That’s one of my big goals. I would prefer to be that way than feel slightly (sometimes more) crazy all of the time.
I’ve been home just short of 2 months now! Amazing how the weeks fly by. I’m so thankful to be in remission, to be home and to provide a little stability for our family. In a lot of ways I feel good – very little nausea/vomiting, very few headaches, a little increase in energy, I’m able to do a little bit around the house or with the kids as long as I can rest pretty often.
One of my challenges is feeling like a jittery mess. I have near-constant tremors (which makes my eye makeup interesting at times). The tremors are almost like an outward sign of the jitteriness I feel inside. My medication that prevents graft-versus-host disease causes me to shake, and this will continue probably 1-4 more months. The constant movement seems to also make gaining weight very hard. You’d think weight loss would be awesome, but not when it takes your muscle, makes you look frail and ages your skin. Stamina is also something that Jonathan and I struggle with. 2 years of doctors’ appointments, treatments and emotional roller coasters has really done a number on our patience and my ability to not just stare off in the distance. 🙂 I’m sure you can imagine the impact.
Yes, I’m complaining. Then I have to remember that I’m one on the survivors that has been in remission 2 times – not everyone gets that opportunity. If this disease stays away, I can actually be deemed cured in 2 1/2 years. So, every day we have to choose not to be anxious and choose to trust God. Which can be really hard! Prayer and reading the Bible really help with that.
Since being home, we’ve tried to make the most with our family. I have a lot of limitations with germs, even lawn clippings, dust/vacuum dust in the air etc. We’ve celebrated our 11-year-old’s and 5-year old’s birthdays a couple of weeks ago, gotten our girls ready for middle school, we replaced my 12-year-old SUV, and took an extended “test drive” with the new car to Colorado. We are trying to be a little more spontaneous and seize the day (as my wonderful counselor highly suggests). Yes, it was tiring – and no, I couldn’t hike or enjoy horseback riding, BUT I did enjoy the very best massage I’ve ever had compliments of one of our first Colorado friends we met when we lived there – she did a lot to make our ranch/resort stay special.
I’ve been seeing doctors here for follow-ups. I’ve been very impressed by the stem cell transplant team at Vanderbilt. They have managed my many medications, monitored my labs, scheduled breathing treatments, examined my eyes – we have to monitor graft-versus-host disease carefully (my donor cells attacking any part of my body).
Late September, Jonathan and I will return to Houston for my 6-month-post- transplant check-up. I have a few doctors’ appointments, scans and outpatient eye surgery to help me with my radiation-scarred tear ducts, so that tears don’t continuously roll down my cheek – Pyrex tubes are the answer – amazing!
I’m sure there’s much more. So much of it is hard to put into words. Please continue to pray for us. We need to release the worry and hand it over to God, embrace each day and be thankful for our many many blessings.