And We All Shine On

Dear Milo,

You've made your first trip around the sun! The thing is, Critter, you shine brighter than the sun ever could.

 

I hope you always feel how much you have been loved since before we could even imagine who you would turn out to be. I hope you always know that you have been wanted and dreamt of and hoped for since long before I even knew your daddy. I hope you always understand that you make us so incredibly happy, proud, and joyful and that you have blessed us beyond measure. I hope many things for you, but mostly I hope you have love in your life; and you will because your daddy and I love you more than we could ever express.

We've learned so much from each other this first year, or at least Daddy and I have learned so much from you. We've had adventures and mishaps, routine and anything but, blissful happiness and frustration like I'd never experienced. We've had literally thousands of bottles fed, dirty diaper changes, hundreds of hours spent pumping milk, and typically two wake-ups per night.

You have the sweetest, most generous smile and the kindest eyes but you've got a stubborn streak and challenge that stereotype about "Downs kids always being happy." You have a tendency to startle easily at loud talking or laughter but your favorite fun is banging two toys together to make maximum noise. You have an independent and adventurous spirit but nothing makes you happier than seeing Daddy walk through the door every evening.

This hasn't been the easiest year. We hit rock-bottom the first time we walked through our front door without three-day-old you; but we got through it. We are learning as we go when it comes to things like advocating for you to receive more therapy; but we're managing. The worst possible thing about my diagnosis is how it could affect you; but I promise as long as I have a breath in me I will never stop fighting for more days with you.

But it's been an amazing year. You've been healthy and happy and growing and developing and learning. You've been surrounded by family and friends who love you. You've been the best thing that ever happened to me and Daddy.

I can't promise what the future holds and I am slowly learning to accept that now more than ever. But I can promise that you will never be alone. I can promise that Daddy and I will always try our best to make choices that will steer you towards love, family, God, and goodness. I can promise that we will pursue every opportunity for you to thrive and to have access to pursuits in education, health, hobbies, culture, sports, career, personal life, and whatever lights you up from within. I can promise that you will end each day knowing that you are loved. I can promise that your daddy and I love each other and you always. 

I will cherish the memories of the newborn you have were and I will cling to what's left of your babyhood; but I am so excited about the toddler you are becoming and the glimpses you show us of the little boy that will be here all too quickly. I pray that you are kind, compassionate, generous, and open-hearted. I pray that you love to learn, to explore, and to reach out to others. I pray that you are a kid who enjoys the outdoors, animals, sports and books, and that you are an adult who values family, friendships, work ethic and peace. I pray that your beautiful heart leads you to do good. You inspire people you've never met and you are changing the world just by being yourself. Your life is a blessing to us all. Thank you for making me a mama and for bringing more joy to our family than we could have imagined. 

Let's hold hands and hearts for many more trips around the sun together.

Happy First Birthday, sweet Milo.


I love you, I love you, I love you,

The C-word

So I've kind of put off writing and sharing this with the world, though some of you I've spoke to individually know a bit more about what's been going on. But I have words and pictures to spam you with for Milo's birthday in a couple days so I thought it was time to get this out of the way.

I haven't written about my current cancer fight in awhile and I guess you could say it was a bit of a mental play on my part --- if I waited until I had good news to share, it would be some kind of self-fulfilling prophecy or something, I could manifest the positive progress I was waiting for... Bear with me because this turned into a bit of a novel.

It also hurt to write about something so scary. I generally keep it pretty positive and for awhile we weren't sure how do-able that would be. Prior to starting my chemotherapy I had a PET-CT scan that would show if there had been any cancer activity besides the tumor we found in the biopsy --- and the results showed that it had in fact spread pretty aggressively. I will never forget sitting with the oncologist, next to my dad who was holding Milo, and hearing that the clinical terms to describe my condition included "metastatic," "incurable," "inoperable." How could this have gone unnoticed? How long has it been there? How quickly had it spread? How could my body, which created and grew and delivered and nourished the most perfect baby boy less that a year earlier, now betray me in the worst way?

The reality now is that I will live with this disease for the rest of my (long and fulfilling) life. It's already spread beyond its original location meaning that it could go anywhere and I'll be on-guard for that every single day. Given the current treatments available, I will continue to get an IV full of drugs every three weeks, indefinitely. The reality, pardon my language, is #fuckcancer.

But like I said, I didn't want to share all this bad news until I could follow it with better news. And, Praise God! there's been plenty of that --- I've had an incredibly easy time handling chemotherapy. It's weird how quickly it started to feel routine. The first day is the longest so they can deliver the drugs slowly and monitor your reactions each time,  so E and I binge-watched Mozart in the Jungle and it was actually almost like a nice day date, even though I stressed over leaving Critter for the longest I'd ever been apart from him. 

Since then I've finished my fourth cycle of chemo and I am still feeling fine overall; a bit of upset stomach here and there and sometimes tired but honestly not different than being-up-at-night-with-a-baby-tired. We also requested an MRI to determine if anything had spread to my brain (my oncologist said she didn't see any symptoms but I reminded her I hadn't had symptoms of ANYTHING other than a blocked milk duct), and that came back clear! And one thing that I'm extremely grateful for is that the genetic testing I did doesn't show any markers for known hereditary predisposition to this or other cancers --- so while they can't test for everything, there's nothing currently that shows my family is at any more significant risk than they were before.

"You Are My Favorite Reason To Never Give Up"
#hopsitalbathroomselfie

After the third round of chemo I was scheduled for anther PET-CT scan to see how things were going and determine if we were on the right course. I prayed so hard leading up to it --- that we would at least not get bad news; that any improvement would be a good thing. I prayed that the chemo was doing its job and that every healthy choice I made was making a difference in stopping the spread of this disease and in reversing its toll on my body. I prayed that I'd have the strength to face whatever the results were and that we and my doctors would be guided to the right decisions. My doctor told me beforehand she was optimistic, given my reactions so far, and I prayed she was right. The day after the scan her nurse called me. After my first scan the phone call was short, and they told me to come in that same afternoon to discuss the results. This time the phone call was short, and gave me the news I'd prayed to hear, "your scan shows significant improvement." Even though she couldn't provide more detail until my upcoming appointment, we had so much thanks and praise and were overjoyed with this good news. I celebrated with frozen yogurt --- previously something I would often eat multiple times a week --- for the first time in months.

We had my regular pre-chemotherapy appointment about a week later with my oncologist and we discussed the PET-CT results. She showed us the film taken which looks a bit like an x-ray, you can see the outlines of my body and the spots lit up on the screen, for lack of a better description, show the tumors and their activity --- the brighter the mass, the greater the size and more active (that's an overly generalized description but you get the idea). Anyways, you can see in comparing my scans from February and April that after three chemo cycles the primary tumor in the right breast and lymph node, that started it all, have gone down noticeably in size and activity.


She said that this is the case for the majority of my tumors --- about 95% of the lesions have reduced in size and activity. This is great news! Praise God! The stubborn one so far seems to be the bone lesion, but they can explore possible other treatments if it doesn't respond well by the end of the planned six cycles.

Working on channeling this "Crazy Sexy Cancer Survivor" mindset.
I can definitely do hard things. Also I keep adding more arm candy.

Have I mentioned that I can TOTALLY feel the good vibes from everyone?
Because I can.

She's encouraged that I still feel really good, and it's possible that they may add one or two additional chemotherapy cycles as we get to the end of what's already planned. However, there has to be a careful balance between using the medicine to shrink tumors and not hurting the body by giving it too much toxicity. From what we've learned, most patients can handle about six to eight cycles of these toxic chemotherapy drugs, and those cycles will typically provide the maximum effectiveness in shrinking the tumors.


At that point I will stop receiving docetaxel which is more toxic, but continue to receive pertuzumab and trastuzumab, which are highly specialized to target my particular type of breast cancer and are showing game-changing results in clinical studies. I'll continue to receive these every three weeks indefinitely, until cancer activity picks up again and starts to progress or some new therapy proves to more effective or some other significant change occurs. The goal here will be to keep the cancer stable and stop it from progressing any further. It's possible that I may still be a candidate for a mastectomy after the chemotherapy, so if you're the praying type, you can pray with us that the chemo reduces the cancer elsewhere in my body enough that they are confident that surgery would be effective; and that these two amazing new drugs stop any further cancer activity and do their job of keeping my body stable, healthy and functional.


The oncologist said that yes, the best case scenario at the end of my six chemotherapy cycles would be to see no evidence of disease and though complete remission is not likely at this stage, it IS possible... But if it's possible I don't see why it couldn't happen to me. In my prayers and thoughts I remind myself and God (I'm sure He doesn't need reminding) that no good would come of me getting any worse, but SO MUCH GOOD would come of me being an amazing success story.

My success would be a win for the fight against breast cancer --- it would show that these drugs and treatments are effective and rightfully the standard of care. It would show that changing your lifestyle to keep yourself naturally healthy as possible can only help in the cancer fight. It would show that faith and prayer and positivity and optimism aren't just catchphrases that get printed on pink tee-shirts but truly powerful and transformative weapons in the fight against this terrible disease. My success would be a step towards making metastatic cancer first a manageable chronic condition and soon curable. I can already hear my doctors or even doctors I've never met telling their patients decades from now, "we had a young lady with a pretty rotten prognosis but she fought like hell and now she's happily still enjoying life and cancer is just a small part of it." I remind myself that studies and data may show typical results and prognoses and such, but the simple fact that I have this diagnosis at this point in my life makes me not typical --- I expect great things of myself and that I can be someone whose success helps mark a turning point in treating and beating this disease.

I saw a quote recently from another young lady, currently fighting and living with advanced stage cervical cancer, who summed it up, "I have cancer, cancer doesn't have me." And like Stuart Scott said, "You beat cancer by how you live, why you live, and the manner in which you live." I have so much faith that God put me on earth to be Milo's mama and that he and I have so much more to do together and share with the world. This is an ongoing fight and the incredibly blessed life I have is worth every second of it.

Be assured I'll never stop fighting,