Title of today’s episode: “Quick Update (although took a while to achieve!)”
Today marks the 5th anniversary of my leukemia diagnosis, so that means I’m a FIVE YEAR survivor! While the preceding years have had their ups, downs, remissions and relapses and all that those entail, it’s been an amazing journey for my family, friends and me.
Not only have I learned so much about myself dealing with this “situation”, I have been humbled by the love, prayers, thoughts and visits by so many people. Thank you all very much for being such motivators through this process, As always, my love Terri is at the top of my support food chain and I thank God everyday for her being there.
So the fight continues, and we are looking to enjoy the holidays and whatever 2019 (and beyond😊?) brings. We hope all the best for you and your families in this wonderful season
Paul and Terri
PS – all I can say is Paul is one of the strongest people I know and while this 5 years has not been of our choosing, he has made it through with humor and only a few (very reasonable) bouts of complaints. May we enjoy 5 more??? 🙏
Title of today’s episode: “Giving Thanks”
I am so thankful for having been able to participate in the LLS Light the Night walk on 10/12 with our team “Dudley’s Do-Righters”. We had over 20 folks walk with us! Terri had ski caps made with our team name, and was able to raise over $3000 from donations, including from many on this email – thank you very much and love you Babe for taking the lead!
I celebrated my birthday on 11/9 with my families at home and at Hopkins! I had appointments there starting at 7am and after some lab issues we were able to ‘sneak’ away 8 hours late. The nurses decorated my day bed at the clinic so that was fun. The kids decorated our family room in Hawaiian motif complete with leis and music for the cake and gift parts of the evening and that was a great surprise.
We were able to spend a few days at the beach last month which is always relaxing. We’ve also caught up with folks from in and out of town, including cousins and had a mini-reunion with some college classmates and spouses – we really enjoyed your company. I told Terri with so many people wanting to visit I felt a bit like a tourist attraction and so appreciate seeing everyone!
As far as my treatment, feedback from my doctors at Hopkins and Seattle indicated there’s no real “golden ticket” out there given my situation. We’ve been continuing with the same chemo regime as before – I seem to be holding steady on this protocol, so will be on this for as long as we can. Always looking ahead, there’s another drug we might try, and we will re-evaluate in January on whether that’s the path to take.
So, life continues with regular trips to Hopkins for chemo and product, and our family got bigger with the adoption of Leesa, a 6-year-old female greyhound. She is an absolute delight and a very welcome addition (plus Terri’s doing all the walking, etc 😊)
As per this week’s holiday, I am so grateful for each day and for all you wonderful people who are so much a part of that. Thank you for being there for me. I am truly blessed to be able to get up, read the paper, walk (occasionally) and go through my day, and am planning on doing this many, many more times.
The calendar says it’s Nov 22 this year, but every day is Thanksgiving to us.
Paul and Terri
Terri’s PS – Paul is soldiering on each month with this protocol, hopefully for many months to come! Be blessed as we are blessed in the midst of the storm.
Title of today’s episode: “Not the best of news”
I guess there’s no way to sugar coat this – my leukemia has returned…again! My last few blood tests have indicated blasts (leukemia cells) in my blood. We did another test of percentage of blood – mine vs. Connor – and showed that since end of July, it had gone from 9% me / 91% Connor to about 50% / 50% between the two of us.
Right now, the plan is to do another round of same chemo we did in August and September the first week of October. In the interim, our oncologist is reaching out to other facilities for other treatments, and we’ve contacted the doctor we talked with in Seattle to do the same. I will be going to Hopkins once or twice a week for red blood and platelets whichever is needed.
The good news (besides avoiding ambulance rides and hospital stays) is I am feeling pretty good, still able to walk up to 1 mile per day, and now able to enjoy a glass of wine every so often. The fevers have not returned, so very thankful for that.
So, we do what we need to do, and are hopeful the doctor’s research provide some possible course of action or a miracle. We are truly taking it a day at a time, thankful for each one and making the best of it. Terri’s still my lifesaver and we celebrated her birthday yesterday. Happy Birthday my darling!
Thanks again for all your thoughts and prayers and as always, treasure your loved ones and live each day to the fullest.
Paul and Terri
Terri’s PS: I think both of us are working to get our feet under us for what the next few weeks/months hold and appreciate everyone’s kindnesses. Thank you. We are participating again in this year’s Light the Night walk in Reston on October 14th and will be surrounded by a bunch of people who are in the same spot we are and many who have beat this bastard! If anyone wants to come out and walk with us, it would be awesome, or donate to the team “Dudley’s Do Righters.” Donations go to Leukemia and Lymphoma Society (LLS) who are one of the mainstays to providing money for research for new therapies and currently have a Beat AML campaign going (which if they are lightning fast might help Paul, but…) . Just go here to learn more. https://pages.LightTheNight.org/nca/Reston18/dudleysdorighters
Title of today’s episode: “Be careful what you wish for”
The last update had me proceeding with “maintenance” chemo to help get rid of my bad cells for Connor’s good cells. We started that on Aug 6th and by the end of the week we had definitely achieved GVHD much more than desired. I was running fevers and mouth sores and didn’t do the 5th day of chemo. We had some challenges Saturday that ended up with my spending a few days inpatient at Hopkins (a MUCH longer story for another time). The doctor put the fire hose to the GVHD using steroids which resolved the fever, rash and mouth issues.
The steroids knock out the immune system which then required 4 or 5 other medications, so I’m popping pills all the time. They’ve already started tapering the steroids and making plans for the next round of chemo starting Labor Day. I’m feeling pretty good but tire easily and need to move slowly when I stand up…all things considered I’ll take it for now. We’ll check how much my blood is Connor’s versus mine next Friday. Hopefully my recent “conflagration” has pushed the needle further into Connor’s court.
So the chemistry experiment continues, trying to reach a balance between helpful and harmful GVHD. We are working on keeping positive and dealing with all the twist and turns we encounter as best we can. I thank God (as always) that I’m on this journey with Terri and her strength and support keeps me going…still love ya Babe.
Here’s hoping you all enjoy the nice weather (although we have had TONS of rain this month) and as always cherish and enjoy each day and those you love and care about.
Paul and Terri
Terri’s PS- When Paul says his encounter with the hospital is a long story…yup, but, suffice it to say, he basically doesn’t remember Saturday a week ago as he was completely out of it. It was a bit scary, but checked off a bucket list item…an ambulance trip with lights and sirens for Paul. The doctors at Hopkins wanted him checked in asap. Fortunately, my “husband” returned fairly quickly which made me very happy. He’s such a trooper that he went with me the next weekend to my parent’s house to help start clearing it out and ready it for sale. It was a stressful time for me and I was very happy to have him with me. He is still my rock!