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!

 

Update: Episode 56 (3/25/18)

Title of today’s episode: “Moving the needle, making progress”

It’s been over 4 weeks since our last update, so writing time! I’m finishing up my third round of chemo tomorrow.  They did another bone marrow biopsy last week (3/13) and it showed that I am down from almost 30% to 5% blasts (leukemia cells in my marrow). Although we were hoping for remission and a little disappointed at 5%, the oncologist was very pleased with the progress. She had also done a chimerism test to see how much of my marrow was donor (Connor) and how much of me had taken over.  Blessedly, I still have about 47% of Connor’s blood (way to hang in C-man)!  While not yet in remission, this information opened up another possible treatment (in addition to a third transplant) – take more stem cells from Connor and try to induce graft vs host disease to kill the leukemia.

Thanks again to everyone who provided info on Tricare – they all were very good and helped us get to the bottom of coverage.  Looks like we’ll be able to work with the Seattle team if we decide on the transplant.  While we still haven’t gotten out there yet, there looks to be a number of possible donors, which is very good news.

We’ve been spending time watching March Madness and realizing our brackets are trash (though right now Terri is tied for 16th out of about 120), we’ve been rooting for the underdogs – go Loyola! We’ve gotten together for dinners with Shannon and then Connor.  Connor has just a couple of months before he graduates from George Mason University in May which is really exciting news.  Shannon’s doing great at work and has already travelled to Mozambique and El Salvador on business this year.  Terri’s still my rock and I can’t thank her enough for the love and support.

I’m feeling ok and have gotten so see some family and friends over the past few weeks. My biggest issue is one of the chemo drugs caused rashes in my legs, arms, chest and back (what’s left???).  It’s been itchy but manageable with lotion and drugs – just something more to deal with 😊.

We have meetings/calls this coming week with our doctors in Baltimore and Seattle to collect additional information on the two possible treatments, including timetables, prerequisites and other factors.  Then we’ll have to weigh the pros and cons of each and make our choice.  Both methods will depend on inducing graft versus host disease, which is key to fighting the disease.

We are so thankful for everyone’s thoughts and prayers – as we said this group has been with us all through this journal and we look forward to the strength and inspiration we get from you.

God’s blessings

Paul and Terri

Terri’s PS…Paul minimizes the “rash”- it is literally all over his body and has been for about 3 weeks.  He uses ice packs to quell some of the itch and very hot showers, but his back scratcher is getting a lot of use!  While this is really annoying, the doctor thinks it is a good sign for killing the leukemia.  Onward and forward into the future!

 

Update: Episode 55 (2/12/18)

Title of today’s episode: “The fight goes on…”

It’s been over a month since our last update, when we discovered my relapse, so we wanted to let everyone know the latest.  Right now, the first order of business is to get me back into remission – everything else is predicated on that.  I started the chemo protocol I mentioned in my last note (the one that was successful earlier) along with another drug as part of a trial.  I get chemo 8 days in a row (travel sucks!) and then off for three weeks (still weekly check-ups to see if I need any transfusions).  Then, repeat the cycle –  round 2 begins on 2/20.  I’m doing ok for now, with the biggest issue being exhaustion.  I spent a lot of time sitting with my legs up (could definitely be a lot worse – I’m at home not in a hospital).

We haven’t gotten to Seattle yet, but have had a couple of Skype sessions with a doctor who treated a friend of ours. We really liked him and are hoping to work with him.  The issue is my health insurance would only cover a fraction of the cost at his facility.  I do have secondary coverage under Tricare (retired military insurance – I’m retired Navy reservist), but not sure what they will cover.

If anyone has any expertise or contacts who really know Tricare, or how to get info from them we’d REALLY appreciate you letting us know!

We also managed some fun since last we “talked”.  Because of changing conditions (that would be me), what was originally our Hawaii trip, became our Key West trip, finally ended up being a long weekend trip to Ocean City MD (beaches are my happy place) for the four of us.  We had a wonderful time making fires, eating s’mores, playing mini-gold (the girls smoked the guys), playing board games and going to the beach (at least seeing and touching the sand).  It was a fabulous time.  Terri also took me to Top Golf later, where I was hitting balls with my mask, gloves, Clorox wipes and hand sanitizers…you do what you gotta do!

As usual, “one day at time” continues to be the mode of operation.  With my blood counts changing, I’m monitoring my temperature daily, and making sure I’m drinking enough water AND trying not to lose weight (not as easy as it sounds).  As I said earlier, next round of chemo starts in a week, and will have another biopsy early/mid-March, after that to see where we stand on step one – getting back into remission.

We are so thankful for everyone’s thoughts and prayers – as we said this group has been with us all through this journal and we look forward to the strength and inspiration we get from you.

God’s blessings

Paul and Terri

Terri’s PS – Paul asked about Tricare specialists – we would really, really love if anyone could help with this.  We have talked to Tricare a few times and they seem to only read coverages from website pages.  They are not yet giving us any level of security/knowledge of whether a transplant is covered and we don’t really want to start down the path to discover the “phone representatives” had it wrong.  We have been blessed with insurance in the past and have potential alternatives but would have to start over on relationship building and information exchange, so we need to start that action quickly.  If Paul gets a 3rdtransplant it will be from an unrelated donor which takes time to put in place……

Update: Episode 54 (1/6/18)

Title of today’s episode:  “After Snidely’s vicious ambush, Dudley and Nell look for cover and a way through the fire storm.”

In my most recent update we mentioned I had a check-up at Hopkins on 12/22 and expected to continue to receive positive news.  Well, that was not in the cards.  My blood test indicated I had leukemia cells (“blasts”) floating in the blood, and a subsequent bone marrow biopsy confirmed the leukemia.   We had another appointment 1/5 and got some more information.  My blood is just 40% me at this point so yes, I have relapsed.

On a positive note, my doctor was pleased my counts looked stable Friday- in fact my white counts went up (good thing).  We discussed treatment options, and its looking like we are leaning towards a protocol using a drug we had success with two years ago, in conjunction with another drug (TBD).  This does not guarantee success since Snidely keeps adapting but we’re hopeful it will work again.

Based on my biopsy and recent blood test, my doctor was comfortable with us taking some time to decide a treatment (2-3 weeks).  We are looking at getting a second opinion at Fred Hutchinson Cancer center in Seattle, as well as taking a family vacation – all of us were to be in Hawaii from 1/11-19 but now are looking at warmer location in the US.

In the context of all this, we still had a great holiday.   The family got our picture with Santa on Christmas Eve – did a second one adding Shannon’s boyfriend as well.  Our church has a fabulous Christmas Eve service with amazing music, and had fun opening presents the next morning as well.  We topped the holidays at our niece’s wedding on 12/30, where we had a blast, dancing, visiting with family and just really, really enjoying ourselves.

So, this is our new normal.  We’ve got some more research to do, cancelling travel plans and making others, and then deciding on the next action and getting started.  I’ve always said the prayers and thoughts of this group have been so valuable to us, and we need them now more than ever.  Your continued support as we navigate what will happen next means more to us than you know.  As always, cherish every day, let the people you love know that, and as one of our favorite movies says “Never give up, never surrender”!

God’s blessing,

Paul and Terri

Terri’s PS – This is clearly not the news we wanted to hear, but we are here and will take it day-by-day and enjoy every one.  Paul is amazing!

 

Update: Episode 53 (12/10/17)

Title of today’s episode:  Milestones, Milestones

 

Past couple of months have marked two major milestones for me.  Number one was I celebrated my 60th birthday in November.  As many of you know, Terri pulled off yet another surprise party for me on Nov 4.  She effectively recruited Shannon and her boyfriend to keep me busy for the afternoon, and I blissfully and clue-lessly walked into the surprise!  Family and friends from as far as Florida, NY and Virginia Beach were there, along with cards and notes from many others who couldn’t make it. Great food, great friends, great conversation made for a very special evening.  Thanks to all who participated and helped Terri pull off an amazing event.

 

The second milestone was December 2, which marked my 4th anniversary as a cancer survivor (you start on the date of your initial diagnosis).  It’s been a long journey, and it’s been amazing – the support from friends and family, the care provided by the team at Johns Hopkins, the coverage from my medical insurance – but most of all, the unwavering support, strength, wisdom, and love of Terri.  I’ve said too many times I wouldn’t still be here without her, that’s my story and I’m sticking to it. 

 

So, just like we’ve said so many times before, we take it a day at a time.  I have another check-up at Hopkins in a couple of weeks so planning on hearing more of the same news – still doing fine.  It’s amazing to celebrate another Christmas – we have our regular FAT tree so it’s business as usual!  We are still so blessed to have this opportunity and are grateful for EVERTHING!!!  

 

We hope all the best for all of you during this season and wishing health and happiness to all.   Merry Christmas and Happy Holidays.

 

God’s blessing,

 

Paul and Terri

Update: Episode 52 (10/17/17)

Title of today’s episode:  Status Update: BLESSED!!

I saw this journal Terri gave me and on its cover was this great line that’s become today’s episode title.  It is absolutely perfect.  As I look at it, I am so very blessed to have such a wonderful family, an amazing, supportive and loving wife, great friends, a steady job, great medical benefits :).   I’m feeling well, able to walk the dog, even able play golf inconsistently (just like I did before all this started). Is that not blessed or what???

The summer sure went really fast. – no real vacation (besides a great weekend at The Greenbrier shooting stuff and throwing tomahawks!) but did get to the beach for July 4th and enjoyed Shannon and her friend taking surfing lessons (our daughter will try just about anything) and a trip to South Carolina to spend time with Terri’s dad. A huge highlight was being able to return the favor of hosting our exchange daughter Lena and her mom Kristiane, from Germany for a few days in late July.  It was Kristiane’s first trip to the US and we spent a day being the tourists in DC, doing the double decker bus trip around the city and having a great time.  We hosted a cookout for folks who knew Lena from the year she was here to introduce them to her mom.

Since fall is my favorite time of the year, I am so looking forward to the next few months. We went to Ocean City in early October for Terri’s ‘blah blah-th” high school reunion and got in some real beach time!  We’re enjoying Sunday afternoon drives with the top down on the convertible – a great way to enjoy the weather.

Last Friday we participated in the Leukemia and Lymphoma Society (LLS) Light the Night walk.  Terri was able to meet her goal of raising $1000, and we’d like to thank those of you who contributed. It was a special evening – being with other survivors, enjoying our success, and mourning those we’ve lost.  Blood cancer has hit my family hard – losing my parents, two cousins, and an uncle, and another cousin who’s on the journey. We remembered friends from Hopkins who are no longer with us – and at the same time being so very thankful for every day and the promise of tomorrow.  It really makes you enjoy each day as it comes and be grateful for everything – so my life is summed up – STATUS BLESSED!!

My advice is get out and enjoy the weather, cherish your family and friends, and make the most of everyday. We just don’t know what adventures are in store – lets’ just go find out.

God’s Blessings,

Paul and Terri

Terri’s PS:  Paul mentioned our Sunday drives, he neglected to say we’ve made a habit of taking a drive that will go through beautiful scenery…and stop for ice cream somewhere.  It’s the little things!