Pay Attention

I've been just hanging out in Houston waiting for movement toward starting treatment for a while now. The first couple of days were not too bad. I saw some former students, watched a lot of basketball (March Madness should actually be called Christmas in March- just my opinion). When I realized how bored I was, I started searching for alumni groups to watch the games with and that's been fun. I never did catch up with the UK group but  I've watched the last three Tech games with alumni. I can't wait to see our Red Raiders in their Finals NCAA championship game. If they win this, the bar we go to is going to be CRAY Z!

Not that I couldn't do an entire post about basketball, but let's get right into the heart of the matter. Speaking of hearts, last week I had an EKG and an echocardiogram as a preliminary test for the treatment. My heart is fine, but sometimes chemo can affect organs and require a baseline reading before starting a new treatment. They will likely be routinely checking blood and urine for kidney and liver function before and throughout the time I'm getting the treatment. And, as always, the obligatory pregnancy test. A long time ago when I was going on a trial where they feared lung issues, I went for a lung test, for example, so this is all very routine. Anyway, the results on the heart tests were: 1) I have a heart 2) the results of the tests showed no issues. Although I wasn't worried about it, but because both of my parents have different heart issues, I wasn't sure how that might go. However, since my heart is made of pure gold, it appears to be hardy (or, more appropriately, "hearty").

Since then, there's been some inching forward on the treatment front. I've learned that, contrary to what I initially thought, insurance denied both chemo drugs. Not to be deterred (or perhaps because they knew I wouldn't be deterred), MDAnderson requested that the pharmaceutical company provide the drugs for us and they agreed. I guess it's one of those programs like you see on TV when, at the end of a drug commercial, they say, "If you can't afford your medication, Company X can help." Who knew I qualified for welfare? Since chemo can range from $600-$1000+ per pill and I'm going to need a lot of it, I can see how I (or just about anyone) would qualify for this type of welfare.

The day before my EKG and echo, I was asked to come by there to talk with the clinic pharmacist about how these drugs should be taken once we get them. I walked, of course, which is over 5 1/2 miles round trip. I walked over for the heart appointments the following day too, so I was feeling pretty robust.

As I then sat here day after day, awaiting more information on when we would get the pills, when we would start, etc., I began exercising like crazy so that my body can stay strong. Don't worry, I don't overdo it. I know how much my body needs to keep my glucose and stress low while getting strong. Then, on Friday, there was word that things were moving, both drugs were being given for free, and that they would be sent to Lubbock. We had thought I'd be getting one here, but that was incorrect. Yesterday I needed to go over there anyway to order some scans, pick up a refill on another drug, and so I stopped by the clinic to verify things. I got a copy of the letter from the company outlining the agreement so now I have it all in writing. Full proof in court (I hope)!

Next we spent a few days watching for the pills to arrive in Lubbock (ok, that was Jason's job. All I did was ask him about it constantly.) and me wondering how or when I should go home, so I booked a Southwest flight. Turns out Kimmie is coming to Houston Thursday to see her dad, then driving to Austin to see all of our girlies on Friday. I had planned to fly out on Friday, but Southwest is so easy on rebooking flights, I just decided to go with her to see what Jason refers to as, "The Insane Clown Posse" made up of Kim, Jane, Katy, and I guess (now) Poppy and Greta. I have rebooked on Southwest to fly to Lubbock from Austin because, again, Southwest!

I was told that once I'm in the same city with the pills, I should notify my MDA team to discuss a start date. I will take this at home in Lubbock, can take it with me when I travel, and the company will ship it to me wherever I am if I need for them to. I'm sure it's because they know what a big deal I am. The only other related topic is that at some point I will have a preliminary MRI to be the baseline at the start of treatment so that they can monitor whether the treatment appears to be working. Now you know where we are medically.

My adventures in Houston and associated lessons are a journey all their own. It's kind of nuts to think about. On the one hand, I have this awful situation and yet it has opened so many opportunities to learn and grow and appreciate all that the universe and life has to offer. Yesterday, when I walked to MDA, I was very mindful of everything I encountered, as I always am. Being mindful is essential for so many reasons: physical, mental, and emotional. In my case, it's more important now than ever because of my left visual field cut. I have the walk down to exact science. I always go to crosswalks, if possible I will go to cross signals (this is possible in most locations). I have to use specific landmarks because the area for spatial mapping has been permanently removed and if I walk too far and lose my sense of where I am, Google maps is my only savior.

When I left the house and walked out of the front gate, I noticed a vagrant walking down the street. No big thing around here. On my route, I walk past the Mexican Consulate, where people are always lined up to get their papers in order. Entire families with grandparents, parents, children, and babies just trying to keep their families together. As I walked down the street toward the park, I thought one of the construction workers at the Holocaust museum whistled at me. This used to bother me when I was a younger woman but now? Whatever. Moments later, when I heard it a second time, I realized it was just a bird with excellent taste. About a mile into the walk, I come to the park. I walked across the park and saw several obviously frazzled moms who clearly just wanted to get the kids out of the house and it was helping- I could tell because I've been there. I saw people running in the heat and humidity, sweating from head to toe, and I could tell it wasn't easy.

Once at MDA I climbed the 10 floors to the pharmacy only to find out that I didn't actually know what I needed and had to go to the clinic to investigate. No problem. But first, I needed to go to medical records to order some scans. After that, I took the nearest stairwell to the 10th floor, only to find that I was in the patient tower. Hint: you cannot get to the pharmacy in the patient tower. A housekeeper who barely spoke English was able to understand "pharmacy" because it's closely related to the same word in Spanish. She was able to communicate in decent broken English that I needed to take the elevator to seven, walk around the building, and then go to the 10th floor. Saved! Did I mention that I am missing my mapping/spatial areas and get lost without landmarks? Well, that was a close one because Google maps doesn't work that well inside of buildings. After my second trip to the pharmacy, I stopped by the Brain and Spine Clinic, where I was given the new information about when and where to expect the chemo. 

If you've never spent time at MD Anderson or a place like it, there's a lot going on. The people who work there are typically very happy and supportive. They genuinely want to be helpful because they know that the people they serve are dealing with some heavy burdens. When I'm in the waiting area, I typically observe what is happening around me because this is life. I mean, these are the situations where life is happening right here. The good, the bad, the scary, the grace, the reality. It's all there to be observed. Once finished there, it was time to follow my regular path in reverse, again by following landmarks. Across the MDAnderson property, between the Texas Medical Center buildings, past the county hospital and trauma center, turn at the crosswalk with the Homer Simpson sticker, toward the zoo. I saw more sweaty runners. As I walked past the zoo entrance, there were families leaving, done for the day, looking exhausted. I witnessed a little girl try to jump onto the curb, miss, and fall. When I got to the Mexican Consulate, I saw only a woman and her teenage daughter sitting on the sidewalk waiting and hoping to be let in. A couple of blocks further and I see some vagrants down a side street lined up and being loaded into police vans with lights blazing. I stopped at Fiesta (a Mexican grocery) just a block shy of the house.

While in line at Fiesta, a man to my left said something to me about using my basket that I'd just emptied. I said, "Thank you for saying something because I'm blind on the left and I never would have seen you there." That's when I turned to look at him. He seemed like a nice guy and he certainly wasn't homeless, but he wasn't exactly well polished, sophisticated, or professional. But he said the most interesting thing to me. He said, "Oh, I'm so sorry. That must be terrible!" My response was something like, "Well, it's hard but I'm getting used to it. I'm learning how to deal with it." He repeated his earlier statement about how sorry he was that I am having this issue. So then it all dawned on me and I heard myself say, " You know, we've all got something that we are dealing with. This is just mine. I appreciate your compassion." So here is this man, who I've never met, in the grocery store, very generously showing me compassion. I wished him well and continued on my last block carrying my avocados, Mexican cream, and eggs. As I approached the house it all came together for me. Desperation. Compassion. That's what life is and one way that we are all connected. The most consistent thing I witnessed on that journey to and from MD Anderson was desperation. In everything I did and in every person's eyes there was desperation. The people desperately trying to keep their families together and avoid deportation, the vagrants with mental illness or drug problems on their way to jail or worse, the runners trying to get healthy without having a heat stroke, the parents trying to keep their kids occupied so that they themselves can cope, the patients at MD Anderson Cancer Center, some of which may not even be able to pay their co-pays. As I found myself saying to the nice man at the store, we all have something that we suffer. We are all desperate about something on some level. What he taught me was that no matter who you are, how different we are, what we are desperately dealing with, we first must have compassion for one another. It's the only way for us to deal with the human condition. This very important and profound lesson reminded me of something I heard Aimee Mann (singer/songwriter) say in an interview in April, 2017 (I had to look up the exact wording but I remembered the message was related to my experience): "I think it's hard to be a person. It is really hard to negotiate relationships. It's hard to negotiate loss, it's hard to have perspective on your own problems, it's hard to break out of the habits and dynamics of your childhood...and people aren't really naturally born with the skills to negotiate it. So I have a lot of compassion for people. Everybody's struggling in some way."

I'm dumbfounded that the essence of a quote that I was so struck by two years ago came back into my head as I was confronted with the realization of its truth in my own life, or more pointedly, life in general. There are lessons in everything we do if we are paying attention. This was my lesson yesterday. I'm glad I was paying attention.

Now I look forward to receiving the chemo pills, starting the treatment, and seeing what's next on this wild ride!