CANCER: What the price of freedom?

Gentle Reader- 

I offer you an update: Today, I was able to do a drive-by at Seattle Cancer Care Alliance. The purpose for today's visit was to check in with my capable, kick-ass, and yes, somewhat huggable lung team. If you'll recall, prednisone was removed from my medication roster about six weeks or so ago...BUT, I was told to stay on its ugly half-sister, azithromycin until I was told not to take it any longer. I was warned that once this drug was removed from the line-up, that well, I could get sick again. And that the trick was to figure out just when the "right" time would be. And "SURPRISE!" there's no study or body of research that tells us definitively when that time would be...Dr. M wanted me to stay on this stuff until well into my 60's. Dr. Chang saw it a little differently.

As an aside, so much of this reminds me of dating in my 20's. So much angst, hand wringing, drama. Sigh! I am just too old for this shit. The difference though is that dating was never about life or death- even though I thought it was at the time. What did I know?

Well, today Dr. Chang drew the short straw and got me as a patient. And she decided, with furrowed brow, to remove the drug from the roster. She gave me a stern warning that should I get sick again (because, well I CAN), that I am to phone them right away to be seen. I told her joke's on her 'cuz whenever I get sick with this stuff, the protectors of the schedule will not let me be seen by my doctors. Instead they very abruptly tell me to haul my sick ass on over to the ER to be seen. There, I get to show my BE-HIND, by telling everyone within hearing distance that I'm a CANCER patient and that NO ONE is to touch me until they speak with my doctors. Works every time. It certainly makes the day a little messy for my doctors but I've learned to no longer care about that. And well, I then get to see my doctors. Circle of life, Simba....

So there you have it. I am now down two nasty drugs. I've shed some unwanted .lbs and am within 9 .lbs of fighting weight. To say that I'd be unhappy to get sick again and thrown back into the drug den would be a huge understatement. HUGE. 

And yes, in a way I feel free. Yet, oddly I don't feel empowered. The price of freedom at this point in my life is uncertainty. And one of the things I enjoy about getting older is all of the life experience I have under my belt. I can minimize uncertainty about many things; and yet I must still stretch to welcome uncertainty but on a whole different level. 

Sure, with grace and wisdom by my side, I will ride this wave. What choice is there, really? And I have enough experience to know just what to do should the occasion for illness arise again. I will show my ass. I will get my way. I will live another day. 

Ah! Freedom!

CANCER: Happy Anniversary

Gentle Reader-

It has been some time since I've updated this blog. And you wanna know why? No, not because I've been sick. Nor have I grown tired of writing about my journey. Instead, it's because my ass has been busy having fun. That's right. For the first time in many, many YEARS, I found myself in the position to say emphatically, "NO" to anything that didn't smack of fun. And, well where did that leave me? 

The celebration of my second anniversary. 

Today, I get to sit back and enjoy two years chemo free. I know...there are literally dozens of little anniversaries when it comes to my cancer journey- the day I found out, the day I started chemo, the day I finished radiation. But today friends, I celebrate that milestone that is so permanently etched in my memory banks. Today, two years ago, I sat down for my final chemo experience. Yep, it kicked my ass; damn near killed me but I'm STILL HERE! HA-HA-HA!

And you know, it's hard not to want to rub it in to, oh, I don't know- cancer's face? Like cancer has a face...I wish. 

So, today you'll have to forgive me if I want to demand a balloon bouquet or better...Yes, a parade- complete with floats, a band or two, and sure a couple of ladies tossing batons.

Of course, I know better. No. Today, I will attend meetings; edit documents. I will head to a cool play date. And take a kid to tutoring. I will cook dinner. No real party for me. And yet- I celebrate because this is what life is all about.

Let me catch you up:

I was prepared to write a blog titled: Pain Club. And there are many parallels with that famous movie of a slightly different title. Because the first rule of Pain Club- and there are many- is you don't talk about pain club. Apparently that's what happens when you take opiods. You're not supposed to TELL people you're taking them because they will STEAL your opiods. Man. With friends like that...

But why pain club? Well, as I mentioned before I developed lymphedema in my left arm. No one really has a clue why. So, for now we're going with: Scatter effect from over radiation. It may not be accurate, but it fits. And with that, comes pain. My arm and fingers often feel like they are on fire. 

And living with that stuff- while not debilitating- does suck. So, I started on a quest for pain relief. And, it lead me down some very interesting corridors. One was a conversation around taking methadone. I kindly declined. It is highly addictive and it may interfere with my bowel movements. PASS.

I also talked with a doctor who offered up anti-depressants and visualization therapy. The problem with the first was it would cause me to gain weight and decrease my sex drive. No and emphatically NO! The Hell? And sorry, but I just don't have time to visualize much beyond getting laundry done and kids shuttled around. Oh, and there's that pesky job of mine.....Again, not a good fit.

So, where does that leave me? I still have pain. It is being managed through higher compression garments and massage. Eventually I'll move over to acupuncture. But, in the end I realized it is all part of my "new" normal. It isn't debilitating. And clearly, I'll survive.

Also, I was taken off of prednisone. Funny. When typed, the word comes up as misspelled. And the option offered is "prisoner." And that is precisely how I felt. For just under two years, I was on that awful, life saving drug. It made me moody. I gained 15 lbs. But it kept my lungs working. It was with the help of the patient, kind and brilliant research, Dr. David Madtes and his team at SCCA, that I am now successfully weened from that drug. 

I am grateful. I AM losing weight. So in a word: Awesome. 

And a word about fun. Cancer is anything but fun. I don't care how many pink parties are thrown, ribbons worn, or marathons run. It is NO FUN. And it has been quite a journey to get back to decent, if not good, health. 

And along the way, I've certainly lost plenty of friends. And yet, I have also made new ones. And these friends only know me post disease and treatment. And, when spending time amongst this band of merry bandits, I am seen very, very differently- like it never, ever happened.

And I'm not sure how I feel about that. 

I never wanted cancer to define me. Yet, it shapes how I see everything in life. Everything. 

One friend in particular, has told me- "You know what? I know this happened to you. But, here's the rub. Nothing bad ever happens to those I am closest to." 

Boy, is that a tall order. I really would hate to be the person to blow that kind of track record. Honestly. (Always the Midwesterner- Don't want to put ya out...)Yet, I know I could. And it would be devastating for both of us.

I close with this: on this second anniversary, here's what I want: to live a long, healthy life, where I get to keep the odds forever in MY favor.

Thank you for reading.

CANCER: Summa cum laude

I LOVE this time of year. Graduation time. And, well ever since I graduated from college, I've tried to somehow find a way to experience graduation again and again. (I did when I obtained my Master's; but nada since...) As I look back over the highlights of my life, it truly was one of the first of many "best" days of my adult life.

And today, well I think I graduated again. That's right folks! I have made it to the 1.5 year mark in post treatment. I have graduated from doing 90 day checks to 6 months. Rather than ever 6 months, I will have CT scans annually. According to my blood work and those fancy, smart doctors, my cancer still sleeps and I am healthy. I am alive. The voice in my head keeps saying: "Not today. Today I live." And well, live I will. 

But today also made me think about all kinds of ways we experience life's milestones. I was sitting in Seattle Cancer Care Alliance- the place where just about every kind of human being goes for cancer treatment. (I mean- there were so many different languages being spoken that I honestly thought I was at the damn UN.) There were also so many different ways culture was being demonstrated, that I forgot for a minute that we were all there for cancer, so agog I was at watching it all- the tiny Hmong woman sitting in her chair with no shoes, the singing African woman, the chatty Ukrainian young women in their glittery jeans; and the African American women with their braids (ooohhhh....just you wait, sistas!) 


But I digress...

I also saw a man being wheeled out of the place. He was sitting upright in his wheelchair, apparently sleeping- head cocked to the side. Well, at least that's what my mind thought it saw. It wasn't until I saw his caretaker (wife?) walking slowly behind him (and the EMT tech), eyes wide with terror, fighting back tears, hand held over her mouth to stifle the apparent scream she wanted/needed to get out, that I realized, "Uh, that's not a nap. That dude is dead." Yes, he graduated onto that next phase of life- death. And his partner graduated into becoming a widow- and all that comes with that.

SCCA is no joke. It is not for the weak. Yet my ass always jumps when a code blue is announced. My brain immediately does a quick scan to make sure the code wasn't called for me. Honestly, I forget...

So no. This week many of us won't get our official, university consecrated, black robes and collars. And many of us won't feel the same kind of triumph that is usually associated with the word "graduation." We won't get to add any fancy titles behind our name- well except for maybe: Survivor, deceased or widow. But that still counts.

And for me- not today, cancer. Not today.

CANCER: Only the blithe die young

So the other day, I was rocking out to Billy Joel with my kids. I'll readily admit that I am a big, big fan of his. And honestly, I think all children should be well versed in his music. That might be a bit much....But honestly, no swear words, no obvious misogyny?? Anywho, the song Only the Good Die Young came on. I'm singing my little heart out, keeping up with my man. (NOTE: I was informed that singing loudly was good for my lungs- makes 'em healthy and strong!!!) But, I was stopped in my tracks by the super sad face on my 12 y.o. With eyes cast down, he mumbled, "I don't like this song. You're young." Quickly I replied: "Yeah, but I'm not that good." 

And so it goes...

It's true. I am young. And for the most part I'm good- but it starts to break down right about here. 

You see, I have a lot of doctors on the payroll. A LOT. And I've developed a sort of irreverent disdain for all their "college-y book learning." Perhaps it's because I've heard one time too many: "Well, we don't know what is wrong with you." or "What do you think we should do?" or was sitting around one time too many, so fucking sick from their prescribed cures. Anyway, a while I ago I caught on to their game. And much like when I reached adulthood and grew to see my parents as humans, I have done the same with my doctors. 


Sure they know a heck of a lot more than I when it comes to disease. But cures?? I've come to think that a lot of that is knowledge plus a great deal of dumb luck. I mean, if they're so smart, how come so many of the good are still dying young? Ok, I'll back down a little bit from that, as we have made tremendous progress with curing disease that once felled us. But I do believe that the more we know, the more we have to learn. 

Can I get an amen? 

Today I had the fortunate opportunity to meet up with my SCCA pulmonary team. And let me tell ya, Dr. Madtes and his support staffer, Maria are wonderful human beings. We have what I like to call, a very creative relationship built upon respect and tolerance- more on his team's side than my own, of course.

And here's why: I've decided to play pharmacist and pulmonologist in my own home...It takes some serious creativity on my part. But I think I play these roles nicely. After learning of the status of my crappy bones: "They're weakening due to the prednisone." And my boobs are just getting out of hand. (DDD, really?) Well I decided to speed things up a bit by tapering, weaning, whatever the hell you want to call it, a little faster than the team planned. You see, Madtes, et all wanted to keep me at a higher dose through summer. Whereas I agreed to stay on the drugs, but at a much lower dose. (See? Creative respect at work here...) The last two meetings with them, I've informed them of my jumping the gun. And goody for my dumb luck, I am doing just fine. 

Now I don't dare get too cocky about this. That's all I need is for my lungs to crap out on me while also being required to eat crow. That is just too much multitasking for this little lady. But I can't help but feel just a little bit smug about my progress. I shared this with the team. They gently smiled and reminded me, gently, that I still have a ways to go. That I need to still take time. That it just ain't over, till it's over. Yeah, yeah...I heard them. I am slowing down. I am following their lead- for NOW. I see them again in mid-July. And who knows just where my life experience earned MD degree will lead me?

Also this Thursday I go back for my regular check for cancer. This time they just want my blood rather than a CT scan. And normally I just shake these appointments off with a confident: "I got this" attitude. But, something is different this time.

Perhaps it's because I am suspicious of happiness? (I've been oh, so happy these past few months.) Perhaps all of those months of sitting in cancer group and listening to others' anxieties about their check-ups have finally gotten to me? Perhaps I've lost too many friends too soon?? I don't know. But unfortunately I am no longer that blithe "it-ain't-cancer-till-it's-cancer" chick. And I am just so disappointed in myself. 

I liked her a lot. 

But I now realize that perhaps there was a short-coming to that kind of insight. Maybe, just maybe, cancer has taught me a little bit more about fear than I realized? Trust me. I fear very, very little. I think there's like two things on my fear list...And the shit that would have felled me two years ago I can now handle before breakfast. Yes, I know...fear is unavoidable. But it doesn't cripple me. And yet there's Thursday to tackle. 

I have no clue what the tea leaves will read for me. I am no longer traipsing through the world of post treatment blithely trusting in my body to do the "right" thing. But I know this much. I really am not that good. So perhaps that will buy me some time?

CANCER: There WILL be complications

Yesterday I received the sad and deeply troubling news that a friend and colleague of mine succumbed to cancer treatment-related complications. I knew she was sick- like really, really sick, back in late January. My hope was she would pull through- because well, it wasn't cancer sick, right? And, also selfishly I wanted and needed her as my friend. We were soul sisters; neighbors, young-ish, professional, single ladies, parents to beautiful children who deserve their awesome moms; survivors who beat cancer, and had a whole lot of life in front of us. We made plans.

Look, I'm not even going to lie to you when I say that in a way I am accustomed to sick and dying people. I know what it means when someone says they are stage four pancreatic cancer. There's no sugar coating it. There's no- "Oh, you'll beat this!" because everyone knows where the road will lead. However, in the case of my friend, she had beaten her cancer. She got through treatment. She was young. She was vibrant. She was the mother of an amazing young son.  She was going to live a nice, long life. Her cancer wasn't coming back. And I even encouraged her to get a second opinion aside from the ill-informed wack-o who declared otherwise...

We would meet on occasion just to simply bitch about the havoc cancer treatment caused in our lives. Me bitching WAY more than she; as she was of a gentler, kinder breed of human...Of course, we knew to laugh it off- because we also knew it could be so much worse. We knew that for whatever reason: we jumped high enough, our blood was red enough, the doctor attended the right medical school- you name it, that we were the lucky ones. It was this very friend who encouraged me- in her quiet, sweet and ridiculously gentle manner to carry tissues to handle the constant nose drainage left over from chemo treatment. She was the one who, through her example, encouraged me to try out online dating again. She said: "Yeah, it took me a while to meet my partner. But oh, when it clicked, it was just so worth the wait." She inspired me. She bravely stated that because her cancer was behind her- and she was never getting it again, it was time to grow her hair back out into a huge mane. 

And now she is gone. 

Maybe her passing didn't happen the way I remember it- in the blink of an eye-- A text at the end of January saying- "Hey, let's re-schedule. Today isn't a good day." Maybe she was sicker for longer than she let on, as she was deeply private about her health. Who knows?

But what I do know is this: this one is unlike any of the others. This one causes me to want to curl into fetal position and hide from the world. And the reason for this is because ultimately it reminds me just how fragile cancer treatment makes us. It reminds me of my very own vulnerability. And without her in my life, I have to stare this one down alone.

The cancer doctors are totally kicking ass when it comes to actually curing cancer. For many of us, it is no longer a death sentence. This is the result of billions of dollars and billions of hours  dedicated to figuring out how to beat it. For that I say, thanks!

BUT- you know....what you forget to ask; and what those very smart doctors forget to tell you in their honest-to-goodness attempts to make you cancer-free, is that well, there may be some "complications." And sure, as a patient, you just want the cancer out of your body- damn the complications. Hell, I wasn't listening to that part anyway....(that's why it's good to record these appointments on your I-Phone because your friends and family will miss that part too, btw...) 

But once the complications start to rear their nasty and sometimes lethal little heads, I will hear from the doctors: "The devil is in the details..." "Not every patient reacts the same way." And, in their defense, that's perfectly true. And honestly, the doctors are humans and have no way of predicting the future. 

In the best case scenario I get a doctor who says these things with compassion and heartfelt concern. But does that really matter when you find out that despite all of the hell you went through to beat cancer, the prize behind door Number 2 is death anyway?

Today during my final PT appointment at SCCA, I told my therapist about my friend's passing. As I'm huffing and puffing on the treadmill, while fighting back tears, I explained to her that despite all of the exercising, lunges, crunches, you name its, that it really is out of our hands. The complications are so beyond something a brisk walk on a treadmill can fix. And really, all we have is hope and luck. And because she has seen so much in her career, she did the right thing. She nodded her head in silent agreement.

My friend was certainly hopeful and deserving of a full recovery. The complications were just bigger than what her human body could handle.  She will continue to inspire me to bravely hold on to hope that I will beat my complications too. But I am not positive I'll ever be able to get comfortable with this level of vulnerability. 

I will miss her.

CANCER: The kids are alright

So, I've been sitting on this one since Monday; and am just now getting around to sharing these thoughts with you. A funny thing happened this weekend- I flew to Toronto for a wedding. The wedding of my best male friend. And here's what happened- I felt like absolute HELL. From the fucked up 12 hours it took to get from Seattle to Toronto; from landing at some crazy gate L in O'Hare and then not knowing just where in the Hell I was supposed to go from there; to finally arriving THERE only to be snapped at by some shitty shoe wearing gate attendant that I was to simply "read the board" to confirm my location. (To which I replied: "Hey, if the board had the right location written on it, do you really think I would have taken the time to bother to talk to you?" Yes, the asshole was implied.) And then being cut off by every WHITE man in the airport who apparently had someplace important to be...I mean, really. I was there FIRST and I'm a lady, dammit.

I really don't know why I worried about getting my cardio in on Friday. Because seriously, I walked the length of the entire Great Wall. And don't even get me started on the arrival in Toronto. JESUS. Who designed that asinine airport? Seriously...the walk from the gate to the terminal was like some scene out of Amy Tan's film The Joy Luck Club. Old people and kids were just falling by the wayside. And really- in my defense, I held up rather nicely- or so I thought- as I hauled my ass from here to there. 

Wedding stuff aside, things fell apart big time for me on Sunday. I was about 2.5 hours into a five hour flight when I realized my heart was pounding away in my rib cage and I wasn't breathing well. And you know me- I assumed it was, well gas. I had eaten some pretty amazing food in Toronto. Seven course brunch. Dinner at a place called "Hey Meatball" followed by some killer crepes. Let's just say there wasn't a lot of "roughage" in the diet. But I DID exercise while in the hotel- because let's be honest- it was STUPID cold outside and I don't really like TV that much. 

So, I did what any normal person would do. I got up and used the restroom. I walked the aisle. I did all kinds of things- because it dawned on me: "Uh-oh, I may need them to land this damn plane if I can't get this shit under control." And honestly, I just didn't want to be "that girl." I also looked on the plane map and saw that we were over Fargo, ND. And I just don't know much about their emergency facilities. Do you? While struggling to breathe, I did manage to get angry at myself for not catching this shit sooner, cuz then I stood a chance of getting an emergency landing in Chicago.

I'll readily admit it. I was scared. I kept checking my fingernails to make sure they hadn't turned blue. Because that was the deal I made with myself- if my nails turned blue, I would call the flight attendant and ask them very, very kindly to land the plane. Yes, even in Fargo.To pass the time, I knitted a whole hat. Knitting calms my ass down. And it worked. It took my mind off of my struggle to breathe.

Obviously, I made it home. And once safely on the ground, my breathing returned to some semblance of normal. I felt better. Not great. But certainly better. 

Monday I was still a bit rocky. But I attributed that more to jet lag than anything else. My lungs were still burning a bit. But again, I figured it was because I put them through a bit of Hell. And my lung team confirmed that honestly, this type of thing will happen until I get healed up. Apparently to the normal lung person, the crappy cabin air they fill the plane with is fine. But for more sensitive folk like myself, we will basically asphyxiate. You know, that would have been good information to have going into all of this, don't you think? Doctors make me crazy. They really do. And I told them that- and didn't bother smiling either. She felt bad- and I think she felt bad for a couple of reasons.

1) She is empathetic. She knows how much this sucks.
2) She pities me. She knows what the road to recovery- if there is one at all- looks like.

So we talked about the future. She told me that if the steroids don't heal me up, then it looks like I'm on the road to something called fibrosis- for which there is no cure. Now, let's not get ahead of ourselves here. I have no reason to believe I won't get better like the last two times. But it is curious to think that I may find myself praying for a well-timed motorcycle accident- to get momma her new set of lungs. Morbid even. But I figure as long as there's places like oh, I don't know, Florida, where folks don't wear their helmets, I stand a good chance of coming out on top...So, there's hope. 

3:30 PM arrived finally. I picked my kids up from school. Lungs burning and everything. I still had a shit ton of responsibilities in front of me. And I looked over at my boys. I explained very patiently: "Hey, I'm having trouble breathing right now. So I'm going to go take a nap for about 30 minutes. Then we'll tackle everything else. Don't kill each other or burn the house down."

My oldest son replied: "You know mom, if you said something like that to anyone else, they probably would insist on calling 911. Instead we just say: "Alright. Have a good nap." because we've been down this road with you before. We don't panic." 

Yes. You see. The kids are alright.

CANCER: What a difference a date makes...

Lung update is that well, they flunked. AND more importantly, I FLUNKED them. But there was some interesting twists and turns that got me to this moment...

Last week I started off pretty happy,  as already I had dropped 5 LBS from the prednisone taper. That was getting me back in the zone of my normal weight range. (Old girl in the MD office tried to add a .4 to the end of that number...I called bullshit on that and told her to round that shit down like we learned in grade school. She did. AWESOME!) But that happiness was short-lived....

Last Wednesday the good Dr. Matdes phoned to let me know that I needed to jump back on prednisone, as the lung biopsy showed no infection. However, instead of pumping me full of all that crap, Matdes is taking a different approach. He's putting me on only 20 mgs of prednisone with a very small antibiotic chaser. Apparently when you mix prednisone with certain antibiotics the prednisone is more effective- but at a much lower dose. For that I say: thank YOU, because my poor body could use the break. But there was a catch. He asked me to hold off on taking the prednisone until Friday, because see, I was scheduled to take a lung test at 10:30 Friday AM. He wanted me drug free to allow us to establish a base line. Now of course, he DID say that I could take the drugs earlier if necessary. But you know me. I'm a BOSS and was all- "No...I GOT this. I can wait."

Now you KNOW I know better than that. And of course, I woke up Friday morning- literally panting like a dog because I couldn't get enough air into those stupid little sacks. I felt like one of my kids was sitting on my chest. They weren't. I checked. So, I did what any rational divorcee would do- I phoned my ex and asked for a ride to the ER. 

Now look- there's a reason that dude is my ex. He literally drove me up to the doors of the ER- slowed down juuuuuuust enough for me to hop out and sped outta there like his ass was on fire. I wasn't the least bit concerned because well, my primary issue was breathing. And I figured I'd find a ride home eventually.  (I did! Big love to Sharon Carroll and Laurie Coaston, btw!)

Due to my change in line-up, I now go to the UW Medical Center for my care. And their ER docs are so smooth! They took one look at my file, realized WHO they were dealing with and just let that shit flow. They figured out that I'll be a regular. They trust that I know what I'm panting about. And they know to call the big dogs in right away because shit is SERIOUS. They don't guess. They don't speculate. And more importantly- they don't waste my time. So, I got to hang out for about five hours. The lights were lowered. I was handed some oxygen and some microwaved macaroni and cheese- and left in relative peace. Eventually Dr. M was tracked down. He issued some orders. I followed them and was sent home on my own recognizance. 

I am back on the steroids. Due to the lower dose, they aren't working as quickly. But I certainly have some more pep in my step- and cannot sleep for shit. Oh well.

But WAIT- I learned something else about all of this last week.

After dating this dude for about three whole weeks, he went in for the kill. He requested that I commit my dating self to him and only him, remove my online profile, blah, blah, blah....

And wouldn't you know- the very next day he broke up with me- via an email? Not just any email either- a SIX PARAGRAPH email detailing all of my failures and short-comings, not the least of which included my cancer. For REAL! His concerns- and really I got bored so didn't read the whole thing- stated something to the effect of: "Will I need to sit on the couch with you every weekend when you're sick?" And "What happens if you get cancer again? I'll need to say goodbye to you too soon and have to look for a new partner." The HELL? I was surprised and a little bit hurt. I mean- plenty of people told me they couldn't handle my disease when I was actively going through treatment. And I got that. But, I was blown away by someone predicting my future. And more importantly, betting against me. 

But I digress. That guy was an asshole. And it was super easy to send him on his merry way. 

However, there was another man in the ether. After taking a rest from his little emotional trip (WHAT? DATE? I've been single for five whole years...? What is this black magic called commitment??) he resurfaced. And I was actually pretty happy about it all. Because well, he's kinda special. And let me give you a little glimpse into this one. 

While chatting, he saw my lymphatic sleeve poking out of my shirt. He remarked: "You know, that sleeve is kinda like your badge of success. It shows you beat it. You earned it. You're a bad ass." Now, I had never in my mind thought of it like that. It's more a pain in the ass to have to wear. It serves as a reminder of what I underwent. In short, I never took the time to feel empowered by it. However, this guy, (who by the way, in no way defines me) sees it so differently. I don't lose any dating points because of it. If anything my status is elevated. Now, of course I have no idea what any of this will mean or where it will lead. And well, who cares? He loves steak and so do I. So, I'll hang in there...

But I guess I blog all of this to say- human beings will continue to surprise the shit out of me. And for that reason alone I think this makes life worth living.

CANCER: Let the games begin...

Ok- it been a while since I've updated. And the reason for this is a simple one: there has been absolutely NOTHING to update you with. Well...until now.

To catch you up, at the end of 2013 I broke up with my oncology/pulmonary team. And rather than see it as a sad thing, I decided to treat it more like a team re-building exercise; you know- like the NFL or pro baseball. And really it's the same thing: the process involves many men, lots of money and some crappy one-sided negotiations.

Ok, it's not that bad, as I do love my new team at Seattle Cancer Care Alliance.  But since the word "cancer" is in the title, they tend to look at my patient status in a very different way. While at Swedish Issaquah, I was one of a very FEW patients. And I enjoyed all the privilege that came with it- considering it was cancer that brung me...Contrast that with SCCA; which honestly is akin to the Greyhound Bus Station of care. I am one of HUNDREDS of people with cancer. The place is literally CRAWLING with sick people. And let's be super honest, given how awful cancer is, I have no desire at all to be treated special there. Special treatment at SCCA translates into "really, super, scary" sick. That place serves as a sobering reminder that it can always be worse.

Now, new to the tribe is my amazing, and ridiculously thin physical therapist: Carol. She and I meet up once or twice a week, where she drags my reluctant ass through exercises that honestly, a 24 month old could do. Me? I end up a hot sweaty mess, in need of a shower. This whole PT thing is NO JOKE. Steroids have taken their toll on all of my muscles that radiate from my"trunk" and has caused them to basically atrophy. This basically means flabby thighs and wings for this little lady...And let me clarify, there's a difference between the prednisone that I'm on and the anabolic steroids that shrink your sexual organs in exchange for huge muscles. NOT THE SAME THING. And while I may have flabby arms and thighs, I can ASSURE you, everything else is in decent condition. Silver lining!

Anywho- You should also know that Carol has these HUGE blue eyes. And I'll readily admit that as much as I want to shirk my "homework" in exchange for a nap, I just cannot lie to her. I CANNOT DO IT. So, like the good Catholic girl I was raised to be, I endure the torture of PT and the homework all because of guilt. Carol also mentioned in passing that it will be really, really hard for me to build back my muscle mass while still on prednisone. Of course, this left me to ponder just why in the HELL am I doing all of this? I'm sure there's a good reason in there someplace...And well, insurance is covering it. I don't dare ask anymore.

I also got my 120 day check up. The good news is I have NO cancer- anywhere. So YAY!!! for that. The bad news is my stupid lungs showed "infiltrates" again. Sexy Dr. Shustov (seriously, I have GOT to stop thinking about him in that way...) was "unimpressed" with what he saw on the scans. Now, since this is my THIRD time to the lung show (and only his first go-round with me), I told him: "Oh, just give me a couple of weeks. I'll blow your mind." Again...was that too much? See? I cannot help myself. He is just SO hot that everything that comes tumbling out of my stupid mouth sounds like a proposition. EVERYTHING. It's sobering when he starts talking about his wife. Right. WIFE.

Ok- back to lungs: In an effort to get off of these dumb steroids, I managed to convince my lung team to reduce their original 180 day taper to 90 days. My justification was: "Well, if my lungs crap out again, we'll find out even sooner." Of course, my doctor asked: "UM, so Yvette, remind me of what is it that you do for the UW?" "Get shit done." was my reply.

Now, that's some big talk considering I truly believed I would do just fine. I trusted that my lungs would be good team players and come through for me. Apparently I was wrong. And I suspect the debate will begin again. Already Shustov has declared it an infection. I called bullshit on it- and wasn't flirting either...And so he is now bringing in the lung team to also weigh in. 

Rather than worry about the fate of my lungs, today I managed to shimmy into my favorite yoga capri pants. Did my 20 minute treadmill warm up and got through Carol's "work out" regime. I DID call SCCA to chat with nurse Beatrice per Shustov's instructions to get some plan in place for my lungs. And now the clock starts to run. Do I continue the taper? Do they up the steroids and have to undergo that whole process again? Will they increase my dosage of my beloved Ativan to compliment the inevitable sleeplessness that comes with steroids??? 

Who knows? All I have to say is: LET THE GAMES BEGIN. 


 

CANCER: New Balance

Hi Friends!
 
I recently made a discovery- New Balance tennis shoes. I know...maybe that's nothing exciting to report to you, gentle reader. But truly this discovery blew my mind. And here's why: those damn things are so freakin' comfortable- and CHEAP. I now understand why so many people run around in sneakers. Damn. 

I also needed to find something I could wear that was stylish, comfortable and wouldn't cause me to break an ankle due to my new crappy fragile bone status. And, New Balance sneakers look cute with my work gear. At least according to J. Crew they do...(oh, don't worry! I still have my 4 inch heels. Those aren't going anywhere...)

But wait! After purchasing my first pair and because I'm such a shoe freak, I went online to search out even more New Balance options. And, on the company website, I learned you can customize your very own shoe. WHAT THE HELL? How did I not know about this? I LOVE shoes. And, well my affection has only grown knowing I can actually design my own footwear. Someone really needs to call Prada. 

You're probably wondering just why in the Hell I'm blogging about some stupid sneakers- and more importantly, what does this have to do with cancer? Fine, I'll tell you. 

Applying my creative juices to this task, when it offered me the chance to personalize my shoes by adding some 8 character (max.) name, slogan, etc, I JUMPED! Initially I wrote BAD on the left shoe and BITCH on the right shoe. I thought that was genius, up until I realized that probably wouldn't go over well when I rock these at work. Maybe a little unprofessional? 

So I took a minute to think about what I really want the world to know about me. I mean, isn't that the whole point of personalizing something? And while indeed, I am one BAD BITCH, I realize people figure that out within the first 30 seconds of meeting me. So, no need to put that message on my feet, right?

So, I thought; and thought; and thought some more. Then it dawned on me: SURVIVOR. Eight simple characters. Unoffensive. And the truth.

Now, to date I have shied away from calling myself a survivor. It is just such a powerful word in cancer world. It's a privilege. It's scary. It's a ticking time bomb for many of us. And because I have had such a tremendous journey both during and post treatment, I haven't seen myself as powerful. I mean, check it out- my lungs are a hot mess; my bones are weak; and thanks to the crappy steroids I am STILL on, I have a gut that rivals Homer Simpson's. Unlike Homer though, I cannot credit it to donuts and beer. 

But through it all, I'm still here. And I have no plans of leaving anytime soon. And that means I am surviving. And fuck it. I'm wearing shoes that tell that story. They should arrive by Friday. And I cannot WAIT to get them.

Happy new year!

PS- I also overhauled my entire care team. I am now a patient with the Seattle Cancer Care Alliance. To date, I have met with my hottie oncologist- Dr. Shustov- who is really pressuring me to give up Ativan. (Fat chance, buddy. That shit should be in the drinking water as far as I'm concerned...), I hook up with Dr. Madtes- pulmonologist today and Carole, my PT specialist on Friday. 

I'll keep you all updated on my progress with my new team. I'm looking forward to what lies ahead in 2014. I hope you are too!