning towards Duke or UNC, because they have more experience with this disease. But luckily, he can continue his monthly shots here at Cone, and the Cone team can be guided by the teaching hospital team (most likely).

When Don got home from Duke I asked him about the trip, maneuvering the medical center, parking (tip: valet is the way to go), etc. He said “That place is unbelievable. It’s like a cathedral. You know, it reminds me of a casino! All kinds of people, all ages of people, headed in and out, in a huge and impressive facility.” We laughed about that a bit. But it makes you go hmmm, doesn’t it? We have spent our share of money at casinos over the years (the amount we knew we could spend on entertainment) and we would always comment, “You know this place isn’t built on the winners.” Do Casinos build extravagant facilities to attract customers? (Of course they do.) Do medical centers build amazing facilities to attract patients? I think this speaks volumes about our consumeristic first-world economy. What do you think?

Whatever the answer is to that question … I remain grateful for top-notch medical care in our area. DukeCCtrAtrium

Pictured: Duke Cancer Center Atrium, photo credit dukephotography.photoshelter.com

Chapter 11b: The Invitation

It doesn’t interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart’s longing.

It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life’s betrayals or have become shrivelled and closed from fear of further pain.

I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn’t interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, ‘Yes.’

It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

— by Oriah Mountain Dreamer

invitation

Chapter 11a: Time

Time by John Lucas

My heart has known the winters
And my feet have known the snow
But mine eyes have seen the glory
Of a seed begin to grow
There is a time to uproot, darling
But most days just hold on tight
For there’s a time for darkness, honey
But dawn will always beat the night
Sometimes death will come calling
When you’ve been good and warned
And other times its cold hands will cradle
Dreams yet to be born

There is a time to dance on sorrow
And a time to kiss her cheek
There is a time to mourn in silence
But justice aches to hear you speak

And I don’t know the end, or tomorrow’s story
But I have found the one who gives me rest
And I will make my bed in His promises
For He holds true when nothing’s left…When nothing’s left

There is a time when laughter will echo
Through your halls of peace
But war is known to change your locks
And carry off the family keys

There is a time for healing and pain
A time for drought and a time for rain
There is a time for everything
Until we crown the risen King…Until we crown the risen King

And I don’t know the end, or tomorrow’s story
But I have found the one who gives me rest
And I will make my bed in His promises
For He holds true when nothing’s left…When nothing’s left

So crown Him in your mourning
And crown Him in your laughter
And crown Him when it all turns dark

Crown Him when you bury
And crown Him when you marry
And crown Him when your faith finds a spark

Crown Him for He’s faithful
And crown Him for He’s worthy
And crown Him for He is good

Crown Him for His promises
Cut through the blindness
Of children that have barely understood

The beauty that has come
And the beauty yet to come
And the beauty that is yours and that is mine
And that death produces life
And that we are made alive
By the King who paints beauty with time
By the King who paints beauty with time
By the King who paints beauty with time

And I don’t know the end, or tomorrow’s story
But I have found the one who gives me rest
And I will make my bed in His promises
For He holds true when nothing’s left…When nothing’s left

https://johnlucas.bandcamp.com/track/time

StopWatches

credits

from Promised Land, released May 15, 2015
Written by John Lucas Kovasckitz. Produced and engineered by Everett Hardin. Recorded in Harvest House Studio in Boone, NC. Mastered by Joey Diehl at War Height Audio.John Lucas Kovasckitz: Acoustic guitars, vocals
Benjamin James Roberts: Piano, vocals
Erin Deuel: Vocals
Josh Roberts: Bass
Everett Hardin: Cello
Caroline Hardin: Violin

Chapter 11: The needle, the first time 3/31/17

Today Don had his first Sandostatin shot. Thank goodness, he said it was no biggie. He’ll go back at the end of April – they now will be happening every 30 days.

He also had a good chat with Dr. F, the oncologist. She agreed that it sounded like the colonoscopy and endoscopy did not find the primary tumor, but seemed to imply that was not a huge deal. Next step is to do another CT on the small bowel, even more close up than before, to see if they can find it.

Right now it sounds like she is not inclined to do any surgery on his liver (removing or debulking the NETs); but would recommend surgery on his bowel if they find the primary. As they spoke about this, he asked if they needed to schedule surgery quickly after finding it (4-6 weeks?). She said no. These tumors are very slow-growing – it can take 12 months to even see a noticeable size difference – so she said he could schedule it at his convenience; even 3-6 months would be fine.

This is all theoretical for now. But gives us some relief. So life goes on. We watch and wait.

Life really does go on. That is great.

dogwoodpink