In all (un)fairness....

Life is unfair. It is unfair that I was born in Norway. It is unfair that I have a safe and comfortable home, nice clothes to keep me warm, more than enough to eat, a great family, great friends, and I have been healthy most of my life. 

A long row of unfairness. A long row of Grand Prizes. 

When Geir Espen started having health problems at age 12, I thought how unfair that was to him. But what if we compare his situation to that of disease ridden, starving children in other parts of the world, then what is fair? At least he had access to all the free medical care he needed. 

Then Sigve, at 55, got leukemia, and went through a very dramatic treatment. He had never been sick at all before, so was it fair that his time had come? Again, all the free medical help he needed was there for him.

At age 29, Geir Espen died. I felt the unfairness. 

And now Sigve has to go through this dramatic treatment all over again, and I'm really feeling how unfair that is to him. 

Again I sit here and watch the man I love not being able to eat or speak properly because his mouth hurts so badly. He can barely drink water. He has lost control of bodily functions, and has to wear a diaper. From time to time when his body shakes from the rising temperature, he wraps up under two duvets, and doses off. 

So what is fair, and what is unfair? I guess it's all relative.

And in between, when the temperature drops, Sigve feels better. Fortunately he has his iPad, and he writes his poetry, and when you see his activity on Facebook, you wouldn't think there was anything wrong with him at all. 

Later this evening a nurse came in and asked if Sigve wanted some pain killers for his mouth, he just had to ask. I told her that she was dealing with someone who never used to take pain killers before in his life, and we hadn't even thought of asking. Anyway, she brought him a pill, and 15 minutes later, his mouth actually felt better, and his speech was clearer. Yeay!

I'm grateful for nurses who show initiative :-)

Thursday and Friday

On Thursday Sigve's mouth soreness increased to the level where all he could eat was soup, and today not even that, so now he's on liquid IV nutrition. When he closes his lips and then opens them again, it's like ripping up velcro, so a nurse gave him some vaseline to put on and inside his lips, and that has helped. Somehow he still manages to swallow pills though, but drinking water stings. He also keeps rinsing with the Caphosol. Speaking is obviously painful too, and it's hard to make out what he's saying on the phone. 

On Thursday, uncontrollable diarrhea set in, so now the time has come for diapers. 

Sigve's temperature has been going up and down, and today it went back up to over 39C/102F, so lots of blood tests were done again. Every time it spikes to over 39C, they do blood cultures, one from each arm, and one from Hicky.

I have been home since Wednesday evening, and I'm going back to Bergen tomorrow midday. I had a bit of diarrhea too on Thursday, and that meant I had to stay away from the hospital for 48 hours, so I just settled in here, and enjoyed my alone time.

I'm grateful for good night's sleeps every night.

Last day of chemo.

Sigve was having the best day since he came in. He woke up early, got up, showered and did some exercises. His appetite is a bit down, due to increasing mouth soreness, but a nurse gave him a local anesthesia diluted in cream to relieve the soreness during eating. Food is important in order to keep his strength up. Then around 2 pm his temperature started rising, and he got frost rushes, so he went back to bed, and I went to pick up Hilde Marie and Leon.  

When we got back he was ok again, and we spent a lovely afternoon and evening together. Hilde Marie's friend Randi came to visit too. Very nice, it's been a while since we have seen her. 

This evening I drove back to Tysnes for 1 or 2 nights. If everything still goes well with Sigve, I'll be here for 2 nights. I feel, and know that taking care of myself is important, but it's not easy. Staying away from the hospital, however hard it is, is also self care. My mind knows this. I am trying to teach it to my heart.

Now we wait for when he has to be in isolation.

Gratitude for a home I can call my own :-)

Flashbacks

At the end of "our" corridor there's is a panoramic view of Bergen city. But if you don't look that far, you look right down on the children's hospital. In the summer of 1995 we spent two weeks there with Geir Espen, after he was diagnosed first with Addison and then with diabetes. He was just 2 weeks short of turning 13, and facing a lifetime of giving himself shots several times a day. We were all terrified, but in need of putting on a brave face and assuring him and ourselves that we'd get through this together. The following 17 years we went back for frequent check-ups, first to the children's clinic, and later to the regular clinic, and went through countless emergency hospital admissions.

I looked back at some of the blog posts I wrote 4 years ago, when Sigve was here for the stem cell transplant, and noticed that at one point I visited Geir Espen in the ICU at Stord hospital on my way back to Bergen to visit Sigve at Haukeland. We certainly have spent a lot of time in hospitals over the years.

Today has been quiet and peaceful. Sigve had a good night without any fever, but he keeps waking up because he needs to fill those bottles, so he doesn't get the deep restful kind of sleep. 

This afternoon they started the last dosage of chemo, and it is set to flow in over 24 hours. Today's visiting doctor estimated that he will need to go into isolation some time tomorrow or Wednesday. 

Sunday and Monday

Yesterday, Sunday, was a generally good day, after a strenuous night. During the night Sigve's temperature rose, and he got those frost rushes that really shake your body. The night nurse claimed she couldn't find any blankets or extra duvets, which of course is crap. He got a hot water bottle, that was it, and didn't help very much, and she went off duty without even telling anyone what Sigve needed. We complained about this to the day staff. When the day nurse came, she really took hold of the situation, got him his big woolen sweater, woolen socks and an extra thick duvet, and raised the temperature in the room. So when I got there, he was feeling a lot better. He had a big lunch, and then Hilde Marie and Leon came to visit too.

In the afternoon Hilde Marie and I put together a food list with food that we are convinced is the best diet for a cancer patient: no sugar, no gluten, lots of vegetables, pure protein sources, no prefabricated stuff, just to mention some, and it was accepted. It remains to be seen if they manage to follow it up. Regular hospital food complies with official dietary guidelines, and we don't really agree with all of them. 

So last night, in stead of sandwiches he got smoked salmon and scrambled eggs, yummy and healthy. 

Last night was a good one, no temperature, but with all the fluids Sigve receives, he wakes up every hour to fill a bottle. Frequently interrupted sleep gives reduced sleep quality. Then in the early hours of morning his temperature rose again, and he also had a very low blood count and platelet count so they gave him refills of both. All this made him very tired. When Hilde Marie, Leon and I arrived around noon, he was still asleep. We woke him up, got him to put on his hearing aids and glasses, and that increased contact with the world worked wonders. During the next hours his temp sank, and the rest of the day was good. 

Today's highlight for Sigve was when Leon, 

on his arm, smiled many big smiles at him.

These days Helmer can't visit; Sigve can't leave the room and children between 1 and 14 are not allowed into this ward, they are likely to bring contaminating diseases from kindergarden and school. This is hard on both of them, they have that very special bond.

An important part of Sigve's treatment is rinsing his mouth with Caphosol 4 times a day to prevent fungus infections in the mouth cavity from the chemo. This worked very well last time, he had very little mouth soreness. Hoping for the same result now.

Hangman is busy these days. Sigve gets fluids most of the time, and antibiotics, and today there was the blood and platelet refills,  and then the chemo from 4 pm. Hicky has 3 valves, and all of them were in use a lot today.  

I'm grateful for the enormous resources that our society spends on trying to save Sigve's life. 

Chemo day 4

Sigve didn't sleep very well last night, his temperature went up again, and he was freezing a lot. Eventually blankets, hot water bottles and rising the temperature in the room helped, but when I got there around noon, he was still very tired. So I stayed for a little while, and then set off to explore an alternative lifestyle fair. 

I took part in a session of sound therapy, which was awesome, and relaxing. Listening to tibetan gongs and sound bowls, didgeridoo, tiny bells, drums, chanting, conks and a lot more was like bathing in sound. As our bodies consist of 78% water, it has an amazing ability to receive vibrations. Like acupuncture that stimulates the body's energy flow, vibrations can affect the body circulation, loosen up tension and blockages, and help relieve stress. I felt really refreshed afterwards. 

Back at the hospital Sigve was feeling a lot better, he ate well and his temp was back to normal. So it looks like the new antibiotic is doing it's job. And still no side effects from the chemo. We like :-)

Later Brita, Ketil and Kari Anne came to visit, and we got a phone call from Paul, Jorge and some of the gang who had spent the day in Barcelona, on their Mediterranean cruise, the one that we had planned to be on too. 

Still looking good, and smiling :-)

I'm grateful for distractions :-)

Some commotion

Just after I arrived at the hospital today, Sigve started running a fever. He had been warned that an infection might be on the way as his CRP (C-reactive protein, an infection indicator) had risen from 43 yesterday to 58 today. 

So when his temperature quickly rose to 39C/102F, there was a bit of a commotion. His doctor and nurses came in. A biochemist (with two students in tow) turned up for blood culture tests, one from each arm. Apparently the clue is to test blood from different areas of his body to better pick up on where the infection is. Afterwards a nurse drew more blood from Hicky. There is always a danger of infection in Hicky's entry or exit wound, so she did a bacteria test from around the exit hole, although it looks peaceful at the moment. 

Sigve is already on preventive antibiotics, but now they're being changed to a more broad spectered kind. Due to the fever he is now in isolation.

This photo shows Hicky's exit wound. The entry point is under the bandage on his neck. Hicky is used for everything that needs to be administered intravenously, and for blood tests. 

A little later two doctors came in and said that one of the patients in the room he was in the first two nights had tested positive for whooping cough, so Sigve had to be tested too, and he will be given preventive treatment. 

Sigve's appetite is still good, and he's feeling ok, but more tired. Otherwise things are going mostly by the book.

* * * * * 

Receiving a leukemia diagnosis and having surgery 

is not exactly the way you want to celebrate a 59th birthday

(which was on Tuesday).

However, this is: