It's MARIA here!

Hiiii!  It's me writing a blog again! 

It feels like forever ago since I actually wrote a blog myself and I am excited to finally do one myself again! Huge thanks to Ryan for stepping up and updating all of you through the last few months of craziness when I have not had the energy/capacity for anything but EVERYTHING I have been going through. I guess that was plenty to get through on it's own though. 

I just wanted to start by thanking everyone for following along on our WILD journey and for the amazing support we have been getting! We literally wouldn't be here without any of you! So thank you!! 

It's hard to know where to start, but I'm going to try to keep it kinda short and simple for now :) 

Since I was put into coma, things have been so much better and more stable! It feels weird to say, but I have had so many more days of improvements, stability and smiles! It obviously started at zero the day I woke up from coma and I have had to go through a lot of work to get where I am today, but seeing and feeling improvements every single day has been motivating and helped me keep pushing through. Even little improvements have counted as big steps on the way. 

When I woke up from coma on April 2nd after my surgery, it was literally the weirdest thing ever! The first thing I heard was the nurses telling me that I was at Ullevål (hospital in Noway) and I had been a sleep for three days. That's all they said and I just started panicking! I was so confused, shocked and scared all at ones! I couldn't remember anything! Even from few days before being put into coma, so all this was HUGE to me! I felt so lost! Thankfully, Ryan, my parents and Ryan's parents came to see me within the first hour of me waking up, which was very comforting. They were able to explain things to me and tell me that things are better and they were able to help me and stop the bleeding. All great news, but the trauma and fear was still there! At first I couldn't speak, I was having a hard time breathing (even with help of oxygen) and I could barely move either. It was easy to start thinking the worst. What if I am paralyzed? Will I ever be the same again? Will I be able to walk on my own? What is next? Those were just some of the questions that popped into my head in the beginning. But again, thankfully, I showed improvements quickly even on day two from waking up, which helped me stay positive and optimistic for recovery. 

The last blog Ryan wrote kinda covered the first part of my recovery from the coma so I am not going to repeat that, but I just wanted to share some of the feelings I had in the beginning. My recovery was incredible and like Ryan said, it really was a MIRACLE! I felt improvements literally every single hour the first week, both physically and mentally. I was walking without oxygen within few days and after that I was improving my endurance a lot every single day. 

Due to everything that happened, liquid sunshine round 3 was delayed a little bit. This was due to me needing to build up strength and endurance to tackle the next round. Nine days after waking up from coma, I started! Which I think was pretty fast just because so much had gone on! But I am also very glad that we started as soon as possible to get it over with! 

Round 3 was the toughest round for me mentally! I felt ready going in! Like super ready to tackle it and crush it! But with all the trauma I had gone through right before, it got a little tough for me. Due to my incredible improvements in the beginning after the coma, I think I didn't always realize what I was actually going though, I was so focused on getting better. Which is great, but I think I didn't start processing any of the trauma until after I started liquid sunshine round 3. I had more time on my hands and things started getting to me. I was very tense, I was soooo scared of being nauseous (very, very normal during treatment, but I was so scared to vomit (also very normal) due to the history of vomiting blood and everything that had followed that last time), I had a very hard time allowing myself to rest, I felt weak and tired and yes, I could keep going on... but I'll spare you for now. I know all this is very normal and understandable, but this is something I needed time to work through after round 3. I did a lot of meditation (relaxing and breathing exercises), listened to relaxing music, did mental practice with positive thinking and things like that. Step my step, I was able to get stronger and start believe in my strength again. Ryan helped me enormously during this time too!! I needed to change my mindset on couple of things and one of them was the feeling of being "strong". I have always felt like being strong is to push through and work hard. But I was feeling extremely exhausted the first week and it made me feel "weak". So I had to work on seeing my strength from a different point of view. I had to believe that I am also showing strength  by resting my body and giving it what it needs to recover. Step by step things got a lot better and I have learned so much about myself! It's all a learning process and I am proud to say that I am both mentally and physically stronger now :) 

Ryan and I stayed at Lillehammer hospital until last Sunday (total of 4 weeks straight in the hospital) for monitoring. We are so incredibly thankful for the support from our local hospital through this time. They have been amazing to us and allowing us to feel safe and well taken care of. We were able to stay there until I (we) had built up enough strength and courage to go home and stay there without any worries. In the beginning, we would go home for about 2 hours during the day and then each day we would slowly increase the time until we felt 100% comfortable going home and spend the night there. We thought the time we had at the hospital was great and the perfect amount we needed before going home safely.

The monitoring that I received in the beginning is mostly blood work and vitals (blood pressure, heart rate, and oxygen saturation). This was something the doctors in Oslo requested I would do for at least the first week just to be safe and make sure things are going well. This monitoring was also used to make sure there weren't any new bleedings or things along those lines. This was also very comforting to us, knowing that they were taking my situation seriously and monitoring what was needed. Thankfully my blood percentage stayed stable and good throughout the whole time. It is very normal however that the blood percentage drops few days after treatment and if it goes below a certain value (my doctors are using 8 for me personally), they give me blood to bump it up again. This is not concerning and like I said, it's expected when receiving liquid sunshine. On day three after treatment, I had to receive two bags of blood. Again, thanks to the monitoring I was reciting at Lillehammer hospital, it was super easy and I got it the same day, which bumped my blood percentage back to stable and good levels and they have stayed there since :) Yay! The thought of receiving blood felt very weird for me in the beginning and I wasn't sure how to feel about it, but oh my goodness, how thankful I am for it!! It can not only help someone like me, but it can SAVE lives!! So I just wanted to use the opportunity and encourage anyone that can/is willing to donate blood, to do so :) It's super easy and I PROMISE you will never regret it. Another thing that they were monitoring, is my immune system (white blood cells etc.), which is also very normal that drops between treatments, but that usually happens around half-way between rounds. Which it did and it actually dropped down to 0.7 (pretty much no immune system LOL), but for that there is nothing to do but be extremely careful around people and germs in general (to prevent getting an infection) and wait for the numbers to go up again. It stayed low for about 2-3 days, but showed improvements everyday and then bumped up pretty quickly after that. So all that was great :) 

Overall, round 3 of liquid sunshine went really WELL! I have been healthy and improving every single day. Little bumps like I want to call them, but overall, we have been very thankful for the positive outcome. Being tired (exhausted), having delayed trauma from what happened prior to the round and some mental blocks has been the main side effects. The medication has been well balanced and I have been able to be pretty functional with little to no physical pain and nausea, which has been amazing! Just like before, Ryan and I spend a lot of time walking, trying to stay moving and keeping ourselves busy with little projects (even within the hospital). We have been coloring, making bracelets, reading, watching A LOT of Friends (yes that's by far our favorite show ever and we might know every single scene), and just trying to spend quality time together (it's not always easy with everything going on).

A little shoutout to my parents and Ryans parents for all the help they have done for us the last month! They have not only been there for us, put smiles on our faces during very tough times, but also helped us out so much with our dogs! Knowing that our dogs are taken good care of and that they are happy always makes our hearts happy. It definitely made the extra long stay at the hospital easier on us. 

Lastly, I just wanted to end on a funny note! While I was in coma, they have to give you A LOT of fluids (like a lot) and then I stayed on quite a bit of fluids for the first days after I woke up as well, for various reasons (nutrition etc). Then since I started liquid sunshine pretty shortly after that, my body just kept getting "loaded" with fluids and MAN I gained so much weight! It was quite hilarious! It was all normal due to the situation and what I had gone through, but my body had so much fluid. If I slept on one side more than the other, you could just see that the fluid/swelling was all on that side of my body. On my "worst" day I could barely see out my eyes and my face was HUGE! I can laugh about it now and I hope you guys can too ;) And yes! I had to sleep in those very attractive compression stockings for over a week! Anyway! A week after round three I was back to "normal" and had lost 10kg (22 pounds) of just fluids! I will attach a picture for reference! ;)

Now, believe it or not, it's almost time for round 4!!! Feels like this time between rounds has gone by so fast. I am starting on Tuesday. Round 4/6 and we are ready for it! I am feeling strong and healthy and we have a good feeling that things are going well. On Monday I will have new blood tests, new scans and a meeting with the doctors and hear how things are coming along, but with how good I have been doing lately, we have strong belief things are stable. So please cross all your fingers and toes for Monday and all the prayers are much appreciated like always :) 

Ryan and I are on a tiny little "vacation" now for the weekend, recharging and enjoying quality time together before next round. We have wanted do this since I got the diagnosis, but had to cancel or change our plans multiple times for obvious reasons. So yeah, we are just extremely thankful for the opportunity to do a little get away and staying somewhere that's not a hospital. It's about the little things right now and we try to be very aware of the positive things we can find throughout everything we are going through right now. There is always somethings to smile about and be thankful for, even during the toughest days. 

Anyway, that's it for now! Ones again, thanks for following along, thanks for all the support and prayers! We feel it from all over the world and it really means the world to us. We are in this together and we will keep fighting till the end! As of right now, if everything goes as planned (miracles have happened and we believe they will keep coming our way), I should be done with liquid sunshine in middle/late June. As most of you know, we had planned (for the second time) to have our wedding celebration this summer on July 7th. Due to everything, we have decided ones again to cancel it. This is probably not a big surprise for most of you, but we wanted to make sure that everyone know and that we are transparent with everyone. Unfortunately having a wedding celebration is not in our cards this year and not something we can prioritize and plan at this time. It's sad to say (type), but we have to focus on my health and recovery for now. In addition, moving to another country, trying to get settled and everything else that has come with this big transition for us is our priority right now. At this time we have not decided or even thought about when the celebration will possibly happen, but we promise that we will definitely let everyone know way ahead a time :) For now, we are just thankful that we are happily married and that we have each other! 

Last but not least, I have been using a quote that I would LOVE for everyone to use and share! Through all this, I have been trying to stay positive, smile and be happy and this quote has helped me with that :) So if you could SPREAD SMILES to the world with me and for me that would make me so happy! 

Now to the pictures:) Hope you enjoyed the blog! 

This is during my physical therapy session on day 1 of liquid sunshine round 3. I have and will always love being active and I was very happy to be able to do a little activity even while being hooked up to my lovely pole and liquid sunshine! 

That same day Ryan and I got VISITORS to the hospital! Our amazing friends Li and Erik flew all the way from Stockholm, Sweden to see us! How amazing is that?! It made our hearts so happy and we can't wait to see them again soon :) 

This is how we decorate our hospital room lately! We find it very important to try to make it feel like home as much as possible. We love having the pictures to look at. 

We got a small patio furniture for our balcony and we couldn't be happier with it! Since then we have spent so much time sitting out there enjoying the sun and fresh air! Anyone that knows us well, knows how we just love being outside. 

Our little babies!! It always feels so nice to snuggle them and spend time with them between hospital stays! They are so sweet and protective of me. 

Happy belated EASTER! Ryan and I got to celebrate easter in Lillehammer hospital this time, but we made the best of it and even had traditional Icelandic easter eggs. 

Probably my favorite picture ever! My grandpa and I are matching now ;) He has been bald since he was a teenager and I am sure he wasn't expecting me to be the first one to match him, but hey! I think we look great!! haha! 

Few pictures of little outings and visitors the last couple of weeks! Always nice to get out in the sun and enjoy quality time with family :) Thankful for the weather we have been getting too! Spring came early this year! 

Ryan's parents leaving with he train after being with us for a month! So thankful for the time we had together! Can't wait for you guys to come back soon

 My parents in law surprised me with this AMAZING bike last week! I was having lunch with my parents and grandpa and this is what waited for me when I got home! I was absolutely speechless and so, so thankful! I have already been able to do few short loops with Ryan and it's so much fun! This bike will be such a great part of my recovery :) 

Big family dinner at my parents house!! 

With everything going on, we have been trying EVERYTHING we can to do things right to increase our chances of success and miracles! We have been doing a lot of research on nutrition and other things that are important and can be helpful alongside of liquid sunshine to help my body recover and fight off the cancer. Ryan has been extremely supportive and very active with it and we feel like ever since we put more effort into this, I have been doing so much better in so many ways. Few things that we have altered: increased intake of certain vitamins, we are eating more plant based and organic, eating a lot more fruit, veggies, seeds, nuts and things like that. We have done a lot of research on what type of foods can help my body heal naturally and what foods to avoid for example to help my red and white blood cells through treatment, and decrease intestinal inflammation (which I was having quite a bit of). If now is not the time to try everything we can to do things right, then I am not sure when it is. And seeing and feeling improvements already feels amazing :) My appetite has also been really good, which has helped me build up a lot of strength! I haven't had this good of appetite since September last year (and that's no joke). So yay for that!! 

 

Lastly! My father in law and I have matching overalls now! hah! and I love it so much!! I have wanted a pair for a while and he made it happen ;) You can expect seeing me wearing those around quite a bit that's for sure!

Thanks again for everything! Hope everyone is having an amazing weekend! 

SPREAD SMILES

- Maria