May .... and chock full of milestones

Hello all -
Yes, it has been a long time since I blogged last. Since the news of being disease free at the beginning of April, we began the taper of my immune supressants. We drop 25 mg every other week. It's a moderate pace (so they say) due to my past history of relapses. I still need to be aware of any signs of GVHD; nausea and/or vomiting, diahrea, skin rashing (these are the bigger ones). I have remained very fortunate and have only experienced mild redness in my face and hands, as well as dry and often red eyes. My weekly liver and kidney tests remain "rock solid". My sensitivity to the sun and ability to burn is my biggest challenge with the change of weather. 15 min. in the sun is equal to two hours for anyone else. Thus, LOTS of sunscreen and hats.

I did have two little shake ups that challenged my emotional strength. One was an easier one to deal with, a recent virus that caused a low grade fever, enough however that we needed to call down to DHMH on a Fri. night and wait to hear if I needed to get checked in. Luckily, no, it ran it's course and I just felt crummy for a few days. On the good side, I could fight off a virus in a few days.
The other rocked me for the weekend. It was when I asked Dr. Meehan a few weeks ago about planting a flower pot or two if I had gloves on (I knew that gardening and raking, mowing were all off limits due to the fungus in these). But, he, clarifing the severity of fungus to me, "if you catch a fungi infection, it's fatal" really challenged me. Simultaneously, EVERY tree was in full bloom, EVERY neighbor was cutting their grass, and our backyard was made up of six huge mounds of dirt as Troy has been building a stone walkway and patio. Was survivorship really going to be more just trying to survive? I was becoming fearful of EVERYTHING! And being afraid is not healthy. Long and short of it, I asked ALOT of questions to clarify and not assume a thing .... things that were second nature to anyone else. Because as I always tell my drs., I'll do anything and follow every direction and precaution, but if I don't know ..... so, as always, others powered through to support us. My folks put in hours of yard work with Troy to get us back in shape, and my buddy Jen happily volunteered to pot my flowers. And, there's always a mask in my pocket .... just in case.

Mothers Day was amazing ..... we did nothing! BUT ..... I was here this year! And I appreciated and thought about that every second of it!
And this past Sunday was the Burlington marathon. My dad and sister Jen ran as a two man team, each running 13.1 miles, as well as my sister Becky running 13.1 as the second half of my friend Amy's team. I'd hoped to maybe run a TINY bit with my dad, but wasn't sure, the course officials were pretty adamant about no bib, no running. But as soon as all three took off their fleece and had on matching yellow shirts that said Peak for Pam, bib or no bib, I was running. Jen and I met Beck and Dad and ran the last mile in with them .... along the waterfront, HUGE cheers and screaming "Go Pam!", and tears running down all of our faces. Two years ago, we all started this marathon journey, and Sunday, we got to all run across the finish line, hand in hand. It had a significance greater than I realized until I was in the moment.

So ... with that, I'm bustling around with field trips between the three boys, making an effort NOT to miss one. I'm shuttling boys, Paradees and honorary Paradees, between baseball, soccer, cub scouts, music practices, birthday parties, and play dates from the second they're out of school till I tuck them in I think nine days a week. And, I"M LOVING IT!!!! Troy tells me to slow down .... but I reassure him I'm fine. I do it because I CAN!

Love to all -
Pam