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…
Today my guest post is written by someone I admire very much. She is a model for those of us that don’t have a strong faith foundation. Sharon is also the founder and leader of Fighting Cancer, Inc. If you are interested in helping by sending items for her Sunshine Boxes for the chemo room, just leave a message below. Welcome, Sharon!
When Patsy asked me to be a guest blogger I was quite honored. When she told me the subject I got a little nervous – how my faith has helped me through the cancer ordeal. For one thing, I, like Patsy, have determined to always be honest about my emotions when sharing them with others. I really wish I could say that I have held strong in my faith and it has totally sustained me and I have never been discouraged. But that absolutely is not real. The truth is, It has kept me going and given me hope, but there have been times I have lost sight of it and have been very discouraged, downright despairing at other times. But the difference is I have the anchor of my belief in God, and the fact that He is in control of everything, including what I am going through, and that He wants what is best for me. Does that mean I know I will be healed? No. Some Christians, who I suppose are trying to “help,” have caused anger and frustration when they imply that if I have enough faith I will be cured, or that I shouldn’t “claim” the disease (like not saying I have it will mean I don’t?? Give me a break.) I believe they mean well, but they do not have a very Biblical approach. God does not anywhere guarantee perfect health or freedom from pain, physical or emotional. He does promise to walk through those times with those who trust in Him, and that He will “love us with an everlasting love” (Jer. 31:3) I have, in fact, had some things happen that have been truly miraculous healings, but the cancer returned again (twice) and I still deal with it. At one time my kidneys stopped functioning due to an adverse reaction to the CT scan. I was in the ER all night, in horrible pain, some of the worst I have ever experienced, but they started again on the own. The ER doctor and my doctor. both said that just “doesn’t happen.” But it did. God touched my kidneys and made them work again. And there was the CT scan right before my first surgery where my doctor told me it looked like a dandelion exploded inside of me, there were so many tumors he couldn’t even count them all; yet, after surgery he told me that they were almost all gone when he opened me up. What happened in the interim? People praying for me. That’s it. No chemo or other treatment. He chose to touch me and bring about partial healing. But He doesn’t always intervene in such wonderful ways. I sometimes feel like every complication that could happen has happened to me. Most recently it was a blood clot caused by my port malfunctioning. So now I feel like I live with both a slow-ticking bomb (cancer) and a faster-ticking bomb (the clot, which I’ll have for about 2-3 months before it is absorbed into my body). But I do not live in fear of what will happen because I know ultimately I will spend eternity in Heaven, not because I am a good person, by any means, but because I have put my trust in Christ, and the Bible is very clear that the future for a believer is Heaven. But at the same time, I do not want to go yet! I have a wonderful life right now. I have great friends, many of whom I have met because of cancer. I have a wonderful family who is very supportive. I have my best friend, my daughter, who has been amazing through all of this. So the bottom line is that I still struggle with all the feelings of despair and depression and occasionally the “why me,” plus the guilt of feeling like I don’t live my days to the fullest too often and that I should be appreciating every minute. But underneath everything I have a solid foundation of faith in God and that is what keeps me above water many days when I feel like I am sinking.
I continue to believe the hardest part of writing a blog about emotions is sharing the very personal, “downer” emotions I experience. I thought long and hard about this when I was considering writing a blog and decided that I would need to commit to being transparent to my readers. Well, this post is one of them. A little history of why this is so hard for me. I am a hibernator when I feel discouraged. I’m not a very good “phone chatter” anyway and even worse when I am down. I really can’t think of things to say to others and find that my conversations are either awkward or I try to act like things are what they aren’t and that’s pretty much impossible for me. So, I just retreat. Do any of you experience this?
Like so many survivors, I have the added pressure (that I put on myself) of remembering that every day is so incredibly precious and that wasting any time is a no-no. That ‘ole positive attitude myth doesn’t help me at all on days like this.
Why am I feeling low? Who knows? I know I’m a warm weather gal and convinced my mood will lift when this cold passes. Between the polio and avastin side effects , I can get pretty darn tired of aches. A lot of my funk is missing my sweet friend, Ruth. She could always make me smile and we spent so much time together. So many people have told me that I need to find a balance in being around “cancer.” I know that losing so many friends is difficult. I have worked hard on this; however, I have found that lately I’ve spent more time giving and less about receiving. Plus, there’s so much that needs to be done if I am going to find a cure for cancer in my lifetime
Well, that’s me opening my heart up today. What’s going on in yours…
I recently had the privilege of sharing my story and leading a discussion at a cancer center. I was invited by the Terry, the chaplain there. She is an amazing woman who is so dedicated to all survivors. The event I attended is held each year and the majority of the attendees are graduates of a program called Finding Your New Normal. It is an eight session program for cancer survivors who have completed treatment that addresses many issues including spiritual and emotional wellness, nutrition, exercise, and self-care. The discussion lasted for almost 2 hours and approximately 40 survivors attended. I shared the strategies that I have found helpful i to reclaim joy in my life.
What a great group of survivors! An observation I made early on in the discussion was how “ready” these participants were to discuss the real issues of living with cancer. The group was very diversified and the participants had many different types of cancer, some had experienced treatment once and were in remission, several will be in treatment for some time, young and older, and different faith beliefs. However, the common denominator was that the members of the group had spent a lot of time reflecting on what and how they needed to move forward in their lives and had prioritized how they chose to live it. Needless to say, I was inspired and so thankful to meet these amazing survivors and look forward to keeping in touch.
One of the strategies I discussed was the emotional comfort (and fun ) I have experienced by attending retreats. We talked about what to look for in a retreat and how they are not all the same. (If you are interested in more on this, leave a comment and I will do a post). In fact, several survivors are scheduled to attend one very soon. Many of the women in the group have followed up and asked me to share some of the ones I have enjoyed. So, here you go:
- Escape http://bagit4u.org/escape-2012
- Wind River Cancer Wellness and Retreats http://www.windriverservices.org
- Women Beyond Cancer http://womenbeyondcancer.org
- Stowe Weekend of Hope http://www.stowehope.org
- Camp Mak-a-Dream www.campdream.org
- Smith Center for Healing and Arts http://www.smithcenter.org
Let me preface this post by saying that yesterday was not a fun day for me…not the kind I strive for, full of fun and spending time with the people I enjoy. However, it was what has proved to me a typical day in my life. I am very fortunate that I have learned to deal with getting tests and scans with almost no anxiety. I refer to January as the cancer test month because it’s one of several months that I have both CT scans and MRIs and infusions. I certainly don’t look forward to it, but make the best of it and just move on. I have CT scans every 3 months and, must admit that I hate drinking the 2 large cups of iodine dye. However, the MRI is the one I dread most. Not because it is a difficult procedure, but because it is the only one that does not allow use of my port for the needle insertion. A little history… it has always been pretty impossible to find a vein for me. (I recall when I was young hearing two nurses talking about me and declaring that I must be a Bionic woman because there were no veins to access.) So, what does this have to do with yesterday, you ask? Well, at my last recent visit with my Breast surgeon, I mentioned this. Being the caring doc that she is, she offered to look into this. As a result, her nurse had many conversations with the folks that do the MRI (not my cancer center, but a private group, that pretty much has a monopoly on breasts imaging). So, yesterday I went to my appointment with a slight expectation of things being better. NOT. First, it was if no one had ever heard of this request. When I wouldn’t let things go, one of the techs said she has made it clear that mt port could not be used. Now, this all happened after I had been to the cancer center, had the needle inserted, and incurred yet another cost for this appointment. So, I calmly left the MRI office and went to the Breast surgeon’s office and talked to the nurse and nurse navigator. The nurse had already talked to the MRI office and the saga continues.
I’ll stop there with my story and share another brief one of another survivor’s. A recent conversation about a survivor resource room in a cancer center. The room is staffed by survivors. In order to volunteer here, you must have completed treatment for one year. This is a good rule for several reasons. However, this survivor (no, not me) has a chronic cancer. She has been told she will never get to the point of not needing treatment. This is one of those things most people don’t understand about cancer. I know I did not. I thought cancer was cancer. Boy, was I wrong. Anyway, would it not be more survivor friendly to make an exception in cases like this? Do we not want to have these survivors also participate? What message does this send?
So, to me this all comes down to survivorship and the rubber meeting the road. Survivorship is not only about money, resources and books to read. The core of it should be about streamlining processes and thinking about what brings quality and normalcy to the life of every cancer survivor that walks in the door of a cancer center and other medical facilities serving survivors. Frustrated but not done…
The attached message bests describes my wish for you in 2013 Be sure to watch it to the end. Brother David’s part is my favorite. Many thanks to my friend, Dianne, for sharing.
I Will Light Candles this Christmas
I will light Candles this Christmas,
Candles of joy despite all the sadness,
Candles of hope where despair keeps watch,
Candles of courage for fears ever present,
Candles of peace for tempest-tossed days,
Candles of grace to ease heavy burdens,
Candles of love to inspire all my living,
Candles that will burn all year long.
When the song of the angels is stilled,
When the star in the sky is gone,
When the kings and princes are home,
When the shepherds are back with their flock,
The work of Christmas begins:
To find the lost,
To heal the broken,
To feed the hungry,
To release the prisoner,
To rebuild the nations,
To bring peace among others,
To make music in the heart.
Do you recall trying to decide on a name for your children? This was a hard decision for my husband and I. How in the world do you choose something that will stay with a person for their entire life? To complicate things, both of our children were born prematurely and we were unprepared with a name. I remember the person at the hospital repeatedly coming by and asking what name we had chosen. She was like the “name police” until we finally decided. When our first child was born, he was in ICU for some time. What to name him was a topic of conversation often. We’d mention a name and the nurses and other parents would say “nay” or yeah.
With the choice of a name being one of such importance, it amazes me that my very best survivor friend’s parents knew exactly what name was meant for her. RUTH. The name in the Bible that means friend; companion;vision of beauty. Ruth was indeed all three. Her beauty was both outside and inside. She loved things of beauty and, as a result, sought out beautiful places in her travels. I was so fortunate to be able to join her in doing this with our trips to places like Bald Head Island and Arizona.. Ruth’s beauty was probably best seen in her efforts to share the beautiful earrings she made with others in the chemo room. I have seen fear in the faces of patients turn to smiles when presented with Ruth’s beautiful earrings. But, truly, what really gave comfort was the caring, gentle way she gave of herself in sharing them.
Ruth was a friend to me in so many ways. Have you ever just met someone and known that they were meant to be your friend? Well, that’s how it was with Ruth. We met at our support group soon after she was diagnosed. Our bond was strengthened as we learned just how much we both enjoyed the same things. When Ruth would have treatment, I’d take her and when it was my turn, she’d take me. Of course, we would always do something fun when we were done. Fun was an important part of our friendship. We had a motto that we both lived by. ”When you feel well, you have fun and enjoy your life.” We understood each other and had very deep talks and shared both our joys and fears. Yes, friend describes Ruth perfectly.
My friend Ruth passed away last week and I miss her so much. It will be hard to live in this world without her strength, her gentleness, and her fun-loving spirit. I thank those of you that have reached out to me since her passing. Nicky, her very best friend, and I are planning a Celebration of Life for Ruth on January 19. If you would like to join us, please leave a comment with your email address.
A true angel.. Ruth…