Sunday, 11 June 2006

to all

Dear All
this is Pamela Hilgers Daughter Christina Hilger.
i want to thank all of you for your support and kindness you have shown to Pam and our family
i thank you also for letting her into your prayers and thoughts.
she is dearly missed.
please email me at trbl393.
i love you mommie,
kissy

Sunday, 16 April 2006

Please note

Pam moved her journal to AOL Journals UK in November 2005, in protest against the inclusion of advertising on the US site. Her story resumes on day 149.


Pamela Hilger passed away on 16 April 2006 at the age of 50. 

Her sister, Nancy, posted the following in the comments section of Pam's last entry, which she made on 9 April 2006, the 287th day of her battle with cancer.

I don't have other information, as to exactly when, or anything else, her ex husband called my sister Susie about an hour ago to let her know.

She is at peace now, she's not in pain, she doesnt hurt. We who loved her are the ones who are suffering now, and i know that my life is better for having had her in it, so the pain even can be appreciated, That I hurt because she was my sister, and I got to love her, and be loved by her.

She told me a couple years ago, that all she wanted out of life, was to touch one person, and make a difference in someone's life. Then she would know that she was a success. The last time that she and I had a long conversation was about 2 weeks ago. And she KNEW that she was a sucess. That she has touched so many people, made a difference in so many people's lives. She knew the end was very near, and she was scared, but she knew that she had accomplished what she had set out for herself as her life's goal. How many of us can say that?

Hug your sisters, your friends, your loved ones. Tell them what they mean to you, and how they've touched your life. Let them know while you can. Life is so short.

Thank you all for your words, and prayers. Knowing that there are people all around the world who are grieving for her as we are is a great comfort to us.

Thank you all

Nancy, Betty & Keith

A little later, her sister posted:

I just spoke with Pam's ex, Nelson, and he filled me in on what happened today.

Nicky, my nephew was with her, around noon. She stopped breathing. He called 911, and did CPR til the paramedics got there. They were unable to revive her, and she was pronounced dead at home.  The police decided because of the circumstances, that no investigation or coroner were needed, and she was left in the care of Nelson and Suzan, her ex-wife-in -law. She was picked up by the funeral home about an hour ago, and Nelson is going down there tomorrow to make the arrangements for her memorial service. Per her wishes, she will be cremated, and I will post the details of the service, should anyone who is close enough to come wants to attend.

I accidentally deleted a bunch of members from her update group today, I am so sorry, my mind is not right at this time.  Please check to see if you were deleted, and I am really really sorry.

I will cross post this in her Journal.

Nancy 
 

Wednesday, 16 November 2005

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

Sunday, 13 November 2005

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? :)

Saturday, 12 November 2005

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!

Saturday, 15 October 2005

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