Wants and Desires, Preferences and Priorities

[Jewellya]

I’m sitting here, thoroughly exhausted, trying to burn the hour between when I put my daughter to bed and when I get her back up to potty—without falling asleep myself. I will then take a dose of Tylenol PM or, no matter how exhausted I think I am, I will not fall asleep until 1 or 2 AM.  

Today I met with the fertility specialist to discuss my “options”. He had called me yesterday after meeting with my oncologist and various other specialists during the conference held each Tuesday to discuss case files. This panel of experts talked about the 31 year old with aggressive breast cancer that knocked her over out of the blue, that may or may not be genetic. He called me. Wanted to meet today. I feel the timetable speeding up.

When I had my meltdown with the oncologist regarding fertility after chemo, she did what she could do to quell my worries, but really, if “putting your ovaries to sleep” was in any way comparable to egg harvesting, then they wouldn’t be harvesting the eggs of very many cancer patients. I do not like the idea of egg harvesting.

The problem is, I’m operating on the field of probabilities and statistics, of which I have no hard numbers—mostly because the numbers are irrelevant. There are “plenty” of women who have gone through chemo at some point in their life and have gone on to get pregnant will little or no trouble. There are also “plenty” of women who are as barren as a desert dune.

Has to do with the uncertain amount of eggs each woman is born with. There is currently no way to count how many rounds any one of us has left in the chamber. And for the women who go through chemo with no preservation measures taken, the ovaries absorb the drugs at much higher levels than if they were rendered dormant; the progressive saturation gradually kills the eggs.

But not all of them, for eggs or for women. There are about a dozen different variations of chemotherapy protocols, what drugs are used when and for how long. The longer a woman is in treatment, the more ovaries will absorb, the more eggs will die off.

I am in an “aggressive” treatment. Where many get two or three drugs, I’m getting four. And this is going to be a rough ride for six months. If I have a LOT of eggs, I could come out of it ok…provided my cycle gets back in check, because that’s the first step. If I have an average to lesser number of eggs, the chances are quite slim. That’s if I do nothing.

If I get the drug that will chemically throw me into menopause, then my ovaries would have to be woken back up with much the severity as a post-menopausal woman attempting to do the same. The cells themselves are younger, so that is on my side, but chemically, it’s not much different.

[Pause. It’s been an hour, time to check on daughter.]

These are the options if I really-truly have no desire to pursue egg harvesting. Things got a little emotional as I saw the writing on the walls, as they closed in around me.

Getting pregnant in a petri dish conjures a few images aside from the distraught 38 year olds who’ve tried and tried and tried (and are now completely ignored by society-at-large). For whatever reason, it seems very Hollywood. Perhaps due to the unusual percentage of actors birthing twins who swear they were conceived naturally.

You know what’s also Hollywood? Fake boobs, yet somehow I wrapped my head around that.

It’s also noticeably in the realm of reality television and any other fame whores not fortunate enough to sign away their family to a cable network. This is the 21st century equivalent to gladiator games, where we don’t have to stage the deaths of prisoners and slaves, because watching a long, slow, self-induced train wreck is so much more fun. The more children present to fuel the carnage, the better.

Finally, there are the twenty-somethings with no medical problems who have bought into the fertility industry’s propagated myths that if you have been trying for at least six, even three months and have not conceived then their intervention is necessary.

Because now that we can delay conception, we also must crave children on-demand.

Why do we act as if life is a cable show?

Because it is. These are the channels as I scroll through the menu: Looking to the healthy twenty-somethings, I allow myself self-righteous contempt. To the attention seekers, I allow a mixed bag of disgust for the parents, pity for the children, and anger to the system and society that thinks this is ok. To the actors, I’d give a passing shrug of indifference, at most an eye roll for the pretense. To the 38 year olds, three weeks ago merely a footnote in my worldview, I suppose I’m right there with you now. Sorry? Be friends?

Except the difference is, I already have a child. So who the hell am I to be getting chummy with those who’ve struggled?

"I already have mine. I wonder if I'm even allowed!" I spoke through tears, my frayed nerves failing me once again.  And I don’t even have a partner whose desires would help me make a decision.

After time for collection and contemplation, I feel that if the hypothetical-he wanted to be a Daddy, then I would do it for him. But not for him, but because I would want for him to be a Daddy too. He would not be the hypothetical-he of which I speak if I did not want for him, on his behalf.

But he is not here, not right now. Only me and my dreams, my future.

What do I really want for me and what am I willing to go through to get what I want?

By my standards, egg harvesting is an unnecessary expense and will require an additional surgical procedure. It is extravagant and beyond the scope of my relatively simple, Spartan existence where a splurge is new panties on sale at Kohl’s with a coupon, despite my ability to do more for myself.

It is also entirely my choice separate from any associations to celebrities or to pseudo-celebrities or to the thoughtless or to those of whom we have thought less.

Am I willing to venture down a non-preferred path to potentially secure a priority which may not even come to fruition?

Am I setting myself up for heartache? To be a desperate 35 year old hearing the very real clock ticking as the years and men fly past her? (aside: references to my good-looking avatar are not appreciated at the moment)

But is this want a priority or just a preference?

 

 

After my fertility consultation, I went for a standard eye exam to re-up my prescriptions. I knew this needed to happen soon as I watch the timetable speed up around me. Funny thing is that I really enjoyed it since for the first time in a month, I spoke to a doctor and felt normal. I have vision insurance this time around and for the first time in my life I picked out frames that I liked without heavily considering what I could afford. They run a special on a second pair, so I opted for designer frames in addition to a pair with subtlety. My balance after insurance for two pairs of glasses was 288.92. “Wow! You have great insurance!” said the rep. Her expression sounded very authentic, but I was unconvinced. It is her job to make me secure in my purchase. I hesitated. I really didn’t need the Guess frames, did I? Yes I did. For the first time in my life, I need to enjoy the things that I want for no other reason than because I want them.

 

I want for him to be a Daddy, whoever he is. I would do it because I want to, for no other reason than because I want to.

[JMac1949 Memories]

Don't sweat the small stuff and take care of yourself... from what I've been reading you've got your head on pretty straight and you're dealing with the Big C as best you can.  Do what you need to do to stay alive and get what you need...

[greenheron]

Good morning. Exchanging secret handshake.  Jeeze.  I'm so sorry. You are dicovering how much cancer steals from you. A lot.  A whole lot.  It used to feel like every day they'd arrive to take away something else I'd assumed was mine. Day by day, everything I knew and held in my world was disappearing.  Yet, this will probably be of zero comfort to you now, what they leave you with is a clear view of your essential self, what you were born with, which is pretty remarkable. You discover a woman you had no idea was there. 

You may have guessed that I chose a mastectomy.  The first time I viewed the results of my surgery, my instant reaction was the lost memory of how I had once appeared as a little girl. It was both a loss and a gain. As children, we encounter the world with openness and curiosity, less concern with the future, more absorbed with momentary sadness and delight. We cried and laughed so easily then.  That little girl reappears, physically, and emotionally.

Will the ovary stopping drug will be Lupron, so you can take your aromatase inhibitor? Lupron is no picnic. But it is the same fertility drug they give to women trying to get pregnant. It stops egg production, then it resumes, and there are eggs by the gazillions. Well, not gazillions, but a lot. I know they probably told you all this.  Anyway, as a three year Lupron-taker, when they stopped, I ovulated like crazy for about six months and was as fertile apparently as a teenager.

Yes, you are a young woman, and breast cancer is usually aggressive in young women, but you caught it very early. I have two friends, older than I am who had breast cancer as young women.  You're at M.D. Andersen.  There is no better place. 

I cried here for you, knowing how it feels to lose this stuff.  It is hard.  No way to sugar coat that. We used to say "life is short" and really, we were paying lip service to that.  Now we know.  Despite everything, you find hope, because it is always there.  Some days harder to see than others.  You just had a rough appointment.  Maybe some Retail Treatment could be adminstered.  Or Nature Treatment, or whatever treatment you know will soothe you.  Oy.  That bad sleep thing came rushing back when you described it.

One of the benefits of being treated at a major cancer center was that I was assigned a  cancer counselor/therapist as a member of my treatment team: surgeon, radiologist, oncologist, and Janet. We met weekly, not to talk about things my mother did or did not do when I was twelve, but cancer, all cancer. She was my rock during that time. Maybe you have this available to you as well? 

I am thinking of you.

[greenheron]

P.S.  I just re-read, and wow, I had a lot to say!  Sorry, if it was too much.  Now that I have apologized, can I say one more thing? 

Good job, telling us that avatar comments are not appreciated.  Atta girl!

Okay, that's it. ;-)

[Jewellya]

No GH, it good that you say it, thank you. because no, I was not informed of the "new adolescence" that occurs when the Lupron is stopped. I was told that's it essentially a gamble--he used that word--without knowing the odds governing one decision or the other--except egg harvesting. I was told that while the eggs are spared with Lupron, the trends show that it's more difficult to regain fertility eventhough menses resumes fairly easily.

You may be a bucker of trends, or he may be a businessman as well as a doctor.

[greenheron]

He is right about Lupron. It is an extraordinarily powerful drug, and a roller coaster ride. All of them are. You buy your ticket and get in the little car, and off you go.

Thing is it's the f*cking Lupron that allows you take the aromatase inhibitor, and those are proven to up survival stats by as much as 43%. Saying no to the Lupron is saying no to Aromasin. That was a rough decision for me too. There was a study completed on aromatase inhibitors when I was on tamoxifen, into my third year, and after the study was published, they took every woman off Tamoxifen after two years, and put them on aromasin for the last years of their five, because the study results were so dramatic.  Even the placebo study women got taken off and given aromatase inhibitors.  That was ten years ago, and they have oodles more data since that confirms.  Last I read the they are thinking five years could be extended.

All this stuff is horrible to consider. It still feels weird, to talk about it like where we might decide to go for dinner. Not to mention how cool and detached the medical folks are.  I'm a college prof, and sometime think about what it might be like if every one of my students had a cancer diagnosis.  I'd have to get detached fast.  So do they.

[Kathy Knechtges]

All the best to your. That is a hard decision. Things usually work out for the best.

[Jewellya]

GH...

OK, you made have to look up shit now, because while i recognized the word 'aromatase' I did not think that or anything like it was on my list of drugs. 

first 12 weeks I'm taking Taxol, intravenously, once a week - its made from the bark of a tropical tree. Most of the side effects from Taxol are pretty mild and tolerable. but "infertility due to ovarian damage" is listed on Wikipedia in a manner that leads me to believe it's just as common as loss of appitite. leuprolide, or Lupron, is listed as the main counter-treatment to protect the ovaries. It does not indicate that it is essential for the effectiveness of the drug itself. I can see why the aromatase inhibitor would be dependant upon it, because the whole point of Aromasin is to stop production of hormones. My doctor doesn't much care about my hormone levels, because they're going after the cancer cells directly. Taxol's main purpose is to block cell division.

According to my doctor, if I take to the Taxol well, my energy levels will remain steady, with a gradual decrease throughout the treatment. So it won't knock me over, but a "lazy day" may be all I can handle by week 12.

the last 12 of my 24 week regimen is the FAC cocktail. 5-Fluoroacil, Adriamycin, and Cyclophosphamide. I will take a dose of the cocktail once every three weeks. shortly after treatment, maybe the next day, my energy level will drop off a cliff for about 36 hours then work its way back to "normal", whatever that may be.

5-Fluoroacil works by inducing cell death and is most effective in rapidly dividing cells. I will also feel it most in my digestive tract. Wikipedia suggests that I alter my diet to eliminate folic acid.

Adriamycin , an anthracycline, is referred to as the "red devil". it's red, will turn my urine red (harmless), cause skins sores, but can also lead to cardiotoxicity (heart damage) at higher doses. It works by blocking the replication of DNA.

Cyclophosphamide's primary purpose is the pursuit of cellular death of certain T cells. Aside from immediate effects nausea and lethargy, it can also cause temporary or even permanant sterility (rarely, says Wiki). The Wiki page is kinda scary taking about problems at higher doses, it's my understanding that my primary concern is allergic reactions due to immunostimulation, which means I will have the lower-dose, more mild effects.

[greenheron]

Listen to you, rolling off the names and descriptors of all those drugs. So frigging sadly, we come to know them, like Coke, Pepsi, Sprite. Your list is the Usual Suspects. Some side effects, most people get, others only a few get, but when reading the list of them, the mind figures it must prepare to experience all. Really, you won't. Reading about it, and doing it is different. While it is without question a sucky experience, once you're in it, and know what it feels like, you deal. The fear factor for me was always before I knew what I'd get. What  my mind imagined was always worse than the reality.

Oncology nurses know many tricks and tactics and will share them with you. So will other women. There are a few books that are popular with women dealing with cancer...my sister loved the one about wearing lipstick to chemo, I forget the title. Those didn't work so much for me.  We're all different. As you move through this experience, you'll figure out what is helpful and what isn't.

As an artist, I was told over and over that I'd deal with cancer in my art; it was a given that my art would focus on cancer.  It never did. In fact, cancer froze me for a period of time.  I couldn't bring myself to work in the studio at all. Women will have differing experiences and advice...don't listen to me if it doesn't ring true for you!  I was 45, you're 30.  As a young woman, it might be helpful to connect with a young womens group. A colleague at work did that, and they understand and support one another on the mother issue particularly...being a mom with cancer, fertility, the same concerns you have. She is also in an artists group where the members make a painting a day while in treatment and discuss.  That would have made me crazy!  The very bottom line is that right now, everything is all about you. Later, things will return to service and caring for others, but for now, everyone serves and cares for you.  Those who can't/don't/won't, need to step back and make room.

[Jewellya]

if your art is your soul made external, i can see why you would want to protect it and keep away that with which you don't wish to identify yourself.

at my first oncology visit i saw a few "poster children" (not exactly children, mind you) for breast cancer, with their pink this-and-that. Made me wonder what the woman DID, or was having  cancer the greatest validation of her life?

[greenheron]

Ugh.  Pink.  Pink-washing. People do what they need to get through though, and I respect that. Corporate pink parasites, no respect though. October is the month so many of us hate.