Wednesday, May 9, 2012

Another long day....

I was finally able to take a moment and go see a dermatologist for myself.  I had a complete exam.  I went to UTMB Dermatology in Bay Colony and saw Dr. Erica Kelly.  She was GREAT!  I would highly recommend her!  She looked me over and said all of my spots/freckles/moles looked fine.  I have 2 darker spots on either side of my back that she wants to keep an eye on for any changes, only because they are darker than my other spots/freckles/moles.  But she was not too concerned about them.  I don't have to go back for 12 months.  I was in and out in less than an hour.  You know, I would have never even thought about skin cancer screening before Steve's diagnosis.  Now, I think why would I not get checked every year?  I get a mammogram every year!! TRUST me that is far more invasive, painful, and takes much longer.      If you are reading this, please schedule a dermatology appointment and please go once a year.  It is inexpensive (you can also find many free screenings) and takes less than an hour.  This could save your life!!

Steve had to go again this morning to have his blood drawn for labs.  The results were about as we had expected.  His platelet count was 9 (was 4 on Monday, but this is still extremely low, especially considering he had the platelet transfusion on Monday), hemoglobin 8.3 (up from 8.2 on Monday and they only transfuse blood when you are below 8), and white blood cell count 1.7 (down from 2. something on Monday).  Our regular nurse, Delores was out of the office again today.  I really hate when she is out, because we have to deal with other nurses who are swamped with their own patients and don't personally really know what's going on with Steve.  When the "fill in" nurse called me back to give me the numbers, she said that Steve needed to have a platelet transfusion again today.  Since she called me around 11:30 she had plenty of time to get it requested at the Bay Area location which makes it so much easier on us.  I had not heard back from anyone by 1:30, so I called back.  This time the "fill in" nurse told me that the Bay Area location does not do same day transfusions and they would schedule it for tomorrow.  I got a little upset and asked to speak with the head nurse.  With Steve's platelet count at a 9, we really can't gamble with waiting until tomorrow.  So, the head nurse got on the phone, agreed with me and got us set up at the Main Campus for 3:30.  I called the school and had them send Sadie a note to ride the daycare bus, called the daycare and asked them to add Sadie to the pick up list, and called mom (our continuous life saver) and asked her to pick up the kids from daycare.  We left about 2:15 and we got to MD Anderson at 3:15.  At around 3:45 I asked the check in person how far behind they were running.  She let me know they were running about an hour behind.  We finally got called back at about 5:00.  When we got to the infusion room, the nurse asked if we knew why the doctor did not order pre meds.  When you get platelets you are usually given Tylenol and Benadryl before getting the platelets.  There is a high risk for some sort of reaction and/or fever with platelets, that is why these are given.....but these have to be ON the orders.  So, then the transfusion nurse had to page the doctor and wait for orders for Benadryl and Tylenol to get added.  They finally got the orders, got the pre meds in and Steve was started on the platelets around 6:00.  The platelets take anywhere from 30-60 minutes depending on how many units he gets.  He did get a full 6 units today, so it took about an hour.  After sitting there for over 20 minutes after his drip was complete, I went to search for someone to come unhook him.  We did not end up leaving the hospital until 7:30ish.  By the time we got the kids and got home it was about 8:45.  Considering we left the house @ 2:15 and got home @ 8:45, the whole platelet process ended up turning into a 6 1/2 hour ordeal.....sigh.  But whatever, Steve has platelets and is good for another couple of days.  He will get blood work again on Friday.  I pretty much confirmed that Steve will NOT be starting his next round on Monday like he should have.  He will still however have his scans on Sunday and we will get the results and see the doctor the following day.

Waiting on the 8th floor outdoor deck/garden to be called for the platelet transfusion.

More of the gardens. 

Nice view from the 8th floor deck.  It was a beautiful day with nice breezes. 

Steve, not too happy today :(

Not sure if you will be able to read this, but it was kind of interesting.  Apparently they have "quality control" for the blood products.  Steve's bag of platelets was randomly drawn for quality control.  The letter basically explains to the nurse to keep the bag when it is unhooked, put in a biohazard bag and call quality control to come pick it up.  I just thought this was interesting. 

Steve is starting to get a little more depressed every day.  The toll the medicines are taking on his body are making him miserable.  We will discuss all of this with the doctor on Monday.  Maybe the treatment has worked well enough after 4 treatments to go ahead and stop treatments for a while and do surgery to remove the adrenal tumor?  We will see.  We will get all of our options and go from there.

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