Title of today’s episode: Campaign Update – Troops assembled and ready to go.
Title of today’s episode: Campaign Update – Unexpected early results!
First of all, we hope that everyone had a happy, joyous and hopeful Christmas and New Year’s. We had a wonderful holiday with Shannon and Connor, as well as Terri’s parents and her sister’s family. It was fabulous to spend the unexpected time with Shannon and hear of her adventures and experiences in Spain and to enjoy the wonderful woman she has become. Connor finished out another semester at college and continues to grow and mature and amaze us everyday.
Last Tuesday Dudley (me) had another bone marrow biopsy (after the second round of chemo treatment) and Nell (Terri) recorded it. I’ve been to all 12 or so biopsies but never seen one…and now I have. Not only was it no big deal, it was also the least uncomfortable one I’ve ever had. This was to be a check-in biopsy to be sure the chemo protocol was doing some good and kicking Snidley’s cancer cells butt before we proceeded with additional rounds. That weekend we went to the beach for some surf sounds and sanity, and and Saturday afternoon I received an email from my doctor letting us know the pathology report was back and it said I had NO signs of leukemia in my blood…meaning I was in REMISSION already!!! We were only hoping to see a reduced number of blasts (the baddies), and ended up with the whole enchilada!
We were stunned to say the least…in the best possible way! Going into remission wins us a “cou-pin” (Ron White fans will get this) to get us into another bone marrow transplant! They are working to get the transplant schedule (being in remission was a prerequisite) and need to determine when that will be (maybe March) and who will be the donor (details to follow). I’m finishing my third round of treatment this week and will have one more to hopefully keep Snidely out of sight and on the run. We are so thankful for our doctors, the prayers and well wishes from family, friends, coworkers and everyone who’s been behind us through our adventure SO FAR.
- Some ramblings….I had my first haircut of 2016 this week, and noticed my hair color has significantly less gray than before…looks like if you are looking to color your hair, you can always use Azacitidine – my chemo – instead of Grecian Formula 16 (just putting that out as an option).
- At the outpatient department at Hopkins, there’s a very nice woman who greets you and helps direct you to the right place. She’s been working there for as long as we’ve been coming there (like two years) and still asks if I need help. We call her “50 First Dates” since it seems she doesn’t remember us each time we come in (I guess when you see so many people everyday “we” all blend together!
- If anyone wants to start a competitor to the Waze app, we as a team can give it a run for it’s money. We have become pretty formidable at avoiding traffic between our house and Hopkins on our many, many trips.
So, looking forward, we hope to have some more clarity on the next steps and are planning for long term success with the next transplant. There’s still a lot of work to do and we are ready to go. Thanks to all for everything – every email, phone call, well wishes, dinners, rides..whatever – will continue to sustain us as we look forward to the future and what’s to come.
Paul and Terri
Terri’s PS…Paul continues to amaze his team with his attitude and his ability to handle chemo and everything else they throw at him. He has continued to be strong, healthy and energetic. I still pick him for my Trivial Pursuit team any day of the week too!
Title of today’s episode: Battle Update – so far so good!
As of today I’ve completed the first cycle of my current treatment and at my appointment today my doctor said she’s pleased with the progress so far. The foot issue Terri mentioned is pretty much gone and the mouth and hands are doing just fine. I’m still taking OCD-like care of my feet and they are very much improved too! We’ve been blessed with mostly light traffic on frequent trips to Hopkins (of course, just mentioning it here will change that!!) so its really helped make all the 120+ mile round trips more bearable.
I’ve continued with my fortunate ability to handle chemo well and it’s had minimal impact on me so far. I’ve had to have a couple of transfusions of platelets (which are what allows blood to clot) but everything else has been fine. When I was getting my platelets this past Tuesday, the nurse putting in my IV line was looking at all the veins in my arms and said “this is like a buffet” with all the choices she had! My doctor warned me today the second round will likely be harder with more side effects, but our attitude is “BRING IT ON” if it gets us closer to our goal!
Life goes on pretty much the same, except Terri’s doing all the dog walking. Terri and I had a nice Thanksgiving and enjoyed a wonderful dinner with Connor over the weekend. I’m still eating really well and doing it like every 2 hours during the day, so that’s a relief. I’m still working when not getting treatments and have been very thankful for the support from the Juniper Networks team during this entire adventure. For the first time EVER, we have an artificial Christmas tree (because of my possible immune system impact) and its all decorated – except for special ornaments for Connor and Shannon – and I even put the train around the bottom. The rest of the house looks all Christmas-y as well.
So Monday we begin the 2nd chemo cycle and I am so looking forward to “getting to work”on this. We’ve been focused all along for the past two years on what is needed to get better, and been ready to do what we have to to meet that target. Along the way, we try to laugh at ourselves (and others) and enjoy each day. The next big milestone will be another bone marrow biopsy on Jan. 5th to check the effectiveness of this treatment.
Shannon comes home Wednesday night and we are really looking forward to her visit, as well as Connor’s Christmas vacation and spending time with family and friends.
For me, this season is about beginnings, with the hopes of peace, miracles and what can be. We wish all of you a Merry Christmas, Happy New Years and the happiest of holidays during this season,
Paul and Terri
Terri’s PS…Paul’s eating schedule every 2 hours has been great – he’s put some weight back on so he looks really good. I’m a tiny bit jealous that he can just pretty much eat whatever pleases him from glass after glass of egg nog and raisin toast with liberal butter to ice cream for dessert every day after a full meal. Good deal for the Christmas holidays – hopefully he’ll feel good enough for the next few weeks to continue this way!!
Title of today’s episode: Snidely re-emerges and we are back into the fray!
Remember in last our update how I said we were in no rush to start the next phase? Well, things have a way of changing. I had another bone marrow biopsy (my 13th if anyone’s keeping score) a couple of weeks ago and it showed the leukemia was back. So we have already moved to the next steps of chemo treatment, and I completed the last of seven consecutive days of treatment today (Sunday) and will be monitored for the next 3 weeks before completing the cycle again (we’ve been going to Baltimore daily for these and were blessed with reasonable traffic all week). The plan is to get me back into remission so we can proceed with another bone marrow transplant – exact timeframe to be determined, but somewhere in the next 4 – 7 months.
While we knew we were headed for treatment, we’d hoped it would be before leukemia came back on the scene and it is certainly tough timing. We had to cancel our trips to California and Thanksgiving trip to see Shannon in Spain and friends in Morocco. The good news is with all the money we are saving, we are bringing Shannon back for the Christmas holidays. It will be so very special having her here – she’s already warned us she’ll likely break into Spanish or Spanglish so it will be entertaining…as is most everything with Shannon!
We did manage to fit a lot of stuff into October. My neighbor took me to the Washington Capitals (hockey for you non-sports types) opening night and that was a blast. My brother-in-law took me golfing and I managed to complete 14 holes (by far the longest I’ve done in the past year+) and that wasn’t even the highlight. We were on the third tee when a guy with a metal detector wand came up to us and says “the Boss is playing today, so I have to check you out!” Yep, we were “sharing” the course with the President. We watched him tee off of the back nine and he was shaking hands and waving to all of us watching. Just made a great day even more special.
We’ve enjoyed the convertible as well – our annual fall foliage drive was compressed into 90 mins for a number of reasons, yet still we managed to find a wonderful rolling road near home and enjoyed the colors of the trees and beauty of Great Falls on the Potomac. So all-in-all, it was a great October that’s led into a challenging November.
So, we press on. We are focused on doing what is necessary to move to the next step, staying positive and trying to stay healthy during this process (to keep my hands clean, I’ve got boxes of rubber gloves in almost every room and its looking like a proctologist convention around here)! We can have visitors as long as you are not sick (cold, flu, whatever). We’ve had some wonderful visits with friends and family, and while we can’t fully express our gratitude for all the support from everyone, please please know it is helping sustain us through this latest chapter.
We wish a very Happy Thanksgiving to all and remember to enjoy each day and all the wonder, beauty and laughter it will bring!
Paul and Terri
Terri’s PS…It’s wonderful that this time round we are able to stay at home for Paul’s treatment, but does provide some challenges, as Paul mentioned the moves in every room, we also have Clorox wipes everywhere and cans of Lysol sprinkled throughout the house for good measure! Nothing like a crazy person running around with Clorox wipes and Lysol to make a house feel normal! Since we left normal a few train stops ago though, I’m not too worried about it. 🙂 Paul is a champ and didn’t even mention how he’s been suffering from hand and foot virus – something his chemo pills (ones he’s been on for ~18 months) sort of promote. He gets sores mostly on his feet and they are extremely sensitive, this time also a few on hands and maybe some forming in mouth – ARGH! So steroids and lots of washes etc – ah, the secondary hazards of cancer drugs.
Title of today’s episode: Burning the candle from all ends…
Howdy everyone! Promise this time will be briefer than last month. To get the other stuff out of the way, I had my monthly check up on Friday and my doctor was pleased with my counts -they are stable from last month and she even said I looked good (I told you miracles can happen)! As long as my blood counts remain acceptable, we are in no rush to move to the next phase. We’ll likely do another bone marrow biopsy before the end of the year no matter what to see what’s going on “under the hood” and hope things remain stable.
So in the meantime, my doctor said “go do what you want to do”! That means more bicycle riding (ok, two trips of 3 miles each isn’t much but its a start), playing golf, riding around in my newly purchased – but 8 year old – convertible (its really nifty), traveling to NYC and California next month for work (and weekend in Napa/SF too), time at our beach house and well whatever else we can think of (now you get the meaning of the episode title…).
Shannon is ensconced in her apartment in Spain with two Italian roommates (I guess dinner conversation could rival the UN) and getting adjusted to working life…and living on her own in Espana. Terri is enjoying a record semester at the ESL (over 125 students), Connor is doing great at school (as per his text this week) and even Chance is on the mend after cutting his leg surfing down the deck steps Labor Day weekend – we think maybe water skiing may be for him. So life is good for us!
So, we roll up our sleeves and move on. Speaking of rolling up my sleeves – I was well enough to get 6 of my needed immunization shots (all your childhood inoculations are wiped out with the transplant) Friday as the last step of my visit to the hospital. I was expecting one and now I know why babies get most of them – they can’t remember which nurse/doctor to be mad at!!!
Whenever the next transplant takes place, it will be a different donor (standard procedure). My sister told me she’s ready to go back in the trenches for me, but I told her it will be “Next Marrow Up” for our second go at it. We are just so grateful for wonderful family and friends supporting us in so many ways and I know that’s been a key for us to be at this point and looking forward to what ever comes next.
Fall is by far my favorite season, and looking forward dropping the car top and collecting the multi-colored leaves as they fall during our tours of Northern Virginia. Hope all can enjoy the fall in your own way (AZ, TX, FL folk – too bad).
Paul and Terri
Theme of this episode is Dudley and Nell “return” to the Yukon (and a whole lot of other stuff)…
Greetings and Salutations! I know it’s been a long time since our last update on our adventures…and most important place to start is WE ARE STILL ON THE ADVENTURE!!!! The summer has been an amazing ride. June was filled with last minute trip planning and Paul played his first round of golf the day before Father’s Day (the first of 4 nine hole rounds so far this summer). Which led us to our fun adventure…
We had an unforgettable trip to Seattle and Alaska (by the way, we were blessed with a team of 5 people looking after Chance while we were gone). We spent 3 wonderful days with our friends in Seattle, with not a cloud in the sky or humidity in the air, and 75-80º on the thermometer. We did all the tourist stuff – Space Needle, Chihuly Museum, Pikes Place Market (flying fish video attached), plus just hanging out with our dear friends was so relaxing. While we were walking around the city, Paul was always playing Frogger looking for shade! Another highlight was having lunch with a fellow patient we had met at Hopkins who was getting treatment at Fred Hutchison (“Hutch”) Cancer Center and seeing how well he was doing and provide some right coast company in his left coast world.
We met the Grand Princess in Vancouver along with Terri’s sister, brother-in-law and niece, and set sail on July 4th! It was Paul’s first and Terri’s second cruise, and we had a wonderful time. They take your picture every 2 seconds on cruise ships, and dang, they were mostly good and we bought more portraits than we’d gotten in the last 14 years.
The cruise was great – we had a nice cabin with balcony and enjoyed the scenery. We had fun stops Ketchikan, Juneau and Skagway. The highlight was in Juneau, with our helicopter ride to the Norris Glacier and dogsledding when we got there. Terri so loved the helo ride she declared she’d found her next career as a pilot! We had a blast being pulled through the snow and then getting to meet the doggies. In Skagway we took the train along the old Gold Rush trail to the Yukon (hence our episode title) and that was a fun experience – channeling my inner Dudley.
We cruised Glacier Bay and College Fjord and saw some amazing glaciers and were just in awe of it all. After 7 days on ship, we had 5 days in Central Alaska, with stays over looking Mt McKinley (or should it be Denali?), and right next to Denali National Park, and finished in Fairbanks. We went horseback riding, drove ATVs and even took our picture at 1145pm with the sun setting behind us. It was an incredible time, with fabulous weather and we had such a great time. We can go into so much more detail, and if you have several hours we can show you our pictures…
As for the rest of the family:
- Terri is great as ever, and English as Second Language (ESL – she runs the program at our church) registration started Thursday and looks like this could be record for attendance and we still need childcare volunteers, anyone?? She also got a new PC and we thought she’d have a lot of free time since she no longer complains about the “P.O.S” computer she used to have, but turns out she’s filled her time trying to figure out Windows 10 instead!
- Shannon is preparing to leave for Spain for 9 months. She’ll be a teacher’s assistant in a high school (program sponsored by Spanish Government) helping the students learn all their high school subjects, but learn them in English vs. Spanish. She has a flat (room) mate (from Canada) lined up and will depart on 9/22.
- Connor is back living at University for his sophomore year mostly taking GRUs while he figures out his major. This year has a job at local restaurant really close to campus (riding his bike to work)
As for me…weeeell, a few months ago we thought we were getting closer to being “out of the woods”. Turns out the woods got bigger (or we found ourselves heading back into the woods)! I had another bone marrow biopsy last week and the good news is there are no signs of leukemia in the marrow. Most of my counts are OK, although my platelets have been dropping since May. We’ve been looking at all of this closely and adjusting medications since then.
The challenging news is that my marrow is now 73% my blood – if you recall for a long time it was all my donor’s. This trend started in my May biopsy which showed 17% my blood (I had incorrectly reported the marrow back then was all donor L). We’ve been watching this closely since then – we were hoping the Sorafenib might help this trend, but apparently it did not. What this means is that my blood seems to be more stubborn than my donor’s and I’m losing the transplant.
The net of it all that is right now I’m doing fine, feeling good…but based on the new information it looks as though I will need another transplant at some point in time in the not too distant future. We are not sure when, and we’ll continue to monitor my condition. The doctor offered some alternative treatments in the interim and we’re evaluating whether/when to start. Not sure what we really gain given I’m not symptomatic yet, and they would be a big lifestyle change (all my counts go down, may need transfusions, other crappy stuff) so figuring out what’s next. It is what it is, and I’m looking to continue to do everything I want to and can until I cannot – golf, weightlifting, gardening, drywall repair, travel, whatever.
So, the mantra is – SURPRISE – take it a day at a time, so very thankful to laugh, love, eat, enjoy the exciting and humdrum parts of life. We don’t know what’s next, but then none of us really does anyway. We shall see…
Paul and Terri
Terri’s PS: Certainly this is not how we hoped to close out such an awesome summer! But as the days go by we are coming a bit more to terms with the future and the uncertainty. If Nell and Dudley need to go back for another episode then we’ll go give Snidely another whipping.
Title of this episode – Clear as mud, eh?
Its been a couple of months since our last update on the adventures of Dudley and Nell, and we’ve certainly been a busy Mountie and Maiden. We marked my new first birthday on April 22, commemorating a year since my bone marrow transplant. Its been a long haul and we are so grateful for everything and all the support from EVERYONE!
May 15-16 was a very special weekend since we celebrated Shannon’s graduation from William and Mary in Williamsburg. We had a wonderful time all three day, from having dinner on the beach in Hampton with my college buddy, and the FULL day of festivities Saturday, included the walk across campus, formal college ceremony and the International Relations (one of Shannon’s two majors) ceremony. The whole weekend was exhausting for me but so very, very special and I am so very glad I was able to be there and share the moments with Shannon and our family.
Everyday life continues to roll along – Connor got his driver’s license in May and Terri finally got her braces taken off and she looks fabulous – I should say even MORE fabulous. I’ve managed a couple of business trips to Dallas and Long Island in the past few weeks, and realized that travel is still the same “fun” it was 18 months ago! We – what I am I saying – Terri has finished all the planning for our cruise in July so all we have left is what to pack and figure out coverage for Chance – the person who was going to house/dog sit had to back out at the last minute (shameless request to captive audience – if anyone has a recommendation for house/dog sitter for the first 2 weeks in July please let us know asap)!
So enough about what we are doing, lets talk about how we are doing. The really good news was the results of my bone marrow biopsy showed no evidence of leukemia, and that I was 100% donor. As you can guess from the episode title, the “clear as mud” comes into play with the rest of the results. T-Cells, that had been moving towards more of the donor, have gone back to over 90% me. As my doctor says “This is something to keep an eye on”, and we say “what the heck does that mean”?. As a result, they doubled my dosage of Sorafenib, which was an experimental drug I’ve been taking since last July intended to prevent relapse. And now we play the waiting game to see how this increased amount of Sorafenib helps out. We deal with this by focusing on the beauty and wonder of each day, and so very thankful for every opportunity we can experience.
Paul and Terri