Friday, February 5, 2010

Two Week Anniversary

I announced the big news elsewhere first and I'm sorry I ran out of steam and didn't put it here!

I had my surgery for uterine cancer two weeks ago.  I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch.  It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it.  This was a relief and means I am stage 1a, although grade 2.  Stage 1a is the best :)  The cancer was caught early and the surgery should be curative!!!

So I'll be around to continue to write meaningless drivel in blogs ;)

Back to the subject of this one:  I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town.  I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint.  I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.

Don and my mom have been doing so much so that I can get better.

My mom works all day to cook and clean and do laundry.  This is a gift from heaven.  One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't.  Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now.  As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know  in the tech world.

But I am trying to enforce rest periods on mom.  Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake.  I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time...  I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.

And now Mom's expected to be a nurse!  Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.

When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out.  And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures.  He's been my uncredentialed doctor here at home and has truly helped keep me alive.  I think he's ready to do surgery now ;)

The wound being infected means I'll have a longer recovery period than previously estimated.  But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.

I am so glad the cancer is out.  There are so many reasons I don't want to leave the world right now.  I am so grateful I have a good chance to stay.  I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.

I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed.  I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live.  I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !



  1. Thanks for writing all this, Pam! I have felt really out of the loop and don't know how to help you! But it looks like you've had lots of support which is great. I'm so glad your mom and Don have been there for you, as well as the nurses!! Hang in there and call on me anytime! If I can get up to see you, I will do so.

  2. Oh man...I got total flashbacks from my experience with my gallbladder surgery 20 years ago. Thank GODDESS Richie was there to care for my wound...I actually "rejected" my staples and they took it out early. He was so awesome...(sigh)


About Me

My photo
I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...