It's Been 10 Years...

Wow. Cancer-versary #10.

On this day ten years ago I received The Call. The call where you hear the word "cancer" and the rest of the conversation sounds like the teacher from Charlie Brown. You can read the post about that phone call here and/or how I reacted the next day here. 

Diagnosed with Stage 3 breast cancer, that call was the beginning of a JOURNEY that would eventually end with 20 weeks of chemo, 38 rounds of radiation, and more surgeries than I could keep track of. (Side note, when I fill out forms at doctors offices today and they want this information, I just laugh and write "too many to list"). The percentages weren't in my favor. And I know you're not supposed to look at statistics but I'm a science major so I couldn't help it. Statistics said my odds of surviving past five years were 65% (give or take).

And then... I made it to five years, and six, and seven (and wrote the first of my "TED Talks." If you have the time, you really should read it. It’s admittedly long, but contains a lot of good updates, information, and even explains “cancer-versary.” It is also an on-going thank you to the people I can never repay). 

2020 was a dumpster fire on so many levels but it marked eight years.

Last year... NINE YEARS. One year away from the magical "ten year" cancer-versary. Each year I celebrated the milestone while also dreading my annual scans, afraid that my luck had run out. But also, totally prepared for the bad news that I was sure was coming. 

So imagine my... surprise?... when I realize that it is 2022 and I have hit the ten year mark.

Ten. Motherfucking. Years. 

And my scan from this summer came back CLEAR. Fuck you, Cancer!

"When are you writing the book?" It's the question I get asked a lot. If I don't get an invite to present a TED Talk soon, I will have to sit down and start writing. It's now my five year goal. I finally came up with the perfect title (well, a friend came up with the title... I'll give him credit in the author's note I swear). It's also something that I want you to know: "It's Okay to Cry in the Shower."

And that is this year's advice.

Believe me, there are lots of reasons you might find yourself crying in the shower. You know what? It's OKAY! There's a story very few people know and I'm sure it will be a chapter of that future book. It's the day, maybe 4 weeks? 6 weeks? into chemo, where I just couldn't get out of the shower to go to the hospital for my infusion. Could not. I was DONE. At the time I did not care that it meant I would probably die. I did not care that it probably made me a bad mother for not caring if I died. Because I was DONE with all of it. Done with doctors, and treatments, and feeling like I was dying. 

Obviously, I did get up the next day and I went to get that round of chemo. And all the rest of them. I powered through what would become almost another year of treatments and surgeries. And even more years of scans, and meds that made me crazy, and follow-up appointments. People called me: Warrior. Inspiration. Survivor. Badass. Believe me, I will take all those labels and proudly own them. But I want you to know this: while you probably think it's great that I got up the next day and continued my treatments... I want you to know that it was completely okay for me to say that I was done. 

2022 has been a GREAT year for me and my crew! Weddings and grandkids. Life, love, and laughter. TRAVEL. Concerts. Travel for concerts. Sunsets and moonrises. So much time spent on my lanai with people that I adore. I say it every year: life is too short my friends. It really is. And I've been trying to live mine to the fullest. (See some pictures at the end of this post). 
 
                     

This past week I got to raise a glass with just a few of the people that got me through it all. And I spent this weekend celebrating with my kids and grandkids. So many people have said... "wow, you look great. You know what? You look HAPPY." Because, guess what? I finally am happy! Don't wait for "some day" my friends. You should be LIVING life...to the fullest...EVERY DAY. Always.

Without further ado, thank you for indulging a girl her annual TED Talk:

Advice from 2013:
Be happy. (Funny that I wrote this in 2013. That's a whole other chapter of the book).

Say I love you. 

Be thankful. 

Don't take anything, or ANYONE, for granted. 

Do what you love. 

Don't wait for "someday." 

Oh, and eat dessert first.

Edited in 2015 to add:

Go because you can. TAKE THE DAMN TRIPS.

Because why not?! (Make this your mantra!)

WEAR SUNSCREEN!

Edited in 2019 to add:

Get all the tattoos.

Watch ALL the sunsets.

Edited in 2020 to add:

Re-connect with your people. Take the time, have the conversations, enjoy the laughter.

See the shows, watch the concerts, go to the games.

Don't accept BULLSHIT. 

And it bears repeating: FIND THE PEOPLE WHO MAKE YOU LAUGH. And who love you unconditionally. 

Edited in 2021 to add...

Pink songs helped me through a LOT over the years. But this one? Damn, I don't think a song has ever spoken to me so much. And so that's the advice for 2021:

"Stay unfiltered and loud.
Be proud of that skin full of scars."

I wouldn't trade mine for the world. 

And so, my friends, please take a moment and raise a glass, eat the cupcake, read the book, and chase the sunset. Do it for me, but do it for YOURSELF. I'll leave you with this quote, which finally became a tattoo: 

"Don't be afraid of death; be afraid of an unlived life. You don't have to life forever, you just have to live." --Natalie Babbitt, Tuck Everlasting

               

 

  

Bone Scan Aftermath

While I was training for the Iron Girl, I noticed that my knees really hurt while I was running (or rather, attempting to run). And some runner friends suggested that it was my shoes, or my lack of training, but none of those felt like the real answer. As it turned out, I ended up walking the run portion of the triathlon, and I survived.

But I was having some major pain and couldn't really figure out why.

At the end of August, I went to the next of my "every 4 month" appointments and mentioned this joint pain (and other symptoms) to my oncologist. Who kinda laughed while saying, "well, duh." Because all of the symptoms that I'm sitting in her office complaining about are all listed side effects of Anastrozole, which is the med that I'm taking every day instead of Tamoxifen. 

(For those that haven't heard me tell the story, Tamoxifen was making me insane. Actually, certifiably insane. Wanting to run people over with my car and I'd get away with it insane. I stopped taking it cold turkey after six months and DEMANDED she give me something else. Hence, how I ended up on Anastrozole).

Now, I am so far into this process that I don't actually look up most things online, especially side effects of medicines that I'm supposed to take. Tamoxifen was making me crazy and Anastrozole didn't. Enough said. I could live with almost anything else. But once she had said this I did go home and look up all the side effects. WOW, what a list. And YES, this is pretty much how I feel. Super.

Serious side effects:

• sudden numbness or weakness, especially on one side of the body;
• sudden severe headache, confusion, problems with vision, speech, or balance;
• a bone fracture;
• swollen glands;
• feeling short of breath;
• nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes);
• swelling in your hands or feet; or
• severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
• Less serious side effects may include:

Less serious side effects:

• numbness, tingling, cold feeling, or weakness in your hand or wrist;
• problems with your fingers while gripping;
• hot flashes;
• joint pain or stiffness;
• depression, mood changes, sleep problems (insomnia);
• cough, sore throat;
• thinning hair;
• mild nausea, vomiting; or
• back pain, bone pain.

Again, super.

So, the doctor decides that I need a bone scan because of the risk of osteoporosis in patients on Anastrozole. Can I just say, EASIEST scan EVER. Why can't everything be like that?!

And, I just received the results of the scan. Which probably should not have surprised me. Because it's bad. OSTEOPOROSIS...to such a degree that calcium and vitamin D are "not going to make a dent." So now I get to have a twice a year infusion of some drug that will hopefully counteract the bone loss. Yippee, more infusions. 

And I will start these in January because they are, of course, EXPENSIVE. And I'd like to at least get one of them covered by insurance per year. Good times, indeed.

Cancer...the gift that keeps on giving...

The Beginning of the Scans...And the Waiting...

There hasn't been a lot of news to share recently. I survived the food fest that was Vegas at Thanksgiving. I'll have to do a post showing all the pictures of all the yummy food and fun we had. It was a MUCH NEEDED and relaxing vacation with the family.

I still have to finish my "I'm so Thankful for..." posts. November ended before I could finish, and then I promptly forgot that I had many more gratitude posts to write (chemo brain!).

Today, however, marked the first "post-treatment" scan. 

Now, before you get too excited for news, you should know better. It's all about "hurry up and wait" as the follow-up appointment to discuss the results isn't until the end of the week. Awesome scheduling on their part. Whatever. 

And, as I discovered today, it's HIGHLY likely that today's scan was NOT scanning the parts with cancer, but every other part of my body that lit up on previous scans (pre- and mid-treatment) to see what's going on with my lungs, liver, kidneys. The technician was pretty convinced that chest and armpits would not be seen in the scan. UGH! Guess we'll be having that discussion with the doctor. I kinda thought today was a full-body, see everything you can, scan. Guess not. Did I already say UGH?!

But, lest you think I've lost my sense of humor, let me tell you about my day anyway.

I arrive at 9:15am for an 11:00am MRI. This is because the doctor has requested that I get a blood draw before the MRI, and so that the anesthesiologist has time to get all the IVs hooked up. (Yes, I finally discovered that I would not have to remember my trip through the scary tube of death...I could be completely under while it was happening. Thank you insurance company for paying for today's adventure!). In the reminder phone call, the doctor's office says, "just pop on by before your MRI for a blood draw." To me, that means pop on in when you get here and we'll draw your blood in a hurry and get you on your way. HA! What was I thinking? I should have known better! I've been dealing with these people for over a year and they are NEVER speedy...or on time. I was spoiled by the on-time percentage for radiation and forgot what a cluster the rest of the place was, especially on a Monday. So, after waiting 10 minutes just to CHECK IN, it's a 30 minute wait for the blood draw, which makes the MRI people really happy, by the way. I consider wandering the hallways of the hospital looking for anyone that could draw the blood for me. Keith even considers doing it at one point (and he probably could have after watching it done so many times). Four vials of blood and 40 minutes later, I'm on my way to check in for the MRI.

And this is where the day gets kind of interesting. And still has me considering writing a letter of complaint to the hospital. Now, I normally get awesome and friendly service from everyone not associated with a billing department. I only complain about time delays, I don't really hold it against them because everyone is still so pleasant. However, today was definitely an exception.

So, I check in for the MRI and am waited on by the RUDEST. GUY. EVER. Seriously. If he was my child, I would've smacked him. He's rude to me, he's rude to his coworkers (which actually pissed me off more)...he has me saying snarky things under my breath because I know he will not appreciate my humor today. And it just might make the situation worse (see, I am able to keep the humor in check when the situation necessitates it). I'm trying really hard to chalk it up to a bad morning on his part...maybe he just found out they're laying him off...I don't know. But then I realize that it's not just him. The MRI technician is rude to the anesthesiologist, the anesthesiologist and the nurses do a very poor job of communicating nicely to each other. All of this anger right in front of me, before a procedure I'm a little terrified of. Did the hospital just cut everyone's salary? WTH was going on there this morning?

Angry energy aside, there were some entertaining parts:
I was asked no less than 26 times today about my port and where it was placed and what kind it was. Which was removed in June. Which I've mentioned each and every time I've been in the hospital for a procedure since then and been asked the same question. Which everyone claims they will "update in my records." No, you may not administer drugs and/or do blood draws through the port...IT DOESN'T EXIST. How tough is this?!

The anesthesiologist could probably have given Hans and Franz a run for their money. He must have his scrubs custom made. Biggest muscles I've seen in a long time on someone not The Rock.

Said anesthesiologist kept forgetting what required questions he had already asked me (allergies, etc.) and was repeating himself a lot. Does not really inspire confidence in someone in charge of making sure I come out of this alive.

I am wheeled all the way down to the MRI "station" and only then is it discovered that no one has the drugs I'm supposed to get. And they all look at each other like they can't figure out who's supposed to be in charge of this. Again, really inspiring confidence.

A couple of positive takeaways from the day:
Hans/Franz did the IV himself. And he was good at it. And he thought to bring pediatric IV needles, and recommended that is what should have always been used on me. Thank you for this tidbit! Will be asking for these from now on!

Keith and I were sitting outside the oncologist's office (in the lounge area...anyone who drove me to radiation will know where I'm talking about) waiting for the blood draw. (All the seats inside the office were taken). At the table next to us was an older gentleman who had purchased a vitamin water and was waiting for his turn to be called also. I have my back to him, but Keith is watching him struggle to open the bottle. And Keith knows this because it is the same look and struggle that I have opening these bottles (damn, do they superglue the lids on these things?!). And chemo kills any hand or joint strength you might ever hope to have, so he knows that this guy is never going to open it. So he stands up, walks over to him, and asks if he can open the water for him. And the guy is so appreciative (because he's probably desperately thirsty like I am). I loved the whole interaction. Hubby was being nice to someone, not just me. I realized that I wasn't the only one in this situation. And this gentleman accepted the help (which could have seemed offensive or intrusive). Lesson to us all: offer help if you can give it. Accept it if you need it!

Stay tuned for news and results...will update when/if I find out anything!

In Which I am Thankful...To Be Here

Continuing the gratitude posts today with some quick thoughts on how much difference one year can make.

Last Thanksgiving, we were in Las Vegas (as usual) to celebrate with family. But there was nothing usual about that trip. Don't get me wrong, I was grateful to be there...grateful that I had forced the doctors into letting me go (or maybe I forgot to mention that I was going??), grateful for my dad who paid for the airline ticket so I wouldn't have to sit in the car for 17 hours each way while trying to heal from a 2nd surgery, grateful for family that was there and especially for my "adopted" family that was able to join us. 

But, in the back of my mind, my thoughts were swirling. What if this is the last vacation that we take together? I should be making the most of this vacation, but how? I was making an inventory of all the things I was going to miss in my children's lives. What if the treatments don't work? What is going to happen when I start chemo in a couple of weeks? What if the scans never come back clean? (They still haven't...fingers crossed for the upcoming one in December). What's going to happen to my kids? My family? Me????

And to top it all off, I was exhausted during this vacation. I napped quite a bit, I couldn't walk everywhere like I thought. I hadn't even started treatments (other than some surgeries) and already I was feeling the effects of this angry cancer in my body. (Little did I know that this exhaustion was nothing to what I feel on a daily basis now, but at the time, I really did feel "sick." And maybe it was simply because doctors had put that "C" word in my head).

Fast forward to this Thanksgiving. I'm back here, in Vegas with the family. We are ENJOYING every minute of this trip. Food, shows, the gorgeous penthouse we were upgraded to. ENJOYING. EVERY. MINUTE. (This is the view from the "reading room").

And that's what I'm thankful for today...that I am here. That the HORRIBLE last year-plus that I have endured has kept me alive to enjoy another Thanksgiving. That has me looking forward three weeks when we will be off to Hawaii for a return to our annual Christmas vacation, which I have missed desperately throughout all of this.

I am grateful for the doctors/surgeons that I LOVE and that have taken such good care of me. The nurses that laughed with me. The receptionists that always knew me by name and commiserated with me about the teenage boy. My favorite pharmacy gal Megan who literally saved my sanity.

I am grateful that I trusted these people enough to let them do almost anything they wanted to do to my body. And I'm grateful that "Bring. It. On." is actually a good attitude to have and that it served me well.

I am grateful that I survived it ALL. Everything they threw at me. 

And as I head out to enjoy yet another amazing meal in Vegas, I will leave you with a thought that I stole from one of my favorite author's Facebook posts this morning: I am grateful for the resilience that comes from having scars!

And So The Follow-up Appointments Begin...

First in a long line of follow-up appointments began today with a mammogram. Because, get this, I'm "past due for one." And they're "concerned." 

So, I actually tried not to laugh at the poor nurse assigned to tell me this. Because, I have to say, that I kind of think with all I've been through, I should get a pass on the mammogram for awhile. Or at least, get a pass on being berated for not scheduling the appointment.

To be fair, they did clarify that they only wanted to do a mammogram on the right breast (non-cancerous side), so I did see their point. Sort of. Really wasn't worth the effort to explain the joke. And this is definitely not the hill I am going to die on, so I'll save the energy for another battle.

And honestly I'm well past the point of caring about medical procedures, so why not have another one? Yippee!

It was quick and not-so-painless. Bonus points to me today however because I did NOT pass out (like I did last time). Long wait while the doctor looked at the images. I brought a book to keep me occupied (this is not my first rodeo). I will admit that there was this gnawing in the back of my head about what they might find, and I would not have been surprised to be told there was something. Because I'm just that lucky. 

But, miracle of miracles, they deemed the results "benign" or "clear" or whatever term you prefer. And they sent me on my way with a letter saying as much. (Of course, as I told Keith, I never really believe these machines any more since I've had more than one in the last year not actually give accurate results, but it's the best I'm going to get). 

In the next 30 or so days I have no fewer than 10-12 appointments/scans. Next up is a meet and greet with a new surgeon. Scans regarding parts with cancer to come soon...it takes time for radiation to dissipate and make the scan worthwhile. Fun times ahead! Stay tuned!