Miscellaneous

We've had a normal, busy week.

There was a wild wind storm to start the week off.

Will had to do some running around to work on our residency.

Thursday was a musical day, with Asya competing in a flute contest and Bogdan required to attend a special bandura concert. Both events were lots of fun.

Friday our neighbour was fixing storm damage on our roof, and our kids got to help him. While they were doing that, we tried--unsuccessfully--to turn in our residency applications and documents.

Tomorrow Will and I go to Kyiv for my MRI and to wrap up my treatment at the clinic.

~~~~~

Photos are from back when we were in Kraków. I wrote about Wednesday before; here is Thursday:

We met up with our friends on the central square to go to a museum there.

I also experienced this, but no one took photos. I loved it. There were so many pigeons that I thought they would crush me! Their man ground a handful of grain down into my hair, and I didn't get the last crumbs out until evening.

But, the museum.... It's located under the square, and it shows the history and archeology from right there. It was Bogdan's favourite part of the whole trip. Most of it was dark-ish and photography isn't allowed, but I got these two photos in the children's room and on the way out, where you can see archeological digs under the floor. We almost couldn't drag Bogdan away.

Then, back up on the ground level, we listened to the trumpeter. That was very important to Asya. I have a video from her to post later.

We had lunch with our friends, then said goodbye to them and set out to find the Harry Potter cafe that Raia's art school friend had told her about. We knew what street it was on, and thought that would be enough. Hah. We walked all the way down it, then back up, asking people and looking at every building. It was getting dark and starting to rain. At one point Raia ran ahead of us, trying to follow a map on my phone. That led her to a spot on the sidewalk, with no cafe in sight. After at least three times passing it, we finally we found it, down a hallway to a courtyard and in a basement. It was worth the search! Our kids enjoyed it so much. They tried butterbeer and took tons of pictures and just revelled in being there.

A little more

(I just like this one.)

My doctor decided that I need an MRI to be completely sure that my brain is still clear before I can be officially done with treatment. Will and I will go to Kyiv on March 2 to have that done. The doctors will meet that same day, and we'll have our consultation with my doctor then, instead of by telephone, like we were thinking.

One of my biggest questions is about the remaining tumors and lymph nodes. All we know is that the PET scan results are "good." But when I look at the results, it seems to me that there are still active lymph nodes. Some tumors are still there, but they are apparently inactive and shrinking, which is very good. Of course, I'm not a doctor, and I really can't understand what I see in the results.

I recently started reading a book called The First Cell (and the Human Costs of Pursuing Cancer to the Last). It seems that we're not pursuing to the last, and I like that. Everything is going in the right direction, and immunotherapy often keeps working even after treatment, so we can stop now. There haven't really been terrible "human costs" in my journey so far. It's been hard, of course, but I don't feel like they are killing me to kill the cancer. Let's keep it that way! It would just be nice to hear that the cancer is completely gone, though.

Also, at the very same time that we were starting to wrap all this up, the GoFundMe campaign for me reached its goal. You all are so utterly amazing and generous! I can't even express how thankful we are. I haven't said much about it, because I just haven't known what to say, and because you have given me the luxury of not having to even think about money. It has been wonderful to not worry about the financial side of all this. The estimate was for a year of immunotherapy, and now it looks like we're finishing up at more like nine months than a year; there is more than we needed! However, the hard reality is that such advanced metatastic cancer usually comes back. We will keep that money set aside, in case of further treatment...and pray hard that we never have to use it. (Except for follow-up scans that come out completely clean. )

PET scan... results?

Yesterday morning we got the preliminary results of my scan, but we couldn't make heads or tails of what was in there. So, we forwarded it on to my doctor. She didn't answer until late, when I was already in bed. All she wrote was "Good evening! Results of the blood tests and PET CT are good. Therefore we plan to stop treatment with that." Will asked her about a telephone consultation, and, yes, that will come later. It sounds like the doctors have to get the disk and final results of the scan, then have a meeting and discuss and decide formally. After that we should be able to find out more details. For now that's absolutely all we know. It sounds pretty good, but of course, we still have many questions.

The first few Poland pictures

I'm back from my PET CT scan, Will has started on our residency paperwork (it's much more relaxed with 90 days now, instead of the 45 we had years ago), and today is the last day of quarantine, unless they extend it again. So, I'll start to tell about our trip to Poland:

We flew to Kraków on a Tuesday. Some friends of ours happened to be on the plane with us, and their little girl was thrilled to see our girls. She entertained everyone on the plane with her joy in her first flight, too. When we arrived, we said goodbye to those friends, and our Kraków friend met us and drove us to the apartment we had rented for the week. He had a whole bag of food for our dinner and breakfast. We ate and went to bed. That night, between some very loud neighbours and not-so-good sleeping arrangements, we didn't sleep much, but we survived.

Bogdan drew this view.

The next morning Will and I went to Starbucks (!), then the Ukrainian consulate to apply for our visas. Our kids stayed by themselves at the apartment. (They don't need visas.) The consulate was packed with people. They accepted our documents, but weren't sure about our insurance. It's the insurance we buy every year for residency; still, the man behind the desk said that he would need to ask about it. We went out to pay at their bank, then back to the consulate to show that we had paid. All that took a while. Then we were supposed to come back again at 2:30. So, we walked to the apartment, ate lunch, and rested a little. When it was time to return to the consulate, we all went. We planned to pick up our visas, then walk on to our friends' house. The consulate decided that our insurance wasn't enough. It's good for living in Ukraine, but not for entering Ukraine and for the 90 days after entrance that the visas would be good for. So, Will went off to buy more insurance. The man warned him that it might be hard, because most places don't want to sell to non-residents, but he gave him several options to try and told him that he would wait for him to come back, even though the consulate was closed to visitors. The rest of us walked on, saw ducks in a creek, and enjoyed time with our friends. When Will was done, Jon picked him up, and we all had dinner together. 

Drawing, first thing in the morning

To record the fact that she was practicing

First picture of the ducks in the creek

That night we arranged everything better for sleep, and our new neighbours were quiet, so we were much happier. There aren't many photos from that first day, but get ready for lots from the rest of our time in Poland....

PET scan plans

Tomorrow night I'll travel to Kyiv for my PET scan, which will be on Wednesday at a new-to-me place out beyond the edge of the city. PET scans use radioactive sugar to show how active tumours are. The CT scans I've had before this just show size and shape. It sounds like this will be quite a procedure. Will called to see if they could take me earlier in the day, so that I don't have to fast as long, and they said, no, melanoma patients always go last, because their scans take the longest. I can eat breakfast though.

We had planned that I would stay overnight afterwards in Kyiv and see my own doctor the next day to go over the results, but again... melanoma. They say the results take longer than with other cancers, so we cancelled with my doctor. I'll just come home that night, and when we get the results (around 3 working days), we'll email them on to my doctor.

Please pray for my travels, the actual scan, and for good results, of course! It is possible that this scan could show that what is left is not active cancer, and then I could be done with treatment.

Home from Poland

We are home from what turned out to be a really wonderful trip. As I sort through photos, I hope to post a bunch more. Thank you to everyone who was praying!

We have been getting questions about the visa and residency process here, so I'll try to explain a little. Americans can visit Ukraine for up to 90 days without visas. However, if we want to live here, we have to have residency. That means getting a short term entry visa outside Ukraine and then applying for residency back in the country. Then, with temporary residency like we have had, we renew every year in Ukraine... if we get all the right documents in on time and they don't change their holiday work schedule, like they did this year. We've renewed for seven or eight years before this without any problem.

So, now that we're back, we will get all our documents together again and go apply for residency. Getting visas was just the first step.

Also, we came back to this:

School quarantine! Flu and cold season reached the official threshold to close schools. Music school is closed for all group lessons. Individual lessons are still available, if the student is healthy and the parents aren't afraid. Our art school is private, and they're choosing to stay open. It will actually be nice to have a little bit of a chance to catch up on our homeschooling, as our kids stay home from group classes and rehearsals. Although we'll still send everyone to individual lessons.

Update before Poland

I've been so, so tired since my most recent treatment, and we've been busy with all our usual life, plus preparations for travel. All is well, though. The documents we need on this end are ready. Will did get our visa applications switched to Krakow, so we'll fly there on Tuesday and turn in our documents on Wednesday. Then we should have our visas and free time to enjoy Krakow, until our flight home on the 4th.

These cheap plane tickets we have don't include baggage or even full sized cabin luggage, so our girls are having fits about how they're going to pack. Asya's flute teacher is also trying to figure out how Asya can practice in Poland. Today she sent home a lighter flute case, hoping that Asya can somehow take her instrument with her in that.

I am also set up for a PET scan on February 12. When Will called the place my doctor recommended in Kyiv, they didn't have anything until May 22! And we couldn't connect with anyone in Poland, even with Polish people helping and trying to make calls for us. But, there's another place outside Kyiv, and they'll take me. So that and all those travel arrangements are set for after we get back from Poland.

School with Cinnamon again

Keytruda #11 (and no Warsaw?)

The travel itself wasn't fun, but otherwise I had a really good trip this time around. That's just what I needed after the difficulties last time. My friend Anne gave me her whole day. The time at the clinic went smoothly and quickly, and then we had lunch and went back to Anne's to rest. In the evening her small group from church came over, and I got to meet them (and all their babies!) before my train home.

Anne took this photo.

My blood work was good, and there weren't any problems. My doctor said that I have had such good results with Keytruda, that it might be time to start talking about finishing treatment. So, she wants me to get a PET scan, instead of scheduling another Keytruda. It is possible that what CT scans show as remaining tumours might just be dead tissue, and a PET scan should tell us if that is the case or not. There are only a few places that do them in Ukraine, so it can be hard to get an appointment. When she heard that we're going to Poland soon, she jumped on that and suggested that we do it there. My friend in Poland already did some research for me, and Will's going to call to the other option in Kyiv today. Then we can decide when and where and how.

Also, there are visa appointments at the Kraków embassy now, so Will is going to try to pull our applications out of the Warsaw queue and get us in for Kraków.

I seem to be even more tired than usual this time around, but otherwise I feel fine. I'm enjoying naps and early bedtimes. As always, it's just really good to be home.

2nd Christmas, back to school, and Warsaw

We had a really nice "2nd Christmas." Will and the kids went to church, while I watched online. They brought home gift bags for our neighbours. Raia went to a Christmas play at another church with her friends, but the rest of us had a nice Christmas dinner at home. In the evening, after Raia rejoined us, we went around to our closest neighbours to carol. Some of them had been waiting and asking long in advance. This year Asya played her flute for them, too. When we got back to our own house, we took treats over to our neighbour here. The mother and children are in Crimea for the holidays, and we miss them terribly. Their father got them on Skype for us, though, and there was a joyous virtual reunion. (They should be home soon. Hurrah!)

The next day we started back to school. That's going well. Only Bogdan got a cold, so he hasn't been able to go back to music school, but it's not slowing him down otherwise. His teacher was cancelling lessons yesterday, too, because she was sick. I'm hoping all will be healthy to start again soon.

And... Warsaw. We already made our travel plans for Krakow, and that's the only flight anyway. However, when we tried to turn in our visa applications online, we found out that there are no appointments at the Krakow embassy this month or next month. We had to do something, so we applied to Warsaw. Now we'll fly to Krakow as planned, spend the night, and then Will and I will take a train on to Warsaw early the next morning, while our kids spend the day with our friends. When I told Bogdan that they would be staying with our friends for a day without us, he wanted to know if these friends speak Russian. (He calls them "the friends that I don't know," because he was too little to remember anything from the last time we were together.) I told him that no, they don't speak Russian... or Ukrainian. They speak English and Polish. He was upset. I reassured him. Then he gave a big sigh and said, "Well, that's better than Chinese."

We will go back to Krakow that same day, and we're really hoping that we'll have our visas with us. Somehow. But Warsaw apparently takes 10 days to process, although that can be expedited to 5. Could they be ready on that Monday? Maybe Will can go back again alone to get them, just before our flight home Tuesday? Or something. We need lots of prayer, for that part and that our documents here will be ready in time; the offices here can be notoriously slow.

Poland

In trying to remember the last time we went to Poland, I went back through old blog posts. I remembered that Bogdan had his first birthday while we were on our way home, so it was 2012. Everyone was so little!

And the time before that, 2010, Asya was the baby in the stroller. I'm thankful that we can fly this time, and that everyone is so grown up and independent now. They don't really remember much of anything, so it's going to be fun to discover it all over again. We're rereading The Trumpeter of Krakow, and I found some other books for us, too....

Christmas program and travel plans

Today the art school and the children's ministry team that Jaan and Raia serve with put on a Christmas program. Asya and Bogdan attended the first run through, and it turned out that Asya was in Jaan's group, and Bogdan was in Raia's. The teens guided their groups through crafts, cookie decorating, the Christmas story, and other activities. Then they did a second run with different kids. Here are a few pictures that they shared with the parents' group:

And travel plans: there are brand new weekly flights on a budget airline straight from Kherson to Krakow. So, on January 28 we are going to fly to Krakow to apply for new visas. We're all starting to get excited about seeing our friends there and doing some sightseeing. We want it to be a really fun and educational trip. Please pray for us (and Olga, who does paperwork) as we get all the papers ready, and then as we travel. Pray especially that I'll be strong enough to handle the travel and enjoy it all.

Happy New Year!

Merry Christmas, Happy New Year, and Merry Christmas again from all of us to all of you!

Thank you for all your love and support through what has been a very hard year (but not a bad one). I hope the year ahead will be a little more gentle to us, but no matter what, God is good.

I love our art school!

Saturday, when I was in Kyiv, Will had to be at Migration, Jaan and Raia were busy with youth events, Asya had her last art classes before the break. What to do with Bogdan? She took him with her. And, instead of just making him sit and wait for her, apparently they pulled him right in and let him be a 6th grader for the day.

Then, yesterday, when four of us were sick or plain exhausted, weather was icky, our neighbors were leaving for Crimea, and Asya and Bogdan were going stir crazy, I remembered that art school was doing some extra master classes. One was starting in about an hour. I called and registered Asya. Again, Bogdan was officially too young, but they said that of course he could come, too. After one class, Asya called me and asked if they could stay for another. I had only sent money for one, but they got permission to pay later. So, they were two very happy children!

Keytruda #10 and document troubles

I'm home after another trip to Kyiv. My blood tests looked good (except for anemia), and at the end of the day I got the Keytruda. I had a really rough morning, though. At first my blood pressure dropped, and I passed out and felt awful. They gave me an electrolyte IV, before we could even get down to business. But it worked out, and I was thankful again that everyone is so nice there! The doctor added a medicine for diarrhea to my routine, so hopefully my stomach will be happier this time around. Tentatively, I can say that it already seems somewhat better. I ate like a queen while I was in Kyiv; I tried a fancy Chinese restaurant on Friday, and Saturday I had a holiday special turkey dinner at our favourite cheap restaurant chain.

While I was in Kyiv, Will found out really bad news here. Our residency comes up for renewal January 21. We were on top of things and started the process early, so that everything would be ready to go in on January 2 when they reopen after New Year. But their schedule changed, and because of that, Friday was the last day we could submit documents. It was already too late in the day then, and I wasn't present. So, after a sleepless night for the wonderful lady who does our invitations and lots of appeals the next day, the final decision is that we have to leave Ukraine, apply for new visas and start the residency process over again. This is the very short, unemotional version of it all. It's not short and unemotional in real life, though.

Also, I have a cold, and Will's not feeling great.

Please pray for us!

Almost (1st) Christmas

Well, I haven't been asleep all the time for the past few weeks, but I certainly haven't gotten around to writing. I said I would write about the fun our kids had when we were in Kyiv, so I'll try to jump back to then. When we walked out the door, Jaan and a friend were in the kitchen making brownies, not without adventures. They had a party for their church theatre group the next evening, so they were preparing for that. Apparently the brownies turned out wonderfully, despite the adventures: yummy and even decorated with an inside joke for the theatre. I got photo updates and gave advice long-distance off and on throughout the process.

Asya had plans to spend the night with a friend, then go to a music contest first thing the next morning. She was very happy about all that.

Friday evening Bogdan also had an extra ensemble rehearsal at music school. Before I heard about the party, I had planned that Jaan would take him to that, sit and wait for him, then bring him home. Asya was going to be gone, Raia had an art class, so the boys would have a quiet evening together. Hah. But they had fun. Jaan dropped Bogdan off at music school early and arranged that a friend who lives at church would bring him over afterwards. Bogdan was so excited to get to be with Jaan! At the theatre party!

(I took this from someone's FB page.)

After art Raia went home with friends who live right by the church, to wait until Jaan's party was over. As we were getting on the train in Kyiv to come home, we got a frantic call from our wonderful neighbours. They had tried to check on our children before bed, but nobody was home. When I called the kids right after that, I told them to be sure to make noise when they got home, so that Aunt N would see them and know they were okay. It was reassuring to me to get that call, even though I was sorry to have scared them.

Diagnostics and Keytruda #9

Thank you so much to everyone who was praying for us! Two night trains in a row makes for a hard trip, but still everything went smoothly. Yesterday morning our train got in to Kyiv late, but I was still on time for my scan. I don't like those scans because of how much the contrast hurts, but this time I didn't even feel it. After the blood tests and scans, we had breakfast in the nice restaurant at the clinic, then set out for a walk. They called us back almost right away, though, to let us know that our results were already in and my doctor was ready to see me.

I posted the basic idea on Facebook already, so there wouldn't be any suspense, but the details are that the biggest tumour was 47x38 mm in August and is now 38x25 mm; next biggest is not visible (but I can still feel something there, so we're a little puzzled); last one was 24x18, is 13x9; lung spot was 7 mm, is 5 mm; all affected lymph nodes are slightly smaller than they were. And my blood tests were decent, so we could do another Keytruda treatment, after I rested and drank water for a few hours.

Honestly, I was surprised that everything pulled together like that. Last week was really hard, and I thought it meant the end of Keytruda, or at least a break. But, we got a really helpful, really optimistic gastroenterologist in Kherson on our side, and all her supplements and medicines are making a difference. (So I can forgive her for an awful procedure she had me go through to get diagnoses!) Which means we keep going.

My next appointment in Kyiv is set for December 27.

After the clinic yesterday, we still had some time before our train, so we explored a little and enjoyed a nice dinner.

And then we came home. Oh, almost every time I've travelled back and forth, there has been someone I know, or at least am acquainted with, on the train with me. This time we were waiting to board, scanning the crowd, and joking about who it would be this time. It turned out to be the bookkeeper for the Christian institute and our church. Not only were we on the same train, we were in the same wagon. Usually we only see her once a year--for about a week--while she works on our residency renewal. Her daughter was recently diagnosed with cancer. We've been praying for each other from a distance, but it was nice to talk a little now.

I am so, so thankful: for good results, for good treatment, for friends and people we don't even know who are making this possible, for my home and family, and for so much more.

Our kids did well and had lots of fun while we were gone, so I'll try to write about some of that in the next few days. If I can get my eyes open.

Beautiful autumn...

...is already gone. But I enjoyed every minute of it while it was here! The beautiful part seemed to be longer and warmer than ever this year.

(My anxiety is gone, too. Joy and peace are back. Maybe it was more seasonal blues than anything related to cancer? The sun is actually out today.)

These photos are all from back when everything was at its peak of beauty. First, walking Bogdan to and from music school, then other times in our yard:

Our house

I enjoyed lots of reading in the leaves.

Everyday life

So, now it seems like the first week after Keytruda my stomach is upset, and then it settles down. When I said "trying to eat even better" in my last update, I didn't mention that it's kind of hard to eat better than I do, because I already eat like a walking health food store. But, I'm trying, and my stomach is handling it better again already.

Jaan has a cold. Pray that he won't pass it on. He had to call in sick instead of making coffee at church today.

We're busy with music school. Asya played at a festival last week. She had an exam today, and I haven't seen her yet to know how that went. Bogdan has his first ever performance tomorrow; as far as he has caught on, it's a concert, but really it's a contest. Raia will be competing, too. Sunday Asya will be in a big televised orchestra concert.

Jaan and Raia are going to a youth conference Friday-Saturday.

After the conference we'll meet them at our friends' house for Thanksgiving.

I have had some times of anxiety about my next scan in Kyiv. Please pray for me. Overall, my whole experience from diagnosis on has been joy, so feeling worried has been an unpleasant surprise. If the first four treatments made everything 50% better, maybe the second four could finish it all off? I just don't see the signs of that, though. So, my prayer is "Lord, I believe, help my unbelief." And you can pray with me.

I've been wanting us to try acrylic painting, ever since Will gave me a new paint set way back on my birthday. We finally got around to it with this video. Fun! One painting is still unfinished, but it's going to be as beautiful as the others when it's done, too.

Most mornings we let Cinnamon out to run around. Then, right at 9:00 she automatically goes back to her cage to lie down while we start school. A few mornings ago she came to join us in our studies, though. Feet lined up on the couch and her in the front row:

(Asya just called. Her exam has been postponed until Saturday.)

Remember the physical therapy for kids from the orphanage? After a break for the summer that's still going strong, thanks to generous sponsors. We had a little bump in the road yesterday, though. Because Ukraine now has car seat laws, the orphanage isn't going to transport kids without them anymore. So, my friend the therapist called me yesterday to find out if she had to cancel today, or if I had any ideas. With lots of phone calls, and some digging by Will, we got car seats, so therapy goes on.

I know I had other things to write about, but I need to send a cute little neighbour back to his side of the house and take a cute little son to music school....