Skip to content

Category: Rehabilitation after ADR surgery

Initial rehabilitation after lumbar Artificial Disc Replacement (ADR) surgery and regular blog post updates on ongoing recovery.

1

Published on 1 Comment on 2 Years 5-9 Months Update: Made it to the end of 2020, somehow…

In this Update:

  • Summary of Current Affairs
  • Clear Passage
  • Germany-Part 2
  • Hanging in There for Now

Summary of Current Affairs
This has been the longest break between updates ever. I just couldn’t do it – even though maintaining this blog and reflecting on life has become very important to me, I just wasn't able to sit down and focus. Somehow, it has all been a bit too much lately. Living in constant fear of getting Ralf sick, even when going to the stupid grocery store, the inability to go to retreats like the theme parks, getting my teeth cleaned at the dentist, or just getting a simple hair cut has really left a mark. In addition, having to witness Ralf’s’ ongoing set-backs (his weight was 140 lbs at one point) without being able to do anything about it, along with dealing with the aftermath of the Germany disaster kind of topped it all of.

I have reached the end of my (mental and physical) capacity, for now, until I figure out how to recover and find some joy and hope. Anticipating "the next shoe to drop" on a daily base can truly take the fun out of life. However, I do enjoy my new job in the Sim Lab very much, even though I now must telework a lot more due to the rise of COVID cases. I also am grateful not to be disabled with a broken back on top of everything, which would have prevented me to do a lot of tasks the way I did. I do feel sore – all over sore, and I haven’t worked out much at all. I just couldn’t get myself to do it; it's hard to explain. But I believe that after I get my overall health into a better state, the body will follow.

Every so often, when Ralf feels ok, we would go for a bike ride, or a hike. It's nothing like what we used to do but it gets us out of the house every conce in a while...


Clear Passage
It has been a struggle to get the adhesion treatment approved and scheduled by Clear Passage, to say the least. Insurance doesn’t pay for it, so the $7,500 came out of our pocket. But that truly doesn’t matter, it needed to be done for sure! Ralf’s health has been declining rapidly, with excruciating abdominal issues, pain, and fear of yet another episode during a time where going to an ED would be a disaster, due to the fudging pandemic. When Ralf finally was confirmed for the second week of August, he was a mess. Yes, he “beat cancer”, but the shocking aftermath of this radical treatment has robbed him of quality of life beyond measure. He was so afraid to eat, and there was no rhyme or reason to what he would eat and how his body would respond to it.

Long story short, we arrived in Gainesville on a Sunday, after a 2 hour drive, and checked into the guesthouse of the owners from Clear Passage. The accommodations were pretty amazing and even included a pool, a theater-like set up in the living room (including 10 leather recliners), and a full kitchen.

  • Main house
  • Guest house

At one point, the owners invited us on a mellow boat ride in the evening, which was a nice way to get our minds off the constant worrying. Plus, there were three happy Golden Retrievers on board, making us smile.

Over the next five days, Ralf would have four hours of therapy per day. It was painful at times, but the treatment really helped a lot to restore digestive function by “rearranging” and manipulating the adhesions that are strangling his insides.

With that being said, Ralf was a lot better after the therapy, and he still does his “homework” every single day as instructed. However, the fear of episodes remained, and he had some scary set-back weeks after, which we were able to manage at home though. I was just hoping with all my heart that this was the final treatment to restore his well-being, but it appears there is still a vital piece missing…

Germany: Part 2
Well, as events unfolded, I had to leave Ralf’s side yet again to tend to the crisis in Germany. My mom was just a few days away from moving into her new (assisted living) apartment, but she was so helplessly overwhelmed. I was hoping to delay more international travel due to the pandemic and Ralf’s state of health. But after a FaceTime call with my mom, where I actually took a screenshot because she looked so bad, I had to make this most difficult no-win decision: leaving Ralf behind, or abandoning my mom.

Distressed

So, I needed to get to Germany to make sure things were taken care off. With very mixed feelings, I booked my next flight. At least upgrading to business class is much cheaper these days, so I did my best to “social distance” on the plane. I also did a rapid COVID test the day before to make sure I am not sick without symptoms.

  • Waiting for my flight
  • Empty airport in Frankfurt

As mentioned before, my mom moved into her new place about a week prior. My goal was to find a good routine with her, put resources in place, and practice with her to pick up Karl-Heinz, who lives now in the nursing home portion to the DRK. My mom’s apartment is actually in the same building as Karl-Heinz’s unit, which would be so convenient if she could just walk down the hall to get to his unit. However, due to COVID, she wasn’t (and still isn't, of course) allowed to do so and instead has to walk all around the building to the other entrance to pick up Karl-Heinz (after making a reservation).

At this point, it was also time to reunite Bella and Karl-Heinz. She hasn’t seen her master since the stroke happened in July, and now she is in a new place three months later. I arranged the first meet outside, and it went very, very well. Karl-Heinz and Bella were so excited, and he cried when we brought him back later that day.

My mom and Bella were so exhausted after the reunion that both fell asleep right away…

Before I left, I made sure my mom had a good routine with Bella, including a nice path to walk her. I also took her to a new primary care doctor to establish care and to make sure she was ok. I am very proud of her, because she is now able to manage the wheelchair by herself and shuttle Karl-Heinz between her apartment and the nursing home without major issues.

  • Walking Bella
  • At the Doctor's Office
  • Picking up Karl-Heinz
  • Spending time in the new place
  • Perfect selfie

I also signed the sales contract for the house, dealt with the court system, and mowed through the mountains of paperwork to figure out banking, utilities, and insurances.

I think I did my best to put most important resources in place and deal with all the legal issues involved in the transition. So, when I traveled back home, I felt better about the set up than before. But now I had to switch gears and focus on Ralf’s health and my work again.

I did make sure that I was home in time for Ralf's birthday, which also marks our first anniversary. We celebrated at home, of course, eating take-out from the same restaurant we went to after our wedding.

I also did my civic duty and went and cast my vote at an early-voting location in Orlando.

Hanging in There for Now
Life is difficult, life is hard. Wise words of my late friend Libby, who died in August 2020 after losing her battle with cancer. Life even gets harder when a global pandemic destroys any chance of normalcy. Getting screened for infection and having my temperature taking prior to getting to work has become the new normal.

I was hoping to be able to fly back to Germany around Christmas time because this is the first Christmas since the stroke, the move, the forever-changes. But as people continued to dismiss precautions, the virus has been on the rise, causing another lock-down that started in December in Germany, spanning over the holidays into the new year. COVID has also been spreading like wildfire throughout the US. Therefore, I wasn’t able to go. It was the first year ever where my mom had to spend Christmas alone. At least she has Bella... Despite all this, Ralf and I decided to get a tree after all, even though I really wasn't in a merry mood.

Karl-Heinz wasn’t allowed to leave his unit to stay at my mom's place for even an hour, but at least the staff in his unit organized some holiday events (photo was emailed to me from the nursing home administration).

Ralf continues to struggle, and it breaks my heart because he did EVERYTHING he was advised to do, but his life is still without much quality. The mainstream healthcare system is truly letting him down, and nobody appears to be able to help him. Other follow-up interventions included treatment for PTSD and anxiety, new medications, seeing a functional training coach, and other PT treatment (with micro-currents for the scar tissue). So far, every treatment has helped to address some pressing issues, but he still hasn’t found the “final piece of the puzzle” that would enable him to have true quality of life again.

At least we made it through this horrible year. Somehow. I am grateful for the outcome of the US election (after much drama), but it will be a long way to counter some of the damage done to this country.

For now, I will focus on the only thing I have some control over: my work. Due to the rise of the virus after Thanksgiving, I was issued equipment to work remotely.

Even though I am teleworking most days right now, I still get some hands-on activities here and there. I even created a thyroidectomy incision for a simulation, which significantly increased my appreciation of surgical suturing.

  • DIY moulage
  • Patient Fred
  • Trauma Bay

I also was fortunate to receive my first COVID vaccination on December 18th, with my second shot scheduled for January 11th, 2021. Maybe, just maybe, this could be the beginning of the end of this awful pandemic that has made tragic life events even more intense.

  • Check in preparations
  • Post-shot observation area

Published on Leave a comment on 2 Years 4 Months Update: 2020 is Not Done Yet!

In this Update:

  • Getting the Simulation Lab Functional
  • Enjoying More Outings
  • Disaster Strikes Again

Getting the Simulation Lab Functional
As I mentioned in my previous update, the Simulation Lab I inherited was a… what can I say, hot mess! And since there was nobody to orient me, I just started with doing inventory to see what I was working with. It was mayhem! All my (very heavy) manikins were sitting on tables, my second CentraLine task trainer was AWOL, and the new group of internal medicine residents were about to start their rotation, needing the services of the Simulation Lab, in a couple weeks… No pressure here! Thank goodness for my strong connections to the adjacent National SimLEARN Center, where I borrowed two amazing Sim Techs to help me update and troubleshoot my equipment!

  • Otto
  • Fred

Even though things were a mess, it also gave me the opportunity to make this lab my own. I figured out things on the fly, identified my allies, found necessary resources, developed a grant proposal to replace much needed items, networked with a lot of departments and specialties to increase training opportunities and add to the curriculum, hunted down data to back-track utilization, and implemented a new tracking tool. Then I created post-simulation evaluation forms, sign-in sheets, and helped develop high-fidelity case studies. I am also working on the application to re-certify the Simulation Lab, which is due in October…

I can’t say I have been bored. My direct supervisor told me at one point that I accomplished more in three weeks than others in six months… Well, this came in handy when disaster struck later that month…

Enjoying More Outings

Since I now have a consistent schedule, where I am home in the afternoon, and with all weekends off, doing things on my days off has become much easier. Ralf and I have continued to have some outdoor adventures, despite the daily rain and steaming heat.

Disaster strikes Again

As it turns out, this awful year of 2020 is not done yet, as the next disaster occurred. On July 8th, my mom called me in the evening to let me know that Karl-Heinz was in the hospital. When she was looking for him to eat dinner, she found him undressed, on the floor, with altered mental status. She was trying to get him up but when that didn’t work, she called the neighbor for help, who in turn called the ambulance. It was so heart-breaking when she described to me on the phone what his symptoms were… I looked at Ralf and said “he had a stroke”. My mom didn’t even know which hospital they brought him to, so I googled the area and called to most-likely place. Even though they wouldn’t give me any information over the phone, it was confirmed that Karl-Heinz was in intensive care at their hospital. I gave the nurse I talked to my mom’s phone number, and a doctor called her within the hour.

What really upsets me about the German healthcare system is that it appears to be stuck in the 1960s. Nurses have no autonomy and limited scope of practice, and doctors are the “gods in white”. Family is not really included in the care, so nobody will give you information or explain things that can be understood by non-medical people. In fact, it wasn’t until the next day when I finally was authorized and able to talk to one of the doctors that I realized how bad Karl-Heinz’s condition was. And of course, I had to explain it to my mom, who still didn’t quite understand the magnitude of the circumstances. I made her cry, and it broke my heart. So, Karl-Heinz suffered a massive stroke, caused by a third-degree heart block that resulted in three blood clots that then traveled to the brain, bringing on the stroke. He had been unconscious for the first week, so when I arrived the following Monday, he didn’t even open his eyes.

I felt really bad when I had to let my new boss know that I had to go to Germany in a couple days. Even though I only started in the Education department three weeks ago, she was so accommodating, getting my FMLA filled out and approved within one day! I was even cleared to take my government laptop to telework, since I didn’t have much leave left. On Sunday July 12th, I was sitting in the Orlando Airport, mortified of flying international during this deadly pandemic, and worrying about possible quarantine when I got there.

And don’t think that United Airlines would leave the middle seat open: the flight to Frankfurt was packed! However, I booked Economy Plus on way there, so I was facing a wall ahead, and the lady next to me was a mother of a young child, so she was facing mostly the other way. There was also a sweet puppy on board, on her way to Italy.

When I arrived in Germany, I was so very anxious about what would happen next. I was standing in line at immigration, and when I handed over my Germany passport, the officer just wished me a good day!!! No questions about where I am coming from (a Corona hotspot!), so I grabbed my belongings and bee-lined to my connecting flight to Hamburg. Such a relief!

I arrived in Hamburg around 10 am, and after collecting my luggage, I was picked up by my mom and the neighbor’s son in law. It was so strange, since it was always my mom and Karl-Heinz who would great me at the airport. But not this time, not ever again… It takes about 1 ½ hours from the airport to Wesselburen, and after we arrived, I freshened up and drove to the hospital to see Karl-Heinz that afternoon.

It was bad. So bad. My mom was so lost as we were sitting at his bedside. Karl-Heinz wasn’t conscious but combative, so they had to restrain him. Staff wasn’t able to provide any hygiene care, and since the stroke caused significant dysphagia, he already had a PEG tube placed on day two. He also had a pacemaker inserted to fix the heart block. Stupid, uncontrolled hypertension! I always told him that this can have serious consequences if he doesn’t get his BP under control – but it is what it is, and even though I was angry on some level, I felt so very sorry for him.

I had less than two weeks to figure things out and put resources in place. My mom doesn’t drive and is pretty much dependent on others in that little town she never quite liked to live in. I needed to find a solution for her living situation since she can’t (neither does she want) to live in that house with that enormous yard that turns into a jungle during the summer. And Karl-Heinz – he will need a nursing home placement from what I could tell. What a giant mess!

First of all, the house was a disaster on its own. Little did I realize that Karl-Heinz was kind of a hoarder, so instead of throwing stuff away, he would throw everything in either the attached utility room or the garden shack. When my mom told me, I took a look and swallowed hard. How on earth am I going to clean this up? So, the handyman neighbor and I worked two days, emptying out the trash and sorting things out to be picked up by the waste company.

Before...

...After

Next, my mom was asking me if I could try to open the freezer. She said that she couldn’t get it open anymore, and so they left it like that for over one year!!! They just stopped using the freezer… It took me almost an hour to pry that thing open, with the aid of hot water and my old Udo Waltz hair dryer. In fact, I landed on my ass when the door finally popped open. What I found behind was solid ice. I mean, that thing had a solid wall of ice where the door used to be! So Udo Waltz and I got to work, and between the heat, a wooden spoon, and hot water interventions, I managed to defrost the freezer. It was still full of food, which had already expired for the most part….

  • Before
  • After

We went to see Karl-Heinz every day in the hospital, and the following week he finally came around. But boy, this was awful. He was awake and alert but stuck in his own body. He can’t talk, can’t eat, is incontinent, and his right side is paralyzed. Whenever we came into the room, he would look at us, look at my mom, then his left hand came up, grabbing her hand, and so she would sit for the hour we were allowed to visit. When he finally was transferred to the neurology floor, he was well enough that his restrains could be removed. Baby-steps I suppose.

I know he was anxious, a busy body, while lying in that hospital bed. I brought him a heart: a red stress ball that I had squeezed all the way across the Atlantic Ocean. I put it in his left hand when we left, and he still held it when we came back the next day.

I was trying to figure out how my mom could get from Wesselburen to Heide without a car. It’s about 18 km, so taking a taxi was getting way to expensive with about 60 Euros/day. My mom is very insecure when exiting the train due to the giant gap between the train car and the platform, so even though this option was cheaper, it didn’t work. So, I found the number of a group of neighborhood volunteers, who help other with errands for a nominal fee. Luckily, there was one driver who agreed to drive her EVERY DAY to Heide, wait there for an hour, and take her back. What a relief!

Another stab in the heart came in the mail: Karl-Heinz got a ticket for driving over the speed limit, and in Germany, they always have a picture they mail you as proof. Here he was, behind the wheel, just a few weeks ago. Now I have to figure out how to sell his car because he won’t be driving it ever again…

In the meantime, I was still trying to get rid of empty bottles that I found in the shed and shack. In Germany, plastic and glass bottles need to be returned for a refund. I had bags, upon bags, upon bags I had to return – it ended up to be a total of almost 100 Euros in refund! Some bottles were so old, their content expired in 2013…

At that point, I overcame my fear of driving a shift stick in Germany, something I hadn’t done in 20 years!!! But after I got over myself, I was very happy that we were somewhat independent again.  

Then the biggest miracle happened: as I was calling nursing homes around the area, I ended up calling the Red Cross institution in Büsum, which is a cute tourist town right at the North Sea. My mom said, “don’t even bother, they won’t have anything open”, but I was desperate. I talked to that wonderful lady, explaining what had happened and what I was looking for: an assisted living apartment for my mom, and a nursing home placement for Karl-Heinz. The lady was a little hesitant but then said that they actually had an apartment becoming vacant, and there may be a place opening up in the nursing home as well!!! This was like winning the lottery, and I know that we were given an (unofficial) break – and I will be forever grateful! The next day, we had an appointment to look at the place and it is perfect! My mom loved the apartment AND she is allowed to bring the dog! Plus, I don’t have to worry too much because it’s assisted living, so my mom will have resources when she needs them. In addition, she can just walk over to the nursing home section, pick up Karl-Heinz in a wheelchair, and bring him on outings or to her place. Under one roof after all, so I consider that the best possible scenario based on the circumstances…

My last task at hand before I had to fly back home was trying to file a petition with the courts get control over Karl-Heinz’s financial assets. Because of my black-sheep brother, my mom didn’t want anything in her name. I was put as the sole heir of Karl-Heinz if he was to pass away. Apparently, nobody saw this scenario coming, and since there is no legal regulation in place, I have to now try and get a judge to give me the ability to sell the house and the cars. But that I will have to deal with after I return home for now…

Flying back home was hard. Leaving my mom behind with the situation made me feel like I am deserting her – despite the resources I managed to put in place. When she cried at the airport, it just tore me apart, but I had to get back home to Ralf and my (new) job as well. The airport in Hamburg was actually very safe: people in line for security were social distancing, everyone was wearing a mask and followed the rules. But as soon as I stepped of the plane in Orlando, all bets were off!!! Tourists with their kids everywhere, masks were worn or not, and many just jaywalked as they pleased. What a difference to Europe, where I actually felt relatively safe…

Published on Leave a comment on 2 Years 3 Months Update: Long Overdue

In This Update

  • Good-Bye Emergency Department – Hello Education!
  • Having a Predictable Schedule

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!

View
Me
You
  • Triple N Ranch

Oh, we also finally got out new juicer....

.... And new "pets"!

Published on Leave a comment on 2 Years 2 Months Update: Living in a Strange World Now

In this Update:

  • Life in Isolation
  • Running Again!
  • Happy Birthday - Pandemic Style

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!

Published on Leave a comment on 2 Year 1 Month Update: Live During a Global Pandemic

In this Update:

  • 2-Year(ish) Follow-up X-Rays
  • Being "Essential"
  • Trying for Some Normalcy

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 mask
Leaving 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.

2

Published on 2 Comments on 2-Year Anniversary: Global Pandemic Disruptions

In This Update:

  • The Good
  • The Bad
  • Conclusion

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.

Please stay home, stay safe, and stay healthy!

Published on Leave a comment on 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.

  • 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…

3

Published on 3 Comments on 1 Year 10 Months Update: Getting Back to Normal(ish)

In This Update:

  • Ralf’s progress
  • Getting back into the Gym
  • Getting back to work

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!

Iris Appenrodt, MSN, RN, CEN recognition for going above and beyond in patient care.

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!

Published on Leave a comment on 1 Year 9 Months Update: Intense Times toward the End!

In this Update:

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

Discharge from Moffitt

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

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

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

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

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

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

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

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

Family and Graduation

We got discharged on Sunday, December 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….

2

Published on 2 Comments on 1 Year 8 Months Update: MSN & MOFFITT – The Ultimate Battle of 2019

In This Update:

  • Internship/MSN
  • CRS/HIPEC Surgery at Moffitt

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

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 Nausea
First 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!

Copyright © 2018 Iris Appenrodt, All Rights Reserved