Update

That’s More Like It

Last week, we had an appointment with Lori’s new oncologist at our local hospital, Dr. Marinella. He seemed very knowledgeable, and he knew Lori’s history well. His recommendation was to stay on the Cisplatin, but he also wanted her to visit a local radiation doc to look at her brain metastases again. That was great news to us because we had all but given up hope on her being well enough again to even consider getting that treatment. She has really been looking well lately, and Dr. M was actually surprised by her condition when he met her. He told us that he didn’t know what he would see at this initial appointment, but he expected much worse after reviewing her discharge papers from IU (she was in such bad shape). Oh, and he specifically remarked about how amazed he was that he had a patient who had been seen by so many popular oncologists.

His quote was “I can’t believe I’m seeing a patient who was seen by Schneider, Burstein (Dana Farber), and Carey (UNC)”. He joked that the next oncologist will be amazed that she was seen by him. It was funny, and while it may seem a bit alarming, it was just in jest. He is very confident in his abilities to treat breast cancer, and we feel good being here with him. It’s true he’s no Dr. S, but he’s a good man and a more than capable oncologist. It was also nice to reflect on how remarkable her docs have been. It really was an all-star lineup. I was thinking recently that I don’t know how much Schneider makes for his salary at IU, but whatever it is, he doesn’t make enough.

Anyhow, Dr M. did a brief examination then set her up with follow-on appointments for a PET SCAN, brain MRI, chemo infusion date, and a check-in with a local pain Dr. The first follow-on was set for early the next week with the radiologist.

The radiology appointment was set for this past Tuesday. That morning, Lori and I both went to meet the radiologist (Dr. Hale) to see what he thought about the brain radiology option. He was awesome. Dr H. began by describing all of the different kinds of precision brain radiation options including gamma knife and true beam radiation. He said his clinic (along with Ohio St and Cincy) had one of the most advanced machines out there for precision brain radiation, and we were fairly impressed by his presentation. Lori loves detailed descriptions, particularly of medical stuff, so she loved it. He mentioned that he came to work in the field of cancer radiation because his dad got cancer when he was a young doctor. That experience guided him towards a career treating cancer. I took note of yet another Rad/Onc who was in the business because of a close personal connection. It seems to be the case with nearly all of them.

After he finished explaining the options, he said that he wanted to rush the schedulers to get Lori a brain MRI so they could quickly act with the radiation. Finally someone was eager to rush a treatment!! We loved IU, but due to their scheduling backups, Lori went for 47 days without treatment at one point last month. Dr H wanted to make sure he was ready for the brain radiation during the natural break in her chemo cycle, so he rushed the process.

After all of the medical talk, he then sat back in his chair and said he wanted to tell Lori about his dad. He started his story by saying that he believes miracles can and do sometimes happen. When his dad had gotten sick, he was diagnosed with a cancer in his kidney, and it soon spread to other areas in his body to include extensive lesions on his lungs. Although a prognosis wasn’t given, Dr H. said that one would normally live approx 6 months based on his diagnosis/condition. He guided his dad along through his treatments (not a cancer-related Dr yet but still the best person to do it). Against his dad’s oncologist’s recommendation, they elected to have his kidney surgically removed. Luckily, that brought instant pain relief, but the cancer was still spreading. They then tried a trial drug which was no longer in the trial phase but was available for use. It wasn’t an ideal option, but they tried it and surprisingly, it worked well. Much of the cancer cleared but there were still spots on each lung and the cancer had spread to his chest area as well. Again, his oncologist (who was from Johns Hopkins and they had considered him a “cancer god”) recommended they not pursue any further treatment. Dr. H insisted instead that his dad try a risky radiation. During follow-up scans, they saw the lungs and chest both cleared. Dr H then said that he was just talking to his dad about that recently. It was 18 years ago, and his dad is still cancer-free today. Now, he didn’t have metastatic breast cancer (which is special and overall a worse diagnosis) but his dad’s scenario was very bad, and it’s miraculous that he lived more than a year let-alone 18 years and counting! Lori felt like she really connected with Dr. H and that he was reaching out to her to give her hope and more motivation to keep trying treatments even when things seem bleak. He finished up with us then left us with the schedulers to get the brain MRI setup.

The schedulers worked hard and found a way to slip her in for a next-day brain MRI. We loved to see them move quickly and to be so motivated to make exceptions to normal scheduling restrictions to help Lori. So, the next day she went to her MRI.

Today, we got the results of that MRI. All clear. There are no lesions anywhere on her brain. Her chemo doesn’t affect the brain (hence the prior necessity of surgery), so what then?

See now that’s more like it! Continue to pray for full healing.

“the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart” – Hebrews 4:12

2 Comments

  1. Lori,
    Did you every have breast surgery?

    How long after (or during) baby #3 pregnancy were you concerned or diagnosed?

    • Carol, I haven’t seen you for such a long time, and I miss you! Hope you are doing well.

      I did not have surgery. Check out the What We’ve Learned page on the site for the article Why No Mastectomy for an explanation of the breast surgery thing. Bottom line, the surgery wouldn’t have helped my prognosis and could have caused some unnecessary complications and delays in treatment.

      I first noticed a lump approx 3 months after baby #2 was born but it went away. I dismissed it as milk duct related (and it probably was). I had first noticed a breast lump again in January 2014. I assumed wrongly that it was the same phenomena as before with baby #2. I was diagnosed when #3 was just a couple of weeks shy of 12 months old (March 2014). don’t know when my tumor actually first formed. It was masked heavily by transitional breast density with all of the breastfeeding. Could have been before #3 was born I suppose. Or maybe after while breastfeeding. We’ll never know.

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