Being sick is very trying.
Being sick with cancer, even more so.....
BUT!!!!!!!!!!!! Being sick and having hallucinattions in the hospital .....just too much for
this girl to bear.
radiation tx will start either tomorrow or Friday. Thank you for your prayers!
Dawn.
March is National Kidney Month AND Multiple Myeloma Month.........
http://www.kidney.org/kidneydisease/kidneymonth/
http://myeloma.org/ArticlePage.action?articleId=44
This morning I also learned that severe back pain can be a sign of infection of the spine.
God bless us everyone!
Rash; bruising; cramping - feet, legs, hands (the hands are the worst); bleeding; fatigue; constipation; bloating - i don't look like me; neither do my ankles. (lol)
These are just the effects from taking my meds. go figuah!
like the one that came today. We went out for lunch. I wonder if she'll ever truly understand how much I enjoy her company, conversation, kindness.
Father, thank you for friends who show Your love through their visits.
Angela recently got her driver learning permit. What an amazing blessing this is for me! Often, I'm just too tired to drive, so this helps us both tremendously. Like her sisters, she's chosen to be an organ donor. In the past couple of weeks, she has asked me if it's okay if she donates blood when she turns 17. (she HATES the sight, thought of blood)
Last week Jhinel informed me that she has signed up for the National Bone Marrow Registry.
I really like these "kids."
Thank you, Father, for the gift of children.
This past Sunday after church and one of those "God-incidence" lessons again, Jhinel drove us down to Lake Worth. We visited with Jennifer (my eldest), her man, Jason, and my two BEAUTIFUL granddaughters, Alana Lynn (5) and Gianna (7 mos). We had a lovely visit and even went downtown for ice-cream and some window shopping. I didn't even care that I had that ridiculous looking walker with me (please excuse my see a lovely stool that would be "perfect" for Angie's vanity in the window of a consignment shop. It was out of my planned budget, but so pretty, that I would have paid full price if I had it. Even after negotiating, it was still "out of my budget" As we were walking out, a tad disappointed but with the belief that we could find one at the price that I wanted, the clerk offered to call the owner. AND that's how Angela got her sweet stool for $30.00. Sometimes you must be willing to walk away, and risk losing what you "want".
So, at some point, Alana realized that Jhinel and Angela and I were going to "nana and papa's" for dinner. She begged to come along, "please gramma can I go to papa's with you? can I pleeeezzzzz?" I was so glad that she remembered them, and that she was so excited to visit. (I'm told that both Dad and Bentley survived, but I haven't talked to either one since Sunday. hmmmmmmmm...) Later Alana would beg again, to come home with me. This one didn't work out so well. Nonetheless.....
It was such a beautiful day.
(Blessed and grateful)
I was re-reading some of my blog entries recently last week. I was especially struck by the ones when Jhinel was accepted to college and leaving home. How long ago that seems, especially given the changes in my girl. In some ways she's still a "momma's girl"; in that she is often mindful and helpful; If she's in town, she accompanies me to church just because she knows that it brings me such joy, and yet, she is definitely a woman coming into her own, who makes decisions about life and has opinions about the world. I love spending time with her; "lunch" and conversation.
She's a lovely "big sister" whether Angie understands this yet or not. Though recently Ang did comment after a visit, that she (self) is "spoiled." (She's not, but I'm glad that she recognizes that her sister enjoys hanging out with her and taking her out.)
I'm His favorite, I tell ya!
I intentionally do not have a Caring Bridge blog at this time (several of my friends have both. - one blog is quite enough for me for now.) My reasoning may be flawed; but in my mind, the CB blogs tend to focus on the medical issue of the author, whereas I tend to think of my cancer as just one more piece of my story. But that means that sometimes you may be "bothered" here with information, stats, and updates relating to multiple myeloma and kidney dialysis. I continue to think of myself as "living with", even as I witness the debilitating effects of my disease/s.
Living it one day at a time and grateful for each!
This is the one and only "official" update on the details of my absence from blogging. The one time in my life that it actually hurt too much to write. This was written in December, 2011, I am posting March 2012:
My faith has been challenged beyond what I thought
possible. Last year I celebrated Christmas (2010) in the hospital. In fact, I
spent six weeks and then another two. I haven't been as active on this
web site since and here's why.
Beginning in late June of 2010 and for almost six months, I'd sought relief for excruciating pains (on the proverbial 1 to 10 scale, a 13),accompanied by horrendous fatigue and other symptoms. Two hospitals, a walk-in
emergency clinic, and two doctors told me that they could find nothing
wrong. Actually the last doctor stated that I was depressed and had
scoliosis. He ordered an MRI and gave me pain pills and an
antidepressant. Both were incorrect diagnosis. When the severe rash
started, he gave me a referral for a dermatologist. By this time I'd
left my job
and my 16 year-old daughter and I had moved in with my mother. Even
though the doctors couldn't find a cause, my health was rapidly
declining. I could barely walk and my breathing had become quite
labored, For over a month, I'd had no appetite, when I forced myself to eat it
wouldn't stay down......
On December 2nd, I drove myself to the hospital. And was admitted.
Within minutes ACCURATE diagnosis were being made. That night, I was
diagnosed with severe anemia and was advised that my kidneys had shut
down. The next day, I was informed of the real culprit - multiple
myeloma. A rare and incurable cancer of the blood plasma. The irony
that I continue to struggle with today is that a simple blood test is the
diagnostic tool, and had my diagnosis come sooner, I would not have lost
use of my kidneys. Obviously, for the last year we have been
aggressively addressing this cancer and have encountered many joys and
disappointments along the way. Hemodialysis, is one example, it is an exhausting treatment which I get at a dialysis center three times per week. My life revolves around my treatment schedule. As much of a pain that it is, it is one of the reasons that I continue to be alive.
Shortly after my discharge from the hospital, we learned that my cousin's son had been
diagnosed with a lymphoma. His battle with this cancer was relatively
brief, and at 36, Mikey passed. My heart has been broken with sadness
for his beautiful momma.
What I thought was THE worst came at the end of August, I was driving home from Tallahassee, FL. I had taken my girl and her new papasan chair back to college. Shortly before arriving "home" I received a phone
call, to call my girl back as soon as I reached my destination. It didn't make a lot
of sense but ..... what the heck! When I pulled into the driveway
and called her back, I understood immediately why she had been so
stubborn about not telling me as I was driving. My kid sister had gone
away for the weekend with her husband. She was now in the hospital in a
coma. They didn't know how long she would live. NOW the depression
would begin.
A day or so later, a
friend came and picked me up and took me to Ft. Myers to be close to my
beautiful sister. At some point it was decided to take her off life
support. It was a miracle that she continued to live! She was eventually transferred to a private hospital closer
to her home, and between her husband and our mom someone was with her
but for a couple of hours at night. Then came the worst news yet. Momma had come home for a couple of
days when the phone call came........My brother-in-law was dead. Our beloved
Chad...just didn't have the strength physically and emotionally to continue. I believe that he died with a broken heart.
As difficult as this has been for me personally, It has been so much more for their parents and children; to my own 16-year-old daughter, Chad was "like a father." She spent many weekends or vacation days
"hanging" out with their family, she has struggled so much, but
thankfully is finding some relief in therapy.
When I quit smoking in September 2009, I was the happy quitter! I HAD PLANS for my new,
healthy life!!!! I started working out and was walking 5K's. I planned
on running a 5K for my 51st birthday.....ha! "MY" plans. Today, I
walk with a walker or a cane. I must "rest" much too often for my liking.
Today, my prayers are simple.....healing for
Holly and for us ALL and for God to have his will in my life, even as I
struggle with my own purpose in his plan. I pray for strength for my
momma who lives near the neurological center to be with my kid sister.
So, that's the nutshell version. I'm happy to entertain questions.
If the thought should cross your mind, all prayers are appreciated.
Dawn
Today I had my typical Thursday morning "appointment" (hemodialysis). My nurse/tech is his usual cheerful and "too cute for his age" self. Bantering with me or perhaps simply for his own entertainment as he prepares to infiltrate my body with those ever so delicate "needles" (ya right!)
Somewhere in the nonsense I hear him comment, "ya gotta have goals..." There was a time when I would have laughed out loud. This morning, I practically choke on a slightly forced smile. "REALLY? Why do I have to have goals anymore?" This is what I'm thinking but the words that come out of my mouth are more along the lines of, "yeah, my goal these days is just to get out of bed in the morning." (Some days I don't.) As the irony settles in my brain, I just say, "where's my book?! I've gotta write this one down!!" And I really do laugh.
So.......Phil promised to work on his "-isms." And I promised that he was gonna end up in my blog today. He's probably working on them even as I blog......
Just this day I found myself jotting in "my little black book." Repeatedly!
No, "my little black book" is not a directory of phone numbers of attractive men - darn! I thought 50 is supposed to be a woman's "prime" - just my luck! "My little black book" is my book of notes to myself that I always carry with me. Often ideas for blogs are written, more often lately, it's my "to do" and grocery lists. Not all of my notes make it to the page. One day I was in an ice cream store and pulled my book out as we were ordering.......my daughter, "uh oh-ed" as she explained to our server what that meant. I think sometimes it embarrassed her that in the middle of ANYTHING I could stop and pull out that book! (That particular time the comment had to do with something he said about superman ice cream.) Anyways, I'm excited! I feel as though my life is slowly but certainly coming to a new norm. Part of my "writer's block" has certainly been my grief over the last year plus. Part of it is that I know that to be real, I'll have to write some of it and parts are still too painful. Some details will never make it to this forum, which is as it should be. For today, I'm just so happy that "my little black book" was so active!
Enjoy The Blessings!
Tonight it was a night "on the town" in beautiful Fellsmere, FL. Angela volunteered at the annual Frog Leg Festival as did many from the tennis team.
My fair food of choice is Italian sausage sandwich with fried onions and peppers and NOT fried frogs legs. Unfortunately, my tasters have been "off" for many months (meds perhaps?) and once again eating was difficult.
Without a doubt, the most entertaining part of the evening was not the "performer from Nashville" but Angela's adventure with the frog. She is terrified of them. In one photo I couldn't decide if she was posing to kiss it or to take a bite!!! It was worth the $20.00 to watch her overcome her fear/phobia.
I took the cane and not the walker and although I was slow, I was there for almost two hours! (HUGE!)
(pain pills were involved.)
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