Great Good Fortune

Researchers at UC Berkeley have been experimenting with isolating various genetic mutations and testing how well (or poorly, in many cases) the enzymatic activity functions in various MTHFR mutations. Since many subfertiles I know have at least one of these mutations, I wanted to share the article link.

One offhand comment in the article bothered me: “Most scientists think that harmful mutations are disfavored by evolution, but Rine pointed out that this applies only to mutations that affect reproductive fitness.”

Clearly, this person does not appear to know how such clotting mutations as MTHFR can contribute to– dare I say cause?– recurrent miscarriage. That seems to me to be a mutation that affects reproductive fitness. I do not mean to criticize those doing research so near and dear to my heart: I just hoped they might have the larger biological picture more clearly set in their minds.

The researchers propose that people could benefit from “custom vitamins” to help eradicate the effects of such mutations.  While I think customized vitamin therapy would be a good thing, I also think it’s a long way off. I’m glad I took Dr. Beer’s work seriously and already have Folgard to help offset my homozygous C677T mutations. I definitely feel an significant energy boost when I take it regularly.

The feeling in the air is visceral. Beyond the crisp breeze on my skin, past the excitement of the World Series. It extends through the vibrant autumn shades gracing treetops and the sound of dry leaves skittering down the street that greets me each time I step outside. I love this time of year! I prefer to wear more clothing to keep warm, vs. being practically naked and still too hot to be comfortable. I LoveLoveLove the cooler weather and the RAIN!

Most people think of Spring as the reenergizing time of year– the earth gently warming up and bright green life creeping into the landscape. For me, October is invigorating, and the saying “hope springs eternal” applies most aptly in the fall.

October is the only month where I’ve been able to start– and keep– a pregnancy. After five pregnancies (two successful), it seems like my body is telling me to just get a clue and give up at any other time of year; my body just prefers to gestate in winter. It borders on superstitious.

I feel like I shouldn’t be thinking about this. Each day I am so mindful of my two amazing children, and I keep trying to not want any more, to simply appreciate what I have been blessed with already. How do I change a lifetime’s desire to have three or four kids? Obviously, I have not progressed much in my struggle to change what I feel I am destined for. I’ll be 36 in next week, and I know the risks for everything increase after 35 (especially hesitant since I’ve already lost a child with Down’s). It’s not like time is on my side here.

Part of this driving need likely stems from being an only child, and how lonely my childhood was. I was perpetually the new kid from moving so much, and I spent a lot of time alone. I was particularly aware of being an only as I watched my Dad die, and it made me realize that I will be the one to care for my mom when the time comes. It’s not a responsibility I dread (rather, I hope I can adequately repay her efforts to thank her for all that she has done for me). But I do think it would be comforting to have a sibling to share it with. Someone else who would remember my parents much as I do, even after they are both gone.

I was programmed to love big family gatherings early. With five maternal-side aunts and uncles who married and had another 11 cousins for me to play with when we went to Wyoming for the holidays, it was always a busy and fun time to be together. Voila– instant family! Those are the family gatherings I picture as my ideal. I’d love to be surrounded by multiple children and their spouses in my old age.

We still have not come to any decisions about whether we will try again. Part of me is deathly afraid I will screw something up by tempting fate just one more time, that I will lose the good feeling I have in my body. I could end up feeling as crappy as I did after my Miracle Girl was born, a nosedive that took me five years to pull out of, and only after Tiny Boy came along and somehow seemed to reset my body chemistry. Would I be risking too much by attempting another high-risk pregnancy? I could not stand to leave my children without a mother, my husband without a wife, but I also feel there is another child out there waiting for me to bring her/him here.

Fall always does this to me– it’s like my siren song.

I’m one lucky bitch to even be contemplating this. Should it be enough to simply drink in my favorite season and just… be?

Is it the ultimate hubris to even let such thoughts in? How do you deal with wanting more than you have in life? Do you have a way of recognizing for yourself when it’s time to sit tight and just love what you have, even if your heart yearns for more?

I’m having some good days, some bad days, and a few that are such a mixed bag it’s hard to put any kind of label on them. I still struggle to answer the most frequent question… “How are you?” My reply depends on who’s asking, and how much time and interest they have in the true answer to their question. Every day I have a sadness that descends. I miss my Dad. Yes, he was sick and I got to say goodbye, but it still hurts that I can’t just pick up the phone and call him anymore. And I feel angry that he died so young. He’s going to miss out on so much, we all are. That part just sucks.

There was a bit of drama regarding my father’s cremation, wherein his girlfriend found out that the funeral home she chose was owned by a firm that was implicated a few years back in mixing humans with animals for cremation. She FREAKED the eff right on out, and immediately called me and said she needed to move him to a different funeral home. Okey dokey, I dealt with signing the required document from afar, and everything there is back on track again.

In the process, I learned a pretty cool thing: did you know that you can use Adobe Acrobat to digitally sign a legally binding PDF document, instead of having to get it notarized and snail mail it? That at least made it easier to complete the paperwork aspect of the switch.

Compounding the crap aspect of my life, we have been on a roller coaster trying to sell our condo since January. We had an offer a week ago, a total low-ball affair that we countered and worked hard to negotiate back into the realm of reality. Between our agent and theirs, we came to a mutual agreement, and they were going to write up the counter to our counter-offer. But it never materialized! I had a bad feeling about these people, even with nothing much to substantiate it. Then, on Thursday, they submitted a new offer, with all the terms we had previously negotiated. Seemed like a good thing, and then the situation appeared to get even better. We got a second offer (multiple bidders, woohoo!). Unfortunately, it was way too low, and they refused to negotiate.

So, we ended up accepting the first (really: second) offer on Saturday, and felt relief and happiness to finally move toward completing that aspect of our lives. Until… the bastards CANCELLED their freaking offer yesterday! Talk about shock and dismay, especially when we learned that we have no financial recourse because it occurred within the three day “cooling off” period… even though they’d actually had over a week since they made their first offer to consider everything, and they never even HAD to come back to make us another offer! Lousy skanky jerks, we eventually learned this is not the first time they’ve done this to someone. And so, we lost both offers because of this. I have one word of warning for people who do this, and it is: KARMA. And that’s all I’ve got to say about that.

On the homefront, Tiny Boy’s still teething. Tooth #5 has now appeared/disappeared not once, but TWICE. I want to know WTF is that all about? He’s happy to be home, to be with sister and Daddy and doggy and kitty again. He’s quite keen on being right in the middle of the action, and can now sit in the tub for bathtime without the tub chair. For some reason, the wonder of the independently sitting child has made my life so much easier. I am mindful that it is the calm before the crawling/walking storm!

Everything right now revolves around my kids. They are my saving grace, keeping a rhythm to my days, and giving me brights spots even when things get very trying. I’m just taking it day by day. And so grateful for my children, my family, my friends, and new babies! These are the reasons I still find an opportunity to smile each day. Even when the predominant feeling most of the time is sadness.

Springtime in the desert looks like any other time of the year: sand, scruffy shade trees, and cactus everywhere. After the hard frosts this winter, some entire species appear dead. Others are pushing out new growth.

It’s not until I look closely that I can begin to see the changing of seasons. Driving the speed limit through the Saguaro National Park, I was oblivious to the saguaro cacti in bloom. The closed buds are just big enough to see if you stand right beside one, craning your neck back to see the growths emerging several feet above you on giant upturned arms. The tops of prickly pears sport blossom hats, and the wild animals call and chatter through the night and into the morning.

Spring rolls across this landscape in a wave, encouraged by a recent single rainstorm. But inside one house, spring is just another word, not an event to be experienced.

My father’s house is surrounded by pure desert. He has an enormous four ton saguaro out front, with many arms all unbroken and free of gunshot holes (someone apparently thinks it’s a thrill to shoot a plant). There is a mesquite tree with daunting inch-long thorns shading the corner room where a dying man lies.

In his hospital bed, my Dad looks shrunken. He was once six foot four inches tall, but now it’s hard to take his measure among the sea of blankets. His gaunt face is his most striking feature, and his bald head is finally tan from being many months hairless. His face is pinched and has aged rapidly. He looks much older than his 54 years. He sleeps so soundly for so long that it becomes worrisome, until I realize it can only be a drug-induced rest.

He spent last weekend in a nursing facility to be evaluated for hospice. He returned home much too heavily medicated. His loud complaints of pain– which if you know him were simply his way of trying to get attention because he felt alone and scared– convinced the staff to double his oxycontin and start him on Dilaudid, two very powerful pain reducing drugs. What he needed instead was reassurance, someone to calm him down with kind words and gentle touches. The overmedication certainly did tame him– to the point of delirium when he tiptoed dizzily toward wakefulness.

Tonight, the first night he was home, he awoke with a brand-new british accent and speaks incessantly of paying obscene amounts of money for everyday things. $393,000 for dinner for his family of 39 (actually, only 3). $287,000 for a Maserati. He’s convinced he is in a house with many, many rooms.

He is bedridden and paralyzed from the waist down, due to tumors that have invaded his spine. He coughs in his sleep, a sound that singlehandedly transports me to my childhood. But now, the fits end differently. Each burst hisses off into a wheeze, instead of the habitual final throat clearing I am accustomed to. His lung capacity is significantly diminished.

Awake or asleep, he rubs the right side of his head frequently, and buries his index finger into his right ear for minutes at a time. He can’t tolerate wearing his hearing aid for long, but only his girlfriend and I know why: his skull is distorted on that side from the brain tumor within. He has come back home to die.

While my son plays on a blanket beside his bed, and even occasionally on Grampy himself, Dad remains oblivious to the changes outside. The desert was something he fell in love with 25 years ago when he moved to Tucson from Kansas, just a farm boy moving to the big city with his young family in tow. His love affair with this stark landscape has kept him close to it all these years. While his eyes occasionally linger on the view outside, he shows no sign of recognition, nor voices a desire to get out into it as he once felt driven to do each day. Today, he is no longer aware enough to care.

I hope my Dad is still in there somewhere. I know he would like to see the changes in the scenery around him, to see the renewal and the commitment to live despite the uncharacteristically harsh season just passed.

My Reproductive Immunologist, who I believe was in his 80’s was actually only 69, died

unexpectedly yesterday in his sleep. I learned the news from a good

friend and fellow patient who lives 1000 miles away. Ironic, since I

live about 15 minutes from his office. I feel so sad. And concerned.

Dr. Beer was such an amazingly gentle, intelligent and

compassionate man. So tall, and always interested in hearing progress

reports from his patients. He was always able to explain the most

complex issues in a way I understood, which says a lot in a specialty

as misunderstood and convoluted as his. He was truly a pioneer in his

field. I always felt confident that he knew his stuff and that I was in

good hands.

There are very few RIs in the world, and only about 4 in the U.S. that are well-known. He had written a book

that is in the final stages of publishing; a work that I feel confident

will do a lot to advance the knowledge and acceptance of Reproductive

Immunology within the medical community.

I feel so fortunate, being this close to the

ultimate “goal” of completing a successful pregnancy. I know so, so

many of his patients who are at various stages along the journey. Many

who hear their biological clock ticking louder than any clap of

thunder, beating a constant driving rhythm into their every thought and

action. Many who now will be searching for a replacement RI, and feel

they have so few options.

My RI reassured me twice that he was training a replacement,

and for my sake, for the sake of ALL these brave women traveling a

similar path, I truly hope there is such a person who can step up and

take over his practice. I know of one RE about an hour away who follows

similar protocols, though his practice mainly focuses on combining

these treatments with IVF and other assistive reproductive

technologies.

As for the day-to-day business of the practice, I hear that one

of his fellow OBs who helped monitor the first trimester high risk

patients is stepping up to keep things running in the interim. For

someone at my stage of pregnancy, just a few short months before

delivery, I feel bereft and worried. What will happen to my protocol

now? Who will provide my OB guidance if there are complications? Where

will I go if I need additional IVIg infusions? Good thing I just got

the information about birthing while on Arixtra on Friday. If I did not

yet have that information, I know I would be in a full-blown panic

right now. It feels a little selfish to say that, but my view is there

are two lives at stake should something go wrong.

I truly feel that I was brought to this area 10 years ago– and

for one various reason after another we remained here even though our

hearts longed to return to southern California– so that I could meet

this man at the one critical point in my life where he could help us

achieve our dream of expanding our family. After my third loss, when I

learned about his work, so many of his research findings resonated in

my soul– I just knew

he could help me. And it turned out that as I read about each of the

categories of immunology issues, certain ones set of little bells in my

head. Those were, in fact, issues I was diagnosed with. I find it

curious and wonderful that our intuitions can be so attuned to subtle

things, but until we have knowledge that there are real-life physical

reasons to correlate to these intuitive hits do we actually give

ourselves credit with knowing it all along. Once I knew my diagnoses

and began treatment, I finally had something I could do about it. I had Hope. And while she is a fickle bitch, Hope, it was the spark I needed to actually try again.

This is a huge loss to the field of reproductive immunology. May his

family take comfort in knowing how very many families he helped create

through his pioneering work and exhaustive bi-coastal schedule.

God bless that man and his family. May God also bless the many

women who are feeling set adrift and worrying anew about their

reproductive future today. The patients he helped through the years

formed a second family that are also in mourning. Truly, he was a

legend among us.

—–

Updated to add this quote, often appended to Dr. Beer’s email replies:

"Innovators are rarely received with joy and established authorities
launch into condemnation of newer truths, for at every crossroads to
the future are a thousand self-appointed guardians of the past".
--Betty MacQuitty, Victory over pain: Morton's Discovery of Anaesthesia

To waylay a concern that was expressed, be assured that everything is fine. I wrote the following poem after reading the novel Sarah, by Marek Halter. The consistently heartbreaking theme of infertility resonated deeply, and I wrote the following poem as a result. I look forward to your comments.

—–

I sometimes wonder
How was I chosen to be among the few
To be granted the dream of a child
A wish ill-fated among women Christian, Atheist, Muslim and Jew

A curse rarely spoken aloud
Infertility at the hands of a mute God believed querulous
Many suffering though refused
Seeking answers miraculous

Sing out, my sisters
Be silent no more
Some win a battle
Let us finish the war

A fate since time immemorial
Consider beautiful but barren Sarai
Hers a desperation-bred curse until
miraculous Isaac born late in life

It seems so cruel
Seeking to bear life
Yet millions refused a flicker of hope
Multitudes of silent, suffering wives

Sing out, my sisters
Be silent no more
Some win a battle
Let us finish the war

Share the pain searing the spark of your soul
End the moratorium on enumerating your soul-crushing grief
Cry, shout, reach to others and proclaim the dreams denied you
Life extinguished, hope stolen by a thief

I dream of a day
Where no woman is silenced by shame
Communities of women embraced and supported
The infertility plague no longer our life’s bane

Sing out, my sisters
Be silent no more
Some win a battle
Let us finish the war

I think I’ve hit the proverbial wall. I’ve always subscribed to the "more information is good" philosophy, but today, I bellied up to the counter of the All American Gynaecological Diner, and feel as though I just consumed the most calorie laden, artery clogging menu special: the equivalent of the triple cheeseburger with curly fries and a chocolate malt. I’m all done in. I’m topped off. I’ve had enough, thanks.

I saw Dr. Thorough today, who specializes in all disorders female. He is world-reknown for his work pioneering video laproscopic abdominal surgery, namely for endometriosis. Which I officially have. Along with a uterine fibroid, or possibly an adenomyoma. My, how my pelvis is a busy place. Who woulda thunkit?

We are off on another wild phase in this journey, with even more tests to complete prior to surgery (in December). Genetic karyotyping for both my husband and myself, since we conceived one child with Down’s syndrome! Even more blood tests that haven’t been ordered previously! A pelvic MRI to create map of the fibroid/adenomyoma! And the most fun of all: a hysterosalpingogram, or HSG! This is where they will inject my uterus and fallopian tubes with dye until they inflate like balloons, then take X-rays to determine the size and shape of them (and whether my fallopian tubes are open or blocked). I inquired about pain medication for the HSG, because a few friends I’ve spoken with mentioned how painful it was for them, but I was advised to "take a motrin" a half-hour before the procedure. Great idea, like that’s worked so well for me in the past….

I was advised to not try to conceive until we have an accurate picture of what the laproscopic surgery will involve. And if it turns out we are successful with our attempt to conceive this month, then everything will be on hold until I am no longer pregnant. One would hope, after a full term live birth, of course. But that’s just me looking at the dessert menu. Again.

I think I’ve had enough for now. Please, no more bad news. I need some time to digest this truly oversize portion already on my plate.