We didn’t really live in Virginia. It was more of a midway point. The kids had finished school in Georgia, my Dad was finishing up a school in Virginia, then we were moving to Germany. In the mean time our family occupied a pre-furnished house on base. The elapsed time escapes me. Maybe a few weeks? I spent my time between the library and the playground with my siblings. The first Sunday we were there my parents found our Girls’ Camp was coming up, and they promptly signed me up to hike 40ish miles on the Appalachian Trail with a bunch of strangers. It was the fourth year hike, something I missed out on with my church group in Georgia, and was excited to still get to participate in.
Of course… it’s important to know that I was nowhere near remotely prepared for a 40 mile hike on the Appalachian Trail. Because let’s be honest – no one expects that to just fall in their lap. I had my tennis shoes, and my Mom bought me some better clothes. We borrowed a pack and I was signed up to split a tent with someone I didn’t know. The first morning we met up with the group, I climbed into someone’s car, and waved goodbye to my parents.
I wish I had more details for you. The entire trip was kind of a wash. Yes, we hiked 40 miles. No, it was pretty miserable. It rained the whole time. The girl who was supposed to bring the poles for our tent forgot to pack them, so each of us was assigned to another tent. Three people in two people tents, in the rain, results in very wet girls. Hiking in tennis shoes results in very wet feet. I had never been… forced to commune with nature… in such natural ways before…. and I can honestly say I am a huge fan of indoor plumping. After a while my eyes got so used to bouncing up and down as we walked that stopping resulted in that weird dizzy feeling that also happens when you ski all day, then stop. A weird dizzy that makes your stomach a little queasy, while keeping you awake all night.
I remember the last day the best. It was pretty incredible. It wasn’t raining, but the trail was muddy and I can still see it, my sneakers just sliding down leaving those thick lines in the mud. I can’t imagine what we must’ve looked like when the adults finally picked up the gaggle of girls, but I know what came next. A hot shower, a gallon of chocolate milk, and some chocolate kisses. Every bone in my body was aching, every muscle twinged at the slightest movement, every item of clothing I owned was covered in mud as I sat in a camp shirt and someone else’s pajama pants. It is honestly the most relaxing moment I can think of.
I wish I had a picture to share, but just imagine a bunch of muddy, poncho-wrapped 15 year old girls and that’ll be accurate enough.
So much of this experience speaks to me right now. The weird queasy feeling that fills every moment of my day, the muscles have to be talked into every movement, the joints that want to keep going but don’t want to do anything all at the same time.
I honestly feel like I”m traipsing through mud every day. Or maybe knee-deep snow. Or knee-deep muddy snow? At some point it becomes impossible to describe and you’ll just have to trust me that it’s tiring.
My last blood results showed that I am slightly anemic. The nurse said it’s not low enough to warrant a blood transfusion, but it is kind of a double edged sword. My hemoglobin started out considerably higher than the average person – which means it was very healthy. So there are some people who walk around with the level I have now and they do fine, but for me it’s about 5 points low, which is a big difference. I’d still have to go down another four points before I’d need an infusion – and that’s not likely to happen.
This infusion was very hard for me – emotionally. I’ve checked out and when I’m not feeling like absolute sh*t I’m living in “I don’t have cancer (unless I see my reflection in the mirror) world”. It’s probably not the healthiest place to reside, mentally, but it keeps me going. So having to hand in my “I feel fine” card for needles and exhaustion was incredibly hard this week. Wednesday found me begging Brandan to just take me home, because I didn’t want to do it any more. The infusion went by, mostly uneventful. Towards the end my port started hurting. They took the tape off, which didn’t make that big of a difference, and I just waited out the last 30 minutes of the infusion.
I had full intentions of returning to “I don’t have cancer (unless I see my reflection in the mirror) world”, but Thursday and Friday felt like walking into a pile of bricks over and over again. One of Brandan’s older brothers and said brother’s family came to stay with us for the week – and it really was a God-send. A good distraction when I was feeling okay, and constant entertainment for Ginny. This whole thing has been a bit of a mess for her, trying to redefine how we function as a family when Mommy is doing a bad job at functioning. It was good for her to get to hang out with her cousins all week.
Aunt Jody kept the little ones well entertained with Easter festivities while I moped around like a zombie. Let it be noted that I spent most of the time in zombie mode. Exhausted, but too hopped up on steroids to sleep for extended periods of time. Sometimes I think “One day I will relish in sleeping for hours on end.”, but then I remind myself that one day I will know what it feels like to have energy unfettered by the exhaustion associated with nursing or chemo (which I have been dealing with back-to-back). One day. It’ll be nice to have that energy, and I am looking forward to it.
My last chemo infusion is in the books. It will be May 7. A Wednesday – you should expect snow. About 3 weeks after that infusion I will have another PET scan. It should be exactly like my last one, with No Evidence of Disease. Then I will get scans every 6 months for two years. I will relish and dread these scans, but I will likely spend a majority of the next two years in “I don’t have cancer (unless I see my reflection in the mirror) world“. With the early disappearance of my tumors I’m a lot less likely to have a recurrence. I’ve decided to accept this swing of luck, though it is hard for me to have a positive attitude. I’m trying. I’m thankful that (hopefully) our biggest challenge will be paying our deductible each year, and that I won’t be sitting in an infusion chair again any time soon after that last infusion. I’m thankful I’ll be getting this medi-port out in less than a month. That’s a beautiful thought!
My hair has started growing in again. Oh… and falling out again. My hair has always grown very quickly. It was quick to fall out in the beginning, and apparently is very excited to come back. I am definitely looking forward to let wind on my head. It’s a very weird feeling.
Ginny and a neighbor at our Easter Egg Hunt. She was so excited and kept asking when her neighbors were going to come over!
I feel tired. It’s kind of my new normal.
I’m sick of my bones hurting. There doesn’t seem much that touches the pain. It hurts to move around, it hurts worse to sit still.
I’m sleeping okay. The anemia seems to counter-act the steroids. Weird thing to be thankful for, but once I talk myself through the aches I’m able to sleep – no drugs required. That’s really nice.
Nausea is not my friend. I have been pretty dependent on the anti-nausea meds these last few days. Today has been busy, with the block party in our back yard, and I firmly believe that distraction is the best medicine. I think today was my “hump” day. I feel better today than I did yesterday, and hopefully tomorrow will just be a little bit better. That’s all I can really ask for.
I still flip through all of those signs that people posted on facebook for me, before my first infusion. Those happy messages still carry me through. So I wanted to provide a second, latent, message of appreciation for those sweet messages. I’m constantly reminded of the people who have knowingly and unknowingly pulled me up the hills and helped me along the way. Every message, “like”, and blog comment helps to fetter me along. I hope you all know that.