Monday, March 26, 2012

When your news feed is bald

Every once in a while, I open up my computer, go to my Facebook home page, and wonder how it came to be that my entire news feed is filled with cute little bald heads. 

It's funny. You don't think often enough about how when you become a cancer mom, you are exposed to mostly other cancer parents, making your friend list full of little bald heads - parents showing off their fighters, angels, warriors, survivors. We are so proud of our little ones, and how much they achieve each day. And if they pass, all we want to do is see their face, so we can remember how happy they made us. And when they are finally cancer free, we want to show off how strong they are. Our world revolves around them more than we know. 

Sure, my friends who have kids without cancer still use pictures of them as profile photos, and are proud to be parents and proud of their kid's achievements. But, there is something about how little faces below bald heads know so much more about life than their fuzzy topped counterparts. I think it's in their eyes. It's a level of happiness and appreciation and pure joy that I find doesn't show up in the eyes of other kids. Somehow they know that they are special; that they are lucky to have that moment. Sometimes I wonder how they can know so much while being so little. But I guess cancer just teaches different lessons. 

Thursday, March 15, 2012

Chemo Cures Psoriasis

Another "great" thing about chemo? It "cures" psoriasis! I have psoriasis on my scalp, which I have had forever. It makes it SUPER itchy, and the skin is crusty in the winter. Why do I have it you ask? Psoriasis is a result of an overactive immune system (ha, go figure), and since chemo is an immune depressant (killer really), psoriasis goes away! It was great to not have an itchy scalp for a while. Sadly, now that my immune system is "working" again, its back. Short hair makes it easier to itch, but I can't keep a pencil in my pony tail to scratch with anymore. That was the best tool (mechanical, not regular - I wasn't drawing pictures in there). My new shampoo helps (Dr. Bronners), but alas, itchy I will be. I'd rather have an itchy scalp and an active immune system than the alternative though. It's the little things... :)

Wednesday, March 14, 2012

Weight loss plan

I have never been a small person, and in reality, I've never had much of a problem with it. After college I had gained more weight than was probably good for me, but I was sure that I would be able to focus on loosing it, once I realized that I had gained it all. For a while I was doing pretty well. After I got married in 2008, I lost about 20 lbs before I got pregnant, a year and a half later. I gained a very reasonable 25 lbs while pregnant, and then figured I'd have to work at loosing it once she was born. 
To my surprise, by two weeks post baby, I was back to my pre-pregnancy weight. At six weeks post-baby, I was 10 lbs lighter. I was excited - I thought "wow, best weight loss plan ever - have a baby, nurse that baby, and give up dairy because she's sensitive to it. Easy as pie!" 
By the time Thanksgiving rolled around, none of my clothes fit. I finally had to steal some of my sister's pants so that I wouldn't keep having to pull mine up and wear belts all the time (I hate belts). I hadn't been that small - ever. For a little while, I was sure that nursing was a magic fat burner. 
Then the bubble broke. I started in on my tests and my biopsy, and all the doctors kept asking me if I had been loosing weight. I felt like my weight loss was justified, between the nursing, the cutting out of dairy, and the dancing I had been doing, I was sure I was loosing it on my own merit. But when I was finally diagnosed, I realized that it was the cancer that was causing my rapid weight loss. From the day Saoirse was born, to the day I was diagnosed (7 and a half months later) I had lost over 55 lbs. I was feeling good, but I knew that my inside wasn't. 
Once I started chemo, I started to gain some weight back. It was a sign that the chemo was working. I gained about 10 lbs back, and stabilized. I was happy. I knew that my treatment was working, and I was glad that I didn't snowball back up super fast. 
Sadly, when Saoirse was diagnosed, stress, hospital food, and exhaustion undid all the wonderful wight loss that cancer had done for me. As she got sicker, I overlooked myself more and more. Everything was about her. When she died, all bets were off. Grief, stress, lethargy, and rich comfort food, all led down a terrible path. I felt horrible. 
When I was lighter, I felt better. Not so much emotionally or confidence wise, but physically. I've always had knee and ankle issues, and my knees felt great. My hips seemed to not stick so much, and I felt like my posture was better. I am determined to feel like that again. Our new healthy diet will help with that a lot (I know I have already dropped at least some wight, as there are some pants that I can now button). I have started my dancing again, and I think I'm going to make more of an effort to walk the dog down to the park. The goal? Feel better! Maybe I'll even photograph my project. I should start now. 
So what's the moral of this story? I'm not sure. But what we have learned is that Cancer is may be great for weight loss if you have it, but it's a real deal breaker if someone else you love has it. Think I could turn that into a fable? 

Thursday, March 8, 2012

Port out!

Got my port out today! It was hard to do, but it was also great. The nurse said it was my "graduation." I guess in a way it is. Maybe I should have gone out to dinner and had a big dessert to celebrate. 



I'll post a non bandage photo once it can come off. So far its strange to not have the tube in my neck. I didn't realize how much I used to play with it when I was distracted. The things you discover...

Wednesday, March 7, 2012

When You're Curious.... Like Curious George!

This is where I am right now; sitting in bed with Curious George, eating carrots in my new favorite bowl (bought at a thrift store for $2). I ended up here after having a total and complete melt down over some over spicy cream of broccoli soup. Yup. Soup. I guess it was inevitable that I would end up here. Somehow the day just wasn't going quite right, and there were a few times I almost went over the edge. The day was doomed no matter what, so I guess its good I got it out at some point, albeit over what was supposed to be dinner. 
Today started ok. We had to go to the Jimmy Fund to get Saoirse's genetic and autopsy results. We were dreading the trip. It's hard to even drive down the road (and I wasn't the one driving). We got there and met with Judy (our social worker), Esther (Dr. Obeng) and Susie (Dr. Shusterman). Good news #1: Saoirse had no genetic predisposition to NB! This was the biggest stressor for us. With the way our family history was coming together and drawing up, we were very concerned that she inherited some genetic mutations from us that made her more susceptible to NB. This is not the case. The best part of this news is that it means that we don't have to worry (as much) about our future kids having a higher chance of getting NB. Good news #2: We knew that Saoirse's tumor was very aggressive, and in the end had presented in ways not common to the disease. When we asked for the autopsy to be done, we expressed that we wanted her to help other kids by letting doctors learn from her cells and her disease, so that hopefully they can find a way to save these kids. We found out today that blood samples from her carrying her tumor cells were sent to a researcher in Texas who is compiling and saving (growing and freezing) NB cell lines for further study and future testing. Her cells will be used to test new and future drugs to see if they can be a good fit for kids with resistant and aggressive disease! She is already helping to save more kids! We are very proud of this. We did the autopsy so she could help them learn from her disease, and help to further the research needed to save more kids and find a cure for this killer. We feel like she has a huge chance of doing that now. 
The final thing we found out from the doctors is that the reason for her labored breathing and horrible reaction to the intubation was that NB had taken over her lungs. Like her liver, there were no large masses of solid tumor, rather the NB cells had taken over the lung cells and dispersed throughout. Her doctors were shocked, and both got to get a good look at her lung tissue under the microscope (we allowed the morgue to keep her organs for further study). They have learned so much from her, and hopefully they can use it to help more kids down the line. Somehow this brings closure to the way she died. We were so concerned that it had been a mistake that had lead to her lungs no longer functioning, but we now know this was not the case. Her lungs were too heavy with tumor to work. No amount of pressure from a pump was going to keep them delivering oxygen to her body. They just weren't working. Her liver was weighed and rather than the expected 300 grams or so, it was over 1600g. That's how much tumor was there. I feel horrible for the amount of pain that she must have been in. She knew she couldn't do it anymore. She just wanted to rest. "All done" she said, "sleep." Sometimes I wish we had just taken her off all the machines and let her go on her own. But we wouldn't have won either way. Either way we would have regretted as much as the other. I just wish I had held her hand when she went. 
I'm getting my port out tomorrow. As I was sitting her sobbing I told Mike I didn't want to go. It's not that I don't want this stupid thing out of my chest. I guess I don't want to be better. It's not fair that I get to be better and she didn't get that. She never got to have her line taken out. She never got to have a super fun splashy bath. She never got to have an "All Done" party. She only got one Christmas, one birthday. She didn't get to tell her story in a college essay to help her get a scholarship. She didn't get to make her own friends, pick out her own clothes, make her own lunch, walk the dog by herself. She'll never be able to stick up for her siblings, or tell them how to be cool. I hate that they will never get to know her. I wish that she could have had the simple disease, that she could have been the one who was easy peasy, and done after 6 months. I would have taken all her pain. All her struggling. All her suffering. I would have been miserable for her for as long as needed. I am her mother. And she is my baby. 
I am more determined than ever to put up a fight for the real cure for NB - finding what in the environment is helping it grow. I am determined to work on the other side of treating cancer. Food, water, exposures, stresses - I have to spend some time and effort on bringing awareness to the things that are causing this horrible disease. Funding needs to be given to that work, and those ideas too. If we could find how keep NB from growing in the first place, and help the body fight it off on its own, like its supposed to, we could keep these kids from both the horrors of the disease and the horrors of treatment. These kids could get their childhood back. That has to be the goal. Why can't I be the one to get us there?