Sorry but I needed to get that out and I'm sure there is more coming so I apologize if I offend anyone's sensibilities but I have cancer so fuck your sensibilities. As one of the nurses said to me yesterday when she heard that Nathan and I have cancer at the same time and were diagnosed 9 days apart, "This is some shit!" It is. It is beyond absurd to me.
Besides, the swearing, I am virtually speechless. "What? What? WHAT?" That's all people can say to me and that's all I can hear in my head. "What?" I only have one plan right now and that is to dive head first into denial and stay there until I can figure out my escape plan. Perhaps if I just get on a plane to South America I won't have cancer. If I can just get out of this place, I can leave it behind. It's all a big mistake. Each step of the way, they have been talking about someone else. It's not me. This is NOT my story. Fuck the plane, I need to run. Get out of my way. MOVE. I gotta run. I just have to runaway. But I can't. Sadie. Nathan. Nathan and Sadie. This can't be. This can't be their story either. There is only one option; the treatment works. I survive. I thrive. This can't be Sadie's story. There can only be one ending to this because I didn't go through a horrendous pregnancy, 39 hours of non-medicated labor and delivery, a broken vagina for 9 months post-delivery and no sleep for the past 17 months not to get to watch this beautiful child grow up, graduate, travel the world, speak six languages, win So You Think You Can Dance, solve the Middle East peace crisis, cure ALL cancer, invent an app for teleportation, find the perfect partner, have kids and grow old. I mean it is a lot of pressure but I know she can do it and I'm not watching from the nose-bleed seats in the sky. Hell no. I want to be here on terra firma. I totally believe in an afterlife, a very beautiful and well-populated one. But I'd like to have this life for many more decades before I get my passport the "other side".
I am so mad. I am so sad. I am ________. I don't know. I don't who or what I am. How can this be going on inside my body with no symptoms? Besides the lump in my breast, I'm as healthy as a horse. If someone put a gun to my head I could probably run a marathon. It would hurt but I could do it. I look and feel perfectly healthy. Okay, I could lose the 20 lbs I still haven't lost from my pregnancy but come on. My hair is longer and healthier than it's ever been. My nails are even long and manicured. It is not me.
I know I will have to get around to accepting that it is me and rather quickly so I can "fight" this but I hate that. I hate all the "you're going to fight this", "we're in this fight together" crap. Really?! What am I fighting? It's a ghost. I'm fighting a ghost. It's lurking in my body but I can't grab it by it's throat and punch it and kick it and yell it and punch it some more. It's a part of me. It's embedded itself in me. I have to trust that the drugs and the poison they're going to put in me knows how to fight a ghost.
Okay...I'm sure many of you are wondering about the practical side of things. I am pasting and copying below the notes my cousin, Rachelle, took during the consultation with my oncologist, Dr. Matthew Volm. By the way, big shout out to Dr. Volm. This man is an incredible healer and teacher. I am so thankful to be in his care. However, since the news went from bad to worse, I am going to take the advice I gave to Nathan and would give to anyone else and I'm getting a second opinion at Memorial Sloan-Kettering. I told Dr. Volm that I would be seeking a second opinion at MSK. He not only said that was it was the right thing to do but he gave me the names of a couple of doctors he knows and respects there. He also said that if I preferred to get my treatment at NYU but MSK was conducting some study that I wanted to be a part of he would partner with them so I could do both. He had no ego about it and even offered to put in a call Monday if I was having a hard time getting an appointment quickly at MSK.
Volm wants to start me on chemo immediately. I am scheduled to have a mediport like Nathan's implanted early Thursday morning and then have my first treatment that day. They will be pairing my chemo with a drug called Herceptin. My cancer is HER2-positive. Actually, that is part of the good news. I'm sorry. I was dwelling on the negative earlier but there are a lot of bright spots in this diagnosis and prognosis. HER2+ breast cancer is the most aggressive form of cancer but now there are drugs which act as antibodies and can easily and often very successfully attack the receptors on these cancer cells. The other good news is that my lungs were clear which means my brain is clear. Hey, that gives me an idea.
I am going to buy a huge poster of the anatomy like they use in medical school and learn all the parts of my body: every organ, every bone, every vein. I'm going to thank all the parts that are in good working order every day and then I'm going to instruct them to put peer pressure on the right boob, my liver and my affected bones to get with the cool crowd. I mean all the cool organs are healthy. Don't youuuuuu want to be healthy too. Just try it. It won't hurt. Hey, I'm going to try everything at this point.
Back to the treatment. Most of it is in Rachelle's notes. I'm sure there is more to say and talk about but I'm pretty tired and going to take my morning nap. I'm regressing to a infant-like sleep schedule. For all of you who are worried about calling or emailing or texting, don't. Call, email, text, comment on the blog. Whatever. I may not be able to get back to you for awhile but I really love all the outreach. And don't forget about Nathan. He still has cancer too.
I love you all.
YU - Dr. Volm - Friday, March 4th, 2011
PET Scan: Spread to liver and bone = Stage 4
Cell Type: Her2 + (only 20% of breast cancers) - excess growth factor causes cancer cells to grow
Estrogen receptor negative
- engineered to attach to growth factor receptor
- targets Her2 cancer cells
- given with conventional chemo
- Side effects: 1% risk (very rare) heart problems - therefore need baseline echocardiogram to document current heart function and follow-ups throughout course of treatment
Chemo: Taxol & Carboplatin
- Side effects: Hair loss (mainly scalp), mild nausea, decreased WBCs and therefore decreased immune system and increased risk of infection, peripheral neuropathy (tingling in hands and feet), periods will stop, hot flashes, fatigue
- Place Powerport next Thursday 3/10
- Start chemo: Taxol/Carboplatin - given weekly
- Start Herceptin - given weekly with chemo
- Echocardiogram to establish baseline heart function
- Repeat PET scan in 3 months to assess response to treatment
- Need good thermometer in the house (temp > 100.4 F call Dr. anytime)
- Disability: Dr. V will support and provide all necessary medical documentation
- Heart scan (Echocardiogram) will be done initially and then every 3 months while on Herceptin
- 75% response rate to Herceptin in patients with Her2+ breast CA
- Modalities to increase WBCs if drop too low: Neupogen, etc...
- It is Neutrophils that are decreased therefore infection would most likely come from self so: wash hands, wash fresh fruits/veggies, etc. No salads or uncooked produce at restaurants - stick to cooked veggies while out.
- Sick contacts should not cause illness - no need to worry about Sadie in daycare spreading germs
- Surgery no longer a role - may consider down the road if good response to chemo
- BRCA testing - no emergent testing necessary - may help Sadie in future
- Long term - lifetime treatment with Herceptin
- Expect chemo for at least one year but likely more
- Expect to spend 1/2 a day getting chemo once a week at first and then taper to 3 weeks on/1 week off, etc...
- Will see Dr. V once a week at first while he carefully monitors progress
- Can use tea-tree oil for nails to keep them moistened and strong
Oncologist: Dr. Volm - Hours: T/Th/F
Nurse Practitioner: Peggy
Next appointment: 3/10/11 Thursday - NYU
*Early am Mediport placement - Will receive a call the night before with scheduled time but expect 7:30 in Tisch building (33rd and 1st Ave)
*Start Chemo and Herceptin same day