A Random Mess

My head.

This is one of those blog posts that will be disjointed and rambling.  Lots of thoughts in my head, compartmentalized, and now I’m trying to bring them back out and form them into something rationale.  Always a good time.

This week has been strange for me in that I’m caught between having to make a number of decisions and yet am having others taken away, and that has been less than easy to deal with, and more difficult than I expected – I surprised myself.

As I mentioned in my last blog post, I should not get pregnant / have a baby while on the drugs for my form of leukemia.  Interestingly it’s not that the drugs make one infertile so much as there isn’t enough information on the drugs to know whether or not they would harm a baby (in utero), and this isn’t a chance one would want to take.  This led to discussions about different options, etc., but at the end of the day, it meant one thing – (most likely) no more kids.

When I first communicated this, many people’s first reaction was to tell me to be grateful that I had children – and three lovely ones at that.  This hurt, because it’s not that I’m not grateful that I have three beautiful girls – I’m beyond grateful.  My love and thankfulness for them hurts; there are no words.  My first response to these statements were to be upset / angry – no one wants to be told they shouldn’t have more children, whether they already have children or not.  But, as I worked through so many emotions this week, I realized that really, it was that I had a choice taken from me – one of many, and earlier than I expected.  It really wouldn’t have mattered if it was about having more children or anything else, really – it was having freedom taken away, the freedom to make my own decision. 

Thankfully a really close family member and I were able to discuss this yesterday, and we had a good chuckle about the fact that age often acts as the robber in that it takes these freedoms eventually.  It’s just that I have cancer to contend with and it takes more freedoms earlier than age would.

This loss of freedom – loss of control – bled over into many other aspects of my life this week.  Suffice it to say, it was a difficult week.  I’m thankful that at least I finally understand why.

I’ve made the decision to apply for the drug trial. You can read more about it here: http://clinicaltrials.gov/ct2/show/NCT01650805?term=chronic+myeloid+leukemia&recr=Open&rank=10.  Mainly, if I am accepted into the trial, a coin will be flipped, I’ll be given either Imatinib or Ponatinib, and I’ll be monitored for quite some time to determine if / how they are affecting me.  There are positives to this trial in that I will have a drug to treat the CML no matter what, the drug is free for the time I’m on the trial, and there are fail safes built in to ensure that my health is the primary concern.

I’ll be returning to the doctor on Friday for the tests I need to apply for the trial; depending on the results, I could start the drugs within a few weeks.  So, I am also preparing myself for what that could mean.  Each of the drugs has a laundry list of potential side effects and the doctor suggested that I will certainly experience some.  Books and blogs I’ve read also suggest that any side effect could be severe right out of the gate but in time could be overcome.  So, mentally I’m preparing for that, work wise I’m considering what that could mean, and of course, with the family, ensuring that we have the help we need at home.  And then there’s the possibility that nothing could happen and everything will be fine – who knows!  More mumbled mess in my head.

Generally, though, I’m doing okay – I have my rough moments, but that doesn’t take away from the sweet kisses of my kids, the snuggles, the messes, the day-to-day… it’s all still here and we all have a life to live despite that which invades it.

erin