One tough infection

Tomorrow will be a week since dad was released from the hospital for this infection.  It's not been an easy week...for anyone. Dad still has the drain in his side to continue to clean out the abscess. He's on 2 antibiotics to kill the nasty bugs too. Problem is, dad has no appetite.  He's still very weak and has very little energy. Is this an effect of the drugs? The infection?  Or dare i it say....the cancer. I'm not sure.

Mom is the best caregiver.....ever. Anything he has a taste for, she makes. She flushes the drain, changes the dressing,  and stays on top of his meds.  She's there.

Prayer warriors,  please keep both my parents close to your hearts in prayer. Much love to all.......Jen

Would you like a dab of dijon mustard with that?

Um, no thank you....

Mom and I are sitting here at UMMC Baltimore, watching Dad sleep more peacefully than he was able to last night. It seems the pain is managed much better now. Thanks so much for all your prayers. 

So now to explain how we got to where we are right now....

After the ERCP last Monday, Dad's health was not improving. He lost his appetite. He was extraordinarily weak and tired. He pretty much stopped eating or drinking anything. He was beginnning to need my mother to help him get around, which....yeah, well....not a good time in the Snead house. On Monday, I made contact with Dr. Darwin and Dr. Jiang. They both responded and contacted Dad at home. The plan was put into motion to get Dad to UMMC asap. The issue, though, was that the hospital was full. There was no room at the inn, and there was another winter storm on the way. It was pretty paramount that we get into Baltimore Monday night, or he wasn't going to get there. I was fairly sure that even though Dad is a Christmas Eve baby, we weren't going to be able to secure ourselves a manger on the way either. His Drs were in close communication with us and worked whatever magic they did to get dad a bed, bypass the ER, and have him admitted directly Monday evening. 

A CT scan done 2am Tuesday showed that his liver is still infected with a monster, 5cm by 3cm abscess. A pyogenic liver abscess. Sounds lovely, doesn't it? No wonder he wasn't feeling better. The antibiotics that he'd been taking hadn't been able to take care of that part of his infection. 

Yesterday his team of docs eventually determined the plan of action to physically drain the abscess. Because of it's location, though, this consensus was not a decision at which all could easily arrive.  There was a lot of back and forth discussion as to whether or not this procedure could be done. It was a real possibility that the lung could have been punctured in the process, which, well...we won't go there. Yup, to stick a needle in his side to drain the pus out had to be timed precisely with his breathing. Dad's surgeon, Dr. Alexander, was confident it could be done. Others, however, were skeptical. (It appears, surgeons are a bit more aggressive in nature.) Sounds even lovelier, doesn't it? Evidently, these abscesses do not go away on antibiotics alone. So, if this abscess could not be drained, the septic infections would continue. 

Thankfully, the abscess was able to be reached without lung involvement, and boy did it drain! The infectious disease doc we met last night so proudly announced how much he loves pus, and based upon the volume of dijon mustard looking stuff coming out of Dad's side, there might be a prize involved. I mean, seriously. N-A-S-T-Y. No WONDER he felt so icky!  

So right now, Dad is resting fairly comfortably, and has slept most of the day. Percocet is doing her job beautifully, keeping his pain level reasonable. He's been able to eat a few meals and has his appetite back. Infectious disease docs are growing a garden with the pus to determine the bugs and the precise antibiotics to take care of the infection. The drain will stay in for quite a few days to make sure all of the infection is drained. Not sure of a discharge date and couldn't even begin to venture a guess. 

Again, I greatly appreciate all of your thoughts and prayers. God is good. We have made it this far in this cancer b/c of the loving support of our friends and family. Thanks everyone and much love to all.....Jen

Morphine....check....oxycodone...check....

...and those are just appetizers that haven't even come close to satiating the pain that Dad is in right now.

I promise when not on my phone that I will fill in the details.  For now, need my prayer warriors to pray for comfort and sleep for Dad. He is in excruciating pain after a procedure today. 

Much love to all who are doing those little (and big things) to help my parents and me while we are here.

Just Pray.....Please.

The Reader's Digest version of the last couple of weeks, which is also available in LARGE PRINT, if needed. 

Dad was released from Meritus 3 days before Thanksgiving. The infections were under control. However, the suspected root of said infections was the biliary tree, which still needed to be addressed to make sure no more infections occurred. Dad was given a 7 day script of Levaquin to make sure it completely knocked out the bacterial infections. 

We had a nice family gathering on Thanksgiving Day with Dad's side of the family and all of my siblings and nephews and niece. We ate a lot, watched a lot of football, and ate some more. 

Last Monday, I took Dad down to Baltimore to have his 4th ERCP done to take a look at the entire biliary tree. Dr. Darwin was able to put a stent inside the existing biliary stent. This is the 4th time Dad has had this procedure done, but for some reason, he had a tough time in recovery, and it took longer than usual to get the nausea under control and get him to a state where he could travel home. 

Well, he's not improved. Since then, his appetite has decreased significantly. Food tastes weird. He's very tired and very weak. I'm at a loss as to WHY. 

So please, just pray. 

"Mary, Mary, quite contrary.....

...how does your gut flora grow?

No silver bells or cockle shells, but Dad's got quite the bacterial garden growing. The cultures the infectious disease folks are growing showed a second type of bacterial infection -- enterococcus. The specific type hasn't been confirmed yet. It's still flourishing in the petri dish. Until that is confirmed, we don't know the exact antibiotic that will kill it.

We need your prayers. Dad's immune system hasn't even hit its lowest since finishing up 3 rounds of chemo, and he's trying to fight not only one, but TWO blood infections. It's like "double sepsis." Not sure if that's a real term, but it's the best way I can describe the current situation.  He's fighting it, though. The fever comes and goes. He sleeps a LOT (or tries to....hospitals aren't known for good night's rest). He's eating ok. His vitals are stable now. All of those are positive, and we're going with that. Thanks, prayer warriors! Keep them coming and going. For those of you praying to clear Dad of the klebsiella sepsis, pray doubly dose to rid him of the enterococcus too. Pray that the species of enterococcus IS of the variety that can be annihilated with an antibiotic. There is a slight chance of the alternative. Think positive, be positive, and pray!

Love to all......Jen

I sit here in Meritus Medical Center with my parents. Dad was brought to the ER last night for major fatigue, pretty intense chills, fever, and just plain, old overall ickyness. This started Wednesday night, but Dad is such a "good" patient, not wanting to bother the doctors, that he waited to see if his symptoms would just go away the next day.....because fevers, chills, and fatigue just do that???? Not to mention that he was told that if he experienced even ONE of these symptoms that he was to go directly to the hospital.

Let me catch you up a bit.....

Dad's been receiving chemo every Tuesday over the last 3 weeks. Just this past Tuesday was his last treatment of this first cycle. He starts up again Dec. 3rd. (His CA 19-9 marker had increased through October, so regardless of what that CT scan had shown after Cipro last month, the blood work showed that the cancer was on the move again.)

Dad's done very well tolerating this most recent cycle, as he has all the other ones too.  He's amazingly tough. Typically, patients receiving this regiment cannot do three weeks in a row b/c their white blood cell count drops to dangerously low levels. He was able to get all three treatments in! He was warned that after the 3rd treatment, though, he would definitely have depleted white blood cells. It was extremely important that he take every precaution necessary to avoid getting sick. He was told his body would have no way to fight off anything. Mom's been the best care-taker, making sure he has his daily 3 square meals, and nightly cocktails of prune juice, Smooth Move tea, and Ensure milkshake. Quite the bartender she's become.

Haven't my parents have become the most entertaining old people? Hard to believe there was a day when they placed in a dance contest at Studebaker's! At that time, the bartender was not preparing prune juice:)

Turns out, the fever, chills, and overall YUCK are another bacterial infection. (Last October his gall bladder kicked up and caused sepsis.) Dad is septic....again. The labs showed klebsiella pneumoniae in his blood. The timing of the symptoms and the type of bacteria that it is led infectious disease to believe that his medi-port was infected during Tuesday's chemo infusion. Um....yeeeaaahh. True to Scarlett O'Hara, "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow." Love me some GWTW...
The nurses working with him on Tuesday were not regular faces. One was "filling in" and the other was shadowing, and I let my guard down not stalking their every move.

Fluids and IV antibiotics have been the regiment today, and it is helping, and doing so quickly. As of this moment, Dad reports feeling much better than he did when he came in last night, while still not admitting that he really needed to come to the hospital. It seems his temp is staying normal without the help of Tylenol or Motrin. He's been able to eat and sleep. All "output" is normal and functioning.  Your prayers are working; he's doing pretty well considering. Not sure of a discharge day yet. Stay tuned.

Thanks, prayer warriors! Much love to all......Jen

So much to say, so much to say, so much to say.....

....and that's not just a song by Dave Matthews. I really have so much to say, so if you are even the slightest bit attention deficit, you may want to buck up on your Adderall or Ritalin in order to follow this blog post. It's a long one. 

A couple of weeks after my last posting in July, I had been doing a lot of reading on the latest technologies in stereotactic radiation. It got me thinking and wondering, so I reached out to Dad's radiation oncologist, Dr. Regine, to see if any of these treatments were an option for Dad when the time came for more treatment. In Dr. Regine's amazing fashion, I received an email response within an hour, copying a group of docs on his team. Next thing I know, Dad's being scheduled for a PET scan on August 26th and the full team is reviewing his case to see if this technology is an option to pursue.

Up to this point, Dad had never had a PET scan. Only CT scans. I hadn't fully understood what the difference was between the two, but I did know that the PET scan was much more sensitive than the CT scan. After the test and the clinic team review, Dr. Regine called me. He explained that pursuing any type of future radiation would only be necessary if there were areas to treat. According to the PET scan, there were NO areas of activity. "Not a whiff. Not a hint of activity," were his words. WOW! Can you imagine the great news that was????  Such glorious news. Yes, tumor was still there, but as far as cancer activity or growth, it was "dead."  Yup, we were happier than a camel on hump day!

Now, what the PET scan did show was a stricture, almost a blockage, of the area where his duodenum  is, and THAT didn't surprise me. Dad had been experiencing these "attacks" of severe pain and nausea and sometimes vomiting since April. We weren't exactly sure of the cause. Thought it was due to no gall bladder or his eating habits, or even the cancer itself. Over the summer, the attacks became more frequent and intense. This stricture could very well explain those symptoms.

Dr. Regine contacted Dr. Darwin, the GI doc who had performed the ERCP and biliary stent placements last fall. Dr. Darwin called Dad to schedule an ERCP to check it out and potentially place a stent in that area.

...but Dad was just too busy....

.... Dr. Darwin was prepared to do this procedure on September 9th (remember, they just did the PET scan on August 26th. They are moving quickly on this). Well, um, that just didn't fit into Dad's social calendar. Who knew retired, old people were so busy? (Are you kidding me???? Hello control......let me have you, says Dad.)  Seems there was a trip to The Greenbrier planned beginning September 10th, with a follow up trip to Tennessee to watch my nephew (and future Olympian) at his swim meet. Both great trips, yet both trips with these attacks of pain.

So, it was pushed out until September 23rd.

(ADHD folks, still with me?)

Turns out the area was almost totally blocked. Dr. Darwin said he nearly had a hard time getting the scope into the opening. He placed a stent to open the area. While in there, he also noticed an ulcer, which is commonly caused by radiation, about 10 mm in size. Dad started meds to treat the ulcer that day and within a week, had ceased to experience any of those "attacks." He started feeling fantastic.....just in time for October's CT scan and follow up with Dr. Jiang, which brings me to.......

October 8-9, 2013:
Same routine as months past. Dad's CT was on Monday with labs and appointment with med oncologist, Dr. Jiang, on Tuesday. Dad has maintained good weight. He looks good. He feels good. He's playing golf. He's mowing the yard and river lot. He and mom have been enjoying their boat in this perfect October weather. Life is good. Looking forward to another positive report.

(Sigh)

Welllllll........it seems the 10/8 CT scan showed 2 "hypodense" spots on the liver that the radiologist believed was metastasized cancer. (-insert pulling rug out from under us here-) Say wha? So I ask, "Are these the same 2 spots that have shown up before?" Dr. Jiang was very gracious and pulled up the July scan and May scan of 2013. Nothing. But in my head, I was fairly certain spots similar in description had been observed on previous scans on the liver, and mets was suspected. I was almost certain I had read that in a report somewhere along this journey. (Hold that thought in your heads, readers.....)

Dr. Jiang proceeded to talk about the next chemo and getting started, and again, Dad's social calendar is just not lending to having time for any of this cancer crap. I'm not sure why it can't take the hint and just GO AWAY.  October is not a good month for starting chemo again. There's a bonfire river party one weekend, and a wedding another weekend, and Ocean City just before Halloween.  Who's got time for cancer....let alone treatment? Apparently not my father. (Ain't nobody got time for that!)  Dad and Dr. Jiang negotiated on November 5th being the start up date for new chemo.

Next chemo is a combo of Gemzar and Abraxane. It will be a once a week Tuesday infusion that lasts about 3 hours, in Baltimore. Dad will get 3 Tuesdays in a row, and then get a week off. Then, another 3 Tuesdays in a row. Then done.

Well, MAYBE. Remember that thought I said to hold? Pull it back in.

The night of the appointment on 10/9 with Dr. Jiang, I was sharing the events of the day with my husband. When I told him about the liver spots, he too believed we had experienced that in a previous report. He told me to check it out.

Enter HIPPA violation of the year.....Last year, during one of Dad's office visits, his complete file had been left in the exam room with us. Let's just say, with "patient permission," I fully utilized the camera feature on my iPad. So glad I have that information.

I scrolled through the reports on my iPad, and found the CT scan from October 2012. Yup. There it was. Same description of liver lesions, and at that time, it was "very suspicious" for metastatic cancer. Yet, it had never shown up on any subsequent CT scans. So was this most recent scan of liver lesions cancer? Or was it also infection, as it had been last year? Let's dig into that, shall we?

That night, 10/9, I emailed everyone on Dad's team: Drs. Alexander, Regine, Francis, Jiang. I shared my picture of that report and asked about the possibilities. The last thing I wanted was to proceed with chemo, if it weren't necessary at this point. Let's exhaust all the possibilities.

The following day, I received a call from Dr. Jiang. She and the reading radiologist from the 10/8 CT scan reviewed everything I had shared with them. They determined that it was "possible" that the liver lesions could be due to an abscess, as had occurred before. Dr. Jiang prescribed Dad a 2-week script of Cipro to clear up any infection, to rule it out, and she scheduled him for a follow up CT on October 25th.

Dad finished up his Cipro last week, had his CT scan on Friday, and then he and Mom headed to Ocean City with friends for the weekend. I was thrilled to be able to call them on their trip to deliver some good news today. I talked with Dr. Jiang this morning. In her words, "The CT scan actually is good. The liver lesion is smaller and less defined. The radiologist read as probable abscess or a collection of bile fluid." 

I think I literally floated on air through the rest of my day.....seriously. This was THE best news to me in a very long time. The lesions are no longer believed to be cancer, but an infection. Hallelujah! 

There is still one more issue. The CA 19-9 level, which is the pancreatic cancer tumor marker. It had increased from July to October. However, last year dad's CA 19-9 spiked in the midst of infection then too. So, I asked if Dad could get a post-Cipro treatment lab done this week to see if the levels have decreased. Without the liver lesions, and if the CA 19-9 levels have decreased since on Cipro, there may "possibly" be NO reason to start new chemo up next Tuesday. Up to this point, Dad's social agenda hasn't lent itself to be bothered with any further medical issues anyway, so let's just go with that. Shall we? 

To all our friends and family who have kept those prayers coming and going over the last 13 months, THANK YOU! Your unrelenting support has been instrumental in how well Dad has navigated this stupid cancer. Please pray that new lab work shows a DECREASE in that level. Pray that stupid cancer stays inactive and shows no ability to perk up and start to show itself again. 

I am so sorry this post is this long. Honestly, though, I'm hoping it will be another few months until I have reason to compose anything new. No offense to the readers. I love you all:) 

Back to the Beach!

Celebrating "Parents' Night Out" @ Thoroughbreds in Myrtle Beach, July 2013

Happy, Happy, Happy!

June 12, 2013~ Celebrating Matt's birthday in Myrtle Beach, SC

Since last posting, Dad's been building his strength and stamina from finishing up that nasty Folfirinox in April. In May, the CT scan showed no growth in the tumor or the cancer, which is really great news. His CA19-9 level had decreased, and Dr. Jiang believed Dad was ready and able to take a nice, long break from any treatments or visits to Baltimore until July. What a great day May 14th turned out to be!  Woo-hoo! 

Since then, summer has officially begun and Dad's enjoyed all the sights, sounds and celebrations that it brings---river parties, boating, golfing, hard shell crabs, and vacations. The picture above shows the 5 of us at one of our favorite Italian places in Myrtle Beach. Good food, great drinks, and glorious company! As you can see, Dad looks great! 

Today was the follow-up appointment from yesterday's CT scan. It's always a little unnerving to wait for the results of these tests, especially when it's been almost 3 months since any treatment has been done, and you're talking about pancreatic cancer. It's a tricky one, and its behavior is not predictable. However, in the words of the Duck Dynasty patriarch (as well as the Snead Family patriarch....aka Dad), today was a day to be, "Happy, happy, happy!"

Yesterday's CT scan once again showed NO growth in the tumor or spread of the cancer, and the CA19-9 level had gone down again. Dad has also gained a little bit of weight since May and is feeling pretty good. Therefore, (drum roll please..........) he can continue enjoying a break from treatments and check-ups for another 3 months!!!!  Flying high and happy, happy, happy:) 

It's going to be a GREAT rest of the summer:) Me thinks a big 49th anniversary party might be in order for Mom and Dad over Labor Day Weekend. Stay tuned, my friends! 

To our prayer warriors~ THANK YOU and keep it coming and going! 

As always, much love to all

XOXO~ Jen

Turns out it IS possible to drink too much water......

So  much has happened since last posting. Let me bring everyone up to date since the golf trip mentioned in my last post......

In the weeks going into the last treatment weekend, 4/12-4/14, the big golf trip was coming up. The trip "officially" began on April 3rd. Dad traveled half the trip with a buddy the day before, and finished it up on the 3rd. There was a round of golf to be played later that day; unfortunately, only 4 holes could be tolerated. The temperatures were rather chilly, and one of the side fx has been sensitivity to the cold. The fatigue and weakness had taken its toll, as well. Thursday, April 4th brought chilly rain to the greens, and evidently Dad bowed out of any golf that day. Later in the afternoon on the 4th, I received a text message from Dad's buddy that they were returning home that night. Dad had begun to pee brown.......if you remember, that's what started this whole mess back in September. You can imagine the panic.

Turns out, it is possible to drink too much water. Blood and urine tests done Friday the 5th showed nothing to be really concerned about, which was a huge relief! Evidently, Dad had been drinking too much water, and it had flushed his system almost free of potassium. The balance of sodium and potassium throughout his body was out of whack, and had concentrated all the other waste materials in his urine, making it a dark color. The recommendation was to stop drinking water, and load up on Gatorade for hydration.....something with electrolytes in it, rather than just water. Within a couple of days, all was "clear," but Dad was having a tough time bouncing back from the Easter weekend treatment. He was just so tired and weak, and just could gather only the energy to climb their steps. With each treatment, the weakness and fatigue and magnitude of side fx have increased. With the last treatment right at his heels at that point (4/12-4/14), it was concerning as to how well the 4th dose of Folfirinox would be tolerated, and let's just say there was good reason for concern.

4th and final treatment weekend: 4/12-4/14

On or about 4/16, Dad really started to feel lousy. Historically, that crappy-icky feeling didn't kick in so early  after a treatment weekend, and when it did, it didn't last very long. This time, however, not so much. The last 14 days have been really rough. Dad started vomiting at one point. In all my life, I don't believe I have ever witnessed my dad getting sick like that. It's like there has been some tax law against it all these years that all CPAs must follow, and the rule follower he is..... he's just never been sick. He's lost weight. He's needed to receive two bags of IV fluid to help with dehydration. Sigh....it's been stressful and exhausting for him and Mom. Through it all, though, he's been a trooper, trying to maintain some semblance of normalcy. He even mowed the lawn. (Yeah, I know. That may have been too much.) He's eating well, considering how he feels, trying to maintain a good weight. Of course, my mother is a great cook, which helps!

If you remember, the CA 19-9 cancer marker had decreased quite a bit....down to 289 after the first treatment on March 1st. A major source of excitement for all of us. That was the best news in months. Well, unfortunately, for some reason after the 2nd treatment on March 15th, that number increased to over 400. Dr. Jiang was not sure why, but didn't seem to be overly concerned; it is just one indicator and not always reliable, as there are other systemic issues that can cause that number to rise. We would find out at the 4/26 follow up appointment how that number responded after the 3rd March 29th treatment.

Last Thursday, Dad had a CT scan done to check the effect of the chemo on the tumor and surrounding tissue and organs. Our hope was the tumor had continued to decrease in size after the 4 rounds of Folfirinox.  Dr. Jiang's hope was that we'd see either a) no change (which also means no growth/mets) or b) a shrinkage of the tumor. On Friday, we learned that the scan didn't show a remarkable change in the size of the tumor. It had stayed the same, which is good. We also learned that after the 3rd treatment, the CA 19-9 level shot up to 1000. Not the news we were hoping for, and therefore, a very solemn conversation with Dr. Jiang ensued.

We left on Friday feeling quite deflated. Yes, it was very good news that the tumor was the same. It did not appear to have metastasized beyond the pancreas. Yet, that darn CA 19-9 increase crushed our spirits. So we wondered what the heck was going on that the scan was not showing. After all, we had been fooled before by a scan that presented itself in our favor. Well.....hang tight b/c we did receive some good news today.....

Dr. Jiang called Mom and Dad today to share the results of the CA 19-9 number that had been ordered as part of his blood draw on Friday. Mom couldn't remember exactly what it had gone down to, but it had DECREASED a little.....700 or 800. Again, Mom didn't remember the exact number, but there has been an observed decrease between treatment 3 and treatment 4. Praise God! This new info is fantastic to hear!

Our next appointment is May 14th, (which by the way is on the eve of my sister's 40th birthday). At that time we talk further about the next type of chemo to be administered (Abraxane/Gemzar combo), and at what point that new treatment would be introduced. Dad was really hoping to get a significant break from any kind of treatment. Let's hope with this new news of the decrease in the CA 19-9, he can get that!

Keep the prayers coming! It has been an extraordinarily difficult last couple of weeks.....for everyone. Dad has felt super icky and is slowly shedding that, but his journey continues beyond the completion of Folfirinox. Please pray that those numbers keep going down, that the tumor stays status quo (although a complete disappearance would be nice!). Pray that Mom has the strength to continue to give the care she has. (Dad can be....ummm.....at times.....a somewhat grumpy patient.)

Your love and support is always appreciated.....Much love to all!  Jen

615......

In Friday's post, I mentioned that the CA 19-9 decreased from 315 to 289. It was actually 615 in November. Not 315. Even better!

CCLXXXIX = ?

17^{2 = ?}
(8 + 9)^2 = ?


Are you smarter than a 5th grader?
Hint: The answer is the same for all three math problems above. Keep trying.......don't give up! You can do it!

Ok, ok.....well, if Roman numerals aren't your strength, or figuring Friedman numbers, hopefully 17 squared (17 x 17) helped? Yep, the answer is 289. Why, may you ask, is a math lesson part of today's blog? It's not the lesson that is important, but rather the answer to each one: 289. That, my friends, is what Dad's CA 19-9 count was on March 15th BEFORE the 2nd round of Folfirinox. CA 19-9 is the tumor marker that shows up in blood work that is used to measure the effectiveness of the current and prior treatments. When we first started this whole venture back in October 2012, the CA 19-9 was almost 1400. The normal range is 0-37. The chemo radiation combo of treatments in the fall helped drop that number quite a bit. On 11/30/2012,  the count was 315. The fact that after only one treatment the number dropped to 289 is a good sign that folfirinox is not giving that tumor a chance to grow. We'll take that!

Today Dad and I are sitting in Room 23 of the infusion center here in UMMC Baltimore. The oxaliplatin was just started about 30 minutes ago. Dad's napping. Typically, he starts to feel really icky about 60 minutes into this drug and requires a shot of Zofran. Once he gets that, he's good to go the rest of the day. We have about 4.5 hours more ahead of us just in infusion time, and then we'll head home to WV. Easter Sunday night, Laura will come back and disconnect the chemo, flush the port, and Dad will be able to roam free without being hooked up to anything. Free!

On Tuesday night, Dad plans to head south with a buddy to what he hopes are warmer temperatures. It is time for the annual golf outing, or what I refer to as the "testosterone fest." Sixteen guys with beer coolers and golf clubs. By the end of the trip I think they're all pretty pickled. What happens in MB, stays in MB!

When Dad returns, it will be time to rest up and re-coup for the 4th round of chemo, which begins on April 12th. After that last round, a CT scan will be done to take a look at the tumor and see how it is responding to Folfirinox. Lots of prayers that the tumor is losing not only the battle, but also the war. Lots of prayers that Dad can then get a break from chemo for a bit. Lots of prayers that my parents can enjoy all of the trips they have planned over the next several months. Many thanks to everyone who reads this blog. We truly appreciate your support! Have a wonderful Easter and much love to all......Jen

The Neglectful Blogger...

Yeah, yeah, yeah.....I know, I know....it's been way too long since I've kept everyone up to date on the goings on with Dad.  My apologies. There's not been much time lately. I've been a neglectful blogger. Anyway, let me bring everyone up to speed.....

Just today, Dad was disconnected earlier this evening from the latest infusion of Folfirinox. This weekend was Round #2. In two weekends, March 29-31, he will undergo Round #3. He will undergo 4 rounds total, and then the team will run some tests and scans to see where things lie.

So on Fridays of these chemo weekends, we pretty much spend the entire day in Baltimore in the infusion center,  receiving the most toxic of the drugs first, Oxaliplatin, followed by a combo of others. (If you research this Folfirinox, you'll see it is a combo of several different chemo drugs, which are introduced into the system over a 3 day regimen.) We've typically been finishing up on these Fridays around 5pm or so. By the time we get home, the in-home nurse also gets to the house; she hooks Dad up for another 46 hour infusion of the rest of the ingredients of the recipe that constitutes Folfirinox. Having this in-home treatment has been very convenient.

I'm sure as you're reading this blog, and perhaps also reading up on this chemo and the side effects, your question is, "How's he handling it?"  Honestly, he's been a ROCK STAR! I am truly amazed with how well he has tolerated the stuff. The other meds he's been taking during the treatment have really curbed the nausea. He's had very little of that. I know that's always a big concern. He's had a serious case of the hiccups both times. (He's actually hiccuping beside me right now.) Bowel issues have cropped up, but eventually "work out" (literally). His feet have been tingly. Overall, though, he has done very well. There has not been a side effect that he says he cannot handle. But you all know him, he can tolerate a lot. His appetite has been very healthy, so he's been able to continue to enjoy my mother's yummy cooking, which has helped keep his weight up.

Just to share some indicators of truly how well he's tolerated the treatments, everyone should know that he played 8 holes of golf last Sunday.  He also worked with Mom to get the yard raked and cleaned up for spring. The warm weather, and being able to be active has encouraged his energy level. He's doing what he wants to do, and for those of you who know him, that's important! In fact, I originally scheduled the treatments to begin the weekend of Feb. 22nd. However, that schedule conflicted with his social calendar. Who knew? Guess I need access his Google Calendar more often. Yeah, he had already made plans with the super-awesome neighborhood folks that ARE my parents' family to attend an all-you-can-eat (and beer to drink) oyster feed on Feb 24th. He didn't want to have to haul around the chemo pump that day, but more importantly, he wanted to be able to partake fully without feel sick. Awesome, isn't it????

Today we had a great visit. It's been several weeks since Sam has been around. They enjoyed a little bit of time with him, to include a heated game of "Go Fish!" Matt set Dad up with a new email address. If you've missed your daily emails from Dad, then please send Dad an email to jhans1941@gmail.com. This will be the email address that he will be using from now on. If everyone sends him a message, it will save him from having to copy his contacts into ....... oh wait, actually it will save ME from having to copy his contacts from his First Action Team address book to the gmail one. Just kidding (sort of)! Seriously, please send a little message to him. I know he'd love to hear from everyone and get connected again.

Please keep those prayers coming. Yes, I believe my dad is an amazingly strong man who can tolerate a lot, but I also believe the power of prayer has also played an important part of each day. We cannot thank everyone enough for your continued support and love.

Time to get out the door back home. Much love to all......Jen

Super Bowl, Baby!!

As you can tell from these pictures, the boys had a GREAT time in NOLA. They were all a little tired on Tuesday, feeling as if they themselves had played in the game, but I think the aches and pains were worth it. Yes, they were all in the Dome when the lights went out, but don't really have much to say about it. The experience of being here through it all has far outweighed a little power surge. 

Today Mom and I are in the waiting area once again down here in Baltimore, hoping Dad is released from Same Day Surgery soon. He had a medi-port put in to assist with systemic chemotherapy in the coming months. Since the tumor cannot come out, the plan is to work toward pushing this cancer into remission.....keeping it from spreading and growing via more chemo. Dad responded VERY well to the first treatments, shrinking his tumor by a full centimeter. We pray that he responds as well to this chemo. "Folfirinox" is the name of this next therapy. It is a combination of 4 different drugs, released into his system throughout a 3-day schedule. Mom and Dad will only need to come to Baltimore once every two weeks to get started on Day 1. Day 2 and 3 will be released through the port while in the comforts of their home, with the cats. A nurse will come to their home to help take care of the port and treatments on Day 2 and 3. This will last for 4 separate treatments, about 2 months. 

To my prayer warriors, please continue more than ever! This chemo could potentially deliver some side effects that Dad may have a difficult time adjusting to. Please pray his side effects are minimal and that the cancer cells cease to spread! 

Many thanks for all of the love and support everyone has shown my parents. They have TRULY loved receiving the cards. Some of you are still sending them (Thank you, SG:)). 

Hugs and love to ALL......Jen

 

More than 70+ Cards!!!!

By the pictures attached above, hopefully you can tell that my parents were overwhelmed with cards! I was able to spend Saturday with them for Mom's birthday, and go through some of them, but there were SOOOO many! Thank you, everyone! Many of you are VERY funny:)

AND....not only did you far exceed the goal of 70, but you may have also helped the US Postal Service pull out of debt? Well.....maybe not, and I shall refrain from further comment on that;)

Tomorrow we go down to Baltimore for post-op appointment. We also requested a "Multi-D" appointment so that we can meet with all 3 docs on the team at the same time. What a logistical nightmare that was....
We hope to have our questions answered, or at least be able to make decisions about next steps and whether those next steps are at UMMC, or perhaps at another cancer center. Not sure. Stay tuned.

Topic shift and on a MUCH happier note. Dad, Jeff (my brother), Marc (brother-in-law), and my husband leave Friday for New Orleans. They are SUPER BOWL BOUND!!!! GO RAVENS!!!!!!!!!!!!!

Thank you, everyone, for sending those cards along. It was great fun to be greeted each afternoon with so much mail. It was a nice distraction for them both. I was not there to observe the process, but knowing my parents, it went something like this:     Dad opened each envelope with an official letter opener (careful not to tear the envelope), took out the card and read it silently, then passed it to Mom, who read each one out loud, as if Dad needed help with the big words. What a pair they make;)

Please continue to pray for healing within heart, mind, and soul. This journey continues to present its challenges in all of our hearts, minds, and souls.

Much love to all.............Jen

We are home. ...

Dad was discharged this afternoon. The team of docs are meeting tomorrow morning to discuss next steps. Preliminarily, it seems more chemo via a port is being recommended. Potentially, if dad responds to this like the first round of treatment, the tumor may be resectable. Please pray purposefully for the cancer to dissolve from the hepatic artery so that it can be removed. 

Thanks everyone!  Love to all.....much!
Jen

Cancer is stupid....

and apparently so am I. Duh.....you need an address!!!!

Nancy Snead
James Snead
72 Rio Lane
Falling Waters, WV 25419

Mom and I were here before 6 this morning so that we didn't miss rounds with the surgical residents.  Dad was already awake watching the news. The surgeons finally came parading in a little after 7am. They didn't really share anything new. They just reviewed what had been "discovered" during surgery yesterday with the involvement of the hepatic artery. They confirmed for dad that tumor removal was not a viable option anymore. When they left it was a very quiet room, to include lots of head rubbing, analyzing, and thinking.  At that point, I took Mom out to get some coffee, and let Dad alone with his thoughts for a little while.

A medical oncology fellow with Dr. Jiang's office visited, as well. I really liked him, and he reminded me of my own medical oncologist. He checked on Dad's pain and incision and asked some general questions about family histories of cancer. He said the team is going to work together to determine next steps.

Right now, Dad's in pain. He can push his button every 8 minutes, so I've set a timer for that and wake him to push it. He's going to be permitted clear liquids later today. Right now he's got the ice chip thing going on.  He's been rocking out to bluegrass on Pandora, which helps drown out the hallway noise of pagers, phones, and inane chatter.

This  blog is getting over 200 hits a day, and I hope that volume of interested individuals helps me with a little something fun. My mother's 70th birthday is January 27th, next Sunday. When my dad turned 70 last year, we had a big surprise party for him at my house. It was so much fun! The plan has always been to do the same for Mom, but when this stupid cancer thing came up, that changed things. So, then we hoped that Mom's best gift would be to have Dad home cancer-free for her birthday next week, but now this stupid cancer thing wrenched up that plan too. I know that all of you want "something" to do to help support my parents right now. Here's your task: Find a card store. Look for funny and/or humorous get well cards for Dad. He is not easily offended, so have fun with whatever you find. Then, go to the birthday section of said card store, and find a funny/humorous birthday card for my Mom. My goal is for Mom to receive at least 70 cards for her 70th birthday. If you do not directly know my parents, please feel free to participate as well, and just share your relationship in the cards. I foresee Dad being discharged mid to late next week. Carrying this heavy feeling home will bring on a new host of emotions, but how wonderful it will be to experience overwhelming support (and humor....the humor thing is important) when the mailbox cannot handle the load of get well and birthday wishes just waiting to be opened and read. It will be a good distraction and redirection from reality, even if just for a little while.

Mom's pastor was here this morning. We prayed together around Dad. What a warm feeling. I ask my prayer warriors to keep on keeping on. I'm not giving up on surgery. I'm not giving up on cure. I'm not giving up on a miracle either. Keep on, keeping on!

Thanks for the comments and emails. I love you guys!
Jen

Not the conversation I wanted to have....

When Dr. Alexander told us this morning that Dad was no longer a candidate for the whipple, I asked  him when he was going to tell Dad. He said he didn't want to tell him today b/c Dad would still be under anesthesia and would not remember what he was told. I know Dad, though. I told the doc that when Dad wakes up in recovery, the first question he is going to ask is, "What time is it?" When the time is mid-afternoon and not evening, he's already going to know that the surgery didn't progress as planned and start asking questions of me.

I hate when I'm right....

Mom and I were called back to recovery around 2:15. We were only allowed to stay until 2:35. Dad was sound asleep when he first saw him, which was good, b/c Mom and I needed a box of tissues. Just the thought of the news that he was going to hear when he woke up.....*sigh*

About 5 minutes into our visit, he woke up and said.....(wait for it....wait for it...wait for it)
"What time is it?"  I acted like I didn't hear him hoping that he would really just fall back into drug sleep. No such luck. Finally, I had to tell him it was 2:30. Then he said, "So what'd they say?" Again, I pretended like I had a sudden hearing loss, hoping sleep would take over. No such luck. Of course, it hadn't really been a day of good luck.

Me: "The good news is, your infected gall bladder is gone and that drain is gone. However, they were not able to take 'it' out." (go to sleep, please go back to sleep....for goodness sake you are all drugged up, can you please be like normal people and sleep this off?)

Dad: "Why not?"

Me: (if I could just find that pain button right now, I'd push it) Well......they found that a major artery was involved with the cancer, and it just wasn't safe to take anything out today."

Dad: "Oh."

And then he fell back to sleep and I thought that perhaps he wouldn't remember anything I said. Good, I am off the hook.

NOT! He woke up again and picked up our conversation where he left off.

Dad: "So what's the plan with that tumor then?"

Me: "I don't know, Dad. I don't have any details. The team is getting together to problem solve next steps. I'm sure Dr. Alexander will go over everything with you later." (Now can you please stop asking me questions? This is not the conversation that I wanted to have.)

I'm used to telling parents things they don't want to hear, but need to hear. Typically, though, it's not my own parents.

So now Mom and I are back in the waiting room. Dad will be moved to his room when he comes out of anesthesia a little more and we'll be able to go be with him. I hope by that time someone else has had a talk with him. I could really use a room to just go scream in right now.

Prayers now more than ever, please!

Much love to all....Jen

Update......

I wish I had better news to share. The surgeon came out about an hour into surgery to tell us that he cannot proceed with the whipple. Turns out, the cancer grew a sheath around an artery...something tests, scans, and such cannot pick up. Our options at this point are to investigate treatments to force the cancer into remission.

I've never been hit by a car or truck or train, but I would imagine that it feels something like this very moment.

Please keep praying for Dad's spirits when he wakes up. This news will impact him more than the initial news of the cancer.

Much love to all....Jen

Game Time

We arrived here around 6:15 this morning. Dad has been prepped and they just gave him some happy drugs for his ride to OR 21. The actual surgery will not begin until 10am, and then it will be at least 6 hours. Will update you as we are updated. Dad was in great spirits!

Love to all.....thank you for the prayers!

Jen

Happy New Year and Hello 2013!

Happy New Year, Everyone!

It's been all quiet on the blog-front over the last month, but busy nevertheless! Dad finished up all of his treatments on December 6th, got to ring that bell, and head homeward bound to "almost heaven" for six weeks. It took him about 7-10 days after he finished treatment to get his full appetite back, but he did and boy did he enjoy every bit of holiday cheer imaginable! And I mean every bit of holiday cheer! His homework assignment from his doctors was to gain weight, and it was an assignment Dad took seriously. It was great to see him enjoy all the joys of Christmas and the New Year with family and friends. It made the last several weeks go by very quickly.

Mom and Dad spent Christmas Eve and Day at my house. Later in the week we all headed down south to Tennessee to spend a few days at my sister's house. Came back December 30th. Dad retired from his CFO duties, effective 12/31/12.....

wait....welllllll....that's not really true.

It's not that I'm lying, it's just that.....it's supposed to be true, but it's not really b/c he still goes to work everyday. I'm not really sure how that cord is going to be cut, but anyway there was a really awesome retirement party for him, and it was great,  and you'd think that would be a hint, but.....he's still showing up.   Oooohhh, what did he say today? Yeah, that's right....he's "SEMI-retired." That was the phrase I heard him use today, "semi-retired." It took him 5 years between talking about retirement to get to "semi-retired," so I guess it may be another 5 years to go from "semi-retired" to "full" retirement? Good luck with that one First Action Team;)))

Any-whoooo........

Believe it or not, Dad's surgery is NEXT WEEK! Yikes, the time did fly by. Today we spent the day in Baltimore with the oncology team and the pre-op folks. Below are my notes and it all looks good....VERY good:)

Today's vitals were all very good:
Weight -- 182.7 lbs
BP -- 125/76
Temp -- 36.9C
SpO2% -- 96
(There were discussions about stools....and not the ones in a bar. Thought I'd leave that part out. You're welcome!)

Dr. Alexander's exact words in italics.....
"The most recent scan (performed last Thursday) looks great. (Yes, "great" was emphasized.) There has been a measurable decrease in the size of the tumor. (Um, that rarely happens with pancreatic cancer....thank you prayer warriors!!!!!) It should peel out very cleanly. It is still abutting the vein, but we are prepared for that. The purpose of this surgery is curative intent --  we get this growth, with all surrounding tissue that may become affected by the tumor, out so that once you heal, you can resume your normal active lifestyle."  

....and then.......Dr. Regine and his right-hand wo-man, Martha, also paid a visit. They were also incredibly pleased with the results of the scan performed last week. Dr. Regine came barreling in the exam room like Kramer entering Seinfeld's apartment. Spirits were high all around.

Can I get a "WOOP-WOOP?"

Next Wednesday night we will head to Baltimore and Mom and Dad will be reunited with their long lost hotel family at the Tremont (there's got to be a cheesy reality show in there somewhere, right?) Surgery is scheduled first thing on the morning of January 17th. Surgery will last 4-5 hours. The surgery is called the "whipple." The main concern coming out of this surgery will be the new connection sutured between pancreas and intestine. There will be a drain put in to "police" the pancreatic juices to make sure they do not enter his system. The drain will be in for at least 5 days and they will take out when no juice is draining. Dad will be in the "Intermediate Care Unit" for 2-3 days. Visiting is a somewhat limited. Jill and I won't be able to spend the night with Dad while he's in this unit and totally harass the hospital staff throughout the night, but when he's moved to the regular hospital floor, we'll be there to make up for lost time. His total hospital stay should be around 7-8 days, provided all goes super swell. Sometimes for folks over 50, patients may need to go to a rehabilitation unit prior to going home. However, Dr. Alexander didn't feel that Dad falls into this category. He believes that Dad is in great condition for this surgery. Plus, the rehab thing doesn't fit into our plan of having Dad home for A) Mom's 70 birthday on January 27th, and 2) Super Bowl on February 3rd. Priorities, folks!

Over the last month, our family has really appreciated our time together. We've reflected upon what we've been through over the last couple of months while still peeking at what's ahead. We know that we are blessed with the greatest of friends, who are also "family." We are so thankful for all of you. We ask for you prayer warriors to turn it up a notch as Dad moves forward into what we hope is his final step in annihilating this beastly cancer. Now that surgery is on the horizon, the blogs will post more frequently now. On the day of surgery, I will keep everyone updated! In the meantime, thank you for all of your prayers and love and support. I'm sure we'll be leaning on you all again soon!

Have a great night. Much love to all.......Jen