Myelofibrosis

On 6/25/2008 very hopeful wrote:

Hi there again,

When you said sensitive to others, I really feel that what the Lord wants is for us to be there for so many others, not only to pass on whatever research we're learning, but to encouragement. 

That you allowed me to spill my emotions flat out, the anxiousness and worry about losing Allen, as well as being alone then are real fears that so many others have and are scared to communicate.

Sometimes all we need is a person to listen.  It's the Lord's plan to just love.  Many times He places us in trial positions that will grow us, after all, it's in the problem areas that we most grow spiritually.  That Lee and Allen are doing fine, and even looking younger so shows us that by giving out we're meeting His plan for us.  This might even be a ministry onto it's own.

Considering the price of gas now, many are just staying home.  We live in Rochester, New York where it's over $ 4.50 for basic gas!!!   That puts a crimp in everything and for everyone. 

I'm even learning to appreciate Allen more than ever, and all he does daily, from gardening, taking care of his vegetable garden, household chores, even food shopping and cooking right now, and so much more.  Seems he doesn't sit still ever, which is probably good for him.

You and I have great husbands, who WILL live a long time..... 

much love, Arlene

Hi Arlene,

We went to the KU Cancer Center in Kansas City last Friday and Lee's white blood count is beginning to climb again.  We are to go back in 6 weeks and if it continues to climb we will need to go back to MD Anderson.  There were no blasts, which is real good.

Lee keeps really busy.  And I do most of the time.

Good to hear from you!

Take care,

Virginia

Hi Virginia,

Many thanks for writing and letting me know, I'll certainly keep praying for Lee and yourself.  Keeping busy is really the best thing to do, the more time we think sometimes the more our imagination goes off the deep end. 

One question though, what do you mean by blasts?  That's a term I haven't heard yet.

Allen and I had a serious talk recently, actually I forced him to talk about what's on his mind.  Ever since his diagnosis last September, he seems to be annoyed with everything, and as he says it, "I bark".   It took a while to get him to say it, but he said that "ever since they told him about this, he's living under a death threat, a sword".   I tried to ease his mind, but he's a quiet person with deep thoughts.

At least he's keeping really really busy now, gardening, bicycling, and everything else possible, including helping to clear out the house of the clutter that just accumulates throughout a lifetime.  We're also seriously thinking of moving to a ranch house, one floor is more convenient, so this has helped to motivate us to "clear" the stuff.

Virginia, both of you are on my heart.

Arlene

On 7/14/2008 very hopeful wrote:

Hi Virginia,

Many thanks for writing and letting me know, I'll certainly keep praying for Lee and yourself.  Keeping busy is really the best thing to do, the more time we think sometimes the more our imagination goes off the deep end. 

One question though, what do you mean by blasts?  That's a term I haven't heard yet.

Allen and I had a serious talk recently, actually I forced him to talk about what's on his mind.  Ever since his diagnosis last September, he seems to be annoyed with everything, and as he says it, "I bark".   It took a while to get him to say it, but he said that "ever since they told him about this, he's living under a death threat, a sword".   I tried to ease his mind, but he's a quiet person with deep thoughts.

At least he's keeping really really busy now, gardening, bicycling, and everything else possible, including helping to clear out the house of the clutter that just accumulates throughout a lifetime.  We're also seriously thinking of moving to a ranch house, one floor is more convenient, so this has helped to motivate us to "clear" the stuff.

Virginia, both of you are on my heart.

Arlene

Arlene,

The way I understand blasts are the immature blood cells that are produced and sent out into the blood stream.  Because they are immature they lay down in the blood stream and cause the fibrosis.  They are not good to have.

I started clearing out our house last year when I retired.  We have lived here for over 40 years.  I stopped and it is hard to get started clearing out again.

 My husband is very very quiet.  He has not talked about his feelings.

Thanks for being there.

Virginia

Hi Virginia,

Just love it when we're both on at the same time.   So that's what causes this "thing", never had that explained or even mentioned when I researched it.

May Lee, Allen and all the others never have that!!

It took me a while to agree that we should move, the thought of packing everything...  actually, just the thought of looking into all those boxes depresses me.   A good friend once said to me, "pick up the item, remember the memories, hug it, kiss it, shed a tear or two, THEN dump it into the trash bag!!!"   Just explaining that isn't enough, you should see the physical way she said this, makes me smile.  I've been practicing that as a go through these things.

When we asked our daughter, Susan, if she wants anything....  no hesitation, just a strong "No, nothing".  My heart cried a bit that day, but I'm still keeping some things for her, let her sort it out!!

Take care my dear Virginia, many blessings,

Arlene

On 7/14/2008 very hopeful wrote:

Hi Virginia,

Just love it when we're both on at the same time.   So that's what causes this "thing", never had that explained or even mentioned when I researched it.

May Lee, Allen and all the others never have that!!

It took me a while to agree that we should move, the thought of packing everything...  actually, just the thought of looking into all those boxes depresses me.   A good friend once said to me, "pick up the item, remember the memories, hug it, kiss it, shed a tear or two, THEN dump it into the trash bag!!!"   Just explaining that isn't enough, you should see the physical way she said this, makes me smile.  I've been practicing that as a go through these things.

When we asked our daughter, Susan, if she wants anything....  no hesitation, just a strong "No, nothing".  My heart cried a bit that day, but I'm still keeping some things for her, let her sort it out!!

Take care my dear Virginia, many blessings,

Arlene

Arlene,

I like it when we are both on here too.  I have dial-up internet, so I'm very slow at responding.

I guess that I need to throw away more and get at it.  We have two children and I don't want them to have hurt feelings over anything.

I still have a lot of my teacher stuff, (like bulletin board decorations and lots of books).  I know they don't want that stuff, but it took me so long to get it together.  I loved teaching.  I miss being with people.  I really appreciate being able to communicate with you.

Thanks for the "throw away" advice.  I'll try to do that more.

Take care,

Virginia

Hi Virginia,

I'm really enjoying this myself.  If possible, give thought to selling on ebay or Craig's list, I'm doing both myself.  Craig's for now, ebay for the fall since there's no action this time of year.  I'm also donating many things.  It's funny though, the items I think will get the most, usually don't.  And those that I might toss, really sell high.  Never know.

There's also those large bags of clothing waiting downstairs for the charity truck to come!!  Sometimes I feel I'm drowning in "stuff", but I also know the Lord is doing this, so the house gets cleared up.

many blessings Virginia,

Arlene

On 7/14/2008 very hopeful wrote:

Hi Virginia,

I'm really enjoying this myself.  If possible, give thought to selling on ebay or Craig's list, I'm doing both myself.  Craig's for now, ebay for the fall since there's no action this time of year.  I'm also donating many things.  It's funny though, the items I think will get the most, usually don't.  And those that I might toss, really sell high.  Never know.

There's also those large bags of clothing waiting downstairs for the charity truck to come!!  Sometimes I feel I'm drowning in "stuff", but I also know the Lord is doing this, so the house gets cleared up.

many blessings Virginia,

Arlene

What is Craig's List?  I look at the store room and I just want to shut the door and go away.  I guess that I needed a nudge to get started cleaning again.  I really like the way things look when I get rid of "stuff".  We live on a farm a long way from town and not many will come for a garage sale.  I've not done anything on ebay either.  Have you?  If you have is it difficult?

Take care,

Virginia

Hi Virginia,

Craigs List is a free service for posting items for sale.  It's found in most cities now, look it up as craigslist.com, with the www first.  Real easy to understand, you describe the item, give a price with BO (best offer), and wait for the calls.  People will email or call, then if they want it, they will come to you to pick up and purchase it.  It's important to fully describe your time with the condition it's in, any tears, spots, stains, etc., along with great photos.

ebay is just as easy, I've been doing it for many years, however, they recently changed and increased their fees, so I only list items when it's worth it, as fees will eat up 1/3 of the profits!!  But it's great for selling those items you would normally have at a garage sale.

craigs is really popular now because it's totally free, no fees for anything!

I'll be more than happy to help you, just ask away.

The busiest and best season for either service is the fall, especially November for the Christmas season.

I've met so many nice people on ebay, even one of my best friends.  It's a relationship I treasure.

Both services just keep me busy, which on most days is a good thing.

many blessings,

Arlene

On 7/14/2008 very hopeful wrote:

Hi Virginia,

Craigs List is a free service for posting items for sale.  It's found in most cities now, look it up as craigslist.com, with the www first.  Real easy to understand, you describe the item, give a price with BO (best offer), and wait for the calls.  People will email or call, then if they want it, they will come to you to pick up and purchase it.  It's important to fully describe your time with the condition it's in, any tears, spots, stains, etc., along with great photos.

ebay is just as easy, I've been doing it for many years, however, they recently changed and increased their fees, so I only list items when it's worth it, as fees will eat up 1/3 of the profits!!  But it's great for selling those items you would normally have at a garage sale.

craigs is really popular now because it's totally free, no fees for anything!

I'll be more than happy to help you, just ask away.

The busiest and best season for either service is the fall, especially November for the Christmas season.

I've met so many nice people on ebay, even one of my best friends.  It's a relationship I treasure.

Both services just keep me busy, which on most days is a good thing.

many blessings,

Arlene

Arlene,

Sorry, that I haven't gotten back to you.  I didn't get your last message until the next day.  My slow dial up, I guess......

Our grandson that spent the summer with us has returned home.  It is quiet around here.

Thanks for your information about Craigs List.  I now see and hear people talk about Craigs List, but I guess that I hadn't paid attention before you told me about it.  I may ask for help with it.  A fellow teacher's husband sold a car on ebay and almost lost it all.  The car and the money out from the cashier's check.  He didn't feel right about the check and had it check out.  He was a good thing, because it was fake.

It helps so much to be able to talk to you.

You are in our prayers.

Virginia

On 8/4/2008 retired teacher wrote:

 

On 7/14/2008 very hopeful wrote:

Hi Virginia,

Craigs List is a free service for posting items for sale.  It's found in most cities now, look it up as craigslist.com, with the www first.  Real easy to understand, you describe the item, give a price with BO (best offer), and wait for the calls.  People will email or call, then if they want it, they will come to you to pick up and purchase it.  It's important to fully describe your time with the condition it's in, any tears, spots, stains, etc., along with great photos.

ebay is just as easy, I've been doing it for many years, however, they recently changed and increased their fees, so I only list items when it's worth it, as fees will eat up 1/3 of the profits!!  But it's great for selling those items you would normally have at a garage sale.

craigs is really popular now because it's totally free, no fees for anything!

I'll be more than happy to help you, just ask away.

The busiest and best season for either service is the fall, especially November for the Christmas season.

I've met so many nice people on ebay, even one of my best friends.  It's a relationship I treasure.

Both services just keep me busy, which on most days is a good thing.

many blessings,

Arlene

Arlene,

Sorry, that I haven't gotten back to you.  I didn't get your last message until the next day.  My slow dial up, I guess......

Our grandson that spent the summer with us has returned home.  It is quiet around here.

Thanks for your information about Craigs List.  I now see and hear people talk about Craigs List, but I guess that I hadn't paid attention before you told me about it.  I may ask for help with it.  A fellow teacher's husband sold a car on ebay and almost lost it all.  The car and the money out from the cashier's check.  He didn't feel right about the check and had it check out.  He was a good thing, because it was fake.

It helps so much to be able to talk to you.

You are in our prayers.

Virginia

 

Arlene,

I went to a support group at a hospital in Kansas City.  There was a sign at the cancer center about a caregiver support group, so I called the phone number.  She said there was not anyone interested in the group, so she referred me to another hospital that had a support group for caregivers.  The group is just for caregivers, not specific to cancer.

There were three women (including me) at the group.  The first lady to share about her husband talked about his dementia.  Then the second lady shared about her husband who had a rare cancer.  She didn't mention the kind of cancer.  As she was describing his symptoms I wondered if it was myelofibrosis.  It was!  Can you believe that?  He husband was 83 and had been dx for just a year.  That is a God thing.

The group meets once a month, but we exchanged phone numbers.

I've been working in the yard until it get too hot.

Hope everythings is going good for you.

God Bless!

Virginia