Saturday, January 10, 2015

Another Good Long Day

Yesterday was a long day of blood tests, doctor and research nurse visits and other testing. Most went well with very good blood test results. My White cell counts were up again this time within the "normal" range, a blessing. All but one blood test indicator was good. The only real concern was the count that measures my pancreas. It shot up very high to a point of concern. My doctor ordered an echogram scan of my abdomin, gall bladder and pancreas the results of which showed mild pancreatitis.  He said it was not very bad but to reduce my diet of fatty foods for about a week. This explains why I had a very bad intestinal stomach burning for a few days last week, we suppose.

All in all it was a good day because I continue to respond very well to the research study drug. Also, I was allowed to have my "PICC" line removed which was inserted back in July for all the intravenous chemo, transfusions  and other antibiotics I was getting. It was also being used for the numerous blood tests I was having but hopefully now that I will only be on a once a month schedule of visits to MD Anderson I want need it as much as before. It was a lot of trouble and expense to maintain so we are pleased to have that done.

We are back on the road again heading home. I get very tired from all the travel but rejoice in good visits with a very positive a prognosis.

Friday, January 9, 2015

Another Day, Another Year

We are sitting in the waiting room of the Research Lab at the MDA leukemia center prior to my 7:00am Friday appointment. This is supposed to be my 10 hour day of blood testing and other lab tests. We heard MD Anderson referred to by long time patients as "Most of the Day" Anderson where the M and D stood for your time to spend.  This morning is holding true to form since my scheduled time is for 7 and it is now 7:30 and the receptionist has just arrived.

So in addition to day light savings time (Not now), we enjoy MDA time! That's the change in your clock based on when you see your provider compared to when your appointment time is scheduled. Rarely do these times agree. Not that I am complaining, it's just the way it is here.

Hopefully, today wil be one of good results and that no other treatment will be required. Later this morning we see my doctor again for consultation and test review. Since last month's visit, we have made a list of questions and concerns for him. My biggest question is regarding long term prognosis and if the research drug will continue to be administered as it has been.

As time goes by new issues are discovered with the drug. Part of any study is evaluating these side effects. All of the participants like me get some negative effects that need documentation so we all can be advised. So each cycle we see what has changed and are required to re-sign consent forms, etc. This process is as important as the treatment. We will meet with my Research Nurse soon to do this and also to be given the next month's supply of drugs. At that time we turn in the empty pill bottle from last month and our completed daily diary of dosages taken. I am always required to to take the medication at a specific time each day and within a time frame "window"  
around eating and drinking. This is an unpopular time because for a three hour period I must "fast".

"Another day, another time...."