It all started at the age of 22. Working as a manager of a large corporate oxygen company. Life was great. Living in North Carolina at the time, not trying to get pregnant and not understanding why I became pregnant in Feb 2004. This was such a surprise and of course I was so happy but scared because in less than 4 months my unborn baby had a father that would be on his way to Iraq. I decided it was probably best to move back home at 6 months pregnant to live with my family back home in Washington state. I found a great doctor and was so happy with the support and care I was given. In order to establish my new medical record for pregnancy with this particular clinic and physician they needed to do a routine ultra sound. I was of course elated because one more ultra sound meant one more look at my beautiful baby girl. I remember going into the room, it was very dark, cold, and for some reason I was a bit nervous. The young lady came in to do the ultra sound and was reassuring me it would be quick and I would be on my way. As she started I was looking at the screen to see all the fingers and toes and every once in awhile looking at the young lady to make sure she was not making any {oh my goodness faces.} To my surprise I was there for a very long time, she kept having me turn on my side where she was getting hundreds of shots and good looks at my kidneys. I started to ask questions and she promptly told me that she was NOT the Dr. so she would not be able to reveal anything that she seen on the screen of concern.
Two days go by and I receive a call from my Dr. Saying I need to come in to discuss my ultra sound. I remember telling my mom that something was wrong. She reassured me I was thinking too much. Alone, and scared I drove the one hour trek to Olympia to see my Dr. First things first, she says, "Do you want the good news or the bad news first?" I said, "The good." She told me that my baby girl was healthy, strong, and thriving with a beautiful heartbeat. Next she said the bad news.... "We found a large tumor located on your left adrenal gland. It is not in contact with your baby, but regardless if this tumor is cancerous or not it WILL need to be removed because of the location." It was so large it was displacing my other organs, and was also trapped between my aorta and vena cava. Two main blood highways to and from the heart.
I was in absolute shock! Me? Healthy active me? The next step was to find a surgeon to take me as a patient and to basically ensure that my child would be born unharmed and that my tumor may be resected without killing me in the process. The first surgeon to a look at my scans was very frank and said, "In all my years I have never been faced with such a tough decision." He said he would not go forth with the surgery due to his inexperience in tumors that involved so many other organs. He explained why, how it would have to be done and he thought I would be in better hands up at the University of Washington. I was referred to a wonderful man by the name of Dr.Mika Sinnanan. He took his time in putting together a team to do this surgery. Many hours were spent on helping come up with the soon to be 13 hour plan for my surgery. Details included total bypass (blood), breaking my ribs, cutting across the abdomen, and putting me on any other life saving machines to keep my body alive during this long surgery. There had to be another way I said. They came up with another plan that suited me fine. Just an incision from the far left of my belly all the way to the other side nearly reaching my back. This would give them full range of anything they needed to get at during the surgery. I didn't so much mind having a huge scar across my entire body but the thought of getting sliced and diced AND breaking my ribs was just not going to work.
My little girl was 4 months old at the time of the surgery, and her dad was sent home from Iraq to be present for my surgery. Ok, so you can see how this is going....a guy who you haven’t seen in half a year, comes home to a new baby he has never met, and me with my tumor who only has a 50% chance of survival. Without this surgery I would be dead within months. You can see how my little girl saved my life. If it was not for that ultra sound I would have never known about it, and when and if I did it would have most likely been too late.
About a month before my surgery I was crying daily at every song on the radio, dreading that day, and wondering if I die who will be the woman to raise MY DAUGHTER as her own, as her mother. I was not going to let that happen. I remember saying to her dad," please don’t let some broad raise our daughter." ha-ha I laugh now but I felt so cheated and yet I was on a mission at the same time to somehow make it through this to live one day to thank her for saving her Mommy's life.
My surgery was on March 8th 2006. I recall the thanksgiving before I was experiencing discomfort in my mouth in the form of these ulcerating blisters. Went to over 10 emergency rooms in the Seattle area to get some kind of opinion. Went to an ENT who took numerous biopsies of my tongue and other parts of my mouth with no known diagnosis. As the months rolled on to the actual date of this surgery my mouth was extremely inflamed and I had NO CLUE WHERE TO TURN! Getting back to the surgery date... So, its March 8th 05' and I'm being wheeled into the operating room. My husband at the time brings to my bedside our 4 month old baby girl and she just smiles at me like "mommy what are you doing in that silly dress and why are you laying on that funny table?" It was such a blessing to know she had no clue as to what her mother was about to face.
My family was there. Everyone that ever loved me was there, that was a great feeling. They all sat in the waiting room by this phone that would ring every 30 minutes or so to update them on my progress. Our daughter was loving the hospitals aquarium which entertained her more than any of my family I'm sure. All I can say is that it seemed like seconds that I was under. When I woke up to my husband rubbing my head and saying, "honey you did great, the surgery was only 2 hours!" WHAT? 2 HOURS? Ha-ha yeah right. Of course I was not laughing, I was not even able to really speak but I knew that something was not adding up. I looked down at my body and was wrapped with a large bandage across my belly so I knew I actually had surgery and waited to ask questions later. I was taken to Intensive Care and monitored around the clock as I had so many wires, and tubes coming out of every part of my body. Later that day everyone who came to see me was amazed and knew it was a gift from god that the surgery was so successful and that I was able to awake from it all.
The next day the doctor came in to tell me that they sent the tumor to the lab for results. I was satisfied. The day after the surgery I was so driven and I remember telling my nurse I wanted to try to walk despite my entire abdomen just being sliced in half. She told me that standing at this point would be a huge accomplishment all in itself so I tried to do so. Not only did I stand but I pushed it one step further and took one step to the left. That makes me laugh all the time because it just shows you how determined I was. The next few days were filled with great nurses, walks around the hallways with my new best friend (my IV pole!)
My new bunny slippers that everyone was so jealous about got lots of compliments as well as it was almost Easter.
The recent blisters in my mouth prompted my doctors in the hospital to send a dermatology resident by the name of Kyle Garton to my bedside. He was so personable, professional, and thorough. He was exactly what I needed. I remember him starting off by taking some blood from me and placing tape on the site when he was done. The next day he came to check on me and said let me take that tape off your arm now you don’t need it any longer. When he removed the tape my skin automatically blistered. Raised, inflamed, and unlike anything I had ever seen on myself before. He examined me carefully before saying anything and then says to me, "Lisa I have been studding in class about cases like these. I need with your consent to go fill out a very lengthy report for the possibility of a biopsy of this site so I may test this skin for what I believe it to be." Without hesitation I said of course. He came back the next day after the biopsy and said I had this rare disease called Paraneoplastic Pemphigus. I couldn’t say the word for days. He briefly explained what it was and that so few had this but I feel that he was probably afraid to inform me of the grim details that followed.
The first question I asked him was if it could kill me and he responded with yes. This made my progress in surgery seem like nothing at all. I tried not to look on the Internet at what I was just diagnosed with but I couldn’t help it. I was diagnosed with a disease that will soon cover the entire inside of my mouth, abdomen, inside my vagina, and eyes. It even took over my lips. It is similar to that of being a burn victim. Open blisters that are activated by our own anti-bodies. An auto-immune disorder in which it recognizes portions of the skin as foreign and attacks/kills them off. GREAT... What’s next? So, I leave the hospital after a week with this information and some 70 staples in my belly. I was released without ever knowing what classification my tumor was because the lab did not have any "known" diseases that reflected what my tumor cells where showing. They sent my tumor to MD ANDERSON in Texas for a more in depth look, which scared me to death because all I could think of is that I had some extremely rare disease that they had to send to some special far off place to get answers from. When it came back it stated that I had a rare form of Unicentric Castlemans Disease. When reading the insert I was given on castlemans it said that 4 people a year in the United States were roughly diagnosed with this disease. So the next step was to go ahead with some chemotherapy, radiation, and IV therapy to make sure there was no residual tumor cells left behind to make and or form another tumor.
I was blessed to have met and Oncology Fellow at the time by the name of Dr. Jack Lionberger at the UWMC. He told me he would be glad to take me on as a patient but that I didn’t fit into any of the categories at the Seattle Cancer Care Alliance. I was subsequently thrown into the category of Sarcoma for reasons that he would be able to follow my care. The next couple years were filled with trials and errors as there is no definite treatment plan for people with castlemans disease, or paraneoplastic pemphigus. When my daughter was 1 I was bald as I had just been through a good couple months of chemotherapy and radiation. I received every therapy that was said to help these diseases because my doctor was so diligent and pro active. Before I was diagnosed I was very active. Cheerleading, and basketball all through high school and a 115 lbs. They put me on high doses of steroids to reduce inflammation from the blisters and it made me gain 70 lbs. I was depressed, near psychotic, and hallucinating every night. Steroids were saving my life but also taking it away. It’s been almost 5 years and I can thankfully say I am no longer plagued with blisters from PNP; just scarring that will never go away. Hey, what’s one more scar!? I thank god that I am one of the luckiest people to be diagnosed with PNP and still be alive to tell about it today. Once this disease progresses the lungs become affected with these obliterations which are like scar tissue all throughout your bronchial airways. It cannot be reversed which is the sad thing. A year ago I was having a lot of trouble breathing and have lost in the course of a year at least 20 lbs. I know live with the issues of facing lung transplant at some point in my life. I have done all the work up process ( a series of MANY tests to see if you are a fit candidate) and I am ready to get on the waiting list as soon as I feel it is necessary. I'm maintaining my lung function right now at an unbelievable rate due to a new medication they started me on. The reality of the whole situation is that one day there will be a time to get on that list but until then I am going to live my life to the fullest and experience every bit of life I possibly can.
While going through these treatments I was taking a pill to suppress my immune system on top of the steroids and because of that was diagnosed with MRSA more than 5 times, a life threatening Pulmonary Embolism, swine flu, and pneumonia.
All I can say to finish this up is, I believe I am an example on how life can be so challenging yet so blessed. I am humbled by this experience and have gained an immense amount of empathy towards anyone who does not know their way or is lost because of something in life that has happened to them. It is so true, you don’t know why someone is the way they are until you have walked a mile in their shoes. In my case I was very close minded to depression, drug addiction, weight control, and did not live to understand others. I don’t always do that now as I'm human but I would like to think I am a better person for my bouts with life threatening disease and owe my new found respect for others and life to that.
The next time you see someone down and out, addicted to drugs, overweight, or anything that in your eyes doesn’t seem "right" or seems "fixable" try to see it from this side. What would you do if you were diagnosed with cancer and were forced to take large amounts of pain killers to dull the unbelievable pain and in the course of the years with your battle with cancer you became addicted/DEPENDENT to these drugs? What would you do if you had been diagnosed with a life threatening illness and were forced to take a pill to save your life that distorted your body, mind, and soul to the extreme of gaining in excess of 70 lbs? Everyone is a certain way for a certain reason. We could all learn a thing or two from everyone's life journey and that Is my goal and mission in life. To learn, to accept, to have faith, to inspire, and to live EVERYDAY with a spice for life that makes everyone around me want to have a little bit of that spirit inside of them.
This is where my spiritual discovery and appreciation for life and all things in it begins.......
