Full disclosure

When I started my blog I wanted a place to keep track of my journey and share with those around me. At the time I had no idea how many times the treatment plan would change or that I would spend 5 days of the week at UW Hospital for a couple months of my life. 

Just thinking back to the initial phone call that confirmed I had cancer stirs up complex and impossible to articulate emotions.

I wasn't sure initially how much I wanted to share on this blog because I decided it was more important to me to share overall. I never anticipated that as many people would interested in what happens or that people would follow so closely.

I know that plenty of people "drop in" and read a post here or there, but I also know that there are many that read daily. This post will be my 59th post and by the time I am done writing I will have over 6600 pageviews. I'm humbled and amazed by this number.

Initially I talked a lot about the intimacy of this whole process, but as I realized how many people were reading I became self conscious. I wasn't sure what the right balance of disclosure vs. privacy was for me. I became embarrassed.

I'm still not sure where exactly that balance lies for me, though I can honestly say that I feel that I have strayed away from disclosure and played it safe lately. I want to share the whole process with all of you. The good, the bad and the ugly.

On that note, I'll level with you. The number one side effect of external radiation is diarrhea and even though I feel like I have minimal radiation side effects, I haven't had a day in weeks that I haven't had diarrhea. I hate taking pills, but I have resigned myself to the fact that until I am done I will survive on Imodium. I also have red irritated skin but in areas that none of you will ever see. In those same areas I have lost most of my hair and I'm tired of having at 5 bulls-eye stickers on my butt and sides to supplement my 3 permanent and unwanted tattoos.

I think I've been pretty verbal about chemo and since I'm done with that I'm not going to talk much about it. Just thinking about chemo makes me sick to my stomach and I'm not sure there will ever be enough time to make me not immediately think about how horrible chemo makes me feel. I dread the idea of ever needing more and as much as I don't want to think about it, I can't let it go until I have another PET/MRI and a decision on what happens next.

I have been asked by many people for updates on Ella and breastfeeding. Overall, she did great with weaning, but she still has days where it's apparent to us what she wants and we (and by this I really mean Geoff) have a much more difficult time getting her to sleep. I am still pumping and dumping multiple times daily, though I'll be honest, with feeling crummy and trying to keep up 2 little ones it is really hard to pump and dump with as much frequency as I think I should. As of finishing chemo yesterday I have 650 hours (i.e. about 27 days) before I can recommence breastfeeding. I also need to have my milk tested in a few days here and ideally again before I restart.

The hardest part of all of this is the financial effect on all of us. We are used to our two income household. We are both used to having great benefits. If I would not have changed jobs in May and I was still employed by UW Health I would have been covered by short term or long term disability. I had disability coverage at Watertown too, but I never made it to my required 90 day mark. This kills me. I would never have guessed that I would be diagnosed with cancer during that time. The thought never even crossed my mind when I weighed all the pros and cons of leaving my safe and secure job for a new adventure.

I had no idea what this would do to us. We have had some financial help from family and many of our friends have been kind enough to send checks to help us out, but it still isn't the same. We've been ok until now, but it is really starting to hit us. Today Geoff actually had to sell some stock so we would have enough money to survive for a couple more months. It was a serious blow to our pride. We are ashamed and embarrassed that we weren't financially prepared for something like this.

Personally I hate discussing my finances with anyone. It makes me feel vulnerable even on the best of terms. I know that it opens the door for judgement and that usually means people asking "well, why don't you get rid of (fill in the blank here...number one answer is usually your horse)." I feel like I have to justify my (our) decisions and that isn't fair to me, my family, or the person I'm talking with. That being said, I will respond to the horse comment. Aggie is part of our family. I don't go to movies or live a lavish life-style and under normal circumstances she is an expense that suits us just fine. She is irreplaceable and not disposable.

It's hard because everyone would handle these circumstances in their own way. I have applied for unemployment (another embarrassing secret of mine), but I am stuck in limbo while it is determined whether or not I qualify due to my "medical issues."

The hardest part for us is not knowing what's next and how much longer all of this is going to take. It's hard for us to plan when we are forced to live one day at a time. We are trying to minimize spending, but we also try to keep things as normal for our kids as possible. We have cut out things like Little Gym, but we have kept them both in swimming since they love it and it's only $100. for both of them through winter break. E's preschool is a lot less expensive than daycare, yet much more stimulating and he likes it better. Both kids still go to daycare once a week, but that was so we could have some consistency on chemo days (now internal radiation days). Ella goes an additional day because we had taken a flex plan to cover daycare and we decided that an additional day for me to rest would be a good idea. It's hard though because we are constantly are reevaluating and second guessing ourselves.

Cancer sucks! but so does all the rest of what cancer brings. We try so hard to minimize stress in our household because none of us have the energy to deal with it right now. At the same time, it is impossible task. There is so much stress that dealing with cancer has brought to our lives. Most of it, things we would never have expected.