Chrysalis

Out of the Cave

So apparently my biggest chemo side effect is going to be this horrible black mood that overtakes me about the time I get home and lasts most of the week.  I was not fit company for anyone last week, including myself, and sadly my kid and my mother bore the brunt.  I stayed to myself as best I could, but that's not easy in a 1500-square-foot house where we're all practically on top of one another. 

Thankfully, Mama took Liam home with her for the weekend, giving me three blissfully alone days.  It was a godsend, just in time and just enough time for me to regroup and feel like myself again, and even miss him a little (a sure sign it's time for him to come home).  I am so lucky to have a mother who lives close by so that she can come hang out with me, but I really don't handle having another person in my house all that well.  It irritates the hell out of me that I'm not strong enough to take care of both Liam and myself without help (yeah, I know that's stupid), but I let her handle a lot of the Liam care so I can just rest.   The second day after treatment seems to be the hardest day, in terms of both physical and mental fatigue, and on those days I tend to hole up in my room and not talk to anyone more than is absolutely necessary.  After that I can slowly feel myself returning to what passes for normal around here these days, but it takes nearly a week to get there.

Chemo day itself is a relative breeze, if you don't count the getting up at o'dark-thirty part.  The trip is not terribly difficult; we did encounter more traffic this time, but that's about all.  Once I get to the infusion room and get settled in my assigned recliner, it's mainly just a matter of waiting.  The only physically painful part is when the nurse accesses my port, and that's over very quickly.  Then I wait for my blood work to come back, I wait for my antinausea meds to have a little time to work, and this time I waited for an infusion of calcium and magnesium that's supposed to help with the neuropathy in my hands.  The oxialiplatin takes about an hour and a half; the Avastin takes about an hour.  Then another infusion of the calc/mag, which takes about a half-hour, then the infusion pump for the 5FU is hooked up and I'm done and we're on the road home.  It's a long day, but not particularly difficult.

I explained all this to Liam, who is having a tough time.  I thought that maybe if he knew what my day was like, he could release a little of the worry, and I think it helped.  His immediate reaction was "that sounds boring!" and he's right, which is fine; I'm not looking for excitement during chemo.  And hearing that it doesn't hurt seemed to reassure him, too.  But we have a ways to go before he's really okay. 

Today we have our second appointment with the counselor, and I hope he will agree to talk to her one-on-one; last week he wouldn't.  He was more forthcoming with her than I expected, but not as much as I had hoped.  She's great with him though, and he says that he likes her, so I'm hopeful that she'll eventually be able to help him.  This is all such uncharted territory and I feel very blessed to have so many people willing to help.

I have a little extra time between treatments this time.  My doctor only sees patients on Thursdays, so instead of going for treatment on Monday and returning on Thursday, they set it up so that I will go in for my CT scan, see the doctor, then take my treatment all on Thursday.  It will be a long day, but that's so much better than having to go twice in one week. 

The CT scan will tell us how the spots on my liver are looking, and we'll discuss surgery then.  Honestly, the thought of another surgery is a little daunting, as I'm still having pain in the incision from the last one, but if that's my best option for making sure that everything is gone, that's what I'll do.  I feel fairly certain that the surgery won't be scheduled until after the next course of treatment (March 1st, 12th and 26th), but he may surprise me and go ahead and schedule it.  And who knows?  Miracles happen; the spots may be gone already!

Optimism is not my natural state; I am, after all, the daughter of a man who absolutely believed that "Murphy was an optimist."  But I feel very optimistic and even hopeful about this whole thing.  I truly believe that I'm going to be fine, and honestly, if bad moods and tingly hands are the worst I have to endure to get there, I'm in pretty good shape.  Some of the larger lessons that I'm taking away from this I think I probably could have learned in little less dramatic fashion, but apparently the universe believes that I needed to be whacked upside the head.

I can handle it.

Teach Your Children

After my initial consultation with Dr. Big Dog, I decided that I needed to sit down with Liam and explain to him what was going on.  He had had a really hard time with my extended hospital stay and I knew that there were days ahead where I would be away from him again.  So I bit the bullet and sat him down before I went back to Chapel Hill for my PET scan.

Telling your almost-eight-year-old son you have cancer is not something that is regularly covered in the parenting books; there is no What To Expect When You Expect Chemo.  Liam is a very bright child, and he is also a worrier.  So I knew that the way I framed this conversation was going to set the foundation for how he dealt with things in the months to come.  In many ways this was probably one of the most important conversations I'll ever have with him.  I didn't know what to say, I only knew that I had to be honest with him. 

So I just said it flat-out, "Mama has cancer."  Then we talked about what cancer is and how it affects your body, and the things that had already been done to kick the cancer's ass.  I explained to him about chemo, reminding him that his first-grade para-teacher had gone through chemo last year, and that she was still able to come to school and be his teacher.  I told him that my doctor was very, very smart and knew all kinds of things about how to treat cancer, and that my job for the next several months was to listen to what my doctor had to say and to follow his instructions so that I could get well.

He cried, of course.  He said, "I wish this had never happened!" about a million times-his mantra against bad, scary things (he repeated it endlessly in the ER the day he broke his arm).  I cried a little too, and we both agreed that this was very scary and sucky, but I assured him that I was going to do everything the doctors told me to do so that I would get strong and well again.   

I thought he was handling it well, until last week when I returned from Chemo No. 2.  Mama had come to meet his bus while I was in Chapel Hill, and she planned to stay with us for a few days until I felt ready to be here alone with Liam.  We are so fortunate that my mother is willing and able to come stay, but Liam was very resistant to her doing anything for him; he wanted me to do everything, even things he could do himself.  He loves her to pieces, but he was not very kind to her while she was here, which was my first clue.

Then came the call from his teacher, who said that all week he was coming in complaining of being tired, not wanting to participate in class, putting his head down on his desk.  She was finally able to get him to tell her that he was tired because he couldn't sleep at night, that he kept waking up because he was "worried about Mama."  Do I even have to tell you how my heart broke when I heard that?

I didn't want to jump right into it with him because I want him to continue to confide in his teacher, but he took the decision right out of my hands when he initiated the conversation and told me the same things he had told her.  He also told me that he likes Grandma to visit, but he doesn't want her taking care of him or me, that we can do it ourselves.  I explained to him that I was Grandma's baby just like he was my baby (even though neither of us is a baby), and that she wanted to take care of me so that I could get strong and take care of both of us again soon.  He agreed, but very grudgingly, to let Grandma help us when I needed it, but was very clear with me that he didn't like it.

He stayed home from school yesterday and really wanted to stay home today, too, and a little judicious digging uncovered the fact that "it's hard to be at school when I'm worried about you."  So we talked about how the best thing we can do right now is lead our lives as normally as possible.  I told him that this week I felt really good and strong (a bit of an exaggeration, but that's okay), and that I was going to spend the week doing what I need to do, and that I need him to do his job, which is to be a little boy who goes to school and learns cool stuff and plays with his friends.

Clearly this will be a continuing dialogue, not a one- or two-time conversation with him.  With so much of what will happen still unclear, it's hard for me to talk with him about it.  All I can do is listen to his fears, hold him close when he cries and be honest with him when he asks questions.  It doesn't seem like enough, but it's what we have now, and will have to suffice.