Kaity Kasper


The State of Affairs v.4.

One of the things I really wish for these days is access to a journal of my thoughts, and symptoms, and feelings during my last experience with chemo.  It would be so interesting to compare this current cancer detour with the last one.  But I didn't keep any kind of record back then.  So, for as much as this blog is intended to give you all a peek into life in the wake of cancer, posts like this one are also meant to serve as a log of the more mundane aspects of this journey.

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Round three was the first time they were able to give me an injection of a drug called neulasta.  Neulasta is meant to help keep a patient's white blood cell counts from bottoming out the way mine have been for the last two rounds.  I had this same complication with my Hodgkin's and needed daily injections of a similar drug - neupogen - so we knew this was likely to happen again.  But because I am part of a clinical trial, we had to strictly following the study protocol before adding this drug to my regimen, even with a history of the complication. 

Thanks to the addition of neulasta, I do not have the extreme fatigue I was suffering from during the last two rounds.  I am still super tired, very short of breath, and have a few clotting issues.  These are all likely related to my platelets or hemoglobin counts.   I also had a surprise bout of extreme abdominal pain last night - bad enough to merit a call to the on-call physician.  I was expecting to spend the night in the emergency room, but instead she let me try some ibuprofen and wait it out.  Fortunately it resolved on its own.  I am so grateful.

We are now eleven days post-drain and today is the first day that I have noticed any fluid coming back.  Honestly - it could just be my lack of abdominal muscles right now and poochiness from being able to eat a bit more than normal.  But in my mind, anything short of a concave stomach means that the fluid is returning.  I'm paranoid. 

I do know that from what my nurses have told me that I will probably have to do at least one more drain at some point before this is all over.  But I am glad that things are slowing down substantially - at least it seems like we on the right track.  Hopefully after round four we will be done with this fluid thing once and for all.

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We learn the importance of self care early on in recovery.  But if I'm being completely honest, I've been doing a pretty bad job of self care since my surgery.  When there is no where to go, no one to see, and nothing to do, its kind of hard to motivate yourself to get out of your pajamas [that you've worn for the last four days].  

Between the swelling before surgery, the healing incisions right after surgery, and the ongoing fluid retention, I haven't worn jeans in three months.  Saturday I got a bee in my bonnet and decided that the lack of fluid retention was as good a reason as any to try to get back into jeans.  And when they fit, I decided to throw on heels and paint my nails and add mascara to the few eyelashes that are hanging in there.

It felt good. 

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As we sit here today, the things weighing most heavily on me right now are menopause, depression, and sleep issues.  For some reason, it never occurred to me that losing my ovaries would kick me into menopause.  I was too focused on the cancer, I guess.  But menopause is here and its a bear.  Because ovarian cancer is hormone triggered, I can't be given any hormone based therapies to help.  I am using acupuncture and some supplements to try to manage the symptoms, but nothing is really helping right now.  And hot flashes?  They're just as bad as you've heard.  It bad enough being the bald girl in Target - try being the bald, profusely sweating girl.

My depression ebbs and flows.  There are days where I feel immense joy over where this situation is taking me and how much healing is taking place.  But in the blink of an eye I can move from joy to deep darkness that lasts for days.  Its part of the process I guess.

Sleep is another whole matter.  I have been sleeping on the couch for months now.  I have no idea how to get myself to move back to my bed.  Hope and I spend 99% of our time in the den.  The rest of the house feels much like the rest of the world - a place I once inhabited but no longer belong in.  I have broken the habit of falling asleep with the television on - using guided meditation tracks instead.  Its a start. 

Hot flashes wake me multiple times a night.  I sweat through everything.  The air conditioner is permanently set to arctic in an attempt to help.  I wake so frequently that Hope has developed the habit of moving to lie next to me whenever she realizes I've woken up.  She moves to sleep in front of the door once she thinks I am asleep.  She is a little protector, that one.  

What I wouldn't give for a full night of sleep, though. 

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Tomorrow we do our halfway point CT scan to see where we go from here.  Although Dr. Boardman thought that she removed all the disease during the surgery, it turns out that there is a spot on my liver that my team is concerned about (there is actually a second, smaller spot as well, but due its size they aren't as concerned about that one I guess). 

So, if that spot has stayed the same or is larger, it means this treatment regimen isn't working for me, and I will be removed from the clinical trial.  At that point, we'd go back to square one and figure out a new strategy for treatment.  If its gotten smaller, we will go ahead with the last three rounds of the hard chemo and then move into the year of maintenance chemo. 

While I feel confident that the chemo is working, I am still nervous about this test.  I won't have the results until next Monday, so its going to be a long week.

Prayers welcome.