On the Road Again

oh hey! Its been awhile since I've posted anything. Sorry. We had a jam packed summer of soccer, baseball, swim lessons, parties, bbqs, bible study, day trips and road trips. When my family does a road trip, we drive...alot. I mean, that is the point of a road trip right? Typically we drive anywhere we go. My boys have never flown on an airplane. Its the cost, yes, but also the flexibility and the adventure of a road trip. Our boys LOVE the first three quarters of any road trip. I've made binders with wipe off pages of Road Trip Scavenger Hunts (road signs, car brands/makes/models, fast food or store signs, etc) for each boy and they love playing them. Healthy competition keeps their attention! We also have a DVD player in the mini van as well as many rounds of "20 Questions" or "What Movie am I?" This year, my husband drove about 25 hours and I drove about 6. He likes driving more than I do....and I wasn't with on the first leg of the trip. "Why weren't you with?" you ask....well, that is why I'm posting this blog post. While I am, by the grace of God, in full remission and have hit a major milestone at the 3 year post transplant mark, I am by no means "normal". Traveling, for me, takes a lot of planning and sometimes I just opt out.

This year, the plan was for the boys to spend a few days at Gramma's, Dan would go pick them up and drive them to his parent's cabin in the U.P. of Michigan, come home to pick me up then go on to our annual trip to Nashville, TN to visit family then return home. All in all, the  boys were gone for 18 days, Dan was gone for 15 and I was gone for only 7. Everyone had so much fun and while I did miss being with my guys for the cabin portion of the trip, I think I made the best choice by staying home.

My body still has side effects from the transplant that will remain with me. One of those is the fact that I cannot swim in fresh water bodies of water. This includes lakes, rivers, ponds, and basically anything that isn't a clean swimming pool or an ocean. I also cannot be in the sun for long periods of time as it will cause a skin reaction and also can trigger GVHD to flare up. These are strict instructions from my medical team and they remind me at the start of every summer that I must adhere to these guidelines or pay the price with GVHD and possible life threatening infection. Because of that, I opted out of the cabin trip this year because it involves alot of lake time, outdoor hikes and bike rides and sunny time at the dunes. In previous years, I've taken several books with me for this trip and spent most of my time indoors, reading by myself. I decided this year that I could use my time better being at home without interruptions and tackle some house projects and also spend some time with my mom and sister. Turned out to be a good decision and I enjoyed it a great deal! However, I will return to the cabin trip next year with my pile of books because my boys said they missed me. Perhaps it will be an every other year trip.

The Nashville portion of the trip was much more appropriate for  my limitations. While I did have to sit out the bike rides and the river exploration, I mostly kept up with everyone. I love bike riding but the humidity and heat in Nashville limits my physical activity. My sweat glands still don't work properly and I overheat pretty quick. Nobody wants to have to pick my big booty up from the sidewalk and drag my incoherent body to shade and dump cold water on me. So I stayed behind and caught up on some TV shows and reading.

My boys and husband can pack for a trip in a matter of minutes and fit it all into one duffel bag. Me? Not so much. I need time to plan out every situation. I count out my meds for the trip, pack three extra days worth in case we get stuck somewhere without a CVS close by, and often times have to appeal to my insurance company to let me refill early so I have enough for the trip. Then comes the lotions and potions. I need sunscreen every day (which you should be putting on too!!), estrogen cream, bioidentical cream, hydrocortisone cream, three types of eye drops, face cleanser for sensitive skin, lotion for sensitive skin, cream to hide the bags under my eyes, three different contact solutions, benedryl cream, nasal saline spray and a partridge in a pear tree! Thats just the stuff that I need because of side effects of transplant. I also take the usual make up, body wash, toothbrush and paste etc. Then I need the wide brimmed hat, two pairs of sunglasses, two wigs, head covering for sleeping, wig brush and comb, and the ever present water bottle. I drink more water than anyone I know because my mouth is so dry. In addition, I must always carry two important pieces of paper with me wherever I go: my current medication list and a letter from my transplant doctor with my medical history/diagnosis and my need for irradiated blood should I need a transfusion. Those papers could mean the difference between life and death.

Now, I have taken a couple flights with just my husband (no kids!) and on those trips, I must have several things: Clorox wipes, Antibiotic cream and saline spray. I use the clorox wipes to wipe down EVERYTHING near me in the plane especially the seat belt, tray, arm rests and buttons. I then put antibiotic cream on a q-tip and smear it inside my nostrils then often spray saline spray in my nose. This was recommendations from my doctor and I've done four flights and have not gotten sick. The other thing I do is aim the airflow from above to blow the air away from me.

Once I get all those vital things ready, then I can actually pack the normal stuff that everyone else packs. Why do I tell you this? Maybe you're reading this thinking "i am not alone, she also needs so much to travel with!" or "wow, I CAN travel, I thought it was too hard or not possible" or maybe you're reading this as a caregiver or spouse who thought your loved one was overreacting with all the stuff he or she needs to travel with.  I am a lucky one. I don't need much in the grand scheme of things. Some of you are on oxygen or need special garments or more medications or creams. I am blessed to be doing as well as I am. I hope you, reader, will get to enjoy road trips and travel too. It is doable, it just takes some planning and lots and lots of packing.