Our Route - Carver

I wrote this one and the last entry in the car as we were going to Amarillo. My Mom pointed out that since I have been doing lots of planning for the route around the U.S, I should write one about our route. I finished writing the last entry about 20 minutes before I wrote this. By the way it was hard to write this in past tense when it was about what I was currently experiencing. We just left Athens, TX. This is the current route though it might change some.

In Aztec, NM we will arrive Sunday, the twenty-third. We will leave on either Wednesday or Thursday and arrive Thursday night in Golden, CO. We leave Monday morning and go to West Des Moines, Iowa. We will stay there until Saturday and arrive in Minneapolis that same day. We leave Minneapolis on Monday and go to La Crosse, WI. We will leave Wednesday morning to go to Appleton, WI. We will go to Midland, MI from Appleton on Friday. We will leave Sunday morning and arrive in Atlanta on Monday. We will get to Pensacola on Wednesday and get to Orlando on Friday. From Orlando we will go to Boynton Beach, FL on Tuesday where we will fly out on Sunday, the twenty-seventh.

Exploration in Texas - Syarra

Although I am sad to leave my childhood home, I am excited for the adventure ahead.
Currently in the nine days since we left home, we have seen family and had fun in Fredericksburg, Dallas, and Athens, TX.
In Fredericksburg, we explored town, tried new foods like German style pancakes, and we had fun.
In Dallas, we went to a science museum with six floors. We only had time for three. One floor was about birds, one was like a biology lesson, and the other had exhibits on evolution and universe.
In Athens, we went to a fish center. Here, we fed the fish and then went fishing. I never caught a fish, but I had fun trying.
We are on our way to Aztec, NM now.

My Once-Green Room - Carver

I still remember how sad I was when we left. I wish we weren't going on this trip. I liked the house and I didn't want to leave. I remember when my Dad closed that one door and when he did, we couldn't get in ever again.

And I liked my room. My once-green room. I was sad when it was painted. And I was sadder when I had to leave it. It was maybe my favorite thing. Maybe it wasn't but it was something I really liked.

I don't know how I will handle leaving a house every 2 months. I might not get attached to the houses in the same way.

On the road - Carver

We are now on the road and I find it hard to have no house. In about a month, we will be living in Cape Town. But for now it is challenging. The last days of driving were hard days. We left later than we had intended and arrived in Salem, Virginia late that night. The next day was a hard day and we got to Little Rock. Then we got to Harper, Texas at about 11:00 that night. We went to Austin yesterday and went to a botanical garden and then a natural pool. The pool was incredibly slippery but it was fun, however the water was 68 degrees. We are still planning the trip around the U.S.

Final Week at Home - Alrica

For months, I have thought a lot about how to travel slowly and live slowly but the past week or so has been more of a sprint. With a revised close date on the house of Aug. 14, 2015 and hopefully final doctor’s appointments on the 11th and 12th, we had this theory that we would leave Lancaster after the Aug. 12 doctor’s appointment. That meant completely emptying and cleaning the house. My sister came up to help us for a few days with a final garage sale and to sort and organize everything that was left.

Furniture and big things were mostly sold on Craigslist or at consignment shops but a lot was given away. I hate to throw away perfectly good things so we put a lot of thought into who could use our stuff. Lots of food went to the LCCC Food Pantry, unused toiletries and random things went to Clare House – a shelter for homeless families, craft items to Lancaster ReUse, Building Supplies to Habitat for Humanity ReStore, and then there were the 18 trips to Goodwill! We also rented a 4’x6’ storage space to keep things with sentimental value or high worth, low footprint.

With my inability to drive, and our annual inspection date creeping closer, we had made the decision to sell our older car and clear space in the garage. While we knew that there would be a million things to do, we hadn’t quite realized how long all of those million things would take when most of the burden would fall on Erich. He had to do any heavy lifting, driving, climbing of stairs, and still help handle my daily needs as getting in and out of bed even still requires assistance.

When not actively working, there was also the business side of things that I could do. Things like scheduling utility shut off, change of address forms, research into trip plans . . . all leading up to the doctor’s appointments that would decide our immediate plans. The big one finally arrived on Aug. 11. Meeting with my orthopedic surgeon was everything we could have hoped for. The pathology report showed the removed cancer to be a grade 2 chondrosarcoma with clear margins. The doctor was very pleased with my healing and gave us a very manageable follow-up plan that didn’t require returning to Lancaster. Our meeting with the vascular surgeon the following day sealed the deal as he signed off on my care. This left us with just the final work of emptying the house and saying goodbye to friends.

Most of the stuff left was all the little stuff, but then there was the mattress. Sleeping without one wasn’t an option for me so we had negotiated with someone to purchase it on the day we were leaving. Then he cancelled. This left us in a very stressful situation as we couldn’t just leave it there. I posted it on Craigslist for $10 and the phone started ringing. The first person said he could be there in 15 minutes. When thirty had passed, I called to reach a voicemail that hadn’t been set up. So I moved on to the next person who wouldn’t be able to be there for several hours. The third person likewise didn’t show so onto the 4^th person. Another no show and feeling desperate so I reposted it under free items and another round of phone calls ensued. This is one of those things that I think we will look back on and laugh. Who knew it would be this hard to give away a queen bed? Finally, someone picked it up, the last few trips were made, and it was time to go.

Leaving Lancaster is definitely bittersweet. So much excitement about being on the road and starting the journey, but we are leaving really good friends and great memories behind. They will all be missed. 

Leaving a day and a half later than hoped means for longer driving days but on our second day on the road, a call from our realtor let us know that we are officially homeless! Somehow for me, it makes it all so much more real.

Goodbye, Primal - Carver

One of our cars (Primal) is being sold today. Primal is the name of the car because we name our cars. So we will only have one car. Another big change but this doesn't matter so much because my mom can't drive yet.

But more goodbyes. Goodbye, furniture. Our dining room table is gone! Lots of furniture is gone. Organizing stuff is harder but soon stuff will no longer exist. And very soon Goodbye, house.

Chondrosarcoma - Alrica

After all of the back and forth with the pathology, we were pretty confident that things were benign . . . until I got a call from my surgeon's office that they'd like me to come in. That is never a call you'd like to get. One of the oncologists from Penn who had looked at my biopsy samples diagnosed me with a Grade 1-2 Chondrosarcoma. With only a week until the scheduled surgery and my surgeon on vacation, they offered to push back the surgery. That was the last thing I wanted so we pushed ahead and started thinking through how to plan the next couple months. Chondrosarcoma is an extremely rare cancer of the cartilage. It falls under the group of bone cancers but has very different characteristics. It tends to be slow growing and less likely to spread and almost entirely removed by surgery.  It doesn't respond to chemo or radiation.

Canceling our trip was never really a discussion, but we learned that our surgeon would want three month follow-up scans for years and that there may be significant recovery time. The surgeon agreed to meet us on Saturday to go over all of our questions, and we were back to waiting and more research. Happily, my mom was able to fly up and stay with us. Her background as an RN who had dealt with post-op and oncology helped me talk through all my questions and concerns.

Our meeting with the orthopedic surgeon was pretty hard. We talked through the plan of attack and best and worst case scenarios. This would be the 5th or 6th one of these that he'd dealt with but given how rare they are, that isn't bad. Based on where the tumor was sitting, his plan was to open me up and saw through the superior pubic ramus and remove several inches of bone along with the tumor. The vascular surgeon would handle any vascular interference and move the veins out of the way. One of the likely side effects would be life-long swelling due to vascular damage or nerve damage. Worst case scenario would be if they found vascular interference with the main femoral artery. The likely treatment would then require amputation of the entire leg.

5 AM on Monday morning finally arrived. After getting up and showering with the special soap, I kissed the kids goodbye and Erich and I drove into the hospital. It was a couple hours with various medical people hooking me up to IVs, answering questions, and then just emptiness until I woke up in a hospital room with my family around me.

I was sleepy and pretty confused upon waking up. Everything seemed to move in slow motion - especially me. I got a brief report that everything had gone smoothly and I was out again. By early afternoon, I had seen both surgeons who had nothing but good things to report. The veins and arteries had gone right back to normal, they felt there was no damage to the nerves, though I'm still numb throughout my upper thigh, and most important, the tumor came out as one piece and they think they got it all! Now the healing begins.

At a week and a half post surgery, I'm slowly trying to lesson my dependence on pain meds. I'm also trying to find a balance between the surgeon's advice to not overdue it and to be up and about as much as possible. While the bone that was removed won't ever grow back, the surrounding bones will strengthen to compensate if I continue to make them work. Whether I'm laying in bed or up and walking with crutches, by end of day, I'm physically exhausted and yet sleep is not coming easily. I  can only sleep laying flat on my back and I still frequently need help getting in and out of bed as my right leg muscles are stressed and sore and just refuse to move on command sometimes.

And I try not to dwell on the emotional side of things. I'm part of an online support group for people with chondrosarcomas - there aren't any real life support groups because of the rarity of the disease. One of the recurring themes with the group is how so many of them feel "lucky to be alive." I don't feel lucky.  To me lucky implies that I had done something to deserve this and it worked out okay despite my foolish choices. I feel angry that this has happened to me and I hate how it has impacted myself and my family. I hate that this will always be hanging over me. I will need to do follow-ups and I will have this "pre-existing condition" forever. I'm hopeful that the pathology report will determine that the cancer is gone, or maybe that it wasn't there in the first place and I can heal and put all of this behind me. I'm working on not wasting emotional energy on my anger.

In the meantime, I wait through this limbo and plan through different scenarios based on Tuesday's post-op check.