How am I?

For my second request, Monica asked me to write about how I'm holding up.

I typically try not to make this blog too much about me, because I want to turn it into a book at the end of Matthew's cancer, and I want it to be for him. I'm the writer of the family, and I'm the one doing the blogging, but everyone is handling it differently, even Justin and I. And I think everyone deserves credit for holding up the way they are. Especially Justin, who has to go to work all day while the rest of us get to stay home with Matthew.

With that said, I do think it's important to show the emotion of it all, and since I am the writer in the family, I try to slip some of that into each entry. Plus, there's something to be said about the way a mother handles something like this. Us mothers band together. I've joined a support group on Facebook that sadly grows at least a couple of times a week. It's made up of mothers of cancer patients who are being treated at Primary Children's, but not necessarily all of them. Right now, there are 104 of us.

The whole first month that Matthew was sick, no doctor ever did any kind of a test to identify the problem. He had a fever for 32 days, and before our hospital stay, only one doctor mentioned how bad of a sign an ongoing fever is, and he still didn't order any tests. He gave Matthew a shot in his leg, a much stronger antibiotic and said to call our primary care doctor if it didn't get better.

That month was really frustrating and upsetting to me. I suffered from insomnia. My work began to suffer. I didn't do my calling the way I should. My house was even messier than usual. The last doctor we saw set up an appointment with a specialist at Primary's, but it was 18 days out. He told us that he thought we should go to Primary's ER the next time Matthew's fever went above 102.

I thought that would be no big deal, since it did that every day, but instead the fevers hovered around 100 for the next ten days. That same doctor gave me a list of illnesses that could cause what Matthew was experiencing, but the one that rang out loud and clear was Lymphoma. Over the course of those ten days, Justin and I both convinced ourselves that this was what was plaguing our son. Justin didn't want to talk to me about it, because he didn't want to worry me. I researched it too, and I was a basket case. I didn't want to tell Justin because I didn't want him to think I was a vicarious hypochondriac. I started hoping that his fever would shoot up so we could get to the ER already. Then I felt horrible for hoping my son would get a high fever! Our fear was that if it wasn't high enough, we'd pay the $150 co-pay just to be sent back home.

It was a very long ten days. There were two times that his fever went above 102, but before we could arrange to get to the hospital, it went back down again. Then, on the night of July 11 - actually at about 3 am on the 12th - I woke up and he felt really hot to me. I took his temperature and it was 103.8. Rather than waver about going to the ER, I just woke Justin up and said I thought we needed to go. So, we got in the car and went. In retrospect, I'm so glad I did. His appointment was still 8 days away, and that makes a big difference in the world of Acute Leukemia. I don't think I'll ever hesitate to go to the doctor again.

In the hospital, I found my own special kind of crazy. Justin was really upset before we had numbers and statistics about Matthew's diagnosis. I was too, but I felt confident that whatever happened, Matthew would live through it. So, I wasn't as scared. I thought I was "broken" because I didn't cry as much as it seemed like I should.

Then I discovered that my reaction was a little more -- unusual. I simply couldn't leave Matthew's side. It made me feel physically sick to think about it. They only allow one parent to sleep in the hospital room, and so we were going to take turns. I was first, and then when it was Justin's turn, as the evening wore on, I started to feel panicky about leaving. Justin wanted me to go buy us some burgers, and I couldn't stand the thought of leaving for even that long. Thankfully, Justin was okay with going home again to sleep, and I stayed again. By the third night, I was a total mess. I needed a long shower and I needed to pack my own clothes, and I needed a night of sleep that didn't involve medicine and vital signs for my angry child.

After quite a build up, I finally left the hospital at 11 that night. I waited until Matthew went to sleep, with the intention of coming back before he was up the next morning. When I started driving, I realized what a mess I really was. I took a few wrong turns, and drove clear out to the airport before I made it home. Then, since it was the first time I had really seen my other kids, I wanted to spend some time with each of them. Mikey was in bed asleep already, but the girls were still up. Allison had TONS of questions, so I explained it all to her, and really helped her understand it. Alaina didn't have a lot of questions, so I badgered her about not hiding her feelings about it. We were in the girls' room talking, and a couple of times, the girls pointed out to me that they could tell I was really tired and I should go to sleep. I guess I wasn't making much sense anymore. Finally, at about 2 am, I was slurring my words. I was trying to explain something, and I literally lost my train of thought in the middle of a word. I looked around, and said, "I should go to bed now," and I got up and went to bed. Allison came and slept in my bed with me, because she wasn't sleeping well. I slept until about 9 am.

I thought I'd be mad at myself for sleeping in longer than Matthew, but I couldn't be because of how badly I needed it. I spent a little bit of time with Mikey, then I did a load of laundry, took a long shower, and packed up my clothes. I was back at the hospital at about 11 am, and I didn't leave again until we were discharged 3 days later.

I'm still suffering a bit from that same kind of separation anxiety. I don't like to leave him for long. I went to a book group that some friends invited me to, and I had to check to make sure no one had a cold before I could bring myself to spend the evening among a crowd. I still brought a mask in my purse, just in case. It'll be interesting when it's time for me to go back to work.

Don't get me wrong, I cry. Some days, that's all I do. The first day like that was the day Justin went back to work. I heard about a boy from my support group who was given a few weeks to live, after a year of remission, and it set me off. He had just gone in for a checkup, and everything went wrong. I cried all day. For like 8 hours straight. Finally, Matthew said he didn't want me to keep crying, and I couldn't stop, so I took a happy pill.

Now, I am NOT a happy pill kind of girl. I'm so afraid of becoming dependent on them, and bottling up my emotions because the pill won't let me work through them properly. But if he is worried about upsetting me, he won't be honest about his pain or discomfort, and I need to be able to help him. So, I let go of my concerns, and just took one.

There have only been a couple of days like those. For the most part, I keep in control, or if I cry I can manage to stop myself eventually. It's stressful, but you adapt. At first that one word - cancer - flips your whole world upside down, but then you adjust the way you're living your life. Things that were important two months ago just aren't anymore. Things that I didn't know existed replaced them. My center of gravity changed, for sure, but I'm doing okay.

The social worker said it takes about 6 weeks to adjust after a family crisis. Today is the last day of week 4. The last day of induction. We're mostly adjusted, I think. Of course, tomorrow may be a cry day, and I may feel differently. That's okay, I have permission to be crazy for 2 more weeks, right? After that, I think I even have a certain number of crazy cards that I will get to play whenever I want. It's all in the deck when you're a mom of a cancer cutie.