Tuesday, March 30, 2010

Houston...we have a toddler

From Opa January/March
From Opa January/March
We are finally over the GI bug in our house, but what the medical literature and doctors failed to mention was that the virus came with a nasty, lasting side effect: toddlerhood. We call it survivor Atlanta here, and the newest challenge Jeff Probst threw our way is a cranky almost 2 year old. Exacerbated by teething (canine teeth are like metal shards ripping through my son's gums), Miles has learned to rocket from delightful to devilish. Our biggest battles are saying "no" to repeated requests for yogurt and demanding we cease playing "make Mommy's car beep with her keys while doddling in the parking lot." And this all started to hit fever pitch after Miles stopped puking. Timing. Luckily, Miles's ratio of delightful to devilish is still weighted toward keeping us sane. Every day he makes us laugh, and I am amazed at how much goes on in that disproportionally large head.

We've added 3 more words to Miles's "list of words he has added to his vocabulary that he doesn't know he has added." It will be funny one day when he says these words and knows what he means: "potato, balmy and ten." Yeah, yeah...everyone else has 22 month olds reciting Ulysses, and we are still working on articulating "fire truck" and "poop," but lord Miles is cute. Here's some more proof:

We were given 2 loaded CDs of pictures that Opa took when the grand parentals visited to meet Felix for the first time in January and when they came back for Eric's surgery. There are too many (and the file sizes too big) to post all here or even link to all of them in a Picasa album, but I'll leave you with some of our favorite (and a link to a few more in Picasa). Viewing the discs made me realize a few things:

1. Miles's hair is redonk
2. Sometimes Miles looks like he is about ready to hit puberty and not his 2nd birthday
3. The boys are growing way too fast
4. Felix is still hurting for representation in our library of photos (it actually makes me really sad)
5. We need more pictures of a family--even if that means getting my face on film

From Opa January/March

Naked Time!
From Opa January/March
From Opa January/March

Hair today--gone tomorrow
From Opa January/March
From Opa January/March
From Opa January/March

Monkey See, Monkey Do
From Opa January/March

Track stars
From Opa January/March
From Opa January/March

Little Felix
From Opa January/March

Obese Felix
From Opa January/March
Link to album

Finally, a fun (and long) video of Miles being Miles--destroying folded laundry, using my thong as a bracelet, wearing nothing but a shirt and argyle socks while playing in the crib with his "E!" or monkey and Felix...being "Hollywood Miles", and running around naked because, well, that is what he loves to do.

Tuesday, March 23, 2010

There's a rainbow with your name on it out there...

Trouble is, I cannot find where that rainbow is right now.

My friend MBMPHPA (as we lovingly refer to her), sent me the following picture from lil S's first birthday party with today's blog title as the subject. I want so badly to believe in that rainbow (and a huge pot of gold at the end to pay all of my bills, mortgage, and perhaps a nice shopping spree...selfish?)

Ah, this pictures shows the good old days. When my son could eat and not vomit...and the baby slept...and I wore make-up and enjoyed maternity leave....BUT--Eric still had cancer. That's what I keep telling myself to get through the days. Eric is cancer free!!!!! Ah! I want to sing it from the rooftop! (Right after tending to my vomiting son). So let's be honest--life really isn't that bad--just the minute by minute of dealing with this stubborn GI bug right now is a little tiring.

But there was a time tonight, when Miles puked all over Nana two times after a 4 day dry spell that I was almost certain I saw the film crew for Candid Camera. Nah, that's too benign of a show. I am now betting on Ashton and "Punk'd."

In the meantime, let's just celebrate that for the first time in weeks my husband can move his head enough to sleep in our room again. Little rainbows. 

Sunday, March 21, 2010

Nothing says GI bug like flying kites

From Flying kites

Day 5 of intestinal hell. Everyone in our house is sporting pants that are hanging off of our jagged hip bones. No joke. Miles survived the children's ER and is on Zofran and probiotics. I'm trying really hard to remain positive, so I refuse to dwell anymore on how absolutely hideous the last few days have been. Having sick children is soul decaying.

Yesterday we had a brief reprieve and spent the afternoon riding bikes to the park where we played with our new kite and then polished off the night by getting free Italian ice at the local ice shop. (And then Miles took a nose dive and got sick again today). Grandpa was kind enough to get Miles a kite this week and we finally had some sun and wind to play. (I think Dah-Dee liked it the best). I used to fly kites with my Dad and brothers at Upton Park and this just brought back a lot of memories. I hope that we can get out again soon--my kite skills are really lacking.
From Flying kites
From Flying kites
From Flying kites
From Flying kites
From Flying kites

And then to close. A video of our sick weekend. I swear my baby said his first word. Okay, just kidding, but we caught a few moments of his cooing that makes the rough times worth it. It's followed by Miles's new obsession-SCREAMING. I only taped a bit because he got too distracted by Eric's work at putting room darkening shades in his room. You'll notice his hair is slicked back with his own nose slime. And to finish Miles enjoying one of Nana's songs. You can see him "act out" the line "and now he's sick in bed." Too cute. Cuter when he isn't distracted by the camera.

Here's to a better week.


Friday, March 19, 2010

It was the best of times, it was the worst of times

Best of times: Eric's pathology came back CLEAR. His nodes showed no cancer cells. He had 35 removed all together. His healing is remarkable--his speech excellent, and now we just follow up with the doctor every 6 weeks for a few months, and then add on 2 weeks (e.g. every 8 weeks for 6 months, every 10 weeks for 6 months, etc) until we are going every year for the rest of his life. March 9, 2010 is the start to our journey to being "cured." More details later because on to the next crisis--

Worst of times: Miles is declining. He continues to vomit, have diarrhea and now just sits there with his head on your shoulder and has a vacant stare in his eyes. Nana and Dad are bringing him into the ER. I am home with Felix and am a mess. Nana, Dad and Mom are all still dealing with the GI bug. Eric has lost 6lbs, I'm down to my pre pregnancy weight (not the way I wanted to do it), and my mom is probably getting close to her pre pregnancy weight, too. But thank God she is here. Why this is affecting Miles more so than the other kids at school is beyond me.

So, not sure how to celebrate. Let's hope these waves of obstacles subside. I am getting worn really thin.

Thursday, March 18, 2010

Blooper Reel

Today has been downright awful. Miles is not known for sharing well at school, but he sure shared his GI death virus. Both Nana (my mother) and I got puked on multiple times, and then poor Nana felt the wrath and lost her breakfast--and I had my own few dates with the bathroom.

There is nothing like watching your lethargic toddler sit on his Nana's lap at 6am, sit up, smack his lips and then projectile vomit orange pedialyte. Ugh, breaks my heart and turns my tummy just thinking about it.

So the circus continued today. Nana and Miles were on barf duty, and I kept changing my shirt; I had a puke shirt that I wore while caring for Miles and a nursing shirt that I wore while nursing Felix. The laundry is still churning at 9pm tonight as we washed about every piece of cloth in this house. Miles and Nana secluded themselves in the nursery before 7pm to read books and both go to sleep. Poor Nana hasn't eaten since she lost her breakfast and essentially held my son while standing and watching the same Thomas the Tank Engine episode on DVR all day. I am praying tomorrow morning they will emerge from the room with a little more spunk in their steps and color in their lips.

Eric, the recovering patient, had to play nurse and wins Dad and Son-In-Law of the year award. The kid rallied and did as much as he could without contaminating himself. 

This isn't such a funny entry, Ali--where are these so called bloopers?

Okay, in the spirit of trying not to quit as I said in the previous post, and find the humor in life, I thought I would post some funny pictures of late. I need to head into an all nighter with Felix tooting and grunting and the day when we get Eric's path report with some humor and smiles.

First. This will only really resonate with a few WHS Rangers, but I found myself in stitches over the following picture. You have to understand that my high school field hockey team was composed of my best friends--my sisters. The stories we have from each season as well as summer camp are enough to have me wishing I was back in braces dealing with acne and dramatic break-ups. I was thinking of this one particular game after we got a get well/kick cancer's booty card from our friend Sam who penned "HERE WE GO YO!", a phrase she used during field hockey. In this game, one of my best friend's Rebecca got clocked in the head with a ball and in a matter of seconds had an egg on her forehead the size of Montana. And then I was running down the field, feeling a heaviness in my right foot. I looked down and noticed a horseshoe stuck in my cleat. I limped toward the side line and asked the coach, "what do I do Debish--I have a horseshoe in my cleat!" Her response was an eruption of laughter. I couldn't dislodge it and had to run around like a freakin' horse until I was off the field. We won like 50 to nothing and walked away with a catalogue of hilarious stories. Anyway, that game was a comedy of errors beyond those two events and I'll never forget it. Sam somehow found evidence of the game and posted the picture to facebook a day ago. Seriously--she made my week.

Here's another picture of Miles taking the camera into his own hands. No story necessary.
From Beginning of March 2010

And then Miles doing naked dishes. He turned to me and I ran to get the camera; I couldn't have staged it better if I tried.
From Beginning of March 2010
From Beginning of March 2010

Finally, this is how Eric protected himself from the plague all day.
From Beginning of March 2010

If only I could find that horseshoe to put in my sneaker before tomorrow's appointment.

Wednesday, March 17, 2010

Candid Camera?

Seriously, people. Where's the 65 year old B-list celebrity host with the Just for Men comb-over. I HAVE to be on candid camera. The "this is not a funny joke" has gone on too long.

Miles puked for the first time today at school and is now home sick--still puking a bunch (currently, of the foam variety). Some nasty virus is circling his childcare, and he was the next in line of wounded soldiers. Normally this would be a minor inconvenience and one of those times your heart aches because you witness your child in pain...but with a newborn also at home, I am worried he'll adopt the GI wrath. Let's hope breast milk works some magic for Felix.

I am seriously considering initiating breast feeding again with Miles. It's only been 4 or so months since he's been sober.

Oh, and then there is that husband who just had oral surgery and the last thing he needs is a virus making him throw up! He cannot even turn his neck, let alone get in prime retching position.

Maybe I should initiate breast feeding with a 29 year old, too. (Tasteless?)

I am desperate.

But for real. Let's follow Susan Powter and "stop the insanity."

We have to get good news on Friday. If not...I quit.

Tuesday, March 16, 2010

Monkey. Knife. Fight.

Really. What do you think when you see an under 30 year old, in shape man who happens to wear (bow) ties and button downs much of the week with an 8 inch laceration on the side of his neck? We pondered this on our walk around the block last night. Terrible shaving accident? Felix's nails during a colicky episode? Falling on a javelin? But we are going with my brother's suggestion: monkey knife fight.

I know you have all been waiting with baited breath for an update--and I am finally sitting in one spot, freshly showered (still managing that feat every day) foot bouncing Felix in his chair, ready to be "present."

Eric's return home has been great. He has his own make-shift hospital bed on the couch and a house full of willing nurses to answer his ever call and request. Every day things get a little better. His pain is managed by some percocet, but it comes with a nasty side effect: "two face." Oh, you haven't seen that listed on a 'script before? Essentially, he takes the medication and turns into someone else. Generally, that someone else is comatose on the couch. It's hard seeing your husband sort of rot on the couch when you are used to seeing a spry, fit man running around singing, joking and being more productive than anyone I know. That someone else also walks like he is 80 years old, and cannot quite lift his eyelids enough to look like he hasn't had at least 8 beers. With the neck drain bandage, monkey stab wound, and general geriatric malaise he assumes, Miles is very nervous around him. The first few days he wouldn't go into the family room, but then we made strides and had him say "Bye Da-dee" from the stoop into the room. Next, family hugs, and then we have graduated this week to having Miles sit on Daddy's lap for story time at night. Luckily, Felix is no worse from the wear. He just rolls with it. And I completely intended that "rolls" pun.
From Beginning of March 2010

Eric's speech is awesome. I say that because I was certain we would be baby sign-"languaging" still, or at least using a white board to communicate. I rarely ask him to repeat himself. But, it is not anything like before. With the copious amounts of spit and crooked numb tongue, he sounds like a prime candidate for any middle schooler to poke inappropriate jokes at. Actually, I wouldn't put it past high schoolers to make fun of his voice, either.

Right now we are in waiting purgatory. We won't know the results of his node pathology until his appointment on Friday. It is an awful feeling knowing that the results or sitting somewhere and we cannot have access to them. Kind of feels like they are stolen--like, isn't that our property? But the surgeon does not like to discuss anything over the phone. This is what I was told yesterday and today by his nurse. Part of me doesn't like that response because it makes me feel like something bad is coming. But yesterday I was told that even before I gave the admin Eric's name. Let's keep the prayers coming, folks.

Eric's fear of losing rapids amount of wait have not been realized too much. He is down to 138lb, but is only 5 or so pounds from normal! I think he is going to swear off smoothies, Odwalla, milkshakes and applesauce soon. He still cannot chew, so consumes everything by shoving it to the back of his throat and swallowing.

We've had a steady stream of visitors which has been great. It wears him out at times, but I think it feels so good to see fresh faces. We do make it around the block every night for a walk, and Eric is going to try to make it to the track meet tomorrow, but I'll have to be his body guard. Knowing Eric, he may try to jump in one of the events, or take over announcing results or something. Plus, I am sure there will be lots of hugs and interest in the walking monkey knife wound.

Eric's sister and brother-in-law left Friday and his parents left early Sunday morning (while Eric was in one of his percocet comas), but my mom is still here. I don't know how we would have done this without their help. With Miles being home for the week on spring break, and oh yeah, that 11lb infant I need to take care of, we needed all the hands we could get! Eric's Dad was on hospital night duty, and Eric's mom was Jill of all trades while his sister quickly became Miles's newest girlfriend. The weather wasn't cooperating, so when cabin fever really hit, they spent the day with the boys at the mall. Miles loved throwing money into the fountain,
From Beginning of March 2010
From Beginning of March 2010
riding the escalator,
From Beginning of March 2010
riding in the mall car,
From Beginning of March 2010
and eating at the food court.
From Beginning of March 2010
Felix even apparently got the luxury treatment and had a diaper change in Nordstrom's!
From Beginning of March 2010

And I need to just acknowledge Carol and Marybeth (I am using full first names here--they deserve the kudos!) for keeping me from stealing Eric's percocet for myself. The adrenaline has worn off and now I am realizing that I am having a hard time keeping everything together. It doesn't help that Miles is still getting up every night and Felix's fussy time is still for a few hours at night (2 nights ago I was up calming him from 7:30pm until almost 3am!)

The well wishes and support continues. I have received messages on Facebook from the most unlikely people, and it continues to warm my heart. Mama Schlotty sent just about the best care package--full of things for the kids (see pics of Miles with the play-dough--and his insane cowlick)
From Beginning of March 2010
From Beginning of March 2010
as well as for the couple. Eric and I are filling out some fun questions in a journal to share with each other, and I have some pleasure reading that doesn't involve colic or cancer! And we got a gift of a family pass to the Atlanta Zoo! (I still haven't even acknowledged it from the W family--that's how far behind on e-mail I am). And lots of meals coming as well as some of the most amazing cards. And yet another random power of prayer story: Eric's cousin's wife's mother (you follow?) in Ohio received a prayer e-mail for Eric from a mother's group at Eric's school in Atlanta. CRAZY!

 I would like to take a moment to remove myself from all of our own drama and send good wishes and blessings to my friend Mama S.M. who gave birth to her little boy while on vacation in FL at 29 weeks! He is doing remarkably well, and as a mom of 2 little early bird boys, have a huge heart to go out to her. Part of Eric's and my goal is to give back since we have received so much. I send all my love and support to the new family (and hope to send some preemie clothes soon, too!). And perhaps if you find yourself sending us good vibes, you can give a shout out for this little boy's continued good health.

And to end, here are some pictures of the boys. The first two are are examples of Felix, his milk cheeks and one wonky eyebrow. And the second is a picture that Miles took of himself. It makes me crack up. I fall more and more in love with these boys. Updated March pictures here. 
From Beginning of March 2010
From Beginning of March 2010
From Beginning of March 2010

Thursday, March 11, 2010

"No hot food, sandwiches, or popcorn in the waiting area"

I did a double take at the warning sign in the surgery waiting room. At first I thought I was delusional beacuse I had been up since 4am, but then I looked again and the sign really did say "No hot food, sandwiches, or popcorn in the waiting area."

Folks, this isn't the movies, but I would love to hear the back story to what prompted the popcorn warning; does anyone else find this funny?

I guess that is the general theme of the day of Eric's surgery, "does anyone else find this funny?"

Cancer licks. Surgery is scary. Pre-op areas are crowded and depressing. Waiting areas are tense and tend to have limited reading materials. Seeing loved ones chopped into and doped up is heart breaking. This all is a recipe for a really awful day, so Eric and I took it upon ourselves to intentionally find the humor in any and every situation.
Our day started with Miles's own personal cheerleading session that disguised itself as blood curdling crying a few times in the middle of the night. What a thoughtful child. I didn't get to ask my husband to whisper sweet nothings into my ear all night so I could remember the way he talked. Instead, I was hooked up to 9 week old as my husband chair surfed in Miles's room. The humor in this situation is that...wait, there is no humor in our house between the hours of 7pm and 5am.

We planned to head to Emory for our 5:30am same day surgery call, but were a little late in getting out of the door as Eric lost his glasses. He has never lost his glasses before. Of all days, really? The humor is more situational here--not "ha ha" funny. Right before we left, I whipped out my pricey strand of pearls Eric gave me for one of our Christmases (since his diagnosis, I had already been wearing the matching pearls he got me for our anniversary years back) and slipped on his wedding ring. No metal during surgery. And no Lance Armstrong wristlet. Nothing says cancer like pearls, no? I also put on my TEAM HEINTZ Northface top and Felix wore his (Miles's old) organic TEAM HEINTZ onesie. I didn't have time get something screen printed for Miles. I will have to do that soon. He is an integral part of our team! I was hoping my request for a TEAM HEINTZ hospital gown would come through. I'm sure if Oprah had tongue cancer, she would get a personalized gown.

We got to pre-op and were surprised at how many people were there waiting. After reading Anderson Cooper's bio on Wikipedia on Eric's new phone, we were called back by our pre-op nurse. We actually were collected as a group of 5 patients and support persons. As such, we got placed next to a woman who was having surgery that I don't think she wanted anyone else to hear about. But we did. We laughed that you sign all this HIPPA privacy paperwork, and yet there is this tiny cloth curtain separating us from the woman getting infected mesh removed from her...let's just stop right there.

Quickly we brainstormed the various ways pre-op could be improved and made a pitch to our pre-op nurse. I think she was almost convinced. We will be submitting to Emory Hosptial shortly:
  • Normal saline IV should be buttermilk pancake flavor
  • Installation of dentist office posters on the ceiling. (I remember the ones at my hygentist's office; it was the history of dentistry in cartoons. That, and I believe when I was really little they also had a poster of a fluffy kitten pouncing on a yellow flower--clearly a "throw down" (as Bob Deysher refers to freebies) from a Scholastic book drive after you have purchased $15 in books and a Highlights magazine subscription.)
  • Manis and pedis should be offered to all patients, and their 1 support person
  • The blue berets for the hair should have sizes
  • Option to have a foam roller for under the knee, or ability to put in a request that during surgery the circulating nurse would use "the stick" on the patients leg muscles
  • A running TV loop of Save By The Bell (SBTB) episodes--specifically the Zack Attack broken leg episode. Eric and I commented how Zack's hospital stay was a far cry from ours.
To keep the mood light, we just started throwing jokes around to anyone who would listen. Unfortunately, we forgot that anesthesiologists and surgeons don't have senses of humor. Although they could certainly afford to by them, they apparently they don't have time for them.

Eric and I had discussed the possibility of Skyping during surgery. So I took it upon myself to pose the question to Dr W.

Ali: "Do you have skype in the OR? Like, could you put a camera on your head so I can watch the whole thing?"

Dr W.: (silence)


Eric: "Perhaps there is a viewing panel at the top where you can eat junior mints."
This Seinfeld reference was lost on everyone in the room. And if it doesn't resonate wtih you here, I have no interest in retelling the episode. Google it or something.

Dr W: "You don't want to watch your loved one be operated on."

Ali: "Speak for yourself." I thought, do you know how many ingrown leg hairs I have removed from him during his running/cycling days?

Dr W pulled out his marking pen.
Eric: "Perfect, green is my lucky color."
Dr W: "Sorry, it's actually purple. The outside is just green."

ouch. Strike 2.
Dr W drew on his cancer tongue and then wrote in huge letters on his neck, YES. I've heard about surgeons operating on incorrect body parts, so I guess this was a good idea. I just thought it was funny.

Eric got a shot of some happy juice cocktail and the anesthesiology resident wheeled him out of  pre-op. I was a little nervous because she kept bumping into things with the stretcher. If her driving was any indication of her anesthesiology work, I needed to find a lawyer fast. The next thing I know, the nurse is shuffling me into the waiting area and Eric is heading back into the land of make believe. WAIT! I needed to say good-bye. On TV the farewells are much more dramatic and drawn out.

Ali: "Can I give him a kiss?"
Nurse: "Oh, sure!"
Eric: "No tongue babe, I don't want to give you cancer."
Ali: "ERIC! Please watch out for my husband. He's cheeky."

And then we waited. I had guests visit, Eric's parents chill with me in the popcorn free zone, and a trip back home to see Miles, Felix and my breast pump. It really didn't go by as slowly as I had thought it would. The surgeon came out and said that things went exactly as we had talked about:
  • 15% of the tongue removed. Clean margins. Tongue cancer was completely taken out.
  • All lymph nodes on the left side are gone. They were swollen, but could be residual from biopsy. Path report forthcoming (we hope in a few days)
  • Scope procedures did not show any secondary cancer
And Dr W said he would heal well. That his being a teacher will force him to use his tongue and promote healing. That his hospital stay would probably only be 3 or so days. And that he looked pretty good. Not too bad! Kinda sexy neck scar, no? We haven't really seen the no longer cancer tongue, but he had minimal bleeding.

We are all anxious to get the path results of his nodes--please keep your fingers, toes and eyes crossed that they are favorable.

And so the recovery began and continues as I finish this post. He is finally talking a fair bit and just sounds like he has a mouth stuffed with marshmallows. He moved from morphine to a percocet/tylenol cocktail and is on 2 antibiotics. The only tenuous moment was when he got up for the first time to go to the bathroom, got all sweaty, felt ringing in the ears, and was about to pass out. His systolic blood pressure was only 60! they quickly got him back to bed and luckily since then has been fine. Today he even ate (correction, swallowed) lasagna and ravioli. Essentially, he can eat it if it doesn't involve any chewing. And another funny thing--Eric totally has his own mouthfrida! If you are not a regular blog follower, this is totally flying over your head at 30, 000 feet, but Eric has this suction tube to clean out his mouth of mucus, blood, ravioli remnants, gremlins, or whatever else is hiding in his oral cavity...and it totally reminds me of an electric nosefrida. I told Eric I could "mouthfrida" him at home with our nosefrida. I think he threw up a bit in his mouth. And then used the electric mouthfrida to remove it.

He's had a steady stream of visitors, which is helpful because after Saved By The Bell is over at 9am, the days are really LONG. I haven't really been able to spend quality time with him as I am on Mommy duty. I am really torn--really struggling because I want to be there for everyone as much as possible. I want to provide stability and normalcy for Miles and Felix, but also stay with Eric 24/7. Eric and I did talk pre-surgery that my first role would be to care for the kids. And the truth is that as a nursing mom of a newborn, I am controlled by my mammary glands and cannot spend much time with Eric, unless I set up the milk shop at the hospital (hello nosocomial infectious agents!) or parking lot. I am so glad that Eric's parents are here to stay with Eric, but do find it hard at times to not be the one there with him.

Let me end by saying that I am so far behind on personal correspondances and hope to spend the next 2 weeks regaining composure and control over our lives. Blanket thank yous are not usually the way I operate, but THANK YOU world. Because I truly feel like the world is supporting us right now. Like, instead of free Tibet bumper stickers, I'm going to start seeing "We love you Eric" ones. This has been a circus, and sometimes I feel like the incompetent ring leader. Driving home from the hospital today, I had to call my mother to get me through the drive because I thought I was going to either pass out or fall asleep. Days are long over here. Especially as Miles is now getting up multiple times a night, starting his day at 5am, and I am still doing the colic dance with Felix for hours a night. But I tell you I would do it all again and again for the rest of my life if it meant that everyone in my family is/will be happy and healthy. And Miles grounds me as multiple times throughout the day, he'll just blurt out, "My Da-dee!" It was the first thing he said to me as I pulled him out of his crib at 5:30am, "DADDY!"

Finally, my brother Seth sent me this phone picture yesterday. Our family and close friends in Atlanta are all wearing Livestrong wristlets (I use that term to make it less gendered) until Eric is considered cured of cancer--may be a good 5 years. Therefore, we may be wearing these longer than many first marriages (at least in Hollywood.) (PS--I have quite a few left if anyone wants one!) For some reason, seeing my brother wearing his wristlet made me cry at the hospital when I received it. I cannot quite place the emotion(s) that lead me to tears. But the question is, does it really matter?

Monday, March 8, 2010

Sasquatch and a Meerkat walked into a bar...

Eric asked that I post about our son's ever expanding vocabulary the day before he has his tongue hacked into...I do as he pleases. Don't mess with a man with cancer.

But first, little c update.

1pm. No word from the scheduler.
2pm. No word from the scheduler.
2:30pm. No word from the scheduler. (You noticing a pattern?)
2:31pm. Ali calls and leaves a message with the otolaryngology.
3pm and some change. Eric leaves a message with otolaryngology.
4:45pm. Eric leaves another message with otolaryngology.

Hmm. Yolanda didn't come through today. She said she would call regardless, and she didn't. Perhaps she was sick; I don't know, but I am frustrated. We had our pre-op on Friday and all of our paperwork indicates surgery on the 9th, so that is what we are going with. Surgery at 7:30am (give or take a few hours. You know how those surgeons like their beauty sleep.) Report time: 5:30am. Ouch. Total time approximately 4 hours. Thank GOD Eric's parents are here and can man the waiting room with me. I'll have to leave a few times to either nurse or pump or both. Miles and Felix will be loved on by many of their ELC girlfriends. It is Marist's break, but the women of the Miles's childcare are getting together for some knitting lessons at the ELC, and they'll tote around my two gassy boys. I love them. Yes, the boys, but also the women of the ELC. They are family. I remember my friend J.E. saying, "I know JoAnn will be at [my son's] wedding." I think the exact same thing. Let's hope her son and Miles/Felix choose different wedding dates.

I can't eat. I am sure I won't sleep--wait, I don't do that anyway--sweet! No change there. Should I ask Eric to talk to me all night so I can remember his unadulterated speech? What does one do when her husband is going to lose a portion of his tongue? Perhaps they have an "app" for that...I'll look into it.

We spent most of the day outside. Sunny and 70. That's right, be jealous. Visiting Da-dee at track practice, playing on the turf, flinging long jump sand around, raking, drying diapers, shooting feral cats with a BB gun (no, seriously), blowing bubbles, painting the stairs with water (correction, dumping the pail of water aka "paint" into a puddle in which to play in), running around without a shirt (Miles), which turned into running around without pants (still just Miles), which turned into a soggy diaper, eating ice cream (or tart lemon sorbet for breatharian Manu) at the Frosty Caboose, and watching Marta/Trains/Planes. It was GREAT!

While I was changing Miles outside in the grass (note soggy diaper incident above), he said to me "Sasquatch." No joke. What he probably meant was, "Wow, look at the sky, Manu. I love trains. Do you know where Da-dee went? I want ice in my Tilty." Miles's vocabulary is expanding pretty well considering, but he still spews gibberish where we know he thinks he is actually saying something meaningful, but he happens to say other random words in the English language. On our fridge we have list of words Miles has said (that needs some serious updating), but now we are going to start a list of words Miles has said but hasn't meant to. Here are the newest additions:
  • Sasquatch
  • Meerkat
  • Ocean
  • Trebuchet (our favorite)
I think the reason Eric wanted me to post about this because THIS is what life is about. THIS is what makes us smile and forget about tongue cancer. THIS is the silliness that we live for. 

Wish us luck. And when you brush your teeth tomorrow morning, appreciate your tongue. You never know when 20% of it could be taken from you.

Thursday, March 4, 2010


From Beginning of March 2010
Ladies and gentleman, babies and toddlers--the word of the day is OVERFLOW.

I cannot think of a more apt way to describe our lives right now. There is an overflow of everything--good (blue) and bad (purple). Here's the list:

1. Chunk. There is a overflow of chunky baby butter love. And by association, breastmilk! Any breastfeeding mother knows that deep dark fear of having a supply issue, and despite my size (as Eric kindly assessed, "smaller than before"), and never really feeling "full," this kid is getting his sustenance.
From Beginning of March 2010
Felonious Chunk had his 2 month appointment today and he is just chugging (nursing) along, looking great! He is 11lbs, 22 inches long. That puts him at the 60th percentile for weight, folks. His head jumped to the 19th percentile. I still marvel at how Eric and I have a chunky baby, especially given that he was premature and was supposed to have catching up to do. I clearly don't know how to manage the rolls as the pediatrician noticed some yeast in one of his cracks. (Okay, I just re-read that and realized that the only reason I didn't gag at writing "yeast in one of his cracks" is because this baby is just too delicious and amazing to be grossed out.) I guess it is normal, it just looks a little shiny and red, but  I kind of felt embarrassed. I remember in nursing school bed bathing a 400 lb woman, and finding refuse from like 4 years ago hibernating under the ga-jillienth breast fold--yes, ga-jillienth is a number--wondering how anyone could let themselves get to such a dire state. And then I had visions of this baby getting rolls so bountiful that he wouldn't be able to bend his knees or turn his head--we'd have to start tube feeding him because the fast would clog up his trachea and we'd be on Entertainment Tonight followed by Dr Phil for world's fattest baby, and people would think the same thing about me.
From Beginning of March 2010

2. Nursing issues. Hold on, Ali. I see the pictures above. How is there a nursing problem? I don't know if it is a weak latch, tongue problem (apparently they run in our family), over supply, rapid let-down, or digestive maelstrom, but nursing is not easy for Felix. Although, he attempts it every hour TWENTY-FOUR HOURS A DAY (read: overflow). He swallows air, gags, panics, squeals, and then writhes in pain until a lot of time he passes out, only to wake up with gas. The pediatrician said it is normal and he'll grow out of it. I asked, "what are the chances he'll grow out of it by next Tuesday?" His response was a laugh. Yeah, I get it. Miles caught on to nursing and bottles pretty easily, but Felix is having trouble. I'm not sure where to go with this one, but let's just say that nursing isn't this 45 minute dream time where we cuddle, coo and bond. Ah well. Oh, and bottles? It's like I am insulting child when I tried giving him one. How dare you stick that rubber nipple in my mouth. I can just see "Puh-LEAZE" written all over his face. He better get used to one soon--like by tonight, because I have a hot date with a consignment sale. And let's be honest, worst case scenario, he won't starve tonight. He may cry all night for Eric, but he has enough butter on his thighs to feed his systen for months. Heck, we could all "live off the fat" of Felix's land for a good week. (First she compares toddlers to cancer in her last post, and now she is going cannibal with her newborn. Take her uterus out now!)

I could add a part 2b. to this one and revisit colic, but hear no evil, see no evil, write no evil. They say what you don't acknowledge you cannot fix. But we've acknowledged it for weeks and it hasn't been "fixed." So, I am ignoring it, hoping it gets the message. (I'm also going to start the breatharian diet again. Air, brown rice and chicken. Anyone got any good recipes for those 3 ingredients? Yeah, I didn't think so. At least I'll shed the last of my pregnancy weight.)

And 2c. could be Miles's sleep regression. But we are ignoring that, too.

3. Smiles. When Felix isn't in digestive hell, he has started blessing us with the most amazing open-mouthed smiles. I have been awful with taking pictures, but I need to start documenting this time more because you'll start pooing cartoons (as they said on the Bachelor this season--yes, my mother-in-law got me hooked on watching for the first time, some of the most soul decaying reality television. Vienna? What was Jake thinking?) because his smiles are so infectious.The smirks were enough for me to keep him after staying up every night, but the new gummy smiles may just be enough to get me to potty training without a nervous breakdown. The only downside, besides hearing myself talk to the child like a high pitched loony goon, is that he gets so worked up, he swallows air, wants to nurse, and then...just go reference #2 above.

4. Laundry and dirt. My house is a wreck. Ever seen the show Hoarders on A&E? I'll be applying shortly. It's not that I want to collect stuff, it's just that I don't have time to deal with any of it. The paperwork, toys, laundry, dishes, dirt...my life is overflowing with STUFF...and I hate it. I did pack up my maternity clothing to store in case we ever want to go completely gray and have another child, but how much do you want to bet they will sit on my floor, folded for at least a week before we get up into the attic to put them away? The real problem is that most of my non-maternity clothes are still up in the attic, too (not that the pants could fit, yet), so my wardrobe offerings are limited. Good thing the Cancer Warrior uniform is PJs.

5. GENEROSITY. I don't even know where to begin. We are overflowing with support here on Vanet Road. Outside of the hundreds of e-mails, facebook messages and snail mail we have received in support of Eric, we have also been blessed with some amazing gifts:
  • Lance Armstrong LIVESTRONG bracelets courtesy of Heather
  • A huge package of "Ninja Juice" (highly potent wolfberry antioxidant drink) and some Frankincense organic oil (aromatherapy) courtesy of Tracey
  • Meals provided by Eric's school
  • Meals soon to be provided by our neighborhood mother's club
  • An enormous box of organic produce courtesy of a wonderful friend of mine, Brooke, from growing up
  • An anonymous Kroger grocery store gift card courtesy of the universe?
  • Movie tickets from some people at Eric's work
  • Lunch date tabs picked up by amazing friends Carol and Co. and MB and co.
  • A house cleaning appointment AND acupuncture for Eric gifted by Meaghan
  • Inspirational books for both me and Eric courtesy of Roy and Jenni
  • Prayer chains across the country...perhaps even other countries?
  • Babysitting offers from just about every female I come in contact with
  • A weekend stay at a Marist Family's lake house
  • Running skirt for the Mama, much to Eric's dismay, courtesy of Studs
  • An operating room on the 9th offered up by a Marist parent who is an oncologist. (He said he is giving it to our surgeon for the 9th--still not a sure bet, but I am hoping that makes the 50/50 odds unbalanced in our favor!)
  • Stories. I have had a number of people send me stories about their own struggles, but also fun stories about their past with me. A high school English teacher, a college friend I lost touch with, and even one of the first friends I ever had (Sarah), have all e-mailed me with stories about their time with me earlier in life. Even though it doesn't directly relate to Eric's situation, I cannot tell you what sharing past moments has done for my own spirit, and in turn, my ability to lift up Eric's spirit. And I also need to acknowledge another Sara and Karen, who are also Cancer Warriors, who keep me grounded and are shepherding me emotionally through this unpredictable and overwhelming process.
I still try to acknowledge at least 3 e-mails/messages a day, but am getting so behind. We are actually still getting lovely notes and gifts for Felix, so our thank you note list is just growing exponentially. And it's not about the "stuff"--please keep me from going on Hoarders! And PLEASE don't feel compelled to add to my bullet list, but I need to acknowledge in a public way the bounty of support we've received. It's about the thought, the care and the concern.

I cannot tell you how many people are in line to help out--close friends, family, friends from graduate school, from work, mother's from Eric's track team, Eric's co-workers, Miles's childcare staff...even complete strangers.

A wonderful story to end on: Eric conducts a weekly adult running group on Tuesday nights. One of his runners said she was going to a fish fry at a local catholic middle school. This is a school I had actually never heard of (Eric and I have no connections with it), but apparently is a local school. As she was in line to get her food, she saw the prayer wall and guess whose name was on it? Eric's. How it got there, we have no idea.

Doesn't it take your breath away?

I knew this guy was special. I knew he was loved...and perhaps there is something magical about Eric being able to see it for himself during his lifetime.
From Beginning of March 2010
(A few beginning of march photos here.)

Monday, March 1, 2010

Cancer is like a toddler: unpredictable and can drive you nuts...

But at least with a toddler, you love him at the end of the day. Our little artist has gifted us with quite a few fridge masterpieces this week! And listen, before you dismiss me as a good mother, I KNOW toddlers shouldn't be compared to cancer. It's just that this whole post Title responsibility is getting more difficult with our current family struggles.
From ELC
From ELC
I'm not sure if the forces that be think I can handle more (I can't) but the terrible twos are setting in. (It's like I'm down on the ground with seeping wounds, and then someone comes along and douses me with lemon juice.) We haven't hit the epic head banging, throwing rocks kinda tantrums, but Miles fusses like crazy. (And I cannot even believe I am writing it, but the child has biten his friend at school.) He hits this decible that most can probably tolerate, but as his mother, I am genetically programmed to start getting immediate heartburn, regurgitating impatiance and frustration. The worst is that he is a total faker--drama king. Much like a career in hair design or sanitation control I am betting Miles will adopt, I've told him actors don't make great livings. He hasn't bought it, yet.   Even though his language is still so primative, we are almost always sure of what he is trying to communicate. More than not it is one of two things: I want more carbohydrates or I want to watch a YouTube video. I keep patting ourselves on the back for not introducing television, but YouTube is getting just as bad. Thankfully Jason Mraz is now accompanied by India Arie, Feist and Jack Johnson.

The brilliant thing about toddlers is that they are more independent.
The not so brilliant thing about toddlers is that they think they are a lot more independent than they actually are.

Miles is at the wonderful stage where you can tell him to do something, he understands you, and will do it. Chores are still fun. He willingly throws trash away, recycles, washes his hands, cleans dishes, puts his Tilty cup in the fridge, does "prayer hands" at meals, burps the baby (or at least his Grover doll) brushes his teeth and puts his laundry in the hamper every night, and gives kisses to the whole family on demand.

Miles is at the awful stage where he's lost half of his play silverwear to recycling them when we are not looking, turns the water on and off incessantly while washing his hands and brushing teeth, demands you let him keep the water running while washing dishes--oh, and washes the floor at the same time, requests you open and close the fridge so he can put his Tilty in and out 100 times, puts his blocks or even the nail clipper in his hamper not to be discovered until after the load has been completed, and requires rounds and rounds of kisses and "family hugs" every night even after you've told him "ni-night". (Sometimes, there has to be a limit to kisses. We'd be smooching until midnight if not!)

And when you don't acquiesce? The decibel moan starts...and doesn't stop. Crocodile tears, going boneless...he's relentless.

The worst is that now he has decided he is big enough  NOT to hold Mommy's hand while in parking lots and it takes is 20 minutes to walk 200 feet to visit his Dah-Dee on the track every day. We even try the "Okay, Miles. Bye bye! See you later," hoping he'll run and follow us. And he's all, "Bye-Bye!" And off he goes.

We baked homemade chocolate chip cookies for the first time this weekend, and despite a floor dusted in flour and a few rogue chocolate chips that made it to his mouth (he has not had chocolate like that before), the cookies are AMAZING. And we gave him a bite of one, and now he is constantly signing "cookie!" and even knows where we hid them. He'll saunter off when we are not looking and pine for a "cookie" until we tell him "no" and then he dissolves until the decibel cry.

The most challenging part is when he looks you square in the eye as he is misbehaving. And he grins the whole time. He'll start putting his legs up on our coffee table, smiling at us as we firmly say "NO!" What's hard is Eric and I find ourselves laughing a lot of the time. It's hard not to encourage it--sometimes, it's just funny.

Unpredictable? Oh yes. Maybe it is because some of the kids at his childcare are potty training (oh, we are not even CLOSE to that. Let's wait a year or so. Miles could sit in his poop for days if we let him), but he has started putting his hands down the back of his diaper. And then it happened. Eric and I were watching Canada vs USA hockey on the DVR, and Miles was playing in the portable crib that will eventually be Felix's crib. We filled it with all the soft toys we could find, and covered it with a play mat to create a fort. He found an old pacifier and puts it in his mouth and just let it hang there. We turned to see that Miles was okay in his playland, and we see his head popping out, with the mat/cover resting on his head, the pacifier dangling from his mouth, and HIS DIAPER IN HIS HAND. And wouldn't you know that kid had a grin the size of the Pacific Ocean on his face. And you know what? Eric and I errupted in laughter. And that's when it started. This kid tries to take his diaper off all of the time now.

He's an exhibitionist, people. Loves his bare skin. We took off his shirt tonight b/c we (ahem, Eric) spilled his fish oil supplement on it and we needed to launder it quickly. Miles ran around the house singing some sort of Me-lez song, brushing his bare chest with his hands, enjoying the feel of being shirtless. It is moments like those that are burned in my memory.

The unfortunate part of the unpredictability is that the past 2 nights he has graced us with his presence at 2am. Correction--graced Eric. I'm already up with Felonious. I have no idea what his deal is, but he gets up and cries, and then Eric works to get him go back to sleep for at least an hour. Sleep regression? Perhaps he is feeling left out of our pajama party? I don't know, but we have worked SO hard to get this child to sleep from 7:15am until 6am, and I feel like we are at square one again.

With the intensity that I despise his tantrums and fussing, I love his silliness and idiosyncracies. That's why we don't all return them for a refund at one and a half to two years.

Finally, speaking to the whole cancer being unpredictable, I should rephrase and say it is the treatment. Eric's surgery was moved from the 17th to the 24th...until the scheduler called Friday afternoon and said we could be on stand-by for the 9th. Eric said no at first because it wasn't convenient for us in terms of getting care for the kids, his work requirements and track schedule. And then his tongue started hurting more over the weekend and we spent Friday night for the first time since his diagnosis talking about the whole little c and what it means in our life. I think Eric has been in denial--and his life has been so busy with activity, he hasn't had to think about it as much as I have. Remember, I spend my days as his Cancer Warrior (I wouldn't have it any other way), drowning in scheduling, researching, organizing, etc. It's overwhelming.

And then I told him cancer isn't convenient, and we agreed that we should gamble and go for the 9th. I left a message with the scheduler over the weekend, and she kindly called me Monday morning. So, we have a 50/50 chance of going on the 9th. It all depends on if there is a last minute emergency (e.g. transplant). The worst part is that we won't find out until after 1pm the day before. In all honesty, I am praying for it to happen on the 9th. I'm sick of waiting...sick of that thing on Eric's tongue bothering him. It's like a cancer, growing slowly and sucking the life out of him. Oh, wait. It IS cancer.

Pre-op will happen this Friday no matter what. And then, we wait and pray it happens on the 9th. And if it doesn't, we deal with that hurdle just like we have dealt with all the rest. Right now I am in the throes of making sure the boys have care for them in any situation. Oh yeah, and my maternity leave is just about up. I'm not quite sure how we'll get through March.

NOTE TO SELF: having two boys 19 months apart is a wild, outrageously crazy, fun, and bold adventure; but I don't recommend one of the parental units being diagnosed with cancer before your 2nd child even hits 2 months old. It can drive you nuts...