Apologies for missing my post last week. It was a busy week with lots of appointments and follow-ups. Unfortunately, I had a nasty reaction on my face to sunscreen and believe it or not the yellow “duck” mask they force us to wear out in public. My Doctor and his team really wanted to rule out Graft vs Host disease before we treated the rash. (which meant live with a scary “chemical peel” like rash on my face for a few days) I then started itching all over and started to well…PANIC. Good news, no signs of GVHD, seems I have some serious sensitivities to laundry detergent as well as sunscreen. Just means I literally have to stay inside between the hours of 10-6. The UV average daily in Florida is extremely high, so needless to say I should start aging backwards shortly. 🙂 The better news is, I usually walk at night, so my exercise routine will continue!
Good news to brighten my days this week I was lucky enough to see four of my favorite people. My friend Sarah came all the way down from NYC. Her Mother, Joy, was so kind to drive her down from Jacksonville where she had spent the weekend with her family, treated us both to dinner and then let us have our much needed catch-up session. Sarah helped me have a staycation at the local Courtyard and it was exactly what I needed to push me forward. With day 100 rapidly approaching, I need to get more comfortable with being outside the house, around people other than my immediate family, even if it means wearing a mask. (not the duckbill mask, ha) Next came an old friend fro NYC, my dear Wendi. Wendi was my work mentor and older sister at the Jones Jeanswear Group. I had not seen her in almost 3 years. Her and her awesome husband were vacationing down here and took a day to come see me. It was as if no time passed at all. I am truly blessed. ❤
Other updates, we are on our last 5 nights at the Hope Lodge. It has been a wonderful experience sharing this special place with other people who have recently gone through a Bone Marrow Transplant as well. The people we have met will be part of our lives forever, especially the ones who have been here the longest. They are like family. Tony is already getting nostalgic and he has really enjoyed his time here at the Hope Lodge and getting to know the other patients and caretakers from all walks of life.
Next week after a Bone Density Scan, Bone Marrow Day 90 biopsy, a Pulmonary Function Test, and my first of many vaccines, (I have to have all my baby shots again, eek), I will return to my parent’s home in Bonita Springs at day +91. I will anxiously await day 100, when my sister-in-law and a few other special visitors will come to town to celebrate such an amazing milestone. (by celebrate I mean simply just being all together setting our intentions for the future) This is the first of many milestones on this journey as an outpatient back living in the “real world.” I am looking forward to continue to “look forward,” and keep hitting the milestones and slowly easing back into life as we know it.
Thank you ALL for the Love and Support.
The Best is Yet to Come.