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.  When I told people all the good news, the responses were always some variation of, “You must be so happy!”  And my response to that was, “I guess.”  I was unequivocally happy about the results of the  genetics testing.  I called Josh immediately after meeting with the geneticist and was in tears, knowing that I had not passed on a horrid disease to my children and that they would be safe, at least from the genetic form of colon cancer..  I could shut the door on that issue with some finality, at least until researchers discover another as-yet-unknown genetic mutation that creates a predisposition to colon cancer.  But there isn’t any additional testing that needs to be done (although the geneticist wants me to be tested for some rarer mutations if the insurance company approves the expense, but such mutations are extremely unlikely).  Given the lack of any meaningful family history of cancer, I’m fairly certain, this concern can be put to rest.  That makes me happy.

How I feel about my scan results are a little more complicated.  I supposed that had the results been anything else I would have been devastated, so I’m happy I’m not devastated.  But unlike the genetic testing, there is no finality in these results.  There will be more scans in a few months and then more and more and more after than for years to come, even under the best scenario.  The nurse practitioner, Natalia, told us the results the moment she walked into the exam room — Josh and I hadn’t even had time for small talk with her.  In some respects, we were not ready when we were heard that the scans were “excellent”, we didn’t quite know how to react.

Before I could process the good news, we were talking about my blood pressure (which was high that afternoon at 175/100) and discussing whether I should go on blood pressure medication since I was done with chemo for now and therefore the Avastin too (the drug wreaking havoc on my blood pressure).  “Oh, but you need to be on it now, because we’re not stopping,” Natalia informed me.  “What???” I asked.  “You’re going on maintenance chemo,” she declared matter-of-factly.  “What???  When???” I asked again, still completely caught off guard.  I had asked Dr. A.C. about whether I would be going on maintenance chemo at my alleged last round of chemo two weeks prior and he had said he reserved the right to make that determination depending on the scan results.  I had assumed that if the scans were clean, that there would be no maintenance chemo.  Natalia said we could start that afternoon or tomorrow.  I told her emphatically that I was not prepared for chemo that day and promptly started pacing the floor in agitation.  Josh and I got into a heated discussion/argument about whether I should start maintenance chemo that day or the next day or in a couple weeks for after our return from a trip to Paris we’d planned months ago as a post-chemo celebration.  He wanted me to start immediately because his default stance in fighting this cancer has always been to be as aggressive as possible — as he admits, this is an easy position for him to take when he’s not the one undergoing treatment.  I told him in no uncertain terms that I needed a break, that I was entitled to a break, that if I was going to keep going on chemo I needed some time off to go to the gym and rebuild my strength, to regroup mentally, to prepare for the next phase of this war.  Natalia interrupted to say she thought that a break would be fine and that we should wait for Dr. A.C. to weigh in.

Dr. A.C. recommended a maintenance chemotherapy regimen of the 5-FU and Avastin, both of which I’ve been taking.  Absent would be the Oxaliplatin (which I’m allergic to at this point anyhow) and its substitute, Ironotecan.  He wants to see a couple more clean scans in the next few months before taking me off of chemo completely.  In truth, ever since my supposed last day of chemo, I’d been extraordinarily anxious and worried, feeling like I had no protection anymore from the cancer, that I’d lost my security blanket.  Apparently, Dr. A.C. wasn’t ready to let go of the security blanket either.  Maintenance chemo from my very little research is not a universally accepted practice.  In the words of another cancer patient, “Some oncologists swear by it while others swear at it.”  The argument against maintenance chemo is the fear that the body will adapt to the regimen and then it won’t be available if and when a recurrence occurs.  There really haven’t been any definitive studies on this topic but I do intend to do more research.  That being said, I’m on the whole quite comfortable being on maintenance chemo based on the logic that if maintenance chemo is used when it is indeed working, then presumably that just increases the chances that there will not be a recurrence; stopping chemo and allowing the cancer to have a chance to grow unchecked with the expectation that the chemo will work again later when needed seems like a much more dangerous path.  Additionally, given how well I’ve tolerated Folfox (except for the last dose of Oxaliplatin, which won’t be administered anyhow under maintenance), I think maintenance chemo, a much less toxic proposition, is something I will tolerate just fine.  If I do have a recurrence, even after using maintenance chemo, Ironotecan will remain available to me.  And best of all, Dr. A.C. agreed that I could wait until after Paris to start.

The prospect of HIPEC still looms, despite the clean scans.  I sent my colorectal surgeon at UCLA a copy of the scan reports.  He responded within hours, saying that he is “cautiously optimistic” and this was the best result we could have hoped for all those months ago after surgery when looking six months down the road.  He agreed that maintenance chemo was a good idea and that he would also like to see a couple more clean scans.  He advocated again for an exploratory laparoscopy in a few months, a year out from diagnosis.  Depending on what the surgeon finds there (even if nothing), HIPEC  (the surgery I’ve mentioned in the past involving bathing the abdominal cavity in chemotherapy drugs and removing my peritoneum) remains a good option for me as a means of aggressive treatment.  It would require carefully weighing the pros and cons (including the complications that can arise from HIPEC both during and afterwards).  This is a question I will need to research carefully.  After the first line of defense, at least in the world of colorectal cancer, there are no black and white answers.  Everything becomes gray, from maintenance chemo to HIPEC to I-have-no-idea-what-else awaits.  It’s a frightening position to be in where one must make so many choices that will determine whether one lives or dies, often times considering contradictory opinions from the medical community.  So do you see now why the scan results, while bringing me certainly relief, didn’t exactly make me happy?

I will tell you though what does make me happy.  In a couple hours, Josh and I will be leaving for the airport to board a flight to Paris, without the children.  There, for seven days I won’t need to bathe or dress or feed or harass my children.  There, I will eat at 3-starred Michelin restaurants and walk along the Seine and immerse myself in beauty and spend time with the love of my life.  I am happy about Paris.  So for now, au revoir.  I will try not to check email or surf the internet while I’m away.  I will try to push cancer to the back of my mind.  I will live.



5 Comments (+add yours?)

  1. Tyler
    Feb 04, 2014 @ 17:19:06

    Oh Julie! Have a wonderful trip with Josh!


  2. Bill Ide
    Feb 04, 2014 @ 20:24:47

    Wonderful news. The only day that counts is today- have a great time in Paris


  3. Debbie whitmore
    Feb 06, 2014 @ 11:08:51

    Enjoy your special time together, you deserve it !!!


  4. Kit Grady
    Feb 06, 2014 @ 20:53:27

    Have a wonderful well deserved trip!


  5. Lisa
    Feb 21, 2014 @ 06:00:47

    YAY!! So happy. Only saw this now. Hope you are still in Paris 🙂


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