We were pulling our Roam Home from Lincoln NE to Kansas City MO, and it made the most sense to stop at the Capitol on our way. The only challenge was finding a place to park. There are metered parking spots in front of the Capitol, and no one was around, so we parked there. We couldn’t figure out how to pay for ten spots on the meter, but fortunately no tickets were left on our window. It turned out to be a great photo opp!
We arrived late enough to barely catch the final tour. No one else showed up, so we got another private tour! Our tour guide wasn’t feeling well, but she was happy to oblige. I am still amazed by the knowledge of these tour guides. You can ask them about practically any artifact or picture in the building and there will surely be a story to share.
The artwork in the main hall to the rotunda is incredible. The artist completed all of the pieces in a matter of months. Done in the pointillism style, the artist paints little dots close together which look like an image when viewed from a distance. It’s pretty amazing when you think about it.
This antique Otis elevator is still in excellent working condition. In 1995 it was seen in the movie Truman, after they looked all over to find one. (Not The Truman Show with Jim Carrey.) Truman is a biography of President Truman, who was Vice President when FDR died, and was suddenly promoted to the presidency. The movie stars Gary Sinise. We visited the Truman Presidential Library and Museum down the road earlier in the day, so now we want to watch the movie and look for the elevator as well.
Kansas State Senate. After the House did a renovation project the Senate decided they needed a bigger and more beautiful room as well. When they did their makeover they set a budget of $70,000, then doubled it. That’s white onyx from Africa and Mexico. The stained glass windows on the side were imported from France, said to represent the sun, but later noted to also look like the sunflowers.
There is evidence of the Kansas prairie all through the decor.
The State Library of Kansas moved to the Statehouse in September 1900. Annie LePorte Diggs, First Woman State Librarian (1898 to 1902), reported to the Governor.
The State Library of Kansas was also presented as part of the tour. We walked up a tiny staircase and across a block glass floor through rows of books as our guide explained fun facts about the library. My fear of heights kicked in for a moment, but I was okay to continue. They installed lots of contraptions to make the librarians’ work easier. The librarians used the book elevator to transport books up and down.
Ad Astra is the name of the statue on top of the dome. He’s a Kansa warrior, the tribe from which Kansas got its name. This honors the Native American heritage as well as the motto of Kansas, “to the stars through difficulty.” Another Interesting story about that. There was a plan to put Ceres, goddess of agriculture, on the top but there was controversy over honoring a pagan goddess so the dome sat without a statue for decades. Ad Astra was finally installed in 2002. There is a cast of Ceres in the museum at the bottom of the Capitol.
À la prochaine…hasta la próxima vez…until next time!
This is the first state to radically depart from the design of the U.S. Capitol and build a 400-foot tower. Built out of Indiana limestone, it is the second-tallest state capitol (only because Louisiana’s governor insisted theirs be taller).
They paid for the building as it was going up. Nebraska was not permitted to go into debt for the building of the Capitol, so much of the artwork had to be added later. The building cost just under $10 million when it was built in 1922-1932. If it were destroyed and needed to be rebuilt as it stands, it would cost into the billions.
The influences of Spain, France, and USA are noted in the artwork, representing some of the nations that made Nebraska great.
When we entered this state capitol, it felt a little weird at first. Like a catacomb. There was no grand entrance or visitor’s desk to greet us. We couldn’t see the dome, which we thought was strange as well. We didn’t realize we had entered through a back door.
We finally found the main entrance. It felt a bit overwhelming at first, as there are many mosaics on the ground and paintings in the main hallways; a tour guide noticed our confusion and asked if she could show us around. She had just finished with a group tour and had some time (I think she was feeling a little bored), so she gave us our own personal tour!
The Nebraska Capitol is one of the most unique buildings we have seen to date. We are still trying to decide whether we like the architectural decisions, which combines Egyptian style with Nebraskan landscape and history.
Fun Fact. Nebraska is the only unicameral state, meaning they don’t have a separate House and Senate. They haven’t always been that way. The bicameral, two-group system was based on British Parliament (House of Commons and House of Lords), which Senator George Norris believed should no longer apply to us. He believed the two-group allowed for too much blame, whereas one body would have to take full responsibility for decisions made. He proposed a new form of government, and Nebraska voted to move to a unicameral, one legislative chamber, in 1937. They meet in the old House of Representatives chamber pictured here. Notice the gold leaf painted on walnut wood, representing Spain (lions), France (flour de lis), and U.S. history (eagles).
I also found it interesting that a couple of young students created a ten-minute documentary on the history of Nebraska unicameral system, which is featured in their state website.
Brief video looking down on the floor of the rotunda. The tour guide explained this to us, but I can’t recall the detail. Wikipedia comes in handy at times. The Capitol has a number of these spectacular mosaics on the floor of the halls and rotunda.
“The Procession of Life continues in the Rotunda’s floor…At the Rotunda’s center, four tondi mosaics representing the Genius of Water, the Genius of Fire, the Genius of Air, and the Genius of Earth surround a larger tondo mosaic of Earth as the Life-giver.” (Wikipedia)
Surrounding each Genius are the animals found in Nebraska during archeological digs, or known to have lived in the water, air, earth, or died by fire.
Earth, as the life-giver (Mother Nature)Genius of Fire. Zoom in to see the tiny tiles in the mosaic.
Supreme Court. The very large tapestries on the Supreme Court walls are over 100 years old. Unfortunately they are faded by the Nebraska sun.
8,000 pieces of wood are used in the ceiling of this room, designed for acoustical purposes. Seven seats of justice are in front of a hidden door, where they enter and leave to their secret chambers.
Our tour guide walked us to the antique elevator, which took us up 14 floors to the four observation decks with views of the city. She stamped or passport and encouraged us to browse on our own from there.
The dome on top is octagonal shaped, and has large murals dedicated to various service personnel.
According to Wikipedia, “The capitol and its grounds are a frequent site of political demonstrations, rallies, and news conferences.” We walked by this group and it appeared they were rallying around feeding the hungry. View from the observation deck..
Our tour couldn’t be complete without a nod to The Lincoln Monument, built in 1912. This predates the current statehouse. The commission for the State Capitol stated, “Solutions should consider this monument and suggest for it a proper part in the ensemble, preferably but not imperatively on the building site proper.” Architects had to incorporate the Monument into their design proposals to be accepted.
The Lincoln Memorial in Washington D.C. was built a few years later (1914-1922).
It is also interesting to note, in 1976 the National Park Service designated the capitol a National Historic Landmark, and in 1997, the Park Service extended the designation to include the capitol grounds. We should have gotten a stamp in our NPS passport (darn).
À la prochaine…hasta la próxima vez…until next time!
We toured two State Capitols so close together, I was going to combine them into one blog. We have done so much these past weeks; it’s getting hard to keep it all straight! But then it was getting too long, so you’ll see my Nebraska blog soon.
September 16, 2024 – Cheyenne Wyoming.
This capitol building recently went through a four-year restoration and renovation project, and was closed during that period of time. It reopened to the public in July 2019.
The tour desk lady stamped our passport and gave us some information to get us started, but they only offer a self-guided tour from thereon. There is a video, which we didn’t take time to watch; it probably would have helped us to uncover some of the finer details. They also have a cell phone tour, where you can click on the QR Code at each location to learn more. We were a bit pressed for time, so we walked the floors, talked to a few staffers, looked at the architecture, took some pictures, and read some of the plaques. We did find a few interesting facts that peaked our curiosity, and you will find those in this blog.
This room has two titles on the double entry doors. There was some debate over saving this room, but there is a lot of history here.
Beautiful furniture and fresh flowers on all floors.
The domes in the buildings that have one always catch my eye. In this case there are four bronze statues on the four corners of the third floor worthy of attention. They were added during the restoration project, but were made to look like they have been here since the beginning.
Hope. Sound on to hear Tim reading the description of Hope. On the third floor of the Wyoming State Capitol.Courage. Sound on to hear Tim read the description of Courage. On the third floor of the Wyoming State Capitol.Justice. Sound on to hear Tim read the description of Justice. On the third floor of the Wyoming State Capitol. Truth. Sound on to hear Tim read the description of Truth. On the third floor of the Wyoming State Capitol.
What state holds the title for “first female governor in the United States”? Wyoming, of course. In the governor’s office behind the receptionist is a large portrait of Nellie Tayloe Ross, who was governor from 1925-1927, and remains the only female governor of Wyoming. She was also the first female to be appointed as the Director of the United States Mint. There is a statue of Her Honor in front of the historic governor’s mansion as well.
I’m so grateful I have enough energy to do the things we do. God has given me the gift of more time. Time to live. Time to minister. Time to worship Him, and see His great creation. Time to see some inspiring things made by man. I know not everyone who has cancer is so lucky, but I will continue to live life to the fullest as long as I have enough energy and breath left in my lungs.
À la prochaine…hasta la próxima vez…until next time!
Life on the road is quite unpredictable. One has to be flexible. Travel can be full of ups and downs. Currently, we have several ongoing issues with our Airstream. Mostly small, but a couple are potentially bigger ticket items. We have scheduled an appointment with the Mothership in Jackson Center, Ohio. It will be late October when we get the warranty work done. I wrote about that in another blog.
This blog is about my most recent medical issue. For a few days I had been noticing symptoms. I developed a UTI (IYKYK), and while AZO was providing temporary symptom relief, it had been long enough that I knew I needed an antibiotic. It was a challenge to travel all day, stopping at every rest area along the way only to experience the thrill of “I have to go NOW” to … “oh, maybe I didn’t have to go after all” to … “oops.”
As you know we are far from home. My primary care doctor can’t send a prescription across state lines, so I needed to find a walk-in clinic. Because we were just passing through when Tim had an important Zoom meeting, he had providentially booked us into a hotel in Sidney Nebraska. He needed to ensure his Internet would be working, and he didn’t want to be stressed out with Roamy.
We got to Sidney fairly early in the day, just before lunch in fact. We had traveled a bit further the day before to make this a shorter day. The timing and location could not have been more perfectly aligned. As it turned out, there was a walk-in clinic just a mile or two from the hotel. The staff were wonderful! Very warm and supportive. I had no paperwork to complete (imagine that!), as they are on the EPIC online medical system. MD Anderson also uses EPIC. The Nurse Practitioner who saw me had my medical history in front of her as we talked. That really helped speed up the process, and I felt like they knew what they were doing.
Only one person was in front of me in line. They got me in, out, and I had in my hand a prescription from Walmart–also a mile away–all within less than an hour. I do believe this was a God-thing, because my prayer partners were in their closets petitioning Him to rescue me from this ailment. Within 24-hours I felt much relief, and was definitely on the road to recovery. They sent me a survey via text after the visit, and I gave them very high marks. I would definitely recommend this clinic if anyone is passing through Sidney Nebraska and needs medical attention.
I wasn’t going to let a UTI stop me from my plans.
After Tim’s meeting, I surprised him with a (very small but albeit memorable) birthday party and card shower in the hotel lobby. This is his BIG 60, so I wanted to do something special. I had been secretly asking for birthday cards from our Facebook friends. We have been traveling so much it was hard to connect to everyone we know, but Facebook is a pretty good sweep. I picked them up at the mailbox the last time I went home for treatment, and had the rest mailed to the hotel.
The cards were so clever, hilarious, heartwarming, reminiscent, and just plain fun. I have never seen any of these great cards in all the times I have looked for his birthday cards (I also gave him a card every day this month leading up to his birthday, which I have been buying in various places over the past year). We laughed and continue to laugh as we think back on each card from our family and friends.
In addition to all the cards, he also got a t-shirt from me with an RV and tow vehicle that says, “I’m sexy and I tow it,” as well as a Louis L’Amour book that he can add to his very large collection.
It’s good to be on the mend, and seeing life returning to “normal” as we know it on the road.
À la prochaine…hasta la próxima vez…until next time!
The title could have read, “The Grand Tetons kicked our butts,” or “We experienced peak disappointment in the Grand Tetons.” Read on for this Tale in the Tetons.
Mid-September our calendar read, “Grand Tetons National Park, Colter Bay Campground,” and this is the one stop we were both very much looking forward to. It’s our first visit to the Grand Tetons, so we booked two nights in the Colter Bay Campground, on Jackson Lake. We are collecting stamps in our National Park Journal along with several passport books. Collecting stamps takes us places we might not ordinarily think to go.
Lake Jenny Scenic Loop, Grand Teton National Park
We will get into the challenges in a minute. But first, let’s review a few fun facts about the Grand Tetons.
The Grand Teton Mountain is in a 40-mile mountain range that can be seen in its entirety from one overlook (and there are many). Each overlook provides a unique view, with a different mountain exposed more prominently than the others. We drove the scenic loop, went to the visitor center, stopped at several overlooks, saw the Snake River crawling beside the mountain range, and walked to Jackson Lake from our campsite where a beautiful view of the mountains unfolded in front of the colorful sunset. Grand Teton is the tallest of the mountains at 13,775 feet above sea level. It is more rugged and jagged than the others, although the entire mountain range is quite beautiful. Snow still stands at the top of these mountains.
The Grand Tetons is the only national park with its own airport. We saw several planes landing right beside the road where we traveled to the park. Also, one website said the Grand Tetons are the youngest mountain range in the Rocky Mountain Range, and quite possibly among the youngest in the world.
After spending one day in the Grand Tetons, we decided to take a trip to Yellowstone National Park. We had been to Yellowstone once before, but it was a very long time ago. Bryan was a young boy and our daughter was still inside my womb. She just turned 27!
Yellowstone National Park has changed a great deal since our last visit. Now it includes hotels and general stores and gas stations at nearly every village. Also, we were able to go into areas that were closed before; we were there Memorial Weekend in 1997 surrounded by snow banks. We saw Old Faithful and other geysers erupt, took in some lake and mountain views, saw the Canyon Falls and Grand Canyon of Yellowstone, had lunch by the roar of the Yellowstone River, drove the full scenic loop, and saw some bison herds. It was a very good day.
Bison herd, Yellowstone National Park
Quite a lot of animals live in the two National Parks. Pronghorn reside there, and in case you didn’t know, they are the fastest mammal on land in the western hemisphere. They can run up to 70 miles per hour. Lots of birds were also of interest. We saw some ground squirrels and chipmunks, but most of the big animals besides the bison eluded us. We missed seeing the bears and bighorn sheep, but we felt satisfied with our animal sightings. The most popular animal was the two-legged kind, riding in their steel cages and on their two-wheeled motorbikes. Needless to say, traffic was horrible and patience was tried.
But that wasn’t the worse of our tale.
Our Airstream Globetrotter (lovingly known as “Roam Home” or “Roamy” for short), has been our full-time home for the past 160+ days. We have been running her pretty hard. She has been faithful to us with minor repairs as can be expected with any house on wheels: a few loose screws, missing rivets, etc. But this time we experienced something new. In the Grand Tetons we had to boondock, also known as dry camping, meaning they have no electric, water, or sewer hook-ups. Normally we can go 4 or 5 days without needing any hook-up, so we didn’t think two nights would be a problem.
However, for some reason the batteries could not keep up. It got very cold at night, down into the 30’s, and we had to turn on the furnace. The furnace runs on propane, but it does require electricity to kick on. That was fine the first night, and we were toasty warm. But the batteries completely drained by the second night, and that meant no heat.
Airstream boon docking in the Grand Tetons Colter Bay Campground
Our spot was surrounded by trees, so our solar panels were only in full sun for a few short hours during the day. We weren’t home most of the time, as we were site-seeing and driving scenic loops in both of the National Parks, so we weren’t using any battery energy. The only thing pulling electric was our 12v refrigerator. However, it seemed the battery life was going down pretty quickly in spite of this. By the second night we had to turn off the entire system (which meant no fridge, and no heat). We bundled up and layered up, slept under two blankets, and made it through the night.
The next day we drove to Cheyenne Wyoming. It’s a long drive, and typically the batteries will charge while they are connected to the tow vehicle. Plus it was a sunny day, and the solar panels had full sun the entire way (well, except for the big storm we drove through at the end of the day). Halfway there, during our lunch stop, Tim checked the battery level and it seemed to be charging. But when we got to Cheyenne the batteries were dead, or at least very low so that they would not permit the power to stay on in the Airstream. After plugging in to shore power, the batteries were fine. From them on, we’ve had no trouble with the batteries staying charged.
We tried to diagnose the problem We checked the battery level manually with a multimeter, called our mechanic friend, called Battle Born (the lithium battery manufacturer), called Airstream, and ultimately decided we need to get the batteries load tested.
Our plans now include a side trip to Ohio, where we will stay at the Mothership campground, and get the batteries tested, and the rear axle replaced. In case you didn’t hear, our rear left tire was wearing faster than the others, and Dexter Axles is giving us a free new axle “as a courtesy,” with “no implied warranty attached.” We’ll also have them do some other minor warranty work while we are there.
We managed to salvage some of the food in the fridge, while the freezer stuff had to be tossed. We defrosted the refrigerator at the next stop, gave it a good cleaning, and started filling it back up. I was happy our grilled chicken was still good, as well as the salad. That was dinner the first night in Nebraska.
À la prochaine…hasta la próxima vez…until next time!
To recap, I went to this eye appointment because Dr. Boeckman (my regular Optometrist in Conroe) and Dr. McGovern (my Neurosurgeon at MD Anderson) both referred me. They thought it would be a good idea because I have double vision, which has gotten progressively worse over the past several years. I wear glasses with prism to counterbalance the double vision. (I also have progressive lenses to help with reading, but that’s not abnormal for a gal my age 🤣😂🤪.)
As it turns out, my eyes are fine! My brain, however, is another issue 🥴🤪. It’s my brain, or rather the result of previous brain lesions and the residual effects of the gamma knife radiation treatment, that are causing my symptoms.
I guess I thought once they eliminated the brain lesions things would go back to “normal.” As I’m still learning, every treatment or phase of this disease puts me into a “new normal.” Brain metastasis is no different. The lesions followed by gamma knife radiation treatment have affected multiple areas of my body. I didn’t know there could be this many correlations, but it turns out there are. I’ll go through each of them and talk about what I learned, and what we can do about it, if anything.
The night before my appointment, I flew in from Idaho Falls, Idaho, where my Homey and our Roamy are. (We have recently started calling our Roam Home “Roamy.” ❤️)
Enterprise gave me a great deal on a rental car. I did the “mystery” car option, which saved me money, and the worker said to take my pick of any SUV in Aisle 3. I chose the Jeep Grand Cherokee. It was clean, smelled nice, and was fun to drive. It rained the whole time I was in the Houston area, so I was happy to have a more substantial vehicle.
My plane got in after dark, and I drove about 30 minutes to my hotel from the airport. I have to admit, Downtown Houston is really pretty at night!
I spent the night in a hotel near MD Anderson so I could walk or take the shuttle. Plus, I would not have to pay for parking at the hospital or deal with the morning downtown traffic. Have I told you how much I detest driving in downtown Houston traffic 😂🤪? I took the shuttle over (it was raining), but I walked back the hotel rather than waiting (there was a break in the rain).
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I was on time to my appointment. They said to plan on a three hour visit, which I did. My entire appointment took about 4.5 hours. 🙄 😳
First the tech did a bunch of eye tests to look at vision, peripheral, colorblindness, pressure and more. Similar to the annual eye doctor checks, only more in depth and slightly different tests. They also took vitals (they ALWAYS take vitals). Mine are good. 👍
Next the OD (optometrist) and PA came in to see me. He gave me his card, but I don’t have his name in front of me. He was very thorough, and didn’t seem rushed at all. They both checked my eyes, did a bunch of tests on the double vision and prism, and talked to me about why they think this is occurring. He found some slight worsening in my double vision since I saw Dr. Boeckman and got my new glasses in April. I get a new script and new glasses every year.
He was the first to tell me I had a TBI (Traumatic Brain Injury) from breast cancer lesions and gamma knife radiation treatment. This is causing my double vision, because the lesions occurred in the cerebellum which controls balance and vision. Incidentally, I had severe dizziness in 2018, which prompted the first brain MRI when we found the lesions. I continue to have mild dizzy spells, but nothing like when I had the brain mets.
The Optometrist gave me a helpful tip for dealing with vision and balance issues. Always look with your nose. E.g. point your nose at what you want to look at, and it will help your eyes to come together better. This may help with walking, especially in precarious places like hiking near a cliff or going up a staircase.
Dr. Al-Zibidi, Neuro-ophthalmologist, was last to see me. She had reviewed my history, and then she performed her own exam. She looked at my eyes, then dilated my eyes, then examined them again. She was very thorough. She’s an Associate Professor with MD Anderson, and a very good educator. She said my eyes look good!
She further expanded on what the optometrist had said. She explained how our vision works with the brain, how mine has been impacted by the brain Mets and gamma knife radiation effects.
She described how the vestibular system works, and explained some medical terms like occipital vestibular and gravity vestibular. Basically, if I understand it correctly (I’m not that kind of doctor 🥴), the vestibular system involves the connections between eyes and inner ears, and extremities and the ears, and sends messages to our brain. All of these connections are translated by the brain, in the cerebellum. That’s where I had the three brain lesions in 2018 that were treatment with gamma knife radiation in January of 2019, so my brain doesn’t always “interpret” the messages correctly that are sent by my vestibular system.
All this to say, having a history of brain lesions and radiation can cause many things that are going on with me, even years after the radiation treatment. These symptoms may sound daunting when we look at them all together, but I have been managing them well. Most are mild enough we don’t have to worry at this point. We will continue to watch in case things get suddenly worse.
I have double vision, abnormal gait, posture instability, and problems with depth perception. This results in dizziness at times as well as occasional headaches.
When I take a step, sometimes my brain does not interpret the step correctly. It “misaligns,” and tells my body the step is further away or closer than it is. For example in the airport I was having trouble walking in a straight line. People were trying to pass and they couldn’t figure out which side to pass on 😂😂. I blamed it on my suitcase which has a mind of its own. It does 🙄, but I probably could not pass a sobriety test if I got pulled over and the officer directed me to walk the line.
My steps tend to be heavier, as my body is trying to feel the gravitational pull (gravity vestibular). It’s the same concept with people who have neuropathy (which I also have). My mom had diabetic neuropathy and I could see it in her gait. Mine is from treatment. We “trudge,” because our body is putting the full foot down so the brain can interpret the level of gravity which connects to the foot. Vestibular issues can make one feel like you are “floating,” because of the miscommunication between the brain and gravity. (That’s fun 🤪 🙄). I can only explain it like I’m wearing big heavy boots for walking on the moon; I “stomp” to stay grounded. It’s not intentional, but my body walks that way. Sometimes I can intentionally walk differently, but it makes me feel uneasy. Mine is not nearly as bad as some people have it, and for that I am grateful. However, if you ever pay attention to how I walk you will probably witness the moon walk.
I tilt my head to compensate for the vertical double vision (I didn’t really know I did that, but the doctor saw me doing it). I feel a bit dizzy at times, like the room is spinning, especially when I first get up. It goes away quickly. I just have to sit a moment and move slowly. Head tilting can also cause issues with the spinal column alignment, and produces hard knots in my neck. Tim is constantly massaging my shoulders, but the tightness in my neck never really goes away. (Ooh, maybe I can get a doctor’s note to get regular massages covered by my insurance! Just thought of that. 🤩🤩)
Sometimes my brain does not interpret depth perception properly, which makes going up and down steps a bit more challenging than it used to be. I am much more cautious getting in an out of a vehicle, walking around curbs, going up/down steps, and I have actually felt paralyzed at times when a step “seems” too hard for my body to manage. This happened to me when we were hiking in Colorado, and again at the Devil’s Canyon Overlook.
If it’s a set of steps made out of rocks on a hiking path, where the steps change shapes or size from one to the next, I have to stop and let my brain figure out how to take the next step. Otherwise I feel like I will fall. My fear of heights starts kicking in and I start to panic. I have to take deep breaths and let my eyes focus on the task at hand.
I haven’t actually fallen yet, and hopefully I can continue to prevent that. I often rely on Tim and sometimes I use a walking pole to feel confident with each step when hiking in unfamiliar surroundings. Tim lends a shoulder whenever we are going up/down a regular set of stairs like in the Capitol buildings.
Even swallowing takes a bit more effort than it used to, which is apparently also connected to vestibular issues. I get hiccups more than I’ve ever had in the past (mainly while I’m eating). I had no idea all these things could be related 🤷♀️🤷♀️.
These symptoms in combination sound quite daunting, and I suppose they could be if I choose to let it be, or if my circumstance got worse. But it doesn’t currently interfere with life. It’s more of what I think of as an inconvenience. It may stop me for a momentary pause, and people may look at me sideways 😁😆, but I just keep going. I don’t let it get me down. I don’t let it prevent me from living life and challenging my body a bit.
Honestly, it’s good to finally have some answers on the “why” questions to all these little physical annoyances. All of this because of a traumatic brain injury. Who knew?
And maybe a little extra because I’m getting old. 😂 😂 🤪 🤪
The doctor said we can work on the gait and posture with PT/OT, but I’m not a fall risk so I don’t really need (or want) to do that right now. They can’t do much for the double vision except continue to put prism in the glasses. Horizontal double vision is easier because there’s a wider field to work with. But mine is vertical (left eye is higher than the right). They can only put so much prism before it becomes distorted, making everything worse (we are getting close to that point). If it gets too bad, I could wear a patch over one eye and just look through the other. Arrr 🏴☠️
Tim asked if I could get a pirate outfit to go with the patch 🤦♀️ 😂 🤪.
There are other options for future treatment, if things continue to get really bad. They can give me steroids, or if it gets really, really bad, they could do surgery. But, my vision would have to be stable for six months to get surgery, which is not likely to happen.
IF my eyes did stabilize for at least six months, surgery on the occipital nerves or muscles (not sure which) would have to be done by the pediatric surgeons at Texas Children Hospital. Yes, you read that right. Apparently pediatric surgeons are the only ones who do this type of surgery since it’s mostly kids who have this problem. I could get into that!
Tim said he always knew I was still a kid at heart 😂 🤪.
I don’t anticipate needing surgery any time soon. And neither do the doctors. They are just telling me things to look out for. Now they have my issues on record so I can be followed as needed.
The worse case scenario, if one wants to think about worse case scenarios, is if those post-radiation spots developed necrosis or edema or we had progression with more lesions. I think that would be really, really, really bad, but we don’t anticipate that happening either. Continued prayers 🙏🏻 in that vein are appreciated 🫶!
Dr. Al-Zibidi said if this problem was going to correct itself, they would have expected it to do so within 4-6 months post radiation. So that’s not likely to happen. It’s been 5 almost 6 years since I had mine, so the chance of spontaneous correction will be left up to God. We can still pray for a miracle! 🙏🏻🙏🏻
In the meantime, we will keep treating the symptoms (double vision, gait, head tilt, balance) unless there is a sudden and significant change, at which point we would start looking at other options. Dr. Al-Zibidi said she would like to see me back in 6-12 months to check their numbers and see if anything has changed, but she’s quite content for my regular optometrist to follow me, and doesn’t anticipate needing to see her on a regular basis. She complimented Dr. Boeckman, and said he is doing a good job. She’s pleased with his work (he also faxed over all my records so MD Anderson could review the history). That’s encouraging. I like going to him, and I have seen him for nearly 15 years now.
After my appointment I walked back to the hotel, picked up my car, and drove to Conroe where I stayed the night in a different hotel. A much better hotel, for less money, actually. It was raining, and my eyes were still dilated, so that was a fun drive 🥴🫤🙃. I picked up the mail, went by our storage shed, visited with my son and his family, and finished the trip with my infusion the next day before flying back to Idaho Falls.
Whew. That’s a lengthy blog. Sorry about that. But, I learned a lot, and hopefully you did too. Now I know what to look out for, and I know better how to pray. I also feel like I have answers that explain some of the things I’ve been experiencing, so it will help me to have a better handle on what my body. I feel confident that my body is just responding to history, rather than “new” cancer issues creeping up, and I believe what they shared with me to be true. This referral by my optometrist and my neurosurgeon was a good idea. I’m in good hands.
À la prochaine…hasta la próxima vez…until next time!
