Me busy living!

Me busy living!

Sunday, January 29, 2023

Getting busy...

As usual, I am writing after a long abscence, not because things are bad but because things are good.  At the end of November, I had a CT scan instead of a PET and it showed that one of my two tumors have "resolved" and the other one continues to shrink.  What that means is that the immunotherapy is working and I have less cancer than when I started!!!  I now am scanned every 4 months so that takes away one epidsode of "terror week" as Jim and I call it.

I really am doing good.  I continue to work and enjoy it.  I love being a nurse and helping people as I always have.  Behind the scenes there are days of doubt and sadness...especially when I don't have the energy to do some of the things I love.  But honestly, for the most part...life goes on.

Last Spring I got a phone call from an old friend telling me that we had dates in Jan 2023 at a Hut up in the Colorado high country by Leadville.  It was for 2 nights and she invited me and my family to join her and her family.  She and I go way back to Howie's kindergarten days and have a great fondness for each other.  I got the word out and the kids all said yes and took the days off of work.

January 2023 came up faster than I thought and around November, I decided it might be time to research the hut. It was rated an Easy to moderate ski in and it was in a beautiful mountain range about 3 hours from the house. The ski in was 6 miles and lot's of "gentle elevation" until the last few miles where it went mostly up.  The family was in, sans Christie and Kevin, and we got to planning.  Jim and I started spending time XC skiing up on Guanella Pass and trying to get in some kind of shape.  Well, of course, Jim (who is part Mountain Goat) was fine and had no reservations.  I, on the other hand, always have anxiety about outdoor things and need to get in shape.  As I spent time on my ski's, I began to feel stronger and more confident.  We decided to go out the weekend before with packed packs to do the last dry run, and I had a heck of a time. I had no energy, my joints ached and could not make it a mile.  My feet hurt from the boots, my back hurt from my pack, my stomach went wild and I couldn't get myself out of it. I decided I was not going to go and ruin everyone's time while I suffered through.  I cursed the cancer, the fatigue, the immunotherapy and myself for not training earlier or harder.  I even felt like Jim didn't think I could make it...

Remember earlier when I said, "behind the scenes"?  I went to work and pretended that it was gonna be okay but I was depressed and all the feelings of my illness journey came back.  I cried and when Jim tried to talk to me, I told him he didn't know what it was like to be me and in my shoes...`

Then I talked to my kids and all 3 said they thought I could do it.  They all said that this trip was mine and that I was the one that got them excited to go, and " One bad day in the outdoors is not a referendum on how every day in the outdoors is going to be".  I figured out best case scenario and decided to go.

We left on Wednesday morning around 6 am and drove to  Leadville, gathered our group at Safeway and headed to the trailhead.  It was 12 degrees when we put our packs, ski's and bundled up for the trip. I felt pretty good from the beginning and it snowed gently the whole way in.  I worried that I was holding up the gang and I said so.  Besides my family and Katie's, there were friends from Steamboat who were the ultimate outdoorsmen.  Now, really, do they want to be held up by an old lady with cancer?

As we skied, we split up into groups and those changed as we went.  The only thing that stayed steady is that I was pulling up the rear with Katie, Mac and an outdoorsman keeping me going.  We got to the turn off to head up hill, had a quick snack and water and began the up.  It was so hard, and I was struggling.  I would count to 100 and stop to breathe.  My pack seemed heavier and my energy was waning.  I was slowing even more than even the kindest of folks wanted to go, but heard not a peep from them. I only heard encouragement.  We got half way up the hill and my skiing had slowed to a crawl.  I kept telling myself to keep going and I was, but it was obvious I was gonna take awhile.  Then from  the top of the trail comes one of the outdoorsmen and takes my pack and starts skiing with us.  He tells me we were getting closer and to keep moving.  I started moving ever so slightly faster and he is talking and making time go faster, and he has my pack!  We finish the next mile or so and another outdoorsman comes out to cheer us on, knowing I was the problem but not saying a word.  Before I know it, I see the gate to the hut and start to cry because I made it!!!

As the first night goes on, not one word about me being last, being slow, or anything of the like.  When I thanked them, they talked about how it wasn't easy and how awesome it was I made it and should be proud.  We ate meals together and learned about each others families, how much the whole group loved the outdoors, and played games and laughed.  The serious powder hounds went out on day two and had the time of their life in deep powder and gentle  hills.  The sun shone in the cabin for the few of us that stayed back and I napped on the couch and thought a lot about life.

When everyone came back that night, we had delicious chili, old fashioned's made by Howie, who I never knew could mix up such fancy drinks, food from everyone as a starter and the warm fire in the hut. It could not have been warmer with new friends, great food, and great drinks....not to meantion the warm fires.

The trip out was not nearly as daunting and I did it by myself with a group in front and a group who left later to get some more of that precious powder stash.  It also wasn't as beautiful in retrospect.  You see, I learned something about needing help and accepting help.  I learned that sometimes I am the one who needs the help and if that time comes, for the helpee or the helper, magic happens.  I never want to be the one who needs help or encouragement. I always want to be the strong one and the one to take care of others.  This trip showed me that being either one is valuable. 

When humans show vulnerability, there is always a human that will feel that and step in to help, comfort and encourage.  Everyone has days that we aren't winning and days that we need help but hesitate to ask. There are also days that we are winning and need to be aware that the person in the group is not.  When we reach out and meet folks where they are at, the magic happens!  The love of human kindness lifts the ones needing comfort and  the comforter feels the appreciative love right back.  It helps us remember we are human and we all go through tough times. What seems small to someone on the outside, may be so much more to the person needing the help. Lord knows all these gestures of kindness helped me.

So once again, as we all go through this life, with it's ups and downs...know that some days you are the comfort for someone and some days you need the comfort and neither place is wrong or right.  It just is.  So let's be who we are, who we are called to be and put love and kindness first.  I know it made my trip one of the best.

We'll tawk soon,

I love you all,

Terry



Sunday, October 16, 2022

Life is different these days...

It's Sunday and lot's of Sundays I go to church.  Not this one,  I will watch it on you tube, but today, I am in my head so much, I thought I would stay home and try to write a blog.  I haven't written in a long time so I thought I would catch you up on things.

June 22, 2021, at around 11 o'clock, I my  R kidney taken out of me that was full of cancer.  I got to experience all the things cancer, the what if's, the terror of learning that I could be dying, the humbleness of having so much pain that I tried to stay loaded on Morphine and then said things that made no sense for days while I tried to recover.

Then I came home and recovered, felt really good and prayed to God that when the surgeon came out and told Jim and Christie that he got "everything"...that he really did!  I walked around in gratitude and hope this was a big one off and how lucky I was that I got to experience all this "goodness and learning" because I am a hospice nurse and I am the luckiest person in the world.  I made my oncology appointment  3 weeks later because, " Oh yeah that's right, I had cancer" and the oncologist tells me that "I just have to watch you every 3 months because at this time, you are cured!"  Jim and I walked out of the office holding hands and thinking we just won the lottery of life!

I healed up and we started doing all the things that we did before, biking and hiking and having our cocktails at happy hour.  Life was so good we could not believe it!!!

I went to Florida in Nov 2021 to visit my college buddies (scheduled when I thought I may be dying)  and then family after my first scan and results were good, but now that I look back, not perfect.  That scan gave Jim and I the glimpse of terror that now comes every 3 months with scans, but  then I didn't think too much about it as I was still "cured" per the oncologist!!!  He asked insurance to put me on Keytruda, an immune therapy that just came out for folks who had bad kidney tumors.  I was so happy when insurance approved and started my every 3 week journey in the "chair" for my IV immune therapy.  The good new there was that I tolerated it well and had no side effects.

Life went on just like before, but  now every 3 weeks I sat in the chair for 30 minutes! I lived in the thought of  "I can do this and I am feeling great" and I biked at Buff Creek and continued to hike trails and not even think about it. Life was so good and my family just kept doing what we always do.  Howie was in Michigan, Mac and Elise in Minnesota and Christie and Kev in Lakewood.  

February 2022, terror week rolled around.  I got my scan and have learned by now that the results come when the radiologist reads it.  I had my scan on a Wednesday and was supposed to go to the oncologist the following week to get results, but I was hoping they would come earlier.  Well, they did.  It was a Sunday morning and Jim and I were drinking coffee at the kitchen table before church and I checked my email.  There was the email from the oncologist portal saying I had new results.  Because it took 5 days, I was thinking something was wrong so I burst into tears and started to cry as I opened it.  I hesitated when the report came up and was afraid to read it and I was right to be! 2 tumors in my lung that were not there before.  The final reading said, tumor growth and Stage 4 metastatic disease!!!!

I fell deep into a hole and didn't know how to navigate this.  Who do you tell?  Am I on my way out and if so, what matters?  I'm a Hospice nurse and I have watched folks have a ton of hope only to learn that nothing worked...Is that going to be me?  As I spoke all of this out loud, Jim would say, "Terry, we'll just  do the next thing. We'll go to the doctor and see what is next."  I sent an email to my boss and said I needed the week off, told Jim he needed to tell the kids and sat on the couch.    I didn't want to talk to anyone, think about anything else except the what if's and cry in my drink.  Like I said, I am a hospice nurse and understand dying but as I learned that day.....I am a hospice nurse for others and understand dying...for others and his was me!

Jim and I went to the oncologist the next week and he recommended I start another med, another immune med that will work on the cancer.  He told me there aren't too many side effects.  "you won't lose your hair like regular chemo" he said. Fabulous....

By the grace of God, I got fast tracked into UCH for a second opinion.  They recommended a PET scan and lung biopsy, which I had in the same week.  Results were mixed and the Oncologist at UCH, who could have been my daughter, said I was getting the right treatment. I told her through tears that I wanted to last until my son got married next year and she assured me I would.  Let's hope so, right?

As for now, I continue on with 2 immune therapy drugs and feel okay.  To this day, I am doing that.  I have terror weeks every 3 months and the last 2 scans have been better!  I have smaller tumors, no new anything and am blessed.  Side effects have been a little more brutal than I would like and the fatigue did overwhelm me at some points.  I mean, as I go along, It could be so much worse, right? 

 After my February set back, I now have all my kids in the area....I see them regularly and my family sustains me.  My son and his love are getting married and I am planning on being there to celebrate for sure.  I am not saying no to anything that sounds fun.  I realized that while some folks have a bucket list that has travel at the top of it, I do not.  I would love to travel, but I would rather be spending time with the people that I love.  I want get togethers with my loves, time to laugh and reminisce about the times of life that made us close and how we got each other through this life.  I want authenticity, commraderie, and comfort.  The things I think of with enduring love and friendship through the years.  I want you to accept me as I am and I will for you.  

I honestly cannot believe I have been on this journey for 16 months! I have cut down on work and will continue to figure that out as I love being an nurse!  I go to counseling to try to keep the demons of fear and anxiety at bay, try daily not to sweat the small stuff, and never leave a gathering without saying I love you, and kissing them goodbye.  Even if I last 20 more years, which is highly unlikely, I want everyone I love to know I do.  I don't count on do overs and I try not to take any time for granted...

We'll tawk soon,

I truly love you all,

Terry

Sunday, September 12, 2021

" Such a beautiful family"

 About a month ago, when I was recovering from my surgery, I had this overwhelming feeling that I wanted to have my family get "professional" pictures taken.  I had talked to the kids before about it and they balked about it, but when your mother who just got her cancer removed asks...well, you know.

The next time we would all be together was for Jim's 60th birthday.  I asked my friend, the professional photographer, to take pictures if she was available that time and she said she was. I invited her and her hubby over for dinner and the pictures were taken.  

Fast forward a few weeks and the pictures were emailed to me to look at.  At first, I looked and my first thought was....." I look terrible".  Then I went through them and thought...."Jeez, Jim looks so old."  I looked at the ones with all of us and decided they were good, I mean the kids look good...they look like themselves and how I see them and I was thrilled.  I started to think about how Jim and I look and realized that I really don't look at him or myself much.  I mean I look, but I don't see myself or Jim.  I see us and don't think about what we really look like.  We tell each other that "we are who we are"  and go about our lives.

Last night, I posted the pictures of my gang on Facebook.  I got tons of responses that said, "Beautiful family" and I was pleased.  Honestly, I didn't expect that response and I said to myself, " we are far from beautiful."  

I have some friends that have "beautiful" as in looks, families.  They are very pleasing to the eye and have the looks of models.  That, I'm aftraid, is not my family.  " We are who we are" and I don't say that in a "not pleasing to the eye way" but we are all a combination of each other and the kids are too.  We are regular people who try to remember what life is about and have fun when we are together.

Then I got to thinking...Every family is a beautiful family!  They are a combination of each other, of the living daily as they grew and the leaving each other to brave the world alone.   Family is a beautiful patchwork of the quiet one, the loud one, the smart one or the ones that don't fit any mold.   Families are all missing teeth at some point, whether to get dentures in the older folks and growing new teeth in the younger ones.  Both of those times are beautiful.  There are times when parents don't feel like they have beautiful families, when there isn't a moment devoted to anything but keeping the kids afloat, or times when one of the parents cannot stand the other and the kids are wondering what is going to happen with their family.  It is all part of being human and having misunderstandings and vying for power.  It is what every family does.

I have been listening to podcasts lately and a quote I heard that I really resonate with is, "the enemy of happiness is comparison" and I believe that.  I used to be such a "comparer" and saw folks that I thought were the "perfect" family.  Then I would look at my kids and family and think I needed to work harder and figure out what I needed to do to make my family "better" as if who we were at the time was not good enough.  I regret that now because honestly,  who we were then hasn't changed much and I love who we are now.  They were loud, energetic, argumentative, loving, kind and busy...Like every family learning to grow up and learn about life.

So I say it again...every family is beautiful...in their own way.  Maybe beautiful in a different way than some of us find beauty.  They may have different views than you and do things different than you.  They may have a giant home or a little cabin with no room for anyone to have their own room...They may yell too much at each other or not talk at all to each other.  But they are a group of humans that are infinitely linked and doing the beautiful work that families do.  There is no question the work of families staying together and supporting eachother while navigating life is stunningly beautiful!

So thanks for all the comments about my beautiful family.  I say right back at you with yours, professional portraits or not!

We'll tawk tomorrow,

I love you all,

Terry 


Monday, August 23, 2021

You can't change the past...

 Hello,
I am doing well and am feeling so much better than I did for quite awhile.  Didn't really notice how bad I was feeling until I felt better.  I blamed it on menopause, COVID, long hours at work and so on.  As my husband says,"can't change the past" so I have been doing inventory on my life and trying to change things.

I always thought of myself as an authentic person.  I hoped to be very real and live my life that way.  This big "life scare" has made me even more comitted to love the people I love harder and not waste time on things that don't matter.  It's not easy to change life long habits though.  It takes time...and honestly I don't know that I have a ton of time.  I know I am cured and I know that I feel great, however, the what if's can take over my mind if I let them.  While "what if's" aren't bad in many cases, in mine....I always go to the negative.  I hate that about myself but being my authentic self...

Yesterday, I was watching my daughter and her friend, Jill, do a triathalon.  They swam a 1/2 mile, biked 12.5 miles and ran a 5 K.  I told them I was going to do that with them early in the spring and would start training for it, but never had the energy after work to do it.  Finally I decided I was too old and tired to ever do one again.  I wasn't too sad as I was thought I was being dramatic and thought that I would get my act together at some point and train.  Anyway, yesterday, I heard myself say, " If I am alive next year, I am going to do this tri with you guys".  Why the hell did I say that?  Even if things don't go my way....I suspect will be here at this time next year.

It makes me so aware of what my patients have gone through in my career.  I understand why my mother never went to the oncologist to hear her diagnosis.  She was scared and was hoping that she was healthy.  Now I know you face things head on and as Jim says, "do the next thing."  

I have been listening to church hymns during the day.  It has been so easy to talk about my faith when I am feeling good and have the world by the tail.  I can do it now, but it is not so easy.  Why?  Because I feel like I really need to believe it.  I have questioned so much through my life about God.  I watch my children who were raised in the church question and they are right.  How do you believe something you don't see without asking a few questions.  I have been doing that for years, asking questions in my head and wondering why things happen.  I really struggle with the "God's plan" stuff especially with patient's I care for.  If a family says that, I just stay quiet and listen as I struggle with those kind of things.  I wish I knew all the answers, but we don't....I don't, you don't and to act like we do makes us not authentic.

Having said that, I am on a journey.  A journey to love harder, not waste precious time with things that don't matter,  honoring time and being aware of it.  I am praying....I love to talk so I talk to God a lot, and hoping for the gift of time. 

 Honestly, I feel great, and I have been taking inventory of my life on a weekly basis.  I have a great husband....amazing kids or should I say, young adults and so many awesome friends.  I am overly lucky in so many ways...

I have some free advice.  Don't wait until you get a wake up call.  Take inventory now of what really matters to you and focus on that.
Do you wish you could spend more time with your spouse?  What is holding you back?  Figure it out and make it happen.  How about your kids?  Do you need to spend time with them?  Then do it.  

All I know is "you can't change the past" as Jim Ritter says, and I have learned that tomorrow is not guaranteed....


Get after it!!
We'll tawk soon,
I love you all,
Terry

Thursday, July 15, 2021

Dates with Doctors...

Good hazy morning from the top of the mountain!  I want to thank all of you for the good wishes!  I am feeling really good, better than I have in the last year and know some of it is the positive vibes and prayers that were lifted up for me!


On Monday, I ventured to yet another doctor.  I am the proud owner of an Oncologist...never thought, or I guess I should say, never wanted my own cancer specialist.  But hey, life is like that isn't it?  You ask for many things that you don't get and many times you get things you don't ask for!


As my kids and Jim know, I hate going to doctors.  I was raised in a home that we didn't go to doctors for years and years unless we were unable to function due to an illness.  My mother used to say, "Don't go lookin' for trouble" and I lived by that mantra for many years.  Lemme tell you that in this instance, the mantra did not serve me so well.  I mean, yes, I went for my mammograms begrudgingly, my well woman stuff but when I had things I could take care of, I would work my magic and take care of them.  

This time is different as we know and Monday I began to panic about what my new friend, the oncologist was going to say.  I wondered if my other doctors had not told me the whole story and there was more news to digest.  I walked to the end of the road and used my best calming techniques of late to put this anxiety somewhere and it helped.

Jim and I arrived at the office and we waited until the gal at the check in could take my insurance card and co-pay, and then sat down.  I looked around and saw the patients that had similar diagnosis that I cared for and have tried to serve so well.  There were older folks that looked frail and seemed to be confused with all the paperwork, there were folks that were rolled in with a wheelchair that could not walk long distances, and then like a rush of energy, came this younger gal with a bald head and beautiful dress woosh by me in a hurry to get somewhere.  I thought, "yeah, I am in the cancer club too."

As we were waiting to be called, I stared at my hands and thought of all the patients I cared for that probably sat in the same seat as me thinking about the future of their life.  I tried to push those thoughts away but I couldn't.  I mean, I have to think of all sides of this right now and find where I can find some peace. Then I looked at Jim and thought how he was such a good man and now he we have this journey to go through together.  I always thought about him as the long suffering husband with me as his wife, just with regular life.

Finally they called me.  "Teresa come this way" and I walked to the scale, got my vital signs checked and we took a seat in the exam room.  I could tell the anxiety was beginning to take my breath away as I tried not to think of worse case scenario.  Once again I went down the road in my head to all my patients and thought of how they started in a visit like this.  I thought of all of the ones that were so strong and loving and fought the fight and then called it when it was no longer the way they wanted it to go.  I thought of the ones that fought the fight until the last breath as well. I looked at the signs in the office of the drug trials and medication for metastasis. Then as I was going to worst case for me, my oncologist walked in and introduced himself.  It was surreal and I began to count my breaths as he was silently reading my records. Then he took a big breath and began telling me about what he thought about this cancer.

He was data driven at the beginning...odds of this and survival rates of that.  I appreciated the info although it did make it so real again in so many ways.  Then he got specific with my lovely brand of cancer, and gave me some info about how things can go and I had to choose.  After listening, he talked about clinical trials for prevention and said there were none available for me right now.  I told him I knew he liked trials and without missing a beat, he said, "that is how we are going to cure cancer." Then we made a plan for me.  He said he and I would see each other every 3 months for a few years to watch me.    A quarterly date with the CT scanner and oncologist...."great I thought, something I never thought I would have to do, but okay".  He noted that I am cured right now and we want to keep it that way and monitor me closely right now.  I agree and feel as though this is the best case scenario for me.  Then I asked all the questions about diet and exercise and life and he said....."Don't think like a nurse with scenarios, just listen to your body and if something is off, call me, send me an email and we will discuss how to deal with it".  "Go live your life and I will see you in three months", and stood up and walked out.

Jim and I sat there for a few seconds and stood up and walked out.  I saw an old friend on the bench outside who was waiting for her husband to have his chemo.  She and I cried as we wondered how life has brought us to this place.  Not in an angry way and not in a "why me" way but just how the twists and turns of life are complicated and you cannot predict when it is your turn for stuff like this.

I am in a funny place...trying to figure out how to move past the worry of what could be, put it somewhere and honor it as I go on to do the things I want to do and live my life.  

So for today, all I know is that I can walk 3 miles to the mailbox, nap like a bear in hibernation, kiss my husband whenever I need to (which used to be not on my to do list very much after 32 years) and do things slowly if I want.  The only thing I know that is not changing is right this minute and the few minutes behind it. 

Otherwise this life, my life is going to unfold how it does even if I plan it all out to be a different way.  And yes, we all know that is true whether you have an illness or not, but having an illness that affords you a date with an oncologist and quarterly CT scans makes it even clearer even if you are cured......

We'll talk tomorrow,

I love you all,

Terry







Thursday, July 8, 2021

When the rubber meets the road...

 Hello dear friends, 

It has been quite a while since I sat down to write anything in this blog. I feel as though now is the time to catch up with you all and let you know what is going on.  I also give you a chance to think about your life after COVID and what friends and time mean to you.  In the last years, I am not sure of who I became.  I worked crazily through COVID, trying to be the hero for anyone who would listen and let anyone who listened know how busy I was.  What I have learned is that I did not make enough time for what I deem most important to me.


"What the hell is she talking about here" I bet you are thinking. "When does she get to the hospice stuff or the family stuff that we used to read and laugh about?"  Well, I am not getting to those things in this blog today.  I am going to give you some good advice about how life changes on a dime and when you have time to think about it, you are stunned how far you have come from what you really need and want.  At least that is my story today.


On June 13th, I turned 57 and told myself I was getting really old.  We were going camping and I twisted my knee loading firewood and the campout was scratched.  To be honest, I was in this weird mood because I wasn't quite right.  Not sure what was wrong but didn't feel quite right.  Having said that, if I was really honest, I hadn't been quite right for a while and thought I was just working so hard and not getting any down time.

Long story short, on 6/22 I became a person headed into the OR to remove a Kidney full of cancer and someone who will live with one l kidney.  From diagnosis to surgery was 6 days and before I knew it, I woke up in the hospital, humbled to be the patient with an uncertain future.  I became the person that I take care of and coach back to health and living life.

Holy Shit!!!!  While you contemplate the uncertain future, your priorities and what you really value appear crystal clear.  The husband that you are married to for 32 years all of a sudden becomes someone that you never want to leave, want to hold his hand, and just sit quietly with. You want to take back all the things that you said that were not so nice, but you can't so you promise that with your time left, you will be kind and loving.  You lay in bed and wonder if you told your kids you loved them enough and that you are so honored to be their mother....and if you did, is it enough to keep them remembering me through the rest of their life if this is it?  Oh and remember those friends that you love so much but didn't make time to see because you were so busy? All you want to do is talk with them and let them know that you miss them...

Before my surgery, those feelings washed over me...who do I need to make peace with?  Who do I need to tell that I love them and will it sound hollow now that there is probably a time line?  Where was I when life was boring and I didn't make time to send a text to check in?

My next thoughts turned to my faith, my relationship with my God...I can tell you that even went by the wayside because I was too busy.  I certaintly called on him when the results came back and I was terrified but how about the times when things were good and I didn't even think to send a Thank you up to the sky.  

Why am I writing a blog about this?  I need to remember this time in case this is it or hopefully, I look back in a year or two and do a check in on who I am and who I said I want to be.  

As you can imagine, I am not working at this time...I am recovering.  I am reading, napping, doing a lot of nothing but also I am thinking.  I am thinking about the second chance that I have been given to slow down, to live in the moment and to choose the positive.  I am thinking about my priorities and what I want them to be in the last years of my life.  I am doing the big inventory of what matters to me.  Am I the person I wished I was?  Not really... some parts are and some are still not quite there yet.  Am I willing to make the big changes in life to be that person?  I would  say that I am willing to now, but really, I needed to be hit on the side of the head by a 2 x 4 to really think about it?  Really is that is what it took?  Sadly I am saying yes.

So here is your pro-tip for today and the days to come.  Do a check on who you want to be, think you are and who you are.  If you say that you want to be there for the people you love, are you?  Do you make time to see the folks you say are your dear friends to just connect?  If not, why? How do you fix that so you are the person you want to be and your behavior shows you are?  

Along with the thinking for me is the physical recovery, and honestly, as Doris Joy used to say, "I'm no spring chicken anymore" so it is gonna take some time.  I will have to learn to quiet my mind and listen to doctors on what the next steps are.  I will do that and I will also make sure that I live in the now and not in the scary future.  That's gonna take some work but I know I can do it.  

As I look around, I have no shortage of amazing times and people in my life.  I have family, friends, church, work and all the things I could ever need.  Now, I just need to rest into those things and hope for the best.  Oh and if you wanna have lunch or dinner and add a nice glass of wine...let me know and we can plan it.  I am going to learn to say yes to things that feed my soul and no to the things that don't!


I love you all. 

Terry




Sunday, September 29, 2019

Are you ready?

After a long hiatus of writing, I am back.  It's interesting how my brain works and how my life works and when you add 55 years to the mix, it is almost scary.  I haven't taken the time to sit and think for a few years now as change has been the name of the game!  From aging and chronic illness, to graduations, to peace corp volunteers, to job changes, to unemployment, to more graduations, to immigration filings, to marriages, to even more graduations, to empty nesters, to married adults in my basement, to jobs at home depot and finally to a road trip to Michigan to send my last off to adulthood at a new job!  Just writing that list is exhausting and that doesn't even match the amount of emotion that has gone on with all of it.

I was lying in my bed sick for two days last week when I felt the familiar tap on the shoulder that I have every now and then my friend "the holy spirit".  I ignore the taps and sometimes they go away.  If they continue I have no choice but to listen.

All of a sudden, I am hearing those voices in my head that I used to hear when I blogged before.  I used to call it "ideas" rattling and they would rattle around until I put them down on paper.  Well, those pesky voices are back and just on a whim, I sat and began to read my old blog entries and knew it was time to begin again.

Bear with me because I am really rusty but I need to get these thoughts down...

I'm a Nurse Manager at the company that I have worked at ever since I went back to home health and hospice nursing in 2008.  I have the most compassionate, hard working and big hearted nurses that are trying to balance life, kids, husbands, and demands their job while caring for and loving our hospice patients out of here.  Oh, and I forgot, they are patient advocates to the "nth" degree.  They are not going to "convince" anyone to choose hospice over another choice even if hospice is one choice or no choice at the time.  Sometimes they won't even talk about end of life/hospice care with a patient that has no other options for treatment because, "they're just not ready"...

When they come back to the office and say that, I find myself launching into a diatribe many times....

Not to be disrespectful to anyone,  but as I have navigated the hospice landscape (doesn't that sound like a manager?) for many years and feel so passionate about folks knowing all the choices, the concept of  "just not ready" for hospice... makes me speak up.  As a nurse in this field,  it is not my job to convince anyone of  anything but my duty to educate on all options for care that is available to folks at such a precious time.  Here's why I think like this after my last couple of years...

I wasn't ready for my youngest son to leave the nest and go to Michigan from Colorado to work when there are perfectly fine jobs here and he could be close to the family.   Even if I wasn't ready, it happened.  Do I wish he was still close?  I absolutely do... but the plan was for him to leave us and spread his wings.

I wasn't ready when my daughter left for the Peace Corps and then came home in love with a gentleman she met in Peru who needed to go through immigration and doesn't speak English.  "Slow down, give it some time" I said. Time was not on their side with immigration.  So while, not life and death,  even if I wasn't ready, they are married and making quite a life for themselves.

And the final example of the biggest "I'm not ready" was when my husband was phased out of his job after 30 years and had difficulty getting another so he went back to college and got his degree.  Then I was even more "less ready" when he finished and interviewed and after many interviews, he is "too qualified" and which means "too old" (and he'll tell you he is good and old) and we learned that our option is to keep moving forward living the life placed in front of you with as much joy and time spent with our loves.

So back to "I'm not ready" for those folks going through treatment and feeling like the have to keep going or they will die.  No one is ready to die, right?  If you've been told you have a terminal disease, it may be difficult to wake up but you do and you navigate your symptoms and feelings and treatment.  I would guess you worry and feel pretty powerless at times.   You know your treatment plan and you take it a day at a time and come through. It is not easy but you would not choose anything else.  You had all the options and you made your choice.  To you I pray for easy treatment and total healing!

I guess this next paragraph is to talk about choices for those that are not ready but are not offered all the options...

Hospice care is another option and not only when there are no others. Hospice care is not the choice of giving in.  It is more of the choice of honoring the precious time that is given to you.  It is honoring the time and making it "good" time or at least the best time you have with your loves when "you" decide that you can't take another minute of treatment or your doctor offers no other options. 

Look at it this way: You can have 10 days of time sitting in a chemo chair talking to the pretty nurses with your wife sitting by you.  Then she can drive you home and you can sit in you chair at home or get in bed and sleep until you wake up to throw up.  Maybe you tolerate the chemo and you don't throw up but you fatigue and sleep many days straight after the treatment.  Before you know it, your food is tasting metallic and your wife is waking you up to eat and you just want to stay in bed and sleep.  Finally it wears off some and you plan your good days around MD appointments, blood draws, and tests to see if treatment is working. So you and your wife get on the roller coaster and go see Dr. So-n-so and he tells you that it is not working but there is a trial and you have can't eat this and that,  and you'll have stop taking the pain meds that you are needing to stay "somewhat comfortable" and in a few weeks we will know if you qualify after more blood tests and scans.  He thinks you will but can't be sure... and if so, he thinks it will buy you some time.  So you go home and your really thinking your are so tired of all this but you and your wife decide to participate.  You have your plan and I honor that but you still have another option that wasn't offered.

What if they offer hospice as a choice?  Say you choose hospice because you can't stand the chemo or to go the the hospital one more time and while you aren't having treatment, you want to spend time at home and you want to see if there is a better way.  So the "hospice people" call and schedule and your nurse shows up and begins to ask you questions about your journey, you pain, your sleep, your appetite and how your wife is holding up.  She asks you what and who you love and then poses the question, "how do we figure out how to get you to spend your time the way you want to?". You answer and she talks about medications that are different for pain and how if they don't work, after a few days, we change them and we don't stop until we have found the right one so pain is not the first thing you feel every morning.  Then, you ask how this is going to work and she asks you how you want it to work, and what your priories are.  She says she will report on all the things she sees...the good, the bad, and the ugly.  All of a sudden, while you know the end is not going to change, maybe the journey to the end will be better than it has been.  You will be able to ask all the questions and get an answer and if there is none, you will know that.  The nurse puts you at ease knowing you can call day or night for help and so can your family. All of a sudden you sense you have a small bit of your control back and maybe you will will be able to find the right drug to keep you comfortable so you can go fishing, hang with your kids, or do some of the things you haven't been able to because of your pain.  You start feel some hope after a long dry season of battles and little hope.

It's about good time...and everyone has a different definition and different ways to spend our time.  It's about knowing when enough feels like enough but you feel like there is no where to turn, there is a soft place to land.  It about knowing the goals have changed from cure to symptom control, good time, comfort and your loves.  And that too is a choice to be thought about when you and only you decide.  But you have to have the information.

That's why after all these years of loving and caring for people at the end of life, my passion has not waned...

May you never have to make a choice you aren't ready for,
May you have an abundance of time with your loves,
And may that time always be good and peaceful!

We'll tawk tomorrow,
I love you all!
Love,
Terry