drug woes and decisions

Seriously, just LOOK at this box filled with all of my drugs for the week! And the round orange one that is in there every other morning is the Prednisone steroid and I actually take three and a half of those, but they don't all fit in there so there's just the one to remind me to take all three and a half. Plus not pictured are the mouth wash which I use up to four times a day and Claritin, which I sometimes take for allergies and Tylenol and/or Motrin for muscle pain. I feel like such an old woman!

My mouth continues to be much better with the help of the wash, although I quickly got pretty sick of the taste of that stuff. I have to wait half an hour after using it to eat or drink anything, so the syrupy cherry taste stays in there a while and it's kind of annoying. Not really bad enough for me to be complaining about like this though.

Over the last week, the Prednisone has finally started to affect me. I am trying to find patterns but whenever I think I have it figured out, something changes. So there are days when I am seriously wound up and jittery and I feel like a drug addict. That is when I think to myself, "Wow, it would NOT be good if your mother were a drug addict." This often hits in the evening and is compounded by the energy and attention it takes to get three kids fed and ready for bed. I am not proud of how I've behaved a couple of times. Once Philip was trying to get my attention by saying, "Mommy, Mommy" over and over while I was trying to tell my mom what to feed Fiona. Finally I completely blew up at him and yelled, "PHILIP, WHAT!!!???" He was completely calm and said, "Could I please have some more strawberries?" I felt so terrible and gave him a big hug and apologized.

It is interesting how the kids' own personalities are different but sweet. Miles is my very thoughtful and sensitive child. If I am not patient with him, he feels it a lot more, whereas stuff like that often rolls off Philip's back. On almost every one of his numerous recent play dates, Miles has brought back an effusive card for me stating things like, "I love you. You are the best mom." He is very proud of his artistic creations. He is also in tune with how I am feeling and he wants to help me feel better. When he came back from his play date on the day I cut my hair, he walked in the door, glanced up and immediately said, "I like your haircut," and then went to his room. I knew he had been thinking to himself that he needed to be sure and comment on it right away because I would be nervous about how it looked. He wants to be a trooper so he doesn't usually complain about having to be farmed out so much, but my friends all tell me when they show up to pick him up at school he shows great disappointment and says, "I just want to go home with my mom." When I explained recently that in a few weeks we have a wonderful girl who will be home from college and will come nanny for us three days a week, he gave me a big hug and said, "Thank you so much for that, Mom. Because I mean, I like play dates but I am getting bored of them. I just want to be home with you."

His prayers are incredible. He really understands what prayer is meant to be. He just talks to God. For example, in his last bedtime prayer he said very fervently, "My mom is feeling worried because there are just a lot of things that are happening to her right now. I don't want her to feel worried. Please help her. I am glad that the medicine is going to make her all better. I love her a lot and she is so nice to be around." Then he mentioned a bunch of other things he was thankful for in his life and closed with, "Again, I am thankful for my mom and I hope she will not be too worried."

Philip, who has recently passed through the rather extended version of the Terrible 2's (He's been 3 since the first of the year and was still throwing lots of good tantrums), has made a conscious decision to have a cheerful attitude. At some point I must have told him how much I appreciate his good sense of humor and cheeriness, and he has grasped onto that as his way to contribute to the whole tricky situation. So every night when we put him to bed and explain, "Tomorrow morning you will go here....and then in the afternoon you will go there...." he puts a huge smile on his face and exclaims, "YES!!! I WANTED to go there!" He is just being totally thrilled and excited about everything and he gets a lot of praise for it, so he's decided it works. I love the wild look he gets in his eyes when he tells me which Superhero he is today and how much fun he's going to have. He continually smiles and asks how I am feeling and if the sickness has gone away yet.

This helps me be a little less worried about the kids, but the worry is still there. Those days when I am completely wired on the steroids are hard. I have the sleep aid Lorazipan to "bring me down" but the affects of that are somewhat unpredictable. Some nights I take it and still can't fall asleep until 3 in the morning. Other times it knocks me out within twenty minutes and leaves me completely doped up the whole next day, which I really hate. The steroids have to be taken religiously first thing every other day, but the Lorazipan I can play around with. I have halved pills and had then affect me greatly or not at all. Whole pills have done the same. So I am still trying to learn how to balance that because if I am too wired or too doped up I am not very affective as a mom and I feel a great deal of anxiety. There are also days when the balance must be great because I feel fantastic and have lots of energy. The nurse says maybe I should be taking some during the day in addition to night so that I am getting more sleep. I am resistant because the doped up days seem totally wasted to me.

Last week I had my blood drawn to test fertility levels, and so when Saturday came around I forgot to have the weekly draw to test for my white blood cell count. So I was all stressed out Sunday night knowing I would have to get to Monday's chemotherapy early to make sure there was enough time to do the blood draw and have it analyzed. My mom couldn't come so Tom's cousin was with me and thank heaven because now I got a a bunch of new stuff thrown at me and I'm glad she could help me listen and understand.

The results came back that I already have a low white blood cell count. This surprised me because I had felt so great over the weekend. It does make sense that I was so wiped out after the first week of chemo though. The doctor says it is common for this to happen sometime during treatment (but again--only two weeks in? Does my body have to be so darn responsive?) and it shows that they are giving me "enough." (I am thinking, there was a question that I might need more toxic chemicals pumped into me? Gad zooks!) So I couldn't have either of my chemotherapy treatments for this week.

There are two ramifications here that have resulted in stress and unhappiness for me. First off, this now means that every other week on the heavy chemotherapy treatments (the weekly infusions go in a light, heavy, light, heavy pattern) I will have to return for five consecutive days afterward for shots to boost my immune system. That means I'll be getting a shot on lots of weekends, including Easter and Mother's Day. I'm not a big fan of shots. And I can't get them at the Los Altos center close by; I have to drive all the way to Palo Alto. It is just kind of a big pain. So next week I will have chemotherapy Monday and Tuesday followed by shots Wednesday through Sunday. Then I get to go back again on Monday for the next chemo. 8 days in a row. I guess it depresses me because it makes me feel like I really must be awfully sick.

The even bigger stressor is that messes with my carefully planned calendar. I know, I know I have to get over the need for control, but cancer makes you feel like you are not in control and you really want to control the things that you can! So I set things up, particularly for my kids, based on heavy weeks and light weeks and now they are all flipped. But as I slowly go over the calendar it looks like there won't be too many things that have to get moved around, so I'm sure it will all work out.

On top of this, we heard from the fertility specialist and she said that my levels are really good. Still, after looking into it a little more she is suggesting that having the Lupron shot would probably be beneficial. It just happens that the day I would need the shot would be Monday, the already big chemotherapy day. I would continue the shots monthly for four months, so three out of four times it would be the same big chemo week and I'd be getting shots 6 days that week. Once again, Miles says it is just too dreadful.

I feel like it's important to do what I can to give us the best chances of being able to have more kids after all of this is over, but I also don't quite understand if there really is much benefit to the shot and I don't relish the idea of dealing with the possible symptoms. Many of the possible symptoms won't be distinguishable from what I'm dealing with already through chemo, but the main one of course is lots of hot flashes, since the Lupron is basically putting my body into menopause. It's one more thing that I'm not sure I want to deal with. But I feel selfish when I say that. The good thing is I could try it in April and if it is just awful I could decide not to do it after that. We are going to have a couple more discussions with the doctors to get a few things straight and then make a final decision before Monday.

It is crazy how this whole thing makes me feel too overwhelmed to make decisions. Luckily, I have AMAZING friends (I think I've mentioned that before....) so there is always someone willing to lend an ear while I talk through it. Hooray for that!