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.

Atlas Shrugged - aka the weight of the world

In "the good ol' days" people were likely to lose a lot of weight during chemotherapy because of the nausea that is involved. However, modern medicine has cured that problem and now, thanks to anti-nausea medicine and lack of energy, some people can even look forward to gaining weight. Can you say "that's just not fair!?"

Most people who know me well have heard me fret about my weight at one point or another. Shockingly, I wasn't svelte when I was younger. In fact, some kindly referred to it as "babyfat" and others unkindly referred to it as "thunder-thighs". I inherited my father's weak spot for ice cream, chocolate and I are on a first name basis, and coffee really is better when it has a big fat dollop of real cream and sugar.

This new adventure over the past three months is just a roller-coaster of a ride on the scale. Lose 13 lbs. Promptly gain it it back. Rinse. Repeat. Overall the downward trend leaves me optimistic that I will be able to fit back into my jeans that I had before I got married and "b.c." (before children). And my friend said, the only thing worse than having cancer is having cancer and a fat ass.


Well woman exam: $40 copay
Biopsy: $40 copay
Hysterectomy: $100 copay
Chemotherapy: $600 copay
Radiation: $40 copay
Wigs: $250 copay
Being skinny: Priceless
For everything else there's insurance!

follow the yellow brick road (and blog postings via email)

The familiar "duh ding duh ding" of skype called me out of a benadryl induced coma. My mom was calling me. Of course I had to answer as it was sure to be important. I guessed right, she wanted to know how to sign up and follow my blog - but not just to "follow it" she wanted email delivered to her inbox. I hadn't given it much though even though I love that I have a bunch of followers. I had tinkered with things a bit last week to try and see if it would email, but hadn't gone so far as to try and figure anything out. So tonight with a bit of time on my hands and some additional prodding from Alyssa I think I've figured out how you can sign up to get email. It's a test feature at this point, but presumably it will work for those who want to get a little email in their inbox as I post changes. I am testing it tonight with my own yahoo account and we'll see what happens. Cross your fingers for good computer luck tonight.

#2 is upon us, er, me...

I am sitting in the hospital. No, I don't want you to feel sorry for me 'cause right now I'm laughing. In my day job I deal with processes and preventing risk all the time. So here I am, sitting in the hospital and am just laughing at how screwy their risk management processes are. Every time I come in they ask certain questions such as whether or not I wear glasses or contacts (I don't), whether I have allergies (none related to medical stuff), and my address and insurance information (which hasn't changed in many many years). They caution me to not get up and walk the 3 feet to the bathroom if I'm dizzy without help so that I won't fall (and presumably sue them?) So, isn't it surprising that for cycle #1 when I checked in to the hospital they didn't have any idea why I was there? They had record of me checking in, but just had no idea what to do with me. And this time the orders were "submitted" but not "electronically signed", so they couldn't be processed. And to top it off my nurse just came in and asked me what kind of treatment I was supposed to be getting. Her: "You got the the 24 hours of taxol last time, not the three hour dose, right?" Me: "Yeah, uhm, why?" Her: "That's what I thought. But don't worry, I'll fix it." Me, too shocked to say the obvious: "WHAT????" My nurse is great. She's the one that's paying attention here and triple checking things to make sure they're right. I guess she's the last preventive control before stuff gets dripped into my veins, so I'd better trust her.

What? Cycle 2 is next week?

I have been feeling so energetic the past two weeks. Today's energy was spurred by a 3 mile run and a cup of coffffffeeeeee. I feel so good that I am actually anxiously awaiting my next chemo cycle. That may seem obsessive, but I'm very goal oriented. Ya know: "1 down, 5 to go... Let's get this show on the road so I can get back to my real life." So no, I am not worried that it's going to be worse than the last round because that would "not be fun". With the last cycle (April 19th) I was in the hospital at 9 am Monday through Wednesday 10 am. The rest of the week I sat around on the couch and played video games. Being a bump on a log is not something I do often or well - I know it's shocking to have found my weak point. I'm not saying that I am looking forward to how it will make me feel, as it was overall a somewhat crappy experience. I didn't have any energy, I am still way slower and much worn out than before, and I have occasional tingling in my hands and feet, and I felt vaguely nauseated for a week. Sort of your run-of-the-mill symptoms I suppose. Nonetheless next Monday will be another important milestone in the process and even though I'll be tethered to bags of poison, it feels a bit more "active".

For those who want to know, I am scheduled for hospital check-in at 9 am every three weeks on a Monday. Since the hospital provides free internet you'll also be able to email and/or skype (shellssc) me!

4/19 - check, done, complete, conquered, achieved, mastered
5/10
5/31
6/21
7/12
8/2 (last treatment of chemo!!!)
Radiation would likely start somewhere around 8/23 and be daily for 5-6 wks (haven't met the radiologist doctor yet)