The Comforts of Home.....Finally!

Many apologies to everyone for not updating you this week. Been playing catch up at work, and home, and SLEEP, but I'm not so sure I've accomplished any of the aforementioned. 

Here's the scoop:

Dad was discharged from UMMC Monday night with a handful of new meds, and a drain coming out of his back to help the gall bladder function, and (hopefully) to prevent any further infections. After settling back into the routine of "home away from home" at the Tremont (who continue to be AWESOME!), he was finally able to get some decent sleep.....no one to come in and change the trash, take his vitals, or just be loud for some random reason. Just the hum of his own snoring and Mom playing Free Cell (or "sickle cell," as Dad calls it) on her iPad. 

He and Mom have been learning the ropes of taking care of the drain and doing well with it. Dad was able to complete an entire week of treatments this past week--radiation each day and chemo on Thursdays. He's begun to feel a bit icky after the chemo, but the zofran for nausea has worked very well for him. Getting a full week in has provided the reassuring sense that even though last week's infection created another bump in this journey, we are well on our way to annihilating this cancer. In fact, Wednesday was a great day. Dad resumed his walking and trekked the 8 blocks from the hospital to the Tremont! Rock star! 

Yesterday I went down to Baltimore to get Mom and Dad and to be present for Dad's appointment with Dr. Jiang, his medical oncologist. One could tell by her body language that she was very pleased with Dad's progress since last week and she was MORE than thrilled with his blood work. The tumor marker number had decreased by almost half from last week to this week. That decreasing number means that the treatment is right on track and doing what it's supposed to be doing---killing the cancer! We are halfway through with 13 radiation treatments, and 2-3 more chemo treatments to go. Typically, surgery is 6 weeks after the last treatment, which puts a surgery date for mid-late January. Although I've earned an "Honorary Medical Degree" from the UMMC radiation oncology team (that's a story for another time), I'll leave determining a set surgery date up to his regular team. If, by chance, my professional opinion is sought (and one never knows), I will shoot for a date 2 weeks prior to the Super Bowl (Jan 21st would be perfect) so that Dad will be able to watch the game in his own house. I believe my approach to setting this date will afford Dad the 6 weeks to heal from treatments AND meet his sports needs. It's somewhat of a "holistic" approach, don't you think?

This morning (Saturday), the plan was for Mom to go her way for a mani/pedi/hair day, and Dad to go his way to the office (yes, that meaning he's STILL not retired) and hair day...each driving themselves. This is a great sign b/c I don't think Dad's driven in over a month. He's just not felt the strength, and there's nothing like independence to boost your mental spirits. This is also great b/c I think they are spending WAY too much time together,and their personalities are ebbing and flowing and become unrecognizable, at times. Everyone knows Snow White and the Seven Dwarfs? Well, I have felt like Snow White this past week, observing each of them transform through phases of at least 5 of the Dwarfs: Happy, Sleepy, Grumpy, Dopey, and Doc. Oh wait, let me add Bashful. Mom tends to look that way then Dr. McDreamy comes in the room. 

Today is a beautiful fall day. Mom and Dad are in their own home with their feline kids, at least for a little bit. We look forward to having my sister's family come in on Tuesday in preparation for Thanksgiving at my house. Although recent life events have given all of us reason to be "grumpy," God certainly has also given us reason to be thankful for His many blessings. He has blessed us with the family and friends who tune in to this blog to seek updates. Your prayers and cards to Dad have provided more support than you'll ever know. Yesterday, Dad had 2 weeks worth of mail to go through. He enjoyed each card. In fact both of my parents have. It's just nice to know that you're thought of and prayed for. An old classmate sent a newspaper clipping from Dad's high school football days. Another colleague from Kiwanis sent a dollar coin, as a "dig in the rib" to Dad. That kind of stuff is incredibly appreciated. Thank you! 

I hope to get at least one more blog in prior to Thanksgiving. If I don't, I hope everyone enjoys each moment with their friends and family next week. 

Much love to all......Jen

Just a quick update...

Within the last 24 hours, the nose tube and the pee cath have been removed. Yay! That has made a nice difference in how he feels as a human. He's still experiencing excruciating pain, as it still vacillates between an "8 and 10," so he's still prescribed regular morphine shot every 3 hours along with 1000 mg drip of Tylenol every 6 hours. We still have an inflamed gall bladder.

This morning's news from the Grey's Anatomy Team is hopeful. Dad will be able to start clear liquids this morning. If that settles nicely and doesn't flair anything up, he'll be able to have small amounts of a bland, low-fat diet later in the day.   I know he's hungry and maybe a few calories to mix up the morphine may help curb the "grump factor." Yeah, we got the grumps. He's tired, hungry, and getting frustrated with all of these complications. Plus, the hospital is not a place to expect to get rest, for any of us. Sheesh! Do we REALLY need to come in and change the trash that's NOT full at 1:30 in the morning? And bang every piece of furniture while you're at it?

So, since I've started this entry, Dr. Engelman with Radiation Oncology has been in. Believes Dad looks a million times better than yesterday even. Said Dad wouldn't be discharged until they can determine exactly which antibiotic will kill this bacteria. Right now he's on a "big gun" antibiotic, that kills everything. Then it also depends upon the form this antibiotic comes in, only IV or oral. So, it looks like Mom and Dad will be here through the weekend.

Just can't catch a break!

So here we are again, unexpectedly, getting to know even more of the staff at the UMMC here in Baltimore. I received a call from Mom this morning shortly after 4am to tell me that she and Dad were in the ER down here. Dad had awoken around 1 a.m. in excruciating pain. He tried sipping coca cola. He tried some milk of magnesia. He tried walking it off. Nothing worked. Finally, he told Mom he had to get here. Mom called all the doc numbers in "the binder" to get advice on what to do. Dr. Jiang, Med Oncologist, answered her cell in the middle of the night, and told Mom to get him to the ER asap. So, there they are, 3 a.m. at the hotel, calling a taxi to get to the ER. Taxi never came. The folks at the Tremont also tried to flag one down, but also to no avail. Finally, a Tremont bell hop used his own car to transport my parents to the hospital. God, thank you for that angel! I know what you're thinking, "Why didn't they call 911?" Umm....hmmm....yeah......not sure. Evidently calling 911 was "too much trouble," but getting into a strange car with someone they don't know was a good idea. I'll say it again, raising parents is not easy!

I arrived around 6:15 a.m. By that time, Dad had two IVs going with saline, one in each arm, and had already completed a bag of IV antibiotics. He was, and still is, in excruciating pain..... told me this is the worst pain he's ever experienced in his life. His pain level has consistently been a TEN, which means for the average person, it's really a 20+. He's been asking for more morphine, and often. Typically, he has never been a person to request painkillers or come close to seeking out medical attention. The Snead's are a "suck it up, tough it out, and move on" group of people. Apparently, now, though, we're letting strangers take us to the hospital to GET meds! My how far we've come!

CT scan showed that his gall bladder was inflamed, and filled with bacterial fluid.....again, and it had  perforated. Explains the pain. The good thing is, his vitals have been perfect. His labs didn't indicate a high white cell count, so the infection hasn't gotten too far. No nausea, or fever, or vomiting. Just this blasted pain! This gall bladder has been nothing but trouble.....Dad wanted it out and the surgical team said that was their plan. Welllll......that was the initial plan....to remove the gall bladder. But when Dr. Alexander arrived, the surgery brakes were put on, and then Plan B.

Oh so, THERE'S a funny story.

Soooo....... keeping in mind that we are in a teaching hospital.....and if you are a Grey's Anatomy  fan, you know exactly what that might look like. The McDreamy's and the McSteamy's are plentiful, indeed; I'm sure there are things going on in the on-call rooms I'd rather not know about; and the surgical residents DO definitely tend to be a little "vulturous." Not sure if that's a word, but....sounds good. Anyway, I can attest that the stereotypes witnessed on that show could very well be true. They are "savages for surgeries!" (Sounds like a t-shirt slogan.) When the surgery team...and I mean team, like enough to be a football team...came rolling through the ER to see Dad, the interns were all atwitter with excitement, their eyes bulging and glazed over, and their chatter focused on, "Did you hear about the gall bladder? The perforated infected gall bladder?" The excitement on their faces that this infected, perforated gall bladder on this pancreatic cancer patient might need to be surgically removed gave them all a bit of a crazed look.....like they'd been up all night, which.....I guess is possible too. They couldn't do enough to try to squeeze around the bed to take a peek at this potential surgical candidate that in a few months would also offer up a whipple to one of them. Would it appear insensitive if I tried raffling that opportunity off?

So Plan B did not entail surgery at all. The surgery students' dreams were completely deflated, and the "team" dwindled down to only 3 after that. Dad suddenly became a teachable moment. How awesome it was to see Dr. Alexander with this football team of young surgeons huddled around a monitor examining Dad's CT scan, all the while teaching to these students the reasons surgery was not a good option for this case.  Doing surgery now would really break up the treatment plan right now. It would also delay the whipple. Neither of which we want! So, they did a (let me see if I can spell this expensive word) percutaneous cholecystostomy.....they put a drain in his gall bladder to get the pus out and continuously drain any bile out of the gall bladder. This drain will be in for weeks. I'm good with that. It's not the most glamorous of apparati tohave to sport under your clothes, but this infection stuff is frustrating.
Step back 14 hours prior to this latest attack of pain.....

Dad was a ROCK STAR yesterday. He'd been eating well. His treatment schedule was becoming an easily navigated daily task for him by this time, and he had walked by himself from treatment back to the hotel yesterday! That's 8 blocks! Who would've thought we'd be where are today, looking at this situation once again. Deja vu.... we all found ourselves on such a high, only to be faced with yet another challenge. I know the Lord doesn't give us more than we can handle, but sheesh! Can we catch a break?

It's now after 6pm. The procedure is over and Dad and I are back in the ER bay waiting for a room for him. He's getting morphine every 3 hours. He's rocking out to classic country on Pandora radio (love my Galaxy SIII!).  Seems to be resting more comfortably now. Dinner for him has consisted of ice chips and honey lemon hall's cough drops. He's got a tube down his nose into his stomach to continue to drain bile juices out of his tummy too. Mom was exhausted. She needed a big break. I sent her back to the Tremont to de-stress and sleep.  Hopefully, she will.

I know there are prayer warriors out there reading this blog....please continue. Pray for renewed physical and emotional strength. For both of my parents. This infection came out of no where....

Much love to all. We appreciate all that everyone has done for us! I hope God is ready, b/c he's got a LOT to listen to tonight!