Past and Present

Cancer update:

My first round of chemo has gone remarkably well. Unless they gave me a placebo, which I wonder because I'm feeling really good, all things considered. Minimal nausea, aches controlled with OTC meds, and TIRED. I'll get up and do things for about 30 minutes, then need a rest. But I'll take that over the expected chemo side effects! So Thanks A Million for your prayers! I'm sure that (and not a placebo, which would be highly unethical) is why I'm feeling pretty OK this week.

Oh! Sounds like I'm not going to lose my hair this round, either!

Fun Stuff:

I'm really tired of thinking about and planning for cancer. It's consumed our lives for the past couple weeks. So this is pure fluff, of the best kind. Get ready for all the feels and have fun with this.

Recently, I was looking through a scrapbook from my first couple years on earth. And I saw so many pictures of me and my dad that mirrored pictures of my brother and his kids. Not surprising, since we all want to capture specific milestones, but it was sweet to see the similarities.

Here are a few examples:

Backpack babies. My brother takes it up a notch with a front pack and a diaper bag.

 

Vacation Baths in the Sink

 

Canoeing

 

Fresh air & red blankets

 

Walking with Dad (Dad and me, Dad and his oldest granddaughter)

 

Taking responsibility or heading for disaster? (Me pushing Jennifer, Jennifer's oldest pushing Jason's oldest)

 

WRESTLING!!! (Dad with me and Jennifer, Jason with all three of his kids; and, yes, the bedding, wallpaper, and curtains in my parents' room were all the same pink and red gerbera daisies! Maybe this is why I love gerberas...)

 

Stories in the Red Chair (If this chair could speak, the stories it could tell! It's over 50 years old and we all have fond memories of it.)

 

Ahhh! Don't you feel all warm and fuzzy? Enjoy your weekend.

Meet My Army

We have a plan!

OK: in case I have not said this directly, based on imaging, my ovarian cancer is back. The first step is chemo for nine weeks, then possibly surgery, and then more chemo.

While defiance is my favorite cancer strategy, I am pretty exhausted already from the last six months of Lynparza, so we’ve decided I am going to take a leave from work during treatment. I felt like I had to choose between work and all the other things in life, so it ended up being an easy choice. Today was my last day.

Chemo starts on Tuesday. Yes, Valentine’s Day. Which is fine - we are not big fans of Valentine’s Day.

I’m OK with this. I looked at the CT images, and to my untrained eye they are UGLY. Mostly fluid, but the images look like a cloudy mess. So let’s get on this! Plus, I have a trip planned with a friend at the end of March, so if we start Tuesday, I’ll be at my best when we get together. Priorities!

Prayer requests and possibly some inspiration at the bottom, so feel free to skip down if you’re not interested in the drugs we’ll be using to fight this round.

If you’re curious, here’s what I’m getting:

My chemo army is not made of marshmallows. 

Neither are Peeps. This I know from many campfire experiments.

Chemo Drug #1: CARBOPLATIN

This drug is in the platinum category, so I envision him as my knight in shining armor. I believe there is real platinum in the IV bag! It fights cancer by damaging the cells’ DNA so they cannot multiply. I suppose we could say it is a little like birth control for cancer cells. It also effects healthy cells that multiply rapidly, like hair and blood, so I’ll likely loose my hair again and my blood counts will drop.

I had this drug way back during my initial chemo. He is effective but brutal. Last time, this would put me squarely on the couch for three days. I also developed an allergy to it, but in the true maverick nature of cancer science, we don’t really care about that! There are ways around it (allergy-suppressing pre-meds and a slooooooow infusion rate). We are going back to this drug because ovarian cancers in people with BRCA 1 mutations (me) are “exquisitely sensitive” to platinums.

I’ll get an infusion of Carboplatin once every three weeks.

Chemo Drug #2: GEMZAR

This drug is new to me. We’ve always avoided it because it tends to be tough on platelets, which are my most quickly depleted blood cells. Since we call it Gem for short, I imagine this one is shiny and flashy. And maybe a bit dodgy. It prevents cancer cells from making and repairing DNA, so they cannot replicate. Similar to Carbo, but a different action. Also similar to Carbo, Gem hits healthy cells that multiply rapidly, like hair and blood.

I think this drug is fairly tolerable. I’ll get an infusion the first and second week, then have a third week off.

Chemo Drug #3: AVASTIN

This is my pirate drug (as in “AVAST, mateys!”). I’ve had it before. It’s actually a targeted therapy rather than a chemotherapy, so it’s generally very kind as far as side effects go.

This drug is called an - are you ready for a lot of syllables?! - anti-angio-genesis drug! 

If I can get a little geeky for a minute, I think this is SO COOL. Angio = blood vessel. Genesis = beginning or creation. Angiogenesis happens when we need more blood flow. If you’re an athlete, your body will create more blood vessels for your heart and muscles in order to bring more blood to those super active areas. If your heart vessels are mildly clogged with plaque, your heart will create more vessels in order to supply the adequate amount of blood to the heart. Isn’t that cool? Our bodies are incredibly adaptable.

So ANTIangiogenesis means Avastin inhibits the formation of new vessels. Cancers tend to be greedy and build a big blood supply to themselves. When Avastin makes this harder, cancer gets less blood and therefore less fuel, and we essentially create a famine for the cancer.

I’ll get an infusion of Avastin once every three weeks.

Then there are the supportive meds:

Anti-Emetic

Emesis is a fancy way to say vomit. I’m not sure why we can’t just use one word, but that’s medicine. We LOVE this class of drugs because they remove most of chemo-induced nausea and vomiting (thus ANTI-emetic). I’ll get one via IV before starting, and I’ll have a few kinds of pills to see what works if I need anything at home.

I'm also resurrecting this gift from Mike:

Yup, it's a horse's feed bucket, and it's very handy to have, just in case...

Steroid

Probably dexamethasone, because she seems to be the darling of oncology. Steroids get a bad rap, but this darling does a couple things for me that I love. First, it reduces the likelihood of an allergic reaction. Second, it gives me ENERGY for about a day and a half. I’ll be a little jittery, but it’s a beautiful thing to have energy before a few days of feeling awful.

Benadryl

This will also help prevent an allergic reaction. It usually doesn’t make me too sleepy, but Mike says it makes me slur my words. But I sound quite clear to myself and the nurses are professionally neutral, so…

Here's what we want the drugs to do to the cancer:

I've used this image before, but I just love it.

That’s pretty much it. Maybe more, depending on what kind of side effects I have. The first cycle is usually the worst because you figure out what the side effects are going to be. Then you create a plan for the next cycles to better manage the side effects.

Prayer requests

I have a long list today. But there are a lot of you. So choose one or two to focus on - between all of us, I am sure everything will be well-covered.

That these drugs will be effective.

That we’ll be able to get around my allergy to carboplatin.

That my blood counts will be minimally effective and recover well.

That these drugs won’t beat me down too much - for strength and energy.

That side effects will be minimal.

That Mike will have the strength, patience, and peace to walk through this with me.

That our spirits will be encouraged and we will not be discouraged on the tough days.

"It's not the size of the dog in the fight, it's the size of the fight in the dog." Mark Twain

I was praying about this recurrence a few days ago. I’m tired. Tired in general and tired of fighting. I keep choosing to trust God, leaning into Exodus 14:14: “The Lord will fight for you, you need only be still.” While I was praying, I had a new thought. I think this might be what some call God speaking to them. Nothing audible, but an idea that was new to me and in line with biblical truth, so I would attribute it to divine inspiration. 

Anyway, here’s my new idea: In the Bible, King David was at war pretty much his whole life. After him, his son Solomon had peace throughout his reign. So my prayer is that this battle will be effective, and then I will have several years of rest before having to fight again. I am looking forward to a break after this.

Here's to sweet victory over stinky cancer. And over the dark shadows it throws.

Thank you for all of your support, past, present, and future. We need you and we love you.

A Not-So-Funny Comedy of Errors

It's been a weird, somewhat wasteful, and very misdirected week.

Based on texts, emails, and social media posts, most of you probably have most of the story. But since it was confusing for me, Mike, and the medical professionals, and since I'm still getting lots of questions, here's the full update on my week so far:

Backing up a bit, I've been feeling "off" for a couple weeks. It started with some annoying-but-not-bad back soreness. Probably just age/fitness/full life stuff, but it reminded me of the back pain I had in nursing school. Back then, I wrote it off as "nursing school-itis," in which one experiences symptoms of each major disease studied. At the time, we were learning the cardiovascular system, including that in women the signs of a heart attack are not always the classic chest and left arm pain. Sometimes back pain is a sign. I was having back pain, but I'd had a recent physical without any risk factors for heart disease, and, ultimately, didn't have a heart attack. In retrospect, it was a symptom of the cancer we'd discover several months later.

Anyway, this feeling of "something's not right" has been growing over the past week, along with my fatigue. It's been frustrating and scary. Last Saturday night, I started having abdominal pain. It got worse on Sunday afternoon, so we went to the Emergency Department after the Super Bowl. Through the pouring snow, which was beautiful.

We did a lot of waiting, during which time I took the new cool selfie: legs and feet.

At the ED, they decided on a CT scan. The radiologist saw a 4cm solid mass next to a 10cm abscess (sack of infected material) in my left pelvic area. I didn't have symptoms of infection, but this is concerning because if it ruptured and that material spread all over, I could get REALLY sick.

They consulted with the on-call surgeon (who I know and trust - it's so nice to work where you get care). He said it was too complex, especially with my ovarian cancer and several previous related surgeries, and it would be better for me to go to the hospital where my gyn oncology surgeon works.

However, that hospital didn't have a bed for me until morning, and the ED was slow, probably due to the snowy night. So Mike went home and I stayed the night in the ED. They mostly left me alone, so it was reasonably restful.

Monday morning I had my first ambulance ride! No emergency, no lights and sirens, just transport between hospitals. Still snowing, but the roads were fine. And, if you can believe it, I didn't take a picture! I was pretty tired. We can also blame that on low blood sugar since I hadn't had anything to eat or drink since 4pm the night before.

Once settled in my new room, I waited. And waited. Mike came mid-day to wait with me. My surgeon and his team reviewed my case in between their scheduled surgeries. They decided it would be best to have Interventional Radiology (IR) drain the fluid collection before surgery. Then we'd know if it was infection or something else - like cancer.

All day we waited for IR to fit me into their schedule. Which means I couldn't eat or drink. I was getting pretty thirsty!

At 7pm. it was decided that they'd do it Tuesday, probably in the morning. So I was able to eat and drink, and REALLY enjoyed this delicious smoothie.

Late morning on Tuesday, we learned that IR wasn't going to do the procedure because they couldn't see any fluid collection on the CT. Hm... miracle? Fun to consider. But, in the end, a mistake on the part of the ED radiologist, who misread an area of enhancement and/or my colostomy as an abscess rather than inflammation or old surgical changes. He or she hadn't compared my scan to previous ones (sometimes the on-call rad is reading scans from home and cannot access previous images). 

This led to getting more images transferred from one hospital to another, and multiple docs reviewing my CT scans from the past year. Final determination: no fluid collection, but there is a 5-ish cm mass (cancer), and inflammation from the mass in the area. The pain is from the inflammation, which is affecting part of my small bowel. 

This is all stemming from one of the areas we've been watching since I had a recurrence last July. Happily (amazingly), no other areas were visible on the CT, so the Lynparza has been effective in other areas, just not in this one.

{BTW, don't worry, my docs will make sure the misread gets back to the right people. and I work with their co-workers every day, so I may bring it up - in which case, they'd probably review the images with me, which I'd really like.}

So, again, I could eat and drink! Such luxury! And still LOTS of downtime to enjoy the city view from my room on the 11th floor.

I also did tons of sleeping because we were managing my pain with IV dilaudid (a narcotic) and that made it HARD to stay awake and concentrate on anything. They kept me until this morning for pain management and observation. Even though the original diagnosis of abscess was clearly incorrect, they wanted to be super sure before sending me home. This morning we switched to regularly scheduled doses of ibuprofen with dilaudid only as needed, and that made a big difference, so now I'm having almost no pain and feeling like I'm ready to re-enter the world.

Mike picked me up at 10:30am and we high-tailed it out of there. Again, we were accompanied by snowfall. We made a couple stops for food and meds, and then I went to bed for a few hours of uninterrupted sleep.

Since I'm feeling well, I plan to work a half-day tomorrow and all day on Friday. As long as I'm not in pain, nothing is different today from last week, other than knowing that there's a rogue clone of cancer. And I'm glad we know now instead of in a month (when I was scheduled to have a CT), because we can act before it gets bigger.

Overall, the hospital stay seems pretty unnecessary. But the ED visit was justified. In hindsight, the best thing would have been to listen more closely to my body and have had the CT through normal channels last week. That would have avoided all this hubbub. Oh well.

What's next is still TBD. Chemo for sure - probably one I haven't had before plus one of the original drugs I had, which worked really well initially and BRCA mutations (me) are typically "exquisitely sensitive" to this type of chemo. The question is whether we do surgery right away or after I've had a few cycles of chemo. I'm leaning toward chemo first, which would make surgery easier or even unnecessary (assuming the chemo works). I'll continue talking with my docs this week and next and we'll get a plan in place.

I'm doing OK with this. One of the perks of being in this chronic situation is facing familiar territory. I've done these things before. They're not easy, but they're often effective, and they've bought me more years than initially anticipated. And new treatments are being developed all the time, so I feel like I still have several options open to me. Monday, my surgeon, who we used to call Dr Doom & Gloom because he wasn't very hopeful initially, seemed confident that I will have the years I still want out of life.

Last night was kinda rough, both with pain and the emotional fallout that comes with news of a recurrence. But I keep re-centering on my trust in my sovereign God who is in control of this. I know Christ is greater than my cancer and I've seen so much good come from all of this. I'd love to be strong and healthy again, but I'm OK with this, too, in large part because all of you love and lift me up with your prayers and encouragement and love. The Bible says weeping may endure for the night, but joy comes in the morning, and that was definitely true for me today.

So thank you again, everyone, for all of your love and support! We appreciate you so much.