Enzaime Health Stories

Okay, it's May 31 and I haven't updated my blog since right after the amazing 5K event. I didn't want to miss another opportunity to post in the month of May, so here goes. This will be short, since there is not a lot of news about myself to post. My visit to the Farber last week went well, as I still seem to be in remission, thank goodness. However, as I posted last month, there are some indicators that bother me a bit. I already mentioned the increase in my bone marrow biopsy plasma cell count from 6% to 8% over the last year, but there are a couple of other things that are beginning to bother me. First of all, my red blood cell (RBC) counts are dropping. My hematocrit (HCT) dropped from 45.9 to 41.2 since last month. It's still above the minimum level of 37.1, but I don't like the trend. It's been really high since my iron infusion about a year and a half ago, but it's going in the wrong direction now. I had stopped taking iron pills since my last prescri

https://www.youtube.com/watch?v=fHF4553vll8 "We got an appointment with Dr. Kutikov the next morning. I was very impressed with that." At 54, Peggy McCaughey is counting her blessings. In addition to her husband, Hugh, and their two daughters, Hannah Rose and Grace Kelly, she feels blessed to be alive. "I am overjoyed to share my experience about Fox Chase Cancer Center,” she says. Peggy's journey began with heavy menstrual periods, losing hair and back pain. She shared her concerns with her gynecologist whom suggested hormone therapy. “I could not tolerate it,” Peggy recalls. After several D&C procedures, Peggy developed anemia. “Finally, my gynecologist agreed to a hysterectomy in 2010," recalls Peggy, who was only 49 at the time. The pathology was positive for high grade endometrial stromal sarcoma confined to the uterus wall. My gynecologist referred me to an oncologist at community hospital. That oncologist told me not to worry and return in six months

It's been many moons since I last blogged. Actually, there has been only one full moon since my last blog...August 18th, but there have been two new moons...August 2 and September 1. So maybe it has been two moons since I last blogged. Whatever. Who's counting? Anyway, it's been a really tough month, so I haven't been up to blogging about it until now. I'm very sorry to report that our sister-in-law, Kathy, succumbed to lung cancer. Her passing was a devastating shock to all of us who loved her. It's almost inconceivable that this vibrant, beautiful, amazing woman was cut down by this devastating disease at such an early age. Our whole family is reeling from this. She was loved by so many and will be missed by so many. It doesn't seem fair, but I guess life isn't always fair. We will mourn her forever. She has left a deep hole in our hearts that will never heal. As much as Gretchen doesn't want me to talk about her, I think I have to. After this trag

In the summer of 1974, at the young age of 19, Ray Beckler developed severe hemorrhoids. His family doctor took one look and sent him to a surgeon. For years post surgery Ray's symptoms remained. "The bleeding never stopped. I'd have fecal occult tests, but the blood was always attributed to an internal hemorrhoid based on a sigmoidoscopy," Ray explains. To improve his digestive health, Ray limited meat and potatoes and introduced more fish, fresh vegetables, whole grains, low fat and fresh fruit into his diet . . . (and a little ice cream!). By the time Ray was 44 his symptoms worsened. "My doctor ordered a sigmoidoscopy which again found nothing but a bleeding hemorrhoid" recalls Ray. "My GI told me I was too young for it to be cancer. Of course, that's what I wanted to hear and didn't pursue a second opinion." "Three years later, in 2002 at the age of 47, on a diving trip with my oldest son in the Florida Keys, I developed a perirec

Today I have a guest blogger, my son, Max Rosen. Going to camp for the first time is very tough, especially when you’re 15 years old, but for me it was the best experience ever. On Sunday morning I checked in to camp, and seeing all these campers that I have never met before was quite nerve racking. Luckily a counselor introduced me to some campers my age, and they introduced me to all of the teen campers, and just like that we were all friends. Camp Kesem helps you deal with the cancer in your life, an escape, the closest thing to a normal camp. I was part of the teen program, so my rotations were different than the younger units. We did activities like hiking and playing sports. The camp we were at, Camp Wekeela in Hartford, Maine, is a beautiful camp. The camp has a soccer field, beach volleyball court, tennis courts, and a performing arts center. Many times during cabin time, our free time, we would play ultimate frisbee, tether ball, or soccer, that included everyone from the youn

This rhetorical critique on the topic of social change was written by my daughter Michaela, for her communications class at George Washington University. On March 24, 2015 Angelina Jolie published an op-ed in the NY Times called Diary of a Surgery. Her op-ed shared with the world an update since her double mastectomy two years ago. This time, she shared her thoughts and medical opinion on her laparoscopic bilateral salpingooophorectomy: the removal of the ovaries. News outlets picked up her story like rapid fire; news stations, other papers, and radio hosts alike were all talking about it. The dialogue surrounding her op-ed continues to be mixed. One audience recognizes the social change that she is trying to bring about. For decades, talking about cancer, especially breast cancer, was taboo. Jolie, in my opinion, is attempting to break down this stigma and bring about social change so that women can speak freely about their bodies to bring about body positivity. However, another audi

Sometimes being positive is not enough. My family, friends and I had high hopes that the medication I was receiving in the Phase 1 Clinical Trial would help stop the the progression of my bone and liver mets. Unfortunately, it did not. After being on the same medication for a year, my bone and liver mets remained stable. Then, in January of this year, my scans showed four new lesions on my liver. We were all thrilled when there was an opening in a clinical trial that I was able to participate in. There was HOPE. Hope that these experimental drugs would work. I went through two cycles on this trial, one cycle per month, or two months time. After the two cycles, it was time to have scans. Scans consisted of chest, abdomen, and pelvic CT scans, and a bone scan. I had the scans last Tuesday. The two days between scans and results can feel like an eternity, because so much hinges on those results. Mark and I met with Dr. T, who is the oncologist for the clinical trial, on Thursday. After ex

It seems whenever I come back from vacation, I am due for my scans. The beginning of this year was no different. After enjoying a spactacular New Year’s Eve cruise with my family and siblings, it was time for CT and bone scans upon my return. I was not too concerned about getting the scan results. I had been receiving the same treatment for a year, and even though my tumor markers were rising, my previous scans looked good. More importantly, I had been feeling well. Imagine my disappointment when I was told that the scans showed progression concerning my liver. I was told the existing lesions on my liver were growing in size, and more lesions had developed. It was time to receive a new treatment. Thankfully, a spot opened up in a phase 1 clinical trial, and I was able to participate in it. The treatment in this trial consisted of two oral chemotherapies. I took these drugs for two months and then was scanned. We were again disappointed by the news we received. Progression continued. On

It's been many moons since I last blogged. Actually, there has been only one full moon since my last blog...August 18th, but there have been two new moons...August 2 and September 1. So maybe it has been two moons since I last blogged. Whatever. Who's counting? Anyway, it's been a really tough month, so I haven't been up to blogging about it until now. I'm very sorry to report that our sister-in-law, Kathy, succumbed to lung cancer. Her passing was a devastating shock to all of us who loved her. It's almost inconceivable that this vibrant, beautiful, amazing woman was cut down by this devastating disease at such an early age. Our whole family is reeling from this. She was loved by so many and will be missed by so many. It doesn't seem fair, but I guess life isn't always fair. We will mourn her forever. She has left a deep hole in our hearts that will never heal. As much as Gretchen doesn't want me to talk about her, I think I have to. After this trag

An American tourist visiting London tries to cross the street. Instinctively, he looks to the left first. Finding it clear, he steps off the curb, looks to the right, and is immediately flattened by one of those double-decker buses they have over there. Whoops! I've been feeling a little bit like that lately. For a long time now, my multiple myeloma journey has been sailing along on cruise control. My numbers have been fine with no evidence of monoclonal gammopathy. I am now on Cycle 54 of my Revlimid maintenance therapy. The only glitch was a reduced iron level in 2014 causing some anemia. I received an iron infusion which remedied the problem. Then this happened again this year, which I mentioned in my last post. I received another iron infusion in September, which has again boosted my red blood cell counts back up to normal. So all is good, right? As I metaphorically look to the left, I see an undisturbed 4 plus years of my MM in complete remission. The road is clear. However, a

I'm feeling particularly stupid tonight. Duh! With good reason, as you are about to learn. I will share with you the embarrassment of my actions this evening. As a prologue, I'm sure we haven't had a working DVD player for quite some time, since we don't play DVDs these days any more. I assumed that we had disposed of our old DVD player a while ago. Gretchen has a DVD that she has wanted to play for a while now. So I recently ordered a Sony BluRay player from Amazon, which was sitting unopened in our media cabinet. She has a guest visiting this evening, and they both wanted to watch the aforementioned DVD. She asked if I could hook up the new player. I obligingly said yes. Okay, so I unpacked the box and hooked it up to a power outlet. So far, so good. I then went to attach the HDMI cable to the TV. I assumed I had an extra HDMI outlet on the TV, because I only use HDMI1 for the cable TV and HDMI2 for the Apple TV. I never use HDMI3. I thought it was available. I was su

Hello all! I used to update this blog frequently. In those halcyon days of yore, I used to imagine that I had a legion of devoted followers, all hanging on whatever pearls of wit and wisdom I might dispense in my next blog entry. Alas, those days have passed, and I'm not quite sure why. I seem to have lost a bit of my creative edge. Some of it is due to the fact that I have been fortunate to have been in remission for a long time now, so there isn't a lot of MM news for me to share these days. I now assume that my imagined legion of followers has been reduced to a few desperate souls who might occasionally check to see if I am still alive. I apologize to all of you whom I may have disappointed by my prolonged absence. All right, so here I am to give you remaining devoted stragglers an update on what's been going on lately. Actually it's been quite a bit. View from our balcony First, let me tell you about our fabulous Christmas vacation in Puerto Rico. Our villa on the o

It has been so long since I last posted that I almost forgot how to find this blog site. I could say that it has been too long, but that would grossly understate the situation. Anyway, like a Phoenix, I have arisen from the ashes. Early arrivals at our tent The MMRF Boston 5K Run/walk was held at Carson Beach in South Boston on April 30. This was our second year for this fundraising event. Team Epic for Bill raised over $8,500 for Multiple Myeloma research! While this was a little short of last year's total, it was a very successful fundraiser, and I'm very happy and grateful that so many people contributed to this worthy cause. We had 25 participants show up to walk or run with us that day. The weather was pretty good. It didn't rain, but it was somewhat chilly. I'm very proud of myself. I walked the course in 1 hour 8 minutes, which beat my last year's time by 2 minutes. Who knows how great I might be next year? Team Epic for Bill The Boston 5K event raised over $

I don’t think I have ever met anyone like you. Sure I have met strong, inspirational people but they broke the mold with you. I wish there were more people out there like you. You exhibited incredible strength, compassion, spirit and love. I liked you the day I met you. There was just something about you. You had this presence and I could tell you were a doer. I also liked that full head of hair, red shirt and the stylish shoes and socks you were wearing. I think the turning point for our friendship was when we met for lunch.We had sushi and we talked about you getting involved as a co-chair for a patient family advisory council. We connected on this level only cancer survivors can understand. We talked about our treatments, our families and our fears that we often don’t even talk about with friends or family. You asked me if I thought about when it might be my turn again, when I might succumb to a cancer that could come back. You shared your own fears but it all felt a long way off. I

Yesterday, I did something I never thought I would do……I started this blog! When I was first diagnosed with breast cancer I thought I would write a book about my journey. For some reason, it never materialized. My daughter, who is home for the summer gave me the idea of writing a blog. She, along with my son set up this page. They did a great job! The photo header of this blog is one my son took when we were in Hawaii recently. Speaking of Hawaii….. I love to travel! There is nothing like going on vacation, and making memories with your family. Thankfully, my family also shares this interest. When I was having chemotherapy the first time, my husband said to book a cruise, our first, to help me get through the nastiness that is chemo. It was the light at the end of the tunnel. My family was joined by my younger sister and her family, and my oldest brother. It was a fantastic vacation, just what the doctor ordered! We have gone on many vacations since to celebrate happy occasions. We hav

For some of you, this post may be a little dry. However, I wanted to share my experience, process and treatments to give you an idea of what a person with metastatic breast cancer goes through every couple/few weeks. It’s referred to as “scan, treat, repeat” (Source: Metastatic Breast Cancer Network, MBCN.org) . Waiting for test results can be agony. I had a biopsy on the lump I found under my right arm pit. I didn’t think the lump was anything serious, and then I got the call. My breast surgeon said they had found a malignancy. I remember saying to her, ” I have cancer? ” she replied, “Yes, you have breast cancer.” What happens next after hearing these words? More tests of course. When you’re diagnosed with cancer, many diagnostic tests are performed and then treatments are performed. In my situation, a mammogram and ultra sound were performed. The mammogram found the original source of cancer in my right breast. The ultra sound confirmed lymph node involvement. Then the treatment beg

Some of you may know the feeling….your face starts to feel hot, the feeling spreads to your chest, and then you start to sweat. You are having a hot flash! Most women go through menopause naturally, and experience hot flashes gradually. Some women will be forced into menopause due to surgery or chemotherapy, which can bring on hot flashes instantly. Women who take medications to prevent recurrence of breast cancer have the worst hot flashes known to womankind! I know this personally, and so do many of my friends. You may have heard of the drug, Tamoxifen. This was the first drug I took after chemo to prevent a cancer recurrence. I woke up the same time every night sweating, and hot as hell. I was up for a while after having the hot flash, or what some like to call night sweats. I had a hard time falling back to sleep. During the day, I had around 50 hot flashes a day. I kid you not! I asked my oncologist to take me off Tamoxifen. I tried two different drugs known as aromatase inhibitor

13 Facts Everyone Should Know about Metastatic Breast Cancer Source: mbcn Metastatic Breast Cancer Network 1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life. 2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. 3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S. 4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life. 5. About 6% to 10% of people are Stage IV from their initial diagnosis. 6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms. 7. 20% to 30% of people initially diagnosed with early stage di

I do not know anyone who enjoys intravenous therapy. For those who have a fear of needles, this can be even more uncomfortable. Fluids, antibiotics and many other medications can and are given intravenously. One such drug, Chemotherapy, can be taken as a pill, or most often through an IV catheter. The chemotherapies that I have received have all been given intravenously. I remember the first time I saw the sign, INFUSION SUITE, where chemotherapy is given at the Dana Farber Cancer Institute in Milford, MA. You would of thought I would be enjoying a day at the Spa, given the phrase “suite”. I certainly would have preferred that. In 2010, I had a axillary dissection done on my right arm. This is fancy talk for lymph node removal. After you have this procedure done, you are no longer able to have needles injected or blood pressure taken on that arm. With the skill of my oncology nurse, I was able to get through 8 rounds of chemo with an IV on my left arm. It wasn’t easy. I have always bee

They say you always remember the date and place you were when something memorable happens….good or bad. One date I will always remember is August 10, 2010, when I got “the call”. I had a biopsy done days before, on a lump that was under my armpit, and was waiting for the results. I was not anxious at all because both my breast surgeon and I did not think it was anything to be concerned with. It was a warm summer day and Michaela, Max and I were hanging at home with Wally, of course. Late morning the telephone rang. A call that would change my life, and those who are part of it, forever. I picked up the phone in my bedroom. My [awesome] breast surgeon, Dr. X, was on the line. She told me she had the pathologist on the other line and she found a malignancy. I asked if I had cancer. Dr. X said, ” Yes, you have breast cancer.” Damn! Michaela was standing next to me. She said I was in shock. Well, who wouldn’t be? I continued to talk with Dr. X on what the next steps would be. After I hung

When Cathy Van Horn met with her Fox Chase Cancer Center team in 2012, she knew where things stood. “I understood that my cancer wasn’t going to be cured. The best we could do was to manage my cancer and keep it at bay. The longer we could stay positive and keep moving forward, the longer I’d be here.” At the time, Cathy was also a heart patient. After a cardiac ablation in April 2011 at the age of 61, tests revealed a tumor in her pelvis. “I’d been dealing with heart procedures for eight years. This, I didn’t expect. Cancer came out of the blue,” admitted Cathy. She was diagnosed with ovarian cancer that had metastasized to various places in her body. The tumors didn’t respond to regular chemotherapy and continued to grow. Referred by her primary physician to Fox Chase Cancer Center for a second opinion, Cathy met with medical oncologist Lainie Martin, MD, who took the case to the hospital’s tumor review board February 2012. She underwent surgery to remove the tumors, which persistent

One year ago my life- and the lives of those close to me- was shaken up. I’m going to bring you back to the summer of 2013. It was a busy, but exciting time. Life was great, really great. In July, Mark, Michaela, Max, and I took a family vacation to one of our favorite places: Walt Disney World. We have been visiting WDW every couple of years since Michaela was 2; it really is “The Happiest Place on Earth.” In line with tradition, both of my children thought it would be a great idea to visit our happy place before they started school; my daughter would be starting her freshman year at The George Washington University in Washington, D.C., and my son would be starting his freshman year in high school. In addition, I thought it would be a wonderful place to celebrate my 3-year cancer free anniversary. Exciting times! During our Disney vacation, I noticed every morning I was a bit nauseous. I had a bitter taste in my mouth, and I tired easy. Now, if you have been to WDW, being tired is not

When Deborah Dahl recalls being in her late 20s and single in 1992, it's probably not what you would expect. After experiencing stomach pains, she went to her doctor, who ordered a colonoscopy. The colonoscopy results were alarming. At the young age of 29, Deborah had colon cancer. She had the cancer surgically removed at her local hospital. Unfortunately, during the surgery, doctors found the cancer had spread to her liver. "After the surgery, a family friend told us about Fox Chase Cancer Center's stellar reputation in treating cancer that metastasized to the liver. We made an appointment with Dr. John Hoffman, a surgical oncologist who was well-known for his expertise in liver resection." Deb recalled, "My parents and I were terrified to learn the cancer had spread. As soon as we met the team of doctors, we knew we were in good hands." While chemotherapy was initially recommended, her doctor determined that her cancer was operable. After the successful su