Dear Gentle Reader
On Monday, I experienced a break-up. You know, with two divorces tucked firmly under my belt, and too many non-marital relationships to actually count (I'm including high school and college, ya'll), you would think I would be better at this. But surprisingly, I am not...
I knew our meeting would be hard. A good friend whose child is a cancer survivor told me how she cried when her child was released from oncology care. Cry? Me? It's not my go to. But, I remained open to that, because well...why not?
I had a hard time sleeping the night before. And I woke up with a distinct eye tick and an increasingly upset stomach. I wisely skipped breakfast. Returning to Seattle Cancer Care Alliance for my follow-ups were always scary and stressful. And this visit was no different.
He was late for our meeting. He was ALWAYS late though. So, nothing new there.
He breezed in with a warm: "Hello beautiful." And this time, I was irritated. I thought: "Beautiful? Does he mean that or does he say that to all of us?" And then I immediately felt ashamed. He's a wonderful human being who faces some ridiculously hard stuff day in and day out. And yet for me, he was able to be so upbeat and positive.
"Well, it's been five years. How are you feeling?" he asked.
We talked about the past five years. We covered the remaining, nagging side effects of treatment. I told him of some follow-up I'd like. And then we got to the conversation about our "future."
"You do know, given the treatments we put you through, you are at increased risk for secondary cancer?" He followed up with: "But, you know the risk is still really low. Whereas the risk is like .03% for the general population, yours is more like .06%"
I laughed to myself about that...You see, reader...I wasn't falling for that old chestnut. Because, when you get a cancer diagnosis- risk is meaningless, as your diagnosis is 100%. It's not like I only had .03% of cancer, right? And it's not like I had .03% of treatment.
"...and since you're at five years, you can decide how to manage your care. You're in remission."
I was told that I could continue seeing him as my oncologist on an annual basis. OR, I could have my GP manage my tests on an annual basis. And if I needed him, I could always call him.
And in true flashback mode, I remembered at one time when I was the sickest patient on his roster. I was always rushed in, cutting the line of less sick patients. And I remembered being scared out of my mind.
And I landed on the decision to break up.
You see, I know there are others who need his care, his kindness, his expertise way more than I do. There are others who need to go first. So, with that, I gave up my place in line.
My peace of mind is firmly intact. I suppose I could spend what ever remaining days I have on this earth in constant fear that this disease will return. It might. It might not. Cancer has taught me that death is way closer than any of us wish to think about. And, I'm cool with that.
But for now, it's over.
He looked up at me and said: "Well, it looks like we're breaking up. And now, I'm gonna hug you." And he did. Three times (!) I thanked him- and it felt so inadequate. "Thanks, man...You...um...saved my life..." So dumb...And as my friend correctly predicted, I cried.
So, to you, the beautiful, brilliant man, Dr, Andrei Shustov, I bid you a fond farewell.
Honestly, it's not you. It's me.
Dear Friends-
It has been a good TWO years, since I bothered to blog about cancer. And well, that was for very good reason. You see, I am one of the lucky ones. I am in remission.
Hell, yes. That's right...RE-MIS-SION. BUT WAIT...There's more....
If anything I've learned about cancer, it's that this is an unshakeable beast. Hardly a friend. More like a really shitty house guest that simply refuses to leave, after eating all yo' food, crapping in your toilet, and eventually sleeping with your spouse, after seducing your teenage son...
That kind of guest.
And while my lymphoma is slumbering away in remission land, I was pulled back into the clutches of this ruthless bastard by way of a kind woman named Emma Thomas, just last week. (it's always the nice ones...)
After a standing 6 month blood work up with my amazing GP, Dr. Philip Capp (honestly, I know of no man who pulls off a shaved head and clogs quite like him...TOTAL G!) we had a discussion about a rather sensitive part of my female anatomy- my boobs.
Without a hint of irony, he and I talked about my girls. Specifically how lymphedema has wreaked havoc on my left one. As a well-endowed lady, (ahem,32 DD) I am at odds with my undergarments. No longer able to rock those amazing underwires due to lymphatic drainage issues, I am at a loss for how to support these lovely ladies. And I am in pain. ALL-THE-TIME.
After four years of this madness, I have resigned myself to breast reduction surgery.
I KNOW...Such a radical solution to a seemingly innocuous problem. But trust me when I tell you, there is nothing small or innocuous about this problem. NOTHING.
So, Dr. Capp sent me off to the Swedish True Family Women's Cancer Center, who would determine my fate as a breast reduction candidate. And that's where I met Emma.
Emma is an ARNP. With a brisk, purposeful stride, she walked into my exam room bearing many sheets of old skool college lined loose-leaf paper with actual notes on them, and gave me a firm handshake.
She started off by saying: "After reviewing your files I have seen you have quite a history with cancer." And folks, I kid you not- she actually read the damn files....She threw all kinds of Yvette, cancer specific data at my ass. My head was reeling. I mean...who WAS this woman? And why was she so well prepared? Who DOES that shit anymore?
Annnnddd, while my head was spinning...she followed up with: "So, you know...given your history and the fact that you had radiation of your chest wall you KNOW you're at greater risk of getting breast cancer, right? They told you this, right?"
THE HELL?
Ok, that's not fair. I DID know that. But, honestly, I kind of forgot about it. Just like I forget about all the other shitty cancers I am eligible to receive as my parting gift. ("Contestant- do you want to know what's behind door number 2?" "CANCER!" Audience applause)
And while I am not one to fall apart at getting shitty cancer related information, this one stuck with me. Partly because I've really enjoyed the hell out of being healthy, right? And also because I was reminded that vigilance is the price of admission for my life.
During my exam, my mind kept wandering to that stupid ad for Red Roof Inn: "We'll keep the light on for you." Except, this ain't no fucking low rent motel. And the light I need to continue to burn is a reminder about staying "woke."
So, thanks to Emma, I now get to go to the boob specialists TWICE a year. And we're gonna discuss Tamoxifen at an as yet to be determined date. Apparently it works wonders at keeping breast cancer at bay....like it's some kind of bug spray...or deer urine in the garden...or Ritalin...
I guess that's all good. And I thank my lucky stars (despite the traffic and cost of living) to live in a place that employs people like Dr. Capp and Emma.
And cancer, I'll keep the light on for your ungrateful ass; but don't you even think about seducing one of my kids. I'm not playin'.
Gentle Reader-
This past Friday I celebrated another cancer milestone: the third anniversary of my diagnosis. It passed like any other day. I got up, got dressed, brushed my teeth, dropped the kids at school, and participated in all the regular boring day stuff most adults in our nation experience. In short- it was nothing special or remarkable. I may have mentioned it to a casual passerby, what this day was for me. But to any other outsider it was plain old me, doing plain old stuff, taking life and all that comes with it for granted.
And that is a cause for celebration.
While Hodgkin's Lymphoma is referred to as "the good kind of cancer" that diagnosis and treatment turned my life upside down. And I must be completely honest when I say, that at that point in my life there was plenty turned that direction already: a divorce, two school age kids, and a pending short sale of our home. In other words, I really didn't need another thing stacked onto my already overburdened plate. Yet, life, God, the Force or whatever you want to call it somehow thought it was a great idea to add one more thing.
During that time, I really was astounded by just how shitty things had turned. And maybe the life lesson was that of humility. One of my painfully honest colleagues told me, in the middle of treatment, that I was the person she compared her life to. In that: "Well, it could always be worse.." kind of way. Yep, I was THAT lady.
As you, gentle reader, already know things worked out. And here I stand three years later, my lungs a little smaller (thank YOU bleomycin toxicity!) my stomach a little less toned (thank YOU prednisone!) yet my heart is ever larger.
Today, I am engaged to a wonderful, lunatic who swears on his very existence that nothing bad ever happens to anyone who is close to him. SWEARS, I tell you. And I lovingly reply back: Man, I hope I'm not the one who blows the curve.
I still live on borrowed time- in six month stretches. I head back to my white coated MD's at SCCA in September to make sure those pesky lymph nodes remain unburdened. And of course, I will freak out and drive everyone around me crazy with my anxiety. But, that day will come. I will take my Ativan. I will surrender my body, my blood to the search. And I will tell myself that I can handle the outcome- regardless of what it is.
And that, my friends, is my life today. Boring, normal, unremarkable.
Ta-da!
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!
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.
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.
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?
