2/13/11 Yellow Brick Road

Happy Valentine's Day to all! Here is Sunday and we have been so busy getting everything ready for us to hit the yellow brick road to Houston, Texas. Having not written this blog since Wednesday night has caused some concern with some of my friends so I will try to update what has happened.

Friday was our last visit to Winship at Emory to get his blood tested before we drive to Houston. Joe stayed continuously weak this time after Part B of the HyperCVAD-R chemo. It seems his blood chemistry is out of whack in the areas of magnesium, potassium and phosphorus. Dr. Winton believes that it is because his bone marrow is hard at work developing healthy cells. The amount of supplements Joe takes is like a bag of M & M's. Trying to balance all of it to prevent other side effects is a real challenge. The doubling of the magnesium oxide caused Joe diarrhea which made him miserable. I backed down the magnesium to the original level and added Imodium to the equations which solved that issue to about 75%.

We were delighted to find out the Joe's blood levels recovered enough that he did not need any transfusions on Friday. Our meeting with Dr. Winton and Jessica Neeley was very positive. Dr, Winton stated that he felt that Joe was already in remission but until MDACC does all their tests, we will not have a definitive answer. We also discussed stem cell transplant versus HyperCVAD-R with Rituzan maintenance every few months when the chemo is finished. Winton stated that comparing the two is interesting. They have found that the results of both are similar. He welcomed us to come back to Winship for the Rituxan maintenance after Joe finishes at MD Anderson Cancer Center. I shared hugs with Winton and Jessica while Joe gave a handshake.

Saturday was a very busy day with getting our roof and gutters cleaned, car serviced, picking up dry cleaning. We stopped at Home Depot to get some Weed and Feed for our lawn so hopefully it will stay healthy when we are gone. I use the spreader to spread it since Joe just not have the stamina to do anything like that. My car needed a new power steering hose and a flush kit. The shock came when I found out thathe bill was $736. There was no time to shop it around so we had Dekalb Tire fixed it. The hose had a small hole in it and it was dripping on the exhaust pipe. It was the smell that I had detected when I parked. I had check the oil but it was full and clean so when I had the oil changed, tired rotated, balance and the alignment check, I asked them to take a look at it since I did not want an issue on our drive to Houston.

We had lunch with Mike and Gail at Melton Bar and Tap in Decatur. Gail was recently diagnosed with Primary Myelofibrosis by a local hematologist. The doctor advised them to get several expert opinion and on his list he had; Dana Farber in Boston, Massachusetts; Mayo Clinic in Rochester, Minnesota; and MD Anderson Cancer Center in Houston, TX. Mike had contacted me since I am the MPD Support Coordinator for the Greater Atlanta area. We decided to meet so Joe and I could give them some support and hope. Joe still has Myelofibrosis (MF-3) along with the Mantle Cell Lymphoma. Mike and Gail are teachers and Saturday was Gail's 40th birthday. They had the wonderful charbroiled hamburgers at our suggestion and loved them. What a delightful young couple! Mike is the "Bonnie" of the family where he does all the research and contacts the doctors. Gail does not know much about the disease and wants to wait till they fly to Boston, Massachusetts to see the experts at Dana Farber. They were very impressed how they communicated with Mike frequently and answered his questions via e-mail within 15 minutes. That type of support with doctors will give one tremendous confidence. They will fly up there during spring break on 4/1. They are doing all the right things and I am confident that Gail will get the care she needs.

Eastminster Presbyterian had their annual special service of the "Kirkin' of the Tartans", with bagpipes and a special ceremony of Scottish heritage of so many of our members. I love when the families bring their tartans in on a poke up the aisle with the little children behind the parents or grandparents. They have the various plaids sashes, skirts, ties, bowties and ribbons that represent the various klans. The bagpipe and organ was such a glorious sound with the traditional Scottish Hymns. The church was filled with members and guests since it is quite a special service that is held annually, After the church service the members and guests are treated to shortbread and a beverage. If anyone would like to see this service some day, please let me know and I will notify you the next time that it is held. To hear "Amazing Grace" on the bagpipes and the church singing this great hymn always touched my heart as it does with nearly all of membership.

After church Joe and I head to Tucker to Advance Auto Parts to get my windshield wipers replaced. Joe had purchased the wipers but could not figure out how to install them. The sales clerk graciously came outside and showed Joe how to do it. I no longer have squeaky blades. We stopped for a pizza at Enzos which was so good. Joe headed home and I headed to Dunwoody to get an hour massage at Massage Envy on my neck, shoulder and arm. On the way home I stopped at Nail Service at Northlake to have a full set of Solar Nails, French style which I really needed,. Now they look great. I also had my eyebrows waxed. OUCH! Ah, it was not too bad, really.

When I got home, I started on organizing the paperwork for MDACC and Emory as well as setting up new files. I also had to gather my tax documents so I can complete our taxes while we are in Houston. I also need to do the final estate tax return on Joe's Mom estate. Afterwards we treated ourselves to dinner at Outback which Joe enjoyed so much. When we got home, we got to speak to Keith and his girlfriend via Face to Face on the iPhone which is really cool. Later we got to speak to our two granddaughters to wish them a Happy Valentines. They loved the gift from Joe and me.

In the morning, we will pack our clothes since we are both way too tired tonight. Packing the car will be a challenge and will take patience and get creativity. I got Max's crate broken down and already laying down flat in the trunk. Max is a fantastic traveler.

I will have to see how Joe feels in the morning. If he is still weak, I will take him to have his blood tested to make sure that his weakness is not from the lack of red blood cells.

Our plans are to drive about seven hours on Monday and spend the night in Biloxi at La Quinta Inn which was very clean, great beds, quiet and they allow pets. It is about 408 miles just about the halfway point to Houston. The weather forecast is clean and warm temperatures thus making it a great day to drive.

Ciao!