hi, my name is kristi eder.
& this is my story
My name is Kristi Eder. In two weeks I will be 45, but I am loving 44 right now. Here I will sit and tell my story. My story starts very normally. I was born, I had a good childhood , and my parents are still together (50 years despite living through my teenage years). I started feeling sick around the age of 13. My memory has faded, but back then It was hard to explain how I felt, and I wasn’t sure if it was normal or not. I had pounding headaches, excessive sweating, heart palpitations, and an energy level that actually got on peoples nerves. I went to many doctors, and they actually thought I was a hypochondriac. A total insult!! I was raised by parents who insisted that you went to school every day unless you were bleeding profusely from the eyeballs. (Impossible you think…that’s the point!) When I was 21 years old, I shared a duplex with my friend Shari who witnessed many of my “episodes.” There is no other way to describe them. She said I used to turn “grey,” and she would have her hand on the phone ready to call 911. Episodes could be brought on by anything: stress, exercise, walking in a store, sitting on the couch… It was terrorizing! Shari helped validate that my episodes were not normal. It was not normal to have pounding, blinding headaches that pounded with my heartbeat, and episodic high blood pressure. Luckily for me, I didn’t stroke out.
My mom worked for the local clinic in Marysville, WA. She knew all the doctors, and that’s where I’d been seen since childhood. After seeing the doctor multiple times with my symptoms (but appearing to be a vibrant, young 22 year old) the doctor prescribed a stress test. During the test my blood pressure spiked through the roof, and they stopped the test immediately. When I went back to my doctor, he said there was an extremely rare chance that I had this extremely rare disease (1 in 10 million), but he wanted to do a 24 hr. UA (urine analysis). The results of that changed my life forever, and I am grateful for all of it.
The results of the UA came back. A normal range for normetanephrine levels should have been between 0-50…my number was 4,813…and guess what else? This meant that I probably had an extremely rare disease called pheochromocytoma. I should have been scared, but I was happy! For the first time in years people had to listen. I was not CRAZY! I possibly had a TUMOR! It had a NAME! My family and friends were not as relieved as I was.That’s when they started to worry. I however had a disease that had a name. I could go to the library and look it up. (Keep in mind that this is 22 years ago when going to the library was what you did.) I still have a binder with my hand written notes containing the pronunciation of pheo: phe·o·chro·mo·cy·to·ma (f -kr m -s -t m )!
Everything that I read seemed OK. It would be one tumor on my adrenal gland that would be taken out. My doctors were sure it was benign, and I would feel so much better once it was removed! I wasn’t even that scared; I just couldn’t wait to feel better. They did a CT scan and found 3 tumors in my abdomen. Once they were removed, I would be good as new!! I had my first surgery on October 10, 1989. The surgery was hard, and I was in ICU for a few days and in the hospital for ten days. They didn’t kill me and for that I am thankful! I have since learned that the anesthesiologist is the most important person in the room for people with pheochromocytomas! I’ve had some close calls.
I woke up in the hospital and the doctors said they got it, everything was going to be ok…I was fixed…go back to my life…yippee! Then the phone rang in my room, and my heart jumped out of my chest, I knew I was still sick…and I was so disappointed. The doctors weren’t really sure at first, (again the hypochondriac…REALLY!), but they did more scans and found 2 tumors in the bone in my head. I had surgery to remove the tumors and they replaced the missing skull with plastic. After that surgery I still had symptoms and my doctors did the most respected thing they could of…they said they weren’t really sure how to continue to treat my disease and they sent me to the Mayo Clinic…that’s one of my life’s many lessons and blessings…admit when something is over your head and let the experts in. Keep in mind 22 years ago an “expert” was when a doctor had “heard” of a pheo patient…haha…I still see medical staff who like to hear my pheo story…I knew I’d be famous someday, I just had no idea this was the route!
The Mayo Clinic was great and very thorough. I went through a battery of tests and they discovered that I also had 6 tumors in spine…by this time I’d had become versed in the term “metastatic” (Metastatic cancer is cancer that has spread from the place where it first started to another place in the body). I had read, (at the library…haha), that only 10% of pheo’s were metastatic and the odds at that point were not good according to the few written articles I could find…the statistics were a 44% chance of a 5 year survival rate…GULP… I was only 23 years old. They sent me back home with a recommendation of radiation to my spine. I came home and went to the University of Washington to see an oncologist. He met with me and determined that my survival rate was not good, but my quality of life was good…so he recommended no treatment, get my things in order and enjoy the limited remains of my life. WHAT? Are you kidding me? Do you know who I am! (Haha, just being funny). I immediately found a new oncologist, Dr. Livingston, he was absolutely wonderful! I learned very early that you don’t have to stay with a doctor that doesn’t take you seriously…Doctor Livingston got me set up for 6 weeks of radiation to my spine in 1990 at the local hospital. I worked at the local paper mill 6am to 2:30, got my radiation at 3 and called it a day.
After the 2 surgeries and radiation my catecholamines were still elevated…The doctor checked my bone marrow and there was disease there, so he said they were treating children that had neuroblastoma with a chemo treatment he thought might work on me. It was CVD (cyclophosphamide, vincristine and dacarbazine) combined with Adriamycin (the little red devil!). Like I said before, I have a selective memory…could be chemo brain?? I endured 18 months of chemo…I actually thought I did good through chemo (1991 and 1992)…you remember what you choose to, I know I was in hospitals a few times, had fevers, got shingles…ended up with a fissure…they gave me stool softeners and said if it doesn’t get better…surgery…yup, that was me…had surgery on my ass, just when I thought it couldn’t any worse…haha! I ended up quitting chemo in July after 18 months. I had gone on a cruise with my boyfriend at the time and I remember floating in the ocean somewhere on the western Caribbean tour…I looked at the ship in the distance…and thought, if this is all there is, it’s enough. Dr Livingstong was concerned but he agreed if I came in every month for a catecholamine check he would release me from chemo, for now. By October of that year my catecholamine levels were in the normal range…spontaneous remission? Delayed effect of surgery, radiation, chemotherapy…who cares!!! NED baby! No Evidence of Disease!!! ROCK ON!
The next 2 years are a blur…I’ve read that sometimes people make rash decisions after a traumatic event…hmmm: I left my 6 year relationship with my boyfriend…I started a relationship with the wrong man and it ended…I was devastated…I was given an opportunity to move across the country from Everett, WA to Philadelphia, PA, Scott Paper was centralizing their regional Customer Service Centers…and I took it…
So on December 20, 1994 I moved from Washington State to Pennsylvania…I Talked to Dr. Livingston before I made the decision and he said…fly, be free…He gave me a name of an Oncologist at the University of Pennsylvania…and I knew I had beat this, no worries…as only a 27 year old can imagine. I also talked to my parents, who not only never let me miss school…they raised me to be this incredibly strong, independent woman…who sometimes I don’t even recognize. They told me if things didn’t work out, they would get me home…so what did I have to lose…not one thing.
Here’s one of my favorite parts of my journey…Cancer free (or cancer dormant as I now understand); from 1993 to 2005…let me help you with the math…12 years of “inactive” disease. It was like winning the lottery every day. I remember (after years went by), not thinking about having pheo every day…I started to feel like “before cancer”…The doctors all sent me back into my life, which was the same, but I was not. The Upenn has a wonderful “living well after cancer” program run by Linda Jacobs, and she and Dr. Vaughn (oncologist) approached my cancer as a whole, dealing with many of the side effects ranging from physical to emotional. This helped prepare me for what I did not see coming next…
In 2005 the doctors found 2 new little tumors in my pelvic bone…I remember the day, March 7, 2005. I remember because Kevin went with me to the appointment, and he had tickets for the Philadelphia Flower Show…he thought I might need some spring…I walked around in a daze…It felt like my second “before”…but then I realized what it was…it was “reoccurrence”, and guess what…it was worse than the “initial diagnosis”…because now I knew…I knew surgery hurt, radiation was every day and a pain in the ass, and chemo was horrible…I would NEVER have it again…EVER! Oh, the things we proclaim.
About this time I was introduced to Dr. Debbie Cohen, the newest member of my Upenn “dream team”. She is the Director of Hypertension and specializes in pheo’s (REALLY!) She introduced me to other pheo patients and my life has been so enriched by these contacts. The Doctors just wanted to watch the pelvic tumors, which I agreed, let’s see how fast they are growing. For the next 3 years we just watched and they grew very slowly. My catecholamines were slightly elevated, but no where near where there were in the past. In 2006 and 2007 I was followed by the NIH and Upenn. The NIH had found a large tumor in my left arm …I named it the “mother ship”, because I didn’t know if it was “new and big”, or “old and missed”, (MRI’s and CT’s don’t always look at your extremities unless ordered). It was also discovered that I had many more tumors…this was the first time they referred to my tumors as “innumerable”, which just means too many to count and keep track of. At this point I was a little scared…The NIH also did genetic testing and it was discovered that I had the gene mutation SDHB, as well as my mother and younger brother…my cancer was becoming a nuisance!
In March 2008 I decided with my Doctors at the Upenn to have MIBG therapy done. This was given as an injection and you had to be quardoned off for a few days, away from family and pets. I am lucky because I am MIBG positive, the treatment was uneventful and I was able to work from home…I had a second MIBG treatment in January 2009, my disease was slowing progressing. At the end of January 2009 I ended up having emergency gallbladder surgery to remove my gallbladder. I was in the hospital for 10 days due to uncontrolled BP…on the way down to surgery I was reading my medical records and discovered that from a scan taken in the ER, the tumor in my pelvic had almost doubled in size!! YIKES! So I met with another fabulous doctor, Keith Cengel (he’s a radiation cowboy), and he put together a plan, 27 treatments to my pelic bone, targeting both the tumors. I also had my 3rd MIBG treatment the Friday before I started radiation to my pelvic. There are some studies that show coupling radiation with MIBG treatment can help each treatment be more effective. Dr Cengel also radiated the mothership tumor in my arm, since I was there. I was having trouble walking at this point due to the tumor pressure…but Dr Cengel fixed me all up…I got better through the summer, my catecholamine levels dropped (never normal, but much closer to it)…life was good!
In February 2010 I had some pain in my knee (or so I thought). I went to my family Doctor and he suggested a Doppler scan…At this point my doctors don’t mess around with me anymore…thank goodness. The Doppler scan found DVT in my left leg; I was hospitalized and started on blood thinners…In October of the same year I ended up in the ER with a massive saddle pulmonary embolism (REALLY!) What next!!!
In February 2011 I had some pain in my shoulder…I was hoping for an injury from working out…only, I don’t work out. My doctors immediately sent me for an MRI and there was a new tumor in my glenoid cavity. I affectionately named him “the little bastard”, because he came from no where and was growing fast. I was set up and started radiation within a week from that MRI. I had 16 treatments, radiation is a breeze for me…I worked through all my radiation schedules.
In November of 2011 my shoulder pain returned with a vengeance, it had never really disappeared all together. Another MRI showed the little bastard had busted through the bone and was acting very aggressively…we decided to do radiation again, and Dr Cengel, my radiation cowboy, thought it would be a good idea to have radiation twice a day, 8am and 8pm (ergo-“cowboy”). Meanwhile I am working and attending 3 college courses at Rutgers…I’m not really sure how I did it, but I completed radiation and finished all 3 courses…Oh ya, and during radiation my back hurt, so Dr Cengel ordered an MRI of my spine and I had two compound fractures in my back…I know this seems not even possible…but my dog got out in November and was hit and killed by a car (@#$#@@#$#@!@#$)…heavy sigh…I remember at one point thinking, just put one foot in front of the other, that’s it…that’s all I need to do and things will get better because they certainly could not get any worse. I’ve spent 22 years fighting for my life, but I finally understood how people get tired…
While looking at the scans of my fractures in my back, it was discovered that I had 20 tumors on my liver…GULP…that can’t be good! There was also new disease in a rib and a bone in my head (clivus). I now had disease in my clivus, the base of my skull, spine, rib, arm, shoulder, liver, pelvic, etc. I met with an onconologist, Dr. Stephen Keefe (the last member of my dream team to date). He suggested I start chemo after the radiation to my shoulder was done. While I insisted for 22 years that I would NEVER have chemo again…I simply said OK, let’s do this. I was a little surprised that the chemo of choice was CVD…That was the exact same chemo I had 22 years ago!! But I choose to focus on the success on my previous chemo…I finished radiation to my shoulder on December 8th and started chemo on Dec 13th. I was still working but soon realized I could not continue to work while going through chemo. The treatment is much more difficult this time around, largely in part to all the chemo and radiation I have had in the past (and I’m 22 years older!).. I have been pretty sick and my blood counts drop low, preventing me from receiving the full cycle of chemo and delaying the treatments each time. I am currently receiving my 6th cycle this month and will have a follow up PET scan to see how the tumors are responding. The goal is to just stop them from growing…fingers crossed. I am still not back at work, but I am grateful for the flexibility my job at Campbell’s allows me and the support they give me.
So I wanted to keep this story short, but it’s physically impossible to recap my history in brief. When I see a new doctor I just cringe when they say “tell me about yourself”…lol…going forward I will just give them this article! If I wanted to leave any words of wisdom from my journey it would be that cancer is not always a death sentence. Sometimes it is, sometimes it’s not. What I have come to realize is that I have a chronic condition…I will always see doctors and I do most of what they tell me. Everyday that you wake up you have choices…you can choose to be happy or miserable, I choose happy…My life has been blessed in so many ways. I’ve had 22 years to live like I was dying, travel, make stupid decisions and watch them work out, develop deep and meaningful friendships with many people, I could go on but I won’t. I think we are all here to leave a mark and we all have different contributions…I believe one of my contributions is redefining what cancer looks like…for me it has not been a death sentence, it has been a life sentence of discovery and opportunity.