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.
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?
We met with the medical oncologist yesterday, and I received my prescription for Tamoxifen. She said I could start any time, as long as it was before we meet again for my 3 month follow up. Ken suggested I wait until after the Superbowl, so I don’t have to suffer with some of the more common side effects, and can enjoy the game. But everything I’ve been reading on www.breastcancer.org indicates that most patients don’t notice any side effects right away. Still, I think I will wait, at least until next week.
She told us that weight gain, or at least trouble losing weight is common on Tamoxifen, as it messes with your metabolism. I also learned that chemo messes with your metabolism. Here I thought it was all because of the steroid. But no. And now I’m frustrated, grumpy, and obsessed with the unknown – again. I have no idea how my body (and mood) will react to this drug, so my mind immediately goes to the worst. I’m going to be a fat, bitchy meanie head, with out of control emotions, my daughter will be afraid of me, and my husband will want to divorce me. In short, I’ll become my mother. But that’s another story…
I can’t blame everything on my medication, especially the weight gain, which seems to be primarily settled around my waist. I gained only 14 pounds on the A/C regimen (only!), and it came off pretty fast (to be honest, I was fat to begin with). Therefore I expected that I would drop the 27 pounds I’d gained on taxol just as quickly. But I just keep on losing and gaining back the same 2-3 pounds, no matter what I do. At least it seems that way. I don’t feel that I’m doing anything different now that I was doing when I finished my A/C, except of course I’m not traveling like I was those three weeks after the A/C. I was under a lot of stress, so I also barely ate, for fear that I’d mess up my digestive system even more than the chemo did.
Thinking about it now, after the sentencing hearing was behind us, and everything about my father’s death was resolved (at least as much as it could be, for the present – again, that’s another story), I went into comfort eating mode. I wasn’t constantly nauseous from chemo, and life went back to (relatively) normal. This significant lack of stress contributed to my weight gain on taxol. I gave myself a pass to eat anything I wanted, and rest as much as I wanted. This explains why I gained 27 pounds during my taxol regimen, rather than a measly 14, as I did on A/C. This may also explain why I haven’t been able to peel the extra weight away now that I’m not having weekly infusions of chemo.
Now that I’m complete with all of my chemo and radiation, it’s time to start thinking about recovering not only from the treatment, but from my “free pass” from taking responsibility for my health and weight. I’ve started to be more mindful of what I’m eating. Not so many bagels with cream cheese, more leafy greens at lunch; however, still plenty of cream and sugar in my coffee. Some things I just can’t give up. Plus I’m crazy about Ken’s “mansangna” which he makes during the Seahawks games. I’m not kidding, it’s the best lasagna I’ve ever had. Cheesy goodness…
Since I love food, I have to believe exercise will be my saving grace to burning off the belly fat. It always has in the past – housework, yard work, walking to the store – because I can’t stand going to the gym. I feel like I don’t belong there. That’s for young, vital, in shape people. But that’s just me.
The thinnest I’ve ever been since high school, I still weighed over 140 pounds, and my face was gaunt. And I ate chocolate every day, pasta 3-4 times a week, and drank coffee with cream and sugar twice a day. The only exercise I got was walking – lots of it. Probably 20-25 miles a week and that’s no exaggeration. I was studying abroad in London, and one of my classes was Art and Architecture, which was lots and lots of walking every single week. So no one can tell me simple walking doesn’t burn calories and fat – it does. At least, it works for me.
I guess what I’m getting at is my exercise has to have a goal other than weight loss. A clean house, a decent garden, or seeing beautiful places and things and meeting wonderful people around London, Paris, Charleston, etc. My jeans fitting a little more loosely will be just a bonus.
Hmm, maybe this “bigger picture” approach is the key to my recovery from breast cancer, as well.
I have written before about my expectations for each phase of this process. You know what I keep saying - once I get past the surgery/A&C/taxol/radiation, the next part will be easy, I say to myself. Ha! As we’ve all learned by now, nothing is easy compared to anything else. Each phase is just different. You’d think I would have learned that lesson by now. But forgetfulness takes charge, and after I’ve completed everything, I found myself feeling like I hadn’t suffered enough to really call myself a survivor. Yeah, I had pain after the surgery. A LOT. But that’s in the past and I forget about it, because I have new things to deal with.
The A/C left me nauseated; the medication to help me with the nausea left me constipated; the drugs I took to protect me from having an allergic reaction to the chemo left me agitated; and the whole mess left me exhausted. Exhausted and bald.
After a three week break, we started the taxol. Ah, the taxol. How I worried about the taxol. Everyone told me that it would be different than the A/C. It had it’s own issues, though most patients have fewer issues with taxol than A/C, or at least the taxol issues were easier to tolerate than the A/C issues. Other breast cancer patients I’d read about on line said differently, that it was actually WORSE for them than the A/C. So for once I wasn’t expecting an easy ride by comparison to my experience to the A/C. But I was terrified about losing my nails.
As I have mentioned before, one chemotherapy agent has proved to be neither easier nor harder to tolerate than the other. Each is simply different. I didn’t lose any MORE hair during taxol, and the hair on my head, which started to grow during my break from A/C when we traveled so much for the sentencing hearing, kept on growing. Still no eyelashes or eyebrows, though, which makes it interesting on the rare occasions when I felt like applying makeup.
Then came radiation. By the third week, I was back on anti-nausea medication. Why would I be nauseas? The radiation oncologist didn’t seem concerned about it, and offered to prescribe an anti nausea medication, which I declined, as I still had PLENTY left from the collection I’d gathered all through my A/C. Every day like clockwork, one hour before we had to leave, I’d be nauseas. Only ONCE did I ignore it and go without the medication. That was the most miserable radiation session of the entire course, and I barely made it through without begging for a break. But that would have started the process over again, and that I was sure I couldn’t get through. I would have blown that radiation session, and it would have been tacked on to the end of my series, and I had a terror of extending my series past 2013. Then by the third or fourth week, I was on twice daily ibuprofen for the inflammation and pain. My skin looked like hell, and I couldn’t wear a bra. Radiation sucks. The aloe and prescribed radiation gel no longer helped, as it dried out my skin more than it soothed, and the calendula cream just burned. Thankfully the nurse working with me gave me a more emollient, gentle ointment (Aquafor, I love you!), which got me through the last weekend.
Now it’s two weeks after the final session, all the grey/black ash that was the top layer of my skin has peeled away, and left a nearly normal-looking layer underneath. It looks good, though it stings like anything. I’m still taking the ibuprofen for inflammation, especially when I do too much. I guess you could say that I can finally accept that radiation is really, truly behind me, though the pain and tight skin remains. I can wear a bra now, sort of, but not all day, and if I push it past 5 hours or so, I feel like I need to take a scissors to the bra to get out of it.
When exactly does this get easier? Yes, I’m elated that I am not being radiated every day, or being infused with chemotherapy agents once a week or so. But seriously, recovery may be the hardest phase I’ve encountered yet. Quite frankly, it’s a bitch. I want to be able to do the things I could do before, like, oh, I don’t know, pick up all the laundry, get it washed, dried, folded AND put away, and NOT be completely done in the next day? As I write this, though, I realize now how far I have come since March 29th. It wasn’t so very long ago that just taking a shower would do me in for the afternoon. Recovery is HARD, maybe the hardest thing I’ve ever done. But now I can really see it – I Am Getting It Done.
It has now been more than one week since my final radiation treatment. We’ve had New Years, packing up the Christmas gear for another year, and thinking about next steps as far as our housing arrangements for the next 3 years, and beyond. And I have three blissed weeks off from doctors and needles and hopefully anti-nausea medication, in which to luxuriate in those less exciting topics. I had had a return of my nausea those last three weeks of treatment, every morning about an hour before we had to leave to drive into downtown. Hmm, I wonder why that could be….
It’s been a long haul, but we’ve finally finished 20 weeks of chemo, and 6 weeks of radiation. Oh my g.o.s.h., who would have thunk it…I know I couldn’t imagine being here, standing in “The Hard Part’s Over” Land. And I thank you for joining us on this larger than life, unexpected journey. There is still a long way to go, but we have a little time to rest before we start the trek down the mountain.
About 3 weeks into the radiation process I often had the horrible thought that on the final day the doctor would say “Just kidding! You’ve got 12 more weeks to go!” This is similar to the worry I carried around before my final chemo infusion. I mean how could I be done, so simply as that? Shouldn’t I suffer a little longer? Shouldn’t I have to work harder at this? But as we now know, the final infusion came and went with no drama, and no fanfare.
My final radiation appointment was about the same. It’s funny, the ten appointments leading up to the final, while I was anxiously counting the days, and trying to fit Christmas in there somewhere, giving up a lot of what I had envisioned – clean house, outside trees adorned with ornaments, my ceramic Christmas Village set up, with a new addition or two – as often as not, I found myself getting a little sad about the prospect of being “done” at least for the time being. I’ve been at SCCA every week or two for nearly 6 months, then was there every day for another 6 weeks. These people were like beloved coworkers to me. We all had the same goal, taking care of my cancer so I could take care of the rest of my life. We all know that there will come a time when I am NOT doing this. But when I’m knee deep in it, I can only focus on the now, on getting through each treatment, which is not as bad as I thought it would be, but it’s not as easy as I thought it would be, either, if that makes sense. In short, radiation therapy is nothing like I thought it would be.
Each hurdle I pass, I think, “Okay, this next part has be to a piece of cake compared to what I just went through.” Don’t kid yourself, it isn’t. It’s just different. During radiation I may not have the mind-numbing fatigue and miserable nausea I had with the A/C regimen, and as much as I declare I’d rather have pain that the awful completely-at-sea-in-a-storm feeling I had on the pain medicine, know this: Radiation damage still sucks eggs. It hurts, and there’s nothing you can do about it other than apply the gels and ointments, take the ibuprofen, and go back the next day asking for more. Thinking about it now, I am VERY grateful for the good advice from the plastic surgeon last March, and didn’t get the skin sparing mastectomy surgery. That extra skin flap would have made the situation even more hideous and painful.
But even in the face of all of that, I was going to miss seeing my therapists every day, and the lady at the front desk with her cheerful smile, and I would literally tear up at the thought of it for the 10-12 days leading up to that final day. I love my radiation oncologist; I looked forward to the therapists stories every day; and it was a delight sharing our cooking accomplishments with one another. But as much I loved all of that, on the final day, I couldn’t get out of there fast enough.