Tuesday, February 7, 2012

Proactive Patient Care

It has been a long couple of weeks since we last posted an update.  Mom has been in a pretty hard battle with pain.  She is experiencing a tremendous amount of pain in her hip and lower back.  Bladder control issues have become a problem.  Walking is labored because of the hip and back pain and she uses mostly the walker right now.  Her eyesight is really bothering her and some of the daytime hallucinations are back again.  She can barely see out of her right eye and her left one is weak and tired from compensating.  The steroid is causing her face to bloat and her appetite is not the best.  These are, indeed, difficult times but ones we trust will get better.

We took an x-ray and it showed a little arthritis in the hip and no dark shadows which would indicate cancer.  After a few days of being on some strong pain medication mom was still not sleeping and still not getting relief from the pain.  We went back to the drawing board and this time did a bone scan.  A possible side effect of steroids (required still to keep brain swelling to a minimum after surgery) is AVN (Avascular necrosis).  This is also known as osteonecrosis, bone death caused my poor blood supply to an area.  The bone scan showed sufficient blood flow to all areas in the hip and back.  We seem to have ruled out AVN.  But the pain she is having is not indicative of early on-set arthritis.  We felt at first that the doctors may have just been trying to blow us off, indicating that it is arthritis and giving her pain medication.  However, many patients do not have a slightly neurotic and over-bearing son to step in when needed!

I spoke with the radiologist and he seemed to agree with me that it is appropriate to do an MRI; two in fact - one specifically for the hip and pelvis area and another one for the lower back.  An MRI will show us the internal organs and will be able to rule out, for the most part, if the cancer has spread to that area.  We are doing that next week.

Mom completed cyber knife radiation on Monday. She is, in a word, exhausted.  In fact, it is difficult right now to see mom so defeated and beat up. She has no energy and her short-term memory issues are enough to cause her frustration.  The patience of those around her are being tried as she continually repeats her self and experiences a certain level of paranoia if we even hint that she is incorrect about her facts.  Sometimes it is avoidable and we let it blow over but other times it is completely unavoidable and those are the harder times.  She has been experiencing personality changes and she does not like them at all.  Her patience level is at an all-time low and her ability to filter what she says has completely gone. 

That being said we know mom is still in there.  I managed to make her laugh a few times and we brought friends over the other day to visit and that really cheered them up a lot.  They like having company and even Dad managed to partake in the conversation. 

Personally I’m dealing with many mixed emotions and am extremely thankful for the many people around me who continue to support me.  I’m at the stage that is common but hard to admit.  I’m resentful of all the time that I spend doing this and that for them and at the same time extremely guilty for feeling resentful.  It is a tough thing to deal with and I’m trying hard to work through them all.  Most people have suggestions but either we have tried them before or many of them are not appropriate for the current situation.

Mom and I still talk about the fight. She still wants to fight.  I told her that we will fight until the day comes when she says, enough is enough.  There is an element of paranoia that perhaps we are hiding something from her.  She asks all the time and I promise her that if anyone mentions it is terminal or suggests that all we can do is ‘make her comfortable’, I will let her know.  I pray that if that time comes, that God has spared enough of her mind so that she can make the right decision.  It is an uneasy position for me to be in to realize that when we signed the Power of Attorney papers about two years ago – that now they are relevant and important documents to have active.  I don’t like being the POA but I do it because I know what both my parents want.

One of the things I try to encourage people to do who may be experiencing a similar journey is to get all the affairs in order while you are still in a positive, healthy mind frame.  If you are the POA make sure you understand all of it and make sure the health care providers have the documents handy.  After two years of speaking and signing for my mother, I still get questioned at the hospital and on the phone.  But you have to put your foot down and remind them that you call the shots – you make the decision – you are in control.  Make sure you tell the providers that you want to work as a team with them and when you feel like they aren’t – tell them.

Mom was looked at a week ago about her pain and a provider elected not to even do a physical examination.  The schedulers tried to get us to go back to her and I said absolutely not.  I told them she had her opportunity to join our team but now the only person we will see is the primary oncologist.  It’s tough – I’m sure she didn’t mean to blow us off – she just wasn’t aware that if I tell someone that Mom is in severe pain, they need to believe me and listen to me.  You have to be pro-active.  I don’t take mom’s blood pressure, oxygen levels, blood sugar, breathing rates, weight, and track her eating and bowel habits because I’m bored. I track them for the same reason they would – to notice any changes quickly.  This is an aggressive cancer with a mind of its own.  The only way we are going to get a step ahead of it is to listen, pay attention, and think outside the exam room.

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