Saturday, June 21, 2014

Guest Blog- Queen V

I would like to introduce you all to a friend of mine, Virginia Miller. During the last year or so journey, I have reached out to my readers, Facebook friends, What to Expect Forum pals, and Twitter followers. The feedback has been amazing, the outpouring of support overwhelming, and I have made connections with a lot of new people and learned a ton about myself an others. But there is no where that I have received more support than on the molar pregnancy support group I belong to. Emily, Virginia, Audra, Crystal, Cristina, Irma, Bibi, Jennifer(s,) Jacinta, Injerd, and various others (because if I listed all the names, we would have a 20 page blog post.) These women are my sisters. They understand me in a way no one else quite can. I am fortunate and blessed to have them in my life. I am honored to share with you a guest blog from Virginia, whom I affectionately like to call V. Please enjoy. You can follow the link at the bottom if you want to donate to her teespring campaign. I actually placed an order for a shirt and would really like to actually have it, so if she sells 50, I will get my wish. Help me get my wish! Help V get help, too. Much love to you all, Chemosabi



My Story
By Virginia Miller

When I was 13yrs old my mom became pregnant with her 6th child. I was too young to remember any of her other pregnancies, so it was quite a surprise to me to see her little frame get taken over by her basket ball shaped belly, I watched in disgust as her belly button literally expanded and disappeared under the force of her ever growing abdomen. When my mother was far enough along for the baby's movement to be seen outside of her stomach I was horrified...it was pretty ghastly to my young, unworldly eyes....abhorred, I swore to my mother I was NEVER getting pregnant or having any kids. While everyone else ran to feel my baby sisters movement, I retreated to me room overcome with feelings of nausea and disdain. 

When my little sister was finally born, I fell instantly in love with her. We were inseparable and as she grew, so did my internal need for a child of my own. Before I knew it, I wanted a baby more than anything. I managed to have two beautiful daughters, but after 6yrs of trying for a third child, I realized, and soon accepted, that two was all I was going to get. I really wanted a son, more importantly, I knew my husband and my oldest daughter wanted me to have a son more than anything. Both my husband and I were told separately that we could no longer have children, at one point, they even thought I was going into early menopause in my late 20's. 12yrs passed, my daughters were 12 and 14yrs old, they no longer asked for toys on birthday and Christmas lists, they wanted cellphones and video games instead. They were well past the age of kisses and hugs or any public affection what so ever, my babies weren't babies anymore. Every time I walked past the toy department in our local store or saw a young mother with her newborn baby in her arms, my heart ached.

The month that I turned 32yrs old we signed the contract on our first home, it was a repossession and no one had lived in it for over a year, so to be safe we decided to bomb it for bugs, while setting one of the bombs off I accidental got a mouthful of the smoggy poison..I was nauseous for days. I never thought much of it until one day at work someone accidentally hit me in the stomach with a box...I felt the protective firmness instantly. A mother never forgets what that feels like. I knew I was pregnant.

My third daughter was born 8 months later. When she was about a year old my husband and I decided to throw caution to the wind, she needed a sibling closer to her age to grow up with, deep down I didn't believe it was possible, so imagine my surprise when 6 months later  I was staring down at a very positive pregnancy test....

I counted down the minutes to the end of my first trimester, the nausea was unbearable, usually it subsided in my second trimester. For the most part everything seemed normal, I had some brown spotting at about 6-9wks, but my doctor told me brown and light pink blood was fine, it was just my cervix stretching, no big deal. I look back now at all the signs and I wonder, why wasn't it caught?, why on my endless days of research on google did my symptoms not lead me to the answer I later found when it was too late? There was even one day when I thought I passed a small blood clot, I know now that it was actually a grape like tumor. All the signs were there....why didn't anyone catch them?

I was diagnosed with a complete molar pregnancy 15wks into my pregnancy, my symptoms were prominent at 6wks. The only reason the Molar was even caught was because I persistently went to the ER twice in one day and demanded something be done. I was reassured the bleeding was normal and sent home both times, luckily though, the second time the doctor on call decided to have me schedule an ultrasound the very next morning.

There's nothing like a ultrasound technician telling you, "I'm sorry, but there's no baby". No baby? What do you mean there's no baby?...she quickly left the room to get her supervisor while I contemplated the words "no baby"... Her supervisor swooped in annoyed at the tech for bothering her, she demanded I get back on the table and she roughly examined my "no baby"... I kept thinking she was going to find it and yell at the young tech for scaring me. She didn't. In a flood of heartless words I heard: molar pregnancy, surgery, tumors, cancer, blah, blah, blah... I shut down after that. I don't know what else she said, I didn't notice when she left the room, I barely moved when I was asked to go out into the waiting room with all the pregnant mommies while my husband and I awaited the surgeon to come and get me for a consultation, I didn't hear anything the surgeon said either. All I knew is I was having surgery in two days to remove my "no baby"...

6wks after my initial surgery I was taken into a conference room smaller then my laundry room and told that I had an extremely aggressive form of cancer, I'd contracted it from what I knew now was a complete molar pregnancy. It was caught too late, the tumors had embedded into the lining of my uterine wall, I was diagnosed with an invasive persistent mole, in cancer terms, gestational trophoblastic disease. My oncologist gave an order for me to have a PICC line placed in my arm and a single agent chemo administered to me on the very same day. Over a two month period I had constant problems with my PICC line, after it finally ended up giving me a massive blood clot in my right jugular vein, it was pulled and I was sent to have a port placed in my chest. Thanks to the blood clot I was also put on anticoagulant therapy, I had to give myself a shot in the stomach twice a day for 6months. 

After 10wks on ActD (single agent chemo), my tumor marker began to rise again and so I was taken off the ActD and placed on a stronger regimen of chemo called methotrexate. 6wks later that stopped working too. I've had a multitude of tests, I've been stabbed with a needle over 200 times, weekly, bi weekly and monthly blood draws, 5 CAT scans, 2 MRI's, 1 vascular ultrasound, 2 internal and external ultrasounds, 3-4 chest x-rays, two surgeries, 3 PICC lines, 3 visits to the emergency room, 6 months of anticoagulant therapy, 4 pelvic exams, 16wks of chemo and 1yr, 4 months and 24 days later, I'm still not cured....

Quiescent trophoblastic disease. In a nutshell, my cancer is in a semi dormant phase and has become chemo resistant. There's very little known about molar pregnancies, so you can believe me when I tell you that there is next to nothing known about the oddities that branch off of a molar pregnancy. My oncologist doesn't know what else to do, he wants to send me to a specialist in Chicago so I can have some testing done that they don't offer in other hospitals in my area. My insurance doesn't cover these tests, so I'll have to pay out of pocket for them, but I don't have much of a choice at this point, I refuse to lie down and die like a dog. If I'm going, I'm going to go fighting. 

I tell you my story today, because had there been more awareness for this disease, I wouldn't be where I am today. This was COMPLETELY preventable. We need to spread awareness, we need to scream it from the roof tops, it could mean the difference between a light surgery and where I am today. It could mean the difference between life or death for someone. I am asking for donations because I am fighting for my life. I'm asking that you reach out and help me get the tests I need to fight a cancer that is robbing my life. I would prefer that you buy a t shirt rather then just donate the money because at least then you've given this disease a voice, people will see the shirts and you will be spreading awareness. I only get a portion of the proceeds, but it's still worth it to save someone from being where I am today. Any donations are welcome though. 

I want to thank Kathleen for asking me to do a blogspot on here, she is a gifted writer and I'm blessed to have been asked to contribute in any way to her site. I met her and 3 of my other molar sisters in a support group created by Jennifer Gilbreath called Mymolarpregnancy.com.....they've all really been a really amazing support system for me, I don't know what I'd do without them.


Here is the link to the teespring campaign: http://teespring.com/spreadmolarpregnancyawareness
Here is a link to her page for donations: http://www.gofundme.com/aj4ix4

Friday, May 30, 2014

The Selfie Project Just Got Real

BOOM.



So, I kind of left you guys high and dry on the selfie project. Turns out, I'm not the narcissist I thought I was. I know, its hard to imagine when I have an entire blog, JUST about me. But, I was feeling kind of self conscious about the lack of hair, the strange style, and the left over puffiness from chemo and 'roids. My hair has grown out a lot and the pic above was the first day I really felt like I did before I lost my hair. As if it weren't just a bad haircut or that I was a cancer patient. More like I was some brave, pixie cutted hottie. I felt fantastic. So, there must be a little bit of egomania in there. 

I feel better, but still out of sorts in a way. I think it might be emotional and not physical. In many ways, having cancer is a lot easier than NOT having it. When you have cancer, everyone is watching you, waiting. I have developed a recurring nightmare where the cancer comes back or I get secondary cancer. I would like to say it means nothing, but I wake up terrified, in a cold sweat. 

I feel compelled to talk a little bit more about the piece I wrote for Women's Health. It has really got me thinking about strength, character, and what we are made of. Before I had cancer, no one told me I was strong. In fairness, my life was not what I would have called difficult. In fact, I was probably due for a few challenges. I think God or the Universe got kind of confused and decided to hit me with it all at once, but I was always ok with it being that way. I had my chemo and my main man Dr. Sehbai. I was scared and lost sometimes, but I wasn't really afraid the cancer would win. I had my family and my boy to live for, and I was young, and the cure rate was high, so why would I be concerned? 

People seem to have this idea of me that I am some kind of superwoman. Like I said, this has really stirred up the feelings and thoughts inside of me. I think I have touched on this in posts in the past, reiterating that I don't think I'm strong, and even asking for help and support at times. Not that this makes you weak. I'm getting off track here, but listen. I am nothing without you. To the ones in the trenches, even the ones I never saw: the pathologists and phlebotomists, the nurses and volunteers and of course Dr. Sehbai, holding my hand, cheering me on, and picking me up when I went splat on the ground, cause there were a few of those days, too. To my family and friends and the countless blog readers and followers on social media, to the complete strangers from the What To Expect forums who made me feel like family and acted as my own personal pep squad. To the women on my support group who became like sisters to me. You need to know that you are my strength. You are what made this possible, as illogical as that sounds. 

When I was down, you lifted me up. You sent me custom ice cream and mini pom poms and Lush treats and cards, some of you, a card every week (here's to you, my beautiful survivor friend, Laura.) You visited and called and told me I was beautiful when I had a horrible bald head with zits all over it and a puffy face from steroids. 

I am humbled by your strength. Without you, I really would be nothing. Thank you. 

Stay tuned for an epic Jack update this week. 









I'm Totally, Like, Published!

Check out my article in Women's Health!

http://www.womenshealthmag.com/health/pregnancy-and-cancer-story

Sunday, January 19, 2014

My Benefit

So, some really cool people got together and decided to throw my family a benefit, to help with some of the costs we incurred when I was sick....


I mean, I personally may have chosen a different photo, perhaps...... 

Buuuut, whatever, beggars can't be choosers. 




Muh ha ha ha ha ha ha ha. Thanks to everyone who has helped. There's more info on Facebook, or you can contact Jay or Russell if you want more info on how to help. So much gratitude and love for the fantastic people in my life. 

Saturday, January 18, 2014

Selfie

Here's one I just HAD to share. Its not actually from the selfie project, but its fun.

Friday, January 17, 2014

The Selfie Project

I've been working on a selfie project. I know, I know, selfies are soooo 2013. It's partially inspired by a pin I saw on Pinterest.... but the link was to a spam site, so I don't want to link it here. Here is an image, though:

I guess the concept is that you take this pic yearly, and see how much you change. I like it. So, it got me thinking about my physical appearance. It is going to change so much, just as my hair grows. I tried to document my journey as much as possible, but I'm learning that I am sort of lacking in photos of myself. The other day, I was discussing with Jim that I am, for the first time, starting to look like myself again. I said to him that I never would have thought that cancer would have such a profound impact on my physical appearance. I became a person I actually did not recognize when I looked in the mirror, and thats not a metaphor. I knew I would lose my hair, but I did not anticipate not knowing myself. So, things are changing now. My hair is growing... See pic below. 

I'm starting to feel energized enough to accessorize and put makeup on every day, and I have even started with the earrings again. Those of you who knew me before all of this remember my fantastic earring collection, but for those of you who didn't, I have a pretty bad ass stash. So wearing those is part of it.  

Another inspiration for my project was this adorakable text I got from my dad the other day, "Katy, what is a selfy?"

I had to explain selfies to him and I learned that the Oxford Dictionary named it the word of the year in 2013! 

http://www.cnn.com/2013/11/19/living/selfie-word-of-the-year/ 

He then sent me the best/cutest/sweetest selfie I have ever seen. I think it is saved on my phone, but can't find it right now. I promise I will update and post later. 


Nice face, right? I took these pics just for you guys, in real time, so you can see what I look like when I blog. I'm actually sitting at my breakfast nook. It's my day off today, so Jim and I are having coffee, and Jack is playing with some pots and pans near our feet. I have also been working on some visual art, so thats part of neglecting you guys over here. 

Also, I talked to Dr. Sehbai yesterday.... We had gotten results of Jack's hCg, and it came back <0.6, which is very good, not detectable in any way. All of his other bloodwork was normal as well. His liver functions have improved and are now normal. So I let my main man know, forgetting that he is on a trip to Pakistan and Mecca. He sent me this amazing photograph, and such a nice message: 

His message said "this is the most sacred place in earth for us and I will pray for your well being and your family well being take care."

Let's hear it... awwwwwwwwhhhhhh. I love him! Please take a moment today to hold Dr. Sehbai in your heart and hope, or pray, if that is your thing, for his safe return. He's important to a lot of people! 

Jim and I are doing a few little projects around the house today, so I am going to get back to that. Have a good day kittens! 

Thursday, January 9, 2014

Hey, Arnold!

A few weeks ago, the news of Jen Arnold, of TLC's series "The Little Couple," having choriocarcinoma, broke. It really was the strangest thing, because first, they released that she had "a rare form of cancer," well, thats not too uncommon. It seems, these days, that "rare cancer," is a term you hear a lot. So, I saw it, and I immediately began scouring the web. You might not believe this, but I had the strangest feeling that she had what I had. So, I searched and searched about her pregnancies. Of course, at the time, I wasn't thinking in terms of her having possibly had a miscarriage. I was thinking of her being exactly like me, so I googled the heck out of it, then kind of forgot about it. I figured it was breast cancer... just like everybody I ever talked to about my own cancer figured about me.

About two weeks later, People magazine broke the story that she is battling Stage III Choriocarcinoma. AKA exactly what I have/had. I could not believe it! My heart goes out to you, Jen.  The headline reads: "A New Mom's Fight to Live." I picked up a copy while grocery shopping, and took it home. I left it on the counter, because I had worked late and got busy picking Jack up from his grandparents, preparing dinner, you know. The usual. The next day, while preparing my morning cuppa joe, my gaze fell on that headline. I welled up with tears, and was overcome with emotion. That is such a loaded headline. A New Mom's Fight to Live. That is such a direct, heart breaking, gut wrenching, accurate account of what she is going through. What I went through.

I have mentioned in other blogs that, during the cancer, I was extremely single minded and focused. It was only after I had won the battle that I really understood the emotional toll of the war. There are simply no words for what I feel for you and your family, Jen. When you described laying on the couch, but being in the living room, so you could see things and witness them, I felt like your soul sister. You were being quoted for everything I felt, exactly the same. EMA/CO is an extremely challenging and toxic regimen, and I cannot even imagine being in your shoes, dealing with the rarity of your form of dwarfism, with it's own set of challenges to treatment.

I wanted to reach out and put my feelings out there, and let you know that my family and friends and followers on this blog are all pulling for you. I wish that I could hug you, or bring you some cookies. I know you have millions of fans and so many people praying for you and sending you that good juju, but I just wanted you to know that I'm thinking of you too.