Thursday June 30, Day +37


Today I got the results of a blood test that was done 2 weeks ago that tells the percentage of my immune system that is my donor, and the percentage that is still me.  It said that my donor is >99%.  Yay!!!  The donor cells should fight my remaining cells to get rid of any remaining disease.  Our goal by the end of my 100 days  as an outpatient is for the donor to be 100%.  So things are looking pretty good!

This evening Wade and I are going to the Museum of Fine Art.  I’m looking forward to it…something new for us!  Hope your evening is good!                                                                                                                                                                                                                                                       Wade and Haley

Tuesday 06-28-11 Day +35

It’s been a good day!  Haley found her wedding dress and got it to Mr. Santos to be altered and it will be ready in time.  Yay!  She is absolutely beautiful in that dress!  Another good thing is that we got a “micro-cell booster” for our cell phone service here in the apartment that has improved our service by leaps and bounds!  Those of you who have tried to talk to me while I’m here at the apartment will really appreciate this!   Healthwise, my appointment went very well yesterday with Dr. Hosing.  (Except she still won’t let me eat lettuce, tomatoes, and berries!  I keep asking!)  My blood counts are good.  Hemoglobin and platelets have gone up !!! and white count is hanging in there.  I am so thrilled.  My major issues now are trying to find something I can eat and a itchy dry rash on my upper body and head.  I’ve decided it’s just part of the process of a transplant….trying to put out little fires before going to the next.  Hopefully they will gradually disappear!  The appetite thing is the most frustrating.  I am almost always hungry, but food nauseates me, so I am still living on chocolate snack puddings, oatmeal, apples, cereal, and sometimes a turkey sandwich with a few chips.

Here is something I have been thinking about for a while.   I have had family members ask if they could send my donor a note.  I would love this!  I finally came to the conclusion to go ahead and post it on my blog just in case anyone else would like to send him a note also.  I talked to my Stem Cell Coordinator and she told me to have the notes emailed to me and then I can take them to her for her to mail.  She has to approve them because they can not contain any personal information.  No names, locations, etc.  It has to be totally confidential.  (After one year it is up to my donor if he would like to communicate with me.  This is a rule with the Bone Marrow Registry.)  She will chop off the top part of the email with personal info on it.  Here is my email address for those of you that are interested.   I think it would be so cool to send him a big packet full of thanks and cheer!

Once again, I appreciate all of your comments!  It just makes me so happy! I love reading them, and it really makes my day to hear from you.  I feel less isolated!  Thank you!  Big Love, Holly

Sunday June 26 Day +33

I am so proud to be 33 days out!  Making progress!  Wade flew in Friday night after being in Hereford for the week while Blaire was here, and then Blaire flew out yesterday morning.  We had a wonderful week together!  I hated to see her leave!  It was a very busy week at the hospital, but we managed to have some fun shopping just a little bit!  On Thursday evening Kelli and Lynzi came over and we went to Pappasita’s for Mexican food. I actually ate about 2/3 of my taco and was very proud!  The evening meal is my worst time with food.  I usually end up just having a bowl of oatmeal! Anyway, it was great to spend time with Kelli and Lynzi.  Very nice evening.  I meant to get a group picture to post but completely forgot.  Tonight Haley flies in for a couple of days to look for a wedding dress.  She and Wade are going to scope out the bridal shops and top picks tomorrow while I’m at the hospital, and then I will go with them on the final mission.  I’m excited to see her!

I’m weak today…afraid my hemoglobin might be falling.  Or maybe just one of those days!  I will find out tomorrow.

Fun Fact I just read:  MD Anderson employs 19,000 people.  Wow!

Bye Everybody!

                                                                                                                                                                                                                              Blaire and me

Wednesday 06-22-11 Day +29

It’s so hard for me to believe it has been almost a month since my transplant!  WooHoo!  Things are going very well right now.  Basically I go to the hospital for magnesium IV treatments and to see my team, and then take magnesium IV treatments at home on my days off.  And here is some great news….Blaire is here this week!  I have loved getting to spend time with her, and she has been wonderful helping me this week with my appointments!  For instance, yesterday I had a follow-up appointment with the Ophthalmologist at MDA and we waited for 3 HOURS before I got in!  Then it was another hour and a half back in the treatment rooms.  Oh my…it was ridiculous!  We did not leave the hospital until 6:30 last night!  Exhausted!  Anyway, I did get good news from Dr. Kim at that appointment.  All of the blind spots caused by tacrolimus have almost resolved.  She showed me the before and after printout and it was amazing how bad it was!  Now there were only 2 or 3 spots on each eye and she said they would resolve too.  I was so happy to hear this!  She said that it can cause complete blindness.

Today I had a bone marrow biopsy bright and early with my good friend Patti who takes care of me there.  This test will help the Dr. to know how my donor’s immune system is getting along with me.  Hopefully at the end of my 100 days after transplant, my immune system will be 100% of my donor.  Right now I am still in there with some residual diseased cells and his immune system will go ahead and fight those and get rid of them.  This is pretty intriguing to me!  I won’t get the full report for 2 weeks.

Another good thing, Dr. Hosing took me off one of my meds to prevent graft vs host disease.  I was taking 12 of these pills a day!  I have to keep a journal to keep track of all my pill taking!

Blaire and I did a little shopping this afternoon for Charlie.  He will be 5 in a few days!  I can’t believe it!  I miss my Grandkids SOOOO much!  In fact, I miss everybody!  When I really think about it, I know I don’t feel well enough to go home, but it’s a good thought anyway!  So I’m closing on that thought!  Night-night!

Wednesday June 15 Day +22

Hi Everyone!  I kind of went on a blog strike the past couple of days, not much to report.  However I do have some terrific news…..I can eat fresh food!  It has to be washed, then peeled.  So it’s basically apples, avocados, peaches, nectarines, bananas, etc.  This really made me happy!  Dr. Hosing told me I still can’t have any lettuce, tomatoes, berries, yet. Salad has not passed my lips in almost 6 weeks!  I am going to love it when I get some!  This will help my appetite.  So far I think I have lost 20 pounds since May 17th.

Yesterday I started having some new issues.  Evidently the chemo burn from the busulphan (known as the most wicked chemo out there) I took, burns from the inside to the outside.  That is why my sore throat has been so persistent.  It just has to work its way out.  This happens all through your GI tract during day 21-28.  It causes your skin to turn brown.  Strange!  This hasn’t happened to me yet.  Eye troubles cropped up too with swelling, itching, and watery but they don’t think it is Graft vs Host (rejection) disease yet.  Evidently rejection shows up frequently in your eyes.  I go back tomorrow to get more magnesium and see my team.  My blood levels were still hanging in there except for my white count, so I got a neupogen shot today.

Our outing today was to the grocery store and the sweetest little girl about 6 or 7 came up to me and told me I was beautiful!  You should have seen me in my old jeans that are now way too big and sagging, a tee shirt, hoodie, (102 outside!) and a crazy hat, eyes all swelled up! I’m telling you, it made my day!  And yes It made me happy cry!  What a little sweetheart!

Sunday June 12 Day +19

I can’t believe I am almost 3 weeks out from my transplant!  When I think about how homesick I am I actually CAN believe it!  Wade and I have been in Houston for 36 days!  We’ve had a very nice weekend with no hospital trips, and had no problems working the IV pump at home.  Sore throat is much better…things are looking up!  My main symptoms are coldness, loss of appetite, tiredness, little bit of nausea, some headaches.  I tried to drink a Dr. Pepper today for the first time and it tasted terrible!  I couldn’t believe it because I have always been a huge DP fan – it was my soft drink!  Sense of taste is just a little messed up by chemo.  Tomorrow I will go to the hospital bright and early at 7:00 and have blood work and see my team for evaluation and get magnesium (unless they decide to send more home with me).  I am ready to see what they are thinking.  It’s a beautiful hot summer day here, lots of people at the pool.  Our outing will be a trip to the grocery store later this evening.  Here is a picture of that marvelous pump that has allowed me some freedom!

Friday 06-10-11 Day +17

Today I went for my appointment to have my blood checked and get my magnesium IV and got some great news.  I get the weekend off!  They sent us home with a portable IV pump and the magnesium bags so we don’t have to go to the hospital tomorrow or Sunday!  My blood levels are still hanging in there, I needed no blood products.  But my white count has dropped and I had to get a neupogen shot.  That was good with me because I am still struggling with this sore throat and between the shot and my PA adjusting my meds, it should resolve in a couple of days.  I am a happy camper!

I’ll try to post a pic tomorrow of this little IV pump…’s pretty cool that we can do this at home!  Have a great evening everyone!