Last MCI I’ll be honest: when I was asked by the (new) Orlando VA Emergency Management (D50) person in charge to not just help plan, coordinate, and participate in the Mass Casualty Incident (MCI) community disaster drill, but to be a Nurse Lead for the event, I was not sure what to say. After what happened to me in my previous position, which prompted my transfer to SimLEARN, my first impulse was,” yeah, no, thank you, I'll pass”. However, I also knew he needed help from a D50 nurse, who has had experience with those MCIs and the common pitfalls and challenges associated with it. That, and being supportive of my friend Bonnie, who also was filling the role of Nurse Lead but couldn’t possibly tackle that beast alone, led me to accept. And since the Orlando VA is in VISN 8, which belongs to my Engagement Group responsibility in my mentorship-role at SimLEARN, it was still technically associated to my new position.
To make a long story short: I have done these MCI events with the Orlando VA since 2014, so I know what I was getting myself into. Historically, it was always the same limited group of D50 team members, who would actually show up. Supply carts we painfully put together (mostly Bonnie and I over the years) would be a hot mess when they reappear from some forgotten storage area, and now that a couple years had passed without taking out the tents and supplies, it was even more frustrating. Between COVID and the long stretch of no team-training activities, we lost some key-members. That left us with mostly untrained members, who were not familiar with MCI guidelines, decon, and/or disaster triage protocols. I strongly suggested a dry-run to leadership (as in, take out the tents, set up the equipment, etc.), but that didn’t happen… Oh well, I tried.
I am not going into details, but Bonnie and I ended up running around, filling in a variety of roles to get us through… at one point, I heard my name being yelled from five different directions, but I just can’t split myself in half. Somehow, we made it through, but it wasn’t pretty.
No, no, no, you can’t park here!!! Still waiting for decon to be ready to go…Well, I guess I will transport the victims to the treatment tent myself… … AND I will do the assessment, no problem
I was just glad that nobody got actually injured, and at the end of the day, we had all teenage victim volunteers accounted for…
Aaaand, it's a wrap!
Last Good-Bye When Mikey passed away last year in August, it was one of those “it can’t be” moments. I am so grateful that Ralf was able to make that trip to Tampa a couple days prior, to say good-bye, but given the fact that Mikey was taken so quickly after his cancer diagnosis, this still hits very close to home. Cancer is an asshole. And Fay? She got cheated out of many years of spending her retirement with her mate. So unfair. Mikey was special and left a huge void. April 2022, the Wallaby Ranch hosted the “Mikey Barber Memorial Boogie”, celebrating his life and the legacy he left behind in the hangliding community. I do believe he would have been so pleased, bringing together hundreds of friends and family, some of whom flew in from around the world, to spend time together and remember the many stories surrounding him. There was an amazing live band playing, great food and drinks, dogs and kids running around, people laughing and sharing stories. A special day for a special person. Bitter-sweet for sure. But I am glad Ralf was well enough to go and not just honor his longtime friend but also reconnect to the Wallaby Ranch community. Time is precious.
It was already getting dark outside when we had to leave, and just at that moment an enormous tree was lit up (I am still puzzled how they wrapped it in lights like this). A magical moment where the real world doesn’t seem to exist. We love you, Mikey!
Welcome, Coco! As I said before: time is precious, so what are you waiting for? Ralf has been debating on getting this new Curve bicycle, which is made in Australia. He has been flip-flopping between “I really, really want this bike” and “how can I justify spending so much money on a bike when I may not be around for much longer”. To me, those moments were the most heartbreaking ones. True, due to the nature of his cancer, nobody has been able to give us a prognosis. Could be 6 months, 5 years, 20 years? But you know what? That is EXACTLY why he should buy this bike NOW. Tomorrow is not guaranteed for nobody, so if that brings you joy, go for it!!! After a year of back and forth, along with supply issues, the Curve bike finally arrived.
Ralf still had to drop off the frame to JC’s Bike Shop in Deland, where Ryan was on standby to get to work and assemble the final product. Then the day had come: we got the call that we could come over for Ralf to test ride and pick up his brand-new Curve bike!
Ready for the virgin voyage!
So, I have the habit of naming things. I really don’t want to, it just kind of happens by default. However, since this was Ralf’s baby, I wanted him to name his new ride (yup, my habits may have rubbed off). Unfortunately, I already named her (in my head) the first time I laid eyes on the frame, which sports a beautiful Cockatoo on the stem… Coco!!! While I told Ralf that he should name his new ride asap, I started to refer to her as “Coco”. Ralf would usually reply with “her name is NOT Coco!”. A couple weeks later, Ralf said to me, “I need to bring Coco back to the bike shop before the Forgotten Florida ride…”, it was settled I suppose. Welcome home, Coco!
New Hope for Ralf
Ralf’s GI issues, abdominal pain, and inability to even consider international travel because of the unpredictability of his symptoms, among other considerations, has left such a negative impact on our quality of life. He has been to multiple GI specialists, but nobody was a good fit or offered different approaches. Then I saw an ad from Orlando Health, advertising a new GI section at their facility, promising the best of the best. Ironically, it was around that time the Ralf’s friend Brian also complained of ongoing, debilitating GI issues, so I mentioned that place to him. He actually made an appointment for the following week and really liked the specialist he ended up seeing. We decided to give Dr. Gosalia a try – but to be honest, I wasn’t really getting my hopes up. We had been disappointed too many times… But as it turned out, this GI specialist was refreshingly different! And he was even familiar with Ralf’s rare diagnosis and brutal CRS/HIPEC surgery. It appears that he understood the physical and mental toll all of this had on Ralf. And, he offered different solutions: an new drug, Motegrity, that is still very new on the market (no generic) but has shown great results by affecting the “gut nerves”. Ralf has been on this med for a while, and it really seems to make a difference… new hope at last!
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.
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!
I am going to start by saying that I almost didn’t write an update for this month at all. This year has been emotionally draining, first with Ponce passing, then my dear friend’s daughter passing, while struggling with school and work obligations. I kept thinking how horrible 2019 has been for so many people, and that the year is not over yet…. Little did I know. I am not ready to share the gruesome and scary circumstances that came to light on August 12th, but we are facing the hardest challenge of our lives right now, and I am mentally and physically in a pretty intense state. And no, it's not related to my back (which is fine).
With that being said, on Ralf's insistence, I will try to focus on the good times we had this month, which was all about water.
Water-Bound via Sea Kayak During the second week of August, my annual leave officially started, and Ralf and I decided to use this time before the move to our new place to travel to Miami – a four-hour car ride - to renew his German passport. Those pesky Germans make you go in person every 10 years, and this year was his turn. The process has usually been very painful and frustrating but I must say that the consulate actually did a pretty decent job processing the paperwork without adding more gray hair to my head.
Welcome to downtown Miami!
And this is the obligatory photo-op from the women’s bathroom of the German Consulate…
From the 22nd floor
Since we already made it all the way to Miami and had some time off, we decided to spend a couple of nights in Key Largo to do some sea-kayaking. We drove another 1 1/2 hours to what we expected to be this nice, tropical environment but were a tad disappointed. Driving into Key Largo was no different than driving into Cocoa Beach, a little run down, with lots of junk sitting around and adult stores down the street. Not the type of entertainment we were looking for….
But we made the best lemonade our of this lemon when we got a private tour arranged with an outfitter that rents out pretty nice sea kayaks. This was our first-time kayaking adventure, and I was a little concerned how my back would feel after sitting in one position in a tight space while using your feet to move the rudder. But kayaking turned out surprisingly more stable and manageable than I thought. Even getting in and out was not as difficult as I anticipated.
Our awesome guide Andrew took us through mangroves out into the Atlantic Ocean, where we spend 3 hours exploring. The water was clear enough to see the bottom, which is very different to being on a lake with much more murky water.
One special moment that I found very amusing entailed a couple of dolphins rounding up a school of herring. As we tried to paddle closer to the action, I suddenly found myself surrounded by bubbling water – kind of like a Jacuzzi – and something slapped me in in arm. Next, I see this herring jumping out of the water and right into my kayak! As the poor fella flopped around the bottom, all I was able to say was “fish!!!” I tried to catch it with my hands but that was easier said then done, especially while seated in a kayak. I used my paddle to prevent the herring from flopping away into the front while Andrew made his way over to me to snatch and release my distressed passenger. I hope the dolphin didn’t eat it after that, but I think it made it with most scales in place.
Another nice aspect of our stay in Key Largo was the nice restaurant with outside bar right at the water (marina) that was within walking distance, so we both could indulge in some adult beverages.
After a two-night stay, we drove back home – 5 ½ hours through multiple thunderstorms – to start preparing for our impending move to our new place. When you see what you are driving into…..
... And there is nothing you can go about it! Oh, well... here comes the rain again...
Moving Because our leases overlapped by over one month, we didn’t have to move within a day or so, which helped a lot. Nevertheless, moving is still pretty stressful, especially if you are moving out of a two-story town home. We both got our exercise in that way for sure. To save some time and money, Ralf and I moved a lot of the boxes, kitchen stuff, etc. over to the new place ourselves. Only the heavy and bulky furniture we left for Two Men and a Truck (there were actually three men, but who’s counting). They did a great job, and the main move went pretty smooth.
We still have to clean up the old place, but we are mostly done and ready to turn in the keys. I really, really like our new place, just the current circumstances prevent me from enjoying it much at the moment.
Anyways, all the activity between the long car ride, sea-kayaking, and then moving didn’t bother my back at all. Sure, I am sore after certain things (including running up and down two stair cases all day long), but nothing pathological or unusual.
Water-Bound via Packraft Shortly after our main move, Ralf’s packraft finally arrived. Believe it or not, but this raft only weighs four pounds, folds up to small bundle to be carried on the bike, while being able to strap said bike to the front of the inflated raft to cover some distance by water – packrafting it is! Since our new living area is so nice and open, we were able to inflate the raft inside – much to the joy of Ralf!
The next day, we gave it a try at Moss Park on Lake Mary Jane. Since last year’s hurricane, the beach area of this lake has been permanently closed. So we just went on the side of one of the canals and put the raft into the water. Let me just say that paddling in a packraft is very different compared to a sea kayak. It’s more demanding on the biceps, and fighting currents and winds is also more of a challenge. But it was a lot of fun, and Ralf and I took turns until the incoming thunderstorm ended our first packraft outing.
A couple days later, we returned to Moss Park for a more extensive outing. A very funny moment came to pass when the ranger at the entrance eyeballed our half-inflated red raft in the back of our vehicle. She asked us if we were planning on going on the water, and we said yes. She then was quite worried and urged us that under no circumstances are we to launch from the side of the canal or any other unofficial place due to alligators (oops, we kind of already did that a couple days ago… oh, well). We were instructed to use the official boat ramp, located a little further up from where we launched previously. Since we didn’t want to cause any trouble, we parked by the boat dock, inflated the raft, and carried it over. And what do you think we found? The ONLY alligator, sunbathing in the middle of the boat ramp!!!
Ralf had to shoosh him away (I missed to film that
adventure), and after the gator swam off into the canal, we were finally ready
to get the raft into the water. This time, the weather held up nicely, so both
of us were able to take turns and paddle all around the island located within
Lake Mary Jane.
PS: the gator never returned….
Getting Ready for Hurricane Dorian (More Water) Now that September is approaching, so was Dorian. We really, really could have done without a category 5 hurricane, snailing its way toward Florida’s east coast. To be honest, it wasn’t so much the hurricane (ain’t our first rodeo) but the impact on schedules and important appointments. Two years ago, Ralf, Ponce, and I stayed at the hospital because I had to work during the storm but this year, we were hunkering down together in our newly boarded-up home. It’s like living in a cave for five days… Getting these shutters up turned out to be a major project, and the bags of mulch were no joke either. Did I mention that it’s still super-hot and humid in Florida right now?
In addition, we just kind of plopped a lot of our stuff down all over the new garage. Now we needed to make room for two cars to fit. I suppose, the upside of Dorian was the motivation to get the garage organized and shelving assembled…
Garage before…
Garage after!
Today is Wednesday, September 4th, and Dorian came and left. Our friends who live closer to the coast got hammered by a lot of rain and wind gusts, but Orlando was spared for the most part...
I feel for those poor people in the Bahamas, who undeniably got the full wrath of this hurricane.
Since we didn't get to eat any of our hurricane foods, we are all set for the next one...
Getting Stronger! So, I can proudly announce that I have been working out (mostly) in a very consistent way! Even though my schedule continues to throw me curveballs here and there, I have been going to the gym at least twice a week (with a few exceptions). I have made slow but consistent progress, which I really wasn’t aware of at the time until my latest push-up day on 07/26: I started out with doing incline push-ups in late May using a box because I was too weak to do them lower. I have reduced the height/incline over time but on this day, Angela instructed me to only use one bumper plate. I wasn’t quite sure about that, but as it turns out, I got significantly stronger over the last two months!!!
Here is a short video of me doing push-ups on the box on May 20th….
… and here is the result of consistent training on July 26th!
I suppose, this would be already exciting for someone who just want to get in shape but to me, it is a freaking miracle! Before my lumbar artificial disc replacement (ADR) surgery, I would have fallen flat on my face and remained in that position if I attempted this move. But now, it feels great!
Angela also added a new move to my routine to further build up my shoulders and core: Prone Barbell Rows.
... which is an upgrade from the single-armed dumbell row...
Mind your Step Ralf and I managed to visit a couple of wilderness preserves as well. However, this time we explored by foot rather than by mountain bike. You see, Florida summers are rather water-filled, and over the last few weeks we had so much rain that I was about to suggest to built another arch, just in case.
Our first outing was to the Seminole Ranch Conservation Area (not a place many people tend to go). It was pretty hot and steamy, but the jungle-like vegetation and beautiful wildlife (especially birds) made it all worth it. The trails weren’t very technical but they ended up to be flooded at times, which is nothing new, and this wasn’t the first (or last) time I was wading through ankle-deep puddles.
I am still laughing out loud when I remember the following scene though: As I am walking down my side of the trail, I see something colorful laying right in front of me.
Me: “Oh look, is that snake skin?” *as snake is lifting its head* Ralf: “Yeah, with the snake still in it!!!”
Turns out, this was a Pygmy rattlesnake, and they are indeed venomous. As I slowly step around the snake, Ralf steps a tad closer to make a positive ID. What he didn’t realize was that he was now standing in a fire ant hill! Let me tell you, these sneaky little bastards don’t bite one at a time, they all crawl on your ankle and bite at once, so you won’t know it until it is too late. I am still wondering if that was a joint operation between the ants and the snake…
Our second outing was at the Isles of Pines Preserve, which is only 10 minutes from our house. Not many people come here, so the trails were pretty overgrown at times.
This hike turned out to be a real workout: not only were the trails overgrown, but they were significantly torn up by pigs, in addition to the ground being soft and squishy, which is apparently a great way to exercise your ankles and calves…
But at the end of the trail awaits a gorgeous lake (Lake Mary Jane), so that makes it all worth it! However, my ankles were so sore the next day, I had a hard time climbing stairs!
No more Grades Sooo, I turned in my evidence-based research paper on July 17th (45 pages of glory!), and on July 31st, I had to present my evidence in person in front of my peers at the University of Central Florida! It felt quite strange when I drove onto the College of Nursing campus parking lot, as I had done hundreds of times before, years ago during my BSN program.
I was pretty stressed out, even though it was my own research paper that I should be VERY familiar with, but still, I am (and always have been) a stress muffin!
Now the semester is over, I got my A (hallelujah!), and the next semester will be the LAST! Since it “only” entails my 180-hour internship that I have to complete on my days off, I am done with grades! The internship is Pass/Fail, so my GPA is what it is now! I am not saying this will be an easy semester but it takes the pressure off when grades are not an issue anymore.
Tomorrow, Ralf and I will take a trip down to Miami and the Keys for a few days. After our return, we will tackle a whole different monster: We-Are-Moving! Stay tuned!
Reflection I am 12 months post-op, wow!!! Last year, same time, I was admitted to the SANA Dreifaltigkeits-Hospital in Cologne in hopes to reclaim my life. The feeling of finally boarding the airplane to fly overseas to have a German surgeon I have never met operate on my spine was simply indescribable: I would say it was a mix between anticipation, fear, and hope. Ralf and I arrived on a Saturday, the day before Easter and our 8-year anniversary, and I was admitted the following Tuesday. I met Dr. Desai that Tuesday for the first time, and I do remember that most of my worries melted away, and deep down, I knew I would be alright. And so it came to pass!
I decided to capture my reflection on video, and I hope that maybe it will help someone else, who faces a similar situation, to get through such a life-changing experience. I have also compiled some pictures from that time last year.
Ralf and I spent our 8-year anniversary (which also happened to be Easter Sunday) eating dinner at a Spanish restaurant in Cologne. He has suffered just as much through the last couple of years, so we both were ready to get this surgery done and over with!
This was my spine before: it still blows my mind how one degenerated disc (in my case L5/S1) can cause so much crippling pain and disability!
I remember everything! Dr. Desai actually stayed with me for 15 minutes in pre-op, talking to me until I was "put under" ...
Here I go, walker and all, for a stroll down to radiology to get my 1-day X-rays taken by Dr. Desai! At that time, ALL of the "old, crippling" pain had just vanished!
This was the first time I got to see my new spine, including my beautiful LP-ESP. Even though, the portion the covers the underside of L5 is a tad too long (2mm), the ESP covers my the entire endplate of S1. Fantastic outcome all around!
Here is an "up and personal" look of what's inside of me now (of course I got a new one, not the model, lol): the LP-ESP feels very stiff but that is great for protecting the facet joints while still providing motion in all six degrees, including shock absorption!
Here is my incision at two weeks right after Dr. Desai pulled my stitches versus today. Best scar ever!
And of course I had to wear my custom-made back brace. If it wasn't so stiff, it could have actually passed as a fashion accessory! So, after the six weeks were over, I had to find a purpose for that thing... Nailed it!
And here I am, at my last follow-up visit with Dr. Biren Desai, the person who gave me my life back! I might be biased but to me, he is not just an incredible surgeon but also a kind and humble human being. Thank you for everything, Dr. Desai!
Follow-up X-rays And here they are: my 1-year follow up X-rays (lateral, flexion, extension, anterior). Dr. Desai said they look perfect, no issues whatsoever!
1-Year Lateral view:
Here is a side-by-side lateral view comparison of my 1-DAY old X-ray (Left) and my 1-YEAR old X-ray (Right):
Flexion (Left) and Extension (Right):
Aaaand anterior:
Starting from scratch I know I said it a few times in the past, and believe me, it wasn’t for lack of motivation that I didn’t get to stick to regular workouts as planned, but things are starting to fall into place. Since I missed six weeks of workouts due to my overloaded, crazy schedule, Angela had me start from scratch, and this time, I WILL make it happen!!!
Food for thought: During the time that I was still on FMLA (when I was off during the first three months after surgery), I was very active, but as soon as work and school resumed, all bets were off! That is something that others in my line of work/type of schedule may face themselves, but even if you can’t make it three times per week to the gym, recovery from ADR can still go well…
Ralf and I also made to Seminole State Forest for a 2-hour bike ride through those beautiful (and often bumpy or sandy) wooded trails… (yes, it's the end of March here, those are the perks living in Florida)
This picture has actually a very personal meaning to me. Before my pain prevented me from doing anything physical anymore, Ralf and I did a lot of outdoors activities together - always together. That was taken away from us when I couldn't come anymore due to being disabled. But now, we can - together!
Emergency Management My plan is still in motion: I decided to use my MSN Nurse Educator degree to try to transition to the incredible National SimLEARN center in Orlando (still VA) to reduce my stress level and have a more structured schedule. But even if I leave the bedside to continue my nursing path in a different role, I still have my Disaster Response and Emergency Management teams to provide some "hands-on" emergency nursing. April 2nd was our pre-preparation meeting to go over detailed plans and check our gear for the upcoming annual Mass Casualty Incident (MCI) drill, an interdisciplinary mock mass casualty event that all emergency services within the city of Orlando will respond to!
Adding Structured Training After spending a wonderful time with my family over Christmas and New Year’s, I was hitting the ground running, starting the first week of January. One big benefit of writing this blog is that it makes me reflect on my progress (or lack thereof). I have to say that I haven’t felt all that great: I have been really sore between my shoulder blades and upper back (you could single out individual knots), my lower back has been fine but also tight, and my endurance level is pitiful. I do treasure the absence of the crippling pain every day though!!!
Here is a significant pattern that I am very much aware of: between my stressful job (and long hours), the demands of graduate school, and day-to-day errands, I just don’t find the time to do true workouts! Last summer, I was trying to commit to a structured workout routine every week, no matter what. I have to admit that this didn’t work out at all – I failed miserably! I realized that without guidance and structure, I won’t be able to do what I need to do in terms of exercise. So, I adjusted my strategy: my dear friend Angela Clough is the owner of the Crossfit Lake Nona gym, and she agreed to help me achieve my workout goals in a safe and effective way. Angela has recovered from a serious back injury herself, so she knows my fears (especially of lifting weights) and where I am coming from. She is creating tailored workouts for me, so that I can get strong and fit again without jeopardizing my new back.
Meet Angela, my photo-bombing trainer:
Over the last couple weeks, Angela assessed my abilities, strengths, and weaknesses in order to come up with a progressive workout plan. There were four “assessment days” during which my posterior chain, hamstrings, glutes, shoulders, and core were put to the test… But don’t let the word “assessment” fool you, I was soooore (in a good way, if you know what I mean) like I haven’t been in a long time!
First of all, I want to thank my physical therapist and trainer Bill for doing a fantastic job rehabbing me after surgery. Apparently, my back muscles are a lot stronger than expected, which was evident during the Sorenson test (see picture). I was able to hold the required position for 3 minutes and 10 seconds, which I was told was an excellent result! But now, I am ready to enter the next phase of fitness and wellness.
DAY 1 Starting out with some very basic movements and exercises to gauge my overall strengths and symmetry .
DAY 2
DAY 2 After Day 1, I couldn’t lift my arms over my head for a couple of days, even if my life depended on it during a bank robbery. I haven’t done pull-ups and push-ups like that in ages, and even though the pull-ups were banded, they kicked my butt, lol!
DAY 3 Day 3 was scary and exciting all at once. I know I need to re-introduce weight training into my routine to keep my bones and muscles strong. But I am not going to lie: I have been a tad leery about lifting weights but having such a competent coach has helped me gain the confidence I needed. To be perfectly clear, though, I have absolutely not ambition to become an Olympic Weightlifter or Powerlifter. But I need to be able to train with weights to protect my back and bones!
Here is the answer to the question that most likely crossed your mind at this point: how did/do I feel? AMAZING! Doing a deadlift correctly will tax your hamstrings and glutes but should never strain your back. At no time did I feel any pain or undesired discomfort during or after the move! After all: that’s why I chose the LP-ESP and its buffering properties. Before surgery, I couldn't even pick up my 13-pound senior-puppy!
P.S.: I also realized that I needed flat, non-cushioned shoes to secure a non-wobbly stance while lifting, so I got a pair of Nike Metcons (my first non-Hoka pair in a long time).
Before surgery, I couldn't even pick up my 13-pound senior-puppy!
DAY 4 At this point, I can already feel the effects of a structured workout program. I have more energy, my muscles between my shoulder blades and lower back are significantly less tight, and I feel overall a greater sense of wellness, if that makes any sense. However, Day 4 had a heavy focus on the hamstrings and glutes, so for the next couple days, I dreaded stairs and walked like a duck! But I am all recovered now and ready to begin my actual workouts this week!!!
Biking in Hal Scott Preserve I haven’t had the chance to ride my new mountain bike much at all, lately. I am also still in the process of finding the right saddle for my butt, but maybe if my glutes get stronger, my tolerance will, too. So, last Saturday we went on a leisurely ride (my legs were still tired from the Day 4 workout) at Hal Scott Preserve. There is an interesting network of trails, going from grassy-overgrown, to hard-packed dirt, to large-gravel trails, to peanut butter mud holes. It was a beautiful Florida day, just before the next cold-front was rolling in. I think I should get properly fitted at JC’s bike shop to get the saddle-issue resolved. After that, I will be unstoppable!!!
Busy Times Before the Holidays The good news: after 3 years of working the holidays, I finally got both weeks off this year. The bad news: I still had to work four 12-hour shifts in a row at the maddening-busy ER in order to string together my days-off to accommodate my mom’s arrival from Germany. I worked Friday, Saturday, Sunday, and Monday, “off” on Tuesday, then jury duty on Wednesday from 9AM to almost 5PM, followed by racing home, just to turn around and go to the airport, where their flight landed at 5:55PM. If I knew that my mom and step-dad were going to be stuck in immigration for another three hours, I wouldn’t have had to rush so much.
I certainly put my back and ESP disc up to a challenge, especially after working four brutal days in a row, which is always demanding on the body and mind. On that one day off on Tuesday, I started the day early to run errands across town, then I cleaned my 2-story town home top to bottom, which included deep cleaning two full and one half-bathrooms, vacuuming/mopping the floors, and converting Ralf’s office into a guest room. Just before my work-marathon, Ralf and I put together another cabinet, complete with six drawers. That was a couple notches up from the shoe cabinet that I recently assembled and involved lots of crawling on the floor, putting in screws at awkward angles, and putting the finished product in place.
Ooooh, and then there was the issue with that massive, electric recliner that cluttered up my living room. In the months leading up to my surgery, I basically lived in that thing due to the back pain. But now, I no longer needed it, and it really didn’t fit with the new couch anymore! Ralf and I had to wrestle that thing into the garage by sliding it down the stairs, step by step. Ralf did the heavy lifting, of course, but I am proud to say that I hung on to that sucker to prevent it from crushing my love on the way down. Rest in peace, recliner. You will be returned to the Wallaby Ranch, where I got it as a loaner from a good friend who was trying to help me be more comfortable.
Before Surgery
After Surgery
Airboat Ride Anyways, I did have a wonderful holiday season, which I got to spend with my family. However, those two weeks have been quite busy: I took my family on various outings, such as Disney Springs, Celebration, and Portofino Bay at Universal. In fact, I surprised my mom with a mother/daughter spa day at the Mandara Spa at Portofino, since she never had a massage at a spa – ever! Because she doesn’t speak English, I booked a “couples massage”, to be able to tell her what’s happening. This was also a nice massage for me, but boy, am I tight between my shoulder blades!
So, the day before New Year’s, we went on an airboat ride, which can be quite bumpy but are a “must” to get glimpse at the amazing nature and wildlife Florida has to offer. The outfitter was located in Christmas, Florida (yes, that’s the actual name of the town) and lasted for about an hour. Again, those airboats can be a tad bumpy, and there isn’t really anything to hang on to. However, the tour was amazing and my ESP buffered those little shocks like a champ. No pain during or after, which made me very happy! I suppose people who suffer from severe degenerative disc disease (DDD) can understand what big of a deal a simple outing like that can be, when your natural disc is toast and any harsh motion will send waves of pain down your spine. We had a blast, my family enjoyed this experience as much as I have, and I must say that things like this make me feel normal again.
Ponce Care As I mentioned in a previous update, my fur-baby’s diagnosis, which was finally confirmed with an echocardiogram, revealed severe heart failure with respiratory complications. So, his medications were significantly increased, and a second diuretic was added to keep the fluid in his lungs at bay. However, that also meant that we now have to carry him up and down the stairs, and that quite frequently, due to his need to pee more often. Especially at 1 AM in the morning, carrying him down/up two flights of steep stairs was a bit of a challenge, so Ralf and I took turns.
The reason why I am sharing this is the fact that I was unable to pick Ponce up prior to surgery at all! I actually dropped him once half-way up because my back gave out. Now, his 13 pounds doesn’t bother me anymore, and I can carry him without any issues or pain.
Even with his occasional wheezy cough, Ponce is still very happy and is enjoying a life full of snacks, treats, and belly-rubs. So, from my family to yours, we hope you also had an amazing holiday season with friends and family. Merry Christmas and Happy New Year!!! 2018 has been an intense but good year for me. Let's see what 2019 has to offer...
So, we have a furry son: Ponce. He is our most important member of the family, and even though he has been going through some health-issues for a while now, we have managed his health well with medication and certain lifestyle adjustments. However, while I was still at work, Ralf called me last night because Ponce was in respiratory distress, coughing, wheezing, and unable to lay down. He has been diagnosed with an enlarged heart that has been pressing on his little trachea at times, but overall, he is a happy (13-year-old) puppy! When I got home, Ponce’s breathing was shallow and he kept gagging and couldn’t lay down for most of the night. Our poor baby! Nobody got much sleep during the night, and to be honest, we were bracing ourselves for the worst. First thing in the morning, we scooped up our baby and rushed to our vet, where he was diagnosed with acute pleural effusion (water in his lungs). Maybe it was the cold-front that came through that triggered the event, but who knows? He got an injection of Lasix (diuretic) to get the fluid out, and so far, he appears to be better. Ponce has finally slept a few hours but has to go outside frequently to pee. He’s not out of the woods yet but we are hopeful! Ralf and I are a mess right now… at least I am off today!
Finally able to lay down, hope it will last...
Here is my boy during happier times…
Managing full-time work with school stress
Work-School-Sleep-Repeat: that has been my life over the last couple of weeks. I wish I could report more activities, such as biking and working out, but life has not let me get much of a break lately. In a way, this was a test of endurance and the ability to sit and focus on graduate schoolwork for long periods of time. I truly wish I could have worked out as planned but I just haven’t had any time to do so lately. In addition, I am experimenting with a new saddle for my bicycle that will agree with my seat bones better but so far, I haven’t found the right one yet. Work has been very stressful, especially with all the snowbirds coming down to Florida. I had some pretty intense days at work, which included having to restrain somebody while avoiding getting kicked in the head. Between tomorrow and Friday, I will hopefully be done with the last giant paper, and this will finally conclude this semester.
I feel the lack of structured rehab in terms of being “tight” allover. The muscles between the shoulder blades are in knots, and my lower back feels sore. HOWEVER, this soreness is also muscular and I have not had any pain creep up on me, for which I am grateful for! I mentioned in a previous post that I can still clearly remember the pain, how it felt like, and what kind of (even micro-) movements provoked it. I never had any of that pain come back. In a way, this was the test of my tolerance for sitting for extended times, coupled with tons of mental and physical stress. I’ll be honest: it sucks, but I got through it without major issues.
Cleaning is a workout, too!
With that being said, even today and tomorrow, I will add more challenging activities to my agenda: cleaning and moving stuff around. I also mentioned in a previous update that I was not able to clean my home anymore due to the pain and disability. Well, we decided to buy a new couch, shoe cabinets, and dressers from Ikea, which are going to be delivered tomorrow. That means moving things around, vacuuming, etc., in order to be ready for the delivery. Oh, we also decided to assemble everything ourselves, which should be interesting.
