Here we go again

Last night, after I had put all the Halloween costumes in school bags and had everything organized for today (things for class parties, trick-or-treating, etc.) I went for a run. It took only a few minutes of quiet, away from the bustle of Halloween prep, puppy watching, driving kids, and worrying about my mother-in-law who was at our house recovering from her first round of chemo when I realized - "Holy *&^%, I'm about to have my chest sliced open again." It wasn't a pleasant realization.

There is something about having done this particular surgery before, and the fact that there is no actual cancer to get out, that is making me really upset about what is to come. I'm not happy about the drains, and the pain, and the constipation from surgery, and being so out of it for all of those days (I can't even remember the days after my mastectomy...I guess I should read about it here in my blog).

I'm also becoming violently angry at my breast surgeon, for telling me I should have seen a radiation oncologist now, 7.5 months later, when she SO CLEARLY told me I would not need to see one. I'm pissed off that I am scheduled for surgery, checked in, have spoken with registration and the anesthesia department, and on Monday I could get a recommendation that means I should not even have this surgery (which I don't even want).

So I am afraid, and I'm tired of surgeries, and maybe I shouldn't even have this one, what if I need radiation? BUT, I am SO TIRED of my f-ing breast form. I am tired of these mastectomy bras. I am tired of all of this stuff, and I just want to get through it as soon as I can. I'm never going to want or actually need to do this surgery, so I might as well get it done while I already look like shit and cancer is affecting my whole life. Also, even if I need to do radiation, which I won't know for a while, I refuse to not try for the implants again. There is risk of failure of the implant if I am radiated on that side, but I'd rather take that risk than decide right away for a tram- or lat-flap breast. If I am freaking out about a 5 cm incision on my right side, how much worse would a tram flap or a lat flap breast be! Horrible.

I know there are so many more important things to think about - how lucky I am that I am alive! How lucky I am that my prognosis is good! How fun everything can be! But for once I just can't get up for those things. For once I am feeling terribly unlucky, because so many other people don't have to deal with all this crap. I know I used to be a parent who was thinking about trick-or-treating and whatever else, the daily annoyances of stay-at-home motherhood, but now every other thing takes a backburner to me getting my family through yet another sucky thing with minimal impact on them. And I know I shouldn't be, but I'm just a little bit bitter and on edge.

Overwhelmed by cancer world

Today I revisited my breast surgeon. I like the term "revisited" because no one told me to go to her, or when I should follow-up. I do wish I had either been given or asked for more direction from that office...I only went because I felt like I should learn how to check myself, and ask a few questions before I start getting my right side put back together in 9 days.

And oh my goodness, am I so worn out right now. The MD told me I should have seen a radiation oncologist. What? Don't you remember telling me I wouldn't need to see one? Don't I remember my oncologist telling me I didn't need to see one, either...something small like a bilateral mastectomy and 6 rounds of TAC...meaning radiation would be of no real benefit? So now, 9 days before I am about to get an expander put in, I may need to see a radiation oncologist, who might say I need radiation, which means I would maybe never get to be put together that way after all?

So then I went to S's chemo, which was like a bright spot, because she was beautiful, and composed, and fun-loving, and wonderful. She made friends and took everything in stride. It was fun to spend the time with her...though there was a glitch. My husband by that time was FREAKING OUT about this need to see a radiation oncologist and insisted I go stalk my oncologist and ask him what he thought.

I was so not into doing that. I like to have appointments, and feel like I earned and deserve my face time with a physician, not like I am stealing him away from other people who need him. But Bill was probably not going to let me back into the house if I didn't stalk him, he was so upset. So I stalked, and my MD is so great he put me in a room and told me what he thought. So that was sort of like appointment #2 for me today (totally unplanned).

Then I went back out to sit for a while with Sybil, and I went out to appointment #3 - a follow-up with my gynecological oncologist. Also a lovely person, he spent lots of time with me, and we discussed the radiation oncology stuff, he gave me names, etc.

I was all fine and dandy in the middle of all of these appointments, but now that I am home I'm tired of cancer.

Katie said...

From upstairs, Katie is asking me these questions (I'm busy getting kids ready for school so don't know what she is talking about):
"Mom, do you care about clean water? And do you care about health? And do you care about nature? And do you care about reading?"
And I said, "Yes, why are you asking?"
So then she said, "Well, then can you please put some money in here?" (Her Trick-or-Treat for Unicef box)

So if anyone else wants to put money in here, or join our team for easier trick-or-treating for Unicef, please do!

Decisions

I've decided to keep writing this blog, but with more of an emphasis on privacy (with regard to other people). Also, I'd like to warn people to read at their own risk (or stop reading entirely)! I'm not a perfect person, not a particularly unique person, and sometimes a downright idiot. I'm going to continue to do stupid things throughout my entire life, hopefully learning all along and making better choices after my mistakes. If I wasn't such a fireball of emotion and energy, and if I was less impetuous I am sure I would lead a much easier life, but alas, I'm not, so I will just have to do my best to make up for my terrible character flaws in other ways. I'm sure I must have a few good qualities and will just have to figure those out and use them to make up for my asinine qualities.

Also, the fact of the matter is that my life is changing back to what it was before, slowly. Eventually what I put here is not going to make people worry or sad, or even interesting. It's going to be boring, and so I'll lose readers for just that reason. Yes, I have some surgeries and endless doctor appointments, but those have become pretty routine for me by now. Yes, I am going to live with cancer for the rest of my life (hopefully not with a recurrence, but I doubt the fear of that will ever go away). I've gotten to the place where generally I am ok with that.

Cancer is not as scary a word anymore for me....and this is cliche, but I am more concerned with finding joy and living well than worrying about my cancer coming back. It seems to me like you are given at least once choice when you have cancer - and that is whether you are going to let it take your life away, or whether you are going to let it change your life for the better. I'm going for the latter option. Even if it kills me someday, I want to know that I did everything I could to make my family and myself happy and brave in the process (and if I can help one other person besides my little family in this, it is also worth it to keep this blog going).

So I said a really stupid thing 3 years ago, but that was a girl who was a relatively new and overworked mom of 3 small children, and certainly not a person who was actively trying to find the good in the world instead of dealing in mostly minutia. I was just trying to get by, to love my children, until I could go do something to better myself. Now I realize I am supposed to find ways to better myself now, to find that joy now, to take what has been given to me and to capitalize on it. No, I don't yet have that career I have always wanted to have, but there are opportunities everyday to do something meaningful if you look for them.

I try to let comments just slip past me without getting too worked up about them now...or I just find them amusing. I remember when so many things seemed worth my emotional concern and effort, but now I basically feel like I have only one main emotional concern and effort, and that is doing everything I can to stay alive and love my family and see them all grow up and have happy lives. If someone says something that might have annoyed me in the past, it probably would amuse me now and even make me love them more for being so cute and wrapped up in smaller issues. I would even be glad for them that they didn't have to save up all of their energy and emotion and luck for one big thing like me - that my cancer won't come back.

So if you are still with me after this long diatribe, know that I'm nothing special, often rotten like a tomato in my garden that got frozen and rotted before it's time. Somehow I just got lucky to find a husband who loves me despite my many terrible faults, and kids who are the same. Tonight E wanted to email my poor maligned friend to tell her how sorry her mom was (because I tried to use my mistake as an example of a horrible thing a person can do, and how wrong that was)!

OK, bedtime. Let's hope I don't waste another day mostly in misery, as I have two doctor's appointments for myself, with S's chemo sandwiched between them. I'm going to be at the Rose Cancer Center off and on for about 6 hours tomorrow!

Hating myself

When I started this blog, I started it with a few ideas:

1. Writing helps me to think through bigger issues which I otherwise might just bury and leave until they rot. I needed to get down to business and process a lot of thoughts, so I started writing.
   
2. I couldn't stand calling people and explaining all of the stuff that was happening to me - I hate the phone, and even more, I hate going through my feelings (thus the writing to get over them). I couldn't take talking about my feelings OVER and OVER again, as I would have to in order to inform interested parties in our situation.
3. I like writing on the computer because I can edit my thoughts while putting them down, quickly. I like clicking on "publish post" because it makes me feel like I dealt with my thoughts, and there they go!
4. I couldn't imagine that there would be anything wrong with sharing all of my information, because I have diarrhea of the mouth in person or on the phone (which is why I hate talking on the phone and am nervous about conversations in person, also). I couldn't imagine sharing something I wouldn't share in person, and I might even represent myself better if I was writing and editing before I click "publish post".
5. After a while, people told me that the blog helped, so I didn't mind other people reading it.

Well, I made a big mistake. There was a time when I had a private blog (private because no one knew about it, but this was about 3 years ago and I wasn't smart enough to make it entirely private, and then I forgot about it), and I wrote something which I didn't mean to me unkind...but it so comes off that way. And, as these things go, a dear, kind, wonderful friend found what I had written in this online "journal". I feel like publicly flogging myself.

I am stupid, but was probably more stupid then. By 2008 I have read enough blogs to know that people say stupid things and then they get hated for them. I couldn't imagine that I would be one of those people, not because I thought I was better, but because I thought I was invisible and unimportant and my thoughts wouldn't be found...but also because I thought I didn't ever write anything mean. Well, I thought wrong.

So anyway, I am trying to figure out what to do with my blog...and I'm not asking for advice. I'm especially not looking for consolation. About the only thing that would make me feel better would be if people wrote down everything nasty they have to say about me so that I can be punished for hurting a very dear person. One of the nicest people in the world, actually. Someone who would do anything for a friend, and who has. Someone who felt like a sister to me, so much so that I said something that only a sister would feel comfortable saying about another sister.

So I'm just here, hating myself for being stupid, again. Some things never change!

Loving...and not loving

We LOVE our puppy! All of us are crazy about her, except Dagny (but I did catch her sleeping by Hope's kennel so though she acts ambivalent I don't think it will last long). I'm spoiling D, though, and giving the cats their TLC too. And ALL of them (including Phineas the rabbit) are showing Hope who is boss - all of them! It was hysterical to watch my arthritic rabbit give Hope the business!

In other news, Sybil could not start chemo today. The appointment was scheduled for the afternoon but the infusion will last so long it needs to be a morning appt...as she will get hydration before and after the chemo drug infusion. So we are going to have another go at it on Wednesday. And just to be proactive, we scheduled the next 5 treatments for Sybil for first thing (for the Dr.), every third Wednesday at 9:30am.

Sybil is amazing, didn't seem to be as pissed off as I was that she had to sit and wait for about 1.5 hours, get her port accessed and blood drawn, and NOT get her chemo today as I would have been. I would have probably gone crazy, but she was a cool customer.

So more updates will follow....I need to go to bed to be ready for early morning puppy potty appointments!

Hope

We decided to welcome some sunshine into our lives...and here she is:

We've been thinking about getting a puppy for a while. Yes, we have a million pets! They are all becoming senior citizens, though - Dagny is 11, Maddie is 14.5, Annie is at least 13.5, and our remaining bunny, Phineas, is 10. Those are some old pets! So we wanted to bring a little life into the roster, while Dagny is still not too old so that it would drive her crazy (and D could use a diversion)...someone who could help us (hopefully way down the road still) when we lose our darling old pets.

I had Irish Setters growing up, and finding this puppy was a whirlwind. First we got it into our heads, then we found one in California and I whined for Bill to let me fly out there in mid-December to pick it up. Last night he found this litter in Lansing, and today we drove there and returned with our new girl.

So crazy. Yes, I have a surgery coming up in 2 weeks. Yes, Sybil is starting chemo TOMORROW. But we have had a crazy year, and sometimes you just react to craziness by being crazy.

But seriously, I have three of the most gentle kids ever (at least with pets, if not each other)...and this puppy has the potential to be THE puppy they grow up with. And sometimes, you can't just let cancer dictate your whole life. I think a part of us did not want to make everything wait because of cancer (and hey, at least we didn't find a puppy before chemo, like we were considering!).

Wish us luck! Actually, don't. I'm saving my luck for bigger things...and I think this is going to be fun!

OH...and we are thinking we'll call her Hope.