Update: Episode 67 (3/9/19)

Title of today’s episode: “If there’s a speed bump or pothole out there we will find it…”
Sending this out because you may have heard something and wanted everyone on the same page. As you recall, we are at Hopkins this week getting chemo (week delayed because of illness). On Thursday morning I got up from lying down to answer my cell phone (TURNED OUT TO BE TELEMARKETER – ARRG!!), and apparently got up too quickly and blacked out for a second.  I fell backward and hit my bum and then my head on the floor.
Terri immediately came to my side, told me what happened and started making calls (we were staying next to the hospital for the week).  We were at the hospital within 10 min with a really sore backside and huge bump on my head.
They did a CT scan (I’m really low on platelets) and found I had an acute “subdural hematoma” –  thats bleeding on the brain for us non-medical types.  They immediately admitted me, put me on heart monitoring, and started doing those neurological tests (“squeeze my fingers, push against my hands…”) every four hours and giving me platelet transfusions, using the platelets to try and stop the bleed.  If not stopped, I would start to lose functions beginning with. Since I had low platelets, its inadvisable to do intubations or chest compressions which could just further cause internal bleeding.
We contacted immediate family and Shannon, Connor and local siblings came to visit – thanks to all. I had two subsequent CTs over the next 24 hours that showed the bleeding stopped and the blood receding, and passed all the other tests – Praise God!  It was a very scary day and a half.  Thanks to our church’s prayer group for jumping in and helping us throw it up to God
They’ve kept me in the hospital since, giving me two or three daily infusions of platelets and the occasional red blood cells.  Best we can figure out the cause was I got up too quickly, and with low blood pressure, that caused the blackout portion, with gravity doing the rest.  The great news is I have no head ache, the bump on my has gone down and there’s been no indication of neurological issues (except I’m still a dumb ass some times).  They even restarted the chemo today so things are returning to “normal”.  We should be going home in a couple of days
My bum is still really sore but I’ll take it all things considered!  We got great care from the team at Hopkins and are most appreciative.  Hopefully this will just be ANOTHER blip on the map as we continue on our day by day journey.  Its been quite a week…I’m looking forward to less drama in the near future!
God’s blessing,
Paul and Terri
Terri’s PS…. let’s just say I don’t want to repeat the past few days,  Very scary, but all things considered, Paul has yet again beat the odds and come out the other side.  His strength and calm continue to amaze me!
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Update: Episode 66 (3/1/19)

Title of today’s episode: “It was the best of times and the roughest of times”.
It’s been a busy time for us since the last update.  My apologies for the Dickensian misquote in the title, but that’s what its been like.
As far as the best part, after closely working with my doctors regarding chemo and transfusion schedules, Terri, Shannon, Connor and I were able to make our long planned trip to Hawaii.  We visited Oahu and the Big Island, and I was able to show the gang my old stomping grounds (I spent 3.5 years in early ’80s in Oahu.)  We visited my favorite beaches (Bellows, Sunset, Waikiki), saw my old homes, and enjoyed the beautiful weather and scenery. On to the Big Island where we toured a coffee plantation, checked out a black sand beach and looked into the Kilauea Volcano caldera.
One of most beautiful moments was when we got back from dinner the night we stayed at Kilauea Military Camp where there was no ambient light.  The stars completely filled the sky and it was such an awe-inspiring, moving experience – showing our insignificance in the universe.
One of my challenges was having to wear a giant, heavy mask for the approximately 20+ hours of flight, primarily to fight disease.  It appears not completely successful (as we enter the tough part).  I had a virus and pneumonia and was wiped out for a couple of weeks (including the medicines).  My partner in crime had issues as well so we were a couple of sad sacks.  Good news we are on the mend and feeling much better.
We did shift my next round of chemo to next week to give me more time to recover.  We are still on the same treatment plan, and will be on the alert to when we need to change it up, which will likely be sooner than we hope.  This almost 63 month journey continues with the help from prayer, medicine, support from all of you, and most of all Terri (xoxo).
Finally, our church is having a “Night of Worship” fundraiser in honor of LLS on April 7 at 6pm at Crossroads United Methodist Church at Ashburn, VA.  It will essentially be a concert playing some of our favorite music. We will have a reception (also at the church) afterward so folks can visit with us if they’d like.  Terri and I will be part of the celebration and hope to see you there.  if you can’t make it and feel moved please donate to LLS, a great p\organization that helps fast track new protocols for blood cancers and who are specifically focused on AML, Paul’s type of leukemia.
God’s blessings,
Paul and Terri
Terri’s PS:  I will have a donation url in the next couple of days, haven’t gotten the campaign set up yet.  🙂 . Paul has been such a trooper through pneumonia andpulmonary virus.  The doctor has been impressed with his recovery and not needing to be checked into hospital.  He continues to beat the odds!  Yay!  

Update: Episode 65 (1/17/19)

Title of today’s episode:  “Status Quo”
Here’s hoping everyone had a wonderful holiday season.  We sure did with one-sies red PJs on most of us Christmas morning and had great visits here at home with friends and families.
I did another round of chemo a couple of weeks ago, and keeping up my vow not to get a port for blood or medicine for as long as I can.  The problem is they need to stick me with an IV pretty much on all my visits now, and the bruising on my arms that results looks like I’m holding the drum for a blindfolded drummer … a small price to pay for the freedom!
We continue our trips to Hopkins to get more “stuff” (chemo, blood, platelets) pumped into me so we can enjoy each day as it comes. As we said before, we’ll keep doing this until conditions dictate we have to go a different path – fortunately I’ve given up trying to control things and am just going with the flow.
Here’s to a bountiful, beautiful and wonderful 2019 for all of us.  Remember what’s important and hold those/that close to your heart.
God’s Blessings,
Paul and Terri

Update: Episode 64 (12/2/18)

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

God’s blessings,

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??? 🙏

Update: Episode 63 (11/22/2018)

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.

God’s Blessing,

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.

 

Update: Episode 62 (9/21/18)

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.

God’s Blessings,

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

Update: Episode 61 (8/22/18)

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.

God’s blessings

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!