Friday, July 6, 2018

Family Time

(And what I'm learning on this journey)

We had the best visit recently when Jon, Natalie and the girls flew in from California and we had all the family together for four glorious days! And this Nina got to hold baby Eisley to her heart's content 💕 She's so tiny and adorable and precious! All my grandchildren are adorable and precious, but I'd never had the privilege of holding one so tiny because we were overseas when all the others were born. Eisley was 7 weeks old while they were here and I just soaked up all that baby goodness! She and I became great buddies, and as my cousin predicted, she'll be my "partner in mischief" in years to come.

I did, on occasion, allow others to hold her, especially Papa who is as smitten with her as I am.

We didn't have an agenda except to hang out and enjoy one another. Lots of pool time in the mornings when one end of the pool was shaded. One morning was spent visiting the very cool children's museum and the container park. Lots of good food was shared, we had a fun evening with the cousins, and we just enjoyed watching the kids play together. We weren't sure how well they'd do, since 2, 3 and 4 year olds are not known for sharing or playing well together, but overall they did great! Betsy was fascinated by "Baby Eisley" as she called her, and Tina took so many great photos during the visit, including this one of Betsy helping Papa feed her. Betsy loves her baby dolls, and having a live one was a dream come true.

Betsy also really enjoyed having another girl to do girly things with, like put on pretend "meekup".

Simon and Adalyn had a different dynamic, much more active and at times frenetic, like when they started twirling around and around. I'm not sure how many pictures Tina had to take to get this one. They were perpetual motion!

I got a big kick out of Simon, who on day two of the visit arrived at our door with his face shining with joy and said, "Nina! You know my friends who were here yesterday? They are here today too!"

Their arrival on a Sunday worked out great to get together that evening with the cousins. Simon was so happy to see "Aunt" Kathy. Since they spent over a month with Paul and Kathy when they first arrived in Vegas, the kids got to know and love them like the rest of us do, but Simon especially became quite attached to his special buddy. He absolutely loved helping Kathy with chores; give the boy a job and he's in heaven!

It was so sweet to see Lizzie and Willys together too. Aren't they the cutest?!

Our sister-in-law was in North Carolina with family so we didn't get to see her that evening. Ivan will be seeing the whole clan again this Sunday when they gather to celebrate a milestone birthday for Lizzie but I'll miss that, seeing as how I just had chemo and I know from experience I won't feel like going anywhere or doing anything. I have to say, it's been a HUGE blessing having other family here who know the ropes, where to find things, how to go about getting things done...

But back to the visit.

I was dealing with some chemo side effects that prevented me from doing the museum and park on their last day, but I received photos throughout the morning so I didn't feel left out. This has to be one of the best children's museum in the country! The kids could pretend to work on cars...

...go shopping, and so much else. They have costumes and a stage, a "water" room, so many hands-on activities!

Then they stopped for a bit at the container park where the kids could play with these enormous blocks (among other things). Didn't stay too long, though, because it was HOT that day. We've been experiencing temps above 100 consistently, and that day I think it got up to 108.

Then it was back to our place for the final few hours of their visit. After lunch the kids were running around and playing and, at one point, all piled into our bed to pretend to sleep. Haha! That wasn't going to happen! They were way too wound up!

Occasionally one of the kids would find their way to me (always holding the baby!) to admire Eisley and elicit one of her breathtakingly beautiful smiles.

Papa got his share of attention too. All our grands absolutely adore their Papa!

Tina had Ivan use her camera to get this shot of her and Jon with their two youngest. I'm so grateful for her making it a priority to get lots of pictures! This is just a handful, and I keep going back and looking at all the photos and reliving the memories we made.

Two of my favorite pictures are these last two: us with all the grands, and just the grands.

Can I just say: Too precious for words!!!

Health Updates:

I've been absent from the blog this past month because chemo has been kicking my bum. Along with the extreme fatigue, chronic diarrhea, mouth infection, constantly watering eyes, change in taste buds, interrupted sleep patterns, and those occasions where I'm just shaky all day... the infamous Taxotere rash just won't leave me alone. Even though they lowered my Taxotere by 25% on round three of chemo, I had the rash not once, but twice! As a preventative measure they'd prescribed a six-day steroid pack, so I was prepared when the rash popped up on my hands again and I immediately started taking the meds. It stopped it from progressing but, even so, my hands are now at the peeling stage. And on the day I took the last dose from that pack, the rash began appearing on my arms, legs and knees and bottom of my feet 😢 I called the doctor's office and they called in another prescription for a six-day steroid pack. I was on steroids almost the entire three weeks between round 3 and 4. *sigh*

I had my fourth chemo treatment July 3rd, and Dr. Parikh tweaked a number of things, as he's trying to address not only the rash, but the chronic diarrhea. He lowered both the Taxotere and Carboplatin, removed the anti-nausea meds I'd been getting intravenously during treatment, and also the Neulasta patch, which boosts your white blood cell count to reduce infection risk. I'll be getting blood work done weekly now, so they can monitor that white blood cell count in particular and make sure it doesn't get too out of whack and prevent me from staying on track with the chemo schedule.

Normally things go sideways 3-4 days after treatment. Last night I was up and down coughing a lot, and some intestinal discomfort, but nothing like it's been the last three times, so I'm hopeful the tweaks are working. But we'll have to see how the next few days go before we can say for sure. I've been dealing with more nausea since he removed the anti-nausea piece from treatment, but I'd personally rather have nausea than diarrhea, so I'm okay with that.

As for Ivan, things are proceeding but slowly. He met with a primary care physician last month who we both really like. He gave him a thorough examination and took time to talk through a number of issues Ivan's been having, and ordered several tests. And then things kind of ground to a halt. The order for the CT scan was approved, which Ivan has to have every six months for two years to follow-up on the cancer he had removed last year. But the scheduler in the doctor's office totally dropped the ball on the other things: endoscopy/colonoscopy (yep, he's going to get them both done in one shot), and hernia repair.

A big problem we're encountering is -- shocker! -- due to our insurance. Ambetter is new in Nevada and while a lot of doctor's signed on initially, they quickly dropped out when Ambetter was less than accommodating on approvals, payments, etc. So finding specialists who will accept the insurance has been like finding a needle in a haystack. Ivan played phone tag with the schedule for 10 days, with us finally looking up who was in network, and then never hearing back from her.

Ivan had a follow-up appointment yesterday afternoon to go over his CT scan. Almost did the happy dance right there in the doctor's office when we heard there's still no sign of any cancer! But the scan showed he has two inguinal hernias, not just one. The doctor was pretty disgusted to hear the scheduler hadn't followed through on getting those other things lined up, so today Ivan will be calling a scheduler in a different office (this practice has several locations around the city) who the doctor says will get things handled. Sure hope so!

Ivan's been having some pretty severe back pain recently. This has been an ongoing problem throughout the years, and periodically it flares up. The doctor printed out some exercises for him to try, told him to keep doing his nightly cardio on the treadmill, and use the pool as often as he can. His sedentary job does not help. I'm really proud of him for starting an exercise regime recently and sticking to it faithfully!


2018 has sure turned out to be a year of big changes. The move out west has been good, but we could have done without all the health issues. Or maybe not. Still not sure of all God is trying to teach us through this, but glimmers of His plan shine through on occasion. In my devotional this morning, it says: "You tend to feel guilty about pushing back the boundaries of your life to make space for time alone with me. The world is waiting to squeeze you into its mold and to crowd out time devoted to Me. The ways of the world have also warped your conscience, which punishes you for doing the very thing that pleases Me most: seeking My Face." When God brings you to a screeching halt physically, you suddenly find that time.

Last fall when I began counseling one-on-one with my spiritual director, she asked me what I felt God was saying to me. The first word that popped into my head was "Rest". I was so tired, but had no time to stop or even slow down. The remainder of 2017 went by in a blur of one family crisis after another. It's no wonder I got so sick at the very end of the year; I was exhausted on every level. But getting so sick also led to the cancer diagnosis that, otherwise, might have taken much longer and proven much more serious. (Not to say this isn't serious, but stage three is better than stage four!) I'm certainly getting that rest's all I can do.

Over the past few years I've been learning (and re-learning) that what God wants most of me is not what I can do, but who I can be. He wants me to focus on being His beloved child, not on rushing about "doing" all the time. Yes, we are called to "do" His will, but I think as believers we too often get caught up in the doing, and miss out on simply being in His presence. Finding balance seems to be a big message He's sending me. I've spent my whole life caring for others, in what I might call "maternal mode", but too often to the detriment of my relationship with Him. After all, He doesn't need mothering! It's a radical shift to go from that "maternal mode" to "child mode" where we can rest in His presence, in His plans for us, and simply trust.


The Bug said...

First - your grandchildren are adorable. They just are. So cute!

Second - so sorry your side effects have been so bad - and that Ivan is having trouble getting taken care of. I'm afraid that's the way medical care is just going to be these days. On both fronts - the "science" of cures seems more like "let's just try something for a while & see what happens."

Third - you're such a wise woman, with such a good spirit. I predict great things on the other side of this trial!

Mari said...

I love the pics - especially that last one of the kids. They are adorable and I think holding a baby is the best medicine! Simon's comment about his friends is so cute!
I'm sorry you've been having such bad side effects, but I sure appreciate your wisdom in the middle of it.

Skoots1moM said...

Love you, JubiSista! Prayers continue for y’all; so glad to see your great pictures
He’s got you under His wing, in His palm, wrapped in His Spirit ...resting is a season to love on Him, in Him... while He loves on you through His other kids :)

rita said...

So grateful for your monthly and lengthy updates, and with focus on the positive in the midst of much that is regarded by most as negtive and depressing. According to our sermon today, yours is a posture of praise. To such God promises to strengthen their soul, His presence throughout, and even more--to accomplish His purpose through it all!
We had two of our workers share today--wonderful stories of God at Work in their corner of the world. In conversation after, they mentioned the book Emotionally Healthy Spirituality by Peter Scassero. Have you read it? I just ordered it.