A Trip Down South

…so once I finished the CT scan, I headed back to work, ready to tackle my to-do list.

Hours went on and I almost forgot that I had been waiting to hear from the doctor regarding the results. Since it was already after 7, I brushed it off and assumed that I would hear from the doctor the next day. After all, I was just waiting to confirm that I did, indeed, have a kidney stone.

While Danny was making cookies for my Thanksgiving lunch at school (bless him), I was working on Harper’s lunch and I just so happened to mention that I was bummed I hadn’t heard from Dr. Cudjoe yet.

Seconds later, my phone was ringing and my doctor’s name was flashing across the screen. I answered and shared that I was happy to hear from her…she did not share the same sentiment. It was almost 8 o’clock on a Thursday night. For her to be calling me then, I knew something was wrong…otherwise, couldn’t it wait until tomorrow?

I went in to the other room to talk and she asked me if my husband was around and told me that I needed to sit down. Her first words were, “Mama, it’s not good. Not good.”

Thinking back, it was like something out of a movie…there was an oblivious patient about to receive devastating news from a doctor…but first, she needed to sit down.

Danny rushed into the room and we put the phone on speaker so we could both hear the doctor. She then went on to explain that there was an 11 cm mass wrapped around my aorta. I immediately panicked and assumed this meant that it was wrapped around my heart. I’m so glad I was wrong. She continued clarifying and explained that there were also some lymph nodes that were very enlarged surrounding the mass. She said she wanted me to come in first thing in the morning to put her eyes on me and so that we could pray.

She was in tears on the other line…and I still can’t tell how I feel about that. It moved me because I felt like it put us on a more personal level…but at the same time, it also scared the heck out of me. My doctor is someone that I want to look to for guidance and strength…not tears. Either way, I appreciated her honesty and love. We prayed over the phone and then made plans to see her early the next morning.

Before we got off the phone, she mentioned that it would be good for me to get some sleep…but that it would also probably be pretty challenging. When we got off the phone, Danny and I sat together and cried (sorry Danny). We were in shock. I was still waiting for the kidney stone diagnosis. Can I trade, please?

We made some phone calls and then arranged for my Mom to come pick up the kiddos for the night so that we could try to rest and get to the doctor when they opened. Laying in bed, I felt like I was dreaming having a nightmare. The doctor couldn’t possibly be right. I was sure she had called the wrong patient and delivered the wrong news.

I hugged my babies tight and passed them off to my mom for the night. With tons of thoughts racing through my mind, all I could picture was them together, grown up…but where was I? Where did I fit into their future? This, my friends, was terrifying. I’m not ready to give up my babies yet. Sorry Hud and Harper, Mama isn’t done loving you yet.

Fast forward to the next morning…we got ready in silence and waited in the freezing cold office with tears streaming down my cheeks. I couldn’t quite get myself together, but I’m not ashamed of that.

When we were finally able to see the doctor, she shared the report from the radiologist. I swear she was speaking a different language, where was my interpreter? Out of everything she said, here’s what I heard, “…likely lymphoma…very large mass…need another CT scan.” I’m sorry, what?

So there we were, head back for another CT scan, this time of my lungs. In the previous scan, they saw some enlarged lymph nodes that appeared to be in my chest cavity and wanted to know more. They could also tell there was fluid in my lungs and wanted to check it out further.

I had the same radiologist as the day before…I wasn’t very happy to see him. He immediately said that he knew he would be seeing me again, but didn’t think it would have been so soon. I wish it hadn’t been.

He asked what my doctor had told me and he stated that the second he saw the screen yesterday, he knew things weren’t good. He said that the mass appeared to be so large that he went and got his manager to look over it. Bummer.

We proceeded with the rest of the scan and then Danny and I headed to an appointment with an oncologist that my doctor had set up. I will forever be grateful that the doctors worked together so fast to get me in.

We met with an oncologist who was fantastic…but, there was a slight language barrier that made a frustrating situation a little harder. All we wanted were answers, but all I kept hearing were big words being thrown around and my confusion continued to grow. The oncologist mentioned that he wanted to get me in for a biopsy as soon as possible. Keep in mind…at this point, it was early Friday afternoon. I wasn’t feeling incredibly confident about getting a biopsy scheduled quickly.

*Side note: in the mean time, we got the report from the second CT scan. There was fluid in my lungs and there were enlarged lymph nodes in between my lungs. “It”, however, had not spread to my lungs or any of my organs thus far (Praise sweet Jesus, above!).

The oncologist made some phone calls and found a surgeon who agreed to the do biopsy Friday afternoon…so we were set. Just as I was feeling good about things moving forward, the surgeon called and recommended that because of the type of tissue sample they were going to need, it really would be better to do the biopsy on Sunday or Monday so that it wasn’t sitting all weekend before the pathologist could get their hands on it. Well, darn.

We were told that I would be hearing from the surgeon’s scheduler on Saturday to let us know what time to arrive on Sunday. Let the waiting game begin…

On Saturday early evening, I still hadn’t heard from the doctor. I called and then waiting for a call back. When they called back, the lady made it seem like the hospital was giving them the run around because they didn’t like scheduling surgeries on Sundays. You don’t say? I don’t like having surgery on Sunday either…

While things were appearing to be unclear, my mom and Chris mentioned that they felt like it would be beneficial for us to go to MD Anderson. We kept weighing our options and couldn’t quite become confident in our decision. We prayed about it and then resorted back to everything we had heard in the past about MD Anderson. We were under the impression that if we wanted the best care, with the best doctors, and the best plan for treatment, this was where we needed to be. So, we packed our bags.

Before we headed out of town, some of my dearest friends from school met for breakfast. It was good for my soul.

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Spontaneous isn’t a word that I would ever use to describe Danny or myself…but for now, we were spontaneous. We were going without an appointment and without a doctor…but, we did have a plan. My stepdad researched and called the head of the lymphoma center at MD Anderson and let them know that we would there first thing on Monday morning with copies of my CT scans, bells, and whistles.

Fortunately, we have been blessed with the most incredible neighbors possible (shout out Wagon Wheel Way). One of our neighbors (Hey Ding, Ding)  who travels frequently for work reserved us a room at the Marriott just down the road from MD Anderson. We got in late Sunday and got our ducks in a row, ready to break down the doors of the lymphoma center at 8 am on Monday.

Much to our surprise, they were able to get us in to meet with the financial counselor as well as an oncologist almost immediately after they opened. I was absolutely floored at how smooth everything was going…[famous last words]…

Once we met with several nurses, nurse practitioners, etc., we were able to meet with the oncologist to discuss next steps. He can in an sounded rather confident in himself, so we than began talking about scheduling a biopsy and PET scan–the two things that HAD to be done in order to move forward. Well apparently, they only do certain types of biopsies on certain days of the week…so if they do biopsies of the abdomen on Wednesdays, then we were going to have to wait until the following Wednesday, at least, to get the biopsy done. Also, before you have the biopsy, you have to have a consultation meeting to discuss the process, etc., the day before you meet.

Long story short, we were going to have to wait (for an uncertain period of time to hear from a surgeon to even get the biopsy scheduled…and we had to have the consultation meeting…and then we have to make sure it’s on the right day of the week…

This lovely little trip was turning out to be a little bumpier than we had bargained for. everyone we met with at MD Anderson was amazing…and we were so thankful they were able to get us in. We did, however, learn that they are not in a hurry. What seemed like such a big, scary thing to us, wasn’t much to them because they see it every day. We were concerned because of how fast the mass seemed to grow. Each doctor that we spoke with all agreed that it appeared to be very aggressive…which is why we were really hesitant to waste time. On a positive note, the same doctors who felt it was aggressive also stated that those types of cancer typically respond quickly to treatment. So, let’s get started…why the wait? Apparently there’s a lot more that goes into getting everything situated. We were praying for patience at this point. Patience has never been one of my best qualities…some things never change.

On Monday night while we we waiting to get things scheduled, the incredible art teacher at my school began getting me in contact with people in Dallas who could hopefully move a little faster. Janette Church, you will never know how much I appreciate everything you did to help move this process along. Bless you, my friend.

I’m trying really hard to spare you all the boring details, but I can’t seem to stop typing. I’m trying, I promise.

My stepdad happened to know a fantastic surgeon by the name of Dr. Cione and made a call to him Monday evening. We decided to go ahead and drive back Monday night because he wanted me to come in first thing on Tuesday morning.

We ended up getting at his office at the same time he was returning from surgery and was waiting for us in the exam room, ready to go. He could not have been a nicer guy. I don’t know if it was intentional, or just who he is as a person, but he made me feel welcomed and made me believe that he knew he could get this done. He didn’t know me from Adam…but he genuinely seemed like he wanted to take care of me.

Surgery was scheduled for Wednesday early afternoon. It went well. I love Plano Presby. That’s where I had both babies and I knew I wouldn’t regret being cared for there this time too. I wasn’t very nervous or anything for the biopsy at this point because I just wanted answers. Whatever they needed to go to get answers, do it. I was, however, taken aback when Dr. Cione came in and asked if he could pray over me before the procedure. I guess in my mind, doctors typically are very matter-of-fact, business oriented, and come in to get the job done. Dr. Cione was different…and I am so thankful for that. It may not have seemed like much from him, but he has no idea just how responsible he was for the peace that fell over me when he began praying.

Preliminary results came back pretty quickly from the biopsy, so Dr. Cione talked to my new oncologist and decided to go ahead and get me scheduled to have a chemo port put in so that I could begin treatment as soon as possible, once the detailed path report was back. I like shiny things, but a chemo port has never been on my list of things to ask for. 🙂

So, repeat the process from Wednesday, on Thursday. I got the port put in and now feel like I’m about 95 years old. I even get to carry an identification card in case anyone needs the details of my port. Come on now, don’t be jealous.

The details from the next few days will come in another post. Thanks for hanging on for so long. I appreciate you.

 

 

 

 

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One thought on “A Trip Down South

  1. Ashley, I am so sorry to hear about what you are going through! I am very glad to read that your experience at Texas Health Plano was a good one, despite the circumstances. We will keep you and your family in our prayers! –Sarah McClellan-Brandt, Texas Health

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