Thursday, February 25, 2010
It's not Ali-Cat anymore, it's Copy-Cat. My friend's blog was just redesigned, and it totally inspired me. I hated my original, hard to read template I chose back in 2007...but then there was that whole complicated first pregnancy...then second high risk pregnancy...and now little c. But now I have a sleeping baby on my chest, cleaned out my Google reader, and am uninspired by Olympic figure skating...and then I saw J's blog and got inspired. I still need to put some pictures up on the banner, but that requires a different computer and software download.
And now I am on the hunt for a new blog name. The floor is open for suggestions.
PS-we both got our direction from Clover Lane's blog. Mad props are due.
Wednesday, February 24, 2010
I had one of those days where I was on the verge of going postal a handful of times, each time quelled by some act of compassion, organization or hilarity (is there such thing as an act of hilarity? If not, I claim it as my invention. Do you think I can earn royalties on it? We got some serious bills to pay...)
I did yet another indulgent thing and took time out from Cancer Warrior and went to a breastfeeding support group with the most wonderful neighborhood friend (AS) and her angelic daughter. I debated whether or not I wanted to go 1) because Felix is so colicky and the last thing I needed was a room full of hormonal women and their idyllic babies waxing poetic about how their newborns are perfect 100% of the time (you mean they slept through the night at 2 weeks AND started changing their own diapers at 4 weeks?), and 2) because I was waiting for Eric's test results and surgery scheduling call and just knew it would happen while I was gone.
I was right about one of those worries--wouldn't you know Emory calls me while I am in sitting in the huge circle of boobs and babies. When my phone rang, I lept up like my pants were on fire and didn't even think about the fact I was going to just leave Felix rolling around on the ground by himself. Cancer does crazy things to you like that. Luckily, AS said, "I'll watch Felix!" Oh yeah...that would be good!
Yolanda at Dr W's ENT office was perfectly nice, but didn' t have the news I wanted to hear--"the Dr's schedule is booked and you'll probably have to wait until the 17th for surgery." Pre-op on the 15th. $hit (yes, I said this in my head. $1 for the fowe jar, and I may have just lost a few readers)-- I also don't have a pen to write this down! There was a pen in my car, about 40 miles away in the parking lot, and I imagine one of the milking machines in the room had a pen, but didn't think I could walk into the circle of about 30 women talking about breast compressions and engorgement, on my cell and say, "does anyone have a pen?" Maybe I could somehow scratch the details in my arm with Felix's lethal nails? Was there something I could do with my breastmilk? I mean, that stuff is like miracle serum...it can solve any problem. Well, not this one. I had to rely on the power of my rotting new mother brain to remember the details. Note to self: when you are a Cancer Warrior ALWAYS carry a pen around with you.
I asked if she could give me the PET/CT results, and she said she is just the scheduler, but she'll e-mail Dr W to ask.
Back to group. I didn't ask any questions or really provide more than physical presence to the group because I somehow knew if I said something it would go like this:
"So, Felix is having tummy trouble. I think he is colicky and has stanky gas...he rips on and off the breast because the second the milk hits his tummy, and I can hear air and milk swish around in his hernia--oh yes, I can hear it there--he is in pain. Oh, and my husband has cancer."
And then, you just know I would lose it and weep like a small child, yearning for one of the other mother's pillowy breasts to cry into. Too much? But I am glad I went. The leader at the end came over to me and just had epic wisdom and compassion that had me in tears on the way out. We didn't talk about little c, but she started by commenting how beautiful Felix is and how his cheeks are amazing. THAT'S how you win over a Mom--compliment her baby--make her feel like her job as the milk machine is working. Anyway, I intend on going back next week. It will be sad when I start work and cannot go anymore.
I got home, ate some fiber and drank some water (the extent of my breastfeeding diet right now), and put on my Cancer Warrior gear again, which consists of a nursing tank an pj pants. I e-mailed the nurse coordinator to see if she could mail me the MRI results and get me the PET/CT scans. She could do the former, but said not the latter because she was just involved in the MRI study. So I called Dr W's office and asked for the results as well as a report of his case being presented at tumor board. They passed along my request and said a nurse would call back.
Wait. Wait. Wait. Wait.
Yolanda calls back. Um, that's not good. She was just there to schedule surgery--what's this about? Apparently, Dr W's outlook shows he is out all of the 17th, even though the other schedule she was working from indicated he was free. We may have to push surgery to the 24th. FOR REAL? Come on, I love Eric's tongue, but let's cut this cancer out ASAP. I tried to remind myself that if it was a true emergency, they would have him on the table tomorrow...but without the PET/CT scan results, I felt like I didn't know that for sure. Pillow anyone? I needed to scream.
I call Dr W's office again and listen to the "you are on hold message" of how I can get $1000 off LASIK surgery at Emory for a limited time. You know what is supremely annoying? When someone live comes on and says, "Emory ENT, can you hold?" WHAT DO YOU THINK I WAS DOING FOR THE PAST 10 MINUTES? Why don't you just keep me listening to the LASIK message until you are good and ready to talk. I leave another message asking for the results of the PET/CT and tumor board.
At this point, I feel like I am running the risk of becoming "that" patient advocate. I know no one would withould information as punishment for me being crazed, but it did cross my mind. It's just that when you feel so out of control, you need to "do" things that at least give you the semblance of control. I had a phone number, so I was going to keep calling it until the other end gave me the information I needed.
Self-indulgent thing #2 of the day. I was scheduled to get a foot massage last night that was gifted to me from Miles's childcare director and co-worker (JR and NB). We were all going to go to the mall after childcare, and they would watch the boys while I got massaged. Eric has track and his adult running group on Tuesday nights, so this was perfect! But it started off the most stressful situation. I just knew that Dr W's office would call during pick-up, and pick-up can be a zoo. Pick-up goes something like this:
Ali wearing Felix in her Ergo Carrier or lugging the car seat/stroller into the ELC.
Miles (with a huge grin): "DA-DEE, DA-DEE!" And he runs to the door, without his jacket and lunch box, demanding we go outside to the track to see Daddy. Mom furiously tries to sign him out, direct him back to his cubby for him to pick up his jacket and lunch box, and make sure Felix isn't left in the mix. Well, yesterday we had to wait at the ELC because we were going straight to the mall with my "babysitters." I was hoping to nurse Felix while Miles stayed inside, quietly playing. HA! Miles was FURIOUS-how dare I curb him seeing Da-Dee. Oh, and then I look at my phone and see I missed a call and had a message from Emory. $hit! (there I go again). I listen to the message while trying to shepherd my son to the track for a few minutes as he demands to go up all of these concrete steps and put his hands all over the Marist mini-buses. Oh, and I am one handing Felix's stroller up a huge hill. This is not easy. Why didn't I Ergo him? "Hello Mrs. Heintz. Eric will be discussed at tumor board NEXT week." That was the message--what about the PET/CT scan?????
(Are you all still with me? There's more.)
Eric takes Miles, who is throwing a tantrum for God knows what reason, and I head back to the ELC. I get on the computer there and e-mail Dr Beitler, the rad/onc. I had his personal e-mail, and not Dr W's. So, I know he wasn't the one who necessarily had the results, but I banked on him coming through for us as he had in the past. I don't even know what I put in the message--it was panicked and desperate.
Then we were off to the mall! Wouldn't you know, JASON MRAZ's "I'm Yours" was playing on the radio when we walked into Dillards! Seriously, it's getting creepy, now--it's like our theme song. Not the one I would have chosen, though. The massage was wonderful. And Miles loved the mall. Uh-oh. Looks like we have a shopper on our hands. Felix behaved, and even took a little of a bottle. I had a great time talking with JR and NB. They just brighten my spirit. And Miles loves them so much. We had dinner, I got accosted by a kiosk make-up man who put his Latin Lover moves on me ("How old are you? NO! You cannot be more than 22. Are you an actor? You did NOT just have a baby. You are beautiful...give me your hand...call me when you are divorced."), and I drove home, listening to the same Portugeuse children's song over, and over, and over, and over...
On the way home, Eric calls me and tells me that the Dr who conducted the MRI study called. She just happens to be a Marist parent--and Eric had her son in track! She isn't on our dream team, but called with the CT/PET results--ALL CLEAR!!!!!!!!!!!!!!!!!!!!!!! (Ali, you mean you had to drag us through that entire day to get to that? Yes. It's a lonely path and I am bringing you all with me. At least you can skim read...I have to live it.) She said that the CT scan didn't even show the cancer in his tongue, but the PET scan did. And then I get home and Dr Beitler had e-mailed me the entire results. All localized disease...phew!!! All great news.
Let me make a note that PET/CT scans cannot detect cancer under 4mm, so the last big hurdle will be with the node/neck dissection during surgery. They'll comb through each cell looking for microscopic spread, which will determine radiation and any chemo prevention we may have to do. But overall, this is great news.
Another high five for cancer. (Actually, we do "low" fives in our house. Eric is allergic to high fives. I think they just make him feel awkward.)
Man, this giving cancer up for lent is really working!
Eric and I always say "I love you" at the end of every single phone call and e-mail. No joke. We have since the first one said it to the other. Even if we are arguing, we DO NOT hang up without saying "I love you." I think we have not said it about 3 times...and each of those times, we call back, still in a fit of rage for whatever reason, and say "I love you." Albeit angry, we still say it. If not, we feel jinxed. And for "code," we say "ditto." It means the same thing as I love you, but sometimes just a plain "ditto" carries more weight. And it is nice to mix things up.
I find the whole saying I love you thing strange. For some it is a really difficult thing to do, and others it rolls off the tongue. I always think, when it comes to family, why not say it? What is the worst that can happen? Will they laugh in your face? Not say it back? Will you get a case of vitiligo? I don't know...but any reasoning doesn't make sense to me. When my paternal grandparents started getting gravely ill a few years back, they started saying I love you on the phone at then end of each call. It was shocking. And you know what? It is my favorite part of our phone calls now.
We tell Miles and Felix we love them ALL OF THE TIME. I don't think they can hear it enough. I try to bathe them in our love--physical and emotional. Miles even "signs" it to us every night at bed time. (Okay, by sign, I mean I sign it to him, and then he gives us a fist of mangled fingers that means "I love you.") I don't ever want that to change. I love those boys so much.
I bring this up because at times like this, you tend to start saying things like "I love you" more frequently or explicitly to those you care about. What makes me feel comforted is that Eric and I haven't had to say it to each other more because we already say it to each other at every possible moment. Now, we just play around with adding goofy words (I love you "bigger") or making superlatives.
People have given me the argument that the more you say it, the more it is diluted. Fools! Don't they know that the more you say it the stronger it gets? I don't buy that argument (and anyway, I don't have the money to buy it). BUT, it is true that you'll get vitiligo if you say it and don't mean it. (Why am I pickingon vitiligo today?) Obligatory I Love Yous are like soft handshakes. Obviously insincere. And leave you feeling downright gross.
Please, don't ever look back on your life and wish you had said "I love you" more.
Monday, February 22, 2010
First, I know what you are thinking--there's $1 for the Heintz family fowe jar. (For new readers, it's our family's swear/college fund jar). Well, now that jar has turned into the Emory Winship Cancer parking fund...and "bastard" hasn't made it to the list yet, anyway. Please do yourself the favor, especially if you have any history in theater, to rent and watch Waiting For Guffman from which my altered post title is from. Christopher Guest movies just make me smile.
Perhaps exacerbated by Felix crying from 8pm until 1am last night resulting in his hernia growing in size to now look like a shiny honey glazed doughnut hole attached to his belly...and then Miles waking up for no reason at 1:30am and again at 4am due to a thunderstorm...oh, and Eric letting me know he is getting Miles's cold and has a sore throat (It's from the cold, right? Has the cancer spread? That's my life for at least 5 years)...but I had an angry, weepy day.
I didn't bite my pillow, but I screamed into it many times last night and again today. Rage, meet Ali...Ali, meet rage. And then in the midst of colic, Felix will present us with this you know what eating grin, and for a split second I can convince myself that this is all going to be okay. And then Eric, the one with little c, consoles me. Guilt, meet Ali...Ali, meet guilt.
We have a close friend, KF, whose husband has been battling cancer for over 100 days, and another friend, SD, whose beautiful son is currently waging his war against cancer as well. Both have already proven to be amazing emotional resources and can speak to the vast emotions one who is in the position of support feels during this time. I will not speak for Eric and his emotions on this blog (but invite him to post any time...can't promise it will happen), so I recognize that this blog primarily will be about my reactions and emotions. And yet, I still feel selfish in reacting in any way outside of strong and supportive. That is where relying on others in my position becomes pivotal. How do I articulate feeling thankful we are not alone when it is at the cost of others' suffering? That is what I am trying to reconcile. I hesitate saying, "I am so glad we are not alone." I mean, I am glad, but not glad others are enduring.
I also need to acknowledge the enormous outpouring of support we continue to get every day. I try to respond to 3 e-mails or messages every night while also spending as much quality time with my family as I can. A few weeks back I posted about our amazing family photography session with Danielle Bryson, and we were gearing up to figure out what pictures we wanted to purchase for our records. Our session expired online the day Eric was diagnosed with little c. I wrote a brief message to Danielle asking if we could extend the viewing because of Eric's situation. Of course she obliged. What made is laugh (because you HAVE to sometimes) is that our last session was Miles's 1 year, and he was so unhappy during the session. We found out after he was walking around on a broken leg the whole time! This time, Eric was smiling during all of the pictures while we had no idea little c was ravaging his tongue. Anyway, yesterday after my run someone knocked at the door. Danielle came by with a big box and card. She had printed out a ton of the pictures in all sorts of sizes as a gift to "give us a smile." I lost it. Cried like a colicky Felix. Of course we are still going order quite a few photos in time, but I am so excited to put some pictures up because they make my heart melt and give me strength. If you are in Atlanta and looking for a photographer, I IMPLORE you to use Danielle. She is not only a beautiful photographer, but beautiful spirit as well.
In a completely illegal move, I took a picture of the pictures she gave us because I just wanted to post the family one that truly represents us. It is far from "perfect" in the sense that none of us look "model-esque," but Eric and I think it totally reflects our quirky family. Please note Miles's adorable face and our one-eyed wonder, Felix. The 2nd picture makes me cry. I have no comment beyond that.
I realize my way with words and engaging blog has turned into a generally flat account of the facts and stats of our lives with little c, but please bear with me. I'll get my "mojo" back and I promise this will continue to be an engaging read.
To end, Here's a picture of Felonious Chunk and Miles in all of his snotty, sleepy glory. Part of me feels a little disconnected to chronicling their lives, especially Felix--damn cancer (see, there is that rage). I know my mother thirsts for pictures of her grandchildren, so these two are for you, Mom.
Sunday, February 21, 2010
Camel on the celing, C, C, C! We know that Dr Seuss book by heart--both the full version and the abbreviated diaper bag one. After this week, "little c" has a new meaning in our house. It's what we call Eric's cancer. Fitting given his nickname for some time was "little e." It's not that we are afraid of saying the word, although, it certainly doesn't roll off the tongue. Ouch. That pun wasn't intended...We just are calling it as we see it.
So, here's the update on little c. It is pretty little--about 2cm. It's still ugly, and I have the pictures to prove it (if you are adept at finding out my Picasa web albums, you'll run into it. BE WARNED.). Eric and I were commenting how it is a strange feeling to be able to actually see the cancer. Even with many other solid tumors, they are internal and you never really "see" them. Every couple of nights for the past month or so I have asked to see his tongue, but now that we know it is cancer, it just looks "different." There is still some patches of cancer left after the biopsy, but those will soon be gone because...
We are gearing up for surgery! Here is how Friday went down:
After the MRI on Thursday, Eric had a joint CT/PET scan Friday morning. The prep for the imaging studies was slightly longer than Thursday's and came with more surly technicians. I still cringe every time Eric has to tell someone "I had a biopsy, and then a few days later it came back positive for oral cancer." Shudder...
The tech put in a line in his arm and filled it with some sort of radioactive kryptonite (okay, not the actual medium, but I like to call it kryptonite) that required him to stay far away from me for an hour as it coursed through his veins. We were told that for the next 90 days we shouldn't consider expanding our family--that we would be playing with wounded soldiers due to radiation. Um...you think there is much more playing outside of peek-a-boo in our house? I just had a baby 7 weeks ago. According to my doctor, I still need a few more weeks of healing from Mr. McFeely's speedy delivery. (TMI? Folks who are new to the blog on account of peeping to hear about Eric--this journal is HONEST. Strap in and hold tight.) With Felix's colic (oh yes, he's got it...and he's got it bad. Three hours a night of fussing bad. Of course he does--none of the Heintz boys wants to feel left out of the struggle), Eric sleeps in another room. And then there is that whole cancer thing. Not sure anyone really feels compelled to start a family at the time of diagnosis. Maybe I am wrong. But I think the only addition to our family we would consider right now is a weekly maid, night wet nurse or aloe plant.
Back to the kryptonite. Eric had to sit still for 1 hour while I read and re-read magazines and tried not to make jokes or incite any movement of his face. We attempted sign language for a bit, but we were reduced to ASL of the baby variety. "More" "All Done" "Bath" and "Diaper" didn't get us very far.
After the hour, Eric went in to get the scans while I left to get him some lunch for afterward. As I walked out of the hospital, it hit me again: my husband has cancer. As I walked into Chipotle by Emory and our old stomping grounds during grad school, I remembered getting a discount for being a student. I wondered if any place gave cancer discounts. I think they should.
After Eric's scans, we went home to kiss Felix, visit Miles and then headed back to Emory for our appointment with the ENT surgeon ( Dr Wadsworth). Again we were met with a depressing waiting room outfitted with the poorest reading selection. Free Atlanta themed magazines from October 2008 just weren't keeping my attention. We finally got into a room and one of Dr Wadsworth's fellows came in with an Emory med student and went through the whole question game: "how did you discover this?" "what do you do?" "can I look at your tongue?" "can I feel your neck?"
And then she pulled out the Afrin on steroids.
There was a hidden tank she turned on, and the room errupted with some sort of loud motor reminding me of the archaic machinery we (unsafely) managed in middle school industrial arts class. She injected his nose with "super Afrin" to numb the entire passageway from nare to throat. Next she pulled out the Trinitron monitor and a device that had a long tube with camera attached.
"Do you want to come over and watch?"
Who, moi? YES!! I love this stuff. I'm telling you--I missed my calling.
So I got to watch as she went down Eric's nose and all the way to his vocal cords (which showed some wear and tear from teaching/coaching). Eric gagged a few times, but handled the intrusive procedure well--especially given we had no warning this was going to happen. The Dr said she didn't see anything too concerning upon initial inspection.
Dr W finally came in and sat down to give us the real 411 on the situation. He said he had the MRI results, but not the CT/PET scan. The MRI looked "beautiful." I have no idea what that means, exactly, but we'll take it? It's not like when the ultrasound tech tells you that your baby is exceptionally beautiful (because lets be honest, they tell all expecting parents that). There was some asymmetrical swelling on his neck nodes, but it could be due to the biopsy. We will have to wait for the PET/CT full results before we know what the true story is.
But, from the looks of it, the cancer is small, and the hope is limited node involvement. We were quoted that Eric is a "lucky man" in that it appears we caught this early. So early, that the 90% cure rate statistic was thrown at us! Not only that, he said he is pretty sure we are going "to kick this." I would prefer he told us we were going to take it, slash it in the face, throw acid in the bleeding facial wounds, and blend it to a pulp, burn the remnants, and then compost them (I'm trying to be a steward of the planet, people, ha ha), but I'll take "kick this," too. (Surgeons aren't known for their eloquency.) Head and neck cancers make up about 5% of all cancers, and Eric's case, which is exceedingly rare, is only a sliver of those. But, what that also means is that he doesn't fit the typical profile nor the typical prognosis (which for oral cancer is BAD). The hope is that we don't even need to utter the words chemotherapy. After all is said and done, Eric will need to follow up with the doctors every 6 weeks for quite some time, and then in a few years, he can go less and less frequently, but will need to be watched, well, forever. He'll also get yearly chest exams via x-ray or CT scan to make sure the cancer has not spread. He is now at an increased risk for additional cancers.
So here is where we are today:
Eric needs a 3 part surgery (to be scheduled to take place within 2-3 weeks):
1. Partial glossectomy. He'll have about 15% of his tongue removed. During surgery, they'll send the removed portion to the pathology lab to make sure they got clean margins (i.e. they took out all of the cancer and a good portion of healthy tissue surrounding).
2. Partial to full neck dissection. They'll remove some if not all of the nodes on the side of his neck through an incission from his ear to his clavical. Those will be sent to the path lab, but results won't be available for a few days.
3. Pan endoscopy. Dr W will pull a Dora the Explorer and look around Eric's mouth/neck anatomy to see if there is other cancer, which many times is the case.
Depending on the node situation (if there is malignancy), we'll have the radiation discussion. But we are not going to cross that bridge until we come to it. And we haven't come to it.
Surgery will be 4 hours and result in about 2 days in the hospital. Eric will be out of work for 2 weeks and we'll have to wait and see about the extent of speech therapy required. Within a few years, no one will be able to tell there was any surgery on his tongue and the neck scar will be barely visible. (But what guy DOESN'T want a neck scar?)
We high fived on the way home. It feels strange to high five over cancer. And Eric finally broke a smile in his "daily cancer mug shot."
|From Cancer Licks|
We were told that we need to make it to 5 years before we can start throwing around the word "cure." I'm not sure I'll have a restful night sleep for a good 5 years.
Thursday, February 18, 2010
MRI--CHECK! We don't have the results, yet, but I imagine we'll get more information tomorrow after his PET/CT scan and surgery appointment.
My father escorted Eric to his appointment today as I was getting a massage. I know what you are thinking--how dare you!?!?
I had scheduled a massage before the cancer hoopla and, well, think it was in Eric's best interest. I didn't start this fight in the best shape. Yeah, I started running again, but nursing all night and having a newborn and toddler in general has sapped my reserves. I try to remember this isn't about me, but I also recognize that I cannot take care of others if I don't take care of myself. My best friend CD and family got me the gift for my 30th birthday, and I had been drooling over the idea of someone working on my body for a long time--like years. It's amazing how quickly I went from drooling to feeling twinges of guilt today.
Here's how life changes when your husband is diagnosed with cancer. I go into the appointment and fill out a new client card. You are required to provide some brief health history. One of the questions is, "Please check if you have the following:" Wouldn't you know it? Cancer is on there.
Forever, Eric will have to check that damn cancer box. Enter: tears. Good thing it was the first appointment of the day, so no one else was in the waiting room.
I met my therapist and she asked what the special occassion was that brought me in. I told her I had a baby 6 weeks ago, turned 30...and my husband was diagnosed with cancer this week. Re-enter: tears. Why did I tell her? I don't know. I have moments of needing to say it because it still doesn't feel real. Interestingly, she said, "well, we must both be having a tough week. My partner is in the hospital with heart trouble and just got a by-pass. I came in today just for your appointment." And then she gave me a big hug (I think I inhaled and coughed on some of her dread locks, which she took as a sign I was crying harder, and squeezed 3 seconds too long). She was wonderful, and if I can, I want to get Eric in to have some healing hands work before surgery. There is something about the power of touch (or the smell of our baby...and even the crusty nose of our toddler). Little things.
I came home to dozens of messages, recommendations, well wishes, etc. I now have a folder in my gmail called "CANCER SUCKS" and am saving each and every message to print out and put in a file. It is overwhelming to receive such support--but it also slightly hurts each time because it becomes more and more real.
I have decided to use this blog as the main vehicle for updating everyone. It's just too hard, physically and emotionally, to re-tell the same story over and over. I will not promise it will just be about Eric, but also about our whole family's response and journey. Sometimes, I may just focus on the boys because they are a huge part of our healing--of giving us strength (at the same time making us pull our hair out).
Signing off for today. With Felix sleeping on my chest like a cherubic angel, and Miles carrying on a conversation with Nana on his cheese stick, life seems pretty simple and beautiful. Here's to keeping it that way. Little things.
Thank you everyone. Please stay tuned--
Wednesday, February 17, 2010
Due to some amazing people at my work (doesn't hurt to work in hem/onc), and friends--we found ourselves at one of the best centers for ENT oncology: Emory's Winship Cancer Institute. And we ended up there less than 24 hours after the diagnosis was read. (Let me take a moment to recount one of the strange experiences through all of this. After Eric was read the horrible news, Jason Mraz came on the radio singing the adult version of the song we listen with Miles multiple times a day--I'm Yours--or in our household, Sesame Street's version Outdoors. Strange, but a sign to me that things would be okay. Ah, Jason Mraz has no idea his influence on our life.)
Let me just say that I spent the 1/2 of the day working with such amazing people...and the best was when the radiation oncologist who was copied on an e-mail from the hematologist/oncologist the president of my company contacted (he is on our faculty), sent a message from his blackberry--"can we get this patient in today?" No less than an hour later, the department was calling me and we were at Emory at 2pm.
I cannot describe what it felt like to walk into a cancer center. By far we were the youngest people there, and perhaps the cheeriest. I wish I could say it was like our experience at Children's recently when Felix had jaundice. (Eric said he prefered to go to that hospital. I told him it didn't work that way. He looks young, but not THAT young.)There was no interactive center to play on,or brightly colored modern decor. The waiting room was kind of sad and scary. Luckily, every single employee was just delightful. I think you have to be to work in hem/onc.
So, we met with an incredibly aggressive radiation oncologist, Dr Beitler, who essentially put all of the wheels in motion. The next thing we know, we are seeing the hematologist/oncologist (amazing Dr Khuri), and scheduled for an MRI, PET/CT scan and an appointment with one of the best microvascular surgeons (Dr Wadsworth). All this week--and it is already Wednesday. We have personal e-mails and cell phones of everyone from the Doctors to all of the nurses and nurse practitioners.
What truly marked the experience as comforting was that every single person asked us questions like, "How long have you been married?" "Do you have any children?" "What do you do for livings?" I was like...wait, you mean we are people and not just diagnoses? Seriouly, stuff like that makes a difference. Even more so than sugar free lollipops at the front counter. Wait...those always stunk.
In terms of "answers," no one can figure out why this has happened. He is young, healthy, no problems...never smoked, chewed, doesn't really drink...
But, that's for another day. "Why" isn't our priority--it is "What" and "What to do now?" Thanks to all of the Drs (specifically Dr Beitler)we have a plan and we are on the hunt to clear this wretched disease.
First: MRI tomorrow morning
Second: CT/PET scan Friday morning
Third: Meeting with the surgeon Friday afternoon
Fourth: Eric will be discussed at the tumor board 6:30am on Tuesday
Depending on what the scanning/imaging uncovers, we may just stick with the surgery route. No matter what, he will be having a partial glossectomy and will require some significant speech therapy. We DON'T think he'll have a hemiglossectomy (1/2 of the tongue), but there will be a large portion removed. He will also have his lymph nodes in his neck explored. The hope is to retain as much functioning tongue as they can, while getting all of the cancer along with clean margins, and to see if there is any lymph node involvement. I have no idea when surgery will take place, but soon. Recovery? No idea...any partial glossectomy survivors out there? Yeah, I didn't think so.
Just going on physical exam, it appears the cancer is about 2cm, superficial and there are no swollen lymph nodes noticeable (the place of spread). The scanning/imaging will tell us more about spread, if any.
Best case scenario, we physically remove the cancer and just continue to follow-up (and will consider some chemo prevention clinical trials).
I won't go into worst case scenario, because why go there?
I already promised Eric I would shave my head if needed, but then he said, "listen, I need a hot wife. And besides, then the focus would be on you."
Touche. As lovely Ginna pointed out, 2010 is the year of Eric. I think that follows the Chinese calendar, no???
My mind is racing, my thoughts scattered. We still have so much to go, and we have received the most amazing outpouring of support and help. Eric's work has been nothing short of miracle makers(Jenni, Laura, JoAnn, Susan), and my work the same (Tina and Jen). Friends (especially Carol and MB), both new and old...co-workers, even total strangers have decided to go on this journey with us.
I still pause and have my heart drop every time Eric picks up the phone to tell a friend or loved one, "well, I have oral cancer." I just cannot believe it most of the time. I never imagined us here; especially after all my drama with the pregnancy and Felix just a few short weeks ago.
Now, it is me watching Eric get blood drawn, and get examined (except he doesn't have to put his feet in stirrups multiple times a week!). I'm trying so hard to be present 100% for Eric, but also for Felonious and Mil-oh-sovich.
I'm not going to lie. This sucks. Cancer bites (I was going to say licks...but that's a little "too soon," no?). But the idea of community has never been so beautifully exemplified.
By the way, do they have make a wish for adults? If so, Eric already told me he wants to see the Northern Lights in Canada. Oh, and be able to eat ice cream some day again.
Here's to a big creamy sundae under the beaming Northern Lights someday soon...with the 3 loves of my life.
We got the devastating news and are on ATTACK mode. I am so thankful my parents are here this week to help, but there is no question we are in over our heads and need all the support people can be willing to muster. I have no idea where this blog will go, but I imagine we'll use it to keep everyone up to date on our progress.
Eric is doing remarkably well, considering, but we already have moments of sheer desperation. Insurance, testing, chemo, surgery...such scary things.
And then there are the boys. I am glad they are not old enough to understand, but Miles already could sense things were amiss and had a rough night last night.
Join us in fighting this awful disease. It's gonna be a wild ride.
I think Eric put it best: "I just realized I am always going to be labeled. Cancer Survivor."
You better believe it...
Sunday, February 14, 2010
It's been quite an eventful Valentine's Day weekend, and I don't have any clever literary quips or tricks to begin today's post, so it is totally a buffet--random selection of mediocre dishes. In fact, I am almost 100% positive I used this same Simpson quote for one of my past V-day posts. Too lazy to go back and check.
Still no word on Eric's results. Follow-up appointment is Tuesday. Continued thanks for the well wishes...
We spent the first part of the weekend dealing with SNOW. And it really was snow--not just the threat, but snow that stuck on the ground! Eric took some great shots of the trees,
|From Snow and V-Day|
|From Snow and V-Day|
|From Snow and V-Day|
|From Snow and V-Day|
After the snow got boring, we headed over to Marist to swim in the pool. It's hard being a toddler trapped in the same house all day, so we packed up and headed over to the heated pool. It was a really fun day! Felix was along for the ride, and his adaptability continues to impress me. Such a chill baby (minus any time his intestinal track is asked to do work).
Reason #111 why children can be SO different. First, Felix is just getting chunkier and chunkier. Part of me is stunned just because Miles never really "filled out," but also because Eric and I don't scream "chunkeroony!" But it is fun--save the smelly rolls. Oh yes, I just went there. Babies are cute, but when they get rolls...they trap things like breast milk and Prevacid pellets. YUCK! Eric keeps reminding me that his chunk is 100% supported by my nursing. That whole concepts still floors me--can I really be responsible for nourishing this child...and creating such delicious rolls? But then I think of how constant his nursing is, and my surprise dissipates.
|From Snow and V-Day|
|From Snow and V-Day|
Reason #112: Felix went 3 DAYS without pooping. Okay, Miles still doesn't go 3 HOURS without pooping, so this was a shock. I know it is common in breast fed babies, but I was so worried the resultant pooplosion when he did go would spray in my face. Alas, it didn't. But this kid just isn't a big pooper.
Reason #113: He may not poop a lot, but let's recall the Heintz house of toots and poop--THIS KID'S TOOTS ARE TOXIC. Breast milk poop still doesn't smell bad, but I have no idea what kind of chemistry experiment he is conducting in his colon, but it has to include sulfur or some sort of Satan gas...Felix can clear a room. This does not bode well for attracting a girlfriend (or boyfriend...I'm flexible!).
Speaking of girlfriends, here is a non-sequitor picture of his g-friend, Frida, in action. I thought you all would enjoy.
|From Snow and V-Day|
|From Snow and V-Day|
I am telling you, Frida is amazing. And I am getting a great lung workout every day, which is important since I AM RUNNING AGAIN!
|From Snow and V-Day|
|From Snow and V-Day|
And for kicks, we spent the day today singing songs, watching the fire in our fireplace (which ultimately made our fire alarm go off at the EXACT moment Miles prematurely woke up from his nap after an hour, Felix needed (wanted) to nurse, and Eric was in the shower in the middle of shaving. Chaos ensued), and chillin' in our PJs. And we have to thank Mama Schlotty for the boys' PJs. She made the most adorable pants for the boys from organic fabric I had sent to her (I won it in a contest, and we all know I cannot sew a thing, so I gifted it on to her).
|From Snow and V-Day|
|From Snow and V-Day|
|From Snow and V-Day|
Here is Miles clapping for Jason Mraz (again, soon to be the star of another post--but I am Mrazzed out today and do not feel like going there...and if I attach the video, I'll hear nothing but "ONG! ONG! ONG!" from Miles all night).
|From Snow and V-Day|
|From Snow and V-Day|
Tonight will be capped off with an early bedtime, Olympics and Cheesecake factory take out...and perhaps a 3rd doughnut. Good thing I am running again tomorrow.
(Full album of all of our weekend craziness here)
Wednesday, February 10, 2010
He cannot talk, and has been laid up all day. The hydrocodone is making him itchy and loopy. Now we just wait. Thank you for all of the kind e-mails, prayers, positive vibes and suggestions. Your checks are in the mail. :)
There is nothing like waiting with Felonious Chunk on your chest:
|From Felix week 5|
|From Felix week 5|
|From Felix week 5|
Full album here. I need to take more pictures...2nd child syndrome.
Tuesday, February 9, 2010
Verdict? Who knows. He has zero risk factors for oral cancer, but we have no idea what else it could be. They couldn't remove it b/c it was too large (that's never good), so they took a biopsy (Eric was understandably scared of the procedure given that some people go under GENERAL to get this one done), and we wait a week. There was talk of additional procedures depending on the results--ugh. And of course I have succumb to Google and feel even worse after my Internet searching.
I realize we used all of our life lines during both of my pregnancies (was there a prayer chain we WEREN'T on?) and I hate being the dark cloud family, but I feel incredibly scared and helpless right now. I'm really in no position to be an adequate emotional support at the moment. I am not good with waiting (I used to secretly open my x-mas presents when I was a child), and my response is feeling pukey and not being able to eat. Great, there goes my milk supply.
So, here I go asking for prayers and support. I hate that it is when you are in crisis that you turn so explicitly to powers beyond us. God, Allah, Yahweh...the universe...whatever you believe in or whatever forces you trust in that may dictate some sort of direction in our lives--do you all mind making a call? I'll pay for any long distance charges. Promise.
When it rains it pours. Lord, I really hate the rain.
Monday, February 8, 2010
'Tis the season for love and snot. With Valentine's Day approaching, I felt it important to share with you my Felix's first love: the Nosefrida Nasal Aspirator: aka "the snot sucker." I had read about it from a number of (un)reliable online sources in the form of mom blogs, but never had the courage to get one until I got a generous Amazon gift card from my friend Schlotty. (And you all know that Amazon is my first love. Okay, online love.). I took the plunge...or the suck.
Hands down, this is one of the best baby-related purchases I have ever made. Although, Eric would beg to differ and cannot look me in the eye after I've used it. I think he feels it is some sort of nasal violation; and he is convinced that the snot goes into the mouth despite numerous tutorials. And this, coming from the man who I got addicted to nasal irrigation recently. Sheesh!
Miles has chronic day care nose, and you combine that with his love for "kissing" Felix (okay, body slamming him) I just new it was a matter of time before Felix got sick. Again, how different it is with #2. Miles wasn't sick for months (it didn't hurt that his childcare had all of 3 other boys at the time), but Felix has gotten the sniffles at a mere 1 month. And here's the kicker--
Reflux + congestion +breast feeding = Hades, people.
You ever tried to nurse an obligate nose breather who cannot actually breathe through his nose? Yeah, it's awful.
"But Ali, what about those blue nasal bulbs they use and give you at the hospital?"
Folks, they don't tell you that those are actually toddler bath toys and NOT successful infant tools. Okay, I take that back, they work great for sucking mucus and things like amniotic fluid out of an infant's throat, but I have yet to find someone who says, "wow, those bulb syringes are God's little miracle for nasal clearing."
(It's the blue tube, not the unusually happy product placement toddler.)
Here's the gist: you stick this hollow tube at the end of the nare (not IN the nostril), and a long tube as attached that connects to a mouth piece. The mouth piece has a filter in it (read: SNOT DOES NOT ENTER YOUR MOUTH) and a red little mouth piece. Directions? You suck as hard as you can and you will harvest the most amazing treasures for your infant/baby's nasal passages. It kind of sounds like the suction device they use at the dentist. And to help it along, I move the nasal applicator part in gentle circles. It clears out the nose so cleanly and perfectly, I wonder at times if I missed out on some good nasal cleansing with Miles.
The first time I used it, I tried it on Felix prior to thinking he had any nasal congestion. Let me tell you, he had some impacted snot that only Frida could identify. The whole "event" reminds me of a using a peak flow meter because sometimes I feel like I am testing my lung capacity at the same time. And when I say that you can suck hard, I mean you can go almost faint with this thing. Felix's response? Usually a wide eyed glare and a smirk. I think it is as satisfying for him as it is for me. Now, I haven't used it on Miles, but am not sure I'll get such a welcome response. I have yet to determine if it is a sign of some inherent pathology on my part how down right satisfying it is to use the Frida on my son. As I watch the collection tube fill with all sorts of junk, I just feel a sense of accomplishment. Maybe it is because I was one of those kids who picked her scabs or currently pops ever running blister on her feet. I'm one of "those" types...
Frida is so beloved that she has been elected to one of the prime ministers of my bed side "elected officials." It's the area where I put all of the important items for Felix's care during the night (Prevacid, tissues, snappis for the cloth diapers, trail mix for midnight snacking, ice water...and now Frida).
And for all you preggo friends (and there are a lot of you out there now!), you better believe you know what part of your new baby gift is going to be...
Friday, February 5, 2010
|From Felix 1 month|
(on our way to our 1 month appt! Notice Mommy's attempt at using a Nuk to soothe the baby as she cannot reach her breast to the back seat while driving. Note to self--the pacifier does not work more than 1 minute...you know it is bad when Mommy starts pushing a Nuk)
I am a a day late in "celebrating" Felix's first monthaversy, and I think that is how 2nd children work--frequently a day late and a dollar short. The amount of energy and attention you can devote solely to #1 is epic, and then with #2, you realize it is slightly diluted. Luckily, you don't have time to feel too guilty. And then I realized that although I am not able to dedicate 100% of my time solely to Felix, in those moments that I spend with Miles AND Felix (attached to me in some way), probably feels to him as though it is an "all Felix all the time" party. I think that is one of the numerous advantages of baby wearing and attachment parenting (yes, there is that pesky label). Felix is already part of our day to day routine--he is saturated in Miles's toddler world of songs, games, and predictable schedule. He is never alone; never in a crib by himself in another room, but always part of the action--even if it is on a blanket on the floor while I cook, or nursing while I am bathing Miles. It's a parenting philosophy that I know doesn't jive with everyone, but it is working wonders for this household. Now, I am NOT one for scheduling a baby (I am allergic to all copies of the BabyWise book), but I do think that we are setting the stage for a more orderly and routine oriented house--without rigid schedules that so many "baby experts" espouse. (I was surprised recently to see that even the more conservative AAP has come out against baby scheduling too early.)
You may be wondering how we celebrated his montherversary--let me tell you. We went to the doctor and found out that, yes, children can be SO different from one another. I may have the dominant gene for all my children to be "high needs" babies, but what I didn't realize is that I also had the butterball gene (or maybe it's from Eric's side?). We went from 5lbs 12 oz and 19 inches long at his 1 week visit to:
NINE POUNDS and TWENTY-ONE AND A HALF INCHES. 35th percentile in weight (up from 7th) to 48th percentile in length. But then, here is the kicker, his head circumference was 9th percentile. Holy Beetle Juice headshrinker! Miles was the exact opposite. Not sure we were even on the weight scale at 1 month, and he was always so little...but his head? 80-90th percentile (still is). I would love to take a dive in my and Eric's gene pool--there is some crazy stuff going on!
We also confirmed that Felix's ears are normal. I didn't mention it previously, but at his 1 week visit, the Dr made a comment that his ears were really low set (and they also have a little Klingon in them or something that causes they top to have a squished wrinkle.) I was ordered not to Google "low set ears" and essentially pinky swore my Dr and husband in the exam room. Believe it or not, I didn't Google search (or go to the basement of the Chamblee Library and pour over old microfiche). But boy did my imagination go wild...luckly at 1 month, although still crazy at the top, they are totally fine (I get a kooky foot with Miles, and kooky ears with Felix--let's hope there is no ear physical therapy in our future!)
We also have a lovely herniated belly button. It's worse to look at than it feels for Felix. It is probably due to all of his grunting and straining and should disappear by 1-2 years. Again, I birthed a pregnant woman.
But...my child has apparently hit the tanning beds a little too hard (I knew I shouldn't have watched that snipit of Jersey Shore). And we were back at Children's Hospital this morning for more jaundice testing--at $200 a pop, this testing is draining us fast. (Let's not mention the various hospital stay bills, medication co-pays, and even the darn parking at the pediatrician's office. I love having health insurance, but navigating the system is a nightmare!)
Verdict? Breast milk jaundice and we will revisit at his 2 month appointment.
We also switched things up and are off the Zantac and starting Prevacid. Ummm...can someone please tell me how to administer a solutab to an infant? The damn things don't dissolve, and syringing 5 ccs into my child's mouth is a nightmare. I hate medication, and am shocked that I have even allowed us to give as much as we have to Felix, but he is suffering.
We flitted around Atlanta and after getting his prescription filled, ended up at the OB to pay, you guessed it, a bill. On the way out, two ladies, one of whom was pregnant, were talking at that volume that they think is private, but you can certainly hear and commented on my tan little headshrinker.
Preggo's friend: "Aw, look at that baby!!"
Preggo: "He's so funny looking!"
I almost drop kicked the 30+ weeker to the ground, but gave her a free pass for being pregnant and having poor judgment. Eric and my babies may look like old men, or have excessively disproportionate heads...or even Klingon ears, but do not call them funny looking. Luckily, this is Felix's response:
|From Felix 1 month|
Monday, February 1, 2010
|From Felix week 4|
DUE DATE DAY!!
Today was supposed to be the day that Felix came into the world. Part of me cannot imagine waiting this long to meet him, but another part of me dreams of the extra sleep I may have gotten over the last 4 weeks. Oh, and then there is that part of me (a very specific part of me if you know what I mean) that is extremely happy I delivered a 5lb and not a 9lb baby. We go for our 1 month appointment on Thursday, and I have a sneaky feeling this child will be in the 90th percentile for weight. If they told me he tipped the scales at 20lbs, I wouldn't bat an eye. Reflux has this crazy way of making some babies want to eat.all.of.the.time. Like last night when I was up from 11pm until 5am. And then Miles felt left out and started crying at 5:30am and Felix realized he wasn't on the boob and desperately sniffed his way back. (In my ever attempt to stave off insanity and delirium, please let me acknowledge that I am blessed to have a voracious nurser. I know that the opposite can truly be just as exhausting and overwhelming.)
I was looking at Felix in the glow of the local weatherman Chesley McNeil giving the forecast, about ready to cry because, well, I don't know. Perhaps because Miles was crying...or perhaps because it was going to rain...or perhaps because there is something poignant about Felix's real due date...or perhaps because I spent hours watching him deal with gas and reflux...or perhaps I hadn't been lying vertical for more than 24 hours.
And then...I finally came to an Oprah "aha" moment.
--tempts the hands of everyone to touch him without asking permission (of course more than just his belly).
I really think I am on to something.
In regards to the last bullet, let me take this station break to say WASH YOUR HANDS if you are going to pick up a newborn. I am amazed at how many people, and I am not just talking about the 2 year olds at Miles's childcare, think it is okay to touch a newborn without washing their hands. Okay, public service announcement is done.
|From Felix week 4|
I try to remember to breathe each day and soak up what little time I have with my babies. Already we have so few pictures of Felix, and I am going to try to get myself motivated to take more video and pictures. My friend JW sent me this quote the other day, and I keep saying it over and over: "Quiet down cobwebs, Dust go to sleep, I'm rocking my baby, And babies don't keep." Sometimes you need to dig deep to find a mantra to keep you going, but sometimes, you just want to throw up your hands and say, "I suck at being a Mother."
And then your husband comes home and tells you how much he loves you and how you are super mom, or Miles falls into a hug on you and screams MOMMY or DA-DEE, or he kisses Felix, or "asks" you to kiss his stuffed Monkey doll at bedtime, or Felix smiles and chuckles in his sleep...
...and all is right in the world.