Monday, March 12, 2012

It's Not the Ending But How You Get There That Matters

I am not sure what stage of grief my father is in as he has never been one for talking about his feelings.  I hope that perhaps a grief support group will empower him to share and heal.  We are all worried about him but Dad is a tough person.  He has been through and seen things that would break most men and yet he stands tall and continues to be strong even in the midst of an ugly disease.  Overall he seems to be doing well and comprehends the reality of it all.  His immediate short-term memory is still weak.  Certain things from the past seem to elude him.  He does not immediately recognize faces but many names are still within his grasp.  His recall of circumstances is blurred and details are sketchy.  In fact, you would probably not notice anything was going on with Dad in the first ten minutes of conversation.  Then it sneaks its head around the corner for a quick moment, just long enough for you to wonder what just happened.  As the conversation continues you realize that he has forgotten the earlier part of the talk and many times will repeat the conversation over again as if for the first time.  In the car the other day he asked where his sunglasses were on seven different occasions within the span of about an hour.  He just could not hang on to information; could not remember that he just asked the question and was told the answer.
For me I believe I might be starting the angry phase of the process.  I saw an ad for cancer last night on television and became very upset, spouting off for about ten minutes on how there must be a cure but obviously not enough profit in the cure to make it happen.  I want to talk to mom’s doctors to find out what we learned and how we can get that information in to the hands of other doctors and patients.  I learned a lot and there are things we would do differently.  For example, when the patient complains of acute pain it is not something to easily blow off or simply order and x-ray.  Mom saw a doctor, a nurse practitioner and then her regular oncologist about her back pain and yet it took the oncologist to initiate more tests.  This process took a few weeks and perhaps could have given us more time.  Please bear in mind that I share this as information, not as finger pointing or blaming.  The bottom line is that this cancer is very aggressive and the end result is the same.  But here’s a good argument:  the patient is in pain so you order an x-ray.  If the x-ray comes back clean, you would go the next step and do a bone scan.  If the x-ray comes back questionable, you would still order a bone scan.  The same with the bone scan test except this time you would go to the MRI.  When a patient does not have the luxury of time, would it not have made more sense to go right to the MRI?  It is painfully obvious now that Mom’s back pain was cancer.  Had we immediately performed the MRI we may have been able to give mom a little more time.  But that brings about two questions.  1) how much more time and 2) what type of quality of life.
Mom’s quality of life was pretty amazing until the last month.  She had been having hip and back pain and some headaches.  Her eyesight in her right eye had begun to deteriorate rapidly.  We would discover that the reason for all of these were tumors.  In fact, the tumor behind her right eye was so large and grew so fast that her eye was actually bulging out.  Her last week before going in to hospice was rough.  Monday was surgery to put in a med port and then a PTScan.  Tuesday we found the results of the PTScan showed cancer was everywhere.  Wednesday we had a nine hour chemotherapy day, followed by 3 hours on Thursday and Friday.  Friday night mom fell during the night and was stuck in the living room, half on the floor, halfway on the couch, for up to three hours.  That Saturday mom was not able to get out of bed except to get to the bathroom and had to do that assisted.  At night Mom was having incredible problems walking.  The only way she could move was to put her arms around my neck and allow me to almost carry her.  Her speech began to slur and stutter and she was obviously very frustrated and in pain.  By Sunday afternoon she was in hospice and passed five days later.   To say this happened quickly would be an understatement.  Was there any way to slow this down?
We believe that sometime between Saturday morning and early Sunday morning, Mom had a stroke or a series of small strokes.  Her speech was an obvious give away as was the sudden difficulty in walking.  Her blood tests in the emergency room showed that she was probably en route to a heart attack.  During her time in hospice it is very possible that small strokes continued.  She would talk occasionally for the first two days, fully aware of her surroundings and what was happening.  By day three she could barely talk but was able to use hand motions to a certain extent to let us know what she wanted.  By day four she was in and out of consciousness and day five was spent entirely resting, not communicating except with a slight finger movement here and there.  She passed around 8:00 p.m. on day five.
There will always be questions.  I have been struggling with questions about her treatment and if we actually could have done better.  There are more personal questions that I’m not ready to share yet but that will hopefully be addressed with a counselor.  I recognize the need to talk about these things otherwise I will forever be haunted by these questions and images in my mind.
You will recall that one purpose of this blog is to educate people and to allow people to succeed and live longer with this type of cancer, even though this disease ends in death.  It is not the ending that is important it is how you get there.  Mom got there kicking and biting all the way.  She did not lose her battle with cancer, she won.  She was victorious.  She looked it dead straight in the eyes and never once blinked.   She stood tall and said, “bring it”.  She brought her best game to the table and gave it a beating it had better not soon forget.  We learned much from her fight and now it is our job to make sure that the medical community does not forget.  The valuable information we gained will help the next patient to succeed and eventually we will kick it. 

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