1 Year 8 Months Update: MSN & MOFFITT – The Ultimate Battle of 2019

In This Update:

• Internship/MSN
• CRS/HIPEC Surgery at Moffitt

Internship/MSN The weeks leading up to surgery have been incredibly stressful, trying to get all my internship hours done, working full-time, while getting our home ready. The majority of my remaining hours was precepting first-semester nursing students at the long-term care facility at the VA. Besides the SimLEARN Center, this was my favorite activity, and on our last day, I got a thank-you card and chocolate from my students. I also got a gift for my recent wedding. I was very touched. I finished my last day of internship on November 15th, exactly one week before the day of surgery.

In an effort to have room for all the books and other things, we bought a bunch of cabinets at Ikea the first week of November, which turned out to be an epic fail. The first smaller unit had holes that didn’t align, so we didn’t even bother to assemble the rest. Since we had them delivered, the freaking book cabinets needed to be picked up again. Still waiting for a refund but I deal with it when we get back home. At this point, I really didn’t care about shelving anymore.

We also managed to get a cleaning service to help once or twice a month with cleaning. The guest room is ready for my parents to arrive on December 11^th, I just need to inflate our king-sized guest bed. I also emptied the fridge, watered the plants, and paid the bills in preparation for our trip to Tampa for surgery.

With that extra stress of school gone, my panic attacks became more frequent as doomsday came closer and closer. On Monday the 18^th, we returned to Moffitt for the pre-op appointment, which went pretty well.

We got the all-clear from Dr. Dessureault and the anesthesiologist and got instruction about the bowel prep and shower regimen to take home. Tuesday was mainly dedicated to tying up loose ends, washing sheets and towels, and packing for the trip. We drove to Tampa again on Wednesday to check into our hotel close to Moffitt. On our way, we stopped by the Wallaby Ranch for breakfast with Malcolm and Laurie, which was so nice. We had our “last supper” at Carrabbas that night in Tampa, followed by a grocery run at Publix (water, coffee, jell-o, and juice).

The next day, Ralf was already on a clear diet. We took a nice hike at Lettuce Lake Park across the street from our hotel before starting the bowel prep at noon.

That afternoon, Rachel and Mara also arrived in Tampa, where I had a room for them reserved as well until Sunday. At least Ralf was done with the prep early enough to say “Hello”.

CRS/HIPEC Surgery at Moffitt

This part of the update is rather lengthy but also the most intense, emotional, and challenging experience (both mentally and physically). The cancer diagnosis itself, along with the journey it took to get to this day can’t be truly expressed in words. I am writing this update sitting on the edge of Ralf’s hospital bed while he spends some time in that awfully uncomfortable recliner chair. Hopefully, his digestion is stable enough that he can be taken off TPN (nutrition through the IV/PICC line) to go home in a couple days. It’s been 11 days since his massive surgery, and I stayed with him in his room from day one. Staff rolled in a guest cot to sleep on, and I spent countless hours sitting next to him; sleeping at night was only in increments especially during the first week when Ralf was suffering from the horrible side effects of the nasogastric (NG) tube that prevented him from swallowing, causing constant pain, retching, and choking.

From a personal reflection point-of-view, I wouldn’t have been able to do any of this just two years ago: sitting, laying down on that cot, helping with showers, dressing, sitting hours at end connecting/disconnecting equipment… nothing at all! Ralf was there for me when I went through my chronic pain and disablement due to degenerative disc disease and subsequent ADR surgery, and now I am able to take care of him during this dark chapter. For that, I’ll be forever grateful.

Surgery Day:
After two shower-rinses with special prep wash, we left the hotel around 0530 and arrived in the pre-op area around 0550. Check-in was relatively smooth, and Ralf and I were taken back to his pre-op spot just after 0600, leaving Rachel and Mara behind in the surgical waiting room. Ralf changed into a paper gown, got hooked up to the monitor, IV access to left hand (took two sticks and two nurses), then we waited for anesthesia to come by to insert the epidural for pain control. We spoke to the doctor one more time, Ralf signed last consent forms, and after the epidural was in, I said my good-byes to my already mildly sedated husband. It was a very unsettling feeling to leave him there, as I was clutching a plastic patient-belongings bag with his clothing on my way out.

I found Rachel and Mara in the waiting room, and we settled down for the wait. I was supposed to get text message updates from the OR nurse throughout the day, so I was having my phone on ringer and close-by. At 8:48 AM, I got the first message that Ralf was asleep, and the surgery had started. I was trying really hard not to think too much about what was happening in there, how he laid there completely vulnerable, someone calling “time out”, before the first cut was done. I was wearing his wedding band on my Ponce-necklace, hoping that my little family will remain together for many years to come. There were just so many variables, it’s scary and kind of unreal!

Rachel, Mara, and I settled in an area in the waiting room, where a lady and later an elderly couple joined us. Cancer brings people together I suppose, kind of joining a club. The lady’s name was Jennifer, and her husband was undergoing a lengthy prostate procedure. We shared our stories and talked about our husbands.

At 10:34 AM, I got another message “Patient is doing fine, proceeding well”, which in my mind meant they were making good progress. The elderly couple joined us around 12:30 PM. The husband had a last appointment at 5:00 PM somewhere, and they were looking for a more comfortable area to wait. I really didn’t want to leave the waiting area; I was just too nervous and wanted to stay close-by. At 1:03 PM, the message read “Patient is doing well, surgeon still working”… hmm, what is that supposed to mean? I wouldn’t think the surgeon would go to lunch… Then my thoughts went to “oh no, I hope they didn’t hit a roadblock, trying to debulk!” So, even though this made me a little uneasy, I tried to stay positive.

Around 2:10 PM, I agreed to go to the hospital’s cafeteria to get some quick lunch. However, just as predicted, at 2:17 PM, I get another text: “Please return to the surgical waiting area”! I turned around and speed-walked back to check the waiting area check in desk. There I was told that the surgery had been concluded and that they were now starting the HIPEC chemo! I was like “No, No, No!!! It’s too early!!! It’s only been 5 hours, that is not enough time!” I was devastated! I returned to my seat in disbelief. They hit a roadblock, they had to abort the surgery because it wasn’t much more they could do. At least that was my perception. Dr. Dessureault mentioned that this could happen, that’s why they don’t give a prognosis prior the actual surgery.

As I sat there, tears of panic appeared against my best efforts. Jennifer (her husband was still in surgery himself) got up to give me a hug and a tissue. Everyone was so nice as I sat there, clutching Ralf’s t-shirt that I took out of the belongings bag. Rachel and Mara were as concerned as I was. Longest two hours of my life! At 3:52 PM, I finally got the message that the it was done and that the surgeon was going to be out soon to talk to me.

I believe it was about 4:15 PM when Dr. Dessureault appeared and took me to a private room. Bracing myself, she said “all went pretty well, we got the bulk of the disease out with the greater omentum right at the beginning!” I had a wave of relief wash over me, and I eagerly listened to the rest of the outcome. Apparently, the majority of the tumors grew on the fatty sheet that covers the abdomen (greater omentum), and when they removed it, it came out in one large “pancake” mass with a weight of 9 pounds! Where on earth was this man hiding 9 pounds of tumor in his belly? They then proceeded to “clean up” organs that had disease, including the spleen she “picked pretty clean”. The fast majority of the remaining tumors were sprinkled like parmesan cheese throughout the peritoneal cavity and were small enough to be classified as category 1. Any tumors between 0 and 1 have the best chance of completely be eradicated by the HIPEC chemo, category 2 was not as good, and category 3 are related to poor outcomes. However, there was one area between the liver and the stomach they couldn’t quite get to enough, so this remained a category 2. But you know what? I take it! Considering the large extent of his disease, this was even better than anticipated! If all removed tissue comes back from pathology as low-grade, they will most likely only monitor Ralf to see where things go. If some come back as high-grade, there will be systemic chemo involved. However, a couple days ago, we got the confirmation that all disease is low-grade! Best possible outcome 🙂

He also has the small amount to tumor burden in the pleural space, but all this is to worry about another day. I was just thinking how Dr. Nair gave Ralf a tumor score of 39 (the highest possible), when in fact he was a 28 going into surgery. Not the best, but much better than Nair predicted. At UF Health Orlando, they wanted to take out part of his diaphragm, his stomach, most intestines, bladder… gutting him like a fish! This proves that second opinions with the best experts is absolutely crucial, especially with such a rare cancer!

I hurried back to the waiting area to let Rachel and Mara know the good news since they still thought Ralf had a bad outcome. Relief all around!!! It took another 45 minutes after I spoke to Dr. Dessureault before I was brought back to PACU to see Ralf. My poor baby had the (NG) tube coming out of his right nostril, which I didn’t anticipate beforehand. When I was leaning down to tell him that I was here, he kept softly saying “pain, pain, pain, pain”, breaking my heart in a million pieces! The anesthesiologist ended up injecting a hefty dose of lidocaine into the epidural to ensure that the space was all filled up with medication. That appeared to help, and I was able to share the good news with him. When Ralf inquired about his spleen, I was happy to tell him that it was still there. But he was so drugged up that most didn’t register until later. When it was time to call report for him to go to a room, I headed back to the waiting area sent Rachel and Mara back to the hotel with my car since I was definitely staying with Ralf.

Finally, around 6:30 PM, I got to his inpatient room on an oncology med-surg floor where Ralf was transferred to from PACU. He actually looked pretty good, with good skin color, considering what he just went through. Because he still was pretty sedated, he didn’t feel the NG tube as much, and the pain was much better controlled. Staff rolled in a guest bed/cot which most likely would just fold up and collapse if I weight significantly more than my 120 pounds. I was so exhausted but because Ralf was fresh out of surgery, he was closely monitored throughout the night, which meant that staff just constantly came in and out for tests and measurements.

The first day after surgery, Ralf was weak and dizzy, but the pain was controlled by the epidural (continuous Dilaudid) pretty good. There was so much stuff attached to him, capnography via nasal cannular coupled with the epidural, PCA, Foley catheter, continuous infusion of fluids, and the most hated NG tube. Getting up was a nightmare due to nasty waves of nausea and faintness. Besides, the recliner in his room was way to small and uncomfortable for him, and the bed too short. By day three, he was up and walking for the first time, which was a much better experience at this time.

Now that the anesthesia had worn off, Ralf started to really suffer the side effects of the NG tube. He had to sit up high – day and night- to prevent the tube of gagging him. After dozing off for a few minutes, he would jerk awake, choking, feeling like “drowning”. It was awful to witness, and it appears as if the low-intermittent suction wasn’t quite able to keep up with the secretions, making his stomach feel full and backed-up. He had to constantly retch-up mucus – day and night until his throat was sore as sandpaper. Therefore, a little basin and washcloth was always within reach. Not fun for someone who is used to be strong and independent!

At least his wounds were healing nicely, even though he was a tad shocked when he saw his incision for the first time, spanning from the sternum to the groin…

He also had several open blisters on his back where the Tegaderm dressing was securing the epidural but those have been healing well as well. Due to my background, I was able (and allowed) to provide a lot of patient care, including showering, handling the suction, going for rehab walks, woundcare, etc. myself, and after the first few days, I found the clean-supply room to get most items I needed to change linens and get clean towels. At one point, nurses started to tell me that I now could apply for a job on at Moffitt…

Recovery has been slow and agonizing, mostly because – you guessed it – the awful effects of the NG tube! Otherwise, his labs and kidney function have been very good from day one. The epidural was discontinued by day 6, and the Foley came out day 7. But the (slight) return of bowel sounds/function didn’t happen until day 10, so for the past week, Ralf had been infused with nutrition (TPN) through a newly placed PICC line. After all, he hadn’t had anything to eat or drink since the day before surgery…

Ralf’s Thanksgiving dinner vs. My Thanksgiving dinner...

The HIPEC chemo has had more detrimental effects on his GI function than I anticipated. And it wasn’t until the evening of day 11 that this hated tube finally came out! I was stalking the nurse to call the attending physician to put in the order and pull that sucker as soon as bowel function was confirmed. After that came to pass, Ralf took a nice shower and came out a new man!

He is still attached to the pole due to the TPN, but that is the last string attached. Ralf started eating a soft diet yesterday, suffered significant heartburn thereafter, but hopefully it will be better controlled tonight with Protonix and Famotidine. Our goal is to be discharged the latest by Saturday, which is three days from now... Fingers crossed!

But with all the hell that we (and especially Ralf) have been through, I am grateful at the prospect of many more years together filled with travel and adventures!