Long Absence/Explanation/MDS/Non-Hodgkin's Lymphoma

Hello! I have been away a long time.  A lot has happened in life since my last post a year and a half ago.  Paul and I spent a lot of time traveling in late 2018 through November of 2019.  Then there was work and grandson (who is 13 and 1/2!).  When we returned from our last trip in 2019 (a visit to Philadelphia to see our son and to tour Gettysburg, plus a Civil War ball), Paul was diagnosed first with severe anemia, and then cancer (MDS and non-Hodgkin's Lymphoma).  He is going in for a stem cell transplant in May which will hopefully lead to a cure, God willing.
I'm not sure if I will be able to blog much, but in a subsequent post I wanted to post a checklist for pre-transplant patients and caregivers. I also have been posting YouTube videos relating to Cancer Caregivers.  My channel is here: Celeste's Channel.

This Christmas Season 2016

Christmas this year was/is unusual.  It was very musical choir-wise, not harp though (at least - not played by me, we did a special piece with choir and a professional harpist).  I was on the "bad list" at work, so was scheduled for all of Christmas, other than a small window of time later on Christmas Eve. Robert is in Portland, and Julie and Tyler went to Michigan since I was stuck working.  So our big family dinner is yet to come.  But I will give you the highlights so far, starting from early December.

Early December: 

Handel's Messiah, a new church for us, with a new choir.  

I was asked to sing a "O Thou That Tellest", my first solo.  

It was nerve-wracking, but all went well.

Our fireplace needed extensive repairs: 

Tuck-pointing, chimney cap, a stainless steel liner, and a fan.  ($$$)  

But all is well, and I love being able to use the fireplace again.  

Before Christmas frivolousness:

Christmas red toenail polish!

(And a kitty who likes to rub his chin on toes!)

Christmas Eve Choir Music:

Multiple pieces, including selections from Britten's "Ceremony of Carols".  

We had Ben Melsky as our harpist (awesome, playing the difficult harp accompaniment).  

I practiced long and hard on this piece.  

Musically it is difficult, but also the text is Middle English and Latin.  

(Here's a sample: "Wolcum Yole!" Voci Nobili with harpist Willy Postma)

In a nice surprise, we have been slow at work.  I had to go in from 11 AM to 3 PM, but then was downstaffed for the rest. Paul, Kristin, and I had a nice Christmas Dinner together - enjoying each other, but missing the rest of our family members. But we will all be together next week.  Julie and Tyler are home, and Robert will be visiting from far away Portland.  

(I haven't seen the lad in four whole months!)

Playing on Megan's Harp (Surgical Procedure for My Harp)

A description of a harp repair in nursing terminology (similar to this post from 2009):
My harp needed to go to the hospital (Lyon & Healy harp repair department) for some major surgery. There is a broken bone (small attachment in the mechanism that came loose, causing this awful buzz while I was playing) requiring orthopedic surgery (repair in the framework of the pedal mechanism). The break is small, but requires a long, involved surgery to repair.  The problem is that the harp needs to be prepped (entirely unstrung), the mechanism removed and opened up, in order to fix this small problem.  I have been putting this off for over 18 months ($$).  My poor baby has to stay downtown for over two weeks.  A few days for the repair (surgery) but then another week and a half or so for the technicians to tune and re-tune the new strings (recovery room and rehab).

In the meantime, a fellow harpist, Megan, who is very busy with her life and not able to play much at all right now, agreed to let me rent her harp for the duration.  Her harp is a Lyon & Healy Petite pedal harp.  Although smaller than my harp. the string spacing is the same.  So I will be able to practice on my pieces while my baby is away.  I had to make one adjustment: Paul cut a piece of plywood for me to set the harp on and bring it up higher.  The pedals on this harp are lower to the floor than on mine, and I want to have it as close to mine as possible, so that the adjustment back to my harp is less difficult.

A harp mechanism removed (photo courtesy of Lyon & Healy)

Inside the mechanism (photo courtesy of Campbell's Harp Service)

Megan's Harp 

Note plywood square underneath, and ignore the wood stacked against the wall (wood for kitchen and dining room baseboards, too long to store anywhere else!)

Completed: BSN

It is official: I have graduated.  I am now a Bachelor of Science in Nursing.  It was a long and difficult process.  Many times I wanted to give up.  I am glad I stayed with it.  It feels very good to have done this!

Thoughts Before Christmas and Health

As we move into Christmas, I have had to reconcile myself to the fact that I will be working all of it.  This is a fact of life for a nurse, especially when in a new job (next year I will have a better chance of having at least some of Christmas off).  It is hard for me: no singing with the choir on Christmas Eve, no family dinner Christmas Day, watching Tyler open presents on Christmas morning in a blur after coming off a night shift.  Our dinner will be postponed to the weekend.

My health has been a challenge starting back at the beginning of fall.  I am working with a new doctor and am improving, but my energy is so sapped.  A simple walk to the pharmacy today in beautiful weather was tiring.  I feel extremely old, but I am only 56!  I must have faith that the interventions the doctor has prescribed for me will continue to improve my health.

So I am a little melancholy this season.  What I am telling myself is that there is hope for health improvement, and that I am performing an invaluable task this Christmas: caring for tiny preemies that I love, giving of myself and providing aid to the sick, as Christ asks of us.

"The care of the sick is to be placed above and before every other duty, as if indeed Christ were being directly served by waiting on them."

Up Late Studying

For work, I have to train and be tested for Neonatal Resuscitation.  There is a 300 page book to review, and online tests for each of nine chapters.  Next week I will go in and need to demonstrate the techniques, and then be evaluated.  I finished the book and tests tonight.  What a relief.  It was a very good review however, and some things have changed from 10 years ago when I previously worked in the NICU.

Easter Table

A long, but beautiful weekend: the Triduum, tons of choir music to sing each day of Holy Thursday, Good Friday, and the Saturday Vigil Mass, working a day shift Easter Sunday morning, and then coming home and cooking and baking with family for our meal.  I am grateful for Christ's sacrifice and Resurrection, for family, music, and good food.

Losing a Friend and a Fellow Nurse

I received very sad news the other day.  A friend of mine died unexpectedly.  She was only 57.  She leaves behind her husband and three children, all of whom are still so young, late teens and early 20's.  Her name was Norine.  I met her when we were both attending St. Francis Hospital School of Nursing.  We had a lot of laughs during school.  Later, we met up again when I first began homeschooling Robert and Kristin.  She was a wealth of information, gave me lots of ideas and some books.  After our kids grew up we still kept in touch, sometimes for "tea lady" events, and most recently when I called her for advice on a situation with my grandson in the fall, and then more recently when we just called to chat.  We had a good long talk that I am very grateful to have had.

I went to the Shen Yun dance performance today (stunningly beautiful performance).  The themes of many of the dances dealt with the divine and the struggles of life.  I found this to be great comfort.  In particular, one of the songs sung made me think of my grief at the loss of Norine.  Although this song comes from a different faith practice than mine, the sentiments are universal, and I was particularly touched by this:

Life's True Meaning
by D. F.

Human life is ever changing
Joy and happiness always go hand-in-hand with worry and grief
Happiness is paved with hardship
When wishes don't come true I often wonder
What is human life after all?
Dafa helped me to understand the truth
Most people come from various heavenly paradises
When the heavens faced disaster we came to earth
To wait for the Creator to purify our lives
I have no more sorrow and am no longer lost
Because I waited, and now the Creator,
King of the Fa (Great Way of the Universe), has arrived
Because I am on a god's path to home

Our Last Christmas Party as a Team

Earlier this month, the team of doctors, nurse practitioners, nurses, and medical assistants that I have worked with for the past five years all got together for a Christmas party.  It was a lot of fun, but very sad: our clinic is closing, and we are all scattered to the winds.  Some are going to a new pediatric clinic, others to other practices, some quitting medicine altogether.  I am going back to the NICU I worked at previously.  I brought my harp and played for everyone.  Katie's house is an old Victorian, which I love.  So the harp felt right at home!

(Note: the perspective on my friend's camera was a little off - the harp looks enormous!)

What I Have Been Up To Lately

There has been a lot going on in my life lately, which is why I have not posted in a while.

• School - I am finishing another class towards my BSN completion program. Three classes left to go, which will be available to take in summer. 
• Work - The clinic I work in will be closed in a month, very sad. Then my new job, back in the NICU, starts. 
• Family - The big news here is that Robert is having surgery, extensive inner ear surgery (Google Tympanomastoidectomy and Ossiculoplasty if you care to see details).  In fact, this is happening this very second - we are four hours in. Praying he will be out of surgery and restored to health soon!
• Home - Lots of winter indoor projects on the list.  Poor Paul!
• Health - I am dealing with chronic issues, medication changes and adjustments that are not pleasant.

But I am feeling blessed in spite of the challenges. 

Life, Shaken AND Stirred

There is peril in becoming too comfortable in one's life.  I had a vision of working my job in the pediatric clinic for the rest of my career, helping my children and grandson (and future grandchildren) as best as I could, gardening, harping, costuming, and so forth.  But life has a funny way of, every now and then, throwing this over.  What is the expression?  "We plan, God laughs".

In less than one month, the following has occurred:

• I received the news on Friday, September 13th that the public aid clinic I work in at the hospital is closing doors forever at the end of the year, meaning I was out of a job at that time.
• I interviewed for a job in the same hospital on my old unit, found out I got it, will start in January with orientation, then go to night shift once orientation is over.  (Option to put my name on list for day or PM shift as they become available, but I will be on the bottom of that list).  
• Paul, Julie, and I needed to meet with the principal at Tyler's school to discuss bullying by another child against Tyler.  After a nerve-wracking weekend, worrying about if the principal would take our concerns seriously and take action, we met Monday morning - it was a good meeting, and I feel hopeful the situation will be resolved.
• Other family concerns, prayers that resolution of that is truly going to happen.
• A minor car accident, my fault, a combination of being deep in thought regarding above, and a killer migraine.  No one hurt, minor damage to both vehicles.  
• And the above mentioned migraine, three days worth, killer pain, Imitrex only helping somewhat.  I haven't been able to keep food down until this morning.  In the worst of the pain, I did wonder, "Why must I have this on top of everything else?".

I really do long for serenity.  I have read all sorts of things online about coming through the storm due to needed change.  I just wonder why now?  It feels rather dark now.  I think once the pain from the migraine is completely gone, I will play my harp and see if music will soothe this troubled soul.

I am a Student Again!

Part of why I have been scarce lately is that, besides having been sick for so long this winter, I am also taking online courses to complete my BSN in nursing. My hospital is in partnership with a college that offers this. There was a discounted rate per credit hour and hospital tuition reimbursement. Completing my BSN was something I have thought about for a long time. So I jumped in! So far so good. I have completed one class, and am in the midst of another. I have to take Statistics next. Worrisome since math is not my strong suit. But I have a built in tutor here at home - Paul!

Resuscitating A Wooly Blankie

This is a tale about my grandson's blanket:

It is a well-loved blanket that he has been devoted to since he was a baby. We tried to replace it with a similar one, but he still prefers "Old Ooo-Ooo" (his name for the blanket - he used to make this ooo-ooo-ooo monkey noise while hugging it, so we began calling it Ooo-Ooo, which is now its rightful name!).

However, Ooo-Ooo was in a pitiful state, near death really. His (and Ooo-Ooo is a he, according to Tyler) backing had completely separated from the seam joining it to the soft wooly top. The edges were ravelled, so the backing was now smaller than the top. Julie had safety pinned it back together, which wasn't working too well and caused some holes to form. So as a nurse, I decided to do some emergency surgery and resuscitation to see if I could bring poor Ooo-Ooo back from the brink. After scrubbing in (a gentle washing of the two parts of him in the Delicate cycle), I began.

First, in Ooo-Ooo's first of several surgical procedures, I excised (trimed off) the ravelled edges and sutured (patched) the holes. I didn't want the patches to be on the outside, because Tyler loves the soft backing. So I patched from the back, and then zig-zagged the openings of the holes so they would no longer ravel, leaving as much of the backing intact as possible in spite of the odd shapes this produced:



Next, I surgically removed (cut with scissors) the old seam off, in order to make the top and bottom the same size and not be bulky at the edges:

I basted the top to the backing, then sewed white satin blanket binding to the edges to finish them off nicely (plus Julie, his mommy, loved the the satin edging on her blankets when she was his age).

Ooo-Ooo had a quick recovery from the trauma his surgeries inflicted. Here he is, resting on the couch, regaining his strength (and it is impossible in this house to recover from anything without a cat):

Of course, it wasn't long before he was pressed into service again with the blessing of his surgeon. No rest for the weary. But I think Ooo-Ooo is happy to have not been given up on. His owner is surely happy!

On Grandparents Raising Grandchildren

...or in our case, helping out as much as possible with our grandson who, with his mother (our eldest daughter), lives with us.

Here is how it all came about:
We sent our daughter off to college. She had always been the "rebellious one" of our children, distant, almost impossible to reason with at times. We got the news in early 2006 that she was pregnant. It was one of those moments that seem to stretch an eternity, when I felt God watching and waiting - what will you do? For Paul and I, the only right, loving, and moral possibility was for her to continue the pregnancy and to keep the baby with the family. We promised her that we would do everything possible to allow her to continue with her hopes and dreams, while helping to raise the baby.

Adjusting:
It is a very odd thing to raise a baby again after your youngest child becomes a teenager. Interestingly enough, I did have this thought in late 2005 that I would love to have a baby again, and even briefly thought about adopting. I am quite sure that this was God's way of preparing me for my new role: A grandmother helping to raise a grandchild. The adjustment has not been easy. I have been dealing with some health issues, and it was all just such a topsy-turvy change of lifestyle. I had different plans and dreams. It made for frustration and often depression, even feeling trapped. I had to remind myself long and often about the bigger picture and that I was working for a greater good.

Nowadays:
However, in spite of the difficulties, our grandson is a complete blessing. I am so grateful that we are managing to do what we set out to do - help raise Tyler and help Julie achieve her dreams along with it. Some things that have helped are having family therapy, getting needed rest, and eating properly. Finding a new doctor that is addressing my health issues has also brightened the horizons significantly. The most wonderful change has been in Julie. The once rebellious teen is turning into a lovely young woman, a good mother, a loving daughter, a sibling who is also a friend, and a grown up. Our life has altered quite a bit. I also am needing to reassess working. As it is now, I am doing a lot of baby care while Julie works part-time. But Paul and I discussed how since I am a Registered Nurse that I could earn more in the same amount of time Julie is working, allowing her to be with her son more. We have spent time in prayer, asking for God's guidance on this issue.

The Important Thing:
It can be done. It isn't easy, but God gives us the strength. When Julie was pregnant and considering adoption, I was so dismayed. I didn't want to lose this precious family member, however lovely any adoptive family could be. Even in my most depressed times, I have never regretted our decision to keep Tyler in our family and home.

He is a blessing. Thank you God.