Such a Great Day

Today started with a surprise:  Diva and I were driving a few blocks from my house and found a young couple enjoying the beautiful fall weather: 

 

We spent about half an hour watching and snapping pictures.  I'm very proud that Diva, at eight years old, has learned to appreciate and respect wildlife.  I will never forget witnessing a dumbass tourist in the Yukon Territory hop out of his car, walk right up to a wild black bear, snap a photo, then turn his back and return to his car.  I was taking video of the bears (zoomed in from a reasonable distance and the safety of our car) and thought sure I would be handing my vacation video over to the authorities after the mauling.  Diva knows that the wildlife is here, in the city, because of all the building going on in the hills.  She knows that wild animals, no matter how calm they appear, can turn on you in an instant, and that they deserve to be left alone.  We sat quietly in the car until they looked our way, then took the pictures.  We never even considered trailing them, feeding them, leaving the car, or trying to get their attention.   Our patience was well rewarded:

 

In case you're wondering, that's an office building in the background, and we were in a parking lot.   The camera I used for these photos is new as of yesterday, and I'm still learning how to use it. So far, I'm impressed with how easy it is to maneuver.  Some of the shots could be more clear, but I was using the zoom feature for the first time, so I expect I'll get better with time.  I'm just grateful to have had a camera with me. 

After our wild encounter, we hit the mall.  We found everything we need to transform the bathroom (on sale, plus the clerk gave us coupons - major score!) had lunch, picked up some school clothes for Diva from Macy's clearance rack, and grabbed Halloween candy for tomorrow, along with a jar of Walker's favorite salt & pepper cashews.  When we got home we carved Diva's jack o' lantern and settled in front of the TV.  Right now, Diva is sacked out in her bedroom, Walker is getting ready for work, and I'm feeling all relaxed and happy.  Life is good.

Girls' Day

Ah, the weekend.....cue the sound of birdies and violins.  It's not here yet but I'm practically counting the hours.  Tonight will be a long one at the office. But: Walker has to work this weekend and tomorrow, I am taking myself SHOPPING. I haven't been out shopping for anything other than groceries in months.  Seriously.  Months.  Unless you count the afternoon I spent looking at shower curtains with Walker, which I definitely do not.  Shopping with Walker shouldn't even be called shopping.  He gets a ginormous  cup of melted milkshake (otherwise known as a latte) and makes a game of how fast he can get out of the store and back to his Laz-E-Boy in front of the TV.  It's kind of pathetic how excited I am that he's working and I can go it alone.

It started with the whole "Walker hates the bathroom" fiasco. The shower still is not fixed.  We don't even have a contractor lined up.  I've called to schedule one, twice, but so far I haven't gotten a call back.  I'm rethinking hiring them now - if I can't get them on the phone to schedule the work, where will they be if I have a problem? 

So while I wait and ponder my options, I decided we need a fresh coat of paint to go with the new shower curtain.  Since we're changing colors I want to look for some bath sheets.  The old ones are getting ratty anyway, plus they are a pukey shade of peach since an unfortunate bleach incident.  Then I realized that I start radiation on Monday.  I have exactly one pair of "good" socks, and I don't intend to traipse around the cancer center in holey ones.  Socks went on the list.  I have a pretty wool sweater with shamrocks on the pockets but nothing to wear under it.  Wool against the skin?  Um, no, thank you, I don't like breaking out in hives. I'll look for a green top.  Halloween is when?  Sunday?  Oops!  Better get some candy.  Et cetera.  By the time I was done I had half a page of errands, so I told myself to call it a shopping trip and make a day of it.  I might even pick up the new Sex in the City movie.  I haven't been to a movie since before my last shopping trip.  I wonder if I can still find the mall.

I'm like to take Diva with me, but I have to wait to see if she has a date with her Daddy. I think they were planning some Halloween excursions if he doesn't have to work.  Either way, it's retail. therapy and maybe even a little lunch out on the town.  Bring on the weekend!

Pink Warriors ~ Fighting Like a Girl

My sister is wearing a pink shirt.

If you knew my sister, well, you'd probably be going, "Awwwwww!" right now. My sister is - ahem - slightly older than me and I can't recall ever, ever seeing her in anything pink. Ever. In fact, a couple years ago Walker and I were on vacation on the Gulf Coast and this surf store had these really cool pink jackets with little embroidered sea shells over the chest pocket and I wanted to pick one up as a thank you to my sister for taking care of our kitties while we were gone. Walker talked me out of it: he could not imagine my sister in pink anything.

But today, my sister is wearing a pink ribbon shirt in support of the cause. Walker has been passing out pink rubber bracelets to everyone we know ~ and they are wearing them, too. Two of my sisters friends violated their dress codes at work to wear pink camo tee shirts in support of a difficult appointment that I had to get through. Even the dogs are now sporting pink collars.  Go, Pink Warriors, go!

Still Going!

I'm nearing the end of my first week back to work.  I don't mind telling you, I am worn out.  I've been sleeping way more than usual, too, but when I'm up and moving around I feel just fine.  I guess my body is still recovering, though I don't feel it outside of needing the extra sleep.

The weather has turned cooler; the last two mornings, when I left work, I had thick frost on my car.  My poor veggie garden, abandoned after my diagnosis, is looking pretty bad.  The area around my house is in a valley, so we don't get frost right away, but I'd better get out there with Diva again this weekend to salvage what we can.  I doubt we'll have another chance before frost turns it into something resembling seaweed.  The gorgeous trees are nearly bare.

Walker is on a new schedule where he works four long shifts, then has four nights off in a row.  He loves it.  I'm still adjusting.  He gets home about the same time I get up each afternoon, and he has off all this weekend.  I hope we can juggle our time well enough to get some things done.  Last weekend, he was up while I was sleeping and vice versa.  We never did finish the housework last weekend.

On Tuesday, I had my last appointment with Dr C before she turns me over to oncology.  Everything was fine, technically, but my blood pressure has been creeping up a few points with each appointment.  Right now, it's still normal, but it's at the top end of normal.  I want to work on that before I see her again in April for my six month check.  She tells me that an increased BP is normal for cancer patients, with all the stress and so on, but I still want to try to bring it down a bit. 

I Think They Missed Me

On Monday, I went back to work after a month on medical leave.  I walked into my workspace to find my peeps had been busy decorating.  Not only that, they were all decked out in pink.  They had decorated my other wall with a collage of Post-Its full of well wishes and prayers for my recovery. 
You get to choose your job, but usually it's the luck of the draw on your coworkers.  I feel like I won the lottery.  Thanks, y'all!

Heigh Ho, Heigh Ho!

I go back to work tomorrow.  Wahoo!  Sitting around the house got old a long time ago.  My job isn't physically demanding, but I do have to watch out for repetitive motion, which can lead to lymph edema.  I had a physical therapy appointment last week, where I learned tricks to prevent lymph edema, and what to watch out for, so I feel as prepared as I can be.  Really, I'm just looking forward to getting back into a routine and having something productive to do with my time.  Lymph edema isn't a big concern for me right now.

I Love Fall...

Radiation Therapy 101

On Wednesday, I had my first appointment with a radiation oncologist.  The appointment consisted of a review of my breast cancer history, as well as an overview of the upcoming radiation treatments.  I've been reading my "How Not to Die of Breast Cancer" book so nothing came as a big surprise.  About the only thing I didn't know was that I would get my first tattoo ~ a tiny dot that will serve as a reference point for the treatments.  A permanent reminder of my experience, as if I could ever forget.

The radiation oncologist was aware of the situation with my insurance, so they are prepared to hold off on my treatment until November first, when they become part of my insurance network.  And after I got the call from the Mayo Clinic business office, informing me that I would have to pay up front for any out of pocket expenses, I went in prepared to fork over the copay for the consultation, but was told that they don't collect payments at the cancer center.  Anything I owe will be added to my monthly clinic bill.  Huh.  Guess they didn't get the memo from Mayo.  Oh, well!

I know this will sound odd, but I kind of enjoy my appointments in the cancer center.  Don't get me wrong ~ I will be perfectly happy when all this is behind me, but everyone at the cancer center is friendly, informative, and encouraging.  If you have to go through cancer treatment, I hope your local facility is as great as mine.

Reprieve

Dr N just called with the results of my latest batch of tests.  All the news was good.  And the final verdict - no chemo!  Wahoo!  I can't even express how relieved I am.  Mostly I'm just grateful that I don't have to go through all that, that I don't have to be sick and I can go back to work.  I'm also grateful to know, for sure, which direction my treatment will be taking.  I still have to wait a couple weeks to start, but it helps tremendously to know what I'm up against. 

Back in the Ring

Last night I went to bed early.  I haven't been sleeping well ~ trouble falling to sleep, bad dreams, waking up a lot.  So after Walker left for work at midnight, I went to bed.  I know for a lot of people midnight isn't early, but we work nights so for me, bedtime at four or five a.m. is my normal.

I woke this morning still tired, but I had a date with Diva.  She's a pretty great kid, always looking for ways to help out.  I have explained to her in kid terms what breast cancer means, and she's been on the lookout for ways to make my life easier.  With Walker working six or seven days a week, fourteen hours a day, and me on restrictions, things are sliding at home. Diva and I set out to remedy some of that.  I picked her up (I drove!) and we went grocery shopping.  Diva pushed the cart and we finished in good time.

Back home, Diva brought in the bags while I put everything away.  Then we headed to my neglected garden for our harvest.  We dug potatoes and peanuts, collected tomatoes and peppers, pulled some weeds, cut down the dead stuff....we did a good job.  Diva had to be home by noon, for visitation with her daddy.  We made our deadline, though I have to say, I hated having to take that kid home.  Spending time with her is one of the best things in my life. 

I didn't do that much this morning - Diva handled most of the physical labor - but I was exhausted.  To be honest, I think the stress of all this is wearing me down more than the physical part at this point.  Walker called to tell me that he was stuck at work for a couple more hours, so I decided to take a nap.  And boy did I sleep.  I didn't hear Walker come home, though I was sleeping in the living room.  When I finally woke it was after five. And I feel like a whole new person.  I've got my fight back.

I don't know what's going to happen in the next couple weeks, but then, who does?  You might think you have it all figured out but unless you have a crystal ball stashed away, you just can't. So I'm going to do what I have always done: take it one day, even one hour at a time.  Learn as much as I can about each phase of my treatments, whatever they end up being.  Appreciate the good days, spend time with my family and friends, and most of all, trust myself and my decisions.  I've gotten myself this far, and I'll get myself through cancer.

Two Steps Forward, Two Steps Back

Yesterday, I decided to find out exactly what kind of financial headache I was in for with my upcoming radiation treatment.   I have contact information for a very friendly, helpful guy in the financial services area at Mayo Clinic, so I gave him a call.  I explained the situation with my insurance company, and I told him that I need to know as accurately as possible what my charges would be for each phase of the radiation treatment, so I could figure out what the insurance would pay and what my responsibilities would be.  I told him that I want to make sure I can pay my bills in full when they start coming.  I told him about the mess from my first time at Mayo and explained that I wanted to make sure neither of us went through that again.

As usual, this dude was very helpful, but he wasn't able to give me all the numbers right away.  He told me that I need to get a detailed treatment plan, which I should receive at my consultation on Wednesday.  When I have that he will be able to give me an itemized list of the expected charges.  Then he gave me the best news I've had all week: as of November 1, Mayo Clinic will be an in-network provider for my insurance group.  That change will come about a week later that ideal, but I'm willing to wait it out.  It's only a week.  We made an appointment to reconnect by phone on Monday, when we'll call the insurance company together to see if there is anything we can do to bridge that gap in coverage. Things were definitely looking up.

Today, however, I got a call from the business office at Mayo.  They initially called to update my insurance information, but then, they dropped the biggest financial bomb yet in this nightmare: oh by the way, because I took financial assistance on that one previous occasion, I am now required to prepay any and all charges that the insurance isn't likely to cover.  That includes the deductible, copay, non-covered charges, and any amounts above the "reasonable and customary" amounts allowed by my insurance.  Of course, they don't have any idea how much that will be, but I have to provide full payment before I receive each phase of treatment.

What the hell? 

Over the years I've had clinic and hospital bills that I've paid in full right away, and some that  I paid over a period of months.  It's never been a problem.  I've never had delinquent credit cards, never been late on a mortgage payment, never had any sort of credit problem.  I took the financial assistance from Mayo only because they decided, a few months in, that the payment agreement I made (and was current on) wasn't good enough.  They started calling and harassing me for more money, threatened to report me to collections, all kinds of unpleasantness.  Considering that we had a written agreement that I was keeping my end of, I probably could have fought back, but I was overwhelmed by the idea of hiring an attorney, and of course I didn't have the financial resources for that.  When Mayo offered me an out, I took it.  I guess that was a mistake.

Then again, maybe not.  Had I not taken the financial assistance I would still be paying on that bill.  I would probably be in the same boat, or worse, if that were the case. It's possible that I would have turned down the mammogram that detected this cancer, for fear of running up yet another clinic bill. 

I'm not sure where I go from here.  I'm planning share this news with the helpful guy I'm scheduled to call on Monday, to see if he has any ideas.  At my consult on Wednesday, I'm going to tell them that I absolutely can't have any further appointments scheduled before November 1, when in-network benefits will apply.  I'm still waiting to see if I need chemo.  If I don't, prepayment may be a non issue as I'll be able to finish my radiation therapy in 2010.  I've already met my out of pocket maximum for this year, so there should be no additional charges after November 1st.  I did call Dr N to see of the results of the 21 point test are back, but they are not.  Until I get those results, and learn whether or not I'll be taking chemo, I'm stuck in limbo.

When Good Appliances Go Bad

Apparently, the water heater was jealous of all the attention that the shower has been getting.  Last night, I went downstairs to find this:

Yep, looks like somebody's trying to get my attention.   Walker has been tasked with finding a plumber to replace this beast when he gets home from work today.  Just to make sure the other mechanicals stay happy, I scheduled a maintenance check for the furnace, too.  I think I'll just stay in bed tomorrow.

Hanging in There, Sort Of

Today the first bathroom contractor stopped by to give us an estimate for fixing the shower.  A few years ago, we had the same company install the same system into the house we lived in at that time.  The cost was about $2,200, which seemed like a lot of money at the time but they did great work, the bathroom looked beautiful, and they were very professional from start to finish.  I was looking forward to having them fix my shower.

Well, times have changed.  The same system this time around started at over $5,100.  Yikes! There was a discount for this and a discount for that but the total estimate was still over $4,000, well above what I was willing to shell out, the current medical situation not withstanding.  And that price expires at the end of October. So I came up with my own low cost, low tech solution.  I know it won't last long, but at three bucks a roll for duct tape, I can replace it as often as I need to until I get my buns back to work.  Even then I'll take a pass on the five thousand dollar shower system.  That's just out of line. 

As an aside: Walker and I are not married, and the house we live in was purchased by me.  For some reason, when we have contractors in, they want to speak to Walker.  I call for the appointment, I greet them at the door, I sign the contracts, and I pay the bill.  Yet when they're writing estimates and doing the work, they want to deal with Walker.  I understand as well as he does the work that needs to be done, the materials used, et cetera. I'm not just the girly girl waiting for the workers to leave so I can decorate.  Whether they like it or not I butt in when I have questions or concerns.  Frankly, it seems to piss them off.  I don't care.  When I am paying for their services, I am the boss.  The salesman here today didn't push me aside but then, Walker wasn't home.  When they called yesterday to confirm the appointment, the man I spoke with asked twice if I was the sole homeowner.  When I confirmed, twice, that I was, he flat out asked me if I had a husband.  I almost canceled on the spot.  Women may have come a long way, Baby, but someone forgot to tell that to the contractors of America.

Anyway, after the shower guy left, I called my insurance company.  There are no radiation oncologists in my insurance network within at least 75 miles of my home.  To see the radiation oncologist at my regular clinic, I needed to get a "gap extension" to be billed at in-network rates. After many department transfers and much frustration I received the bottom line: my policy does not allow gap extensions, and I will be responsible for any non-covered charges plus ten percent of all fees plus anything priced above what my insurance company deems "reasonable and customary" for each service.  I need a consultation plus a care plan plus thirty treatments.  Even at ten percent, those charges will add up fast.  That is in addition to the out of pocket charges I have already incurred for 2010.  There is no maximum limit for out of network charges.

This whole situation is compounded by the fact that in 2008, I went out of network to Mayo Clinic for treatment of a uterine fibroid.  Mayo offered treatment options not available locally.  At that time I had a different insurance company that did approve my visit to Mayo; however, when the bill came the insurance denied the claim.  After a lot of appeals and other BS, I ended up stuck with about 90% of that bill.  I worked a deal with Mayo where they discounted the charges and I paid it in full, but one of the terms of the deal was that I was not eligible for further financial assistance from Mayo, ever.  I figured, okay, they're not local, I have two options in town,  I won't need to go back there again.  Little did I know.  The radiation oncologist I have been referred to works in my town, but he's employed by Mayo Clinic.  Mayo leases space in my local clinic and runs it as a satellite of their facility in Minnesota. 

 I really want to keep my attitude positive as I continue on this journey but it seems every day gets more difficult.  I could really use some good news about now.

Some Days are a Total Waste of Makeup

Nothing went right today.  First, I called the clinic to confirm my appointment with the radiation oncologist. When I made the appointment I learned that there are no radiation oncologists in my insurance network in a 100 mile radius of my city, but I could request permission to go "out of network" to see the doctor at my regular clinic. I still don't understand why that doctor doesn't join the network, but regardless: the insurance company had not yet responded to the request for permission, so my appointment had to be rescheduled for next week.

Next up was the shower. Nothing scary there, right? Yeah, I thought so, too. Until a tile fell off the wall. The wall behind it was mush. Apparently, the grout has been damaged for a while and the drywall behind it was soaking up the shower water like a sponge. There's no easy fix for that. We have to take off all the old tile, replace the drywall with cement board, and put up a new surround. I've been wanting to do something about the ugly faded terracotta tile but the alternatives were cost prohibitive. Right now is not the best time to be raiding the savings account, either. But it's our only shower, so there really is no choice.

Since my mood was pretty much shot, after my shower I put on a fresh pair of jammies (at 1 in the afternoon) and called the bath tub repair places in the area to schedule estimates.  Then I called my mom to make sure we could use her shower until ours is fixed.  Right about then, Walker fessed up to the fact that he really doesn't like the look of our bathroom, so as long as we're having work done he'd like to do a fresh coat of paint and a new shower curtain.  The kicker is, I have to choose the colors.  Sure, honey, I'll get right on that.  I'm not looking forward to it since I chose the current decor, which apparently he hasn't liked since I put everything in five years ago.  I went online and found three options that I loved, but he vetoed all three of them.  I offered to get dressed so we could go to a department store and take a look, but he didn't feel like driving me.  (Officially, I'm not supposed to be driving myself yet, though I'm not taking any meds so I probably could.)  Yep, this is going to be a fun project.

Finally, Walker's work schedule changed.  He now starts working at midnight.  That means he'll be sleeping in the afternoons, so I have to find another driver to take me to my appointments.  I also have to try to be quiet in the afternoons.  I'll need to start getting up earlier to run the dishwasher and blow dry my hair before he goes to bed.  He's been working so much overtime, I'm glad that his company is making changes to give the crew a break, but we're both going to have to make some adjustments.  

How Much is Too Much?

Last Thursday I had my first appointment with an oncologist. I went in thinking I would get a treatment plan, and I had decided to spend the weekend researching the drugs and making a plan of my own for managing the effects my treatment would have on my daily life: how to prevent getting sick while my immune system is compromised from chemo, figuring out how to keep up with the housework if I'm too tired to do it myself, finding what I would wear when my hair falls out, looking for support resources for Walker if this whole thing gets overwhelming for him, dealing with my job....

I didn't get a treatment plan.

Dr N, the oncologist, first went over my treatment options. There are three choices on the buffet: radiation, chemotherapy, and hormone therapy. In my case, there will be a combo meal of at least two, radiation and hormones, but I'm still in the holding tank on the chemo. A test has been developed that looks at 21 factors of a tumor to determine the risk of cancer recurrence. The tissue excised during my quadrectomy is used for this test. The results take one to three weeks to come back. The lower I score, the less likely it is that chemotherapy is warranted.

Some women take the chemo regardless. They want to use every available weapon in their fight and no doubt, chemo is a powerful weapon. Some women absolutely refuse chemo, taking their chances with just the other therapies. And for many, that works out fine.

For me, well, some days I feel like my brain is a puddle of mush, incapable of making a decision. I don't know if it's stress, or fear, or information overload. Right now, without the information from the 21 point test, Dr N rates my risk of recurrence at 30%. Radiation lowers it to about 20%. Hormone therapy will lower it further, as much as down to 10% but more likely somewhere in the 12% range. Now, there is never a 0% chance of recurrence, unless you're dead. Chemo would knock a few more points off that risk rating, but it's pretty hard on your body. Some side effects can be permanent. So I ask myself, how much risk is too much? Is going through chemo worth a 5% drop in risk? What about a 3% drop? Every woman in America has nearly a 13% risk of developing breast cancer in their lifetime. Radiation and hormones put me right about at that same spot. Do I really need to go through chemo?

I'm trying not to form any opinions or make a decision until the test results come back. It's hard, though. For a person like me, who needs an action plan, sitting around waiting is the worst part of this whole thing. I just want to get on with it.

Click here to read a more clinical explanation of the test and treatment options.

Pink Ribbon Controversy?

I came across this article while researching breast cancer. It seems that some people resent the pink ribbon symbol being added to, well, pretty much anything. They aren't thrilled about October being Breast Cancer Awareness Month, either. Some breast cancer patients feel reminded of the disease when they see the ribbon symbol, and patients dealing with other cancers feel the pink ribbon takes attention away from research and fund raising for other cancers.
Well, I guess I can understand their points but to me, money raised for any cancer research is beneficial. What may start out as a breast cancer treatment could end up as a viable treatment for other cancers. Or possibly research done to learn what can cause breast cancer might also help identify causes for other cancers.
Then there's the awareness. Breast cancer is a very treatable disease when it's caught early. I think women need to know about screenings. I'm a reasonably intelligent woman but I put off getting my first mammogram because I didn't think I need it: I had no family history, I did self exams, and I am under 50. Too young for breast cancer. Or so I thought.
As far as the constant reminder to those who have the disease: do you ever really forget? I'm new to all this, and my life is much more than cancer, but I can't say that I ever forgot I was a cancer patient from the first moment I heard the words, "This is cancer. You have cancer." Pink ribbons at the grocery store won't suddenly remind me.
October means a lot of things to me: football games, local festivals, family time, evenings toasting our tootsies around the fire pit, and yes: breast cancer awareness. I'll be wearing my pink bracelets with pride.