Dove's Flight

OK

2009-02-10T13:23:00.000-08:00

You can contact me directly at DovesMail1@gmail.com . Give me some feedback or help me out here. I am devistated that this blog appears to be no longer useful for its intended purpose. One option would be to put this email contact at the end of each posting but I am still consigned to using only general information here that is not of any personal nature. My wings have been clipped.

Can you hear me now?

2009-02-10T13:01:00.000-08:00

Unfortunately this blog has run across a fated outcome of modern tech communication. It allows me to share updates and info to many many people with one entry. It happens that a sweet individual whom I held dear to my heart had chosen to use this venue as a place to scurrilously attack me and flaunt very personal information. I am now consigned to enter only superficial information because some entries have been divulged to other sources to hurt me.

I have since opened another sight whose members must be approved by myself personally to post there. If in the future someone crosses the boundaries established I will be able to delete them from membership. There is much more information there and more accessible means of communicating back and forth.

Many people read this blog and never post. I would like some feedback as to who is reading this blog, who would like this blog continued with its more general posts or if others would like to access my other site. Think about this awhile and I will mull a means that you will be able to contact me anonymously with your insight.

Hit by a Truck

2009-02-04T05:51:00.000-08:00

A minor sinus cold turned into a massive uhaul bronchial infection. Wow. I'm still lying crushed on the highway of February's afflictions. Events like these would have been an irritating obstacle prior to chemo, now it takes me three days to peel myself off the pavement. Fortunately friends are here with their shovels and scrapers. Guess I'll reassemble once again and pick up and move on.

This Saturday I am looking forward to some scrapping time. Til then, just takin' it easy.

Progress once again

2009-01-29T14:02:00.000-08:00

It would seem the Avastin is working well. The CA125 count is hovering around 17-21 which is normal on both scales accepted now for this protein in the blood. One scale, the traditional scale holds under 35 as normal and the newer scale uses 21 as the max. I'm having no discomfort or pain and the side effects are particularly mild. The most persistent difficulty is the continued weakness in my thighs. It's a deep bone fatigue that makes it hard to stand, walk or do physical activity for any length of time. So I am learning to pace myself when active and doing things that can be done easily sitting down.

I have a terrific support team that helps me with the heavier cleaning to keep on top of the household and odd jobs around the home. I am continually grateful for these blessings.

The Sun

2009-01-23T13:32:00.000-08:00

I noticed yesterday the sun is coming in closer in its orbit. I feel more warmth from it and notice it is more directly in my line of sight again. I miss the summer's sun during this cold season. Our new house has many windows which bring in much light, but on cloudy stormy days nothing seems to help.

Next week, I am scheduled for a third treatment of Avastin. This drug doesn't seem to have the side effects of other chemos other than fatigue. I take naps more frequently now. The CA125 is down to 17, remember under 35 is normal, and other counts are holding steady.

We are now officially half way through the school year. I remember with homeschooling how we'd count the days to 90 til we could celebrate this date. With my oldest, of course, his first semester at college ended before the holidays. He's now swept up into another semester of challenging courses. The younger two are doing well. They are signing up for spring sports which is yet another sign that winter is passing.

I've been dreaming of a week at the shore during the winter season. A quiet retreat to comtemplate, write and savor the shore at a different time of year. Some have told me the shore on off season is a delight. I think a vacation would help. I feel a rambly prowling spirit which may be a bad case of cabin fever.

A New Year

2009-01-09T16:24:00.000-08:00

2009 begins on a brighter note than I would have anticipated just a few months ago. Back in October and November with daily increasing symptoms of disease, discomfort and distress I had begun to consider this year as my last year to enjoy with family and friends. I had set aside any plans for future projects and dreams. Now with a successful perientesis which removed three litres of fluid from my abdomen, stabilized CA125 and a new treatment plan I am feeling strong again.

The children are doing well in school. Their studies have improved tremendously and the teachers remark on their confidence and maturity. We enjoyed a wonderful Christmas with lights and presents and time together. Daughter participated in a live Nativity this year and both children performed in the Christmas orchestra concert. What a delight.

Now with a layer of ice on the ground and possibly more snow to come, I am looking forward to some new garden plans for the spring. Various fruit plants including some sweet rhubarb and some everlasting strawberries. I've always dreamed of having a small fruit farm. This will be small but also futuristic. I like that perspective right now. New perenniel plants as well. I look out at my drab sticks of garden now, shooting out from the wet snow and ice where soon color will burst forth. I can't wait.

Getting Personal

2008-12-23T05:23:00.000-08:00

Most people wonder when they hear of others being diagnosed with cancer, what it is really like. I know I did. Some seem to pull through and go on with apparent normal life and many still succumb to the insider attack. There are daily little things that are different that I pondered while showering this morning.

The first thought is hair. Everyone asks will you lose you hair. The answer is on some drugs yes, and others no and others most of it but not all. In the latter case it may as well all go because by the time you are gone the surviving wisps barely give cover. The other aspect is that ALL the hair goes. Think about that a minute. As I performed a more rare morning ritual this morning of showering, washing my hair AND shaving, I remembered how much a pain it had been in the past to take those few extra moments. Now the feel of nice smooth cleanly shaven legs is a pleasure but rarely performed. The hair grows in so sparse and irregular and slow that it is weeks until I'll shave again. Eyebrows? We learn to use makeup artistry to draw those normal face features in. Color? I've drawn to more of it since my diagnosis disliking dull, dark drab colors. And color in the hair? I didn't think I would ever dye my hair but in this as in other things my body has betrayed me.

This body is no longer mine. It no longer obeys me. First it took on this sickness without any invitiation. It disrupted my normal process of aging that I had prepared to meet face on with humor and good faith. Now my body aches and won't perform normal minor physical exertions without being exhausted. Now my body isn't whole. It has lost several important organs. Instead of normal menopause to share around the tea table with other female friends I was thrown into surgical menopause overnight. Instead of gradually graying with sophistication my hair after gem/cis looked as spare and gray as my 90 year old aunt's. This was truly dispair. I just couldn't face the mirror anymore but dreaded that growth line as color grows out. My favorite hairdresser suggested henna since my hair has so many chemicals in it. He said it would be easy to just put in and wash out when needed. After the first scary episode the results were not totally frightening so I've added some.

These are only a few thoughts for this early cold morning. Now let's have a cup of tea.

Post Script

2008-12-23T03:36:00.000-08:00

I am so happy to hear from friends who have been following this blog. If you request
an invite to the personal site, please include an email so I can reply to you with an
invitation. Rest assured that this info will be deleted from this blog site and will not
be posted. I do not have means to return reply to your comments posted here.
Thank you.

Blog ettiquette

2008-12-22T16:15:00.000-08:00

For those who may be joining me in this venture, at the left of the entries is a little blurb about me and the purpose of this blog which reads:

This is a brand new attempt to record my thoughts and experiences on this journey with ovarian cancer (ovca) and also maintain an update with friends and family with one posting on my progress and treatments. I was diagnosed with ovca stage 3A grade 3 in September 2005. Since I have received first line and secondary line treatments and am now writing my own map on my health and future as my recurrences persist.Hopefully what I record here will inform all those I love with my current status and also help me to process the issues directly related to my journey with ovca. To loved ones, friends and family, I don't intend to depersonalize our communications, but actually to intensify what I am able to pass on in a uniform means to keep everyone equally informed. My love to and appreciation for you all from deep in my heart.

The express purpose is to discuss and share a cancer diagnosis and how it impacts my life. It is not an opportunity to discuss personal issues that are unrelated to this topic. It is in particular NOT the forum to pass judgement on my or another's life decisions of which the commenter does not possess full and honest knowledge.

In the world of blog it is highly offensive to reveal someone's personal data without permission. This is a priority reason for rejecting comments. I desire the anonimity from many who google appropriate terms and find this site, who I don't know from the man down the street or the stray in California for that matter. Many have been invited from cancer forums who also deal with terminal cancer and issues that the average person doesn't have a clue about. It's offensive to these readers to assume knowledge where one is ignorant. There are many personal friends who read here to keep abreast of my progress in an easier format than writing tens of emails every month or so.

On the reverse, the commenter has the privilege of being shrouded in secrecy and darkness unless they have revealed to me their identity which I will keep confidential. Shooting from the hip with a concealed weapon is highly unethical. Thereby the necessity to moderate comments now that someone, who is shrouded in secrecy, has chosen to use this venue for their own angst.

I have specifically requested in a previous post that these types of comments cease and desist. I consider their continuance harrassment and will document such.

Further more, if someone has such grief about my personal life that they need to vent their judgement and call heaven and hell down on me, I am sure that to know those particulars they also know the address of my front door where they can in good Christian faith approach me with witnesses and resolve the matter.

In good faith, I am preparing a much more personal web site to which members must be invited by myself alone. Be prepared to identify yourself confidentially but you may request such an invite through a comment here which I will moderate. Or you may ask me directly through phone, snail mail or email.

I love you all and for the blessings and hope that a dear fellow victim of ovca gave to me through the depth and honesty of her blog journal up until the day of her death, I in turn wish to extend that to others. If dealing with a life of cancer and imminent mortality is difficult to handle then I suggest you frequent other lighter locations.

Christmas Lights

2008-12-07T16:15:00.000-08:00

Everywhere we turn we see the sparkle of Christmas flickering in the dark evenings and in the eyes of the children. A Saturday's stretching, reaching and climbing produced garlands and lights around our door and entry. Slowly and gradually the upcoming celebration is creeping into our home. My youngest son keeps us up to date with the daily countdown more accurately than the counter in the postoffice.

Thanks to an outpatient procedure this past week, the great discomfort I'd been experiencing has been relieved. I hope soon to hear a date to begin chemotherapy once again, this time using Avastin. The great wonder drug that gave me the past 2 years is no longer effective for me. The cruel fate of ovarian cancer is it's devious ability to grow resistant to most treatments. I look forward to whipping this curr one more time, albeit briefly, yet with some trepidition as continued chemo is never a desired treatment. It is hard on the bone marrow and wears the body down.

In steps forward for a New Year, I have made some drastic dietary changes. I've eliminated caffeine, most sugars (just a bit now and then), and have begun juicing daily and primarily trying to eat vegan. What a challenge but I am feeling good and doing well at this time. What little meats I am eating don't seem to do much harm and I feel so much better with much much reduced dairy in my food choices. The progression of ovarian cancer tends to involve some difficult bowel issues and I am trying to prevent or avoid that as much as possible with this new diet. Now to master tofu.

Great News

2008-10-22T09:53:00.000-07:00

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

2008-10-22T09:46:00.000-07:00

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

2008-10-07T07:06:00.000-07:00

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

2008-09-17T08:48:00.000-07:00

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

2008-08-27T14:49:00.000-07:00

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

2008-07-23T07:09:00.000-07:00

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

2008-07-05T04:43:00.000-07:00

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.

Miracle Elixer

2008-05-29T19:52:00.000-07:00

Once again thanks to this wonderful combo of drugs that my doc came up with in his research, my CA125 is down to 12 from almost 80 with just the first course of treatments. Today I received the first of the second course. This doc is one more of God's pieces placed in my life. I am learning to wait His placement of these individuals when they are needed and not press in my sense of timing. His provision is so perfect and puts my own attempts to shame.

The day was long and arduous but we made it and now I recuperate for the next few days.

Out of Egypt

2008-05-17T06:36:00.000-07:00

This was the final chapter from Breaking Free by Beth Moore.

The gospel is so arranged and the gift of God so great that you may take the very enemies that fight you and the forces that are arrayed against you and make them steps up to the very gates of heaven and into the presence of God..God wants of every one of His children, to be more than conqueror...You know when one army is more than conqueror it is likely to drive the other from the field, to get all the ammunition, the food and supplies, and to take possession of the whole...There are spoils to be taken!

Beloved, have you got them? When you went into that terrible valley of suffering did you come out of it with spoils? When that injury struck you and you thought everything was gone, did you so trust in God that you came out richer than you went in? To be more than conqueror is to take the spoils from the enemy and appropriate them to yourself. What he had arranged for your overthrow, take and appropriate for yourself.

Never Know What to Expect

2008-05-11T13:43:00.000-07:00

I am slowly recovering from my second gem/cis treatment for this month. It was pleasantly surprising upon receiving my bloodwork two weeks ago to find my WBC was as high as 4.9 and the CA125 had actually fallen rather than rising while waiting for the treatment schedule to begin. It fell from 77 to 68, which the doc says is allowing for error in testing, but I had certainly expected it to be well over 100. Most of the discomfort I had been experiencing is diminishing already. The consequent fatigue and weakness is very hard to deal with even when assuring myself that it is short term. Yesterday I actually considered using a wheelchair for the first time. The muscle fatigue is so deep and overwhelming. Today I am putzing and resting, putzing and resting, slowly getting some things accomplished. Doing as much as possible while sitting is very helpful. I am expecting it to be a challenge to complete six scheduled gem/cis treatments through September. If it actually aids in keeping the counts down it will be worth it. One down and five to go.

Daughter Link

2008-04-29T14:35:00.000-07:00

Today I bought a journal to begin to write down all the words of knowledge, experience, wisdom and insight for my daughter that I want to be certain to pass on for her maturing and adult years. No one should ever lose a parent, I know from all the time I've spent with my oldest homeschooling him through highschool, all our talks, all my lectures, all our tears, as a young adult I still have not said all that I would like to say nor am I certain he heard all I DID say in the tone and nature of how I meant it. Even deliberating over every word for my daughter, I know in my heart I won't cover everything. There will still be clueless questions and empty silences.

While searching for a journal, I pondered the idea that every parent should do this for their children, daughters and sons, even when they expect to share a very long and fulfilling life together. Getting down in words the love, the desires, the dreams, the experiences and understanding is so important. Life gets too busy and things are left unsaid or half said. It took me decades to glean the knowledge of the world and my God that I do have, as meager as that may be. I'd like my children to benefit from what I have learned, have freedom to learn their own lessons, and dream their own dreams, and be enveloped in the love of a Sovereign God.

Holding Steady

2008-04-13T06:31:00.000-07:00

There hasn't been much to report lately other than increasing discomfort and signs of growing cancer up until this Tuesday when I finally received a chemo treatment. After discussing several drug options with my doc, he opted to stay the course with the carbo treatments I had been receiving before being ill. I felt immediate improvement that day with irritating symptoms. The faith part is hoping that this low dose maintenance treatment will also reduce the CA125 counts that had begun to rise.

The grass is greening but the tics are out. The hyacynths are in bloom but I have a sneaking suspicion the chippies stole many of my bulbs this winter. Also need some bright perky pansies. Will pick them up this week. All in all we are holding steady, waiting for spring to pop in full bloom and the next bloodwork results.

Emerging

2008-03-19T11:27:00.000-07:00

My young son's class planted emporer tulips last fall with the Journey North migration program on the internet. They have a plot outside their school and a plot on the internet map where they can observe the budding and blooming of tulips all up the east coast. I had the opportunity to witness their excitement a week ago as they went checked their garden plot for 'emerging' tulips. This was the new word for the day: emerging. We counted 28 tulips leaves pushing through the soil. What excitement. I drove home to quickly scan my own garden and found not a single tulip leaf twisting in the soil. Now THIS week, I am happy to say we are 'emerging' also. We counted one tulip, one greening primrose and a small clump of narscissus or daffodils and what may be one hyacynth pushing up in the garden. My excitement almost eclipsed that of the kindergarten class. Further announcement of spring will come when the garden is in full bloom.

On the health side of life, my red blood counts are 'emerging' into a much healthier glow, but my white blood count is still struggling. Waiting until April 1 for my next scheduled appointment will mean a six week break since my last treatment. Since this appears to be a result of having received so much chemo compounded by the flu, I don't know when I will be able to tolerate treatment again, if the milder maintenance treatment will be sufficient or if a more toxic dose will be required to reduce tumor growth and if I will be able to withstand a full dose of chemotherapy again. Not much of a note to end on, but that is where I find myself at the time being.

Those Numbers Again

2008-03-12T07:00:00.000-07:00

This is the second week my chemo has been cancelled because my counts are not recovering from when I had the flu. I have had so much chemo in the past two years that the bone marrow isn't rebuilding fast enough. I am feeling good at this point, but know that a continued absence of chemo therapy will allow that ever critical CA125 to rise again which will mean much more toxic chemo to shrink the tumors once again. It is now a catch 22 it seems. If my blood counts recover in this next week, I'll still have a chance of getting back on schedule, otherwise we'll be looking for other options.

Community

2008-03-07T07:21:00.000-08:00

One thing I realized while in the hospital last month is the need for community and fellowship for my children. When I am absent, the flow of reassuring love enveloping them in a community of faith is so much appreciated. I encourage all our friends to not feel shy about visiting or being a part of our daily life. The safer the children feel in others' companionship the more likely they will receive comfort and assurance when the times are scary. We all need hugs both to give and receive.

Retail Therapy

2008-03-07T07:10:00.000-08:00

After a month of illness in our household, my doc says my lungs are recovering well. I had been hospitalized for three days the last week of February due to pneumonia and flu. It was a scare for everyone as my white blood counts fell to 1.2 and platelets fell as well. They had not recovered quick enough to have my scheduled chemo this week. The CA125, though, held steady. So we plan on next week for chemo.

Meanwhile, I took daughter along this time to meet my doc and visit the infusion clinic. He's a cool guy and the nurses are great. Having a picture in her mind of place and people involved may help her deal with my regular trips to Hershey which generally cause her considerable emotional angst. Afterwards we went shopping for spring clothes and treated to a nice meal in a restaurant. She enjoyed girls day out.

So another week of recuperation when I hope to catch up on the house and get some other tasks accomplished. Thanks so much for everyone's love and prayers last week. Our family so appreciates everyone's support and concern for each one of us. My first full day in the hospital was like party day with the constant flow of traffic from many friends. Love you all.

Reassuring News

2008-02-23T11:00:00.000-08:00

Two weeks ago my CA125 stumbled upward. We continued with the treatments and waited for a second bloodtest. I have just received word that it has fallen again to a lower range, yet higher than the consistent 3 it had been. It is still well within normal and a range is often common as it fluctuates abit. I was nervous this meant another upward trend and again more toxic treatments but now can rest with the current maintenance program for a while longer. The CA125 is not the only test to look at, but for me is a pretty marked sign for recurrence. The nerve rending anxiety of watching it can be emotional but keeping busy helps. The normal routine day to day stuff keeps life like it used to be and the thoughts of cancer at bay.

One project I've been working on is a family picture album of old pics from the early 1900s. It is interesting to relate to grandparents and great grandparents as young adults and watching them change as they've matured. It puts my own short history into perspective. It is interesting to place their lives into the context of world events and developmental accomplishments. My grandparents went from horse and buggy to cars, to airplanes, to space rockets to a man on the moon. Can you imagine? I've seen the man on the moon, space shuttles to established stations, the internet flow of knowledge and much more yet to come. Though more and more people and events, our world is shrinking to allow contact with people miles and miles away. I have prayer support in Australia, England, Africa, and most every state of the union. Can one have even imagined that size of community at the turn of the century?

A small insignificant number as the CA125 can change my whole perspective but in the history of ovca I am living at a remarkable time. Just 10 short years ago my diagnosis in 2005 would have been a six month sentence. Modern medicine grants me treatment to hold the symptoms at bay and give me a remarkable ability to continue life as somewhat normal. The research for ovca is ready to burst the doors open to potentially not only lengthening life but finding a cure. Please pass the word forward to not only be aware of the seemingly inocuous symptoms that bely ovca but also to further research and not let other gynie cancers be lost in the dust of progress left by progressive treatments in other areas.

Special moments

2008-02-02T09:23:00.000-08:00

My daughter has a little girlfriend over to play today. For lunch they made tuna salad,
fresh fruit and I gave them the depression ware and good glassware. Daughter set
the table with pretty placemats and matching napkins. Everyone else ate earlier, so
they are enjoying a quiet luncheon together. I hear their secret whispers and think of
Anne of Green Gables, perhaps I should hide my strawberry wine......

Blankie Times

2008-01-21T16:38:00.000-08:00

The other day both children asked if I'd come talk about cancer with them. They had questions. They were snuggled under the warm comforter on our queen bed, so I joined them. Many questions followed about why I had cancer, where it came from, why I lost my hair, what does cancer do--soon my youngest is off to find his own blankie returning to share its comfort. We snuggled in deeper and talked some more. Reassurrances and truth. The book I had just read recommended even when talking about the future and possibilities to keep focusing on living now. When the discussion turned to possible complications my youngest was "outta here" and off to another six year old adventure with blankie in tow. My daughter furthered the discussion with her anger and anxieties about my leaving her for treatments and her anger at the doctor for these trips.

I encouraged her to think about all the things I can still do with them and that the doctor is doing everything he can to keep me healthy. I reassured her she need not fret about being separated again if I should need to be admitted in the future. We have plan B to put into effect.

Then today she asked if I'd come snuggle under the blanket again with her baby. She had more cancer questions. When I arrived she and baby were under the comforter with soft pillows. She assured me her baby would help her. So flat on our tummies under the comforter, searching for cartoon characters in a Waldo maze, we talked about what exactly cancer does to my body and that I may die. We talked about those whacko cancer cells that don't obey the rules and how their wild growing can cause problems and what can happen because of those problems. It was safe for her to ask these questions while we looked for Bubbles, Blossom, Buttercup and Professor Utonium. A little disjointed for me, but it worked for her. We are planning on taking my daughter with for the next doctor trip so she meets my wonderful doc and so cool nurse. Of course, we'll follow up with some retail therapy on the way home.

Sigh of Relief

2008-01-12T03:49:00.000-08:00

The great news is that even with a three week break due to Christmas scheduling, my CA125 is still 3. I can perhaps not fret so much knowing the carbo is doing its job, for now.

This unusual January weather is confusing all of us, Ken says even the grouse are confused. I just know February will whop us. I spent a wonderful day at school yesterday with my daughter observing her in her classes. School is much different than I remember and I can understand what is causing her some difficulty now. We have been blessed with terrific teachers for the two this year for which I am very grateful. It has made the adjustment less traumatic than it could have been.

Now that the Christmas holiday is over I begin checking out my perreniel garden for signs of green. It is my spring welcome each year and I so thank the good friends who helped me transfer it here last summer. God bless you all.

By God's Grace

2007-12-31T08:38:00.000-08:00

Last year this time I was crying at the drop of a pin or the sight of a friend. I cried when I held my children and whenever I thought of future beyond the moment. Last year a doc had told me I was to receive only palliative care and nothing would give me more time.

This year after a year's continued treatment I have received the grace from God of another 12 months and can look forward to more. I've accomplished a Christmas of memories for the children including atleast stamping my Christmas cards before my typical June mailing. They may actually go out this month, so no Christmas in July for friends and family from me this year.

Looking forward, yet not knowing the length of my days, I want to use the time I have wisely and productively. There are things I wish to do with the children and projects I wish to finish. I've a list to check off and keep me focused on essentials but before all, I give praise to a mighty God who saw fit to provide me with a great doc and excellent care.

Taking a Deep Breath Here

2007-12-15T11:51:00.000-08:00

It has been a hard week in the ovca worldview. One friend from my forum board has suffered this beast for six years, has lived bravely through hospice for the past seven months and once Thanksgiving arrived began to hope to see Christmas as well for one more year. Recently her health has deteriorated quickly and this week she has been taken by ambulance with unmanageable pain. She had maxed out the pain meds that could be given to her at the facility where she was housed.

Another woman also on this forum, who was diagnosed in 2004, has been told there is nothing more they can do but provide palliative care. Her tumors have invaded her entire abdomen and associated organs.

Over this year the ovca population has lost several great women whom I have come to know and love for their encouragement, strength and wisdom.

In comparison, my previous oncologist had prescribed palliative care only for me last December. By God's grace I am now under the care of a proactive oncologist who has an open mind and a bold approach. I have lived strong with a reasonably good quality of life this past year. Think of what has been accomplished besides caring for my home and family. We moved into a home that required a huge amount of work for months. The packing and unpacking and settling in has gone on indefinitely but is being accomplished along with activities, school and life in general. I can really not complain. I have gained a full year, but the above developments of this past year presses the eventuality of this diagnosis upon my heart and mind. The truth truly is that only God knows our days. Each day becomes a gift of opportunity.

Nerves

2007-12-07T15:24:00.000-08:00

Great news, my counts are still low, a 3 this time. We have begun a maintenance program of three weeks on (one time per week) and one week off with carboplatin. I am anxious that this less toxic treatment will keep those numbers down. This entire journey has been an experience of trusting in God because everything truly is out of my control. My doc attempts to use the newest potential treatments to keep me healthy and strong and hold that cancer beast at bay. I am suffereing from more nausea that expected, but hopefully that will pass soon. The drugs I recently used are very new in use together for ovca treatments and I have been the beneficiary. He is extremely knowledgeable and I trust I will receive the best of care while at Hershey.

Christmas is fast approaching. I can't believe it has snuck up on me this year. We still have decorating to do in the midst of continual unpacking. The children have enjoyed a week of tobogganing on limited snow and winter weather and temps have fallen upon us. I mind the cold terribly as it aggrivates my neuropathy from the chemo. My fingers suffer considerable pain and numbness when cold. The other side of surgery has been this is the first winter I am sleeping without socks on my feet. Keeping my feet cool seems to help reduce the nightime hot flashes. Other than these details I am two years into treatment of cancer and moving well into my third after diagnosis. Statistics give ovca patients five years post diagnosis. We are waiting and hoping on God's provision of a new treatment that will master this beast and set me back on my feet.

Feeling Good

2007-11-24T07:01:00.000-08:00

It's post Thanksgiving with turkey and stuffing still in the fridge. Lots of cranberries in chutney and jello, as well as a jar full off fresh fruit cup. Hmm. Pies are gone though along with other baked goods.

I'm feeling great. Am tackling some bigger projects and preparing to make the most of this week before yet another treatment on the 4th. By this time I am generally feeling well enough not to want to go back, but know that my going back is what makes me feel so good. I will begin a new treatment for a maintenance program in hopes to hold down the numbers with less toxicity. The doctor has yet to decide the schedule whether weekly, biweekly or gradually lengthening time between treatments.

Spent yesterday preparing a control journal re Flylady.com which contains all the necessary health, academic and misc information along with all necessary contacts, friends, family and professionals. All the personal info of the family in one journal. My family at your fingertips, so to speak. I hope it will be helpful. Well off to my next project. I hope everyone enjoyed a great holiday.

The Magic Formula

2007-11-07T13:20:00.000-08:00

In response to the question concerning the results of continued use of a drug, the toll on my body is an important factor but also that nebulous time when resistance will form. The cancer has already developed a resistance to doxil and topetecan after only five courses. The Gemcetibine/cisplatin combo treatment is new and very effective for most ovca patients. But it is hard on the bone marrow in particular. Since I seem to respond so effectively to this combo and since continued current use is not going to eliminate the cancer or offer me a time of remission as the cancer is too aggressive, I have opted to use it only as needed to bring my counts down and shrink the tumors.

Each change of drug brings it's own mystery factor. Will this drug work, how effective will it be, will I develop a resistance to it thus eliminating its use. The maintenance drug will likely be carboplatin which was on of the first I used back in 05/06. We don't know how it will work in this plan. We hope and pray it will be a stop gap for 6-12 months, but no one knows. After that we use gem/cis again or reach into the grab bag and pull something else out. There are some really exciting things happening in research for ovca right now but when they will be approved and available for use is a question. The next question is will my case no longer be a practical application for the new treatments.

Those Magic Numbers

2007-11-07T08:26:00.000-08:00

The gemcetabine/cisplatin treatments have done it again. My CA125 count is down to 4. We discussed with my gynie/oncologist yesterday discontinueing the gem/cis and using another drug as a maintenance treatment. My objective is to save this gem/cis for future use as I respond so well to it when my counts go up. The question is what drug at what dose will keep the numbers down for me and how long.

So this week and next is my last on gem/cis for awhile. Today I am tired and tomorrow is a very busy day and Thursday is notoriously my worse day after this treatment. My body just crashes and refuses to go any further.

Every day is a First and a Last

2007-10-23T07:08:00.000-07:00

Every day is a first and a last. We start the day new and fresh with a clean slate no matter what happened the day before. We move through the morning waking up abit more with each task. By 9AM we have already had a last, a last morning, another last goodbye. We drop off at school with kisses and hugs, they run through the door and I cry. Then I fill my day with as much busyness as possible until, oh joy, it is 3:20 and I can once again have my children. I pick them up with hugs and excitement. I once again have my children with me, I hear their voices play, I'm making dinner and learning about their day. We move through the evening with many more first and lasts that hardly go noticed in the activitity, then we come to bed time and another last. A last day to hear them, talk with them, love them, hug them. We read stories and answer questions, soothe fears and plan for the next day. We kiss and giggle and I tuck them in with tears in my eyes and pray to my God for one more day.

Pleasures of Music

2007-10-21T03:08:00.000-07:00

A heart's desire has always been to hear music played as a family, though none of us yet are terribly proficient, competency at our individual levels helps. Youngest is playing violin with the strings program at school, as is daughter playing the cello. We are working on our first song to play together: Good King Wencislaus. Jingle Bells might be next as that is in both their lessons. Son desires every instrument he sees and has already made music from a saxophone, surprisingly, with his immature lungs. He craves a trumpet as well. Watching daughter with her form on the cello, I can imagine her playing a harp beautifully. If anyone has one of those hiding away in their attic, a harp that is, we would greatly appreciate it. As for other instruments: guitars, base, cello, saxophone, trumpet, drums (must come with a padded sound proof room included). Our home is their home, so to speak.

Looking forward to a holiday season of joy and music.

I can relate to this

2007-10-18T05:21:00.000-07:00

Leroy Seivers, diagnosed with a brain tumor, told Ed Koppel:

I'm not a good gardener. I move the trash and things like that. But for the first six or eight months, I bought no clothes because I didn't think I was going to need them. I actually wrote about it on the blog and got a big response. I went out and bought a pair of shoes, which was a big step. In the same way he was talking about planting the perennials. In some way, you're sticking your thumb in the eye of the cancer. But it's a gesture of hope that I'm going to be around long enough to use them.

I know Where he's coming from. I weigh every purchase with its cost effectiveness, especially consumables. I also walk through stores with blinders on so I don't see impulse purchases that would only prolong the internal debate. Then there are other items that I have procrastinated for 'future' buys before, that I am saying "I really want this no matter how much time I have. I want to enjoy this".

Everyone who knows my perennial garden can understand this statement of hope for life. Every winter I have stood at my window waiting for the first peak of growth and color. Now that search has so much more impact on my life perspective. A friend gave me my high school yearbook quote which said "Hope is a risk that must be run". I still live my life by that thought. Hope and faith walk hand in hand.

Treatment and progress

2007-10-13T12:02:00.000-07:00

Today, I am coming back from Tuesday's treatment. Wednesday was terribly busy, Thursday I slept, Friday I putzed and took it easy, today we moved boxes and two shelf units and my sewing machine (yeah!) with the help of friends. It seems forever that we have been working on this new home and to look around now, it is a completely new home having no resemblance at all to the building we purchased back in March. Every inch has been painted, every square foot of flooring replaced and now carpeting and furniture are moving in.

On the health front, we have discovered through some scientific clinical trials that antioxidants from cranberries multiply the effectiveness of chemo treatments for ovca. I have been daily supplementing cranberries with the report that my CA125 count has fallen from over 88 to 8 with only one series of treatments. This is extraordinary. The discomfort I was feeling has completely disappeared and other than fatigue from my treatments themselves, I am feeling fine.