Wednesday, October 27, 2010

Not the greatest news of all time

Unfortunately. Not all bad, but not all good.

My liver is clear. Yay liver!!

However, there are a couple spots on my lungs. You can bet your ass I started bawling when the PA read that from the CT scan report.

BUT. The way colorectal cancer tends to spread is to the liver first, then the lungs. The doc is hopeful that the spots will turn out to be scar tissue.

The spots are too small for biopsy, so the best we can do is get another CT scan in three months so the doc can take another look. He's also going to look at the images from my Sept 09 PET scan. For some crazy reason, there's no CT scan of my chest from last September. There were chest xrays and the PET, but no CT. So the CT scan we did most recently will be the base line scan.

I spent a good chunk of the day feeling...defeated. Scared. Angry. Sad. Helpless.

Then a helpful and awesome friend pointed out to me that there are lots of things I can do between now and January. I can continue the yoga I do and meditate on being healthy. I can boost my immune system. I can keep working on getting strong through exercise. I can love my family and friends. I can live my life.

She is absolutely right.

Am I still feeling sad and overwhelmed and crappy about all this? Of course. Fuck you, Rectal Cancer and your after affects. You big jerk, you.

But I have a plan and some direction. I have a ton of support and prayers and positive thoughts. I have awesome family and friends.

So yeah. That's the deal right now.

Monday, October 25, 2010

I love Lisa Loeb, but the waiting? Not so much.

Waiting for Wednesday

Waiting for Wednesday, my stomach doesn't hurt enough
pain always is a sign.
Waiting for Wednesday, no proof of mine exists
so I don't have to take it back.

Don't want to show you goodbye
show you goodbye
show you goodbye
show you goodbye

but you're waiting for Wednesday
waiting for Wednesday
waiting for Wednesday, I pray you'll put me on the spot
I do believe you, that you'll love me that you'll leave me

What will I do when you come near to me?
You'll put me on the spot.
You've been doing this a long long time
not that you're better than me,
but that you do it a lot.

Now I'm waiting for Wednesday
Waiting for Wednesday
Waiting for Wednesday
Waiting for Wednesday

I'm gonna show you goodbye
show you goodbye
show you goodbye
show you goodbye

Now I'm waiting for Wednesday,
you're back from out of town
the west looks dry, your mind is clear,
and I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here
to show you goodbye.

and I'm waiting for Wednesday to show you goodbye.

I don't know that the song really describes my situation. I just like it. And I thought it ironic that I, too, am waiting for Wednesday.

Thursday, October 21, 2010

The Waiting

It's not as bad as I thought it would be.

I mean, I can tell that I'm more preoccupied than usual. I can tell that I'm more stressed than I have been in a few months. I can tell that I'm not as patient with my family. I can tell that feelings I've been having all along have resurfaced.

However. I've also decided that whatever the scan says, it's not an emergency. Would it be nice to have my results RIGHT NOW THIS SECOND? Of course. Honestly though, what's a week? If my scan is clear, then it's clear (yay!) and if it's not, nothing is going to change much between now and next Wednesday. And we'll deal with whatever we have to next week.

I didn't blog about the CT scan, did I? How about if I do that now? I know you're on pins and needles.

First of all, I drank about a gallon of barium. What? Okay, not a gallon. But I did drink a container Sunday night, then another container Monday morning. And another big glass shortly before my scan. Overkill? I only drank one glass an hour before my scan last year. I picked vanilla flavor. Vanilla smoothie. It sounded slightly better than some of the other choices, which included mixed berry and orange.

The waiting room consisted of people who were easily twenty years older than me. As per usual. You'd think I would be used to this, but it's still so weird.

The nurse had a freakishly hard time finding a vein for the IV and she might have poked my arm twice (I don't know, I was looking away and thinking happy thoughts). I'm not bruising as badly as I was when on chemo, thank goodness for that.

The scan itself was relatively fast and easy. The IV barium they give you makes your whole body feel hot. Kind of like a hot flash. Because that's what I need, MORE hot flashes. Your body passed through a giant donut and you have to hold your breath when the nice voice on the scanner tells you to.

I almost started crying during the scan. Okay, a few tears might have leaked out. There's nothing like having a scan that makes you think really awful thoughts about your life and everything that's been going on over the past year.

Then it was over.

Anyway, I wanted to share some of this for anyone who might be reading and dealing with a bunch of cancer crap. I'm sure my feelings and thoughts are not wholly unique in this situation, and I think it's okay to feel whatever you feel. Sometimes I think about the past year in amazement. I mean, at this time last October, 8am, I was getting ready to go in for radiation. It doesn't seem like any of that was real, it's so weird. It's like I was dropped in some alternate universe for a year, and then dropped back into real life. Did I really do all that?

Feel what you need to feel. Hug people around you that you care about. You know, the same stuff I always tell you to do.

Sunday, October 17, 2010

CT Scan tomorrow

That's right, I have one.


It will be my first one since the initial CT scan in September 2009. It will be my first scan since finishing treatment.

I'm a little freaked out.

What if...

You know how those get away with you. I don't like the "what ifs." You can't plan for those. You can't prepare for those. You just have to let it ride until you get the information you need to move on. I wish I was better at letting it ride.

You know what I am pretty good at? Faking it until I make it. So that's what I've been doing, being outwardly positive for myself, for my family. Inside I'm mostly positive. I'd say I'm 75% positive. And 25% negative.

Scanxiety. I has it.

Happy thoughts welcome and very much appreciated.

Wednesday, October 13, 2010

Interesting Information

At least I found it interesting. I think you all know that one of the hardest things, if not THE hardest thing, about my diagnosis was weaning my son before chemo and radiation started. From the beginning I've been of the opinion that if, after this shit was all over, Eli asked to nurse, I would let him. And if he started back up again, that was fine with me.

He hasn't asked, for the record. He does, however, fondly pat my breasts and say they are His Uns. I asked him once if he missed nursing and he said he did.

I will admit to being concerned about the safety of nursing after undergoing such harsh treatments. Obviously it's not safe to nurse during cancer treatments. But what about afterwards? How long after cancer treatments would one have to wait before nursing?

Well, guess what I have in my hot little hands?? The answers! There is a very cool doctor by the name of Dr. Hale who does great work concerning medications and breastfeeding. He opened a center called InfantRisk Center that is dedicated to providing up-to-date, evidence based, information about medications and breastfeeding. There are people available daily to take calls. How great is that?? Here's a link if you'd like to know more: InfantRisk Center

Some people might say this is not important information. Some people might say that extended breastfeeding doesn't matter that much. Some people didn't understand why it was so heartbreaking to me to wean a 3 year old. That it's a waste of time to encourage a weaned child to go back to the breast. I happen to disagree, and I know I'm not alone. With more and more young women diagnosed with colorectal cancer every year, I think this IS important information.

So here's the deal. I was treated with 5FU, Leucovorin, oxaliplatin, and irinotecan (I alternated FOLFOX and FOLFURI for my 8 treatments after surgery...I know not every oncologist does it that way). An important part of safety of drugs and breastfeeding is how long the drug stays in one's system.
5FU is gone in 24 hours.
Leucovorin is gone in 2 days.
Oxaliplatin binds to red blood cells. It takes about 3 months for the body to replace all red blood cells.
Irinotecan is gone in 28 hours.

Radiation was another concern. From what I could gather, the radiation I received was high energy x-rays. According to InfantRisk, this type of x-ray is just in and out of the body and has no effect on breastfeeding. There are, however, other kinds of radiation, so for your particular situation it would be wise to give InfantRisk a call if you need more information.

So, with that information, I would feel safe nursing at this point.

I don't know what will happen. I don't know that Eli would start nursing again. I do know that this information has made me feel so damn peaceful. It's like knowing I CAN nurse if we choose brings everything around full circle. The hard things I went through somehow seem more worth it. I don't know, it's hard to explain.

And maybe this information will help someone else.

No judgment, I think we all do the best we can with what we know. I wanted to share because I'm so freaking happy about learning this stuff. :)

Wednesday, October 6, 2010

All right. I found a wound/ostomy nurse who knows what she is doing. She has seen wounds like mine before. She was able to rattle off the name of a recommended colorectal surgeon (if we get to the point that I want to surgically correct the wound). Yay!

So the nurse said things look good. She suggested using a gauze called iodoform packing strips and wants me to try them for a month. Not a problem, we'll do that.

She was also very interested in my ostomy. I don't know if I gave satisfactory answers to her many questions...I don't pay a whole lot of attention to what product I'm using. I'm fortunate to have a husband who is the product expert. And I feel that the product I have is working pretty well for me. It's nice to know that there is someone knowledgeable who can help if I do have questions.

I feel a lot better about things. Dealing with this wound has been stressful. I can't imagine doing it without Eric's help.

Anyway, we'll just keep plugging along. I know that healing this thing will take time. Darn radiation. It was good for shrinking my tumor, not so good for anything else.

Sunday, October 3, 2010

The gauze is out!

The missing one, that is. Yeah, freaking FINALLY. And only because Eric is The Awesome.

I pretty much hate my ass wound. I'm tired of dealing with it. Blech.

Our next course of action will be to call a wound/ostomy nurse. And coincidentally, we got one of those packets of advertising that included an ad for a wound/ostomy nurse! How crazy is that? It's a sign that we should call her.

All right, I don't know if it's a sign. But I'll call tomorrow and see when I can get in. My master plan is to see what she thinks about the wound itself, explain how we've been caring for it, and then ask her about some of the ideas that you kind readers have suggested.

If the wound heals as the surgeon suggested it would, I think I still have a bit of time. Perhaps I just need to be patient? I don't know.

I do know I miss the "good old days" when I didn't worry about my body. I get weary worrying about getting enough protein for good healing. I get weary bugging Eric to change my dressing all the time (even though I know he totally doesn't mind, he kicks so much ass). I just am, as I mentioned in my last entry, tired of all this. I feel like my body is a stranger, that it's not mine anymore. It's very hard.

How do you get your body back after something like this? I think I can now empathize with new mothers who complain that they want their body back. It's a crummy feeling. I don't like it.

Deep down I know I will muddle through all this and come out okay. I've gone through a lot of bad times and feelings and come out okay.