Saturday, February 29, 2020

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.





Thursday, February 20, 2020

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. )

Tuesday, February 18, 2020

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.

Saturday, February 15, 2020

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....

Monday, February 10, 2020

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.

Wednesday, February 05, 2020

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.