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

2 comments:

  1. Thank you for the story. I am looking forward to donating and to wearing the tshirt in order to educate others. I'm just surprised that it took doctors till 15 weeks to discover there was no heartbeat. Seems to me that the possibility of this condition is a good argument for scheduling the first prenatal appointment at eight months instead of waiting. I will definitely spread the word and educate myself on molar pregnancies. I wish you lots of strength and love

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  2. I appreciate your information on the Blood clot. I wrote about this, too, recently. More specifically about the causes and cure to Blood clot.

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