Although the crushing weight of life is pretty constant right now, it isn’t all doom and gloom around here. We’ve had some sweet “full of life” moments sprinkled throughout the heaviness of the past couple of weeks.
Special celebrations and sweet tributes have filled November so far and the month is only 1/2 over. We’re counting down the days until Wilson and Max come home for Thanksgiving. ‘Can hardly wait!
I have come to the conclusion that the “Boogie Man” is real because in the past 3 1/2 months, we’ve confronted one nightmare after another that are still so difficult to believe…i.e, the potential scenario that made the hairs on the back of my neck stand up in caring for Rudy over the years is what unfolded on the morning of July 25th. When I googled my symptoms for the first time and ALS popped up as a possible match, I physically shivered at the thought but, of course, dismissed it as a crazy internet diagnosis. “I can’t possibly have ALS!!”. Well, today was my 2nd opinion appointment at UCLA and the ALS diagnosis was confirmed.
To be honest, I’m ending the day less devastated by the confirmation of the disease and more disheartened by our day as a whole. I knew my expectations were too high going into today and tried hard to readjust those expectations in the days leading up to today’s appointment but I really wasn’t prepared for how today played out. I have two responses…the practical and emotional.
Practically speaking, Rolf and I walked away from today with our second opinion and a clear feeling that UCLA doesn’t have much more to offer us than what is available to us locally and that is super helpful information AND important to remember.
Emotionally, however, I’m left feeling defeated and duped. We had the expectation that today would include a clinic visit with assessments from the clinic MD, physical therapist, respiratory therapist, nutritionist, etc. We were instructed to have Dr. C’s medical notes faxed to the clinic for the MD to review. We were told the authorization needed to have the clinic director’s information specifically so there wouldn’t be a delay in getting the appt scheduled or restrictions in care…a request that required a couple more phone calls to the insurance company. Bottom line, we worked hard the past 6 weeks addressing the checklist of “to dos” that ended up not having ANY impact on today at all. Our appointment lasted less than an hour. Although I have no problem with the doctor we did see, it wasn’t the clinic director which makes me question why we had to go to the trouble of getting a second authorization with her name on it. The medical notes faxed from Dr. C’s office, could not be located and, therefore, were not reviewed by the clinic MD. Confirmation of the diagnosis was determined by my answers to a questionnaire and a quick reflex & physical strength examination. I don’t doubt that is all the information the doctor needed to make his determination but I feel like we wasted our time coordinating the transfer of records that weren’t used. I thought we’d have more detailed information and the beginnings of a game plan as a result of today. Instead, I feel like we’re ending the day exactly where we started it and I can’t tell you how deeply disappointing that is for me.
To add insult to an already bruised spirit, I fell as I left the clinic. (Ironic as we had just had a discussion with the doctor about the big threat and potential negative impact of me falling!) It was an epic fall with bags flying and nothing to break the fall. Rolf had already left to get the car and there I was on all fours with tears streaming down my face in the middle of a large hallway unable to get up. Luckily, a maintenance employee heard the commotion, came out of a break room to inspect and hoisted me to my feet. Needless to say, I’m pretty sore tonight and less confident on my feet in general. 😦
Before we left campus, Rolf and I made our way to the main hospital to donate a box full of toys to Child Life in Rudy’s memory. It was difficult to be there without the boy so embedded in our UCLA memories. It felt like a foreign place…the familiarity of UCLA that we felt would be our comfort in this next medical journey just wasn’t there anymore…making it all feel even more isolating and unknown & our boy further away.
So, what’s next? I’m really not sure. There are no specific follow up appts planned at UCLA for now. We’re in the middle of open enrollment trying to figure out the best insurance plan configuration to meet our current needs. Dr. C and the doctor we talked to today didn’t have any knowledge of or information on the stem cell clinical trial at UCIrvine so we are left to figure it out on our own. And we will, all of it, one day at a time but not until next week because the MOHD squad has a SBRM graduation and Nashville wedding to go to this weekend!!!
I wish I could say some profound spiritual truth anchored me today in the midst of my frustration and disappointment but what did come to mind was the Veggie Tales theme song from the “God is Bigger than the Boogie Man” video my big kids watched a thousand times when they were little!
God is bigger than the Boogie Man, He’s bigger than Godzilla or the monsters on t.v. Oh, God is bigger than the Boogie Man and He’s watching out for you and me.
Silly, I know, but it’s true. God is bigger than our present circumstances and today’s lack of helpful information and options means there’s lots of room for God to work in His limitless power, mercy and love. Thank you, dear ones, for the abundance of texts, emails, and prayers upon prayers throughout today!!! Each one a reminder that we aren’t alone in this. God is bigger and our circle is wider than we could ever imagine and we are deeply blessed by the love. Thank you!
Rudy’s headstone was placed this week…another detail adding to our mixed bag of emotions. The final detail in laying our boy to rest is done. We’re pleased with how it turned out and hope it inspires some fun for those who visit him. A fitting tribute for our boy for sure…
Halloween is just a few days away. The official start of the holiday season – my favorite time of year (Remember? “Happy Hallowthanksmas”!!). It’s going to be a difficult season and I’m trying to brace myself. If Rudy’s absence could feel any more acute, it’ll be in the next couple of months. This month has already felt empty without the thought and planning we typically put into Halloween and Rudy’s costume…especially in recent years. I’m missing the fun and creativity Rudy inspired this time of year. I am missing Rudy.
I don’t want to sit around and be depressed all season and if all we were trying to manage is the loss of Rudy, I’m pretty confident I’d be motivated to redirect on some levels and give back in creative ways in Rudy’s memory but we’re trying to manage so much more and my heart isn’t in any of it…yet. I’m praying for holiday inspiration and joy.
Speaking of management, I had an appointment with my local neurologist on Wednesday (also the 3 month mensiversary of Rudy’s passing). Like us, he is surprised by the long delay for my 2nd opinion and feels we shouldn’t wait any longer to begin disease management. He is referring me to a pulmonologist for tests to gather baseline lung function data which will be helpful in the future. He is also prescribing another drug (Radicava) that will take some time to get approved by insurance and wants to get the process started now. It’s a drug that is administered intravenously (daily for two weeks, off two weeks, etc). Of course, if the diagnosis changes as a result of the 2nd opinion, we’ll cancel the plans in motion and redirect but I don’t think we’re going to see a change in my diagnosis…my symptoms are getting worse. Rolf and I are beginning to explore local support resources specific to ALS and I’ve applied for a clinical stem cell study at UCIrvine (a long shot worth exploring). Wednesday was hard. I’m working on seizing today and not becoming overwhelmed by the heartbreak that blankets our holiday season this year or the heartbreak that seems to be blanketing everything right now. I guess we’re bracing ourselves for more than just the holidays.
My appointment with UCLA is set for November 9th. Had there been a cancellation allowing me to go sooner, it would have happened yesterday so November 9th it is! Cedars got back to us with an appointment date on November 8th. Since the timing of both appointments is essentially the same, we’ve decided not to go Cedars and just stick with UCLA. It definitely feels like we’ve spent the past 5 weeks spinning our wheels but I’m still trusting in the timing of it all and eager to see where the next couple of weeks will lead. Thank you for your continued prayers dear friends!
We received the authorization paperwork we’ve been waiting for in the mail yesterday. PTL! It’s a relief to finally have it but it does feel a little anti-climatic…particularly, I think, because UCLA still can’t see us until November 9th.
Unfortunately, the momentum we initially felt with Cedars Sinai has faded too. They needed to review my MRI images and medical notes before they’d set an appointment… we’re waiting to hear back from them. Rolf and I would still like to go to Cedars as the more input we can get at this point, the better but it doesn’t look like we’ll be heading to the hills anytime soon. It’s disappointing.
So, we sit and wait. We’re good at that. It’s unfortunate this step in the journey has taken so long and it’s unfortunate Rolf and I are left feeling wiped out by the process but we’re positioned, now, to move forward. On a practical level, I guess our prayers are shifting from the acquisition of the authorization to a smooth 2nd opinion process, quick answers and OPTIONS! It would really be nice to have some options. 🙂
A big part of establishing a framework on which to manage the many moving parts of this new health journey for me is to approach it holistically from a physical, mental AND spiritual perspective. As we wait for the medical consults to come into play, we’ve started to address the other areas as well…mental health through grief/hospice counseling and, for me, spiritual health through spiritual direction.
I met with a friend this week who is also a spiritual director…a person trained to come alongside, listen & ask questions to help guide a client in his or her reflection and spiritual growth. I mentioned before that I feel God is calling me to focus on “heart and family” during this time of waiting for the 2nd opinion and exploring the spiritual elements of the journey I’m on is foundational to that. Because it feels like my whole being has been consumed with physical battles the past few weeks, it feels really good to spend time listening to God in a structured way with a friend.
At one point in the session, my friend asked me if I felt forgotten…I thought for a minute and told her I can honestly say “no” because even in the midst of all the layers of heartbreak, I can see God’s fingerprints. She asked for an example and I shared this story…
When Rudy became unresponsive the morning he died and we raced him to the local hospital in Guymon, OK, I remember looking up at one point and saying out loud “Oh my god, we’re in the middle of nowhere. What can they do for Rudy here?”. Looking back on it, I feel bad for judging the small town because the ER team there did a great job and I recognized that even in the midst of the chaos but God chose to take it a step further…fast forward a couple of hours…after Rudy was declared dead, the hospital staff left the room and gave our family some time together alone with Rudy. After awhile, the staff began to filter back in to offer their condolences and finalize official business. At some point, we had a conversation with the ER doctor that went something like this:
ER Doc – “So, you folks are from Santa Barbara?”
Trish – “Yeah, well a small town just north of Santa Barbara.”
ER Doc – “Goleta?”
Trish – “YES! How do you know Goleta?”
ER Doc – “I live in Santa Barbara”
Trish – “Wait. You do? Where?”
ER Doc – “Up in the hills by the Santa Barbara Bowl.”
Trish – “But if you live in Santa Barbara, what are you doing in Guymon, OK?”
ER Doc – “I fly out once a month for a week-long shift here in the ER.”
Trish – “You mean to tell me that we just happened to pull through town during the one week this month that a doctor from Santa Barbara is on duty here in Guymon, OK?
As we drove away from the hospital that morning, I was not only at peace with the care Rudy received but I was doubly at peace knowing that Rudy was in the care of an ER doctor that could have just as easily been serving us at Cottage Hospital had we been home when this happened! One of many fingerprints that day.
I had no problem identifying the many evidences of God’s presence as it relates to Rudy and our grief over losing him but it was harder for me to identify God’s fingerprints in my situation…that is, until I got into my car.
Here’s a little back story…Rolf, Olivia and I made a quick trip up to the Bay Area last weekend and I enjoyed catching up with a good friend who shared her enthusiasm for some spiritual formation study she is doing and how impactful a book about Julian of Norwich was to her. Julian of Norwich was a British Christian philosopher and theologian who lived in the 13th and 14th centuries, was known to have suffered great pain and loss but whose primary message remained one of hope and trust in God. My friend thought maybe I would be comforted by her story…fast forward to my spiritual direction session 3 days later…at the end of the session, my friend facilitating the hour asked if I would be interested in using Anglican Prayer Beads (much like a rosary) to help me focus in prayer (as I confess this has been difficult for me to do with all the thoughts swirling around in my head). I told her I’d love to try it, took the packet of beads and I went on my way. When I got home, I opened the little pamphlet that came with the prayer beads and read the recommended prayers and to my surprise, one of the four prayers was titled “Prayer of Julian of Norwich”!!! There she was again intersecting my journey again…within just a couple of days! You can bet I stopped and took a closer look at Julian of Norwich! 🙂 Another reminder that God is present, He knows my heart, He knows my needs and He is guiding.
Julian of Norwich is best known for “Revelations of Divine Love” which she wrote in response to an encounter she had with Jesus on what was thought to be her deathbed but from which she recovered. My friend was right. I am encouraged by what little I know of her story so far and many of her questions for Jesus mirror my questions for Jesus. I am particularly challenged by this quote: “It is God’s will that we accept His promises and His comfortings as broadly and powerfully as we can receive them and He also wills that we accept our waiting and our distress as lightly as we can take them and pay no attention to them. For the more lightly we take them and the less value we place on them for the sake of love the less pain shall we have in experiencing them and the more favor and regard will we have because of them.” -Julian of Norwich Hmmmmmm…
The beautiful thing about taking small steps to draw closer to God is that God meets us in those moments, takes the reins so to speak, and begins to pull us in because, I believe, He is just as eager for us to draw nearer to Him as we are eager to experience His nearness…He loves us that much and more.
And really important for me to remember today…He loves me that much and more.
I really miss posting pictures of Rudy…he provided us with endless photo opportunities. I’m not taking as many pictures these days but here are some fun glimpses into recent goings on in the life of the Geyling family.
It has been a month since my initial ALS diagnosis. We have no approved authorization in hand. The ALS clinic at UCLA can’t see me until November 9th (that is, if we get the correct authorization by then). The ALS clinic at Cedars Sinai has been very receptive to our calls and is willing to work with us asap. We’ve decided to pay out of pocket and pursue getting the help we need ourselves at Cedars Sinai. 😦
I’m tempted to unleash all my rage and frustration in this post over the futility of our efforts the past 4 weeks…wasted energy, wasted brain cells, wasted tears…but I’ll show some self control and simply say, please pray for breakthrough. Ultimately, we still need the elusive authorization to get me into my network of providers for the long haul (Cedars Sinai is not in our insurance network), I’m still desperate for direction on what I should be doing and, I know it sounds dramatic, but it feels like my hour glass is emptying and time. is. awastin’!
I appreciate the advice people have forwarded my way and know that I’m filing it all to sift through once my diagnosis is confirmed but I haven’t acted on anything yet. Right now, the internet information out there is overwhelming and confusing to me because I have no framework on which to hang the many, seemingly unrelated variables. It’s kind of like being given a huge bag of puzzle pieces without the picture. I could spend hours studying each piece and, in time, start to make some connections between them but I don’t have the mental energy to do that. I’m waiting for an outline of the bigger picture at least (i.e. 2nd opinion and consult) before I can start to make sense of the particulars. There is much to manage, for sure, and I’m taking it all very seriously but the mountain of information out there is starting to feel insurmountable and that’s a dangerous place for me right now. Your love and prayers are our comfort indeed! 🙂
On a completely different note, we got the multi-thousand dollar physician bill for the day Rudy died in the mail today. I’ve been wondering why we hadn’t gotten any bills for that day and assumed the agencies in Guymon, OK were just waiting for the insurance payout before billing us our portion. Instead, the bill in total came today. Which means? You guessed it, another string of calls to the billing office and insurance companies involved tomorrow. Not a huge financial stress as it will get sorted out. in time. after multiple calls. But the emotional pain is deep as I read the itemized bill…”Patient Name: Clinton R. Geyling”, “Date of service: July 25, 2017”, “Description of Services/Procedures: Emergency Evaluation & Management Services, Cardiopulmonary Resuscitation (CPR), Cardioversion, External, Elective” All just letters filling in a form to the people generating the statements but it represents a moment in time that completely transformed my life…the life of my family. I miss our boy tonight…a lot. ‘Kinda looking forward to a day when my eyes don’t sting. ‘Kinda feeling like a hot mess.
Please don’t read any of this as criticism or a bitch session…I really mean it to be a quick glimpse into the life of us right now…for the purpose of prayer to inspire fresh vision for what has become a stale process! I’m desperate for all things FRESH (and maybe an insurance employee who is super motivated, an independent thinker, a keen observer AND who is empowered to seal the deal on this authorization). I thirst tonight for tangible expressions of God’s power in my life…and eyes to see those expressions! I’m definitely feeling like the lame man whose friends went to the extreme effort of hoisting him through a roof to get him to Jesus who was surrounded by a great crowd of people and otherwise unreachable (Mark 2:1-12). I need to be brought to the feet of Jesus by the faith of my friends! Thank you friends for stretching your faith on our family’s behalf!! I have some more thoughts on that subject but I’ll save them for another day. 😉
I’m getting asked this question a lot these days. I don’t mind being asked but it has a complicated answer. So, how am I doing? Here’s the multi-layered answer…
As it relates to my 2nd opinion authorization, I’m discouraged and frustrated. It has gone far beyond bureaucratic BS and has become a truly twisted mess. I’m not sure how the process got so out of hand but there are now 3 different entities and multiple personnel working on it. As a result, there is still no approved authorization in hand or date on the calendar. I’m having a hard time connecting with UCLA as well. Unfortunately, the process is only serving to feed my fear and build up some pretty unrealistic expectations for what the 2nd opinion can offer us. I feel like I’m in a “no win” situation, literally, at every turn and my optimism is dwindling.
Physically? My body is fatigued but I’m not in any pain. The weakness in my left leg is causing me to limp. I navigate our home okay but feel self-conscience when I’m out and about. My speech is changing…I’m not sure how noticeable it is, but I’m noticing the change in my ability to form words and project. When I’m emotional, I can hardly articulate words at all. It’s very strange to be thinking the words I want to say but unable to say them correctly. I also have subtle twitches, just underneath the skin, all over my body all the time which is a constant reminder that my body is in a process. Right now the symptoms I’m experiencing are more annoying than debilitating but they certainly are adding to my fatigue and anxiety.
Emotionally? I’m struggling. Home is both the most physically comfortable and the most emotionally difficult place for me to be. I’m grieving and my home is a constant reminder of what I’ve lost and what I’m potentially losing. My mind just can’t process it. Right now the closest I can come to describing where I’m at emotionally is profoundly disappointed. Apathy is beginning to blanket my attitude toward everything. To be totally honest, there isn’t much I “want” to do. When organizing my day, I find myself choosing between the things I don’t want to do the least. My grief over losing Rudy is still so raw and “healing” in the grief process seems impossible because I have very little vision for my future. It’s like trying to treat a festering emotional wound with a salt shaker. I’m just really, really sad…all the time…with no relief.
Spiritually? Hopeful. I know this sounds contradictory to what I shared above but there is hope because God is near and I know that our current situation is just as much a spiritual journey as it is a physical one. One of my all time favorite quotes is from Betsie ten Boom – sister to Corrie ten Boom – who said (my paraphrase) there is no pit so deep that God is not deeper still. I know I can’t compare my experience to the brutality of Nazi Germany but life is brutal for our family right now and I feel like the pit is going to get deeper before life becomes less brutal. It’s the simple truths of God to which I’m clinging right now and they are putting a spotlight on my hope that is ever present whether I feel it or not.
Thank you, dear army of friends, for your prayers. Please continue! Love to you all.