wide-eyed at 4am


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And Now the Scammers…

As if you don’t have enough to deal with when you’re on your journey with cancer, scam artists have to enter the picture.

Even if you have amazing insurance (which thankfully has been my experience), managing the financial end of the cancer journey is – to say the least – interesting.

It can be quite overwhelming when medical bills and hospital statements start pouring in.

Some of the best advice provided by my navigator was “Don’t even look at your bills while you’re going through treatment.”

It’s sooooo true.

Things can change with what you owe and what your charges eventually finalize as so the best thing is to let the filing process take place (it will take your providers at least 30 days to do this – some larger facilities take longer).

No one is going to come after you. They know how this game works.

The first year of my journey (2015), I was close to meeting my deductible by the time I had my mastectomy. I had already had my needle biopsy and lab fees associated with that, so – like I said – I was practically to my deductible.

And the surgery immediately put me over the top with my out-of-pocket maximum, so moving into a second surgery and on to chemo and lymphedema therapy in the fall was sort of financially non-eventful.

But starting off in 2016, I didn’t have the one huge event right off the bat to force me to immediately exceed my limits.

I didn’t think this would be the case because I was still in the midst of chemo when the calendar year changed. This is when I learned how “the order of things” work. What I quickly learned (from a very patient and fabulous BCBSNC rep) is that it really doesn’t matter when I HAD a procedure. It matters when they PROCESS their bill with insurance. Ah! And like I noted above, some institutions are much quicker than others….

So reaching my deductible and out-of-pocket limits was confusing to me. This is when waiting pays off. I watched my BCBS account online and saw items filed – some items filed and refiled.

I was pretty meticulous about this (and actually found it interesting to look at what charges for myriad of processes and procedures of my treatment were) so I worked pretty hard to match my paper invoices and statements up with what was filed online.

This is where I got confused and learned the lesson to just let everything work itself out.

I thought people were double billing. I thought I was getting charged past when my limits were met. I thought charges were issued on dates that I wasn’t at particular facilities.

It will make you insane – if you let it! So don’t.

I only let it consume me for a couple of days and then I talked to the fabulous BCBS rep that I referenced earlier. And after that I could just let it go!

I learned that you’re not only going to get invoices from some institutions, you’re going get monthly statements. I have so much paperwork from JUST invoicing, that I created a separate filing system for that and all of the other paperwork pertaining to the journey.

Actually, the American Cancer Society sends cancer patients a medical paperwork filing folder. But I already had ones set up and actually preferred having mine organized in separate folders by “other” paperwork and invoicing because it really is 2 different worlds of your treatment.

After learning how to “collate” my invoices, I could see how many of them were pertaining to the same charge. The reason you have to watch this is this: I saw some of the charges change.  I also had charges from invoices that didn’t match the details for the corresponding insurance filing.

So I kept my checkbook closed. It was the end of the year before I actually paid this off. It was liberating when I did (and I wish that could have happened earlier) but I did NOT want to pay something that would need to be refunded to me. These places take as long or longer to refund something as they do to process it. You really don’t want to have to wait 90 days for CMC to refund you several hundred or thousand dollars.

The “fun” part came when the calls started.

I knew this was unusual because larger medical orgs are sort of like the IRS, they don’t have the tie nor staff to call people about accounts. They send you a statement and ask you to call.

I actually only had 1 group call about an invoice. It was the radiology folks. They are much smaller and handle their own stuff….not woven into part of CMC. They even involved a collection agency. But the amount was in the 4 digits, it was in the 3-digit range so I had an easier time with it. I did explain that I was trying to make sure that I paid the right people and not people whose invoices preceded the whole insurance deductible/out-of-pocket limit shake out. They were very helpful and cordial about it.

Make a note here too, if you get a call from a “collection agency” representing the organization you owe: A collection agency will not be in contact with you at the same time as the organization… The organization CAN NOT contact you after they engage the collection agency. So the first clue that the collection thing is a scam is if you are still getting invoices from or you’re talking to your provider.

So I mention scams.

Yes – there are people who are low enough to prey on cancer victims. They know that the details and side effects of your treatment is confusing and brain numbing enough that they may be able to get some money out of you before you realize you’re not paying the right people.

It’s important to KNOW who you’ve paid, who the organizations are that you owe and the status of your accounts.

These people are aware of this and call themselves names that are very close to the organization where you went.

They are devious. Don’t let them pull one over on you. It’s great to let them know that you now they are scammers. It makes them mad sometimes and that will at least give you a laugh as you have to deal with such scum.

It’s not just coincidental that scam is only 1 letter different than scum.

 


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To the Final Progression

It’s all a progression and I’ve finally taken the last step in it.

I remember back in the early days of the journey when I was checking in at my plastic surgeon’s office…a lady about my age was checking in too. I heard her say that she was here to get her tattoo. My initial thought was that it would be forever until I reached that point.

But here I am. I can’t say that it seems like just yesterday because there has been lots of mileage since then. However, surgeries, treatments, procedures and therapies keep you so busy that the time has seemed to go by more quickly that I thought it would when I was first diagnosed.

I’ve been looking forward to this because it’s interesting and it’s an unknown world for me. I’ve no previous experience with tattoos – and particularly not medical tattoos.

I think I was actually a little nervous going into this procedure. I haven’t been “nervous” about anything in a while – probably since my initial radiation appointments.

I didn’t know what the appointment would include, how long it would take, how long the recovery would be and what the results would look like.

What I learned about the process is:

That it includes matching shape and color to the other nipple, prepping the skin with lidocaine and epinephrine before actually applying the tattoo.

The process takes 2 hours.

Cover and treatment with Aquaphor must continue for 7-10 days.

The jury is still out on this one but I’m beginning to see the similarities in the existing and tattooed nipples.

My amazing experience with CMC Cosmetic and Plastics continues. They’ve truly made this finishing touch very positive and esteem rebuilding for a patient who has likely been through the ringer.

Here’s a little background. This tells you a little about how “all about the patient” this group is.

Initially CMC Cosmetics provided a nipple tattoo in a stamp process. Apparently, the results were less than desired by the patients and the services providers. CMC Cosmetics sought out a new process. They found a medical tattoo artist in Asheville and referred patients to her. But that wasn’t the best option since it required patients to drive to Asheville for this final finishing touch. And these folks wanted that experience to happen in their offices. (I would feel this way too since I’m a little control freaky.) So they brought the Asheville medical tattoo artist in to train a couple of Pas who had volunteered to acquire this skill. Training with her fo 2 weeks, the Pas learned everything they needed to know about size/shape, color decisions and techniques for mixing inks and applying the tattoo on healthy, radiation treated and scarred skin.

Now CMC Cosmetics offers this service in-office, using their PAs who put their training to work to get great tattoo results. They use the same type tattoo gun, ink brands and colors as their Asheville resource. I was not charged additional fees for this service,

Back to my experience:

My PA-tattoo artist spent several minutes discussing the procedure and how we would go about it. The main concern is that you achieve appearance that you’re pleased with and can be comfortable with.

Then the shape determination began. They had silicon examples in various sizes. We “tried those on” until we found the one that matched “me” the best. We saw that my reduction scar had actually drawn my existing nipple (actually it’s the areola) down into an oval more than a circle. So my “artist” determined that she would follow the basic size of one particular example and then extend the bottom to match up the two sides.

She then drew the outline of my new areola shape with a pen (pretty much a flesh-toned sharpie).

Next was color. I had already examined the choices (which were quite a few) and thought I had an idea of what she would use.

She painted test patches next to my existing nipple so many times that we practically created a daisy. But after mixes pinkish tones and sandy neutral tones, we found 2 that would match my existing colors pretty dang closely.

Next was numbing. Just as when I prepped my port for chemo, she applied the prep gel to the area when her “work area” and then covered it with plastic wrap. I had to wait at least 20 minutes for numbing to take place. I’m not really sure that this was necessary since I don’t have feeling in my skin there, but their experience is that sometimes people do feel this – and there is an agent that reduces bleeding – so they apply the gel every time.

Next comes the tattoo. The main thing I felt was vibration of the gun and her quickly applying the needle. I had never thought about how much force it takes to do this. They have to penetrate the skin. My best comparison is when you get a shot in your arm that is applied straight into your skin – not intravenously. They have to sort of “dart” it in. That’s what she had to do thousands of times to create the solid color of the areola and then to tattoo my nipple color onto the newly created skin flapped that my surgeon created during my November surgery.

I noticed that the only discomfort I had was over on the side almost under my arm where my drain scar is. She noted that you almost always have a “sweet spot” where a nerve will connect to a place where there is feeling. Apparently there is one of those from my nipple area to that drain scar. It was so uncomfortable that post-process, I couldn’t take in a deep breath without pain. That sensation was gone the next morning.

Stiffness and tightness did extend through my breast area around my implant, under my arm and into my shoulder. Day3 and I’m still not quite over that. I think (because of my lymph node situation) that anytime things get disturbed in this area, I will have this sensation. It just takes recovery time and massage to get through it.

So on Day 3, I’m still doing the nonstick gauze and Aquaphor and I’m on the lookout for scabbing – which I cannot touch. Picking at scabbing can pull the color pigment from my newly tattooed skin.

What is cool, is that I can go back to CMC Cosmetics in a few weeks, a few months, a year, a few years to get touch-ups as needed (at no charge).

I have a follow-up with my plastic surgeon in May at which time my PA/artist wants to come in and check my tattoo. She noted that – if she sees a need to tweak me at that point – we will schedule a touch-up.

I think this is totally cool. I felt very cared for. It’s above and beyond to me that they provide this in such a thoughtful and compassionate way.

But then – everything they’ve done has been this way. In fact, every experience that I’ve had in this journey has been that way – from initial examinations, diagnoses and plans to all surgeries, hospital stays, treatments, therapies and consultations. It has been amazing. It has helped me and Dennis get through the part of this journey we’ve survived so far.

I’m anxious to see my post-scabbing/healing nipple/areola tattoo results – about 7 or so more days to go.


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It’s in the Singing

Silent Night, O Little Town of Bethlehem, Joy to the World, Angels We Have Heard on High, Away in a Manger, O Come All Ye Faithful, The First Noel, It Came Upon a Midnight Clear….these are familiar carols of the season. Ones that take me back to childhood.

Music is such a big part of Christmas for me.

We sang in the car – even if we were just coming to Greenville back from my Aunt Frances’ house in Pelzer. We sang many favorites including the ever-popular She’ll Be Comin’ ‘Round the Mountain When She Comes. I was the ‘littlest’ so I always sat in the front between my parents. My mom has a pretty, very clear voice, so we would ring out every song – loud and clear – except Twinkle Twinkle Little Star. We used our soft voices for that so we wouldn’t wake up the stars.

While Christmas shopping uptown, running from Belks to Iveys and Meyers Arnold, we dodged (or sometimes didn’t successfully dodge) the old parking meters as we excitedly ran from store window to store window to see the decorations. In the car, I distinctly remember looking at the lights and bells strung across Main Street and singing Silver Bells with my mom. We quickly transitioned into White Christmas, It’s Beginning to Look A Lot Like Christmas, Have Yourself a Merry Little Christmas and The Christmas Song…

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We always had music in our home. I remember my mom and my grandma – who just played shaped notes – banging out tunes on the old upright piano.

My brother and I each took piano lessons. It was like torture for me but my brother was the master of the it. His hands flew all over the piano playing what was written and whatever he thought appropriate to improvise in. We had all of the Christmas sheet music and books. We would stand around the piano for hours – him playing and me singing every song. Precious memories. I wish we still did this when we visit “home” at Christmas.

If my mom couldn’t find me during the holidays, she would know that I was sitting in the chair beside the Christmas Tree listening to my favorite Christmas album. One side was a collection of my favorite carols and the other was a narration of The Night Before Christmas and some other readings about the nativity, Jesus and the Christmas Star. I would let my mind wander and the lights blur in my eyes. I suppose you could say this was how I dreamed of sugar plums…

I’ve been in a choir since I could stand up to sing. Mary Did You Know in every arrangement possible was my fav

orite after I got old enough not to be singing about the donkeys going clop clop clop…

There is so much beloved music at Christmas – Sussex Carol, Magnificat, In the Bleak Midwinter …. whether we’re singing Bach, Brahms, Byrd, Duruflle or Handel, amazing memories, imagery and emotions are annually reborn.

Much of our Christmas mood centered around our choir music even more than usual since we didn’t decorate and weren’t home for several of the December weekend days. I really enjoyed the altar and Chrismon tree in our church. I found myself gazing at them as I used to do our family tree as a child.


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This Holiday Season

This has been a very interesting holiday season.

Let me start with Thanksgiving. Because I was quick about it and got my Thanksgiving decorations down as I put my Halloween ones away (in the attic), I had my house decorated with symbols of our need to give thanks and ones representative of the first Thanksgiving – and the Fall season in general.

Not much reaching and lifting was involved so a few days after my Nov. 2 surgery, I did my decorating.

I thought that by the weekend after Thanksgiving, I would feel up to getting Thanksgiving put away and Christmas out.

Not so much.

I did manage the dismantling of Thanksgiving, but the twisting and turning bending and lifting in odd positions it would take to get the Christmas decoration bins and boxes down – much less up – was going to be quite impossible.

Unusual Moves

Don’t be misled. I had been working out with our trainer and my strength and flexibility was good. I was even beginning to do some core strength exercises to engage my abdomen muscles. But the positions required to get the… hmmmm…perhaps 25-30 bins of Christmas décor to the disappearing attic stairway and then hand them down to Dennis… made me a little dizzy from the “discomfort” of twisting with weight.

I had never imagined that harvesting fat from my abdomen to insert into “gaps” in my chest and underarm would be sooooo painful and take soooo long to recover. There are actually a couple of places that are still a little tender today – just a few days before the New Years – when I lift things in certain ways.

This is only relevant because it means that we had no Christmas decorations up for the entire season except the Christmas towels on the oven door handle.

Despite the lack of holiday symbols around our home, there is still joy. Joy in what the season’s all about and joy that all of what we were facing last Christmas is behind us.

Not Even the Wreath

Why not just get the wreath for the front door? Well – the wreaths for the doors are stacked to the side of the 25 or so bins. And I can’t get to them without moving a bigger part of the bin collection. I also had no time to bake so the aromas and fun of creating delectable holiday fare for friends and family just couldn’t happen. We were out of town the first two weekends of December (12/3-4 and 12/10) and had heavy duty performances of special music on the “free” Sunday (12/18). We finally began our Christmas shopping during the week to 10 days prior to Thanksgiving and had to continue it around the trips and music.

A Different Kind of Holiday Stress

In addition to these factors entered the sudden workload increase imposed by the exit of two key employees with my key customer….this happened between 12/1 and 12/6 which is my birthday.. Yeah right…happy birthday.

My November was stressful in trying to get back into the swing of things from what should be my final step in breast cancer surgeries and treatment (except for my tattoo date on 2/2/17). It took me longer than I wanted it to. I have had interesting soreness, interesting sleep pattern disruptions and continued side effects from radiation and chemo. (At least my hair is really cute!)

Just as I thought the stress level would dissipate, the opposite happened. Stress of picking up the slack for things that I’m not familiar with and have skeletal instructions for, just hasn’t been fun. Facing quick deadlines that couldn’t be moved that forced me to force someone else to join me in sacrificing parts of our days on Christmas Eve and Christmas Day to see challenging projects through ‘til the end… was no fun and nothing but stressful. Today, that project is complete but we’re on to other things that are jumping up and surprising us that were previously on someone else’s plate.

Work That Is Neverending 

Even on this “vacation” week between the holidays, I’m working on things that I didn’t think needed “doing.” What is it they say “No rest for the weary?”

It WILL get handled. It WILL all get done. If you know me you know that’s the way I am. Luckily I have compatriots who are just a anal and OCD as me.

One thing at a time, one day at a time. That’s the way you eat the elephant. Sounds sort of like the way you have to get through the breast cancer ordeal…only a smaller elephant to eat.

 


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Thanks Giving – Really

And giving thanks is exactly what I’m doing this year even more than years before. Even more than last year, I think.

I fought it, my mom insisted on doing most of the cooking and work for Thanksgiving this year. Actually everything except dessert…I made my 3-layer dark chocolate cake.

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We had a good visit – although sometimes frustrating – as it is every time the fam gets together.

Dennis and I got there early to help if it was needed. And it was.

I helped with the gravy, getting the dressing in the pan, setting the table and carving the turkey. Thankfully, mom had done several things ahead so the last minute things weren’t overwhelming.

I tried to help minimize the clean-up by washing and putting away dishes, pots and utensils as we went along, but there was still lots of clean up once we were finished. We stayed afterwards to help in that department too. I know they could’ve gotten it done, but I know that my mom was tired and needed to relax the excitement died down. Stress is  not her friend with heart failure…

We’re actually treating ourselves to a deep fried turkey that we purchased from Wild Wings. I’m making apple-sausage stuffing and giblet gravy, brussels sprouts with figs and pancetta, and walnut cranberry sauce.

We wrestled enough chocolate cake from my dad to have for our dessert….

At least I feel like cooking. That wasn’t the case last year: I chopped a few nuts but mostly watched as our 2 daughters combined efforts on an impressive Thanksgiving feast in Tampa.

Thinking back, it’s hard to imagine that just two years ago I had no idea that this journey lay ahead of me.

Now that I’ve had my “final” surgery, we can move on, right?

Lots of people are congratulating me and that’s great. But (unless they’ve experienced “the journey”) it just isn’t clear to them that the journey is one for a lifetime.

The fear looms that a check-up will reveal that “it’s back.”

I’ve learned that and I’ve had very few procedures (only 2) or “check-ups” since completing treatment. But procedures, scans, samples and tests are lining up already so that I will understand the constant anxiety that my sisters in the journey have told me will accompany each appointment.

Regardless of how beautifully I recover and how amazingly my plastic surgeon rebuilds me, the journey will never be over. Marked for life as a prime candidate for re-occurrence, each milestone will be a check-off to add another month and eventually year to the cancer-free time tally.

So as I reach this point, I’m thankful for it. But I’m more thankful for the people who support me, the people who are also on the journey and understand, the doctors who “keep the watch” and the nurses who encourage me every time I see them, for the medications that help me check off those milestones and for my body’s amazing ability to revitalize itself from the barrage of surgeries and treatments.

I’ve never hidden the evidence of the journey. Not when I had hardly any hair or when my port scar showed.  I think I’ve frightened a few people in the athletic club locker room. No one says anything but I can see that they stare. And even when these scars have diminished, they will never totally disappear – just like the journey. Hopefully those who gawk realize what they can do to keep themselves out of the same predicament.

I’m actually thankful for the experience because of the realignment of priorities and perspective it has caused. I’ve let go of some things and continue to be able to let go of things that I once thought I couldn’t part with. I’m passionate but about some different things. I’m still OCD and driven but understand more clearly what I do and don’t have control over. I’ve met some amazing people: doctors, nurses, specialists, other patients. I’ve seen amazing advances in medicine put to work for me and learned some amazing things about how my body and many other organisms, foods and nutrients work together.

So this weekend I realize that I’m a lot more than grateful. I’ve experienced enlightenment, renewal….and thankfulness.