For anyone who didn’t watch Seinfeld, that header will be meaningless. For the rest of you, stay with me. You’ll get there.
But before I get to this week, I need to rewind because it’s been a while since my last post.
For starters, my awesome sister and her dance studio, Rhythm Dance Center (in Marietta), along with other family members and friends are hosting a family fun fundraiser “Bullseye Bash” on Saturday, March 1. This fundraiser is for the Triple Negative Breast Cancer foundation, a non-profit 501c3 organization that funds research specifically for triple negative breast cancer, the kind I have and the kind that’s been perplexing scientists for years. Progress is being made, but we desperately need drugs to specifically target this subtype and to know more about where it comes from. I’m so excited about this event and to be helping others who share my diagnosis. Want to be involved or donate? Below is a link to the event. You can donate online but I’d rather see you there on March 1! 🙂 We’ll be having a dance-a-thon where you raise pledges for one-hour blocks of time, bingo, jumpy house, crafts, snacks and more. It’s just a minimum $10 donation at the door to enjoy all the activities. I’m so excited about it and hope to see (and even meet) many of you! All donations are tax deductible too. Win-win.
Here’s the link…
Ok, so back to my last couple weeks.
On Jan. 30, Macon actually got a lot of snow (for us). Three inches, and some ice to boot. It was actually predicted (unlike Atlanta’s) so we didn’t have the chaos Atlanta had. All schools were pre-cancelled and since I’m mostly working from home lately, it didn’t impact me there either. On Thursday however, I did get my impact.
To begin the day, I had an appointment with my surgeon that morning for a follow-up, before my chemo treatment. No issues getting to the appointment at all. The best thing that came from that appointment is that he was able to confirm by ultrasound what my onc already knew. No sign of my tumor! All he found was necrotic (dead) tissue. So he confirmed that I have officially had what’s called a “complete clinical response.” So happy about that, but what we really want and need (and won’t know until after surgery) is a “complete pathological response.” That means that once my breasts are removed and the pathology report is back, it comes back completely clean. He believes that’s what I will get, so I believe that too. Believe with me!
During the appointment, I asked if there was any chance of me being a candidate for reconstruction at the same time as my mastectomy. That’s what I would prefer (it’s one less surgery, for starters). He’s undecided and said it would be a team decision/recommendation between him, my onc and the plastic surgeon. The reason not to do it is if we get a surprise on the pathology report that shows even a microscopic sign of cancer cells, I would then need radiation. You don’t want reconstruction before radiation is done. It creates all kinds of complications. So he’s talking to the others to get their feedback. More on that later in this longgggg post.
So, Brent and I leave that appointment and head across the campus to the cancer center. We were shocked to pull up to an empty parking lot. It was 1030 at this point. I walked inside, no sign on the door and it was locked. So what does that mean? No treatment today? I called the number and the message says they are closed for inclement weather? So we got back in the car and drove back home on perfectly snow- and ice-free roads, perplexed why they were closed and irritated that they hadn’t called. As it turns out, when we got home, we realized they had in fact called us…on our home phone. Why did I even give them that number? We don’t ever use it. Neither Brent nor I even know how to check messages. He finally dug out the manual and sure enough, they had called. Oh well, at least we still had the appointment with Dr. Martin. It wasn’t a wasted trip.
So Friday morning I called first thing but they couldn’t tell me if I could get my treatment because they didn’t yet know if they had my drugs on hand after two missed days of courier service. So I went to a work meeting and waited. Around lunchtime they called and said I could come in, so I finally got my treatment around 2p. For the first time ever, I even drove myself home from treatment. Full disclaimer: my mother-in-law and best friend were both with me and fully willing to take me home, but I felt fine, had my car there anyway, so I got permission from my nurse and left.
The crazier thing is as soon as I got home, I turned around and drove to Target and then out to dinner with friends. It was very surreal that I had just had chemo and was out and about. This would have never happened on AC. Just further proof that Taxol is much easier on me. I only had a day and a half of bad days. Nothing terrible, just exhaustion and flu-like feeling. I traveled for an overnight work trip Tuesday/Wednesday and felt pretty good.
On Monday (Feb 3), I got a call from one of the nurse practitioners at my oncologists office. They were concerned about my labs that had come back from Thursday, specifically my liver enzymes were very elevated. They asked me if I had been drinking alcohol (yuck…last thing I’ve had any desire for), taking excessive Tylenol or taking something herbal from the health food store. My answer to all was no, so they assume it’s because of the Taxol. So I went back in Tuesday morning for more bloodwork (it takes 24 hours to get liver test back so couldn’t wait til Thursday). They said they would likely adjust my dosage for Thursday to limit the stress to my liver. When I went in for labs they also said my BP was low (90/60) so I had to wait there for my white counts to come back just in case. But everything was fine considering.
Fast forward to Thursday (2/5)…we went in for my treatment, did more labs and waited to see the doctor. I felt very positive that I would get my treatment because I felt really good. My mom felt like I wouldn’t. When the doc came in she said that while my liver enzymes had improved (there are two enzymes they test, one was back to normal but the other one was still really high (normal is 30, mine was 137 last week…then dropped to 90 this week…better but not good)). Also, while my white count was high enough to give me chemo, my platelets were too low (must be 100 to get chemo, mine were 79).
So, you guessed it. “No soup for you!” I did not get a treatment this week. Kind of a bummer, but they said my liver is in distress and needs some time to clear out the toxins. So I’m ok with it. I was prepared this would happen at some point, so I’m rolling with it.
I don’t know what to do with myself having this break and knowing I’ll be feeling good for another week. Just pray that this break is what my body needs and I can resume this coming Thursday.
I also learned that I will be getting FOUR treatments of Carboplatin instead of three. I’m not sure why the change but it has to do with the research and protocol, not me specifically. That could mean that the April 3 date we’ve been counting down to may be pushed slightly since I missed a week. I’m not sure but I will find out this Thursday.
The last thing to report…my case has been presented to a panel of physicians for the hospital group that my doctors belong to. That occurred a while back, but my surgeon told me he was going to present it again given the success of my treatment. That happened this past Thursday. He asked for opinions on me having reconstruction at the same time as my mastectomy. The radiation oncologist on the panel said he felt that I should have radiation regardless of complete pathological response, based on my age, type of cancer, etc. He’s going to do more research but he doesn’t think I should forego radiation. I’ve known that was already a possibility, so I’m not surprised by it. It’s still not certain yet. It’s the first time I had heard of having it from a preventive standpoint rather than a necessary standpoint.
I will soon be going for a radiation consult with a different radiation oncologist than the one on the panel so we can get one more opinion on the decision. I’m not sure when a final decision will be made, but it sounds like I will most likely not be having reconstruction at the same time as my initial surgery. That’s a bummer, but I’m willing to do whatever my doctors recommend to give me the best possible prognosis.
Congratulations if you’ve made it this far into the post. Sorry for the length. Lesson learned on waiting too long between posts.
Please plan to join us on March 1 for the fundraiser!! If you have questions, let me know. Hope to see you there!