Tuesday, October 1, 2013
This is our third time attending this event. I remember the first time Mitchell and I attended to honor Liam. We went alone. I was very, very pregnant with Riley. It rained on us the entire time. Very few people actually walked around the lake after the name reading because it was cold and down-right miserable.
I remember reading the names printed in the program and just about losing it over the repeats of last names..... Hall, Hall, Hall.... Schultz, Schultz, Schultz..... Holly, Holly, Holly... All with different first names and dates of birth/death. My heart ached for those parents. Coping with the death of an infant once....ok... But 3 times?!? I didn't understand how those women were breathing, how they could keep trying, how they kept on living with such an enormous hole in their hearts.
And now...2 years later. Jackson, Jackson, Jackson, Jackson. Liam, Riley, Ben and Archer. I am the pitied one. The one the mom's with one loss see and think "it could be worse, look at that lady." "Thank God we only have to do this once, not four times." "Oh those poor parents. How are they still breathing?"
To answer your question, Fictional-Pretend-Imaginary-Lady, I don't know.
The walk was especially hard this year for reasons that are so hard to explain. See...People that have lost babies and now have their rainbow...drive me crazy. They hurt my heart. I feel bitter, sad, and oh so jealous. I will never have a rainbow.
Yes, loss happens, but it doesn't happen to everyone. People in the loss community will tell you that not all babies die. It is intended to give pregnant women hope. It's true, not all babies die, but mine do.
Parents who have lost a baby deserve to have another more so than a mom with 5 kids who has absolutely no clue whatsoever how damned lucky she is. They deserve it more. They deserve a happy ending. But it hurts me more.
Today kicks off Infant Loss and Awareness Month as well as Breast Cancer Awareness Month....Ha! I guess October is my month......
I am going to try once again to "capture my grief." Carly Marie runs this program each October where you capture your grief in photos. One photo each day. Last year I started but it was just too damned hard for me. This year I am going to attempt it again
Tuesday, August 20, 2013
Click here if you would like to read the article.
I think I will be carrying my silly little paper around with me all day. I have an infusion later (assuming decent platelet counts) and plan to show the nurses my paper like a proud parent.
Somehow, I am slightly sad. (Maybe it's my Nyquil haze.) I guess it is because I'd rather have my babes than an article. I'm tired of dealing with the extraordinary. I would like a plain, boring life thank you very much.
Maybe someone, somewhere will read this and be inspired. Maybe someone who just lost a baby will realize that they aren't alone; that there are lots of use wading through the heartbreak every. damned. day. Maybe someone will be able to get out of bed tomorrow and go on a walk. Maybe that's too optimistic for one little article, but those are my hopes.
Friday, August 9, 2013
I love you little Squiggles. Good-bye.
Tuesday, July 30, 2013
I hate slides. No, seriously. They scare the shit out of me. I'm not talking about huge slides, just regular old playground slides. Scare the crap out of me.
So in June, I decided to go with my husband, my son, and my nephew down THIS:
|Yeah, that's me up there on the left.....peeing my pants.|
I have lived in Colorado my entire life and have never been skiing. Never. Never even had a pair of skis on my feet. I have always been too timid and honestly afraid of getting hurt. Well screw that.
|Glasscraft in Golden, CO|
|Anyone know where I can get a quick-release, pink, satin cape for my adventure?|
Wednesday, July 24, 2013
It is somehow apt that today is the day my twins were due. Today the day of my last chemo treatment. The twins who saved my life.
You see, my tumor was found at my 8 week OB appointment. There is no way it would have been found as early if I hadn't been carrying my boys.
We all know due dates don't mean shit. No one is every born on their due dates. My boys wouldn't have been born today because twin pregnancies don't make it to 40 weeks. Even when just Archer was left, he wouldn't have been born tomorrow because chemotherapy would have dictated my induction date.
But still....all my papers said Estimated Due Date 7/23. It was still the due date I told people when they asked (along with a lengthy explanation about how they wouldn't be born then)
I have never felt the meaning of the word "bittersweet" so intensely.
Thank you, my baby boys, for saving me life. Love you.
Thursday, July 11, 2013
So technically according that that definition I am still a female because I have born children (living and otherwise) and may or may not have the ability to produce eggs once this whole chemo torture is done and over with. I feel like getting hung up on the egg production thing which makes no sense. I feel that any woman that has gone through menopause or has had their ovaries/uterus removed are just as female as a hot-to-trot, bleeding co-ed (yes, I just went there), so why doesn't the definition extend to myself??
I am not saying that I am male or identify with the male gender or being dude in general; I am a woman. But, I don't feel feminine. And I should, right? Femininity is the nature of the female sex. I sort of produce eggs (maybe......) and have had young so I a female. Therefore, I am feminine.
I was never the stereotypical girl (I leave that up to my little sister). Pink, bows, sparkles, make-up, tulle, endless products, fancy hair, princesses, heels, Barbie, glitter, nails, bleeeahhh....excuse me....I just threw up in my mouth a little bit.... Just not me. But now I feel like every ounce of my female being is gone.
My breasts have been taken away and while my expanders are kick ass and way better than the alternative, the truth is that I have mutant breasts. I have huge scars, weird puckering skin, blobs and general weirdness. These things are freaky looking. Period. And while their function is not to boost one's attractiveness, they are no longer desirable. I can't imagine the cringe they would receive from an unsuspecting man (I have to in part include my husband in this category although I will credit him with never, ever cringing). What I have for years considered my best physical feature is now scary looking.
I am bald. And the longer I am bald, the less I give a shit about covering up my chrome dome. As previously posted, I used to think my hair to be yucky (thanks for that society and modern media), but now I would be stoked to have any hair even if it just meant getting my GI Jane look back. Being bald makes me feel like Smeagol from Lord of the Rings. Here is a little reference for ya:
I would just like to feel pretty, to feel girly, to feel attractive (to at least my husband). Just for a little while. For a day, a few hours, or even just 30 minutes
Wednesday, July 3, 2013
Monday, July 1, 2013
Basic rule of thumb.... If you give enough of a crap to read the last post, feel bad, and send me a text/message/comment, you m'dear, are not the problem.
A distant relative you don't actually know very well at all sends your kid fun little gifts in the mail. A network of people you have NEVER EVEN MET send you boxes of love. Friends who probably aren't in the financial situation to do so continually make you dinners and force you to take them. Friend to take off work to take you to chemo, even if that means taking you 3 times in a week because it keeps being cancelled.
What I am so sad about this morning are those people who are supposed to help, but don't. The people you want to support, care for, and love you, but they are....what? too busy??
I have come to accept that some people in my life simply can't handle it. They can't handle talking about my disease or my children. Some of you can't handle it. It makes me sad. It hurts my heart. Because I have to handle it all the time 24 hours a day 7 days a week and a simple hug, phone call, "hey how are you?" from some very specific people would be really nice right now.
I recently attended a butterfly release for child loss. The names of all of the babies are read and we all release butterflies. It is very beautiful and I love it. My grief for the loss of Archer really hit me at this event and has been with me ever since. I am part of this huge, awful baby grief community right in my own backyard. I was already tapped into this network before Archer died. And I am realizing that in my local grief community....of the people I actually know and have meet face to face....no one called me..... no one send me a card.... no one has asked to see pictures of my son... no one sent me a pizza... no one sent me flowers.
I am trying to look at the positives. To see the people who came out of the periphery to help and support me. I love and appreciate your caring support. I am trying not to see the people right in my face who I feel have let me down. Thank you, Unexpected Supporters. I appreciate every little thing you have done and continue to do
Tuesday, April 16, 2013
Wednesday, March 20, 2013
When I am down and depressed, I feel so alone and lonely. The stupid, evil voices in my head tell me that no one cares about me, that I am alone, that people are sick and tired of all my crap and the shit that keeps happening to me (I mean how long can you feel bad for someone, right?)
This is such a complete load of bullshit! Because then I will get a Facebook message from someone I only met one time who remembers me and thinks about me. A friend will start a fundraiser (just because she is awesome) and people donate $310 in under 24 hours. What?!?! My eye doctor will send me a card. My plastic surgeon's office sent me flowers! People that I haven't been that nice to for whatever reason (founded or not) send me messages.
These (sometimes) small things make me realize that the voices in my head feed me complete and utter shit. Shut up, stupidheads.
I love you all.
Friday, March 8, 2013
I am supposed to take them now to keep me alive; to prevent a blood clot in me. I still don't want to do the stupid, fucking shots. It's just another reminder (like I would ever forget) that the initial reason for the shots has left me. That my baby is gone.....again...
Thursday, March 7, 2013
The days after I leave my baby at the hospital I can smell him/her everywhere. My hands, soaps, certain foods, my skin. I can't eat certain things because they smell like or remind me of my baby. Applesauce bread, red meat, salad, bacon, eggs. Most of those aversions will stick with me forever. I still can't eat hamburger since Riley died a year and three months ago. I'll never buy hamburger again.
A few weeks after I have seen my baby for the last time, the smells start to fade. I will find myself shoving my nose in his blanket, sniffing the hospital gown that I stole (because I held him on my chest in it. He stained the whole front between my bionic breasts. I took it knowing I'll keep that scrap of fabric forever), taking deep whiffs of the Kleenex I put between me and him to try to keep him cool so he wouldn't break down as quickly. The smell will fade, but I will continue to search for it and for him
Riley's smell has faded from everything she touched, so I know Archer's will too. The thought crushes me and throws me into fits of panic.
I don't want to shower and haven't since giving birth. I did the same with Riley. I feel like I am washing Archer off of me. It feels like I am washing the bit of him that I have left right down the drain. The amniotic fluid that we shared, his blood and his fluids right down the drain when I want to keep it forever. (I am aware of how crazy this sounds. Especially if you haven't lost a baby or had a child whose body was still in good shape because they hadn't died very long before you got to see them. I know. But unfortunately, some of you will understand...).
I know I am done having children. Losing 4 is too much. I can't do this again. I can't give birth to and hold dead child all night again. I can't say goodbye to and leave another baby in the hospital. It is too much.
Knowing that I am done, hurts almost as much as Archer's death. Never again will I be pregnant. I will never feel a baby kick again. I will never have another newborn. I will never give birth again. I won't get to feel another baby grow and move inside of me. Although pregnancy was always rough on me, (I was sick, bitchy, and exhausted) I loved getting to feel my baby. It was this amazing special connection with my baby. I'll never get that again and it's crushing.
It means my son is alone. He doesn't get the baby brother/sister that he has been told 3 times will be coming to live with us. I didn't want him to be alone.
I would love to adopt a child. But I find it hard to believe that anyone would give a child to a woman who is fighting an aggressive form of Stage 3 breast cancer. "I might not be around in 3 years, but please can I have that kid you are in charge of?" I would never chose someone who is sickly and might not be around later to take care of my baby. Of course, I would chose the healthy couple; I would chose stability. Not the home with a mom who is sick from chemo, radiation and multiple surgeries and unable to care for herself, much less a new kiddo.
I know this all feels very self-defeated but it feels like the truth of the moment.
Wednesday, February 13, 2013
At preschool they give the kids these boxes to collect change for children with leukemia. Hunter started asking us for money for kids with cancer. Then he wanted to go ask neighbors! So we threw on our jackets (ok a ratty blanket in my case) and asked a couple neighbors for "money...or cash....or coins...." for kids with cancer. Now he wants to know who he can ask tomorrow after sleepy time.
My son is simply amazing.
Thursday, January 31, 2013
My lovely surgical drains. That long straight bit will actually be IN my body to collect fluids; it is sutured into me. I will have two on each side. I'll pretty much look like this:
6 days and counting. 'Til the "icky stuff in Mommie's booby" is out of me and in the trash where it belongs. In 6 days, I become the Bionic Woman.
Friday, January 25, 2013
I started this for ME. An online journaly thing, for ME. It was originally kept a complete secret. Someone on Stillbirthday mentioned to me that she reads everything comment or post I wrote and sometimes felt the exact same way I was feeling. That made me start telling people about the blog. If one person in the world read one thing and it made her feel .01% better or understood or like less of a horrible person (because let's face it. I don't pull punches. If I feel something I let myself feel it and will say it here. Even if it's jacked up), it was worth putting all my tender bits out there for the world to see. I have always hid my squishy bits. Held friends at an arm's length (cause it's safer!). I am just now fully opening up to my friend, Natalie, of over 15 years! I am just now letting people in. So decided to let all of you in (SCARY) if I would maybe help one grieving mom feel like less of a crazy freak. (because we are a special brand of crazy...).
So no. I will not change my comments settings. If someone wants to post something and it's easier for them to do so anonymously then rock on my friend. But if they are hurtful comments, I'm just going to be deleting them. This is for ME, remember?
Anonymous361 (for some reason a numbered title is needed....), I don't have the slightest clue who you are and I don't care. I'm done dissecting the garbage you have to say and trying to equate it to the people in my life. People who have offered help but I didn't take (The Stickels?? No way), people who have lost babies (Eryn, Ericka, Amber, Rosie, Sarah, Leah, Bambi, Carolyne, Jenn, OMG this list is so long....), people who I have said mean comments around about those scarey, scarey children or preggos (Amber, Natalie. Leah, this list is probably long too)... ENOUGH.
I'm done. I don't know a lot about God. But I know He is kind. After all I've been through (which He chose not to change), I know He would never talk to me in such a vicious manner.
Anyone still reading, please don't take this as the entire Christian populous because they are not all like this. I know quite a few (Rachael, Natalie, Teresa, Amber, Rosie, Elsa, Angie, Michele) who are just kind, kind people. They behave in a way their God would be proud of.
El Fin. Off to chase my son.
Tuesday, January 22, 2013
Like a countdown to.....something ending. I'm preparing like a nutcase. Making and freezing food for my family to eat, buying pillows for my recovery, trying to get my son's doctors appointments taken care of, getting him new glasses, rearranging my room for a hospital bed (maybe...?), cleaning the crap out of my house so no one else has to deal with it, stockpiling food and supplies.
I feel like I'm preparing for my death. And in a sense I am. I'm preparing for me not to be around anymore. (Don't even get me started on the risks of general anesthesia....) The fact of the matter is, I have NO idea what the next year holds for me in terms of ability to function. I am counting on being unable to do much for the rest of 2013.... that feels like an eternity. I am having a hard time seeing the light at the end of this tunnel.
I know it's not the end of everything (although, it is the end of "the girls"). I know it's the beginning. But it's the beginning of something I don't want to do. Something I am terrified of. A fight I don't want any part in. It's like the beginning of delivering my sleeping baby girl. It's something I am being forced to do. I don't want to, but it's inevitable. And every moment sucks. It is the beginning of awful.
Though that doesn't seem really true either does it? Losing my babies has been awful. I've been living in awful. But this time I'm getting a heads up.
"Heeeey. Just so ya know. The next year or so for you is going to be shit. You're going to be sick, exhausted, and incapable of doing much. Hopefully you don't completely miss out on the birth and growth of your baby and hopefully you get to see some of your beautiful son grow another year older. Maybe you won't miss everything..."
I know I'm being pessimistic. I know some people do well on chemotherapy. I just can't imagine that a pregnant someone is going to do that awesome on chemotherapy or recovering from major surgery. See? No light at the end of my tunnel. Just dark scariness.
I can't even think about my Baby Squiggles (that babe is always wiggling away when it's time for her close up). This baby HAS to be okay because I don't think I can handle a-n-y m-o-r-e.
Saturday, January 19, 2013
In about 3 weeks, I will be having a bilateral mastectomy. My plastic surgeon will be there and will place expanders under my muscle tissue for my eventual reconstruction. After I heal from having 2 bits of my woman-hood literally chopped off (approximately 4-8 weeks), I will begin a 12-week-round of chemotherapy. Because of the type of medication, I have been told that I will lose my hair, I will be sick, and I will be exhausted.
After the first round of chemo is completed, I will have my baby (yes, all of the previously mentioned treatment is while pregnant). I don't know when exactly this will be. My hopes is that we can get it close to 36 or 37 weeks for the baby's well being. This baby will be born alive because there are no other choices. I don't know how I will continue on if my Squiggles dies. How can I fight cancer if my child dies?
After healing from delivery for 4 weeks. I begin round 2 of chemotherapy, another 12 week stint. After I finish this round of chemo, I should be able to get my reconstructive surgery although I will be on antibody injections for a full year. For those of you playing along at home, that puts reconstruction around October or November.
The realization is hitting me that I am utterly terrified of what is going to happen to me post surgery. Mentally. I fear that I am going to completely lose what is left of my mind. That I will be thrown back into the pits of grief that I struggled and worked so hard to get through after my Riley died. That hole is so hard to get out of. I don't want to go in again.
I am trying to envision my time in the hospital. What am I going to do? Just not look down at my chest ever again?? That first time they unwrap me to check the incisions..... Do I just look at the ceiling to avoid mental collapse? I've looked and prayed at that ceiling before, prayed hard that Riley was fine and this was all just a crazy mistake. I don't want to look at that ceiling again. Praying to it doesn't help either.
At first I thought I would be fine in the hospital after mutilation, but now I'm wondering if I should be left alone. Don't worry; I have no plans to slit my wrists with my IV needle (Squiggles takes care of that), but I just foresee the depression crashing in and crushing me under its hopeless weight. I will certainly be unable to ask for help if I need it.
Will I ever stop crying? Good thing about being in the hospital IV saline: no dehydration when you cry like a crushed soul.
Tuesday, January 8, 2013
I met with a breast surgeon today. She went ahead and ripped my rose colored glasses right off my face. We still don't have any answer yet, no plan as to what step is next. Not until I get my genetic counseling done and met with an oncologist.
But here it is: If I wasn't pregnant, they could do a lumpectomy, radiate the hell out of me and on we would go (at least it would be an option). But being pregnant kills most of your choices. Without terminating the pregnancy, I am left with 2 options.
1. full mastectomy of the cancer boobie.
2. chemo now while pregnant then maybe lumpectomy after the baby is born (this is ONLY if the oncologist says that I flat out need chemo at some point).
Oh, but there's a third option.....
I always like to make decisions based on statistics. I love statistics, but in this case they are staggering and scare the crap out of me. The genetic counselor will be testing me for something called BRACG. If I am BRACG positive, I have a 60% chance of getting breast cancer again. If I am BRACG negative, I will have a 1% chance of getting breast cancer again for each year I am alive..... I'm 29.... That means that by the time I'm 80 I will have a 50% chance of getting breast cancer again.
Flip a coin. If it's heads, I don't get breast cancer again. If it's tails, round #2!!
So, holy hell, what do you do to prevent me from getting cancer again?!?!?
Chop 'em both off. Even the healthy one. That's it. That's my only option to kill those awful statistics.
Even though my breasts are the only part of my body that I have liked for the majority of my life (excluding prepubescence...dur), that's not what kills me. It's the breastfeeding. I won't be able to breastfeed this baby. It's crushing. But this doctor made a good point while she held my hand as I cried about my boobies:
A formula fed baby with a healthy, alive mommie is better off than a breastfed baby with no mommie.
I haven't made any decisions yet. Not until I get all the results and talk to the oncologist (Friday the 18th for those of you playing along in the game's "at home" version). ...oh and talk more to my husband...
But I'm not so sure there is a decision to be made....
Saturday, January 5, 2013
They can remove the tumor while you a pregnant. A nurse practitioner told me they may be able to use a local anesthetic just like they did when they did my biopsy (ps. I felt not a thing), then treat me later with radiation or.....chemo or something after I am healed from baby.
The medical people have been amazing (I have never said that before in my life). I have 4 medical offices communicating together without me at all. The surgeon's office actually called ME to make an appointment.
So I go to a breast surgeon on Tuesday and have heard from 3 sources that the doctor is AMAZING and very compassionate. I have been told I will love her. I will get my options risks and such from her and then we will make a plan. I think they have to wait til 2nd trimester to take the lump out (which is really close actually)
Mentally, I am up and down. I spent last weekend depressed about Baby B and was convinced Baby A had died too. I'm trying not to spend this weekend the same way, but it's up and down. I'm realizing I have been depressed for a couple weeks and can't fight back very much right now.
I am trying so hard to learn to accept help. I am already much better about this than I was years ago but still don't want to accept nice things from people. So if people offer, I am trying to take it.....even if I don't need it right now