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?

LET'S TALK ABOUT POOR DISCHARGE PLANNING

LET'S TALK ABOUT POOR DISCHARGE PLANNING

WHERE IS THE ACCOUNTABILITY?

I am wondering who, if any one, knows how to "communicate" when it comes to discharges from a hospital.  It appears to me that no one in the process has any idea of what is supposed to happen.  I was to be 'discharged' at 4: pm yesterday.  The unit nurses had to be ensured that any equipment I needed was at the house.  They were told everything was in place at 4:00 pm.  So, according to my calculations the process should have progressed.  The transport provider was to be called to pick me up.  The discharge paperwork should be filled out and explained to me somewhere around 4:00.  What actually happened is that the nurse came in and told me pick up would be between 5 & 6 pm.  Meanwhile I am dressed and sitting on the edge of the bed waiting.  My next interaction with the unit nurse was that I would be picked up at 8:00 pm.  At this, I was beginning to lose it.  I know it wasn't her fault what was happening to me, what it was her fault because she didn't even try to call another transport service because a 'customer' of her hospital was already waiting 4 hrs. I, in no uncertain terms, told her that she and her peers perpetrate this kind of behavior from transport services.  If they started not calling those who do these things it would hurt their business and perhaps, just perhaps, they would appraise their system of doing business and correct a few things.  But this doesn't happen.  It is like they are held captive.  How many ambulance services does the Pittsburgh area have?  I can assure you that Guardian Angel is not the only one in town. From here it doesn't get any better.  It is now 9:00 pm.  I am told the ambulance in down in the parking lot.  It took them til 9:30 pm to make it to the sixth floor.  In the meantime, in comes the 'charge' nurse with discharge papers to read to me.  I did not want to hear anything she had to say and not so politely told her she should have done this at 4:00 pm when I was officially being discharged.  It is now 5 1/2 hrs. I've been waiting.  Now to the ambulance...the person sitting in the back with me is asking me what I thought were dumb questions like, 'why were you in the hospital? '  She had a handful of papers that she was looking at.  She began to recite meds I was on which were all incorrect.  I asked what she was reading...was it my discharge paper work?  She told me no that they don't get those...she had old paper work somehow.  Only the patient or family get the discharge papers.  What sense does it make for her to not know my updated information?  She would have no idea what to do if something happened to me...There is definitely many bumps in the delivery of this service of 'discharge planners'...It was an awful experience and someone needs to take notice and make a process that works!  I got home at 10:20 pm.  Making that even worse was that I had an admissions nurse waiting for me for six hrs. at my house so that I could be put on hospice.

WHAT NEXT?

What Next?

WHAT NEXT?

The answer to that question is; one never knows.  It only leads to more questions.  What I want to do now is to thank ALL of my friends, family, prayer warriors, those who know me, those who don't for all of the kindness, prayers, light, love that I have received.  You are such wonderful, caring persons.  I am over flowing with love for you.  To catch you up, I was moved from ICU last evening and back to the cancer center floor.  My O2 is backed down to 8L/min.  Meds are being cut back.  I have little pain which is easily gone with a little medication.  I am doing quite well according to me.  I should be going home on Thurs. or Friday.  That is the goal at any rate.  You know how I'm always talking about Universal Energy?  Well, here is more proof...when originally presented with having surgery and removing all of the cells that may be harboring in my abdomen, I thought sure, why not.  As I had more time to ponder this, I began to come up with the seriousness of doing this and what kind of a risk I am.  It may increase the quantity of my life but what about the quality?  On the one hand I have 3-6 mos (?) on the other I have maybe 12-14.  What makes the difference?  This is a question that I could not answer.  It put me in such a conundrum.  I found myself thinking about this more each day.  Then suddenly on last Weds. the Universe took that decision away from me.  I was knocked down with whatever it is I have/had.  Oh, what a relief it is as the commercial goes.  It is quite obvious that I am not strong enough to withstand any kind of surgery and that was one of the criteria to having it.  God works in mysterious ways doesn't he?  When I get home any and all of you can come visit me.  Please keep up the good thoughts, prayers, etc. for me.  I need them now as much as ever.  I will write again soon.  Sending love....Joanie 

HOW DID THIS HAPPEN AND WHY

I had a scheduled appointment

MY NEXT BIG PLAN

I guess this really isn't MY plan.  It came from my oncology team.  I remember way at the beginning of my treatment the Dr. telling me that surgery again could add several months to my life.  We have tried everything to keep from having to do that.  The rounds of chemo (9 mos. worth), taking tamoxifen, then being taken  off tamoxifen, many, many CAT scans, PET scan, needle biopsies under imaging called interventional imaging, chemo given every three weeks, then every week.  Endless Dr. appointments.  My sister and I used to laugh because 'old' people's social calendars were Dr. appointments.  Now we find ourselves in that same circle! That's really funny!  We now belly laugh at ourselves. '"It is what it is", is what we find ourselves saying practically all the time.  In fact, that is what I named one of my blogs!  After much thought and going back and forth, I am going to update anyone who is interested in my medical condition.  If you don't know what is happening or going to happen, you can't pray and send me good vibes.  So here goes.  My oncologist and team thinks that surgery is now necessary.  The OR plan is to remove my uterus, cervix, abdominal lymph nodes, and my omentum (which is where several nodes are).  If the omentum is adhered to the colon then that will require a bowel resection too. I guess this is quite a surgery and will take a long time. One & one half hrs. will be added to the surgery time as the Dr. will drip a chemo into my abdomen.  I vacillate between doing all of this versus not doing it and perhaps dying a lot sooner.  Then, too, I think about whether I will withstand this surgery.  I think that I am strong enough, but that is my thinking.  I have several pre-op tests to be done on the 19th and then see my PCP on the 24th.  I will know more then.  The surgery has been scheduled for April 18th.  Decisions, decisions!  I have several questions still to ask my Dr.  I was too blown away my last visit to think of them.  Some of them are:  1.    what is my survival rate with/without the surgery  2.   what is the recovery period  3.  What will I look like post-op (tubes, vent, ICU,)  4.  Time in hospital (he already told me 7-10 days)  If any of you reading this can think of other questions please write them to me.  Well, this was really hard to write, I guess because I thought it was all a dream or something...I don't know why.

 


 o

My New Plan

MY NEW PLAN

Actually, it is not my plan.  It is my oncologist's.