I don't mean to scare anyone with this post. I sincerely loved that after my first round I was able to post photos that showed that the experience was not scary at all, and I hoped that peace helped readers out there. But I've also vowed to tell the whole story here, and in the end, it's a good one, because it proves that the team at Dana-Farber is prepared for anything.
As I wrote about yesterday, thanks to the steroids, my morning began very early, and by the time my Mom came to pick Brian and I up at 7:30, I had written what must have been my longest post yet, elliptical-ed for 30 minutes so that I could enjoy the feeling those toxins burning out of my shedding head, cleaned my house, and helped get the kids ready for their Halloween parties at school. We all drove into Boston in great spirits and in all honesty, I was completely at peace with this second round of chemo. Ironically, about a week ago, when I told my Mom how comfortable I felt with this stage of my treatment, she joked that she didn't want to let her guard down just yet. Good thinking on her part, because yesterday we ended up needing some serious guards. And some guardian angels probably helped too.
After my IV was inserted (unfortunately, not in the most comfortable fashion which left quite the bruise on my right forearm), we headed back up to Yawkey 9. While we waited to meet with Dr. Bunnell, I went into the infusion suite to visit Maggie. Her husband, Drew, was there so I texted Brian to join us. For about 20 minutes, the suite felt more like a booth at a restaurant on a Saturday night and we all laughed about our Bowdoin connections and how we all met. Just like my gut instinct told me, Maggie is beyond wonderful and she prepared a picnic basket for me full of goodies from ginger candies to her beautiful head scarves. I was speechless at her generosity, and felt terrible that all I brought her was a Livestrong bracelet. I didn't want to leave our little party, but Maggie's alarm started beeping signaling that her Herceptin infusion was complete and at the same time, I was called into Dr. Bunnell's exam room. We hugged and said we would see each other in three weeks, the day before Thanksgiving. Sadly, it looks like now I'll be pushed to a different schedule that won't match Maggie's. So I guess that means we'll have to find a place to meet up that isn't at Dana-Farber. That'll be much more fun anyways.
My appointment with Dr. Bunnell went great. He said my counts looked excellent and although we talked for quite a while, it was really just so that we could review all of my symptoms and he could offer advice as to how I could suppress them if I needed to. At the end of the appointment, I reminded him that it was the time for him to tell me that he still thinks I will be cured. He smiled through his obligatory, Yes, I think you will be cured. I told him he's welcome to enter a note in the computer about that.
Then we headed off to wait for the infusion. We had to wait a while, and we spent most of the time in the waiting room talking to a couple just a bit older than us who have traveled from Connecticut for the last five years to receive what they consider the best-of-the-best cancer treatment. We talked about how thankful we all were for Dana-Farber; how the doctors literally save lives. Turns out the next few hours would prove that to me like never before.
It wasn't until noon that the Herceptin started to flow into my IV. It flowed just fine, and unlike the first "loading dose" which lasted an hour and a half, all of the Herceptin infusions for the next year will only be 30 minutes. Those 30 minutes went quickly, and during them I ate my chicken quesadilla from Beantown Burrito that I had been dreaming about since I finished the same lunch during Round One. When the alarm sounded that the Herceptin was done, my lovely nurse Karen came in to load up the Taxotere, the first of the two chemotherapy drugs I was set to receive. Following strict safety protocol, after one nurse sets up the bags of drugs and programs the attached computer, another nurse comes in and reviews the work to be sure that everything is correct. My understanding is that these heightened protocols came years ago after a terrible tragedy in which a patient received an incorrect and fatal dose of chemotherapy medication. My Mom and Brian and I all knew that tragic story so we are always very quiet while the second nurse checks the drugs. But oddly, yesterday we weren't quiet at that time because we had got to talking to Karen about Canton. Oddly, I remember thinking as the second nurse walked out, Gosh I hope we didn't distract her.
It turns out that Karen (who had also been my nurse last time and who has been Maggie's nurse through her whole treatment) grew up in Canton. I could picture just the house she was talking about when she described where she lived and Brian and I were laughing in delight at all of the great people that we all knew. Seriously, every time I come to Dana-Farber the world gets even smaller. But then, just a few minutes into our light-hearted conversation, something happened. In a split second, I felt my whole chest tighten. Then my throat closed and I tried to yell that I couldn't breathe. I keeled over and Brian rushed over to hold me up so that I didn't fall out of the chair. I can only remember the next half hour or so in bits and pieces although I know with the utmost clarity that it was the most terrifying experience of my life. My first thought was that the dosage must have been wrong and that I was being poisoned to death. An allergic reaction never crossed my mind because I (incorrectly) assumed that any allergic reaction to the medication would have happened on the first dose. I never thought I had gone into anaphylactic shock, but low and behold, I had.
Much of what I will describe here is based on what Brian and my Mom later described to me. Within seconds, a team of about five people rushed into the suite. Each one had a job, and apparently they didn't even need to speak to each other to know precisely what job that was. I remember a man that I had never seen before standing above me. He had positioned me seated back in the chair although I remember that I kept falling forward. The back of my head hurts today so I think perhaps he held me up by the head through some of the process. This man told me to try to keep on telling them my symptoms and for most of the time, I was able to wail them out. I can't breathe. My chest is tight. My face is going to explode. My arm hurts. My feet hurt. I can't breathe. I can't breathe. I think I'm going to die. And perhaps the words I remember saying the most, Please help me. Please help me. Please help me.
And this life-saving team did. They pumped me with huge doses of steroids, Benadryl, and I don't even know what else. When I was able to lift my head off my lap for the first time, I vaguely remember Brian and my Mom's horrified gasps. Oh my God, they said. My face had swelled to worse than Will Smith's in that scene from Hitch. My eyes were almost swollen shut and my nose was almost as wide as my mouth. Inside of me, the same swelling had happened, which is what caused my blood pressure to fall so low that Karen wouldn't even tell me afterwards how low it had gone, since I'm sure she didn't want to scare me even more than I was already scared. My airways had begun to close due to the swelling too, which is why I felt like I could barely breathe.
I remember Dr. Bunnell arriving a few minutes later. I remember him asking questions of the team that was stabilizing me. I remember Karen looking me in my swollen eyes and asking me where I was. Dana-Farber, I answered. What year is it? She asked. Nineteen, no two thousand two, no two thousand twelve, I answered. But sometimes I really do get confused about the year, so I didn't worry too much about that one. They told me afterwards that I got plenty of oxygen through the entire episode, which means no permanent damage was done. To my body and brain, anyways. I think my mind and my spirit may still have a bit of healing to do.
As I started to come around, I remember asking Dr. Bunnell if this meant that I couldn't receive the drugs I need to save me. (Actually, I think I may have asked him this several times.) He assured me that it did not. I've got lots of plans, he said. Still somewhat delirious, I joked back, Well, I've got lots of plans too so you need to make sure your plans work so that I can carry on with my plans. He laughed. I also asked Dr. Bunnell why this happened today and not in my first treatment. He said that the first dose acts as a "primer" and the second round essentially reacts with the first. I don't really get it, but clearly he does, and he's the boss.
I've dealt with a lot of fear in the last few months, but it was all fear about a distant death. This was a whole different fear -- a fear that death was actually upon me. I have never experienced anything like that before, and I pray that I never have to again. It shook me to my core, and even now as I write this, I know I haven't begun to process all of it yet. In truth, I don't even know if I should try to.
After I was stable and the cool oxygen was flowing peacefully into my nose, they covered me with blankets and told me to try to rest. Karen explained that I'd feel very strange because the large doses of infused Benadryl would make me drowsy, but the huge doses of infused steroids would make me restless. She was right -- my mind and body couldn't decide if I was ready to sleep or to run.
Dr. Bunnell explained that he needed to go make some calls to craft a new plan and that he'd be back to talk. Brian left for a few minutes to make sure the kids were doing OK, and my Mom and I pretty much just sat in silence, trying to recover from the shock of what had just happened. We joked a bit about it too, but I think we were both still shaking even as we chuckled.
When Dr. Bunnell returned, he explained our next steps. He doesn't want to change my course of treatment because that would be a bit complicated. He explained that Dana-Farber has a whole department dedicated to allergies and that my next step is to meet with an allergist who will help craft our plan. Apparently it is very difficult to get a quick appointment with an allergist since they are booked months in advance but Dr. Bunnell explained that people in my situation are bumped to the top of the list (something about the way the Herceptin needs to meet up with the chemo drugs, I think, but I wasn't really following all the details). Dr. Bunnell hopes I will be able to meet with the allergist within a few days, and be able to receive my chemotherapy as early as next week. As I write this, my ringer is on its highest setting and anyone who calls shouldn't be surprised if I answer on the first ring.
Ultimately, Dr. Bunnell plans to have the allergy team "desensitize" me to the Taxotere and get that pesky Ally into me for these last three rounds. Essentially, they will "pre-medicate" me with tons of steroids and then infuse me at an incredibly slow pace (what had been a one hour Taxotere infusion will become a five or six hour Taxotere infusion, and same with the Cytoxan, I believe). Dr. Bunnell explained that these will be very long days at Dana-Farber -- like over twelve hours -- but that's fine with me, as long as it works. He has faith that I can be desensitized and that we get get through these next three rounds without anything like today's events happening again. The "desens" team, as he calls them, will monitor me with extreme precision, and keep me safe, just like the team on Yawkey 9 did.
I felt a strange feeling of failure when I left Dana-Farber yesterday loaded up with lots of drugs but none of them chemo drugs (since I refuse to count the one or two drops of defiant Taxotere). I didn't get what I had come for, and I hated that. As I had written about a few days ago, I wanted those drugs in me to help me fight. But my Allies had other plans for the day.
I can't help but notice the irony in the fact that this week I have written about how I am too sensitive. When I first heard Dr. Bunnell use the word "desensitize," I almost laughed out loud. I wanted to ask, Can you desensitize my brain while you're at it? but I held back. I guess I am too sensitive after all, because one or two drops of additional Taxotere would have killed me if it weren't for the team of angels (both in scrubs and perhaps invisible above me) that came to my rescue. That team was gone as quickly as they arrived, and I hope I one day get the chance to thank them.
I also can't help but notice the irony in the fact that just his week I wrote about how sometimes it's harder to be the loved one of the patient than the patient. I cannot even begin to imagine what that whole episode was like for Brian and my Mom, and I think Dana-Farber should consider passing out valium to family members that had to witness something like that!
Last night as the swelling in my face slowly subsided, I joined my family at the neighborhood Halloween party and then for trick-or-treating. It was a beautiful night, and I cherished the fresh air like I never have before. Teddy ran around with his friends, still usually at the back of the pack, but he tripped a lot less this year. Annabel gathered candy at the first few houses we visited, and then spent the rest of the time walking on the side of the street eating it. When we all got back, Teddy dumped his candy pile out and he and Annabel enjoyed some healthy snacks of M&Ms, Kit-Kats, and ring pops before bed time.
Meanwhile, Brianne, Seamus, my Mom and I surfed the web for ideas for their new baby's room, and I set up a Pinterest account which has been a mystery to me for months. There's something magical about talking with Brianne and Seamus about their baby after a day like yesterday. Just like there was something magical about watching my kids run around our neighborhood last night breathing fresh fall air, without a worry in the world about what we had all been through just a few hours earlier. Those are just a few of the reasons why Dr. Bunnell's plans matter so much to me.
I won't lie, at times, yesterday feels like a huge disappointment, even a failure on my part. As I sit here without knowing the precise plan of how we'll continue to attack this thing, I feel a bit lost. But I keep trying to convince myself that it was only a bump in the road; that this team of the world's most skilled professionals will find a way to get me the drugs I need, even if my body wants to fight them on it.
Round Two certainly wasn't what I expected it to be, but then again if there's anything I have learned in the last few months, it's that life is full of surprises. I have to keep my faith that what has happened to me before will happen again -- from something that at first seems so terrible will come many things that are so wonderful. And if nothing else, What doesn't kill me makes me stronger, right? Well, those one or two drops of Taxotere definitely didn't kill me so in the next few days, I'll work on making sure they somehow make me stronger.
|Getting Herceptin in Round Two.|
|"Where'd all my hair go?"|
|Stable after the battle with Taxotere. That's the Halloween necklace that Teddy beaded for me during the hurricane.|