Because the important moments in life just don’t fit in a status update! I started this blog when I was training for my first ½ Ironman, (70.3 miles) to record what I hoped would be growth and progress but ended up being a huge learning experience. Although fitness is one of the key ingredients to a happy life, it certainly isn't the only ingredient. My blog has evolved to document growth, progress and setbacks in other areas too. From my surprise proposal in Rome and wedding in the fall of 2013, to Mom's devastating stage IV cancer diagnosis and death 2 weeks after I found out I was pregnant. Who knows what shape it will take, but thanks for being along for the ride.

Wednesday, April 27, 2016

IVF #3 - in Prague

Right after our little girl was born, my husband booked our flights to Vienna, Prague and Budapest. He is amazing at the mileage game, and scored our business class tickets, valued around $7,000 each, for just $150. It was a huge leap of faith for first-time parents with a newborn to take, and we wondered if we bit off more than we could chew. We didn't yet know what a trip to the grocery store with a little one would entail, let alone spending three weeks trekking around three different cities.

As we started researching the three cities, we realized that the US dollar goes very far Prague. We wondered how much IVF would cost there, and were amazed to find out that it was well under $5,000, including medication. In the United States, medication alone costs $4,000! What about doing IVF while we're there, we wondered? Was their standard of care as good as the states and would it be safe for me?

I did not know what data to look at, or even where to begin in researching clinics abroad. In the US, we now know to look at the SART data, something we did not find out until after we had financially committed to our first (failed) IVF, which cost $20,000. Imagine paying that amount for ... nothing! We paid for the hope of becoming parents, and didn't even have any left to freeze. 

Luckily, my husband has a cousin who is a doctor, and I was able to get her more-informed opinion. I sent her an email with a list of the clinics we were considering. She was able to get a list of "approved" clinics from her attending physician at Children's Hospital Los Angeles, who happened to know a doctor in the Czech Republic. Armed with this knowledge, we felt safe proceeding.

Initially, we were considering clinics in Brno (Reprofit and Unica), not realizing how far it was from Prague. Since I will have multiple appointments, we don't want to be traveling back and forth, almost 130 miles, one way. Currently, we are deciding between the Prague Fertility Centre and GYNEM Fertility Clinic.

It has been tough with the language barrier. Even though their employees speak English, a typical email reads something like this:

Dear Mrs Megan Swanek.
Thank you very much for your confidence in turning our clinic.We are also pleased to hear that you have learned about Unica via a great references. Our clinic has been engaged in the IVF treatment since 1994; making us the IVF centre with the longest tradition in the Czech Republic.  We always strive to emphasize quality; we will very gladly help you.
We fly in 68 days, and I am a bit behind in setting all of this up. When we thought I had melanoma, I obviously could not proceed with any fertility treatments, so everything came to a grinding halt. Besides missing my second month of IUI treatments (which are covered under my current insurance), I stopped exploring the option of IVF all together.

But now, I am excited to move forward. We are thrilled about the possibility of giving baby A a sibling, but remain cautiously optimistic, since my fertility has naturally declined in the two years since my first failed IVF.

Next steps: sending the doctors my hormonal profile so that they can work up my treatment protocol, which my primary care physician ordered yesterday. I'm hoping to have consultation via skype soon, and will keep you updated on the process! 

Thursday, April 14, 2016

No TV Under Three

(The policy is actually "No TV Under Two" but three rhymes...)
Getty Images
I told myself when I as pregnant that I wasn't going to let Baby A watch TV until she was three, one year more than the American Academy of Pediatrics recommends. I am happy to report that so far, I have stuck to it, even though some people said it would be tough. Others said it would be impossible, and my husband was indifferent. 

There are not a lot of things when it comes to parenting that I am rigid about (except, not being rigid!), but no television viewing is definitely one. Please know that I am not being judgmental or trying to sway anyone with this posting! If you've read this far, you're probably doing so because it is of interest to you. Or maybe you're reading because you disagree. 

We all have parenting ideas and ideals that are important to us; this just happens to be mine. For you, it might be germs, and you may shudder when I pick up her Sophie the giraffe that dropped on the floor and hand it back to her, without a second thought.

For some reason, before ever reading any of the studies, I was against television viewing for our daughter. Even though I love watching TV myself, especially murder-mysteries on Investigation Discovery. When I was pregnant, this was the one parenting thing that my husband and I disagreed on because he didn't see it as a big deal, and it was so important to me. 

Intuitively, a baby watching TV just didn't seem right to me. I've seen babies turn into what I call zombabies because they're watching TV. Sometimes, they don't even look up when addressed by name, and will instead keep their eyes fixated on the screen while they say hello or goodbye, when prompted. I have been at restaurants when parents give their baby who can't walk or talk yet an iPad to watch videos on so that they can "eat in peace" (read: without interacting). 

But why shouldn't my baby watch TV? What do the studies say? And can something that the majority of people do really be that bad? After-all, 40% of infants are watching some sort of video by 5 months, and 90% of parents said their children under 2 watch some form of electronic media. 

Early brain development

According to, kids' brains grow profoundly during the first 3 years of life, with the brain tripling in mass in just the first 12 months. The stimuli children experience during this period profoundly influence brain development. 
Infants may stare at the bright colors and motion on a screen, but their brains are incapable of making sense or meaning out of all those bizarre pictures. It takes 2 full years for a baby’s brain to develop to the point where the symbols on a screen come to represent their equivalents in the real world.
Exposure to TV (or iPads, videos on smart phones, etc.) while their brain is in the formative stages of developing, and developing at such a rapid rate, can cause speech, motor and developmental delays.

The American Academy of Pedatrics (AAP) feels so strongly that it is detrimental to little ones for a multitude of reasons, that they implemented a "No TV Under Two" policy.

Where's the harm?

Okay, so babies don't really know what's happening on the screen, but can't they learn language from TV? After-all, there are a ton of "educational" shows geared toward infants, babies and toddlers. Baby Einstein comes to mind. But 'educational TV' for babies doesn't exist, according to the AAP. 

Dozens of studies affirming this led to the policy change in 2011 in which they recommend no TV or screen time at all for children until they are at least 2. 

The policy statement published by the American Academy of Pediatrics (AAP) suggests that not only do children under age two probably learn nothing from the television, but that watching too much can actually delay language development and cause attentional problems.
One of the major manufacturers of baby "educational" videos, Baby Einstein, (owned by Disney) was threatened with a class action lawsuit in 2009, after they were forced to drop the word "educational" from their marketing in 2006 (read more HERE). Not only did they drop that word from their marketing, but they offered full refunds to anyone who had purchased the videos. When you visit their website today, there is no longer a mention of the videos. 
Lawyers threatened a class-action lawsuit for unfair and deceptive practices unless Disney agreed to refund the full purchase price to all who bought the videos since 2004. “The Walt Disney Company’s entire Baby Einstein marketing regime is based on express and implied claims that their videos are educational and beneficial for early childhood development,” a letter from the lawyers said, calling those claims “false because research shows that television viewing is potentially harmful for very young children.”  
The letter also described studies showing that television exposure at ages 1 through 3 is associated with attention problems at age 7. 
Even Sesame Street, which I grew up with, can have negative effects on language development when children under the age of 2 view it

What children are not doing when watching TV

The problem lies not only with what toddlers are doing while they’re watching TV; it’s what they aren’t doing. Specifically, children are programmed to learn from interacting with other people. 
The dance of facial expressions, tone of voice, and body language between a toddler and parent is not only beautiful, it’s so complex that researchers have to record these interactions on video and slow them down just to see everything that’s going on. Whenever one party in this dance, child or parent, is watching TV, the exchange comes to a halt. A toddler learns a lot more from banging pans on the floor while you cook dinner than he does from watching a screen for the same amount of time, because every now and then the 2 of you look at each other. (Read more here).

  • Asking questions
  • Solving problems
  • Being creative
  • Exercising initiative
  • Practicing eye-hand coordination
  • Scanning (useful in reading)
  • Practicing motor skills
  • Thinking critically, logically, and analytically
  • Practicing communication skills
  • Playing interactive games with other children or adults (helpful for developing patience, self-control cooperation, sportsmanship)

How we make it work

We are not people who are against, or don't watch TV. We watch it every day. We have been known to binge-watch Breaking Bad. My husband loves watching the news or Archer, I'm addicted to murder-mysteries, and we both love watching home-improvement shows and dreaming about buying a 4,000+ square foot home for a fraction of the cost of ours, when it's in any other state than California. The difference is that now, we just wait until she's asleep to watch. 

Okay, not all the time - my husband likes to watch the news when he eats dinner - but, we are watching it a lot less than we used to. If she is awake when he watches, I'm usually giving her a bottle and I put a blanket up as a make-shift shield, similar to what women do when breast-feeding. As soon as he finishes eating, he (surprisingly) now turns off the TV without me asking and moves over to the computer. When she's asleep, we come together to watch one of our shows, like Better Call Saul or, if I'm lucky, more murder-mysteries.

We have some adjusting to do, because when she's older I want us all to sit down together to eat at the table and have conversation. Right now, she eats her "meal" much earlier than us, around 4 or 5pm. But it's an improvement over what I feared (back when I was pregnant) would happen when he watched her. I generally don't do things without her, and even took her with me to extended care the other night, but he will watch her while I shower after a run, or need to do laundry. I feared I would come back to find her propped up in front of our 60 inch TV, both of them sitting in complete silence. Instead, I find him down on the floor with her, helping her play with her toys, teaching her to put items in her bucket or, most recently, starting to rough-house with her. 

All studies and research aside, I will take hearing her belly-laughs and squeals, or his "Yay!" followed by applause over the mindless din of the TV any day.

Friday, April 1, 2016

March, 9 Month Update

Our little Bean turned 10 months old on March 26th, so for the majority of the month, she was 9 months.
She's more Irish than any other nationality
Through the beginning of this month, the fear of leaving her too soon was my greatest concern (I was told I had cancer, when I did not). But I was buoyed by her ever-happy nature, and cute stories from her interactions at daycare. She has started to make friends there, and her best friend is a boy named Sebastian. They are as thick as thieves. One of the ladies in the infant room told me that they often play nicely together and when one crawls away, the other will follow. They take turns with toys, and if he takes one of her toys, she doesn't seem to mind, and reaches for another. The other day, they were both taking a nap and our girl woke up first and was put in the play area. When her surveillance of the area did not turn up a Sebastian, she marched (okay, crawled) right back over to the plexi-glass gate separating that area from the area with the cribs. She got up on her knees and started banging on the plexi-glass! This was exciting to me for three reasons: 1) She is forming attachments to babies her own age 2) She is learning that they go away and where they go 3) She has the determination and drive to go after what she wants.

We laid low for the beginning of the month, and fell a little bit out of our nightly walking routine. We did take her to see the Easter Bunny at the Irvine Railroad and by looking at our family photo, you would have no idea what we were going through. Everything seems normal, but in this photo is a Mom afraid of dying, a husband afraid of loosing her, and a little girl who doesn't deserve either. But, none of it was true - it was all a mistake.

Around the middle of the month we started to have some freedom from the fear that being told you have cancer brings. Although it turned out not to be true, it was our reality for three weeks (my husband lost 15 pounds, and a whole lot of sleep). Baby A and I returned to our "Babies Love Music" class on Saturday mornings, our walks, gardening and crafting for her first birthday. The flower girls from our wedding (and their parents) stopped by and the girls loved "playing" with her. More importantly, she loved playing with them, and was not concerned at all about being away from me as they pushed her around the house in her tricycle, and took her into the back yard. She seemed confident and curious and the girls were so good with her.

It was the day after this visit that we were told that a mistake had been made, and I do not have melanoma. My biopsy results were somehow mixed up with another woman.

Just as it took me three weeks to adjust to the fact I had cancer and a 67%-86% chance of being alive in 10 years (depending on which doctor you asked), it also took us awhile to adjust to the news that I did not. My husband remained unconvinced that I was magically cancer-free. He does have a point: If this doctor's office made a mistake one time, what is to say that the melanoma biopsy was really from another person and not one of the three areas on me that were taken that day. We are still in the process of getting genetic testing done on the samples to prove that it was really a mistake, but it has been an arduous process with many calls and still no results.

She learned to use her walker around the middle of the month, a few days after our flower girls visited and showed her how. One day, she looked at her walker, crawled to it, and stood up and took a step. She slowly lowered herself down, and then repeated it. The third time, she was off, taking at least ten consecutive steps, until the walker ran into the wall. We turned her and the walker around, and she went the length of the living room. "Shouldn't we be recording this?" my husband asked, and we both took out our cell phones.

Bean can pull herself up on almost anything now, even my skirt. She roams freely around the house, and slowly squats to a sitting position when she is tired of standing. She enjoys our shopping trips and even all of the doctor's appointments that I had. We were shopping for a new light fixture at Home Depo. and "taught" her to kiss. First, she watches us with a huge grin, then we try to kiss her and she leans in, with her mouth agape. It's pretty much the cutest thing ever. She will often clap when she's done, like she does in the video below.

Saturday the 19th was the first day of Spring. We booked a Christmas trip to Italy (Venice, Lake Como and Milan) and applied for her passport. We had to do this in person, at the post office, and raise our right hands and solemnly swear that she was our daughter. This made it all seem very official, and I cannot wait to get her passport (they should make the tiny-sized for her little hands and pockets) and start earning stamps from different countries!

She knows what clapping means now, and will clap for herself after she does something that we ask, like when she leans her forehead in for a kiss, or gives me a kiss. She will also way bye. Around the end of the month, she started kissing our dog, Trevi and laughing. I feel this way every month, but this is by far my favorite age. I just cannot get enough of her, and never want to do anything that I can't take her to.

She continues to be the happiest baby I have ever been around, and is not even fussy when she's sick. We took her to the emergency room for croup and even though she had a fever of 101, she was cuddly and sweet. We had never experienced the barking seal-like sound of croup, and we were so frightened as we rushed her to CHOC, worried it could be whooping cough. They gave her the very first dose of medicine she has ever received when they gave her ibuprofen. She was then given a steroid, dexamethazone, which she threw up. We had to wait longer for a shot to be ordered, and she was given a breathing treatment while we waited. Her temperature was back to normal before we left around 2am. I thought for sure she would fall right asleep when we got home, but apparently steroids are like crack for babies. She was babbling and standing up looking out the window which we had opened to let in the cool night air for close to an hour before she fell asleep. I was afraid that I would fall asleep before her and she would be on her own, roaming around the bed.

I went to work the next morning on 3 hours of sleep. Since this was my very first sleep-deprived night since the first few weeks of her life, I can't complain. Both her and my husband were sleeping when I got home, and I watched her while he rested until about 6:30pm when I just had to lay down. He took over baby duty and I fell asleep at 7pm, telling him to wake me if she was fussy or I was needed. When I woke up at 11pm to a dark, quiet house and the baby monitor on beside me, I figured that all went well and fell back to sleep until morning.

Me: "So, everything went well last night" I said in the morning, as more of a statement than an inquiry. 

Husband: "Not really, she was up until 10:30 pm just staring at the monitor." 

Me: "What?? Poor thing! You know I always hold her until she falls asleep! Alone in the dark and looking at the monitor?? How sad!"

Husband: "Actually, it was kind of scary with those beady little eyes staring at me."

From Jeri & Mitch Hammock. Jeri sends her special gifts in honor of my Mom.
Her lack of complaining and high tolerance for pain were evident the following week when she had an ear infection, but we didn't know it. Her cough was much better and assuming that she was on the mend, we had no idea it had traveled to her ear. Daycare told us she was crying when she sucked on her bottle and I took her straight to the doctor after work that same day. It must have been bothering her for quite awhile already, because by the time we arrived at the doctor's office, her ear drum had burst from the pressure. Pobrecita! I felt horrible! She was given her first prescription for the (bubblegum flavored) antibiotic amoxicillin and by the end of the month was (finally) all better.

I had a few night events at work toward the end of the month. One night, I returned to work for a parent group and left after my short talk. My husband and baby A had walked to El Torrito and just sat down to eat, so I joined them. It was the best feeling to walk up to the table and see her sitting in her highchair, happy and babbling away to Daddy, not a care in the world. She tried a few pieces of rice and a mashed-up bean as he told me how wonderful she had been, just enjoying her time with him. As we walked home (he came back for the car later), she fell asleep. Even though she was tired, she wasn't fussy at all! I know it sounds trite, but seeing what an amazing father he is to her causes me to fall in love with him more and more.

Baby A loves dancing, and one song I play frequently for her is "Dancing Queen" by Abba. We change the lyrics to Dancing Bean. She still does her little head bob, but now will also bend her knees if she's standing and sometimes move her arms back and forth. Not knowing this, daycare commented on how much she loves music and dancing.

She continues to love daycare, which is so comforting to me. As I was leaving the other day, one of the workers was returning from her car and walked toward us. As she approached us, Baby A leaned forward, and stretched out her arms to be held. This says everything that her words cannot say, and assures me that she loves it there! Joan took her into her arms and kissed her cheeks. She told her "I love you too! You just made my day." 

  • Pulling herself up to standing, and staying for awhile 
  • SIX teeth
  • Walking using walker (March 15th)
  • "Kissing" both of us, and Trevi, with her mouth agape
  • Pushing items while crawling
  • Pulling items toward her
  • Giving me things
  • Turning pages in a book (I have to hold the ones I don't want her to turn)
  • Walking while holding on to couch or coffee table
  • Uses thumb and finger to pick up small objects
  • Looks for partially hidden objects (like my phone!)
  • Drinking from a cup (with assistance)
  • Sitting in a little chair at the table at daycare and trying finger foods
  • Lifting her arms up when she wants to be picked up (this just happened at the very end of the month)
Things I don't want to forget about this month:
Scrunchie nose!
  • Squealing when she gets excited - sometimes, several short squeals in a row
  • Brushing her teeth, with a huge grin
  • Nicknames: Bun Snuggler, Autonomous, Baby A, Bean, Choochee Face
  • Giving me kisses
  • Playing in the bathroom in the mornings when I get ready
  • How she scrunches up her nose 
Routines we're continuing:
  • Singing to her: You Are My Sunshine, Amazing Grace (bedtime)
  • Reading children's books to her. She has started to look at the pictures and turn the pages. She loves Madeline (thanks Ivy-Curwen clan!)
  • Evening walks
  • Crocheting
  • Nightly prayers
  • Morning snuggle time - she now sleeps in the crook of my left arm.
  • This little piggy. She now anticipates the "Wee, wee, wee all the way home" part and will smile and scrunch her shoulders.
  • Asking "Where's Daddy?" or "Where's Trevi?" and cheering when she looks
  • Lunch visits - every day!
  • Peak-a-boo - she recently started using the bed sheets to hide herself while playing.
  • Listening to the same record at every feeding. I have it on the floor, by her high chair, and she loves watching it spin. Its an old Disney record, "Mother Goose."
  • Brushing her teeth
Routines we're establishing:
  • Playing with items in the cupboards, taking items out of the diaper bag or refrigerator. We always thank her for "organizing." 
  • Practicing kissing. She doesn't know how to pucker up yet.
  • Brushing her teeth
  • Clicking noises with her tongue 
New Foods This Month:
  • Strawberries (real) 
  • Butternut squash (real - still too solid for her liking)
  • Egg (just the yoke, mixed with oatmeal)
  • Cottage cheese
  • Pumpkin
  • Prunes
  • Lemon!
  • Cheery-O's
  • Cheese
  • Rice

Saturday, March 26, 2016

Return to Running

I'm not sure how or why, but my blog was just featured as #46 in: 

The post? Ironically, "100 Best Running Blogs" in spite of the fact that I have not run one mile in longer than I care to admit; it has been at least a few months. And I don't even have a valid excuse. I have a super-nice jogging stroller that glides along effortlessly. My almost 10 month old baby sleeps 10-12 hours a night, naps and always falls asleep early. I have a very supportive husband who rarely, if ever, goes out so that's not it either. 

So why haven't I logged any miles? I have had a pain in my left hip post-run ever since my friend Delia peer-pressured me into my first (and only) ultra-marathon: The North Face Endurance Challenge, back in 2011. It actually was an incredible experience that you can read about here. After that race, I took a break for two whole months, and was all set to start training for the Ragnar Relay. When I did, the pain was still there. I kept running anyway, but had to back off the distance and sell my entry into the race to a friend. 

Then, I was out of commission while undergoing fertility treatments (a few IUIs and 2 IVFs) and during my entire pregnancy. I don't believe that running is unhealthy during pregnancy, and always thought I would continue. However, because I was going through the IVF process, my doctors would not allow me to, and I wasn't about to go against their recommendations.

After my c-section, I couldn't run for over two months. My doctor even chided me for walking too far during that time. I was doing three miles, twice a day, which he said was too much. When I was finally cleared to run, I was so excited to get out there, but it was infrequent because we did not have the right attachment to put her car seat in the jogging stroller. She needed to wait until she had good neck stability, and was over 6 months old. I went for a run here or there, but hated being apart from her.

After waiting all that time, I was ready to get back into it. Finally old enough to go in the stroller, I headed out for a few 3 mile runs which were extremely difficult. Not only was I heavier than pre-pregnancy, but it seemed as if all my cardio was if I had never run before. When you're used to going on 10+ mile runs and then finding yourself not able to run 1 mile without a walk-break (or two!), it is mentally and physically defeating. 

And then the hip pain came back. It was slightly different, on the side instead of the front, but still my left hip.

It was so bad after one 1.5 mile run with my husband (3 laps around the block) that I was limping the next day. Wondering if I was doing more harm than good, I resolved to hold off on running until my doctor could determine what was wrong. I went in for an appointment, and he didn't really do anything other than recommend physical therapy which is too far from my house. A few days later, I called and asked for an MRI. I wanted to know if this was just something fixable (such as ligaments, alignment, muscle imbalance) or if it was possibly an early arthritis or bone issue. I started to wonder if I should be running at all. When he (through speaking to his nurses) would not order an MRI without seeing me again, out of frustration I said "Please let him know that I'm going to switch doctors."

I switched to my new doctor, who ordered a hip x-ray (precursor to an MRI). I was all set to do that when I was given the diagnosis of melanoma, which turned out to be incorrect. While we still thought I had melanoma, I had a wide-excision on my back and two lymph nodes removed. This was almost a month ago and I just now am starting to not be in pain. For the first time in my life, I was going through something emotionally difficult and draining and I was not able to run to make it seem smaller.

Which brings us to today. Having my blog featured in this was a bit of a wake-up call. I still need to get my hip pain checked out, but now that I was just given an (unnecessary) dose of radiation with my PET-CT scan, I'm not sure I want to add an MRI to that. I also have to switch doctors and find a new primary care physician who won't tell me I have cancer when I don't. In the mean time, I don't want to (literally) sit around! My goal is to be back to my pre-pregnancy weight by her first birthday, which is only two months away. Running is my go-to activity for weight loss, and also for helping me feel amazing mentally. 

So as soon as I finish this, I'm headed out the door for a run. It won't be far, and it won't be easy, but I'm going to do it and commit to running 3 miles at least three times every week until her party.

Monday, March 14, 2016

I Don't Have Cancer?

WARNING: This post contains a photo of my incision. If you do not want to see it, do not scroll down. Stick with the cute illustration here on your left. 

The month of March rolled in like one of those foggy mornings where the fog lingers well into the afternoon and you think it's going to clear up, but it never does. I constantly found myself distracted by the looming outcomes of my various tests and biopsies. The best example of how distracted I became is one night after a particularly sweet and mood-boosting conversation with my Mom Cathy, I passed the phone to my husband, who had a few things he needed to ask her. While they were on the phone, I started to search for mine. I checked where I was sitting. No phone. The kitchen, the charger. No and no. At a loss, I mouthed to my husband "Have you seen my phone?" To which he responded by pointing to his ear. Oooh, he's still on it. Right.

I did my best to be present and happy and sweet for my baby girl, who really is becoming more and more, with each passing day: My sunshine. Seeing her excited smile, and a squeal if I'm lucky, when we've been apart or she sees Trevi, fills my heart. I can't get enough of her when she's awake, and I always have a twinge of sadness when she drifts off to sleep, in my arms. I hold her for awhile after she falls asleep because I just don't want to put her down. And sometimes, I put my face close to hers so that I can feel her breath when she exhales.

Somehow, I was able to make it through that first week of March without crying at work (practice from Mom's situation?) but would often let down my guard on the drive home, or once at home. It sure must be confusing to a baby who is new to learning expressions and their corresponding meanings, and the world in general, to suddenly be faced with a Mommy who bawls her eyes out, while also trying to smile and now hugs her just a little too tightly.

On the 14th, I returned to my primary care physician who I credited with saving my life, and we were to continue with mole removal. I was also planning to ask her if there was any way that the original three biopsy samples had been mixed up...because no melanoma was found in the wide excision that was done. But, we since learned that happens, sometimes.

We were in no way prepared for what we were told when her and her office manager walked in: You do not have melanoma, and you never had melanoma. The biopsy results were mixed up. 

We are still in shock and don't know what to think. My husband is unsure that these "new" results are even accurate, and we have asked for DNA testing to be certain.

Every person who is told they have cancer wishes and prays that it is not true. This must be some sort of a mistake is one of the first things that goes through your mind. How many get called back in and told it really is?

We can't stop thinking the poor other girl who got the clear results only to be called and told this, after it has been growing for 3 weeks. The doctor said she has had melanoma before.

It's almost 1/2 my back, plus lymph node removal

Wednesday, March 9, 2016

My Oncologist

I have an oncologist, which means I have cancer. These two facts still have not really sunk in. I imagined signing in at my oncologist's office in Huntington Beach this afternoon, only to be called up to the window a short time later and told "Megan? I'm sorry, there seems to be a mistake. You were referred to us when you had cancer. Your results were faxed to us yesterday and we see that you're now cancer free. Congratulations! There's no need to see the doctor."

But as I learned just days ago, while the results were great (clear margins, not in lymph nodes), I still "have" cancer because it is melanoma and melanoma does not operate by normal rules.

We left our daughter at daycare and sat in the waiting room with a litany of questions to ask:
  • What is my chance of re-occurrence?
  • Is there anything I can do to prevent re-occurrence
  • How does this affect our planned infertility treatments 1) Natural cycle IUI's and IVF?
  • How might the hormones used in treatment affect the melanoma?
  • Does melanoma really grow faster while pregnant?
  • What stage am I?
  • Are there any other screenings I can have done besides PET/CT?
  • How frequent will my scans be? Are there negative side-effects from frequent scans?
  • How can we be as aggressive as possible?
  • Should I have lymph nodes biopsied again in a few months?
  • What type of sunscreen should I wear?
  • Is there a certain amount of time when I will be "in the clear" if I don't have any re-occurrence?
I think we left the office with more questions than we had answers. For example, we don't even really know what stage I am. The doctor told us I was stage II b - a devastating fact - and when Nathan asked him to show him on the admittedly confusing flow chart, the doctor retracted his answer with a less than confident "Oh, no I see, you're right, 1b."

There are no treatments for patients unless they are stage 3 or 4, as we had already learned because the benefits need to outweigh the costs, and even the treatment can kill you. And sadly, he did suggest holding off on trying to have another baby, at least until we have our 6 month scans. I asked him if I could have the scans in 3 months instead, and he explained that if any cancer was growing now, it would not yet be big enough to be picked up on a scan in three months. Plus, there's the exposure. We split the difference, sort of, and he agreed that I could have scans again in 4 months.

Then we were told something slightly alarming: that there was no melanoma found in the wide excision. Well since the biopsy showed margins that were not clear, there should be some there, right? This had us wondering if - gasp - the wrong area had been excised. What if the bottles were labeled incorrectly by the doctor or when they were sent to the lab? It could happen, right? Nathan was on the phone to the surgeon, who took personal offence to the thought of this (though the error would have happened prior to his involvement) and started explaining that he doesn't just go taking out chunks of skin. Well, the oncologist, who knew the surgeon and was motioning for the phone and Nathan passed it off to him, not really being given the opportunity to explain he was handing it over. It was pretty funny when the oncologist started telling my surgeon that my wound was now looking infected and he would need to place me on a course of antibiotics, and the surgeon, still thinking he was talking to Nathan shot back with "You cannot say that - that needs to come from a doctor!"

We left the 3 pm appointment just after 5:30 pm, more confused and defeated, and arrived to our little girl's daycare before they closed at 6 pm. We are considering switching medical groups on the first of the month, but still have appointments this week, with a new dermatologist and another visit to my primary care. We are also getting second opinions on the pathology reports, which may take up to 10 days, so that we can be certain of proper staging.

Being told that you - or a loved one - have cancer knocks the wind out of you and shakes you to your very core. I used to love being scared as a child and remember entering my teens and 20's realizing that "nothing" scared me anymore. Well cancer sure does. And it does it in way unlike any horror movie. Because it is real and it is your life and it is in your body.

It invaded my mind long before we found out that it was not in my lymph nodes. At church that first Sunday, my thoughts started drifting as we sat in the fifth row, close to the choir because our daughter likes watching them sing. I guess I do, too. I looked at my favorite cute older woman, 70-ish with a gray bob, stylish clothes and always a bright shade of lipstick. As she sang, I imagined her having tea with a good friend later that day, watering her spider plants on the patio and then feeding her cat a combination of wet and dry food, so it didn't ruin their teeth. Then my eyes landed on a homely girl in her late twenties. She was pretty, but not too pretty, with no ring on her finger. Before I knew it, I pictured her making a good second wife to my husband. I was as comforted by the fact that she looked like she would be a good Mom to my daughter as I was the fact that she probably did not have as good of a sense of humor as I do, thus ensuring that he would still miss me from time to time.

I have been so caught up in my own worry, self-pity, and fear of leaving my daughter without a Mom that I did not realize the turmoil my husband was in. His tough "we've got this - you're going to be fine" attitude was mixed with the sweetest helpfulness, and he would cheerfully ask me several times each day what he could do for me, or help with. Each day, I woke up a new post-it in a different location with an explanation of something he loved about me, which I have hidden away, and will save all my life. He prayed with me at night, and held me as I cried and told me he wished it was happening to him instead. I had no idea that he was going through so much because he seemed fine and was "there" for me.

It wasn't until I saw his elation yesterday when we were given the good news of clear margins and clear lymph nodes and he told me "Now I can eat" that I realized how tough this had been on him. In less than two weeks, he had lost 15 pounds, and I dropped five. It probably would have been more, if not for our local Catholic church's meal tidings which we signed up for with some coaxing, and were given a few home-cooked meals every few days for one week.

But I will say that not all of this has been negative. There's nothing like being told you have cancer to infuse your life with meaning. My husband and I already have a completely new outlook on life and each other, how we spend our time, what we worry about and who we let get to us (read: no one). This new perspective is slowly emerging and taking shape as we steady ourselves, still reeling from the news. I hope to expand on that and use the power that cancer has over me right now in positive ways. Tonight was a rush and a blur and we are tired and scared but we are clinging to each other with a tender kindness that somehow makes it all palpable.

Though I lament the fact that I now have an oncologist and still technically have cancer, I am keenly aware that what I have to be thankful for outweighs the power that cancer holds. I am blessed beyond measure because "something" got me to that my new doctor (Tiffany Wilson in Irvine), who did a biopsy of a mole that didn't really look suspicious and caught it. That "something" was either my Mom, God, my intuition, or all of the above.

I want to thank you for reading and being a part of my journey through this, and all of you who have reached out in support. Somehow, my blog views are now hovering just above 6,000 every month, something I never dreamed of, with ten or more readers in the United Kingdom, Canada, Australia, Germany, India, Estonia, Brazil, Spain and Russia.

If you haven't already, you can sign up to be notified of future postings here. Don't worry, you won't read about me to turning into a cancer warrior or survivor, something I think should be reserved for those who undergo chemotherapy. But I will share with you my life as it comes my way, with honesty, sincerity and hopefully some humor.

Tuesday, March 8, 2016

Retrospective + Results

When I started my blog just over five years ago, I didn't really have much to blog about. But I wanted to start a blog just the same, and so the topic of most of my posts became triathlon training, since I was gearing up for my first (and last) half Ironman. My first posting was enthusiastically titled FIRST DAY IN THE POOL! and I continued to blog about the ups and downs of training for the next six months, sometimes throwing in a recipe or, if you were really lucky, motivation or race-recovery tips. 

I ended up not completing the entire race, finishing 69.1 miles instead of the 70.3. When I look back at that race report here, I see photos of my Mom, Dad and brother and am brought back to that sunny day in May when my greatest concern was that race, and my biggest regret was not having trained harder for the swim portion.

When I had a lull in my training, I remember sometimes being at a loss on topics for my blog. Slowly, my blog did start to tackle more serious topics, but not until quite awhile after I wrote about Shifting Focus of my blog to, you guessed it, self improvement. I quoted a book I was currently reading, The Happiness Project by Gretchen Rubin. 
"The words of the writer Colette had haunted me for years: 'What a wonderful life I've had! I only wish I'd realized it sooner.' I didn't want to look back, at the end of my life or after some great catastrophe, and think, 'How happy I used to be then, if only I'd realized it.' I needed to think about this: How could I discipline myself to feel grateful for my ordinary day? How could I set a higher standard for myself as a wife, mother, writer, a friend? How could I let go of everyday annoyances to keep a larger, more transcendent perspective?" (from The Happiness Project)

I cautiously introduced my now husband to my "readers" (how many did I have then, 10?) months after I had written in my private diary that I knew he was the one on the night of our very first date. And I gushed over his proposal to me in front of the Trevi Fountain on a surprise trip to Rome in my We're Engaged! posting. It was perfect, and a fairy-tale, and more than I had ever even hoped for, as we began wedding planning.

All of my posts were positive, because that's how life was at the time. Simple, yet exciting, with everything finally falling into place.

Then, three months before our wedding, Mom was diagnosed with cancer. Brain cancer. And I started my posting The Big C with a quote that really wanted to believe, but now finally know to be true: 

“The next time you’re faced with something that’s unexpected, unwanted, and uncertain, consider that it may be a gift.”—Stacey Kramer

No longer searching for topics, I blogged my way through my last 14 months with her and came to understand just how therapeutic putting my thoughts down and sharing them with others had become. Never one to go on the computer and proud of the fact she had never sent or received and email, she would often contribute to my blog by suggesting I share her point of view or a funny anecdote that happened during chemo treatment. I interviewed her about parenting after our first (failed) IVF procedure, knowing she might not be around when I had my little girl. 

I started to make connections and had other people from different parts of the world reach out in support. It also felt good knowing that our memories were saved; archived. I wouldn't forget, for example, Autumn Weekends with Mom, and they were there not just for me to look back on one day, but for family, her family even, in other parts of the world to see and always there for safekeeping. And for future family, like our now 9 month old little girl.

I blogged through our two IVF procedures, and the birth of our amazing little girl - life's real game-changer and our greatest joy. The tough parts were finally behind us, and we were set right again on a great course for our life. Having already had our fair-share of trials in our short marriage, some of which actually were not blogged about, we had emerged with our relationship in-tact, not completely unscathed but stronger as a couple and definitely closer for it.

And that brings us to today. A day or two before I will hopefully be receiving the news that my margins were clear, and the melanoma was not already in my lymph nodes. But here I sit, absolutely terrified that won't be the case. Or that it will return in three months. What I'm learning about the disease is that it will never be "cured" or gone from me. The most I can hope for is what melanoma survivors call NED: no evidence of disease.

I had avoided google and webmd until a few days ago. That was when I found out that because my primary tumor was more than 1 mm, and I'm most likely stage 1B, I will never be cured. It may recur, but with current stage my chances would be lower. Lower...but what I really wanted was it to be gone. Forever. I asked a family member who is a doctor how it reoccurs....same mole/site or different? She said Usually, the same one shows up years later. It recurs locally or may spread distantly.

I was so distraught by this. Distraught by the fact that there was nothing I could proactively "do" to get rid of it, like chemo. I could stay on top of my scans every three months, but even PET CT scans only show actual masses, not cellular changes. Depending on where they are, it can be too late. I lamented to my Mom Cathy, who has checked in on me every day since the diagnosis, that I did not want to leave our little girl with no Mom at 10 years old or heck, even 20.

I usually try and tie my postings up with a tidy bow and put a positive spin on them. But in this one, I'm not going to try that hard. I am going to end it with how I am feeling and how frightened I am of leaving my little girl and the love of my life who has, in less than three years of marriage, proven himself a thousand times over to be more than I could ask for or probably deserve.

***UPDATE*** My surgeon just called while we were on our walk. Margins were clear, primary site was widely excised, and there were NO melanoma cells in my two lymph nodes that were biopsied. He is faxing the report to my oncologist who we meet with tomorrow at 3pm. My husband picked me up, careful to avoid my 18 stitches that look like a shark bite, spun me around and kissed me. It may not be gone, and we have a lot to learn about how to remain vigilant, but for right now it is a whole lot smaller.

Saturday, March 5, 2016

Melanoma Surgery

It has been 10 days since we found out that I have melanoma and each one has been fraught with emotion. Up and down every day, sometimes even within the same day. I managed to stay away from survival rates/prognosis until the day after my surgery, today. That is when I learned that if it has not spread to my lymph nodes - something we will not find out for a few more days - I have an 86% chance of being alive in 10 years. That's a B+, and a tough pill to swallow.

The day before my surgery we received the PET/CT scan results and found out that they were clear. We were elated, knowing that this at least meant I was stage IV because there were no masses. However, we quickly learned that this type of scan does up cancer cells, only masses, so the melanoma could have already spread to my lymph nodes. Only a biopsy would determine. We quickly went from elation to tempered enthusiasm.

We checked into HOAG hospital at 8:45 am and left just after 3 pm. It was a long day, but I was under anesthesia for most of it. When I arrived I was taken to the pre-op room. My husband and daughter were brought back to visit with me before I was taken down to nuclear medicine for mapping of my sentinel lymph node. I have always said she was a good sleeper, and this was no exception. Less than five minutes after she was placed on me, she was out and even stayed on my while they hooked up my IV on the top of my left hand. Holding her is the best calming drug out there.

I was wheeled down to nuclear medicine so that they could do some mapping and find which lymph node the melanoma would go to if it had spread. I was a bit alarmed to be told that due to the location (over right shoulder blade) which was more in the middle of my back, it could go to either the lymph nodes by my right armpit, or the ones near my right groin, or both. This was alarming. Each of the four injections stung and burned and I held my breath with each one. Laying as still as possible so they could get good images for 5 minutes here, 5 minutes there, I was quickly told that the radioactive dye only traveled to my right armpit area and was relieved. The radiologist came out and drew the location with a marker.

Then I was wheeled back up to the pre-op room where my husband and daughter were waiting, and met my anesthesiologist and my surgeon that we had met just a few days prior. We had been under the impression that he was going to biopsy my lymph node(s), but were a bit confused to learn that he would actually be removing 3 of them. Since there are about 50, he explained it as "picking grapes." I gave kisses to my loves, and was taken into the surgery room.

The surgery rooms are always so bright and cold. As I was injected with the medicine to put me under, my blood pressure cuff was inflating and it burned and hurt so bad. Even though I had been given something to relax me, tears immediately started flowing. "Hold off on her cuff" was the last thing I remember hearing someone say as I was placed on the surgery table and quietly said three Hail Mary's before drifting off.

Hours passed and the surgeries were successful I would find out later. Well, we will not know if they "got" all of the melanoma until the results of the tissue being analyzed come back and the margins are clear. And the real game changer: has it spread to my lymph nodes. Apparently, there is only a 6% chance that it has for  me, based on my data.

As I "came to" while being wheeled into recovery, I was crying. I vaguely remember someone asking if I was in pain, and trying to articulate, no, I was not in pain but I lost my Mom to cancer and now I have and a 9 month old little girl. I don't think I got much out because it was hard to form words.

I was told that the lymph node surgery was a success - that they removed three - and was happy. At our consultation earlier in the week, he said that there was a small chance he would not be able to "find" it so, I was relieved. Anxious to see my husband and my girl, I had to wait an additional 30 minutes in recovery after being given a narcotic in my IV. My right arm hurt the most, more than my back incision.

It was so wonderful to see them and be reunited after what had seemed like a much longer period of time. "I'm glad that it is out of you. I love you, you're my baby." He whispered in my ear as we both nuzzled our 9 month old girl.

I felt pretty optimistic on the drive home, and for the rest of the evening. I tried to stay positive and said that this would be looked back on as the great cancer scare of 2016. We walked around the block with baby A in her SmartTrike and I did some watering of my recently planted sunflower seeds for her party. I talked to my Mom Cathy who also seemed very cheerful and my Dad and friend Andrea. My husband was beyond amazing doing everything to prepare baby A for bed. She drifted off to sleep at 7pm and I carried her into her nursery, as he transferred her from my arms to her crib.

We had time alone together to start reading The Catechism of The Catholic Church, our "homework" assignment from the priest who had visited the night before, in response to me asking him what I could do to grow in my faith. He suggested we read it slowly over a year or two, together, and discuss it. We both very much felt that if we can get through this we will be stronger and focus on what is really important in life: being kind and good to each other and to our girl and growing in our faith.

I tried to sleep and could not stop thinking about planning for her first birthday. My mind was racing, which I didn't understand since my medication was supposed to make me drowsy. It took an hour of laying there party planning with no chance of sleep for me to realize that maybe the grande caramel machiatio I had on the drive home at 4pm wasn't the best idea. I finally took a sleeping pill at 11:30 pm when she awoke for a feeding and my husband brought her to me.

When I woke up, I was in pain, and  found that my happy, optimistic fog had dissolved during the night. Still not knowing what stage I was, I started looking up stats, which I hadn't done before and started crying. My husband came out and found me holding our girl, and my phone, looking at this:

What stage am I? We won't know until Tuesday or Wednesday...but I'm at least 1B. I kept staring at the 86% and was so focused on that. But I didn't have too long to feel sorry for myself, because we had to get ready for my Dad and brother and take our Baby A to see the Easter Bunny for the first time. 

What else do you do when you find yourself down and in the doldrums? Get out there and put some wind in your sails! For us, this was a trip to the Irvine Park Railroad and our little girl's first experience of terror. 

My everything
Seeing my family and the bunny had an analgesic effect, but here I sit back at home wondering and worrying. Time to get busy ... crocheting, cleaning or getting a movie lined up for tonight to watch with my husband. Right now our girl is napping on his chest and there are beautiful overcast skies and a lovely breeze coming in through the slider. When she wakes up, he's going to build a fire. What is the point of focusing so much on the 86% as the best possible outcome and feeling robbed of my 100%? Doing so robs me, and my family, of the here and now. Besides, how many of us know that we have 100% anyway? I thought I did, but I sure didn't. If this had not been caught, my 10 year survival rate percentage would have been 0%. I have to try my best to focus on what I have and how lucky I am that it was caught, instead of being upset that I have it or that it wasn't caught sooner.

As Andy from Shawshank Redemption said I guess it comes down to a simple choice, really. Get busy living or get busy dying.