A Rough Road Ahead

Roller Coaster of Emotions

After the quick CT scan and an even quicker rush was made to get a biopsy done to find out what exactly we are dealing with in this new found growth. It’s a crazy, stressful time from the moment you are told you have a tumor while you try to find out as much information as possible. Doctors are of course hesitant to say too much without having concrete information in their hands to form an opinion, so as the subject of this big experiment you are left wondering, hoping and dreading all at once. How big is this thing? What exactly is it? Is it benign? I sure hope it’s benign and we can just cut that sucker out! Wait, how big is the tumor? THAT big? Whoa.

I found myself grasping at hope, latching on to any seemingly good news. The biopsy was scheduled for the next day following the CT scan, so within 24 hours of even knowing there was a problem. The hospital was busy, so it took nearly the entire day of sitting in the room prepped and ready before I received the actual scan. Just before the scan, Dr. Brown visited to explain the procedure and answer questions. He had looked at the scan and said the tumor did not appear to be emanating from any of the organs, just surrounding them. That’s good news, right?! If it’s not in but around, then maybe it’s benign. Next up the scan. The staff are of course caring, kind and check on you the entire way. They give you some “I don’t care” IV drugs, which frankly I didn’t need, but the local painkiller to the side of the lower chest is like a dentist needle amplified. Ouch. On the good side when those kicked in, I didn’t feel the biopsy needle at all…until later. Now We Wait, Again

Then within 20 minutes, the biopsy was done and once again the waiting game begins. Hurry up and wait. My Doctor had said hopefully results in a day, but the biopsy doctor said more likely 2–3 days, which with the holiday weekend could mean not until Monday. Ugh. Don’t they realize this is kind of a big deal to know?

It takes time to evaluate a biopsy sample. Cut, prepared on microscope slides, dyed, etc. Someone knowledgeable needs to look at these cells and determine exactly what they are. Blood work processed for the necessary markers and makeup that tells us what kind of tumor is present, and how fast is it growing, if at all. These are smart people, but it takes time. About this time I shared my first thoughts with friends and family about what was happening in my post “I Choose To Live.” There’s nothing else I can control at this point, so I’m going to keep up the active lifestyle and healthy eating habits I’ve developed and fight with everything I’ve got. Spin class on Friday was cathartic despite having to take things a little easy because of the intercostal muscle pain from the biopsy puncture.

Biopsy Results

Resigning myself to an extended wait for results, I was surprised with the call came early Thursday evening. The results were in. They explained that the extended time really allows for additional research if results take more effort or additional looks, but my results were conclusive and therefore already done and entered in the system. Here’s the pathology summary:

"Sections show spindle cell neoplasm composed of cells with elongated nuclei. There is eosinophilic cytoplasm. Tumor necrosis is not seen. MIB-1 stain shows approximately 5% positivity. Mitotic figures are less than 1%. There is positive tumor stain for CD34 and C-KIT. There is negative tumor staining for AE1/AE3 keratin, Desmin, muscle specific actin, MART-1, and S100. Staining pattern is consistent with a gastrointestinal stromal tumor.”

The last line gives the name, Gastrointenstinal Stromal Tumor. Here’s a link with some summary info on this type of tumor.

http://www.cancer.org/cancer/gastrointestinalstromaltumorgist/detailedguide/gastrointestinal-stromal-tumor-what-is-gist

The Reality

So what does that mean? It means I have cancer, and a rare one at that. Now I have a name, but what it means in terms of treatment was next on the list to find out. Can we cut this sucker out right now? My Doc was on the info warpath to find out. The CT scan and biopsy was sent to the Oncologist, and then to a Surgical Oncologist to evaluate. Within a couple hours the word came back, and it wasn’t what I wanted to hear.

Inoperable. Cannot operate.

The tumor is too big and too intertwined with important things to go in an cut. Crap. In my mind that’s exactly what I wanted to happen next, to just go in scalpels a blazing and pluck the foreign tissue out and let me get to work on recovery. That path just shifted again. Who’s driving this rig?

News was slow to come by. While the IHC My Health program gave me quick access to some numbers through the way, I’m not going too be able to meet with the oncologist until next week. Fortunately I have a knowledgeable and kind brother in law that happens to be a surgeon. He’s been sending me medical articles and info along with offering some limited advice based on what info we have so far. He can’t tell me any absolutes, but any info at this point is more than I have and I’m grateful for it.

Let’s See This Thing

You can’t see the actual CT scan images online, so it took a manual request and picking up some CDs to get those. I made the request Friday morning and picked them up at the end of the day. Now it was time to see this thing. I’m a visual guy, so I need to see what I’m dealing with to really understand.

Oh. Wow.

Again I’m grateful for my brother in law that hopped on FaceTime with me to help digest (pun intended) these CT images. It’s been many years since my anatomy and physiology classes, so I wasn’t all that great at seeing the organs in these animated cross sections. He started to point out the dark and light masses, and the sobering reality of how big and wrapped up this thing has really become. It’s a big boy. It’s got a grip on that spleen and is pushing it’s way around the peritoneal cavity. There may be a chance it’s already started to spread to some other areas.

Shoot.

Despite the slow growth numbers, that less than 1% mitosis, this is a big tumor. So that likely means it’s been growing for a long time. So back when I was a much bigger version of myself, it was likely floating around happily like a fish in a much larger tank with plenty of room to grow. Tightening up my core and removing much of the fat in my abdomen has squeezed everything in, so now I am feeling the tumor against the organs and ribs. If I was still fat it may have been much longer before this was discovered. Another score in the column of how my focus on better health has helped me!

A Winding, Rough Road Lies Ahead

It’s still a whirlwind, rollercoaster of emotions. At times I find myself feeling like my body is broken. After all this effort that I’ve been fixing up a broken ship that’s taking on water. Other times feeling like I'm making my body strong to fight the foreign invader within me that doesn’t belong. That’s the attitude I’m trying hard to embrace. That’s where I want to be, doing everything I can to keep my vessel strong, locked and loaded with all arsenal it needs to withstand the necessary treatments to fight and eventually remove this tumor.

Since getting healthy I’ve grown to love cycling as my cardio of choice. My friend Ken has been instrumental in getting me into the saddle and finding the passion for the sport. When the weather turned too cold to ride, we started attending spin class at the Pleasant Grove Rec Center, initially a bit skeptical but wanting to build and maintain through the winter. We were quick converts due to our favorite instructor Heidi who pushes us to go beyond the comfort zone and makes the class fly by with fun music and motivating programs.

My visualization of my current situation is we don't get to decide how rough the road is or where it leads, but we can choose how to ride it. I choose to spin. There will be times I have to move much slower because of the conditions put upon me, but if I can keep moving forward then I’m doing achieving all I can do. Just keep spinning.

Many have offered their own struggles with cancer, themselves or with close ones. Some have offered alternative treatment options they have experienced or read about. I welcome it all. I’m in the information gathering mode, taking in all I can. Right now my plan is to visit with the oncologist to get their treatment plan, and to seek additional opinions where necessary. For myself, as mentioned before I will work with all I can control which is my own health, fitness and healthy eating.

What’s Next?

Now once again we wait. Wait for the treatment plan, wait to see what the future holds. And for now, just keep living healthy. All of your outpouring of care and sympathy is greatly appreciated. The response to my initial post was overwhelming, and exactly what I’d expect from such wonderful people. Some have shared that my first post has inspired them to make some changes in their lives starting right now. They choose to live. That’s very rewarding to me. I’ve received messages and calls from dear friends I haven't talked to in years, as well as those I talk to often. All of it has been heartwarming and helpful. Thank you.

Yet I know everyone has their own lives, struggles and trials. I won't be talking all cancer all the time. My good friend reminded me, while it's going to be a singular focus for me, it's not the only thing in life for everyone else. How much will I share and why? I know some of you may have some interest, others may just casually pick up the salient updates out of curiosity, and that’s totally fine.

I expect I’ll write sometimes about what’s happening primarily for myself, for my family, and to answer the questions for some that would simply like to know where things stand. I won’t be watching that “like” counter as some kind of affirmation that the story is being heard. But for those that would like to be a part of the journey, I welcome you and please feel free to share with anyone, to ask your questions and to offer your thoughts. I’m an open book and if I can help some others along the way, all the better. Still my mantra continues. I choose to live. #X4Life. I choose to fight. I choose to keep moving forward.