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Drumroll please: ROUND 6!!

But first, the catch up.

At first round 5 was going really well. I was fatigued but I never got the seriously awful stomach issues that I'd had in previous rounds. I had trouble drinking, but I did *much* better eating, and I really thought I was doing well. I made it all the way to 7 days out from chemo and then made the mistake of declaring that I was over the hump. ROOKIE MOVE. That night I developed a cough, and the next day I started running a fever. By 5 pm I was in the ER at El Camino checking myself in for IV antibiotics to deal with the fact that I'd developed atypical pneumonia. They admitted me and I stayed from Wednesday night to Friday afternoon. Oddly enough it was actually a really nice couple of days. I hadn't been feeling well and they were on top of it, they were good about letting me sleep at night, and a couple of days of staying in bed, watching movies, and having food show up at regular intervals seemed to be just what I needed. I suppose I shouldn't recommend a hospital stay as a vacation, but you know, if the shoe fits... :)

Once I got home I was still very tired and taking a deep breath was not easy. I discovered that posture was very important and it definitely helps to know when you're slouching if you can't breathe when you do. So hey, good for my ability to sit up straight! I spent the weekend resting and then slowly worked on cleaning up the house a bit before Thanksgiving. We did a very small dinner this year, just us and Jen and shofixti and it was perfect. Charles made me filet instead of turkey, too. He loves me. <3

My bout with pneumonia has made me more wary of going out in public though, so I think I left the house something like 3 times between when I got out of the hospital and yesterday. One of those was to brave the mall and get the kids picture taken with Santa, and really, that was good enough for at least a few days. I usually take them in the middle of the week, going on a weekend was rough. They did great though.

Yesterday was my pre-chemo check in with my oncologist, and as usual she had new information for me that I *really* think I should have had before. Like, the fact that radiation (barely mentioned as we've gone along) is every single day for 5.5 WEEKS. How did that not come up before? I can't go anywhere for a month and a half because I need to be able to be at the hospital every single day, that's something that should have been mentioned! And she still won't actually schedule the radiation, because she is going to try to convince me to do the second set of chemo. I keep telling her that I'm really not willing to sign on for that without compelling medical evidence that is better than "I want to." That's her whole argument so far, she'd really like me to do it. That's nice. I'd really like me not to do it. Also, and for the first time ever, she told me that beyond the 5.5 weeks of radiation, and the 8 months of targeted hormone IV therapy once every 3 weeks, I also need to take a targeted therapy pill once a day for TEN YEARS. Um, what? And when I looked at her like she was a crazy person for thinking I knew that already, she told me I must have forgotten. And then spent the rest of the appointment not telling me anything else about my future treatment, because I'd "just forget." I honestly started to feel like she was gaslighting me, it was bizarre.

So I left her office in a pretty bad mood, and then called to schedule a consultation with my surgeon. I'll go see him on the 8th, talk about my surgical options, and then I have the pre-surgery MRI on the 20th. Hopefully everything comes back with the information that we want and I can go ahead with a very simple lumpectomy somewhere around the 26th. I'm hoping to avoid having to take any lymph nodes; I hear that when you do that surgery it requires drains which sounds super gross. (Obviously I'll do it if they say that it's necessary, but I'd sure rather not.) The rest of my day yesterday was kinda crappy, I had trouble getting my mood back up again. I managed by around 10 pm, with help, and I got most of a decent night of sleep. For some reason (maybe I took the pre-chemo steroid too late?) I woke up at 4 am *totally* awake. Tried to get back to sleep for about an hour and then gave up. Instead I enjoyed the quiet morning, worked on C4's Christmas stocking, and just took it easy. Drove him to school, headed for the hospital, and here I am. ROUND SIX. LAST ONE! It doesn't feel like as much of a victory as I'd hoped it would, knowing how much more hoops there are to jump through before I get to say I'm finished, but it's still an important hoop. And definitely one I'd really rather I never had to do again.

Round 5, here we go.

We left our intrepid cancer patient mid-round 4 in the last update. I survived, but I never got past the super tired phase. I slept a *lot*. All the way up to the day I was supposed to do my pre-chemo bloodwork, and found my platelets were at 43. A "normal" person has something in the 200-400 range, and chemo isn't safe below 100. We hoped they would go up over the weekend so I could do my scheduled round 5 on Monday, so I came in for testing again early Monday morning. The platelets only made it to 92 so they sent me home, no chemo that day. My morning was then taken up with phone calls and emails back and forth between me and my oncologist talking about what to do next. She wanted to delay a couple more days and do the chemo on Wednesday. I *hated* that idea. Part of it was just that I didn't feel good, and my body was wearing out, and if all we were going for was "just barely healthy enough to poison," that didn't sound good to me. The other (and admittedly larger) part was that I had a Disneyland trip planned for Dapper Day that moving the chemo would ruin. There would have been no way I would recover in time to go; it was pushing it by the original timeline. So the combination of feeling so worn out and losing the thing I'd been looking forward to just sort of broke me for a little bit. I'm really lucky that it was one of the days that Theresa was here to watch Clara for me; she took Clara out for the day and let me get everything sorted out without having to worry about being Mommy at the same time.

So, after some back and forth and only one bout of crying at my doctor we decided that I could get a two-week pass on chemo, as long as I came in for a single-drug treatment on Wednesday. It was the lowest impact one in the cocktail so I was fine with it, and it made my doctor feel better that we'd at least keep a minimum of the drug in my system for the duration. So that was the compromise, and that's what we did. The drug had very little impact and I got to start to feel what it was going to be like to be through with chemo for a little bit. My energy started to come back (though I still wore out fairly quickly), my house got cleaner, I took an entire car load of crud to Goodwill, and my tastebuds rebounded. I was able to stop taking all the acid blocker drugs about 5 days ago, and over the weekend Pepsi started tasting good again. I still drink it super slow to avoid the carbonation being an issue, but it's nice to have it back at all. :) Overall, it was a really desperately needed break and I'm glad I fought for it. I still have two more rounds to go, and then surgery and radiation, but now I know that recover starts pretty quick. I know that this is going to be something I will get through, and I WILL feel like me again one day. And having that concrete evidence is doing me a world of good going into these last two rounds.

So today is Real Round 5, not that fakey round 5. My doctor is trying really hard to be nice to me; she initially offered to take out one of the drugs in my mix that is likely causing about half of my side effect issues. Then I had to go and be super honest and tell her that the pain I felt in the original tumor (that I have not felt since chemo started) has returned, and I felt it a couple of times over the last two days. It's not constant, and neither one of us feel anything in my breast tissue where the pain is located, but it was enough for her to rescind her offer. She would feel a lot better if I do these last two rounds by the book and I'm okay with that. I got my break, I can do this now. Yes, it's going to suck. I'm planning on the next 6 weeks being a series of different levels of suck that never actually get all the way to not-suck. Should be a really good time. ;)

But for today, I'm okay. I can eat (and I have, twice since I got here). I'm watching Scrubs and playing with my laptop. I had Door Dash bring me a Pepsi. My polling place is the main clubhouse where I live so it'll be easy to get there when I'm finished here. And Round 6 is *on the calender.* I can do this. Damn it.

Still alive. Not much kicking.

So, we left off with day 1 of round 3. I don't really feel like going into day by day detail about it, but let's just say round 3 SUCKED. I lost 16 pounds in 8 days (mostly dehydration I'm sure), I ended up going in for IV fluids twice, changed acid control meds again, saw a GI specialist, learned that technically there isn't anything wrong with me. Which on the one hand is somewhat validating; I've always had a weird, sensitive stomach, and I've always taken care of it by controlling what I eat. Guess I was doing a good job. Chemo, however, has thrown that all out of whack and I can't fix it anymore. He even did an endoscopy so he could be sure I didn't have an ulcer or other damage in there, and it's all good. I'm just special. Yay...

So when it came time for my pre-round-4 checkup, I was pretty firm with my oncologist that I need some help here. If the GI doc says I'm fine, but chemo makes it so I can't eat or drink anything for a week, we have a problem. Seriously. And I did a bunch of research about my particular chemo drug cocktail, turns out that a "full course" is considered 4-6 rounds, none of this "6 rounds then surgery then 4 more rounds" stuff she was talking about. So what I found out is that she didn't mean I would do 10 total rounds of this set of drugs. She wanted me to do a full 6 round course of this one (TCHP, if anyone wants to look it up), then surgery, then radiation (which was NEVER mentioned before, I'll add), and then an additional 4 rounds of a *different* chemo cocktail. ACP, I think she said? Well, turns out I don't care, because as of right now that's a big ol' NO from me. I've read hundreds of treatment plans online and I can't find even ONE person who did 6 rounds of TCHP and then went on to do 4 rounds of any additional chemo. Her reasoning is that I'm young, and she really doesn't want it to come back. Hey, I don't either! But if I don't have cancer, which I won't by the time I'm finished with surgery and radiation, what on earth is the point of doing chemo to my perfectly healthy body? I will already be on a hormone therapy regimen for a year that is supposed to stop reoccurrence, that sounds good enough to me.

Anyway. She reduced the amount of steroid I take before and after chemo in the hopes that it would bring down some of the stomach irritation, and scheduled me for IV hydration in advance, but that's about all anyone could think to do to help me for round 4. Which, honestly, was not terribly encouraging, but I was hopeful anyway. I'm dumb like that. ;) I did round 4 on Monday the 3rd as scheduled, and things seemed pretty okay. Usually I started feeling pretty crummy by Thursday, and this time I was still eating and drinking okay by then so I got encouraged. Maybe it would be better! Friday was okay too, aw yeah, moving into the weekend... then it was Saturday and it all got crappy again. It's hard to explain what happens, but it's not a nausea thing. I haven't thrown up this round at all. It's like there is so much acid in my stomach that I can taste it in my mouth, and it's in my throat (it isn't really or it would burn), and it's making it so I can't swallow anything else. Physically I can swallow, so I can still force myself to drink a little but it's very difficult. I feel like there is something else in my throat already and trying to swallow anything else sounds just horrible. So that was my weekend, and it was also just super demoralizing. I *really* thought maybe we had this figured out now, but it turns out we don't, and probably never will, and this is just what it's going to be like for me every time. Blech.

So, that's pretty much where we are. I went in for IV fluids yesterday and I'm going in again today. In the past 24 hours I've eaten two cups of Jello, an applesauce packet, and four Saltine crackers. And one ravioli! Though that was probably pushing it. I'm hopeful that I'll be eating again tomorrow, but I don't know. I doubt I will today. And I really miss food. BUT. If this really does only go two more rounds, then I *will* be eating food again by Thanksgiving. And it'll even taste good again by Christmas. And by New Years, I'll be finished with chemo, and finished with surgery, and moving on. 2016, you're a mean kid, and I can't wait until you're over.

The quick-ish catch up post

Round 1: Chemo day itself was VERY long, I was there for about 9.5 hours. But that's how it goes on day one, they want to make sure that you aren't going to have any allergic reactions to any of the individual drugs. I didn't, and that's good news, and I actually felt pretty good that day and the day after. I started getting tired on Wednesday, and I thought maybe I was starting to have some nausea on Thursday but it was mild. We left on our vacation Saturday. By Sunday, I was having serious issues making myself eat. I didn't feel sick, it was hard for me to put a finger on it, but it turned out that I was having acidic stomach issues. I always have, but I've also always controlled it with the food that I eat. Turns out that you can't do that anymore when chemo ruins the lining of your stomach. Drugs are now necessary. So I started taking Zantac, and things turned around quickly. By that night I was able to eat a small dinner, and for the rest of the week I ate pretty well. Couple of little issues as I figured out what doesn't taste good anymore (chemo mouth is real, and it makes everything taste kind of metallic), but nothing serious. I was able to enjoy my food just fine in DisneyWorld, and that's key. ;)
One sad thing that I've been avoiding writing down: I can't drink Pepsi anymore. Between the acid not loving carbonation, and the metallic taste, it's just not good anymore. I dropped a 20 year Pepsi habit in three days. Now, before anyone tries to tell me what a great thing that'll be for my health in the long run, let's remember one thing: I'm not a quitter. :-P

Round 2: The chemo itself was shorter, but I had to go in early to have my port put in. So it was another long day. Good though, and again, I felt fine when I went home. Tuesday and Wednesday were okay, and then got slammed on Thursday with a return of the fatigue and my stomach was not happy. I kept thinking that I could fix it, eat something different, I dunno. But I was wrong, and after spending the entire weekend in bed not being able to eat anything, I caved and called the chemo nurse on Monday. After she told me what medication to add to my list, she also reminded me that seriously, waiting all weekend to call was dumb. I'm not supposed to feel that crappy, ever. Yes it's chemo, and it sucks, but that's what pharmaceuticals are for. Damn it. So now I have two acid-reducers to take every day, along with Imodium, and it's better. I haven't really made it back to "good," but I did hit functional in time to have about 5 good days before going back in for round 3.

Round 3: That's today! And today went well. I was in at 8 am to do my blood draw, 9 am saw the oncologist to make sure everything was good, and then chemo started at 10. Talked to the doctor and the nurse a lot about my stomach and various options for trying harder to keep it in check this time around, and I'll be better about alerting someone as soon as it's an issue instead of waiting to see if I can fix it on my own. I also asked if there's a possibility of reducing the number of rounds I have left, since neither the doctor nor I can actually find the tumor anymore. Unfortunately, he told me that so far no one has done a study of what happens when these tumors disappear so fast under this combination of drugs, and if there is a recurrence in patients who then reduce the number of rounds they undergo. So medically he can't recommend cutting down on how many rounds I have left. Kind of a bummer, but it just means I need to be that much better about getting these side effects under control.

Chemo itself is easy, really. I sit there and play on my computer or work on hand finishing sewing work, and the drugs just drip along. I was finished a little after four, drove to Harker to pick up C4 from school, and got home just in time to have a lovely dinner delivered by Summer. And now: bed!! Glorious bed.

The beginning of the story.

I started a Caring Bridge site to document all my cancer stuff, but then I realized that it requires a login. That's annoying. So I'll be cross-posting all my entries there over here, and making the ones here Public.

Hi! Thanks for coming by! I suppose this is the time and the place to write it all down, huh?

Throwing in a cut, this got longCollapse )

Rant mode: engage!

I made a decision this morning based on a lot of FB articles and comments and stuff, and I didn't feel like starting a flame war, so I'm putting it here instead. I would like to make it clear that I am open to reasonable discussion, like always, so if you profoundly disagree with me I don't mind if you say so. I'd just like you to be fair about it and if you do, you'd be willing to change your mind if presented with the right evidence, just like you'd want me to. No soapboxing, 'kay?

That said: I do not plan on teaching my daughter modesty. I've decided it's a word and concept laced with meaning that I don't want to convey, and I'm just going to skip it entirely. Instead I choose to teach her self respect. And if I do that well, she'll get so much farther than modesty would have taken her anyway.

I'm practicing now, when I see teenagers walking around in clothes I'd NEVER wear. I feel that gut reaction of "Not MY daughter!" and then I ask myself why. Why not? What is it that is bothering me about those clothes, that look? Is it *my* discomfort with *my* physical body? Is it some message *I* internalized somewhere along the line that I don't even believe in anymore? And the answer is always yes, to both of them. Do they look like they're uncomfortable? Are they tugging up or pulling down on anything? Okay, then maybe fit is an issue. I'm a seamstress, I get fit issues. If not... and they aren't too cold, or too hot... then who cares?!? The idea that we've decided we all get to judge someone based on what they are wearing (or not wearing) is making me so angry today I'm actually tearing up. That girl wearing the short shorts and crazy shoes, she's a PERSON. She has thoughts, and feelings, and she's so much more than the clothes she's wearing. And if she put those clothes on today because she LIKES them, because they make HER happy, then that's it. End of discussion. I don't care if they leave less than nothing to the imagination. It's her body, her choice.

But the thing is, she has to have self respect, or she might be doing it for the wrong reasons. Is she wearing them to make someone else happy? Because she thinks that the only value she has is the looks that she gets from others? Because she has such low self worth that this is the only way she can think to get attention? Then that's not okay. But the solution isn't to force her to wear something else. You can't cover up a lack of self esteem. So telling that girl (or boy, or anyone) that they must be "modest" in their mode of dress accomplishes nothing. It's just more training without meaning. We're not drilling times tables anymore, right? Let's not drill this either. You want kids to dress in a way that is appropriate to the event? Teach them what that means. Don't just create a set of inexplicable rules and walk away.

Oh, and let's try not to get hung up on clothes being "distracting," okay? Because if my clothes are distracting me, then we're back to a fit issue. Is it itchy? Is it too small? Am I cold or hot? Those are legitimate distractions, and I need to learn how to to fix that for myself. But if MY clothes are distracting YOU, guess who has the issue? It's not me. This is something else that we can really only fix if we start putting the responsibility in the right place. I find my daughter to be terribly distracting. She's got these big, beautiful blue-grey eyes that look very surprising in her vaguely Chinese face. But that's not her problem, she's going to have those spectacular eyes her whole life. She might have a classically beautiful body to go with them, who knows? But if she does, what I need her to know is that it's her job to take care of her body, and to feel good about living in it. And however she decides to decorate it is up to her. It's not up to anybody else to tell her that she's a "distraction to others" when she dresses in a certain way. That's a short step from "well, did you see what she was wearing? Not surprising," and that's just so much crap I can't even write anymore about it without resorting to expletives.

I've practiced this rant at my husband, and so far he hasn't told me I'm utterly full of nonsense. He's a good check that way; if I WAS utterly full of nonsense he'd tell me. So I feel like I'm on the right track. :) Obviously we both have a long way to go before we're dealing with a teenage girl and all the fun that entails, so we'll see how it all holds up to reality. But I feel pretty strongly about this one.
Early last week I started writing a post about how hard everything had been for a few days. And it was, Monday and Tuesday of last week sucked out loud. But it's never been easy for me to write about stuff like that because it feels a lot like whining. And then, before I could even get the post written, things started getting better. Little things, like scottish_jessi coming over to give me a hand with the kids, and shofixti taking me to an unexpected dinner out (while Jessi had the kids), and tersa bringing my fabulous ceramic cupcake over to the house rather than making me wait for it for three more days. Nothing earth shattering, but each small kindness felt like a drop of optimism filling up my reserve again.

And now it's Sunday, and I am tired, but I don't feel emotionally beat up anymore. Things are busy and Clara isn't much of a baby anymore and I swear cwsmithiv might as well be a teenager for the attitude he displays half the time, but it's okay. It's normal. It's life, and I'm happy to have it.

Also, no time for wallowing. SO MUCH WORK. Someone asked me recently how much I sew, and I answered that I have as much work as I can handle. Which is entirely true, and sometimes a little more than that. The difference is that I vowed to stop doing it for free. I thought that was going to mean that I would have less work, because if I say no to doing it for free, then I won't have so much sewing to do, right? Um... actually, it seems to mean that I get more *paid* work instead. Which is fabulous, and I like the idea that I can contribute to the household (or at least make it so I have very little negative impact on the family finances), but I'm also a little disappointed by the lack of free time. I was sort of looking forward to it. ;) I might just have to say no to a few more things come June because I'm going to have two kids all day and not much in the way of summer camp. But hey! Maybe next summer, my sewing money can PAY for summer camp! What an awesome idea.

One year ago today...

... I was probably still in Labor & Delivery, finishing up with all the afterbirth messiness before moving to my room for the rest of my stay. And Miss Clara was about an hour and a half old. Now she's sleeping next to me in my bed, all 30" long and 18 lbs of her, and I'm just amazed that it has all gone so fast. She's a walking, babbling, crazy little creature now who is hell bent on following her brother and breaking things. Possibly herself, she's not really worried about it. She has a lot of faith in things to just work out the way she wants them to. :)

Her brother thinks that now that she's not a baby anymore, we need to talk about having another baby. He likes having a baby in the family, so let's make a new one. Um... no. You're cute, kid, but no. Mommy and Daddy agree on this one, two is plenty. As it is we have no idea how we're going to cram all of our lives into the 24 hours we get per day. We sat down last night to go over what is supposed to happen in the next four or so weeks, and it's just kinda nuts. Wait until Clara has friends and playdates too!! When can C4 start driving? :P Or working, child labor can be useful.

This week Daddy Charles has an internal convention at work, so I won't see him much. And I have a daisy chain of sewing projects that will take me pretty much through the next three weeks. One after the other after the other. It's good, I like knowing that I'm being a mildly useful human being beyond keeping my children alive, but it's tiring too. As always it would be easier if I could count on working while kids are sleeping. C4 is finally a decent sleeper; I won't call it "good," he still has nightmares too often for that. But at least he goes to bed at an expected time and largely stays there until called upon in the morning. Clara... yeah, not so much. My dream of having one good sleeper remains a dream. She goes to sleep when she feels like it, and stays there for a completely random amount of time before demanding attention of some kind. It's stressful, not having any clue how long she'll sleep before you have to drop everything and deal with her again. Maybe I'll get a bunch of work done, maybe I'll get three steps out of the room! You just never know! The best way to get her to sleep is to let her fall asleep in my bed, and then sit next to her with my laptop until I feel like sleeping too. Good once in awhile for catching up on email or doing my nails, but not ideal every night. Makes me feel like I'm wasting precious sleeping baby time.

And now, the highlight of my day: I'm going to go check the mail. Yes, I'm a weirdo, we knew that.

Moving on... kind of. :)

Today was a milestone (one shofixti says I've claimed several times already, but this time I MEAN it): I worked my final shift at LAPP as cwsmithiv's parent. If everything goes according to plan I'll be back in a couple of years with Clara, but this is still kind of a big deal. Three years of parent participation preschool, two years on the board, and it's all wrapping up in the next week. Like anything, it's mixed. I can't say that I'll be sorry to spend a couple of years parenting only my kids instead of a classroom full of them, but at the same time I will miss the support of all those other parents and the teachers. It's been a wonderful village, and I know that my kiddo is a better person for what we've both learned there.

In other news, Clara had her two month checkup last week. 11 pounds, 9 ounces, 22.5 inches long. She's in the 50th percentile for height and weight; her brother was in the 75th for both at that age. So she's a bit dainty compared to him. :) She doesn't eat like a dainty thing, that's for sure! My own personal achievement is that I've now exclusively breastfed her about twice as long as I did cwsmithiv and still going strong. I try not to spend too much time regretting that it went so poorly with him (though part of me still really does) and just focus on being grateful that it's working out this time. It's definitely nice to not have to pack food for her, I've got it covered.

And now I'm kinda stuck. There are all these other things I feel like maybe I "should" cover, for posterity. But none of them are really sounding better than closing the computer and enjoying some quiet knitting time (have I mentioned that the baby is sleeping 9 hours a night, consistently? YAY.) while I watch non-child-appropriate television, so I think that's what I'm gonna do.

Exercising thankfulness

It's kind of funny, because there are so many times that I will compose a blog entry in my head. Something will happen, I'll think of how I would describe it, and then the time to write it out just never comes. Today isn't like that. I don't have anything I really want to write about. Things are happening, some good, some bad, possibly all post-worthy. But none of them are leaping to the front begging to be documented.

I just want to record that right now, in this moment, I have this wonderful feeling of satisfaction. With where I am, who I am, what I'm doing, where I'm going. The things that need work will get the attention they require, the things that should be appreciated are. I have an amazing family of choice, a number of children that feels complete, and friends that step up when it counts.

And now I shall toast this feeling with some Cookie & Cocoa Swirl from Trader Joe's on graham crackers, and then mix up colors for tomorrow's tie dye adventure. Life really is quite good.