Week #2 Good Results

Monday was day 15 of my 1^st cycle of the experimental drug known by us as “AG-221”.  This was another long day of testing with 9 blood draws, an EKG, chest x-ray and a bone marrow aspiration.  The first blood test review that morning was very good. This was the first time since my initial diagnosis in February 2014 that my White Blood Cell count was up to a “normal” range. (This count more than doubled from a week ago).  Also, my Red Blood Cell and Platelet counts, while still lower than normal, were significantly improved.  We were thrilled at such a good report!  This seems to indicate the experimental treatment is working for me.

It was ironic since I had felt very poor on Saturday and Sunday with nausea, diarrhea and extreme fatigue. Early Monday morning prior to my first appointments, I was feeling so ill that I almost cancelled my day of testing knowing how difficult over 12 hours of this is on me when I feel healthy not to mention the toll it would have with me feeling sick. However, we toughed it out and went on for as long as I could.  As the day went on I felt strong enough to continue and finished on such a positive note of encouragement. Hopefully, they can get this nausea, diarrhea and fatigue under control and it is not a long-term side affect of my treatment.

Mentally and emotionally, I'm very encouraged. We still have a long way to go with my treatment and understand setbacks can happen. For now, we just have to believe in the healing power of good science and our faith in God who makes all things possible.

Successful First Week

Another one of the marvels of this cancer journey is the actual travels we take.  As often as we can, we prefer to ride the shuttle bus that is offered as a “free service” by our apartment complex for residences.  Since we are less than 2 miles from the Texas Medical Center District, most, if not all of the riders of our shuttle bus have some connection to one of the hospitals or medical clinics. Patients like us as well as a variety of health care professionals and students can be found riding the shuttles everyday.

This is a somewhat unique experience for us.  The last time we rode buses for any period of time was when we were in junior high school riding the bus everyday to and from school.  Now living in a large city is the real difference maker. Mass transit was always been a term associated with strange places like New York City or Chicago.  So for us, riding the shuttle back and forth to MD Anderson has been an interesting experience. First of all it beats driving our own car and then having to park. Parking is only available in the medical district in large, pay lots and garages.  The garages near or attached to MD Anderson cost $12 per day with a $5 minimum.  So if you will be there any significant length of time, $12 per day gets expensive.  So it just makes more sense to ride the free shuttle.

Secondly, the wear and tear on your vehicle, not to mention on your mental state, can get to be difficult when you have to fight the local Houston traffic. The shuttle drivers handle this task so easily. Finally, the most interesting part of riding the shuttle is the people we encounter.  This journey is not just a brief hop to and from treatment.  It is a trip of shared experiences, new mutual friendships and complete strangers placed into brief encounters with each other. 

Yesterday, we witnessed such a moment of kindness by our driver.  One of the passengers was a young woman, medical student who apparently rides the shuttle daily.  The driver knew her name and even knew some personal things about her. On this day the student needed to stop at a different building in the middle of a busy block to meet one of her advisors. She told the driver she would get off at a nearby stop and walk across the street to her destination.  The driver insisted she not try to cross the street in the middle of a block so she took her to the nearest intersection of the building’s location not even on our bus route.  She told the student “I don’t want your momma calling me from Chicago about you getting hurt on my bus route”.  This was such a sweet thing to hear and see.  Two people from completely different worlds being so nicely connected, if ever so briefly.

Maybe this is what my cancer journey is really all about.  I travel to get treatment for an incurable disease hoping to live longer and find even greater cures along the way.  Healing is more than what meets the eye.  It is the precious moments of life’s journey that gives us cause to pause and reflect on what life is all about, in the first place.

So far my new medication is helping.  I have not experienced any significant poor side affects. My lab tests are improving sooner than we had expected.  If things continue like this we may be able to go back home to Mississippi in a few weeks.  We will continue on this course of medication and close testing until November 10^th.  Then we hope the medical team will allow me to continue taking the trial medication from home.

A Long Friday

Day -3, -2, -1. That's not so much a count down as it is the way my study kicks off. The official start of my 28 day cycle begins tomorrow, Monday, October 13th. However, yesterday was Day-3. On that day I took my first dosage of the drug at 10:30 am after 8:00 am lab tests. Then I was monitored very closely for the next 10 hours until 8:30 pm. So we were at MDA for over 12 hours, yesterday. It was a long, tiring day with hourly lab tests. I was given one dose of the drug, 10 blood draws, 5 EKG's and 3 urinalysis tests.

Yesterday was Day -2. It was a much shorter day with a single blood and urinalysis test at 10:30 am. Likewise, today, Day -1 will be a single testing day at 10:30 am. Then we begin the 1st study day tomorrow morning early at 7:15 am.

Those of us at MDA who were recently added to the study were required to do these days -3, -2, & -1 in order to see how we would react to the drug's toxicity. They also wanted to give us higher doses of the drug to put us at the same dose level as participants who have been in the study, previously. They would have gone through a 28 day cycle at lower levels then moved up to the higher doses like I will be taking. Since we are the first humans to receive this drug, the protocol is very tightly controlled and regulated. Other than for the inconvenience of having to spend so much time at MDA, it was uneventful for me with no side effects. 

Over the next 28 days I will take the medicine once a day, mostly from our apartment. Monitoring will be done in the clinic, but on an easier schedule of about  once to twice a week. As with my pre-study testing, post study testing will be done with another bone marrow aspiration/biopsy among others. The goal is to see better bone marrow resulting in improved blood counts. Then we see where to go from there.

God's Sense of Humor

Having to pee in a cup has always been a challenge for me. Men just don't pee on demand like women can. We also don't hold it on demand either. So there is a very short window of opportunity for me and a urine analysis. I'm reminded of the time in 1971 while going through out processing trying to leave Vietnam. The US Military had instituted a policy that required all returning service personnel to have a drug urine test prior to going home. In my case, we first traveled to one of three out processing centers know as transit centers. Typically you stayed there anywhere from one day to one week, depending on how many solders were being processed in or out. I left RVN in September 1971 when a large withdrawal of troops was beginning so it took me about 3 days in the transit area before my flight manifest was assigned.

So the very first thing you do upon arrival at the transit center is go into a large latrine area for the urine sample to be collected. Mind you, this is no simple urine analysis procedure. Far from it! Peeing on demand while standing at a large urinal that resembles a horse feeding trough with guys on either side of you doing the same thing and with MP's standing above you on guard platforms holding M-16 rifles while watching you carefully is not the best way for me to pee in the cup. The pressure of knowing that if you can't pee, you can't leave Vietnam is unbelievable. And so it was as I stood there for what seemed like an hour doing everything possible trying to make it happen and I'm dry as a bone. Mentally I'm writing the letter to my parents and Janine telling them I may be delayed a day or two longer because I can't pee in the cup. 

The whole reason you are watched so carefully while doing this nasty task is so that you can't swap your "sample" with someone else's, thus avoiding drug detection in your system. I didn't do drugs, I just couldn't pee on demand. Still can't!

So it is with God's great sense of humor that I offer this story. Throughout my entire ordeal since January 2014, I have never been required to give a "sample" for urine analysis. That changed last Friday and yesterday. One of his angels in medical scrubs hands me the bio-hazardous baggy with the infamous little cup inside and instructed me where the bathroom was located. I told her I do not like surprises especially when it comes to my being required to pee on demand. You see this is not easy for me. So I tell her about the Vietnam thing and figure she will have sympathy on an old sick veteran. She didn't even know where Vietnam was nor that we ever fought a war there.

Luckily, I had forgone my urge to go about 30 minutes prior to getting to her area of the clinic. Equally as fortunate for me was that I had consumed some Gatorade earlier as well. So this time I made it without too much trouble. I was however a bit concerned that my output was not enough for their lab to use, but I gave it my all. I wonder if that is why they made me do it all over again the following day (yesterday). 

God smiles in mysterious ways!

We Made It In The IDH2 Study

Just a quick update to say that I was accepted into the IDH2 Study. I started with preliminary testing today and will continue more test for several days next week. We are scheduled for my first treatment (pill) on next Friday or Monday October 13th.

The protocol is pretty intense with numerous tests along the way, in addition to the actual treatments. So we will be in Houston at least 6 more weeks, if not longer. I hope to post much more as the days go by.

Apartment Search

We haven't lived in an apartment since 1975, the year we moved to Jackson. (Except for a temporary apt. stay after the '81 flood.)  Prior to that, apartment living and the search process was a common task during our first four years of married life. Now nearly 40 years later securing an apartment has been challenging, if not interesting, to say the least. For the most part we have been "looking" sight unseen from our home in Jackson for temporary, furnished places in the medical center area in Houston. Phone calls, internet searches wth photo/video views, friends and family referrals and listings from our MDA social workers have been our main tools. For the most part we concentrated our search on the places that offer subsidies to Cancer patients. So we got on several wait lists but could never get anything confirmed. 

The biggest deterant to the process has been not knowing exactly when we would need to move in. My condition just does not lend itself to proper planning. So having grown weary of this process and the emotional stress that goes with it, we decided to be more proactive and look in the temporary, non subsidized market. We set Friday, October 3rd as our move in date regardless of the uncertainty. This resulted in several strong choices in more desirable locations with better amenities. The furnished places that allow short term leases are expensive but very nice. So we secured a place in the Medical/University (Rice) area and have signed a month to month contract. We travel today back to Houston for appointments at MDA on Friday morning and will move into the apartment Friday afternoon, barring any changes in my schedule.

So it's "On The Road Again" for another day of enjoying the highways and byways of Mississippi, Louisiana and Texas. We will miss our MS home and friends for now but want miss all the travel back and forth to Houston. I'm going to get me some cowboy boots, a 10 gallon hat and a book that teaches how to say words like riiiiiiiight and tiiiiight correctly. "Go Texans" but not "Aggies" this week-end!