MiriamWillits's Story

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miriam

"It's a difficult process, after 4 1/2+ years to go back and relive all the events that were set in motion at that time in my life. It's difficult because I'm not one to like to regurgitate so much, not because I find it so emotionally painful, but because I believe that there are many people out there struggling with much worse in their lives. I may have Stage IV cancer, but I'm alive, functioning well, and trust that God walks me through all the tough days and good days of my life. I trust that I can acknowledge that I might have difficult times ahead, but I know He will be my comfort, the source of daily grace for living, and my hope of heaven.

"But in order to possibly be of encouragement in anyway I can, I'll try and start at the beginning. In October 2010, I noticed that I was awfully tired, unusually so. Since sometimes I couldn't get a good night's sleep due to some sleep issues since having children, I just chalked it up to poor sleep and kept at my normal busy schedule. I had a son and daughter in college (same college) in western Pa., one at home I was still home-schooling (I home-schooled them all from the time they were 4-5 years old), and was very busy with a large choir that I helped administrate. I also did my husband's business paperwork. I probably shouldn't have ignored the fatigue; this kind of tiredness was the type where I had to find a bench while grocery shopping, and that wasn't like me as I went to the gym regularly & wasn't prone to resting during the day. A trip to a petting zoo for pumpkins left me sitting down midway and an evening prep for a fundraiser forced me to the sofa. I also noticed that once it was late October/early November, I was finding that digestion seemed a bit off as some meals made me have some pain afterward. I needed to go and see my primary physician to renew cholesterol and high blood pressure meds anyway, so I mentioned it to her in early November at my 6-month checkup. She immediately took a good look at my labs and saw that my alkaline phosphatase numbers were way above the normal levels. She suggested that it could be a gall bladder issue and sent me to a surgeon. Bringing with me the lab results, he looked at them and concluded that the numbers were even too high for simple gall bladder surgery, consulted back to my primary and I was told to quickly have a mammogram. This was November 2010; the previous January of 2010, the mammogram I had scheduled had to be cancelled due to the machine being broken. I never did reschedule it, figuring I was alright, no reason to worry and the previous one had shown nothing. So, this late mammogram seemed to indicate, initially, that some sort of breast cancer was present and needed further (CT scan) study. While I was going from one test to the other, I really never imagined anything too serious. But I do remember realizing that I needed the written report to accompany one of my scans on a disc, so went back and picked that one up. I remember that I was driving to Wawa to get the car filled with gas and reading the report while sitting in the car, and as the news sunk in that the report's findings were not good, calling my sister and breaking down on the phone. The CT scan indicated a lot of tumor in the head of my pancreas, so Fox Chase Cancer Center (FCCC) initially diagnosed my cancer as pancreatic.

"At that visit to the oncologist's, I had my husband, my sister, and my pastor with me, all there in the office. When they said pancreatic cancer, I remember my husband's reaction. My husband is a quiet, unassuming sort of good guy who will do anything for me; I just sometimes have to explain to him what I need (that took me more than a few years to learn). He started to cry there in the office. It was a bit hard to absorb because it seemed that they were telling me that I only had a small amount of time, perhaps 3-6 months. My pastor prayed with us, helping us all to calm down and try to figure out what was next. After a couple more tests, including a liver biopsy, they realized it was an aggressive (HER2+) form of breast cancer that had already metastasized into my liver. There was so much tumor that it had spilled over into the head of the pancreas, making diagnosis confusing. Diagnosis was HER2+, ER+, PR-. I had only just turned 50 previous several months before. I remember my primary being awfully glad it was "only" breast cancer. At that time, I didn't quite understand what she meant. Cancer was bad, no matter what, I thought. Nobody in my family had a prior history with breast cancer, so it wasn't something I was expecting.

"By the time a firm diagnosis was made, the tumor accumulation in my liver was snowballing. I could not sit up for long periods of time due to my mid-section becoming so distended from tumors. I couldn't walk much without needing a wheelchair. In order to shop, I now needed one of those motorized carts. I was out of breath, in some pain, exhausted, and could barely digest anything (fats don't digest when the liver is compromised). I lost over 30 pounds in about a month, while getting a port installed and meeting the breast oncologist at FCCC. We weren't even sure if the chemotherapy they planned to try would work, and I was not doing well.

"The day I started Taxol with Herceptin was December 13th, 2010. Again, I had my posse with me: husband, sister and pastor. My sister is older than me, very protective, and kept insisting I ride in a wheelchair, for which protectiveness I was very thankful, as I needed it. That first day was long, and my infusion nurse, John, at FCCC was wonderful: gentle, patient and willing to take all sorts of time with us. Premenopausal symptoms had only recently started flirting with me. That day, I was there for probably 7 or 8 hours, and my family and friends stayed with me the entire time, my pastor praying with us (in fact, my pastor continued to come with us on Mondays, his day off, for a series of months when we would see the MO until I finally told him that it was too much for him to keep coming -- he and his family continue to faithfully pray for me every day, along with most of my church and friends). After that, I went every Monday to get the same meds for 56 straight weeks. Finally, after periodic CT scans, they concluded that things were somewhat stable, though there were still tumors in my liver. The Taxol had gotten a lot of them, though. I felt worlds better, though I was tired. In February 2012, I went on Herceptin only every 3 weeks and had to take Tamoxifen on a daily basis. Unfortunately, after a couple of CT scans, a couple of clots showed up in my lungs and I had to inject Enoxaparin, 100 ml, twice a day until they could confirm that I was truly post menopausal, at which time my MO switched me to Aromasin. That was in December of 2012.

"After about a year of Aromasin, in February of 2014, the Aromasin wasn't working as well so we switched to Faslodex (shots) but by May 2014, this had failed as well. By May of 2014, skin metastasis was starting to appear, and it was determined I needed to go back on chemotherapy, that the targeted therapy Herceptin wasn't sufficient on its own. My first MO at FCCC had explained to me that, periodically, the meds would need to be tweaked, and chemo reintroduced to stabilize my cancer.

"Our family had planned a trip to the UK (my husband and all three grown children ages 25, 23 and 19) and we told FCCC that we had to get this out of the way first. So, we went on our trip for a couple of weeks, and it was a good reprieve.

"On our return I went back on (this time) Taxotere, along with Herceptin and now Perjeta (Pertuzamab) had been added to the combo. After 1 treatment, I changed MO's to find one more interactive. New doc is wonderful, and insists that I exercise daily and drink more water than I had been doing. In addition, my CT scan in October 2014 showed that not only had the breast tumor and the obvious skin metastasis shrunk, but more tumors in my liver had shrunk as well. I had 8 treatments of Taxotere over a period of 6 months, July 2014 to late January 2015. Side effects were troublesome (peripheral neuropathy, foliculitis, 1 nail infection, intestinal tract drama), but my MO and my husband and I were satisfied with the results.

"Unfortunately, my most recent CT Scan shows new small growth of the lump in my breast. The good news is that the liver's tumors appear stable. The difficult aspects of this are that my MO doesn't want to start anything yet, because of such recent chemo. Another CT scan next month will tell us what to do next. Perhaps we can wait to resume Taxotere until after the holidays.

"I'm still here, and for that I'm thankful. Because living with metastatic cancer is my new normal, and because of God's grace to get through it, I manage fine. Wish I had more energy, but there are worse things than feeling tired. None of us know the day we will leave this world, so one learns to be grateful for each day and that's not a bad thing to learn."

-- MiriamWillits, 5 years metastatic

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