Category: Personal Experience

Still an interesting ride! I start my second monthly round of maintenance chemotherapy tomorrow – 5 consecutive daily subcutaneous injections  of Guadecitabine. The first round earlier this month wasn’t terrible, but it did seem to adversely impact my energy and fatigue levels. I am hoping side effects will diminish over time. I had my central venous catheter (CVC) removed last week – a big step toward achieving some level of normalcy. I am trying to step up my exercise regiment to thwart off tiredness – started walking twice a day this past week, and rode my bike outside for the first time today since I was diagnosed with AML. Rode 5.6 miles.

It has been 81 days since my stem cell transplant. On May 13, 2019 I will have a consulting “survivorship meeting” with MDA personnel to discuss what my “new normal” will be. I am hopeful that every new day will bring improvements in my stamina and energy level. I am also hopeful that I will be allowed to start traveling again some time in June.

Your continued thoughts and prayers bring me great strength. I am very grateful for my loving family and caring friends who continue to keep me positive and moving forward.

Yours in Christ,

John L.

Blessings and answered prayers continue.

This week I completed my first round of maintenance chemotherapy –  five consecutive days of subcutaneous injections of Guadecitabine. I elected to have the shots in my arm as opposed to my stomach or thigh. Very painful, but only lasted several minutes. Good news is that there have been no noticeable side effects. I will continue this maintenance treatment once per month for 11 more months.

During my regular visit to MD Andersen today, I was further advised that I will no longer need to continue with electrolyte/magnesium infusions so that my visits will now be limited to once/week with my Stem Cell Transplant doctor. They further indicated I can probably have my central venous catheter removed over the next couple of weeks. Good news all the way around. I continue to feel stronger each day and am hopeful for a full recovery over the next couple of months.

Your continued support and prayers have been instrumental in my treatment and recovery. I would like to personally thank each of you along with my loving wife and family for being my personal support warriors!

Praying for continued successful recovery,

Yours in Christ,

John L.

How time flies by! Good news on the AML front – last bone marrow biopsy showed no residual leukemia and complete engraftment of my donor’s stem cells. Prayers answered! Will need to undergo O&M chemotherapy, but at a much lower strength compared to what I previously went through.

I still feel somewhat weak, but am slowly gaining back my strength. I am blessed with a wonderful family support network, especially my wife Lorraine – she should be nominated for sainthood after putting up with me during all of my recent trials and tribulations (as well as the previous 45 years).

Trying to get our life back in order, one step at a time. Still working. Started re-attending Church, went to a Sons of the American Revolution Chapter meeting and participated in a bible study with my loving wife. Not used to having to be chauffeured everywhere, and am hoping to be driving again soon.

Still a long way to go, but extremely grateful for progress so far. I can “feel” your support and appreciate all of  your kind thoughts, love and prayers. Please continue.

Love and Peace,

John L.

18 Day – Post-Transplant Update.

I got discharged from the hospital on Thursday, February 21, 2019, in record time following my stem cell transplant on February 6, 2019! Lorraine and I moved into a local Towneplace Suites in the Galleria area to be within 20 minutes of the hospital for two weeks. The engraftment of the new stem cells is going well; and my white blood cell, red blood cell and platelet counts are going up each day.

My new daily routine consists of going back to the hospital each day between 6:00 a.m. and 7:00 a.m. CDT for blood sample collection. I then proceed to ambulatory treatment center for 2 hour intravenous infusion of magnesium and electrolyte fluids to make sure I am adequately hydrated every day. Then, if I need blood products (red blood cells, platelets), which I have not so far, I have to stay an additional 2-3 hours for blood transfusion.

I look forward to moving back to our house on March 7, 2019. It will be good to get back home! In the interim, I am very grateful to have Lorraine as a wonderful caregiver. After 45 years of marriage, I know she didn’t expect to spend her 67th birthday in a small room the size of our 1st apartment.
She has been a real trooper, as have both of our sons and their families. The staff at M.D. Anderson have also been tremendous, both in patient and out patient.

God is good! He has created a new road for me to go down, and I am just thankful to be alive!

Thanks for all of your continued support and prayers. I cannot begin to explain how much strength they have provided me during this challenging time in my life.

Praise God,

John L.

New beginnings. After 4 days of additional chemotherapy and a day of rest, this morning at 10:00 a.m. CDT I received my stem cell transplant in hopes of curing my acute myeloid leukemia. Prior to starting the transplant, I had the hospital Chaplain come up to bless and pray for me. He started off reading Psalm 91, then blessed me, the hospital staff performing the transplant and the donor. Finally, we closed by reciting the Lord’s Prayer and all persons present joined in. The entire procedure took a little over 2 hours, the last part of which Lorraine joined me at the Hospital. I have not yet experienced any adverse effects. All of my vital signs (monitored every 15 minutes) stayed stable during the entire period. Now it is a waiting game to allow the new stem cells to engraft into my bone marrow and begin to produce, new cancer-free blood cells. When we held a light up to the transfer line, you could actually see the clumps of cells coming through the line. Pretty amazing stuff.

There are still all kinds of risks awaiting me with regards to rejection, but I am now on the winning side. I feel strong and ready to take on this new life – many transplant patients reset their birthday as their transplant date. The next few weeks will be like becoming an infant again – my blood type will change from A+ to O+ (my Donor’s blood type) and my DNA will change as the new cells engraft. I just have to continue to hope the new cells don’t go to war to aggressively with my existing cells.

I truly appreciate, and cannot thank everyone enough for your support and prayers in bringing me to this new beginning. Praying for full restoration and know that I am in God’s Hands.

Yours in Christ,

John L.

Final treatment plan has been set. Stem cell transplant still scheduled for 2/6/19, but hospital admission moved back to 1/31 /19. Chemotherapy regimen has also changed. Started taking 100 mg of Venetoclax last Friday orally. Remainder of chemotherapy will be administered in hospital as in-patient. I will receive 4 days of infusion chemotherapy prior to transplant. Infusion drugs will be a combination of Fludarabine and Melphalan. Following the transplant I will receive IV Cyclophosphamide and Mensa for 2 days. The remainder of my treatment plan remains the same as presented in my last update.

Had good visits with my sons and their families last weekend. Very fortunate to have so much support and prayers from family and friends! Please continue to keep Lorraine and I in your prayers. I plan on taking a keyboard into the hospital and have downloaded several books for entertainment. I remain optimistic and am still keeping the faith.

Very thankful for M.D. Anderson and expert doctors, nurses, administrators and aides on staff. They  have truly given me a new lease on life!

With gratitude and faith,

John L.

Off to the New Year with a bang! Bone marrow biopsy this week indicated I am still in remission with a blast count of less than 2%. I have also been cleared by infectious disease, oral oncology, and heart specialists. Unrelated stem cell donor is still engaged, and I am scheduled to enter the hospital on January 30, 2019. Found out my donor is a 27 year old male, and I will be forever grateful for his big heart and willingness to go through this process. The week before I enter the hospital, I will receive two 12-hour rounds of chemotherapy to prepare my system for the graft.

Transplant is scheduled for February 6, 2019, and I expect to be in the hospital for at least three weeks. The good news is that I will not be in isolation and can have regular visitors. I can continue to work, and the floor pod has exercise bikes for my use. I also plan to take a keyboard to the hospital to refresh my piano playing skills. Upon discharge, we have to relocate for at least two weeks to be within 20 minutes of the hospital. This is when the risk of graft vs. host disease is highest and I will have to go to the hospital every day, including weekends.

I am very thankful to have access to M.D. Anderson and to have a loving and caring family for support – especially my wife Lorraine who has been a champion caregiver, driving me everywhere and getting me to all of my appointments.

Keeping the faith, slowly learning to be patient, and praying for a rapid and full recovery!

Yours in Christ,

John L.

Enjoyed a wonderful Christmas holiday with family. Blessed to have a loving wife, two sons and their families and brother, sisters, nieces, nephews and cousins. My niece Kim flew down with her husband and son from Wisconsin to too spend a couple of days with us this week, and we had a wonderful visit. Talked to my old college friends Dave Cole and Hank Cardello over the holidays, both of whom lifted up my spirits.

I am feeling much better now that I am off of the oral chemo drug. Getting ready for the next phase – stem cell transplant. I will spend almost every day down at MDA in January and expect to enter the hospital on January 30 in preparation for stem cell transplant on February 6, 2019. While I will be an outpatient until hospitalized, my daily visits will include multiple tests (EKG, PFT, Bone Marrow Biopsy, Echocardiogram), counseling and rehabilitation sessions, and two 12-hour days of chemo infusion.

I will try to keep this blog updated on a regular basis, but please be patient with me. I remain in good spirits with the support of family and friends and know that I am at the best facility ithe country for treating AML.

God has got this, and I am just going along for the ride.

I hope you all have a blessed and Happy New Year, and I am looking forward to a great 2019! Keep up the prayers and support.

Still Faithful,

John L.

Week from Hell is over, and I was discharged from the hospital yesterday evening. After running all tests known to man and finding no source of infection causing fever and consulting with infectious disease specialists, oncologists and stem cell doctors, they decided it was probably not a good idea to have had me continue taking Venetoclax after my second cycle of chemotherapy was completed. This resulted in extremely low white blood cell and neutrophil counts (neutropenia), causing fever spikes, mouth and body sores.

They stopped my Venetoclax treatments Wednesday night, strengthened my antibiotic regimen and started giving me Neupogen shots to help me increase my white blood cell count and fight off effects of Venetoclax. They wouldn’t release me from hospital, however, until they decided fever spikes were gone and white blood cell count started to increase.

Woke up this morning in my own bed with Lorraine and Bailey close at hand. Then had to self-infuse  new antibiotic for 30 minutes, and head back down to MDA for blood sample collection, results review and Neupogen shot. Same drill on Thursday, but at least I am home for Christmas to enjoy with my loving family!

Then the games begin – I will be down at MDA almost daily as I prepare for stem cell transplant process. I will keep you updated on progress. In the interim, thank you for continued prayers and support, and I wish you a very Merry and Blessed Christmas and Happy New Year!

Still keeping the faith,

John L.

Minor setback on Sunday – developed chills and fever and had to return to MDA Emergency Room. Admitted late Sunday evening and remain in hospital today as they continue more tests to try to determine source of fever. Tests have included multiple blood analyses, throat swabs and cultures and late this evening a bronchoscopy to further evaluate a couple of small spots they observed in my CT scan. Have also received blood cell transfusion and two platelet transfusions over the last two days.

They have ramped up my Valtrex and antibiotic dosages, and my fever does seem to be coming and staying down. Hope to get this figured out soon so I can enjoy Christmas at home and prepare myself for my upcoming stem cell transplant.

Please keep me in your prayers and know that I truly appreciate all the support each of you has provided to date. You continue to be my source of strength and inspiration. I wish each of you a very blessed and Merry Christmas and a Happy New Year.

Struggling some days, but keeping the Faith. I know God has a plan in store for me even when I don’t have  the patience or clarity of mind to always see or understand it.

Yours in Christ,

John L.