Friday, September 25, 2009

5 1/2 Weeks

I remember that I'm not allowed to eat this morning. I have my planning session at The Center for Radiation Therapy and this time it's for real. I change into a gown and wait. Less then 5 minutes later, Jose, my favorite blood technician from Tower (no, I cannot believe that I've had enough blood draws to have a favorite technician) comes to the The Center to set up my i.v. I had told Marilyn that I am a terrible patient, hate needles and still get nauseous after 1 year of weekly blood tests. That's the 1 negative of post-cancer life without a port. Even though my left arm is usually off limits for blood draws, Jose skillfully inserts the needle into my left arm. Dr. Botnick needs to locate the lymph nodes in my chest area so that he can include them in the field of radiation. We love Jose and the i.v. is quick and relatively painless. I'm led into a large room with a massive machine. A technician whose name I can't remember introduces himself and asks me to join him at the computer in the corner. He pulls up consent forms that I'm to sign. They go through the myriad of side effects that radiation may cause. Exhaustion, nausea, localized pain, lymphedema, and many others that I try to block out. Everyone swears I need this and it outweighs all the bad shit that it could cause (including other cancers down the road).

I lie down in the machine and the technician explains what he's about to do. He's going to flush my i.v. with a radioactive material that will highlight my lymph nodes. He lifts my arm up and guides my hand to hold onto a small bar above my head. It seems to be taking forever. My fingers start to tingle and I know that soon my whole hand and arm will be numb. The technician starts fiddling with the needle and taping layers of tape over it. I don't know what on earth he could be doing but it's ridiculously painful. He tells me that due to the position of my arm, the catheter is pinched and the contrast dye can't get through. He calls in Dr. Botnick's nurse (who we love by the way). She keeps repeating that it's a great i.v. but for the position of my arm. But since it's not working in the needed position I don't think it's so great. There's more pushing and shoving and taping and untaping. Ouch and ouch and ouch! The problem is finally resolved when Marilyn pushes the needle deeper into my arm and tapes it down with yet more tape. I'm bruised for a week. Plus, now that I'm no longer the hairless wonder, getting the tape off my arm is gnarly. But finally the planning begins.

Dr. Botnick enters the room and places some sort of tape around my breast (he explained the purpose but I can't remember it now although I think it was to make a mold that I'll lie in each visit) and I take the opportunity to ask him about ultrasounds and their effectiveness in detecting breast cancer. A week ago, a friend of mine told me that her obgyn does an ultrasound of her breasts at each visit. At her last visit, her doctor detected a very small lump and insisted that she see a breast specialist immediately. My friend started asking me questions assuming that Dr. Funk did an ultra sound of my breasts at my bi-yearly visits. Suddenly I'm livid. I saw Dr. Funk for years before I found my own tumor. She only performed a manual exam even though there was an ultrasound machine in the examination room. I promptly emailed Dr. Funk writing "I'm assuming you have a good reason for not doing ultrasounds of your high risk patients. I'd like to know what it is." I still haven't received a response. But I have been asking doctors about the standard of care regarding ultrasounds. Dr. Botnick explains that it is not the standard of care here. It is in other countries, but not here. There's still some debate about its effectiveness in detection. But he says that I should have had an MRI. Now that I've been asking around, I've learned that many doctors are able to get their high risk patients' insurance companies to pay for MRIs. "You absolutely should have had one," Dr. Botnick says. There's no point in pointing fingers now, but I just don't understand why with my family history, Dr. Funk only performed manual examinations on me.

After the endless taping, the machine I'm lying in starts slowly moving around my body. My arm feels like it's about to fall off. After several more minutes, the technician tells me that he needs to mark me and then I'm done. The "marking" is a tattoo, 3 actually, that the technicians will use to ensure I'm properly placed in the machine during my radiation sessions. He takes out a small pen and draws 3 dots on my chest. 1 on each side of my left breast and 1 on the top. I feel 3 small pricks, 1 over each dot, and then I'm free to go home.

As I'm lying in bed that night, I tell Boris about my day. I'm playing with my hair as I'm talking. It's coming in thick and as far as I can tell, straight. Maybe there's a god after all? Boris tells me how great he thinks I look with short hair. "You're hair was beautiful before and I loved it, but you look so cute with short hair," he says. "Maybe you should keep it." It's so nice of him but there's no fucking way I'm keeping my hair this short. He smiles when I tell him about my tattoos and asks to see them. I can't even find 2 of them they're so tiny. "Cancer's given me a whole new wife," he jokes. "New hair, big fake boobs, tatts. Awesome." Hilarious.

I'm really scared for my first round of radiation. I don't know what it's going to do to my skin. I'm fair skinned and avoid the sun whenever possible and am nervous that my skin will react badly to what's essentially a crazy sunburn. Plus, I've been told radiation is exhausting and I honestly can't imagine being more tired than I already am and have been. I change into my gown and sit down in the waiting room. While I wait, Marilyn talks to me about the possible side effects and what I can do to ward them off. She tells me to use natural products like Dove soap. Huh? I tell her that Dove soap isn't natural at all and that the products I use are actually natural (i.e., don't have chemicals, parabens, fragrance etc.). I ask her what I'm supposed to avoid because I'm not going to start using unhealthy products now (I don't know why since I already had cancer). I'm to avoid anything with metals in them, particularly deodorant (which isn't a problem for me since I already use a natural deodorant - no I don't smell) and she gives me a "special" lotion to use often throughout the day and night. I don't know what I'm expecting, but it's just calendula cream (which I already own).

And then a young woman introduces herself as Iris and leads me to the treatment room. I lay down in another massive machine. I'm told to raise my arm above my head and hold on to a metal bar. The bed is covered with a sheet and Iris and another young woman tug the sheet back and forth for about 20 minutes. They're lining up my tattoos with 2 lasers. One is coming out of the wall and another from the ceiling. Their thin beams slice through my body. My arm is going numb again. And the technicians have to take x-rays that the doctor has to approve before treatment begins. And another doctor comes in to look at my skin and make sure it's okay for treatment (weird since I haven't started yet). He waltzes into the room saying "Hi, I'm Dr. Rose please don't move," in one breath. I don't. He says I look great and waltzes out of the room. I'm ready for treatment. A giant arm on the side of the machine starts moving. At the end of the arm is a huge metal disk covered in glass. Inside the disk are what looks like metal teeth (which I later learned are called levers) that open and close as the arm slowly rotates around my body. Each time the teeth open, a loud siren, similar to an MRI machine, sounds. The whole process takes about 5 minutes. By the end my arm feels like lead it's so heavy and numb. Iris comes into the room and thankfully tells me I can lower my arm. I get up, get dressed and go home. I slather my breast and armpit with lotion and apply it every hour. I swear my lymphedema is worse after 1 treatment. Boris thinks I'm crazy (although I'm not sure that has anything to do with cancer).

After the initial session, the others are incredibly quick (thank goodness since I go 5 days a week for the next 5 1/2 weeks). I'm back home within 30 minutes of leaving my house. The bulk of each session is spent lining up my tattoos with the lasers. After my third session, I go to change back into my clothes in the dressing room and I hear a woman crying to Marilyn. She can't believe she's sick. And then I hear her say that while her husband is very supportive, he's been complaining that she doesn't want to have sex. "I'm usually a very sexual woman," she sobs. "But I feel so terrible." I want to open the door and suggest that she tell her husband to fuck off, but I don't. I remember telling Boris that he could get a girlfriend when I was diagnosed (but I also told him that when Miles was born and he woke me up one night for nookie and I explained that he could get a girlfriend but could not, ever, ever, wake me up in the middle of the night). But I also know he never would and would never complain to me about his needs when I'm not feeling well. I feel sad for her.

I go home to find Miles on the potty pulling on his penis. "You have to point your penis in to the potty," I tell him (since he's peed on me way too many times). But he tells me that he's trying to put his penis in his belly button, and suddenly I'm not sad anymore. I laugh and laugh and am so thankful for him. But as I'm snuggling with Miles before bed he says "mommy is sad." "I'm not sad, monkey," I tell him. "Do I look sad?" "Mommy's eyes are sad," he says. And he goes on "mommy's new boobies sad." I tell him that my new boobies are very happy as am I. "You feeling better mommy?" he asks. "Yes, monkey," I assure him. "Mommy is feeling better." But I'm sad again because my poor child is constantly wondering whether I'm sad or feeling okay and every time I get dressed he asks "you going to the doctor mommy?" And now when he asks to see my "boobies" he says "mommy have new boobies?" And then he'll touch them and say "take these off" or "can I take these off?" and I have to explain that the doctor had to take my old boobies off because they had cancer but my "new boobies" get to stay. And sometimes when he plays he'll tell me that his truck isn't feeling well and he's taking it to the doctor so it can feel better. One of my friends tells me that her daughter asks if she's going to work every time she gets dressed and it's really no different but I'm not so sure. And he recently asked Boris where his nipples were and wanted to know where mine were. Eek.

The next afternoon I go to see Dr. McAndrew after radiation. I wait 2.5 hours and am livid. Apparently the patient before me had a double mastectomy after months of chemo and the pathology report showed numerous tumors. I can't imagine how horrifying that must be and I remember being the patient who Dr. Mcandrew spoke to for hours so part of me understands, but waiting on the other side of the door sucks. I just want to go home to my kids. During my check up, Dr. McAndrew tells me how fantastic I look and now that I'm not pregnant or swollen with chemo agents, she "can't believe how tiny" I am. It almost makes up for the 2.5 hour wait. I tell her about the woman I met at Dr. Slate's office who was misdiagnosed with triple negative breast cancer and is now dying of carcinoid cancer which has ravaged her body. She assures me that I should feel confident that my scans were all clear. She explains that scans detect triple negative cancer very well while carcinoid cancer is much more difficult to detect. She also assures me that I don't have carcinoid cancer. Of course there's no way to know if there's a microscopic rogue cancer cell floating around in my body, but if there was something growing, the scans would detect it. I run home after almost 3 hours to be with the boys. We play for 5 minutes before it's time for their dinner and bed.

Before I know it, I'm done with my second week of radiation. I am exhausted. Crazy, crazy exhausted. My skin starts to hurt, especially under the armpit. It makes wearing clothes uncomfortable and so I spend all of my time at home in loose t-shirts. And I'm very pink. I swear that my left breast already looks different. I make Boris look at it 78394 times a day. He swears they look the same. I also swear that I'm having difficulty breathing and so I tell Dr. Botnick when I see him at my next appointment. He has no idea why that is but it's not from radiation. He suggests perhaps it's because Los Angeles is on fire. Perhaps.

Despite my daily appointments, I feel like my life is getting back to normal. My new almost-post-cancer treatment life. When I was initially diagnosed, the only thing I worried about was cancer. And dying. But lately I feel the everyday stresses and worries creeping back into my life -- little things that I used to worry about but swore I wouldn't post-cancer, like bad naps and getting Miles into my dream preschool. One day I get a call from Dr. Botnick's office as I'm about to pull into the parking lot. The machine is broken and I'd have to wait at least 30 minutes before getting treatment. I ask them to call me 10 minutes before I should come in and drive back home. Baron woke up after a 20 minute "nap," and I want to get home. Plus Miles has been jumping out of his crib and I'm not sure he's slept at all. When I get home, I see Miles heading over the side of crib yelling "I'm awake. I need a book! I'm coming out!" I try explaining to him for the millionth time why it's unsafe for him to climb out of his crib but he doesn't believe me since he skillfully lowers himself to the ground. I try explaining to him for the billionth time why it's important for him to rest his body. He responds, "I'm not sleeping. I'm awake." No nap. I'm stressed. The boys are kindof a disaster all afternoon and I feel my impatience and frustration rising. To make matters worse, Dr. Botnick's office calls to tell me the machine still isn't working and they're not going to be able to treat me. I'll have to add on an extra session. Fuck.

Boris and I lay in bed that night and I tell him about my day. In the middle of my story about Miles hurling himself out of his crib, Boris turns to me and says "I forgot that you used to have arm hair. I think it's darker than it was." I smile and thank him for keeping things in perspective. Who cares about naps when I don't have cancer and my hair is growing back? I haven't had body hair in so long that I forget what to do with it now. And I forget that it's even there. One weekend while swimming with the boys and friends, I notice that my leg hair is back. Exciting. But it has got to go, so the next day before heading to the beach for a birthday party (otherwise the beach and I do not get along) I grab Boris' razor and quickly shave. Apparently I also forgot how to shave because I have razor burn for a week.

The next morning I take Miles to his 2 year checkup with his pediatrician. The past few appointments have been really challenging because he is so distraught at the office that the doctor can barely look at him. Before we go, I explain everything the doctor will do, just like I always do. I tell him that nothing she does will hurt except that he will get a shot at the end, which will hurt but only for a minute. He is a superstar at the appointment. He lets the doctor examine him and says "it's time for a shot?" He wails as he's pricked and the nurse asks him if he wants a lollipop. "I need it," he says. And the tears stop. That afternoon I see him heading over the side of his crib. I give him the "crib jumping isn't safe resting your body is important" explanation but he starts screaming. Baron is asleep and I can't bear the thought of 2 sleepless boys so I decide to take Miles with me to radiation even though I know I should let him scream and enforce rest time. He thinks it's the best place ever because everyone tells him how cute he is and Marilyn gives him a piece of candy (with my permission, of course - and no he doesn't come into the actual radiation room with me). He sucks on a jolly rancher for the next 45 minutes saying "what's Miles tasting?" over and over again.

And so begins the daily fight of Miles wanting to come to the doctor with me. Every time I tell him I have to go the doctor he wants to come. And have candy. I tell him that candy isn't nutritious because it has so much sugar in it, so we don't eat it very often. On several occasions I put Miles down for his nap (which he thankfully started taking again) and he asks if I'm going to the doctor. I try to ignore the question and tell him that I will be home when he wakes up. He repeats his question until I answer it. My answer was totally non-responsive so I'd object, too. One morning my mom comes to take Miles to her house for 30 minutes while I go to radiation. Miles starts crying that he wants to come to the doctor with me so I take him. He asks for a candy the second we walk through the door. I change into my gown and sit down with him in the waiting room. There's another young woman sitting across from me with her young son. He's 4. He and Miles chat while his mom and I discuss our cancer and treatment and how crazy the last year of our lives have been. As Miles is licking his candy he turns to his new friend and says "it's not tritious (aka nutritious). Too much sugar." After treatment I go to see Dr. Botnick. Miles comes with me. Dr. Botnick opens my gown to see how my skin is holding up. "Your new boobies feeling better mommy?" Miles asks. Dr. Botnick starts laughing. He asks if I hurt under my arm since the skin is so raw. It hurts like hell. But my skin otherwise looks good. I ask him if my left breast looks different than the right. I want another opinion besides Boris. He shakes his head no and rolls his eyes. Then he points to Miles and reminds me what my end goal is. To live. "You're gorgeous. I'm not just saying that. Gorgeous and charismatic and you can fix your breasts if you don't like them. But they're not different." I love him.

As my last week begins, my skin gets more red and I get more exhausted. So exhausted that I often fall asleep on the table during my 5 minutes of treatment. I'm okay if I'm in motion, but given the opportunity to lay down, I'm out. And it takes a lot to get me out of bed in the morning. I want to get up, I just can't. My skin gets so red that Dr. Botnick has to see me before treatment to make sure I can proceed. It feels like my skin is on fire. I learn that the symptoms might get worse for a few weeks after treatment ends (just my luck). But I have 2 treatments left. That's it. Then I'm done. Done. Done! Over a year of treatment and it's finally almost over. Really, really over. There's nothing else left except staying healthy and cancer free.

Miles comes with me to both of my appointments on my last day. He gets candy and draws with Marilyn while I'm treated. As we drive to my last treatment, Boris texts me writing "is it official?" I get dressed after my last treatment (fucking finally!!) and leave the dressing room. Marilyn hands me a certificate of completion which is hilarious and cheesy and very sweet. Miles and I hug and kiss and sing Yellow Submarine (his favorite new song) and go home to see Baron. At a red light I take out my phone and write to Boris "it's official."

My brother comes over with a box from Tiffany's. I'm excited. I open the box to find a silver key chain etched with "fuck cancer" on it. It's so fitting I just love it. Seth tells me that the engraver initially protested because they "don't engrave curse words," but made an exception after hearing my story.

My end goal is to live. I want to watch my amazing boys grow up. They get more amazing by the second. Baron is sitting up and crawling and babbling. We all love talking with him as he carries on conversations that make him and us chuckle and laugh. And after months of narrating everything Miles does to Baron, Miles now does the narrating. He spends all day long telling Baron what he's doing and everything he sees. It's a constant stream of "look Boonie, Miles is dancing. Boonie, that's a door. Boonie, that's a tree. See the leaves? See that Boonie? I'm playing with my trucks, Boonie. Boonie, you're near the edge. The floor is far away." It's what pulled me through the last year and will make me fight for each day of the rest of my life.