Reporting Live on Friday Night... Again :(

I hope everyone had a great week and is having a wonderful Friday evening. Unfortunately, I wish that I could report that I am relaxing at home. However, I unfortunately have been in the flare since Monday. On Monday, I got my Xolair injections. Since I have been on the Gleevec,  Xolair has not seemed to be helping as much. In fact, it is actually seem to be more activating. When I got the injections, I had some swelling and widespread redness. This has happened quite a few times before, but I normally still feel better within an hour or two, or for sure by the next day. But this time that was not the case. 

I continued to have symptoms on Tuesday. On Wednesday, I was having lunch and had was picking up some of my Mom's favorite cookies. I spoke with them about their allergy policy, and I was extremely impressed . I was told that chocolate chip cookies did not contain any of my allergens, and chance of cross-contamination was slim to none. They warned me that the cookies were made with almond extract. Although I avoid tree nuts, I didn't think I was allergic. I  thought almonds were the most benign out of the tree nuts, and figured since it was just the extract, I really should be fine. I was wrong. I immediately had some symptoms, but it was something that was controllable by Benadryl. 

By that night, I was starting to really not feel well. I was cranky and having other allergic reaction symptoms. I was starting to have some trouble breathing, so I did some breathing treatments at home. I seem to respond okay but I was just very uncomfortable. I had the "Burning Man" sensation again throughout my body, and it kept me up for most of the night. I woke up and my body was covered in head-to-toe with a rash. 

After not sleeping well on Thursday morning, I had a regularly scheduled appointment with my primary care doctor. My friend was nice enough to drive me since I was on too much Benadryl to drive myself. While I was there I had her give me a Benadryl shot to try to make me more comfortable. It seemed to help a little bit, but not as much as I hoped. By the time that I got home, things continued to go downhill. I started having breathing troubles again. I did a breathing treatment, but it did not work fast enough, so I gave myself an epinephrine injection. That again seemed to help. But about 30 minutes later, when it wore off things, started going downhill again. At that point, I had taken all of the medications at home that I could have done, so I had to do a second epinephrine injection.

Even that was not enough. So it was off to the ER I go. This reaction has probably one of been one of my worst ever. They gave me more epinephrine, breathing treatments, and IV meds. That's still was not enough. I required another epinephrine injection. That finally seemed to calm things down, but I had already earned myself a one way ticket to the Intensive Care Unit. Since then I have still been struggling. I have had a total of 6 doses of epinephrine shots. I also have had about eight epinephrine breathing treatments. My last episode requiring injected epinephrine was around 11 a.m. this morning. So, they were not comfortable moving me to a lower level unit today. I am hoping that they will be able to move me tomorrow. 

Since this episode has been so persistent, I have not been feeling very well. I haven't had the energy to move and I'm not able to walk too much. So I am working with occupational therapy and physical therapy to try to gain some strength back. Also, as I get further away from my last dose of epinephrine, that will help as well.  I overdid it a little bit today, and I did not sleep last night, since I had 2 more flares in the middle of the night. So, I am hoping that maybe I won't get some better sleep tonight. In the mean time, I am watching some TV and trying to get some food in me, since that will help with energy as well. The epinephrine and reactions have also been burning through my potassium, so I am getting lots of that as  well. I have been having some miscommunication issues with the doctors as well this visit, but this is something that I again hope is just a speed bump. The nurses have been absolutely phenomenal, and advocated for me 110%. My parents have also brought me plenty of munchies to try to encourage me to eat as well. I have quite a shmorgous board in front of me. 

As the steroids build up in my system as well, that should also bring some relief. As I am sure you can imagine, I am just frustrated to be back here again, and not feeling well. The worst part should be over, and now it is just time (again), and having to restart my prednisone taper. I am still on the fence about increasing my chemo, but we are going to try to take a Xolair hiatus and see if that makes a difference. In the mean time, to try to keep my spirits up, I am watching Brooklyn 99 and taking a break from homework. I had to write a paper today, but I am going to try to let myself edit it tomorrow. I will post an update tomorrow, hopefully NOT from the ICU!