Following are notes from Steve Burton’s stay as a caregiver. Unfortunately, once again he spent the entire time in the hospital with me again. Hopefully next time we will get to actually spend some time together at home.
Wednesday, June 3
Finally, back in Phoenix with sis Melissa. My plane was late leaving Salt Lake so I arrived a little late. Mel had a room full of folk, so Wes and I decided to head to the ranch. After a few beers we had figured out how to cure Mel as well as a solution for world peace. The light of the next day revealed that our plans were not as realistic as I had imagined, so it was off to the hospital to do what I could.
Thursday, June 4
Thursday was very busy. We had doctors and nurses in the room most of the day. Joanne from Dr. K’s office dropped by to check in on Mel and talk to us. She said that the chest X-ray showed enough fluid next to the lung that a pulmonary specialist would come by and discuss what to do. She said we could follow up with Dr. Dietrick, the vascular surgeon, about the blood clot once Mel had regained her strength from her back surgery. We talked about the use of a pain pump, and determined that it is Mel’s decision on if and when to use one. If Mel decides to use one, she can still continue to fight the cancer with all means available. Use of a pain pump does not eliminate any treatment. Mel should also schedule a follow-up PET scan once she is able to leave the hospital.
We had a few other questions that Joanne was not sure about, so she committed to having Dr. K call us in the late afternoon. The pain docs came by and said they wanted to start moving Mel to oral pain meds, as this was a prerequisite to go home. Mel let them know she would not be ready for the oral meds until she was able to get up and move around without feeling severe pain. Mel did agree to change her anxiety med from Lexapro to Cymbalta, as Cymbalta is more effective for sleep, anxiety and helping the pain meds. The nurses have been good at checking on Mel’s skin and using the SensiCare cream.
We had a very productive afternoon working on the Web site, its branding and color scheme, as well as some of the products that will be offered. We met with the pulmonary specialist in the late afternoon about the fluid buildup around Mel’s left lung. The decision was to perform a thoracentesis. A thoracentesis (also known as a pleural tap) is an invasive procedure to remove fluid or air from the pleural space. This is the space next to the lung. First a local anesthesia is administered, then a needle and/or tube is inserted to remove the fluid. At the end of the day Dr. K called. We asked about the use of Cyberknife on a few of the more significant tumors, such as the one in her right femur. He said the radiation was already fairly targeted, but it would be worth mentioning to Dr. Brockman, the radiologist.
We also asked why he thought the cancer was progressing ? Had he seen something specific in the CT scans or MRIs ? He said the cancer was considered to be progressing because of three things. First, the fluid buildup next to the lung was a sign of active cancer. Second, the continued problems with the blood clot were also a sign of an active cancer. Third, some of the scans showed additional bony lesions. These three things are indicators that the cancer is progressing. He emphasized that he had not seen a large increase in the numbers of tumors, or seen them in new locations, and that the areas where Mel has been having the most significant problems are the areas where the cancer was first found back in January. The follow-up PET scan should tell us more.
In the evening, Wes and I went out and got not just a pizza, but a ‘Z’ pizza. Only the best for Mel. After several hours of lively conversation and a boring NBA final, Mel was still going strong but Wes and I were tired, so we all called it a day. Mel continued working on the Web site until the wee hours of the morning.
Friday, June 5
When I arrived on Friday, Mel was already awake and working on the laptop. She said she had not slept well last night. I think she may have been over stimulated from the good conversation and computer work of the night before. The transport people came at around 10 a.m. to take Mel down for her thoracentesis. She stood up, and with a small amount of help, walked out to the hallway to get into the transport bed. This was her first significant walk in awhile, and was a good first step toward building up the strength that will be needed before she can switch to oral meds and go home.
Mel was back after about two hours. They removed about 500 cc’s of fluid. They said this type of fluid buildup is fairly common for cancer fighters. This afternoon we got a call from Mel’s friend Molly at CTCA (Cancer Treatment Centers of America). They will fax over the initial paperwork, and we have a conference call scheduled for Monday at 10 a.m. After lunch, Mel was able to go to the bathroom for the first time since I’ve been here. Another step (or sit ?) toward going home.
We continued to work on the Web site for the rest of the day. Late this afternoon the internal med doctor said they would leave Mel on the IV-based pain meds through this weekend so she can continue to build up her strength. We will switch to oral meds on Monday. Mel finally fell into a deep sleep, so I had to pry the laptop from her fingers. Once she awakes I am sure we will continue on the project, as we need to upload about 300 megs of pictures to the Web master.
Saturday, June 6
Once again, Mel was up and at the laptop when I arrived. She was clearly feeling better than she had a few days ago. Transport came in the morning to take her for a chest X-ray to check on the result of her thoracentesis. When Mel came back she felt well enough to take a stand-up shower. I greatly appreciated this, as there is not enough air exchange in the room When Mel was finished with her shower, we had a physical therapist come into the room to work with Mel on how to properly move, flex, and build up strength, while protecting her back. The physical therapist emphasized no BLT, as in do not Bend, Lift or Twist.
I found this simple method useful for irritating Mel for the rest of my visit. I could now critique her every move. But seriously, it is very important for Mel to somewhat restrict her movements. Her hips and shoulders should always be in alignment, and she should always use both of her arms equally when she is going to move her body weight. Sometimes Mel will get a little impatient and move suddenly with a kind of jerky movement. She needs little reminders that for now, she needs to think about how to properly move before she does move.
During the afternoon, Mel had a few visitors including Debbie Wing, who for a while was Mel’s surrogate mother. It was great to meet her and listen to her stories. Wes came by after work and he and I took Mel for a wheelchair ride out to the healing garden. It was the first time Mel had been out of the hospital in some time, and we all enjoyed it. When we went back in, Mel took a walk down the hall.
Sunday, June 7
Believe it or not, Mel was on the laptop when I came in on Sunday. Deb Wing came by and visited some more. After awhile, I went out to get lunch, but Mel’s appetite was not as good as it was yesterday. Mel and I discussed the pros and cons of a road trip to California that she would like to plan. She decided that she would hold off for a while to ensure her back has regained enough strength to take the potholes on all the state highways. We worked on the Web site, and prepared for our call tomorrow with the Cancer Treatment Centers of America (CTCA). In the late afternoon, Dr. Biib came by. We talked about Mel’s second line Tarceva treatment, her next Zometa treatment, and the result of the thoracentesis. He had reviewed the X-rays taken after the surgery and noted that everything looked good, and that they had been able to remove most of the fluid. They sent some of the fluid out to a lab for testing to ensure it was caused by the cancer, and not by an as yet, unknown complication. They will continue to monitor for fluid buildup.
Monday, June 8
When I came in, Mel was looking lively and vivacious! She had already been up and walking with Marsha, a physical therapist. What a difference from when I first arrived. Mel continues to bounce back strongly from surgery. Marsha thought that Mel’s flexibility was really good for someone who had spent most of the last month in bed. She left Mel with an outline of stretches and exercises that Mel can do while she is in bed, and encouraged her to go on short walks during the day. “Mel should exercise to her level of tolerance, not to a level of pain”. The pain docs came by, and after talking with Mel decided to keep her on IV-based pain meds for one more day.
We had a conference call with Molly and other people from CTCA at 11 a.m. Mel has already sent out an e-mail detailing what was said, so I won’t repeat it (I can hear the cheering). I will say that the main benefit seems to be a better-coordinated, holistic treatment plan with a heavy emphasis on nutrition, rather than any new specific cancer treatments. The downside is that they won’t be accepting Mel’s BCBS policy until October at the soonest, and that their overall cost might be significantly more expensive, for mainly nutritional advice. After our call with CTCA, Mel went out for another chest X-ray. When she came by, she did say that one of the side effects of Tarceva, diarrhea, might be kicking in. If this continues, it may require a change to her level of meds that assist her in going to the bathroom.
I left the hospital at around 2 p.m. to drive to North Scottsdale for a meeting with the Whiz bang Group. They are a marketing firm that is working with Mel on her Web site. I delivered a flash drive with some pictures Mel had given me and talked to them about some of the changes Mel would like to see. I suggested it would be really beneficial to drive down to the hospital to see Mel in person to review the changes. After the meeting I went back to the condo and cleaned/washed everything for Megan. Then it was off to the airport.
Link to blog: http://themelissawaller.wordpress.com/2009/06/12/steves-caregiver-log-june-3-june-8/