Tuesday, November 4, 2008

When It Rains

First, I apologize for the length of this post. There is a lot of information here, and I'm afraid there are not a lot of ways to get it all across without the length.

I feel like I’ve slipped into the twighlight zone. I don’t know what I’m doing or where I’m going. Processing simple thoughts and performing simple actions suddenly seems complicated and difficult. I’ve lost the ability to perform mental checks on myself to make sure I’m not flying off the handle for no reason, or saying something I shouldn’t. I don’t know what I’m thinking. Most of all I don’t know what I’m feeling, or even what I’m supposed to be feeling. Suddenly all these unreal things are happening. Someone I’ve known since grade school had her father pass away this past weekend. Both of her parents have passed in the last five years or so. She’s the same age as me. That is unreal to me. A friend of mine, who I never thought would be a parent, has told me of a pregnancy. Another person, someone who has never, ever taken an interest in my life at all, (at least, not a genuine interest), is suddenly offering me condolences on my loss. A co-worker thought her 24-year-old sister had a heart attack last week. My mom is once again enduring chemo. My grandma is basically sitting at home waiting for her cancer to take her, all the while wishing she could fight. (Not to mention Obama winning the election.) All of this is enough for me. Given this alone, I would think I had slipped into some alternate universe, some freaky, out of whack third dimension. But then add what additional developments have happened with my personal situation, and life has truly turned upside down.

My D&C (sorry, I have been corrected as to the true name of the procedure, it is not a “DNC”), went fine, and while I was very tired, I felt no pain by the afternoon of the following day. In fact, by that afternoon I was feeling really good about the whole situation. It was as if I had a little closure on the ordeal, now that the procedure was over and didn’t turn out to be quite as bad as I had expected. The day after that, October 24th, a Friday afternoon, I received a message from my doctor on my home answering machine. But that afternoon I was already on my way to Wyoming for my bil’s surprise 30th birthday party, so I didn’t actually hear the message until the following Sunday night. The doctor said she had received the pathology results from the D&C. She said she wanted to discuss them with me. This is not something I was expecting, since I had been told that I would just need to come back to see her in six weeks for a follow-up to make sure everything was ok. The message said that if she had not heard back from me by Monday afternoon, she would call again. This worried me, though, since it was the doctor herself who had contacted me, and not some assistant that just wanted to set an appointment for me. But, since there was not much I could do about that on a Sunday night, I thought I’d just call her sometime Monday morning, after I had returned from my Court hearings.

8:30 Monday morning, as I was in the process of hustling Sweetpea out the door to school so neither she nor I would be late, the phone rang. It was the doctor. She checked that I had gotten her message, and then said she needed to discuss the pathology report with me. She wanted me to come in to meet with her. When I asked if there was anything to worry about, she told me no, but that there was just something a little unusual with my pregnancy that she wanted to explain in person. Needless to say, this really offered me no comfort. Especially since the last time she said there was nothing to worry about, there actually was something to worry about. I managed to concentrate enough to get myself through the day, then hurried to the appointment. Unfortunately, due to an accident occurring right in front of me, I was about half an hour late. Thankfully, the doctor felt the matter was important enough to stick around and wait to see me, and had not left the office yet. When I asked what was going on, she had some difficulty explaining the situation to me. After having talked to her about it, and trying to read about it on the internet, I understand why. I will try my best to relay the scientific mumbo jumbo to you.

Originally they told me I had a misabortion, which I have since found out basically means a miscarriage that has not been expelled from the body. There is an embryo that forms, but almost immediately dies and then is reabsorbed into the body, leaving only the placenta and possibly the yolk sac. Then these things remain until a miscarriage or D&C occurs. Instead of this, the pathology report came back indicating that I had a rare occurrence called a partial molar pregnancy, which is something different than what they had told me I had experienced. Molar pregnancies occur in 1 in every 1,000 pregnancies. Partial molar pregnancies occur less that that. This is how the doctor explained it to me: a normal, fertilized egg has 46 chromosomes – 23 from the egg and 23 from the sperm. When the egg ends up with 45, 47 or 48, the majority of the time the pregnancy will end with either a miscarriage or a misabortion – though sometimes an embryo with 47 chromosomes will survive. This is where Down’s Syndrome comes from.

In my case, the egg had 69 chromosomes. What this means is that there were two sperm and one egg, and all three contributed all of their chromosomes. Or, there ended up being two copies of the chromosomes from the sperm. The result was a fertilized egg with 1/3 more chromosomes than it should have. Some of my readings about this have indicated that this is actually a form of twins, though my understanding is that the egg does not split as it should. Other readings have said nothing about it being a form of twins, so I’m not 100% sure as to what is right. In the articles that indicate twins, what appears to happen is that there is one viable embryo, and one embryo with three sets of chromosomes. That embryo immediately dies and forms this abnormal tissue resembling a cluster of grapes (called a mole). The tissue continues to grow and quickly destroys the viable embryo. In the articles that didn’t mention twins, this is the best I can translate: the same cluster of grapes forms, but somewhere inside it is some normal placental tissue that does begin to develop into an embryo, but not one that could ever survive due to the abnormal tissue and abnormal number of chromosomes. In a molar pregnancy, no embryo ever forms at all. I found these two articles the most helpful in learning about this: Parent Center: Molar Pregnancy

Wikipedia: Twins

Now here comes the really wacked out part. Ready? This abnormal tissue actually acts like cancer. While Wikipedia refers to it as cancerous tissue, most of the other articles I read stop short of calling it cancer. However, it is abnormal tissue formed from normal cells that continues to grow. If all the cells are not removed with a D&C or miscarriage, the remaining cells can actually begin to re-grow. If not treated, they can spread to other organs of the body and can be fatal. Sounds a hell of a lot like cancer to me. The articles refer to the re-growth as Persistent Gestational Trophoblastic Disease, which is 100% curable if caught while the cells are still only present in the uterus, and 80 – 90% curable if the cells have spread to other organs. Now get this. Persistent Disease is treated with chemotherapy. That’s right, you read it correctly. Chemo. One minute I’m pregnant, the next minute there’s a possibility that my failed pregnancy could lead to cancer. Or, at least, cancer treatment. On top of that bit of news was the additional blow that because of the way they test for the disease, an attempt at another pregnancy would not be possible for at least six months. The possible re-growth is monitored by blood tests insuring that the pregnancy hormone has reduced to zero, then remained at zero for six consecutive months. If another pregnancy were to occur during that time, there would be no way to determine whether the presence of, or increase in, the pregnancy hormone is due to the disease or the new pregnancy.

My first reaction was not to the news of a possible disease, (though this did hit me later). It was to the news that not only had I lost something, but that something had now been taken from me for at least six more months on top of the additional nine months necessary for a healthy baby. In addition, on the chance that my husband and I decide we don’t want to have children a minimum of six years apart in age and choose not to try for a baby again, it has been taken away from me permanently. I know the doctor tried to break this to me gently. I did not take it well. I dissolved into tears right in the middle of the poor woman’s examination room. And I don’t mean just silent, upset tears that do nothing more than run down your face and maybe make your clothing a little damp. I mean the out and out sobbing in your hands so loudly the woman in the examination room three doors down can hear it, while all of the belongings that were previously neatly perched upon your lap fall to the floor and you don’t even care about the embarrassment that it may cause you later to have to pick them up. I really don’t remember a whole lot of the rest of the conversation. In fact, I don’t really remember much of the rest of the evening. All I know is that I was upset, and couldn’t understand why all of these bad things keep happening in my life in such close proximity to each other.

I did go home that evening and try to educate myself on this anomaly. I’ve found that because this is so rare, there is not a lot of expanded information on it. Most of what I found said the same thing over and over again, with maybe the exception of change in numbers here or there (i.e. 5% chance vs. 20% chance, or 6 months vs. a year). I spent most of Tuesday miserable, until I realized at bedtime that I was literally making myself sick. I woke up Wednesday with a full-blown cold, the stress of everything that had happened finally catching up with me. To be honest, I’m a little surprised it has taken me this long to get sick. After all, I have been on total stress overload since July. But, when I woke up sure I was sick, it was a bit like a mental slap in the face. I told myself that I had to pull it together. If I didn’t, I wouldn’t get well, and I was doing myself no good being sick. I’ve managed to feel better for the last week. While that worked for now, I believe it is only temporary. Especially after the phone call I got just this past Sunday evening.

My doctor had called and left me a message on Thursday to let me know that, as suspected, the blood test had come back with the pregnancy hormone still present. This was no surprise, as she had told me that would probably happen. It is too soon after my pregnancy to have it returned to zero. She wanted me to return to have my blood drawn again sometime between Monday and Wednesday this week. Sunday evening she called to make sure I got her message. I told her I had, and asked what the count actually was on the hormone. She said it came back at 938. When I asked if that was normal, she told me she had discussed my case with the head of the research department at the hospital. Apparently this man is also heading up a study dealing with miscarriages and the affects of low-dose aspirin on attempting to get pregnant again after a miscarriage (something I was looking into participating in). Because this man has so much experience, he is apparently the resident expert on miscarriage and related events. She said she had gone to him to make sure that he agreed that my hormone count was normal for the amount of time that had passed after the pregnancy. He agreed that it was. She then questioned him as to whether I would still qualify for the study since I had experienced the partial molar pregnancy as opposed to simply a miscarriage/misabortion. He then told her he didn’t think I had a partial molar pregnancy. This was not based on his review of my records. Instead it was based upon the fact that she was the second doctor to approach him with questions concerning a patient diagnosed by the same pathologist as having a partial molar pregnancy in a two week period. Since the disease is so rare, and it is practically unheard of to have two cases in such proximity to each other, he doubts the pathologist’s diagnosis. He is concerned that the pathologist may be seeing something slightly unusual in the tests performed, and rather then taking the extra steps to perform additional genetic tests to verify the results, is defaulting automatically to a partial molar pregnancy diagnosis. He suggested that she contact the pathologist to determine if they actually performed the additional tests, and if not, order the tests to verify the diagnosis. She intends to do that when she returns to work Thursday this week, but results won’t be available until sometime next week at the earliest.

Frankly, I don’t know what to do with this information. I cannot absorb it. I cannot process it. I cannot fathom it in any way at this point. So I simply am not. Until the doctor provides me with some additional information, I am continuing on as if Sunday’s phone call never occurred. I simply do not have the capacity at this point to deal with any more, good or bad. Until then, everything is as it is, and is no more.


shokupanmanbo said...

J! I am so sorry for the whirlwind that appears to be swirling through your life right now!! If that lab didn't perform the additional tests they should have then shame on them. They should know what a mental and emotional blow that diagnosis would cause. If the REAL results come back normal then their callous treatment is inexcusable. In any case J, I know you and I know you'll make it.

God bless you and your family!

Anonymous said...

hey J dont forget, I'm here for ya at all times! Luv ya girl! :) <3