Well, here I am.

Been checked out for a while. I guess it's just been more of the same, more of the same.

We had a lovely Thanksgiving at my sister's house with both sides of the family. The kids hung out and played. The food was fantastic, and so was the company.

I'm through my last chemo treatment now. Got the drip on Friday, so things are hell at the moment. I got lots of rest over the weekend, which seemed to help, and Dave stayed home to help for a couple of days, but it's one step forward, two steps back, as usual. It was really, really hard to get Sam off to school this morning. Sometimes it's all I can do to be as patient as I want to be with him.

The last time I saw my oncologist, he surprised me by saying, "This is the last time I'll see you until after surgery!" That was a pretty exciting moment - to know that I was really nearly through this chemo crap and that I could move on to the next thing. Later on, I told Jenn (my chemo nurse), "You know, when you're in the middle of something like this, you never really allow yourself to think about what life is going to be like when it's over. But now I'm starting to think about that."

Well, I'm revising a little bit, because what was previously just the big blotch known as MASTECTOMY is starting to become a little more defined around the edges, and frankly it's kind of scary. Now that I'm done with chemo, things are coming into focus and I'm finding there's a whole new set of things to be anxious about.

Nothing to do for now. I'm having a mammogram and ultrasound on January 7, then my surgery consult on January 14. Probably the surgeon will say, "Let's go on Monday!" or something crazy like that, because obviously I don't have anything to get organized before major surgery. I'll just have to try to be flexible and go with the flow.

I'm getting a lot of practice at that lately.

WBCs, and the light at the end of the tunnel

I'm down to my last two big treatments, and I'm starting to see the light at the end of the chemo tunnel. Nevermind surgery and radiation - I'll leave that fun stuff for 2010!

The routine has been this: show up at Kaiser for blood work on Thursday, then return on Friday for my infusion. I get the big chemo treatments every three weeks, with just Herceptin on the off-weeks.

So far, I've felt surprisingly good once the immediate effects of the chemo have worn off. That usually takes about a week. Then I'm kind of back to my old self for two weeks. So all in all, it hasn't been that bad.

Fortunately, my blood work has been normal to this point. Chemo reprograms all fast-growing cells and is particularly unkind to blood cells, so people on chemo are generally prone to anemia (red blood cell deficiency), infection (unimpeded due to white blood cell deficiency) and clotting problems (caused by platelet deficiency). I've been taking a medicine called Neupogen which encourages my body to make white blood cells. Unfortunately it's taken by injection, so I have to poke myself in the belly every day for 7 days after my treatment.

(I'm not new to poking myself in the belly, but at least last time I got a baby for my trouble).

Anyhoo, my white blood cells are officially off the reservation. Yesterday's white blood cell count was below normal and the neutrophils, which are baby white blood cells, are wiped out. Today, my chemo nurse told me that they almost couldn't treat me with Herceptin today, which would have sucked hard because I'm determined to be DONE with chemo by Christmas and am not interested in any delays.

Bonus: Sam has a wicked cold right now. Please, please, please don't let me catch his cold!

So, now we're upgrading to 10 days of sado-masochistic belly sticking after the next cycle. Just so you know, I do this at about 6 am, so feel free to call me and keep me company. I start next Saturday.

Okay...

Okay! Seems like things are going along swimmingly at the moment!

Kath and Chris took Sam yesterday for a 24-hour chemo-weekend respite as usual. (You girls rock!) Instead of lying on the couch the whole time, I actually spent some quality time with the hubs. That's rare because we hardly ever ask anyone to watch him, so we usually have to take an afternoon off from work to hang out together, except for the 30 minutes between when we put Sam to bed and when I pass out in the evenings. This reminded me that I need to look for a teenager to babysit at home, maybe after the boy turns 3.

Dave and I went and shot some pool (no beer for me :( ), then grabbed some dinner, then went for ice cream. I was surprised I was eating so much, but I decided to just go for whatever I wanted instead of trying to restrict myself too much.

This morning I got a lot of planning done, and now Kath and Sam are due back any minute. I missed him. I don't know if I'm ready to run a 5K or anything, but I think I can hold my own this afternoon. Yippee!

Cycle 4

Wow! I can't believe it's been so long since I've posted to this blog!

Started cycle 4 today. I can't believe I'm almost 2/3 done with chemo. It's possible I'm still in just the very early post-chemo, pre-sick phase of cycle four, but (knock on wood) I feel pretty good right now. I don't remember feeling this good last time the night of chemo, but I don't want to jinx it.

I had a wonderful dinner last night with my sister, my mom, two of my cousins, and an aunt. It was so much fun to hang out with everyone. We were laughing so hard, I'm surprised we didn't get kicked out of the joint. Victoria's Gastro Pub in Columbia? Definitely worth a visit.

I have been anxious to find out if I'll qualify for genetic counseling to determine if I have one of the breast cancer genes, which are also markers for ovarian cancer. Since women with the gene who get cancer in 1 breast are 70% likely to get cancer in the other breast at some point (per one of my surgeons), I think it's worth exploring to determine if I should have both breasts removed next year when I'll be having a mastectomy.

My oncologist's first reaction was that my insurance might not pay for it because I have no family history. That's pretty disappointing, but he did get me a consult with the genetic counselors, so I'm trying to schedule that now. At first I thought that meant that I would be able to get the test, but now I'm thinking it means I get to have an appointment with the person who will decide if I get the test. So my hopes are dashed somewhat.

Dave isn't in favor of the test. He's been reading about false negatives and stuff. But I don't want to go through this again. Not to mention, ovarian cancer is very insidious. It jumps to stage four with few symptoms, which makes removal of the ovaries (if I have the gene) a pretty logical option (with a bit of a delay, if we decide to have another baby).

I'm not trying to freak out about this or anything. There's time. I'm just saying it'd be good to have the facts. Not to mention my sister's pretty interested in the results, and I can't say I blame her.

I did find out last night (in between bouts of tea coming out of my nose from laughing so hard) that another aunt, who passed away a few years ago, had breast cancer. She didn't die of it, but she had it, so I figure that helps my chances.

I should say that I don't really have too many horror stories about my insurance. I realize lots of people do, but Kaiser's been pretty good to us so far. It's been a hellish ride, but that's just the nature of it, I think. They allowed pretty much every test I could have. So I'm hopeful this one will happen too. If it doesn't, then it doesn't and we'll just have to stay on top of it, I guess.

Anyway, finger's crossed that I feel this good tomorrow and Sunday, people.

Feeling like updating

So I'm feeling like updating, but I don't really have anything too uplifting to say.

Today, Sam had a field trip to Baugher's Orchard. He brought back a little pumpkin and couple of apples. Apparently there was a little hay ride as well. Would have been a fun trip to take, but I just didn't have it in me. He was such a buster this morning. He crossed his arms and announced he didn't want to go to school. ever. again.

Dave was home this morning to meet our home builder and do the final walk through, which basically threw Sam off his game and caused the tantrum. I get that. But my chemo-addled brain isn't exactly with the program, so I was kind of annoyed by it all this morning.

I tried really hard to have an intelligent conversation with my sister about work stuff this morning, but I had to give up on working by about 10 am. There was just no way to make my brain conform. And as we know, no work equals no moolah. And that sucks.

Also, my designer's girlfriend is about to have a baby any minute, which isn't really helping my stress levels.

Oh well.

Day 3

Day 3 is probably the hardest and most depressing day of the whole cycle. And, for those of you who are counting, today is day 3.

Yesterday, Dave's allergies got really bad, which sucked because I was kind of counting on him to keep Sam busy all day, and it turned out he was on Benadryl, so I just toughed it out. Kath came to get Sam a little after 4, and he was ready to go with her, but apparently started crying for mommy in the car a little while later. I feel bad when he does that. I know he'll get over it, but still it's scary for Auntie. And then, of course, I missed him all night, especially when I put one of his books in his room right before my bedtime and he wasn't there.

I kept myself busy by reorganizing my office, which I guess means I have some energy, but I have to say it's the kind of nervous energy you get when you don't know what the hell's going on or what's going to happen next, or if you should take that medicine now or wait an hour. I'm thirsty, but I don't know if water will make me nauseated. I'm bored, but I'm afraid of Quizno's commercials. I feel okay, but I just never know when that's going to change.

Overall, I'm doing much, much better than last time. I have acupuncture tomorrow, which will be a plus. Everything's going pretty much okay, except that I still have cancer.

Rah, Steroids

I guess I've been missing in action for a while. That's probably because I am using all my brain cells to keep track of my freakin' medication!

This morning I got to start my steroid, which is making me feel like a super-hero. Rah, steroids! I won't sleep tonight, but that's okay. I'm actually starting the 'roids later this time (my treatment is tomorrow) and will get to take them longer, which I'm hoping will help me avoid the worst part of the nausea. I also got a sweet anti-nausea med called Emend which is supposed to kick ass. We'll see how it goes.

I'm making Dave take me tomorrow, because between the steroid, the immodium, the Emend, the vicodin and - oh yeah, the chemo - I'm probably going to be a space cadet after my treatment is over. Probably not a real great idea to drive in that state.

If anyone is in need of a good laugh, give me a buzz on Saturday or Sunday as I will be completely stoned.

In other news, I'm thinking about grad school (again). I really have no business thinking about grad school, because the timing is just atrocious, but at the same time, I've got this whole mortality thing to deal with, so I guess this is really the perfect time to think about doing things I've always wished I'd done. So I'm reading a lot (in a disorganized effort to get ready for the GRE) and talking to some old profs for ideas and (hopefully, eventually) recommendations, and generally feeling it all out.

I'm also thinking about the baby thing again. Who knows if it will even be possible? But if it is, I'd really, really like to have another baby. Dave isn't fully on board, but I think he'll go along if I really want to do it. I'm not pressing the issue right now because we totally have to get through the chemo thing first. What impact will that have on the grad school thing? Too early to tell.

It occurs to me that planning is kind of pointless. Because you think you have a plan, and then whammo! You have cancer. Or whatever. But if you don't plan, nothing happens, and you wake up when you're shriveled and gray and wonder what the hell happened. So maybe the best we can do is flexible planning. Have a goal, but don't get too attached to the time frame. Because shit happens.

What do you think?

It's a bird! It's a plane! It's...Human-Girl?

Ten days into cycle 2, Human-Girl rips off her sea bands and re-emerges, ready to do battle with websites that are hopelessly behind schedule, a mounting pile of unfolded laundry, and one tiny person in desperate need of a bath!

See! Family life return to normal as chemotherapy agents retreat through Human-Girl's kidneys and down the drain.

See! Human-Girl eat something other than pizza and oven fries.

Experience! The joy of feeling like an actual person.

I'm back, and it's awesome.

Chemo brain

Tell me it's not just the chemo brain. This is confusing, right?

Hi Dr. H.,

I think I've confused myself, so I just want to confirm my medication schedule with you.

Hydrochlorothiazide - take 1 pill daily

Decadron - take 2 pills twice a day for the three days prior to start of cycle, for a total of six doses, then continue through day 5 of chemo cycle.

Immodium - take 2 pills prior to chemo to counteract diarrhea and cramping from Taxotere

Vicodin - take 1 or 2 pills prior to or just after infusion to prevent back cramping

Emend - take the white and pink pill one hour prior to chemo, then take one white pill on day 2 and 3 of cycle

Should I continue to take Zofran and/or compazine? If so, what are your instructions?

Also, I'm not supposed to do anything special for the Herceptin infusions, right?

Is that everything?

Thanks,
Ann

Banner day!

This last round was rough. Maybe not as rough as the time before, but it's kind of like comparing pregnancies. You can't really compare this one to the last one because by the time the kid got here, you kind of forgot how bad it was. And so it goes.

I finally got the chemo in on Friday. I had a pretty nasty reaction to the taxotere right away (you don't need me to describe it here). That faded, and then I felt wonky, but surprisingly less nauseated all day Saturday. Rah, steroids! Saturday night, the 'roids wore off.

Sunday was the rolling around, clutching my head, popping waaaay too much Zofran day. Yuck. Didn't throw up, but I was out of my head and, on top of it, fairly enraged. Like, why am I going through this? I thought there were drugs for this!?

I spent Monday morning curled up in a fetal position on the couch. Thank god Dave stayed home to manage Sam. At around lunch time I ate a potato and got it together enough to get down to acupuncture only half an hour late. Rah, acupuncture! It helped a lot and kept me together until 6 am today.

6 am today - compazine, tylenol, and agnst. Dave stayed home again so he could help with Sam and take me to my appointment with the oncologist. I felt like dog shit. One thing about oncologists is they are always ready to medicate. Normally I'm not down with that, but in this case, I kind of am. Because when you strip it all away, you've got to take the chemo, and why not make the chemo as painless and safe as possible?

So I have a whole new protocol. Next time, I get to continue the sterioids through day 5, which will make me hyper but should really, really help with the nausea, plus he gave me bigger and badder anti-nausea meds on top of it. He also gave me vicodin for stomach cramping (always a good addition to my medicine cabinet!) and a diuretic to help with my blood pressure and leg swelling. He even offered me anti-depressants, but I said, "The best thing you can do for my depression is fix this nausea!" After all, enough is enough.

But here's the best part. The boob is better! Like, empirically. He examined me and seemed genuinely pleased with how things feel. And the bleeding has nearly stopped.

So it's afternoon, which is a better time than morning. I'm wearing my sea-bands. I had pizza for lunch. And my boob isn't bleeding. This is a good day.

Annoying

I'm more annoyed than usual because I haven't slept in 3 days. Basically, I really hope these steroids keep me from puking, because taking them is making me a beast.

So I went for Chemo this morning and my blood pressure was 151 over 90ish, which is definitely borderline high. Also, my pulse was around 50 beast per minute, which is about 30 beats slower than my normal rate. So they got me all hooked up to the IV machine and then decide maybe they should recheck all that.

I was in the chair for over an hour before they decided to call the oncologist. An hour after that, the oncologist was on the phone with the cardiologist. My BP was 181 over 110 and my pulse was 42. Weirdly, I felt totally fine, although a bit anxious.

Abort chemo. Dammit. Nevermind that I'd already had my anti-nausea meds and I was really looking forward to sleeping tonight now that the 'roids were done.

ASIDE FROM NON-SLEEP DEPRIVED SELF: Heart failure is a very definite risk with this medicine, and I'm really glad they didn't proceed with the chemo without having me see the cardiologist. But...geez!

So anyhoo, I went to see the cardiologist. She says the high blood pressure is probably related to stress (duh) and the steroid and that the low heart rate is unrelated. She's not worried about the low heart rate as long as I feel okay, i.e. not about to faint or whatever. So she cleared me for chemo and I'm rescheduled for tomorrow. We're going to keep an eye on the blood pressure and, if it doesn't come down after I go off the steroids, then they might want to put me on a low dose of meds for hypertension.

So after all this, it's 2 pm and I haven't accomplished anything. Least of my worries, I guess, but I just hate spinning my wheels. High blood pressure/low heart rate or not, the cardiologist told me to keep exercising and eating well, so I stopped for a 6" chicken breast sub on wheat (with veggies) and then went for an hour walk at the park. Got home at 4 and slammed on emails before Dave and the boy got home.

Losing a day so sucks.

Hanging in there

I can't believe I'm already nearing the end of my first chemo cycle.

It's been such a weird ride learning about how my body is reacting to all these drugs. In general, the first week was horrible, but weeks two and three were a lot better. I'm pretty much back to my old self - walking almost daily (with a little jogging thrown in) and eating well.

Things got a little wonky in week two. Maybe I was a little depressed, or maybe just tired, but I found myself hitting McDonald's a couple days in a row and making up excuses to stop at CVS so I could buy one of those enormous chocolate bars, which I would scarf in the car outside. Not good habits, and they were creeping back.

Finally nipped that in the bud, due in part to my kickass new haircut, which makes me feel like a warrior!

This is slightly unrelated, but I checked my BMI today and I'm four points away from "normal." I think that's something to brag about (just a little :) ) I haven't seen "normal" in a long, long time. And just think! I was certifiably obese back in April! (That's a scary thing to learn).

Going from a 2x to a regular old large has been amazing, and the best part is that I am finally starting to get some of those weight loss benefits that we all really long for - notably more energy. I attribute that as much to fighting the cancer as I do to losing weight.

So my next cycle starts Thursday, which means I have to remember to get my blood drawn tomorrow - no easy task given the state of my brain! My doctor gave me some steroids to take in the days preceding the infusion to try to avert the severe nausea reaction I had last time.

Family and friends have been great. My cousin in Germany has been keeping in touch via Skype, and two other cousins are bringing us dinner tonight. My parents brought us dinner on Sunday (and staunchly refused to eat any themselves). And I wouldn't even be here without the help and support of my sister Katherine and her partner Chris, who have dropped everything to come to our aid more times than I can count!

Onward and upward!

Hare Today, Goomb Tomorrow

Well, that’s done.

My hair started coming out faster today. It wasn’t fistfuls, but I’d get four to six strands each time I ran my hand through my hair, so it was time.

I didn’t want to make a big deal out of it. A number of people have offered to get their heads shaved with me as a show of solidarity, which is very sweet, and my hairdresser offered to take it off at no charge but, when the time came, I just wanted to be anonymous.

I went over to my local Hair Butchery, which was the best possible choice. The woman who cut off my hair barely spoke English. She wasn’t interested in how many kids I have or how much weight I’ve lost. I said, “I have cancer. Shave it off.” She said, “All of it?” I said, “Yes.” And she went to work.

The first time I saw the side of my head in the mirror – well, that was a little freaky – but in a cool way. I thought, “Maybe I won’t grow it back so long.”

Early reports indicate that people are in fact nicer to cancer patients.

On going bald: bring it!

It will come as no surprise to many of you that I have a special kind of twisted logic. For example, my Aunt Carolyn reminds me of Tina Turner. If you knew my Aunt Carolyn, you would understand how absurdly and deliciously twisted that is.

Also, I'm thinking about whether the drawers on my new coffee table should face the front door, rather than the couch, because it will look better when you come in the house. Whoever heard of turning a perfectly functional drawer into a decorative one for the benefit of people who haven't even made it to the coat closet yet?

Given all this, it should come as no surprise that I am looking forward to losing my hair.

Whenever I mention that I'll be losing my hair soon, my dear friends and other supportive people-in-the-know exclaim, "The hair doesn't matter! It's so unimportant! The main thing is that you get well!" But they don't understand the power of having a badge.

See, I have a lot of bad days when, for example, I tell would-be elevator passengers that we're going down when we're really going up, or I mindlessly cut people off in traffic because I kind of forget that there are other people around, or what have you. Not surprising, with everything I've been through lately, but of course most people out in the world don't know I have cancer, so they figure I'm a few sardines short of a can, and maybe they flip me the bird.

But when I'm bald, all that will change!

It's like being pregnant. When you're pregnant (hang with me, guys), the first few months are hell because you're tired all the time and you're puking your guts out and the only thing you've got going for you is enormous ta-ta's. But then, whammo! You're showing! And suddenly everybody's holding doors for you and patting your belly (even when you don't want them to) and asking you when you're due.

Aside: Maybe you shouldn't rub my head without asking. When I'm bald, I mean.

Anyway, everyone's nice to pregnant ladies, and I'm betting everyone's nice to cancer patients too. What do you think?

Darkest before the dawn

Lo! I feel better!

Just when I thought it would never end, I actually feel better. Friday was hell on earth. Saturday was about as sick as I'd ever felt in my life (until Friday). Had a killer migraine last night and no good way to fight it off, especially since there are no truly quiet places in my house right now with the dehumidifier running in what used to be my powder room.

And right now...well, I feel okay! Still have a headache trying to sneak in past the tylenol I managed to keep down this morning. But I'm sitting up. I walked outside to get the mail. Heck, I saved Sam from monster Daddy and spun him around once before I decided that wasn't the best idea I've had this week and put him down.

I am thanking god in heaven than I only have to do this five more times, and that I don't have to do it again for 2 1/2 weeks.

Whew.

Chemo

You guys, I thought I could handle this, but right now I'm not so sure.

I had chemo on Thursday. It went fine. They pre-medicated me with Benadryl, Tylenol and anti-nausea medication, then they did the chemo through the port. I felt fine when we left and even had a nice dinner with Dave, Kath and Sam.

Friday morning, I woke up at 5 am with a terrible headache and sick to my stomach. Started my anti-nausea medication, which didn't do shit. Threw up that nice dinner in the kitchen sink at 7.

I hate to be graphic, but it's been awful. I threw up every 2-3 hours yesterday. I finally went to Kaiser last night and they gave me an IV of the anti-nausea goop, which helped quite a bit, but as soon as I got in the car to go home I started to feel wonky again. Tried to take Tylenol for another headache at 1 am, but threw up again at 2.

That was the last time I threw up, and it's now 11:30 Saturday morning. Dave's taken Sam to the park to play. I took a variety of anti-nausea meds in my own made up order and seem to have gotten somewhere, or at maybe it's just that the vomiting part is over, but I'm sitting up for the first time today. So far, Gingerale is not the miracle cure it was when I was pregnant, and the only thing I've kept down is a single popsicle. I've lost five pounds since Thursday.

I just feel so betrayed by my body right now. I guess I should have expected a violent reaction. After all, I tried to poison myself two days ago. But I really thought it wouldn't be this bad. I want to crawl in a hole and stay there until this is over.

Sorry to be depressing, but for now I have to leave it at that.

Winding up

I finally had my appointment with the oncologist on Friday. He brought up the fertility thing, which was a refreshing change from the last oncologist who didn't want to discuss it. I wish I'd seen this guy in the beginning when all of that felt like an option.

It's hard facing the fact that my ovaries are going to take a beating and might not make it. But I've made up my mind that it's not worth the time and the extra procedures right now. I just want to get on with fighting this cancer so I can be here for the kids I have, thanks. And I can't ignore the financial impact.

I never did add up all the costs associated with freezing embryos. (I decided not to proceed before I got to that point). Suffice it to say it was escalating into the thousands, and we weren't sure how much of that my insurance company would cover. It's nothing to sneeze at when you consider that I may not be able to work at the same pace, and in my world, not working at the same pace = not getting paid at the same pace.

That reminds me of the work situation around when Sam was born. See, I decided to just wait and see with Sam. This was my first go-around with a newborn, and I had no idea how either one of us would be. I thought there was a chance that he would be totally laid back and would sleep and gurgle pleasantly all day and I could work for an hour or two during the day and a little more at night when Dave got home, thereby avoiding the hassle (and expense) of daycare.

Ha!

My child is brilliant, wise beyond his tender years, and completely high-maintenance. By the time he was 6 weeks old, it was obvious that daycare was not optional if we wanted to pay our bills. I was freaking out because normal parents do this whole daycare thing the moment they find out they're pregnant! And here I was with a 2 month old baby and I'm thinking, "Gee, I need some help with this!" No way, right?

Well, we got lucky. Or received grace, really, because the universe provides what you need when you need it, even if what you get isn't what you thought you wanted. In this case, what we got was exactly what we thought we wanted - Maria - a lovely, soft-spoken Spanish woman with an in-home daycare 20 minutes from our house who was willing to take Sam two days a week.

My point is that sometimes you don't respond to things the way you think you will. What I learned with Sam is that it's okay to postpone a decision until you're ready to make it, even if your options could be more limited when that time comes. The universe will bring you what you need. If we're ready to welcome another child into our lives once I am healed, then we'll find a way to do that. So, let's get on with it.

Turns out my treatment plan is exactly what the original surgeon and oncologist suggested, but at least now I understand it and I believe my doctors understand it too. (I had the idea the first set of docs were just reading from the playbook. Whether that's true or not, my having that idea was not going to help matters).

Thursday, I start chemo. I have to drive all the way to Largo for my first treatment because the local center has a nurse going on vacation next week. Nothing like getting cancer in August! Dave's going with me and Katherine will pick Sam up from daycare, so the details are handled. I'm worried about it, but it will also be a relief, so on balance, yippee!

So six cycles of chemo, which means I'll be getting my last treatment at the beginning of December, which means I should be feeling better by Christmas! Surgery around the beginning of February, then radiation for six weeks starting in the middle of March.

I was surprised about the radiation thing. You have to go every day, Monday through Friday. I didn't realize it would be that often. The treatment only takes about 5 minutes, but of course, it'll take 90 minutes to drive there, wait, get naked, get treated, get dressed and drive home. That should be super-fun. Maybe with practice (and a lucky draw on the center), I'll get it down to an hour.

Oh, I forgot to mention that, during the first 4 1/2 months (between now and Christmas) I have to go get one of these drugs every week. The other two drugs only go in every three weeks.

So basically, it's going to be hectic.

I've been thinking about things people can do for me, because I'm really bad at letting people do things for me, but I'll definitely need the help. So here are some ideas:

- Spend a weekend (or just an evening, if you're close) at our house keeping Sam busy
- Go grocery shopping for me (I can make a list)
- Bring me food (I'll know more about what I can eat soon)
- Clean my house
- Go with me for chemo
- Organize helpers? lol

Sigh, this is going to suck, but a little overwhelm is kind of my natural state, I guess. I'll get through it, hopefully with grace.

If you feel like helping, let me know what you want to do and let me know when!

Port Report

I had my port put in on Monday. I was terrified. This was my first surgery. Dave kept telling me that I wouldn't remember it, so I was utterly heartbroken when the doctor came in and told me that I would be getting conscious sedation with local anesthesia, which is NOT the same as twilight sedation where they make you so loopy you can't remember what happened.

It's not like I haven't been through this before. After all, I had a biopsy under local anesthesia, and I had to work really hard to avert my eyes from the doctor and all the techs in the small room and what on earth are they doing with that turkey baster? Eyes left: turkey baster. Eyes right: ultrasound screen showing turkey baster inside my boob. I couldn't win.

Still, the biopsy was different. I didn't have time to get worried about it. In fact, I was more worried about not knowing the results of the biopsy than actually having it done. The port implant was different. Intellectually, I knew it was necessary and that I would be grateful to have the damn thing in there, but emotionally, I wasn't so sure.

As the nurse walked me into the procedure room and got me situated on the table, I had visions of that movie Awake, which I haven't seen, but can vividly imagine. That's the one where the guy wakes up in the middle of surgery and can feel everything, but can't say anything. I thought, "I'm way too conscious for this."

They hooked me up to a blood pressure cuff and some goopy stuff like in The Matrix and some electrodes and a heart monitor. I could hear my heart beating on a machine across the room. One of the nurses cleaned the right side of my chest and neck with some runny stuff that, I found out later, painted me orange. Mercifully, another nurse wrapped my entire body, including my face, with blankets and plastic sheeting. I thought I might not be able to breathe and briefly considered having a panic attack, but I was fine. From within my warm cocoon, I heard someone say, "Okay, honey, I'm going to give you some medicine that may make you feel a little sleepy."

Aah, finally. The good stuff. From that point forward, I really didn't care. I want to emphasize that. I really. didn't. care. That concept is utterly foreign to me. I always care, usually more than I should. I didn't care when the doctor jabbed me with lidocaine (which did sting, by the way), or when I felt him pushing the catheter through my jugular vein and into my heart. I didn't care when he was digging around in my chest, making a pocket for the port. I didn't even care when he was sewing me up. I didn't care that I didn't care. Now I care. Now it's creeping me the hell out, but back then I was right as rain.

So the thing is, people told me this was going to hurt like a bitch. And when I say people, I'm talking about my friend Brian, who is also a cancer patient, plus a couple of breast cancer boards where people said "My port still hurts after two weeks! Is this normal?" But it really hardly hurt at all. The dressing, which was creeping up my neck and pulling on my skin, was worse than the pain at the incision site. So there's that.

This Friday, oncologist, then chemo hopefully starts next week.

Waiting

It's Saturday morning, and I'm waiting for my designer to show up online. We need to get a couple of projects squared away before my surgery on Monday.

Yeah, surgery. Waiting on that too. Waiting and thinking about how I never called Maureen back, which wasn't cool, but I'm sure she understands.

I'm grateful for Andrew, who in the end blew off one of his clients to come see me before he went out of town. I'm grateful for Bette who sent me a pretty wall hanging with the word "Faith" painted on it. I'm grateful for my clients, who are being so cool about things, and for my friends who are checking up on me and helping me to be brave.

It's Saturday morning, and Dave took Sam outside so I could do a little work. Dave rocks.

On Monday, my sister Katherine is coming to stay with me for a couple days. I wonder how I'll do with the whole mediport thing. I try not to think about it too much.

People ask me how I am, and I say, "Physically I'm fine. Emotionally, it's pretty rough." I keep hoping that the emotional stuff will get easier just as the physical stuff gets harder, but deep down I know they are intertwined and there's a lot of emotional stuff left to deal with - losing my hair, losing a breast, having reconstruction. Still, I believe that doing something will feel better than doing nothing, as awful as doing something might otherwise be.

My designer is late. Still waiting...

Mediport

Time to get the mediport!

A mediport is a valve that's inserted under the skin and connects to a major vein in the chest. They can use it to draw blood or to inject medicine, e.g. chemo. It can stay in forever if you need it and prevents my one meager vein from getting traumatized again and again and again for the next year or so.

I've heard the implant procedure hurts like a bitch.

I guess this is my very first surgery. It's kind of amazing that I've gotten to 33 years old without ever having surgery. I'm a little freaked, but I'm considering it a trial run for all the other surgeries I'm going to need. :)

Yesterday was tough. These changes in direction hit me hard and require mental adjustment. Luckily the "thrown for a loop" intervals get shorter and shorter the more it happens. I'm in good spirits today.

Square One*

Well, we're kind of back at square one. Remember pre-operational chemo? Yeah, that's square one.

It's not the old doctors' fault. Not entirely. It's just that they didn't have enough information to really make this call. When the information came in, it appeared that they were right all along, but not for the reasons they gave me, which doesn't mean you're un-fired, old doctors. It just means you were lucky.

The breast MRI gave us some new information. So now we're back to chemo, then mastectomy, then (possibly) radiation, more chemo and hormone therapy. And reconstruction fits in somehow. Plan A, as it were. And that's okay, because everything's full speed ahead until it isn't, and because it's better to do it right than to do it right now, and because now I understand why. Can we start now?

One more doctor to see, hopefully this week, then the port (oh yeah, that again?) then hopefully we're through with the false starts and chasing around and we can finally start fighting this thing.

* Composed to the sweet sound of my pre-schooler singing "na-na-na-na BAT MAN!"

Upswing

In addition to making appointments with new doctors yesterday, I also got the following test results:

Brain MRI - normal (apart from enormous brain! Super-genius, you know)
Breast MRI - no evidence of malignancy in right breast (yay!) and axillary lymph nodes on left side (under arm) are NOT enlarged

Of course, I'm anxious to get going, but it's nice to get some good news for a change!

Getting my strength back

I haven't been able to work for days.

I get up, I pack Sam's lunch, I take him to daycare.
I come home, chat with my designer for a bit, and answer a few emails.
I sprawl out on the couch, tune to Investigation Discovery, and pop up every 20 minutes for another snack.

By about 2 pm, I'm feeling restless, so I go out for a walk.
As I'm walking, I feel as though I'm running away from something.

Today, I finally reached my primary care doctor, who conferred with Dave's primary care doctor and came up with a new surgeon and a new oncologist for me to see. I scheduled appointments. And now the waiting starts all over again.

There's absolutely nothing for me to do the rest of this week. Now I just need to see if I can get my head together enough to do a little work.

Turbulence

If you want to make me cry, talk about babies.

The predominant emotion I'm feeling right now is bewilderment tempered with exhaustion. The best metaphor I can think of is what happens when they land a fighter jet on the deck of an aircraft carrier.

Did you know there isn't actually enough room to land an airplane on an aircraft carrier? They manage it with old-fashioned brute force. The plane is equipped with a hook that comes down at landing time. The pilot has to position the plane so that the hook catches on a metal cable stretched across the deck of the aircraft carrier. This hook and cable system is what stops the plane from falling off the end of the deck and crashing into the ocean.

The most fascinating thing about this system is that, at the instant the pilot touches down, he also hits the throttle full-force. That's because, if he misses the hook, he needs every bit of power to successfully take off again. If he waits until he knows he's missed the cable, he'll crash. So the cable has to work against, not only his velocity as he glides in for a landing, but also the full force of an attempted take-off.

This is exactly how I feel. Everything I'm doing right now is full throttle, until it isn't. And just like the pilot, I'm at the mercy of all these forces: the cable, the hook, the ship, the plane, the thrusters. It's hell on the pilot, and it's hell on the guys on deck who help catch him.

Yesterday morning, I went to see the reproductive endocrinologist. He said, "I think we can freeze some embryos before you start treatment." I saw the nurse and the finance lady. I requested test results to be sent to the fertility place. I made an appointment for an ultrasound this morning. I was ready to go...until the hook caught me.

Yesterday afternoon, I went to see the oncologist. He said it would be a very bad idea to introduce all those hormones when I've got estrogen receptor positive cancer. He frowned when he said it. The breast surgeon said, "It would be best if you left this behind you for now. You are young. There's a good chance your ovaries will come back."

Why don't they ever shut up? Just tell me no, then move on. Because you know the more you talk about it, the more I'm going to cry, right? How can you not know that? So finally I wave my hands in the air and cry out, "Please stop talking about babies now, because you guys are making me cry!" And that was it.

There are more stories from yesterday. I have stories about incompetant surgeons and useless oncologists, but I'll have to leave those for another day. One jerky landing at a time, please.

Fun Day

Fun day with my boys.

Dave, Sam and I left pretty early (does 11 am count as early?) to check out the Clark's Elioak Petting Farm in Ellicott City. It was cute and kitschy - perfect for a 2 year old. They have a lot of the stuff from Enchanted Forest there, so that was kind of fun, or will be for my parents when I show them the pictures.

Sam really liked petting and feeding the goats, donkeys and horses, but mostly he was interested in the chickens, who were somewhat less interested in him. Sam feasted on the chicken nuggets I brought along (could that be why the chickens were skittish?), and then we wandered around the fairy tale stuff.

I asked Sam if he knew the story of Humpty Dumpty and he said "Yes!" I didn't quite believe him because I don't remember ever telling him that story, so I said, "Oh yeah? Tell me!" And he said, "Humpty and the wall and he fell down!" Which was basically the gist, I guess, although I have no idea where he picked that up.

On the way home, we stopped at the grocery story to pick up a few things for Danny's birthday dinner. He requested a curried cranberry chicken dish that we all love. (Sam scarfed down all his chicken, then said, "Woah! Chicken HOT!" before gulping down his lemonade). This was followed by the inevitable birthday cake.

Tomorrow, we're looking forward to going to the pool with Auntie K!

Short 'do

Even though we're still up in the air about what treatment will look like and when it will start, I decided to go ahead and cut my hair short (quite short, for me!). I told my hairdresser that I wanted to "transition to bald gracefully."

Speaking of hairdressers, it's funny to say "my hairdresser," because I bounce around a lot. I'm really, really bad about getting my hair cut. I just don't like to spend the time or the money, so I usually go at least a month too long in between haircuts.

I was walking around Chevy Chase yesterday after I picked up my MRI films and I thought about popping into one of the expensive salons down there to see if they could fit me in. (Probably wouldn't have been tough - they were all empty). I thought, in a twisted way that only I could think it, that if I had to lose my hair, I might as well have a really fantastic, really expensive haircut right beforehand.

In the end, I opted for Victoria, who has given me my top three haircuts of all time, and works at In Salon in Aspen Hill near my old house. I like Victoria a lot, but I feel bad about going to see her because I only show up every 4 months and by then she's kind of forgotten who I am and we have to do the whole "how many kids do you have?" thing, and anyway my hair's a rat's nest and she deserves better. But when it came to this I thought, she's the one.

Turns out that was the right choice. "When it starts to come out, if it does," she said, "call me and I'll take the rest off for you. No charge."

So here it is. Tell me it's gorgeous, please:

Oh, but first I'll tell you that it wasn't that traumatic, getting all that hair cut off. We cut it once, decided it was still too long, and then cut it again. I think I look a little like Molly Ringwald in The Breakfast Club. I'll take that, so feel free to repeat it back to me if you like.

Since I'm apparently obsessing over my looks in the post, I'd also like to announce that I'm getting an eye exam on August 6 so I can order new contacts. Because the only thing I can think of that's worse than being bald is being bald and wearing glasses. Yeah, that's silly.

Sad, and happy birthday

First the good news. Today is Danny's birthday. He's 22 today. I can't believe I've been his step-mom for 9 years. It's been so fun to see him grow from a 13 year old kid into a grown man with a girlfriend and a bachelor's degree and a job (or three). He may be headed to Villanova for his master's this fall, but he's still all arms and legs, and he's still my boy.

Feeling a bit overwhelmed today. I had my breast MRI this morning. It wasn't too bad, as MRIs go, but every time I'm presented with a form to shove my breasts through, I think about Mr. Garner, my sixth grade phys. ed. teacher, and how he made me wear the chest protector with the little boobie cups sewn in when I played goalie in our lacrosse unit. So that kind of freaks me out.

The tech told me over and over again that it was very important that I hold still during the test. Well, crikey! I have to hold still for half an hour? Uh, that I can do. When she pulled me out of the MRI, I tried to de-droolify myself as discreetly as possible. The tech was gracious.

Now I'm hanging out in my second Panera Bread of the day. I have to leave in a few minutes to go to acupuncture, where I will be expected to lay on another table for about an hour. Unless Diane learned something new on her retreat last week, there will be no breast forms (thank god).

Later on, I have to go back to the radiology place to pick up my films. I'm going to take the metro this time, because parking in Chevy Chase is a huge pain in the ass. I HATE DC area parking garages. But that's a tirade for another day.

I'm losing yet another whole day to this cancer thing, and it's kind of bumming me out. Work can wait...I can deal with that. It's just that it's another reminder of how much life my has changed in a just a few weeks. I hate that I have to deal with this every single day. I'm looking forward to having the plan worked out so I can get my treatments and go home and do my thing in between, even if I have to feel sick and lose my hair and everything else that goes along with it. I'm pretty sure I'll regret that statement later, but for now, it feels right.

An interesting turn of events

So Dave and I called our oncologist friend Dr. Greg yesterday, and he threw up some red flags. Actually, it'd be more accurate to say that I could hear Greg's mouth hanging open on the other end of the phone. Why chemo first? Why mastectomy? Why three choices for chemo with no recommendation? He had me convinced that the second opinion would not be a mere formality in my case. He gave me the name and number of a breast cancer specialist he knows at George Washington University.

I called Dr. Seigel and left a message for the woman who handles his schedule. Then I called back and asked to speak to Dr. Seigel directly. I didn't think in a million years he'd come to the phone. I figured his nurse would come on and say he was with a patient, and then I'd say I just wanted to call to introduce myself, and I already left a message with the scheduler. I was doing an end run, and I was pretty sure I would get my hand slapped for it, but this is how things are done with a big insurer like Kaiser, so I'm used to it.

To my surprise, I got Dr. Seigel.

I told him that Greg Reaman suggested I call and that I wanted to introduce myself. He asked me a few facts about my case. I don't know if his mouth was hanging open, but he definitely wanted to see me. In fact, he wanted me to bring all my films and meet with one of his colleagues, who is a breast surgeon. In fact, maybe we could work it out so we could all sit down together. He told me he would walk right down and communicate all this to his scheduler, and lo!, this actually happened.

I was impressed. And excited. I have options again.

I realized later on that, when I went to see the Kaiser oncologist on Monday, all I wanted her to do was say "Here's what we're going to do. Let's start this afternoon." But she didn't do that. She wanted me to do the heavy lifting. And what happens when you do heavy lifting? You get muscles. Won't she be thrilled?

I'm seeing Drs. Teal and Seigel on Monday afternoon. Who knows? Maybe once they see the films and examine me they'll say the Kaiser docs were right. And that's fine, because I was resigned to that anyway. But what if they have a better plan? That idea is so exciting, I'm practically holding my breath.

Hard day

Ann is having a hard day today.

My fibromyalgia is leaving my back, only to move to my head. And I got my period. So basically all I want to do is eat and sleep. I'm going through the motions of working, because maybe I can scrounge together a couple bucks worth of productivity.

Dave went to the dentist today, and when he got back, he set about mowing the lawn, so I didn't even realize he was home. (Oh, that was our mower?) I guess we're going to call oncologist-Greg when he comes inside, and then maybe we'll go out and get a snack. Because sooner or later you might as well give up the illusion that you're actually accomplishing something.

I'm been straddling the fence on telling certain people about the cancer thing. In the early days, Dave said "The more people who can support us the better," and I believe that, which is why I posted to facebook and started this blog. But clients...er...not all of them. Not the new ones. Not the ones I think might freak. Not the ones whose projects are late for this very reason. Because that's not who I am.

Being super-marketing-girl is hard work.

Chemo

Chemo starts in 2 weeks.

The oncologist was terribly clinical, but that was mostly okay because people warned me she would be. She doesn't want to make a call, of course. She presented three different possible drug combinations we could use, explained some of the possible long-term side-effects of each (such as heart failure, kidney failure, and liver failure) and then left it to me to decide. "Nothing unusual about this cancer," she said, implying that any one of them would work as well as the others, within certain mathematical tolerances, of course.

When I asked about fertility, she said, "Well, you're looking at 6 or 7 years of treatment, and by then you'll be 40. You already have one child, so you don't really need to worry about it. I mean, I would be more concerned if you didn't have any children." As if having one child is some kind of consolation when faced with the prospect of being unable to have another, even though that's what you've always, always planned. She seem surprised when I started crying.

Oh well. Pick up and move on. "Call your GYN for more guidance on this," she said, which was fine with me because I like by gynecologist a hell of a lot more.

I typed up an email outlining the options and sent it over to Carville (my superstar biochemist cousin) and Katherine (my superstar hospital based psychologist sister) and Dave (my superstar attorney husband with the ex-boss whose husband is an oncologist) and I'll wait for their input.

And there are more tests. Echocardiogram (because one of the drugs I'm definitely getting can cause heart failure) and a bone scan to make sure this ache in my back isn't really a metastasis. Oh, and a quickie procedure to get the mediport inserted so I don't have to suffer bruised arms for the next year. And then chemo.

I'm numb. Let's go.

Waiting...

So I'm kind of bummed out today.

I guess it's because I'm in lag time. The five days between when they took the biopsies and when they came back were hell. But last week, there was a flurry of activity - appointments to make, people to call, things to do. That all stopped Wednesday, and I've been in a holding pattern ever since.

I'm a control freak. And I feel out of control. I need something to do, because when I'm still I swear I can feel the cancer growing. Yeah, that sounds crazy, and it probably is. I just want to get started.

Tomorrow, Brain MRI. (Yep, on a Sunday). Monday, oncologist. Then we can get this party started. (Right?)

What's next?

I've been working on all my big plans for a while now. For example, I've been on this weight loss crusade. After being overweight my whole life, I finally decided to really lose the weight and make it stick. I don't really know what distinctions I made that helped me get here, but once I made them, the weight loss thing got easy and here I am 3 months later and 35 pounds lighter.

I also have this idea for a business - kind of an offshoot of my marketing business - and I got really serious about making that happen. The novel was next on my list.

And then all of this.

I've started to get some answers from my doctors about what will happen, and mercifully this has taken me out of disaster-mode, but about a quarter inch to the left of disaster-mode is crisis-mode, where I am now. I am hyper-focused on whatever is right in front of me. Sunday, Brain MRI. Monday, Oncologist. Get the treatment plan. Send it to Dave's friend the oncologist for review. Send it to my cousin the super-star biochemist for his review. And then?

And then start chemo I guess. Not sure when, but probably soon. Probably next week. Get some scarfs. And then?

Then is where my to-do list ends, because after that I have no clue. I'll go to my treatments, however often they are. I'll keep working because I have to, and frankly, because I want to. I'll write here to keep sane.

I got tagged on a facebook meme, "The Threes of Me." One of the questions is this:

What are the three things you're most looking forward to?

I got stuck on this one. I could only think of one. It was this:

Being alive on my son's third birthday.

A viable goal, to be sure, but one that wasn't on my radar two weeks ago.

So how's Ann?

Ann is 33 years old.
Ann is typing on her laptop in bed.
Ann needs a shower.
Ann has breast cancer.

I never thought (never ever) that I would have breast cancer. You see, I had plans, and this wasn't one of them. Another baby, a couple of new business ideas, and growing old with Dave - I was thinking along those lines.

About a month ago, I noticed blood in my bra. Just a tiny little spot. "That's weird," I thought.

The next day, I thought, "Hmm...that's definitely weird."

The day after that, I thought, "Is that the same spot from yesterday?"

Always tiny, always easy to dismiss. Until one day, when my toddler and I were wrestling and I knew that last tackle hurt more than it should have, and I checked and found a shiny-wet blood stain the size of a nickel in my bra.

Okay, gross. TMI, you say. But I thought I had an infection. That's probably what you would have thought too. But you would have been wrong. Because I have breast cancer.

The next day, I was in my doctor's office. Looking back, I think she knew right away, but mercifully, she didn't let on. Two days after that, I was getting my first mammogram. (Did I mention I'm 33?) Then I had an ultrasound, and it seemed to take an awful long time. I wondered why all of this had to spoil my happy memories of the ultrasound room. The radiologist came in. She wanted to look in real time. That's when I started to think maybe this wasn't an infection after all.

I have a tumor at 10 o'clock. I have nasty, uneven microcalcifications sprinkled all through my breast like jimmies. I have cancer in my lymph node. I'm learning a lot of big and/or funny-sounding words.

Before the biopsies came back, I cried. I cried all the time. I had to run from the room when my husband brought my son home because his little two-year-old face set me off. I cried in the shower, which made me feel dirtier.

Now I know I have cancer. Now I'm immersed in the minutia. Is it estrogen positive? (yes) Is it HER2 positive? (yes) When will I have the mastectomy? (...)

Meeting with the oncologist on Monday. She'll fill in the few remaining blanks. Then I'll know what will happen to me. One thing is already determined.

I'm going to kick this cancer's ass.