Enjoying life

I was wondering what to blog about today, as not much is happening, other than waiting. So I asked Sigve what he thinks about while lying in bed, ....waiting. 

His reply was, "I don't really think big deep thoughts; I do what I always do, enjoy life". Says the man who at that moment was waiting for a higher level pain relief medication for the intense mouth pain. 

I guess that says it all. 

Hanging out with Hangman.

Here is proof that Sigve is starting to lose hair:

Two weeks ago

Today

Apart from all that, it's coming down in buckets outside.

It's seriously autumn.

I am grateful for pain relief medications.

"The doctors..."

"The doctors" is a term I use a lot these days. The doctors are doing this, the doctors are saying that. When I say "The doctors", I get this diffuse vision in my head of a host of doctors hovering. Just hovering. Blank faces and white coats. Funny really.

Sigve's biggest, and really only (other than some diarrhea), discomfort is his mouth soreness. He can only just still swallow pills, but the water still stings. So he gets IV nutrition. Nurses keep asking him if he could try and eat something, but he can't bear the thought of even trying. They have increased the pain killer dosage, and that gives some relief.

Other than that he's had a refill of blood (2 bags), platelets and fluids with added minerals. 

Sigve's sister Gerd, who was his stem cell donor came to visit today, and we all spent a few lovely hours together.

I am grateful for family.

Isolation

Sigve's immune defense system has hit rock bottom, i.e. it is virtually non existent. So now he is in isolation. However, it's a different regime from last time since there is no stem cell transplant involved. It means we don't have to dress up in protective frocks, masks and gloves. We "just" have to be healthy. 

The high temperatures he had last week and earlier this week could either be caused by infections or it could be a chemo fever, which some people get. But the chemo course was over on Wednesday, so now it's almost certainly due to an infection. 

At the moment his temperature stays around 38,5C and the CRP is back up to around 260. His antibiotic was changed to a different type again yesterday. Since there are no countable leukocytes, there's no way to know where the infection is located. It's a matter of trying different kinds of antibiotics until there is a hit and something works. 

Since Sigve can't talk much, it's hard to have deep conversations, and anyway he often dozes off. So we mostly just sit there, with iPads or other things to occupy ourselves with. But sometimes we do talk, and our conversations include topics like "what a wonderful invention peeing in a bottle is", "I might need a new diaper" and "I just dosed off and had the weirdest dream, and when I woke up I heard voices". It certainly keeps us entertained.

I just spoke to Sigve on the phone to say good night. He sounded really good, and he said he felt good too, the best he's done in days. :-)

I am grateful for our solid and strong relationship ❤️

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:

Together

Sigve was given chemo from 4 pm yesterday afternoon to 10 am this morning, and then again from 4 pm today until 4 am tomorrow. He hasn't experienced any reactions to the chemo so far, no nausea, and he feels fine. 

So Hilde Marie, Helmer, Leon and Britt (Jon Helge's mom) came up from Tysnes today, and we all spent a lovely day together. Being together is our most important activity now. 

I'm so grateful for our family, immediate and extended :-)

A slap in the face and a shot in the back

Sigve has been diagnosed with cancer, again. This time it's called Acute Myelogenous Leukemia (AML). "The word "acute" in acute myelogenous leukemia denotes the disease's rapid progression. It's called myelogenous leukemia because it affects a group of white blood cells called the myeloid cells, which normally develop into the various types of mature blood cells, such as red blood cells, white blood cells and platelets." 

Rapid progression is the key word here. This cancer has developed over the last month or less because a month ago Sigve had his 4 year check-up including a bone marrow test, and nothing abnormal was found then. 

Sigve, Hilde Marie and I had a meeting with the doctor today, and were told that there is a treatment, which will be tried. It's a strong course of chemo, designed to kill off the cancer cells, knock out the bone marrow, and then let it rebuild itself, and if it works, all is well. There is a slight chance that this will work, otherwise there would be no point in even trying. But, and he stressed this, the chances of success are very slim. If unsuccessful, it's a matter of giving a milder, slightly life prolonging and palliative treatment for however many months it may take. 

Time is of the essence; he was transferred to Haukeland Hospital on Monday, tests done immediately, the diagnosis confirmed and Hicky, a Hickman catheter was surgically inserted on Tuesday, and treatment started Wednesday. 

A week of chemo, 18 hours pr day. Towards the end of the week his immune system will be so low that he will to go into isolation for 2-3 weeks. Infections will occur, and be treated and hopefully fought successfully. Only after that time will we know if the treatment has been successful.

I am grateful for an observant doctor at Stord Hospital who suspected that something was not right, and did the necessary tests. This condition enters the acute stage when the amount of immature blood cells are at 20%, Sigve is at 59%.

These are the hard facts. Turbulent times are ahead of us. We appreciate the love and care that we know will be coming from around the globe from so many dear friends.