Wednesday, October 16, 2013

It's Been A While!!!

Yes, I know it's been a while but just didn't have it in me to write about all that has been going on.  But the past few weeks I realized its time and I need the mental relief to get things out.  So here it goes!

The last post looks like it was in March when the family went to Lake Tahoe for our yearly trip.  As you can see it was the best!  Waking up each morning to Markie and Hailey running in our room and getting in bed with Papa and Nana.  What a moment!

To speed up to what has been happening.  As for my health, all is steady.  My numbers are really low at 34 which normal is 26.  The second chemo I take each month really does it but wow it really does me in too.  This week is not a good week and all I feel like doing is crying.  I'm sore, tired, sick and everything else in between.  It sucks!!!  But its working and I celebrated my 5 year since heart transplant.  I went down to heart transplant on October 1st for all the big tests for two days.  Dr. Dana performed the procedures and she said the heart is "PERFECT"  I already knew that.  All is good and I won't have to go back for a year unless I'm having problems.  I'm so blessed to have been given this gift and living 5 years longer.  I do not take anything for granted and appreciate my life.  Mark and I have learned to live simple and it is so freeing to live this way.  I wish we would have done it a long time ago.  Stress kills and I live my life with little or no stress as possible.  It is not good for my treatment and I have to keep fighting this terrible disease.  So as for the heart and the disease everything is good news!

Kevin Anderson, as many of you remember, is the doctor who had a heart transplant and has the same disease.  He just published his book "The Middle of Infinity" and I am in the book.  I love reading it but have taken it very slow.  It puts me in that space when I had the heart transplant and stem cell transplant and reading about the things he went through brings back too many things.  I don't want to say they are bad or good cause some were both.  Its just hard to put yourself back in that space.  I can't even go back on this blog and look at the early posts from 5 years ago.  It just hurts!

Now let me talk about the most important people in my life:

Mark and Erin are doing wonderful.  They just brought a new home in Rincon Valley.  Beautiful home in a cul-de-sac with built in pool and spa, big backyard for the kids, quiet street and most importantly the right schools and of course Rincon Valley Little League.

Markie will be 4 in April.  He is going to pre school and loves it finally.  It took a few weeks of him taking 4 minutes to say goodbye to Daddy but now he could care less.  He still loves to watch all kinds of sports including football, hockey and baseball.  He truly has taken after his dad for his skills.  He plays hockey with 16 year olds and scores on them with no problem and he loves to play baseball with me.

Hailey will turn 2 in December.  What can I say but she is truly a little bug.  Very petite in size and just loves to look at all the jewelry I wear.  She walks around with her bracelets on her arm holding her purse and baby.  She is a girlie girl just like her mommy.\

I'm so blessed to have lived long enough to share this moments with my grand kids.  It is the BEST!

Ok next is Matthew.  What can I say.  He is a gem.  He is my gentle soul who takes care of me.  He is very successful and enjoys life to the fullest.  One thing he has learn from me is to do it now, don't wait.  I'm blessed to have had the opportunity to travel before I found out I was sick.  I have so many wonderful memories of Italy and the other counties I traveled to.  Just sad that I won't be able to go back.  I don't do well traveling long distances on a plane.  Matt is living in San Francisco but will be relocated to Los Angeles.  I'm really trying to get him to move here.  I would love it!

We just spent 5 days in San Diego with Maxwell.  Had a great time.  He is going to school full time and working full time.  He is loving life.  He lives with his friend Brian from hockey and his girlfriend Christina in a beautiful condo.  I spent each day cooking his favorite meals like ham and scalloped potato, pasta and chicken parm.  We went to dinner and Max took us to Coronado for a wonderful lunch on the ocean.  It was a perfect 5 days.  Miss him so much but feel better knowing he is doing just fine.  Mark and I took him out shopping for a new comforter and sheets for his bed.  He is really into the inspirational sayings like I have all over my home.  He picked out two new ones for his room.  I love it love it!

Nana is doing great.  She has her pains from time to time.  We enjoy each other's company and do a lot of things together.  I don't know where I would be without her and I pray to God she is here for a long time because I need her.  I feel so sorry at times for what I have put her through.  Watching your daughter go through a heart transplant, stem cell transplant and the 100+ heart biopsy.  She is tough and I need her strength to keep fighting this disease.

Mark is doing great too.  He and I can't wait for him to retire.  He hates the commute.  Its really getting to him.  Lately, like tonight, he has to work nights.  It is so hard on him.  I wish he could retire now.  Its just the medical expense that keeps him there until he can get Medicare.  So in the mean time we wait.  He has been very busy this summer with repaints which is good and bad.  Good for the extra but bad for what it does to him.  He's 63 and needs to slow down but that won't happen anytime soon.

Mark built me a pizza oven for our anniversary in April.  I love it.  It has taken a while to get use to cooking pizza in it but wow the pizza is soooo good.  My backyard is my peace.  I love what Mark has done.

Haven't been to the trailer in a few weeks and won't be going for awhile.  This weekend is our Salvato family reunion in San Bruno.  I am really looking forward to that but I probably won't be feeling very good but I'm going.  My Mom will be the oldest Aunt there.  She cannot miss it.

October 27th is our big Steeler and Raider party.  Our neighbor (tenant in the big house) Nancie and her friends are Raider fans.  All though the night we interviewed her she looked around our house and said her favorite team was Steelers HAHA.  She is an RN and watching over me.  She has been a god sent.  We had the first party last year and it was a blast.  So this year its pizza and my homemade ravioli lasagna.  Can't wait!  Nancie also brought a trailer in the same park we have ours.  Her boyfriend Steve and her are there which makes it so fun.  We have became a family and it feels good to have them close by.

Well hope this wasn't too wordy but I needed the time to get things out.  My family has been so upset that I have not posted for a long time.  Next come pictures.

Enjoy every moment because every moment is a gift!!!

Love,
Debbie
 
My Little Bug Hailey

 
So Proud!  My Nephew Anthony was awarded "Apprentice of the Year in Sonoma County"

 
Little Markie playing in their pool

 
What can I say!  My two boys Maxwell and Matthew about to go out together on the town.

 
My silly grand kids

Tuesday, March 26, 2013

Lake Tahoe Vacation with My Family



So many beautiful moments with my family!  I'm enjoying every moment!
 
 
 
Love,
Debbie

Tuesday, February 26, 2013

Sick Again!

My results from the chest x ray on Friday showed pneumonia in the right lower lobe and collapse of the lung on left side.  That is why I'm feeling so sick and have so much pain.  Dr. Akhtar finally gave me stronger pain meds and hopefully it starts to work.  I'm having a hard time breathing.  We had a long talk today and decided that until the pneumonia is gone for good he is telling Stanford I do not want my Cytoxan increased to 350mg.  My body cannot take it anymore.  The pneumonia could be drug (Cytoxan) related and not from a cold or cough.  I'm not sick in that way but feeling fatigue and in a lot of pain.  My body is saying "ENOUGH"!

I don't even know if I should watch my grand kids on Thursday.  Mark's Mom is visiting and hasn't seen the kids.  I told Markie lets see how I feel and how they feel.  Hailey had a fever today but they think it was her teeth.  I can't take the chance and he knows it too.  Just have to wait and see.  I miss them so much.  I didn't have them last week because Markie had a cough.  Nonnie and I want to see them this week hopefully.

It is going to be a beautiful weekend and I'm hoping to go to the lake.  Jeff and Christine are going to put their boat in the lake and maybe if I'm feeling good I can go for a boat ride.  Just being there makes me so happy.

Please say prayers for Kourtney and Brenden and the little twins.  I hate this so much because it brings back awful memories.  I just hope and pray them will be ok. 

Make time to enjoy the simple things in life and above all... make every moment count.

Love,
Debbie

Monday, February 25, 2013

It Was A Mystery

The last four months I have been experiencing pain in my chest lung area.  This time it happen last week and it is really painful.  Of course, the first thing I think of is my beautiful heart.  Am I having a heart attack or is the heart rejecting?  What is it?

My tenant and to be honest new friend is a nurse.  Nancie and I were talking about how each month since November I have had this pain.  She is so in tune with my health issues and I thank God she is so close.  The pain according to the specialist Dr. Shaprio is plurecy or inflammation of the lining of the lung.  Nancie kept saying "you keep getting it right after finishing the course of Cytoxan".  So this time she was right.  I finished Cytoxan on Tuesday and by Thursday I am in so much pain.  Mom and I spent 5 hours at Kaiser on Friday doing lab work, x rays and seeing doctors.  I told the doctor what Nancie had said, "is this a side effect of Cytoxan".  She did not know but called Dr. Sharpiro and together they review the side effects of Cytoxan and found that 1%, yes one percent, of patients experience plurecy pain after taking Cytoxan.  Guess who the 1% is? ME!  I think what happen is when Dr. Schrier increased my Cytoxan dosage from 250 to 300 or the chemo is building up in my body.  So I'm on antibiotics and another steroid until I start Dexadron tomorrow.  I have to talked to Dr. Schrier about what has been happening and how we can change it.

After all that, I got lamha light chain count and it is at 48.  That is incredible!  I have to get to 26 which is the normal range.  I'm hoping Dr. Schrier will be happy about the 48 and think about cutting back on my treatment.  He was even thinking about increasing the dosage again to 350.  With this new development I don't want to do this.  We will see.

Next month is my six month checkup with heart transplant.  Good news is that I don't have to have a heart biopsy.  The heart biopsy will only be once a year on anniversary date. 

I had to cancel my Vegas trip which to be honest I was so happy.  If I would have gone this past weekend I would have been is so much pain.  Not much fun.  Next month we have the trip to Lake Tahoe with my family.  I'm so excited.  Little Markie talks about going to the snow all the time.  It will be so much fun!

Please pray for Kourtney and Brenden's little babies.  Kourtney is 29 weeks along and she is in UCSF now.  They will not let her go home because the baby boy is showing signs of stress.  I'm so glad because she is in the right place.  She will most likely stay until the babies are born.  The little girl is doing good but they are tiny.  Please say prayers!

So true!  Every moment is a gift!

Love,
Debbie

Wednesday, February 20, 2013

Another Sad Day

Rest in Peace Uncle Mike
 
Uncle Mike was my dad's first nephew and to be honest was the same age as my dad.  He passed away yesterday from a heart attack.  So sad!
 
My thoughts and prayers are with his family.
 
Another angel in heaven.
 
Love,
Debbie

Saturday, February 16, 2013

Yesterday and Tomorrow

 
Are these words true!
 
 
The last few months have been extremely hard.  I have been sick every week with either the flu, a cold or a cough.  So I made a decision to cancel my trip to Las Vegas next weekend.  I'm sad but it's the right thing to do at this time.  I don't want to go and get sick.  I'm so scared because every time I have gotten sick it comes on quick.  So I plan to spend a relaxing weekend at home.
 
This week I took Velcade and Dex on Tuesday.  I started the monthly course of Cytoxan yesterday and will continue for the next 5 days.  I'm still at 300 mg but the increase from 250 to 300 was definitely a change.  Dr. Schrier wants to push it up again to 350 mg.  I will be taking my labs on Monday to see where my numbers are and he will decide then.  I hope and pray they have come down or at least stayed the same.  I'm so scared to go up on the Cytoxan to 350.  I know it will kick my butt.  I just want to feel better.  I just have not felt good in months.
 
I'm really looking forward to going to Tahoe next month with my family.  The Kent house is beautiful.  I hope I can do this every year.  The moments are so special.
 
Have a wonderful weekend!  Follow your dreams!
 
Love,
Debbie

Tuesday, February 5, 2013

What Makes Me Happy!

 My Little Hailey Bug
 
 
Markie and Addison at the Super Bowl Party
 
 
My grand kids make me happy!  I continue to fight for my family!  I want to spend every moment I have making moments that take my breath away.
 
Don't count the minutes, count the laughs!
 
Love,
Debbie