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

Boston Update YAAAAYYYYY!

hey all!

sorry I have been gone for so long, it's been a very rough few weeks. FIRST: Boston

Boston went very well, we got in on Wednesday night the 6th of July. We took a cab to our hotel room and checked in at the Westin Copley. We were on the 34th floor, gorgeous view! I already knew I was in love with Boston, from just the taxi ride and now the hotel view.

Thursday morning my mom and I woke up and met up with my friend and her daughter for the duck boat tour, which was amazing. (I recommend it to everyone whether you live in/nearby or are just visiting). after the duck tour it was time for my mom and I to head back to the hotel and rest a bit before my big appointment.

We left for Mass General Hospital and took a train (thanks to a friend online, who told me about the exits I knew it was 3 stops!) Alex had been out all day taking the trains and mastering public transit -which we have none of here unless you include busses and light rails which run in squares every 20mins.  We stopped for lunch at this super cute bakery and it was seriously the best sandwich I ever had. (even kept the receipt so I know my order forever so when I go back for treatment lol). after we ate we walked across the street to Mass Gen to the Yawkey building and went to my appointment.

the doctors I met with discussed treatment plans and it was decided right there in the room that I would not have another surgery. My neurological skills right now are fine and it wouldn't and couldn't be guaranteed that another surgery couldn't cause more damage. I am beyond thrilled about this because so far I have had 2 surgeries and while yes they made me walk again and have some use of my right arm, they also caused me more pain.

We left off with the team of doctors would be discussing me at their weekly meeting (on 07.15)  as far as how and when to do radiation. We are still waiting to hear back from the doctors, but hopefully soon.

The next day, Friday the 8th I woke up shivering and shaking uncontrollably. I was so cold for about an hour after waking up and in so much pain. I didn't know if I had done too much from the day before or what. I laid in bed for 4 hours until it was time to get up and go to my appointment with the pain management specialist. Back to the Yawkey building.

I sat in the office feeling  just horrible, but luckily I was at a hospital so I had a wheelchair I could sit in and didn't have to walk. I was also on the cancer floor *maybe the Yawkey building is the whole cancer building?* with a name tag on, it was nice to not be questioned why I was in a wheel chair. We met with the doctor who changed my dosages around and since it was raining took a cab back to the hotel where I went back too bed


Saturday morning early morning I woke up sweating and feeling like my  chest was being hit with an ax. I couldn't breathe and it was nothing like an asthma attack (I have asthma as well -lucky me). I finally fell back asleep and when I woke up I was freezing again. We got a late check out and the hotel let my mom and I borrow a wheelchair so we could go through the hotels indoor shop to the "fancy" mall so I could get the kids some Boston stuff. I hurried and got the perfect gifts for the kids because my mom and I  wanted to go to the library (which was right across the street from our hotel). after 30 mins of getting the gifts (and a new clutch for me) I was too wiped out to do anything but go to the airport.

My FIL has made "that"  person who needs to be at the airport checked in and waiting 3 hours early. So my mom and I arrived at 2pm for a 6:45 flight. ...great. we walk in and I feel like I am about to pass out so I find a sky cab and say I need wheel chair assistance. He's kinda rude, my mom doesn't take it well. I find my own wheel chair and  my mom waits in line to check in and check our bags. She talks with the manager and we get our seats switched to Row 1 Seats window and middle (which is  awesome for me and my mom). now we have a 4 hour wait and I feel like I am dying.

Our flight lands at 9pm Phoenix time, we FINALLY made it home! It took forever for our bags to come. keep in mind I had to wait for a wheelchair and to be pushed down to the  baggage area. After 25mins of waiting my moms bag comes and another 5mins my bag. woohoo time to go. we go outside but it looks like my father (who was picking us up) had to move. stupid sky harbor cops it wasn't busy and he told them his situation! they saw me pushed out in a wheelchair so I hope they knew he wasn't lying. he got us and I thought all was good.

of course we don't even get out of the  airport and someone hits us! WTF?! I just want to get home. I feel like utter crap, just traveled for 8 hours and I need sleep. Cops called, it's agreed that there's no damage done besides my neck hurting more (duh! I have neck problems!! I felt bad for the other guy, last thing you wanna do is hit someone like me in the car!)

Sunday I felt horrible and slept all day long. But I had promised my mom I would go to urgent care. So we made an appt for 4pm. I went and had a temp of 105. They did a chest x-ray and my entire right lung and some of my left lung was full of pneumonia. I was sent straight to thee hospital. It took 3 days for the pneumonia to stop spreading and I slept all day and night until Thursday. On Thursday I was taken for a cat-scan and both lungs were filled with pneumonia. Friday night I was released from the hospital.

It's been a week now and I am just starting to feel better. My son Thane, turned 2 last Sunday (the 17th) and we are having his birthday party tomorrow!  It's been a very crazy  and trying month, I  know it's long and I know it took a while but there's my Boston trip (in a nutshhell) :op

here's hoping for a better august!

xoxo
kayla