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. 

Medical Update and House Sale - Alrica

Well, major changes in the past few weeks and we are overdue for an update. If you have been following, about the same time as the house went on the market, I went to see a doctor about swelling in my right foot. This led to a discovery of a "mass" in my right hip region that sits wedged between the bone and the main femoral artery. The compression of the veins was causing the swelling, but 3 CT scans, 3 ultrasounds, and 2 biopsies later, we still don't know for sure what it is, but we want to take it out. Our best guess is that it is an osteochondroma which is basically cartilage that grows abnormally as we grow, so it shouldn't happen to people older than 16, but perhaps the most important thing is that we are reasonably certain that it is non-malignant. So I go in for surgery on July 6 and, until then, I continue to do the twice daily blood thinner injections to reduce my risk of blood clots.

Our expectation is that the surgery will go smoothly and this problem will be completely taken care of. They expect me to be in the hospital for several days (I welcome visitors to take my mind off the boredom!) and then home on pretty serious limitations. No showering, lifting, stairs, etc. for at least two weeks. Then taking it easy. As you may know, our plan had been to be out of Lancaster by mid-July so this is obviously going to delay things - probably by about a month since air travel is forbidden until late August. If I am healing appropriately, we plan to leave Lancaster around July 26 to see friends and family here in the states. We will need to drive slowly so that I can get out and walk every two hours.

Since all of our plans for the order of our trip were based on flying in early August, we are rethinking our route. In order to lighten our load, we don't plan to take winter coats and Prague is getting pretty cold by end of October. We may end up starting in South Africa and hitting Europe later in the trip but a lot depends on how I heal.

In the meantime, we have accepted an offer on the house with a close date of July 31. Since I will be unable to help during those last few weeks, I'm trying to get everything done now. It might mean living without furniture for a bit, but that is better than expecting Erich to carry heavy furniture down the stairs by himself. Wish us luck!

Friends and Plans (More on change) - Carver

My last post was about how I didn't like losing things and adapting to change. This is more on change.

Friends - There is more change to happen that is not leaving behind things but more leaving friends. I can still talk through technology (technology can do so much now) but it isn't the same. That is harder to adapt to than losing things. I am sad to leave my friends. But this is more change and I will have to deal with it like all the other change.

Plans - You would assume that was the end if you hadn't seen the title but there is more change for me to adapt to. This change is a very different kind of change, however. This is unexpected change. After lots of waiting for the biopsy and the results, we finally found out that the mass will have to be removed. It is a big lump of cartilage but it is causing problems. This will push back our plans by about a month.

Unexpected change is unexpected and hard to adapt to and expected change is not as hard because it is expected. Which one is harder for me to adapt to? I don't really know.

Early Unexpectedness - Erich

When one undertakes a journey of two years to eleven different countries, I suppose one of the things to learn is how to deal with the unexpected. And I'm sure I am not well prepared for it. But I do expect some unexpected things to occur along the way. And since I expect them, I guess that makes them not completely unexpected, more like partially unexpected.

But then the unexpected kicks you in the, well, in this case, top of the femur. Because I don't think any of us were expecting the unexpected just yet. And that's when it most wants to strike!

Last week we learned that Alrica has a "mass" at the top of her right femur that is constricting blood flow in her veins. She was admitted to the hospital. She had scans. She had a biopsy. And while no one seems to know what it is yet, the good side of it was that the tissue collected in the biopsy is not malignant. A huge relief, yes?

Of course, we weren't expecting any of this. Still, we thought the unexpectedness was plateauing. But today we were knocked back into the full unexpectedness. The osteopathic surgeon believes that the biopsy missed the mass in Alrica. He felt that the results were inconsistent with what else we know. So tonight Alrica went in for an MRI and it seems likely that the surgeon is correct. What does this mean? Well, not only does it probably indicate another biopsy for Alrica, it also means we don't know if the "mass" is malignant or benign. Because what was tested probably didn't come from the mass.

So, how do we deal with the unexpected? Just plod on. Day by day, I guess. We aren't changing our plans to travel at this point. We are just moving on with it and going to the doctors and getting the tests and doing our best to not let our dreams get shuttered away.

Besides, I am completely certain that Alrica will be fine. I call it an unabashedly positive attitude and thorough optimism. I suppose a psychologist might call it denial, but I like my spin better. Alrica is going to be fine. We are going to travel the world. And we are going to get better and better at dealing with the unexpected.