How Many Things Can Amy Jam into 3 Months?

The answer is ALL the things. 

Here’s a little review of my recent history. 

Last time I had a PET scan in March, it revealed a growing spot of cancer in the femoral head of my left hip. So they scheduled me for 5 doses of radiation over a 2 week period in early April. 

At the same time, my jaw started to ache, and I got all in my head that I probably had cancer in the bone of my jaw (like ya do), so I went to the dentist only to discover that I had a wisdom tooth going wonky on me. 

Understand, all four of my wisdom teeth grew in straight when I was in college, which was like 100 years ago. Why is this one bothering me now? I had an infection in the tooth, and the root was poking out of my gum between my teeth and tongue, and rubbing on the side of my tongue, causing an irritating pain. So the dentist suggested getting it removed. I called the oral surgeon, and the next available appointment was in June. (This was the first week of April) Ugh! So far away! Plus I had to get clearance from my oncologist before I could do the surgery. He said I had to wait until after my next round of scans, which weren’t until late May, so June it was!

THEN a few days later, I got Covid. 2 years into the pandemic. I thought I was invincible! Darn. I had to miss all kinds of things, (poor me!), and my second week of radiation (which was really easy, painless and immediately effective) got delayed by a couple of days, and my regular (every 3 weeks) chemo appointment got pushed back a week. I did get monoclonal antibodies, and an antibiotic for my tooth, both of which did a number on my gut flora, but helped clear up Covid and my tooth pain relatively quickly.

THEN in the third week of April, I played 3 characters in “Into the Woods” on my worst chemo week instead of my best because of the reschedule. 

I’ve wanted to be in this show for AGES! 

So delighted to be a part of this amazing cast.

Jack’s Mother

Cinderella’s Stepmother

Poor Rapunzel… she had menopausal weight gain and hot flashes

 on top of all the other crap she had to go through. 

(I blame having twins in the wilderness)

I’m starting to understand why we don’t see many middle aged people on stage. Did I mention Easter was in there too? It was a hard three weeks, but I got through it all.

Then I rested.

Fast forward to today. By now, we’ve had Xander’s college graduation party (first weekend in May), finished off the end of the school year at USF, had two student recitals (USF and home studio), and celebrated Maia’s last day of high school. I’m in final tech rehearsals for Good Night Theatre’s next show, the Culinary Cabaret (next weekend- Matt & I are both in the band) and have started rehearsals for this year’s Fairytale Opera in the Park. It’s Memorial Day weekend, and Maia graduates in 2 days. Oh, and I’m taking a 10-month onilne course called “How To Run Your Voice Business Without Hating Your Boss”, and am working on starting a multi-teacher voice studio. 

I’m rarely bored.

I had a PET scan yesterday, and got the results this morning. And GREAT NEWS!

• The radiaion treatment is working. The lesion in my hip is shrinking, and the doc has every reason to believe it will continue to shrink. 

• There are NO OTHER CANCER MARKERS IN MY BODY! The lymph node in my right armpit (which is my problematic one) has a teensy uptake in activity (4mm to 7mm) but there’s a lot of scar tissue there, and any inflammation in my body can cause that spot to glow, so no reason for concern. We’ll just keep an eye on it.

• Dr. Jones says if my tooth is not bothering me, there doesn’t seem to be a real reason to go through oral surgery and introduce risk of new problems. So, unless the tooth pain returns, I’ll be keeping all my wisdom [teeth] to myself, thank you very much. 

• Due to the recent change in my chemo schedule, we don’t have to adjust my treatment timeline before Matt & I head to Paris (knock on wood) in July. Our trip will fall on my best week. Hooray!

• All my lab numbers are back to ideal, so I’m back to being Practially Perfect in Every Way. Just the way I like it.

Also, I’m having a great hair day

My Cancer is so Hipster

March 11 Facebook Update:

I had my once-every-three-month PET scan yesterday, and met with my oncologist, Dr. Jones this morning. The results are mostly good. Armpit is clear - whew! That's where it typically comes back and I've been feeling suspicious activity there for the last few weeks. In the past, that has meant an uptick in cancer cells around the damaged lymph node area, but get this: right now it means I've been doing arm workouts (!) and that tissue takes longer to recover than the other side. I've been doing some massage to break up the stuck lymph. Dr. Jones says I'm handling it perfectly.

On the less than perfect side: there is a spot that showed up in my left hip that doubled in size from my last scan. It could be inflammation or arthritis or it could be cancer in the femoral head. 

So Dr. Jones said he'd send the report over to radiation, which sounded to me like, "I'm going to have those guys take a look at this and tell me if it's anything to worry about," but then scheduling set me up for a 3 hour appointment next week with radiation! 😳

Jones doesn't seem very worried about it at all. Says they'll probably do a very short radiation series (5-10 daily treatments) and that should zap it and take care of it as well as any other inflammation in that hip.

I'll know more after next Friday's appointment.Hi

Take 3

 Hi Friends! 

If I'm back, it's generally not good news, but it certainly could be worse. I had scans this week, and they showed an uptake in cancerous activity in that same friggin' right armpit again, as well as a little glow in my left hip socket, which is new. But nothing in my sacrum or spine, so that's great news! 

We are going to change my drug regimen to a new drug. This one is called Enhertu (brand name) or Trastuzumab Deruxtecan. I can see why they have brand names. 

Most severe possible side effect is lung issues which can be fatal if left untreated. Starts with a dry cough, so I'll definitely notice if I have any of that. 

It's a more aggressive chemo, so more nausea, fatigue, hair thinning, and it will compromise my immune system. Yay... Of course, those were possible side effects with "Catzilla," and I didn't have any problems with it at all. 

My first dose will be Friday. The standard add-ons to combat nausea are Aloxi, which I have been taking with Catzilla, and a major bump in steroid (Dexamethasone). Like I've been at 2 mg (which is basically nothing) because 4 mg made it hard to sleep. The suggested amount for this is 12 mg. 😳

So I guess we'll find out Friday if I become a hungry rage machine, or a very chatty Cathy. Probably very busy. Maybe busy barfing. 

***OH WAIT!*** Next day update: Insurance has denied this new treatment. Because the best people to decide on my cancer care are insurance companies. 😤

Back to the fun stuff. I went back and read my last blog post from 16 months ago, and had to pause and lament the year that wasn't. [Time Capsule snapshot] As we all know, 2020 was a heck of a year!

   • It was the longest Spring Break ever. No "Singin' In the Rain" at USF. :(
   • No trip to Paris for us (we have a pre-paid travel voucher waiting to be used). Hopefully next July during the Tour de France. We didn't want to try this year with Europe in general, and France in particular, still having some troubles. 
   • Online everything. Teaching, shows, church, visits with grandparents. We all learned a lot very quickly.

But we made it through, and are feeling fairly safe to go out and interact with the world again. At the current moment, the Covid-19 Delta Variant is wreaking havoc on the unvaccinated, but in general, things are back to almost normal around here. On June 1, I went back to teaching voice lessons in person again in my home, since my whole family is vaccinated, as are the majority of my students (with the exception of the kids who aren't old enough to qualify). While online lessons will always be an option, I am so glad to not have to do them all day every day anymore!

I won't bore you with a run down of all the shows I still got to do during the Pandemic and since things opened back up, but I'll throw some pictures in. See if you can guess! Titles include: Greatest Hits Cabaret, It's A Wonderful Life, Christmas in July Virtual Show, A Very Virtual Valentine's Variety Show, 4 Broads and a Band, Royals Cabaret, Iconic Cabaret, Goldie B. Locks and the 3 Singing Bears, and The Fantasticks. Not bad for a year without live audiences! 

A Year Later...

Well, I've been doing what I said I would. I've been living my life. I had a wonderful experience with Steel Magnolias, and we even got to revive the show and take it on tour in November. We toured the bustling metropolises of Madison, Mitchell and Dell Rapids, South Dakota. It was a lot of work to regroup after several months and do the show again, but my Magnolias will forever be a part of my life. These women are so wonderful!

Final curtain

During the summer, I participated in my 10th Fairytale Opera as one of the Three Little Pigs singing some Mozart and fending off our Big bad Wolfgang.

At Christmastime, I got to be in a production of It’s a Wonderful Life: Radio Show with the Good Night Theatre Collective, playing one of 6 actors who did a radio show version of the movie. I played the role of the Stage Manager, Foley Operator (sound effects), pianist/organist doing the bulk of the underscoring, and some of the voices of the different characters. It was such fun! Plus, we got to dress in 1940s style, which is right up my alley!

WBFR in New York City

I’ve been maintaining my treatment regimen of a chemo infusion of Tamoxifen & Perjeta once every 3 weeks, and aside from never having a solid bowel movement, it all seemed to be going fine.

For a while anyway.

This Cleopatra regimen was supposed to last for decades, but at my 1 year check-up in January, the PET scan showed a small uptick in cancerous activity in that same lymph node area in my right armpit, where I discovered the lump in Oct. 2018.

So, time for Plan B. They took me off the Herceptin/ Perjeta combo and switched me to one called Kadcylla. Pronunciations of this drug vary, but my favorite is Kad-zilla. Which makes me think of a laser cat, attacking the city.

Rawr!

Here’s how I understand this drug to work. I’m probably not 100% accurate here, considering I’m a musician with a very big imagination.... but “Catzilla” functions as a Trojan Horse. It is a derivative of Herceptin, in that it targets cells in the body that have the HER-2 receptor on them, but it goes a step farther, in that it hides some powerful chemo and injects it directly into the cancer cells, decimating them from the inside.

Those who have been on Herceptin and transition to “Catzilla” (just go with me, I like this name) typically have few side effects, but these are the things I was to watch for: nausea, fatigue, hair thinning.

No, no, no! My hair is coming back curly and it’s so cute!

...and a little unruly, but that’s part of the charm of curly hair, right?

Well, nausea for sure happened. I had my first infusion on a Friday, and didn’t feel much like eating for most of the weekend, and noticed that taking my regular handful of supplements left me feeling queasy for a few days. I had the noble “First” of barfing at work on Tuesday that week. I made it to the bathroom on time (barely), was sure to use the stall that is the least favored, and did not ruin my outfit or my cute shoes. So could’ve been worse.

Fatigue is always a tricky one for me. I have more energy than your average Joe, so sometimes I don’t notice fatigue until I don’t have it any more. I was lazy over the weekend, but that is not uncommon.

So far, my hair is still great. Small victories.

A friend who has been on this drug for a while says the side effects definitely build up over time, so we will see how long it takes for me to notice the hair thing. I guess I have great wigs...

I have my second infusion this Friday, and will be in touch with my doctor about adding some anti-nausea medications to my protocol.

So how is all of this hitting me emotionally?

Thanks for asking. It’s not great. This news was harder for me than I expected. I didn’t break down & cry in the doctor’s office like I did for Diagnosis 2.0, or in the elevator like I did with Diagnosis 1.0, but you notice it took a full 3 weeks to report the news to the world. I think it is starting to sink in that this isn’t going to be as “easy” as it was the first time. I am starting to feel like I’m living in constant vigilance for the next attack.

I guess this is where I start enjoying every day as the gift that it is, no longer putting off that long- dreamed trip to Paris (booked! July 2020!) and not being too proud to ask for prayers. Obviously, this is bigger than anything I can handle on my own, so when you think of it, offer up a prayer for longevity. I have so many things I want to do in this life! Growing old with Matt is at the top of that list.

Scripture that is speaking to me right now: 

2 Corinthians 4:10-18  We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.  For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body.  So then, death is at work in us, but life is at work in you.  

It is written: “I believed; therefore I have spoken.” Since we have that same spirit of faith, we also believe and therefore speak,  because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you to himself.  All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.  

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 

The Beginning of the Rest of My Life

I had my scan day last Friday, PET, MRI and Echocardiogram. Plus a dentist appointment just for kicks. It was a very full day of laying still and not talking- which I suck at, so I took a lot of naps. I am really good at naps. It's a gift.

The day before that, I had my first targeted chemo only infusion- on a Thursday instead of my usual Friday. That means I had the two HER-2 drugs, Herceptin and Perjeta but no Taxol. I have to say, I noticed a difference on Sunday morning, when I'm usually so tired I can barely function, but I still have to sing in the choir and help lead worship during two different services at church. I don't know whether to attribute that to the Thursday infusion or the dropping of Taxol, or both, but it was a nice change! I didn't even need a 2 hour nap that afternoon!

Today (6 days after the scans), I went in to get the results from my oncologist and find out what's next. I'd be lying if I said I was not nervous. I have had some SERIOUSLY weird dreams this week!

Alright, bring on the news...

The news was not terrible. The lymph nodes are completely clean, but the bones are still inconclusive. On the PET Scan, they appeared to have healed nicely (indicating cancer that responded to chemo), but on the MRI, there was no change. They are VERY small lesions. My oncologist, Dr. Krie is considering it metastatic bone cancer, but with an asterisk because she hasn't seen biopsied bone cancer cells under a microscope. They are either healed up or too small to biopsy, so we'll just keep an eye on them, I guess.

She is choosing a middle of the road treatment. She is canceling the AC chemo (another round of harder systemic chemo) because in metastatic cancer it has not been proven to work. YAY! I will still have to do the targeted chemo once every 3 weeks forEVER (ever.... ever.... ever....) but they do not have as severe of side effects. My hair will grow back, and my energy will return. Hopefully my eyes will settle down (they're really dry/ watery, and have gotten 4 styes in 6 weeks. Annoying!) Unfortunately, Perjeta the poop drug is one of the forever drugs, but the hope is that fun side effect will get better when Taxol is no longer in the mix.

They should just put this on the label.

Dr. Krie wants to do surgery to remove all the lymph nodes in my right armpit, which I don't love, but I'm prepared for. (Remember my cool tattoo sleeve?) She also wants to do an oophorectomy (remove my ovaries) to eliminate all estrogen production from my ovaries. She is cool with waiting until the end of the school year to do these surgeries, but wants me to take a monthly shot called Zoladex to shut them down in the mean time. I will also start a daily aromatase inhibitor called Anastrazole to block estrogen production from my fat cells and adrenal glands. No, really, it's cool. When I picture my ovaries right now, I see Ursula's collection of poor unfortunate souls:

They've served their purpose.

It is possible that after surgery I will have to undergo radiation in my right armpit (lymph node area) and maybe the chest wall (original cancer site). I have made my dislike of this possibility clear. She says we'll discuss it more later- like maybe I can talk her out of it? I'm thinking this is like how I talk Matt into doing things. Just give him time to adjust to my plan since my ideas are brilliant but spontaneity is not really his thing... Anyway, that's to be determined.

She was very positive and said it was all good news. Still no expiration date on this girl, in fact, she said this maintenance regimen can give us "many, many years."

Yet to be determined

So for the foreseeable future, I'll be as "normal" usual, but I'll get my money's worth out of our insurance policy every year. I also have several new friends in the nurses at the infusion center, all of whom are taking a girls' night out to come to "Steel Magnolias" together!

Thank you for everyone's support, prayers, meals, driveway clearing, house cleaning, and ride-giving. Our community of support is amazing.

One goal complete!

Today was the last of the "Big Chemo!" I had my last Last systemic infusion of Taxol this morning. Wahoo!!! I got to ring the bell!

-pause-

The bell has a special story. A friend of mine, Randi Van Der Sloot, is also a 2x breast cancer survivor (who had a BABY just a couple of months ago!!!) tells the story in her own words:

(June 8, 2016)

Some really COOL news first: a family friend and co-worker of [my husband] Marty's has helped to make a dream of mine a reality. My dream is to have a bell of hope in each of the oncology infusion centers at the Prairie Center. If you take a look at the pictures below, you can see that this is a soon to be reality!!! I want anyone that goes to the infusion centers to be able to ring the bell if they have anything to celebrate-- this can be things like re-connecting with family or friends, not getting sick from their chemo that day, moving on- either completing chemotherapy, moving to hospice, etc. If you look at the pictures below, you can see that the bells and plaques are DONE!!! We will be presenting them to the Prairie Center soon. Each bell represents a significant person in my life who has been touched by cancer-- but you will notice that they are represented by a picture and a bible verse, not named specifically. That is very intentional, because I think that these plaques will touch people in very different ways. God is good!

These plaques were made by a family friend of
Randi & Marty's and are made out of acacia wood.
My floor has the one on the bottom left.
Randi says the cross represents the one she
held during all of her chemo treatments.

-OK, resume-

Saying it's the last one is a little deceptive. I still have to have the targeted chemo drugs, Herceptin and Perjeta, once every 3 weeks- possibly forever- so I have to go back already next week for that. But fortunately, they don't have as many side effects and my hair will grow back. It's possible the spontaneous diarrhea might back off when we take Taxol out of the equation, even though it is a side effect of the Perjeta. Fingers Crossed!

So here's what's next:

Next Thursday, Feb. 14, I will have labs drawn and a Herceptin and Perjeta infusion before work that afternoon. (Happy Valentine's Day)

Friday, Feb. 15 is a big day. They worked my scans around a pre-existing dentist appointment at 10, so I go in at noon to have my port accessed so they can use it for the PET scan at 12:30 at the Prairie Center. Then at 2:30, we go over and check in at the hospital to have an MRI at 3, and an Echocardiogram at 4. Don't worry, my calendar is free for the evening! I will definitely be resting after all that laying still for tests! Haha!

Then we wait... and wait... and wait until Thursday, Feb. 21, when I will see my oncologist, Dr. Krie for the result and next steps. The reason for the wait is because she will present my case at Breast Conference (undoubtedly less sexy than it sounds) on Tuesday, and she didn't have any appointments on Wednesday. It's fine. We've waited this long. What's another week?

This is where we find out if the lesions in my spine have changed at all. Remember, no change = no cancer in spine. So that's what we're hoping for, even though it means the treatment will ramp up because they will be going for a cure.

Poor Matt had to stay home from today's infusion because he tested positive for Influenza A yesterday. Both Matt & I had flu shots this year, but the kids did not, so we're all wearing our snazzy masks and have pretty much quarantined Matt to the basement.

For possibly the first time ever since wearing a handlebar mustache for the last 4 years, he did not wax it and style it today because it was going to be behind a mask all day and he wasn't leaving the house. Turns out, that makes it really hard to eat lunch. (Not the mask. He moved that to eat). He kept getting whiskers in his mouth and was sure he chewed up his glorious curls. "This might be the worst thing that ever happened to me!!!" Poor baby!

The good news is, Matt went in and got tested shortly after symptoms started because Kip, the other pastor at Asbury tested positive that same morning (while on vacation down South. Poor guy!), so he got started on TamiFlu right away, and though his voice sounds pretty rough, he doesn't feel too bad. The nurse told him he would be contagious until Tuesday. Unfortunately, he has to preach on Sunday. No hand-shaking after services this week!

Thanks so much for all the prayers, food, gifts and encouragement. I started back to work at USF on Monday (I don't teach during J-term). I have 24 students there and 8 at home and am looking forward to a great semester. Also, rehearsals for Steel Magnolias are in full swing, and it's going to be an amazing show. The cast is phenomenal, and the crew is working crazy hard to put together this wonderfully memorable show.

Here's a little promo:

Matt is also rehearsing his first musical since Earth Tone Man in college. He will be playing a role in Good Night Theatre Collective's original musical, Daytime: A Soap Opera Musical

Halfway There...

Actually today was 7/12 so I'm over the hill... again.

Latest activity:
We got through the holiday season. Whew! Actually, once the cabaret was over, I was also done teaching for the semester- second semester doesn't start until February, so I always have a 6-7 week Christmas break, so things have slowed down significantly. This is always how my life runs in December.

GO GO GO GO GO GO GO GO 

STOP!

I played/ sang one of our four services on Christmas Eve, we went to Matt's parents' for a couple of days and visited some old friends. Other than that, things have been pretty slow around here. Maia's back to school, Matt's back to work, and Xander & I are holding down the fort. He goes back to college this weekend.

In general, I feel pretty good. I rest on the weekends as much as possible, and on weekdays, I find that if I don't get up fairly early and just do something, I waste the entire day watching Netflix. I mean, that's fine sometimes, but I don't feel great if I'm not up and moving around.

I have had a couple more oncology appointments in the last few weeks. 3 weeks ago, I asked Dr. Krie, "So what's the deal with my spine? If these lesions are not cancer, what are they?"

She said, "It's probably cancer."

I said, "Yeah, but if it's NOT?!"

There is a chance that they are something else, but she says with as pervasive as they are, it is most likely cancer and the biopsy was inconclusive.

Well dang it. That's not what we want to hear!

She said that the only way we will know is after the first 12 weeks of chemo they will run full body scans again. That will fall roughly around Valentines Day. How romantic!

***this is important***

If the scans show no change in the spinal lesions, then they are NOT cancer, because cancer cells change. They would respond to the chemo treatments.

No change = No cancer

If they do change, then I'm officially Stage 4, and we go back to the Cleopatra Plan. 

Change = Cancer

So this is a targeted prayer request: that the lesions in my spine would NOT respond to chemotherapy.

One good indicator is that my spine does not hurt and I don't have any spinal symptoms, which should be many and varied.

Now for some lighter fare...

Progress on the hair situation:
I gave myself a pixie cut when my long hair started pulling out in big gobs. That's about the time I started wearing wigs in public and hats at home.

I usually have a strict rule to never cut my own hair,
but what did I have to loose?! Haha!

About a week after that, I was sick of hair falling out and landing in my food, so I had Maia shave it off.

This is the buzz cut. It lasted about 2 days,
then I shaved it bald in the shower.

The weird thing is, it grew back immediately, unlike the last time I had chemo and was shiny bald for a good 4 months. We'll see how long it sticks. If it falls into my food again, it's going bye-bye.

Here are the wigs I have been sporting most frequently:

Church/ fancy wig

Funny Girl wig
This is the one Maia decided to alter last summer.
It didn't used to have bangs. >:{

The Original Wig. My old standby.
I always know this one will look good.

My new Farah Faucett wig. This one is curlable!

My hats:

I hate turbans. I think they look weird. But I need something to keep my head warm without smashing my ears or making my scalp itchy. It takes a while to adjust to being able to wear a wig all day. My scalp itches A LOT, and the band across the back of the wig makes my head feel bruisy. The wig lady at Avera says it takes a couple of weeks, but that goes away. It's already getting better. 

Anyway, I wear hats at home. Like, I walk in the door and rip off my hair. My family is totally used to this. So far, I haven't freaked anyone out, unless the neighbors are watching.

I got this one for free at the cancer center. Matt picked it up for me when I asked him to go looking while I was in treatment one day. It's got tiny white polka dots on it. Everything else was too pastel. I like it because it's jersey knit and it's not too tight. It's too loose, actually, so I'll fiddle around with it. I already remade it to be more a slouchy hat with a red bow than a turban. 

I've been sewing a lot lately. I thought maybe instead of remaking hats, I could just make them from scratch. I'm not a turban girl, and slouchy isn't really my style either. I started poking around on the internet and Pinterest for patterns and came across cloches. DUH! So I made one out of scrap fabric I had on hand using this tutorial.

There was one small problem, however. Every time I caught a glance at myself in the mirror, I thought it looked like I had my lunchbox on my head! 

Sewing has been my current obsession, so I recklessly went to JoAnne's Fabrics- a very dangerous store for me- when I had plenty of time to browse. I picked up supplies for a stretchy pencil skirt, a dress or maybe leggings, pockets to put in all my dresses, and two new hats. 

I made the pencil skirt last week, and this hat last night. I wore it today WITHOUT HAIR! IN PUBLIC! And didn't even feel too weird. It's such a great hat, it distracts from the fact that there is no hair sticking out from under it.

It's a little big on purpose to make room
for a wig underneath and not squish my ears.
The lining is really soft and easy on my scalp.

Next up- the details on this hat. I started on that part this morning during treatment while I could still use my hands, but before I knew it, my hands had to go on ice, and I had to go back to watching Netflix.

Thanks to everyone who has been so supportive and sent gifts and food. We have been well cared for!

Rehearsals for "Steel Magnolias" officially start on Thursday! It's going to be an absolute riot.