2004

She recovered pretty quickly and the tests proved that it was malignant. She went back to work full time so as to get health insurance coverage through the hospital where she was a nurse. They gave her a bit of a hard time about having a pre-existing condition, but we were able to fight that, with the help of several other nurses. She worked, and felt fine, for the next 6 months. She wasn’t worried about it at all. She went in for new scans, with her new oncologist and was unconcerned. The night after her scans, she called up one of her nurse friends who was working at the hospital. She hacked into the system to read mom’s results to her over the phone, only stopping midway and bursting in to tears when she realized what she was reading. I still have a hard copy of this report. Basically, five tumors on her liver. She didn’t call any of us until she had been to the doctor and he told her himself what was happening. She didn’t want to say anything to me. I practically had to force it out of her. I think it was at this point that she realized her life was in jeopardy. Her oncologist told her she had less than a year, unless she pursued this hard core. He did the happy dance in his office when he realized she had a daughter living in Houston, relatively close to MD Anderson. He told her that the best course of action for her was a drug called Interleukin and that they only offered it in St. Louis at low dosage. She needed what was called High Dose IL-2. She could have taken another drug, called interferon but it did not have the success rate that she needed. He insisted High Dose IL-2 was necessary. They offered it at MD Anderson. The next few weeks were spent fighting the insurance company to cover her treatments at MDA. They did NOT want to. The nurses arranged to have their time off donated to her account so she could keep her house in St. Louis, while she came down to live with us for a few months and went through her treatments. She had a liver biopsy during this time as well. She was so nervous about this because you have to be awake for it while they stick a giant needle in your stomach, so that you can take breaths to move your lungs out of the way. She prayed and prayed for peace and when she went in to have it done, she said she felt totally calm and once it was all over, she climbed off the table and exclaimed, “That was great!!!” The staff was all totally shocked by her response and her attitude! No one ever says that after a liver biopsy!! She knew her prayer had been answered.

The biopsy showed that the tumors were all malignant and that they were in fact renal cells. Meaning, her cancer was officially stage four.

Within weeks, she was packing and moving down to Houston to live with us. We got her in to see the doctors and they wanted to put her on a clinical trial to begin with. She agreed and for the next 6 weeks, she and I each gave her injections of this drug twice a day. That was not fun. I practiced on oranges.

We went back in when her time was done and she was rescanned. It had grown, if such a thing was possible. One of the tumors had almost doubled in size. Her largest was over 5cm. Her doctor told her her “Life was in jeopardy” and she had to act swiftly. It was September now, and she had some hard decisions to make. We drove up to St. Louis, spent a few days cleaning her house, and got a realtor. Her house sold in one day, for much more than she expected to make on it. But it broke her heart to have to sell it. I wanted to stay and pack up the house, knowing all of her things would have to go into storage, but she was determined that her treatments couldn’t wait. We left and her home ward took care of packing and cleaning the house for her and putting it all into storage for her. It was a true service project, and she was so very grateful.

The GU clinic at MDA sent her over to the Melanoma Clinic for her High Dose IL-2 care, as they are the ones who administered the drug, which had to be given in the ICU. Some patients had died just from taking this drug, hence the need for it to be given in ICU. I remember there was a man who was, months before, coming to MDA and they had asked mom if he could take her place in line for the drug, (this was before she even started the clinical trial), and she said absolutely. We found out at this point, that this man had died in the ICU taking the IL-2. She was very saddened by this, but not discouraged. She never got discouraged.

We met Dr. Patrick Hwu and his amazing team in October and they set up for her to begin High Dose IL-2 the week before Halloween. I don’t remember the specifics of the IL-2 dosing, but it was something like… with High Dose IL-2, you get over 600,000 mg(?) kg(?) every 8 hours for as many doses as you can take, while regular interleukin is significantly lower. It can kill your heart. It is highly toxic. She went into the ICU and received her first dosage with no problems, then her second. I came back to the ICU the next day and she was a different person. She looked as though she had aged years. She was puffy and swollen and was hallucinating. And yet, her heart was strong. It was always strong. She took the High Dose Il-2 for 4 days, I don’t remember how many doses she got in that time, and at the end, she was not herself. They put her on lasix to remove the over 40 pounds of water weight she had gained, and moved her out of the ICU to recover for 3 days. She came home after that to recover for 3 weeks before going back to do it again. Most patients, at that time, made it through about 3 of these weeklong cycles, before quitting, or before their body just can’t take it anymore. Mom took 8 of these week long ICU cycles, each time her body getting more and more weak, more and more hallucinations, weight gain, etc. She had a central line placed, going in to her heart for easy administering of the drug, and I think this was one of the hardest procedures she had to go through. She hated that thing. But she was amazing. I think she went in for a ninth, but her body was too weakened by this point to take anymore. This was over the course of about 8 months.