A couple of weeks ago, my oncologist sent my tumor sample off to have the Oncotype tested. If you recall from previous posts, she expected it to come back a fairly high number since my Estrogen and Progesterone scores were on the lower end (as is typical in that situation), which would mean I’d need 4 rounds of chemo. But we had to wait to find out for sure. She sent the sample off on a Wednesday and told me she would call with the results in two weeks.
Finally, after two full weeks of waiting, Wednesday came. I waited all day for that phone call. After being diagnosed over 3 months ago, Wednesday (yesterday) was supposed to be the day I would finally find out whether or not I’d need chemo. My oncologist had told me to prepare for it. She knew I’d need it. She sent me to the REACH center to start the egg retrieval process knowing the effects chemo can have on the female reproductive system (although, this will not have been done in vain because, no matter the outcome of chemo, I am still staring at 5 years worth of Tamoxifen that can also affect my fertility). She even had me penciled in to start chemo on August 15. I got my eyebrows micro-bladed! We were ready.
However (you should know by now that there is always a however), when she finally called, she told me that the Oncotype came back at 14%. I thought this would be a good thing (no chemo!!), but she said it was “disarming” and that she’d considered sending off another tumor (there were 6 to choose from) to be completely retested. From the start! But she said they were all identical under a microscope, so she didn’t think another one would come back any differently than the first.
So, she is referring me to either Duke or UNC Chapel Hill (which ever can get me in sooner) to have a team of experts look over all of my pathology reports and get a second opinion on what treatment plan they recommend. She said I should be able to get in to see them fairly quickly and that I should have an answer immediately since I won’t (shouldn’t) have to wait on any more test results (because they’ve already tested the shit out of my cancer and any normal person would have a treatment plan in place by now).
If you, like me, were naive enough to think this couldn’t possibly have been drawn out any longer, I’m sorry. We were wrong.
But the good news is my chances of not needing chemo seem to have done a complete 180! GREAT! But can someone just tell me one way or the other?! This is literally a yes or no question. And it is a question that will (or won’t) affect my livelihood for the next 4 months. GET YOUR SHIT TOGETHER NOVANT HEALTH!!
I can’t help but feel like I’m being pranked, and I am OVER it. I didn’t ask for any of this, and I think I’ve done a fairly decent job of taking it all in stride so far. But right now, I’m tired. Tired of “laughing it off” and keeping up a “positive attitude” about it. Tired of “cancer” being stuck on replay in the back of my mind 24/7. Tired of it dominating all my conversations. Tired of not having the energy, or the time, or the muscle(!!) to do the things I want OR the things I need to do. They took my boobs. One of the main characteristics that define me as a woman. They have chewed me up (literally), spit me back out and left me on the side of the road questioning everything. And I am pissed. I’m not afraid to say it. Yes, I’ll get over it and make jokes about this later (maybe), but this shit is just absolutely ridiculous.
I know how lucky I am that we caught it this early, and lots of people have it much worse than I do (as people like to remind me on occasion), but I can’t help but wonder what life would be like if it had progressed just a little bit further before they caught it, because then maybe we wouldn’t have all these questions. I’d have a plan in place, and I wouldn’t have been strung along for months at this point. I wouldn’t be stuck in this limbo of figuring out whether or not chemo will do more harm than good. I wouldn’t always be wondering if I (and my doctors) had done everything I could to keep the cancer from returning (I am only 30, after all).
How crazy am I that I am actually wishing it had been worse?! I realize how insane that sounds, and I hate to speak for those who do have it worse because I know nothing about that, but I almost think the not knowing is worse. All of the promises of “this next test is going to tell us what we need to know” and waiting and waiting for it to come through only to have it fail at the last minute, over and over again, is taking a toll on my soul. How do you trust a system like this? How many times are you supposed to endure it before you give up on it completely? Today is the first (and probably the last) time that I considered canceling all my doctor appointments and just moving on without any further treatment. “Winging it,” if you will. It has been over 3 months. If these doctors haven’t been able to figure out what the f@&# to do about my situation by now, what’s going to change a week from now? Or a year from now?
Days like this make it hard to stay positive. But the alternative is not an option. So, I let myself wallow for a bit, and then I sleep it off, wake up the next morning, put on my happy face and do it all over again.
Emotional roller coaster = 1, Emily = 0
I have an appointment scheduled at Duke University Hospital August 7. And they better bring it because we gone settle this once and for all!