Kristi Engelstad

First post: Mar 11, 2017 Latest post: Apr 10, 2018
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On Wednesday, February 22, I felt like I was getting another kidney stone. I went to the walk-in that Thursday evening to get some Flomax to help move the process along faster because I was planning on leaving for a work conference on Sunday. On Friday I had some discomfort; I woke up that night with some pretty bad pain. On Saturday I was in quite a bit of pain, but Brody & Logan had a Lego competition at the Fargodome all day, and Jeremy was working at the Home Show, so I pushed through it. Around 4 PM the pain became pretty severe; at 6 PM I called Jeremy to come home - I was going to go to the ER for some pain medication (I've never had any pain meds before, but this pain was pretty bad). Once in the ER, the doctor asked me to lie back so he could examine my abdomen, and I collapsed onto the floor. The pain was unbearable and I couldn't breathe. I quickly got some dilaudid, which helped me feel much better. 

I spent over an hour in the ultrasound room. During the exam, the technician told me that I had a huge stone on my left, a large one on my right, and my right ovary had a cyst. I knew something else must be going on because she left the room to talk to the doctor a few times, but I had enough dilaudid in me that I didn't really care. Once back in my ER room, the doctor came and told me why I was in so much pain - my abdomen was filling with blood from the cyst that burst, and that blood was pushing on my diaphragm, making it difficult to breathe. I was admitted to the hospital to watch my hemoglobin and blood pressure and see what my cyst would do. I called Jeremy to tell him I wouldn't be home (he was home with the boys). My parents were in Florida on vacation, but I was comfortable and slept for a few hours that night. 

Sometime early Sunday morning I was brought to CT, and very quickly after that CT I was brought to surgery. I am thankful that they were able to call in the OB surgeon to perform this procedure. I was able to ask him to try to save the ovary if possible, but I told him to do what he needed to do - I was not going to be mad or devastated if he had to remove it. When I woke up, he told me that he had to remove the right ovary and tube. He said that what was left of the cyst that he removed was football-sized and I had between 500 - 1000 cc of blood in my abdomen that he washed out. I was released that evening with instructions to visit my urologist about the stones ASAP. 

On Wednesday, March 1, I had a urology appointment. I had two very large stones - one on each side. Lithotripsy (sound waves that break up the stones) only had a 40% chance of being effective, so he recommended a ureteroscopy - he would go up there and remove the stones. So 4 days after my salpingo-oopherectomy (cool name for removal of the ovary and tube), I had the two stones removed. Unfortunately, during the surgery my left ureter was damaged because of the size of the stone. I was the unlucky recipient of bilateral double J stents, which are tubes that go from your kidney to your bladder... one on each side. And, instead of the 1 week that I knew I would have them, I now got to keep them for 2 - 4 weeks. 

Recovery from that second surgery was difficult to say the least. That Sunday was by far the toughest day. Jeremy was working at the fire department and my mom had the boys, but I was very, very sick. My blood pressure was extremely low, I was dizzy and extremely nauseous. Luckily, Monday I started to feel like I might actually survive having these two stents in for 1 week (at that point I was going to BEG the doctor to remove them after 1 week... there was no way I could tolerate 2 weeks with them in). 

At 6:09 PM on Monday March 6, I received a call that I never, ever thought I would get. The very kind OB surgeon from Essentia called to tell me that I have a very rare type of ovarian cancer called granulosa cell tumor of the ovary. He explained that he truly didn't think the pathology report would come back as cancerous. The surgeon is older, and he said that he had only seen this type of cancer once before, when he was in residency. The good news was that this type of cancer has a very high 5-year survival rate if caught early. The bad news was that mine had burst in my abdomen, so there could still be cancer cells floating around in there. Neither Sanford nor Essentia have doctors that can help me, so I will be traveling to the University of Minnesota and the Mayo Clinic to meet with a team of gynecologic oncologists and we will pick which team will fit our needs best. 

Since this type of cancer is so rare, there is very little research on it, which stinks. I will likely need a complete abdominal hysterectomy, and after they see what is in there, they will decide if I need chemo or not. If I do need chemo, it will likely be one of two types, both of which could hopefully be administered in Fargo rather than Minneapolis or Rochester. 

I am so, so scared, but it helps to know that I've got the best group of family, friends and co-workers to surround me and help me win this fight. I've got a husband that I love and two little boys that need their mom around for a long, long time; I WILL win this battle. 

Update on the boys:
The boys know that when I had my first surgery, the doctors found some parts that weren't working. Since I didn't need those parts, they took them out. Once they were out, they found out that those parts had cancer in them. They know that Jeremy, Grandma and I traveled to Minneapolis and to Rochester to talk to some doctors, and those doctors decided that I need to have another surgery to take a few more parts out. Those doctors also decided that I need to take a medicine that will help make sure that all of the cancer is gone. The medicine will make me lose my hair and feel kind of yucky.