He’s so young and so cute ya just want to squeeze him. And he’s a hugger, too, so squeezing him is definitely an option. Me, I’m not much of a hugger, as my book club buddy Laura will tell ya. She manages to get more hugs out of me than anyone. I’m not very touchy-feely by nature, but I’m working on it.
I got a couple of hugs from Dr D yesterday, and since I won’t see him again until January, he said Merry Christmas and Happy New Year, too. That makes me panic a little, thinking the holiday madness is upon us and I don’t have enough time to engage in the consumerism that has become de rigueur. I also don’t tend to think that far ahead. I’m more of a small-picture kind of girl who’s learned not to look too far down the road, because there might be something wicked lurking, like a 15mm invasive ductal carcinoma and its nasty friends, DCIS and Paget’s Disease.
Dr D is very big-picture, though, and he’s not at all worried about something wicked lurking down the road. That’s one of the many reasons I like him — every time I see him, he tells me he doesn’t think my cancer is going to come back. That’s music to my ears and a balm for my worried soul. When I told him that I think about recurrence every single day, he tut-tutted and told me to think about something happy instead. Duly noted.
We had a long talk about my love affair with alcohol, as we do at every visit. He knows I’m a fan of the sauce and while he would like to see me cut back because of alcohol being a risk factor for breast cancer, he also advises his patients to live their lives, and he’s realistic about the studies being inconclusive about just how big of a factor alcohol is anyway. I pointed out the tragic and really-not-fair example of Linda McCartney, wife of the famed Beatle, who died from breast cancer even though she was a hard-core vegan, ate 100 percent organic, had no family history of the disease, and never drank. You can’t live much cleaner than that, and the bastard still got her. I’m not vegan, but I am hard-core vegetarian, I eat a lot of organic, I actually like fruits & veg, and had no family history of the bastard disease, so I’m going to enjoy raising a glass here and there. Not every day, like I would like, but that’s my choice. There’s nothing I like more than having a glass of wine while I cook dinner every night. I don’t do that anymore. But I’ll still say cheers to the freaky weekend. And if a certain someone shows up with an unexpected bottle of bubbly because it’s Tuesday, then I say life is for living and pop that cork.
Once we discussed and debated the effect of alcohol on BC patients, we (thankfully) moved on to other topics. He has a very nice bedside manner that involves him spending a good deal of time looking right in his patients’ eyes and asking how the feel. How they are coping. How they are emotionally. He knows that fighting the vicious beast that is cancer is way more than a physical battle, and he spends the time necessary to check on the non-physical battlefield. Smart man. In this process, however, he might have bitten off more than he wanted to chew by asking me if I’m happy with my reconstruction. Cue the $100,000 question.
Do I think my surgeons did a good job with my newly reconstructed chest? Yes. A fantastic job. Does it look 1,000 times better than it did pre-reconstruction? Way. But am I happy? Not so much.
See, we had a conversation very similar to the one last week. And I pointed out to Dr D, as I have to other docs, that I am one of the uncommon BC patients who was happy with her body before cancer ignited a stinking bag of dog-doo on my front porch. Sure there were some things that I wanted to tweak, after having babies, nursing babies, and turning 40, but overall I was happy before. That makes it kinda hard to then be happy with the after side of multiple surgeries and their far-reaching side-effects. I predicted that long after my “journey” is complete and I go back to my pre-cancer life, I will always see the scars instead of the progress. Not to be a Negative Nellie, mind you, but because I am very realistic. I know that the 17-inch scar on my belly will fade. In fact, it already has, and it started out looking way better than a lot of what I’ve seen in doing my research. I know that the “flaps” of skin used to create my breasts will settle into the landscape of my battle-scarred chest. I suspect that some day I will be more “me” and less “it” when it comes to thinking about how cancer has changed my body. But I’m not there yet, and Dr D listened and counseled me.
He gave me a very good piece of advice. So good that Amy jumped up and wrote it down on a piece of paper towel in the exam room. He said, “Focus your attention on the things you have achieved, because you have achieved a lot, but you still have a ways to go.”
He’s right, of course.
I just don’t tend to think that way. I’m way too busy thinking in the here & now (do I have enough bread to pack the kids’ lunches? Did I move the clothes from the washer to the dryer? It’s Mary’s birthday tomorrow; where’s the card I bought for her 4 months ago?). I need to stop a sec and shift from the here & now and the never-ending “to do” list and think for a moment about how far I’ve come and what I’ve achieved. My “journey” has been far from ordinary, routine. As my nurse-friend Laura says, “Everything that could go wrong did, and you were as far from a textbook case as could be.” True dat.
Two really great things came out of my appointment with Dr D, besides the pep talk and his blessing to have a drink. The first is the end of the Lupron shots. Hooray! I endured a year of that blasted drug, and am thrilled to say adios to it. The needle was huge, the drug was of the ilk that burns like fire upon entering the body, and the side-effects were hideous: hot flashes often enough to power a small city. Sweating more than Leon Lett after his infamous fumble against the Dolphins. Mood swings that make people run and hide from me. Joint pain that sometimes catches my breath. Decreased bone density that I can’t feel but fret about anyway. Bye-bye nastiness. Of course the flip side to being done with Lupron injections for hormone suppression means that I have to get serious about the oophorectomy. Gotta get those ovaries removed for good. As much as hate the idea of yet another surgery and yet another recovery, I am of the “slash & burn” mentality when it comes to cancer. Get ‘em out so they can’t cause any trouble.
Item #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my life easier and saved my already-floppy veins from being blown out once and for all. It’s allowed me to endure so many needle sticks that a 20-gauger no longer makes my palms sweat. But I won’t miss it. I will happily bid adieu to the titanium disk sewn into my jugular. I will not miss the monthly flushes with saline and Heparin. I will keep it, though, as a souvenir. As a reminder of all that I’ve achieved. Of all that I’ve endured. Of all the crap that was flung at me but how little of it stuck.
What do you call a recurring nightmare that happens while you’re awake? Recurring daymare doesn’t sound right at all. Whatever it’s called, I’ve been having it. Guys, you may want to click on over to espn.com or continue searching for pics of Minka Kelly in a bikini because I’m fixin’ to talk about some lady stuff.
This blog has been my outlet for all things cancer-related: the good, the bad, and the ugly. Sadly, the latter two categories way outweigh the first in this trilogy, but that’s when you grit your teeth and plow right through it. There’s been much discussion on this blog about highly personal things, and lots of talk about boobs (sorry, guys; not the Minka Kelly type of talk). Such discussion is brutally honest and at times of the sort that makes people uncomfortable, but that’s how I roll. I could no more ignore the elephant in the room than root for the Yankees (dang, even the thought of that makes me sick to my stomach). I never learned how to sweep things under the rug or look the other way, and I’m not one bit sorry.
So, with the disclaimer out of the way, it’s on to the recurring daymare. Several times in the last few days I’ve had a moment of sheer panic when I think I’ve started my period. Not sheer panic in the sense of it’s gonna be a gusher and I’m in my white tennis skirt far, far away from any feminine hygiene products. No, this sheer panic is in the form of a stark realization that if I were to start my period again, after 17 months, that would signal the end of my chemically-induced menopause.
And that would be bad. Very bad.
Not that I love menopause, not by a long shot. I especially do not love menopause at the age of 42. Going through the ‘pause a decade early is cruel and unusual on many fronts: it’s yet another reminder of having been diagnosed with a potentially deadly disease while my kids were still in grade school; it sucks to be enduring it years before my peers; and it forces me to face all the unpleasantries of how breast cancer can destroy one’s self-confidence and body image at a time in which one should be living large in the prime of one’s life, to name of few.
But menopause for me means that the hormone suppression — which comes at quite a cost — is working. It means that the hormones that fueled my cancer are gone. There one day, gone the next. Hormone suppression causes me a litany of problems, but it means instant famine for my cancer.
If I were to start my period, it would be a red flag (pun intended) that my ovaries were pumping out the hormones that cause a technically-she-should-still-be-fertile woman to start her cycle. And while I’d love to return to that carefree time in which my ovaries pumped out whatever hormones necessary to keep me from being the withered husk of a woman that cancer tries to make me, it would be very bad news. I’m already on the short list at my doctors’ offices (plural) for being a troublemaker. The last thing I need is to ring my onco-crush, as Trevor calls him, to say, “Guess what? The ‘take one pill daily for five years’ Tamoxifen and the quarterly shots of Lupron aren’t working anymore.” I think that sweet man might have a heart attack. And I’d never hear the end of it from Dr S, who not-so-secretly thinks I invent symptoms to have a reason to go see my onco-crush, all the while shaking his head and muttering about what anyone could possibly see in a young, handsome, fit Peruvian doctor when there’s a much-older, much wiser plastic surgeon to adore.
This latest daymare is a perfect example of the PTSD that cancer patients endure. I imagine there are some cancer patients out there in this big, wide world who finish treatment and declare that chapter of their life closed, never to be stressed over or fretted upon again. I’m clearly not one of them. I hear tell that one day, this nasty cancer business won’t be in my forethoughts all the time but will be demoted to a back-burner status. I’m not there yet, but I’m hopeful. For now, though, the thoughts are there, and the fears are many. Things that used to scare me don’t scare me anymore (namely needles, but having been poked so many times I’m over it. In fact, I gave myself a shot the other day, like it was a normal, everyday event) but things I never knew were scary now scare the fool outta me. If that makes any sense.
The other day I was chatting with a friend in the parking lot in the brutal and ongoing Texas sun, and suddenly I felt something that flipped the switch from “I’m a normal person having a normal, non-cancer-related conversation with a friend” to full-blown panic, just like that. The feeling? Something wet was collecting, not quite pooling but definitely collecting, under my newly constructed right breast, site of the infection of the year that turned an average bilateral mastectomy recovery into a shitstorm, for lack of a better word.
I went on with my normal, not-cancer-related conversation, hopefully as if nothing was wrong, but was seriously panicked inside. Visions of hospital beds filled my head; the hospital smell that I dread more than words can say infiltrated my nose; and I could almost feel the 20-gauge needle puncturing my skin to access my port so the army of big-gun antibiotics could get in and fight the enemy. In my mind, I had been admitted and diagnosed with a recurrence of that damned infection within the span of a couple of heartbeats. In reality, it was a simple bead of sweat.
Ahh, yes, a simple bead of sweat. Such a common character in the land of perpetual sun, magnified a few million times by standing on a blacktop surface. A simple, everyday occurrence in the life of millions of Texans and citizens of other hot (but not as awesome) states in this fine country. One little bead of sweat that most people don’t even notice had the power to instantly transport me back to the hell that is included, free of charge, with a post-mastectomy infection.
Somebody wake me from this daymare.
Lyle Lovett said it best:
I understand too little too late
I realize there are things you say and do
You can never take back
But what would you be if you didn’t even try
You have to try
So after a lot of thought
I’d like to reconsider
If it’s not too late
Make it a cheeseburger.”
I don’t eat cheeseburgers, or any burgers, but I love Lyle Lovett, and his clever and playful lyrics have been running through my head all day as I contemplated my latest visit to my cutie-pie oncologist. Last time I saw him, we discussed whether I need yet another surgery, to remove my ovaries. See, those little suckers pump out estrogen, and estrogen happens to be fuel for the type I cancer I had. So the theory is this: cut off the fuel, starve the cancer and ensure it has nothing with which to reconvene. Since I wasn’t physically well enough to undergo the oophorectomy because of the post-mastectomy infection, we put that surgery on hold, but in the meantime I began getting a shot of Lupron once every 3 months. Lupron essentially does the same thing as removing the ovaries, which is to shut off the supply of estrogen.
I thought the plan was set: continue the Lupron shots until I was deemed well enough to undergo the oophorectomy, which would likely be in the fall of this year. Get the kids back to school, recover from the August 17th reconstruction revision, and get rid of the ovaries. I like having a plan. I like sticking with a plan. I’m not a fan of changing the plan.
Today, Dr Cutie Pie said he didn’t think I needed to keep getting the Lupron. I’ve been getting the injections for nearly a year now, so even though I was scheduled to get one today and was planning on getting one today, he thought I was done. The plan had changed.
Granted, I had complained to him about the major side-effects of Lupron: hot flashes and sweating like a pig in heat. It’s summertime in Houston. Not just regular old hot-as-Hell summertime in Houston, either, but record heat and record drought summertime. I can tell you with 100 percent certainty that hot flashes and Houston summertime are a wretched combination.
Do I think the hot flashes and sweating like a pig in heat are sound enough reasons to discontinue the current path of hormonal suppression? No. I haven’t murdered anyone (yet). Dr CP said there’s really not that much difference between hormonal suppression from Tamoxifen alone and suppression supplemented even further with Lupron. A year of Lupron injections seemed to be enough, in his opinion. The daily Tamoxifen will go on, though.
Disclaimer: I did not beg, whine, or persuade him to make that decision. Not like I did last summer with Dr S when trying to sway him to release me from yet another hospitalization or disconnect me from the dreaded wound vacuum, Sucky. I did not employ any such tactic with Dr CP today. He came up with the idea to cease & desist all on his own.
He also said maybe that oophorectomy isn’t necessary, either. While I’m completely in favor of eschewing yet another surgery, my gut instinct tells me to rip those ovaries out (gently, though, and with lots & lots of morphine).
Life is so uncertain. What’s the right choice? How does one make such a decision? Stop the Lupron or not? Pursue the oophorectomy or count my blessings that I won’t need another surgery? Where’s the Great and Powerful Oz to tell me what to do?
That’s the problem with cancer. One of the many problems. Big-ass decisions need to be made; life-and-death decisions. And while there’s research aplenty and resources available, there’s no clear answer. I like clear answers. And unchanged plans. Neither of which prevails in one’s “cancer journey.”
Nonetheless, we moseyed along through the rest of the check-up with the usual and quite popular assertions from Dr CP that my cancer is not coming back. I like that part. He says this at every visit, and I really like hearing it. He told me that my reconstructed chest looks fantastic, and I really like hearing that (even though I think he’s shining me on, because there is definitely some tweaking and fine-tuning that needs to be done). I still like that he says it, though, even if he’s shining me on.
We chitty-chatted about his new baby, my tennis game, and other pleasantries. He said he’s started playing tennis and is thinking about taking some lessons. When he told me he plays once a week, I told him he’ll never get better that way; it’s not often enough. He got all puffed up and said it’s enough for him because there’s such a thing as talent.
In the immortal words of Steve Martin, “Well, excuuuuuuuuuuuuse me!”
He even strutted down the hallway a bit, then turned to say something about how he’ll be ready in about 6 months to kick my butt on the tennis court. I said, maybe in about 60 years.
How on Earth do I manage to find such cocky doctors?????
We parted ways, him to daydream about beating me in tennis while I headed to the infusion room to get my port flushed. For the last time. Ever.
Yipee! That makes me very, very happy. I’ll get my port removed next month, when Dr S does my reconstruction revision. Can’t wait to bid adieu to that little guy (the port, not Dr S).
But while in the infusion room, I started to second-guess the decision to stop taking the Lupron shots. It didn’t feel right to me. The instant-gratification-girl inside me said, “Hell, yes, let’s forego the shot — that sucker hurts and leaves me bruised for weeks.” But the more-measured-approach-taking girl inside me said something doesn’t seem right with this decision. What’s the harm in continuing the Lupron therapy (besides the obvious, 20-gauge needle harm, that is, and the hot flashes and sweating like a pig in heat harm)?
Dr CP walked by a few minutes later, as I was discussing the pro’s and con’s with my patient advocate extraordinaire, Amy Hoover, and we grabbed him to say I’m not sure about the Lupron decision. He listened intently as we reviewed the pro’s and con’s and said there’s no harm in getting the shot. So I got the shot. Still not sure if it’s the right choice. No idea if it’s the right decision. My gut says yes, and my gut usually is right. However, the fact that it took 3–count ‘em–3 tries to get the shot makes me wonder. The needle went in, but the Lupron wouldn’t go. Ow! 3 needle sticks with a 20-gauge needle could easily make a girl question her decision to question her decision. But, as Lyle Lovett says, “Life is so uncertain.”