Independence Day? Ironic.

Me on my scooter at dinner with family
 - my steroids have me so swollen :(

It's the day after Independence Day and  I find it ironic that this is the day that I'm finally putting everything aside and forcing myself to blog. Ironic you ask? Why is that? Well because right now, my life is anything but independent. It's also funny as I observe people, what everyone defines as independence. How easy it is to become so wrapped up in the little things and take for granted everyday tasks that you just do without even thinking about it. I bet you rolled out of bed this morning, walked to the bathroom, jumped in the shower and followed your morning routine like you've done hundreds of times, with your only worry about the hot water running out or what you're going to grab out the door for breakfast, taking for granted that when you very first sat up in bed, before the shower, the breakfast, you could stand. You swung your legs over the side of the bed, pushed up and your body worked without even a thought about it, and those 20 or so feet to the other room that you walked, well one foot in front of the other just worked and there was not a thought in the world that it wouldn't.

My brother and I. I have to admit how much I was totally
against this scooter and now I am so glad I have it.
 I am still embarrassed\to have to use it but
thats my complex I'm trying to get over.
You shoukld see how people look at me in public.

Let me start with an update. Since February I've been battling a spinal cord compression. My breast cancer has torn apart L1 (or was it L3) bones in my spine causing 3 pieces of bone that are pressing down on the nerves not allowing my legs to get any messages to hold body weight, circulate blood properly, or even let my legs move from the hips down in the morning, and gradually from my knees down in the evening as the muscles around the compression get tired. In fact most of the day my legs are so numb from the knee down that I can't feel the floor underneath my feet when I try to stand. I can swing my legs at the knee usually but holding weight or taking steps is another story. Can you imagine how strange it is to have to keep looking down to see what position your feet are in because you can't feel them? I can't tell you how many times I have looked down and seen my ankle completely sideways and twisted on the carpet and to make matters worse I can't just lift my foot and fix it which is your first instinct, I have to use my pants leg to lift the dead weight manually. My brain tells my leg to lift and nothing happens. If I want my leg to move, I have to physically use my pant leg to move them. This compression has pretty much put my entire life on hold, taking me away from work and pretty much the outside world unless it's a doctors appointment or a special trip to Costco or Walmart when someone is feeling generous enough to put up with getting in the car and messing with this scooter I now need to get anywhere.  I was faced with little options on how to fix it, or realistically more been told that there is nothing that can fix it and that I should just accept a life attached to a walker. You can go back a blog post and read about my "options" but I was convinced in the end to choose my oncologists suggestion, let him work on the cancer, give this drug Gabapentin a few months to work on the nerves and see what happens as my body tries to naturally heal itself - so I have been trying to keep myself busy with projects at home while "taking it easy" and allowing my body to naturally heal from both this bone trauma and chemo every 3 weeks. My patience is growing thin, now being 5 months of being "patient" and I've been researching again second opinions and procedures but I won't go into that here - getting back to the here and now, did I mention that was the good old days! I would be happy to be "attached to a walker" but the last month I'm now attached to a motorized scooter.
Here we go back to taking for granted independence. Here are things just in the beginning of June I could do and took completely for granted -bitched the whole time that it took a walker to complete but nonetheless I could do on my own:

• Stand out of bed and walk (with walker) to the bathroom (and go without help)
• Walk out to the kitchen, make my own meals
• Use the walker to walk from the front door to get into the car and out - only using the scooter in stores, malls, movies etc. anywhere that there would be a ton of walking.
• Shower whenever I wanted
• Dress myself

Everyone thought I broke it but that hand has
been atrophied since my neck surgery,
 another thing PT is supposed to help,
 Half the time I only have use of one hand.

Then disaster hit around the middle of June. The first thing? Family came into town and just like when my two best friends came for the week, I ran around like crazy with them (my choice, they tried to slow me down) and knew I would be paying the price of bed rest for a few days but my strength would come back like it did before. Unfortunately, one of the days family was here, I hit a bad place taking my scooter to the car and went flying off of it into the street doing some pretty good bruising to my hand, elbows and knees. I'm truly lucky I didn't break anything. Ok, so now maybe those bed rest for 2 days now turned into 3. Family left, 3 days went by and making it to the kitchen became harder and harder when in fact on day 3 I was so weak that about 5 steps from the dining room table my body gave out and I fell to the floor hard. Thank god my brother was home (and has been continually my life saver these past couple of weeks carrying me - literally - everywhere) to lift me into a chair at the dining room table. As far as I can remember now, this is the turning point where my body lost the last of it's lower body strength.

Elbow bruised pretty good after.
You can see how swollen my face is too

 For the next week I tried and tried to use the walker to do the things I used to do and my legs quickly got worse and worse. It started that I couldn't walk from the table to my room so thinking I was just having a bad couple of nights and healing from the falls, my brother or my mom would wheel me from the table to my room on an old computer chair. Then after making it to the bathroom in the morning, that used all my strength so that I needed to be wheeled from the bathroom to the table on the stool. This whole time I could slide myself on and off the stool, they just needed to roll the chair. This went on for almost a week and one night after dinner I went to slide onto the stool and I couldn't lift my legs off the chair. I rolled my pant leg up and my right leg was double the size of the left and purple as could be. REALLY? I haven't been through enough?? WHAT NOW?
We went to Valley Hospital where I was diagnosed with extensive blood clotting in the right leg and some clotting in my left leg that needed admittance overnight. In the beginning it was going to be treated with Heperin and Coumadin therapy in a Harmon Rehab facility but to spare the details my oncologist was on vacation and his colleague came down to say actually there was a new blood thinner therapy called Levenox that were injections given at home with the supervision of a home health nurse and I just needed to give myself shots twice a day and take it easy until my doc came back.  Apparently with my lack of mobility, having cancer, and the type of chemo I'm on, I was susceptible to blood clots commonly but no one discussed this with me! Now in addition to my weakness anyway, my legs are so tight, swollen and full of fluid, I can't even stand for more than a minute or two. The thinners should keep the blood from forming more clots while my body absorbs the clots that have developed, and when that happens, the doctor "thinks" that the swelling will go away and some strength will return because my legs won't be so heavy and full of fluid, making them easier to move. Ever since I came home from the hospital, not being able to stand, now either my mom or my brother have to literally carry me or lift me to move anywhere. I really feel/am like someone in a wheelchair without any use of my lower body!! Just one example? Let's say I want to shower. I can manage to take my clothes off my upper body but because I cant move from the waist down, someone has to lift me from behind while another person pulls my pants and underwear down, which of course means that everyone in the room has now been subjected to me completely naked, and yes it's family, and yes it's my sister or brother or mom who "has probably seen it all before" but it doesn't change the fact that there goes my privacy, my ability to do something as simple as undress at age 30 alone, the humility of having to be wheeled on a stool into a bathroom, carried onto a shower chair, lifted back out, wheeled back into my room where it literally takes about 40 minutes to get dressed again due to the fact that to keep my feet and legs from swelling twice their size, compression socks and tennis shoes have to be worn all the time, the socks taking about 15 min alone to stretch and pull on my own, putting pants on again means two people again helping, lifting and placing clothes on my bottom half...and then there's going to the bathroom! I can't walk so now I'm forced to use a bedside commode which my mom has to lift me on and off of, in addition to undressing me, and then empties the damn thing which is so embarrassing to have to ask to have done...and those times in the middle of the night when you take for granted you just get up and pee? I have to call out and wake someone in a dead sleep to come lift me out of bed and help. In the morning, after sitting up in bed, getting myself dressed as much as possible etc and I want to leave my room and join everyone in the rest of the house? Yes, I have to call someone to help me get on the stool or scooter in order to just leave my room. I am dependent on someone for every aspect of my life right now and honestly I am having an incredibly hard time holding it together this past week. I don't want to give the impression that I am left waiting on anyone to help me by any means, someone jumps up and helps me the minute I ask for help or a lift or to be carried, it's the fact I have to ask. It's the fact that I can't do it on my own. It's the incredibly frustrating first instinct just to stand up and then remember I can't or feel guilty I'm interrupting everyone elses life by making them stop what they're doing to help me.

Sorry if this is too graphic for some of you but
at this point I'm not too shy and
 I know it satisfies the curiosity
of what my mastectomy surgery ended
 up looking like, well minus the blood thinner bruising,
which is really why I;m sharing it.
 Get your mammograms!! BC sucks!

While we're going into things, the steroid I'm on has my body and my face so incredibly swollen and bloated, not to mention I'll admit I'm guilty of eating my feelings in addition to the starving appetite steroids give you that lately I'm just feeling so INCREDIBLY sick and gross...I can barely bend my neck down to look at the rest of my body, and as such, during a time where I was being helped with a shower, my mom noticed this shocking bruising that covered half my chest, and another spot that covered my lower abdomen. I didn't notice it because I couldn't look down to see my own body. It looked like I was internally bleeding and in a panic I made an appointment with my doctors colleague since he was still on vacation, to make sure I was ok. A CT scan later it was confirmed there is no bleeding but the dose of Levenox was wrong and was cut in half. It will take longer for the clots to go away, anywhere between a month and two months because I'm still in chemo, but it should cut down on this bruising appearing as a side effect.

Bruising in my lower abdomen.
Again sorry if it is too graphic.

Last Wed I finally had an appointment with MY doctor and filled him in on everything going on while he's been gone. He pretty much kept everything the same. Injections of Levenox in the evening and keep an eye on the bruising and don't panic if more develops. He said that no one can say if/when the clots go away and the swelling goes down that the strength will come back or if this is my new normal but not to be afraid of trying to move around - as long as I'm on the blood thinner that there shouldn't be worry that the clots will break free but at the same time not to strain too hard and only do what I can do. Vague enough? We also discussed the steroid again. The last time he tried to wean me off the steroid, I got so weak, I was in this same boat basically, almost having to be carried everywhere and so I asked to go back on my normal dose. Well now that I haven't the strength anyway, he suggested trying to come off of it again explaining that really isn't good for muscles or the body in general and if I would just give it more time for the body to get rid of it, which could take a couple of weeks or a month even after I'm done taking the actual pill, I might find more strength coming back plus the swelling in my face, body and the increased appetite and bloating should decrease too.
Other than that, on a good note, the actual cancer is down to the 70's (30 or below is considered normal as everyone carries some tumor markers in their body) which means the cancer is being killed, chemo is working and hopefully indicating that it isn't doing further damage to my body and allowing it to repair the damage it's already done. I know this is the part where I usually go into how ok, ok thanks for letting me vent. I feel better now and I realize that there are people worse off than me who were born without legs, who don't know what it's even like to walk or run and that I shouldn't take what little or a lot of time I have left being miserable over this, that I need to be appreciative for what I do have. Even though I have to be carried or helped with everything, I get to wake up every morning. Right? Well you know what? Not this blog. Not this time. I am miserable and I am frustrated. I'm tired of putting on that attitude right at the moment and this is not ok. No one person should have to deal with taking so many steps back and it feels like I never, ever, ever catch a break in this whole fight. Just when things start to look alright, I'm finally getting ahead and beating this thing I get knocked so far back, so drastically down it's getting more and more difficult to keep it together.
Deep breath. Now nobody panic. Ya'll know I'll snap out of it. I'm not giving up or saying I'm done fighting. I don't need letters convincing me that I sound like I want to just say screw it and I need to hang in there - it's just been a very very very hard couple of weeks, hell months and I have every intention of still proving every doctor wrong, building my strength back and getting as close to walking again as possible. In fact, I managed to get in the pool yesterday and noticed with the help of the water, I could stand somewhat and walk a little with the help of the weightlessness so maybe the coordination is still there, and it's just my muscles that have atrophied. I have already contacted a PT to see if she had suggestions on an exercise plan without making the compression worse and I've been briefly looking into minimally invasive places like laser spine institutes or going to my dads when the clots clear up to maybe get a second opinion  at UC Davis. I should also mention how thankful I am for everyone around me from those that literally carry me on a daily basis to those that are relieving so much stress by helping with co-pays and car payments to even the little things like the new Snickers Blasts and Starbucks that I have become addicted to - the little surprises you guys think are little things that really are the big things :) I never want blogs like this to come off as unappreciative or that I'm blaming anyone...and now with that I'll finally end this thing.

Let's hope my next update is sooner and includes some positive progress.

P.S/ One of my projects keeping me busy here at home is a new Etsy store for my moms beautiful jewelry company called Neon Skullworks Head over to www.etsy.com/shop/neonskullworks and check it out!