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.

Those Magic Numbers

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

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

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

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

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.