I know a few of you follow me here on this blog, and it's been woefully quiet since October of last year, and I know some people are friends with me on facebook, and know I've been going through some health issues that are sort of finally resolved.
This post isn't going to have pictures. It's not going to be extremely cheerful. I am not a person who makes a big deal about the negative things in my life. I've dealt with this stuff with my close friends and family over the last couple of months, but if other people are having health problems, I think this might help? As in don't wait so long when you feel bad, but find someone who can do something about it for you. My story, so far, is ending really really well. It could've been a lot different, and if I hadn't waited so long to get proactive about my health, it might have even been better. And if I had waited any longer... I hate to think about it. But if you'd like to know what's really been going on the last couple months, here it is.
The truth is, I've been having digestion issues for a number of years. It was all sparked by an incident of seemingly food poisoning back in 2009 over Thanksgiving. My stomach was never the same after. My husband and I thought it was a food allergy. We cut out pretty much all processed foods, all soy. Over the next few years I was tested for every food allergy, all negative.
I was tested for endocrine problems, and they found my bone density was down. In January of 2011, they removed an abnormal parathyroid gland, citing my low bone density and high blood calcium, as well as frequent kidney stones. They thought that might be the cause of my digestion issues as well.
No luck. I continued to live my life actively, hiking, running crazy ultra races, kayaking, biking, doing all the things I wanted to do, but doing them around my body's need to get to a bathroom, or to a convenient patch of moss, or feeling generally lousy after eating sometimes.
I started getting fed up. I made appointments with specialists, and after an initial round of tests, had problems with communication.
Then this summer, July of 2014, the stone started rolling down the mountain. I was scheduled for a bone density scan again, as a routine, and my bones had lost 8 percent density. My family doctor scheduled me with a specialist in Erie, and when they couldn't find anything, the found a specialist in Pittsburgh.
I was highly fed up at this point with no one being able to give me any answers to any of my problems. I was a runner, and an active person, and was pretty upset about the bone loss, and about stomach and intestinal issues that would slow me down during my favorite activities. I called the Cleveland Clinic, and made an appointment to see a digestive specialist there, and I was scheduled for an Endocrine specialist in Pittsburgh to figure out my bone loss issue. I had just turned thirty-six, and was on my way to early osteoporosis.
Cleveland Clinic... didn't impress me. I got lost on my way, which frustrated me, and though they were efficient and polite, didn't impress me. I'm sure they have a ton of people moving through there every day, so what could I do. I had some blood work done while I was there, and they said they were going to put me on a month long chicken and rice only diet. I went home a bit frustrated, but eating only chicken and rice would surely let me figure out what was causing my problems.
Two days later, I was in Pittsburgh, at UPMC Presby. I was scheduled there pretty much all day. I had a CT scan with contrast in the morning, so that the new doctor, Doctor Carty, would have a good picture of what she needed to see. They also did an ultrasound of my neck, of my parathyroid glands. And everyone was incredibly nice. I try to be over the top nice when dealing with Doctors and nurses, and these people were equally wonderful. All of them. By the afternoon, I was very happy with all the people I was dealing with, even having been stuck with needles.
Then I met Dr. Carty. People had been telling me she was a bit... intense... throughout the day. I thought she was simply no nonsense, and her personality was a bit refreshing. I'm not really a shrinking flower, so I answered all of her direct questions as quickly as I could. Then she asked me if I had any skin tags on my armpits. I stammered that I didn't think I did, but she made me remove my shirt, and to my own surprise, I did. She was momentarily gleeful, made her aid take pictures, and then told me that it seemed that I might have a hereditary disorder called MEN-1. This stands for Multiple Endocrine Neoplasia type 1. She told me this disorder can cause the parathyroid, the pancreas and the pituitary glands to malfunction, or to grow tumors that can lead to a production of gastrin in the pancreas, leading to chronic diarrhea. It can cause the parathyroid to become over active, leading to kidney stones, high blood calcium, and bone loss.
She explained every one of my symptoms I had ever had as related to this one hereditary syndrome, and I was staggered, and so relieved. She scheduled me for some follow-ups, and told me she wanted to removed my parathyroid glands from the left side of my neck, to see if that would fix my high calcium. She also scheduled me with a stomach doctor.
This was the beginning of October. She scheduled me for my parathyroid surgery on November 5.
I cancelled my follow-ups with Cleveland, as it seemed this was the answer to my problems. She told me to take an over the counter antacid, and as soon as I started, my digestion problems and heart burn ended.
I had an endoscopy with another doctor that she recommended, a Doctor McGrath.
Then the scary part started. They said they were going to schedule me with an Oncologist. There was a tumor in my liver that worried them.
Now. I know what Oncologist means. No one ever came out and said that I had cancer. No one sat me down and said, "You have cancer." But the terms "malignant" and "metastasize" were used. And I was scheduled for an appointment at the Cancer center.
I think the way I handled it was not to think about it too much. The doctor's didn't seem to worried. The way it was described, is this MEN-1 syndrome that they had preliminary diagnosed me with, meant I was prone to tumors, especially in my pancreas. So these little "gastrinoma" which are little tumors in the pancreas (I had about 11 of them in my pancreas, according to the CT Scan), produce gastrin, which causes severe digestion problems, including diarrhea and heartburn. I had 11. The concern was that there was a tumor in my liver, not large, but not tiny, that had probably spread there from one of these guys in my pancreas.
So the day I met the Oncologist, Dr. Bartlett, was the same day that they scheduled me for surgery, after Christmas. As scary as I had heard "pancreatic" and "liver" cancers are, Dr. Bartlett assured me that these kind of tumors were normal for this MEN-1 syndrome. They grow very slow, and generally aren't a problem.
Cancer is still scary. He said he would go in, and take the one out of my liver for sure, then explore the rest of the area, getting whatever tumors he could find, as well as any lymph-nodes.
So the date was set. I was still healing up from my parathyroid surgery (which was only partially successful, my calcium is still high), and I was scheduled for major surgery.
So I lived. I spent time with my family, with my dog, with my friends. I hiked and skied a little. I ran and hugged people more, and I didn't dwell on anything negative. I'd either be ok, or I wouldn't. I am pretty happy where I am in life, so I shook out a lot of the negative things in my life, worked on getting the house/yard and things in order. I had a marvelous holiday, had a few more scans and blood work done for my upcoming surgery, did all the prep work for the surgery.
One more shoe dropped. One of the CT scans for my pre-op showed a mass the size of a baseball on my uterus. It was squishing my bladder. It was a fibroid, which I had had before, one the size of a bowling ball. Being pretty certain I'm done with babies, I set it up with the doctors to get a hysterectomy while they were in there doing all of the other things. It's been 5 years since they had to remove the giant fibroid, and I didn't really want them to have to go back later in life to take out more fibroids.
I was a little sad about that, but they said they would leave the ovaries, so there would be no hormone problems.
So we went to Pittsburgh the night before and stayed at the Family House across the street from the hospital. My dad was great enough to come up from Florida into the snowy north to watch the boy and get him to school while all of this was going on.
I can't say I remember much of that Monday. I remember them putting the nerve blocks into my back. That was uncomfortable. I remember being moved to a room late that evening. Jason said the surgery took seven and a half hours. They removed a large tumor from the head of my pancreas, the one from my liver, many lymph nodes. They also removed my gallbladder, as MEN-1 can cause gall-stones later in life, and with the scar tissue they were making removing the other tumors, it would make such a surgery risky in the future. They removed my uterus. And they told me everything went perfectly. The tumor in the liver was in a difficult spot, but they had no problems. I hadn't needed a transfusion. I had 55 staples, running down from my bra line in the center of my chest, down to my pubic bone. I had a tube in my nose, to drain fluid from my stomach as the pancreas healed. I had a drain tube sticking out of my right side, just below my ribs, draining bile that was weeping from my healing liver.
Tuesday, they had me up walking and using the bathroom. I could eat nothing, just nibble on ice chips to wet my mouth.
But I'm home now. I was in the hospital for 10 days. I had no food from Sunday, January 4th to Wednesday January 14th. I've lost about 15 pounds. I've lost muscle tone in my legs. I have bruises all over me from IVs. I'm sore, and can only sleep on my back. I wear a velcro corset to keep everything held tight, for when I move. It hurts to cough, and to laugh. But I beat this stage. I walked a mile yesterday, and I will walk a mile today, and next week I'll walk 2 miles. And pretty soon I'll run a mile. Then I'll run more.
I missed the outside when I was in the hospital. I walked the halls every day as soon as I was allowed up. My digestion hurts a little, I think it will until my body realizes everything has been displaced. I had the best nurses in Shadyside Hospital's 4Main ward. This floor is for people to heal who have cancers and have had surgery. Some people will be there for a week, some people for months. The nurses helped me when I got weepy when I couldn't talk because of the tube down my nose and throat. They washed my feet and legs when I couldn't bend over, and was frustrated with being sweaty and stinky. They changed the sheets on my bed, they helped me when I needed just a little more pain relief. They were amazing. It makes me weepy thinking how wonderful these people were, and how so many of the patients there treat them with derision.
My doctors talked to me every day, at least 3 times a day, checking in. They told me how good I looked. Everyone said encouraging things to me as I walked the halls. Friends visited me in the hospital, even when I could barely croak out a few words here and there.
I don't like relying on people to do things for me. Being in the hospital and having to ask for help was very difficult for me. But I wouldn't have been able to do it on my own.
So will I be cancer free the rest of my life? Maybe. Maybe not. But I get a fresh slate to work with now, to keep track of anything else that might appear, and to have a better way to control this syndrome. Being a healthy and strong patient made all the difference. I feel good. My head is good, and my body is getting stronger every day. I will take recovery nice and slow and even so not to set myself back, but I think this is a good year to run 100 miles. To prove that I've beaten this, and that I will continue to live life fully, every day, and to enjoy the little things, and love everything, and get outside and breath in, and be very much alive.