It's Thursday. It's one of the big days I've been waiting for and dreading at the same time. I'm to have 2 of my 4 scans. A brain MRI and bone scan. I will finally know whether my cancer has metastasized. If it has, my doctor's goal is to prolong my life but curing me is out. If it hasn't spread, the goal is still to cure me since breast cancer is curable. Once it's metastasized ...not so much. It's almost an all day affair. I check in with the front desk at the Cedars' imaging center and am immediately sent to the "nuclear medicine" wing. I'm there with Cass and she asks me how long the doctors have told me I'll have to stay away from my kids. I have no idea what she's talking about. "When I had my MRI I was told I couldn't pick up my boys for 24 hours because of the radioactive dye used for the scan," she tells me. No one has mentioned this to me and I'm a little freaked out. And pissed. Who wouldn't mention this to me beforehand? "Just ask the doctor," she says.
I get called in a few minutes later and am led into a tiny room with a chair and some cupboards. A technician enters and tells me he's going to start an i.v. with some fluids and a radioactive dye for my bone scan. I ask him if the dye will preclude me from holding my kids. "How old are they?" he asks? I tell him 2 weeks and 18 months. "You're not breastfeeding, are you? he asks. I'm taken aback, tell him no and wait for him to answer my question. He tells me that I can hold Miles for 15 minutes an hour for the next 6 hours but that I shouldn't hold Baron until morning. I can be in the same room with them though. For the love of god. What a fucking nightmare. I can't believe I can't hold my boys and no one even thought to tell me. If I hadn't been with Cass I would have had no idea and would have snuggled them both for sure. Then we'd be one big radioactive family.
The i.v. isn't nearly as painful as I expect and the technician bandages my arm up within minutes of sticking me. "I've left a needle in so that you don't have to get stuck again for your MRI," he says. It's a little uncomfortable, but not bad at all. He tells me to go down to the dungeon for my MRI. I only wait about half an hour before I'm brought into the changing room. I change into my super sexy gown and am am led into the examination room. The MRI machine is massive. A technician comes in to greet me while another gets the machine ready. It's apparently been set up incorrectly because one of the technicians who read my file thought I was getting an MRI of the breast not the brain. I wait while the machine configuration is changed and lay down.
A young woman enters the room and tells me she's going to conduct the scan. "Have you ever had an MRI before?" she asks me. I tell her that I have although I wasn't given the contrast dye. "So you know it's really loud?" Yes. She hands me a pair of earphones and asks what kind of music I'd like to listen to. "It helps drown out the machine," she says. I tell her I'd like to listen to classical music but when I put on my earphones they're blasting opera. I hate opera. I call her over and tell her I'd like the pop station. I try to relax to Britney and songs I've actually never heard (one that's to the tune of You Spin Me Right Round) but the lyrics say "you spin my head round when you go down down." OMG. I'm horrified. And apparently old because I can't believe anyone would listen to this shit. And I'm secretly their target audience.
The scan begins. I have to lay perfectly still for about 45 minutes. I cry the whole time. Not because it hurts at all but because I'm so scared of what they might find. Plus, under normal circumstances if I heard the noises coming from the machine I would run for my life. It's like a war siren. After about 30 minutes, the technician enters the room again and tells me she's going to inject me with the contrast dye. She does and leaves the room. But one minute later she comes back in and says "you're breastfeeding? You can't do that." For the love of god. "I am not breastfeeding," I tell her. "Are you Sharon Shimanovsky?" she asks. Really for the love of god. I say yes. "Well this says you're breastfeeding," the technician goes on. "Well it's wrong," I tell her. "But thanks for reminding me that I'm not breastfeeding and for having a fight with me about it." Super cool. 10 minutes later I'm done. I wipe away my tears and change back into my clothes. I have about an hour before my bone scan. Cass and I go to eat, drink and be merry but it's pretty tough now that I'm just waiting to find out if my cancer has spread to places that will likely kill me. Plus, now I can't stop thinking about how sad and guilty I feel about not breastfeeding Baron. Especially since a recent article just came out that found Perchlorate, a type of rocket fuel, in 15 brands (not identified) of powdered formula. I promptly freaked out and emailed Baron's pediatrician with a subject line that said "having a heart attack," and sent her the article. She promptly responded "Please don't have a heart attack - I would hate for a news article to kill you after you have been doing so well fighting cancer!" (we heart her) and went on to explain that Perchlorate is not new news, is in many fruits and veggies and water and that in a 2005 it was found in most breast milk in significantly higher quantities than formula. Phew. I know that I didn't choose to stop breastfeeding him and that if he's anything like his brother he will be a super healthy genius regardless of the fact that formula touched his lips before he was 1 year old...but still.
We head back to Cedars for my bone scan. The machine is equally giant, but far more comfortable. It spins all around my body while tiny dots appear and disappear on a monitor above my head. The technician asks me if I've had surgery recently. I tell her about my c-section 2 weeks ago and she says she can see it on the scan. Interesting. I ask her when the results of the scan will be available. "Probably by the end of the day today, but for sure tomorrow," she tells me. And then I'm done. I go home to not hold my boys.
On the way home I call my internist who is affiliated with Cedars and is amazing. Knowing that Dr. McAndrew is always swamped and may not call me the second she receives results from my scans, I ask her if she can check Cedars' system tonight and relay any information to me. I decide that Miles should sleep at my parents' house just to be safe and Baron can stay there until Boris gets home. My parents feed Miles while I sit nearby and chat with him. I decide to spend my hourly 15 minutes giving Miles his milk and putting him to bed. Okay, so it might be a little longer than 15 minutes, but I think it should be fine since I haven't held him at all and won't be near him all night. Of course, it's the one night that Miles doesn't kick me out of the room like usual. On most nights, when he's finished his milk and we read a book or two, he tells me "mama, bye bye. Miles. Bed." Instead of being ousted, Miles gives me the greatest snugglage ever. He buries his little face into my neck and just hugs me forever. Then he repeatedly requests that I sing "tinka tinka " (aka "twinkle twinkle little star") while he opens and closes his hands making the twinkle motion. He actually takes my hands to make me clap and caresses my face all while beaming a giant smile at me. What's a mom to do? Even a radioactive mom who doesn't want to hurt her child couldn't resist. I was probably with him for 40 minutes, but I have to believe he'll be just fine.
I go home alone. It's eerily quiet in my house with no children around and I'm sad to not hold Baron. Boris brings him home an hour later and I kiss his head a few times an hour. At 11pm I get an email from my internist. It says "preliminary results for brain MRI is normal! Still waiting for bone scan results." Hooray!!! Finally, some good fucking news. And my phone rings the next morning at 730am. It's my amazing internist who tells me that my bone scan is also clear and that I should breathe a sigh of relief because that is huge. Huge. I want to be relieved but of course I ask her how reliable the scans are. I mean, I had a clear mammogram in May and we all know how that turned out. "Talk to Dr. McAndrew ," she says. "But they're very reliable. Not at all like mammograms which we all know aren't very effective for most young women."
I wait for Dr. McAndrew to call me with the final results, but she doesn't. I'm pissed. It's not like I'm waiting for the results of a pap smear or something and assume that no news is good news. Jesus. At least I already know that the preliminary results are fine so I'm not jumping out of my skin. I wait and wait and wait and...nothing. I decide not to call but rather to talk to her on Monday when I'm at Tower for chemo.
At Tower, I ask Angela if it's normal that I received no word about my scans. "Not normal at all," she says. "Dr. McAndrew was out of town and knew you would be here today." Hmmm. Sounds suspect, but whatever. Angela brings me the final results of the scans. CLEAR. I read it again. CLEAR. God I hope they're right.
It's Thursday again. I have my remaining 2 scans at Tower. The PET and CT. I don't really understand what they are and no one has really given me a good explanation except that together, they cover all soft matter in my body. I was instructed to eat an Atkins-esque diet for 24 hours before the scans. No carbs, dairy, starchy vegetables, beans, or sugar of any sort. And then no eating for 6 hours prior to the scan, which is set for 930am. The instructions also state that I'm not to exercise for 24 hours before the scans. Not a problem since sadly, I haven't exercised in months. I'm hungry when I check in at the front desk at Tower and take a seat in the waiting room. I pull out my laptop and am typing away when a woman in a white lab coat sits down next to me. She introduces herself and tells me she's going to be with me during the scans. She explains that after my i.v. has been started and I've been injected with radioactive dye, I'll have to sit as still as possible for about 2 hours. No typing or talking on the phone as that may cause the dye to pool in areas where there isn't anything to worry about (hence the no exercise for 24 hours prior). I wonder what the hell I'll do for 2 hours without my computer or phone. I also wonder whether the radioactive dye is the same as that used during last week's scans. I assume not since the instructions I received didn't mention anything about staying away from children and everyone at Tower knows about Baron and Miles. I tell her about Baron and Miles and that no one told me I wouldn't be able to hold them. "You can't," she states. "You actually shouldn't go home until 5pm and should stay about 15 feet away from them until midnight," she tells me. Even worse. "How come no one thought to tell me this before today?" I ask her. I am so upset it's ridiculous. I start to cry and she tells me that she had breast cancer when her daughter was 3. I have no idea why she's telling me this, but I guess it's because we're cancer sisters? She goes on to tell me that she's "lucky" to not be BRCA positive. Bitch.
Jose, the technician who often draws my blood calls me into an examination room to set up my i.v. I'm not worried about it hurting because he is the best at accessing my port. He's fast and there's no pain. Sadly, this i.v. was neither fast nor painless. For some reason it's excruciating and I nearly pass out. Jose hands me a barf bag...just in case. I am weak and lightheaded and am just hoping that I don't throw up. I've had enough trauma for the day. After several minutes, Jose takes my bag and computer and leads me to the imaging center at Tower. I didn't even know this part of the office existed. The imaging center is housed behind thick steel doors and I sit down slowly in the waiting room. My arm is killing me where the i.v. is bandaged up. I'm asked to fill out some paperwork and can barely hold the pen. And then the woman I met previously comes to get me. She asks if I'm okay enough to move forward with the scans. I don't want to delay and don't want to have to eat only protein for another 24 hours. I tell her that my i.v. is unbelievably painful but that I'm okay. Still a little nauseous. She injects me with the dye. While I'm waiting, Anne walks by to get some warm towels and says hello. I tell her that I am livid about this whole radioactive-can't-hold-my-kids situation and that I want to throw up. She kisses me on the cheek and leaves.
A nurse takes me to a small room with two large lounge chairs and a television. She hands me a remote control and reminds me to be as still as I can. Although I've been cautioned about the phone (the example she gave me was that she once had a Realtor who was on the phone for 2 hours have an abnormal result due to her excessive phone use - you know how Realtors are), I have to make arrangements for Miles and Baron. I'm lucky that I have so much help and wonder what people who don't have family nearby do. I also text Debbie and tell her she has to take me to lunch because I'm a wreck and surely can't drive. I didn't think the scans would be a big deal after last weeks so I was flying solo at Tower).
After 1.5 hours a nurse comes to tell me that I should go to the bathroom as my scans are about to start. I thought I had read that I was supposed to drink a glucose drink before the scan so I ask her if I need it. She tells me that it's chalky and pretty gross and since I was so nauseous I'm not going to have it. I'm assuming that the scans will still be accurate but am already nervous that they won't be as reliable as they otherwise might. The room where the machine is is freezing. I'm wearing sweats and a thermal but the nurse tells me that I have to change into a gown because the sweats have metal on them where the drawstring is and my bra has a metal under wire. The machine doesn't like metal. I lay down on my back and she covers me up with warm blankets. I have to lay with my arms above my head so that they "can get a good look" at my lymph nodes. It's ridiculously uncomfortable and the i.v. is still making me want to cry. I have to lay like that for almost an hour. The tray I'm laying on slowly moves from one end of the machine to the other. The nurse is very nice and constantly tells me that I'm doing great and eventually, when I think I can't take it anymore, that I'm almost done. I get dressed and the nurse instructs me to eat lots of carbs. Done. I wish I was under doctor's orders to do that more often.
I leave a message for Dr. McAndrew asking her to call me as soon as she has results from the scans.
Even though I was told to stay 15 feet away from my kids, I go home and quickly make out with Miles. Then I nap by myself since I can't snuggle Baron and need to be quarantined. I decide that Miles will sleep at my parents' house again and we'll have our baby nurse come that evening to take care of Baron. I take both boys to my parents' house and watch from a distance as my Dad gives Miles dinner and my mom holds Baron. As my Dad is putting Miles to bed, Miles repeats "have Mommy, have Mommy, have Mommy." Just shoot me.
Since I have no boys at home, Nitasha suggests that we go get a massage. I'm not really supposed to have massages lest my lymphedema act up, but I ask her to find out if any of the masseuses know about the lymph system or alternatively, if they know acupressure which is supposed to be fine for me. She finds me a masseuse who will do a combination acupressure/Swedish massage. Yay! My massage is relaxing, but not nearly as fabulous as I would have liked. I like really firm massages and "acupressure" just doesn't cut it. But I don't want to piss off my arm, so I settle for relaxation. My masseuse is very sweet and massages me for longer than an hour. When she's finished, she tells me about a health food store in Venice that has a book I "have" to get about why eating a raw diet will cure me of cancer. Not vegan, just raw. "Sushi with cream" is particularly good for me she tells me. Gross. And weird. Most "cancer diets," cut out dairy completely and as much fat as possible so cream seems surprising.
Before we leave, Nitasha and I sit in the Burke Williams' lounge drinking water and I check my cell phone. I see I have a message from Tower and check it immediately. It's Dr. McAndrew . She's left me a message at home too, but wanted me to know that my PET/CT scans were clear and normal and she's thrilled. I am too. I hug Nitasha and cry.
Finally some good news. And good news of the utmost importance. My doctors are hoping to cure me. Not prolong my life, but get rid of this shit for good. Me too.
Wednesday, March 25, 2009
Tuesday, March 24, 2009
Just Another Manic Monday
It's my first day of cycle 2 of chemo. My appointment is for 930am as I was told that it's very possible I could have an allergic reaction to my infusion and it could take all day. I spend the morning breastfeeding Baron for the last time. Of course, my milk supply is just building up and he's finally eating more. I cry the whole time. It's so sad to know this is the last time I will ever breastfeed my children. I have almost no time with Miles before I have to leave and I cry some more as I kiss both boys goodbye. I kiss Boris and cry some more. Who has a baby and starts chemo 2 weeks later? But Nitasha is waiting outside for me, so I pull myself together and walk out the door.
Nitasha and I pull into the parking lot of Tower 5 minutes later. The receptionist at the treatment center greets us with a big smile and asks how the baby is doing. "He's doing great," I tell her. Eating and growing and thankfully, sleeping. "And how's mommy doing?" she asks. "I'm pretty sad to be here," I lament, "but am otherwise okay. I'm taken to a chair right away. I meet my nurse for the day, Nellie. I'm a little disappointed that Anne isn't there, but Nellie seems nice. She asks me a few questions about the break I've had from treatment and then accesses my port and takes my blood. She also checks my c-section incision. "So you had surgery a month ago?" she asks? "2 weeks," I tell her. "Wow," she responds. I would have said "fuck," but "wow" will suffice. My incision has healed nicely according to Nellie and my blood counts look good. I'm given the okay for treatment.
Angela comes to talk to me before the infusion begins. She asks to see pictures of Baron. "He's a month old?" she asks? "2 weeks," I reply. I don't know why no one knows when he was born, but whatever. I pull the pictures up on my computer but we're sidetracked with chemo explanations and questions and she forgets to look. I want to know if I'm getting steroids, what they'll do to me and whether I need hydration. Angela tells me that there will be a steroid dripped through my i.v. It's to help me eat and hopefully feel as good as possible. It shouldn't make me too energetic because I'm also being given a huge dose of Benadryl which will pretty much knock me out. I wonder how my body will react to uppers and downers at the same time. Angela says she's going to re-confirm everything with Dr. McAndrew before my infusion begins. When she returns, she tells me that the plan is for me to receive 3 weekly treatments and then have a week off for my body to recover. "That is not the plan," I tell her. "Dr. McAndrew and I discussed weekly treatments, period. I don't want a week off." Angela explains that my body has already taken a huge hit with the first cycle of chemo and that the revised plan will ensure time for me to recover if my body can't handle cycle 2. "I don't want to assume that my body can't handle it," I tell Angela. "Let's assume it can and we'll skip a week only if I have to. I want as much treatment as possible. I never want this shit to come back and I never ever, ever, want to do this again." She goes to talk to Dr. McAndrew who agrees.
Angela tells me that I'm going to be just fine. "I hope so." My standard reply. "You will live to see your boys grow up and become successful adults. You'll dance at their weddings," she goes on. I start crying as she's talking. "I hope so. I hope so. I hope so," I repeat. She doesn't know but I sure hope she's right. I sob some more and then Angela starts to discuss the drugs I may need to get through this second cycle. "I'm going to prescribe you more Zofran (nausea) and something even stronger in case you need it. And you might need Ativan in case you're stressed and can't relax or sleep." I wonder who has cancer and isn't stressed and who has cancer and sleeps well? And throw in a newborn who wakes up every 3 hours to eat. I've been tired since August and have gone without sleeping pills so I don't know why I'd start now. If I have joint or muscle pain I can take Advil or she can prescribe something stronger. I have no intention of taking any of the drugs but take the prescriptions anyway. I'm already a pharmacy with a nice supply of pain killers that I've never taken. I should turn it into a business. I could star in my own private Weeds.
Nellie gives me literature on my new chemo agents that includes how they're made and the possible side effects. It's a nightmare. Reading it makes me more nauseous and afraid then reading The Jungle or Edgar Allen Poe. She tells me that because some of the side effects can be permanent (like neuropathy in the extremities) there will be required tests along the way to monitor me. I'm terrified. And then we begin the infusion. First Benadryl and other medications to help with allergic reactions and nausea. I feel drugged immediately. As she begins the drip of Taxol she tells me that the infusion will be incredibly slow and that I'm to be heavily monitored. She wasn't kidding. The nurse takes my vitals every 10 minutes and Nellie asks me a zillion times whether I'm itchy and can I breathe and am I short of breath and is my throat closing up. Shit. I don't think so but I'm so nervous I don't know what I'm feeling. I just keep saying no. It's all relative, right?
During the infusion, I meet a young woman receiving treatment next to me. We're the same age and have matching hairdos. We tell each other how good we look and ask about each other's cancer. Breast cancer all around. Her's was stage I though and she's HER2 positive so she gets the benefit of Herceptin. She cries when I tell her about Baron. She's resigned to the reality that she's probably not going to have children. She's single and will be in treatment for another year. She chose not to freeze her eggs. I can't imagine how horrible that reality is if she wanted children. But I tell her how lucky she is to be stage I and to get Herceptin. We talk about treatment, our doctors and detoxing as soon as we can.
Katie 1 brings Nitasha and I lunch and Boris comes to visit, too. I look like I'm holding court. I suppose I am. Katie cries when she sees me. "I was supposed to see you with Baron first," she says. "Mommy Sharon. Not cancer Sharon." We eat and chat and after 5 hours, I get to go home.
Miles is asleep when I arrive. But Baron has just woken up and is ready to eat. I get to feed him and snuggle with him for an hour before Miles wakes up. And then I get to play with Miles the rest of the afternoon while Baron naps. I think this isn't so bad. I'm so happy with my boys it makes everything better. And Miles is so funny it's really the best medicine. He used to say "uh oh" when he dropped something or as a warning that he was about to throw something (he'd say "uh oh" and then hurl food onto the floor). Soon that morphed into "oops," and lately when he drops something or falls he says "sorry." So he'll crash into something and say "sorry, sorry," and I always respond "it's okay, Miles," or "that's okay, Miles. Things fall etc." In the evening as I'm sitting with Miles reading with him and giving him his milk, I spill some on him and say, "oh, sorry Miles." And Miles turns to me and says "it's otay. It's otay." I heart him.
That night my head is pounding and I'm incredibly itchy. But other than that, I feel remarkably good. Too good. I wonder if the drugs worked or if I just need to wait longer to feel like shit. But I wake up feeling okay in the morning. I still have a headache and am still itchy, but I'm functioning and not too groggy. This doesn't seem so bad. As I'm laying in bed with Baron I hear Miles yelling "pee pee, pee pee, pee!" So I get out of bed and ask Miles where the pee pee is and he leads me into the hallway and exclaims "here it is!" Then he turns to Baron and says "hi Boon." And then he's off. We eat breakfast together and as I place my feet up on his highchair he tells me "mama, foot, bye bye." Geez.
Each day I wait to feel worse. But I don't. The itching subsides and I can deal with my headache. I've had one since August. I'm just hoping it's chemo and not brain cancer. By the end of the week I realize that I'm not going to feel like death. At least not this week. My taste starts to change which is unfortunate and sad, but tolerable. Water tastes horrible and I'm supposed to drink several liters a day. But I force myself to drink and eat regardless of what it tastes like and I go on with life as usual (you know, my usual crazy, surreal life). Before I know it, it's Monday again.
Anne's back in town for round 2. We hug and briefly catch up. Then I'm whisked away to get weighed (a traumatic event that happens each week before my infusion). After losing 15 pounds in 2 weeks, I learn that I've just gained 2 pounds in the past week. Gained. 2. Pounds. Shoot. Me. Although Anne is asking me important questions about how I'm tolerating treatment and about the neuropathy in my feet and legs, I can't stop complaining about my weight gain. It's all I can think about. I'm pissed. And a little suicidal. Anne and my chemo date, Debbie, continuously remind me that I could pee and lose the weight immediately and that I need to remember that weight gain is temporary and trivial given the circumstances. But I already feel like a fat lesbian (no disrespect at all to my sisters who choose to wear their hair super short, but I didn't choose this look) and getting fatter is so rude. I know I had a baby 5 minutes ago but I should be losing weight each week, not gaining it. Shit. Worst mood ever.
To make matters worse, there's a new nurse at Tower who I see instead of Angela. She's nice but meek and can't answer any of my questions regarding my upcoming scans. She tells me that she's spoken to Dr. McAndrew and has set up my chemo schedule for 3 weeks of treatment and 1 week off. "What?" I ask her. "I just went through this last week with Angela. I'm having weekly treatment and am only having a week off if I can't handle it," I tell her. She says she's unaware of that but that I can "play it by ear," next week. I'm not amused and explain to her that I cannot and will not play chemo by ear, that I need to know what the hell is going on and why my schedule keeps changing and that unless someone can tell me what the research shows about taking breaks during chemo, I'm not going to consider it. Plus, would that mean that I'm to get chemo through June instead of through May? According to her, it would. I've already scheduled my surgery for early June and am mentally prepared to be finished with chemo in May, not June. I don't want to prolong this shit any longer than is absolutely necessary. She can't answer most of my questions so I ask her to please let me speak to Dr. McAndrew. I can tell that she has no idea what to do with me. Debbie sends me an email telling me how annoying she is. The joys of modern technology. The nurse seems nervous and says she'll go talk to Dr. McAndrew and will let me know what she says. When she returns she says that according to Dr. McAndrew, my prognosis doesn't change with the 3 week on 1 week off schedule but that there's not a lot of research yet. I am so frustrated I could cry but decide that I will deal with this next week when I am scheduled to see Dr. McAndrew. In the meantime, I tell the nurse that I am planning on getting chemo next week and to make sure the appointment is set up.
I have the same side effects after round 2 as I did after round 1. Headache, itchiness and exhaustion. But it's still tolerable. And I'm still waiting for things to get worse. They don't. And before I know it, it's Monday again.
Round 3 starts out slightly better than round 2 because I have lost the 2 pounds I gained last week. But I didn't lose anything else, hence the slightly better part. My nurse for the day accesses my port. He asks me if its ever had problems with blood return. I never watch the nurses as they prick and stick me but I ask him what he's talking about and if something is wrong. He assures me that nothing is wrong but that he's not getting any blood out of me. He asks me to move my head in various directions, breath in deeply, cough. I want to vomit this is so gross. Nothing is working and so I keep doing neck and breathing exercises. He flushes my port numerous times telling me that there must be a small piece of tissue that's clogging the port. I ask him to never tell me what's going on again because that is so disgusting and wonder if he's going to have to start over again. He calls over another nurse who gets blood on the first try. He must have loosened the lid of the jar for her. My blood is taken and Angela comes to discuss the results with me.
"Your counts are good for chemo, but very low for you," she tells me. That explains why I am brutally exhausted (just in case getting up every 3 hours with Baron and then running around after Miles isn't enough of a reason). "If they get any lower, you will not get treatment next week. You need to be prepared for that." Ugh. "They can't go down," I say. Angela tells me that in all of her years in this field she has never seen anyone handle the chemo I was previously on as well as me. "You were the topic of many conversations here," she tells me. "You are amazing and handled it so well. You are so determined and each week you surprised us. So I wouldn't be surprised if you will you body to produce more blood so you can get treatment next week." We shall see.
After the infusion begins, I go to see Dr. McAndrew. We look at pictures of Baron and Miles and she tells me how beautiful they are (of course! but they really, really are beautiful). She asks about breastfeeding and how I'm doing now. I tell her that I was able to breastfeed for 2 weeks and that it was really sad for me to stop (especially knowing that I'll never be able to do it again if I'm able to have more kids). And I tell her that I'm incredibly itchy the night of treatment (despite the huge dose of Benadryl I'm given in my infusion) and that I've basically had a headache since August. Other than the neuropathy (which is also in my knees and calves on occasion), my taste buds have changed and food isn't as delicious as it used to be, but I'm otherwise okay. She's impressed.
And then we discuss my treatment. She tells me that I can get weekly treatments if my body is up for it but that if I have to miss a round or two it will not affect my prognosis. She explains that most people can't handle 100% of the treatment when they've previously undergone a full cycle of chemo. "Your bone marrow has taken a really brutal hit already and it's suffering," she explains. "Most of the studies show that if patients receive 80%-90% of the treatment, they do just as well as people who receive 100%." She says that I won't receive treatment past May (meaning that we won't tack on any missed treatments at the end if there are any) so I can keep my surgery scheduled for early June. What a relief. I ask if this is the case because this second cycle of chemo is icing on the cake (if that euphemism isn't too ridiculous) while the first cycle is what's really important. Dr. McAndrew explains that in her opinion, this cycle is just as important as the first. The Taxol I'm receiving is a Taxane based chemo and while some research shows it's not as effective with BRCA positive breast cancer patients, BRCA positive ovarian cancer patients who receive Taxanes fare much better than their BRCA negative counterparts. And the Carboplatin I'm receiving is recently being used to treat triple negative tumors and the preliminary studies are very positive.
Best of all, she says that come August, I will have been cancer free for 1 year. 1 year! It's a great milestone even though I'll have been in treatment the entire time. The only benefit of having a triple negative tumor is that unlike other breast cancers, it doesn't come back after many years. If I make it 2 years without a recurrence, my chances of a recurrence plummet. And if I make it 5 years without a recurrence, it's almost a certainty that it's never coming back. And if I make it 8 years without a recurrence, it's never coming back. Ever. 8 years seems like an eternity, but I can't believe I'm not too far off from the 1 year mark.
I set my appointment for the following week knowing that I may only have a blood draw. But I will hope that I can plow through. I go home to my boys. Baron is sleeping but I pick him up and get into bed with him. He's delicious and doing so well. He gained 2 pounds his first month and looks like a real baby (instead of a chicken) with an 87 year old's face. We wake up to Miles yelling "hello!" and pounding on the door. He reaches his little arms up to me and says "mama, hug, bed." I pick him up to snuggle but Miles thinks our bed is a giant trampoline and starts bouncing about. He does sit down for a minute (informing me that "Miles, sitting.") but pushes me away and says "bye bye." "Do you want me to leave, Miles?" I ask him. "Ya, otay," he says. Nice. And before I know it, it's Monday again.
I jump onto the scale wondering if I'm going to be in a good mood or a bad mood during round 4. Bad mood. I've lost nothing. Nothing! What is going on? Am I going to retain the rest of my baby weight for the next 2 months? So rude. The good news however is that my counts are really good. My white blood count almost doubled since last week. Angela is amazed and tells me she wants to "bottle" me. "You did it," she says. I'm given the green light for treatment. My infusion is totally uneventful except for a fight I have with my insurance company regarding a $64,000 bill they sent me for "unknown Shimanovsky." It's for Baron but since the hospital billed them without his name (weird since they knew it the second he popped out) Blue Shield is pretending they don't know who he is and is denying the claim. It's kindof like when I practiced law and had to object to opposing counsels' written requests for information on the basis that the questions were too vague or ambiguous even though I knew exactly what information they wanted. If I actually get a bill from the hospital I'll deal with it then. For now, I tell the "health care advocate" (are you fucking kidding me?) from Blue Shield that she is absurd and that I'm not paying one cent of this bill. I leave round 4 with a headache and itchy as usual.
I go home to my boys and take Miles to the park that's a few blocks away from our house. He starts crying "no want it," as I try to get him into the stroller. "Car! Car!" he yells at me. "You want to go to the park in the car?" I ask him. "Otay, ya," he says. I guess he's a proper Angelino. We swing and play in sand, Miles begs for food from total strangers and I feel like a relatively normal Mom. He's obsessed with trucks and cars and points out taxis, buses, street cleaners and almost has a coronary when a cement mixer drives by. "Mixer, mixer!!" he shouts with glee. When I was in college I would get so upset when parents would tell me their child was "all boy," or "all girl." I honestly believed that there was no innate differences between men and women but rather we were taught to have gender "appropriate" preferences. Then I had Miles and I swear I didn't only make him wear blue and certainly never did anything to foster a love of motor vehicles. He has a wide range of toys, including dolls, and zillions of books. But...he's all boy and only wants to read about big rigs and diggers and finds the one patch of dirt wherever we are and rolls around in it. And I love it. And so we read his truck books before bed and the day is over. I snuggle with Boris and Baron as we go to sleep.
Before I know it, it will be Monday again.
Nitasha and I pull into the parking lot of Tower 5 minutes later. The receptionist at the treatment center greets us with a big smile and asks how the baby is doing. "He's doing great," I tell her. Eating and growing and thankfully, sleeping. "And how's mommy doing?" she asks. "I'm pretty sad to be here," I lament, "but am otherwise okay. I'm taken to a chair right away. I meet my nurse for the day, Nellie. I'm a little disappointed that Anne isn't there, but Nellie seems nice. She asks me a few questions about the break I've had from treatment and then accesses my port and takes my blood. She also checks my c-section incision. "So you had surgery a month ago?" she asks? "2 weeks," I tell her. "Wow," she responds. I would have said "fuck," but "wow" will suffice. My incision has healed nicely according to Nellie and my blood counts look good. I'm given the okay for treatment.
Angela comes to talk to me before the infusion begins. She asks to see pictures of Baron. "He's a month old?" she asks? "2 weeks," I reply. I don't know why no one knows when he was born, but whatever. I pull the pictures up on my computer but we're sidetracked with chemo explanations and questions and she forgets to look. I want to know if I'm getting steroids, what they'll do to me and whether I need hydration. Angela tells me that there will be a steroid dripped through my i.v. It's to help me eat and hopefully feel as good as possible. It shouldn't make me too energetic because I'm also being given a huge dose of Benadryl which will pretty much knock me out. I wonder how my body will react to uppers and downers at the same time. Angela says she's going to re-confirm everything with Dr. McAndrew before my infusion begins. When she returns, she tells me that the plan is for me to receive 3 weekly treatments and then have a week off for my body to recover. "That is not the plan," I tell her. "Dr. McAndrew and I discussed weekly treatments, period. I don't want a week off." Angela explains that my body has already taken a huge hit with the first cycle of chemo and that the revised plan will ensure time for me to recover if my body can't handle cycle 2. "I don't want to assume that my body can't handle it," I tell Angela. "Let's assume it can and we'll skip a week only if I have to. I want as much treatment as possible. I never want this shit to come back and I never ever, ever, want to do this again." She goes to talk to Dr. McAndrew who agrees.
Angela tells me that I'm going to be just fine. "I hope so." My standard reply. "You will live to see your boys grow up and become successful adults. You'll dance at their weddings," she goes on. I start crying as she's talking. "I hope so. I hope so. I hope so," I repeat. She doesn't know but I sure hope she's right. I sob some more and then Angela starts to discuss the drugs I may need to get through this second cycle. "I'm going to prescribe you more Zofran (nausea) and something even stronger in case you need it. And you might need Ativan in case you're stressed and can't relax or sleep." I wonder who has cancer and isn't stressed and who has cancer and sleeps well? And throw in a newborn who wakes up every 3 hours to eat. I've been tired since August and have gone without sleeping pills so I don't know why I'd start now. If I have joint or muscle pain I can take Advil or she can prescribe something stronger. I have no intention of taking any of the drugs but take the prescriptions anyway. I'm already a pharmacy with a nice supply of pain killers that I've never taken. I should turn it into a business. I could star in my own private Weeds.
Nellie gives me literature on my new chemo agents that includes how they're made and the possible side effects. It's a nightmare. Reading it makes me more nauseous and afraid then reading The Jungle or Edgar Allen Poe. She tells me that because some of the side effects can be permanent (like neuropathy in the extremities) there will be required tests along the way to monitor me. I'm terrified. And then we begin the infusion. First Benadryl and other medications to help with allergic reactions and nausea. I feel drugged immediately. As she begins the drip of Taxol she tells me that the infusion will be incredibly slow and that I'm to be heavily monitored. She wasn't kidding. The nurse takes my vitals every 10 minutes and Nellie asks me a zillion times whether I'm itchy and can I breathe and am I short of breath and is my throat closing up. Shit. I don't think so but I'm so nervous I don't know what I'm feeling. I just keep saying no. It's all relative, right?
During the infusion, I meet a young woman receiving treatment next to me. We're the same age and have matching hairdos. We tell each other how good we look and ask about each other's cancer. Breast cancer all around. Her's was stage I though and she's HER2 positive so she gets the benefit of Herceptin. She cries when I tell her about Baron. She's resigned to the reality that she's probably not going to have children. She's single and will be in treatment for another year. She chose not to freeze her eggs. I can't imagine how horrible that reality is if she wanted children. But I tell her how lucky she is to be stage I and to get Herceptin. We talk about treatment, our doctors and detoxing as soon as we can.
Katie 1 brings Nitasha and I lunch and Boris comes to visit, too. I look like I'm holding court. I suppose I am. Katie cries when she sees me. "I was supposed to see you with Baron first," she says. "Mommy Sharon. Not cancer Sharon." We eat and chat and after 5 hours, I get to go home.
Miles is asleep when I arrive. But Baron has just woken up and is ready to eat. I get to feed him and snuggle with him for an hour before Miles wakes up. And then I get to play with Miles the rest of the afternoon while Baron naps. I think this isn't so bad. I'm so happy with my boys it makes everything better. And Miles is so funny it's really the best medicine. He used to say "uh oh" when he dropped something or as a warning that he was about to throw something (he'd say "uh oh" and then hurl food onto the floor). Soon that morphed into "oops," and lately when he drops something or falls he says "sorry." So he'll crash into something and say "sorry, sorry," and I always respond "it's okay, Miles," or "that's okay, Miles. Things fall etc." In the evening as I'm sitting with Miles reading with him and giving him his milk, I spill some on him and say, "oh, sorry Miles." And Miles turns to me and says "it's otay. It's otay." I heart him.
That night my head is pounding and I'm incredibly itchy. But other than that, I feel remarkably good. Too good. I wonder if the drugs worked or if I just need to wait longer to feel like shit. But I wake up feeling okay in the morning. I still have a headache and am still itchy, but I'm functioning and not too groggy. This doesn't seem so bad. As I'm laying in bed with Baron I hear Miles yelling "pee pee, pee pee, pee!" So I get out of bed and ask Miles where the pee pee is and he leads me into the hallway and exclaims "here it is!" Then he turns to Baron and says "hi Boon." And then he's off. We eat breakfast together and as I place my feet up on his highchair he tells me "mama, foot, bye bye." Geez.
Each day I wait to feel worse. But I don't. The itching subsides and I can deal with my headache. I've had one since August. I'm just hoping it's chemo and not brain cancer. By the end of the week I realize that I'm not going to feel like death. At least not this week. My taste starts to change which is unfortunate and sad, but tolerable. Water tastes horrible and I'm supposed to drink several liters a day. But I force myself to drink and eat regardless of what it tastes like and I go on with life as usual (you know, my usual crazy, surreal life). Before I know it, it's Monday again.
Anne's back in town for round 2. We hug and briefly catch up. Then I'm whisked away to get weighed (a traumatic event that happens each week before my infusion). After losing 15 pounds in 2 weeks, I learn that I've just gained 2 pounds in the past week. Gained. 2. Pounds. Shoot. Me. Although Anne is asking me important questions about how I'm tolerating treatment and about the neuropathy in my feet and legs, I can't stop complaining about my weight gain. It's all I can think about. I'm pissed. And a little suicidal. Anne and my chemo date, Debbie, continuously remind me that I could pee and lose the weight immediately and that I need to remember that weight gain is temporary and trivial given the circumstances. But I already feel like a fat lesbian (no disrespect at all to my sisters who choose to wear their hair super short, but I didn't choose this look) and getting fatter is so rude. I know I had a baby 5 minutes ago but I should be losing weight each week, not gaining it. Shit. Worst mood ever.
To make matters worse, there's a new nurse at Tower who I see instead of Angela. She's nice but meek and can't answer any of my questions regarding my upcoming scans. She tells me that she's spoken to Dr. McAndrew and has set up my chemo schedule for 3 weeks of treatment and 1 week off. "What?" I ask her. "I just went through this last week with Angela. I'm having weekly treatment and am only having a week off if I can't handle it," I tell her. She says she's unaware of that but that I can "play it by ear," next week. I'm not amused and explain to her that I cannot and will not play chemo by ear, that I need to know what the hell is going on and why my schedule keeps changing and that unless someone can tell me what the research shows about taking breaks during chemo, I'm not going to consider it. Plus, would that mean that I'm to get chemo through June instead of through May? According to her, it would. I've already scheduled my surgery for early June and am mentally prepared to be finished with chemo in May, not June. I don't want to prolong this shit any longer than is absolutely necessary. She can't answer most of my questions so I ask her to please let me speak to Dr. McAndrew. I can tell that she has no idea what to do with me. Debbie sends me an email telling me how annoying she is. The joys of modern technology. The nurse seems nervous and says she'll go talk to Dr. McAndrew and will let me know what she says. When she returns she says that according to Dr. McAndrew, my prognosis doesn't change with the 3 week on 1 week off schedule but that there's not a lot of research yet. I am so frustrated I could cry but decide that I will deal with this next week when I am scheduled to see Dr. McAndrew. In the meantime, I tell the nurse that I am planning on getting chemo next week and to make sure the appointment is set up.
I have the same side effects after round 2 as I did after round 1. Headache, itchiness and exhaustion. But it's still tolerable. And I'm still waiting for things to get worse. They don't. And before I know it, it's Monday again.
Round 3 starts out slightly better than round 2 because I have lost the 2 pounds I gained last week. But I didn't lose anything else, hence the slightly better part. My nurse for the day accesses my port. He asks me if its ever had problems with blood return. I never watch the nurses as they prick and stick me but I ask him what he's talking about and if something is wrong. He assures me that nothing is wrong but that he's not getting any blood out of me. He asks me to move my head in various directions, breath in deeply, cough. I want to vomit this is so gross. Nothing is working and so I keep doing neck and breathing exercises. He flushes my port numerous times telling me that there must be a small piece of tissue that's clogging the port. I ask him to never tell me what's going on again because that is so disgusting and wonder if he's going to have to start over again. He calls over another nurse who gets blood on the first try. He must have loosened the lid of the jar for her. My blood is taken and Angela comes to discuss the results with me.
"Your counts are good for chemo, but very low for you," she tells me. That explains why I am brutally exhausted (just in case getting up every 3 hours with Baron and then running around after Miles isn't enough of a reason). "If they get any lower, you will not get treatment next week. You need to be prepared for that." Ugh. "They can't go down," I say. Angela tells me that in all of her years in this field she has never seen anyone handle the chemo I was previously on as well as me. "You were the topic of many conversations here," she tells me. "You are amazing and handled it so well. You are so determined and each week you surprised us. So I wouldn't be surprised if you will you body to produce more blood so you can get treatment next week." We shall see.
After the infusion begins, I go to see Dr. McAndrew. We look at pictures of Baron and Miles and she tells me how beautiful they are (of course! but they really, really are beautiful). She asks about breastfeeding and how I'm doing now. I tell her that I was able to breastfeed for 2 weeks and that it was really sad for me to stop (especially knowing that I'll never be able to do it again if I'm able to have more kids). And I tell her that I'm incredibly itchy the night of treatment (despite the huge dose of Benadryl I'm given in my infusion) and that I've basically had a headache since August. Other than the neuropathy (which is also in my knees and calves on occasion), my taste buds have changed and food isn't as delicious as it used to be, but I'm otherwise okay. She's impressed.
And then we discuss my treatment. She tells me that I can get weekly treatments if my body is up for it but that if I have to miss a round or two it will not affect my prognosis. She explains that most people can't handle 100% of the treatment when they've previously undergone a full cycle of chemo. "Your bone marrow has taken a really brutal hit already and it's suffering," she explains. "Most of the studies show that if patients receive 80%-90% of the treatment, they do just as well as people who receive 100%." She says that I won't receive treatment past May (meaning that we won't tack on any missed treatments at the end if there are any) so I can keep my surgery scheduled for early June. What a relief. I ask if this is the case because this second cycle of chemo is icing on the cake (if that euphemism isn't too ridiculous) while the first cycle is what's really important. Dr. McAndrew explains that in her opinion, this cycle is just as important as the first. The Taxol I'm receiving is a Taxane based chemo and while some research shows it's not as effective with BRCA positive breast cancer patients, BRCA positive ovarian cancer patients who receive Taxanes fare much better than their BRCA negative counterparts. And the Carboplatin I'm receiving is recently being used to treat triple negative tumors and the preliminary studies are very positive.
Best of all, she says that come August, I will have been cancer free for 1 year. 1 year! It's a great milestone even though I'll have been in treatment the entire time. The only benefit of having a triple negative tumor is that unlike other breast cancers, it doesn't come back after many years. If I make it 2 years without a recurrence, my chances of a recurrence plummet. And if I make it 5 years without a recurrence, it's almost a certainty that it's never coming back. And if I make it 8 years without a recurrence, it's never coming back. Ever. 8 years seems like an eternity, but I can't believe I'm not too far off from the 1 year mark.
I set my appointment for the following week knowing that I may only have a blood draw. But I will hope that I can plow through. I go home to my boys. Baron is sleeping but I pick him up and get into bed with him. He's delicious and doing so well. He gained 2 pounds his first month and looks like a real baby (instead of a chicken) with an 87 year old's face. We wake up to Miles yelling "hello!" and pounding on the door. He reaches his little arms up to me and says "mama, hug, bed." I pick him up to snuggle but Miles thinks our bed is a giant trampoline and starts bouncing about. He does sit down for a minute (informing me that "Miles, sitting.") but pushes me away and says "bye bye." "Do you want me to leave, Miles?" I ask him. "Ya, otay," he says. Nice. And before I know it, it's Monday again.
I jump onto the scale wondering if I'm going to be in a good mood or a bad mood during round 4. Bad mood. I've lost nothing. Nothing! What is going on? Am I going to retain the rest of my baby weight for the next 2 months? So rude. The good news however is that my counts are really good. My white blood count almost doubled since last week. Angela is amazed and tells me she wants to "bottle" me. "You did it," she says. I'm given the green light for treatment. My infusion is totally uneventful except for a fight I have with my insurance company regarding a $64,000 bill they sent me for "unknown Shimanovsky." It's for Baron but since the hospital billed them without his name (weird since they knew it the second he popped out) Blue Shield is pretending they don't know who he is and is denying the claim. It's kindof like when I practiced law and had to object to opposing counsels' written requests for information on the basis that the questions were too vague or ambiguous even though I knew exactly what information they wanted. If I actually get a bill from the hospital I'll deal with it then. For now, I tell the "health care advocate" (are you fucking kidding me?) from Blue Shield that she is absurd and that I'm not paying one cent of this bill. I leave round 4 with a headache and itchy as usual.
I go home to my boys and take Miles to the park that's a few blocks away from our house. He starts crying "no want it," as I try to get him into the stroller. "Car! Car!" he yells at me. "You want to go to the park in the car?" I ask him. "Otay, ya," he says. I guess he's a proper Angelino. We swing and play in sand, Miles begs for food from total strangers and I feel like a relatively normal Mom. He's obsessed with trucks and cars and points out taxis, buses, street cleaners and almost has a coronary when a cement mixer drives by. "Mixer, mixer!!" he shouts with glee. When I was in college I would get so upset when parents would tell me their child was "all boy," or "all girl." I honestly believed that there was no innate differences between men and women but rather we were taught to have gender "appropriate" preferences. Then I had Miles and I swear I didn't only make him wear blue and certainly never did anything to foster a love of motor vehicles. He has a wide range of toys, including dolls, and zillions of books. But...he's all boy and only wants to read about big rigs and diggers and finds the one patch of dirt wherever we are and rolls around in it. And I love it. And so we read his truck books before bed and the day is over. I snuggle with Boris and Baron as we go to sleep.
Before I know it, it will be Monday again.
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