About Me

In November 2013, one month before my 55th birthday, I was diagnosed with Stage III soft tissue sarcoma, specifically leiomyosarcoma.  My tumor was approximately 9 cm x 7 cm x 8 cm and was located in the vastus medialus, the muscle in my lower inner thigh near the knee.  Fortunately, although this cancer is rare, Roswell Park Cancer Institute, a hospital within 60 miles of my home, has a specialty unit.  My treatment plan was five weeks of radiation, followed by a healing period and then surgery.   The surgery was more than 6 hours long and more than half of my muscle had to be removed with the tumor.  The tumor was very close to the femur and major artery so, in some places, the surgeon was able to remove only a 1 mm margin surrounding the tumor rather than the optimal 2 cm.  The pathology report has shown clear margins nonetheless.  I was in the hospital for a week and recovered at home for another four.  I completed four rounds of the AIM regiment of chemo, which required a five-day stay in the hospital each time.  I’ve been told that there is a 20% chance of the cancer returning to the same spot and 35% chance of it recurring somewhere else; I say there’s an 65 to 80% chance it won’t.  For now, I’m cancer-free and intend to stay that way.

Although I think it’s important to share the medical details of my cancer, they do not define me.  Who I really am is a college professor, the mother of two, and grandmother of the most beautiful little boy in the world (grandmothers are allowed to brag!).  Originally from West Virginia, I moved to Buffalo, N.Y., in 1982 to work in radio news, later switching to the field of public relations.  After a long and successful career, I joined the communication faculty at the State University of New York at Fredonia to teach public relations and have been there for 12 years now.  It’s a job I look forward to going to every day.

My hobbies are taking road trips, especially Route 66, and writing about roadside attractions.

Update, March 17, 2015: My cancer has returned and spread to both lungs. A spot the doctors have been monitoring since the beginning of this journey appeared slightly bigger on December’s CT scan; however, they said they weren’t concerned — yet. This month’s scan showed it had grown from .6 cm to .7 cm and was now accompanied by 8 to 10 other nodules. The fact that the cancer returned in less than year is not a good sign. I’ve been told this is an “incurable, but treatable” condition and been given a life expectancy of 18 to 20 months. Because the tumors appear to be slow growing, my oncologist is comfortable with waiting before starting any treatment, although my next CT scan will be in two months rather than the usual three.

Update, July 20, 2015: In April, I was fortunate enough to meet with a sarcoma specialist at Memorial Sloan Kettering Cancer Center in New York City, who confirmed the March diagnosis, said I had been getting excellent care at Roswell, and agreed with the options my Roswell medical team had discussed with me. A CT scan in May showed the lung tumors were growing, albeit slowly, and there were more. Although doctors were sure the tumors were sarcoma, a biopsy was necessary to confirm the diagnosis. The tumors were too small for a needle biopsy, so, in June, I underwent lung resection surgery. The surgeon removed three nodules, two of which were sarcoma. A follow-up CT scan in July showed the tumors were continuing to grow, but there were no new ones. Chemo will start at the end of the month. This time, I will be on Gemzar and Taxotere. Fortunately, this chemo will be outpatient so I won’t have to go in the hospital for five days each time like the last one.

Update, Sept. 12, 2015: The chemo never really got off the ground. The regimen calls for Gemzar on day 1 and Gemzar and Taxotere on day 8. Then I get a week off. I received my first dose of Gemzar on July 29 and all went well — at least I felt like it did. When I went back on day 8, I was rejected because my bloodwork showed the Gemzar had caused a high level of AST, an enzyme that can damage the liver. The following week, I was given a reduced dosage of Gemzar, but no Taxotere because now my platelets were too low. Then it was time for my scheduled week off.  The second cycle started on August 26; I received my dose of Gemzar. The following week, the regimen was stopped. My AST level was dangerously high and my neutrophil white blood cell count was dangerously low, almost enough to be hospitalized because it would be hard for me to fight infection. I was sent home to rest for three weeks and allow my body time to recover (although I feel fine, just a bit tired).

Update, Oct. 28, 2015: The three weeks off did my body good and my blood levels returned to normal, so it was time to talk options again. The oncologist felt that since my body didn’t handle the last chemo combination, it probably wouldn’t handle the next one in line, drugs that also attack the cells. Instead, he suggested targeted chemo, which, if I understand correctly, affects the blood vessels feeding the tumor.  I would starting taking a daily pill called Pazopanib, or Votrient. At the same time, a spot opened up in a Phase II clinical trial at Roswell Park that was combining this drug with a drug referred to as TRC105, which is infused. The fact that a spot became available was extremely fortunate because all of them had been taken (only 80 patients were accepted nationwide and 8-10 of those were at Roswell). I began the trial last week. Fingers crossed . . .

Update, June 1, 2016:  At the time of my last update, I had just started a clinical trial combining an approved chemo drug, Pazopanib, with an experimental one, TRC105. The purpose of the trial was to see if the experimental drug would increase the efficacy of the approved one. In my case, it worked – for a while. After two months, my tumors had shrunk, overall, by about 25 percent. One of the biggest tumors was shrunk in half. However, by that time, the drugs were starting to take their toll on my body. By late December, I had bloody noses, mouth sores, extreme fatigue, and nausea. However, the worst side effect was one I couldn’t feel – low platelets. According to clinical trial protocol, the trial had to be suspended every time my platelets went below 50,000 (the normal range is between 150,000 and 450,000; low platelets decrease the body’s ability to stop bleeding). When the trial would resume, the dosage would be reduced. This dance went on until late May when the dosage could not be reduced anymore. My body was pretty battered by then, so between that and the fact that a CT scan showed that the tumors began growing once I went off 100 percent dosage, my oncologist said it was time for a break. I have high praise for the trial and really believe it gave me an extra seven months (plus it changed my hair to pure white, which I really liked!).

Update, Sept. 8, 2016: After more than a three-month hiatus from treatment, it’s probably no surprise that the cancer has progressed. Several tumors are now at 2cm, a “line in the sand” if you will. When they get bigger than that, symptoms can start. I have experienced some already, but they have been short-lived. Our goal now is to stabilize the tumors so they don’t get bigger and to stave off new ones. I am on the waiting list of a couple clinical trials focused on immunotherapy, which the oncologist says is my best option right now, but they have yet to open and I’m at the stage where we can’t wait any longer to do something. I’ve started a new chemo drug, Yondelis (trabectedin), that was approved by the FDA less than a year ago and has had some success in Europe. It is one of the few drugs approved for my specific type of cancer, leiomyosarcoma. The regimen is a 24-hour in-patient infusion every three weeks. My oncologist has started me on the lowest dose and, so far, no side effects after cycle one.

Update, Oct. 28, 2016:  I did experience side effects after the second cycle of trabectedin — something the doctors call delayed nausea, which led to a severe episode of dehydration. At my next doctor’s appointment, I received a poor bloodwork report. I had low platelets, low hemoglobin, low white blood cell count, and low potassium. As a result, I had a platelet transfusion, fluids and potassium.  Meanwhile, an enzyme in my kidneys was too high, a lingering affect from the dehydration.  My condition was such that, once again, chemo had to be postponed, this time for two weeks. In the meantime, I had my two-month CT scan; it was a mixed bag, but, overall, my condition is labeled as stable. The three largest tumors in my lungs continue to grow, but all others stayed the same. The cancer is starting to spread to other places. I have tumors in a kidney, abdominal wall, and scalp — all are small at this point. I feel absolutely fine and, so far, am not experiencing any symptoms from the cancer itself. I am very weak from the chemo though. Meanwhile, Roswell Park Cancer Institute, where I am being treated, has just announced a clinical trial of a new drug, CIMAvax-EGF, an immunotherapy drug developed in Cuba for advanced lung cancer patients. Fingers crossed!

Update, Dec. 16, 2016:  When we left off, I was having trouble with the latest chemo treatment and, because of that, it was never resumed. My cancer institute had also just announced a clinical trial on a drug that has shown great success in Cuba; however, I did not qualify for the trial. Meanwhile, my platelets continued to be a problem and the cancer continued to spread. In November, I started exhibiting symptoms from the cancer – wheezing and coughing. A CT scan showed that a tumor was almost entirely blocking one bronchial tube. It was not a matter of if my lung would collapse, but when. I was scheduled for a bronchoscopy to put a stent in the tube to allow air through. However, prior to the surgery, a coughing fit produced the tumor. Seriously! Read this post for the details. I still had the surgery, during which the stump of the tumor was removed. No stent was needed.

Update, Jan. 8, 2017:  After the bronchoscopy, my doctors starting focusing on why my platelets were remaining low — usually floating between 70 and 85. They would need to be a minimum of 100 to qualify for any clinical trial. So, bottom line, no treatment was in sight. I underwent a bone marrow biopsy, which showed that platelets were being produced, although sluggishly. Attention then turned to my spleen, which under certain circumstances can attack platelets. No explanation was found there, either. The cancer has picked up speed and some tumors are getting pretty big, especially the one on my head, which I’m starting to have trouble disguising. I don’t seem to be suffering any symptoms, though, other than an annoying cough, which may not even be related to the cancer.  At this point, I honestly don’t think my doctors know what to do for me.

Update, Feb. 4, 2017:  At long last, I have finally started a new drug! It’s been nine months and I’ve had only two chemo treatments. My platelets continue to be low, keeping me from participating in any clinical trial. Without any options, my doctors applied for “compassionate use” from a pharmaceutical company conducting a trial that my doctors felt might help.  CNBC explains that “compassionate use” is “a way for terminally ill or otherwise optionless patients to access experimental drugs outside of clinical trials. For a patient to receive a medicine on that basis, she must have the support of her physician, the consent of the Food and Drug Administration and a pharmaceutical company willing to supply the drug.” Not an easy task.  However, I’m happy to announce that my doctors were successful!  Yesterday, I began treatment with pembrolizumab. You most likely have heard about this drug, even if not by name. It was featured in the news last year as the drug that miraculously cured former President Jimmy Carter. It’s also been advertised a lot on TV lately under the brand name Keytruda®. The FDA has approved the drug for various cancers, but not the one I have. I’ll undergo treatments every three weeks.

Update, April 14, 2017:  In early February, my condition unfortunately started to worsen. I was able to receive three rounds of pembrolizumab, to no avail. The cancer began spreading quickly and aggressively. Fifteen percent of one lung collapsed. Although feeling the decline, I continued to work full time until the doctors told me I needed to take three weeks off to rest. That was on March 21 and a couple ER visits ago. My latest visit has turned into a (so far) week-long stay at my cancer institute, during which time doctors have determined there is no more they can do. For starters, one lung is now completely closed and the other one is only 25 percent open, a condition putting great strain on my heart. Then there is the continued cancer spread. I will most likely be in the hospital another week as I get some radiation therapy for cancer that has entered the bone and a few other places, for pain management purposes only. After that, I’ll be going into Hospice. And thus ends my cancer journey, but not my story . . .