Thursday, May 1, 2014

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.

Wednesday, April 30, 2014

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.

Wednesday, April 16, 2014

.
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!

Monday, April 7, 2014




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!

Monday, March 31, 2014





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?


Saturday, March 29, 2014

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?

Friday, March 21, 2014

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.

Tuesday, March 18, 2014

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 

Sunday, March 16, 2014

Saturday, March 8, 2014




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



Thursday, March 6, 2014

Saturday, February 15, 2014








LOVE WHAT YOU DO




As the quote from Steve Jobs states, you must love what you do to obtain greatness. I have been contemplating writing about this for awhile and then this came from Steve. I think that is serendipity. So here I go with my thoughts on this subject. I will speak specifically about hospice staff. Others often ask us how we can do this job, that it must be so depressing. Working in hospice is not at all depressing. It is the opposite...it is uplifting. The very 1st thing we see is the relief on the face of the caregiver and the release of tension in their muscle groups as they open the door to us. Blessing number one for us. We then get to see the patient & hear from them how glad they are that we came to visit them. Blessing number two. If the patient can't talk, we see the change in them non-verbally when we are there. I have often said that if you don't really love working in hospice that you will soon 'wash' yourself out. That doesn't mean that you are 'bad'. It simply means that there is another area where you will shine. For me, I have had an on-going love affair working in hospice. Others may think that we are 'hardened' to death & dying. Nothing could be further from the truth. We are such emotional beings. We cry, we pray, we hurt, we grieve, and yet we go on giving of ourselves. We could never do this if we didn't love what we did! When we make a patient more comfortable, teach the caregiver something new or perhaps only iterate what we've already taught (with all of the stress on the caregiver it is easy to understand that they sometimes can't retain what we've previously said). We hospice workers are pros at practicing patience without ever having an attitude. Seeing the patient clean, safe, and having less symptoms is another blessing. Having a cup of tea with the caregiver and allowing him/her to express what they are feeling as we help them work thru these feelings is another blessing. The relationships that we build is awesome. Another blessing. As you may be beginning to see, we receive many more blessings than we think that we have given. My being a terminally ill patient now and relying on my many hospice friends as an important part of me having a support system, I can readily see the many blessings that they give that they are not even aware of. It truly is a love/love relationship. Here I must state; if you don't love what you do, PLEASE don't do it. I have also truly be blessed to have been directed to working in hospice many years ago. As of the present time, I am privileged to be able to be a volunteer with a longer time goal of going out into the field once again as an RN. To all of you in hospice care-giving, let your spirits glow! I am filled with so much love & joy to have known each and everyone of you. As my daughter always says, you make my heart smile!

Thursday, February 13, 2014


Feb. 12, 2014

Well, wouldn't you just know it.  My 1st patient scheduled I was to see today. I had an early Dr's appt. for a pelvic exam.  Since I've had an increase in having abdominal pain, they wanted me to have cat scan today.  I had to cancel my patient's visit in order to do this.  I wrote previously that I never get around to exercising.  Today coming home from the cat scan procedure, we couldn't get up our hill and had to park way down on the main road.  From there I had to climb a hundred city steps to get to my house.  That's exercise enough for a week.  Luckily I was able to do it and breathe!  Bet my legs will be sore tomorrow!




#2
More Cancer Lessons:


I have so many thoughts running through my mind with the underlying theme being; I must start writing all of this down. So, here I go not knowing what will come out of my head or where to start this.

Since I have cancer, I think a lot of the things one thinks of if they know their time here on earth is limited. It was then that I discovered what a blessing this time is. If you know you don't have all that much time, you tend to, at least mentally, write a 'to do' list. On that list are things like funeral arrangements, writing letters to my children, thinking about what songs you want played at the service, etc. The introspection is phenomenal. I am getting to know me at last. Just knowing me has been something that I have often pondered doing. Now it becomes a reality. I find so many things funny. I laugh long and often. Poking fun at yourself & this disease is so freeing. It has been influential with having my family members stop denying that I am going to die. They are learning to accept this diagnosis. There is no 'elephant in the room'. We make jokes about my baldness and my chemo brain although my grandson, Ryan, says that I was forgetful before I ever had cancer & chemo!

For awhile I became somewhat depressed. I came back to Pittsburgh 2 ½ years ago with nothing of my 'stuff' except what I could carry on the plane. It was and is still in Alaska. During this down time, I had decided that I would not have any of my things sent here as I didn't know how soon I would die. If it was to be soon then it would be a waste of money to ship anything. On the other side of this I have done very well with the chemo treatments. I did not have any problems with my blood. It stayed within normal limits through out. In fact, my oncology team has been amazed at how well I've done. As my mood began to lift (with the help of some 'happy pills'), I became able to plan for some future. I am now aware that no matter how long I have, I will have some of my 'stuff' sent to me so I can once again enjoy them for as long as I am here. I have just passed one year since my diagnosis.


There are so many emotional ups & downs when one has been told they have a terminal disease. There are many blessings that come with this. Knowing that I have time, I am able to save my family from having to make important decisions at a time they are less able to do so. I am blessed by having the time to let everyone know what they mean to me before it is too late. I am blessed by being able to live in the moment of every encounter. I am able to see the deeper meaning and purpose of each character trait and how it has served each of us. This alone allows us to love unconditionally. Forgiveness comes easy. Asking for forgiveness is easy when you have such freedom of your soul. Nothing is out of bounds. It all matters and is important as we each search for our meaning in this life. I have learned that it is ok to be dependent on others at times. By doing so, I am letting others have that joyful feeling you get when you help/give to another. So you see this journey is AWESOME!
My 1st blog was really my third.  I am posting the 1st two.



CANCER LESSONS:
LEARNING TO LIVE IN THE MOMENT




I have several things on my mind today. I hope no one minds if I post some of my random thoughts this morning.

As a certified hospice & palliative care nurse now diagnosed with a terminal illness, I am more grateful than ever to have been privileged for many years to have served those on their journey who have finished what they were put here on earth to do. I have learned so much from those warriors. I am now experiencing what many who have gone before me have in the past.
I believe that my hospice experiences have allowed me to come to the acceptance stage as a smooth transition from the original thought of “Oh, my God, this can't be” to the thought that “It is what it is, and that is all that it is”. When one knows they are facing death, a whole new perspective of living comes into view. While I still have strong thoughts that my task here on earth has not been completed, I am more than grateful that I am still alive and enabled to continue whatever that is. And then a thought creeps in that if I haven't finished my job here, then I can't die. Quickly though, another thought comes upon me stating that maybe I will just die before I know what else I am supposed to do. I can't let that happen, I tell myself, so I do some serious soul searching. What is it that I still must do. Time is running out and this puzzle must be solved. Do I still have lessons to learn? Do I still have wisdom to depart to others? If so, what is it and who are they? I think the answers are beginning to come. I must be still and listen to what the Universe is telling me. What is my path now?
Being a hospice nurse has been 'my heart'. I have known that for forever it seems. When I started my nursing career I worked in Critical Care. It was there that my penchant for helping those that were not going to make it and their families needed me. Elizabeth Kubler Ross was my mentor. She taught me to talk openly and honestly, giving hope yet not false hope was how to do it. Allow open expression from those in my care. I have practiced this through out my many years, both professionally and personally.
Having had made many choices in my life, some good and some not so good, they were all learning experiences. Looking at the negative ones I am able to see much of the good that has come from them. They have taught me so much. The main theme is that much positive comes from negative. One merely has to see the other side of them. Sometimes it was difficult for me to do this and so I didn't learn what I should have. Therefore, as I like to say, I had to repeat the class until I finally was able to pass that course! But I digress.
Back to death & dying. My hope is that I have taught many others to have an open discussion re this subject. Even singly, we all can make a difference. This is a difficult topic for many to face honestly. I have given it 'a good go' as they say. Some have found solace in what I have had to say, and others, I'm sure, will ponder my words down the road and then find their peace. I have never pushed anything on anyone. I accepted where they were on the trajectory and started from there. This has been most difficult to do with my own family. As any mother will tell you, we want our children to be quick learners and be at the top of their class. Even when we are dealing with such a delicate, difficult subject such as the death of their mother or their aunt or their cousin, sister, close friend, etc.. I have done my best to treat this subject with all as light and as bright as I could make it. My goal has been for all to see the joy of being on this journey with me. And make no mistake about it, it has been joyful most of time. They have been learning some really tough lessons which will hold them in good stead through out the rest of their lives. I am so very proud to have had something to do with them learning these lessons on their individual paths and to have led them in the direction of who they have become as caring, compassionate, loving, human beings and cognizant of the needs of others.
The hard parts of this journey? Well, it has not been the hair loss! I now can take a three minute shower, it takes no time at all to dry my head. I do not have to fuss and claim any bad hair days, I save money on the electric bill not using a hair blower or curling iron. I'm sure you get the point. The chemo? Whatever pain I've had has come after receiving this. I have pictured the pain (notice I did not say, 'my pain') as the good cells and the bad cells in battle. My good cells always win and the battle ceases after a week of fighting.
I have been enormously blessed to have a most wonderful grandson, Ryan, who has moved in with me and is my primary care giver. He moved to Alaska from Florida to help me when I broke my leg and then back here to Pittsburgh where I have marvelous relatives/friends (and guardian angels) to help if anything else happened to me. Well, lo and behold I have was diagnosed with ovarian cancer and here is Ryan at the forefront once again! I am so proud of the young adult he has become. He now does the cooking, cleaning, shopping, laundry, and anything else that needs done as well as working full time! Although he is scared and emotionally exhausted at times, he is learning to cope with all adversity in a most positive way. He is my sounding board.
I would like to mention that when one is aware of their own demise, they become concerned about what legacy they will be leaving for posterity. I have found this to be true with my patients and now with myself. I hope and pray that I have had a positive influence on all with whom I have had cross my path or whose path I have crossed. Everyone is where they are for a reason. If we thought at the time that these engagements were negative, I hope we learned the lessons that were brought by them.
I say now, “Fasten your seat belts everyone, you're in for the ride of your life”! More to come!


Wednesday, February 12, 2014





IT'S THAT TIME AGAIN



I will just start writing as I can't figure out what to start with. It has been quite awhile since I've given you all any information as to what is going on with me. My chemo via IV ended several weeks ago. I am now taking an oral chemo called tamoxifen. I will have regular labs drawn which include a CA 125 which is a cancer marker. I must say here how wonderful every staff member at the Passavant Cancer Center have been. I am so pleased with everyone there. They never cease to smile and greet you (most often by name) whether or not they are part of your individual team. Physically I am not where I would like to be but then I have been pretty lazy about doing any exercises. I am sure they would help but I never think of them until I'm ready for bed. So much for that. Also, each day brings a different activity level that I can accomplish and still be able to breathe. Living with this disease brings one to an entirely different life style. Being one that had to be productive every waking moment, I am now content to do next to nothing that is really productive. In my mind I am very active and think of many things to do. I just don't get around to doing them. Soon I won't be able to blame it on the chemo that has slowed me down. You will all know that I am damn lazy! I have become a pro at changing thoughts. I'm a believer that what one thinks becomes what is. In other words, thoughts are things. I am a realist and know that this disease will take me to the afterlife, but in the meantime I am in control! Ask my kids, I have always tried to be the 'controller' (as they grew older, it seldom happened successfully). Don't get me wrong...I'm aware that my demise is likely, I just won't entertain negative thoughts for longer than a few seconds. Remember, we cancer patients live with this disease 24hrs/day, 7days/week. Think of how awful life would be if one were to dwell on thoughts that are not happening at the moment! I prefer to live in the moment...besides, I can't 'control' the future. So, in thinking about what/when something will happen is a lesson in futility. I am happy that I have been able to accomplish as much as I have. I am so looking forward to speaking to my colleagues about a clinician having become a patient. I think that what I have to say will surely help others be more comfortable in conversing with a terminally ill patient. As I have said before, I am the lucky one. I get to deal with my mortality and I consider that being one step ahead of the rest of you! Love is the answer. Make sure you show it with everything you do. Love what you are doing. That includes doing the dishes or polishing the furniture...be mindful of everything you do or think. Keep changing those awful, sad thoughts. Our brain is a marvelous organ. But, even it can only think one thought at a time. Think about that. If you were a carpenter and wanted to place a nail where another nail exists, you would have to push the first nail out with putting in the new nail! The same is true of thoughts. I've probably rambled enough for this time. I have created a blog page. The address is: joanbaldwinbranch@blogspot.com. The title is: meandcancer I also had to get a new e-mail as my yahoo acct. was hacked. New e-mail: joanbaldwinbranch@gmail.com I used my name for these as it's one thing I might always remember!