Girl Interrupted

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I feel a little guilty writing this post. Many of the other entries I’ve read tonight have been about recovery. About new beginnings, rediscovering the joys of friends and work, and just getting back to normal after the long battle with breast cancer. I feel like I’m supposed to capitalize somehow on the life-changing experience that I’ve had. But lately I’m just stuck.

Physically, I’m on track. I eat pretty well. I exercise several times per week. I take all the right supplements. But emotionally, I’m doing the exact same things that made me unhappy, and angry, and resentful. I’m an intelligent person. I just can’t seem to figure out how to change things that should have been changed long ago. And I know that all of those bottled up emotions played a role in my illness.

I think a big part of my hesitation in acting is that I no longer trust myself to have a valid feeling. Thanks to the hormonal upheaval of chemo, my mood bounces around like a ping-pong ball from one day to the next. I swear I wake up each morning not knowing who will show up, the easygoing,funny, optimistic girl I used to be or the down-in-the-dumps menopausal hag who would rather live in a cave with tissues and sad songs.

While I am exaggerating my mood swings, you can see how difficult and frightening it would be to make any life-changing decisions in this turmoil. “Did I decide that because I was hormonally imbalanced that week, or did I really feel it was the best thing?”.

I actually picked up a prescription for an anti-depressant today. The last time I took an SSRI for post-partum “blues”, it took me six years to extricate myself from the grip it had on me. Not to mention I gained 25 pounds that wouldn’t budge no matter what. I didn’t lose that weight until I quit taking the magic pill. So trust me when I say that this is not an exciting prospect, and I’m not sure I’ll actually do it. The optimist in me still has hope that another solution will appear.

The kicker of the whole situation is that I know exactly what the problem is. And it isn’t depression. It’s lack of estrogen. Estrogen stimulates serotonin receptors in the brain and has actually been used successfully as an anti-depressant by itself. The one thing that would really help me is forbidden. What a cruel dilemma.

Intuitively, however, I do realize that there are certain problems which existed long before I was hormonally challenged. Relationships that are either one-sided or emotionally stunted, a job that drains my energy, a strong penchant for people-pleasing…not exactly a recipe for health. I don’t know why it’s so difficult to change the things we know are wrong. Why is it so terrifying to take a leap of faith? Sometimes it seems that we’d rather live for decades in familiar unhappiness than to risk the pain of the unknown.

So, while I may be doing “all the right things” to prevent a cancer recurrence, in many ways I feel that I’m almost inviting it by default. I need to find the courage, somewhere, to stand up for myself and be fully alive, even if it means facing those demons that I’ve been avoiding for so long. But who knows, next week I might change my mind.

 

 

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Well, I’ll Be Damned, She’s Back!

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I never thought I’d say that. The doctors seemed so certain, case closed, seen it a million times before. But that just goes to show, my body doesn’t fit  neatly into a mold created by modern medicine. She plays by her own rules, always has. And just when I get used to the idea of “what is supposed to happen now”, the agenda changes. But I should have known better. My body is a fighter.

One of the perils (or perks, depending on your point of view) of getting invasive breast cancer in your forties is the near certainty that menopause will follow chemotherapy. As my oncologist told me, “Don’t worry, your ovaries will be dead soon.” I fired him not long after that comment, oh, and the sepsis that he thought could wait until morning.

For a while, he was right. My last cycle was in June of 2013, before my lovely tango with Taxol began in July. My ovaries went into hiding like two frightened puppies under a blanket during a fierce thunderstorm. Except for a brief period earlier this year that I chalked up to experimenting with some hormones (bad girl!), I have been effectively menopausal for nearly a year. Hot flashes, mood swings, fatigue, weight gain, you name it, I’ve experienced it.

So, imagine my surprise when my monthly visitor came last Saturday. I had been in a horrible mood the week before, and I felt very crampy and bloated, but I just thought I was receiving yet more exciting menopause bonus gifts. Then I worried. One thing that breast cancer steals is your ability to just brush things off. Once active treatment ends, every pain, every headache, and every symptom that once would have been “normal” creates a small sense of panic.

Added to my fear was the fact that I’ve been using Estriol cream to offset the unpleasant sexual side effects of low estrogen (which works very well, by the way). This is not exactly sanctioned by my oncologist. Ok, not at all. I’ve done a lot of research, and Estriol doesn’t seem to cause growth of the uterine lining the way estradiol does, but there are always exceptions. So, as the spotting lingered on, my mind went to the possibility of uterine cancer. I called my gynecologist.

I had my appointment this morning with Dr. M, another wonderful doctor that I’ve been lucky enough to find. Just to let you know how unusual she is, she once called me from her cell phone on vacation to warn me against seeing the breast surgeon that I had originally chosen. It turned out that she had done her residency under him and saw him cut corners that put patients lives in jeopardy. No one would ever have known this because he is incredibly charming and prays with his patients, and they adore him. I can’t tell you what that meant to me.

Dr. M wasn’t particularly worried. She smiled at me and said, “I think you’re just menstruating.”

“But the oncologist told me I was done.”

“They say that all the time, but I see women get their periods back at your age. Now you really need to think about contraception.”

“Huh?” In the space of five minutes, I went from a menopausal crone to a woman with a cycle who needs to worry about getting pregnant. It must be the hair. When I went to Florida last month, I saw a fabulous hairstylist who erased my silver locks and made me a bithcin’ blonde. My body must have just taken notice of this turn of events and decided that we’re younger now.

Dr. M didn’t flinch when I told her about the Estriol. She said that she didn’t think that would cause bleeding using it only twice per week, but we’re waiting to see what happens. She told me that if the cycles didn’t have a pattern, or the spotting didn’t stop soon, to give her a call and she would order an ultrasound.

I guess I’ll have to take back all of the feminine products I moved to my daughter’s bathroom months ago. I know I should be freaking out that I have enough estrogen to restart a menstrual cycle, but in a strange way, I’m kind of tickled. My body is rebelling against the months of insults that have been hurled at it and trying to regain balance. In my opinion, that’s pretty awesome.

The Doctor Said “Eek!”

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I had my 3 month check-up with the oncologist this week. I’ve been dreading this appointment like a case of shingles for weeks. Why? Let’s see. Not only did I not start my Tamoxifen like a good girl in January, but I have been doing the polar opposite of what was recommended. I moved the appointment back 3 weeks to stall, in the guise of waiting for my BRCA genetic testing results (negative) to come back, but the truth is I would have told him anything to delay the inevitable. “I can’t come in right now because I’m recovering from ebola”, etc.

So, my oncologist has been in sweet denial for the past 3 months, thinking that I’m a compliant patient, resting comfortably at night with the knowledge that he is in charge. Let’s just say I burst that bubble with a pitchfork on Wednesday.

He walked in the room after knocking gently. He greeted me warmly and asked how I’d been. “Fine, really well”, I offered, almost sheepishly. I thought that maybe my fears had been unfounded, maybe he was just going to check in and leave it at that, assuming everything was going as planned. It wasn’t to be.

“Are you on Tamoxifen?” he asked as he sat down and flipped open my chart.

“Oh, crap, here we go!” I thought, the red heat of shame traveling steadily up my chest to my neck.

“No…I…decided not to take it.” There, it was out.

He looked at me for a minute, not quite sure how to respond. “What happened?”

“Well, I’ve done a ton of research and reading about it, and I don’t see anything good. I know four people who’ve had to quit taking it because they felt that they would rather live 2 years happy than live with the side effects.” I was scanning his face for a reaction.

“I see. So, did you even try it?”

I felt at this point that I had to offer up something to make my case seem stronger and more logical, so I began to spill the beans.

“Ok, Dr. A, I like you a lot and I respect you as a person, so I’m going to tell you something, but I’ll spare you all the details because I don’t want you to have a stroke.” His eyes widened and he sat back in his chair. “I’ve been seeing that integrative MD that I told you about.” He nodded. “We’ve been doing a little experimenting.” Deep breath. “He put me on some bioidentical testosterone and gave me Arimidex to keep it from turning to estrogen in my body. After 5 days on the Arimidex, I was in such a pit of depression that I stopped taking it. Now, that pretty much tells me how the lack of estrogen is going to affect me, no matter what drug we use.”

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Dr. A sat up straighter and looked in my eyes. “Eek!” I thought that probably wasn’t because he saw a mouse out of the corner of his eye. “First of all, I had no intention of putting you on Arimidex because that is for post-menopausal women. There is no guarantee at this point that you’ll stay that way. I’ve seen women older than you resume their cycles after chemo. We just don’t know how the aromatase inhibitors effect pre-menopausal ovaries.”

He went on. “So I don’t know why he would put you on Arimidex; well, I understand it biochemically, but it’s not the path I think is best for you. Second, I would feel a lot better about your decision if you had tried the Tamoxifen and told me that you hate it and absolutely can’t take it. Try it for 10 days or 2 weeks. But don’t assume that you know how it will affect you. If you tell me you absolutely won’t take it, then we’ll figure it out and monitor you more closely, but give it a shot.”

Uggghhh! Dammit, why does he have to always pull out the logic? I tried another tactic. “The side effects aren’t my only worry here. I honestly don’t think long-term estrogen deprivation is healthy. I think everyone forgets that estrogen does some good things, like protect your bones and keep your brain functioning, not to mention allow you to have sex without pain.”

I could see that he understood my dilemma and really did sympathize. He almost teared up as he said something about his mom having osteoporosis and how he worried about her falling. But, no dice. “I agree. And if you didn’t have this”, he pointed to my chart, “we’d be in a totally different discussion. But we have to weigh the risks in your case.” He got really quiet for a minute and I could see him trying to find a way to frame his next sentence delicately. “I don’t want to sound crude”, he went on, “but the long-term side effects of estrogen deprivation will be kind of a moot point if this comes back, and I feel like the window of opportunity for the Tamoxifen to work is closing.”

Ouch! After an hour of gentle prodding, he finally wore me down. “Ok, Dr. A. I’ll try it just because I like you.”

“Don’t do it for me. Do it for you. I’m your advocate here, and I want you to live a long time.”

So, here I am again, doubting my choices and in turmoil. Now tell me how good that is for healing. I almost want to fill the prescription so I won’t disappoint the doctor, with his big pleading puppy dog eyes. I have an appointment, meanwhile, with the hormone doctor next week, and boy do we have a lot to discuss! I think my bottom line for him is “If this were your wife, would you feel comfortable making these same recommendations?” Waivers and consent forms aside.

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But, I have made one decision. I am absolutely madly and deeply in love with my oncologist. I have never met a man with his combination of intelligence, honesty, and compassion. And I have never met a doctor who wears his heart on his sleeve. I’ve decided that we’ll leave our respective spouses and make a new life together once the boobs are complete. They’ll just have to understand that fate has stepped in. Phew! At least I’m sure about something:)

Hormone Update

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It’s been almost a month since I saw the integrative MD and received the forbidden hormone prescription, hands trembling. I felt such mixed emotions that day. On one hand, I knew from experience how wonderful estrogen makes me feel…enthusiastic, outgoing, sexual, and just happy. On the other hand, I was acutely aware that I could be signing my own death warrant.

My first prescription (yes, there have been several) was for a vaginal cream containing mostly estriol along with smaller amounts of estradiol, testosterone and progesterone. Ironically, the day before I started it, I felt fantabulous! I was in a great mood, full of energy. Then I used the cream. At night it gave me hot flashes, and when I woke up I felt slightly hung over, tired, and generally blah.

I recognized my symptoms instantly as the “progesterone doldrums”. I’ve tried progesterone several times before, and I just don’t tolerate it well. I called the doctor’s office to get the prescription tweaked. The second attempt had no estriol (it gives me hot flashes), half the progesterone, and testosterone. No dice. My libido was definitely improved by the testosterone, but the progesterone was still too much.

After another call to the doctor, he decided to separate out the progesterone so I could adjust the dose as needed. The estradiol and testosterone are still combined. I’m supposed to use the cream once at night, but I’ve had to experiment because it seems that I need a dose in the daytime as well. I’ve tried splitting it in half and using it twice, but that makes each dose too small to be effective.

Meanwhile, taking hormones has been causing a lot of stress. I’m so torn about the risks vs the benefits. There are several studies showing that breast cancer survivors who take hormones are at no greater risk of recurrence and actually have better survival than those who don’t. But I can hear my oncologist’s voice in my head, telling me that I’m making a really bad decision.

So what are we to do, the breast cancer brigade? Do we fade quietly into the background with painful joints, weakened hearts, mushy brains and zero sexuality? Or do we forge an unpopular path less traveled and hope for the best, armed with our own research? Yet again, the choices are impossible.

As for my hormonal foray, it has proved to be much more difficult than I was hoping. As I write this, I’m in the middle of a hot flash, perhaps caused by the Arimidex I took an hour ago per my new doctor’s instructions. He’s willing to give me hormones, but he doesn’t want my body producing any extra or the wrong kinds.

And truthfully, I can’t say that I feel better emotionally, which was my main goal in starting this journey. I’m up and down. Saturday I felt on top of the world, but the past two days I’ve been quiet and withdrawn. And my chin is breaking out just a little, maybe from the testosterone.

So, let’s review. I was willing to take a huge risk with hormones for the trade-off of having brighter moods, less fatigue, a sex drive, a clearer mind and protection for my bones, joints and heart. And what have I accomplished? Sex drive…check.  Clearer mind…check.  Less fatigue..sometimes. Brighter mood…still quite unpredictable and fleeting. And that last one was at the top of my wish list. I’m just tired of feeling blah.

Wednesday I go to get my hormone levels checked. I started to cancel since I haven’t been on a steady dose over these past few weeks. But then I decided that it might be a good idea to get a snapshot of where I am for future comparisons.

At this point I’m not feeling enough of a benefit to justify the risk, and the thought of taking Arimidex goes against my gut. I’ll give this expensive experiment a little more time before I make a final decision. At $55 per prescription, I’m about “tweaked” out.