Sunday, February 27, 2011

Chemo Nesting

Nesting, you know, getting all ready for something big to happen?  Usually it's a baby.  I'm busily nesting for chemo.  Today I attacked the kids' room, convinced them to donate a basketful of toys, and got it all cleaned and organized.  I have three tank tops cut out for Reese, and will probably cut out a couple more before sewing them together.  She'll need a couple pairs of shorts too.  The fridge needs cleaning out, the pantry needs organizing.  I want to make a list of fast meals, easy meals, and freezer meals.  The bathrooms both could use some attention.  Library books are due at the library.  A homeschool plan might be a good thing.  Oh, and I could use some of those suckers and the ginger candy that I used last time I had chemo (that I found at a local vegetarian store!!).

Oh, did I mention the water will be off at our apartment complex Tuesday?

In the middle of all the scurrying, sometimes I stop and think.  I hope.  I wish.  I hug my husband and children.  I remember that it's important to live today and try not to worry too much about the future.  I appreciate the thoughts and prayers of friends and family, and even strangers.  I cry.

I do feel better though.  The prozac?  Maybe.  Probably.  But I also feel a determination to kick some ass.  I'm good at chemo, I know I can do this.

Fake it til you make it, right?

I'll be busy for the next few days, and Wednesday is Port Placement day.  Wish me luck!!

Thursday, February 24, 2011

Alien Port, you are not welcome back

March 2nd the alien port comes back.  :(

Isn't it ironic that I'll be starting chemo in March, which is Colorectal Cancer Awareness Month?  I'm thinking about wearing blue on my chemo days in March.  Anybody with me? 

I feel like I'm nesting.  There are soooooo many things I feel like I need to get done before March 8th.  I wish I was nesting for a happy reason.

I feel like such a downer.  I am really trying to find the positives in this situation, but damn, it's difficult. 

Wednesday, February 23, 2011

My Endless Afternoon at the Doctor

The WAITING.  Ugh.

And what's the deal with the waiting room having no good magazines?  They're all freaking cancer magazines.  Just what I want to read about when I'm in a cancer waiting room.  Gah.

All right.  So I saw the CO today, and he mostly just wanted to make sure I was comfortable with the chemo plan that the Atlanta Oncologist proposed, which, it turns out, was the same thing the CO would have done.  CO mentioned FOLFURI and Avastin, then mentioned Erbitux, flipped through my file, mumbled some stuff about the type of cancer cells I have, and we started talking about port surgery.  We decided that I'd have the port put in next week, and start chemo the week after.  I couldn't think of any other questions, so he left and sent in the nurse.

The nurse is very nice, but...not super helpful.  She gave me a card that said I should report to the office at 8am March 8-10th.  I was shocked, because all three days???  I asked, and she was sure I was to be there that much.  Then when I questioned what exactly happens on those days, she mentioned that I'd be doing FOLFURI and Erbitux.  And I was all WHAT???  What happened to the Avastin?  What's the difference between Avastin and Erbitux?????  The nurse had no idea.  She offered to get the doctor.

The CO came back in, explained the differences between the two drugs, explained why he wanted to start with Erbitux, and assured me that I would only need to come in for one day.

The nurse came back in, we set up my first chemo day to be March 8th.

Then I was turned over to the schedulers where I found out that the people who deal with scheduling port placement left at 3:30pm.  Sigh.  Sigh.  So they will call me tomorrow.  I also found out that I have an appointment with the doctor before I do chemo.  Okay, fine.  That was standard in WI, not a problem.  However, the CO doesn't start until 9am, and because my chemo is so freaking long, they wouldn't schedule me to see him before.  So I now also have an appointment to see the CO the day before chemo.

After all that mess, I had to go to the lab for bloodwork because the nurse noticed that it's been a month since the last time they took blood.  Sigh.  Sigh.  By th e time I finished, it was 5pm.

This whole thing is freaking stressing me out.  But I'm not going to worry about it (too much) tonight because it is Survivor Wednesday.

Sigh. Sigh.

I wish there was some way to just dump my brains out, sift through the junk, and get it all back in zen mode.  My thoughts are going in so many different directions with no signs of stopping.

We're going to see my local oncologist today, who will be referred to as CO (colombus oncologist).  Hopefully after that we'll have some kind of timeline to get this shit moving.  As much as I don't want to do chemo again, I'm growing weary of limboland.

I keep thinking about all the things I need to do before chemo.  Trying to remember what worked last time in the way of caring for the kids, what meals were easiest, what breakfasts they could get for themselves.  Thinking about what I want to take with me to treatment, wondering if I'll have internet access.  Hoping that I'll be able to sew because Reese still needs some summer clothes.  Wishing that Eric didn't have to go through this again.

See what I mean?  I'm trying to deal with the here and now because there are things that need to be done today, but also trying to plan for the days ahead. 

I can't help but wonder why sometimes.  Why me, why my family?  What am I supposed to be doing with this experience?  I'm not sure I'll get answers to those questions.  Frustrating.

Time to start the day.  There are chores to be done, children to school, and it's a sunny day here in GA.  :)  It's hard to be too sad about anything with so much sunshine!

Monday, February 21, 2011

Visit To Atlanta

The good news:  I lost another three pounds!!

The bad news...more chemo.  Sigh.  Sigh.  Sad face.

Atlanta Oncologist suggested more chemo, not alternating, and asked me some questions about my experiences with FOLFOX and FOLFURI.  Irinotecan was easier for me to deal with in the past, so we're going to go with that plus Avastin.  We'll try it for a few months, do another CT scan, and see how things look.  If the lesions are getting smaller, we'll do chemo for another few months, do another CT scan, and if they're continuing to shrink, I can maybe go on maintanence chemo.

So.  The port goes back in.  The chemo starts again.  I knew that's probably what Atlanta Oncologist would say, and I still cried.  It makes me sad that my only option right now is more fucking chemo.  Ugh.  Even though I think this time it might be different, I'm not right out of surgery, I'm probably more physically fit than I was last year.  Still.  I never did like chemo even though I was pretty good at it.

The other piece of good news is that we're going to do our treatment here in Columbus.  The Atlanta Oncologist will work with the Columbus Oncologist, and unless something crazy happens, I can get pumped up with poisonous chemicals in Columbus.  After the drive today, I'm glad we can stay closer to home for now. 

The only other notable piece of news is that my prozac dosage was increased.  I'm just not dealing with things well right now.  Hopefully it will help me get back on track.

I'll be seeing Columbus Oncologist this week and I should have more information, maybe even a timeline, after that.  Thank you for the continued thoughts and prayers!!

Friday, February 18, 2011

I have a love/hate relationship with my responsibilities these days.  I hate them because Holy Crap, all I want to do is burrow in my bed, read Harry Potter books, and pretend that the world outside (and all its problems) doesn't exist.  I love them because they get me out of bed in the morning and get me productive and not thinking so much all day long.  So luckily, the responsibilities aren't going anywhere because I think we all know that staying in bed isn't going to make anything go away.  At some point, I have to deal with what scares me, what makes me cry, what makes me angry.

It's a beautiful day outside, so I'll be dragging the kids out to enjoy it.  Despite missing friends and family so much, I'm thankful for the sunshine and the warmth that is Georgia today. 

I'll be trying not to think about Monday when Eric and I will drive to Atlanta and get a second opinion about what to do next.

Tuesday, February 15, 2011

Choosing to have a peaceful, calm spirit

That's what I meditated on today when I did my yoga, but choosing to be calm and peaceful is harder than you'd think.  I don't feel stressed out but I know I am...does that even make sense?  I think it's the prozac.  Running helps a little, yoga helps a little, staying busy helps a little, hugging my kids and husband helps a little.  Maybe all the little bits will add up to calm and peaceful.

We did get an appointment at Emory, and thankfully we don't have to wait too long to see the doctor.  The appointment is on the 21st.  I was really surprised to get in so soon.  It's nice to have that piece done.

This is my 300th post.  I wish I didn't have this blog, I wish I didn't have to post a 300th post, but I hope it's helpful for someone.  As always, if you are reading and feel this would be a help to anyone, please pass it along.  I remember feeling so alone when I was diagnosed.  Even on the internets, there wasn't much out there for a 32 year old with rectal cancer.  I know there are several blogs now, which is both good and bad.  Telling our stories is important, and that's one of the reasons I keep blogging here.  That, and the fact that fucking cancer won't leave. 

Thank you for thinking of my family, of my kids, and for the thoughts and prayers for me. 

Thursday, February 10, 2011

Ugh, complicated

Why is it so complicated to SEND RECORDS??  Eric has been communicating with Emory, and they are still waiting for parts of my medical records.  I completely don't understand why they don't have the whole shebang, because I'm positive that's what my Columbus doc has.  My file is like two inches thick there.  How could the colonoscopy report or the chemo notes be missing?  Ugh.

Anyway, the ball is rolling, and records have been requested.  I actually spent about an hour (maybe more?) tonight going through my stack of stuff, marking things with post-it notes, in case we need to just send things ourselves. 

It was weird reading through the doctors' notes and surgery notes and stuff.  There were things that I'd forgotten, things that I remembered a little differently, and I don't know.  Weird.  It's like reading a book about yourself.  All my doctors said that I'm a pleasant patient.  Awwwww.

I'm impatient.  I want to get the treatment done and move on with my life.  The waiting is the worst, knowing that while we're waiting, stupid cancer is growing.  I hate that.

Tuesday, February 8, 2011


There are so many different kinds of tears.  I have cried happy tears and sad tears and frustrated tears and angry tears in my life.  Last night my tears were angry.  Angry because of the unfairness of everything.  Angry at the injustice of the world.

I realize that life isn't fair.  Lots of times bad things happen for seemingly no reason.  I feel that I have quite a handle on what fairness means, and that fair for one person doesn't equal fair for another.  I get it.  At least I think I do.

I also get that it's okay to mourn change, that it's okay to feel sad that some things in my life are never ever going to be the way they were.  Some of those changes don't bother me.  Some of those changes are frustrating and irritating and lead me to angry tears.

I don't want to get stuck in the longing to have things returned to the way they were.  I really don't.  I'm working hard to continue to change the things I can and to accept the things I can't change.  But I think once in a while, it's okay to just cry and mourn and be angry.

Stupid cancer.  I miss the days before it was on my radar.  I miss the days before it affected my family.  I miss the days before it made me cry.  Stupid stupid cancer.

Friday, February 4, 2011

Something to Think About

More and more, as we now know that we'll be working to kick cancer in the ass (lungs?  heh) again, people have asked what they can do?  What do we need?  How can they help?  I think I speak for both Eric and myself when I say that for the last few weeks, we've been in shock, and we've just assured everyone that we're fine right now.  And we really ARE.  However, I can tell that many people are anxious to help in some way, and want to do SOMETHING.  That's what is so great about our family and friends, they are such action oriented people.

Eric and I talked for a long time last night about all this.  We were unsure about posting about this lest it be seen as a greedy grab for stuff.  The last thing we want is stuff.  If I could have three wishes, they wouldn't involve stuff at all.  However, we know there are people who want to help, and are feeling helpless because of physical distance or because they just don't know what to do.

First and foremost, all we really ask for or desire is your continued thoughts, prayers, positive energy, kind words, encouragement, and support.  When someone shares with me that I am on a prayer chain or that they have been thinking about me, it just means so much.  I really believe that positive support is important.

Secondly, cancer affects us all.  If you don't have it, you know someone who does.  It sucks no matter who has it or what the circumstances.  If you feel led to do something with your pocketbook, we'd like to suggest some ideas.  Please consider a donation to the American Cancer Society.  Better yet, find out where the cancer centers are in your community and find out their financial needs.  I don't know if everyone knows this, but I started running a handful of months ago.  If you're so inclined, find a charity 5K walk or run in your area and enter, or volunteer to help out.  Every little bit helps, it really does.

Thirdly, our family.  I think this part is the hardest.  We've decided to go to Atlanta for a second opinion, so it's forseeable that we'll have some driving in our future.  When I'm on chemo, it's so difficult for me to care for my family, to cook for them especially.  When the kids spend time in the car, or time with a sick mom at home, there are things that could make it easier for them.  Again, we are NOT EXPECTING ANYTHING except prayers, thoughts, and continued support.  Really.  However, if you feel led to help our little family in some way, here are some things we thought of that would make a difference to us:
**gas cards
**restaurant or grocery gift cards
** or barnes and noble gift cards so we can purchase books on CD or educational DVDs for the kids

I can't stress enough that your prayers, positive thoughts, and support are the most important thing you could ever do.  Absolutely the most important.

Thursday, February 3, 2011

Good news and Bad news

The good news is...I lost six pounds!!!  whoooohhooooooo!!!!!

The bad news...there's cancer in my lungs. 

I don't know, it sounded funny in my head.  And if you can't laugh, well, I've really had enough crying (though it doesn't take much these days to get me started).

Anyway, Eric and I went to see my doctor today to review the PET scan and talk about what to do.  The PET lit up the spots in my lungs, so sadly, they are not some rogue fungus or anything other than cancer.  We discussed a biopsy, which the doctor feels is unnecessary.  He is 90% sure we are dealing with mets from the rectal cancer.  Surgery at this point isn't an option.  I can, however, have any kind of chemo I want!  Well, fuck yeah!!!!

Um.  Not really.  The reason I'm okay for whatever chemo is because I have some wild cancer cells and not mutated cells.  Apparently there was a test of my rectal tissue after surgery, so although I didn't get to see my hacked out rectum, it was tested.  Wild cancer cells are better than mutated ones as they tend to respond better to chemo.

Up until now I have been just a little unsure of the doctor.  He did something really cool though, he told us we always have the option to get a second opinion, and he knows of a very good hospital (Emory) in Atlanta, he knows a doctor there who specializes in colorectal issues.  He even checked to see if there were any clinical trials I could get in on.  And he gave me an awkward hug before I left.  Awwwwww.

Eric and I decided before we saw the doc that we'd be seeking a second opinion, but we've really always talked about going that route if this whole cancer thing got more serious.  Our doctor here said that if the doctor at Emory suggested a treatment that could be done at Regional here in Columbus, that the doctors and hospitals could certainly work together.

Do I feel better?  Meh.  I mostly just feel sad that I have cancer in the first place.  It sucks.  But you play the hand you're dealt, I guess.  I'm sure there are more technical things about this...perhaps I'll ask Eric to post something on caring bridge for you technical types.  Or you know, feel free to ask questions.