Insanity

For those of you who have read my blog faithfully, you know how brutally honest I strive to be here, how I endeavor to give voice to the most painful and, some might say, the most humiliating and unflattering aspects of myself as I flounder through the journey that is living with cancer – the rage, jealousy, bitterness, terror and sorrow. While I write and share the ugliest parts of this journey in a way that I could never verbalize accurately or completely for my own cathartic reasons (among others), I share also because I know that such brute honesty validates the dark emotions of those who feel as I do as they stumble through their own trials and tribulations, whether they be cancer related or not. And in that validation, you and I, we, regardless of whether we’ve ever met in person, find a connection, a oneness in our suffering that speaks to the universal human experience, which transcends class, race, culture, time and space. I want you all to know that it is to this connection, this sense of oneness, that I cling as the loneliness of this journey threatens to swallow me, especially during these past couple weeks. For the first time in this multi-year struggle with cancer, I find myself ever closer to a lonely insanity. More

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Isabelle (Part 1)

After the longest silence on this blog, hello all, finally. How I’ve missed sitting at my computer and allowing my many thoughts to flow out of me as they so have wanted to do, but life and a life that has been dominated by cancer and its darkness have trapped them inside my exhausted mind. So much has happened that I must break this blog post into two parts.  Part 2 will soon follow.

Life consisted primarily of taking care of my children after our Galapagos trip and all that that entails – cooking, cleaning, shopping, preparing for the new school year, fussing over my many new herb, succulent, flowering and carnivorous plants (the objects of a new obsessive yet unexpectedly very cathartic hobby I’ve adopted over the last few months) and, when I could rise above all the cancer crap, playing. There was no camp for the kids this summer since we are trying to save money in light of our significant capital outlay for the purchase of the neighboring apartment and the planned combination. It simply isn’t possible to think when they’re around, never mind write. (Who knew two little girls could fight so viciously and I have no idea how to fairly referee their battles!) The planned combination itself comes with a fair amount of work as the closing is set to occur at the end of this month and the finalized design is to go to the building’s board and the City for approval soon. I’ve been busy thinking about bathroom tiles and flooring, calculating costs and pondering the finer details of the proposed layout. How I wish sometimes, especially when I wallow in the darkness, my life were limited to all this mundaneness, that it were so simple and normal. But alas, for better or worse – I like to believe better – simplicity and normalcy have never been and will never be my destiny. More

Julie Fruit Flies And Julie Mice

In addition to using this blog as a means to keep family and friend updated on my medical status, as well as for my emotional outlet and philosophical musings, I feel a strong sense of obligation to share medical and scientific information here, to meaningfully assist others who are living with colorectal and other cancers, as well as those who do not have cancer (but who may be current or future caregivers or future cancer sufferers).  And I’m not talking about simple things like, get a colonoscopy if you’re 50 or earlier if you have symptoms or family history.  My goal is to provide you with information that is not common knowledge, that represents the cutting edge of science, as I understand that information and as it applies to me (and possibly you).  The truth is that the standard of care for those with metastatic colorectal cancer generally sucks, to put it eloquently, and that I will die if I’m treated with the standard of care.  I’ve yet to meet anyone who has been cured (meaning no evidence of disease for five years or more post-treatment) of colorectal cancer that has metastasized to the lungs (which is where my mets are currently, as far as I know).  I’ve met a number of people who have been cured of colorectal cancer that has metastasized to the liver, but not the lungs.  For whatever they are worth, my impressions of colorectal cancer that has metastasized to the peritoneum, small intestines, ovaries, brain and bones is even more depressing.  Of course, science is constantly evolving so what I know to be true today about the prognoses of those with metastatic colorectal cancer may not be true in a year or two or three.  And if I’m to have a chance at long-term survival, I must find a way to be part of that evolving science.  And perhaps, with a little luck and possibly a nudge from the Hand of God, I and my doctors just might make the right choices.   More

What Now???

It’s 3 o’clock in the morning so I’m going to keep this as short as I can. It’s been a few weeks since my last post, and I know some are wondering what is going on. I haven’t written because things have been crazed! First, there was Thanksgiving, during which we traveled for 5 days which entailed flying four hours and then crisscrossing the state of South Carolina and parts of North Carolina in a rental car over the course of eight hours. Then, the day after we returned, work on my kitchen/dining/living room began. For the last week, we’ve lived with dust, holes in walls and ceilings, exposed wires and steel studs, the dining chairs and coffee table hanging out in my bathroom, plastic covering our couch, my kitchen knives sitting on my bedroom window sill and Josh asking me where the paper towels are and me telling him I don’t know. I’ve been busy staring at the six squares in various shades of beige painted on my wall as I hold up a fabric sample of my soon-to-arrive new couch and a chunk of the textured faux wood, the same material from which my new entertainment unit is being constructed. I’ve been completed engrossed in conversations about what kind of LED lights to install under the kitchen cabinets and whether the contractor can mount the TV just a couple inches lower. And in what I feared would be the most stressful aspect of all this, I’ve been frantically trying to sell and give away all my dining and living room furniture through various means to make room for all the new furniture.

There was a surreal quality to all of these acts of incredible normalcy, like I wasn’t supposed to be standing there talking to my contractor about such mundane and trivial matters when I have cancer, like there was an unnerving incongruity between such ordinariness and the monumental questions of life and death I have faced and continue to face. I acknowledged the surreality, even embraced it, for in doing so I rejoiced in the act of living, ever so grateful to be able to do what I was doing, ever aware that it could all slip away from me in the blink of an eye, with the next CEA test, with the next scan, with the next strange pain.

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The Next Move

For the last couple weeks, I’ve been planning my next strategic move in my war against cancer. As you may recall, after my clean MRI scan in early October, my oncologist, Dr. A.C., gave me four options: (1) continue with full-blown chemo, (2) go on maintenance chemo of 5-FU and Avastin, (3) stop chemo altogether and proceed to a “wait-and-see” approach with monthly CEA testing and quarterly scans or (4) take the rather unusual step of undergoing a “second look” exploratory surgery to visually inspect my insides in what would be the most accurate and reliable form of monitoring (better than any scan). In light of the minimal risks involved with, and the tremendous amount of information to be gain through, Option #4 (which would serve as the basis for my next treatment decision), I decided to go with a “second-look” laparoscopy. That surgery happened on October 31 and revealed that not only was I free of visible disease within the abdominal cavity but that based on the washings or “cytology” in the medical parlance (i.e. fluid flooded into the abdominal cavity, sucked out and then tested), I was also free of microscopic disease, or at least such a result gave me a 50/50 chance of being free of microscopic disease. It was not a result I or Dr. A.C. or my surgeon, Dr. D.L. expected. We were all prepared for the cytology to come back positive so when it didn’t, even though the results are only 50/50 reliable, we were all thrilled.

I saw both my oncologist and surgeon this week, Dr. A.C. on Monday and Dr. D.L. yesterday. They both hugged me. They were both beaming. Dr. A.C. told me, “Good job,” and in that moment I felt his pride in me, not unlike a father’s pride in his daughter. Implied in the hugs and the smiles from my doctors was a profound delight in the victory we had won together, a self-satisfaction on their part in their technical skills and their compassionate humanity, a happiness, tinged with wonder, on their part, and a humble and grateful pride, on my part, in the resilience of my body, a resilience that had allowed it to withstand well the collateral damage of 25 rounds of chemotherapy and 2 surgeries. While I have often thought of how horrible and depressing it must be to be an oncologist, surgical or otherwise, I saw in my doctors’ joy then how certain victories make it all worth it.

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Second Look

This Thursday I will be undergoing an exploratory laparoscopic surgery (i.e. my surgeon will insert a camera into a little incision made at a prior incision site) to see whether there is cancer in me, whether the clean MRI results from three weeks prior were accurate. Yes, I have chosen Option #4 as per my prior post. It’s called a “second-look laparoscopy”, something that has rarely been done, and pretty much never done in the colorectal cancer context. I consider myself very fortunate to have this available to me as an option since my HIPEC surgeon is conducting an unprecedented study at Mount Sinai Hospital to determine whether such second-look laparoscopies affect survival outcomes. Although the study is yet to be formally underway and the ultimate findings are years away, I would think such a procedure can only improve survival outcomes, and that belief is exactly why I’m doing this.

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The Decision (And More)

I just wanted to provide everyone with a quick update.  Things are moving quickly, so quickly I feel like I can hardly breathe.  But maybe that’s a good thing.  No time to  over-think.    More

Some Bad News and Some Good News (Maybe)

This is going to be one of those just-the-facts ma’am kind of blog post because there is a lot of medical news to share.  It’s been a whirlwind, and an unexpected one at that because the last you all heard was that I was done with chemo and had clean scans  so one would have assumed that I wold have been in for a couple of quiet, boring months at least of remission, but not so; yours truly doesn’t seem to do quiet or boring very well.  Even as I type this, I’m still trying to process all the information of the last week both from an emotional and intellectual standpoint.  In the interest of providing the information as coherently and concisely as possible, I’ll try to spare you for now the emotions and the philosophical musings — tune in for the next installment of this blog for my usual musings.

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You Must Be So Happy…

Less than two weeks after my supposed last day of chemo, I went in for a PET and MRI scan, which were ordered because I had a PET and MRI three months ago when I was halfway through Folfox (which is the first line of defense chemotherapy for colorectal cancer).  As I’m quickly learning, treating cancer is all about scans and comparing one against another over time, hoping for regression or, best of all, resolution of spots that were suspicious on the last set of scans.  Well, as I described in CEA, PET, MRI…, I had two or three (depending on how you count) suspicious spots in October.  I know those of you who don’t follow me on Facebook don’t know the results and therefore are waiting with baited breath, so let me not keep you in suspense — my scans came back clean with resolution of the spots that were previously suspicious.  The day I received the scan results was also the day I learned the results of my genetic testing, principally for Lynch’s Syndrome which is the most commonly known genetic cause of colon cancer.  While the genetic testing on the tumor itself post-surgery had been negative for various genetic conditions, it could not rule out completely the possibility of a genetic predisposition.  So, I had my blood sent to a genetics lab in California and the results came back a few weeks later.  I went to see the geneticist before the oncologist that day.  “Hopefully, what I tell you will start off a trend of good news for you,” she said, “because you were negative for all the genetic mutations we tested for.”  So in sports terminology which my husband so loves to use, we were “2 for 2” that day.  I couldn’t have asked for anything better than that.  More

More Drama At Chemo

After my big surprise at Times Square (which I wrote about in my previous post), Cousins N and C and I made our way across town to the NYU Cancer Center for what was hopefully going to be my last round of chemo ever, stopping along the way at Korea Town for coffee for Cousin N and a muffin for me.  We met my friend and former realtor, the man who found my and Josh’s apartment, P.L.M. on the 5th floor.  P.L.M. is a gorgeous black gay man who looks like he could  be a model in GQ, seriously.  He also happens to be a riot who can entertain me endlessly with tales of his crazy exploits – definitely someone I wanted to have, together with my cousins, at what I hoped would be a celebratory last day of chemo.  As it turned out, I’m not sure I would call my last day of chemo “celebratory”.   More

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