As terrified as I am to find out exactly what's wrong on the PET scan, I'm at the point where I KNOW something isn't working. So I want to just get it done and get the new treatment started. Of course, through some stupid billing confusion they cancelled the scan on me……after months of them sending the bills for us to hold onto and never denying treatment, why do it now?? We got it sorted so I'm going today. I've really gone downhill the last few days. Increases in pain meds are never enough. It's so scary how fast it happens. On Monday, I could walk Blazer for thirty minutes and feel great for doing it. Last night, I couldn't make it up the stairs.
I hate that I need a new treatment already. This is completely retarded. I took such good care of my body from eating right to driving, always valued my life as a gift and treasured each day. I'm not learning from this, I'm just becoming bitter, resentful and angry. The world is a fucked up place that the irredeemable druggie assholes that have stormed through Callie's and my lives are living their own just fine and I'm the one stuck struggling.
PLEASE don't send me stories about how your friend/spouse/relative suffered through the hell of treatments and torture of disease only to not make it. I know you want to show how you understand but that is THE LAST thing I need to hear right now. I need a light at the end of the tunnel, I need to know I'll have at least a few years of remission. I hate that there's so much I want to do in the world, right at my finger tips but I can't do it because my stupid body isn't well enough to handle it. I hate RELYING on people. I hate that I wanted to help Callie with her luggage but I can't do it so I had to ask Chris to. I hate to have to ask for stupid little things like, get my toothbrush, get my food. My independence is one of my most treasured qualities and it's stripped from me. I hate that people have been so kind to me but I'll be too out of it to keep track of addresses to send thank yous.
The ER was as anticlimactic as chemo. I expected blood spurting and wives screaming but it was a lot of sitting around in various places. My x-ray came back fine but my bloodwork came back holycrap anemic. They called my poor oncologist at like 1am and she issued antibiotics and harder pain meds. The antibiotics make me throw up but I still managed to be 119.6 when I got weighed today!
Managed the PET scan without needing to put my arms over my head, yay!
Antibiotics seem to be working, my shoulder's felt progressively better. Not great…frustrating, it's still limiting simple activities, but better is better, I'll take it.
Results of the scan….the shoulder pain may be a new cancer site, there's also one in my leg and while the spots on my liver shrank, more have appeared. This means it's more aggressive than anticipated. It's mutating and resisting treatment after only the second one. My oncologist said she didn't want to scare me, but did want to be honest, which is, of course, scary. I mean it's bad enough to have it for no reason, as young as I am, let alone it being all Super Shredder on me.
We're doing a different chemo cocktail to hopefully smash it before it realizes what's coming.
She also was not thrilled with me getting a puppy. She said my parents could get a puppy but that I shouldn't be the primary caregiver–I can't do any of the clean-up or be around any time the puppy is learning not to bite/jump/scratch because of the infection potential.
): I don't know that my parents want to be doing that much of the work ): Now of all times, I really really really need my dog ): My dad said maybe when I'm 'done' with treatment, but if it's going to get complicated….when will that be? It doesn't bode well for the future….I want a dog in that future to come back to no matter what happens.
My next PET scan is coming up so they can compare the results and hopefully see my awesome obliteration of Mr. Squamous. My breathing is almost 100% better so I'm sure that the cancer is shrinking there but I'm worried about my liver ): It should be the same type, so it should be shrinking as well but I don't have that dramatic external proof so I worry.
Hehe this is what Tina made me:
I will whip it out at all appropriate (and inappropriate) occasions.
Actually I feel a little guilty for how generous everyone has been to me! I was really sick in Savannah but I feel SO much better now. I know the cancer is still there but it's not like my friend who has MS. He has a new symptom like every month and he has to give himself shots daily, I feel like I'm on vacation compared to what he has to deal with ):
Sooo the million dollar question is, why have I had back pain while I've been sick?
Because I've been coughing?
Because I can't sleep in positions my back likes?
Because I've got cancer on my spine!
The PET scan showed that my lungs are the primary location (this is good, I don't need any body part to be in worse shape than my lungs) and there's a little bit on my liver, two spots on my spine, and some around my abdomen. So I've got 6 rounds of chemo scheduled with PET scans and blood tests in between. And someone LIED TO ME D: I thought the mediport could be used for everything. No, only if it's "accessed" which they're pretty much only doing for the chemo so I still have to get needles every few weeks ): ): ): ): ):
Dr. Patel didn't talk about stages or predictions but she's very positive and cheerful. She's focused on one step at a time and seeing what progress we make. She said I've done really really well with the chemo so far and that's indicative that I will in the future too. My symptoms have improved (back pain decreased too!), I've had zero nausea and only been a little tired. She said I might get tired longer each time but overall should be doing better. We're both thinking that after round 2 I should be able to get off the oxygen. I'm glad to hear that because I know she was saying between rounds of chemo there's that waiting period where the cells start building up again but so does the cancer so I was worried I'd have to fall back on the oxygen in between. I'm SOOOO sick of being on the oxygen. It's weird to sleep with tubes all over and it makes my nose bleed so I'm constantly stuffing vaseline up there.
She said any little decrease in symptoms probably feels drastically better right now even though it's a small increase, just because I've been sick so long but I actually really do feel like I've had a dramatic decrease in symptoms. I mean, my back was CONSTANTLY in pain…all day, all night even with a heating pad and medication. Now I have barely noticeable discomfort.
I've got more appetite now so it's easier to eat, I don't have to force myself so much but I am down to 110 yikes. (113.5 according to my scale at home) I blame the hospital with all their fasting procedures and only giving me three meals a day. It took a week before they called in the dietitian who ordered snacks between meals for me :P So here's hoping that now I'm out I can start gaining. I'm STUFFED with pizza right now.
Oh yeah, I knew that they took my biopsy to a conference. I didn't know it was the national annual oncology conference…….how lucky is that?! It just happened to occur during the time I was in the hospital. Dr. Patel mentioned it because at the conference they discussed the type of cancer I have and how it's becoming more prevalent. It's not genetic although something about my genes may have made me more susceptible to it. They think there's an environmental exposure factor and they're trying to determine what that is. Damn pollution :P
It's still totally bizarre that it would be me…. so terrified of lung cancer that I don't even like being around people who smoke…. I'll breathe through fabric if I'm downwind…. I made a pact with my best friend in elementary school that we would never smoke
Yesterday I had my PET scan. Now I have this newfangled mediport that can work with PET/CT scans….EXCEPT that the people at the scan place didn't know how to access it D: so they had to do an IV anyway ugh. Oh well the tech that did it was really good and he talked about his iphone while doing it hahaha.
They pumped me up with glucose tagged with radiation that gets attracted to areas of rapid cell growth aka cancer. They had me nap in a room for 20 minutes to let it all explore my body. My oxygen tank was running low and my mom wanted to keep coming in and checking on me but the tech was like '…she's radioactive right now' hahaha I never EVER would have thought someone would say that about me. I totally had Spiderman daydreams and puppy daydreams. Heh I dreamed that I found an awesome breeder who decided to give me a puppy for free because of my situation plus she'd already named the puppy Ananzi so it was DESTINY!! The puppy had a black stripe over his face like a ninja turtle mask and he snuggled me (:
The scan itself was very relaxing…they did both a PET and CT at the same time so they rolled me in and out of a tube. I napped. They handed me food afterward and I was afraid to eat it because I thought surely the test wasn't over yet XD
Tomorrow I have a meeting with Dr. Patel so hopefully she will have the scan results and will tell me good news T_T here's hoping. I'm convincing myself it'll be good because afterr round 1 of chemo I've been feeling better each day. TODAY I feel better than I have in like 3 months except that I didn't sleep well last night. My breathing was better so we took the oxygen from 2 to 1.5 and my mom stopped hovering in my room all night. I ended up waking up from a bunch of nightmares that something went wrong with the oxygen and I couldn't breathe T_T
Also since I've been feeling so much better I'm hoping that bodes well for DOGGIE. I may have to check on other breeds though, I didn't realize it but beardies are pretty hard to come by and even if I find a good breeder there may be a huuuuuuuuge waiting list. They're so awesome though!!! I emailed the breeder referral person from the AKC website so fingers crossed!
Tramz said that when I get published they'll have to make a Lifetime movie out of me ;p
Medical Escapades | zellie | 
August 31, 2010 1:04 pm | 
Comments (3) 