Following are caregiver notes from cousin Laura’s stay:
Laura H’s Caregiver notes
Wednesday, July 1
Arrived at 8:00 a.m. and see Melissa. Wow!! She looks great!! It feels like I had just left a few days ago, but she’s been through a lot since I was here last.
We left right away to Cancer Treatment Centers of America to her MRI appt at 8:30 a.m. for a brain scan. They pre-medicated her before and said she had no reaction during the scan, nor did she have any the next 24 hours. She was very sleepy afterward and it took awhile for her to wake up. We then went to the cafeteria for lunch. Melissa and I ended up sitting with the marketing dep't for CTCA and they asked if she would like to be interviewed in the future regarding her care there.
During her MRI, nurse Bridgett of Dr. He’s office called (her oncologist) and she wants to switch her from Prevacid (for stomach discomfort) to Rantidine, generic for Zantac. He just received a study that shows Prevacid inhibits the effectiveness of Tarceva by 46 to 71 percent!! Somehow antacids like Prevacid effect the absorption of Tarceva, but Rantidine only effects the absorption by 15 to 17 percent, if taken exactly two hours before Tarceva and 10 hours after Tarceva.
They immediately called into the pharmacy Rantidine (one office down) and presto!! It was done in a half hour. They had this all done before she woke up after MRI. This place is awesome!! What a blessing!! Yeah. Instead of having family searching for all this info, there are people there updated on the latest it seems.
After all her appointments, she can go eat and drink at the cafeteria close by, and/or she can rest upstairs in a room until the next procedures if any. At CTCA, they have everything there to take care of Melissa. They start with a care manager and have mind-body medicine, naturopathy medicine, nutrition and metabolic services, pain management, pastoral care, rehabilitation services, chemo and imaging…all in one place!!! The people there are so sweet and helpful too.
Ok, enough promoting this place. I’m just so excited for her! Last I was here, we were trying to get to numerous appts and managing meds…while her and family were looking for the best treatment. Yeah! Great job Waller and Burton family!! You have such great family, friends and caregivers for support. Praise God!
At noon, Melissa had her next appt with radiation, where they did marking and simulation to prepare her for the next day and others for radiation of her lower back area.
After getting home, Melissa slept most of the day and night…she was very exhausted.
Thursday, July 2
9:25 a.m. we arrived for her first radiation appt and the machine went down, delaying treatment. We finished around noon and went home so she could take a nap. She slept most of Thursday as well, commenting on how she’s so exhausted and nauseated off and on. Her pain level, though, has gotten much better and she says she a lot more mobile than last week, although super tired.
Friday, July 3
No radiation or medical appts were scheduled for today, probably due to July 4th coming up. Melissa slept a lot in the morning and still had nausea throughout the day. In the afternoon, we took her to get her nails done and after that she went to sleep. Today, however, she was able to stay awake more and take care of some paperwork. Her swelling in her right thigh and foot went down significantly. She was able to wear shorts today and commented it had been awhile since she could get them over her swollen thigh and wear them. Her pain level was doing good. However, when she was resting on her side, she said she awoke to her body jolting and felt a pain in her lower right back. Since then, however, it's been good and no problems up until July 5.
July 4th Independence Day!!!!!!!
We went on a walk this morning to 7-Eleven. After leaving 7-Eleven, Melissa had to sit down and threw up. She said she felt much better afterward, however, and she attributed it to getting sick from taking lots of meds in the morning, the heat and not eating before taking her meds. She felt bad she got sick and I told her hey, don’t even feel bad. Remember when you took care of me out here years ago when I got sick after we went out dancing?
In the afternoon, Melissa was still exhausted and nauseated and called CTCA to see how they could help her. We arrived and asked for blood work to be drawn to check her potassium levels. The phlebotomist, after taking her blood, had some kind of hand-held device that checked her RBC count, blood sugar, vitamin and other levels. He waited for like five minutes and voila! He had results of her blood test. Her potassium was a 3.3 and should be 3.5, so a little under the level but they gave her a drink and said she’d be fine. Blood sugar was good and they said her RBC was not too low either. They said a WBC would take longer and would need to be done in a lab, though. So all blood work came back good and we received back a copy of it for her records.
Most importantly, the doctor on call (Dr. Jalal Abbas) also looked at her MRI brain scan results and said cancer hasn’t spread there…yeah!
They treated her nausea there with a pill that went under her tongue called Zofran, at 8 mg. He also went over her medications and the doctor cut back on a few meds. He said maybe that will help with her energy level and reduce her nausea. We will see how she feels within the week.
First he said he’ll wean her off Cymbalta, since they both discussed her anxiety level was good and that this medicine helped in the beginning in dealing with St Joe's and stress. She’s to take one every other day, so July 3, 5, 7, 9, 11, 13, and then stop. Side effects in weaning off can be instant night or day sweats, dizziness and also feeling out of it and spaced out too. Next he said to only take water pill Furosemide when swelling happens. When swelling goes down, stop taking it. When she takes a water pill, she needs to take a potassium chloride pill with it too.
He also said stop antibiotic Minocycline (minocin), since signs of cellulites infection are gone. He also said to stop Neurontin (Gabapentin). This medication is mainly for inhibiting nerve-ending pain like burning sensation or numbing, which she doesn’t have right now.
We filled up her meds for the week and Melissa was moving her pills down to two morphine at 6 a.m., 2 p.m. and 10 p.m. She was to try now two morphine pills at 6 a.m. and two at 10 p.m. I will remind her to take at least one at 2 p.m. so her pain threshold doesn’t get high before 10 p.m. She’s also taking methadone in conjunction, since they will be weaning her off Morphine most likely next week and then moving her to methadone. This will be done in the hospital, maybe around the time of her surgery. Today’s on-call doctor said she can come in any time to get that started. I think it would be best before or after surgery, but not during. We find out when she’s in pain how its working or having some kind of morphine withdrawals?? Not an expert, but makes better sense to me. Her pain level is doing good today, except for some back pain in the evening. Her swelling in legs still looks good.
Today Melissa was awake more and we all had dinner together. I shared with her the last time we went on a walk in February and saw the hugging cactus, that I found a heart shape rock in front of it. I brought it this time to give to her, along with another one I found outside of her house! Very similar shape.
Sunday, July 5
Melissa looks well-rested and slept well. Today I’m leaving, so I'm glad her days have been filled with much rest and comfort as compared to last time. Her swelling in her right leg is down today too. Yeah!! She has radiation appts every day this week coming up.
Link to blog: http://themelissawaller.wordpress.com/2009/07/10/lauras-caregiver-notes/