Cutie Pie

I figure I'm way overdue for a proper Bella update.  She just keeps getting cuter and more fun each and every day.  She isn't walking yet, but free standing with increasing frequency and definitely taking a few steps here and there.  Now I would say that she will be walking any day.  She is just taking her time mentally with it.  Physically she could have been running laps months ago! =)

She is also showing more and more of her personality.  She is a total crack up.  She loves playing games and "tells jokes" all the time.  She will babble some string of sounds and end it cracking up.  She really is hilarious.  She is also really developing her language skills, repeating words all the time.  Her awareness and memory really blow my mind.  Today I took her to Trader Joes for some groceries.  We had been to the store just a few days ago and I had purchased a fruit leather for her.  I gave her the fruit leather after we left the store and were in another store.  Today, we walk up to the register and she sees the baskets that hold the fruit leather.  She immediately started pointing and babbling, clearly wanting one.  I was cracking up.  I couldn't believe she remembered!  It isn't like this is a food she regularly gets at home or anything either.

I just love watching her grow and change each and every day.  She is so loving and funny and fun.  And super adorable- check this out!

Drain free

I am drain free as of today! Woohoo! My numbers never dropped to the level they were looking for but it was close and hadn't changed from my surgery. So I have to watch it in case my body doesn't reabsorb the fluid but I have faith it won't be a problem!

Also, the insurance saga continues. My medical group called me on Friday with the news that I do not have a copay for my shots because of my primary diagnosis of cancer. Apparently they looked at my secondary diagnosis first (anxiety or insomnia I believe) which caused all the problems. So they are sorting it out for me but at least that is solved. Still have to determine if the whole hospital pet scan is still correct but we will get there.

All good news.

Navigating the System

I posted yesterday about my frustrations with insurance.  Well I spent today on the phone getting the runaround from each and every office I spoke with (though the individuals all meant well).  At the end of a very frustrating experience I came to the conclusion that I am getting worked by the system despite my best efforts and just have to suck it up and write a check.  Gratefully I have an out of pocket maximum for the year and will meet it (actually exceed it) with one bill (plus all the payments I have made to date).  So I will pay that singular bill and send the rest back to my insurance company.

What kills me is how this business is set up.  For example, as a part of my initial diagnostics I was sent for a Pet scan.  They sent me to Novato Community Hospital for this scan, with no discussion of other places I might be able to go.  I was clear that I had a flat copayment for this service.  What I didn't know was that by virtue of the fact that I went to NCH for this test, I was treated as an outpatient for a procedure, which has a 20% copayment.  In this case, that copayment turns out to be 5 times the cost of the expected flat copay.  Although again it isn't about the money because I am going to hit that maximum regardless, I was flabbergasted that no one bothered to notice this for me, or warn me or give me any sort of a choice.  I know there are standalone radiology units where this wouldn't have been the case.  I don't so much blame my doctors office who referred me for being malicious, simply not aware of the difference or too overwhelmed to even think about it.

But this experience takes me back to what I said yesterday- who is looking out for the patients?  Here we are facing life-threatening illnesses.  Doing whatever it takes to save our lives, and getting screwed from every angle in the medical billing world.  How can we be expected to know our own policies well enough to be able to advocate for ourselves that we will not go to a local hospital for a scan because it will be billed differently than if we went somewhere else?  It would never have even occurred to me.  I did take the time to review my policy and familiarize myself with what the costs would be associated with each and every treatment and exam I expected to have.  But I absolutely could have had no way to know that things would be billed differently than one would logically figure they would be billed.  Between the location of my Pet Scan and the coding of my post-chemo shots, there was absolutely no way that I could have planned for or avoided these costs.

Maybe this will be my calling, putting together a non-profit that offers financial and billing advocacy.  At the time of diagnosis (assuming patients are referred to us as soon as possible) we would familiarize ourselves with their policies, and work to protect them from what feels like a predatory industry.  Too bad I really dislike this stuff personally.  Anyone love numbers and accounting and policies and want to help me get this service started?

The sad thing is that I think I am one of the lucky ones with decently good insurance coverage and the capacity to pay attention and advocate on my own behalf.  I just keep thinking about those who are worse off and still fighting for their lives.  It just breaks my heart.

Insurance woes...

I've been dealing with some insurance nonsense for a couple of months.  I think it is a running joke in the world of breast cancer (and frankly all serious injuries or illnesses) that insurance and billing issues are just par for the course.  It genuinely blows my mind however at how insidious this problem really is.  Generally speaking, I think my treatments, appointments and tests have all been standard of care.  I haven't had anything truly out of the ordinary.  Yet, somehow, my doctors office, medical group and insurance company can't seem to figure it out.

The current issue that I am dealing with truly amazes me.  After each chemotherapy treatment I was given one to three shots to boost my white blood cell count.  I had to go into the doctors office for each of these treatments.  My medical group approved these treatments, and authorized my doctors office to treat.  For some reason they are billing these shots as "self-injectable".  So what difference does that make to me?  Well if it is a straightforward "injectable" (i.e. the doctor gives you a shot, like I experienced) it is covered 100% by insurance.  If however it is a "self-injectable" I have a 30% copay.

I've notified my doctors office of this clear mistake (which by the way I had my insurance company confirm for me) and yet they and my medical group are continuing to argue that it was billed correctly.  This in spite of the fact that my insurance has been denying half of the claims, and payment is delayed as a result.

So tomorrow I will spend another day on the phone trying to get this business sorted out.  Gratefully I know how to read my insurance policy and reasonably understand what I'm reading.  I also have the ability, energy and wherewithal to pay attention and speak up when something is wrong.  I can't help but think about how many people just can't or don't deal with these issues.  I'm willing to bet at least half (if not more) of patients with serious illnesses just accept what is put in front of them and never think to question it.  Makes me want to create a service to help people with this exact issue.  I know I would appreciate someone else keeping track and advocating on my behalf so that I can spend my energy healing, getting healthy and loving my family with whatever is leftover.

relationships

Today I am struggling with relationships and cancer.  Try as I may, this disease has affected me enormously and my relationships can't escape unscathed either.  One change (albeit temporary) is that I have had to close in a little, become a little bit self-absorbed.  Between being physically knocked out, and simply coping with what is on my plate, I've been forced to make myself the priority in my life.  It sounds a little silly when I put it that way.  After all- shouldn't we all make ourselves our own priorities?  I suppose that is true, but it feels unnatural to me.  Don't get me wrong, I believe in taking care of myself, but usually feel like someone else's needs trump my own.  Not hugely to my own detriment, but it is not uncommon that I feel I come second (or third or fourth... etc).

Anyhow as I've closed in on my world, my relationships have been affected.  In some cases it has actually been beneficial, allowing me to let someone in where before I would have been self-sufficient.  This has in turn allowed these relationships to become larger and deeper.

In other cases, the relationships have suffered.  I'm unable to show up in the ways that I'm accustomed.  I don't have the time or energy to nurture the relationship, to give the effort to ensure the other person feels loved and supported by me.

Don't get me wrong, I don't believe that anyone blames me, or even expects more from me.  Regardless of that, relationships suffer.  Not to put Nick in the hot seat, but as a good example, I just simply cannot be a partner to him right now.  I'm barely able to care for myself (sometimes not even that), and caring for our daughter falls next in line, so by the time his needs come up, chances are, I'm spent.  He's a trooper of course and an amazing husband, so although there may be some temporary damage happening at the moment, I know that ultimately we will get through it.

It is really hard to know all of this though.  To sit idly by as relationships suffer causes me so much distress.  I know I should just "get over it" but that isn't something I do easily.  I just train my focus elsewhere, whenever I can, and deal with circumstances as I am able.  It just saddens me to no end as I see some of my relationships slip through my fingers.  The amount of work it feels like it will take to repair them seems insanely daunting from this point in time.  Who knows, maybe I'll get through this crazy time and it will feel like no time or space has gone by at all.  I can only hope!

Another perspective

Yesterday I was not doing well.  I was feeling my mortality and the weight of this disease.  I was really thinking about how many women eventually succumb to this disease even if it is 30 years down the line with a recurrence.

Today I was talking to my dad about this.  He reminded me how much we learn every day about this disease and how much better we are treating it today than we were even 10 years ago.

I know that we will know so incredibly much more about this disease in 10, 20 and 30 years down the line.  Heck, by then, maybe we will even know how to cure it.

It was a good reminder that I can easily buy into to alleviate my fears.  So no more stressing about that. =)

On another note, I am officially off duty for party planning.  I was informed that it wasn't my job.  So I shared my ideas for the evening and have handed off the responsibility to Nick.  I'm sure it will be a wonderful evening.

More Doctors

As I have new appointments and treatments, I keep adding doctors to my team!  Today I met with a new member of my team, the Radiation Oncologist.  I will be undergoing radiation treatment as the final piece in my process (at least based on what we know right now).  Dr. Halberg is my new doctor and will manage my care (along with my surgeon who I met with first, and my plastic surgeon who will manage my reconstruction) from here on.  She was very kind and enthusiastic in her care.  I will have 28-30 treatments which will start in about one month (once I've really healed from surgery).  If my calculations are correct, I will be done before the end of October.  That's what I always sort of held in the back of my mind but then knew there was a possibility with timing that I could be pushed into mid-November.  I think the end of October is my far end though.

Other than that I'm healing well and starting to feel a bit more "up" physically speaking.  I even spent a good chunk of the day out of the house today.  I still can't lift anything (most specifically Isabella) because I still have one drain in.  As quickly as that first drain came out, this second drain is just hanging on.  They are looking for a certain amount of fluid or less each day for a minimum of three days.  I'm so close to that amount, but I've been sitting at the same quantity (more or less) from the beginning.  There just doesn't seem to be much change.  I'm just reminding myself that it is better than having it accumulate inside me.  In my doctors words- at least it is draining.  Hopefully early next week at the latest.

I'm also starting to do a little more emotional processing as I am less occupied with my physical healing.  It is day to day with how I feel.  The fact remains that mortality goes hand in hand with the diagnosis of cancer and everything with it.  As I reach the end of my own treatment, I can't help but think about the many woman who go through this more than once, and frequently succumb to the disease eventually.  I hold strong faith that this was a freakish one off experience for me.  However, the doubts tell me that so many women have their cancer recur and usually when it does come back, it is harder to treat.  For some reason I just keep thinking, even if I live 10, 20, heck even 30 years beyond this disease, I would still be dieing very young.  Thirty years from now I will only be 59 years old!  I'm realizing that I definitely need to get some true help and support (professional and from those who know personally) to deal with the reality of what I'm facing.  Cancer will always be a part of my story from here forward and somehow, I am going to have to come to grips with that.

Onward and upward right?

Antsy pants

I'm feeling oddly antsy today. Considering that I woke up feeling like a freight train had run me over, it is a little unsettling. Perhaps a sign that my body continues to heal, allowing more energy to go to my brain. I'm thinking about things to do, plans to make, and most of all fun to have. Putting this in perspective though, I was up too long last night taking a bath, visiting and eating dinner, that I ended up sick. "Too long" was apparently two hours. Lesson learned but it sure puts a damper on my "get up and go" energy. I suppose that's part of why I'm busying myself with plans for the future!

One of the bigger topics I'm considering is my big 30th birthday/ I kicked cancers ass party. We need to pick a date and settle on some basic details. Nick wants to go really big, but I'm looking at the reality that we are still paying off our fertility bill. So the fine line between I deserve the best and let's be smart about this is what I'm walking.

So does anyone have any suggestions for awesome party locations that can hold a good number of people (maybe around 80?) and is still semi frugal? I'm imagining a cocktail party with dancing and fun fun fun! Something to look forward to for sure. I am ready to celebrate!

One down...

Today was my post op appointment with my surgeon. She already removed one of my two drains! Woohoo! We expect the other one will be done in a few days so I will see her again on Tuesday fully expecting it to come out at that time. Less than a week for one and about 10 days for the second. Not too shabby.

Other news from the appointment? The unofficial pathology report! We will get an official copy but the lymph nodes were definitely negative and the tumor went from 4.6cm (ish) round (ish) to just spots over a 2cm area. No solid tumor left! And the margins were a big juicy 2-3 cms around it- so nice and clean.

All of this is the news we wanted. I had a nearly complete pathological response to chemo, a clean and successful surgery, and will finish out with radiation to lock in my cancer free state for good. I'm feeling really great and positive about all of this.

As for my surgery recovery- I'm still a little woozy from the meds but much improved. I had been on percocet since the hospital and decided that perhaps that was the cause of my never ending sleep cycle. I had some vicodan left over from chemo and decided to swap that in for one round of meds. I felt like a new person and kept it going. My energy is much improved as a result. I feel much more confident weening off the vicodan as appropriate as well. Still no lifting and lots of rest required but I feel like I'm on an upward trend.

I'll get my life (and my baby) back very soon! Though now maybe I can enjoy some of those movies and books I had in mind... 

Why am I always surprised...

I've essentially been in bed since I arrived home on Friday. I make it a point to get up at least once a day, even just to sit on the couch for a bit but I am absolutely exhausted. I'm sleeping all day and all night. I'm not sure why I expected any differently. In fact I didn't expect different and yet somehow I still feel surprised at how down I am. Visions of reading a book and watching movies while I let my body heal are quickly slipping through my fingers. I seem to be lucky to eat anything other than yogurt and tv is way too much work!

Overall I'm doing well. Major surgery is just that- major. So, I sleep.

Home and cancer free

I arrived home from the hospital yesterday at about 4:30. I'm feeling pretty good considering and am impressed at how quickly I continue improving. Initial tests showed that my lymph nodes were cancer free and my surgeon said she couldn't see the tumor in the breast tissue. Final reports take 4-5 days so I imagine I'll share that info after my post-op appointment on Wednesday.

Just feeling pretty blessed and grateful right now.

Here We Go!

Tomorrow morning I am scheduled for surgery.  I will arrive at Marin General Hospital by 6:30am and am scheduled for surgery at 7:30am.  I should be out of surgery between 11:30 and 12:30.  I will spend one night in the hospital unless I need to stay longer.  I don't anticipate that, so I will be home on Friday!

I am having a mastectomy of the right breast and a sentinel node biopsy.  They will remove the breast tissue, while preserving the skin and nipple of the right side.  Once that is done, a tissue expander will be placed under the muscle to preserve the pocket for future reconstruction.  There will be two drains placed as well which will stay in somewhere from one to three weeks.  The sentinel node biopsy will have three to five lymph nodes removed and checked for cancer cells.  Today I was injected with some radioactive material that will travel to the nodes.  The way it works is that it will go to one node first and start to collect there, and then travel to the others.  The nodes that have the most material left (determined by a fancy geigercounter) will be the ones they remove.  I am completely confident that those will be negative.  The part I am most interested in is how much cancer is actually left.  We have a point of reference from the MRI that was done after my last chemo, but it should have continued to shrink after that point.

Tomorrow, I can say that I am cancer free.  This is a big deal.  Although I'm scared (surgery isn't exactly something you look forward to) I am ready.  I am ready to be truly on the road to recovery and not just in the process of getting worse before I get better.  I am ready to get my life back.  I am ready to be mommy, and wife, and friend, and not the broken person.

So keep me in your prayers and thoughts tomorrow.  It is a big day!