Thursday, May 31, 2012

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

Tuesday, May 29, 2012

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

Tuesday, May 22, 2012

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

Wednesday, May 16, 2012

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

Saturday, May 12, 2012

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

Thursday, May 10, 2012

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

Wednesday, May 9, 2012

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

Tuesday, May 8, 2012

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