very busy week

another week! I can't believe how fast time goes, but I guess that happens with 2 little ones running around. I had my CT scan earlier this week and received some amazing news. NO CHANGE! If there is anything I love to hear more than "I love you mama" from my kids it's, "No change", from the doctors.

I have just been trying to take it easy and spend as much time with the kids as possible this week. I have been getting back to my passion which is photography, and what better thing is there to photograph than my two loves?!

as far as my pain, it's been increasing a lot but I am trying to push past it. caffeine really helps but then I am up all night long (which is why I am writing this at almost 1am). my doctor and I are working on a new pain med plan to see if we can't get my pain under better control. I haven't been bike riding all week, but I am hoping to go out tomorrow, if I feel better!

talk to ya later

xoxo
kayla

another day!

I got some lab results back yesterday that I was not happy about. Thyroid- out of whack, change meds regroup & retest in 6 weeks. Slightly anemic, hmm probably why I have been feeling so fatigued and could lay in bed all day long. more bad results, I think it's the doctor who doesn't know what she's doing. Time to find a real doctor for a primary care and not some physician assistant.

Since I had no energy and all I could do was lay in bed, today that's what I did. I felt like I couldn't get out of bed. Despite my efforts I was barely able to anything that required more than being out of bed for 2 minutes. Don't know what that's all about but I hope it goes away soon. I am supposed to go on a bike ride with my dad tomorrow morning.

ack I forgot to call and get my prep for my CT scan on Tuesday, can someone remind me on Monday to do that? email me or text me please.

please bear with me, my thoughts are jumbled

my intentions are to keep this blog updated daily but I see that's going to be a bit of a challenge. It seems like nothing is happening and everything is happening all at once. We are still waiting for the doctor in Boston to get back in touch with us but for now my neurologist has decided to move my CT scan of my chest up to next week. It would have been this week but due to issues with having someone drive me and a babysitter next week works better. we need to find out if the nodules in my lungs are growing, and if so how much they have grown since my last scan in January.

I was talking with Alex last night and it feels like everything is hitting me all at once. I usually try not to think about what's going on with me and go with the "I'll deal with it tomorrow" mentality, but I am running out of days to do that.

Some things that leave me conflicted is, I have told my mom and Alex that if the cancer has spread I will not have surgery. We do not know what these nodules in my lungs are right now but if they are getting bigger there's a good chance it's Chordoma. If that turns out to be the case, what do I do? Do I go through with what I said? What about my kids? Is it fair to them to have a mother who is there for them emotionally but not there physically? This disease has already changed me so much in just 3 short years, I would hate to see what it can do in the next 10. Is it really fair for them to grow up having to take care of me? For me to be a burden on them?

Or these nodules could be nothing, and I could be doing all this worrying for nothing as far as should I do the surgery "IF" the cancer has spread of not? Then comes the question, how much will surgery help me? If it takes me out of life with my kids for 6 months recovering only to give me 2 extra years is it really worth it? Can the doctors guarantee me no more pain, or at least 80% less pain? I don't know that I can go through with more surgery if they can't tell me that they won't be decreasing my pain because continuing to live like this is just cruel.

I was also registered at the hospital in Boston last week and was sent a hospital card in the mail. I will need this to make any appointment inside the hospital. Maybe not a big step to some but this is just another nerve wracking thing to me. An actual piece of evidence that this is really happening, and soon. Just looking at it makes me want to burst into tears. I just don't know how I am supposed to fly across the country and put my trust into doctors I have never physically met and hope they can take my pain and cancer away. What if they make it all worse? What if I don't come home?

I have been riding my (recumbent) bike the last few days trying to clear my head. But I have just felt so wiped out. I get like that every few weeks. I feel just tired and weak and the need to just stay in bed takes over. I am trying to push through it since I need to lose a few more pounds before I can officially have surgery. But it's hard to get out of bed when every single thing in your body hurts, the only thing that gets me up is my family. I am so lucky to have them.

until next time
xoxo

p.s here's a pic of my bike-

so what's next?

I have registered with the hospital in Boston and have one more CT scan of my chest scheduled here in Phoenix. My neurologist will hopefully be speaking to my doctor in Boston next week and getting information as to when I will be getting out to Boston. It's crazy, it feels like I have been talking about going to Boston forever and now it's getting so close.

Whats up with Kayla

Hi!

I've told my story hundreds of times to people, but have not written it down.. so here we go. The full story.

In October, 2006, I painted the bathroom in my house. I had some pain in my back, near my shoulder. I was pretty sore, and couldn't turn my head for a week or so. It went away for the most part, with some pain that hung around.

In January, 2007, I noticed my hands would go numb off and on. We did not think much of it, as we were planning our wedding and attributed it towards stress. When March came around, I went to see my Primary Care doctor, as the numbness would occasionally spread to my butt, stomach, or legs. My doctor did a carpal tunnel test, which turned out negative, and blamed the numbness on my weight.

October, 2007 I got married. My hands would go numb daily, with my stomach and legs happening often. It would not be constant, but would come and go throughout the day.

In May 2008, I went to a new primary care doctor, as my numbness was constant and I would have problems walking. The doctor ordered another carpal tunnel test, which turned negative, and then sent me to a neurologist.

On July 8th, 2008, I had my appointment with the neurologist. My right leg noticeable dragged when I walked, and my left hand was next to useless. He was very concerned that I had Multiple Sclerosis, and sent me for a MRI of my head and neck to check. Three days later, he called with the results, and let me know that I did not have MS, but had a large mass in my neck, and that I needed to see a neurosurgeon within the week. We scheduled an appointment with a neurosurgeon a few days later. He let us know that he wanted to operate, but was going on vacation and would do the surgery in three weeks, when he was back from his vacation. He let me know that if my symptoms got worse, that I should go to the ER.

One week later, I was completely unable to walk, or use the right side of my body. I went to the ER on Wednesday July 23rd, and waited 6 hours and had another MRI done. As soon as the MRI was done, I was surrounded by doctors and nurses and put in a neck brace and stabilized, and told not to move or risk becoming paralyzed. I was taken straight to the neuro intensive care unit, where I stayed for two days without eating while waiting for a neurosurgeon who could remove the mass. After 6 hours of surgery, I was returned to the neuro ICU where I painfully recovered for 5 days. I next spent 9 days in the regular neuro ward, but was insistent on going home at that point. After 5 days of being at home, my surgery incision felt like it was ripping open and burning, so I went back to the ER, where it was determined I had a staph infection, and spent another 4 days in the hospital.

I slowly recovered, with more pain than I ever imagined. The numbness I had felt before the surgery was gone, but replaced with terrible nerve pain. I did not get out of bed, except to use the bathroom, for over a month. Any small movements brought tears to my eyes. No medicine was strong enough to take the pain away. After three months, I finally started to leave the house, however being in the car was very painful. The surgeon who performed my surgery let me know that I would wake up one day and not even know I had a surgery, and would likely completely heal within 3 months. This was not the case, and continues to not be the case at all. The nerve pain continued, and would grow worse over time.

In January, 2009, reports came back from the pathologists around the country attempting to identify what the mass in my neck was. None of the doctors could make a diagnosis, however a pathologist in Massachusetts recommended that it was Chordoma Cancer. The pathologists and surgeons at Barrows Neurological Institute where I had my surgery dismissed this report, as I did not fit the normal pattern for this condition. They diagnosed it as a schwanoma, which is a noncancerous slow growing tumor.

At this point in my life, I had attempted to move on, and was happily 12 weeks pregnant. My pain level from the surgery had decreased, but the nerve pain did not. I could not spend extended time walking around, or being up and about. I went for a follow up appointment with the neurosurgeon, who let me know that if they went in for another surgery, this time through the front of my neck, and get more of the tumor out, my pain would decrease. We agreed to have the surgery after my son was born.

In May, I began to have shocking pain when I woke up in the morning in my feet, and my right arm would hurt and have shocking pains all the time. After walking around some, it would usually go away. By June, it was taking longer and longer to go away. The doctors scheduled a c-section at 37 weeks, 2 days, and my son Thane was born July 17th, 2009, healthy and happy, less than a year after my first surgery.

In August, the shocking pain continued to grow worse, and walking was becoming painful. On October 29th, I had a second surgery to remove more of the tumor. The pain in my feet was gone, and the arm pain only appeared occasionally. My neck pain did not change at all, and the doctor told me it would likely never go away. They were able to capture a much better sample of the tumor, and sent it off for testing again.

After healing from the second surgery, we tried to put our life back on track. We decided to have a second child, and things were going great. January 2010 was filled with a lot of emotion. I was officially diagnosed with cancer and we found out we were expecting our second child.

I had a lot of issues with the pregnancy, increased pain, low amniotic fluid and at 34 weeks sudden pre-eclampsia. It seemed that our little girl just  wanted to come early so at 35 weeks and 4 days, September 30th, 2010 Hadley was born. I had to spend the first 24 hours away from her in the Neuro ICU being monitored for possible injuries to my spine from the c-section. It was awful not being able to see my daughter until the next day but everything was fine with her and I and we were re-united.

In the 6mo since Hadley's been born my pain and problems have steadily increased. We have had to have someone come and help me watch the kids during the day because it is physically too hard for me. I have been having MRI's and the tumor has not changed significantly.