Hello, dear friends! I do hope you are all doing well and looking forward to the upcoming holidays. Several of you have asked how I am doing so I’m using my blog entry today as an update in hopes it will help some of you going through similar issues. So, here goes…
I mentioned in an earlier post that I received a diagnosis of mast cell disease and have been asked about this. For several years, I have had some very strange reactions to certain foods. I would suddenly start feeling nauseated, become extremely flushed, and go into an anaphylaxis episode. It was a bit scary. Mast cell is a rare autoimmune disease that involves the body having too many mast cells. It is not an allergy to food. The only way to determine one’s triggers are to by actually experiencing an episode. Some people are triggered by foods and others by things in the environment. Treatment for me is, of course, avoiding triggers and medication. I carry my trusted epi pen and Benadryl with me. If you want to learn more, go to http://en.wikipedia.org/wiki/Mastocytosis.
For several years, I have been having difficulty with diarrhea. (As you can see, I have no pride when it comes to talking about bowel issues). So, I have had numerous tests done and seen 2 different Gastrologists. I have lost weight because of this and have been getting weaker and weaker. Believe me; the body needs to retain nutrients. Well, I began seeing an integrative medical doctor at Northeast Medical Center and she ordered a celiac profile. Yep, I have celiac disease. So, I have been adhering very strictly to a gluten-free diet. I like not running to the restroom after eating and have learned now that a gluten-free diet is recommended as a healthy eating plan for people with and without the celiac diagnosis, particularly cancer patients since it reduces inflammation. http://celiac.org/celiac-disease/what-is-celiac-disease.
Many of you know that I have been on an avastin trial since my cancer recurred in 2009. I have been so fortunate that it has worked well for me and kept me cancer free since then. The long-term effects of being on this drug for so long are unknown so it has been a bit of a risk, but well worth it to me. Well, it seems my time hanging out with avastin has ended. A couple of months ago, my kidney protein/creatine ratio labs began to rise and continued to the point I had missed several treatments, per the trial requirements. The hope was that taking a break from avastin would make the numbers go down, but, unfortunately, they almost doubled. So, now I have been referred to a nephrologist to determine what the next steps are. And, yep, I was terminated from the trial due to the increase.
Several of my family and friends have asked me how I am feeling about having to stop avastin. It does seem somewhat strange. Getting the avastin every 3 weeks has become a part of my regular routine. I understand why some women discontinue drugs that are working. I have been tempted to do so at times. However, when I entered the bleep bleep cancer world I made a couple of commitments to myself. One is that I will take risks and “ride any wave” that works for as long as I could, so I tolerated the side effects, which could have been much worse. I have also attended many conferences and learned that some believe that when avastin is used for an extended length of time and stopped, the cancer comes back with a vengeance. This was a risk worth taking for me. I take staying alive very seriously.
But, all is not bleak! Except for the blood pressure hikes and the kidney woes, I feel better that I have for a very long time. Getting the avastin for so long has really caused my body to take a hit. I need some time to build my strength and my medical team agrees. I am focusing my efforts now on eating right and taking care of myself…something I do have control of. My team at Levine Cancer Institute (thanks Dr. Hall, DeLeslie, and Sarah) has been exceptional and caring and kept in close contact with me and included me in the decision-making. In fact, I believe that we have worked as a model transdisciplinary team. My advice: insist on this from your team. Your input is valuable and needs to be heard. Of course, the more you know, the more you can contribute.
I mentioned at the beginning of this post that I hope others experiencing similar situations as mine can benefit. Ok, here’s another commitment I have made. I have worked very, very hard to really live by the belief that “I will not worry until there is something to worry about” and that has made my life a much more joyful one. This may not make a lot of sense to you given I have just shared some concerning news. However, remember, cancer is a skilled robber and stalker so we CANNOT hand over our power to live in peace and contentment. I know I sound like an Anti Cancer Evangelist but for me I have to feel that strongly about it to protect my joy. I have a feeling any of you dealing with struggles can identify. Hey, I’m just a gal trying to hang in there and have fun. I certainly may fall apart in the future. However, that’s the future and isn’t it really today that matters??
Have the happiest of Thanksgiving ever!! I am incredibly thankful for you all today and always!!!!!!
about pink football cleats or what color towers are. I just want funding for research NOW so we can find a cure for the monster.
It has again slithered out like a snake taking hold of an unlikely healthy body, loving spouse, dedicated parent and person I love dearly. Enough said…
I’m excited to be on my way to Miami to speak at the Teal Over Miami event. The event is sponsored by Lydia’s Legacy, an organization founded by Carin Ross Johnson in memory of her dear mother, Lydia, who died of cancer. Lydia, was an active advocate in her hometown of Miami. There are limited services there for survivors of gynecological cancers, so Lydia’s Legacy is having a special event called “Teal Over Miami.” Carin has a core group of dedicated volunteers and needs more. So, if you’re from the Miami area and would like to help provide needed services, let me know. Special thanks to my FORCE (Facing Our Risk of Cancer Empowered) Miami sister, Wendy U. for all her help!
Come out and join us Saturday night. I promise it will be fun and would love to meet you. http://www.tealovermiami.com.
Of course, since this is my first trip to Miami, I must stay for a longer visit and enjoy the city. I have been waiting for this trip for some time because I get to spend several days with my very best friend, Sherry. Sherry and I have known each other pretty much since birth. She is an absolute doll and more fun than you can imagine. I admire her very much. She has been the caregiver, who suffers from a serious illness, for many years now. She certainly deserves this trip and I can hardly wait to see her. Sherry has been there for me through some really tough times and I love her dearly.
So, bags packed, flight leaves tomorrow! So important to make time to have fun and to spend time with those we love. I am truly blessed.
Love to you all…
Love to you all…
That sentence tells it like it is and is so true for me. Admittedly, that’s why I have not posted lately. I just haven’t had the energy. But to be completely honest, I find it difficult to post when I am feeling blah. I promised myself that I’d not only post happy news, but I am surprised at how hard it is to write about uninspiring stuff. Have you ever noticed that most pictures of survivors are those depicting victory? I was looking at a recent commercial recently and it was about an upcoming walk. All the survivors looked so full of energy. One time I heard a doctor talk on Good Morning America. She was asked why some cancers were not more active and better represented. Her reply was so incredible. She clearly stated that many survivors are just too sick to do it. Bet that didn’t inspire anyone.
So, let’s talk about being tired a little. The causes are much more “day-to-day” than others sometimes realize. You start with limited energy. I have worked really hard to only use my energy doing what I want to do with those I want to do it with, so it’s not really an issue of prioritizing my time. Survivors often have to use it doing chemo, tests, and medical appointments. For example, I have 3 next week and that’s a good week. Another issue is that if you are in treatment long-term, the drug just beats your immune system down and that causes other medical problems. That’s been my case. I have seen a lot of specialists due to issues that seem to have no resolution. My latest diagnosis is mast cell disease. So more tests. I have added on 5 more medicines and they are causing me to be even more tired. These are just examples of why the issue of being tired seems to be pretty chronic for many survivors.
The impact of being tired way too much can be really depressing. Naturally, we don’t necessarily look tired or act tired around others. It’s very unlike when you’ve lost your hair or have other signs that you are struggling. Of course, it’s hard to get things accomplished, hard to find time to be with those you love (and I have so many), and hard to be part of a family where others are productive. For me, I limit my travels and I find it very hard feeling as if I am wasting valuable time not living the life I have been blessed with.
I have been thinking so much about this and hear others that are dealing with cancer and other illnesses talk about it, so I decided it warranted a post. What are your thoughts on the issue?
Today I left home early for a scheduled lab draw appointment, CT scan, Doctor’s appointment, treatment. This is the normal for cancer survivors in the Cancer World. I was on my way and uptown in rush hour traffic just sitting at a light in my compact civic hybrid, waiting to turn. SURPRISE!! Suddenly, a large Expedition SUV slammed into my bumper. The driver came up to my window (there was no place to really exit my car since I was on an uptown street), checked to see if I was hurt and started begging me not to call the police. This guy was desperate, telling me it would be a major problem for him. To make a long story short, I reiterated that I was calling the police for sure, assumed he had no license but to give me other information. He then went back to his car and left the scene. I tried to see his plate number but could only get part of it. The police came, were very polite but no help at all finding him. So, I drove myself to the emergency room due to pain in my neck, shoulders, and back. Thankfully, nothing was broken and I’m just very sore and achy but have some great meds. Due to the fact I have post polio and joint issues from my cancer drug, the impact is a real pain (sorry, had to say that).
After my morning experience I asked myself why I was so cool and calm. I realized that all the work I have done to decide what is important is actually working. Again, this takes a lot of work and does not happen quickly. I allow myself to worry about very little. My mantra is that “if it ain’t cancer, it ain’t a worry.” I find it very liberating to live life this way, not waiting for the next shoe to drop. Cancer survivors must find strategies like this because we have such limited energy and can deplete it quickly. I constantly assess how to spend my time. For me, it is a cherished gift and honored beyond belief.
Today it was especially easy to know what matters. This was the 30th wedding anniversary for Steve and me. Steve has been a rock for me in so many ways I could write a book. His sense of humor is something I love beyond words. Since my diagnosis in 2006, he has done so many things for me, both physically and mentally, to keep me going. I often feel a sadness for survivors that do not have the incredible support that I have had from a partner. I have been blessed way beyond what I deserve and consider it unbelievable that I was given such a cherished gift. So, today, it’s obvious to me what matters and I look forward to many more wonderful years with such a special guy. I love you, Steve…
I met Ruth several years ago at our cancer support group. You may recall that I wrote a post last December about Ruth titled A Name to Remember . Ruth was the kind of person that was always looking for ways to help others. She never saw this as a chore, but, rather, as a Blessing. When she learned that I was active in finding Boston Terriers adoptive homes, she was immediately interested and eager to know more. (check out http://www.btrnc.org and http://www.ccbtr.org). I was excited to find someone who was willing to help foster the dogs that were surrendered to the rescue. Fostering dogs is not something that people usually do without thinking about it for a while. Not Ruth. She was ready to do her part to help these precious pups. Her only request was to talk to her best friend, Nicky, since she shared a home with her. So, Ruth did this and Nicky was fine with being a foster parent. At this point, I am thinking, “Are these angels for real??”
Soon after this, one of our local animal shelters contacted the rescue about a dog desperately needing help. They did not think she’d live through the night unless we found a home for her because she needed very intense care. Since this was Ruth and Nicky’s first foster, we were planning to place a dog in their home that had minimal problems. However, things often don’t work as planned in the Rescue World and so off she went to Ruth and Nicky’s (“The Palace”).
Likewise, things don’t often work as planned in the Cancer World. Ruth was again in treatment fighting the beast. To make a long story short, we decided to foster little Aggie together, since we were both in treatment and I had just placed my foster dog. So, we called it our “Timeshare Foster” and worked together caring for Aggie. Fortunately, Aggie recovered from her serious condition, but, unfortunately, we learned she had a long list of medical conditions, including COPD, hernias, and urinary problems. She was in diapers all the time and pranced around in suspenders attached to them. Her prognosis was dim but as we got to know Aggie we realized she was a senior dog with what a vet described as an unbelievable will to live. Ruth and I had an ongoing joke that she’d outlive us both .
One of many things I have learned in rescue work is there are certain dogs that “find” you and when they do, they claim you. This happened to Aggie. Aggie didn’t like men much and we have 2 in our household. Aggie takes steroids everyday, so likes to eat (actually, all Bostons are little piggys) and Nicky is a gourmet cook, so she loved to spend time in the kitchen there. So, she tolerated us until she could return to The Palace. Until one day.
She decided she wanted to stay at The Palace and she started working to make that happen. When she was at my house she barked incessantly. Our vet with 30 plus years of experience at first thought it was a sign of senility and then anxiety and added prozac to her regiment. Nothing helped.
Sadly, Ruth’s cancer progressed and she was in bed more. Aggie chose a place at her side and only left Ruth for a diaper change or short trip outside. Aggie’s heart broke, as did so many others, when Ruth passed.
Nicky once told me that she thought she was caring for Aggie, when, in fact, Aggie was caring for her. We all continue to grieve the lost of our dear Ruth, but especially, Nicky and Aggie. I know Ruth is very happy that, as of this month, Nicky has officially made Aggie the official Queen of The Palace by adopting her and making her a true member of the family forever.
Sometimes, miracles do happen in the Cancer World…
I recently had the privilege of attending the American Society of Clinical Oncology Annual Meeting . The meeting is the annual gathering of more than 25,000 doctors and healthcare professionals that work in the oncology field. This year’s meeting was titled “Building Bridges to Conquer Cancer.” The ASCO website describes this by saying that “attendees of the 2013 Annual Meeting find cutting-edge scientific presentations and comprehensive educational content.”
I attended with 15 fellow advocates across the USA in the Focus on Research Advocate Institute as a nominee of the Ovarian Cancer National Alliance. Prior to the meeting, we attended webinars led by Focus on Research on different scientific topics. I’d love to share more with you about the program so if you are interested in representing advocates, just leave me a comment.
Following the meeting, each scholar wrote a summary on the meetings we attended which included the most current information on progress in research “hot off the press.” I represented ovarian cancer advocates so I am including the link below. Just copy and paste it and you will be directed to the summary report that I completed, along with my teal sisters that attended. If you would like to see the complete report on all the cancers represented, just leave me a comment and I will send it to you. I would appreciate it if you’d forward this post on to any of your cancer contacts so more survivors can have the benefit of the current update on their cancers. There were so many cancers represented, some very rare. I learned so much from the other advocates and think you will, too.
Hope you are having a blast this summer!
I didn’t want this day to pass without wishing all you moms a glorious day! This day takes on a cherished status to those of us that live in the cancer world. No words can adequately express the gratitude I feel about being here today with my precious children. Making more memories is such a gift and a blessing.
I am so touched by the efforts of my beautiful friends, Dina and Carin pictured above with me. Dina and Carin lost their mothers to ovarian cancer. This Mother’s day Dina and Carin chose to spend it promoting awareness and research through our local organization (Lydia’s Legacy) created by Carin. Dina has worked closely with professional photographers in our area and coordinated photo shoots for mothers and their families. I had a ball at our photo session (we even included the grand dog) and got to see my survivor friend, Carolyn. What brave, giving souls Dina and Carin are to spend their day giving to others at a time so difficult for them. If I were making a who’s who list for the most caring people in the world, I can tell you for sure Dina and Carin would be at the top! (Dina and Carin, if you’re reading this…Happy Mother’s Day to you, too!)
I am thinking so much about those I love that have lost their sweet mothers due to this terrible disease. My heart breaks for them. I pray that Dina, Carin, Lindsey, James, Alex, Brett, Karen and all the other young sons and daughters that have lost their moms receive some comfort from knowing they are being held tight by me. However, I realize that no amount of loving will ever completely heal their broken hearts. I love you all…
You have most likely heard on the news that the Supreme Court is now hearing oral arguments on gene patenting. Basically, the mega company, Myriad, is trying to patent the hereditary BRCA gene testing. The identifying the location of this gene was discovered by Dr. Mary-Claire King, a researcher at University of California at Berkeley. This has huge implications for people like me who need this testing. If you would like to know more about this, in my opinion, the authority is the FORCE organization (Facing Our Risk of Cancer Empowered). Please go to http://facingourrisk.wordpress.com for an easy to understand explanation of the impact of the potential patenting of this.
Like most people, I had actually not thought much about the genes in our family. I was well aware of the strong history of alcoholism on both sides of our families and my husband and I planned to discuss this with our children (yeah, right, mom, thanks…I will not drink in college). You can imagine how surprised I was when the issue of mutant genes became a real issue of concern when my son was just in elementary school. He had completed several surgeries due to problems with allergies/sinuses. One day we were all in the one day surgery center having his adenoids removed. We began to worry a little because the surgery was taking much longer than usual. The next thing we realized was that several medical personnel were coming over from the hospital (thankfully, it is attached to the surgery center) at a very fast pace. The doctor soon came out and informed us that our sweet boy had had an episode of Malignant Hyperthermia and was now lying in a bed of ice trying to get his very high fever down and being transferred to Intensive Care. So, you are thinking, “what the heck is Malignant Hyperthermia?” Well, Wikipedia defines it as “a rare life-threatening condition that is usually triggered by exposure to certain drugs used for general anesthesia, specifically the volatile anesthetic agents and the neuromuscular blocking agent, succinylcholine. In susceptible individuals, these drugs can induce a drastic and uncontrolled increase in skeletal muscleoxidative metabolism, which overwhelms the body’s capacity to supply oxygen, remove carbon dioxide, and regulate body temperature, eventually leading to circulatory collapse and death if not treated quickly.” Over 80 genetic defects have been identified with the disorder and only one parent has to carry the gene to pass it on to the child. I must admit, it was a pretty scary event. Thankfully, another episode did not occur after surgery (sometimes it will). The only surgery my son has had since was his wisdom teeth, which was done in the hospital under very strict guidelines.
Of course, my next chapter in the family genes book was in 2006 when I was diagnosed with cancer. As I may have mentioned before (maybe you can remember, I can’t remember what I ate yesterday), I did not fit the profile for hereditary ovarian cancer. My hero doctor encouraged me to take some time to recover from my extensive surgery since I had had serious complications. We negotiated this and I later insisted on getting the blood test. The issue of meeting the family history profile is also a financial one, since some insurance companies will not pay the several $1000s for the test without it. Frankly, I decided we’d just worry about that later. Funny how financial worries take a back seat when you are focusing on staying alive. So, you know the rest of the story…I was indeed BRCA2 positive. This meant that 1. I was at even higher risk for breast cancer and 2. My children may have inherited the screwed up gene.
So, next step was my daughter’s testing. She was very focused on my recovery and very clear to tell the genetic counselor that she was ONLY doing this testing because I was so paranoid about it. As you may remember from her earlier post, she was also found to be BRCA2 positive. The implications of this for her put her in a position of making some very hard decisions about her health and life. (If you would like for me to write more about this, just let me know).
What does all this mean for the current patent case in front of the Supreme Court?? I absolutely hate having these mutant genes. I sure wish they were fixable, but they are not. But, THEY ARE MY FAMILY GENES! Not a computer or iPod to be patented and make $$$. (You will read in the FORCE blog that I referred to above that Myriad projects earnings of “2013 revenue will fall between $575 million and $585 million.) I want women to have access to this testing and to not have to wait a long period (like my daughter and I did) for the results. I want them to also have the benefit of genetic counseling to understand the impact on their life and what actions need to be taken to prolong it, not just a blood test and one page letter from a company. That’s not much to ask, is it?
I’m closing today on a much happier note. I want to wish my dear sister, Donna, a very Happy Birthday!! She is the best sister in the world and ALWAYS there for me. I love you, sis!!
I’ve been asked by several of you for an update on my last post. Good news!! I am feeling so much better! My terrible headaches have not recurred (thank goodness). I had a brain/sinus MRI due to my doctor’s concerns that something vascular may be happening. The results of the scans were negative, whew! We haven’t yet been able to determine why I am having the episodes of feeling like all the blood is gushing to my head (I look like I am having a major blush session), so we will continue to monitor this. I missed 2 avastin treatments, but had one last week and am doing fine. I am scheduled for my 3 month scan this month. (I should have enough radiation in my body to not need to turn on any lights in the house). So, all is well and I thank you all from the bottom of my heart for caring about me. It really touched my heart and soul.
And, saving the best news for the last….drum roll…I made it another year!!!!! I have a birthday tomorrow! In 2006, it was very iffy that I would be here 7 years later to celebrate. The past 7 years have been filled with so much happiness with family and so many wonderful friends. I feel so blessed and thankful! And, if you want to know what I want for my birthday, just check out my facebook page or email me. I love you all…
Have you ever noticed how some families have sayings or slogans that become popular? Well, the “Somebody Better Do Something” is probably the most memorable one for me in my family. It was created by my mother and used primary as advice for her precious grandchildren. If one of the kids started misbehaving or needed something, we’d hear the mantra and knew it was the command to get with it and take action. The saying is still used in my immediate family and, I am sure, will be heard throughout generations I said it once at work in a management meeting and my boss (who was incredible) found it very fitting and quoted it with passion many times (often not to my advantage).
I have decided that having cancer is a pivotal time for “Somebody Better Do Something” and I can honestly say, they do and it can really be a pain and very draining! This is one of those things that should not have been a surprise for me, but the amount of things that lead to other things being done is pretty overwhelming at times. I wasn’t naive having lived with polio for 60 years, so the fact that this sometimes overwhelms me is, I think, significant. Let me be specific. I have found myself recently in this pattern. The trial drug I am on is one that has not yet been approved for the cancer I was diagnosed with. Most women do not have the success I have for the amount of time I have been receiving it. This has, of course, been a blessing. However, the effect of it has limited data, although the research clearly demonstrates that it can have some serious side effects. Recently, I have had worsening sinus issues so I was referred to an Eye, Ear, and Nose Doctor. Soon after that, I developed what was thought to be a sinus infection; however, it did not respond to strong antibiotics, so it was probably viral so off to the internist I go, then I developed severe headaches (worse than the migraines I have a history of having) and lastly I have been having some weird episodes of feeling nausea and faint.
My mom would be proud of how my wonderful oncology team has taken charge and recognized that “Somebody Better Do Something” and has stepped in to take a look at the whole picture and quickly scheduled a MRI and halt all treatments until the results are in. So, that’s my next step. I’d appreciate your prayers.
Also, prayers for my survivor friends Erica, Ashlyn, Phyllis, Trapp, Gwen and their families.
I decided to write about this today because I think it’s important to recognize the burden that cancer can put on one’s life. I am lucky. I am retired and getting to so many appointments is not difficult and I live close to my cancer center. However, I have many friends that work and this can be hard. I am also so fortunate to have insurance, but I know many women that struggle with bills. I also worry about the men and women that have difficulty navigating the cancer maze. It’s not just the practical issues that make this hard. The emotional energy attached to constantly attending medical appointments takes an incredible amount of energy. Too much planning has to be used for this and too little time is sometimes left for spontaneous living. Believe me, I have been on a mission to not allow my appointments to control my daily life but, let’s face it, you only delay treatments for so long when you have an incurable disease. Believe me, for those with chronic conditions it can be all-consuming at times.
So. what does a gal (or guy) do? We just keep on going. We continuously evaluate the timing of tests and other appointments. For example, when a CT scan was recently recommended, I discussed with my doctor waiting until April when my usual 3 month one is scheduled. This was the plan; however, due to new symptoms, we had to change it and do more testing earlier. But, hey, all a girl can do is try, right? I also try to always schedule appointments around fun things I like to do. For example, my fav thrift stores are open on certain days, so I head uptown, get my tests, and go shopping. I have also been known to drop by the Dairy Queen on occasion. I guess what I am trying to say is that I don’t give medical interventions more power than the other important parts of my life. I try to make them just another stop in my day. What things work for you??
As for me, I’m not feeling anxious or worried about my upcoming plan. I have worked hard to not let cancer control my joy and rob me of life and am proud to say I have made some progress in this area. So, fyi…”Somebody better do Something” is going to be me and it’s going to be a beach trip to Florida or to the mountains of
Vermont very, very soon…