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.

 

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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!

 

 

Update: Episode 60 (8/3/18)

Title of today’s episode: “Dudley and Nell continue the experiment”

An observation…in golf if you can shoot your age, it means you are: (1) old and (2) still a really good golfer.  I am drawing the parallel for leukemia updates since today’s episode is the 60th (my age) meaning I am: (1) old enough and (2) still able to write these – both of which are really good things.

We started the campfire-inducing DLI two months ago with Connor’s cells and last week they sampled the stew (did a biopsy) and found:

– there was no evidence of leukemia in my blood or marrow

– my blood was 91% Connor and 9% me

The first item is very good news, because it means I am still in remission YEAH!  The second item shows that while I didn’t experience the radical GVHD I expected (like a forest fire, or “human sacrifice, dogs and cats living together”), there was – and still is – some reaction and turns out Connor’s cells took care of all of mine…almost.  In light of this and other factors, my doctor has me proceeding on a maintenance chemo plan starting next week – with the same drug I had earlier this year – which will be 5 days a week every month.  As for how long this will be, its TBD for now.

While we were watching the fire stay mostly under control the past couple of months, life goes on.  Terri and I celebrated our 17th anniversary the end of June, and we are so very blessed to be able to enjoy and support each other. Shannon made a BUSINESS trip to Fiji and had a wonderful time.  We had a great weekend at the beach with Shannon and Connor and friends.  Connor’s continuing his job search and Terri is recovering from a broken toe -she always says the story about these kind of injuries should always include a trapeze (alas her’s was running into a shopping cart)!

As far as our adventure, it continues on a path into sort of a haze.  The goal of the treatment is to keep me in remission, as well as hopefully letting me stay feeling good.  The challenge is we don’t know how long this treatment will last – it all depends on how I react.  We are hopeful because I’ve demonstrated the ability to handle chemo well and my doctor has had very good, long, durable remissions using this with other patients – with the caveat, as always, each person is different and “your mileage may vary”.

We’ve talked many times about this being a marathon, and this next phase clearly meets this analogy.  I’ve done 7 marathons in my life so hopefully I can draw from the training and races to keep me plugging along.

Thanks again for all your notes, well wishes and prayers and remember to enjoy each day and all the people in your lives.

God’s Blessing,

Paul and Terri

Terri’s PS – It has been an eventful summer, much of it unplanned.  Between taking trees down at both houses, needing a new roof at one of them, new lawn at the other, ovens that have cooked their last and sump pump flooded basement, it’s been anything but boring.  All while continuing to mourn my daddy’s passing and working with my sisters on his estate (thanks Pam!) Life is a journey with a GPS that continues to say “re-routing, re-routing, so learn to go with the flow and don’t be upset at being a little lost!

Update: Episode 59 (5/28/18)

Title of today’s episode: “Pomp and Uncertain Circumstances”.

The “Pomp” applies to our son Connor who graduated from George Mason University last weekend.   Connor worked very hard to complete his studies and join the ranks of those with a Bachelors degree.  Our entire family so very proud of him and all his work that went into this accomplishment.  Well done C-man, well done!!

The “Uncertain Circumstances” refers to what happens next with me.  After completing four rounds of chemo and another bone marrow biopsy, I got the green light and received a Donor Lymphocyte Infusion (DLI) on May 25th from my “Designated Donor” (that would be Connor).  Again, well done C-man, well done!

As we’ve mentioned previously, we need to induce graft vs host disease (GVHD) where Connors’s cells kick the crap out of my cells to annihilate the leukemia cells!  This typically takes several weeks to start, and we don’t know what or how long the side affects will be: likely affect liver or gut or rashes (OH MY)!   We describe it as the campfire you build in the woods, and when you light it you want it to burn, hope it doesn’t burn out of control!

So, we sit and wait. After four and half years of this, I’ve learned to have patience (not really), trust the process and be vigilant of any changes to report to my doctor between my frequent visits.  This is one of the few times you actually HOPE for something lousy to happen!

We continue to get amazing support from everyone and it really helps us meeting these challenges – THANK YOU SO VERY MUCH!  We would love to hear from anyone who just can’t get enough of me from these notes 😊.  Enjoy the summer season, remember why today’s a holiday (Memorial Day).   We’ll be making s’mores by that campfire!

God’s blessing,

Paul and Terri

 

Terri’s PS…Paul came through the DLI feeling good, somewhat tired, but that’s the norm these days.  We decided to head to the beach for a couple of days, but were greeted by a tree limb having pierced our roof.  Fortunately Marta and Mark (Terri’s sister and brother-in law) were able to come down and between the 4 of us Mark got a temporary patch up.  Paul and I head back on Friday to meet the insurance adjuster and possibly a contractor.  Hope this won’t be a long drawn out fix, but we have to rely on “beach” people…..

Update: Episode 58 (4/27/18)

Title of today’s episode: Just an Update

The major news is Terri’s dad passed away last Thursday.  As I said in my last update, Terri was trying to get to Myrtle Beach but her flight Thursday didn’t get off the ground before he died – she did get to speak with him on the phone.  He went peacefully back to the Lord, falling asleep and just stopped breathing.

Dee was finally reunited with his lifelong love Pat who left us late January 2017.  They were high school sweethearts and were married for more than 60 years.  I cherished the opportunity to have them in my life over the past 18 years.  Prayers for them and Terri and her sisters.

As for me, I’ve completed the 4th round of chemo earlier this week and feeling fine – the rash is back but we are staying ahead of it with anti-itch drugs and steroid cream.  We are looking forward to the DLI scheduled for later in May.

It will be a very big month for Connor: he graduates from George Mason University on 5/18 and then repeats his role as “Dad’s life saver” the next week by donating stem cells.  I can’t express my thanks for his gifts of life…you are the best C-man!

We continue to make headway towards the upcoming events in May. As indicated before, we are available for some visits so please let us know.  Otherwise, thanks for notes, prayers and thoughts – please keep them all rolling in!

God’s blessings

Paul and Terri

Terri’s PS…I haven’t completely assimilated that my parents are gone, forever.  They have always been a huge influence in my life and my (and my sisters) biggest cheerleaders.  If we are lucky, we each have to face this void, but hopefully after many years of relationship, communion and love.  In that way, I am lucky, though still bereft.  Thx for all your love, prayers and support, I am lucky in that way too.

 

 

Update: Episode 57 (4/18/18)

Title of today’s episode: “Path forward determined – ALL AHEAD FULL”

It’s been over 4 weeks since our last update, so writing time! I’ve completed 2 of 7 doses of my 4th round of chemo.  I continue to handle the doses well (there’s a HUGE blessing)! After the chemo is completed next week we’ll do another bone marrow biopsy.

We have decided to proceed with the Donor Lymphocyte Infusion (DLI). That’s the one where we take more stem cells from Connor and try to incite graft-Versus-Host disease to kill the bad cells.  Our doctors in Baltimore and Seattle agree this is a reasonable path. This is made possible because Paul still has 47% Connor in his marrow, so boosting back to 100% is the goal.  Since Connor is the donor again, he is scheduled for work up on 5/21 and make the extraction of cells on 5/25.

Thanks to everyone who sent well wishes after last update and sorry I didn’t reply to each individually – will not do that again. The afore mentioned rash cleared up and we are staying on the alert for new outbreaks.  Otherwise, I’m feeling OK and very blessed for that.

Terri and her sisters are dealing with the failing health of their dad.  Terri and Marta were there last week, and Terri is returning to Myrtle Beach tomorrow to be with her dad with her other sister Pam.  Praying for their dad’s comfort in his final days and for the girls too.

We are so thankful for everyone’s thoughts and prayers – we continue to plow ahead.  We are available for some visits so please let us know.  Finally, there’s a great song by the group Outspoken called “The Good Fight” that’s become our rallying cry.

God’s blessings

Paul and Terri

Terri’s PS…Paul is such a trooper, he has been managing on his own a bit and fortunately his sisters and brother-in-law are fabulous and riding to out aid to stay with Paul here in Baltimore for his last 5 infusions.  I hope to be able to spend some time with dad but am truly ok that his time is short.  He has been so sad since we lost mom last year that he will be happier in heaven.  I only hope his “trip” is as pain-free and calm as possible!