tag:blogger.com,1999:blog-75813435694259443862024-03-13T19:47:36.225-05:00Our Journey with Multiple MyelomaAnonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.comBlogger108125tag:blogger.com,1999:blog-7581343569425944386.post-28598484641300151582015-03-04T18:31:00.000-06:002015-03-04T18:31:03.742-06:00Six Months of a Year of Firsts.........<span style="font-family: Courier New, Courier, monospace;">Message to my honey:</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">Tomorrow, you will have been gone six months. Six months. Six months. Six months. It seems impossible that I've lived, without you, this long. This wasn't supposed to be....or maybe it was. We vowed "til' death do us part"......I just never realized how hard that would be. </span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span>
<span style="font-family: Courier New, Courier, monospace;">I'm going through this "year of firsts....."</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">The most important "first" is the fact that you are no longer here, with me/us, physically. That has probably been the hardest "first" with which I've had to deal. I know there are verses, in the Bible, that mention God bringing the dead back to life. I prayed and prayed for that.....for a miracle.......and I finally stopped. On a Sunday, I listened to a television church service which talked about grieving for those who have left us. The minister reminded me that "You would still be here had it been in God's plan." I know people may think I'm crazy (and I care not) but I hope you enjoyed our Christmas trip. That's one of the blessings of having you in an urn......you can still travel with me. I just couldn't stand the thought of you being alone, at Christmas. Or was it that I just couldn't stand to be without you? I touch the urn and feel like I'm still touching you.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">My 2nd "first" was the first trip that I took in October, without you. As long as I had an audio book, or something to which I could look forward - I was okay. Otherwise, those long stretches of road contained many tears. The hardest part of the trip was when I would get to an area where we had been, together. I had memories, but I also had tears and an almost constant disbelief that you were gone.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">Your 77th birthday happened, not long after you left us. That was the 3rd "first". We had gotten to the point that we were just thankful to wake up ..... birthdays weren't a big deal, but it was a big deal that you were no longer here to wake up beside me.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">Thanksgiving, 2014 was the 4th "first". Thankfully, I wasn't alone. Adam came home, from Engineer Training School, to be with me. He sat at your place at the dinner table. It wasn't the same. You always helped with the cooking. I felt alone, in the kitchen. You weren't there to help with the dressing, to bake the ham....it wasn't the same.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">Then came Christmas 2014 the 5th, and what I feared would be one of the hardest, "first". You and I spent this Christmas, in Texas. That's one of the blessings of having you in an urn. You can go with me. You were always so hard to buy for, and that's about the only blessing to this new life that I'm now living. You bought the best Christmas gifts. Christmas was hard - but so are many days. Again, thankfully I was with family, and I wasn't alone. I slipped out of the room, often, to shed my tears. </span><span style="font-family: 'Courier New', Courier, monospace;"> I just couldn't stand the thought of you being alone, at Christmas. Or was it that I just couldn't stand to be without you? I touch the urn and feel like I'm still touching you.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">I started 2015 without you....my 6th "first". I was back in the town where we had spent so many of our beginning years of marriage and where our first child was born. Where we owned our first house. It was an "only"....the only time that I had been there without you. I didn't drive by our old house, or your parents old house, or your old school. I couldn't. We've shared so many years together. This seems to be one of the hardest of all the "firsts"......the fact that it's going to be a year in which you won't have been with me.</span><br />
<span style="font-family: Courier New, Courier, monospace;"><br /></span><span style="font-family: Courier New, Courier, monospace;">My birthday....I added another "first"....the 7th. Adding another year to my life, even though your years stand still. Tonight I realized that one day (God willing) I will reach the year, in age, when you left us.</span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">Mardi Gras. You loved catching those beads! I wish you had been with us on this 8th "first" when it was Sydney's first, and Olivia's first, Mardi Gras. </span><br />
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<span style="font-family: Courier New, Courier, monospace;">And then Valentine's Day....the 9th "first." "Libby", as you called her, brought me a rose. Gale sent candy and a gift, Robbie called. They didn't forget me, but it wasn't the same. It was supposed to be "Lover's Day".... you will always be my love, even though you aren't here. </span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">The "firsts" will continue as the years pass. There will be many things that I do that you won't have done or won't have been with me, to do. </span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">I read something, I see something, I hear something and immediately, I want to tell you about it. "I need to tell Bob about this," seems to be my constant thought. How often we talked, on the phone......several times each day....about everything....or nothing. </span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">We had 54 years....we should have had 100! </span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">Life is good, but it often doesn't seem fair. </span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">These six months have flown by.......it seems like just yesterday when you said "I Love You".....and I'd really love to hear it, just one more time.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;"><br /></span>
<span style="font-family: 'Courier New', Courier, monospace;">Grieving through a year of firsts.....</span><br />
<span style="font-family: Courier New, Courier, monospace;">#grieving #firstyear #cancer #sad @sixmonths #death #grief</span><br />
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Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com15tag:blogger.com,1999:blog-7581343569425944386.post-67697616539522942012014-10-21T23:33:00.001-05:002014-10-21T23:33:40.837-05:00I Am Ordinary.....I sit in my rocker on my front porch of our house built by my honey. I watch the tall pines, to the east of my house, as the tops are circling in the wind. I’ve burrowed deep into Elizabeth Kubler-Ross’ ‘Five Stages of Grief.’ I think I actually began the grieving process the day I was told he had cancer. I knew this day would come. I tried to imagine how it would be without him. At night, as I lay beside him, I would attempt to commit the nights to memory – knowing that, one day, he wouldn’t be there. <br /><br />I remember those nights, I remember those “front porch days” – days when I would sit and rock, knowing that one day he wouldn’t be inside, in his recliner. I now look back on those nights and days – remembering and trying to feel him, there beside me. It was an impossible feat, then and it’s impossible, now. <br /><br />I look at the legacy he left behind. He was a very talented craftsman. I live in a home that he designed and built. Our children and grandchildren and friends have beautiful “Handcrafted by Bob Gorrell” pieces. We would rather have him!<br /><br />My pastor recently spoke on “Being Ordinary”. At the time, I didn’t connect what he was saying to me. <br /><br />Recently, a sweet cousin who lost her husband, made me realize that I’m not so unusual. I mentioned that I had prayed, fervently, that God would allow this to be a bad dream. Let me awaken one morning and have Bob there. I would imagine saying to him, “you won’t believe what I dreamed.” Her response was, “I also did that.”<br /><br />I related to our youngest daughter, my conversation with my cousin, and her response was “Mom, that’s what Brother Beard preached about. He was speaking to you. You are normal.”<br /><br />God works in mysterious ways, and things happen for a reason – even though we may never understand why. God has proven to me, in so many ways, how blessed I am to be in this small town with so many friends and family. I’ve also learned that I am ordinary …..and that’s such a relief!Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com7tag:blogger.com,1999:blog-7581343569425944386.post-57725873347186169612014-09-16T17:50:00.000-05:002014-09-16T17:50:00.920-05:00Life Goes On.....<span style="font-family: Arial, Helvetica, sans-serif;">We all have hard days of one kind or another, in our lives. A young son-in-law was killed, in a one car accident, years ago.....that was a hard day. My dad had a massive stroke and passed away.....that was a hard day. My mom died, suddenly........that was a hard day. My honey was diagnosed with MM on October 7, 2010....not quite 4 years ago (the doctor predicted that he would live 5 years).....that was a terrible day. He has been in and out of remission during this time, but remission was "just a word" (as one caregiver reminded me). He very seldom felt good and was in pain most of the time. On Thursday, August 28, 2014 I called hospice......and that was a bad day. But the worst day, of my entire life, came on Friday, September 5, 2014 when my honey took his last breath. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">He had begun to have many, mini strokes. He could no longer swallow without being reminded to do so. He was incontinent and was unable to stand and straighten his legs. Our youngest daughter and I were his constant caregivers. Near the end, I put a baby monitor in his room so I could hear him call me. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">God truly blessed us. During those last days, there were about 3 where he could still speak and knew what we were saying to him. He had begun to call me "mama" over the past year and he often called out to me. We were able to express our love, for each other, one last time. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">He left us a legacy....a beautiful house that he designed and built. A front porch that is my place of solace....a place where we can go to cry because he's no longer here....but remember the good times, good memories, good man.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">He always commented that, if we died, we'd have to call "Rent-A-Friend". I hope he was able to see all the folks who came to honor him. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">His Urn of Ashes now sits in the Library he built, in our house. I feel comfortable knowing that he's "back home" with me. It will sit there....until I go....then mine will, once again, be joined with my honey.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">.........Sadly......life goes on.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">#MultipleMyeloma #death #passing #cremation</span><br />
<br />Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com10tag:blogger.com,1999:blog-7581343569425944386.post-73864031574712929042014-09-11T03:42:00.000-05:002014-09-11T03:42:08.442-05:00Another MM Warrior in heaven..........<br />
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<b> </b></span><b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">For Bob</span></b><b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt;">
<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">God gave you the strength of the mighty oak<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">He blessed you with the warmth of the sun<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You received the energy of the raging wind<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">And your laughter he threw in for fun.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Your hair like snow covering a mountain<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Your eyes blue as the sky above<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">He gave you a smile that could light a room<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">And a heart overflowing with love.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You were blessed with wonderful talent<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">God gave you a sense of design<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Forever you’ll be remembered<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">By the legacy you’ve left behind.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">We’ll remember you loved to travel<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">So many sights we were able to see<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You had a sense of adventure<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">And a love of history.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Your shop was your place of solace<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You loved NASCAR and state football<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Golf was a favorite hobby<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">But love of family topped them all.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You’ve been a perfect role model<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">For our family through the years<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">We’ll cherish the lessons you taught us<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">As we wipe away our tears.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Your side of the bed now empty<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">No one in your favorite chair<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">How can I live without you?<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">We were the perfect pair.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">You’re our own special angel<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Watching us from above<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Thanks for the years you gave us<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">Thanks for the unconditional love.<o:p></o:p></span></b></div>
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<b><span style="font-family: "Lucida Handwriting"; font-size: 11.0pt; mso-bidi-font-family: Arial;">With all my love, Sarah</span></b><b><span style="font-family: Arial; font-size: 11.0pt;"><o:p></o:p></span></b></div>
Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com8tag:blogger.com,1999:blog-7581343569425944386.post-54529357664776142472013-08-06T13:51:00.001-05:002017-10-24T17:07:59.538-05:00You Want Me To Do What??<span style="mso-spacerun: yes;"> </span>I took my honey to
his GP, yesterday (it was a struggle, but he finally agreed to go...in an
attempt to find out why he feels so bad.)<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
(1) On Friday, his Blood Glucose was 263 and daughter Gale
(nurse) gave him Insulin. (In the hospital, insulin is given if it is over
150.) Said GP got irritated and told me I was "premature" in doing
this. So.....here's what he advised: Increase his oral med (from 2.5 mg to 5
mg), take Blood Sugar twice each day....and if it's over 250, give insulin. Isn't that what we did?
(Except that we didn't increase the oral med.)</div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
(2) Several months ago, we were having issues with Bob's Blood Pressure dropping.
He was on a "check BP and if the Systolic (top) is over 150 give BP med,
and if it's below 150, do nothing" plan. (Another GP had us doing this.)
This GP (we changed docs) did not like that plan, so put him on a med to bring
his BP up and I could understand this. When it finally got back to what I
considered "normal," I discontinued the drug. Yesterday, when I
revealed that to the GP......I was told I need to ALWAYS give him the drug to
bring the BP up...and if it's over 150, give him his BP med to bring it down!
So, the BP is now in a normal range and I'm going to give meds to cause it to go
up and then give him meds to cause it to go down.<span style="mso-spacerun: yes;"> </span>What????? How is that different from what I
was doing....except I wasn't pushing it up (it has not been low, for months). This
morning, the systolic was 122, and I really had a hard time giving him a little
white pill to make it go up.</div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="mso-spacerun: yes;"> </span>(3) GP advised that
my honey's meds for anxiety/depression should be increased, and my thoughts
were......."if we keep seeing you, I'll need to have my own
increased!" </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
(4) An antibiotic was prescribed for the bacteria and mucus,
found in his kidneys. I'm hoping this is the reason he has been feeling so bad.
If so, it was worth the trip!</div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
I'm not trying to play "doctor" as I was once
told, by a friend. I just have enough sense to question what sounds unreasonable
or ridiculous. Too bad that our good Dr. H. isn't a Hemoc/GP!!<span style="mso-spacerun: yes;"> </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
My honey told me last night, as we were getting close to
sleep....."I was praying that you and that doctor weren't going to get
into a fight.....I could see the hairs standing up, on the back of your
neck."<span style="mso-spacerun: yes;"> </span>(Next time, he may not let
me go with him!)<br />
<br />
We appreciate your comments.......<br />
<br />
</div>
Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com13tag:blogger.com,1999:blog-7581343569425944386.post-51790097702829373312013-05-21T17:58:00.002-05:002013-05-21T20:12:10.793-05:00The Patient or the Caregiver?Not long ago, a Multiple Myeloma patient asked the following question on the Multiple Myeloma Support Group Facebook page: "<span class="messageBody" data-ft="{"type":3}"><span class="userContent">I often wonder, what is mentally worse, the person who has MM or the wife, husband, etc who cares for that person?"</span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent"></span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent">Of course, responses were many and varied from both MM patients and caregivers. The concensus was that the patient gets the worst end of the deal. As one would expect, most of the MM patients felt that their caregivers had it worse.</span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent"></span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent">MM leaves no stone unturned, so to speak, in the patient's body. It affects the blood and bone marrow, it can leave the bones, including the skull, with lesions (looking like lace or Swiss Cheese). The bones become weakened and fragile, and with the fragility comes the risk of fractures. The kidneys are affected, as is the immune system; leaving the patient vulnerable to all types of infections. The various types of chemotherapy treatment, while attacking the cancer cells, also attack the good cells which can also introduce other organ issues. </span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent"></span></span><br />
<span class="messageBody" data-ft="{"type":3}"><span class="userContent">While it attacks the patient's body, the Multiple Myeloma metastasizes to the entire family - mentally. Everyone is affected, but the caregiver becomes immersed in everything dealing with the patient; the care, the disease, the frustration, the treatment, the decision making process, the drugs, stress, lack of rest, lack of sleep, new responsibilities that were once handled by the patient, and often financial responsibilities. Cancer isn't cheap!</span></span><br />
<br />
The patient's body is often racked with pain, but once the journey is over - the pain is transferred to the caregiver and the family. The pain isn't the same - it's the pain of grief, lonliness, frustration, anger, despair, decisions, and again financial responsibilities.<br />
<br />
I'm so thankful I have not yet had to travel the final leg of this journey. We've been fortunate. My honey was diagnosed in October, 2010 and after six cycles of Velcade/Dex, he achieved a short response/remission the following May. He relapsed after only three months and Revlimid/Dex was introduced. This time, after only two cycles he was, once again, in CR and has been so (without a SCT) since November, 2011.<br />
<br />
He is bothered by almost continuous pain, in his back, if he stands too long - even with pain medications. And PN is a constant companion even though he has had no Velcade (believed to be one of the culprits) since May, 2011.<br />
<br />
As his wife and caregiver, I've been completely "wrapped up" with him and his cancer since he was first diagnosed. He had enough going on, so I took it upon myself to take care of his medications and his appointments. I began to research every bit of information I could find on the subject as well as any supplement that might help with whatever his current issue was. I became the record keeper and started a journal with minute details of changes taking place within his body - on a daily basis. I created a medication list with the name of the drug, the dosage, the date started and the instructions. His system was, and still is, very sensitive to any change, so that list became extremely important. Whenever he began to have issues, I checked the medication list to determine if there was a new drug or a change to a drug. More than once, that list helped to resolve an issue. <br />
<br />
I had always "bragged" about my own good health. I was in my early 70s, and I had never had to take any meds with the exception of a weekly bone strengthener. My honey was in remission and all would be right with the world. It was not to be.<br />
<br />
Just about three months ago, early one morning I was awakened with pains in my chest, arms and jaws. I got out of bed, took a baby aspirin, went back to bed and the pain subsided. The next morning, about the same time, the same thing happened. I allowed myself to lie in bed, for awhile, and try to reason that it was the bone strengthener - perhaps it was causing ONJ. Of course, I couldn't wrap my mind around why my chest, back, and arms were hurting! I finally got out of bed and once more, took baby aspirin - this time I took 4 rather than just 1. The pain didn't go away. I took my Blood Pressure, and I knew enough to know that there was trouble in the making.<br />
<br />
My Blood Pressure was dropping and my heart rate had risen to well over 100 (it should be in the 70 - 90 range.) Around 8 a.m. (4 hours after my pains had started), I called our daughter Gale, a RN. A good "tongue thrashing" by said daughter for not calling earlier, a trip to the ER, IV meds to get the heart rate down and the blood thinned (it had gotten so thick it was unable to be drawn), a Heart Cath, a few days in the hospital, a diagnosis of AFib, and a handful of new prescriptions later....and I was now among the "elderly" (I do hate that word!) that must take meds.<br />
<br />
I could not help but wonder why my heart issues happened AFTER things had gotten better, in our house. As our daughter Robbie (who made the trip home from Texas to help out) said "Mom, this was a wake up call". I didn't have a stroke, and I didn't have a heart attack, but I had been given notice that I needed to start taking better care of the caregiver: me!<br />
<br />
I know, without a doubt, that it's my honey who got the worst end of this deal. I'll continue to do everything within my power to assure that his journey is as comfortable as possible....and I'll try to take better care of me while I'm taking care of him.<br />
<br />
<br />
<br />
<br />
<br />
Please feel free to leave a comment:<span class="messageBody" data-ft="{"type":3}"> </span>Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com8tag:blogger.com,1999:blog-7581343569425944386.post-11182385319006892122013-04-04T10:10:00.000-05:002013-04-04T10:10:16.465-05:00An Angel gets his wings....My honey was diagnosed with Multiple Myeloma in October, 2010. Seven months prior to that, in March, Mike Murray from our neighboring state of Alabama was diagnosed. Mike's wife, Angie, and I became friends through a mutual friend, Dina, who knew that we had something in common.....husbands with the same type of incurable cancer.<br />
<br />
When I first became friends with Angie, her honey had already had two Stem Cell Transplants, but was taking Chemo. I couldn't understand, if he'd had transplants, why he was still having to take Chemo? Angie explained that Mike's MM was very aggressive, and he would probably always be on treatment.<br />
<br />
For much of the time I have known Angie, they have been at MIRT (Myeloma Institute for Research and Therapy) at the University of Arkansas in Little Rock. They lived in a furnished apartment in Little Rock; supplied by a church for patients who have to be there long-term.<br />
<br />
Angie has been Mike's full-time caregiver as he has traveled this journey. She has been his source of support and comfort, and has truly exhibited the Bible's phrase, "the strength of Job." Her faith and love has never faltered as she has walked this often stressful, and tiring pathway with the love of her life. <br />
<br />
On Thursday night, just before Easter, Mike was moved into a hospice facility. Those of us in the MM community knew that Mike's journey would soon end. Angie's postings on his Carepages website had become infrequent, and we knew that all her waking moments were being spent by his side. <br />
<br />
The day before Easter, Angie's "Magic Mike" finished his battle and ended his journey. May the rest of us caregivers, in the MM community, learn from Angie Murray. She faced the unthinkable with grace, dignity, strength, and faith ....... <br />
<br />
and her Angel got his wings, on the perfect weekend.<br />
<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com4tag:blogger.com,1999:blog-7581343569425944386.post-42981243834444619332013-02-24T18:02:00.001-06:002013-02-24T18:02:41.580-06:00Bringing you up-to-dateI've really been slacking on my blogging. In order to catch everyone up on what's been happening at this MM house, here's a quick run-through: Home from our almost month long RV Thanksgiving trip to Texas, Christmas here and gone, wonderful and unseasonably warm 'porch-sitting' weather in January, a weekend trip to the "Big Easy" and six Mardi Gras parades, a visit in February from a dear Iowa friend, and a tornado that ripped through a nearby town and destroyed the home of another MM patient and his wife/caregiver. Suddenly you're up-to-date. (And you really missed nothing important!)<br />
<br />
Thankfully, we got through most of the winter (it isn't over yet, is it?) without my honey having the flu ..... or worse, pneumonia. Just a bad cough and cold, while in TX, but the good Dr. H. prescribed an antibiotic which kept it from getting worse.<br />
<br />
Lately, we've been battling issues with low Blood Pressure, which usually indicates either dehydration or a kidney infection. He's gotten fluids, at the Cancer Center, and has taken 14 days of Cipro. This week, we're going to a new Internist to determine what can be done to keep his BP where it's supposed to be. <br />
<br />
Today has been a "walk with two canes" kinda' day........he's dizzy (it isn't the BP or his Blood Sugar), and very unstable. Seems like a bad case of Vertigo, which can be miserable. Glad he has a doctor's appointment this week! <br />
<br />
All in all, things are pretty good at this house. My honey doesn't always feel good, gets tired very easily, and spends quite a lot of time in his recliner....dreaming about "what might have been". He's really one of those "you don't look sick" people - he looks good.....now, if he could just feel better!!<br />
<br />
Thank you for your support and for reading, and I'll try to be a better blogger. Just know, if I don't post....it's probably good news! Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com2tag:blogger.com,1999:blog-7581343569425944386.post-90227528251960065962012-11-21T15:16:00.001-06:002012-11-21T15:16:45.604-06:00Giving thanks, for more than just one day.......We made it through October! We lost a dear friend, but nothing bad, traumatic, monumental, earth-shattering, or even mildly disconcerting, etc. happened in our house. For those of you, unaware, October is generally "the" month. If it's going to happen, it happens then.<br />
<br />
I remember when I first began this blog, I read on the blog of another that MMers and caregivers tend to blog less when "things are good". At the time, I thought "that's not me.....I'm wordy, I'll write". Today, I realized he was right - I am blogging less, because there's really not much to say. For that, I'm extremely happy! <br />
<br />
We moved our Motorhome back to our house at the end of October after a month's stay on the beautiful MS Gulf Coast. As I've often written, we never know if plans we make will happen - so nothing is "concrete". Plans are made - to be broken! <br />
<br />
Ever since his diagnosis, Bob has had so much trouble with his legs. They always seem to hurt, and he has such a hard time moving around. Sometime ago, on the Multiple Myeloma Support Group FB page, someone offered a suggestion regarding a supplement prescribed by the Dana Farber Cancer Institute, for MM patients experiencing neuropathy. I searched for, and found, the Acetyl L-Carnitine HCI - 400 mg w/Alpha Lipoic Acid - 200 mg. and began giving him one in the morning and one at night (after first consulting with his doctor, of course). Just a little under a month, and his legs are so much better. Nothing else, in his medication regimen has changed .....so it has to be these little gems that are working! I've learned that it really is (pardon this expression) a "crap shoot" .... just never know what will work and what won't. And, things that work for one patient have no effect on another. <br />
<br />
With my honey doing so much better, we decided to try (that being the operative word) another RV trip! This time with Texas, and our youngest daughter as the destination, while the weather was still good and with Thanksgiving approaching. I had to be assured that Bob could handle the driving (that isn't my job). I've become very adept at helping him get set up, after we arrive, and I'm a great co-pilot (you know the kind - I'm good at "move over - you're too close to the edge, get off the center line, Bob!! you're too close to that truck, OMG!!) He just laughs.....and ignores me!!<br />
<br />
With three puppies, I really think he had the easiest job - even with me "trying" to tell him what to do. I rode, from Mississippi to Dallas, with a pillow and 3 dogs in my lap. There were four of us in the seat, and three were comfortable - you can guess which three!<br />
<br />
The drive across east Texas, after stopping, for the night, in Bossier City, LA was so pretty. I've never thought of Texas as a place to take a "Fall Foliage Tour", but the trees were absolutely beautiful. The yellow oaks, orange leaves of the sweet gum and red maples against backdrops of pines were stunning.<br />
<br />
We arrived at our campsite, in the Dallas area, about mid-afternoon - ready to see our baby-daughter (42, but still our "baby"). My honey was tired - but he had done it! <br />
<br />
MM has made so many changes, in our lives, but it has also made us so appreciative and so thankful for anything/everything/many things. I appreciate everything that my honey is now able to do .... and I tell him so. I thank him for trying. I know there are times that he hurts, and he's tired - but he tries to keep going. I'm thankful. I'm thankful for everyday that I have him.<br />
<br />
Happy Thanksgiving to all of you - just remember.......be thankful for every day!!<br />
Success!!Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com4tag:blogger.com,1999:blog-7581343569425944386.post-74311954017927419942012-10-11T15:55:00.000-05:002012-10-11T15:55:04.622-05:00We don't really like October.......We entered into the month of October with a bit of trepidation, and rightfully so. This past week, two years ago, we were back and forth to the doctor searching for answers. We had just celebrated our 50th Wedding Anniversary, took off on what was to be a great adventure in our RV, and things began to go downhill from there. <br />
<br />
October, 2010 was the month my honey was diagnosed with Multiple Myeloma, and began to face the pain and treatment that accompanies cancer.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-0crKy6kE2uM2ja59LASlJPh84-pPqmktpE70h1eJmB5umwURJK6luAlPhTAjZ-NSV-k77AVZ5YkPQNtdyA4TsSm3CbJsP7RR1oWNg6R6iG5yWoixoof_XW0Cr-ihFoZM3lFEPFUbLg/s1600/DSC08266.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-0crKy6kE2uM2ja59LASlJPh84-pPqmktpE70h1eJmB5umwURJK6luAlPhTAjZ-NSV-k77AVZ5YkPQNtdyA4TsSm3CbJsP7RR1oWNg6R6iG5yWoixoof_XW0Cr-ihFoZM3lFEPFUbLg/s200/DSC08266.JPG" width="200" /></a></div>
October, 2011 - one year later - back in our RV and on the beautiful MS Gulf Coast......he became very ill. Pneumonia, Renal Failure, and later, a Staph Infection, provided him with a "most expenses paid" three week stay in the hospital.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5qixe-4LHhYi9Fnjh4RWGYEifi63oqslkzVfDl4KzzN29TLJokJZL_vlZKKuoWV3IsxWsDdauVPfbwo_cxIYshFQZfOUneB2nkzVG6-n5vADsn1QanZdeI01tP-rSDFwNXgLI0TU_0v4/s1600/DSC08267.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5qixe-4LHhYi9Fnjh4RWGYEifi63oqslkzVfDl4KzzN29TLJokJZL_vlZKKuoWV3IsxWsDdauVPfbwo_cxIYshFQZfOUneB2nkzVG6-n5vADsn1QanZdeI01tP-rSDFwNXgLI0TU_0v4/s200/DSC08267.JPG" width="200" /></a></div>
October, 2012 - two years later - back in our RV on the MS Gulf Coast (stubborn and determinded). Enjoying beautiful weather with newfound friends - people who had come to enjoy the week long 16th Annual "Cruisin' the Coast". Over 6,000 antique cars and trucks representing 37 states and hundreds of cities and towns converged on the cities along the coast. <br />
<br />
This October, my honey is doing good - pain pretty well under control (with meds), no illness or infection, and still in remission. He manages the fatigue, weakness and instability that seems to accompany his disease.<br />
<br />
Unfortunately, yesterday we realized this October was to be no different than the other two. It has been marked by sadness at the death of a dear friend, Kermit Littleton. He and my honey had been friends for over 60 years. Kermit was diagnosed with cancer just 8 months after Bob's diagnosis, and he didn't live quite as long as the doctor predicted. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJit-3-wmdLfi7i9GJUzLhrC5idietzx_sNRep_03ibUWXTokT_P61AqiSjDW3De8w00w3JfNtU-yTe1-11bnEZva11dG3XQlfHJo6wIWhjRRpja_9NC6Wq7n1pYGZetNPd7kiGOROoAE/s1600/Bob,+Kermit+and+Sam+-+May,+2012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJit-3-wmdLfi7i9GJUzLhrC5idietzx_sNRep_03ibUWXTokT_P61AqiSjDW3De8w00w3JfNtU-yTe1-11bnEZva11dG3XQlfHJo6wIWhjRRpja_9NC6Wq7n1pYGZetNPd7kiGOROoAE/s640/Bob,+Kermit+and+Sam+-+May,+2012.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bob, Kermit, and Sam .....together for the last time ...... May, 2012</td></tr>
</tbody></table>
Next weekend we, along with the third couple of our group, Sam and Ann Greco, will head to the north Georgia mountain town of Ellijay, to celebrate Kermit's life and surround his wife, Nita, with our love. We'll say goodbye as his ashes float in one of the trout streams, where he loved to fish.<br />
<br />
We'll be happy when October is behind us........Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com6tag:blogger.com,1999:blog-7581343569425944386.post-6990436776907424232012-09-06T22:29:00.002-05:002012-09-06T22:29:24.004-05:00Making Adjustments.....<h2 style="margin: 0px;">
“Happiness comes from... some curious
adjustment to life.” ... Huge Walpole, Sr.</h2>
<div style="margin: 0px;">
<br /></div>
<div style="margin: 0px;">
</div>
<div style="margin: 0px;">
During the almost two years that we've been dealing with my honey's MM, we've waded through many "curious" adjustments. Prior to his diagnosis, I'm not sure if I'd ever heard of Multiple Myeloma - but I knew, just by the suffix 'oma', it was some type of cancer. I was definitely eager to learn more, I HAD to learn more. I HAD to know what he (we/were) was facing. </div>
<div style="margin: 0px;">
<br /></div>
<div style="margin: 0px;">
I became very inquisitive, not only of his doctors and nurses, but of others who were also dealing with this rare form of cancer. I was thankful for my computer skills and quickly learned that everything online shouldn't be construed as gospel. Being inquisitve, and prying, took me to great Myeloma websites, lists, blogs, and put me in touch with other patients and caregivers on this same journey. </div>
<div style="margin: 0px;">
<br /></div>
<div style="margin: 0px;">
I now see others, on the various Myeloma websites, that have the same curiosity and are just as inquisitve as I was. I encourage curiosity and inquisitiveness, and I advise that everyone keep in mind that changes, improvements, advancements are being made everyday. It's wonderful to read that MM may soon be thought of as a "Chronic Disease". </div>
<div style="margin: 0px;">
<br /></div>
<div style="margin: 0px;">
We've had to make many adjustments to both our lives, while on this journey. One begins to understand that the damage the Myeloma causes to the bones may mean that former activities, once enjoyed (like golf or working in his shop), may no longer be possible. Walking long distances can cause pain and may even be impossible. Fatigue is a big issue, while balance and stability are even more so. Just recently, while getting ready to FINALLY try and get our RV back out on-the-road, my honey had a terrible fall in our kitchen. It can only be best described as a "stumbling, staggering, trying to stop falling" type of fall. It started at the kitchen door and ended when his head slammed into a cabinet across the room, and his knees hit the hard tile of the floor. Thankfully, no broken bones - just bruised and swelling and off his feet, with legs elevated and with ice packs to try and alleviate the swelling. This sudden, unexpected, (certainly not needed) fall has caused a set back. <br />
<br />
And just as we have had to make adjustments for him.....I've made them for myself. No longer do I feel that I can "jump in the car" and go somewhere. Even though he would probably be okay, I don't leave him alone for very long periods of time. That's an "adjustment" that I haven't been very successful in making for myself - that feeling that he shouldn't be alone. I'm working on that one! <br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1sMRzORco3bYaBza_hWmWaMxufXvH1BEAX0sgJ7aHjCSlClS57gQaqbNXb6FA0_JT1Ux80E3mx5IYAw7y8gnjxvIV-SXbLwpFxyhtTcdZ4g64M1T509Xu9lJVA7ZbkcnlTqaxQ3nZKBc/s1600/Adjusting.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1sMRzORco3bYaBza_hWmWaMxufXvH1BEAX0sgJ7aHjCSlClS57gQaqbNXb6FA0_JT1Ux80E3mx5IYAw7y8gnjxvIV-SXbLwpFxyhtTcdZ4g64M1T509Xu9lJVA7ZbkcnlTqaxQ3nZKBc/s200/Adjusting.jpg" width="200" /></a> As another caregiver/blogger wrote, life tends to become a balancing act. We begin to realize that life isn't what it once was. We do what we can, when we can. We make adjustments. We often make plans that are unable to be kept.<br />
<br />
<br />
Things that my honey once did, or were his responsibility, have (in many cases) either become mine.....or often just don't get done. He isn't supposed to lift anything that weighs more than 10 lbs. That's quite an adjustment for him, and he doesn't always adhere to that restriction. After all, it isn't very "manly" to allow a woman to do the lifting of heavier stuff......like a case of bottled water, etc. <br />
<br />
Accustomed to going wherever we wanted, whenever we wanted, is no longer possible. My honey is unable to ride long distances (we loved road trips), unable to sit for very long, unable to stand for very long, unable to walk very far ....... you get the picture. We've had to adjust for all these new inabilities.<br />
<br />
As Sean Murray, another MM "victim" and blogger, wrote in his column in <a href="http://www.myelomabeacon.com/" target="_blank">The Myeloma Beacon,</a> we've had to "say goodbye" to life as we knew it. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHKA7kgppKGckmk65LY09V41zO3XMChg0yKE9_s75MR9X-9z8r3chVQo3Hk5BqiFeJFBrEXLchwrWIDMO1A9aPmQkRzG5KVyk0ZyKUbpbSKTIqqFsfgnpwQl2h1ghow7OMdS7ElV6dfZ4/s1600/adjustment.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHKA7kgppKGckmk65LY09V41zO3XMChg0yKE9_s75MR9X-9z8r3chVQo3Hk5BqiFeJFBrEXLchwrWIDMO1A9aPmQkRzG5KVyk0ZyKUbpbSKTIqqFsfgnpwQl2h1ghow7OMdS7ElV6dfZ4/s1600/adjustment.jpg" /></a><br />
We're learning to balance this life with the days, weeks, months, and hopefully years that my honey has left. It isn't easy to "say goodbye" to the life we knew and enjoyed. Probably the best adjustment has been to learn to enjoy the life we have. Treasure each and every day. Take nothing for granted. <br />
<br />
Happiness absolutely is whatever curious adjustments you need to make....to your life (let's just hope YOUR life doesn't include MM!)<br />
<br />
</div>
Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com9tag:blogger.com,1999:blog-7581343569425944386.post-51847907511423135452012-07-26T17:32:00.002-05:002012-07-26T17:32:35.436-05:00The best news, ever......<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTf8-qmfLIDybfNsvE7Qscg9t0x-JY5JHb3V6umEyj5I0ReNG2zxAAWfbQYNMOhTzKEDn9rf_2a0diCmGjD6zssOGlstGL7_8uYmzkLaOyzGQH4QiP9kEbLVfWJ06XTyBGd8ZVCwbzzfc/s1600/Good_News.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTf8-qmfLIDybfNsvE7Qscg9t0x-JY5JHb3V6umEyj5I0ReNG2zxAAWfbQYNMOhTzKEDn9rf_2a0diCmGjD6zssOGlstGL7_8uYmzkLaOyzGQH4QiP9kEbLVfWJ06XTyBGd8ZVCwbzzfc/s1600/Good_News.jpg" /></a></div>
On Tuesday, my honey had his long day at the Cancer Center.......Infusions of Zometa to strengthen his bones and IVIG to boost his immune system. All the monthly labs were done.<br />
<br />
He has been on a "Chemo Vacation" since May 26 - exactly two months, and he's still in remission....CR, whatever......his numbers are good.....no, great.....his labs are great!!<br />
<br />
He's feeling better, by the day. He's up and around. (Yes, I'm knocking on wood, as I report this....no jinxing this time!)<br />
<br />
Thank you for all your prayers, and good thoughts...and Thank you Lord!!<br />
<br />Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com12tag:blogger.com,1999:blog-7581343569425944386.post-26257214390211848852012-07-26T17:14:00.002-05:002012-07-26T17:14:24.494-05:00A Handful of Spoons............A few months ago, I was honored to be a judge in the WEGO Health Activist competition.. A Health Activist may be a caregiver, a patient, a medical professional, a family member, a friend, Relay for Life participants - anyone who promotes awareness, or cares about those with various illnesses, diseases, health conditions, or disabilities.<br />
<br />
There were so many illnesses and diseases of which I had been unaware, until my participation in this online event. The competition, and awards, recognized individuals taking extra steps to promote awareness and provide information through many different avenues, both in person and online in blogs or web pages.<br />
<br />
Christine Miserandino, afflicted with Lupus, and the originator of 'The Spoon Theory' was the winner in her category of Best Affirmation Post. This young woman has been very creative in her use of spoons to explain her illness and how it affected her and her abilities. Healthy individuals are able to go about a daily routine without a need for medications. People with illness or disabilities have to plan their day, and most often aren't able to accomplish the most minimal of tasks either because of pain or a disability. Those of us, living a normal life - without illness, have an unlimited number of "spoons" to get us through our days. <br />
<br />
What a brilliant idea! Why hadn't I thought of something like this! <br />
<br />
I began to think of ways to use the Spoon Theory to define Bob's Multiple <br />
Myeloma.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s200/Spoon+Theory.JPG" width="153" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2CbAsedZMaVrwPg2Np8_TTEJ40PSMXMV9gn-sy4DpVdFUEeyiddbf6vHKTSB4Uyq5d4afARbeYo3ye_A4iL2BQyaAxpYtfGHMZg2g1nGk2uyye8UNZcte7Ojh_DurklX8J9ndR_sgs4/s1600/Spoon+Theory.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><div style="text-align: left;" unselectable="on">
</div>
</a>Christine's Lupus is painful and debilitating and requires her to plan her days, much the same as Bob. Each morning, he picks up an imaginary handful of spoons when he awakens. Just to get out of bed he must give up a spoon. Standing up straight, and waiting so he won't be dizzy, uses another spoon. The spoons he has left must take him through the day and all the things he needs to do.<br />
<br />
He slowly walks to the bathroom - using another spoon. Each activity - washing his face or brushing his teeth, uses a spoon. If he feels well enough to take a shower, and get dressed, it uses more spoons.<br />
<br />
A trip to the kitchen, eating breakfast, taking his meds - each must use one of the spoons he is holding. Every activity that we take for granted, uses a spoon for someone who is ill, or disabled. Some days, there just aren't enough spoons to make it through the day......but on other, better days there may be spoons left over. Those are the good days!<br />
<br />
Christine's 'Spoon Theory' actually helped me to realize, and understand, what my honey must be going through. If I were given a handful of spoons to allot to each activity of my day - I'm sure<br />
there would probably be days when I'd be sitting, in my chair. Days much like those that fill the "new normal" of my honey's life. <br />
<br />
I'm thankful that lately, he seems to have spoons left over. These days, he isn't using his handful of spoons. I'm thankful for Christine and her analogy of spoons and how they can relate to illness and pain, not just for my honey - but for anyone with an illness or disease. <br />
<br />
Strangely enough, Christine's blog is entitled 'But You Don't Look Sick'. Often, my honey is told how good he looks.........but nobody knows how many spoons he's had to use that day!<br />
<br />
You can read Christine's 'Spoon Theory' at <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/" target="_blank">http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com2tag:blogger.com,1999:blog-7581343569425944386.post-89732067954982900432012-07-16T10:33:00.000-05:002012-07-16T10:33:58.149-05:00Living Life...........If I've learned anything about this disease and the effects on the "victim", it's that one should not get too excited when good things happen because they can be short-lived. <br />
<br />
Jumping right to the good news first - my honey is still in remission (Complete Response), so the vacation from treatment can continue.<br />
<br />
Looking back over my journal, and calendar, and notes of the past 21 months since my honey was diagnosed, I've noticed even though he has responded well to treatment, there have been many not-so-good days. Fearing the bad days might outnumber the good, I elected not to count.<br />
<br />
He has been in remission for several months but seldom feels good. So frustrating - for both of us! Remission was supposed to return our lives to normal, or so we thought.<br />
<br /><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">"What good is it to cure a patient's cancer if the process leaves him or her incapable of living life?" Leslie J. Waltke, PT</span><br />
<br /><br />
My mission, as his Caregiver, was to try and find the reason since the good Dr. H., seemingly in bewilderment, could only shake his head. I took away every drug that I possibly could, without endangering his life, (didn't stop the pain meds, or the BP med, or the Diabetes med, etc.) all to no avail. Time to look elsewhere.......<br />
<br />
When we met with the NP at his Pain Mgmt Specialist's office, we discussed the need for more Dilaudid for breakthrough pain, as well as how badly he seemed to feel. We questioned if the pain meds could be the reason for his never feeling good. (The morning of our appointment, he felt so bad that he sat in the chair and slept while she visited with me). She questioned his low dosage of MS-Contin (15 mg. every 8 hours). His Pain doc decided to increase the MS-Contin dosage to 30 mg every 12 hours and discontinue the Dilaudid. His pain is under control with the increased dosage, and discontinuing the Dilaudid seems to have made a difference in how he feels. Amazing.....he had been on this med for well over one year. We could have stopped it (had anyone known) and he would have felt better! You're kidding me!!!<br />
<br />
In the meantime, he had Cellulitis in one of his toes and this required an antibiotic, which caused dizziness! The antibiotic was completed the end of last week, and the dizziness appears to be getting better. <br />
<br />
He's actually doing pretty good. He's in remission. His kidneys are functioning. His pain (other than his legs) is under control. He hasn't been to the hospital in 5 months! His appetite is pretty good. He looks good. We may have settled into that "New Normal" stage of our journey. Things are pretty stable.....<br />
<br />
......now, if we can just get back to "living life" part of this "new normal", it will be good. Living life entails getting up out of this chair to which he has grown so accustomed. I suggested maybe it was time for some Physical Therapy and was met with resistance. So, I've started my own type of "Positive Re-enforcement Therapy". I tell him how good he looks. I tell him he "looks" like he feels better. Some days it works - some it doesn't.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtbkxOOusviWBgvxAYFyxfPp4mdsoohv8DtKDmru2rR3YjPvjqbysoNIRlNWSviHvk2ukKkHhxvIs6kBEgDi5FB1LR9eYIFpx4Yz7Q9dpdWA-mkpn9y4Tw0Xux9uffyjcWMVyhUTlHThg/s1600/DSC07885.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtbkxOOusviWBgvxAYFyxfPp4mdsoohv8DtKDmru2rR3YjPvjqbysoNIRlNWSviHvk2ukKkHhxvIs6kBEgDi5FB1LR9eYIFpx4Yz7Q9dpdWA-mkpn9y4Tw0Xux9uffyjcWMVyhUTlHThg/s200/DSC07885.JPG" width="200" /></a></div>
Therapy can come in many forms, and the latest"addition" to our family are really trying to do their part to bring a smile to both our faces. We rescued "Wee", age 2, and "Precious", age 5 months, both Toy Pomeranians. They get us up, out of our chairs, and help us to focus on something other than the roller coaster ride of MM.<br />
<br />
How great it would be just to get on with living life, whether it be normal or new normal.....living life!!<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com4Taylorsville, MS 39168, USA31.8296038 -89.428120831.8026223 -89.467602800000009 31.856585300000003 -89.3886388tag:blogger.com,1999:blog-7581343569425944386.post-83816312270860373302012-06-24T20:47:00.001-05:002012-06-24T20:51:19.595-05:00It's our life.....I read a post on another caregiver's blog.....she's taking a break and stepping away from blogging, for a bit, and I guess that's what I've done. We care 24/7 for someone with cancer. We don't know, exactly, how our patient feels.....but we can see by the grimace on their face, or hear the heavy breathing, and know the pain is there. We feel the pain of being unable to do anything, except offer the medications they've been given .....and hope that they find relief, if only for a short while.<br />
<br />
In early April, my honey had his 2nd Spinal Lumbar Radio Frequency Dennervation (nerve burning) or RFD for short. The first one in February, 2011 worked wonders and helped to assuage some of the pain, in his back. The RFD can be effective for 12 - 18 months, and can only be done once per year. By the end of this past January, we knew that the procedure was going to be necessary a 2nd time, and we held out great hopes that it would be as effective as the first one. Unfortunately, it seems that it isn't working as well this time. Thankfully, he has his "little blue pills and little white pills" that make the pain a little more manageable.<br />
<br />
He also has ostopenia/osteoporosis which has been made worse by the MM. Standing too long, or walking too much, causes great pain. He's now on CO-Q-10 and a nasal spray, which are both supposed to be helpful in treating osteoporosis......so far, no luck.<br />
<br />
He has been on steroids for many months, and Dr. H. decided to give him a break. The oral dosage, plus the steroid injections in his back, have played havoc not only with his blood glucose but also with his emotions, and just his feelings in general. I had begun to assume that was the culprit so was very happy when the decision was made to suspend them, for awhile. Unlike most MM patients, the Dex never seemed to affect his ability to sleep! LOL<br />
<br />
He's been in remission (or Complete Response, as it's called) since the fall of 2011, but has continued to be on a maintenance dose of Revlimid. Because he constantly feels bad (like someone with the flu), Dr. H. gave permission to stop his Chemo for awhile....or until his M-Spike begins to edge back up. (It would be great if that never happened and miracles do occur, but it's highly unlikely). Dr. H. thought it unlikely that the Revlimid was the reason for his never feeling good, and I'm sure he's probably right since my honey felt bad way before Revlimid became a part of his life. He's had tests, of all sorts, and everything seems to be fine.....other than the fact......he has cancer, feels bad, and of course...the pain.<br />
<br />
It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma. <br />
<br />
He tries, extremely hard, to "continue with life"......but he spends lots of time, in his recliner resting and/or sleeping. This is the "new normal" that MM patients, and their caregivers, learn to live with. <br />
<br />
Tuesday, he sees Dr. H at the Cancer Center and he will have been off Revlimid for one month and Dex for over two months. Hoping and praying that his M-Spike is still zero so his vacation from treatment can continue.<br />
<br />
It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma. It's our life, and we're still thankful for each and every day.Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com12tag:blogger.com,1999:blog-7581343569425944386.post-57744506773522329602012-04-08T23:47:00.000-05:002012-04-08T23:47:13.712-05:00Before our journey ends.......Exactly 18 months ago yesterday our lives were forever changed; when we began this journey. Like most, we knew that Bob had just been given a diagnosis of cancer, but we knew nothing about this incurable though treatable, and often even called chronic, disease. How quickly we began to learn!<br />
<br />
We learned early on, that everything on the Internet isn't the gospel and shouldn't be trusted. We found great Myeloma websites, and blogs, with information and support from other Myeloma "victims" and caregivers. We've been surrounded by wonderful friends, caring family, and above all ... great doctors. Finally, we learned that sometimes there are comments, and people, that we just have to ignore. <br />
<br />
It has often been a stressful year and one-half filled with everything from the initial diagnosis to pain and infections, both of which are not uncommon for Myeloma patients. During this leg of our journey, we've had quite a few hospital visits. Again, not uncommon for Myeloma patients. I was even beginning to think we might get a "frequent visitor" card! Other than being on a first name basis with a great group of nurses, there are no added benefits.<br />
<br />
Bob's back pain has begun to be almost constant, even with pain meds. On Wednesday, Dr. S. will perform another RFD (Radio Frequency Dennervation) which will hopefully bring much needed relief; as it did in February, 2011. <br />
<br />
There are days when my honey doesn't feel good, but on many of those days he makes an effort to go to his shop. Hearing the sounds of the sander, planer, saws, or even the "elevator music"that plays on the television in his shop allows me (and maybe both of us) to forget, just for a minute, that he has cancer. The cancer that invaded his body hasn't taken away his ability to design and build beautiful furniture......it just takes longer.<br />
<br />
Cancer, regardless of the type, can be debilitating, painful, stressful, and emotionally draining on everyone involved. Amazingly enough it also provides time........time to focus on the really important things in one's life. Time to realize that nothing should be taken for granted. Time to realize that each day is a blessing. Time for each other.<br />
<br />
The next part of our unplanned journey begins as this beautiful Easter Sunday ends. We can only hope and pray, that somewhere along the way, a cure will be found............before our journey ends.Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com14tag:blogger.com,1999:blog-7581343569425944386.post-9091228735786794442012-02-01T17:21:00.001-06:002012-02-01T17:24:44.178-06:00Remission .......this different placeSeveral blogs have been written lately by the Myelomaville People (that group of people that are either "victims" of MM or are caregivers of those victims) about Remission, and the affect on them, or their patient. Lori Puente, a good friend, designer and weaver of beautiful scarves, great blogger, (<a href="http://www.loripuente.com/" target="_blank">Riding the Wave</a>), and expert caregiver on this journey for several years, with much valuable information, had a quote on her blog recently that "remission is an awkward place". I had never thought about it in that light ......but I realized, after reading her post, that's exactly how it is.<br />
<br />
We, as the caregivers don't actually know what to expect, and I daresay the patient does either, during that time. There are several different definitions, on the web, for remission. The one that I seem to connect with, the most, is from Wikipedia. Strangely enough, it's under the definition for "Cure", and remission definitely does not mean cure.<br />
<div class="luna-Nested"></div><div class="luna-Nested"></div><div class="luna-Nested"><br />
A <b>remission</b> is a temporary end to the <a href="http://en.wikipedia.org/wiki/Medical_sign" title="Medical sign">medical signs</a> and <a href="http://en.wikipedia.org/wiki/Symptom" title="Symptom">symptoms</a> of an incurable disease.<br />
<br />
I would agree that remission can be a temporary thing, but I'm not so sure it means an end to<u> </u><br />
<em><u><strong>all</strong></u> </em>the medical signs and symptoms. And, that is why remission is an awkward place. Remission, in our house, has not meant an end to fatigue, or pain, or feeling bad. Remission hasn't meant being back to "before cancer normal". I finally know what others, on this journey much longer than we, mean by the "new normal". The "new normal" is doing whatever one is able to do.<br />
<br />
The "before cancer normal" was being able to play 54 holes of golf, in one day. The "new normal" is unable to play golf. The "before cancer normal" was always being able to drive. The "new normal" may not be able to drive. The "before cancer normal" was able to walk long distances. If the "new normal" walks even as much as one-half block, he's in tremendous pain. The "before cancer normal" got up very early every morning, went to his shop, and worked at least 8 hours. The "new normal" sleeps later and on days he's able to go to his shop, he may only be able to work 2 - 4 hours. The "before cancer normal" could lift anything. The "new normal" isn't supposed to lift over 10 lbs. The "before cancer normal" loved road trips. The "new normal" is unable to ride long distances. <br />
<br />
My honey was first deemed to be "in remission", in April, 2011.....exactly six months after he had been diagnosed with MM. Looking back, I think it was probably only "partial remission", because all his numbers weren't good, and he relapsed after less than 3 months. He was devastated. He knew that there isn't a cure, but I think he thought it might just "go away". <br />
<br />
I've often written how he isn't always good about sharing how he feels. But after 15 months, I've learned to read the signals. He may not tell me, but on those days when he stays in his pjs, or is resting on the sofa most of the day......I know it isn't a good day. And when he needs more of his "little white pills" in order to endure the pains, in his back, I know it isn't a good day. <br />
<br />
After just two cycles of Revlimid he's once again in remission. This time, all his numbers are great, and I believe he's in 'Complete Remission' or, as his onc. states, "Clinical Complete Remission". Meaning that all his simple blood tests are good, but no Bone Marrow Aspiration has been done. He's living a "new normal" kind of life on the days that he is able.<br />
<br />
I resist allowing my mind to wander to the time when he may relapse from this period of remission. I'm living my own kind of "new normal" as a caregiver, medical researcher, pill giver, cheerleader, and optimist. Remission is definitely a different ......awkward place, but I'm so glad we're there.....for a little while, anyway.<br />
<br />
</div>Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com8tag:blogger.com,1999:blog-7581343569425944386.post-74498100549749852992012-01-22T16:50:00.000-06:002012-01-22T16:50:21.838-06:00This is how it goes.....I check the blogs of several other Multiple Myeloma caregivers, and patients, and in doing so realized that I hadn't written anything in almost a month. That's good! Means that things are really pretty quiet on this MM front. <br />
<br />
My honey finally recovered from the maladies that were plaguing him.....and it's evident by the fact that he's getting bored. He's ready to get back out into his shop. I've been pretty successful in getting him to wait until the weather is better and those shop doors can be open to allow the dust and fumes to escape. (No more pneumonia or bronchitis needed!)<br />
<br />
Last week, our Gorrell RV Park was open for business and Sam and Ann Greco, friends for many years, came and spent the week with us. We always have a good time sharing the cooking chores and playing cards (Pegs 'n Jokers), at night. Finally, it was like old times ....... with Bob feeling good (B/C).<br />
<br />
On Friday night, we had our first night out in many months. For Christmas, our PA daughter and her family had given us tickets to a Kenny G concert at the Beau Rivage, in Biloxi. We spent the night at the Marriott Courtyard. I'm the primary chauffeur, and I had no interest in a 2 hour drive home, late at night. It was a wonderful concert.......and made me feel like things were almost "normal". My honey now walks slow, can't do a lot, but we were "out and about"! (Went to 'Mikey's on the Bayou' in Ocean Springs and had delicious Gumbo and Shrimp PoBoys.)<br />
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Maybe we did too much. He hasn't felt very good the past couple of days but this is really how it goes, at our house. One day we're up, and the next we're down, even though his numbers still look good. <br />
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I think this is just how it goes.......with Multiple Myeloma.Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com5tag:blogger.com,1999:blog-7581343569425944386.post-14503928187966039912012-01-04T23:57:00.000-06:002012-01-04T23:57:07.316-06:00Finally, the end is near.......From the Friday before Christmas until now......"we" have been dealing with Pneumonia/Bronchitis. My honey spent one night, in the hospital, and I think the IV fluids/antibiotics did wonders to help turn him around and begin to get better. He isn't great about "sharing" information (I'm still searching for that class in ESP or mind-reading), but when you've lived with a man for over 50 years, you begin to be able to read some of the signs. He's talking more, and it doesn't seem to hurt so much when he gets up out of a chair (lungs are getting better). <br />
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He was supposed to use the Isometer every hour that he's awake .....and I'm just sure he's been awake for more than 2 - 4 hours in a day.....but that's about how much it has been used! I'm not sure why he hates that little device so much - but he does. My "Hester" stubborn streak (one of the things I inherited from my mother) appeared, and I decided that he is an adult.....knows he needs to do it.....so I'm not saying a word!! Thank goodness, he's getting better without it. <br />
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His appetite is non-existent and food makes him nauseous. This isn't anything brought on by the Bronchitis, so it's probably a side-effect of one of the antibiotics. Thank goodness, there are only a few days remaining. We're currently on an oatmeal, grilled cheese sandwiches and chicken noodle soup diet. <br />
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If he HAS to be sick, winter is such a good time. It's a great time to stay indoors - lots of pajama days in front of the fire. How miserable it would be if the weather was good, and he didn't feel well enough to be oustide.<br />
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Now, not that I'm a pessimist, but I have to wonder.......what's coming next? We're finally nearing the end of this Pneumonia/Bronchitis thing......and I'm just hoping that there's nothing else planned (God's plan) for him, in the near future. Dear God....please let him be well, for a little while.Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com9tag:blogger.com,1999:blog-7581343569425944386.post-44916505970592917142011-12-26T22:07:00.000-06:002011-12-26T22:07:37.704-06:00An unwelcome surprise....againMy honey had been doing great - working in his shop, building beautiful Christmas gifts; oak serving trays, and oak hand mirrors with beveled glass. On Friday, December 2, he sat again in the Cancer Center....for almost 5 hours .....getting his monthly Zometa and IVIG infusions. The Zometa to strengthen his bones and the IVIG to boost his immune system.<br />
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Just 3 weeks later, on a Wednesday, he felt great. The next day, he didn't feel so well and by Friday (a couple of days before Christmas) in spite of the IVIG infusions to boost his immune system.....he had pneumonia, again. <br />
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We were in the Cancer Center and Dr. H. came into the waiting room to listen to his chest. He prescribed what I called "high-octane" antibiotics (2,500 mg. per day) and didn't think he needed to be in the hospital. <br />
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The kids weren't coming home this year, since the girls have been here several times to help when their dad has been in the hospital, so we've had a quiet Christmas (which is really what he needed).<br />
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I questioned why the IVIG would not have prevented this, and I was told if he had not had them, it might have been worse. He still doesn't feel good. His lungs hurt when he moves, or takes a deep breath, and his throat is sore .... but he isn't anywhere close to being as ill as he was in October, when he had to be helped from the bed to the bathroom.<br />
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Because the kids weren't coming home, I had made an "executive decision" not to put up the Christmas tree. It was very hard for me to do, alone, and Bob was unable to help. I had searched, without success, for a table top Fiber Optic tree, and finally decided this house would decorate.....without a tree. After he got sick, and my mind began to have those thoughts that one should never have, I decided that I needed to put up our tree. Mind you, this was just 2 nights before Christmas.....but in days of old, trees were put up and decorated on Christmas Eve! <br />
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So, on Friday night, after my honey went to bed.....out to the storage room I went (ignoring the fact that the Bobcat, or Panther, of Cohay Creek might be lurking). I told a friend, "I'm sure God has His hands full just trying to "redirect" my decisions". First, I couldn't get the storage room door completely open, and second there was no light. Needless to say, with all the obstacles there was no way the tree would get from the storage room to the living room. In the end, I think I was happy that God, or fate, had intervened. <br />
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As it turned out, we didn't need a tree. It was a quiet, peaceful Christmas Day at our house. And, I continue to be thankful for each day....and hope there will be many more.....days.....and Christmases. Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com7tag:blogger.com,1999:blog-7581343569425944386.post-13461996735881382942011-12-01T21:55:00.000-06:002011-12-01T21:55:20.823-06:00Have I told you?I began this blog as a way to release the fear that seemed to seep from every part of my body after I learned that my honey had <a href="http://en.wikipedia.org/wiki/Multiple_myeloma" target="_blank">Multiple Myeloma</a>. It has often become my way to lighten the read, and the journey, by retelling the sometimes humorous antics that can occur with us. I often add medical data, notes and photos, as they've applied to my honey, whenever I feel that other MM patients, or their caregivers, may benefit from the information. Very seldom, if ever, do I delve deep into the medical field. I leave that to those who have been around this cancer longer than I, and are more knowledgeable bloggers like <a href="http://margaret.healthblog.org/" target="_blank">Margaret's Corner</a> or <a href="http://multiplemyelomablog.com/" target="_blank">Pat Killingsworth</a>, or the MM Specialist like <a href="https://www.facebook.com/permalink.php?story_fbid=272805682771972&id=100001276285044&ref=notif&notif_t=feed_comment_reply#!/myelomadoc" target="_blank">Dr. James Berenson</a>, and so many others.<br />
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Often, when things aren't going well, when the pain feels as if it's ripping at my heart and tearing at my soul, I allow my feelings to pour onto the paper like water poured from a pitcher. As I wrote, in one of my first posts, it's okay to cry ......and it's okay for others to know that you cry. I have laid open my heart, and my soul, for all to read and understand how this terrible disease has affected me, and our family. <br />
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We who live with Multiple Myeloma live for each day and for a cure, but we also exist in reality. We know that life can change in a second. We are excited and can experience joy in the smallest of things - like an M-Spike (monoclonal protein) that has dropped even a tenth of a degree (it should be zero). On days when our loved one awakens, with a smile, and says "I feel good", it's as if a blessing has been bestowed on us. We love those days when things go so well that we can "almost" forget they have cancer. Those are the days when we turn our eyes heavenward and say "Thank you, Lord".<br />
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There are also those days when their pain is so unbearable that each step takes their breath away. Those days when we want to question and say "Why him, Lord?" Those days when the pain doesn't allow them to move, once they are settled and comfortable. Those days when you hear them whisper, "I don't think I can take this anymore." Those are the days that bring tears to your eyes, and a lump to your throat, and the days when I beg "Lord, please let me have him for just one more day." <br />
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Even though our numbers are spread across this United States and many countries of this world, we don't fight our battles alone. We have forged friendships through the many avenues made available to us on <a href="http://www.myelomabeacon.com/" target="_blank">The Myeloma Beacon </a>, and the <a href="http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MYELOMA&" target="_blank">Multiple Myeloma Support List at Acor</a>, the responses in the forums on these websites are remarkable. <a href="http://www.themmrf.org/" target="_blank">The Multiple Myeloma Research Foundation </a>, founded by Kathy Giusti, herself a victim of Multiple Myeloma, is a non-profit organization which is not only leading the race in donations to find a cure for MM, but is educating the public about this terrible, incurable disease. And, of course, Facebook has forged friendships worldwide........strangers who have become friends, because of MM.<br />
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Two years ago, I knew nothing about Multiple Myeloma and the devastation and heartbreak it brings to families. I had no knowledge of Velcade or Revlimid or Dexamethasone. What were bone lesions? And, how painful could a compression fracture be? I didn't realize that pneumonia, or kidney failure; or something simple, like a sinus infection, could bring almost instant death.<br />
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This holiday season seemed to be hard on those with Myeloma, and for that reason I chose to write this blog. We become friends and soulmates because of the lot we've been given, and four of those friends did not make it through this holiday. There are those, with MM, that have lived for years.....and then, there are those, that God chose sooner. Each patient, each treatment is different. Why one lives longer than another, is yet unknown. We are only happy for the days we've been given, but we constantly pray for many more.<br />
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Gene Autry wrote the first version of this old western song, and over the years even though the lyrics have been changed by other vocalists, the meaning remains the same.<br />
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<em><span style="font-size: large;">Have I told you lately that I love you?</span></em><br />
<em><span style="font-size: large;">Have I told you lately that I care?</span></em><br />
<em><span style="font-size: large;">Have I told you lately that I need you?</span></em><br />
<em><span style="font-size: large;">Well, darling I'm telling you now</span></em>.<br />
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It doesn't matter if you have Myeloma, or if you're fit as a fiddle.....it just never hurts to say........"Have I told you lately that I love you?" <br />
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And, most important, "Thank you, Lord, for another day."Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com8tag:blogger.com,1999:blog-7581343569425944386.post-87327345140590134042011-11-27T21:07:00.000-06:002011-11-27T21:07:21.514-06:00A lack of confidence ......(Part Two)Ever since Bob was diagnosed with cancer, his bones are pretty weak, he isn't very stable; which means that I'm left to do many of the heavy things around the house. If we take a trip, I load the car. If we end a trip, I unload the car. And I've almost grown to hate the RV, because it's like moving from one house to another. <br />
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And, because his reflexes aren't as good as they once were, I do the majority of the driving. His driving stints have been limited from home to town (4 miles) or maybe to Laurel (18 miles). Until this trip to Texas (this Thanksgiving), when we stopped to get gas. I came out of the station, from using the "necessity room" and there he sat, under the steering wheel - just grinning.<br />
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I said "Are you sure you feel like driving?" "Wouldn't you like for me to continue?" To which I received "Yes, I'm fine." and "No, I can do it." Did I think he was going to bound out from under that steering wheel and let me take over? No, but I certainly prayed that he would. We merged back onto I-20, headed west, with me sweating as profusely as if the western sun was baking me. Needless to say, it was a good case of nerves - mine.<br />
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After about twenty minutes of silence (mine). other than the deep sighs (mine), there wasn't a sound of noise in the car ......other than the rub-a-dub-dub when he'd go from one lane to the other and linger on the caution bumps between the lanes. He was "fiddling" with the gadgets, on the dash, trying to get everything set to his specifications, and I was watching the interstate with eagle eyes (just as if I was still in charge of the steering wheel) and clinging to the door handle with a deathlike grip. I'm not sure what good I thought either action would produce.<br />
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He'd get a little too close to one lane, or the other, and I'm sure the veins in my hand looked about to burst as I gripped the door. I was literally sitting on the edge of the seat. He lingered too long (or so I thought) on the rub-a-dub-dubs and was getting (or so I thought) too close to the 5th wheel in front of us. I'm not sure if I let out a "monumental sigh", or made a comment, but whatever I did, I soon found myself back under the steering wheel, with a very unhappy passenger! Now, how we got from me being the passenger to me being the driver shall forever go unmentioned. Let's just say, it wasn't a pretty sight and there were some words spoken (his). <br />
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We did drive for many miles in unspoken silence, but by the time we got to Texas, we had mended our fences. A couple doesn't stay married for 50 plus years without learning how to give and take. But admittedly, I had already begun to worry about that long drive back home. Who would sit under that wheel? Not that I'm the Danica Patrick of drivers (gotta' know NASCAR for this to mean anything), but I've been in control of the car for so many months - it has just become "my thing". <br />
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God does work in mysterious ways. We were in Texas less than 24 hours when I had a major head problem; blacking out and so dizzy I could have been a blonde (sorry, girls). Having had two cousins with malignant Glioblastomas, the thought crossed my mind that I could be in real trouble. However, a couple of trips to an ER, an overnight stay in the hospital, a CT Scan and an MRI proved there was nothing major going on in my head (I know there are many of you who are grinning and thinking "knew that all the time"). It was just a severe case of Vertigo (Inner Ear issues). We were advised that Texas should invite the Gorrells to stay a few more days, since my honey is unable to drive the entire distance. I probably wouldn't do any better than he did in keeping the car between the rub-a-dub-dubs. Nor did I feel like I could be in control of anything, especially a car! (Side note: For the first time, in years, I didn't have to cook Thanksgiving dinner!)<br />
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So after a few days rest, between the two of us we'll try to get this car, us, and everyone else on the interstate, back on home territory unscathed. And, I wonder if my honey will be as concerned about getting in the car with me, as I was with him. Yes, God really does work in mysterious ways. I'm so glad He allowed my dizzy spell to happen while my feet were on the ground rather than under the steering wheel.<br />
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Still working on building that sense of confidence! Stay tuned for "Lack of confidence .....Part Three"Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com7tag:blogger.com,1999:blog-7581343569425944386.post-1315294762154797542011-11-19T15:59:00.000-06:002011-11-19T15:59:48.590-06:00A lack of confidence (mine).....About the first part of August, 2010, my honey closed up his shop. For years, he had designed and built cabinets, woodwork, furniture, mirrors - almost anything one could imagine; he could draw and build. His shop contained every type of power tool imaginable.<br />
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We were going to celebrate our anniversary and then take a long trip, in our RV. When we returned, he'd reopen his shop and go back to his building. Little did we know that fate had other plans. MM intervened and the shop continued to be silent until the first part of this week, over a year after it had been closed.<br />
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Before retiring, I was a software consultant and a road warrior. I traveled, for my job. My work week usually began on Sunday night when Bob would drive me to the airport, and I would fly out, and it ended on Friday when I flew back in. For almost twenty years, that was our routine. And while I was away, Bob's work continued in his shop ......without me.<br />
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Not until this week has he felt well enough, or been well enough, to even think about plans and wood and tools. And truthfully, I was always concerned that the wood dust (he never wore a mask), or the glue, paint or paint thinner might, in some way, have contributed to his cancer.<br />
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When he began to start flipping through the pages of his Woodworking Magazines, my heart swelled. I knew he was beginning to feel well enough that he was "itching" to get back to his tools and the wood. A love of building had been inherited from his grandfather and his father. It was in his blood and strangely enough, that's where his cancer is.<br />
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This week he opened the shop and for the first time in over a year, the sounds of the saw, and sander, and planer emanated from the shop. How wonderful! But little did I know how skittish I would be about him returning to something that he had done for years......without me being around.<br />
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Never before had I felt the need to go and sit in his shop, while he worked. I had never "hovered". But now, it was almost as if I HAD to be there......watching over him. I found myself telling him to "be careful", and worrying that he would get too tired. He hadn't been out of the hospital but a couple of weeks, and before that he'd pretty much been a couch potato. Was he really strong enough to do this? He had been working with power tools for years, but I found myself actually being afraid that he would cut himself. (Kept that little bit of news to myself!)<br />
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I had been a big proponent of him getting exercise, getting up out of his chair, doing something.....and now that he was, I was worried. Was he doing too much, too soon? <br />
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He finally told me that I was acting like a "mother hen". He was trying to get back to normal - his kind of normal. And, I needed to do the same. I just had to have confidence in him, and his readiness to do this.<br />
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I was happy that he was building up his strength, and that the pain in his legs was becoming less frequent - which meant that his need for pain medication was also becoming less frequent. He also knew that he couldn't take pain meds and work with his power tools.<br />
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He had confidence in himself and his ability to return to normal .......now, I must work on my confidence, and in the fact that he really would be okay among those saws, and sanders, and planers! I'm working on my confidence ..... even if it takes valium to do it!!! (Just kidding!)Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com4tag:blogger.com,1999:blog-7581343569425944386.post-90549592114559532162011-11-17T17:00:00.000-06:002011-11-17T17:00:35.147-06:00Smoking, Liquor or Myeloma.....So much has been written lately, on Multiple Myeloma websites, about potential breakthroughs into the mystery of MM. The cause of this incurable type of cancer is unknown, but it has been mentioned that it "could be" caused by Pesticides, Herbicides, Petroleum based products, Wood Dust, and/or Agent Orange. (My honey has been exposed to all except Agent Orange.) <br />
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Of course, no one really knows the reason for MM......but it has also been stated (by New Zealand researchers) that people raised on Livestock farms may be more susceptible to blood cancers (of which Multiple Myeloma is one). <a href="http://www.medpagetoday.com/HematologyOncology/Hematology/27796">http://www.medpagetoday.com/HematologyOncology/Hematology/27796</a> (My honey wasn't "raised" on a livestock farm; but he was a livestock farmer. So, are our daughters in danger?)<br />
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And then there's Dr. Bradner, of the Dana-Farber Cancer Institute, who helped to create a hybrid molecule which has been named JQ1. This molecule is thought to attack the cancer cells and make them become normal (I'm paraphrasing and stating this in layman's terms). Mice (not sure if they were The Three Blind, or not) were injected with Myeloma cells and then the hybrid Molecule. The mice that were injected lived, mice that were not injected with the Molecule JQ1, died. Dr. Bradner shared his findings with 40 labs, in the US, and 30 in Europe - many of them pharmaceutical companies. Hopefully, this will soon be turned into a pill and can be tested in humans. Amazing! The possibility of an oral drug which will make a cancer cell think it's a normal cell! <br />
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<a href="http://www.ted.com/talks/jay_bradner_open_source_cancer_research.html">http://www.ted.com/talks/jay_bradner_open_source_cancer_research.html</a><br />
(The transcript of Dr. Bradner's talk can be found on the right-hand side of the page.<br />
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Vaxil, a drug company in Israel, is in the process of developing a vaccine <a href="http://unitedwithisrael.org/israel-develops-cancer-vaccine/">http://unitedwithisrael.org/israel-develops-cancer-vaccine/</a> and testing it against MM. This vaccine is supposed to treat cancer, and keep it from returning. Of course, this will have to be approved in the US by the FDA, and go through clinical trials here in the USA. Admittedly, it's a long way out........but perhaps there will be hope for someone, somewhere down the line.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUnYQPhYdrGK93YnqmUrCsojOQIXsI2Nut3Ogx1S4xvkqReTzAqQFIgqDIanEIfUjLO7jJPksomArPGYGN5qf0zbQhgCOoe6g5d13u6FFNYhyi4IjsysaREqCJq4LrT_Z3c5qaaXTkUZU/s1600/Rhubarb.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" hda="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUnYQPhYdrGK93YnqmUrCsojOQIXsI2Nut3Ogx1S4xvkqReTzAqQFIgqDIanEIfUjLO7jJPksomArPGYGN5qf0zbQhgCOoe6g5d13u6FFNYhyi4IjsysaREqCJq4LrT_Z3c5qaaXTkUZU/s200/Rhubarb.jpg" width="200" /></a></div>Rhubarb, a plant typically grown in cooler climates (Midwestern and Northern states in the spring) has a compound Bipterostilbene which seems to significantly inhibit proliferation of myeloma cells and has been said to EXTERMINATE myeloma cells. <br />
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<a href="http://ash.confex.com/ash/2011/webprogram/Paper42196.html">http://ash.confex.com/ash/2011/webprogram/Paper42196.html</a><br />
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The plant stalk, which is very tart, is the only edible portion since the leaves are toxic. Usually, the stalk is combined with strawberries (Strawberry Rhubarb Pie or Strawberry Rhubarb Jam). The Chinese have used rhubarb, for centuries, as a laxative. I wonder how prevalent Multiple Myeloma is among their people?<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHfEVnzapssijn-bG5RjXKPw2OQEbWYQ2B-I0D5GsbTzoKqYLbLeOcg5IVzi_o2aa-O6vvG1GOFtJ0llIKcwi2AYarFFG53jrFtE16IQ8YqA4zEqJoKOHDpjjnTXRSAYHmUuRNH7ufJs8/s1600/plums-prunes.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" hda="true" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHfEVnzapssijn-bG5RjXKPw2OQEbWYQ2B-I0D5GsbTzoKqYLbLeOcg5IVzi_o2aa-O6vvG1GOFtJ0llIKcwi2AYarFFG53jrFtE16IQ8YqA4zEqJoKOHDpjjnTXRSAYHmUuRNH7ufJs8/s200/plums-prunes.jpg" width="200" /></a></div>A Florida State University Researcher has discovered that eating dried plums (prunes) helps to prevent fractures and osteoporosis. <br />
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<a href="http://www.sciencedaily.com/releases/2011/08/110818093048.htm">http://www.sciencedaily.com/releases/2011/08/110818093048.htm</a><br />
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The testing was performed on two groups of postmenopausal women, but eating this fruit can't hurt MM men, either. And, it was believed that eating the fruit even reversed some of the bone loss. My honey isn't much of a "prune fan" but think of the "other" benefits (no laxatives needed)!<br />
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My favorite article was on the website <a href="http://www.medpagetoday.com/">http://www.medpagetoday.com/</a> where it was stated that smoking and drinking liquor appears to "reduce" the risk of Multiple Myeloma. <a href="http://www.medpagetoday.com/clinical-context/MultipleMyeloma/29308">http://www.medpagetoday.com/clinical-context/MultipleMyeloma/29308</a> Thankfully, since I don't smoke (and don't intend to start) it seems that liquor has the greatest benefit. My honey has always been a teetotaler, so everything I said in the first paragraph just goes down the drain. It wasn't the pesticides or herbicides or wood dust or petroleum based products (paints and paint thinners) - it was his not drinking that caused it! I'm now sure if he'd taken a snort every now and then, we wouldn't be facing this problem!! Of course, this study didn't reveal how many of the smokers ended up with lung cancer, or how many of the drinkers became alcoholics. They just didn't have Multiple Myeloma!<br />
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Molecules, Vaccines, Rhubarb Pie, Prunes, Liquor......if it isn't one thing, it's another. Just never know what may be coming down the pike and what might work. But please excuse me while I put my computer away and go get my glass of wine. If liquor works, I'm sure wine does, too!!Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com9tag:blogger.com,1999:blog-7581343569425944386.post-28645279472571442172011-11-12T14:54:00.001-06:002011-11-12T14:56:40.672-06:00Changes and Surprises.....among the colors<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="480" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb8PMw3srXW6VVjg0iT3Rd-rH8u1qj2O-Qn_7FkVbGlWn4lbIwM-A7FuF95XaaqhzW8e1tw2C-ustHnMxdqZrFaZTB3QzZqRLXm8oyRoVOjEl5QKPyUCTid90BNAord76nAnhyOV0NgBw/s640/DSC07293.JPG" width="640" /></div><br />
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Thursday was another "trip to Hattiesburg" kinda' day. On the drive back home, the brilliant afternoon sun shining from a cloudless sky, made the beautiful changing colors of the trees appear even more vibrant. The brisk fall wind, sent leaves floating across the highway. As I drove while Bob napped, the words rushed around in my head ...... just like the leaves rushing toward the ground. Sentences wanted to flow so badly, from my head to my fingers......but those fingers were otherwise occupied with a steering wheel!<br />
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It was a day of change. Long before Bob was diagnosed with cancer (that's how we now define our lives.....before cancer, or after cancer), we had both discussed the need to find a new family doctor. And so, after his diagnosis, that's just what we did. We later learned that we'd chosen a doctor without hospital privileges (the doctor's choice). I was concerned that he did not do hospital admits, and of course, no hospital visits. How could he stay up-to-date with my honey's needs and progress? So today we changed, again....to a doctor who specializes in Geriatrics, and has hospital privileges, and had attended him in the LTAC unit.<br />
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I was impressed that this new doctor didn't send in a nurse to ask all the questions - which usually must then be retold to the doctor. He came in and checked his B/P (which was low) and listened to his chest. And, he said that honey's lungs no longer sounded like a "bowl of Rice Krispies" (I may never eat those, again!). He wrote an order for blood work to try and determine if the pain in Bob's thighs is caused by a loss of muscle mass. And, he wrote an order for a Chest X-ray, just to ensure that his lungs are really clear. <br />
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At the hospital, while providing information for Bob's chest x-ray, there was a discussion about drawing blood, and I commented "Bob's lucky, he has a port". Lucky?? Really, did I just say that? He has a port, because he has cancer. It probably wasn't the best choice of words, but at least he doesn't have to get stuck everytime.<br />
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Our day, at the Cancer Center, ended with a most wonderful surprise. We have two burgundy Multiple Myeloma car magnet ribbons, ordered from <a href="http://www.choosehope.com/">http://www.choosehope.com/</a>, on the back of our car. I didn't notice that a car had followed me into the parking lot, but I soon saw a face that I thought I recognized. It was the daughter of another Multiple Myeloma patient. She had followed our car, because of the ribbons. We had spoken, months earlier, when her dad was just beginning his treatment.....(and our wonderful Dr. H. is also his doctor). I had often thought of her dad, and wondered how he was doing, but had not seen him at the Cancer Center on the days we were there. As many of you know, I'm such a believer in "God puts us where we need to be....when we need to be" and "things happen for a reason". I'm not sure why Lee Anne and I reconnected, but I'm so happy we did. She is so warm and has the sweetest smile......and her dad is in my prayers. (And, she now has MM car magnets on the back of her car!)<br />
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A day of change and pleasant surprises amid the beautiful fall colors.Anonymoushttp://www.blogger.com/profile/18287410826256587335noreply@blogger.com8