Going Bald… again…

Well, dang it. I’m losing my hair at a very rapid pace these days. This is the 3rd time I will have gone bald due to cancer treatments, for those keeping score at home. It’s not as traumatic as the first time, and I’m taking it in stride. 

My hair started falling out last Thursday. I am shedding like a long-haired cat in the summer heat. Even though I’ve felt like my hair’s been thinner these last few years, I’m losing vast amounts daily, and can’t believe there’s anything left up there! 

This quote happens a lot at our house right now…

As a result, my bathroom is covered in my pelt. I’ve decided to rename it Gaston. 

I also like the idea of saying, “Excuse me, I have to go 

visit Gaston” when I need to use the bathroom.

Anyway, I made an appointment at the Avera Wig Salon at the Prairie Center right away to order a nice wig with some “maturity” in it, so that when my hair grows back in again (fingers crossed!), it will look roughly the same color.  I went in yesterday to try some colors and cuts out. I opted for this combination. 

The top row is the color

Bottom row is the cut.

Fingers crossed that the combination is in stock, and I’ll get it on Tuesday (6 days, but who’s counting?)

I also decided to visit with the Palliative Care team at the Prairie Center to help manage my pain, and they gave me some drugs: Dilaudid and Ritalin. I was loathe to use either of them because I don’t want to get hooked on anything, but the Dilaudid works well alongside Aleve to keep my aches and pains away, and the Ritalin seems to help my perkiness level. 

Yesterday, I visited Dr. Dawn Flickema at the acupuncture clinic (again at the Prairie Center. I basically live there now), and told her my litany of problems. She said for generalized aches and pains, they do acupuncture on the ears and the scalp. 

ohhh kay…

Oh AND, she put acupressure “seeds” in one ear to help stimulate the areas she needled for longer. These metal seeds will stay in for 3-5 days, then just fall out. She only does one ear at a time, so I can still sleep on the other side.

There are 5 metal “seeds” activating pressure points to help relieve pain.

Also note the headband is covering a lot of visible scalp

Now, I don’t know if it was the acupuncture, the Ritalin or the wig shopping, but yesterday afternoon after all this, I felt AMAZING! Or maybe normal? I can’t remember what that feels like anymore. But I had energy, I was in a great mood, I EXERCISED (practiced choreography) for a solid hour! I made it through our second dress rehearsal for the show I’m playing for this weekend, AND I slept great to boot. 

This morning, I’m continuing to attempt the covering of my scalp. 

This is AFTER attempting to style it.

I don’t know if a headband’s going to do the trick today.

Hat day it is. 

This hat will definitely bother the top of my ear where the acupressure seed is, but it’s the price ya gotta pay for style, I guess. 

Also, everything old is new again. I bought this hat in the late 90s and these boots in the early 90s, when I was going through a “Victorian” phase. 

The whole ensemble (minus the hat) 

for the curious

#bathroomselfie

Top and skirt are thrifted

I doubt I’ll make it much longer without shaving my head and starting in on old wigs until I get my new one. I had hoped to make it through this weekend’s performances, but that’s looking doubtful. Oh well… 

A New Hope

 Yes, that’s a Star Wars reference. You’re welcome, Matty… (And it’s St. Patrick’s Day, not May the 4th)

Happy St. Patty’s Day!

Flashing my bangs even though the 

rest of my hair is rapidly falling out. 

More on that in a minute.

I had an appointment with my oncologist this morning (Dr. Jones), and he got some really useful information from the genetic testing they did on me a couple of weeks ago. 

I’ll see if I can give you a comprehensible recap of the conversation. 

It appears that the cancer DNA has mutated and no longer possesses HER-2, but it does show signs of BRCA-1, which is interesting, since I wasn't born with that particular gene. The good news is, it shows two mutations: BRCA-1 and PICC-3CA and the same treatment hits both. And it's in pill form, not chemo. 

I’m pretty sure this is exactly what my cancer cells are doing.

I'll stay on Eribulin for 3-6 months, depending on 3 month scan, but here's feeling really good about future options. 

This is the picture Dr. Jones drew for me. It's a picture of the cancer cell with 3 possible receptors: Estrogen, Progesterone, and the GF is Growth Factor, which in my case is HER-2.

The center of the cell is the cancer DNA, which replicates itself and grows fast (tumor growth. Those are represented by the bubbles at the bottom (and the GIF above). 

My current regimen (Eribulin) is destroying the cancer DNA, regardless of mutations. 

There’s a war going on inside me at the cellular level.

Eribulin = Death Star

They've had me on Herceptin for ages, because of its track record in wiping out HER-2. (proven!) They’ll keep me on it just in case of microscopic traces of HER-2, and because once they take you off a chemo regimen, they don’t restart it.

Once the cancer outsmarts Eribulin- (expected in the next 3-6 months), I will start on a pill (not chemo) called Olaparib will target the genetic mutations they found in my blood test. 

I’m tolerating the Eribulin really well. It’s two weeks on, one week off, and it only takes 5 minutes to administer. I have felt so well, I was sceptical that it was doing anything… and then my hair started falling out. (This will be the THIRD time I’ve gone bald, for those of you keeping track at home. *sigh*)

It’s ok. It’s very temporary, and last time my hair grew back it curly, so fingers crossed. Meanwhile, I have an appointment at the Avera Wig Salon on Tuesday. Losing my hair still sucks, but not as much as the first time. Time to start searching for sassy salt & pepper wigs. 

Well, that was quick…

I don’t think I even blogged about my most recent treatment. Here’s what I posted on Facebook on November 11, 2022:

PET scan this morning. I had a bad feeling about this one, because I’ve been experiencing some seriously uncomfortable armpit pain on the right side, definitely related to my lymph node area where the cancer came back 4 years ago. 

Sure enough, there was evidence of uptake in that area, as well as the return of the glowy spots peppered throughout my spine. So basically, I’m right back where I was when I was re-diagnosed in October of 2018. 

So the bad news is, I have to change chemo regimens again. I’ve averaged about 15 months on each regimen, but my oncologist had hoped that we would get up to 10 years out of this one. 

The good news is, I don’t have to do this chemo (EnHER2) anymore. Which is fine by me. I have never felt good on this regimen (I started it just over a year ago), and the steroids I’ve been on to combat the nausea and fatigue have helped me gain a lot of weight rather rapidly. 

So now I’m going to a trio of drugs: One infusion - Herceptin, which I’ve had before. (I can’t tell you why. I thought once something stopped working you never went back) which I’ll do every three weeks, and two pills: Tucatinib (I’m calling this one ”2 Catnip”) and Capecitabine (Cape Sit a Bean. It’s like Cape Cod, but less fishy).

The pills will be taken  twice a day, one of them will be two weeks on and one week off. New side effects will be diarrhea and a less effective immune system. 

Dr. Jones is disappointed that EnHER2 didn’t last longer, but he has plenty of options available, and there’s always more research being done. 

So, time to adjust to a new normal. Hopefully I’ll feel a little better for a while. Maybe I’ll be able to lose some of this weight and fit back into my fun wardrobe again by this time next year.

That was 3 months ago. Since that time, I have lost 6 pounds of steroid/ menopause weight (Yay! 24 to go!) and excercised approximately 5 days 😉. I started feeling “all over body-achy” about 2 months ago. I started referring to myself as “potato.” I couldn’t roll over, lay down flat on the floor, get up from the floor (or bed. or couch), and recently my hip and another spot in my pelvis got pretty achy and I started walking very slowly. The bitter cold that swept in this week definitely didn’t help. 

I get scanned every 3 months to watch progression of disease. I got a scan on Tuesday, and was due to get a refill on one of the oral chemo pills that day, so I asked the doctor’s office to call me and just let me know if I needed the refill or not. (I’d rather not get it so that I don’t waste these stupidly expensive pills that Big Pharma pays for.) 

Anywhoo, I got a call from my PA that afternoon and could tell by the sound of her voice that it was time to make another change. She said, “Um… how ARE you?” As if to mean, “This scan looks REALLY bad.” She offered to give me narcotics for pain, but ibuprofen is taking care of things for now, and I need to be able to drive, so I declined. I was able to look at my Chart and read the report from the radiologist who read my scan, and it indeed looks pretty bad on paper. 

I met with Dr. Jones this morning, and he showed me the pictures from the scan. 

Left: Today. Right: 3 months ago

Remember after I fell quite dramatically last summer and I said that if you feel like everything hurts and you’re dying, a PET scan will confirm? (Oh wait, that’s probably on FB too. It was Aug 14, 2022 if you’re interested) Well, every black spot on the left side is a cancer lesion and a place that hurts - with the exception of the one in my brain and bladder (the scan measures glucose, and they both have a lot of glucose naturally). 

No wait! There’s good news… None of those black spots are in soft organ tissue. That’s really good. But Jones and I are both pissed that the oral chemo regimen did basically nothing. 

Incedentally, this is the first time that I’ve physically felt pain from cancer in the 10 years I’ve had it. 

So, the new plan is to hit those lesions hard with a systemic chemo called Eribulin. I can remember the name of it because I think we’re on Plan E and my ribs hurt. (Get it? E-RIB-ulin?) It’s a 5 minute infusion once a week, 2 weeks on, one week off. Side effects include nausea, hair loss (frick), neuropathy in fingers and toes, muscle or joint pain, and lowered immunity. 

So… basically the way I feel now, but with hair loss and vague nausea. Awesome. 

This was the closest I could get to inserting a GIF

We will also continue with Herceptin once every 3 weeks (the first of my two weeks on the other drug). 

This drug is known to dramatically reduce and heal tumor activity quickly, but then it plateaus and stops working again. Once there are any signs of regression, they’ll change things up again. 

So that’s where things stand today. Mentally and emotionally I’m doing fine, as are Matt and the kids (oh, I forgot to tell the kids…). this is just another turn in the road for us. Two weeks from today is my 10 year cancerversary. We’ve been at this a while now. 

I’m sitting in the infusion center as I type this. We had a major snowstorm that stopped the city for a couple of days this week so I’m making up lessons Friday (today) and Saturday this week. After I leave here, I’ll go to USF, teach a few lessons, go to musical rehearsal, then Matt & I are going to Improv Falls tonight to enjoy a little ridiculous fun with our theatre community. 

For those keeping track of my busy-ness level: I am teaching about 27 students a week, involved in 3 shows, and opening a new Multi-Teacher Studio June 5. So, you know… the usal. 

Port woes

 Oof! What a day!

It was my day for an appointment with my oncologist and infusion, which is standard procedure for me every 3rd Friday. I checked in at the lab at 10:30 am, expecting to be home by about 1:00. 

Had a few little glitches in the day, however...

So, I have a port in my upper chest, just under my left clavicle, which makes for less scarring in my arms. They use this for needle pokes of all kinds: blood draws, infusions, and even anesthesia when needed for things like a routine colonoscopy. Occasionally, a port gets temperamental and doesn't work the way it's supposed to. Sometimes the body treats it as a foreign invader and the tube, which goes straight into the aorta, will get covered with a myelin sheath. I've had this happen a few times. Sometimes they can use a blood thinner to flush it out, sometimes they inject a solution into the tube that sits there for a while and works like a drain cleaner, sometimes they have to do a short surgery to remove the port and replace it with a new one. In the almost 10 years since I was first diagnosed, this is the 4th port I’ve had. It was replaced last June.

This morning, my port worked perfectly when the phlebotomist, Donna, accessed it in the lab. They leave it accessed when you have an infusion that same day. I went on to my oncology appointment, and mentioned to the CNP, Nancy, who was my provider today that I still have a gross open wound from the port they took out last June. (That was 7 months ago). This is not the first time I’ve mentioned this problem, but she called a surgeon, Dr. Bryan, to come take a look at it, and the surgeon said, “Nope. That’s not right.” 

As I suspected, the sutures from that surgery never fully dissolved, and it was not going to heal on it’s own. After poking around a little on it in my infusion room, she said to head across the hall to her office after infusion so she could numb me up properly and dig in a little deeper. 

Meanwhile…

The infusion nurses, who are straight-up PROS at using ports, could not get my already accessed port to give any blood return. My nurse, Lindsay, tried every trick in the book, even some I’ve never done before, and NOTHING! It was definitely plugged. She used Heparin to flush it, out, to no avail, so they called in an Rx for CathFlow, which Lindsay described as “Port Drain-O”. It took a while to arrive from pharmacy, then it had to sit in the cath line for 30 minutes minimum. I tried to hop across the hall to surgery to have Dr. Bryan pop that little granuloma out while I waited, but she didn’t want to be rushed. So I went back and got some work done instead.

Try #1 after CathFlow didn’t work at all. Try #2 fifteen minutes later was also unsuccessful. I suggested we could just use a vein. I have really big ones. Lindsay was fine with that, but kept trying the port a few more times. Nothing. Time for an IV. My veins were happy to give up all my blood, and infusion went smoothly for the next 45 minutes. About 20 minutes in, Nurse Marcia popped in and said she wanted to give the port a try. Got it first time. What a rock star. I told her she should go out there and strut around in front of Lindsay a bit. To her credit, she didn’t. That’s probably why I’m not a nurse. 

Anyway, I had an uneventful infusion, then popped across the hall to surgery. By now it was 3:00 pm, on a Friday, mind you, and I was the only patient left in their office. Dr. Bryan and her nurse (Dang. Can’t remember her name!) took care of my gross wound. I got to see the gross granuloma (which was almost an inch long that looked kind of like a garden slug) that had encased the tiny shard of plastic (maybe 2mm) that the sutures had melded into. (No pictures. You’re welcome.) She put in non-dissolvable stitches, which I’ll have removed in a couple of weeks.

So, I finally made it out of the Prairie Center around 3:30. I stopped at the drugstore to get some appropriate band-aids for the next week. Then as I was driving past USF, I remembered that I need to talk to my pal, Hailey about something, so I pulled into a loading zone, shut my car off, but put on my hazard blinkers, and went in and visited with Hailey for a while. Of course, it lasted much longer than it should have, and by the time I got back out to my car, my battery was dead. 

Back up a hot second… my car has been starting hard in the cold the last few days, and I knew my battery was probably on it’s last legs, but why take care of something proactively when you can wait to get stranded? 

Now, we have AAA for this very purpose, but I didn’t have my card with me. Matt was at a Christmas party already, but kindly took a picture of the AAA card and texted it to me. Then I remembered, “I’m on campus! Campus security will do this for me. I don’t need to wait for AAA.” So I walked the 50 feet over to their office, and they happily took care of charging me up so I could go. 

At this point, it was 4:30 and I didn’t dare shut my car off. I drove over to an auto parts store, that was advertising free battery testing and asked if they would test my battery- and whether I needed to shut off my ignition. I did, they tested my battery, confirmed it was “bad,” then they put the charger back on my battery while I called the closest mechanic to see if I could get a new battery put in right away- not really thinking that it was almost 5 pm on a FRIDAY.

Three cheers for Tires Tires Tires, for squeezing me in at 5 on a Friday and sending me on my fully charged, merry way! 

And the biggest hero of the day was Matt Morrison, who took down and put away all the indoor Christmas decorations while I was gone. Yes, he went to a party without me, (I wasn’t invited and it was sportsy so I was fine with that) but he cleaned up Christmas, which is one of my least favorite things to do ever. 

And I don’t have any pictures of all of these adventures, but I was stopped in my tracks by the winter scene when I first stepped outside this morning. The magic was all gone by the time I got home, but here’s a nice picture of my pretty little neighborhood.

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!