Home & Hospice

So it's been a bit of a whirlwind week...and gosh, it's only Wednesday!

I last updated you with mom with mom having gone to the hospital via 911 on Monday.  I can now say that as of today, she is home and resting in bed...in the living room!

See this?  A wee bit of a grin from both her and her cat, or at least the picture of her cat I drew for her that's hanging over her head. ;)  The real Jezebel is around there somewhere, maybe still hiding a bit instead of laying in bed with mom (but that's not her bed!).  No doubt all of this has been a bit of a trauma for her as well, to be sure...but I'm sure she'll be up on the bed with mom soon enough.  We know our furry family have special 'powers' that can sense far more about us that we may realize, as I believe it is with Jezebel.  I believe her "new" lap cat behavior that started a few months ago indicated she knew mom was sick before mom knew herself.  Pretty amazing when you think about it.

Now, to recap...her trip to the ER did indeed include a pretty powerful infection in her tummy that was making her feel pretty darned horrible.  On top of that, it was such that her incision from the recent surgery was effected by the infection fluids, fluids that had to be better contained while reducing the infection and hopefully allow some actual healing.  Her couple of days in the hospital included mega doses of antibiotics and she left today feeling and looking a lot better than she went in...I mean, look, you can actually tell the difference between the sheets and mom's face! ;)

Before her discharge from the hospital, there were a couple of family conferences and other discussions.  One of those was with the representative from Hope Hospice.  With mom's participation and approval, she is now officially in hospice care and there will be no chemo.  That's where that fancy bed came from, part of the hospice service.  Hospice basically provides oversight and assistance with mom's medical needs.  Nurses will be available, meds attended to, assistance from a CNA for body care, etc, but they will not be staying to provide any daily living assistive needs...such as trips to the bathroom, food, laundry, etc.

The current hope is that with the infection gone, mom will recover some elements of her ability to do for herself, which she was pretty able to do prior to this latest event.  Allowing "helper" visits as much as possible versus 24/7 care giving.  Hospice assistance is covered by her insurance, care giving is not, so we are trying to plan as strategically as possible.  This will be the time when assistance from her community will be most helpful to us all.  I will be heading down next week for a few days around the 4th of July weekend.  I'll be able to provide some respite for my brother and sister who have quite ably managed this current transition.  We will also be making further assessments as to what kind of assistance we may need and reach out to those able to help us in a bit more organized fashion...so as I've previously mentioned, stay tuned!

Reflecting on this latest and Nan's New Way, I know there are many of you who read this blog who have dealt with similar struggles in your own family.  We know you can empathize with the effects and challenges that are forced upon all involved with this terrible disease that is cancer.  As mom has stated several times, she's not afraid to die because she has her faith, believes strongly and looks forward to returning to her Father's heavenly home.  The reality is we don't really know when that time will come...it won't be tomorrow, but then again, who knows?  Part of that is up to mom.  But until it does, whenever it does, what we hope for is that mom's time in pain is as little as possible and she runs enthusiastically toward the light when it shines down upon her.

Change of Focus

Over the last month - as you've seen on this blog - our family has put a priority on focusing on helping mom realize some good family times, grandson's graduation, and the recent trek & adventures to Mount Rushmore and home.  From this time forward, the family time will be focused differently.

With some help from friends, she was able to make it to church yesterday, something I know is very important to her.  But the difficulty of today included her having to be transported to the hospital via a 911 call.  She was having some extreme difficulty with her ability to get up out of bed and her internal GI systems having minds of their own right now and not behaving normally.  Between my brother and sister and myself, we all had various phone calls including ones with mom, mom's doctors, mom's neighbor and numerous texts amongst the three of us confirming the necessity for 911 and hospitalization.

Both Margaret and Dale were with her at the hospital today, and at this moment, Margaret is still in ER with mom at Loma Linda Hospital in Murrieta awaiting an admitting bed...it's been busy there...hopefully just as a hold before getting her near her surgeon up in Loma Linda Hospital in Loma Linda as soon as possible.  Dale headed to the house to help take care and prepare for her return, along with some wonderful help from mom's great neighbor Katie who has "been there" for mom in so many different ways for many years.

There are still some conversations to be had between the doctors with regards to diagnosis, treatment details or processes moving forward.  However, the preliminary information regarding her struggle at this point looks like it might be an abscess, an internal infection causing the current problems, but not sure yet.  Also don't know if related to her recent surgery, advancing cancer or what the cause is exactly.  However, her white blood cell count is quite low and the hospital has her on strong antibiotics and pain medication.

We were already prepared to start work today toward getting some home health care for her sooner than later, but this situation certainly expedited and increased the attention needed.  Getting mom admitted right now is a big relief for her...and us, frankly...assuring she'll get better and professional care at this moment.  It also will hopefully allow us some more time and medical assistance to arrange whatever comes next.  All this is happening even before her scheduled initiation of chemo treatment on June 30.  Of course, all of this could have an impact on the decision to begin chemo...delayed? when? or if?

Now, here's where the "community of mom" comes in.

With these more challenging times - which will continue - your continued positive thoughts and prayers for strength, comfort, and peace for Nan and all of her caregivers will remain welcomed and most appreciated.  However, both of my siblings are firefighters and have 24-hour shifts for work and I live and work up here in the San Francisco Bay Area.  It's important for us all to continue to be able to work to our maximum ability, which will help us to continue to be able to provide what time and resources we can for mom's care.  That also means we cannot be by mom's side 100% of the time.

So there will be a time in the near future that the call for direct assistance will be at hand for those who are closer and able.  What that might be, we're not quite sure yet - maybe rides to doctor appointments, visits at home - but once we have a better idea out of this immediate crisis, we'll be letting you know. Pastor Brian is visiting mom tonight, we appreciate his time.  I know the Spirit of Joy community loves my mom and will do what they can...and we as a family welcome and are most appreciative of the assistance. Please stay tuned, we'll update you with more as we have the information.

Mount Rushmore Realized!

See that smile...and all the others?  "It was all worth it", she said.

So the adventure to Mount Rushmore achieved it's primary goal, she got to see some beautiful American countryside previously unseen, and she got to check her bucket list desire of seeing Mount Rushmore in person.  It has certainly been no easy achievement to be sure, with stories beyond the blog, but hats off to Margaret for organizing and making it happen!

Here are a couple of shots of the getting started parts.  Driving to the RV and getting settled and ready to go...with Margaret's pups, of course!

Here are some shots from the road somewhere in Utah, I think.

This was the view from the road greeting them into Wyoming, on the back side of some big storms!

And a pretty shot of the "other" travelers on the road! :)

Then this morning was breakfast in Custer and onto Mount Rushmore National Memorial.

This will be as far as mom goes on the road trip as they are heading to the airport right now to have mom fly home tonight.  Unfortunately, the road was a bit tougher for her than anticipated and the mountain elevations and sitting for long drives didn't help the edema in her legs.  She really would be pushing it too hard to continue on for another 4 days and jeopardizing the need for medical care too far from home.  So the wiser alternative was to get her back home sooner than later.  But, the important thing was...mission accomplished...and she's got her hat - and some memories - to take home!

Margaret will continue on with the RV and some dog training that was scheduled in Salt Lake City before she gets home on Monday.  My brother, Dale, will be picking mom up from San Diego airport tonight and spending the night with her to make sure she's settled back home okay...and we'll all breathe a sigh of relief at that.  We've talked with Pastor Brian asking for some assistance in check ins over the weekend as well. We as a family will regroup next week and figure out what's next in Nan's New Way...and ours. :)

Holy Smokes...what a day!

Wow...a full moon on Friday the 13th...and since it's been a bit of a wild day...let's just start by letting loose with a full moon hoowwwwwl! :)

Okay, now first...the oncology visit.

Margaret met mom and I to meet with Dr. Kishore Sehgal in Murrieta.  Pulling no punches, Dr. Sehgal confirmed that mom has adenocarcinoma.  Looking at the marker in the blood that indicates severity, mom's has doubled within the last month and is a level nearly 30 times the normal rate.  What this says is that her cancer is pretty aggressive.

Chemo is the only treatment option available that may extend her life with some level of quality of life preservation.  There are basically three levels of chemo that could be used.  The doctor wouldn't use the highest level with mom because it's just far too strong.  The first level alone wouldn't really do anything for her.  So, going with the #2 "just right" option will be a combination of Gemzar and Abraxane.  As every person reacts differently to chemo, she will have to wait and see how she reacts.  At that point, she will decide if she's willing to continue chemo or she also knows she has the option of just stopping treatment and shift to a hospice level of care to live out the rest of her life as she wishes and is able.

The doctor is scheduling a treatment of once a week for three weeks, then off a week.  Each visit is approximately 2-2.5 hours on site in Murrieta.  We do not yet know how long that treatment cycle will last...could be just once, but there are multiple factors that creates the "it depends" response.  We also do not yet know when the treatment will begin.  First, Dr. Sehgal needs to get clearance from Dr. deVera that all things surgical are good to go and he can begin treatment.  More importantly, mom needs to give permission to begin too!  More on that in a minute.

After that appointment and on the way to Margaret's place, there was a short visit to Kohl's to get a few new, comfy clothes on sale, as the ones she has right now are really just too big.  This will also come in handy soon...as in starting this Monday for the road trip she and Margaret are about to depart for.

Yes...a road trip!

One of the 'bucket list' items mom has mentioned is she would really like to see Mt. Rushmore.  So, as she is wont to do, Margaret immediately started making that happen so that we can get her there before chemo begins.  And when I say immediately, I mean...IMMEDIATELY!  By the end of the day, Margaret had the route planned, the RV reserved, dog training visits scheduled in both Salt Lake City, Utah and Colorado Springs, Colorado (mom likes watching those!) and an itinerary to Dale and I before the end of the day...because, they're leaving on MONDAY!  She's got nothing on "no time like the present", to be sure!  I think it a bit of a whirlwind for mom, and she knows she'll be exhausted, but she's also excited...and she's determined to "see" as much as of America possible during their trip! :)  She's never been up to that part of the country, so this will all be new to her.  The good thing is Margaret is renting an RV that mom can go lay down as need be and the dogs can also be free and not crated up.  Margaret had been thinking about doing something similar with just she and her dogs, but here's an opportunity to do two things in one.

Might I say that Margaret is such a multi-tasker and planner that she started organizing this when we were in Kohl's, continued while we cooked and then finished up before bed! ;)

Right...and speaking of cooking, check THIS out!

Hard to see it all, but from left to right we've got tins of cheesy scalloped potatoes, macaroni & cheese, bean soup with the green lids, split pea soup still cooling and tins of "pocket meals" that include some either potatoes or brown rice with broccoli and tilapia...all of which have been primarily cooked (except the fish) and all mom will have to do is either finish it off while warming in her toaster oven or 'new' micro wave.  Mom's micro went kaput quite a while ago and she was getting by with her stove, oven and toaster oven.  However, with it harder for her to stand and cook, we wanted an easier way for her to warm up and/or cook some food...and a St. Vincent dePaul thrift store microwave was just the ticket Margaret & I picked up on the way to the market...we scored on our first try! :)

The rest of the afternoon Margaret and I cranked in the kitchen...we were quite the team!  She's the better cook, so I chopped the mise en place and played sous chef while Margaret cooked the soups and made the cheese sauces.

When we were done, we had prepped no fewer than thirty small meals to stock my mom's fridge.  Thought it would be a little more tetris-like in the freezer, but no problem, mon! :)  We were thinking, hmmm...might be a specialized catering business in this...so much more personalized and yummy than any silly frozen food, corporate prepackaged stuff would be. ;)

So...big day, don't you think? 

Mom's asking a friend if she can watch her fur child cat Jezebel during the trip, and her pastor has assured her, they will help make sure the kitty is cared for.  Thanks ahead of time to mom's Spirit of Joy family...it means a lot to her.

Mom is doing okay with all this news, accepting that when her Lord calls her home, it will be time.  In the mean time, she appreciates the continued prayers, laughter and positive thoughts from you all.  She will continue to strive to appreciate each day and is learning, too, that there will be the time when she may need your help as well...even if it's just a simple visit of companionship.

After about 3 weeks down here, I will be heading back up north on Sunday after taking mom to church.  I'm sure I will be up and down with some frequency, but Margaret and Dale will be the first in line for chemo appointments and checking in on mom as she starts that phase.  I will continue to write this blog and keep you all up to date as possible.  Thank you all.

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!