Unfortunately as time progressed new symptoms appeared including night sweats, vertigo, constipation followed by a lack of appetite. Now I stood at 132lbs from my former weight of 180 , people began to notice. I knew there was something seriously wrong and scoured the internet to self diagnose.
Besides the health impact I was worried about how I was going to manage money since it restricted my ability to work on camera. I had no other income than my job to job situation as an artist and was unable to afford health insurance not to mention a high rent to cover. I delayed going to a doctor because of this until this became a pretty serious issue not going away.
I went to the San Francisco free clinic and had blood,fecal and urine results for a possible diagnosis which resulted in nothing out of the ordinary. However the doctor there was quite worried it could be cancer. It upset me he would rush to that conclusion but was sent to the county hospital emergency ward for further diagnosis.
Let the bills begin. Just the simplest visit set me back $1500. I was told there was no way I could afford a colonoscopy but had to anyways. I had no idea what I was going to do but at least I had a good amount of open credit just in case until that ran out and I tried to crowdfund which has been an amazing help.
I went in barely able to walk or stand for a period of time and they recieved me in on June 21st, summer solstice. One of my favorite days of summer. They proceeded to exam me but couldnt complete it because my system was not cleared out completely for video inspection.
I had to drink over 5 gallons of incredibly awful tasting liquid to become clear in less than 24 hours. I was bloated and feeling like I was going to deliver . I coudnt take anymore of this and had trouble urinating. They kept threatening a catheter which they finally did as I whimpered. They stopped short on my screams and an hour later I was able to relieve myself of this misery on my own.
The next day they gave me my colonoscopy exam and found 2 polyps both were removed safely however they also found a large 10cm baseball sized tumor that was blocking my intestinal passageways. Fortunately it was only classified as stage 3 and treatable. In doing so however they punctured my stomach liner and put me in a life or death situation. I had to have emergency surgery to repair their mistake and I woke up not only with a colostomy bag but with staples over the incision from my navel to my groin. Imagine that surprise.
Because of the severity of the mass a MRI was ordered up in addition to a CAT Scans to understand what the course of action would be .This initial visit involved a endoscopy, 2 colonscopies (first one was stopped midway because of a large tumor) 2 MRI's, 2 Catscans, more bloodwork and a visit at intensive care. I ended up 4 weeks in the hospital before they released me to my parents. During the course of my entire treatment I had over a dozen catscans and MRIs thereafter
I had to leave SF to my folks hometown 80 miles south to heal, at this time I was down to 103 lbs. A pure skeleton considering I was 185 just 6 months before and it absolutely terrified me and my folks. I was put on chemotherapy and had some ill effects , naseau, blisters in my mouth and inability to taste food etc. It was truly cruel since I had to eat to gain weight and everything was tasteless and painful to eat.
After 4 weeks at home I developed a huge abscess on my rear that left my in pain sitting or even laying down on it, I asked the doctor what it was and he said it was the tumor. Told me it was okay but one night at home it bursted and left a gaping bullet sized hole in my cheek down to the bone. I was rushed to the hospital and was told it was a huge abcess afterall. I spent the next 71 days in the hospital having this treated. They had to shove gauze into the open wound every day for drainage and I screamed cried until just a quiet whimpering daily. It was an unimaginable level of pain.
The thing that saved me was my unwavering friends and family there almost everyday. Home cooked meals, take outs, kind words from over 100 people that visited. I could not have done it without a support team. Im told Im a warrior and Im so strong etc but the real truth was them and their love. I am weak without it even if I retained a sense of humor and positivity throughout.
I went on to radiation treatment at UCSF an advanced medical facility but even with targeted treatment my skin turned purple and as frail as tissue paper. I had to be delivered by ambulance and wheelchair to even recieve the treatment.
Its completion was just after thanksgiving of 2017. I was discharged and sent home to heal. My parents attended to my every need at their home and slowly but surely I started to gain weight and my lust for life.
I had to follow up for surgery consultation in february expecting the best but the surgeon gave me the worst. She based a prognosis on my MRI from june before my treatements and told me she wanted to remove the tumor but also my bladder, prostate, lymph nodes, spinchter and anal walls leaving very incapicitated for the rest of my life, further details spared.
Over my time since being home I managed to get to 157 lbs now and becoming my former self in spirit. Im feeling so good but the surgical diagnosis has loomed. I demanded a new MRI and second opinion at Stanford rather than the county hospital I was treated at. It made sense to me to have a current image of my body and see an expert surgeon that had not already made a mistake on me the first time.
My current MRI 2 weeks ago in March showed the tumor had shrunk and was no longer pressing against the organs they wanted to remove.. just in case.
I am currently on a maintence chemo and ready to bring this MRI to Stanford for further options. Im scared of course but have a lot of hope, I do meet this health issue head on and look forward to enjoying life again as I always have.
The mindset I have now is to remember what you do have not what you dont. For me its absolutely family, friends and loved ones but most of all good health.
This new journey my body is taking me on makes me realize just how important it is to just take a hike in park on sunny day without feeling anything but bliss , its a simple thing easily taken for granted until you physically cant do it anymore.
I know so many of the people around me are struggling financially and do not want to place my burden on anyone but if you can help me in any amount it is greatly, greatly appreciated. I wish I could work to support myself better but currently I have no way of doing that until this medical issue is resolved
- Janice M. Norman
- Jane Pyle
- Mark Lavell
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