To get the mood set, let's start with the little c update--and it has no pictures and is LONG. Like, waste your lunch break reading it kinda long. Oh, and rated "R" for language. I'll be checking IDs. Grab some tea. Preferably green tea. I hear it does wonders for cancer:
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.