Tuesday, January 14, 2014


Well no one really liked my idea to go in and take care of the clot.  Something about risks of bleeding.  For some reason DVTs in the upper extremity have a very low risk of running away to your lungs and killing you (sorry to worry some of you).  The doctor said normally the swelling will go away, as your body reroutes the blood or the clot dissolves, but it may take 6 weeks to see any change.  I really think this swelling could be chronic for me, and I might have matching compression sleeve arms.  It has been pretty upsetting to see another limb grow.

The worst part of this is is that the clot was totally preventable.  I refused the lovenox (blood thinner) shots while I was in the hospital.  They give them to every patient in the cancer hospital (cancer puts you in a hyper-coagulated state).   I didn't want to be poked and I wasn't really a cancer patient because I got up and walked a mile or went to the bathroom every 20 minutes, so I wasn't going to get a clot in my leg.  I wasn't thinking about a clot because of the line.  I am trying so hard not to beat myself up about it, but guilt is almost the worst feeling of them all.  It is very overwhelming and I am trying to learn to let it go. 

On top of this I have had a pain in my right (other side) forearm for the last few days.  Yesterday it was Sam's birthday and I went to get doughnuts for his class, and literally thought about asking for some help because I couldn't seem to twist my arm in and out of the case and bring them back to the box.  I cannot open a jar.  It is swollen.  I would suspect some sort of arthritis with all these immune medications, but I'm on high dose steroids so that wouldn't make sense yet.  At first I was sure it was a tumor, and then I worried a blot clot.  The doctor looked with an ultrasound today and said it is unlikely tumor (thank goodness!), but wants to do an MRI tomorrow to see what exactly we are dealing with.

Next week we peek at the kidney tumor to see if it growing.  I really, really want to keep my kidney and this will be pretty telling.  I will never get IPI again, so this is it's chance.  I am trying not to get unrealistic.  But expectations are high.

This all adds up to a breakdown for the strong Alisa.  Yesterday I called for an anti-anxiety prescription to help me sleep.  It worked it's magic.  This morning I woke up and it all seemed better.  The sun was out and my sisters had cleaned my house and Josh was working from home.  It is all going to be okay.

I feel like I've been in my own little world that doesn't relate to the rest.  As I typed here all this medical news I especially feel this isolation.  What I think about is not what people think about.  What I worry about is not what people worry about.  But what I feel is the same as others.  Bursts of guilt, fear, lose, hope, worry and joy.  Miraculously, two years after a devastating diagnosis I still cry like the rest of you.  I still sigh and panic and laugh.

My own little world is very much a part of a bigger one.  Tears are the proof.


  1. I'm always amazed at how you can pull it all together & write like this. You are awesome!

  2. I'm so glad you called in the troops to help you get some peaceful sleep. That's no breakdown! I can't believe you've gone this long without "breaking down." I wouldn't last a day. Love you Alisa! We pray every day for you and your family.

  3. 2 years is pretty dang amazing with a lot more in you too...the fight is still going strong! Lots of love and prayers always!!

  4. As always, well written...and very courageous.