What's Missing?

Study the two pictures very carefully. There are two things missing in the bottom picture (I already told you about one of them). Can you guess what they are (click the images to see bigger)?

Something Purdy

Lookit this picture of me and Honey watching the sunset on Amelia Island (click on it for a bigger, clearer picture):
Aunt Linda and Uncle Dick took this picture of us and gave us a print in a beautiful frame to take home. I also sent it to a cousin who might try to remove the big pole in the middle of the picture.
Isn't it nice? Made me cry when I first saw it.

Play Nice

Please don't leave me nasty comments anonymously. If you don't like me or what I blog about or how I blog it, then just don't come and read it. If you insist on leaving vague and rude comments, at least own up to it by leaving your name! Jeeesh.

Vision and The Cancer Card

I emailed Dr. Kane last night and asked her about these issues I've been having with my eye sight. She said that the chemotherapy, pain meds and the cancer can all cause these strange effects on my eye sight, thought it's usually temporary. I'm not sure if that means "you'll be able to see straight as soon as you finish all this 'cancer stuff'" or what but I ain't waiting indefinitely to finish reading my great book nor am going to try to hunt down a LARGE PRINT copy of it! She said it's to be expected but that I may consider having it "checked out" to rule out anything serious. Dang. If I need to wear glasses while undergoing this chemotherapy, I'll do it! Thou shalt not deprive me of my books!!!!!!!

I swear to you, downright, I did not intentionally use "The Cancer Card" when I called the optomotrist. I promise I didn't! She was saying to me that she wouldn't be able to get me in for two weeks and I happened to mention to her that I had originally wanted to go to one of those cheapo-eye exam places in the mall since they can get me in ASAP but she said "no way don't do that!" And then she said she could get me in on Friday but I accidentally told her what I was doing on Friday that prevented me from making said appointment! I didn't mean to say "chemo" but it just slipped out! It's just that's what I do on Fridays so it's so easy for me to just say it to people like it's no big deal. She didn't flinch or whine with pity or anything. But as we were settling on an appointment for two weeks out, I asked if she would call me if she had any cancellations between now and then. That's when she said, "Hang on...let me FANDANGLE some stuff around here...we don't normally do that but....okay...and that can go there....and....can you come in tomorrow at two thirty?" HECK YES I CAN THANKYOUVERYMUCH!!!

It is my hope deep down in my heart that she took pity on the problems I've been having with my vision, and not on my chemotherapyatsuchayoungage. I mean, I'm not afraid to use The Cancer Card when absolutely necessary - like that time coming home from the airport last month when we stopped at the gas station to fill up and so I could use the restroom: the cashier lady had the audacity to CLOSE THE ENTIRE RESTROOM while she "cleaned" in there. She was not permitting anyone in while she did this and apparently had slammed the door shut in another woman's face for trying to sneak in behind her just to releive herself. I wasn't going to stand for that NO WAY NO HOW! I pushed that door open and walked right into the bathroom. She immediately started complaining about how she had to clean the bathroom and this was her special time to do it and she couldnt' have anyone in there because of biohazards or some BS like that. I said, "That's fine but you've got customers out there who need to use the other stalls while you clean one at a time." ARGUE ARGUE WHINE WHINE while I held the door open and begged some of the other women who were standing in line to come on in and start using the empty stalls. The cleaning clerk tried to stand in my way but then she backed off. I think she saw my bald head but whatever it was I was SCREAMING at her in my head, "Go ahead and shove a bald cancer patient out of your bathroom...I DARE YOU TO!" Which she did not. And as I pottied, flushed and thoroughly washed and dried my hands, I witnessed her standing in the middle of the bathroom in front of four stalls and a continual stream of women coming in and out of the bathroom. It was hilarious!

*ahem* I digress. That's when I used the Cancer Card. Well, I didn't acutally use it per se but I had it out there ready to go in case she tried to shove me out or call the cops on me or something. You don't need to close an entire restroom just to clean one stall at a time and, really, biohazards? Give me a break.

So tomorrow I get my eyes checked. Horray for me!

So Many Side Effects

I'm pretty sure, when all is said and done, this chemotherapy will have turned me completely inside out and into a mutant. Or at the very least, not human.

So many side effects and symptoms. I can no longer keep track of them. And at this point I have lost all interest in whether it's the chemo drugs or the pain killers or the cancer itself causing all the strangeness. Because really, does it matter?! I still need to take them all. Sure, Dr. Kane said she'd take me off the Xeloda if I start experiencing signs of toxicity again (brown, peeling and painful hands and feet). But that's a chemo drug and what if that's "the one" that's been working?! I certainly wouldn't want to stop taking a medicine that's working on killing my tumor!

You'd think that by now I'd stop experiencing any new and unusual symptoms, right? Apparently, Wrong. Two nights ago I went to bed with extremely stiff joints and yesterday I woke up in the morning with cracking elbows and sensitive knees. How peculiar! I looked it up on the internet and of course such a thing is a side effect of chemotherapy. But did I feel any better knowing that? Not really. And it's not like it's painful or irritating enough to take anything else to help mask it. It's fine. Just fine. Just fine and weird.

And also my eyesight is going wonky. I thought it was just at night or just when I'd be looking or reading in a downward motion - like with my eyes mostly shut, reading the bottom of a page. That is not the case. It's all the time, everywhere. Reading this page as I type it is making my eyes go all crossy and sort of hurty now that I mention it. This makes living a challenge. Can't read. Can't play puzzley video games to keep my mind sharp (or at least to entertain myself!). Can't read the guide on the TV to see what I can boil my brain to next. Can't really drive when my eyes are like this either. My options are very limited. Now you know why I've just been wanting to sleep all day (and then not sleeping at night is the payback, though!).

It's so weird. I wonder what my cool Mutant Name will be when all is said and done here?

Positive Outcome

Starting about Tuesday of last week, I began feeling strong sensations of positivity. You may all think, from reading this blog, that I'm constantly positive in my attitude towards this cancer. In truth, I am not. I'm just like everybody else struggling with this disease. I have bitter ugly moments of dread and dispair. I stay up late nights wondering if I'll die in a hospital or at home. I try very hard to push these thoughts far away from me and I'm usually successful at it. But generally speaking, on a day to day basis, I'm just blah, ho hum about it. Whatever. I can't change anything immediately right now. I'm just practicing my patience all the time.

But last week I read a few of my fellow survivors' blogs and found posts about survival, strength and successful outcomes. This gave me a great deal of hope. I was suddenly flooded with the belief that Yes this could be cured. No matter how rare my tumor is, it can be done. Look at these people! And that feeling somehow grew stronger and stronger as the days went by.

Even though my body ached and overall felt like it'd been run over repeatedly by a large steamroller (ha! as opposed to a small one!), strangely, I felt strong inside, like my spirit felt stronger and more powerful than ever before. I felt like I was going to beat this cancer.

My shrink keeps telling me to repeat my new affirmation, "I am cancer-free and I have a future." And though I usually forget to do it, when I do do it, I feel great. It may just be working.

Thursday, after the lengthy and yucky CT and PET scans, even though my body was worn out and full of radioactivity (i did not glow in the dark...I checked), on the way home I told Honey that we were going to be sitting on the porch one day in about three years saying things like, "Ha! Remember how we were so scared of me dying when I had that cancer?! Can you believe how far we've come?!" I told him we'd be making or adopting babies within 5 years. Clearly, he was very pleased to hear this from me.


After getting the good news about the shrinking portion of my tumor, I celebrated by buying a new phone I've been craving at Best Buy. I signed a new two-year contract with AT&T, thereby planning for the future instead of dreading the possibilities. It seems that whenever I get the hankering for a new phone, my previous 2 year contract with AT&T is within days of expiring! Mere days. It happened last time two years ago and it happened again last week. I don't keep track of these things, I rarely look at my auto-paid bill. I had no idea it was two years ago in July I was eccstatic over my new pink RaZR. Now I'm cuddling with my new Blackjack!

In retrospect of last week, I didn't really TRY very hard to think positive about the outcome of the scans. Mostly, I flooded myself with positive inspiration and felt empowered and in charge. I felt strong and whole. I felt comfortable with my SELF, no matter what. I didn't even consider the outcome of the scans. I've learned just not to AT ALL. No good or bad. ShrinkyDink tells me to visualize a positive image on the resulting scan while I'm in the big bad machine but I figure that by the time I'm all warped up in there, it's too late to make any changes. So I guess by some unknown force of nature, I started working on the positive outcome visualization a few days earlier. Something deeeeeeeeeep deep inside of me told me that even though I felt utterly shitty all over my body, it was working. Somehow I knew it was doing good.

How'd I know that? I wonder...

Hmm...What's the word I'm looking for here....what could it be....?

Oh, that's right, the word is SHRINKING!

That's right, you heard it here first (unless you've been talking to Frank!). A portion of my liver tumor is SHRINKING!!!!

Yesterday we met with my oncologist who pulled up the radiologist's report from Thursday's CAT and PET scans. The report stated that while the majority of my liver tumor remains the same size and density (YAY NO GROWING!), there is a portion on the "left tip" that has shrunk a few millimeters since May!!!!! SOMETHING GOOD IS HAPPENING!!!!! Also, the nearby lymph nodes we've been concerned about in that area now appear less inflamed than prior images have show. One of the main reasons we wanted the PET scan was to look more closely at these lymph nodes to help us decide if they're cancerous or not. Unfortunately the image didn't help us in that way, except that it did show they're less irritated than before. THE SHRINKING IS THE BEST NEWS EVER!!!!!

Slowly, desperately slowly, but SURELY, it's working. This is working!

No radiation for now because the resulting scar tissue during healing can make future surgery difficult.

We're waiting to hear back from the doc who did the chemoembolization on me in March to find out whether that are that shrank is the same area he injected with the chemo. If so, or if it's even reasonably nearby, I'm going right back into that operating room for another treatment. As you all know, it was grueling and a lengthy and very painful recovery but I'm pumped and regenerated and ready for it and have already lined up an old friend who happens to be a reitred nurse to come stay with me for two weeks during the recovery process (She lives in VA).

In addition to the chemoembolization, we are meeting with a surgeon again in two weeks to disuss his opinion on when/if resection can occur. We've actually never met with the surgeons on staff at UCH but they've heard of me through Dr. Kane's discussion of my case at Tumor Board.

Also, Kane will be presenting my case again at Tumor Board in a couple of weeks. We're meeting with that surgeon the afternoon of said board meeting so I'll be fresh in his mind.

Also meeting with a liver transplant specailist me that Frank put me in touch with (frend of a friend sort of thing) to discuss transplantation. If the lymph nodes in the neighborhood do turn out to be cancerous, then transplant is out of the question.

Also, making arrangements to get a direct biopsy of these lymph nodes to get a much better idea o of their state of wellbeing. Hopefully, this could be done during the embolization, though it's unlikely.

Still planning to get into the Integrative Medicine department at the hospital to see about using complementary techniques such as acupuncture, herbals, nutrition, etc. along with current treatment.

So for now, and until I get chemoembolization or some other form of internal poking and prodding scheduled, it's chemo as usual. Since it seems to be working, I'll keep on doing it.

That's the news for now and the immediate future. Despite the good news, yesterday's chemo wiped me out so I felt pretty crummy the rest of the day. Doc has instructed me that, while a daily nap is a good idea, taking said nap late in the afternoon, early evening and for more than one hour is not so adviseable. She suggests this may be affecting my troubles sleeping through the nights. WELL DUH! I didn't have to pay her a $30 copay to tell me that! Okay, I guess I did since I clearly couldn't figure that out on my own!

Oh, speaking of which, my chemobrain has returned with a vengance! I'm forgetting the simplest things like where my sock go, what I was just doing two seconds ago, and do the eggs go in the pantry or the fridge? Is it really necessary to cook food before you eat it? When was the last time I took a shower? Where do peanuts come from? Sure, some of these are slightly phiosophical in nature but the rest are just common sense brain farts.

It is these sorts of perplexities in my life that have caused me to delegate my bi-weekly medication schedule and distribution of pills into my little daily pill boxes to someone else. I've messed it up twice now in the past couple of weeks and, even worse, I didn't even notice two months ago that the pharmacy changed the size of my pain killer pills so I've been taking half of the prescribed amount for over two months now (no wonder I've been in constant pain!). Unrelated to that, though, the last straw was yesterday when I accidentally screwed up my medication schedule in the middle of the night and ended up doubling my pain killer in the morning. Needless to say I was very groggy yesterday. I just need someone to help keep an eye on that for me, for my organizational skills are crumbling right before my eyes. I've got dad's girlfriend Carol lined up to come do it as soon as they return from their camping trip next week. Until then, I got a new phone, Blackberry actually--not the iPhone, and I've synched it with my computer as I created a medication schedule throughout each day. So now the alarm on my phone goes off whenever it's time to eat and/or take a pill (oh yeah, I also forget to feed myself sometimes. Bad for the diseased body). So far (today is day number one), it's working well. I'm able to discipline myself in that respect.

A good friend of mine, who also happens to be my old boss at the school, has offered to come over next week and help me sort through all those insurance statements and medical bills: match them up, see which have been paid already, write letters to those that have not yet, begging for a reduction in the charge, and get it all paid, put away and ready for more to come in! By the way, I found a bill the other day from my periodontist, still paying off some of the dental grafting I had done early last year...the receptionist is always so kind to me and once she found out I was sick, she has smothered me with even more kindness, including a note on my last bill of $122.00 that said "CHARGE REMOVED - You have enough to deal with right now. Hope this helps! Take care!" And Honey also mentioned today that my surgeon who did THE laporoscopic biopsy in November that finally gave us this diagnosis (although it was a sucky diagnosis, we were greatful for actually getting one after three months of suffering and searching!)...he wrote off a +$2000 bill as paid off. No note or anything, he just removed the charge from my account. AMAZING! With this sort of unsolicited generosity in the world, I wonder what sort of power a few poignant words and a simple request for a "reasonable and customary" fee will have over these other bills in question? We'll just try and find out! I'll let you know what happens!

Well, now, case in point from above. It was 5:00 when I started this post and now my eyes are droopy and sleepy for a nap! I must go seek food and energy! Must...seek...caffiene!

Interesting...but gross!

Some interesting but slightly gross things about me:

• I just now counted 22 zits on my face, mostly on my forehead, and they are surrounded by red splotchy irritated skin.
• Never had a hemerroid before now. That was interesting...nothankyouverymuch.
• I have a weird sore on my thumb that has taken over two months to heal! Two months ago, it was all brown and red and gross and doc said to put Neosporin and a bandaid on it twice a day until it gets better. Well, I did that religiously for two months. A few days ago I tried gauze under the bandaid because the sticky bandaid was irritating my skin. That gauze seemed to help. It's getting better, slowly, but surely...I think.
• My hair is growing back. Last week I called myself Porcupine Head. This week I am Fuzzy Wuzzy. I wonder what next week will be like? (Might I continue to lose my hair, you ask? Not really sure. It's all about this one chemo drug I get once a month. I just got it last week so its effects may not rear their ugly heads for another couple of weeks. Doc may always switch chemo drugs too. Don't know. But the scarves are getting itchy and uncomfortable on this fuzziness. If it starts coming out again, I'll shave again. Stay tuned for that excitement.)
• I just went through the pile of mail that collected on our vacation. I opened all bills and mailings and threw out a bunch of the junk. I have yet to open a big stack of bills from the University Physicians. It just scares me. I finally saw insurance statements from April cross the desk this morning so I'm assuming that's when those bills from UCH are from. Not looking forward to opening those only to watch our savings account slip away in the blink of an eye. I'm waiting for Honey and we'll do it together. Cancer is expensive.

That's all I can think of for now. That last one may not seem particularly "interesting" to you but it is certainly "gross" to me! :)

Here I Am

Yea yea, here I am. Not much going on. Just continuing to recover from Friday's chemo. The first in the cycle of three is always the hardest because they use the most drugs on me. I got some suggestions today from my ShrinkyDink that may help me avoid future "issues" from nurses making me cry. I'm game for that, for sure!

So, you haven't heard from me but nothing's wrong. All is well. People still say I don't look like someone with liver cancer. So that's good to hear. I know it could be a lot worse.

Thursday I am having CAT and PET scan done. Results not expected until next week sometime so please don't start asking for them until then. In fact, please trust that I'll put up here any important information we learn from said scans, ok?

Friday we are meeting with Dr. Kane again and taking one of our strongest advocates, Frank Keller. He always asks her the hard questions and demands straight answers a lot easier than we do it. Sometimes Kane skirts around issues but none of us will let her get away with that Friday, as we are seriously ready to consider new options for my treatment (being on the 8th of an indefinite cycle of chemotherapy ain't cuttin' it anymore for me...we're just not going at it hard enough I don't think). So that should be interesting. Stay tuned for those results over the next weekend (although I am also getting chemo on Friday so I may be kind of out of it for another day or two next weekend...please be patient with me).

Thank you to Melissa who has pitched in this week in giving me a ride today to see my shrink and to get some groceries so Honey didn't have to do it! I'm going to start assigning certain people specific tasks if they really want to help out. So if you're in the Denver/Metro area, and you seriously want to lend a hand, please email me and let me know...I'm sure I can find something for you to help me out with! :) The rest of you who live too far away to help physically, keep sending us your prayers and good energies! I really can feel them coming! :)

Feel Yuck

I spent all day (well, afternoon...I got up at noon) on the sofa. Now I have a low grade fever, a sore throat, migraine and achy body. Mr. Honey just gave me some Ibuprofen and cold water. He's gone out to fetch me some OJ, too. He takes such good care of me.

Tomorrow I'll call Nurse Gari and ask him for the go-ahead to start taking the Neupagen shots again.

I can take it. That vacation pumped me up for this. Back to the vicious cycle called cancer.

Back to Chemo

Started round one of chemo again today. This will be my 8th (?) cycle to date. It took 6 hours. I made a new friend and then a nurse made me cry. My new friends helped me work that out with the nurse. Details later.

I'm very tired and drugged up. I'll get back to you soon.
Stay tuned...

Vacation Pictures!

Obviously, with Mr. Honey's many cameras, we took hundreds of pictures on our four-legged vacation. Therefore I cannot show you all of them here. I'll just share with you a couple of our favorites from each leg of the trip (click on any image to enlarge and get a better look):

Amelia Island, FL - The Reunion
Here's Honey walking back from taking pictures with his old press camera at the shoreline (that's Cousin Rick getting cut off on the side there!):

Me and Hannah (Rick's daughter) working on perfecting the art of marshmallow-toasting (fear not, I had to eat a lot of the previous failed attempts!):

Hilton Head, SC - Relaxation Time!
Here I am, in Vera Bradley Heaven! Ahhhhhhh...!

Here is my dolphin friend who came to visit us in the back cove almost every night:

Topeka, KS - Reunion with More Family!
Here's Honey with his grandparents (Grandpa turned 91 in the Spring!):


Cousin Dan's wife Katie just got a new Shi-Ztu puppy named Beasley. This is the first time little bitty Beasley met Uncle Marv's dog Rocky! How cute:
Seriously. How adorable is this little doggie on the table?!

Me and Cousin Dan's kiddos (from L to R: Robert, Suzie and Sally) really enjoyed our chocolate gellato at Olive Garden. Mmmmm good.

Kansas City, KS - The Relay for Life
The First Lap was just survivors. I was in the front row with all the "Newly Diagnosed - under one year" people. Can you tell I'm about to bawl my eyes out?!?

Go team! This is Maggie and Rich's First Light team, consisting mostly (maybe all?) of people from their current church. That's Maggie and Rich over my shoulders in the red shirts (and hey look! That's Cousin Amy's daughter Jordan up in the bleachers! Some local Cousins and Aunt and Uncle came to visit us at the Relay):

Me and my pal Maggie:

And last, but certainly not least, my Honey and me:
We did some really cool tricks with the shutter speed of Honey's camera and those glowy necklaces in the darkness of night. He'll have to show you those in a later post.

The rest of our pictures from the trip is full of scenery and random shots of large groups of people on the beach at the reunion. If you want to see some more of those (maybe you'll see yourself and can be Famous on our blog!), let me know and I'll hook you up!

New Blog, New Post!

Welcome to our brand new blog! Please update your bookmarks, blogrolls, and links accordingly. Settle in and take a look around.

Up top you will see the header that I did not originally create for our last blog but that I customized to fit this cool (and free!) template. Through a few hours and lot of determination and patience, I was able to preserve the cute cutouts of our pictures in the header.

There on the bottom left you'll see two pink boxing gloves. These are the symbolic gloves I use to beat this cancer I have. Mr. Honey doesn't wear them because he's not into pink (he prefers man colors like black and red).

On the right side you'll find LOTS of stuff! Some new stuff like information about us on more of our personal links, the books we're currently reading, our Catster and Dogster sites, and the ability (near the bottom) to subscribe to this blog to keep updated when new posts are up (if you know how to use that button, by all means go for it...but don't ask me for help cause I don't really know how it works!).
And then there are the same ole' links from the old blog, like a great list of other blogs I frequently visit, my favorite pages for cancer information and support, and a bunch of other fun links if you've got some time to kill.

I've been working on this new blog ever since we got home last weekend and I think it's finally ready to be revealed to ya'll! We made this move for several reasons, but most importantly is that it's 100 times easier for me to post pictures through this blog service than the old one. Here, I can do it with just a couple of clicks. And I can upload and change the template design of the whole page if I want to, too. This is where I learned to blog years ago and the lady who designed my old blog stopped designing sites so she's no longer available to help me troubleshoot on it.

Anyway, enjoy this new site! And keep coming back!

Testing

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