Rory Medical Update

Just throwing out a quick update from the last couple of days. Will throw out another one this weekend after chemo Friday.

 

Monday started with me in a panic going through the house looking for the girls. I had an extra bad night and had just a couple hours sleep. I woke up because I heard the mudroom door open and close a couple of times. My brain looked at the clock and told me it was still the middle of the night (although it was really 530) I couldnt understand why the girls would be leaving, or what was wrong. I looked through the whole house for them and then finally just before 6am my brain finally registered that everything was fine, and that the girls had just left for seminary. I went back to bed and cried. This was just one more extreme of my brain being non-functioning. I have found over recent weeks that my loss of short term memory, comprehension/retention, thought process has been increasing. I tell myself I know that it is just the chemo drugs, but it doesnt alleviate feeling so unsettled, it just reassures that I am not going crazy. At least the girls have gotten better at finishing my sentences most of the time when I come up empty 1/2 through asking them to do something.....

 

Later Mon AM a quick phone call to one of my nurses confirmed what I had suspected from being extra sick still over last weekend - I was dehydrated. It was a pretty intensive phone call with lots of ??? coming from my nurse. Apparently, looking back over my medical log, I was dehydrated almost from the beginning of LAST week. Just with all the other stuff I was dealing with, never realized that it had snuck in too. We set an appt for me to go down to the hospital to get fluids and meds. I spent most of Monday in bed again, still down. I worked at the BRAT diet a little over the course of the day trying to stablilize myself and pushed lots of fluids. Also spent a mostly sleepless night up watching movies since it was all the energy I could expend even though I was wide awake....

 

Tues AM I was surprised to find that I was feeling better. I made another quick phone call to my nurse and our conversation confirmed would still be really good idea to still go down. It really was a good thing that I did. I was still showing some big signs of dehydration, including having a migraine come on while I was down there. My nurse spent alot of time with me, both of us going over my log and me filling in what last week was like. I was able to get some juice and Tylenol into me too. Appt took a little longer because my nurse had to keep playing phone tag with Dr Mcgregor's nurse, who called her at her other office, who called back in turn, etc, to try to get my nausea meds ordered (new orders had only included fluids because I hadnt had any nausea until this last week). I had a good couple of hours to just sit and rest and chat with my nurses. We were able to make good plans for Friday and plan other appts for fluids/meds over the weekend and next week. Will be good to just have those on the books, esp if we expect things to be as bad or worse for this last go around. So very blessed that I have such good care down there. I was still extra tired by the time I was done, but definitely feeling much better.

 

The highlight of my day Tues was that I got to take my sweet friend to lunch for her bday (her bday is not actually until next week, but since we know I will be down we went yesterday). We had a wonderful time talking, and laughing about all the kids' recent antics and adventures. I have really come to look forward to these lunches together. We just get missing each other, and it is great time to just catch up, plan, visit, laugh, and sometimes cry together. It has just become something special just for us. I was really surprised (though I shouldnt have been) at how ravenous I was. As we sat and talked I finished a huge omelet, hashbrowns, 2 whole pieces of toast, hot chocolate and 2 glasses of water. I guess after not eating/drinking much at all over the last week, my body was making up for it. The one downer of my choice of lunch (which tasted fabulous) was that around 330am my tummy decided it was not so fabulous after all. I finally got up to deal with it about 4am and didnt go back to sleep for a couple of hours...

 

We ended up with a bit of a rushed exodus out the door this morning for appts. Sweet Sis JT #1 and Miss Mo came to pick up the boys to transport them for me today. Was such a huge relief to know they were getting where they needed to be so we could get down to appts. Kaeli had an ortho appt and Preston & I met with my surgeon today. Kaeli had a great appt and got new wires and bands. She is making great progress. She even chose multi-colored green rubber bands in celebrating of St Patrick's Day this month. Our appt with my surgeon also went really well. A quick exam was extra encouraging and both we/my dr think that we are going to be able to go with the least invasive surgical option. That is what we are going to shoot for. The only thing that would change that would be getting in there and finding issues with the one node that was originally there. It doesnt seem to be there now though, so that is really good news. I tried to get my brain to think long enough to ask all of my ??? about next steps coming up. I know I didnt remember to ask them all, but here is the current plan of attack: MRI is being scheduled for the end of this month. Surgery date has been set for April 5 and will hopefully be just an out-patient thing. Extra thankful Sis JT #2 will be working and will be there with us through everything. I will get a 4-6 week "rest period" to recover from surgery and meet the oncology radiation team. Radiation will start in May and will include treatments at the hospital 5 days/week spanned over 6 weeks. We were also excited to find out that I wont need a 2nd surgery to remove my port, they will do it right in the surgeon's office, which was a huge relief. When surgical stuff is complete I will again meet with Dr McGregor and go over the long term plan for the care I will need the rest of my life probably....

 

Kaeli and I picked up the boys from a sweet friend who took them for the AM. She has been our "pitch hitter" recently, and has come to the rescue at last minute notice. The kids are happy there, and both of these things make it so much easier for me to need to be away. I came home from appts/driving and took a 3 hr nap. Just seems so silly to me that I can sit on my rear for so many hours and come home completely spent. The girls try to reassure me, but it still bothers me. We didnt get anything else done today.

 

Still feeling pretty crummy, but still hoping to get to a special RS dinner tonight. Christy is coming to pick up me and Kels since it is one of those nights where everyone is going different directions and there are not enough cars to go all those directions. Hope it will be a nice evening. Feeling a bit anxious since I havent been around anyone again for awhile. I am sure it will be ok, just me still feeling a bit out of sorts about everything.

 

Guess that is all for now. Will plan to do another post over the weekend, hopefully, so we can update everyone about chemo and such. May have Preston be in charge of posts next week if I am down as bad as this last time.