January 8, 2005

On Tuesday January 4, 2005, Diana and I departed from our Frisco home via our car on our first trip to MD Anderson in Houston TX. It is a 5 hour trip via auto – about 275 miles each way. We made reservations at a Marriott Hotel – which we did not know at the time – that was located in the Medical Center area of Houston and across the street within walking distance of of the MD Anderson Clinic. Our appointment was for Wednesday morning at 9:30 AM. Armed with all of our records, we found our way to a huge waiting room on the ninth floor of the clinic. Both of us were quite nervous as we sat in the waiting room. We obviously were the only newbies – no body else had their x-rays, etc.

Finally, Diana was called. A nurse took Diana’s vital signs like weight, blood pressure, temperature, and put us in an examination room. After a long wait, we met Dr. Blumenschein. He was a young doctor in his mid to late 30’s, tall and well mannered. His first question was – “Had we been given a prognosis?” Diana told him of the Frisco oncologist’s prognosis. Dr. Blumenschein was quick to inform us that the oncologists quote averages and that everyone is different. He told us he would be open and honest with us – there was not a cure for Stage IV lung cancer, but many of his patients were enjoying many years of the disease being in control and that was what he would try to do for Diana.

First, as he explained, he had to know exactly what he was trying to control. Even though we had brought all of our test results, he wanted new tests completed before he would recommend any course of action. So for the rest of Wednesday, Thursday and Friday, he had the following tests scheduled: blood test, chest x-ray, pelvis x-ray, femur x-ray, CAT Scan, bone scan, MRI L-spine, MRI T-spine and brain MRI. Neither Diana nor I combined had had that many tests in our life let alone a few days. Wow. But it was sure encouraging to hear his attitude rather than the prognosis we had been given previously.

On Thursday, it was test after test. We finished Diana’s last test at 11 PM after arriving at the clinic at 10 AM that morning. We got back to the Marriott around 11:30 PM. Both of us were exhausted.

While Diana was taking tests on Thursday, I was meeting with the financial people at MD Anderson. They did not like the health insurance provider that Diana had. Rather than have a delay while they were getting approval – I gave them a cash deposit on account so we could proceed with her tests before getting insurance approval. After a second meeting with the supervisor, MD Anderson agreed to invoice Diana’s insurance company directly. They originally wanted me to pay all the bills and for me to submit them to the insurance company. Whew! What a job that would’ve been. I am not a trained salesman: however, I used all of my high tech selling experience in getting MD Anderson to agree to invoice Diana’s insurance provider directly.

After 3 full days of tests we drove home on late Friday afternoon. It was a long drive, but both of us were encouraged by what we had seen heard and been through in our first visit to MD anderson. Their attitude was different and although both of us were tired, we felt as if we were making progress and doing the right thing. Our next appointment would be January 12 with Dr. Blumenschein to discuss the results of the tests.

To continue with the Diary Of A Cancer Caregiver journey, click on the link below

 

January 15, 2005

After a couple of days rest at home, we were back on the road to MD Anderson on Monday afternoon. A new test, an echocardiogram had been scheduled for Tuesday and our appointment with Dr. Blumenschein was on Wednesday. Once again we stayed at the Marriott.

 

On Wednesday, Dr. Blumenschein provided the results of Diana’s tests. Besides everything we already knew, they had found a small amount of cancer in her skull – however, Dr. Blumenschein said that it did not change any treatment plans because the skull is considered bone. Therefore, it was the same as the cancer in her other bones. Fluid had also been detected near her heart and pleural cavity. There was nothing he would do immediately because of the fluid but would continue to monitor those areas. However, he was going to schedule an EKG as a follow up to see if the fluid was impacting her heart functioning.Dr. Blumenschein then discussed chemotherapy treatment options. With the cancer cells all over Diana’s body, radiation was not an option at this time. Since we brought up the subject of Clinical Trials previously – he mentioned one that he thought would be good for Diana. It was a combination of Cisplatin (an approved FDA chemotherapy drug) and TLK298.

We set a meeting for us with the research nurse assigned to that clinical trial. The research nurse explained the treatment process to us for the clinical trial. He also gave us some forms which needed to be signed if we decided to proceed with the clinical trial. Dr. Blumenschein wanted Diana to have time to think about which treatment she wanted to pursue – so he suggested we go home, think about it and make a decision next week.

We drove back to Frisco on Thursday morning. We left the clinic convinced that Diana would pursue the clinical trial treatment. We had a couple of days at home before we would have to depart back to MD Anderson on the following Monday. The EKG was scheduled for Tuesday and our treatment decision appointment with Dr. Blumenschein was on Wednesday after which Diana would get her first treatment.

I spent Friday in Diana’s office inundated with things to do. Diana stayed at home to rest. I went home for lunch with Diana. We spent the weekend at home. Only discussed her treatment options for a couple of minutes since we were in agreement that we would proceed with the clinical trial.

 

January 22, 2005

On Monday afternoon, January 17, we departed for Houston and the Marriott. It was the third week in a row that we would travel to MD Anderson in Houston. The staff at the Marriott was beginning to recognize us. Fortunately, during my work and travel years, I had spent many a night at a Marriott so I was classified as one of their Platinum guests. Platinum guests get upgrades at no cost when one is available. So we got to stay on the concierge floor of the hotel which gave us access to the concierge lounge. Snacks, food and drink all day. Just like going to the kitchen at home. Usually, there is a very elaborate breakfast buffet and a lighter dinner snack available. It is very convenient to go get something to drink or eat without having to leave the hotel. On Tuesday Diana had her EKG test. Else it was a quiet day spent at the hotel. I went out and brought in Chinese food for dinner. Neither of us were in a mood to go out. Diana is very nervous but trying not to show it. I am doing all I can to make her as comfortable as possible.

 

Wednesday, we went to the clinic to meet with Dr. Blumenschein. Diana and I had discussed and had agreed that Diana would do the clinical trial as her treatment. Diana and I had signed all of the required forms authorizing the clinical trial.We met with Dr. Blumenschein who knew that Diana had already signed all of the papers for the clinical trial. He spoke to Diana for 30 – 45 minutes. At that point he was convinced Diana wanted to proceed with the clinical trial and said he would now sign the orders to proceed. He was just making sure that Diana wanted to proceed. Signing of the documents was not enough for him.

Diana took her chemo treatment Wednesday night and finished about 7 PM. We went back to our hotel and departed for Frisco Thursday morning. About 3 hours into our trip home, Diana did not feel well. We pulled off the freeway and into a huge parking lot of a sporting goods retailer. Diana had her first case of nausea from chemo. I felt helpless. We were not prepared for this event. I went scrambling for paper towels, water, etc to clean up. I had not expected nor planned for such an event. I would in the future however. We finally got Diana cleaned up and continued home. Once we got home, Diana went straight to bed.

Diana was sick several times on Thursday afternoon/evening and Friday morning. On Friday morning around 11 AM I sent an email to the research nurse about Diana’s nausea. Within five minutes I received a phone call on my cell phone. It was our research nurse at MD Anderson. He had received my email. He told me that Dr. Blumenschein was out of town, but he would speak with him soon. He told me to get the telephone number of our pharmacy and email it to him. Once he spoke with Dr. Blumenschein, he would call in a new prescription for Diana’s nausea and inform me.

Around 1 PM I received a call from MD Anderson that a new prescription had been called into our pharmacy for Diana. I immediately went and picked it up. The new prescription was suppositories – but they worked. Diana has been resting all weekend. She has been very fatigued. Emotionally, it has been a tough week for both of us.

I spent Friday and Saturday at her office, but my mind was not there. I hate to see Diana sick, especially when there is nothing I can do to help. However, we need to learn to suffer through these sick days as they are very normal when you take a chemotherapy drug. I cannot believe what Diana is going through and there is nothing I can do to improve the situation. Every time she gets sick, I get mentally sick and just walk around in a daze until I can help her back to bed.