Day 1 was a hard day.
Tuesday morning, August 19, when we got up we had another procedure to prepare for. She would go under general anesthesia and have a portocath placed, a lumbar puncture, to check her spinal fluid for any of the tumor cells, and her first dose (and that's first dose as in first day of treatment, Day 1) of chemo injected into her spine. She also ended up having an echo done at the same time. It was a lot.
One of my favorite parts was when they'd say, , "it's at 10." "No, 12." "No 10." That kind of stuff happens a lot around here.
They wheeled her downstairs and let me go along. The bed they put her onto was skinny so I stood with her and people were shuffling around. Then I notice the nurse anesthetist start putting medicine in Mary's IV. As I always do I asked what it was. It was the drug to put her out. Before I knew it they had her eyes taped and they were incubating her. I wanted to scream, "Wait! I can't be here for this!" I turned around and finally got the attention of our nurse and just said, "I need need to not be here." She quickly ushered me out, not only that but she ushered me out with someone talking to me. That nurse began to explain the portocath procedure and by the time we got into the hallway Karen (a.k.a. Granny, a.k.a. my mother in law) was walking toward us.
When the nurse went back to her duties Karen set her things down and then demanded that I hug her. And thus began another pressure release. I was so grateful to have her with me to talk and make plans.
When Mary was done and they came they got me as they wheeled her to recovery. And the the fun really began. She was extremely agitated. She even kept telling Granny to go! Not wanting to upset her more, and having lots of things to do (she has been me while I'm away) she left. I had the iPad (don't know what we would do without that thing) so I put on a movie to distract her. She was having a difficult time keeping her oxygen up. And she wanted nothing to do with anyone who would try to put anything near her face.
They eventually brought us up to her room. She did settle down some but she still needed some oxygen. I began having flashbacks to when she had her tonsils out and she struggled in the same way which led to pneumonia. That scared me more than anything, she has nothing to fight off the pneumonia with. The whole afternoon kind of went along the same way. Watching her closely, adjusting her oxygen mask when needed.
Meanwhile I had another visit with Dr. T. She handed me a pamphlet that said ALL. We finally (sure it's been about 48 hours at this point but it felt so much longer) had a diffinative diagnosis. Acute lymphoblastic leukemia. If a leukemia could be good this would be it. It has a good prognosis and it's much easier to treat than other leukemias. What a tender mercy. Then she handed me a calendar. On it is mapped out almost every medication she will get for the next month. I know it sounds strange but that calendar makes me so happy. I can't wait to get home and laminate it. There was a lot more information overload, but she promised me that she would repeat everything she was telling me over and over until I got it.
That evening David brought the kids up. I was so excited to see them. I think William grew in the two days since I saw him last. We chatted and ate and Mary either dosed or watched movies. They didn't stay long and she did give them hugs when they left. Before they left, I wanted to talk with them about what was going on. Just the night before, on the phone, Ruth had asked, "How's Mary? Have they figured out what's wrong" it nearly broke my heart. For this first visit I kept things simple and straightforward and matter-of-fact. And that's just how they took it. I was so proud of them both.
After they left Mary continued down hill. Struggling more and more to keep her oxygen where it should be. She was so tired and and, in a word, ticked with being constantly messed with. She has meds she has to take by mouth twice a day. Taking pills isn't as big a deal as it may seem. Prior to this she had been on iron for about two months. She was at the point where I could hand her the pill and she would put it in her mouth and swallow. Being in the hospital though has made her a bit less compliant.
That night as I was trying to give her the first pill, holding her down, she went wild. Screaming, fighting, kicking and even digging nails in my arm. And then she pulled the tube going into her port apart which added blood to the battle. The nurse worked quickly and help came fast to get things back together.
From that point we've crushed her pills and put them in a few bites of applesauce. I rotate bites with the "plain" applesauce and the "med flavored" so while annoyed she still takes them.
The night continued as it started, crazy. Her temperature went up, combined with the oxygen issues. A chest X-Ray was ordered, plus blood cultures and blood work, most of which could be taken from her port. Again I was having flashbacks to her week with pneumonia. It was intense, it was stressful and it was down right scary. They finally gave her LASIK, since she had very poor output. In the end that's what did the trick.
Here's what I think happened. There was the perfect storm of the general anesthesia, her sleep apnea, her low tone, plus all the stuff they're pumping in her.
By around 11:30 she finally settled. They got a different type of oxygen mask which kept her consistently where she needed to be. She slept pretty much the rest of the night. Of course I was so wired it took me a long time to be settled and calm.
I kept thinking of her fighting me over those meds. I tried to be patient but all I kept thinking was how I need her to scream and kick and dig her nails in. I need her to fight. I need her to fight hard.
Although it would be nice if she wouldn't fight me.
xoxoxo
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