Sandra Sunshine

 

Prologue: The Heaven family is blessed with many family and friends. In the past, we have relied on Blogger to keep everyone informed of our progress whenever one of us has been hospitalized. If you were not aware, here are links to our previous experiences. 

Lauren's brain surgery and recovery: https://heaveninphiladelphia.blogspot.com/

Spencer and Jessica's cancer battles: https://thecontinuumproject.blogspot.com/

Keep in mind that they post the latest first, so if you want to start at the beginning, you have to go to the end? Anyway... here we go again.

Feel free to share this blog, that's what its for. I will be updating it regularly. 

Our story so far: It all started with bloodwork. Sandra and I had our annual physicals in mid-October and Sandra's came back with elevated blood levels. The doctor said to wait, and let's get a second reading in a month. Early in November, Sandra started to have upset stomach, weight loss and began to look a little jaundiced. Sandra started to do some research on her own (Dr. Google) and felt that something was wrong so she scheduled a follow up doctor's appointment for mid-November. The day before our appointment, we got the second set of bloodwork back and there were about 5 different levels that were elevated. When we went to the Emergency Department at Penn, a CT scan was done and they said we would be admitted that Tuesday, possibly with a malignancy, maybe in the gallbladder. 

The next day (Wednesday) an MRI was done and it was confirmed that she had a mass in or around her pancreas that was constricting her bile duct and causing the jaundice. An ERCP procedure (endoscopy) was scheduled for the next day to insert a stent into the bile duct and do a needle biopsy of the mass. The stent was successful, as it opened the bile duct, her jaundice started to subside and her bilirubin levels were coming down. The biopsy was inconclusive. The mass is only 3/4" square but it is diffuse, and it's hard to capture cancer cells with a needle biopsy. 

Diffuse vs Concentrated tumors

We are lucky because both Jessica and Lauren work in the Abramson Cancer Center at Penn. Jess is a physician assistant and Lauren an administrator, both in the oncology department. They were able to arrange meetings right away with the best GI surgeon and Oncologist available. We met with them both on Thursday.

Diagnosis flow chart

We met with our GI surgeon, Dr. Ken Lee, and he explained where we were in the diagnosis process. He said we fell in the left column, the 10-15% of patients whose cancer is resectable, the best outcome. 55% of patients are in the right column, metastatic, which is the worst diagnosis. The other 30-35% are either borderline resectable or locally advanced. Being in the resectable group, the next decision was whether to do surgery then chemotherapy or chemotherapy then surgery. That decision hinged on her pancreatic cancer marker levels, known as CA 19-9. Prior to our meeting, Sandra's markers were +500. The normal range is <37 but can go as high as 3,000. Dr. Lee noted however, that the jaundice would skew the CA 19-9 levels. Bloodwork done at the end of our meeting resulted in a CA19-9 level of 78. The stent was working, and this positive level suggested surgery before chemotherapy was the best option. We were released Friday, and spent the weekend as well as Thanksgiving at home where Sandra got stronger and her appetite increased. 

Walking in Valley Green

       

 Thanksgiving with the family

Surgery for a Whipple Procedure was scheduled for today, 12/3/2025. The Whipple Procedure involves removing the head of the pancreas, the gallbladder, the bile duct and the duodenum. They are all sent to pathology to determine the margins and staging of the cancer and to inform the chemotherapy regimen.  It is a major surgery and takes about 5 hours. hospitalization is a minimum of 5 days, and recovery is 4 - 8 weeks. Sandra's pre surgery bloodwork revealed her CA 19-9 had dropped to the low 60's. A good sign. 

The Whipple Procedure

(Everything in gray is removed)

    NOT this Whipple! If you know who this guy is, you're showing your age. 

"Please don't squeeze the Charmin!"

Dr. Ken Lee. Not a real Major, it's an old family name.

We love him. He's the best!

We just spoke with Dr. Lee. Sandra is in the recovery room, we hope to see her within the hour. He noted that everything went as planned, no complications. The tumor looked "like they always look". Some prominent lymph nodes, which could be due to the blocked bile duct. We really won't know much until the pathology comes back in 1-2 weeks. Then we will meet with the oncologist to develop a chemotherapy procedure plan. 

Thursday, December 4th, 2025

Sandra is doing really well. I am so proud of her and she is such a warrior. She was really loopy in the post-op recovery room last night, as expected. They have a little machine that automatically puts pain relief into the gut, then they give her additional as required. Jessica, Lauren and I were with her for the 1.5 hours they held her. Then I went with her to her regular room where we are now. The hardest part last night was the transfer from the transport bed to her regular hospital bed. Lot's of pain. Then, due to the transfer, her pain meds weren't immediately available because the orders hadn't come through to the pharmacy. They have to confirm that the patient is on the floor and in the room, then review the order, then remotely unlock the narcotics drawer. I understand the procedure to combat abuse, but it seems there should be a better way. Anyway, she got her pain meds after a half hour delay and lots of agitation. 

We slept reasonably well through the night considering the usual hospital interruptions like a finger stick every six hours to check glucose levels. Glucose is produced by the pancreas and they want to ensure it was doing its job. Sandra was on Morphine and Tylenol, Xanax made this thing bearable:

 I think it's a medieval torture device. I was telling the kids that every hospital administrator should have to spend at least one night sleeping on this before they buy them for patient rooms. 

They took her arterial line out before she left the post op room, and this morning they took out the NG tube and her Foley catheter. Now she can take things orally. "Sips and (ice) Chips" today, clear liquids tomorrow, color liquids like juice and broth the day after, then "gastrically tolerable" food. Taking out the Foley will give her mobility. They said PT and OT would be by today, they want to get her moving as quickly as possible. They said Dr. Lee is in surgery this morning, but we hope to see him today. 

Regarding visitors; I think we are limiting it to the kids, Jessica, Lauren and James. Fortunately they all work down here, so they have easy access. We want Sandra to focus on rest and rehabilitation. 

Friday, December 5th, 2025

Lots to report but nothing to report. Small steps. The surgical team was in yesterday afternoon but I wasn't here. Sandra said they didn't have a lot to say, so... Sandra walked in the hall, which is good. Again, I wasn't here, but even a little walking is good. 

I figured daytime is a good time for me to go home as there is a lot of activity in the hospital and the kids would be visiting when they can throughout or after their workday. So I got to go home and eat, nap, shower and change clothes. Sleeping last night was okay for me, they got me a better chair, one that lays flat. We kept the old one too, so it looks like we're having a furniture sale in the room! 

Sandra's sleep was intermittent. Lots of abdominal pain which she is taking a variety of painkillers for. She was up numerous times to pee as she is continuously hydrated through the IV, but today she was taken off the IV, as well as monitors. She walked to the bathroom, which is good. She is also sitting up in a chair and walking in the halls with me. All good activities. 

The GI resident came in today and removed the bandage from her incision, it looked good. He said it needed the air to heal. Our nurse said she would be given a PCA (Patient Controlled Anesthesia) device for pain control sometime today. She is drinking tea with sugar as well as apple juice. 

We are continually telling each other how much we love the other. Hard to believe we were just in Italy celebrating our 40th wedding anniversary. Eating, drinking and walking as much as 12 miles a day. As Sandra says, "things were going so well". Her retirement, financial security, our children and grandchildren so close, time to indulge ourselves. It's easy to go to a dark place and I resist it as hard as I can and try to project that to Sandra. I told her this morning that when we are in whereever we end up, celebrating our 50th anniversary, we'll smile and say "we did it again" 

Thanks so much to all of you for your love and support. It means the world to us and the whole family. 

Saturday, December 6th, 2025

Lauren spent the night last night. Her report this morning was that the doctors came by earlier and took her pain ball out. That's the anesthesia that goes directly into her gut. I was wrong in saying that she was getting a PCA. All of her meds are being taken orally, which is better for discharge. They also took her off of food restrictions. When I got here she had half a grilled cheese, some diced pears and vanilla ice cream. She's been drinking tea all day and is allowed to  have sugar and milk in it. The doctors said everything looks good, she got fairly good sleep last night and Sandra said she feels better today than she has for the last two days. Despite all these good reports, she still has pain, is weak and varies in strengthh and endurance. As the doctors pointed out, she is only on day three of a 4 - 8 week recovery. 

Josephine paid a visit today. The best medicine!

Sunday, December 7th, 2025

Sandra had a difficult night. Didn't sleep well and had depressing thoughts when awake. Her GI surgeons came in this morning and and looked at the incision. They said her drainage from the wound looks good and they may pull the drain on Monday, which could lead to discharge on Monday or Tuesday. We discused diet and what home life would look like. She will have home care 2-3x week, can use stairs but should limit bending at the waist and can't lift anything over 5 pounds. I asked the GI doctors why Dr. Lee said weeks 2-4 were the most difficult since she seemed to be doing so well. They said that once you get home you can't do anything and lack energy, which is depressing. I imagine a lot of people go home virtually alone, which is not Sandra's case. If anything, we'll have to limit her stimulation. She typically only has about 15-20 minutes of "on" time, then needs to close her eyes and rest. 

Monday, December 8th, 2025

Heading Home!

Sandra was discharged today around 2pm. We are home now, resting up for the big Eagles game tonight in L.A. Discharge reports call for lots of rest, pain and digestive meds and no B.L.T. (Bending, Lifting or Twisting). Lifting is limited to 5-10 lbs (For reference, a gallon of milk is 8 pounds!). She can shower, but no baths. She is on a G.I. sensitive, post-Whipple diet. Basically, lots of small, easily digestible meals with lots of protein and low in fiber. We will be scheduled for a follow up visit with the G.I. Surgeon in two weeks to remove the 25 staples in her belly and then it will be off to the Oncologist. 

 

Thanks again for all your love, concern and support. I will update the blog as necessary but feel free to reach out to Sandra directly via phone, text or email as she will be riding the couch for the forseeable future. 

Tuesday, December 16th, 2025

Sandra got her 25 staples removed today. Surgical staples don't crimp closed like a paper staple, they keep their U shape. Your skin grows around them though, and it can be a little sticky getting them out. It hurts. They don't knock you out, and there isn't any local anesthetic they can give you that wouldn't hurt as much, if not more, than just taking them out. I tired to hold Sandra's hand and coach her through it, but similar to when I tired coaching childbirth, I just got yelled at. :) Fortunately, Jessica arrived and did a great job of coaching her mom through it. Her incision looks good. A healthy, healing pink. 

Dr. Lee arrived and noted that Sandra looks great. They discussed her pain level, gut activity and her well being. Pain comes and goes but she in managing it well. Her digestive system is functioning better every day and he took her off of dietary restrictions, telling her to follow her cravings and the feedback she gets from her stomach. Sandra complains of fatigue and some down days but he said that is to be expected. He reminded us that weeks 2-4 will be difficult, but she'll feel more like herself and will continue to improve through weeks 5-8.

The pathology confimed pancreatic cancer and they are placing it at stage 2. They took out all of the tumor and report that there is no sign of disease at the margins. Of the 24 lymph nodes they removed, only 3 showed disease. That is a a good ratio, more lymph nodes could have bumped her up to stage 3. We were disappointed with stage 2, but Dr. Lee noted there are people with stage 1 who do worse and some with stage 3 who do better. He kept saying we are a N of 1 (unique, individual) and there is no prognosis. We are told by him and others that this is a very promising diagnosis. 

Next steps include an appointment with her oncologist mid-January and follow up with Dr. Lee late January. Thanks for your concern, well wishes and goodies! Always appreciated.