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
Monday, July 25, 2011
Friday, July 22, 2011
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
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
Tuesday, July 5, 2011
Sunday, July 3, 2011
dun du du nun!!
so I thought this deserved it's own post. It's absolutely UH-MAZING news. I can't believe I have forgotten to tell you all this the last few days. anyways, I got a letter in the mail from the chordoma center and it said that the average age for people diagnosed with chordoma has officially been upped from 7 years to 9 years!! WOOHOOO!!! 2 extra years!!! now that's the average life span which means that people on average are living longer with chordoma! of course I am trying to beat everyone ;o) I've always been competitive like that...
gasp. and a gash!
anyone who lives in central arizona knows that we do not get much weather action, so we wait all year for what's called "monsoon season". IT has finally arrived! now with monsoon season comes a lot of pain. all the humidity and pressure causes a lot more pain in my neck, bones and muscles so while it's nice to have rain and some activity besides just heat it's also hard.
yesterday I posted on facebook that it was 120 degrees when I left costco GASP!! the monsoon hit and when I got home (only a 7mi drive) it was 82 and pouring. I could feel the release of pressure from the atmosphere which was really nice on my neck, but then I felt it start back up again this morning. we usually will get hit with a monsoon heatwave and humidity plus pressure for about 4-5 days and then it will break and come back. this will happen until september.
so my husband hasn't been feeling well and decided that he would go to urgent care (he has strep throat) and my mother in law was going to come and get the kids for us since all the monsoony weather is kicking my ass -oh and plus with my great balance (or lack there of) I fell this morning and jarred myself pretty bad. we were getting things ready for the kids to go, our son was in our room on the bed. he was supposed to be sitting and watching dino dan when I hear him fall and start crying.
BIG OL GASH on his forehead. my poor baby! off to the hospital I go with him. for 4 hours we sat there. I wheeled him around in a wagon (which he loved and I would have never been able to make it through without the wagon). Thane did amazing, he is a very strong little boy and now has 3 stitches that will accompany him to his 2nd birthday!
the monsoon is starting to roll in now, time to go!
xoxo
kayla
yesterday I posted on facebook that it was 120 degrees when I left costco GASP!! the monsoon hit and when I got home (only a 7mi drive) it was 82 and pouring. I could feel the release of pressure from the atmosphere which was really nice on my neck, but then I felt it start back up again this morning. we usually will get hit with a monsoon heatwave and humidity plus pressure for about 4-5 days and then it will break and come back. this will happen until september.
so my husband hasn't been feeling well and decided that he would go to urgent care (he has strep throat) and my mother in law was going to come and get the kids for us since all the monsoony weather is kicking my ass -oh and plus with my great balance (or lack there of) I fell this morning and jarred myself pretty bad. we were getting things ready for the kids to go, our son was in our room on the bed. he was supposed to be sitting and watching dino dan when I hear him fall and start crying.
BIG OL GASH on his forehead. my poor baby! off to the hospital I go with him. for 4 hours we sat there. I wheeled him around in a wagon (which he loved and I would have never been able to make it through without the wagon). Thane did amazing, he is a very strong little boy and now has 3 stitches that will accompany him to his 2nd birthday!
the monsoon is starting to roll in now, time to go!
xoxo
kayla
Friday, July 1, 2011
bueller...bueller...bueller?
anyone still read this thing?
we leave for boston in 5 days and I feel like I have nothing prepared. I have a notebook with questions written down but that's about it.
to make things worse my son has become very ill this week and we are treating him and his skin with a very strict regimen (he has bad eczema. reflux and eosinophilic esophagitis that have both flared up extremely bad). I am hoping he is better asap because I can't stand to see him so miserable and unhappy. plus we are leaving to go across the country and no one can care for him like mama.
so on top of everything else I need to make lists of the kids medication routines (my daughter also has really bad reflux) and my sons skin routines. we also need to make sure we have everything on hand for him to eat *in case he wants to, since has only wanted formula since tuesday* that is on his safe food list.
in my head I know things will work out fine, we have kim, our nanny who we love as family and vice versa. she will be here during the day and my mother in law will come at night. it's just hard to be away right now with all the uncertainty going on with our son and his skin and stomach.
now back to my un-preparedness! so I don't have anything ready besides a list. since my mother in law will be staying at night I want my house to be nice and tidy and CLEAN. well with my pain levels and alex being the soul caretaker after working 40+ hours a week and traveling almost weekly there's not always time for our house to look sparkling. don't get me wrong our house is not disgusting but it could use a good deep scrub. (I see things, looks like a guy cleaned it and I love alex for trying!) but where am I supposed to get the strength, stamina and time to do this in the next 5 days?! I also have to pack and am supposed to rest because traveling is going to be extremely hard.
I wish I could snap my fingers and be in boston. but I guess anyone (with pain or not) probably wishes they didn't have to deal with actual travel. it would be nice to just snap and be at your destination. unless it was a road trip.... I always loved road trips..
until next time!
xoxo
kayla
we leave for boston in 5 days and I feel like I have nothing prepared. I have a notebook with questions written down but that's about it.
to make things worse my son has become very ill this week and we are treating him and his skin with a very strict regimen (he has bad eczema. reflux and eosinophilic esophagitis that have both flared up extremely bad). I am hoping he is better asap because I can't stand to see him so miserable and unhappy. plus we are leaving to go across the country and no one can care for him like mama.
so on top of everything else I need to make lists of the kids medication routines (my daughter also has really bad reflux) and my sons skin routines. we also need to make sure we have everything on hand for him to eat *in case he wants to, since has only wanted formula since tuesday* that is on his safe food list.
in my head I know things will work out fine, we have kim, our nanny who we love as family and vice versa. she will be here during the day and my mother in law will come at night. it's just hard to be away right now with all the uncertainty going on with our son and his skin and stomach.
now back to my un-preparedness! so I don't have anything ready besides a list. since my mother in law will be staying at night I want my house to be nice and tidy and CLEAN. well with my pain levels and alex being the soul caretaker after working 40+ hours a week and traveling almost weekly there's not always time for our house to look sparkling. don't get me wrong our house is not disgusting but it could use a good deep scrub. (I see things, looks like a guy cleaned it and I love alex for trying!) but where am I supposed to get the strength, stamina and time to do this in the next 5 days?! I also have to pack and am supposed to rest because traveling is going to be extremely hard.
I wish I could snap my fingers and be in boston. but I guess anyone (with pain or not) probably wishes they didn't have to deal with actual travel. it would be nice to just snap and be at your destination. unless it was a road trip.... I always loved road trips..
until next time!
xoxo
kayla
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