Sunday Service

Ed and I joined a group of members of our ward tonight to go play music at the developmental center in American Fork. I was thrilled to be able to have the energy to participate! It was nice of Debby to ask us and trust I would be well enough to help out!

It was also fun seeing and hearing from other talented people in the ward! A few of the patients were able to sing along! Other's had more memorable ways of showing their appreciation!

Ed and I sang I've Endured, which was a meaningful song to us after the past very difficult two months. We're hoping the worst is over, and we can start living again soon instead of just enduring!

Shower for Baby Fern

We attended a baby shower this afternoon for my nephew's wife, Jenna. We love her warm and open personality. You can see her in blue behind Barbara. She and Mason are living in Browning, Montana, and will have the baby in December, in the same hospital I was born in, but 65 years later! They are going to call her Fern, which is also my mother's middle name. We are inclined to love her already!

I survived my first day on my Ibrutinib tablet with no adverse side effects.  I'm still a little weak from my last infusion,  but was amazingly able to do everything I wanted to do today.  It felt like I was starting to have a life again!

Children's Concert

We went to a children's concert at BYU this morning presented by the Philharmonic orchestra. It had very clever narration, pictures and ways of directing tree children's attention.  They should do the same thing for adult concerts! We enjoyed it as much as the kids did!

Mabel was transfixed the entire time and Clementine only became disinterested during the talking.

One of the pieces was written by a student, who used the book They All Saw a Cat as the story line of the composition.  It was very cleverly done, and Mabel got to meet the composer.

We look forward to next month's concert by the opera company!

Grandchild Therapy

We had some special time with Mabel and Clementine yesterday.  I was feeling good enough to get down on the floor with them and read a few books!

I also enjoyed watching then make cookies with Brittany!

Brittany let them ice the cookies by themselves, which seemed risky,  but she made sure they we protected with bibs!

Ed and I went out front and helped the girls draw sidewalk pictures, after which I was worn out and took a nap!

We ended the evening with a pajama party! The girls played with the dollhouse, as well as in it. It's held up well for being 30 years old!

When John got home from work we had fun trying to get the perfect action shot of him playing with the kids! I'll bet his arm muscles are sore tonight!

Mom and Barbara Bring lunch

My mom and my sister brought us lunch yesterday. It was so delicious and filling that we didn't need dinner later!  I felt guilty letting my mom wear herself out on my behalf! 

The opportunity to just sit and visit with mom and Barbara was just as happy as lunch!

This morning my WBC went up to 52k and the doctor says it's time to start taking my daily Ibrutinib pill. I'll start tomorrow because I had eaten grapefruit this morning, which is not compatible with the medication. I haven't had grapefruit in a long time, but knowing I can no longer eat it makes me feel very deprived!

Taco Tuesday Turn-around

Today was a good day. I was finally able to sit in a chair for an extended period of time! Ed and I stopped at Taqueria 27 to have lunch after our lab visit. Sadly, they have no specials for Taco Tuesdays,  but the food was delicious nonetheless. My WBC came in at 41.9k, down from 42k. We were disappointed it didn't continue to go down, but happy it didn't go up.

I'm still feeling a little shaky, but was able to write out bills and make dinner tonight (while seated on a chair), so I felt very encouraged.

We picked up my Ibrutinib at the pharmacy. We're not sure when I'll start taking it, but when I do it will probably be daily for the rest of my life. It is a very targeted drug that has only been on the market for about 4 years. I hope my body tolerates it. Each pill costs about the same as an Apple watch. Imagine swallowing one of those every morning with breakfast!

Sunday Crossword

I'm happy to report that together Ed and I were able to finish the NY Times Sunday Crossword yesterday (with no mistakes!). That was the high point of our day.  I was able to sit through a half hour of church in the morning before dizziness overcame me. I feel comfortable as long as I'm laying down. On another hopeful note,  I was also able to watch tv instead of just sleep all day.  I'm really enjoying season 6  of Call the Midwife. I have labs tomorrow. If I'm not feeling better by then we'll see if there is something else they can give me to help get me back on my feet.

Bendamustine Blues

It turns out the strongest side effects from Bendamustine treatments occur 3-5 days after the infusion. I was unable to even get out of bed yesterday! The best way to alleviate the discomfort was some cuddling from Mabel and Clementine, who watched a little Planet Earth with me. Then, they all went with Ed for an outing to Cascade Springs. Coda stayed to protect me during my nap. Here's hoping I can get vertical today!

P.S. My WBC was 42k yesterday! It made me cry to be so close to normal (4-10k)!

Fall foliage

Ed took me for a ride up American Fork Canyon yesterday to see the fall colors. It was beautiful, but also exhausting. The side effects of my treatment make me shaky and tired. I'm pretty good with sitting, but best with laying down. I enjoyed a long nap when we got home!

Hiking Ladies Lunch

After labs yesterday morning Ed dropped me off at the Blue Lemon for a birthday lunch with the hiking group. I hope to be able to hike with them in a few weeks. But for yesterday I was only just strong enough to sit in a chair and enjoy lunch.  It was a very fun luncheon. 

Ed and I were very encouraged by my lab results of WBC at 66k. To celebrate I went home and took a long nap after lunch.

Book Club The Other Einstein

On the way home from the hospital yesterday I stopped off at book club, which my neighbor Maureen was hosting. I was 45 minutes late, but really enjoyed talking about the book, The Other Einstein, which was historical fiction based on Einstein's first wife. 

The infusion went fine in the morning. I had more Bendamustine and 100 mg of Rituximab. We were especially happy with my labs, as my WBC went down to 87.94. Double digits! 

These 7 a.m. appointments are exhausting! We're glad my labs are at 10 today!

Treatment 4

After a relaxing weekend in which I was even able to attend church yesterday, it was back to the infusion center today.  I was happy because they gave me a bed rather than a chair! I had my second infusion of bendamustine and my fourth infusion of rituximab.  They had to abort the rituximab after only 80 mg. (They had scheduled 100 mg.) I developed a fever and chills, so they stopped the infusion before it got worse. They were planning on giving me 700 mg tomorrow, but decided to just give me another 100. I'm both relieved and sad. Relieved to not have to get the larger dose and sad that my body does not tolerate a very important drug.

On a happy note, I had my first visit from Beijo, the therapy dog. He was a sweet Portuguese water dog! Black and white like Coda, but much less excitable!

Nature Day with the Grandkids

Mabel and Clementine came over yesterday and immediately went on an acorn hunt in our yard!

It is amazing how many acorns our little scrub oak trees can put out! And it amazing how entertaining it was for the girls!

Clementine will do anything Mabel does, and it has been fun watching them become friends and start playing together!

We had a relaxing picnic lunch at the Bowery in Lambert Park.

Then we went for a short nature hike up the rodeo road.

We had Mabel find leaves of six different trees and match them up. She did a very good job of it!

After she glued the leaves on, we rewarded her with our I Love Trees button from the Alpine Nature Center.

We taught her how to play Guess Who in the afternoon. She is on the cusp of understanding it. We're hoping that by teaching her games we like she'll never ask us to play Candyland with her!

During Clementine's nap we gave Mabel a popsicle (against her mother's advice). It was a mess, and she had to wash her clothes and have a bath with soap to get the red out!

During all this Brittany was making us dinner of kale, lentils and butternut squash. It was delicious, and very healthy!

To balance it out she also made pineapple upside down cake for dessert. That made everyone happy!

It was just like old times! We loved all the cuddles and entertainment!

Retiring Life

Ed and I went to see Crazy Rich Asians with Barbara and Kent yesterday afternoon. We decided to do it in style and go to the VIP theater in the District. The chairs not only reclined and were heated, but the staff brought us blankets! It was super comfortable and I was able to stay awake for the whole crazy show!

We had lunch at Cubby's which didn't fill me up, so we also ate a tub of popocorn afterwards at the theater. We were celebrating my labs from the morning. My WBC has been stable at 106 for the past few days, so the doctor gave me three days off! We don't have to go to Huntsman till Monday! The dizziness and weakness still hasn't worn off, and I am not really looking forward to another round of treatment next week!

Bathrooms and Bills

It's been a while since I did anything productive around the house,  so yesterday I mustered up the strength to clean the bathrooms. It felt good to help out while Ed was outside mowing the lawn.

Afterwards Ed opened the mail--a stack of EOBs from the insurance company.  It's hard negotiating all the paperwork when you are in a weakened condition! I'm lucky to have Ed by my side!

Kaylene Visit

Kaylee dropped in all the way from Maryland yesterday to help me through the second half of my rituximab treatment. It was fun catching up and helpful to be distracted during the infusion!

The doctor only had them give me 100 mg, and started at a slower pace and ramped up slowly. For the first time I didn't have a reaction. I have to go for blood tests every day now, but get a break till my next treatment on Monday!

Infusion Center

Brittany stopped by to join Ed and me for lunch at the infusion center yesterday.  She had a museum conference only a few blocks from the hospital. It was nice to see her during the hour I felt good!

The treatment again caused me fevers and leg pain. After stopping and restarting the treatment twice yesterday, but not being able to keep the fever in check,  the nurse finally gave up and sent us home. I only got 100 mgs of a 800 mg dose. We have to go back today and try again. Many people can tolerate the treatment in 2-4 hours with no problem.  Why am I so special?

Happy Birthday, Mom!

My mom turned 90 yesterday, and we had a party at her house to celebrate! It was so fun meeting her friends from church as well as seeing relatives we don't see very often!

I spent most of the time sitting on the couch,  but mom was on her feet greeting guests all evening! I think she's going to be super tired today!

It was also an opportunity to show off the beautiful remodel of mom's home.  She's starting a new decade with a brand new interior, complete with new furniture.  She got an Amazon echo for her birthday, and as she always does, she embraces change and moves bravely to the future! We love her!

Literary Sojourn 2018

We started bright and early this morning with a hike up the mountain behind our condo. Renee and I peeled off after a mile, but Suzanne and Susan went almost 4 miles straight uphill and back!

Afterward we got gussied up and went down to the Strings auditorium for Literary Sojourn! We heard 5 authors talk, and they all had something interesting to say. And I didn't fall asleep once!

We enjoyed high tea with gravlax sandwiches on the under a big tent in the fresh air!

When we got home I introduced Kay and Renee to the joys of writing their book reviews on the blog.

Nora and Suzanne complained a little, but also eventually finished their reviews. If you want to see some good book suggestions, check out 

http://www.highlandbookies.com/literary-sojourn-2015-2-2-2/!