IS THIS THE BEGINNING

IS THIS THE BEGINNING OF THE END OR THE END OF THE BEGINNING?

As a clinician, I know that as the time for living grows shorter and shorter the patient begins to not take much of the environment in.  As a patient, I can attest to this.  I find myself less and less involved with what is going on around me.  WOW, I never do stop learning do I!  I am now understanding what all I learned from the text books. This disinterest is somewhat disconcerting.  I feel like I am half in and half out. I am left wondering when I will be all of something. The TV shows that I faithfully watched I find I don't care if I see them or not. This is really the time that I must take one step at a time.  There is no setting up a schedule, hurrying, or delaying anything. I have become blase'.  I must just live in the now and be satisfied with that alone.  I'm seeing the process of slowing down wondering when I will see the stand still. Meanwhile, I am chugging along at the speed my body wants me to go.  I just had a phone call from a young priest I knew in Alaska.  He told me that he is trying to get enough frequent flyer miles together to get my son here. Those prayer chains stretch over the world!  If I were to take the time to individually pray back I would have to live as long as Methuselah!  I don't mind the age so much as I mind the hairstyle! Not near as easy as ours, huh Marcie? For now, know that I love you all as much as anyone could love another.

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!

AND THE SAGA CONTINUES

Jeanne is so much like her mother.  She did just what I would have done if positions were reversed.  She did not wake me up this morning as I had asked so I could hug & kiss her before she left.  It was very early but still...she has a trillion justifications for doing that but still...It is now Sunday afternoon.  I miss Jay & Jeanne.  So much of me is in them.  It is almost eerie.  The child  I am concerned for is my youngest, Judy.  Judy also lives in Florida.  She does call & text me, however, she is making no effort to come to Pittsburgh to see me before she can no longer see me.  I know what she is doing...she is hiding from the fact that her Mom is not going to live forever as she thinks in her fairy-tale world.  It's like the little toddler who hides his eyes and says, 'you can't see me'!  I have been telling her that I am ok right now and that we could have some good quality time together.  If only...She needs a lot of help emotionally now.  I will ask my social workers to give her a call to see if they can help her.  Obviously, I have not done a good job of it.  She did the same thing when her Daddy was dying and has suffered severe guilt since then.  I don't want that compounded by my death.  It is a pain that she is familiar with though and sometimes people prefer that to the unknown pain.  We all handle things in our own, individual, unique way.  In fact, who am I to say that her way is not good?  It is her way.  But, as with all of our choices, there are consequences to those.  As a mother, of course I think I know best!  I have this crazy craving to begin putting post it notes on things with names of those whom I want to have them.  Perhaps, I'll just make a list...that wouldn't look as tacky!  I can't begin to explain what just happened as I was finishing this writing!  The Universe wasted no time in telling me that I have no idea what I'm talking about.  Little Judy (we call her that cause my sister's name is Judy too) called me and asked if she should come now or wait til her surgery is over on April 12th.  I was blown away not only by the question but by the swiftness of the action that I had just said wouldn't happen.  Dear Lord, do we ever know what we think we know?

BITTER/SWEET

BITTER/SWEET

WOW !  Where to even begin...The past two weeks have been a whirlwind of emotion.  I am home from the hospital one week today.  I had been admitted for pain management last Weds.  I remember very little of what took place except for a few snippets of info.  I remember having that helmet on that is called a bi-pap.  I am totally disoriented without my glasses and with that on you can't wear them, you can't talk so that anyone can understand you and you can't hear what anyone is saying to you.  Not very pleasant to say the least.  But, as I said, I don't remember much more of that experience.  Apparently, I had some difficulty breathing and was transferred to the ICU.  My POA is my son in Alaska.  He was called around 4:00 am & was told that I wasn't doing well and they were going to vent me.  My son hadn't even know yet that I was in the hospital.  I can only imagine what his mind went through.  He called his sister in Florida (she knew nothing either) and they both made plans to get to Pittsburgh as quickly as possible.  Jay's first flight was cancelled adding to his consternation.  He did finally arrive, a bundle of nerves.  Jeanne got here next, also a nervous wreck. Jeanne couldn't get out of Florida quickly due to spring break.  Then she got stuck in Phila. for several hours (I don't remember why).  I continued to improve in the hospital and was once again sent to the cancer center floor.  I was visited every day by a Dr. John Pazin who was covering for my regular PCP.  That, I am sure, was designed by the Universe.  Never in all of my years as a nurse and the last fifteen as a hospice nurse have I ever met an M.D. who could actually sit down and spend time talking with a patient who is expected to die about death & dying.  He was so on with his ability to converse about this and to do so comfortably.  He gets hospice!  I couldn't have been happier.  Each day he came in, sat down, never appearing hurried, talked with my son at length as well as me.  This man was definitely put on my path by the universe's energy.  He explained each day what the plan of care was as of that moment to me and my family.  I am so very impressed with this open, honest, caring man.    Well, by the time I was discharged I had been in the hospital for 9 days.  I came home and was admitted to Gateway Hospice.  All of the services that I have been given have been extraordinarily wonderful.  My daughter cooked dinner on Sunday night for my sister, son, herself & me.  Jay was leaving in the morning to go back to Alaska.  When it was time to say good bye, I could hardly utter any words.  I wanted to tell Jay about all of the wonderful memories he has given me and how very proud of him that I am.  I couldn't begin to get it together. My heart was breaking as I was thinking that this will be the last time that he sees me alive.  My mind told me he was thinking the same and I was hurting so badly for him.  It was so emotionally charged with sadness & tears, that I thought I would become a puddle on the floor.  My son had to leave and go sit in the car.  I knew what he was doing and felt (if it was even possible) more sadness than I could ever remember having. He loves me so much in spite of the things I did wrong in raising him.  He was always his own spirit and I was always trying to break it.  I will say that I never managed to do this and I couldn't be happier.  He is his own person and I am so proud of the man he is.  He is the best Daddy to his two little babies that God has ever made.  They will be his saving grace when anything happens to me. God is so good! One cannot imagine the joy I have in my heart that we were able to spend this time together (as Carol Burnett would say!).  And now I must face my daughter, Jeanne, leaving for her home in Florida tomorrow morning.  I often wonder how much hurt a person can feel and not fall completely apart.  But I know that this is part of living and we are all on our paths to live, love & learn whatever is in store for us.  I will try to be more stalwart in the morning.  Jeanne is my first born and as such I loved her so much that I couldn't even think that there was more love I could give to another baby.  But guess what...I had two more babies and with each my love just compounded and I found love everywhere with them.  One was as precious as the next...that is God & his infinite wisdom.  I will continue on my journey and they on theirs.  What more could anyone ask of the Almighty?