Purple Stride June 10, 2017

 

We have been participating in the Purple Stride run/walk in Washington DC for the past two years.  This year will be an important one.  We will be doing it to honor my dad.  He will be proud of us.

Please click the link below for more information.  Come walk, run, donate, or smile for us.  We need you and appreciate you.

Cheers!

Click here to register/donate!

team-photo

Arrangements for Daniel Edward Arndt

Wednesday
December 7, 2016

8:00
(Family Only)
Kalas Funeral Home
2973 Solomons Island Road
Edgewater, MD 21037

 9:00
Funeral Mass
Saint John Neumann’s Catholic Church
620 Bestgate Road
Annapolis MD 21401

10:00
Funeral Service
Crownsville Veterans Cemetery
1122 Sunrise Beach Rd
Crownsville, Maryland 21032

11:00
Celebration of Life
Mariner’s Point Clubhouse
223 Georgetown Road
Annapolis, MD 21403
Follow Georgetown Road through to the end.

 

Hotels

Holiday Inn Express and Suites
2451 Riva Road
Annapolis, MD 21401

Hampton Inn and Suites
124 Womack Drive
Annapolis, MD 21401

In Lieu of Flowers
Donations can be made to the Pancreatic Cancer Action Network in Dan’s honor.
click here to donate

Daniel Edward Arndt

dad

Daniel Edward Arndt was a fighter.  He bravely fought pancreatic cancer for almost two years with positivity, grace, and dignity.  He fought to stay with us as he ensured my mom, his wife, was taken care of and settled.  He fought for the time that he needed to make lasting memories with his grandson, Jack.

And on his last day, he fought bravely as he waited for his dear brother, Gregg, to arrive and be by his side.  Surrounded by loved ones, my father passed away peacefully at home on Saturday, December 3rd at 1:55 in the afternoon.

Arrangements are being made and will be posted as they become available.  Please check back for more information soon.

“Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain.”

February 1, 1949 – December 3, 2016

 

Cheers

Melissa here, writing for dad.

This thanksgiving, we had a lot to be thankful for.unnamed-1  We are thankful for good food, family, friends, and warm homes.  We are thankful for the time we’ve had together and the memories we’ve made.  We are thankful for Jack and his ever-amusing antics.  But, above all, we are thankful that dad was able to come home from the hospital just in time to be with us for Thanksgiving.  He was in his recliner, snacking a little on cheese and crackers, drinking coffee, and watching football.  He had a good day and we did our best to tire him out.  So much so that everyone took their desserts to-go and let him rest.

I’m not sure I can write this in a way that will make it feel like the past few weeks have been easy.  There have been so, so many people that have helped us, loved us, and taken care of us.  I don’t know how I could thank you all for everything you’ve done.  All of the visits, dinners, prayers, kind words, and loving gestures have been fueling us to continue as we care for my dad.

We do need to say a special thank you to Aunt Ginny (affectionately referred to as Jimmy, according to Jack), Aunt Mary Jane, and Aunt Anne.  The time they have given to help us through this is nothing short of perfect.  We love you.

Just as dad fought hard in his battle against cancer, he is now fighting hard to find his way to peace.  He is resting, comfortable, and at home surrounded by an abundance of love.

Raise your glasses tonight and say a cheers to my dad.

unnamed

Ringing the Gong

Melissa here, writing for dad.

img_7061

There is a tradition at my dad’s cancer treatment center.  They have a gong in the middle of the room that you get the privilege of ringing to signify the end of your treatment and your successes.  This is normally reserved for patients who learn their cancer is in remission.  Dad’s cancer will never be in remission but he’s ringing the gong.  He’s ringing it long, loud, and proud.

He has decided (with the help of all of us and Dr. Alghren) to stop his chemo treatments.  The last reading they did of his tumor markers was above 750 and, even at the worst, the highest it’s ever been is in the 300s.  The current numbers are an undeniable sign that the chemo is no longer working. Dad talks about his “reserve strength” a lot.  It’s what has helped him bounce back just enough after every chemo session to keep trucking to the next one.  He says that reserve is gone and we can all see that he’s exhausted.

We thought living with pancreatic cancer was the new reality.  Well, this is the new-new reality.

Dad had his catheter put in about two weeks ago.  The catheter goes in through the side of his stomach and allows him to drain the ascites (fluid) at home.  They sent him home with a dvd – seriously a dvd – to watch on how to drain at home.  This catheter has been a bumpy road, to say the least.  They’ve had in-home nurses, medical supplies delivered to the house, two trips to the ER in Annapolis, and one major trip to the ER at George Washington Hospital.

Guys.  It’s not all bad.  Dad got a fancy pants LaZ BoyImage result for 2016 honda cr v dark brown recliner and mom got a new car!
Both of these things were needs, for sure.  Dad’s recliner is big, squishy, and probably going to play a very important role in his time at home.  It will be the place where we can all gather around him when we visit.  Oh, and its heated with massage.  Just saying.  Mom would like you to know her new car has heated seats too.  She got a 2016 Honda CRV with all the bells and whistles.

The past two weekends, dad’s had a couple of nice visits with friends of mine.  Mike and Dyan the first weekend, Kyle and Kevin the next.  Dad had a great time with them as he chatted, sat back in his recliner, and looked around the room smiling.  Company was good and much needed.

Dad is currently in George Washington Hospital.  He is due to be released at some point Tuesday, all going well.  I think this hospital stay is nearly behind us now and it sure has been a doozy.  Dad developed an infection in his abdomen, in the ascites.  The doctors believe something must’ve entered the catheter which is not entirely uncommon.  He has been there since last Tuesday (the 15th).  He met some wonderful doctors and nurses while he was there.  One of his favorites was an ER doctor who’s name was Charles but the rest of the staff referred to him as King Charles.  Dad told me to count my fingers after King Charles left, just in case.  He left a huge impression on my dad in a short amount of time.  One thing that’s for sure, dad’s attitude never waivers.  He’s always so kind to the doctors and tells them that it’s been a pleasure working with them and thank you so much for your time that you spent with me.  It just amazes me.

We’ve all spent some serious time on the metro lately so I’ll sneak in a metro selfie quick before mom catches me posting a picture of her!

img_7092

One of the things that we’ve talked a lot about is the need for dad to be in a hospital closer to home when he does have to make a stay there.  Did you notice Jack hasn’t been in this blog at all?  That’s highly unusual, maybe even unheard of.  The reason for that is dad being all the way in DC.  It’s just too hard on all of us making that trip back and forth.  Dad has promised to make his next, inevitable, hospital stay here in Annapolis.  That way mom isn’t traveling on the metro at night – and checking in with Aunt Ginny when she returns home, might I add.  Dad won’t be spending nearly as much time alone, with his thoughts.  Visitors can pop in and out much more frequently.  And best of all, Jack could even visit!

Looks like dad will be home in time for Thanksgiving.  We’ll be moving dinner to their house this year.  I’m imagining something in the living room with TV trays and dad’s new recliner involved.  Mom will be dining in her new car.

I am thankful dad will be with us for Thanksgiving dinner.  I am ever hopeful for Christmas, Dad’s two year diagnosaversary in January, and his birthday in February.  We’ll celebrate each one as they come and can’t wait to share them with you as well.

Oh look!  A picture of Jack and dad!

img_6908

 

Tacoma and Beginning the Study Chemo

unnamed-2

There were a couple of important things that were inadvertently left out of the prior blog that I’m going to lead off in this blog.  After I’m done, Melissa is going to take over and ghost-write (an interesting pun on many levels) the remainder of the blog. I’ll give her a proper lead-off when we get there.

When Gregg, Susan, and I went to Olympia for the tux fitting we made arrangements to meet with Thomas, Pam, Jake, and Cody for lunch and dinner, respectively. Mark couldn’t make it because he was working and, of course, Edward lives in California. We had a nice long lunch with Thomas during which we talked a good deal with him about the house that he and Megan are renovating.  He even brought in the plans to show to me so that I could see what they were up to. Beautiful, extensive renovation. So he and Megan are currently renting a condo next door so that they can be near the renovations as they occur.

We followed lunch with Thomas with the tux fitting and picking up the gown. The fitting took an inordinately long time for me. I had the tux fitted and measured in Annapolis and then “sent” to Olympia so I wouldn’t have to transport it on the plane. I say sent because that was what I was told — that I would have a fitted tux waiting for me.  In reality, they started pulling things off the shelf, none of which fit except the suspenders, bow tie and vest. I looked as though the tux were stolen from a clown, dusted off, and then handed to me. The young salesman insisted that everything looked great.

cimg3816

So I showed him the length of the sleeves which were at least an inch and a half too long. The shirt was an 18 1/2 by who knows what length sleeves — I  need a 15 1/2.  To add a little drama to my issues with the pants, I took off the jacket and sucked in my gut a little (no small feat) and caught the pants at mid-underwear. I heard a little gasp from Susan behind me and a snicker from Gregg. I didn’t know that they had stepped in behind me to watch what was now an animated discussion with the salesman wannabe. Thankfully, I  caught the pants. The experienced salesman immediately jumped in, completely re-measured and marked the jacket and pants, got an appropriate shirt, and put the suspenders on the pants before measuring me and marking up the pants. The alterations were completed and we left the store in about 40 minutes. I thanked the experienced salesman several times for stepping in before leaving the store.

Our dinner with Pam, Jake, and Cody was equally good. I didn’t eat because of the late lunch and diminished capacity (no wise cracks please) for food. I had an excellent pint and spent the rest of the time mostly listening to the banter and chiming in with a wise crack or a little dig as I’m wont to do. It was a good evening and Susan and Gregg had to run me back to Mom’s in Tacoma later than we would have thought. I was tired but felt very good.

unnamed

Steve and I had lunch on Sunday, I think, at Johnny’s Dock down on the Tacoma waterfront and behind what used to be Union Station. After lunch we stopped by to see his Dad for a little while. His Dad, Herb to his friends and Mr T to me, was in important part of my childhood after my parents were divorced in 1958. That was the year he moved his young family from Parkland to the 9 acre farm on 96th street. Steve and I met shortly after that and I spent much of my formative years at my second home located at the end of 98th street, through the barbed wire fence, and across the pasture. Steve’s Dad was a good substitute for the father I had lost. He was strict (which I probably needed), and unnamed-1willing to teach, which I soaked up like a sponge. I had chores which I didn’t mind at all because they were so different that what I had to do at home. I’ve been stopping in to see him for years, several years before Steve and I got back together. We had a good visit followed by a photo-op. I think he’s still pretty sharp for a 98-year old.

The following was written by Melissa with a few additions by my me. She wrote it all in the first person (from my perspective). Thanks Dawder!

Pat and I met with Dr. Ahlgren after returning from Tacoma to talk about our next course of action.  He explained two options to us.  Since the Abraxane has become too difficult to tolerate and we’ve exhausted the gamut of chemos known to treat pancreatic cancer, we could move to palliative care.  That doesn’t seem like something any of us are ready for so we immediately asked him to tell us about Option B.  It’s a study pioneered by Dr. Ahlgren in which O-MAX (a 4 chemo whammy) is administered throughout an 8 week period with no off-weeks.  O-MAX includes Xeloda (oral chemo famously known for its mouth sores), Doxorubicin and Mitomycin (both new to me), and my old friend Oxalyplatin, the bringer of Neuropathy, hip pain, and a good deal more unpleasantry.  I’m bracing myself for the neuropathy.  The Doxorubicin and Mitomycin are both enablers that prep the tumors so that the other two can hit even harder.

So, Option B it is.  I am mentally and emotionally ready to fight.  I sure hope I can convince my body to keep up.

I had my Week 1 infusion about two weeks ago.  All went by without a hitch and they loaded me with steroids before heading home.  I buzzed around that night and into the weekend before crashing hard.  I’ve continued to struggle with retaining excess fluid in my abdomen which leads to some serious crowding. The excess fluid began when the two peritoneal tumors showed up. The tumors secrete fluid and the surrounding peritoneal lining also produces fluid which crowds an already crowded space. Not eating much or drinking much has led to dehydration and now hypotension.  My low blood pressure kept me from getting my Week 2 infusion.  Instead they gave me two huge bags of saline to increase my blood pressure.  Seems a little counterproductive… fluid in, fluid out.  Reminds me of my old gozinta-gozouta routine. Gozinta-gozouta is a recycled phrase that I use to explain balance such as in a heating system. If you block the input, the output suffers equally which reduces the efficiency of the system. The fluid balance is much the same. I was given diuretics to reduce the fluid and fluids to increase the fluids.So far we haven’t addressed the underlying problem of the diuretics. I started that myself last night with one pill instead of two. I checked my BP at 3:00 when I got up to write because I couldn’t sleep due to hip pain — and the steroids. BP was good so we’ll see what happens.

I had Week 2 this past Wednesday, a week late. It went easily with a wall-clock infusion of about 3 hours. This is early Friday and the hip pain is here, worse than the old days with folfirinox. I sincerely hope that the pain is only around for just a day or so…

Jack is 2!  Can you believe that?  He was the life of the party last weekend.  Some of his favorite people were there to celebrate with him.  He really started to get the idea after opening a few gifts and was asking for “more presents” all day long.  His party was appropriately Thomas the Train themed.  He got a new train table and a few new engines for his collection.  He can name about 30 Thomas engines and it’s pretty impressive to hear him do it (he identifies them by the face).  I got him a red pick-up truck which he opened and yelled out “pa truck!”  He blew out the candles on his cake all by himself, ate his cake with a fork like a big boy, and generally partied like a rock star. I am so blessed and happy to be able to share his birthday.

Whoulda thunk this based on the statistics of almost two years ago. I’m blessed by all of you and the wonderful prayer network that supports us all. I am blessed by Pat who continues to live her vows.

I went back to the doctor Tuesday and had the paracentesis performed again.  They removed 4.1 liters of fluid – about 9 pounds.  It’s amazing how much better I feel almost immediately. Next paracentecis, I’ve requested that I be given a drainage catheter so we can manage the excess fluid from home. I’ve been to DC four days this week — somethings got to give.

I am still hypotensive (low BP) but hoping I will be able to eat a little dinner tonight and get some fluid into me.  I’m under orders to drink a half-gallon of Gatorade in addition to regular fluid intake and stopping my BP meds and the diuretics (gozinta, gozouta). Week 3 chemo is scheduled for next Wednesday and Thursday of next week.

We’ve not really talked about my cancer marker readings lately. Three weeks ago I was at 300 due to the ineffectiveness of the Abraxane. This past week it was 292. That may not sound like much but I am starting a new therapy and pushed week 2 so I am pleased that the readings didn’t go up. Sometimes just being stable is good!

Going Home…

 

So, I have to admit that with a couple of obvious exceptions I’m stuck for topics this time. I’ve had plenty going on with the cancer treatment but I really need to balance the technical part with something that most of you will find more interesting. Maybe if I just start….

I went to Alpine Lake with Andy and Bob, ostensibly to play golf. Andy and I played 9 holes and Bob managed to get in 18. Did I say it was hot? It was well into the 90s and I didn’t feel the least bit apologetic when I told Andy that I was going to quit at the turn. Andy seemed relieved to quit too. In the few days on the deck, we read, had a couple of beers, cooked some good food, and generally had a do-nothing weekend. It was nice for me to have some down time. Pat and I always seem to have so much on our plates.

Fluid, fluid, fluid. In a short period of time I had put on more than 20 pounds. In fact, I gained 11 pounds in a six-day period before getting the help I needed. It turns out that I was retaining fluid in general and I was also gaining fluid in my abdomen because the peritoneum was being irritated by the liver or the tumors and the newest peritoneal tumors and the peritoneum itself was secreting peritoneal fluid to ease the irritation. At the same time, it may be that the liver or something else was interfering with the lymph system so there was no way for the fluid to be carried away by the lymph system. So ascites (fluid filled sacs) formed between the layers of the peritoneum.

The Interventional Radiology group performed the paracentesis for me. They ran two drains using ultrasound to see where they were going. They had needles big enough to be called sir. The local anesthetic was only partially successful. 30-40 minutes later, they had aspirated just under four liters of fluid, or about 81/2 pounds.  Between the paracentesis and the diuretics, I lost 22 pounds in 6 days.

The cumulative side affects of the Abraxane have caught up with me. I have very little feeling in my feet; I’m having some balance issues; and my appetite is virtually non-existent. Pat and I both think that it’s time to switch to another chemo. I have a call into Jim to see where we go from here.

Jack continues to grow. He’s a very solid young man in both personality and statur
e. His vocabulary has expanded to keep pace with his broadening jack-eating-ice-cream-at-our-table
horizons. He uses short sentences to convey what he wants. He loves Thomas the train and I swear he knows the name of every one of the engines. The coffee table gets pressed into service as a train table and he’ll push the trains round and round and round. He still lets me read to him now and then but more often than not he’s turning the pages at his own pace. I am so very blessed to have had all this extra time to spend with him.

As I finish the blog I’m on the plane on the way back from Tacoma and seeing Mom and the rest of the family. I am encouraged by Mom. I know that she is having problems with osteoporosis, but her mind is sharp and she is still very successful living on her own. All she really needs at the moment is a little reliable help with yard care.

Gregg and Susan had a very nice service for their renewal of vows. They both looked real spiffy. Pastor Fisher actually wrote out the service for them so it was very personal and very well done. There were people from both sides of the family and from the church.. There were light refreshments afterward culminating in a meal at the Poodle Dog in Fife. Good on you Gregg and Susan for a very pleasant afternoon and evening.

gary-julie-and-greggGary and Julie were heading to Montana to spend time with the kids and grandkids. I found out afterward that they had delayed their departure a day to spend some time with me. I’m sure glad they did because we had the best free-ranging conversation together. I really enjoyed it. We even spent some time talking about some medication alternatives — information and reassurances I sorely needed.

Mark (Debbie was working) spent a couple of days with us mostly sitting around chatting. But, Mark also grabbed the mower and mowed the whole yard including the grassy area outside the fence. Mark continues to be my inspiration in grit and karin-freeman-working-on-the-weding-cake-2perseverance.

Karin came over from Eastern Washington on Thursday and stayed until I left on Wednesday. Karin as always was a joy to be around. She brings sunshine and helps to fill gaps in conversation. It was good to see her.

I was lucky enough to be there to celebrate Uncle Burg and Uncle Alex’s birthdays. Numbers 95 and 85, respectively. There were fifteen of us there with our family having the largest representation. I got to see a couple of relatives I hadn’t seen in 45-50 years. In the picture on the left above Uncle Alex is on the left and my Uncle Lohman is on the right. Uncle Burg is in the picture on the upper right. My cousin David and his wife, Bev are in the picture on the lower right.  All-in-all this was a very satisfying trip. I am so very happy I am able to continue to travel!

A little heads up on what may be coming… My CA19-9 reading was back up to the 230s so I will be changing therapies again.  That’s fine with me because the cumulative affects of the Abraxane were getting pretty onerous. We are scheduled to meet Dr Ahlgren the day after I get back.

Ireland, West Virginia, and Abraxane

In the latter half of July, we took a ten-day excursion to Ireland with Ger, Melissa, and Jack. IMG_4800On the Aer Lingus flight to Dublin we received the most pleasant surprise. Thanks to cousin Yvonne, Pat and I were upgraded to First Class.  What a hoot! We spent the first couple of days in Ireland with the McCabes just relaxing and getting used to the time zone change. The first few nights Jack was a trooper going to bed but he’d wake up after a couple of hours and sometimes needed a little comforting to get back to sleep. We spent some late evenings on the patio or in the front sitting room chatting about stuff. Molly and Jess were with us too. It was nice getting to know them better. While we were chatting outside one evening I mentioned a letter from Ross Weaver (on my Mom’s side of the family) in which he wrote about his younger, pre-radio years when evening entertainment often included sitting around talking with the older generation(s) and what it was like when they were young. Staying up chatting with the girls was very much like that.

We were in Westport for a couple of days with Melissa, Ger, and Jack. On the way to IMG_2409Westport we stopped in Tulsk, Roscommon. I talked with the local butcher for a few minutes and he told me that the Dolans (Pat’s Mother is a Dolan) had lived off the road to Castlerae and told me how to get to the site of the old Ogully church, cemetery, and well which are near the Dolan house. I thanked him and went outside to walk over to the old church and cemetery adjacent to the butcher shop.  Ger had been talking to “Young” O’Connor who knew of the Dolans. So I started talking to him and explained who we were looking for.  He knows the family and was able to confirm enough for me to feel that these Dolans would fit into the family tree with a little more research.  He gave us directions from the Ogully cemetery to the Dolan house.

On the way back from Westport, we found the house fairly easily despite the unmarked roads.  It was set back off the road a hundred yards or so. Ger walked up to the house first and started talking to the lady of the house and then motioned for me to come over.  She asked us in. I started to explain to Mary Bierne Dolan (note the coincidence of her maiden IMG_4937name, Bierne!) who we were, why we were there, and how I thought our two families might fit together. She knew enough about the Dolan ancestry to see how the relationship was possible.  In mid-tea, 87 year old Paddy (Patrick) Dolan walked in so we had a chance to re-introduce ourselves. After so many years of research (and a good deal of help from Bill and Mary Ellen (Dolan) Monahan) here we were chatting with someone who is almost definitely related to us. Beats census records any day! Patrick and Mary Dolan were such gracious hosts and very interesting to talk to.

IMG_4888Jack kept himself busy walking around the property checking out the sheep and the donkeys. The donkeys must have been a real hit with him because he gave them flowers.

But, I still have my homework to do.  I have to prove the relationships.  So I have the name and address of the local parish priest.  I’m going to send him specific requests for birth or christening records and marriage records and then we’ll share the findings with our newly found Dolan relatives and with the rest of the family.  I also have access to existing Irish census and Griffith valuation records and to period correct birth and marriage indexes. For an amateur genealogist this is really fun.

IMG_2419The McCabes hosted a McEvoy reunion on Saturday. If I’m not mistaken there were 58 McEvoys who attended the reunion.  The picture to the right is of Ger (second from left) and his brother and sisters. We all spent a lot of time talking together and getting to know one another. Alice did an amazing job with the party — There was a marque, food was catered, and the beers were ice cold. All of you know how much I treasure family so this was a wonderful day for me, as I know it was for everyone else there. Great “craic” was had by all.

IMG_2487Pat and I spent two nights in Kinsale at the Trident hotel on the waterfront. We had a great time trudging around the town, doing a little shopping, eating out, and searching for the perfect Murphy’s stout. We ate at Fishy Fishy the first night, a restaurant owned by an Irish celebrity chef. When we tried to pay for the meal we had the nicest surprise, Kathleen and Alan had picked up the tab — thanks you two!

We spent the next morning at  Charles Fort , a French-styled pentaganol fort that, IMG_2528along with James Fort, formed the town’s seaward defenses beginning in the 1600s. The high (literally, since our guide insisted that all roads are uphill in Kinsale) point of the Kinsale visit may have been the ghost walk which was an historical tour of the city buildings, walls, and cemeteries punctuated by some comic relief from the “ghosts.” Youtube clip of the tour The tour began and ended in a family-owned bar with the most pleasant surprise of very, very good Irish music at the end of the tour.

IMG_2566We had a very good time with our extended family in Ireland and we hated to say goodbye to you and your fabulous country. We’re looking forward to a chance to see everyone again.  We love you all so very much!

I had a bit of a rude awakening when I resumed taking chemo the week after we returned from Ireland.  It appears that just that one extra week off the Abraxane was enough to cause me to go through all the start-up adjustments with the Abraxane.  So I got a do-over on the night sweats, fevers, shooting pains in my legs, nausea, and the lack of appetite.  In spite of the deja vu all over again (thanks Yogi), I wouldn’t hesitate to take a break again for a worthwhile cause.

IMG_2580After finishing Abraxane cycle five we went to Andy’s place at Alpine Lake in West Virginia. It was a bit warm at Alpine Lake but comfortable compared to the heat at home. We hit the beach, went for walks, cooked together, and spent some quality time on the deck without the chiminea this year for obvious reasons.  Thank you Andy and I’m looking forward to a little golf this week.

So here I am in the beginning of Abraxane (GemAbraXel; Gemzar, Abraxane, Xeloda) Cycle Six.  Chemo dates are: Aug 23, Infusion; Aug 24, Injection; Aug 30, Infusion; Aug 31 Injection; Sep 13, Infusion; Sep 14, Injection; Sep 20, Infusion; Sep 21, Injection.

IMG_4870…and did I happen to mention the CA19-9 dropped another 17 points to 155? So over the last four results we’ve gone from 235 to 199 to 172 t0 155. As Gregg said, “Praise be!”

 

Celebration!

IMG_2350Steve and Jocelyn had a little backyard entertainment for their friends on the 4th. Jack and I got to share the fireworks for a few moments.  He was really intrigued with the fountains and I loved the way he reached up and took my two fingers and hung on. We also set off a few bottle rockets and some lady finger firecrackers.  Jack didn’t seem to mind the loud noises a bit.IMG_2352

I did say that we were setting off a few bottle rockets didn’t I? In spite of what the picture might suggest I was pretty careful with these. Flash to boom was unpredictable as were the fuses.  Since they were unreliable I used a nearby tree for my launch pad.

Melissa and Ger bought Jack a reconditioned iPAD for our upcoming trip.  One of the first apps Melissa installed contains pictures of all kinds of vehicles from passenger cars to construction equipment. There’s a red pickup that is similar to my canyon and every time it flashes up on the screen Jack says “my Pa.” It’s really cute. Speaking of cute, Jack has names for all of us: Ger is A-Da;  Melissa is MaMa; Pat (aka Gamma) is MoMa; I’m (aka Grampa) Pa; Matthew is Nattchew; and I think that Danny is simply Danny.IMG_2346

Jack’s latest back yard accoutrement is a shark pool (or a small swimming pool that resembles a shark.) He goes into the pool with his sandals on. The other day when he
was using the pool with his Gamma nearby he got her to come into the pool.  Of course Gamma took off her sandals so Jack got out of the pool and got them for her so she would be just likeIMG_2348 him.

Melissa and Gamma took Jack to a playground that is close to the flight path foIMG_2345r BWI.  As a result, Jack has a new appreciation (er, fixation) for all things flying.

Jack is sitting on my almost brand new 16 inch Ryobi 18V battery powered mower. I can’t help but think that if Jack looks cute sitting on it I must look ridiculous pushing it.

 

All of us (including Emily) went to Matthew’s house for an afternoon BBQ with sausage and chicken, some good salads, and a couple of adult beverages. Matthew and Dan did a good job getting the place ready for the BBQ.  The food was very good and we all enjoyed ourselves very much — especially Jack!

The strangest thing happened on the way to chemo last week.  We walked onto the metro car and sat down.  Pat made a little noise that I interpreted to mean I had bumped her but it turned out to be Danny sitting in the seat across from us. Danny was already a bus ride and a MARC train into his trip and still had a metro ride and another bus ride to go on his way to work at the National Harbor; we were just getting started.  But, what a hoot running into him like that.  So we got a nice hug and he made his five or six stop run on the metro and got off at the Eastern Market stop in Capitol Heights and went on his way.

The CA19-9 cancer marker has finally dropped a good bit (235 to 199) after multiple consecutive test results inching upward. Thankfully, it looks like the Abraxane has finally kicked in! Of course I’ve also lost most of my hair and what little bit of hair that’s left is bright white and cropped short.

Doctor Ahlgren made an appointment for me to try a procedure called Paracentesis during which ultrasound is used to view the abdomen and a needle is used to remove fluid that is trapped between organs and the peritoneal lining of the abdominal cavity.  It turns out there was no fluid so the crowding is being caused by organ swelling and tumor growth. I was hoping that there was fluid because I am pretty uncomfortable at times.

Next chemo dates are: 8/2 chemo and 8/3 injection; 8/16 chemo and 8/17 injection; 8/23 chemo and 8/24 injection.

 

 

Getting into Summer

Jack Ger and Dan in the Pool (June 2016)It’s the end of June already. The humidity is up and the evening thunderstorms are back. I’ve even been in the pool already. It was a joy helping Jack get used to the water after a half-lifetime hiatus. I plan to spend more time there this year and try to get myself into a little better physical condition. I might even work on my tan…

For those who are local to DC or those who might be watching DC’s woes with its metro (subway) system with interest since they also live in a subway-dependent society, we’re taking the commuter bus from Annapolis to DC for a couple of weeks. Our metro line (the Orange line) is cut in two on the West side of DC. We’ve opted to take the commuter bus into town rather than shuttle around the couple of closed Orange line stations on the outskirts of DC. Our wall clock 90 minute commute is now about two hours and fifteen minutes. The good news is that our line is supposed to re-open July 3rd.

Matthew is my chemo escort for the day. Because my chemo schedule slipped a week due to the low-grade fever my schedule collided with Pat’s appointments. I was lucky that Matthew was able to pitch in. As I’m writing the blog I’m in the Infusion Center waiting in chairs for the manual platelet count to come back.  The machine read result was 76,000 (76) wasn’t high enough so hematology is doing a manual platelet count to overcome my issue with platelet clumping. The reading should be back soon.

This is my second week (day 8 of 21) of the new treatment which I’ve dubbed Gemabraxel (Gemzar, Abraxane, and Xeloda). I start the Xeloda in pill form on day one and continue through day fourteen. Gemzar and Abraxane are infused on Wednesdays, day one and day eight. My body gets a rest days fifteen through twenty-one. Last Friday (day 9) I slept most of the day and then the pains in my feet started on Saturday. Apparently this is the uglier side of neuropathy which I had come to know simply as numbness mixed with a perpetual tingling in my feet and with an occasional shooting pain. Luckily, within 36 hours the pain subsided and I was back to “neuropathy as usual.” Jim still wants me to take Gabapentin which is an anti-seizure medication also used to control pain. I am resisting because I think I can manage the pain without it and it is addictive.

The upshot is that I have been free of side effects since Monday.  The second third of the chemo cycle is usually different than the first so I’m curious to see whether or not I have the shooting pains.

I had a CT Scan Monday, the 27th and Jim provided the reading today.  I’ll cut to the chase and provide the significant change first, then slog through the detail for the hearty souls who choose to mush on. The cancer has metastasized to the peritoneum (the lining of the abdominal cavity) in two locations; behind the navel (I have an outie, also known as a “Sister Mary Joseph node” — really!) and on the left side of the abdomen (near the descending colon).

First of all, I’m okay. This is the point where I usually tap my forehead and say: “I’m okay here;” then tap my chest and say that “I’m okay here.” I am mentally and spiritually okay with our new reality.

You’ll recall that my formal diagnosis is Stage 3 Locally Advanced Pancreatic Cancer. Jim reminded me that since the liver was involved in the beginning I have been metastatic since the cancer was identified 17 months ago. I have always said that as long as the cancer is confined to the abdominal cavity we stand a pretty good chance of at least staying even with the alien life form inside of me. I say we, because I am not in this alone — I have an army fighting all around me.

So the cancer is still inside of the abdominal cavity. I’m okay!

For those who chose to slog, you win!  Here’s a quick summary:

  • Pancreas – no change
  • Spleen – Small lesion remaining that is unchanged
  • Liver/gall bladder – There may be a small progression but the author of the notes indicated that a direct comparison is difficult because there is a difference in the ” contrast phase” between Monday’s exam and the exam conducted March 29th. I interpret contrast phasing to mean the difference in contrasting or highlighting of the tumors. That difference may account for difference in size and even a difference in count of the cancer lesions.  I believe that earlier documentors had simply punted by calling the lesions “numerous.”
  • Peritoneum – There are multiple new masses, the largest two were mentioned above. There are also some ascites which are alternatively referred to as wet masses or fluid build-up.  I assume that these account for the weight gain of three pounds over the last week when I was certain I should have lost weight due to compromised appetite and capacity.
  • Cardiac, Lungs, Adrenal Glands, Kidneys, Vasculature, Lymph Nodes, Bones and Soft Tissues – No apparent changes.

Matthew and I met Emily for lunch. It was good to see her and get the Readers Digest condensed version of her trip to Ecuador, the Amazon Rain Forest, and the Galapagos Islands. That’s a dream vacation for many of us. So what’s up next Emily?

My CA19-9 results from the June 22nd blood draw were 222, up from 215, which were up from 187 (I believe) from the cycle three weeks earlier. The June 29th results weren’t available Friday afternoon. I felt it was important to get the word out about the new masses in the peritoneum so I didn’t wait for the update.

Next chemo dates are: Infusions on July 13th and August 2nd; Injections on July 14th and August 3rd.

Your Irish (or Gaelic) Lesson:  Maith thú  — Pronounced Maw hoo. A loose interpretation is Good on you.