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!