still surreal

I don't know to whom I should attribute the quote that the days are long, but the years are short. It seems hard to believe that summer is almost over (which you can tell by the crappy weather we've had today) and that I am done with chemotherapy. I put a lot of things on hold mentally and emotionally. Part of me is starting to process that now. Yet I still have so much to look forward to. You know, I have to subject myself to the next part of the scientific experiments that will grant me superpowers. So, I had my meeting with my radiation oncologist last week and today I had a planning CAT scan - yippee, more radiation. I was poked in ways that I won't describe and tattooed with four little "jailhouse tattoos". That's where they put ink on your skin and then jab you with a needle. You can't imagine the fun, and unfortunately they refused to make any interesting designs. Just your basic dots. Then they used the CAT scan to line me up so they would have a roadmap of where my lymph nodes and stuff are for my daily radiation treatments. Next Wednesday I go in for a "dry run". They will put me in the machine and instead of radiating me with radiation I will be getting an Xray. Then the doctor will make sure things are perfectly lined up and starting Thursday (August 26th) I get daily doses of radiation. My last treatment is scheduled for October 5th. I know time will eventually move along, but at the same time it is so odd what becomes a "new normal" .

As an example, appointments are scheduled at the same time every day and some people have 60 or more treatments. Sitting in the waiting room I was able to watch quite a few these souls and their interactions. Lots of them had developed weird relationships with other patients and the medical staff. For one woman today was her last day. The receptionist was congratulating her on "graduating" and more than one person made the comment "you won't know what to do with your afternoons now that this is over". Her response was "I can think of a lot of things I'd rather be doing." She didn't want to be there and I just wanted to scream "I don't belong here either!" I don't want to be one of these people who comes in day after day chatting it up with my new "friends". I'm sure most of them are lovely people, but I have allowed myself to be sane because I've refused to admit that I'm sick. I don't know if I'm just having a little emotional roadblock brought on by the anticipation of the next phase, or if I'm just overly stressed this week. Pile on top of that the fact that I am disappointed that today was one of those days where I didn't get to see the kids at all. I was on a conference call hiding in my basement before they got up and by the time I was done, they were gone. I then had a dinner meeting that went until 10 pm and of course they were asleep before I got home. Remember the post about balancing things? Yeah, that was this week. Posting about it didn't seem to make it all better. Since it's late I'm going to sleep on it and see if that makes things better.

more insurance woes... aka I don't know how to do it all...

I am now "officially back" at work and boy do I love my job. Immediately I got slammed with two large reviews and I have also stepped back into a management role at my favorite client. The gentleman who had taken over for me while I was out for surgery and chemo is moving to Las Vegas, so the natural move is for me to take up the reins. Timing seems perfect and since I love the people there is no client I would rather serve. But I do need to pay attention to balancing things. Although busy hands are happy hands I probably can't be as over-zealous about work as I used to be. I thrive on stress - but right now that's probably not the best idea. So it really puts a lazer-like focus on doing a better job of creating work/life balance. You know, the thing I never seemed to have before the stuff hit the fan. Remember the Thanksgiving that I gave up my vacation time and worked on a proposal while my family was in town? You know, the proposal that we didn't even win. Yeah - those are the choices I didn't like making before, but am trying to avoid like the plague going forward. I will also have another administrative burden to handle: radiation. I went to the radiation oncologist last week to discuss my treatment plan. I will be going back later this week to get a CAT scan so the good Doc can make sure he knows where all my parts are. Then they program the radiation machine. A week or two later I get to start my daily infusion of superpower #2. I am presuming that Scotty won't be able to accidentally beam me up since they will be using a precise pattern focusing on the surgery site and lymph nodes. I don't have the exact schedule yet, but it is likely to start the last week of August. As for the logistics, it will be daily treatment making it a large time commitment.


So I decided to call my company's leaves and disability team. The sad news is that they will only cover disability if I'm out the whole day. It's an all-or-nothing deal. So, I could (easily) get approved to be out of work full-time for the 6 weeks of radiation or have a few hours eaten up by radiation and on top of that put in my 8-10 hour day... hmmm, neither one sounds like a fun way to spend most of September and October. The creative option is to work my butt off for 3-4 days a week and then have them write me out for 1-2 days of disability so I can recover and take it easy. My company and management have been wonderfully supportive, so I have no qualms about any of this actually being a problem. It's just another thing that I didn't think I would ever have to worry about.

biohazard spill on 11 SouthWest

Just about every chemo treatment something exciting happens. I fondly remember the first time where I showed up and my orders hadn't been submitted. Then there was the time that they were flat out wrong and they wanted to give me the wrong dosing of the drugs. Other visits included orders that weren't signed, but this time things were so exciting that I got a "code orange". Codes are interesting. They are used so that patients don't freak out over what's happening. You wouldn't want to hear "biohazard spill" or "uh-oh someone flat-lined" in the room next door. Code Orange at my hospital is a bio-hazard spill. In this case it was my precious taxol. How it came about is an error in training people on new processes. Over this past weekend the hospital changed the connection tubing on some drug bags. When my favorite nurse opened the bag to plug in my IV line it spilled some. They had trained her to open the bag a certain way, which she had done - but the training was wrong. I didn't freak out, but by this time I had already been subjected to numerous "you won't care what I do to you" drugs including the 25 mg of benadryl, some aloxi, decadron, and various others that are delivered right to the heart. So I grinned like a drunk fool and tried to take some pictures of the cleanup. (I know they're blurry, like I said, I was drugged!) Overall the damage was minimal. The spill was small enough that they didn't need to mix any more chemo, so that was fortunate.

The interesting and/or perturbing thing is that this hospital is one of the best in the nation. That means I am getting a pretty high standard of care even with the inconsistencies and silly issues. I trust my doctors and nurses (at least most of them) and am very glad that I am in this facility. However, reinforces the need to question them and keep them (and me) on our collective toes about the treatment they are prescribing and I am receiving.

So here I am at the culmination of my chemo treatment 8 hours away from being done with taxol and cisplatain. Then in about a week I meet with my radiation oncologist to discuss the next phase of treatment. I have already read horror stories on the internet about some radiation treatments that have gone awry and so I have a small list of questions for my radiation oncologist next week. If there's anyone out there who has experiences or advice to share about the radiation leg of the journey please feel free to let me know.

so close, yet so far

A week has passed since my penultimate cycle of Chemo. My 6th and last session will be on August 2nd. Then three or so weeks later I will start the 5-6 weeks of daily radiation treatment. Being this close to the end of chemo makes me feel like the whole regiment of treatment is almost over. That’s certainly how others are treating it. “Yeah! You’re almost done” come the cheers from the supporters. “Yeah!” I think to myself. Yet there’s this nagging unknown of how the radiation is going to affect me. A simple internet search will give you a bunch of horror stories of women who had terrible experiences of burns, fatigue and other nasty side effects. So I am torn between tough Michelle and vulnerable Michelle. Tough Michelle signed up to do a ½ marathon about 10 days after radiation is scheduled to complete. Vulnerable Michelle decided to NOT do the Danskin triathlon in August.

In the book “Crazy Sexy Cancer” one of the women shares how she had felt that being fatigued was “Doing cancer the wrong way” because people had expected her to be strong. Sometimes I feel like that. I’m supposed to be tough, right? Shouldn’t any sign of weakness be eradicated? Since I’m only human and both sides of the coin will show up periodically. I've considered how cool it would be if I had come up with a superhero persona like baldylocks (http://baldylocks.blogspot.com/) or chemobabe (http://www.chemobabe.com/). Then maybe I could more clearly differentiate between the ass-kicking Michelle who ran/jogged/walked 4 miles on Sunday and the beat-down Michelle who crawled back in bed for a nap that same afternoon.

I even feel that maybe I’m not fulfilling my full potential by just sort of casually blogging. I’m getting lots of awesome wonderful supporting messages from people who read my blog, but somehow I feel like I should be doing more. I was warned about this by a friend of mine. She insisted that I not make a bucket list; otherwise when this whole thing is over I would be left feeling like I had to quit my job to go do all the things on my list. So I’m not sure what I should be doing, but in thinking about this I was reminded of a story one of my wonderful sisters tells about me. When I was about 8 or 9 years old I was sent to bed. I clearly didn’t want to go and stomped up the stairs. About ½ way up I turned around, raised my finger into the air and declared: “I will rid the world of injustice”. Cute, right? Can’t you just imagine me with an indignant look on my face, finger raised in admonishment to all the oppression and oppressors everywhere? So, I am not saying that I’m going to quit my job and become some sort of activist (mainly becuase I love my job and I'm good at it), but I am spending a lot more time wondering how to make the world a better place.

Time’s fun when you’re having flies

Or at least that’s what Kermit the Frog used to say. Any number of clichés could describe what it’s like to wait for the next cycle of chemo or the next CAT scan or biopsy result. I actually had a CAT scan Thursday of last week (7/8/2010). Once they got me going it only took 10 minutes. Waiting for the results on the other hand took another 30 hours until my doctor’s appointment on Friday. The results were negative (which is STILL positive). I didn’t have as much anticipation for this scan as I thought I would. It was sort of anticlimactic and I just took it in stride. At that point I thought I had come to terms with my treatment and cancer. I make fun of it. No, I didn't hope to spend age 35-40 wondering if the cancer would come back. And my 40th birthday party will hopefully be one hell of a "completely f-ing cancer-free" bash! I know I technically won't be considered "cured" until closer to my 41st, but I'll take the little victories.

Since the last scan was so “easy” I wanted to know what the future holds today I asked the doctor what the foreseeable scans/tests would be. It looks like I’ll be getting CAT scans (not PET) from here on out. He said the PET scans are best used up front, and after that point CAT scans are what he prefers to use. Todd will probably now launch an investigation into the medical journal Gynecological Oncology (favorite reading these days) to see what’s standard industry practice.

For those into the logistics, my schedule will be somewhat along the following lines. I will get a CAT scan in about 6-8 weeks (end of August/beginning Sept), right before I start radiation. Then I will have 5-6 weeks of radiation therapy and I will get another CAT scan at the end of that (mid-end October). I think I will get CAT scans every 6 months for 5 years with other tests in between.

Then sitting here in the hospital getting infused with round 5 of chemo (see me in comfy shirt and *gasp* no makeup), I tempted fate and asked my doctor the kicker of a question. The one I didn’t really want to ask, but that is always lurking in my mind. I asked him what he thought my chances for cure were given how far treatment has progressed and my most recent CAT scan results. I was sort of surprised that they haven’t changed since the beginning: 85% chance of survival. It makes sense – the chances don’t change much because it’s all based on overall survival etc. We talked a bit more about the incidence of recurrence etc. Todd and I have already speculated a lot about what the point is at which you start to relax a little. Per my doctor (and he IS the expert) about 60-80 percent of the cases of recurrence are in the first two years. The clock officially starts ticking when I’m done with radiation. So October 2012 will be a good time to check back in.

what a post about something other than cancer?

Last Monday (July 5th) Todd and I celebrated 7 years of wedded bliss. This entailed gettin' the heck out of dodge and going to the Bay Area for a few days without the kids. My mom braved Katarina and Sebastian and also two of my 11 year old (adorable, smart, and helpful) nieces. While the cousins enjoyed each other, the science center, duck rides (the boat/car combination; not the animal), and swimming, Todd and I toured some of the Bay Area's more expensive towns. We had sushi in Berkeley, breakfast in Palo Alto, and lunch at In-N-Out. It was a great little getaway and we contemplated things like what we were going to do when Todd finishes his PhD. It was starting to get close; in fact I was sort of hoping that he would graduate May 2010. Then of course I derailed his plan by getting you-know-what. Todd has been a real gem. He banned me from dropping off and picking up the kids from school so I wouldn't pick up random cold/flu/strep. He cooks and cleans and is generally just about perfect. But being perfect at home also limited his ability to focus on writing a masterpiece of a thesis. So the only frustration I would admit to is that I've emotionally been putting things on hold waiting for Todd to finish school and start applying for jobs. I don't actually necessarily like to "do" things, but I like to pretend that I'm going to do them. Sort of like window shopping for life.

In preparation for this day we've *gasp* considered moving someplace else. There are so many benefits to Seattle, but there's something to be said for our other places as well. This weekend afforded us the opportunity to see my sister and really evaluate whether we wanted to move back to California. Being closer to family is a huge consideration. That, and I have been so sick and tired of the rain and gloom in Seattle that I was about to go bonkers. Somehow the gods of sunshine heard me cursing their name because it's been 90 degrees the past two days and today's supposed to be equally sweltering. I don't mind making decisions, but right now I'm feeling like Jack on 30 Rock when he was deciding between Avery and Nancy.

I think the end conclusion is that if we moved to the Bay Area we would want to be in Palo Alto, but since it's one of the top 5 most expensive places to live, we probably can't really afford it until/unless I make partner and/or Todd strikes it rich with a fancy invention.

so, I'm waiting on the edge of my seat for the results!

If you’re like me, you hate not knowing. I really dislike that I will get test results that are hopefully negative (which of course means positive) but that due to sampling errors and granularity of the test you won’t actually know that there isn’t a problem until it’s a big problem. But that is my task for this week. To wait patiently for the results of the FNA. Yes, you read that right. I had an FNA test. Those words actually came from my doctor’s mouth: “I need to get stuff for the FNA”. Now that really meant that he was going to do a “Fine Needle Aspiration”, which is a fancy word for biopsy . So a few minutes later he returns with a big grin and an even bigger needle that he plunged into my leg without any prior numbing - think epi-pin from pulp fiction. If you have no idea why I'm doing this you missed last week's "Doctor Roulette" post regarding the ER visit on Saturday (6/12) and my subsequent visit to the PA (physician's assistant) on Tuesday (6/15) where she looked at my ultrasound results and my PET and CAT scans. By the time I saw my oncologist that Friday he was thoroughly briefed on my medical analysis and random guessing as to what might be going on. He concurred with my conclusion that the lump that could be felt was a lymph node. Todd had not been convinced, but that’s why we went with the majority votes. Isn’t that what they meant by “team of doctors”? I should preface these things by saying that my doctor was not concerned. He was not expecting to find anything, but that's part of the uncertainty, right? Finding nothing doesn't mean there isn't something....

Back to the task on hand - my FNA: So, the poking wasn’t too bad (less painful than a tattoo) and I only gushed a little bit of blood. My doctor smeared it onto some slides and got them sent off to a lab. And here we are three business days later waiting to find out if the enlarged lymph nodes – which could be enlarged for any number of logical reasons – turn out to be cancerous. Still waiting… Still waiting… Still waiting…

So, to take my mind of things I did some actual work – which is totally unauthorized when you’re on short term leave. But I guess it’s not amazing given how much I love my job that I would opt to sift through workpapers on a day when I should just enjoy being drugged up by a cocktail of junk.

P.S. Shortly after finishing this blog my oncologist came to visit me dressed in his fashionable green scrubs. Coming directly from surgery he wanted to share the great news that my FNA was negative (which is positive). So, we get to rest easy until my next CAT scan, which will be in about three weeks.