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.

I returned from Paris last Tuesday, which incidentally was a magical trip without the children during which I remembered why I fell in love with my husband eight years ago and if possible grew to love him even more; it was such a necessary getaway after enduring the stresses of raising small children, not to mention those of living through a serious cancer diagnosis.  I will share my stories and thoughts about Paris in a separate post as well.  Two days after my return, I went in for my first round of maintenance chemo.  It was good to see that the NYU Cancer Center was open for business as usual notwithstanding the ongoing snow storm that would ultimately dump a foot of snow and that had made it impossible for 75% of the scheduled patients to come in for treatment.  But I was undeterred, eager to once again receive the protection of chemo after a two week break.  I had misgivings about being off for even those two weeks, for despite my clean scans I was never quite happy with my CEA level — 4.0 before the 10th round and 4.3 before the 12th round, within the range of normal but never low enough for my comfort.  It  seems to me that people in remission usually have CEAs in the 2 or less range.  It turns out my misgivings were well-founded.  As I finished up at the cancer center, my nurse told me the results of my CEA test that day, something that usually takes a few hours.  5.9, she said.  5.0 is the upper limit of normal.  I called Dr. A.C. on his cell phone and we had a very brief and blunt conversation.

“Did you see my CEA?” I demanded.  He hadn’t since it had just been released.  He looked and saw for himself the number.

“I’m not comfortable staying on maintenance chemo,” I declared.

“I agree,” was Dr. A.C.’s response.  “I suspect there is disease that the scans cannot pick up.”

“That would appear to be the case,” I agreed.  “Is it time for me to do HIPEC?”

“I don’t think it’s going to help because the spots that lit up three months ago on your scans were in the retro-peritoneum so HIPEC wouldn’t address those areas.  But maybe a HIPEC surgeon would tell you differently,” he surmised.

“Yes, but you’re assuming that that’s where the disease is, which we cannot know given that the scans are clean,” I countered.

We agreed that it would be prudent for me to get at least one surgical consultation in before the next round of full-blown chemo.  I hung up the phone and called Josh to tell him the devastating news.  I said I wouldn’t get into the emotional aspects but suffice it to say for now that when the nurse told me my CEA was 5.9 I had an absolute conviction that I was going to die in a few years, that I would not live the life I’d always planned to live.  It was after I spoke to Josh that I sat there in the cancer center, done with maintenance chemo but unwilling to go home to look into my children’s eyes, and cried and cried and cried.  No one was with me so the wonderful nurses came to comfort me, saying those encouraging things that they’re supposed to say and which I didn’t believe because I couldn’t shake the absolute conviction that I would die from this disease.  My body had not responded fully to the leading drugs designed to kill this disease.  I had been on a two week break from chemo and I seem to have had disease progression.  To me, I was looking at a chemo for life scenario where drug after drug would be used to try to keep the beast at bay. There was no reason to believe that a second or third or fourth regimen would be any more successful.   And surgery — what was the point of doing surgery when we couldn’t even see where the disease was?  It was another blow in this war and the most painful one yet.  I cried for many days afterwards, allowing my mind and heart to go to some very dark places where I felt the utter futility of fighting, where I felt like I should perhaps give up so that my husband and children could move on with their lives.  I’d expected to have at least a few months of remission and to reclaim bits and pieces of my old life, but that was not going to be.  And if I couldn’t have even that small reprieve from disease I saw no reason to believe that I would be granted the greatest reprieve of all in the form of a cure.

Although Josh was also upset, he couldn’t understand why I was putting so much weight on my CEA going up by 1.6 points.   The truth is that CEA is a good marker for me, which isn’t the case for everyone.  It has always trended in a consistent manner with the different stages of my treatment — 53 before surgery, 26 before chemo, 16 halfway through chemo, 4 near the end of chemo.  If I can consider any aspect of this to be fortunate, I am fortunate to have a tumor marker that seems to be reliable because in such instances it often is an indicator of progression of disease which allows one to get a head start in treating the disease rather than waiting until the next scan shows a tumor that has grown large enough to be detectable.

The weekend passed and slowly I pulled myself out of the darkness, forced myself to go to the gym and meet up with friends and otherwise go on with the business of living.  I contacted the leading HIPEC surgeon at Mt. Sinai Hospital, a surgical oncologist who was recommended to me both by my oncologist and another colon cancer patient.  NYU doesn’t do HIPEC surgery really but apparently Mt. Sinai does a lot of it and this guy, Dr. D.L. has done 240 of them and there’s an extensive team of other surgeons there who also do it.

So Josh and I met with Dr. D.L. at Mt. Sinai this morning.  If one can judge an institution and its doctors by the way it looks, Mt. Sinai would certainly be top-notch.  I always assumed that all hospitals in New York are kind of rundown and dingy (unlike the beautiful facility at UCLA where I had my hemicolectomy).  Apparently, my assumptions were wrong.  The building in which I met with Dr. D.L. was brand new and gorgeous.  I know these things seem superficial but in my growing experience with the medical world, these things matter.  The doctor himself was impressive, obviously very intelligent and articulate, well dressed and put together, forthright and most importantly, caring.   We talked for a long time and covered a lot of ground.  I felt that everything Dr. D.L. said was generally good news and was ultimately a lot more optimistic than I was expecting.  Here are the bullet points.

  • HIPEC is a procedure in which the abdominal cavity (which is surrounded by a leather bag-like organ called the peritoneum) is flooded with a chemotherapy drug that is heated at 42 degrees Celsius for 90 minutes.  Heat has itself a killing effect on cancer cells and the drug that would be administered would not be anything I receive during infused chemotherapy — it is too toxic to be administered intravenously but is ideal in 98% of all cases for HIPEC and other limited localized treatments in other areas.  Depending on the extent of the disease found, it can involve the removal of the peritoneum and parts or the entirety of other compromised organs.
  • HIPEC is ideal for someone like me who is young and had but one peritoneal metastasis.  In an older patient who had for example mets to the liver or lungs, HIPEC would be of limited use because HIPEC would not be able to address anything outside of the peritoneal cavity — the lungs and liver are outside the peritoneal cavity.  There is no point in subjecting someone to surgery when the procedure would have minimal benefit.
  • HIPEC must be done in combination with intravenous chemotherapy.  Because of my extensive lymph nodal involvement (meaning I had a lot of cancerous lymph nodes), chemotherapy would address those areas of concern in a systematic manner.
  • As with all cancers, risk of recurrence is always most likely the same spot as the original metastasis or metastases.  It is as my first oncologist at UCLA said months ago when Josh expressed concern about a benign spot on my liver becoming malignant, “I don’t think the liver is going to be of concern in this case; it’s always going to be the peritoneum that you have to monitor.”  The assumption is that the cancer cells are most active in the organ where it once took hold. I think this is one of the strongest arguments for having the surgery.
  • Because of the thin nature of the peritoneum, scans are not really effective at picking up peritoneal metastases as opposed to mets to solid organs like the lungs and liver.  I have to draw some small comfort and hope here that my peritoneum is relatively clean based on my CEA trends.  With a single one centimeter metastasis before surgery, my CEA was 53.  Even after all visible signs of cancer were removed from my body (including that single met), my CEA was 26.  Therefore, as a matter of pure logic, given that my CEA is much lower than 26, it stands to reason that there should be no significant peritoneal growth.
  • Also because of the thin nature of the peritoneum, chemotherapy administered intravenously is not as effective in reaching the cells in the peritoneum.  HIPEC with its direct application would be much more effective.  This is another very compelling argument in favor of HIPEC.
  • Dr. D.L. dispelled for me some of the myths around HIPEC as a brutal invasive long surgery filled with potential complications.  Length of surgery and any complications resulting therefrom have a direct correlation with the extent of the disease.  Those people who have 12-hour HIPEC surgeries with the huge incision down the lower half of their torso and two-week hospital stays have a lot more disease than I likely have.  For people like me (assuming I’m relatively clean), I would be in the hospital for maybe 4 or 5 days.  In fact, it may be that if my disease is minimal or not even visible, the entire surgery could be done laparoscopically.  If that were the case, I would be dancing up and down.
  • In Dr. D.L.’s words, my elevated CEA isn’t something to “freak out” about but it is something of concern.  He suspects that there are cancer cells that developed a resistance to the last chemotherapy regimen.  He recommends that I proceed with the new chemotherapy regimen (called Folfiri) for four or five rounds and then have the HIPEC surgery three weeks later.  I would need to be off Avastin, one of my drugs, for at least four weeks before and after surgery and off chemo for three weeks after surgery.
  • He would initially do a laparoscopy to investigate the terrain so to speak.  It would be my decision as to whether I would want him to proceed immediately to do HIPEC or if I would want to have a conversation about his findings before he goes back in.
  • While there is a 4% mortality rate with HIPEC, that statistic takes into account everyone, including old people in poor health.  That statistic would seem to be irrelevant in my case.

My first surgeon, Dr. D.C. was always a fan of me getting HIPEC.  Josh has always been a believer of HIPEC.  Obviously, Dr. D.L. is a believer too.  Understand though that while it’s a widely accepted procedure, it is not universally liked.  Sloan Kettering for example does not recommend HIPEC (although they are in the midst of a study to determine its effectiveness).  Josh and I need to do some more research into HIPEC.  I’d like to understand the arguments against a little better.  Dr. D.L. will also speak with my oncologist and Josh and I will be very interested to hear my oncologist’s reaction to all this.  He is a believer of HIPEC too and works with Dr. D.L. frequently so I suspect he will be onboard with Dr. D.L.’s recommendations.  And then if we decide to move forward, we need to make sure that Dr. D.L. is the best we can find.  HIPEC devotees believe that it offers for those with peritoneal metastases the only real shot at long term survival.  Of course, Josh’s last question to the doctor was some variation of the question he always asks every doctor and which I can never bring myself to ask, “Do you believe she will survive this and live for a long time?”  “Definitely,” was Dr. D.L.’s response.  But he cautioned me that this is just the beginning of my journey and that I have a long road ahead and that I was going to have many more blows like the one I had last week.  So chin up, I must say to myself.  We fight on.

I ask of you to keep praying for me and my family if that’s something you do.  Or do whatever it is that you do if it’s not praying.  I ask you to believe in my long term survival even when I do not and cannot.  I ask you to hold me up when I want to collapse from the latest defeat.  In the next weeks, months and years, I will be making many decisions that will affect whether I live or die because of this disease, decisions that while influenced by the opinions of the medical community as well as my brilliant husband, will be mine alone to make.  I need to believe that I will have the intelligence, clarity and wisdom to make those decisions that will very likely dictate whether I will be around for my little girls.  Pray that I will always have such insight and that the hands who will treat me are steady and strong. Thank you as always for the unfailing support.

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16 Comments (+add yours?)

  1. Mae-Ann
    Feb 21, 2014 @ 16:04:57

    Yes, Julie, I will pray for you and your family. Stay strong as always. All my love and positive thoughts to you…

    Reply

  2. Tanya
    Feb 21, 2014 @ 16:22:09

    I love you so much Julie (and I mean that even though you must wonder how that could possibly be true). I wish more than anything that you did not have to be alone when you got the news, although perhaps that made it easier to cry and cry and cry, which I sometimes find is the only thing that eventually makes me feel better. Prayers are being sent up!

    Reply

  3. Jane
    Feb 21, 2014 @ 17:02:29

    Julie, I’m praying for you and your family (and so is my church). You are strong and smart and I know you will have the tools within and all around you to fight this.

    Reply

  4. barbarablackford
    Feb 21, 2014 @ 17:22:20

    Julie – you and your family are in my thoughts. Hang in there . . . Jane is right . . .

    Reply

  5. erika hanson brown
    Feb 21, 2014 @ 19:48:41

    Oh, Julie……
    I suffer with you, I hope that you know. I just wish that I could carry the entire burden for you.
    Love to you
    erika

    Reply

  6. Tyler
    Feb 21, 2014 @ 21:43:36

    I am so glad that you had a wonderful time in Paris. David and I were very happy that you and Josh got time together and of course romance. Your return trip home and news of another battle must have caused whiplash. Hang tough kid!!!!

    Reply

  7. Maxine Jaramillo
    Feb 21, 2014 @ 22:08:17

    Dear Julie: Kelly, Felicia and I have you in our prayers. We have such deep respect and love for you. Keep fighting and you will win!
    Love you.

    Reply

  8. greenmonkey27
    Feb 22, 2014 @ 03:06:23

    Julie, you have my prayers and my respect. Your last paragraph is profound and deeply moving. I will hold it close to me. love and light to you and your family, Shannon

    Reply

  9. Belle Piazza
    Feb 22, 2014 @ 19:44:34

    I read your blog Julie and just want you to know Im here for you if there is anything I can say or do to help.

    Its so hard when our friends are so far away.

    The rising CEA is of concern, of course – but please dont completely freak out just yet. Yeah right, I know. That ship has sailed. Please remember – this is a marathon, not a sprint. You are strong and this is just one more bump in the road for you. A sizable, nasty, bone rattling bump – but a bump nonetheless.

    We all want to know RIGHT NOW exactly what is going on with our cancer and then immediately have a plan in place to deal with it. Sadly, cancer hasnt read the rule book and doesnt play by those rules. It may be awhile before the cancer actually reveals itself as to where it is growing and how quickly (or not). You have been beyond thorough in your researching of HIPEC and the various treatment options and I know you and your team will come up with an appropriate plan. I have nothing to add because I think youre handling all of this extremely well as far as that goes.

    While youre working through all this, I hope you will try to take a deep breath and try to be patient with yourself. A stage 4 diagnosis doesnt always mean a death sentence and it certainly doesnt mean an immediate death sentence. Its taken me a long time to get my head around the acceptance of my situation. Yes, I will most likely die from this disease. My children will be left without a mother. Yes, that sucks. It really, really, really sucks. But Im not dead yet and Im not going to be dead tomorrow. So for whatever time I have left, Im going to do the best I can to enjoy the time I have left. Yes, it sucks that I have had to give up so much and there is so much that I cant do. But as one door closes, another one opens. It may not be a door I was ever interested in before, but with limited options – I will give it a try.

    Having to let go of certain aspects of your life that cancer impinges on is really hard. It is a grieving process for sure. I often wonder what my life would be like today had cancer never entered my world. What would I be doing? What sort of physical and mental condition would I be in? Ill never know. Life gave me lemons and Ive done the best I can to make lemonade. This is not the path I would have voluntarily chosen, but its the cards Ive been dealt. So I make the best of it. I have my bad moments, my bad days, even my bad weeks. But Im not ready to give up yet.

    We do the best we can with what we have at the moment. Stay strong. You can do this. Wherever this leads, you can do this.

    Reply

  10. Victor
    Feb 22, 2014 @ 20:19:36

    Julie, our thoughts and prayers are with you. You are such a fighter that there is no reason for you to think that you won’t win this. Never give up; all of your friends and family will be there with you.

    Reply

  11. Faith
    Feb 22, 2014 @ 20:54:48

    Praying….

    Reply

  12. sonja olsen
    Feb 23, 2014 @ 07:43:51

    Julie, you and your family are in my prayers. I know you will beat this. Keep up the optimism- let the healing hormones beat out the stress ones.

    Reply

  13. Bill Ide
    Feb 23, 2014 @ 21:05:15

    Your enduring spirit will prevail over the unwelcome bumps in the road. You have many of us cheering for you. Bill

    Reply

  14. Valerie
    Feb 25, 2014 @ 01:30:23

    I’m so sorry this is happening to you, Julie. F***ing cancer! F***, f***ing cancer!!! I was thinking about the range of emotions you’ve shared with us on this blog: anger, love, exhaustion, courage, fear, hope, despair, and resolve. It’s a roller-coaster, you say, and I can’t imagine being stuck on one for as long as you have (I got vertigo from just one day at 6 Flags–remember?). I admire your courage. Keep fighting! Keep writing! I will keep praying.

    Reply

  15. katie
    Feb 26, 2014 @ 22:41:06

    Well… what a kick to the crotch! I hate cancer. I hate it more than anything. My boys and I are thinking of you and your family tonight and every night.

    Reply

  16. Kit Grady
    Feb 27, 2014 @ 12:37:53

    prayers coming your way. Stay strong, never give up

    Reply

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