Once in Royal David's City

I'm not crazy. It's Christmas Eve.

It's the one night when we all act a little nicer.

We...we smile a little easier. We...we...share a little more.

For a couple of hours we are the people we always hoped we would be.

Bill Murray

So I skipped our company Christmas party last night. It’s been a difficult fall since my last post. I’ve been really struggling with mood regulation. I seem to fluctuate hourly between why-bother depression and everyone-sucks anger.

In September I had so much work I barely had enough time to breathe. My online classes restarted at the same time as my seniors applied to college and I wound up working every waking minute. Not the greatest choice but it’s what I committed to.

In October my father had another difficult surgery and again, I flew out and took a bath in the toxic atmosphere that is my parents. Honestly, the best metaphor I can think of is a sheep being dipped in insecticide. Being with them is like being dunked in poison. Not so great for the mood either.

In November I got a rude awakening at work. After setting some boundaries and saying no to a project, a colleague called me out and said that she had some major problems with me. I’m pretty open about the fact that I have a disability and that we’ve had a really rough year personally with the whole surrogacy situation. But my colleague said that my disclosures made our boss hesitant to treat me as brusquely as she treats others and that it made my colleague feel like the only way to be treated well was to spill her guts too. I admitted that this could be the case and apologized if my actions had affected her negatively. That didn’t work.

She then said I was a hypocrite because my preferential treatment at work made me seem two-faced when I’d voiced frustrations in the past. I couldn’t fault anyone for incompetence because those people weren’t getting my special favors. When I approached the partners and asked if it was true, I was told that it wasn’t but it was a complaint they’d heard before and from another senior colleague.

Of course, this all happened about 6 hours before I’d planned on taking a few days off to rest and regroup so suffice it to say, this completely derailed that plan. Instead, I spent my long weekend visiting friends and asking, could I really be THAT clueless? Ultimately, I decided that I just didn’t have any allies at work and that my openness was at the very least, divisive.

Shortly before and after this we celebrated my best friend’s birthday and Thanksgiving at her house and both visits brought reminders of how truly and profoundly shattered I am about the whole no-baby-because-friend-is-dying situation. By early December, I felt like 2014 had been one long beating. I felt drained and sad and honestly, a bit hopeless.

My 40^th birthday is coming up and it’s inevitable that on such an occasion, one takes stock. And when I look back at the last 40 years I see pain upon ceaseless work upon bad luck. I don’t know if this is what life is like for other people but I’m not really enjoying it. I’m more… surviving it. I try to count my blessings. I DO. I have a wonderful partner. I have the luck of intelligence and socio-economic privilege. I’ve had remarkable experiences and opportunities. I know I’m living better than most people on this planet. But underlying all that is 40 years of illness that drains the color from these things. And that’s real.

So instead of going to the company party last night and pretending that I have any meaningful connection with the people there, I stayed home and tried not to feel sorry for myself. It wasn’t easy; there were some real woe-is-me moments. And then my husband took the remote control and kept putting on holiday movie after holiday movie until slowly, the spirit of the season started to get the better of me. Around midnight, we watched the end of the movie “Scrooged” and as I listened to Bill Murray’s drunken rant about Christmas Eve, I realized. Um, hey, that’s my birthday and that’s kind of describing… me.

I’m well known for being an over-sharing softie. I’m sensitive in all the good and bad ways that word connotes and I’m not saying it’s some gift – it’s just how I’m built. And it gets me in TROUBLE. I get easily frustrated when I see people around me struggling or failing and I have a hard time holding my tongue. Some probably wouldn't think of that as “nice.” I want people to be better, to do better to, as Murray says, to be “the people we always hoped we would be.” Because I know that every morning I wake up and I try to do that and it’s frankly exhausting. And I don’t think I’m going to be able to stop anytime soon. I’ve tried the whole saying “no” thing this fall and it’s gotten some surprisingly negative results.

Maybe being born on Christmas Eve imbued me with some crazy, elf-like kindness and tendency to share too much of myself. Maybe it’s just Christmas Eve. Maybe I’m not crazy.

Stick a fork in us

Yeah we’re done. No more surrogacy. I’m not going to try to carry one of the embryos. And no, we’re not pursuing adoption – international or otherwise.

I’m sure many people in our lives will question this decision. But believe me: it was arrived at through much deliberation and the overwhelming gut feeling that this is the right – nay, only – reasonable choice for us at this point.

I could go into all the reasons for our decision but they all boil down to the desire to limit risk. Our lives are actually pretty full and trying further reproductive interventions and/or raising a child is more than we're willing to take on now.

How do I feel? Well, as my students would say, I have all the feels:

Grief: this blows.

If we’d been successful when we started trying to have a kid, we’d have a 7 year old right now. I like 7 year olds. They’re lovely.

Contempt: this blows.

20-20 hindsight is a bitch. I often wish had the last year of my life back and had never wasted all this hope on a fruitless process.

Anger: this blows.

We’ve had an absurd amount of disappointments at this point. Not fair. Everyone else who’s had it easier can suck it.

Fear: this blows.

We are so isolated. We barely have any family and now we’ll have no kids and our closest friends are dealing with terminal cancer.

Optimism: this might not blow.

We can travel and spend money and time on ourselves and won’t have to deal with more sadness and disappointment.

Love: this might not blow.

I have a wonderful husband who I adore and get to focus all my love and attention on. I know I have his unconditional support.

Acceptance: this might not blow.

I have a fascinating new career that I can now fully devote myself to that helps people and makes me feel fulfilled.

Surprise: this still blows.

Realizing I no longer want something I thought I always wanted makes me feel hypocritical and lazy. After everything we’ve been through, kids seem too hard. We’re exhausted. And THAT’S why we’re done.

buoyancy

So… what’s the latest…?

Um, nothing.

Not a damn thing.

I’d never really (REALLY) understood what it meant to live in the moment… but man, if the past two months have taught me anything it’s that that is exactly where I want to be. I don’t want to be two minutes ahead or behind - I’m just trying to appreciate the life in front of me. Honestly, anything else just isn’t important.

So after our horrible, terrible slew of bad news in mid-May, I decided we needed an injection of LIFE. So I bought some sea kayaks.

Kayaks. Kayaks? Well we’ve been meaning to get a pair for years (I mean, we live ON the coast) but we just never wanted to spend the money. But vacation was looming and since we didn’t know what was happening re: baby news, we hadn’t made any travel plans. So screw it, I figured, vacation is now kayaking in our ‘hood. We bought a couple used ones on ebay and paddled around and it was nice. We’ll keep them and go out occasionally when good weather and weekends coincide. Yeah they’re huge and we’ll have to rig a hoist to store them in the garage but whatever. Kayaking makes me happy. Know what else makes me happy?

Being a nerd. After babyfail #2, I decided to go back to school online to get a professional certificate in the type of teaching I do. It’s a graduate-level program from a top-rated university with reasonably well-credentialed instructors and I think it’s safe to say I’m CRUSHING it. The other day I cited five sources including two scientific papers in my blog/discussion/forum post thingy (which is a proxy for an actual class discussion) because… um, it was interesting. It’s making me feel so much more engaged and stimulated and just interested in my job. When this course is over next summer I can seriously see mtself signing up for further certificate programs in complementary areas. Does it make my schedule a bit more of a juggling act, sure – but whatever. Being smart makes me happy.

Other “new” things that I’m doing these days for no other reason than, I feel like it?

• Meeting neighbors for coffee. Yeah, some of it’s related to networking and some of it’s just venting with friends. But it comes with a croissant and I know myself well enough these days to know that talking to other human beings makes me happy.

• Saying no. No, we work a shifted schedule and don’t want to meet at for breakfast at 9am (sorrynotsorry). No, we don't really want to go to visit you in freezing cold Oregon just because you’ll let us stay there for free. No, you’re not my therapist anymore because frankly, you’ve been phoning it in for the last year and I’m tired of being irritated every week by the sucking sound in my wallet. No, I’m blocking those groups (or anyone for that matter) on facebook that posts a single image of an abused animal. Nope, nope, nope nope. No, I really don’t want to have that work meeting on a Saturday because it’s what we’ve always done. I don’t care what we’ve always done. This year, I’m spending time with my husband in a location and time of our choosing because it makes me happy.

• Doing nothing (well, my version which is being still & reading). I can do nothing by the hotel pool, in the hammock, in the evening… frankly any damn place I choose. And doing nothing may extend to fertility stuff too. Because we’re frankly fucking tired and listening to someone scream while I change her diaper at 3am sounds like a complete nightmare right now. Because rest makes me happy.

• Being outside. Go for a hike on our anniversary and get horrible swamp ass and love it. Sit on the porch at sunset and marvel. Watch the dog bounce around the lawn and marvel. Just being out of doors because it’s FINALLY warm and it’s pretty and just the fact that it wasn’t like this for six long months makes me happy.

• Avoiding drama. This one’s hard when you have a friend who’s dying and you’re staring down the busiest month of the year at work. (Just today four colleagues came into my office – simultaneously – to complain about how much work they have. I politely asked them all to leave so we could all do, um, WORK.) And I’m trying to recognize that there’s only so much I can do when a friend’s dying. A mutual friend begged plaintively last week, “but what can we doooooo….???”

Um, nothing, I said.

Not a damn thing.

It’s going to happen and it’s going to be terrible and we’ll help if/when we can but this is their family and their decisions. And my husband and I probably won’t get a child. And it’s all just terrible. And this last item doesn’t so much make me happy… but I just named about 7 things that do. And that’s something.

vast (like this post)

So we still don’t know all we’d like to about our GC’s wife’s health but the CAT scans show what appears to be stage 4 liver cancer – ie: huge masses throughout the organ. We still need to learn if it’s a primary or secondary tumor, if it’s spread elsewhere (lymphatic system, brain) and if there are medications that could give her a few more months. From everything we’ve read, she’s not a candidate for a transplant so this is likely terminal.

For what it’s worth (squat), we got the news at 11:20am. The transfer was originally scheduled for 1pm. I kind of hate that we made the right call to cancel everything.

- - - - -

An old friend yesterday made a very wise observation. I had just spent the past couple of hours over lunch, telling her how things had fallen apart over the past 4 months. (note to self: if it takes you a couple of hours to cover everything… yikes.)

Anyway, she commented that I seemed awfully… hard on myself in the telling of the tale. Well, yeah, I admitted. I sort of have a black belt in beating up on myself. I feel extremely guilty about all this. She asked for clarification since of course, what I was saying didn’t appear to be a terribly rational take on things. So I listed my mistakes:

• I should never have even considered surrogacy and read more about others’ experiences before embarking on this. I may have realized it could be too difficult financially and emotionally for us.
• Instead of surrogacy, I should’ve put my time/money/efforts on taking better care of myself so that I don't require medication and could just carry the embryo myself.
• I shouldn’t have allowed a friend to volunteer to be our surrogate. I should’ve said, thank you for the amazing offer but we’re going to go with a stranger who we're less emotionally intertwined with.
• To that end: I did not adequately investigate what burdens she already had in her life, namely the state of her wife’s health. I did not want to pry & assumed the fertility clinic was adequately vetting this.
• I should’ve listened to my gut when it told me that my friend was overwhelmed by the commitments she already had and stopped in February.
• I should’ve been nosier when her wife received the initial cancer diagnosis. If we had known more, we would’ve immediately learned more about the prognosis & treatment for this type of cancer helped them find a specialist who may have caught the metastasis in time.
• I should’ve told her not to hide bad news from us – that more information helps us make better decisions.
• And there’s probably about 12 other things I blame myself for too.

And then my old friend reminded me that the universe is vast. And that there is so much that is just beyond our control. That biology and families and people are messy things. That we are not clairvoyant and cannot research our way into a complete prediction of the future. That sometimes life just spirals into a mess despite our best efforts.

And that made a lot of sense. And sounded pretty familiar since my husband had just recently told me almost exactly the same thing.... He said that I really needed to stop believing the script my parents had bequeathed me that there was a RIGHT choice for everything and every scenario. He said that one of the things that bugs him the most about my family is our belief that if we just think hard enough we can figure everything out. Anticipate every problem, game every situation, avoid every mistake. It’s not only just not true, it’s a dangerous, egotistical way of thinking. It makes you paranoid and overly cautious and very, very critical. And then my old friend asked me something that another friend had asked me just 24 hours before:

“What do you think the larger message is here?”

Normally, I bristle at questions like this. There is no larger message. There is no grand plan or god. Stop getting all Zen up in my face. Life just sucks sometimes for absolutely no reason. But this time it dawned on me: that doesn’t mean you can’t LEARN from the suckiness.

When my first friend asked me this, I nodded and said, YES. Finding a message in all this would be kind of nice – it would give me something to take away from all this mess – like a goody bag of wisdom handed out at the worst party every. I said:

“Well... when I realize this likely means we’ll never have kids, my initial reaction is that perhaps I get to spend my whole life taking care of myself and not someone else. I had a hard go of it for a long time and nurturing myself would not be the worst thing to happen in the second half of my life.”

But when my second friend asked me the same exact question yesterday, I instantly had a different answer. I don’t think my first answer was off base, it just wasn’t specific enough. We’d been talking about guilt and I said:

“Perhaps the message is that the best way to nurture myself is to forgive myself.”

Ever since I got super-duper-call-the-cops (twice) sick in 2003, I’ve been pretty hard on myself about how all that played out. I’ve always hated the idea that my mental illness made me a liability in the lives of those I loved and I often think that what I put my husband through 11 years ago is so unforgivable that I will never be able to make up for it. All I could do is try my damndest to never, ever let things get that messy again. I frequently ruminate over the mistakes I made back then:

• I should’ve realized that I was self-medicating with alcohol and found a doctor to prescribe me proper medications instead.
• When I finally broke down and did ask for meds, I should’ve gone to a psychiatrist and not my internist. I knew better, I was just scared of shrinks.
• When I started the medication, I should never, ever have kept drinking. Or when I realized that I couldn’t do that, immediately asked for help.
• When I did start to realize I couldn’t stop drinking, I should’ve just gone inpatient like people recommended and trusted my family to take care of me.
• When I really started to go off the rails and it became clear that I needed hospitalization, I shouldn’t have fought it for so long & trusted my husband’s judgment.
• When I thought there was no other way out besides suicide or lying, I should’ve just walked into the nearest hospital and said uncle. I came close one day. I stood in the elevator lobby of a local hospital and studied the directory. I knew which floor to get off on. I was just too scared of how much it would mess up my life. So I drove home.

I’m guess you could say I’m petrified of messiness. I’m scared of things getting dirty and disorganized and conflict and unpredictable disasters. But I cannot control everything and should not expect myself to do so. And I can try to forgive myself for thinking I could.

Because the universe is messy and unforgiving. And vast.

Nevermind

Well. That ended rather quickly.

During a conversation yesterday morning with our GC (we were discussing transportation to next Friday’s 3^rd embryo transfer) she casually mentioned that her wife would be having a PET scan the day before the transfer.

….

Oh that? That’s the sound of a needle scratching.

Apparently she has spots on her liver. Enormous spots. Spots the size of a salad plate. Spots that were 1/10^th the size in November. They’re trying to think positive and just go on with their lives with a ‘business-as-usual’ mentality. ½ denial + ½ overwhelm + ½ they don’t live with a scientist.

But I do. And I instantly understood what we were potentially talking about here. Sometime the day before or the day of the embryo transfer next week, they are likely to learn that my best friend’s wife has terminal liver cancer. My husband did a quick pubmed search and discovered that the skin cancer she was diagnosed with 2 years ago typically metastasizes to the liver and has a 22% survival rate at 5 years.

We of course, did not know this when we agreed to try and have a baby with them. I’m not sure they know it. And of course, none of us is sure if this is what has happened. But salad-plate sized spots are never a harbinger of smooth seas ahead.

So over dinner last night my husband and I discussed what to do. Gamble on the test results coming back fine? That seemed so unlikely given all we were reading. And if we did that and the test results weren’t OK, we’d have to make all these decisions at the very last minute. And if for some reason we didn’t have all the information and went ahead with the transfer anyway we’d be in a really terrible spot. Either it’d fail and we’d always wonder if the stress of the situation had done it, or it’d WORK and we’d be watching our baby be gestated in possibly the most stressful situation we could imagine – while our GC watched her wife die. And if she is going to be extremely ill or die we’d be the ones who would want to help – not add another stressor to her life. We’d need to help out with her sons and support her and… and this was all getting WAY TOO FUCKED UP.

I looked at my husband and said: “I don’t know about you but my gut is screaming, ‘this is 110% more crazy than I can tolerate’”

And then I picked up the phone and in the most delicate way possible, told my best friend that we were stopping. I told her it was a “break” but I don’t really think that’s true. I think we’ve hit an enormous brick wall that we are not going to see the other side of. I think this is really and truly it. They will be dealing with a very serious illness and husband and I will be moving on with our lives.

Yes, we might briefly talk about if there are any other ideas left out there. I could attempt to wean myself off my medication and have a go at it myself. But I don’t know if that’s even possible or a good idea.

Right now, I have three main emotions:

1. 1.     Relief. This cycle was getting hard to deal with. I don’t know why exactly. Chalk it up to battle fatigue. But knowing you’re walking into almost certain failure was not sitting well with me each passing day. And yesterday, that fatigue turned into panic and I just wasn’t going to be able to sit with that for the remaining 3 weeks.
2. 2.     Guilt. I cannot believe my desire for a kid dragged my husband and I, my best friend and her wife and my parents into what turned out to be an incredibly expensive, upsetting and bafflingly complicated mess. I did not want to spend a year of our time/money/energy on something that turned out to be so pointless.
3. 3.     Fear. I am not ready to hear that my friend’s wife is as sick as I think she is. I’m truly petrified for them. I’ve known her for 20 years. She is essentially my sister-in-law and the primary caregiver for my two ‘nephews.’ I do not want this for any of them.

I suppose if this really is the end – there will also be grief. But honestly, right now that’s just going to have to wait it’s turn.