Sunday July 31, 2011 The Virginia Point Project

When Glo was here with me a few weeks ago, she caught the supershuttle back to the airport.  The van made 2 stops after she was picked up.  At one of the stops not very far from where we live the van picked up a guy that lived next door to a very unusual home.  He was kind enough to offer some information on the house, and Glo told us we should go check it out.  It is known as “the greenest house in America”.   Here are a few of the facts, and then some pictures we took.  This house is designed to give back more than it takes.  Go to www.adamsarchitectshouston.com/video_vp.html and watch the Discovery Channel’s expose on the house.

The outside structure has no wood.  It is constructed of steel, aluminum, and glass.  Totally sustainable.  The inside is contemporary and has beautiful wood throughout.

The entire roof consists of 140 solar panels.  Their electric meter actually runs backwards!

This house is the only one in Houston that has been granted a permit to convert rainwater into drinking water.  It was difficult getting the permitting done for the cistern.  Very sophisticated system.

Geo-thermal wells placed under the house provide all of the heating and cooling, along with correct placement of windows.  There are 8 or 10 wells (can’t remember!)  strategically dug 300  feet into the ground that pump water into a closed loop.

This house is so cool!

On a different note, my pulmonary function test came out great!  I scored 100%.  The technician then entered my hemoglobin count of 9.1 (a little low due to the vidaza chemo week before last), and it raised it up to 120%  WooHoo!!! Aced it!

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Thursday July 28 Day +65

Well, I got up this morning and looked in the mirror and half of my left eyebrow is GONE (!) and so I looked a little closer and noticed a lot of eyelashes have also given it up.  That was not fun!  I was hoping they would hang in there!

Today at my appointment with my team I learned that the biopsy taken during my endoscopy is mild Graft Verses Host Disease (GVHD).  The symptoms are nausea and vomiting, which I’ve had a lot of lately.  So I am now on the standard therapeutic steroid treatment since I also have the rejection disease on my skin.  They are also doubling up my anti-rejection drug dosage.  And I will start going to physical therapy at MDA to prevent muscle loss during the steroid treatment.  Before I can get started with that, I have to exercise with the rubber band things at home to build my strength up a little bit.  Other than that the steroids are making me feel good and my appetite is so much better.  Yay!  Tomorrow I will have a pulmonary function test to check my lungs.  The chemo I was on for the transplant sometimes causes damage to lung tissue.  This test is standard for everyone about 2 months out from the transplant.  I’m not expecting there to be a problem.  They will compare the results with the baseline test I had a week before my hospital admission.

Have a great evening!

Tuesday 07-26-11 Day +63

Hi People!  Yesterday I went for my regular appointment and got my magnesium IV and then saw my team.  My skin biopsy came back as Graft VS Host Disease -(GVHD).  My team decided to go ahead and start me on steroid treatment for GVHD, and told me it was important to have my endoscopy with biopsy today.  The Doctors want transplant patients to experience a little bit of GVHD because it means my donor is fighting my remaining diseased cells.  But since I’ve had the rash over 6 weeks, and have lost so much weight due to nausea and loss of appetite I needed the endoscopy.  (GVHD also occurs in the stomach.)  So today we went to that floor at our appointment time and waited, and waited, and waited!  Over 5 hours we were there!  With nothing to eat or drink since midnight, I was about to die!  It didn’t help that a lady came in and sat down next to me with a bag of food and ate for a full 30 minutes!  Potato chips!  The Doctor was very nice as was his team, and the procedure went very well.  Everything in my stomach looked great.  I have pictures.  The biopsy will take 2 days to get results.   The great thing was that when we finally got out of there I wanted a steak.  Haven’t had one in months, in fact very little meat at all.  It went down good and actually tasted good for a well done steak!  (I can’t eat any meat that is not well done, another rule for transplant patients).  I am encouraged that my stomach and appetite are getting better.  The steroids should clear everything up.  Here was a huge surprise…my cholesterol was 297.  Given my starvation diet I’ve been on I couldn’t believe it!  But it turns out that the anti-rejection drug I am on, sirilimus, causes high cholesterol.  So now I’m on medicine for that!  Needless to say I keep a pill diary!

I think I’m getting over some of my issues and  getting  rid of last week’s chemo effects. Life is good!

Saturday July 23 Day +60

THINGS THAT ARE MAKING ME HAPPY THIS MORNING !!!!

Waking up with my husband this morning

Cinnamon toast and cereal for breakfast

Watching John Wayne, Dean Martin, Angie Dickenson, and Ricky Nelson in “Rio Bravo”

Giving myself a much needed pedicure

Listening to Elton John on my iPod

Feeling better about my health…..chemo is over for 3 weeks

 

Thursday July 21 Day +58

Hi Everybody!  This week has been a very busy week at the hospital.  I’ve had a few hiccups so Jan, (my sister who is spending the week with me) and I have spent quite a bit of time at MDA.  It started with Monday’s regular treatment, a dressing change that revealed wounds under my bandage adhesive covering my central line, central line was clotted and had to be worked on, and the new chemo, Vidaza, was started.  Since my lines were clotted, I had to give all the blood for the Vidaza study and my regular bloodwork in both arms.  The chemo injection turns out to be given in 2 injections since it is so thick.  I felt like a pin cushion!  Tuesday my bandage filled up with fluid from my surrounding lymph nodes and we made a visit to the hospital that night.  Wednesday the lab couldn’t access my lines again to get blood drawn so it was another stick, atually 2 sticks, to get it drawn.  This was the third day of chemo and I was really feeling the side effects. Plus, I have some sort of stomach pain and total loss of appetite.  As of today I have lost 28 pounds.  I am scheduled for an endoscopy with biopsy next Tuesday unless it resolves before then.  Graft VS Host Disease happens on the skin, and also in the stomach.  The biopsy will tell us if it is GVHD.  It was back to Infusion Therapy to get declogged again, but amazingly the silly thing worked and gave blood return.  Yay!  Today I had my regular visit with my team and they feel like my rash has hung around long enough to do a punch biopsy on my stomach.  It wasn’t bad at all, a little shot to numb, then a punch removed a perfect piece of tissue, then a suture.  Two more Vidaza shots today.  The Vidaza shots make the injection site very sore and red, so the backs of both arms and 4 spots on my belly are very sore.  Plus the biopsy sight!  I’m a mess!  Everything is good though, today I felt better, not as much nausea (I’m on nausea medicine 24/7), or tiredness, and lack of energy.  Jan and I managed to do some fun things, and it has been great spending time with her!

Before Jan got here, Kelli spent one night with me on Thursday.  I’m posting a picture of us at Escalante’s eating dinner.  It was a fun evening.  The next day we did a little shopping and hung out.  Fun times!

On Friday night Hayes and Harley got here from a vacation in San Antonio!  They stayed until Sunday morning.  It was a special treat!  Harley and I played paper dolls and we all three just hung out together and did a little bit of shopping.  It was wonderful!  I was so sad to see them go (lots of tears!)  Oh how homesick I am! I miss my grandkids so very much!  Can’t wait to go home.

Jan will leave in the morning, and Wade will get here right after lunch.  Tomorrow is our 7th anniversary!  Patti and Richard, my nurse and our good friends, invited us out for dinner because it is also their anniversary tomorrow.  My appetite and nausea are so bad we decided to postpone until it improves.  Disappointing!   I’m ready to see my honey tomorrow!

Hope you all have a great weekend!

                                                                                                                                                                                                                                Kelli and me at Escalante’s

                                                                                                                                                                                                             Harley with my wig on!

                                                                                                                                                                                                       Harley, Mimi, and Hayes.   Already miss them!

                                                                                                                                                                                                                Me and my sister, Jan

Friday July 15 Day +52

Lots of news this week.  Everything is going very well!  MDA is weaning me from my visits, now I only go in two times a week!  They have discontinued the home IV magnesium treatments, I only get magnesium now during my twice weekly visits.  Progress!  My team, Dr. Hosing, and any other professional I asked suggested I enter a research study for stem cell transplant patients.  At first I was sceptical, but the more I learned about it, I knew I had to do it.  It is a study where I would receive the chemo drug, Vidaza, 5 days a week every 30 days for one year.  First of all, without Vidaza I have a 50% chance of relapse.  With the drug, it increases my chances of not relapsing to 70 – 80%.  That’s pretty substantial I think.  The chemo is mild, most people have very few side effects, and I can withdraw from the study anytime if I want.  The reason they are doing the study is because they are diligently working to make the Vidaza for transplant patients a “standard of care”.  Which means that in a year or so, every transplant patient will do this.  It’s difficult to get something new to become a standard of care, it must be proven first. This study is randomized by the computer, meaning that the computer only selects half of the patients that consent for the study.  Yay!  I was selected, and will start next Monday with the first 5 shots.  I also agreed to donate extra blood for the research of this study.  When I found out Dr. Garcia-Manero, my Doctor before my transplant, was doing the blood research, I knew it was all good!  He is at the top of his field, considered to be the number 1 authority in Myelodysplastic Syndromes.

When I was leaving R10 after my treatments yesterday I saw Dr. Jones.  I wanted to hug his neck but restrained myself!  I told him how good I was doing, and that I felt like he saved my life during those dark times in the hospital.  He said “no, you did all the work…I remember!”  Love that man!

Kelli came over yesterday afternoon and spent the night (Wade went home yesterday morning).  We had a great pizza at Dolce Vita, and just hung out at the apartment.  Really enjoyed it!  We had some catching up to do.   Hayes and Harley get here sometime today!  So excited!  I’ll post pictures on the next blog.  It’s going to be a great weekend…hope yours is too!

Sunday July 10 Day +47

Wow!  I can’t believe I am 47 days out from my transplant!  Every day is another day closer to going home….in fact I may be halfway there!  Health wise I am doing good!  I still have small fires to put out every week, the rash being the hardest to get rid of.  The team thinks it is a touch of Graft Verses Host Disease (rejection).  They say that a little bit of this is a good thing because it means my donor is fighting my remaining diseased cells which we want to be rid of.  My counts have been hanging in there, still getting neupogen shots occasionally, but the last one was half a dose because I responded so much to the previous shot that my white count was phenomenally high.  This means my donor’s stem cells are coming along nicely.  It’s all good!!!!!  My appetite seems to be improving although I still have my moments!  I actually ate dinner 2 or 3 times this week instead of my usual bowl of oatmeal, which is a first!  My appetite is best in the morning and usually gets worse as the day goes on.

This week I had Glo, my mother-in-law with me as my caretaker.  We had a great week!  Did some shopping, ate out several times, and relaxed, read, played a lot of Yahtzee and had a wonderful time!  One evening we met her friends ,who have a summer home in Montana, for dinner.  Sandy was here for her annual appointment at MD Anderson and got a good report.  Yay!  Wade flies in tonight and will be here until Thursday.  I am ready to see that man!  Then my sister, Jan, will be here for a week.  I’m looking forward to spending time with her!  Things are going very well, and I am so grateful.

One different thing that happened last week is that I had to get on Home Health because my insurance has a contract with them and therefore they are cheaper on my home IV magnesium and supplies and they won’t cover it from MDA anymore.  Lots of paperwork, but it is going to be ok.  They deliver to my apartment once a week everything I will need for the week.  There is no pump involved, just a strange looking double walled bag with tubing attached, already primed.  Very easy.  Somehow there is pressure in the bag that makes it drip the appropriate amount per hour.  It’s only taking about an hour and a half instead of the usual two hours which is fine with me!

Hope everyone has a great Monday!

  Mama Glo and me