Sorry for the posting delays. After treatment 4, I really needed to focus on catching up with work rather than other things, and at first it didn't feel like I had much to say. That's changed a bit.
Backtracking to the week of treatment 4:
Kayla and Natalie came to visit, all the way from MN. I can't begin to tell you how much this cheered me up. We spent an overnight in Raleigh, stopped for some outlet shopping on the way back to Wilmington (the highlight of which was the Harry & David snacking in my car with the heat cranked up - Spring Break isn't supposed to be cold, especially not in the south!) Lots of us-time, eating, shopping, and doctor's visits were crammed into a few short days. Lots of smiles and laughter. Kayla even held my hand through the fill-up at Dr. Kays on that Monday. Too short a visit, but I loved every second of it!
I've made the decision to delay the 2nd phase of reconstruction. This isn't just because of all the flip-flopping that's been happening, but because of research. The more I do, the more I find that delaying the 2nd phase of reconstruction (swapping expanders for implants, and the bonus fat-grafting) to 5-6 months after radiation improves outcomes for both. Even a book chapter coauthored by Dr. Kays' mentor elaborates on this common practice (See Chapter 49: Reconstruction of the Irradiated Breast here:
http://www.drscottspear.com/plastic-surgery-publications-washington-dc/).
The next year should look something like this:
Chemo #6 - April 30, with about 3-4 weeks recovery. I'm hoping to take the entire month of May to bounce back & prepare for radiation.
Radiation - June through Mid-July. Every weekday for 6 weeks (30 treatments).
Tamoxifen - This drug is a targeted therapy that will block estrogen in my system to help prevent reoccurrence of the cancer. I'll start this the day after I complete radiation, and take it daily for 10yrs. It has a host of "fun" side-effects, but I'll deal with that later. Enough is enough right now, ya know!
Laprascopic, Supra-Cervical Hysterectomy - Hopefully in the fall (late September or early October, with a short recovery time).
Reconstruction, 2nd phase - early December, which puts me at 5 months between radiation and surgery. Hopefully that's enough time for the skin and wound sites to heal really well, so that surgery goes off without complications. Nipple (and possibly scar) tattooing to follow as soon as I've recovered.
I think this schedule seems reasonable, and allows for a decent amount of recovery time in between phases, which I'll need. I drastically underestimated the exhaustion, pain and downtime I'd need at the outset of chemo. I'm looking forward to the fact that each of these future treatments and surgery should pale in comparison to what I've been through in the past few months. Of course, there will be a number of regularly scheduled follow-ups with each doctor on the team as I move forward.
Ok,
back to treatment 4. Dr. Kotz reviewed all of my side effects and recommended that I decrease the dosing for my chemo. He explained that dosing is crude, in general, just based on a height/weight combo and doesn't account for how an individuals body processed the toxins. Also, studies show that getting the full 6 rounds does more good than getting only 4 of this particular protocol. Delays or missed treatments due to side effects would do more harm than just decreasing the amount in each of treatments 4-6. We made the decision to cut treatment 4's dose back by nearly 20% (though I thought it was closer to 10% at the time). Between the lower dose and not having pneumonia, my body handled round 4 much better. I was still tired, but not completely knocked out for 10 days like I'd been before. I only experienced 1 day of tummy troubles. Food and drink were still an issue, and I actually experienced some sudden nausea here and there, but truly not bad as compared to treatments 2 & 3, which were awful. The bone pain from the Neulasta was a bit worse, but Dr. Kotz said that could happen as a result of having less of the chemo in my system. The worst part was joint pain, we think from the Taxotere. I was knocked to the floor on more than one occasion from shooting pains in my hips and knees, and we even had to call Mom & Bob for backup help to get me up, comfortable and keep Charlotte distracted. The joint pain has persisted throughout, in my hips, knees, ankles and even across the tops of my feet. There seems to be less of it by day 18, but it never really goes away. Dr. Kotz is slightly concerned that this effect may outlast the treatments. I'm going to deal with what comes at this point. I have enough on my mind just getting through right now.
At one point, I was very concerned about all the pain, and started doing some research, which eventually led me to research another topic, which led to some of my hesitation in posting after treatment 4. I wanted to confirm what I'd found before sharing. So, I started looking up search terms like "joint pain" & "chemo" and found a lovely, but uncommon condition called AVN (
). It's a form of vascular necrosis that occurs when blood flow is decreased or cut off from the bones, and can be caused by the chemo regimen I'm on. I don't know which was worse, knowing that my regimen could cause this lovely condition or the use of the term "uncommon" because we all know my track record with being in those small percentages.... Anyway, the good news there is that Dr. Kotz doesn't suspect it at all. He truly believes my pain is from the Taxotere. We focused a lot of our conversation at treatment 5 around managing pain. I'll get back to that though. I started doing more research because I have a hard time visualizing measurements. I had a 5.5cm tumor, and centimeters seem so small to me, yet everyone keeps talking about how big that is for a breast tumor. I needed a visual, and I found one that made it all make sense, one that won't leave my mind because I find it extraordinarily hard to believe that this was in my body: a tumor somewhat larger than a lime. Here it is folks, see for yourself:
http://www.mayoclinic.org/diseases-conditions/breast-cancer/multimedia/tumor-size/img-20006260 I particularly enjoy the last sentence on that link from the Mayo Clinic where it reinforces my connection to the rare. I'm such an oddball, because "Sometimes tumors larger than 5cm can be found in the breast." Yeah...sometimes...
So, I continued my search for information, partially out of curiosity and partially because people have asked and I have no idea how to respond to the specific question: "What's my prognosis?" Dr. Kotz has been great to talk about reducing recurrence rates, but he's never mentioned any stats to me about my actual prognosis. Well, I didn't like what I found, and I was hesitant to write about it or share it with friends and family until it was confirmed. But here it is: Based on factors like age, tumor size, node involvement, grading, and Oncatype, I have at best, a 63% 5-year survivability rate. That means there is a 63% chance I will be alive in 5 years. Nothing like a definite number that is shockingly low to shake you up a bit. Though, I guess it's better than 50/50. These numbers are based on large studies (more than 20,000 patients followed for more than a 5 year period), and other reasons for death that are faced by the general population were already factored out (like car accidents, other unrelated illness, etc). The survivability numbers drop significantly due to the tumor size (funny how searching more on tumor size led me here) and being young doesn't help here either, as cancer tends to be more aggressive in young women. Anyway, when I brought these stats to Dr. Kotz, he agreed, but he also reassured me that I've made smart, aggressive choices about my treatment and I'm doing everything I can to make sure I'm in that 63%. And I will be. That is all! Treatment decisions,
faith,
family & lifestyle changes. That's how I know I WILL be alive in 5 years.
For treatment #5, we left the Taxotere dropped back by the nearly 20%, same as last time, but increased the Cytoxan and Adriamycin to about a 10% reduction, as it seems I handle them better. It's time to get through these recovery weeks and then I can focus on the fact that I have only one more of these to go. In the meantime, I need to keep focused on catching up on grading so my students don't revolt. I hate feeling like I'm less than my best when it comes to teaching. OK, with my type-A personality, let's face it - I hate feeling less than my best at anything, but cancer is humbling in that way and I'm learning to cope. The month ahead is going to be super busy, between events like Relay for Life & St. Baldrick's Shave for Sean, birthdays, holidays, school events for Charlotte and Kindergarten registration(!), recovery and work. I'd love your prayers and warm wishes for an easy and fast recovery period!
I've been getting so much love and warm wishes from friends, colleagues and church family. Please know your cards, notes, Facebook messages are all received and I love them. They really do cheer me up on the low days! Thanks all!
