Friday, September 30, 2016

Birthdays and Anniversaries

Today should be the one year anniversary of our new house move-in day. "New House" is a strange term because we had never owned a new house, before.  So this is a remarkable achievement for us. We were not considering purchasing a new house in our Texas destination but after looking at many resales on the market in our target areas, the new house option became a reality. We have enjoyed the look, feel and smell of our house.We are where we are because of my health. This was necessary in our hearts and minds. We also love being close to The Paul's (Sarah, Ryan, Cason & Claire). If not for them, I doubt we would have been able to see clearly what they saw coming several years ago; Not me getting sick, but our relocating to be closer to them. Getting sick just expedited the decision. Yesterday, I learned my bone marrow aspiration test revealed a "blast" count of only 1%. This means bone marrow remission, good news. Monday, I begin the 3rd cycle of the chemotherapy treatments, three consecutive days of IV and five days of injections, the same as was done last cycle.  This is sometimes known as rescue or maintenance chemo. It is not intended as a cure or a long term solution, rather maintaining my survival for longer, more enjoyable times to come. I will see Dr. "K" on Wednesday afternoon for more evaluation and update on future plans.

So Janine and I get to celebrate her birthday again at MD Anderson with her holding onto me while we share my trials and her great strength. We will also share our 45th Wedding Anniversary on the 9th of October " sickness and in health....".

Saturday, September 17, 2016

What's Next?

Yesterday we met with Dr. Kadia for my regular appointment. It had been three weeks since my last meeting with him, but well over a month since Janine was in the doctor's office because she was back in Meridian during the funeral and celebration of her mother's wonderful life. Our time with him and with Alexis, our favorite PA, was mostly about future plans. We were wanting a better understanding from the "team" about the plan for my treatment in the coming weeks and months, the short term goals. Specifically, we hoped to find out if the current chemo treatment could be sustained for many more cycles and/or if we were still preparing for a stem cell transplant In the near future. Always in our consideration is the stem cell transplant, the only known cure for my MDS condition. Success rates of 5O% or less and the very costly and difficult recovery process make this a hard decision. Right now there are no other good "miracle" drug trials available and nothing on the horizon that gives us hope other than maintenance through more chemo or taking the transplant plunge. 

Also we expressed our need for a "vacation". This chemo process and the frequent labs make getting away for anything longer than one day almost impossible. Dr. Kadia agreed we can suspend treatment in between cycles for about a week to ten days provided my counts respond favorably to this current cycle. Not that we plan to cruise the Caribbean or the Aegean Sea it would be nice to get away for a beach trip or early fall Carolina mountain retreat.

Last month Janine snapped this picture of me lying in bed while I was getting a blood transfusion. The multicolored blanket is the focal point of the picture. Our friend Susan Sumrall crocheted this beautiful gift for me and it has been my favorite companion for the past 30+ months. Everywhere we go it draws positive comments from friends and strangers alike who share in our medical journey. It is more than a traditional security blanket because I get quite cold when recieving treatment. The warmth and comfort of a blanket is a small convenience while the love and healing that comes from our connection to our church friends is symbolized by Susan's colorful offering. Thank you Susan, Briarwood, WCPC and the hundreds of friends, family and friends of family who are connected to us in prayer and loving encouragement.

Thursday, September 8, 2016

Conventional Chemotherapy

Today, Thursday 9/8/16, is day 11 of the second cycle of chemo treatments. That is 11 days since the start of round two. That round took 5 and a half days so I am 5 and a half days post treatment. Confusing, but that is how they count the days from the start not the end. So far no pneumonia. My white cell counts took a dive to 0.4 yesterday but the hemoglobin (red cells) and platelets were good. It is common for white cell counts to go down during the first 15 to 21 days so I guess all is normal for now.

We travel back to MDA on Monday, Wednesday and Fridays each week for labs and reviews and with a doctor appointment on next Friday the 16th.  With good counts no transfusions are needed. These are not bad except very time consuming, 4 hours minimum, and less effective the more frequently they become necessary.

We must be very cautious with such low white counts, however. Infections are my worst enemy, now. If things progress well for about two weeks we may see positive results. This is speculation on my part but always hopeful. But for now I have to avoid crowds, sick people, etc. Wearing a surgical mask is the norm when out and about even when uncomfortable for me and those who see me. A touch of feeling discriminated against, I suppose. This is the way it is as we do what has to be done to stay as healthy as possible.

Last year I was lulled into a false sense of security with my remission seemingly steady. Things changed quickly, however when the "miracle drug" stopped working. Then new mutations were identified in my bone marrow which no targeted therapies were available. Therefore, more traditional chemotherapy was needed to kill all cancer cells in my blood and bone marrow instead of trials and treatments which target specific mutations. The problem with this course of chemo is that side effects are more harmful, i.e. infections like ones that cause pneumonia. Also it seems this is more of a stop-gap approach with short term goals. Long-term is to cure my disease that only happens with a stem cell transplant, a risky procedure for me. So we work to get me healthy enough for the stem cell transplant and decide if this is best for me when and if we ever get healthy enough to make that a good possibility.

In the mean time I fight this MDS (leukemia) with whatever is available and reasonable. Prayer still works so all who see this and who have faith in prayer please continue to keep us in your prayers.