Friday, June 28, 2013

Catching Up

Just a quick post to let you know I'm still hanging in there. 

Jason and Lily came back today, with Ron, who went to pick them up.  I'm glad they are here.

My RN comes 2X a week, the aide comes 3X a week, the chaplain was here with the Eucharist this afternoon.

Reece and the little girls know something is up, but they are all doing okay.  Everyone is giving me lots of love.

Kelly spent the entire day here with me.  She cleaned and we talked, she brought me food and just kept my spirits up.  She's been worrying about Teddy.  Mom can't have a pet at Sandi's, and truly, she does not need the responsibility.  My health aid has fallen in love with him, and I think Kelly will give him to her.

I'm trying to eat well, but Dr. O wants me to continue with the decadron, which raises my blood sugar to really high levels and makes me feel bad.  So he cut back on it a bit, and I continue with the insulin.  Things are a bit better tonight.  HGL makes my vision blurry, which is a real pain in the patoot.  

All in all, things are going okay.  I still have feeling in my upper body and can move myself around with my trapeze.  Legs and lower extremities are still paralyzed.  Brain is functioning, hands and arms are fine, breathing is okay--low and soft mostly.

Thank you for your continued thoughts and prayers.  They mean the world to me.  I am praying for all of you, and offering up my discomfort for your intentions.  Love you! 

Monday, June 24, 2013

Pics and Stuff

Our big family gathering.  They are all so beautiful.

Our wonderful musicians played for us.  Lyssa and Jason.

Kelly and I went to get our hair cut today, so I look different than in the family picture.  It feels so good to have it all cut off!  Picture tomorrow.

They  brought my trapeze and a wedge pillow for my bed this evening.  The trapeze is going to be so helpful to keep me moving to different positions easily.

Jason and his family left this evening.  He is taking them home, but plans to come back Wednesday or Thursday with Lily.  He just really wants to be here to help.

Kelly and Cyrise made me a fruit smoothie when we got home from the hair salon.  I was craving one, and Josh had  bought me lots of fresh fruit last night.  It was so good!

Kell and I had a puffy taco for dinner, and she went on home.  She made sure I took my decadron with food.  :o)  They take good care of me.

I'll be back soon.  Much love!

Sunday, June 23, 2013

One more beautiful family day.

Had another beautiful day with my family yesterday.  This time it was all of us here (Ron, Josh, Cyrise and their 4 littles, Jason and Kis and their four), Kelly and Mike, then Sandi and Mom, Johnnie and Mike, Jared (their son), Cole and Collin (Sandi's sons) Kori, Steve and their two little guys (Kori is Sandi's daughter).  A big, fantastic houseful.

They brought all kinds of food!  Some of the guys stopped at Costco and Target and got everything imaginable for a big cookout.  We had hamburgers, brats, hot dogs, all kinds of cheeses, baked beans and pickles, chips and drinks.  Dinner was delish!

It is so wonderful to see the now grown-up cousins together, and the little ones, too, of course.  Kelly and Jared have a family tradition of making no-bake chocolate oatmeal cookies whenever they are together, because we always did it when they were little.  They let Lily help them this time.  That was a privilege for her, because they usually allow no one else in the kitchen.  :o)  They (the cookies) were good.

The guys sat out on the patio at the back of pool, talking and talking.  They are all so handsome and strong.  Most of Great Gran's grandchildren are boys.  She has two granddaughters, Kelly and Kori, and they are both strong and beautiful, too.  Great Gran had her hair cut short, and wore cute clothes.  She is a little doll.  I liked just looking at her.

There was lots of swimming and playing going on.  Sandi trimmed my hair for me as we sat out back on the patio.  Steve took a big family picture (I'll see if it's in my iphoto so I can post it).  Oops, not there yet.  I'll try to get it downloaded later today.

We turned on the party lights on the patio at dusk, and Jason and Lys played for us, and Jason sang.  That was wonderful.  

We're all doing okay.  I haven't noticed much physical change.  I'm tired, but that's nothing new.  No new numbness or tingling anywhere, no breathing difficulties yet.

I ask for prayers for my family.  This is harder on them than it is on me.  Ron and I have been one for over 44 years, and I can barely imagine what this is doing to him.  I know the kids are worried about him.  They are all strong, but I can see that they are torn apart, too.  Please pray for strength and peace and comfort for all of them.  Thank you!

Goodbyes yesterday were difficult.  We live so far apart from extended family, and we don't know what will happen next, or when.  I feel so blessed that everyone was here while I'm still doing well.  

Thank you for reading, and thank you for your sweet thoughts and prayers.  Love you, dear ones!


Dear Adrienne,

I am sitting here on my bed smelling the beautiful scent of the Bunni candles you sent me.  Jason lit one for me right away, when Ron brought in the mail today.  It's heavenly.  Thank you so much!

I love the card and note you sent, too, and want you to know that I feel that same way about our friendship.  I think of you and Sarah when I see my pincushion, too.  Funny how a little joke and contest over a pincushion can start a bond between people.  It was fun.  :o)  And now I feel like I've known you always, even though we've never met.  You are very dear to me.

Thank you for including me in your rosary.  I will pray for you always.  Hugs to you and the music man.


To peachblossom

Hi Leslie,

Ron just brought in the mail, and I opened the card you sent.  I cannot easily express how much your words mean to me, what you said about friendship and what you said about grandparents and grandchildren.  I pray that my little grands will remember me the way you remember yours.

I've made a couple of little story telling videos for them, and included songs at the end that we sing at bedtime.  I hope they will help the kids to remember.  I know the older grands will remember, but the youngest are only 2 and barely 4, so not sure they will.  But the videos should help.

I love the lyrics to the song you sent.  Thank you for such a sweet and thoughtful letter.  I love knowing that people all over the country and the world are praying for me, and especially that your sweet little boys and you and John have me in your prayers.  Thank you!

With love,

Friday, June 21, 2013


It has been such a sweet, wonderful day.  Family filled this house with their love, laughter and joy.  Of course the usual family members (Josh, Cyrise and their four little ones) who live here were here, and so was my mom, my two sisters (Sandi and Johnnie), a brother-in-law (Mike), two big strong handsome nephews (Jared and Collin), our beautiful niece Kori, our precious daughter Kelly, and Jason and Kismette and their four children.

Josh carried me downstairs in the afternoon.  The women were all cleaning my house like crazy, and the guys were outside grilling kalbi, swimming with the kids and keeping them entertained.  It was almost like a party.  Well, it kind of was a party.

I got tons of hugs and kisses and love.  I sat on the couch and watched everything going on around me, feeling so blessed to have this big loving family.  Another nephew and his wife (Sandi's oldest son Cole) will be here tomorrow, and I'm looking forward to seeing him, too.

My home health aide came around 3 in the afternoon to help me with my shower.  The transfer bench works great and really makes me feel safer and more secure.  I was able to wash some of myself alone, without her help, because I don't have to hold on while sitting on it, like I did on the little shower stool.  Awesome.

Then I was all fresh and clean to be downstairs with family and have dinner later.  They all left to go back to Austin where Kori lives, but they'll all be back tomorrow.

After they left Josh said that it felt just like always with them; the same love and feeling of family has never disappeared, even though we live in different places and have different lives.  I've noticed that with our extended family, too.  Cousins I hadn't seen in years are just as dear and easy to be with now as they were when we were growing up.

Thank you Sandi, Johnnie, Kori, Kelly and Mom for cleaning my downstairs today.  I appreciate it so much.  Makes me feel much better!  Nobody cleans like our Croley women.  :o)  You are all wonderful.  Oh, and thank you Jared for vacuuming the kitchen vent.  And Cyrise for what you did before everyone arrived.  Love you!

Josh's children were enchanted by their Uncle Mike, Johnnie's husband.  I call him the child whisperer.  All of our kids have been crazy about him from the time they are born, or meet him.  He just has an easy, funny way with them that makes them love him.  So Aubrey was looking at him, and she said to him, "You have a good face."  :o)  Isn't that the cutest?  He said, "Does that mean you think I'm cute?"  And she said, "Yes."

Jacob enjoyed meeting all the guys and swimming with them.  He said someone picked him up from behind and threw him into the water.  I asked him who it was, and he said, "That big white guy."  I laughed so hard.  He meant his cousin, Collin.

Now I am eating a strawberry sundae that Jason and Kis got for me.  The perfect ending to a very sweet day.

Thursday, June 20, 2013

Some Thursday Chatter

So much going on.  

We didn't go driving yesterday, but hope to go within the next couple of days.  But Kelly was here all afternoon, which was very nice.

Jason and Lyssa played their guitar and viola for us.  I've always loved to hear Jason sing, and he sang several songs for us yesterday as he played his guitar.  He sang Vince Gill's Pocket Full of Gold (my dad's favorite), Knocking on Heaven's Door (Dylan) and Down In A Hole (Alice in Chains).  He should put his songs on You Tube.  He has a beautiful voice.  We sat downstairs most of the day.

The social worker came out in the late afternoon.  She was very nice, but extremely talkative.  Kelly said maybe she gleaned some information from us while we all chatted.  I don't know.  :o)  I was awfully tired by the time she left.  She's getting us a handicapped tag for the car.

My sister Johnnie is coming tomorrow, and maybe her son is coming with her.  I'm looking forward to seeing them.

Sandi and Mom are coming back this weekend, also.  And maybe one of Sandi's sons.  I've certainly caused an uproar, haven't I?

The health aide will be out in the morning.  Ron has transformed the bathroom where the shower is by taking off the door (now the wheelchair can go in there).  He also removed the glass shower doors and put in the transfer bench which arrived last night.  That should make showering so much easier for me.

I don't hesitate to let my sweet family know when I'm becoming overwhelmed.  Sometimes it gets to be a little too hectic in my room, with grands coming and going, talking, fussing, whining or arguing, and adults doing one thing or another.  All I have to say is, "Time to go out now," and little ones are ushered out, along with the big ones, the door is shut and I have some peace and quiet.  They are so sweet.

Happy Thursday, y'all.

Wednesday, June 19, 2013

Hospice and other stuff.

I have been on hospice for a few days now, and it is nice to have someone to help Ron with my care, particularly bathing.  

An RN comes in twice a week to check my vitals and for any questions or concerns we may have.  The first nurse came out for two days in a row, but now there is another set of workers.

An aide comes 3X a week, to help with my bath.  She's so sweet.  She likes to dry my hair and style it.  My hair came back as thick as ever, and she enjoys playing with it.  :o)  She was here this morning.

We haven't received the equipment they plan to bring out yet.  They're bringing a transfer bench, which should help immensely with moving from my wheelchair to over the bathtub.  They mentioned bringing a trapeze so that I can pull myself around on the bed.  I have good upper body strength right now.  But I think they need a hospital bed for that.  I was hoping we wouldn't have to have one of those until later.

Right now Ron and our two strong sons move me around.  Josh and Jason can pick me up easily, but Ron has trouble lifting me and I'm terrified that he's going to hurt his back.  Josh is so strong that he can carry me up and down the stairs like I'm a child.

The simplest, everyday activities, like going to the bathroom, are the hardest things to accomplish.  It's a bit bizarre.  I wake up in the morning and start to swing my legs out of bed and walk to the bathroom.  Then I remember.  Someone else has to swing my legs over and lift me onto a bedside commode (wheelchair won't fit through the 2nd bathroom door, where toilet is).  I have to have  help to pull down my pants.  Then help to get my pants back up and into the wheelchair or bed.  That's the awful part.  I'm having to learn not to be so independent, and it's very hard for me.  I've always been in charge, at least of myself.  

I'm in my room a lot, but downstairs for most of the afternoon to be with everyone.  Today Kelly is coming to take me for a drive to the Hill Country, just to get me out, and because I love the Hill Country.  I'm looking forward to that.  I wonder if there are any Fredericksburg peaches left?

One of my boys came over to see me yesterday.  When the kids were growing up, they all had friends that we all loved, and Chris is one of Josh's high school friends.  The first time I ever saw him he was sitting in a little orange sports car in our driveway, and had a big sweet smile on his face.  I said, "Well, aren't you the cutest thing?" and I've loved him ever since.

He brought me a book about using nutrition to cure cancer, called The Complete Cancer Cleanse by Cherie Calbom, MS (the Juice Lady), John Calbom, M.A, and Michael Mahaffey, P. C.  Wasn't that sweet?  I was reading it last night, but it says the juice detox program makes you very sick for about 5 days a few days after you start it, so I don't think it will work for me.  But I will definitely use the suggestions for food from the book.  It's all good for the immune system.

Have a great Wednesday!

Tuesday, June 18, 2013


Today, the most wonderful priest came to our house.  I had met him once, as he does the Traditional Latin Mass at our church now.  But I've missed Mass so much over the past couple of years, I didn't really know him. 

I called to see if he would come to see me for Confession, Communion and Anointing of the Sick.  He did all that and so much more, and he used the Traditional liturgy that I love.  We talked and talked.  He blessed my room with holy water.  He invited the whole family in to see the anointing, and all of us thought he was the perfect priest for me at this time.  He is awesome!  My sins are forgiven, I received Christ and the anointing, and now I feel awesome!  I love love love being Catholic. 

Thank you, My Lord and My God, for the blessings you have given me, and please bless Father Moses of Jesus now and always.  Amen

Saturday, June 15, 2013

A hard post to write.

St. Peregrine, Patron Saint of Cancer Patients
I hardly know where to start.

I went to the BMT on Thursday for my IVIG appointment.  I took the reports from the physical therapist, saying how quickly I had deteriorated in only a week.  I went from driving myself to the clinic and walking in with my walker to barely dragging myself in with Ron's help the next week.  That day we got a wheelchair.  Now my body from the ribcage down is paralyzed.

When the doctor saw me and read the reports, he immediately put me in the hospital and scheduled an MRI.  They did the MRI late that night.  The next day when the expert read the MRI, he said the cancer has come back and involves nearly my whole spine.  We never saw any sign of it in my spinal fluid, but it's in the spinal cord.

Mantle cell lymphoma is a very aggressive, sneaky kind of cancer. The first two times I got it, the progression was very fast.  And Dr. O said that it will probably be very fast again.  He said it is moving up my spine.  Right now the lumbar region is affected, which is why I can't walk and have bladder and bowel problems.  As it travels up, it will involve my arm movement, then my lungs, and finally my brain.  

He said that I could have brain and spinal cord radiation, or very strong chemo.  There are not many chemos that will go into the spinal canal.  He said that neither of the choices will cure the lymphoma, that I'd have to stay in the hospital and could very well die there.  He said that all either procedure would really do was to buy me a little more time.

I told him that I wanted to go home.  I want to spend my last days with my family.  The doctor set me up with hospice.  We don't know how long I will live.  He said it could be days, weeks, possibly months, and that he even had some patients who had been on hospice for more than a year.  

Given the aggressive nature of this cancer, I don't expect it to be months or a year.  Right now I feel okay except for the paralysis, and that's not really painful, just uncomfortable.  

My sister, Sandi, has come to get Mom and will take over her care now.  That is huge burden lifted from our shoulders, and I am so thankful that she is able to do this.  Please pray for Mom as change is not easy for her.  And for Sandi as she makes adjustments to her busy life.  

I hoped for a longer time, but I am dealing with it okay,  The hardest part, of course, is how this hurts my family.  I've fought this cancer for over 3 years, and this is not unexpected, so I hope we get through it without too much trauma.  As my sister said today, we've had time to love one another and say good-bye.  It's not like a horrible accident where your loved one is suddenly killed and you have no chance to hold them one more time and tell them what they mean to you.  So I'm grateful for the time we'll have for that.

Praying for a miracle, but putting it all in God's hands.

Thank you for being here these past 5+ years.  It's been fun sharing my life with you and finding new friends on the internet.  I'll continue to blog when I can.  I love all of you, dear readers.

Friday, June 7, 2013

The latest in my cauda equina saga.

My oncologist had not gotten back to me about the referral to a neurologist.  So I called my radiation oncologist (who referred me to physical therapy), but her nurse said that the referral would have to come from Dr. O.  So I called the BMT clinic again, and Carla had just come from a meeting with him.  She said that he had made the referral, but got a call back from the neurologist saying that he couldn't do anything to help me.  He said I need to go to the pain management clinic.  :o(  She told me to call them on Monday to make the appointment so they would have a day or so to review my history.  

I had some hope that a neurologist would be able to tell me something I could do to improve the paralysis, or at least how to live with it.  But I also knew that it was very possible that nothing could be done.  

I'll have to call my PT to let  him know that I won't be seeing a neurologist.  Maybe I can get pics of my last MRI so that he can see the mess we're dealing with (the tangled, curled up nerves).  I'll also take the reports from the PT to Dr. O next week.  I'm scheduled for IVIG at the BMT clinic on Thursday.  

We had to go to Mom's late last night.  She had packed again, and called wanting to know where everyone was.  I think she thought we were going to move her.  We got everything unpacked again.  Ron went over today and said that she had not repacked, but was still in her night clothes at 2 in the afternoon.

I'm trying to stay upbeat, but it's not easy.

Thursday, June 6, 2013

What's Going On Around Here

Well, now I'm in a wheelchair.  Ron went and got it for me yesterday, after we went to the physical therapist.  The therapist is one I saw years ago for my frozen shoulder.  I like him a lot, and have faith in him.  He thinks he can help me, but said he wants me to see a neurologist because of the rapid decline in the use of my legs.  They've gotten much worse since I was there last week, and he printed out reports from both visits to show the neurologist.  

Aubrey thinks my wheelchair is pretty cool.  Wish I felt the same.  I am grateful to have a way to get around, though.  Last night I dreamed that I was walking and walking, down a country road.  

The kids have half a day of school tomorrow, then they're out for the summer.  I ordered some books to help Reece with reading and math before he goes back in the fall.  We will work on it every day this summer.

Ron and Josh have been going to Mom's for me the past week.  She called me earlier, saying that she is packing to move back to Wichita.  It's very frustrating because she isn't moving, but keeps packing things that then have to be unpacked and put away again.  I think this is the sixth or seventh time she has thought she is moving.  Last time she thought she was moving back to her old apartment.  Josh is on his way over there now.

The kids were so surprised when they came home today, because Papa moved the couch out of our bedroom to make more room in here.  Now Reece is sitting in my wheelchair watching Ben 10.  He looks so adorable.

Life.  You never know what will happen next.

Tuesday, June 4, 2013

Bits and Pieces

Dad in his twenties.
Today, June 4th, is my dad's birthday.  He would be 93 years old if he were still living.  It's been 21 years since his death, and I still miss him.

Aubrey has spent the past hour in here with me.  We played a Garfield game on the computer, then she practiced typing her name and Reece's.  We had a cinnamon roll which she got all over her cute face.  Then she took my cup downstairs and came back with a little more coffee for me.  She said she poured it herself, and put cream in it!  (It's not hot).

Yesterday was pajama and movie day at school, and Reece wore his annoying orange pajamas.  Today is game day.  The kids could take games to play with their classmates.  Tomorrow is water day.  Reece will wear his swimsuit (and tee shirt and shoes, of course) and they will play in the water, blow bubbles, paint themselves and be sprayed off, etc. etc.  I know he will have fun.

I think we may rent a wheelchair so that I can be more mobile.  This is a real pain in the patoot.  I finally got some straight answers about my insurance and referral, so that I can start the PT.  My right leg is so "dead" now that I don't know if they'll be able to help me.

That's about it.  Have a good Tuesday.

Sunday, June 2, 2013

Sunday With Kelly

Our beautiful Kelly
My legs are getting worse by the hour.  I can still stand on my left leg, but the right one is totally useless.  It's kind of scary.  I don't know what we're going to do.  I live in a two story house.  Ron is taking off next week to do the driving I normally do.  Thank goodness the kids only have one more week of school.

Kelly came over today to take me to lunch and for a drive.  I had to go downstairs on my bottom so I wouldn't fall (and back up the same way, which was a bit more difficult).  I can still walk with the walker, very slowly and carefully.

I went to Gruene with Kelly anyway.  She took me to lunch at The River House, a sweet tea room that has wonderful food and excellent service.  We ate outside on a shady patio.  

I had quiche, which came with a yummy muffin and fresh fruit.  Kelly had a delicious looking rueben panini with fruit and homemade house crackers.  We both had peach iced tea.  

While we were eating, a well-fed black cat came and sat down and looked at me.  I gave him some cheese, and Kel gave him some of her sandwich.  He was known at the tea room and is named Gipper.  What is a gipper, anyway?

We went driving, and talked and talked.  I absolutely love being with my daughter.  She is so precious.  So in spite of being a cripple all of a sudden, it was a nice day.

When we got back, the kids were excited to see Aunt Kelly, and Reece wanted to show her the Wii.  She brought all of them pool toys for their birthdays.  They love her.  

Ron had finished the gate for the deck stairs and had installed it.  It's tall, and I'm hoping the kids won't try to climb it.  Aubrey has already said that she can get in, but Papa told her he better not catch her even trying.

Hope your weekend was nice.  Prayers again for Oklahoma! 

Saturday, June 1, 2013


Not having a very good weekend.  My cauda equina syndrome is wreaking havoc on my ability to walk.  I can hardly get around, even with the walker.  I'm doing the exercises the physical therapist gave me, but as simple as they are, it's difficult.

I went to the school to watch the dance festival yesterday morning, and had to walk kind of far.  My doctor says it is important for me to keep moving, but maybe I overdid it.  I spoke to him by phone yesterday, and he's going to refer me to a neurologist.

The dance festival was fun, though.  Each class did their own dance, and then the teachers performed a dance.  Reece's class was all dressed in black shirts with "gold" chains and danced to MC Hammer's Can't Touch This.  It was cute.  I stayed to watch all the classes and enjoyed it very much.  Some of those kids have really got the moves!   I didn't get any pictures because I left my purse in the van so I wouldn't have to carry anything as I walked.  :o(

Josh went to Gran's for me yesterday, and Ron and Reece went today.  They said she is doing fine.  

Today Ron has been busy building a gate to put at the bottom of the stairs that go up to the deck.  We hope it will keep the little girls from picking my tomatoes that are on the steps.  And keep them off the deck.  They love to go up there, but it's not safe, especially for Gina, who is not always stable on her feet.  I'm afraid they are going to see the gate as a challenge, though.  I told Kelly we may have to put spikes and barbed wire at the top to keep them out.  :o)

Reece is in here wanting to use the computer.  Have a good weekend.