Chapter 18: Pre-Op Appointment – COMPLETE

Today I had the chance to see the Duke Cancer Center in person. It is quite a place. The valet parking was again the golden ticket and it was 3-rows deep with parked cars! This place is very busy!

This time we were in the Morris Building which is where they have different clinics. We had to report to Clinic 2D – Pre-Anesthesia Testing Clinic. This is where they make sure those heading into surgery soon are “as physically safe as possible and prepared for surgery.” At check-in Don charmed the receptionist, like he always likes to do, by telling jokes. This time he replied “I have never heard of her” when she asked if Stephanie was his emergency contact. She laughed and told him he might get beat up by me on the way home if he kept that up. Don has a wonderful way of using humor to put people at ease. I’m sure the staff there see lots of people all day long who are probably sick, exhausted, scared or any combination of those. Based on my observations, the staff appreciate it when a visitor (patient or family member) can lighten things up a bit. And Don is great at knowing when it is appropriate, or not. I love this about him.

They were running an hour behind, but what do you expect at a 2:30 pm appointment? I remember learning the hard way during pre-natal visits — morning appointments are quick, afternoon appointments are slow! So we went to the food court for a late lunch and killed some time. I even went into the Duke Bookstore to explore parking pass options. YOU KNOW THIS TAR HEEL DID NOT BUY ANYTHING IN THE STORE! I am a big fan of excellent medical care, but I do have my limits!

HeelsvDukeRivalry

Eventually it was our turn and we met with a couple of RNs and PA who checked the following with Don: vitals, current pain (none), gave him eating/bathing instructions for surgery day, physical exam, review of meds & medical history, signing of anesthesia consent, labs (apparently you have not had labs unless they are done there) and they gave him an EKG — everything looks good.

When Mary Ann the PA greeted us, the first thing she said was, “You need to know that I had a close friend who had this same surgery with this same surgeon last year – and you are in great hands!” She didn’t have to tell us that. But I’m glad she did. We already felt like we were at the right place, but that was even more reassuring. We learned that he will most likely be in the hospital for 5 days; or maybe less, if his recovery is good and post-op pain is manageable. She described the procedure a bit — if it is laparoscopic the pain will be lower and recovery quicker, if its full incision, the pain will be more intense and recovery slower. At this point, we are pretty sure the surgeon will start laparoscopically to “look around” but most likely will end up doing an incision to complete the tumor reduction/liver resection as needed. Don will get an epidural which will numb his torso in all the right places, which is good. Afterwards he and I can compare epidural stories, since I had two of them, one for each c-section. He was able to crack a few jokes about the urinary catheter (what man is not worried about that?) which kept us all smiling.

Don will get a call the day before surgery to confirm what time we need to arrive on the 14th. If he’s the first case of the day, we will have to arrive at 6:30 am. Oy. I did not get info about what he will need at home when he is discharged, because I realized that we need to get on the other side of surgery to know exactly what he will need. My parents will be here that week to stay home with the boys while I drive to & from Durham each day. They will bring the boys to visit a day or so after surgery plus drive them around to swim practices and other commitments. Anyway, I think we are as ready as we can be for the big day.

Special thanks to the D family for taking Sam to dinner & football practice tonight while we were tangled up in Durham, and to my friends S and L who were on standby, ready to give Colin a ride home from his driving lesson. Turns out we made it back right on time to pick him up. Yes – I said driving lesson! Yes – we have that insanity on our horizon, as well. The instructor was very kind and told us what a polite young man Colin was, and also that he did just fine behind the wheel. So, please cross your fingers for us, we need good luck on several fronts! And this is why we know it takes a village… We are so grateful for our village. XXOO

 

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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.

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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.