The forest (and more)

We're doing well here. Music lessons have started back up online. The little store that Will went to almost daily on his way home from the office put up a sign offering delivery. We were the first to try it, and when the security guard came with our first order he told Will that he was terribly nervous. It's working well, though. Because Will knows exactly what they usually have, it's easy for him to make a list, and then they bring it to us; no fancy online systems or anything.

Living with another family makes quarantine much more bearable. We've settled into a pretty good routine where both families do their schoolwork separately in the mornings, then they five youngest play outside together afterward. If the weather is bad we alternate days with them on our side of the house or the other side, so both sets of adults get times of insanity and times of quiet. Of course, if the virus gets into the Muslim community, we're doomed. Even though they're mostly not in contact with anyone outside of family, they seem to consider that whole community family.

After two full weeks of quarantine we went to the FOREST on Saturday. It was amazing. We arranged with a minivan taxi driver we know to drop us off and pick us up. We walked around, ate our picnic, built a "house," and really enjoyed being together and in nature. A funny/ironic/sad example of social distancing did happen. We walked way out to where there really shouldn't have been any cars. However, when we finished eating, we saw two cars struggling through the sand to park on the other side of some bushes from where we were. They unloaded, made a bunch of noise, let out a dog and a bunch of little kids, and got settled. We grumped some about people invading our space, packed up, and walked on. Then, that evening when we got home, we saw that friends from church were posting on Instagram about how they had decided to go out into the forest, but so had "all of Kherson" so they had to go out into the very depths of the forest...and we realised those two cars we had grumped about were our friends! Kherson is a city of more than 200,000, and we went to the forest way out over the river, and we were still with friends. We just didn't get to actually enjoy being with them.

As I said before, I have a PET CT scan scheduled for April 28 in Kyiv oblast. Right now quarantine (i.e. no trains, planes, or buses) has been officially extended to April 24, and it could go on beyond that, too. Please pray that travel would be possible and safe by the end of April and that we would have wisdom to know what to do. My doctor does want me to have that scan done, and there's nowhere else in Ukraine that does them.

Quarantine and more

About the quarantine: Ukraine pretty much shut down at the first few cases of corona virus. Schools are closed. There are no planes or trains going. Other public transport is very limited (and this stops movement much more than it would in America). All stores except for grocery and pharmacy are closed, as are cafes, restaurants, anywhere that people would gather in groups of more than 10. However, people aren't panicking. I realised that a lot of this is very familiar. We've been through it before in all the turmoil of various events. I was talking to one of our neighbour babushki, and she said, "we're used to it," which confirmed what I had been feeling.

I went to church one time between the end of my own self-quarantine and the beginning of corona-quarantine. This week was at home again. Today was different, though. Instead of just watching online by myself, my whole family was with me. Everyone else was watching from their homes, too. It was a 5-hour praise and worship marathon, not a regular live streamed service.

The past few Saturdays Will and I have sent out kids off to their activities and then gone out for coffee. Yesterday there weren't any activities, and we knew Will's favourite coffee shop was closed and others probably were, too. However, we decided to go by a coffee chain that I like. They are working in a no-contact fashion. Their entry is blocked on the inside by a table, but you can open the door, call out your order and set down your money. When it's ready, the girl inside--wearing a mask and gloves--sets your coffee on the table, steps back, and you open the door again to pick up your order. So we got coffee and walked around some more. Spring isn't cancelled.

Also, at least for Asya and Bogdan, they're content to be quarantined, since their friends live in the same house with us, and we have a great little yard to play in. For the older two, I'm requiring outside time every day, we're going on more walks to replace the exercise they usually get, and they're finding some new ways to connect to their friends with technology. Yesterday their church ministry group "met" on Viber. We also got lots of regular school done in the past week, since there wasn't anything else to do.

And not about the quarantine: our art school entered pictures in an international contest. You can see our kids' pictures if you put Хансакер in the search box on the gallery page (or click here). Bogdan and Raia were chosen to go into the next round! So, we've been working on arrangements for that. We had to mail their work, fill out forms, photograph documents, and now we'll be going to Lviv at the end of July or during fall break. It sounds like it will be really fun: an exhibit of the kids' work, excursions, master classes....

The photo shows Raia in the tree photographing the sunset, while a Monopoly game goes on below.

Health update

We're now two months out from my last immunotherapy treatment, and I can tell that I feel better. I'm finally less tired. Will's complaining that I walk too fast now. My digestive system is also settling back down. I'm only barely underweight. I continue to eat very healthily, lots of fruits and vegetables, and no sugar at all.

My second PET scan is set for the day after I was supposed to come back from England: April 28. We had hoped that I could have a wonderful trip that would completely distract me from dreading it, and then do it as an afterthought on my way home. It sounds like the England trip won't be happening, but if internal Ukraine travel is possible, I'll just go to Kyiv for the scan.

Photos of Friday in Krakow

On the Friday when we were in Krakow, we met up with Karen and Clarissa again to see the Collegium Maius Museum. This was my favourite of the museums we visited. Copernicus studied there. Will says that it feels like Hogwarts.  It's beautiful and old and full of all kinds of interesting historical scientific instruments. There's only one English tour a day, and we went on it. Our only complaint is that it moves very fast. It would have been perfect if we could have run through with the tour guide, then gone back and moved slowly by ourselves, but that's not allowed. We walked to the museum, waited a bit for the clock to perform. Then we went on the tour. And it was wonderful.

Photo for Leslie: Chopin's piano

Quarantine again

School quarantines are a regular part of life here. I seem to remember "Hurricane Days" in Florida? When schools took a day off at the end of the hurricane season because they hadn't used them? Most quarantines here seem to be like that: a normal part of school life, or sometimes they're used to bring down the number of days that the schools have to be heated. We already had two weeks of that this year. Now we're having a more serious quarantine for the next three weeks because of coronavirus. Music school isn't even doing individual lessons.

I feel a little strange, because I was just crawling out of my own self-quarantine from the whole fall and winter. Sunday and Monday I went out, and it was wonderful! Church, fellowship, shopping, talking with acquaintances while wandering, no mask.... We bought my tickets for the England trip, and I'm really praying that it won't have to be canceled. The tickets weren't expensive (Ryan Air), so mostly I would just be sad, but others would lose so much money, if they can't come.

Our dear friends were moving back to America at the beginning of April, but they had to bump their plans forward, go right away, and leave their beloved dog. In the overall scheme of things it's not a big deal, but we're sad about every lost moment that we could have had with them. It's good that they'll be back with their own family, though. Just sad for us. It feels like what happened a year ago when other friends had to leave unexpectedly, even though we all knew that their time here was eventually winding down.

A few days ago, in the midst of trying to sort out how the national quarantine would filter down locally, Bogdan and Asya had concerts/"listenings." (I don't know how "listenings" translates; it's when they play just for the school director and principal to decide if they're ready for a big performance or contest.) They ended up doing concerts without audiences, although for the bandura ensemble, they let us parents stand in the back and listen.

Waiting for their turn

The little girl from Grade 0 is just so cute!

Not my photo, but it's the only one where he
didn't look like he was dying.

(Videos from another parent and a teacher.)

Bogdan's birthday

Yesterday Bogdan turned NINE. We started off with our together school time. Then he opened the box from our North Carolina relatives. (Thank you!) Bogdan got to play for the rest of the morning, while the others did school.

Thursdays are his biggest day for other classes, so he left with Will for his music lessons. (The last lessons before another quarantine went into effect at 2:00.) Birthday preparations continued here at home.

Then, after Will transferred Bogdan to art school, I went there with cupcakes for their tea break.

Dancing :-)

After art we hurried home for the big event: cooking dinner over a fire! Bogdan and his friends have been desperately wanting to build fires for the past month or so. I finally suggested that we do it for his birthday, so anticipation had been building for a long time. I think it was a real success, too. Everyone was so happy! The oldest of our neighbour children had gone on Asya's birthday excursion, which was a big deal, and she kept repeating that she didn't know whose birthday was more fun, Asya's or Bogdan's. A backyard fire may have outranked Jump Park and MacDonald's. The boys built the fire, Will grilled the meat, and then everyone cooked sweet dough for dessert. Towards the end our neighbours had some guests arrive, so the number of children grew almost exponentially, and it was very happy chaos while they finished off every last crumb.

In a good place

I almost called this "In Limbo," because it's not cancer-free, not No Evidence of Disease, nor full remission. But still, it's good, so we'll go with that: I'm in a good place.

I knew we would have a full week, just by starting off with a Kyiv trip, and then jumping into school and documents and life. So, I posted a very quick update on Facebook while we were still in Kyiv. This is the longer version.

The MRI went fine and didn't show anything bad. I really don't like them, but I did better this time, because I knew what to expect, and because I imagined myself in a picture I like. My doctor was out sick, so we got the head of the chemotherapy department, who I also know and like. She explained that my PET scan was good, but not without areas of concern. They want me to have another in 1-1.5 months. Ugh. Her write-up actually says "stop immunotherapy until diagnostic scan to show tumor dynamics," or something like that. And I'm supposed to keep having blood work done and gain a few more kilograms.

She explained several reasons for stopping immunotherapy. One thing is that it's always a balance of effectiveness with side effects. Side effects haven't been too bad for me, but they are there, and we don't want them to get worse. Another thing is that immunotherapy can keep working for an unknown amount of time even without regular infusions. Also, as there are less targets for it to hit in my body, it's more likely to turn against me. I do like this plan of stopping while we're ahead.

The next PET scan will actually probably be a little more than 1.5 months out. I think we're going to schedule with the place in Kyiv that didn't have any openings until the end of May before. Then we can see what my doctor thinks of that, and change plans if she thinks it's too long to wait.

I feel like I can't quite fully return to normal life yet. However, I am going to start going to church again. And, this is really exciting: I'm going to plan a trip to England! I had been dreaming about joining some of my friends on a trip there in April, and it looks like it is actually going to happen.

~~~~~

On Monday, when we were in Kyiv, Asya had a concert here. She said that didn't mind that we would miss it, because she thought was only going to play one song that we've heard many times. I didn't want her walking home in dark alone afterwards, though, so I asked if any of our friends wanted to attend and see her home afterwards. Uncle Joe did. And I was very glad that he recorded one song, because it was the first time Asya and Ira had played it in public. We have a few pictures from him and the teachers, too:

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.