Thursday Report, What's next.

Quick update:  Continue chemo & immunotherapy for 3 more cycles (chemo, chemo, skip).  Then probably targeted radiation, then immunotherapy for a year (every 21 days).  

 Thursday was a busy day!  Scott was out of town for work meetings, so my close friend Erin picked me up at 8:00, then dropped me off at my next stop at 3:15 (my first ride on the Front Runner).  

My lab appointment was at 8:30.  They can only access veins in my right arm because of my lymphedema in my left arm.  I didn't want a port, because I hated having one last time--it felt weird and is the only noticeable scar from round 1 of breast cancer 13 years ago.  I went along without one in case things didn't work; but since we are looking at over a year of vein usage, I'm giving in and getting a port in early June.  

Next was my doctor's appointment. I love my oncologist, Sandra Buys.  She is smart, compassionate, takes as much time as needed to answer questions and discuss options.  She was thrilled with the progress.  As my tumors have shrunk, I've been gaining water weight, with swelling in both legs, but more so in my right ankle,--the one I broke 5 years ago.  So, I'm now wearing compression on every limb but the right arm, which has worn out veins! She gave me a couple meds to help with that.  As noted in the spoiler alert at the beginning, we will continue with 3 more cycles of chemo, then most likely switch over to radiation, while continuing the immunotherapy for another year.  So we are hopeful in winning this battle!

After my Dr. visit, we went to the infusion area.  It was so fun having 4-5 hours catching up on things while we sewed sequins (now 26 friends have helped!) during my infusion. Erin's been one of my closest friends for 38 years.  We've lived in the same place or in close proximity 7 different times, maybe more.  She is a great cook, and I've learned so many culinary things by spending time in her kitchens.  I learned how to make cinnamon knot rolls from her probably 37 years ago.  We make caramel candy every December. She feeds huge crowds amazing meals, and never seems flustered.  She fills people with food, but she also fills spirits with her faith and goodness.  She is a treasured friend. 

Sewing sequins.

After my infusion, Erin dropped me off at the train station.  Thanks to help from my next door neighbors Tina and Mia, I took my first ride on the Front Runner, a train that connects between Provo and Ogden, maybe further.  It was really easy to do, and a fast way to miss heavy traffic.  I traveled down to the South Jordan stop, where Tina picked me up, because she was coming back from Provo.  We were both attending a dinner with Utah Academic Language Therapists who I have either recruited and/or helped train.  I think we had 14 people around the table, and letters from 3 others who couldn't attend.  It was so kind of Lisa and Connie to put this together and to comment on the ripple effect it has had as each of these Certified Academic Language Therapists (CALTs) are now helping lots of dyslexic kids.  It was a beautiful night, and I totally forgot to take a photo!  

Shrinking!!

 I just read through yesterday's MRI results in My Chart.  My oncologist will explain more at my appointment tomorrow, but the mass encasing my left brachial plexus was 5.6x4.0x5.7 cm and is now 4.2x1.7x5.0 cm and the mass in my arm was 1.6 cm and is now .8 cm, so I am thrilled with this news.  It is great to hear that my tumors and my body are responding well to our current treatment plan.  I assume we will continue with what is working.  Thank you for the prayers.  They are felt and are very appreciated.  I'll add more tomorrow, if there is anything else to add.  I feel so relieved that things are going in the direction we are hoping for!  

Beads & Sequins of Love

The quick medical update: Tuesday, 5 p.m., MRI scan. Thursday, chemo and immunotherapy. I’m feeling good, have decent energy, no nerve pain, and I’m sleeping well without meds.  My friend Heather invented the perfect word, "scanxiety."

 I’ve had several friends ask how they can help. For now, I’m able to cook, shop, do laundry, and keep up with normal things. I’m still teaching my 5 students. The effects of chemo, besides baldness, losing eye lashes, and starting to lose eye brows, are: I move slower, have swelling in my left ankle (where I broke my ankle 5 years ago) and right arm (where I’ve had lymphedema), and my fine motor skills are impaired.  Not bad, I prefer all of the above over nausea and diarrhea.  My body is tolerating things well.  I'm very thankful for this.  

 The one general area of “need” or “want” is that I want to make sure I have Christmas stockings ready for my two grandchildren arriving this year, and potentially 4 additional grandchildren that we hope will join our family at some point in the future. These are handmade stockings that all feature a Santa, with additional details, all covered with sequins and beads. They are a Tenney tradition, and each one takes hours of work.

Our beach living/loving family added a tropical twist to their stockings.

This close up look, showing each single sequin and bead.

Friends have come to the rescue. So far, 25 different friends have taken part in this sequin and beading project. I have felt so much love from each sequin and bead stitched. It will mean a lot to my grandchildren when they are older and hear about all of the hands that helped to create their stockings while “Taffy” (my grandma name) was fighting cancer. Thank you for all of the loving sequins and beads!

Another wonderful service has been provided by my kids, and several friends. Every chemo day, they have surprised me with short videos shared by siblings, family, and friends, sharing fun memories we made together. It has been so much fun, and a great distraction during chemo. Thank you so much for everyone who has shared a memory. If anyone would like to send my girls a video for a future chemo day surprise, this is the link you can share it to:  https://forms.gle/4riu2NUAkxAJGBJM6, or FB message Courtney Page or Kirsten Bush.

I’ll update this as soon as we hear back on the scan. We should hear back by end of day Wednesday.

When Hard Becomes Holy

The quick update, I've now had 5 infusions. My left hand is regaining strength and flexibility. My nerve pain is gone. I feel way more energetic than I expected to feel at this point of treatment. My body is tolerating both the chemo and immunotherapy well. When Scott asked the doctor what best case scenario is, she said, "Shrink the tumors enough for targeted radiation, radiation completely eradicates the tumors, then continue immunotherapy for a year, with continued monitoring." It was the first time anyone had mentioned even the possibility of complete eradication, and she was careful to temper our expectations, saying it wasn't a likely outcome, but it gave us some needed hope.

Easter weekend was beautiful.  Good Friday was a skip Friday!   This gave me more time to focus on and appreciate Jesus’s suffering and sacrifice for each of us, individually.  He knows what it is like to experience every feeling and experience we have in life.  I recently read an address by Camille Johnson, president of the Relief Society of our church.  She talked about hard things that come in life.  She said something like, “You can do hard alone, and it is just hard.  But when you do hard with Jesus, hard becomes holy.”  I loved that thought.  I love going through life’s adventures with Jesus by my side.  I feel honored to be the recipient of so many daily prayers in my behalf.  I want all of you to know that your prayers are felt.  I feel stronger than I should, and I’m able to do more right now than I should, and it is the blessings from your prayers.  These are making my experience holy.  In my personal prayers, I’m praying that everyone praying for me will feel God stronger in their lives, that they will experience some of the same holiness that I’m feeling.  I’m so thankful for all of you that have joined my journey.  You are blessing my life, adding joy, and increasing my capacity.  Thank you.

This past couple of weeks have brought a lot of joy.  I met up with the girls in our family at Heath and Elizabeth’s home near New Haven, CT.  We had a fun girls plus Heath weekend. 



We met up with a good friend from high school, Sharon, who I had not seen in person since my wedding reception. 


We enjoyed a morning walk along the beach.  Friday night, as we prepared to leave for dinner, everyone kept coming out wearing something sparkly.  Courtney had secretly packed some sparkly pants from my closet for me to wear.  Then they pulled out colorful wigs.  It was a really fun early birthday celebration.  Saturday morning, we had a baby shower for Elizabeth’s baby girl, due in July.  We also spent time sequinning Santas for Christmas stockings for grandkids coming in the future.  

Tuesday, April 14th, was chemo day number 5 (because I was out of town for my regular Friday infusion.  It was birthday chemo, and when Scott and I walked into Zupa’s, I was surprised by my birthday buddy Cristy, who flew in from Mississippi, Jenny, who flew in from Atlanta, and Krista, who now lives in Utah County.  We all served together about 25 years ago.  Later, my older sister and brother in law, Laurie and Chuck, came in town and celebrated with us over night.    That night, I was serenaded by lots of my favorite neighborhood kids and their parents, over 40 people!  It was the best chemo day ever, and definitely one of the best birthdays too!  

This Tuesday will be my 6th infusion.  They will do scans after to see how much things have shrunk.  I’ve been doing infusions through my veins so far, because I didn’t like having a port last time.  But, if the tumors are shrinking, I’ll go ahead and get a port, because they have to poke me multiple times to find a good vein.  I didn’t want to commit to a port until I knew it was needed.  

Holy Week

I’ve had 2 Friday infusions since my last post. I’m tolerating both drugs well, Trodelvy, and now  Keytruda, my immunotherapy drug.  Keytruda is given every 21 days.  My energy levels are better than I’d expected.  They will do more scans after my 3rd sequence, so late April we will know how the tumors have shrunken. I know that good things are happening because my left arm's range of motion is greatly improved. My nerve pain is gone, and I'm sleeping well.

Both infusion days included a special guest!  Kirsten and 6 month old Kira came for a week of fun smiles and army crawls.  Kira spent an afternoon with her other grandma, Lisa. and her Aunt McKenna, allowing Kirsten to come with Scott and me. 

The next Friday, Heath was in town and came along with us.  Kirsten and Heath overlapped a few days, which was extra fun for me, and extra productive on my project list.  My pantry now looks like a model home.  I’m so sad that we didn’t take a before photo, but I love the end result, and I’m determined to keep it in order–a place for everything, and everything in its place, no loose items. 

Organized pantry

Clean & organized fridge

I keep expanding my hair options.   I purchased some human hair wigs off of FB marketplace.  Heath and I definitely made some memories as we gathered them.  A thorough cleaning once we brought them home, and I now have an auburn, brunette, and blonde options.  I also purchased a black baseball hat with hair.  The 2 baseball hats are definite favorites because they are easy to put on and head out the door.  

Lisa Falls, Litle Cottonwood Canyon

One of my colorful compression sleeves

I now have a handicapped parking pass that will not expire.  That’s my plan too!  Last time, I waited too long before getting one.  When I felt like I needed it, my immune system was at risk, masks were not a thing 13 years ago, and I had to wait at the DMV for a long time.  This time, Heath did the leg work for me, while I worked on projects at home.

I’m finding that the Monday after Friday chemo seems to be the hardest day, as far as energy level and fatigue.  Getting out for walks helps so much. My friend, Ellen, is my Monday walking friend. We live in such a beautiful place with easy access to mountain trails.

  

In April, the annual Tenney girls trip (plus host Heath this year) will happen in Connecticut.   

We are going to Yosemite with Garrett’s family in May.  Summer time will be here very soon.  We look forward to our summer visitors.  We have also scheduled a Disney Cruise for 2027.  It is so fun scheduling events to look forward to. 

As we are at the beginning of Holy Week, I love and appreciate what Jesus has done for everyone.  I love knowing that Easter morning reminds us that our loved ones who have passed will rise and be with us again.  https://www.churchofjesuschrist.org/welcome/easter?lang=eng

Wigs and Pinkie Progress

Friday was my skip day from my chemo routine.  I love my skip days!  This week I’m feeling really good.  My energy levels feel normal, which is really encouraging!  In other great news, they found the right medicine for my nerve pain, which is now gone.  My left pinkie has been the physical deformity, sort of curled up, with no control.  You could flick it up, but it would just curl back.  This as due to the tumor squeezing the ulnar nerve.  I now have proof that the chemo is working because I can now straighten my pinky to stand straight. This makes me SO happy!

 

Things are going really well, besides my hair falling out ahead of schedule.  I had St. Patrick's day down as the expected hair loss day, but Friday morning it was coming out by the brush full, with every stroke, lots if hair covered the brush.  Last time this was the hardest part.  This time, probably from all of the prayers, it was fine.  I have more things to worry about besides hair.  Scott used our hair clippers and used a number 6 guard and gave me a nice buzz cut.  I called my friend Cheryl, from our Manhattan Beach days, who now lives in our neighborhood.   She went through all of this a year or two ago, and offered to help in any way.  She told me, “I’m your girl”.  So very last minute, she took me to her wig place and helped me, gathering a variety of wigs to try on,  I found one that looked close enough to my regular look.  I wanted to be recognizable to my grandkids and students.  I may try some more exotic looks just for fun later, but for now, this one felt just right.   Cheryl and Scott were my heroes that day. 

My baseball hat hair that I saved from last time. 

I’ve been living as if I have 6 months.  We finally met up with Scott’s childhood friend, Kenneth and his wife, Edee.  I've lined up different friends to walk with every day, which as been so good for my soul, body, and heart. Courtney came in for a few days for a former roommate’s wedding.  Kirsten and Kira come in tomorrow for a week.  Heath comes on Saturday for a week, with some overlap with Kirsten.  Garrett really wanted to come earlier this week, but I asked him to come later so I had something to look forward to in later months.  My kids are so great.  It is hard to know that they and Scott are so worried about me.  I’m blessed to be so loved.  

Recently, the teenagers from church (about 40!)  surprised us and sang a song for us.  Then they had each written a note card for me.  I invited them in, so they could all slide for a few minutes.  It was such a nice visit and it made me feel of their love and prayers.  

 

Today, I met up with 3 dear friends that I worked with in the BYU Records office, after my graduation.  It had been 40 years since I’d seen 2 of them!  It was so much fun!

The BYU Records Office crew

This Friday, they will add in the immunotherapy drug.  That added part gives me great hope.  I’m so encouraged by the progress I’m already experiencing.  I really feel the sustaining power from everyone’s prayers.  They give me strength beyond my own abilities.  I’m so thankful for Jesus and his gifts to all of us.  As Easter approaches, I have deep gratitude in knowing because of Jesus, we will see and be with our departed loved ones again.  I strongly believe that our loved ones will be the ones who greet us when we pass, and that they are the angels watching over us as we go through life.  These thoughts bring me great joy!

Miracles

 I had chemo on Friday.  My kids worked with friends and surprised me with balloons, Crumbl cookies, and tulips (thank you Utah elves for carrying out their surprise--Hoosier friends forever). Scott & I had Red Iguana for our date night meal.

Yes, I'm lactose intollerant, and yes, I enjoyed the cheese!

Saturday night and Sunday were the times that many friends and family were praying and fasting for my family.  Sunday was a beautiful day.  I’m not sure how it all works, but I definitely felt the prayers powerfully.  I’ve been in control of my emotions and able to speak to others about my situation with complete composure.  I feel empowered and know that God is gifting me with this ability due to your prayers and fasts.  It is a miracle, and my heart is full of appreciation for the privilege of feeling heaven surrounding us. I know that Scott has also felt strength through your prayers.  

My chemo drug is called Trodelvy.  According to nurses, it is less harsh on side affects than the drugs used for my treatment 13 years ago (Adriamycin Cytoxan, and then Taxol).   They include some anti nausea drugs and a steroid with my chemo, so I didn’t need to add any other meds until Monday, when my body was on its own.  So far, I’ve felt pretty close to normal.  I’ve lined up friends to walk with each day, which has been a blessing both for my physical and mental health.  

This Friday, they will add in an immunotherapy drug called Keytruda. I’ll have chemo Friday, Friday, skip, Friday, Friday, skip, …..for as long as we are getting desired results.  Then they’ll look at other options.  Since this is considered a terminal diagnosis, the goal is to find the right balance of QTWST, quality time without symptoms or toxicity.  If I have any trips that interfere with treatments, I can skip for a few days and then start up again as soon as I return.  We are hopeful to buy years, not months. 

We are living as if we have months–meeting up with friends that we have meant to gather with for years.  It is a sweet way to live that I recommend to everyone.  

This is a favorite song the children at church sing. I love my Savior and am so thankful for Him and the peace he gives me. https://www.youtube.com/watch?v=zZ2djzQ9J64