CD8: Bats in the Bellfry

We went out to a Halloween party last night and got home way too late (3AM) - but the cats don't care about my schedule or how much sleep "I" got the night before and were crawling all over me meowing to high hell for breakfast at 10:15AM.

They woke me at 10:05 or so yesterday, too. It's funny how these little felines' stomachs seem to have a circadian clock of their own?

I fell out of bed to feed them. My pattern is to put the water kettle on for coffee, take my meds, feed the felines, then return to the kitchen to make coffee. I must have been exhausted this morning as I vaguely remember opening the dexamethasone bottle (and seeing a half tab and thinking - "Ah, yes, a half tab from when I downregulated last time.") and pulling one out. I remember opening the adderal bottle and thinking, "Wow, it's so full", and taking one out. I think I remember taking a 3rd pill (my EE2) and then washing them down with water.

After feeding the cats, I returned to the kitchen counter where I keep my meds and vitamins and noticed that my levothyroxin bottle was still on the shelf.

Hmmm....and I can't remember taking 4 pills. So I took one. Then wondered, "Did I really take my EE2 this morning rather than this evening?! Crap."

I couldn't remember if I actually TOOK the EE2 or not this morning. I was simply too exhausted. It's a red pill. I'm pretty sure I took 3 pills at first, but I wouldn't bet my life on it.

So now I'm wondering how disastrous would it be for me to take another 0.02mg EE2 late this evening (midnight?) and then go back to night time for my EE2?

It won't affect my E2 blood values - but it may totally tank my FSH further. Is that a bad thing? I'm not sure what to do here.

Darn.

I guess I need to create a fail safe method for making sure I don't do this again. Maybe just setting them out the night before into separate little dishes will be the trick.

How do you organize your meds so that you don't do silly things like this?

BTW: Here's what I'm doing so far this cycle:

Cycle Meds (Dr. Czech):
0.02mg EE2 (started CD3)

Immune Meds (Dr. Strick@r):
40mg/0.4ml Lovenox (started CD7)
1mg Dexamethasone (started CD7)
50mcg Levothyroxin (Since 2009)
100mg 5-HTP
4 fish oil pills (720mg EPA, 480mg DHA)

Experimental Meds (Dr. Czech):
25mg Adderal (Since July 2010)

Supplements
1 g Calcium / 500mg Magnesium
4000iu D3
800iu Natural E
100mcg Selenium
2500mcg B-12
660mg kelp (400mcg iodine)

CCRM Supplements since June 2010? (I'm not a patient here but Mo had success with this so why not try?):
3mg melatonin
4g Inositol powder
600mg CoQ-10 (think they use 800)

Diet:
100% gluten free
Caffeine free
Mostly dairy free (I'm allergic to casein)
Mostly organic veggies
Occasional wine
Fish, meat, eggs

CD7: A bit of understanding about my cycle

I haven't heard from Dr. Czech's office as it's Saturday and my stressed phone message to them yesterday wasn't an emergency, but more a plea for understanding.

I stayed up late last night, until 2AM, reading and digesting. I've read a number of his articles before but I hadn't tried to find any that spoke to the sort of protocol I was on because, well, I didn't understand what sort of protocol I was one! However, I found a few articles of the Dr's online which helped me understand what he's going after.

So. In a nutshell.

The estinyl estradiol (EE2) forces your FSH down and gets your granulosa theca cells to do create more FHS receptors.

Think of it this way: you cut off the FSH but your granulosa theca cells WANT FSH. So they make more receptors to capture whatever FSH comes their way. It makes them very efficient with whatever FSH they can find and capture with their "receptors". They become hypersensitive to FSH and therefore act like cells from a younger person!

So you stick with this oral EE2 until the FSH tanks (becomes normal) and the E2 rises to above 50. He notes that EE2 doesn't cause your blood E2 values to change. Different chemical. So the EE2 gets the FSH into the normal range, gets the granulosa cells primed for FSH. The body's own FSH helps to mature the follicles but if it slow you can add in extra FSH (150 to 220iu of FSH the latter amount if you're using ganirelex or cetrotide).

It's a very low dose cycle - but it's interesting how he's making the body use it's own FSH here and then helping out where necessary. I did see one article where he said that this is not only successful with older patients, but that it helps to really save on costs for IVF drugs.

Brilliant.

It's too bad that his nurses, after a few years of nursing school, and probably multiple years of working for him, don't understand his protocols enough to help calm patients' nerves.

I can guarantee you that he and I will have a very long talk next opportunity. I think he is an utterly brilliant man who is doing studies that aren't what universities consider "lucrative" or those that would entice big pharma funding. In other words, pharmaceutical companies wouldn't want to fund his research because his work shows that 900iu pens of gonal-f aren't exactly necessary. Imagine spending $500 for your cycle meds rather than $10,000? His research money is probably not huge, despite his working a university IVF clinic outpost, but he persists on doing work that is really insightful and meaningful. Seriously, ladies, from what I read last night, I can that this man is one of the few that is truly on our side.

Maddy: Maybe you need to be cycling with Dr. Czech? :-)

Postscript: I just realized that in one month I will be 46 and it'll be time to update my age on my blog headline. I hope to one day edit that headline to speak to a success.

CD6 Hell

Another 81 mile drive to Dr. Czech's office. It's my second blood run and ultrasound. So far all I'm on is 0.02mg of estinyl estradiol (EE2) a day. That's it.

Frighteningly simple cycle.

The ultrasound tech said I only had 1 follicle at 12mm. I freaked out. ONE? Wasn't there anything else. "Yeah, a couple small follicles too small to measure."

Me: "How many? Where?"

Her: "Two on each side".

OK, so a big one at 12mm on CD6, and two smaller ones on each ovary.

I dressed and went to the waiting room, sauntered up to the front desk, and said, "I need to talk to a nurse."

The receptionist said, "I"m not sure if anyone can talk to you for awhile" but go ahead and sit down and they'll call you. Not 5 minutes later I was called by Nurse M who walked me back to one of the other doctor's offices.

I told her, "I really don't understand what the strategy for my cycle IS at this point. The ultrasound tech said that I had one follicle. I am FORTY FIVE years old. 1 in 10 is normal at my age. If you guys are TRYING to just get one follicle I don't understand it."

I was shaking. Pissed.

She pulled out my CD3 bloodwork as it was still too soon for my CD6 work to be processed.

CD3:
FSH 15
E2 26 (my E2 has never been this low that I know of. Hmmm.)

My heart sunk seeing the FSH that high still. Apparently the endometrioma surgery that I did on June 30th really screwed up my ovaries. It hasn't touched 10 since then and right before the surgery it had consistently hovered around 7 or 8. Damned good for 45. But now it's gone to hell in a handbasket. I remember Dr. Italian warning me against the surgery for this reason and I turned him a deaf ear. My mistake. But I thought that the endometriomas would cause more damage as they grew and would slowly shut down my ovaries. Maybe this would have happened anyways?

Who the heck knows.

So Nurse M explained that the "follicle" on my ovary was not likely a follicle. Not with an E2 of 26 (value on CD3). Much too low to be a "functional follicle", more likely a cyst. She said that the other follicles that the US tech said were too small to measure were what they were going after.

OK. So why the hell did the US tech say that the big one at 12mm was "the follicle" and that the other ones were nothing to so small that she didn't measure them?

Holy crap.

You know, the same US tech did my scan in August when I cancelled myself due to having only two follicles...and know I find that she's completely inept? And I cancelled myself due to HER analysis of my US scan?

I am pissed ladies.

I truly love Dr. Czech, but this is reckless.

I was so upset that I was shaking as I spoke with Nurse M. SHAKING. I'm not the type of person that gets that emotionally flipped out. Pissed at crappy New Jersey drivers, yes. But to hear how screwed up things are with my US really gets to me.

Later this afternoon I got a call from Nurse J. She gave me the following CD6 values:

E2 18 (down from 26 on CD3)
FSH 6 (down from 15 on CD3)
P4 0.2
LH 3

Nurse J reaffirmed that the data seemed to show that the 12mm thing was a cyst, not a follicle. The protocol is to continue on with my EE2 until Monday morning, more bloodwork and another US to see if this cycle will kick off or not. Nurse J said that they need my E2 to rise to about 50 (some docs would say 75) or the cycle is over.

I guess that the EE2 that I am taking suppresses FSH, just like a high E2 value on CD3 can falsely lower a FSH value. OK. That worked. It went from 15 down to 6. Bravo.

But I'm not sure how the oral EE2 kickstarts my teeny tiny follicles into producing their own and getting the value up and over 50. Will have to go and read up on this a bit.

Guess I should have taken an endocrinology class when I was premed.

Sigh.

CD4: Pushing Papers

Had to fax in a buttload of medical tests and stuff to the clinic today. I'm missing few things and am feeling frustrated over the pencil pushers who come up with these standardized lists for ALL patients:

Mock embryo transfer: I'm on IVF cycle 9. Can't we just use previous notes? Seriously, does the depth of ones uterus change all that much? Also, I'm not sure that I will transfer anything. My plan is to freeze everything and do a FET to get a prime lining/environment OR to use a gestational carrier.

ABO blood group: Hope they'll take the 2005 test result. I can guarantee it hasn't changed.

CF status: Same as above. That ain't changed.

Counseling from high risk ob/gyn (mandatory for over 45): I've done 4 IVF cycles after my 45th birthday. Do I really need to be counseled at this late date?

Clearance from family physician to do IVF: See above. I just did 4 since my 45th birthday (I turn 46 in November). Also, I have PPO insurance...I see specialists when I'm sick. I don't even have a primary care doctor. Help?

I faxed off a massive stack of tests to the clinic tonight and added a long note about each of the outstanding ones. Hopefully I can update my bloodwork on Friday.

Last on the list, once I have the green light, is to order my sperm to be delivered next week. I'm hoping that I can pick up the canister in person and then drive it to my clinic the same day (or the next morning). I think that the dry ice (or whatever they use) is supposed to be good for something like 3 to 5 days. Hopefully that is true! All I know is that priority shipping for these things can be pricey, but I'll have to weigh out the cost versus the headache of dealing with NYC traffic, parking in the Financial District (sheer hell on a business day), and the overall stress of it all.

Shipping may win out. :-)

And I had a great call with Aetna today. I had to get a pre-auth code from them for my cycle, and the lady on the line said that I could actually transfer into a gestational carrier! A few months ago they said that if I used a carrier that my cycle would not be covered at all. I pleaded with my company that it was discriminatory to bar women with screwed uteruses from cycling or having children.

They agreed.

And now women at my company can use a gestational surrogate. I can't tell you how fabulous a victory that was.

(grinning wildly!)

CD3 Lamentations

I'm getting better at the long drive from NYC to South Joisey. 81 miles each way ... home and back in 3 hours and 40 minutes (including a stop to get gas and another to pick up decaf and gluten free protein bars at WF's). Not bad.

I was at my desk in NYC by about 12:30 ... bummed that in my hurry I'd forgotten to order lunch (our company graciously springs for lunch each day - maybe not so graciously as they know they can eek out an extra hour or more by keeping us at our desks). Wish they'd be gracious with a gym membership to work off my lunchtime inactivity though! ;-)

So, the follicle report is dismal. One follicle on each side. My left side has (unbeknownst to me up til today) grown a new endometrioma, reported on Friday's U/S at 23mm, and today at 14mm. I wish they could figure it out. Dr. Czech said that it might be a corpus luteum (huh?) last Friday. OK. We'll see if it's there on Friday's U/S.

Tonight I start with 0.02mg of ethinyl estradiol (aka, EE2). That's all I know of my cycle for now. Friday (CD6) I head back for another U/S and bloodwork and they might raise my EE2 dosage up a bit depending on where I'm at.

I'm a bit stressed as I'm missing a lot of labwork (though I've faxed it in multiple times) and they want to do a sonohysterogram (had at least 2 in the last year) as well as a "mock embryo transfer" (if they need measurements and notes I can get those for them, too).

I'm not clear on why so much of these tests have to be repeated over and over at great expense to my insurance company, who then whittles down what remains of my IVF insurance money. I'm going to put up a bit of a protest that some of this stuff certainly doesn't need to be repeated. ABO blood testing? Cystic Fibrosis carrier status? As if these are going to change in my lifetime?! I can see things such as EKGs, mammograms, paptests - these make sense to me.

I also have to get on the ball and order my sperm. My sperm clinic is in NYC - and my IVF clinic is in NJ. I am hoping that I can fetch the container Thursday evening and then take it down on Friday morning when I go in. But that seems...OPTIMISITC? Ordering sperm (expensive stuff) before we know the cycle is really going to happen is sorta putting the cart before the horse. The andrology department at the clinics I've been at always want the sperm early on, and they want multiple vials (then only use 1 then they charge you to store the ones that you didn't want or use - it's frustrating). But I personally prefer to order it as close to the end as possible in case I'm canceled for one reason or another. Another gripe from the IF sideboards.

Anyways, I guess I have a lot of stuff to coordinate this week. It feels weird to be cycling again and with a measly 2 follicles. In January it will be 5 years since my first IVF attempt in January 2006. I transferred six follies that cycle. I was so sure I would get pregnant, what, with SIX freaking embryos. But no. Imagine the devastation. (If you're a fellow IF'er, I'm sure you can).

A few months later (May 2006) in cycle #2 I had 15 follicles, transferred six, froze six. To have a cycle with TWO FOLLICLES just slays me. Really it does. It feels dismal, like the end of trying is near.

Right now, I live on those damned stories of patients getting knocked up with 3 or fewer follicles. And I hope.

I miss gluten already

I'm still reeling from yesterday's stress. God it was a horrible day and today wasn't a lot better. Less yelling, yes, but still too much stress.

I'm on day 2 of being gluten free. Mostly casein (milk protein) free too save for a wee bit of half and half in my morning decaf. I'm not sure I can cut that out but I may try soon. Meals are boring so far without a bit of pasta or bread. I'm sure this will pass. When I found out I was allergic to dairy, I learned to make do. I'll figure it out again. Thank god whole foods is chock full of gluten free alternatives.

AF is due today I think - my last CD1 happened in Paris on a Saturday night (guess that would be Saturday afternoon NYC time) - so I might be a day late at this point. I think that since I started the adderal, 2 of my 3 AF have been late. One was, what, 8 days late? Latest I've ever been.

The burning question that I have is this:

"Is it the adderal doing it? Or is it that my ovaries are finally tossing in the towel and headed towards menopause?"

I guess my CD3 FSH/E2 values will tell what's up when AF finally gets around to showing up.

Check in with Dr. Czech

"D" and I made the long drive to Philly this evening to spend the weekend with his boys and, me, for a 7pm with the good doc ... I brought Dr. Czech a copy of the GI's pathology report to check out since my GI condition is highly likely an immune one.

We had our appointment. He read the report, asked lots of questions. Although he's not familiar with Lymphocytic Colitis, he actually thinks that this is a continuum of my other immune issues and that the meds that he has me on may be helping me to get better a bit faster than I would normally have. I hope he reads up on it and gets a few insights though. He's brilliant.

So I got a new Rx for my meds - 50 days of "smart drugs" for my endometrium - then his nurse did a quick U/S to see how things looked inside. I was having some ovarian pain on the right side and wanted to see if I had a lingering ovarian cyst. Nice to know if I'm likely to be canceled sooner rather than later. I'm on CD28 or so, but they found that I have a 23mm cyst on my left ovary, not the right - fuck! (Paid is probably caused by endo as usual). There goes another possible month. But Dr. Czech said not to worry - that I could cycle with it. He said I could have cycled with the three cysts that I had two cycles ago. Huh? The nurses never told me that and I voiced that to him. How frustrating. I told him I'd definitely run any future decisions personally through him rather than his nurses.

So frustrating when crap like this happens. AS IF I have the luxury of time right now? WTF. The rest of the night wasn't much better.

So a bit of history before I get into the next part of my evening.

My other half ("D") and I live in the NYC area. His children (boys, 4 and 6) live in Philly with their mom. We all relocated here May 2009 when "D's" company relocated him BACK to NYC after 14 years or so of living in the SF Bay Area. The deal was that the company had to move all of us or he wasn't going to relocate. So move we did. We have a bit of an arrangement with the ex whereby we occasionally stay at her house when we have the kids for the weekend. This is such a weekend.

However, she usually leaves and we have the house alone. Not this weekend and I didn't find out about this until today. I think I would have stayed home if I had any idea as to what was to come.

So for tonight's appointment, we were running late going to Philly to fetch the kids so that we could go to dinner. It was the "mom's" idea that we take them to dinner even though she knew we wouldn't be there til after 6:30. But traffic was bad - I was worried about being late to my appointment, so "D" took me to Dr. Czech's on the way rather than me dropping him off and then me going there alone.

Well, as it turns out I had to wait about an hour past my scheduled time as the person before me ran late. "D" called about 7:30 and said he'd picked up the kids and that he was headed back my way. He griped that it took him 50 minutes to drive the 11 miles from Dr. Czech's to the kids' house. I said he could either take them to dinner and get me something as I was starving, THEN pick me up ... or ... he could come and wait for me.

He opted to come and wait for me. I'm not sure why he opted to do this, but he did.

Let's just say that it was a huge mistake.

As I mentioned, the doctor was running really late, so by the time "D" arrived with the boys he was hungry, on edge, and in a peevish mood. We left NYC at 4:00 or 4:30 and we were going on nearly 5 hours of "driving around". We didn't get out of there until about 8:45. His boys are 4 and 6, hadn't eaten, and they usually are in bed at 8:00 or 8:30. Then there's the issue of their mother being home that night so we'd have to encounter her on the way back into the house, the questions, the stress...the yelling at "D".

It didn't go good. "D' was pissed off at me for having had dropped me off first, said that I didn't care that he had to drive across Philadelphia to fetch the kids and back to get me. That his ex yelled at him for arriving late (we asked her to drop the kids close to Dr. Czech's so we could get them on time, but it's not in her to be accommodating). I can't tell you how many times I apologized to "D", but it didn't matter to him. The kids actually told us to stop arguing a number of times. It's embarrassing when things get like this.

We left Dr. Czech's and headed for Chili's. But they had a 20 minute wait. He refused to stay and wait. Again, I apologized for how the night went. But he yelled all the way back to the car. In the parking lot. I'm sure people heard. I suggested we get Chinese take out and head back to the ex's house. He said no and quipped that it would look "bad" that we waltzed into her house at 10 something with take out food. Then he drove us maybe 8 miles or more to see if a Ruby's Diner was open. It was 9:40 now. It wasn't open.

So he headed back to the town where the kids live for Chinese take out at long last. We arrived back at the boy's house and I cant' tell you how happy I was to see that their mom was out. "D" got the boys into PJs while I put food on the table. Halfway through dinner the ex came in with her BF and started to gripe that the kids were up that late. How they "must be starving to death". (They told us that they weren't hungry, only thirsty). I immediately took responsibility for the entire situation and explained how my appointment went late.

In an accusing voice she said, "Aren't there doctors in New York City that you can see?"

Me: "Ah...no. Not this sort of doctor."

What I am doing with IVF, my IF, my immune conditions, are none of her business. I confessed nothing. It's just none of her business. I don't want her to know what is going on in my life. It's just too private. I could see her using anything I tell her against me. It's also too personal that "D" decided over a year ago to not let me use his sperm for my IVF cycles. I'm using a donor and it's too painful to share something like that with his ex.

Back to her anger about our being late. I understand her being upset at our being late. Truly, I do. But shit happens in life. Once in a while kids don't get to bed on time. No one suffers irreparable damage from staying up late once in a while. But you wouldn't know it from her reaction.

I also don't "get" D's fear of her. His mania, paranoia, to not piss her off. He treads on eggshells with her. He made a comment that he can't seem to make either of us happy. My question: Since when is it HIS job to make HER happy anyways? There's just something horribly wrong here, I'm telling you.

Then the younger complained to his mom (in front of me) of a stomachache after dinner. It's weird but he always complains of his tummy hurting him. He prefers liquids over food at nearly every meal. He perpetually has bags under his eyes and he has trouble gaining weight. Call me crazy, but I think the kid likely has some sort of GI or allergy issue (not that I'm on a GI kick thing this week - he's really complained since he could talk). I mentioned to him mom that he's always complaining of this - maybe he should see someone. This has been going on for nearly two years, mind you.

"What on earth are you feeding him? He rarely complains of that with me."

That is so untrue. We eat well. Mostly organic. You'd think we were feeding him Dunkin' Donuts for breakfast or something the way she said that.

I mentioned that I had a few chewable petpo bismol tablets in the car and that we could slice one into pieces appropriate for him body weight.

"You can't give kids adult medicine."

Me: It has the same active ingredient as the childrens form...and they're chewable.

She refused to consider giving him something for his tummy or to consider that her little guy may have an issue. In the last year she has also sent her boys to us with untreated Plantar's warts, Athletes feet, uncut nails, dirty hair - all of which I had to point out to "D" to get them treated by a physician. One time I was washing the littlest ones hair and noticed that his scalp was covered with tiny little moles. She didn't even know they were there. I mentioned to them both that he should wear hats as the moles would receive a lot of sun and could go abnormal in later life for him.

How is it that despite the fact that I am not these childrens mother, that I see them only on weekends, that I am the first and only person to actually notice all of their skin conditions and ailments?

If we don't check into a hotel tomorrow, I have half a heart to jump a train and head home tomorrow on my own. I'd rather sit home and watch movies on the DVR alone and snuggle with my cats than put up with this crap.

Some days I'm not sure if I can take this relationship. This life here on the east coast.

Days like this when I feel truly alone in my relationship, I miss the Bay Area and my life back home more than ever.

Diagnosis

I was pretty panicked all day waiting for my 4:45 appointment with the GI. I kept imagining that it would be the worst possible news (how we torture ourselves!?) and how I would react and feel hearing this.

I arrived on time and was eventually ushered into a room to wait. He's usually on time, even came in to grab something and said he'd just be "a minute" but was gone for another 10 or 15 minutes. His hurriedness made me think that there was uncomfortable news to come.

Finally it was my turn.

And it was a mixed bag.

The polyp was fine, nothing abnormal there. Whew. Thank god. And then the other shoe dropped.

"We have the answer to your problem."

Ok. Before the colonoscopy I did stool samples (3 days long) that tested me for every bacterial, parasite, or worm on the planet and they were all negative. I was also tested for celiac disease (blood test). Also negative. So he had taken biopsies during the colonoscopy and this actually told him what the problem was. My understanding was that the only real options were dismal:

cancer
celiac disease (spruae)
chron's disease

So I assumed that it was one of these. My heart sank.

"Lymphocytic Colitis. You should write this down."

He continued to explain that lymphocytic colitics is a somewhat rare condition (affects 1 in 100,000 to 19.6 in 100,000 people depending on what data you believe). It's characterized by lymphocytes infiltrating the colon in response to "something." No one seems to know what really causes it. Sometimes it's NSAIDs that cause it, bacteria or bacterial toxins, viruses, or a purely immune fuckup.

In my case it could be any of these.

NSAIDs? I was on Rx strength for two weeks before this started (surgeon prescribed them after my surgery on 6/30).

Bacteria or bacterial toxins? I had sushi the day before it started out in Brooklyn. I was also eating Prilosec, which drops the pH of the stomach (which, in turn, lets some forms of bacteria run rampant).

Immune conditions? Check. I have psoriasis, elevated natural killer cells. My mom is HLA-B27 positive (tissue type known for immune screw ups) - I'm not but I can't help but wonder if there is a relation here.

I've spent the better part of the night reading. It seems it can go away over time with proper medication, but can return randomly through life. Usually woman over 50 get this. Here I am at 45 with it though, and I suspect that this might be my 2nd bout with this in my life (the first being in 2004 or 2005).

So - tomorrow I see Dr. Check - IVF doctor and Reproductive Immunologist extraordinaire. I hope that he can shed a bit of light on whether I can cycle this month or not. If this is truly immune related, I would be crazy to put embryos into me right now.

I'll figure out what the next steps are tomorrow. In the meantime, there's a GI Medical Article that said that 75% of LC patients that took 8 pills of pepto bismol a day for 8 weeks were cured and stayed stable. The other 25%? They didn't do too bad either.

Clearly I'll be hitting up costco tomorrow to buy industrial sized packages of pepto bismol tablets.


And yet one more possible roadblock to my doing my next IVF cycle.

Sigh.

Colon Polyps and Probability

Most colon polyps do not turn into cancer, but nearly all color cancers derive from colon polyps "gone bad".

From the Colon Cancer Foundation (which we'll assume is a reputable site for deriving statistics):

Probability 1:
"Adenomatous polyps or adenomas—These polyps can become cancerous, and they account for approximately 75% of all colon polyps."

P1 = .75

Probability 2:
"The larger a polyp grows, the more likely it is to become cancerous. Once a polyp reaches approximately one inch in size, the risk of cancer is in excess of 20%."

2.5cm = .98" (roughly one inch)

Therefore,

P2 = .2

Probability of two independent events:

P1|2 = P1 * P2 = .75 * .2

Probability that I have a adenoma that is cancerous: .15 or 15%

I'm really not liking the odds. The doctor said that he felt we'd caught it in time, but according to the sites I've read, it's not easy to visually determine if a polyp is an adenoma by visual observation; it really does require microscopic examination on the cellular level.

I have a follow up with the GI on the 22nd. I'm afraid gime is going to drag until then. I wonder if there are implications for being able to do an IVF cycle, with the exposure to high levels of estrogens and all?

Colonoscopy Day

I've had one colonoscopy before today's, and I have to say that the worst part about it has to be drinking the horrible solution that helps you evacuate your bowels. I really have a hard time drinking the stuff down and verge on vomiting with just about every sip. I was supposed to drink (shudder) 2 liters of the stuff (Moviprep this time) but I could only drink about 1.5l before I gave up. I think my body sensed it was nasty stuff and it took forever for it to pass though my stomach and into my intestines.

So the appointment was for 10:30AM, and the procedure at 11:00AM - Dr. Persian referred me to really nice GI over on 5th Avenue. As always, he was right on time. Amazingly on time. This time though, unlike my first one, they anesthetized me for the procedure. Thank god. Last time, I had my colonoscopy done at Kaiser Hospital in Santa Clara, and it was another story. It was supposed to be a sigmoidoscopy and the doctor didn't give me so much as a valium. Then she decided midway to turn it into a colonoscopy. OMFG. It was horrible. I could see the scope trying to turn the corners from ascending to transverse colon...the skin moving up and down....the pain. Egad. I had to clutch onto the table to keep from falling off of it: no bars to provide safety. I don't know what that doctor was thinking but all I can say is never get a colonscopy at the Santa Clara Kaiser. Never.

This time it was much better.

Anyways, I woke up feeling OK, but filled with air which was rather embarrassing for obvious reasons. Why they can't remove it when they are done is a mystery to me.

It turns out that it was a very good thing that I went in for this procedure. About 20cm into my colon, the doctor discovered a 2.5cm large polyp in the sigmoid colon. Anything over 1cm is considered large, so this was "very large". It filled up the entire lumen of the colon. Holy crap.

As he explained, had I left this for a few more years, I might be looking at colon cancer. There's still no 100% guarantee that what they took out of me isn't cancerous but he cut it out as low as he could and they'll examine the margin to see if the cells are all normal.

He left me with a paper that actually had photos of the area, before and after. It's shocking how large it was and how empty the area was once it was removed. The notes said that he went in all the way to where my appendix was removed, taking biopsies along the say. Nothing else was visually noted as being "abnormal". So we'll see what the biopsies show. Whether I have celiac or Chron's disease. Before leaving, he clarified that the polyp doesn't explain why I've been sick since mid July so we're still on the hunt for the cause of that. If nothing turns up in the biopsies, he'll be putting me on some super antiobiotic that's supposed to kill everything in my GI tract and then I'll have to repopulate my flora. That actually sounds quite scary to me. Gulp.

What if even that doesn't work? I wonder what's next? This is what'll be on my mind the next two weeks. If they find something, it's likely Chron's or celiac disease. If it's not, then I have to deal with this nasty antibiotic. Neither outcome seems safe to me. I read online these horror stories of people winding up with colostomies, carrying bags around for their BMs. I don't want to be that person.

So I'm taking it easy today. Trying to stay positive. Sleeping, moving a bit slowly, just trying to take care of myself and count my blessings that I went in for this procedure.

Fingers crossed for a clean pathology report in 10 days (for the polyp) and that they find some harmless cause to my GI issues.

And then I went and took a break

I sorta dropped off the radar there. I was hoping to get started with another cycle after the dismal cycle where I had only two teeny tiny cysts...but that all went to hell, too. (MusicMakerMomma - I saw your post about my disppearance. I am sorry about not replying right away. I was out of the country for a bit, then on the west coast, and here I sit in the Philadelphia airport blogging for the first time in a month and a half. :-)

Two periods ago, I went to see Dr. C - I was about 7 days late for my period, something that NEVER happens to me. I was on edge as to what was going on with my body. Things didn't feel quite right, and with good reason. Amazingly that dormant right ovary had waken up, but rather than having antral follicles, I was blessed with three ovarian cysts: 2 on the right, 1 on the left. And they were grouped from about 15 to 22mm. The first thing I wondered is whether my late period had swung things out of sync. Maybe they were functional cysts? If so, I could trigger in about 2 days and do a cycle without ever so much as a drop of Gonal-F. But alas, the E2 came in normal, implying that they were cysts, not follicles. Sigh. I was bummed. But what it really meant was that the cycle would be canceled.

On the bright side, the right ovary has indeed woken up.

Fast forward another cycle. Mid September I hop a plane for Germany and France for work. The last day of the trip, AF arrives. Perfect. But again, I was put off from cycling by my GI who wants to do a full colonoscopy before I cycle. I've had chronic "looseness" since two weeks after my surgery (started about July 14 or 15). Nothing has helped. I've done full courses of cipro and flagyl to hit gram +/- bacteria. I've been tested for every bacteria, parasite, protozoa - tested 3 consecutive days for everything just to be sure nothing was missed ... all the tests were negative. They tested my thyroid (normal), they looked for antibodies to wheat (implies Celiac Disease). Normal, too. He's concerned that I might have Chron's Disease, but I doubt it. I've been scoped and biopsied before and it wasn't there. But he said that it can pop up randomly - he said he's seen a person test normal for it, and then test positive six months later. (Makes me wonder how accurate the tests are?) He feels that doing a cycle before we know for sure about the Chron's could spell doom.

I canceled again. Actually, I never made it to see the RE this time. I just didn't appear. I should call him and fill him in on the details just so he knows that I'm still out there.

The GI is probably right and his wife, an OB/GYN that did a fellowship with my surgeon, Dr. Persian, is hip to the theories that I'm operating under. I'm just in one damned hurry to cycle and this perpetual putting it off when I'm about to turn 46 is making me crazy. But, on the bright side (there always has to be one), my ovaries might be fully healed by the next cycle, the adderal may have kicked in to cure my endo issues, and it could be a stellar cycle.

So, I've been eating probiotics up the wazoo. Probably 4 to 8 times what the bottles/boxes say to try. And finally, things are starting to feel a bit better. Oddly. So my scoping is set for Friday, but now I'm a wee bit worried that I might set myself back if I am indeed progressing. What to do? I would hate to cancel the appointment, hoping I am getting better, only to relapse and then find myself starting at yet another canceled cycle.

Sigh.

That's where it's all been at. One thing after another. No progress whatsoever.

My apologies for dropping off the face of the planet like that. When it gets to stressful for me to deal with, I tend to run off and hide.