Our next big trip starts in two days, Memorial Day, so we have been busy getting all of our medical appointments out of the way, haircuts and color, purchases that are too hard to get on the road, etc. In this blog I’ll share some updates from my medical journey. And a little bit of Tim’s as well.
Dec. 23, 2024. Scan for Bone Density, known as DXA BONE MINERAL DENSITY BOTH HIPS AND SPINE. I continue to show scores in the “osteopenia” range. It does appear that my bone density is (significantly) better than previous bone scans. The bone specialist continues to do bloodwork to determine the level of Zometa I need. This is an infusion about every three months, and just adds about 15-20 minutes to my normal infusion routine. Based on recent scan and bloodwork, continue with treatment.
April 23rd. MRI of the brain. AND fasting bloodwork (CTX Beta Crosslaps). Since my vision has been changing (increased double vision mostly), my neurology oncologist has been watching my brain again. They scan it about every three months. They always find some little something, but it’s all good. If you’re into the medical lingo, here’s a snippet from my test result. No changes. No new lesions. The spots they follow are residual effects from the radiation in 2019.
1. No new or recurrent intracranial metastases. 2. Stable scattered intrinsically T1 hyperintense lesions in the calvarium may represent hemangiomas and can be followed. Scattered intrinsically T1 hyperintense lesions in the calvarium show no worrisome interval change and appear to suppress on fat saturation techniques which may reflect osseous hemangiomas.
As for the bloodwork, she looks for certain numbers to determine when we need to get my next dose of Zometa. She did another fasting CTX in May, and the numbers went up, so it’s time for another dose.
May 1. CBC (full panel bloodwork) and Hip X-Ray. I saw the doctor on this date. I’m having some hip pain, ever since I drove my daughter to her surgeon’s appointment (4.5 hours away). She ordered a full blood panel in addition to tests for my hip. The blood showed some abnormalities including low hemoglobin, low red blood cells, and low platelets. This probably explains some of my fatigue lately. However, I was sick with a stomach bug from April 28-29, so this was likely the reason for the low blood counts (and fatigue). The X-Ray was normal, with this snippet. “Focal trabecular thickening of the intertrochanteric right femur. These features were present on the radiographs of 10/27/2022 and are considered benign. No evidence of metastatic disease.” That’s good news. They did find “Osteitis pubis” which is basically an inflammation which causes pain. Rest is the treatment for that.
The doctor noted this in my chart, “No fracture or evidence of cancer on the x-ray from yesterday. We’ll wait for the results from your CT and bone scan and go from there.” She scheduled my whole body bone scan and CT of the chest, abdomen and pelvis. It has been eleven months since my last body scans, and since we are traveling soon it’s probably good to get those done anyway.
May 8. Whole body scans. Also known on MyChart as CT CHEST ABDOMEN PELVIS W CONTRAST and NM BONE SCAN WHOLE BODY. This is a half-day long process, as they have to access my port, insert the nuclear medicine contrast for the bone scan (then wait two hours to do the scan). In the meantime I have to drink the CT contrast, wait about an hour and they do the CT. There’s about an hour in between scans where I typically go and eat something, since the CT is a fasting exam. If I have enough time I go off-campus, but usually there’s no time for that. I brought my breakfast this time and ate in the Marketplace on the 2nd floor.
Results: CT states “No evidence of active metastatic disease.” Also known as NEAD. They always find a few nodules in my lungs or other places, but they are stable and of “unknown origin,” so as long as we continue with the current treatment plan, there shouldn’t be any progression. Bone scan states, “Stable bone metastases involving the left fourth rib and the right iliac bone.” Mind you, the reports are much lengthier, but seeing the words “stable” and “NEAD” are what we hope for.
May 15, 2025. MOHS (Tim). Tim had surgery on his nose to remove basal cell carcinoma, and on this day he had the stitches removed. It was right by his eye, so a bit scary. However, the surgeon did an excellent job! She didn’t have any trouble closing it up, and she was able to get clean margins. You can’t even tell it was there. This is an ongoing issue for Tim as he has fair skin, thanks to his Irish blood. I believe this is his third surgery. Many of you have had this done as well. The older we get, the more we regret not wearing sunscreen as a kid.
May 15, 2025. Dental Crowns. I had two crowns put in the right molars (top and bottom) due to cracks in the teeth. I have to be very careful about what I allow dentists to do, as the Zometa can cause necrosis in the bones if they do any deep work. This dentist was well aware of my situation, and the crowns were not only the best option but they fit perfectly! I am very happy with those results.
Whew! Quite a month. Or two. We are now primed and ready for our next big adventure! More on that in the near future.
À la prochaine…hasta la próxima vez…until next time!
We had planned to leave for Florida today. Our plans were to spend a week in Panama City Beach at St. Andrews State Park, and then travel on to Melbourne where we would stay a month at Land Yacht Harbor (an Airstream only park). But the closer today approached, the more our uncertainty as to what to do expanded.
A few events lead to our decision.
Weather. We checked the weather. Daily. Hourly. Sometimes even more often. As you are probably aware by now, the weather forecasted a major snowstorm for the entire southeast. Unless you live under a rock, you have probably read about this or seen it on the news. It’s making national and international news.
I went to FaceBook and asked, “stay and play in the snow, or leave early?” Of course, my Florida friends said, “you have to ask???” Our Airstream friends were mixed, and extremely helpful in terms of making sure our Alde heating system was working. Some of our northern friends had already come south, but at least one of my friends experienced snow in the deep south after they left clearer skies up north.
Houston doesn’t get snow. In fact, KHOU-11 (our Houston news) said in a recent blog post, “Snow is so rare in Houston that we cannot even discuss the top ten recorded snowfall events in Houston’s history, because only eight of them exist.” Well, now there will be nine.
The NPR is talking about it. Winter storm “Enzo” is wreaking havoc all along the I-10 Corridor. Pictures and videos are flooding the internet of Beaumont, downtown New Orleans, Galveston Beach, and the panhandle of Florida. It’s a HUGE blizzard of “epic proportions.” (Now I sound like a weatherman.) I even saw a video of a cowboy in Texas riding his horse through the snow, pulling someone on a makeshift sled behind him. Classic.
Medical concerns. In the meantime, Tim received some disturbing news from his dermatologist. He has a few skin concerns, and the medicine would come in the mail for some of them. More importantly, he needs to schedule surgery on a spot very close to his eye (right on the corner by his nose). She’s about 95-99% certain it is basal cell carcinoma. He is waiting for the MOHS center to call back with an appointment, and whether we can afford the cost.
Work concerns. In addition to his regular work obligations, Tim is now scheduled for a presentation trip to Minnesota the first week of February (2-4). It’s easier to fly out of Houston than all the places we had planned to visit in Florida.
I also have some work to catch up on. I’m still supervising some LMFT Associates in Texas, and I need to complete some CEUs for my AAMFT supervisory status as well as licensure. I can do this better with the solid internet we have here as well.
Sometimes, it’s less hassle to go with what you know.
All that being said, we decided to “hunker down” and stay where we are. We were able to cancel our reservation at the State Park for a small fee, and delay our reservation at Land Yacht Harbor by a week (no fee). Both of these were paid in full, and LYH has no refunds, so we were glad to make these changes. We did try to reschedule St. Andrews, but it’s really hard to get in Florida State Parks this time of year. There are only one or two days available here and there (across the state).
We did end up getting between an inch or two of snow. The pictures are pretty. It stuck to the ground, but not the concrete. I was hoping for a total blanket. You know the kind that turns the trees to a solid white? The kind you see in all the other pictures from up north? However, this was pretty exceptional for our neck of the woods.
When stuck inside, it’s a good time to bake bread. There’s a little heat coming up from behind the sink, so my einkorn starter rose really well.
If you look closely, you can see the icicles hanging from the front of our Classy Girls, looking like fangs. She kept us nice and toasty warm inside! It warmed up to the 40s later in the day and most of the snow melted.
As it turned out, Panama City Beach Florida ended up getting more snow than we got in Willis Texas. Go figure! Looks like we made a good decision.
À la prochaine…hasta la próxima vez…until next time!
Foot pain. Not to be confused with plantar fasciitis, I was just diagnosed with plantar fibromatosis, or what I call “foot pain.” I’ve had some left foot pain for a while now, in the arch. It’s one of those things I kept putting off, thinking it would heal itself. When it started keeping me up at night, it was time to get some help.
With plantar fasciitis, which is what I thought this was going to be, foot massages can help loosen it up and make it feel better. Unfortunately, the opposite is true with plantar fibromatosis (although that is debatable). All those times I’ve talked Tim into a foot massage have more likely been hurting more than helping. He was happy to hear he could forego any future foot massages 😂🤣.
Since we are in our “home” area in Texas for a while, still living in our Airstream, I scheduled a visit with my regular foot specialist out in the Lake Conroe area. That’s what the sign by TX-105 outside his building says, “Foot Specialist.” His office is as modest as the sign, as is the strip mall where he is located. It’s always clean and his staff are very professional and pleasant. Every time I see Dr. Ehret for a foot problem, I learn something new. And I come away feeling glad that I went in to see him.
This particular foot specialist has been at this profession for quite a while (since the early 90s), and he doesn’t hesitate to diagnose. He immediately saw what I was dealing with, gave me a diagnosis, talked about how it likely got started (it’s usually more than one thing), and offered me some options for treatment. In addition, he talked to me about the neuropathy, explaining how the muscle, tissue, cartilage, and nerves all interact.
Plantar fibromatosis, per Dr. Ehret, is scar tissue related to some injury to the connective tissue in the foot. Maybe I stomped on the shovel too hard when we were putting down sod in our yard, getting it ready for sale. Or, perhaps I stepped on a rock the wrong way or landed on a ladder with poor soles, or hit the curb on my arch. It could be a multitude of injuries. Once it is injured, the connective tissue keeps building up scar tissue with constant re-injury, resulting in a “ball” of scar tissue beneath the service. As previously stated, he did indicate there are typically multiple causes, and not one singular reason this condition develops.
He said I could look it up online, which I did, but “don’t pay attention to the pictures,” he said, because they always show off the worst-case scenarios. I was interested in what Dr. Google would say, and I was mainly there for the text anyway. Wikipedia calls it an inherited disease, also known as Ledderhose’s Disease, named after the surgeon who first described it. The disease can remain dormant for many years, or even generations, but then show up in the form of benign nodules unexpectedly. Once it shows up, it will likely recur throughout life. I wonder if any of my family members have had issues with this? This article from the National Library of Medicine was also helpful.
Fortunately, mine is in a “good spot.” It’s right in the middle of my arch, which we don’t use as much to walk on. The two primary options in my case are inflammatory medicine, or surgery. Most doctors, Dr. Ehret included, like to take the more conservative approach first. So, we agreed with the inflammatory approach.
We aren’t talking about Ibuprofen. He marked my foot, had his assistant hold my foot and big toe with a strong, death-grip, and then gave me a shot of numbing medicine followed by the injection. When I said “OW, OW, OW!” toward the end of the shot he indicated, “Got it!” with a smile. He had to hit the exact spot, apparently, which he knew he had found when it hurt. But it also felt better. In the words of John Mellencamp, “It hurt so good.”
If the problem persists, especially to the point where I have trouble walking, we can do the surgery option. I hope a shot every year or two will suffice. Also, he handed me a hand-written note in his “best doctor script” which reminded me to walk in shoes and slippers with memory foam, not bare feet, stay off my toes, and baby the arches. The cute black boots I wore into the office, which I got at Walmart for $16.00, have memory foam soles; he was very surprised to see that. They don’t typically see shoes with good soles walking into their office. I’m proud to say my boots are officially podiatrist-approved 😊.
I walked out of there (yes, I can still walk) with some new knowledge and a whole lot of relief. God is so good. We prayed for foot relief right before I went in there, and He answered that prayer almost immediately. He has connected me with the exact right physicians at the exact time I needed them. And of course, He is the Greatest Physician of all.
One final thought. As I was contemplating Jesus as the Great Physician, I did a little Bible Study. He never calls himself that. He became known as the Great Physician because of all the miraculous healings he performed. But the reason he healed people was not just so they could see, hear, touch or dance again. It was to draw them (and others) to Him. He came to “seek and save the lost” (Luke 19:10). That was his mission. If you are in need of healing, perhaps he is waiting until the opportunity for that healing to draw you closer to him. To save you. To become Lord in your life.
À la prochaine à bientot…hasta la próxima vez…until next time!
Today I was at MD Anderson, getting a brain MRI and seeing my oncologist. He was reminded that I came to him when he first “came back” to MDA. (He left to go into private practice for a few years, then came back after he “did that.” He told me he plans to retire from here. He is now a full professor.) I was one of his first patients. He remembers well the size of the tumor that was growing in my rib cage (7 cm). And the others in my bones, skull, liver, and lungs. And the brain metastases. All gone*.
He uses my story to inspire those who are newly diagnosed with metastatic breast cancer. And other cancers. We can survive and thrive, and live a full life. Treatment can extend our life expectancy.
We love traveling as it is a testimony to the Lord. Even the Big Red Number (BRN) on our rig comes from Psalm 96:3…Declare His Glory**. I don’t know why God has kept me here but He must not be finished with me yet.
Not all of us are so fortunate. I never make light of cancer because it’s a horrible disease. Many of my friends and family have passed away from various cancers. Dr. Kovitz is very attentive and never brushes me off. He reminds me we can’t become so complacent with my progress that we forget. It’s a sneaky son of a gun, and we have to stay alert with scans and treatment. I am living with HER2+ metastatic breast cancer…
À la prochaine…hasta la próxima vez…until next time!
*My scans usually find “hot spots,” but my team has determined those are residual effects from the radiation, or scars where the cancer was at one time. We keep watching to make sure they don’t grow, or “progress.”
**Airstreamers acquire a number when we join the International Club. Wally Byam started this tradition when he began doing caravans and rallies, for protection and safety. The numbers can be seen on the front or back of rigs as they drive down the highway. Imagine if you were at a rally, had an emergency, called 911 and said, “we’re in the shiny silver Airstream,” and you are one of several thousand. The numbers help keep track of people, and quickly identify where they are located in a sea of silver.
Our BRN is 19963, and it was chosen for a purpose. Psalms is the 19th book of the Bible, chapter 96, verse 3. This has been our theme verse for many years. We keep ours on a solar powered display and hang it from our rock guard.
I had treatment on September 30th, in addition to bloodwork for genetic testing. Since these were the only appointments I had, I flew in and out the same day to save money on hotel and car rental. It was dark in Kansas City when I drove to the airport in the early morning hour, and it was dark when I got back from Houston. Tim flew in a few hours before me, and he picked up the truck from the parking spot. He was also exhausted from all of his recent trips, and when my flight was delayed he ended up getting a hotel in Kansas City, where I shuttled from the airport. It sure was good to be back together again!
View of Houston from the plane.
It was a long day, but I accomplished a lot while I was there. MD Anderson, mail, storage, and check on the house development were priorities on my list.
Genetic testing was completed about ten years ago, and everything came back negative at that time. However, they only checked a few things, and recently some of my family members have gotten positive results on some genetic mutations, so my genetic counselor decided to do it again. I’m still waiting on those results.
Chemo went quickly. My nurse got me in and out in record time. I was so glad because I still had several errands I wanted to run. We had a few packages to pick up, and I was excited about getting those because I ordered some fun stuff for the upcoming Airstream Rally.
I always check the mail and visit the storage unit when I’m in town. Whatever fits in my carry-on roller bag can get transported back and forth as needed. Since the weather has been changing, we have switched out our blankets, clothes, and a few other things to accommodate the cooler temperatures. To save baggage, I decided to put my wallet and consolidate my purse items into my computer bag. Of course I forgot to include my keys to the shed and mailbox! At first I panicked, but then I looked at the time.
Fortunately our mailbox is in a facility where staff can get my mail, and they were still open. I was not able to go to the shed. We have the only keys, and I can visualize them in my purse, which was still in Kansas City. My son and his wife graciously agreed to keep a box of our stuff at their place until the next time I come home. I was glad I had a little extra time to work all that out. I hope I don’t make that mistake again!
And now for that house update! I drove to New Waverly to see what progress, if any, has taken place on the property. I was pleasantly surprised! We are still a long way from having a building, but the development is shaping up. Last time we were there, the dirt roads were still barely drivable, and it was hard to find the road to our lot. I not only found the road, but I was able to easily drive on the hard-packed, grated roads. And the Apple map program can identify our road as well.
Here are a few pictures to whet your appetite. Hopefully the next time we drive out there we will see even more happening to the development and to our lot specifically. This is the entrance to the acreage subdivision where we are building. There are two entrances, and this is the first time I’ve been able to drive in the first entrance. Progress!
Lots of heavy machinery were there working on various parts of the development. Our lot is the only one that has been cleared, as far as I could tell. It didn’t have any trees to clear, but they have leveled it, brought in fill dirt, and clear markers designate where our lot lines and culvert are located.
Sound on – this is our lot and the surrounding lots.Turning left onto our roadOur street Our lotCulvert in front of our lotStanding at the back of the cleared portion, looking at the trees behind Standing in the same location as before, facing the street
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!
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).
———
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!
Children learn the number 100 at an early age, and teachers have many creative ways to help them understand this concept. Recently we had one of our grandchildren count to 100 as we made our way to a destination. By the time we got there, she was surprised to discover we had arrived, as she was “so busy counting.”
We have officially been full-time on the road for more than 100 days. We sold our house in March, and we are building another one. Well, we intend to build another one. You can read the last two house updates here and here to learn more about that story.
Lunch stop in Le Seuer, MN
On this journey, we have already traveled through Texas (we providentially left the state about a week before the hurricane hit), Arkansas, Missouri, Illinois, Wisconsin, Iowa and currently we are camping in Maple Grove Minnesota, which is in the greater Minneapolis area. Between work and other responsibilities, we have participated in Airstream rallies, visited state capitols, presidential libraries, national parks, and witnessed so much of God’s scenic locations. I have made several loaves of sourdough bread, and we enjoy many homemade creations. I think I’ve finally learned how to use the convection microwave, but I have to be careful not to hit “microwave” when I intend to cook in the oven 🥴🤪😳😂. Tim’s pizza was way overcooked that night.
Every time we move from one campsite to another, we start the day with a devotion and sometimes we just burst into song. We decided to start recording these random musings, and we share a singalong with our friends. One take.
So far I’ve only been sharing these on FaceBook, but I know several of our friends do not have FaceBook anymore (including my hubby), so I will add these videos to our ministry YouTube library. They are far from perfect, but we have had fun and felt inspired sharing a few words from Scripture and song.
When we started full-timing it, Tim’s workload was at an all-time low. “Let’s go up north! Let’s visit North Dakota and Montana! Let’s go…” At the time we made these plans his company was not getting a lot of business. The owner was considering staff layoffs (not the consultants). We thought he would have plenty of time to hitch the trailer, travel and site-see.
My how quickly that changed! Almost as soon as we left Texas his company started getting a lot more business. Plus, one of the primary consultants left the company, and now Tim is taking on more of those gigs in addition to making pitches and working with new clients. He is traveling for work more, and we have been diligently planning our trips to ensure we stay in locations where there is an airport, WIFI, good phone signal, and, if possible, Panera Bread 🤪🥴. I even added that to my travel spreadsheet.
I feel like a full-time travel agent on most days 😂🤩🤪.
In addition to Tim’s travel, I have to ensure my visits with MD Anderson for treatment, scans, doctor visits, etc. fit into the travel schedule as well. It’s like when someone puts a lot of sugar in their coffee, we might say “would you like a little coffee to go with that sugar?” Well, Tim and I now say, “would you like a little downtime to go with that travel?”
Aside, I was in The Woodlands for treatment, hence the travel. I also had an MRI of the brain today, and the doctor said it was an excellent scan. They have been following some residual spots, and have determined they are simply post-treatment (post-radiation) spots. They have not grown, and she is confident I am still cancer free in the brain. PTL! 🙏🏻🙏🏻🙏🏻
Tim and I both experienced some travel saga related to the botched Microsoft patch. Tim had to cancel one of his onsite visits due to flight cancellations and no rental cars. I was a bit more lucky on the flight out, but now I am sitting in Starbucks at the Bush Intercontinental Airport in Houston, waiting to see if my flight home from treatment will be cancelled. It has already been delayed twice, so it will be close to midnight when I get home.
Home….is where we park it. ❤️❤️❤️
Each time we stop, we ask ourselves, “what did we break this time?” 😂😂We have had our share of drawers opening, hinges breaking, items flying around that we forgot to tie down, medicine and salt pouring out on the floor. No more spaghetti sauce sagas, fortunately. We’ve learned how to fix things on our own, and YouTube fills in the gaps. Tim is becoming quite the handyman!
Other pantry door. 🤦♀️ I think I forgot to slam it shut.
In the past 100 days we have done several organizational changes, to make our Airstream more livable and durable. I’ve added automatic lights in all the dark cupboards and closets. Tim laughs when I (frequently) use the word “Velcro.” He thinks it’s ironic that we have to use Velcro to hold our expensive Airstream together 😂😂😂😂😂.
In addition to Velcro and zip ties, we upgraded our kitchen in the Airstream to include three gorgeous walnut pieces. We picked two of them up in Wisconsin, and had the third shipped from a friend to Minneapolis. Below are some pictures of our latest additions.
Our new custom-built dinette table. Such a beauty! Much sturdier than the one that came with the Globetrotter, and easier for us old folks to maneuver into the back of the U-bench.
This is our custom-designed sink cover. We took out the white covers that came with the rig (they looked like the ones behind the faucet). This gives us more room to work and is beautiful as well. Matches the table perfectly, and it is food-safe for cutting.
This is our stove cover/ cutting board, also food-safe. A friend of ours is getting into woodworking, so we gave him this one to do. He did a GREAT job! It matches the walls and other woodwork perfectly. I love the walnut. It’s rich and has a nice grain to it.
We used to keep our spices behind the stove on a rack, so we measured to include those behind it. However, now we keep them in the pantry. One less thing to move. If I had realized we were going to do that, I would have had him go all the way to the wall 🤦♀️. Lesson learned. I still love it though, and I can use that little gap for my spoon rest and butter dish.
One more piece of wood for good measure. When we were picking up our table and sink cover from Tayfun (Topics Woodworks), he wasn’t happy with how the sink cover was fitting. It was just a hair too big. So, he offered to make us a new one. Tim said no, don’t waste the wood. Can you just shave this one down?
He fixed it while we waited, and then gave us THIS charcuterie board for our trouble. He’s a great guy, honest, and a master woodworker. We would definitely order from him again.
I think that pretty well catches us up. Thanks for giving me something to do while I wait on my delayed flight. I was starting to get sleepy. 🥱
À la prochaine…hasta la próxima vez…until next time!
I know. I should be tired, right? We sold our house, moved all of our stuff into a storage unit, moved ourselves into our Roam Home, and now we are traveling all over the country pulling said Roam Home.
Whew! Who wouldn’t be tired?
But this kind of tired, apparently, goes beyond the normal temporary moving type of tired. I was tired before we started this whole move and Full-time Airstreaming process. It’s been ongoing since the beginning of this cancer journey. Wiped-out. Exhausted. Fatigued.
I’m the type of person who typically overlooks what my body is saying. I think of others, tasks to be completed, and ignore what my body is saying. I have to ponder really hard about what my body is feeling. Throughout the journey, I have pushed myself to keep going, and I could put being tired out of my head long enough to do what I need to do. So I could function at work, at home, on the road, and continue living each day effectively and enjoyably.
As it turns out, fatigue is an actual diagnosis for about 65% (or more) of cancer patients. It’s not just your every day, run-of-the-mill, normal tiredness. It’s fall asleep at the drop of the hat kind of tired. Narcolepsy kind of tired. Reading a book, my head starts nodding. Driving down the road, I’m drooling. (When Tim is driving, that is 😂.) Practicing my foreign languages, I have to put down the phone and just go to sleep. My body aches. It tells me to sleep. If I don’t listen, my body does it for me.
I’m not complaining, mind you. If I need a nap, I just take one. This is part of the reason I retired early (e.g. went on disability) in 2020. I didn’t need the extra stressors, and I needed the ability to rest when my body says to. My full-time job is fighting cancer, so everything else is just doing what I want.
I finally decided to talk to my doctor. He sent me for a fatigue consult.
The first time he sent me was in 2019, a few months after I had Gamma Knife radiation treatment to the brain, if you recall my history. It made sense that I was fatigued at the time, as radiation can affect your whole body. I had to go downtown for that consult (ugh). But, I was still working full-time as a university professor, and fatigue/focus was a real problem. So I complied.
The doctor I saw at the time prescribed Ritalin, and it helped a lot. I had read where Ritalin is used a lot with cancer patients for fatigue. It’s not just for kids with AD/HD. It worked! I had the energy I needed, without going over the top. I was sleeping better, and I could do my job without falling asleep during the day. I could focus. It was very helpful, and I was glad I went.
When it came time to get the prescription refilled, I didn’t go back downtown. Some time had passed and I convinced myself I was doing okay. By the time my medication ran out we were living in Vero Beach Florida (Tim was doing a temporary interim assignment there). Besides, I was going to stop working soon, so I thought that would help and I might not need the medicine.
I retired in January 2020. Then COVID hit.
Fast forward to June, 2024. I’ve been noticing the fatigue again. Not just since the move, but for the past year or more. Tim notices it more than me. He looks over at me during a movie and my eyes are closed. He sees me walking slower. He observes my focus waning. I talk to my oncologist about it, and he sends me for another fatigue consult.
I’m so glad I did it. This oncologist and her mentor specialize in fatigue treatment for cancer patients. They are the only two around who do this specialty. They have done a lot of research in this area, and recognize how challenging fatigue can be for patients. She explained some things about cancer and fatigue that made a lot of sense. For example, she said that when we have a sinus infection we go on an antibiotic for a few days. We may have some side effects, but they are relatively minor. They pass quickly. An infection is like being on the far left side of the spectrum. Cancer is on the far right. They give us more than a simple antibiotic. They hit us with very heavy drugs to attack a very bad disease. Side effects are exponentially greater. Fatigue is one of them. It’s an actual diagnosis, and when there is a diagnosis they provide treatment.
She is also willing to work with me on the refills. I can meet with her via Zoom for many of the follow-ups (as long as I’m in Texas). Pre-COVID, doctors were unwilling to do this. They had to see you in person. If anything good came from it, we can be thankful for the pandemic changing this mindset.
Some things I can do on my own to help with fatigue include exercise and diet, but she can also prescribe medication to help with the fatigue. Since the Ritalin helped me before, she decided to use it again. She gave me enough to take morning and noon daily if I need it, but I mainly take one in the morning and I’m good to go. Rarely, I will also take one at noon to give me some energy for the afternoon. And, of course, we are exercising.
I was very grateful. I can tell such a difference when I take it. I’m more focused, I have energy, and I don’t find myself looking at the inside of my eyelids nearly as often. Even though I’m not working full-time, having a fatigue specialist sure does make living retirement life a bit easier.
I do still take some naps, but it’s usually when I’ve had an extremely busy day. And I use my essential oils (En-R-Gee in particular) when I need an extra boost.
So now, je ne suis plus fatigué. (I am no longer tired.) It’s a great feeling, and I am very grateful to God for providing me with the best doctors in the world.
À la prochaine…hasta la próxima vez…until next time!
Cheers! I’m done with everything. Just in time for lunch. Bone scan, chemo and CT of the chest, abdomen and pelvis. They had my CT scheduled for 6:00 AM tomorrow so I was so happy they agreed to do it today. Whew! 🤪
UPDATE – My oncologist called, and all my scans are still coming back good. They are watching a lymph node in my abdomen which increased slightly, but they are not concerned. My body remains stable. Stable means there is no progression. But, stage four cancer (metastatic breast cancer) never goes away, so we stick with the program.
PTL . God is so good! I don’t deserve it, but I’m so glad He’s not finished with me yet.
I am living John 10:10 (living life abundantly) the best I can. I believe God is healing me, keeping the cancer at bay, and giving me strength to continue. Could I choose to quit treatment? Yes. But we don’t know what that would do. No one has ever tested it, and likely never will because who would want the risk? My cells seem to attract hormone and protein driven breast cancer, so the treatments I get with infusions as well as a daily pill protect my cells from the invasion. I’ll never stop treatment unless the doctor says, “you’re cured,” (which doesn’t happen for the reasons I already stated). Instead, I get regular scans to ensure there is no progression, doctor visits to prevent complacency, and treatment to ward off the demons.
À la prochaine…hasta la próxima vez…until next time!
