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Hi Everyone!
As many of you know, my world has been turned upside down over the last few months. In September, I started experiencing a lot of pain and discomfort, which worsened over the following few months and seemingly had no cause. In December, I started seeing doctors in the US who diagnosed me with an enlarged spleen (over double the normal size) but came up short on an explanation. With no immediate solution, the US doctors suggested Ryan and I follow through on plans to visit family in Norway over Christmas during this difficult time. However, on our layover in Iceland during our return trip, I was too sick to continue traveling and was admitted to the hospital here in Iceland.
I spent nearly a month in the hospital and my life was a revolving door of testing! By this point I had seen specialists in the US, Norway, and Iceland and had done all kinds of imaging, blood testing, and biopsies of my bone marrow and tonsils-- none of which had given any clues as to what was going on. The doctors decided that removing my spleen was the only option left, and hoped that a biopsy post-surgery would give some answers.
On Friday January 25th, that answer came and I was diagnosed with Primary Splenic Angiosarcoma. This type of cancer is so rare that it has never been diagnosed in Iceland before and is only found in 0.2 per million people worldwide. It is also incredibly aggressive and has the ability to spread through my blood without detection. After several meetings with my doctors, we’ve gathered that there is not much known about this disease, including whether or not it has already started to spread.
That said, here are a few things we do know:
• I need to return to the US where there are a few doctors who specialize in Angiosarcomas
• Ryan and I need to be ready to go wherever they will accept my case so that I can receive treatment
• We have no time to waste and every day counts
• In the hopes of fulfilling our dream of having kids, I need to seek fertility care to freeze my eggs (we are still not sure if this is possible with the necessary timeline of treatment)
• A minimum of 6 months of chemo will be my treatment starting point
• Ryan had to quit his job to support me and lead the charge on finding me treatment and resources
• I sadly have to withdraw from my Doctorate in Physical Therapy for the semester to take on treatment
• There is no clear long-term treatment plan and we are still searching for answers to find the best path forward
The hardest news yet was hearing my doctor say that without successful treatment, he estimates a life expectancy of 3-6 months. As an otherwise completely healthy, active 28-year-old, these moments are impossible to wrap my head around. But as hard as it all is, I am ready to do everything I can to beat this.
Faced with these tough facts and many unknowns ahead, we are seeking financial support now more than ever. Currently, my insurance will hopefully cover many of the costs associated with treatment. But unfortunately, my coverage is tied to my status as a student and since I have to withdraw from school, I will lose my primary coverage mid-way through the minimum treatment period. We won't know until that time what coverage options will be available. On top of these medical bills, we will need to pay for housing wherever I end up receiving care. The loss of Ryan’s income as our primary provider makes it all the more difficult to access the highly specialized doctors, facilities, and medications that I need to win this battle.
In addition to financial support, if anyone in the medical community knows any doctors who specialize in Angiosarcomas, please let us know-- these connections are truly invaluable to us. We’re actively researching and reaching out to doctors who may be able to help with my case.
Above all else, we’re so grateful for the outpouring of support from everyone so far and we’re staying optimistic that I can start treatment soon! Thank you all so much for being by my side through all this.
If you want to stay updated on my journey, please check out my blog posts:
https://medicalmaria.blogspot.com
That said, here are a few things we do know:
• I need to return to the US where there are a few doctors who specialize in Angiosarcomas
• Ryan and I need to be ready to go wherever they will accept my case so that I can receive treatment
• We have no time to waste and every day counts
• In the hopes of fulfilling our dream of having kids, I need to seek fertility care to freeze my eggs (we are still not sure if this is possible with the necessary timeline of treatment)
• A minimum of 6 months of chemo will be my treatment starting point
• Ryan had to quit his job to support me and lead the charge on finding me treatment and resources
• I sadly have to withdraw from my Doctorate in Physical Therapy for the semester to take on treatment
• There is no clear long-term treatment plan and we are still searching for answers to find the best path forward
The hardest news yet was hearing my doctor say that without successful treatment, he estimates a life expectancy of 3-6 months. As an otherwise completely healthy, active 28-year-old, these moments are impossible to wrap my head around. But as hard as it all is, I am ready to do everything I can to beat this.
Faced with these tough facts and many unknowns ahead, we are seeking financial support now more than ever. Currently, my insurance will hopefully cover many of the costs associated with treatment. But unfortunately, my coverage is tied to my status as a student and since I have to withdraw from school, I will lose my primary coverage mid-way through the minimum treatment period. We won't know until that time what coverage options will be available. On top of these medical bills, we will need to pay for housing wherever I end up receiving care. The loss of Ryan’s income as our primary provider makes it all the more difficult to access the highly specialized doctors, facilities, and medications that I need to win this battle.
In addition to financial support, if anyone in the medical community knows any doctors who specialize in Angiosarcomas, please let us know-- these connections are truly invaluable to us. We’re actively researching and reaching out to doctors who may be able to help with my case.
Above all else, we’re so grateful for the outpouring of support from everyone so far and we’re staying optimistic that I can start treatment soon! Thank you all so much for being by my side through all this.
If you want to stay updated on my journey, please check out my blog posts:
https://medicalmaria.blogspot.com
Thank you :)
Organizer
Maria Gudmundsdottir
Organizer
Hillsboro, OR
