Dirty Little Secrets

As I go into a do or die weekend where I have two papers to write by Monday so I don't fail out of school, I realized I have had a tentative blog post floating through my head for days. It isn't an easy one to write, so I've been procrastinating on it (hmmm, seems to be a theme with me...). I'm not even sure where to begin or how it is going to shape up. I just know it's time for me to share. Some of what I'm about to share is interesting, some of it may be tmi, some of it may seem obvious to everyone, but me, but I feel this post is important for sharing part of my experience.

Today I met with our new advocate from the Center for Patient Partnerships (refer to the Resources post for more information). She is actually the third advocate we have had, but the first one I have met in person and the first one I have ever felt a connection to. She gets me. She understands our needs and wants to help. I'm excited.

I met with her after labs, before chemo. We talked for about an hour and a half and yet it still seemed like we didn't cover everything. We talked about disability, we talked about wills, we talked about counseling, we talked about caregiver strain and support for Geoff, we talked about sleep, we talked about the kids, we talked about Gilda's Club, and so much more. For me it was a really good experience. I walked away feeling like I don't have to take care of everything anymore. Geoff wasn't with us because today he needed to be at work (this is only the 2nd time he has missed chemo EVER), though he did come in to meet our advocate.

We spent a lot of time talking about how worried I am about Geoff. He is exhausted. I think others see he is tired, but they don't understand his life. How could they? Everyone always focuses on how good I look or seem to be doing and they don't realize how hard this is on Geoff. In fact, this week at Gilda's my wellness group was actually talking about how sometimes (a lot of times) cancer is harder for the support person than it is for the person with cancer. I think this is definitely true for Geoff.

There are so many things he does during the day to make my day easier. It starts with getting up. He gets up 15-20 minutes before me on a good day so he can give me nausea and pain meds and I can snooze while they start to take effect. Then we both do a few chores and gets the kids ready for school/daycare together. If it's a bad day almost all of it gets dumped on Geoff until those meds really kick in or I pull myself together. This continues all throughout the day.

Currently its 11pm and Geoff is out getting apple juice because he teaches in the morning and we were low. The kids will freak out if they don't get their juice, but the real deciding factor was me. I want apple juice, kale, and parsley juiced before bed so even though he is completely exhausted, off he went. Trust me I'm not proud of this, and I very much appreciate it. I don't know what I would do without him, literally. (update: and he came home with flowers)

Another example of how wonderful he is was Wednesday night. Wednesdays are supposed to be my relaxing day, but as it turned out I had a few home visits to do for clinicals. I was gone most of the afternoon and evening and I was having problems with my cell phone. I stopped at the Verizon store to fix the phone and didn't get home until nearly 8 pm. Before I got home I got called out for a birth so I had enough time to stop at home and change into scrubs, kiss the kiddos and Geoff, and run off again.

Halloween is my favorite holiday and I was crushed because I didn't have a chance to carve pumpkins with the kids (things like this are especially difficult when you are told you might not have another Halloween). I hadn't gotten decorations up like I usually do and then pumpkins...it was enough to make me cry, but never fear, Geoff saved the day! I came home and all the pumpkins were gutted and ready to go, so I took a couple of minutes and carved one pumpkin. While I got changed Geoff carved another to E's request and all was well.

Again, I don't know what I would do without him.

So back to the advocate. We talked a lot about Geoff. We talked about how he doesn't get free time or downtime because he never knows how I'm going to feel. We talked about how tired he is. I learned about caregiver strain in nursing school and Geoff is the perfect picture of it in my eyes, but no one else seems to see it because they don't see him needing to "take care" of me. It gives me all new respect for those people who truly have to care for a loved one.

Our advocate called me out on dirty little secret #1: "I secretly pride myself on being a good actress." No one wants to hear they look like crap. Occasionally I get the "you look tired" or "you are pale," but mostly I hear "wow, you look good." It used to be frustrating when I still had long hair because people assumed I was fine, or my treatments were easy and I wanted some credit for all the crap I was going through (radiation, chemo, internal radiation, surgery...seriously each of these on their own was crap!!!). At the same time, I do everything I can to try to portray that my hair cut is just me being funky. It's not that I mind people knowing...if I did I would wear a wig and I wouldn't have this blog. At the same time it's almost a challenge or a game to me. I can know I feel like crap and Geoff can know it's a horrible day, but I don't want that to show to everyone else.

Dirty little secret #2...What is a bad day? Well, funny you should ask. First of all my feet don't work. I know that's an odd statement, but one of the chemo's I am on currently gives me neuropathy which essentially means that my feet feel like they are asleep most of the time. They are numb and tingly and generally frustrating. I never realized how much this would affect my balance, but it does. I fell in the garage on Monday and turned my ankle and that hasn't helped matters. In addition to my feet, my other chemo gives me bloody noses...daily. I wake up and almost always get a bloody nose at some point. They are quick to resolve and no big deal, but they are annoying none the less. I just want to blow my nose like a normal person, is that so much to ask?...Because of these bloody noses I seem to have more snot and need to blow my nose more so if I'm around others I get really self-conscious about the whole ordeal.

Next up for symptoms are fatigue and bone pain. Fatigue is constant and I'm used to it. Usually I can kind of pace myself, but not always. Births in the middle of the night or that last for long times are particularly difficult for me right now. This is frustrating to me because I am just a lowly student and I fear I'm giving off the "I don't take this seriously enough" vibe to my preceptors and clients. It's a hard position to be in, but hopefully the fact that I recognize it and try to be proactive about it helps. Bone pain is a whole different issue. Bone pain is one of those things that sneaks in slowly and you don't know it's there until you are ready to start writhing. In fact, usually I know it's there because I can tell that I'm really crabby and have a short fuse. Then I stop and think, why am I being such a b*$%h and it's like "oh ya, you haven't taken any pain meds since you got up." When I started this chemo I was really good about scheduling pain meds every 4-6 hours while I was awake around my chemo schedule, but I'm stubborn and I hate to take meds, so I keep finding that I'm forgetting to take my meds.

Ok, this next one is where it begins to get graphic...diarrhea. I'm not talking about any sort of run of the mill diarrhea either. This is the kind of diarrhea that fools you into thinking you have gas and then you shart. I'm no idiot and not willing to chance it anymore, so I do take anti-diarrhea medication on a schedule depending on the day of the week. I can honestly say I had worse diarrhea when I was on radiation and I feared I would never be able to leave the house again, so I'm appreciative that this is better, but I won't lie, this does leave me second guessing whether I want to leave the house many days. This is the symptom that when people ask me about my symptoms I say nonchalantly "oh ya, chemo gives me some GI upset, " when what I really mean is chemo f'n blows up my stomach and makes me think I am going to die. Some days I take anti-nausea meds around the clock (note that I said the plural form of meds), in addition to anti-diarrheals, and anti-gas meds. There are days when it is so bad that I have gas that would kill you, burps that would kill you, and I'm running for the toilet frequently, but when faced with the idea of it is this or you die, you suddenly find that this is worth it.

Dirty little secret #3...breast milk. Many of you know that I was diagnosed just before Ella's first birthday. The single most painful thing I had to do was give up breastfeeding for chemo. I refused to stop right up until the morning of my first dose. Then I pumped around the clock for another 4-6 months with the hope that I would be able to resume breastfeeding. I had my milk tested and I tried to resume breast-feeding but Ella had too many mixed signals by that point and didn't understand. This topic alone consumed me my whole first round of chemo. I gave up something I believe strongly in and an intimacy that I really treasured with my daughter. Well, tonight I found a stash of pre-chemo breastmilk. I want to sneak it into Ella's milk and know that I'm still giving her some antibodies, but (I know people are going to judge this and/or be grossed out by this but remember you have no idea what you would do to live) I've read about people who actually pay for breast-milk to drink during chemo. They feel the antibodies are helpful and that it helps the immune system for those that are immune-suppresed. On that note, I've decided to thaw some of the breast milk for myself. I've read that I should ideally be drinking the milk of at least 3 mothers, but I figure this is a start, why not?

Dirty little secret #4...I've learned to love cancer. I did NOT say I've learned to love having cancer!!! but I have learned to appreciate it. It really has made me a better person, a better friend, a better wife, a better mom, etc. This doesn't always come across right now because I'm tired and pushed to my threshold, but I know it's there. I've talked with the cancer and thanked it and told it how much I appreciate all the gifts it has given me, but that I'm ready to be done now. I'm ready to take it from here. I know I am loved. I am overwhelmed by the amount of people that have helped us and my faith in humanity is restored. I literally take time to stop and smell the roses and my priorities have changed. Sure I may have learned these things without cancer, but cancer expedited it, and has helped me feel a sense of enlightenment. Thank you cancer for that. I love you and I appreciate you. Now please go away.