Into the thick of it – again

Today is the day that they take the tests and see how well I responded to the chemotherapy. It includes the regular blood tests and another bone marrow sample. Once they’ve looked at everything, they can make a better judgement on what the next step will be. (Hopefully it will be going home for a while to regain my strength.) Until then we wait.

I am still overwhelmed by the amount of people who are still reaching out and taking care of us as a family.  We are almost a month into this adventure and the encouragement, prayers, support, and food keep pouring in.  We have a core group of people who visit, feed, encourage and lift us up and beyond them we have an army of people surrounding us who are praying, sending encouragement and lifting us up to God every day.  And I bet that there is are even more people out there praying for us that we don’t even know about.

God is there in the big stuff and in the little stuff. When the days are long and believe me the days can be very long when you sit in your hospital room with absolutely nothing to do, I sense that God is there.  We don’t have long deep conversations because we don’t need to. I know He is right there, and He knows exactly what kind of comfort or encouragement I need.  He is always right where I need Him right when I need him there.

Annonsørinnhold

Snart morsdag og valentines: 25% på parfyme og deodoranter

On the bright side

Despite not doing much of anything most days, and the world’s most boring (bland) menu, I have managed to maintain my weight.  They don’t want me losing weight here, so I think maintaining is a pretty major achievement considering.

I’m not sure if it’s because I spend the majority of my days doing absolutely nothing or if its writer’s block but I’ve got nothing today.

I had a nice dinner with May, but beyond that there is nothing of note.

I think I will take today off and hopefully I’ll have something worth reading tomorrow.  Love you all!

Not much happened today.  At least not you’d be interested in hearing about. I was allowed to leave the hospital grounds for 90 minutes today but had to follow these rules; I couldn’t interact with other people and I wasn’t allowed in direct sunlight. These are rules I’d been trying to live by for 40 years already, so I was set.

Those rules really set you up for one thing, so May drove to Burger King and we got some burgers, then drove to a shady spot in a near by neighborhood.  It was probably the sunniest day I can remember, but nestled in that neighborhood under some big tree, we found a little slice of paradise. The breeze blew through the car, birds hopped around in the bushes and it was a nice relaxing time with my beautiful wife. We wrapped up the afternoon with an ice cream before going back to the hospital.

Word on the street is that my kids are enjoying a normal summer and that brings me joy. And it seems that you yard is being cared for which I also like. Though May had a nasty run in with a seagull yesterday who tried to p¤@p her outside and later went in the kitchen and ate all the toppings off the pizza that was sitting on the kitchen table. 

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Gir glød og motvirker aldringstegn: Få unik rabattkode på innovativ LED-lysmaske

On the bright side

The whole day was a bright side.  Being with May outside, under the big tree.  Its was a nice afternoon.

I can’t believe that its already July.  Time flies… I woke up with a spring in my step this morning and hopped around, getting dressed, making my bed, reading I was half done my to do list by 7:30am. While taking my old pillowcases off I noticed I was shedding like a dog in summer. I checked the sheets and there were traces of my mane there as well.  I looked in the mirror and everything appeared as normal, for now. But I could easily pull chunks of hair out with no pain.

The rest of that the day went as usual with nurses in and out, various medicines and measurements given and taken, and naps being taken in anticipation May-Helen’s arrival that evening. 

May brought cheeseburgers and ice cream and we had a nice little date. After we ate, we went outside and sat in the fresh air.  I can’t go into direct sunlight or I will burst into flames but as long as I stay in the shadows, I’m fine.  Afterward we went back to my room and called the kids to have a head shaving party.  All the kids were on the video chat and watched and laughed and commented while May shaved my head.  It was as close to a family outing as we could get under the circumstances.

Annonsørinnhold

Husk morsdag på søndag: Si det med blomster💐❤️

It’s weird being bald. At least it is for a guy who has never been bald before. My head is cold, it feels like Velcro, it collects lint and since my hair was so thick that my scalp never saw the light of day, it’s special kind neon white.  I feel a little like when Darth Vader took his helmet off in Return of the Jedi. 

On the bright side

Apparently, I look OK bald.  I have only gotten positive messages back from the people who have seen pictures.  More Bruce Willis than Uncle Fester.

Half the guys my age are bald anyway so it’s not that big a deal.  And I know that when this is over, my hair should grow back again.

As you can imagine I’ve had a lot of down time around here. Plenty of time to observe and think.  I discovered that the noise coming from the ventilation was pressure related because it stopped as soon as the outer isolation door would open (but not the inner door). 

Another thing I found out is that God does things in His own time.  But He does do things. (I knew this from before but “knowing” it and experiencing it are different) I’d been struggling with a mysterious little nosebleed for two days. Not huge and certainly not anything I wasn’t used to. I’ve been the king of nosebleeds since about the second grade. They have always just sort of started whenever they wanted. I now how to hold head so it looks like nothing is going on and how to hold it so it looks like I got punched and needed to get out of class. I’ve grown up with bloody noses, but this one wouldn’t end. 

The doctors were starting to get worried and wanted to send me to another unit to see an ear, nose and throat specialist.  No thanks, I’ve seen enough of them other the years to know I never want to see another one.  So, I prayed. I prayed for a healing over my nose. I claimed a healing over my nose. And I kept praying and I felt like God said, “here you go”.

Annonsørinnhold

Snart morsdag og valentines: 25% på parfyme og deodoranter

But everything was still the same.  The huge blood clot was still in the sinus, every once in a while the run off would get coughed up (I never mentioned the coughing up of blood to doctors because few things send the world spinning like coughing up blood, but I knew what it was from years of experience)  and it still slowly leaked what I thought was blood through my nose every few minutes.  I wasn’t sure where my healing was, but I held on to it anyway. 

As the day went along, I started noticing things like, it wasn’t really blood coming out of my nose anymore but a watery form of something, and I stopped coughing up blood. (it was less coughing it up as clearing my throat with a good cough)  At some point (I will spare you the details blessed reader) I got rid of the mess in my sinus and after that nothing came out of my nose again.  About eight hours later and God’s healing was on full display. 

It came according to His design, not the way I expected when I asked for it. And so much of this journey had been like that. Trusting God.  I know he has me in His hand, I know He loves me. I know He only has good things for me. Yet it’s hard not to try and dictate things to Him through prayers and expectations.  I know that my way will never be as good as God’s way, yet I still try and maintain that control.  But I am learning to let go and let God do His awesome thing.  I should have plenty of opportunity to practice in the next few months.

On the bright side

As if that weren’t encouraging enough.  I had some sort of flat peaches today.  They were good and juicy, I love peaches. 

My fever induced morning started out like any other, I was leading my crew of spider-riding cowboy monkeys across a backdrop of 80s space videos games. We shot our lasers at everything and avoided getting eaten by monsters, crushed by asteroids and shot by spaceships. We rushed and raced but never seemed to get anywhere.  When I woke up, I had fever of 104 which explains my poor leadership (but I’m pretty sure cowboy monkeys and spiders are the easiest co-workers)

From there the day got worse until it finally got better. The doctors tried a new type of antibiotic and since they already knew I had a fever, they mixed in some paracetamol (Tylenol) and that’s when things got good.  The fever broke in a good a sweat and I suddenly had enough energy to sit up straight and interact.  The only crap thing was that May didn’t get to come yesterday, mostly be of an issue going on in Moss but also because of what was going on here at fever central. 

So, this day started that so dramatically (the 104 fever not the space monkeys) ended quite nicely.  I got had a restful afternoon.  Another interesting thing that seems to be happening is that my tastebuds are all screwed up.  My daughter made me chocolate chip cookies the other day and I finally got the chance to eat on the other day and it tasted bitter and burnt.  I check some other sources who confirmed that the cookies were indeed good.  So I tried some BBQ western style crunchy nuts and again they tased burnt.  I think anything sweet tastes burned right now. 

On the bright side

If this this my new future I may never struggle with dieting again as everything that has given me trouble is now off the table. I’m not really sure which way I want this to play out.

One bite at a time.

How does Brians wife deal with cancer?

Several of you have asked how I, May, is dealing with this. The answer is

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“One day at a time”.

If I get lost in the “what ifs” I find it easy to be discurraged and sad. Brian and I know we are dealing with cancer and there is no guaranties, the worst thing can happen. But we also know at this point, the doctors are doing everything they can to help Brian get healthy again, and they are going for a complete recovery. And if it comes back again, wich often happens with leukemia, they will threat him all over again. So I don´t find it helpfull at all to deal in the “what ifs”, for now I deal in “today”. And many days are somewhat good and peaceful. I mean, it is always there, but I don´t go around and am sad and crying all the time. I try to encourage our kids, Brian and myself to enjoy all the good times, laugh when it is something to laugh about and try and have a normal life whenever it is possible. I really hope our kids can enjoy summer, vacation and being with friends. And if sad times comes and when hard times are here, we deal with it then. One day at a time.

The last few days have been very hard on Brian, though, wich also makes them hard for me. Seeing him in such misary is painful. He has fever, no energy, low appetite and general not feeling good. The only thing I can do is to love him, hold his hand and try to encourage him as much as it is possible to encourage someone going through this.

And I pray. I pray like I have never prayed before and as much as I have ever prayed before. It helps. It calmes me down and I belive God has full control over what happens with Brian. Lots of friends and family have given Brian encouraging words and Bible-verses. The one is about Jesus needs the donkey to ride in to Jerusalem. In the same sentence Jesus promises he will return it quickly. So I am clinging to that word; Jesus is going to use Brian, but he will return him quickly. There is great hope and peace in that.

I would like to say a big Thank you! to all our friends and family who give us so much love, pray with us, encourage us and offer practical help. It really makes a huge difference in our lives, and I don´t have words to describe how much it means to us. We are humbly accepting it all, you guys helps us through this in ways you can not imagine. As I tried to describe it to our nice friend who brought over frech pizza rolls last night. It was a hard time at the hospital, and coming home, eating a roll was like getting a very nice hug.

It looks like that at some point in my treatment I am going to need a bone marrow transplant.  The doctor’s off looking in the international bone marrow register. And my kids and siblings will be tested to see if they are donors.

I’m running another fever but feel OK. Still need antibiotics. 

Pray for me. Pray that my fever breaks and that my immune system builds itself up strong again. Pray that my energy returns and that my appetite increases. Pray that I can continue to stay positive and see the little light points everywhere. Pray that I will be protected against infections and viruses while my body is in this vulnerable spot. Pray that I will be open to hearing God’s voice when He speaks to me.  Pray for strength and encouragement for my wife and kids. Pray that my body fixes itself the way it supposed to.  Pray they find a donor for me. Pray whatever God might be putting on your heart.

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Today I was tube free. No Chemo, no antibiotics, no blood, no water, no nothin’.  Beside that Not much else really happened. May and I took a nice walk and I actually went outside for the first time in over a week. Then came back to my room and talked until she had to leave. 

I thought I was back in control of my emotions but apparently not.  At some point in the afternoon I was reminded of a touching little story from someone’s Facebook post years ago. Its sent me to tears and then I finally got to see the Gordon Ramsey show where he fixes up Ellicott City, MD after the flood.  That’s about a fifteen-minute drive from my parents house.  Again with the water works.  I should check and see if I got chemo or hormones.

I suspect that this blog could get pretty dull if I keep filling it with the same mundane things that happen to me every day. So, I am trying to think of ways to keep us entertained, informed and inspired that are not dependent on whether I am hooked up to a machine or have a fever.

Annonsørinnhold

Husk morsdag på søndag: Si det med blomster💐❤️

On the bright side

The nectarines this year seem to be exceptionally sweet and juicy.  I love it.

Thank goodness there are no more toxins running through me. But the doctors say that now is when the tricky part starts.  The chemo has wiped out anything resembling an immune system that I had so all that old friendly bacteria that had been laying around helping me out the past forty plus years could at anytime rebel and try its hand at a coup. I’m not sure what I can do to help myself besides not introducing new germs and bacteria into my system. So I sit here, an arm’s length away from the nurses call button, ready to report any sign of mutiny.

In the same vein as the past two days, there is another topic that pops up. Something I’ve heard a lot recently is that it is allowed to complain. I know that it is, I’m actually pretty good at it.  But so far, on this adventure, I haven’t really had any reason to complain yet. Actually, up to this point I have been able to maintain an attitude of gratefulness.  So many things have gone right and quickly and been better than I had anticipated. That’s not to say its been a walk in the park, but nothing to complain about. Also, I feel if I start complaining already, I’ll be like the kids on a long road trip who start asking if we are there yet and saying they are bored before we’re even out of town.  I suspect that at some point I will get frustrated and cry out and ready to complain and lament.  And when I do it’s going to be good to know that my God has a sympathetic ear for me and lap to curl up in and be miserable.

On the bright side

Annonsørinnhold

Snart morsdag og valentines: 25% på parfyme og deodoranter

May snuck me in two cheeseburgers last night. Not that that they are not allowed but it somehow makes my otherwise dreary existence a little more exciting if I think she smuggled them in for me.