1 Year 9 Months Update: Intense Times toward the End!

In this Update:

• Discharge from Moffitt
• Family and Graduation
• Moffitt Follow-Up
• Finally Ending 2019

Discharge from Moffitt

My last update ended with Ralf’s NG tube finally coming out and him starting to eat food. This is when the side effects of the chemo (even though it wasn’t a systemic infusion) became much more apparent: Ralf really started to suffer from nausea, food tasted nasty (metallic), and his heartburn was pretty intense at times. He also had trouble with delayed gastric emptying because the tumor piggybacked on the stomach’s blood supply, and some of that blood supply had to be removed along with the tumor. Immediately after the surgery, Dr. Dessureault had already told me that he will experience some symptoms because of this but that things will normalize with time. He was put on a medication (Reglan) to help with the emptying process, which has somewhat helped so far.

It took four more days before discharge became a possibility, especially since his oral intake was less than adequate. In fact, I was very worried how he would do at home, having only oral medication to help with the symptoms, especially at night. The nausea was so intense at times that I witnessed him vomit for the first time since I have known him! He would sleep a lot, preferably on his side, whenever the heartburn permitted him to be in that position…

On a positive note, I have slept/rested on this guest cot for over two weeks and my back has been fine! No pain or flare ups at all, which I am grateful for since one patient in the room is enough…

Being confined in this hospital room for so long really started to take a toll on us, especially mentally. So, after 16 days at Moffitt, we decided that we could risk going home at last. I packed up all of our stuff and loaded it on a wheelchair. Ralf is not allowed to lift anything heavier that a carton of milk since the HIPEC also slows down healing of healthy tissue and his belly incision is rather extensive. I picked up a busload of meds from the pharmacy to take home as well, including two boxes of Lovenox injections he needed to get in his non-existing belly fat for the next couple weeks every day. Finally downstairs, I got the car from valet and off we went to … Panera! Yes, after rolling off the parking lot, Ralf declared that he was in the mood for some tomato soup from Panera.

However, before our first “out of hospital snack”, we stopped by Lettuce Lake Park to take a victory picture:

So, guess what happened next? Ralf and I stopped by Panera on our way home (it takes us about 1 ½ hours from Tampa to Orlando), and he ate half a bowl of tomato soup plus a little baguette – and he felt ok! No nausea to speak off, no heartburn! He also said the food tasted almost normal! This pattern continued after being home: I cooked healthy, easy-to-digest foods I knew he likes, and he was eating well! Almost like a switch that was turned on! He only took Zofran for mild nausea twice, never touched the Phenergan, so all he really needed was Tylenol for discomfort, Cimetidine for heartburn, Reglan for the stomach, and Lovenox injections to prevent blood clots. I still need to get the empty sharps back to Publix for disposal since I don’t have a sharps container at home…

The next task at hand was going to the barber to have that humongous beard shaven off! It was way too far gone for Ralf to shave it off himself, so we went to a local barber to have it taken care off! He did feel so much less “fluffy” after J

With that being said, recovery has been a real challenge with lots of ups and downs. Until a couple of days ago, Ralf has been feeling pretty good overall. However, moving food through his digestive track is still a major issue. Severe fatigue is another one, which can hit him in mid-sentence without warning. We have been trying to do things and be somewhat active but with spells of sudden dizziness and fatigue, we need to stay close to home for the most part, just in case. Last Friday he tried out a fiber supplement to help with the digestive issues but that backfired badly! Instead of helping, the supplement caused extreme abdominal pain and tenderness. It has gotten better now, but the aftermath is still very evident, so Ralf kept rotating between laying down in bed and sitting in his recliner for days. I have been on medical leave since the surgery, which was great to take care of him at home. But in a couple days, I have to go back to work (at least part-time for now). Makes me pretty anxious…

Family and Graduation

We got discharged on Sunday, December 8^th, and my mom and stepdad arrived from Germany on December 11^th already! Would I have planned for this to happen? Absolutely not! But because my graduation was going to take place on December 13^th, the tickets were long booked before we even knew of the cancer. That left me with 3 days to get the place ready, put up a little Christmas decoration, and the prepare the guest room.

Then it was time to go to the airport to pick up my family. Since Ralf’s tolerance for activity still varied a lot, he stayed home. Their flight was on time and they made it through customs/security in about an hour (that’s a record).

As I mentioned before, my graduation was on Friday the 13^th (naturally), but since Ralf wasn’t able to attend, we took some graduation pictures together in our driveway. I was also honored that my German friend Renate agreed on short notice to come with us, since I needed someone to help navigate my mom and Karl-Heinz through the crowds.

I admit that I was sad that Ralf had to watch me walk on life-screen at home, but he texted me to say that he saw me walk in (with a serious face, obviously), and later the stage, which made me happy. This moment represented the conclusion of my graduate studies, and the fact that I was truly done with school was a huge relief.

Moffitt Follow-Up
The following Monday, my family and I took another trip to Moffitt for Ralf’s follow-up appointment. It was very emotional for both of us when we drove up to the valet parking lot. Lots of memories were made here, and I would rather not remember the struggles so soon.

Ralf had his blood drawn again, then we grabbed some lunch in the cafeteria (I am so familiar with), and finally headed for the appointment with Dr. Dessureault. We were quite nervous since this was the first follow up where we would discuss the next steps in treatment. But before that, Ralf had his 34 staples removed by the nurse (well, 33)!

Then the doctor came in: first, she removed the last staple that was stuck in the skin since the nurse didn’t want to torture Ralf anymore, then we talked. Overall, the surgery was a great success! Most tumor was removed, without sacrificing any organs. However, because this type of rare cancer is very unique and varies by patient, we will have to see where we stand by the end of March: Ralf got scripts for blood work (tumor markers) and CT of the chest and abdomen by the end of December, then again for the end of March. The doctor will compare both, the “new-you baseline” CT with the second follow-up studies to see how the cancer behaves. Hopefully the HIPEC chemo has taken care of the remaining cancer cells and and/or prevented additional growth. In such best-case scenario, no systemic chemo should be necessary, just observation. He does have some of the same tumors in his pleural cavity, but so far, it has not grown either. I have found a supplement (Afaya Plus) that is currently in clinical trials and has shown remarkable tumor-reducing properties, so Ralf is taking that as well. That, along with healthy eating, will hopefully be all that is needed to defeat this beast! We are very, very positive and hopeful that he will be alright!!!

Finally Ending 2019
Now it was time to get our Christmas tree! We all went to Lowes to pick the right tree together, then I returned with the Honda Element (has only two seats but most cargo space) to pick it up. This is the first year in many years that my mom and I decorated the tree together, since this was usually done before they arrived for the holidays in previous years.

We also went to the Wallaby Ranch in Davenport for their annual Christmas party. This was a milestone for us, since it was our goal to be able to go, even though it is half an hour away. It was so humbling to see Ralf’s old hang-gliding buddies hugging him, even crying at times, due to the joy of him being there. We had great lunch, but when the live band was playing in front of the mimosa stand, he had to excuse himself to snooze for an hour in his friend’s hooch. In fact, that was the main reason why we were able to go: he had a place to rest. I had one mimosa while watching the music with my family, but since I was the designated driver, that was it…    

I spotted a pooch that was so content and happy on mommy’s lap, I couldn’t resist taking a picture. Our Poncebear was with us last year as well, and he would have enjoyed this so much as well…

Fast forward to Christmas Eve: like every year, we spent Christmas eve at our house with family. In German tradition, that is when we celebrate Christmas and open presents. I also invited Renate and her husband Tom, since they are currently stranded in a hotel due to water damage (and contractor issues) to their home. Renate and Ralf are both from Stuttgart, but since my mom, Karl-Heinz, and I come from Hannover, we overruled! Poor Tom was a good sport and apparently very much enjoyed the food: Roulade, red cabbage, and potato dumplings!

We had a wonderful time, but we also miss our Poncebear so very much. When I opened the decorations for the tree, I found the bow he wore last year for Christmas… that made my heart ache, but now his bow is part of the tree every year.

On December 27^th, Bergie and her friend Maggy finally came to visit! They are both from Iceland, and Bergie and I have been close friends (and co-workers) for years. They brought so much food, it was delicious! The “Viking Blod” I found at Earthfare? Not so much (supposedly an ancient recipe of a Nordic dessert wine that will grow hair on your chest). Again, it has been so great that Ralf got to enjoy getting together with friends at home, without having to travel anywhere. His endurance and energy levels have been fluctuation so much, it is just not possible to go anywhere like this right now.

Finally, 2019 is coming to an end - and 2020 hopefully will make up for the pain and losses we endured. In the late afternoon, we had early dinner with Renate and Tom at Chromas in Lake Nona. Since their hotel is just next door, their commute was zero, lol. Our home is less than 3 miles away, which made it a safe(r) choice to take Ralf for dinner. We have eaten here the year before as well, so it’s becoming sort of a tradition. They have a very nice outside area where you can watch a giant projection just across, showing Christmas trees and decorations, alternating with snowy landscapes.

The remainder of New Year’s Eve, we spent at home. Ralf had to go to bed in between while my family and I watched a German New Year’s Eve event on television (streamed from my iPad) but just before midnight, Ralf was joining the party to welcome the new year! This selfie kind of mirrors our families’ affairs: at tad discombobulated but functional, lol! Happy New Year!!!

On January first, my mom and Karl-Heinz were flying home in the evening. We spent the morning at our pool, since the weather was so nice. In fact, I believe that the perfect weather and relaxed atmosphere were the perfect start of 2020. I sincerely hope it stays that way!!!

As I mentioned earlier, I have to go back to work in two days. But before that I will do something I haven’t done since October: work out! I feel well overall, but I need to get back to the gym in order to not lose muscle, especially in my abs and back!

I also applied to a new position as RN Simulation Coordinator, which would also mean bankers hours. Let’s see what January 2020 has planned for us….