Questioning Our Health Care System

I had “fill up” number 2 today, and let me tell you, this process just gets weirder and weirder.  Dawn and another nurse filled me up with another 100 ccs in each boob.   I was shocked with how big my boobs were when I sat up after being filled up.  Although the tissue expanders don’t look like real boobs (they sit up high and look like balloons under my chest), they have given me a lot of definition in the chest area.  I’m starting to get the feeling that I own certain shirts/tops (dress shirts in particular) that may not fit me when I’m totally filled up.

I experienced a bit of stretching pain after today’s fill up, which I have remedied with ibuprofen.  I can’t imagine how painful the last “fill up” will be if I’m already needing to take an anti-inflammatory.  Dawn confirmed that I’m “not gonna like her very much” after the last fill up.  I scheduled my last fill up appointment at the end of the day so that I can jet directly home to take a painkiller and chill out with my gynormous breasts.  

The stretching process has made me more aware of exactly where I’m numb in my chest.  Although I’m generally numb at the incision sites, I still have a ton of sensitivity in the middle of my chest and around my new breasts.  Also, because the tissue expanders are under my pectoral muscles, I can feel my muscles if I touch the top part of my new boobs (close to my collarbone).  I was expecting to be totally numb all around, so it’s comforting to know that I still have some sensitivity left.

After today’s fill up session, I worked a full day at the office before returning home to do my taxes.  I usually do my taxes as soon as I receive my W-2, but this year I have a shitload of medical expenses that I need to document.  I’m not done tallying all my out-of-pocket expenses this past year and I’m already up to almost $15K.  You read that right — my out-of-pocket share after insurance has paid its share totaled just under $15K last year.  And that doesn’t include all the incidentals that come along with battling cancer (e.g. buying organic meat, poultry, and dairy; buying paraben-free bath products and lotions).  As I sat at my dining table tonight calculating these expenses, medical bills and receipts strewn about, I listened to President Obama talk about health care reform as he delivered his speech about the state of the economy.  It was a surreal moment.  I haven’t had much of an opportunity to think about how my situation would have been different in a country with universal health care.  Those thoughts are mental exercises that I haven’t had the luxury to engage in while in survival and rebuilding mode.  But hearing President Obama speak tonight really got me thinking about how this process could be different for other women (and men for that matter) in my situation.  I was blessed to have had a successful fundraiser that funded a portion of my insane out-of-pocket medical expenses.  I was also fortunate to have a job and health insurance.  It was yet another sobering moment for me to think about people who do not have health insurance.  I got ill to my stomach thinking about how different the last year would have been for me if I could not afford the health care I received.  I also got ill thinking about how I’m going to come up with the money to pay my out-of-pocket share for my reconstruction.  For a brief moment I felt guilty for choosing to have my breasts reconstructed.  I wondered if it will really be worth all the agony and money spent at the end of the day, and I felt unjustifiably indulgent.  But then I snapped back to reality.  This may be my only opportunity to be “whole” again.  And I’m not going to apologize for jumping on this boat while it is still docked at the harbor.

President Obama’s speech was uplifting and made me feel a bit more educated about all the shizzy going down on Capitol Hill to attend to our ill economy.  It, like our health care system, is in dire need of an overhaul.  However, his speech also has me thinking more about the topic of health care reform.  This process can and should be easier for others in the future.

For today’s soundtrack I don’t have a link, but I encourage you to spend the money to download this track: “Mojo” released on Ash Grunwald’s Fish Out of Water.  I’ve been into blues lately, and this song definitely hit a chord with me today.

Feeling Like a Gas Station

Fill ‘er up!  Today was my 2-week post-operation appointment with Dr. Paige and also my first “fill up” session with his office.  Dr. Paige was able to get 50 ccs of saline into each tissue expander before completing my surgery a couple weeks ago.  Today his nurse, Dawn, filled me up with 100 ccs more in each boob.  I’m starting to see how this process works, and I have to say, it is very interesting!

First of all, I was amazed how well I’ve healed in just 2 weeks.  I still had a bunch of Dermabond on my incision sites, so only after Dawn cleaned off the glue did I actually see the incisions.  I don’t think I look any worse than I did with my mastectomy scars.  I continue to be amazed by the human body’s ability to heal. 

The filling process is similar to getting chemo through a port – each tissue expander has a port of its own, which allows the nurse to access the expander with a non-coring needle which will then allow her/him to fill the expander with saline.  Though a lot of information, the following link has comprehensive information about the exact type of tissue expander I have in me right now, how it’s used, and potential complications: http://allergan.ca/assets/pdf/M724-B_133V_TE_DFU.pdf.  Starting with my right boob, Dawn used a device to locate where the tissue expander port is located.  The port has metal in it, which makes it easy to locate where the port is located.   And yes, that means that I will set off metal detectors while I have these things in me.  Dr. Paige gave me a card with my tissue expander information on it to carry with me at all times so that I can explain to the lovely security guards at King County Superior Court and Division I Court of Appeals why my boobs keep setting off the alarms.  Dawn marked where the port is located and then proceeded to access the port with a needle and a large syringe filled with 50 ccs of saline.  She repeated the process with another 50 ccs and then moved on to my left boob.  Accessing the port didn’t hurt very much (I don’t have a lot of sensation in my chest area anymore), but the filling part of the process felt really weird.  The saline is a colder than my body temperature, so I could feel the saline being inserted into each expander.  I can also feel how much tighter my skin is after today’s fill.  One of my paralegals, Patty, commented today that I looked “fuller” than usual.  Obviously 100 ccs is enough to show.  It is, indeed, a weird process.

Dr. Paige then examined me and he seemed very pleased with the results.  I won’t have to see him again until Dawn is done filling me up.  I have 400 cc tissue expanders in me with now 150 ccs in each boob.  Just 250 ccs more to go!  I have an appointment next week to have another 100 ccs inserted into each boob.  Dawn tells me we will repeat this process each week until all 400 ccs are in each expander.   I asked her if I will be in any more pain with each successive fill, and she explained that usually the last fill is the worst, requiring some ibuprofen for pain, but usually not anything more than that.  Thankfully, because I started with only 50 ccs, my last fill will be 50 ccs only, which should be easier on my body.

Yay!  I’m totally excited to see my body transform into something I’m more familiar with.  However, this process is requiring a lot more restraint on my part than I had originally anticipated.  I’m on a super strict lifting restriction for 4-6 weeks — no lifting, pushing, pulling, or doing anything with my upper body that involves more than 5 lbs.  That’s no more than a gallon of milk or a large phone book.  Think about it — there are a ton of things that weigh more than 5 lbs.  Laundry requires more planning than usual, I can’t take out trash from the big trash bin in my kitchen, and I have difficulty opening certain doors in downtown Seattle.  I’m also on a driving restriction for 4 weeks, so getting around town and completing errands has required leaning on my friends here in Seattle.  I’m very thankful that my condo is so close to where I work.  I’ve been doing a ton of walking.

Which leads me to the absolute worst part of this process — I have been advised to refrain from working out for at least 4 weeks.  Dr. Paige explained that he’s not concerned as much with the jiggling around of the expanders as much as he is of my increased heart rate, which will increase swelling at the boob site.  Apparently, minimizing swelling as much as possible yields the best cosmetic result.  At 4 weeks I can start light exercise, and then at 6 weeks I can return to my usual workout routine (that doesn’t include tons of upper body work with heavy weights).  I’m going absolutely stir crazy not being able to run.  The weather has been divine by Seattle standards this time of year, and I’m getting more and more aggro watching all the people in my hood enjoy their morning or afternoon run in this great weather.  Soon enough.  Two more weeks.

Talking about running, I leave you with this for today’s soundtrack: http://www.youtube.com/watch?v=L-7Vu7cqB20.  I will also leave you with this track because I’ve been grooving on this today: http://www.deezer.com/track/carbine-744-520-che-guevara-T351885.

Sobering Moments

On Friday I had my annual exam with Dr. Rothblatt, my gynecologist. It’s funny how my exam fell exactly one year and one day after the anniversary of my diagnosis. He greeted me with a big hug and congratulated me on surviving the past year. He specifically noted that I was “glowing” and that he was impressed with my attitude. I responded by telling him that I think anyone faced with my struggles would need to have a good attitude. Dr. Rothblatt broke eye contact with me briefly, smiled, looked at me, and replied that not everyone has the same outlook as me.

After the usual routine of an annual pelvic exam, we had a serious talk about my risks of ovarian cancer, which I have conveniently put out of my my mind in order to focus on my reconstruction. Dr. Rothblatt reminded me that tracking methods for ovarian cancer, unlike those for breast cancer, are really crappy. I could have an intravaginal ultrasound on a Monday with results that indicate my ovaries are okay, but then by Friday I could have full-blown ovarian cancer. Also, Dr. Rothblatt recently returned from a conference during which some researchers presented evidence that indicates that cancer cells that cause ovarian cancer may actually originate in the fallopian tubes and not the ovaries, which throws a huge monkey wrench into the current tracking system we have for ovarian cancer. In the end, Dr. Rothblatt’s recommendation is that I have my ovaries (and now potentially also my fallopian tubes) taken out as soon as possible.

I’m still hopeful that my reproductive system will come back online and I will be able to have kids without having to use those seven eggs sitting in a cyrogenic freezer in San Diego. Again, I’m haunted by this notion of what’s “normal,” and my default mind tells me that a 32-year-old relatively healthy woman should be menstruating and able to procreate. However, the reality is that I’m carrying a bunch of genetic baggage and I should be worried about the risks of ovarian cancer. Ovarian cancer is much more deadly than breast cancer and it would be really shitty if I went through all the trouble of having both my breasts taken off, but I ultimately die from ovarian cancer. Dr. Rothblatt has suggested that if my reproductive system does not come back online within the next two years, that I have my ovaries and fallopian tubes taken out. It’s a really scary reality to face and it pisses me off that my cancer drama won’t be done after my breasts are reconstructed. It goes without saying that Friday was filled with sobering moments.

So for today’s soundtrack, I leave you with a sobering song: http://www.youtube.com/watch?v=7CbAjj80NIM.

Happy Anniversary

Exactly a year ago today I was diagnosed with breast cancer.  It’s been one whole year.  I still remember being with my gynecologist, Dr. Rothblatt, when he tuned out of the conversation I was having with him during my annual exam and instead focused on the 9 o’clock section of my right breast.  I remember every step of my diagnosis and treatment; every person who assisted me along the way; and every good day, bad day, and so-so day.  I remember all the “downs” — the day I received my diagnosis from the nurse who I had never met before, the day I called my Dad to tell him I had cancer, the messy break-up logistics with Alex, the day I realized that I would be forced to work full-time throughout my treatment, the day my hair started falling out full-speed, the week I had pneumonia, the week before my mastectomies were first scheduled, the first day I was able to look at myself in the mirror after my mastectomies and see the gruesome scars, the anniversary of my Mother’s death, and every day that I was reminded that my period has still not returned and that I may never ovulate/menstruate again.  I also remember all the “ups” — my fundraiser; Floating Woman weekend; getting confirmation from Fertile Hope that they were sponsoring my fertility preservation efforts; my first chemo treatment and realizing that it wasn’t as bad as I thought it would be; my last chemo treatment and realizing that, hopefully, I would not have to go through that crap ever again; the weeks after my mastectomies with the amazing care I received from my friends, including having my best friend from high school fly to Seattle from Japan; Halloween with all my friends after my mastectomies; Christmas break with my family; an amazing New Year’s; and starting the process of rebuilding my breasts.

As you all know, temporal markers mean a lot to me and today is one big fucking milestone.  A bunch of my friends surprised me today after David and I returned home after running a bunch of errands.  They all congregated in my condo (scaring the shit out of me when I opened the door), made me an amazing meal, all wore the pink T-shirts my crew sold for my fundraiser, and toasted me with champagne and wine as a final farewell to Karla.  I feel so blessed to have such an amazing group of friends.  I looked around my condo at all the people there and read/listened to all the great text messages and voice messages from people who couldn’t join us tonight.  The talk this evening was about the amazing year I’ve had, but didn’t want to dwell on the past.  Tonight I just wanted to sit back and enjoy my friends.  Allow me to get preachy for a bit on this one year anniversary of my life overhaul.  Take a moment to take stock of how amazing your life is and cherish it.  Give a shout out once in a while to the heavens to be thankful for all that there is to be thankful for.  Because cancer isn’t the only thing that kills.  You could die walking across the street.  You could die while attending a monster truck rally.  Shit, you could die while licking toxic glue from old envelopes to send out wedding announcements.  We don’t get to choose when or how we die.  But we do get to choose how we live.  And if there’s anything I’ve learned from this past year, it is to enjoy life as I experience it, to do my best to live a life of no regrets, and live the shit out of the life that I have.  So there.  Happy Anniversary to me.

Please don’t laugh at today’s soundtrack snippet: http://www.youtube.com/watch?v=67MIVKJAaOU.  I know, WTF, right?  But here’s the thing — this song always put a smile on my face when I was in high school.  I had a crush on a guy named Darren and I used this song as my mantra to get me in the mood to win Darren’s affections.  It was a cheezy 90s techno battle cry that to this day still makes me smile.

Post-Op Update

I have completed the first step of my reconstruction with no complications thus far.  I went under the knife on Friday under Dr. Paige’s care and came out the other end in pain and sutured up, but happy to have started this process.  It’s very weird to look down at or touch my chest and see/feel that there’s something there.  The skin may look shriveled at the bottom (right now the tissue expanders have only 50 ccs of fluid in them), bruised, and scarred, but I know that this is only the beginning and I am excited to see how my new boobies will look like in the end.  

One of the revelations I’ve had in the days after my surgery is how much better my body reacts to Percocet than to Vicodin.  I’ve been prescribed Vicodin in the past and have never tried Percocet.  Vicodin has been an effective pain reliever, but I’ve always felt mentally compromised and lethargic after taking it.  After my mastectomies, I was glad that I was not in pain but frustrated that the Vicodin would mentally knock me out.  Dr. Paige prescribed Percocet for me after this surgery and I have to say, other than a few initial minutes of feeling “woosy,” I am fully functional on Percocet.  It’s a bit scary how “normal” I am on this stuff.  I actually worked a bit today and will be able to work throughout this week as necessary.  I’ve been reminded to take it easy and to not stress out my body while in recovery, and I’ll have to be extremely cognizant of my tendency to push the envelope with this wonder drug Percocet in my medicine cabinet.

I’ve been blessed to have yet another good friend take some time off to take care of me during my first week after surgery.  My friend David just returned from his tour of duty in Samoa with the Peace Corps a few months ago and is in the process of relocating from Seattle to San Francisco.  He has graciously offered to care for me this week.  I can’t imagine how I would care for myself and do all the basic things around my house without David’s help.  It’s also been nice to have someone technically proficient caring for me.  My once-broken laptop is now fixed and updated, my new phone has been activated, and David is teaching me how to use certain programs to download music and videos.  I couldn’t have asked for a better caregiver right now.  It’s also great to be able to catch up with David about his last two years in Samoa.  He will say certain words in Samoan that I recognize (I went to a high school with a large population of Samoan students), and we’ll giggle here and there about cultural differences that he learned while serving in the Peace Corps that I’m aware of given where I grew up.

Another godsend is Jackie.  She stayed with David in the hospital waiting room during my surgery and also slept by my side in an uncomfortable hospital chair while I was in recovery the night after surgery.  As someone without a husband/boyfriend/partner, it has been really nice to have a friend at my side during these hard times.  And it’s a pretty good friend who can help you use the bathroom and help you back into bed at some god-awful hour of the morning.

Finally, a quick update on the photo showcase/contest that my friend, Troy, recently organized.  I won.  Go figure, I’m an easy topic for the theme “change,” but it took me a while to come up with something that I felt comfortable shooting and submitting.  I took a few stabs at trying to shoot my changes in perspective versus my physical changes, but nothing quite worked out.  Then, on the eve of my surgery at midnight, I was staring at a plaster bust that my friend Azur made of me prior to my mastectomies.  It’s been sitting on the floor of my bedroom since he made it for me because I have been trying to figure out where to hang it in my condo.  I brought over my large mirror and made a triangle with me, the bust, and the mirror.  Here is the photo I took that I ended up submitting to Troy’s photo showcase:

I titled it “Eve of Reconstruction.”  It really caught the essence of how I was feeling that night — my indecision, fear, sadness, and hope.  I think it turned out well.

As for today’s soundtrack, given my recent revelations about Percocet, I leave you with this: http://www.youtube.com/watch?v=wMD7Ezp3gWc.