Thankful Thursday - Standing in the Gap Friends

Phil Brabbs, founder of CancerKicker.org has come up with a great idea to remind us all to be thankful. He states: "Amidst the cancer journey I am learning that there is an opportunity for a thankful heart to grow." He has instituted 'Thankful Thursdays'. Linda and I think this is a great idea, so every Thursday we will highlight someone or something that we are thankful for.

Today we want to let everyone know how thankful we are for the wonderful friends that organized or participated in the Standing in the Gap Event for us.

When I was diagnosed in January of this year with Multiple Myeloma, I had also just been terminated from my job. I did a quick 'back of the envelope' calculation and saw $12,000+ in medical out of pocket expenses in 2010 and approximately $20,000+ in 2011. Ongoing Cobra expenses, deductibles, prescriptions, special equipment and food, etc. combined to create a significant burden. With that kind of cash need, we didn't see any way we could keep our home. Plans were made to move in with Linda's mom, garage sales were held, car and trailer sales took place, and we liquidated the tools associated with my former remodeling business.

Enter the Stand in the Gap team. Originally an idea birthed by our good friends Patti O'Reilly and Dee Omer, it soon grew to become a huge fund raising event sponsored by our current church Stony Hill Baptist, and our former church Bay Leaf Baptist. Friends gathered, a date was set, plans were put into place, committees were formed, responsibilities were assigned, and people got to work. Longtime friend Shelley Graves jumped onboard organizing the advertising, live and silent auctions, the raffle, and ticket sales. Corey Perrott got a website up and running and many Stony Hillers got to work on the food and bake sale.

The event was held at Stony Hill Baptist Church on July 10th of this year.

It started off with a delicious NC Bar-B-Que dinner complete with homemade desserts prepared by a dedicated Stony Hill team and many volunteers...


The line was out the door....they served 300 meals and sold out in about 30 minutes!


The event included a live auction, a silent auction, and raffles for a beautiful diamond ring, a new 46" Sony Bravia HDTV, a flip-video camcorder and other items, all orchestrated by the friends from Bay Leaf...


There was even live entertainment provided by the Wakefield Five...


The love and support received was tremendous, with over 450 people in attendance...

Linda and I got the chance to say thank you to those that were there...

but would rather have shaken every hand, hugged every neck and said face to face "we can't thank you enough!!!"

The event was a tremendous success. Goals the committee originally set were more than doubled and enough funds were raised to offset medical expenses for the next few years. With that financial assistance, plus the approval of my disability and an adjustment to my retirement plan, we are able to remain in our home.

We just cant say 'thank you' enough. We are especially grateful for our friends from Stony Hill and Bay Leaf Baptist churches that put this event together. We are also thankful for the many friends and businesses who donated items for the auctions, and for all those who came from near and far be a part of this very special evening. We do not feel worthy of such an outpouring, and our hearts will forever overflow with gratitude.

Wordless Wednesdays - The New Mr. Clean

June 2010

October 2010

Great News Today.......

We got some great news today...The results from my blood work at 60 days post transplant showed that my M-spike was at a level that was not detectable (zero)! (Multiple myeloma cells produce excessive monoclonal proteins, also known as M proteins. The M protein level is referred to as the M-spike.) The goal is to keep that M-spike at zero.

We praise the Lord for His goodness, grace and mercy. He has been with us every step our MM journey. Thank you everyone for your love, concern and prayers.

Someone Stole My Feet.........

Has anyone seen my feet? Size 10 1/2 EE. Hard working, never complaining, strong, able, all the toes, etc. I believe someone stole them and replaced them with an inferior set.

The current ones hurt, tingle, burn, some toes don't work, and they are always complaining about something.... sometimes they are so sensitive that pain erupts if anything even touches them while other times the numbing tingling shooting pain is so severe that I am sure that I am sure that I am standing in a fire ant bed. At night they are difficult, not wanting to go to sleep and often waking me up at some very early hour. I often have to hang them off the end of the bed so that nothing touches them. At what point did my feet become spoiled adolescents?

My beautiful caregiver treats them like royalty, applying a special nerve concoction cream every morning and night, putting on extra soft socks, and yesterday even helped me buy some cushy walking shoes.

These feet are definitely not the set that came as original equipment 58 years ago.

So if you are out and about or on the web, please keep an eye out for my old feet. I am monitoring Craigs list and EBay on a daily basis.........

Wordless Wednesday: The Best Medicine

Big Word - Peripheral Neuropathy

Before Ernie was diagnosed with cancer, I had heard this word occasionally from friends who were undergoing chemotherapy. Now we know about it first hand and it's no fun. This is the technical description of what it is:

A disorder of the peripheral nerves - the motor, sensory and autonomic nerves that connect the spinal cord to the muscles, skin and internals organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain. It's course is variable; it can come and go, slowly progressing over many years, or it can become severe and debilitating. However, if diagnosed early, it can be controlled.

Since being on two particular chemo drugs, Ernie has been experiencing neuropathy in his feet. Thank goodness he hasn't had any trouble with his hands. What makes this particularly difficult is the fact that he still can't "sit upright" comfortably, so he does alot of standing and walking. Not being able to completely "feel" ones feet is a scary proposition and it increases your risk of falling. The neuropathy also makes his feet just plain hurt! Yet, this is the one form or exercise Ernie enjoys, and he is gradually trying to build up how long and how far he walks.

There is a compounded prescription I rub on his feet twice a day (even this can either feel funny or hurt) and it might be helping, but it certainly hasn't made it go away. He is also on Lyrica which helps with the nerve pain. This is still a big prayer request for now. Please pray it subsides. It often wakes him up in the night hurting so badly that he isn't sure he can stand and walk on them until he takes pain medication and waits for them to "settle down". I recently attended a seminar put on by the International Myeloma Foundation and heard about a few other things that might help...Mega B Vitamins and Magnesium supplements. We are going to check in to these for sure! Anyone else have a tip or two for us to try?

In spite of the neuropathy, Ernie will often increase his walking to a mile in the morning and a mile in the afternoon which is awesome! And recently, he has begun taking one or the other of our two dogs along, which they love. It's amazing how they seem to know they have to be careful and not pull!

So, now that you've gotten through all my writing and know another big word, I leave you with a couple pictures of EZ enjoying the Fall weather and once again happily walking the dogs!

Ernie and Abby (sitting nicely and looking at the camera)

Ernie and Milo (refusing to turn when I called him)

Fatigue.......

I was warned, "You will be extremely fatigued as the stem cells work overtime to rebuild your blood cells and platelets". They should have said, that from time to time during your days after stem cell transplant you will lose, without prior notice, contact with civilization for extended periods of time. It will come upon you without notice and take you away mid sentence or mid thought and you might regain consciousness after several hours.......

I take naps without warning. Long naps. The other day I slept in until 9:30, got up for breakfast, decided to to lay down for a moment about 11:30 and Linda woke me up at 4pm. "What just happened?" was my only utterance to her.....she said "You crashed and I figured that 4 and a half hours was long enough".........what??

She finds me completely gone with my laptop on my lap, or with my cell phone in hand....gone to this world....exhausted.....fatigued. As a matter of fact, I think I might just lie down for a min..................

Wordless Wednesday - Scary Hair!

Bone Marrow Donor Registry

When Ernie was diagnosed with Multiple Myeloma, Bone Marrow Transplant was immediately mentioned as Phase Two of his treatment. We had no idea what that meant. It really wasn't discussed in great detail until he reached the point, following chemotherapy, that it appeared to be a reality for him, i.e. his body could handle it and his MM was in remission following Phase One.

EZ's stem cells being collected using a process called aphresis...not painful!

As we became educated about the process of Bone Marrow (or Stem Cell) Transplant, we were amazed at how these precious cells are collected and transplanted into the patient...basically like a blood transfusion! Fortunately Ernie's own cells were used for his transplant (autologous transplant), so he did not have to deal with the rejection factor (graft vs. host disease) that so many others face. However, we have met people on our journey who received cells from donors (allogeneic transplant), and that made me wonder what I had to do to become a donor on the national registry. This post is to share with you what I found out.

Here are some important facts that I obtained from the American Bone Marrow Donor Registry.

1. Over 50 diseases can be treated by marrow transplant, including leukemia, myeloma, lymphoma, immune deficiency, sickle cell anemia and aplastic anemia.

2. The odds are 1 in 20,000 of identifying an unrelated compatible marrow donor, and much higher than this for patients of minority heritage.

3. You must be between 18 and 60 years old and have no history of hepatitis, heart disease, cancer or AIDS.

4. Your cell sample is obtained by using a cheek/mouth swab from a kit which is provided for you.

5. A patient's best opportunity to find a perfectly matched donor is from an identical twin or a sibling.

So all you "young", healthy readers out there, would you consider becoming a donor by swabbing your cheek and getting on the registry? Fill out the online form (by clicking the button below) and send away for your kit today. It is painless, and if one day you are notified that you might be a potential life-saving match for someone, possibly your own sibling, you can make the decision as to whether or not you want to proceed with the collection process at that time. Hopefully you would gladly proceed. Those syringes of healthy stem cells are liquid gold, life saving blood, and so needed by patients who would not live without them!

EZ's healthy stem cells!

Love is...

Sending a special card, or a stuffed glow worm...

a hand delivered loaf of warm banana bread...

a brother who took a week off work to do carpentry for us and held babies too...

family members who organized two phenomenal yard sales...

close friends willing to wear silly masks for a visit...

more family members who built a fence for our dogs...

37 volunteers (friends and family) who showed up to work in our yard...

the excitement of a new grandchild on the way...

holding 7 month old grandbabies...

longtime best friends from Florida who bought our Suburban...

60+ encouraging notes from our kids and Mom...

dear friends who worked on "Standing in the Gap for Ernie Baker"...

girlfriends who take time off work and come for lunch...

a granddaughter who grabs your hand and says, "I'll walk with you Grandpa!"

a neighbor (Charlie) who lovingly places our newspaper on the front stoop every morning...

women in Kenya who pray for you with their whole hearts...

a faithful pup who watches over you while you sleep...

a brother in Christ who shaves his head in solidarity...

and nics it in the process (poor Jay)!

friends from way back in 1979 who stop by with hugs for us and gifts for our grandchildren...

grown men who play with those gifts for the grandchildren and make you laugh...

prayers, dinners, gift cards, flowers, lawn mowing, phone calls...the list goes on and on. We are blessed beyond measure. Thank you for your love, from the bottom of our very grateful hearts!