THE UPS AND THE DOWNS

 THE UPS AND THE DOWNS

Being diagnosed with cancer begins the roller coaster ride.  As the days go by one wonders what each day is bringing with it.  I think that the best barometer for me is the pain.  When it is bearable that is a good day. As the pains increase so do the "I'm going to die soon" thoughts.  No two days are the same.  As each day ends and another begins I know that I am one day closer to dying.  At this time, I get a little panicky to get things done and make sure that I've tied up all of the loose ends.  But being the almost perfect procrastinator that I am, this does not happen.  And the longer that this doesn't happen, the harder it is to even begin getting to that 'to do' list.  I thank God for Jeana, my beautiful volunteer.  She has helped me with a project that I've put off for ever so long.  She now has me on a roll!  I have some lovely spring flowers planted thanks to her also.  My family (including my son in Alaska via conference call) and Gateway Hospice staff (RN, Soc. Wkr, Chaplain) had a Family Care Plan meeting last week.  It was very good and productive.  It cleared a lot of things up such as what Ryan & Lauren are going to do re living arrangements...what are their options.  Options are limited due to the fact that we have two precious cats and a beautiful, loving dog.  How are my meds going to get handled and by who.  My sleeping pattern is not a pattern at all so my q 12 hr med at a certain time was not working out.  So it is now being given to me by Ryan or Lauren.  They are also giving me a pain med around 5 am so that I don't wake up later in excruciating pain.  They have both just stepped right up to the plate as I needed them to.  Lauren is my little organizer and has taken over the logging, ordering, etc. of  the medications which includes asking me if I've taken them and when.  Lauren gives me the 5 am med if Ryan is not home.  He sometimes works the overnight shift.  The need for 24/hr. care has been taken care if necessary.  My daughter, Jeanne, is coming up from Florida for the duration. So everything is cleared up re any of those concerns. Since that meeting, it seems to me that the whole atmosphere here has changed.  I can't explain it. This is now Ryan's house and he is accepting all of those challenges and states that he is actually enjoying the responsibility.  God Bless him.  I am very comfortable taking a back seat. Ryan did everything before but somehow this is different with nothing being different. That doesn't make any sense but it is what it is.  I am so very blessed to have the family that I do and the friends that I do.  I am so grateful to have had this time to see things as they are and not as an illusion. The hundreds of friends that I have on the internet are an inspiration to me.

IT' S ABOUT TIME

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IT'S ABOUT TIME 

Yes, it's been awhile.  So much has been happening it is difficult to keep track of it all.  Last Saturday, the Post-Gazette writer & videographer who have been following me on my journey, met with me & many of my family in order to see how everyone was handling my eventual demise and what our interactions were like.  What was everyone 'feeling'.  My family is well aware of how I am feeling as I have been very open and truthful with all.  It was important for me to make sure that I was meeting each individual where they were on this trajectory and not be pushing them to a place where they cannot internalize or comprehend.  This is how hospice staff must interact with their patients & families.  Meeting others where they are is rewarding as it serves in the motivation to move on. Being a clinician and a patient sometimes feels like a double whammy.  While I want to be the helper I also want to be helped.  One important lesson that I've learned is how to 'turn things over' to others and to live with my dependence on them.  I have always been one of those who could do everything myself and not rely on anyone else. That was a hard lesson for me to learn, but I've become quite comfortable doing so. As this disease has been progressing I feel more & more each day that I have many things to get done yet and the longer I procrastinate, the more stress I feel about not doing them.  My time is limited therefore the more anxious I become.  I am being ruled by my physical condition each minute of every day.  The pain does not go away even with an increase in the dosage or the addition of another pain med.  I have had many friends visit me and that adds relief to my discomfort.  It is a joy to see & talk with others where no subject is taboo.  I think this helps all of us.  One of my co-workers, Marie, took me out to North Park by the lake.  We packed a picnic lunch and just sat at the lake edge, ate, & watched the geese go through their rituals.  We stayed there for hours.  It was so peaceful and serene.  The weather was gorgeous, the sky was azure blue with beautiful white fluffy clouds floating by.  The female goose was sitting on her eggs and the male standing beside her was hissing at us.  She was well protected. I wonder where their babies are from last year.  This brings to mind how awesome the life cycle is.  We come and we go...God's plan is purposeful.  And his plan for me?  I must continue to live in the "now".  Yes, there are times when I get scared.  This fear normally comes upon me when the pain is worse.  It is a reminder.  I wonder if when my friends/family get scared is there a trigger for their fear?  I do not pray for a miracle or a cure, I pray for peace, serenity, and that calmness that tells me all is right with the world.  Sometimes I just want this to be all over.  Then everyone could get on with living their lives.  I wonder too, if everyone else just wants this to be all over too.  I feel like I am holding everyone back.  At this time, I will gather more of my thoughts and get back to you.

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BY REQUEST

Several people have asked that I keep blogging so here I am again.  I have so many thoughts that it seems as though my mind never shuts off.  I do not want to be redundant so if I am please forgive the foible.  Still learning the blessings that continue to come because of having this disease.  I have said many times that I didn't understand why the patient or family looked so relieved when someone from hospice showed up.  That we hospice workers always received more blessings from them than we could possibly give.  Well, lo and behold, yesterday I saw this from the side of the patient.  I woke up in severe pain.  And when I say severe, I mean severe!  I had an ER doctor tell me not too long ago that my pain tolerance was so high that I should be a navy seal!  Again, I digress. I took my pain med and it wasn't helping much.  I took the breakthrough med and still continued to have this awful pain.  It began to subside in two hours!   So much for fast acting, eh?  During this period my absolutely wonderful CNA, Melissa came. My relief was almost audible...I was so happy to see her.  Not that she could do anything more for me it was the joy of having her PRESENT!  And Melissa stayed with me until the pain subsided almost totally.  It never goes away completely but it does get to the point to where I am just a little uncomfortable.  So now I know why they (patients/families) love us so.  How's that commercial go...'oh what a relief it is'...  It is simply our presence.  We don't have to say or do anything...just be PRESENT.  How many times have we read this but never really felt it?  I got to do that.  Hooray for me!  Next time one of you are with a patient not having anything to really 'do' or say, take it from me, your just being there is so comforting.  Thumbs up to all hospice staff.  You are loved by one and all!

SPEECHLESS...(ME?)

I am very sure that many of you cannot believe that I am/was ever speechless!  But I assure you, it is true in this case.  I am continually reminded of what wonderful, compassionate, caring, loving (you get the point) people are in my life.  I have been very weepy this past week which normally is not me at all.  Being overwhelmed by the generosity of the administration and staff at Gateway Hospice, I literally have been left speechless.  I could not find the words to express the joy that just overflowed from within me.  I can say these words here, but I cannot begin to tell you how it 'feels' to be so filled with the presence of God.  It just left me crying with each thought as I tried to process what was happening. All I know is that my love for each of you grows and grows not just by the day, but by the minute!  I want so to hug & kiss everyone who has been sharing this journey with me.  It is like no other.  I hope you all understand that being healed is not the same as being cured.  I am definitely healing.  I am so blessed to have been a part of all of your lives.  You've taken the time to pray for me, to send me lovely words of encouragement, to send me light & love.  For all of these things I thank you.  I have the largest family in the world! Everyone of you is my sister/brother.  But please, don't all show up for dinner at the same time! Well, I guess it's time I get on to what is going on with me physically.  I find now that I am having more pain requiring more medication to keep me somewhat comfortable. The pain is waking me up in the morning but I don't have any during the night.  I am having to take a pain pill every 3-4 hrs. and sometimes a half of one in between.  I still can do pretty much by way of taking care of myself and my personal needs.  I am starting to keep track of how many I use in a day.  That way I can use the daily amount to convert to a long lasting medication more easily and be able to calculate the dosage to start with.  I still have an appetite and eat well.  When I had to give up my going back to Alaska to visit with my friends there, I made a new goal of getting well enough to go back out into the field to see patients.  The way things are going I need to revise my goal again.  Maybe I should think of being a goal setter...does anyone need one?  As my symptoms increase so does my need to get several things done.  I'm half afraid to complete my 'to do' list. Because, as I said before, when your job is finished then you leave this world.  All I know is, that I know nothing!