I Have a Diagnosis!

Hey everyone, it's been a week since my last post and a lot has happened since then. 

WARNING: The information you're about to read if going to be heavy and sensitive. 

On January 25th, I had a few missed calls from the hospital which seemed a little odd and urgent. I decided to give them a call back and my doctor asked if I could come into the hospital for a visit the same day. They also told me it was ok for me to bring one other person with me. It seemed a little weird but Ryan and I were going to go anyways. On the way there, I asked Ryan what he had thought and he felt that since it seemed so odd, urgent and they said he could come, it couldn't have been good news. Especially since they wouldn't let him see me the entire time I was in the hospital. 

When we got to the hospital, my doctor was very, very nice and sweet to us. He sat us down and explained everything to us in english and very clearly so Ryan and I could understand. He had told us that I had a diagnosis of Primary Splenic Angiosarcoma . A type of cancer that has never been diagnosed before in Iceland. He explained to us that a team of cancer doctors all reviewed my case and assured us that it was a correct diagnosis. He also told us that this type of cancer is a rare and an extremely aggressive type of cancer. That it is only found in .2 of every million people around the world. That being said, there is not much information out there for doctors to know how to treat it. However, a doctor here in Iceland has seen this type of cancer before so they were able to diagnose it. Unfortunately they don't have the knowledge and equipment to treat me here. So my doctor said that the best place to get any type of treatment would be on the West Coast in the US. He had told us that chemo therapy would be the best type of treatment to help cure my type of cancer. He had suggested that we do treatment regardless because he is not 100% certain that the cancer was only in my spleen. He is afraid that it could have metastasized (spread) without him or any other doctors knowing. The type of cancer I have is in my blood but it is not a type of blood cancer, meaning that doctors can't detect this in my blood or on blood tests until it's really bad. But if my type of cancer decides to spread at any moment, it can and will do quickly. But we are hoping and praying that it doesn't do that. He also told us that I needed to have more energy, have a low carb diet and work on building up strength for the fight I have ahead of me. He also told us that the chances of me going back to school in February are very low because I needed to put all appointments and treatments first before anything else. My doctor also told us that with chemo, it can likely cause infertility. If you know Ryan and I, we have always looked forward to becoming parents and this news was very scary to us. He had told us that we would need to speak with a fertility clinic to freeze my eggs so that we could still have kids later. He said there would be no complications after chemo to carry a baby which was nice to hear. 

At the end of the appointment I was feeling so many different emotions. Part of me was sad because I have been diagnosed with cancer, but the other part of me was happy because I finally have a diagnosis and now we can do something for me to get better. Hearing the news that I wouldn't likely go back to school was really devastating to me because I so badly want to finish my degree so Ryan and I can start our lives, move to Norway and start a family. By delaying school, that pushes everything back. On top of that, hearing that I have a high risk of infertility because of treatment seemed all overwhelming. (All this was huge and so many things are turned upside down & yes.. I am crying while writing all of this.) 

After we left the hospital, Ryan and I were still in very much shock with the news. When we got home, we shared the news with my parents and my aunt. They were all just as sad as us but we all comforted each other knowing that we will do whatever we need to in order to win this battle. For the most part, we accepted it and tried our best to stay positive. The next days following we shared the news with Ryan's parents and some of our closest people. The first several times I shared the news, that I have cancer, Ryan and I would just break down. We still couldn't believe the diagnosis. However, over time, repeating the words "I have cancer" got easier and easier and I felt better and better each time I shared the news with someone. I felt like I was just trying to accept it and felt ready to start treatment right away. 

We then created a mental game plan. It looked something like this: 

⏹ Fly to the US (& be reunited with our dogs) 

⏹ Go to a fertility clinic and freeze eggs (sounds simple) 

⏹ Book an appointment to do Chemo here and there 

⏹ 6 months after treatment we could start our lives and try for a baby with help. 

Turns out our Game Plan was shot down on Friday, January 28th when we met with my doctor again. This meeting was one Ryan and I were not expecting. By this appointment, my parents, Ryan and I had written down a list of questions that we wanted to ask him so we can get a more clear idea of what to expect. Based off our questions, it was clear to him that we truly didn't understand the severity of the situation. He stressed to us that I will NOT be going back to school and that every single day matters from here on out. We had asked him for a referral letter to a fertility clinic so we could start that process but it was not as easy as we thought. He told us that it could take months to get eggs out and freeze them. Which he then told us that we most likely do not have time for due to how aggressive my cancer is. (So now it seems like we won't be able to have our own kids if I have to start treatment right away and if I become infertile. This was very hard news. But we know my health comes first.) 

He then gave us a better idea of how long treatment can last (which is about a minimum of 6 months) and stressed that this will not be a quick fix. Before we left, Ryan wanted to ask him a very serious question that everyone was thinking but no one wanted to ask. Ryan offered if I wanted to leave the room for it, but I wanted to stay because I had already knew by the feeling in my gut what he was going to ask and I had already known the answer. (I did research at night when he was sleeping. I knew he wouldn't have let me googled it but I knew to only look at scientific related articles... don't worry I'm smarter then just using google for advice). Ryan asked that if we don't get treatment right away for some reason, how long do I have to live? The doctor said that if I don't get treatment right away OR if my body doesn't react to the treatment, I'm looking at 3-6 months to live.... (It's still so shocking to even think about) 

Due to this cancer being so rare, there is no straight line for what kind of treatment can help. However, my doctor here in Iceland reassured us that the worse the cancer is (which mine is) the more likely it will react to chemo therapy. So now we are working our hardest to find someone with the capability and knowledge to help us find what type of treatment could help. It's not going to be easy, but we WILL do everything we can to keep my future as bright as possible. 

I want you all to know it is so hard to write about this, it's so hard to talk about and it's so hard to believe that this is true. I have had lots of anxiety about writing this and after finding out this kind of news, I've had even more anxiety because trying to figure out where to start is so overwhelming. Thankfully I have Ryan and my dad here to help me out with calling doctors, insurance, talking with my school, etc. 

After my doctor shared that news with us, we were slapped in the face with reality. We truly don't have any time to waste. We hurried home and shared the news with my parents and that evening we started calling lots of doctors in the US. We were advised by my doctor here and others to look at both at OHSU in Portland, Oregon and at the Mayo Clinic in Rochester, MN. Thankfully my doctor here has an Icelandic friend who is also a cancer doctor at the Mayo Clinic in Rochester and sent him all my information and is helping us expedite the process. OHSU on the other hand... has been a nightmare. The ladies at the office told us that she wouldn't be able to get me in to see a doctor until probably a couple of months... she was also rude, passive and did not take my case seriously. She then told me that they "just" changed the rules and said they couldn't talk to me because I wasn't in Oregon. The ladies exact words were "sure, sure, ok, yeah, sure. We'll get to you when we can." (Ryan was furious! This lady clearly didn't seem to care or take us seriously) Thankfully, the Mayo Clinic is going much better. I was able to transfer all my medical documents from Iceland and from Oregon. The staff was also super amazing and even made us laugh on the phone. They were able to assign me an Angiosarcoma specialist the same day and promised us that we would get in touch with a doctor by Monday!!!  

Having this happen was super amazing going into the weekend. We all felt more relaxed going into the weekend knowing that something good will happen going into the next week. Especially after the rude and mean lady from OHSU, we needed a sense of hope and we got it after talking to the staff from the Mayo Clinic. Later that night, we had another family meeting (one of many that week) and we decided that my dad would stay with us in Iceland until we leave for the US. My parents were supposed to leave the next morning to Norway, which my mom did, but due to everything going on and the horrible news, they decided that my dad would stay to support and help us. Ryan and I are flying to the US on Thursday (February 3rd.), which is the first day the surgeons would allow me to travel after the surgery. I have an appointment with the surgeon on February 2nd, to make sure I am ready for the travel (especially my incision). 

Ryan, my family and I have decided that we will go ANYWHERE I can get treatment fast. Whether that be at OHSU in Oregon, a cancer clinic in Washington, California, Minnesota, Norway, Sweden, etc. Anywhere I can get help, we are moving there. So Ryan had to quit his job in California to be with me through it all. With how serious this is, we didn't want to waste any time apart in case things were to go wrong. I want Ryan by my side through it all. My parents and siblings will likely come to the US or wherever to help me and Ryan along the way throughout treatment and that makes me really happy as well. 

Now more than ever we are seeking financial support. With Ryan being forced to take off work to be with me, we are worried financially on top of everything else. The doctors also assured us that treatment is very expensive and so is medication. We have a long road ahead of us and we know we wouldn't be able to do any of this without any of you. The support we have been getting so far has been absolutely unbelievable and we can't thank you guys enough. Here is our Go Fund Me account if you want/can/are able to help us out during extremely challenging times. Here are our Venmo accounts as well... @RyanToney or @Maria-Gudmundsdottir

Thank you all so much for all your messages, your prayers, your kind words and loving and supporting us. We have no idea what the future holds but we are trying to stay positive, strong and we are very hopeful for things to work out with the Mayo Clinic. 

Since we got these horrible news on Friday, Ryan, my dad and I decided that we would completely isolate until Ryan and I fly to the US. I cannot risk getting COVID before that because that would possibly delay our travel about 2 weeks, which according to doctors we do not have time for. So we are treating it as a life or death situation. So now we are primarily focusing on me staying safe and healthy, building myself up physically and mentally for what is about to come. Due to the isolation, we have had to become very creative with our time at home, so we have been doing some arts and crafts, including making ceramics. The last two days, I have also been able to see some of my best friends in Iceland. Yes, they had to take Covid tests prior,  we all wore masks, met outside AND kept 6 feet (2 m) distance. It's a different get together than what I would have wanted, but wow! it still did so much for my little heart right now. My family has also been amazingly supportive and been dropping off food for us, projects and other things to help us stay fed and entertained inside the apartment we are staying at. We are so thankful for everyone around us helping out and loving on us. 

Physically, I am still improving everyday and we are taking that as a good sign and hope going forward. I have been able to increase my walking distance, eat more and I have also stopped taking almost all the medication I was on after surgery. Yay! I am in minimal pain right now, but I am still moving slowly (getting in and out of bed, standing up from a chair and things like that is still a challenge). My appetite is still improving as well and I am trying to eat as I can to gain weight again (I have lost a lot of weight). My doctor had suggested to us in addition to a low carb diet that I would drink Kombucha and make sure to take Vitamin D, so I am doing that now as well :) 

Sorry the blog was so long, sorry the news isn't what you were hoping for. But thank you all for being by my side through all this. Let's end this on a positive note. Here are some pictures from the last few days. Have a great day! 

Maria & Ryan ♡♡