Chapter 31: Nearing the end of 2017

What a year this has been.
Trump.
Cancer for Don.
Cancer for my friend Elizabeth.
My friend & colleague Dave passing away.
An almost-new colleague passing away.
My friend’s son passing away.
My friend Rene moving away.
My colleague’s brother passing away.
My colleague’s father passing away.
Plus losing the father and grandfather of other friends … these were after long well-lived lives, so sad, indeed, but not as shocking as the others.
I’m not the only one who is ready to shuffle 2017 out the back door.

Perhaps this is normal stuff for someone in midlife like me. I don’t know. I’ve never been in the shoes of a 48-year-old woman before. I don’t really like what I’m seeing in this chapter.

Gratefully, Don is doing well. We are learning the nuances of what it means to live with NETs. Who knew that when you lose your gallbladder your body does not process some foods as it once did?

It breaks my heart that Elizabeth is in so much pain and discomfort. It does not make sense that a 48-year-old woman should have to endure the things that she is enduring. It does not make sense that her loving husband and two beautiful teenage daughters have to see her suffer. They are amazingly strong which I’m sure strengthens and comforts her. But, still, none of this is easy.

And then there is the gratitude.
Gratitude for my husband who makes me laugh everyday.
Gratitude for my sons who relish each new day as theirs for the taking.
Gratitude for my friends who understand me and share my perspective of this crazy world.
Gratitude for my sisters who are only a text away.
Gratitude for my parents and Don’s mom who are available at a moments notice to support and advise.

I guess it really is the roller coaster of life. Ups and Downs. Ebbs and flows. Darkness and light. Rarely do I have one without the other. It’s often hard, but I’ll take it.

Gratitude-is-peaceAL

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Chapter 30: Did you know it’s NET Cancer Awareness Month?

There are so many designated days and months that it’s really hard to know what is what. Only when your life is impacted by “a cause” do you really start paying attention! I’m sure you can relate. And there are so many important causes out there … diseases, social action, legislative action, reasons to show care & compassion. It’s impossible for me to choose just one to rally around. But of course, I am “all heart” as my sister likes to say. (I think it’s a compliment??)

But as luck would have it, NET Cancer chose us. Cancer is random like that, ya know? I’m so pleased to report that Don is doing great. He is feeling good and working like a dog (which in Don’s world means he is feeling good). My man is anything but lazy! But in honor of NET Cancer Awareness month, I wanted to share with you some facts & figures. I hope you never have to deal with this, but you just never know. This info provided by the Neuroendocrine Cancer Connection might be helpful to you or someone you care about.

Carcinoid cancer and related neuroendocrine tumors (NETs) are small, slow growing tumors found mostly in the gastrointestinal system, but can be in other parts of the body such as the pancreas and the lung. Since most of these grow very slowly, compared to other cancers, it usually takes many years before they become sizable or cause symptoms.

Carcinoid tumors and other NETs usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. They can also occur in the pancreas, testes, ovaries, or lungs. Carcinoid tumors can produce an excess of hormonelike substances, such as serotonin, bradykinin, histamine, and prostaglandins. Excess levels of these substances can sometimes result in a diverse set of symptoms called carcinoid syndrome. Other NETs can produce other hormonal substances causing a variety of other syndromes.

When carcinoid tumors occur in the digestive tract or pancreas, the substances they produce are released into a blood vessel that flows directly to the liver (portal vein), where enzymes destroy them. Therefore, carcinoid tumors that originate in the digestive tract generally do not produce symptoms unless the tumors have spread to the liver. The hormones secreted by other NETs, particularly those in the pancreas, do not necessarily require spread to the liver to cause symptoms.

When carcinoid tumors have spread to the liver, the liver is unable to process the substances before they begin circulating throughout the body. Depending on which substances are being released by the tumors, the person will have the various symptoms of carcinoid syndrome, insulinoma syndrome, Zollinger Ellison syndrome, VIPoma syndrome, etc. Carcinoid tumors of the lungs, testes, and ovaries also cause symptoms without having spread, because the substances they produce bypass the liver and can sometimes circulate widely in the bloodstream.

Did you know that just last week Governor Roy Cooper here in North Carolina has made a proclamation recognizing November as NET Cancer Month and 11/10 as NET Cancer Day? So I guess our mysterious little disease is getting some traction. This is good news!

CooperNETs

NC Governor Roy Cooper declares Nov. 10 NET Cancer Awareness Day

Meanwhile, the planet somehow keeps spinning. The boys are off to a good start to the school year. Colin seems happy in his sophomore year and is doing well. AP World History is a challenge, but he’s doing a great job of staying on top of things. Marching band season just ended and now the high school swim team season has begun. Don’t worry, plenty of grass still grows under this kid’s feet … but of course it’s all under his bed where he seems permanently planted when he’s home. LOL. Sam has wrapped up his first season of middle school tackle football (7th & 8th grade). We have enjoyed watching him play … all 20 seconds of the playtime he gets in the games. Ha ha. But that’s how it goes when you are the rookie. And he still loves it! He has done a really good job keeping up with the academic load on top of the athlete stuff – we are proud of him. Fingers crossed this continues into the winter & spring!

So here in 2017 we have learned to roll with the punches. Each of us will have a turn to deal with something challenging. As a friend recently said to me, “It stinks to adult” and there are many days when I agree with this sentiment. But even on the tough days, we still have our faith, our loved ones, our friends, our work, our interests & passions … if not all of those everyday, definitely some of those most days. And it’s those things that help keep us grounded and help keep us focused on all the good that there is, even amidst the bad. I am so grateful for your friendship & support this year – and all the years – but especially this year. It has been my beacon of hope during the darker days. As we launch into the holiday season, be sure to take a moment and enjoy your time with your loved ones and enjoy the music. I especially like how these folks did!

 

Chapter 29: The Latest

I wasn’t sure if I wanted to read it, or if I could muster the courage. But after the fourth good friend – the kind of friends who know you and know what you like and don’t like, and what you can handle, or not – told me I needed to read The Bright Hour by Nina Riggs, I decided to give it a go. To fill you in, The Bright Hour, A Memoir of Living and Dying, is Nina’s personal story of her battle with aggressive breast cancer that ultimately took her life in February 2017. And to add even more meaning to her amazing work, she lived right here in Greensboro – so as she writes about taking her boys to the Greensboro Science Center or her jaunts to the Duke Cancer Center for treatment – it was warmly familiar to me on multiple levels.

Ironically, I first heard of Nina in fall of 2016, when my friend Annie who lives in NYC shared an article on Facebook. It was one of those entries from the Modern Love series the Times does, and was written by Nina. It touched me then but I did not realize the author was in my city. That could mean that I’m a sucker for a good love story but don’t always pay attention to the details.

If you find the time to read her book, you will be glad you did. Her courageous and “real” approach to living and managing the disease, while carefully tending to her marriage, and lovingly tending to her two young boys is exquisite. If you play the Kevin Bacon game (6 degrees of separation, right?) I could win with regards to Nina, because apparently I have a few acquaintances who knew her personally. I love that about Greensboro – small enough to know many here, but big enough to not feel smothered. After reading her book I feel like we could have been friends. That is what makes a book good, don’t you think? Anyway, check it out. You’ll be glad you did.

In our region of Cancerland the news is pretty good. Don had a scan last week at Duke. This was the “fancy scan” – the Gallium 68 Scan – which they say is the best one for NETs patients. It was a bit of an episode before he was finally able to climb into the machine, but he “pushed through” (his words) and was able to get a good scan. Results tell us that they did see the two tiny lesions on his liver that we knew were there; and they also saw a small spot about the size of a penny between his liver and stomach. There is a chance this may not be a lesion, but might be scar tissue from surgery, so that is TBD. But Dr. Morse did not feel that a biopsy was necessary, so we will keep our eyes on this. The next scan, scheduled for December, will tell us more, one way or the other. All in all, this is a good report. We are breathing easy; or as easy as one can breathe when you have this kind of thing on your radar screen all the time. Let’s see – Scale of Breathing Easy – 1 (super easy) to 10 (not easy) – I think we are at a 3 or 4. That’s pretty good.

In her memoir, Nina mentions how a radiation technician taped the word FAITH to her cane, and encouraged Nina to have faith because it will make a difference. Nina said her boys began to refer to her cane as Faith, “Mom, don’t forget Faith!” “Mom, have you lost Faith?” And Nina writes, “Some days I don’t need her at all, some days I depend on her heavily. Faith is what keeps me moving forward.”  Sounds familiar.

TheBrightHour

 

Chapter 28: Back to school, the cost of healthcare and being cancer-free

And just like that we have a 10th grader and a 7th grader. Wow. The summers go by so fast and before you know it we are once again knee-deep in bus schedules, homework, band practice and football practice. I need to heed the DON’T BLINK advice.

Boys_28Aug17

First Day of School 2017

The patient is back to 100% and we are thrilled. One of his big work projects every year is the Wyndham golf tournament (his company provides the signage & graphics) so August was a blip as Don worked long hours leading up to the event. You would not have known he had his abdomen sliced open a mere 6 weeks earlier! He has commented that he really feels good, which I think means he didn’t realize how poorly he was feeling before the diagnosis. Speaking of 6 weeks, another thing worth noting right now are the umpteen medical bills and insurance statements that are rolling in. It looks like this spring and summer brought Don medical care to the tune of about $235,000. We pay a pretty penny for medical insurance through his employer, but I can assure you we have not had to pay anything like that! We are fortunate to have the privilege and ease to acquire decent medical insurance. It’s not cheap (does such a thing exist?) but it’s available to us; unlike so many in our country. Without insurance we could very easily be like thousands of other families in the US who end up filing bankruptcy due to medical bills. This scenario is not a good one. Our healthcare and insurance systems needs to be fixed.

Last week Don saw Dr. Feng, his local oncologist. It was a good visit and she was glad to see the reports from his surgery and time at Duke. He asked what his status was now, since before surgery he was stage 4, so what is it now that the tumor load is gone? She said he could be cancer-free, depending on what his upcoming scan at Duke tells us. We do know that there are two tiny lesions on his liver that the surgeon did not remove, so we will stay on the lookout for those. But if they are tiny and stay tiny, the nature of this disease is that they will not cause any symptoms; which could be considered “cancer-free” or “NED (no evidence of disease).” This is exciting! We are eager for the info that will be revealed from the September scan. As I have mentioned before, we know from online support groups that many neuroendocrine cancer patients live for decades with this disease. Oftentimes those folks are NED for a big chunk of that time. We certainly hope and pray this will be the case for Don. He will most likely resume the monthly sandostatin shots, because in addition to eliminating symptoms they also reduce growth of existing tumors (aka lesions). Thank you for all of the prayers and support as we navigate what is ahead.

I discovered this great song at my 30th reunion (see last blog post) and it fits this chapter we are in. Even more special, it’s written and recorded by some childhood friends (Alan Schaefer, Robert Schaefer and their band Five Star Iris). I’m sorry you cannot hear Alan sing it live in person, but it’s still worth a listen!

Luckiest Man (click to listen)
The first time in your life you were on the other side of a blue light special
You searched the aisles for a sign the bargain of your life to buy the impossible
You reached for the box of faith and everything around it way up high on the shelf
It was there all the time in the corner of your mind you needed a reason to find it

There goes the luckiest man alive – He just bought more time – He just bought the future
There goes the luckiest man alive – He just bought more time – Hey lucky man – Where’d you buy the time?

The light they sent to find you falls behind never leaving your side
Reminded by the fight unexpected prize the greatest gift is another day

We all take life for granted – A shame counting on second chances
Sometimes we get sometimes we don’t unless we pray

 

DonStephLucky

Luckiest Man

Chapter 27: The war on cancer, a reunion, and gratitude

Don has been back to work for two weeks now and continues to feel good. Hooray! I am amazed at how quickly we have fallen back into the old routines of working (sometimes late) and juggling family tasks (taking this kid there, that kid over there, did you pick up some bread? Etc.). It’s almost as if it’s been a “normal” summer.

As I’m sure you’ve heard, Senator John McCain has been diagnosed with an aggressive brain cancer, but did manage to fly to DC this week for a few important votes. With all of this came more talk of the war on cancer and all of those battle-like terms. Fighter. Win the war. Victory. Defeat. These are fine – most of us respond well to the urge to fight this diagnosis – but what if there is no clear victory or no clear defeat? What if someone must deal with this for years? Are they defeated? Are they fighting the entire time? That sounds exhausting to me. What if someone fights this battle for a decade or more, but then dies, are they a loser/failure? In my view, they are still victorious — a survivor — if they continued to live a meaningful life, even with a cancer diagnosis.

Which brings me to state of mind. For us, seizing the positive is the obvious thing to do. As I’ve told many when discussing Don’s situation, “yes, it’s a bummer, but it could be a thousand times worse.” If this is something Don (and our family) will have to manage and deal with for years (might be easy, might be hard, who knows exactly? We’ll see.) we don’t see how being constantly down and out about it does us any good. So it’s there. We are handling it in a proactive manner. We are doing everything we can. Don is feeling good. What else is there? We can live in fear of the What Ifs. Or we can live in awareness of the What We Have Today (feeling good; healthy family; food, clothes and roof over our heads; meaningful work).

A notable moment this week was my 30th high school reunion. Wow, what a time? I’m so glad I went and was able to connect with some really great people. One of my classmates is an oncologist and as I chatted briefly with him about our spring (because how many people really understand what he does every day?) he asked the right questions and then went on to describe the anxiety and stress of living from scan to scan. While I’m sure there is an element of truth to this, this is not really what I wanted to hear. We have committed to seizing the positive and plan to make the most out of every day, month, year we have on this journey. I suspect this was his way of expressing sympathy, but the delivery was poor. I scooted on to the next classmate quickly!

And finally, a few nights ago was the Gratitude Candle moment. I joined my work colleagues and friends for a gathering to say goodbye to a few who are moving on, and to welcome a few new colleagues. After enjoying a casual dinner we gathered to pass around the gratitude candle. As the candle comes to you, you share something you are grateful for. Anne started with the candle – she is one of our core members – adult resident with intellectual/developmental disabilities. She shared she was grateful for her time with our friends who are leaving and was so proud of them. And then the tears started flowing, but she said they were happy tears! Next was Jeff, another core member, and he commented on how grateful he is for the friendships he has at the farm. Core Members Jake and Molly also shared similar thoughts on their friendships and how they will miss their friends. At this point there were lots of tears from the core members and all of us. A few of the sentiments shared included gratitude for: new opportunities, old and new friends, a place where one can stretch and grow, the gift of memories, and the people in this room. Like any organization, we have our challenging moments. But the feeling of love and respect from each person that night is something I won’t forget for a long while.

I hope you will soon find a moment with your gratitude candle.

Click here to learn more about my work at Peacehaven Community Farm.

Chapter 26: Back to Work

Tuesday, July 11, 2017

DonBackToWork

The roller coaster ride isn’t over, but hopefully the things-are-moving-so-fast-I’m-not-sure-which-end-is-up part has subsided for a while. I wanted to share Don’s recent facebook post with you, so you could hear from him personally in case you didn’t see it. We both feel a great sense of relief knowing that this tough chapter is behind us. There might be a few more hard chapters ahead, but for now, we are learning to relish each day. And really, what else do any of us have but today?

 

Chapter 25: A Playlist

Today we celebrated the life of my friend’s son who left us far too soon. The sanctuary was packed, the overflow was packed and I don’t think there was any standing room left. Hundreds of people, young and old, who’s lives have been touched by this young man, or by his family. I met him once but really only know his parents. They are a generous, loving, beautiful family and this is not what they ever imagined. But who imagines things like this? Sometimes being human is not fair. The scriptures shared were exactly what we needed to hear. The words given by his sister were funny and touching. The message spoke of his zest for life, his generosity of spirit, joy and love. And we were challenged to share our gifts – our light – with the world in his memory. 

But more than all of that beauty was the music. I had to come home and document the playlist so I can listen again and again. I hope you’ll feel the same. (For you golden oldies – click the song titles to listen.) 

The music was led by local musician Laurelyn Dossett. You can check her out here (in the jeans) – Leaving Eden  and The River’s Lament 
—————————————————————————————————————————————-

Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.
… 
Matthew 11:28-30, The Message

So, chosen by God for this new life of love, dress in the wardrobe God picked out for you: compassion, kindness, humility, quiet strength, discipline. Be even-tempered, content with second place, quick to forgive an offense. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love. It’s your basic, all-purpose garment. Never be without it.
… Colossians 3:12-14, The Message

Do you think anyone is going to be able to drive a wedge between us and Christ’s love for us? There is no way! Not trouble, not hard times, not hatred, not hunger, not homelessness, not bullying threats, not backstabbing, not even the worst sins listed in Scripture:
They kill us in cold blood because they hate you.
We’re sitting ducks; they pick us off one by one.
None of this fazes us because Jesus loves us. I’m absolutely convinced that nothing—nothing living or dead, angelic or demonic, today or tomorrow, high or low, thinkable or unthinkable—absolutely nothing can get between us and God’s love because of the way that Jesus our Master has embraced us.
… Romans 8:35-39, The Message

 

mtmitchell

View from atop Mt. Mitchell, NC

 

Chapter 24: Post-Op, Up and Away

Tuesday’s Post-Op appointment went well. Don’s staples were removed and now he has the butterfly tape across the incision, which should last another week or so before they start to fall off. He will have a nice 10″ scar that will fade away over time. The day after surgery, while he was in the hospital, he asked the nurses if his chances of making the Dad Bod Calendar were reduced, but they told him he still had a great chance of making the cut. 

In addition to staple removal we met with the surgeon to review the pathology reports. I wish I could I could tell you that “they got it all” and this cancer journey was over. But that is not the m.o. of NETs cancer. We knew this long before surgery.

The surgery was a success, in that Dr. Z was able to remove 3 large tumors from his liver (the biggest about the size of a chicken egg, two others a bit smaller) which resulted in the loss of approximately 20% of his liver.  Did you know that the liver regenerates naturally? They say it will replace this 20% loss in about a month! Wow!

Also removed was a section of his ileum where they found the primary tumor, where the small intestine attaches to the colon. The tumor was only 2 cm in size. Hard to believe something that tiny can cause so much havoc. It was blocking about 30% of his intestine, so would have continued to cause a variety of problems if they had not found it. Hallelujah that bugger is out.

Also removed were 7 regional lymph nodes (4 of them cancerous), the gallbladder and the appendix (both non-cancerous).

The good news is that all of the tumors analyzed are low-grade, which implies that Don’s cancer is not aggressive. This is the most common type of neuroendocrine cancer. As mentioned before, NETs is also known as “slow motion cancer” because the tumors grow very slowly. It could take 12 months to even notice a change in tumor size.

Dr. Z did explain that while “in there” he did spot two or three tiny lesions on the liver (a few millimeters in size). They were deeper in the organ, and he opted to leave them alone, because he felt removing more of the liver could put Don at a greater risk of liver failure. The logic is also that we know the cancer has spread (from ileum to liver) so the nature of this cancer is to watch things over time. If these tiny tumors grow, we will see it on his routine scans and he can always go in for more surgery in the future (hopefully this will not be anytime soon — years away — if at all).

As we left the hospital after the appointment, Don wondered aloud what his status is now. We don’t know the exact terminology, but I would say cancer survivor – one who is living with cancer – just like thousands of other people living with NETs.

So what’s next? He will see Dr. M, the general oncologist at Duke in a couple of weeks to assess things. We are pretty sure he will resume the monthly sandostatin shot, which alleviates any symptoms and also helps to inhibit tumor growth. He is feeling good these days, just as he was before surgery, so we are grateful and hopeful.


As with all moments in life, the good stuff can be accompanied with some hard stuff. We are grieving with a coworker of mine who lost her 25-year-old son yesterday after a tragic bike accident last weekend. We all know there are no guarantees. But even though we know that, it does not alleviate the pain of loss and suffering. Each day we have is a gift. I am slowly learning to acknowledge the daily gifts we have together, knowing that today is really all we have. I suppose this is a lesson we always must keep learning. Prayers for my friends who are suffering today. Gratitude for another day with those that I love.

Flowerbed

Sometimes a few minutes in the flower bed can make all the difference.

Chapter 23: The Human Anatomy of Neuroendocrine Cancer (by Ronny Allen)

In the spirit of Neuroendocrine Cancer Awareness, I want to introduce you to Ronny Allen, a NETs* cancer survivor in the UK. He has been living with this disease for 7 years and has won numerous awards for his excellent blogging on the topic of neuroendocrine cancer. We have learned a lot from him!

The post I’m linking here is especially interesting and informative (and short). I also saw a post this week from the LA NET Patient Conference stating that NETs is the 2nd most common GI cancer behind colorectal cancer (if I can find the exact source, I will link it). So while it’s uncommon, it’s becoming less so.

Anyway, here’s Ronny. Click to read!

*NETs = Neuroendocrine Tumors

NETsfamous

Photo credit: Ronny Allen’s blog

 

Chapter 22: This is what recovery looks like

I’ll copy a few of my latest Facebook posts here for those who do not see them. Then I’ll add some new thoughts below.

June 21
Don has been home since Sunday afternoon and is doing great! Moving around just fine, eating anything, feeling pretty good! Thank you for all of the prayers. He seems to be a pro at this surgery/recovery stuff. I also need to send a big THANK YOU to my parents for being here this last week. They left yesterday morning and were a HUGE HELP with the boys and around the house. Mom is so sweet & amazing to help with some cleaning that I did not get to before the hospital stint began. I’m so lucky to have these wonderful parents in my life! XXOO ❤️

June 21 (later)
We have also been blessed with some AMAZING meals from some thoughtful and generous friends. Here is a pic of tonight’s feast, courtesy of Chef Demetri and Chef Joy. Wow. Pure deliciousness. I have not remembered to get pics of all the food (I know you are happy about that), but I *have* remembered that I want to thank them. XXOO Thanks also to Kathy C (not on fb) and Winston (already got a shout out).

DonJune17-food

Chef Demetri and Chef Joy did not disappoint! Pork souvlaki, spanikopita, salad and cookies.

 

June 22
Hooray! We were able to surprise the boys at camp for family potluck night!

 

I don’t know what recovery looks like for others, but for Don it is quite impressive! I am stunned at how well he is doing. He’s up and moving around, eating well, taking his meds (a cocktail of about 10 meds, including Tylenol, ibuprofen and Miralax, every 6 hours or so). He has some mild pain, but the meds help with that. He reads, watches TV, takes a walk or two in the neighborhood and naps. He tires easily and so far has been good at knowing when to stop and rest.

I have the good fortune of working for a non-profit agency with some amazing people, so they are generous with the opportunity for me to work from home. I have been back & forth from the farm a few times this week, but mostly working from the house to keep an eye on the patient. Today I came home after being at the farm for a few hours and Don told me he had vacuumed the house and wore himself out, so then sat down to rest. That is good. I’m grateful he is paying attention to his body and not over-doing it. He is not supposed to lift anything heavier than a gallon of milk, so I am keeping my Honey Do list kinda short. Ha ha. “We” do need to add the new backsplash to our kitchen project, so I offered to crack open the box of tile, so he can carry them one-by-one and get to work. I don’t think he was keen on that just yet. It’s okay, I am very patient.

We are so touched by the calls, texts, cards, and food from so many. Thank you from the bottom of our hearts!