Into the thick of it – again

One year in and I’m still healthy.

I had my one-year control last week and have gotten the thumbs up all the wat round.

I had eight appointments that day, saw four doctors, two lab techs, gave nine veils of blood and had my teeth cleaned.  In addition to state of my teeth and the usual bone marrow samples, they also checked my lungs, eyes, bone density, and mental state.

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The only thing wrong with me was a slight vitamin D deficiency for which I am being treated (eating fish and taking an over-the-counter supplement)

Besides that and some dry skin, I’m good. I’m glad to not have the weight of the year control looming over me anymore. I’m glad to be cancer free and that much closer to being normal again.

May and I are now leaving the ice and snow behind, going on a much anticipated three week Caribbean adventure.

Thanks for your prayers and support.  I’m outta here.

Nothing of interest to report.

I know I said I wouldn’t make a new post unless something interesting happened, but certain parties have been asking about an update.

The year is almost over and its been nearly a year since my transplant.  I’m doing fine. The past few months have had their share of infections, reactions and side effects but nothing to write about. I’m still cancer free and on track. I’ve started taking my vaccines and am almost done taking immune suppressants.  Once, I’m finished the suppressants, I should be able to start weening off the last of the medicines and get back to normal.

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Next spring I’ll be starting a new blog aimed at people who have gone through leukemia and or a bone marrow transplant.  It will mostly cover my experiences and reactions to everything I’ve been through.  Hopefully it will answer some of the questions I had when I curious about what I was going through and what awaited me. I was searching for answers but found very few answers.

I will do one more post after the results of my one year control come through in February before I put this blog to bed.

Today was my six month control and everything is good.  No more GVHD, blood levels are good. My blood pressure was high because of the immune suppressants so they put me on blood pressure medicine. Now I feel like an old man, but hopefully it will help.

My doctor told me that she could she I had “steroid face”.  That’s not a compliment. But she reduced the steroids so hopefully I my face will go back to normal in the next few weeks.

She also told me I need to start with bloodletting. Yepp, apparently we still do that in 2023.  I’m pretty sure that bloodletting is what ultimately killed George Washington.  When you’ve had as many blood transfusions as I have your body builds up an unhealthy iron reserve that needs to be let out.

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I will start back to work twenty percent in a few weeks. I’m looking forward to that.

I probably won’t update the blog for a while unless something dramatic happens, so no news is good news.

Nothing to report beyond that. Things are good and getting back to normal. Thanks for praying!

I’m sorry it’s been a while since my last update.  Life is good but uneventful.  Here’s the lowdown.

Medical stuff first… I’m still feeling good and doing well. No outward signs of the GVHD anymore so I am looking like my old self again (emphasis on the old part). I get checked up every week and things keep improving.  I’m slowly being weened off the steroids and when I’m off them I’ll start coming off the immune suppressants.  Most of my blood values are starting to come into the “normal” range – others will probably have to wait another six-twelve months.

I have my six month control (after the transplant) in early August and I am counting on further confirmation that I am healthy and on track.  If all goes well at the six month check up, I will start back at work 20% in mid August.  Something my brain needs.

In other news…

It’s been a glorious summer here in Norway so far. My youngest graduated from high school. Three kids through school without major issues.  All three of my kids are working hard this summer. They have seven different jobs between the three of them.  I’m a proud father.

We had a wonderful visit from one of my oldest and dearest friends – Jim and his wife Bridget. We had such a great time. We hung out, caught up, laughed, saw the sights, took a road trip and a cruise on the fjords.  It’s a real blessing to have friends like them and be able to spend time together – even when those times are few and far between.

My longsuffering wife enjoyed a sun and lavender filled week in Northern Macedonia with her sister and a group of Norwegian women.  After everything she’s been through with me the past few years this is the first of many well deserved vacations for this wonderful woman.

That about covers it.  I stay out of the sun and continue to eat myself healthy (kind of like Jobba the Hutt – but healthier) I praise God for His goodness and blessings and how well things are going for me. Keep praying and I’ll let you know how the six month control goes.  Thanks for reading – love to you all!

I must say that things have greatly improved since my update earlier last week. After ten days of steroids and creams the rash is pretty much gone and I look normal, unless you look too closely.  I’ve responded so well that they are already reducing the amount of steroids they are giving me. Praise God for that.

I have been to three different hospitals over four days this week.   Two check ups, blood tests and FINALLY, the surgery to remove my chest catheter which was two months overdue coming out. As my wife said, “it’s a fulltime job being sick”.  Next week will be slightly better, three hospitals over three days, but no surgery.

I still need to stay out of the sun and be careful in the heat – not an easy task in Norway these days as we face unusually warm weather and dryness this week.  But we have a shady deck and a nice living room so I’m getting along well and have a nice excuse not to have to go out and do yard work – I have kids for that.

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That’s the update for now. Thanks for sticking with me.  Hopefully its smooth sailing for the next few months. I’ll keep you posted.

Good news first- The fungal infection is pretty much cleared up.

The new news is that I officially have Graft Versus Host disease (GVHD).  Like everything else with this mess the symptoms vary greatly from person to person – some people get a little rash, some people die. I’m somewhere in the middle. My body has broken out in a rash – everywhere – I’m turning purple with red spots, front and back, top to toe.  I feel like Grimace. It started Saturday and spread like wildfire.

In addition, my mouth is full of sores and lesions – especially on my tongue.  For four days I’ve been eating smashed bananas (sorry Amie) and soup because they are the only things I can get down. Good diet but a miserable way to live.

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Tjuvstart på Black Friday-salget: Sjekk hvilke utrolige kupp du gjør nå" />

Tjuvstart på Black Friday-salget: Sjekk hvilke utrolige kupp du gjør nå

I went to the hospital today and was there most of the day getting looked at, tested, measured and biopsied. I left with two new appointments and two new creams to rub on me.  If you’ve lost count, that is now five creams and five medicines.

This wasn’t completely unexpected. I’ve kind of been on edge waiting for it for a while.  It’s nothing out of the ordinary for someone in my position.  It just sucks.  But it isn’t without its silver lining. Getting GVHD can act as a vaccine against Leukemia.  Along with my skin and tongue the body recognizes the Leukemia cells as an enemy and attacks them – just like we want it to.

While I sat there in the ER for hours on end and watched people come and go, I saw that there were a lot of people who had it worse than me. Crying families, screaming babies, injuries and more filed through.  My purple complexion and flaming tongue will pass and I haven’t had to shed a tear yet – but I have noticed that my smile and cheerful disposition are starting to crack. I know that everything is moving in the right direction – I would just like a break from the side effects, infections and secondary sicknesses.  I’m getting weary.

Keep me in your prayers. I appreciate it.

Nearly three weeks after my three month control check up, I finally got the official word that everything is OK.  I had my suspsions but it’s nice to have it confirmed.  My CAT scan was clean, the Epstein Barr virus number was next to nothing and all the other tests looked good.

Because I like to keep things intersting, while I was waiting for the results I developed some sort of rash.  A rash is one of the things they (the doctors) tell you to look out for because it can be a sign of Graft Versus Host disease (GVHD). That is when your body rejects the donor cells. (not good but treatable) The itch started last week, but because of all the Norwegian holidays last week, it wasn’t until this week that I could tell the Dr and it wasn’t until today that I could get an appointment to have it checked out.  Luckily the rash wasn’t spreading while I was waiting, just itching and irritering.  When I showed the Dr my rash he quickly identified a fungal infection and not GVHD.  I was much relieved.

Not that a fungal infection is something to be excited about but I’m guessing it’s better than the Graft Versus Host disease.  A little cream and some pills and I should be fine and itch free in a week.  Praise God.

I would like to give a big Thank You to my friend Jan-Martijn in the Netherlands for helping me solve my hair issues.  What a blessing!

That’s the news from here.  No GVHD, hair issues are in check and spring has finally sprung here in Norway.

I had my three month check up today (at the big hospital in Oslo).  It involved nine vials of blood, a bone marrow test, an ECG, a urine sample, a thorough examination, two questionnaires, an interview and an X-ray of my lungs, and the only concrete answer I came home with is that I gained a pound.

It will take several days for the answers to all the tests to come back, but based on the questionnaires, examination and interview, things seem to be looking pretty good.  They’ve lowered my daily pill intake from thirteen to seven, and I’m being weened off the immune suppressant that was giving me trouble earlier in my recovery.  Hopefully I’ll be medicine free by mid-summer.

So hopefully the whole lymph node / lymphoma episode is behind us and its smooth sailing from here.  I can start taking vaccinations this fall and May and I got the green light for our big romantic adventure next winter.  That’s the carrot that is getting this ass to pull the wagon.

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Tjuvstart på Black Friday-salget: Sjekk hvilke utrolige kupp du gjør nå

In other news- The hair on my head is out of control.  When I say head, i mean my whole head, not just the top part.  On top my hair had grown back as thick as it ever was (which was pretty thick) but it’s all grey and white now.  I’m going to need to adapt to that.  My eye brows are not only growing long and thick but are slowly trying to come together in the middle to give me a unibrow. It takes quite an effort to keep the brow in check.  I have so much hair on my ears that I could double for the wolf man and the hair in my nose is so thick I can hardly breath.  The 5 o’clock shadow that used to take me a week to grow now appears the next morning after an evening shave.

The doctor says that at least the ear, nose and eye brows should go back to normal as I stop taking some of the medicines I’m on.  I was relieved to hear that, because I have never spent as much time in front of the mirror plucking and pruning as I have the past month.  I doubt I could keep it up forever and I would end up eventually looking like a Florida skunk ape.

Not sure why it’s all just happening on my head.  My legs are silky smooth.

All in all, it’s good to be me.  I had a much better (positive) feeling walking out of the doctors office today than I did on Friday.  I can see that things are moving forward toward the ultimate goal of me being completely healthy.  I feel good right now and have no reason to suspect that anything is wrong.  If things change as the test results come in, I’ll update it here. In the meantime please keep praying for and encouraging me.  It works and I am very grateful.  Thank you all.

I thought I would come with a quick update to let you all know that I think I’m doing OK.

I have my last Lymphoma treatment this Friday and then my three month control check up is on Monday (the 8th). I have no reason to suspect that anything is wrong, but then I have never suspected that there was anything wrong with me.  I’m not good at this game.  I’ll write another update next week when I know more.

The thing I am struggling with most right now is the weather.  When I woke up yesterday – on May 1st – it was 36 degrees (2 C) and snowing. That was about the 10th snow we’ve had since winter should have ended – over a month ago. They aren’t all big snows, and yesterday’s snowfall was gone by midday (thanks to all the rain we got) – but it weighs heavy on a tired old body – this optimist is losing faith in Norwegian spring, its just a seven month winter followed by a few months of constant daylight and then it’s back to school, shorter days and chilly nights again.  I don’t tackle the cold as well as I used too.

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Tjuvstart på Black Friday-salget: Sjekk hvilke utrolige kupp du gjør nå

Enough complaining. Life is good. I feel good and am getting healthier. God is good.

“We expect everyone to experience some complications” – That’s what the doctors say to us transplant patients.

Now it’s my turn. Up until now things have been going great. Today at my weekly check up I found out that I have Epstein Barr virus. You probably have it too, most people do. But I’m having a flare up.  Specifically, the lymph nodes in my head and neck and swollen and sore. If left untreated it could turn into lymphoma (lymph node cancer) – and we don’t want that.

So tomorrow I get admitted back in to the hospital for a CT scan and a bunch of tests. Then treatments start on Friday – (some sort of infusions). Hopefully in a few weeks, I’ll be as good as new.  – I won’t (shouldn’t) be in the hospital for the next few weeks, hopefully just a day.

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It’s not really anything serious, just a complication and an inconvenience on my road to getting better.

So, I’m still in the thick of it. Please keep praying for me and encouraging me. I’ll get through this.