It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.
One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying my body’s ability to produce mechanisms for absorbing nutrients. He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population. Needless to say, I think we are on to something! Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!
We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from. While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon. In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.
I am in Missouri this week, babysitting my 2 year old nephew and 5 year old niece. Ten days of stepping back YEARS in my own life of 6 a.m.wakeup calls and bed time giggles and story time.
The joys of childhood’s innocence! There is nothing quite like that wide eyed wonder of falling leaves, spider webs, starry skies and making pancakes!
Today we spent the day at a working farm with barn animals, a place we use to take our own kids 15 years ago when we lived here. A dry, sunny Indian Summer day, and perfect for our picnic too!
I captured lots of great photo shots (even showed my niece how to get a great pose! She took this photo of me) – and we enjoyed a visit with grandpa and grandma in the afternoon.
Even though this is an exhausting pace,it is a wonderful change of pace, and one that I am thoroughly enjoying! Read more below…
Although I am on a bit of a working “vacation”, I am ALWAYS in the fight against breast cancer, and reading, researching, and collecting all of the information that I can.The month of October has no shortage of resources! Click on this link or directly on the video at the bottom of this page to listen to what Dr. Susan Love has to say about where we need to go now in our fight, and how the pink ribbon awareness campaigns of 25 years have worn out their welcome….what we need now is to END breast cancer.
I was asked tonight (by a woman I met), “So are you cancer free now?” I’m sure a lot of people wonder that about those of us who have had cancer and the straight up answer is, I hope so!
“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.
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).
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!