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March 19, 2018

Monday before last, I met the new oncologist. Jonathan and I both really liked him. He discussed different scenarios based on what we might find in the biopsy later that week, but he was mostly in data gathering mode. He ordered blood work and a PET scan. He also said I need to switch to Tamoxifen since the hormone blocker I’m on is generally used for postmenopausal women.

There are two things that still stand out from that appointment that we really like. First, he gave me his cell phone number, and when I called/text him the next day with a question, he replied! And second, I was asking him about options for monitoring and he said, though it seems old school, one of the most important ways he monitors his patients is simply to see them and see how they are doing/feeling. It tells me he isn’t just a doctor reading lab results and not paying attention to the human behind them.

Later that week, I talked to a friend who has recently gone through a crazy, miraculous stroke and found out that she sees the same doctor who also does hematology and really likes him. She also told me that a friend who does home health sees his patients and reported that they seem to do better than a lot of other patients she sees. All encouraging things that make me feel more comfortable trusting my health to him.

On Thursday, I had the biopsy. I went into it without stress, feeling like it would just be another routine thing, but it ended up being really unpleasant. I had to wait a long time to even get started which allowed anxiety to creep in. She did the first spot and it was fine, but when she went to the second spot, it started hurting. They numbed it more, but it still hurt. The whole procedure is unpleasant – they are using big needles to go through a small incision and then have to find each spot. Once they find it, the needle goes in which is a lot of pressure and then they stick a thing in that retrieves the tissue samples. She decided to do a lot since the second spot wasn’t a cyst like she had first assumed. It reminds me of a nail gun or something. She asked if I wanted to come back to her for the results, but we agreed that she would just send them directly to the oncologist. There was also a lot of talk regarding me “not doing systemic treatment”. Yeah, I get it – you don’t approve of what I’m doing! I cried a lot that day – some for pain, some frustration, some just feeling sad that I’m having to deal with this.

The next day I had the PET scan, which comparatively speaking, is a walk in the park. For the scan, you come in with blood sugar below 100, have some kind of radioactive stuff put in your vein, drink some barium drink and then wait an hour. The scan only takes about 15-20 minutes. The weirdest part is that they told me that for the next 24 hours I would be slightly radioactive, so out of extreme caution, I shouldn’t hold or let my children sit close to me for extended periods during that time.

PET scanners work by detecting the radiation given off by a substance injected into your arm called a radiotracer as it collects in different parts of your body. In most PET scans a radiotracer called fluorodeoxyglucose (FDG) is used, which is similar to naturally occurring glucose (a type of sugar) so your body treats it in a similar way. By analysing the areas where the radiotracer does and doesn’t build up, it’s possible to work out how well certain body functions are working and identify any abnormalities. For example, a concentration of FDG in the body’s tissues can help identify cancerous cells because cancer cells use glucose at a much faster rate than normal cells. – https://www.nhs.uk/conditions/pet-scan/

I spent the rest of the weekend getting ready to go to Haiti with a medical team from our church. I had determined not to dwell on the test results since I wouldn’t know anything until I got back anyway.

On Monday afternoon when we got back from our day’s work, I got a text message from the oncologist saying “Pet scan shows no spread of cancer to other organs.” I was so relieved and happy, and shared it with everyone.

Then, on Wednesday morning, Jonathan text me to say that he had gotten a call from the surgeon’s office trying to get in touch with me. He had called back, but somehow we had failed to give permission for them to talk to him. Over the next 24 hours, I tried calling and tried not to worry why she wanted to talk to me. I thought that since the PET scan was clear then I was fine. I finally got in touch with her on Thursday morning as we were driving to the mobile clinic village. She told me that the second spot, the .5cm one that didn’t seem like a cyst, was in fact invasive ductal carcinoma. She said she had already called my oncologist and they had discussed treatment options.

I was (and still am a little) confused as to why this wouldn’t have shown up on the PET scan. I’ve had some people explain different scenarios as to why it might be. I’ll see what the doctor says today. I was also extremely disappointed to get such good news and then feel like it had been taken back. After a little bit more time, I was able to still appreciate the good news – no spread is amazing! I think as much as it sucked to be in a car driving up a mountain in a foreign country while receiving this news, it also helped me keep perspective. I have access to all the healthcare options I could want. I don’t have to walk 4 hours to see a doctor or wait a month until the next one comes to my village. I was prayed over that day by my team and the next day by the leaders in Haiti. We know that love can’t heal cancer, but it sure helps while you’re dealing with it.

Mobile clinic in Boukan Boyer, Haiti

I was able to put it out of my mind for the most part for the rest of our time in Haiti, but we always have to come back to reality. I felt unmoored yesterday as I thought about all of this. When I got the news last week, it was just 7 months after my first diagnosis. Is this something I’m going to have to deal with every 6 months? Do we need to change our approach? I don’t know if it’s going to be part of my future, but I’m understanding more and more why women choose to have their breasts removed. What about my lymph nodes? Am I going to keep getting more and more of them taken out? One of the concerns from my last surgery was that there was only a 1mm margin on the tumor. So is this growth left from that or something new? Hopefully some of these questions will be answered today and in the days ahead. I’ll try not to wait another couple weeks to update.

Good news is so much easier to share. I continually battle worrying about how my news affects others. I know it sucks. I also know that I would want to know if it were you, so have to keep sharing.

I’ll close with a reminder to myself- when I started this process, I wondered what it meant to trust God in this. What I realized is that it isn’t trusting that there will be a certain outcome – trusting God doesn’t mean we live happily ever; it’s trusting that He is with me every step, every day. I asked for the steps to be made clear and then saw pieces fall into place. I spent the fall in treatment with peace that I was where I was supposed to be. So when I wonder now if I’ve been doing the right thing, I have to remind myself of that. And as we tackle this next bit of cancer, I have to keep asking that step by step, the way would be made plain.

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