Category: Uncategorized

Since last I posted, Sarcoma L. Jackson has been forcibly removed from Travis’ body. The surgery was on Thursday, August 8th and it lasted around 7 hours. Life has been ‘upside down’ since that day. I have been working on this post for 3 weeks because life in any facility that involves nursing has continuous interruptions, it’s how it has to be to care for the needs of the patient.

That said, this post will require an abundance of passive voice which will give me a low score on the readability analytics that grades my writing for this blog. Hahaha. In full knowledge of my low ‘grade’, I present to you my brief reflection of the events on August 8, 2024.

6:00AM Arrival

On surgery day we arrived at the hospital around 6:00AM. Our amazing pastor was already there waiting for us in the main lobby of the hospital. I helped Travis check-in and paid the highest co-pay that I have yet to pay for medical care. Maybe five minutes in the waiting area, they were calling for Travis to go to pre-op. We had a prayer with our pastor and then he was taken away.

I was called back a short time later and spent time with Travis in the prep area prior to the O.R. team giving him an epidural. Anxiety, nervousness, fear, second thoughts all traveled through our minds. We prayed and held hands and suddenly the surgeon appeared with nurses and anesthesiologists. It was time for one last hug and kiss and I left Travis to return to the waiting area.

My parents arrived while I was with Travis and it was wonderful to see them settled in, talking with the pastor and my deacon from church. Tropical Storm Debby was passing through the Commonwealth and we occasionally noticed it when we looked out the 5th floor windows of the Gateway building.

If I am remembering correctly, it was late in the 7:00 hour when I left Travis in the pre-op room. Inserting the epidural is a sterile procedure and I was asked to leave. I’m glad that they asked me to leave, Travis later described how it felt and I don’t want to witness that procedure anytime soon. I sat in the waiting room with my amazing crew of support and the text messages, which were little crumbs of information, began.

Text updates begin.

The first message reads, “The patient is doing well. The case has started.” The time stamp on that is 10:17am. I do not know what was happening for the two hours between my leaving Travis and receiving that text. I assume it was all preparation for the operating room and the team going through the plan for the procedure.

The next message reads, “Hello, procedure is still going as planned. Patient is doing well”. This arrived at 12:30, which makes 5-6 hours of sitting in the waiting room with the most wonderful people on earth. At this point, my stomach is ready for some nourishment. My parents were also ready to go find something to eat so off we went in the search of Chick-fil-A.

Anyone who has visited VCU Health in downtown Richmond will understand the adventure on which we embarked. The downtown campus is a conglomeration of several buildings all connected into a confusing maze for people who are not there everyday. Thankfully, a fellow person in the waiting area had just returned from his lunch to give us a bit of direction. We quickly found the cafeteria/food court in the main hospital. Sadly, we were landing there at the same time as most of the people in the hospital. Our wait to order and get our food was actually less than 10 minutes. The more difficult task, finding an open table for three people.

Once we found a table, the three of us enjoyed our lunch with a view out the first floor windows facing Marshall Street. We could see the ‘Egyptian building’ and the Monumental Church that VCU purchased many years ago. My father regaled us with a story about the community protesting the destruction of those buildings as soon as the caution tape appeared at the site in preparation for demolition. Long story short; the pharmacy building, that his company was contracted to build, was built on the opposite side of the hospital. As my college friends like to tease, “Virginia, it’s so historic!”.

It was a nice distraction to hear that story during lunch. Afterward, we returned to the 5th floor of the Gateway building to sit in the waiting room again. At 2:20 the next text arrived with the same message as the 12:30 text, “Hello, the procedure is still going as planned. Patient is doing well”.

Pause for Prayer.

The pastor from our church had a plan that we pause every hour and join hands to pray. He led each prayer and offered that anyone could add onto his prayer. My mother always added in all the people who were in surgery and their loved ones who were waiting with us. In between prayers, we took time to listen and tell stories with one another. It very much helped the time tick by quickly.

Another text message arrived at 4:09, approximately 8 hours in the waiting room now, praying that it will be the final message. The message reads “Hello, The tumor is out and the case continues. Patient is doing well.” This is when I realize that they still have to put in the steel plate and close up the surgical site. However, the main reason for the surgery is achieved. Sarcoma L. Jackson has been evicted! Travis’ parents arrived during this hour and joined into the story telling and prayer circle.

We praised God for the surgical team accomplishing the main goal of this surgery and I prayed that they have enough strength to continue their good work. The rain and the wind picked up outside and the flags on the government buildings down the street stood straight, snapping in the strong winds. Now we wait for the word that it is finished. Late in the 5:00 hour, Dr. Domson appeared though the door where they had wheeled Travis about 10 hours prior. Dressed in fresh scrubs and looking exhausted, he came to collect me for a post-op conference. He said that anyone I wanted with me could also come so the four of us; my parents, my pastor and me, followed him to a ‘very wee’ conference room.

Meeting with the surgeon.

During the meeting we learned that the tumor was very difficult to remove. The surgeon struggled to peel it away from the vein and artery leading to the leg and it had pressed against the lymph nodes so he removed those as well. He was confident of the clean margins with the bone; however, the sarcoma ‘leaked’ into the area as it was removed, which means radiation treatment will likely have to happen. The lymph nodes were sent off to pathology to be tested but we have not heard anything about that as of now.

We were given time to ask questions and I remembered to remind the doctor that Travis needs a CT scan while he is in the hospital. He typed out the text message immediately and asked if we had anymore questions. We all sat silently for a few seconds and then I gave my thanks to him.

The doctor walked us back to the waiting room door and my Mom was so overjoyed that the surgery was finished, she stopped in the hallway to give me a huge hug before we got to the waiting room. I recall catching a glimpse of the doctor, a smile broke through his exhaustion and he gently touched my mother’s shoulder. What a lovely moment.

The next few minutes were pretty much a blur. Our pastor had to head home, after his 12 hour day. Soon after, my parents left to drive over an hour back home. I was talking with my sister who lives in Oregon when they gave me their ‘goodbye’ hugs. When I ended that call, my immediate family knew the surgery had finished and I sat in the waiting room alone.

All by myself but not alone.

I looked into the gloom of the storm raging outside the window and praised God for such a glorious day. My thoughts traveled to the people who had been in the room with me and I prayed that they were safe in their travels. The aches in my body became apparent and I walked around the room waiting for word that I could see my husband.

The final text landed at 6:11 PM reading, “Patient is now out of the OR/Recovery and is being transferred to .” Yep! That is exactly what the text says. In musical terms this is like singing an entire tune and stopping before the last note. Ahhhhh! I took a picture of the procedures screen, this is all that remained of the two screens that continually scrolled during the day. Procedure number 1188000 is the one I scanned for all day.

Sometime in the 7:00 hour my phone rings and I see a number that I don’t recognize. The voice on the other end asked if I was still in the building and I answered ‘Yes! The 5th floor waiting room’. It was a post-op nurse calling to collect me so I could see Travis. Finally, 12 hours later I see my husband in a much different condition than when I left him. His eyes struggled to stay open and his normal baritone voice range was sounding very bass. A lovely sight and lovely sound even though it was not the norm.

We were there for about an hour when the call came that a room was available. My favorite moment from Travis during our wait was his response to my question “How do you feel?”, he growled and said ‘Roy Kent’ and I once again laughed at my husband’s humor.

Moving on up!

Soon we were rolling Travis up to the 11th floor of the main hospital to the Orthopaedic surgical recovery wing. This is when I realize that I will not get home to feed the cats anytime soon and our amazing friends William & Tammy agreed with very short notice to stop by the house to feed the ‘furbabies’! That was a worry removed. I stayed with Travis until he felt comfortable enough to fall asleep. I gave him a kiss goodbye with a promise to return tomorrow.

Heading home.

Time to find out how to get my car which I had left with the valet at 6:00AM. At 10:30PM there was one person waiting for anyone like me. She took me on a hike through three hospital buildings and out to the parking deck. The rain had stopped and the warm, humid wind was still blowing from tropical storm Debby as we approached my Tiguan. She clicked the unlock button for me and stayed long enough to see that my car would start and we waved goodbye. I sat in my car for a moment and asked God to help me get home safe and sound. My overwhelming feelings were gratitude and doubt, driving my car felt strange.

As I drove closer to home, the wind and rain picked up and, in the dark. To my annoyance, other drivers seemed to drive less cautious than me. Finally, I arrived home! I greeted the cats and sat in the Lazy Boy recliner. That is the moment I finally realized the exhaustion I was feeling and I just gave into it. I didn’t make it to the bedroom for several hours and I had a most glorious nap with an orange tabby cat on my lap. Thank God for pets who comfort us!

My comfort cats

That brings me to the end of the longest day of my life thus far. Thanks for going on the journey with me. Keep up the prayers because the hard part now begins, the road to recovery! More learning to come.

I’ve been to Chicago and back and then to Chapel Hill, NC. Afterward, a few days to recover from all the fun, learning and excitement and then get Travis to a very important doctor appointment. Thankfully, CrowdStrike did not mess up any of my travel. It did cause problems for the keynote speaker at my conference in Chicago. We did see and hear him thanks to Zoom and some amazing problem solving skills that music educators have developed. I’m sure that you are familiar with the phrase “The Show must go on!”. In all, the conference was worth every penny, minute and inconvenience.

I belong to an organization called Feierabend Association for Music Education (FAME), and this is the first conference that I have been able to attend in person. During the Covid pandemic, I attended the virtual conference from the comfort of my couch. Learning in person is still better for so many reas0ns; I was able to make face to face connections with my fellow music educators, use all 5 senses to experience the conference, and socialize with new friends from all around the world. Plus, meeting in person allows us to participate in folk dancing.

Sanna Longden

Here is an ‘Ussie’ I took with an amazing dance educator. I first danced under the direction of Sanna Longden while I was at Appalachian State University. She has traveled around the world teaching and learning cultural dances. Her focus is on folk dances and she teaches how all humans can find a respectful, peaceful, connection through movement to music. I love that she is still presenting and that FAME honored her for her many years of movement education. Plus, her sense of humor reminds me of my grandmother who lived in Chicago.

Another favorite event at the conference was experiencing ‘Circle Singing’ for the first time. It is improvisation at its finest! Sadly, the closest circle singing group is 2 hours away in D.C., so I will have to find another way to learn and grow in this ‘new to me’ singing ensemble. I understand that Bobby McFerrin hosts a circle song school each year on the West Coast. Here is an example of a way that a circle song works. You should notice short repetitive vocal motives (ostinato) that are layered. About 2:00 in, Bobby starts directing changes. Watch for as long as you like.

Pharmacy

I’m sitting here listening to my husband struggle getting his pain medication from Walgreens. I completely understand why certain hoops are in place for a medication like oxycodone and I hate that he has to take this medication. However, it is what helps him survive the pain caused by Sarcoma L. Jackson. He is defending his doctor’s approval of an early refill and even the insurance has approved the new script. Walgreens will not refill this because 15 days has not passed since the previous filling of the medication. Now he is informing the palliative care doctor and hopefully they will have a solution. He only needs to make it to August 8th, which is one week away. That is the day he is scheduled to have S. L. Jackson removed from his body!

Surgery

After ten weeks of wading through doctor visits, failed & successful scans, insurance workarounds, and being released from the community hospital; Travis is finally scheduled for surgery on August 8th at VCU. He is having a hemipelvectomy with fusion. This means that the left half of his pelvic bone will be removed and a metal plate will be attached so the femur can be fused to the metal plate. The procedure will last 5-6 hours and will likely be scheduled for the first slot on that day. He will begin his recovery in the hospital for 5-7 days and then we will find out about home health care or a rehabilitation facility. Travis will have to learn how to walk with a shortened left leg.

We are keeping our eyes on the prize which is removal of the sarcoma with clean margins! If you are willing to say a prayer, please mention Dr. Domson and his surgical crew. It will be good to know that they are being prayed for as they take care of my husband. I also hope the pain medication issue can be resolved quickly. I will continue to focus on the things that I can control while I pray that God will help with the things beyond my control.

Great Sports!

During my travels for work related events, I like to take time to enjoy something in the area that I can not experience at home. I considered taking a river cruise to learn about the architecture in downtown Chicago. However, I chose to visit Wrigley Field and watch the Cubs lose to the Arizona Diamondbacks again. StubHub got me with their fees and taxes and I still only paid $35.00 for a seat looking at 3rd base that was completely in the shade! My Uber ride to downtown from Alsip was more expensive than the ticket. It will be a long time before I have a chance to sit in what my Uncle Tom calls ‘the cathedral’, which makes the money spent just fine with me.

Wrigley Field

I missed the first inning because of traffic, imagine that?! The Uber driver had to drop me few blocks out because the police create a perimeter around the park before, during and after the game. So, when I arrived it was the top of the 2nd and it looks like I didn’t miss too much. It was 80 degrees and the wind was blowing in from Lake Michigan. In other words, it was lovely for me and not good for homeruns. The amazing thing is that the Cubs won the game and I enjoyed singing the chorus of “Go Cubs Go” with all the other fans in Wrigley, a first for me!! The game went into the 10th inning, so I actually got to see 9 innings, hahaha!

Go Cubs Go!!

As soon as I returned to Richmond, I left again for Chapel Hill. This time it was a two and a half hour drive down to Durham where we stayed in a nice new hotel. My sisters were with me for the next sporting event. Manchester City Football Club from Manchester, England is traveling this year for the FC Summer Series. This is my first chance to see them in person and my older sister is also a fan of Man City so we made arrangements to get there. We also decided to see if our younger sister is willing to fly over here from the West coast to join us and she jumped at the chance.

Soccer or Football?

So here we are in the University of North Carolina’s football stadium to watch an ‘English football’ match. As we arrived, fans were leaving the stadium because of a lightning delay. We only waited 20 minutes and they started to let everyone back into the stadium. The three of us were ready for rain but it held off until we returned to the hotel!

The opponent, Celtic FC, is no slouch of a football team. They just won the Scottish Premiership for the second year and their fans came prepared to cheer their team on to victory. They also earned a few new fans. My younger sister thoroughly enjoyed the cheers from the Celtic fans and we all giggled as the booed for Grealish each time he had possession of the ball.

Though my team did not win, that did not stop us from purchasing over-priced t-shirts. As always, the best part for me is spending time with my sisters and catching up with one another while making new memories together. Such Fun!

That’s all for now

So that wraps up the highlights from the past two weeks. I enjoyed my travel thanks to all the people who helped check in on Travis. I have mixed feelings about Travis’ upcoming surgery and an overwhelming sense that it is the best course of action. With Summer break coming to an end, life is about to move to a new level of complications. To manage it, I focus on all who have offered their support to us and this passage “I can do all things through Christ who strengthens me.”-Philippians 4:13

A moment of reflection last week.

This is a video of the fountain outside the St. Francis cancer center. It provided a moment of Zen while waiting for Travis to complete simulation for radiology. On July 2nd our weather was 60 degrees in the morning with low humidity, so I took advantage of the opportunity to sit by a rather loud fountain and let the white noise clear my mind.

Sadly, it did not last long because I had a call from the garage that was changing the oil in my car. They wanted to know if I would like to get ahead on an upcoming mileage maintenance. All I could hear was, do you want to spend more money? Nope.

As I sat back down to enjoy more white noise from the fountain, I received a text from Travis saying that he was done, so it truly was just a moment of Zen.

Trouble with the curve.

That is the title of a wonderful baseball movie from 2012. However, this is about life throwing some curveballs our way last week. Travis is struggling with completing scans because they require his leg to be straight. The tumor begins to wreak it’s havoc within 2 minutes and he can not sit still due to all the pain he is feeling. Mapping for radiation had to stop last week and that is why my moment of Zen at the fountain was cut short.

First, we were told that MRI/PET scans will need to be done with sedation. Now, he is taking so much medication for the pain, they will have to give uncomfortably high levels of sedation. Now the recommendation is for general anesthesia.

We understand that anesthesia requires a different team of medical professionals from sedation. They cancelled the MRI and PET scans that were supposed to happen last Friday and Saturday. As of yesterday, St. Francis is still trying to schedule the MRI. For the PET scan, we need to have VCU schedule that.

On top of all of that, insurance will not approve the PET scan currently. Either they don’t know about the Leiomyosarcoma diagnosis or they are ding-dongs who need to do some research about this sarcoma. I hope it is the former and I hope one of the doctors on our ‘team’ is able to make some magic happen.

The first curveball.

I am getting ahead of myself, I need to let you know about our visit with the orthopedic oncologist last Monday and why we are eagerly anticipating these scans. Dr. Domson at VCU threw a lovely curveball at us saying surgery seems to be the best option for this sarcoma and recommends not starting radiation prior to another consultation with him. He is certain that radiation will remove all chances of a successful surgery. However, he needs more information prior to formulating a plan for surgery.

At that point in time, Travis had an MRI scheduled for Friday the doctor wanted to see us Monday, yesterday. Guess who we did not go see yesterday? Without the scans, there is no reason to see the doctor. That is the first curve ball that brings us to the anesthesia curveball. Do you see why I am having trouble with the curve?

Surgery.

To circle back again, Travis was not expecting to hear that surgery is the best option for this sarcoma. We are ready for radiation to reduce this and make it shrivel up and disappear. (I can hear Supertramp singing in my head right now, “Dreamer, you know you are a dreamer”.)

Was I silly to think anything about this is going to be quick and easy? All of it is made more complicated by the rare nature of sarcoma. Additionally, the doctor said this sarcoma seems to be in bone not just smooth soft tissue, another rare trait for leiomyosarcoma.

Chances for surgery are good if the PET scan reveals that leiomyosarcoma is not appearing in other parts of the body and if the MRI can give the surgeon a better picture of what the mass has already done in the hip.

Travis rescheduled his appointment with Dr. Domson to next Monday. Meanwhile, we do our best to patiently wait for some word on these necessary scans. If surgery is recommended, it will mean a long recovery and loss of mobility with no more sarcoma in the body. On the other hand, radiation alone will also lead to loss of mobility. Either way, it seems that Travis will have a lovely left sided limp.

Daily, I remind myself to breathe and pray that God will send us the right person who can make things happen for Travis.

There’s always a funny moment.

My husband still makes me laugh out loud! For a seasoned teacher who has learned how to control laughing at all of the burps, squeaks and toots that emanate from little humans at school, it takes something good to get me laughing. Travis always seems to manage.

An unexpected question.

The nurse in radiology asked Travis if he has named his tumor yet? What? Yes. She explained that her mother decided to name her tumor. So she is wondering what Travis has named his.

Let me put you in Travis’ frame of mind. He finds out he needs to have surgery which will cause years of recovery. For the second time he is told not to begin radiation therapy. He is walking with a cane, dealing with a rising pain level despite all of the medication that should be helping. After six weeks of physician visits, we are no closer to starting a solution for this sarcoma. He is feeling tired and very frustrated.

Travis says to the nurse that he has not thought of a name but he often calls it “mother-*!#*@#” so that might just be it’s name. That is when Travis realized the radiology oncologist was walking behind them because he let out a huge laugh at Travis’ answer. I’m so glad they have a wonderful sense of humor in the radiology oncology department.

On our way home from this visit, he tells me this story and I laugh and agree that I hear it called that name on occasion. Then his mind wanders and he says he should call it Samuel L. Jackson or how about Sarcoma L. Jackson. So if you ever hear us refer to S. L. Jackson, you know that it is code for that other word that should not be used in polite company!

Music charms the soul.

This ukulele has seen me through some difficult times. This is certainly the most difficult time of them all.

Love at first strum.

When I saw this instrument at our local ukulele festival, I walked past it because I don’t like the design on the body. I prefer something more simple, less embellished. After I picked up all other ukuleles they had on the table, I decided to try this one. I am very happy that I did try it!

The sound of it pleased my ears and sang to my heart. Also, it ticked many boxes; concert size, matte finish, around $100.00. In fact, it was a little more than $100.oo so I called my husband to see if he was okay with me going over budget. You can see that the answer was ‘yes’. Here’s a video of someone performing a sound test on an Ortega RU5 Bonfire series, similar to mine.

I play this ukulele the most of all the ones I own. I added a low sounding string so it will sound linear in it’s tuning rather than the usual “My Dog Has Fleas” tuning with a high G. It’s amazing how much depth and richness it adds to the chords, plus it allows for a wider melodic range.

When I’m feeling down or anxious, playing this ukulele helps me feel ‘even keel’ again. It allows me to forget about my troubles and visit a different place for a moment, much like reading a good book. Music is life!

I learned two new things.

Our local EZ Pass office no longer exists. Now it is under the umbrella of the Division of Motor Vehicles. In my estimation, the DMV is where happiness goes to die.

I have a new transponder from EZ Pass and I’m responsible for returning the old one. Two choices are available for this task, mail it back ($4.00) or take it to a DMV location that has EZ Pass available. Time vs. money? I decide to spend time taking it to the DMV.

When I walk into the building with no appointment, I do feel lucky that I am the 3rd person in line to check-in. When I left the building, the line had grown to about 20 people. Good timing, I say!

When I got to the person at the check-in desk I expected that I would be able to just drop the transponder in a slot and be on my way. Not so, she gave me a ticket, my good spirit began to waver. I had to sit and wait for my number to be called and many of you know, it can take a long time for that to happen.

Thankfully, I sat in the waiting area for only 2 minutes and hopped up as soon as I heard my number. I handed the transponder to the clerk who typed a few things into the computer and asked if I needed anything else today. No Ma’am! Total time in DMV…10-15 minutes. Not terrible, definitely worth $4.00.

What did I learn? Maybe the DMV doesn’t kill all happiness, maybe.

Simple auto maintenance.

Another thing that I learned is how to change the cabin air filter on my VW Tiguan! The the garage’s price quote is $98.00 to complete that service item. Remember my moment of Zen interrupted by a phone call? This is one of the items that received a big ‘nope’ from me.

I purchased a nice air filter from Amazon, watched a YouTube video, and took 5 minutes on Sunday to change my own air filter. The way I see it, I paid myself $72.00!!

Everyday is a learning day! Some days what you learn is better than others!

Summer break is a wonderful thing for students and teachers alike. We need time to rest, to have less-structured fun, and to find things to do when we get bored. In my last post, I shared the start of my closet cleaning project. One week later the closet is looking good!

Closet Project Completed.

Here’s a photo of my closet in its current state. This is the result of that pile you saw in the previous post! Isn’t it nice?

Now I am able to locate items easily and I feel no stress as I enter my closet. I was also excited that I could vacuum in there with no obstacles! Small joys, right?

Bonus joys from the closet.

Several bonus joys have happened as well. My cat is enjoying the shoe box that no longer holds all of my old photos!

Remember when we used to take our film to a store and wait a few weeks to get the images back on a 4×6 glossy piece of paper? All of those photos are currently organized into an awesome photo box that holds lots of smaller photo boxes. I’m glad I found that 70% discount at Michael’s, otherwise the cat would not be in the box, my pictures would still be in there!!

I love revisiting the past in those old pictures. Remembering old friends, good times and bad times, laughing out loud and feeling a twinge of regret. I realize that I did not know how to be a good friend to some of those people. I hope to do better moving forward.

Another bonus was rediscovering a gift that my mother-in-law gave me many years ago when she returned from Hawaii. It was rolled up in a box for over 20 years and it is about time that I find a frame for this very thoughtful gift. Here is a picture of the framed gift!

Filling Time while Waiting for Appointments

This week seemed to slog along as we waited for my husband, Travis, to see the radiologist at VCU Health on Friday. He did have a midweek appointment with his palliative medicine doctor.

Travis has often expressed his good impression of the palliative care team at St. Francis Hospital. This was my first visit and I completely understand why he sings their praises. That team is able to work through the pharmacy/insurance red-tape, and they work quickly and efficiently. For anyone who is dealing with chronic pain, this is priceless! What impressed me was how the doctor attentively & actively listened to Travis and to me. As an educator, I appreciate that quality immensely.

Taking care of myself.

I did make time this week to enjoy a few things. I love walking in my local park, and I love to sit on my back porch listening to the birds. Early in the day the cats will join me on the porch and we ‘chill out’ together. I even ordered a diffuser of my favorite scent from Ireland. Many of you know that I went on a tour of Ireland last year. While venturing through The Burren national park, we stopped at a visitor center. That is where I purchased my first Irish Whistle and discovered this scent which makes me feel serene. It is called Burren Ash from a company called Gruaig, which is Irish for ‘hair’. I wish you could smell it.

The radiologist appointment.

Friday finally arrived and we made our way to the radiologist appointment at VCU (Virginia Commonwealth University). Though we questioned the reason for this appointment, we left feeling as if it was beneficial in this ever-evolving process.

First, the radiologist gave Travis the choice of treatment in his office or at St. Francis, where we were prepared to begin radiation last week. Travis wants to use the St. Francis team and the VCU radiologist is 100% behind that decision. Next, he showed us the CT scans of the tumor and explained the images.

While I was staring at the monitor, I found myself being equally fascinated and terrified as he scrolled through the images. We were able to see the large shadow that is covering the left pubis bone (Fig 5). I controlled my urge to get my phone to take a video the screen and my urge to cry as I imagined how much pain this must be creating in Travis’ body. We stayed about 30 minutes asking questions, staring at the screen, and expressing our concerns & frustrations. The doctor was magnificent and even helped us with a comfortable laugh near the end of our visit.

What we discovered at the radiologist.

The doctor believes that this tumor has the characteristics of LMS (Leiomyosarcoma) and is hesitant to be definitive on a course of action. While he wants to let the tumor board weigh in first, he did suggest a few more tests. An MRI will give better imagery of the sarcoma and a PET scan will let us know if the sarcoma exists elsewhere in the body.

It is likely the treatment will include radiation and chemotherapy. As for surgery, the placement of the tumor will require and confident and skilled surgeon. It isn’t a consideration right now. He assured us that this is just a lull before treatment really begins and soon it will all move very quickly.

We were eager to hear something by the end of the day Friday from the board of doctors who reviewed Travis’ case; yet no word came, so Monday is when we hope to know more. The radiologist did call at 6:30 PM on a Friday (that was impressive) to let us know he was scheduling a PET scan and that it looked like the orthopedic doctor is scheduling an appointment for Travis. Are you familiar with the phrase “Hurry up and wait!”?

More Joyful Moments.

During the past few weeks, we have experienced an overflow of encouragement, support, love and prayers. Travis has a group of friends who have remained close for 30-40 years now and they gathered this week at our home. They came to listen to Travis, laugh about some old times and pledge their support to the two of us. We learned about everyone’s struggles. It’s good to share them and do our best to help one another.

Many of my longtime friends have also been very encouraging and offering to be here when I need them. I love and appreciate this outpouring of the best part of the human spirit. Peggy and Teri shared real life examples of how rare sarcomas are not the end of life, just an obstacle along the way. I appreciate them reaching out. Thank you, my friends!

While it occasionally feels like there are just two of us experiencing this, each time we enter another doctor’s office we take all of your encouragement, support, love and prayers along with us. We are all in this together. We cannot express in words how grateful we are for those of you who have reached out to us. You bring us Joy!

Moving forward.

Travis has begun his short-term disability leave from work which has been a tremendous relief for both of us. Soon, we will know how to go about getting rid of this sarcoma and life will be all about getting tests and treatments. I pray that the treatments will release Travis from the pain and return him to a good quality of life. I am doing my best to find the joy in this lull before the whirlwind begins.

We also draw strength from the Word of God and the loveliest group of flawed individuals who gather at our church. I leave you with a portion of Psalm 46,

 God is our refuge and strength,
    a help always near in times of great trouble.
² That’s why we won’t be afraid when the world falls apart,
    when the mountains crumble into the center of the sea,
³     when its waters roar and rage,
    when the mountains shake because of its surging waves.

In my last post I mentioned that I was waiting for some books to arrive and they have arrived!! This is the first one I am reading for my own professional development. So far, so good! I’ve only read the introduction and I am excited to keep reading. Some of you know that professional development isn’t always exciting, so for me to say that is certainly something!!

This past school year I challenged myself to change my classroom management plan and I took the book suggestion, that my fabulous media specialist gave me a few years back, called “Responsive Classroom for Music Art PE and Other Special Areas” and I read through it last Summer. I found it to be very helpful for me and for my students because it helped us develop OUR rules for the classroom and we started learning procedures which help things run more smoothly for all involved.

Now this Summer, after reflecting on how I the new management plan worked, I have decided to dive a little deeper into how I speak to my students. I need to work on asking engaging questions and speaking in ways that allow for students to make positive decisions. If you are a teacher of any size, shape, or variety; I highly recommend “The Power of Our Words”. Its only seven chapters and 144 pages long.

Summertime project!

Actually, I believe that this one was more about my own mental health. I got home from church last Sunday and decided that everything had to come out of my closet and this is what my bed looked like when I was finished (and you can’t even see the pile of shoes that no longer live in this house).

Life has been feeling a little out of control lately, so I decided to take control of one thing that has been bothering me for several months. I channeled my inner Marie Kondo and said ‘thank you and goodbye’ to all the items that no longer bring me joy!! (If you don’t know what I’m talking about, start with Marie Kondo’s show “Tidying Up” on Netflix.) One week later, I have returned what remains of my things to my closet with much better organization. Hooray!

Sarcoma battle update

The update on my husband is that we are playing the ‘waiting game’. Waiting for university doctors to look at the biopsy results, waiting to get an appointment for some course of treatment, waiting to see the palliative medicine doctor, waiting for the pain to subside.

He has begun short term disability, which means more time to focus on getting through to the people who can help rid us of this sarcoma. On his last day of work he said that he felt a weight lift off his shoulders. Knowing that he has done good work and left his team in good hands for several months has helped him adjust his focus to this new journey. Everyone at his work has been so positive and encouraging, even the CEO told him that he will beat this no matter what the doctors say! You gotta love that kind of thinking.

We are continuously reminded to think positive, that this will be beaten, that there is hope and the future is bright. Thank you if you have been one of those people and thank you if you are joining me on this journey! We feel your love & support and it is priceless.

Until next time, Cheers!

Setting up this blog has been a learning experience! Maybe it is my age or maybe it is my lack of patience with following directions. I can hear myself telling my students to slow down and read through the directions again. So I finally took my own advice and now I am actually starting my first blog entry. Here we go!

It’s June 11th and the weather is surprisingly lovely. It is 76 degrees at noon and there is a gentle breeze occasionally. I can hear birds, neighbors working in their yards, cars on the busy back road which is on the opposite side of my house from the screened porch where I sit and I can’t forget the sounds of my husband who is working from home today. He is taking a lunch break and is now sitting on the porch with me as he enjoys his freshly prepared pork barbeque sandwich and I must admit that my stomach is now telling me that it is time for me to prepare some lunch as well.

First, let me explain the reason for my blog title. In June of 2023, one year ago, I was in Ireland with my parents and we were on a music tour of Irish guitar manufacturers. Our tour guide, a fine musician named Sean Kearns, was fond of saying at least two things everyday; “We’ll be there in about 5 minutes” and “Everyday is a learning day”. One of those statements was more accurate than the other. The phrase ‘Everyday is a learning day’ is now one of my favorite lines to share during those moments in life when I, or someone around me, experiences something new, like it or not! Here’s a picture of Sean singing and playing for us one evening after supper.

So the reason that I am home enjoying the beauty of this rare June day is because as an elementary public school teacher, I don’t work during the months of June and July.!!! That is, I don’t go into the school building and teach lessons to my students during these months. However, I have ordered several books which I will read and take that knowledge to improve my classroom management. Additionally, I have a 4 day music education conference to attend in the month of July. So, despite not being paid for these two months, I do find ways to keep learning and preparing for the coming school year.

I’m also sad to say that I have started learning about Leiomyosarcoma (Leo-my-oh-sarcoma). While I am not the one dealing with it in my body, it is causing me to suffer as I watch my husband learning to deal with the fact that the searing pain in his hip joint is actually a rare form of cancer. We just got the pathology report yesterday and are still trying to take daily steps in this journey while not getting too far into the future. Knowing with even more certainty that there is a finite number of days and that it just isn’t enough to do many of the things that we were hoping and planning for during our approaching retirement years, I feel a bit dumbfounded and a bit angry all at once. I feel a bit like that Kindergarten student feeling like it is unfair that they didn’t have a turn to play the drum in class. I do my best to remain hopeful that his pain can be reduced so he can get off of the medications that help him survive each day and hopeful that we can find something to be a ‘prize’ for when that day comes. I’m thinking of things like traveling to Germany or Ireland, but I will leave it to him to decide on the prize. I currently have doubts that we will ever be able to say that he is cancer free, but I am asking God for that anyway. In the mean time, I pray for him to be free from this pain.

So there is my first learning day post. I hope you will return and take this journey with me. Feel free to subscribe; though I don’t know why you would find any of this interesting, and feel free to share lovely and constructive comments.

Cheers!!