It's been quite a week...

Forewarning: this will be a long post. But it's an important update on me, and there is good news at the end, I promise. 

Last Monday, Jarrod and I celebrated our 7th wedding anniversary at the Lake of the Ozarks. Can you believe it's been seven years? I can't...

But really... it wasn't much of a celebration at all.

We had planned to spend almost nine days at the lake, but that got cut short. And was clouded over with some medical news I received right before we left.

So, I've had this hard lump/bump in my abdomen since February. It started out right above my belly button, right below my scar. I brought it up to my CF doctor, she felt it, and thought maybe it could be a hernia or my scar tissue changing; since it wasn't causing me any pain or discomfort, we took the "wait and see" approach. If you didn't know (because I never wear a bikini) I have a very large scar on my abdomen due to my intestinal surgery I had when I was born.

As time went on, it changed a little. It expanded to more of my scar. I briefly brought this back up again at my appointment right before my hospital admission, and she still was not concerned.

Finally, after talking to a friend about it, I decided to go see my primary doctor to find out what it was. He ruled out a hernia but agreed it wasn't too concerning, likely something with my scar tissue changing, and ordered an ultrasound to look at my abdominal wall.

The next day I went for the test, a technician came out and said that after reading over my chart, she felt I would better be served by having a CT scan. I agreed to go ahead and do it, since we had our anniversary vacation coming up the next day, so it would be over a week before I could come back in and get it done.

That day they called me with my results, and it sent me into a tailspin. They said they found a mass on my liver, which could be a "benign lesion" or something metastatic, and multiple nodules in my abdominal wall, which would probably need to be biopsied. They set me up to see an oncologist the next day.

Wait... what?! Mass on my liver? I went in to find out about my scar, and suddenly there's a mass on my liver?

That Friday, when we were supposed to leave for vacation, we saw the oncologist and despite what the CT scan said, he said this didn't feel like cancer. Actually, he wasn't very concerned about it at all after my exam and finding out my CF history. See, the CT scan did not take into account any of my history with CF. It had no mention of there being scar tissue in my abdomen either, and all of these nodules are right around my scar tissue. Plus, I was able to pull up 4 years of ultrasounds mentioning calcifications in my liver that were in the exact same area as this "mass" was. I brought those with me, and with all that combined, he was not concerned and told us to go on our trip and we'd deal with it when we got back. He wanted to do a PET scan just to make sure nothing was going on. We went with that good news, shared it with our parents, and decided to leave for our trip Saturday morning.

By Sunday morning at the lake, I was having doubts. I didn't want to wait two weeks and agonize over what this was... I wanted to come home early and do the scan. So last week I called them Monday morning, they set me up for the scan on Friday, and set up my follow up with the doctor for the following Tuesday (today.)

But that Monday, our anniversary, I was a mess. I was hysterical, there is no other word for it. My whole body was tense with worry, I could barely function, I was scared to death that this would be a stage IV cancer. I don't know how many times I cried, all I wanted to do was lay around the house, I had no interest in doing anything. I was completely depressed. We cancelled our dinner plans, because with me being in such a funk, there was no point wasting money on a nice dinner out. We tried to salvage part of the day with an evening boat ride, and that helped a little, but the whole trip was out of whack and we decided to come home on Wednesday.

I'd say Monday was my lowest point. But every day, leading up until today, I've had bouts of worry. Some days were better than others, some days I could calm myself down and remind myself of what the doctor told us ("I don't think this is cancer, I don't think this is anything to worry about."), and other times I fell back into that pit of worry. And almost every day Jarrod had to patiently talk me back down and get me to remember all the good news we had so far that pointed to the fact that this was not cancer.

It just didn't make sense... I had NO other symptoms. I wasn't tired, I wasn't in pain, I still have my appetite, I'm not jaundiced, all my bloodwork was pretty normal, on and on. Yeah, this hardening of my scar tissue felt kind of tight and like a pinching feeling at times, but I told him all that, and he still didn't feel this was cancer.

Friday, the scan went fine. So, for the PET scan they inject you with a radioactive material and you have to sit for 45 minutes. In this instance, it was me and another lady sitting there. I know I looked scared out of my wits, so she started to talk to me. I said I was afraid, and she said the test was easy and nothing to be afraid of. I told her no, I was scared what the results might show. Through a brief conversation, I learned she had the same doctor as me, that she used to have lung cancer, and she gave high praise for this doctor. She told me that "Anything he tells you, he says from his heart." and that I should trust him and the fact that he wasn't concerned about this. It was nice to talk with her, and I have to believe God placed her there for me. She was also the second person who told me wonderful things about this doctor.

So today, we saw the doctor. And after the PET scan, he still says this does not look like cancer! Yes, both the area in my liver and the nodules around my scar lit up on the PET scan, but they didn't light up as bright as cancer would. So that tells us that there is some sort of inflammation or infection there, but there is a very small chance it would be cancer. He recommended that I follow up with my CF team and a surgeon with them to look at my scar tissue laparoscopically and do a biopsy, just to find out what it is. So we are still not done, but right now, all signs point to this not being cancer.

I admit I was not entirely relaxed after this news, I think I was hoping for a definitive yes or no answer today. But I realize he can't definitively say that right now, without a biopsy. However, we really did get the best news we could have hoped for. The thing I am clinging to most, as good news, is that NO OTHER spots on the PET scan lit up, which means this does not look like something metastatic. That is very reassuring. I mean, my lungs lit up, but he fully expected that because of inflammation in my lungs from my CF.

He said there are many things this could be. Is cancer one of them? Yes, but that is way down the list. Something is going on with my scar, we knew that, and now we just need to look at it and find out what it is so we can address it if we need to.

I am so relieved right now, and feel like I can finally get back to a bit of normalcy. Getting through to this day felt like the slowest march ahead. This has been quite the week, and I don't know if I've ever had a more difficult week in my life.

I have been praying and pleading with God so much. I felt deeply in my heart that God is not done with me yet, that God has more plans for me, and that this would not be the end. Also, on Friday before my PET scan, while I was praying once again, something happened that I just can't quite explain and it might sound silly, but I think it was the sign I had asked for days before. I was laying on the couch, eyes closed, listening to the TV, mostly praying and worrying, and I felt a tap tap on my shoulder. Clear as day. I actually opened my eyes and looked up to see if anyone was there. There wasn't, but I have never felt that feeling in my shoulders before or since. I feel like it was God telling me he was with me. Even if it was a muscle spasm, it came at the perfect time. There have been so many other times where I asked God to help me and be with me, and minutes later, I found myself at peace.

So the next step is to get the biopsy done. To throw a wrench in all this, my CF doctor in Columbia just retired and I am semi-without a CF doctor right now. I barely know my new pulmonologist, and even then, he barely knows much about CF outside of the lungs. I plan to call SLU tomorrow to ask about their program, because I think I need a doctor who has some CF knowledge, especially with this new weird scar tissue issue thrown into the mix. Maybe we'll stick with Mizzou to get this done, maybe I'll switch.

In the meantime, please continue to pray for me. Pray this is a whole lot of nothing and that it can be dealt with easily. Pray for strength and peace for Jarrod and I, too.

And one last thing... you know the phrase "Be kind, for everyone you know is fighting a battle you know nothing about"? Or some variation of it? This popped in my head many times. We didn't want to tell anyone until we had the news from today and a better idea of what was going on. It was a difficult conversation I didn't want to try to explain to multiple people; like ripping a bandaid off over and over again when all I'm trying to do is distract myself and live my life. I have always liked this saying, and I've always tried to be kind to everyone because of it. In light of all this, please try to be kind to everyone you meet. You just never know what is going on in another's life.