“No evidence of disease, or NED, is the new ‘remission”. But there is no cure for cancer and a certain percentage of cancers will recur, and nobody really knows if it will happen to them. Statistics get thrown around, charts and studies would conclude that the odds are in my favor of remaining NED, but there are no guarantees as we would all hope for. Such a guarantee is just out of reach. If it were, then I could stop thinking about it on a daily basis and we could all just leave Cancerland behind us.
I woke up the other day and thought to myself, what if I just didn’t talk about breast cancer anymore. What if I stopped going to support groups, stopped visit the oncologist, stopped hanging out with fellow survivors for coffee and lunch dates, WHAT IF I JUST QUIT CANCER? Maybe THAT is what would get me to move further along up the road. I’ve learned of plenty of people who did just that. They never spoke of it again, and they went on in their lives and stopped identifying themselves as survivors. But then later in the week I was working the volunteer hotline and took a phone call from a woman who has stage 4 breast cancer which has spread to her bones. She really needed someone. I found it hard to relate to a lot of what she is going through, but then we found the common bond of our faith, and it was there that I realized my BEING here in Cancer is for women like her. Women who need a ray of hope. A hand of compassion. There is a sisterhood here that few can understand. I know that when I was in my darkest hour I needed the survivors whom I met and became my friends. I needed the help of those who had gone before me and came out the other side, happy and healthy. I needed them like others need me now and so I guess I won’t be “quiting” cancer anytime soon.
This was the word I received from my oncologist in a phone call today. Last week’s CT scan of my right lung noted no changes (or growth) to the nodule seen in March, and they want to re-scan it again in 6 months. An enlarged lymph node was noted as well. I guess I am suppose to feel relieved….”satisfied”….but somehow I feel, well, in limbo. Like I am waiting for a bomb to drop. They wouldn’t give me the “all clear”…And maybe this feeling comes from having been through cancer and having a bomb dropped on me once before, without warning, without symptoms, vulnerable and scared. A post traumatic stress disorder, of sorts. Always feeling like I must remain on guard. Always on watch. Terrified of it coming back again, terrified of it killing me. I’ve probably read w-a-y too many stories and heard far too many unfavorable outcomes, and so it’s easy to let myself fear the worst, but then I must remind myself that all too often its not the good outcome stories we hear about or the stories of triumph and survival, and I know there are far more of those than not . But for the time being I must be satisfied with this result and consider it as my doctor said, “good news”. 🙂 I am taking an oral anti-cancer drug now which is suppose to starve off any lingering cancer cells that might try to grow, and I take this drug for the next 5 years so I am doing everything within my power to stay cancer free. That is all I can do. “Give it up to God” what I can’t do, as my son says! Besides, there’s nothing telling us this that this nodule is cancerous, unless it starts to grow, and so that is what they keep checking.
This coming weekend that son, Keith, graduates from high school and leaves 2 days later to work at Young Life camp at US Army Camp Darby, Italy, on crew along with a couple hundred other staffers. We are busy getting him packed up and ready to be away for a month. Needless to say he is a wee bit excited!
Fathers Day orders poured in last week and I have been busily stamping up my projects and trying to stay afloat! This, plus making plans for Tim’s retirement and booking all of the details for our England/Ireland trip give me little time for fretting! Now to go to a cupcake!
Here is a great song about how I know one can get through trials of any kind. It is called “I Get On My Knees”. It’s called prayer…crying out to the heart of God…take a listen! If you can’t see the embed video, click here . “Cuz I’ve learned in laughter or in pain, how to SURVIVE! I get on my knees!”
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The mri and ct scan came back yesterday. My cervical and thoracic spine have “multiple hemangiomas”. These are typically benign vascular tumors. Now I am waiting for my appointment with orthopedics to find out what we can do about it. Lots of waiting these days. Still no relief from the numbness in my back.
From what I am reading these can become large enough to cause compression fractures but can be shrunken using radiation. I really have to find out more when I talk to the doctor but the good news is that my oncologist isn’t concerned about a cancer of any kind at this point. Radiology recommended a follow up ct scan in June to see if there are any changes on a nodule that showed up in my lung (which honestly may be absolutely nothing).
Thank you for your continued prayers.
I spent last weekend at a 2-day training to become a certified counselor with Network Of Strength, a 24/7 peer support hotline for breast cancer patients and their loved ones.
I attended, along with 16 other women from around the country, and shared a hotel room with a woman whom I met at my oncology ward, who was also in training. Together we all learned how to help patients who call the hotline to discuss their most pressing issues and emotions while dealing with diagnosis and treatment for breast cancer. I learned a lot about various aspects of the disease as well as resources that are available to patients. I also learned a lot about the social prejudices that often keep wo(men) from seeking screening and treatment, and how to deal with people when they are at the end of their rope and want to end their lives. It was an intense and packed-full weekend, but one that assured me that this is the direction my life needs to go as I seek to turn my cancer experience into something that helps other people. Network of Strength’s mission is this:
“…to ensure, through information, empowerment and peer support, that no one faces breast cancer alone.”
This week I took my online test and I passed! Starting Wednesday and Friday this week I will begin shadowing calls that come in through the 1-800 hotline, listening to my manager speak with people who call, and then reviewing various aspects of the conversations and what I have learned. Next week she will shadow me as I accept the calls. Within the next few weeks my computer and phone will then be wired to their hotline headquarters and I will begin to be scheduled with shifts to be covered throughout the week while I am at home.
This new position will force me to STAY home more, which I need to do in order to complete everything around the house and with my business. I thought I would get a breather after the Christmas holiday rush, but things have picked up as much as they did in mid December! The only way to ensure that I don’t get behind, is to commit to staying home more and filling the orders as they come in.
Good news is that I haven’t had any allergy outbreaks since beginning the daily Allegra last week, and the rest of my blood tests should be in by the end of this week. Hopefully after the doctor reviews them all she can diagnose what the underlying cause of these are and what can be done to correct it.
Tonight we have 2-6 inches of snow forecasted, this, following 5 inches we got over the weekend! I think 2010 is now making up for a lack of snowfall we haven’t had in the last 3 years!
The training has begun! I am walking an average of 3.5 miles a day to prepare for the Avon Walk that I will be doing in just 6 months. The fall foliage and cooler days makes this an enjoyable activity and I also frequent the gym for additional weight lifting and endurance work outs. I held a fund raising event at the breast care center at Walter Reed Army Medical Center last week and raised 8% of my goal by selling my jewelry creations. So far I am at nearly 30% raised so I continue pressing on with those efforts a little bit every day. Thank you to all who have donated so far! My Avon Walk page can be viewed HERE.
This week my MRI results came back all clear so that was good news! I must admit I held my breath for those 8 days waiting for results. I am told that this feeling of dread lasts a long time, at least until the ten-year survival point. Even then, with no cure for breast cancer, the fear of recurrence looms all the time. The MRSA infection in my arm continues to heal well and is down to a dime-sized scab with some scarring.
In the meantime I celebrate LIFE and help those newly diagnosed whom I meet, which seems to be nearly every week. The numbers of women affected by this disease never ceases to amaze me. Giving them hope and support gives me a reason to continue fighting for a cure.
This week I had a MUGA scan of my heart. This is a nuclear scan of the heart. Muga stands for Multiple-Gated Acquisition, a 40 minute test where the radioactive tracer injected into my bloodstream is tracked and followed by a gamma camera as I lay on a table with electrodes stuck to me and a machine records all of the activity. I began getting muga scans before starting my chemo therapy in December. Things looked fantastic then, as I scored a 69 and was told that 55 would be optimal. Then I had another scan in March showing slight decrease in heart function at a scoring result of 65. In July that number had gone down to 62. That’s when I began to worry that the remaining 5 months of therapy were going to do more damage, and I’d better to something to get my heart back into shape if I could. That’s when I joined the gym and for the last 6 weeks have been exercising rigorously 3 – 4 times a week. Tuesday’s scan showed a slight improvement and came in at 64, the ejection fraction which is an indicator of heart function. It is no wonder! I feel great and I feel strong and am not tired all the time like I was earlier in the summer. I will have another scan when chemo finishes after Christmas. What will a full 3 months of spin classes and treadmill do for me!? I can’t wait to find out!