August 31, 2009

Krista called me this morning before I got to Mom's and she received a copy of the final report from the Cleveland Clinic.  It is now saying Clear Cell RCC.  Although apprehensive, we are both feeling elated.  Dr. Rini in Cleveland told us that the Clear Cell RCC was much more treatable than the Papillary RCC.  We decide not to tell Mom and possibly get her hopes up, only to be dashed at her appointment Thursday with the local oncologist, Dr. Cole.

When I get to Mom's she is sitting at the desk crying.  She is just very frustrated.  She's been trying to pay bills and it has zapped her of her energy and her back is aching badly.  She has diarrhea.  When I ask what she'd like for breakfast she continues to cry.  Nothing sounds good.  She is hungry but nothing sounds good.

I mention probably a dozen things I would fix her for lunch and we finally settle on a grilled cheese sandwich.  I know that if I can put something in front of her, she will eat.  At least she has that going for her.  I cut up some tomatoes and she eats the entire sandwich and all the tomatoes.  After lunch she goes to her chair and sleeps.

I fix meat loaf, baked potatoes, asparagus and rolls for dinner and Mike and David come over.  She ate her potato and asparagus and two rolls.  I was so glad to see her eat, but she seems weaker than usual today.

August 27, 2009

Today my youngest son, Max, my baby (!) turns 18!  My husband bakes him the most awesome cake and they bring it to Mom's and we have a little celebration!  A wonderful day!

August 26, 2009

Today my wonderful Dad would have been 88 years old.  Oh, how I miss him.  This date the past two years has been a difficult one for me, but this year, surprisingly so, was better, even with all we have going on with Mom.  Dad's sister, Gert, her daughter, Debbie, my sister, Kathy, and her son, Matt, came and we laughed that we were having a birthday party for Dad!  We had a nice visit and it was the first day with no tears!  Yes!

August 25, 2009

LET ME TELL YOU THAT STATEMENT IS NOT TRUE.

Yesterday, the day before that, and the day before that day, you couldn't have told me that we would be smiling and laughing again with this horrific cloud suspended above us.  I didn't think it possible.  But it is.  I chose to write this diary of my mother in the hope that someone, who is in the state of despair that we've been in, will know that there ARE bright days ahead.

The pain lessens, the tears come less frequently, the fog lifts, and yes, it gives way to a beautiful, bright new day.

The beast, the "C" word, is still in the back of my mind and often staring me right in the face, but somehow, it gets easier.  You can give credit to whomever it is you believe in, but I'm giving my credit and praise to whom I believe in, God.

August 23, 2009

Today is another day of crying together, and trying to laugh together.  Thank God for the great-grandchildren, Thomas and Rylie, who try to add happiness to everyone.

The hardest part for me is when Mom cries.  I try so hard to be strong for her, but I'm not succeeding very well at this point.  I now feel that everyday, from now until we lose her, will be grief-ridden and sad.

PLEASE READ THAT AGAIN.....I FEEL EVERYDAY, FROM NOW UNTIL WE LOSE HER, WILL BE GRIEF-RIDDEN AND SAD.

THAT STATEMENT IS WHY I'VE DECIDED TO WRITE THIS DIARY.

I know that I'm not the first person to go through a trying time like this.  I know many, many have gone through this with their parents, spouses, siblings, friends, and worst of all....children.  I feel I am engulfed in complete doom.  I know I will feel like this until we lose Mom.  It's hard to breathe, I don't want to eat, every smile is forced.  I want to curl up in a ball and cry.  I don't want to face anyone, talk to anyone.  The anguish overtakes me.  No one understands.  How can I help Mom when I am a complete mess myself?  I just cannot describe the sadness and hopelessness I am feeling.  It's overtaken every part of my body.  I will never be able to live a day normally during this time.  I'll just be like this til then.

August 22, 2009

Tina is still with Grandma and I spend most of the day there, too.  There are lots of tears.  Mom shares that leaving her family, and having pain, are what bother her the most.  I know that she is also apprehensive of what happens after we die.  She always said that she doesn't understand why none of the millions of people who have died before us have ever come back to tell us what happens.  But I know she has faith.  I am positive of that, and I am reassured when she turns on TV and watches Joel Osteen again.  She isn't bitter or discouraged.  She is facing this with as much strength and faith as she has.

August 21, 2009

Our appointment isn't until 9:00 so we get up early and leave.  Janet is with us again, thankfully.  I can only speak for myself, but today I'm very apprehensive.  It seems like we've gotten only bad news lately and yet, I know the worst is yet to come. 

We get in rather quickly to see the tall, nice looking young man, Dr. Rini, who holds the knowledge of my mother's future in his hands.  Dr. Rini concurs with the assessment of all previous medical diagnoses.  No surgery, not treatable.  I had asked Janet to handle the tough questions, those I knew I couldn't ask.  I can tell it's difficult for her to do this, but she asks for Mom's prognosis.  Dr. Rini explains that there are basically two kinds of renal cell carcinoma, clear cell and papillary.  Clear cell accounts for over 90% of the cases, Papillary 5-10%,  therefore, there have been more studies done and better statistics known with the Clear Cell type.  Clear Cell RCC responds slightly to treatment.  Papillary RCC doesn't.  He is prescribing an anti-cancer drug, called Torisel, to be taken intraveneously weekly.  He informs us it is not chemotherapy, but may help in the growth of the evil intrusion. Then Dr. Rini answers the difficult question...a life expectancy of 12 - 24 months with Clear Cell RCC.  Mom has Papillary RCC.  My stomach aches, I feel dizzy, and I want to cry but I have to hold it together for Mom.  The only question Mom asks all day is this question now...."will I have pain?".  I realize then that in her wonderful, intelligent, bright mind, she has understood.  I look at Tina, Mom's granddaughter, and she is crying.  Janet continues to ask questions that she understands.  I really don't know what happened after that.  I'm in a fog.  The next thing I realize is that we are walking out of the building, I am pushing her in her wheelchair, and I am crying.

Right now, I don't think life can get worse.  I had driven to Cleveland but I don't want Mom to see that I'm crying.  Tina is crying, too, so Janet takes the keys and drives, and Tina and I silently weep in the backseat.  Janet is so wise and keeps Mom's mind busy with having her help with the GPS and directions.  Tina and I text back and forth in the backseat unbeknownst to Mom.  My heart is absolutely broken.  I feel much like I did the day my dad laid at the hospital after having a brain aneurysm, waiting on him to die.  I didn't know I could hurt this much.

We need to eat on the way home and again, Janet handles that for us.  She knows Mom's favorite restaurant is Red Lobster and she finds one and takes us there.  Surprisingly, Mom eats very well and for that I'm grateful.  Tina and I picked at our food.  Somehow we get through the dinner and arrive at home.  We leave Mom and Tina at Mom's and Janet drives me home.  I sob hysterically when I get in the car, like I did when I first saw Dad.  It's happening again.  I'm losing a parent.

August 17, 2009

We thought today would never get here!  My friend, Janet, is an RN and has been advising and helping us get ready for today.  I don't know what we would have done without her.  She initiated getting all the past medical records from Lima, and reminded me to get the ones from Mom's nephrectomy in Marion.  She handled the paperwork and did the leg work for us.  She is an angel. And, she is with us at the Cleveland Clinic today.

We stayed at the Cleveland Clinic Guesthouse last night as our appointment is at 7:00 this morning with Dr. Goldfarb, nephrologist.  We are armed with all Mom's records.  We can tell that Dr. Goldfarb has gone over the records we brought with us pretty thoroughly before he came in the room.  He says that Mom is not a candidate for surgery for several reasons....her age, weakness, loss of weight, and the tumor is pushing into the superior vena cava.  Any surgery would undoubtedly be fatal.  He refers us to Dr. Rini, an oncologist at Cleveland Clinic, and we are able to get an appointment with him on Friday, August 21.

July 21, 2009

Our first appointment is with Dr. Powell, oncologist.  Just driving up to the building with the large "Cancer Center" sign in front is daunting.  My stomach is doing flip-flops, as I know my sister's is as well.  Mom is just quiet.  I can only imagine what her stomach is doing.  We walk in and I immediately see someone I know.  Someone I DIDN'T know had cancer.  For some odd reason I don't feel so alone in this battle now.

The tech and the nurse come in and take information from us about Mom.  Mom helps out with the information because she is blessed with a wonderful and complete memory.  That is one thing that despicable cancer hasn't touched.

Finally Dr. Powell enters.  He's a young, round sort of guy with a nice smile.  He tells us that surgery is not an option for Mom.  This is particularly devastating because Mom had been feeling confident all week that they would be able to surgically remove this invasion.  I knew her heart just broke a little.  He mentions a drug called Sutent.  He explains the side effects, which are many, and touches on the cost.  I ask him again if he is sure she isn't a candidate for surgery, and when he responds, he wiggles his fingers and parts his hands to give me the impression it has spread.  One bad thing after another.

We have an appointment with Dr. Imler after a quick lunch at Happy Daz.  It's good to see him as I know it is a bright spot in Mom's day.  I think he is as fond of her as she is him.  He reads her report thoroughly and concurs that surgery isn't an option, but I can tell that he isn't in favor of her taking Sutent.  I asked him what he would do if she was his mother.  He tells us that he has connections with a top nephrologist at the Cleveland Clinic and he would like her to see him.  Of course, we are very willing.  He calls Dr. Powell and discusses this option with him and Dr. Powell agrees we should take that course of action.  We can hear Dr. Imler's conversation with Dr. Powell and he tells him that Mom has longevity in her genes, and is very bright and aware mentally.  He also tells him that this is what he would do if she was his mother.  I know this made Mom feel extra good!  Dr. Imler's assistant makes the appointment for us to go to the Cleveland Clinic on August 17.