Please Don’t Forget Us

I apologize for the long silence.  I’m sure many of you have been wondering why.  Some of you, particularly those of you not connected to me on Facebook or not part of my online support group, may have even been worried.  Thank you for the concern.  The short version of the explanation is that the last few weeks have been filled with a combination of bad and good things – some undiagnosed pain accompanied by a rising CEA, precious time with my brother who visited from Los Angeles over Martin Luther King weekend, followed by a horrible cold that has left me pretty incapacitated and seemingly unable to take chemo for now.  But the long version of the story is more involved and complicated. 

At my last infusion three weeks ago, I complained to my oncologist about persistent crampiness (like I was about to get, or in the early stages of, my period – not that he would know what that feels like).  He sent me to a gynecological oncologist immediately.  After all, my last CT scan showed an enlarged right ovary which was of unclear significance.  CT scans are not good at diagnosing ovarian mets however; vaginal ultrasounds are.  Within a couple days, I was talking to the gynecological oncologist about ovarian and uterine mets and the possibility of surgery in combination with HIPEC #2 – you see, I’d already thought through all the worst scenarios.  By luck or maybe because someone felt really sorry for me, the oncologist was able to get me in for an ultrasound that day.  The procedure was rather uncomfortable.  As I watched the undecipherable images on the screen with the occasional flashing colors, I was sure that, given my discomfort, I had ovarian mets.  The ultrasound technicians are trained not to divulge any information, although they understand the images; in fact, they write the reports which are reviewed  by the radiologists.  So patients are tortured with the waiting until their doctors call to share the results.  After it was over, I asked my technician in a rather pathetic manner, “So you can’t tell me the results, can you?”  She was a very sweet lady.  “It looks fine.”  Another person taking pity on me.  She left the room to confer with the radiologist and came back to confirm everything looked fine.  Yes, my right ovary was slightly enlarged, but it wasn’t because of metastatic disease.  I hugged the technician and went on my way.  The pain abated over the next few days.  I still don’t know what that was about.  I suppose the oral chemo pills, the Xeloda, could have been a contributing factor.

I went in for my triweekly infusion of Avastin yesterday, which I ended up not receiving.  My heart rate was “tacky”, meaning too fast.  It was 104 resting and 130 with mild exertion.  I’d been feeling dizzy and lightheaded all day.  I’d ascribed it to this wicked cold I’ve been suffering from for the last two weeks.  Josh brought it into the house.  It feels like the worst plague ever.  He himself took two days off of work because he was so sick.  I’m still coughing and feeling blah.  Dr. A. C. performed an EKG immediately, which ruled out an arrhythmia.  Then, I had a chest CT, which ruled out a pulmonary embolism and pneumonia.  So, we don’t know why my heart rate was elevated, but we’ve ruled out the most life threatening potential causes.  My oncologist sent me home with instructions to take an antibiotic in case this plague is bacterial and to stop taking the oral chemo pills until Thursday, at which point we will reevaluate.  Chemo isn’t usually withheld due to a cold, so if my heart rate is at a more normal level, we will proceed with the Avastin infusion and restart the Xeloda pills.  Yesterday was horrible.  I of course assumed the worst and imagined I had a clot in my lungs, readying myself to head for the hospital, not allowing them to take the IV out of my arm after my CT scan because I was convinced that I would need it for something else, silently begging the gods to let me live a little longer.

Oh and of course the unexpected CT scan yesterday gave us an early-than-planned opportunity to see how those lovely lung mets are doing in there.  There’s no change.  In cancer parlance, they call this “stable.”  My response to my oncologist when he told me was, “So the chemo isn’t working.”  His reply, “No, it is working because the mets haven’t  grown.”  So, that’s the objective of the game now.  I live in a world now where no change and “stable” is good.  Fucking depressing.

My parents are visiting again so I will have more time to write.  So expect more from me in the coming days and weeks.  I have another blog post I’m working on, something more meaningful and interesting, but I wanted to get this medical update out in case people were starting to forget about us.  I’m asking – begging even – for your continued prayers, thoughts and good vibes.  For Josh.  For me.  For our girls.  Josh and I are struggling so much these days.  We are trying to find what joy that remains but it is nearly impossible.  I find myself crying to anyone who will listen and even to those who might not want to hear it.  It’s awful.

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19 Comments (+add yours?)

  1. Carrie Basas
    Feb 03, 2015 @ 13:22:35

    I’m sorry, Julie. I can’t even imagine. You are in our thoughts.

    Reply

  2. Janie Davis
    Feb 03, 2015 @ 13:28:37

    My thoughts and prayers are with you and your family, Julie.
    I hope you can recover from this cold you have and can gain some strength and
    stamina.

    Reply

  3. Nilene Evans
    Feb 03, 2015 @ 13:37:46

    I am so sorry and do keep all of you in my thoughts and prayers. Thank you for the update.

    Reply

  4. May Steinhardt
    Feb 03, 2015 @ 13:43:40

    Julie – keeping you and your family in my thoughts & prayers. Warm felt hugs my dear🙏

    Reply

  5. Dana Tipton
    Feb 03, 2015 @ 13:49:18

    Cry and talk to everyone. We are not meant to endure alone (I know you haven’t). You are very loved and thought of!

    Reply

  6. Jeanine
    Feb 03, 2015 @ 14:29:03

    Julie, my heart aches for you and your family and I don’t even know you. I Fucking hate cancer!!! Keeping you in my thoughts and prayers. And please don’t ever give up hope. Your mind is half the battle. You are not a statistic. Only God knows what will be. Keep on keeping on with the treatments. Thank you for updating us.

    Reply

  7. Katie Vogler
    Feb 03, 2015 @ 16:24:45

    Julie,

    I am thinking about you and praying for you all the time. Consider taking a short vacation with Josh and the girls when you are feelin gbetter.

    Reply

  8. stacymeschke
    Feb 03, 2015 @ 16:40:47

    Thanks so much for the update. I wish you joy anywhere you can find it.

    Reply

  9. Chris S
    Feb 03, 2015 @ 22:26:04

    Hi Julie,

    Thanks for the update. It does really suck to be ‘normal sick’ on top of ‘cancer sick’. Take care and remember you, Josh, and the kids are never forgotten.

    Chris

    Reply

  10. Nzinga
    Feb 03, 2015 @ 23:03:34

    Julie, you are certainly not forgotten! There are so many of us all over the country (maybe even the world?) rooting for you, sending you love, prayers, and hope. You’ve been in my prayers as well, and I will keep praying for you. Warm wishes to you and your family.

    Reply

  11. poorab
    Feb 04, 2015 @ 02:23:58

    ‘Fucking depressing.’

    At least I know for sure it’s you writing!

    The joy will come back, it has to, in some different form, shape, appearance, but it will.

    Reply

  12. Lisa
    Feb 04, 2015 @ 03:16:01

    Here is someone in Germany thinking of you and your family! There are no words but whatever you have to say, you can be sure that I will be reading it.

    Reply

  13. Heidi
    Feb 04, 2015 @ 07:01:47

    still praying for your family. Keep fighting!
    Please keep my family in your prayers – my husband grew a tumor while on folfox so they have stopped chemo and called in hospice. He is 40.

    Reply

  14. MichelleDM
    Feb 04, 2015 @ 10:34:57

    I came after searching for others who have had HIPEC. There don’t seem to be too many of us! Thinking about you and your family.

    Reply

  15. Eric S.
    Feb 04, 2015 @ 13:50:50

    We are most definitely thinking of you, the girls and Josh.

    Reply

  16. Mirna
    Feb 04, 2015 @ 16:27:55

    Thinking of you andwishing you all the best. You are not forgotten.

    Reply

  17. Maria
    Feb 04, 2015 @ 19:53:19

    I stumbled across your blog several months ago and I was instantly drawn in by your writing. I have since read the whole blog (two or three times) and I have been stalking it since your last post in January. I’m sure you’ve heard this before but I love your writing – so much honesty, anger, love, confusion. Although I’m not affected by this disease, I appreciate being able to see the journey through yours. Best wishes for you, Julie, and your husband and daughters.

    Reply

  18. The Astonishing FartMan
    Feb 04, 2015 @ 23:54:41

    I’m praying for you and your family. I hope you are able to keep finding some joy in life, even among the confusion, sadness, anger, fear, pain, and exhaustion of cancer, which is all wrapped in the frustrating tedious mundanity of constantly waiting around in some waiting room somewhere to be dosed, poked, and scanned. I have faith you will find your equilibrium that will allow you to manage this stuff and still have joy. You can do it.

    For us puny humans, if you see things the way I do, all of life seems to be pretty much a hapless fiasco of a farce. Yet it is, according to my ridiculous poetical beliefs, a fiasco of a farce that is every moment presenting possibilities of love and beauty and goodness that are oftentimes right there in front of us, free for the taking, and even better, free for the giving.

    For us humans, so fragile and finite in this earthly form, it seems there’s nothing ever perfect, neither a perfect life nor a perfect death. Still we should give ourselves good credit, because we deserve good credit, for trying to do the best we can.

    Reply

  19. Candiland
    Feb 14, 2015 @ 11:50:10

    I just found this blog. I am so sorry for what you’re going through. You’ll must be so tired of fighting but you are still so strong. You and your family are in my prayers.

    Reply

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