Life is never boring when you're living it...

that popped it my head today while I was replying to a blog post at Blog For a Cure. Once I thought about it, it's stuck in my head as a good reply to my youngest daughter because she constantly complains about being bored, and having nothing to do. I realize she's only (almost) 10, so it's kinda a deep thought to point out, but, really just being able to be here to have nothing to do...is a considerable amount of something that you have. It's gonna be my new motto, I think. I've always thought things could be worse, (of course I've had moments of feeling like things are horrible for myself, but I have had a rough time so I guess I can excuse those moments some) But there is always someone out there who is considerably worse off then you. ALWAYS. I may have Cancer, I may have this ugly, masty rash, and scars every where, but ya know, I'm here, I can walk, I can talk, I can eat...(which is a biggie, since I was told in January basically I was coming home to starve until I was gone) I am broke, since I havn't the energy to work, I am stuck at home with no vehicle since I am broke. But, I can reach out to others online, so I'm not totally alone. I'm still here, so that's a pretty damn good place to be.

Oh, What a beautiful morning...

What a lovely day, I have my bedroom window open, letting in some fresh air, and looking at the sun shining, listening to birds singing, It's gorgeous outside today, makes me want to just go outside and spin in the sun like a little kid...(and maybe, just maybe, after I catch up on lost sleep from last night, I might do just that LOL)  So yesterday, I made 64 mini cupcakes for our 4H meeting...and then Emily's other ewe had her baby finally, just one BIG baby boy, his name is Dean Martin (continuing with her classic film stars theme for her sheep names) , At some point today, I have to make  even more cupcakes because Selena has a class party tomorrow for St. Patrick's day so they have to take in green food and wear green, she has been excited for this party for weeks. I had bought her a new outfit last week just for the occassion, she had wanted a green tshirt with St Patricks day sayings on it, but instead I got her a plain white tshirt and a green and white striped skort so that it's something she can wear all spring/summer. She loved it! She got it out this weekend and hung it up in the closet to be ready to wear tomorrow, Silly kiddo lol.
 I really wanted to start a Relay for Life team here locally this year, but, it is the same day as a previous event for my kids, which stinks. But, my oldest daughter and I are thinking about doing it next year. She realllllllly wanted to do it this time, but there's not alot we can do about it. I recommend everyone participate or donate locally to Relay for Life, You can do so at http://www.cancer.org/ ,
So everyone get out there and kick some Cancer Butt!
I want to send  a big hug and healthy healing vibes to all my buddies at Blog for a Cure who are having surgeries, biopsies or testing done this week. And now, it's time for me to sign off and take a nap. Until next time~
I'm still here...

Dear Cellulitis

Dear Cellulitis,
I realize you're enjoying terrorizing my body at the moment, but, I'd really appreciate it if you'd pack your pus,blood and pain inducing swelling and get the hell out. You've been evicted, I am tired of popping pills, of trying to drain the ick out of various swellings on my stomach, I have things to do, life to live and the pain waking me at 4 am every day is impeding that process. So, honestly, just move on, find somewhere else to go. Evaporate already. 

~Til Tomorrow
I'm still here, irritated, sore and tired, but, Still Here!

Not much going on today, just chillin with my youngest daughter watching Charmed DVDs, staring at my bedroom, wanting to get it rearranged and cleaned, but really not wanting to do it right now.  Selena is laying her outfit out for Wednesday , think she might be a little excited for St. Patty's Day?  She is excited for that and her birthday on the 30th, do you know how long I've been hearing the countdown for that day? Since Christmas was just barely over! Yep, seriously.

I've added quite a few Blogs to watch over there ~~> all cancer bloggers, mostly Colon Cancer related.  March is Colon Cancer Awareness month by the way, so wear your blue, post it on your facebooks, twitters, and myspace pages, remind people to get a colonoscopy, and forget that age 50 thing for that. I am 37, I've fought it since I was 32, age means crap...literally in this case! (haha, but no seriously, get the word out!)

So, upcoming plans for this month? Selena and I are going to Red Lobster for her birthday to have lunch, then I dunno what else. Loads of 4H stuff, next weekend is Emily's musical, the weekend after is Share the Fun, we have fundraisers to work, I have tons of cupcakes to make. So March is definately a month where I do not have time for these chemo/cancer side effects and bs! So take that Colon cancer, kiss my ass. This Erbitux is some nasty stuff, I itch, I hurt, the acne rash on my face is wonderfully better, BUT the cellulitis/cysts/infection or what the hell ever it is from it on my gut, arm and legs is so so, some is better, some getting there, almost out of antibiotic though, and I have an appointment at the oncologist soon, but I can't find my card. Gotta look later in my coat pocket, I found the appt card for my Wound Care Dr. for the suture mishap from the stomach tube, that's on March 22nd @ 1 p.m.

My son saw my stomach this weekend, and was mortified, my daughters will sit here and help me with the drainage and TMI alert, ALOt of stuff can drain it's this pus/blood stuff that is really gross. Luckily not much of that left in most of them, I've done well at removing it. It's funny the difference, I think my son is the one maybe I need to worry about more, yet he's the one with the most 'other family' support when it comes time for that, I am hoping beyond hope that I don't have to worry about it for another decade, I've been reading alot of blogs from other Stage 4 Survivors that have been here 5-10 more years once they hit stage 4, and I am hoping that I am as fortunate to add that much more time to my shelf life, just to see them all graduate from high school at this point would satisfy me, well let's adjust that, see them all hit 18 or 19 and be able to take care of themselves or at least be able to start, so I won't worry so much about leaving them young and unable to do what they need to do, or get where they need to be, because make no mistake that is my BIGGEST fear. That they won't have the support they need to get through school, to go to college, to follow their dreams, I know they won't without me here, because I didn't have that, I graduated high school, but never had any encouragement to follow my dreams, hell to even have any dreams for that matter, it didn't exist from my family. My sister can tell you the same thing. College was no option, not even discussed, my brother was signed out of school in 9th grade, and there is a ton of other examples I can make of WHY I do not want them left in my family's hands. And there really is no one else. My only option, should I not get to push a decade, is to hope for my oldest to turn 18 and maybe have her be Selena's Guardian, but, is that fair to her. I want them together, that's my issue, so then my only other possibility is my son's father and stepmom, and I am unsure about that too. If my grandmother wasn't 87 and in the shape she is in, she would be my definate choice. Then there's my Uncle and Aunt, and that's a no, they can't. And that's the end of the list. How did I even get here on this topic? Wow, that was some random babbling huh? Guess it's just some of those things on my mind some days. One of these days, I'll have to start working on my final wishes, what I want to happen at the end, I just can't get there, I've thought about it, believe me, when I was in the hospital in Jauary, all I thought about was what do I want? Burial? Cremation? Funeral, Viewing, Wake? I don't know, I hate fire that is the only thing I think I established, so although I like the idea of my kids having my ashes to spread somewhere...( I thought Ireland to spread some and then they could do what they like with the rest) , I don't like the thought of burning, even in death, so that is likely a no go. I dunno, still have to think on that, when it becomes  more neccessary, I'll give it more thought again. It just seems so morbid, and I think deep down that if I don't get all my ducks in a row, that I can keep that inevitability from coming to be? Who knows why my brain works the way it does? Now I've rambled onto another uncomfortable subject, maybe I better leave this where it stands before I think myself into a mood that is not conducive to staying positive.
Til tomorrow~
I'm still here!

Random Venting...

So, I was just doing my 'new rountine' over on my favorite site- 'Blog for a Cure', which consists of checking all the new posts since the day before since I wake up at 4 am every morning now, it's become  my daily thing. I read them ALL and try to either comment on them or send a cancer punch to the person's cancer. Or just 'like' their post if I have nothing to say, one I read this morning, got me thinking about one of my own pet peeves in dealing with this damn Cancer and being a 'patient' again as opposed to just a 'survivor', I'm both I guess, but here's my irritation, why, Why. WHY do friends, family, and acquaintances expect the patient to be the one to hold their hand and make them feel better? Why is it MY job to call and talk to you every day? Maybe I'm tired today...maybe I'm having pain, maybe I just don't like talking on the freaking phone (me- I HATE talking on the phone), maybe I'm doing something I like doing and don't have time to waste coddling someone else, like for instance, I am NOT going to commiserate with you because you had a flippin wart frozen off your lip and they didn't give you narcotic pain meds, nor will I feel sorry for you that the dentist only prescribed Ibuprofen to you after pulling a tooth that wasn't even infected. Sorry, wrong person to come to for sympathy. I had 2 tension sutures dug out of my gut that had ate there way into my flesh due to crappy medical care a few weeks ago with NOTHING but a washcloth given to me to squeeze, bite, whatever...I've had numerous surgeries the last few years, I have a rash from chemo that is extremely painful just moving certain ways or if anything touches it in places, so NO, sorry, I don't think I can simper with you and say ohhh poor baby about your stupid freakin wart, try having a softball size tumor removed with part of your colon or a small basketball sized one removed  with an ovary along with all your female organs, hell try giving birth to 3 kids that each weighed over 9 lbs, then get back to me about your pain.

That crap irks me, there are people out there much worse off than ME, so I don't whine, bitch or moan much about my issues/pain/illness, I vent occassionally, but mostly it's a " woke up at 4 am  with an OUCH again, took meds, time to blah blah blah..." type update, or as part of my status on Facebook...so when someone who has NOTHING wrong with them, whines about every little fart they make, I get very annoyed. And when people expect me to make them feel better about my health issues? Um that one is annoying too, it's NOT the patient's job to console everyone else around them. MY KIDS, yes indeed, but the rest of y'all are on your own and capable of finding your own way to deal. So this brings me to the post I read this morning...Actually, I am not even sure this is a legit story, because I find it hard to fathom in this day and age  and having had the crappy medical mishaps I've personally had so many of myself, that there is ANY dr out there who does not tell a patient, but tells her parents and husband that she has 6-8 weeks to live. I'm sorry, I just don't see it, maybe I'm wrong, but I know that my dr's are always very informative, yes, mine had to be asked to give me a damn time limit, because he doesn't like to do that, but he did it when I asked, he is wrong... (  ;)   ) but he told me single digit months when I asked him in January. There's just so much about the person that I was reading about that sounds kinda ehh...like is this even legit? The person blogging the story is her 'best friend' of 25 years talking about this woman with intestinal cancer (I assume she has colorectal like I do) and how her parents and her husband are bickering in front of her in her hospital room, how her husband is making her not take her pain meds like she is supposed to (though from what she types- I'm not sure that may not be a good call as it seems they have her doped up to an incoherent state?) I don't know, I read her latest post from last night and it made me think something was weird, so I went and read all the posts from this person, it just made me wonder if this person's story was true. I hate to think people fake these things, but, the reality is, they do, it's sad and I wouldn't want the Karma they rack up...but I know it's a fact, because I have a brother, who every time I've gotten sick, had a set back, etc, has come up with some new malady he is dying of, it's been AIDS a few times, a lesion on his liver, a lesion on his brain, that was in December. Then this last time, he had a wart on his lip and swore it was a tumor to my mom, who FALLS for all this bs...His only malady, is that he is a self medicating (insert alcoholoc) bipolar manic depressive, who has always had all the attention on him, so when anyone else is garnering any from him for any reason, it's time to come up with something else. When my sister and I were pregnant and had our kids, when I've been sick, he always comes up with something. He tried to blame a brain lesion on his mood swings, sorry buddy, you were like that at birth, you were BORN bipolar, You have not had a brain tumor for 31 years  making you nutty. That's just YOU. Personally, I'm sick of it, and I don't mince words, like I've told him the past 2 days, don't whine at me about your pain, I don't want to hear it, you know NOTHING about real pain, nor do you need narcotics for every twinge. You're just trying to self medicate, grow up and get some help. I have no help for you. Nor do I have any tolerance. This is one of the things I am eliminating from my life, I don't HAVE to deal with your bullshit, and I'm not going to.

Well, got that out, and oddly enough, now I am having some pain in my back lol. Ah, well, it'll go away in a bit.
~Gwen

I've become addicted to another site...

I really like   Blog For a Cure...for one, people are actually reading and responding to what I write...daily. It makes me feel like someone out there is listening, so I think that This blog will be saved for occasional vents and fluff posts about things  like news commentary. Maybe poetry or stories, recipes, things that don't matter so much. i will leave you for now with a copy paste of my last 2 days posts at blogforacure.com

Tuesday
This skin infection is on my nerves, The bad spot on the inside of my right elbow is getting better, but, the spot on my right breast and on my left knee now appear to be worse, though I had thought the knee was getting better. I probably should have called the Physician’s Asst today, but I really didn’t notice they were worse until I changed bandages this evening and realized that What I was seeing was not like damp skin, but actual infection pockets, my breast was really bad, it has made a huge hole, at least I got most of it out, I will call her tomorrow. Give the antibiotics another 12 hours, And they are looking better now that I worked on them myself tonight than they were. It just is frustrating because chemo was going so well, now I am concerned that I am going to have to cut it back once this clears. It’s like something keeps popping up this time to prevent me from getting adequete treatment. Anyway, pain meds kickin in…sleepytime. Night.

Wednesday
I woke up at 4 am this morning because I moved the wrong way and OUCH that one swollen area on my side from the cellulitis yelled at ME. So I took some pain meds at 5:30 am, fed the baby lamb, got my 2 girls up to get ready for school, and now that the meds kicked in , took a look at it and the swelling HAS gone down, so the antibiotics with the heating pad maybe they are working! That makes me much happier. And my stomach is growling so that’s good, the day before yesterday, I really had no desire to eat and that concerned me a bit. Especially since I felt mildly bloated too, which usually is a precurser to finding out I’m blocked again. I am pretty sure it was just Cancer Anxiety though, because everything seems to be in good working order. Everything is moving well and when it should. My arm still looks better, my knee is getting better, my breast? That one is bleh, but it IS better. I think it just looks so gross to me because of where it is and the skin is more tender/sensitive there.







I’ve been slacking on getting my website completely up and going, well it’s up and going, I just have slacked on getting the word out and finding members. Anyone have any ideas? I don’t want to advertise on other sites you see. It’s a free site, a support site with message boards for moms dealing with serious illnesses. I started it before I found this site because I thought it would be great for moms who are dealng with their illness and trying to parent. It kind of stemmed from my own confusion on what do I tell my kids now,and how issues that I’ve been having since January this year. Now, my kids have known about Cancer since before I was dx in 2005, because we used to do our local Relay for Life event with our first 4H group (the leader is a breast cancer survivor and another member is a thyroid cancer survivor), then I got dx and we participated the next year with me doing the survivor walk. I havn’t done it since. I think the luminaries stared to add up too much maybe? So they have the awareness, they’ve been through me being close to death several times now, the first time being with dx I was so sick they had to keep me 2 weeks in the hospital before they could even do surgery. Then the following year, I had the stroke…then I’ve had 2 seizures in front of them, then the cancer popped back up and I was sent to UVA twice, so they’ve dealt with alot of seperation from me already, and seen alot. But the dr telling me in January that I only have single digit months left to live and that I should make arrangements and let my kids know was a huge blow to me. How does one do that? What do you say? How do you even bring it up? Especially when you FEEL FINE? When there is nothing to indicate that you are sick except for the side effects from the chemo?






As it happened, a few weeks ago, my oldest daughter was hanging out with my youngest daughter and I in my room one night and she mentioned something about her friend’s grandfather who has/had cancer and how badly her friend sometimes treats him and I don’t remember what else, and I used that to bring up that when someone has cancer, you really never know, and I told them that the dr’s said I didn’t have alot of time left BUT that there was NO expiration date on my butt and that I felt fine and do NOT intend to go anywhere until I am ready, that they really don’t KNOW for sure when anyone is going to die, everyone is different. My oldest daughter cried, but, she pulled herself together and agreed with me, my youngest, had, alas, fallen asleep before I started talking and I don’t think heard a thing I said (figures), My son, I still havn’t talked to yet, I dread that one, He’s very worried about parents leaving, his dad has had a few health problems too and had a mild heart attack, so he worries alot anyway.LUCKILY, he has a great step mom, and I know she would move heaven and earth for that boy, and so would his other grandmother. That’s my main concern with my girls, my son has other people that I feel comfortable taking care of him when I am gone, my girls? Not so much.






I am ALL they have, their father is not involved.Never has been. I am not comfortable with my parents having control over their lives. My mom is a control freak among other things and I do not want her dictating their lives. Which is what is making me so determined to try to push through until they are all at least 18.That’s 8 more YEARS,not single digit months. So, I have some dr defying to do.


Now, off to go read some other blogs...
Night.
Gwen

It's Monday... And just wanted to share...

This fantabulous new site I found yesterday! Blogforacure.com ... I registered there, it's an entire community of cancer patients and/or caregivers/survivors blogging about cancer and it's effect on their lives. I will add a link to my favorite sites on here. I highly recommend it, they have it so you can find others with the same kind of cancer or the same stage, in the same state as you. Great idea!

Airmid's Cottage is slow to start, I am having problems getting members. I think it's a catch 22 situation, there are no members so no one wants to join thinking that no one will ever post. I did get the domain up and running yesterday though, airmidscottage.com . And the email addressis ready to go help@airmidscottage.com Remember the site is for moms dealing with ANY type of illness, not just cancer patients.

Now my question of the day...why is it that it's conveniently forgotten by some how the economy in this country got to where it is today after 8 years of ill spending, yet those same people expect it to be fixed in a year. I just don't get it. That and Healthcare reform, I keep seeing Republicans say the public doesn't want it, but everyone I know or have seen thinks it's a great idea and do want something done about it. I think they just don't want a bill passed that is now less than it started out to be. As an uninsured Cancer patient on Medicaid, who will NEVER be eligible for ANYTHING other than government provided healthcare, I can tell you it needs reforming. My insurance is provided by the state through Anthem Healthkeepers and let me tell you that SUCKS. I have to wait WEEKS for every single procedure and medication, prescription wound care supplies to be approved, which means I go Weeks WITHOUT things I need for my health, because I am too sick to work, which means I am too broke to buy things out of pocket...but i have, thanks to my tax refund from this past year, matter of fact over half of it has gone to pay for medications, ointments, creams, bloodwork and appts that they would not approve. IN FACT, I have a mediport and I have to have bloodwork before every treatment, it has to be done that morning. My insurance WILL NOT PAY fr my oncologist's lab to draw and process it, they want me to go to some random lab who does not draw from ports, sooooo my Oncologist's office is eating the cost of the bloodwork every week now and doing it anyway and not charging me. It's really beyind ridiculous, these people who make up all these red tape rules obviously have n clue about what is neccessary or important. Cancer Patients end up on alot of medication stemming from side effects caused by their treatment and the disease itself. Anti-nausea medication, pain medication, heartburn medication blood ressure medicine, all kinds of things to keep your body organs functioning normally because after a while things don't want to work right on their own. Ointmints for rashes, antibiotics for infections, steroids for inflamations, things you NEED daily, things that you can't wait for but when insurance takes 2 weeks to approve everything you end up waiting for and sometimes suffering because of it. So an overhaul of healthcare/insurance is VITAL. Oops got on a rant, gonna just leave this as it is for now.

~Gwen