Well there is good news, bad news and just news. The past few weeks have been excruciating for me – I felt like a 15 year old girl waiting by the phone for my boyfriend to call. And he didn’t call. The lab handling the samples for the clinical trial got delayed and stopped returning calls, so the clinical trial nurses here stopped returning my calls and I got a little insane. But after tracking down the head of the clinical trial in Boston I did find out the lab was finally finishing their tests (a mere 3 weeks behind) and I would get everything in by late Friday pacific time. Again this was just a test to confirm I have the type of cancer that the other biopsy showed I had back in July. So they put me on the schedule to start Tuesday (tomorrow) and told me to call Monday to find out what group I was in. Relief finally we were making progress!
Quick side note – my port WHICH I HATE – and has caused me pain ever since it was installed and repositioned back in late June stopped working. Yep all summer I’ve dealt with this thing in my chest and I go in for lab work and nothing. They tried everything to get it to work and eventually decided it needed to come out. So now I have a new port (fingers crossed it works tomorrow) and I got to have an extra surgery last week – woohoo! that was fun! and now I’ll have matching scars on both sides just under my collarbone. Taking ideas now for what type of tattoos I should get to incorporate the scars.
So healing from port surgery and feeling pretty good, I called today to find out which group I was in – the good clinical trial group or the standard of care chemo group. I was put on a hold for a bit then got the news – “well your test came back negative.” Umm what?? Yes this test showed that I did NOT have HER2 positive cancer. Umm what?? Drum roll…and “You’re not eligible for the clinical trial.” Mic drop.
It gets even weirder. Since my earlier biopsy showed I did have HER2 positive cancer, which is much more aggressive than the usual hormone positive cancer (which I also have), they STILL HAVE TO TREAT ME AS IF I AM POSITIVE! I won’t lie hearing that I wasn’t eligible for the clinical trial was a blow – I had pulled out all the stops pursuing that all summer. The other bad news is I basically get the same standard of care treatment as if I was in the bad group in the trial – taxol (a low level chemo) once a week for 12 weeks along with Herceptin (for HER2 positive cancer) every 3 weeks for A YEAR.
BUT before I scream and cry there is a massive silver lining to this story. My overall prognosis just got BETTER! Although “this never happens” and my breast surgeon “has never seen this” my oncologist thinks my cancer is not heterogenous so that parts of it may be HER2 positive and other parts are just hormone positive; so I have less of the aggressive breast cancer than we originally thought. If my earlier biopsy had been negative I wouldn’t even need chemo – but I have to trust the earlier biopsy and know that I am doing everything I can to beat this sucker. And since I’m not in the trial I’ll be able to try other alternative therapies along with the chemo like herbal supplements, etc. THAT will be a huge bonus.
So tomorrow is the day. The hardest part will surely be using cold caps which I’m doing in an effort to preserve my hair. What are cold caps you ask? Here you go…
The photo is not me and I definitely won’t be wearing a tank top since I’ll be freezing my butt off!! but that’s the look I’ll be enjoying in the chemo room. Pretty sexy, huh?! It’s important to me to try and keep my hair and not look so sick, and REALLY IMPORTANT to my kids who are very worried about me losing my hair. I know it’s silly and temporary but it’s so hard for kids to process that and they don’t want to see their mom looking like death. So I will try and place -30 degrees celsius caps on my head for several hours every week for 12 weeks and hope it works. Seriously that will be harder than the actual infusion itself! And if I bail I’ll find a cool purple wig or baseball cap with a fake ponytail to wear for the next 3 months.
Thanks again to everyone who has done so much for my mental health these past few weeks it’s been crazy not knowing what was happening. Now I have a path forward – it’s not the one I would have chosen – but hey it’s a path so I better get on it!