Roller Coaster

The dark days that stand out in your life, the twisted, gut wrenching kick in the teeth days are the most vivid.  The nice days and good memories seem to always be overshadowed by the shit stain days.  Maybe I have something wrong with my brain because I remember these fucking days and struggle to remember some of the simplest memories at times.  I remember vividly the days each of my Grandparents died.  I won't get into the deep darkness of my kids.

I have had almost 3 weeks of those dark days now.  My last blog was sort of the introduction to that.  Since I wrote that blog, I can only tell you what I have dealt with which is minuscule compared to what my mother has gone through.

The normal waiting for test results.  Test results that never seem to come.  The feeling that you are not a priority for Doctors who are busy.  When they come to discuss results and situations and outcomes and unknowns they seem to be in a hurry to move on to the next person.

The roller coaster that is this kick in the teeth is one with deep terrifying drops and tiny little peaks.

We have gone from a cancer diagnosis, to a release to my sister's home with consults scheduled to plan treatment, to a back slide and another near death trip to an emergency room and back to the larger hospital where the nurses say, why are you back here?  Oh No!  Not your mother again!  When we finally get the PET scan results they show the cancer has not spread beyond the tumor in her lung, but the latest incident has left her so weak that treatment might kill her.  Hospital one says she has an infection and even though hospital two is giving her highly potent antibiotics, they are not sure.  The Oncologist, who is an abrupt fast talking, arrogant (to me) sort of fellow talks about functional reserve and hospice care which causes my mother to comment that she may not go home.  I take him to the hall and berate him for his callousness, lateness and lack of bedside manner.  "You were supposed to have PET scan results to us on Friday or possibly Monday Morning at the latest.  You were supposed to see us on Monday in person and did not show up until Tuesday Morning and then you say something that diminishes hope."  I want to be told the truth, and so does my mother, but there are ways to do it and even an old asshole such as myself understands that.

After that conversation, I sit and watch my mother in her hospital bed, chest tube draining, oxygen hissing, heart and pulseox monitor blipping and have it in my head that she is dying. My thoughts are racing to hospice care at home, getting a hospital bed, figuring out how we are all going to make it happen so she can be home, and if not her own home then my home.  The darkness of all these thoughts is overwhelming and I am unable to sleep.

I return to the hospital from my hotel room in the early morning and my mother has had a horrible night.  Coughing fits, pain, no sleep and she is miserable.  When she has just been asleep for about 45 minutes, the nurses come in to move her from the ICU to a regular room.  "can't you wait?  She has just fallen asleep."  Unfortunately the answer is no and she is awakened and move to another room.

Shortly after we get to the new room, the Oncologist returns and this time is a bit more personable.  He sits down and says that there is an indication of infection and that it looks like her white blood cell count is coming down.  An indication of infection, believe it or not, is good news, because it is something that can be treated.  Loss of functional reserve cannot.  We are on a tentative uphill clime again, but the dark pit is just ahead and we don't realize it.

My mother never complains.  Everything is fine.  I am sorry for worrying you.  Is your father ok.  But she is uncomfortable and coughing and miserable and the doctor prescribes a bit of pain medication to help her even though she says she is ok,   The chest tube is painful in spite of her denials and she needs to sleep.  My sister and niece arrive and mom is very sleepy and finally drifts off while we are sitting here.  She wakes up a couple of times and groggily asks for a bit of water, which I give her.  Finally she is sound asleep.  After a couple hours my sister leaves.  The nurses have been checking on her and are glad she is sleeping.  I tell the nurse I am going to go to my truck to get my phone charger because it is about dead, and make a couple phone calls and that I should be gone no more than 30-45 minutes.  I am walking back to the room 20 minutes later and there is a commotion going on.  My mother's room has about 15 people in it and I am told to wait in the hall.  They cannot get her to wake up.  She has had a bad reaction to the slow release pain reliever and they are using Narcan to wake her up.  Now she is awake but in a fog and has obviously taken a major step backward.

She still manages to mumble out "I'm sorry Rob."  "Sorry?  What are you sorry for?"  "For being such a pain."

She is not a pain.  Has never been a pain. And never will be a pain.  I have pictures of 100 cotton diapers hanging on the line that are proof positive she can never be as big a pain as I was.

Watching her sleep tonight...a regular sleep...I wonder how far back this event has set her and will we ever be able to crawl our way out of these dark days and back into the light.  I fear we will never see the sun again.


A Footnote, because I cannot write another chapter of this darkness. 5/14

My mom passed away the night before last.  I was there and held her hand as she passed.  Except for a brief few hours of sleep, either I or my sister were there with her for the last few weeks.  My brother was there too as much as he could be.  I have a huge hole in my heart right now and one of guilt that I should have recognized signs and forced her to the doctor sooner.  She would be horrified that I feel guilty, but still I do.  It will be a long trudge back to the light as my kids, who were nothing but an embarrassment and source of heartbreak to her now use her memory as a tool on facebook to gain sympathy.  My son had not talked to her in 6 years and my daughter in 3.  It is like a final stab for me and i realize that I have to be truly done with them rather than hold out hope that they will somehow come around to reality.

She was so worried about being a burden on us, so concerned about everyone but herself, so quiet when I talked about how I would set up the hospital bed in our house and how we would handle her care and how it was not a big deal for us to care for her....I am convinced she willed herself to pass...one last selfless act so that we did not have to be bothered.  She would have been no bother.  I am going to be lost for a while.

I will miss her walking into the house with a big smile and saying "Hi Bud!"  I will miss the meaningless conversations about daily happenings, her questions about my job and who was coming and going from our little town.  I will miss the simple day to day interaction.

She was so much like my Grandpa (who I am named for).  Cheerful, joking.  Right to the end.  The Doctors we talked to at the end cried, her nurses cried and we cried.

They say that time heals all wounds and I am not sure that it is really anything other than scabbing over rather than healing.  It is frustrating that the rest of the world does not stop when yours seems to.  Life will go on, but it will be lesser for her absence.