I was gently reminded yesterday (by my brother) that I have not updated the blog recently. I realize it has been a week since the last update. Really sorry about that.
So things are not going so great. I would not say they are worse, just miserable.
Alisa has basically been throwing up every time she stands up. This happened that last round of chemo and it took 3-4 days for her stomach to settle down and get back to normal. I figured we could get through those 4 days at home with nausea medications. Here is how it went down.
Saturday Feb 14th
She was sick all day and so we decided to give her some "food" and water through the feeding tube. It was clogged.
Sunday Feb 15th
Still very sick. Alisa is now concerned she is not getting enough water and is getting dehydrated. Spent the day trying to unclog the feeding tube, even called the Home Health nurse to help. No luck. I convinced Alisa this was not an emergency situation and we didn't need to go to the emergency room to get fluids and get the feeding tube replaced. We could just go to Huntsman Acute Care Clinic Monday morning and they would take care of it.
Monday Feb 16th - Presidents Day
Huntsman Acute Care Clinic is closed for the holiday. Dang. During all this time I am giving her round the clock nausea medications and hoping things will start to get better. I keep telling Alisa that this isn't the first time she has had uncontrollable nausea, she will start feeling better soon. She believes me (or at least pretends to). She gives in and talks to the on-call Doctor in the afternoon. She suggests waiting until Tuesday to come in to the Acute Care Clinic.
Tuesday Feb 17th
9:30 AM - We arrive at the acute care clinic and they give her fluids. We spend the entire day here. They remove the old feeding tube and place a new one. They give her IV nausea medications. They give us the option to stay in the hospital or go home and try and manage the nausea at home. I vote for going home and Alisa agrees. I think she does it to be nice. She doesn't like the hospital but she really thinks there is something more going wrong. I tell her is has now been 4 days since chemo was over and that things will start getting better. I commit to doing better at making sure she is getting her nausea medications on time (one every 8 hours, another every 6 hours). I think with the new feeding tube I should be able to keep her nourished and hydrated.
Wednesday Feb 18th - Thursday Feb 19th
I basically force Alisa's medications for the next 2 days. She is getting 12 hours of feeding tube food and water each day. I sneak some medications she hates through the feeding tube when she is sleeping. we wake up in the middle of the night to give her the medications. She throws up less during the 2 days. but only because she is sleeping, all the time. Thursday night she tells me not to wake her up for medications.
Friday Feb 20th
Without the constant medications Alisa is much more alert and even helps get the kids ready for school (amidst a couple of bouts of vomiting). I decide to go to work for half a day. She decides to see how she does during the morning and call the doctors office around noon. It has now been a week since chemo therapy and nothing is helping her nausea. I have no more ideas. The Doctor tells us to go to the Acute Care Clinic at 3:30. I really hate the situation at this point. I am not sure what else they can do, but I certainly am out of options. We show up and they start fluids and ask if Alisa wants to be admitted so they can try and figure out what is going on. The idea is that if she is in the hospital they can make quicker adjustments to her treatment to find the right combination to make her feel better.. I think they are right, certainly faster than giving us one thing to try, sending us home, and coming back 2 days later with no results.
Saturday Feb 21st
Alisa slept pretty well last night, but the nausea is not really getting better. They are giving her IV meds for the most part. One of the hardest things about this (besides Alisa feeling miserable) is trying to communicate the success (or lack of success) of the current treatment. For example, if Alisa only throws up once through the night, is that better? If she threw up 6 times yesterday and only throws up 4 today, is that better? The problem is that if she is constantly medicated (sleeping) she can go quite a while without vomiting. She kept down 2 bites of apple sauce last night. We want to think that is progress, but I am not sure. She has had a popsicle every day this week, and has thrown it up each time, but did she throw up the whole thing or just 90% of it (keeping down the first 2 bites maybe)? So you see the problem. This is hard for me, because I like to think I know how to take care of Alisa. I wanted us to go home, because I thought I could handle things just as well. I watch them give her the same medications I have been giving her, and nothing helps. Normally they would give steroids at this stage to fix the nausea, but they want to avoid steroids as long as possible because they can negate the affect of the IL2 she has been receiving. I told Alisa last night I would keep my mouth shut because I don't really know what to do (that did not work out perfectly this morning, but I am tempering myself).
So now you are up to date. Sorry again about the lack of info this week. For all the thoughts and prayers, you really deserve more than an update once per week. I will do better.