wide-eyed at 4am

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Parallel Mammogram

I felt as though I was in a parallel universe. Living two years ago, sitting in the small sitting room at the Breast Center awaiting news from my radiology nurse. Continue reading


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Am I a New Person?

The journey changes you. I AM the same person and in some ways I’m getting back to “normal.” But I’m also totally different in some ways. It has to do with perspective and priorities.

I have a new concept of what is important to me and the things that aren’t, I can for the first time just let go.

This is represented very clearly in my need to clear things out: get rid of what is useless to me. Before the journey, I would think …. Hmmmmm ….we might use that if we have a party where we want to have this or that on the deck… or I might want that if we ever go to this place or that.

I’ve finally seen the light and realized that I should use a formula when deciding what to keep and what to “release.” The formula is calculated by the answers to these questions:

Is it used regularly? Or used at all? + What is the chance that it will get used for what “might happen in the future” + how valuable is the space that it is taking up? = keep or release

This formula makes it quite easy to get rid of items that I just “couldn’t part with” before.

We’ve cleaned out our cloths closets several times. We’ve cleared out lots of space in our craft and supply closet and in the shelves and cabinets of our office. I “released” lots of old client files and duplicate samples and examples (if I keep them at all).

I was surprised (but not really) at how old some of these items were. We found cords and chargers for old phones and old Blackberries and cases for Blackberries. I found ink for printers that no longer work, coffee makers that we will never use and espresso machines and mini fryers that we will never use. I found “spare” irons and – oh yes – empty boxes from phones, and other devices, and handbooks for long gone of the same.

Amazing what gets pushed back and covered up in such rooms, closets and cabinets.

The attic is next. Lots of stuff will go.

I’m not sure if it is a southern thing or just something with my family but we all have always saved gift boxes so that you don’t have to get or buy more the next Christmas. My Grandmother had a supply of them as does my aunt, mother and sister so it’s not just me. But looking at them when I’m in the attic gives me a headache now so I will get up there a get rid of the heat baked and crushed ones and select what should be kept and break them down to store. We also have tax records that go WWWAAAAYYYYY beyond when even the IRS would find them informative. They are going. There are Christmas decorations (like individual window candles) that I don’t use anymore and are mostly broken, yellowed or burned out and too old to even find replacement bulbs for. There are heat-baked bows and door wreaths that once were but have now ceased to be attractive. It’s just time.

I’ve figured out that if I REALLY ever do need or want one of these space-consuming, past their prime items again, I can purchase a brand new, updated one.

What is it that produces this phenomenon? Is it that you realize you could leave this earth is a second and you don’t want someone to have to clean out your house? Could it be that staring cancer in the face makes you realize that you just don’t need all this stuff. And if it isn’t useful, it really is just crap.

That is where I am. Even when I’m out shopping, I have a more specific and selective eye. There is no more “Oh, we could use this for XX is we ever XX.” Or “OMG this is a great price. I might wear it.” Nope. Those days are gone.

Could it be that I’m more focused on what is important and more focused on clearing out the clutter that might be getting in the way of it. Sort of like how focused you get on the finish line when you can actually see it. When I’m coming to the end of a run and I’m thirsty and panting, the sight of my endpoint makes me even more determined about getting there.

There is clarity in focus. It’s really a good thing.

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A Calm Understanding

It’s new that stress is always on my mind. I know I was under stress prior to the cancer journey, but I never really thought about how I handled it or how it affected my physical well-being.

Now I do. Once you hear that stress can definitely be a factor in cancer’s occurrence, you think about it differently.

Some things have happened…job related….that I may have had a different reaction to prior to the cancer experience. I think they would have stressed me out MORE.

Basically, several folks moved on to other employment opportunities, we’ll say. These folks were the core positions of the team that I work on and some that made up a closely related team. Structure is changing over to match what customers need in a better way so it’s a good thing for the company. What is difficult is how departments change during times like this.

So the marketing team is now pretty much three contractors (me and a two graphic designers) and an interim manager.

And I’m OK with it. Even though my workload has greatly increased, it’s OK. A company that I’ve been with for almost 10 years needs for me to step up and be consistent and I will.

But I’m calm about it. It’s a funny inner peace.

After this journey – during which I worked full-time keeping up with everything for 4 clients – I’ve not been strikingly stressed over anything. Not even the surgeries and treatments.

Faith gives me the understanding that everything will work out. Support from loved ones gives me confidence that I won’t be alone during any of it.

So I learned that this concept doesn’t disappear as the most difficult parts of the cancer journey are behind me. It’s lifelong. It’s always with me and always has been.

My plastic surgeon’s nurses are amazing people. One in particular has been especially supportive. During a recent appointment, we were talking about the silver linings and gifts that do come from the cancer experience. For me, one of the most reassuring ones has been the discovery of this strength, assurance and calm that exists within us all – if we will just let ourselves find it.

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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.