Happy New Year

Wow did 2012 fly by.  A lot of changes, bumps in the road but most importantly many moments that took my breath away!

This is incredible and shows us what the heart is really made of.  It's people together!  It's incredible moments when a mother makes the decision to donate her beautiful daughter's heart to a stranger.  All she knows is that a person 51 years old needs a heart to survive.  This picture is for my donor, Jazmin and her mom, Evelyn.  I wouldn't be celebrating another year without the incredible gift of life!

Mark and I are at the trailer and will be here until Wednesday.  We are celebrating New Year's together alone.  No parties to attend.  I want to stay close to home and away from a lot of people.
It's going to be a quiet New Year.

Happy New Year to all!  Be safe!

Love,
Debbie

A Wonderful Christmas Day

I had a wonderful Christmas!  Spent Christmas Eve at home with Mom, Mary and Girls and my boys Matt and Max.  Erin and Markie were at her parents house for Christmas Eve.

To be honest I didn't feel good.  Saturday morning Mom took me to the clinic to see a doctor for pain on my left side.  It had been there for days and of course I kept complaining to the doctors thinking the pneumonia was back or still there.  After taking xrays the doctor felt the pneumonia was clearing up and really did not understand what the pain was.  So I emailed the lung specialist, Mindy Shapiro and told her how much pain I was in and yesterday she ordered Incodin which only cures Pleurisy.  By last night going to Markie's for Christmas dinner I finally felt the pain going away.  I was able to play with my grand kids and feel good.  Thank God, Pleurisy really is painful!

Maxwell is home this week and I plan to spend time with him.  First on the list is his favorite foods to eat.  Steak is at the top with bake potato and tomorrow I'm going to make him pot roast with mash potatoes and gravy.  He is doing great in San Diego with school and his job.  We are so proud of him.
Probably won't see him until our trip to Tahoe in March.  Can't wait!

Christmas dinner was soooo good!  Erin made a ham with salad and vegetables.  I was in charge of the scalloped potatoes and I made a 9 pound prime rib roast.  Wow was that good!  The kids were so good and played with all their new toys.  Little Markie walked around the house with his hockey gloves and helmet on (even wore his helmet at dinner).  It was a fun night.

So today I'm going to relax.  I have chemo tomorrow but this is an off week from Decadron.  So I'm not sore and with this new medication I don't have pain.

Mark and I are going to the lake house on Saturday until next Wednesday.  I'm so glad to spend time at my little place.  So peaceful!!!  I have to be back before Thursday for chemo.

I'm ready to celebrate the new year.  I hope and pray 2013 will be a good year for everyone.  I know deep in my heart that every moment I have in 2013 will be a blessing.  I will cherish each and every one of them.

Say a prayer for my Dad.  He's in the hospital and not doing well.  As all of you know I have been estranged from him for years.  This does not mean I don't love him.  It means that my Dad, the one I want to remember, died a long time ago.  He is suffering with major health issues and not to mention being away from his family.  I hope and pray Nana Salvato opens her arms and takes him with her.
Love you Dad!

Happy New Year! Be Safe!  I watch a good movie yesterday with Clint Eastwood called Trouble with the Curve.  His wife died and on her tombstone was the quote:

 

 

"May God Grant You Extra Innings"

 

Isn't that true!  Loved it!

 

Love,

Debbie

 



Gingerbread Houses

Forgot to post pictures of my gingerbread houses I did with my grand kids.  It was so much fun!
Little Markie really knew what to do this year and Hailey just wanted to eat the Royal Icing so Nana had to help her decorate.  Moments I will never forget.

Love,
Debbie

A Sad Day

 

 

Today will be a sad day for my family.  My sweet angel Auntie Mary Joan lost her battle with breast cancer.  She was a fighter to the end.  She saved my mom and I will always be grateful to her.  She was a very and I mean very generous person.  Never asked for anything in return.  I will always miss her beautiful smile.  I am at peace knowing she is not suffering anymore and will always be my angel in heaven.

Love,
Debbie

My Sweet Little Angels

Yesterday Was A Sad Day

Yesterday was 12-12-12 and a lot of people think it was a lucky day but not for me.  Yesterday my sweet auntie Mary Joan lost her battle with breast cancer.

She was a fighter to the end.  A beautiful person both inside and out.  Very, very generous and always reached out to those in need.

Although I called her Auntie, she was my first cousin.  She was my Dad's older brother's daughter and was only a few years younger than my parents.  To respect my elders, I have always called her Auntie Mary Joan.  This also includes several other first cousins too.

I thought last night that the word "Auntie" started with the letter "A" and so did the word "Angel".  She is truly an "Angel" now.  I prayed she would watch over me and give me strength to keep fighting this horrible disease. 

I know deep in my heart that she is in heaven with Uncle Doug and that she will watch over all of us.  This gives me peace!

Please say a prayer for her.

Love,
Debbie

There's No Place Like Home

There's no place like home!  Boy is that true!  I'm so glad to be home finally from the hospital.  Went to the lung specialist on Monday.  I'm still sick with pneumonia and have to take it easy.  One thing that upset me so much was the lung biopsy showed amyloid in my blood tissues of the lung.  The hospital doctor told me the news and said to stop taking the meds for the pneumonia and that there was nothing they could do.  So I basically was given the death sentence.  I called Dr. Kevin Anderson immediately.  He calm me down and explained exactly what was going on.  The truth is if the doctors did biopsies on other parts of my body they would find amyloid everywhere.  Our bodies have amyloid every where in the blood tissue.  The doctor lead me to believe that the amyloid is what caused the infection in my lungs.  On Monday I met with the lung doctor and she said no that it is pneumonia.  Yes I have amyloid in the blood tissue of the lungs but that is not what caused me to be admitted to the hospital.  My oxygen saturation is still low at 88 but they all feel once I have cleared my lungs of the pneumonia that will go up to normal range in the 90s.  I'm so glad to be off the oxygen.  What a pain that is.  I couldn't go anywhere for more that 3 hours and at home I was on a leash (tubing) all through the house.

So I had a 3 week break from Decadron and this week was my first time back on.  To be honest I have not been sick or sore this time.  What is that all about?  Next week I am going to take my break from Decadron.  I will continue with my normal treatment of Valcade every week, Decadron every other week and Cytoxan once a month 300mg for 5 days.  I will do this until Stanford contacts me with a new treatment plan because of the recent discovery of the amyloid in the lungs.  I don't really think Dr. Schrier will change the treatment because my numbers are low at 70.  But we will see.

Saturday is my little grand daughter, Hailey's 1 year birthday.  We are having a big birthday party for her on Saturday.  Sunday everyone is coming over to decorate the gingerbread houses I have made.  I made 7 little ones (Markie, Hailey, Angelina, Ashanti, Amelia, Cashious, Riven and two big ones for me and Nancie.  Sunday is gingerbread decorating day with the kids.  I'm so excited.  I have done this for so many years and don't want to break the tradition.  It means so much to me and I'm going to enjoy every moment.

First time ever Mark and I are getting a fake Christmas tree.  I'm tired of the mess and the problem with lights burning out and the cost.  For $50-$75 you can get a 6.5 foot tree with the lights already on and the stand.  So tonight we are off to look for a bargain fake Christmas tree.

Maxwell will be home for Christmas and I'm so happy.  I haven't seen him since I visited him in San Diego in October.  He is doing so great!  Going to school and has a great job.  Mark and I are so very proud of him.

Please include in your prayers Auntie Mary Joan.  She is really sick and Hospice has been called in.  I don't want her to suffer anymore.  She is truly an angel and I love her so very much.  Also, please include in your prayers my dear friend Judy from Virginia who is suffering with Amyloidosis.  She finally after 7 years waiting for a kidney transplant found a match donor only to find out that the disease has spread and the transplant was cancelled for tomorrow.  She is very sick and needs the transplant ASAP.  Please pray for both of them and all who suffer from terrible life threating diseases.  Be grateful everyday for your health.  Money, jobs, things do not make you healthy or happy.  Enjoy every moment you have on this earth.  Life is so precious!

Love,
Debbie

Still in the Hospital

Day 6 in the hospital.  Hoping to go home tomorrow.  The doctors are concerned about my oxygen level.  It is too low.  This morning blood pressure and oxygen was too low and I have headaches, shortness of breath, and leg cramps.  Just did not feel good!  They still say it is not the heart.  I hope so.

Don't have much to say except please pray.  I need those prayers.

Love,
Debbie

Time in the Hospital

I have been in the hospital since Friday.  I was in so much pain and finally went to see the doctor.  She took xrays and said I have pneumonia.  The pain has been so bad my oxygen level is down in the 80's.  I hope I will be going home today.  I have to do xrays this morning and hopefully it shows I'm improving.  They did a CT scan on Saturday night because they thought I had a blood clot.  Everything was negative.  They also did the blood test for enzymes to see if I had a heart attack.  That was negative and my EKG was perfect.  So the heart is ruled out and all they can say is I have a bad case of pneumonia.  My job these days is to take care of this body and that will be my goal for the next few weeks.

Thank you to all who have sent me prayers and special thoughts. Thank you to my husband, sister Mary and Nancie my neighbor.  They have done so many things to help me while I have been here.  Nancie is an RN and she really made sure I was comfortable.  She even stay all day Saturday until the doctor came in and asked the important questions.  I appreciated that so much.

I hope everyone had a wonderful Thanksgiving.  It was my birthday and we spent it at Joey and Rachel's house.  They did a beautiful dinner and every moment was the best!  I am so thankful to have such a loving family!

I will keep you informed when I will be getting out of the hospital.

Enjoy every moment!
Love,
Debbie

Happy Thanksgiving

Happy Thanksgiving to all!  May your day be blessed with family and friends.  Be thankful, be happy and above all MAKE EVERY MOMENT COUNT!!!

Just got back from Pittsburgh yesterday.  To be honest did not feel well the whole time there.  I was on the stronger dose of Cytoxan and it made me really sick.  I spent most of the time in the hotel in bed.  I didn't go to the game on Sunday with Mark and Jeff.  Just too sick!!!  Then the worst of it was the flight home yesterday.  United changed our flight from a non stop to a lay over in Houston.  So instead of a 4 hour or so flight, it was over 7 hours for both flights.  I was exhausted yesterday.

I have been having trouble with my neck since having the heart bio in September.  The doctors think they hit a nerve.  So I have constant pain on my right side of my neck.  I remember a point during the bio when the doctor was pulling out the sample my entire body jerked and came off the table.  It didn't hurt but it definitely was a nerve that was hit.  So now they are trying to decide whether to put me on antiflamatory medication (more steroids).  This is such a pain in the A_ _.  I wish I could feel the way I did over a year ago but unfortunately I have been going down ever since last September.  Yes my heart is strong and I'm surviving a rare fatal disease but I don't feel like my quality of life is what it should be.  I'm blessed and thankful for every day and enjoy every moment I have.

We are having Thanksgiving at brother Joey and Rachel's house.  I'm so excited.  I decided not to take Decadron this week because again I would be sick.  I want to enjoy Thanksgiving and my birthday which is on Thanksgiving!  We made 16 bags or 42 cups of home made gnocchi.  I think we will have enough.

Lots happening the next month.  Hailey turns 1 on December 8th.  I have to start making my gingerbread houses for my grandkids and my donor sisters.  Evelyn and the girls are coming to the trailer and we are going to have a weekend together (girls only) decorating their gingerbread houses.  My little house here is just too small and I thought it would be fun to spend the weekend with Evelyn and the girls.

Have a Happy Thanksgiving!

Love,
Debbie

I'm Sick!!!

Took chemo today and Decadron.  Now I'm sick!!!!  I hate Decadron!!!  I'm excited about no Decadron next week only Cytoxan and Velcade.  I'm off to Pittsburg to see my Steelers beat the Ravens!  Can't wait to go!!!!

Enjoy every moment!

Love,
Debbie

Sorry too sick to write more.

Off Decadron

They are the reason I keep fighting!!!

Can only say off decadron this week and feeling good.  Had a little joint pain and aches which is because I'm not on the steroid but I will take the pain.  Not feeling sick and today is Thursday and so far no soreness or swelling.  I still took chemo on Tuesday and was so nervous thinking I would have other side effects because these past 4 years I have always taken Velcade with Decadron.  So happy to be feeling normal even if it is every other week.

I am so blessed to have a loving and supportive family and friends.  Life is good!!!

LIFE:  Make time to enjoy the simple things in life.  Spend time with family.  Forgive even when it is hard.

Love,
Debbie

Visit to Stanford

Well the boxing gloves came out between me and Dr. Schrier.  As always before he comes to visit I meet with a fellow (medical student doctor).  He quickly asked me if I had any problems and quickly stated that Dr. Schrier was aware that I hate Decadron.  I told him the side effects and felt my quality of life was poor.  I'm so depressed, sick, sore and really tired 5 days out of 7.  I'm really starting to stress about taking Decadron for so long.  I fell again last week and know that sooner than later the next time will be serious.
So he took his little notes and left us for about 20 minutes.

The door swings open and quickly Dr. Schrier says "ok, I'm increasing Cytoxan to 300mg and I'm giving you a break from Decadron every other week but you will still be on Velcade every week".  Wow Mom and I just looked at each other and smiled.  I was just asking for one week off Decadron (don't tell him that) but every other week is GREAT!  Now next week will tell.  I have never been off Decadron and still taking Velcade.  So which drug causes the side effects.  I really and have always thought it was the Decadron but next week will tell.  I hope and pray now that it is and not the Velcade.  When I had my stem cell transplant in 2009, they gave me Decadron and not Velcade and I had the same side effects.  Please Please be the Decadron!!!!

Dr. Schrier is concerned about blood counts, kidney function and bladder function increasing my dosage of Cytoxan to 300mg.  He is monitoring it weekly before each chemo treatment.  My numbers are low 70 and he is happy about that.  No new occurrence of Amyloid in the heart.  This was big news to him.  He was very happy about that and felt the Cytoxan is working to protect the heart.  I had a multitude of tests on the heart for the last few weeks.  Every thing has been perfect!!  I'm so blessed to have been given this second chance at life to receive a beautiful gift like this.

Looking forward to my trip to Pittsburgh next month.  A little disappointed that we can't see a hockey game but we will have so much fun.  Our good friend Jeff is coming with us.  He just loss his girlfriend this year and needs to have some time away.  It will be so fun!

I have this beautiful quote hanging from my wall next to my bed.  It is about LIFE.  Smile often.  Be grateful.  Be the change you wish to see in the world.  Try new things. Work hard.  Don't count the minutes count the laughs and above all... make every moment count.

Love,
Debbie

LIFE!!

LIFE!  Believe in magic.  Tell stories. Love with all your heart.  Never give up.  Do what you love.  Follow your dreams.  Be happy.  Live today.  And above all... make every moment count.

These are words I try to live by each and every day.  Sometimes it is very very hard.  I keep fighting because I have so much to live for.  My wonderful husband, Mark, my three sons, grand kids, family and friends.  I have so much more to see and do in this life and I'm not ready to go!

I want to laugh again till my belly hurts!!!!

Everyday it is a struggle to maintain my health, emotions and mental state.  This week was especially hard because I was on both chemo drugs at the same time.  Usually for the past 3 months I would take Cytoxan after getting Velcade.  This month they landed on the same day.  So I was so sick this week.  To make things worst I fell again!  Now my left foot (which I fractured months ago) and ankle are swollen and sore.  Not to say again about the huge cut on my right leg which will turn black and blue soon.  This sucks!  I know I am at risk of broken bones because of the steroid but here we go again. 

I received my light chain count results yesterday.  Last month down to 61 and this month up to 70.  I know its only 9 points up but I was hoping for a big drop before seeing Dr. Schrier next week.  I really want a break and I need it!  I'm not asking to stop chemo (either one) I just want to stop Dex for one week a month.  As I have said before so many times, that steroid is awful and has so many side effects.  I just need a break.  So Tuesday hopefully he will give me a break from Dex.  I lowered my dose from 40mg to 20mg and that has done nothing, so I think one week a month will help.  I want to be a person again.  Being sick from Tuesday till Saturday is not the way to live life.  It is holding me back from doing the things I want to do.  LIVE LIFE!

Keep sending those prayers for Auntie Mary Joan, me and all the others in the world fighting for LIFE!

Love,

Debbie



MY SWEET LITTLE GIRL!

Tests Tests and More Tests

I'm so tired of being poked at for the last two weeks.  I had my annual heart biopsy last Tuesday.  No evidence of rejection.  I met with Dr. Dana and sat down with her to talk over some things that have been bothering me.  I asked her about my survival with a transplanted heart.  She said my heart is very healthy and strong.  She doesn't worry about the heart.  Also, I am living and surviving with a rare fatal disease that my numbers are going down (61) and she is not worried about that either.  What she is worried about is the effects of Decadron on my bones.  She said sooner than later the bones will start breaking and she said I really have to do more weight bearing exercises.  I told her easy to say when out of 7 days only 2 days I feel good.  The reaction I get from the Decadron is getting worst where I sometimes can't even get out of bed.  My family doctor is conducting some muscle lab tests on Friday when I am in the middle of the reaction.  She also said to take Benadryl for the reaction and maybe that will help.  I'm trying everything.  I hate feeling sick, tired and sore every week.  The goal is to get my numbers to normal range 5-26 and maybe Stanford will let me have at least a one week break.  I need it!

Spent last weekend in Chico visiting Danny and Diane Long.  Mark and I drove up on Thursday before everything hit me on Friday.  Friday I couldn't even get out of bed and slept most of the day.  Then Saturday a little better and by Sunday feeling good.  We just stayed at their house eating, drinking (them not me) and talking to the late hours.  They are coming to stay with us on the 19th.  So excited they haven't seen our new home and I'm happy to see them again.

This weekend its to the lake.  We haven't been there for 3 weeks.  Just been so busy.  I'm so excited to rest and relax.  Things have been so stressed around here.

My beautiful loving Auntie Mary Joan is not doing well.  Please say prayers for her.  I just don't want her to suffer.  I love her so much and this is so very hard on my Mom.

Wow does this say it all!



LIFE:  FIND A PASSION AND PURSUE IT.  AND ABOVE ALL... MAKE EVERY MOMENT COUNT.



Love,

Debbie

Great News!!

Just saw my results for the month for my light chain count.  Down to 61 from 77 last month.  Finally going down again.  So frustrating last month when they went up slightly.  Being on two different chemos and they go up was really depressing.  But then today good news.  Still not at normal which is between 5-26 but getting there.  I'm hoping to reach normal range and at least stop dex and valcade every week and go on a bi-monthly schedule.  Dexadron is awful, as I have said many times, but for some reason its getting worse.  Nausea lasts from Tuesday till Thursday all day and night.  I'm not sleeping and feel so tired.  I just finished a course of Cytoxan and it does make me more tired.  If you are reading this post, be thankful for every day you have your health.  Going through this experience is awful.  I wish everyday that I didn't have Amyloidosis and ok I can deal with the heart transplant but the chemo and drugs are taking its toll.  Then again if I didn't have Amyloidosis I wouldn't have needed a heart transplant.  I don't ask why and know someday I will know the reason but for now I fight on.

I had a wonderful time in San Diego with Matthew and Maxwell.  Record heat was awful but being with my sons was the best.  They cared for me and watched over me.  I felt like a Queen.  I cooked Max's favorite meals, steak, pasta and chicken parm.  Especially everyday breakfast in the morning.  He was so happy to wake up each morning to a big breakfast.  Of course, every night the boys went out to the clubs and they were feeling no pain in the morning.  I miss him but I'm so proud.  He is going to school and has a great job.  He is supporting himself totally.  I have the best sons in the whole world!!!!!

Next week on September 26th will be 4 years since heart transplant.  Although it is a blessed day, it is also a sad day.  My angel in heaven, Jazmin will always be in my heart.  My donor family loves me and I feel so blessed to have them in my life.  God bless you Jazmin!

This weekend fun times.  Raiders and Steelers game on Sunday.  Having a football party with our tenant and new friend, Nancie.  Both houses will be open for swimming and watching football.  Great food, drink and good friends.  Go Steelers!!!

Go out and find those people and enjoy every moment!

Love,
Debbie

Haily 9 months

Hailey "Bug" 9 months old

She is crawling everywhere and soon will be walking.  She is so sweet!

Words Cannot Express

September is a month to remember for the rest of my life!  Four years ago in September my life changed forever.  I am blessed to have a second chance at life but realize life is short and every moment is a gift.  Family and friends mean more to me now than ever before.  I went shopping a month ago at the pharmacy in Kelseyville.  I brought a sign that said "Live Simple" and that is what we have done.  Mark is so with me on this change of life.  We enjoy each other more now than ever before.  He is always asking me "Are you happy?"  My answer "Yes" because he makes me happy everyday!

Today is especially or should I say this month is especially hard.  I'm sad but realize how blessed I am to be here writing this post.  Tomorrow will be a better day!

"SO TRUE"

"NEVER FORGET THIS"

I'M SO LUCKY!

Love,

Debbie



Summer is Almost Over

Congratulations to Douglas Drafting and Douglas Painting Baseball Team!  2012 City Champions!  As you can see, Mark (Big) got a beer bath from the players.  It was so funny!

I'm so lucky to have those around me who truly believe and love me.  Life is so good!!!!

Nothing special has happen the last few weeks.  I finished another course of Cytoxan.  My numbers went up from 74 to 77 this past month.  It's so frustrating going through the chemo, sickness, being sore and tired and then the numbers do nothing.  I was hoping for a big jump down again but maybe this month.

Mark and I have not been to the lake house for almost 5 weeks.  We have been very busy on the weekends and then had more trouble with the electricity there.  Two weeks ago the outside electric pole got on fire and thank God Jeanie was there to stop it.  Well the fire chief would not turn on our electricity until we got certified by an electrician.  That didn't happen until 5 on Friday.  Too late to go and I felt really awful that day.  I told Mark that each month the week after taking Cytoxan I'm really in pain.  I just couldn't drive to the lake that night.

So this next weekend is the Big Weekend at the lake.  The owners of the park hire a DJ and we have a big BBQ with games for the kids.  Markie and Erin are coming up with my grandkids.  I'm so excited for little Markie to play in some of the games and play with the other kids.  It will be lots of fun.  I miss being up there.  I'm looking forward to spending more time there now that the electricity is completely fixed.  I love my little house.

Maxwell is settled in San Diego.  He has a job and is going to school.  He loves it there!  Matt and I are flying down there next month to spend 5 days with him.  Of course Mom will be cooking the whole time.  Max said just make him a few pots of spaghetti sauce.  It will be fun!

Well off to a BBQ at my neighbors.  Enjoy every moment!

Love,
Debbie

Busy Busy Busy these days!!!

First I want to show off my little guy and his soccer team at Little Kickers in Santa Rosa.  So cute!  He tells me when he comes back from playing that he kicked the ball and scored!  Where do you think he gets that from!  Markie is the little boy 3rd from the left.

Hailey is moving everywhere.  She is crawling and pulling herself up.  She is so sweet and she is finally recognizing me and that makes me smile.  Mark and Erin went on vacation to Lake Tahoe and Hailey and Markie love the pool.  She was looking out for her brother who pretends to be a shark!

Last Saturday was Anthony and Laura's wedding.  Wow that was so special!  It really took my breath away watching my nephew standing there waiting for his beautiful bride.  My brother gave a very lovely speech and there was not a dry eye in the place.  The cousins had a great time together.  We realize as a family how important it is to come together for special occasions and dinners.  Our next family dinner will be at the lake house.  That will be so much fun.

Started my monthly course of Cytoxan on Wednesday.  Feeling really really tired today.  Stanford increased the dosage to 250mg and its made me really tired.  I had a terrible day on Tuesday and Wednesday with alot of nausea.  I hate feeling that way.  Today no nausea but just the usual soreness and fatigue.  We were going to the lake but I'm just not up to it.  We also have a birthday party on Saturday for Todd and Sherrie Schapmire's grand daughter so we would have to come back early anyway.  There's always next week.

This says it all!!!!

Love,
Debbie

Hailey Bug 8 months old

 HAILEY 8 MONTHS

HAILEY BUG GOING FOR A SWIM

Quote to Live By

 EVERY MOMENT IS A GIFT!!!

SO TRUE!!!

I LIVE MY LIFE EACH DAY BY THIS QUOTE!  SOMETIMES ITS HARD BUT I HAVE SO MUCH!

I thought about this blog I have written for the last 4 years since having my heart transplant.  I realized that it will be here even when I'm gone and it will be something my family, friends, grand kids can read and look at pictures and know in their hearts how much I fought to be with them.  I have really enjoyed writing and sharing moments with everyone.

love,

Debbie

Lots Going On and Back To Empty Nesters

Yes, back to empty nesters.  Maxwell left this morning to attend school in San Diego.  So funny to see him pack up with a trailer behind his truck full of furniture and household items.  We went to Walmart on Saturday to buy him a few things he was missing like a butter dish.  Can't believe I'm shopping with my 21 year old son buying a butter dish for his new apartment.  Max will finish his GED courses and then transfer to San Diego State next semester.  We are so proud of him.  He has worked very hard this summer to save up the money to pay for his apartment and expenses.  He will be returning on Thursday to attend Anthony and Laura's wedding on Saturday and work another two weeks here before starting school.

Our family is so proud and happy for Anthony and Laura.  It will be a moment that takes my breath away!  Everyone is putting bets up to see who cries first, my brother Joey, Anthony or Laura.  I'm betting on my brother.  He is the best man and looking forward to this special day.

Mark and Erin with the kids are vacationing in Lake Tahoe this week.  I will see the kids on Wednesday at the Championship Baseball game.  Mark, my son and Mark, my husband are so excited that finally after so many years they could be champions again.

Hailey is crawling everywhere and pulling herself up onto the tables and my legs.  She is so cute and loveable.  Markie is all boy and to be honest I think the 2's are coming out.  He plays so rough and I have to tell him to be gentle to Nana.  We play hockey and make sand castles in his sand box.  He is playing soccer with Little Kickers and loves it.  He tells me all the time "Nana I kick the ball".  He loves sports.  It is amazing to see him sit and watch a baseball game.  His favorite player if you ask him is "Buster Posey" and then he will say "Matt Cain is Daddy's".  He is so sweet!

As for my health things are going along.  That's about all I can say.  I saw Dr. Schrier last Tuesday at Stanford.  He was happy about the numbers going down to 74 but said we still have a way to go.  He wants them at 26 or lower.  He increased the dosage of Cytoxan to 250mg per day.  I'm still not feeling good from Tuesday to Saturday and only feel good on Sunday and Monday.  It really sucks!  I hate the nausea, soreness and fatigue but I have no choice.  I will continue fighting because "life is so good right now".  I have never been more happy in my life than now.

Haven't been to the trailer for a few weeks.  The electric panel was shutting off and we were told it was very dangerous.  So we had it fixed last week and will go up next week on Thursday.  Mark is taking off Friday so we can go.  We have a birthday party on Saturday so we have to be back in Santa Rosa.  I miss my little place.  Our yearly Labor Day party at the lake is fast approaching.  I can't believe August is here and almost gone.

I planted so many tomatos this year and they are growing everywhere.  Mark teasing me about how small they are but I love cherry tomatos.  I eat them like candy.  He loves them too but would like bigger ones.  I did plant some Russian Purple Heirloim ones that are so good.  I use them to cook alot with especially in my morning eggs.  So good!!!!

Well for now I wish you much love and happiness in your life.  Celebrate each and every moment as though it will be your last.

Love,

IMPORTANT MESSAGES TO LIVE BY

Debbie

What Would I Do Without My Mom

I am so lucky to have a Mom like mine.  She is my rock and I will always be grateful for the loving things she has done for me during this past four years.  I can't imagine seeing and doing what she had to do taking care of me.  I love you Mom!!

I'm 74!

No I'm not 74 years old but the best news ever!  My light chain count went down to 74 from 96 last month.
That is the lowest I have ever been.  I do have a way to go to reach normal which is between 5 and 26.  The second chemo Cytoxan is working and I will see Dr. Schrier next week.  Hopefully he won't increase the dosage but if he does I will accept it and keep fighting.

I feel so peaceful right now knowing that my numbers are going down and that my heart or any other organ is not being jeopardize.  I still deal everyday with the fact that someday I might have to deal with the side effects of the chemo and other drugs I take, but again I will keep fighting.

This was a moment I will cherish!
Love,
Debbie

What's New

Just got back from seeing Dr. Akhtar.  I did my light chain blood test yesterday but the results are not back yet.  This is so scary because if they don't start going down I don't know what Stanford will do next week.  My biggest fear is another stem cell transplant and I just don't think I can do it.  I'm not as well physically and mentally when I did it in 2009 and I'm really afraid.  I should know something by Thursday and hopefully being on Cytoxan for three dosages so far it will really kick the numbers down.  I'm really really tired everyday from the new chemo and the nausea is getting worst each month.  Dr. Akhtar said its the fact that now I'm on 2 chemos and they are pretty powerful ones too along with Dex.

Mark and I have been going to the lake house every weekend.  I love it so much!  It is truly our home away from home.  I usually just sit in the house because I feel awful but its a beautiful place to be.  I get out and walk Mia and visit with friends but most of the time I relax, watch movies and nap.  It feels so good to take naps and I try to do it alot.

Sunday is going to be so much fun.  My niece Brittany is pregnant and due next month.  My sister is giving her a baby shower here at my house.  I am trying some new recipes and looking forward to seeing my family.  It will be a beautiful day!

Today I touch two people's lives.  Before leaving chemo I stopped to give encouragement to them about the chemo drug Velcade and taking it subQ.  It felt so good to talk to them.  I could tell they were happy to hear I have done so well taking the drug subQ.  One man was so scared, I could see it in his face.  I hope and pray what I said helps them through it.

Enjoy every moment because every moment is a gift!

Love,
Debbie

I Love It!

Mark and Debbie

Ha Ha

Isn't this the Truth!!!

Special Day for Twin Angels

God Bless You Jamae and Jazmin.  Special day for you.  This would have been your 22nd Birthday and I hope you are together on this special day.  You will always be in my thoughts and prayers.

love,

Debbie

Favorite Quotes

THIS IS MY LIFE!!!

AND THIS IS THE TRUTH!!

LOVE,
DEBBIE

Hailey 7 months old

MY SWEET LITTLE ANGEL

5 Days at the Lake

Oh my God!  Are they the cutest grand kids!  I'm so lucky!

Spent 5 days at the lake and its almost over.  Sad!  Mark and I spent 4th of July with Todd and Sherrie Shapmire in Ukiah.  Had a wonderful time.  No matter how long its been since we saw them, it always feels like it was just yesterday.  That is true friends!  Finally got to go to the Kelseyville Pharmacy.  Now you are probably saying "so what".  It is the cutest little pharmacy with a gift shop in front.  Of course I got in trouble and brought some many cute things for my yards here at the lake and at home.  I brought Mark wind chimes.  They are "Redneck Windchimes" with beans and beer cans.  So funny!!!  I love my yards at the lake and at home.  They are really colorful with all my roses and flowers and the art work I have collected.

Well today is another rest day on the lawn on the lake in my favorite lounge chair.  I wish the kids could have come up but they are so busy.  I'm hoping at the end of the month they can come up.  I have talked to Markie about feeding the ducks, walking Mia to the dog run and just playing in the swim area.  This little place is for family and I want my family here enjoying every moment of it.

Have a wonderful day and remember to make moments that take your breath away!!

Love,
Debbie

Hailey and Nana Enjoying the Day Together

Is she the cutest!

This is what life is all about.  Enjoying moments that take my breath away! 



I HATE DEXADRON!!!!

I hate the steroid Dexadron I take each week.  Talk about quality of life, it SUCKS!!!  I'm sick Tuesday and Wednesday, then Thursday, Friday and Saturday I'm so sore and tired.  The new drug is causing problems too.  I'm really tired and have GI tract problems to deal with.  These drugs are awful.  What is worst the drugs or the disease?

I guess I'm having a pitty party by myself but it hurts.  Things have changed so quickly the past 4 years and its sometimes hard to deal with.  Yes I know there are worse people out there then me but they are not ME!  I'm suffering too.  But then reality sets in and I realize I could have died 3 1/2 years ago.  I wouldn't have seen my beautiful grandchildren who keep me fighting each day along with Mom, Mark, my sons, Erin and my loving family and friends.  So I will continue to fight!!

July 13th will be Jamae and Jazmin's 22nd birthday.  Evelyn and I and the girls will be together.  We planned to have a picnic at the beach in Bodega Bay that day.  I'm so excited.  It will be a day of many treasured moments.  Evelyn wants to spend that day with me.  I'm so blessed to have a donor family who loves me.

Next week Mark and I will be staying at the lake house from Tuesday till Sunday.  We are so excited to have all that time off together up there.  We will be spending time with Todd and Sherrie Schapmire one day and Mark and Erin with the kids will be up on Saturday.  I'm happy Markie is coming up.  We have talked about feeding the ducks, walking Mia to the dog run and playing in the swim area.  It will be so much fun!  Mark and I will take a drive around the lake one day.  I want to go to Gaylan's drug store in Lucerene.  She has a cute gift shop I want to see if she has these colorful fish she gave to Christine.  They are beautiful!  Also, there is a gift shop in Kelseyville that everytime I go there it's closed (weird hours).  So maybe I can go there too and it will be opened.  Cute stuff in the window.

Today is a down day and I will rest at home.  I have a house keeper coming because I can't do it anymore.  I don't have the strenght.  See things have changed and it hurts that I can't do the things I did before.  But my health is more important.

Have a wonderful day and remember to make moments that take your breath away!

GO GIANTS!!!!

Love,
Debbie

Awesome Weekend!

What a great weekend at the lake.  The weather was so hot but I have A/C in my little trailer so I was so comfortable.  Mark went and played at his favorite spot (casino) and I just laid around reading, watching movies, visiting with friends.  I love walking my little puppy around especially in the morning before the sun comes up.  The sun rise is so beautiful.  It is my favorite time of the day.

Yesterday was Father's Day and Mark and I got to watch our grand kids for a few hours.  I'm so amazed how much Little Markie is talking.  He watered plants with Papa and then came to me and said he was tried watering and wanted milk.  He reminds me so much of my son, Mark.  Yesterday Mark took him to the Parents and Puppies ice skating session.  He told me "I did it Nana".  He said the ice was cold and slippery.

Little Markie loves to help.  He helps me weed and helps his Dad wash the car.  Papa is so proud of him.  Here he is washing his little car.

My little girl is growing so fast.  She is crawling, well going backwards, sitting up and rolling over.  Trouble begins now.  Erin said soon we will be able to get her ears pierced.  Nana gets to buy her first diamond earrings.  She loves jewelry.  She grabs my necklaces and bracelets all the time.  I told her Dad he is in big trouble with her.  Six months old.  I'm so blessed to have this time with them. 

No side effects yet from the second dose of Cytoxan.  Just alot of problems with my GI tract.  Dr. Dana said this is the chemo and steroid.  It could be the amyloid in the stomach and colon but she said as time goes on and if the amyloid increases in these areas I will have problems.  I asked her about meeting with a dietitian but she said with the drugs I take it wouldn't help.  Besides I watch what foods effect my GI tract and try to stay away from those.  It's funny reading the labels on my chemo and other drugs say the same thing "can cause nausea and ......."

Funny!!!!  Oh that is what happens in the middle of the night!!

Have a wonderful week and remember every moment is a gift!  I am so rich and full of gifts!!!!!

Love,
Debbie

Going to the Lake

Mark is so funny.  He didn't want to go to the lake this weekend.  He wanted to stay home and do yard work.  YUCK!  I said its going to be over 90 degrees.  Let's do it next weekend.  So we are off to the lake!

I know it will be hot up there but I have A/C in the trailer and I will enjoy relaxing in my little place watching new movies I got.  Friends are coming up so we will be relaxing and enjoying the moments.

Mark and Erin took the kids to Monterey to see the aquarium and today on their way home they are taking them to the Oakland Zoo.  Mark said little Markie loved the fish.  Their hotel room walked right onto the beach and Markie played in the sand and water.  He loves to play in the sand.  When he is here with me at home we play in his sand box for hours.  He yells at me to "dig Nana".  We make mountains and sand castles.  So much fun!  My little girl is starting to sit up, roll over and Daddy said she even is trying to crawl.  Oh boy here comes trouble! 

I start my second round of Cytoxan today for the next 5 days.  Higher dose so we will see how this effects me.  I'm really sore today from the Dex and Velcade this week but that is normal for Friday.  So far my blood counts are doing good and hopefully this will stay that way.  I just have to stay healthy.

Lots of good things are coming my way and it finally feels great.  I'm adjusting to less stress and good people in my life.  Mark and I are enjoying every moment with our family and friends.  Life is good.  I just wish my health was good but I'm still fighting and will never stop.  I have too much to live for.

So I'm off to my little trailer at the lake.  The minute I enter those gates my body goes into relax mode and total peace.  Can't wait to get there!

Enjoy every moment!
Love,
Debbie

Had A Wonderful Weekend!!!

This past weekend was so relaxing!  Mark and I went to the lake on Friday.  The weather was a little cold on Friday night with the wind blowing.  We had dinner and then went to bed early and listened to the wind blowing outside.  The next morning it was beautiful!  The sun was bright on the lake and the wind was gone.  We went to Lakeport to visit with friends and I went to my favorite store - The Dollar Store.  I can't believe I can get 5 gallons of water, car wash, grill cleaner, sponges 3 packages, 3 room fresheners, 2 bottles of Windex, pastry brush, 2 big bottles of bubbles for Markie all for $19.00.  I love that store.  Came back to the trailer and sat outside on the patio watching a chipmunk eat all my bird feed.  What a little piggy?  There was no one at the lake and I like it that way.  I can walk Mia around and not worry that someone will get upset.  Watched the giants win and the Stanley Cup Finals.  Mark and I had dinner and it is so funny.  We both eat and just want to hang out and do nothing.  We watched a movie and then went to bed.  Yesterday was Laura's, my nephew Anthony's fiance's bridal shower.  Lots of fun!  They are so sweet and I can't wait for the wedding in August.

Hailey 6 months old

This week is second round of Cytoxan at a higher dose.  With the disease spreading to other parts of the body I have to do whatever I can to stop this.  I want more moments!  Spending time with my grand children keeps me fighting!

Enjoy every moment!

Love,
Debbie

HOPING TO FEEL BETTER SOON!

These past few weeks have been rough.  I did have the flu and the reason why I know is because several friends at the lake came down with it too.  I think I'm over that.  I started chemo again this week and feel the same side effects as usual (nausea and soreness and really tired).  My white cell count is going down and that's why I feel tired.  I start second course of Cytoxan next week and dose will increase to 250mg.  We'll see if I feel any side effects with the increase of the dose.

Yesterday I spent most of the day at the hospital.  I had a 9:00am appointment with nuclear imaging to inject radio active dye into my veins which will go to my bones in order to perform the bone scan at noon.  Then it was off to chemo and back to nuclear imaging.  The bone scan took about an hour but the nurse said the doctor wanted to review the images before I left.  Moments later she said that the images showed abnormal findings in my head and that I had to do skull xrays.  I thought what is this about.  So off I went to xray to do the xray on my head.  I left the hospital and 10 minutes later Kaiser was calling saying the doctor wanted more xrays and to come back ASAP.  At this time, I'm feeling so stressed.  I hadn't eaten and it was 3:00PM and all I wanted to do was go home eat and go to sleep.  I was so tired.  Later that day the foot doctor called to say the broken foot was confirmed on the bone scan and to keep wearing the boot for 4-6 weeks.  Then he said I'm not an expert in the field to discuss the head findings but from what he read it look normal.  Thank God.  So I came home and received an email from Dr. Dana who said that the CMV test was negative.  That's good too but there's still one more test she is waiting for to confirm what exactly is going on.  I asked her to look at the report of the bone scan and she also said the abnormal findings were normal and in her words it made me laugh "basically you have a thick head".  Mark laughed and said he could have told the doctors that without a bone scan.  HAHA!  So now I wait for the other test Dr. Dana ordered and see what the next step would be.  I did receive the results from the biopsies from the colonoscopy.  It confirmed Amyloid in the colon and that is most likely why I'm having so much trouble with the stomach and colon.  Nothing they can do and continue treatment.

This weekend its off to the lake.  So excited.  I need to rest and relax.  This has been a very stressful 2 weeks.

Have a wonderful day and enjoy the moment.
Love,
Debbie

Still Sick!

Thought I was over this but last night was a rough one.  I almost went back to the hospital again but by 5 this morning the vomiting stopped.  This has been the worst.  I ache all over including my ribs from vomiting so much.  Hopefully tomorrow will be a better day.  All I have done this week is lay in bed at the hospital or my house.  Spoke with Dr. Dana about the flu and she has also ordered a CMV test just to be sure I have not developed this after transplant.  I was negative and Jazmin was too.  So on Monday when I go to do lab work for chemo I will also take this test.  I should know by next week.  If it is positive, Dr. Dana said she will treat it immediately.

Staying home this weekend to get some things done here.  Mark wants to prune some of the bushes and trees around the property.  My roses are blooming and they are beautiful.  I love spring and summer.  I planted (Mark did) 6 different tomato plants and I can't wait to start cooking and eating them.  I have been trying different panzenella salads and I know once my tomatoes are ripe they will be great in this salad.

I wish I felt better.  This is so hard to deal with.  I missed my chemo treatment this week after receiving the news that my numbers went down to 101.  I hope missing this week doesn't raise them.  That would be disappointing!

I also missed seeing my grand kids this week.  I miss Little Markie so much.  He is so cute and we have so much fun together.  He loves reading his books and will sit in his bed looking at all his books.  Nana Salvato is bonding with Hailey and she loves her Noonie.  Hailey is smiling and cooing.  She is so sweet.

Well hope I start feeling better and maybe I can see my grand kids this weekend.  Have a wonderful weekend.

Love,
Debbie

Just out of the Hospital

Just got out of the hospital today.  I was so sick these past few days and finally Kaiser admitted me.  I must have been around someone who had the flu and of course I get it.  I was so dehydrated.  The doctor ordered a full colonoscopy too after the last visit to the hospital.  Everything was good, thank you.  He did take a few biopsies to check for amyloid and I will know the results in a few weeks.  I have a feeling the disease is in my colon because of all the problems I have been having and the doctor said a part of the upper colon was thick.  What can I do?  All I can do is continue my chemo treatments and hope and pray that no new deposits will form.

I had a wonderful 5 days at the lake.  I rested and just enjoyed the quiet time.  The weather wasn't great but who cares.  I sat in my little house watching TV and visiting with friends.  The park was so quiet, not too many people.  Just the way I like it.  Mark got me a beautiful heart shaped plant stand and filled it with a beautiful orange and yellow cactus.  We figured if we are not there for a few weeks at least maybe the cactus will survive.  I look out my sliding glass door and see the beautiful heart shape.  I love it!

Well I'm going to rest since I got no sleep last night.

Enjoy these precious moments!
Love,
Debbie

Not a Good Day - I Think

Well today was not much fun.  I went to chemo and the nurse noticed my left foot was swollen.  So she called the doctor who was not happy that I have been this way for a month.  So next thing I know I'm in xray and the foot doctor.  "Broken left foot" "Removable Cast for 6 weeks"  Great!  Also, the foot doctor scheduled a bone scan because taking the steroids causes broken bones (small ones) and he just wants to be sure there are not other broken bones anywhere else.

Feeling nausea now.  Stanford tells me to take dex at night and Kaiser said in the morning before chemo.  So today I took it in the morning and by this afternoon I'm sick.  Hopefully will be gone by Wednesday.  I hate feeling sick.  Monday night was not a good night.  I was told that my white cell count is going down and the platelets too.  So I'm feeling soooo tired.  I fell asleep last night and never woke up till this morning.  Today I'm wired from taking the dex this morning, which is good cause I want to watch the finale of Dancing with the Stars.

Leaving Thursday for 5 days at the lake.  I'm sooooo excited!!  All I want to do is watch movies, sit by the lake, walk my puppy a little, visit with friends and eat all the good stuff I'm planning.  Can't wait!

Have a wonderful weekend and make those moments precious.  That's exactly what I'm going to do!

Love,
Debbie

Update on New Chemo Treatment

Yesterday was my first day on the new chemo drug, Cytoxan.  I took another dose this morning.  So far no evidence of side of effects.  I did speak with the oncologist pharmacist about the side effects.  She said as far as she knew no one has complained of any bad side effects from the drug.  She said that the hair falls out when on the drug via infusion.  Infusion is a heavier dosage.  Although as my dosage increases there could be a possibility of losing my hair.  So today I'm going to cut the side shorter and go with a new look.  The main concern everyone has is the bladder problems.  So I'm drinking lots of water and going the bathroom lots.  Not sleeping very well the past few weeks but hey with all this on my mind who could.

I just hope and pray this works.  I need to have my numbers down to 26.  Everyone asks how long on this new treatment.  Well all they can say is that for ever long it takes to get to 26 and stay there.  So I guess that means they don't know.  Still having flutters with the heart but I am under so much stress dealing with all these new developments.  I am so blessed that each day I'm here making precious moments, but I have to say its hard.

Wishing you a wonderful day filled with precious moments.

Love,
Debbie

The Pixie Look

My new look until my hair falls out.  Also, need a new pair of earrings - diamonds would be fine!!  Starting new chemo treatment on Tuesday called Cytoxan.  Hair will fall out but they say around the 4th week of treatment.  I will take 1 pill for 5 days once a month.  Wow it must be strong if I only take it for 5 days but let's hope it kicks butt on the Amyloid.  I have to get to normal range which is 26.  I am at 114 now.  I will do it!  I'm still fighting!!!!

I have lots more moments to live!!!

love,
Debbie

Update on New Chemo Treatment

Spoke with Dr. Akhtar yesterday.  He has ordered the new chemo treatment Cytoxan for Tuesday.  I did get some good news.  I only take it for 5 days a month and then off for 3 weeks.  I will be still taking the Dexadron and Velcade every week but that was good news.  He did say the side effects did include hair loss, so next week I'm going to start cutting the hair shorter and shorter.  I think I'm going to go with the Halley Berry look first.  It should take about 4-6 weeks to lose the hair entirely he said.  The other issue is bladder problems.  The chemo drug really puts alot of stress on the kidneys, so they will be monitoring my kidneys along with all blood work.  Dr. Dana called and said that she wants a special immune system blood test done after each treatment because it reduces your immune system and so does Cellcept that I take 2,000 mg a day for the heart transplant.  She said if the immune system goes down too low, she will reduce my intake of Cellcept to 1,000 mg.  Wow this is so much to handle.  My everyday life is maintaining my body and just trying to feel good.  That means physically, mentally and emotionally.

I hope and pray if you are reading this post that you STOP and really look at your life.  Where are you going?  How do you spend those precious moments?  Life is not all about what we gather but what we scatter!  Go out and make a difference in your life and someone else's.  Remember "Every Moment is a Gift"!

Today I get to spend precious moments with my little grand daughter, Hailey.  I enjoy every moment I spend with my grandchildren.

Have a wonderful day!
Love,
Debbie

Hailey 5 Months

Hailey Lee Douglas

5 months old

Brother Markie calls her "Hailey Bug"

NEW TREATMENT PLAN

Yesterday as I said in my last post was D-Day.  Met with Dr. Schrier at Stanford.  He is the specialist for Stanford in the Amyloidosis Center.  He was not happy about the recent results of my heart biopsy where one sample showed signs of the disease.  I know now where it is located but how much and if there are any other spots we will never know.  He also felt due to these recent results that my lambha light chain count at 114 is too high and wants me at normal 26.

So here we go.  I'm staying on Dexadron and Velcade every week.  The new treatment is a more agressive chemo, which is the same as I took during stem cell transplant.  This is called Cytoxan.  I will be taking it by mouth every day.  I start out for the first 5 days 200mg and on the 6th day I will take lab work to be sure my white, red cells and platelets are ok.  If so, the dosage goes up to 250mg for the next five days and again on the 6th day, check labs and if ok up the dosage to 300mg.  Dr. Schrier wants to get me to the highest dosage my body will handle and keep me there for 30 to 60 days until the count goes down.

Side effects are not fun.  The same as the stem cell.  Hair loss which I don't care.  I want to be healthy and protect my new heart.  I want more TIME!  Neausa, mouth sores, fatigue, all the normal side effects from chemo.  I will also have the same chemo effects I suffer now from the Decadron and Velcade on top of all these new ones.  I just want to feel good and I so afraid now that this is going to knock me down good.
I'm so scared!

Well this new treatment should start next week and I will update on my progress.  I have also contacted heart transplant with the new treatment and wanted to know about future treatment of the heart.  I think I will be doing heart biopsy every 3 months instead of 6.  I will see what Dr. Dana says today.

I always think about how blessed I am.  I have a wonderful husband who loves me and takes very good care of me.  He just wants me to be happy and does everything he can to be sure I'm happy.  I love him so much.  My sons, daughter in law and grand kids are my world.  I look into those babies eyes and hope and pray I will be here to see them grow up. Then there is my Mom.  What can I say.  She has been through hell with me.  Seeing her daughter go through a heart transplant, chemo, stem cell transplant and all the other treatments and now this.  My brother and sisters are always pushing me to be strong and fight.  Then there are my friends.  We have such dear friends, too many to list but they are always here pushing me too to fight.  My donor family, Evelyn, Ben and the girls blessed me with the most wonderful gift and I thank and pray for them each day.  They will always be apart of my life.  Forever!!

So, remember every moment is a gift!!  Go out and make moments that count.

RIP Auntie Josie.  We all love you!

Love,
Debbie

HAD THE BEST WEEKEND EVER! TODAY IS THE D-DAY!

    This weekend was the best ever!  I spent 3 nights at the trailer.  The weather was perfect, not too hot.  We spent Sunday night too and came home at 7:30AM on Monday to watch my grand children.  Mark was working in San Francisco that night and didn't have to go to work until noon.  We had dinner on Saturday night with Bob and Cindy Keyes.  Bob BBQ his yummy chicken and I made my roasted onion red potatos.  It was soooo good!  On Sunday my sister Kathy and Ed came to visit and had dinner with us.  Sissy and I sat and looked at my new Foodnetwork cookbook that I love!  It was a very relaxing weekend.

But as my life has been going.  Today is D-Day.  Appoointment at Stanford at 3:30PM with Dr. Schrier.  Due to the recent results I have no idea what he is going to do.  I know one thing I'm going to ask to be on chemo everyweek.  I supposed to be off next week but I don't want to.  I have to be aggressive in fighting this disease.  We will see what he has in mind.

My heart has not had those heavy palpapations in the past few weeks but just little ones.  I have cut out caffained coffee and trying to have less stress.  So we will see in the next few months but heart transplant is saying that I will have to have heart biopsy every 3 months now.

Today is Tuesday and its nausea day.  I'm not able to eat much except cream of wheat.  Then of course by tomorrow the soreness and fatigue start and that lasts until Saturday.  Staying home this weekend and celebrating Mother's Day with my mom here.  The grand kids are coming over to visit and have dinner too.
It will be a fun day!

Last Friday, I was a model again this year in the Go Red Dress for Women and the American Heart Association.  I had so much fun.  I saw old friends who are heart surviors and met new friends.  I took Mom too and she love it.  On May 17th, Mom and I are going to a dinner presentation at a winery to hear Dr. Jeffrey Wolf from UCSF talk about multiple meloluma.  Although I don't have that, he is also a specialist in Amyloidosis and treats some of my support group friends.  It should be interesting and its FREE!

Happy 5 month birthday to my little Hailey.  Markie calls her "Hailey Bug".  She is getting so cute.  I had her chuckling yestereday.  She smiles and coos now and is trying to roll over.  Yesterday was a good day.  My niece Shannon and her baby boy Cashious, Brittary and Daniel (Brittney is due in August) came to visit Mom and I.  We had babies every where.  It was fun!  Little Markie was playing hockey with Cashious and was trying to check him.  Funny but not a good idea.  These are the moments that I'm living for.

Well its time to get ready to drive to Stanford.  Will post results of doctor appointment tommorrow.

Every moment is a gift!  Go out and make those moments count!

Love,
Debbie