FCMWarning: Way TMI (Too Much Information)

I've got gargantuan quantities of fertile CM today - I haven't seen FCM like this since I was a youngster! I bet this stuff could stretch 10 inches. It's flabbergasting actually. (Ready to barf yet?) If only J's little swimmers could make use of it and, like, get to where they're needed. But a sign reading "Dead End" is likely posted somewhere on the way to the fundus.

I wonder if my recent surgery to remove 5 fibroids, both fallopian tubes, a couple of endometriomas on my ovaries, and totally rampant endometriosis has anything at all to do with it?

I know that endometriosis and hydrosalpinx both emit cytokines and TNF-a (tumor necrosis factor alpha), but do those function in creating FCM? What DOES create FCM? I haven't an idea.

If any of you sistahs out there has a clue, please pipe in.

3 States, 2 Countries, 1 Day:Our LIT Journey

LIT stands for "Leukocyte Immunization Treatment", and is a treatment that was available in the U.S. for the last 20 or 30 years, until about 4 years ago, until under the current fucked-up administration, the FDA decided to ban it. LIT is done in response to a low LAD test (leukocyte antibody detection). If your LADs are low, then your body doesn't make enough blocking antibodies to protect an embryo, and you have a mini miscarriage that usually goes undetected. The test can be done at Rosalind Franklin University through any doctor's office, but as you see, the treatment isn't available in this country. In fact, the FDA says that your doctor can't even tell you about LIT. But that's not going to stop me from telling you.

The treatment involves taking 50 to 100cc of blood from the father or a donor (which depends on another test called a DQ-alpha), separating out the white blood cells (for B and T cells), washing them 2 or 3 times, and injecting them back into the female. 100cc of RBCs are reduced to about 100ml of WBCs. Two insulin syringes full. An immunization, if you will. It is highly successful if done correctly. But now us infertiles must all travel to the bordertown of Nogales, Mexico, to Dr. German Quiroga, for treatment. How fucked up is that?

My LADs were at 2.9% prior to LIT. Anything under 30% warrants the use of LIT. After two double-dose treatments my LADs should be somewhere above 90%.

This is our LIT experience and was written over the last few days.

Dr. Alan Beer's response to the Lancet Publishing a flawed study on LIT that was the crux of why the FDA banned LIT.
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Our whirlwind trip to Nogales for LIT treatment begins at 4:30am, Friday morning. I am already awake as I always sleep lightly before a trip that commences in the morning. I've always been that way. I don't think it's the excitement of a trip more than it is my paranoia about oversleeping and missing my plane.

We're out the door by 5:15am, and in the air by 6:30am. We are not seated next to each other, J is in a row in front of me next to the window. I always prefer aisle seats so I can get up without having to bother the person at the end. J prefers window seats as he gets motion sickness. He needs to be able to focus on the horizon to avoid barfing. This time I am seated next to a cute little girl from Los Gatos who is going to see her dad and his new wife, and baby, in Virginia. She is terrified of flying, on the verge of tears, and I do my best to ease her worries. I tell her it's like riding a rollercoaster. "That part where the rollercoaster goes down real fast? Well, it's like that except that you're going UP." "That was fun!", she says once we're airborn, with a big grin on her face, so I guess I did a good job. She asks me every question a little girl can think of, and then sleeps the rest of the way to Salt Lake City.

Once in Salt Lake City, we walk as far as I can to the next gate. It is just too much for me with the 5-inch incision aching like mad. I'd reserved a wheelchair at each gate, just in case, and we ignored the first one because the counter lady said, "Oh, your gate is just around the corner."

Around the counter, my ass.

We grab a chair and after about 10 more minutes of wheeling me around, we finally get to our plane. A tiny 50 seater, but at least we get to sit next to each other. Highlight of this flight, en route to Tucson, was seeing the eastern most portion of the Grand Canyon out to the right side of the plane. Damn it's huge. As an old friend once wrote to me on the back of a Grand Canyon postcard, "Kinda makes you want to spit." I wonder about the little girl on the first leg of the trip. Hopefully her flight is going well.

Arriving in Tucson, we walk, yes walk (ouch) to the car rental palace, grab our car and head south to the border. It's about a 59 mile drive and there's little of anything to do between Tucson and Nogales. Desert and more desert. We pass a mission, a mine, and the exit to the famous Rio Rico Resort, where all of the infertiles being treated for LIT say to go, but we couldn't see much from the road. Their website looks pretty nice...perhaps we'll stay there on the return trip.

We arrive early in Nogales. It is exactly what one expects from a border town. We can see the houses on the other side of the barrier. It doesn't even look like there are roads between the houses on the hill. In America it is prestigious to live in the hills, with the views, but in other countries, Brazil, and perhaps Mexico, the poor live in the hills where there are few amenities of modern living. It's a bit of culture shock for J, who has never really experienced anything like this.

We find the McDonald's, which we think is the right one. We know we are early and we sit and wait. I tell J that since we're SO early, maybe we should go and find his office on our own. He says he doesn't think it's a good idea, but I suspect he's not thrilled about venturing across the border. What he can see so far of Mexico doesn't sit too well with him.

I try to call my connection in Mexico, Jossie, but I can't seem to get through. After about an hour, the doctor is now late, and I realize I've been missing a number in Jossie's telephone number. I get ahold of her and she assures me that someone is on their way to fetch me. I hang up the phone and a few seconds later, a girl in a pink shirt miraculously shows up to take us across the border to see the doctor.

She doesn't speak English. She asked if I speak Spanish and I tell her, "A little". I kid her, "Parlez-vous Francais?" She laughs and says, "No". Unfortunately my French is better than my Spanish anymore. Whenever I try to speak Spanish, French comes out. Their words are too similar and it's confusing. It's a quiet walk to the office since we can't communicate effectively. I make a mental note to grab a conversational Spanish book before our next trip.

When we arrive I realize it's a good thing we didn't try to find the office on our own: Dr. Quiroga has changed his location and is in a new building with his brother who is a dentist. It says "Laser Dental" on the sign, and Dr. Quiroga's name is there, too. We've definitely found him. Relief. He does exist. It's 2:00pm, we're half an hour late for our 1:30pm appointment, but we've made it.

There are no elevators in this part of Mexico. We walk up three small flights of very slippery tile stairs. My incision is aching. J slips on the tile at the top and nearly falls. Visions of J in a Mexican hospital snap me to attention and I urge him to be more careful. Dr. Quiroga's office is the first door on the left. They have the A/C blaring and a huge chilled water dispenser. I quickly wonder if it's really bottled water and decide to pass on it.

It's a decent enough office, and I can see the doctor in his private office. The nurse leads us into his office and introductions are made. The nurse ushers J to a backroom to take his blood, 10 vials in all, 100cc, and Dr. Quiroga and I chat a bit. I ask him how it is that he has blue eyes. I inquire, "Are you Spanish or Navajo". "German and Spanish", he replies. He tells me about his parents who are German and Spanish, that he still has an uncle in Germany. He is friendly and very easy to talk to. I am stunned to find that he speaks English, Spanish, French, and a bit of Italian. Amazing. J is back and we are told to come back at 3:50pm. I asked Dr. Quiroga where we could get a bite, mention the place my fellow LIT infertiles have gone, El Hacienda de la Caballo Rojo. He says it's good but that his assistant in the pink shirt can take us someplace else. I don't want to bother her with that and, frankly, I'm wary of venturing much deeper into Nogales. She escorts us to the corner nearest to the Caballo Rojo and leaves us there.

The restaurant is pretty Americanized, nice and cool inside. I zipped to the bathroom and noticed there were no sinks. I was a bit distressed. But on exiting find they are out in the open, inside the restaurant. That was a bit odd. I wash my hands, then suddenly realize how silly it is to be washing my hands in water that I wouldn't even drink, especially before eating. So like a paranoid American girl, I whip out my antibacterial wipes and douse both J and I from elbow to fingertips.

Chicken tacos arrive covered in lettuce and tomatoes, and I reflect on a prior trip to Baja where, by the time we had gotten to the border checkpoint, I didn't know which end I'd be putting on the toilet. A severe case of "Montezuma's Revenge". I quickly fork the vegetables onto another plate. Raw vegetables washed in the local water can be totally hazardous to one's GI tract.

J eats his chile rellenos washed down with a Tecate. The bill is a whopping $12 USD + tip. Definitely a restaurant set out to get the "rich and stupid Americans". No deal there. We should have taken up Dr. Quiroga's suggestion - it would have been cheaper and probably better. Lest you think that we're cheap, let me tell you this. We have had two distinct, and memorable, heart attacks over restaurant bills in the six years that we've been together: once at Manka's in Inverness, and once at Manresa in Los Gatos. But each of those bills were on par with the French Laundry in terms of quality and price. So why gripe about a $12 lunch bill? Because in Mexico you can get tacos 3 for $1 on roadside stands. They see you coming. The silly American with rolls of bills in his pocket.

Good thing I remembered to take off all of my gold jewelry before boarding the plane. Gold and diamonds only makes it worse.

Lunch down, we head to the pottery shop next door. The shop owner notices I am moving a bit slow and asks how I am feeling. I am honest. I tell him I am in pain. Big mistake. He hails a young local man from outside.

Pottery Shop Owner: "He can get you anything you need."

Me: "But I'll be fine. I am headed to the pharmacy next."

Young Man: "What do you need?"

Me: "Percoset. But I'm going to the pharmacy." I am regretting ever mentioning how I feel at this point.

Young Man: "I can get that for you. I'll be right back."

Then the Pottery Shop Owner shows me a few pots. There is one neat one that interests me, but he tells me it is $225 and that it's made by someone famous. I have my doubts. I also don't want to carry a bit pot on the plane. J suggests that we buy a smaller one. I am feeling like I just don't want to buy anything from this shop. I pull him out of the shop and towards the pharmacy. The shop owner looks sullen, but hell, it's his fault for hailing that young freak to buy our drugs for us. (Mental note: Never EVER mention that you're going to a pharmacy in Mexico).

I buy my mom a huge tube of Retin A and then inquire about the Percoset. The pharmacist tells me that he can't do it without a prescription. A Mexican prescription will cost me $25. So basically I can buy what I want if I'm willing to fork over more money. Bastards. I tell him, "No, just the Retin A, thanks." We leave and head towards the adjacent shops. The young man from the pottery shop has followed us.

Young Man: "Hey, did you get what you need?"

Me: "Yes, I did. We're fine. Thank you."

We duck into a shop trying to lose him. Lots of cheap knick knacks. Nothing worth carrying on a plane.

We step outside. The young man is still there.

I tell him we have an appointment, thanks for trying to help us, but we really have to go now.

3:50pm and we're back in time for my injections. The nurse brings out two small insulin-like needles. Dr. Quiroga says to J, "These are your white blood cells". The nurse takes out a tupperware container filled with alcohol soaked cotton balls. She literally scrubs my forearms with alcohol. Into each forearm she places 4 injections in a square pattern. The needle slides in deeper than as for a TB test, where you usually get a bubble. These are much deeper. I immediately see the injection sites turn red.

Dr. Quiroga says, "This is the first reaction. The redness. This will go away. Then you may get bubbles tomorrow. And itching. Eventually it may bruise."

The injections sting. We chat a bit with Dr. Quiroga about his house further south in Mexico, his office in Ciudad Obregon, and his wife's ordeals with infertility and how two of his children were born through LIT. I mention to him that we had been at a picnic the previous Sunday. A memorial picnic for Dr. Beer. His eyes get big. He wonders why he wasn't been told of this. He is even more intrigued when I tell him that many of his patients were all there, with their babies. I ask him, "Would you have come if you were invited?" He knods his head. I really sad for him - I know the person that organized the picnic. She's clearly a fan of Dr. T, but I can't quite gauge if she's much of a fan of the late Dr Beer. This picnic was for Dr. Beer, but Dr. Quiroga was right in there with him, helping many of these people that I met, and I am sure that they would have loved for him to have been there. He also didn't realize that Dr. Beer's book, was something he could order online. In fact, I am not even sure if he KNEW that Dr. Beer had written a book. I have the distinct feeling that Dr. Quiroga has been sort of kept in the dark about things. It's really too bad, as he's such an amiable man and he's helped so many.

We put our $600 on the table, take our receipt, say our good-byes, and leave. The girl in the pink shirt walks us to the border. I ask her if she lives in Arizona, because she doesn't need to stick around with us in the line. She could just return to the office. She says, "No. Shopping", and she disappears into the crowd on the Arizona side. We muse that perhaps she likes walking patients to the border so that she can go shopping and get out of the office. We hop into our car, let the A/C run for a bit to blow out the hot air, and leave. The old Mexican lady who manned the parking lot waves good bye to us like we are old friends.

The drive back is quick and by 6:00pm we are standing in line at the America West counter. Okay, I am not really standing. I am in a wheelchair. From Tucson, we fly to Phoenix...a nice girl pushes me nearly to the next gate. Literlly half a mile away. I tip her generously. There is no way in hell I could have walked that far. I am in agonizing pain by now and I have started to bleed. I am not sure if my AF has arrived or if I have done some sort of damage walking up that set of stairs, not once but twice. I am worried, but what can I do? The doctor who did my surgery thinks I've already had my period...but I hope that she is wrong. I hope that this is AF.

We eat dinner quickly and then rush to the gate - they are already boarding.

On the way home, we are seated next to an overly chatty fellow, but in time he realizes we were both running on fumes and he puts his earphones on (thank god) and then we both fell asleep in our seats.

I notice it is 11:28pm as we drove off, headed for home. We sleep like the dead that night, and I awake to arms that itch like motherf*ckers. It is intense. The injection sites were now red welts. Saturday and Sunday pass. The itching is intense, incessant, near unbearable. On Saturday the sneezing starts. This is a part of the reaction that I hadn't been warned about. Sneezing and abdominal incisions do NOT go together very well. It has been WEEKS since I sneezed and now everything is making me sneeze. I am in full blown histamine hell. Dr. Quiroga had warned me: "No anti-histimines, no steroids!" Each sneeze I bend over and try to loosen my abdominal muscles...and then I let go, no holding back. Monday comes. It quiets down to being barely noticeable. The welts are now bruises. Sneezing still continues.

It's Tuesday, and I still have the bruising and the sneezing. The itching is totally gone. I emailed Jossie about my reaction and she thinks I've had a good one. (Compared to other infertiles, my reaction has been mild).

I'm looking forward to seeing how much my LADs have changed. One fellow infertile said that she's noticed an inverse relationship between severity of reaction and percentage change on the LAD test. So hopefully we had a nice jump.

We're already planning our next trip but this time, rather than cram it all into a single day, we'll stay the weekend, camp out at the Rio Rico, and party with the other infertiles.

My Scars

The reality that I'm official sterilized slammed into my head this evening. It is the first time I have cried over this since the surgery. But even so, I don't feel that I've hit bottom yet. I know there are more realizations about this that I'll endure. There will be many more plummets down into the abyss until I get to that point. Then I can start the ascent out of the hole.

This sort of depression feels like the beginning of a descent down a slippery slope. You feel confident of your footing at first and then there are small mishaps. You slide more than you thought you would. But you're okay. You walk a bit further and slide a bit more. The bottom isn't quite in sight, but you know that you'll eventually meet it. It's inevitable. But reaching bottom also means the end of fighting the pull of gravity. There's nowhere to go but up once you've hit bottom. I wonder when I'll be there?

When I had my ectopic the doctor performed a laparotomy in order to do the repairs. It left me with a rather large and obvious scar. I saw it every day when I stepped out of the shower. It's a memory that won't quit. The doctor used large metal staples instead of sutures and she was in such a hurry that she didn't bother to do a neat job. The scar was red, thick, and slightly raised. And because it cut right through the middle of my pubes it's been impossible to make the area look at all normal. That was what it was like to have an ectopic in the early 1980's at a Kaiser Hospital. I was all of 15 years old when this happened. Much too young to be having sex, and extraordinarily young to be suffering an ectopic miscarriage.

I had to explain that scar to each and every lover for the last 26 years. Usually I say nothing until the other person asks. I've been asked if I had children. One lover thought that I was lying about not being a mother. Imbecile. It has always been embarrassing when they ask when it happened and I have to fess up to being 15 when it happened.

They'll repeat, "Fifteen?" and I can see the cogs turning in their heads. Stretching their memories to calculate how old they were when they were first sexual. One or two asked me, "So did you get pregnant the first time you had sex?" and when I said, "No", their minds start turning again...wondering, "...just how old WAS she when she first did it?"

The boy that knocked me up was 5 years older than me. I met him when I was a freshman. He was a senior. But he was a year older than the other seniors as he'd been held back in kindergarden. He could have been arrested for statutory rape and I honestly wish he had been. I wished I had my dad or a big brother to take him out for what he did. But I didn't. After the ectopic and an abortion that I had the following year, I tried to leave him. He threatened to harm me if I left him. It wasn't until I was 17 or 18 that I was finally able to get rid of him. I wished so bad that I could have erased that scar. It was a perpetual reminder of him.

From what I can tell of this new suture, Dr. G seems to have cut out my old scar entirely. The old one was 3" wide. I estimate she must have removed a 1" thick ellipse, approximately 5" long. There aren't any visible sutures on the outside, only steristrips hold my abdomen together from what I can tell. Actually I'm sure there are plenty of dissolvable sutures on the inside just none on the outside.

At least I'll never ever have to explain that scar again, or what I was doing at the young age of 15.

I can finally lay that story to rest. It's a bad memory for me and I am so happy that the visible scars of it are now just a very distant memory. And maybe even that will disappear with time.

Lab Tests and More Lab Tests

Three days til we leave for Nogales for our LIT treatment. On June 1st we had a buttload of labwork done in prepartion for this. It's required that both parties have oodles of infectious disease testing before having the leukocytes of the DH injected into the female party. Damned good idea. So this was done, what 12 days ago?

I had a call yesterday that our lab tests were in. So today I called the OB's office to go over the results. I nearly died when she said I tested positive for Hepatitis A and CMV, but as she explained it was positive for "passive immunity" or the IgG fraction. It didn't indicate an infection but only that I had antibodies to these two diseases.

I pulled out my paperwork from last December. My CMV IgG at that time was totally negative. So my exposure had to have been between then and now. A mere six months. I had a eureka moment and quickly called DB's office. They confirmed that it is typical for a person who is normally negative to these diseases to show positive on the IgG fractions after having done an IVIg session....which I did just last month. So that 20g bottle of IgG that was dripped into my arm gave me antibodies to both Hep A and CMV. They should disappear in a few months. Big relief. Oddly my Hep B IgG was at zero indicating that my Hep B vaccination was in dire need of a booster.

Lots of great information was gleaned today.

But there was one snafu. There always is, no?

They failed to run the CMV IgM test (tests for an "active" infection of CMV, whereas the IgG test looks for antibodies from a much older infection). I called around frantically. Most labs told me that such a test would need to be sent out and would take 2 to 3 days to get the results. They would be hard pressed to get them to Nogales in time.

One fine gal over at Health Line Laboratories suggested trying a local hospital laboratory, the reason being: they just do things faster. She gave me the number to the lab at the hospital where I just had my surgery last Tuesday, and sure enough, they could have the test run by tomorrow.

Amazing. I thought I'd figured out most things about the medical system by now, but this is one that I just didn't know. I am willing to bet that they'd be a far better solution for getting IVIg in a hurry, too. :-)

So off J and I ran to have yet another needle stuck into our respective arms. He said, over his Szchewan Shrimp, "I think you're paying these people to do this to me". Snortle.

So in case any of you are interested in just how many tests it takes to get to Nogales...here's a list that'll baffle the mind:

HIV 1 & 2
HIV P24 Antigen
HTLV 1 & 2
RPR
Hep A: IgG & IgM
Heb B: Core Ab & Surface Ag
Hep C: Ab
CMV: IgG & IgM
Abo/Rh (blood typing)

Where is the Mother in my Mother?

I haven't blogged much about how it has been since my 89 year old mother moved in with J and I this last February. Most of the times I've thought that it's gone better than could be expected: she's driving herself around, she's figured out where certain things are (i.e., the senior center, the hospital, Trader Joe's, and, of course, the Mall), and she pretty much keeps to herself.

The latter one is great in many ways. Really it is. But I sometimes think the latter point ("she pretty much keeps to herself") is a bit of a problem for me.

Let me explain.

J gets up at about 8:30am and has to be to work by 9:00am. He's never on time, so he probably gets there about 9:15am each day. Mom is an early riser, but I don't see a sign of her til J is long gone. She gets up, eats alone, and then gets all dressed "to the 9's" to go to the senior center lunch, where for $2, she gets lunch and the attention of Roy, Alex, and Bill, the latter of which cannot ever remember her name and instead calls her "Florence Nighingale".

She's gone til 1ish and then sometimes spends the rest of her day shopping at Target or some new place that she's discovered on one of her "drive abouts".

In the evening she hides in her bedroom reading, or in her TV room watching a movie on "mute" (she can't hear for beans). Lest you think that my 89 year old mother is a frail elderly type, I need to let you know that she's still capable of cutting grass with a push mower, painting the inside of a house, or sewing or knitting a quilt in her spare time. She's in incredible health for her age.

In all, she really has no obligations at all save for washing the dinner dishes each night. She doesn't choose to interact with us, but when we choose to not interact with her she sulks. Hides in her room. Says childlish things like, "Well I didn't want to go anyways" (she said this one just yesterday with respect to the picnic).

She's here in our house but she's not really a part of our household. She's like a long term visitor. She doesn't feel like "family", but in a way she never has felt that way. (For those of you just tuning in, I'm adopted, adopted by my mother's father's sister, or my great aunt, and I never really bonded to her the way I did to my adopted dad. Long story for another day.)

So this last week I had surgery and mom found time to come and visit me at the hospital on both days. That was great. I felt lucky that I had both her and J there with me. I was in the Oncology ward for some reason, and there were a lot of patients there without family or visitors. I'm glad I wasn't one of them. One night there was a lady across the hall from me that was so sick. She was moaning and vomiting all night long. I thought she was going to die and I was going to have to hear her last moan and breath. It was so depressing.

When I was at the hospital they had me fill out a form that, I was under the impression, would be discussed with my s/o and my family. On the form it asked me to state whether I thought I'd need help with certain things around the house, going to the bathroom, dressing myself, etc., and I was to write down and describe which things I needed help with. Along a similar vein, I was told that I was not to drive a car for two weeks.

So flash forward to today. A full week since surgery. I still can't drive, right? So this morning mom gets all gussied up to go to the Senior Center for lunch. I reminded her that I had three appointments today, and that I could not drive myself. And instead of being the accomodating mom I've known for most of my adult life, she instead said to me, "Don't you think I have things that I might want to do?" I was blown away. It's not like seeing the OB/GYN for a UTI test, doing labwork at Health Line, and dropping off documents at the Title Company are frivilous. Not anywhere as frivilous as a $2 luncheon that she can attend any day of the week. She took particular pains in getting dressed quite nicely today...maybe one of her three men was there today and caring for me spoiled things?

But that wasn't it. Then she said, "It would be nice if you gave me a day's notice that you need me to take you somewhere." Me: "Mom, Dr. G told you and J last week that I was going to be dependant on you two for getting around for two weeks. I am sorry if I didn't tell you last night that I had things I needed to get done today, but I am pretty sure I told you this."

Mom's hearing is near to non-existant and last week she broke her hearing aide and had to mail it down to SoCal to get fixed...so very little of what I say to her is getting through anyways. I find that I sometimes repeat myself 7 or 8 times to try to get a point across to her and even after that many attempts I often fail miserably.

Mom doesn't let me know when she "gets it" or "hears what I'm saying". She gives me a blank stare with a screwed up scowl on her face as though it's my fault that her hearing is gone. That scowl makes me feel attacked, and then immediately defensive.

So I'm nearly sure I told her this. But even if I didn't. Why can't my mom say to me, "L, do you have anywhere that you need to go to today?" Why can't she ask? Be my mother? Be mothering for chrissake. But the crux of what is irking me today is that I feel that my mom doesn't know, or doesn't care, that I need her right now. Even though we don't have that deep bonding that I see between other mothers and daughters, deep down inside I feel she should know I am fragile right now, and she should care enough to talk to me to see if, in fact, I do need her.

Sometimes Intuition Works:A Rant

The DB picnic was today...at Vasona Park in Los Gatos. Lots of couples, babies, food, and doctors. I made a few new friends, connected names of those I'd met online to faces in RL, and overall it was a very good experience.

I particularly enjoyed hearing the lab director at DB's speak, Dr. W. He clearly loves his work, wants to continue on with DB's research, and his enthusiasm for what they are doing is evident for all. I mentioned to him that I have been considering returning to the immunology lab, asked him about the UCSF CLS program, if it was worthwhile and he said, "I'd hire you if you had your CLS."

Wow. Let me tell you how tempting this is to me. It's like giving a chocolate chip to a chocoholic.

But there was one thing today that totally rubbed in the wrong direction. And it's weird to write this. A little background first....

At the picnic today was one person there that I'd chatted with online on one of the Yahoo boards. Actually she's on two different, but related, IF boards that I subscribe to. She is always very informative in her replies to people...really goes out of her way to write. She wrote long, drawn out answers to people's questions. She even did research on people's questions: without being asked.

But this excessive outward expression of helpfulness felt awkward to me. Raised the hairs on my back. Yeah, I know I'm a bit distrustful of people and I'm skeptical by nature. But I've also got a great intuition for individuals and for couples. It doesn't often fail me, and in the past when I've ignored my intuition, I've more often than naught found out later on down the road that I should have trusted my instincts. In this case my intuition said, "Wow, she either is a true altruist, a rare person amongst us OR maybe something else is going on there."

So I've sat back and watched. Continued to read her emails. And wondered.

What makes this person tick?

Does she like helping people? Is she just a chatty person? Is she bored? Too much time on her hands? Or, is she that rare person that takes pleasure in being "that person" that people look to for advice? The latter of which is really ego gratification when you analyze it.

I told myself, "It could be any of these, but I'd be guessing."

So this morning this person had sent me an email asking me to *not* ask a particular question at the picnic during the "Q and A" session. My question had to do with DT and DB's respective work and whether it was possible to get DB's replacement to talk about DT's work and how it could work with RI. At least that is how I remember it. So she didn't want me to ask that during the "Q and A" portion. Now that the event is over, and I can reflect on the questions that were asked, I realize that it was really too technical a question for this forum. Most people were interested in hearing about the new laboratory, or how they would work with the new doctor. But this morningm of course, I couldn't know how the day would go and I replied to her that there shouldn't be a problem with asking such a question, and being that I'm not a politically correct person, I'd likely go on and ask it. I should have said that I'd, of course, do this with the utmost respect and tact, but I didn't think that needed to be stated.

So when I met her today, I continued to watch and listen. She pulled me aside at one point, when I was trying to chat up one of the speakers, and said that she didn't want me saying anything about her or the other board members, using their names, their cases, because if Dr. A knew that they were being treated by Dr. C for something that Dr. A didn't believe in that Dr. A might cease to treat them.

Okay. To even worry about this seemed totally offbase to me. I would never "out" anyone without their explicit permission. Why she would feel the need to emphasize this over and over baffled me. Also, the questions I wanted to ask, which she knew of beforehand, had nothing to do with anyone except me, my treatment, my doctors. Why she felt that my question might involve her or the others was beyond me. I didn't bring this up. It would have been seen as an attack. But I was intrigued by her fears, or better put, her paranoia. I asked her, paraphrasing: "Don't you see it as a problem if Dr. OB/GYN ceases to treat you for seeing DB or DT, and that the two issues here are (1) the doctor's ego, and (2), their desire to make money off of treating you themselves. So you would continue to see a doctor who held these two things above treating and healing patients?" I continued by saying, "It is in my best interest as a patient that I ensure that my doctors are all 'on board' with respect to my treatment. I WANT Dr. OB/GYN, DB and DT to all know what I am doing. To talk to each other. To get on the phone, if need be, with each other to talk about my treatment. That is how I am going to get the best medical treatment."

And she disagreed. She dissented. She became angry with me. But what is odd here is that her doctors are my doctors, literally, with the exception of the OB/GYN, where she is seeing Dr. T, who I dropped like a hot potato after he charged me for that consultation. But even Dr. T worked alongside DB. He's 'on board'. So WTF? Where do her fears come from?

At some point in the conversation, which was interrupted for a while, her husband actually stepped in and ever so slightly defended her position, which wasn't really a position, but a madness of sorts. I don't think he was privy to our email this morning but perhaps he was. I'm also aware of the propensity of spouses to defend each other, but I wish he would have resisted the urge to enter the dialogue as he did.

I guess neither of us could even understand what the other was trying to convey to the other, and at some point she and another IF from the two Yahoo boards turned their backs on J and I, really they did, and then they walked off to chat privately.

It was the utmost in rudeness. I was stunned, but thank god that the percoset kept me at bay.

I left with the impression that I was right on about my intuition. My gut instinct says that she wants to be the "expert" that people go to on "Board B", just like JR is on "Board A". I see this as ego gratification and co-dependency (the need to be needed) wrapped into one. Her paranoia about me not asking questions that have nothing to do with her in an open setting or "outing her", when I had no movitation or intention, is an example of her need for "control", where she really has none.

There is simply something not quite right with this gal. IMHO.

When Is Bleeding A Problem? Beware: TMI

My discharge orders from the hospital said that if I have increased bleeding I should call my doctor. So when the bleeding changed from a darkish smudge to bright red, and then soaked through to the mattress pad during my nap today (destroying a perfectly good white fitted sheet no less), I telephoned Dr. G's office. Her PA said that it wasn't anything to be concerned with unless I was topping out at a pad an hour or greater.

Hmmm.....well I'm not at that point.

But god the cramping and pain is bad. Percoset is my newfound friend. I look forward to the close of every fourth hour when I get to take two of my lovely white pills. Don't worry: I know this stuff is addictive. My prescription has no refills and I'm not an addictive sort of person. But for now, I am loving the way it kills pain and gives me a nice buzz...and then I slip so easily off into lalaland.

Wow, now THAT was a percoset-induced digression!

But back to the PA. She also wondered, "Could it be your period?"

Well, maybe. But today is cycle day 22 and I'm not due til the 26th or 27th day. So if it's my period, I am totally early. Maybe all that bashing of my uterus during surgery has brought it on early. But how on earth to know for sure?

I guess period blood has a tendancy to clot. Right? Well this is red, sometimes dark, and sometimes a bit tissuey, like after a ER or failed IVF. So I think it might just be a normal post-surgery bleed.

It's a bit distressing anyways.

If anyone has had this experience post surgery I'd love to hear from you if you're up to sharing some gorey details with me.

******
P.S.,
Thank you to those of you that visited my page and sent good wishes during my surgery! You guys are wonderful. :-)

Discharge Day

They seemed to have forgotten me this morning. No one came to bring in my breakfast and after having taken my morning walk down the hall, I see that everyone else has eaten, except me. Perhaps they were letting me sleep this morning and didn’t want to disturb me?

Luckily my stomach isn’t growling too much.

Today is my discharge day, so I guess I am leaving around 11:00am. I’ve already packed most of my room up in anticipation of leaving.

I’m feeling much better today but my abdomen really hurts when the percoset wears off. My last dose was at 5:00am and it’s still working. Thank god.

They gave me this silly plastic device to test my lungs with, but they told me to breathe INTO it, not to suck on it. So the first two days I couldn’t budge it. I exhaled and exhaled and nothing. It wouldn’t budge. I finally figured out today that they gave me the reverse directions. Oy!

Day After Surgery

11:10am


I can’t wait to see what’s in store for lunch after my breakfast of broth, red jello, and mint tea. A strange combination for breakfast, but being that I’m on a clear fluids diet, it’s pretty creative.

Dr. G said that I’d be here for one day so that it would be considered “outpatient” surgery, but one of the nurses said that this sort of surgery routinely calls for 2 to 3 days of hospital stay. (She likened my surgery to that of a hysterectomy….is this as bad as that? Or worse, because my uterus has to heal from the 4 fibroids excised and the removal of two tubes?)

There’s sign on my wall that states, rather hotel like: “11:00am Discharge Time”. 11:00am has come and gone and Nurse K has just stopped by to say that she’ll be by with my 12 o’clock meds in a while. So it doesn’t look like I am going anywhere fast.

Everyone here is phenomenally nice. It’s amazing. I think Dr. Moustache’s office ought to recruit from here.

I just discovered that my pain button is directly tied into that Dilaudid stuff that was making me fly last night. Wish I could bring the rest of it home with me.


***********************

5:37am

There is a nifty button on a cord next to my bed for pain. I think I’ve pushed it all of four times so far. Wishing I could take this home with me.

They came to check on me every three or four hours throughout the night. Nurse E was swapped out for Nurse A, the latter of whom came in at 5:00am and got me out of bed for the first time. Walking around with a foley hanging out of one’s nether regions is both difficult and scary. The sensation of the catheter being pulled by nothing but gravity for a few seconds while Nurse A affixed the loose end to my gown made me feel like a bathtub with someone pulling on my drain chain. If they pulled too hard I feared that I’d wet myself like a small child.

The sensation of dizziness is still with me, and the effects of the anesthesia aren’t yet gone. As she raised the bed in order to get me to rise, my jaws started chattering away. Nurse A thought that I might just be scared of being raised, but I have reacted very much like this in the past to being put under. But she was also right: I was a bit scared.

So at 6:00pm, Nurse C is coming to remove the foley and then I’ll have to get myself to the bathroom on my own when I need to. I’ve been slugging back my propel throughout the night, impressively filling out my bag, but I think I’ll lay off the juice a bit once that foley is gone.

Surgery Day

930 pm

I’m totally jacked up on drugs as I write this. Flying is more like it.

I was a bit late to my surgery appointment today. There was so much to do in leaving my work in a place where I could be free for a few days. And as I was grabbing my purse to leave, the phone rings and it’s a lady who would like to view the house in Whittier. She’s in her car trying to find the property and wouldn’t I be able to show it to her right now?

I telephoned by German agent gal S and gave her the lead. Gave it. She was stunned that I would do that, but I explained that because I have “an interest” in this property that I cannot ethically represent the buyer. She thanked me and then I was off yet again.

At the hospital, I checked into outpatient surgery. I had a wonderful nurse…she was friendly, took the time to really talk to me, asking me a multitude of questions about my medical history. My mom casually mentioned that she was cold, sitting next to me, and despite her protests Nurse OS dashed off to get her a heated blanked.

Surgery started about a half hour late, somewhere about 1:00. Nurse G came to see me beforehand and reassured me that she had gotten my note from the day prior asking her to double, triple, quadruple check my tubes before clipping them. She said that she would do all she could to save them and her reply was such that I immediately knew that I was in safe hands.

When I awoke, it was 3:00. I shut my eyes 15 minutes elapsed. Then another 45. It’s amazing what these pain killers can do for you. Nurse RR said that whatever it was that they shot me up with (Dilaudid?) was 10 times stronger than morphine. No wonder I slept most of the day.

According to J, Dr. G came by three separate times to tell me the outcome of the surgery. I only remember one instance, and I recall clearly her stating, “You won’t remember this conversation.” I remember bit and pieces, but I eventually go the entire story from J.

There was much more damage in there than any of us realized.

First: I didn’t have two fibroids. I had four.

All gone.

I wondered where she found the other two? Hearing that she removed them and didn’t just stick them with a cauterizing needle made me feel better about them. J mentioned to me that because of their position that if when we get pregnant we would definitely be able to do a natural childbirth. I’m not sure if that’s a huge relief for me. I was talking with GreatGoodFortune about this just three days ago and I felt then that I’d love a c-section. Why risk my bladder and pelvic floor?

But when J told me that we’d be able to do vaginal delivery it was a bit of a relief. Maybe I’m just happy because now I have a choice.

Second on the menu: My tubes were so diseased, so shot, that when she felt them with her fingers she said that there was something gritty in them. I think J said, also, that there was fluid. Hydrosalpinges after all. This is a major “smoking gun”, as Dr. Moustache would analogize, for a reason our embryos didn’t survive. Glad they’re gone if this was the case.

And get this.

I have had endometriosis.

Stunned. I never thought in a gazillion years that I’d have endo. Dr. G didn’t see the endo in the surgery in October but that was when we did a laparoscopy not a laparotomy. The latter procedure, of course allows her to see much more, move things around, etc.

So the tubes are gone. And because Dr. G took the time to really assure me that there wasn’t any means of saving them, I think I will be just fine.

There is still the mourning of my hope against hope of getting pregnant in the way that the majority of the people on the planet do. That might never go away.

But right now, it this drug induced haze I’m floating in, I feel like I will be able to cope.

Vascillating on the Point of Hope

I think Thalia's recapitulation of her dream was contagious. I usually don't remember my dreams but I had an odd one last night that had to do with tomorrow's surgery. It was so tactile, so vivid, that it took me by surprise.

.....

I was on the table in the OR. My lower abdomen was cut open, and cranked open into a rather large rectangle. I was awake and Dr. G asked me to "feel" my tubes where she was going to place the clips. It was a section of tube that was very hard, muscular even. It was kind of white in color.

I laid back down.

Then she poured olive oil into the rectangular hole that was once my abdomen. I understood that this was to keep my organs from forming scar tissue and sticking together.

I thought it odd, but only for a second.

I then jumped off of the table to go and do something. I forget what exactly. It might have been to wash my hands. Then I remembered that I was undergoing surgery and I said to Dr. G, "That probably wasn't a good idea me jumping off of the table like that with this huge whole in my abdomen. My innards might have fallen out!"

I jumped back onto the table. Things faded out from here.

....

Weird.

I am clearly more stressed out from this surgery that I realize.

Maybe I needed more time to process what this surgery would mean to me?

J and I did the Ooh La La yesterday and today I noticed that I had fertile CM this afternoon. Sorry, TMI, I know... But it's a bit late for that, the fertile CM, I mean. I'm on cycle day 18, and I usually get that on day 11 or 12, sometimes as late as day 15. But for for a second I thought, "Hmm....maybe a miracle will happen?", and I realized in that instant that this would be the last time I would ever wonder that.

As I sit here typing this, I realize that I really don't know if I can go through with the fallopian tube clipping portion of my surgery. I just don't know if I can do it. It kills me to think that I will never have this hope again.

God if this isn't 11th hour thinking, I don't know what is.

I stopped writing midpoint to go see J, who was working in the garage at this late hour. I held him and told him that I can't stomach the idea of becoming officially sterilized. That I wasn't sure if I could go through with tomorrow. He held me for what seemed like forever, let me cry till I was all cried out.

I know this is just insane hope for something so far fetched, so "out there", that it's essentially hopeless. But yet I hope.

Is there a cure for this?

Afer seeing the fertile CM I wonder if I can do the chromopertubation test (where they force dye though your tubes to see if they're open). There's a one in a billion chance that it worked this time, yet I have hope. It's just insanity. Why can't I be logical with this? I am normally quite capable of being logical to the point that AA calls me "Logical Linda" when I'm in my typical form.

Truly. I am hopeless in thinking that I can ever get pregnant with these tubes but I really can't see to let go of the idea.

I am going to talk to my Dr. G's nurse in the AM. In this moment, heart aching over this, I honestly think I am going to tell her that if Dr. G doesn't find the smallest trace of hydrosalpinx in my tubes that I want to keep them.

For some reason, a reason that I can't wrap my mind around, I need that hope.

I'm not sure why, but I don't know if I can stand to be without it.

Even if it means I might run the risk of an ectopic, I don't think I can stand to live out the rest of my fertile (major sic) days without hope, even if it is misguided.

We had dinner tonight with a good friend and her ex BF. She, DL, said that she had a friend that had gotten pregnant naturally at 42, and again at 46. Yes, naturally. My heart sank for myself. I felt even shittier for not being immediately happy for that women who was lucky to have two successful, natural, births in her 40's.

I ate the rest of my dinner lost in thought...

Even if it be ever elusive, I want to have hope. I know that my right tube is blocked, and that the left one is mostly blocked.

How to let go of this hope and move on?

I'm just not sure how it's done.

.
.
.

I don't know what decision I'll come to tomorrow, but I know it's going to be made on the spot. J has medical power of attorney over me, so I pray we can both live with whatever decision he has to make, if it came to that.

To Clip or Not to Clip

Two days until surgery. I went to the hospital tonight and gave them three vials of blood. They made me do a urine pregnancy test. They asked, of course, "Is there any chance that you are pregnant?" How I hate that question. There should be a big red mark on my chart: "Infertility patient. Handle with care."

I am nervous. Second guessing, in the 11th hour in typical fashion, whether or not to let Dr. G clip my tubes. And yes, she is clipping them not cutting them. And for this I am grateful because clipping has something like an 85% success rate of reversal. The clips ensure nasty cytokine-fluid cannot get into the uterus, but salvage the tubes in case you change your mind. I am glad Dr. G was a bit defiant and decided against Dr. Moustache's demand for them to be removed. I doubt he realizes any of this.

I will call her in the AM and beg her to do yet another chromopertubation on the OR table. Check those tubes one more time just to make sure that they weren't spasming the first time. My tubes deserve at least that much before I do permanent damage to them.

Nogales

On the 16th we're headed to Nogales for our first LIT treatment. Airfare was horrendous. $750! My travel agent (yes I use one because trying to find the best airfare among 15 websites is a waste of time) said that if we had 21 days advance notie that it would have been much cheaper.

Really?

I checked airfares four weeks out...for our anticipated 2nd LIT treatment. Were airfares cheaper? Not a chance. I know gas is high right now, but why on earth would it cost us $730 for 2 R/T tix to Tucson? What the heck is so popular about Tucson? Isn't it filled with retirees and their RVs? I've seen R/T fares to NYC on Southwest for $200 plus applicable taxes.

Go figure.

A New Ripple in my Reality

The week has flown by and I've had nary a chance to catch up on my blog reading, or to write. I met with Dr. G on Tuesday for my scheduled U/S...and yes, that fibroid is still there. She said that she chatted with Dr. Moustache and that he "insisted" on my fibroids being removed AND he also insisted that my fallopian tubes be removed. She said she was happy to remove the fibroids but would clamp off my tubes instead. I'm not sure what the difference is, but there you have it.

So as of Tuesday, I will be quite sterilized.

And this both depresses and scares the hell out of me at the same time.

I just read that Millie's ectopic burst and that she lost her tube...damn. Jesus christ.

Welcome, to both of us, to the land of the tubeless.

Okay, so I'm already effectively sterile being that my tubes are blocked. But having my tubes clamped off seems so final. And end to the dream that I might one day get knocked up. Yes, it's also and end to the nightmare that I might have an ectopic one day, but the former dream being shattered really shakes me to my core. I don't feel I've given up, that's not it. But I worry that there might have been just a tiny chance, a smidgeon of a chance, that an egg might one day make its way down that tube and get fertilized.

The hell that is my mind says this. Over and over and over:

"What if the reason the dye didn't flow through my tubes during my chromopertubation test was that they spasmed? It's been know to happen in women....what then? Because once I cut or crimp those tubes there is no turning back. What if there was a tiny chance?"

I've been known to have hope where there is no hope. Just look back on how I latched onto Nurse C's assertation that I might want to do another beta when my first one was less than 1. I latched onto that hope like a scuba diver does onto that regulator. I didn't want to let go of the tiniest bit of hope. I was holding on for dear life.

I feel a bit like that now.

I am so fearful to say, "Enough is enough. Just take them out."

But Dr. G and Dr. R both wound up agreeing with Dr. Moustache...and then Dr. Persian did, too.

So on 6.6.6, instead of throwing our much planned event, "Come as the Devil you are Party", I'll be sleeping blissfully the the local community hospital. They're keeping me over night because Dr. G needs to to a full blown laparotomoy instead of the usual endoscopic laparscopy.

I've already arranged to have a plastic surgeon remove the scar, because we know it will be ugly. This is the 4th cut into this area, and the scar tissue is thick and becoming quite noticeable. But he can't do it til 6 to 12 weeks have passed, so I'll have to live with it for nearly 3 months. Ugh.

I'm not sure how I'm going to react to sterilization, this new ripple in my reality. I do like Susan's points about how it can be a blessing. Thank god there's an upside to all of this.