If you are regular reader of the Brownie Knits blog, you know I primarily post about knitting, crocheting, crafting, and a few bits about everyday life. For the last few years (and somewhat earlier), I have avoided sharing on the blog the struggles that I have been experiencing. It was, quite frankly, enough to live it every day and I didn't want to write about it, too. I wanted to share my passion on here and let that be the focus. But today, I write a post that has nothing to do with needlearts. However, it might be the most important blog entry I ever post. Especially if it reaches even one person and leads them to question what they have been told about their health. So, here goes...I know it is a long one, but as I said, it is important.
About 3 or 4 years ago I started experiencing sudden onset abdominal and stomach pains. They would come out of the blue and would bring me to my knees. My back would feel like it was breaking. I went to the doctor despite my severe fear of all things medical. They did a series of tests and found nothing. "Try changing your diet and reduce your life stress." So I tried and it didn't get better. It got worse. Then, things that I would eat and be fine with one day would bring severe pain the next day. Nothing made sense so we went to the doctor again. This time she said that she already had it recorded that I had IBS. (Note that she NEVER said this to my face.) She wrote a prescription for some pills to take when I had an attack. They worked about 25% of the time and the pains became more frequent.
During all of this time, my life was being slowly taken away. I couldn't commit to activities without fear of getting sick and having to leave or ruining the night for all. I would try to gently explain the situation to friends and family and most of them were fabulous about it, but there were some who I caught rolling their eyes when they thought I wasn't looking. I was humiliated and ashamed. I felt unreliable and like a bad friend and family member. When I mentioned IBS people would say, "Oh, I have that, too. It is sometimes inconvenient." "Sometimes?," I thought? I can't even stand up. How do they work outside of the home or raise children? I must be so weak compared to normal people. I must be somehow inferior. It was depressing, to say the least.
Cut to February 2013 and I couldn't leave the bedroom. I couldn't eat. I got attacks every day and night. I went back to the doctor and she met with me for 4 minutes during which she didn't look at me. When I asked her to look at me and not the computer, she said she couldn't do two things at once and she needed to work on the computer record. My mouth hit the floor. After her nurses butchered my arm, I left with another order for a CT scan. The next day at the CT center the tech saw my arm bruised from below my shoulder to above my wrist and saw how terrified and sick I was. I told her what my doctor did and she said to leave her immediately and gave me a recommendation. I changed doctors. I met with my new doctor who had the results from the center saying it was all clear. So, we tried a different drug combo. It made me sicker. I couldn't keep any food in my system and I developed restless leg syndrome from the meds. I took myself off the new meds and went back to the old ones. I ate potatoes because they were all I could tolerate. By May I had pulled myself out a bit and we went on a vacation...trying desperately not to let it rob more of my life. But, of course, it did and there were things I had to skip during the trip.
In mid-October I had family visiting and that Sunday morning I woke up and things felt drastically bad again. From then until this past Sunday, I've left the house maybe 5 times. I got sick every single day and night. The night before Thanksgiving I was horribly ill and had to cancel on my family. My dad had driven in from PA and I didn't get to even see him. I hit a new low. The pain was increasing and SO bad that I started asking God to take me if it was my time.
On December 15th I told Patrick to take me to the ER. In the interest of honestly sharing to potentially help someone reading this, I seriously thought I was going to die that day and I didn't want my dear husband to be at home alone with me and scared. I wanted him to have someone there to help him. I didn't go to the ER for me. When we arrived I knew they would do the normal round of blood work and CT. The pain meds they gave me kept wearing out faster than they expected while we waited for results. A new doctor walked in and introduced himself as the general surgeon on staff. That should have been a red flag to me, but I didn't register the surgeon part. He said that he had good news that they could get rid of my pain, but the bad news was that I had a carcinoid tumor and that it had spread to the lymph nodes of my small intestines already. He explained that although it sounds like it screams cancer, it often is not but it can be and shares the same characteristics of slowly growing. I was stunned. Patrick was stunned. He said it had to have been growing for years given the size and spreading and that mine was causing a major blockage. I said I had just had a CT in the spring and he looked very surprised. How did this get missed for so long and on ultrasounds, 3 CTs, and an MRI?!? I was shocked, scared, angry... I asked when he would operate and he said in an hour. An. Hour! They needed to take out a portion of the intestine to remove the blockage. Before he left he told me that I should live through my 40s and 50s. What?!? 20 years. Asking if I had any other questions, I told him I wished I hadn't watched so much Grey's Anatomy because it never ends well. To which he rightly replied that nobody would watch if it did.
He walked out and I cried for a few minutes before I started insisting to Patrick to call immediate family and my friend Carol. I wanted someone to be with him. I still was 100% convinced that I was going to die that day. I was sooo sick and now I was out of hope. He wanted to wait and I forced the issue realizing that he was in a bit of shock and not processing the time constraints. Those were difficult calls. Then, I held my husband's face and told him I loved him over and over and over.
They took me up to pre-op and drugged me up. Apparently, I liked this a great deal and started talking to Bruno Mars and singing his songs. I also gave some funny answers to the nurse about my height and cracked some jokes. I remember seeing the blue mask and then seeing my friend Christina's face. Patrick, Carol, Christina, and Tonya were there waiting for me and I guess I was a lot of entertainment asking why I was in a warehouse and being witty with the nurses (between bursts of tears). I will always remember Tonya feeding me ice chips. It is like a snapshot in my mind.
This started the recovery portion and the waiting for results. I did pretty well the first day and night. The second day was TERRIBLE. On the third day we got the great news that Ted the Tumor was NOT cancer. Thank the good Lord! Ted was about an inch and a half. I had fantastic nurses who cared for me so well. Patrick and/or Carol was with me at all times. I had a team of at least 7 doctors who were great. My regular doctor came down after her business day and held my hand for 30 minutes and talked about what we could have done differently. I do not fault her one bit for missing this. The doctor I fired sat that path up long ago.
I'm now at home and trying desperately to get better to not ruin Christmas but I'm not sure it will happen this year. There are real lows to recovery, but I'm already able to eat again. When I said, "Patrick, I'm eating real food." We both almost sat and cried. It has been such a battle. So, I do not have IBS or Celiac. According to the Carcinoid Organization, 90% of midgut carcinoid patients are misdiagnosed with IBS or Crohn's and it takes 5 years to get the right diagnosis. There are only 115,000 of us in the US. After reading that stat, I was so glad that Dr. Selzer was in the ER that day and knew what he was seeing. I have a long road ahead of me, but I have hope again. I will see an oncologist for monitoring because it can, and most likely will, grow another one. But, I am hoping that we see those early before they cause pain. I'm praying that research figures out how to improve the lives of carcinoid patients so that something doesn't take us out before my 60s, 70s, and 80s.
It is an emotional experience to actually know what your thoughts are when you think you are going to die. I can say, other than wanting to NOT die and to live long with Patrick and travel and have fun together, I simply wanted to make sure that he knew how much I loved him. I needed nothing more than my mark on the world to be that I loved him and he loved me.
So, thank you to all the doctors, nurses, friends, and family. I needed you and still do. I don't intend to turn the Brownie Knits blog into one about my health, but instead will focus on writing about my passion for knitting and crochet. So, Patrick set up a CaringBridge where significant updates are being shared to keep friends and family spread all around the world updated. Here is the site, should you be interested: http://www.caringbridge.org/visit/ginakanouse