Ralf just mentioned that I have not updated my blog in a long time… and he is right. I guess I just didn’t have it in me. I have been trying to come up with a description that could capture how life feels like at this point: “bipolar” comes to mind. Ever since Spring of 2023, we have been constantly pivoting between hope and hospice - sometimes within the same day. It’s not just the physical pain but the emotional repercussions that left their mark on both of us.
I will try and just summarize the progression through 2023 (while excluding a lot of non-cancer related issues for now):
April/May - As it turned out, the medical oncologist Ralf was referred to at Moffitt was mediocre at best, prejudging him from his file, dooming him to die soon from catastrophic bowel obstructions. And we trusted that doctor, which is the only reason that Ralf agreed to that oral course of chemotherapy - to buy us some time. Well, let’s just say, he didn’t tolerate that poison at all and had to discontinue treatment within two weeks. Severe fatigue and beginning foot/hand syndrome were just the beginning, and quality of life has always been the number one priority, especially if you consider that chemo has very low efficacy in this case. So here came the “downward/hospice” trend.
June/July - to our surprise, the medical oncologist introduced a new treatment option, based on a specific genetic mutation found in Ralf’s tumors: Immunotherapy (who knew they kept his tumors on ice since 2019 - and why didn’t they test it sooner?…). In fact, initiating genetic testing is the only good thing this oncologist did, given that we had no further treatment options at this time.
This new treatment was suggested to be potentially effective but needed to be infused every three weeks, for up to two years. So here we were, full of hope again, driving 2 1/2 hours each way to Moffitt every three weeks for a 30 minute infusion. And they didn’t make it easy: scheduling was a nightmare, and it became very clear that we are just another faceless number in the system. I dreaded those trips, which lasted all day, and with Ralf’s dietary restrictions it was just brutal and exhausting. But we had hope again for more time.
Additional curveball: concurrently to all the cancer-related stressors, Ralf’s artificial right hip was getting progressively worse. After a consultation with a hip specialist, it was revealed that his hip implant was about to fail - in fact, it was on the verge of breaking out of his femur! He was put on non-weight-bearing precautions and scheduled for urgent revision surgery for mid-August.
July - it started suddenly during the evening of July 30th. Ralf’s started to have excruciating pain, his belly getting hard and distended. We didn’t know what was happening and were trying everything to manage this - to no avail. Curled up in pain, drenched in sweat, and white as a sheet, we went the closest ED in Deland. Diagnosis: multiple small bowel obstructions. They managed his pain with opioids and attempted to place a NasoGastric tube (NG) - four times, until blood ran out of his nostrils and he begged them to stop. What happened next was most scaring, cruel, and insane: the GI/surgeon on call declared “there is nothing we can do for you, you have to transfer to Moffitt. In fact, you should sign out AMA and drive to Tampa yourself to speed things up”. In hindsight, we should have filed a complaint, but in that moment in time, all I could think was “I have to get him to Moffitt so that somebody is helping him!”.
Since that horrible MD on call now passed the buck to Moffitt, Ralf was just being kept in that dirty, cold ED room - pretty much left to die an agonizing, painful death. I remember sitting alone at 3:00 AM by his side, holding his hand, while witnessing in horror as his belly got more and more distended. What ended up saving him was his body expelling copious amounts of black bile that spew out of him “Exorcist-style”. It decompressed his belly enough to relieve the tremendous pressure. In the meantime, I am becoming “that family member”, raising hell until a social worker showed up to help.
Long story short: turns out, Moffitt isn’t a hospital with acute/emergency capabilities and were dragging their feet with the transfer. In fact, Moffitt didn’t help at all. So I cancelled the transfer and Ralf was admitted inpatient to manage the obstructions. He started to improve and the obstructions started to resolve on their own. But the overall long-term projection was grim. All of our hope was replaced with despair and end-of-life reality.
During the follow-up with the Moffitt oncologist, the prognosis was that his disease had progressed to the very final stages, and we were told to expect more episodes like this.
After discharge, we had two hospice consults at the house, where Ralf wants to die (rather than in a hospital). We now have a number to call to initiate the setup and hospice care quickly when the time comes. I can’t really put into words what that felt like - Surreal? Morbid? Despair? I guess it was a combination of those. But at least, we have a plan now.
August - Not being able to walk or work out has been a detrimental factor in this entire nightmare and still needed to be addressed. If his implant were to break out of his femur, that would have been the end of him right then and there. This hip revision surgery was so urgent that despite the recent bowel obstruction episode just 10 days prior, the surgeon still went ahead with the surgery and fixed Ralf’s hip. It went extremely well, and even though Ralf was still weak and very underweight, he had a great outcome.
However, we weren’t discharged without another complication: we both got he flu during the hospital stay! How cruel is it to just having had a hip revision and been hit with the flu during the first part of recovery? Did I mentioned that Ralf rehabbed his hip on Tylenol only, avoiding opioids at all cost? It was a brutal time but kept my mind of the bowel obstructions for a bit.
Despite it all, Ralf was getting better, especially now that he was able to move normally again. It felt almost normal, and we were so hopeful that the immunotherapy will work to buy us more quality time and keep those obstructions at bay.
October - it was the day of our anniversary and Ralf’s birthday. We had a scenic boat tour booked at our local state park, which we wanted to do with Ralf’s cousin and his girlfriend, who were visiting from Germany. Everything was fine - until it was not. Again, in the evening of the 20th, Ralf had the same sudden-onset of pain, nausea, and distention. We ended up in the ED again, but this time at the Advent Health Daytona Beach hospital. After the horrible experience at Advent Health Deland, I had researched surrounding hospital options and picked the one in Daytona.
The overall presentation and progression was very similar to the first episode, and the CT scan confirmed the multiple bowel obstructions, just like before. I brought the hospice binder, just in case.
He was admitted to manage the pain and nausea. But this time, he didn’t get better, even though the evidence suggested that the bowel obstructions had resolved (just like the first time). Instead, his belly kept getting harder and bigger by the hour, causing excruciating pain, making it difficult to breathe. In fact, the pressure got so intense that his stomach herniated into his chest cavity. And all I could do was sit there, hold his hand. He said his good-byes to me, thanking me for the best years of his life. We talked about old stories, the Ponce, our adventures. And again, I am having a hard time putting words to my emotions. It just changes everything within you. But it is also not the time to fall apart. Be brave and savor the moments left.
Then came another unexpected turn of events: the real diagnosis! One of the tests suggested the presence of “enteritis”, which is a possible side effect of immunotherapy! The treatment is IV steroids, which he never received because the assumption was always that the ascites/cancer were the cause of the obstructions. There is so much more to the story and the battle I had to fight with the hospitalist, trying to convince him that this was an autoimmune attack, not infection or cancer-related, and that Ralf needed steroids. Long story short, a local oncologist was finally brought into the conversation, and he agreed. Steroids were given right away, and Ralf started to improve! He was able to go home two days thereafter - and not in a coffin!! Before he was discharged, the new oncologist also tested for drainable fluids in Ralf’s belly and despite the fact that Moffitt always told us that his ascites could never be drained, they found a large pocket that wasn’t mucous and drained 1.2 liters from his abdomen, providing further relief. We decided to keep the local oncologist, who is only 30 minutes away and lot more positive than Moffitt’s care has been.
December - Everything was going pretty well, considering the circumstances. Ralf has been scheduled for an infusion of a new drug that may help to keep the autoimmune attacks under control. However, insurance has been dragging their feet approving it.
I had to travel to Germany to look after my mom, which made me so anxious to leave Ralf behind. Things back home with my mom are also difficult and complex, demanding my attention and intervention - I just hope it will be enough for the time being. I can only be in one place at a time, dealing with one issue at a time.
Life has been so unpredictable - a bipolar rollercoaster, and I am now in a perpetual “fight or flight” mode, waiting for the next shoe to drop - something I may need to address professionally eventually. Everything was fine with Ralf when I returned on the 23rd, and we had a nice Christmas Eve at home… almost normal. But then it happened again, just like that: during the night from the 24th to the 25th, Ralf was getting the same hallmark symptoms, despite being on Prednisone. We ended up in the ED at Advent Health Daytona Beach around 7:00 AM on Christmas morning. Not really the gift we wanted to get. Given that it was a holiday and available resources scare, getting the treatment we needed was frustrating and difficult to get, but Ralf was finally admitted early afternoon and given his first dose of IV steroids. Thankfully, he responded well and was able to be discharged two days later. However, since we still weren’t punished enough, we both came down with COVID the day after: a scary diagnosis, especially now. And neither one of us ever had it before, so our anxiety level was high. Thankfully, we don’t have severe symptoms but will be in isolation over New Years.
This constant up and down, in and out of hospitals, being jerked between hope and hospice, life and death, fighting the healthcare system, struggles with my family abroad, keeping up with my job…. It all has left a significant physical and psychological toll on both of us.
Here is to a better 2024. At least we have more information now to go into battle more prepared.