2 plus years out from OvCa diagnosis…

This is not the blog post I was expecting to write.

I didn’t expect to get a CA125 of 115 on January 31^st..

I didn’t expect to get a CA125 of 304 on February 14^th.

The MRI shows nothing –  except a small renal cyst.  No further information in the report.  This worries me due to some studies DH and I have run across.  It makes me wonder if the mets are hitting my kidney.  Or is just a benign cyst that has nothing to do with anything?

The oncologist didn’t even note that in our consult.  Rather, Dr. Professor presented me with all the information about how asymptomatic patients don’t really benefit from chemo any more than those who wait for symptoms to present.  We are talking about the cancer that whispers.  What is symptomatic?  Upset stomach? Twinges of pain?  Weight gain? Weight loss? Frequent urination?  How can you know for certain you are asymptomatic?

Honestly, I think he was firing me as a patient. Something I don’t think DH caught on to. I think this is an area that is too far out of his expertise. He said as much.  He muttered something about mis-staging at the original surgery.  The thing is, according to a new group of studies every single ovarian cancer ever has been staged incorrectly. They think it really starts in the Fallopian Tubes somehow.  I’m not clear on the how. 

Of course, I’m allergic to all those corn-based things used in PET scans.  This is the scan that can see microscopic disease.

I have an appointment with the Nurse Practitioner at the Gyn/Onc, Dr. Sunshine.  She seemed to agree with our assessment that if CA125 nearly tripled, chemo might be a good idea even if there are no obvious symptoms yet.  (She works hand in glove with Dr. Sunshine.)

In the back of my mind I keep hearing the statement that Dr. Sunshine said about the tumor he found during surgery: “Fastest growing in 25 years of practice…”  In a matter of 3 months I had no cysts to a cancerous cyst. In a matter of a little over a week I had ascites.  Do I really want to wait for obvious symptoms?

Early symptoms are so very subtle, so easily mistaken for just the part of life.

No, this isn’t what I was anticipating thinking about now.  It wasn’t what I thought I would be blogging about in this year.

Now, I am writing about NED leaving the dance floor.

I know I have been a horrible blogger of late.  I was trying to get back in the habit with my card making when I was called in to take care of my Great Aunt’s estate issues as she is suffering from health issues which include mild dementia.

On the plus side, I got to go to Florida.

On the not so plus side, it was in July.

It is now August.  I am now back in Michigan working on getting things put together so that my Great Aunt can have as fulfilling a life as possible with the time she has left. 

Though, I object to it, she has decided to remain in her home with one crazy neighbor on one side to her home.  This man is just not right.  Let’s mix prescription mood-altering drugs with alcohol and see what happens seems to be his motto from the stories I have heard.  Luckily, she also has some wonderful neighbors who are looking out for her well-being.

What did I want?  I wanted her to move into an Assisted Living Facility that was akin to a Palace.  For one fee, she would have had 3 squares in a fancy dining area, on-site medical staff, her own apartment where she could keep her cat, and a variety of amenities that are too long to list.  Shoot, I would have moved in!

The stumbling block was her stuff.  Now, we all have attachments to stuff, but, one of the things that most folks don’t realize is that those with mild dementia sometimes use their stuff as memories.  The stuff is important to them because they know that it represents something important –  even if they don’t remember exactly what it is.

Now, some relatives have the stamina and strength of will to do what is necessary even if the person wants none of it.  Some don’t.  And, then there are the ones who don’t want to make waves –  or even upset anyone.  Someone is always going to be upset.  Someone is always going to not like your decisions.  Someone is always going to find fault.  It is just the way of things.  And, sometimes, the relative who won’t cooperate –  or convinces the swing vote against a decision –  turns around and says that “we should have done that.”

Well, yes, we should have.  We didn’t.  Why didn’t we?  You didn’t want to do what the experts told us to do.  But, well, that’s in the past.

So, now, I’m in the midst of trying to take care of all of this.  Set up my Great Aunt’s accounts and bills, and generally try to figure out how to make the money she does have last her when she is not doing what is most conducive to making it last.

Now, if people would just do what I tell them to begin with, things would work out better.  Honestly.  OK, I know that sounds conceited, but in this case I’m going from years of observation and knowledge of what really does work vs. what only ends up making it more difficult.  Not to mention that I have hooks into professionals who have dealt with this sort of thing over and over again.

I’m just waiting until we will have to take her to a home kicking and screaming instead of the way I originally wanted –  through just a little bit of deception.  (And, yes, deception is ok when doing what is best for someone who is mentally incapacitated.  We don’t mind using a bit of it on toddlers, and well, mild dementia that is progressing means the person is no longer able to make long-term decisions in their own best interests.)