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!