Bliss Beats Cancer: I Am a Big Cry Baby

January 4, 2014

The big news today is that my lymph nodes are clear. They removed five yesterday, I thought they were only removing one, but I guess with the blue dye thing it lights up the sentinel nodes and if you have multiple that light up they take out multiple. Anyway, they were all clear which means the cancer hasn’t spread. Which also means unless something crazy pops up, the Stage 2 diagnosis is still accurate (bc of the size and dynamic cancer cells). I feel a lot more optimistic and calm today. *Deep breath*.

For those who like to know the details about this journey, let me explain how we ended up in surprise surgery on Friday. (happy early bday to me, I guess!) We went into our scheduled surgical appointment on Thursday and were informed that we were scheduled for surgery the next day. Apparently getting on a surgeon’s calendar when it’s not emergency surgery is a small miracle and so we got “squeezed in” once I informed the oncologist and surgeon earlier this week that I was doing surgery first and chemo second. This may have been a blessing in disguise bc I cannot put into words how much I panicked over the next 19 hours or so leading up the surgery. It was bad. I cried a lot. I was not functional. So if I had received more advanced warning, perhaps that panic would have been prolonged. Who knows. Anyway, so we had the lymph node surgery yesterday, and I will talk more about that below, and then my big surgery is scheduled for January 23^rd. Based on that timing, chemo will be scheduled to start probably beginning the second week of February. I wonder if there is a special Valentines dinner venue for bald cancer patients? (Ugh, I am so sad to lose my hair, but even more so to lose my eyebrows and eyelashes, you guys are going to hear a lot of worry and complaining about that, apologies in advance.)

Our check in time for the lymph node surgery was 7 AM so I woke up about 6:15 and started crying right away and didn’t stop for about 2 ½ hours until I was wheeled into radiology and the radiology tech was incredibly kind and calmed me down. It was weird too because no one else in surgery check in seemed scared or upset. I felt really stupid and immature and embarrassed but I could not stop. I was scared shitless of getting anesthesia, which I have never had, but also of the outcome of the surgery. What was I going to do if the cancer had spread? Anyway, I can’t even describe it but I was STRESSED OUT AND SCARED. So much so that I swear I was the “special case” in surgery that day. EVERYONE stopped by to check on me and they had my sedatives ready before I went to radiology even though my surgery wasn’t for another 7 hours. My surgeon was even called in between surgeries to come talk to me. And as I said before, she totally seems like someone I would be friends with and she said she would probably be exactly like I was if she had to have surgery, she hasn’t ever had surgery before and she once had a dream she needed surgery and was terrified. It made me feel a little bit better, but still the tears flowed. So it was time for me to go to radiology and I am a crying mess being rolled through the hospital in a wheelchair and everyone is giving me those sympathetic smiles along the way and it is actually making me mad, but then I get to radiology and the tech there is like this golden goddess of compassion. She has long golden curly hair and golden brown eyes and a slight accent, maybe Persian (?) and she leans over and asks me, “Sherri, honey, what’s going on?” like we are best buds. So I weep out that I am really scared and I know I’m being ridiculous but I can’t stop. So she sits down and says “Let me tell you a story. My mom was diagnosed with stage 3 breast cancer 18 years ago. She was 70 years old. She had diabetes, heart disease, high cholesterol and was overweight. Her doctors told us they were going to let it run its course bc she wouldn’t live through surgery. But we told them NO. If she is going to die of the cancer eventually, and there is a chance she might live through surgery and then not die of cancer, we want to take that risk. (And they had to fight apparently fairly aggressively to make it happen. But they won.) So she had a mastectomy on the right side and she lived. And she lived another 11 years cancer free and then sadly died of a heart attack. But we had 11 more years with her. She got to meet my daughter. And she didn’t die of cancer. And you, Sherri, you are only stage 2 and you are in excellent health. You are going to beat this and you are going to be so proud and your kids are going to be so proud. And all you have to do is be brave enough to show up, like today. I know it’s scary but you are here. You showed up and you are doing what you need to do. You should be so proud. OK?” I responded OK, and it totally worked. I didn’t cry the rest of the day. Which was really funny, bc when I was wheeled back down to surgery they were like, OK, ready for your IV cocktail? And I was like, nah, my surgery isn’t for hours, and they were like, are you sure? And I swear they came by like every 5-10 minutes to check-in because truly I was their “special case” for the day. SO EMBARRASSING.

The other new thing we learned, which is disappointing and terrifying at the same time, is that if my tumor tests negative for HER2, then I only have one option for chemo drugs. I don’t think I wrote about this before, but with a HER2 equivocal result (which is what I have now, which is a result saying they basically don’t know whether the tumor will be receptive to Herceptin or not) I get treated as if I had a HER2+ positive result which offers two different chemo options. One is the option which has been used for a really long time and has great results which is the one Robin Roberts used but it also has the risk of causing leukemia (which happened to Robin Roberts) and it also can potentially cause heart disease. Isn’t that bullshit? We can cure your breast cancer, but you might get another worse cancer that can only be treated with bone marrow (for which I would probably have no doners bc I don’t have any full blood siblings) and it might wreck your heart. Or a second newer option which was developed at UCLA that has very similar survival results but offers a shorter cycle, and no risk of leukemia or heart disease (well other than the Herceptin risk, which is a separate medicine, and there is no getting around that.) So that seems like a no brainer – the newer version, why anyone would NOT pick that version I don’t know. BUT, if my HER2 test comes back negative, that is not an option bc it was specifically developed for HER2 positive results which used to be a really bad result. So I explicitly made the decision to do surgery first bc I want to know whether the tumor is HER2 positive or negative so I can get the RIGHT chemo treatment which might be the old school version which has way worse side effects. It totally sucks. But again, at least there are options, right? With so many cancers, there aren’t.

So I think that’s it. Leading up to the big surgery on the 23^rd, we have a bunch more appointments. We have our consult with the City of Hope on Monday, a consult with the West LA Kaiser the week of the 13^th to learn more about the flap reconstruction procedure where they reconstruct with your own tissue instead of with implants, and then a whole bunch of pre-surgery stuff. I also made an appointment to get my hair cut off. I need to find a short short style I love bc after the surgery I won’t really be able to wash my hair all that much and I would rather have short hair fall off during chemo than long. We also think it will be less stressful for the girls. I’m pretty sure the husband is going to spend some time during this period perusing Victoria Secret’s catalogues for my new, potentially bigger perkier boobs, which I suppose is his one benefit of having to go through this shit with me. And of course, I’ll try to spend as much time with the kids as possible so when I can’t they don’t think I suck.

I’ll be going back to work on the 8^th (which is a relief, I was really worried that there would be no transition period and my work/team would have to pick up the falling pieces with no guidance) but will only be working around the millions of appointments and will then go onto disability for the surgery on January 21^st. I have no idea how long I’ll be out, I imagine anywhere between 8 weeks and 6 months depending on how tough the chemo is on me. Which is also weird. I get more disability time off covered for an illness than I do for having a kid…which I’m not going to complain about, I need the time, but my thoughts on the crap that is US maternity leave could be a whole blog of its own.

I’m also keeping a list of actions I can take to make my personal experience with breast cancer have some meaning. Like, I really think there should be some education to first time moms who give birth after 35 about their increased risk which encourages them to be diligent about breast self-exams and just awareness around breast size, shape and changes. I had NO IDEA that there was an elevated breast cancer risk to me having my first kid after 35. So I need to figure out where to go with that, like how to make that a public health thing. And I have a whole list of Kaiser operational things that I am going to send to them. Ah, the benefits of treating an Ops Manager, I guess. (Hmm, there is an idea, maybe I need to be an ops manager at Kaiser for their breast cancer clinic, I would be SO good at that!) Also, I am totally doing every breast cancer walk/run I can afford to do because there is still the need for so much research. The whole chemo thing with the side effects, it pisses me off. One treatment to save your life shouldn’t cause another disease that can end your life. But when I tell people (and this is mostly men, no offense) that I have breast cancer, they are like, oh well, if you are going to get cancer that’s the one you want. NO ONE dies of breast cancer anymore. Um, fuck you. Yes they do ass-hole. And there is the need to do more because of the number of women, especially YOUNG women that it affects. I also signed up for one of Susan Love’s research studies through her Army of Women initiative. (despite the fact that her stupid cancer book is like its own little cancer with the plethora of bad news contained in those pages, I had to stop reading it bc it felt like the rest of my life I was going to be in pain and would hate my reconstructed boobs, etc)

Oh and lastly, for those wondering, I am strongly leaning toward the double mastectomy. Stupid Susan Love would call this an American epidemic of consumerism where people think more is better, and my oncologist said NO ONE medically would recommend I remove a healthy breast, but after the scare on Monday, honestly, I don’t ever want to go through that again. I think I will die from heart failure if another lump is found and I have to go through the process of having a biopsy and WAITING to find out of it’s cancer. Removing the second breast means I go from having about a 1 in 6 chance EVERY year of my life of getting breast cancer on that side to a 2% lifetime risk. I plan on living at least another 40 years and 2% TOTAL risk sounds way better to me than 17% annual risk. I’m also leaning toward implants over the flap surgery bc the flap surgery to me just sounds super invasive and gross. But we’ll see if the second plastic surgeon sells me on it.

I think that’s it. As usual, thanks for all the support, flowers, books, calls, IMs, jokes, emails, “fuck cancer” product links, “They’re fake bc the real ones tried to kill me” product links, thoughts, advice, etc. It is sort of sad to me that my network is so virtual as the vast majority of you are not physically close, but you are all totally in my heart and I appreciate you so much.

Thanks for reading.

Much love.

Sherri

ME BEFORE SURGERY (probably yelling at Chris to NOT take my pic!)