Chaos, part 2

I wasn't planning on writing ANOTHER post about chaos, but alas I must, because yesterday happened.

Yesterday Max and I drove to Eugene at 7:30, for my 9:30 check in time, and 10:30 lumbar puncture appointment. When I got there, I assumed they would need to do blood work, because all of my counts are very low from the chemotherapy. I got a platelet transfusion the day before yesterday, so that they would be high enough for the lumbar puncture to happen. I got my blood drawn, and was told that the people performing the procedure were ready for me as soon as my blood work came back. When we got my blood work back (1 hour after procedure time) I was told that my platelets were too low, they were 39 and needed to be 50 to do the procedure, so I would need to have another platelet transfusion before they could do it. My doctor doesn't work on Fridays, but they had to get the "OK" to do it, so they contacted another oncologist at my clinic. He said I was fine to have the procedure, because they couldn't give more platelets unless I was below 20. However, the doctor doing the procedure still wasn't cool with that. So apparently I'm in limbo if my platelet count is between 20 and 50, and nothing can be done (or it was just a disagreement between doctors, we'll never know...) Unfortunately, it took us 5 hours to come to any sort of conclusion, before we gave up so that I could get my chemotherapy infusion over at the clinic before they closed.

Getting chemotherapy is usually very straight forward, however, on Tuesday when I went in to receive my lovely Vinchristine (the one that makes my fingers numb) and PEG-Asparaginase (A high likelihood of allergic reaction) I was only able to get the Vinchristine because a delivery had been delayed and PEG is an uncommon chemo drug so they weren't able to get it from anyone else in town, so it was rescheduled for yesterday. There weren't any nausea drugs prescribed to go with this chemo drug, and they also didn't have any orders to give Benadryl with it in case of an allergic reaction, so I was thankful to have done my research beforehand so that I could speak up and get all of that done. This did slow the process though, and with those extra orders to the pharmacy, plus a 1 hour infusion, and then 1 hour of observation afterward to be sure that I wasn't going to react, we were able to leave the clinic by 6:15, over an hour after they had closed.

So, long story short, we spent 12 hours yesterday and I only ended up getting 1 chemo drug. I now have to reschedule my Lumbar Puncture, the problem is that they are supposed to be 7 days apart, and my next 2 are scheduled for the next 2 Fridays, and I'm already a week behind schedule because we delayed because I still had the headache last Friday.

I've got 3 potential appointments next week, but I don't know times or any details until I hear from the doctor on Monday morning. The waiting game continues.

I just love these Emily McDowell Empathy Cards... 

The good news:

• I feel pretty darn good. My headache from the last lumbar puncture finally went away. 
• The doctor told me on Tuesday that he wouldn't be surprised if I spiked a neutropenic fever this week because my ANC (absolute neutrophil count) is only 20 (normal range is anywhere from 1,600-8,300), and the longer a person is neutropenic the greater risk of infection (I have been for almost my entire treatment) and I DIDN'T!
• I have been given permission to get blood work and transfusions done here at the hospital in Florence, so that means much less driving! 
• I'm almost out of hair to shed all over everything, but that means that I might cave here soon and completely shave my remaining hairs. 

In other good news, I have my moments of being scared out of my mind, and thinking "THIS ISN'T FAIR", and avoiding thinking about the future beyond all of this chaos (I see a blog post about all of that in the near future)... but mostly, my head is in a good place, and I am so appreciative of all the people that are supporting me on a daily basis. In the beginning I was swamped with people reaching out, and that was awesome, but now I am even more thankful for the people who continue to reach out. "Is there anything I can do?" is a great question, but it's not something I can always answer. "I'm coming over with snacks to watch a movie, pick the day." is something that is much easier to respond to, I can't make many decisions very easily right now, but choosing a day that I have free is something I can do. Either way, I am so thankful for all of the positive people in my life. They make this a lot easier.