I received our first of many medical billing statements for my surgeries today.  This is not an actual bill for money due now, but a total from the UWMC for my hospital stay, use of the operating room, a ~15 minute meeting with a physical therapist (who just watched me walk up and down a hallway and some stairs before I was discharged), a ~30 minute meeting with a occupational therapist (wherein she basically got paid to not really help me shower), my one night of a private hospital room, and food.  The bill is just over $73,000.

Big bill # 1 rolls in.

I have yet to get bills from my breast surgeon for the BPM, my plastic surgeon for the DIEP flap reconstruction, or the anesthesiologist, or the residents and attending physicians that checked on me and “met” with me every morning and every evening during my hospital stay.  We are EXTREMELY fortunate to have health insurance to get us through this, but I’m not sure how much our insurance is going to pay or is legally obligated to pay.  The Women’s Healthcare Act of 1998 requires that mastectomy and any other procedure or care relating to the mastectomy be covered by insurance plans that include mastectomy coverage.   My insurance plan does cover mastectomy, but I don’t know if my surgeons are “in network” providers.  I tried finding out prior to my surgery but the customer service department for our insurance company is hell in a hand basket.  I would’ve been more diligent in researching this like most women would have been, but honestly I was worried that the cost of the procedures would just give me more ammunition to put this off another year.  Fear inspires a lot of bad decisions, and I didn’t want to be a victim of my own fear or of cancer.  Here’s some more fine print that makes me worried we’re looking at a hefty bill:

If you want to have your breasts surgically reconstructed after mastectomy, you may choose the type of reconstruction you prefer, but your health plan is legally required to pay only for procedures that meet the parameters of its plan. Your insurer will likely approve your request for an in-network reconstructive procedure, but approval becomes less clear for out-of-network services. Your group plan, for example, may not have a surgeon qualified to perform the newer single-stage implant reconstruction or muscle-sparing microvascular technique you prefer. Some insurers grant out-of-network payments for these reconstructions, while others routinely deny them. If your plan doesn’t provide the reconstructive method you want, ask your prospective plastic surgeon’s office for help; they have experienced billing coordinators who are used to dealing with insurance companies and negotiating payments.

All I can think about after getting this bill is 1) what type of payment plan do you set up for over $70,000 in medical expenses, and 2) what happens to women who have cancer or BRCA1 or BRCA2 and don’t have insurance coverage?  When my sister was diagnosed, she had health insurance but it barely deserves that name.  I’m sure she and her husband were too terrified of her disease to even think about the cost of her care, but I imagine that the cost of these procedures is a deterrent for a lot of women.  What a shame to have to choose between a lifetime of medical bill debt (or bankruptcy), or, in the alternative, a much-abbreviated lifetime.  Please think deeply and sincerely about that scenario because I am certain that it is painfully true for thousands upon thousands of families.

Today I thought that I would discuss my seemingly, never ending fear of necrosis.  Necrosis is the death of living cells or tissue.  This is a big concern for me during healing, particularly for my flaps.  It is something that every reconstructive surgeon will have to face at some time or another with a patient, because it DOES happen, but there is not a very high incidence rate of it for patients in my demographic.  However, every day I inspect my flaps and my some-day-nipples for necrosis.  The sign that all of my surgeons told me to look for as definitive of necrosis was blackening of the tissue.  I feel like this was a poor choice on their parts.  Post surgery there is a lot of bruising and scabs everywhere; and, not everything bruises or scabs over at the same time.  So any time I notice a new bruise or a scab that I think I haven’t already inventoried, NECROSIS.  I am posting a photo below of my right flap that has a bruise today in the nipple site that wasn’t there before.  To me, it is black as night.  To my color blind, sometimes rational husband it looks the same as the rest of the skin.  He is a liar and he’s had a long day, so I can’t trust his words.

Does this bruising make my reconstructed breast look necrotic?

I will, therefore, spend too much time tomorrow morning trying to get in to see a PA or find an email address for someone at my plastic surgeon’s office that I can then bombard with photos of my flap.  While I am somewhat obsessive about my care and recovery, it is a very real possibility that I could develop necrosis.  That would mean losing tissue on my flaps, discordance of my flaps, more surgery, more treatment, more recovery, more bummers.  So I will keep you apprised of any developments on that aspect of my recovery.

Everyday I hear from a few friends and/or family members that are checking in on me to see how I’m progressing and if I’m in need.  The answer is always “better” and “YES”.     My friends Jennifer and Dana both emailed me today to touch base and offer their loveliness.  In my responses to them both, I mentioned what I refer to as my “T-rex arms”.

My T-Rex arms feel even smaller than this.

My inability to do a lot of things relates to me feeling like I have arms the length of and range of motion belonging to a Tyrannosaurus Rex.  My reach doesn’t extend much farther than my torso and the use of my arms is frustratingly limited, which I may have already discussed one or five thousand times.  Since I can’t reach above my head or very far at all, I have all of these little step stools around the house to make me taller and able to stretch from my legs or my torso to reach things.  This includes reaching outlets in our kitchen, bathroom, or into a cupboard.  I also use my step stool and an additional tool (like a wooden spoon) to reach things overhead (i.e. vent hood fan in the kitchen or task light switch).  These moments provide some simian humor, but usually just annoyance.  The T-rex arms also have me largely dependent on others for hot meals.  I can use my arms well enough to reach everything I need for a sandwich or a small snack, but I am still unable to cook on the gas range, reach the microwave (because of where it is in our kitchen), or use the barbecue.  So while I keep convincing myself that I’m only a hop, skip and jump away from independent self care, I really do still need help.

And, finally, the Dermabond is starting to come off of my abdominal incision.  Today I caught sight of one area where the scabbing and Dermabond have both come off, and the incision is far less Mary Shelley than I thought it would be.  Good news!

Abdominal incision free of scabs and dermabond looking pretty good!

Today's progress photo


All dressed up, no where warm enough to go. Skipped my walk today. Oops!