Two Weeks in Review

Hydration the following two days after chemo is the same as usual. My side effects are getting a little worse, but still tolerable. I still have mouth sores, incredibly painful indigestion and my fatigue is ridiculous. Sometimes I'm so tired that I actually can't move even when I just want to get off the couch and go to bed. It's a little scary. The second day of hydration, I make plans to meet another young woman, Katy, being treated for breast cancer. She was one of the non-pregnant cancer patients I wasn't going to meet, but then I learned that she was using a plastic surgeon (Dr. Slate) I had ruled out due to radiation (more on this in another post) and decided to call her. I am so glad I did. We have all of the same doctors, the same acupuncturist, both take power yoga with Vinny (or I should say took power yoga with Vinny since neither of us are allowed to do yoga due to lymphedema), are both struggling with lymphedema and both can't believe that this is fucking happening to us. It's so good to put a name to the face. I had seen her before at Tower, but she prefers the side of the treatment center that I don't like, so we had never spoken. She's particular too and I listen to her sweetly (but firmly) tell the nurse that hot nurse John is going to have to come to the chair she wants to sit in. She's there for her last round of chemo. I'm jealous. We swap complaints, discuss side effects and agree to get together after she's recovered from this last round. Before I leave, she takes me into the bathroom and shows me her reconstructed breasts. She still has expanders in and no nipples, but the girls look damn good.

From there I go to meet a group of women who call themselves "Slate Mates," (I am not making this up). They are all breast cancer survivors or BRCA gene carriers who removed their breasts prophylactically and used Dr. Slate for their reconstruction. If you're going to have expanders and implants, he's the man. Period. I had called another non-pregnant breast cancer patient, also named Katy (I'll call them Katy 1 and Katy 2), when I learned that she also needed radiation and was using Dr. Slate. She told me to come meet the Slate Mates who were lunching at Urth Caffe while I was hydrating. When I get to Urth Caffe, Katy 1 informs me that I just missed the big outing to the bathroom to check out everyone's boobs but she offers to show me hers. I pass and tell her we'll make a later date for a viewing. Katy 1 finished chemo 3 months ago and had just finished her last round of radiation earlier that morning. She is elated and beautiful and dawning her newly sprouted hair. It's come back gray (she's the second person I know whose hair came back sans color). I tell her that her hair looks amazing (it does) and my friend who was with me tells her that women would pay a lot of money for her hair cut. "I paid a lot of money for this hair cut," Katy 1 says. While I have never wanted short hair because I don't think I have the face for it - now I can't wait. I'm so envious and ready for my boy hair! I'm not even finished with my second cycle of chemo until the end of May so I have a long time to go. Boo.

I have my blood draw and appointment with Dr. McAndrew a few days later. While waiting at Tower, I see a partner I used to work with at my law firm. I go to say hello. He has the most amazing talent for remembering people. I think he's a little thrown off by my new look though so I give him my name. He introduces me to his wife who is receiving treatment and tells her that I was a "promising young lawyer who left the law to go into real estate with her family." "The Fiedlers," he says several times. His wife looks at me and says that surely I'm not here for treatment because I'm way too young. I agree, but sadly tell her I am being treated for breast cancer. And I'm pregnant. "Well," she says, "I had breast cancer when I was 39. I've never had it again. They can cure breast cancer. I've had other cancers since then, but never breast cancer." She's probably in her 60s or 70s now and was most recently treated for lung cancer and sarcoma. I don't want to tell her that I'm pretty sure her "other" cancers were breast cancer recurrences since breast cancer doesn't come back in the breasts. It prefers to come back in deadly places like the lungs, brain, bones and liver. But...she's alive so what do I know. She's in great spirits and looks wonderful, especially considering that she has a ton of hair and was apparently bald 3 months earlier. A random man waiting in the room interrupts our conversation to tell me that his wife was treated for cervical cancer while pregnant with their now perfectly healthy 34 year old son. And she's still alive, too.

After waiting an hour (patiently), I see Dr. McAndrew. We go through all of my side effects and she tells me again how pleased she is with how well I'm tolerating treatment. I know it could be much worse. I show her my latest and greatest issue which is dark patches of extremely dry skin on the protrusion points in my feet, ankles and right knee. "That's very rare," she says. I swear she said that (Cass was there and she can testify). Of course. Apparently it will go away after treatment, although the patches may remain discolored for years. Good times. Then Dr. McAndrew leans her head back in her chair and waits for me to begin the onslaught of questions. I do. I have a ton of questions about my next cycle of chemo. I've been speaking to women about their side effects and am terrified. First, they've all gained weight. A lot of it. One woman gained 20 pounds. It's apparently from a steroid they give you to boost your white blood counts. Dr. McAndrew gives me a look that kindof says, "really, you're pregnant with stage III cancer and worried about gaining weight?" but goes on to explain why the steroid is necessary (incredibly high risk of infection otherwise). And yes, I'm pregnant with stage III breast cancer and am afraid of gaining weight. I mean, if I'm going to have cancer and be on chemo when I'm not pregnant, then I'd like to wither away to an emaciated 90 pounds. You know, I could be small the way Boris defines it. Gaining weight postpartum is just fucking rude. I ask her how on earth the plastic surgeons will know where to put my new, small boobs if I'm twice my normal size. I also asked Dr. Dao during my last acupuncture treatment if he'll be able to help with weight gain and other side effects after I deliver. He tells me that I'm a really good planner but goes on to say that he used to plan and now he prefers to "live in the moment and cherish every precious moment of life." I asked him if he's ever gone through chemo. He hasn't. "I was just wondering if you cherished your time being hooked up to an i.v. for 5 hours having poison dripped in to your body." That was the end of our conversation.

Back to Dr. McAndrew: Second, they've all experienced neuropathy. Dr. McAndrew says that I will almost certainly experience neuropathy in my hands and feet. The level of pain and duration differs for everyone. Some people experience it for years. Lastly, they've all experienced excruciating bone pain. One woman described it as horrific pain coursing through your veins and bones. Nice. Dr. McAndrew explains that that's also a result of the steroid but again tells me it's necessary. Normally I'd say shoot me, but since I'm doing all of this to stay alive, that seems inappropriate. Instead, I just tell her I'm so sad and afraid.

Our meeting isn't all bad news. We discuss Miracle Warrior and how miraculous he is. In my most recent appointment with Dr. Silverman, Dr. Silverman confirmed that his growth leaves nothing to worry about. Everything looks perfect. So perfect that I don't have to go back for another ultrasound for 6 weeks (not that I don't love seeing Miracle as often as possible, but it means Dr. Silverman truly isn't worried). Plus, I see Dr. Ottavi almost every 2 weeks, so I get to check up on him in the interim. We discuss my birth. My last round of this cycle of chemo is scheduled for December 30. I will be 32 weeks pregnant. I have to wait at least 4 weeks before delivering to ensure that my white blood count, and Miracle Warrior's, are normal. I tell Dr. McAndrew that I really don't want to deliver at 36 weeks and ask if I'm putting my life at risk by waiting another week. She doesn't think so. I'm going to try to push it back to 38 weeks the next time I meet with her. How much difference can 1 week make for me? She tells me that I'll have to wait 2 weeks after giving birth before starting the second cycle of chemo. 2 weeks. That's it. That's fucking it. While I start to tear up, she gives me news that makes me cry for the next few days. She says that I can breastfeed Miracle Warrior during those 2 weeks. She assures me that the chemo will be out of my system long before I deliver (and I confirm this with a doctor who literally wrote the book on drugs and breastfeeding). I am elated with the unexpected news and cry every time I think about it.

I leave Tower feeling really happy and positive. My baby is healthy, I can breastfeed him for 2 whole weeks and for the most part, I feel okay (under the circumstances). A good friend and my Aunt both tell me that they're going to be raising money for breast cancer and want to know if there's an organization I would like them to support. I go online to look for organizations that specifically provide money for research on triple negative breast cancer. I don't feel so happy and positive anymore. The only organizations I can find were created in honor of young women who died tragically young. All of the articles I read discuss how women with triple negative tumors are far more likely to die from the disease and have recurrences. Not that this news is new, but fuck. I become hysterical. I show Boris the website for the Triple Negative Breast Cancer Foundation and the picture of the 37 year old mother of a 2 year old who died 2 years after being diagnosed. "You are not going to be her," he tells me. "How do you know?" I ask him. "I know. I know. And it's what I have to believe. You are not going to be her," he repeats. He also says that foundations aren't interesting unless someone has died and insists that I stop looking online because I'm not going to find anything good. I do, but still cry myself to sleep.

Thankfully, I have breakfast with the 2 Katys in the morning. Katy 1 has finished treatment and Katy 2 has finished chemo and is about to start radiation shortly. It's like we've been good friends forever and we'd be friends even without cancer (although that certainly creates an instant bond). For fun (in our world), we exchange driver's licenses and can't believe how different (and younger) we all look pre-cancer. We compare scars from our surgeries and our ports. I tell them that I'm so tired and my mouth sores are the worst thing ever but then correct myself to say they just suck. Katy 1 insists that they are really are the worst thing ever. Actually, she says that every side effect is the worst thing ever. She's so my people. They look at me in shock when I tell them I haven't thrown up once and can't believe I can make it to pilates twice a week. "I'm exhausted just from walking up the stairs to the restaurant," Katy 2 says. She goes on to say that she just can't take it anymore. "Sharon, I'm sorry to say this in front of you because you still have so much treatment left, but I can't take it. I'm having a breakdown. Honestly, I just can't take it. Aren't you afraid of a recurrence?" she asks. "I can't go through this again." I am terrified of a recurrence and don't understand how can I possibly be monitored closely enough. Plus, I have zero control over the situation which I hate. Katy 1 tells us both that we can go through this again should we have to. "What choice do we have?" she says. "Look how strong we are," she continues. The time flies by and before I know it, we all have to leave for various doctor's appointments. We were all invited to the Bosom Buddies breakfast at Neimans and will see each other there in a few days.

I pull up to Neimans at 9am. The store isn't even open yet but there's a volunteer at the entrance who asks me if I'm here for the breakfast. I am. She tells me where Mariposa is but I'm already heading towards the escalator (as if I don't know where Mariposa is!). I see Katy 2 right away and she introduces me to 2 other breast cancer survivors - 1 who has been cancer free for 2 years and 1 who has 2 more rounds of radiation left and then she's done with treatment. Her name is Lucy and she also used Dr. Slate for her reconstruction. I'll have to see her tatas later, but she looks amazing. As we head towards a table, I hear a few women whispering "oh my god she's pregnant," as I walk by. It's really nice to be pitied even by women who have cancer. I ignore them and Lucy and I start chatting. I'm eyeing her unbelievable eyelashes and fabulous hair. She mentions that all of the eyelashes on her left eye fell out during her second to last chemo treatment. I just stare at her, confused. She tells me that she has an amazing eyelash woman who can give me the best lashes ever should mine fall out. So now I have to ask if her hair is real or not. It's not. We have the same wig maker. It's so real I can't believe it. Neither can she. She just assumed I didn't lose my hair because I was pregnant. It's hard to see how real the wig looks on your own head but on someone else, it's pretty incredible.

As we dine on popovers and eggs, Neimans' employees show us how to put on fake eyelashes and tie scarves. It's pretty amusing. And then one of the Bosom Buddies gets up to speak about the event and Tower Hematology and how lucky we all are to be in such good hands. She looks familiar to me and I realize that she was my 10th grade English teacher. I cry as she tells us that the original organizer of the event lost her battle to cancer a year ago. I approach her later and she looks at me and says "please tell me I'm not seeing one of my students here." "You are," I tell her. She's an 8 year breast cancer survivor and it's really nice reconnecting with her. We have been in touch since and she's going to be my Bosom Buddy. In her email to me she wrote "You have probably heard this sentiment, but it is worth repeating. As a friend and breast cancer survivor said to me when I was first diagnosed, this is a club none of us ever wanted to join, but it is truly an amazing sisterhood. I'm sorry you ever had to join, and especially so young, but you have many "sisters" who are here for you." I cry.

I have 3 more days before round 5 of chemo. My last appointment of the week is with a new lymphedema specialist (who my English teacher also sees). My left arm isn't visibly swollen, but it feels heavy and I can tell there's some swelling. The physical therapy office is in the south bay which is a schlep. The specialist is warm and motherly and quickly gets down to business. She measures both of my arms and tells me that there's a 1/2 inch difference in size in a few places in my upper arm. Great. She tells me that the compression garment (sleeve) I've been wearing is insufficient and orders me a new one. I tell her I rarely wear my sleeve because I thought it was better not to restrict the flow of any fluid. Wrong. If there's any difference in size, she says the sleeve is a must. "Will I have to wear it for the rest of my life?" I ask. "Why? Is it uncomfortable?" she wants to know. It's not uncomfortable, it's just ugly and who would want to wear it forever? She doesn't tell me I won't have to wear it forever. She just says we should concentrate on minimizing the swelling.

She begins a 45 minute "drainage massage" that's relaxing, but not really a massage. The lymph nodes are just under the skin, so the pressure is virtually non-existent. I ask her if I can still get normal massages (which I love). I can't. Fuck. Is there anything I can do? I tell her that I normally walk on the treadmill and do power yoga for exercise. She says "well you can definitely walk as long as you don't work up a sweat, and yoga is great because it's stretching and breathing." Who takes a leisure walk on a treadmill? And I explain to her that I don't breath and stretch in yoga, I sweat my ass off and do 100 push ups. "Oh no. That's not something we recommend." Fuck. I've taken a yoga class before where all we did was breath and stretch and it wasn't relaxing. It was frustrating and annoying and I was crawling out of my skin wondering when we were going to actually do something. I ask her if she's aware that women should do cardiovascular exercise to prevent cancer. Do I have to chose between cancer and looking like the elephant woman? I might.

She teaches me a self massage that I really can't imagine does anything, but I'm to do it twice a day (and I have been doing it religiously, but see no difference whatsoever). And, she also is ordering me a nighttime sleeve that looks like an oversized oven mit that goes from my knuckles to my armpit. Just in case sleeping isn't already uncomfortable enough. That sleeve is forever, too. I'm just going to believe, regardless of what anyone tells me, that once I'm not pregnant and not on chemo and not swollen all the time, that this is going away. It has to. I can't deal with compression garments for the rest of my life (as long or short as that my be) and a life with no activity. At least the kind of activity I like.

And on that happy note I have 2 appointment free days to spend with my boys before chemo round 5.