Wednesday, June 10, 2009
Two Big Ones
I have three weeks of freedom. Post-chemo, pre-surgery. I want to spend every minute I can with all three of my boys. I keep my appointments down to the necessities. No acupuncture, no lymphedema treatments, just surgeons and pedicures. Miles and I live at the park. The second we come home I spend time with Baron and I switch off between the 2 until they go to bed. Then Boris gets home and we spend our evenings together. We celebrate our 3rd wedding anniversary and try to joke about what an eventful 3 years it's been. 3 years, 2 babies and cancer. Boris tells me that even though this year has been unbelievably challenging, he's so happy to be sharing his life with me and will be by my side when times are better, too.
I have my last 2 appointments with Dr. Phillips and Dr. Slate. Dr. Phillips explains the surgery again and answers my remaining few questions. He tells me that he needs to push my surgery date back by 3 days because he needs to perform surgery on someone with esophageal cancer. No problem. What's 3 days? Before I leave, his patient coordinator comes in to meet me and go over the administrative aspects of the procedure. While she's talking she casually mentions that "since Dr. Phillips isn't a provider," and I have no idea what she says next because I'm in shock over the beginning of her sentence. "What are you talking about?" I ask. "Didn't you know that he's not a provider? Kristi Funk usually tells people when she refers him," she says. No I didn't know and am in a bit of shock. "I need to know what the costs are that I'll be responsible for," I tell her. I also tell her that I'm still waiting for information regarding the blood bank and the tests I need to have to be able to use Seth's blood should I need it. She assures me she'll get me the information immediately. I'm panicked. Dr. Slate is going to cost me a fortune (I'd say an arm and a leg, but really it's 2 boobs) and I can't imagine that Dr. Phillips is a bargain. But what am I going to do? Switch surgeons? Again? I like Dr. Phillips the best and think he's the best surgeon so I'm kindof stuck regardless of what the cost is. But still.
I don't hear back from the patient coordinator. The following day I call her again. She tells me that she's left messages for Valerie who has the information regarding the cost of the surgery. She offers me Valerie's email and I take it. But the next morning when I still haven't heard from anyone I realize that I am fucking livid and that it is not my responsibility to track down basic information that I should have been given months ago. So I send an email to the patient coordinator and Valerie and "bcc" Dr. Phillips. The tone of the email is, let's say, harsh. To summarize I tell her that I am livid, that it's unacceptable to have learned that Dr. Phillips isn't a provider 3 weeks prior to surgery, that it is her and her responsibility alone to have provided me with that information (not another doctor's), that it is unacceptable that I still don't have that information and that while double mastectomies and blood transfusions may be no big deal to her and her office, it is to me, that I have 2 children under 2 and can't simply race off to Cedars whenever she feels like sending me information regarding the blood bank and that while I am confident that Dr. Phillips is the best surgeon, I am seriously concerned about his staff and moving forward. And guess what? I have all the information I need within the hour. Sort of. Valerie tells me that Blue Shield is a bit different (which is weird since they are just as fucked up as any other insurance company) and that since Dr. Phillips isn't covered, neither is the hospital. I assure her that that cannot be correct and suggest that she speak to a supervisor at Blue Shield. "If that's the case I can't use Dr. Phillips. The hospital is the expensive part. But a hospital that is covered doesn't become un-covered because a doctor providing care there isn't a provider," I tell her. She calls back to tell me I'm correct. Amazing.
Now that the drama of surgery has been settled, I move on to the next drama. I wake up in the morning with what looks like a bug bite on my left breast. Since I recently saw a video on inflammatory breast cancer during which multiple women thought they had bug bites on their breasts only to find out it was inflammatory breast cancer and died shortly thereafter, I call Dr. McAndrew panicked. I leave her a message informing her that I might have inflammatory breast cancer and have to see her right away. Her nurse returns my call and informs me that I do not have inflammatory breast cancer, but that I should come in that afternoon just to alleviate my concerns. Thankfully, she was correct but I had to wait over an hour for Dr. McAndrew to see me for 2 minutes to get confirmation. But that's my new life. Life post-cancer. Any bug bite, headache, joint pain, breathing problem is now in my head some form of cancer that might kill me. I also tell Dr. McAndrew that I've been having horrible neuropathy in my right hand. It's completely numb almost every morning for close to 30 minutes at a time. I didn't have any problems with my hands during chemo and am nervous something is wrong (but of course). Plus, I'm still swollen and thought I wouldn't be by now. She sadly tells me that side effects from chemo can last for months and that often, new side effects occur after chemo is finished (for example half of my left eyebrow fell out after I finished treatment). Rude.
I rush home just in time to give Baron his bath and Miles his dinner. Baron and I are in love which I think is a miracle given how little I feel like I see him. He gazes at me with the most beautiful stare and laughs like I'm the funniest person on earth. He has the most magnificent smile that says "oh my god! It's you! I'm so happy to see you!" every time I see him even if I've only been away for 45 seconds. I get to spend a few minutes rocking him to sleep before it's time for me to put Miles to bed. I wonder when I'll ever be able to put both of them to bed and not give Baron to someone else.
In the past month, Miles has become obsessed with my boobs. Obsessed. They're now part of his bedtime routine. The irony. Each night after he has his milk and we read a zillion books I tell Miles that it's time for us to snuggle and then he'll go into his bed. He sits on my lap facing me and lays his head on my shoulder. He used to stay that way until he was ready for his bed. But not so much anymore. Now he sits up and says "find mommy's boobies. Open it (pointing to my shirt)." I lift my shirt and Miles yells "I found them!" But tonight as I lift up my shirt Miles says "two big ones!" I can't stop laughing it's so funny. He laughs too. I say "yes, mommy has two big boobies." "Miles has big boobies?" he asks while looking at his chest. "No monkey," I tell him. "Just mommy."
The next morning me and my 2 big ones go to see Dr. Slate for the last time before my surgery. I decide I'll go to the blood bank for my requisite blood typing/screening afterwards. Dr. Slate is 45 minutes late and I'm pissed. I could have had my blood drawn instead of idly waiting. Not to mention I'm missing time with the boys which makes me die. When I finally see him he asks if I'm okay and I tell him I'm really angry that I've been waiting so long and that I wish someone would have told me so that I could have made better use of my time. Dr. Slate is so apologetic and tells me he'll make sure I don't have to wait to get my blood drawn. He answers my last few questions about the procedure like when can I exercise and drive and remind him, again, that I want small boobs. When we're done talking, he escorts me to the blood bank as promised. "Are you okay if I tell a white lie to speed things up?" he asks. To get me what I want? Absolutely.
We enter the blood bank and there are at least 10 people sitting in the waiting room. Dr. Slate breezes into the back room and starts talking to one of the technicians. "I have to get her back to chemo immediately," he says. Thank goodness for my scarf! Although the clerk at the front desk is reluctant to let me jump to the front of the line, the technician tells me to come on in and leads me to a chair. Dr. Slate comes with me. I start my yoga breathing as the technician wraps the tourniquet around my arm. It always makes we want to throw up. But before I know it I'm done. As we're walking through the waiting room, Dr. Slate loudly says "okay, we'll come back," just to not piss anyone waiting off. He tells me that as his patient, his responsibility is to take care of me no matter what the issue is. I heart him.
And then I have my last appointment before surgery: lab work and an EKG at Tower. I want to cry when the nurse tells me she'll have to draw blood from my vein instead of my port. Why have a port? Plus, I just had blood drawn from my vein yesterday and wish I had known what they needed. I could have handled everything at the same time. I almost pass out. Again. I am the worst patient ever. The irony. The EKG thankfully is fast. Not because it hurts, but because the nurse is so dumb I think I'll die if I have to be near her any longer. At one point she asks me if I have kids. Really? I was only in here giantly pregnant and was the only person who was in here giantly pregnant, but whatever. She laughs and says "oh right. There are just so many patients here, you know?" I'm silent. Then when she opens my gown to attach the EKG nodes to my chest she says "oh now I can see that you have kids. But it's not too bad." OMG. Who says that? Especially because I am half her size 3.5 months after giving birth. But again...whatever. The EKG makes me think about Mattie since she's supposed to have one every 6 months and hasn't had one all year. And then I think about Norman and how much I miss him and how awful the end of his life was.
I decide that it's finally time to start talking to Miles about my surgery so that he'll know what to expect and in light of his recent obsession with my boobs, he needs to know that they're going to look different soon. I never had to talk to him about being sick because other than losing my hair, he didn't know I was. I never acted sick around him or let chemo interfere with my activities with him. And so while he and I are snuggling in his chair before bed and while he's asking to "see mommy's boobies," I tell him that mommy has a problem in her boobies called cancer and the doctors are going to take mommy's boobies away to make mommy better. "Mommy will have new boobies," I say. "Mommy will go to the hospital for 2 or 3 night night sleeps and when I come home I will have an ouchie where my boobies are. We will have to be gentle with mommy's body. But then the ouchie will go away." Miles is quiet for several minutes. Then he starts stroking my belly. "Take mommy's belly away?" he asks. "That would be nice, but no. Just mommy's boobies." He's quiet for a few more minutes, then smiles and shouts "new boobies!!" He kisses me on the lips and lays his head on my chest and just lies there for a long time. Then he jumps off my lap and runs over to his book case. "Another book," he says. "Read more books." I tell him he can pick out 1 book for us to read before bed. "2 books," he says. "1," I respond. "2 books. 2," he says. "1 book, monkey." And Miles picks out Shel Silverstein's "A Light in the Attic" and brings it to me. I think he's a genius. Or maybe I just think he's like me. If he can only have 1 book it's going to be the thickest, longest, biggest book he owns.
In the morning when he wakes up, Boris brings him into our bed where I'm snuggling with Baron. Miles turns to Boris and says "mommy in hospital. New boobies." Boris looks at me. "That's what Miles took away from our cancer conversation last night," I tell him. Leave it to my genius son to sum it all up in 5 words.