Again, thanks...

Thank you to all of you who travelled this journey with me. My mom has been memorialized, and now the healing can begin. You have all been so kind to me. Hugs and love to you all. If you need to contact me in the future, please feel free. I love to hear stories about my mom from dear friends. You can also contact me by email at bepelfrey at gmail dot com (form into email address).

Hugs and love to you all!

Becky

Kathy's Memorial Service

My mother's Memorial service will be held at 7:00pm, Monday,
November 21st at Lucas Funeral Home, 700 Wall Street, Grapevine, TX.

The Dance

To all my sweet friends who have joined me on this journey; my sweet mother passed away peacefully in her sleep, holding hands with my sister, niece and me at 6:37 pm this evening.  We are all at peace now, and she is no longer in pain.

Coincidentally, Mom died on November 17th, the same date that she lost her own mother, 24 years ago.

The Dance, by Garth Brooks
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance

Her time is near, my friends. We are at her bedside, and telling her it's time to go, when shes ready.

Changes

Our beautiful mom

 We took these pictures tonight.  They will be awesome memories and reminders of how much we loved each other. 

Mom and Sue

Mom and m

Today was a very bizarre day.  Mom woke up this morning thinking that she was on the phone with "the mortgage company, trying to close on her house."  Then she asked me why "the Shitzu rescue people were here" [she doesn't have a Shitzu], and finally, she said she just had a vivid dream that the man next door had "barged into her house, got rid of all of her flowers, and then told her that they were going camping so that she could have a new life."  The hospice nurse told us that some of the hallucinations are from her morphine, and some are from the disease itself.  Either way, she's showing all the classic signs of "end of life."  She is dreaming about people she's known who have passed over, and she's very calm about going.  She has said more than once that she is ready now, and wants to be out of pain.  We have told her over and over that when she is ready, we are ready, too.  Luckily, hospice gave us a pamphlet, and it's helping us immensely in knowing the signs of end-of-life.

We are just hugging and loving on her, and enjoying being together, the three of us.

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Good day!

Well, semi-false alarm. Mom is bright eyed and bushy tailed today. Already ordering me around at 7:30 am! Lol. I love my mommy. And sleep. Wait? What's sleep? ;)

Mom is seeming very disoriented today. I'm sorry to say, that I don't think it's going to be much longer. It's hard for me to say this out loud, but I see the decline. I am so glad my sister and I are here this week. Thank you all for your support and love, always. ♥

My sister Sue and Aunt are with my mom again tonight, and my sweet niece Brittany Hagen flew in from Florida, too! I'm home with my family for one more night, and then we're all going to meet at Mom's tomorrow. Mom seems really happy to have her family around. She's even eating pizza! ;) My sister is getting to stay all next week with Mom and me. Yay

Buddy

I had posted that my mom needed a home for her doggie, but as soon as I posted it, her sweet nurse's aid said she wanted him. We're so excited that Buddy has a good home. ♥ My sister Sue and my aunt are here, too. Sue's going to stay a few days (instead of just the weekend) and that's wonderful.

UPDATE 11/15/11"
Buddy is now "truck driver!" He's been traveling with the nurse's husband all over Texas. He loves his new "daddy!"

Exhausted beyond belief. Aunt and Sister are in town to help. Feel like I have a newborn again. Love my mom with all my heart and soul. zzzzzzz

Inspiration

Sue, Mom and Me in 1995

My mom spent 25 years as a travel agent, and retired in 2010. She was fortunate to be the travel agent for the Texas Rangers and the Dallas Mavericks. After George Bush sold his part of the Rangers and the ownership changed, the Dallas Mavericks became her biggest client. Toward the end of her career, the Mavs used their own planes, so she mostly did their ground travel. Over the years, she has planned vacations for many of the Rangers and Mavs players and their families. And Juan Gonzalez's...."sisters"....;). Today she received 8 cards in the mail from the Mavs organization. What a beautiful smile it brought to her face. I'm so proud of my mom, and how many people love her. ♥

Day 5

Day 5 with Mom was great. She got a hospital bed and a walker, and things seem much easier for her. She ate some chicken and guess what? GODIVA CHOCOLATE! (her fave). The hospice nurse said that unfortunately, or I guess fortunately, Mom does not qualify for 24 hr nursing care, so as of today, I became "Becky Pelfrey, honorary RN!" Pretty good considering that the only classes I got D's in in college were the "-ology" classes. Anyway, we're hoping to find some respite care for me for the weekends. I need to be home with the kiddos and my wonderful husband, but Mom can't be alone. As she gets worse, an actual RN can stay with her on weekends, but at this moment, my main purpose is to be with her full-time, since she can't function alone. I wouldn't have it any other way. :)

Just found out that my friend Michelle Buttitta lost her sweet mother last night to the same cancer that my mom is battling, and another friend and former student, Lauren Siska lost her mother last week to cancer. I have no words to describe how angry I am that so many of us are losing our moms too soon. How can people say there is a good reason?

I wrote this post on Facebook today. I so adore my Facebook friends.

"Every single comment that every single one of you makes to me means the world to me. You all have been my strength, and will continue to be, I'm sure. Some people don't understand the magic of Facebook. I do. I SO do. ♥"

Day 4

Today was SUCH a monumental day for Mom. She was able to sit up by herself, then ate some chicken broth! That was the first sustenance-type thing she's had since last week. THEN for dinner, she ate part of a chicken breast! That's the first SOLID food she's had for weeks. I am so pleased. Small steps can be huge. Thank you for all your love, again. ♥

With Every Goodbye

I found this poem on a plaque on Mom's wall. It touches me. And has a lot of meanings.

Learn With Every Goodbye

After a while, you learn the subtle difference
between holding a hand and chaining a soul,
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises,
And you begin to accept your defeats
With the grace of a woman,
not the grief of a child,
And learn to build all your roads on today
Because tomorrow’s ground is too uncertain for plans,
And futures have a way of falling down in mid-flight
And after a while, you learn that even sunshine burns if you get too much.
So you plant your own garden
and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure…
That you really are strong
And you really do have worth
And you learn
and learn…
With every goodbye, you learn

– Veronica A Shoffstall 

Day 3

Day three with Mom. She seems so much stronger today, but yet less and less independent. She's not able to get out of bed by herself, so I'm doing a lot of lifting, but it's still all worth it. Tomorrow I will be able to talk to the hospice nurse about Mom's needs (hospital bed, walker, etc). It's amazing to me how fast this is going. Reminds me of a song from the 70s..."Day by Day." sigh

Day 2

Day 2 with Mommy. She's been able to keep a lot of her meds down now, so that's great. She still hasn't eaten, but the nurses are not sure she will. She has told me over and over what a relief it is for me to be here. That makes me feel so good. She's saying she's ready for a hospital bed, and I definitely think she needs a cane or walker.  I'm be talking to her nurse about that on Monday.  For the time being, I'll be staying out here through Wednesday, but longer if needed.  This is short term for the most important time of my and my mom's life. 

Time for Me

Well, it looks like Mom is going to need full-time care. The hospice nurse wants me to stay out here this weekend and document how Mom is doing. She hasn't eaten in a week and is now nauseated and can't keep pain meds down. She sleeps a lot. I feel good being here.

Plateaus

Talked to Mom's hospice nurse today. She says my mom has plateaued. Not better. Not worse. Nurse is focusing on Mom's pain management and weakness. The nurse does not feel she is near passing away any time soon. She said Mom's pain level is 5-7. She's trying to get it down to 3-4. She has upped pain med, pain patch, etc. An aide is starting on Wednesdays to help with housework. 

It's nice to be able to exhale a bit.  

Denial

Things have changed.  Now I think Mom is going through a denial/rebellion phase.  Sue flew in because she and Mom had made arrangements  to sit with an attorney and make plans for Mom's finances.  Sue had been calling people, getting information, and Mom was ok with everything.  Sue told me today that Mom didn't make an appointment with an attorney until this Tuesday, and they can't even get her in until next week.  Sue will be gone.  Then she decided that she just wants to make a will, and "everything will be handled in the will."   I really understand what's happening.  She just doesn't want to acknowledge that it's nearing the end.  She's got a (excuse my word) "fuck it" attitude.  I probably would have that too. 

She's taking 3 kinds of pain relievers now.  She's still up and mobile, mostly, but she has a lot more "bad" days than good days.  Her nurse comes twice a week, but that's all the hospice is providing.  I'm not very happy with them, either, at this moment.  They promised us lots of stuff that's not happening.  I SO need to take care of this stuff.  I.Just.Don't.Have.Time.  

I know I sound so fatalistic, but I'm just..at a loss.  I'm losing my mom, my husband and I can't pay our bills, even if I DO work all week.  If I miss a day, my check is less than when I was a teenager.  I can't change jobs, I can't work another jobs, and the list of what's wrong with me physically is getting worse and worse.  My kids need to go to the dentist, my husband needs expensive medicine...it just seems so hopeless.  I can't even imagine how things could get better.  

In other news, Steve Jobs died yesterday.  He had pancreatic cancer.  Very similar to Mom's cancer.  I hate cancer.  Life itself isn't at the top of my list right now, either. 

No News is Good News, right?

First of all, for the most part, assume that no news is good news.  It's so sad that I'm  not posting good updates, and I should be thankful for every GOOD moment there is, but in the long run, I'd rather just go with the "status quo" sometimes, and not have to stop and write about it.

Well, and then there's the other thing.  One night, just for kicks, I thought I'd read "at" this little book that the hospice people gave me called "When It's Time."  I knew it was about death approaching, and I'm pretty certain it's going to be a little while for Mom, so I just thought I'd read a few pages.  All of a sudden I got this panic/anxiety attack, and nearly collapsed.  WHERE did THAT come from?  I was so frustrated that I couldn't control myself from crying, sobbing, bargaining.  It was weird...it was like all of a sudden I was thinking about trying more and more things to make sure there wasn't more we could do.  Bill finally had to calm me down, and that's the last time I've done that!!  However, now, every time I even let myself "go there," [think about her dying], I panic again.

I guess I didn't mention that everything, for the most part, is going ok with her hospice.  She's definitely getting the help she needs.  I'm not really pleased with the change in staff and things so much, and I really wish we had someone to talk to other than a reverend.  I know that he's probably a great guy, and yada yada yada...I'd just prefer a licensed psychologist or something.  I'll have to find one on my own. Or not.

But all and all, my mom is doing well.  She goes to the store by herself, and so far is feeling better.  It's like she's back to her old self.  Yet she's not.

I appreciate everyone who reads this and offers support.  I kinda suck at responding, and that's rude of me.  Just know that I love you all for caring. 

Hospice

We met with the intake lady and nurse from Heart to Heart Hospice on Saturday at Mom's house.  I was very pleased with the care they provided to Mom, and she seemed to feel very good to have someone actually listen to what she had to say.  They had time for her, and that's what she's been wanting from her physicians all along.  I told Bill that I really wish that everyone could have a team of nurses around them when they are diagnosed with a serious illness.  This just seems to be the ideal situation for my mom.  They even identified the source of some of her pain from a surgery a long time ago. 

They gave me a booklet called "When Death is Near."  They told me not to even read it until I really needed to.  Of course stubborn me thought I could handle a page or two last night before I went to sleep.  I read one page, and had an anxiety attack.  I know she's not going to live forever. I know.  But when I read the details of actual death...no way.   I told Bill to shred the book (which we didn't), and I almost vomited.  Wow.  

So the way we left it, Mom will have the nurse twice a week, and  nurse's aid three times a week.  She requested a hot young male nurse, but they didn't seem to have one.  ;)  Love my mom. 

Updates and Such

I've been really bad about updating.  I need to make sure I'm writing this down, because some day I'll want to, or need to, read it. 

I'll try to go back chronologically, but I may get our of order.  Sue me.  ;)

After the chemo made her sick, Mom and I went back to see Dr. Gill's physician assistant to discuss hospice.  It was a very emotional day for me.  I'm not even really sure why.  All I know is that I go from one extreme to another.  First I'll be ole Happy Becky...just feeling normal. Then I get panicky, thinking that I need to be doing MORE for mom, even if it's just mentally doing things for her.  Like, I need to think about her daily because soon I won't be able to think in the present-tense about her.  Then I just get overwhelmed with sadness, but I don't cry much.  I still am not sure how cathartic it would be to cry.  Shedding a tear here and there is acceptable, but walking around boo-hooing, being sensitive to people mentioning dying at all is just not me.  And it probably never will be.  I didn't cry a lot when Dad died (ironically 10 years ago this December).   But anyway, back to that day.  I posted this on my Facebook that day:

 I don't wanna arrange hospice. I want to crawl in a hole and cry. Financial issues, stressed at work...make it stop, ok?

I got 31 responses to that post.   People surprise me.  It's like we all want to comfort and help each other.  I'm just speechless.  It made me feel really really good, but also really really sad.  I like attention, but not this attention.  Ah, I digress about MYSELF again. 

So we left that day, and I didn't do much about hospice.  Finally over that weekend, I found some places I really liked.  Lance's friend Colton's family owns a hospice called "Heart to Heart Hospice."  I spoke to the director, and just absolutely trusted her with my mom.  I looked into a few others (and thanks to my friends Vanessa and Sarah for giving me some excellent names), as well as to my friend Tiffany who suggested I care for my mom.  I offered that to my mom, but she knows deep down that I'm no nurse, and she wants to enjoy her time with me...not me to see her at her worst (however I anticipate seeing her at her worst one day.)  Anyway, we haven't nailed down one for sure yet, but we are meeting with a few this weekend.  I'm very comfortable with hospice.  As a matter of fact, I wish we'd get started so that Mom can have some help.  I just want to make sure her basic needs are being met.  I can run errands, etc, but I kind of think she needs someone to help her know what to do for pain, and how to deal with feelings.  The biggest thing she has to accept is that we will be find without her.  Of course that's not to say we will be GOOD without her, but we will survive.  She's so worried about being a burden to us.  I can't imagine a time EVER when she failed me when I needed her for support.  I'm sure I was a burden to her most of my adult life.  I feel good doing...what I'm supposed to do. 

Aunt Elaine is getting to Mom.  She is really making my mom feel worse, and won't listen when my mom tells her to back off.  I have thought about butting in, but I don't need to right now.  I tell ya, though, that after Mom dies, my aunt and I might have some words.  I KNOW she feels helpless, and yadda yadda yadda, but she constantly pushes my mom, and  sends her endless books/articles/researches on her cancer.  Mom said one day that she wishes Aunt Elaine would just treat her like her sister, not her "sister with cancer."  Ugh. 

I think I'll stop this post for tonight.  My neck muscles are cramping, which I've now dubbed my "Mom nerves."  I went to the doctor last Friday and got some muscle relaxers and stuff.  Flexeril is like candy to me...doesn't do a thing. 

Michael brought Serenity over to see us last Thursday.  We kept her for a few hours, and it was SO much fun.  She's adorable and really took my mind off of things.  Like I said on Facebook, she was a great diversion from things.  The Circle of Life, so to speak. 

Chemo = Negative

First of all, I've moved this blog over to a new address :http://beckysmom.blogspot.com.  It was easier having it under another email/web address. 

It's been a week since I last posted.  It's been a pretty uneventful week, all in all.  Mom had her first chemo on Wednesday.  She tolerated it really well, and met some people who were going through what she was going through.  It all seemed pretty promising.

I called her Thursday, and she seemed a little tired, but still really upbeat.  Friday was the same, but she said she kind of hurt.  Still all seemed well.

I didn't call her Saturday because we have been running around school shopping with the kids all weekend.  Sue called me today and asked if I talked to Mom.  It turns out that she has been deathly ill and sore for the last 2 days, and she has decided that she does not want chemo any more.  She was afraid that we would all be disappointed in her.  She forgets that we were all on her side in the first place.  Mom can do whatever she wants.  I'm so proud of her for getting this far, and still being strong. I really don't think anything will be different.  She was enjoying eating and getting stronger.  Hopefully she'll feel better this week, and keep plugging on.

I have a lot of emotions, but tonight all I can focus on is school starting tomorrow.  And work.  And all the other life stuff.  

Respite

Whew.  It's been an eventful, yet uneventful few days.  On Thursday, we met with Dr. Gill, and Mom decided to try the chemo for sure.  Her first treatment is on Wednesday, August 17th.  We shall see how this all goes. 

I gave myself a respite for a few days...from Friday until today.  I selfishly called them my "Mom-Free Days." I didn't really mean that I didn't want "Mom," I just didn't want to face any sort of reality for a few days.  I have been so sick.  I have stomach problems, and my neck muscle is so cramped, that it has taken 3 days for it to relax.  As I posted on Facebook, I had taken 2 muscle relaxers and a Vicodin, and it still hurt.  I feel better today, but I'm sure it will get worse this week. 

I'm concerned because my normal "coping mechanism," is to just throw myself into work and "not deal."  It's not working for this situation.  I have to figure out something else.

Enough about me. Mom is doing MUCH better with her eating.  Having Sue and Aunt Elaine there this week made her a little bit stronger, but I think she'll be glad when they are home.  Aunt Elaine took us to a Chinese buffet today for lunch.  Mom ate really well, and it was so nice to see her "normal."  Come to think of it, I haven't seen her eat that much for at least a year or two.  She didn't even leave the house much in the past year. 

I talked to Dr. Gill about hospice.  He said he was all for it, but they would not support chemo.  That's probably not the case, but at the moment, I don't have time to research it.  I don't think we're in any hurry in the near future. 

My shoulders are aching just by typing this.  Ugh.  Here we go again!

Tomorrow is the family meeting day with Dr. Gill.  Was going to type a long post, but I'm exhausted.  Mom started her Morphine today.  She was totally mellow.  I'm glad she's getting pain relief, but....if she's going to be this "out of it," most of the time....I'm not sure what the benefit is? 

Sue's boss gave her Cowboys tickets for tomorrow night.  Bill is ecstatic...I'm just thinking about how tired I will be.  I guess I'll be popping and extra Adderall tomorrow!

Played "Live Like You Were Dying" for the kids today.  We all cried together.  I was surprised that Cory cried, too.  I love that I have sensitive boys and men in my family.  That's what I did well.  :)

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Today's post is below

Sigh

Today was just not a good day.  I can't even imagine a world where my mom is not living.  It's a very odd concept.  When Dad died in 2001, it was sudden.  This is the WORST, I mean the WORST way to die, in my opinion.  It is torture, but physically and mentally, and it affects not only the patient, but the extended family as well.  I've also figured out that even if I ignore the pain, and "forget," my stomach doesn't.  Neither do my nerves, or muscles.  I have never been so tense in my life.  I'd like to ask my husband to massage it, because I know he would, but it wouldn't help.  I think I'm going to need some therapy before long.

Mom seems to be getting more and more tired and weak each day.  I'm not exactly sure she's going to even make it to chemo, which she has decided to try.  She has the option of 3 weeks of IV, once a week, or a pill every day for 2 weeks.  Personally, I'd take the pill, but she wants the IV.  Again, we will see.

Aunt Elaine is here and visits Mom for a few hours each day.  Mom won't let her stay too long.  I don''t know how I feel about that.

I've been looking into Hospice and Palliative Care.  These two sound promising: Seasons and Texas Hospice.

I'm going to check them out.  When I have time.  Sigh. 

My Cancer

This kind of makes me smile. It's all about how you deal.  Always!

Exhaustion sets in.

This has been a busy weekend.  On Friday, we saw the oncologist, Saturday, the girls and I spent the day picking up her meds and grocery shopping for her.  The pharmacists at Target are amazing, and just take SUCH good care of my mom.  Her Morphine will get here on Tuesday, so I can't to see if she feels better with that!   

I have also met 2 wonderful ladies through the Cholangiocarcinoma Foundation who have taught me a lot about what to expect with her.   My friend Vanessa, who is a nurse, is also a wealth of information.   I feel blessed to know such wonderful friends.

Today, Aunt Elaine came in from Tucson.  She's just adorable.  I'm glad she's here for Mom.  Later this week, we will go together to talk to Dr. Gill again and see what her options are. 

I'm exhausted.  I'm really glad Aunt Elaine is here.  I love my mom, but I'm tired. 

Not What We Expected

We met with Mom's oncologist yesterday.  He explained that 1) she does have cancer of the Bile Duct,  2) It is Stage Four BUT 3) instead of it being fast moving, like most bile duct cancers, hers is "low grade" or..slow moving.  Basically, it is still fatal, and not operable, but because she "walked into his office, dressed nicely, did her hair, etc," he would like her to try chemo.  He said one of three things would happen: 1) the chemo would work, 2) the chemo would not work  3) it could get worse.  If it got worse, she would stop.   He told her it was totally up to her, and if she decided that she didn't want to do any of the chemo, he would give her enough pain meds to make her comfortable, however long she has.  He told her to take time and spend it with family, and make her decision.  Aunt Elaine is coming in from Arizona tomorrow to be with her for a week.  Sue is coming in on Thursday.  I will be happy to have my aunt and sister here.  It's nice to have other family helping with stuff for a bit.  Bill and I are just exhausted.  Yet...it's what you do for your parents.  Period. 

SSDD

After not hearing anything from the doctor all day, my sister, Sue, called Mom's surgeon's office.  Basically, they told us that there is nothing new that has developed.  The tests are still inconclusive.  However,  the doctors are frustrated because she has all of the other symptoms of bile duct cancer, but they can't get a definite diagnosis.  They also mentioned that they have asked and asked and asked for my mom to call her oncologist, because that's who would actually be able to diagnose her further.  Evidently there is not a true "test" for bile duct cancer, because it's so rare. 

So, after two endoscopies, my poor mommy has to wait.  For more.  If I could and were able, I'd pick her up and move to Houston to go to MD Anderson, or up North to Cancer Treatment Centers of America.  My greatest fear is that they will take so long to CONFIRM the diagnosis, that she won't get to come to terms with it.

I worry that she will end up like Alan's poor mom, who died of lung cancer.  The poor woman lived for a year with what her doctors said was a "fungus," because the "tests didn't show it was definitely lung cancer."  When they finally found a doctor who confirmed what it was, she had 2 months to live.  Somehow, I feel like this is going to happen to my mom.

I know I need to be aggressive.  I know, I know.  I just have no energy.  So much responsibility.  But I have to do it..for her, don't I ?

Live Like You Were Dying....

Mom had another scope today.  The doctor said he didn't see anything "new," but that she should have results on Wednesday.  She was so frail and upset today.  I just don't think it's going to be much longer.  It's just so sad having to hear her come to terms with that.  How could it feel to hear that you are dying.  Everytime I think about it, I think about this amazing Tim McGraw song

I love you, Mommy.  (and just for giggles....Tim McGraw looks DAMN hot in this video.  ;) )

Hope

I have to be up by 3:45 am to take mom to the hospital by 5.  Her procedure is at 7, and hopefully we will find out more about what's wrong.  I'm hoping for the best.  Hope hope hope.

Wow

  From Post Secret today

Monday

Mom goes back in for her scope on Monday.  Unfortunately, I can't be there.  I just can't take this much time off of work.  I know I haven't taken much time off so far, but I'm so sure there is going to be much more, and I haven't been there very long.  They are really working with me, and are truly concerned, so I'm not upset at all.  Bill has been with her for many surgeries before, so he will be a good substitute for me.  Sigh.  I just hope they find something concrete this time.  This waiting game is insane. 

Mom said she feels better today.  She's very constipated, though, which I'm sure makes her incredibly miserable on top of everything else.  I call her every day after work, and it really makes me feel good to talk to her.  It's like she waits for my phone calls, and gets to tell me about her ups and downs.  I used to get so annoyed that I had to hear this a lot, but now, that seems so cruel.  As long as she's still on this Earth and in my life, I'll listen to any kind of day she's having...good, bad and ugly. 

One Step Forward, Two steps back....

Yesterday, Mom got a call from her surgeon.  The results were not what we expected.  Evidently, when she had her gallbladder removed about 5 years ago, some staples that were left inside her hadn't dissolved, so they were irritating her bile duct.  According to her surgeon,this may be what caused the big mass in her bile duct. He said he didn't get a conclusive reading from the biopsy last Monday.  He said he was "confused."  However, he did let her know that her blood work shows that she does have cancer of the bile duct and/or pancreas.  SO...on Monday, August 1st, he is going BACK in and looking at her pancreas.  Sigh. Why didn't you take a look-see when you were in there before?   Bless her heart...this is too much. Even a healthy person couldn't endure many more exploratory surgery this close!  She seems to be in better spirits, but today she said she was really tired.  I want to tell her that it's probably the cancer, but I just can't say that.  All of a sudden, I feel myself giving her false hope.  It's easy to sit and think, "No, she's going to know the truth, and we are going to be truthful AT ALL TIMES."  But when I sit with her, look into her eyes, and see that inkling of the slightest of hope, I just...have to hope for miracles with her.  She knows she has cancer.  She knows there are a lot of things wrong with her, but if she wants to believe there is a remote chance that it's curable, I'm gonna let her.   <3

Mommy and my girls.

My mom with Jennifer (left) and Autumn (right) on Easter, 2011.  She looked so healthy here.  It's hard to believe that the jaundice came on so quickly.  

No News Day

Today was a really good day.  Mom felt better, and things just seemed...normal.  It's really hard, sometimes, to believe that my mom could be gone in less than a year.  It's so funny that people say "If I only knew WHEN I was going to die, it would be easier."  I'm not sure it is.  I mean I enjoy EVER LAST MOMENT with my mom.  I want it to last forever.  But lurking in the back of my mind is the fact that she won't be, no matter what the diagnosis.  She just isn't healthy.  Sigh. 

Wendy (at work) and I talked about what it would be like if we had a "celebration" for Mom, while she was living.  I wonder what her friends would think about that.  I wonder what SHE would think about that.  I just don't know. 

I don't want to have to do this right now in my life.  I still need my Mommy around. 

7 Stages of Grief

 I like this "model"...seems correct. 

7 Stages of Grief...

1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him back")

4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair.

5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

You will start to look forward and actually plan things for the future. Eventually, you will be able to think about your lost loved one without pain; sadness, yes, but the wrenching pain will be gone. You will once again anticipate some good times to come, and yes, even find joy again in the experience of living.

Progress

I talked to Mom today, and she said she is feeling a lot better.  Aunt Elaine has asked her to call her doctor, so she called to find out if he could prescribe any more meds for her pain.  He said that he couldn't do it over the phone, but for her to call Monday to see what he could do. 

We just talk about hope.  Hope. That's all we can have.  Sometimes I think it's easier for me to think that everything's ok, and if we don't address it, things will change.  I guess there's nothing wrong with that.  Why should we sit around talking about death, when she still has life. 

Like everyone says...I hope this is a bad dream.  I want it to all be over.  I am very resentful of my mother in law.  She made a flippant comment about my mom "getting all the attention," to Bill.  Like my smart son, Lance said, though, she has no filter.  Then again, fuck the filter.  Just be nice.  That would make you NOT have to worry about a filter.  How come when someone is rude, we say they don't have a filter?  If you are nice, then you don't NEED a filter.  How come it's MY mom that's sick?  Why nobody else's?  It's so not fair. 

Mom is a little less yellow, but is still in a lot of pain.  I wish she was able to take more Vicodin, but I understand how sick it makes her. 

I didn't see her today.  Bill and Autumn went to the store for her.  I may go out and stay with her tomorrow a little.  Right now, it's like everything important to me has stopped being important.  On top of it all, I don't feel very good.  I've had diarrhea for about 2 weeks now.  I think I'm also losing weight, which is kinda hard to feel bad about.  I have got to get to the doctor.  Just waiting on insurance, but I don't know.  Maybe I just need to do it.

It's all just surreal.  Surreal.   

Thursday, July 21

 Mom had her EDRP today. The doctor did find a large mass in her bile duct as expected. He also found that she had staples left in her from her gallbladder surgery years ago. He is now going to send her results to an oncologist for him to determines whats next. I'm here with her tonight. She seems a well as can be expected. Still seems surreal that she has cancer. I feel good to be here with her.

The first few days.

Friday July 14, 2011:  Sue let us know that Mom was really yellow, and wondered if we had seen her.  I said that we hadn't seen her in about 6 weeks. 

Sunday, July 17, 2011:  We all met at Mom's for Cory's birthday.  She almost glowed in the dark.  Her tan skin seemed the same, but every other part of her that should normally be white was flourescent yellow.  We almost took her to the ER then, but she convinced us that she would see Dr. Kreider on Monday morning.

Monday, July 18th, 2011:  Mom saw Dr. Kreider, who immediately sent her to the hospital to have a CAT Scan.  Dr. suspected that with Mom's level of jaundice, that she had cancer of her bile duct.  

Tuesday, July 19th, 2011:  Mom heard from Dr Kreider that she had a "mass,' in her bile duct, and would need a laparscopic procedure to determine what should be done.  Sue called Dr. Kreider, who explained that Mom had not heard all of her diagnosis, and that Cholangiocarcinoma, bile duct cancer, was suspected.  Mom was believed to be in stage 4 or later.

Wednesday, July 20th (today).  We went with mom to meet her surgeon who will do an ERCP on Thursday.  He discussed frankly with her that this is probably inoperable, and most likely fatal.  He advised her to get her affairs in order.


And that's where we are.