Returning To School

Last year I had two surgeries including a debulking and a cryoablation which made me take a full year off of school at UNH and although I'm still in a decent amount of pain, I am back to school for the spring semester before my next cryoablation in the summer. I mentioned in a previous post titled "Compromising Physical Health for Emotional Health & Cryo Update" how I was worried that trying to go back to school would compromise my physical health. I'm taking the risk to continue working on my degree and moving towards my goals. School, especially college, takes a lot of energy and brings upon a lot of stress. I'd be lying if I said I wasn't worried about what will happen this semester.

Fall semester 2013 I found out that the FAVA grew back and I was in incredible amounts of pain. I was taking four classes totaling 16 credits and ended up dropping a class. I became instantly discouraged when my body stopped letting me get out of bed in the morning. I would lay there in pain for hours and not be able to move my legs. It was hard for everyone in my dorm to understand what I was going through but I physically couldn't go to class anymore. I made plans to have my debulking surgery during winter break and I only ended up finishing one class that semester. The other two classes I took "incompletes" which meant that they would extend my deadlines until I felt like I could finish them. Thankfully my dean worked with me to get all the resources I needed. Physically, mentally, and emotionally I slowly began to fall apart. Hopelessness ran through my veins and I had an incredibly hard time staying social and hopeful. The pain was unbearable and my anxiety and stress increased drastically.

I know that I still have untreated FAVA lesions in my thigh and I'm aware that I'm taking a huge risk (pain-wise) to continue to take classes before another procedure. Fortunately, I'm not putting myself at a health risk waiting. My degree is so incredibly important to me and I'm NOT willing to give up my dreams, hobbies, or talents in lieu of this illness. I understand that sometimes I'll have to set boundaries or limitations on things in order to physically succeed but my will-power to mentally succeed is too high to not try. I'm honestly petrified that my body will fail on me and not let me walk or sit through class this semester like it did the last time I was here at school. However this time I'm starting out with a different outlook and I'm not going to try to be superwoman and do things I know my body can't handle.  I'm constantly learning about what I can and can not handle mentally and physically and am learning that it is a long process and not just something you can learn quickly. I believe that there is strength, courage and bravery behind everyone with a chronic illness and you need to discover it in order to grow.

Henry David Thoreau stated  "As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives." With a deep physical path along with a deep mental path of pushing through the struggles that I will continue to face with FAVA, I believe I can make my way through school and any other obstacle. But I know this mindset has to be used over and over again in order for me to grow.

 Strength. Courage. Bravery. Determination. Perseverance. I am a warrior and so are you. 

New contrast shows more Cryo

I had my imaging appointment at Boston Children's Hospital this past week and it was a much larger appointment than I had anticipated. It was the first time I went into an appointment by myself and took the trip into Boston via train and subway. It felt more real when I went in myself and hit me a little harder knowing that this was truly a chronic illness. Most of the time the people I'm with encourage me that maybe this will be the last time but this time I didn't feel that way. I spent two full hours with my surgeon throughout the imaging and discussing the next steps and actually felt like I got to know the team a little better. After all, it wasn't going to be the last time I saw them and I felt like I should  know them  better and they should know me better. It didn't feel like they were putting on a "professional show" for me; they were truly being themselves and made me feel more at ease with laughter and medical jokes.

When I got into the interventional radiology department, I was given an IV for the new contrast they were going to use with the ultrasound. Despite how friendly the nurse was who gave me the IV, she missed several times and I nearly had a panic attack in the bed because although I've had many IV's I am still not good with needles. They were concerned about me having an allergic reaction to the contrast because I have so many food allergies and the contrast apparently had something to do with eggs. They also haven't used it on many vascular anomaly patients yet, if any so this procedure was extremely new. They watched my oxygen levels, heart rate, and blood pressure and monitored me closely throughout the entire imaging. I got very nervous because if I was to have an allergic reaction, I was going to be admitted overnight and I was at the hospital by myself.

With all the monitors attached to me it felt as if I was inpatient. They gave me a marker to draw circles around the areas that hurt the most although it seems like when the FAVA hurts, all the tissue around it hurts so it's hard to pin point an exact location. In the room there were two surgeons, Dr. Shaikh and Dr. Palotier, along with two nurses and many med students. They were reviewing my old ultrasounds and MRIs and comparing them to the live regular ultrasound before they did the contrast. What was odd about the contrast is that the full effect only lasted about 10-20 seconds before it started to fade and they could only give me a certain amount every 10 minutes.  Therefore, they had to work quickly when the contrast was given. We did ultrasound imaging for over an hour and I had three syringes of contrast. The only side effect I had was dizziness, feeling lightheaded and a bit foggy but the feeling went away within about 20 minutes. It was very overwhelming hearing them talk in all the medical terms trying to figure out where the FAVA was and where it wasn’t but I loved hearing them discuss it in front of me. It wasn't as clear cut as we had hoped and there was a lot of confusion at first.

To my surprise we found the areas that were previously cryoablated and it showed in the ultrasound that it had worked and killed the cells! It appeared almost as a black hole where the cells were no longer there. To me it was pretty cool and reassuring that the previous procedure wasn't useless. However my pain is still there in the same locations like I posted about previously and we found multiple untreated masses close to the area that was previously treated. Thanks to the contrast, we found that both masses around the locations where I had previously had cryoablated were just missed from the previous cryoablation and they are superficial and will be treated next summer after my college semester is over. They did find another small mass that was deep and connected to my sciatic nerve and close to my hamstring which sounded worrisome to me but they reassured me that they aren't worried about it doing any damage because it was so small. However, it is untreatable because  the risk of paralyzation is too great to risk. Therefore, it may cause me some pain but as long as it doesn't do any damage I'll be content. It was scary but now I'm content and am trying to manage the pain before the next cryoablation in the summer.