- r
- J
Before Diagnosis
It will be five years this Memorial Day when our lives took a very dramatic detour. Five years feels and sounds like such a long time, but when we look back on it, we have been through nothing short of a few miracles. When planning for your future you never plan on something like this and I was certainly a planner. As they say, "You want to make God laugh, make plans." So when we had finished planning our wedding, able to make those last deposits on the hotel, cake, and reception for a very small modest wedding, but what we were able to squeak by with at Lake Tahoe schedule on July 4th 2010 we were relieved.
I had just graduated into the start of the recession in 2008, with lack of employment options for an Interior Design major; I had volunteered with an elementary school for 6 months and gotten myself 3 part time jobs tutoring. I worked hard to pass all of the necessary state testing with flying colors to get into the teaching program for San Jose State University. I was accepted, and overjoyed, but then got a phone call from the admissions department explaining that my San Francisco art school was not accredited. They would not take their credits. I was blindsided, in debt, and had worked for the last couple of years in pursuit of this dream.
While working with the kids, I was always sick. It was to be expected. I was going to build up the most super immune system the first year. I caught every cold and flu and everything on top of that. I still went to my classes and maintained a 4.2 GPA despite fevers or however miserable I was feeling because I wanted to teach so badly. I had something to prove to myself. I was so unhappy at art school. I wanted to help people and make a difference. I wanted my life to matter. I had just picked the wrong major, the wrong school, and I didn't want to let that experience define me. I didn't want the economy or my life's setbacks define me, I want me, who I am, who I know I am, who I can be.
Diagnosis
I had the flu for approximately 3 months, it just wouldn't go away. It got so bad I would wake up in the middle of the night choking on acid and phlegm. I went to a clinic, the doctor diagnosed me with acid reflux. The flu seemed to let up for a few weeks; I was able to work through it. Then Memorial Day 2010 I woke up with a high fever out of no where. We went to the nearest clinic that was open; the doctor there had some concerns because she saw that I was "guarding" my abdomen and with the high fever told me to go to the emergency room. I went to the nearest emergency room at O'Connor Hospital in San Jose and waited 45 minutes in the waiting room.
When I was seen I had 102.7 Fever and just explained why the doctor was worried at the clinic. The ER Doctor ordered morphine, which made me feel really sick; I didn't let the nurse finish the dose. The ER doctor thought it was viral and sent me home. On the way home I had the worst pain I had ever had in my entire life shoot into my upper abdomen. I had my husband pull over, I got out of the car, and I lay on the ground. I didn't know what was going on, he tried to call 911, but his cell phone wouldn't dial it. So I had to get back in the car, we made it home he called an ambulance and they took me to El Camino Hospital.
There Dr. Engleheart was my lifesaver and ordered a scan; they found a 2.5 cm tumor on my pancreas. I was admitted with pancreatitis and ordered to have further testing. My fever was as high as 104 that night, the nurses were amazing. I was at El Camino for 14 days. There I was diagnosed with a "Benign with Potential" Neuroendocrine tumor, which required surgery. I was also diagnosed with Zollinger-Ellison Syndrome, which I had been dealing with since I was a teenager. I always thought I had acid-reflux disease, but I had its ugly evil big brother. I had inherited this condition and my great grandfather also had survived a Whipple, but he was in 60's when he had his. I would be having mine in 6 weeks, oh and about the wedding... its time to call it off.
Bye Bye Wedding
Our relatives were gracious enough to tell people the wedding was off. We eloped right before my scheduled Whipple and enjoyed a one night honeymoon with some very loud sea lions in Monterey. It was actually pretty romantic. My husband is amazing, we would spend the rest of our honeymoon at Stanford Hospital, what was supposed to be a 14 day recovery turned into 109 days.
Impromptu Wedding in Monterey
Hello Stanford and Complications, Bye Bye Tumor.
Stanford is a teaching hospital; I had a team of Doctors lead by Dr. Jeff Norton. They did a Whipple Procedure I think in record time, only 4 hours. Now if only I had no complications to follow. A Whipple is like a rewiring of your plumbing. In my case they removed my spleen, 80% of my pancreas, appendix, gall bladder, and a bunch of lymph nodes. When they removed the tumor, they found that it was in fact malignant with another biopsy, but they were able to get it all.
At first I was recovering well, they sent me home after 14 days. Unfortunately I came right back into the Stanford Emergency Room that night because I could not breath. I had a chest x-ray and they explained I had multiple clots in my lungs. I was admitted again, this time I would spend the long hull of time there. Developing a double pneumonia, and a pleural effusion, needing a lung tap, this drained 1.5 liters of fluid out of my lung. My white blood cell count was just not going down to a good range, so I stayed there day after day, until day 109.
Back to the hospital again...
I was released again and came back for medication withdrawal for a few more days, then finally was able to stay home for some time. Approximately six weeks later I had severe lower back pain and we called an ambulance. The doctors found something around the lower spine and treated me in the hospital for 10 days with a lower back infection as a complication from my epidural from the surgery. I was able to go home, but with 6 weeks of IV medication and weekly nurse visits.
My friends and Pain Relief Push Button.
Physical Therapy
After that last infection, things started to calm down; I was able to do to physical therapy for 6 months until our funds were exhausted. With our co pay it was $90 a week. The PT was nice enough to bill some of the co pays, which we still owe him $1000 for. With my medication at the time being at $700 a month and out of physical therapy money, we used the last of Rob's reserve funds to buy a home to save money on rent. The housing market was at an all time low. It turns out that was the smartest move we made. Looking at current rental rates, they are more than our mortgage now, which would not be able to afford had we continued to rent. Our family had helped us for a full year as much as they could and we used that money to pay some medical bills and some of the co pays for my medicines.
Back to the Hospital Again...
After not having physical therapy for about a year and getting off of blood thinners for another year I had another pulmonary embolism out of no where. That was another hospital stay for another week. This meant I had to stay on blood thinners for the rest of my life. This time however, I was had developed an allergy to regular warfarin, so I had to go on the more expensive premium, not covered medication Pradaxa, Yet another expense, another visit, another setback.
Depression and Muscle Atrophy
I have to admit I was really depressed after that. I was more depressed than I realized. I had been optimistic until that point, but I thought at that point, if this can happen now, I am never going to be out of the woods. The thought of my potential cancer coming back always scared me. I had to have an annual scan every year, which is a reminder with its own scary week of waiting, but having to be on blood thinners and go through this hospitalization again really messed with my head. I felt like I was grieving my youth. Not to mention my child-bearing years. Would I be able to have a child? Probably not.
All of these things made me question who I was, my future, my worth as a woman, as a wife, as a human, what kind of future could I possibly have or give my husband? He didn't sign up for this. He got jipped. I just felt bad, so bad I didn't leave the house for six months at a time. I couldn't even leave the front door. I was missing doctor's appointments, which was really bad because I needed my blood tested every month. I was in full hide mode. Completely depressed and not being an equal partner to my husband, not being a good person, a good daughter, granddaughter, daughter-in-law, or friend.
I reached out for help in a few different ways and eventually was able to get out of the house and get back to the doctor's. Unfortunately my muscles are severely atrophied. I have lost a lot of my independence. I want to gain it back, but I need help first. We found out I qualify for in-home physical therapy and a nurse’s aide. A physical therapist can come and work with me up to three times a week and a nurse’s aide can help me with hygiene and home care. I currently use a walker and am unable to walk up the stairs on my own. My most recent fall was two days ago, on my sofa, I hurt my back doing so.
Recovery and Cured
My 35th birthday is tomorrow, or when you are reading this has just past. It has been five years since my operation, a long journey. I was officially cured of any cancer 2 months ago with my 5 year scan, well 4.9 month scan, but as far as the Doctor is concerned he says I am cured and that is good enough for me. Getting the cure, ok you are out of the woods was the greatest news Rob and I have heard, well ever. We are so happy. Ready to move on with our lives, we want to go on that honeymoon we never got to have. We want to enjoy life together again, we have been through it, we are so in love, more in love, stronger than ever, and just want to be able to enjoy our years together. We just need help. We haven't asked for help before, but we are asking now. This last step is all I need to get my life back in my hands. It will take a full year of hard work, but with my friends, family, and community behind me, behind us, I know that I can do this.
Sincerely,
Lauren and Rob
It will be five years this Memorial Day when our lives took a very dramatic detour. Five years feels and sounds like such a long time, but when we look back on it, we have been through nothing short of a few miracles. When planning for your future you never plan on something like this and I was certainly a planner. As they say, "You want to make God laugh, make plans." So when we had finished planning our wedding, able to make those last deposits on the hotel, cake, and reception for a very small modest wedding, but what we were able to squeak by with at Lake Tahoe schedule on July 4th 2010 we were relieved.
I had just graduated into the start of the recession in 2008, with lack of employment options for an Interior Design major; I had volunteered with an elementary school for 6 months and gotten myself 3 part time jobs tutoring. I worked hard to pass all of the necessary state testing with flying colors to get into the teaching program for San Jose State University. I was accepted, and overjoyed, but then got a phone call from the admissions department explaining that my San Francisco art school was not accredited. They would not take their credits. I was blindsided, in debt, and had worked for the last couple of years in pursuit of this dream.
While working with the kids, I was always sick. It was to be expected. I was going to build up the most super immune system the first year. I caught every cold and flu and everything on top of that. I still went to my classes and maintained a 4.2 GPA despite fevers or however miserable I was feeling because I wanted to teach so badly. I had something to prove to myself. I was so unhappy at art school. I wanted to help people and make a difference. I wanted my life to matter. I had just picked the wrong major, the wrong school, and I didn't want to let that experience define me. I didn't want the economy or my life's setbacks define me, I want me, who I am, who I know I am, who I can be.
Diagnosis
I had the flu for approximately 3 months, it just wouldn't go away. It got so bad I would wake up in the middle of the night choking on acid and phlegm. I went to a clinic, the doctor diagnosed me with acid reflux. The flu seemed to let up for a few weeks; I was able to work through it. Then Memorial Day 2010 I woke up with a high fever out of no where. We went to the nearest clinic that was open; the doctor there had some concerns because she saw that I was "guarding" my abdomen and with the high fever told me to go to the emergency room. I went to the nearest emergency room at O'Connor Hospital in San Jose and waited 45 minutes in the waiting room.
When I was seen I had 102.7 Fever and just explained why the doctor was worried at the clinic. The ER Doctor ordered morphine, which made me feel really sick; I didn't let the nurse finish the dose. The ER doctor thought it was viral and sent me home. On the way home I had the worst pain I had ever had in my entire life shoot into my upper abdomen. I had my husband pull over, I got out of the car, and I lay on the ground. I didn't know what was going on, he tried to call 911, but his cell phone wouldn't dial it. So I had to get back in the car, we made it home he called an ambulance and they took me to El Camino Hospital.
There Dr. Engleheart was my lifesaver and ordered a scan; they found a 2.5 cm tumor on my pancreas. I was admitted with pancreatitis and ordered to have further testing. My fever was as high as 104 that night, the nurses were amazing. I was at El Camino for 14 days. There I was diagnosed with a "Benign with Potential" Neuroendocrine tumor, which required surgery. I was also diagnosed with Zollinger-Ellison Syndrome, which I had been dealing with since I was a teenager. I always thought I had acid-reflux disease, but I had its ugly evil big brother. I had inherited this condition and my great grandfather also had survived a Whipple, but he was in 60's when he had his. I would be having mine in 6 weeks, oh and about the wedding... its time to call it off.
Bye Bye Wedding
Our relatives were gracious enough to tell people the wedding was off. We eloped right before my scheduled Whipple and enjoyed a one night honeymoon with some very loud sea lions in Monterey. It was actually pretty romantic. My husband is amazing, we would spend the rest of our honeymoon at Stanford Hospital, what was supposed to be a 14 day recovery turned into 109 days.
Impromptu Wedding in Monterey
Hello Stanford and Complications, Bye Bye Tumor.
Stanford is a teaching hospital; I had a team of Doctors lead by Dr. Jeff Norton. They did a Whipple Procedure I think in record time, only 4 hours. Now if only I had no complications to follow. A Whipple is like a rewiring of your plumbing. In my case they removed my spleen, 80% of my pancreas, appendix, gall bladder, and a bunch of lymph nodes. When they removed the tumor, they found that it was in fact malignant with another biopsy, but they were able to get it all.
At first I was recovering well, they sent me home after 14 days. Unfortunately I came right back into the Stanford Emergency Room that night because I could not breath. I had a chest x-ray and they explained I had multiple clots in my lungs. I was admitted again, this time I would spend the long hull of time there. Developing a double pneumonia, and a pleural effusion, needing a lung tap, this drained 1.5 liters of fluid out of my lung. My white blood cell count was just not going down to a good range, so I stayed there day after day, until day 109.
Back to the hospital again...
I was released again and came back for medication withdrawal for a few more days, then finally was able to stay home for some time. Approximately six weeks later I had severe lower back pain and we called an ambulance. The doctors found something around the lower spine and treated me in the hospital for 10 days with a lower back infection as a complication from my epidural from the surgery. I was able to go home, but with 6 weeks of IV medication and weekly nurse visits.
My friends and Pain Relief Push Button.Physical Therapy
After that last infection, things started to calm down; I was able to do to physical therapy for 6 months until our funds were exhausted. With our co pay it was $90 a week. The PT was nice enough to bill some of the co pays, which we still owe him $1000 for. With my medication at the time being at $700 a month and out of physical therapy money, we used the last of Rob's reserve funds to buy a home to save money on rent. The housing market was at an all time low. It turns out that was the smartest move we made. Looking at current rental rates, they are more than our mortgage now, which would not be able to afford had we continued to rent. Our family had helped us for a full year as much as they could and we used that money to pay some medical bills and some of the co pays for my medicines.
Back to the Hospital Again...
After not having physical therapy for about a year and getting off of blood thinners for another year I had another pulmonary embolism out of no where. That was another hospital stay for another week. This meant I had to stay on blood thinners for the rest of my life. This time however, I was had developed an allergy to regular warfarin, so I had to go on the more expensive premium, not covered medication Pradaxa, Yet another expense, another visit, another setback.
Depression and Muscle Atrophy
I have to admit I was really depressed after that. I was more depressed than I realized. I had been optimistic until that point, but I thought at that point, if this can happen now, I am never going to be out of the woods. The thought of my potential cancer coming back always scared me. I had to have an annual scan every year, which is a reminder with its own scary week of waiting, but having to be on blood thinners and go through this hospitalization again really messed with my head. I felt like I was grieving my youth. Not to mention my child-bearing years. Would I be able to have a child? Probably not.
All of these things made me question who I was, my future, my worth as a woman, as a wife, as a human, what kind of future could I possibly have or give my husband? He didn't sign up for this. He got jipped. I just felt bad, so bad I didn't leave the house for six months at a time. I couldn't even leave the front door. I was missing doctor's appointments, which was really bad because I needed my blood tested every month. I was in full hide mode. Completely depressed and not being an equal partner to my husband, not being a good person, a good daughter, granddaughter, daughter-in-law, or friend.
I reached out for help in a few different ways and eventually was able to get out of the house and get back to the doctor's. Unfortunately my muscles are severely atrophied. I have lost a lot of my independence. I want to gain it back, but I need help first. We found out I qualify for in-home physical therapy and a nurse’s aide. A physical therapist can come and work with me up to three times a week and a nurse’s aide can help me with hygiene and home care. I currently use a walker and am unable to walk up the stairs on my own. My most recent fall was two days ago, on my sofa, I hurt my back doing so.
Recovery and Cured
My 35th birthday is tomorrow, or when you are reading this has just past. It has been five years since my operation, a long journey. I was officially cured of any cancer 2 months ago with my 5 year scan, well 4.9 month scan, but as far as the Doctor is concerned he says I am cured and that is good enough for me. Getting the cure, ok you are out of the woods was the greatest news Rob and I have heard, well ever. We are so happy. Ready to move on with our lives, we want to go on that honeymoon we never got to have. We want to enjoy life together again, we have been through it, we are so in love, more in love, stronger than ever, and just want to be able to enjoy our years together. We just need help. We haven't asked for help before, but we are asking now. This last step is all I need to get my life back in my hands. It will take a full year of hard work, but with my friends, family, and community behind me, behind us, I know that I can do this.
Sincerely,
Lauren and Rob
Organizer and beneficiary
Robert Van Brunt
Beneficiary