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

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

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

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.

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.

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

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 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?