Day +135 on Christmas Eve

Two weeks before Christmas my brother Jan Arve and sister-in-law Olaug and their little Milli came to visit. This visit has been in the books for a long time, but due to colds it had to be postponed a couple of times. So it was all the more welcome when it finally could take place. We all get on so well, and thoroughly enjoy our time together. 

Isa and Milli get on well too, even if Isa, who is about 3 1/2 years older than Milli, sometimes acts like an old auntie: "oh, for heaven's sakes, what a child..." But most of the time they are little monkeys, copying whatever the other one does :-) Isa to the left, Milli to the right.

I have a spot at Hiskjo, where I frequently go to photograph the sun as it sets in the ocean. I love this one, where both sea and sky were colored pink.

During the last week before Christmas, astrological events were lined up: a full moon, the lunar eclipse and winter solstice. 

Unfortunately, I missed the eclipse due to clouds and snow. But the sky was clear the evening before, and I got some pics of the full moon. At 4.50 pm it was just raising, big and yellow. 

At 9.30 pm it was clouding over, and the ring that forecasted the snow that would come in the morning was there.

Having passed winter solstice means that the days are slowly but surely getting longer again, and we are once more heading towards summer.

Speaking of moons, Sigve's is disappearing. His hair has started to grow back in! It's very fine and downy, like a baby's first hair, but it's increasing in length and thickness. Funny thing, he never lost his eyebrows and eyelashes. He did lose all hair on his torso, and his thighs and upper arms. However, he has had hair on his forearms and legs the whole time.

The beard and mustache has been growing for quite a while now. 

It's still flimsy, but improving.

Another odd occurrence is what's happening to his finger nails. First a deep groove appeared across the nails, and then they split up and obviously the old, upper layer will fall off when the new nail underneath is fully grown. 

He showed it to the doctor, and was told that this is common. All the new nails cells are in the nail roots and when, as in his case, his whole system comes to a dead stop, this happens. I have read about it before, actually, if something significant or dramatic happens, you can "read" it in the nails. The toe nails are not affected, not yet anyway.

This year, like last year, we got lots of snow for Christmas. I love it, but I also have to admit it's unpractical. We were going to Tysnes to spend Christmas with Hilde Marie and Jon Helge, and we were taking the camper van. 

Sigve started shoveling snow in front of the camper, but during the night before, wind gusts had formed deep heaps of snow on the road, and heavier equipment was required. Fortunately, we have a brother-in-law, Gerd's husband Roald, with a tractor and plow equipment. So he cleared the road from our house and up to the main road, and we could get out.

Sigve took Isa for a walk as usual in the evening, and afterwards told me there were some cool snow shapes formed by the wind. I grabbed my camera, and thew on a jacket and boots, and got a few pictures. Fortunately, because the next morning they were gone. It was freezing cold, but there are few limits to what we'll do for a photo. 

On what we call "Little Christmas Eve", the day before Christmas Eve, the combination of fog and sunset colors turned everything bright pink.

Driving to Tysnes in the afternoon of Christmas Eve.

On reaching the farm, Isa was happy to meet her friends, 

Ira the Irish wolfhound and big Isa.

Jon Helge was busy clearing a space for the camper outside their house.

As most of you may know, we norwegians have our main celebration on Dec. 24th, Christmas Eve. Our meal is made from dried, salted and sometimes smoked, sides of lam. They are cut in pieces and left in water overnight, to get rid of some salt, and then steam cooked for 2,5 - 3 hours. Boiled potatoes, creamed yellow turnips and sauerkraut accompany it. For dessert we make a rice porridge that is mixed with whipped cream, and served with raspberry sauce. Usually we eat so much dinner that no-one has room for dessert until much later in the evening, or sometimes even the next day.

This is our  food tradition, and quite common on the west coast. Other parts of the country have different traditions. 

Jon Helge and Hilde Marie,

Geir Espen and Sigve at the dinner table.

After dinner we settle on the couch, ready to open presents.

Sigve's all time favorite snack is this particular type of milk chocolate, and he always gets a bar or two for Christmas and birthdays. He has been apprehensive about trying it again, worried that it might not taste the same any more. So he did try a piece a couple of weeks ago, and he actually did not like it! This is also a result of all the hormonal changes he's gone through, and many things taste different from before. He'll probably be able to get used to it again, in time, but it was a bit of a disappointment.

Geir Espen and Jon Helge taking a break from opening presents.

The baby is growing, and filling up all available space now. 

It's also very active; sometimes the whole bump just moves :-)

Quite a common sight in the late evening: 

I fall asleep, and someone feels the need to document it,

while others just stay wide awake.

My christmas gift from Sigve was the macro lens I have been hoping for, but never in a million years thought I'd get now!

On Christmas day we all slept in, and had a late brunch,

and then just had time for a walk before it got dark again. 

It was cold, about -18C/-0,4F, and the snow squeaked under our shoes.

Good thing Hilde Marie's suit is roomy :-)

We drove back home Sunday evening, as Sigve had his scheduled check-up in Haugesund Monday morning. The taxi picked him up at 8 am as usual. The blood tests were satisfactory, showing steady levels. His hemoglobin level was even up, and the platelets were steady, so the doctor was pleased. 

For the last week Sigve has started reducing the Sandimmun dosage, and has been told to be extra on the alert for signs of GVH (graft-versus-host) disease. The first signs could be skin rash or heaviness of breath. So far so good.

Last Monday the doctor decided that the visits to Stord Hospital for blood tests are no longer necessary, so now Sigve has Thursdays off. 

Today's sunrise, at 10.15 am,

and sunset, at 3.40 pm.

Christmas this year was special. In August we really didn't know if Sigve would see another Christmas. I never actually thought it, I assumed all would be well, you know, the power of positive thinking. But realistically, it could have gone either way.

So my gratitude today is for still having Sigve here, for every new day we get to spend together. New days can not be taken for granted!

Camera days

Today was a camera day. Actually a 245 picture day.  Of course, in the end they boiled down to about 100, and there are still some I need to delete, and I have become better at deleting. I really see that there is no point in saving 10 almost identical pictures. But the selection process takes time...

Anyway, Sigve went to Stord this morning for bloodtests, and before he left he took Isa out for a short walk, so I got up a little later. Right from my first glance out of the window, I kept my camera close by all day. The lake, that froze over a couple of weeks ago, is now also covered in snow, and this morning, in the soft light of sunrise, frost smoke was drifting over, making light, shadows and patterns  change all the time. It was so mesmerizing I kept running out on the deck, and from window to window to get the best angles and views.

Thursday visits to Stord hospital are nearly always quick as all they do is draw blood  for the tests, and then he comes back home. He never needs to talk to doctors there. The nurses are also getting better at dealing with Hicky, his Hickman catheter. In many cases Sigve has had to tell them what the procedure is. To their defense, Hickman catheters are not that common, but we know they have followed up patients wearing them before. It requires special, sterile treatment, and of course that means having all the equipment lined up before starting. Up to now there have been two nurses, one sterile, and one who could go and fetch whatever they had forgotten. The nurse today was quite proud about the fact that she coped with it on her own.

I had to run some errands, and since Sigve still has to avoid crowded places, I usually do them on my own. (I know, to say that Bømlo has crowded places is an overstatement, but there may be more that 5 people at the grocery store!) 

I finished just around sunset, and while driving home I saw that light and fog over the lake again, and I just couldn't resist it. I took a walk through the cemetery, finding motifs there too.

There is a path below the cemetery, along the lake, with a view to the other side, and with my new 200 mm lens that distance is no problem.

I like the effect of flash photography in the dark, illuminating the foreground details, and leaving the rest invisible.

The wrought iron gates in daylight when I arrived,

and in the dark as I left.

I am so grateful for my camera, my computer, my iphone and my ipod. I know, I am a total gadget freak, but they have become very important parts of my life, letting me record and document daily events, and enabling me to keep in touch with friends all over the world.

Update

Finally, I seem to be getting this post done. I've been working on it all week, but I tend to wander, instead of sit down and concentrate on finishing a project.

Last Tuesday was the day for Sigve's slightly overdue 3 month's check-up at Haukeland Hospital. He's already at day +117, time really does fly!

We drove up on Monday, via Stord Hospital for some extra blood tests that the doctor at Haugesund Hospital wanted. We didn't really see the point in that, as he would be taking the same ones, and more, the next day, but decided not to argue about it. Might as well get the most out of our tax money :-)

Before checking in at the Haukeland Hotel, we stopped by Brita and Ketil and spent a very nice evening with them. 

At the hotel we got a room that was exactly like the one we stayed in for almost 2 weeks in September. Walking over to the hospital, Sigve was able to compare the shape he was in then and now, and the progress has been very good.

Like in October, the check-up included extensive blood tests, a thorough physical examination, and this time also an EKG (electrocardiogram), a bone marrow test and a thorax x-ray. None of the results came through while we were there, but the doctor indicated that from what he observed, he did not expect any surprises. The next day he phoned Sigve with some results. His creatinine level (a compound that is produced by metabolism of creatine and excreted in the urine) is still too high, so he scheduled a fluids refill at Stord Hospital two days later (to help flush out the kidneys). Sigve also needs to pass more fluids through his system on a regular basis.

The bone marrow test showed that Gerd's stem cells have not completely taken over yet, and Sigve still has too many of his own cells left. Sandimmun, the medication he takes to prevent GVH (graft-versus-host disease), slows down the take-over process, to let the body gradually get used to the new cells. He's now so far into the process that it's considered safe to reduce the dosage of Sandimmun in order to speed up the take-over. As the new cells take over, his immune system will also be strengthened. As for now, he still needs to avoid crowds, and to wear a face mask in places where he could get close to anyone who may have a cold.

Sigve's hemoglobin content level has increased, and all other levels were satisfactory for this stage.

Sigve asked if he could start wearing contact lenses again, but the doctor wanted him to stick with glasses for the time being.

However, we were allowed to bring Isa home. That was such a lovely surprise, and we drove home via Tysnes to pick her up. She's obviously thrilled to be home, and loves to snuggle up on one of our laps, and we're thrilled to have her here.

Two best friends finally back together again.

Now I can feel how much I have missed her. In my efforts to stay positive, missing her was one of the feelings I chose not to feel, as that would have contributed to negativity. Using the Lightening Process I am able to stop undesired thoughts and thought patterns.

* * * * *

Our days go by more or less as they have. We have been sleeping in late, but this is changing now that Isa is home. She needs to be fed and walked, so at least one of us has to get up earlier than before. 

We've had a visit from a physiotherapist, and Sigve now has a training program that we both intend to follow. Maybe I'll finally get into shape too!

We try to get out and go for a walk every day too. Isa is a great motivator here.

Sigve's appetite is up and down, but mostly up. He has some attacks of nausea, and vomiting, maybe a couple of times a week. They come out of the blue, lasting only a few minutes, and then he feels fine again. There is no pattern, but sometimes it seems like exertion may play a part. Like today, both walking and exercising in one day may have been too much. He has told the doctor, but he doesn't seem to be concerned about it at all.

* * * * *

Backtracking a little, a couple of weeks ago we took off in our camper van for the first time since Sigve got out of hospital. Hilde Marie and Jon Helge wanted to go in their caravan, and asked us to come along. They found a winter open camping site north of Bergen, and we spent a long weekend there, leaving here on the Thursday.
We went for long walks, and shared some nice meals and quality time.

In our camper van.

This was right at the start of the cold spell, and we brought snow suits.

Frost had settled in some really cold humid areas.

Ice crystals had started growing on anything that was slightly moist, 

and I was in camera heaven :-)

* * * * *

Backtracking even more, November 5. was my birthday, and we expected Hilde Marie and Jon Helge over for dinner that evening. They had promised to cook venison for us.

As it turned out, so much happened on the farm that day, that when they managed to get over, it was too late for dinner, and I was informed that we might as well postpone it to Saturday evening. The decision was made very  casually, almost too casually I thought, and when I saw the amount of meat they brought I got the feeling that something more was planned.

We spent a nice evening together though, eating fruit salad.

Of course I had been asked what I wanted for my birthday, and I had one big wish: a new lens for my camera. I had a 18-55 mm, and really wanted a 18-200 mm. With all the hints I had been dropping I sort of knew I would get it, and I did :-)

So on Saturday morning Hilde Marie and I went shopping, and when we got back I was greeted by  our very dear friends Brita & Ketil and Berit & Einar. Janet & Helge arrived  a little later. We all go back to our college days, and have been great friends ever since. Big surprise! I was also happy to see our newest   friends, Britt & Geir, Jon Helge’s parents.

We’ve had Jon Helge’s venison before, and it is always soooo good, but that evening he outdid himself. The meat was marinated and cooked to perfection, and so tender it just melted. You could cut it with a fork! The gravy had seasoning to die for. There were also potatoes cooked in cream and cheese, and stewed mushrooms with bacon and onions, and mixed vegetables. All so yummy!

My surprise guests:

Brita and Ketil.

Berit and Einar.

Janet and Helge.

Britt and Geir.

I have never had a surprise party before and I loved it! 

* * * * *

Sigve has no fat left to keep him warm; he weighs the same now as he did in Junior High. Since the temperature dropped to below 0C/32F he has been wearing long woolen undies, which he would never even have considered before. Do you remember the old Middle Ages themed Monty Python movie "Robin Hood: Men in tights" ("Helter i strømpebukser")? Do you see any similarities? So now Gandhi is out :-)

* * * * *

Our deep and life long gratitude keeps going to Sigve's sister Gerd, who donated the stem cells, and gave him the opportunity of continued life. Without this gift, his life expectancy would have been approx. 2 years, at the most. There are not enough words in the world to express this gratitude.

Every day we are also grateful for, and to, all you wonderful people who have followed our journey. As we keep learning more about the power of prayer, the effect of positive energy and thinking, and how powerfully the mind can influence the body, we are reminded of how greatly you have influenced the  healing process. And for the rest of our lives we will think of you all with gratitude.

Our gratitude also includes the new little one that is getting ready to arrive in February :-)