This has been a tough couple of weeks. There have certainly been bright spots of joy and blessing and baby snuggles, but the underlying sentiment has been of brokenness and healing. This brokenness is what I want to share with you today as I continue down the path of healing.
I had my biopsy last Monday afternoon and it was a difficult experience. I've been procrastinating writing this entry as I stall for time to mentally heal. The procedure was painful, the recovery immediately afterward was harsh, we had to spend the night in the hospital, and there were way too many people poking me with needles and the like. I hit my limit at about 5am when someone failed to painlessly draw blood from my hand. At once I felt that I could not possibly endure one more intervention, not one more blood draw or stranger touching or hurting me. It was too much. I've never felt that way before. Typically when it comes to dealing with my health issues, I can accept whatever interventions are needed with their associated risks and mentally conquer it before the plan even begins. Not this time. I couldn't really get on board with how risky this procedure was going to be, especially only weeks after Carley Jean arrived. But we needed the information that the biopsy would provide- ASPS doesn't typically spread as quickly as this tumor did, so my oncologist was worried it could be something more aggressive and wanted to make sure we were going with the appropriate treatment. I understand that. There's a dichotomy of understanding in my mind since I am both the patient and a provider. When I am sitting in the provider seat, I know that we need the biopsy in order to make the best medical decision. But when I am sitting in the patient seat, I can't stop thinking about the risks. It created a difficult starting point for this procedure, and the pain and difficulty made for a difficult recovery. Overall- bad experience. I say all this to be transparent, not for your pity. I want you to know the good and faith-filled sentiments, but I would be painting an incomplete picture if I did not also tell you about the dreary and depressing moments as well. It's a roller coaster of joy and sadness around here with ups and downs lasting minutes or lasting weeks. I think everyone is on a roller coaster of some sort, so maybe you can identify.
Disclaimer: medical details ahead. Some of you have wanted to know and some have not... If you fall into the latter category, skip to the next paragraph (like choose your own adventure!! I should try that on here sometime!) It was in the cardiac cath lab, so the procedure was similar to placing a heart stent. I was put under conscious sedation using a pain medicine and a medicine to make me loopy so I wouldn't remember the whole thing, like what they use for a colonoscopy. They used the right femoral artery in the leg/groin area as the insertion point and threaded a catheter and an instrument with little pinchers on the end into the left ventricle to take a bite out of the tumor. Problem was the instruments they needed to use were made for a much larger person and by the nature of the procedure, there is a lot of tugging and pulling. Painful. They were able to get three tissue samples during the biopsy. John and I stayed overnight while my mom kept Carley Jean, and we went home around lunch the next day.
We got the results a couple days later: the three samples were all heart tissue. They did not get any samples of the tumor during the biopsy.
That's right. We still don't know what it is.
Unbelievably frustrating. All that for nothing. And a couple days later and I was still hurting pretty bad. It was like the 5am moment all over again, feeling completely overwhelmed and just plain depressed. Now, this is not the worst possibility by any means. In fact, I don't know what a "good" result would have been. A benign diagnosis would typically mean "great, just take it out." But because of my other surgeries and possibly the depth of the mass, we can't just take it out. And there are no chemo-type therapies for a benign growth, so there wouldn't be a plausible treatment option for a benign growth. And while "benign" means it won't spread, it does not mean that it won't grow. A diagnosis of a more aggressive sarcoma wouldn't be good- that means more aggressive treatment. So maybe the best scenario in my mind was a diagnosis of ASPS since we had a treatment plan that I was ready for. But the biopsy didn't say any of those things, it said nothing. So now I have an extra week of pain and recovery. See, it's been a hard week.
I talked to my oncologist the next day. I really like her. She was very disappointed with us about the biopsy and has always been sympathetic to my hesitancy to have the biopsy in the first place. She said that she did not think we needed to do another biopsy right now (biiiiiiiig sigh of relief!) since it isn't growing. Since the two other masses are gone and the main mass is the same size, there is less concern that it could be something more aggressive. And since it spread before, it is unlikely that it is benign. So the way it is behaving NOW, it is reasonable to assume that it is ASPS. She said that even if the biopsy had come back as ASPS, she would not be recommending treatment right now. There are a couple cardiac risks associated with the medication we would use, and she feels that it is not worth having those side effects to treat a tumor that isn't growing. She said that if it grows slowly in the future like is characteristic of ASPS, then we will start the treatment at that time. But if it grows quickly or uncharacteristically, we will have to biopsy again using another method similar to the first.
So that means that for now we are going to just watch it. I am going to have an echo in a couple of weeks, and then switch to echoes every 3 months after that. And if it grows, we will start treatment then. I think this is a good plan. It allows me to keep the quality of life I have right now without the unknown side effects that would come with treatment. It is reasonable to not treat it if it isn't growing.
I am just having a hard time getting my mind around it. I feel like I am still stuck on the last step because recovering from the painful part of the last intervention is holding me back, keeping me from moving forward to the next one. And it's difficult to know what I am moving to, since it sounds like the next step is more waiting. But an easier kind of waiting since I'm not pregnant and we've watched the tumor not grow for 5 months. Looking into the future is frustrating and confusing because I am not certain what I am looking towards. There are a few options at this point; it all boils down to whether I will live in fear of the cancer growing or live in reckless abandon for the moment I have. That is a difficult decision. So I don't know what I am going to really do next. And for now that is okay with me.
Thinking about the past is exhausting and thinking about the future is confusing. But when I think about where I am in this moment, I am truly content. Sitting here in my living room with my sweet baby in my lap with the window open to a beautiful spring day- I am content in this moment. So my plan for now is to enjoy these days that God has given me with this sweet little baby girl and take things one step at a time. THAT sounds like a great plan to me!!
In about 2 weeks I will have an echo to monitor for tumor growth. If the tumor is the same size, then the next echo won't be for another three months. Please pray for me and John as we begin another period of waiting that it can be one of joy. I can't tell you what it means to have the overwhelming support that you have shown to us. It means everything and has made all the difference.
Since you've put up with the tough times above, I will reward you with pictures. We had Carley Jean's newborn/1 month pictures taken with my college friend Jarrod Turbeville who took some AMAZING pictures of our family!! Here are some to bring you joy, and there are more here on his blog. Thanks, Jarrod!!