27 February 2010

Auntie Mame [Everyone Should Have One]

My love of old Hollywood movies stems from a childhood tradition of watching them on TV with my mom on lazy weekend afternoons. She was particularly enamored of those that were made in the 1940's and 50's. Auntie Mame was a certain favorite in our house. She was bigger than life, independent, confident, eccentric, and wise. I've always wanted my own Auntie Mame.

She came to me, at last, in the person of Barb S., the director of the Women's Health Center at the hospital. With her deep and smoky voice on the phone, she pretty much gave me no choice but to meet with her prior to my first chemo session. It was imperative, according to her. No if's, but's, or maybe's. "Because," she insisted in that cordial Auntie Mame sort of way "all that you will need to know about chemo, I will tell you. You need to know what to expect so that you are prepared. That's my job." So, I eeked in an hour to see her prior to my first chemo session on March 11, 2009.

I was nervous and sort of out of body on my first chemo day. I did not know what to expect, except all that I read from the literature my oncologist gave me, plus the hours upon hours of research I did on the internet. My head was stuffed with too much information I couldn't process anymore. All I could remember was that I was at once not looking forward to the chemo and being impatient for it to commence. Altogether, it was going to be an awful experience. Period. So, in that state, I walked into Barb's well-appointed office -- so warm and inviting, peppered with health books, mementos and dog pictures -- everywhere!

It was uncanny how Barb oozed Auntie Mame (save the cigarette holder of course). She greeted me not with a handshake but with a big bear hug. Being in her presence was like being immersed in warm bath water with bath salts. She was soothing and assuring -- and bubbly. Barb has some heavy-duty creds to back up that genial hug. She's a licensed nurse practitioner specializing in women's health issues and has been in the business of aiding women with cancer for the past 20 years! So, the information she had for me was both practical and academic.

My one-hour meeting with her was the most informative meeting I'd had to date, considering I'd been meeting with doctors, nurses, and all other kinds of health care professionals for weeks. She was chock full of practical information, all of which (in retrospect) was spot on -- from which day I was going to feel bad after chemo, to how many weeks after chemo I will feel normal again, or to when my hair was going to start falling off (how? etc.), and when I was going to lose my eyebrows, and more!

But that's not all. More importantly, she addressed an issue that I was too crazed to even think about: how chemo was going to affect my appearance in the next few months. Yup! What do you do when your hair starts falling out? Or, how about when your eyebrows disappear? Wig? Or scarves? What about your skin? Will you break out? To the naked eye, it may just be about vanity. But, as Barb put it, when you look good, you feel good. And when you feel good, you get better. Simple. Yes. But very much taken for granted. She said that I may not have at that point thought it was of import. But it will be. So, she enrolled me in a make-over class and set up me up with a wig consultant, complete with free wig of my choosing. Bless her.

Barb stood out because of her unique was her approach and attitude. Although all of it was serious stuff, she had a certain lightness about it all -- much like Auntie Mame. "This is not the end, honey. This is but a detour. Give it all your energy so that you can go on with your life in a little bit" she said with a smile that could light up a whole room. In what then was sometimes a gray and cold existence, Auntie [Barb] Mame came and gave it light and color.

"Life is a banquet--and some poor suckers are starving to death."

26 February 2010

Guess Who Ended Up in the Driver's Seat Anyway?

The phone conversation with the insurance lady left me feeling like that plastic bag in "American Beauty." But, I did not find any "beauty" in my particular wind dance. I was angry, sad, defeated, incredulous, tired, at a loss, and depleted. Like that plastic bag, I was windblown and empty. So, I put my hands up in the air once more, said "whatever" and succumbed to Ambien.

I was still in that Ambien haze when Dr. T greeted me the next morning. But, that soon cleared up when he escorted me into his office with that bright smile and hearty handshake. After we sat down, he showed me a luminous outline of a woman's body with glowing dots on his computer screen. They looked like little constellations. It was my PET scan. "It's ovarian cancer," he said as he pointed to the dots around the cervical area. "And as you can see, it has metastesized to your chest cavity," he continued, while tracing the dots up to the area in the midst of my lungs and heart. How ironic that an image so pretty could be an indicator of something so deadly.

Maybe it's because I'd been through the "cancer news" grindstone once that I didn't feel the sting or the blow of the news that it was Stage 4 Ovarian Cancer. Or maybe it was because I was numb from my phone call with the insurance lady. But, it was probably mostly because, the news came from Dr. T. It was actually a relief that he had solved the cancer mystery. Strange.

Because of its advanced stage, Dr. T was going to be very aggressive in treatment: Carboplatin and Taxol chemotherapy for at least 8 sessions, once every three weeks. "This is not going to be easy. But it's treatable," he said. "Are you ready to do this with me?" was his battlecry. Yes! Of course! I'm ready! Where do I sign up? When do we start? Let's do this!!

Oh wait...there's "small" matter of insurance coverage....

I took a deep breath, squared up and told Dr. T that I was ready and willing, but may not be able to fight the fight with him. A brief synopsis of my conversation with the insurance company followed. Without hesitation, Dr. T said "Well, you won't have to see another doctor. We're doing this together. Let's have you meet with my finance office now and we'll sort it out. You need not be bothered with this. I need you strong and prepared for chemo."

Dr. T handed me off to Suzanne, who headed up his finance office. After she heard my story, she immediately told me to leave all the financial details to her. She was going to talk to the insurance company and find out what's going on. "Don't worry. Your job is to get well. My job is to deal with the insurance folks. OK?" [I think at this point I may have seen the heavens open and heard a choir of angels sing "Ode to Joy."]

Yes! Dr. T [and his crew] had taken the wheel again! Take that, insurance company! His office ended up entering into a unique contract with my insurance company, agreeing to a very low pay scale (apropos to my POS plan) in order to continue with my treatment. No, I didn't get treated for free. But it cost me much less than what the claims rep had quoted me (it's about 5% of the total cost of treatment), . It will take me a while to pay off what I owe Dr. T. but I'm glad to pay for it. It means tightening the belt all the more, but I have my life! I am grateful, beyond words to the efforts Dr. T's group put into sorting everything out with the insurance company. Not only did Dr. T save my life, but he also agreed to save it for a huge discount.

So here's to the man who took the wheel back from the insurance company and saved the day(nay, my life) with a big smile and an even bigger heart. I will follow him whereever he tells me to go. And I hope my Christian friends will forgive me as I fondly refer to him as my lord and savior, Dr. T.

24 February 2010

Oh! But They Wanted Someone Else to Drive!

On the eve of my first office visit with Dr. T, to find out what cancer I had and the appropriate treatment regimen thereof, a claims representative from my health insurance company gave a call. She was calling to inform me that Dr. T was not an approved oncologist on my POS network, although he is listed in the PPO network -- which I did not have! Therefore, the insurance company would not approve any treatment I would receive from Dr. T.


After taking a deep breath and counting to 10, I reasoned with her, telling her that I had no choice in the matter. The Internist assigned to manage my care at the hospital picked Dr. T to be my oncologist. Presumably, the hospital had cleared Dr. T with the insurance company before he met with me. And because of that, I went ahead and consulted with him and subsequently decided (with great relief) that he was the man for the job.

The claims representative apparently heard none of what I just said. Her robotic reply to my impassioned plea for Dr. T was "I'm sorry mam, he's not in network. So you're gonna have to pick one who is. There are plenty of good choices on there." Just like that? "Choices?" Just pick another oncologist from the list? Would this be just like picking a lunch special from a deli sandwich board? Or a new lipstick shade at a cosmetic counter? Choices? I mean, some people even have a hard time picking a new hairstylist, nevermind someone who's going to save their life! Just pick another oncologist from the list?

How would I do that? How would I start over again? How would I tear myself away from Dr. T, to whom I had just entrusted my life, and go on to interview a new group of oncologists? I couldn't fathom it! Dr. T was the first doctor who had steadied me since my ordeal began. And now, they've gone and pulled that very foundation from underneath my sanity. How would I interview a whole new group of oncologists, when deep in my being I knew I had found mine? My brain was in shambles once more. I had that crazy-scary ride feeling again! And I was panicked because time was of the essence. Cancer was eating away at me and they wanted me to go back to first base again. Did she not read the file and notice that I had Stage 4 cancer? What in the world were these people thinking? Or were they?

Over and over, I insisted that I could not change oncologists mid-stream. Dr. T. was well on his way to diagnosing my cancer and coming up with the treatment regimen. "OK," the rep said. "I'm afraid that if you insist on an out-of-network specialist, you'll be liable for a $5,000 deductible. And then, we will only pay for 80% of your medical costs."

[Thanks very much for your kind generosity, oh mighty insurance company! How about I reciprocate that with not paying premiums up to $5,000 and then pay only 80% of my premiums thereafter? Fair?]

I'm a single mother who works for a non-profit organization. Non-profit workers do not make a lot of money. But hey, it's a lifestyle choice and I don't expect anyone to feel sorry for me. I'm glad to be working for a cause and away from the corporate grind. But since the pay is not high, financial sacrifices are made. One of them is paying over $200 a month for my health care insurance because I wanted to be prepared for times such as these. Even though these premiums (among other living costs) made it difficult to make ends meet every month, they were necessary costs. So, to be liable for a $5,000 deductible plus 20% of what would be a huge medical cost was a something I couldn't do. No way! I don't have a mortgage against which to borrow nor any other assets to throw into this looming debt. I am a member of a the growing class of the working poor.

Desperately, I appealed to the better side of the claims representative and "begged, pleaded, borrowed." I did everything but walk on bended knees to the insurance headquarters whilst flogging my back raw to present them my first-born. But to no avail. She said rules were rules. Either I pay out of pocket for Dr. T or pick another oncologist from the list.


Now what?

[Mine was a minor situation of the millions of other more egregious reasons why we need Health Care Reform. Health insurance companies cannot be keep preying on the weak and the sick and keep gouging their insureds. They have to be regulated! This abuse cannot continue. I am but a mere drop in the bucket. Sadly, health insurance does not ensure health care.]

23 February 2010

The Man Who Took The Wheel

Dr. T introduced himself with a big handshake accompanied by a luminescent smile that lit up his apple cheeks. Even more fetching was his very bold and colorful shirt and tie combination which paled his white coat all the more. I don't know what oncologists are supposed to look like or seem to be, but, "bright and smiley" were not words I would immediately associate with them. Beneath his shiny veneer, Dr. T is a well-credentialed and experienced oncologist and hematologist. (Wow! Two birds with one stone. Begone! pesky blood clots!). Naturally, because of his good reputation, he had a busy practice. And it was apparently difficult to get an appointment to see him. "He's one of the best. You're blessed," said the Chaplain to me.

Yes, his credentials and reputation were certainly important. But, I knew that I wanted him as my oncologist when I shook his hands and looked into his eyes. Dr. T exuded confidence, but not ego. He was professional, yet cordial. He was also very forthright, assuring and compassionate as he delivered the news that he couldn't tell what cancer it was. Were he another doctor, I probably would have fallen apart. Instead, I appreciated that he wanted to have more tests done, including further examination of the biopsy by the pathologist. Without my asking for it, Dr. T was going for the "second opinion."

Even though he had no answers by the time we said "goodbye" at the hospital, Dr. T sent me home with this comfort: Whatever type of cancer he found, it was going to be treatable and "We might even be able to make it go away." Again, said with THAT smile. What a great big dollop of hope! And what a lot of boost, as I set to left the cocoon the hospital to face the world. At least at that juncture "Now what?" had an answer. Unequivocally, that answer was to put my life in this man's hands. Altough very sad and scared, I felt assured that Dr. T had taken control of the wheel of the most out-of-control and scary ride of my life. After that, I was prepared to ride that car where ever Dr. T took it; because I knew that he had mapped it to go to a place called "Treatable."

A week from my hospital releas, I was going to meet with Dr. T so he could tell me what kind of cancer I had and we could start treatment. It would still be a scary ride. But, I had confidence in the driver. I knew he had it under control.

22 February 2010

Even Boxing is a Team Sport

Though the good Chaplain's advice about my ensuing bout with cancer resonated, and I believed that if I were to beat cancer, it would have to be up to me, that was just the start. Waisn't it? Something this big could not have been borne by one person alone -- no matter how prepared or strong (which I wasn't, thank you very much). Even with the Chaplain's "boxer" analogy, we all know that any boxer in a boxing ring did not get there by himself. And altough he is seemingly alone in that ring, he has a team behind him. There are his trainers and sparring partners, his doctors, nutritionists, coaches, managers, agents, the person who brings him water, all working with the boxer toward one common goal -- to beat the other boxer. AND, he even has at least half the crowd (amongst whom are his loved ones) rooting him on. All of that that, including the boxer, has to do with whether he wins or loses the fight. It is not a sport of one. Though the victory or defeat of a boxer may seem to be theirs alone, it is indeed shared and carried by many. No one does it alone. Thank goodness for that!

I certainly couldn't have done it alone, no matter how high or intense my resolve was. And I will always be grateful for the team I had (and still do!). There were the health care professionals who diagnosed, planned, monitored and executed my course of treatment. Then my were my friends and family who, prayed for me, cheered me on, cooked for me, schlepped me around, showered me with presents and good cheer, held me, made me laugh and just plain loved me through it all. My phenomeal colleagues at work covered for me, asked no questions, but offered everything else, most important of all, they were fierce guards of my privacy at work. No one patronized me nor condescended to me. Everyone supported what I was going through and was always (in a drop of a pin) ready to help. All I needed to do was ask -- and sometimes, not even. This was my fuel!

What is that saying? There go I, but for the grace of [insert everyone's name here].

The next series of posts will mostly comprise the telling of those people and events that have held me up and helped me through my illness. Consider it my "Oscar speech" (in the spirit of the upcoming Oscars). Because I do feel like a winner, standing where I am. BUT, only because I have these wonderful people to thank, whom you will next meet in no order of importance.

(...and now, what gown to wear?) :-)

21 February 2010

Perhaps It's That Simple

The other night, I was having a huge existential crisis. Since entering remission, I've felt my life in flux with serious lack of direction and purpose. Why did I survive cancer this bad, only to be brought to this place? Why? There's got to be a reason. I was crying for one.

Then, I was given wise counsel: "Maybe it's just as simple as having an excellent oncologist and you wanting to live."

It's very Zen.

But it may be that simple.

19 February 2010

And Now, a Brief Moment of Silly Puffery

(Portrait of an Artiste as a Cancer Patient)

My posts have been oh-so-heavy, haven't they? So, I thought I'd indulge in a moment of silliness. I found this little drawing while I was reading my journals from last year. It was a poor attempt to occupy my time (distract my panicked brain, actually) while I was waiting to be wheeled to the next test. The other choice for distraction was reading the latest issue of "OK Magazine" that my daughter had left behind that day. But, for some reason, the prospect of reading "whose whomin' who" in Prada and Jimmy Choo's was giving me a serious case of nausea.

So, with a suddenly sense of "inspiration" (or was it delusion?) I decided to draw instead. Quickly, I arranged my glasses, watch and medicine cup on to the tray in front of me, et voila!

Now I can strike "take painting lessons" from my bucket list. :-)

Happy Friday!

18 February 2010

Objects are Closer Than They Appear

It shouldn't really come as a surprise that writing about the events of a year ago have been more difficult than I thought. Well, to be honest, I really didn't consider that revisiting a year back would open Pandora's Box for me. Once my oncologist said I was in remission, I "stepped on the gas" and rode away from it all and never looked back -- until now. I mean, really! Do you blame me? Cancer is not a pretty thing to look at nor contemplate, particularly if you'd been through it. So, it was the [road to the] future, or bust!

This blog is part of that road to the future. I thought that having had cancer and going into remission had to count for something. I needed to do something with it. After months of figuring out how and where, a couple of very trusted loved ones suggested this forum. Reluctantly, I conceded that it made sense as a first step. With the aid of my journals from last year, I began to post here. The hope was that my experiences would be of help to someone else. Throw the seeds out there. Something might grow.

Admittedly, this has been surprisingly challenging because "looking in the rear view mirror" has proven the past to be closer than I thought it was. Each post is like picking on the scab of a still fresh and deep wound. I'm not saying this so that anyone should feel sorry for me. Rather, I want to say that cancer stays for a while because it affects everything from your physiology, to your psychology, maybe even your spirituality on very deep level. It's ironic that you are told you're better, but you actually are still sick. And it's a long road to wellness. So tread lightly and be gracious to yourselves if you have been through it. And for those of you who know cancer survivors, being aware of that might help you understand and help them better. It's not as cut and dry. I wish it were. From this vantage point, things seem more frightening and foreboding than they were when I was actually in the middle of it all. Like they say, "hindsight is 20/20." And the hindsight is pretty scary.

Thomas Wolfe said "You can't go home again." In this instance, I must. Because only in looking back and being okay with what's behind me can I look forward and go full speed to the future that is in front of me.

The last thing I want this blog to be is a confessional or a place where I just listen to myself talk. But, as I work through all of this, I hope that it is helping someone else sort things out as well. We're not alone.

Now what? I'll keep looking towards the green pastures ahead, while paying mind to the objects in the rear view mirror as they get smaller and farther.


17 February 2010

A Mere Drop In the Bucket

I will never forget Robin Beaton's testimony before Congress wherein she tearfully detailed her insurance company's denial of coverage for an already approved life-saving double-mastectomy. Apparently, she had "not disclosed" a "pre-existing condition." The "pre-existing condition" in question? -- some form of acne on her nose that her dermatologist treated years before. And for that, the insurance company decided not to cover her surgery at the 11th hour. Wow! Who does that? How evil can one be? Denying someone's life because of an acne condition? Really????

How are insurance companies able to get away with crimes like this? And they have been doing this for years! Ms. Beaton, is just one of the many who have been victimized by the insurance companies. There's more here. But this is just a small listing of health insurance company atrocities. It is a mere drop in the bucket of their violations against their insureds. Health insurance companies are more concerned with playing to the whims of Wall Street to profit their stockholders, than fulfilling their obligations to their insureds -- the people who pay their bills. These companies wield their power over those in dire need because of technicalities. They're about profit, not insurance! Meantime, those in need are not protected and are left to the mercy of these people. They need to be regulated.

For obvious reasons, Healthcare Reform is something I'm passionate about -- more so now than ever. It is not just because I now have a pre-existing condition. It is essentially because it is only fair. We pay for so many other things with our taxes. Why not healthcare? And why should anyone be at a disadvantage because they're sick or poor? If we can pay for war, we certainly can pay for healthcare.

Yes. The President's Health [Insurance] Reform Bill is not perfect. And for those of us who hoped for public option during the President's campaign, this is particularly disppointing. BUT, but, but, but, but, it's a start! Folks, we will never get anywhere unless we take the first step. For decades, we have debated this issue and that's how far we've gotten -- debate! Meantime, health insurrance companies are allowed to get away with denying coverage for people like Robin Beaton and continue to walk all over the carnage of their "insureds." Nevermind the millions upon millions of Americans who are flat out denied insurance for various and sundry reasons.

The President's Bill is a step in the right direction. It's a small step. But, let's not ruin this "small step" by insisting on something perfect. Otherwise, we will circle back to where we were: debate! Debate does not protect people like Robin or get rid of the very long lines at "free clinic" days in hundreds of towns in middle America. Stop the debate and pass the law to protect against the insurance companies. Please contact your representatives and urge them to pass the bill.

"Don't let the perfect get in the way of the good." -- Ted Kennedy

16 February 2010

It Wasn't Lymphoma Afterall

I met my oncologist at the hospital soon after the Chaplain left me. After a quick (almost harried) introduction and a big, warm handshake, he told me that he is not convinced that my cancer was lymphoma. He was uncertain as to which organ the cancer was originating, even after reviewing all the tests, the biopsy and the "pictures." Without knowing which organ the cancer was coming from, he could not treat it effectively. So he kept me in the hospital longer, and ordered tests, including a few blood tests (the "rainbow" as the phlebotomist nicknamed it) as well as an MRI and a PET scan. He also sent the biopsy back to the pathologists for deeper examination.

If I felt like someone struck me with a baseball bat when Dr. Z told me I had cancer, finding out that this wasn't the case at all and that the doctors did not know what type of cancer it was felt like a free fall to a bottomless pit (the pit being death). Confusion and panic reigned. How could I retract what I had just painfully told my nearest and dearest? "The good news is, it's not Lymphoma. The bad news is they don't know what it is. But it's still Stage 4." I wanted to hurt someone! But I couldn't. I don't know if it's ever possible to get numb from too much pain. But that's what it felt like. I was too confused , discouraged, doubly frightened and panicked to make a fist, let alone hit anyone.

Denial. That's how I survived the time between the last time I saw my oncologist at the hospital and the next time I saw him at his office -- the longest week ever! If I didn't ride the denial train, I would have needed a strait jacket and a big padded room. Because each time I got off the world of denial and visited reality, all I could think was that cancer was eating away at me and the doctors couldn't tell where it's coming from. Then I would be paralyzed with rage and angst. It's like a "ghost in a machine," only it's a ravenous ghost in my body and it's eating away like there's no tomorrow! It was impossible to contend with that consciously So I pretended nothing was the matter. I hid behind work and more denial.

Finally, on March 5, 2009, I was diagnosed with Stage 4, Ovarian Cancer, metastesized to my abdomen and my chest.

15 February 2010

my prayer

may my heart always be open to little
birds who are the secrets of living
whatever they sing is better than to know
and if men should not hear them men are old

may my mind stroll about hungry
and fearless and thirsty and supple
and even if it's sunday may i be wrong
for wherever men are right they are not young

and may myself do nothing usefully
and love yourself so more than truly
there's never been quite such a fool who could fail
pulling all the sky over him with one smile

~e e cummings


I hope y'all had a good Valentine's Day. Mine was wonderfully spent with my Sweetie.

14 February 2010

The Chaplain

Faith in the Divine runs through my veins. I couldn't imagine my life without faith.

I was born and raised Catholic -- "old skool" Catholic -- although I had never been confirmed (a regret my mother carries to this day). My education is Catholic. I even once wanted to be a nun. But as I grew older, I dabbled a bit in mystic eastern religions due to curiosity. And that was quickly quashed by my very devoutly Catholic mother. In youth, I was a bona-fide born-again Christian, complete with a dream of one day preaching at the pulpit. I even have a degree in Judeo-Christian Theology. In later years, my eyes opened to other religions such as Buddhism, Hinduism and other polytheistic religions, as well as the goddess-based religions. My only regret is I know so little about Islam.

As I learned more about other faiths, I came to the conclusion that the God that I grew up with is also the God of the Buddhists, the Muslims, and the Shinto, and even the polytheists. God is God. It's just that people are different and well, because of that, they will worship and idealize differently. But the Divine is constant. Therefore, I respect other people's faith, no matter what canon. Your God is my God, so long as your god is not the god of oppression, or enslavement, or pain and suffering. It's all good. "One love," as Bob Marley sang.

Having said that, what always puts me on the defensive is when people force their beliefs on me; or imply that my beliefs are wrong. I believe that faith is a personal matter. And unless someone asks me, I don't impose my beliefs on anyone else. So, I think it's fair to expect that of others as well. "Live and let live."

The Chaplain knew none this when he paid me a visit at the hospital, poor thing. After asking about my well-being and listening to my story about the last couple of days at the hospital, he asked me if I believed in Jesus Christ. I said I was a huge fan. (I know, I know, that was unfair). Undeterred, the Chaplain tried another angle. He asked whether I believed in God. I honestly answered that I believed in many gods. "Many gods?" he repeated. "Yes. I'm a pantheist," I answered, with a smirk. Admittedly, I had hoped that with that response, he would leave me be. I know it wasn't the most courteous of answers. But it was a true answer. The delivery might just have been a little too curt. And for that, I was sorry.

It's just that the good Chaplain had me on the defensive, when he barraged me with his questions. When I calmed down I knew that he was just doing his his calling; that he meant well. He also believed that it would do me a world of good if I believed in Jesus Christ(as my Lord and Savior) and unburdened my troubles to Him in prayer (I know. I used to do what he did). And because he truly believed that, he was relentless in his conversion efforts, even though I tried to explain repeatedly that I appreciated what he was doing and offering, but "Thank you. No"

Bad form. I know. But you see, at that point, I was really angry at God. Angry! I was feeling very sorry for myself. And the last thing I wanted to do was to be in supplication and praise God to help me. What I really wanted to do was to scream at the heavens and ask why. Why me??? I didn't want to beg for anything nor promote goodwill amongst men. I wanted someone to give me an answer. Short of that, I wasn't participating in anything or turning my life over to anyone. I was at war with God and the Chaplain was caught in the cross-fire.

Here's the thing. I believe! With my whole being, I believe. But just because I believe does not mean I couldn't question or be angry. I am human. I have feelings. I also have the capacity to reason and question. So really, I don't think God took issue with my anger or my question. We were given the capacity to reason and feel, after all. And I don't think prayer would have helped me at that time. Certainly, I couldn't pretend that I wasn't angry or in despair. It's futile to lie to yourself or lie to God. I had to feel those feelings first before I surrendered to my fate or made peace with God(as I did later on). The Chaplain's prayer request was a bit premature at the time. So, I thanked him very much for the visit and bade him "good-bye." He left.

To my surprise, he was back the next day. Per usual, he asked how I was and I told him. Then, with a big smile in his face, he asked "do you still believe in your many gods?" I laughed. I had had time to cool-off and think since he saw me the day before. So I clarified what I meant and apologized for being defensive and curt with him. But I also asked very politely that he respect my beliefs inasmuch as I respected his. He nodded and took my hands. "Don't worry, we're not going to pray. I just want to tell you this," he said
"You see, what you are about to go through is like a boxing match. You and cancer are the boxers in the ring. You can have as many people in the audience cheering you on. You can even have your manager (who can be our care-givers and such) and other advisers on the side of the ring to go to for strength and advice. But in the end, it's about you and the cancer boxing in the ring. So you fight that cancer! Fight it as hard as you can. Because you're the only one who can. Okay?"
He had me in tears. That day, the Chaplain did accomplish his mission to help. Instead of imposing "his" God to me, he spoke of the God within us.

I'm grateful to the Chaplain's for this very empowering advice that helped fuel my bout with cancer last year. It's amazing what happens when we open our hearts.


13 February 2010

My Surgeon

He's my surgeon because he found the swollen lymph node from which he took the biopsy. I had an appointment to discuss the biopsy with him the day I had to take myself into the ER due to my inability to breathe. Needless to say, I was quite concerned and disappointed not to see him that day. Dr. R is a very amiable, non-assuming person. He quickly put me at ease during our meeting and ensuing encounters. I liked him a lot. And if there was anyone who could have softened the blow of a cancer pronouncement, it would have been him. Think "favorite uncle or grandfather." That's the gentle Dr. R.

So imagine the deeper shock to my system when it was Dr. Z who delivered the news and not my favored Dr. R. It was doubly devastating. I knew that if I got the news from my surgeon instead, the blow would have been less severe. Ahhh, but the gods had other plans, I guess. Suffice it to say, not seeing Dr. R that day contributed a lot to my feelings of isolation and and estrangement at the hospital. He was the one doctor I wanted to see the most. But to no avail. Oh well....

I woke up more disoriented the next morning. Even though Nurse J had been good enough to give me some Ambien for sleep, it was nonetheless a fitful night of "sleep." It didn't help that the only person with whom I felt comfort (the lovely Nurse J) had completed her shift and I was now under the care of another nurse. All my feelings of wobbliness came rushing back that morning. I was in a quiet panic once more.

It was in the middle of this internal chaos that my surgeon appeared, unexpectedly! He was in his scrubs and had a piece of paper in his hand. I squealed his name and he almost ran to me. Then I just collapsed in his arms. And for the first time since I heard about my cancer, I heard the words "I'm so sorry." He held me quietly as a cried like a baby for a good long while. I needed that.

Acts of kindness don't have to be in grandiose proportions. What was it for Dr. R to just swing by and visit me before he went to surgery? Probably not much. But it meant the world to me. What was it for him to say "I'm sorry" not in apology but in sympathy? But it fortified me. The smallest demonstrations of sympathy can sometimes mean the most. What Dr. Z lacked, Dr. R made up for in leaps and bounds.

Kindness. It never fails.

12 February 2010

THE Nurse

By the time I was wheeled into the hospital's TCCU (Transitional Cardiac Care Unit) that night, my body was "road weary", my mind was in shock, and my soul was parched. The two weeks leading to this moment had been peppered with multitudes of tests, doctors, needles, drugs, and even a biopsy, and then finished off with what I thought to be my death sentence. I felt like an empty, used paper cup.

Thankfully, my bed was greeted by a warm, strong voice, accompanied by a big smile. "I'm 'J,' your nurse; and I'm going to be taking care of you tonight. You're here because you need to be watched closely. Those clots can be dangerous. So we have to get rid of them as quickly as possible!" Her presence was assuring. She radiated care and comfort. This might sound trite, but is absolutely true. As soon as J crossed my plane of consciousness, I knew that the crazy ride was over -- for that moment. It was time to stop and recuperate sanity. I started to see the light at the end of the seemingly never-ending gray tunnel. I felt the ground beneath me. I could feel my heart beat again. Exhale......

J was compassionate without being overbearing; professional without being distant; and, most importantly, present. Her presence shored up my then-weak foundation. She was diligent, informative, assuring, and patient -- the quintessential care-giver. She took care of me for only two 8 hour shifts of the 2.5 days I was in the hospital, but the impact she made was quite significant. Particularly, I am really grateful for one short piece of advice she gave me. It became one of the helpful tools I used consistently during my bout with cancer.

One of the hardest things I had to do after I found out about the cancer was to relay this to my children. I was at a loss. What a daunting and heart-breaking prospect! It weighed heavier in my mind more than the cancer did. How do you tell your children that you are gravely ill? What an awful, awful thing to have to do! I wished more than anything that I could spare them, keep the cancer away from them. They're two young adults, with their whole lives in front of them. Cancer need not get in the way. I wondered if there was a way around this. There wasn't, of course! And I needed to tell them immediately. I was in a panic.

J, listened to my dilemma intently. Then, she offered the most perfectly brilliant solution: "Set the tone. Set the tone and they will follow." Wow! It was so simple and obvious -- and so true! How empowering were those 4 little words! Set the tone. Of course! How they would take the news would be up to me, largely. They're my kids and they will negotiate this difficulty based on the tone I set. I had to take the reins and not fall apart. If I needed to be surrounded by positivity and strength, I needed to demonstrate that. It had to start from me. What a great gift to have gotten from the Nurse! And for that I will eternally be grateful.

Nurses, I think are the unsung heroes of the business of curing folks. Their role is so substantial, yet (it seems to me) mostly unsung. If the doctors cure, then the nurses care. But that's even a gross oversimplification. Yes, doctors can come up with the course of treatment. But who is there with the patient, making sure that the course is executed properly? In my vast experience with health care professionals this past year, I can say with great conviction that without the nurses like J, I wouldn't have been able to do it. They were there to clarify, care, listen, and carry out the course of my treatment and provide the grounding and sanity needed to "stay the course."

So, J really is the the perfect example of all the nurses to whom I owe so much; from those who assisted me in the ERs to the other shift nurses at the hospital to the wonderful, wonderful oncology nurses who administered my chemo with so much care and compassion. Thanks for sanity and grounding over the past year.

I wouldn't be here without you.

10 February 2010

The Internist

Soon after the ER doctor gave me his diagnosis of pulmonary embolism, he informed me that I was being admitted to the hospital so they can monitor and dissolve the clots and administer more tests. Another doctor was taking over my case. He wished me well and left.

A while later, a tall, stoic, man in his 40's, wearing a crisp white coat, walked in with even, measured strides, carrying all the authority of a 5-star general. He introduced himself as Dr. Z, the Internist assigned to my case. My GP did not have a hospital practice and, therefore couldn't look after me while in the hospital (how bureaucratic is that?). Great! More strangers to poke and prod at me (and another person for whom to repeat for the the umpteenth time, the events that led me to the ER that day).

Now, using the word "stoic" to describe Dr. Z is quite the understatement. If Spock and Ripley (from Aliens) had a love child, it would be Dr. Z. Let's just say that he did not radiate warmth of any sort, but rather he was stiff, authoritative, measured, and very "business-like"-- in that 60's TV show doctor sort of way. This was the man who "delivered the news."

After we discussed my pulmonary embolism and the protocol for treatment to dissolve the clot(s), he told me that my surgeon had sent the biopsy results to the hospital for review by my medical team (of which now Dr. Z's in charge). Dr. Z then asked me whether I wanted to know the biopsy results (Uhm no...I don't want the answer to something that's been preying on my mind every waking hour for the past week...) Of course I did!


He stood there, towering over me with his arms folded. "It's not good," he said robotically. Gulp...."Cancer?" I asked. "Yes. And it's bad," he replied. Now, even though I'd been thinking "cancer" since I heard the word biopsy, there was always a tiny glimmer of hope that it wasn't. And hearing that it was indeed cancer from a doctor sure was another thing. It was official! A sentence had been pronounced and a gavel had been struck. Cancer! It felt like someone had taken a baseball bat and swung it at me. Every other word I heard (though the good doctor never said it) was "dead." I'm dead. What cancer was this that was going to kill me? With guillotine precision, Dr. Z enunciated: Stage 4, non-Hodgkins Lymphoma.

Whatever did that mean? Why is it a Stage 4 rather than a 2 or a 3? Lymphoma, I'd heard of before, but did not know the specifics. And I certainly wasn't aware of stages. None of those words meant anything to me. All I kept thinking was that I'm dead. And, for the life of me, I couldn't articulate the questions that were milling about my head, except one: "Is it curable?" The cancer had apparently wreaked havoc in my lymphatic system, as well as my chest, pelvic, and abdominal areas. So no, it was not curable, but that it was "stoppable." That did not make sense! What stuck was that it was not curable and that it was everywhere in my body. (There went my head rolling off the guillotine!). I'm dead!

You'd think at a time like that the whole world would have gone black. Instead, everything seemed to slow to a stop, then turned gray, quiet, and cold. I should have been screaming or crying or something. But I was dumbfounded. All I could do was stare at the unblinking, almost blank eyes Spock's love child, trying to find life, hope, or even warmth. I'd like to have heard an "I'm sorry" or something to that effect. But nothing. He just stood there. Unmoved by what should have been my violently shivering body and frightened eyes, Dr. Z continued, in his his well-cadenced speech, to say that I was going to meet his chosen oncologist the next day to discuss the cancer further, as well as the suitable course of treatment. The oncologist would be in a better position to answer any more questions I had. He bade me "good night" and walked out of the room in perfect stride. That was February 25, 2009.

From where I stand now, I think that the Internist did me a big favor by being the way he was: calm, cold, and calculated. Because if he had shown me even an ounce of sympathy (or even blinked!), I would have fallen apart in his arms completely and probably would not have been able to keep it together for everything that was to follow. Looking back from a year's distance, I can see how important it was that I did not fall apart at the hospital and the very important part that Dr. Z played in that. So, thank you Dr. Z, for your cold comfort. Live long and prosper!

09 February 2010

And Then There Were Four

What I didn't mention in my previous post was how disorienting and frightening of an experience my second trip to the ER was. The first trip was certainly concerning. But I had my daughter with me, we were there in the middle of a slow ER night, and then and the doctor who mostly looked after me was the most amiable doctor I'd met in a long while. For an ER doctor, he never made you feel like he was always in a hurry to the next patient. He certainly put me at ease, even though I was there for 12 hours and there was the looming mystery of the blood clot in my left leg.

My second trip to the ER was the opposite. I was alone and panicked by my inability to breathe due to the excruciating pain on my side, and it was in the middle of the day.

As soon as I laid down in my bed, I was given a shot of morphine. Perhaps because of the lack of oxygen coming into my brain, I wasn't comfortable from the start. There was sense of ordered chaos permeating in the room. I could connect with no one, particularly because of the harried pace of a mid-day Emergency Room. I felt disembodied as I watched doctors and nurses fly by me to get to the next patient and the next patient and the next.

Certainly, this is not an affront to the ER at all because I know it is the nature of the Emergency Room -- particularly that of a busy, urban ER. Doctors and nurses were just doing their jobs. But, it still did not negate my feeling of isolation and panic. It was lonely and scary. Still and all I didn't want to call anyone to sit with me in the ER because it was the middle of the work day and I didn't want to bother anyone. As I was being poked and prodded, x-ray'ed, needled and wheeled from one test to another, I felt like a disoriented rag doll at everyone's mercy. But I held it together enough not to fall apart. Thank the good doctors and nurses for the morphine!

In this fuzzy, disorienting environment, I couldn't tell you what the ER doctor or nurse looked like or the many, many x-ray techs and MRI techs, phlebotomist, and hospital orderlies that took care of me looked like or sounded like--not if you put every one of them in a line-up for me to identify any of them. Everyone was a blur except for four people: the internist, one nurse, my surgeon, and the chaplain.

They will appear in the order that I met them.

08 February 2010

Those Dodgy Clots

So, what started all of this? How did I get get here?

It's, thanks to these "cute" little things


What are they? Raspberry jellies? Little red underwater corals? Lychees? Nope. Blood clots -- dodgy little blood clots! And thank goodness for them. Yes, I did say "thank goodness" for them, because they paved the way to my cancer diagnosis.

It's not really certain when they started forming. But I'm sure that my very quick, tiring trip to DC to witness our 44th president's inauguration had something to do with it -- long airplane rides, overexposure to sub-freezing temperature for long periods of time, walking, standing around, walking, and then walking on and on from the crack of dawn until late into the night. My left leg started to hurt and swell a little in DC, but I dismissed it as just a bodily reaction from this new, tiring environment.

But by the time I got back home, the pain and the swelling had escalated to noticeable proportions. So much so, that I found myself in the ER two weeks after my trip because my left leg was so swollen, it felt like my skin was going to break and the leg would explode. The first doctor who examined me suspected a blood clot that my lead to a stroke. So he ordered a whole slew of tests, including a CT scan and 2 ultra sounds (one performed by him and another by a vascular ultra sound tech). Two doctors, several tests and 12 hours later, I was released from the ER with no clot in sight, BUT with strict orders that I was to see my GP immediately.

My GP did see me post haste. Alas! The mystery wasn't solved there. With head shaking, I was sent to sent to MORE tests, including another CT scan, several ultra-sounds and a referral to a surgeon. At that point I didn't even understand why I was referred to a surgeon. I thought, if there's a clot and they fear stroke, shouldn't I be referred to a cardiologist? hematologist? or some other specialist? But a surgeon? Oh well...I wasn't the expert, so I went to see the surgeon. And again, thank goodness! The mild-mannered, good-humored surgeon who had looked at the ordered test results took one good look at my swollen leg, felt my lymph glands and stopped at one (the one is at the right inside of my upper thigh on my swollen leg). "Feel that?" he said, guiding my hand to the swollen node (I barely felt anything). "I need to take a biopsy of that."

BIOPSY. Not a good word in my vocabulary. BIOPSY=HURRY! To say that I was alarmed is an understatement. I'd always associated the word "biopsy" with cancer. So the notion started floating in my head and I wanted the biopsy as soon as possible -- the same day if possible. But the quickest they could do it was the next day. We made an appointment to discuss the results of the biopsy a week later. It couldn't come soon enough.

I did not make it to the surgeon's office at the appointed time. I ended up at the ER instead. The night before my appointment with the surgeon, I couldn't sleep because my side hurt. I thought it was gas, so I took some Gas-X. No comfort. So at 5:00 a.m., I got out of bed, took a long hot shower and had some relief. I made my way to work -- an unusual thing because I usually leave for work at around 7:30 in the morning. I was too obsessed with the biopsy and too uncomfortable to stay put. By the time I got to work, the pain to breathe escalated. It hurt so much, I couldn't even speak. Short breaths were torture. A co-worker wanted to call 911 because I looked that bad. But, I didn't want a scene at work. So I managed to go downstairs and hail a cab and mumble "take me to the ER" to him. He did a fine job, although he was definitely panic-stricken.

No sooner had I laid down on my bed in the ER when morphine was administered and the very harried ER doctor sent me through to another round of tests. (My insides may be cooked at this time with the amount of radiation it's been exposed to over the past couple of weeks.) Let me just say here that I don't know I survived the chest x-ray. I don't know how I managed to take a deep breath and hold it without screaming in pain. Oh, I know why...it hurt to even speak.

Despite all the fuss around me, all I could think of was that I wasn't going to make my surgeon appointment to discuss the biopsy. So I asked the ER nurse to phone him and let him know where I am. The first thing I was going to do as soon as I got out of the hospital that night was to call his office and take the first available appointment. I just couldn't stop thinking of the biopsy.

A few hours later, the same harried ER doctor returned and said "I have good news and bad news. Which do you want first?" I chose to hear the good news first. "Well, the good news is we found out what's wrong with you. And the bad news is that it's a blood clot, lodged on the lower side of your left lung." Aha! The first ER doctor of a few weeks ago was absolutely right! There was a clot afterall! So they admitted me to the hospital so they could break down those dodgy clots and make sure that none of it travels to my heart and brain. I was assigned an internist and spent 2 and half days in the hospital. I forgot about the biopsy, obsessed about those dodgy blood clots and learned a few new words: pulmonary embolism, Coumadin, and Lovenox.

Everything changed after that.....

06 February 2010

World Cancer Day

My boyfriend sent me this link yesterday.

Embarrassingly, I admit that I had no clue it was such an occasion. But, whenever I see the word "world" as a descriptor of anything, I think it's a big deal. This one should be. The numbers WHO cites are staggering:

"Cancer is a leading cause of death around the world. WHO estimates that 84 million people will die of cancer between 2005 and 2015 without intervention."
It seems to me as though cancer awareness should be more wide-spread than it already is. I know that before I got sick, cancer just seemed to be this huge white elephant in the room that no one wanted to look at. But once it made a move, everything/everyone around it is near destroyed. It was always something at arms' length. The lethal mystery disease! And the only time I was keenly aware of cancer would be when the annual Walk for the Cure would come around.

I can't escape it. And not that this is a bad thing. But the difference is just notable -- from cancer being at arm's length to it being everywhere. I would like for others (untouched by cancer and hopefully never touched by it) to have at least half the awareness I have. Granted I have a hypersensitive awareness to it. It can no longer be that white elephant, or that mystery disease that everyone is afraid of. People can no longer think "it can't happen to me" because it does!

But in addition to the disease itself, I hope for heightened awareness to those of us living with it. I think it's safe to say that our population has grown exponentially over the past decade at least. We (those touched by cancer) exist and therefore should be acknowledged and can't be in the fringe. We're part of society and should be.

How many famous people got cancer last year? How many famous people got out of remission last year? How many famous people died of cancer last year? Now multiply that by at least 1,000,000 and that's how much more had died probably. Never mind those that are/were sick with it and living with it, like you and me and some we know. It's almost an epidemic.

So, it's ironic that the day wherein cancer awareness was supposed to be in focus just eeked by most of us -- like cancer just slowly creeps. The silent killer.

The good thing is that this seems to be an annual event:

"Each year on 4 February, WHO supports International Union Against Cancer to promote ways to ease the global burden of cancer"
Perhaps next year, it would be a "noisier" day. I'll certainly mark it on my calendar and see what kind of noise I can organize around the day.

04 February 2010

Caveats aka "The Fine Print"

Hi. First, let's get some things out in the open. Dry, I know. But, at least it's not in "fine print." I'm just trying to manage expectations. This is about as stuffy and rigid as I'll get. I promise. Here goes:
  • I'm not a cancer expert
  • I'm here only to relay my cancer experience
  • This is not a cancer resource blog
  • Although resources I've found useful will be linked from time to time
  • This is not sanctioned by any cancer organization or group. I'm on my own
  • Therefore, my opinions and conclusions are my own
  • If I say anything to offend your religious beliefs, I apologize. It does not come from a place of malice. I respect all faiths. But I will say what needs to be said.
  • I'm aware that there are many who have preceded me in this endeavor. My respect to them.
  • Therefore, I don't claim that what I say here is the end-all/be-all of how to live with cancer. I'm just sharing mine
  • This is my virgin voyage to the blogosphere, so please allow me my rookie mistakes
  • Lastly...this is from the heart

For an an intensely private person, this jump into the blogsphere was a scary, painful and daunting decision to make. Thanks to the very strong support and encouragement of loved ones, I am here. Because, in the end, what prevailed was my nagging desire to help (and connect with) others who may be similarly situated. I do believe that there is a reason for everything. Otherwise, I'd go insane. Perhaps this is the reason. We'll find out. This will be a learning experience for me as well. Hopefully, you'll find something helpful here too -- whatever it is.

With no apologies, I will protect the identities of those who are in my life, going through this journey with me. They will only be referred to by "initials and veiled references." But fret not. I believe that the story can be told without such details.

So......grab your towel and let's go....


.......and don't panic.... ;-)