Colon Cancer Sucks Ass

Boxes, Boxes and More Boxes

2012-01-19T07:17:00.000-08:00

I had to laugh when I read Mandy's post about the box that Christine "decorated". It reminded me that Christine was a hoarder of boxes. I'm not sure how that came about. It could have been from the days when I had worked from home and shipped almost daily. We were always scrounging for boxes. Anyway, when she shared an apartment with Jim and Robert, there was a linen closet in their bathroom that had no shelves. She took over that closet and filled it two thirds of the way with folded boxes. On top of those boxes they stored their toilet paper. It was quite the site to see. Jim had trouble understanding why she wanted to save those boxes and was always telling her she needed to get rid of some boxes but she refused. Because he bugged her about it so much she told him that he would never get to use any of them. Now thats tough love!

Jan
Christine's mom

Missing Empty Boxes

2012-01-16T13:39:00.001-08:00

Hi All!

It's Mandy again. Been a long time, but believe me, Christy is often on my mind even still.

When Christy graduated from St. Kate's in 1999 and moved into her first grown-up apartment, her friend, Jen Bender, hooked her up with some pretty sweet boxes from the bookstore. Those suckers were a perfect size and could take quite a beating because they originally contained text books. Christy held onto those puppies over the years, even when she moved to L.A., and she shared some with me in 2000 when I made my transition into adulthood. I, in turn, also saved those precious boxes to be used over and over again for my subsequent moves.

Those boxes, along with memories, also contained multiple markings from all our many transitions through life (i.e.: "books;" "fragile;" "kitchen stuff;" etc.). There was one box that Christy had decorated during a late night of last-minute packing which was particularly awesome. On it she had drawn a stick figure of herself exclaiming: "It's Me!" I loved this box. It always made me smile when I saw it.

The problem is, now I can't find it! I've looked everywhere, but there is no stick-Christy to be found :( I must have lent it to someone at some point...and what are the chances they were pack-ratty enough to have saved it? Highly unlikely. So, here I am missing a stupid, cardboard box. Craziness.

Life lesson? Life does go on after loss, but it sure can take some strange, twisty turns down memory lane;)

Miss you always, Christy.

~Mandy

"What's Up Your Butt?"

2011-06-18T13:07:00.000-07:00

One of the greatest challenges faced by colorectal cancer advocacy groups is getting people to talk about their poop tube and the somewhat embarrassing symptoms that can be associated with a tumor growing “in there.” Not to mention trying to get people to believe that they not only need a colonoscopy, but that that they actually want to initiate the whole process of bowel “cleansing” and getting scoped via their “back door“ (so many euphemisms, so little time *sigh*). Let’s face it -- this is a dark place where people dread to tread, yet alone talk about. So, advocacy groups have to get creative…

Humor is a great way to break the ice in almost any uncomfortable situation. If delivered effectively, it can lead to laughter…and laughter just makes everything better and more bearable (at least it does in my world). Here are a few great examples of this tactic:

1) Public service video by Rose Hausmann (an amazing survivor), "It's Easy" @ http://www.friendsofrose.org/roses_video.html

2) Ms. Butt Meddler's hilarious video, "Lookin' Up My Back Door" @ http://www.youtube.com/watch?v=wmKnf7QhuSo

3) The attention-grabbing "Cover Your Butt" T-shirts that Fight Colorectal Cancer advocates wore around D.C. for 2010's Call On Congress:

Many of you have probably heard about Gotcancer.org’s recent add campaign that has had mixed reviews, and whose billboards have actually been banned in some cities. The controversial ads feature an individual wearing a cross between a pained and quizzical expression next to the phrase: “What’s up your butt?”

Party poopers say it is in “poor taste.” Me? I think it is awesomely clever. It at once makes me giggle and wonder what the ad is referring to…it makes me want to go home and google it to find out what they think might be up my butt exactly.

As a hospital nurse with a warped sense of humor, my immediate thoughts upon seeing the images of the billboards went to strange objects that patients have swallowed or placed up their own butts (my favorite was one of those super tiny library pencils -- don’t ask me why). Then I thought maybe it could be an ad for some new laxative that is proven to effectively treat constipation or, perhaps, anal-retentive natures. My love of the “X-Files” led my wandering mind down the path of alien abductions and those uncomfortable probes they use…

The colorectal cancer advocate in me, however, knew exactly what the billboard was asking, and thought it was brilliant. Maybe there could be a subtler or “classier” way to discuss colorectal cancer, but cancer is never respectful in its introductions to our bodies, so why do we have to be? Besides, any discussion on this topic is good; any publicity about colon cancer and its prevention is wonderful. Am I right?!

What are your thoughts? What ideas do you have to creatively educate the public about colorectal cancer? What would be a better way to grab people’s attention without them feeling the need to instinctively clench their butt cheeks and run the other way? How do we open the door to the "back door"?

*GRIN*
~Mandy

WWCD?

2011-06-05T10:39:00.000-07:00

I have struggled this past year with posting on Christy's blog. On one hand I want to keep it "alive," but on the other hand I feel like my words don't quite live up to those of Christine. The following is a common conversation I've had with myself for a while now:

Mandy: Of course your words and thoughts don't live up to Christy's, Mandy! Nobody can replace the original person that you love and miss so much -- duh.

Me: But I do want to honor my best friend's memory.

Mandy: Well then write for cripes sake!

Me: But it's not my story to tell.

Mandy: Maybe not, but her story has definitiely become a big part of your story -- her friendship and loss have had a major impact on your life, after all.

Me: You have a point. My life is better for having known her...but reliving the loss is so hard.

Mandy: Maybe that is what is really keeping you from telling Christy's story -- grief?

Me: Probably. I still miss her every day. When something bad happens, I want to call her and tell her about it. When something good happens, I wish she were there to share it with me. Damn it! Why did she have to leave us?!

Mandy: It is not fair -- it never is.

Me: And Christy was so right: Cancer does suck ass!

Mandy: As I see it, you have two choices: 1)Continue sharing her story; or 2)Hold your memories inside, and keep them private and close to your heart. The second option may not help anyone else, but it may bring comfort to you.

Me: You make option 2 sound so selfish when you put it that way...

Mandy: Maybe because it kind of is, but nobody would blame you for grieving in your own way.

Me: I can't help but wonder what Christy would want me to do. Maybe I should make a bracelet with "WWCD?" inscribed on it -- ha!

Mandy: Now, we both know Christy would love that! :-)

Me: Look at that! We made me laugh!

Mandy: Laughter is always good. In fact, Christy always said it was the one single thing that made her feel "normal."

Me: Out of respect, I will leave the obvious response to that last comment alone ;-) Maybe I could tell some of her funnier stories? To make others laugh?

Mandy: You could give it a try -- never hurts to try. Although, it does hurt to laugh sometimes :-)

Me: You do realize that not only am I talking to myself, but I am also basically texting myself. Mortifying.

Mandy: Yes it is.

Me: Gee, thanks, Mandy.

Mandy: No problemo. That's what I'm here for, girlfriend! *SNAP*

Me: Christy? Is that you?....

Happy Birthday

2011-06-02T10:48:00.000-07:00

Happy Birthday Christy,

Thirty four years.......I remember the first time I saw you. You looked just like I had dreamed. You were such a happy baby. You first smiled when you were just a few days old. My sister told me that it was gas but I new it was actually a smile because when you smiled, your whole face would smile. When you were old enough to stand in your crib, I would come in your room in the morning and you would bounce up and down and just laugh. One of your favorite things to do was sit under the kitchen table. I'm not sure why but it always made you laugh. We went on a camping trip for your first birthday. You were still learning to walk on your own. So your dad and I spent two days bent over holding your hands so you could walk. On that trip, you were up and ready to go at 4 AM because it was so light outside. You brought so much joy into our lives.

We are staying at the lake right now and we had some interesting things happen early this morning around 3 AM. First your dad's phone played music twice, so he got up to check his phone and there weren't any call or messages. Shortly after that my phone played music three times so I got up to check my phone. Same thing, no calls or messages. Then this morning when I got up there were M&M's laying on the table. When your dad got back from golfing, I asked him if he had put the M&M's on the table and he said no. Now I'm not saying you did this but you have to admit that this is very strange and something you would get a great kick out of doing. I can almost hear you laughing. If you did do this, thank you. It has made today much easier.

I miss you so much.

Love,
Mom

CHRISTMAS 2010

2010-12-28T15:23:00.000-08:00

I have been thinking about posting for months now but never seem to be able to get beyond thinking. This has been a difficult year. A lot of firsts since Christine passed away. We spent her birthday in Wisconsin with family and went back again for the anniversary of her passing. My sister, her husband, Ernie and I visited her grave. We talked. We laughed. We cried. My brother-in-law asked if we planned to dress up to go to the cemetery and of course we didn't but then I thought about what Christine would have said. If you knew her very well, you know she would of said "Of course you should dress up!" I could almost hear her say it and it made me laugh. Sorry, Christine, we didn't dress up!
I thought a lot about Christmas during the fall. Christmas was always our time together, Christine and I. I thought this year would probably be easier since this was our second Christmas without her but I was wrong. I think maybe last year I was still so numb and just going through the motions This year it seemed everything made me cry, especially the music. I remember when Christine was younger and would challenge anyone to name a Christmas song that she couldn't sing at least the first two verses. She loved Christmas music and would play it year round. She was allowed to play it anywhere in the house from Thanksgiving through New Years but the rest of the time she had to play it in her room and she did!
I don't know how it started but we had this little competition going on between us to see who could e-mail first on the 25th of each month to say only 11 months till Christmas and so on. One time she e-mailed me on the 24th and said only so many months till Christmas Eve. She really amused herself with that one!
We put up a small angel tree in our living room. We put all of her angel ornaments on it. My sister had given her angel ornaments for many years and now other family members are giving us ornaments for the tree. My sister found a beautiful one this summer that has a place for her picture. I used a picture of her that I found from her trip to Savanna that she and Mandy took in the spring. Last Christmas we gave all our family members and special friends a pewter angel ornament in her memory that said "Those we have held in our arms for a little while, we hold in our hearts forever." We also found a couple of angel ornaments in her things that I think friends might have given her after she got sick.
I always enjoyed shopping for her for Christmas. We would tell her and Jason that they could put anything on their Christmas list but it didn't mean that they would actually receive it. Sometimes there were some real whoppers on there! That was her sense of humor! She always loved all her presents. It was hard shopping these last two years because I would see things that I knew she would have really liked. I did a lot of my shopping online. It was easier.
We spent Christmas in Nebraska for the first time in many, many years. Jason and his family weren't able to go to Wisconsin so we all stayed here and maybe have started a new tradition. Our granddaughters are three and four. So you can imagine how much they love Christmas or should I say presents. They were ready for Christmas back in October when we had our first snowfall. Their mom said that they were jumping up and down and saying "It's Christmas! It's Christmas!" How cute is that!
When Christine was two we gave her this huge teddy bear for Christmas. It was a lot bigger than her. At first she wouldn't have anything to do with it but eventually she "grew" into it and it probably didn't seem so frightening to her. I think she still had that bear when she was in high school.
So another Christmas has come and gone. We survived.

Jan
Christine's Mom

Time Warp

2010-10-25T14:23:00.000-07:00

Kristen here, finally chiming in...

If Christy were still living in her apartment in LA, one thing I know we would be talking about constantly is GLEE! She would have loved the show so much, with its fabulous show tunes, fun dance numbers and hilarious dialogue. The show has made me think of her even more this season, as the Gleeks sing numbers from the 90s and other nostalgic songs.

When we were teenagers Christy and I used to drive around Bellevue, NE, bopping along to whatever was on the radio or mixtape we had in the cassette player. We loved entertaining the people stopped next to us at red lights with our car dancing, and one of my favorite things was Christy's rendition of "What If God Was One Of Us." I wish I could describe it for you here, but it loses something in translation. Suffice to say she always cracked me up with that one and I still get the giggles thinking about it. Hearing it sung during the "Grilled Cheezus" episode brought simultaneous laughter and tears as I tried to explain the story to my husband and replicate her awesome dance.

Another of her very favorite shows in high school was Rocky Horror Picture Show - she loved, loved, LOVED the character Columbia and especially loved the song "Time Warp," which was harder to car-dance to but extra fun to act out anywhere there was a tape player. When I saw the preview for this week's episode, I couldn't help but think how much she would love this too!

Bittersweet Happiness

2010-10-19T19:14:00.000-07:00

I haven't posted in awhile, so I thought I'd just write a little note.

It's been a week since I, along with the rest of the world, was glued to the live footage of the Chilean miners' rescue. Witnessing each man as he was reunited with the Earth's surface and his loved ones (even mistresses, I suppose) made me practically giddy.

I think it was seeing how those men survived over 2 months in a hot, dark tomb one-half mile below the surface -- the camaraderie, the compassion, the faith, and the drive to survive. It was also witnessing all of the measures taken "up top" to bring about their amazing rescue -- the epitome of true team work and a glimpse of humanity at its best.

The odd part is that I found myself a bit envious of the rescuers and the families. When they found their loved one, friend, co-worker in dire circumstances, they were able to pull together their brains, talent and resources as a community and save 33 lives.

When Christy was diagnosed, her friends and loved ones rallied around her to offer whatever support we could, but we were helpless in that the rescue effort was all up to Christy, chemo and fate. If only we could have built a capsule to release her from cancer's grasp...

~Mandy

Afraid of Forgetting?

2010-08-17T14:24:00.000-07:00

I like to think of myself as a good and caring nurse. I also consider laughter to be great medicine (a belief reinforced by Miss Christine). So, I am hoping that my patients find it funny when I ask them if they remember why they are taking their Aricept or Namenda pills (medications sometimes used in the treatment of Alzheimer's). At least I hope they are able to giggle a little at the irony of the situation when they cannot recall what pill they are taking to improve/maintain their memory ;-)

I need to be clear that I do not make it a habit to "pick on" my memory loss patients -- in fact, lately, I have become more and more certain that I will be joining their ranks in the future. Although, if I continue on my current path of forgetfulness and absent-mindedness, I should manage to fly under the radars of my loved ones before they ship me off to a nursing home ;-)

I worry mostly about forgetting my most cherished memories. Memories and images of loved ones who have passed are particularly important to me -- stories that I can continue to share with future generations and keep each unique spirit and personal impact in this world alive and well.

They say that time heals all wounds, but it also seems to make the past a bit hazy. Thankfully, it seems to have a way of erasing some of the really bad stuff and bringing the happy memories to the forefront. But I still find myself wishing I had written down the finer details -- smells, sounds, images, quotes, places, dates, times, etc.

I am afraid. Afraid of slowly losing my friend -- again. Oh, I know I will always love her -- I know that the ginormous imprint she has made on my life even time cannot completely erase. But that doesn't change the fact that I can't remember the funny thing she said that day a few years ago that made me choke on my coffee on the way to Target. Or the reason why, exactly, she felt the need to throw her stuffed animals at me every morning when I was sleeping on the floor of her room. Or the secret ingredients that made her pie crust and chocolate chip cookies so yummy...

There is the other side of the coin, too. That being that I find myself thinking about Christine and others who have passed when I least expect it. There is a poem written by Edna St. Vincent Millay that perfectly expresses this phenomenon:

"Time does not bring relief; you all have lied
Who told me time would ease me of my pain!
I miss him in the weeping of the rain;
I want him at the shrinking of the tide;
The old snows melt from every mountain-side,
And last year’s leaves are smoke in every lane;
But last year’s bitter loving must remain
Heaped on my heart, and my old thoughts abide!

There are a hundred places where I fear
To go — so with his memory they brim!
And entering with relief some quiet place
Where never fell his foot or shone his face
I say, 'There is no memory of him here!'
And so stand stricken, so remembering him!"

Ah, Memory -- such a fickle friend!

~Mandy

This is a short one :-)

2010-08-01T15:09:00.000-07:00

I was thinking about Christy again -- shocker!

Christy actively fought her cancer for 4 years with multiple surgeries, almost constant chemo, and radiation.

She also fought it by not giving in and giving up -- she pursued her dreams, continued her education, traveled, advocated for others with cancer, developed wonderful friendships, and maintained her relationships with family and friends all over the US.

I remember her saying to me one day: "If I ever get killed by a stupid car while crossing the street, I'm going to be pissed!"

So, look both ways before crossing the street, folks! The girl had a point!

~Mandy

In Rememberance...

2010-07-18T09:28:00.000-07:00

Christy passed a year ago today, and her brother sent out this lovely message to the followers of Christy's Facebook page, "We Support Christine Niemi & We Want to Kick Colorectal Cancer's Butt" (feel free to check it out -- it's still there):

"The last four years have been a tough journey for Christy. When Christy was faced with the toughest road someone can travel, she accepted the challenge head on and decided to make a difference. There is no doubt in our minds that she touched more people than she will ever know.

A quote from Christy that will allows stay in my mind came when she was diagnosed. She said, "I may not have control over what happens in my life, by I do have control over my attitude." Christy lived this statement every day for the last four years. Her approach to life and strong will has touched the hearts of many.

It is with great sadness, but true admiration, that at 7:45 this morning, Christine Niemi passed away. Please keep Christy in your prayers and never forget what she has taught us all.

One request Christy would have is to keep fighting to make people aware of Colorectal Cancer. This became her passion over the last few years. Now it is up to us to pick up where she left off and continue making a difference.

Thank you all from her family for your thoughts, prayers and wonderful comments. It is a true comfort to know how many people truly love Christy.

A donation page has been set up on Christine Niemi's behalf on the Colorectal Cancer Coalition's website. Please see the link listed below or click here: http://advocacy.fightcrc.org/goto/christine

Thanks for all of your wonderful support."

~Jason Niemi

ER: The Waiting Room -- TV's Next Hit Drama...

2010-07-13T06:00:00.001-07:00

One year ago this week, Christy was lying in a hospital bed in Omaha, surrounded by family and friends. It was difficult seeing her body deteriorate; but at the same time, her spirit seemed so strong -- almost illuminated. It was such a blessing to share that time with her and her family -- to be able to say all the things I wanted to say; to share memories and stories that were so significant and defining in our friendship.

I was recalling a trip to the ER in the late summer/fall after her initial emergency surgery in 2005. I had gone out to LA to stay with her. I arrived on a Friday, and being a nurse, I was very curious to take a gander at her abdominal incision (what can I say? I love looking at that kind of stuff!). She had a few open areas that were being packed 2-3 times per day so that the wounds could heal properly -- from the inside to the outside (her friend, Abby, in LA was doing the dressing changes for her everyday -- Christy had such amazing friends out there!). When I went to change the dressing, it became very clear to me that she had an infection. I believe my exact words were: "Ummm...that looks like purulent drainage." Christy correctly assumed that I was NOT complimenting her on her healing process -- her response? "Crap! That doesn't sound good. If we call my doctor and you tell him that word, I'm going to have to go to the ER aren't I?"

Well, we put off the inevitable, and waited to call her surgeon on Monday morning. The minute I mentioned the word "purulent" there was no going back. We left for the UCLA ER in the late morning. We did not leave the hospital until the next morning -- a full 17 HOURS later (about 13 of those hours were in the waiting room)!!! How did we pass the time? Well, we made up stories and diagnosed the other patients and their families who were also waiting -- some more patiently than others. Suffice it to say, we "met" a lot of interesting characters: the LA Golden Girls (minus Sophia); the guy with knee pain who kept playing "drums" and singing rock ballads; the girl who Christy thought looked "sicker than I am", but who turned into a total loony tunes when she was finally seen and the doctors wanted to admit her to Psych; and the schizophrenic homeless lady who insisted she knew Christy, so she sat next to her on the same bench, and then wet her pants -- the lady, not Christy (just to add a little insult to injury after a hellish night of waiting to be seen, Christy almost got peed on!).

About 8 hours into our ER "experience," I was able to convince the triage nurse to at least give Christy some pain medicine. After all, she hadn't brought anything with her, and she hadn't sat up for more than 2 hours at a time, as she was still recovering from a major surgery. I also reminded her of Christy's diagnosis, and threw in a little guilt trip along the lines of, "Every moment is precious, and shouldn't be wasted, when one is faced with such a diagnosis." I also kindly reminded her that Christy's surgeon had told us to have the ER notify the "Pink" surgical team upon Christy's arrival (we liked to imagine them wearing hot pink and entering the room doing a musical number -- hee!). The nurse explained that they had been tied up in the OR for hours treating 3 gunshot victims. When I relayed this last tidbit to Christy, it caused her to really ponder the irony of the situation: "You know, if I went out and committed a felony right now, I wouldn't have to wait like this. I'd have health coverage! This is so frustrating!" Sad, but all too true.

When we finally were taken back into the ER, we still had to wait in the hall, because the rooms were filled up. A doctor finally found an empty stretcher, and as I held up a sheet (for privacy - HIPPA at its finest!), she removed Christy's dressings to assess the wound. The doctor actually gasped a bit when she saw the infection, and then proceeded to profusely apologize for making Christy wait so long. Then Christy's resident surgeon from the "pink team" saw her waiting and was shocked. He said nobody had informed them of her arrival, so they had figured that she hadn't come in, or that she'd given up waiting and gone home (we were both asking ourselves why we hadn't done just that for the next 4 years!). In no time at all, Christy suddenly had a room, a CT scan, and an okay to go home as long as she had a nurse staying with her (having a nurse friend has it's benefits sometimes, I guess)!

While waiting for her walking papers, we dimmed the lights so that Christy could try to get a little rest. I was just sitting there, in the dark, when Christy suddenly asked my why the ER doctor had reacted so strongly when she assessed Christy's wounds. I explained that her wound had actually "bubbled" when the doctor pressed on her abdomen. I thought Christy had fallen back asleep, but then, with a giggle, she asked me if I thought she could make it bubble again by plugging her nose and blowing really hard. Once a goofball, always a goofball! Even after all that she had been through during those 17 hours, her sense of humor was still intact (thinking about it now still makes me shake my head in amazement). Hearing our giggling, the doctor pulled back the curtain and asked us if we were having a slumber party camp-out. He jokingly told us to quiet down and go to sleep.

The most important part of the night for Christy was when the ER resident came in to apologize for misdiagnosing her with a kidney infection and just sending her home on antibiotics, when what she actually had was a perforated bowel from a tumor (she ended up having emergency surgery the very next day). I believe his exact words were: "Do you remember me? I'm the dumb ass who sent you home with pyelonephritis. I am so sorry." Christy's response: "Well, they did tell me that if they had found the tumor ONE day earlier, that it probably wouldn't have spread." Once a smart ass, always a smart ass! When the resident finally understood that Christy had forgiven him, he humbly left the room with a very sincere "take care." That simple apology allowed Christy to forgive and move forward.

On the ride home, Christy looked at me and said that "purulent" was a 4-letter word, and that if I ever said it to her again, she wouldn't let me visit her anymore. My response: "F*#k that! You're stuck with me!"

Man, I miss that girl!

~Mandy

P.S. Forgive me for being such a rambler. Christy would go bananas if she saw I used such poor grammar and punctuation -- not to mention all of the run-on sentences ;-)

"Hey! Why Does She Get Handicapped Parking?"

2010-04-06T15:58:00.000-07:00

With her scars and port-a-cath covered, Christy walked around looking like any other young 20 or 30-something. She preferred being treated as "normal", and she tried VERY hard to appear as such. Often she even refused to ask for help, and those around her wouldn‘t even realize her need until they found her, for example, passed out on the floor in her room. She was overwhelmingly stubborn that way. An admirable, yet frustrating quality for those of us wanting to be a source of support for her.

Often this exterior “normal” facade conflicted with the illness and battle raging inside Christy’s body and mind. She resented the fact that she couldn't always just push through the pain and side-effects of chemo and surgery, but even she had to admit at certain points along her cancer journey that she just couldn't do it all -- and she couldn't always hide how miserable she was feeling at times. Another fact she resented.

During the times when Christy did work up the courage to ask for help, she found some people would actually question her need for "special treatment." Like wheel chair service at the airport -- or the extremely coveted handicapped parking spots: "She's, like, in her 20's! She has her youth and her legs seem to work just fine, so what does she need handicapped parking for?"

Casual observers and individuals ignorant to the severity of her illness lacked empathy and would quickly pass judgment. This kind of took its toll on Christy after awhile -- finding that balance between wanting to appear "fine," but also wanting acknowledgement for her private suffering and personal achievements in the face of mortal obstacles.

I believe most would agree that few are more deserving of kindness, patience and compassion than an individual fighting for his/her life on a daily basis. But how are we on the outside to know the true reality of another's inner experience? Especially when "normal" and "fine" is all we can see?

I guess the message here boils down to the "Golden Rule". Everyone has their own struggles and pains. So, have an open heart and an open mind...and be patient with yourself and others. Life demands it.

Also, for those of you struggling with cancer -- or any chronic illness -- please learn to open up to your close friends and loved ones. Believe me, we want to help, but we don't have the faintest idea how. So, share those burdens! Trust me when I say that, denial aside, we are quite aware of your illness and are scared of its possible consequences. Sharing these mutual fears can be so cathartic for all. Speaking the fears out loud can also suppress the power of those fears over your life. Honesty and openness can be so empowering in the face of chronic or terminal illness.

I never really knew Christy until she became ill and was finally able to discuss her deepest hopes, fears and thoughts regarding life, death, the future, relationships, dreams, family, etc…. It is these privileged conversations that stay with me to this day. I cherish them. They give me something to contemplate since her passing, and I find they often make me smile fondly at her memory.

~Mandy

Jazz Hands vs. Spirit Fingers

2010-04-02T21:47:00.000-07:00

Whether it was in imitation of "Fosse," while singing tunes from "Cabaret," or just lying around gleefully watching "Bring It On" -- let's just say that Christy was not shy about whipping out her jazz hands.

She actually promised me and her family that she would appear to us as a ghost by scaring us with jazz hands when we opened our closets. I keep daring her to go all Liza Minnelli on me, but as of yet, there have been no spirit fingers looming in the depths of my closet.

I suppose I should introduce myself before I go on. My name is Mandy, and Christy was one of my dearest friends. Last March 2009, I accompanied Christy to D.C. for the Colorectal Cancer Coalition's Call-on-Congress. Christy was actually a Grassroots Advocate for California and a mentor last year. I was so proud of her -- where she found the energy and drive in the midst of her illness I will never begin to understand. I also realized at the end of our week there that she had given me an amazing gift: an active way to help her fight colon cancer.

So, instead of becoming all-consumed in my worries for her and about the future, I was able to join her in a march up to Capitol Hill to ask our congressmen for their support in stamping out the high incidence of deaths associated with this type of cancer in its later stages. Specifically, we asked them to co-sponsor HR 1189: The Colorectal Cancer Prevention, Early Detection, and Treatment Act. We also requested their support in adding colorectal cancer to list of diseases currently studied by the Department of Defense's Cancer Research Program. Sounds strange? Well, the D.O.D.'s program has played a big part in the advanced research associated with breast cancer; and now breast cancer's rates of detection and survival are so much higher. Our hope is that we can say the same for colorectal cancer in the near future.

Here are the current facts: Colorectal cancers are the 3rd most commonly diagnosed cancers among both men and women; and it is the second leading cause of cancer deaths among both genders as well. The hopeful part is that, if caught in its early stages via colonoscopy, there is a 90% survival rate!

So, it becomes a matter of educating the public about the signs and symptoms of colon cancer, as well as getting them to actually go for their colonoscopies at the age of 50+, or when they are experiencing symptoms associated with this cancer. We then need to ensure that there is no obstacle to their actually getting the colonoscopy (i.e. insurance loopholes, lack of insurance, lack of money, etc). These are the kinds of things we are trying to get implemented into the fabric of our healthcare system as advocates of C3. If Christy had only been given a colonoscopy, in spite of not having insurance or the money to pay for it at the time, maybe her cancer would have been caught at a more treatable early stage. Instead, it was not discovered until at least 5 months later when the tumor had perforated her bowel, and had already spread to her liver.

This year I was able to attend C3's 4th annual Call-On-Congress in the hope of carrying on Christy's advocacy work for her. I was surrounded by all of the other amazing C3 advocates - survivors, their loved ones, and other caregivers. We once again made our way up to The Hill where we shared Christy's and all of our other personal stories. We were armed with facts and statistics that were hard to argue with, but it was those stories that made the biggest most lasting impression. Some were sad, some were hopeful, some were painful to tell and hear -- all were honest and heart-felt. These stories -- your stories -- have an impact. Sharing them can make a difference in ways one could never even begin to imagine.

Thus far, we have succeeded in getting colorectal cancer added to the DOD's Cancer Research Program -- which is pretty dang awesome. We have also convinced many new Represenatatives to co-sponsor HR 1189. We are also working on getting support for a new bill: HR 1330 or The Colorectal Cancer and Screening Act, which would help close loopholes in insurance plans that prevent coverage of colonoscopies.

Will our efforts get the legislation we are pushing for to the House and Senate floors for a vote? I hope so. I do know, though, that we will not give up the fight. And we will do it with our heads held high, our hearts on our sleeves, and with our jazz hands making ripples of hope and change in the atmosphere.

~Mandy

I Hate Roller Coasters

2010-02-07T13:44:00.000-08:00

So we made it through Christmas and New Years. Several days before Christmas I told Christine's dad that nothing about Christmas would be the same. Little did I know how true that would be. We knew it was going to be hard without Christine. She loved everything about Christmas especially being with family.
I found these beautiful pewter angels ornaments that were engraved with "Those we have held in our arms for a little while, we hold in our hearts forever." I couldn't have said it better myself. We gave each family an angel on Christmas Eve. It was very emotional. We all missed her so much.
Christmas morning we went to church. This was our first time in this church since Christine's funeral. I did pretty well till about two thirds through the service and then the tears began to flow which made the rest of my family tear up.
We sat down to Christmas dinner about one o'clock. Within minutes, my dad was coughing like I had never seen before. My brothers rushed him to the emergency room where they stablized him and then transferred him to a hospital in the city. My sister and I drove into the city to meet up with him at the emergency room. He wasn't doing very well and we thought we were going to lose him. The doctors suspected that during his coughing he had asperated food into his lungs. He kept saying that he felt like something was stuck. Bless his heart, he managed to cough it out to the surprise of all the doctors and us as well. My dad recently turned 97 and to have the strength to do that at his age was nothing short of miracle. Unfortunately, he has paid a big price for this incident. It has left him very weak. He has been in the hospital again since but is at home now. For the first time in his life, he can no longer take care of himself. We all thought that he would live to see 100 but now we aren't so sure. His mother lived to be 102!
A few days after we had returned home, our two year old granddaughter swollowed a quarter. Luckily it stuck in her throat in such a way that she was able to breath. They took her to the emergency room and then was admitted to the hospital. Her parents took turns holding her through the night so that she wouldn't be able to move around much. In the morning the X-ray showed that the quarter had bearly moved over night so they put off surgery for several more hours. She had to be put under for the procedure and they wanted to wait as long as possible since she had eaten just before she swollowed the quarter. The procedure went well and she had no after affects at all. In fact, she tried to eat a button the next day. She thought it was candy. (We had to take her dad to the emergency room twice when he was her age for stuff he had put in his mouth! Sorry, Jason I just couldn't resist sharing that.)
So it feels like we have been on a roller coaster. And just to top things off, we have had snow, snow and more snow and as a matter of fact, it is snowing lightly as I write this. Normally I like the snow but I hate when you can't see into the intersection because of the snow banks and we do have snow banks!
Well that was our first Christmas since Christine died. Christine and I would always try to find a silver lining in things. Lots of times it was pretty hard but then we would generally manage to come up with something pretty silly. I have to say the silver lining is that both my dad and granddaughter survived.
Happy New Year......

Jan
Christine's Mom

FIVE DAYS TILL CHRISTMAS

2009-12-20T12:35:00.000-08:00

It's hard to believe that Christmas is just days away. It seems like the days have flown by yet in some ways it feels like my life is just standing still. I found myself doing so many things in preparation for Christmas. The other day I started thinking about all the things I have done and realized that I have been just trying to keep busy, busy, busy. I did a lot of my shopping online because it was so much easier. In the stores I kept seeing things I knew that Christine would have liked. Either she was so easy to please or she just liked everything!

Have a Merry Christmas Everyone. See you next year.

Jan
Christine's mom

One Hour At A Time

2009-12-06T18:05:00.000-08:00

Well, we made it through Thanksgiving. It was every low key. Our son and his family joined us. Each day closer to Christmas seems to get harder. I go Christmas shopping and I see things everywhere that I know Christine would have loved. It took me four days to finish putting up the Christmas tree when I usually do it in hours. The tree is my favorite because we have so many ornaments that were given to us by friends during our travels and from our family. I have always loved decorating the tree because I knew who the ornaments were from and it is always nice to be reminded of them. Christine had not taken any her ornaments that were given to her before she left for California. I put most of them on the tree. Suddenly there just seems to be reminders of her everywhere. We both loved the Christmas season so much. There are days when I ask myself how can she be gone. I miss her so much.

Jan
Christine's mom

In Memory

2009-11-22T10:42:00.000-08:00

Several weeks ago we attended a VNA (Visiting Nurse Association) Memorial Service for all their patients who had passed away during the previous six months. It was a beautiful service. The music was awesome. The women who sang had the most wonderful voice, almost angelic. The grief counselor that I have been seeing was one of the speakers. It was her first time speaking at one of these services (they hold two a year). Her mom had passed away some months earlier and she talked about her experience. It was easy to see why she is able to relate to families who have gone through this. They read all of the names of their patients who had passed, somewhere around one hundred. Then at the end of the service, they asked us to remain seated. Two women came down the aisle with a bowl of small rocks. Every person attending the service could take a rock to keep with them in memory of their loved one. I picked out one that was turquoise. After the service they had refreshments and at that time we were able to visit with Dr. S. He is the Medical Director for the Omaha VNA. I can't even begin to tell you what an amazing doctor he is. We were so fortunate to have him help us through Christine's final days. I truly believe that this is his calling.
I was amazed at how many VNA employees there were and really surprised at the number of volunteers. They have volunteers who will make a bear out of clothing that belonged to your loved one. I knew right away that Christine has a sweater set that she wore all the time. Two days ago, I finally found it when I was going through some of her things. The grief counselor tells me that these bears are really nice. What a wonderful thing it is that these volunteers do.
Our church also had a Memorial Service a few days later. We walked into church with candles as they were reading off the names of anyone who requested that their loved one be included and had passed away during the past year. This also was a very nice service. It's a wonderful thing for the families to be acknowledged in this way, even though it was difficult.
By the way, I lost my rock only a few days later the Memorial Service. I can imagine what Christine would have said about that!! I put my car keys in my pocket where the rock was and it must have fallen out when I took my keys out. However, the next day I was going through some of Christine's things and quess what! I found some rocks! So I figure these are even more personal. When Christine was 18 months old, we moved from Anchorage to Oklahoma City. We flew to Seattle and picked up our vehicle and then drove to Oklahoma. That is a long drive especially for a child. Everytime we stopped Christine picked up rocks. We finally had to limit the number of rocks she could pick up at each stop because these weren't always tiny rocks. By the time we got to Oklahoma City the entire floor in the back seat was covered with rocks.
So Thanksgiving is just a few days away. I am thankful that we had 32 wonderful years with Christine and that she is no longer suffering. Christine hadn't been home for Thanksgiving since she moved to California. Nevertheless, it will be hard. One day at at time.

Jan
Christine's mom

They say time heals all wounds

2009-10-12T18:19:00.000-07:00

I haven't looked at Christine's blog in a while. We are pretty much taking it one day at a time. I have had one session with a grief counselor. She gave me several suggestions that I am considering.

We have heard from so many people. I can't even begin to tell you how wonderful it has been to hear how they met Christine or how they followed her blog or went to classes with her, etc , etc. I know for me, it has helped tremendously. We knew that she had reached out to a lot of people but we had no idea what an impact she had made in people's lives. She had a lot of support from her friends and family. After she passed away, we found out that she had been much sicker for longer than we had realized. She kept some things from us because she worried about us. She knew the cancer had returned long before she told us. In fact, she told her friends while she was in the hospital that she worried about her mom. I told her so many times that I would be okay but it didn't stop her. I guess she just wanted to protect me.

I miss talking to her. We spent a lot of time on the phone. She was my "go to" person. I was always asking her stuff, like how do I do this on the computer or would I like that movie or what is that ingredient? I still think occasionally "I have to remember to tell Christine that" and then it hits me.

The holidays are coming up so quickly. I am rather nervous about that. Christine and I love Christmas. We had already been making plans before she passed away. That might seem a little earlier but not for us. We would start e-mailing each other on January 25 to see who could be the first to say only 11 months till Christmas and this went on every month all year long. I am going to try to follow through with those plans. I guess I have to celebrate for both of us.

Jan

Christine's Mom

Remembering Christine

2009-08-27T11:06:00.000-07:00

Thank you for all your kind words. It means so much to me and my family. We love hearing about how or where you met Christine. We have recieved so many e-mails and cards from people we don't know. It has been so heartwarming to know that so many people cared about her. Please feel free to share you memories with us. We would love that!!!

Jan
Christine's Mom

The End of One Journey and the Beginning of the Next

2009-08-19T17:25:00.000-07:00

Christine passed away on July 18, 2009. She had moved home to Nebraska on July 1. She went to the emergency room at the University of Nebraska Medical Center on the evening on July 2 and was in surgery at 4 AM on July 3. The doctors did exploratory surgery. They were looking for a hole in her colon or stomach because of the bloating in her abdomen but failed to find one. She did well for the next couple of days but then the bloating started again. They did exploratory surgery again on the evening of July 10 and discovered that she had a massive amount of cancer in colon and on her liver. The cancer was very aggressive and we were told that there was nothing they could do for her. The doctor said she didn't have much time. We started Hospice in the hospital on July 13 and went to the Hospice House in Omaha on July 17. She passed away quietly the next morning at 7:56 AM.

I am planning to continue to write on this site for a while but I need some time to collect my thoughts.

Thank you to everyone who has supported and prayed for Christine over these last four years.

Jan,
Christine's Mom

I Hate Xeloda

2008-12-05T20:02:00.000-08:00

I haven't posted in a long time. I have a lot of reasons and I truly have intended too, but, you know, the road to hell is paved with good intentions. Well, I'm back now and I may be making a few changes to this blog in the next few weeks and I should be ready to unveil my new website by the end of the year!

Health update: I've felt great the past few days, but I have been on chemotherapy since July. This time I've been taking Xeloda with Avastin. Xeloda has been very trying. It makes me sick to my stomach, takes away my appetite, and gives me horrible headaches. I had a PET/CT scan on Wednesday and I will get my results on Monday. I'll find out then whether it's been working or not. In the last two scans, the only evidence of cancer was in a few swollen lymph nodes.

School and advocacy work have been keeping me busy. I was named to the C3 Grassroots Action Committee which I am very excited about. I'll be going to C3's Call On Congress at the end of March (and then on to a vacation in Savannah, GA).

Finals are next week so I have some studying to do.

Oooo, Two Days In A Row!

2008-09-09T12:47:00.000-07:00

I love the Daily Show with Jon Stewart. This morning I was on a message board that linked to a YouTube clip done for Stand Up To Cancer and I really want to share a couple of videos that I watched.

I hope that you enjoy these videos as much as I did!

Stand Up to Cancer

2008-09-08T23:16:00.000-07:00

It's been a busy summer. I've been traveling a lot and have neglecting updating this site. I'm going to catch up soon, but until then I'd like to point you all to a post I wrote for C3: Colorectal Cancer Coalition.

In Her Own Words: I Stood Up to Cancer

Meanwhile, I have a ton of stuff to get done this week and I'll be in Seattle next week. Fall classes start the following week. No break for me!

And Now The Moment You've All Been Waiting For

2008-06-09T18:56:00.000-07:00

An Update!!!!!

Well, the school year is basically over. I still have a take-home final to do and a paper to put the finishing touches on. I'll have them both done by Friday. Woohoo!!! I've been so busy that I'm looking forward to my break. I am planning quite a bit of travel this summer. I'm visiting a friend in NYC at the beginning of July. My cousin is getting married towards the end of July so I'll be in the Midwest from then until the beginning of September. Another friend is getting married in September so I'll be in Seattle for a week right before classes start again. I'm not spending much time at home, but it should still be relaxing.

So how am I doing medically? I'm still on my a break from chemo. I had a scan in April which was stable except for one very small tumor (6mm) in my lung. I was given a couple of options. Chemotherapy and a lung resection were both seen as an over-reaction to such a small tumor. Instead, I could wait and see what it would do or I could see if I was a candidate for radio frequency ablation (RFA). Well waiting is not my strong suit, so I wanted to get RFA. It turns out that I am a candidate and my procedure is scheduled for tomorrow morning. My next scan will be in July.

I'm a little nervous about the procedure. It's outpatient, but I just expect that they'll keep me in the hospital overnight. I've looked up information about the procedure so I know what they're going to do, but I can't get the visual out of my mind of a little torch that comes out to burn the tumor. I also imagine the radiologist is wearing a welding mask and now, thanks to my friend Mandy, I head "What a feeling" playing in the background. I'll know this is all true if I wake up tomorrow in a chair dressed like a stripper with a cord hanging over my head that I'll have this strong desire to pull. I'll let you know what happens.

C3's Congressional Butt-In

2008-03-18T11:36:00.000-07:00

Hello to all of you,

I would like to encourage you to participate in the Congressional Butt-In tomorrow 3/19 sponsored by C3 Colorectal Cancer Coalition. It is a simple process. Call the toll free number below, enter you zip code and tell your senators and representative that you want them to "'Cover Your Butt." For information on the pending legislation, you can go to Cover Your Butt.

All of us at C3 appreciate your support. Please forward this information to anyone you think would be willing to participate.

Thank you!

Christine

REMINDER!

Please forward this information to your friends and family and urge them to make the call TOMORROW.

WHO: You

WHAT: Call Congress and demand that they cover your butt!

WHEN: Wednesday, March 19th, 2008

WHERE: By telephone

HOW: Call 866-615-3375 to get connected to Congress

Three bills sit in the 110th Congress that, if passed, will provide coverage of nearly every butt in America that should be screened for colorectal cancer: those belonging to the poor and underserved, the elderly and those with private insurance. Learn about those bills here. Tomorrow, Wednesday, March 19th, anytime from 9 AM to 5:30 PM EDT, call 866-615-3375.

You only have to make one call. You will be prompted to enter your zip code and be directly connected to the offices of your Members of Congress (your two senators and representative). When you reach the offices, simply say, “I urge my senator/representative to support colorectal cancer legislation and COVER MY BUTT!”

The more phone calls the offices receive, the better chance these bills have of getting passed so urge your friends and family to join you in the Congressional Butt-In tomorrow, Wednesday, March 19th!

The C3 Congressional Butt-In is made possible thanks to a grant from Genentech BioOncology.

C3's mission is to win the fight against colorectal cancer through research, empowerment & access.

C3: Colorectal Cancer Coalition
1225 King Street, 2nd Floor
Alexandria, VA 22314
703-548-1225

Sleeping, Trying to Sleep, and Studying

2008-03-16T11:19:00.000-07:00

That is all my life is right at this moment. Tomorrow marks the beginning of finals week for the Winter quarter. I only have one traditional final, but then there are papers and take home tests and papers (did I already say that?). I've been working since 8:30 this morning which is really early since I stopped working at 4:00 am. Now I'm just taking a brief break to write this update.

Insomnia and fatigue alternately hit me like a Mack truck. I'm dealing with the cumulative fatigue of two and a half years of either being in treatment or recovering from major surgery. I can't really explain what this fatigue feels like, but when it hits, I need to rest - I can't just work through it. If I was sleeping regularly, I don't think that it would be as bad, but my insomnia is back with a vengeance. During my undergraduate years I pulled one all-nighter. That's right... one all-nighter in four years. In the last three months I have had at least six nights when I didn't sleep at all. I have found that I can be extremely productive in the middle of the night, but I'd really rather be sleeping. I've tried Ambien - it doesn't really work for me and it gives me a headache. I occasionally take Ativan, but it doesn't make me drowsy anymore. I recently tried Lunesta - it didn't do anything. I'm just going to keep working to get back on a regular sleep schedule.

Finally, I have a cancer update that I should have posted a couple of weeks ago. I had an MRI to see how the chemo was working and to see if I would be a candidate for RFA on the tumor in my liver. Well, it turns out that I'm not a candidate, but for a really good reason. One the MRI, there was no measurable disease. There are still a couple of areas that don't quite look normal, but nothing that they could measure. So my oncologist is giving me a two month treatment break. After two months, I'll have a CT scan and if there aren't any changes, I'll get another two months! I am very excited to have this break. The last round of chemo was so hard on me that I really didn't know how I was going to handle it and school anymore. I really thought I was going to have to consider a break from school. I am still thinking about taking the summer off and postponing my internship until next summer and then not graduating until December 2009, but I think that it is probably not a good idea for me to push through until next June without a break. Plus I'm worried about handling a full time job without a lot of absences since I've had to miss so many classes. School is a lot more flexible about that than an internship would be.

Okay, I have to get back to my Health Economics take home final. Wish me luck in getting all of the work done by Friday!

Anything to Avoid My Homework

2008-02-19T01:11:00.000-08:00

It's going to be a crazy week. I was supposed to get so much done this weekend since I had three days. Saturday, I felt like I was coming down with another cold. Sunday, I did some work, but everything seemed to take 3-4 times longer than I was expecting it to. Today, I was having the same problem and somehow the day just got away from me.

Last week I was unable to attend almost all of my classes because of chemo side effects. My last treatment really knocked me out. I could barely get out of bed. The cumulative effects, especially the fatigue, are awful. Ideally my last treatment will be my last treatment for a while. On Thursday evening, I am having an MRI done. We're doing an MRI instead of a CT or a PET/CT scan at the request of the interventional radiologist to get the more detailed picture. I am still a potential candidate for RFA (radio frequency ablation). I'll meet with my oncologist next week to go over the results and discuss my options.

On Friday afternoon, I went in for an urgent care appointment because I have a sore throat that will not go away. I was on antibiotics for 10 days, but that didn't make it go away. Well, they don't know what is causing it. They did a throat culture and I am going back in on Thursday morning to see my primary care doctor to get the results. I really hope that something turns up on the culture because my voice sounds scratchy and it hurts to swallow, to cough, or sometimes even to talk.

I'm falling asleep at the computer now so I guess I should go to bed. The rest of my homework will have to wait until morning.

She's Back

2008-02-07T05:15:00.000-08:00

So it's been an appallingly long time since I have updated. Suffice to say, graduate school is more work than I imagined. It's also challenging and rewarding and I am really enjoying it.

I have continued to go through treatment while attending school. I have been getting Folfiri (Irinotecan, 5FU, Leucovorin) with Avastin since last June. I will have my 12th treatment tomorrow morning and I am hoping that I will have a scan scheduled in the next couple of weeks. If the scan shows shrinkage or stability, I am going to stop treatment and switch to a maintenance regimen of Avastin. I'm really depending on those results. I'm just not sure how much longer I can handle school and chemo. I may have to take a leave of absense which I really don't want to do.

Let's talk about fun new side effects. I have some fluid in my abdomen. Some days I'm so bloated that it hurts. I take diuretics when I can, but I have to be near a bathroom for most of the day. I had a short break from chemo over the holidays and by the time I restarted treatments, the bloating had gone away. Now four weeks later I look pregnant and have to wear sweatpants everyday.

Well, it's 5:30am and I should try to get a little more sleep before I head over to campus. I'd like to say that I'll post more regularly, but all I can say is that I am going to make an effort. And to those of you who sent emails and haven't received responses yet, they are coming... soon.

Musings at the Philadelphia Airport

2007-10-12T11:22:00.000-07:00

This weekend I am attending the CCA (Colon Cancer Alliance) Conference in Baltimore. I’ve never been there before and would love to do some exploring, but I have been inundated with schoolwork. I have a phenominal amount of reading that I need to get done by the time that I get back to LA on Sunday night. Thus I will be spending my free time this weekend with my nose stuck in a book or working on the two papers that I have due in the next two weeks.

I am very excited about the conference though. You can read about it on the CCA website (www.ccalliance.org). I’m hoping that the presentation will be very informative and I’m looking forward to meeting more survivors and connecting with a few of the people I met last spring in DC. I will try to write daily updates – I think I have free internet access at the hotel.

I also found out that there is a Caribou Coffee just a couple of blocks from the hotel. I’m psyched to get my Caribou fix – I loved them in Minnesota, but they haven’t moved into the LA market yet.

So I’ve been focusing on school for the last few weeks. It a lot of work, but I’m really enjoying the classes. We’ve had some fascinating lectures. The other students in the program are nice and friendly. I’m just hoping that I’ll be able to stop chemo soon because it’s hard to do both. I’m amazed that people are able to work and go through chemo at the same time.

I’m writing this from the airport in Philadelphia. I had a two hour layover before my short (less than an hour) flight to Baltimore, but we all know what kind of luck I have with flights. Instead of getting in just before midnight, I’ll be lucky if I get in by 2am. Fun. I love quality airport time.

I should get back to reading The Logic of Congressional Action. It’s not going to read itself and I have to read most of the book by Monday… and that’s a little less than half of the reading for Monday – for one course. I’m taking three.

Summer, ER Visits And Hair Loss

2007-09-17T14:49:00.000-07:00

My summer vacation is coming to an end - although no vacation should include so many medical appointments and nausea. Between the traveling and the chemo I have really neglected my updates, but my schedule will be more structured starting next week. I do much better with structure.

Chemotherapy has been really trying. I had a session last Tuesday and wound up in the ER on Friday. I had a really severe headache and couldn't keep any food or fluids down. They did a CT scan of my head and there was no evidence of bleeding or metastases. They gave me some morphine and some IV fluids and I felt better. Today is the first day that I have felt normal - no lingering headache pain, very little nausea.

Next week I'm going to speak with my oncologist about changing my treatments to every three weeks and going back on decadron (steroid) on treatment days. There are a lot of reasons, but it is also one of the only solutions that I can see to being in school and being in treatment. We're still waiting for scan approval. If I have a clean scan, I'll have two more treatments. If there has been disease progression, we'll have to switch chemo regimes. If there has been no change, then we have to discuss options.

I have a lot of my hair on this treatment. I have it cut very short and wear hats and wigs when I go out in public. It hasn't been as difficult as I had anticipated, but I still wish that I had my hair.

Okay, I'm a dork and Oprah is starting (Dr. Oz is on today) so I have to go!

Future Plans

2007-08-08T16:21:00.000-07:00

I've received a number of questions about my graduate school plans. Many people have assumed that I would delay starting school under the current circumstances. This is not that case. I plan to begin school at the end of September just as I intended. I have discussed this with my oncologist. There is only a small amount of disease that we are fighting right now and Dr. W see no reason why we can't aim to be done with chemo prior to the start of classes. So I'm moving full speed ahead with my plans!

I have a couple of vacations planned before classes begin. At the end of the month, I will be in Las Vegas having a reunion with a bunch of my college friends. Then the first week in September, I'm going home to Omaha to visit my family which as of a few hours ago is one person larger! My niece, Isabelle Christine, was born at 12:37 pm today. Congratulations to my brother and his wife! I'll be in town to meet my new niece and to celebrate her sister's first birthday. I'm really looking forward to it.

Stupid Steroids... Again

2007-08-06T18:22:00.000-07:00

During my first two chemotherapy sessions way back in December 2005 I was very sick. In order to help manage the side effects, my oncologist prescribed Decadron, a steroid, to be taken on my treatment days. You can read about the experience here. (Despite my proclamation at the end of the post, I did not go back on the Decadron.)

At the end of June, I began to take Prednisone in an attempt to treat my ITP. It didn't work. It did make me think that I was loosing my mind and I went weeks sleeping no more than 5-6 hours per night and more often than not less. I was taking Ativan and Ambien every night just to get myself to sleep. I was retaining so much water that we had to rig my bridesmaid dress because it wouldn't zip up. Don't even get me started on the mood swings and the manic episodes which led to an amazing number of baked goods at my grandparents' house.

9 days ago I took my last dose of Prednisone. Once it was confirmed that it wasn't making a difference, Dr. W told me to start decreasing my dose by 10mg every three days. Although it seemed to take forever, I actually went off the drug very quickly since many people have to wean themselves very slowly. I took it for just over five weeks. Between the side effects and the withdrawal effects, I don't think that I could handle taking it again. Stupid Steroids!!!

Clearing Up Misconceptions

2007-07-28T19:29:00.000-07:00

I'm here. I'm doing okay. I didn't feel up to posting and then I was out of town and then I didn't feel up to it again and then I just got overwhelmed by the sheer volume of information that I should have posted already. Anyway, here's a quick overview of what has happened.

In May, right after we decided to stop treatments, I had a CT scan. The results of the scan showed a shadow on my liver and some slight soft tissue thickening in a spot in my abdomen. Neither area was fully consistent with a reoccurance, so Dr. W ordered a PET/CT scan to check for metabolic activity. There was a substantial amount of difficulty getting the paperwork through to get the scan. The day before the scan, I had an appointment with Dr. W and he said we should go ahead and schedule chemo for the following week. At that point, he also had an oncology fellow perform a bone marrow biopsy on me due to the ongoing problem of the low platelets. Bone marrow biopsies are not fun - ouch!

The next day I had the PET scan, but there was a problem with the IV and instead of injecting the radioactive isotope and the contrast into my bloodstream, it went into my arm which swelled up. It also meant that the scan was worthless. We had to schedule another one for that Friday with an extra appointment with the oncology clinic to have them insert the IV.

On Thursday, I went in for more blood tests. I briefly spoke with Dr. W on the phone and he let me know that the bone marrow biopsy results were good and the low platelet problem was not coming from there. I also had tested strongly positive for the platelet antibody. He said he felt comfortable diagnosing me with ITP - Immune (Ideopathic) Thrombocytopenia Purpura. In other words, my own immune system is attacking my platelets. He prescribed a high dose of prednisone to try to raise the platelet count.

The following Monday, I went in expecting the PET results and chemo treatment. Well, the PET results were not in yet and my platelets were still low. So Dr. W postponed my treatment until Wednesday and ordered two treatments of IVIg (intravenous immunoglobulin) which meant that I had to sit in the clinic for hours on Monday... and Tuesday... and Wednesday. Wednesday Dr. W came in and gave me the results of the scan. My liver is clear. The shadow did not show up at all. There is metabolic activity in the spot in my abdomen and a couple of lymph nodes. So I started treatment that day.

I am on FOLFIRI (5FU, Leucovorin, Irinotecan) with Avastin every two weeks. My second treatment was delayed because the day after the first treatment finished, I left to visit my family, my college friends and attend the wedding of my LA friends Sarah and John. The day after I returned - actually a few hours after I returned, but that's another story - I had my second treatment.

My third treatment is scheduled for this Tuesday. Good times...

Take a Step Forward If You Think You're Having Chemo Today... Not So Fast Christine

2007-06-26T08:00:00.000-07:00

I went in yesterday to start my new chemo, but lo and behold, my platelets have dropped... again. This is despite the large dosage of prednesone that I took the whole weekend. So plans have changed... again. Yesterday I received an infusion of IVIg and I will receive the same today. Tomorrow we will test my platelets... again. Then I will start chemo. Let the good times roll.

I'd give further explanation right now, but I have to get to my appointment.

Reality Check

2007-06-21T20:52:00.000-07:00

I have two unconfirmed reoccurances (I'm having a PET scan tomorrow) - one in my liver and one one in my abdomen. I will be starting chemotherapy on Monday (Folfiri with Avastin). Treatments will be every other week (except the first round when I have an extra week off because I will be out of town) with an in-office infusion on the first day followed by 46 hours with a pump. The initial plan is for four months of chemo. I'll be meeting with an interventional radiologist to discuss the possibility of radio frequency ablation for the liver spot.

It's been a crappy week and I've spent a lot of it getting scans that didn't work and painful tests that came back negative for any abnormalities. I don't really feel like getting into all of the details right now - maybe this weekend.

Happy Birthday to Me!

2007-06-02T10:03:00.000-07:00

Today is my 30th birthday. Yea! I'm gettin' old! (Not really - I'm actually excited to be turning 30.)

This morning I received an email from my oncologist saying that the blood test I had done yesterday didn't work. The phlebotomist didn't draw enough blood. So I have to get it redone. I think he wanted me to come to the hospital this weekend and do it, but it's my birthday and I don't want to worry about it. So I'll go on Monday and have it done. I've had it done late before so it's not the end of the world.

Tonight there's a party to celebrate - my birthday, not the messed up blood draw. It should be a lot of fun - the party, not the messed up blood draw.

I'm off to get a frou frou coffee drink and do a little shopping. Yea birthday money!!

A Cancelled Appointment

2007-05-22T19:47:00.000-07:00

The phone rang this morning at 8am. I am not awake at 8am - that is unless the groundskeepers next door have decided it's time for the leafblower or, even worse, it's time to pull out the chainsaw and do a little pruning. (Seriously, they started at 7:50am one day last week!) Jim answered it and I went back to sleep because I wasn't planning on getting up until 9am. Now don't jump ahead in the story... Jim did not wake me up to take the call. He just took a message and let me sleep.

9am rolled around and I decided to get up at 9:30 - don't judge me, I've been through a lot! : ) At 9:30 I stumbled out of bed and into the bathroom. Jim came out of his room and told me that my 2:45 appointment with the gastroenterologist had been rescheduled to next Tuesday at the same time. [Okay, so he just said my appointment with the doctor, but I'm sure if he knew the doctor was a gastroenterologist, he would have refered to him as a gastroenterologist.]

UGH!!!

Well, that's not going to work because I have a final for my psychology class from 12:30 to 2:30 next Tuesday and the doctor's office is in Santa Monica. Remember when I was late for the dermatology appointment in Santa Monica - I will never let that happen again! So I had to call and schedule it for later that day. It didn't seem to be a problem. We just pushed it out to 3:30pm.

I did have to go to class this afternoon though and I was so looking forward to not having to go, but it's over now. I have one more economics class and then two finals next week and I am done until September 27th when I start grad school.

How Many Doctors Can One Person Have?

2007-05-10T15:56:00.000-07:00

As you may haven noticed, I have not been updating much recently. Honestly, I just haven't felt like it. No real excuses... oh, except the two weeks I was on large doses of painkillers. I didn't do anything for those two weeks. There's nothing wrong and no need to worry. I'm starting to feel more motivated to post again. Anyway, here's my update:

I met with a Hepatologist, Dr D, a few weeks ago because my liver numbers have been a little bit wonky for about 6-7 months. Nothing dramatic, but just not quite in the normal range. Dr D believes that it's likely scar tissue that is partially blocking one of the ducts in my liver. He has ordered an ERCP to check it out. If that is the case, he'll insert a stint during the procedure and that should take care of it. There is a remote possibility that it is a reoccurance, but I have had a CT scan (with normal results), a liver ultrasound (with normal results) and many blood tests and there is no evidence that is the case. I'm not concerned about it. I'm still waiting for the ERCP to be scheduled.

I finally had the MRI of my neck that was ordered back in February. I hadn't had an MRI since the day before my diagnosis, but I remembered how utterly enjoyable they are. The machine is really loud; you have to wear earplugs. I'm not claustrophobic, but stick me in the MRI tube for 30 minutes and I start to freak out. I hadn't had the "head cage" experience before. Because they were taking images of my neck, they put my head in a little cage to immobilize it, but there was a mirror angles so I could see out the end of the tube... because that helps. The results of this test couldn't be more normal. Absolutely nothing wrong.

Monday, I had an appointment with Dr W. We have decided to discontinue treatment. I have attempted multiple adjuvant treatments and have not been able to tolerate any of them. After 8 months of trying to get in 6 months of treatment, we're letting it go. Yea! I have a CT scan and an chest X-ray scheduled. If the results of those come back normal (and we fully expect them to), I don't have to go in (to oncology) for 3 months. Woo-hoo!

I asked Dr W when I should get a colonoscopy. He asked me when my last one was. Long pause... "I've never had one." So I've been referred to a Gastroenterologist to have my first colonoscopy. If there are no polyps, I should be able to was a few years before I get another one. My consultation appointment with Dr F is on the 22nd.

Yesterday, I had an appointment with Dr B, my dermatologist. He was not happy that I went ahead with the Vectibix treatment. He would have preferred that I try Erbitux again, but at a lower dose. He was also not happy with the antibiotics that I was prescribed and told me to stop taking them immediately (I only had 2 more doses, 1/2 day, left of a 14-day round). He doesn't want me on any more antibiotics for the rash. We're trying some different topical treatments to help along the healing of the discoloration of my skin. Dr B said it could take months to go back to normal. I told him that I have to be in a strapless dress at a wedding in July. He's going to help in any way that he can.

On Monday, my platelets were at 121. That's right. 121. This is the first time that they've been over 100 since last September. 150 is the beginning of the normal range. Do I dare to think that they might rise that high?

Sheesh! I've had a lot of appointments recently.

Still to come (perhaps in the next few days): the rest of my Washington DC story; my trip to Seattle; and probably another rant about how much I dislike my psychology class.

Until then...

It's A Red Letter Day!!!

2007-05-01T14:57:00.000-07:00

Guess who has been accepted to graduate school this fall?

IT'S ME!!!

Update

2007-04-22T10:20:00.000-07:00

Well, I haven't posted in ages. I was out of town and then adjusting to being back and then I decided to try the Vectibix. Everything came to a screeching halt. I have had a HORRIBLE reaction. I have been on major painkillers for a week and I spoke to my doctor this morning. He is going to admit me to the hospital today so I can get IV pain management. I have lots and lots to post about, but I have to get my stuff together and I know better than to post all hopped up on painkillers.

I will post again when I am released. (and no, I have not heard about grad school yet.)

Eeek!!!

2007-03-29T14:51:00.000-07:00

Time is getting away from me. My ride to the airport will be here in an hour and then I'm off to Seattle until April 8th. I'm going to try to finish up my posts about my DC trip while I'm there. I swear I will get to the really good parts soon!

I've taken two tests today, had an Avastin treatment and a blood draw, and I've run errands to the bank, drug store and gas station. What haven't I done? Oh yeah, PACK!!! That's next on my list, but it's been next for the last hour and I haven't even gotten my suitcase out yet. So why am I posting? I don't know!

Gotta go...

Update Regarding Amendment

2007-03-25T14:23:00.000-07:00

For those of you wondering, the Senate passed the budget resolution on Friday afternoon including the Specter-Harkin amendment to increase the NIH funding. Thanks to all who took the time to contact their senators.

Well Hello President Lincoln... and Roosevelt... and Jefferson

2007-03-24T19:48:00.000-07:00

After the complete fiasco that was my journey from LA to DC, I was left with only minimal sightseeing time. I had made plans to meet my friend Sara for lunch. I hadn't seen her in eight or nine years so it was a priority for me. That meant I needed to be a power tourist Sunday morning.

I got up early and headed for the nearest metro station. I headed for the National Mall to make the most of my time. It was a beautiful morning - not a cloud in the sky. It was a little bit cold for me. [I'll admit that I have become a complete wimp after almost four years in Southern California. We're kind of spoiled... okay, not "kind of," we're spoiled.]

Lincoln Memorial

I was at the National Mall before 9am and I went from memorial to memorial. For those of you who haven't visited, these are all located in a relatively small area. You can easily walk from one to the next, but by the end, you've covered a lot of ground.

Washington Monument as seen from the Lincoln Memorial

The Whitehouse as seen from Washington Monument

This is zoomed in dramatically and is also the closest I got to the Whitehouse. There was so much that I wanted to see. I had planned on checking out several museums, the changing of the guards at the Tomb of the Unknown Soldier, the Declaration of Independence and the Bill of Rights at the National Archives... All that time I spent working out how to fit it all in, my charts and spreadsheets, and I wound up having to wing it. I will definitely have to go back. I didn't get to see it all, but I absolutely fell in love with Washington DC.

The Franklin Delano Roosevelt Memorial was my favorite. It gave me chills - and it wasn't due to the cold either. The memorial blocks the wind. There are many, many quotes on the walls of the memorial, but the above quote was by far my favorite. For those of you who don't want to squint to make it out, it reads, "In these days of difficulty, we Americans everywhere must and shall choose the path of social justice... the path of faith, the path of hope, and the path of love toward our fellow man."

Specter-Harkin Amendment

2007-03-22T22:35:00.000-07:00

Wednesday, Senator Specter (R-PA) and Senator Harkin (D-IA) introduced a budget amendment that would increase funding to the NIH (National Institutes of Health) by $2.2 billion. They could be voting on this amendment as soon as tomorrow (Friday). Please take the time to email your senators and encourage them to vote for this amendment. You can send a prewritten message through the C3: Colorectal Cancer Coalition website by going here. It only takes a couple of minutes. Thanks!

Getting There Is Half The Fun?

2007-03-22T20:08:00.000-07:00

I usually avoid non-direct flights. I don't like having to change plans and I always have an inordinate amount of anxiety that I will miss my connecting flight. I was fortunate enought to have a Northwest Airlines frequent flyer ticket donated to me for this trip. Unfortunately, Northwest Airlines does not offer a direct flight from LAX to Reagan National so I had a brief layover in Detroit.

As many of you know, there was a major snowstorm on the east coast last Friday. When I checked my flight information that morning, everything was okay. There was a warning on nwa.com that anyone flying into Boston, New York or Philadelphia should rebook their flight for Saturday or Sunday and no fees would be charged. Washington DC was not on the list and according to weather.com, they were only expecting rain.

My flight from LA to Detroit passed without incident. Then I got off the plane. I checked the departure monitors to find out the gate for the DC flight, but all of the flights to Washington DC were listed as cancelled. I went back to the desk and asked what I needed to do. The man at the counter told me to go to the rebooking gates 41-43 and be prepared to wait. I went to those gates and got in line. I waited and waited and waited. I listened to people whine and complain (which I have very little patience for).

Finally, I was able to talk to an agent. The earliest that they could get me on a flight was Monday morning. MONDAY MORNING!!! It was Friday night! They wouldn't cover any expenses - they weren't even helping people find places to stay. I told the agent that Monday morning was too late. I needed to be there by Sunday afternoon. I even explained my situation. She was nice, but couldn't do anything to get me on an earlier flight.

I was determined to get to DC so I asked the agent if she thought I could still get a rental car. She was sure that it wouldn't be a problem and printed out a list of rental agencies with their 800 numbers. I headed for the rental car shuttles and started dialing. Each time I was put on hold, I hung up and dialed the next number. When I dialed Hertz, I got a hold of an actual agent and asked how quickly they could have a car ready at Detroit Metro Airport which could be retunred to Reagan National the next day. The agent said it could be ready in 15 minutes so I booked it.

I picked up the car and since my mom made me promise that I would get a hotel room and get some sleep, I stopped at a couple of the airport hotels, but they were all booked. So I used the very limited map that they had at Hertz and headed south out of Detroit. About 45 minutes later, I saw an exit for Monroe, MI that had a bunch of hotels so I stopped there. I went to the Holiday Inn Express and they had rooms available. While I was registering, I told the night manager my story and she gave me a room at the corporate rate and then said that it was late (almost 10pm) so she probably wouldn't sell it still tonight so she upgraded me to a jacuzzi room.

Saturday morning, I got up at 7:30am - that's eastern time (4:30am pacific) - and headed out. I picked up an atlas that was clearanced at the gas station ($.89). I can't remember the last time I drove somewhere unfamiliar without printed directions from the internet, but this time I did it old-school. Even with multiple stops, I was in Arlington, VA, where my hotel was located, by 4:00pm. I only ran into a little snow for about 45 minutes just outside of Pittsburgh. The roads were good, traffic was light, and nothing was going to stop me from making this trip! I'll tell you right now, it was completely worth it.

* Happy 100th Post!!!*

2007-03-21T23:25:00.000-07:00

I'm back from a very productive trip to Washington DC. It's going to take a while to cover everything about my trip so I'm going to do a series of postings. If you don't count this one - which I don't and I am the queen of Colon Cancer Sucks Ass - there will be five posts. I will give a little preview of things to come though.

Getting There is Half the Fun? I left last Friday. Remember Friday? The day with the snowstorms on the east coast? My journey did not exactly go as planned...

Well Hello President Lincoln... and President Roosevelt... and President Jefferson... What do you see in DC when you only have three hours to be a tourist?

The Amazingly Wonderful Gloriousness that is C3: Colorectal Cancer Coalition Stay tuned for obscene amounts of praise for the staff and the other advocates - and I swear it's not only because a lot of them may read this! : )

Goosebumps and a Polar Bear: My Day on Capitol Hill That should be self-explanatory. Well, it makes sense to me...

If Getting There is Half the Fun, What Kind of Nightmare is Going Home? I'll just say that a coupon for a free alcoholic beverage (which I'm not allowed to drink per my oncologist) on my next flight does not make me any happier with Northwest Airlines...

These posts may not come in this order, but I promise to have them all out within the next week since I leave for Seattle next Thursday.

Stay tuned...

Ready Or Not, Here I Come

2007-03-14T18:43:00.000-07:00

All that blood... vials and vials of blood that they took from me on Friday. They tested me for so many things - disorders that I'd never even heard of. The results - COMPLETELY NORMAL!!! Well, completely normal except my liver function numbers which had ultimately led to the barage of testing to which I was subjected. Those numbers still came back elevated. What now? Well, Dr W has referred me to a hepatologist (an internist who specializes in the liver) and ordered an ultrasound of my liver. Now I just wait for Medi-Cal approval (see my last post for an idea of how that is going) on those appointments.

I leave Friday morning for Washington DC! I spent about two and half hours yesterday working out how to best spend my sightseeing time. There were spreadsheets involved and approximate amount of time needed to fully appreciate each monument, museum and historical sight. I wish that I could say that I was kidding. Honestly.

I'll be meeting with my of congressional representatives on Tuesday. Please consider contacting your senators and representatives that day to ask them to increase funding for colorectal cancer research and prevention. Information about our cause can be found at C3: Colorectal Cancer Coalition.

In other news, I ran over a traffic cone today. Okay, I ran over several traffic cones today, but only one was temporarily lodged under my car (it fell out after about 100 feet). A special thank you goes out to the woman who was so important that she couldn't break for a moment to let me switch lanes, but instead needed to pass me as quickly as possible just so she could sit in line at the traffic light to make a left turn. An apology goes out to the man who had blocked my lane with the traffic cones and was standing on his truck trimming the tree. I hope I didn't startle you, but judging by the look on your face, it was just another day on the job (maybe next time you could put a sign somewhere to let us know that you've blocked our lane).

Can't I Sleep A Little Longer?

2007-03-07T18:35:00.000-08:00

I'm exhausted. I've been sleeping each night and taking naps every day, but I'm still tired. It'll be fine though as long as this passes before I head to Washington DC (9 days!).

Dr. W has ordered a bunch of blood tests for me. I'm going in Friday morning to have the blood drawn and then I meet with him on Monday so I'll get the results then. I guess that we're still eliminating possible causes for the low platelets and shoulder pain. There is also some ankle pain that I have to mention to him. He might send me back to Dr. K (my internist) to deal with that. I still haven't gotten approved for physical therapy or for a MRI of the neck. Medi-cal is being particularly slow.

I went to the Getty Museum today with my roommmate, Robert. He had never been there and I'll use any excuse to go there. We had a really good time... and the weather was great. We sat outside and had lunch. The only dissappointing part was the haze (read: smog) which obscured the fantastic views of the city.

Making Decisions

2007-03-02T16:43:00.000-08:00

In the aftermath of my initial diagnosis, I made a vow to myself that I would do whatever it took to beat this. Up to this point, the steps were laid out for me: colon surger, chemotherapy of Folfox with Avastin, liver resection, adjuvant chemotherapy. There has always been a clear direction to go. That is until we reached adjuvant chemotherapy. What I would like to do - Xeloda and Avastin consistently for a couple of months - it not an option because my platelets are still low (55 at last count). With the low platelets, I cannot receive any chemotherapy drugs. Since mid-September, I have been receiving Avastin as a single agent; however there is limited clinical evidence that Avastin is effective alone. It really needs to be combined with something. We tried it combined with Erbitux one time in December. That led to the worst rash that I've ever had - more accurately, the worst rash my oncologist has ever seen!

At my last appointment with my oncologist, he encouraged me to at least consider trying Avastin with Vectibix. Vectibix is a new drug - I was enrolled in a clinical trial for this drug, but I was in the control group. I have been very hesitant to do this for one huge reason. Vectibix works the same way as Erbitux. 89% of patients experience a rash as a side effect and in 12% of patients, those rashes are severe. The difference between Vectibix and Erbitux is that Vectibix is a fully humanized drug whereas Erbitux still contains mouse protien. So there is a difference, therefore there is a chance that I may not have as severe a reaction.

I asked my oncologist for some time to think about it. I didn't want to even consider starting it prior to my trip to Washington DC. Really, I didn't want to consider starting it at all, but it has really bothered me that I wasn't considering it. I did vow that I would do whatever it took and my rational side says that it's just a rash. Well, I talked to my psychologist about it. We went through the pros, the cons, what I would tell someone in my position (if you're wondering - "suck it up"), and if I were to decided to try it, what would make it easier to get through. It was the last part that really started to make me think. I'm going to talk to my oncologist about this, but right now, I'm actually willing to give it a try with some conditions:

1. We don't start until April (after I get back from Seattle).
2. I see my dermatologist prior to the first dose to have a plan of attack in place.
3. If the rash is severe (painful, fever-inducing), I want to be admitted to the hospital.

Shocking, isn't it? I hate being in the hospital, but in retrospect, I think I should have been in December. It was brought up, but I didn't want to go and they didn't push it.

Since I started actually considering this line of treatment, I have been much more productive. I hadn't realized how much it was bothering me, but thinking that I might actually do it has been a huge weight off my shoulders. I AM willing to do whatever it takes to prevent a reoccurance.

Latent Snobby Tendencies

2007-02-28T16:04:00.000-08:00

I didn't realize that it had been so long since I updated. I didn't mean to leave "Radioactive Urine" at the top of my site for so long. She said "radioactive urine," heh. Okay, so enough of that.

I received the results of my ultra-exciting, ultra-fun bone scan (a couple of weeks ago) and there is no sign that the cancer has spread to the bones. Good news! It did show that there is some degeneration in my shoulders, knees and ankles. Of course there is! My doctor (internist) believes that it is reversable so I'll go through physical therapy and we'll do another nuclear bone scan in a year. My oncologist has ordered an MRI of my neck and shoulders - just as a final precaution. My internist is going to talk to my oncologist about having a bone density scan done to see if there is damage beyond those joints and if so, how extensive it is. Again, at this point it should be reversable.

I'm going to Washington DC in two weeks!

My psych professor has assigned us a "paper." I use the quotation marks because it's basically a coloring project with some questions we need to answer. All the answers come from one chapter in the text book. Correct me if I'm wrong, but that is not what I would define as a paper. Although taking into consideration the other students enrolled in the course, it's probably right about the level that they can handle.

If it sounds like I'm just being a snob (not that I deny my own latent snobby tendencies), here's an example of typical behavior. There is a student in the class who has criticized the professor's lecture, mid-lecture and to the professor, because the student can't keep her notes properly organized when the professor answers questions. She needs the entire lecture to be completely linear. Well I wish her good luck when she leaves community college behind because I doubt she's going to have a lot of professors at a four-year institution who are going to organize their lecture solely to meet her needs.

Anonymous quote: "Why couldn't you get a more exciting disease?"
Now, honestly, who doesn't think that colon cancer is an exciting disease? It's got it all: deception (largely asymptomatic), intrigue (why won't my platelets go up?) and poo. She just said "poo," heh.

Here is something for all of you to enjoy... The Worst Commercial Ever!

Radioactive Urine and the Detector I

2007-02-10T20:11:00.000-08:00

It sounds like a weird comic book, but it's not. Well, maybe it is, but it's not a comic book I know. Of course, I don't actually know comic books anyway, so I gues it could be one. Anyway, that's not the point...

Yesterday, I went to the Nuclear Medicine office to have a bone scan due to previously discussed shoulder pain. [Side note: Thursday, I had an evaluation with a physical therapist and she thinks that the shoulder pain is due to overcompensation for my weakened abdominal muscles. That's just what I thought!] The first step in having a bone scan is to have a radioactive isotope injected directly into your veins. I've mentioned before that my veins are less than cooperative. I think they're just smart because they know to hide when a needle is trying to puncture them, but it would be easier, and less painful, if they would just embrace the idea. The first technician spent about 20 minutes searching for a "good" vein. I mentioned where the oncology clinic phlebotomist draws blood, but he thought it felt like there was scar tissue there. Finally, he decided to try the back of my left hand... with no luck. Logically (?), he tried the back of my right hand... still no luck. Then he decided to find someone else to try it... oh, there's the luck! The second technician felt around a little until I told her where I have my blood drawn. She tried it. Lo and behold, it worked. So I was injected with the radioactive tracer.

I had done a little research prior to the scan, and found this information:

Most of the tracer will be eliminated from your body (through your

urine or stool) within a day, so be sure to promptly flush the toilet and

thoroughly wash your hands with soap and water.

I'm so glad that was cleared up for me since I so rarely bother to flush the toilet and wash my hands. I could have caused quite a kerfuffle with my radioactive urine had I not received such good advice prior to the test since the need to flush and wash was not mentioned by any of the techs in the office.

After the injection I was allowed to leave for a couple of hours. Upon my return, I was brought into the scanning room where the technician asked me to lay down on a table with my hands crossed over my pelvis. He placed a sheet over my midsection and tucked the sides in tight. Then he told me to move my arms to my sides which was very difficult because I was tucked in to tight. Once he was happy with the placement of my arms, he asked me to tilt my feet inward until my toes were touching. Next thing I knew, he had taped my feet together. I was immobilized! Then the test began. A camera was brought down until it was almost touching my face. As it slowly moved away from my face and towards my feet, I noticed that the camera had a name printed on the side. I was the Detector I. Flying in the face of danger, the Detector I comes to search out or detect the anomalies of your bones. We should all feel a little bit safer knowing the Detector I is out there.

It took 19 minutes for the camera to go from my head to my feet. The technician told me to wait while he developed the film and showed it to the radiologist. I couldn't leave until he verified that they didn't need any further pictures. Because it's me and I like to spend as much time with medical professionals as I can (note the sarcasm), of course they needed another scan. This time it was only five minutes, but I had to stand the whole time with my arms up in the air so they could get a clear shot of my scapula (shoulder blade). That was fun.

I'll get the results of the scan (along with some xrays and blood tests) when I meet with my PCP on Tuesday. It should be a good day... or an unremarkable day... let's just go with a Tuesday - it should be a Tuesday.

Very Exciting Opportunity!!!

2007-02-07T13:04:00.000-08:00

A couple of weeks ago I applied to be an advocate in the C3 Call-On Congress. I just received notice that I have been chosen to participate. I will be going to Washington D.C. for several days in March. I will spend two days in advocacy training and a day meeting with congress people. C3: Colorectal Cancer Coalition is organizing this event. This is a great opportunity for me to help spread awareness that colon cancer can affect anyone regardless of age or family history.

I am looking for sponsors to help me fund this trip. I have to cover airfare, registration fee, some meals, and at least one extra night in the hotel. If you can help, please email me.

Thanks!

There's A Funny Story At The End

2007-02-06T15:13:00.000-08:00

My bedroom window overlooks the pool and courtyard area of the building next door. About a third of my view is obstructed by a large tree. It is one of the trees that actually loses its leaves in the fall (not all do in Southern California). As I was sitting at my desk, contimplating what to write about, I noticed that this tree, which only a couple of weeks ago was bare, has bloomed with thousands of little white flowers. It's beautiful.

I started school today. I've actually dropped another class - chemistry, if you're wondering. I'm only enrolled in two courses/six credits, but the two remaining courses are going to be a considerable amount of work: macroeconomics and psychology. I'm looking forward to it though.

Yesterday, I spent the day learning about the Master's program I applied to and meeting one on one with faculty from that program. It was very informative and made me even more excited about the program. [NOTE: Despite my earlier posts to the contrary, I will not find out if I was accepted into the graduate school program until some time in March. I have at lease anther month to wait.]

Saturday, I am attending a one-day colon cancer conference sponsered by the Colon Cancer Alliance. It should be very interesting. If you live in the LA area, you can still go to their website and register.

I'm going to Seattle for my spring break, thanks to Kristen and Larry! I can't wait!!

Okay, I promised a funny story, so I supposed I should actually deliver one for anyone who read through the rest of this boring post. Hmmm...

Right before Christmas, I was visiting my friend Mandy. Her mom asked if we would come caroling at a local assisted-living facility with her church group. Mandy said that we would, but later informed me she would be "church singing." This is a term her father made up for mouthing the words to the songs, but not letting out any sound. Well, I sang because I love Christmas songs, but sure enough Mandy and her sister were both "church singing," but only until we got to our last song - Rudolph the Red-Nosed Reindeer. Mandy chose to add a little extra something by singing (or more accurately shouting - in her own special key) the echoes and the little lines such as "like a light bulb," so the song went like this:

All the other carolers (ATOC): Rudolph the red-nosed reindeer
Mandy: Reindeer!
ATOC: Had a very shiny nose.
Mandy: Like a light bulb!
ATOC: And if you ever saw it,
Mandy: Saw it!
ATOC: You would even say it glows.
Mandy: Like a light bulb!
Etc...

So we finish singing and Mandy goes over to one of the residents to say good-bye. He told her that she had great enthusiasm for the last number. Great enthusiasm, hmmm. I told her that the other residents were probably thinking, "oh, it's nice that someone takes her on a outing."

Well, it's a funny story to me. I didn't promise David Sedaris.

A Request

2007-01-31T15:19:00.000-08:00

I try to keep this blog fairly light and to see the humorous side of things, but there are times when it's just not possible. Colon cancer is a horrible and unpredictable disease (as is cancer in general).

I noticed that my blog page hits have been pretty high for the last couple of weeks despite a lack of updates on my part. I checked out my site statistics which revealed a large number of hits coming from a couple of old links on a blog about another young woman with colon cancer. Because of the dramatic increase in hits from old link, I checked out her blog. She is in the hospital and not doing very well. She is married with two young children and they have basically run out of treatment options.

Please take the time to visit Jennifer Ireland and leave a message of support for her and her family.

Thank you.

Second Parially List-y Update

2007-01-31T14:55:00.000-08:00

Okay, I forgot a couple of things in the last list. Oops.

1. I had a CT scan before Christmas. The results were great. There was no detectable disease. The only abnormality was one slightly swollen lymph node which could likely be due to infection (I still had a severe rash at the time of the scan).

2. I've decide to sell some of my books and clear out the DVDs that are still left from the October 2005 benefits. All of them are listed here (my seller name is "chelenan". If you are interested, you can purchase them through Amazon.com or let me know and we can work something out.

3. I missed my determatology appointment two weeks ago (thank you LA traffic) and finally got in to see the doctor today. He was very happy with the progress we've made with my rash, but wants me to go back on tetracycline for a few months to get things completely cleared up. He also gave me samples of a benzoyl peroxide/clindamycin gel that my insurance won't cover. I'm very hopeful that this will clear up the remaining redness.

I'm working to organize all of my files and medical paperwork before I start classes next week. It stresses me out to have that stack of stuff just sitting there so that will be my focus for the next few days - at least until Superbowl Sunday since anyone who knows me knows how psyched I am for the game. (Ha ha!)

Finally, I want to wish a belated, but very happy birthday to my good friend Desiree! Sorry I missed it, but I hope it was great!

An Update in List Form

2007-01-29T19:07:00.000-08:00

It's been a while since I updated so here it goes:

1. Because of my ongoing problems with low platelet counts which have led to an inability to continue with chemo, my oncologist switched my treatment in December. He put me on Erbitux and Avastin. Both are monoclonal antibodies, targeted therapies that can be administered with a low platelet count. I have been on Avastin since December 2005 with a three month break last summer. This was my first experience with Erbitux. 90% of patients on Erbitux experience an acne-like rash. I had an extreme reaction (what a surprise). My oncologist told me last week that it was the worst he had seen. It was so bad that two Vicodin every four hours did not control the pain. I ruined a number of old tshirts because of the bleeding. I started seeing a dermatologist and it has almost completely cleared up. I still have some remaining redness, but for the most part it is gone. It took about six weeks. I had to stop the Erbitux and I have asked not to restart it. I would consider taking it in the future, but currently, with no evidence of disease, I am not willing to go through the pain and to be stared at everywhere I go.

2. I was tested (back in November, I think) for a heparin-induced platelet antibody and the test came back as a borderline positive. Since receiving the results, I have not had any more heparin (an anti-coagulant used to keep my portacathter clear) and initially there was a jump in my platelet count. Last week I had blood work done again, but my platelets had dropped back down. I was hoping that they'd be up so I could finish my treatment of Xeloda and Avastin, but no such luck. I still can't take any chemo drugs. My oncologist is going to rerun the other platelet antibody test (which also came back borderline positive) to see if that is the problem. We'll see...

3. Since I won't take Erbitux and can't take Xeloda, we've decided to continue treatment with Avastin alone. I will go through two months with Avastin administered biweekly and at that point, I will stop treatments.

4. I have posted previously about my shoulder pain. I went in for a follow-up with my PCP and explained to him that the pain goes away for awile and then it comes back for a few days. He is concerned because I have the pain in both shoulders so he has ordered further testing. I have had more blood tests and some xrays. Next week, I have to go in for a bone scan and physical therapy. I'm not overly concerned about this. I think it's just some inflamation that I keep irritating and I can't take any anti-inflammatory drugs because they all affect platelets.

5. School resumes next week. I am not taking a full time load this semester (although I'm only one credit short). I am enrolled in Preparation for General Chemisty, Introduction to Macroeconomics and Psychology. Unfortunately, I have to miss the first day of classes because there is a student visit day for fall applicants of my graduate school program. I have left a message and emailed the professor trying to clear the absense ahead of time. Otherwise, I'll have to leave the student visit day for a short time to check in at the beginning of class.

I think there were a couple other things that I was going to mention, but I'm drawing a blank right now. I apologize to anyone who has emailed me in the last couple of months without getting a reply. I do still have the emails and I hope to finish responding to them this week.

A Quick Update

2006-12-27T15:23:00.000-08:00

I started a new treatment at the beginning of the month - Erbitux and Avastin, but unfortunately I developed a severe rash from the Erbitux. I had to stop the treatments and see a dermatologist and get stronger painkillers. I missed most of the last week of my classes, but I did take the finals. I haven't looked up my grades yet since I wasn't able to study due to the painkillers. It has improved a lot, but my face is still pretty red and broken out. It doesn't hurt any more though!

I'm in Wisconsin to celebrate Christmas with my extended family and will be heading to Nebraska on the first to stay with my parents for a couple of weeks. I won't have regular internet access until I get there.

I hope everyone had a great Christmas and will have a Happy New Year!

There Has To Be A Plan B

2006-12-02T14:47:00.000-08:00

Thursday morning, one day early, I turned in the supplemental materials for my graduate school application. It is complete and thus begins... the waiting.

I am very optimistic that I will be accepted to the program, but I have still been trying to come up with a Plan B. Today I finally found my second calling.

Professional Cheese Racing!

Such a relief. Not only do I no longer have to worry about finishing my application on time, but I have a backup plan that could be very lucrative. You're jealous, aren't you?!

It's Kristen, You Yokel!

2006-12-01T13:28:00.000-08:00

Kristen at the Getty Museum

Yokel: one who is depicted as talking about "cows, sheep, fields, crops and buxom wenches to the exclusion of all else."

Kristen, I beg to differ.

Did you know that Bumpass, Virginia has an ice scream spoon factory. There is something new out there to learn everyday, Friend.

I Wonder What The Street Value Is?

2006-11-30T16:55:00.000-08:00

Who goes to the doctor complaining of shoulder pain and has to have blood tests done?

That's right. It's me!

I had an appointment with a new doctor this morning. My primary care physician left UCLA last June so I've just been avoiding any general-type appointments. Unfortunately, my shoulders feel like they are going to fall off. Every time I lift my arms up, I get shooting pains from my shoulders down through my upper arms. Ouch! I would have just taken ibuprofen for a few days, but being on coumadin and with my little platelet problem, I am not allowed to take ibuprofen or aspirin or naproxen sodium (Aleve). All I can take is Tylenol. So I made an appointment.

The doctor was very nice, but he asked SO MANY questions: Do you have any heart problems? Is there any history of colon cancer in your family? Did you know that there is a gross mascara glop in the corner of your eye? Okay, so he didn't ask the last one, but I bet he would have if there actually was a gross mascara glop in the corner of my eye. He was just that thorough.

Then there was the physical exam where I kicked and pushed him. He was asking for it though. Seriously. And he finally concluded that I have too much wax in my right ear. Not that the wax is causing the shoulder pain, but he couldn't see into my right ear. Actually, he thinks that my shoulder joint is just inflamed and it will just take some time to heal... and I have too much wax in my right ear. He ordered blood tests to make sure that there's not a problem with muscle degeneration - there's really a blood test for that.

Until the inflamation clears up, he prescribed Vicodin for the pain. I'm not a big fan of Vicodin. I feel really foggy when I take it, so I avoid it. I could use some extra money though. Hmmm... I wonder what the street value of this stuff is?* I'll send out my broker to sell the stuff.

My Broker

If you squint a little, that kind of looks like my roommate. Interesting.

*I am kidding about this. I will not sell my Vicodin... or my Ativan or my Xeloda - of course, no one actually wants my Xeloda. Chemo is not that attractive for the non-cancerified.

I Know How To Clear A Room

2006-11-28T14:47:00.000-08:00

A perhaps little-known fact - the intestines are so tempermental that after they are handled by a surgeon, they "go to sleep." After a surgery that has required such handling, the doctors will not let the patient eat anything until they have "passed gas" which indicates that the bowels have woken up.

When I had my partial colectemy (removal of a section of the colon) last year, I was not allowed to eat for a week. Every day the doctors and nurses would use their stethoscopes to check for sounds in my intestines. And every day they would say that it was getting close with a look of anticipation. This milestone would be something to celebrate.

Finally, the day arrived. I farted! Now it should have been time for that celebration, but think about this: I released gasses that had been trapped in my intestines for a week. I was in my hospital bed and my mom was standing next to me. As I was slowly overcome by the disgusting smell, I quietly said "excuse me" and my mom's first instinct was to take a deep breath... THROUGH... HER... NOSE! She hadn't noticed the horrific smell that filled the room. Her reaction can only be described as spastic. She visible shook at the foul odor. I couldn't stop laughing and believe me, laughter a week after colon surgery hurts a lot. It was by far my favorite moment (if you can have a favorite moment in the hospital) of that hospital stay.

If you are wondering how the doctors reacted to the news, they applauded.

[And Mom, this is revenge for Saturday's email... you'll think twice before you remind me how long it is until Chrismas again! : ) ]

One Step Forward, 13 Steps Back

2006-11-26T14:13:00.000-08:00

Last Monday, I went in for my weekly blood tests. As you may remember, I am waiting for my platelet count to reach 100 in order to finish up my last few sessions of chemotherapy. The last couple of weeks have shown improvements... very small improvements, but this week was completely unexpected.

Yes, that's right. I went from a count of 73 on November 14th to 60 on November 20th. That is not the direction that I want the numbers to go. On the bright side, that does seem to support the idea that the Avastin is contributing to my ongoing lack of platelets. We have been continuing the Avastin treatments every six weeks because most patients have no problems with their blood counts on this drug. (It is a monoclonal antibody (biotech drug), not a chemotherapy drug.) As a matter of fact, less that 10% of patients on Avastin have problems with low platelet counts. Who's in that minority? It's me! I am having an extra blood test ordered this week for the heparin-induced platelet antibody. I have already been tested for another platelet antibody and the test came back weakly positive so it is unlikely the cause for the low counts. I'll have to wait a while to get the results of this second test. It takes a couple of days instead of 30 minutes like most of my labs.

My INR is still low as well so the oncologist covering for Dr W increased my dosage of coumadin again. I'm alternating between 10mg and 12.5mg per day. She suggested that I talk to Dr W about switching to Lovenox since it has been so difficult to keep my INR levels theraputic. I'll talk to him about it, but I am very much against the idea. Lovenox is a daily injection and I don't want to do it. I have come very far in getting over my needle phobia, but at this point, I do not want to try self-injections. So there.

And I do have to acknowledge that I am a total dork because I really like putting together a graph to illustrate my platelet counts. Seriously though, doesn't it help you get a better overall picture of what has been going on? If I had more time, I'd do more graphs for all different kinds of things, but free time is scarce and Christmas is coming which means there is lots and lots to do.

I Am Around And Doing Okay

2006-11-22T07:17:00.000-08:00

Just a really quick post to let everyone know that I'm doing fine and I am still around. My internet connection over the weekend was spotty at best and out of frustration I stopped posting. I will get back to my regularly scheduled posts ASAP. I have class most of the day today, but I'll try to write an update this afternoon when I have a break. Until then...

Reconnected To The World

2006-11-16T23:01:00.000-08:00

My broadband connection is finally fixed!!! I feel like I have managed to accomplish so much since it started working this afternoon. There were so many little things that I wanted to get done, but I did not have the access that I needed.

I planned to write more today since I can finally post in a timely manner, but then I got sidetracked after posting all of my saved posts. Now it is almost time for bed and I have not written yet. Oops!

I am almost done with my grad school application. I just have to finish revisions on my statement of purpose once I get my feedback. It should be done soon and then I can drop off all of the supplemental materials. Yea!

While I am off to bed. Good night!

There Are Stupid Questions *

2006-11-15T17:00:00.000-08:00

I get very frustrated in my classes (especially Economics) when students can't answer questions when the professor has just given the answer. I also get frustrated when people ask questions that have nothing to do with what we're currently discussing. I don't like it when students interrupt the professor or other students mid-sentence. I have no problem with students who don't understand something the professor says and are asking for further clarification, but otherwise I am pretty intolerant when it comes to other students wasting time in class. I had similar feeling when I was pursuing my undergraduate degree, but not to the same extent. I've become overly judgemental about the other students in my class. I think that some of it just has to do with age/maturity difference. I'm at a community college with students who basically range in age from 18-20.

There are some students in my classes who seem very intelligent, but most of them just aren't taking these classes very seriously. Considering that a large number of them are hoping to transfer into the UC and the CSU systems for four-year degrees, they should probably get their acts together.

(As a side note) Where I grew up, if you graduated from an accredited high school in the state, you were guaranteed acceptance into the state's university system. Here in California, the state schools are actually pretty competitive.

*Written 11/15/06; Actually Posted 11/16/06

At This Rate It'll Be May *

2006-11-14T13:00:00.000-08:00

I had an 8am appointment this morning for treatment. Ordinarily with appointments from 7-8am, I only need 30 minutes of travel time, but from 8:30-10:00am, I give myself an hour. This morning, I left an hour before my appointment and I was 15 minutes late. Traffic was so backed up. I hate being late for appointments although they are really flexible about it in the treatment center. If it was a surgical follow-up, I could have lost my appointment. When I left the Medical Plaza at 10:30am, I expected to get home in about 30 minutes. It took almost an hour. Most of the time, I try not to let traffic get to me here in the land of the eternal traffic jam, but today it was just grating on my nerves. I was so relieved to get home!

So what are the numbers? First, I did get my dose of Avastin so that was a good bet. My INR has dropped down to 1.4 (we're aiming for 2.0) so I'll have to contact the doctor covering for Dr. W to see about changing my coumadin dose. And now the moment you've all been waiting for...

My platelet count is...
73.

If you're keeping track, it was 72 last week and 70 the week before. It is going up, but very slowly. I need to hit 100 in order to receive chemo and at this rate it'll be almost May before I can restart treatments.

For those of you who prefer a visual display, I'll bring back the bar chart next week. It should be fun. (I might have to spend some time redefining my idea of fun.)

*Written 11/14/06; Actually Posted 11/16/06

Addicted To Code Blue *

2006-11-13T16:30:00.000-08:00

I've developed a strange fascination with the Discovery Health Channel - especially the shows Code Blue and The Critical Hour which takes place in various emergency rooms/trauma centers across the country. I'd link to a website for one of them, but they don't seem to be working. I did stop watching an episode of The Critical Hour when a patient came in who had a wrench impaled through his arm. He had been driving and the car in front of him ran over the wrench and it flew up in the air. I don't know if his window was open or if it broke through the window, but somehow it was through his arm. I wish now that I would have watched the rest of the episode though because I want to know what happpened. I'm sure that they'll rerun the episode.

I received my grade today for the test I took last Wednesday and I did really well. I managed to bring my grade up to a solid A, but there is still one more test and it's worth 40 percent of our final grades in the class.

Tomorrow morning I have to go in for a blood draw. Any bets on where my platelet count will be? I think that I'm also getting a treatment of Avastin because although we have put chemotherapy on hold, Avastin is a monoclonal antibody, not a chemotherapy drug. Any bets on whether or not I'll get it? And while we're taking bets, any on where my INR will be? Stay tuned!

*Written 11/13/06; Actually Posted 11/16/06

I Swear No Kittens Have Died

2006-11-12T18:22:00.003-08:00

My internet connection went on Thursday night. They still have not fixed it, but it should be back up by tomorrow night. I have been composing posts, but they are saved on my computer and I am posting from a friend's computer right now. I will post them all as soon as I can with each of them dated back to when I actually wrote them with acknowledgement that I manipulated the dates. If that takes me out of competition for the prizes, I understand, but for myself, I am going to have posts for each day this month.

I have some other things that I have to take care of while I have the temporary access to the internet, but I am very hopeful that the remainder of my posts will be up tomorrow night!

Saving The World From Alien Invaders *

2006-11-12T13:00:00.000-08:00

I have an assignment for my Economics class tomorrow. It is an online assignment that is not officially graded, but if I don’t get it done by tonight, the answers post and I won’t be able to do it myself. I find these assignments very helpful to understand the concepts in the class, but MY INTERNET CONNECTION IS STILL NOT WORKING. I have to go out to a coffee shop in order to get this done now. Plus I have several emails that I really need to get sent out, not to mention a bunch of posts that I need to post. I hope that I can get it all done. I’ve finished my first “public” draft of my statement of purpose – meaning I’ve rewritten it many, many times, but haven’t let anyone else read it up until now. I just need to get it emailed to the people who are going to give me feedback.

I had a weird dream last night that the world was taken over by aliens that resembled an octopus. It’s okay though because I was going to save the world, but then one of my oh-so-considerate neighbors decided it was dance party time and I woke up. What’s even stranger than last night’s dream is that it was the second dream I’ve had recently about saving the world from alien invaders. Hmmm.

Now I’m at the coffee shop with the free WiFi, but I can’t get it to work on my computer. It is just not meant to be. I may go across the street to the library, but I don’t know if they are even open today or if they have internet access available. This sucks!!! I could go try another coffee shop, but then I have to pay for another drink that I don’t need and I know that some (Starbucks) charge for WiFi access and I’m not willing to pay for a drink and for access. I think Panera Bread has free WiFi, but they’re always so busy on the weekends. At this time (1:30) on a Sunday afternoon, they are probably packed.

*Written 11/12/06; Actually Posted 11/16/06

Sleepy Time *

2006-11-11T15:30:00.000-08:00

No internet access. Robert called this morning and they are running tests on the line but still no word as to what is wrong and what needs to be done (NOW!). I can’t tell you how many times in the last two days I’ve gotten up to check something “really quick” on my computer only to remember that I can’t do that right now. I’ve become so dependent on the internet for information.

I’ve been sleeping much better this week. Most nights I’ve fallen asleep without taking anything. No Ativan! No Ambien! And I’ve been staying asleep for the whole night. I actually feel rested, I think. It’s been so long that I’m not really sure what “rested” feels like anymore. I wish that I could keep myself on a regular sleep schedule, but I have a really hard time falling asleep before midnight. That’s not bad five nights a week, but the two mornings I have to get up at 6:30 am make it painful. I don’t nap because it makes it too hard to fall asleep at night. My natural sleep cycle is 1am-9am (or 10am). That is what I consistently fall in to when I don’t have to be anywhere early in the morning.

*Written 11/11/06; Actually Posted 11/16/06

I’m Going Through Withdrawal *

2006-11-10T23:30:00.000-08:00

Well, still no internet access. I’ve decided to continue to write my posts in Word and I’ll back date them when I enter them into Blogger. I’ll mark each post that is back dated and if that eliminates me from prize eligibility, then so be it.

I saw Borat today. I laughed so hard that my throat hurt at the end of the movie. There were some very uncomfortable and disturbing parts. It makes me sad to see how incredibly prejudiced and racist people can be.

I miss my internet!

*Written 11/10/06; Actually Posted 11/16/06

Nooooooooooo! *

2006-11-09T23:30:00.000-08:00

I’m writing today’s post in Word because I can’t get my internet connection to work. I’ve rebooted the computer… twice. I’ve rebooted the wireless router. I’ve disconnected and reconnected and the browser still says that it can’t find the servers. I’m really frustrated because I really want to complete the 30 day NaBloPoMo challenge and now if I can’t get this connection to work in the next 45 minutes, I won’t have a post for today. I’m too frustrated to even think of a post topic other that posting about how frustrated I am. Except that I’m not really posting, I’m writing in Word and will likely not be able to post this until tomorrow.

Okay, I’m going to try rebooting the router again… nothing. UGH!!!!!!!!!!!!

*Written 11/9/06; Actually Posted 11/16/06

The One Where I Praise My Own Intellectual Prowess

2006-11-08T16:12:00.000-08:00

Bright and early this morning I had an exam in US Government. I had done all the readings and taken notes in lectures, but I didn't start officially studying until last night. [This procrastination has a lot to do with not liking the couse which has a lot to do with the professor - I actually find the subject matter interesting.] Of course, I panicked when I started studying, thinking that there was no way I was going to remember all this information. The test is in essay form and is worth 30% of our final grade. We can write a paper to replace a low test score, so I kept that in the back of my mind, but I don't really want to spend my free time the next few weeks writing a research paper. Despite this, I took a "quick" break and watched Heroes, Studio 60 on the Sunset Strip, the Simpsons, Family Guy and American Dad with my roommates. I reviewed my notes before I went to bed and then again before class this morning.

I took the test feeling like I probably hadn't prepared enough, but then I started reading the questions. I actually remembered the answers. I know the constitutional standards that must be applied to death penalty cases. I know which parts of the Bill of Rights (and the Fourteenth Amendment) were cited in the Supreme Court decision that established our constitutionally implied right to privacy. I even know the structure of the California State Legislature. I left the class feeling like I did a pretty good job on this exam. The truth will come when I get it back with a grade on Monday.

I'm tired this afternoon and I still have one more class tonight so I'm going to take a risk and take a nap. Naps are risky when you're having problems with insomnia. Wish me luck.

I Must Save The Kittens

2006-11-07T14:39:00.000-08:00

I realized a couple of thing while I was trying to fall asleep last night.

First, I didn't acknowledge how completely dorky it was of me to post a bar chart of my platelet counts. The whole reason that I posted it was because I thought it was ridiculously funny, but then I just left it there without acknowledging it like I was serious which in a way makes it funnier, but also a little bit sad. [And speaking of sad, Books Written For Girls posted the lyrics to Bust A Move. It's okay though, we can be sad together!]

Second, I haven't posted anything about why I'm posting every day this month. I signed up for NaBloPoMo. It stands for National Blog Posting Month which is being organized by Fussy. There are a number of different logos that have been posted, but my favorite is this:

It is from claw-less and it appeals to the sick and twisted side of my sense of humour.

Tomorrow is my crazy schedule day. My first class is at 8am (and I have a test) and my last class ends at 9:55pm. I have some gaps of time off in between, but it is a really long day. I have a test first thing in the morning so I need to study. Since it's almost 4pm, I should stop procrastinating and get busy.

Platelet Spelled Backwards Is Teletalp

2006-11-06T23:39:00.000-08:00

Today I had blood test number five in the ongoing chronicle of my low platelet count. As you may recall, a "normal" platelet count is between 150,000 and 400,000. For chemotherapy treatments, a count above 100,000 is necessary.

On October 24th, I was almost there... just a paltry 7,000 away. If only I could have reached a little further. I could have gotten my next treatment. I could have received it before the downward spiral into... into... not being allowed to receive it. I was so close and now I'm so far away. What surprises await me next Monday (or possibly Tuesday) when I take my next blood test? Stay tuned for The Rise And Fall A Little And Fall A Lot And Rise A Little of Christine's Platelets.

Why is it that I seem to spill something on my shirt when I have no opportunity to change it any time in the near future and I have lots of errands to run and people to see and I have to walk around looking like a slob because I'm 29 years old and haven't learned to eat and drink without making a mess of myself unless it's water that I'm drinking because I never seem to dribble water on myself since that wouldn't show anyway anymore once it dried? Do you have an answer for that, smart guy?

[I must be feeling a little antagonistic today.]

If you use the Google search engine and type in any of the following phrases, my blog is one of the first three sites that will be listed:
Stupid Steroids
How to Look and Act Cool
Magical Christmas Tumor

Weird, eh? And someone in Croatia accessed my blog today. Random.

Perhaps There's Nothing To Say

2006-11-05T11:23:00.000-08:00

I've tried about three different topics and I have come to the realization that I have nothing to say today. I have lots to do, but nothing to say about it. I need to get all of my studying done that requires computer access because I want to get out of the apartment for a while and study somewhere else. I have a party to go to at 5pm and I'm busy all day tomorrow.

I think my brain is fried!

Insomnia, Hypertension, and Subtitles

2006-11-04T12:59:00.000-08:00

I had a horrible time getting to sleep again last night, but fortunately there was a "Full House" marathon on Nick at Nite. I really did look for something else to watch, but once you hit 3am, most stations have gone infomercial.

A few days ago I was talking to my roommate Jim about the Scottish dialect. For me, out of all English dialects, it is the most difficult to understand. When I studied in France, my program director was Scottish. I didn't have a problem with him, but we generally spoke in French and he was also fluent in German and Russian so I think his Scottish dialect was a little diluted. When we went to Paris, he invited his aunt and uncle to join us. They were very nice people, I think. While riding the Metro, I had a long conversation with his uncle, but to this day, I have no idea what he was talking about. I just smiled and nodded, trying to pull out any words that I could recognize. That converation was probably the most difficult I had in France. I had less trouble speaking French!

Last night in the midst of my insomnia I turned to a movie on the Sundance Channel. Riff Raff is a Scottish film from 1990. This film is in English with English subtitles. They leave out most of the slang and in some places actually "translate" the dialogue. One of the characters referenced "high blood pressure" and in the subtitles, it was translated to "hypertension." Does anyone else think that's really weird? I know that it can be difficult to understand, but a film in English subtitled for English speakers... and poorly subtitled at that.

It reminds me of a French-Canadian film, Jesus of Montreal, that I watched in college. The film was in French with English subtitles. It became weird when the characters started speaking in English which was subtitled into French which was subtitled back into English. At one point, a character said "cool" which was translated into French as "cool" and then translated back into English as "cool." It's a little bit of overkill.

Sometimes I think it would be nice if we could turn on subtitles for the people around us. If you're tired and don't really want to listen, you could mute them and turn on the subtitles. It would be a nice, quiet conversation. Or if you're just having a hard time understanding someone and you don't want them to have to continue to repeat themselves, turn on the subtitles.

"Itslk a snicker vact!"

"Pardon?"

"Itslk a snicker vact!"

"I'm sorry, I don't understand what you're saying. Let me turn on the subtitles."

"Itslk a snicker vact!"
It's like a sneak attack!

"Oh, I got it now, but what on earth are you talking about? A sneak attack, pshaw!"

And so it goes...

Memorable Gifts

2006-11-03T17:00:00.000-08:00

When I was in the hospital this summer, I received a care package from one of my really good friends. My parents brought it to the hospital and helped me go through it, but I only have the slightest memory of this. Instead of leaving it with me, they brought it back to my apartment and it wound up getting stashed under some other things. A couple of days ago, I came across the box and was suprised by the contents. It was an awesome assortment of random things that would total brighten your day. A couple of my favorite items are the Good Vs Evil Unicorns and the Pirate Playing Cards. She rounded out the package with really practical items (that had found their way out of the box) like slippers and lip balm. How can you not want to be friends with someone that thoughtful?!? In case I didn't say it before, thanks Jen!

I was going to post about some of the other "get well" gifts that I have received, but then I realized that I was just procrastinating. Tonight, I am going to immerse myself in my statement of purpose for my grad school application. I want to have a few people review it and have time to do more rewriting, so I need to get this draft done. I'm still not happy with how it's flowing and there's still more information that I was to get in there. It's already almost three pages. Wish me luck!

Link for today:
Great Story!!!

Focus On Something Else

2006-11-02T16:54:00.000-08:00

I have met countless doctors during the last 18 months and I have been impressed with almost all of them. They have listened and treated me like a person. They seem to really care. Unfortunately, I had a really bad experience with one doctor a couple of weeks ago.

As I have mentioned before, I still have an open tract from the infection that followed my surgery. It is tiny, but it's not healing. I went in for an appointment two weeks ago expecting to have the tract fixed. I had been told at my last appointment that if there was no progress in healing, they would go in a take out the stitch at the bottom. Unfortunately, I did not have the same doctor at this appointment. Instead I met with a doctor who I had seen on prior occasions, but I never felt like he took me seriously. I mentioned to him that I was supposed to have the tract fixed. He told me he wasn't going to do anything. He didn't think it was a good idea. Frustrated because I have had an open wound since August of LAST YEAR, I started to cry. He then informed me that I shouldn't cry ever time I come in. I asked how long I would have to wait before he would be willing to do something. He told me that he couldn't give me a time line and the tract would heal by itself and "you have other things going on in your life, like school. You should try focusing on that and not make such a big deal out of this." I was shocked. I have never been dismissed by a doctor like that. I was so upset, I didn't know how to react. By the time I got home, I was angry. I called my doctor's office and left a message saying that I didn't was to see this other doctor again and that I needed to talk with one of the doctors from my surgical team.

I went back yesterday and I met with one of my surgeons who actually sat down and talked with me about what needed to be done. We're still waiting on doing any kind of procedure to close the tract, but there is a plan and he actually listened to me. I felt much better when I left yesterday.

I should do something about the way I was treated. Someone suggested that I write a letter, but at this point, I'm not comfortable with that. I may still run into him in the hall when I go for my follow-ups. Maybe once I've been discharged as a surgical patient. But I can guarantee that I will not be meeting with him again. If he comes into my room, I will demand to see someone else. That's non-negotiable.

How Generic

2006-11-01T16:57:00.000-08:00

I have spent the last fifteen minutes trying to come up with creative ways to say all this crap. I couldn't come up with anything unique (don't even ask about my failed poetry attempt), so I'm doing a top ten list.

Top 10 Crappy Things I'm Dealing or Have Dealt With This Week
10. We watch the movie "Halloween" last night. Not scary!
9. My "service engine soon" light came on. I'm hoping it's due to condensation. If it is, it'll go off in the next couple of days.
8. My rent went up today. Stupid LA with it's high cost of living.
7. I got an "A" on my Economics test from Monday. Good news, right... it is only an "A" because the professor curved the course, not just the test, the ENTIRE course. Anyone who gets about 40% passes.
6. The more time I spend on my personal statement for my grad school application, the more I feel I'm not getting across the points that I want to make.
5. I watched two hours of "Saved By the Bell" reruns last night because I woke up at 2:15 and couldn't get back to sleep.
4. This one sucks too, but I'm not telling anyone what it is.
3. My platelet counts have dropped lower (to 70,000).
2. Because of the continuous platelet problem, chemotherapy is on hold.
1. I still have an extra hole in my stomach.

On the bright side, Wednesday is my Friday and every weekend is a four-day weekend. Now if I could just get the "Saved By the Bell" theme out of my head.

Edit: I forgot to mention that I received my final GRE scores and I'm not all that happy with them. Ugh!

Edit #2: The "service engine soon" light went off!

Available By Email

2006-10-29T22:00:00.000-08:00

I originally started this blog to keep family and friends updated about my treatments and tests. I hadn't intended for it to spread beyond that, but it did. I grateful for that because it has given me the opportunity to reach out to other people in situations similar to my own. I enjoy having this blog and would like to continue with it, but I can't guarantee that I'll post every day (except in the month of November, but that's a topic for another post).

About once a week, I either get an email asking me if I'm doing okay because I haven't posted or a friend or relative mentions that I haven't update my blog - this usually includes a mention that they check it daily. I know that I didn't post much over the summer (I did spend 32 days in the hospital) and my posts this fall have been sporadic. The good news is that you don't have to check for updates daily. I have a subscription service that will email you my posts. All you have to do is sign up by entering your email address in the box on the right and make sure that you can receive emails from CCSucks@gmail.com (this is my personal account). You'll have to confirm your subscription and you can do so when receive an email with the following text from confirmations@emailenfuego.net:

You recently requested an email subscription to The Latest from Colon Cancer Sucks Ass. We can't wait to send the updates you want via email, so please click the following link to activate your subscription immediately:

http://www.feedburner.com/fb/a/emailconfirm...

As soon as your subscription is active, FeedBurner will send a daily email
message if The Latest from Colon Cancer Sucks Ass has new content.

If you did not request this subscription, or no longer wish to activate it, take
no action. Simply delete this message and that will be the end of it.

Posts are emailed the day after they are posted. To those of you who already have subscriptions: I moved my blog over to the blogger beta site yesterday and that is why you received an email with a bunch of posts. To those who have signed up, but never confirmed membership, I will email you once I've deleted your subscription and you'll need to sign up again.

Feel free to keep checking the site for updates if you'd rather not receive them by email.

Thought For The Day (because I couldn't find a good post about it):
Is Fergie singlehandedly hurting the feminist cause (and cracking the already damaged self-esteem of adolescent girls) with songs like "My Humps", "London Bridge", and "Fergalicious"?

What Goes Up Must Come Down

2006-10-28T21:11:00.000-07:00

I am indefinitely on hold for my next chemotherapy treatment. As I posted here, my platelet count has been running low, not dangerously low, but too low for treatment. The normal range for platelets is between 150,000 and 400,000. On the 16th, my count was 75,0000. By the 24th, it had climbed to 93,000. Unfortunately, by Thursday, it had dropped to 83,000. In order to received treatment, my platelet count has to be at least 100,000.

My oncologist has assured me that the treatment delay isn't a big deal. Since we're not treating any visible disease, an extended dealy will not have the same adverse effects as were possible when there were visible active tumors.

On Monday, I will go back in for more extensive blood tests to see if we can pinpoint the cause of my lower platelet levels or at least eliminate any potential problems. Most likely, it is just due to the amount of chemotherapy I have had this year combined with major surgery. According to my research, it is a known potential side effect of the drugs I have received.

I'm not going to worry about it. There's nothing that I can do to elevate my platelets and I don't believe that anything is seriously wrong (at least nothing new). My white cells and hemoglobin are just under normal levels. I'll just wait and see what the numbers are on Monday.

Daily Link:
I can't wait until I have the chance to see this!

Jumping Through Hoops

2006-10-26T10:05:00.000-07:00

Among the projects that have been taking up my time is my application to graduate school. It's been so long since I applied to college that I had forgotten the amoung of work that goes into an application. I took the GRE last week. I think that I did pretty well although I don't have my exact percentiles or my essay scores yet. In between classes and appointments, I have been working on my personal statement (or taking a daily spelling test - I know, I'm a nerd). It's a lot of work.

I've also been working on the financial aspect. If I get into the program, I'll need a way to pay for it. That's a lot of work too.

I'm still waiting to hear back about my blood test results... will I be able to start my next round of chemo soon? Stay tuned to find out!

Link for Today:
Ben Stiller Pillow
Disturbingly realistic. . .

Conversations With Myself

2006-10-25T22:39:00.000-07:00

I finished my first round of my new chemotherapy two weeks ago today. I'm supposed to take the pills twice a day for two weeks and then I get one week off.

But wait, Christine, shouldn't you have started the second round a week ago?

That's quite an astute observation. Yes, I was scheduled to start the second round last Wednesday; however, my platelet count was low so my oncologist recommended that I take an extra week to recover.

But wait, Christine, doesn't that mean you should start the second round today?

Wow, you are an observant one, aren't you. Yes, I should have started the second round today; however, I had a blood test done yesterday and lo and behold, my platelet count is still low.

But wait, Christine, when will you get to start the second round? I don't like it when they mess around with your carefully planned schedule.

I'm not sure why you insist on starting with "but wait, Christine" every single time you open your mouth, but I do appreciate someone understanding how much I hate having my schedule messed up. At this point, I do not know when I will start the second round. I have to go back in tomorrow for another blood test.

But wait, Christine. . . oops, sorry! Habit. You really are an amazing person to put up with all of this crap.

I know.

Link for the day:
Bad News Hughes Diary of Manly Adventure

Quotes for Today

2006-10-22T15:17:00.000-07:00

"I think makin' bacon is the first step toward unity."

"The biggest room in the house is the room for improvement."

"Mr. T believes in love people."

-Mr. T on his new TV Land show I Pity the Fool.

Time Flies

2006-10-01T19:16:00.000-07:00

I can’t believe that it’s October already. There was so much that I wanted to get done in September and almost as much that I didn’t manage to get done.

I have started taking classes at a local community college. I’m trying to get a few more social science and lab science credits to round out my undergraduate education. I’m applying to a master’s program for next fall. These classes are much more work than I had anticipated and I am taking a full load (12 credits).

I’m still healing from my surgery in July. There is still a hole that hasn’t healed yet from having the infection lanced in August. My energy level is getting better, but I started a new chemo on Wednesday so that might be the end of that. I switched to a pill form called Xeloda because my research showed that it was better tolerated and with classes and the GRE, I just can’t be out of commission for three days every other week.

I want to thank everyone for their concerned emails. I have a few more crazy weeks, but by November I should be able to post more regularly. Until then, I’ll do what I can.

This Has To Be Over Soon

2006-08-22T17:29:00.000-07:00

I had planned on doing a more thorough update about my hospitalization, but I was feeling so exhausted and just not quite myself until last Wednesday when they discovered an infection in my incision. They lanced it, leaving me with a second open wound in my stomach, and sent me home. By Friday, the infected wound looked so bad that my mom called the doctor who wanted me to come to the ER. I told my mom that if we went to the ER, they would admit me to the hospital and she didn't believe me. By Friday night, I was being admitted for IV antibiotics and observation. I was released this afternoon. I am feeling much better now and I'm hoping that the two open wounds will close up soon and that I can get back to normal. We'll see...

I'm Finally Home

2006-08-07T18:56:00.000-07:00

Yes, I have actually been in the hospital recovering from surgery for the last 28 days. There were a number of complications - almost all minor, yet they couldn't release me until they were taken care of. I'm exhausted and I promise that I will post more details later, but for now I need to rest. I am doing really well. My liver function numbers are normal and it has already started to regenerate. They were also able to remove all the cancer so I should but without evidence of disease.

I Have To Be There When?!?!

2006-07-10T16:12:00.000-07:00

My liver resection is tomorrow morning. I had to call this afternoon to find out what time I have to report to the hospital. They want me there at 5:15AM!!!! That is so early. I'll have to get up at 3:30 to be ready on time. At least I know I'll be sleeping most of the day anyway.

I'm scheduled to be in the hospital for 5 days so it'll be a while until I'm able to update again.

Later!!!

My Heart Will Go On

2006-07-07T22:57:00.000-07:00

Wednesday morning I had my much anticipated, oh-so-stressful, stress echo test. As weird as it may seem, I had been more worried about this test than the major surgery next week. I just really didn’t want to do it. Having been “sick” for almost a year, I’m not in great shape – my endurance is really low. I was sure that I was going to humiliate myself running on the treadmill.

The test was in the 100 Medical Plaza building – most of my appointments are next door at the 200 building. The 100 building seems much fancier. I found my way to the cardiology suite and checked in. I was given several forms to fill out. Before I was able to complete them, I was called back for the test. The technician lead me to a room in the rear of the suite containing a treadmill with a large machine next to it as well as some ultrasound equipment and a bed.

I changed into a hospital gown – I love those things – that opened in the front. Then the technician stuck a bunch of electrodes all over my chest and had me lay down on the bed. Then she preformed an ultrasound on my heart which was actually cool since I was able to see the screen. I was able to see my own heart pumping.

Then came the portion I was dreading… the treadmill. A nurse came in to monitor the test and a blood pressure cuff was attached to my arm. I was told that I needed to reach a target heart rate of 171 beats per minute. Any time that I felt that it was time to stop, that I couldn’t go on, I was to let them know. They would then help me off the treadmill and I would go straight back to the bed for another ultrasound. Every three minutes, the speed and incline of the treadmill would increase and they would check my blood pressure periodically.

The treadmill started. The first level was a fairly brisk walk, but nothing that I couldn’t handle. My heart rate only went up to 150 beats per minute though. After the three minutes, it sped up. I was still able to walk and my heart rate went up to 165. Three more minutes passed and the speed increased again. Again, I was able to walk, but I could tell if it increased any more, I would have to start running. I was also starting to get really tired. I watched the monitor as my heart rate passed by the 171 target and went up to 180. After a minute, the nurse said that they had gotten the necessary data and to let them know as soon as I needed to stop. I made it about another minute. The treadmill stopped and they rushed me to the bed and performed a second ultrasound. Finished!

The technician brought me to an exam room to wait for the cardiologist. About an hour later (that is NOT an exaggeration), she came in with my results. My heart is completely normal for a 29 year old woman. She gave her complete go-ahead for the surgery and said she would write a glowing recommendation for the surgeons.

Well, that’s one less thing for me to worry about!

See, I Said I Would Be Back...

2006-06-29T20:48:00.000-07:00

I returned from my Midwestern adventures on Monday afternoon and have been in recovery mode ever since. I had a really great time. Both weddings were fabulous and I got to spend time with lots of old friends and family. I said I would come back with lots of stories and I did, but I'm still too tired to organize my thoughts!

I do have a couple of updates on the health front. My surgery has been rescheduled for July 11th (postponed one day). I need to have a stress echo done and they scheduled it for today, but I already had an appointment today that I could not put off. The stress echo was moved to July 5th, but there has to be 5 full days between the test and the surgery. For those of you unfamiliar with a stress echo, they attach a bunch of those little white disks (electrodes?) to your body and make you walk on a treadmill while they observe how your heart handles the pressure. Sounds like a lot of fun, doesn't it? After the test, I'll see a cardiologist to go over the results and decide what, if any, regimin of lovenox injections I'll be on since I'll have to stop taking my other blood thinner.

I may have an endoscopy next week as well, but this is still up in the air. The purpose would be to determine if the mass in my colon is cancerous or if it's scar tissue. If it is scar tissue, then nothing needs to be done (no colon resection!!). Dr W is supposed to call Dr C to discuss this, but I think Dr C is on vacation this week. We'll see what happens.

I also received the results of my hormone tests today. The levels seem to be pretty normal which means I'm probably not menopausal. My internist wants me to see an endocrinologist to go over the tests in more detail so he gave me a referral today. I'd be surprised if I can get in before my surgery, but I'll call tomorrow to make the appointment.

Oh, one last thing... and it's good news. I met with Dr W on Tuesday and we discussed how much chemotherapy I will get after surgery if everything goes according to plan (e.g. my next CT scan shows no evidence of disease). He think that I only need to do two more months of chemo! That means that I could be done (at least for now) in October!!! So let's all hope that everything goes according to plan.

I'll Be Back!!

2006-06-15T21:18:00.000-07:00

I've been really busy this week. My roommate Jim and I had a big birthday celebration in San Diego Sunday with our friends. I spent the rest of this week recovering and frantically trying to get ready for my big trip. I'm leaving tomorrow to attend my friend Jen's wedding in Minnesota and then heading to Wisconsin to visit my family and attend my cousin Erin's wedding. My internet access will be limited until I get back on the 26th. I don't know that I'll be able to post between now and then, but I'll come back with lots of stories!

A Brief Lesson About Liver Resection

2006-06-09T23:53:00.000-07:00

Now that I've been cleared to have my liver resected, I've started doing some research about the surgery itself. Here are a few interesting tidbits that I've come across (I have not verified all of these so they may or may not be true - if I find out that any are wrong, I will post a correction):

Typically, it takes 5 to 6 weeks to recover completely from the surgery.

It only takes 6 to 8 weeks for you liver to regenerate to its pre-operative size!

The median number of days patients are hospitalized post-surgery is 6.

If they remove the right lobe of the liver (as they are doing in my case), they also remove the gall bladder since it is attached to the right lobe. - I'm particularly excited about this one because I already know that I have gall stones, but they are currently inactive; however, with my family history of horrible gall bladder problems, I would rather they just take it out!

They can remove up to 70% of your liver and it can still perform the normal functions. (I've also seen 60% and 75%, but 70% seems to be the most common.)

My surgery is scheduled for July 10th. They will be removing the entire right lobe of my liver and a small portion of the left. I may have my colon re-resected at the same time. On the last CT scan there was a spot at the operative site. I can't get an appointment with my original surgeon Dr C until July 7. I'm going to discuss it with Dr W on Monday. After recovering from the resection, I will likely go back to chemo for 3 to 6 months to make sure that any rogue cancer cells are destroyed. I'll also discuss that with Dr W on Monday.

The Best Possible Scenario

2006-06-07T18:28:00.000-07:00

I have had many medical appointments over the last year. Some of these were just standard appointments updating prescriptions and going over current chemo side effects. Others were more serious and caused me a significant amount of anxiety. As much as I would try not to, I couldn't help but hope for the best possible scenario. I would try to count of the worst and hope for the best, but I always knew that I was unprepared for whatever news that I got. At some appointments, I received good news and at others, bad news, but I never received the best possible news... until today!!!

I met with the liver surgeon Dr B this afternoon and he didn't even hesitate in agreeing to do a liver resection. Good news! He wants to do it as soon, after I've been off chemo for a month. Even better news! I have to stop chemo now... no chemo treatment next week. Great news! This was actually better than I could have hoped for. I had never even considered that I might stop chemo right away. Who knew that it was possible to be this excited about having more than half of one's liver taken out?!?!?!?

I'm supposed to call tomorrow to schedule the surgery. (We have to wait at least a month because one of my treatment drugs-Avastin slows wound healing. It has to be out of my system.) I also need to make an appointment with Dr C, my original surgeon, about the spot in my colon. AND I have to call and cancel my next two chemotherapy sessions!!

What A Way To Start The Day?!?!

2006-06-07T10:25:00.000-07:00

I've been dreaming a lot recently, but for the most part I haven't been able to remember many details. I just wake up very disturbed, but not knowing quite why until yesterday. I had a dream that Dr W had sent a note to Dr B (the liver surgeon) explaining why he thought that a liver resection would be a good idea. He talked about my excellent response to chemo and my age. All prefectly normal stuff. Then he warned Dr W that I was "unseemly" and "rather unattractive." Huh??? According to Webster's dictionary "unseemly" is described as not in accord with accepted standards of good taste; grossly improper. "Rather unattractive" speaks for itself. So I woke up wondering why on earth I would think that someone else would describe me that way. Then I read my horoscope in the LA Times (by Holiday Mathis):

"You may be uncertain as to how others perceive you, but the planets assure that you're coming across well. As sung by sign mate Prince, you don't have to be "cool" to rule someone's world."

Now I'm unseemly, rather unattractive and not cool! I guess the people around me like me that way though? Now I just have to decide what to do with my power to rule someone's world. Hmmmm... the possibilities are endless.

The Never-Ending, Continually-Frustrating Financial Saga

2006-06-06T18:00:00.000-07:00

Last week after my treatment, I stopped by Walgreens to drop off a prescription. At the same time, I decided to verify that my prescription for Kytril, my anti-nausea medication, was ready. I had tried to pick it up a day earlier, but it was not there. They were expecting to receive a shipment in the next day. The woman confirmed that it had come in and was ready for me. Instead of waiting in another line to pick it up, I said that I'd come back later to pick up both the new prescription and the Kytril.

Around 6pm, I headed back. They weren't busy and I was able to get help right away. Both filled prescription were presented to me and I was told that since I had not met my "share of costs" (a monthly deductable) for the month, I would have to pay for both drugs. I instantly started to panic and try to explain that I had met the amount (which is an insane $511) almost two weeks earlier. She very patiently checked in the computer and confirmed that Medi-cal was claiming that I still needed to pay an additional $44. Well, one prescription was $22 and the Kyril was... $367. Keep in mind that is $367 for six pills. SIX!!! Because the computer said that I still owed money, I would have to pay the total amount because Walgreens can't split the cost between me and Medi-cal.

The Medi-cal offices were closed for the day, so I wouldn't be able to contact them until the next morning and I needed to take the first pill at 10pm. I also did not have access to enough money to pay for the prescription. The Walgreen's employee gave me a couple of suggestions. I pay for one box ($123) - still too much money since rent was due in two days and I had already shelled out $511 for the month. I could try contacting my clinic and see if they could provide me with samples to get me through until I could get this straightened out.

So I paid for the $22 prescription and headed home to call. Miraculously, the nurse who had administered my chemo that day answered the phone. I explained the whole situation to her and she said that they had samples, but they were supposed to have the doctor's authorization to give them out. She asked me to hold and must have talked to someone else. When she came back on the line, she said they could give me 4 pills and they'd get Dr W to approve it the next day.

By then it was almost 7pm and the clinic closes at 8pm. I had to leave right away. Traffic was really light so I was able to get there in 30 minutes and pick up the medication that I needed to my immense relief. They had also already contacted Dr W who had given his okay.

I was not able to make the necessary phone calls the next day to get it all straighted out due to my chemo-induced stupor and now it's June and I get to start all over again. There's a financial counselor at the clinic that I need to call this week to see if she can help me. Someone even suggested that she may be able to get my "share of costs" to a reasonable amount instead of the current completely ridiculous amount since she actual knows how Medi-cal works.

Consultations, More Doctors and Possible Surgery, Oh My!

2006-06-04T23:04:00.000-07:00

Last Monday I had met with Dr W to discuss my latest CT scan results (and then get injected with another chemo treatment). He went over the report with me which it turns out, I had deciphered rather well. There are three tumors in my liver, one swollen lymph node next to my IVC (look it up), and one spot at the surgery site where the two ends of my colon were reconnected. I brought up the possibility of a liver resection and Dr W thinks that it is worthwhile at this point for me to have a consultation with a liver surgeon. He gave me a referral to a well-known liver surgeon, Dr B. I will be calling tomorrow to see when I can get an appointment with him. I also have to get preapproval from Medi-cal for the consult. If the resection is doable, I need to see Dr C (my original surgeon) about the spot at the old surgery site. I may need to have a second colon resection done to get rid of it. Hopefully, they could do them both at the same time and save me from having two MAJOR surgeries. We'll see.

I also had a difficult time getting my anti-nausea meds for my post-chemo regime this time. I'll go into the detail later because it's late and I'm exhausted after an amazing horseback riding adventure which I'll also detail later.

I've been thinking that what would really make me feel better and make this situation easier to bear would be a trip to France. I could tour wine country for a couple of weeks which means I'd have to bring my roommate R since he's working to become a certified sommelier. Oh, and if R is coming, I should probably bring J as well. Now I just have to find someone to sponsor the trip... hmmmmmm.

Candy Mountain

2006-06-03T13:52:00.000-07:00

I'm trying something new - I promise I'll have a real post at some point today too, but I have to share this video that I found through My Pink Shoe. I hope that you all enjoy it as much as I did! (Be prepared - it's about 3 1/2 minutes.)

Site Updates

2006-05-29T19:53:00.000-07:00

As you can see, I've made some updates to this site. You can now be updated by email each time I post. Just enter your email address in the space provided and follow the instructions. Or if you prefer to use a RSS feed, I have that set up as well. I have also added a donation link. This was on my original blog site and I finally figured out how to move it. Donations are appreciated, but absolutely not required nor even expected.

There are future changes to come. I plan on updating the links provided, adding several cancer and some colon cancer-specific sites as well as a couple of blogs written by other cancer survivors. I do not plan on deleting any of the current links, but there will be some regrouping. All of this is to make the site more informative as well as making it easier to keep up with the posts.

I do have chemo this week so posts will be infrequent. I will try to post tomorrow afternoon with an update after I talk to Dr W about my CT scan results, but otherwise I'll probably be out of commission until Friday (which is my birthday!!!).