Empty Egg, Empty Mind

I had a dream last night that I was in my childhood room and it was a total mess. There were clothes all over the floor and piles and piles of crap everywhere. I started cleaning up and when I finished it was neat and tidy. I felt better but I still didn't want to live there. I looked around and I felt somewhat depressed. What does that mean?

I feel like I am in the process of becoming empty. It seems like there are these cycles in life. I'm in this free-float state where I don't really know what I want to do, I don't have a purpose, I'm not sure what I want in my life. I've been here before. It makes me question everything about my life. I am that person to whom people say "You think too much." Yeah, thanks for that. Believe me, there are days I'd rather not think.

I met a women, another patient, at the cancer agency. She has stomach cancer and has been told that there is not much more they can do. She had been a flight attendant and had travelled a lot. She talked about this one trip to France that had been a magical trip. She described how she was visiting this small town and happened upon this festival called "Les Batailles des Fleurs" (Battle of flowers). Boats of all kinds crowded into the bay and people on the boats threw flowers at each other. So, this woman rented a small boat and rowed out in between these huge, old schooners and watched the carnations and roses float above her and fall beside her in the water. Isn't that the most beautiful image?

Someone told me once how difficult times provide a contrast or barometer for the ecstatic times in life. I guess that's the whole yin/yang thing. If I didn't know what cold was, how could I know what hot is? I'm emptying out so that I can fill up and begin again. I'm crying so that I can laugh again.

It's been 5 months since I've had a period. 5 months. My body must be so confused. My hcg should be down below 5 in the next week or so, in which case I should be able to ovulate and then have a period. Dr. H said that the chemo sometimes interferes with the menstrual cycle so I might not get it until after I finish chemo. I am looking forward to having a normal cycle again.

I found out that the methotrexate drug is also used to treat brain tumors but it's used at a much stronger dose. According to my nurse, methotrexate is one of the few chemo drugs that passes the blood-brain barrier. So some of my brain cells are being killed off. Hence the phrase "chemo brain". I tend to be a bit less sharp in the few days following chemo.

I've done much better in the past few days than in the previous treatments. I wonder why? Some family members kept telling me that the chemo may be cumulative and the side effects may get more severe. That was very reassuring of them. Fortunately, that hasn't been the case with me and I'm doing very well this time around. I also haven't gotten sick on top of it. Sometimes you can get colds and other things because your immune system is down.

The apartment hunt continues. I suspect that I'm trying to distract myself and create a purposeful project so that I can feel that this time isn't wasted. Silly. I need to get that I am enough. It's not what I do or accomplish but who I am and how I am in the world. I realize now that I've been stressed out since April when I had my first miscarriage. My body has become acclimatized to anxiety and seems to want to produce that state even when there's nothing to be anxious about. That's something new to look at. I resolve to let myself relax and do nothing.

Decreasing hcg levels

I was interested if there is any kind of pattern to hcg drops (haven't found any pattern so far) so I did a survey of women on one of the forums I am on. There is also some women who posted their decreasing levels here. Please contribute to the survey and post your levels in a comment. Click on comments at the bottom of this post.

My levels with a complete molar pregnancy:
Pre-d&c: 200,000+
Post d&c weekly draws:
29 659
3 792
3 034
3 409
4 400
Chemo - methotrexate and dactinomyacin
Every two week blood draws:
270
14
still going....

From the survey:
Complete Molar Pregnancies:
A.) 250,000 pre d&c
weekly draws:
6300
149,000
Start chemo with weekly blood draws:
78,000
769
161
60
22
11
4
Partial Molar Pregnancies
A.)Pre D&C 123,000
weekly draws:
1,659
240
58
15 and still going

B.)ultrasound, no heartbeat at 7.5 weeks
d/c within a few hours and hcg at 2204
1 week later - Hcg 10
5 days later - ovulated
weekly:
Hcg 0
Hcg 0
first period
Hcg 0
ovulated

C.) 160,000 pre-d&c
weekly draws:
2509
583
190

D.) 250,000 pre d&c
weekly blood draws:
529
51
11 and still going

E.) 101,000 after second d&c
week blood draws:
1600
232
98
23
12
less than 5

Levels down to 14!

At the Cancer Agency. It's 9:45pm. I've discovered the SILENCE button on my IV machine so the bloody thing can beep all it wants because I'm not giving it any attention. Machines do not run my life.

I'm grumpy. I was being a drama queen yesterday about the apartment. There will be others and it wasn't perfect and there will be plenty of other nice places to live. I need to stop my bitching. I really don't have it that bad and I hate being around myself when I complain. I hit SILENCE again...what was that like 30 seconds. I'm just too damn lazy to plug the thing in so the battery is low. Hang on....there I plugged it in.

New topic! My urine is not alkaline. Not anything that anyone would normally worry about but this chemo requires that I have alkaline urine so that I don't fuck up my kidneys. Boy, I am in a fine mood tonight. Oh yeah, and the nurse (who is very nice and I'm complaining again) forgot to turn the chemo drip on so I'm going to be an hour late getting out of this place. Not a huge deal but I am annoyed. So back to the urine. When I test my urine with these pH test strips I do not have alkaline urine. So I need to check one more time in a little while and then if it's not alkaline, then what?? I think they talked about a sodium chlorate (?) tablet. Whatever. At least they found a good vien this time for the IV.

My doctor basically told me to suck it up this morning. No, she didn't use those words but that was the general gist. I asked her about the discrepancy of the wait times. She has said 12 months and the other doctor (her associate) said 6 months. I shouldn't have mentioned his name. She said, and I quote, "You've probably been use to setting goals and this is frustrating but these kinds of experiences build character and make you who you are. You will get better and that's the most important thing. It could be a lot worse." Yes, that's true. Is that why I'm ranting here because I know I don't want to be complainy and I've had and have a good life. I don't want to be told not to complain even though I know I slip easily into it. I come by it honestly. My father is the king of complaining. M spent an hour talking with him over the phone trying to help him with his computer problems and my dad didn't even say thank you. When I teasingly asked him if he had thanked M for his help he said "well I still don't know what's wrong with it". "Just say thank you dad." "Okay, tell him thank you." An hour later he phones back, after he's tried M's suggestion and it worked. My dad's not so bad. I love him very much. He does complain alot though and doesn't always give thanks. I want to be grateful for things, look on the bright side of things, see the glass half-full. But who am I kidding, it doesn't come naturally. I will try though. I needed a poor me day today.

Enough, I've got to go test my pee.

Apartment miscarriage. We didn't get it. Feeling down. Can't life throw me a frickin bone? Shit. Maybe I'm not ready for this yet. Putting myself out there to be rejected. I wasn't really thinking about it that way. I guess I just thought that it would all fall into place. I also didn't expect there to be any competition. Must not dwell too much on this. It's not that important in the grand scheme of things.

All ready to go to the Cancer Agency tomorrow. Aren't I pathetic.

People are so lovely. I emailed Jen (of Addition Problems) and she has replied with two very thoughtful and supportive emails. She and her partner had a PMP in 2004 and she narrowly avoided chemo. Now they have a beautiful daughter. Yay! I'm so glad that the internet exists and I can connect with other women who are going/or have gone through this. I've been encouraging other women on mymolarpregnancy.com to begin a blog. It's another way to create community.

M and I are in limbo land at the moment with the (potentially) new apartment. I've been noticing how the feelings that it's bringing up is similar to that time in pregnancy (after a previous loss) before you have the first ultrasound. There's hope, fear, excitement and a roiling stomach. One minute, you're sure it's going to work out fine because the universe loves you and the next minute, you're realizing how fragile this new life is...how it might not work out again. I musn't be negative. It all felt so right yesterday that I need to ride that feeling and not get all caught up in the fear. It doesn't help a damn bit.

We've put in the application (along with another couple that was there viewing the apartment) and now we have to wait. M just looked up Iranian business practices on the web to try and give us some insight into the way that our rental management guy conducts business. Apparently, one needs to be patient because decisions are not rushed, punctuality is not the norm (though it's expected of you) and what was the third one? So far, that's a check and a check. There was a major language barrier and we were trying to get the place for the 15th, instead of Oct.1st and now I'm wondering if he will take the other couple because they could move in right away. However, they were from Australia and did not have references, where as we have lived here, at the same place, for 5 years and we have a excellent record (never missed a rent cheque).

If this is how competitive it is to get an apartment, I can imagine what it's like to be in the market to buy. The Vancouver real estate market is insane right now. There's no way that the bubble is not going to burst. We would like to own but it's not going to happen for awhile.

Oooo, ooo, the other good reason for living near a university is that there likely won't be as many pregnant women around (is that crazy talk?). Whenever I go to Granville Island, which is where I always walk to from where we live now, there are pregnant ladies everywhere. I mean, I'd hang out there too if I was on mat leave or had small children. Everytime I'm there (2 or 3 times a week) I spot about 5 pregnant ladies. Then it becomes like a litmus test for me for how I'm feeling that day about pregnancy, babies, loss, the 12 month wait etc.

Okay, I'm really procrastinating about grocery shopping. That's because if I go grocery shopping then I'm that much closer to going to the Cancer Agency tomorrow. And I've got to get up so fucking early (pardon the French). Alright, alright, I'm kickin' my butt out of this chair and driving up to the IGA. No more hospital food for me. Blak!

We may be moving!! We went to look at a place and I felt that 'click' when you see a place that you really like. It's got great views, balcony, two bedrooms, insuite laundry, a really nice kitchen and it's in a quiet neighborhood. Both of us will be closer to work. Yay! We will probably have to pay a month's rent here because they want someone to move in right away. It's worth it though. A new chapter. I'm feeling more optimistic about things.

I'm getting prepared for the Monday visit to the Cancer Agency. M's going to come for the day and then go home to sleep like last time. I've got a list of questions that I'm going to ask Dr.P. I won't be eating any hospital food this time which means that I'll be cooking tomorrow for us. I can't believe I already have to go in again. It doesn't feel like two weeks have passed. Hopefully the 12 month wait to start ttc again will feel like this...."I can't believe it's been 12 months already!!" I'm trying to get back in that mindset of "No, we're not quite ready yet. We'll probably start trying in a year or so." I wonder if I can convince myself of that? Not likely but I think I'll give it a try.

I feel pretty good today. I'm not sure what has shifted but it feels like something has. I am still enjoying blogging but I'm wondering if my purpose has changed. Originally, I thought that it may be useful to others who are going through this. I know how rare it is and when I looked for a blog I couldn't find much, especially by someone who had gone on to have chemo. I was really interested in people reading about my experience and was looking forward to comments. Maybe there are some people reading this but I don't get any comments. So I have changed my focus somewhat and I'm writing for me. I want to document this time in my life and the writing seems to help. And hey, if this happens to help someone along the way then all the better.

I've been searching for a new place to live. I think that M and I could use a total shift in environment...a new chapter. So there are a few places opening up near one of the universities and it would be closer to our workplaces. I'm hoping that that works out. There are a lot of places around here that remind me of my two previous pregnancies. It's like when you break up with someone and certain places remind you of that relationship, times you spent together and how you felt when you were last at that place.

Along with that theme of change, I am very open to forming some new connections with people. I want to meet new people and make some new friends. Sometimes it feels hard to do that in this city and other times it all just falls into place. I'll have to join something....what though? Yoga, pottery, fitness class,....? I've signed up to a Knitting meet-up and the next one is on Oct.2 I think. I'm going to avoid talking about the chemo I think. That would be a conversation stopper. However, if it comes up, I won't avoid it.

Teiwaz - Warrior Energy

"This is the rune of the Spiritual Warrior. With Teiwaz comes certain knowledge that the universe always has the first move. Patience is the virtue of this Rune. Teiwaz is a Rune of courage and dedication. In ancient times it was this glyph warriors painted on their shields before battle." (The Book of Runes by Ralph Blum)

I drew this rune today and it seems to fit. I am struggling with accepting that all of this - pregnancy, miscarriage, molar pregnancy - it is not at all within my control. I am trying to accept the year long wait, these 4 months off work, the chemo, the loss of a baby, the loss of another pregnancy. It seems to have become a practice with each breath...whether I can accept everything that is happening to me.

I was writing last night about how I tried to come to terms with M not wanting to try for a baby when I did. I was ready a lot earlier than he was (two years earlier as it turns out). I knew that the more that I brought it up and put pressure on him, the less he would be willing to consider it. So, I decided that I needed to let go of that fear of us never having children because if I held on to it, it would contribute to its delay. Somehow I was able to let it go....for 2 years. Now, here we are and we are both so ready and again I am having to face my fears about this. We would have been expecting our first baby this October if our first pregnancy had worked out. We now have a year wait from when my hcg levels get to zero (I'm hoping that that's within the month). Again, I have to find a way to have patience and accept this. I want to work to create a full life for myself and agonizing about something that I can't change will not lead to feeling whole. How did I do it last time? Of course it is different than last time. I didn't have a baby(or the potential of a baby) and then see it die. My dreams and hopes were still intact. Will I feel this ache, this longing, for the whole year? I refuse to be this loss. I'm committed to grieving when it is appropriate but I do not want to become this loss. I'm sure once I am working again that much of my attention will be occupied. Currently, I have so much time on my hands that it's difficult to be distracted and I am reminded every two weeks by the trip to the Cancer Agency. The next visit is coming up this Monday. I can't believe that it's almost here again already. I know that I am more than this experience. I can and will get through this.

Chantelle 2.0

My husband has dubbed the changes he sees in me as Chantelle 2.0. As in, the newest version of Chantelle (he's a genius computer geek). He says that Chantelle 2.0 tells people how to treat her and she stands up for herself more often. He also says that Chantelle 2.0 crys more easily and doesn't put up with people's bullshit. I love the way he helps me to see myself in new ways. He is my best friend. I love him like a poem loves a reader, like coffee loves a cup, like a blog loves words, like soup loves a cold, rainy day. I had a dream/s last night and all of our male friends were in it and they each gave me a hug. It was a nice comforting hug from a friend. And when I woke up my husband gave me a big hug and I just started to cry. It was his hug, his love that I was feeling in my dream.

I went out with a friend today and I was not looking forward to explaining my situation yet again. I know that sometimes she (lovingly)rushes in to try and fix things and make me feel better. Chantelle 2.0 was able to tell her about a poem I recently read (she's a poet so I knew that she would listen up) and one of the line says "I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it." She got it and I was so thankful. She also shared with me about how, even now, with her babies grown into children, she still feels the fear of them being taken away from her. So, it is a continuous journey. It is life. With all of the beauty and pain and joy and loss.

Structured self-care healing plan:

- Yoga (I went today!!) every day or other day
- Weekly counseling session
- Weekly walk with friend
- Daily writing/blogging
- eat at least every 4 hours
- drink lots of water/fluids
- Knitting group
- Dancing at night in the dark
- Perhaps massage?

I am developing some structure for my days and it's all about self-care and nuturing. I can't believe I can spend all of this time focused on me! What a rare gift. I'm coming to accept this gift because it feels much better than worrying or living in the future or the past.

So while I was sweating away at yoga, I thought about how there are all these classes for pregnant women and mom and babies but there are no specific classes for women who are grieving the loss of a baby. Why is there no recognition of this experience in our society? It makes me so annoyed! The whole message is "get over it" or "grieve in private". There are all of these women out there trying to make it through such a difficult time and there is really very little support. Am I identifying too much with my loss? I just want some validation.

I came across two cards today that were congratulating me on my first pregnancy. When that pregnancy ended in miscarriage, I did not receive condolence cards from those same people. Why is that? Are people afraid that you will take it the wrong way or be reminded of your loss? I feel that it should be treated like a death in the family. Maybe other women who have lost a baby feel differently. Anyone who might be reading, what do you think?

I want to develop some kind of ring or charm or something that indicates to other women that you've had a babyloss. Often I find myself looking around at various women and wondering, "have you lost a baby?", "have you?", "what about you?". I was in Safeway awhile back and I noticed this pregnant, 40-something year old mama nearby picking out some peaches. We struck up a conversation and I kid-you-not, I nearly asked her if it had been easy journey for her. Would she have been offended? Perhaps I should have taken the risk but I was afraid I'd start crying into the peaches.

Day of Rest

It's Sunday and I'm musing about religion. I grew up Catholic but haven't been a practicing Catholic in awhile. I didn't get married in the Catholic church and that caused a very devout auntie of mine to write me a letter saying that "The Catholic Church is not a smorgosborg you know!". I laughed about that one for awhile. I wonder if I will have my babies baptized? Yes, I will have babies one day.

I could use some spiritual therapy. I went to a Crystal singing bowls session awhile back before the chemo started. It was very unusual and so cool. The therapist set up crystal bowls in a circle around me and then played them. It was the most amazing experience. Certain pitches caused me to feel tense and uncomfortable while other tones made me feel like I was melting away.

I have urges to visit a Catholic church. I remember going into Notre Dame church in Paris one early morning. It was very peaceful. There's something about being in such a beautiful, quiet, sacred building. I don't agree with so much of what the Catholic Church spouts but I like many of the rituals. I like lighting a candle below the Virgin Mary statue and saying a prayer for a loved one. I like some of the stories of saints. I like holy water and Virgin Mary medals and rosaries. I have a friend who understands this. She doesn't go to church either and has huge issues with the Catholic Church but she talks about feeling comforted by many of the rituals. She asked to see a priest when she was in the hospital, in excrutiating pain from a back injury. They prayed together.

Yes, I need that. I need the quiet calm that comes with prayer and a space devoted to peace. I'm not sure where I should go but perhaps I could to explore a few places. It's another place in life where I don't really feel like I fit in but I don't care. I'm okay with being complicated.

March of the Penguin Chantelle

"Each winter, alone in the pitiless ice deserts of Antarctica, deep in the most inhospitable terrain on Earth, a truly remarkable journey takes place as it has done for millennia. Emperor penguins in their thousands abandon the deep blue security of their ocean home and clamber onto the frozen ice to begin their long journey into a region so bleak, so extreme, it supports no other wildlife at this time of year. In single file, the penguins march blinded by blizzards, buffeted by gale force winds. Resolute, indomitable, driven by the overpowering urge to reproduce, to assure the survival of the species."

Today I feel like one of those emperor penguins trudging back to my feeding grounds in an Antarctic blizzard after having bungled the egg pass-off to my mate. As I trudge through the mind-numbing cold, I wonder if there is any meaning to any of this. Maybe it just happens because it can. Because shit happens. Emperor penguins incubate their eggs on their feet. Males and females pass the egg off and sometimes, the stupid pass-off screws up and the egg goes rolling off into sub-zero temperatures. What a fucking waste!! Just like an empty egg. Waste. Waste of possibility. And not only does that penguin lose the possibility to reproduce for that year, but to add insult to injury, they have to trudge through a bloody blizzard to get back to where the food is and they have to leave their penguin tribe behind. Is this the makings of a hero's journey tale?

Is there meaning in any of this? I dance between two perspectives. One perspective is that the universe is chaotic and this just happened to happen to me randomly. The other perspective is that there is some meaning to this. Not like there's a reason that this happened but I can choose to find some meaning in this whole experience. There has to be some gifts or some new insights in all of this. At least it makes me feel more whole when I consider that possibility. Haven't yet figured out the gifts this experience has offered me.

I've been noticing how I choose to identify or not identify with my experiences. So, I identify with being a teacher, a woman who's known loss, a daughter who was raised by her father, a wife, and an aspiring artist of some kind. I don't identify with being a cancer survivor or patient of any kind or a woman who's had a molar pregnancy and yet here I am blogging all about those things. It's just that the grief compels me to write. And when I start tugging at the grief thread, it just seems to keep unraveling to all the other losses in my life...the ones that I try to keep hidden and under control. I feel old and weary today. I feel tired to the bone. I feel naked and exposed to the bone. I feel like a grieving, marching emperor penguin.

I want to run away to Nelson. I have this over-powering urge to pack up all of our stuff and drive far away. I suppose this would have to wait until after I finish all of the chemo. At the moment, I can't even fathom going through this again and again and again. Oh my. I'm feeling sorry for myself today.

Someone explained their experience of grief to me. It comes, they said, in waves and the waves might be gentle or they might be like huge surf crashing down on the beach. How would I explain my grief today? Okay...I'm a turtle that's climbing up the slope of beach. I cover some ground and then a giant wave comes and sweeps me back down the beach into the ocean where I have to once again work hard to make my way back up. Oh yeah, and did I mention that the waves wash my eggs away too? So I'm paddling around trying to rescue my eggs but I know they're doomed and I'll have to wait another year before I can lay more eggs. (Sigh) Well, it's not exactly poetic but it seems to capture how I feel.

About Nelson. I've always wanted to move there. It's a smaller, artsy town that is located in the most beautiful area. What would I do there? Grow a garden. Work at a bookstore or a cafe. Teach. Some people would probably say that I want to run away from my problems, that I want to forget about all this ever happening. Who can blame me?

Feeling human again.

I woke up feeling fairly normal again. The only thing is, everytime I think of the hospital food I want to hurl. I mean, I guess that's not so weird but why is it crossing my mind? Maybe they should give Stemycil (anti-nausea drug) to everyone who eats at the hospital.

M went to get groceries last night at the little store and the owner rushed out as M left to give us flowers. He had somehow intuited that we had had another miscarriage (if only he knew the whole story...maybe we'd get free groceries). How did he know?? The owner knew about the last one because he had asked when we were going to have kids and M told him that we had had a miscarriage. I was so proud of M that he was so open and honest. I wasn't there but apparently he was so nice about it and took M's hand and said he was so sorry. That's way better than I've been treated by a bunch of people.

So how did he know about this pregnancy loss? Is there some magical food buying formula that he's stumbled upon for telling if a woman's pregnant and then miscarried? Did he guess? It's a mystery. I wish more people could have that kind of radar and then give me flowers or gifts. So far, I've received 2 'Get Well' cards and 0 'Sympathy' cards. I guess people don't really consider this a loss or maybe they stand there in front of the Hallmark cards for a really long time and debate about which would be the more appropriate card- sympathy or get well. I guess 'Get Well' works for a miscarriage too because I most certainly am not well after my miscarriages.

On another topic: I received an email back from Aliza Sherman (owner of babyfruit blog) which I was really impressed by. She must be incredibly occupied considering she has a baby, a partner and a writing business.She's also making a movie about miscarriages. She's had 4 or 5 miscarriages herself. She replied to my questions about how to get health insurance to cover alternative therapies (like accupuncture and massage). I'm amazed to see all of the blogs on infertility, trying to conceive and miscarriages listed on her blog. I even found one called http://additionproblems.blogspot.com
that documents a lesbian couple that had a partial molar pregnancy after IVF. I haven't found many blogs on molar pregnancies. In fact, I haven't found many pregnancy loss forums that have a section for molar pregnancies. They often have a section for ectopic pregnancies, but not molar. Hmmmm....I made a request at 'Facts about Miscarriage' forum to include a section on molar pregnancies but they haven't posted a reply yet.

I can't believe I've been up since 8:30am. Maybe I've got a new sleep cycle going on and I'll be able to go to yoga tomorrow (9:30am). Things are looking up.

Chemo hangover

Okay, so I want to remember how I feel the day after treatment. I had forgotten that this is how I feel. I am exhausted. My head hurts and my body feels weak. I haven't had a hangover in a long time but I think this is what I remember it being like. I just want to be horizontal with covers over my head and drinking lots of water. Moan. Moan. Moan. I can't imagine going through this 2, 3, 4 or 5 more times. I can't think about that right now.
Sad, sad post. Will feel better tomorrow I'm sure.

When exactly did my doctors start talking chemo?

I am one of those people that want to be totally prepared and know what to expect in case I fall into the worse-case senario situation. I asked a lot about chemo treatments before I even got to that stage (some might call me a pessimist but it makes me feel better to be informed).

My levels did go on to rise (it went like this: 3270 to 3034 (this was considered a plateau because it was a less than 10% drop) to 3434 to 4400). Doctors usually suggest chemo if your levels plateau for 3 or 4 times or they increase over 3 or 4 blood tests. Click here for research detailing "Criteria for the Diagnosis of post hydatidiform mole trophoblastic neoplasia (GTN)".

My doctor explained that usually she doesn't get too worried if hcg levels plateau once because often it will fall again.

Sometimes if you go down to a very low number (under 100) but you don't go down to zero levels (less than 5 is considered zero) in 4 to 6 months from post d&c blood test, then they may treat you with chemo because the trophoblastic (aka. placental) cells are still persisting. The rule of thumb is that if they are falling (especially more than 10%) then things are looking really good.

Apparently most women take on average between 8 to 12 weeks for their levels to fall below 5 and some take longer. It seems to be very individual even though I was told to expect 10 fold drops each weekly blood test (the levels drop more slowly at the end like from 10 to 7 to 4 etc.) because hcg increases and decreases like on an exponential graph (think hockey stick shape).

In my case, when my levels started to rise, they did a chest X-ray to determine if the cells had metastasized (moved to other areas in the body besides the uterus). If the cells are in your lungs then that usually means that they are in/or on their way to your brain and this puts you in a higher risk category and you will likely get a stronger chemo treatment. Even if you are high-risk, it is very curable. I am on the low risk chemo "recipe". For me this is methotrexate and actinomyacin (aka D-Act or Dactinomyacin). I go in every two weeks and stay overnight because I need to have an IV. They inject the chemo (it's a liquid) through the IV and it doesn't hurt or anything. The metho is dripped in with saline, again through the IV. The saline is cold so it feels cold. It didn't hurt me to get the IV inserted in a vein. I'll have treatments until my numbers come down to less than 5 and then 2 additional treatments. I'm glad that I'm at a cancer centre because they seem to be really together and have treated this for years there. Everyone in the province who needs this treatment is treated by them.

I was so scared before the treatment but it turned out to be just fine. The nurses are great and once you get the IV in, it's smooth sailing. You do feel a bit weird - tired, groggy but I haven't felt nauseous (they have good anti-nausea drugs now). Everyone is different though and responds a bit differently. I was told that this chemo does not make you lose your hair but can thin it out. So far (this is my second treatment), I haven't noticed my hair thinning.

Every cancer centre seems to have a slightly different recipe depending on their experiences in the past with patients. From what I've read on the internet and on forums, I think that many women just get out-patient shots of methotrexate every day for like 5 days and then they have 5 days off. This continues until their numbers drop to zero and then there's a couple of treatments after that. At the Cancer Centre I'm at, they tried that recipe but they had too many cases where women became resistant to the methotrexate and it stopped being effective. Then they had to move on to stronger drugs and it prolonged their treatment and the drugs were much stronger. They said that they find the treatment that I'm on is the most effective treatment for curing people with GTN (gestational trophoblastic disease) in the shortest time possible.

So who knows, maybe I would have done fine with just the metho shots but at this point I thought why gamble? Plus, I don't think that there was a choice involved. So, I've been told, there are no long term harmful effects of this chemo. Your cells replace themselves. You do not get secondary tumours (this is a case where your chemo can cause other tumours to form - weird, I know). They have cured everyone that they have treated. It is considered a success story in women's cancer treatment. So while it is unpleasant and a drag, it totally takes care of the problem and there is little chance of it recurring and you can go on to have babies. I was very scared about this whole thing before I had the chemo and now that I know what to expect and my levels have gone down with treatment, I feel pretty okay about it all.

Chemotherapy is a drug that kills cells. It's not specific so it doesn't just kill the trophoblastic cells (placental cells), it kills other cells as well. I still don't entirely get it. Does it kill off a percentage of the cells? Someone on chemo last told me that he thought that the chemo goes to where the immune system (and white blood cells) is working hard to fight something off. I've also read and have been told that chemo kills the fast growing cells (hence possible side effects like mouth sores, hair loss, etc.) and placental cells grow fast.

Most women don't go on to have to have chemo. Especially if you've had a partial. I think the stat is 2 to 5% of partials need chemo. Stats aren't always helpful though. I found out that only 13 women in BC last year needed this treatment. That's not very many. Of course, it is a much bigger number if we included all the molar pregnancies.

Again, the most important thing to remember is that GTN is totally curable and it does not effect your fertility.

Back home finally!

I'm so glad to be free from dragging around that IV stand and all the cords to get tied up in. And I'm at home now and that feels awesome!

I met a guy who was having chemotherapy and he invited me to the Young Adult's Cancer Network (www.yacn.ca) support group meeting. I told him my story and how I'm not sure if I really 'fit in' although this is technically considered cancer. He said I could come and that it was a nice group of people. I'm glad that he invited me. We had a good talk. He said that he was treated for cancer when he was a kid and the treatment caused this secondary tumour that he now has as a young adult. He said that the chemo and treatment has come a long way since.

I don't know how much I want to identify with being a cancer survivor. I'm not sure where that's coming from but there, it's out in the open. The prognosis is so good with GTN (gestational trophoblastic disorder) that I'm trying not to think of this as cancer. I guess it's a protective mechanism. Maybe it would be good for me to go to a group. I don't know. I'll think about it.

I'm very glad to be home and I'm off to take a sleep because I didn't get to bed until 3:30am last night.

10:24pm Now I'm feeling pathetic

M left. He needed to get a good sleep. I'm a big girl. I should try to sleep but I don't really feel tired but I should try. This place is so creepy...I mean how could a cancer clinic at night not be creepy? This stuff is working though. My levels have come down. I've been told I'm going to get really irritated with coming to have these treatments. But hey, I am so grateful. I've met some people here and well, I'm grateful that I'm doing okay.

Someone asked the Dalai Lama, who is in town (see previous post), how he would define 'happiness' specifically. He said, and I quote, "I don't know" and he laughed. Is he keeping something for all of us who would really like to know? Then he went on to talk about how he feels happy after a really good breakfast. I can relate to that. We have this awesome breakfast place near us where you can sit out on the patio and you can even order wine with your "brunch" if you want. I think I like everything I've eaten there. They even serve fresh scones with real jam and butter before breakfast. The coffee is good. The tomatoes on the side are amazing. I love good breakfasts, especially eaten in the sun. M's favourite is eggs benny with the smoked salmon. He always orders that and I love it that he always orders the same thing. Okay I feel better just writing about eating brunch there. Another bonus is that it's right outside our door on the seawall and you can do a lot of people watching.

The chemo has finally kicked in and I feel pretty crappy. I totally forgot what this stuff feels like. I feel bloated (from all the fluids), not willing to concentrate, tired, cranky. I wonder if it's the chemo or the anti-nausea meds. Man it's cold in here. Oh, they were mistaken when they showed me where the hot blankets are kept. They don't know that that's my favourite comfort activity. I love rolling in laundry that's warm out of the dryer. Weird, I know but very comforting. I guess I'm off to get a blanket and pee for the millionth time. I'm not spell-checking this because I'm too damn tired. And I'm on chemo and I don't have to do anything I don't want to. Maybe I'll try to watch some bad TV. So far, we've watched like 7 Gilmore Girls from a DVD I rented. M is so great to watch it with me. We talk about it like a soap opera. It's light fluff and funny, perfect for the hospital. It's good to have an escape. I wish I could go home to sleep.

I guess I'm Miss. September

I found out that there were 13 cases in BC (at 3 cancer centres) during 2005 to treat low-risk Gestational Trophoblastic Disease. I guess I'm Miss September for 2006. Of course, as it was pointed out to me, there were many, many more cases of molar pregnancies in BC where the women's hcg levels decreased to zero on their own. Why do I like statistics? It seems to satisfy something in me somehow, I don't know why.

I looked in the mirror and boy, do I look like hell. M is a super husband and he says I look great...but a little green. I look yellowie/green. I've bonded with the lady in the next bed to me. She's really nice but has been having a hard time with her chemo/radiation treatment. It's made her very sick and uncomfortable. She said, "You know, it's life. You have your good days and you bad." True. She told me about her sister that had many miscarriages (1st and 2nd trimester) and she finally had cerclage (I think that's the right term) in Switzerland by the doctor that treated Sophia Loren! This woman's sister had to stay in bed for the whole nine months. Now that's bed rest. This was like 30 years ago I think she said. Her sister had 2 children. I love hearing about these sad/happy ending stories now.

Oh! I'm almost forgot to write. My levels have dropped! 270. Thats 4400 (or more because I was tested on Friday and didn't start treatment to the following Monday) down to 270. Great news! I'm so grateful that this is working.

Lessons learned so far:
- getting pregnant and having a baby is a journey
- I'm good at sticking up for myself
- chemo (this chemo) is as bad or scary as I thought
- I need to stop thinking that I'm so bad off
- Occasionally it's okay to feel sorry for myself (probably more often than I let myself)

I'm sure there's more. I'm open to learning as much as I can from this. I can see now why doctors don't get too concerned about this condition. It is curable, plain and simple. But man, did it scare the hell out of me and it's never very good to be cocky, is it? Everyone's body reacts so differently.

Blogging on the sly...

I can actually blog from the Cancer Agency - cool! It's become a new obsession. I'm in the process of being hydrated. Had my blood taken this morning to test for hcg. They say that the results with be in this afternoon. My lovely doctor came to see me, Dr.P. She is so great! She is going to find out for me how many people in BC have been treated for this each year. I know it may be weird to want to know these kind of statistics but I'm interested and she said she would try to find out for me. She also told me that all of the patients that she's treated (and it's been a lot) have been cured and only 2 cases that she knows of had a reoccurence, where their hcg levels went up again, after 6 months at zero. Hence, the wait time of 12 months. This first blood draw might not show a huge drop in hcg levels. Apparently sometimes this happens but very rarely. She also assured me that the red bleeding I was having was nothing to worry about. When the trophoblastic cells die then they are shed from the uterus and there will be some bleeding. So, sounds like it's a healthy sign.

We thought we were going to be late this morning. M said, "Well, it's not a job interview." I'm not used to getting up so bloody early. I like to go to bed late and get up late. When I came out of our apartment we bumped into a neighbor. This is the same guy who M had pulled the chemo card with when M told him to turn down his loud music. You know, the chemo card, like when you use the word 'chemo' to get your way. It's bad but oh, so good. So this guy looks at me and doesn't say hello but I see all the thoughts going through his head..."Who's that....oh, that must be his wife....right, the one that's taking chemo....that's sucks....hey,she doesn't look too bad....he wouldn't have lied about the chemo would he?..." This literally flashed across his face in like 5 seconds. Weird.

Love this blogging.

What does "mole" make me think of?

I think of the small animal from "Wind and the Willows" (I hate that book).

Here are other definitions from Wikipedia:
Mole may mean:
Mole (animal)
Mole (espionage), a spy working under deep cover
Mole (sauce), a Mexican sauce made from chile peppers and other spices, including chocolate
Mole (skin marking), a small spot of darkened pigment on the skin
Mole (unit), also mol, is the SI unit used in chemistry for the amount of a particular substance
Mole (architecture), a massive structure, usually of stone, used as a pier, jetty, breakwater, or junction between places separated by water
Mole (character), the protagonist of a popular Czech animated series made by Zdenek Miler
UK term for vise-grip, a type of plumber wrench
Gun moll, a female apprentice to an American gangster
A derogatory term for a girl or woman, especially in Australia (a variant of moll)
Mole may also refer to:
The Mole, a reality television series.
The Mole (South Park), a psychotic French character from the animated series South Park
The Mole (emcee/producer), underground hip hop personality
Mole cricket, a cricket in family Gryllotalpidae which spends most of its life underground
Mole salamander, a burrowing salamander in family Ambystomatidae
Molar pregnancy, a medical condition
Tunnel boring machine, a device for constructing a tunnel
Mole-rat, a type of rodent that lives underground
Adrian Mole, the fictional protagonist in a series of books written by Sue Townsend.
Beriev Be-8, Type 33 Mole aircraft.

What to name this blog?

Molar Expedition
Too Cool for Molar
"I think we have a Mole."
Undercover Mole
Complete Molar Mess

I hate the word 'molar' and 'mole'.

Packing for the Hospital.

Taking:
- courage
- DVD and DVDs - Gilmore girls, Sister Wendy Beckett, Pretty in Pink, any other movies that look light and funny
- new PJs (didn't own any PJs before this)
- Vanity Fair and Wired magazines
- book: "Labyrinth" by Kate Mosse
- husband, M
- MP3 player

Leaving Behind:
- pride
- comfortable bed
- freedom from toting IV stand everywhere
- uninterrupted sleep
- normal peeing rate (I'm up to pee every half hour because of the hydration - it's as bad as pregnancy)

This is my second treatment so at least I have some idea of what to expect this time. Let's see: I go to the Cancer Agency, go up to the 5th floor, check in with the nurses, get a room (hopefully a private one but I doubt I'll get it), nurse will come to draw blood and then start an IV, start hydration with solution to make my pee alkaline, wait for chemo drugs to arrive, watch a movie or maybe write, hopefully talk to my doctor (Dr.P), take anti-nausea pills, feel weird/foggy because of the pills, receive a shotful of dactinomyacin (aka. Act-D or actinomyacin) through IV, then slow drip of methotrexate (yellow) with saline (feels cold because the saline is cold) for an hour or so, more movies, reading, play scrabble, etc. for the rest of the night, more Act-D in the morning (needle full) and wait for a few hours, hopefully hear about what my levels are, take 3 pills of calcium leukovarin (rescues cells from dying from methotrexate), then IV is removed, armhair ripped off by nurse when taking off tape that holds IV line, change and then I'm a FREE woman again.

Did I forget anything? Oh yeah, things like living next to someone else who has cancer, feeling heartbroken to hear them cry and have their bedpan changed, beeping during the night from the stupid IV machine, hanging out and laughing with my fabulous husband, visiting with family that come to visit, bad (I'm not exaggerating) hospital food and.....that's about it I think.

I can handle all that. As long as there's no surprises.

Bleeding obsessions: staining, spotting and the like.

God, everytime I bleed now I start to panic. I don't know why because I feel like I've been staining, spotting, or bleeding off and on for the past 3 months. I've never relaxed about it. Everytime it seems like it's been cause for concern.

I remember when I was first asked the midwife, "what is the difference between spotting and staining?" I can't even remember the answer. I don't think I knew that there were different ways to describe bleeding. And then there was the whole: "Am I soaking a pad every one or two hours?" I didn't really know. I asked the nurse after my d&c in the recovery room, "So, is that soaking?" as she's watching me change my pad. "Yes, that's soaking." So we're talking big pad and thoroughly drenched. Okay. So here are the few things that I've learned about bleeding during pregnancy, during a miscarriage, during a molar pregnancy, after a d&c and while on chemo for Gestational Trophoblastic Neoplasia (GTN) Of course this is anecdotal and for interests sake. Call your doctor with any concerns:

Bleeding during pregnancy (8,320,000 hits on Google):
- makes you run to the computer to do a Google search
- can happen and you can still have a healthy pregnancy
- you call your care provider but you may or may not feel reassured
- often happens after sex (intercourse)
- brown blood is old blood and does not seem to cause as much concern, red blood is a more worrisome signal
- gush of red blood with cramping could signal miscarriage (it did with me)
- soaking a pad every hour (blood is pouring) is a signal to go to the hospital where they usually do an u/s and will suggest a d&c if it shows that baby has stopped growing or miscarriage is underway (although many women find that they can miscarry naturally).
- If you don't know if you are soaking a pad and are worried, you could go in to emergency and tell them that you are pregnant (or miscarrying) and you are soaking a pad every hour
- some midwives seem reluctant to say you are/will be miscarrying and you figure it out when you actually birth everything
- brown/prune coloured bleeding during pregnancy, combined with high hcg levels and any of nausea, vomiting, extended uterus/abdomen can signal molar pregnancy (ultrasound and hcg levels will usually confirm)

Bleeding during miscarriage:
- the whole miscarriage process can take a few days where tissue/placenta/fetus are passed at different points and bleeding can continue for a week
- Go to the hospital at any sign of fever or excessive bleeding
- Often your health care provider will want you to have an ultrasound to determine if you have passed everything on your own and do not require a d&c
- Many women can miscarry naturally on their own and even though it's a hard decision to make, I think that it's best to avoid the d&c if possible
- I got my period 4 weeks after my miscarriage but I've heard that it can take longer (4 to 9 weeks)
- Some people find that accupunture helps after a miscarriage

Bleeding after D&C
- In the first week, I bled red blood, then spotted, then bled red blood. I was told that bleeding red blood (like a period flow) is normal but soaking a pad every hour was cause to call the doctor immediately or go to the hospital
- I started bleeding after moving tables and things around in my classroom and I started realizing that I needed to listen to my body and if things caused bleeding then I would take it easy and not do those things (my doctor said the bleeding wasn't related to moving heavy things but I disagree)
- 2 weeks post d&c, I passed some clots with cramping and bleeding (some women on the forum said that this happened to them and they were told that it signaled that you would have a big drop in hcg hormone levels because the mole tissue was dying. Other women said that bleeding was evidence that the mole tissue was continuing to grow and proliferate. The verdict's out on that one. For me, my levels went up after that. My doctor sent me to an ultrasound to see if there was tissue remaining. The u/s showed that their was increased blood flow to an area of my uterus but there did not appear to be any tissue remaining. Seems like the trophoblast cells were continuing to grow and be fed with blood)
- many women bleed off and on following their d&c's and it seems to be really individual. It can last for awhile (even up to 8 or 9 weeks)
- they say to expect a period in 4 to 6 weeks but this is very individual as well and many women seem to have different wait times. They are in touch with their doctors about this.

Bleeding during Chemo treatment for GTN (Gestational Trophoblastic Neoplasia):
- my doctor did tell me to expect bleeding during my first treatment of chemo. I did bleed both brown and red blood during the first two weeks after the first chemo session. This supposedly indicates that the trophoblastic cells are dying and sloughing off. It is also been associated with a drop in hcg levels (this happened for me)
- some women from the forums said that they got their period while on chemo (they knew it was their period because it came regularly every 28 days) and birth control pills

I got my period 9 days after reaching hcg levels of "zero". This is while still on chemo. I heard to expect your period anytime after your levels are at 100 or less but that every woman's body is different.

How long to wait before trying? 3 months? 6 months? 12 months? Oh, the big debate. It's been interesting to read the forum at mymolarpregnancy.com and watch the opinions fly. The differences seem to depend on whether you have a partial or complete molar pregnancy, whether your numbers come down on their own or you need chemo, and most importantly (well, that depends on who you talk to) what your doctor thinks.

The wait time is coupled with blood tests to test the beta-hcg. The only way that doctors can tell if the trophoblastic (placental) cells are persisting (continuing to grow) is by monitoring the beta-hcg. If the cells persist and beta-hcg levels increase then you need chemotherapy (a mild chemo) to kill the cells. If you get pregnant, there is no clear way to see if a disease (persisting trophoblastic cells) has developed because the new placenta from the pregnancy will produce beta-hcg. It would take a few weeks to be able to ultrasound and determine that in fact there is an inter-uterine pregnancy. There is still a risk that the other abnormal placental cells have metastisized (spread to other parts of the body) and no one would be able to track this or treat it until after you deliver. You could get quite sick during your pregnancy.

Usually, for molar pregnancies that quickly resolve on their own to zero, there is almost no chance of recurrence. That is, beta-hcg levels will not likely increase after you reach zero.

This is what I've heard on the forum buzz and from reading research:

Partial Molars(this will depend on your individual case and your doctor's opinion):
- if you have lower levels pre-d&c (like under 200,000) and d&c is done in first trimester and levels go down to zero in a short period of time (5-6 weeks), then there are some doctors (not the conservative ones) that will say 3 months wait from when levels are zero.
- it is more common to have a 6 month wait from when levels fall on their own to zero
- if you need chemo to bring your levels to zero then usually the wait time is 12 months

Complete Molars
- if levels resolve on their own quickly to zero, then some doctors will give a 6 month wait (from when levels reach zero)
- the more conservative wait time is 12 months
- if you need chemo, then most doctors will give a 12 month wait time from when levels are zero (or from the last chemo treatment) but some doctors say 6 months. See this research for evidence supporting a wait time of at least 6 months.

I went hunting for some research and came up with this article on the web. I think I read this fairly soon after my d&c and I shouldn't have. It was way too much information and some sad stories. I would have been better off waiting longer (maybe 3 months or 6 months or 12 months) to read it. So the big wig specialists seem to agree on 12 months for someone like me who has to be treated with chemo to bring my levels down. As hard as that was to accept, I think it's probably the best idea. One of my oncologists, Dr.H, said 6 months and my other oncologist, Dr.P (associate to previous doctor) said "it's not 6 months like Dr. H said, you'll need to wait 12 months." They had a case where the GTN came back after 11 months. I imagine that for most it won't come back after 6 months but there's the risk. I'm going to ask her why she thinks 12 months instead of 6 (view other post for answer). There was some talk in that article about how the chemo may damage the mature eggs and it would be better to give some time and let them flush out of the system (my words, not theirs).

The 12 month wait feels to me like a slap in the face after being punched in the stomach. Insult to injury. Rubbing my face in the pain. Kicked when you're down. But a part of me knows that the wait will probably be good for my mental health. It's time for me! I can stop the obsessing about babymaking. I never thought that I would go there. Of course, I guess I always believed that I would have a healthy first pregnancy and child (even though I knew the stats about miscarriage). I don't think anyone really, truly believes that miscarriage is going to happen to them.

But the good news is:
- there is treatment
- I will not die from this
- my fertility remains intact

That's great news, in fact.

Should sad sack go and see the Dalai lama? The Dalai lama is in town to do a talk on Happiness (with a capital H). Ah...happiness. That elusive feeling. What does it describe? Does it describe contentedness or full out, endorphin inducing JOY? If you asked most people if they were happy, would they say yes? I guess I have very high expectations of happiness. I expect it to be the mind-blowing JOY experience. Laughing until tears come out of your eyes and your belly hurts or playing in the first snow or something. Maybe I need to lower my expectations of Happiness. Then maybe I'd say yes if someone asked me if I was happy instead of...uh, I guess so.

List of things to be happy about today:
1. It's raining so I don't have to feel like I should get out there and take advantage of the good weather.
2. It's the weekend so I get to drink coffee (I'm trying to be healthy and drink green tea during the week).
3. I just was introduced to the Gilmore Girls and it's a lot of fun. It makes me laugh.
4. There still a lot of old, bad 80s movies that I can watch while at the hospital this Monday.
5. I feel pretty healthy considering I have lots of cytotoxic drugs in my bloodstream.
6. I get to hang out with my loving, awesome husband, M, today.
7. I'm not stressed out about work.
8. I can read one of my favourite blogs: babyfruit
9. I get to blog.
10. I could have 3 free therapists if I wanted.

List of losses to date:
1. Potential baby #1 (miscarriage #1)
2. Potential baby #2 (Molar)
3. d&c
4. levels going up...need chemo
5. no work for 4 months (could there be a 'gain' in there somewhere?)
6. pregnancy innocence
7. intermittent faith and hope (although it's still there)
8. some friends (after careful evaluation on my part)
9. some weight
10. Oh yeah, a year before we can try and get pregnant again (more on this in another post)

I like lists. Lists make me happy.

Molar what? Molar who? Molar why?? I think I asked these and a million other questions to my very British, somewhat arrogant ("I have slaves to do that") gynecologist oncologist. Who would have ever thought that my egg could have no genetic material in it? Empty egg. Or maybe somehow the material got kicked out of it. I don't think they really have any hard evidence how it happens (or maybe I'm wrong...let me know). They do know that a complete molar pregnancy has all paternal genetic material and no maternal. And it's rare...only 1 in 1000, or 1 in 1500 or 1 in 2000 pregnancies in North America depending on who you talk to. That's not that rare though, is it?

I should start at the beginning. I was pregnant again in May 2006 after my first pregnancy ended in a natural miscarriage at 14 weeks in March. This second pregnancy felt not right from the beginning. I peed on a stick 2 days before expected period and it read negative. Then I missed period and I tested again...nothing. Tested again the next day...nothing. Spending lots of money on pregnancy tests. A week after expected period I tested again and got a very faint line. My husband and I were happy but very guarded.

I went to my family doctor early on at about 5 weeks gestation. I decided to go to my family doctor instead of my midwife until the pregnancy was deemed "viable". Then I would switch back to my midwife. This indicates my whole wacked-up thinking from the beginning. I was still greiving from my previous loss. Not aware of it at that point though.

My doctor scheduled an early ultrasound for 7 weeks. I remember that ultrasound because I drank way too much water and they were late getting me in. Since then, I have never drank the full amount of water. He could only see the gestational sac and no fetal pole. He said that it may be too early but I knew it wasn't a good sign. I thought that it was a blighted ovum. Still, he said to come back in a week or two. We went away on holidays and I was a miserable person the whole time. I kept trying to make all these requests to the Big Mama (you know, God). "Please help this to be a healthy baby".

When we returned, I went back to the doctor and she set up another ultrasound and a hcg quantitative blood test. The ultrasound was at a different and better ultrasound office, with more sophisticated machines. I felt almost sick to my stomach before going in. I had a really nice technician who asked for more information about my situation. The doctor had scribbled something about viability. I told her about my previous miscarriage and how there had been bleeding with this one.

While doing the exam she was able to tell me that there was no evidence of a fetal pole or heartbeat. I was glad that she was honest with me. I didn't want to have to wait until I saw my doctor to hear about that. After the u/s, my husband was invited down and we both saw the Radiologist doctor who explained that there looked to be a "mass" in my uterus. That freaked me out. She did not use the term "molar pregnancy" and I don't understand why not because it was in her report that she sent to the doctor.

My husband and I went in to see my family doctor on Monday. I was supremely annoyed when a resident came in and asked if I would see her instead of Dr.Z. I declined. Dr. Z came in to deliver the news that it was a suspected molar pregnancy. I had had the whole weekend to read so that was one of the things on my question list, however I did not think so because I had no other extreme symptoms. Dr. Z was pretty sympathetic. She said that she had only seen two cases of this. One case was her good friend who she said now has two healthy children.

Dr.Z referred me to a gynecologist (Dr.G) who would handle my case. I would not be able to have a natural miscarriage (which I wanted) because it was harmful to continue to let the hcg levels rise and the placental cells would grow even more. I had to have a d&c. This really scared me. I didn't want anyone fussing with my reproductive organs. But I had no choice really.

We went over right away to Dr.G's office. Dr.G was very straightforward and honest. No condolences on the whole matter. She was strictly business and facts. I did like her though. Her partner in her practice was going to do the d&c and then Dr.G would follow my hcg levels. I would have to have weekly blood tests. B, her office assistant, would call me with the blood test results. Unfortunately, B was short for B-i-t-c-h.

I remember when my husband and I went to the hospital to be admitted for the d&c . We were asked to wait in an area where all these people were waiting to see their family member's new baby. They were so happy! My god, talk about torture. I think there may have been another young women who was having a d&c and the rest were waiting to see a baby. The pain was intense. I felt like I was going to dissolve into a puddle.

Then we went in and I was "prepped" for surgery. Most of the nurses were great but one just treated me like a number to be processed. I'm glad they knocked me out right away as soon as I lay down on the operating table. Those surgery rooms freak me out. They're so big and then there is all of this foriegn equipment.

I woke up crying in unison with a newborn in the next cubicle in the recovery room. Why had they put a women who had just had a c-section next to me? I was so glad that my husband came in soon afterwards. I was shivering and he got me a warm blanket when the nurses didn't. He was so sweet and nice. He had such a hard time seeing me cry in such a sad circumstance. It was very comforting to have him there.

It took me about 2 weeks after my d&c (which was on July 27, 2006) to find out about the pathology report. The pathology report summarizes what they found after analyzing the "products of conception". I kind of had a feeling that it was a complete molar pregnancy because my hormones levels were extremely high (above 200,000 at 10 weeks gestation) and in my two previous ultrasounds they had not found a fetal pole. I had no other symptoms that indicated it was a molar pregnancy except bleeding.

I had to go out of my way to get the information from my pathology report. I called to make an appointment with the gyny, Dr. G, and the receptionist, B, told me that she would see me in 6 weeks. No, no, no, I wanted to see her sooner please. It took a lot of questions to figure out why Dr.G couldn't see me sooner and the answer? "She won't get paid if she sees you before 6 weeks." Huh? B told me if I wanted the results to my pathology report then I could go and see my family doctor who would get a copy. So after my next blood test, I went and made an appointment with my family doctor.

So far, my beta hcg levels were coming down nicely (200,000+ pre-d&c to 29,545 one week post-d&c to 3279 two weeks post). I would get totally freaked out after having the tests done but B was very hostile if I called her before she called me. I wish the stupid testing place would send me a copy of the results as well. Send one to my gyny and one to my family doctor but not one to the patient. How's that empowering the patient?

When I found out I had a complete molar pregnancy I felt that I was getting the worst of the worst. The tears started and Dr.Z did her best to console me. I knew the stats. There's I think a 15-20% (vs. 2% risk for partial molar) chance that a complete molar pregnancy will have further complications of Gestational Trophoblastic Neoplasia (GTN), aka invasive mole. Basically, the cells that make the placenta bury deep into the uterine muscle wall and if your immune system cannot kill off these cells then they "persist" and can spread to other parts of your body. All I could do was wait until the next blood test and search the internet freaking myself out. And woah did I freak myself out. But I also learned that a lot of women have gone through this and I met a few of them online at mymolarpregnancy.com. This is one of the few sites devoted to molar pregnancies. I was really glad to find it because the other miscarriage sites did not have a section specifically for molar pregnancies.

It felt like my anxiety went up because I could not get an appointment with Dr. G. I wanted reassurance. Some doctors underestimate how much their reassurance can go a long way to helping ease their patient's mind. I see now how much power I was giving away to her. But she had seen other patients through this process. She had more knowledge than me. It was so frustrating not to get an appointment when I wanted one.

The next blood draw showed levels had "plateaued" at 3034 (less than a 10% drop is considered a plateau) and the next showed that they had climbed back up to 3434. Told all of this by my friendly receptionist, B. Then, she also got to give me the good news to go and see the oncologist at the CANCER AGENCY (I was pretty scared to hear this). She rattled off a list of things...she needed a chest x-ray, go here, do this.

"And when was that meeting with the oncologist?" I ask politely.

(do your best impersonation of the office manager slug on Monsters Inc.) "As I already told you, I need to wait until Dr.G is back so that she can make the referral."

Fuck you lady. You just gave me bad news and I hardly heard anything you said after the 3434. It felt good to be mad so that I didn't have to feel so scared. This whole experience was made so much more unpleasant because I didn't feel like any of these people really gave a shit about me. In fact, I didn't feel like B was on my side at all. I think she was relieved when I was referred to the cancer agency. I know I was glad to be rid of her.

I was so scared. As I sat in traffic on my way over to have a chest x-ray, my heart was very heavy. The fear made me feel like I couldn't breathe. I felt guilty too. I felt that all of my worrying and anxiety and pessimism had caused this to happen. I knew that was not true but there it was, that's what I felt. I felt like the universe was taking a crap on my head. Why me?

Chemo. I was going to have to have chemo. I was going to have to go to a cancer clinic. I was going to have to wait for a year before being able to try again to have a baby.

While thinking about the various ways I could spend my time during the day, I happened upon the idea of keeping a blog. A bold step for me considering that I get super paranoid about people reading my journal. Why blogging? I now have 4 months off work and trying to find something to join or people to hang out with during the day in this city is like trying to find a blog devoted to molar pregnancies. I'm sure it must exist and I will find it but it's going to take time and a whole lot of searching. Most people work during the day. Or so I thought. But there's a ton of people at the market during the day and they can't all be tourists, can they? I thought I'd document my attempts to create daytime community in a beautiful but reserved (ice cold actually) city. Oh yeah, and along the way I'll probably talk a lot about pregnancy loss and molar pregnancies/GTN/chemo treatment because that's why I'm off work for 4 months.