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.

35 comments:

Cay Gibson said...

I can only imagine the courage it took to write this post. Holding you tight in my thoughts and prayers, Kalona.

Adrienne said...

Tears...

Joe Kidd said...

My sons and I will pray for you and your family. God Bless!

Kelly said...

Mom. I love you so much.

Curmudgeon said...

Came here from Adrienne's Corner. My heart is with you and prayers for your Mom and your loving family.

May God place His Hand upon your shoulder and give you comfort and peace.

I regret not knowing of your blog before today.

catholicofthule said...

Prayers and hugs!!!!

catholic rose said...

You and your family are in our prayers. May God bless you.

Anonymous said...

Dear sweet Irish, The more I thought that it might have come back, the harder I prayed the rosary for you. God know's best. Just know how deeply you and your family have touch me. The life lessons that I have learned from you. With all my love Karen/fauxpetals

Le@h said...

I don't know what to say. :-( Praying for you and your family. Leah/Lowdenclear xxx

Sarah Oldham said...

My sweet friend. You fight so valiantly with Christ at your side and Mother Mary who upholds you . . . may you rest in them sweetly, too. I wish I could be there, in person, to give you my aloha. I know I don't blog any more, but I still read them (and I'm terrible about commenting and ashamed that only now I am). You are a champion in my eyes. I pray to be a sweet granny one day so I can cherish the grands as you have so lovingly . . . Your heart is beautiful. I do not know what else to say other than you have my love and prayers . . . always.

Annie said...

Dear Kalona,

You don't know me as this is my first visit to your blog. My friend, Biene, found your post (perhaps she visits here? I haven't asked her yet). In any event, she wrote to me and sent your link. She asked that I add your name to the prayer list on the sidebar of my blog (Scenes from a Slowmoving Train). I gladly do this and pray that you find comfort and healing or a return to Home as God wills it for you and your loved ones.

The Hospice Prayer -

O’ gracious God, Giver of all hope
and comfort, You have called us here to be the companions of those who are making their way home. As you draw them into your healing light, touch us also. Transform our
knowledge into vision, our skill into comfort, our pain into compassion, and our grief into love; That those who go before us may leave in dignity and peace, and that we may grow in gratitude.
Amen.

Maggie@MaggiesNotebook said...

I also arrived from Adrienne's. You have my prayers for peace and comfort and miraculous intervention, along with strength for you family who obviously loves you so.

Genny Conley said...

Please know that your DCF friends are praying for you and your family. We have been blessed to know you and you have touched us over the years with your quiet resolve to get through trials keeping your faith in front of you. This is painful to write, we love you so much. Pray for us!

Siggy

JoAnnC. said...

Praying through the tears. I'm so sorry. May our merciful Lord grant you peace.

Ann Margaret Lewis said...

Kalona - your words over the years have been an inspiration, a consolation and a source of gentle wisdom. Thank you for ....well...being you. Pray for us always, and we'll be praying for you.
--Ann
(Sparky)

Ann Margaret Lewis said...

Kalona - your words over the years have been an inspiration, a consolation and a source of gentle wisdom. Thank you for ....well...being you. Pray for us always, and we'll be praying for you.
--Ann
(Sparky)

patrice772 said...

This I do know, Jesus died not only to save you but to free you from illness. He will make you whole and healthy. I pray it is here on earth. Pain free is my prayer-thank you for sharing you...the most precious gift you can give!

Kalona said...

I can't begin to express how all of your comments have touched my heart. Thank you so much for your thoughts, your prayers and your outpouring of love. I will pray and offer up my sufferings for all of you, also. God bless you all.

Karen Kup said...

Dear sweet Sharin, my fruend. Much love, many prayers. Id love to come see you but understand you probably want to spend all your precuous tume with family.

faithfulservant said...

may our Loving Lord be with you and your family now and in the future... will offer my Adoration Hour and rosary for your intentions tomorrow and the rosary at the assisted living home on friday

Marti said...

Kalona,

I will continue to remember you in my prayers. Please remember me and my family in yours. You will be so missed.

Marti (M Word )

Johnnie Enders said...

Sweet Sister,
The past few days have been so hard. I have prayed so many times that my cells would prolong your life for more time than this. You are an inspiration for our family. Who knew my tiny sister could be such a fighter. I am so happy that I was able to be with you when you had your transplant and that I was the "perfect match". You have been my sister, my roomate and so much more. I have the best memories! We will all be together again! I LOVE YOU TO THE MOON AND BACK! XO

Kalona said...

You all make me "cry for happy." So much love. I love you, too.

Steve Wydman said...

What an awesome example of strength and humility you have shown me......and we haven't had a huge amount of interaction, but I am humbled by your walk. You are in my rotation of prayers. Thank you for being kind to me.

Le@h said...

We're all praying for you over on DCF, that the remainder of your time, however long or short, will be fruitful, and that Our Lord will prepare you to meet Him face to face. As Marti said, you will be so missed. Please remember us all in His Kingdom.

Leah (again :-) )

jessica said...

Oh Kalona, my sweet friend. My heart is breaking right now. My thoughts and prayers have been with you and will continue to be with you. You have been such an inspiration and a blessing to me over the past few years.

Thank you for all the wisdom you’ve shared, thank you for opening your life for us to read about here on your blog. Even though we’ve never met in person I think of you as a dear friend. And I know that we will meet some day!

May Our Lady wrap you in Her Mantle of peace and love, and carry you to the throne of Her Son. I will offer up my next Holy Hour for you. I love you.

~jessica~ (formerly the Flying Dutch Girl from DCF)

Mama Brightowl said...

Oh dear. I had no idea you were fighting this and thanks to Rick (from dcf) for sending me this link, I do now.

I am so sorry you are going through this. I am so sorry that I have not really stayed in touch with you since we moved from Texas. I really enjoyed your friendship and all the times we were able to get together. You are such a strong, faithful, and knowledgeable Catholic with a sweet and gentle spirit. I really look up to. Anyone who has known you, is a part of your family and your life, is truly blessed.

I will continue to read your blog so I can stay updated on your condition.

You and your family will be in my daily prayers.

Love and hugs,
Tanya Sites

Anonymous said...

Sharon, Sister, Friend - the memories are flooding my mind - little girl times - Terri Lee dolls, Oklahoma trips, watermelon days with our cousins, "Tuffy", Daddy times, Making fudge with Mom & Dad, Christmas mornings, Kings X, Our butterfly dresses, laying in the clover, warm summer nights in Kansas, Santa in downtown Wichita, Summer trips to Oklahoma, our brave trip to the cemetery, at night, with our cousins ... bus rides, wading in the creek, summer music lessons at East High, ice cream at Armstrongs & hot fudge hinky-dinks, Pizza Hut trips with Daddy, "Dilly Bars". Joyland Amusement Park, roller coaster rides, Kiddieland, McArthur, Jardine, Violin and Clarinet duets for Daddy, "dragging Douglas", and so many other memories-Where did the time go??? You are my hero in so many ways. Forever sisters .. I love you so much! You have fought the best fight but I know it's time for you to rest in His arms. I'll be right here .. holding you in my prayers. It's not goodbye.

Sending you all my love, Sandi

Anonymous said...

You are indeed a brave lady. My hope is that you and your family find strength in God's love. You will be in my prayers.

Luukas - Lukaszek said...

Prayers... L, Dorota.

Luukas - Lukaszek said...

Prayers... L, Dorota

Anonymous said...

I will ask my Aunt and her community to pray for you and your family. I will have a Mass said.

My Aunt is a nun. She is 97. Her prayers work!

Kalona said...

Thank you again, dear blog friends and loving family. Your prayers and comments are helping hold me together. Much love.

Jennifer Mulkey said...

I've been off line alot lately, due to helping my brother through his third bout with cancer. I've just read this post, and am sad to hear this news. You have been so brave through this all, much more so than I could have ever been. You are an inspiration to me. I continue to keep you in my prayers, and of course your Mom and entire family also. I pray Our Lady will give you comfort, and ease. Thank you so much for all the support you've given me while going through so much yourself. I wish I were closer, but you know that the hugs are there, just not physical. God Bless your entire family. Sending you as much love as I possibly can from so far away. Me (Gracie)

ViralSpace said...

Hey Aunt Sharon, all I can say after reading this is...I LOVE YOU SO MUCH, and this past weekend when I saw you, I saw my beautiful aunt smiling like you have for all 33 years of my life...This cancer has and cannot take your strong faith or joy away from you. You amazed me when I saw you, and I saw in you a fight to live on every moment as if you know God is with you always...That touched my life forever. Thank you. I will see you soon, as I hope to be free to come visit this coming weekend if not sooner. You're beautiful, and I'll always carry you in my heart.
Sending you All my love,

Your Nephew,
Collin <3