i am a butterfly…

Posts Tagged ‘infertility’

Me: I think I need to see a grief counselor. That would help.
Him: Yeah, that’s a good idea.
Me: And maybe if I’m not sad all the time, I’ll be less bitchy.
Him: I’ll make you an appointment!

Scott and I were in the car on Saturday and the topic of our blogs came up. He noted how my blog has changed quite a bit over the last two years, and that can’t be denied.

One of the big things, of course, is that I don’t post here nearly as often as I used to. Twitter has been a huge factor in that, but my posting rate was dropping off long before I signed up for Twitter. I recently decided to try to remedy the Twitter problem, though, by vowing that anything that would take more than two tweets to say should be posted on the blog, instead. That’s why I posted the “Conversations with the Old Man” post the other day. I used to post funny little snippets of the day* like that all the time. I’d like to try to do that again, and those things are too long for Twitter.

By far, though, the biggest change in the blog that I see is in the types of things I post. When I started blogging seven years ago, I decided to do it because I felt like I had a little something to say on the subject of this whole infertility thing and that maybe people just might want to hear it. At the very least, I felt like I needed a place to rant and rave and vent and get it all out, because if I didn’t, I was going to explode. And blogging was great for that. Not only did I get a place to dump all the crap out of my head and my heart and my soul, but I found a lot of women who were going through the same thing**, and it was nice to not feel so alone.

As a result of starting off talking about infertility, I was pretty open about body stuff. It was easy then, because the people who read the blog were only my friends inside the computer and I didn’t have to look them in the eye they day after they read all about my cervical mucus. Back then, I would have written for days about how I actually got my period while I was laying a a hospital bed after this last surgery, and gone into gory detail about the nightmare of trying to deal with that during a hospital stay and the humiliation of having to beg a nurse for supplies and how modern hospitals still seem to think it’s 1955 when it comes to girly supplies. But now, a lot of the people who read my blog are people I know in meatspace. If I write about that hospital incident***, the next time I see one of them I won’t be able to look them in the eye because I’ll feel like they’re just thinking about that post.

So that’s the main thing I’ve been struggling with lately when it comes to choosing what to write about. Don’t get me wrong. I absolutely love that the people I know find me interesting enough to come back here to read what I have to say. I’m deeply flattered even if I can’t really figured out why they’d bother. When I see people in person and they say that something I wrote about struck them or made them think about something or strangers come up to me at shows and tell me I have pretty cats, it makes me happy to hear. It’s just that I don’t necessarily want them coming up to me and telling me that they read about my period. You know?

I decided that I’m going to try to balance it. Maybe stick mostly with the nice, fluffy things I’ve been talking about lately like food and knitting and cats and sort of ease people into the old school style of this blog by now and again tossing out a phrase like “egg white cervical mucus.” Just to see what happens.

* Whatever, dude. I  always thought they were funny. Maybe no one else did or does, but I did and do.

** And just about all of them are mothers now, either through adoption or ART, and here I am still stuck in neutral. But that’s a rant for another day.

*** Yeah, yeah. I realized that I basically just DID write about that hospital incident, but in nowhere near the detail I would have gone into it a couple of years ago. People, I can write pages and pages about my period if I get going. This? This is nothing.

All throughout this whole infertility thing, one thing that I could count on is that my cycle is a predictable 24 days. That’s short, I know, and that shortness is the main reason I was always convinced that my problem is, at least in part, a luteal phase defect. Based on the charting and careful monitoring of cervical mucus* I did back when I thought we could get pregnant without radical medical intervention**, I ovulate around day 12, giving me a 12-day luteal phase. That falls 2 days past being completely not viable, but it’s still short of the “normal” 14 days.

But I digress, with all this luteal phase talk.

The point is, my cycle was regular. It was 24 days, always. However, for the past year or so, I think I’ve entered perimenopause. I feel crampier during PMS, more hormonal, have strange episodes of light bleeding mid-cycle, etc. All things that Dr. Google cheerfully assures me are indicators that my body’s fertile time is winding down.***

As an infertile, perimenopause has been a special kind of hell. Not for the reasons a fertile woman might feel wistful about it. I said goodbye to the idea of myself as a ripe mother goddess years ago. No, it’s a special hell for me because my cycle, previously as dependable as Old Faithful, has become unpredictable. I’m sitting here typing this on day 26 of my cycle.

Day TWENTY-SIX, people.

In the past, in those heady early days of my attempts at reproduction, this would have sent me scrabbling to the supply of pee sticks in the closet. This would have had me laying off the wine as I dreamed of how I would tell my mother of her impending grandmotherhood. Now? The very idea makes me laugh with a hearty ho-ho-ho and a hee-hee-hee. Lay off the wine to protect the fragile life inside me? Unless by “life” you mean the unrelenting heartburn with which I’ve been smitten for the past 3 days, I will ho and hee some more at that idea.

And yet…

And yet there’s that rebellious part of my brain, that tiny little corner of my soul that has somehow managed to avoid being crushed and ground into the dirt that wonders. Is it possible? Could it be?

Then I pour another glass of wine and kick back with the 99.764% of my soul that is jaded and caustic and above all realistic and we laugh at that hopeful sliver and plot its complete destruction.

Yeah, THAT is what sucks about perimenopause.

ETA: And apparently, I’ve talked about this before. At least I’m consistent.

 * If you’re one of the non-infertile readers I get around here, I bet you though you thought you could go through life never having heard the phrase “cervical mucus.” I am hear to help with all sorts of things you never thought you’d hear! You infertile types will just read it and move past without a second thought.

** And apparently, we can’t get pregnant even WITH radical medical intervention.

*** To which I say, “If that was my body’s fertil phase, I expect to be a dried and withered husk by the time I’m 42.”

As of today, yes, I do have 7 years behind me.

It’s hard to believe I’ve been doing this blogging thing for so long. And hard to believe how much things have changed, and how much others have stayed the same. Looking back through the old archives, I know that 7-year-ago me would never have thought that she’d be facing 40 and still not have a child. She certainly never would have believed that she’d have to face the cancer thing and go through so many surgeries.

7 years is a long time, and I feel so much older now. Not so much wiser, but older. In some ways, though, I actually feel younger. 7-year-ago me was a lot more boring. She didn’t go out much, she didn’t drink much, she didn’t have any hobbies. I think that, back then, I was still recovering from my wild early 20’s. I know I was trying to fit into a mold of a person I wasn’t, but when I started the blog, I was starting to come out of that. Over the past 7 years, I’ve discovered a lot about who I really am and don’t try to fight it anymore. For the most part, I like me now a lot better than I liked me then.

I know I don’t post anywhere near as much as I used to, but it’s because I don’t have the same intensity in me that I used to. 7-year-ago me was full of passion and drama and ranting. It’s not that I’ve lost my passion for things, but I’ve mellowed. I’m less likely to invite conflct than I used to be, but more likely to d0 something about the things I’m passionate about. Quietly, instead of yelling about it and fooling myself into thinking I’m accomplishing something.

So happy blogiversary to me. Do I have another 7 years in me? Who knows. But for now, I’m happy to keep going, albeit without any regularity.

That title describes my change in attitude after seeing my old oncologist last Thursday.

To refresh your memory, the other oncologist - Dr. K - said the cancer is back, and he just wanted to remove my remaining ovary and be done with it all. He said the cysts were too big to remove laprascopically. He basically poo-pooed my concerns about surgical menopause at such an early age and my concerns about taking HRT for so long. He was impossible to get information out of and I hated him.

He sent me into a month-long bout of sometimes serious depression, in which I was having a severe existential crisis and spent a lot of time wondering why there was even any point in continuing to live. I felt old. And I felt like a failure as a woman. And I felt scared and alone, because  my doctor didn’t seem to really care about me. I was hiding it fairly well most of the time, but the fact is, I was only getting out of bed in the morning by sheer force of will. I could easily have just spent the past month in bed.

Fast forward to my old oncologist, my original oncologist – Dr. H - whom I saw this past Thursday. He completely disagreed with Dr. K’s diagnosis. He was surprised, at first, to hear that I really didn’t like Dr. K and said that it was Dr. K who originally made him want to go into gyn oncology. I didn’t say it to Dr. H, but that surprised me, because I can’t see Dr. K inspiring anyone.

 When Scott and I walked into Dr. H’s office, he remembered us, even though it’s been 4 years since we last saw him. When we talked about the IVF as part of my medical history with my crappy ovaries, he asked about their success or lackthereof. When I said they were unsuccessful, he said he was sorry. And he was sincere.

r. H doesn’t think the cancer is back. His opinion is that we’re dealing with simple cysts. Non-functioning cysts, but cysts nonetheless. He has some small concerns about the fourth, smallest one, because of that debris, but he concurs with the original sonogram tech that it’s likely just old blood. He also thinks that, unless the biopsy in the OR surprises him and it shows cancer, there’s no reason to take out the ovary. He asked where we were with the IVF with regard to continuing, because he wanted to take that into consideration when he perfomed the surgery.

He cares about preserving my fertility. (Ha ha. Okay, stop laughing at the idea that I have any fertility at all. Seriously. Stop.)

And not just my fertility. He takes my concerns about surgical menopause seriously. We discussed at length the studies about prolonged HRT and the possible increased risk of breast cancer. His opinion is that the risk is lessened for a woman my age, because having estrogen in my body at 39 is natural, whereas the natural state for women of menopausal age is for there for be no esrogen. He believes it’s that unnaturally lengthened exposure to estrogen that raises the risk of breast cancer. So if I do end up on HRT, it would be gradually tapered off as I get older and closer to a natural age for menopause.

He has more concerns about progesterone than estrogen, so if it turns out that I have to lose the ovary, he’s recommending the removal of the uterus, as well. The reason for this is that you need to take progesterone as part of your HRT when there’s a uterus in place, so he would prefer to remove the uterus which would allow me to only take estrogen. But here he’s leaving the decision up to me, because of the possibility that we may try to use donor eggs. With no uterus, that would obviously be impossible.

So the surgery is 12/17 and I have an MRI on 11/26. The MRI will give us a better idea of what we’re dealing with, since MRI’s are very good at seeing cancer. Depending on the MRI results, currently only a cystectomy is planned. The cysts will be biopsied while I’m in the OR, and I’ve already given him permission to remove the ovary if any cancer cells show in the biopsy. I’m still considering my options about the uterus if it comes to that. If the biopsies do show cancer cells, he’ll also check some lymph nodes and possibly remove the rest of my omentum if he left any there the first time.

He was going to do it laprascopically, but Scott reminded him about the bowel perforation last time – which he would have discovered for himself later that evening when he reviewed my surgical records, which he took with him from Beth Israel – and he doesn’t want to risk another bowel perf or vascular damage. But there’s something else Dr. K was wrong about, since he said it couldn’t be done laprascopically. (Which, in retrospect, what did he know, since he doesn’t know how to do robotic surgery.) The good news is that he thinks he’ll only need about a 4-inch incision this time instead of the 7-inch incision he used the last two times.

To say that I’m more comfortable with Dr. H would be an absurd understatment. The relief that I’m feeling right now is palpable. Scott tells me that everything about my demeanor changed the second Dr. H started talking. It’s still possible I could wake up ovaryless, but now I know, with 100% certainty, that if that happens, it will be because Dr. H had to do it to protect my health, not because it was just easier for him that way.

If I could clone anyone in the world, it would be Dr. H. I would clone him and have each of his clones go into a different medical specialty so that everyone could have a doctor like this. He’s the absolute best.

And, one last thing, I think I’m going to like NewYork-Presbyterian Hospital better than Beth Israel. Beth Israel is a fine hospital, but NYP feels nicer.

Holy crap. Has it really been that long since my last post? So much has been going on. I keep thinking about writing things to post here, and then I never get around to writing them.

The most pressing thing going on is the diagnosis from the oncologist, whom I saw on Monday. It’s not pretty. It’s not particularly life-threatening, but it’s not pretty.

He thinks that, given my history, there’s a high likelihood that the cysts are, indeed, tumors. Or that at least one of them is. They’re definitely growing. The largest is now at 10cm, which is about 4 inches for those of you, like me, who don’t cotton to that fancy metric system. That’s big, and there are three of them. The other two are hardly smaller.

They’re large enough that I’m definitely feeling them now. I have some abdominal pain most of the time, and pressing on my abdomen hurts. The other day, I sneezed and peed a little, because they’re pressing on my bladder. Possible tumors or not, if they’re making me pee a little when I sneeze, it’s definitely time for them to go.

The problem with making them go away is two-fold. The first problem is that they’re too big to be removed laprascopically. They wouldn’t fit through the tube. So the surgery will have to be yet another laparotomy, with a third 7-inch vertical incision being added to the collection of two I already have on my belly. It just sucks. I don’t want to DO this again. I’ve been through it twice already and I know what to expect, but I’m still scared and I don’t want to do it.

The second problem is that this oncologist thinks there’s no point in even trying to save the ovary. He says he doubts there’s even any good ovarian tissue left, between the current cysts and the scarring and possible adhesions from the previous two surgeries. And he thinks it will just come back again if we leave the ovary, which means a fourth surgery.

I know he’s right. I do. But it sucks. It just really fucking sucks. I’m only 38. I don’t want to start menopause now. I wasn’t ready to give up the idea of using my own eggs for IVF, either.

The only bright spot is that he’s willing to leave my uterus and cervix, which means that I can still have the option of using donor eggs in the future.

Right now, surgery is scheduled for 12/4.

However, I didn’t really like this doctor. This was my first time meeting him, because the other doctor I was seeing left the practice between the time I had my last ultrasound and the time the results came in. (Nice, right? He didn’t even send out a letter.)  It’s not that the new guy is unkind or seems incompetent. There’s just something about him I didn’t like. I think it was that he wasn’t direct enough, and I felt like I was ripping his fingernails off one by one trying to get information out of him.

Now I want to go for a consultation with my original oncologist, who did my first two surgeries and with whom I am deeply in love. He left the practice while I didn’t need an oncologist and also stopped taking my insurance, but now I have different insurance and it turns out that he does accept the new one. So I’m trying to get an ASAP appointment with him, but his receptionist was out today.

I know the surgery is definite. It has to happen. The only question is do we try to save the ovary and who does the surgery. I want my original oncologist to do it, if I can ever get in to see him. The problem with him doing it is that he told me, straight out, that the next time he has to operate on me, he’s doing a hysterectomy. Ovary, uterus, cervix, and all. The original cancer was staged at IIIa, because he found a nodule on my colon. Given that and the fact that it keeps coming back, he’s probably going to want to go radical. If that’s the case, I don’t know if I still want him to do the surgery, but I like him so much.

So now I’m just trying to hold it together. I’m trying to fake being okay with it all in the hopes that I really will be okay with it all soon. It’s not working too well, but it’s only been a few days.

I finally, after several weeks, got around to calling the gyn-oncologist’s office back today. I think I put it off for so long because I knew I wasn’t going to be pleased with the news, so it was ostrich syndrome. The hope was that I would call and they’d say that yes, they’re just cysts, and it’s no problem to send a letter to the RE giving permission for them to be aspirated. But because I get very few things I hope for, that wasn’t the case.

The cysts grew between the two ultrasounds. There’s concern about the one with debris. He wants me to come in to discuss my options.

Meh.

So I go in on 10.13. I could have gone on 10.7, but I prefer Monday appointments. Yeah, it’s a long time to brood about it, but gyn-oncologists are in short supply even in NYC, and it’s tough to get an appointment sometimes. Since I’m in no danger of dying between now and 10.13, it’s fine.

Scott posted today about how back to school time makes him feel. I love when he talks about this kind of thing on his site, because it’s so rare to get a man’s perspective on all of this infertility stuff.

9 years ago last night, I met Scott’s family for the first time. The night before my wedding. We’d been together 4 years, and I was just meeting his parents. Meanwhile, he met my family and attended a family wedding when we’d been dating about 15 seconds.

Last night, to celebrate the anniversary of the evening before my marriage, I stayed up till the wee hours of the morning with a sick cat. I’m beginning to think that Goblin has some food sensitivity issues. A big part of it is that he’s a glutton and eats more like a dog than a cat, so if we’re not careful to watch him, he’ll eat his own dinner and Xena’s and Joxer’s, too. The Twins eat very lightly, so there’s always plenty left over for Gobble to gobble. Even still, most times when he overeats, he doesn’t get sick. Once in a while, though, he gets so sick he asplodes. From both ends. For hours. Last night was one of those nights, so I stayed up late to keep an eye on him and clean up everything he expelled and also to make sure someone was around in case a middle of the night trip to the emergency vet was warranted. Scott and I came to the conclusion that this must be brought on by something in his food, so we’re keeping track of what flavor of canned food he gets every night so that we can make sure to not give him that kind again if it results in a cat explosion.

Meanwhile, here I was the night before my wedding anniversary taking care of a sick cat. When we got married, I figured we’d have a 7-year-old by now, and that if there were late nights like last night, it would be because of a sick kid. The gods are laughing at me.

But, infertility aside, the last 9 years have been a mighty fine ride. Oh, we’ve had our ups and downs, like every marriage does, I suspect, but I’m so glad that we’re married and together and in love. I can’t wait to see what the future brings us.

Happy anniversary, monkee.

I think I’ve written enough about this topic over the years, so I’ll just leave this as is. ‘Nuff said.