new Chordoma page

so for some reason the chordoma website decided to get rid of our community pages and make new ones. It took me a few months but I finally did! this new page however does not show the outstanding job everyone did in raising money on my behalf. so instead of it saying $2000 raised it says $0.  I haven't forgotten those who have been incredibly generous and I wanted to say thank you again for your donations! oh also ALL my "love" is gone too. no comments of encouragement so if you have time please leave me some love and comment on my page!


http://chord.convio.net/site/TR?type=fr_personal&fr_id=1030&px=1013023&post_id=1060&bpg=rlist&pg=personal


xoxo
Kayla

I was hoping to get by without having to get an MRI this pregnancy. unfortunately I began having more symptoms the last few months and now my pain is pretty uncontrollable.  for about 3 or 4 months now every time I stand the top of my feet tingle and hurt almost like they could go numb at any second. I have been having issues with my shoulders, arms and hands going numb which used to happen mainly when I lie on my side but now it's happening in every position I lay in. Also my legs have been going numb from the kneecap down. the other day I was getting out of bed and my right leg just gave out and I couldn't put any weight on it. that freaked me out, since the location of the tumor causes me issues on the right side of my body more than my left. 


I am really hoping that the increase in pain and being unable to control it is a result of the weather changing (it went from hot to cool to blazing hot in a month) and the fact that I have more blood circulation/weight during pregnancy. I don't know how much it would have to do with my weight though since I lost 100lbs before this pregnancy occurred. I've only gained about 17lbs (I was weighed 3 weeks ago). I also hope it's a result that I am not able to take my muscle relaxer or my nerve medication during pregnancy so all the nerve endings are flaring up and angry. 


I have an appt for an MRI next Friday so I guess we will know soon enough. I just hope it's not the tumor changing or growing, I still have about 9 weeks before delivery will be considered safe. 


just sucks so bad being in all this pain, even laying down causes zero relief these days. fuck cancer.


I hope to come back next week (or maybe a week from Monday) with amazing MRI results.  I will keep you all informed!


xoxo
Kayla

why cant Dr. Derek Shepard be real?

In the first episode of the 7th season Seattle grace hospital encountered a patient with a chordoma. If I remember right it was covering most of the thoracic spine. (mine is c3-t4) anyway, in the episode the entire tumor was magically removed and patient was told he would make a full recovery. Of course he had had3 surgeries prior so for it to be removed completely is just...wow. If only life were that easy and like a tv show. Oh how I wish Dr. Shepard was real...or that it was that easy to removed my tumor and guarantee no more pain.

Anyways if you haven't watched greys anatomy I highly recommend it.

Xoxo
K

freak outs

recently, any time I stand up the top of my feet start to tingle and hurt. usually when I lay down my hands and feet instantly go numb. yesterday my right hand in my last 3 fingers were numb/tingly all day. my pain meds are not working as well (I am not taking everything now due to the pregnancy) so I am spending more and more time in bed. that means more and more time away from the kids. that KILLS me. I always feel guilty about it. so on top of my stressing about new symptoms I also have the stress from extreme guilt about not being able to do more for my family.


It's been a couple months since my last scan so I know I will be due for one soon, but the thought of going into an MRI machine is horrible. (I am claustrophobic and can't take any meds for the scan right now) Plus it's easier for me to not know if the tumor is growing but then I freak out when I get new symptoms (like above). it also sucks not being around the kids and they are too young to understand. 


I wish that the tumor was never found some days. I just want a normal life. 


this isn't much of an update as you can see but I have just been feeling more and more upset every day by this and needed to get it out.


thanks for reading


xoxo
Kayla

that girl has it all

I have been told by people that I have it all. In the past and even now. Not by people who really know me but by acquaintances whom I don't want to bother with my issues. Sure on the outside it may look like it, and then a thread on a message board got me thinking. How many people just look like they have it all? How many people are faking it? 


When I go out to a store I drive up in my SUV and people could say or think it's because I want to show off. Truth is I needed something that was easier to get the kids in and out of. Bending down into cars was not easy for my neck. When they see Kim (our nanny) with me and just assume I don't want to take care of my kids, when really it kills me to pay someone else to be a second mom to the people I hold dearest in my heart.  

a lot of people think "I have it all together" or think "I have it all" even. lmao, if they even knew! when dh and I had our son I pretty much just focused on what needed to be done to make sure he was happy and healthy. I didn't have time to eat so I lost all my baby weight in 8 weeks with him. dh would cook dinner when he got home and we all would go to bed. things got easier but then we decided to try for our second baby, had a m/c and I was diagnosed with cancer! we got pregnant right away after the diagnosis and m/c had our daughter. I SAH and watched the 2 kids, a 14mo old and newborn. my son was put in a montessori school twice a week for socialization and because it was hard for me to take care of the 2 kids alone all week. as long as no one was hungry or stinky my job was done. that didn't include me of course, by the time my daughter was 4mo old I was down an extra 60lbs. In march of last year we got a nanny because I physically could not care for my 2 kids. we hired a nanny. I now get to watch another woman help raise my kids, what I wouldn't do to not have to pay someone for memories I would kill to make with my kids myself, while I sit on the sidelines.

from the outside I look like I have it altogether and I look like I have it all.

2012 is off to a great start

hello all! I'm sorry I haven't updated in so long, but I know many can understand how hectic life can get.There was NO CHANGE in my last MRI scan, which I had in November I believe. I should be due for another scan soon but honestly I don't have any new symptoms.  We finally have my pain management routine worked out and most days my pain level is a 3 or 4. Keep in mind where it used to be (constant 9's and 10's) so I feel like a new person.

hope everyone enjoys the big game today :0)

xoxo
K

someone was fired?!?!

ok so I got an update yesterday via my mom. the doctors/team in Boston did not discuss my case at the weekly Chordoma conference on the 14th as we were told they would. it seems I was not put on the list by a certain person (and this was not the first time this person has "forgotten" to put someone on the list for discussion). this person has since been let go. *what a shame* I was however discussed at the weekly conference on the 21st and since I had gotten so sick with pneumonia the team all decided they needed to see my CT scan that was taken while I was in the hospital.

As a reminder my CT scan showed lots of nodules in my lungs so the Chordoma team is interested to see what's going on because Chordoma can spread to the lungs first. My mom sent the disc out on Friday so hopefully they will have it by their next conference this coming Thursday.

that's all the updates I have for now, I see my pulmunologist tomorrow so I will have some more updates about my lungs then, hopefully the pneumonia is starting to clear!

xoxo
kayla