1 Year 11 Months Update: Progress and Setbacks

In this Update:

• Enjoying the Outdoors
• Ralf’s New Setbacks

I wasn’t able to write this update in time due to Ralf’s recent setbacks in his recovery. In fact, I am writing this while he is admitted (the second time within two weeks!) for unexplained, severe abdominal pain. It’s been a scary and frustrating time, a setback we didn’t see coming, and we still have to figure out how to proceed. It saddens me to no end to see Ralf in such agony, especially since the month of February actually started out nice!

Enjoying the Outdoors
Ralf has been into bikepacking events for a while now, and due to the ongoing recovery from his massive surgery, he wasn’t able to attend the annual Huracan 300 this year. So, we decided to get up early on the day of the event to pick up dozens of donuts and bagels and drive 2 hours to Ocala to see the other riders and friends taking off. Next year, same time, I hope to be able to take pictures of Ralf departing on his own bike to tackle the almost 400 miles of mostly off-road trails and roads around Central Florida.

The weather in February has been very nice but often cold. One outing we did was going for a hike at the Seminole Ranch Wildlife Management Area. The sky was blue, the sun was bright, but the temperature was rather chilly. As we entered the gate to the hiking path, I said to Ralf “the sun is out, no cloud in the sky but it’s pretty cold. That is perfect weather for sunbathing gators”… Well, just a few feet further up the trail, we ended up passing this guy… I rest my case!

The hike was great, and we saw a lot of wildlife (mainly birds). Ralf has been very conservative with his activities due to his recovery. And being outdoors like this is important to keep moving and take in nature.

Another great hike was at the Little Econ trail system in Oviedo. I really like this area, even though the likelihood to encounter other people is much higher here since it’s a popular place for the locals. The trails are not difficult but you have to pay attention where you are going to prevent stumbling and faceplanting accidents.

After a roughly 2-hour hike, we found a nice restaurant in Oviedo where we ate a tasty sandwich, then strolled through the neighborhood before going home. And then it began…

Ralf’s New Setbacks
About an hour after we ate the sandwiches, Ralf started to get abdominal pain, which started between the sternum and the belly button before spreading further down. The pain worsened throughout the night, I could hear him moan, toss, and turn. I put a heating pad on his belly, gave him pain meds – nothing helped. There was this baseline pain with waves of “cramping/grabbing” pain every few minutes. Around 5 AM, we decided that this is not getting any better and that he needed to go to the ER to help with the pain and to make sure nothing sinister is going on inside of his abdomen. I took him to AdventHealth East since it’s the hospital closest to us: Big Mistake! Even though the ER visit was ok, the admission that followed was an absolute nightmare! In the good news department, the CT scan done in the ER didn’t show a bowel obstruction. In fact, the scan looked pretty much like the baseline scan from December. Ralf was subsequently admitted for observation and pain management. He was in so much pain, it broke my heart.

So, when he finally got to his room, he ended up with a roommate (separated by a curtain like the 1980s), who was hard of hearing and had the TV blasting. Not a very healing environment if you are in severe pain. The staff ended up moving Ralf to a different room with a roommate that was not hard of hearing but that didn’t make any difference. In fact, it was the worst setup I could have imagined! It’s not about sharing a room, but if the other guy behind the curtain is obnoxiously farting, burping, and also blasting his TV (no headphones!!!) 24/7, the aggravation was inevitable! This guy didn’t even wash his hands after going to the (tiny, shared) bathroom.

I had to raise hell to get Ralf to a more private room because he was getting worse, not better. But that didn’t happen until the next afternoon. After bringing up my concerns to the staff, I was told (very compassionately) that we can always sign out AMA (against medical advice). Very nice, so not only are you putting a patient in severe pain and anxiety in this chaotic, dirty, and loud environment, your solution is to leave? In any case, things got better after Ralf was able to rest without constant disruptions and lack of privacy.

But I must say, the overall care at this hospital was absolutely horrible. No communication among providers, no critical thinking skills, no clue as to what the cause of this severe pain could be, or what it had to do with his specific kind of cancer…. A plan of care would be agreed upon but never executed, and nobody knew who was supposed to order what, and the list goes on and on. On top of that, they screwed up the billing so that the initial insurance claim was denied!

After the severe episode subsided, Ralf was finally discharged: with narcotics and no diagnosis! At AdventHealth East, they had no idea of the cause, which is beyond scary. In the meantime, I did some research and believe that severe abdominal adhesions/scar tissue may be the culprit. The problem is that adhesions don’t show up on imaging, so the only way to confirm them is to do a laparoscopic exploration. With that being said, we would only have that done at Moffitt with his original surgeon. However, throughout this entire ordeal, she has been less than reassuring and didn’t think we needed to come to Moffitt, which is not just disappointing but downright scary. Now Ralf lives in constant fear of a recurring episode without any idea of what to do or not to do. To be continued, I suppose.

The month ended on a nice note though, when I went with Bergie to a Spiritual Fair. That is something she would have taken her beautiful daughter to, who also enjoyed these events very much. Bergie and I spent the day together, attended a workshop, ate a late lunch, and later I got some puppy/kitty love at her house. Makes me always realize how much I miss our Poncebear…