Today is my 3 month (really it’s 4 months) follow up with the Radiation Oncologist. I don’t expect anything dramatic. I envision that she’ll check the skin on my chest where I had radiation, ask me how I’m doing, wish me a happy, long life, and send me on my way.
Yet here it is about an hour before we have to leave, and I am nauseous. I thought I was done with this. Crap.
Chemo ages you.
I’m convinced of that.
Just over one year ago I was walking a mile every day to work, and sometimes another mile between offices during the day.
Yesterday, I had done one load of laundry, one load of dishes, made lunch for Michaela and Ken, and then lunch and tea for myself, and after than my legs were heavy and my feet were in pain.
It amazes me to think that a mere 14 years ago I was stomping all over London and the British countryside for 10 weeks, and I was rarely as tired as I am right now.
Grieving what was
I’m grieving today. Grieving for the young woman I once was. I didn’t appreciate what I had at the time. I guess everyone wants what they don’t have, somehow believing it better than what they do have. I regretted my large pores, my broad forehead, my prominent chin.
Like most women, I tried in vain to shrink my pores.
For a long time, I wore my hair long, and kept it pulled back from my face, even as I looked at my reflection in disgust, considering my giant forehead.
And I actually considered plastic surgery to “dock” my out-there chin.
Fool. Looking back at photos of myself at 25, all that I see is how beautiful I looked. All twenty-somethings are beautiful. They can’t help it. You’re young, your skin is taut, and dark circles under your eyes just make you more fascinating. It means you have an interesting life, outside of your work life. You roll out of bed, messy hair and rumpled clothes, and last night’s makeup. You look gorgeous. You don’t believe me now, but when you’re 40, look back at pictures of yourself at this age, and you’ll see I was right.
I look back at the image the 25-year-old that I was, and I grieve for what has been lost. The youthful outlook, the anything-could-happen-so-everything-wonderful-is-yet-possible mind set.
I’m no longer that young woman, with the quick, light step. I still believe anything is possible, and I will always believe in hope. But I have to hold onto that based on faith – I don’t have the energy I once had, and I sure don’t have the physical resilience I once had. And now I accept the fact that I am mortal. I don’t think I fully believed in death and mortality when I was in my 20’s. It seemed so far away, as to seem like only a story. Yes, that happens to some people. But not to me.
But today, I am disabled. At least for the foreseeable future. That is a hard truth to come up against. I am not what I once was. And I never will be.
I am strong. I am powerful. But I now walk with a shuffle and a little bit of a limp. I walk like an old woman.
In my mind, I see the image of who I was 25 years ago, and I see a young woman skipping down the escalator at Westlake Mall. I remember a young man, a stranger, approaching that woman, and asking her to have lunch with him, because he is so drawn to her.
Then I look in the mirror, and grieve.
I sit at my computer, and my hands begin to tingle as I type this. Shortly they will feel numb, and I will have to stop.
I get up from the computer to walk into the living room to rest my hands. I shuffle along, because my hips are stiff, and my legs ache. Where is that girl with the light step, now, I wonder?
I sit down for a while, putting my feet up, to take the pressure off my knees and my hips. I can’t knit, because that hurts, too.
I try to relax, and I have stabbing pains in my heel, I assume from neuropathy.
I am disabled. But I am glad to be alive.
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.
When I was receiving the chemo dose of taxol at the halfway point, my oncology nurse commented, “You’re at the top of the mountain!” Looking back on that, I can see now that she meant we were at the zenith, so to speak, of my chemotherapy regimen with taxol, and I could begin the countdown to the last one. Which is something to celebrate, even though I still had 6 more weeks to go, and nothing had changed about my situation at that moment.
At the time, I was thinking “Yay! All down hill from here!” Never having climbed to the top of a mountain, I of course knew nothing about what it actually might take to come down off the mountain. I was all about “Yes! We made it to the top!” Little did I consider that coming down the mountain is just as hard and treacherous as climbing up. Perhaps more treacherous, as you are moving in the same direction as gravity coming down, and your chances of falling on your ass increase as a result. Still, I’m no quitter, so I’ll just keep on truckin’ cause I sure do want to get off this freaking mountain. I didn’t want to climb it in the first place, but I got chased up here by that damn tumor, so it was climb or perish and here we are. Now I get to pick my way down, oh-so-carefully, and I already know I will not reach the bottom unscathed. I have quite a collection of bumps, bruises, and boo-boos already, and the big finale still to come.
Just when I learned to take certain things for granted, like putting on or taking off a shirt over my head.
One week out from the port removal procedure, and things seem to be healing just fine. I had a good cry last week after I had it done. I don’t know if it was left over from the sedative they give you, but that whole next day I was a bundle of tears. First I cried because I couldn’t believe the chemo was over. Then I cried because the radiation was done. I cried because for the most part, the heavy stuff is over with, and it’s all recovery from here (which we know is heavy stuff all on its own). I cried over Ken’s procedure, and volunteered to have my own baby making equipment put out of commission. I told him I would do it because I was used to it. He just laughed, of course. And of course he was fine on Friday, and every day afterwards.
This morning he’s picking up the school auction catalogue and taking the kid to school. I’m home looking for socks to wash, which is a treasure hunt/obstacle course, as Ken hides them from me. Not really, but I’m not kidding, it’s like an Easter egg hunt looking for peoples socks in this house. Especially if they’re dirty, and the wearer is out of clean socks.
So I’ve been looking for his dirty socks to wash, as I have no idea how long he’s been running without a clean pair – he doesn’t tell me, he just finds a pair of not-too-dirty socks and wears those. He mentioned he took his shoes off at the doctors office on Friday, and put them right back on again, because his socks were not clean. I felt bad about that, sending him out the door with dirty socks. He works hard, and has been running around like a crazy person for weeks chasing down content for that auction catalogue. The least I could do is keep him in clean socks and underwear, right?
Which is why I’m poking around here this morning, on a mission to find socks. I found a few, and I’m not sure they all match one another, but into the wash they go. He’s got a big day today, and the man deserves clean socks to wear why he goes out to conquer the world.
But now I’m exhausted from hobbling around here, and all of the stooping over, and looking in hampers and under dirty clothes on the floor. And it’s not even 9am.
Port is coming out today!
After 20 weeks of chemo, 6 weeks of radiation, and a few weeks rest break, my beloved little purple port is coming out today.
I took my first dose of Tamoxifen today. I set my phone alarm for 12:30pm every day, because you’re supposed to take it around the same time every day.
One of the side effects my doctor talked to me about was increased chance of blood clots, so I figure if I drink one glass of red wine every night, I’m good.
Red wine is good for that, right?
That’s my story and I’m sticking to it.
I mentioned a few days ago that I had seen my medical oncologist, and that she had given me my prescription for Tamoxifen. I also mentioned that she said I could start anytime, as long as I started before the three month follow up. I’ve had the prescription paper sitting next to my recliner, with the thank you letter I wrote to my friend Susan, and the check for the Boy Scouts for the Christmas tree pick up they did early in January. The two items for the mail are STILL sitting there, but tonight Ken took the prescription up to Walgreen’s to be filled.
He just returned, and let me know that the Tamoxifen would be ready later tonight, and we could pick it up tomorrow. Now, I’m not especially worried about side effects, and from everything I’ve been reading, most patients don’t notice any SE’s right away. But I’d decided, sort of subconsciously, that I would wait until after Valentine’s day to start the regimen. I told Ken this, when he gave me the prescription status, adding that he didn’t expect I was in such a hurry to start that I would need it tonight. He looked at me for a beat, and so I felt the need to explain myself, and why I wanted to wait until AFTER Valentine’s Day.
He told me “The best Valentine’s gift you could give me is to stick with the program.”
Can you believe that guy?