My silence usually means that I’ve been busy living, not that something horrible is going on. So thanks for the notes of concern. I’m sure there will be a time when I will be so sick, I won’t be able to let you all know what’s going on, but that time has not yet arrived.

Rather, with the advent of spring, Josh and I and the girls have filled the weekends with trips and adventures – my time is too limited to sit around and do nothing, or even worse, obsess about cancer. Josh and I went to Phoenix without the children for a retreat (a work thing) where we paddled down the river and I got a massage while Josh attended meetings – it was fine, but a far cry from Hawaii. This past weekend we went up to the Catskills – think Dirty Dancing – and stayed at a friend’s lakefront house, where we all went to the kind of farm where the animals roam free and the children got to run into a hen house and snatch the newly laid eggs. I held a sheep for the first, and I daresay the last, time in my life, touched also for the first time the horns of cows and goats (who incidentally had a strange propensity to nuzzle Josh’s butt and other nether region), and rubbed a turkey’s head (weird feeling!). I kayaked on the lake (which I was told two bald eagles call home) under a glorious blue sky. Did you know I love kayaking? I kayaked in the San Juan Islands in Washington State for a week years ago, paddling for six to eight hours a day as we went from island to island, and then camped at night under the stars. I’ve kayaked along the shores of Antarctica in the glassiest waters. I almost never can see the bird or tree or whatever everyone else is ooh-ing and aah-ing about because I generally can’t see squat, but that doesn’t bother me when I kayak. Except for the time I kayaked in the mighty Hudson River right here in New York City, where I was terrified of being run over by the onslaught of ships (yikes! And thanks to my 6’2” friend and former competitive rower, Eric, for saving me!), I find that the soothing repetitiveness of stroking the water, the cleansing power of physical activity, the healing sensation of gliding, all of it calms my soul in a way that nothing else can. I’ve been trying to live the Lessons From Hawaii, trying to savor the present, trying not to think about the future too much, which means that I’ve stepped away significantly from the cancer community and have minimized the research. I cook (because I love cooking) and sit in on Mia’s violin lessons (because the Chinese Tiger Mom in me is roaring to come out!) and engage in fierce battles with Isabelle over pretty much everything it feels like these days (because I love her without end, as I tell her). For now, this balance between the cancer world and the non-cancer world makes me happy, and that’s all I really want. 

On some days, cancer and its specter dominate, while on others, cancer recedes into the background and I almost forget that I have an incurable disease and almost feel like a “normal” person.  Last week was filled with many days when cancer reigned. 

Last Monday, I went in for my triweekly Avastin infusion, at which Dr. A.C. and I decided it was time to have a PET scan given my spike in CEA of three weeks ago. My last scan, a chest CT and pelvic and abdominal MRI, had been two months prior, so it was time for another investigation anyhow. We decided on a PET because it would give us another type of image and would be able to detect any bone metastases (although the quality of the chest imagine would be inferior). I hadn’t had a PET scan since last June, at which time I had been clean. A part of me fantasized about the PET now revealing nothing, no lung mets, just like last June. But alas, that was just a fantasy, a manifestation of fanciful hopes.  The scan happened last Thursday and I received the results on Friday.

On Friday morning, hours before I was to see my oncologist for the scan results, while I was walking with the kids to school, I remarked that the older kids in front of us on the broad sidewalk were riding scooters that were different from their scooters. Mia noted that the older kids’ scooters have only one wheel in the front (unlike the two wheels at the front of her and Belle’s scooters) and that “you have to stabilize on your own.” Then Belle agreed with, “Yes, you have to find your own stability” and how she was good at “stabilizing”. I laughed, marveling at how different my children’s English language acquisition is from what mine was. At age 5.5 (Mia’s age now), never mind Belle’s age of 3.75 years, I assure you I didn’t know the word “stable”, “stabilize”, “stability” or any word related thereto; I was just barely trying to learn the rudiments of English.

Because my children are prescient, I wasn’t surprised when my oncologist told me the scans showed no change; they showed I am stable. I also learned that my CEA had dropped five points from 20 to 15 as of Monday, over a three week span. Considering I had seen a five point increase in my CEA when just on the Xeloda and Avastin, I do believe the Celebrex is helping. My last CEA jump from 13 to 20 had occurred after I was forced to take a two-week break from the Xeloda while in Hawaii because of the severe hand foot syndrome I was suffering. This most recent reading was taken after a four-week resumption. Unfortunately, my hands have begun to develop cuts again so my oncologist instructed me to take another break from the Xeloda, for a week. That break is supposed to end tomorrow, but I’m not sure my hands are sufficiently healed. We talked about altering the schedule for taking the Xeloda from five days on and two days off to seven days on and seven days off (which is the more conventional schedule), but I proposed four days on and three days off. He said, that’s not a schedule people do, that we would be doing our own thing if we tried it. He quickly added there was nothing wrong with trying our own thing, but I had to understand that I was basically going out on my own limb. I often feel like I’m experimenting on my own body, that neither my oncologist nor anyone else has the answers, and so I’m left to figure things out based on intuition and logic. When you face Stage IV cancer, it often is an exercise in self-experimentation, of trying this and trying that until you — if you do at all — find something that works, and hope whatever that is working will work for a long time before the cancer gets smarter and mutates to resist whatever you’re doing to it.

Oh and the Avastin is making my blood pressure skyrocket so I need to get that under control. I’ve been ignoring the problem for awhile but I can no longer. Elevated blood pressure seems like a small nuisance when compared to cancer, but if I gets too high, they won’t give me Avastin anymore. I can’t have that happen, can I?

My oncologist felt the stable scan was a good result, that keeping me stable while optimizing my quality of life is a “bridge” to something, a drug, a clinical trial. My cynical side, the one that thinks it knows the state of colorectal cancer research and hates the word “hope”, wanted to blurt out, “a bridge to nowhere, you mean” but I refrained.

While I recognize that a stable scan is far better than a scan that shows progression, I’m not sure I want to stay on this bridge, that involves maintenance chemotherapy and this kind of stability. I’d like to see “regression”. After I left his office, I wondered about whether I should go back on Folfiri, the intensive chemotherapy regimen I was last on that really produced a lowering of my CEA and which I tolerated fairly well, plus the Avastin, plus the Celebrex. While I doubt that that combination would make all the lung mets disappear, perhaps it would make enough disappear so that I could become a surgical or radiation candidate, and then I could go back on this maintenance protocol I’ve been on for the last few months. Of course, going back on Folfiri would mean sacrificing to some degree my quality of life, as well as much of my hair, but maybe it would be worth it. I’ve sent my oncologist an email describing my proposal and asking him to give it his due consideration so that he can give me his thought-through opinion when I see him later this week.

I did instruct Dr. A.C. last Monday before the scans, however, that his job was to keep me healthy enough to go to the Galapagos Islands this summer and that after that he could do whatever he wanted.  Going back on Folfiri before my trip might be counter to those instructions. My in-laws have generously offered to take the girls for a week or so this summer, giving me and Josh enough time to fulfill one of my long-held dreams, to go where Charles Darwin went 150 years ago and where the theory of evolution was born, to walk amongst the hundred-year-old tortoises, to swim and maybe kayak in those equatorial waters. Ever since I learned about Charles Darwin and the Galapagos Islands in seventh grade, I’ve wanted to go. I would love to take the girls, especially Mia who will voluntarily sit through wildlife documentaries, but I fear they’re a bit too young and such a trip won’t be so easy. But Josh is willing and I’m relatively healthy right now. I don’t know how long I will remain healthy so now is the time to do this. The Galapagos Islands is among the last items on my travel bucket list and I’m determined to make it happen before it’s too late.

My girls were unknowingly wise when they said, you have to find your own stability. I am working to find my own stability when it comes to balancing a life that involves cancer and fully living too. Tortoises, sheep, kayaking, violin lessons, cooking, mothering, doctors’ offices, IVs, scans, infusions, drugs, these are all parts of my life to which I must bring balance and a stability that makes me happy. It is a daily struggle, but a struggle that I am conquering, at least today.


4 Comments (+add yours?)

  1. Kris
    May 05, 2015 @ 13:55:52

    What a strange situation this must be. But it sounds like you are doing what you need to to cope with it and enjoy your family and the opportunities you have. I wish you didn’t have to be facing all this, but I admire your attitude and how honest you’ve been!


  2. Domitilla
    May 05, 2015 @ 14:23:23

    Good, Julie. Today is all that matters. Everybody’s future is just a series of todays. Let’s celebrate today! Love, Domi ❤


  3. The Astonishing FartMan
    May 15, 2015 @ 19:33:04

    “Josh’s nether regions.” That’s hilarious! (That should be sufficient to discourage any would-be “Second Slutty Wife.”)


  4. The Astonishing FartMan
    May 15, 2015 @ 22:49:46

    Oops! That didn’t come out right. I think I meant “Slutty Second Wife.”

    Galapagos sounds enticing. But I have a theory that one should always leave something undone, so that the universe will always have a reason for one’s existence because one has unfinished business. That’s why I’ve put “clean out the garage” on my bucket list.

    (Kidding aside, thanks for the update.)


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