day 146

i've been working my way through journals this morning that posted entries on how they feel about the ads in our journals .. i've read the notices of those journals moving to ad free space .. i've read of journals going private until something changes and i've read of people who's journals are essentially going on-strike until aol stops selling our personal "Your Thoughts. Your Blog" space as advertising.

i am angered that ANYONE at aol decided my thoughts, my life, my words are for sale

i am angered because i feel i've been forced to make a decision .. to take a stand against something i feel is wrong

the part that upsets me the most is that from the VERY beginning of aol Journals, we here at JLand have been treated like puppies attempting to play with "The Big Dogs" .. and they refused to let us play .. we didn't have REAL blogs .. they were only aol Journals .. anyone who was a part of the corporate aol giant couldn't have anything worthy of reading

because of my aol journal, i made the front page of The Washington Post .. proud that my journal had finally received some form of recognition outside of aol .. gathering from my email, guestbook and comments, i have a large number of readers who are not aol members .. they found me via the internet, some google search on lung cancer, or on some of the medical procedures i've undergone .. and now because of some decision some idiot at aol made, they've sold my journal as advertising space and pissed me off in the process

and guess what?  guess who's laughing at us?  guess who's shouting "i told you so" .. yup .. those Big Dogs we felt we deserved to play with are laughing at us

thanks aol .. we've been waging an uphill battle in an attempt to allow aol journals just a bit of recognition from the outside world and now you've made it impossible to be taken seriously .. we're nothing now but silly little walking billboards for aol

what am i going to do? how am i going to respond?  honestly, i haven't decided .. i don't know if i have the energy to fight aol again (yes "again" .. sometime in the past my journal had gone on strike until aol "fixed" something .. i don't even remember what it was .. sheesh)

i am torn .. my faithful "real world" readers .. who probably don't give a flying fig about the politics of feeling wronged by excessive aol advertising .. my faithful aol jland readers .. who are angry, saddened and frustrated .. i do know that some corporate giants refuse to listen unless their pockets are less full .. until it hits their pockets, "it" doesn't exist

i feel like i need to be very careful here about what i write .. the pressure of receiving the "Vivi Journal of the Year Award" .. i hate feeling like i am under a microscope

i am angry .. i am going through the most stressful time of my life .. i am sitting here now, another morning of coughing up blood, facing yet another day of medical tests and undergoing my first radiation/chemo treatments in a matter of days and i don't feel right about sharing any of my heartbreak in my journal where aol can make money off of my struggles

so back to my original quandry .. what, if any, kind of stand do i make in my journal?  i still have not decided .. all that comes to mind is that pamphlet about chemotherapy that reminded me that i would be wise to put off making any important decisions until my treatment is complete

important?!?

my journal, my readers .. are one of, if not THE most important facets of my life

again .. thanks aol .. thanks

my own advertising

day 143

i've got a lot on my plate today, so instead of sharing thoughts, i'm sharing pictures :)
i guess its become a family joke about me taking pictures of my kids sleeping .. so here's another one to add to my collection .. my soon to be 15 year old daughter .. sleeping soundly in our home :)


i snagged this one from my daughters collection of pictures she took of her new lip ring .. ain't she adorable?!?


my sister, Nancy just sent me this picture of my mom and their friend, Lisa .. mom had just given Lisa the 2 chemo caps that Dee had crocheted .. Lisa is loving both of her new caps :)


and it wouldn't be a pictorial entry if i failed to share our accidental garden .. its literally growing like a weed .. what you can't see, and what i can't seem to get a picture of, are the dozens and dozens of sunflower seedlings that have been sprouting up in the garden !! in the past few weeks, there must be a dozen ears of corn growing now too :)


today my daughter is going back to her dad's house .. but she's coming back on Thanksgiving so we can spend the day together .. i'm thinking about kidnapping her .. keeping her a few more .. days? weeks? years? .. i'm just not sick and tired of her yet .. as stupid as it sounds, i kinda wish she and i could get in a fight right before she leaves so i WANT her to go .. i'm probably gonna be the one calling her a few hours after she leaves, crying, missing the hell out of her .. i just wish she could stay home ya know? :)

day 142

where do i begin?  ::big sigh::
i found out where to begin .. my daughter spent the night with me (again!!!) so i just snuck in and took a picture of her sleeping .. i can't get access to the printer without waking her up so i'll have to share it later :)

my daughter and i ended up going shopping for teenage undergarments yesterday morning .. she was down to one bra that was barely holding itself together .. and now she's got a stash to keep her in dainty feminine brand new under thingys every single day of the week .. and i had a blast .. i'm taking advantage of being able to park in all the prime parking spots .. the parking spaces are so HUGE and my truck fits nicely .. the spaces are so close to the stores that i don't have to try to remember where i parked the truck .. we shopped at Target, mostly because i knew they had those carts i could drive instead of using up all my energy walking .. they're just a bit harder to maneuver than i realized .. i almost wounded 2 people and my daughter had to run along behind me and the cart putting all the portable clothing racks back into place after i got done moving them with the cart so i could just get through

then we headed off to the radiology oncologist .. called something like that .. my daughter is finally getting the hang of walking slow and even puts her arm out for me to hang onto when we walk :)  this is the first appointment my daughter has gone to with me .. i was a bit disappointed that we didn't even get into the measuring or tattooing .. this was just an "all talk" appointment and a brief physical exam and a chat about my current symptoms .. he asked me if i'd been coughing up more blood lately and i nodded .. this was something i hadn't shared with my daughter .. its gotten a lot worse the past 2 weeks .. the radiologist said he'd be able to help with that .. which is great cause i hate it .. i really really hate it

tuesday i go back in for measuring, marking me up with a felt tip pen (i asked for the purple pen) around 6 tattoos, and then wednesday i go back to the hospital for another CT scan

tentatively, i start the actual radiation treatment on Monday, November 21st (one treatment a day, 5 days a week for 5 to 6 weeks)
i should be ok to drive myself the first 3 - 4 weeks .. the doc says to expect the side effects tokick in during week 4 (this is when i started freaking out)  i explained that i live alone and except for my 4 chemo weekends when my sister Susie cares for me, i've taken care of myself .. well, i've tried :)

he starts shaking his head .. that just isn't going to be possible to me to care for myself after week 4 through about week 8, 9 or 10 .. and he says i can forget about being able to work full time .. that just isn't going to happen .. and i need to make arrangements since my routine will be wake up, go to treatment, come home, take a pain pill and go back to sleep

for around 5 weeks

and even though i've gained back 8 pounds, i can expect to lose a lot more weight when the radiation starts effecting my esophagus (wow, i had to spell check that one .. i don't even think i've written the work esophagus before let alone knew how to spell it) doc says there is a really good chance my esophagus will become so irritated and swollen that i won't be able to take pain pills or swallow, let alone eat or drink for a few weeks .. they will prescribe what is commonly referred to as a mouthwash .. painkillers, and stuff but eating will probably be out of the question

so he's checking with my oncologist to recommend they insert a feeding tube .. (this is the point where i wanted to ask for smelling salts cause i thought i was going to pass out)  um .. i don't want a feeding tube, thank you very much .. do YOU want to feed me liquids through a tube in my tummy? ha ! i didn't think so .. i don't want to either ..

and i found out that the radiation will indeed be directed at my lymph nodes and my tumor .. and i'm going to get sunburned .. mildly .. he doesn't think i'll get the blisters (thank god for some good news)

i don't know where on earth i got the impression that this radiation thing was gonna be cake compared to the chemo thing .. i wasn't ready for this kind of news .. ask me how bad i wanted a cigarette .. or a drink

and i need to talk to my boss / bosses to let them know that during the busiest time of the year i'm going to have to reduce my hours for several weeks .. i'd love to be a fly on the wall for that conversation .. oh wait .. i guess i have to actually BE there eh .. they are so not going to be happy .. i don't think the IRS really cares how sick i am or how behind i'm going to get in the preparation of 50 tax returns .. i can only hope that they continue tobe patient with me and know that i'll get as much done as i can

so guess what i'm going to be doing through Christmas? lol  ick

the other good news (i hope) is that both my children will be out of school and home during the time that i'm going to need full time care .. not that my kids know a thing about taking care of someone .. but i've already warned them that they can plan on spending time taking care of me this christmas .. its going to be hard for me since i am usually the one spoiling my children .. trading hats with them is going to be difficult

we laughed and joked through the entire appointment .. at first my daughter was puzzled and a bit embarrassed that mom would be goofing it up so much .. but during a brief moment when the doc left the exam room (to fetch the felt tip markers so i could choose my color) i explained to my daughter that laughing and joking is the ONLY way i know how to keep from falling apart .. i could either laugh or fall on the floor in a heap of tears and fears .. she finally "got it" and within minutes was tossing her own 2 cents in making both the doctor and i literally laugh out loud

i'd share more of that (like her suggestion that she be allowed to break off bits of In and Out burger and shove them down my feeding tube) lol but i've only got a few minutes before i call my mom so i need to get this posted to my journal

i am thinking i am gonna have a good cry when my daughter leaves .. she has been so good for my heart and its felt like so long since i've had company .. someone to laugh with .. watch tv with .. eat dinner with .. cuddle with .. i think i don't want her to leave .. but i know i don't have the energy to keep up with her ;-)

and shes looking absolutely devine with her lip ring !!! we made a good decision!