Thursday, July 12, 2018

A Small Life

I was talking to my sister yesterday and mentioned I felt my life had become very small. I'm glad it's only for a season that the walls in my (small) apartment encompass 99% of my life. I'd probably go crazy if I thought this was a situation that went on indefinitely. So I'm focusing on getting through the next two months, after which chemo will end, and life will go back to "normal". Until surgery that is...and then radiation. Pretty sure recovering from surgery will involve more of this small life as I heal from a bilateral mastectomy. I've heard radiation can be exhausting (and painful) but with both surgery and radiation, I should have far fewer side effects that I'm struggling with now.

I might be having fewer side effects even sooner. Despite the tweaks this last time, I was still slammed with chronic diarrhea and the Taxotere rash. Because of that, it's highly likely that my oncologist will eliminate Taxotere from my regime entirely. Since Taxotere is responsible for the majority of my side effects (we think), the final two rounds of chemo might be much more manageable. I'm on board with that!

From what I understand, the oncologist will be making a decision about the Taxotere based on two things: the way my body has been reacting to it (badly), and the results of the PET scan I'll be having next Monday. Praying the scan shows the chemo has been effective in minimizing both the cancer activity and area!

We were pretty shocked that the PET scan was approved...and so quickly! Definitely a first with this insurance company. What's funny is that such an expensive procedure was approved in less than a week, while approval for a simple prescription drug to help with the chronic diarrhea took 10 days. Go figure.  I'll be going in tomorrow for that injection.

I've pretty much lived in my pajamas for a week (not the same ones. ha!), only getting dressed to go for blood work the other day and when Tina and the grands came over for supper last night. Tina and Kyle are doing the Whole 30 this month so she made supper: a yummy zoodle dish with chicken sausage and a red sauce. We also had a delicious caprese salad made with heirloom tomatoes, basil Ivan's growing on our tiny patio, and goat cheese (well, Tina didn't get the goat cheese because no dairy on the Whole 30). I'm doing very little cooking these days, so that meal was a real treat!

I've heard a lot about Whole 30 but I'm pretty sure I could not live without cheese for a month. I've had an internal debate about which would be harder to give up: chocolate or cheese, and although they run neck and neck, I think I'd give up chocolate before I gave up cheese. So glad I don't have to give up either!

Back in March I wrote about grieving all the small losses, and that still holds true. I'd like to say I've risen above that, but the truth is I haven't and probably won't. And I'm okay with that, because hey!, I'm human. Right now I'm feeling a little blue about what I consider my small life: being limited in what I can eat (my body doesn't seem to like a lot of things these days), or do (because of side effects and serious lack of energy), and spending 99% of my time in a small apartment. But that's offset by the fact that I really love my small apartment. Ivan and Tina have helped me make it a home, and for the first time in years we have art on our walls. And while it's small, it's the perfect size for us right now.

Our art is very personal. We decided years ago to collect art prints whenever we traveled. Prints weigh practically nothing and can be packed flat in a suitcase. And early on we decided we'd focus on what I'd call architectural art, because we both really love that kind of thing. So we have prints of buildings and structures from Uruguay, Ireland, Argentina, and various places here in the U.S. We just bought cheap white frames from IKEA and Walmart, so although they're different sizes and styles, somehow they work together. I did notice after we'd put them up, they all have a little red in them; in some it's a bright red, others more muted, but I think that helps too. Each print carries with it a memory of a place and time, a story...part of our story.

I can sit on my couch and see our only original oil paintings directly opposite, all by a dear friend, Juan Colle, who was an artist and pastor in Argentina. He died the year after we moved to Argentina and we still feel his loss. I'm so grateful we have these paintings. They remind us not only of him and his family, but also our life in Argentina.  Two of the paintings are of the Plaza San Martin in Córdoba capital, one in summer and one in late fall/winter...a place we walked through numerous times over the years. Another is the lane going to the camp Ivan attended every year growing up, and visited a few times while we lived in Argentina. And finally, a church in the province of Córdoba, that we gave to friends many years ago and they just re-gifted back to us to fill the blank spot on our wall. It goes so perfectly with the others!

Also from my couch, if I look left to the built-in shelves, I can enjoy the original acrylic painting done by our precious friend, Magdalena, who used a photo we'd taken of the river by our house to create a landscape that never ceases to cause my heart to constrict just a little.

Hanging beside is a metal sign we had commissioned for our little casita. We met the sign maker at the big artisan feria in Córdoba our very first year in Argentina, and loved his work so much we ended up buying signs to give as gifts to a lot of our family and friends back in the states. His style is very traditional Argentine. Before we returned to the states we bought another one: "Buen Provecho" ("may it profit you", meaning the meal) that I knew I wanted to hang in our dining area. Below it we put one of the few non-architectural art prints we have, of a man drinking máte because that seemed to fit the space so well.

Across from that is a print that Ivan's mom owned for many years, and I told her I wanted it when she was done with it. That happened when she moved into medical care after breaking her hip. I think she likes knowing it's well loved and used by someone in the family. Betsy calls it "the food picture".

Although I love all our art, my favorite wall is the one in our bedroom where Tina helped me create a whole gallery of family photos. I have space for one more frame in the upper left corner. My plan is to have large prints of Jon's family, Tina's family, the grands all together, along with the canvas print from the family photo shoot the kids gifted us in 2016, and then 8x10s of the grands. I'd like to always keep one of their baby pictures on display (there's an empty one waiting for Eisley's picture), along with a current one.

Still to be hung are three original pen and inks, which I plan to put over the bed... but not until we finish making a fabric headboard (partially done) and get that in place. Once those are up, I'll be sure to take a photo of that wall. Two of the pictures are by a friend we've known for many years. The other is by the brother of another friend, and has a funny story to go with it (but I'll wait to share that when I share a picture of them hanging above our new headboard). 

So while my life may seem small right now, confined by the walls of my apartment, those same walls bring great joy as I gaze at dear faces, or pictures that bring back precious memories. 

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 now...it'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.

Thursday, June 7, 2018

The Taxotere Rash

(which sounds like a dance move, but it's not)


I can hardly believe it's June already! This year has literally flown by, with so much happening that it's "inconceivable" [name that movie for 10 points!] to find ourselves living in Las Vegas when, on January 1st, the only thing I could think about was trying to breathe after my asthma flared up and bronchitis hit. This will no doubt go down in the annals of Hoyt history as the year Kim got sick and stayed sick for the entirety of 2018.

I find myself telling time in terms of treatments. I suspect a lot of cancer patients do that. I also have a little game going as to who "wins" each week. Last week "defeated" me, as my Ugandan friends would say.

Along with all the other side effects I've gotten each time, a painful, burn-like rash appeared on my hands and face. The hands were the worst, bright red creeping across knuckles and up and down the thumbs. Healing has begun, burned skin peeling and new skin feeling taut, but no longer hurting. My face is splotchy, not too bad except around my eyes, which are still ouchy.

Thankfully I have a proactive oncology team and was able to talk daily with my nurse last week, and we stopped by the office so she and the nurse practitioner could look at the rash. They put me on steroids and an anti viral medicine (covering all their bases?), and I'm using Systane Ultra eye drops. My cousin Ruth told me about Aquaphor, which I'm using on my hands. I guess it has lots of uses, and one of them is soothing burns.

Those who know me, know I immediately jumped into researcher mode and learned all I could about the infamous "Taxotere rash". I read articles by the American Cancer Society, Mayo Clinic, the British NCIH site... I avoided the quack med sites since they have nothing substantive to say. Long story short, it would appear the level of Taxotere given this last time was too toxic for my system. The nurse practitioner agreed we need to lower it next time and see how it goes.

Taxotere has been found to be very effective when used in conjunction with other chemo drugs, to extend life expectancy. With the addition of Taxotere, 72% of women were still living 5 years later, compared to around 60% without it. So it has it's place. But the trick is determining the quantity needed without being too much. Typically they factor the amount based on weight. Since I've had some pretty serious health issues the last few years, leaving my body already compromised before even beginning treatment, that has to be part of the equation as well.

I'm grateful for the wonderful men and women in the oncologist's office who really care about me, the person, and not just me, the patient. One thing we learned while living overseas was that you have to advocate for yourself. I'm thankful I can do that AND have others advocate for me as well.

Ivan is my #1 advocate and one thing he's pushed for all month is to get a case manager so we don't keep getting bounced around with our insurance company. His persistence paid off and we finally have one! It's such a relief, and the person assigned to us seems really kind, plus she's an R.N. I think it will make a huge difference going forward (especially with Ivan's blood pressure!).

On drives to various appointments and tests, we've seen some really funny signs. My favorite was a huge banner across a new condominium complex that read "Amazing Ocean Views" and in smaller letters below: "Just Kidding!" The complex ran along a dry river bed.

Another that made us laugh out loud was a garage sale sign: "Awesome crap you didn't even know you must have!"

What can I say? We take our amusement where we can find it.

Getting more excited as the countdown gets closer to a visit from Jon, Natalie and the girls. Pretty sure we'll have amusement overload with all the grandkids together! They arrive 10 days after my next round of chemo, so praying I'm over the bad part by then and feeling decent. I really want to be able to enjoy snuggling the new baby, and watching the antics of the 2, 3 and 4 year olds!

I'm also hoping it isn't quite this hot when they visit. It's been in the low 100s consistently. I have to say, it hasn't bothered me as much as the heat did in Indiana; take away the humidity and it really does make a difference. 

Sunday, May 27, 2018

Moving ahead...

I'm determined to make sure this blog doesn't become all about cancer, but since that's such a big part of my life right now, it's going to take a balancing act.

So how about we start with happy things this time around?!

Little by little we are making this apartment our home. Thanks to Tina, we were mostly settled in with what we had by end of day one. But since we'd brought very little furniture, we've had to do some shopping. I've scored great deals at a furniture consignment store, the Habitat for Humanity ReStore, IKEA, Amazon and my latest favorite: Wayfair. Both of our kids gave me gift certificates to Wayfair for Mother's Day! They know me so well 😂 I've always loved "nesting" and doing my best to create a calm, restful space to call home. The process of doing that this time has proven to be quite stress relieving in the midst of all the medical and insurance drama, and it just makes my heart happy to make things pretty. The world could use more pretty things, don't you think?! 

Have y'all heard of the Marco Pollo app, where you create video messages and form little groups with whom to share them? Our kids got us going on this, and we have a family group which is SO FUN! It's so nice to hear that little ding on our phones and know that either Jon or Tina has posted a short video. You know, grandparents can sit and watch a cooing baby face for a really long time, totally mesmerized by their beauty! Or laugh at the silly antics of the older grandchildren. What will they think of next!?

And because I am the quintessential grandmother, of course I have to share some adorable photos of my adorable grandkids 😘

Adalyn is as besotted with her baby sister as the rest of us. Aren't they absolutely precious?! Counting down the days until I get to see them!

I think they are going to be best friends, don't you?

I've mentioned the pool which the kids love (and Papa too!). So refreshing on hot days! I've not been in yet, but it's only a matter of time. Once I start feeling better and gaining some energy, I'll be joining them.

Simon loves, loves, loves to help Papa with projects. I ordered a set of Eames style mid-century modern chairs from Amazon and picked up a Tulip style table from IKEA for our dining nook, and Simon was Papa's #1 assistant on assembling those. I'm going to have to get his picture with a pencil stuck behind his ear like one of his favorite cartoon characters, Handy Manny. (The chairs around the table in the background are extra folding chairs we picked up for when we are more than four, and they are seriously the most comfortable folding chair I've ever sat on.)

And I'll finish up the cuteness allowance with this picture of Betsy, in her favorite spot in our apartment: the walk-in closet. Girl not only likes to play in there, it's where she takes naps (her choice!). Such a funny, sweet girl  💗💗💗💗 Love how each of my grandkids is so different and unique and special. 

Today Ivan and I celebrated our 39th anniversary by going out to breakfast at Mon Ami Gabi's, a lovely restaurant with some great gluten free options. I had the lightest, fluffiest, best waffles in my life! Usually gluten free baked goods tend to be heavy, but I really don't think I've ever had a better waffle, with or without gluten!

I'm so deeply grateful to be this man's wife as he continues to love and cherish me in sickness as well as health!

And then we came home and I'm hunkered down as day-four-after-chemo side effects hit. At least it doesn't seem to be as bad this time and I'm hoping the trend continues. 

But backing up... We left off last week with me in limbo regarding chemo when our insurance still hadn't come through for us. Ivan continued working the phones for hours on Thursday, Friday, and Monday but it wasn't until 9 a.m. Tuesday we learned I'd been approved for chemo -- which was scheduled for 9:45! To be honest, we'd been disappointed so often we weren't expecting the approval and had to rush around to get ready and out the door pronto! But we made it, and after meeting with the nurse practitioner first (since the oncologist wasn't in that day), chemo recommenced.

I felt better prepared this time, after a "chemo class" the week before, where the physician's assistant walked us through each of the side effects I'd struggled with the first round, and how we could mitigate and deal with them. I'm already experiencing fewer and less intense side effects. I think it also helps that I'm getting less chemo (they really blast you the first time and then ease up on subsequent treatments). Plus I'm not on antibiotics like I was last time which, along with the steroids they give you to offset other side effects, created the perfect storm for a horrible yeast infection in my mouth. I won't lie, I was a big baby for two weeks until the appropriately named Miracle Mouth Rinse finally cleared that up. 

But the biggest factor in experiencing fewer and less intense side effects is, I'm convinced, that I'm not packing and moving across the country right after a chemo treatment, so MUCH LESS STRESS. I'd highly recommend that no one else try that daring feat, because it almost did.me.in.

In other medical news, I had a brain CT scan on Monday. Fastest test yet, at just about five minutes. I told Ivan they must not have found anything to scan. "If I Only Had A Brain" from the Wizard of Oz immediately came to mind 😉 Since we haven't received a call about the results, I'm assuming everything checked out okay.

Continuing to deal with insurance stuff. Ivan spent another hour and a half on the phone yesterday as we are still trying to get assigned the primary care physician we want. He's been calling for three weeks about this, and every time we're told it's being handled and within 72 hours he can set up an appointment. And every time he calls the doctor's office, he's told we are not on the list yet! So frustrating, you have no idea. We've asked for a case manager with AMBetter so we don't keep getting booted around, and going through the same rigamarole every single time, but we were told they don't do that. But somehow (?!) Ivan ended up talking this Friday to the same person he'd talked to last Friday (coincidence? I don't think so! Thank you Jesus!) and when he pointed out she'd failed to follow through on a single promise she'd made, I think she felt guilty enough to go the extra mile and call the doctor's office herself and talk to someone in billing.

That meant Ivan was finally able to make an appointment, but not with the PCP we wanted because he doesn't have any openings until July. Ivan had been scheduled for an endoscopy in April because our doctor in Indiana thinks he has ulcers, but we naively thought it would be better to wait and get it done here (since, you know, life was a little crazy between me starting chemo and trying to move cross country at that point). We had no idea it would take more than two months to get this handled! He has an appointment to see another doctor in the same practice as the PCP we want on June 6th, at which point he'll get rescheduled for that endoscopy and hopefully we'll find out what's going on. Ulcers? Gallbladder? Something else entirely? We just want to know what's going on so we can address the issue.

Today was a perfectly beautiful day here in Las Vegas, with a high of just 81. Sad I wasn't able to spend more time outdoors, because the intense heat arrives this week and I don't think we'll have a break until fall. We've been told by many here that this Spring has been quite mild, and that last year this time it was already up around 110! I'm grateful for God's grace in easing us into the hotter climate. I recall our years in Florida back in the 80s when I'd get the kids up early to go grocery shopping (most of the big stores were open 24 hours even back then) so we could be home and back in the air conditioned apartment by 9 a.m. Pretty sure that's how I'll survive Nevada summers too!