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:)