I forgot about Valentine’s Day…I was so relieved we made it through the holidays and got so focused on port placements & infusions that I totally spaced how significant Valentine’s Day would be this year without Rudy. How did I not see it coming? Valentine’s Day was my favorite holiday to do with the kids when they were small because it was so much fun to prepare Valentines for friends and family together. Rudy’s enthusiasm added a whole other dimension to the fun.
When I opened the Valentine decoration bin this week, I was surprised to find the really cool Valentines Rudy and I bought on sale last year for him to give out this year! He was so excited when we found them. He would have been thrilled to share them with his classmates…dog gone.
Of course, I think the tradition we’ll miss most this year is the annual recording of “Will You Be My Valentine?”. How grateful we are for this crazy collection of videos. Looking at pictures and videos of Rudy was painful for me in the wake of his passing, but they’re now becoming a huge comfort. Rolf and I find it’s pretty easy to get lost (sometimes for hours) in the pictures and videos we have of him. And even though we have hundreds of images of him…I wish we had hundreds more. Once in a while a friend will send us a picture of Rudy we don’t have and it takes my breath away…such an unexpected gift. 🙂
Well, we may not have a new rendition of “Will You Be My Valentine?” to share or a fun report about a Valentine exchange at school but it is Valentine’s Day nonetheless and, therefore, an opportunity to tell you how much you are loved and how much we appreciate the love extended to us over and over again. We are rich in relationship and we don’t take that for granted! Happy Heart Day dear ones! We love you.
It’s February. We’ve turned another page in the calendar…I shared recently that I feel stuck between two epic life experiences, the loss of a child and a terminal diagnosis, which makes the passage of time complicated. The challenge to live in the moment and not get overwhelmed by the grief of the past or the anguish of the future continues to require a daily conscious effort. Embracing “today” continues to be the priority.
The past couple of weeks have been filled with a balance of time with good friends and family along with continued disease management. My permanent port was placed on Friday January 26th and my second round of Radicava infusions started today with the new port. The port has been more tender and cumbersome than I expected but it is healing nicely and, I suspect, will become second nature in time. I also started to take a low dose anti-depressant medication which seems to be helping to take the edge off a bit.
At the urging of my local neurologist, Rolf and I visited the multi-disciplinary ALS clinic at Cedars Sinai in Los Angeles on January 31st (I’m including Rolf’s detailed notes from the visit below for our records.) I can’t say I had a strong felt need to be assessed again and I wasn’t particularly motivated to make the trek down to Cedars but we did get some helpful information and I’ll probably go again in 6 months. The sobering reality that is reaffirmed with every consultation I go to is that no matter the state of the art facility or the resources at hand, all anyone can really offer me is confirmation that this is a “devastating” diagnosis and the promise to keep me comfortable down the line. Ugh. There’s a big part of me that wants to gracefully back off and just live my life out naturally without medical intervention but at the same time I have this Charlie Brown-esque hopefulness that maybe, next time, the football will stay put…that maybe our determination and commitment to the process will result in something tangible. I don’t know…I wish I could make sense of it all…I wish I had a strong feeling one way or the other and didn’t respond to each recommendation with “well, it couldn’t hurt”…I wish it wasn’t all so vague and subjective. Blah, Blah!!
Cedars-Sinai ALS Clinic visit summary
On Wednesday (1/31), we visited the Cedars-Sinai ALS Clinic.We were told ahead of time that we were only scheduled for a “consultation” and not the full clinic, as insurance will only approve the latter after a referral from an initial visit with a neurologist.Even so, Dr. DaSilva called ahead to see if a few other specialists would be able to stop by while we were there and we were very glad this was the case–made the drive worthwhile.We arrived at Cedars at 8:45, got checked in shortly after 9 and were quickly taken to an exam room–where we stayed until almost 1pm.There were a few breaks of 15 min or so, but for the most part it was a steady parade of doctors, therapists and a few of what I call “PUPs” (People of Unclear Purpose–hospitals are full of clipboard carrying mystery people that come in and ask you questions.)
We started with a pulmonary function test and then Dr. Elsayegh (Pulmonologist) came in for a consult.There was good news here as Dr. E explained that the lungs are a key determinant in ALS.As difficult as it is to lose functionality of extremities, etc., when the muscles that facilitate breathing get impaired, then major interventions have to be considered (breathing machines, traches, etc).The good news here is that Trish’s lungs function is exceptionally good.I forget the exact units, but typical lungs function at 80% and when things decrease to 60 it gets problematic.Trish was at 102 (probably thanks to all her singing), which means there’s considerable margin for her. While no one can predict how quickly the disease progresses in any individual, this could make for more of a time window.
After that, we got a very thorough exam from the neuro fellow before Dr. Lewis (Neuro) came in.Dr. Lewis was unhurried and spent quite a bit of time with us doing his own exam, answering questions, and explaining research studies.It’s reassuring to have the attention of a very intelligent and compassionate expert, but if only he didn’t have to employ his gift of communicating clearly and caringly about really difficult realities:it’s a devastating diagnosis, there are no cures, no clinical trial out there is anywhere close to landing on a cure.There are two research studies Cedars is conducting that Trish agreed to participate in as they only involved interviewing and a blood draw, so Dr. Lewis spent even longer with us conducting the study exam and interview.
After that came a speech therapist, dietician, ALS Association rep and probably a few more people I’m forgetting. The whole session was clearly being coordinated and there seemed to be good communication between the specialists, which was both efficient and caring.It’s impossible to tell the story of Trish’s diagnosis without bringing in Rudy’s death in July, so it was a comfort to not have to repeat the story too many times–most people came in aware and led off with compassion.
I can’t say we didn’t walk away a bit disappointed.We’ve learned from HLHS and ALS that, as much as you try to keep grounded and aware that a diagnosis is terminal, there’s still a part of you that goes into every appointment wishing you’d hear someone tell you there’s a cure.But it is what it is.What we can be thankful for is the assurance that we’ve got good care.The Cedars team would see us every three months if we’d like but since so much of what they said affirmed the care we are getting here in Santa Barbara, for now we will plan on seeing them every six months–unless a need arises before then.
I was going through some old CDs the other day and came across an original CD my friend Grace recorded over 15 years ago! She invited me to sing two of her songs on the project and I was struck by the timeliness of them for me now…kind of prophetic and a sweet encouragement from a young Trish and Grace…
Closer To His Heart:
Be Still My Soul:
Speaking of encouragement, here’s some more…
I’m being well taken care of on so many fronts and a great example of that is my good friend Rick who went above and beyond to make sure I have a secure cup holder on my walker and a custom-made ramp up to the worship platform at church! 🙂 Ha ha! I am blessed and I’m so very grateful for the ongoing show of support from so many…as we’ve been reminded multiple times this past month at all my appointments, this is going to be a long road and I’m so grateful the Geylings aren’t doing it alone!!
Today marks 6 months since Rudy passed away. Rudy might have been small in stature and limited in his physical and cognitive abilities but his presence was so big. He filled whatever space he was in and I’ve said many times in the last few months that losing Rudy was like losing a small dinner party. His absence cuts so deep and has changed the landscape of our space forever. To say I miss him isn’t sufficient but I just can’t capture the depth of my longing in words today…only in groans.
‘Love you deeply Rudy! Your joy and enthusiasm continue to inspire us… may you experience the love behind our longing today!
Rolf captures it well in the tribute he posted on social media this morning:
Six months of silence so deafening Of an ache deeper than words Only because we never knew smiles could be that big, laughter could be that full,
and any moment could contain such bottomless joy.
I love you, Rudy.
Our family went on a road trip last weekend. We drove up to Redding, CA with a small group of friends to visit Bethel Church and attend one of their weekly healing prayer services. This can lead to questions so if you’re interested in my thoughts on healing, here’s my attempt to explain…
One of the things I value most about my faith journey is the variety of church “homes” I’ve had in my lifetime. For example, I was born into the Reformed Church, accepted Christ and grew up in both American and Southern Baptist Churches; as a young adult, I worshipped at a Baptist church plant, a black gospel church, a home church in Tijuana, Mexico, a multi-ethnic inner city church and an Evangelical Free Church; Rolf and I attended a Vineyard Church when we were first married, Wilson and Max were baptized in a Presbyterian Church as a babies, Olivia was dedicated in a Foursquare Church and we currently go to a Nazarene Church. The Bible and my faith in Jesus have always been at the center of my spiritual experience but the traditions and liturgy have varied over the years and I love that.
I learned early on that no church or denomination is perfect so my approach to the churches I’ve attended was always to plant relational roots, participate in the traditions historically relevant to that denomination and, most importantly, glean what was life-giving & spiritually relevant. Scripture shapes my view of who God is and how He interacts with the world and being a part of so many different Christian traditions (at least in America) helped broaden my perspective of the church and how it interacts with the world.
Anyway, I share a little of my history because I think it helps to set the back drop for my thoughts on physical healing as it relates to church practice. Some of the churches I was a part of embraced the ministry of healing with a zeal and a passion that could blow the roof off a building. In others, the subject never came up…not in the pulpit or in practice. The subject of physical healing can get emotional and divisive real quick which often leads to confusion and discouragement. I think the heart of the problem is that it’s so easy for us to get hung up on the methods of physical healing and forget to focus on the One doing the healing. I FOR SURE don’t claim to be an expert or even a student of supernatural healing but I’ve been forced to face two non-curative, palliative care situations in recent years which leads me to examine my beliefs about healing and, therefore, is a significant part of the journey for me.
To be clear, I believe I am on a journey of healing. Although I’m asking God for the miracle of physical healing (as I did for Rudy too), I recognize it is just a temporary “fix” as I’m going to die someday and experience the ultimate healing of Heaven, equally miraculous, and there is great assurance & comfort in that for me.
But, as it relates to physical, emotional and mental healing this side of heaven, I believe God heals and because creativity is at the heart of who God is, He is creative in how healing is expressed. For example, in His infinite wisdom and power, He created the human body to heal itself, He has empowered human beings to assist in the healing process through the practice of medicine and He has the power to heal supernaturally. Based on the examples of healing in the Bible, it’s clear that one’s healing is NOT dependent on his or her faith but is the result of the bigger design and purposes of God…drawing people to Him and bringing Him glory. As much as I desire to have ALS lifted from me and my nervous system resurrected for personal reasons, I don’t want to lose sight of the fact that if God does choose to heal me supernaturally, it’s part of a much bigger design and if God chooses to call me home to Heaven, that, too, is part of a much bigger design.
As I mentioned in a previous post, I’ve been doing my due diligence (or “appraisal of assets”) in the medical and therapeutic resources available to me (i.e. I finished my first 14 day cycle of Radicava infusions today) and I view my spiritual pursuits like the trip to Bethel as part of my appraisal of assets on the spiritual side…the pilgrimage provided us as a family an opportunity to concentrate on healing and seek God together specifically for healing. I walked away from the weekend feeling ministered to, confirmed in what I believe about God and healing, motivated to continue to pray for healing and challenged by God (even in the days leading up to our road trip) to “prepare for healing”…(I’m not quite sure what that means yet and am eager to understand it more as I continue to explore it).
Simply and selfishly, I want to live and enjoy the fruits of my labor. Rolf and I worked hard at raising our family and we love being with our kids. I want the joy of watching Wilson, Max and Olivia find their individual paths and the privilege of encouraging them along the way. I want the joy of pouring into the lives of my grandkids and sharing the ups and downs of growing old with Rolf. I want to grieve Rudy without grieving me too. I don’t want to slowly lose my ability to interact with the world and the people I love OR slowly lose my ability to do the things I love…to sing and lead worship or play guitar and make jewelry. I don’t have any option for physical healing other than a supernatural healing and my response to that is to recognize my utter dependence on God, boldly ask for my heart’s desires and trust God to show up like He did for Moses in Exodus 33:18ff. God will have mercy on whom He will have mercy and He will have compassion on whom He will have compassion and so I pray Psalm 86:3-4: “have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in You.” Ah, JOY! That’s a true gift. This is a painful process, for sure, sometimes it’s sharp, drop to your knees kind of emotional pain but mostly it’s a constant deep ache that is impossible to shake. Have mercy, Lord. Bring healing. Bring Joy. Touch and relieve the deep places of heartache and continue to reveal yourself in fresh, creative, life-giving ways…in Jesus’ name.
Well, once again, what is going on in our household is taking a backseat to what is going on in our community. I don’t say this begrudgingly…but in disbelief and agony for the many friends affected by the latest natural disaster to hit the Santa Barbara area. The south coast hillside communities that were threatened by the Thomas fire last month (that ended up being the largest fire in CA history) were consumed with mud after a torrent of rain swept through Monday night. There was little to no warning for those caught in the mudslide’s path…homes were swept off their foundations completely, many other homes are still standing but filled with 8 feet of mud. Fifteen people are confirmed dead and 24 others are still missing. It’s a difficult situation for many in our community to process and we are truly heartbroken for the many we know in these neighborhoods. Please pray for the folks affected, the rescue and recovery efforts still underway and the amazing local agencies organizing everyone. It’s an overwhelming situation.
Our introduction to the infusion part of our journey occurred this past weekend before the rain devastation. I had my temporary IV midline inserted Friday in the early afternoon and my first Radicava infusion done at the hospital later that same day. Rolf and I went back to the Infusion Suite at the hospital Saturday, Sunday and Monday afternoons and have been doing the infusions ourselves at home since Tuesday. So far, so good. The weekend also included getting both boys back to school after their 3-week Christmas break at home and a pre-planned visit with Oma so it’s been especially full. My ankle is still quite sore but is definitely getting better. I so appreciate your prayers and encouraging messages…thank you! As has been the norm lately, ‘so grateful God’s fingerprints have been all over the surfaces of our family’s life in the midst of so many variables that add to the chaos of living right now.
So, I’m not sure what the next few days will hold for us. Oma’s visit had to be extended a bit because she can’t get to LAX for her flight home…the 101 Fwy is completely shut down due to the mudslide. An important meeting with my hospice case worker regarding future help in our home had to be postponed as well.
Rolf and I will continue the daily infusions at home through next Thursday. The following step will be for me to get a permanent port placed in my upper chest and then we’ll resume the infusions the first week of February. Very doable. In the meantime, I have a speech assessment and pulmonary function test coming up next week so with all the calendar items from this week being postponed until next week, it looks like we’re in for a jam-packed schedule coming up. That’s all we know for now. Thank you for all the inquiries and follow-up messages. The love and concern is such a sweet comfort.
Although my week so far has nothing to do with the 1960’s science fantasy novel about time travel, I do feel as though I’m having my own version of a wrinkle in time as circumstances are forcing me to move at a snail’s pace physically and at warp speed emotionally. I’m ending the week physically exhausted and emotionally manic…”wrinkled” feels like the perfect adjective.
It all started with a little tumble on Tuesday night that turned into a pretty debilitating injury. My weakened left leg caused me to fall while stepping up one little step into my bedroom and I ended up badly spraining my good ankle. It could have been worse, for sure, and I’m so grateful I didn’t break anything but the injury has severely impacted my mobility and I’m walking with the extra support of a walker. I expect to recover fully from the sprain and hope the use of the walker is only temporary but the reality of the situation is that this fall was a result of my disease and the process is only going to continue so I think it’s safe to say this won’t be my last fall and/or injury and that’s a tough pill to swallow. One crazy thing about ALS is because there is no pain associated with the disease, there are also very few markers with which to measure the weakness in my body beyond trial and error…there’s no barometer to indicate change. (I kind of feel like the frog in the pot of water unaware it’s beginning to boil.) The weakness in my extremities is really only measured when they fail me…usually with no warning and in a split second. This can be both terrifying and humbling.
Then, yesterday I got a couple of calls out of sequence in the late afternoon that are ultimately good, I think, but were initially confusing and abrupt and resulted in me being told my picc line is getting placed AND my first infusion of Radicava is happening TODAY!!! Yikes!!! This is definitely a lesson in perspective because on one hand, I could look at this sudden turn of events as a miracle and rejoice in the fact that I don’t have to wait any longer to begin this medication treatment. On the other hand, it’s a life-altering process that, once started, will continue for my lifetime and that feels daunting to me. It’s all so clinical and routine for those coordinating the treatment and care…it’s all so new and consuming for me. I need time to process, to adjust, to breathe and I’m not being given that space. I guess I need it to happen supernaturally…on God’s perspective of time because it isn’t happening in “real” time. I don’t mean to make it a bigger deal than it is but from an emotional standpoint, I feel like the “sudden turn” experiences of this week are pretty consistent with how life has unfolded for us in recent months…losing Rudy so abruptly without warning, my diagnosis so quickly afterwards, the progression of my symptoms, etc, etc…It’s all coming at us so quickly and the gut punches are feeling relentless today. I want a break. I want to be able to stop for a minute and not have something new to process or adjust to…I want to take long, deep breaths…I want time.
I’m also keenly aware of the fact that this is all happening at a time that is typically difficult for me anyway…the month of January has always been hard for me at varying degrees over the years due to post-holiday blues and, when Rudy was alive, the start of “out-of-pocket” maximums again (random, I know, but true). If ever there’d be a time I’d sink into depression over all that’s been going on, it would be now.
So, if you would be so kind to continue to pray, my requests for today include but are not limited to (insert smiley face):
A healthy, balanced, motivating perspective on life right now.
Quick recovery and renewed strength in my right ankle.
Protection against depression.
Supernatural ability to adjust to all the sudden changes gracefully with a light-heartedness.
Strength of spirit for all the Geylings.
All around good experience with Radicava.
Lots of reasons to smile.
If all goes as planned, my temporary PICC line will be inserted today at 1pm and my first hour-long infusion will take place at 4pm. I will receive Radicava everyday for 14 days. My first 3-4 infusions will happen at the hospital and if I tolerate it well, Rolf and I will be trained to do it at home sometime next week. After my first 14 days of treatment, I’ll get 2 weeks off. At some point I’ll get a permanent port placed and every month after that, I will get 10 infusions within a two week period (i.e. infusions M-F for two weeks) and two weeks off for the rest of my life. Radicava is thought to slow the progression of ALS symptoms (not reverse them) so the hope is this infusion treatment will help to stabilize my situation. The effectiveness of the drug, of course, is kind of vague because I won’t know what I’d be like if I weren’t on the drug. It’s not like I’ll have a shrinking tumor to demonstrate that the treatment is working so I think my approach going into this is to assume it IS working and not wonder if it is, if that makes any sense. A good bit of this will be a mind game.
I’m sure this will all become second nature to us and we’ll figure out how to incorporate it into our daily routine of life but today it feels big and invasive and like something that’s being done to me rather than something I’m choosing to do for my own good. The number of paradigm shifts that are necessary right now is growing and, I guess, it would be nice to feel (and look) a little less wrinkled. 😉
THANK YOU FOR YOUR PRAYER SUPPORT! You have no idea how comforting your prayers are to our family. Love, love, love to you and yours!
Happy New Year Friends! We returned home from a quick family getaway late yesterday so today is a day to unpack, settle in and prepare for the regular routine to begin again tomorrow. Olivia will head back to school after her 3+ week break due to the Thomas Fire, Rolf will head back to the office and I have a long list of appointments to tackle. The boys won’t return to their campuses until the weekend so we have a few more days to enjoy with them. Yay!
In an effort to switch things up a bit this holiday season, we planned a trip to Cabo San Lucas, Mexico for a few days after Christmas. We left at the crack of dawn on December 26th and enjoyed 4 full days of time together without the distractions of home. I think we did a good job of embracing the experience even though our minds were consumed with the continued swirl of thoughts impossible to shake. There were the obvious thoughts of Rudy and the progression of my disease but I also thought a lot about the holiday season as a whole and it’s distinct progression…starting with Thanksgiving as a time to lookback and reflect on things for which to be thankful, continuing with Christmas which, for me, is a time to look within and reflect on how Christ’s presence impacts my life and ending with New Years where the focus is often to look ahead with hope for good things to come. Of course, losing Rudy in 2017 made it painful to look back and particularly profound to look within this holiday season…and is making a look ahead to 2018 kinda empty.
There is a big part of me that wishes I could slam the door shut on 2017 and start fresh in 2018 with a clean canvas on which to create something completely brand new. The challenge, though, is I don’t feel like my canvas is clean…it’s muddled and cluttered with a full palette of dark colors that don’t seem very appealing or useful in creating anything new. I guess the challenge will be to incorporate the hardened, dark, textured strokes of 2017 into 2018’s story and trust that we’ll experience the beauty even if the beauty is hard to see at times.
Welcome 2018…’praying you hold more joy than heartache. ‘Praying we soak up all that is true, honorable, just, pure, lovely, admirable and good!! ‘Praying all of Phillipians 4:4-9 will define you! Welcome.