Thursday, November 10, 2011

lumpectomy, NYC Marathon cheering and that lingering jerk - chemo

I have a few thoughts bouncing around my head lately that I feel like capturing for myself or possibly for anyone out there facing a lumpectomy. I will also probably ramble into the realm of post-chemo life because I'm in need of some writing therapy on that front. I may even share my thoughts/reaction to the movie 50/50. Yes, I saw it. By myself. And I recommend it.

First, I was skeptical when my surgeon told me the "procedure" would be pretty simple, especially since I knew he would be removing my sentinel node. If you do any amount of googling, you will discover that removing any lymph nodes will almost certainly result in lymphedema - fluid retention and tissue swelling in the arm in which the lymph nodes are removed. According to the fear mongering internet, this can result in a loss of range of motion in the arm and even permanent disfigurement. My surgeon reassured me (a number of times) that he was not concerned as this is now very rare when only the sentinel node is removed and that they monitor it very closely.

At any rate, tomorrow will mark one week post-lumpectomy and other than some tenderness at the point of the incisions, I feel pretty much recovered from surgery. I have two incisions between 2-3 inches in length. This may not seem like a large incision for those of you with more ample breasts but for me, the incision on my breast covers the whole left side and the one closer to my underarm (for the removal of the lymph node) covers most of that space as well and is conveniently located in precisely the location where all bras end. Meaning, whether I wear a regular bra (just managed to do this successfully for the first time today) or a sports bra, the seam rubs right at the incision point. Not exactly comfortable. But not terribly painful at this point, just irritating. Also, the rubbing resulted in the steri-strip on that incision falling off much earlier than my other steri-strip which is still firmly in place. After consulting my post-op instructions which indicated I should wait for them to fall off or let the surgeon remove them, I peeled the last remnant of it off this morning to get my first real glimpse at my scar.

It isn't pretty. But it isn't hideous either, despite the fact that I have been referring to my breast as "franken-boob." The worst of the bruising has changed from the blue-black-purple phase to a yellow-violet phase.

Oddly enough, for the first time in my life, wearing a bra has been more comfortable than not wearing a bra. Yes, even with the rubbing issue. I had read this pre-surgery and purchased a zip-front sports bra since I wasn't sure how easy it would be to maneuver my way in and out of a sports bra. This was my best pre-surgery planning. I wore that bra day and night for the first three days straight. When I took it off for the first time Saturday night to shower for the first time, I couldn't believe how heavy my breast felt when set free. It pulled a bit on the stitches and was just plain uncomfortable.

I realize this is all very scattered but I'm just going to let this spill out as it comes to me and mention here that pain wise, I only really had pain the day of surgery. I took a Tylenol 3 shortly after getting home, mostly because I didn't want to get to the point of pain and then took one more before bed - again to stay ahead of the pain and to help me get some sleep. Saturday I may have taken one or two extra strength Tylenols and possibly one on Sunday but after that I haven't had any pain to complain about.

I stayed home all day Saturday but got really bored and restless and when my mom and sister returned from shopping (which I encouraged them to do, they didn't abandon me), I was irritable and picked a fight with my sister for no reason other than frustration. Frustration that I am not myself and incapable of being myself. Then I blamed her for not cutting me some slack and having patience with my terrible moods. Not my best moment.

Sunday all was better and we watched the New York Marathon for a bit of cheer and inspiration. We cheered the elite men and women and the wheel chairs run along Central Park South for their last mile. It was amazing. We took a short break to have brunch with my mom (who, incidentally, ordered the best pancakes I have ever eaten!) and then returned to Central Park South to cheer on the masses who were now constantly running by. I didn't know how long I could last and whenever we were near any kind of tight crowd I got a bit anxious, just afraid someone was going to knock into me. My sister stayed on my left to protect me and we found a good spot where no one jostled us. Just as I was getting tired from yelling at strangers, I saw someone I knew run by! He was one of three people I knew running and I didn't expect to see anyone since I hadn't made any plan. I yelled his name and he glanced over his shoulder as I clapped the big balloon clapper things (no idea what they are called) at him. This made me want to stay longer in the hopes of seeing his sister, a friend I was hoping to see. Unfortunately, my stamina didn't last that long. My sister encouraged me to head home before I went past my tolerance level.

As a result of Sunday's exertion, I spent most of Monday sleeping. My mom and sister ventured out to Ellis Island and shortly after they left I was struck with that weird eye-closing headache that forced me back to bed. I didn't get up until 2 pm.

Chemo and surgery may be behind me but real recovery from chemo is still ongoing. I get worn out after about 40-50% effort of what might be deemed my "normal" and I need about 9 hours of sleep a night to even have the energy for that 40-50%, but this is slowly improving. Tuesday was the last day my mom and sister were here and the weather was unbelievable - around 70 degrees in November! We went out to do some shopping and walking and cookie purchasing and luckily for me the first store we went to conveniently sold bras because my decision to wear a normal, underwire bra was a bad one. The bra dug in all the wrong places and didn't compress the way I had become accustomed to. So I bought two more sports bras that turned out to be super comfortable. Today I went into the office and couldn't bear the idea of wearing a sports bra to work so I dug out the one bra I own that doesn't have under wire and managed to tolerate it for the 5 hours or so I was out.

I went to the oncologist yesterday and expressed all my frustrations with the lingering side effects and the after effects of chemo. My number one complaint? Why had I suddenly gained ten pounds since my last chemo? I am now back up to the heaviest weight I have ever been and the only time I was here was back in May when I was giving myself hormone injections for my egg retrieval. She pointed out the obvious - I was eating about 2/3 my normal amount of food and now I am back to eating my normal (and sometime more than normal) portions but not exercising the way I used to so my metabolism was thrown off. Plus - wacky hormones. Not to mention all those ridiculous chemicals that were pumped into me for months. The hardest part is everyone has it in their head that chemo patients lose dangerous, scary amounts of weight. But that isn't the case for everyone. Chemo is such a roller coaster and everyone's body reacts so differently that weight gain is actually a very common side effect. I was actually happy that I was more or less maintaining my weight throughout. There was a point in August when I was still adjusting to Taxotere and the thrush that came with it when I got down to my thinnest point and worried that two more rounds of chemo would leave me thinner than I wanted. But for some reason, I gained weight with the next two rounds and finished on October 5th at about my "normal" weight, meaning the weight when I want to lose 10-15 pounds.

One of the uglier, unmentionable chemo side effects I experienced was extreme constipation. I think I went about a week at one point without a bowel movement. Painful, yes. And bloating, gas, abdominal pain and diarrhea usually followed. Those last two rounds of chemo these side effects hit harder than early on and I think that is why, even without eating much, my weight came back up a little. But honestly, I feel like the massive bloating and these extra ten pounds are like a giant, last "F*#@ You!" from chemo. A parting gift of sorts. Combined with the very emotional un-tethering from the routine and schedule of chemo treatment, bad days, good days, rinse and repeat, I've been struggling more in the last few weeks than I ever have. I'm not finished yet. I still have cancer. No one is telling me I'm in remission yet. I still have radiation treatment ahead of me. I am still bald. I am still losing my eyelashes and eyebrows. I am still tired all of the damn time. I am still not well enough to go back to work. I am more alone than I have been since this all started and now I feel fat.

Cancer is finally crashing in on me, around me, through me. I am realizing there is no going back to "normal." That life I had back in April is over, it is forever behind me. Yes, there will be a new sense of normal once this is over but my innocence is gone. I never seriously considered cancer even a remote possibility for me. Not now, in my 30s while I am single. Before I even had a chance to "settle down."

A couple of weeks ago as surgery loomed just ahead of me and I struggled to find pants that fit, I snagged one of my odd fingernails on a drawer. I have been keeping my nails really short as the top layer of several of them have been pulling away from the nail bed and they all have several white rings and ridges on them. In the last month or so of chemo my nails started getting really sensitive and I worried about losing them. One pulled off several weeks ago but it was relatively painless. But this one I caught on a drawer was bleeding and hurt. A lot. I was trying to get out the door during a freak October snow storm to make a bus to visit friends upstate. But everything was conspiring against me and I ended up missing my bus by 3 minutes.

I nearly collapsed in tears at the Port Authority. I couldn't face trying to get another cab in that terrible weather so I went across the street to the movie theater and bought a ticket to see 50/50. I knew I was already an emotional wreck and I wanted to wallow in it. You may question this decision but honestly, I have only allowed myself a few brief glimpses of these feelings and I just needed to dig around in them for a bit in a dark movie theater.

The movie was perfect for me at that moment. I cried, yes. But mostly in a good, cathartic way. I also laughed. And tried not to nitpick details I felt were unrealistic. It was my first glimpse at a cancer experience I could actually relate to. I've read books. I've read blogs. I've read articles. I've watched movies. I've even spoken with a few people. Nothing rang true for me. The feelings people expressed at diagnosis did not resonate with me. Various people's experiences with chemo either left me feeling like a giant baby for not pulling it together and trying harder or made me feel guilty for slipping through the whole process relatively easily.

But mostly, I have found myself secretly resenting people with a built-in support network. Sure, it has to be hard to continue to take care of kids while also taking caring of oneself but I can't help but think those people also have a purpose, someone to get well for. I am not complaining about all of the people who have been there for me but ultimately, as a single person with no one person to rely on, it is hard not to have a little resentment towards those who can turn over some of their care to someone else. I have been unbelievably blessed by people in my life willing to step up and help me. But I have had to organize all of it. And I've had to learn to rely on people who are not in my close circle which ultimately takes more effort on my part. There are very few people throughout this process with whom I can absolutely let down my guard and let in. I constantly feel the need to reassure everyone around me that I'm doing great and improving and getting better. To the point that I realize many of those people who only see me periodically through my treatments believe I've just sailed through it all and pretty much all better now. Especially since I don't have that gaunt "cancer" look they expect. Maybe if they saw me in the morning when my face is extra puffy, before I put makeup on for color and fake eyelashes to look like a person, they would realize it still sucks. It isn't over just because you can't see it.

A couple of scenes in the movie truly resonated with me. In one, the guy is sitting on the couch exhausted and his phone rings. The caller ID shows it is his mom and he doesn't pick up. The look of fatigue on his face is one I related to so well. She calls his cell and he picks up. It is hard, as an adult, to once again be reliant on ones parents. It is also difficult to place this kind of burden on anyone, especially my parents. Especially my mom. In another scene, the guy loses it and just gets angry and yells at his friend.

There is more I wanted to share about the movie but, at this point, my mind is turning to mush and I'm having a hard time forming complete thoughts. So, in an effort to get myself back into writing, I'm going to go ahead and publish this without attempting to fix the rambling, stream of consciousness mess of it all.

I'm tempted to give some reassurance here at the end that all is well and I'm just great and all of that. But that isn't entirely true. Yes, last night I went for a run and felt so much better to get out of my apartment and out of my head. And then this morning I worked out with my trainer and told her I was ready to lose the weight and be strong again. And I felt better. But that doesn't mean the darkness and loneliness don't creep in at night when I'm alone trying to pass the time until my next doctor's appointment or social outing. The hardest part about realizing you may be struggling with depression is doing something about it. When I feel terrible I have no energy to research options and when I feel good I don't feel I need to worry about it. This, right now, is the worst part of cancer.


Tiffany said...

Remember, we love you and want you around when you're doing great, but we also love you and want you around when you're not doing great. Come spend some time at your country home so we can hug it out.

Artax said...

I'm sorry you've not been doing well. It's hard to write a comment that isn't less than helpful, since I haven't been where you are and I know nothing about it. But I'm wishing you the very best, and I hope that this stage passes quickly. Thanks for the courage to write about it. That's important.

Anonymous said...

Perhaps it works differently in America, but the process in the UK is that technically after surgery you are cancer free and the radiation is then given to prevent recurrence.... perhaps it has all been removed now? Radiation tends to be tolerated much more easily than chemo, so at least the worst is over. I hope you feel more like yourself soon.

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