Thursday April 21, 2011

Just heard from my stem cell transplant coordinator with my appointment schedule.  Here it is!  I am so happy to know!

5/9 and 5/10   Extensive appointments including bone marrow biopsy,  placing subclavian line, and tests to get baselines on everything from eyes, sinuses, heart, lungs, etc., and possible PET scan.

5/11   Sign consent forms

5/13  Begin Busulfan protocol  (they will administer the drug to me and then take blood samples several times that day to determine what protocol I will be in.  This drug is a chemo conditioning drug used for stem cell transplantation patients.)

5/17  I will be admitted into the hospital

5/23  My donor’s stem cells will be collected

5/24  Transplant day for me!  My new birthday 🙂

Wednesday 04-20-11

No news yet about my appointment times, other than a tentative date of May 16-17th for “collection” of my donor’s stem cells.  Which means my transplant will take place May 16, 17 or 18th, depending on airline flights that the stem cells will be flown to Houston on.  (Stem cells donated through the Registry can not be frozen.)  My donor is in the process of making his appointments.  That means I will probably be in Houston the first week of May.  I will keep you all posted!  Meanwhile I have been busy trying to get ready to be gone for several months.  And going to the Doctor in Amarillo.  Yesterday my blood work wasn’t too pretty, so I am back on the Neupogen shots.  Can not get sick now.

Meanwhile, I have been downloading some music to take with me which made me start thinking about all the concerts (vintage!?!) I have been to.  Or at least all the ones I can remember!  Since it’s about time for a random post,  here is my list!

  1. George Harrison
  2. Ringo Starr
  3. The Rolling Stones
  4. Bob Dylan
  5. B B King
  6. Linda Rondstadt
  7. Robert Plant
  8. Three Dog Night
  9. The Guess Who
  10. The Doobie Brothers
  11. Leon Russell
  12. The Beach Boys
  13. Roy Orbison
  14. The Eagles
  15. Van Halen
  16. Aerosmith
  17. Boys 2 Men (Hahaha!  Took teenagers!)

Friday 04-15-11

To all of you who left beautiful comments, thank you so very much!  It is your love, friendship, and support that keep me steadfast on this journey.  From the bottom of my heart, a big big big thank you, richest blessings, and lots of love!  Holly

Wednesday 04-13-11

HERE IS MY MOST HAPPY, WONDERFUL NEWS:  MD ANDERSON HAS FOUND AN UNRELATED DONOR MATCH IN THE NATIONAL MARROW REGISTRY!!!!! This person has agreed to be my donor and has already returned the extensive HLA blood test to MD Anderson, and is ready to make appointments to proceed!  My sister has not been able to get a diagnosis on her health issues, and therefore is not a suitable donor.  We waited to see what her Doctor said at her appointment Monday, and it is now obvious that we can not wait any  longer even though she is a perfect related match.  My health has been rapidly going down the tubes the last couple of months.  Right now I don’t know much except that it will probably happen in about 3 to 4 weeks.  Yesterday I received a red blood transfusion, and have recently had alot of neupogen shots, so I am feeling pretty good right now.  Dr. Ravipati in Amarillo will just do support care until I get to Houston.  My transplant Dr.’s PA told me this morning that I will have a bone marrow biopsy as soon as I get down there, and if my blasts are good, we will proceed.  If the blasts are too high, I may have to have treatment first.

I honestly can not describe the feeling that there is a complete stranger out there that is so totally willing to do whatever is necessary to save my life.  Thank you Jesus!  You have answered my prayers!

 

Tuesday 04-05-11

Authentic Anchor Bar Buffalo Chicken Wings

 

This is the original spicy Buffalo chicken wings recipe from the Anchor Bar in Buffalo, NY.  You can adjust the heat by adding less or no cayenne and Tabasco for mild wings, or more for more heat.

There are many Buffalo wing recipes, but this is supposed to be the original, except in the original recipe the wings are deep fried.  The hot oven works beautifully!  I had to use more flour, and had to double sauce to have enough.

 

Ingredients:

36 chicken wings pieces (one wing makes 2 pieces)

1 Tablespoon vegetable oil

1 teaspoon salt

1 cup flour

1 1/2 Tablespoon white vinegar

1/4 teaspoon cayenne pepper

1/8 teaspoon garlic powder

1/4 teaspoon worcestershire sauce

1 teaspoon Tabasco sauce

1/4 teaspoon salt

6 Tablespoon Louisiana hot sauce (Frank’s is the brand used in Buffalo)

6 Tablespoons butter

 

celery sticks

blue cheese dressing

 

Preheat oven to 425 degrees.

 

1.  If necessary cut the wings into 2 pieces.  In a bowl toss the wings with the oil and salt.  Place into a large plastic bag and add the flour.  Shake to coat evenly.  Remove wings from the bag, shaking off excess flour. I did this part in 2 or 3 batches and had to use more flour.  Spread evenly on oiled or sprayed foil-lined cookie sheet(s).  Do not crowd.  Bake for 20 minutes, turn wings over, and cook another 20 minutes or until the wings are cooked and browned.

2.  While the wings are baking, mix all the remaining ingredients for the sauce in a pan, and over low heat bring to a simmer, stirring occasionally, and then turn off.  I ended up doubling the sauce in order to have enough sauce to coat the wings.

3.  After the wings are cooked, transfer to a large mixing bowl.  Pour the sauce over the wings and toss with a spoon or spatula to completely coat.

 

These are always served with celery sticks and blue cheese dressing on the side.  We aren’t blue cheese people so I made homemade Ranch dressing and it was great!

 

Serves 6, about 6 pieces per person.

 

 

 

Monday 04-04-11

Had a great weekend.  We celebrated Wade’s birthday yesterday with a cookout and all of our family here!  It was a fun day.  Happy 49th Wade!  Hehehe!

I’ve had 2 doctor’s appointments since my last blog; on last Friday Dr. Ravipati told me she had consulted with Dr. Garcia-Manero in Houston about me continuing the Revlimid chemo with my white count so low.  He told her I really needed to stay on the chemo, but I think she disagreed.  The good part of that appointment was that she prescribed neupogen injections for me so that Wade can give them to me at home.  So I did not have to make the daily trips to Amarillo over the weekend, and I have to admit that Wade gives the shots really well!   I still have one round (3 shots) in the frig.  Yay!  And a sharps container in my house.  Weird!

So today I had another appointment with her to check my blood counts, and she told me to get back on the Revlimid tonight.  I am not thrilled at all, but I tend to agree with Dr. G-M.  This is why:  my counts are gradually becoming worse due to the progression of my disease.  He wanted me on the chemo to try to keep me stable until transplant time.  And today I have a new problem….my platelets are very low and Dr. Ravipati is going to do a smear to see if they are clumping whatever that means!  I always have had good platelets except during my chemo last fall.  Curses!

Homemade pizza tonight…yummy.  Tomorrow I will post the original recipe for the buffalo wings from the Anchor Bar in Buffalo, NY.  We had them yesterday during the party and they were the BEST!

Have a nice evening!