The Aftermath

After chemo, I go in to Tower the following 2 days for hydration. Although I'm not nauseous, I'm too afraid that I will be if I don't go. My headache persists for the next week, but it gradually lessens and it's tolerable. Sure I could take Tylenol, but I figure that chemo is enough for Miracle so I'd rather suffer a little (or an unbelievable amount) to subject him to as little harmful stuff as possible. The worst side effect I'm suffering is indigestion. I swear there's acid in my throat and mouth. And I can feel every piece of food moving down my digestive tract. It's totally disgusting, but I promised Miracle that no matter what I'd eat a good diet full of protein we both need, so I force feed myself cruciferous veggies and protein with every meal. Pregnancy cravings and a chemotherapy diet so don't mix. I also have the worst cotton mouth ever. I'm drinking 5 liters of water a day and receiving 3 liters of fluid over the course of 3 days. You'd think I'd be beyond hydrated. Apparently not. I do pee about every 20 minutes which means I'm not getting much sleep. But the indigestion begins to subside over the week and if it weren't for the pain in my arms, by the second week after round 1, I'd feel almost normal.

About my arms, the 2 week recovery I was told about after my lumpectomy was a lie. It's been 3 weeks and I still can't lift my left arm past my shoulder. And the port that was no big deal is a really big fucking deal to me. It hurt so badly the day after it was inserted that I couldn't drive myself to my doctors appointments. The day after round 1, I had to see the cardiologist for a baseline EKG and then was hydrated at Tower (to hopefully keep the nausea at bay). The EKG was real fun since I couldn't lay on my left side or raise my arm above my head. So the poor technician had to maneuver around my giant, swollen breast to get the necessary images of my heart. It took twice as long as usual. Immediately afterward, while I was being hydrated, I asked the nurse to check my port and make sure it was in fact inserted properly. Since everyone swore it wouldn't hurt, surely something had to be wrong. But she assured me that it looked perfect. "So how long will hurt for?" I ask. "The truth this time, please." I'm told 2 weeks (just a side note that 1 month after the surgery, I still can't lift my left arm much past my shoulder and still have tightness in my right arm from the port).

I'm also told that I can't lift anything heavy for 2 weeks because my right arm needs to heal. I'm not supposed to lift anything heavy with my left arm...ever...to avoid lymphodema. So that leaves me armless, at least for 2 weeks. I ask one of the nurses how I'm supposed to lift my son. "How old is he?" she asks. I tell her that he's 1. She asks if he's walking. He is. "So you don't have to carry him," she says. "Well," I tell her, "Miles is indeed gifted and advanced for his age, and although I'm sure he understands English perfectly, he doesn't stop playing when I tell him it's time for a nap or a meal and he's incapable of catapulting himself into his highchair or crib." But interesting thought.

So for at least two weeks, I can't care for Miles the way I want to. I don't like needing help. I've never needed it. But now, I need help carrying him (after all, he's 26 pounds), and my arms tire when I push him on the swing, and I've been told to avoid the sun because chemo makes my already sensitive skin even more sensitive. So I have a small army of friends and family who are by my side at all times. They come to the playground with me, they have playdates at my house, they leave their own children at home to come help me, they help me feed Miles dinner and bathe him and put him to bed. I've watched some of my friends do my dishes while they rested their own babies on their hips. I am so lucky to have these people in my life. And while I'm so grateful for the help, it makes me sad. I feel sad to sit on the sidelines and watch someone else push my son on the swing or carry him around the house when I want to be the one doing those things.

The following Tuesday after chemo, I return to Tower for a blood draw. This will let my doctors know how I'm responding to the chemo and the havoc it's wrecked on my body so far. Angela, the head nurse, rushes by and says "I'll be right with you gorgeous." When she comes to discuss my blood results with me, she tells me how great I look in my purple dress. I think back to the last few appointments I've had at the Breast Center and am realizing that each time I go, the receptionist compliments my shirt color, or my eyes and the nurse will comment on my shoes. I wonder if they're trained to compliment sick people? It's nice, I guess, but I still have cancer, so who cares if I have cute shoes (although it's true that my shoes are usually noteworthy)? Angela is pleased with my blood work. I'm in good shape at the moment which is a relief. Plus, I have virtually no side affects. And I still have all of my hair. I ask if it's possible that it won't fall out. "I have so much of it," I exclaim. Maybe I'll be an exception? "Give it two weeks," Angela says. I sigh. She was right. Not 10 days later, my hair starts to go (only on my head).

A few days before round 2 of chemo, I start to experience excruciating pain in my mouth. My upper gums are incredibly sore and my tongue is raw and swollen. I ignore it at first, but the pain becomes so intense that I cry when I eat. I was warned about mouth sores caused by the chemo (called mucositis or something mucousy and gross), but don't feel any sores in my mouth. I go to see the nurses at Tower to see if there's something that can help the pain because I'm afraid it will become so bad I won't be able to eat. And I don't break promises, so I have to eat (I'd just prefer to do so without crying). I'm sporting my wig and Anne tells me that she likes my haircut. I smile a sly smile and she can't believe I'm wearing a wig. "It's so real," she says. "No one will ever know." Anne and Angela don't see anything in my mouth and explain that it's very unusual to experience a side effect from chemo so late in the cycle. Perhaps it's pregnancy related or a side affect of my indigestion, Angela hypothesizes (and side note - before Angela looked in my mouth, she needed to take a moment "to admire me." Swear.). They take a swab of my gums and throat to be sure. Angela tells me that there is a mouthwash they can prescribe that will help with the pain but she's not sure it's safe for pregnancy (again, why a mouthwash might be problematic but chemo isn't, is mindboggling). I'm sent home sans mouthwash and am told that if the swab reveals any infection, someone will call me. Neither Anne nor Angela will be working the next day.

So of course I wake up the next morning in agony, look inside my mouth and see bumps on the back of my tongue. I don't know if they weren't there yesterday or if everyone missed them, but I need help...now. I call Dr. Ottavi on her cell phone to ask if the mouth wash is safe. It is. Without calling the office, I get in my car and drive to Tower. I'm pissed. Why didn't they think to call Dr. Ottavi? I go in a scarf (which screams, I have cancer) and a tight tank top (which screams, I'm pregnant). I wait 40 minutes to see the nurse. She greets me in the waiting room where I'm surrounded by 4 or 5 people and asks what the problem is. "The problem," I say, "is that I was here yesterday complaining of horrible mouth pain and was sent home without any medication because no one thought to call my o.b. So now I'm here, again, have wasted 40 minutes of what could be a tragically short life, have gotten an o.k. from my o.b. to get the medication, which I'd like, NOW." The nurse suggests we go into an examination room "for some privacy." Fine. I tell her that I need my doctors to communicate and that if someone here doesn't know what to do with a pregnant person, they should call someone who does. She's extremely nice, gives me mouthwash and some other tips that might clear up the sores and keep them away. I apologize for being rude, but tell her I'm frustrated that I had to waste time at the doctor's office given that I'll be receiving mail here next week, and plus, I'm pregnant with cancer and am just plain pissed.

Thankfully, the mouthwash helps right away and the pain is tolerable. I can eat without being in pain. A few bumps remain on the back of my tongue which concerns me since I go in for treatment again in a few days. But all I can do is be thankful that for now, I'm feeling o.k.