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!

day 114

b nnnnnnnnnnnnnnnnnnn <--- those aren't my thoughts, they're my cat walking on the keyboard (but i think Bubba is saying good morning !)


advise for the day - - don't attempt to read your own xrays - - at 8:45 am yesterday my oncologist got out his little tape measure and compared my xrays side by side .. its HIS opinion that my tumor is now 6.0 cm instead of 6.2 cm AND it appears to be less dense in the upper right corner - - almost like you can see through it .. he's encouraged because this is the first time that any treatment resulted in a change in the tumor
so we continued with my 4th round of chemotherapy and 2nd round of avastin .. in the meantime, on Oct 25th, i'm scheduled for another brain scan (to rule out that "question mark" on my brain) i have an appointment to see how the rest of my body is doing with another PET scan .. it would be great news if my lymph nodes have returned to a normal size, perhaps the chemo has eliminated the cancer from my lymph nodes, so perhaps they won't have to be removed surgically .. then i go back for another chest xray and appointment with the oncologist on November 4th .. he figures by then he'll have a better idea if i should continue with radiation or perhaps on to surgery to remove the remaining tumor and of course the surrounding lung tissue

about 90% through the chemo i started feeling extremely nauseous .. a first for me ... this is one side effect that normally doesn't hit me until the 4th day after chemo .. my sister Susie drove me home .. we got out of chemo at 2:30 pm .. by 3:00 pm i was sound asleep .. i woke up around 8 pm, popped a sleeping pill, then i went back to sleep until 2:30 this morning
i have my pain pills handy just in case the Avastin starts causing me any discomfort .. i've got my Zofran handy in case the nausea kicks in again .. and i've got sister Susie for 2 more days .. oddly enough, i can never seem to take a nap unless either my sister, Susie or my daughter, Kissy are here  at the house with me .. i guess i'm lacking in the hostess department lol
i did a little research on radiation therapy yesterday .. besides a lot of medical mumbo-jumbo,the treatment does have its own set of side-effects, but nothing compared to chemo .. i think i could handle the rads !
of course the extent of any surgery would depend on how much of the tumor remains .. the surgeon would need to remove the tumor and enough lung to leave a clean 1/2 in margin around the tumor .. thats a pretty big chunk of lung .. so of course i'd need to submit to pulmonary testing first to make sure i'll be able to breath if i'm missing a big chunk of my right lung

i feel like i've been to hell and back in the last 4 months .. the docs and i are playing this little game "lets see how close we can get Pam to deaths door, without actually killing her, but killing the cancer" .. they've pretty much convinced me that they've gotten me closer to death than i've ever been before .. but my tumor has remained unaffected .. THAT has been the frustrating part .. all i wanted to see was some small sign that all this pain and agony and suffering (not only mine, but the agony that my friends, family and loved ones have shared with me this entire journey) has been for a reason .. just a small sign .. and i got that sign yesterday .. the tumor IS responding !!!  so ok .. sign me up .. bring me to deaths door yet again .. i feel like i have a chance now .. i have no idea how big of a chance .. but its a CHANCE to beat this damned cancer !!

and yes, i'm crying again :)



i was chatting yesterday morning at 2 am with my son .. i was just waking up, he said he still had about an hour of studying to do before he could get to bed .. then he asked me "whats the deal with the dolphins as your icon?"
i told him that one of the things on my "to do list" was that when i was recovering from my surgery in hawaii that i wanted to "swim with the dolphins" .. he laughed and said he had a couple of friends that could hook us up .. "us?" i questioned, surprised he'd want to go swimming with dolphins with me :)  "mom, i'd swim with sharks for you"


on the family note .. i have another grandniece !! My niece Lisa gave birth yesterday at 8 am to Kylie !!  Congrats Lisa and Willie and Grandma Linda !!



thanks everyone, for your prayers, your well wishes and good thoughts .. i am feeling so much more encouraged than i have been this entire roller coaster ride :)  thank you for being there for me .. for being my friends

day 113?

so much for a good nights sleep .. even with the sleeping pill, i'm wide awake at 2 am
i just had to share this with y'all


i swear i just got done with jury duty less than 2 years ago .. of course, its really not convenient for me to serve on a jury right now .. i've got chemo brain and i'd have to have them keep repeating themselves .. plus all these digestive problems that go hand-in-hand with chemo .. well .. lets just say i'd be calling a lot of recesses lol

there IS a box to check that would excuse me from jury duty but i need a note from my doctor .. that just doesn't sit right with me .. i'm almost 50 years old and i should be old enough to write notes for myself .. but no, now i need to bug the doc .. so i wrote the note, all he has to do is sign it
"please excuse Pam from jury duty next month because of her cancer treatment" .. its so close to the notes i used to write to excuse my daughter from school .. i guess life does have a way of coming full circle eh lol



i don't know how i feel about the possibility of not having chemo today .. its not that i like chemo .. in fact when people ask me now if i'm allergic to anything i always respond that i'm allergic to chemotherapy .. but at least i knew what the plan was for today .. i like having plans, they bring me comfort .. having the treatment all up in the air, still being a guinea pig trying out new drugs .. eh .. not my cup of tea

i was shocked to see no visible change in the size of my tumor .. as sick as i got this time i thought for sure we'd have that thing running for the hills .. but i also know that using Avastin for stage IIIa lung cancer is really new .. all the studies and trials were done on stage IV .. the studies i read (or had the brain cells to actually comprehend) stated that the drug added an average of 2 months to patients with a prognosis of 10 months of life left .. but they didn't go into detail about how many treatments of avastin they had to have before the tumor responded

and just in case you picked up reading my journal mid-stream, what we're trying to do isreduce the size of the tumor in my right lung to allow for surgery .. as my cancer is staged now, the tumor size, located in my right lung (6.2 x 4.4 x 3.8 cm), the lymph node involvement (the lymph nodes on the right side and between my lungs are cancerous), the cancer type (the non aggressive type of non-small cell), and the fact that we haven't found any new cancer = cancer speak means i'm NSCLC T3N2M0 and that gives me about a 5% chance of living for 5 years .. IF i can get the tumor removed surgically, my odds increase to 25%


oh, and i'm STILL a non-smoker !!  i actually went 2 weeks without using my nicotine patches, (OK, i confess i was just too sick to get out of bed to get them) but as i'm moving closer and closer to chemo, i've used the patch again for 2 days .. but i'm not gonna get down on myself, cause i'm still not smoking .. here is my newest update from quitnet . com ..
Your Quit Date is:Friday, June 24, 2005 at 6:30:00 PM
Time Smoke-Free:111 days, 12 hours, 17 minutes and 28 seconds
Cigarettes NOT smoked:2230
Lifetime Saved:17 days
Money Saved:$392.00

i'll take those precious 17 days thank you :)

day 112 "name the tumor"

have you ever done something that somebody warned you NOT to do, but you decided you knew better than they did and did it anyway?
i'm feeling kinda like the time i was a child and decided i couldn't wait until Christmas day and snuck down and unwrapped a present under the tree .. and afterwards i felt awful and realized that the surprise of unwrapping a gift on Christmas day was a lot more fun than finding out what i was getting before Christmas
i just got back from having the xray and blood work done .. and realized nobody told the xray technician that i wasn't supposed to see the xray
i told her that i really wanted to see it cause my tumor was feeling like it had been around long enough that it had qualified as "one of the family" and wanted a name

she laughed .. "once it has a name, its going to expect a present at Christmas"
"and of course, its going to expect to be invited to Thanksgiving dinner" i added

"and i suppose you'll have to take it trick or treating"
"not only that" i joked, but "its going to want a costume for Halloween and i have NO idea what kind of costume to get a tumor"
"maybe it could be a cotton ball" she suggested
"nope .. that wouldn't work .. its more of a rectangle shape, so probably more along the lines of a Volkswagen van"

"ohhh !! we'll paint it florescent green with peace signs all over it!!"

but i shouldn't have looked at the xray .. i'm NOT a specialist .. i can only guess .. and from where i was standing, my tumor doesn't look any different than it did back in June

i've got a call into my sister Susie to double check to make sure the doc said no chemo or avastin tomorrow if the tumor hadn't responded .. i just need to make sure i didn't make that up and that he really DID say that to me

of course, i could be wrong .. maybe i don't remember what my tumor looked like

i just got a call back from sister Susie and she recalls that the doc was rather ambivalent about plan C .. remember, there is basically NO research done on treating patients with stage IIIa non-small cell lung cancer with Avastin .. so he may decided to hit it again or give up on the chemo/avastin treatment and go straight to radiation treatment

so now i'm off to call my wife-in-law (my ex-husbands wife) since she was in radiation oncology for 3 years and get a little more info from her as to what to expect if i end up needing radiation

now i have the added stress of naming the tumor .. "tommy tumor" sounds so pedestrian .. any good suggestions?