Good morning Carol fans! Knew you’d be interested in “Carol’s capers” these last few days! She is resting comfortably at Hopkins, awaiting a re-do of the nerve block she had May 1st. That will happen tomorrow. I have cut and pasted her emails together to recap how she got there. So what you read below is from Carol’s Blackberry to my computer! Keep the blog notes coming. Carol loves to hear from all of you!!
Sally


From Carol:

Long story, but big unexplained lower back pain caused me to call in
to the Stent Doctor Thursday (b/c it was the last procedure I had had so asked them about
the pain). They said, most probably not the stent insertion--it had been 6 days.
On-call doc suggested -"go to ER, get a blood panel so they can get a good look.
So, upon good advice, we didn't go to the local ER (where they don't know my
history) Frank brought me back to JH Emergency Room on Thursday evening.
It was VERY good b/c they are cross-referencing records, etc.

So trip here was not an emergency, that was good -- just a "let's get to the
why this acute pain" is coming more and more frequently – mid-day and middle of
the night. And the "walk it off, it is just gas" theory didn't seem to be
working.

All tests so far showing all labs are very good:
Tests so far:
Blood panels (all good, liver, billirubin in normal range, etc)
Flat panel X ray
Sonogram of kidney (just showed lots of Gas)
Dry CT Scan of liver
Regular CT (which is great resource for Dr Laheru, oncologist b/c he can compare
cell growth with history CT results.)
Dr Sam Giday (GI) said last night he wants to watch colon for any swelling. But
doesn't see any signs of concern.

Lots of theories at this point:
Kidney stones (probably not)
Pancreatitus (I am on IV liquid only, resting pancreas. May go back on fluids
today)
Nerve block has worn off (I go in Monday for a re-do on that. That's good!) I
would say they are zeroing on this one.


Okay, so here’s another amazing God Is In the Details moment:

This is a great story: (skip to ending: Nerve Block will be done on Monday) The
Pain Management Post-Doc Resident just came by. (He looks JUST like Chip! 30 yrs
old. Blonde, blue eyes, same build. Is an Army Doctor working at JH in a Pain
Mgmnt residency-just graduated last week and is re-locating to San Antonio next
Tuesday - the day after my procedure. His name is Brandon.

He was all excited b/c he was telling me that JH just set up a new system and
MONDAY is the very first day! :). Apparently in the past the Pain Mgmt unit
would schedule procedures all on Outpatient (yes, like my last one) but if a JH
In-patient needed a procedure they would try to squeeze them in to an already over
full schedule and it caused stress, frustration and irked Med Staff who had to
be reacting with no advanced planning.

Starting Monday (coincidence?) They have their first "okay, we have a scheduled
opening, Go out and find us an In-Patient to take this Spot!!) ME! --- I can't
tell you how excited he was to have affirmation for the "new system"!

ALSO: I mentioned to him that Dr Ehrdik was the attending the last time and Dr
Harrison did the block and it was a PERFECT 100% home run. And Brandon said-- "oh!
Dr Ehrik is the doctor scheduled for Monday! (Coincidence?) And since we had our
Post Doc graduation last week ALL of the other Residents have left-- ONLY Dr
Harrison and I are still here." (Coincidence?)

Then we chatted about how he had just moved his wife and 2 little 4 year old
girls to San Antonio. And he looked at my table and said, "oh, I see what you
are reading here. Are you a Christian?". He too is a believer!!!! Oh our God is
just so amazing - affirming, showing His presence, and hugs to me again and
again.

Well, there is my God Story

So, here is my status: all tests, vitals, etc are stable. They all seem to think
the pain I was experiencing was break through pain from the old Nerve Block
(done on May 1st) and apparently this is typical to need a tune up of the block
after this duration. (About 3 months) I am staying here just for pain management
through the pain episodes/flare ups, waiting for the Monday Procedure. Then
Monday I go home or spend the night. They will decide. (I may just come back to
this room to spend the night for Tuesday chemo - IF Dr Dan still wants to go
ahead with that schedule. We'll just make a game time decision on that I guess)

.

In the meantime, I'm resting and hanging out. Had to take a pain hit a couple
hours ago. It doesn't work completely, but just taking it to a dull ache helps
b/c I at least know what it is.

Food: they are switching me from IV fliuds to oral liquids now that confirmed
pancreas is quiet. Maybe then solid food tonight. Basically I am just me,
waiting around 'til Monday's block.

Love,
Carol

Update from Frank

Carol is home resting. All the prayers for the procedure were answered, thank you so much. Her blood pressure was great, vitals perfect and she quickly recovered after the procedure. The plastic stent is out and they again "roter

rooted" out the tumor in the duct and installed a new metal stent.  We hope she will be able to restart chemo when she gets her strength back. The nurses had estimated that it would take about a week from her hospital release last

Saturday evening to regain her strength. Please keep praying for a total healing.

News Flash!!!

Breaking news: Just got a call from Johns Hopkins. They are doing the ERCP, replacement of the plastic stent, TOMORROW, July 8^th at 10:30 am. So please pray for successful insertion of the stent and the general anesthetic. We’ll keep you posted.

Love,

Carol

Lots of News!

I’m home! Ahhh, resting lots at the shore, on the screened porch with wonderful fresh air –so thankful to the docs at JH that got me back from that infection. I am still on some big antibiotics (Cipro and something else) so I’m sleeping lots. Also, they infused LOTS of fluid in me to get blood pressure up and fever down, so I came home from the hospital 27 pounds heavier! I told my doctor I look like the Michelin Tire Man with sausage toes! But I have been “draining”, constantly, it seems and soon I will be back to normal. Over the weekend, I was such a baby at the hospital. I was actually afraid to come home, that we would “miss” something (like a fever!) and get me back into the same mess again. There was a certain comfort about having my “vitals” checked every couple hours. But other than the bloating I was okay to come home, but I didn’t want to! They were great, and said, “sure, stay.” But after a day of lying around there, I had a real contentment that it would be just fine to go home and take my own temperature, antibiotics, etc! We are now in charge of me and doing our best to get me well again to get back into the fight!

 

Now we wait to hear from JH about a couple things: 1.when I go back in to resume chemo. 2. when they do the endoscope to replace the temporary plastic stent in the bile duct that goes from the liver, through the pancreas, to the duodenum with a fatter permanent metal one. (Apparently the infection was caused by “tissue blockage” of the stent they put in the bile duct a few months ago. That backed up and caused the infection.) The emergency plastic stent they put in to relieve to blockage is good for at least 6 weeks and my GI doctor (who is in China at meetings right now and emailed me from there!! Impressive!) is going to schedule me for a permanent replacement (he did the original stent and is fabulous-like the rest of my care team at JH).

 

Thanks so much for your prayers for me…and thanks for your comments on the blog! I can’t tell you how each one encourages me! I realize that I have friends who are funny, encouraging, uplifting, silly, LOVING, and most of all…thinking and praying for me. I am sorry that I don’t have the energy to answer emails and phone calls, but those comments really are just hugs, hugs, hugs.  I know I just have to keep up my part of “us” and not let too many days go by without a blog entry.

 

SO, other family news! Frank retired after 37 years of the practice of law! (Army JAG; Lockheed; Litton; Northrop Grumman) Yep! He had originally intended to retire on his birthday next March, but moved the date up to July 1^st! He is now officially full time Nurse Ratchett and doing a great job at that! Last week his office had a wonderful, very meaningful, going away get-together for him. He came back to the hospital full of stories and comments and things folks had said to him. He was very, very touched. AND he is now the owner of Ping Golf Clubs! Frank has always said he wanted to learn to golf…now he has beautiful clubs and no excuse! Oh….and now he is after me to join him in his golfing adventures. I told him “first things first….I need to get the right outfits if I am going to look cute driving him around in a golf cart!”

 

Many of you have asked about Chip. Well, we just got an update from our favorite Marine Aviator yesterday. He will NOT be deployed to the Middle East in the next few weeks after all (THAT is a gift to mom! Praise God for that!) but instead he will stay stateside and has been selected as the pilot in his squadron to attend an elite school. (mmmm, proud mom moment!) called WTI. It means he will leave San Diego and will be at school in Arizona for six weeks this Fall (3 weeks academic, 3 weeks flying).  He also found out that he was selected for a MEU (Marine Expeditionary Unit – combines troop units and elements from all the different Marine aircraft on one ship.  They pick the ‘best of the best’ pilots to go on a ‘float’ and are expedited to hot spots around the globe as needed. Needless to say only a few helicopter pilots are selected, so that’s very cool.) The timing is perfect b/c they don’t ship out until next Spring.  It will also enable him to finish all his “Qualifications” as well as his WTI which then makes him one of the senior instructor pilots (I think I have this all right, but then I’m a Mom).

 

Newlyweds are doing great. Christine back at work, Erik is in for Summer School, teaching Latin to those lucky boys! No word yet on the “on line” photos from the wedding photographer, but I will let you know as soon as her website is up. I bet she got some great photos of the special day! We can’t wait to see them.  

 

Specifics:

Please pray boldly with me that:

• God will heal this cancer while I am off chemo…and for peace of mind for me during this time.
• all the infection will clear out of my system asap
• when I get back on chemo, I selfishly hope it will be the same “no symptoms”/ no growth. (That was wonderful b/c I truly felt as though I was in the maintenance mode)
• God will bless my wonderful husband who is AMAZING in caring for me and just “being there” through the ugly stuff with such grace and love
• Keep the kids safe

 

Thanks!

 

Much love to you all,

 

Carol

 

Today's Update

Just got word from Frank that Carol's vital signs are stable. They are encouraging her to get up and walk around. And keeping her on broad spectrum antibiotics to fight this infection. No word on when she will be released. But things are lookin' up!!
Sally

Roto-Rooter to the Rescue

Seems that the high fever of Wednesday was a symptom of a "massive infection" around the area of Carol's stent. Most likely due to a blockage in the stent itself. Last night, in an endoscopic procedure, the blockage was "roto-rootered" out and a small plastic stent was put inside the original stent to allow for drainage. Once the infection is knocked down . . . with heavy doses of IV antibiotics . . . the plastic stent will be removed. That will probably happen next week. In the meantime, Carol will be in the hospital a little while longer til they get the fever down and the infection under control.

So . . . a bump in the road for our girl. But for Carol . . . not a problem! She's eager to get past this one, get back on the chemo schedule and back in the fight!!

Sally

A Bump in the Road

Had some bummer news at Johns Hopkins today. When I arrived for my chemo it appeared that I had a fever of 104 and jaundice and liver pressure. So, they admitted me and I am in overnight until they they get the fever down and blood pressure up. Also have to keep jaundice clear. Seems that it’s all being caused by a blockage or obstruction in my biliary stent. Basically only thing to do is a “rotorooter” of the stent which will be done when symptoms are gone.

So now I'm waiting/sleeping here in a very private, modern, large, room. Just
had a xray and EKG in my room! What service :). Now for a stroll with Frank
(the male nurse offered to escort me but you know Frank) through the halls-helps lower the risk of bloodclots and stroke. When we get back they put special compression bands on my legs.

Oh, and my blood pressure was very low when I got in here today - they finally got it up to 83/58 throughout the day and they want to get it up to at least 90. Before they can do anything else. But the good news is that my weight (which started at 153, dropped to 127, is now a whopping 143--WITH no sugar, red meat, hormonal chicken. Yay!!!

Not sure how long I will be in here. But they need to get the temp down,
infection cleared, stent cleared out, and chemo started up again so we can keep
in the fight. I want to keep these down times (no chemo) to a minimum!!!!

I realize, my prayer warriors, that I have given you quite a list to pray for!

Love,
Carol