Surgery and Recovery

It’s been 2.5 weeks since my surgery.  I’m sorry for not having posted anything sooner, but today is the first day in which I’ve felt able to sit at a desk in front of my computer for a significant period of time (which is usually what I need to write anything thoughtful or meaningful).  Until today, I’ve only posted a couple of quick status updates on Facebook to let people in the FB world know the latest.  Everyone else has been in the dark, wondering and possibly dreading the worst.  Thank you to all those who have sent me messages of concern.

The surgery was a big success.  I knew it must have gone at least decently when I awoke in recovery and was told it was 4:45 — what time is it was the first question I asked a nurse as I waited for Josh and my sister to come see me.  The surgery, although scheduled for 11, hadn’t actually started until after noon so the fact that it hadn’t taken very long told me that Dr. D.L. hadn’t had to cut much.  I saw Dr. D.L. before the surgery in his spiffy suit, before they started knocking me up with drugs and before they put an epidural in my back to deal with post-surgical pain management.  I told him to go in there and get all the little mother fuckers.  Today, I told him, is not the day I’m going to die.  I know — a little dramatic but when another human being is going to open you up to see what cancer you have inside you and cut whatever tumors he can out and when you’re about to have your abdominal cavity bathed in a toxic 106-degree cancer-killing drug, I think you’re entitled to a little drama and at least two grand speeches.  So I had my dramatic moment and made a grand speech or two and then I felt better and allowed the powers-that-be to take control of the situation.

As Dr. D.L. would tell Josh near the end of the surgery and me personally the next day, Dr. D.L. did find cancer on the peritoneum, five or six spots ranging in size from a sesame seed to a pea; two of the spots were on the peritoneum overlying my bladder (the same spot as the original metastasis) and the remainder were scattered to the left and right.  He removed the omentum, which is a piece of fatty tissue attached to the peritoneum that cancer loves to grow in and which no one needs (although my omentum was completely free of cancer growth).  He also removed the lymph node that had lit up in my scans of several months ago and a couple other lymph nodes that were potentially problematic.  Dr. D.L. told Josh he was 100% confident that he had removed all visible signs of cancer.  That’s quite a bold statement.  Before the surgery, I’d asked him how small of a tumor he would be able to see.  In response, he made a pinprick mark on a piece of paper with a pencil, and said, “that small.”  Impressive, indeed.  Everything else was clean — my liver, kidneys, ovaries, my retro-peritoneum.  My husband, being the tremendously brilliant nerd that he is, asked Dr. D.L. if he had achieved a CC0 cytoreduction, meaning whether he’d removed all cancer — CC0, CC1, CC2, etc. is a metric by which surgeons denote how much cancer was left behind.  Yes, he was able to achieve CC0, he told Josh.  As Dr. D.L. was walking away from Josh, Josh ran after him to ask one last question.  “What was her PCI?”  PCI is peritoneal cancer index, a number ranging from 0 to 38 that stands for the amount of cancer found at the beginning of the surgery; the lower the number particularly if it is below 7 to 10 depending on the study, the greater the likelihood of the success of HIPEC.  Dr. D.L., without batting an eye, told Josh that while he hadn’t sat down to calculate exactly my PCI, he estimated that it was 5 and that the final number would not be materially different.  How many spouses do you think this world class HIPEC surgeon encounters who knows enough to ask him about CC and PCI numbers?  I didn’t even know what the CC number was until Josh told me about this conversation.  I so love having such a brilliant man as my life partner.

When Dr. D.L. told Josh the news, he wasn’t sure whether it was entirely good news.  As he’ll tell you, you never want to be told that your wife has tumors in her body.  In some respects the best case scenario would have been a completely clean peritoneum and then to just have the chemo bath.  Now that I’ve had time to reflect, the fact that Dr. D.L. found peritoneal growth was in fact a vindication of my choice to have HIPEC done so quickly.  I know there were many who doubted my decision, who felt it was too sudden, who didn’t understand why I didn’t wait.  Thank you to those you who kept your opinions to yourselves.  And to those of you who didn’t, you should realize that medical decisions are highly personal and deliberative and that you should have kept your opinions to yourselves and you should not have burdened me or Josh with your doubts when you were not sufficiently informed.  I know I made the right decision at the right time.  Now, I have greater confidence in my instincts about my own body, in my own decision-making abilities.  It feels good.

The other piece of valuable information that the surgery yielded was insight into the reliability of my CEA, my tumor marker.  As Dr. D.L. told me, the minimal amount of disease would not have caused most people’s CEAs to go above normal, but my CEA is so sensitive that even that small amount of cancer was enough to raise alarm bells.  Dr. D.L. had in fact expected to find more cancer when he went in as he informed Josh — it’s crazy to think what these doctors keep to themselves.  Anyhow, a reliable CEA is invaluable, especially when one’s area of metastatic spread is relatively impervious to scans.

The pathology report which was released a week after the surgery revealed that only three of the five or six spots that the surgeon removed as potentially cancerous were actually cancer.  Furthermore, all lymph nodes, including the one that had lit up on the scans months ago, were negative for cancer.  Dr. D.L. and Dr. A.C., my oncologist, had disagreed about that lymph node.  Dr. D.L. never thought it was cancer because in his experience spread to that particular lymph node was just not consistent with this type of disease.  In truth, Dr. D.L.’s instincts have been spot-on throughout this.  He will certainly be a critical part of my medical team going forward.  So the pathology report provided even better news than we had expected.

When Dr. D.C., my colorectal surgeon performed my colon resection and removed the one metastatic growth to my peritoneum, he was confident that he had removed all visible signs of cancer.  With these most recent surgical findings, I’m left wondering whether these three peritoneal tumors grew while I was on chemo.  I asked Dr. D.L. this.  He’s not certain that I was in fact clean after the first surgery.  In his experience he doesn’t believe there’s ever just one peritoneal met.  There was a lot going on at the time of my resection — perforating colon, huge tumor, inflammation — and so it’s possible that other peritoneal mets were missed.  Visibility may also have been hindered by the fact that the resection was performed laparoscopically.  I’ll probably never know the answer to this question.  What is clear is that intravenous chemo is not as effective at attacking cancer on the peritoneum.  Hopefully, HIPEC with its direct application of chemo to the peritoneum has done the trick.  I will need to go back on traditional chemo to attack whatever cancer is in my lymphatic system, so that will begin soon enough.  Sigh…

As for my recovery, it’s been slow and painful.  I feel like the experience of my recovery deserves a post of its own because no one ever tells you what to expect with recovery.  So I will write more about it at a later time.  I was not prepared for how hard it’s been, largely because my recovery from my colon resection last summer was by comparison a walk in the park.  The physical pain and the resulting emotional and mental drain have prevented me from re-entering normal life, not to mention writing on this blog; I’ve spent many hours staring at the ceiling and walls contemplating the point of human suffering.  Yes, that’s how bad it’s been at times.  Ultimately, the surgery was not performed laparoscopically, which increased the risk of infection.  I did develop a small infection and have a hole in my stomach where the incision hasn’t closed properly.  So I have to pack my own wound twice a day, which is just beyond disgusting.  I had to battle horrible gas pain as my bowels reawakened after the surgery — surgery shocks one’s bowels into a dormant state for several days and the process of them waking is one of the most painful experiences I’ve ever known, that cannot seem to be ameliorated by pain medications.  Pain is still a part of my daily life but it is getting better each day even if I am still bent over like a crone.  But I managed to take Mia to school exactly two weeks after my surgery and have been taking the subway some, although last Wednesday I puked all over the subway platform.  Not a pretty picture.  I’m just grateful I managed to hold it together until I got off the train.  Brought back memories of the night I celebrated my 21st birthday too many years ago, the one and only time I vomited in public.  My mother said I was overdoing things — for once she was probably right.

My back and stomach ache so it’s time to say goodbye to the computer and sitting at my desk for now.  Hopefully, I’ll be writing again very soon, as my physical condition improves.

 

 

 

 

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13 Comments (+add yours?)

  1. Sheri
    Mar 31, 2014 @ 12:57:13

    Wow Julie….. Cancer should be scared of YOU! :). Glad you’re slowly but surely making a good recovery. ❤️

    Reply

  2. barbarablackford
    Mar 31, 2014 @ 13:30:47

    Great news! I hope the recovery speeds up – it sounds awful. My thoughts are with you as you beat down yet another obstacle.

    Reply

  3. April Carty
    Mar 31, 2014 @ 15:22:11

    Very happy to hear the surgery was successful! Sending you positive, healing vibes! Hang in there!

    Reply

  4. Clare
    Mar 31, 2014 @ 19:34:17

    I hate that you have cancer, but damn, you are able to write so well in such a way that speaks to me even though I have had none of these experiences. It’s very human if that makes sense. Rooting for you.

    Reply

  5. Debbie whitmore
    Mar 31, 2014 @ 20:26:51

    It’s so great to hear from you and your medical update. Everything sounds like the best news came out of a bad situation. You can do this Julie. I have high hopes for you, I always tell you! Xxxooo

    Reply

  6. Lisa
    Apr 01, 2014 @ 08:32:23

    Julie, am so glad to hear that the operation went well and that you have a great prognosis. Heaven knows, you are looking fabulous (saw you in FB). Keep on getting better!

    Reply

  7. Kit Grady
    Apr 01, 2014 @ 12:12:28

    So happy to read your post. Sounds like you are moving into a good place.Keep up the fight,

    Reply

  8. Cirincione, Norma F.
    Apr 01, 2014 @ 18:52:13

    Dear Julie,

    Thank you for sharing this most recent chapter in your courageous life. I think of you often and am constantly amazed by your inner strength.

    I send you and Josh my very warmest wishes with affection, NFC

    Reply

  9. The Astonishing FartMan
    Apr 01, 2014 @ 23:10:01

    Great job!

    Regarding your wondering about whether your peritoneal tumors were already present when you had bowel surgery and whether they were growing when you were getting systemic chemo: It’s funny (not ha ha funny) how a person with cancer can really get quite obsessed about the mysterious history of their disease. I certainly was and still am more than a little obsessed about such things, as the rest of this comment will demonstrate. Anyway, somewhat germane: While I was on chemo after bowel surgery and liver surgery for CRC mets in the right lobe of liver, my CEA dropped “below normal.” But then when I got off chemo, my CEA immediately started climbing and then in one month, between my sixth and seventh month post-chemo, it doubled from 6 to 12. Of course, it was a recurrence–a sub-centimeter spot on the left lobe of my liver. And I wondered exactly what you are wondering: 1. What good was the systemic chemo if it let this spot grow? 2. How come my liver surgeon didn’t see the spot growing on the left lobe when he was removing the entire right lobe of my liver?

    Well, maybe the surgeon did see it, but didn’t feel comfortable cutting on a vague little spot here or there after he had already cut out 3/4 of my liver. Or maybe at the time it was just too small to see or definitively categorize in the middle of a surgery that was not planned as a generalized search and destroy mission. But if the lesion on my liver was too small to notice, then why didn’t the systemic chemo kill it? The answer, I think, is that systemic chemo is not really going to kill off anything that’s big enough to be called a tumor. Systemic chemo is really just to kill off microscopic cancer cells that might be floating around here or there. Systemic chemo can retard the growth of CRC tumors or even shrink them, while you’re on it, but systemic chemo is very unlikely to completely destroy even a tumor that is too small to see with the naked eye. Systemic chemo is very unlikely to cure colon cancer. Colon cancer is cured by surgery. Or to state that in the active voice for emphasis, surgery cures colon cancer. That’s why it was good decision for you to do the HIPEC surgery because that’s what can cure you. And HIPEC chemo CAN kill tumors that are too small too be visually identified. So that’s another good reason to do the HIPEC.

    When my recurrence cropped up, I had a second liver surgery (almost exactly a year after my first liver surgery). Needless to say, with a recurrence, my “odds” went way down, but after doing a lot of research, I decided to forego additional systemic chemo. The research indicated to me that, in my situation, surgery was the thing that was going to save me, and systemic chemo after a second liver surgery would not increase my odds enough to be worth exacerbating the chronic neuropathy I had developed from my first blasts of chemo. Long story, short– 1. By comparison with my situation, whereas after my initial diagnosis, I walked around for at least 6 months,probably a whole year, with an undiagnosed liver met, it seems to me that you have “stayed on top” of your disease pretty well. So you’ve definitely got that going for you. 2. You are so right that these are personal decisions, and it’s hard to know what’s right. There’s no way to know what would have happened if you had made a different decision. (Indeed, in my case, if the doctors had known at the beginning that I had spots growing on both lobes of my liver, that would probably have disqualified me for liver surgery. Instead, it would have been “sorry, all we can off you is chemo until death.” So the fact that the doctors initially “missed” the spot on the left lobe of my liver might have saved my life because they performed a right hepatectomy surgery that I was probably not a “good candidate” for. And then a year later when they finally noticed the spot on the other lobe, they did a second surgery. More than two years later, I’m still here, and NED!) So try not to second guess either yourself or your doctors. Just try to learn from the experience and maybe pass on what you’ve learned.

    Now, I must apologize for giving you that little piece of advice, because I know you’re already inundated with every kind of well-meaning advice, some of it downright loony, probably involving herbs you’ve never heard of, crystals, potions, chanting, incense, and sleeping with funny things in your nose or other bodily orifices. One of the little-recognized downsides of cancer is that everyone thinks they are required to give a cancer patient advice for healthy living, while the person with cancer, by virtue of having contracted that disease, is completely disqualified from giving anyone else health advice. It’s a one way street! So when people try to give me advice about my cancer, I say, “Okay, I will take your advice, and drink that funny potion or tea, or do whatever you want me to do, on the condition that if I die you will admit that it was your fault I died because I followed your advice instead of someone else’s.” (I think that’s funny, but when I say that to people, they usually don’t laugh. Hmmm??!!??!!)

    Reply

  10. Poorab
    Apr 05, 2014 @ 02:25:47

    I’m so thrilled the surgery went well. I can barely take our own son to school. You took Mia to school two weeks after a hot bath of mitomycin c?
    Wow.

    I can’t wait to see you this summer. And yes, I can definitely say that josh has passed me in medical knowledge, lapped me, and could teach me a textbook of things I never even knew.

    So maybe josh can teach me about medicine and you can teach me how to write?

    I wish I could tell you I could teach you something 🙂

    Glad you got those little mother fuckers.

    Reply

  11. julie yip 2
    Apr 06, 2014 @ 00:59:30

    Dear Julie,

    I was just randomly typing my name in “Julie Yip” to see what I find on internet and I found your blog. I live in Toronto, Canada and is a General Surgery OR nurse and a mother of 3. Your blog touched me deeply because being that we have the same name…I feel a connection with you. I feel connected with you because we are both mothers who loves our children with all our heart, and as I reading your blog I imagined me being in your shoe and how hard it will be on my family. You are a strong woman with a loving husband and amazing children. I feel connected with you because as a OR nurse we don’t really get to hear the full story of our patient’s experience and journey. Thanks you sharing your blog, and my prayers is with you that you and your family to continue to find strength in our Father for this war. Only He has the power and the knowledge of what is to come, but you have to power to fight and share his love and glory to all those around you. Thousands of miles away, your story have touched me greatly, will be thinking of you.

    XOXO.
    Julie Yip 2

    Reply

  12. Lynn
    Sep 18, 2016 @ 15:05:01

    I’m now facing the same as u and I’m scared as to. W hat will be found. Thanks so much for the details of ur situation it’s helped me a lot get mentally ready sort of. Second time going through cancer diagnosis is difficult. Lynn

    Reply

  13. Holly tyson
    Aug 07, 2017 @ 12:41:14

    THank you file sharing your experience. I am considering this procedure and appreciate your blog .
    Holly@trilion com

    Reply

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