I didn't get a chance to write about this last week because of the book tour, but I chose the right waiting room chair at the new hematologist's office. Right after I sat down, I realized why all the chairs were empty on that side of the room and why everyone stared at me when I took my seat. There was an elderly couple beside me and while it wasn't clear who was the patient and who was simply accompanying the other to their appointment, the woman was loudly running through a monologue that stopped and started without warning.
"I look better now. I better look now. I now look better. I taller look now. I am taller. I look taller and I am taller and I look better and I am awful. I told him. I told him I was looking better. I look better all the time. Why did he say that to me? Why did he say that I look better? Why did he taller me? Why didn't he taller me? I was looking tall at you."
I used to volunteer at a hospital in the oncology unit and we had a woman who was losing the ability to remember words. Each time she lost a word, she replaced it with the word "depends." So in the beginning, she would say things like, "pass me that depends, Melissa." And by the end, her sentences were mostly comprised of the word "depends." This woman in the waiting room reminded me of the depends woman and it felt like a little return to that woman in the hospital. I spent the whole morning searching for small returns in some pre-appointment mental foot dragging.
Before the appointment, I had gone to the library across the street from the hematologist's office. It has this very distinct smell that I associate with a high school boyfriend (and this is coming from the woman who sat there sniffing her arms during her birthday to enjoy the memories of the bug spray). I sat in the library and considered writing him an email to ask if there was any possible way he could time travel from California to Maryland in the next half hour to accompany me on this appointment because I just wanted something familiar nearby. I mean, yes, I wanted Josh at the appointment. But what I also wanted in that moment was someone from long ago nearby. I wanted someone that was only associated with pre-baby-making. That high school boyfriend is definitely in the category of "babies were the last thing on my mind."
In addition to taking comfort in anything that reminded me of anything that was from the pre-baby-making era, I was also looking for signs. Signs that we were on the right path. Or doing the right thing. Or making a good choice. There was a Kandinsky poster in the examination room and I took that as a good sign. I was a big Kandinsky fan back in high school and college. Less appreciative (but still enjoy) his work now. It felt like a small return to college. Which was mostly pre-baby. Babies seeped into conscious thought during my junior year. But you take what you can get. And poor Kandinsky spans both the pre-baby-thought and baby-thought years.
This is what I learned as we talked about blood: In addition to the MTHFR mutation, I have another problem--the PAI-1 4G/4G gene--which the other hematologist never told me. Both hematologists agree that I should go on Lovenox once I'm pregnant. My OB was wrong when he told me that Lovenox could be used beforehand to attain pregnancy if the clotting factor was the reason I wasn't getting pregnant. Or--more accurately--they do give Lovenox as a last resort treatment sometimes for women before they receive a positive beta, but in my particular case, he doesn't recommend it. He recommends that I return to the RE. At this point, he can't really do anything to get my pregnant; only keep me pregnant.
He left the room and I wanted to have a good cry. I wanted to go backwards in time and when my new OB mentioned trying at home, hold my hand up and say, "let's not give any false hope, okay?" I just felt sad that it's like this. I'll do the injections and I'll go back to the RE and everything will be fine. But I'm sad that it's like this and not like something else.
But I really did like the new hematologist and he was very kind and included me in the discussion rather than talking at me and praised my medical knowledge and investment in understanding my own treatments and problems. He drew more blood to rerun some tests and I'll return to him in a few weeks to discuss that.
When I passed through the waiting room at the end of the appointment, the woman was standing in the center of the room with the man at her arm. And she was yelling the most profound thing I've heard all week: "you've got to help them to help." And that's just it. It isn't helpful when you say the words that the person wants to hear. It's help when you help me. And sometimes I don't need kindness. Sometimes, even if I am prone to mentally time travel, I just need my doctor to help me remain in reality.
Sunday, June 10, 2007
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23 comments:
too mentally blurry to leave a good comment, but I'm reading and thinking of you. The doc being able to help keep you pregnant once you get that way is a good step. Hopefully you'll have to use his expertise soon.
UGH I hate appointments that don't end the way you want them too. I hate the feeling of needing a really good cry but you are in a very public place. I am glad he was kind and understanding but CRAP!
The little woman made me very very sad. :(
sunny said it well.
we stirrup queens should have a means of transporting into that exam room with you when needed. i wish the answers had been simpler for you, Mel. (((hug)))
thinking of you!
I'm sorry, I wish your OB had been more forthright. We don't go to doctors to be told what we want to hear, we go to be told the truth.
i'm sorry. it's so frustrating not to be able to have a feeling of continutity between all of the various doctors. hopefully the hematologist and your OB will chat and everything will come together beautifully and you will be on Lovenox soon.
I'm sorry. I wish I had something else more profound to say but know you're in my thoughts.
And that poor woman in the office. I worked oncology for a while and in so many ways it's heart breaking.
I'm sorry. I'm thinking of you.
And thank you for leaving a nice note on my blog.
That really sucks, I'm sorry he's not going to be able to help you some other way, some better way. Knowing the reality is good, but it sucks sometimes.
I just want to clarify that I really felt lucky that I chose that seat next to the woman (I wasn't being facetious). I probably wouldn't have noticed her or paid attention to her in the waiting room if I hadn't sat down next to her in the first place. And I would have missed that profound thought that the end of the office visit when I returned to the waiting room.
Thank you for the good thoughts. I am happy that he can do something for me--and certainly maintaining a pregnancy and getting me to term would be ideal if the Lovenox works. But now I need to actually get pregnant. If I can't get pregnant, the blood thinners seem like a moot point.
Oh yeah, I totally agree. You have to help them to help. True true.
But what a sad old lady. :( Hopefully she doesn't realize.
I'm the opposite of you. I started out at the 12 month mark literally begging my doc to NOT make me go home and try more alone. I mean come on, 12 months? at 20 years old? But I totally know what you mean...oht o have been one of those blissfully unare fertile women who just thinks everything will be ok.
I still think that. I think...I wonder if so-and-so worries about miscarriage like I still do. (So-and-so being whomever I'm with at the time who had no issues getting pregnant.)
I hope you get pregnant soon and it's uneventfully wonderful. Even if it can't get there in the perfect way, it can still be perfect.
Mel,
I have the exact same blood clotting gene as you know. And after 2 different hematologists and a couple of RE's I've learned that they don't know everything about this gene yet. It's a newer one.
For example, all of them have told me to stay on baby aspirin, every single day for the rest of my life, whether I'm trying to get pregnant or not. And my RE's both agreed that baby aspirin would be helpful in getting me pregnant since it would help increase blood flow to the ovarian artery and the uterine artery by preventing a build up of fibrin and preventing stiffness in the arteries.
I think your RE might disagree about heparin not being useful as well. Don't lose hope.
XX
Well.
First of all, it's amazing how seemingly random sentences can mean so much if they enter our brains in just the right way. And from someone who the others in the waiting room had dismissed as a person to be avoided - adds a little extra touch. I think she gives good advice.
And I love your last paragraph about giving the truth rather than what you want to hear. I'd rather it that way, too.
I'm sorry it's not like you want it to be.
And I know the feeling about wanting to reach back and be with a pre-infertility person - as if we can bring those times and that mood back again.
Bea
Hi there,
Just wanted to add my 2 cents and say sorry for the recent set back. I'd be awfully frustrated too. Wouldn't be nice if we could all just find the silver bullet to fix our problems. Seems like one benefit of getting some sort of diagnosis ought to be that they can do something about it!
take care & hugs your way
"But I'm sad that it's like this and not like something else."
How accurately that describes so much of IF treatment... (And so much more eloquent than saying "fuck this shit".)
I am all about getting the truth so that I know exactly what's going on, and exactly what to expect. I'm sorry that you didn't hear the truth you wanted to hear.
I also just want to commend you on such a wonderfully written entry over all.
For some reason, imagining that things could be worse never helps you to feel better. But imagining that things could be better always effectively leaves me feeling worse.
I am sorry that things were not the "better" that you had hoped for!
I am so sorry Mel. Holding your hand and quietly sitting with you.
I am so sorry...sending you a huge cyber hug.
~Carole
I think it is comforting to know that he CAN keep you pregnant once you do get there! Now we just need to get that RE to work his magic. Sending you lots of positive thoughts and hugs.
I can relate to your associations of pre-baby making time. I think this underlines the idea of infertility as an identity crisis -- that infertility serves as a dividing point in one's personal history.
I'm sorry about your latest set-back. That sucks.
Being in our position, we have to be our own best advocate - we have to take the information we learn from each doctor, craft it into something that makes sense, ask more questions, and get more answers. Lather, rinse, repeat. It's a rediculous process...
...did I mention I NEVER saw a hemotologist?!?!?! Neither my GP, ob/gyn or MFM thought it necessary.
I am sorry you didn't get all of the answers you wanted. I have felt that way too many times myself.
Here, here! What a wonderful post. Truth, albeit often painful, at least takes you toward answers.
I'm so sorry you were so sad, but so amazed at your strength. You are on my mind.
Were you able to have that cry, if you felt like you needed it later? Let yourself grieve that it is like this and not the way you hoped it would be.
I'm glad that you have a great, supportive doc who will tell it to you like it is. But I'm sorry that the situation is what it is.
So sorry that things didn't end up being that "something else."
I'm glad that you sat next to the woman.
I wish reality turned out to be happier more often than it seems to.
Can we pour you a drink?
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