Good-ish

I was surprised and a little embarrassed to see that I have my every-other-week clinical trial checkup on Monday, meaning it has been almost two weeks since I had my first scans on this trial and I still haven’t written an update. Well, patient reader, in a nutshell my scans were good-ish. The lungs and body appear unchanged, and while there were no new spots on the brain, the New Guy (the brain met that was my ticket into the StarTrk-2 trial) looked mostly the same but a little bit rounder with some edema. Since we don’t know what happened during the agonizing 18 days that I was off all treatment, letting the cancer grow completely unfettered, the doc is calling it stable. And stable is good. The next scans will give us a better sense of how this drug will work on my cancer.

Guess when the next scans are - my birthday. I’m going to take that as a good omen.

I’m coping okay with the new drug, entrectinib. I had a whole laundry list of side effects to tell my trial doctor about: 

• Sleep 12 hrs/night
• Numb/tingling mouth 
• Feel slightly off balance
• Drugged feeling about 2 hours post dosage
• Scatterbrained, lose train of thought when interrupted
• Have to concentrate harder to follow conversations
• Very sensitive skin, prickly, pins and needles feeling
• Sometime struggle to find the right word

They designed this drug to get into the brain, and the side effects sure feel like it does!

The sensory stuff is either getting less or I am getting used to it. The main struggles now are the sleepiness (even after 12 hours of sleep!) and losing my train of thought if I get distracted. I’m developing coping mechanisms, like making lists, and using even more post-it notes than I did before so I have reminders everywhere. I am also teaching my children that they have to take turns when they want my attention instead of just all talking at once!

Do you see what is absent from the list of side effects? ANYTHING to do with GI issues!! I didn’t realize how miserable I was with my stomach issues on my old magic medicine Xalkori. I dreaded eating every day, and as a stay-at-home-mom, so much of my life centered around planning food, buying food, preparing food, and cleaning up food. We had more dinners of canned soup or takeout than I would like to admit, just because I couldn’t stand the look or smell of cooking food.

But now I LOVE TO EAT!! I look forward to eating! I love the smell of food! Food is wonderful!

Oh in other news, both of my daughters tested positive for Influenza A last week! We were totally floored when they were positive. They had some sniffles, a cough, and a slight fever and we took them in just because of me, since I am “high risk” and wanted to know what I was dealing with. I guess we were lucky that they got it so very mildly. I got to add Tamiflu to my drug cocktail which was a total blast. Thankfully I never caught the bug.

So, if you haven’t heard from me in a while, that’s what has been going on in my world. All in all, things are good

-ish.

Brain Surgery Light v2.0

Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month). 

Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.

The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward. 

The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.

See the marks it left all over me? That thing was ridiculously tight.

I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way. 

Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated. 

The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue. 

I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.

But ya know? It's not easy. So here's the straight dope.

This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again. 

Things that are hard while recovering from "brain surgery light":

- 2 screaming 5 year olds

- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.

- cleaning up a 5 year old's poop accident

- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well

- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head

- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)

- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"

- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.

So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
 

And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)

So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.

And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.

How Cancer Changed Me as a Parent

My amazing little girls just turned four, and I was thrilled to share this milestone with them. There was a time not long ago when I doubted I would see this day.

When I was diagnosed with metastatic lung cancer in the spring of 2013, my son was 4 and my twin girls were newly 2. My daughters were still sleeping in cribs, still and diapers, still my little babies.

That summer my worldview shifted dramatically, and my view of my children growing up followed suit. Now, I no longer mourn the passing days of their childhood. Like many parents, I used to have a twinge of sadness when the little ones passed milestones, knowing that they were one day closer to growing up and leaving home. Now, instead of sadness I feel a twinge of relief and a boatload of joy, for each one is another moment that I am still here to experience. It is as if the faster they grow, the more of their lives I will get to see. As if they could only grow fast enough, they might outpace my cancer.

I was still here to see my girls learn to ride tricycles – and ride they did! First days of school, first time on the bus, first time at a movie theatre, graduating to a big kid bed, getting rid of cribs, learning to use the potty, learning to jump, learning to read, learning to write. All these are achievements not only for my kids, but for our whole family. Because we got to see each of these as a whole family.

I look at my son and I see the baby face disappearing before my eyes, and glimpses of the young man he will become peek out at me.

I see the feisty sprit of my little girl, and her focus and determination resonate in my soul; it’s the same fire that burns in me. Looking in her eyes is looking in a mirror, and I dream of the woman she will one day be.

I snuggle with my daughter, and feel her little fingers gripping mine. Her breathing shifts, her grip loosens, and she drifts off to sleep. These tiny remnants of babyhood surface and fade away.

These fleeting moments….

I remember one day when the girls were infants and Jason and I were ridiculously sleep deprived (like all twin parents) and going a little crazy (like all twin parents). I said to Jason, "Can you imagine if we had an unplanned pregnancy? That is the WORST thing that could happen to this family." He stopped and stared at me. "I can think of much worse things than an unplanned pregnancy that could happen to our family." Oh yeah, perspective. He is so good at that. Who would have guessed that a much worse thing was waiting in the wings?

I think about my young friends whose dreams of having babies have been cut short by cancer. I think of the young children whose futures have been erased by disease. I think of all the moms and dads with cancer who have left this world, leaving small children to grow up without them.

I think of all this, and I celebrate my children growing up. Because I am so proud of the people they are becoming. Because they bring me so much joy. Because I am here to experience it.




Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/03/how-cancer-changed-me-as-a-parent

What Are The Odds

I've been reading a book as research for a wonderfully terrifying endeavor Jason and I are working on* and I came across a section that talks about the poor odds of a small business succeeding.
*More on this soon, I promise! There is lots of good stuff a-brewing.

I couldn't help but chuckle.

That's supposed to scare me? You wanna talk to me about long odds? So I did some digging. (Okay, googling.)

For every 10,000 kids in the US, 1 or 2 will be diagnosed with cancer each year.
That's a 0.01-0.02% chance.

Let's narrow it down to osteosarcoma, my childhood cancer. In the US, there are about 5.6 diagnoses per million people each year.
That's a 0.00056% chance.

About 2 out of 10,000 people will be diagnosed with lung cancer before the age of 40.
That's a 0.02% chance.

Now recall that I have a rare driving mutation, ROS1, that occurs in about 1-2% of non-small cell lung cancer.

Then there are the gulp-worthy stats about lung cancer survival times, and I have already (THANKFULLY, CONTINUING TO KNOCK ON WOOD) made it to the good side of the median.

For something more fun, let's consider the odds of having identical twins: 3 in 1,000, or about 0.3% chance.

The odds of all of these things happening to the same person?!?

All of this is to say that when I read that 80% of small businesses fail within a year, I see that 20% are still around a year later! Those are some of the best odds I've dealt with in a while.

I don't mean to be cocky, it's just that odds have continually proven to be meaningless to me. Also, tomorrow is my 3-month scan, so I think the nerves are making me punchy. Fingers crossed for good results on Tuesday! Let's keep beating the odds.

World Prematurity Day

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011.

I had been in the hospital on bed rest since 28 weeks because of placenta previa. I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes.

Man, I just can't do anything the easy way, can I?

The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think back on what my little girls went through when they were too small to understand what was going on. If they endured it, who am I to complain?

Thank you, Mikaela and Autumn, for teaching me how to fight, how to thrive, and how to beat the odds. You are growing into such fabulous little people who keep me laughing and bursting with love everyday. I am so lucky to be your mom.

PS - I really didn't want to talk about cancer stuff in this post, but I would be remiss if I did not mention that I got my scan results and they were stable. No more shrinkage detected, but no growth either. As I explained in An Exciting Time to Have Cancer, stable is one of the good results of a scan. And if you had forgotten that I was waiting for scan results, then just forget about this PS and go back to admiring my wonderful little girls.

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.