Not too much has changed from the "normal" routine mentioned previously. A few nights ago, she came out to watch Enchanted with us. The next night she came out to watch Dancing with the Stars and then directed some picture hanging. The NC house is slowly but surely becoming a home. After returning to bed, Christen, Lauren and Carole joined her to watch The Bachelor - ahh, guilty pleasures. We've also played a couple of hands of euchre with her, and Lauren was playing a game of rummy with her one day. Carole started her doing some stretches and made some notes so we could keep doing it after they left on Tuesday. Kathie's been pretty good about doing them - though sometimes she'll keep her eyes closed while she does them;)
Thursday, Kathie had a full day. EARLY in the morning, Bob, Kathie and Lauren made the trek to Wake Forest Baptist hospital for an x-ray and meeting with Dr. Aklilu. The x-ray did show more fluid and Kathie was scheduled to treat the pleural effusion (fancy name for fluid in space surrounding the lungs) - aka, she's having it drained and then a catheter will be left in so she or we can drain it when she's at home if she's having difficulty breathing. Since her right lung barely sounded like it had air going through it, we're hoping this will enormously relieve some of Kathie's breathing troubles - but there are no guarantees.
The meeting with Dr. Aklilu was what I suppose we all expected, but not what we hoped for. He maintained his earlier conversation with Kathie, that the cancer is taking over and standard treatment is off the table. (A night or two before the appointment, we had received a very unexpected call from Dr. Eng - her oncologist from MD Anderson, telling us about a clinical trial opening up - but she wasn't fully aware of the current situation). We asked about a couple of alternative treatments, and he said he supported trying alternatives during this time, since conventional chemo had failed her. He also reminded us that being in hospice care did not mean one was dying tomorrow. Dr. Aklilu did not estimate any time - but he also did not take back his statement that he made to the family at the hospital. Either way, the chat with him was good, and gave Kathie a chance to clear up things that she couldn't remember from the hospital. This is also where they chatted about the pleural effusion and the catheter and how it will hopefully help with her breathing to make her more comfortable.
To check on her blood coagulation, she had to have some blood work done. She had some done by hospice two days before the appointment, but the results hadn't reached Dr. Aklilu by the time of the appointment, so he was requesting his own tests. Kathie hadn't anticipated having more blood work, so she hadn't numbed her port so Dr. Aklilu's assistant, Suzanne, made an appointment at the Lexington clinic that is partners with them. Kathie had about a 2 hour break at the house before getting back in the car to go to the clinic and then Bob, Kathie and Lauren waited about a half hour before she was seen. Needless to say, at the end of the day, she was pooped.
The blood tests showed she need to come in early before her procedure to boost up her blood coagulation. Kathie will get checked in tomorrow (she seems to have something for needing things done during holidays... Memorial Day weekend - diagnosis, Christmas -hospital for sinus infection and now Easter) to give her something to increase blood coagulation and then the procedure will be done on Monday to remove the fluid.
The next step is for us to see where hospice stands on some of these alternatives. Since they are not recognized medically, we're hoping it will not fall under the effort to "prolong life" even though that's pretty much exactly what they are. During the last chat with Tammy, our hospice nurse, on the subject - she reminded us that this branch is also palliative care and that even if you leave hospice, you can change your mind the next day and re-enter it. The final call is up to Kathie in the end. She still seems to have a bit of fighting spirit - but it is about weighing the pros and cons and if doing any additional types of treatment will really add to a better quality of life.
There is also the issue that Kathie has started to develop a little bit of yellow in her eye - not usually a good sign. She has also started to "sleep talk" more - she won't wake up quite as often, and even when she does seem kind of awake, she'll say something that doesn't exactly make sense. That being said... an hour after saying some things that did not make sense to us... she completely woke up and wanted to go sit outside.
We got her in her geri chair and made up some margaritas:) Bob, Eddie, Christen, Ben and Lauren sat outside with her and sipped on margaritas while chatting (Lynette and the girls left in the morning for Eddie and Melissa's house because they had an early flight out Saturday morning). Mostly, we talked about how none of us would have gotten through school without her (or at least our projects would have gotten worse grades;) ) It was an absolutely gorgeous day overlooking the lake. She was outside at least an hour and was awake a good part of that.
This one is pretty cute, and shows she was awake and did smile;) The other one is Christen toasting with Kathie - she smiled at some point during this, but my camera is slow, and didn't catch it.Before Lynette and the girls left, the girls got dressed up in a red polka dotted dresses that Kathie had gotten for them and took a picture with her and an old Shirley Temple doll who was also wearing a red polka dotted dress. It was pretty adorable too.
Posted by Lauren
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