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.

By God's Grace

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

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

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

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

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.