Tuesday, December 11, 2018

Milestone Birthday

I'd gotten out of the habit of celebrating my birthday. Not that I think birthdays are a bad thing, or that I regret getting older (it beats the alternative!). I actually loved birthdays growing up, even if I do have the misfortune of being a December baby -- meaning I received a lot of singular gifts to cover both birthday and Christmas. Ha! Any other December babies relate to that?! But life got busy... and then busier, with so much to do, and it just felt inconvenient to take time out to celebrate. 

This year, though, my family decided that between fighting cancer and turning 60, we needed to mark the milestone. So I just enjoyed the BEST birthday week EVER 😍 Jon, Natalie and the girls flew in from California and it was non-stop family time. I got to hug on ALL the grandkids -- when they'd stop long enough, that is. Four kids aged four and under equals perpetual motion and noise! 😂 We enjoyed so many great conversations, sharing memories and making new ones that my heart is overflowing.
The Bellagio Conservatory transformed for Christmas
 
 
Checking out the holiday light display at the Ethel M Chocolates Cactus Garden

And don't even get me started on my birthday dinner! Kyle made a shrimp scampi that was beyond delicious and Natalie created another of her masterpieces: an absolutely decadent chocolate cake with a surprise in the middle!  (Yes, everything was gluten free!)
Dove candies, edible gold glitter and chocolate chips in the middle!

One of the highlights was reading really sweet comments from friends and family that Tina collected. She printed them off, cut them up and clipped them to the window blinds, hidden behind the curtains so I didn't even notice them until she and Jon drew back the curtains. What fun!

Along with awesome gifts, homemade cards from the grandkids... seriously, everything combined made for the BEST birthday yet.     

Thankfully I was far enough past surgery, feeling good, able to fully engage and enjoy the experience. Recovering from surgery was more challenging than anticipated, especially the first month. I'm happy to say the pain has decreased significantly since then. Whew! 

The pain levels started going down the week of Thanksgiving, so I was also able to enjoy time with my sister and her family who drove out from Colorado. We only celebrated Thanksgiving once while living overseas, so I relished every bite of the very traditional feast we shared at Kyle and Tina's. And to make the holiday even more special, we received the good news that chemo had done what it was supposed to do, and between that and surgery I'd gone from stage 3B to stage 0! Woot, woot!

This week the surgeon cleared me to begin radiation. It had been delayed a bit because of fluid building up, which necessitated weekly needle drains. This coming Wednesday they'll do a CT scan and use that to map out the plan for therapy. No exact date yet, but we anticipate radiation will start the week after.

2018 certainly hasn't gone the way we expected, but it's been a gift in so many ways. We are grateful for God's direction and provision, and have been reminded in very tangible ways what an extraordinary blessing it is to be a part of His family. Certainly worth celebrating!

Tuesday, October 16, 2018

Surgery Tomorrow

I'm more than ready to get surgery over with, but I'm also dreading it with my whole being. I have virtually no tolerance for pain and am the biggest, whiniest baby you've ever seen. So the next few weeks are going to be, shall we say, challenging for me...and for Ivan. Appreciate prayers that the surgery will go well, and recovery will be without any complications or infections.

On top of surgery, I get to start taking anastrozole the day after. This is an estrogen suppressant medication, and protocol for women who are post-menopausal and ER positive. I'm actually triple positive: estrogen, progesterone and HER2 (human epidermal growth receptor 2) positive. Go me! Anyway, anastrozole will basically put me back into menopause and, having been there, done that, I'm not real excited about going through it again. It wasn't fun the first time around, and I'm not expecting it to be fun this time either. My oncologist would have started me on it earlier but held off because I've been so miserable with the bronchitis and lung issues.

Hair growth is proceeding at a snail's pace, and I'm beginning to doubt I'll have more than an inch by the end of the year. The other discouraging thing is that I have a receding hairline! Yikes. My mom always said I had a high forehead and needed bangs -- as evidenced by the this 4th grade school photo -- and, if there were any doubts before, there aren't now. I'm going to need a minimum of 2" (3" would be better) of hair to somewhat cover the glaring, ginormous area of hairless skin a.k.a. my forehead.

Have any of y'all watched Home Town on HGTV? I started following Erin's blog years ago (and liked it so much I went back and read all her posts going back to the beginning). She called it "Make Something Good Today" and she purposefully recorded at least one good thing each day. Anyway, a few years ago she and her husband were contacted by HGTV about doing a pilot, and that led to the creation of their show, now entering it's third season in January. I've been a big fan from the beginning, and snatched up their book when it was released a couple weeks ago. It's a compilation of her journal entries expanded to include other things that were going on in their lives, and both Erin and husband, Ben, share from their unique perspectives. It was such a fun read, probably made more enjoyable because I've followed the blog and their unfolding HGTV adventure from the beginning.

Looking forward to the premier of another new HGTV show,  Best House on the Block, featuring an interior design blogger I've followed for years, Lauren Liess and her husband Dave. I've loved every room and house she has designed (and have her book too), so I'm excited to see their show. Although it's an HGTV show (and will eventually air on that channel), it's debuting on the DIY Network on November 8th.

I'd love to see HGTV add a LOT of new shows, because I can't handle the channel these days with their shift to accommodate binge viewers. I'm sorry, but no way, no how, do I want to see six episodes of anything back to back (or worse yet, an entire day of something). Ugh! It seems like the majority of cable channels have gone in that direction. Even the big three networks are starting down that rabbit hole. I'm curious if other parts of the U.S. have this issue: the local CBS station starts their news programming at 4 p.m. in the afternoon! So we have a half hour of national news sandwiched between 1-1/2 hours of local news before and another hour of local news after. THAT IS THREE HOURS OF NEWS. If I wanted to watch that much news, I'd tune into a dedicated cable news channel.

Talk about going down a rabbit hole... Sorry, not sorry, about that rant.

Let's talk about something more pleasant. Like the weather. Not even kidding! Our weather went from sizzling hot (108 average temp this summer) to gorgeous, amazing, beautiful 70s and 80s and lows at night down into the 50s. Yes, please, and thank you!!! Open windows, fresh breezes... loving it. So glad (and grateful) for the change in weather before surgery. Had I kept to my original surgery date, I would have been sweltering under all my bandaging on the way home from the hospital; now I don't have to worry about that. It's a small thing, but isn't it the small things that tend to make us the happiest?

Speaking of small things, I think it's about time I share some photos of my adorable grandbabies (although they're growing so fast, I can't technically call them small any more; but it did make for a nice segue into this paragraph). Up first are Simon and Betsy in their traditional October t-shirts --  scary how cute they are!!!

And here's Adalyn photo bombing Eisley's five month photo shoot... these two are hilarious and it makes us so happy to see how much they enjoy each other (although there are times when Eisley is clearly over so much attention from her big sis 😜).

Now that you've had your cuteness quotient for the day, my work here is done. Thank you and good night.

Saturday, September 29, 2018

The Coughing is Ridiculous

As expected, the coughing and continued lung inflammation pushed surgery back. Not expected was the three week wait (it's now scheduled for October 17); I'd anticipated it happening a little sooner. But as I've so often said in the past: "Es lo qué hay." At the rate it's going, it will take that whole time to get past the inflammation. I've never had a cough hang on this long, but then I've never been through chemo before and we think my body is just taking longer to bounce back than it normally does because it's been through so much this summer.

My doctor is hitting the inflammation with everything in his arsenal. He upped my steroids: a decreasing dosage wherein I was on 30 mg for five days, then 20 mg for five days, and tomorrow I start with 10 mg for 5 days...This is the third round of steroids in the past five weeks. He prescribed a Nebulizer and I've had a week of 8 breathing treatments a day, now down to 4/day through Tuesday. Yesterday we refilled prescriptions for the heavy duty cough syrup and the cough "pearls", both of which help me sleep better at night. Even so I'm waking up with coughing fits between 2-6 a.m. every.single.morning. Half the time I'm able to get back to sleep and the rest of the time... Let's just say I'm perpetually sleep deprived. He'll reevaluate my progress when I go in for the next Herceptin treatment on Wednesday.

I feel better than I have in months, despite the cough, like I've turned a corner both physically and mentally. I've actually had some energy this week! It's a wonderful feeling and I'm praying it continues.

I'd thought about putting up some freezer meals before my surgery, but then felt so yukky before the original surgery date that I put it right out of my mind. With surgery rescheduled, and feeling more energetic, I revisited the idea. This week I've slowly worked through six recipes and have 16 packages prepped and frozen! Several simply involved chopping meat and vegetables and throwing them in freezer bags, but a couple I precooked in the crockpot and then froze. One was a recipe for Thai chicken curry which I ate for dinner that night and put up the remainder. It was good! Pinterest is a wonderful tool for projects like this. I'm going to put up a few more meals this week, so post surgery meal prep will be a lot easier for Ivan (and/or me).

I even had enough energy one day to clean the apartment (in the five months we've lived here, Ivan's done 90% of the cleaning). It took all day, with lots of breaks between chores, but the apartment is small enough that it was totally doable in a day. While I'd love a second bedroom one of these days, having a small place is definitely advantageous for our current situation.

I feel like I've had more mental clarity, too. Chemo brain turned my brain to mush... concentrating was so difficult, and I often couldn't get through a complete thought, much less a sentence. Not even kidding when I say the last blog post took me three weeks to finish. I had to keep going back and chipping away at it, bit by bit. I'm still not where I was, and by mid-afternoon I'm both mentally and physically exhausted, but having that energy in the morning/early afternoon has been an absolute delight!

One of the books I've read recently made me even more grateful that chemo brain is a temporary thing. "One Hundred Names For Love" by Diane Ackerman is about their experience when her husband had a massive stroke and was left unable to communicate for a long time, and chronicles their strategies for helping him gain back at least some of his speech and writing abilities (he was an author of dozens of books before his stroke). I found it fascinating, but also a little frightening to think how quickly one can lose the ability to do something as vital as communicating.

On the other end of the spectrum, I read "Eat Cake" by Jeanne Ray which was a fun but "fluffy" book... very light reading and oh, so entertaining. While others close their eyes and imagine themselves on a beach or sitting in a café in Vienna, the protagonist in this book pictures herself inside a cake -- like literally inside it! That thought made me smile, and the entire book was just a fun read, because everything piled on at once and she needed a lot of cake to get through it: her husband loses his job, her 16 year old daughter is...well, 16... her mom has been living with them a year and then her dad has to move in after an accident and her parents, who have been divorced for decades, despise one another... It sounds awful but it's actually quite hilarious. It was good to follow up such a serious book like Ackerman's with this lighthearted romp.

It would appear my hair is going to be the same color it was before I lost it: bits are coming in dark and other parts lighter, which is what it was like pre-chemo. It's still really short -- like I said, my hair has always been slow to grow -- but more noticeable day by day. I can't get the nursery rhyme "Fuzzy Wuzzy was a Bear" out of my head. haha!

Ivan is doing great nine days after surgery. His follow-up appointment with the surgeon is Friday and we'll find out if he needs to continue with any restrictions. I think the hardest part for him has been not being able to pick up the grandkids, or play with them in the pool. He can still do other things with them, though, so it's all good. When they were here Tuesday, they spent a good part of their time piled on the recliner with him, reading and talking. Those kids sure love their Papa! And he loves them :)

We'll get to spend some time with the other two grands in a couple of months! Jon, Nat and the girls will be flying in for my birthday week in early December. I'm so excited I want to do the happy dance! I'll be six weeks past surgery by then, but won't have started radiation, so the timing couldn't be more perfect. And I think December in Vegas is going to be fabulous with temperatures in the high 50s/low 60s. Way better than freezing cold, snow and ice like we'd be having in the Midwest.

I didn't think we could have a Christmas tree because this is such a small apartment, but the other day I happened to think of putting it between the TV and rolling library cart. It would have to be a small tree and would make the space feel a little crowded, but it's only for a few weeks... I just love having a tree so much... will have to give it some more thought. Can you believe Christmas is only 87 days away?!

Hopefully I'll feel up to doing some sewing between now and then, because there are a few things I'd like to make the grandkids. To that end we've been on the lookout for a sewing table that would fit in our bedroom; we needed something fairly narrow but long, and I was thrilled when we found one on Facebook marketplace recently. Next up is getting my sewing machine tuned up. It was starting to give me fits last year as I worked on the fabric fort I made for Simon and Betsy for Christmas; I meant to take it in for a tune-up then but got sick... and, well, here we are ten months later.

Christmas... so many memories, thoughts and emotions wrapped up in this one holiday. I know everyone has their favorite holiday, and Christmas has always been mine. I think because it was my mom's and she went all out to make it as magical as possible for my sister and me. Becoming a follower of Christ in my teens, and understanding how His birth affected the world, only added to my love for it. And now, with all that's happened this year, it brings yet another perspective and motivates me to focus on all that it means.

Wednesday, September 19, 2018

Gearing Up for Next Phase

Four weeks out from my final chemo treatment and I'm starting to gear up for the next phase. Were it not for having suffered for weeks with severe asthma + bronchitis (and a persistent cough), this would have been my "easiest" post chemo experience to date. It's been a month with two rounds of antibiotics for the bronchitis, two rounds of steroids to open my airways, cough syrup with codeine, little gel caps they call 'cough pearls'... but the coughing seems impervious to all our attempts to put it to rout.

I thought the drier Nevada climate would alleviate the asthma issues I'd been having in Indiana -- and it probably will be better when my body has time to bounce back from all the stress chemo has put on it -- but it's made me aware that this is something I'll have to be cognizant of even out here in the desert. The smoke from the California wild fires that drifted over the valley two months ago and just settled in for a while was more than my lungs could handle at that point. Live and learn.

I'm scheduled for surgery one week from today... BUT only if we can get this cough under control. I have a few more days on the current steroid regime, but at this rate I'm pretty sure we'll just have to turn around and start another one. Not feeling very confident that we'll be able to stay on schedule due to the lingering inflammation in my lungs (had a CT scan last Thursday which showed no more infection [Hallelujah!] but a LOT of inflammation). I would so like to stay on schedule! Will you pray that this will clear up and I can go ahead with surgery on the 26th?  

I'm starting to educate myself on what to expect, both right after surgery and in the months to come. In a private Facebook group, the ladies talk about the challenges of finding clothes to fit due to the realities of having uneven post-surgery bodies. A recurring theme is using camisoles to both smooth things out, and wear under other shirts to help prevent chaffing from fabrics that aren't very soft or have lots of seams. I have never been a big wearer of camisoles so asked what brands they used (answers were all over the board) but several suggested I initially either get a pack of men's soft undershirts or go to a thrift store, because the ones I wear at the beginning will get stained anyway, so why spend a lot of money on things I know will get ruined? Preferring a variety of colors, I grabbed four at a local Goodwill and they're washed and ready to go. It felt weird buying size small, but based on the weight loss I've had this summer and the amount of body I'll be losing to the surgery, I know small is what I'll need. Snug (not tight) is good, the ladies said, because it holds the uneven and, to begin with, jiggly parts together (there will be some swelling for an extended period of time). I was surprised to learn that even if I wanted to (which I definitely don't!), it would be 4-6 months before I'd be able to wear a bra. Basic surgical healing takes place within 6 weeks, but it's months before the body becomes accustomed to its new normal. Who knew?!

The whole fashion aspect is something that's caught me by surprise. Everyone who knows me, knows I'm about as far from a fashionista as you can get; for me, it's all about the comfort! At the same time I do want to look presentable, so a while back I started following the blog "I Don't Need Two: Mastectomy Fashion Without Reconstruction", the first fashion blog I'd seen for those who choose not to have reconstruction. Since then I've joined a couple of private Facebook groups, including Fantastic Flat Fashions. Our society/culture is not really ready to accommodate those of us who choose not to have reconstructive surgery, so it's encouraging to see signs that is starting to turn around. I was especially encouraged to read about a group at the Kent State University Fashion School who are focusing on "flat fashion" in their design class this semester. Because no female dress forms are flat, and male forms are (obviously) not shaped like a woman, the group reached out to one of the women in the FFF forum to serve as a "living" dress form. And they've asked her to get input from the Facebook group as to what we'd like to see and need in fashion design. It's been really helpful for me to learn from all these other women about what works and -- equally important -- what doesn't, when it comes to finding things that fit and look flattering. It prompted me to pick up a pretty red blouse when I was shopping for camisoles, because (1) it didn't have any darts and (2) it was high necked with a pretty collar drawing the eye up. I'm thinking it will make a very nice top for Christmas time.

The other fashion dilemma I've learned about is what the ladies refer to as the "buddha belly". I'm already pear shaped, but that's going to be accentuated after surgery, and I'm not alone with this predicament! It's a common malady for those who choose to stay flat, and suddenly the bottom half of your body seems even larger than it was before. That's a tougher fashion nut to crack, but I am learning some tricks from this amazing group of women who gladly share what they know and learn with one another. 

At my pre-op appointment at the surgeon's office last Friday, Ivan learned how to empty the three drains I'll have, and how to fix a clogged drain should that occur. The whole thing grosses me out and I'm glad I have a husband who isn't squeamish and is willing to take care of things like this for me. I'll gladly keep track on the chart of the amounts he empties from each of the drains, but this southern girl will keep her eyes firmly averted while he's handling the yucky part. Everyone is different, but most women are able to have the drains removed a week or two after surgery (the threshold is less than 30 cc per drain per day before they can be removed). Rarely does the surgeon leave the drains in a third week, because the chance of infection goes up exponentially. In very rare cases, drains are removed after 3 weeks and women have to return weekly for needle draws of the fluid build-up.  I'm praying I can have the drains removed after just one week! This Monday I was fitted and then picked out the specialized camisole I'll wear at the very beginning, with it's nifty built-in pockets for the drains.

I've also started hitting the gym to try and build up some stamina after a summer of being a literal couch potato. I've never been so exhausted in my life as I have this spring and summer. Even when I was so fatigued before and after the celiac diagnosis, I was able to function for a few hours a day. Not so this summer. I've spent most of it planted on my couch or in my bed, with almost zero energy. I can't say I'm setting any records on fire (except maybe how pathetically long it's taking to do even minimal amounts on the treadmill) but I am seeing progress, poco a poco. And some progress is better than none, right? I added in reps on the arm weight machine, too, so that physical therapy after surgery won't do me in. I'll have to work on getting back range of motion, which shouldn't be a big deal with the left arm, but definitely will on the right where they'll be removing lymph nodes. I want to be proactive, too, in learning what I need to do physically to reduce the chances of lymphedema down the road (swelling due to removal of the lymph nodes). Getting these flabby arms in shape is step #1.

On a happier note: my hair is starting to grow back! I noticed last week that my head felt soft instead of bristly, and this week we can see fuzz! It's growing back kind of weird, there's more around my ears than on top at this point but it is growing all over. The biggest difference is that my head seems hot a lot now, so when I'm home I rarely have anything on it. Before I had to have a beanie or scarf on all the time because my head was constantly cold. I read on the breastcancer.org site that hair will grow about an inch a month. I think that's optimistic for me, as my hair has always grown very slowly, but I don't think it's unrealistic to think I might have about 2" by the end of the year. I'm really curious as to whether it might come back in a little curly, like many do. I've never had curly hair except for those unfortunate perms, so I think curly or wavy hair would be fun!  

Meanwhile Ivan's been busy with his own medical issues. He finally had the endoscopy and colonoscopy a few weeks ago. The initial report was good, and the two bits they sent out for biopsy came back clear. Yeah! He'll also finally be having minor surgery tomorrow.

A new wrinkle is that he's been having dizzy spells (for lack of a better term) since early August. He mentioned them early on and at first we wondered if it was a simple matter of needing stronger glasses, so he had an eye exam the 2nd week of August and determined that wasn't the issue (very little change in his prescription from two years ago). Then he maintained what I call "radio silence" on the subject...until it got really bad after the endoscopy/colonoscopy procedure; we think maybe the anesthesia exacerbated the situation, but we honestly don't know. Long story short: he saw his PCP who ordered a CT scan of his brain, but when things got worse that night and he couldn't sleep, we ended up in the ER. As he explained to the doctor, it's not so much feeling dizzy as feeling "off" and unbalanced, like his depth perception is messed up, and it happens even when he's in bed with his eyes closed. It's not constant, but rather triggered by movement: standing up, walking, rolling over in bed...and it's accompanied by a dull ache between his eyes. They did a CT scan at the hospital which didn't show anything so the next thing is to see a neurologist.

I told Ivan it feels like we're playing Medical Whack A Mole; we deal with one thing and another pops up. This year has been so weird as we've both been hit with what seems like constant, random health issues. I guess it's better to get it all over with in one year? Or at least the bulk of it. My treatment will last through most of the coming year too, but will be so much less than compared to this year. Thank goodness!

It's not just us either. So many friends and family are going through health crises of their own. My prayer list includes many who are dealing with everything from cancer to kidney stones to shingles... And maybe I'm just more tuned in now, but I see so many memes on Facebook that humorously point out how our bodies begin to fail after a certain age. My favorite so far:

Ain't that the truth?! 
  

Thursday, August 23, 2018

First Milestone: Chemo is OVER!

Almost a month has gone by since my last post. In some ways it's been easier (fewer, less intense side effects after chemo #5) and more difficult in other ways (smoke from the California wild fires blew this way, settled over the Vegas valley and that triggered my asthma which turned into bronchitis).

Ivan loves to figure out how things work, so after my Neulasta had done its thing last time, and he peeled it off my arm (FYI: Goo Be Gone is great for getting those things off! Made it a lot less painful.) so he could figure out how the mechanism worked. He was intrigued and still not completely clear on how it works, but he sure had fun trying to figure it out!


With chemo #5, for the first time, I did NOT get the dreaded Taxotere rash, for which I'm very, very thankful! The mouth infection I get every time wasn't as severe either. Double score! Exhaustion and diarrhea, however, continued to keep me down. My oncologist agrees that having celiac disease probably doesn't help; my intestinal system was already compromised and chemo really does a number on it. Glad that in a month that will (hopefully) be all behind me. Insomnia, an ongoing issue for years, continues to be a problem. I'm not sure how much is just same old, same old, and how much is due to chemo. It doesn't help when you have to get up multiple times in the night to run to the bathroom...after a while you just can't get back to sleep, no matter how hard you try. Es lo que hay. Really hoping that chemo #6 mirrors #5, with fewer, less intense side effects!

I was a little nervous about whether the oncologist would push chemo out a week again, because up through Tuesday, the diarrhea continued (and that's why it got pushed out last time). But, Hallelujah!, I woke up yesterday and did not have to start the day with an Imodium. Thank you Jesus! So we packed up like we always do for chemo day (you'd swear we were moving in!) and off we went, fairly confident things would proceed as planned. And they did!
Last chemo!!!!

The clinic was the busiest I've ever seen so yesterday I waited 45 minutes to see the doctor, and then more than half an hour for a chair in the chemo room. No kidding, I was the last patient out the door last evening at 6:15. I get a LOT of drugs: two immunotherapy and two chemo along with three drugs that mitigate side effects; that adds up to a lot of time, since they can't be done simultaneously and the main drugs take an hour each while the mitigating drugs take 1/2 or so each, and then they have to put on the Neulasta patch. Made for a long day!

And it wasn't over yet, because I'd placed an online order at the grocery store to be picked up between 6-7, so we headed straight there since it's 1/2 hour from the clinic. On the way home we also had to stop at CVS to pick up the antibiotics for the bronchitis. I was so tired by the time we got home, I ate supper and crawled into bed! 

But let's back up. Yesterday I found out that it's a tradition to get pink balloons on your last day of chemo. What a fun surprise! I knew about ringing the bell when you finish radiation, but not about the balloons after chemo. Even though I'll still be going back every three weeks for Herceptin, yesterday marked the end of official chemo. Woot!
Yes, I dress this way for chemo day! Comfortable, lightweight sweat pants rule the day!

I did manage to lose one of the balloons on the way to the car, but that left two which is just enough for the grandkids 😀 Simon and Betsy were here this morning and they had fun playing with the balloons for a while, and it was fun to see the games they thought up!

Monday I saw the surgeon. She's totally on board with my decision to go for a bilateral mastectomy, given my family history and the fact that I can't have MRIs (that would help give a clearer picture of what's going on). She was also totally on board with waiting six weeks, to give me time to fully recover from this last chemo and hopefully gain a little energy first. So that puts surgery probably some time the first week of October.

I was surprised to find out it's an outpatient surgery! But she explained hospitals are not a good place because the chances of getting an infection are higher in, than out, of a hospital. That was something I was concerned about, given my body is so physically depleted (and was before we even started on this cancer journey). There are scenarios where they'd admit me, but I'm hoping we won't run into those. She explained surgery will begin with her placing a radioactive seed under the nipple of the affected breast and they wait to see what, if anything, lights up. The PET scan last month showed a lot less cancer activity in the lymph nodes (none in the breasts) so hopefully the last two chemo treatments will help bring that activity to a complete halt.

I'm glad Ivan was with me, because he was able to clear up some confusion for me later. From what I understood, she either takes no lymph nodes (if nothing lights up) or she takes out the whole axillary cluster. But Ivan said she told us that if the radioactive seed works, it will show which (if any) nodes need to be removed. However, it may not work well, if chemo has damaged the ducts, and if that's the case, the radioactive material won't be able to travel to the lymph nodes, and then she'd have to remove the whole axillary cluster. If she has to take them all out, I'll be facing issues with lymphedema down the road. Sharon had lympedema pretty badly on the affected side, and I'd wrap her arm with Ace bandages at night (not comfortable!) but later her insurance paid for a special machine she could use daily.

The surgeon was patient in answering all my questions... Healing will take about 6 weeks, the drains should be out in 2-3 weeks, I'll have a scar all the way across my chest (not going for any type of reconstruction), and she'll determine when I can start radiation. That last is especially a relief, because I was nervous about starting radiation while still healing from surgery.

Because I'm choosing to wait six weeks for surgery, and it will likely be six weeks after that before I begin radiation, I'm letting go of the expectation that I'll be done with the worst of treatment by the end of the year. I'm just going to plan on radiation continuing into January. If I actually manage to make it through without having to pause, and do get done by the end of the year, then I'll be happily surprised! But if I don't, I won't be surprised or too sad. Ivan tells me I'm too pessimistic, but I say I'm just being realistic 😉 

Actually I'm learning it's just the way I'm made. I've been reading up on the Enneagram, and taken the test which confirmed I'm totally a 6. Early in August I read "Reading People" by Anne Bogel, who delves into the various ways we determine personality. Fascinating book! I read it and then started reading it aloud to Ivan before my voice gave out from the smoke induced asthma. I've just finished reading the sections on 6s in both "The Road Back to You" and its companion "The Path Between Us" and although I'm not a 'perfect' six, I do match 95% of the description. It can be rather disconcerting because most of what's written is about the negative aspects of each number. But in "The Road Back to You", the author explains that's because it's easier for people to see the negatives in themselves than the positives, so it's a lot easier to determine your number. They do talk about the positive aspects, which helps, but I'm thankful for them shining the spotlight on the negatives and giving concrete suggestions on how to change those parts of yourself that make you cringe. (And believe me, I cringed a lot while reading about 6s!)

I've had a hard time reading this summer because chemo brain (yes, it's a real thing!) has made it hard to focus or concentrate. I only managed to read two books each in May, June and July. But this month I'm picking up the pace -- albiet a slower pace -- that's allowing me to get back to reading more often. I've actually read 9 books this month! Well, 7 whole books and parts of the two I mentioned. I do want to go back and read about the other Enneagram numbers, but all in due time.

I binged read the trilogy by Marisa de los Santos featuring the same characters: "Love Walked In", followed by "Belong to Me" and then ""I'll Be Your Blue Sky". I have to admit I started with the last first, because I didn't know it was the last of three! I enjoyed it so much, I didn't mind going back to read the beginning. And they really are stand alone books, but so much more delicious together! They're not typical romance novels at all; each is imbued with a mystery that slowly unfolds, as do the characters. I also enjoyed the newest book by Linda Castillo whose protagonist is the chief of police in a small town with a heavy Amish and Mennonite presence, who herself grew up Amish. Her books can be rather dark, but aren't heavy on the blood and gore, so I can handle them. What I like is how the main characters have developed throughout the series, and that I rarely figure out "who done it" ahead of time. Is there anything more frustrating than figuring out the end at the beginning of a book?! I think not! I also read a couple of books that I put in the "well, I'll never get those hours back again" category. Not absolutely horrible -- I give books 2-3 chapters and then I'm outta there if they don't keep my interest -- but also not worth mentioning by name.

Summer here is starting to wind down. We've gone from an average of 108 down to the low 100s, and everyone tells us in a month it will start to get bearable again. I'm all for that! I'm hopeful that as the weather cools down, I'll start feeling better and be up to exploring the area. Ivan's done a bit on his own and with Tina and family, but I've pretty much been a hermit since we moved here. Anyone been to Vegas or Nevada and have suggestions of places we should visit?   

Wednesday, July 25, 2018

Three Months In

Three months ago yesterday I had my first chemo treatment. It's been a rocky ride ever since...

The good news is the PET scan I had last week showed the cancer has not spread!

The bad news is I've had such a rough time since the last round of chemo that my oncologist has pushed the next treatment out for a week to give me more time to recover. On the one hand I'm grateful for the additional time because I truly feel miserable, but I'm slightly bummed because this just means it'll take longer to finish. My hope of getting through the worst of the treatment plan before the end of the year is starting to fade.

The good news is my sister came to visit! I wish I'd felt better and been able to do more, but I'm just so grateful she came to be with me for a few days. One night we had dinner at Tina's and the grands enjoyed having her read to them.

The bad news is the engine light in the car came on again. It was in the shop for 8 days, and the light came on within an hour of picking it up so back it went. They adjusted something and the light went off... and now it's back on. It's probably an easy adjustment but a pain that I have to take it back. It ain't happening today though; maybe I'll feel up to driving it over tomorrow.

The good news is Ivan's in Indiana celebrating his mom's 97th birthday! Her birthday is actually Sunday but the family is gathering today. I'm sad to be missing the party, but thankful Ivan could be there for it.

The bad news is...

Oh, let's just forget the bad news!

My sister and I watched Temple Grandin while she was here. I'd seen the movie years ago, but it's a favorite and I enjoyed watching it again. Beth's an occupational therapist in the school system, so she works regularly with autistic kids and she found the movie to be as inspiring as I did. Have you ever seen it? Highly recommend it! I've seen the real Temple Grandin interviewed on a news magazine show (can't remember which one) and she's an amazing woman. FYI, the movie is free on amazon prime video.

I found out from my sister that my favorite television series is also available on amazon prime video!!! The Closer featuring Kyra Sedgwick as Deputy Chief Brenda Leigh Johnson of the LAPD. I'd just finished re-watching all 15 seasons of NCIS so perfect timing! I just want to say to amazon, "Thank you! Thank you so much!"

Our grandkids continue to bring such joy to our lives. We get to see Simon and Betsy often, and we FaceTime multiple times a week (and Marco Polo!) with the California grands (and their parents of course 😉).

I've had the chance to spend time with just my daughter, and with my daughter and sister... do I even need to say how precious that has been?! Had so much fun with those two last evening, trying on some of the pretty Noonday pieces Tina has bought for herself and when she does trunk shows as an Ambassador for the company. I've never been big on jewelry but Noonday has changed my thinking; not only is their stuff absolutely gorgeous, but I love knowing that when I buy something, I'm helping another woman somewhere else in the world to provide for her family. These women are using their ingenuity to produce stunning jewelry and accessories. Women helping women pursue their passion and creativity: what's not to love?! And it has made gift buying sooooo much easier, because they have so many diverse pieces in their collection that I'm bound to find something for everyone, from teens to those my age and older.

After so much trouble and grief with our health insurance company in May and June, things are finally turning around and we've had some really helpful people start to get things straightened out both here and back in Indiana. Things are not completely resolved yet, but the end is in sight.

I cannot begin to tell you how grateful I am for Willis Carrier, the father of modern air conditioning, as well as all those curious minds from before who kept looking for efficient ways of cooling the air. The low last night was 90 degrees. It's 113 degrees right now. Need I say more?

In three more months, hopefully it will be significantly cooler and I'll be that much closer to being done with treatment. Bring it on!

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!