Wednesday, July 12, 2006

The Emptying Of The Spleen

First, in response to numerous and repeated comments about how I never put pictures of myself in this space, I give you my favorite portrait of recent years (even without make-up!), taken by Bella in a hotel room in Nashville a couple of weeks ago.I like it because it's just out-of-focus enough to lend a softening effect, and also because, since I didn't expect her to actually snap anything for real at that moment, I wasn't making any of my myriad extremely-self-conscious photo-op faces, but rather just looking at my daughter like I tend to look at her about 95% of the time. Do you see the unadulterated,wondering adoration displayed there? I'm hoping to have that under control before she's old enough to use it against me.

So, onward. The state of my health is that my uterus is full of fibroids and polyps once again, and judging from the level of pain I'm experiencing, the endometriosis is raging anew, and gaining ground all the time. The only good news here is that a pelvic CAT-Scan did not reveal any abdominal masses, such as endometrial tumors like the one that nearly killed me back in 2000. So while I'm not currently under immediate threat of death-by-perforated-bowel, hope of restoring my reproductive organs to any kind of working order is slim to none, and as long as they are left intact, they will, indeed, hasten and encourage the growth of endometriosis.

The surgeon is reviewing the tapes of my previous surgery (Yup, I have video with surgeon's narration), and evaluating the possibility of incorporating a surgical microscope in a similar way to what is done in the "good" surgery. It appears that even now, 6 years later, there are still only 5 states in the nation where women have the option of surgical excision of endometriosis to a microscopic clearance: Georgia, Louisiana, California, New York, and Illinois. What is sad and tragic is that this type of surgery is the ONLY thing which can offer any reasonably good outcome in removal of endometriosis. Without the micro-laser surgery, even something to drastic, so invasive and final, as a total hysterectomy, offers no assurance of ending the endometriosis (no matter what many, many uninformed doctors might still be telling you). Endometrial tissue simply is not always visible to the naked eye, and if ANY is left, it WILL grow.

Right now, I'm not even facing the They Probably Won't Even Be Able To GET It All angle, and am just trying my best to deal with, to cope with, to accept the I'm Going To Lose My Uterus And Ovary Forever angle. (Yeah, I said "ovary", singular. I only have the one, but it's the one that gave me Bella, so I'm a bit attached to it.)

I have to admit that all signs indicate that no more children are in the cards for Alex and me. We've been trying to conceive for a while now, which has resulted in only one all-too-brief, pregnancy, which was prematurely ended in miscarriage in December of 2004 (that year will really go down in my personal history as one of the worst of my life). Nothing since then. There's that.

Then there's the endometriosis. I knew, after the last surgery, the "good" surgery with Dr. Cook that, if I did not stay on continuous birth control pills or some similar form of hormone therapy, The Beast would be back. That's just its nature--you don't banish The Beast from the body of a woman whose reproductive organs are intact. The best you can do is hold it at bay with various artificial hormonal sleight-of-hand manuevers. And by not hiring the chair-weilding lion-tamer of continuous birth-control pills for the last 6 years, I've held the door wide open for The Beast, and fed it good food with plenty of growth hormones for the duration of its visit. (Geez--is overuse of metaphor a hormonal condition?)

I didn't start back on birth control pills after Bella was born, because I was a nursing mom. And claims of harmlessness to nursing babies aside, having been through the female-hormone-related nightmare that I have since puberty, there was just no way I was going to do ANYTHING that increased my daughter's chances of having to suffer the way I have. Because MY body? My body takes anything hormonal and just mlutiplies its power. You know how they tell you that if you exclusively breastfeed a baby, you won't have menstrual cycles for a while? Yeah? Well, hello! Mine started back up precisely 28 days after Bella was born, and heavens, was she ever exclusively breastfed--this child didn't start eating solid food until well into her eighth month. So, no continuous BCPs while she was nursing. Which she did until she was two and a half. I could have taken up the pills then.

But, you see (and I know you understand), I wanted another baby. SO desperately. (Still do, in fact, but we'll come back to that, I'm sure.) So we tried and tried and tried. We'd actually, by the time Bella was weaned, already been trying for at least 6 months, and had had our miscarriage. No joy. Looking back, I realize that my body was, even then, probably already overrun with endo, that happy fertility-killer. It just hadn't trumpeted its presence and marched in by the front door--it had crept and slithered and oozed in from the shadows, through underground entryways, until it had a good firm foothold, and then poured on the pain so there'd be no doubt.

So that's where we are now. I can't even really tell you where I am in this grieving process, because I run the gamut from accepting to outraged to bereft to a state of near-total denial. No more babies...ever. No chance, ever again, for the rest of my life, of ever having another child. Alex and Bella waited on me in the lobby of the specialist's office the other day during my consultation, and when I came out, Bella ran up to me, hugged my leg, and asked, "Mommy, did the doctor tell you you could have more babies?" I nearly lost it, and don't have any idea what she absorbed that gave her those clues, but it was like she just laid open my secret heart, where I wasn't even admitting to myself that I'd been hoping for...well, just that. That by some miracle the doctor would come out and tell me I could have more babies.

But no one is going to tell me that. IF I could afford to go see him, The Amazing Dr. Cook might be able to go in and clean everything up and give me another shot, but then again, maybe not this time. Probably not. My life as the mother of a baby is over, never to come again. Bella will live out her life without a sibling. All the baby things I've hung onto and treasured, hoping for a chance to pull them out and use them again with my "next one"...they can go. No more use for them here. I'm crying a lot, and imagine I will just about every time Bella innocently talks about wanting a baby brother or sister, or at any one of a vast number of emotional triggers.

This is a depth of self-pity and regret that I haven't quite experienced before, and it's bound up in so many odd, here-and-there emotions and memories and shattered dreams, that I don't know quite what to do with it. I would really love to hear from any of you who have experiences that relate to this in any way, especially in regard to coping mechanisms that help/helped you.

At the end of all this grief, though, I have no inclination but to remain eternally grateful for the gift that is my daughter. It's sometimes hard to remember that I wasn't even "supposed" to have her! Isabella Faith is our little miracle, and not a day goes by that I don't thank God for this most amazing blessing, far, far beyond what I ever could have deserved.

Point illustrated: This morning, I was awake early, just sitting in the middle of my bed and weeping. I just couldn't seem to stop, and every time I started to get it under control, something else would creep in--an "I really want another baby," and a "But Bella won't have any immediate family left after her father and I are gone," and even, like a thunderbolt from the blue, an "I WANT MY DADDY!" And the sobbing just went on and on until my head hurt, my stomach hurt, and I could hardly see straight. And then I heard it. The rapid thump thump thump thump thump thumpTHUMP THUMP of little bare feet on hardwood floors, getting closer and closer. My bedroom door was flung open, and there stood this perfect little angel--a vision of all thing bright and happy--who declared, "Mommy! The sun is up, and so is your DAUGHTER!!"

And then the smiles came.

34 comments:

  1. I'm sorry belinda. Really. I have nothing to offer, just compassion and sympathy.

    xxoo

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  2. It isn't fair of me to say so, but I do understand the crying jags over the concept that you will never be a Mommy again. The finality of it is so damn... final.

    Granted, I chose to have my tubes tied, but not because I didn't want to have more, but because I couldn't take losing more. What does a woman who has had an infant since she was 17 do with herself when there are no more babies to hold?

    Bella is a beautiful blessing of a child, but I can understand wanting more, and I'm so sorry that you're going through all of this right now. I wish there was something I could do to fix it for you. I would in a second.

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  3. I have felt all these things, Belinda, and unfortunately you need to feel everything. You need to weep, sob, sniffle and cry until you can't catch your breath, then take a deep breath and open your heart to what God wants you to do. There is a reason for everything and our plans aren't always the way God has intended. These are the most difficult times, but sometimes siblings and babies aren't found in our own homes. Sometimes they manifest themselves in something totally different.

    AS you know, your life IS blessed and whatever is in store for you is going to be so magnificent. Remember...there can't be an end without a beginning. Your life will take an exciting turn.

    My thoughts and prayers will be with you.

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  4. Allowing yourself to grieve is important and necessary, blessings or no blessings. Wish I had more but that's it. Take care.

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  5. She really is your sunshine, your only sunshine....as the song goes. Relish in the rays of Bella. You have a beautiful family. But also? Let yourself grieve too - it's healthy. Big hugs, sweetie.

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  6. Oh, honey. I can only say that I'm sorry you are in pain, both in your body and in your heart. I hope you're still coming to BlogHer so I can give you the biggest hug.

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  7. As I read the last line with Bella's words, I was laughing through tears. She never ceases to amaze me with her Bellaness.

    That aside, I'm so, so sorry.
    Love,

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  8. First of all - that photo? You're gorgeous! You look so utterly smitten, it's just beautiful. Ian even mentioned it, and he never notices things like that.

    I'm so, so sorry about the endo prognosis. It's horrid that this is a disease affecting upwards of 5% of all women in the US and only 5 states have a real option for treating it. I don't know what else to say - I know how depressing even a little endo can be, and you definitely have more than a little. *hugs* We'll keep you in our prayers.

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  9. You have every right to have a pity-party... no advice for you, but I'll say a prayer.

    And I FINALLY got to see a pic of you!!! It's awesome.. I can totally see the love in your eyes... :-)

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  10. I'm with Erin on the photo. That is a look of pure love.

    I'm sorry Belinda. This really sucks, and I feel for you guys :(

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  11. Just thinking of you and praying- take all the time you need to grieve.

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  12. I'm sorry. I'm so very sorry. If they do go in and do whatever they need to do, and they happen to find an egg or two, you and Alex can totally borrow my Uterus for 9 months. I mean that.

    And I have that second baby, and I can tell you...it's never enough. Now I want, and won't have, a third.

    I'm so thankful you have Bella. And I will be thinking of you.

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  13. Ugh. This really does suck, and I hate that you are going through such pain and misery. If you come to GA for surgery, let me know, and I'll bring you chocolate. : )

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  14. (HUGS). I really have some of the same feeling with Alan about him having no family.

    If you came to NY for surgery, I'd bring you chocolate.

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  15. You look great in your picture and those unsuspecting ones are the best at capturing true feelings.

    I'm sorry about everything that is going on with your health. Grieving is a natural part of any loss process and I'm thankful you have Bella to give you more smiles.

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  16. You have the same look Bella has in almost every photo of her. Meaning, the ones you took. She feels the same love for you that you do for her.

    ((((Belinda))))

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  17. I'm so very sorry for your pain. I have three beautiful daughters and I understand completely what you mean about your little girl having siblings. You will work your way through this and as a mother you are very blessed already.

    I just wanted to say that I have been reading your blog for a couple of months now and I never commented before because I'm really shy and neglect my own blog, so I never respond. But I just wanted to reach out and let you know that a stranger is crying for you.

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  18. I'm so sorry that you're in pain and feeling sad. I'm not sure this will be any consolation, but I want you to know that I have always LOVED being an only child. My parents and I may make for a small family unit, but we're a tight and loving one nonetheless, perhaps tighter for our smallness. I will keep you in my thoughts and prayers.

    I really enjoy your blog and it means so much to me that you've been so supportive of mine.

    -Lauren

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  19. Belinda, I'm just so sorry. I know the frustration and sadness you must feel because I had to lose my ovaries three years ago. Once my husband and I are gone, that's it. Nothing comes after us because I couldn't have a baby in time.

    Sending you hugs and love. And Bella took a perfect picture of you. You're beautiful.

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  20. Belinda, I wish I could just give you the biggest hug and cry right with because it's so unfair and it sucks so much. If I weren't 54 freaking years old, I'd offer to make a baby for you. I seem to make quirky but really cool ones, but I'm so over the hill it's not funny. But is there a chance, even a tiny chance of something so alternative like surrogacy? I know you've said adoption is out, but maybe your lovely sister or some friend or relative could help. Look, you already have a Queen of a nice hot country to volunteer. Could you even consider this or is it beyond the realm?

    Oh, and MA does do the laser thing. I explored the OB/GYN unit at both Mass Gen and the Brigham and they both do it. Can't say they do it well, but they do it.

    We love you here in Yankeeville. I'll do whatever I can to help you, just let me know.

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  21. margalit--thanks. They DO offer "the laster thing" in many states, including this one...just not the multiple-surgeon-microscope-co2-laser-thing. There are a lot of surgeons and facilities who *think* they're doing the cutting-edge procedure, but according to the endo research sources, still only the "big five" or so who do the "real thing."

    As for other options, I wouldn't count out anything, if it was available, ethical, and felt "right," including adoption (my concerns with adoption are purely from the perspective of the adoptED). I always thought, my whole life, that I'd adopt a child someday, but I never really examined the issue beyond my own selfish needs, so I'd have to do that. Being married to an adopted child has really made me examine issues of personal rights, privacy, etc. For instance, it seems grossly unfair to me that Alex has NO rights to his own medical/genetic identity...and that other people signed those rights away FOR him. Anyway.

    dixie, awww. And thank you. I need to really embrace my good fortune, because I came ver, VERY close to waiting too long. As it is, it's only the attention of an amazing doctor that allowed me to have a wonderful child at "advanced maternal age."

    lauren, Thank you! It really DOES mean a lot to hear from happy, smart, well-adjusted "onlies!" (And you guys, if you need just a laugh break, PLEASE click over to Lauren's "Epistolary Blog" and spend some time in the archives. You won't be sorry.)

    felicia, Bless you. It's comments like those that I always reach for when someone just "doesn't get" how you make wonderful friends on the internet. Thank you.

    chantal, Gee, did YOU make the perfect observation, or WHAT? Thanks, Girlfriend!

    kim, thanks for thinking of me...maybe someday at PCA or something YOU can "sneak" a picture of me and I'll have something I'd actually post. Because this old girl? Can. Not. Smile. For. Photos.

    leslie, I've actually thought about you and Alan, and lara and Luke, and it helps. You're featured in an upcoming post...just a warning.

    poodlebugz, Yaay, New York OR Atlanta, I'm chocolate-covered!! But will you COOK for me? (And really, I would still come to your restaurant, even if it WAS named "Poodlebugz.")

    QoS, Hmmm...tempting. Of course, you'd have to bring the kids and come out here so I could feed and pamper you for 9 months. Still, the kid would probably have latent heathenism and hockey-fandom tendencies...hee. ;-)

    denise, thank you. Prayers. Are. GOOD.

    Mr. Fab, thankya. I always love when I can make YOU stop cracking wise for a moment! Heh.

    laurie, can I invite people to my pity-party? Because then there would be more food, especially if I make it a pot-luck...

    erin, Awww...Thank you, and Ian is trying to make me have a crush on him. What with all the doggie-lurve and all. I *heart* you guys.

    gretchen, thanks. I guess you'd prolly notice if your count was back at 6 again after I visited, huh? Oh, well.

    elizabeth, It doesn't look good for me at BlogHer. See? This close, and I still can't bring myself to SAY the phrase, "I am not coming." I'll work on that in coming days, probably. But thank you.

    karen, thanks...will you come do my hair? ;-)

    andrea, it's enough. It's enough. Thank you.

    jules, thank you for saying TO me so many of the things I've been trying hard to say to myself. Good job, and I appreciate it.

    erin..."had a baby since 17..." wow. Thanks for that. For me, it's different, a feeling of, "Hey, I JUST found out about what I'd been missing out on all these years--it CAN'T be OVER already!"

    Thanks, everyone. I'm so touched by your words...you have NO idea.

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  22. jess, I didn't mean to leave you out, you sweet little first-commenter, you! Thank you, my fellow insomniac.

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  23. You are in my thoughts and prayers Belinda. In your own special ways you, Alex and Bella give me hope every day. Love You.

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  24. I've been reading your blog for a while now, and I've come close to a tear now and then. Not today, I full on cried for you. You shouldn't make your readers cry! Then they run the risk of damaging their laptops with their tears!

    I don't believe that God intends our trials to be easy ones, but your greatest blessings are with you right now.

    Hugs, sweetie.

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  25. You always manage to make me SOB at weird times of day (it's 4:30 AM...I can't sleep). I'm sure my husband thinks I'm crazy. lol While you are very lucky to have Bella, Bella is EXTREMELY, over-the-top lucky to have you. No one will ever love her the way her mommy does. I think that just her presence alone will help shorten the grieving process for you. So surround yourself with Bella because if those smiles can't cure all, then nothing can! (((hugs)))

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  26. I'd like to throw my uterus in the ring, so to speak. No pampering necessary. I'll take any time with you I can get.

    Love the picture, honey! You're a looker!

    Bella? Well, as I teared up through reading your words I was hoping against hope that there would be a Beautiful Bella Moment somewhere. You did not disappoint. She does not disappoint.

    Much prayers, love, and taking care of my uterus should you need it.

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  27. I have a hard time smiling for pictures, but I make myself. I look more pleasant:o)

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  28. awww, shit belinda. i'm really so sorry you've had to go through this. take care of yourself and revel in that gorgeous daughter...

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  29. I'm glad to see a photo of you, you look darling!

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  30. Sorry about all that medical news, Belinda. So happy that you have Bella to instantly snap you out of the doldrums, though. She really is a miracle in more ways than one.

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  31. I think everyone above has said it best. Please just know there are those out there thinking about you and sending positive vibes and prayers.

    I have to nod my head to the quote by someone that something has to end for something good to begin, I like that idea, as we say in Islam, InshAllah it will be as God intended something good.

    and ps - if you find they do that surgery in DC (maybe at Georgetown) we insist you stay with us!

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  32. Belinda, I know exactly how you feel because I NEVER intended my Juli to be an only. But when I was told another childbirth would possibly be fatal, I decided it was better for her to have a Mommy than a sibling. I won't say it wasn't painful though, watching all my friends having more kids.

    But it turned out well. Juli and I are so incredibly close, and always have been. I thanked God every day that, if I only got to have one, at least He gave me Juli. She is my greatest accomplishment, and the light of my life. And I can tell from your Flickr photos that you and Bella are as devoted to each other as Juli and I are.

    That said, you can still consider alternatives such as surrogacy or adoption (as I see from the comments that you are). You never know what lies ahead in life.

    P.S. The photo of you is WONDERFUL!

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  33. Hello. I came to your site from Mochas and after reading this post I think I may forget about work today and get caught up with your blog.
    My mom was told at 19 she'd never be able to have children. She didn't accept this and went to countless doctors trying to find one that could offer her another option. She had surgery every year to clean up her uterus and tubes and when she was 25 she had me. I'm what she calls her miracle baby. Seven years later she had my sister.
    I got my period when I was 11 and from the start I knew they couldn't be normal. At 16 I went on birth control to regulate these monsters that would keep me bed ridden for a few days at it's worst and on vicodin (which eventually did nothing) at it's best. My doctors tried all kinds of hormone therapy without listening to me, without believing I could have a real problem because as far as they were concerned I was too young to have anything serious. I was overreacting.
    I finally convinced my doctor to do discovery surgery, just to see what was going on. My mom came with me that day, almost 2 years ago. I was in a relationship with my now husband at the time. I was so beyond scared at all the maybes. I remember barely waking up and feeling the other bandage right above my pubic line. She had gone in. I was right.
    I have endo, and she lasered it out as much as she could. She came in as I was recovering and said it didn't look like I had enough damage to prevent me from having children. I burst into tears and wept while my mom held me, crying silently. I hadn't talked about that possibility with my doctor beforehand, nor with my mom, but I didn't have to. I was better for a while, but I'm now about to start talking to my doctor because I'm getting worse. I've been putting it off because I'm terrified.
    The only thing that has comforted me is my faith in my future. I will be a mother, biologically or not. My mother managed to have me, if I'm strong enough maybe I'll be so lucky? I have a fantastic husband that's my rock.
    I'm sorry I've rambled on so long, I should have made my own entry on my site. I'm new to blogging though and find this a little too personal to reveal so far. I sincerely wish you all the best and hope you see your miracle in your daughter.

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