No end in sight yet

My most recent CT scan showed what I had feared, more changes in the sarcoid and a bacterial infection. I knew I had bronchitis, but had hoped it would resolve itself. Unfortunately, as the pulmonologist explained, the sarcoid traps the bacteria in the lungs so I can't get better without drugs, and normal antibiotics don't work.

So two things. First, I have to take these uber-strong antibiotics for 2 weeks to get the infection (we hope!). Second, I'm stuck on the steroids for longer because we can't start the new treatment if I have any infection at all in my body because the new drugs will severely shift my immune system and I could get very very ill and they won't event start to taper the steroids until I'm on the new treatment for at least 6 weeks.

I get so upset dealing with all of these delays and backsliding. I have to constantly remind myself that sarcoid is a chronic disease and, at least for me, it is not going to be a straight shot from illness to getting better. It has been and seems like it will continue to be fits and starts with some improvements but also lots of disappointments.

My husband and I had to have a frank talk about our vacation this year. For the past two years, largely because of the cancer and the sarcoid, we've done very low-key vacations, renting a house and spending the week basically resting as a family. This year, by husband and girls really wanted to do something big. As much as I'd love to go somewhere far away or exciting, I'm afraid. I worry that I'll have trouble with the new treatment, that I'll be too tired or sick to really participate, or that we'll go on a plane and I'll get really sick because my immune system will be so messed up. So, we've decided to stay close for one more year and that next year, when I'm in full remission, we'll go someplace really fun (hope, hope!).

I hate putting my life on hold, and the change to a close-by vacation isn't the end of the world in any sense, but if I've learned anything over the past couple of years, it's that you have to live your life the best you can with the hand you've got and enjoy the small things, because it can all change in a heartbeat.