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
Monday, June 27, 2011
waiting, waiting, waiting
this waiting thing is so hard. not too much longer and we will know the plan for treatment. then I have to decide if I want to go through with treatment or not. that's the biggest question on everyone's mind..what will I do?
it all depends on what the doctors say really. the benefits vs. the actual risk of surgery/recovery time. I know most of you think, "that's crazy and stupid, of course go for the surgery crazy lady!" but it's just not that simple. my first spinal surgery was completely awful. I woke up screaming in pain, the first time I sat up my head was pointed down to the floor and I couldn't move it up. I asked why and it was because my neck was so swollen. it looked like there was a cantaloupe sitting on the back of my neck. it took months to where I was able to start to do things for myself and years before I drove again. not to mention before I had that surgery I had pain but after the surgery I had immense immeasurable indescribable pain that's still with me today.
I also have dreams that I have moments where I am paralyzed. where one minute I am walking and the next my legs are like cement and I can't move them for the life of me no matter how hard I try. if the doctors tell me there's a risk of paralysis I don't know I want to spend the rest of my life that way. I want to walk with my kids no matter how much pain it physically causes me. plus lets face it, the average life span after a person diagnosed with chordoma is 7 years. july 8th will be 3 years since they officially found my tumor so I don't want to be away from my kids for any extended period of time for a reason that may not work.
the good thing is, today I feel good.
xoxo
kayla
it all depends on what the doctors say really. the benefits vs. the actual risk of surgery/recovery time. I know most of you think, "that's crazy and stupid, of course go for the surgery crazy lady!" but it's just not that simple. my first spinal surgery was completely awful. I woke up screaming in pain, the first time I sat up my head was pointed down to the floor and I couldn't move it up. I asked why and it was because my neck was so swollen. it looked like there was a cantaloupe sitting on the back of my neck. it took months to where I was able to start to do things for myself and years before I drove again. not to mention before I had that surgery I had pain but after the surgery I had immense immeasurable indescribable pain that's still with me today.
I also have dreams that I have moments where I am paralyzed. where one minute I am walking and the next my legs are like cement and I can't move them for the life of me no matter how hard I try. if the doctors tell me there's a risk of paralysis I don't know I want to spend the rest of my life that way. I want to walk with my kids no matter how much pain it physically causes me. plus lets face it, the average life span after a person diagnosed with chordoma is 7 years. july 8th will be 3 years since they officially found my tumor so I don't want to be away from my kids for any extended period of time for a reason that may not work.
the good thing is, today I feel good.
xoxo
kayla
Friday, June 24, 2011
another shout out
I would like to thank the Westin (Copley place) for setting us up with a room for our upcoming trip to Boston. They are a very generous hotel that is very close (within walking distance) to the hospital and they will give rooms to people in my situation *provided they have available rooms* What an amazing thing this is!
There is truly no way I can thank all these amazing people for coming through and helping my family so much in the time of need. You can bet that we will definitely pay it forward someday, somehow.
xoxo
kayla
There is truly no way I can thank all these amazing people for coming through and helping my family so much in the time of need. You can bet that we will definitely pay it forward someday, somehow.
xoxo
kayla
results of CTPA and MRI
the results are good!! while the tumor is definitely not in a good spot, it's not as bad as we all had been thinking. the CTPA showed that rather than running in and around my arteries and veins its more just pushed right up against them. as for my MRI there is no significant change. basically that means small change but not enough to really document. it's up to my neurologist and neurosurgeon to look at the actual films to see how much change was made.
I can tell a difference though. things in the last couple weeks have been getting a little more difficult. for one it's starting to get harder to write. the tumor affects the right side of my body and I use my right hand to write. it's hard to hold a pen and press it to paper. I am starting to do things even slower on my right side and whenever I move my neck my feet get that buzzing feeling. I also noticed that driving more than 10mi is really hard on me so I have stopped driving anywhere far (which is good I suppose with gas prices lol). I start to get really tired and then my arms start to go numb and feel not attached to my body. it's super weird.
so that's the update for today. the closer boston gets the more nervous I am becoming so you may hear more from me.
xoxo
kayla
I can tell a difference though. things in the last couple weeks have been getting a little more difficult. for one it's starting to get harder to write. the tumor affects the right side of my body and I use my right hand to write. it's hard to hold a pen and press it to paper. I am starting to do things even slower on my right side and whenever I move my neck my feet get that buzzing feeling. I also noticed that driving more than 10mi is really hard on me so I have stopped driving anywhere far (which is good I suppose with gas prices lol). I start to get really tired and then my arms start to go numb and feel not attached to my body. it's super weird.
so that's the update for today. the closer boston gets the more nervous I am becoming so you may hear more from me.
xoxo
kayla
Monday, June 20, 2011
just stop
stop telling me other people have it worse. because you know what, I have it pretty damn bad. stop telling me I am going to get better because I won't. stop telling me who I have to fight for. I know, but it still doesn't stop the torture happening to my body daily. stop saying, "oh I have been there I know". no you haven't. until you've felt like you are constantly walking on a mixture of needles and shards of glass; that your entire spine has been lit on fire; you are achy all over; your neck feels like it's being stabbed with a very dull blade; and you want to rip your right arm off just to stop the pain going down it, then no you don't know how I feel. And that's on a good day. just because I smile does not mean that everything is going great and I want you to remind me how much I stand to lose if I don't do things. just stop trying to be so fucking pleasant when I am sitting here trying to not die with that fake smile plastered all over my face. stop telling me to fight when it takes all I have to just to wake up and get out of bed every day.
Saturday, June 18, 2011
what. a. day.
Friday was just one of those days that fly by, but you don't want to re-live. for me, it was test day. I had a CTPA done which is a test that takes images of the pulmonary arteries. of course I don't have pulmonary artery disease, but since I do have that tumor wrapping around however many blood vessels and arteries it is good to know exactly what it is doing in there. after my CTPA I had an MRI with and w/o contrast and I absolutely HATE HATE HATE MRI's. Luckily I got my pain medicine and anxiety medicine dosages just right this time so I wasn't passing out on the table but I also was freaking out in the machine.
I also got great news on the way to my appointment! A confirmation email with the dates and times of our flights to and from Boston. I am so extremely grateful and happy that that is taken care of.
I also got great news on the way to my appointment! A confirmation email with the dates and times of our flights to and from Boston. I am so extremely grateful and happy that that is taken care of.
F*#K YOU TARGET PHARMACY
ah Thursday afternoon I was so angry I could have spit bullets. if someone has ever taken any kind of medication you know that it is your responsibility to stay on top of refills, so for this I do take part of the blame. I didn't realize I was almost out and wouldn't have enough for my mail order pharmacy to refill my topamax and get it to me by friday morning, so I had my doctor call me in a 2 week supply to target. looooooong story short, there was an issue on targets end where they couldn't print a label. without a label they can't legally dispense medication.
normally when a patient is on medication where a dose can not be missed (like topamax because it will cause seizures especially the dose I am on) pharmacies will give you 3 or 4 days worth until things get sorted out. nope not this lady! she was refusing to help at all (though she said she was doing everything she could...sorry sitting there saying that means jack shit to me lady).
I mean I guess she tried doing all she could do, she did try calling her help desk ONE TIME at 9 am and I went to pick up my meds at 4 PM. nothing was done since then. Then of course my husband tries calling and she gives him the same spcheal but keeps saying it was our insurance that was the problem. He asks to speak to the help desk but only employees can so my husband wants the pharmacy's district office (but of course they don't have that either). So then my husband tells her that we will be in to talk to the manager tomorrow -who we know because we go in to that pharmacy at least 2x a week.
I also told that pharmacist last night that I will no longer have any prescriptions filled at that target. and she acted like no big deal. she must not have realized that we do give them A LOT of business. come on, a cancer patient who gets 10 medications a month with a son who has eczema and reflux? too bad she was such a bitch.
thanks to my wonderful love, alex for taking care of it for me. and cvs for filling my prescription. Happy ending, yay!
xoxo
kayla
normally when a patient is on medication where a dose can not be missed (like topamax because it will cause seizures especially the dose I am on) pharmacies will give you 3 or 4 days worth until things get sorted out. nope not this lady! she was refusing to help at all (though she said she was doing everything she could...sorry sitting there saying that means jack shit to me lady).
I mean I guess she tried doing all she could do, she did try calling her help desk ONE TIME at 9 am and I went to pick up my meds at 4 PM. nothing was done since then. Then of course my husband tries calling and she gives him the same spcheal but keeps saying it was our insurance that was the problem. He asks to speak to the help desk but only employees can so my husband wants the pharmacy's district office (but of course they don't have that either). So then my husband tells her that we will be in to talk to the manager tomorrow -who we know because we go in to that pharmacy at least 2x a week.
I also told that pharmacist last night that I will no longer have any prescriptions filled at that target. and she acted like no big deal. she must not have realized that we do give them A LOT of business. come on, a cancer patient who gets 10 medications a month with a son who has eczema and reflux? too bad she was such a bitch.
thanks to my wonderful love, alex for taking care of it for me. and cvs for filling my prescription. Happy ending, yay!
xoxo
kayla
Monday, June 13, 2011
hello again!
things are coming together and it's all thanks to my mom and alex. without them none of this would be possible. Alex has been working non stop to get flights and hotels covered for our upcoming trip and my mom has been working on getting the medical end covered. Thanks to the amazing people at Mercy Medical Airlift we will be able to fly to and from Boston for treatment at a low cost. And after working with the wonderful group at Astra Zeneca Hope Lodge we will have a place to stay while I am having proton beam radiation. It's amazing all the help that's out there for us, makes me cry just thinking about it.
We are still working hard on figuring out what to do with the most important people in our lives, little miss hadley and dangerous thane. it's too hard to bring them across country and disrupt their lives even more than they will be already, but who can I trust to watch them at home? we have an amazing person, kim who watches them during the day with me but we will need more help. so for now we will keep working on that.
if you are looking to a great place to donate, the astrazeneca lodge in Boston is one I recommend! Or Mercy Medical Air is an amazing company as well.
We are still working hard on figuring out what to do with the most important people in our lives, little miss hadley and dangerous thane. it's too hard to bring them across country and disrupt their lives even more than they will be already, but who can I trust to watch them at home? we have an amazing person, kim who watches them during the day with me but we will need more help. so for now we will keep working on that.
if you are looking to a great place to donate, the astrazeneca lodge in Boston is one I recommend! Or Mercy Medical Air is an amazing company as well.
Wednesday, June 1, 2011
we have some news
everyone else seems happy but I am pretty sad. we have a firm date for Boston. July 7th and 8th Alex and I will be heading up there so I can meet with my team of doctors and have a couple final tests done and discuss everything that will happen. Then I will return home for about 10 days and go back, have 10 days of radiation and then surgery. After surgery (we don't know how long yet) I will have more radiation. We are thinking I will be out there at least 2-3 months. I don't know what I am going to do without my family and friends, I feel broken over this. Before I could ignore it and pretend it wasn't happening but now with a date (that's fast approaching) I have to face reality and figure out how we are going to make it all work out.
What's going to happen with our kids? What's Alex going to do about work? How soon will my mom and him have to come back to Arizona after my surgery? I know that I already do horrible in hospitals and how will I have any motivation to get better without a support team around me? I know it's impossible to just pick up and move everyone I love and make them put their lives on hold for me but I feel like that's what I have to do and it's not fair. At least we have a month to sit back, talk and plan. Oh yeah and get a will written up, anyone know how to do that by any chance?
What's going to happen with our kids? What's Alex going to do about work? How soon will my mom and him have to come back to Arizona after my surgery? I know that I already do horrible in hospitals and how will I have any motivation to get better without a support team around me? I know it's impossible to just pick up and move everyone I love and make them put their lives on hold for me but I feel like that's what I have to do and it's not fair. At least we have a month to sit back, talk and plan. Oh yeah and get a will written up, anyone know how to do that by any chance?
Tuesday, May 10, 2011
Buy A Candle!
ok I am begging you buy a candle!
for every candle sold (and I had Braithwaite House do the math for me) $4.25 will be donated to the Chordoma Foundation in my honor. Thanks to an amazing woman who has known me for a few years, they have made a candle label for me and have been selling "Kayla's Conquest" Candles since January. It was only supposed to be a 12 week thing but Braithwaite House has decided to go ahead and offer these candles until the end of the year to try and help me achieve my fundraising goal! How AMAZING of them!
Please buy a candle
http://www.shop.thebraithwaitehouse.com/searchquick-submit.sc;jsessionid=3021911B784D3C297CDF2F40739AE41C.qscstrfrnt03?keywords=Kaylas++Conquest
or you can donate directly to the Chordoma Foundation and read my story/leave me some love (or just leave me some love, I like that too)
http://chordoma.fundify.com/pages/220
for every candle sold (and I had Braithwaite House do the math for me) $4.25 will be donated to the Chordoma Foundation in my honor. Thanks to an amazing woman who has known me for a few years, they have made a candle label for me and have been selling "Kayla's Conquest" Candles since January. It was only supposed to be a 12 week thing but Braithwaite House has decided to go ahead and offer these candles until the end of the year to try and help me achieve my fundraising goal! How AMAZING of them!
Please buy a candle
http://www.shop.thebraithwaitehouse.com/searchquick-submit.sc;jsessionid=3021911B784D3C297CDF2F40739AE41C.qscstrfrnt03?keywords=Kaylas++Conquest
or you can donate directly to the Chordoma Foundation and read my story/leave me some love (or just leave me some love, I like that too)
http://chordoma.fundify.com/pages/220
Saturday, April 30, 2011
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
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
Friday, April 22, 2011
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.
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.
Tuesday, April 19, 2011
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-
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-
Friday, April 15, 2011
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.
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.
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