Great News

The nurse from Lancaster G/O unit called today to confirm that Fox Chase will review my records and meet with me as soon as possible. I am hoping there may be a clinical trial or access to new meds with helpful funding via this option.

Unfortunately my CA125 began to slowly rise even while on my last treatment with gem/cis, which means I have probably exhausted its benefits for me. Thankfully the gem/cis program has given me two very reasonably healthy years. My doc has been very honest that it is his objective to keep me alive long enough for something new to attack this beast.

Sorry for the inconvenience

For all of you who regularly follow and comment on this blog, I am sorry for the inconvenience of needing to moderate all comments. Unfortunately there is an individual who has chosen to harrass myself and my friends through this venue. I began this blog as a means of consolidating intested friends, family, and other cancer survivors to share my journey with cancer.

This really is not the avenue to address the condition of my faith or heart or to direct unfounded accusations toward me. If someone knows me that personally I should hope they are brave enough to contact me and address their concerns privately rather than on a public forum under cover of anonymity. I am hoping the moderation will curtail further such activity.

Trial Run

The chemo nurse called yesterday very concerned about my platelet count. It had fallen to 10,000. Not having any symptoms of such a low count, the doc decided to wait 24 hours. Not to hold anyone in suspense, my counts climbed by 11,000 overnight and the anticipated transufusion was cancelled, but it was a good trial run for us.

Last year, after my admission, I had promised the younger children they could go with me if I was to be admitted in the hospital two hours away. Yesterday afternoon, we made all the arrangements, notified the school, etc. Last evening, I sat down and talked with the children about what was happening and prepared for the trip. It was good news not to be going today and also reassuring that plans had fallen into place and all went smoothly.

Meanwhile, I am living 'cancer free' for 12 days and counting.

Smilesiris, please be aware that this is a public forum read by many many friends and family as well as whoever else may join in from cyberspace. Some have expressed concern with your comments. The internet is a wonderful means of communicating with many but is also a ticklish forum to maintain privacy. If there is something personal you wish to address please contact me via another means. Thank you.

Faith and Hope

 Way back in the dark ages a dear friend, Jaci, gave me the subtitle below my yearbook graduation photo. It is difficult to count the number of times in my life since that these words have come to me like prescient wisdom from a loving heart sister. They have sustained me often in difficult situations. These words were "Hope is a risk that must be run".

Once again I sat in the doc's office, soon to finish the current treatment, anxious about the future. I hear his words to stop treatment. I hear his concern that soon nothing will work from their arsenal of weapons against this beast. I know in my heart it is God's blessing that I have enjoyed the last three years of general good health. September 27th is my three year anniversary of ovca diagnosis. A bitter sweet celebration of the date realizing one's immortality and also that every day has been grace from my Father above. I am a survivor at this junctor but wonder for how long. There just isn't a time frame that would be satisfactory.

I swing emotionally from take each day one at a time continueing a stable routine and seeing to each day's trouble to panic over getting everything my heart desires done, realizing dreams and pouring all into my children's hearts I can in the time I have. I hold fast once again to these words knowing  "Faith is hope in what one believes but does not yet see".

Speed of lightening

Whew, what was that streak of light? Oh it was summer. It's gone now. Wow, what a sight. Our first public school summer. We (really I) tried hard to have a normal homeschool perspective on these three months, but that proved impossible when the children have been swept up into the world's flying version. Crash and rise again the last week of August pheonix style to file into appropriate boxes of learning. They have adjusted well in one year. No tears, crying or hanging. They walked excitedly into the brick building rising threateningly in my view. They slapped five, greeted old friends, hunched under their backpacks (one old, one new thanks to the economy) and soldiered forward with the ringing bell. I sat in the car proud of their coping skills, grateful for the successes of last year and the hopes for this year, but holding my heart gingerly in my hands as I see what is so tenderly important to me for them lieing in the dust.

Crumbled amongst the pavement stones lies the love to learn, the eager comfort of books, the questions and answers so far out of the box I needed a road map, their passions and imaginations. This yellow brick road holds forced learning, scheduled investigative inquiry, limited phsycial activity, standardized performance, and legislated reading. Tossed among the weeds growing in the cracks are values, ethics, and morals to mud their feet and stain their souls. 

But yes, they've grown. Yes, they've adjusted. Yes, they fit right in and have learned the rules.

Summer's Heat Mirage

Particularly when driving I notice the heat coming off the highway ahead in a shimmery dreamlike haze. That is the same image in my mind as my health treatment progresses. Meeting with my doc yesterday, I realized my health is strong, my lifestyle is normal, my energy is good yet that shimmery haze is approaching on life's highway.

I've been in active treatment since Sept 05. Currently used drugs are still effectively reducing the CA125 count, which measures the cancer protein in the blood, now at 3. It's not likely to go any lower even with continuous treatment. My body is rebelling though with more nauseau. That makes life unpleasant but still doable. Besides what I have already used, there is very little else to turn to that is practiced medicine for ovca. He reviewed a few things he is trying out with long term patients but in my mind, I can't place myself at that end of the spectrum yet. I want to keep using the tried and true until no longer possible.

My window of dreams is shrinking. How do I use each hour of the day? What are my goals for children and myself for the next year? Am I willing to invest energy in a new venture if I'm not able to see the end? Remember Moses traveled for 40 yrs to be denied all but a lookout point view of the promised land. What are my battles worth fighting when each one consumes precious energy?

In the driver's seat, that humid haze obstructs my view. I can see only so far.

Life a'Kilter

Sorry for such an absence. Life has been quite strewn about lately. My second treatment in June was cancelled due to low white blood counts. This was a disappointment, but the good news was my CA125 was 4.

Meanwhile, we picked strawberries and I was reminded of a favorite children's book Razzamatazz Berries, berries, berries everywhere, strawberries, huckleberries, raspberries tumbling all over the pages. I love the berry season. Tried a strawberry sorbet and it turned out quite well. Rhubarb has been tasty too. We made it to market one day for fresh vegies and the children visited their favortie honey stand for honey candies.

My July treatments went as scheduled. Surprisingly my wbc was higher for my second treatment than for my first. CA125 is holding steady. I've not been feeling well for this fourth of July weekend, but this will pass and next week is another week. We enjoyed local fireworks with our neighbors instead of any big extravaganza this year. So wishing everyone a Happy Fourth.