Summertime, and the livin' is easy....

I love summer. I loved it as a kid, and I love it even more as a mom. The long, lazy days, the ease of going outside to play without bundling up in winter gear, the festivals (especially in Ann Arbor - I think they use anything as an excuse for a festival).

My first chemo went really well. I felt nauseated for the first several days, but the anti-nausea medicine helped quite a bit. As I have told several people, it brought it down to the "pregnant with twins" level, so I was already familiar with that. The fatigue is rough, since I am used to going non-stop all day. So, I guess I am finally learning how to take breaks and slow down a little. 

The second week was my "danger zone" week, since my blood counts (read: immune system) were very low, leaving me susceptible to infections. I stayed home that week, and washed my hands religiously. It reminded me of that month when the girls were in the NICU, and everyone had to be so careful around those tiny babies and their very weak immune systems. Wow, it is like all of that has me very ready to handle this current challenge!

Oh - and I started practicing my Tai Chi every day again. My daily practice used to be one of my favorite things, then I got too busy and stopped. I am very glad to be back at it. It makes me feel more centered and stronger, both physically and mentally.

I am at the tail end of my "recovery week," into which we have tried to distill as much family summer fun as possible. This lovely week has included: bowling, farmer's market, lunch and a movie with Jason (just us!), the Reptile Zoo, coffee with a friend, several park trips, a birthday party for an adorable now 1 year old, bike rides, and the Hands On Museum. 

I have so many thank yous to give out to all the people who have become our support network during this time. Thanks for gift cards (Bobbi Jo, Jenny, and Decky/Christine? - the kids tore open the care package so I don't know for sure who gave us what!), and all the childcare help from my sister Yvette.

AND all the meal help, organized by the multi-talented Meriah: Susan, Emily, Patricia, Jenny, Prab, Jack, Pam, Callie, Amy, Bridgit, Decky, Marion, Wendy, Sarah, Kathy, Megan, Ariel, Karen, Brian, Dee, Trish, Nan, and Wendy. Woah, amazing. And several have brought food more than once!

I am sure I am forgetting people, so thank you to every one for such incredible support. 

Round #2 begins tomorrow. Keep sending all those good thoughts!

Why Statistics are Stupid

First, let me clarify. I actually kinda love numbers and find them quite beautiful. And I think research is fascinating and the whole scientific process is just neet-o. 

BUT, when it comes to the medical world, talking to a patient about statistics and probability is kind of stupid. There is a 30% likelihood of this outcome, a 2% probability of this, and 73% chance of that. From a patient's perspective, it is a simple binary; either it works or it doesn't. The person who loses a child when there was only a 3% chance of that happening doesn't feel any better. When there is a 99% chance of a positive outcome, it still sucks really bad for the people in that 1%.

For anyone who has lost a loved one in a bizarre accident, I'm sure that they don't feel any better knowing that massive tornados, school shootings, and plane crashes are actually quite rare. It happened to them, and it sucked.

Sorry for the rant. I'm feeling strangely optimistic about starting treatment tomorrow. I probably shouldn't get my hopes up, but I am looking forward to tackling this thing. 

Thanks for all the support, literally from all over the globe. Amazing. 

The Time is Now

I've always had issues with the advice, "live every day as if it were your last." Do you realize how messed up the world would be if everyone did that? If we all knew the world would end tonight at midnight, no one would go to work, people would spend every last cent they had, it would be anarchy - sparklingly beautiful anarchy, with drunken revelry and dancing in the streets . . . maybe that doesn't sound so bad after all. But it would be not be conducive to any sort of modern society.

-----

Sorry I haven't written for a while. I have been going through a lengthy maze of testing, including genetic testing. The odds of someone getting two unrelated cancers by age 37 are so astronomically low that they were certain there must be an underlying genetic predisposition to cancer, namely Li–Fraumeni syndrome. It is a pretty scary disorder that makes a person very prone to developing any number of cancers. And it is inherited.

The good news (the GREAT news) is that I do not have that syndrome, meaning my kids are not at risk. It was a major relief to hear that. 

-----

We got some pretty hard news today. It turns out that the cancer has, in fact, spread to several other sites throughout my body. So, the initial radiation/chemo plan is out, since we are no longer dealing with a single tumor. I will instead begin chemo on Monday. They will do two rounds of that, then do more scans to see if the cancer is responding. 

To all those people who have offered good wishes, prayers, and healing vibes, the time is now. Monday morning the battle begins. Get out those lucky rabbit's feet (not so lucky for the rabbit!), bang your drums, light incense, wish on a star, whatever way you know to try and tilt this fight in my favor. 

I'm an anomaly already, so I can surprise them again, right?

Cancer Update (ooh, I'm getting bold about the word!)

Thank you, everyone, for the outpouring of support. It has been just wonderful and I am humbled by the generosity and love from all over the world. I am reminded once again what an amazing community I have around me, both near and far. I am one lucky person. I am trying to reply to everyone, but I apologize for being slow about it. Sometimes this is all just kind of ... a lot.

People are asking for details so here's what I know so far. It is adenocarcinoma of the lung. There are a few lymph nodes in my lung area that are affected, but there is no sign of cancer anywhere else. The treatment will include chemo and surgery, and possibly radiation. I have no idea what caused it, and it is unrelated to the cancer I had when I was 14 (osteogenic sarcoma - bone cancer - in my right humerus). I also have no idea what caused that either, by the way. I'm meeting with the oncologist on Tuesday to lay out the detailed plan, and chemo will most likely start right after that.

As for how I'm feeling, well, I'm all over the place. 

I am ready to fight. I know I am strong, and I can make it through this. Hey, I did it once before, and I am a tougher person now than I was then.

I feel really, really sad that my family has to go through this mess. I hope the girls are too young to remember much of it. Poor Zander has taken me to the ER more times than anyone should have to experience.

I am totally dumbfounded that this is happening again, and I wish I could point to a cause. Did I get struck by lightening twice? Maybe I should buy a lottery ticket.

And there is a part of me, deep down, that is absolutely, completely, paralyzingly terrified. Terrified of possible outcomes that I don't even want to give voice to. Terrified of walking back into hell, but this time my eyes are wide open with the knowledge of just how dark this road can get.

Is it better to know? 

A lot has changed in the 20+ years since I had chemo as a kid. I understand that adult chemo is quite different than childhood chemo, and that some adults continue to live fairly normal lives during treatment, so who knows how all this will play out. 

I keep thinking about 14 year old me. Then, I was so upset to lose my hair. Now, that is such a minor concern it seems trivial. Then, I was so scared of hospitals and needle pokes that I thought I would rather die than go through that. Now, I will walk willingly into any fire, just let me live.

For the record, I still don't like needles.

The Plural of Apocalypse

I lead a pretty golden life. I have an amazing husband who balances out all my quirks perfectly, I have three wonderful and sweet kids, things in the school/career realm are coming along well with all sorts of exciting projects and positive response, my parents and siblings are each incredible individuals and make up a pretty stellar family. As I said to Jason, "I guess there had to be some yang to balance out all this yin."

"Yeah, but this is some pretty f&$!ed up yang!"

Like I said, we are a great match.

...............

So I have cancer. Again. Pretty mind boggling. And it is totally unrelated to the cancer I had as a kid. I keep thinking I'm being Punked.

But, so it goes. The doctors are working on a plan of attack. Running more tests. Gathering information. 

Preparing for battle.

I feel like Buffy. Give me something pointy and tell me where the Big Bad is. I just never knew I would need to learn to plural of apocalypse.

Final Day with Three Under Three

Tomorrow little Z will turn three years old. In keeping with tradition, I made him a birthday hat. As I had hoped, he designed it himself this year. Unfortunately, he hates to wear it. I can hardly blame him - it is really heavy. He wanted a field with horses, cows, a farmer and a fence, and ants. He also requested that the characters on the hat be removable so that he could play with them. His wish was my command. But it made for a very big hat.

Birthday hat recap:

Birthday party prep:

As my eldest reaches his next birthday, my membership in the "three under three" club with expire. It has been fun! That is, if by 'fun' you mean exhausting. ;)

My charming little kiddos.

Assorted thoughts on twins and more

As the shock of raising two babies at once (with an almost 3 year old in the mix, too) is wearing off, I am starting to see a lot of wonderful things about having twins.

Autumn

It seems no matter how we place the girls in their crib, the wriggle wriggle wriggle until their heads are touching and they are holding hands.

Autumn, Mikaela

It reminds me of their first night in this world. See, in the womb they had been positioned head to head, with the top of Mikaela's head touching the side of Autumn's. Their first night in their incubators, Mikaela, tiny as she was, managed to scoot all the way up to the top while Autumn wriggled all the way to the side. I think they were trying to find each other.

Mikaela

I walked into their room the other day to find them chattering to each other in their crib. So adorable. And they both giggle in their sleep! What's up with that? Z did it too. Quite wonderful.

Mikaela

I am getting excited about going back to school in the fall and starting work on some creative projects coming up. I'm not sure how it is going to feel juggling work and the newly-enlarged family, and I get little pangs of sadness to think that I might miss out of those great moments that the kids have. I was complaining to Jason that it is hard having both a family and work that I love. Then I paused and we looked at each other. He said, "Isn't that exactly what we have been trying to create?" Oh, yeah. I guess I am actually incredibly lucky. Nice to have it back in perspective.

The first time Z saw one of his sisters spit up, he recoiled in disgust (which is particularly funny to those of you who recall how much he used to spit up). Then just the other day, his sister spat up and he casually got a kleenex and cleaned it up. Jealousy issues and all, he is still a pretty great kid.

So he does alright most of the time, but when the girls get particularly needy, Z kinda falls apart. It reminds me of this idea I had years ago of doing a variety show lit entirely by the audience. Upon entry to the theater, each audience member would receive a miner-style helmet with a light. There would be several things happening on the stage at once, so whatever grabbed the attention would be lit, and everything else would go dark. I realized it would probably just dissolve into a bunch of attention-getting tricks. This is pretty much what happens to Z. "Oh, the girls are crying? Well . . . look at me! I just dumped out all my legos! Still nursing? Um . . . then I will dump a water bottle on the couch. Did you see that, Mommy? Look at me! Pay attention to me! Mommy! Mommymommymommymommymommy!!!" Totally transparent, totally understandable, and totally exhausting.

The world's cutest triceratops

The jealousy issues we are experiencing are basically the typical new baby problems that every older sibling has, only more so because, well, two babies. Plus we cannot go anywhere without attracting at least a few gawkers. While I am the first person to agree that the girls are gorgeous, these onlookers fail to notice that they have an equally wonderful older brother who stands silently by while people "ooh" and "aah" over his little sisters.

So if you are one of those people who likes to stop someone pushing a twin stroller and comment about the babies, please take a moment to notice if there is an older sibling you are overlooking, and send a little love that way.

Zander sharing his buddies with Autumn

Update

The girls had their monthly weight check, and their weights are now 10 lbs 10 oz for Autumn, and 9 lbs even for Mikaela. They are progressing right along their (premie) growth curves, so all looks well. Nice work, girls! I guess my high fat diet is paying off. Bring on the ice cream!

I am reading Entwined Lives: Twins and What They Tell Us About Human Behavior, and I just learned that if the girls grow up and have babies, these children will be genetic half-siblings because, at the genetic level, Autumn and Mikaela are the same person. HOW BIZARRE IS THAT?!?








I gave Zander the task of rinsing out an empty dish soap bottle. An hour later, the bottle was clean, and he and the kitchen were soaked. How great to be two!

The results are in....

In what is both the strangest and cooled birth gift I've ever received, my sister bought a DNA test for the girls so we can determine what sort of twins they are.

(drumroll please)

They are identical! I had a feeling they were, though the size difference makes them fairly easy to tell apart. Old pictures of Autumn look like Mikaela, so I guess Autumn gives us a sneak peak of how Mikaela will look in a few weeks. I wonder if their sizes will even out as they grow up.

40 Weeks!

May 1 is the girls' official due date, and they are almost 8 weeks old. Weird. They are now 6 lb 8 oz and 7 lb 9 oz. I can't even imagine what I would have felt like had I carried them to this size!

Things around here have been pretty good. We are busy with all the feedings, changings, and burpings, but it is going surprisingly smoothly. My wonderful mother was here for the first two weeks that the girls were home, which was enormously helpful since they were still struggling to eat during that period. It was rather stressful because we would have to wake them up and convince/force them to eat whether they wanted to or not, and then we would anxiously wait for the next weigh in to make sure they had increased the expected amounts. Since then, they have become more like normal newborn babies who wake up and cry when they are hungry. It may sound strange that I am so happy that they cry, but it is quite a relief to have the girls actually communicating this need for food.

Zander is proving to be a total superstar of a big brother. He takes his responsibilities quite seriously and assures me that he is being "very gently" whenever he pats them. He gathers up their car seat blankets and diaper bag for me while I get the girls ready for an outing, and when they fuss in their crib he goes in and checks on them. One day when he was looking at them, he shook his head, sighed and remarked, "I have so many babies!"

It is a bit of a challenge balancing the needs of a 2-1/2 year old and two babies, and we are really trying to ensure that Zander still gets one-on-one time so that he doesn't feel resentful of the girls. I think the hardest part about having twins is also having a preschooler, but if I hadn't already been through the baby-years once, I would probably think it is really hard having twins. So it all works out. 

So what do you think, identical or fraternal? We can't decide (and have not done any testing yet to determine for sure).

A Trial Run

While Mikaela has been enjoying settling in at home, Autumn decided to take matters into her own hands, and removed her feeding tube.

 Oh, my! What have I done!

Was this a good idea? What's going to happen now?

To my pleasant surprise, the doctors have decided to try something a little bit different. Rather than following the very strict feeding schedule (she must take x number of mls every three hours, and anything she doesn't take by mouth goes in her feeding tube), they have decided to follow her lead. If she is a little bit more or less hungry at a feeding they will give her what she wants, if she needs to wait 3.5 hours between one of the feedings, that's okay. 

What a great idea!

They are going to do this trial run for a few days and monitor her weight. If she stops gaining weight, or starts to lose weight, then it is back to the schedule and the feeding tube. So, Autumn, we will listen to you as long as you hold up your end of the bargain and keep gaining weight!

Notice anything missing?

I'm home with a cold today, so Jason is spending the day with the girls. He sent me a text with this picture. Do you see what I see (or, what I don't see)?

Mikaela doesn't have her feeding tube any more! Since yesterday morning, she has taken every feed by mouth. I guess the nurses are getting confident that she will keep doing this. If she keeps it up for several days in a row, she can come home!!!! Come on, Mikaela, you can do it! And Autumn, you keep trying and you will do it soon, too!

I can't stop staring at the picture. I've never seen her face without a tube before!

A Muddle of Ups and Downs

Yesterday morning I got a call from the NICU telling me that they were taking Mikaela for an echocardiogram because has a heart murmur and was breathing fast. (Ugh, what a crummy phone call.)

The test went fine, and they said that the murmur was nothing to be too concerned about it. I guess they are common in premies and that they typically resolve themselves. They don't know why she was breathing funny, but she is back to normal now. (Sigh of relief.)

Autumn would not take her eyes of Mikaela all through the test. I wonder if there is something to that special connection that twins are supposed to have. It was really touching to see her concern. (So sweet!)

Mikaela was retested for MRSA and it came back negative. (YAY!) However, they won't lift the precautions until she has three negative tests, so she still cannot have any contact with her sister, and if I have any skin contact with her, I cannot touch Autumn again until I go home and shower. (So frustrating!)

I have successfully breast fed each girl! They both know how to latch and drink well, and it is so great to see that their newborn instincts are intact. (Way to go, girls!) I really want to try feeding them together, but because of the MRSA precautions I will have to wait until I get them home to do this. (Grr.)

Both girls are gaining wait really well. Mikaela is 4 lb 11 oz, and Autumn is a whopping 5 lb 11 oz. (Hooray!) Now they just need to get more consistent with their feedings. Sometimes they eat really well, and other times they don't seem to have the stamina to eat much, and we end up tube feeding them. This is our last big obstacle we have to overcome before they can come home. I really look forward to having my whole family together! (Trying to remain patient....)

We bought a minivan! We now have a vehicle big enough to fit all three of our kids. A huge thank you to Jay Slingerland for getting us a great deal and helping us have such a positive experience. Anyone in the Owosso area should check out his dealership. (Yay for good people!)

I guess there is more good news than bad, which is good. (Yay!)

...and one step back...

I have been repeatedly told that the NICU experience is an intricate dance of "two steps forward, one step back." After what has been a steady march forward for the past week, I guess we were due for a hiccup.

During a routine nasal swab, Mikaela tested positive for MRSA. The doctors reassured me that she does not have a MRSA infection, merely the presence of MRSA (it is a colonization, not an infection). It could be nothing. Since she does not have an IV or any open wounds, the chance of it entering her bloodstream is very small. They must realize, however, that you cannot tell a mom that her tiny premature baby is testing positive for something like this without making her worry.

What does this mean? She will be bathed with a special soap for 5 days and given an ointment in her nose to kill the colony. It also means that she cannot have any contact with her sister, and I cannot go back and forth between the two. Anyone who comes in contact with her must wear a gown and gloves, then wash thoroughly. The chair and table next to her incubator are now marked "dirty - MRSA." What a crappy 2-week birthday present.

I deeply hope that this will be an annoying inconvenience and nothing else.

Update on the Baby Girls

When I arrived in the NICU today, I was shocked to discover that they had opened the lids to both girls' incubators. Wow, what a great step forward! We'll see how well they tolerate it and if they are able to maintain their own body heat.

They have each started taking some milk by mouth - another important step in their ability to leave the NICU. Autumn, perhaps in a moment of over confidence, pulled out her feeding tube. I reminded her that she needed to keep that in until she had mastered eating. I'm not sure that she understood me.

They are now wearing regular clothes and swaddling in blankets like regular old babies. It is so nice to see them like that! Autumn is now 4 lbs 9 oz and Mikaela is 3 lb 13 oz. Keep growing strong, girls!

Autumn

Mikaela

Snuggling together

Such tiny fingers!

I've been splitting my days, and spending the mornings with Zander then the afternoon/early evening in the NICU with the girls.

I was playing outside with Zander the other day when he picked up a rock and discovered a worm underneath it. He watched it crawling and commented on how it was wiggling slowly. This was the conversation I had with my very literal son:

Me: Can you wiggle like a worm?
Z: Um... I think so...
Me: (waiting) Well, can you show me?
Z: Uh... okay... (hesitating) Here I go ....

He then lay face down in the mud next to the worm and started wiggling. Oh man, I have to be careful how I phrase things with him!

The girls are here!

Late Tuesday night (March 8), after a dramatic emergency c-section (let's just say I am very grateful I was in the hospital), our beautiful little girls came into the world kicking and screaming at 32 weeks 2 days. 

Mikaela Jaise was born at 11:43 pm 

3 lb 6 oz, 16.5 inches

Autumn Willow was born at 11:44 pm

4 lb 5 oz, 17 inches 

Mikaela has been breathing room air since the beginning, and Autumn has been getting some help from the CPAP machine. 


These are the cute decorations that the NICU nurses made for the girls.

Welcome, baby girls! Keep growing strong!

32 Weeks!!!

(Big sigh of relief) We have made it to a major milestone, 32 weeks pregnant (the point at which survival and disability rates greatly improve). I remember when this felt so far away.

So what's the plan now? ... um, no one seems to know. Frankly, I don't think the doctors expected that we would make it this far. So when I asked where we go from here, there was sort of a vague "let's see what happens" response. If things stay just as they are, there is no reason to deliver the girls yet. One doctor said that I might even make it to 36 weeks, and he offhandedly said that then the girls could skip the NICU, stay with me in my room, breast feed right away, and we could all go home together. I think my jaw actually dropped. Another doctor got squirmy at this and said we should focus on trying to get to 34 weeks. I was stunned. We have been bracing ourselves for any number of challenging outcomes, starting back with my first visit from the NICU doctors at 25 weeks, who explained what it would mean to have the girls born so early (in a nutshell, not good). I have accepted that I most likely would not see the girls when they are born as they would be whisked away to the NICU immediately, where they would stay for months. So to think that, after such a crazy pregnancy, there is a possibility that everything could turn out so normal? I feel like I shouldn't even dare hope for that.

So, my new goal is to make it to my birthday with these girls still growing in my belly. On my 35th birthday, I will be 33 weeks and 6 days pregnant. If I go to sleep that night still pregnant, we will have hit the 34 week mark (which is considered "late preterm"). Pretty good birthday wish, I think.

In other news, I have put on just shy of 50 lbs during this pregnancy! Amazing! I am now 1.5x my pre-pregnancy weight. I am one-and-a-half Toris! No wonder it feels like my ribs are trying to split in half.

Good job, little girls. Keep growing strong!

Simplicity of Purpose or Life as a Human Incubator

These past few weeks in the hospital have given me a very simplified way of approaching each day. Essentially, my one purpose right now it to keep the girls safe for as long as I possibly can. It is a strange feeling, knowing that I really only have one goal each day. And every morning that I wake up still pregnant, I have completed my goal for the previous day. It kind of reminds me of when I was on chemo (though that was WAAAAY more crappy) in that my one goal then was to get better. Every day that I got through another treatment or got over another infection brought me one step closer to a healthy outcome.

We are at 31.5 weeks now, so every day I feel a tiny bit less terrified. I realized that I had my first hospitalization at the beginning of December, which means that we've been living with this worry/danger/stress constantly hanging over our heads for three months. Yeah, it hasn't been a very fun pregnancy!

Living in the hospital has given me a deeper understanding of what it feels like to be a two-year-old. As I mentioned in the last post, one of the few things I'm allowed to do is walk across the hall to refill my water cup. So when a thoughtful nurse goes and gets a fresh cup of water for me, I kind of feel like stomping my feet and yelling, "I can do it BY MYSELF!" the way a certain two year old I know does. Most of the time I try to jokingly explain that I have permission to go to the water area so I really look forward to it, but it gets tiresome to explain that every 8 or 12 hours at shift change.

On a happier note, this hospitalization has shown me that we really have become part of a community here. I'm not sure when I stopped thinking of myself as being new in town, but somewhere along the way my family developed a nice group of people who have shown their lovely support through this trying time. Thank you to everyone!

Thoughts from the Minimum Security Prison

I was joking with Jason that I kinda feel like I'm in a minimum security prison. He told me that he saw a special on a minimum security prison in Canada. "Oh, no," he said, "they have MUCH more freedom than you do."

I have "bathroom privileges" (really, that's what they are called, as if I have done something to earn the right to use the bathroom and if I misbehave that right could be revoked), and after some convincing I got permission to go across the hall to refill my water cup.

It's not so bad, really. I have a room with windows, and fairly decent food (though it gets very repetitive), and I've had lots of people stop by and drop off treats, movies, magazines and books to occupy my time. I'm very, very thankful that I am still pregnant and that the girls are growing just as they should be. We are at 30.5 weeks now, getting closer and closer to the safe(r) zone of 32 weeks.

The worst part is being away from "my guys" and I miss all sorts of little stuff. I miss reading Z his bedtime stories, and he was just starting to search for the goldbug in "Car and Trucks and Things That Go," which was my absolute favorite thing about the Richard Scarry books when I was a kid. I am astounded at how well Jason is juggling everything. I mean, wow. I always knew he was a great guy, but I appreciate him now more than ever. They visit me daily which is the highlight of my day, but I still miss all the little incidental moments of day to day life with them.

It feels strange not being able to plan anything. There is this vague worry constantly hanging over my head, knowing that any day I might have to have an emergency c-section, so it is hard to think much beyond one day at a time.

Ultimately, in this current moment both the girls and I are healthy. And that is a good thing.

Question: Where's Tori?

Answer: In the hospital. Yes, this pregnancy has been quite crazy, and now it looks like I will be in the hospital until the girls are born, which will hopefully be no sooner than early March. Jason is doing an amazing job in the "single dad" role, and I am incredibly thankful for the support I have from my friends and family, particularly Melissa who let Jason drop Zander off at 4 am so he could join me in the hospital (thankfully things calmed down and I am still pregnant). Wow, I'm a very lucky person.

Thank you for all the prayers, well-wishes, positive thoughts, meditations etc etc that people have sent. I hope to keep these girls safe inside until we at least reach 32 weeks.