Ever since I started writing this blog, I never missed an update. Until now. In fact, I missed two updates. Thinking of the words of the son of my dear friend Libby, who just passed away from chemo complications a couple weeks ago: “Life is difficult, life is hard”. The last few months have been brutal, putting me in a constant state of anxiety and depression. But I am trying hard to overcome this, the effect of this unprecedented pandemic has had on my mental health, Ralf’s setbacks, finding my way in a new job, then having to travel to Germany for a family emergency… it is just getting a bit much.
Good-Bye Emergency Department – Hello Education! But let me start by recapping the month of June – my last weeks as ED nurse during this COVID-19 pandemic. Ironically, I got the new job as Simulation Coordinator already back at the beginning of March. However, due to the dire circumstances, I was on hold until June 22nd. I admit that after the first COVID wave somewhat subsided, things were less scary and dangerous during the first part of the month. It was about two weeks after Florida loosened the restrictions and opened the bars again, when almost overnight we experienced a consistent influx of sick Corona patients. I remember the day I was in triage, shortly before my transfer, where I was more exposed to COVID in this one 12-hours shift than during the past three weeks!!! It was scary! And those Covid patients weren’t old or compromised, they were in their mid-twenties! I remember that bartender who couldn’t finish a single sentence because he was so short of breath, with a fever of 103. I was locked in with that 27-year old guy for over an hour, doing blood cultures, EKG, and trying to keep him stable until I transferred him to the ICU. Same day, I cared for a 25-year old girl, who went to the bar with friends for a drink… and on and on it went. It was amazing to see the obvious pattern. So many people just got careless, acting as if the pandemic was over and there was no need for masks or social distancing. And I get it: I have been more than depressed with what life has become. I am mourning the freedom to go to the movies, or a restaurant, hug my friends, or go grocery shopping without fear of a deadly disease that has taken over the world. But I have seen the truth, the sick, the repercussion of letting your guard down. And it’s not just about me: what if I take that virus home to Ralf?
However, just as the second COVID-19 wave was taking off, I finally got to my new destination: The Education department as the new Simulation Coordinator – a job I was very much looking forward to! During most of my graduate education, I was fascinated by and focused on healthcare simulation. Now all the hard work finally paid off, and on June 19th, I worked my last day in the Emergency Department. This was a bitter-sweet moment: I always wanted to be an Emergency Nurse, and I consider myself very lucky that I got to open up a brand-new Emergency Department at the VA Hospital in Lake Nona in 2015. But now it was time to say good-bye…
Last Day in the ED!
Natalie
Cindy
Jonathan & Gary
Joel
Jodie
Angie
Bergie
Diane
Dr. Velez
Bonnie
Ralf was so excited for my new job, he got me flowers on my last day!
Fast forward to June 22nd, 2020: the day I was finally starting my new position as Simulation Coordinator at the VA Hospital in Lake Nona! Here’s to a new chapter in my nursing path! But I must say, the last day in the ED was quite emotional, and I will miss my patients and my peeps for sure…
First Day in Education
Traded my locker...
...for an office
I admit, I was pretty nervous on my first day, not knowing what to expect. The good think is that I have been around the Orlando VA for so long that I know my way around – as well as a lot of people. What was “unique” about this position was the fact that the previous Simulation Coordinator had been gone for almost a year, and even before that, the lab wasn’t quiet utilized as intended. And the madness of the pandemic, when stuff was just taken from the Simulation Lab, never to be seen again, made my job an even bigger challenge.
Having a Predictable Schedule With my new job came also a predictable schedule: Monday through Friday, 0800-1630, weekends and holidays off! I also got a government laptop to work from home if need be, which added a new layer of flexibility (extremely important feature as I found out in July…). So, Ralf and I went on some outings on my days off – and it was so much less stressful all around. No more fear of exposure, no more 12-hours shifts, coming home late… I didn’t realize how much of a difference this would make.
We explored the north entrance of the Lake Lizzie Preserve on a rainy day, then the south entrance the following weekend. We also went for a bike ride at Triple N Ranch, were I haven’t been in so long. It reminded me what outdoor adventures in Florida during summer time always have in common: LOTS of water, and lots of turtle activity!
Life in Isolation Even though Florida started their phase 1 of re-opening the state, Ralf and I decided to stay put. In fact, the virus is still out there and with people returning to their “normal” life activities, the spread of COVID-19 will continue to increase (in my humble opinion). Especially Ralf can’t risk getting sick, and it is already pretty nerve-wracking that I am his number one risk factor. When I go to the store (every 10 days or so), I make sure to wear my mask and stick to a “disinfection routine” to minimize the risk.
I can attest that the mandated isolation and restrictions were actually working in reducing the cases of COVID-19 significantly. In our ED, we still isolated and treated patients with certain symptoms “as-if”, but the actual cases of infected patients has gotten less and less. Still, I have maintained my decontamination routine at home by taking off all my clothes in the garage, showering in the guest bathroom, and washing all contaminated items separately. I do feel a little less anxious right now, though, given the reduced numbers of COVID patients (for now…). I am afraid of another wave coming our way as the restrictions are loosened ... Time will tell!
With that being said, being isolated from the world takes a toll on mental health and restricts what we can do in many ways. I admit that I actually mourn the loss of a world that will never be the same after this. It is hard to adjust to this new reality, and it saddens me that even simple tasks like going to the grocery store provoke anxiety and cause stress for me. I am also so sad that we wont’ be able to celebrate our wedding at the Wallaby Ranch in October as we had initially planned, nor do I know if I get to spend Christmas with my family this year. So Ralf and I have been trying to get some dear “outdoor-time”, which isn’t easy when State Parks and State Forests are actually closed…
Cabin Fever!
Running Again! I am happy to report that I finally started running again! I ran/walked two miles, which may have been a little ambitious since my poor thigh muscles were on fire the next day. However, my back was not complaining at all, which is a victory…
Running again for the first time!
We also continued our garage workouts, but I admit that my motivation level hasn’t been very high lately…
I hope that by the end of June, things will get a bit more structured when my work schedule finally changes to bankers hours: yes, I finally got a start date for my new position! June 22nd is my first day as Simulation Coordinator!
Happy Birthday - Pandemic Style May 26th happened to be my birthday, and since going out wasn’t an option, Ralf decided to pick up a three-course dinner from Nona Blue! Yes, restrictions have been partially lifted, and many restaurants offered limited dine-in options, but as I said earlier, we are not taking any chances… In any case, we dressed up, put some music on, and had a wonderful dinner at “la casa”!
Next month will bring Ralf’s official post-op follow up with Moffitt, and I will start my new job on June 22nd… Let’s see how it goes!
2-Year(ish) Follow-up X-Rays Due to the shutdown of all non-essential services during the pandemic, I wasn’t able to get my 2-year x-rays done until now. I wasn’t all too worried that something was wrong, but it always gives me peace of mind to get confirmation. I haven’t sent my images to Dr. Desai yet but from what I can see, my ESP is exactly where it was before. Also, the disc space of my L4/L5 is well preserved, which means no signs of accelerated degenerative disc disease! The report stated the same, and since I have gotten all my x-rays there in the past, the radiologist reading my film had the comparison images available as well.
I wanted to add that even though my “old” back pain never returned after surgery, I have been feeling very sore and tight all over - from my neck to my ankles, I am a knotted mess. Stretching has helped some, and I know I should be doing more rehab workouts, but I am so stressed and often so tired that I just don’t do it… working on it though.
So, here they are:
L5/S1 Close-Up
Flexion
Extension
Oblique Right
Oblique Left
Being "Essential" Working in an Emergency Department during a global pandemic has been so many things. Scary and unreal come do mind, actually. I am however grateful that A) I have a job, and B) I am physically able to do my job. But being repeatedly exposed to COVID can be mentally exhausting. It almost is a feeling of “doom” whenever I pick up a suspected COVID patient from the outside holding area to take him/her to an isolation room for bedside triage. Closing the door behind us, my co-workers would stay outside the glass door, ready to fetch something I may need. Being in that closed room for a considerable amount of time doing necessary patient care trigger thoughts of “what if”, but you still give your patient all you’ve got – they often are as scared as you are.
When the number of cases was starting to increase, the issue of having appropriate PPE came to light. When I got my first paper bag with my name on it in which I was supposed to keep my disposable N95 to be reused, I couldn’t believe it. The procedures for PPE use have changed multiple times as the crisis unfolded, and the VA showed great efforts to keep us safe. I was eventually fitted for a half-mask that is meant to be cleaned with soap and water. I learned the hard ways that wearing N95s really hurt your face after a while, but the red marks hopefully mean I got a good seal… Ralf also bought me some face shields for protection. I have been wearing my surgical mask for multiple days (gross!) but finally got washable face masks from Ebay, which I now use instead.
First issued N95 (under the surgical mask)Upgrade to N95 half-face maskLeaving a mark = hopefully good seal (ouch)
Thank-You Parade around the Orlando VA Medical Center by local law enforcement!
Trying for some Normalcy A global pandemic like this is scary enough, but with Ralf’s recent hospitalizations and post-surgical issues, it adds an additional layer of anxiety (for both of us). We lost our primary care provider, who left the practice mid-March. Ralf also wasn’t able to establish care with the GI specialist. This was actually very disappointing because Dr. Lepane was assigned to his case during the latest hospital admission at AdventHealth Celebration, and we really wanted to get established with her for Ralf’s GI-related needs that have nothing to do with his cancer. However, she refused to take him as a patient, referring him back to Moffitt. She didn’t even talk to us directly but brushed us off through a middleman. Very disappointing indeed.
Regardless of all the anxiety, uncertainty, and fear, Ralf and I really tried to keep some sort of normalcy in our lives. Even though we got married in October, our unofficial anniversary has always been April 1st. That was the day I moved in temporarily to take care of Poncebear while Ralf was away for the weekend – and then I never moved out, lol. So when April 1st came around, Ralf clipped some branches from the plant that grows over our wall, right in front of our door. That was so sweet!
We also did a few light workouts out of our garage, where we have some equipment stored. Unfortunately, I just can’t get it together enough to be consistent right now…
Whenever I was off from work, we also went for long walks around the neighborhood. We are very fortunate to live in a safe, gated community with lots of lakes and walkways. Before the official lockdown, we also did a couple outings to Split Oak or Hal Scott Preserve but ever since the official lockdown, we haven’t left the neighborhood. Funny enough, we still got our gator encounters and examples of the “circle of life” away from the woods!
Gator in Split Oaks
Gator in Village Walk
Freshly caught from a Village Walk lake
Easter 2020 was pretty much non-existent, even though I was actually off this year. Found this old picture and thought it pretty much sums it up:
We did have plenty of time though to really improve meal prepping and healthy eating. Due to the virus, all groceries are getting disinfected in the garage before entering the house, which is quite an operation! We also realized that we need a bigger freezer because we are running out of space. In addition, we ordered a gas grill online and managed to assemble it on our patio.
Overall, life feels very strange these days and I am sure the world will adjust but never go back to how things used to be, at least not completely. But at least I am going through this without a broken back, and my heart goes out to all those who suffer from crippling pain in the midst of a global shutdown.
Foreword Let me just start by saying that I if I had my surgery scheduled for today instead of two years ago, it would have been a complete nightmare. Back then I was in so much pain that wasn’t able to work anymore. I was depressed, and I had no quality of life left. Making the decision to go overseas to have spinal surgery is scary enough, but having a global pandemic happen is an unforeseeable disaster I am glad I didn’t have to deal with. My heart goes out to all the people in severe pain, who have to live through this pandemic not knowing how this will affect their ability to fix their back, or when.
I am not going to lie, being an Emergency Department nurse during a global pandemic is petrifying! I am not so much worried about me getting sick but that I take this virus home somehow to infect Ralf. I wear all protective PPE at work that I can, but being locked into an isolation room with a very positive, very sick Covid-19 patient for 15 minutes while doing the triage and providing direct care causes a sickening knot in the pit of my stomach – which you push out of your mind until you did what you could for your patient. My peers and I are on edge, but we have each other’s backs and will care for our community with all we’ve got.
Mobile Medical Tent
Full PPE
TRIAGE!
Best crew to work with, plus the medical director who stopped by
The Good
This 2-year update is not quite how I envisioned it, especially since I won’t have my follow-up X-rays until June (maybe), but gauging from how I feel, I would say that nothing has changed. After I have the images, I will send them to Dr. Desai in Cologne for review and confirmation, but that will not happen anytime soon.
Looking back at the past year, there is a lot I was able to do. As many of you know, Ralf and I have always been very outdoorsy people, so we continued to go on many biking adventures in various Florida forests and Wildlife Management Areas, and I never had any issues with my back, even if I had to carry my bike through bodies of unexpected waters. We also went tent camping in the Everglades, and I was riding 30 miles of muddy trails during a monsoon.
I also continued to advance through my workouts with Angela at her Crossfit Lake Nona gym. However, due to unforeseen circumstances, full-time work, and graduate school, I was not really able to truly establish a routine. Honestly, I envisioned myself being super-fit and able to do several pull ups which was one of my goals. Did that happen? Not really… Life appears to have a way to throw curveballs that can mess up all the good intentions and plans that were made. I don’t know about you, but 2019 really was an intense and pretty awful year.
We visited Key Largo in August of 2019 where we tried out sea-kayaking for the first time. This was truly a test to see how my back would behave since it required me to sit in a cramped space for over two hours while paddling and navigating the kayak through open water. I did feel a little stiff at the end but once I got out of the kayak and stood up, I felt great. Absolutely no pain or soreness. Definitely something we can repeat!
Another water activity Ralf and I started exploring involves a packraft. Ralf has gotten pretty serious with bikepacking, and a packraft is designed to be carried on the bike, which then gets strapped to the raft to continue via water ways. We received the pack raft also in August but due to what came next, we only took it out to the lake a couple of times so far. It’s a lot different to maneuver the raft compared to the sea kayak, but it appears to be a very fun activity for the future.
An impromptu wedding was also on the agenda, which ended up with just him and me in the courthouse. Ironically, the reason why we didn’t get married sooner was the difficulty of getting friends and family from around the world together at the same time. Ralf sometimes said, “let’s just elope…”, which is ultimately what happened!
Another major life-event was my graduation (finally) from my MSN Nurse Educator program in December. To be honest, with everything going on, I really didn’t want to go. However, here I was, getting my regalia on, taking pictures with Ralf in the driveway of our home because he was not able to come. At the arena, I ended up standing backstage with my group for 1 ½ hours before marching inside, just to sit for another 3 hours on a hard plastic chair. At least Ralf got to see me walk on livestream…
At work, I participated in various Emergency Management activities, such as retrieving a mock-victim from her car in the community and help with shooting a decon training video that required me to not just dress up in full gear but also tonrepeatedly kneel, lift and twist while transferring a mock-victim from the ground to a stretcher.
The Bad Looking back at the past year, I must say it was awful in terms of certain life-events and stress but at least I was able to be there and do what needed to be done when it was most important.
Being able to go back to work as an ED nurse was one of my major goals, and it came to pass without issues. However, there has been a lot of negative energy developing in my department due to changes in leadership at the time. That in turn made going to work a very stressful time, but at least I got to care for my veterans again without physical restrictions.
Moving on to August: as it turned out, the Key Largo trip was the last time Ralf and I had normal lives. A few days after we got home, Ralf had a CT scan done that revealed stage 4 peritoneal carcinomatosis – a very rare cancer that grows in the abdomen and around all associated organs. This has truly been a life-altering shock, and it took me two weeks to pull myself together to come up with a plan. If you read my blog, you know the emotional roller-coaster we have been on. To make a long story short, against all odds, we found the only treatment option for his condition which was cytoreductive surgery with HIPEC (heated intraperitoneal chemotherapy). We decided to go with the Moffitt Cancer Center in Tampa, which is one of the top 10 cancer centers in the world. Lucky for us, Tampa is only 1 ½ hours away which made traveling there a lot easier.
It was so hard to focus on school in the light of Ralf’s diagnosis. All this happened just before my last semester of my MSN program, which entailed a 180-hour internship I had to finish while working full time. To be honest, I almost dropped the semester, but Ralf really wanted to see me graduate in December, so I pulled myself together and pushed on. I think the hardest part was to be away from home pretty much all the time, either completing internship hours or going to work. Ralf’s surgery at Moffitt was set for November 22, so I had to get everything done before that date – including getting married and finish school!
I don’t know how, but I actually managed to get everything done a week before surgery. I can’t even imagine what would have happened if my back was still broken – constantly on the move, pushing on. In addition, while Ralf was admitted at Moffitt, I got to sleep on a pretty flimsy cot for 16 days, which my back tolerated just fine despite the bend in the middle of the mattress.
Fast forward to February: Ralf was recovering so well, and we started to go on hikes and some mellow bike rides. Everything was going so well until mid-February, where he had a sudden episode of severe abdominal pain that didn’t subside, so I had to take him to a local ER. Having a rare cancer is scary enough but getting admitted to a hospital where the doctors and nurses have no clue is downright petrifying. After the acute pain had somewhat subsided, Ralf was discharged without a diagnosis.
Two weeks later, the same thing happened to him but this time the pain was so much worse! I took him to a different ED in a much better hospital where he was admitted again. Besides pain control, they wouldn’t touch him either but at least they had him transferred to Moffitt where he needed to be. The final verdict now is severe adhesions and scar tissue that is strangling his gut, which is an unpredictable complication we didn’t see coming, but we have a plan once the pandemic subsides.
During the last admission, I got to sleep on two different guest cots, and I must say Moffitt wins the price despite their flimsy contraption! That thing I slept on at AdventHealth Celebration was so hard, I woke up stiff and in pain – from neck to low back, stiff like a board. No, the pain was nothing like my pre-op back pain; it was just a result of sleeping on something too hard and uncomfortable. I came to realize that I am not 20 anymore either: ADR surgery restored my back but it can’t protect me from age-related aches and pains, I suppose.
Conclusion So, what’s the overall verdict at 2-years post-op? Number one, life WILL happen – with or without a broken back. However, ridding myself of the disabling, crippling, soul-sucking pain enabled me to do what needed to be done and be a support for my husband, rather than a burden, when he needed me most. It also prevented me from having to file for disability and losing control over what’s important to me. My LP-ESP is still going strong and doing its job well enough so that I can do mine!
I haven’t really made an announcement, but I just accepted a new position within my hospital as Simulation Coordinator, and I am pretty excited about this opportunity! Everything I worked so hard for during my MSN program and beyond has paid off. I really love healthcare simulation, so this job is the perfect match. In addition, this position will give me bankers hours: 8 am to 4:30 pm, Monday through Friday, weekends and holidays off. That way I can be home with Ralf in the evenings, when he tends to be more uncomfortable, and we can also better plan our lives due to my predictable schedule. However, I won’t be transitioning until the pandemic is over, since my services are needed on the frontline right now.
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.
Have fun, Brian!
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…
Ralf’s progress Quick update on Ralf: recovery is still ongoing and steady, with intermittent set-backs that are mostly related to sudden belly pain, along with persistent nerve pain to his incision site. There are also two hard, sharp “fragments” inside the incision, just where the waistband sits, so we are in the process to have that checked.
Fatigue has gotten better overall, and he has been able to start light activities, such as bicycling around the neighborhood, slow jog-walk intervals, and banded/body-weight resistance training at the gym. I am so proud of him and all his has overcome!
Getting back into the gym Speaking of getting back to activities: I also finally returned to the gym! I must admit, I was a little worried since I hadn’t worked out since last November, and I wasn’t sure how much of my progress had been lost. In fact, the empty parking lot across the gym has now a whole new building on it - still somewhat under construction but still!!! I wasn't here in that long?
To my surprise, I was pretty much able to pick up where I left of. I credit my “robust physique” to Angela’s customized programming and training, which built me up from the ground in such a way that my muscles (small and large) survived a prolonged “time out”. I can still do push-ups from the ground, a couple pull-ups (working on it!), along with weight lifting movements such as back squats and deadlifts.
Now, I've said it before, and I say it again: I am not trying to become an Olympic weightlifter or to win the Crossfit games, but I do believe that moderate weight training is important for long-term bone and muscle health. All the moves I do, the weight I lift/push/pull, and the distances I run feel good! No pain, only gain! I admit, though, that going to the gym is not the most enjoyable time of my day, but the strength and endurance that Angela’s training gives me enables Ralf and me to go on our adventures. And we have plans, lots of plans, for the future!
Getting back to work With Ralf getting better and my own return to the gym, there also came the time to resume work. And sweet baby Jesus, the ED is as busy as it has ever been! My first day back was literally “Oh Hi! Are you back??? Super – Go open zone 15-18 (four high-acuity beds), I just placed two patients there..."Um, ok, I guess there is no time for a welcome-back party, lol!
I did get a very humbling “welcome-back present” though: a couple of days after I started work, I received an email from the VA Public Affairs Department. Apparently, I took care of a veteran just before I went on FMLA, and that veteran was so satisfied with my care that he wrote a letter to the VA about me. Next thing I know, a photographer appeared in the Emergency Department and took my picture to be published in the VA newsletter and Facebook page! That kind of feedback is so very heartwarming, especially since the crazy environment in the ED can make things very difficult. Being able to make a difference in other people’s lives is the best reward one could ever hope for!
Since one of the federal decontamination training events happened in January at the Orlando VA, I had the opportunity to get back into the decon suit and even participated in one of the decon training videos they were shooting! And no, this was NOT specifically related to the Corona virus…
One more stressor this month was related to the national examination to become a “Certified Emergency Nurse” (CEN) that was looming over me. From the day you pay for examination, there is a 90-day window during which the exam has to be taken, or your window of opportunity expires. I signed up at the end of October, thinking that I could study while Ralf was in the hospital. Well, that clearly didn’t happen! My entire focus was on Ralf, and I couldn’t’ even think about trying to study for a board exam!
So, comes January, the deadline approached fast. I had about two weeks now to pull myself together and cram for this 3-hour/175 question exam, which I was scheduled for the day before my deadline ended. I was so nervous that my shirt was soaked in sweat before I even entered the Pearson testing center. To top it all off, this was the same testing center where I took my NCLEX nursing board examination years ago to become a registered nurse. A pretty intimidating process, no matter what exam you are there for, I must say. After I was placed at a computer, I just did the best I could but I wasn’t at all confident when I clicked the “submit” button at the end. But what can I say, I actually passed!!! I even hugged the lady at the front desk check in! So now I am an “MSN, RN, CEN” – and I am also DONE with school or other examinations for a loooong time!
With that being said, work has been very, very stressful, and not being able to be home in the evenings when Ralf’s symptoms usually flare up has been emotionally taxing on the both of us. Those 12-hour shifts are long and draining, but until I get (hopefully) the new position in Education, we both will have to adjust. I am currently waiting for notification of an interview, so I am keeping my fingers crossed!
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 8th, and my
mom and stepdad arrived from Germany on December 11th already! Would
I have planned for this to happen? Absolutely not! But because my graduation
was going to take place on December 13th, 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 13th
(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 27th, 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….
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.
My first clinical group
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.
What the hell...?
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 11th, 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 18th, 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.
PRE-OP
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!
Ponce & Wedding Band
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.
PACU
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.
First Sitting, Lots of NauseaFirst Walk
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…
Before
Day 12
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!
Getting ready to pull the tube!
A new (bearded) 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!
First Solid Food (Oatmeal)
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!
Current State of Affairs I want to start with an update on the most important thing right now, Ralf’s upcoming surgery November 22nd and subsequent recovery. It’s been a very surreal time, and it has been very challenging to not let cancer rule our worlds completely. Since I decided to push on and get my MSN degree done this semester, I have been on a tight schedule: working full time 12-hour shifts on the weekends, doing internship hours either at the SimLEARN Center, the VA long-term care, or via online grading on most days off, and squeezing in some training days as well to not completely neglect my own rehab is taking its toll but I am almost there. The worst of all though is that I really want to spend more time with Ralf before the surgery, but I am always busy running around! I do need my job, income, insurance, and finish that damn degree but my heart wants to be home… can’t quite win there either way. Since this blog is aimed at monitoring the status of my back after lumbar ADR surgery, I would like to add that I could have never even attempted to do what I am doing right now. The crippled state I was in prevented me to put on my socks in the morning, so the stress and activities that I am currently subjected to would have been IMPOSSIBLE prior ADR. In fact, I am relieved that I am still progressing through my training with Angela, even though I have not been able to be consistent with going to the gym. But before I get into the rehab update, I am going to share one life-event we have been postponing for almost 10 years….
Birthday AND Wedding When Ralf and first I met, I knew that he was “it”. We just belonged together and that became very clear early on. He, me, and the Ponce – my family! Looking back makes me realize how much we have shared and overcome throughout the last decade, including adventure racing, learning how to freedive, nursing school (twice!), Ralf’s tenure process, two hip surgeries, and my back-surgery journey. We always wanted to get married but having family overseas and just “life happening” caused us to keep postponing it. Now that we are facing the ultimate challenge, we decided that it was time to “tie the knot”, just him and me and the Ponce. Even though we lost our baby last February, he is still very much part of our small family, and we light a candle for him every night. October 21 marks now two special occasions: Ralf’s’ birthday and our wedding day! We started the day with cake and a candle, but then had to get ready for our next adventure: The Orange County Courthouse! We decided to not even bring witnesses, this was just between him and me, and the real celebration at the Wallaby Ranch will happen next year, same time, when he is all better. There we hope that all our friends and family will gather the way we always envisioned.So, standing in line for security in the courthouse is not a very glamorous process, and most people in line weren’t there to get married, that much was obvious. It was a tad bizarre when my flowers went through the scanner and Ralf had to take off his belt. But after this, it did get much better. The place where we signed our marriage license was not very busy, and the process was smooth. We then took a seat to wait for the ceremony to take place in a separate room, where another couple had just entered before us. There were television screens mounted throughout the waiting room, playing videos with various information, including a thorough introduction on how to get a divorce… that made us chuckle quite a bit. When the lady called us in, I was actually positively surprised: the room was nice and quiet, set up for bringing guests I suppose, and a little podium in the front where the clerk had us recite the wedding vows. Even though it was plain and simple, it was the perfect moment to me – after all, it wasn’t about the “where” but about “to whom” I got married. “You, me, and the Ponce – Always!”
After we said our “I do”, we decided to get out of downtown and back to Lake Nona to have a beautiful lunch at Canvas, including a couple of mimosas for me. Later in the evening, we had tapas at Chromas, sitting outside and enjoying the really nice weather. We debated going to the movies but settled on watching “Crawl” in the comfort of our home instead. Perfect ending to our day – Happy birthday, Sweety!
Training Whenever I Can So, as I mentioned earlier, consistent training has been difficulty due to the internship, doctor’s appointments, and work. I also missed some days where I was just too exhausted or depressed to go work out. However, despite all this, I actually made a lot of progress. I am now able to do a pull-up from hanging position, I started deadlifting to further strengthen my back, and I can do now multiple push-ups from the ground. It feels good, all the movements and exercises I do feel good – no pain at all. I know many (including myself) have a fear of injury due to the ADR implant, but I firmly believe that if the workouts are done right, they are extremely beneficial and will help my spine stay strong and healthy. It is when I stop moving for a while, sitting long hours in front of the computer, that I feel stiffness in my back (upper and lower). On the other hand, coming from a challenging workout always makes me feel better. Besides, I have the best workout-buddy I can ask for since Ralf and I often train together 😊
A Muddy Ride Believe it or not, Ralf and I managed to also get one bike ride in this month. We didn’t go far, and hunting season limited our choices quite a bit, but we spent a couple of hours out at the Hal Scott Preserve. Since the trails were super wet and muddy, this turned out to be a messy adventure. Since Ralf is the much stronger rider, it was more a leisurely ride for him. But for me, I really had to push myself to not fizzle out!
Things that Made Me Smile In all the madness that October had to offer, there were some precious moments that made me smile (besides my wedding). I had a really bad morning one day (it’s been an emotional roller-coaster, and there are many ups and downs right now), and when I got to work, I was really deflated. Then there was that veteran waiting for me to come in: I took care of him a several weeks back, and he came in that day to give me a Coast Guard challenge coin, complete with handshake! He thanked me for my service and my care, which really caught me by surprise. Getting a coin like that is a huge honor, and I kept looking at it throughout my shift, which lifted my spirits a bit. I don’t think he realized what good timing that was…
The other event that made me smile (and shed a tear, actually) was when I got to my internship site at the National SimLEARN Center the day after my wedding. I still have to complete the 180 hours of internship hours prior to surgery, so I had to push on. Around noon, my preceptor nudged me to the back offices to say “Hello to Susie”… , and when I turned the corner, there were decorations, a beautiful customized cake, a second cake, a gift bag, and a card!!! The card was signed by all the SimLEARN staff, who got together to surprise me that day! I don’t even work there, and they went out of their way to make my day a little more special! Here is a big THANK YOU to my friends Susie, Helen, Jennifer, Lugia, and the rest of the SimLEARN peeps!!!
The third surprise I got was an email from the University of Central Florida, College of Graduate studies: I completely forgot about that interview and the questionnaire I filled out sometime in the summer when I was picked as a “featured graduate student”. They only used a snippet of the interview where I talk about healthcare simulation, but I now can be found on UCF’s website and all their social media accounts, lol! Honestly, it is all a bit much right now, but I must say I am proud to leave my mark on this university before I graduate… and I will NOT be back!
Cancer No, it’s not me but the most important person in my life: Ralf. It took me awhile to process what is happening right now, and it feels like living in the Twilight Zone. For those of you who have been reading my blog, you may remember our sea-kayak adventure in August, where Ralf and I combined a trip to Miami with a couple of nights in Key Largo. As it turned out, this was the last outing we did before our worlds completely shifted just a few days later. He has been having very vague symptoms of indigestion and intermittent bloatedness. I do have to say that he’s had intermittent GI issues for a very long time, but nothing major. It was mostly dismissed by doctors as food sensitivities and stress response. But something had changed over the last several months, with his symptoms being much more pronounced and frequent. He was seen by his GI doctor during one of those “episodes”, and do you know what she said? “Guys over 50 don’t have abs, it’s just gas. Let’s do a breath test at the hospital to screen you for bacterial overgrowth”. Really? That’s your diagnosis? Great! I really wanted a CT scan to see if there is some inflammation or maybe diverticulosis that flares up… something like that. So we asked our primary care provider to put in an order for the scan, and he did.
We returned home on Thursday, and Ralf had the CT scan of the abdomen done on Friday. The following Monday (August 12th) was the day before the move to our new place, so we were busy getting things ready and boxed up. Then the imaging center called to let Ralf know that his report and CD is ready for pickup. So he drove quickly to the center while I continued to pack. About 15 minutes later, my phone rings, and after I picked up, Ralf said he thinks he has cancer. Just like that. They just gave him an envelope with the report and didn’t even notify the physician first of the findings. I was so confused and scared, and when he came home, we read the report together. “Severe and diffuse peritoneal carcinomatosis”. I checked the name on the report at least three times because there was no way this was true. Ever! But it was. It is.
The following weeks have been pure hell. I had a resting heart rate of 120, and we found ourselves setting up appointments for more testing and to see a surgical oncologist at Orlando Health UF Health Cancer Center in Orlando. This whole process was (and is) just a complete nightmare, with PET scans being scheduled, then the order wasn’t right, then the machine broke. Incompetent and insensitive schedulers who make things even more stressful then this experience already is! And you have no choice but bumble along, test after test, appointment after appointment. I am just glad that I am not crippled anymore, I can’t imagine going through this with a broken back on top of it.
Fast forward to current affairs: we didn’t continue care at Orlando Health because they are just not able to provide the necessary care. Ralf’s cancer is so freaking rare, only two people in one million (!!) get this! There is a very complex, long, and invasive surgery for this type of cancer, and you really need a surgical oncologist who has a lot of experience with this. We had our second opinion done at Moffitt Cancer Center in Tampa, which is one of the top cancer centers in the country and decided to go with them. If all goes as planned, Ralf’s surgery will be on November 22nd, then 10-14 days in the hospital, followed by recovery at home. He is strong, we to this day go to the gym together, trying to keep some healthy routines going and keeping him as fit as possible to battle this beast! And he will!
I took this clip a few days ago at the gym, does that look like a cancer patient to you? Hell, no!
Pushing On As I mentioned earlier, we are trying to not have this diagnosis take over all aspects of our life. It is often Ralf, though, who makes me go to the gym, even though I have missed several workouts due to circumstances. We went to Ikea to buy some furniture for our new place, we went on a 11-mile bike ride through Lake Nona, we hang pictures on our wall, and we even went to the Food & Wine Festival at EPCOT a couple of Sundays ago (thank you, Bonnie, for the tickets).
I am still working full-time in the ED but it has been hard. I have that little “ball of panic” that lives in my chest now, and when I get overwhelmed, it gives me palpitations and chest tightness. No, my heart is fine, just not the circumstances. I need to save all my time off/sick leave to be able to take off work after the surgery. Being able to work-out has been important, even though I often don’t feel like going. My back, arms, shoulder, and legs really have improved since I started training with Angela, and I just graduated to the “next phase” of my training. I said it in previous posts, I really don’t want to become an Olympic weightlifter but lifting and squatting is so important to bone and muscle health. So here I am, doing my first back squats… and they felt really good!
Internship/MSN completion As if things weren’t intense enough right now, the universe had to throw in another level of stress: 180 hours of internship, to be completed by mid-November. That is while working full-time and coordinating appointments. After this semester, I will graduate with my Masters in Nurse Education. I initially wanted to drop this internship, but Ralf insisted that I see it through. If all goes as planned, I am actually going to pull this off, but it is taking its toll.
