On to the next steps...

It's been a week of some recovery pain, some of the 'cancer pain' presenting again and lots of rest for mom.

She's hanging in there and is recovering from the surgery relatively well. She did have a bit of a hematoma (bruise) inside at the bottom end of the incision that caused some bleeding. It was a little disconcerting at first, but doc said no problem, it's common.  What's not common, however, is me learning to "pack a wound"!

When we headed to the doc's on Wednesday together her staples removed, he confirmed the hematoma. The treatment was leaving the wound open while it heals from the inside out. But for a couple of weeks, this 2" hole has to be repacked twice a day with a couple of moist gauze and the covered with a surgical pad. Now, I'm not really that squeamish, but yuck...kind of gross! I get to do it now, but then mom will be able to do it herself. Fun! :)  That was the last time mom will see Dr. deVera for a month.

After the doctor, we went to Shiela McKee's house to pick up my sister's dogs since she was just getting home from Hawaii, we were nearby and heading to Margaret's for lunch and a welcome home hello!  The dogs had not been in the back of my truck before and weren't quite sure what to do with all that room and no crates! Of course, they checked out all possibilities and kept us company. ;)

Veya would have much rather been with us up front.

The rest of the incision is healing nicely and she said it felt better when the staples were removed. She's moving around pretty well and she's getting the walking in when she's up to it. Last night, we walked around the Hemet mall for a different view. ;)

Now, the first steps in the next chapter...first thing tomorrow morning (Friday) we go to the oncologist for her first appointment. She'll have some info to get, some questions asked, and I'm sure other discussions. Since Margaret has returned from Hawaii, she'll be joining us at the appointment - something she's been doing a yeoman's job of helping walk mom through the info and options presented. We don't know that we'll have any definitive answers on exactly what will be next, but I'm sure there will be plenty of food for thought for mom to consider.

We'll let you know more when we know more...as always keeping it positive.
Happy weekend!

Home is for Resting

It's been a couple of days home now and generally, mom is doing okay.  She has decent moments and a lot more painful moments...currently the focus is on the pain from the incision rather than the other pains she'd been feeling prior to the surgery.

Today wasn't a great feel good day physically.  However, she pushed herself to make sure she got her well-needed spiritual and emotional feel good boost...and surprised just about everyone when she showed up at church this morning.  Many greetings, gentle hugs, well wishes and continued prayers from her church friends.  And without any planning, I apparently was decked out in the right colors today in my red checked shirt, fit right into the Pentecost theme today. :)

After church...this was mostly mom's activity of the day...accompanied by her bedside guardian at her post...napping right along...some guardian. ;)

With mom being ill for so long and not able to do as much around the house as she'd like to, and limited on what she'll be able to do any time soon...I took the opportunity to start on the Merry Maids extra special cleaning offer...me...for free!  How much more special can THAT be? ;)  I didn't really ask her, but I know I just feel better when my place is nice and clean...so I can at least do that while she does the above. :)

She's still not quite up to visitors at this time.  I would venture a guess that after the appointment on Wednesday when she gets the staples removed, she might be feeling a bit better to be a little more social.  Church was a long time for her to be sitting 'pretty', and right now, horizontal is a lot more comfortable than vertical for any substantial length of time.  But stay tuned...for those of you who are more local and able to visit...she'll definitely need your companionship and friendship soon.

Thanks to everyone for reading and continuing to keep not only mom in your thoughts and prayers, but me and the rest of our family as well.

Home...and a happy cat

This is Jezebel.  She is happy now (not this picture! ;) because mommy is home. :)

Much to my surprise, when I arrived at the hospital this morning, one of the docs from the transplant team (that's the unit she's been in) was in talking to mom about heading home today...really?  Today?  Already?

Considering the shape mom seemed to be in today, I was pretty surprised.  She had not slept well at all last night, so first, she was very tired.  Then, she had a coughing spell that pushed the pain to max on the incision.  That cut is no small slice...from about the solar plexus to below the panty line...it's at least 8"...so there's a lot that can hurt.  So a good chunk of the morning was sleeping off and on.  I kind of think of it like other injuries or stupidly intense workouts...it's always the second day after that is more painful than the first and then gets better from there.  I hope I'm right about this too!

All the doctors visiting throughout the day kept talking about sending her home today...she's eating solid foods, her BP has normalized, her O2 was acceptable...everything was looking good.  All she needed to do were the personal ablutions sans catheter...so walking trips to the bathroom to take care of those!

Getting up and down out of bed wasn't easy and certainly not pain free.  And once all the fluids they were pushing and she was drinking to make sure she was hydrated started working their way through and with a medical assist for the other end...we had several visits there throughout the afternoon... check those going home boxes!

I was a bit nervous on her pain levels and helping her at home by myself, but we still had a couple to three hours before she'd actually be cut loose, so there could still be improvement...and there was.  So, after a final visit from Dr. DeVera and the discharge papers were done, away we went!

First, I want to say that the crew in the Loma Linda Medical Center Transplant Unit, particularly nurses Amanda and Kathleen, supervisor nurse Kay and nurse assistants Amy and Heather were great.  Amanda was a ray of sunshine to all her patients (I could hear other rooms, and mom had a roommate...who could use a few thoughts and prayers herself, a young woman who had just been placed one the liver transplant list today...and had 8 teeth pulled there at her bed, a first I've ever seen/heard of at hospital bedside! Don't know how those two issues are connected, but the poor thing's face was twice as wide!), Kathleen was a funny yet hyper attentive by-the-book young Filipina who liked to sing (not well ;) and the TV show The Chew.  Amy is a farm girl who grew up in the nearby valley and is in culinary school and Heather is a...well...hmmm...helpful and happy, bouncy sort...who *looks* like a Heather...tall & skinny, blond hair and intense light blue eyes! LOL!!  The crew was generally very good...there were times of craziness that all nurses face, but generally, great service...including the attending doc, who's name I don't remember...but he's Jewish and liked my pendant. ;)

However, the only question I had...which I found quite surprising...is why did I get to drive mom's wheelchair out of the room and out the door of the hospital by myself?  I have never been anywhere that the hospital didn't require staff to accompany the patient out the door.  I had to park mom in the foyer while I went and got my truck, then I had to get her into my truck on my own.  It was fine, we had no problems doing so...but that was just really weird to me.  Thought it was a liability issue for the hospital requiring them to be responsible for the discharge all the way out the door.  ANYway... it all worked out just fine...the only bummer is that I drive a kind of bouncy Toyota Tacoma truck with broken AC...not exactly as comfortable as a smooth riding Caddie would have been. ;)

I packed her in with pillows and blankets to avoid rolling back and forth and the pillow on the tummy to hold tight on bumps, etc.  I drove as slowly as is feasible on a SoCal freeway and tried to avoid as many bumps and potholes as possible!  She did pretty well all the way...sort of napping in and out and powering through the road bumps.  The trick with coming home today unplanned is that I had no opportunity to prep the house at all.  But hey, we'll manage...let's just get there!

So...now, she's home and resting.  Already made a couple of trips to the bathroom on her own...so things are looking good!  She has no restrictions except swimming...showers are fine, but don't soak yet...not until the staples are out next Wednesday, and she'll have an awesome "Frankenstein" scar with this one!

Hopefully, with some decent sleep tonight and in the morning, she may be more amenable to visits or calls.  If there is anyone interested in visiting, please check with us first with a comment or message, or if you already have our contact numbers, give us a call or text to try and arrange a good time.

Thank you everyone for all the messages and thoughts and prayers and virtual hugs.  Today was the next big step on the New Way for Nan...stay tuned!

FOOD!

After a 2 days of only little bits of water, 2 cups of broth and 3 snack cups of jello...finally...FOOD!  See her smiling behind that spoonful of mashed potatoes and gravy?

Yesterday there was an order for no solid food due to post surgery.  Needless to say, she was a starvin' marvin.  Today, she almost had lunch, but I ate it instead...oh yes I did!  Just in time, too, I was hungry!

When I got here this morning and mom was bragging about how she was going to get to eat real food, I checked in with the nursing staff.  I noticed she's drinking and is going to get food...but, she's scheduled for an EUS today.  Why is she going to eat, shouldn't she be NPO (Nil per os (alternatively nihil/non/nulla per os) (npo or NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons.)?  Ooops, someone missed that order!  I successfully got the NPO order confirmed for her and back to tiny sips of water only...with an anticipated procedure time of 1-2pm-ish.  Ooooo, mom was NOT happy with me!

Wasn't until about 2:15pm until Dr. Gastroenterology Fellow (can't remember his name) came to talk with her about the procedure again.  Their concern is that her blood pressure has been pretty low, going up and down with her activity level and drug level.  Because elements of the procedure - anesthesia, etc. - would further lower her BP, they did not want to do it today until her BP stabilized.  She had a consult with the GI team last night, but she wasn't exactly cognizant and doesn't remember it.  I was listening, but something new was brought up today...and mom hearing that said, nope...don't want it!

The procedure is not the Celiac Plexus Block, it would have been a Celiac Plexus Neurolysis...they are different.  The block is temporary, the neurolysis is more long term and/or permanent. 

The celiac plexus is a group of nerves that supply organs in the abdomen.  A celiac plexus neurolysis may be performed if you are experiencing severe chronic abdominal pain from cancer or persistent pain associated with chronic pancreatitis that is not relieved by medications or other conservative measures. It is expected that the neurolysis will provide long-term relief (3 months or so) of your pain.

Really, this is for when meds aren't controlling pain anymore.  And talking about the risks, the first is only the 50/50 chance of success.  Additionally, this Dr. reviewed some of the risks of the procedure and one that wasn't mentioned last night that caught my ear as much as mom is "permanent" diarrhea...say what?  I saw diarrhea on the risk list, but not "permanent".  Oh, that will just not do! 

Weighing the risks against her current ability to control her pain with oral meds, she decided she didn't want to have the procedure and save it for when she may really want it and need it.  The doctor concurred that would be the better choice, as did I.  So, the NPO was cancelled and an order called to clear her for solid foods.

Now, can she please get some FOOD?  

Forget the order...I hustled down to the cafeteria.

Immediately improved attitude upon ingestion...whew! ;)

UPDATE:
The day closed out with a surprise visit from Pastor Brian of mom's church Spirit of Joy, weaning from the pain i.v. meds, three trips around the nurses station and sitting in a chair...playing her own iPad. ;)  Overall...a good day...one day at a time.

Surgery Day & THE Update

First, thanks to everyone via Facebook and this blog and whatever way you’ve communicated your thoughts and prayers for mom and all of us!  She hasn’t seen all of them yet, but she will soon…and as promised, here’s how the day has gone so far.

You know, 0300 is early.  But we had an 0500 report time to Loma Linda Medical Center for surgical check in, so early shower and coffee fixed (mine!) and away we went.  After mom was sent up to pre-op stage 2 and they kicked me out, I went down and signed up for the text updates…pretty nice system.  I got the text that “surgery started at 8:19 and Nan is doing fine”. 

We were told by Dr. DeVera last Friday at the pre-op appointment that the first part of the surgery would involve some more pathology tests, since officially they hadn’t formally confirmed that this is cancer and confirming a diagnosis was the first step.  This would be within the first two hours or so.  If they found anything outside of the pancreas, they’d close her up and not do the planned Whipple procedure because the cancer needed to be isolated to the pancreas only for that to be done.

By about 1030, I got the text that I needed to call the OR9, figured this would be the news regarding the pathology.  I called and spoke with the doc who explained that he had started the surgery laparoscopically (much smaller incisions for a camera and instruments and a quicker recovery), but due to scar tissue she’s got from other abdominal surgeries, he had to make a full incision.  Then the news that, indeed, they got a positive test from some lymph nodes near the liver, which means no Whipple.  And the same information also confirms that with cancer in the lymph system, it’s already spreading, so the next step would need to be chemo…not really the news anyone wished to hear, but not a huge surprise either.

So, they closed her back up and to recovery she went.  Thinking we had a couple of hours in recovery before she’d get to a room, I had a hankering to get a computer-carrying day pack from a nearby Office Depot since I forgot my daypack at home and carrying this laptop and my iPad was a bit heavy in a BYOB bag! (It’s easier for me to type and update the blog on my laptop, and mom has already commandeered my iPad as I currently type…she’s a solitaire addict! ;)  But of course, while we were out for about 20 minutes (successful purchase in hand), we got a text to talk to the doc.  Hmmm…already did…what’s this for?  We hustled back, I called to hear that she was in recovery asking for me, but of course I couldn't go in there...so I got the run down on when she’d get transferred to a room.

Although Dale & I talked with the doctor, we weren’t sure if the doc was going to talk with mom before we saw her or if we’d be the one to break the news about the surgery and the results.  Sort of thankfully, the doc got to her first…and much to both of our surprise, mom even remembered what he said!  Surprised because she was still in that drug induced stupor you see similar to those viral videos parents embarrass their kids with after they get their wisdom teeth out…but we were nice, the cameras stayed in the pockets. ;)

The important thing to emphasize right now is mom is completely aware and knows the story and wants you to know too...there are no secrets at this point.  The bottom line is that it is indeed pancreatic cancer and it’s staged at about a 3.5, considering the lymphatic involvement.  She’s not thrilled with the news nor the need to make more decisions.  However, at least we all have some definitive answers as to what she is facing and some of the battles ahead.  Her mood remains the same, thinking positively and keeping the spirits up…which is also requested to continue from everyone as it is helpful for us all to do the same.  Attitude is everything when it comes to getting the most out of the fight!

And, to help improve the prognosis for a good attitude while making tough decisions, the primary goal for now will be pain management.  She’s currently being assessed as to the viability of providing a “celiac plexus block”.  Instead of the standard method of the procedure, they’re looking to do this via endoscopic for her.  Here’s a layman’s description of what that is from medcentral.org:

“What is a celiac plexus block?
A celiac plexus block is an injection of local anesthetic into or around the celiac plexus of nerves that surrounds the aorta, the main artery in the abdomen. Normally these nerves control basic nerve functions. In certain conditions, these nerves can carry pain information from the gut or abdominal organ tissues back to the spinal cord and brain.“

And why do this from John’s Hopkins:

“The celiac plexus is a group of nerves that supply organs in the abdomen.  A celiac plexus block may be performed if you are experiencing severe chronic abdominal pain or abdominal pain from cancer.“

Because of the large incision and to monitor the block procedure (if done) and pain control, she will be in the hospital for about 5 days.  The doc anticipates her going home by the weekend, as long as she’s moving, peeing, and eating to their satisfaction too, of course.

This afternoon in between snoozes she's been awake, playing solitaire and as cantankerous as ever...particularly because she is very hungry and thirsty...as we have heard *multiple* times. ;) The answer is still no for that as of yet...so she continues to suck on her sponge pops.  She is in a step-down unit, sharing the room and I will not be able to stay here tonight nor are visitors welcomed as of yet.  However, please feel free to leave a message here and we'll be sure she gets it.

Thanks again to everyone.  This "new way" is still being discovered and navigated by us all, your support is much appreciated...stay tuned for more when we've got it, but for now...good night!

In She Goes!

Well, it's been a bit of a challenge the last couple of days...nerves, questions, some fear...more about the yet unknown status of all the tests and diagnoses to date...but today should offer some pretty definitive answers one way or another!

Yesterday was a good family morning brunch with us kids and mom...and we had a good discussion and rally call. :)  Got the stuff said that needed to be said and the stuff done that needed to be done... the kitty a new poop box, you know...the essentials. ;)

The morning wake up call came early so we could be here in time for the 5am check in. She got fitted out and I got kicked out when they took her up to the final pre-op stop at about 6:30am.  But we had a moment to share the positive vibes...thumbs up & happy tie dye. :)

Here's to a successful outcome and skilled surgeon, docs and nurses. Stay tuned...

Sunday's church & Splash Dogs

Today was Sunday, so naturally mom's visit to Spirit of Joy this morning...sharing cards for this blog to her friends at the church.  Welcome!

This afternoon was spent at a favorite place, Country Kennels for a Splash Dog contest.  Both of Margaret's dogs play along.  Mom even threw the bumper for Bo, who ended up with a personal best!

Then it was Veya's turn...she's a star and ended up with a blue ribbon again!

A good day to keep the mind and the heart busy.  

UPDATE:

And just because, here's the video of Veya's blue ribbon jump!