In the beginning...

Sunday August 8th, 2010

I woke up to go attend mass with my sister & dad. We came home & had breakfast with our other siblings. My sister, Cathy, had taken me to my home to hang with the kitties & to do laundry. My big boy, Elston, was totally all over me, including in the bed. He hovered and finally situated himself by my right shoulder. I had to make sure he didn't accidentally access my portacath with his claws. The other 2 came & went but I did take a nap with 2 of them. We brought more things back to my dad's since I'm not using them ie. saran wrap, tinfoil, parchment paper.

Someone had written me and said that it seems I'm handling my situation pretty well, outwardly. I wrote him back telling him how it wasn't always this way. I wanted to inform you all how my journey had started. I'm warning you now, it's a LOOONG blog this time.

I started having this persistant pain in my right side under my rib cage, back in January. I didn't have nausea and if my bowels were "off" it'd only be for a day or two, but then it'd resolve and I would blame it on something I had eaten. My doctor drew labs checking liver & pancreas enzymes along with a bunch of other blood tests. They all would come back normal. Over the next few months he ruled out a hernia, gastritis, constipation, etc., he'd even recheck labs which still came back normal. However my pain was getting worse. My ER doctors were telling me to have him scan me or get some imaging done because this has been going on for too long. I was still very active, never jaundiced, eating well, etc..

Finally in May, he did a CT with oral prep only of the abdomen, which came back normal. He then scheduled an ultrasound, because now my abdomen started to protrude. That was May 19th, I knew something was up because the technician was asking me how long I had this problem & when I asked him what he saw, he told me to talk to my doctor. Hmmm. The next day, May 20th, my sweetie and I had spent a day in Milwaukee. I had called my doc's office after 1 pm, I was told that he'd call me back by the end of the day & that my results were in. Since I was told that my CT was normal & if there were any abnormalities, I hoped he would've said something right away, at least the doctors @ the VA notifiy patients as soon as they find out. We ended up going to the Miller Brewing Company & got our 3 free beers. On the way back to the parking lot, I had just missed my doc's call. I called back & the office was closed. I figured if it was important he would've said so to page him, it was just a message to call back during business hours by the clerk. So sweetie & I ended up going to an Irish restaurant, he got a flight of beers & I had a black & tan. Our dessert also had 3 types of alcohol in it.

Friday, May 21st, I had called the doc's office, he rotates being open every other Fri. & Sat. with his office hours. Of course it was closed but now I was determined to find out the results so I had him paged. He called back around 1pm and the first thing he said was, "Do you know a hepatologist? You have liver MASSES." If I would've known this YESTERDAY, I wouldn't have had all those alcoholic beverages. I called my dad, since he works @ UIC to see if he knew anyone. Then he said he'd have to look @ the directory when he got home. I texted a great UIC GI fellow who had worked with me in the VA's ER for the past several years, Dr. Jae Kim. He texted right back with the name, Dr. Jaime Berkes. He then told me how to make an appt. @ UIC and if I needed a sooner one to let him know, Jaime was sitting right next to him. It turns out that Jaime had also worked in the ER with me @ the VA about 6 years ago. I was severely upset with this news but I knew I had to do what I had to do to get to the bottom of this.

The next few weeks were filled with a very detailed MRI with IV contrast & more labs including a CA 19-9, the cancer marker. The MRI looked very ugly with necrotic areas in my liver, both lobes were affected and the CA 19-9 came back elevated which led to a liver biopsy the day my dad & I went back for the results. Things were not looking very good. I was admitted to UIC's 7 East and had the biopsy that day. When my dad & I got to the floor, I noticed a big picture of Walter Payton in his Bears uniform to the entrance of 7 West. I joked, "Maybe I'll be on that floor someday & my family will visit, they LOVE the Bears." I texted Jae and he came to see me. Since dad works in the pathology dept., he & Jae were able to coordinate specific samples so he could look @ them. We called our family & I asked my sister if she could get an overnight bag, my phone charger & toiletries for me. They were ruling out some other things like infection, lymphoma, etc., other things that are more treatable. Jae told me, "I'm not going to let anyone touch you if I don't think they know what they're doing." That reassured me.

Here I've been a nurse for going on 17 years. It was odd being on the opposite side of the gown, riding on the litter, getting the IV & labs done. I hadn't been hospitalized since I was born. I made it to the biopsy room and I didn't realize that they had already started giving the sedation through my IV because I kept talking, then I hear in the background, "Is that her? Is she still talking?" Next thing I know I blinked and when I opened my eyes, the procedure was over. I knew they did something because I had a bandage on my belly. I told a coworker about the sedation, she told me that her husband argued with the doctor because he was sedated so well that he didn't believe his colonoscopy was done and didn't want to pay for it. They monitored me for about an hour before sending me to my room. I had to lay still for the next 4 hours, I had to sit on a chux (boy those things are hot) and wear compression boots (those are hot too). They served dinner but I couldn't raise my head more than a few inches. Now I know how patients feel. UGH!

My dad had left and my friend, Joy, came to see me with my goddaughter. However, they wouldn't let my goddaughter up, they have age requirements. If I knew she was coming to visit I would've warned her but she had surprised me. Luckily the security guard watched her while Joy came up with a picture Maya had colored for me. I was so happy. Then Gabe & Lisa came by near the end of visiting hours, with some reading material. The nurse was kind & didn't boot them. I still was waiting for the 4 hours to be up so I could walk to the bathroom. I did not want to use the bedpan. When the time came, I unplugged my compression boots & hobbled over. Whew! The night was rough, mechanical beds are uncomfortable along with the hot chux & boots. The nurse said I could take them out. I know not to put a pt. on these things unless it's truly necessary. The next morning, the doctor's made their rounds then my friends Joe & Fred came to see me. Dad came later to retrieve me but didn't bring my toiletries or my phone charger. Doh! I had to shower with their disposable towels, which didn't work well with my hair.

We had to wait about a week for the biopsy results to come back. Our dad unfortunately got to see the results before I knew them. That week I tried to read his expressions & to get it out of him. He told me, "I'm just a member of the orchestra, you need to talk to your doctors, the conductors." He wasn't smiling & saying, "It's alright", and he wasn't crying. Then he said, it was an aggressive tumor & there were more tests that needed to be done. June 14th, was when we'd find out the results. I figured that if was bad news, how do you tell your own daughter. I was crying pretty much since mid-May when I heard, "liver masses". One day, while I walked into work, a veteran told me, "Keep your head up, baby." That's that positive vet attitude that I love.

Our sister, Jenny, dad, & Dr. Kim came to be me when I got the news. I had texted Jae earlier, "Should I bring a bottle of tequila?" Dr. Berkes looked serious and reminded me about the elevated CA 19-9 marker, and it was confirmed that I had cholangiocarcinoma, bile duct cancer, which is very rare and then told me that I'd have 6 months to live. It hit me all at once, "Did I just hear that?", "Why me?". Things seemed surreal, then I saw my sister & dad cry. We all hugged each other, including my 2 doctors. Then I thought, "I'm not ready to go anywhere, Marie hasn't started driving, I haven't seen the rest of the Harry Potter & Twilight series, I'm not ready to go anywhere in 6 months." Jae & Jaime left us alone. "How do we tell the family?" was my next thought. Jae returned and told me that he knows of other patients with the same diagnosis who have gotten a few years with chemo. Jaime came back & apologized for telling me 6 months and that he'd set me up with Dr. Mehta, the oncologist, who would see me that day @ 1pm. Dad, Jenny & I started notifying the family that we needed to meet tonight for important news. On the way to the cafeteria, we saw the Walter Payton #34 walk-a-thon shirts for his liver charity in the gift shop. I got one. We did see Dr. Mehta and he told us of the chemo meds and discussed the possibility of debulking the tumor as well. I told him that we'll get back to him ASAP, we need to discuss this with family. So much information in one day.

I had called Sweetie, & he came by so I could have someone to lean on while telling the family. As they started trickling in, some found out before others because dad was in the driveway informing them. My sister got on me, "I thought you'd tell them all @ once, how did they find out?" Then my one brother told me, "Why didn't you tell me earlier, I could've looked this up?" I told him, "When you get cancer, you can tell people how you want to. I want to tell them with hugs & kisses, & in person." Everyone has their way of dealing with this. :o)

The next day I invited my closest friends over to tell them. Dad's girlfriend came & the siblings who couldn't be there the day before came as well. I wore my Walter Payton shirt & some got an idea of what was coming. I found out later that this is the same cancer he had. When I told them that I wasn't ready to go anywhere because of the Harry Potter & Twilight films, our friend, Fred sad, "If that's all you're waiting for, you better off yourself now." Disbelief, anger, & sadness took over these past few days. I had also informed my boss and let her know that it was okay to inform the staff. That's when I started getting angry @ the cancer and at God, seeing how it hurt the ones I love.

The next day, Wed., I had to go to work. I had a revelation in the shower. Maybe this happened to me because my friend's brother who has the same diagnosis as me, if I can get my foot in the Mayo clinic door or access to a unique treatment, I can share this with him; if they can't cure me, if whatever they find with me, they can cure someone behind me; this brought a lot of people together & I hope these bonds continue if I should pass. I apologized to God too for being angry with him. When I left for work that day, the sun was shining and there were a lot of butterflies in my backyard, my neighbor had pointed it out to me. I went to work with my new attitude and shocked my coworkers: a) just by showing up and b) I was filled with energy, "No more crying for Jessica" and told them of my revelation. I also went to see my patients, they don't have one type of cancer, they have 3, plus diabetes, heart disease, liver disease and they've seen the worst of the worse, some beat addictions, & they're very strong people. One pt. told me that I impressed him, here I just learn that I have an incurable cancer and I was there taking care of him. He promised me he'd quit smoking, I hope he did.

I ended up having a CT with IV contrast of my ovaries to rule out that this cancer may stemmed from there, and it didn't. I called the Mayo clinic with the information to get a 2nd opinion and to see if there's any recent treatments for this. Anyone can call the Mayo clinic, you don't need a referral, just your diagnosis, labs, specimens & any copies of tests that were done. I was called that Friday to see the GI doctors that Monday. My boss was very understanding & gave me that Friday off to prepare. Jae helped my dad get most of my chart together. I had to get my MRI copy and that lady went above & beyond to help me get it that day. Paul was able to get tickets for himself, dad & I. Sunday, sweetie met me for lunch and came home with me to help me clean up a bit so I could finish packing. I think it really hit him when he saw my bags. He helped me load my stuff in my sister's car, he was on his motorcycle that day & we had hugged & kissed before she brought me to my dad's. We had celebrated our nephew's birthday & Father's Day with friends and family, then we headed off to the airport. On the way we heard, "Wind Beneath my Wings" by Bette Midler.

I had met a very nice lady on the little American Eagle plane which I've kept in touch with. She kept me sane on the plane while I kept her from puking. She gets motion sick and came from New York after doing a Sex & the City tour with some friends = hungover. The Mayo clinic was a nice experience. We gave them my chart & specimens, dad told them, "For once, I'm I hope I'm wrong." They just confirmed what UIC had already found out and that there were some treatments but they do them back in Chicago. They had also told us, "Even our most aggressive female surgeon won't touch you." and recommended chemo ASAP. Lovely, I told you my cancer was ugly. I did donate blood for research then we decided that we'll let's go back home.

That pretty much is my history of where I'm at today. We made that appt. with Dr. Mehta and Vera, my nurse practioner, to start my chemo and to get a portacath placed for easier access. I've decided that a positive attitude will help to heal quicker, prayer, love from family, friends and coworkers & humor will also get me through this too. Sadness will wear you out. It does creep in at times and frustrations but it's mostly when I'm knocked down from the chemo.

I told you this blog was long.