Living

A week after my last post, I had a chest CT and an abdominal and pelvic MRI. It had been six weeks from my PET scan in early January, which as you may recall, was “mixed” in that there was some growth, some stability and some regressions in the various tumors in my lungs. My oncologist and I had agreed that notwithstanding the growth we would continue on the same treatment of weekly Erbitux infusion and 5-FU push for the time being but that we would rescan in six weeks as opposed to the more conventional three months. The February scans showed essentially stability as compared to the January PET, but what was more alarming to me was that it showed “significant” growth from the October CT and MRI.

The different types of scanning technology offer different pros and cons, which I don’t pretend to fully understand. I generally get PETs once every six to nine months because they can detect disease in the bones as well as metabolic cancer activity in non-solid areas (e.g., the peritoneum) and cover a more expansive area from neck to mid-thigh. While there is a CT scan connected with a PET, the image quality is inferior to an actual CT and MRI.  All this is by way of explaining that comparing a CT/MRI to a prior CT/MRI is more accurate than comparing a PET to a CT/MRI. Therefore, the change from October to February was more relevant (and disturbing) to me. February’s scans showed a couple new tumors and growth of about one to three millimeters in a few other. The MRI also showed an enlarged lymph node in my retro-peritoneum that could be cancerous or benign inflammation – radiologists can’t seem to agree on what it is. As I had suspected, the Erbitux and 5-FU are starting to fail, if not already completely failing. My oncologist and I agreed, however, that we would hold off on changing treatment until I returned from my upcoming vacation, after which I will rescan and we will decide on the next treatment. The last thing I want to deal with on my vacation is unforeseen side effects or complications.

I came home from that appointment, dejected and upset (although not as upset as I have been in the past – you get used to getting bad news after a while). I was lying on the couch when I asked Isabelle to come over and give me a hug. This is the conversation we had: More

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Ghosts

I’ve been thinking a lot about ghosts in the last few weeks and more so in the last couple days. It’s part of trying to figure out what happens when we die. And that in turn is a result of not such good scans a few weeks ago and more recently my bout of severe diarrhea that led me to feel like death.

The PET scan was “mixed”, meaning that it showed some growth, some stability and some shrinkage. To me, it proved what my rising CEA had indicated – that the current Erbitux with 5-FU bolus injection is starting to fail. It certainly is starting to fail in those parts of my lungs where there has been growth. My oncologist told me that the “conventional oncological approach to a mixed scan is to continue with the current treatment,” which I understand; milk the drugs for as much as you can before they completely fail. So I agreed to continue but we also agreed that my next scans would be pushed up to six weeks as opposed to the usual three months. My next scan will be next Tuesday, an abdominal and pelvic MRI and a chest CT, starting at 7:45 a.m. I’ll know the results the same day when I see my oncologist so we will then discuss based on those results what awaits me next in the wonderful realm of limited treatment options. More

Pride

My long absence from this blog is partly attributable to the business of my life, i.e., raising two young children, overseeing the looming renovations, spending quality time with my husband and in general taking care of home and hearth. For example, on a recent Thursday, I started my day with dropping the kids off at school; then I went to the Apple Store to make a product return; then I attended a meeting with my architect and designer; then I picked up Isabelle from school and then dropped her off at dance class; then I went to pick up Mia at the bus stop, but then the bus got into a minor accident so I had to go pick her up from the accident site; and then I had to rush back to oversee a kick-off meeting for the renovations with my building’s property manager, super, my contractor and all the subcontractors and my architect. As I have often said, I have no idea how I ever had a paying job. Then, there’s also dealing with the side effects of treatment which has made me need sleep as never before; thus, no more staying up late or getting up in the middle of the night to write. More

Isabelle (Part 2)

Perhaps one of the most frequent questions I get pertaining to my cancerous condition, after “How are you?”, is “How are the girls doing?” As I’ve written before, Josh and I do not subscribe to the belief that our children are fragile flowers and that they will simply wilt under the weight of my incurable and likely terminal illness. We believe in honesty and that hardship, when confronted with love and support, can only engender strength and resilience. And so my children are very aware that I am sick, that I will likely die. Slowly, as they have grown older, they have understood more and more what “death” means, although of course I doubt they have a true understanding of what my death would mean to them emotionally; that understanding can only come when they experience first-hand the grief of losing their mother. And yet despite their knowledge of my illness, they are amazingly well-adjusted children who are full of joy and love (and well-behaved too, at least for other people if not necessarily for me and Josh all the time; I am told public behavior is what really matters). The school psychologist frequently observes them in the classroom and we chat from time to time; she praises me and Josh for how we have handled the situation and I draw so much reassurance from that praise.

As their mother, I see in so many moments how they are processing the unique reality of their mother being sick and her likely early death. Such moments are truly fascinating and fill me with such pride as I watch them cope with forthrightness, courage and strength.  More

How Far I’ve Come

The bags are packed and everyone is sound asleep.  I love this quiet time in the wee hours of the morning when I am alone with my thoughts, when no one disturbs me with his or her needs and wants.  In these hours, I sit alone reading or watching TV or writing.  The silence of the night that envelops me allows my mind to go to places to which I cannot go during the brightness and noise of the day.  My mind ventures into territory that only I can know, to my innermost self, to my past and my future, to those places of regret and sorrow and joy and longing.  And yes, it is in these hours that I often feel I am truly beginning the journey away from my children and husband and this life, toward the next life or the Great Beyond or the Undiscovered Country or whatever you want to call “it”  Sometimes, my thoughts frighten me but mostly I treasure the insights that come from these rare and special minutes and hours.

On this early morning,  I want to invite you briefly into my contemplative world and so I write.  More

The Hand of God

[Now that the kids are back in school and the Cleary fundraiser is over (which was an incredibly special experience for which I do not yet have the words to share with you), I hope to be writing a lot more again. This is the long-anticipated – I’m being facetious – part 2 of the story of my cancer diagnosis, continued from A Nightmare. This post begins with some weighty, philosophical thoughts, but bear with me – you will soon know the next part of the story.  Part 3, the final part of this story which should be closely read with this piece, will be forthcoming soon.]

I follow no institutionalized religion and have no patience for proselytizing, but I do have faith in a higher power – most of the time anyhow. In my elusive moments of faith, when I am alone and still and no one asks me to verbalize or justify that faith, I know with a certainty that I could never explain that the hand of God has touched my life. It was that hand of God that allowed me to live when I should have died at two months of age. It was that hand of God that took me out of the desolation of Communist Vietnam (made even more desolate by the very fact of my congenital blindness) to this greatest country in the world where everything is possible. It was the hand of God that led my mother (who spoke no English and knew no one in this new country) to take me to one of the finest eye institutes in the world where sight would be given to me (more sight than anyone would have expected after four years of blindness and optic nerve damage). It was the hand of God that gave me the innate tenacity, intelligence and drive to overcome the often times demoralizing aspects of seeing the world so imperfectly with my embarrassing large print books and magnifying glasses and constant sense of humiliating dependency and incapacity. It was the hand of God that, despite the utter absence of guidance and expectation both at home and at school and the other crippling effects of poverty and cultural ignorance, led me to make decisions and take action quickly based on intuition alone, resulting in me attending the top ranked liberal arts college in the country (where I paid virtually nothing for that education) and then Harvard Law School, where I lived and studied with people much, much richer, smarter, more articulate and more accomplished than I, but who, despite intimidating me, drove me to be more than I ever dreamed possible.

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A Nightmare

[I’ve needed to write the story of my cancer diagnosis for a long time, to work through both the painful and beautiful – yes beautiful – memories of that time. It is a long story, so this post is part one.]

Today is the one year anniversary of my cancer diagnosis. I wonder why it is that the memories of that most traumatic time of my life have not faded with the passing of the months, weeks, days, hours, minutes and seconds, why it is that, despite my senses being bombarded by a plethora of new experiences since those early weeks that have been traumatic and overwhelming in their own right, the images and feelings I associate with being told that I had cancer have an unparalleled and unprecedented grasp on my consciousness. The clarity of most memories dull with time, even the good ones that I want to hold close for all my life, like falling in love with Josh and seeing my babies for the first time. But the recollections of the pain and shock and all the minute details of my cancer diagnosis just won’t leave me for I’ve forgotten nothing about that time. Perhaps, this is so because it has only been a year. Perhaps, this is so because the story of how I came to be diagnosed is not your run-of-the-mill cancer diagnosis tale (to the extent there is such a thing); no, mine is a story that borders on the incredible. Perhaps, this is so because there can be nothing more momentous or memorable than facing death. Perhaps, this is so because I have some kind of post-traumatic stress syndrome. There’s a reason why war veterans wake up screaming in the middle of the night as they struggle unsuccessfully to forget the details of their horrors that visit them in their nightmares. Now, I am a soldier of my own war with my own demons to battle, the worst demons being the memories from a year ago.

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The Secret

[Continued from previous post]

There’s a Secret I’ve been harboring for years, something I’ve known from the time I was a baby in that part of the soul that remembers all trauma even before memories can be retained by the consciousness; it was then confirmed to me ten years ago. I’ve let the Secret out over the years, little by little to a few members of my family and friends, but it certainly isn’t public knowledge. I’ve always known that at some point I would release the Secret into the world as part of my healing process; until last July I just never thought that healing process would have anything to do with cancer. The Secret has hurt me in ways that few can imagine. Ever since my diagnosis, I’ve redoubled my efforts to find a lasting peace with the Secret, feeling like doing so would yield hidden truths that would aide me in this war against cancer.

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Obstruction

The fun just won’t seem to stop over here in my little war against colon cancer – and if you haven’t figure it out already, I’m being sarcastic when I say “fun”. If you’re not connected with me on Facebook, then you wouldn’t have heard about all the excitement. After a rather uneventful infusion day last Monday (the first round of a regimen called Folfiri), my stomach started cramping the next day. Cramping, together with diarrhea, is a common side effect of Folfiri, so I waited for it to abate over the next couple days as the chemo worked its way through my system – but it didn’t abate. Instead, it got worse. I dug into my stash of narcotic painkillers left over from the HIPEC surgery; they barely made a dent in the pain. I couldn’t sleep Thursday night, asked a neighbor to take Mia to school on Friday morning as I rolled around in pain and suggested to Josh that it might be a good idea for him to work from home that day just in case. My colon cancer friends had told me about Lomotil and other drugs to help with the cramping while on Folfiri but I’d held off on asking for a prescription, hoping that the pain would subside on its own and perhaps suspecting in some intuitive part of me that my pain, as severe as it was, was not normal and would not be addressed by a simple drug. I’ve known agonizing gut pain before (excluding childbirth which belongs in its own category of agonizing pain), when I had a gigantic tumor completely obstructing my colon and when my colon was about to rupture and spread cancer throughout my body; the pain that I was now feeling wasn’t all that different from then – spasmodic cramping accompanied by lots of belching and occasional nausea and attempts at vomiting. So, I’ve learned to take pain, especially that kind of pain, very seriously. I called my oncologist’s office first thing Friday morning.

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Hope Everlasting

On the eve of my HIPEC surgery, I wanted to write about hope.  It’s a word that’s bandied about so frequently when you have cancer.  “You cannot give up hope,” Josh has told me many times.   “There’s always hope,” more than one cancer survivor has told me.  People have recommended to me the book (which I’ve read), the Anatomy of Hope, one oncologist’s account of how important it is to maintain a realistic hope, littered with the occasional tale of a patient’s improbable defeat of cancer against all odds.  The fuzzy concept of hope, this feeling like something desirable can be attained, is so prevalent in the world of cancer, that it seems to me like it takes on a holy quality that people embrace purely based on a religious-like faith, like if you have it, it will sustain you through your darkest hours and maybe even cure you.  Because the word is invoked so often, hope can also frequently feels like a cliché.  After all, how can you say there is always hope when clearly at some point death is imminent – where is the hope then?  If you know me, or even if you have read just one of my blog posts, you know that I’m not one to accept triteness and clichés.  I analyze everything in an effort to determine whether the cliché is some empty platitude or whether it actually contains a profound idea worth incorporating into my world view.  For example, I considered early on in Invictus the commonly-uttered statement (and variations thereof), “Everything happens for a reason”.  This post is of a similar vein, reflecting my months-long contemplations about this illusory sentiment of hope that people seem to love so much without really understanding why and which people seem so insistent that I should have.  Must I really have it?  Is there indeed always hope?  Is it truly a positive force?

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