The Quiet Life of Violet

New News

Hi guys!

Big news today.

Nope, it's not a baby. Sorry!

It's something equally as amazing and life changing... Next Monday, April 30th, I will be going to the hospital in Oakland for part 1 of 2 in Project: Violet Walks Again.

                   
     When I was younger, I used to wear a prosthetic leg and walk around like you and he and she. Dustin didn't even know that I had a "fake leg" until I told him, and he thought that I was joking at first. I wore a fake leg from the time that my leg was amputated in November of 1995 until right after my first dose of my second go-around with chemo in 2005. After my treatment, my body was too swollen, so I kept it off most of the time. After I healed from my lung removal in August of that year and finished chemo in April of the next, I wore my leg again. The fit was terrible, but I toughed it out for the next few years and eventually needed to use a crutch as a support.  I was in constant pain and despite many (half-assed?) attempts on my prosthesis' part, the comfort never came back. The end of my limb where the surgeon had removed the lower part of my leg had grown long over the years. Like most people, how tall you were at age 11 is much different from where you stand at age 25. After the cancer came back for the third time in 2008 and I eventually overcame that terrible time in my life, I said "screw it," and just decided to use a wheelchair. I was alive and was comfortable being in a wheelchair, both mentally and physically. I once had a guy say that he didn't know that chicks in wheelchairs could be hot until he met me. Boo-yeah!

    I put the idea of getting surgery out of my mind, despite many attempts of persuasion by a few of those around me. It wasn't worth the risk of dying on the table just to walk. I was okay with being in a wheelchair for the rest of my life and even liked how... truthful it felt going out into public obviously missing a leg. Obviously handicapped and in a wheelchair. There was no staring with looks of "why is she limping?" or "What's wrong with her?" It's easy. You see I'm in a chair, look at my legs, notice one of them is missing and then look away quickly before I notice that you're staring at me. I always notice. It doesn't bother me, though. I like displaying my truth.

    Well, after the many pushy "Just get a leg," "Just have the surgery," and "Don't be so selfish - do it for your baby," comments were stifled with teary explosions, I had some quiet. Some peace in my head. No longer did I turn my head against the thought of surgery (because I'm stubborn and don't like having anything pushed on me over and over again). I was free to do my own thinking. Make my own choice. Own the decision. And I did. I made the decision to walk again and it was 100% mine. I am doing it for nobody but myself and  my child(ren), but I know that Roman and any future babies we have would love me even I had no legs and HAD to be in a wheelchair. This is mine and I've been feeling very empowered and proud of myself lately.

    I've been going to doctor appointments, making plans about my future prosthetic leg and talking with surgeons for a little over  two months now and we have a plan.

    I have two things that need attention in order for me to walk again. The first is a medium sized Osteochondroma, which is a fancy name for a NON-CANCEROUS bone tumor that people  sometimes develop towards the end of long bones. Well, I've had one on my upper fibula ever since I was 11 or so. At first,  my pediatric oncologist feared that it was the cancer growing in another spot, but after the scans and fear, it was determined to be harmless. Well, this awesome tumor (hey, anything that's not cancer is awesome!) effects the way that my prosthetic leg will fit since it sits right below my butt-cheek and gets in the way of my weight bearing, leg-wearing bone, the ischium. Plus, it hurts when it rains and gives me little nerve zaps if I sit on ground that's too hard (prosthetic legs are made of rigid material, so my "leg bump," as we call it, needs to go). Plus there is a tiny, less-than-one-percent chance that it could eventually turn into a cancerous tumor, so yeah. It has to go. I won't take any chances with THAT crap again.

     The second surgery, which will take place around one month after the first, will be to shorten my little leg. As it stands (har har har, no pun intended), the tip of my limb looks a bit like the tip of your elbow. Skin over pointy bone. In the prosthetic leg wearing world, that is no bueno. Can you imagine having lots of feeling in your elbow and then having to squish it down in a socket (see the picture above, to the right) and put all your body weight on it? It hurts like a mother effer. Constant, stress inducing, blood-pressure raising, make-your-heart-beat-fast-from-the-pain pain.

 

    There is more to it than happiness and dreams of walking, though.  This will be the first surgery that I've ever had that wasn't pressing. Wasn't needed to save my life. With these two surgeries, I am risking my life. Risking everything that I've fought so hard to attain. Everything that I hold important and love with all of my soul. Some sick little voice in my head says that if something bad were to happen to me while under then knife, how ironic my death would be. After fighting so long and so hard for a normal life, I'd lose it all in the name of something so luxurious as walking.

 

    I need your help, sweet friends. Send me courage and hope and thoughts of safe surgery. Pray (if you do) for my safety and my Husband who will be waiting in the waiting room for me. Pray for Roman. Oh sweet friends, pray for Roman. I can't even form the words with my finger tips, can't capture what I'm feeling. My sweet boy. He needs his Momma. He needs me. I need to wake up from this surgery and be there for him. See him turn one and see him walk. I need to bring Miss C. (our girl, if we get pregnant with one!) into this world.

I'm so scared and so excited, guys. I'm full of hope and plans and dreams and pure fear. I need you guys behind me. Hold my hand, will you? Pretty please?

With so much love,

 

 

Being Both Handicapped and a Mother

After spending most of my life in the world of cancer, this little boy was meant to bring a sense of normalcy.  And while he has in so many ways (hello nighttime pee-pee diapers!), having a growing child has really brought to light the little things that I am unable to do because I have one leg and use a wheelchair.

[photo by LA]

In 1995, I had my leg amputated above the knee (as part of my cancer treatment).

[1995. Christmas picture with my cute siblings and Inky, the chihuahua.]

I actually had a procedure done called a Limb Salvage, which is where they take out the cancerous bone (while preserving the muscle, foot, knee, etc..) and replace it with a metal rod. My body rejected it and the amputation was inevitable. I'm sure the last thing on my parent's mind was weather or not an amputation would hinder my abilities as a mother. In fact, it's a blazing miracle that I'm still alive and we don't that for granted at all.

As a teenager, I wore a prosthetic leg and walked around like you or anyone else.

[Homecoming, 2002.]

I was embarrassed (dreadfully embarrassed in fact) about it,  and hid behind pants everyday. Actually, Dustin didn't even know that I had a fake leg until I told him that fateful day in study hall. Although I was able to walk, it was pretty uncomfortable and I can still recall the stress and pain that wearing a prosthetic presented. The socket that was molded to fit the bit of leg I had left, was plastic and was held on by a suction valve. Plastic, obviously, didn't allow for much in the way of  "breathing", so my leg was constantly hot and sweating, and if you're a parent, you know what wetness inside of plastic leads to - heat rash and sores. I used to get the worse abrasion where the socket would rub with each step. Some days I would be so swollen and sore that my leg wouldn't fit and I refused to go to school without my leg on (in a wheelchair or with crutches), so I had to stay home from school. I won't even get into the whole water retention/ being a female thing. You get the drift, though, I'm sure. 

Fast forward to 2005 when my cancer came back and claimed my right lung.

[After my lung removal surgery. Stanford Hospital, 2005.]

With that being such a huge surgery and the seven rounds of chemo that followed, the whole losing and gaining weight problem resurfaced, so, much of that time I went "without my leg." After healing and finishing my rounds and such, we went back to living our normal life - school, work, being married.

[Disneyland, 2009.]

Fast forward again to the summer of 2008 when my cancer came back again, not once but twice. I had CyberKnife therapy at UCSF and when they discovered the tumor in my tummy, I had a huge procedure called a Whipple.

[In San Fransisco after a Cyberknife treatment.]

While I didn't have to get any chemo this time (the doctors concluded that chemo doesn't really work long-term in my body and they wouldn't do it again), the Whipple messed up my digestive system a lot, which  caused me to lose a lot of weight fast, leaving me with a socket that was too big and a "little leg" (we also call it Bean...yeah, my little  amputated leg has a name.) that was nothing but bone on the bottom.

[Fonzie is sitting right infront of Beam, but you get the idea with how scrawny I became. Halloween, 2008.]

To get an idea of what it was like, bend your arm and feel your elbow, that's what the bottom of my leg is like, only it's MUCH more sensitive. Now, try walking on that. After talking with a doctor, the only way to "fix" it was to have another surgery where they would cut me open, "shave" down my bone and wrap some muscle around the bottom of the bone for "cushion". Yikes! Just like any surgery, there are pros and cons, and the biggest con, of course, is death. So, I chose not to do it.

Fast forward to today, with me and Bubby and Squiddy together - my sweet little family.

[Total picture re-post, I know... but, but.. it's one of my favorites!]

We rent a smaller 2 bedroom, one bathroom house in the Richmond Hills area of the San Francisco Bay Area. While we love this house - the location and proximity to the things that are spot on with our lifestyle, the layout, the view and our old, crazy neighbors - it isn't 100% handicap accessible. I can BARELY get my chair into the tiny bathroom and more often than not, end up hopping. This is not ideal when I'm trying to bathe the baby! I am not able to kneel on floor when bathing the Squid, so bath time = backache for me.

I've gotten very good at wheeling myself around with Squid in my arm(s).

[Doesn't he look happy?! We were working on sitting up using our neck muscles and I slapped that hat on him to take pictures. It pissed him off - already not able to multi-task like his Daddy! Tee hee!]

I take it slow and am always steadying myself  before I make a move which might end badly if I were to topple over. I've almost perfected the whole "nursing the baby with one arm while rolling down the hall" thing. In fact, Roman likes to sit facing outwards on my lap, saddling my thigh as I toodle about the house.  As far as sleep goes, we keep a bassinet next to my side of the bed and he sleeps in our room, so nighttime changings and feedings are done without having to leave bed. He naps in there during the day and sometimes in his crib in his room. His changing table and crib are right next to each other so all I have to do is pivot and turn to take him from one to the other. 

Our house is one level (thank heaven!) which is the only way possible for a mostly functional life on my part. I can get into all the door ways while in my chair, but it's cramped. We are SO blessed to have found a rental where the (tiny!) garage is level with the house, so I'm able to roll out there and do the laundry by myself. The garage is tiny, though, so I'm not really able to maneuver around  the car without moving it, which is a huge hassle to have to do every time.  The ONLY other way to get outside is through the front door, which has a step down, so I'm not able to just "go outside" in my wheelchair. I use crutches sometimes, but I definitely can't hold the baby and crutch outside.  Squid LOVES being out doors, and as of late, he hates all of his carriers (Ergo, Bjorn, Panda Pouch and his sling), so taking him outside is HUGE production for me. I tried hopping once (OMG.. I know) while holding him to get to the front patio chairs, but I decided that it was a bad (BAD) idea to wobble on one leg while using my arms to hold an infant, my precious boy. To get to the (rocky, gopher-town, spidery grass-ed) backyard, I have to go out the garage and down a flight of about five stairs, which is not really do-able for me. It's hard because some days I really feel kind of trapped in the house, and while I CAN strap Squid into his carseat and drive somewhere, it's not the same as being able to just pop outside for a walk on a whim.

About driving... I am able to drive almost any automatic car out there - I just use my left (and only) foot like a bi-ped uses his or her right foot. In order to take Squid out by myself here's the rundown: I load him up in his boat of a carseat, lift the boat while in my chair and scoot out into the garage using my foot to propel myself. I scoot up next to the car door and set his seat down, open the door, use my buff one leg to lift his cow of a seat into the car and buckle him in. I wheel myself back to the door that connects our kitchen to the garage and put the breaks on the chair. I then hop to my side of the car with what ever bags I'm taking with me. Thankfully we have an automatic garage door, so I just pop the door open with the remote and drive on to where ever we're off to. Once I get where I'm going, I usually am lucky enough to get a good handicapped spot up front (perk of having one leg!). I shut the car off, hop to the back of the car and pull my (heavy!) wheel chair out of the back of our car. If I'm using a baby carrier, I will then put it on and take Squid out of his carseat and snuggle him in. If I'm using his stroller, I'll get his stroller out (while balancing!) and then unbuckle his carseat and snap it into the frame of the stroller. I can push him around, even though it's a bit tough. I use one hand to push and steer his stroller and one hand and my foot to propel myself in my wheelchair. Uphill and down hill areas suck. I haven't taken him out much by myself because life with a newborn is complicated enough and I'm afraid of having a screaming baby in the middle of a store that will take forever for me to get out of.

I had a friend ask what the hardest thing about being a handicapped Mother is, and I'd have to say that it's not being able to just get up and walk with him from point A to point B. There is no soothing him by walking out front and letting him feel the sun on his skin. There are no quick trips anywhere or walks down the street. No full body dancing and bopping to get him to calm down. And even though I know that he won't know that I'm different than most mothers until he's much older, I know that  it's coming. I have no idea what the next year will hold for me as a Mother as far as the effects of my mobility goes, but I do know three things:

1) I am lucky to have as much mobility as I do. Some people have even less and I know that it's got to be even harder on them than what I'm experiencing.

2) He loves me no matter what. He loves me even though I only have five toes and he'd love me if I had 50. Bubby does, too and for that, I am eternally thankful.

3) I'm prepared, at least a little. I got this for the next step in HIS mobility. Yes, I bought a kid leash, don't judge! Ha.

Hope you got something out of that! Have any questions? I love questions!

xo,
Violet

 

The Cycle and Life

Yesterday my distant cousin passed away. She was 22 years old and beautiful. Her life was ripe and her future bright, yet, for some reason, she was meant for earth no longer.

She also had the SAME exact cancer that I've struggled with. Osteosarcoma, or bone cancer.

Her story was a little different than mine in that her cancer metastasized (tumors that pop up in addition to the "big" tumor) in more spots than mine had ever had, and she was a bit older than I was the first time she was diagnosed. They say the longer it takes between recurrence (hers came back once after the initial diagnosis), the better the prognosis, or survival outcome. Her cancer came back a year after the first find - mine was ten years, then two years. I've had cancer four times and am still living. She had it twice and is no longer on Earth.

My heart doesn't understand why things work like this.. why some live and some die so young. My heart hurts as I type this and Dustin and Roman's beautiful faces peek at me via the picture on my desktop.. She won't have that. She will never have have a baby. She will never be pregnant or married or a Mother, and those realities have bruised a piece of my soul so deeply.

I am lucky.
I am so damn lucky.

I am scared.
I want to be this little boy's mother for the next 50 years.
I don't want cancer to take that away from me.

I am thankful.
Every little sneeze, farty fist clench, scream inducing bath and calm 3 a.m.feeding, all of it is a total gift from God. I am eternally grateful for what I've been blessed with. 

...I just don't want it to go away.

Please God, please let me be this boy's Momma and this man's Wife for the next 50 years.

Just A Little

My amazing Doula, Michelle, came over last night for our 2nd to last appointment before Squid comes. I thought it was the last, but she's going to come over again once more a few days before my due date, if I make it that far.

With Squid's small size, my Doctor, Dr. J., has had me doing these Non Stress Tests (NSTs) twice weekly to make sure that his heart is okay and that he's responding like a healthy baby should. To date, he has passed everyone of the NSTs with flying colors. He's a champ already

                                                            [At Monday's NST]

Why the continued NSTs, you're  asking?  They are worried that he's not growing "big enough", according to averages, for one of four reasons:

1) There's something genetically wrong with him. (Which we've pretty much ruled out)

2) My body isn't good at absorbing what I'm eating due to my Whipple Procedure, and Squid isn't getting all that he needs from me, hence the small size. (Which is possible)

3) There is something wrong with my placenta or his cord, which is preventing him from getting what he needs even though my body IS able to provide it (oxygen, nutrients, etc). (Which, according to the cord scans, is not the case)

4) He's just a small baby. Some small Moms have small babies. (What we're hoping for)

[Big for me, but pretty small for 37.5 weeks!]  

I asked Dr. J. what he though the birth might go like and he gave me two scenarios:

1) If Squid still isn't growing "enough" when I get an ultrasound next Thursday, he will schedule me for a c-section a.s.a.p.

2) If Squid IS growing, I'll keep going to the twice weekly NSTs and Dr. J. will induce me at 39 weeks.

In talking with Michelle last night, we went over all three situations: natural labor, c-section and being induced.

I really, REALLY want it to happen naturally. I don't want to have surgery. I've had my fair share of being cut into, anaesthesia, I.V.s, mask covered nurses, iodine covered body parts and staples. It makes me anxious just thinking about it. I'm a planner, I like to know how things will go.

Being induced almost guarantees that I'll need an epidural, an I.V. and will be stuck to the bed with a NST machine on my belly the whole time. The contractions are sudden and strong, not gradual like natural labor, and the pain can be relentless. With inductions usually comes narcotic pain relievers which can (and do) effect both me the baby. This is often a slippery slope that leads into a C-section, so we're back to the surgery route.

I don't want to be a patient, attached to an I.V., with a blood pressure cuff suffocating my arm. I don't want to be tethered to a bed, with an ugly gown, the machines beeping. I really DON'T want that. It makes my heart hurt just thinking about it. It reminds me of being bald and being pumped with chemo drugs and feeling like a caged animal.

[2005. My self proclaimed "glow worm" phase.]

Of course, that's the selfish, slightly traumatized side of me, and I want you all to know that I will do whatever needs to be done to get this baby into the world safe and sound. I would fillet a bunny if it meant that he'd be born all right. I'd join the circus or tattoo monkey butts all over my body. I'd eat nothing but peas for a year or clip Dustin's toenails with my teeth. I'd give away our car or never wear makeup again or shave my head for the rest of my life if it meant that he'd be okay. I will face my fears and allow myself to be cut into and stapled up and poked with needles and drugged all for him. It's all for him.

I'm just a little scared.

(1 + 1 = 3) A Shower of Emotions

----

It was nice being around so many women who loved me and this little boy growing in my tummy. The decorations were beautiful, the food was tasty and the gifts blew my mind. At the same time, it kind of felt like I was watching from the outside in. The pretty hair on my head (done by my amazing friend Jewels) and the dress on my body were on some other woman. Watching my family and friends sip tea, eat scones and chat with the women who sat next to them, I almost felt as if I were there for a nameless guest of honor. When I was opening gift after gift, each wrapped with so much care, it felt like I was watching someone else do it. Like the books and outfits and diapers were for another boy named Roman, not MY Roman. How could I be here, be experiencing this beautiful moment that I had dreamt about for so long? It was like I was almost going in and out of consciousness -- one moment I was there and it was MY shower for MY son and the next I was just looking in.

I had a talk with my Sister afterwards and expressed what I was feeling. Effie always seems to snap me back into to reality, as she's very much about, "Your life is NOW. Let yourself enjoy it and try not to let your fear hold you back." It's really difficult to totally open my heart and let myself really get excited about the things that matter the most to me -- I have this nagging fear that if I let my heart fill to the brim with joy, happiness and satisfaction, something horrible will happen and it will all be taken away.

Is it really possible that God's decided that after everything I've survived, all the cancer, the surgery, the tears and heart break, that I'm allowed  to stay alive long enough to give life to this baby? Will I really be able to hold a human being that has equal parts of me and the person that I love the most in the world?  To smell his sweet baby head and tickle his big (Dustin style) spatula feet? Is it really true that I'll be allowed to see his first steps and hear him call me Momma and maybe even go to Kindergarten?

How did I ever get so lucky?!

 

Leigh-Ann and I are off to go see Lori, have Thai food and then off to see The Squid and make sure that he's growing!
If my belly is any indication, I'll say that he's doing just fine. Wish us luck!

----

P.S. - Guess who won?  Eeeeppppp!!!!

Hope, Fear and The Son

----

This pregnancy, so far, has been hard on me in more than just the "normal" aches and pains way. It's brought light to many different things about being a Mother that I hadn't thought about before.

Roman will eventually learn that his mom is different.

• I hope that he won't be angry with me for being different. 

• I hope that we can raise him to be compassionate and understanding and the other kids won't tease him because his mommy has one leg and is in a wheelchair. Also, that his Mommy has scars and is missing a lung and is constantly wheezy and asthmatic.

• I hope it doesn't bother him that Momma won't be able to chase him around the park like other Moms do or that he won't be embarrassed when I park in a handicapped spot.

• I hope he digs my wheelchair. Free rides!

• I hope I never run over his toes.

• I hope he never catches my fear of the cancer that may someday decided to re-populate my body.

• I hope he never understands the anxiety that rushes through me each time I have a scan.

• I hope he never knows how sad it makes my soul to know that I could be gone before he is in Kindergarten.

• I hope there never comes a point where Bubby and I have to sit him down and explain that Mommy is sick and will be going to live with God.

• I hope I won't beat myself up when he needs help with his homework and I have no clue how to do it.

• I hope I can teach him how to drive (Yup, I drive an automatic with my left foot!).

• I hope I get to hold his hand when some little strumpet breaks his heart for the first time.

• I hope I get to adjust his tie before he heads out to prom.

• I hope I'm there when he gets married so we can figure out how to do the Mother/Son dance with me in my chair.

• I hope I get to hold my Grandbabies.

 

I  HOPE.

 

 

 

(A vote for hope?)