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.

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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).

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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!

Chapter 21: What else can we do to make you feel cared for today?

DonHosp18June2017_WhiteBdCare

A great question

This is the white board question that jumps out at me in Don’s new room at the Duke Medicine Pavilion. My experience dealing with hospitals and medical staff is limited, but I have been impressed by all the caregivers since we got here on Wednesday.

The nurses and nurse assistants have been friendly, knowledgeable and professional – always wearing a smile and eager to help with whatever is needed. Response time/waiting has been minimal. The surgeon, Dr. Z, is no-nonsense while still being pleasant and always treating Don as a whole person and not just a diagnosis. There is also the entourage of 5-6 white coats that come through, usually with the surgeon; they are the Med students & residents. They gather outside the room and share the basics of Don’s case, and Dr. Z will quiz them a little. Then they come in, say hello, and observe as Dr. Z talks with Don.

There is one Med student, Brandon, who works closely with Dr. Z. He is a tall, baby-faced African-American who was in the OR during Don’s procedure and I guess is specifically assigned to Don (and probably a few other patients, I assume). He drops by a few times each day to say hello and check on Don. He is friendly and kind and seems genuinely interested in Don’s progress. He appeared in the new room (neuroscience ward) and was wondering what had happened for Don to land here. We had a chuckle with him when he realized all was well, it was just about bed space. Later that day I was heading to the cafeteria to grab some dinner and I bumped into him on the concourse. He recognized me, we chatted, and I learned that he has just started his 4th year of med school, so will graduate next May. I thanked him for all of his help. He warmly accepted my thanks and seemed to enjoy the interaction with me (i.e. patients/families of patients). I feel sure Brandon will be an excellent doctor one day and also I would be delighted if either of my kids grew up to be like him (caring and attentive)!

A few quick observations from the neuroscience ward: they didn’t have any urinals handy (the little jugs for men to pee in) and I wondered if it’s because most of the patients on that ward have catheters? Just a guess on my part, but this is where they treat patients with brain tumors, strokes or brain injuries, so I’m thinking they might be highly sedated and/or sleeping a lot. This would explain the nurse’s enthusiasm of having a patient like Don who was doing well, talking/answering questions, etc. I also noticed that the NA was not overly friendly, but she seemed to be good at her work. Don said she was very nice, but carried a sour expression on her face. I wondered if she was assigned to this ward b/c working with patients who were less interactive was a better fit for her? Ha ha. I’m weird; I like to think about these things. I did like her t-shirt: “Welcome to 8 West – where we have all the brains!”

Anyway, I don’t know if all hospitals are like this and I hope I don’t have reason to find out. But I can tell you that based on our experience here, Duke is doing things right. I may not ever cheer for their team, but I will gladly compliment their excellent medical care.


Sunday, June 18 – Breakout Day
Don came home today! Sundays at Duke Med are a ghost town so I had to do some maneuvering to get his scripts filled. Maneuvering means walk from the Medicine Pavilion to Duke Hospital to the Children’s Hospital to find the only pharmacy that is open on Sundays. It was no problem, but it is quite the hike! I think I have the floor plan mostly memorized now that we are leaving, of course. And when I got to the pharmacy, they had everything ready but one item, so I had to wait an hour so they could fill that. That gave me time to visit Starbucks and hang out in the Children’s Hospital lobby for a bit (ghost town, totally empty, which was awesome). Meanwhile, Don was eating his breakfast and getting dressed for our big breakout. We made it home about 12:45, just a few minutes after the boys had pulled away for Camp Cherokee (boy scout camp). But they did facetime with Don earlier this morning for Father’s Day, so that is good. I’m glad they were able to visit him in the hospital on Friday and Saturday.

Don is resting comfortably. Last time I checked on him…
Him: I’m trying really hard to turn on the TV.
Me: You want me to get it for you?
Him: No. I keep falling asleep, so I guess it’s not that important.

As we pulled into the driveway, he said, “Let the healing begin.” We are counting our blessings and grateful for all of the family and friends who have sent prayers, calls, texts, food, notes, etc. … we truly feel cared for!

A few pictures from the week, if you hover over the picture you’ll see a caption.

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Grateful for the excellent care provided by Duke. Still gotta show my Tar Heel pride!

Chapter 20: The Big Day

6/14/17 The Big Day
Don was in good spirits as we headed to Duke yesterday. His surgery was scheduled for 2:00, so we needed to get there at Noon. His good spirits helped mine; we are a good team like that. I’m sure he was a little nervous, as was I, but mostly we were ready to get it behind us. At some point during this roller coaster ride he has said, “It seems weird to be talking about a major surgery like this when I feel fine.” Yes. Weird is an understatement. Cancer is crazy like that.

They got him set up in pre-op and then I was able to visit him one last time. While there he showed me his shaved belly and how they had to that because “each hair is a vessel of infection.” He found that entertaining. “Now I’m looking at all the arm hairs and realizing all the vessels of infection I have all over the place!” The nurse laughed. Dr. Z, the surgeon, was there when I got there. He confirmed the planned procedure — look around laparoscopically, remove tumors from liver, hopefully identify and remove primary tumor, which he believed to be in the small bowel. We agreed that sounded good. He figured the procedure would take 3-4 hours.

Then Dr. M, the anesthesiologist, came by. Wow, what he does is incredible. In addition to being under general anesthesia, Don would also have an epidural. This is for pain management after surgery and also to help with recovery. Dr. M described, “Back in the day, when someone had abdominal surgery, anytime the bowels were touched they would freeze up and stop working. Now when we use the epidural, it puts the bowels ‘to sleep’ so they don’t know they are being handled, so they keep on working. This allows for better and quicker recovery. When the patient’s bowels are working after surgery, they can eat and go to the bathroom, and recovery is much better.” Don will have the epidural for as long as he needs it – could be 3 or 4 days. Or maybe more?

So the time came and I gave him a kiss and told him I’d see him in a few hours. They wheeled him to the OR about 1:15. They would need about an hour to get anesthesia going and then they would begin surgery. They did begin about 2:20. My mom and Don’s mom arrived about that time, so we got some lunch in the cafeteria and visited there for a couple of hours. I got the OR update at 4:20, right when they promised (updates every 2 hours) and the update was “procedure is still in progress.” Ha ha, this was funny to me. I was glad to know they are in process, but some info would be nice. But … I felt like no news was probably good news. Carry on! The moms and I moved up to the surgical waiting room, which was very nice. We settled in and chatted some more there. And then we were buzzed with an update at 5:20! I was surprised to hear they were finished and Dr. Z would meet us in the consult room. He kept it to 3 hours. Impressive!

We met Dr. Z in the consult room and he said it went as he expected and Don was doing fine. He looked around laparoscopically, and saw what he believed to be the primary tumor on the lower small bowel (terminal ileum) almost where it meets the colon.  He removed that segment of small bowel, in addition to the ap-

AbdomenAnatomy

Can you find the terminal ileum?

pendix, gallbladder and lymph nodes. Then he removed the tumors from the liver, three spots, which resulted in the loss of about 25% of the liver.  We will get pathology reports on all of this in about a week. It’s great news that he found & removed the primary tumor! This will have a positive impact on Don’s health & longevity.

When I was finally able to see him, he was a little loopy and our chat went like this:

Me: You did great, honey. They got the primary and removed a small portion of bowel with it.
Him: What’s the bad news?
Me: No bad news. They removed the lesions from your liver, so you lost about 25% of your liver. That’s good.
Him: You can tell me the bad news.
Me: No bad news! He did see a few tiny lesions on the liver, but they were deep, so he decided not to mess with them. We can watch them over time.
Him: Really, what’s the bad news?
Me: The only bad news is that you have some pain and you are stuck in this bed for a few days.
Him: Okay, that sounds good.

He made it to his room about 8 pm. He joked/complained to the nurse that the tv screen was smaller than the computer monitor used by the nursing staff. As the nurse was leaving she asked if he needed anything, and he said, “Bring me some tools so I can switch out those screens.” Ha ha. He might be short a few organs now, but he still had his sense of humor. I am grateful.
———————————————————————————————–
6/15/17 The Day After
Today was a good day! Thanks to the epidural he is feeling good. He took a walk around the unit, ate some broth and even peed a few times (eventually)! I learned that hospital time is kinda like the Twilight Zone: goes at a snail’s pace but then the day is over. I’m so proud and happy he is making great progress. Special thanks to Pastor Mark Brainerd who came to visit and pray with us.

Don is eager to see the boys and I hope they can visit tomorrow. At this point I think he will be coming home on Sunday, but that is yet TBD. Again … grateful! Thank you for all of the prayers, texts, facebook messages and support!

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Superman on his first walk down the hall

 

 

Chapter 19: Survivorship

Tonight we had the good fortune of attending the National Cancer Survivors Day celebration at our church. They had a panel of three local oncologists (general, surgical and radiation) who briefly presented on their approach to treating patients and what is new/coming soon in the field of cancer treatment and survival. While very little of what was discussed actually applied to Don’s situation (neuroendocrine is an oddball cancer, for sure!), it was very interesting and hope-filled. And sitting in a room full of cancer survivors is a good thing.

So when I got home I immediately saw a picture in my mind of how I have been feeling about all of this. My coworkers have heard me say “my foggy brain” which is true, but finally I could actually visualize what I mean by foggy. When you, or someone you love, gets a diagnosis like this, it impacts everything. It rocks your world. It seizes you out of the comfort zone (the normally good but stressful, busy comfort zone) and into a new plane of existence. As you can see here in the blog, I also call it the roller coaster ride, but now a little more bumpy.

BrainOnCancer2

My brain before cancer landed in our family

I bet that the picture above is similar to what we would see in your thoughts, too. Lots of balls in the air, mostly good, some challenging, all vying for attention.

BrainOnCancer1

My brain after cancer landed in our family.

It may be hard to see the foggy words, but they say:
Neuroendocrine Cancer —> surgery   —> recovery  —> insurance  —>
    monthly meds  —> symptoms

So this is the fog I am living in. There are probably other foggy sub-bubbles that I did not list here. Don probably has the fog, too, although this blog is my perspective, not his, so I won’t claim to speak for him. And I submit to you that while our fog at this moment is cancer, the fog can be any major stresser or trauma in our lives. I think my therapist friends and social worker friends would confirm this for me.

The opening speaker tonight said, “If you didn’t drop dead when you heard you had cancer, you are a survivor!” Right on.