Friday, November 11, 2005

Tuesday, November 1, 2005

Mom is Home.

Miriam Eileen Hull (Mom) transitioned gracefully and decisively out of this world and into the arms of God this morning at 6:18am , leaving behind a body that simply could not bear the weight of her enormous and beautiful spirit.  She was undoubtedly greeted with smiles and laughter by the loved ones who had gone before her, surely with her brother Mike standing proudly and adoringly at the head of the pack.

Mom’s final day was filled with beautiful visions and wonder that we were so honored to witness.  Her laughter and peaceful smiles punctuated some of the most fantastic quotes:

“You ready? Ok, Let’s Go”

“My Grammie is in my house” <smiling>

“Oh my GOSH…. LOOK at this ROOM!”  <Smiling in wonder>

“WOW…… Would you LOOK at THAT!”

“I’m ready to do whatever it is you want me to do” <Our personal favorite>

Even on the most difficult roads of this path, there was never a moment that the most wonderful qualities of Mom failed to shine through.  She is SO DEARLY loved, and will be SO DEARLY missed.  On behalf of Mom’s 5 children, I want to truly and deeply thank each and every one of your for your diligent support, faith, prayers, love, and kindness.  Mom felt them every step of the way, and we could not have made it through this time without them.  We ask that you continue to bless our family as we struggle to accept and move forward from this terrible loss.

With Love and Kindest Regards,

Paul, Christine, Jason, Jennifer, Erin

Sunday, October 30, 2005

Lesson Learned.  Never underestimate the power of the human spirit.

I greet you tonight in a thankful state of awe.  It’s difficult for me to describe these past couple days with Mom, as I struggle to find the words to describe it to myself.  Simply put, we have been witness to a spirit that simply will NOT be bound to the broken body that houses it.  Mom has given us 48 hours of amazing little gifts.

From motherly advice, to broken discussions of nonsense; From tearful and candid chats about dying, to hilarious observations and commentary; From gathering items to prepare for “her trip”, to gifting her special possessions. Every bit has been so unexpected considering her physical state last week, and although nothing has physically changed in these past 2 days, Mom’s spirit has somehow managed to take charge and enable her to deliver her powerful messages this weekend.  Naturally, our hearts twist and break a little each day that we accompany Mom out of this life. But those hearts are quickly caressed and filled with the laughter and love that seem to pour through Mom, and into us.  It’s an emotional rollercoaster that we would pay any price to ride.

Let me share a quick story with you.  It’s 2am on Sunday morning as I head into Mom’s room to give her some medication.  I walk into her room to find Mom and Christine chatting away about something I can’t even recall.  I was a bit surprised to discover this, and even more surprised when Mom requested breakfast!  (Keep in mind that Mom has been off of solid foods for 10 days or so at this point)  We offered other options, but Mom REALLY wanted to have breakfast with us right then.  SO, off we went into the kitchen to see what was on the menu.  The “special of the eve” was scrambled eggs, toast, apple sauce, and orange juice.  Mom was so excited she spilled her juice, and couldn’t WAIT to start eating. Once breakfast was served, Mom, Christine, Jennifer, and I had an early bird breakfast fit for a Tahitian Goddess.  Mom was absolutely thrilled!  (Of course, she threw everything up 20 minutes later, but didn’t complain one single time!)

The meal was topped off with one of Mom’s classic quotes.  She asked for some salt and pepper on her eggs, and as Jennifer handed Mom the salt, Mom said:  “I would really prefer the Sea Salt, but I’m dying so who the shit cares!”  We were in hysterics.

It’s those kinds of semi-lucid comments and experiences that we will cherish forever.

What awaits us tonight or tomorrow?  I’ve learned that I don’t have the faintest idea.  This plan is so much larger than our inability to understand it.

So, Until then.

Friday, October 28, 2005

Nothing short of amazing!

Please believe me when I tell you that we have been "at the ready" SEVERAL times in the past few days because Mom's condition seemed eminent.  In fact, that is exactly what we did tonight when Mom was unresponsive to our attempts to talk to her, move her, or wake her.  THEN, in true Miriam fashion, Mom's eyes popped open and she started talking to us!  We nearly hit the floor!  She sat up, spoke very coherently, and wanted to use the bathroom.  After a trip to her bedside commode, she was standing with Christine's assistance and moving her body to the music of John Denver playing on her radio.  (She loves John Denver, so we've been playing it softly in her room lately)  Then as I wrapped her in my arms to lift her up and lye her down, I could hear her singing the song in duet with Mr. Denver in my ear.  It was precious.  She even cracked a few jokes which had the ENTIRE room in stitches, and utterly stunned.  My Aunt Debbie was laughing so hard she had to excuse herself to the restroom.  We spent the next 90 minutes doing everything from helping Mom pack for her "trip", to chatting about anything that came to Mom's mind, to having tearful moments of clarity in realization of this time.  A gift that everyone in the room will cherish forever!

No more than 3 minutes after this episode, Mom is back in bed talking at length about "her trip" that she's going to be taking.  She asked us to gather a few more items from her room that she "will need to take with her," and is asking lots of questions about this inevitable trip, and giggling at every turn.  No lie.  We continue to reassure her that everything is taken care of, and that we've got it all packed for her.

Naturally, we're all saddened at the idea that this may be her "last stand", but that choice is completely out of our hands.  Instead, we'll be thankful for such a gifted time.  I wish my brain had a record button for times like this.

Its 12:18am as I finish writing this on Saturday, November 29th.

Thursday, October 27, 2005

It's 8:33am and Mom's strength is keeping her with us, though we are getting closer by the hour.  She is very comfortable, in NO pain, and surrounded by her children.  She's past the point of phone calls or visits, but your thoughts and prayers are needed and so very appreciated!

Tuesday night was our most challenging time with Mom.  She experienced an episode of what hospice calls "pre-terminal agitated hallucination" which made her very restless, defiant, and scared.  With the help of all her children and Vicky Kisow (whom she specifically requested), we were able to finally calm Mom down, get her relaxed again, and help her back to the beautiful place in her mind that she's been repeatedly describing to us daily.

By Wednesday morning, Mom was back to that beautiful place.  We spent the entire day reassuring her of how much we love her, how happy we are to be with her, and that we're all going to be fine.  She requested specific foods which we happily prepared for her, and she was elated.  She even wanted to come out and sleep on the couch with all of us kids to watch 20 minutes of TV with her.  Mom's nurse Becky made a visit to make certain that everything is going as smoothly as possible after the Tuesday night episode, which it is.  Later in the evening, Mom started telling us that she was going on a trip, and wanted to pack everything she would need.  She actually got up (with one of us on each arm of course) and grabbed a pile of things in her room, told us to put it by the front door, and then laid back down to sleep before her trip.  At around 6:30pm, it was looking as though she was ready for that trip.  We all gathered around her and held on to her to reassure her that it was OK to take that trip.  11:00pm rolled around and we realized that God and Mom have a plan all their own!

It appears that Mom has a few extra things to "work out" before she leaves this place, which we're happy to accommodate.  The sadness and surreal experience of witnessing this time is quickly and smoothly sidelined however, when Mom bursts out with a big laugh or giggle.  It happens often, and it reminds us of exactly who Mom is every single time.

The other day while I was propping pillows behind Mom's back and under her arms so she could sit up, I asked "does that feel good for you Mom?", to which she replied "I feel like a Tahitian Goddess!"  That is certainly one for the books.  We keep reminding her that she is a Tahitian Goddess and she laughs every time.  In fact, during the time that Mom wanted to be in the front room to visit with her kids, she pulled a blanket over her head and was actually showing us what this Tahitian Goddess looks like!

This morning, although Mom's appearance and breathing have changed, she is still very peaceful, very comfortable, and at times a bit playful.  She is incredibly polite even at this stage, thanking us every time we give her a sip of water or scratch her back.

I will be in close touch with all of you as soon as God and Mom let us in on their secret arrangement.

Thank you all so so much for the confirmation of prayers, thoughts, and love.

Tuesday, October 25, 2005

Warm Greetings All

Mom is transitioning comfortably and surrounded in love.  It seems as though we are nearing the end.

Mom has been standing with one foot here, and one foot on the "other side" for several days now.  Her moments of lucid availability are smaller and smaller by the hour, but I must admit she is giggling the entire way.

Yesterday, she was telling us that her brother Mike (who passed away in 1997) was calling for her.  She asked to have all of her children over "for crackers and cheese."  We quickly gathered all my siblings and our brother in-law Gary, and sat with Mom to gift one of the most difficult and beautiful moments we will ever spend.  We all sat around Mom and asked her to look around the room and see that we're all here, and spent the next 25 minutes telling Mom that it was ok to go ahead and be with Uncle Mike.  We told her that we Love her very much, that she will ALWAYS be with us, that we promise to take care of each other, that she doesn't need to worry about us anymore, that she can guide our lives from heaven and visit us in our dreams, and that she had done a good job.  Mom knew exactly what was happening and responded with tears, thanks, advice, and comfort.  She ended our gathering by blurting out "Well this was just totally awesome!"

Three of Mom's siblings came to the house to sit with Mom directly after us kids, and had the same discussions with her.  It was a true gift.

Mom slept much more effortlessly last night than the night before.  This morning she is speaking perfectly clearly about heaven, seeing people and figures around her, and about conversations she's having.  And can you believe the following direct quotes from this morning?:

"What am I still doing here? I've been seeing flashes of light, and they've got a GREAT set up!"

"Its like all the lights of ALL the casinos in my own space.....I cant go to heaven without hitting the casinos"

She's asking for specifics about her services and wants Christine to read the Bible passages that have been chosen.  She's triple checking with each of us to make certain that we know how to handle her belongings, and talking with us about what she sees.  Even as I write this, I just heard her giggle again.

PLEASE be with us and pray for Mom today!  We will be standing beside her until God lifts her from us.

Friday, October 21, 2005

Hello Again

While I can’t promise that I will update the site every day, I’m really trying to provide as much information as possible.  Each of you deserve the same support, love, and respect that you’ve shown to Mom and all of us, and this is my attempt to provide a touch of that.

Mom is as well as can be expected.  Let me assure you that she is NOT in any pain.  We have a very close eye on every aspect of her health at this point, and our goal is to make Mom as comfortable as possible, through the fantastic guidance of our Hospice team.  Her recent health decline is best described as a “slowing down.”  Below are a few noteworthy changes:

• No more walking alone.  Mom’s medications make her very wobbly and unbalanced at times, so any time she wants to use the bathroom or walk around the house; we adhere to the buddy system.  We’ve even got a bell at her nightstand and a sign at her bedside that reminds her to DING A LING if she wants to get up.

• No more solid foods, unless she specifically requests them.  It seems Mom’s recent vomiting was a result of her body being unable to effectively process hard foods.  We’ve moved into a regiment of soups, Jell-O’s, ensure vitamin drinks, and any other liquids she might want.  It seems to be doing wonders for her cramping, and she has YET to vomit since the omission.

• A slight alterations in pain medications.  We’ve moved to a higher dosage Patch to try and avoid having to administer oral meds as frequently.  We’ve also raised a dosage of medication that keeps Mom from feeling agitated and unsettled.  ALL of these medication changes coming specifically from Mom’s doctor, or course.

• Rest.  Lying down, sleeping, and resting are the most suitable activities at this point.  It’s a good thing that this is what Mom wants to do most!  Hospice has also been kind enough to provide a Home Health Nurse who comes to give Mom In-Room sponge baths!  Today was Mom’s first, and she LOVED it.

Mom’s hospice doctor (Dr. Mehren) came to visit today.  It was a fantastic visit, and one that has helped Mom settle things and find comfort and trust in what Dr. Mehren talks with her about.  They are very candid discussions, but also very necessary and in fact heart-warming at times.  Dr Mehren’s chief concern (aside from making certain that Mom’s pain is under control) is that she doesn’t fall down.  Patients on this type and dosage of medication don’t always realize that they are falling, and as a result, have terrible spills.  She made Mom promise to use the bell, which she willingly agreed to.  (We also have a baby monitor in the room, so all she needs to do is merely call for one of us, and we’re there in a blink…. Of course, there is usually one of us camping out in her room anyhow, so we feel very safe)

Additionally, Dr Mehren asked Mom to trust in our care.  Mom’s disorientation makes her very confused at times, and until recently has tried to “keep up” with what she takes, why, and when.  Mom happily agreed to trust that we know exactly how to handle her medications and breathed a huge sigh of relief when she said “goooood… you can take care of it all!”  I promised Mom I wouldn’t slip her a Mickey while she wasn’t lookin.

We were given a handful of care giving tips and expectations by Dr. Mehren, which we are preparing for in every way.

Dr. Mehren had wonderful things to say about Mom, and promised Mom that she was personally going to do everything she could possibly do to make this transition as comfortable and dignified as humanly possible.  She is fantastic, and we are very lucky.

SO….. With all that said, Mom’s days are spent primarily asleep.  She continues to shock us with brief periods of rejuvenation, where she seems lucid and completely available.  It’s great to have that time with her still, and it allows her to feel in touch and somewhat productive.

Her sleep is only sleep in the clinical sense, and is FILLED with chatter and full conversations that she speaks so clearly, you would think she was talking on the phone.  It’s amazing to hear, and in truth, some of the things she says are down right hilarious.  In addition to the talking, there come a lot of hand gestures where she’s pointing or picking at things.  And, the most prevalent and beautiful thing to hear is how often she giggles during these dreamy conversations.  A simply joy to hear.

We feel confident that Mom will stay right here with us until the end.  We ask that you pray for a progression which allows this.  Mom has an incredibly deep faith which she truly trusts and believes will keep her safe, provide a plan, and gently walk her into God’s hands.  There is nothing more we can ask for.

I promise to be in touch as often as possible

Thursday, October 20, 2005

Dear Friends and Family.....  Not much to say in this update, so forgive the brevity.  The Pleural Tap on Monday did not bring the success we had hoped for.  They were unable to get to the fluid in Mom's right lung, but a new set of X-Rays showed that it's not specifically the fluid that is causing any shortness of breath.  In actual fact, the tumor nodules that have all but completely infested her lungs are the true culprit.

Additionally, these last 4 days have brought a quick and considerable change in Mom's health.  In these past couple days, Mom has had bouts of vomiting, increased disorientation and confusion, and her energy level has dropped dramatically.  She feels comfortable lying in bed, but that's about it.  Our hospice nurse was here today and we're taking all the necessary steps to ensure Mom's comfort.  We've been instructed to move to a liquid only diet at this point, to control any vomiting or cramping associated with constipation.

Hospice is heavily involved and will be here almost every day for the duration of Mom's fight, however long that might be.  We continue to stand beside her and care for her every step of the way.

More to come....

Sunday, October 16, 2005

Hello and welcome back.  It’s been a considerably less eventful 10 days since the last update, but noteworthy none the less.

Before getting to the heart of things, I wanted to take a moment to touch on an important aspect of this website.  Truth.  The intention of this site is two fold; to keep Mom connected and in close touch with each of you (collectively and individually), and secondly, to keep each of you embraced and informed through this testing time.  While I constantly aim to spin a smile into my updates about Mom, focusing on positive and cherished moments, I hope it is abundantly apparent that my paramount concern is to provide you with the truth.  At times, I realize that truth is not easily hear (read), and please believe that this same truth is not easily told (written).  However, my commitment to you, especially as Mom’s struggle progresses, is to always arm you with the truth.  I believe that it’s the most honest and effective way to share this time with you, and to honor Mom’s courageous battle.  I say none of this as a protective precursor to any news I’m about to share with you today.  It’s only mentioned as we step further into this journey.

Moving on to Mom’s health update.  First things first.  Tomorrow morning (Monday 10-17), Mom will undergo an outpatient procedure called a “Pleural Tap.”  This procedure will drain the build up of fluid in Mom’s right lung, and create a substantial increase in lung capacity.  This procedure is performed by inserting a needle between Mom’s ribs, into her right lung and allowing the fluid to drain.  This is the second time Mom has had a Pleural Tap, and while she rates the pain level as “tolerable”, this procedure will hopefully go a long way to counter any shortness of breath and discomfort associated with the fluid build up.  Prayers and positive energy are more than welcome at 9:30am tomorrow morning, for a quick and relatively painless procedure, and one that brings increased comfort and mobility to Mom.  An added blessing to this day which practically ENSURES success is that Monday is Grammie’s (Mom’s Mom) birthday!

Procedure aside, Mom’s time has been somewhat relaxed and quiet lately.  This past week has brought a bit of an increase in Mom’s sleeping and napping patterns, with a touch of dizzy wobbles, or as Mom would call it “Cattywhompus!”  The increase is a bit upsetting to her, but certainly something she’s trying to take in stride, conserving energy for the things she really wants to do.

The two S’s!  Scrapbooking and Scrabble!  Those two words have become a staple in this house and bring with them a load of quotes for the books, and memories for the future.  At a recent scrabble board skirmish with Jennifer, and on the verge of a devastating loss, Mom exclaimed “If I had my full faculties, I would have WHOOPED you!”  I've posted a couple recent pictures of BOTH S's for you to enjoy here.

Another classic quote came while Mom and Jennifer were watching Ricki Martin on the Oprah show.  The house was relatively quiet, with only the sounds of Senior Martin’s performance and the faint sound of his patented hip gyrations filling the house, when Mom clearly and emphatically broke the silence declaring “GOD, is he CUTE!”  I had no idea Mom was Livin La Vida Loca.

Ricki aside, Mom has been thrilled with some of the progress we’ve made on her scrap booking efforts.  The sorting and organizing brings a frequent sense of peace and accomplishment.  In fact, my dear friends Kim and Ben recently fueled that drive with a gift certificate to a Creative Memories store!  Mom had already started a list of necessary items needed to continue her passionate quest.

A long planned birthday celebration came last weekend from Mom’s dear friends Sylvia and Linda.  They surprised mom on Sunday with an evening out for dinner and a theatrical production of “Grease!”  Arriving with champagne in hand, Sylvia and Linda came to the house bearing beautiful flowers, a touching toast, and an emotional reading celebrating their bond as “Eternal Sisters.”  A night Mom will remember forever, spending such blessed time with such true and beloved friends.  Be sure to visit the "photos" section to witness the toast!

Looking forward, Mom is so excited to spending time this weekend with her Aunt Lilla!  Lilla is flying in from Guatemala to spend a weekend with Mom before heading up to Grammie and Papa’s house in Cayucos.  A totally unexpected gift, and one that Mom is so very thankful for!

On a sad note, Mom's sister Debbie lost a very dear friend last week.  Jim McInerney, a lifelong Hull family friend passed on last week after his own battle with Cancer.  It was news that deeply saddened Debbie, Mom, and the entire family and we pray that Jim's family finds comfort and peace during this time.

Much more to come soon, and once again, our literary thanks could never do justice to the deep and abiding gratitude we feel for your thoughts, prayers, notes, letters, words, love, and support.

Until next time….

Thursday, October 06, 2005

Greetings from Scrabble headquarters, and likely the location holding the world record of continuous Scrabble play.  If it’s not a state of ‘shock and awe’ in the front room, you need only peek into Mom’s room to witness the ‘level orange alert’ glow of electric Scrabble on her computer screen.  I think it’s safe to say that we’ve all caught the proverbial Scrabble bug, (is there such a thing?) and it’s gotten to a point where Mom doesn’t even have to be PLAYING for these skirmishes to break out.  Naturally, it’s all waged in love, and when mom slaps down a 42 point coup, we smile, grit our teeth, and tell her how much we love her.

Tons to share in this update, and I’ll finish it off with some detail of Mom’s recent birthday!  But first things first….. Mom’s health.

Mom is doing well.  She is finally acclimating to the recent hike in pain medications and in fact, was feeling really good this morning! It’s a true game of balance.  As Mom’s pain levels and tolerance to medications increase, the juggling act of increasing meds can make things difficult for her at times.  There are so many factors that weigh into any pain or discomfort that Mom feels, so we’ve been watching closely and working with Hospice to try and control or predict as much as possible.  Everything from the cancer itself, to the compromised kidney/ureter, to the cramping and constipation that the pain meds cause, etc.  It’s a veritable potpourri of pain sources, but Mom is in good hands with her Hospice Doctor (Dr. Mehren) and feels much more informed and at ease after each visit.

And while we’re on the subject…. Dr. Mehren made a visit on Monday to check up on Mom.  She adjusted some meds and had a great visit.  She commented on how happy impressed she is with Mom’s condition and state of health.  After examining Mom, Dr Mehren explained that one of the factors contributing to Mom’s shortness of breath is the increase of fluid in her right lung.  She gave Mom the option to have the fluid removed, which Mom wants to do.  SO, at some point next week it’s looking like Mom will have x-rays of her lungs taken and a procedure called a “pleural tap”, which she has had once before.  Dr. Mehren’s feeling was that Mom is doing so well with everything else, that there’s no reason for her to deal with any shortness of breath right now.  The removal of that fluid made mom feel MUCH better last time, and freed up a quite a bit of volume.  I’ll keep everyone updated on any plan of action.

Mom was remarking to me today that she feels an enormous mental relief in finding peace with what her body can’t do any longer.  She says that she realizes how fragile this time is, and that rather than fighting the increasing limits of her physical body, she finds serenity in the ironic gift that this disease has provided.  Time.  Time to focus solely on the juiciest bites of life, and be kind to a body whose failings could NEVER disguise the loving soul and beautiful spirit that inhabit it.  Plus, she added, “It allows me to take as many guilt free naps as I need!”

Scrap books!  The labor of love continues as we get more and more organized.  Mom has decided that the first album she wants to dedicate herself to is a Christmas album for her children.  Considering there are 5 of us, there’s going to be quite a bit of photo duplicating to do, but she is very excited about it.  She wants to create a comprehensive family Christmas album and duplicate it 5 times for each of us to have a copy.  It’s her Christmas wish, it’s her Christmas gift, and as such, it’s our October project!  I’ve posted a great shot of Jennifer sorting pictures in the “photo’s” section.

Speaking of Jennifer!  We were all so happy (Mom especially) to find out that Jennifer made arrangements in New York that will allow her to spend another month here with us!  Such a relief and so much fun to look forward to for Mom and all of us.  In fact, Mom was just mentioning how lucky she feels that there have been so many recent family events where we don’t have to make a phone call to a missing loved one.  We’re all here!

With that, it was the perfect stage on which to celebrate Mom’s 59^th Birthday!

It was a beautiful day indeed.  Truth be told, it was a beautiful FEW days.  The fun began when Mom’s parents (Grammie and Papa) came into town on Monday.  They were able to come down and spend 4 days with Mom and stay at a favorite hotel of theirs, only minutes from our house.  Mom spent a good deal of time visiting with them, going to the movies, lunches and dinners, etc.  Its time that she LOVES to spend with them, and comments often about how she wishes they lived next door.

The night before the big day, Mom spent a birthday celebration evening with Jennifer at Roy and Johns.  From the stories that returned with Mom and Jenny, it sees it was a night of great food, wonderful friends, plenty of laughs, warm birthday wishes, beautiful gifts and flowers, and of course, a late night card game!

Mom woke the next morning to her 59^th birthday.  Complete with wishes in practically every form possible, the exciting morning promised a great day.  The mail was full of colorful cards, the house was filled with amazing flowers, the doorbell was ringing with deliveries and friends bringing gifts and treats, Mom’s phone was ringing about every 30 minutes, the website guestbook entries started rolling in, and she had us here for birthday hugs and kisses.

Grammie and Papa came over in the late morning, picked mom up and spent the day together with Mom’s sister Debbie who drove in from Bakersfield .  The day was doubly fun because Mom and Debbie share the exact same birthday, exactly one year apart! (mom says it was her favorite birthday, getting a sister instead of a doll)

The big plan was to throw a dual birthday party at our house that evening, which is exactly what we did.  The birthday girls donned matching birthday sweatshirts and tiaras, and the house was literally filled with familiar family smiles. Mom’s grandchildren were there to give their Grammie homemade cards & birthday kisses, and to make their uncle Paul nervous about his carpet. The house was buzzing with laughter, stories, conversation, kids voices, and snapping cameras.  Dinner was only a prelude to the gigantic chocolate birthday cake that Grammie and Papa brought for their birthday daughters.  A hearty verse of “Happy Birthday”, a slice of cake, and on to gifts.  The thoughtful and poignant cards and gifts brought a few tears with their loving and generous sentiment.  They were a brief and touching reminder of the human experience that every person in that room was walking through.  The smiles prevailed and the evening wrapped with the hugs, kisses, and laughter that it began with. It was a beautiful day indeed.

With Mom’s birthday in hind sight, life in this house continues with funny and warm stories to recount about her 59^th birthday.

Don’t miss the photos!  Click here to check them out.

I was also fortunate enough to borrow a video camera from friends, so much of the day was captured on tape as well.

Thank you so very much to everyone who sent thoughts, well wishes, cards, gifts, guestbook entries, etc.  Mom was THRILLED to have them all.

(check out the new diLOADED moment on the website frontpage before you go)

More to come soon

Tuesday, September 27, 2005

Hi Everyone….

I hope this update meets you well.  I’ve just returned from 9 days out of town, so much of this update comes by proxy.  Jenny, Mom, and Christine have brought me up to speed with the stories and news I missed, and the last couple days have been awesome to spend with Mom again.

Unfortunately, this past week has not been as smooth as weeks previous for Mom.  She had a rough couple days where her pain level increased and crept out of her manageable zone.  (Before I continue, let me ease you with the news that everything is fine now)  When the pain gets out of control, Mom gets really uneasy.  She paces around a lot; she can’t get comfortable, can’t relax or concentrate, and usually gets sick to her stomach.  In this particular flare-up, the oral pain medications didn’t seem to take control, and were difficult for her to keep down.  Jennifer and Christine got hospice involved right away, and as a result, Mom’s doctor increased the dosage of her pain patch. 

(Does everyone know what the “pain patch” is?  The “pain patch” is a Duragesic Transdermal patch.  The actual medication is called Fentanyl, which is a narcotic that is an exceptionally potent analgesic.  The patch lasts about 72 hours and creates a baseline of pain management.  Any “break through” pain that Mom has is managed by her oral medications.  Periodically however, that baseline elevates and requires a higher pain patch dosage.  Last week was one of those times.  We’ve found that the patch, along with a few strips of tape, stays pretty secure on Mom’s upper chest, and we alternate sides when we change it every 3 days.)

Since the increase, which is the 3^rd to this point, things have gently fallen back to “normal”.  The patch increase always makes Mom a bit more tired for about 3 days until her body acclimates, but thankfully allows her to relax, rest, smile, and live peacefully.

Hospice also recently delivered an oxygen machine for Mom.  She hasn’t used it yet because it’s not particularly necessary at this point, but they say it will make mom feel much more energized and comfortable if she gets short of breath.

With this mini crisis behind us, these past few days have been much better for mom and we’ve had some really fun times.

SCRABBLE!  It’s a game that has always been one of Mom’s absolute favorites; it’s the only computer game you’ll find her spending hours playing; it’s the game who’s rules and regulations are as committed to Mom’s memory as the names of her children; it’s the game that masks Mom’s competitive lion as a literary pussycat, and if Mom ever used the “F” word, this would be the only arena to witness such a thing.  Scrabble my friends, has come to 624 La Veta.  Mom happens to be the proud owner of a Deluxe Scrabble set, complete with rotating board, and let’s just say IT’S ON.  Many valiant battles and deft trash talking have made Scrabble a recent household favorite. (I’ve even been known to play sound effects from my laptop to intimidate and befuddle opponents)

Between scrabble episodes, we’ve been pretty busy.  The girls spent a ton of time last week helping Mom sort pictures and scrapbook saves, which we organized into labeled boxes which Mom LOVES.  Mom’s had visits from a few friends and one from her sister Laura, and niece Julianne for a fun lunch at Mimi’s Café.  She loves the several deliveries of Baskin Robbins rainbow sherbet ice cream from anyone willing to make the run, and she was the incredibly proud mother at Jennifer’s movie premier last week!!

Sunday night Mom, Jason, Christine, Me and 4 of Moms 4 eldest grandbabies went to Holy Family’s annual Fiesta!  TONS of memories from years past following us as we walked around, played games, saw friends, ate Fiesta food, and although Mom didn’t win the 50/50 raffle, we still had a blast!

Mom’s nurse Becky was here this morning and I’m proud to report that Mom has gained 3 pounds!  A very positive marker at this stage, so let’s all raise a glass!

On the horizon, we’re all so excited to spend another birthday with Mom next week! On October 4^th, Mom will step into her 59th year!  It will surely be a celebration of her life, a thankful prayer for this time together, and a few laughs along the way.

I've posted a handful of new pictures in the photo section. Click here to check them out.

More to come soon!

Tuesday, September 13, 2005

Hi again everyone ! 

The past 11 days give plenty to cover, and amazingly enough, it’s all great news!  As I’ve mentioned in previous updates, we are so fortunate for this blessed gift of time and sustained health to share such special days with Mom.  The most recent pinnacle of those days came on Sunday in celebrating the 60^th wedding anniversary of Mom’s parents (Grammie and Papa).  An amazing day indeed, but I’ll get to that later.

Medically speaking, we are very much in the same place as last reported.  Mom’s nurse Becky made another visit today and things remain manageable.  As long as we keep Mom’s pain under control, she is content to ride this gifted wave as far as it will take her.

SO…… After a day or two of rest following Mom’s visit to San Jose , she was excited for the chance to spend another weekend with her sister Debbie, who came into town for a visit.  We hit the annual Orange Street Fair where Mom enjoyed some corn on the cob, zipped through the crowds of thousands, and browsed of the local craft booths.  We made one big lap around the Fair circle with my brother Jason, his daughters Mariah & Kaylee and Aunt Debbie.  Later on that Labor Day weekend, Mom and her sister Debbie went to another annual bash at Roy and John’s armed with a pot luck dish and a purse full of quarters for the card games that were bound to ensue.  Foolishly thinking I would find them asleep when I came home at 1:30am , I had to laugh when the door tipped open at almost 3:00am and the hushed chatter was only trumped by the sound of ice cream cups being pulled from the freezer and devoured.

Monday, September 5^th brought another birthday to Christine’s twin boys, Evan and Austin.  Grammie (Mom) was lovingly in attendance and we all spent the afternoon having lunch and cake together.  Click here to see a picture of Grammie (Mom) with the birthday boys!

The remainder of last week was spent getting rested for the late week and weekend events with Mom’s family.  Wednesday evening was spent visiting, laughing, and talking with Grammie (Mom’s Mom) at my house, cooking dinner together, and closely watching the Dodger game on TV for a glimpse of Papa (Mom’s Dad), Uncle Sandy , or Uncle Joe in the prime seats at Dodger stadium.  As luck would have it, the camera panned over first base, and the three of us jumped off the couch yelling “That’s Them! That’s Them!”

Thursday night was a very special and enjoyable evening of dinner at Sandy and Sue’s house with Mom, her sibs, and parents.  As stories go, there was plenty of laughter to be had, amazing food to be enjoyed, and the company of family that brought a palpable excitement for the weekend ahead.  From what I’ve heard, all attendees were treated to the highest level of personal service, thanks to the tireless efforts of Sandy and Sue’s three sons, Billy, Patrick, and Charlie.

Friday brought Jennifer!!  For the past 5 days, Jennifer (Mom’s baby #4) has been back in town from New York for another extended stay which will last through Mom’s birthday on October 4^th.  It’s really terrific to have her back, and her energy brings a jump to Mom’s step and a giggle worth recording.  The three of us spend time with little projects around the house, watching Big Brother (one of Mom’s favorite shows), going through and organizing the many boxes of memories, and mediating the heated battles on the scrabble board.

This of course, brings us to this past weekend.  In preparation for the big Anniversary celebration on Sunday, Mom, Jennifer and I worked to design candle centerpieces, and create a slide show for Grammie and Papa to commemorate their 60 years together.

The Anniversary celebration on Sunday can only be described as one of those precious and perfect family gatherings, where life and circumstance take pause to allow the needed laughter and love to dominate the day.  In short, it was nearly perfect.  All but one beloved cousin (Jen) were in attendance, making it the first time in several years that the day was shared with 3 (nearly) complete generations of family.  Mass was offered up by a beloved family friend and Priest, Father Pat Riley, and focused on the tremendous Joy and Life that has been created through Sandy and Helen’s (Grammie and Papa’s) 60 years together.  The evening was topped with amazing food (prepared by chef/cousin Debbie, Laura and Joe), two fully clothed adults (Jennifer and Erin) being pushed/pulled into the pool, two fully clothed children (Austin and Evan) managing to entirely chlorinate both of their outfits, Billy handily controlling the onslaught of wrestle prone cousins, a Grammie and Papa themed “Family Feud” game created and presented by the Ignoffo family, and an exceptionally touching presentation of poems from cousin Danny.  Plenty of laughter and tears to balance each other.  Truly a night to remember and one that Mom will always hold close to her heart.  She was so excited the morning of the celebration that we almost had to medicate her for the 30 minute drive to West Covina !  Even in the two days following the celebration, although Mom’s naps were longer and more frequent to “catch up” on her rest, she never comments about her increased siesta time without a vigorous declaration that “it was all SO worth it !!”

In preparation for Grammie and Papa’s slide show, we began the sizeable task of filtering through the enormous boxes of pictures and materials harvested by Mom through the years.  The seemingly simple task of fishing out pictures specific to the slide show turned into hours of “Oh man, look at this”, “Oh my gosh, remember this?”, “wow, check THIS out”, and “dude, you HAVE to see this one!”  A sea of photos and history at our fingertips.  The boxes that hold them bear the taped but bursting seams that almost appear to explode with memories.  These same boxes that have lifelessly followed Mom from house to house over the past 15 years have finally ripened, and overwhelm us with their abundance.  It seems that every picture, every report card, every book report, every drawing, every arts and crafts project, every article and clipping, every award, and every “my favorite things” list have come right back into our lives to warm us with their stories. Perfect timing, and one of Mom’s amazing gifts to us.

“I told you I wasn’t crazy for dragging that stuff around all these years,” she said.

All our love and thanks!  Much more to come…….

Friday, September 02, 2005

Firstly, my heartfelt apologies to those of you who frequent Mom’s website for such a lengthy gap since the last update.  I am however, thrilled to report that the lapse in communication does not come as a result of increased struggle.  In fact, it’s the exact opposite!

Mom is doing very well these days, and she has thankfully remained in a period of sustained health and well being.  It’s a gift of time, hope, freedom, and peace that continues to bless her, and ALL of us, as we walk this path together.

Mom’s hospice Doctor (Dr. Mehren) made another visit to the house on Monday.  It had been a little over a month since her last visit, which was about 2 weeks after Mom’s final chemo treatment.  She was elated to see the difference in Mom during this visit and made several comments to the effect of Mom looking and sounding so good.  She’s keeping weight on, managing the pain and medications, staying active with projects and things to look forward to, and resting well.   In fact, Dr Mehren even re-adjusted her evaluation of Mom’s life expectancy to increase her initial estimation!  She said “I LOVE to see people prove me wrong!”

Of course the great news was wonderful to hear, but I think it has gone a great distance to re-inject Mom’s morale and spirit!  It’s been really wonderful to see another hop in her step lately, and to hear her excitement for plans and events coming up.  I told her that she’ll be sending Dr. Mehren a Christmas and New Years card!!!

With all that said, I have to once again shift focus to all of you.  A daily ritual at the house is to read, re-read, comment on, and chat about all the amazing guestbook entries and cards that Mom receives.  They truly ARE mini miracles every single day, and I wish I could capture the smile on Mom’s face to receive them.  It’s working, and the Thanks belongs to you.  The online Guestbook is in TRIPLE DIGITS now!!

SO…. What’s been happening in Mom’s day to day life?  Plenty.  When she’s not busy organizing and going through boxes left from the move, Mom has had visits from various friends treating her to lunch or dinner, or just a good chat on the couch.  A good friend, Bea, from Mom’s days working at the Dermatology office treated her to an amazing facial, which Mom said was “outta sight!”   Mom likes to stay up and hang out with friends of mine who come to the house, and we even got her to join us in a game of Taboo one night.  Shelly brought some beautiful roses last week, Vicky makes regular house calls, Mom loved working on a puzzle from Roy , and Grammie & Papa keep Mom in fresh flowers.  Mom and I are pretty intense about our “Shamrock Watch 2005”, so not a day passes that we don’t peek into the shamrock bowl to see how our little guys are growing.

The house has felt empty for the last couple days because Mom was feeling well enough to take a flight up to San Jose to see her sister Mary Jo and her family, Pat, Joey, and Lisa.  Mom had a really fantastic trip spending time with the Ignoffo’s, and even got a chance to visit a dear and lifelong friend, Sr. Dorothy Clare.  Thankfully, there were no airport dramas or delays and the travel was painless.  In fact, as Mom was being wheel-chaired through the terminal this morning she exclaimed, “Boy, this is the ONLY way to travel!”

She’s back home now and doing great.  We’ve had a mellow day today in preparation for a big weekend.  Aunt Debbie is coming back into town for the long weekend to hang with Mom and accompany Mom to Roy and John’s annual Labor Day dinner and cards night!

Another bright beacon in the very near future which has mom smiling from ear to ear is the return of my sister Jennifer from New York .  Jenny has managed to find a sublet for her apartment and is coming out to stay through Mom’s birthday in October!

So much to be thankful for and so much to look forward to!  These are exactly those times that tragedy reminds us to appreciate, be thankful for, and never take for granted.  It is a gifted time for all of us.

Mom sends thanks and appreciation for everything to each of you!

Until next time……

Tuesday, August 16, 2005

Today was a day of day’s!!!

As luck would have it, one of my closest friends, Ron Rapp, is a pilot and flight instructor.  He and I have enjoyed countless flights to just about every airport in the surrounding areas, and Ron was kind enough to make possible a day of amazing firsts for Mom!  With a small amount of coaxing and a dose or two of Dilaudid, Mom was cautiously excited to make a day trip to Catalina Island .  It was not only her first time flying in a small private aircraft, but also her first time to Catalina ever!!

We woke early to a pre-flight meal of rye toast and apple sauce, packed medications and sunscreen, headed over to pick up my sister Christine, and drove off to meet Ron at the airport.  We boarded an AMAZING four seat airplane, complete with state of that art avionics and cup holders to boot, and set into the sky.  Mom’s trepidation was instantly secured when we pitched upward above the clouds and into the calm beauty of the sun-filled sky.  The 15 minute flight to Catalina was filled with “oooo’s, aaaahh’s, and wow’s” and we even managed to circle the port town of Avalon a couple times before landing safely.  We boarded the shuttle into town and were incredibly fortunate to see many of the roaming Buffalo on the island. (Incidentally, the Buffalo exist on Catalina only after being shipped in, and, “left behind” upon completion of filming of a 1924 movie on the island, and they have managed to survive and thrive on the island…… In fact, they have actually managed to find their way into the local menu as “buffalo burgers”…… pretty tasty, I must admit!)

Aside from the obvious experience of flying to Catalina and spending the day, the impetus for the trip was to meet up with Rick and Vicky Kisow who were vacationing on the Island for the week.  We did just that.  We met Rich and Vicky for a beautiful waterfront lunch, and then walked down to the beach to visit with several others in the Kisow clan.  We spent time walking through local shops here and there, buying hats and postcards, cooling down with ice cream cones on the boardwalk, a brief stroll to the Island casino, and then back to the airport shuttle.  It was a gorgeous and blessed day in every way.  Mom managed to push her energy levels, and truly enjoy EVERY BIT of the trip and the day.

We made our way back to the Island airport with Christine sitting shotgun in the shuttle to avoid her sensitive motion sickness, boarded the plane, and made the 15 minute quest back to the mainland.  Christine and Mom even managed to sneak into the airport gift shop and buy a “thank you” t-shirt for our capable pilot.

So it must be mentioned here, as it was mentioned before – during - and after our trip, that our deepest thanks and gratitude go to Ron.  He took the time, and covered the expense to fly us to Catalina for an experience that will forever mark this challenging path with unforgettable memories and a grace that can only be found beyond the clouds. 

SO!!  You want to see some pictures!??  Just click HERE!

Monday, August 15, 2005

Greetings all, and thank you for checking in on Mom.

I’m happy to say that Mom and I have very easily and very comfortably taken to living together, and we love it.  We spend time organizing things in her room, going through paperwork and boxes, sitting around chatting about anything and everything, loudly commenting on Dr Phil guests and topics (mom’s favorite show), carefully monitoring and tending to her health and pain management, and fun little house projects.  In fact, today we spent about 30 minutes planting Shamrock seeds in the hopes that a four leaf clover will visit us soon!  (Check out the photos section for some recent snaps by clicking here)  It pleases me beyond description to hear her say “Wow, it’s just so nice to live here” or “Paul, this is just great, I feel like a Queen”.  My siblings are here often to help out or to visit, and we all feel so comfortable having Mom here.  Jason and Erin make frequent visits to bring Mom some of her favorite treats like Eggs Benedict, soup from Mimi’s, fresh bread from Poul’s Bakery, etc.  Christine’s repeated visits to the house always come with meals, paperwork, general check up’s, and the occasional pedicure.  Jennifer’s physical absence is no absence at all, with her phone calls to check in and letters to mom, AND she’ll be making another trip out here on September 9^th to stay indefinitely!!

Mom’s health has been steady.  The past 2 weeks have thankfully been weeks of strange, but welcomed normalcy.  As long as Mom’s pain is managed and she gets enough rest, she has been able to do just about anything she’s wanted to do.  Her energy rises and falls, with frequent naps that recharge her batteries.  Her abdominal discomfort is mostly managed with medications, but probably the only thing that is a constant “bother” for her.

Among some of the highlights of Mom’s past couple weeks have been a four day visit to Cayucos with Laura and Joe to see her folks.  They had a “glorious” time together, filled with walks on the pier, evening poker, ice cream in Cambria , and an amazing trip to the Monterey Bay Aquarium where Mary Jo and her kids met with them for the day. Grammie (Mom’s mother Helen) even called me to recant their time together and considered it to be the best time they’ve spent in Cayucos relaxing and enjoying a wonderful trip.  Mom also had a recent visit from a dear family friend and Catholic priest, Father John Urell.  He was kind enough to come over, spend time chatting and catching up with Mom, and a beautiful time of prayer with the 3 of us where he anointed mom with a blessing of oil for the sick.

A funny reaction that Fr. John, and many others have had in first seeing Mom has been “WOW, I didn’t expect to see you looking so good!”  I’m sure that the majority of this can be attributed to Mom’s spirit and determination, but it’s always a welcome greeting.

Every day, Mom manages to make her way through her boxes of paperwork and particulars, bringing her closer and closer to the exciting prospect of tackling her scrapbook project.  It’s so fantastic to see her move steadily towards the work she truly wants to create with her picture and memory scrapbooks.  It’s been her life’s goal, and a goal whose horizon is upon her.  It’s awesome to see.

Mom’s friend Kathy continues to visit every Mon/Wed/Fri to administer communion to Mom, and Vicky Kisow is present daily with a phone call or visit that invariably lifts Mom’s spirits.  Mom's brother Sandy came over with lunch the other day, and true to form, he kept us laughing the whole time with his hilarious stories!

Mom has managed a couple visits to Roy and John’s house to enjoy a student recital or just some quality time with them in her familiar stomping grounds.

In the midst of all the expected sadness of this journey, there have been a number of blessings which have managed to bring needed relief and a deep sense of warmth to Mom.  The most evident of those blessings has been the overwhelming outpouring from all of you!  The messages posted to Mom’s Guestbook, and the cards/letters received here to the house have been remarkable, and a clear testament to Mom’s beauty.  We actually get a good laugh every day when the mail is delivered because Mom is DOMINATING the daily take!  It’s almost refreshing to get a BILL with my name on it!  I wouldn’t have it any other way.

So…. Yesterday, Mom and I managed to recover her large whicker tray from the island of boxes in my garage, which Mom wanted to use to display all the cards/letters she has received during her illness.  We brought the tray into the living room, grabbed the enormous stack of cards from her room, and began laying them out in the tray. (Reading many of them again along the way)  Then, the most amazing thing happened.  As we were laying the cards out in the tray, we both started smiling, we started giggling a bit, and we instantly felt overwhelmingly happy and excited!  Mom describes it as “a feeling and experience that is as REAL as any feeling I have ever had” and “truly feeling as though I am PART of all the sentiment, thought, and prayer” coming from all of you through these cards and Guestbook entries.  It’s a gift for which our entire family will forever be thankful to each of you.

Time moves forward, and Mom feels the consuming blanket of love and support that has been so thoughtfully woven in your expressions.

Tuesday August 2, 2005

Hello Everyone! Once again, there is so much to say.  Firstly however, I must collectively thank you for all of your letters, emails, and messages on Mom’s guestbook.  It is truly the fuel that brings both smiles and comfort to Mom in these times, and brings her so much peace in the sense of community that has been created.  So, once again, thank you!

Since Mom’s choice to terminate Chemotherapy, we’ve been able to truly enjoy so many pieces of Mom that were muted or absent as a result of the treatment.  She is equally joyful of her sustained alertness and ability to pursue so many things that have been sidelined during treatment.  In fact, she was THRILLED to be able to spend an entire evening with her sister Debbie, her daughter Jennifer, and several other friends, playing cards at Roy and John’s house this past weekend.  A welcome change indeed!  We finally received the results of her most recent “tumor markers” last week, as well.  These markers are an indication of whether or not the chemo was having a positive effect on the growth, speed, and amount of cancer.  In the doctors words “there is not enough change in the markers to consider the treatment effective”, which in short, means the chemo was not working for Mom.  Ultimately, it is a validation in Mom’s choice to discontinue treatment, but in some ways a painful validation.  In light of this information, and for many other reasons, the choice for QUALITY of life has proven to be difficult but the most treasured choice.

The priority as far as healthcare is concerned, is keeping mom out of pain as much as possible.  We’ve been really fortunate to have such wonderful hospice Doctors and Nurses to assist in this.  We’ve been able to “bench” many of the medications needed post-chemo, and deal mainly with pain and anxiety management, sprinkled with a couple additional and unpredictable symptoms.  Mom’s right kidney is significantly obstructed, but her left seems to be handling the entire job smashingly.  She has a managed level of abdominal discomfort which the medication keeps under control, and still requires several naps throughout the day.  Mom’s personal priorities remain; to spend time working on her Creative Memories scrap booking, and of course to visit have fun with friends and family.  Our hope is that her new surroundings will aid in BOTH of those efforts!

So! It is official.  Mom has a change of address. (Address details below)  On Sunday, we moved Mom less than a mile away, into my house.  She has her own bedroom, bathroom, and the distinct authority to “boss me around” which she does very sparingly!  The move was made seamless and incredibly efficient with the help of many.  Mom’s sister Debbie spent all of last week in town with Mom, helping organize, pack, and label everything in Mom’s house.  It was a treasured time for both I’m certain, and an equally valuable time to easily and respectfully complete this move.  It was a blessing beyond description to have Aunt Debbie here to walk Mom through this move, and be available to each of us individually.  Along with the packing came some fun times too!  Mom, Aunt Debbie, and Jennifer enjoyed a few movies throughout the week and a visit to the Whale exhibit at the Long Beach Aquarium.  They were fed and visited during the “working hours” by many of us including Vicky Kisow, who in addition to the food and loving visits, managed to actually clean Mom’s vacant apartment after the move!  (I should mention that Mom’s phone number has been transferred to her room in my house and will remain the same.)

Christine, Gary and the boys came home from their camping trip just in time to celebrate two family birthdays with Mom on Monday night.  Christine and Jason (Mom’s baby’s number’s 1 and 3 chronologically speaking) have birthdays this week, and it was wonderful to see Mom truly enjoying the celebration.  We all got a chance to look through the proofs of our recent family portraits and I’m sure we’ll choose a few “keepers” soon.  Once that happens, I will post a couple of them here on the site.

On a sad note.  Jennifer (Mom’s baby number 4) left town this morning to head back to her home in New York after a month long visit.  She plans a return trip soon, but we’re all missing her company in a big way.  Her time here was another miracle to be acknowledged and so very thankful for!

In keeping with Dr. Mehren’s (Mom’s hospice Doctor’s) advice, the opportunity to “Seize the day” has been at the top of Mom’s priority list.  As such, Mom left town this morning with her sister Laura and my Uncle Joe to visit Mom’s parents in Cayucos for a few days.  I’m sure they will have a ball, and it is yet another blessing that Laura and Joe have created the opportunity to do these things with and for Mom. Grammie and Papa are SO excited to have them!

In closing, I’ll say that we’re in a bit of an “acclimation” period right now.  Mom moving to my house, Jennifer back home in NY, Aunt Debbie back home in Bakersfield, Mom’s termination of chemo, etc.  Your thoughts, prayers, and messages continue to warm and uplift Mom, so keep them coming!

Monday, July 25, 2005

So much to say!  I'll get right into it.

Mom's Guestbook has been completed! You can find the link on her websites homepage. We've already had some really touching notes written, and Mom LOVES to read them.  It truly goes a long way to making her feel in touch with each of you, so feel free to leave a message any time.

On to bigger news.  We've spent the past week having some challenging but necessary chats with Mom about a number of different matters.  As a result, Mom has made a few major decisions. The first of these, is that Mom will be moving into my house by August 1st.  This choice brings a huge amount of relief on all parts.  Mom is thrilled to finally have air conditioning, to free herself from the financial and medical burdens of living alone, and still stay right here in Orange.  Naturally, we are very happy to keep her close, and feel honored to care for her during this time.  Our hope is that this move will alleviate so many concerns and worries for Mom, and allow her to whole heartedly take advantage of her time and energy to do the things that she LOVES and WANTS to do!  Admittedly, it will be strange to hear Mom telling me to "take out the trash" again after so many years, but oddly enough, I find it refreshing!  It should be said that Christine spent the better part of last week on the phone and in appointments handling just about EVERYTHING related to the "business" of Mom's illness.  A GIANT relief to Mom, and an invaluable chore for all of us.  All of this of course, while shopping, packing, and preparing to go camping with her family!

The second big decision Mom made this week was that she did not want to continue with Chemotherapy.  It's a decision that our entire family, and Mom's hospice Doctor, wholly understand and support.  Candidly speaking, the second round of Chemo really knocked the hell out of her, the result of which is about 9 days (post chemo) when her quality of life is at zero.  It's a time of enormous frustration and sadness for her because she literally cant "do" anything.  Conversations, friend visits, projects, scab booking, writing letters, reading, and even watching a movie become activities that are impossible for her to do.  (and aside from feeling completely miserable physically)  We've been told by Mom's hospice Doctor that this is a very strong decision that she feels is the correct one.  Mom's cancer is advanced to a point where her Quality of Life is the dominant concern.  We will still get results of her recent tumor markers in a few days, but short of them returning with a hugely significant decline, the choice to discontinue chemo will remain.

SO, after August 1st, Mom's new address will be 624 E. La Veta Ave,Orange ,CA ,92866.

With that said..... Mom is doing really well.  The second wave of chemo has "left the building" and she is slowly but surely getting her strength and clarity back.  She is so excited to now be able to stay awake for several hours at a time and finally have the energy to feel more like herself again.  It's really great to see.  We had a slight setback yesterday when mom's abdominal pain flared up, sending us to the ER for 11 hours!  But, the pain is back in control and we were fortunate enough to complete our first practical education in something they call a "Pain Crisis".  Apparently this is not an uncommon thing to happen in situations like Mom's, but now we know exactly how to handle it without spending the day in a hospital room.  Thankfully Jennifer was there, so the three of us spent the day/eve talking, laughing, and waiting.  It was also the inspiration behind this weeks "diLOADED" moment of the week!

Hospice continues to be the golden gift.  Two visits from the nurse last week, "tuck in" phone calls, and a visit from the Doctor today puts ALL of our minds at ease, and makes Mom feel SO taken care of.

We had family pictures taken last week!  For the first time in YEARS, Christine planned an outside photo shoot for the entire family (except Joe who is stationed in Japan at the moment).  Mom was in good form, the grandkids didn't get grass stains on their white shirts, there was plenty of stern direction but no one got a "time out", Dad decided to be different and wore an OFF-white shirt, and we resorted to fart jokes to get everyone smiling for the camera... so I guess you can say... things were exactly the way they used to be !!

Mom's time these past couple days has been spent "putzing around" (as she loves to call it), getting a visit and catholic holy communion from her friend Kathy Smith every mon/wed/fri, organizing her scrap booking, spending time with Jennifer, an occasional movie with my Aunt Laura and Uncle Joe, and coming to my house to rest in the air-conditioning during these really hot days.  Jennifer is with her most of the time and it cracks me (and Jennifer) up to see Mom wiggle and squirm while Jennifer massages Mom's ticklish feet.

Christine, Gary and all their kids are out of town camping this week, which is a great chance for them to relax and spend some good family time.  Mom's sister Debbie is coming into town tonight to spend the week with Mom, and help her organize and pack for the move.  PERFECT timing!

This week is all about the details of moving for us.  I want to make it s easy and non-rushed as possible, so we're going to do it piece by piece.  In her mind, Mom has already configured her room exactly the way she wants it, taking into consideration everything from her scrapbook tables, to the placement of the bed in order to see outside, to the position of the TV in relation to the glare of the sun !!  I am DEFINITELY my mother's son !

I'll end this Update by sharing something Dr. Mehren (Mom's hospice Doctor) said in her conversations with Mom today.  "Do everything you love, and everything you want to do NOW." "Don't wait for another chance, because you have it here and now."  She didn't say it in a tragic sense, but in a precious and encouraging one.  In relation to Mom's illness, those simple words speak volumes. But I'm sure they are words that Mom wishes we could all hear.

Much more to come, and of course, Mom sends smiles and love to all of you !

Saturday, July 16, 2005

Hello again to all, and a HUGE thank you for all the positive remarks sent to me about the website.  It makes all of us (and Mom of course) very happy to know it!  I'm working on including a "message board" where you will all be able to submit personal messages to mom which will automatically post to the site.  More later.

Mom is back home!  After 4 days in consenting "captivity" here at my house, mom is finally back home.  The expected effects of the chemotherapy are still present, so mom is still heavily medicated for nausea, pain, and a general uneasy restlessness.  Additionally however, we've seen a couple different side effect in this 2nd round, which are common, but new to us.  The key for her right now is to rest, and drink tons of water in order to flush the remaining chemo from her body.  Its a bit of a frustration for her to be so inactive, but we are spending a lot of time at her house helping out with little projects that she is a bit too tired to handle at the moment.  In fact, Mom wont let any of us leave her house until we "do some of her puzzle".  She recently set up a table and puzzle which she is determined to finish to see what pieces are missing!  I'll be sure to post a picture of the finished product upon completion.....

We have been in contact with Mom's Urologist again recently.  A CAT scan taken last week confirmed an obstruction in her renal system (specifically her Ureter) which we've been aware of for some time now.  To this point it's been something we are told is not significant considering Mom shows no symptoms of blockage.  This IS however, the area of her body that mom is constantly "pawing" at, so its worth investigating in our opinion. In any case, the Urologist is going to view all the scans, and I'm sure we will hear something shortly.

Hospice has been our saving grace once again.  Calling in medications, coming to check on Mom, answering all of our questions at any hour, and the most recent topper, "Tuck In's".  On Tuesday's, Wednesdays, and Thursday's, Mom will get a "Tuck In" phone call to see how she's feeling!  Amazing.  It's also important to mention that two of Mom's dearest friends, (Roy and John) who live right next to her, check on her every night around 2:00am.  This has not only been a convenience for us, but also gives us a strong piece of mind during the nights that Mom is being taken care of, and by two people she loves dearly, no less.

Party weekend for mom.  I know it sounds absurd, considering all the information above, but Mom has a weekend packed with family get-togethers that Mom is so excited to be part of.  The first is today at my Aunt Laura and Uncle Joe's house to celebrate my cousin Julianne's return from the Peace Corps and her last 3 birthdays!  The second is on Sunday when we will celebrate my sister Jennifer's and my Dad's Birthdays together.  Mom is resolute about making a Cameo appearance at the very least.

Our hope is that Mom makes a steady incline this week as the chemo works out of her system, and the she regains a good deal of energy and sustained activity.  We've got family portraits coming up this week, and I'm SURE mom is excited about shopping for a suitable outfit!

All of your continued thoughts and prayers are so appreciated.  Please keep checking back for more updates! 

Miriam/Mom send all her love !

Wednesday, July 13, 2005

As I (Paul) sit and write, I can hear my sister Jennifer laughing in the front room while she attempts to give mom a massage.  I think I will let girls be girls, and stay in here to write for the time being.

So…. Yesterday, Mom completed her second day of the second wave of Chemotherapy.  From a care taking point of view, things have been MUCH more manageable than in the first wave.  We are much better versed these days in the art and science of drug management.  I think we’ll all have an amazing head start on Pharmaceutical studies if the inclination arises.  Pain and Anti-Nausea medications are administered with more ease and anticipation than in the past.  Mom has agreed to stay with me (Paul) during the acute days of treatment so that we can provide the necessary round-the-clock care.  From a patient point of view, Mom is holding strong and toughing it out.  The side effects have been manageable but certainly present.  We are keeping a close eye on her at all times and trying to keep her comfort level as high as possible.  She is very tired and “sleeps” much of the time.

The hospice nurse and hospice social worker came to my house today to check on Mom’s condition, order new medications, and make certain that things are in control.  They are both very sweet and capable people, and hospice has truly become the most cherished blessing imaginable during this time. 

As many of you already know, my sister Jennifer is in town from New York for the entire month of July.  Having Jenny here has made Mom happy beyond words, and has provided another able set of hands to take good care of her.  Such a blessing!

Jenny and I installed shelves and new lights in Mom’s house the other day to make it easier for her to work on her photo albums. (Creative Memories)  This effort is her PRIMARY goal and focus, and we want to do everything we can to help her achieve it.  It brings Mom SO much joy to create these albums, and it gives her great focus and drive, which is wonderful to see.

Communication with family and friends is also of paramount importance to Mom right now.  In fact, that is one of the reasons we have created this website.  Her desire to remain in close contact with everyone is only trumped by her level of energy during this time.  Please know however, that her thoughts and intentions are focused on remaining in close touch with each of you.  She LOVES to receive letters and notes via standard mail.  If you are so inclined, please feel free to write to her and send letters to either address below.

Mom – 183 N. Waverly, Apartment # 3 , Orange , CA , 92866

OR

Paul – C/O Miriam – 624 E. La Veta Ave , Orange , CA , 92866

Eventual plans include Mom moving into my house permanently, although no solid date has been set.  As long as her health is not in jeopardy and finances permit, she will remain living in her house on Waverly.  We have been very concerned about respecting Mom’s wishes to remain independent.  As such, a schedule of constant In-house care is in effect until situations dictate otherwise.  Mom’s heart is so happy in her own space.  She still loves to “putz” around and tend to projects that she finally has the time for.  The