I wonder if this is how astronauts feel?
Three days out from surgery day, and I’m starting to tweak out. I have only one half of a Xanax left, and if my primary care physician doesn’t approve a refill, I need to save that for surgery day just to get me in the door of the surgery center.
I’m waiting on the call from the surgeon’s office, to tell me when I need to check in. I had planned to veg out over Perry Mason and forget everything else, but I have not been able to relax. I keep thinking about how after this weekend, when Michaela goes back to school, I will be going into surgery. And I. Am. Freaking. Out.
For those of you keeping track, my initial reconstruction surgery is now scheduled for May 27. I say “initial” because I had assumed, and perhaps you did too, that reconstructive surgery meant “one and done.” It does not.
We have the first “big surgery”, then when everything settles, we follow that up with another surgery. Not as long as the first one, but we’re still talking anesthesia, stitches, and a hospital stay.
Then we have two more minor procedures, to encourage symmetry and an even appearance. To be frank, the surgeon builds a nipple for the new boob, and then we tattoo an areola, if I choose to do that. Apparently some women don’t. Can you imagine? I guess you’d get used to it.
Before we do ANY of that, I have to have a couple of scans done so that Dr. N can find all the blood vessels he needs to move tissue from my belly in order to build the new breast. I know I have to do it, I know the scans are easy, but I think I’ll be calling my GP for an anti-anxiety prescription refill just the same. Needles I can deal with, but those big white donut scanners, not so much. Too much time lying there with crazy $hit running through my head.
More details to follow.
Tomorrow is my third appointment with the micro-vascular surgeon who will perform my reconstruction surgery. Right after we met with the medical team to talk about my plan for dealing with my Stage IIIa breast cancer, I looked forward to this final stage of the plan. After the tumor was out, and I had made it through 20 weeks of chemotherapy, and 6 weeks of radiation, reconstruction with a bonus tummy tuck (I’m having a DIEP flap recon, which takes tissue from your belly to build a new boob) sounded like the wonderful prize for getting through a long and difficult journey. The hard part behind me, a new boob and a flatter stomach – sign me up!
However, right after my mastectomy, I seriously considered not going through with it. Actually, for several months after my mastectomy, I considered not having the reconstruction. The mastectomy took only 2-3 hours all told, while the reconstruction will take 8-10 hours. I had initially thought that the mastectomy surgery would be the hardest thing I had to go through – I had to survive the anesthesia, after all. That’s what I was truly afraid of. I thought once I woke up in recovery, the hard part would be behind me. I wasn’t truly worried about the chemotherapy or radiation, or the recovery. I honestly believed that recovery from removing my breast would be as simple as taking some Tylenol. Dummy.
It turns out that removing my 11.5 centimeter tumor was the easiest part of this whole thing, for me. They gave me the happy juice before I went down to the OR, and probably 15 seconds after I got in there I was off to La-La Land. Waking up in recovery was completely different than I had envisioned. It was traumatic. I felt all over sick, in pain, and disoriented. I couldn’t really communicate, I just laid there and whimpered. I’m not sure my conscious brain was fully aware of what was happening – in that moment my primitive lizard brain took over, and it only knew that things did not feel normal, and that we did not like it. Looking back on the experience, the conscious brain knows now that what I experienced was normal for me. But in that moment, and for months of nausea and muscle spasms afterward, it was only trauma, and not something I wanted to experience ever again.
I experienced that fear before I even met with the medical oncologist to go over the plan for chemotherapy. Since that time, I’ve been through a few other things that once frightened me. I had completed an endometrial biopsy as part of my diagnostics before the surgery, which came back benign. Right before I was set to start chemo, I argued with my first medical oncologist for three days when she insisted I repeat that extremely painful procedure, and could give me no good reason why I should, and then became insulting when I asked to speak to the gynecologic oncologist who had done the biopsy. I changed medical oncologists, and I have completed 20 weeks of chemotherapy.
I have testified at a murder trial, and seen the verdict and sentencing of the guilty party. I watched the whole nightmare of my father’s murder age my extremely vital and resilient grandmother, until she finally decided it was time to go, having seen the guilty party duly sentenced, if not appropriately punished. I don’t know if there is an appropriate punishment for the evil that was done to my father – at least not on this earth.
I have also completed 6 weeks of radiation, and I have had my chemotherapy port removed.
With all this behind me, I am now able to look forward to what the micro-vascular surgeon has to say, and I can honestly say the fear I experienced last spring is not with me today. Whether that comes from the fact that the memory of that experience has faded, or if because I know I have faced worse and survived, I really couldn’t say. I am not sure that I care. The fact remains that reconstruction is neither the prize at the end of the journey, nor a terror I must survive in order to get back to normal. It is simply one more fact of my life.
I was so nervous about my first chemotherapy appointment, I took an antianxiety pill before I went. I took another (four hours later) right before we started my first infusion. I soon found that the infusion was no big deal, it didn’t hurt, and I didn’t feel nauseated, at least not right away. I was so happy and elated about this fact, that I went out with my husband to our local pub, had a beer, and a big meal, complete with bread pudding. Major nausea four hours later, so I never did that again, and as long as I stayed ahead of the nausea, there wasn’t much in the way of big, scary drama.
I did chemotherapy for so long that it became routine, just something I had to do, like going to a job. I had no fears about it, and in some ways actually sort of looked forward to it. Leave aside the blood draws, the premedication, and the side effects. What did I do for 2+ hours every other Thursday through A/C, and every Thursday through paclitaxel? I got lunch and coffee, bought a fashion magazine and a box of Dilettante Truffle Cremes, then went to the 5th Floor to watch cooking shows, knit obsessively and nap. How awful does that sound? Yes, I usually felt like crap a few hours later, and for days after that, but while the infusion was being administered? It was mostly relaxing. I reclined in bed, and people brought me warm blankies and cookies. I know that’s not how it is for other cancer patients, but that’s how it was for me.
But today, I went for the radiation simulation appointment. Let me tell you, while I was doing my chemotherapy, I kind of put it out of my mind why I was doing it. I just had to do it. But today they had to get my radiation cradle made, which was sort of cool. They mold it to out of polyfoam, so I felt like I was a model for Face Off. But most of the time I was lying on a CT scanning table, looking at the outer rim of a GE Lightspeed scanner. Lying there, that’s when it hit me – You Have Cancer. This is officially Big Shit happening in your life.
I’m back to feeling a little more complacent – I’m being treated for Stage 3 breast cancer at Seattle Cancer Care Alliance, the best place in the nation, maybe the world, for late stage cancers. I’m in GREAT hands. But there is more definitely a higher level of stress in our house. For me, the trigger is the big white CT scanner. For Ken, it may be the same thing. When we were driving away after leaving the facility, he exhaled in this big, slow puff of air. It’s a sound he ONLY makes when he’s under high emotional stress. Like he’s trying to keep it together while I’m going through my shit. Which he is. People think this is hardest on the cancer patient, but I think it’s hardest on the care giver. Especially someone like Ken. Most of my catastrophes and heart breaks, he can DO something about, he can blow the demons away. For example, when I was packing my apartment to move in with him, I was overwhelmed and crying most nights. Overwhelmed to the point of being immobile. One tear filled phone call to him, and he was over shifting boxes and hauling trash away until I had one clean, organized corner on one side of the apartment. He said “Whenever you feel overwhelmed, just take a breath, and look over there. That’s your corner of calm in the middle of the chaos. You can look at that, and know that you are going to get through this, and that I am going to help you. We can do this. It will be okay.” And it worked. It was still a scramble, and at the end I was throwing shit randomly into boxes to sort out later (I think those are still in the storage unit, taped shut), but it turned out okay. I was passed out in bed with the cat at the new house by 8pm, while he was making a store run getting hot cocoa and chocolate for me, but we made it.
But cancer? This is one thing he can’t chase away from me by sheer determination and muscle. And that is hard on him. And he hates it.
But he comes to ALL the appointments, even to the boob doctors and the gyno-oncologists, when most men don’t dare to venture. He holds my hand (or my foot, as was the case in the Symphony scanner at Virginia Mason) when I am terrified. He makes jokes (sometimes) when the doctors are shoving needles into my fibroids to take samples. He rubs my tummy when I’m crying out from the pain of an endometrial biopsy, because I can’t do it myself. And today, he waited patiently in the hall, making small talk with Randall, our goat raising, master gardening half of today’s simulation crew, while I was changing into my gown in preparation for the simulation. I have to say, Randall is fascinating, and extremely entertaining. If you need good advice on growing pumpkins, or how to build a bed for morels, Randall’s your guy. He also knows what he’s doing when it comes to keeping you calm while you wait for the doctor, and how to help you to sit up from the scanning table, which is NOT easy. I’ve been on a lot of scanning tables, and I’m here to tell you, Randall knows his shit.
The doctors arrived, rearranged my position, and then they started tagging my with stickers. I have a lot of flesh to manipulate, and at one point the doctor was asking for something to hold my well padded shoulder tissue out of range of the scanner. I’m not sure, but I think the item they use to hold your fat out of the way is called a “pudgette”. This struck me as appropriate and extremely funny, so I started to snicker a little bit over that, though I tried to stifle it, because a) this is serious shit, and b) I wasn’t supposed to move while the mold was hardening around me.
One test scan, some more readjustment, and then the final initial scan. Then it was time for the tattoos.
They tattoo you so they aim the radiation beams at the exact same spots every time. It hurts like a tattoo, but just for a second or two each time. I’d like to say I’m covered in little daisies or four leaf clovers, but it’s just a lot of tiny lines no one would really notice.
My radiation oncologist has to leave for that part. I think it breaks her heart to see her patients cry out in pain, and knowing that she has ordered it done to them. Some people find the tattoo process very painful, even if they already have tattoos of their own choosing. But I had Randall and Alisha with me, my two techs, and it was over pretty quickly. Then they had to photograph my tattoos, with Randall making jokes about the photographs going on Alisha’s Facebook page, so I pretty much forgot everything about being scared, and started thinking about how I would soon be going home, where I could research how to build a bed for morel mushrooms.
Just back home after completing infusion number 11. Riding down in the elevator at SCCA, for the first time in a long time, I FELT like a cancer patient. So drained, and my hands tingling like they were shot full of the anesthesia they give you at the dentist…
And for the first time EVER, I had a moment when I wanted to call my doctor and tell her I don’t want to do the final infusion. My hands were so numb, it scared me. I kept thinking how I wanted to take a nap, but I was afraid to go to sleep, as I might be having an allergic reaction. Up to this point, I’ve been taking the paclitaxel like a champ. But the side effects are cumulative, so perhaps an allergic reaction could still happen, even though I’ve had no issues on that so far. Driving home with Ken I was having visions of ending up in the emergency room this time, and was considering calling the oncologist to tell her “I can’t do this again.”
Thankfully, the feeling has passed, and my hands and feet feel as they normally do during this process. Tingling and numb, but well controlled while I am taking the L-glutamine. And in no way frightening. Just annoying.
But I’ll let her know what happened, and how long the effects lasted, and let her do what she does best. Because she is awesome.