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