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.

Doctor roulette anyone?

My general health and well being isn't the only interesting thing that's been going on lately. The kids also seem to provide an endless source of amusement. In the last three weeks we’ve visited the ER twice and been to the doctor’s office an additional 5 times. This is all above and beyond the normal expected pre-chemo visits that I go in for. The fun and joy is that each time that you go to the ER or have to go to the doctor’s office on short notice you end up explaining things to people who don’t have any history with you.

Katarina has been to the doctor three times for an ear infection that just won’t go away. This last time she was finally prescribed a stronger antibiotic and she is feeling much better. Next time I’m going to insist on the stronger dose at the start.

Sebastian, aka monkey boy, fell off his chair and the resulting profusive bleeding of the head wound prompted an ER visit where they superglued his hair like a twist-tie to close the wound. Then he got an ear infection. We opted NOT to take him to the doctor when he subsequently got a fever of 102 and then broke out in a rash. Good thing we didn’t waste another trip (and another co-pay) because we found out the next Monday roseola was going around at the daycare. He’s also much better now.

Then on Friday I volunteered to pull weeds for my company’s volunteer day. Aside from getting smacked in the face several times (once by myself) I came home and my left leg was significantly swollen. Since it hadn’t resolved itself by the next morning (which happened to be one of the first nice and sunny Saturday’s this year) I called the on-call doctor. She insisted that I take the precaution and go to the ER for an ultrasound to make sure it wasn’t a blood clot. I was very sad to spend the morning in the windowless room for two hours until the ultrasound tech was able to confirm that I did not have a clot. But that left the question of what was going on. Now that could be for many reasons including the most likely which is that I have Lymphedema. This is a condition where the lymph nodes aren’t able to can’t get rid of extra fluid (if you wiki it, I’m giving you fair warning there are some gross pictures). This can easily happen given the fact that I am only 10 weeks post surgery where I had 16 lymph nodes removed, it is a known possible side effect of chemo treatment, I have a sore throat that is transforming into a cough which also taxes the lymph system, and I have a general reduced ability to fight infections. So really, I shouldn’t be worried. But alas, I had also noticed a lump and the ultrasound tech checked it out. Looks like there are some lymph nodes that appeared to be large (i.e. 1.8 cm and 1.4 cm). Again, this could totally relate to the fact that I’m kind of sick right now with some pesky cold/cough thing. However, I am a little more active in managing my health and correlated this finding to my PET scan that had some slightly hypermetabolic ill-defined soft tissue that was classified as likely post-operative but that should be monitored to make sure it’s not a lymph node. For high clarity: There’s some tiny chance that these lymph nodes were large (and growing) because they were cancerous. So, when Monday rolled around and my leg was still swollen I called the doctor’s office again. They scheduled me for an appointment on Tuesday morning with the Physician’s Assistant. She was awesome, but in an effort to be conservative, wanted to confer with my oncologist on the most appropriate course of action. I was probably secretly hoping for her to dismiss my concerns as overzealous. But alas, they took me seriously. Today she called back to tell me that during my regularly scheduled appointment on Friday they will stick a big needle in me to try and extract some cells from the lymph nodes for analysis. The results of that lab-work will likely take a week, so until then I can keep biting my nails and stress eating. Need I mention that I downed a ½ a bag of tortilla chips, a can of Pringles, and a ½ a can of nuts today? Delicious and maybe the salt will help bring back the swelling, because by now that’s completely resolved itself and the only proof is a picture I took with my cell phone. But since you’re my friend’s I’ll spare you the visual!

sorry you have cancer - can you fill out this form?

There are lots of things that can keep you busy when you have cancer. Granted, going through 6 cycles of chemotherapy followed by 6 weeks of daily radiation isn't really how I planned to spend my summer and fall of 2010. On the other hand it's pouring rain in Seattle and that's not how I envisioned summer either. Yet there are some small joys in life, like calling the insurance company that authorizes medical disability. I am given the privilege of calling them every few weeks to tell them that I am still being treated for cancer, I am still going through chemo, and I am still going to need time off work. Appropriately sympathetic they give me the same answer each time: "We are waiting for your doctor to confirm your treatment and fax back authorization; I will make a note of all your cycles; good luck, you'll be fine". I wonder how the call center or claims adjudicator at an insurance company knows that I'll be fine, or if it's just written somewhere in their script. Not even my doctor will tell me that I'll be fine more than some statistical probability; so how would someone who's never met me (and whose qualifications I seriously doubt) be able to tell that from a 5 minute phone call? But these calls do warm my heart because it reminds me that they are pushing paper, filling out forms, routing requests and just making the whole insurance and medical process endlessly expensive, time-consuming, and “well controlled”. The other upside is that they are providing jobs for so many people who otherwise wouldn't know what to do with themselves.

So let me familiarize you with the joyous process of getting some well earned disability benefits. I call my insurance company from the hospital to tell them that I am “in for treatment”. About two weeks later, I get a letter in telling me that my claim is in review and that the insurance company is just waiting for my doctor's authorization. A week goes by. I get nasty email messages from my company telling me that I am out of compliance with my time reporting and that my inattention to such important matters will be escalated to the highest executives within the firm. Apparently we take time reporting very seriously (it is an accounting firm after all) and if I miss the cut-off by a second I get at least two email messages. One comes automatically from the system. This one isn't so bad because you can't really blame a computer for not having a brain, sympathy, or concept of extenuating circumstances. The second one comes the next morning from someone who sits in India. He or she runs a report to show everyone who has not submitted their time report for the previous week. They then send a "personalized" email, which doesn't seem very personal at all even though it says things like "it is critical we have all time reported and your compliance is appreciated". I don't mind these insomuch as I totally understand that most people really are just forgetting to submit time reports and need to be sternly reminded. I am however incapable of complying. For the time that I am off on medical disability our national office leaves team has to process the hours in our system. As such, I can't submit my time as work or vacation time. Both would screw something else up down the road. Maybe I should try it and see if something seriously explodes, but chances are that instead I would end up just loosing vacation days because our disability team would somehow be impeded from processing things properly. At this point I call my insurance company again. More of the same. Then they call me and leave me cryptic messages like: “We need some information from you”. No, they don’t specify what information they want or need. Nor do they provide a direct phone number. It’s back to the main menu and to a generic call-center person who will type some notes and forward things on to the case manager. Are you really surprised? About a month after my chemo treatment things start to sort themselves out. Apparently stars align and my doctor’s office has stopped seeing patients, performing surgery, and saving lives long enough to push the right forms back to the insurance company and I get another letter in the mail telling me that I am actually approved for disability. My insurance company then happily marks my case “closed”. In their world once you go back to work you’re “better”. Sweet – if only they could make it so! But alas, by this time I will have already called and started the whole process for the subsequent round. I find it gives me purpose on those days when I really wanted something to do, but didn’t feel like cleaning toilets!

generosity is endless

I have to say that I am very glad that I am 1/2 way through my chemo. I know it just seems like I started this whole thing just a few days ago. I guess time flies when you're having fun. Or maybe it just seems to go faster when you're drugged up every few weeks.

But I somewhat digress. This post is/was supposed to not be a nonchalant recounting of my week. It's really supposed to be about all the support that's crawled out of the woodwork. I didn't know how much I could count on my friends. At some level I was still having a hard time believing that we had really settled into Seattle. I always felt like it was just a temporary thing and that I didn't want to get too attached as we would be moving "soon". Well, the "soon" turned into seven years. That's a long time, so it's not surprising that a great set of friendships have developed in that time - whether I was expecting them to or not. I just fell in with some great people. There are many acts of generosity that keep taking me by surprise. My beauty school gals (from the blog post "posse goes to beauty school") arranged dinners while I was in for surgery. Another friend brought over sundries of items from Trader Joe's to stock my freezer and one of my Phi Chapter Chi O sisters sent a delicious meal from Omaha steaks. I was sent homemade biscotti from Minnesota and I have received many touching and funny cards and emails from unexpected sources and flowers from people whose thoughtfulness has taken me by surprise. I received gifts of clothing (from Alyssa the leopard print top and yoga pants already displayed on the last post) and from another friend (code name LNK) a very hot biohazard t-shirt (see right)! My sorority sister advisory group banded together to plan meals for the weeks I am going to be in the hospital for chemo. Another friend is riding in a cancer bike event in my honor. People have changed their schedules to make sure they can "take me for a walk" (yes kind of like how you need to take the dog out for a walk!) When people found out I would loose my hair they eagerly offered to chop theirs as well. Todd did it right away, which wasn't a big change for him since he already kept it at about 1/4 inch. But another friend (DWW pictured right) has gone through with it and I think the look suits him wonderfully.

So I have also learned that as tough as I try to be I am deeply touched by all the outpouring of support that many people have displayed in a variety of ways. I like to make fun of situations and use humor to keep this whole thing in perspective. But, as I sit here to the calm clicking and humming of the medical devices I don't feel alone. I am surrounded by wonderful people and I appreciate each and every person that has come into my life and willingly shared their perspectives, personal struggles with cancer, generosity, or just let me be completely random with my emotions. You're all exactly what I need.