In case you were wondering what I meant by my "dysfunctional family" this is an excerpt from my younger sister's blog and how I just learned that my eldest sister is apparently going to start undergoing what was deemed completely unnecessary chemotherapy for her stage 1, completely removed fallopian tube cancer. I can only guess that my family is continuing to keep me in the dark as to what is happening with my sister because of what has been/is going on with us, as that was the justification presented to me when she was dx and we were dealing with the loss of DH's dad back in September. Unfortunately, this means that the lion's share of the common sense among of the bunch of us has been excluded from decision making...
"I did not have an opportunity to vote on the decision of whether or not to subject my developmentally-disabled sister to chemotherapy, but I am strongly opposed to the decision that has been made. The cancer was found in the wake of elective surgery, the point of which was to increase her comfort and quality of life. This was a good thing, both the surgery and the priority that justified it. However, I cannot see how putting such a physiologically, emotionally, and intellectually fragile creature, who is also pathologically cancer-free at this time, through aggressive and sick-making chemotherapy treatment is something that could be seen as consistent with the priority of increasing her comfort and quality of life. In fact, it is absolutely diametrically opposed to that priority. If the point of the chemotherapy is to prevent a future recurrence of cancer, there are many better and less invasive methods of prevention that could be adopted, which would be in keeping with that priority. However, this is not the direction or the path that has been chosen and I cannot understand or agree with it.
While this madness of poisoning my sister is going on next door in Wisconsin, I have to carry on with my daily life in Minnesota - trying not to be haunted by visions of her succumbing to the vile side effects of the treatments she will undergo in the next several weeks and months.
Through all the mental gymnastics and ruminations I have on the topic, I just keep asking myself: What happened to the priority? And I have to be satisfied with this very unsatisfactory reply: It has been overshadowed by lesser but more abundant concerns."
Wednesday, January 19, 2011
Tuesday, January 18, 2011
What a ride (vent)
I feel like I've developed bipolar disorder in the last three weeks. I'm up, I'm down, I'm flat, I'm all over the place. I wish I fit nicely into the five stages, then at least I could figure out where I'm supposed to be...
I try to focus on the fact that we are so lucky to have (i.e. planned for) the option to hopefully try again soon, and attempt to escape this nightmare, though it's a real and significant financial hit. Then I think about how I can't believe that for as long as we've been trying we are no closer than we've been before, and our past performance is no guarantee of future success. I'm not one to wallow in self pity, but instead try to figure out how to fix the situation, but the reality is I wish there was a way off this ride, I'm getting so sick of it. It effing blows!!!
I think I did really well with the disappointment before, cycle after cycle after cycle, surgery after surgery after surgery, but it just feels different now. We struck out (big time) in the big leagues, and I'm getting old, and our insurance is gone, and I'm tired. I'm ashamed to say it, but part of me wishes we hadn't gotten pg at all. That would have been "normal", given the roughly 60/40 chance of success. But no, instead we fell into that four percent that are teased with the idea of a baby and that maybe we can masquerade as normal people after all this time, just to have it ripped away.
In my support group last week, a girl talked about how her therapist had helped her work through her control issues and how they stemmed from her neglect as a child. Talk about hitting home. I think we all have control issues to some extent, it's human nature, but for those of us who've dealt with particularly shitty childhoods that we've spent years working hard to distance ourselves from and manage against it's unusually disarming to be caught in a situation where you again have absolutely no control and even the things you do in theory control are controlled by the things you don't. And you still have your dysfunctional family to not really help you through it all... ;)
I just keep asking myself is this really the life that I've been busting my ass for all these years to have? If I had chosen a less genuine path, would things have been any easier? And bonus for having an affliction that no one talks or cares about. There are really still this many shitty cards in the deck after what I've already been dealt? Surely, you jest?
Other things I wish I could focus on, and why I can't...
A satisfying job?
The goal given our situation has been maximum flexibility @ max pay, but to move would likely be for less pay/flexibility. DH has already had to give up his hopes (at least for now) of going out on his own. Not a priority, since who'd pay for the IVF?
Or no job, and going back to school to do something else? Ditto above, at least for now
Travel?
As much as we'd love to reclaim our "found time" for travel, it sadly costs money which is going straight to our RE...
Moving back to the city?
And selling our house at a loss, which doesn't make sense, unless we have to to fund treatments.
Moving somewhere else? Ditto above, plus DH doesn't want to leave.
Trying to figure out what a life without children looks like?
We live this now (albeit clouded by IF treatments), and it doesn't cut it for me. What major life changes (perhaps moving to the moon?) would make this even remotely appealing?
I try to focus on the fact that we are so lucky to have (i.e. planned for) the option to hopefully try again soon, and attempt to escape this nightmare, though it's a real and significant financial hit. Then I think about how I can't believe that for as long as we've been trying we are no closer than we've been before, and our past performance is no guarantee of future success. I'm not one to wallow in self pity, but instead try to figure out how to fix the situation, but the reality is I wish there was a way off this ride, I'm getting so sick of it. It effing blows!!!
I think I did really well with the disappointment before, cycle after cycle after cycle, surgery after surgery after surgery, but it just feels different now. We struck out (big time) in the big leagues, and I'm getting old, and our insurance is gone, and I'm tired. I'm ashamed to say it, but part of me wishes we hadn't gotten pg at all. That would have been "normal", given the roughly 60/40 chance of success. But no, instead we fell into that four percent that are teased with the idea of a baby and that maybe we can masquerade as normal people after all this time, just to have it ripped away.
In my support group last week, a girl talked about how her therapist had helped her work through her control issues and how they stemmed from her neglect as a child. Talk about hitting home. I think we all have control issues to some extent, it's human nature, but for those of us who've dealt with particularly shitty childhoods that we've spent years working hard to distance ourselves from and manage against it's unusually disarming to be caught in a situation where you again have absolutely no control and even the things you do in theory control are controlled by the things you don't. And you still have your dysfunctional family to not really help you through it all... ;)
I just keep asking myself is this really the life that I've been busting my ass for all these years to have? If I had chosen a less genuine path, would things have been any easier? And bonus for having an affliction that no one talks or cares about. There are really still this many shitty cards in the deck after what I've already been dealt? Surely, you jest?
Other things I wish I could focus on, and why I can't...
A satisfying job?
The goal given our situation has been maximum flexibility @ max pay, but to move would likely be for less pay/flexibility. DH has already had to give up his hopes (at least for now) of going out on his own. Not a priority, since who'd pay for the IVF?
Or no job, and going back to school to do something else? Ditto above, at least for now
Travel?
As much as we'd love to reclaim our "found time" for travel, it sadly costs money which is going straight to our RE...
Moving back to the city?
And selling our house at a loss, which doesn't make sense, unless we have to to fund treatments.
Moving somewhere else? Ditto above, plus DH doesn't want to leave.
Trying to figure out what a life without children looks like?
We live this now (albeit clouded by IF treatments), and it doesn't cut it for me. What major life changes (perhaps moving to the moon?) would make this even remotely appealing?
Monday, January 17, 2011
MLK Jr. day
"We must accept finite disappointment, but never lose infinite hope"
-Martin Luther King, Jr.
I am very disappointed that my employer has decided, inexplicably, to stop recognizing today's holiday this year. And not just because I have to work. I've worked places that did and others that didn't, but to just stop one year, is just bizarre. Reason #947528 why this place is messed up.
Anywho, I hope you like the QOTD...
We have made our WTF/next steps mtg. with Dr. S for this Thursday (3 wks post-m/c). My hCG should be very near zero by then (it was 51 last Thurs.) and I'm eager to find out what he is willing/able to test us for and what we'll need to go elsewhere to have done, if anything. I have gotten the names of two local reproductive immunologists if we need them. But I have a feeling that he'll be accommodating, so we'll see. I am actually excited to cycle again, partly because I think the only thing that will help us get over what has happened is to get pg again (and hopefully have it stick) and that now I know that IVF is not nearly as bad as I thought it would be.
Also, the whole one shot with insurance was a huge pressure to the last round and well we know how that turned out. We are planning, as of now, to do shared risk, which unfortunately will be like $20K OOP (eek!) for round one, but we have the "luxury" of knowing that all doesn't ride on this cycle. We'll have more chances if it doesn't work, and get a lot of the $ back, if we bomb out completely.
The acupuncture has helped a lot with the bleeding and the headaches. I will be going back again this week. :)
-Martin Luther King, Jr.
I am very disappointed that my employer has decided, inexplicably, to stop recognizing today's holiday this year. And not just because I have to work. I've worked places that did and others that didn't, but to just stop one year, is just bizarre. Reason #947528 why this place is messed up.
Anywho, I hope you like the QOTD...
We have made our WTF/next steps mtg. with Dr. S for this Thursday (3 wks post-m/c). My hCG should be very near zero by then (it was 51 last Thurs.) and I'm eager to find out what he is willing/able to test us for and what we'll need to go elsewhere to have done, if anything. I have gotten the names of two local reproductive immunologists if we need them. But I have a feeling that he'll be accommodating, so we'll see. I am actually excited to cycle again, partly because I think the only thing that will help us get over what has happened is to get pg again (and hopefully have it stick) and that now I know that IVF is not nearly as bad as I thought it would be.
Also, the whole one shot with insurance was a huge pressure to the last round and well we know how that turned out. We are planning, as of now, to do shared risk, which unfortunately will be like $20K OOP (eek!) for round one, but we have the "luxury" of knowing that all doesn't ride on this cycle. We'll have more chances if it doesn't work, and get a lot of the $ back, if we bomb out completely.
The acupuncture has helped a lot with the bleeding and the headaches. I will be going back again this week. :)
Saturday, January 15, 2011
A few things I've come to understand
1) Why someone would elect to get a D&C after miscarrying. - It seemed kind of vain to me how my RE explained it, but now that I am in my third week of bleeding, I get it. There is nothing quite like the feeling of standing up in a meeting (and writing on a white board) when you feel yet another gush (a clot passing) to make you just wish it would end already.
I finally went back to my acupuncturist today for the first time since before Christmas. I'm not sure why I had put it off, but it was DH who finally said I should go back, and it was a great idea. She feels horribly for us, but is going to help me get rid of all the old and usher in the new. So I'll be seeing a lot of her in the coming weeks. I also ran into my yoga teacher, who I also love, and told her about what happened since we last saw each other. She is a m/c veteran, she had several before having her now toddler daughter, so she understands all too well what it's like. It was great to see them both, but honestly part of me had been kind of dreading it, though I've spent more time with them than any of my RE's over the last year. Maybe that's why, I knew they would be really sad and disappointed too.
2) That I was terribly naive to think that once we got pg, it would be smooth sailing. Silly girl. I knew I could handle whatever pregnancy brought our way. I think I even looked around at those I knew who had experienced loss and thought, "at least they can get pg." I knew it was awful at the time, and now I know first hand just how wrong I was. IF messes with your mind to the point where you put so much stock in getting pg, that you forget that this is just the first of a million steps to bringing home a baby. Now I get it, lesson learned.
I also found out today that watching "The Time Traveler's Wife" after what we've been through the last few weeks, is probably not a great idea. We sat and cried and cried some more.
We like to go out to eat at different restaurants as much as we can, and in Chicago there are endless options, so we were psyched when S got to choose three restaurant gift certificates for presenting a paper at a conference awarded by his work. We used one to go to Avenues for my birthday (well we went in Oct. after he returned from India the first time), and the second to go to Japonais for his birthday in November, and tonight we are using the third at Oceanique in Evanston. We are both looking forward to some really good seafood. :)
I finally went back to my acupuncturist today for the first time since before Christmas. I'm not sure why I had put it off, but it was DH who finally said I should go back, and it was a great idea. She feels horribly for us, but is going to help me get rid of all the old and usher in the new. So I'll be seeing a lot of her in the coming weeks. I also ran into my yoga teacher, who I also love, and told her about what happened since we last saw each other. She is a m/c veteran, she had several before having her now toddler daughter, so she understands all too well what it's like. It was great to see them both, but honestly part of me had been kind of dreading it, though I've spent more time with them than any of my RE's over the last year. Maybe that's why, I knew they would be really sad and disappointed too.
2) That I was terribly naive to think that once we got pg, it would be smooth sailing. Silly girl. I knew I could handle whatever pregnancy brought our way. I think I even looked around at those I knew who had experienced loss and thought, "at least they can get pg." I knew it was awful at the time, and now I know first hand just how wrong I was. IF messes with your mind to the point where you put so much stock in getting pg, that you forget that this is just the first of a million steps to bringing home a baby. Now I get it, lesson learned.
I also found out today that watching "The Time Traveler's Wife" after what we've been through the last few weeks, is probably not a great idea. We sat and cried and cried some more.
We like to go out to eat at different restaurants as much as we can, and in Chicago there are endless options, so we were psyched when S got to choose three restaurant gift certificates for presenting a paper at a conference awarded by his work. We used one to go to Avenues for my birthday (well we went in Oct. after he returned from India the first time), and the second to go to Japonais for his birthday in November, and tonight we are using the third at Oceanique in Evanston. We are both looking forward to some really good seafood. :)
Thursday, January 13, 2011
Two weeks post-m/c
And my hCG is down to 51 (from 335 last Thurs.), the lowest it's been in over six weeks. I am bleeding again/still, passing several big clots in the last day (where these are coming from, I have no idea) but not having any real cramping/pain anymore. Though my headaches are more than making up for it. They really don't prepare you for any of this. It is hard to describe what they feel like. Somewhere between a migraine (like I get unfortunately anytime I drink red wine) and being terribly hungover (I can still vaguely remember what that feels like). Tylenol doesn't touch them, so I'm just fumbling my way through them for now, but I should probably start taking some Excedrin or something since I have to be at work.
Wednesday, January 12, 2011
Bridging the unknown
You'd think by now, I'd be getting comfortable with falling on the wrong side of the odds... Not being able to get pg on own for > 2 years (way < 10%), having to do IVF (1%), losing the baby w/HB (2-4%), and now our miscarriage was not caused by any kind of chromosomal abnormality (well < 50%). But we aren't, so the investigation continues...
The most common causes of a miscarriage in the first trimester are:
Collagen vascular disease (lupus) - not an issue as far as we know
Hormonal problems - who doesn't have hormonal problems, right? I jest, but it's possible that even with my regimen of E2 patches (which ended before the m/c) and P4 supps (which we switched to from PIO after BFP) were not enough to sustain the baby.
Diabetes - not an issue as far as we know
Chromosomal abnormalities - the most common, but NA for us (at least this time)
Congenital abnormalities of the uterus - well I did, but it was fixed. I guess it's possible that this was still an issue, but it is very unlikely...
Other:
Immunologic Disorders - Clotting disorders fall under this one, and it is certainly possible that given my family history (which my RE is aware of- of my sister having a clot, which caused a PE which almost killed her, and now necessitates that she take blood thinners and wear medical support hose for the rest of her life). While on blood thinners, she has gotten pg four times in < four years, without batting an eye. I wonder if stopping the baby aspirin (as directed) after our u/s, may have had an impact on viability. Other disorders like MTHFR deletion and celiac also fall under this.
Untreated Illnesses Such as Thyroid Problems (Both Hyper- and Hypo-Thyroidism) - not an issue as far as we know
Polycystic Ovary Syndrome (PCOS) - though there was that lovely gyne @ Mass Gen who dx me with PCOS without doing any tests in college, I do not have PCOS.
Bacterial/Viral Infections - this is actually an area that really concerns me. In the months leading up to our pg, I was treated for both group B beta strep and HSV-1. DH was treated for pseudomonas. There is also the minute chance that I was exposed to malaria on our trip to India, and although I took malarone, they advise against becoming pg for several months after leaving a malorous area. We knew this was very very small risk.
Lifestyle (Cigarettes, Alcohol, Drugs, Environmental Toxins) - I'm so sure that this isn't our issue (I live like a nun), I'm not even going to get into it.
Tomorrow, I get my hCG tested again. It was 335 last Thursday and should be super low by now. I had basically stopped bleeding, but now have started again what seems like period bleeding, which is a good sign my hCG is now very low. We are going to sit down with our RE in the coming weeks and see what testing he will do for us (these are all simple blood tests) or if we'll need to go elsewhere for testing before we cycle again.
The most common causes of a miscarriage in the first trimester are:
Collagen vascular disease (lupus) - not an issue as far as we know
Hormonal problems - who doesn't have hormonal problems, right? I jest, but it's possible that even with my regimen of E2 patches (which ended before the m/c) and P4 supps (which we switched to from PIO after BFP) were not enough to sustain the baby.
Diabetes - not an issue as far as we know
Chromosomal abnormalities - the most common, but NA for us (at least this time)
Congenital abnormalities of the uterus - well I did, but it was fixed. I guess it's possible that this was still an issue, but it is very unlikely...
Other:
Immunologic Disorders - Clotting disorders fall under this one, and it is certainly possible that given my family history (which my RE is aware of- of my sister having a clot, which caused a PE which almost killed her, and now necessitates that she take blood thinners and wear medical support hose for the rest of her life). While on blood thinners, she has gotten pg four times in < four years, without batting an eye. I wonder if stopping the baby aspirin (as directed) after our u/s, may have had an impact on viability. Other disorders like MTHFR deletion and celiac also fall under this.
Untreated Illnesses Such as Thyroid Problems (Both Hyper- and Hypo-Thyroidism) - not an issue as far as we know
Polycystic Ovary Syndrome (PCOS) - though there was that lovely gyne @ Mass Gen who dx me with PCOS without doing any tests in college, I do not have PCOS.
Bacterial/Viral Infections - this is actually an area that really concerns me. In the months leading up to our pg, I was treated for both group B beta strep and HSV-1. DH was treated for pseudomonas. There is also the minute chance that I was exposed to malaria on our trip to India, and although I took malarone, they advise against becoming pg for several months after leaving a malorous area. We knew this was very very small risk.
Lifestyle (Cigarettes, Alcohol, Drugs, Environmental Toxins) - I'm so sure that this isn't our issue (I live like a nun), I'm not even going to get into it.
Tomorrow, I get my hCG tested again. It was 335 last Thursday and should be super low by now. I had basically stopped bleeding, but now have started again what seems like period bleeding, which is a good sign my hCG is now very low. We are going to sit down with our RE in the coming weeks and see what testing he will do for us (these are all simple blood tests) or if we'll need to go elsewhere for testing before we cycle again.
Tuesday, January 11, 2011
A perfect baby girl...
I had a feeling the baby was a girl and just found out she had 46 perfect chromosomes. I can't begin to describe how sad this makes me.
Subscribe to:
Posts (Atom)
