One of the hardest things to do in this battle has been to completely trust God. I know he is in control, I know what he has promised me but sometimes it is so hard to not come with my own opinions, ideas and wishes. But I am trying to let go. I know his plans are best because they are his.
On the bright side
God is going to work his plan regardless of what I think or mean and we will win in the end.
I know I said I would try to keep this blog positive and somewhat humorous but as you see sometimes that leads to a dead stop. It has been nothing funny or fun about the past few days. Not to get into to many details but here are a few of the things I have been through. Sepsis by e coli, super low blood pressure, pneumoniae, diarrhoea, shallow breath and a host of other things I cant remember tught know. I came to ICU Sunday morning and has been here since. There has been countless infusions, blood products, new medicine, tests and several doctors and nurses. Dude, there were so many infusions going on, I needed 2 more ports in my veins. But I woke up this morning feeling like my old self. I am not out of the woods yet but definitely heading that direction.
Not much is going on. I get to go home during the days and do nothing. I just don’t have any energy to do much and I am also supposed to stay kind of isolated. My white blood cells are no longer countable, which means 0 immune system.
On the bright side
I am glas i am going through this during summer when the sun is shining and there is plenty of sun light. It would have been so sad to go through this in the dark.
This is May again. Not because Brian is sick, just because there isn´t much happening. He is home from hospital during the days and I drive him there at night. We are half way waiting for the expected fever to come. So far it hasn´t and we are taking every day out of the hospital as a special blessing.
I realized when I was in the hospital this morning that I am starting to get used to cancer. I remember the first few days, before we even new what was wrong and Brian stayed at the unit for cancer and blood diseases. I thought it was so scary and un-settling, being at at that unit and thinking that it was going to be our new “home-away-from-home” for the foreseeable future. Just passing the sign that said “Cancer unit” on the way in was surreal and very sad.
But today, as I was passing the signs on the way in to Brian’s unit and room, I realized it wasn’t scary anymore. Maybe it is because I have done it so many times (like exposure therapy) or I have started to realize that cancer doesn’t automatically mean pain, misery and death. My father passed away of cancer when I was in my early twenties and I also had other friends that have died from this too, so that was much of my experiences going into this. But now, I more feel that this unit is someplace that we have to be for now, it is getting somehow familiar and nothing I associate with “scare” or “fear” anymore. I hope that come mid-September, we dont have to be here anymore, other than for planned check-ups. If it doesn’t go as hoped, we will cross whatever bridge whenever we come to one.
i think much of the reason why it isn’t scary is 1) all the prayers that have been and are being prayed. Thank you, every one of you. And 2) the people working at the units. Both at the National and Regional hospital, the doctors and nurses are all, besides from being very competent, so friendly and empathetic.
So instead of the bright side, I would add a thankful side.
I am so thankful for all the people working at the units Brian’s stays at. They take such good care of both of us, it is really making a difference making this ride manageable.
I made it home yesterday. Today I had to check in at the regional hospital (the first one I was in, where I got my diagnosis) at noon for some routine tests. I expected to go in, say Hello, take my tests and head home again but the doctor had other plans. It looks like I´ll be registered as a patient but allowed to go home during the days as long as I stay healthy and spends the nights at the hospital. Not my plan but this is actually reasonable consider that I don’t have any working immune system.
I´ve also been thinking about all these little hick ups along my time line the past few days and my deep fear of what is coming up. They aren´t real problems, they are my issues trying to control the details. But God told me that the details aren’t mine to control, they are His. I need to let go and let things happen in His time. Assuring but stull scary, I need to trust God as much now as I did in the beginning, no worrying about my plan just be part of his plan.
On the bright side
I still get to come and see my family every day, as long as I stay healthy.
It wasn’t easy but I did finally make it home today.
Yesterday the doctor said I could go home. This morning the second doctor wasn’t so sure. My Potassium levels had sunk, and she wasn’t sure it was safe. After a lot of back and forth the doctor landed on a compromise we could all live with. As long as I had people at home to take care of me, I could go. I get to go home but I need to go to the regional hospital and register (becoming their patient) incase anything big or bad happens.
So that was set. Then came the hard part. Jakob was going to pick me up at two and drive me home. Except my nurse overslept and I got my last chemo treatment started really late. Then I had to get some blood, which they set the drip too slow for so it was taking 3 hours instead of 1 hour for the blood. I had to call Jakob and delay his departure. Once everything was finished, they decided I needed my valves changed and they were of course stuck adding more time to my departure. Once the valves were cleaned and certified all that was left to do pick up meds and the transfer papers and be on my way. Well, guess what, the printer was broke and they couldn’t print out the papers. I was supposed to finished at one, it was now pressing two-thirty. They finally got the papers printed and I was on my way.
At Home- At home my support team is bare bones – on call is more like it. A potential corona scare is keeping May away for the night, but hopefully she’ll be able to go to the hospital with me tomorrow. The rest of my support team is either at work or out with friends. One is just in the neighborhood, so she is on call in case I need anything.
On the bright side
I am home for now and that is better than sitting in any hospital.
I am finally out of the nausea, diarrhea infested cesspool of the latest chemo treatment. It is nothing I did my self, God fished me out and brought me back to the land of the living. Not everything is quit right but way better than it was before.
Yesterday I finally started feeling like a real person again and today I found out that the doctors want to send me home tomorrow afternoon when my last treatment is finished. I don´t know why, I don’t care why, I am just glad to go.
I am not sure what God is up to, but I sure not am complaining about this part of it.
Poor May has been running back and forth between Oslo and Moss, I am glad she gets a break now and I will be able to see her every day.
We won´t be able to have any visits any time soon. This is not a “fattening up” trip home, this is a “building my immune system” trip home.
Going home tomorrow will close the part of this adventure that we have known before hand. The rest is a big, unanswered mystery which scares me. I know what ever happens I am in God´s hands but having no idea is pretty scary. Please pray for me and I´ll keep you updated as we figure things out.
On the bright side
I am going home tomorrow. No more temperature taking, no more hospital food, no more hospital smells, no more restless nights being connected and disconnected to various medicines and test.
It´s May again.
And when it is me writing, it is usually because Brian is having a hard time. I know the doctors tried to prepare us for this was going to be a very tough treatment but it is harder than we could imagine. His whole body is struggling to handle the chemo. He is fighting so hard, his face and expressions look different. He is shaking and have cramps all over, even when he sleeps. I hope at least the sleeps give him some comfort and short breaks. It is not about “handling this one day at a time”, this is more “handling it minutes at a time”.
We love him so much. I thank him every day for not giving up and going through with this so he can come home to us again. There is no doubt in my mind that he will beat this.
Please keep him and us in your prayers.
On the bright side
This round of chemo has an end to it and every minute brings him closer. He is a real trooper and is not giving up!
This is May writing again.
As the titles says; not much is going on these days. Brian has fever and nausea so his appetite is low. He has low energy and wants to take naps. I visit 1 hour every other day and miss him greatly in my every day life.
He just wants us to pray for him and make sure you know he is praying for you who read this as well.
On the bright side
Nothing superbad is going on. The fever, nausea and lack of energy is expected with this amount of poison running through his veins (yes, I was thinking of that song when I wrote this 😉 ). The nurses and doctors take very good care of him.
Last night while I was not sleeping, Baltimore Oriole Trey Mancini came in second place in the annual Home Run Derby. Last year Trey was diagnosed with colon cancer and beat it.
When the long night was over, we crawled out of bed, ate breakfast, and drove back to the hospital in Oslo. I knew it was going to be a big day of tests ending in start of my second round of chemo. We sent May home, so she didn’t have to suffer through the battery of tests and waiting.
I took my tests, including a covid test which kept me locked in my room for most of the day. After waiting for several hours, the doctor came in and told me that the first round had gone exceptionally well. We knew that from before, but a week on when they checked the results things are even better. The cancer cells in my marrow are down to 1.5%, the doctors were hoping for below 5%. The other things they check were almost back to normal levels after a week of being home and marathon eating (still didn’t gain any weight) Those normal levels will soon be wiped out by round two, but its good to know that my body is responding well to both the treatment and the recovery.
In the afternoon a dermatologist came by to look at my moles (this is part of a larger project before I even got cancer) He went over me with his loupe and couldn’t find anything suspicious. I am sure that this news delighted May as my mole have been a major area of worry for her over the years.
I found out about seven-thirty that I did not have covid and was then free to wander the halls. The only other news is that with this new treatment I need to start taking eye drops four times a day. Its not that easy but luckily the nurses are willing to set them in for me.
On the bright side
I’m so glad I have so many people on my side praying for me or cheering me on. It sure makes this journey less lonely.
