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.