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.  :)

How to Comment

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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.  ;) )