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.