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!
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!
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!
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!
I love the cover, as the emotion is so evident in the lives of these children. I envision Rill on the left, who felt totally responsible for taking care of her siblings.
Before We Were Yours by Lisa Wingate was selected for our April book club. This one was much better than the last one, but it was still a difficult and sad story to read. The story is based on a real place called the Tennessee Children’s Home Society, whose owner Georgia Tann tricked families into giving their children up for adoption (and even stole babies who were born) so she could traffic them and make money. She made a lot of pretenses about helping the children and taking good care of them, and wealthy celebrities supported her endeavors, but the book reveals the truth about the woman and her place through the eyes of some (fictitious) children who lived through it.
The shanty boat families were intriguing. Families who could not afford proper housing lived on a house boat on the Mississippi River. They kept to themselves, to avoid problems with the law. The main family that was followed in this story loved living on the river, and the children didn’t have any inclination that they were disadvantaged. They fished for food, and rowed into town for other necessities. When their mother was in the hospital giving birth to twins, Rill and her four siblings were taken away and placed in the Tennessee Children’s Home Society; their one piece of comfort was dreaming of the day they would go get to go back to the shanty boat and live with their parents. While this family is fictitious, there are pictures of shanty boat families in the book that I would imagine this family to resemble.
The story doesn’t begin there. It’s another novel that goes back and forth in time (we seem to be reading a lot of those lately). In the present day, Avery Stafford is with her Senator father attending a lady’s 100th birthday celebration at the nursing home where her high society grandmother now lives. A new resident at the home named May Crandall comes up to her and grabs her by the arm, and calls her “Fern.” Although a bit startled, she is intrigued. This event leads her down a path to solve a mystery, especially when she follows May to her room and sees a picture of May and her own grandmother on a table in May’s room. The book really takes off toward the second half, as Avery is learning about her grandmother’s hidden past, while learning about her own heritage in the process.
I shared a personal foster story with my book club, based on one of the questions in the book. There were a set of boys at the orphanage, who reminded me of my foster brother Jerry Meyers. He lived with us for two years from the time starting when he was 11, the same age as my brother Shawn. I was 7. If you were friends of my family back in the late 60s early 70s, you may remember Jerry. The boys in the book’s orphanage were incorrigible, as was Jerry, and older boys were rarely adopted. They felt unloved, and therefore acted unloving toward others. Jerry had been tossed back and forth from one foster home to another so he never learned how to love or trust his family. My mother made it her mission to love Jerry with the unconditional love of Jesus, and he had a radical transformation under her care. After two years his father (who had basically disowned him) decided to take him back. Why not, he was much better now. We saw him once more when he turned 18 and sought out my mother, but then we completely lost touch with him after that. I often wonder what happened to Jerry.
Anyway, the book was very good. It touched on a lot of emotions. It was a hard story to read, but an important piece of history. We discussed human trafficking, and how it still happens today. It’s just harder to put a name or face to the perpetrators in our day. Somehow Georgia Tann got away with this for three decades, but she died from cancer before the investigation could result in a conviction. I wonder how many others are getting away with this today because people are desperate to adopt a child, and they put their faith in an entity that they know little about. Definitely food for thought.
On a lighter note, it has been two years since they started the book club at the Canopy, and thus it was time for a celebration. the Canopy provides a variety of support services to cancer survivors (and warriors), all for free. They also sponsor my Spanish class. Click the link if you or a friend want to know more about how to get involved in the Canopy.
Here is our fearless leader’s synopsis of our time together.
Eight of us gathered to celebrate our second anniversary of the Canopy Book Club. We all liked the book and thought it was an easy read and some of us would read it again!!!! Especially since the names of the children had changed at the Tennessee Children’s Home Society by the terrible Georgia Tann. We all couldn’t believe that a Memphis woman could cause so much pain, death and child trafficking and people went along with it for decades. We discussed how Rill/May and her siblings were so poor on the Arcadia but were so loved by Queenie and Briny and they never forgot it. We discussed how the sisters kept their history to themselves rather than sharing it with their families.
One woman shared a family secret that she found out through researching her genealogy but kept it to herself. We talked about adoption and another member shared the journey of both her children who have adopted children and how different the birth mother’s stories were. This was such a sad and heartbreaking story but we all thought it needed to be told.
We rated the book 8.4.
À la prochaine…hasta la próxima vez…until next time!
I had my annual echocardiogram yesterday and saw my cardiologist. Everything looks good. Even my cholesterol is in the normal range. It’s a beautiful thing! She said I should exercise “150 minutes per week.” That could be 3 days for 50 minutes, or 5 days for 30 minutes, etc. We walk, but it could be a bit brisker for me and we probably need to be more consistent.
I wish I could say I was laying there taking a nap, but it’s impossible to sleep when the tech is jamming the wand into your ribs to get pictures of your heart. 🙄🥴😂 Fortunately I am only required to have this test annually now, and they no longer do contrast. So no pokes for blood, and a shorter time in the scan.
Today I gave blood for the second time in two days, then saw my medical oncologist. Tim went with me to that one “for quality control.” Dr. K. laughed and asked whose quality is he controlling, mine or his 😂😂🤪🤪. The doctor referred to me as “people like you” as we talked, meaning I’m off the charts in terms of lifespan with metastatic breast cancer. They don’t really know whether they are over-treating, and no one will ever do a study to determine that. As long as I am tolerating it, we are good to keep going. After this many years of treatment, he said it is easy for one to become complacent. He is always guarding against complacency, and I appreciate that.
Every time there is any little something that comes up, he sends me to see another specialist, just to be sure. First, the brain lesions are likely just increases in hot spots due to the radiated areas, but the specialists will determine that in April after my follow-up MRI. Second, I’ve had a little lung issue with spots showing up from time to time (coming and going), an ongoing cough, occasional shortness of breath and fatigue. My cardiologist said it doesn’t sound heart related. So, Dr. K. is sending me to a pulmonary specialist. No emergency. No rush. Just making sure he is covering all his bases. Third, I have had some headaches with an increase in double vision (not likely related to the brain spots). So, he wants me to see an opthalmologist. Not a bad idea; I was already considering it.
While I don’t look forward to adding more specialist visits to my list of providers, that’s what I love about my oncologist. He never assumes everything is just fine unless the specialists tell him so. He listens, and responds accordingly. It’s better to go see a specialist and discover nothing is wrong than to not go and allow it to escalate.
At this writing I’m getting my treatment (Herceptin and Perjeta), which I do every three weeks. That’s the last of my medical appointments for this week, and then we can play.
I’m wearing my Airstream shirt because we are hitching up the trailer right after this and leaving for a Bluebonnet Rally in Brenham. They got me in early today and I have a very efficient nurse, so that’s a double blessing! Looking forward to seeing some beautiful bluebonnets!
“Lord, You restored me to health and let me live.”
Isaiah 38:16b
À la prochaine…hasta la próxima vez…until next time!
I just realized I never posted this book review, so I’ll back-date it. Tim and I were on our way to watch the Wheel of Fortune taping, so I was unable to make it to the book club meeting in January. There should be a post about that bucket list item somewhere in my blog list 🤩.
This picture was taken on chemo day. I often take books to read and an engaging discussion with my nurse ensues. Often they write down the titles, or give me suggestions from their book clubs.
We read The Midnight Library by Matt Haig, an intriguing book about the concept of “parallel universes.” I recall a Seinfeld episode about this concept! The book explores many of the potential branches in the life of Nora. She is transported into that life, to live as though she had made a different decision. It provides great insight into how one’s life of regrets, decisions, and relationships, may not have turned out any better than the actual life he or she has lived.
I sent my review via the following email, as we flew out the day of the meeting.
“We are standing in line waiting for our plane to board. I hope y’all are having a good meeting! I wish I could be there for this discussion. I’m curious what others think.
I still have 50 pages left, and I’ll probably finish it on the plane [I did]. Nora just entered her “perfect life” with Ash and daughter Molly. It is a rather captivating book, so it wasn’t for lack of desire; I’ve just been busy this month.
Interesting concept of parallel universes. Certainly makes you think about those Deja vu moments in life. Also made me think about some past regrets. Choices I might have liked to change, but after seeing Nora’s life experiences with overcoming those regrets and the ensuing consequences, it makes me glad to have this life and just live with my choices. Her alternate lives did have some valuable lessons. Maybe we can learn from that as well. I’d rather remember a life that isn’t perfect than to have no memory of it at all.
Lastly, I loved the Thoreau references. Makes me want to read some more of his work.
Anyway, just a few thoughts before I get on the plane. I would rate it an 8.0.
I did finish the book, and I liked the way it ended.
Here’s what the group said.
Good Afternoon Ladies!!!! Eight of us gathered to discuss The Midnight Library by Matt Haig. Our discussion varied immensely about “regrets” and different outcomes that your life can take or could have taken. Some of us had a hard time getting into the book with the countdown of Nora’s death in the first nine chapters. But once Nora goes to her different realities or “lives” the book gets very interesting. We described the book as self discovery and discussed the good and bad of her different realities. Each of us thought about how important it is to live and let go. We loved the reality of her with a family but Nora realized that she didn’t earn that life and decided she wanted to live and earn her own life. We rated the book an 8.3.
I’d love to hear your thoughts about a parallel universe, or if you have read this books what are your thoughts? Please comment below. It will prompt you to input your email address, but I promise I will never sell it. This is just to ensure you are a real person and not a robot.
À la prochaine…hasta la próxima vez…until next time!
Today is chemo day, so I’ll take a few minutes to write an update. Tomorrow we are leaving for Natchitoches Louisiana for an Airstream Rally at the Christmas Festival of Lights.
#chemoday
I’m on an annual schedule for echocardiograms, mammograms, and MRIs of the brain (is that all??🫤🤔. Every three months — or sometimes a little longer — I also get the following scans. CT of the chest, abdomen and pelvis, and whole body bone scan. It takes about a half day, as they access my port, inject me with the nuclear medicine and then I have to wait two hours for the bone scan (which takes 30 minutes by itself). While I’m waiting for nukes to penetrate my body, I drink the contrast and get the CT scan over with. After it’s all done, they de-access my port. I usually need a nap after all that. 🥱🥱😴
I had my usual scans on November 22, 2023. It took a little while to get the results due to Thanksgiving. Added to that my annual mammogram (left side only). Nothing to worry about, but here are the brief impressions.
CT: “There are new indeterminate less than 5 mm pulmonary nodules. This this can be evaluated with follow-up imaging. There are stable bone metastasis.”
I have several spots in my bones that show up in the scans. Most likely it is degenerative. I do have back pain, but doesn’t everybody at my age??
Bone Scan: “1. Probably stable multifocal bone metastases. 2. Slightly more prominent activity in the lower thoracic spine is favored to be degenerative rather than metastatic, recommend close attention on follow-up studies.”
Mammogram: “There is no mammographic evidence of malignancy. Follow-up mammogram in 1 year is recommended.”
I have a cold, and coughing up phlegm. I believe those are the “nodules” on my lungs. I guess we’ll see in a few months when we do the update, but I bet they will be gone by then.
All in all, still stable! Thanks again for all your prayers.
À la prochaine…hasta la próxima vez…until next time!
Things you might hear while waiting for MDACC nurses to call your name for chemo… (Old cowboy wearing boots and hat, on his phone with a stereotypical Texas drawl):
“I have a .22 and I was wondering if you have a night vision and scope, and can you put it on there?” 😂😂
Long chemo day. One bag down, one to go. Whenever I go more than three (Trastuzumab) or six (Pertuzumab) weeks without treatment, we have to reload. That means one bag is an hour instead of thirty minutes and the second bag is ninety minutes instead of thirty. It’s been a while since I had to reload, so I kinda forgot how long it was. The infusion time is in addition to accessing the port, flushing, heparin and de-accessing the port, with a prayer that we get good blood return or additional processes have to take place. My appointment was scheduled for 12:30. I’m still here at 3:13, and just started on the ninety minute bag.
Before lunch I also saw my oncologist and his nurse, who were particularly chatty today, about books, family stuff, Netflix series and they were eager to hear about our Airstream trip. And of course we discussed medical updates, time for scans, yada yada. Honestly, I enjoy seeing them. It’s like visiting with old friends every time I go in. Today is the first time I have seen their faces without masks for over three years. (They took them off inside the room.) That was an especially nice change of pace!
Before the doc was the blood draw, which took a while to get in. This first visit to the building came with an interesting surprise as well. Funny how much can change in just a few weeks; we were greeted by large, green construction fences all along the north(?) wall. They are expanding their handicapped parking next to the building. They should have done that all along. Apparently the patients were complaining about having to walk too far from the current handicapped parking. I’m happy. More spaces for me as well.
As if that isn’t enough, we got up early this morning to take our son to the airport and then Tim went to the dermatologist (he needs another biopsy) while I sat in Panera Bread and read my book and ate breakfast. We decided to drive together, which Tim might be regretting now that he has decided to sit here in the room with me. Usually he drops me off and picks me up, a habit we never changed after the pandemic.
❤️❤️ He decided to sit with me. ❤️❤️
This evening, I’m taking two of my grandkids to dinner while Tim will be in a church meeting. We will wrap up the day saying hello to our overnight guests, who are staying at our house while we all go to the Texas General Assembly meetings this weekend.
Whew. 🥴
Funny how you can have a whole week without much to do, and then multiple things seem to all converge on the same day. Has that ever happened to you, or is it just me? That’s the way of life sometimes. Keeps us on our toes, for sure. I’m just grateful to the good Lord for giving me the energy to do it all, tenacity to keep going, and a passion for enjoying life.
Might be time for a nap. I do have my pillow and blanket while getting infused, after all. 🤪🤩😁🥴
He gives strength to the weary and increases the power of the weak.
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.”
Isaiah 40:29; Psalm 28:7 (NIV)
À la prochaine…hasta la próxima vez…until next time!
Baby Olivia Jade West was born to our son Bryan and daughter-in-law Bree on June 30, 2023. She was over two months early, born at 29 weeks gestation. She was 11.5 inches long weighing 2 pounds and 14 ounces at birth. She was immediately placed in the NICU, where she has been ever since. This is just a brief history of her first month of life.
She is our seventh grandchild, or as Tim likes to say, our seventh Jedi. Seven is the number of perfection, so we think this is the perfect number of grandkids. ❤️❤️❤️❤️❤️❤️❤️
Olivia’s APGAR scores were normal, as for any newborn, so for that we were grateful. Her lungs were strong, and Bree was relieved to hear her cry almost immediately after birth. She got to hold her for about a minute, then Olivia was whisked away to the NICU. Mommy had some hemorrhaging, which they were able to stop, but once the baby was born her body bounced back pretty quickly. It was a few days before mommy and daddy could hold her properly.
They put her in an incubator to help regulate her temperature, and hooked her up to a CPAP. Not because she needed oxygen, but to help force air into her lungs so she didn’t have to work as hard breathing. She needed all the calories to go toward growing. She also had a feeding tube down her throat, and has been fed through the tube ever since.
We got home on July 2nd and went to see her with the whole family the next day. She was SOOOO tiny.
Since then we have seen her grow to over four pounds. They have removed the top from her incubator as she is regulating her own body temperature. They just took off the CPAP and moved to a nose tube for feeding. I was in The Woodlands and stopped by after treatment. I happened to get there right before they put in the tube, so I took some pictures of her cute little face and watched that process. She did great. I held her for the first time while she was eating. I’ve never held a baby that small that I can remember.
First time holding my little granddaughter. One month old. I had just come from MD Anderson so they covered me in a blanket. It was so cozy.
Praying for Baby Olivia.
Tim and I also stopped by to see her a couple of days later.
Within a few days they told me they were going to start feeding her with a bottle. They hadn’t started yet when Tim and I went by to see her. I haven’t been back yet, so I just checked with Bree on her progress. She said they haven’t started feeding with a bottle as they put her on a nasal cannula for breathing. (This was after the CPAP was removed. It’s common for them to go off and then back on oxygen.) They want the strength of her nasal cannula at a 2 and she’s at a 4 right now. She’s doing good.
They’re also giving her a diarrhetic for a couple days to see if excess fluid is making it more difficult for her to breathe. From what they explained to Bree, as soon as she’s breathing easier they will start to try feedings, and once she takes a full feed every feed for 3 days she comes home.
From what I understand, when they start feeding her with a bottle, it will be a slow process. She has been sucking, so this is a good sign. Apparently premies get tired easily and can’t down the whole bottle at first. What she doesn’t finish they will put in the tube. The nose tube stays in until a couple of days before discharge, when she is eating a full meal on her own.
We are hoping she comes home within another week or two, but the projection has always been her due date (September 9, also my birthday). We watched Mikayla on Saturday while Mommy and Daddy spent the day cleaning their apartment and disinfecting to avoid any possible germs. They are ready! We can’t wait to see her come home!
Thank you all for your continued prayers of this little one, and the family as well.
À la prochaine…hasta la próxima vez…until next time!
