September was great.....feeling good, got in two treatments. Then, in October, I started falling apart. I had blazing headaches which everyone was attributing to the weather changes or a sinus issue. This lasted three weeks and through a few doctor visits. No one had any ideas except to take stuff for the sinus issues. What was actually happening? My Pituitary Gland was swelling, putting pressure on my sinus cavity.
At the end of October, I then started with a 'stomach virus.' (actually part two of pituitary shutdown) Sick all of the time, took off two days from work. It came from out of nowhere. Ironically, it started a few hours after leaving the doctor's office for another visit about the headaches. The headaches left when the virus started. Of course, I conveniently get this through the hurricane so reaching my primary doctor was impossible-his office was without power and you couldn't get near it. Cancer Institute phones were down-you couldn't get anyone there, either. I'm trying to tough it out but realize it is a losing battle and I need help.
A few days after the hurricane I tell Dave it's time to just go to the emergency room. Electrolytes are all over the place-sodium, potassium, magnesium all dangerously low and I get IV after IV and loads of pills. They send me home. We go to my parent's house because we have no power. I'm sleeping 23 hours a day when not running to the bathroom. I'm not getting any better.
We had a vacation planned for the scheduled week off from school. Had to cancel, I was still sick. Power comes back on at home so we go back home. I am unable to function. So, back to the ER. The doctor is really concerned about my levels and is afraid I'll have seizures so they admit me. Supposedly they contacted my doctor but she knew nothing about me being in the hospital until a few days after I got out and phone services had been restored. I spend three days in the hospital and finally feel better. They send me home.
I see my doctor and blood work is crashing again. She calls my lifesaver, her endocrinologist friend. She's seen this before in only a very few patients. At this point, I look and feel like crap and can barely keep my emotions in check. I actually started crying out of frustration at the photocopier at work one morning and they offered for me to take a few weeks off to get back on track again.
Two days later I meet with the endocrinologist. She is young and wonderful. I tell her all about the last month, crying a little as I go, feeling like I will never be normal again. After going through my long list of issues, she gently put her hand on my knee and tells me she can fix all of this with two medications. I want to cry with relief. I think I did. She tells me she can almost guarantee what is wrong but I need a test first. No problem. I get a shot to stimulate a response in my body which will be measured by blood work in exactly an hour. Body does not respond. She is correct in her diagnosis.
So, what does all of this mean? The treatment drug has caused my pituitary gland to become inflamed. It is never going to heal, based on the tiny amount of people who have had this problem. It is about 1-3% of the people who get this treatment who have this response. This is why no one was looking for it-it almost never happens. Thankfully my endocrinologist has seen a few cases and knew what was happening. As a result, I will have to take a thyroid drug for life. I also have to take hydrocortisone for life as well. My adrenal glands no longer get messages to create cortisol. Thyroid is fine but no longer gets messages to create the needed stuff. I say it's like your car radio. If there is an electrical short, no matter how high you make the volume or how much you try to change the station, you get nothing.
Get a second opinion you may say? Well, a team of doctors in New Brunswick discussed my case. They decided I may as well continue treatment because the gland is permanently damaged. It will show up inflamed on MRI's and be called 'cancer' but we know the truth. It was discussed with the clinical trial people. My oncologist called and faxed with the head of treatment at Sloane Kettering and he has seen this issue as well and agreed with the course of treatment. My endocrinologist has done research on this issue and has helped people live full lives who were far worse than I was at the time.
How am I now? Well, the headaches are gone (it was pressure from the swelling gland) and blood work is better. I feel a lot better and have a ton of energy. I have to be careful because I can no longer create an adrenaline rush so I need to try to live as even as I can. I stay up later and sleep better. No more crying jags at the copier. I've lost the water I was retaining and the scale is moving in the right direction. I need to play around with the pills-more if I'm sick and such, but I can do this. I finally feel like it is the end of November-I really lost 6 weeks of life and felt like it was still early October but the Macy's Parade and Thanksgiving helped to center me again. I'm living life and ready to do things again within reasonable limits.
Regrets? Well, to be honest, I did stop a few times and say "Oh my gosh, what have I done?" I willingly went into treatment. I signed off on the potential side effects. I knew the risks. It still doesn't make it easier knowing I have caused major permanent damage to my body. It is hard to accept at times. I've cried about it, yelled in an empty house but ultimately, I've learned to accept it. The alternative is far worse. Quit the trial? Open the door for Melanoma to come back? No way. That scares me far worse than the side effects.
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