Not doing sit-ups anytime soon

Pfff.... it was a bit of a week, last week. Learned a lot about hospital (non-)communication and about drains. Learned about how to add protein to my diet and learned to build great pillow forts in my own bed. 

Last Monday I got a call from a newby hospital assistant that my drainage procedure was scheduled for Wednesday instead of Tuesday and "neeeh, I don´t believe you´ll get anastaesia, I am sure you´ll be fine". which made me look forward even more to it all. Ah well, already been through a bit, how bad could this be. 

By the time Wednesday morning came around, I felt ready and strong to get this whole thing over and done with. For this time anyway, as it might just be that this ascitis might come back. So blood tests and all done, I got installed in my single room on the 10th floor. 

And then the clock turned 13.00 and I got to meet Dimitri the drain man. He unwrapped a mega needle (really, MEGA!) and upon looking at my shocked expression told me he´d only be using the top 3 cm for the sedation. Why the heck make this needle so long then? I was glad to get the anastaesia but let me tell you that these top 3 cm sure hurt. It is kind of a strange sensation to have a tube stuck into your abdomen to drain fluid, but boy was it necessary. 

After 24 hours, they had drained 7 liters! 

With that fluid being gone, my stomach and all the rest of my intestines started their party to find their right spot again and that party was good for them, but slightly painful for me. Let me tell you: I won´t be doing sit-ups anytime soon! 

With plenty of painkillers in my bag, I got to go home on Thursday. 

So what´s next? 
- I had my MRI on Friday and hope to get the results either tomorrow or the day after. When all is well, the next step is going on with the research program and get on with the new treatment,
- If all is not well, we need to figure out the fastest way to get radiation treatment under way in one of the University hospitals in Oslo. As soon as that is fixed (whatever is wrong in my neck), we can get under way with the new treatment. 

In the meantime:
- building pillow fortresses in my bed to find the most comfortable position and sleep like a rock
- finding things both my stomach and me feel like eating (sounds easier than it is)
- getting the house and garden ready for spring

Should you have any questions with regards to what´s gonna happen or what has happened with regards to the treatment, don´t hesitate to ask. I´ll do my best to answer to the best of my abilities. 

Feels a bit like Treatment Adventure part 4378 is about to start! 

A bit of a situation

Don´t really know where to start actually. Well, I guess this will be one of these all-over-the-place blogs, don´t say I didn´t warn you. 

I have been on chemo therapy for the good part of the last 2 years. Different types of chemo, one better tolerable than the other. I felt I was doing alright with the last chemo (Eribulin for those of you wondering). Not so many side effects and I could pretty much carry on doing what I liked to be doing. 

Until about 3 weeks ago. That´s when I had the last dose of Eribulin and shortly after I began to notice an irritating feeling in my stomach. Not so much pain but more a continuous press on my inner organs. That led to a lack of appetite, which led to me being nauseous, which led to me almost fainting in the super market. And in the meantime the irritating feeling had grown from irritating to straight up pain. After almost 3 nights with no sleep because of the inner war raging in my tummy I figured it was time to experience yet another first: go the the ER on a Sunday morning. 

We are sooo lucky to have the most fantastic support crew around us. A very good friend of ours drove me to the ER this Sunday and well, I have been in the hospital up til yesterday morning (2 nights and 2,5 days... felt much longer tho). Loads of tests and scans and of course also a Corona test. And then some more tests and answering questions that I had answered just 15 minutes ago with another doc already. 

The verdict was part "pffff... ok, that´s good" and part "well, I guess it´s no surprise but I was so much hoping that wouldn´t happen just yet". 

The first bit was that my intestines had gone on strike. Partly because of the chemo (one of the side effects) and maybe a bit of stress. Once the intestines have decided to stop working, it sort of goes down hill from there. Will spare you the details, but let me tell you that I am in awe of the person that invented laxatives. Strong laxatives. 

And then the other part. The part where I (and with me many more people) was hoping to be able to postpone that until at least another couple of years. 
Besides my unruly intestines, it showed on the latest scans that there are new cancer tumors in the abdomen. The liver tumors have diminished, it seems pretty quiet on the liver front now, but apparently the tumor cells got a bit over enthusiastic and have now expanded business into my abdomen. This brings with it that a fluid is produced that presses on my inner organs which causes a very unpleasant pressy feeling and pain. Not good. 

My first concern was: oooooh please let me still be able to partake in the research study with new and innovative treatment methods! I mean if that wouldn´t be the case... I don´t even wanna go there. But luckily (yes, there is ALWAYS a silver lining!) it is the case that I can still take part in the study! Not only take part but be the cause for the early kick off of the study! 

As I am kinda on the clock with getting treatment asap, and the study hasn´t officially started yet, there is a lot going on now with all the involved study people (decision makers) to get the ball rolling. Without the study, I would have to go and find a place myself (plus fund it myself) to get the immuno therapy I now need. 

So right now I am eagerly awaiting a phone call from my Norwegian oncologist to get me the practical details of how and where and when this whole new treatment adventure is going to start. In the meantime I am enjoying lots of ice and ice cold apple juice and a cheese sandwich now and then. Oh and plenty of morfine. I have now come over to the other side. I really do need painkillers to be able to manage what´s going on in my body now. Morfine and apple juice and just doing my stuff here at the house are keeping me sane. And are keeping my mind from wondering "what if..." 

Talk about what if: these past 3 days where a perfect dress rehearsal to see if we had all the practical details for Mik in place. A lot of thought had gone in to making sure Mik is well taken care of when I can´t be around and it seems that it worked fine. Mik has done an amazing job and is doing fine and I so love the support squad around us. 

I am a very lucky lady with so many loving and helpful friends around me! 

Someday

... we can travel again. I so long for that day. Nearly every day Mik and me play GeoGuesser just to have a bit of that feeling of travelling again. I guess more people are experiencing that feeling in these strange pandemic days.

Anyway, yes: I have been a bit quieter than usual on my social media the past weeks. It´s just that I totally didn´t feel like sharing or didn´t know how to share my feelings of not wanting to be here right now but wanting to be out and about. Without having a care in the world. No worries about when the next CT scan is planned or what the onco will say about the results of all the tests. Plus I am so fed up with having chemo every single week. 

Up until a week or 2 ago I felt I could all take it in my stride. Just get on with it and it´ll be alright. I don´t really know what happened but I sort of lost that feeling a bit. Not that I go around being all depressed and not happy with the world. It´s definitely not that. But there´s this heavy feeling in my stomach (yes also caused by the chemo) that I wanna be out there and do stuff and make grand memories. I feel like I am very much on the clock and this pandemic is stopping me from making these grand memories that Mik and I had thought out. 

I know, it´ll all be better. Someday. But I feel I am running out of time waiting for someday. 

Even though I might have been quiet, stuff has been happening here. Remember that I got this new freelance gig for Momento Education? Well, they´re not called Momento anymore, but they now go under the name FRAM Education. This is news hot from the press and the website and all will be rolled out over the next few weeks. But what this means is that what used to be Momento Norway is now an independent company in Norway called FRAM Education. I have had some online meetings with them, but that´s about it. I guess when the new school year starts plus when there will be exchange students in this particular region, the work will pick up. 

Plus I got this short but sort of happy (though very short) call from my onco. Remember that I had this liver biopsy done in Oslo early February? Well, even though the IMPRESS study is not underway yet, the IMPRESS research team already did their thing with researching my biopt and it might just be that I fall within that narrow margin of 5% that qualifies for immune therapy. No certainties yet and there is still further screening that needs to be done, but it seems a small step towards a new treatment! I know, I have got loads of practical questions regarding this too, but the onco didn´t know anything more as it all depends on when the research study will actually kick off. 

Stuff is underway, stuff will start happening and I just need to take care of myself and the fam and practise patience. 

Patience, right. As if... 

Here´s to warmer weather, less pandemic and more someday! 

Plus 1

This time it is not about my cancer, my treatment or how we are coping these days. 

This time it is a blog about how incredibly grateful I am. I know, that is sort of on repeat... I am really grateful on a daily basis. But heck, I am really grateful to have found yet another awesome company to work for! 

Don´t get me wrong. 50 Degrees North is still very much highest up on my list of absolute favourite companies to work for. And as soon as this whole pandemic business is, well, better, I am sure 50 Degrees North will be able to welcome loads of new guests on our fantastic trips. And they better count me in when the action starts again as I am ready to be back as their operations coordinator! 

In the meantime, I have been fortunate enough to come across Momento Eduction. They were looking for local coordinators for their foreign exchange students. On a freelance basis. 1 job + 1 job = a very happy JJ!

After a great Teams job interview with the Momento program manager last week, I got the call today that they would like to offer me the job! I guess it comes as no surprise that I happily accepted. 

What it entails to be a local coordinator?
Well, basically it means a lot of chatting and making sure everyone is happy. And if they are not happy, do your best to make sure they will be happy again. Momento has local coordinators in different regions in Norway, hence the local. These coordinators are the contact people, the go-to people for the exchange students in that area as well as the host families. As more and more 16 and 17 year olds would like to experience the wonders and adventures of Norway and its culture, Momento (we!) is always looking for new host families. It is also the task of the local coordinator to find even more suitable host families for the new Momento exchange students. 

My new job adventure will start with kick start meetings and getting to know each other (all digitally of course) and the procedures over the next couple of weeks. 

I really am very excited about this new adventure! I guess I better brush up on my Japanese and Italian! 

Ciao for now!