Getting Personal

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

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

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

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

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.

Miracle Elixer

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

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

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

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

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

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

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

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

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

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

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

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

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.