Wow! I knew this blog was being neglected but I didn’t think it was THIS bad. So much has happened since January…good, bad, indifferent.
I guess I should start with beginning treatment and stopping breastfeeding. Treatment started out fine as did stopping breastfeeding. The breastfeeding bit was harder for me then it was for Bubba. He loves milk and besides the need to have his hand down my shirt when having a bottle, he stopped attempting to breastfeed by the end of the first week. I still find it difficult sometimes to resist the urge to nurse, especially when he’s not feeling well.
In order to keep this short, here’s a quick run-down of how IV Infusion went:
IT SUCKED!
My hope is to never have to do that again. I spent 30+ days driving up to Boston every day, getting the infusion and then driving myself home to await horrid side effects. I was unable to do much of anything including being really “present” for my kids.
I finished IV Infusion in February and had to take a week’s break before I began doing injections at home. I now do treatment Monday, Wednesday and Friday every week by subcutaneous injection. Even though I hate needles, I have found giving myself the injections to be quite easy. I have had to go on one “hold” so far due to a major sinus infection that made it impossible for me to even walk a straight line…way too dizzy.
I started my injections, at a lower dose, again a couple of weeks ago and have just been told that my white blood cell counts are really low and if they don’t come up, I will have to go on yet another hold. Not too happy about that. It may also mean a further reduction or complete stoppage! There is no way I can stop treatment altogether. This is the one thing I can proactively do to help save my life and spare my children the loss of their mother! Stopping is not an option.
Needless to say, it has been a very tough week. I have lost 3.5 lbs. since Monday due to a sour stomach. My muscles are weak and sore and I feel as if I haven’t slept in 100 years. So hoping that next week will be much better!!
