Well, I hope that those of you who are on this journey with me are prepared. It’s time to buckle up your seat belts and settle in for a long flight.
First, some good news: I GOT MY DRAINS OUT! I never thought I’d see the day!! And I am so. Freaking. Happy. Life is so much better without them. And since the implants are behind muscle, I have been cleared to start stretching my arms back up above my head to stretch the muscle out (hello, you two new, beautiful, entry-level boobs—they still need a bit of work—these future CEOs will never sag again!). I am finally able to get dressed and shower all by myself!! I’m slowly gaining back my independence and it feels wonderful!
But now it’s time for my weekly dose of frustration. I know, shocking. (But, not really.)
I had my oncologist appointment today where I was previously told I would get the answers I need (finally. FINALLY!) to move forward with treatment. However, my HER2 results came back “equivocal” when they tested it in pathology. And apparently North Carolina doesn’t have the technology to test further, so it had to be sent off to California. My sample was then LOST IN THE F’ING MAIL, sent BACK to North Carolina without being tested, and then sent BACK to California. The lab had only received my sample on Tuesday of this week. (I mean, not to sound like a first-world asshole, but have these people never heard of overnight shipping?!)
And my oncologist, Dr. Brownlee, had been on the phone with said lab for 20 minutes prior to my appointment trying to get answers from them. She was pretty pissed about it too, so it actually made me feel a little better. And like her a lot more.
Anyway, if this sounds confusing, I’m going to try my best to explain it as I understand it.
HER2 is not a hormone as I may have said in previous posts. It is a protein that is pretty important when it comes to feeding cancer growths. Most times, when it is being tested in pathology, it comes out as either positive or negative. But sometimes, it shows up as “equivocal” and it must undergo more detailed testing.
So, now that my sample has made it to the correct lab and they’ve gotten that fire lit under their asses from Dr. Brownlee to get with the program, they will be able to tell me whether or not it is positive or negative on Wednesday. Next f’ing week.
If the result is positive: I have a choice between two different types of chemo. And Dr. Brownlee and I will have to discuss which one further if/when we cross this bridge. The first choice is a chemo drug called Taxol mixed with Herceptin (which fights the HER2 protein). I will get a round of that once a week for 12 weeks followed by a round of Herceptin once every 3 weeks to complete one year. This is supposed to be a “lighter” version of chemo. Easier to handle physically, but I will still lose my hair.
The second choice is with a chemo drug called Taxotere mixed with Carboplain and Herceptin given once every 3 weeks for four rounds. This would be followed by a round of Herceptin once every three weeks to complete a year. This type of chemo is more aggressive, and I will lose my hair with this version as well.
If HER2 comes back negative, it will have to be further tested for an Oncotype. If this oncotype comes back below the 16-18 percentage range, I will NOT need chemo. (Yay!!!)
However, if it comes back any higher than that, I will have to have chemo. This one being Taxotere mixed with Lyxotan once every 3 weeks for four rounds. And I will lose my hair with this as well.
And, to give you an idea, Dr. Brownlee said that usually in patients where their ER/PR scores are a lower percentage (mine were 21 and 22% respectively), the Oncotype is usually higher. So, she told me she is pretty sure that I’ll need chemo in one form or another.
So, basically there are 4 scenarios that can happen. And only one in which I will not lose my hair. So, I’m happy to have this info because I am now able to kind of start mentally preparing for it (as much as one can prepare for something like that).
But I’m not done yet. Most of you, hopefully, know that before this cancer diagnosis, I was kind of indifferent about wanting kids. I knew I did NOT want to be a single mom, but if I were to meet and marry an awesome guy and he wanted to have kids, I was going to happily give him one. Or two. But if that didn’t happen, I was going to be okay with that as well.
And since this diagnosis, one thing I haven’t been super forthcoming about in these blogs is the fact that my fertility has now become a big deal. Not just to me but to my doctors and seemingly everyone around me. Since hormones produced by the female body are what literally feed my cancer, my body is stuck in this vicious cycle of trying to kill me.
So, now all of this is essentially being thrown in my face and my just “letting it happen if it happens” philosophy has been thrown out the window. If I absolutely did not want kids, I would be fine. I could take all the drugs that suppress these hormones, go into menopause or have a hysterectomy and be fine. And since most women who go through this are older and have already done their damage to society by birthing children (I’m joking, please don’t hate me for saying that), it is not usually something they have to deal with. But the threat of having it all taken away against my will has forced me to admit that I really do want children. Or at least a child, one day.
And here’s where the problem begins. (Lol, did you think it was coming to an end anytime soon?!) Chemo can have an affect on fertility later on down the road. And taking estrogen-suppressing drugs can have an effect on fertility later on down the road. And getting pregnant on any of these drugs is very dangerous. But my only way forward is to take these drugs. Because getting pregnant and the high dose of hormones rushing through your body at any given moment during pregnancy has now become very dangerous for me. It will increase my likelihood of recurrence by a pretty decent amount. Which is very dangerous, according to my oncologist, because it usually comes back with a vengeance.
So, I am being referred to the REACH center in Charlotte to discuss harvesting and freezing my eggs. (Assuming I’m able to afford it.)
However, freezing my eggs is only being done as a backup. My oncologist said plenty of women go on to conceive naturally after chemo. Some have trouble and some don’t. It’s a hard area to study, so it’s almost impossible to know exactly why they have trouble.
But, technology is pretty fucking amazing these days. If/when I do need chemo, they will also mix in another drug during my treatments that will essentially shut down my ovaries and “freeze” them in time. So, in the year or two that I’ll be undergoing treatment (if that’s the route I have to take), my ovaries will stop aging, and I will be able to postpone having children without upping my risks later on. Which is just really amazing to me.
In my WILDEST dreams, I never could’ve imagined I would be here. Ever. At any point in my life. Let alone at 30 years old. God better have a damn good explanation for this shit. Or at least a beautiful (and VERY understanding) man waiting on the other side of this with a ring in his pocket.
You are such a strong young woman. I am praying that all comes out in your favor.
Wow and wow! That’s a lot to take in ! My head is spinning so I know yours is. So many things to understand, so many things thrown at you, so many decisions that have to be made. I know you have to make plans for “tomorrow” but, I still believe you can do this “One Day at a Time”… if you pray about it, the answers will come. Don’t worry, I will pray for you. I will ask God to be with you when you make any decision and to clear your mind of any fears and the “what should I do’s”. I pray for every question, He will give you the answer and more importantly, you will know in your heart it’s going to be okay because He is with. Stay strong and thank you for sharing.