Friday, November 30, 2012

Back to the Hospital

E.'s cousin came to visit last night and I shared with her the events of the previous 24 hours.  She chatted with E. and could easily see how he was suffering in pain.  She and I agreed that he needed to go to the Emergency Room for some relief.  After tag-teaming him with our line of reasoning, he finally conceded.  We loaded him up and were on our way before he could change his mind.

The Emergency Room was not exactly what we expected on a Thursday night, but supposedly the computers were down which made everything go in slow motion.  We arrived about 8:00 p.m.  After doing an x-ray on E.'s abdomen, they discovered that he was backed up, not only with fecal matter, but also with barium (barium from his Upper GI from 11 days ago!).  That barium had essentially turned to concrete up there and was causing a few problems.  Ya think?  A large (and disgusting) enema was supposed to do the trick.  But it didn't.  It actually did nothing.  At all.  Except cause him A LOT of pain.  So, they decided to admit him.  At 5:00 a.m.  Yes, after we had been there for nine hours.  Sigh.

He got settled in a regular room on the Oncology floor.  But then they couldn't really do anything for him because he was scheduled for a PET/CT at 11:00.  Everything had to wait until after that test was completed.  (Side note:  As part of the PET/CT, he had to drink more barium.  I kid you not.)  Because the PET/CT was scheduled previously on an outpatient basis, it was scheduled in the office building across the street from the hospital.  That meant that E. had to be transported and I assumed we would just put him in a wheelchair and wheel him across the street.  Instead, the transport company put him in a wheelchair, took him through the Emergency Room, out the ambulance bay and into a van.  We then DROVE across the street (literally, across a residential street), unloaded him, went into the building and got him to his PET/CT.  We repeated the process on the way back.  I'm sure that just cost us a pretty penny.  On a good note, E. handled the scan like a trooper.

Once back in the room, they gave E. a shot in the belly to help get some things moving in there.  I forget what the shot is called.  They're also having him drink some "Magnesium Citrate," which supposedly also helps things along.  E. has been very cranky, and has gotten quite pissy with several of the nurses and doctors.  I know he's frustrated and that frustration is coming out.  He's also got a bit of confusion and disorientation, which only adds to that frustration.  Add intense pain to the mix, and it's just a ball of fun.

They did another x-ray of his abdomen to monitor the progress of sh*t in there.  Literally.  Haha.  He seems to think he's getting out of the hospital tomorrow, but I don't think that will be the case at all.  We haven't seen any of E.'s regular doctors.  I called his oncologist, who was out of the office.  I called his radiation oncologist, who was out of the office.  I called his gastroenterologist, who was out of the office.  I called his primary care provider, who was out of the office.  I guess this was THE Friday to take off.  Now that we're heading into the weekend, my guess is that we're here until at least Monday.  Hoping for some pain relief for him and some sleep for the both of us.

Thursday, November 29, 2012

Ultrasound

Last night was a long one.  There was little sleep for either of us.  E. had some severe pain and constipation issues.  I wound up calling the Home Health Nurse, who came over at about 9:30 or 10:00 p.m. to help.  Unfortunately, there wasn't a solution to be had and E. refused to go to the Emergency Room.  Up and down, up and down, all night long.

By morning, things were a tad better, but not much.  E. did manage to get his ultrasound done, but by the time he got home, he was throwing up.  There just didn't seem to be an end in sight to the pain.  The family doctor called and explained that while the ultrasound showed some fluid retention in his abdomen, there wasn't the massive amount she expected to see.  She was going to fax the report to his GI doctor to see how they wanted to handle the situation and if they wanted to drain the fluid.

I'm hoping for a good night sleep for everyone tonight.

Wednesday, November 28, 2012

No Go on the Ultrasound

The Home Health Nurse came this morning and was able to draw labs straight from the picc line.  It was nice not having to go to the Lab.  The picc line will have to be flushed, but we're not quite sure if that will be weekly or daily.  E.'s vitals were all stable, although his oxygen saturation level is still running low and his pulse is still running high.

The ultrasound was a bust.  E. was simply in too much pain to go anywhere.  He could barely make it from the bed to the bathroom.  There was no way he was going to make it to the car.  I called the Radiology Department and was able to reschedule for tomorrow.  So, we'll try again tomorrow and hope Take #2 is successful.

The doctor's office called this afternoon with the results of his labs already.  E.'s potassium level was low at 3.3 so they're calling in a prescription for potassium.  If I recall correctly, the potassium comes in a powder that needs to be mixed in water and E. really hates it (I think he's had it at least once or twice before).

The liver numbers are still improving, so that's good.

1)  Bilirubin, Total:  2.7 (normal 0.0-1.1)
2)  Alkaline Phosphatase:  214 (normal 25-150)
3)  AST:  68 (normal 0-40)
4)  ALT:  34 (normal 0-44)

To compare to past results:

Bilirubin on 11/20/12:  3.8;  11/14/12:  5.8;  10/29/12:  8.4
Alkaline Phosphatase on 11/20/12:  212;  11/14/12:  484;  10/29/12:  390
AST on 11/20/12:  71;  11/14/12:  132;  10/29/12:  173
ALT on 11/20/12:  49;  11/14/12:  107;  10/29/12:  128

Tuesday, November 27, 2012

Picc Line

E. was agreeable to trying a pain patch, so we placed the first one on him last night.  It's the lowest dose right now.  He wears it for three days and then he gets a new one.  The idea is that it takes the edge off the pain and keeps him a little more comfortable.  He can still take his other pain meds for any "break through" pain.  If this level of pain meds is not adequate, they can increase the dosage of both the pain patch and the other meds as well.  I'm not sure if the pain is getting more intense or if E. is getting sick of everyone nagging him, but he seems more open to pain relief these days.  I'm not sure why, but nausea has hit hard the last couple of days.  He's gotten sick both yesterday and today.  Since he hasn't been eating, that means he's throwing up bile.  And since the last throwing up episode wound up in a bloody mess, I stand over his shoulder and watch him like a hawk.  Thankfully, there's been no blood.

E.'s very unstable on his feet these days and moving anywhere is slow and tedious.  I have to remember to plan double the time I think we need.  We managed to get from the house to the car with his walker, but it used up every ounce of energy he had.  By the time we got to the hospital, we had to resort to a wheelchair.  Other than the 45 minute delay at Radiology, the procedure to get the picc line only took a few minutes and we were headed home again.  With E.'s veins as weak as they are, I think the picc line will save him a lot of pain and agony.  It will be nice not to have to watch people stick him over and over again or dig around trying to get a good stick.

E. seems a little confused from time to time.  It may be the medication, or the dehydration, or the pain meds, or the cancer, or the lack of nutrition, or any combination of the above.  Sometimes I have no idea what he is talking about.  Sometimes when I figure it out, I have to laugh because it has nothing to do with what is going on right now.  But sometimes he's got it all together and I'm the one that doesn't have a clue.  What a pair we are.

So tonight, I have him all tucked in to his hospital bed, right next to the "big bed."  I have the rails up on the sides so he can't make any crazy escapes in the night.  Hoping for a good night's sleep for all of us.


Monday, November 26, 2012

Doctor Visit

We got in to see the doctor first thing this morning.  I just love our family doctor.

She quickly assessed the situation and immediately wrote her "to do" list.

* get a picc line inserted over at Radiology
* set up IV hydration
* order labs
* fill out a form for a handicap placard for DMV
* order abdominal ultrasound to check for fluid retention
* get a hospital bed and wheelchair delivered
* monitor diabetes - check blood glucose numbers in a week and re-evaluate
* prescribe pain patches
* switch medications to liquid or IV form if available
* communicate with home health about ongoing care

By the end of the day, she had most of her list done.  E's scheduled to get his picc line inserted tomorrow.  We had to run by the lab to get his protime, as it was a prerequisite for tomorrow's procedure, but future labs can just be drawn from his picc line.  The abdominal ultrasound is scheduled for Thursday.  The hospital bed and wheelchair are being delivered tomorrow.  Pain patches and liquid meds have been called in to the pharmacy.  The DMV form has been filled out and now awaits me actually taking it to that dreaded place.  Even the infusion clinic has already called to collect basic information to set up E.'s account for his hydration supplies.  I talked to her about my concern regarding his oxygen saturation levels as they have been running between 90 and 93 (once as low as 88).  She explained that she wanted to check for potential causes before just giving him oxygen as she'd much rather treat the problem than just provide a bandaid.  If there is a bunch of fluid in his abdomen, it could be pushing on organs including his diaphragm, making it difficult for him to getting adequate oxygen exchange.  If fluid retention is not the issue, E. may need some supplemental oxygen at that point.

I went ahead and cancelled the visit from the home health nurse today since we'd already seen the doctor.  E.'s vitals were stable and I think that's all home health would be checking today.

Sunday, November 25, 2012

Made it Through the Weekend

It's Sunday evening and we're still at home.  That's a very good thing.

The physical therapist came by today to do her evaluation, but E. was in too much pain to even get out of bed.  She did give me some tips and pointers.  She also showed me some things I could do with him when he's feeling a little more comfortable to help with his back and hip pain.  She'll be back  to try again on Saturday.

I wish I could say that E.'s feeling better and things are on the upswing, but that's not the case at all.    I have a list of things we need to discuss with the doctor, so we'll be calling first thing in the morning to make an appointment.

Seeing someone you love in this much pain is agonizing.  I wish I could make it all better.

Friday, November 23, 2012

Home Health Nurse

A Home Health Nurse visited today.  She spent a lot of time going over E.'s history, his medications, his discharge instructions and the services they would be providing.  E. slept on and off throughout her visit and wasn't thrilled with having to answer the same questions for yet another person.  He is frustrated because he feels like there are too many people involved in his case.  (He'll really be thrilled after the Certified Nursing Assistant, the Physical Therapist, and the Occupational Therapist all visit next week too.  Oh, and throw in the  Palliative Care folks too.)

I expressed some concern about his diabetes medications.  His oral diabetes medications were discontinued because of his poor liver function, so he is strictly on insulin currently.  With how little he is eating, I was unsure of how much short and long-acting insulin to give him.  The Home Health Nurse called the Primary Care Doctor to get some clarification, so now I have guidance there.

There's also a general concern about dehydration.  E. is simply not drinking enough liquids to stay hydrated.  She recommended 16 to 24 ounces of liquids per day at a minimum and we're lucky if E. has 8.  The nurse and I both agreed that IV hydration would be beneficial and we discussed the apparent need for a picc line since E.'s veins are so horrible and don't maintain peripheral IV's very well at all.  Since it's the long weekend though, we won't be able to get a doctor's order for a picc line until Monday.  The nurse wasn't sure he'd make it through the weekend without some IV hydration, which would mean a trip to the Emergency Room and undoubtedly another admission to the hospital.  Groan.  (After the nurse left, she spoke to her supervisor and found out that she could start a peripheral IV and slowly run a bag of IV hydration overnight.  I suggested this to E. and explained our reasoning behind it, but he grumpily opposed it in very colorful language.  So, we cross our fingers and hope he drinks enough to stay hydrated enough to stay out of the dang hospital.)

There appears to be some fluid collecting in E.'s abdomen.  It is big and hard.  The nurse measured it and will continue to monitor it.  It may possibly need to be drained.

E.'s blood pressure continues to be good.  His oxygen saturation rate was 93, which concerned me, but the nurse said it was okay.  When it was that level at the hospital, they put him on a couple liters of oxygen.

Getting in and out of our bed (we have a big tall log bed) is proving to be too difficult.  E. slept in Grandpa's bed in the guest room last night as it is easier for him to get in and out of, although he still needs assistance.  (It was worse than having a newborn baby at home last night, as I was trying to listen for every sound.)  I think it is time to bring in a hospital bed and align it next to our bed.  That way, he can be comfortable and I can still be next to him.  I think having the hospital bed with the ability to raise the head will help too.  It will make it more comfortable for him and make it easier for him to get out of bed.  The hardest thing for him is to get into the sitting position when he's been laying down.  When I suggested it might be time for a hospital bed, E. said, "probably."  I always know I am on the right track when I don't hear cuss words or a big argument from him.

So, we continue to try to push the fluids and keep him out of pain.


Thursday, November 22, 2012

Thanksgiving

I wish I could say that E. was able to enjoy a big Thanksgiving feast of turkey and all the fixings, but that was not the case.  He had a few bites of a quesadilla for breakfast, a couple of sips of an Ensure for lunch and that was about it.  He watched a bit of the parade and opened his eyes for football now and again.  In spite of all that, he was glad to be home.

Even before E. went into the hospital, I had a feeling that cooking a big Thanksgiving meal might not work out so well and wound up ordering pre-made turkey and ham meals (along with all the sides) from Raley's.  (Those of you that know E. and know how much he likes to cook, can imagine how this didn't sit well with him.)  A big shout out to Morgan for heating everything up and making Thanksgiving dinner happen ... it actually was all super yummy!


And just to share a funny conversation I had with Peanut when he crawled into bed with E. and I this morning:

Me:  "Peanut, today is Thanksgiving and we have lots of things to be thankful for.  What are you thankful for?"

Peanut:  "Corn."

Me:  "Corn???"  What?  Like popcorn?  Or regular corn?"

Peanut:  "Just regular corn."

Me:  "That's nice.  Anything else?

Peanut:  "No.  Just corn."

Me:  "Well, I'm thankful for you.  And I'm thankful that daddy is home from the hospital.  How about you."

Peanut:  "I'm thankful for corn.  I really like corn."

So there you have it.  We all have to be thankful for something.  And Peanut is thankful for corn.  (Shut it Amy and your "Secret Love of Corn Society."  There is something wrong with you people.  Haha.)





Wednesday, November 21, 2012

Home


By the time I got to the hospital this morning, I once again missed the GI doctor.  According to E., the GI doctor signed off on his discharge and we then just needed the Internal Medicine doctor to sign off as well.  We waited and waited and waited.  E. was getting grumpier with each click of the clock.  She finally made her rounds in the late afternoon and agreed to discharge E. with Home Health in place.  She ordered a nurse, a certified nursing assistant, physical therapy and occupational therapy.  E. didn’t think any of it was necessary, but I was especially glad to hear about the nursing care.  If nothing else, a nurse can offer IV hydration, which I think will be a huge help.  E. seems to think he can drink enough by mouth, but I don’t agree.  The nurse can also collect labs.  Considering E. went through four IV’s in his short hospital stay, we discussed the possible need for a picc line or a port.  We’ll have to discuss this further with his primary care doctor.  The funniest thing to me was when E. argued against physical therapy, stating that he would instead just go to the gym and work out.  Now, those of you that have seen him in the last few weeks, know that that there is no way he is going to be going to the gym any time soon, even for a visit, let alone to work out.  When the doctor suggested that the CNA could help him with showers, E.’s facial expression said it all.  She caught on quickly and revised her initial statement by saying that the CNA could offer his wife suggestions of how she could help him with showers and other daily tasks.  Haha.  

It took awhile to get IV’s disconnected, discharge papers filled out, prescriptions written and a wheelchair delivered.  We were finally out the door and still had to stop at the pharmacy.  The first order of business at home was a nice, long, hot shower.  Toothbrush, toothpaste, lotion, deodorant, lotion, pajamas and back in bed by 8:00 p.m.  Ahhhh, home sweet home.

So thankful.

Tuesday, November 20, 2012

Regular Room

When I got to the hospital this morning, E. was sitting up in a chair, trying to eat some "cream of crap."  He had some great color and just seemed to be doing better overall.  Even his voice seemed stronger.  We had several longer conversations, rather than the short choppy question and answer sessions that he has typically been having.  When it was time to take a walk, E. pushed the wheelchair around the nurses' station twice.  He was more stable on his feet that he has been in weeks.  It was a huge improvement.  I think he tuckered himself out though, because he didn't last much longer in the chair before he was back in bed and dozing on and off again.  His voice was back to being weak and raspy, and conversation was minimal again.

I missed the GI doctor, but E. claimed that the GI doctor said everything looked good on the Upper GI.  God bless the man, but he doesn't always get the information right, so I was hoping to track down the GI doctor myself.  I never did find the GI doctor, but the Internal Medicine doctor came in and confirmed that all looked good on the Upper GI.  There didn't appear to be any obstructions.  E. was given clearance to begin a regular diet and try to eat whatever he wanted to try.  She was concerned that he hasn't been nor is he eating enough.  She thought that E. might get to go home tomorrow, but the GI had thought maybe the next day so I'm not sure who will win out.  They served chicken, rice, vegetables and a roll for lunch.  E. ate about 6 or 7 bites of chicken and probably half of the roll.  It was very difficult though and he had a tough time getting it down.  Afterwards, he was nauseous and had to take some anti-nausea medication.

There was some confusion if E. could move to a regular room or not.  Because of that IV medication that E. is on that helps stop/prevent internal bleeding, hospital policy sometimes dictates that patients need to remain in ICU to be monitored (policy seems to change monthly).  It was finally confirmed that E. could be moved to a regular room, but his heart would need to be monitored via a telemetry unit.  Turns out, he was going to a room on the fourth floor and not the oncology unit after all.  We had to wait several hours for a bed to finally open up.  As they wheeled him down the hall to his new room, we passed numerous empty rooms and vacant beds on both sides of the hall.  I'm not sure what exactly the hold up was, or if they just wanted to make sure E. had an extra special room.  Because boy was Room #405 "special."

Room #405 was a tiny room.  A tiny room with two beds.  A tiny room with two beds and no chairs.  A tiny room with two beds and no chairs and a roommate.  A tiny room with two beds and no chairs and a roommate with dementia.  I found two chairs to drag in and wedge between the foot of the bed and the bathroom for E.'s dad and myself, but had to move them every time dementia roommate had to use the restroom (like every 10 minutes) or whenever a nurse came in.  Dementia roommate kept getting in and out of bed and wandering around the room, striking up conversation.  He kept telling me how he worked there, while his hospital gown kept flapping in the breeze (yes, I got flashed repeatedly).  He'd been on this job for 18 days and finally got the light in this place working.  He wanted to search through E.'s bags because he couldn't find his tools.  He kept asking me for his next job and for the schedule.  I didn't know what to do, so I played along and I asked him if he ordered all the parts already.  We had quite the conversation about the jobs that were lined up to do.  He wasn't happy with the schedule I had worked out though because he had to get to L.A. for his next job.  The entertainment value wore out after about 20 minutes.  E. slept through it all.  Or pretended to sleep through it all.  Grandpa didn't have his hearing aids in so missed most of the fun.  Eventually, I could take it no more and strolled down to the nurses' station.  After chatting with a few people, E. was transferred to a private room down the hall.

E.'s been having some trouble with his IV's.  His right arm is completely shot.  He's got so much scar tissue there (from chemo, past infiltrated lines, cellulitis, blood clots, etc.), that no blood can even be drawn from that arm.  He's now on his third IV on his left arm and it just went bad tonight too, so they're going to have to start yet another one.  He cringes every time the lab shows up to draw blood and I immediately go on the defensive.  Oh, the advantages of having a picc line or a port.

Dinner looked tasty, but one bite told E. otherwise.  It had bell peppers in it and those of you who know E., know how much he despises bell peppers.  E. requested a peanut butter and jelly sandwich instead, but one couldn't be found.  The nurse did find a turkey sandwich instead, so E. got a bit of that down.  Hopefully he'll get a decent night's sleep.  We're both crossing our fingers that he'll be discharged tomorrow, or the next day at the latest so he can be home for Thanksgiving.

(P.S.  Today's bilirubin level was back at a 3.8.)

Monday, November 19, 2012

Grumpy

A different GI doctor made rounds this morning.  He said he reviewed the procedure and case notes of his partner, as well as E.'s labs.  It looked to him like the bleeding was under control since E. hadn't vomited any more blood and the labs (specifically, his H & H) were looking good.  He said that it wasn't clear if the bleeding was coming from the esophageal varice or from the mass.  He actually said that it would be better if the bleeding was from the varice rather than from the mass as it would be less likely to bleed again.  If the bleeding was coming from the mass, it could start bleeding again at any time without warning.  (Yet after reading a bit on the internet, it sounds as if once you have a bleeding esophageal varice, you are prone to more bleeding esophageal varices.)  Either way, bleeding varices and masses don't sound good.

They gave E. some a medication to stimulate his appetite today called Megace.  He managed to eat a small container of pudding before they informed him that he was scheduled for an Upper GI at 7:00 tonight (now postponed to 8:30 or 9:00 pm) and was allowed nothing more to eat or drink.  So much for that!  They increased the IV fluids as they are concerned about the low output.  Despite the high volume of hydration they've already pumped into E., he's only peed a very minimal amount.  I'm hoping this is only due to the fact that he was so dehydrated and once he gets caught up, input and output will be more proportional to each other.

The Internal Medicine doctor is concerned that there might be an obstruction affecting his eating, which is why she ordered the Upper GI.  The concern is that the mass in the small intestines (at the base of the stomach) has possibly grown larger, thereby blocking food from going any further.  So, for today's Upper GI, E. will drink some Barium (a thick, chalky white substance) and then they'll take a series of x-rays as they watch it move through his system.

E. dozed on and off throughout the day.  He grimaced in pain frequently, but will no longer even tell me what his pain level is on the pain scale because he is sick of me suggesting pain medication.  He's taken none today.  He's watching a little Monday Night Football, excited to see local UNR boy Colin Kaepernick as the starting quarterback.  His bilirubin went UP from 3.8 yesterday to 3.9 today. Not up a lot, but still the wrong direction.  It sounds like he may get to move to a regular room on the oncology floor tomorrow.  He's very sick of being in the hospital and getting quite grumpy about it.  Grumpy is good.  It means he's still full of piss and vinegar.  We can work with that.

Sunday, November 18, 2012

Stable

E. is stable.  He is doing well.  He's had visitors trickle in and out all day long.  They witnessed various moods and expressions throughout the day ... a little bit of loopiness, some grimaces of pain, a bit of orneriness thrown in for good measure, a dash of normalcy and a whole lot of sleepiness.

The GI doctor came in and did the scope first thing this morning.  They actually brought the procedure to E. rather than bringing E. to the procedure.  They wheeled a big cart with all the equipment right into E.'s room in the ICU and did the endoscopy right there.  Pretty impressive.  I waited in the waiting room, but returned after about 45 minutes.  The doctor explained that he found one bleeding esophageal varice (you might recall that E. was found to have esophageal varices in the endoscopy done on November 1st).  An esophageal varice is an abnormal, enlarged vein (like a varicose vein in the esophagus) that most often occurs in people with serious liver diseases.  They develop when the normal blood flow from the liver is slowed.  The blood then backs up into nearby smaller blood vessels (like those in the esophagus) causing them to swell.  Here's the kicker:  sometimes those esophageal varices can rupture causing LIFE-THREATENING bleeding.  Glad I didn't know that yesterday.  Anyways,  the GI doctor used an elastic band (like a rubber band he said) to tie off the bleeding vein.  Basically the vein gets "strangled" so it can no longer bleed.

The GI doctor said that the stomach and the entire digestive tract was inflamed, swollen and irritated.  There were possibly other areas where bleeding was occurring as well, but he thinks that the esophageal varice was the main one.  E.'s on a host of different medications, including a medication that slows the flow of blood from the organs to the portal vein, which reduces the pressure in the vein.  All this will hopefully stop any internal bleeding that might still be occurring.

While the doctor was in there checking things out, he checked on the stents.  The bile duct stent was still in place and doing the job it was supposed to.  The stent in the pancreas (the one that was put there as a detour and we were hoping would slide out on its own) was still there as well, so the doctor went ahead and removed it.  E. tolerated the procedure well, but was out of it for quite awhile afterward.

E.'s still resistant to take any pain medication, despite cajoling from others.  He often grimaces in pain, but claims "it's not THAT bad."  The nausea seems under control, yet he still has no appetite.  Today, he took a total of two bites of pudding and one sip of soup.  They are going to try to start him on a medication to stimulate his appetite to see if that might do any good.  The nurse thought she might suggest a discharge for tomorrow or the next day, but when I ran into the doctor, she thought she might move him to a regular room tomorrow or the next day.  Either way, he is clearly improving so that is good.

Oh, and on another good note, his bilirubin level today was 3.8!

ICU

E. hasn't been feeling great.  That's probably a pretty big understatement.  The pain level is creeping up.  The nausea is creeping up.  The general misery is creeping up.  He's not eating.  He's not drinking.  He's not doing much.  After jumping through a bunch of hoops, I was able to make him an appointment with palliative care for Wednesday, because whatever they've got up their sleeve, it's got to be better than this.

He spent all Friday throwing up.  He kept nothing down.  We tried some toast.  Up it came.  We tried some Ensure.  Up it came.  I gave him some Zofran (anti-nausea meds) and waited.  Then we tried some Ensure again.  Up it came.  Nothing, and I mean nothing, stayed down.  It looked like brown bile, so we both thought maybe it was a good thing.  Maybe some of that bile was coming up and out.  Maybe it would bring that bilirubin number down.

Saturday, it seemed like he was feeling better.  Then he began throwing up again. As I went to pour out the puke bucket, I noticed the color wasn't brown, but dark red.  And it was filled with clots.  Like lots of little chicken livers.  I looked closer.  Yup, blood.  I quietly said to E., "I think we might need to head to the hospital because you're throwing up blood," and the man who usually fights and argues about anything medically related began to look for his shoes without another word.  (In hindsight, I'm now wondering if he wasn't throwing up blood yesterday as well.)

By the time we reached the Emergency Room, his pain level was topping an 8.  I got him into a wheelchair and they were able to triage him immediately and get us straight back into a room.  Unfortunately, they could give him nothing until he was seen by a doctor and that took a while longer.  Eventually they ran some labs on him (his bilirubin is STILL a 5.8! but he's not anemic yet which means he hasn't lost too much blood).  He began throwing up in the E.R. and the color was then a brighter red, whatever than meant.  They were able to give him some IV Zofran which helped settle things down quickly and the IV Dilaudid brought his pain down to a 5.  Just so happens that a great Internal Medicine Doctor was on-call, which pleased the E.R. doc greatly.  She chatted with us at great length and made the decision to admit E. ... to ICU.

So, E.'s in ICU (the one on the 5th floor instead of the one on the 1st floor, which is waaaaay nicer)  This is definitely a step-up from the ICU post-brain surgery.  They've got him hooked up to a variety of meds ... some to try to stop the bleeding, some anti-biotics, some of his regular meds now delivered via IV, some hydration, etc.  He's getting the nausea meds, which are helping.  They've also switched him to Morphine for pain.  His pain is still at a 4, with break-through pain of a 6 here and there.  The Morphine is lowering his blood pressure and making his breathing really shallow though, so they've had to put him on oxygen.  The plan is to do a scope on him in the morning to try to see where this blood is coming from and go from there.  When I asked about an anticipated length of stay, I was told, "Let's plan on 3 or 4 days right now and go from there."  E. says, "3 or 4 days my a$$."

Wednesday, November 14, 2012

Lab Results

Well, sh*t.   Lab results aren't normal.

1)  Bilirubin, Total:  5.8  (normal 0.0-1.1)
2)  Alkaline Phosphatase:  484  (normal 25-150)
3)  AST:  132  (normal 0-40)
4:  ALT:  107  (normal 0-44)



To compare to the 10/29/12 lab results:

1)  Bilirubin, Total:  8.4
2)  Alkaline Phosphatase:  390
3)  AST:  173
4)  ALT:  128

So, there is some improvement.  Except for the Alkaline Phosphatase.  I'm not sure what that's about.

Tuesday, November 13, 2012

Labs

Who knew it would be so tough to get some dang labs?

To recap,  a mass blocked E.'s bile duct, so his liver backed up with bile.  On Thursday, they placed a stent in the duct so hopefully all that bile could drain.  He needs some normal lab numbers so we can travel to MD Anderson in Texas to hopefully figure out some options to deal with this latest cancer recurrence.  (He can't get any treatment with his liver numbers so out of whack.  With the bile so high in his body, it's very toxic.  Add poisonous chemo to the mix and it could be deadly.)

In my search for information online, it looks like it can take anywhere from days to weeks for the bile to drain.  An added complication though is sometimes after a few weeks, the tumor begins to grow over the stent, causing another obstruction and so you're back to where you started.  I also read about situations where the stent was unsuccessful for a variety of reasons.  It seems reasonable to me that we need some labs to see where we are at.  1.  If the stent is working and his numbers are down, we can make arrangements to get our butts to Texas.  2.  If the stent isn't working and his numbers aren't decreasing, we need to come up with Plan B.

So, on Friday, I left message #1 with the GI nurse explaining how we were trying to get to the Cancer Hospital in Texas because we had no options here.  In order to do that, we needed some normal labs.  Because I figured the office would be closed on Monday, I was hoping we could get a lab slip before the weekend to hopefully collect labs on Monday.

On Monday, I discovered the GI office was indeed open.  I left message #2.  I again explained the situation.  At 3:30 p.m., the nurse returned my call.  Once again, I expressed how important these labs were to our situation.  She indicated that she would discuss it with the doctor and call me back shortly.

What's the definition of "shortly" anyways?

This morning (it's Tuesday now, in case you lost track) I headed to our Primary Care Physician.  I was in and out in five minutes.  I left with a lab slip in hand.  Thank you Dr. H.!

4:15 p.m. rolled around and the GI nurse called back.  (That'd be 4:15 on Tuesday, not 4:15 on Monday.)  Anyways, she informed me that when we left the office last week, we were given a lab slip that had a date for his next labs.  NOT.  I quickly thumbed through my folder of paperwork and I definitely did NOT have a lab slip.  Anyways, they'd like E. to go in for labs on 11/29/12!  That's 16 days from now!!!  And a full 21 days from his stent placement!!!  Clearly we are not on the same page here.  Did the nurse not hear anything I said in my messages or my discussion with her?  Our follow-up appointment with the GI that was scheduled for this Thursday was re-scheduled for December 4th!  And the purpose of the appointment according to the nurse?  To discuss further stent placement.  Oh dear.  Get us to Texas.

Crossing my fingers for some good lab results tomorrow.


Friday, November 9, 2012

Drop Bilirubin Drop

We just heard from the physician's assistant at MD Anderson.  E.'s labwork (specifically all those liver numbers) have to get back into the normal range for us to make appointments.  Drain bile drain.  Drop bilirubin drop.  And we're headed into a three-day-weekend.  Shucks.

Thursday, November 8, 2012

Procedure

We checked in for E.'s procedure at 8:30 a.m. and they took him to the operating room at 10:15 a.m. They told me to be back in the waiting room within thirty minutes because they anticipated the surgery to take between 30 and 60 minutes.  Imagine my anxiety when the doctor did not emerge until after 12:30 p.m.!  Obviously the surgery took A LOT longer than they thought.

The good news of the day is that they were able to place the stent.  It was extremely difficult.  They actually had to place two stents.  One stent went up into the pancreas and then they worked backwards to get one stent into the bile duct.  The one into the bile duct has anchor, whereas the one into the pancreas does not, so the thought is that it will eventually just slide out (because it doesn't really need to be there).  The stents are plastic, so they are temporary and only good for three months.  After that, they will need to be replaced with another temporary plastic stent or a more permanent metal stent.  (Metal stents are considered for more palliative care and not generally used when treatment options are still being considered, is my understanding.)  The bile is draining, which is great.  The bilirubin level should be going down in the next few days.  His yellow skin and yellow eyes, on the other hand, will take weeks to improve though.

Here's where I get a bit confused.  Remember that mass in the small intestine at the base of the stomach?  In the original endoscopy last week, the verbal preliminary pathology report said it was NOT cancerous.  (We still haven't heard about a final pathology report.)  Now, remember the MRI said there was a group of enlarged lymph nodes that basically clustered together to form a mass or a tumor?  I think maybe these two things are the same.  I'm confused on this issue.  The doctor who performed the procedure today said he was able to get samples from the "celiac axis lymphadenopathy" which were definitely cancerous.  Basically, I'm not sure if we're talking about two separate masses or just one mass (and the original report was just wrong).  This cancerous mass is extending into the pancreas, but no one has made it clear to us if the pancreas is involved.  Until the final pathology report in back, we cannot confirm what kind of cancer this is.  Everyone is assuming that this is spread from his esophageal cancer.  We need to know specifically what kind of cancer it is, because every kind of cancer is treated differently.

The doctor was unable to reach the liver to biopsy the spots (cancer) on the liver.  Again, it is assumed that this is spread from his esophageal cancer.  As he explained to us, if the pathology report comes back from the lymph nodes as esophageal cancer, they may go ahead and accept that the liver is also esophageal cancer mets.  If they want further confirmation, they will need to stick a long needle in E's side by his ribs to reach his liver and pull out tissue to biopsy.  There could be a possibility that this is a different cancer, for example, liver cancer.  Everyone's assumption though is that this is all metastasis from the esophageal cancer.

E. has not yet had a PET/CT scan, but obviously needs one.  We are waiting to hear the plans with MD Anderson.  The insurance company will not pay for two PET/CT scans back-to-back.  We know that MD Anderson will want to run their own scans, so we are holding off getting a scan here.  We are trying to play the insurance game right.

E. is still in significant amounts of pain and sleeping on and off most of the day.  He has finally relented and taken a pain pill now and then.  (He is not on high dose pain medication at this point. He is simply taking Percocet.  The same stuff I took when I had a toothache.)  Eating is still problematic, unfortunately.  I wish there was more I could do for him.

S.

P.S.  A big thanks to MAPper for the delicious dinner and the fixings for tomorrow as well.  It was hugely appreciated after the long day at the hospital.  Big hugs.

Wednesday, November 7, 2012

Procedure Prep

Thanks to some rescheduling at the GI office, E.'s going in for his procedure tomorrow.  That means all the prep work needs to be completed today, so off we went to St. Mary's.  Two and a half hours later, the EKG, the chest x-ray, the labs and all the paperwork were done.

The physician's assistant from MD Anderson phoned and discussed the recent turn of events.  NOTHING can be done treatment wise until the bile is able to drain from the liver.  Right now, the bile's creating a toxic situation in the body.  Adding chemotherapy or anything else to the mix would be deadly.  She asked me to e-mail her after the procedure to let her know if the stent was successfully placed.  I asked if MD Anderson would have a Plan B if the procedure was unsuccessful.  She was not sure, but would discuss it with Dr. A (the oncologist) who was currently out of town, but who would be returning in a couple of days.  She needed to consult with Dr. A before scheduling any appointments.  We are crossing our fingers that the stent will be successfully placed in the bile duct tomorrow and we will be able to get to MD Anderson and see what our options are as soon as possible.

Monday, November 5, 2012

Oncologist Appt

We met with the oncologist this morning.

The first thing we learned was that the biopsy results weren't back yet.  What?  We were told they'd be back on Friday and here it was Monday.  Dr. B gave a call over to the lab and the pathologist gave a preliminary verbal report that she couldn't see any cancerous cells in the samples.  What???  Seriously?  Maybe this was all a bad dream after all.

The words hadn't even sunk in when Dr. B turned the page and his eyes got big.  "Hold up," he said. He was scanning the MRI/MRCP report and it told a different story.

There are "multiple low-density lesions (approximately 5)" in the liver suspicious for metastasis.  The largest mass is in the right lobe near the diaphragm and measures 3 cm.  There is small free fluid adjacent to the liver.

"Bulky celiac axis lymphadenopathy is present."  (My understanding is that this is like enlarged lymph nodes, suspicious for metastasis, clustered together.)  This area measures approximately 5 cm.  The mass extends into the pancreas and obstructs the common bile duct.

"The upper superior mesenteric vein and the portal vein are thrombosed.  This is likely due to compression of invasion by tumor."  As I understand it, these veins are clotted because the mass is pushing on them.  Nice.

Right now the immediate issue is the bile duct.  We need to get a stent in there so the liver can start working.  E. is scheduled for an Endoscopic Ultrasound on Thursday to hopefully get a stent placed to open up that bile duct.  There is concern that they won't be able to get past that mass in the small intestine.  Yikes.  If they are successful, they will also collect biopsies at the same time.  We need to know what exactly we are dealing with.  The assumption again is that this is mets from the esophageal cancer, but it might be another beast altogether.

Little can be offered for E. here in Reno.  The oncologist already explained that the only thing that Reno could offer him would be chemotherapy.  He agreed that MD Anderson might have more options and agreed it would be worthwhile to see what they had to say.  We were scheduled to head to Texas in December for a simple follow-up, but needless to say, things have changed and we are hoping to be Texas bound as soon as possible.

It was suggested that E. be admitted to the hospital for hydration and pain management.  I do believe I saw the middle finger.  E. did manage to eat a protein bar today and drink some water.  He also finally took his first pain pill, after writhing in pain for hours (days, really).  Though he's been sleeping a lot, it looks like he's finally sleeping peacefully.



Friday, November 2, 2012

MRI and MRCP

E. underwent and MRI and MRCP of his abdomen today.  The hardest part was that he wasn't allowed to have anything to eat or drink for six hours prior to the tests and the tests weren't scheduled until 2:30 p.m.!  Not that E. is eating much these days, but he sure was thirsty by the time he was finished.

Again, the test results would be available this afternoon, but since Dr. N wasn't around, we'd have to wait through the weekend.  I went ahead and scheduled an appointment with the oncologist, Dr. B for Monday morning to get the ball rolling.  Hopefully we'll have some information by then and get a plan in place.

Thursday, November 1, 2012

Endoscopy

E. underwent his endoscopy without any complications.  He even came out of anesthesia with ease, which he doesn't always do.  Dr. N was quick to meet me at E.'s bedside with a diagram, which I knew wasn't good news.  He drew me a picture of E.'s stomach and the mass he found in the small intestine, specifically in the "duodenal bulb."  He said based on E.'s history, he'd guess it was mets from the esophageal cancer, but he took biopsies which would be sent out to the lab.  According to the preliminary report, the findings were as follows:

1.  Duodenal bulb lesion with partial obstruction.  Lesion seemed firm and friable.  Biopsies were obtained.  There is concern for invasion of the duodenal wall by metastatic adenocarcinoma.
2.  Duodenitis.
3.  Gastritis.
4.  Esophageal varices.

The biopsies should be back tomorrow, but Dr. N would be out of the office, so we won't know anything until Monday.  Grrr.