Tuesday, January 27, 2015

Real strength and true love...

Well, it has been a long, hard road but Praise God, my sister is leukemia-free and her donor cells are 100% grafted.  She has been released to go back to her home and will now be allowed to drive herself to the clinic and no longer needs a full time caregiver.   This is of course what we have been striving for but I have to admit I am hesitant on several levels.   I’m going to worry; I’m going to miss her and I’m going to have to fully face the loss of my children without a major distraction to help bring me back from the darkness.

Caring for her and getting her back and forth to the clinic have kept me out of the bottom of the closet.  I can only hope and pray that once she is home, I will stay out. 

I have found myself at times feeling sorry for myself at having to sit in the clinic where I could not cry and scream and sob in the corner when I so desperately wanted to but instead had to sit there and fight back tears and try to pay attention when I could not even think.  I did not feel that I was up to the job but God knew He had to provide a distraction big enough to keep me from going over the edge to a place from which - I may not return.  Giving in to all of it at once would have been devastating and by having to stay “present” I found small snippets of time in which to give in to the grief and fall into that deep hole but all the while knowing because I had a responsibility to her – I had to crawl back out albeit sometimes kicking and screaming.

My sister is the true picture of real strength. She amazes me the way she has handled all that she has had on her. Because the same monsters that for two cents would take me down also haunt her. She lost her family members too.  And she has struggled with the same mystery surrounding this and the same trauma that I’ve had, and she has done so on top of leukemia treatment and a stem cell transplant and she has had to bear the sadness and grief of being with me everyday and watching me cry and grieve for my children.   

I don’t know how she has done it.  She has faced some of the scariest stuff a person could ever face physically, mentally and emotionally.  Hospitalizations, two different types of catheters placed next to her heart for administering chemo, blood, platelets, various medication and fluids.  She was taking about eighteen different scary life-threatening medications, four different types of chemotherapy in mega-doses (nuclear waste in a bag I’m sure.)  It made me real comfortable when the nurses put on gloves and masks and sometimes "lead" aprons to administer it and then casually ran it straight into her veins...  She has had full body irradiation and all along the way being told about all the scary possible side effects of all this treatment: cataracts, blindness, other cancers, liver failure, kidney failure, heart failure, neuropathy, neurological issues, irreversible & fatal lung damage and much, much more.  And best case scenario --the least of what she would deal with would be extreme nausea, vomiting, dizziness, the loss of her hair, shakiness, weakness, rashes, mouth sores, loss of appetite, diarrhea, stomach cramps and a raging case of hemorrhoids!  And she had all of the above.

She immediately lost her independence.   She could not touch or be around her beloved pets.  She could not get the spiritual support she so desperately needed because she was not allowed to go to church.  She could not even enjoy the simple pleasures of going out to eat.  She couldn’t celebrate Christmas with her family or even visit with her grandchildren and she has had to leave her home of twenty years for almost eight months now and  be a captive audience to my grief.

She has faced Graft vs. Host Disease of the skin (also another of their best-case scenario issues) which has caused an itchy red skin rash all over her body, then she's had to be exposed to radiation with UVA light treatments for it which have burned her and caused her face and lips to peel while exposing her to melanoma and basal cell carcinoma.  She has had three different potentially deadly viruses, two life-threatening seizures, an emergency admission to the hospital when her platelets would not come up making her at high risk of a stroke or internal bleeding.  She has been sent from doctor to doctor to doctor.  And had to endure multiple extremely painful bone marrow biopsies with very little anesthesia, along with many other torturous tests and treatments.  And from day one –she lost all say when it came to her lifestyle or her body.  When they called with the diagnosis they gave her about 12-hours to get to the hospital and they told her, “Be there at 8:00am and be prepared to stay six weeks.”  Six weeks!

Many times the tears she thought were grief were an overwhelming  combination of the loss of my children and watching all she was facing daily along with the constant fear of losing her.

Two weeks ago as she sat with me over lunch while I was fighting back tears as I mentioned something about my children again and she suddenly blurted out: “I’m glad I got leukemia.” To which I responded: “You are crazy!”  She said, “No, really, I mean it.  I’m glad.  It really hasn’t been all that bad and if not for the leukemia, I would not have been able to be here with you every day through this when you needed me.”  

Now "that" is true love beyond measure.  That is my sister.

I thank God for her and all the great people I still have in my life.    

No comments:

Post a Comment