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

Chapter 9: Disappointing 3/30/17

Today Don had his “5-year follow-up” colonoscopy and they added on an endoscopy for good measure. He was due for this after his first colonoscopy 5 years ago, but after the discovery of NETs, the onco team definitely wanted it done, with hopes that we could find the primary tumor. The plan was the scope would enter “both ends” and identify the primary tumor that started all this mess. (You’ll be pleased to know, as Don was, that they use a different scope per entry. LOL.)

Unfortunately, nothing was spotted that appeared to be a primary tumor. With this disease, (or the version of this disease that Don has) sometimes the primary tumor can be microscopic, and it can start almost anywhere in the GI tract. (We met a patient last weekend whose primary tumor was on the outside of her small intestine. How do you find that?) The primary tumor is the “brains behind the operation” – it’s where the abnormal cell growth begins, and then decides to spread to another location. Oftentimes with NETs, the primary is small and stays small, but the secondary tumor(s) can be large, or multi-size. In  Don’s case, he has a larger tumor (chicken egg size) atop his liver, plus a few smaller lesions also on the liver. And it’s possible there are even smaller “seed-like” tumors that have not been spotted yet, although we hope not. (See earlier post about g-scans.) Welcome to the mysterious world of neuroendocrine cancer. Sigh.

Today’s procedures did find and remove a polyp, but the doc does not think it was anything unusual. There is also a “patchy area” which is unusual at the ileocecal valve (the valve that separates the small and large intestine) which is slightly suspicious. They also biopsied that, so maybe that will turn out to be something. We will get pathology reports in a week or so.

Ever the optimist, Don said, “Well, at least they didn’t find anything in my colon.” Yes … I’ll take that bit of good news. Fingers crossed for an enlightening pathology report.

colonoscopyprep

 

Chapter 8: Three cheers for … 3/27/17

THREE CHEERS for the NorCal CarciNET group (Northern California Carcinoid-NET awareness/support group)! They have some amazing resources online, and I was able to confirm that both Duke and UNC have the g-scan that Don should have done! Hooray! I suspected that the teaching hospitals would have it, but it’s great to have confirmation. It appears that there are only maybe 20-25 places in the country that have this technology and two of them are here in North Carolina. And NC was the first place in the Southeastern US to have them. We learned this weekend that the g-scan program at Moffitt Cancer Center (Tampa, FL) is getting off the ground right now, and it’s likely that there is one (or will soon be one) at LSU in New Orleans (that’s as far as the SE goes; there are several in the northeast and the others are scattered throughout the midwest and west). Of course we will inquire about this when we visit those places in April.

Also, THREE CHEERS for Novartis Universal Co-Pay card! I also discovered this through the NorCal CarciNET group. Novartis is the manufacturer of the monthly shots Don will be getting. This card will allow him to get the shots for a mere $25 co-pay (and Novartis will cover the difference, up to $15,000/year). At this point I have no idea what these things will cost. And thank goodness that we have relatively decent health insurance. (Does decent health insurance exist? That is a topic for another post.) One NET patient online said hers cost $18,000/month, but think that would be the cash payment, I don’t think she pays that out-of-pocket. I know there are numerous support organizations that help cancer patients cover on-going maintenance medications. I’ll unravel that ball of twine soon. But anyway – a $25 co-pay card, even if it only covers a couple of months – sounds good to me.

HooraySeinfeld

Chapter 7: A Good Day in Charlotte or What is a Zebra? 3/25/17

A Good Day in Charlotte or What is a Zebra? 3/25/17

Three weeks ago we had never heard of Neuroendocrine Cancer. Now our heads are exploding. But that is a good thing.

We were lucky to have the chance to attend the Neuroendocrine Cancer Patient Conference in Charlotte today. It was organized by NCAN (Neuroendocrine Cancer Awareness Network), which hosts these conferences around the country. Wow. I’ll spare you the details, but here are the highlights:

  • The couple who founded NCAN has been doing this since 2003. Maryann has been a NET patient for 16 years. She has so much experience and insight and energy, it is amazing.
  • We heard from five physicians* who specialize in this disease: two surgeons, two medical oncologists, and one gastroenterologist. They were knowledgeable and experienced. Abreast of the current diagnostics available, the current treatment available, as well as what’s in clinical trial and what’s coming soon. More than once we heard “…five years ago this would not have been the case…” which was very encouraging. They each anticipate good things ahead in treating and managing this disease. *(Dr. M from Duke, whom we will see in April, was one of the presenters.)
  • We heard from three patients (I think all of them were diagnosed more than 10 years ago) on the importance of patient advocacy.
  • Sitting at our table was a couple who flew from Toronto (!!) to hear these presenters. Brenda was diagnosed about a 1.5 yrs ago, and has had 70% of her liver removed. WOW! She looked great and she and Joe were happy and healthy and doing well. Talk about inspiring.
  • The patient panel polled the crowd and there were many patients in the room who were diagnosed 1, 3, 5, 10, 15+ years ago. They all looked perfectly normal and healthy. It was amazing to see. (Are you getting the picture? This is a bizarre cancer, not your usual cancer treatment/survival story.)
  • Awhile back, NCAN began using the zebra to represent NET patients. The zebra does this well because no two zebra’s stripes are the same and no two NET Cancer patients are the same. The other reason is that in medical school students are taught when hearing hoof beats think horses, but not zebras. In other words, look for the common not the uncommon or rare. Advocacy for this disease is helping the medical community learn to consider the uncommon.
  • As we walked out, we both felt great relief. Relief to know that information is available, relief to meet others who have been where we are, and relief in having a little bit of a clue of what might be ahead. These zebras say it was a good day.

zebra

Photo credits to Mother Nature Network

Special thanks to Don’s mom for hanging out with the boys while we were in Charlotte, and shuttling Colin to swim practice. And to nephew Caleb and niece Caitlin for offering some entertainment. And to a good friend for giving Sam a ride to flag football practice. And also to Rev. Sam Perkins (our youth pastor) for treating the boys to froyo and a good talk later in the afternoon. Colin said it was a fun day and when I asked our Sam how his day was, he said, “Sam P is so cool. He’s like my step-dad.” Me: I think you mean 2nd dad? Sam: Yeah, that’s it. ❤

 

Chapter 6: A good day, 3/24/17

What do you do when you learn of two different specialists, both of whom are highly recommended? You decide to visit both of them.

Early in this journey (I’m not a fan of the word “journey” but I guess it fits) we learned that Dr. M at Duke is the specialist in North Carolina for NETs. So we immediately had Don’s gastroenterologist refer us to him along with referral to Cone Cancer Center in Greensboro. The Duke appt will be on April 18 and has been on the calendar for a while.

Meanwhile, I contacted a friend of mine (a friend from my Chapel Hill days, who is a total overachiever* – a pediatric cardiothoracic surgeon – look it up!) who went to Duke Med School to see what he could learn about Dr. M at Duke. I figured it wouldn’t hurt to see if this friend, Dr. Bob, has any connections at Duke. I’m a big believer in networking. (Rule #1 in networking – Who do you know? Rule #2 – Who do they know?)

So Dr. Bob was busy saving children’s lives in Mexico when he got my email (yes, really) so promised to get back to me in a few days. Later that week he reported that he had spoken with a trusted colleague, also a graduate of Duke Med, who suggested we visit Dr. K at UNC. He even gave me Dr. K’s phone number. It was his opinion that UNC was the best cancer center in the state. This information is enough to get my attention! (Note – no criticism intended towards Duke or their students or their graduates. It is undoubtedly an excellent institution. But you gotta pay attention when two overachievers give you their professional opinion.) They both agreed that when it comes to uncommon diseases, a bigger cancer center (teaching hospital) is a better place to receive care.

At this point I figured I should probably think about the issue that I had not yet given any attention to: insurance/billing. Do we need (another) referral? Can we get a 2nd opinion *and* a 3rd opinion? How does this work? (Of course we can, but what will it cost? Does it matter?) Dr. Bob suggested I call the insurance company for clarification, so I did. The person I spoke with was very helpful and confirmed that we do not need any referrals and both the UNC doc and the Duke doc are in-network. (In-network are magical words for cancer patients and for any patients who are dealing with chronic illness. See? I am learning.)

Next step was to call Dr. K at UNC. Susie answered the phone there and she was amazing. I explained the situation, she asked the right questions and scheduled our appointment for April 10! She explained that she has worked there a long time, and could answer any questions, and if she didn’t know the answers, she would find the right person with the answers. She will call Cone and our local docs to gather all the scans, labs, and reports, so Dr. K has it all handy. “I’ll get those for you, Ms. Chandler, you have enough to worry about.” I love that, don’t you? Confidence, comfort, assuredness. I have a good feeling about this.

So … busy couple of weeks ahead. Thur 3/30 – colonoscopy/endoscopy; Fri 3/31 – first administration of monthly shot; week of 4/3 and 4/10- no medical stuff; Tue 4/18 – visit to Dr. M/Duke; Mon 4/24 – visit to Dr. K/UNC. Cross your fingers for us!

Oh, and I can’t forget, Sun 4/23 – the Peacehaven Farm Walk! Sure to be a fun day at the farm. I am so grateful this is our 3rd time around for this event. The roller coaster ride continues.

*Some people are meant to be overachievers! God bless them. They are following their calling and making the world better.

bobheartcare

Pictured: a bunch of overachievers saving a child’s life. #internationalheartcare