Ovarian Cancer Journal

Dear Blog Readers, This is Karen posting for Kathy. This early am she passed away very peacefully. Thank you all for the wonderful support, thoughts and prayers sent her way. She was a real fighter but the disease finally took it's toll. We hope to have her Celebration of Life at The Lofts, early afternoon, this Sunday.

Monday I had labwork done and got the OK to go ahead and get a paracentisis to see if there was any more abdominal fluid that might be removed for comfort.

After about 3 hours of waiting in admission and on a stretcher while they waited for a room to open and the radiologist debated further with my MD about whether my sodium level was too low (it was 119, the cutoff level ), he agreed to look under ultrasound and see whether much fluid was present; he took off the max he felt he could get, about 0.7 liters.

He indicated that there would not likely be more fluid of any significance, so this would be the last time the procedure would be of any benefit.

At this point, I can eat a little more than previously, and I will get in as much as I can while I can! Nausea is still quite a problem so there is a limit to the quantity. Going forward, we're just playing it by ear....and planning how to move the furniture to accomodate the hospice bed in the front room when the time is right.

Tomorrow we will be meeting with the hospice chaplain and social worker to discuss the logistics of a celebration of life service and related matters. Since Julie is out of town, she will not be there, but David and the boys and Mary Rosinski will be there (for music planning, among other things).

I feel it's important for the family to plan since this is for the living primarily. The current plan is to have a separate function in Michigan since so many families are there. Dad mentioned he would like to be involved in planning that. Since cremation is involved, the memorial/celebration can be scheduled for the most convenient date for people. Brad, Lane and David will fly up to be with the family.

I continue to get many (short, thank you!) calls , letters, emails, prayers and other support. Thank you all so much. It has all helped me to continue to function up to this point, and I so appreciate you all and your efforts.

God Bless you all, and I am so happy to be here to still express that sentiment and my love for you.

Kathy

Here is the latest on my status, - a number of people have been asking and this seemes a good place to provide more detail than I can on each phone call before my voice runs out! I had a lovely email from Aunt Marge and Uncle Tom, encouraging me, among other things, to take advantage of any comfort measures offered me that don't have a high potential for side effects, even if only short-lived. I heard similar thoughts from others. The procedure is very similar to that for abdominal tap, but if the fluid is removed too quickly, the lungs begin to spasm and shortness of breath becomes a problem. They conteract it to a certain extent by removing fluid slowly, but some will happen anyway as the lung re-expands. I decided to go ahead and have an evaluation to determine where the most fluid was present (abdomen or lungs), which would have the least effect on my serum sodium, (has been pretty low), and whether it would be worth considering removing the fluid from the 2 areas separately. Dr. Luchowski recommended removing the pleural - lung- fluid first, and then doing the abdominal fluid next week. In order to kep my sodium from going any lower, the hospice found me some 1 gm salt tablets to tke 3-6 times a day, and I was put on fliud restriction of 1500ml a day liquids. My sodium level will be checked again Monday, and if all is well, the paracentesis will be done. The salt tablets, being so concentrated, are difficult to tolerate, so timing is important! The thoracentesis helped a lot, and I can breathe easier, although there is still enough fluid to make me short-winded after about 5 minutes of talking. I'll be having my labs drawn again tomorrow to make sure my sodium is high ebough to havr more fluid drawn off (which brings sodium with it), and to check my clotting status. I was offered the option to consider having a semipermananent drain in both area that would prevent my having to go to the hospital so often since it can be done at home - I'll be weighing that option, depending how long it will be needed, and how rapidly the fluid reaccumulates. Wish I had a crystal ball! So...that's the latest. David is a model caretaker, and the boys are chipping in as they are able... Thank you all for your input and insight, as well as prayers and calls. Love to you all, Kathy I now ...."understand from the depth of of my emotionsa being that it is in the acceptance of pain and suffering that we can transcend it, leave it behind, cease to want to defend ourselves by standing truth on its head in blaming and raging, that we can move onward, accepting and finding accepance in peace. There is no way to make the process as easy as the words, nor can you direct it. If you keep the top of your head open, your feet find the path." -by Lucy Rees, "The Maze" _________________________________________________________________

Admittedly, I have not done a great job of posting regularly as I had hoped. But life has a way of intervening. Since I don't know when I might have another opportunity to post, I will try to recap as best I can.

As I sit here in "my" room at our home in Pelzer, I can see a family of cardinals frolicking in the trees outside my big picture window. I have been happy since we relocated here that we made the move, because it has enhanced my quality of life in terms of comfort, space to share with loved ones and visitors, and overall comfort. It was a good move and I must thank my family once again for making it happen by physically "carrying" us to our new space as they say down here in the South.

I'm still having trouble saying with no doubt or hesitation that cancer is the best thing that ever happened to me, as some people claim. However, it has brought me so many unexpected blessings that I can easily admit to many benefits of this disease.

I had read and heard people speak of the outpouring of gifts from every direction when you have cancer. Now I have had the chance of a lifetime to experience it first hand. Family, friends and even relative strangers have enveloped me in a cloud of love and caring that can only be understood once you are in the cloud.

Mary, Sarah and Lea all hopped in their car and drove down just to be with me for 36 hours, to see if there was anything I need and spend some precious time with me.

Loved ones have done things for me that I'm sure they would just as soon not, helped me discuss and research difficult topics, tried to protect me from stresses and strains as much as possible, and even held their emotions in check so as not to add to my burden. In other words, they have taken on as much of the burden for me as they possibly could to help relieve mine, even when inconvenient or distatsteful.

I know many wonder where I am in the disease process and "how much longer" I have. I certainly am at the point where there is absolutely no way to tell. There are new, sometimes alarming, physical developments some days, and I realize that at any time, a new development could become the last one for me.

On the other hand, I have days like yesterday when I could barely walk when I woke up, yet during the course of the day, my appetite was ravenous, I ate nonstop all day and became progressively stronger. By the end of the day I was feeling great and much stronger, and today is another good day so far. So I just never know...

I still sleep from 10am to 10pm, spend much of the day in the recliner chair and on the couch in the evenings. I do tire easily so my caretakers have been trying to manage the flow of calls and visitors. I hope we have not offended anyone, and certainly want to talk with and see people as much as possible.

I am blessed to still be here and able to enjoy all the loving care. I thank everyone, whether they have been able to call and visit, or are busily sending prayers my way, for your support. I feel it is making a difference in my quality of life, if nothing else, and I love you all.

La familia: the family, our tribe of our origin which shapes who we are, what we believe, our attitude, persistence, willingness to learn and take risks; often, what, who and how we love.

The family can be the source of extremes - intense hatred, love, negligence, abuse, support and immense strength.

It is hard to understand at times what determines which characteristics predominate in a family. My own family was blessed with an abundance of the positive virtues – willingness to always lend a helping hand; love, warmth; hopping on a plane at a moment’s notice to be at a relative’s sickbed or traumatic event; giving up a weekend to help with home repairs or offer moral support. God truly blessed us.

I most recently experienced the force of family dynamics in the past month, when I found it necessary to move from our Greenville condominium into a building we own down in the sleepy little town of Pelzer.

Adverse effect on finances is a reality for many of us with cancer, so we knew we would have to eliminate the hefty mortgage on the condominium and take advantage of our mixed commercial/ residential building down in Pelzer which we own free and clear. The Pelzer building has required some extensive renovation. David has his woodworking shop in the front, and our living quarters are in the back.

I have been debilitated because of surgery and treatment for the past month, so there was no was way I would be able to pull off moving us. David has been busily working on the renovations, so he did not have the time and energy to set up the move.

That’s when my family came to the rescue. I told them my dream is to be completely moved in time for Thanksgiving. Once they knew I was serious about this, they went to work setting up a schedule.

An email was broadcast to the family inviting them to participate in the moving, painting, building, packing and unpacking and various tasks. The calendar filled up as people changed their work schedules, made their plane reservations, and gathered up their tools to bring with them.

Moving date was set – Saturday, November 18. I was in a haze the last few days as I sat and watched my siblings empty drawers, tape and label boxes. But here we are – I am in my recliner in the living room at Pelzer, and they are now emptying those same boxes into the appropriate drawers and cupboards in our new location.

Aunt Anne will be here next week to help with more of the organizational tasks. Karen will be here the following week to help finish up the moving and help me organize papers and legal documents. Mary will be here December 8-12 to work on more unpacking and organizing ( there is an endless supply!)

So....before Christmas we should have it all in place (as I dream of sugar plums and fairies along with my finished renovations!)

I owe my heartfelt love, gratitude and thanks to my wonderful family for pulling this off - it could NEVER have happened otherwise. And without this experience of a terminal illness, I could never have truly understood the depth of love and caring there for the asking from family and friends. This is one of the most profound blessings I have received in this past year - the gift of such an extreme outpouring of love, support and assistance.

I thank God for this chance to know and understand the essence of life and love.

When I was a young mother, I had a terrible case of the flu,and was immobile on the couch. As I dozed in my feverish state, I vaguely heard dishes clattering in the kitchen from my boys about 6 (Brad) and 4 (Lane). A short time later, the boys appeared bearing a tray laden with tea and toast. They sweetly placed the tray on the coffee table and helped me sit up so they could spoon feed me.

Fast forward 16 years. I have received a diagnosis of ovarian cancer within the past year and have just had my 4th surgery, leaving me quite debilitated. Out of the blue, my older son, Brad called and offered to spend the rest of the semester with me. His plan was to cancel his current semester and retake it in January 2007. After a serious discussion about the logistics of being a full-time caregiver for your mother, Brad assure me he had thought it through and is committed to the plan. He gets up with me at night, changes my ostomy bag, keeps track of my medication and makes sure I get things on schedule, etc.

Lane, my 20 year old, in his second year of college, does not have the same flexibility as does Brad, but is home every weekend and spends hours at a time with me. He calls frequently and seems to be willing to indulge my desire for discussion of philosophical topics.

I am so thrilled to have this opportunity to get to know my sons as they are maturing, and to experience first-hand the care they are willing to provide. I thank God for these blessings every day.

This is Karen posting for Kathy.............on Friday Kathy had an appt for her 3rd treatment in the trial. After review of her symptoms with Dr. Miller the decision was made to further evaluate with a CTscan. That scan revealed a narrowing of the small intestine and distended colon. After discussion with Dr. Miller, Kathy was taken to surgery that evening. That surgery resulted in an ileosotomy. This of course removed her from the trial. Kathy was in a very weakened condition prior to surgery due to weeks of near nil nutrition. This procedure should allow her to eat, possibly as soon as tomorrow with release from hospital back to home maybe by Thursday where home care will be provided per her insurance company. Further ramifications of the surgery and additional decision making have been postponed for now.

Currently Kathy is unable to comfortably talk on the phone as she still has an NG tube. People can email if you'd like but her time on the computer has been very limited.

For 7 days I've pretty much been on a clear liquid diet. I have managed to sneak in a few servings of step 1 baby food (Karen says less than her 10 month old grandaughter eats). My sweet sister Karen has foregone the opportunity to see her new twin grandaughters enter this world yesterday, October 8 - the ultimate sacrifice to be here in this hell hole with me...that is love.

(So now it's Karen writing for Kathy as she has neither the strength nor desire at the moment)...Today is Monday, we arrived at Wake Forest Cancer Center at 9am as scheduled. At 1pm Kathy was finally given a bed in the Day Hospital on the 5th floor. At 3:30pm the IP infusion was started and it is now 8:30pm and she still lies attached to the IV's. This is Kathy's 2nd treatment in the study, two more to follow on the schedule now of this Friday and next Monday. What small amount of baby food Kathy ate earlier today has just resurfaced. Eating is not possible at the moment and drinking is minimal. But that hasn't kept her from watching a program on TV today about pizza and dreaming about eating some. The other night she dreamt about feta cheese, smoked turkey and german mustard. Just reminding her now, she says YUMMMM, followed by feta cheese and sundried tomatoes.

The treatment is harder on her she thinks because of more gastrointestinal disease so the instillation of the fluid compresses on things and adds to misery of gas and extreme reflux. It's an unknown how much this will respond to the treatment as well as the decrease in ascites, hopefully a big impact.

We've had discussions about the treatment here, lack of sticking to a schedule, slow response with anti-nausea drugs. Dr. Miller, Kelly and the other nurses who have cared for Kathy have been nice, but this machine moves slowly. We hope we've worked out things for the next treatment, to move the schedule along more efficiently, such as having her blood work done on Thursday, coming into the Cancer Center Friday at a later hour and me being the transporter of Kathy in the wheelchair as opposed to waiting for official transport to arrive.

As it looks right now we will be staying in Winston-Salem until next Tues.

Yesterday came off without a hitch. My abdominal catheter was placed, blood samples drawn, chest X-ray and EKG completed. The paracentesis resulted in about a gallon of fluid withdrawn - I weighed 10 lbs less afterward. The catheter is a little uncomfortable, but tolerable.

Today began slowly - we arrived at 9am, waited a while to get admitted to the hospital, finally got into a room on the 11th floor. Another paracentesis was done, withdrawing 0.6 liter. A half liter of fluid was infused into my abdomen to give the drug a medium to move around inside the abdominal cavity. Next step was for the drug to be administered over 3 hours. And then....

One hour went by, two hours passed and I was told several times that the study nurse was paged and hopefully would show up soon with the drug. Eventually, she came in and said she had bad news. The drug was nowhere to be found in the hospital even though the manufacturer assured her it would be received that morning (why they waited until the morning of is another issue).

When the study nurse left to try and get the package tracking number to determine the whereabouts of the missing drug, I got on the phone with the manufacturer's study coordinator. She gave me a song and dance routine - first it was the distributors fault, then it was the fault of FedEx. After it was all said and done, it was determined that FedEx had held the drug at their Greensboro facility, about 20 minute drive from Winston-Salem, because they had "plane trouble". At this point, it was 4:00 pm and even though Karen would have been willing to drive over to Greensboro, there was no way they could begin a 9 hour protocol at that late hour.

Karen and I were fussing and fuming, hashing over our options, without having any way to really vent our frustrations. Bottom line was: no drug today, and no drug tomorrow because there can only be 3-4 days in between doses, and the chemo personnel do not work weekends. So the next window of opportunity was Thursday or Friday. I decided to go for Thursday, to minimize the waiting time.

In the meantime, I had an extra 1/2 liter of fluid in my abdomen that was deliberately put there, and would continue to increase over the time until my treatment. So I asked to have the fluid withdrawn before leaving the hospital. This is not a painless procedure because there is no way to screw syringes on and off the catheter without pulling on the stitches holding it in place. But the 1/2 liter was taken off, plus an additional 150ml. Back to Extended Stay we went, knowing we have a free day tomorrow. Maybe we'll visit Old Salem.

As Karen and I were debriefing the situation, we realized that it was just more of the same that I have experienced with the "health care" system, as have my fellow survivors. You have to look out for yourself because the system does not provide for patient advocacy. I should have been on the phone last Friday assuring myself that the drug was already sent or would arrive on Monday, rather than trusting it to busy, distracted people with many other issues of concern than just my well-being.

And so it goes. Lesson learned - again.

Yesterday, I finally learned all the details for my trip up to Wake Forest the next 2 weeks and the treatment itself. Here is what the schedule looks like:

Monday: 8am, check in at the Cancer Center to sign informed consent

Monday: 8:30am, radiology to have the abdominal catheter placed and fluid drained. Also, albumin will be administered to compensate for some of the protein being removed; chest X-ray and EKG

Tuesday: 7:30am, hospital admission for the day; infusion of the study drug over 3 hours, then 6 hours observation period; hopefully then discharge from hospital

Wednesday and Thursday: ????? depending on how I feel and how Tuesday goes

Friday: 7:30am, hospital admission for the day; infusion of the study drug over 3 hours, then 6 hours observation period; hopefully then discharge from hospital

Saturday, Sunday and Monday: Hopefully back home in Greenville

Tuesday: 7:30am, hospital admission for the day; infusion of the study drug over 3 hours, then 6 hours observation period; hopefully then discharge from hospital

Wednesday and Thursday: ????? depending on how I feel and how Tuesday goes

Friday: 7:30am, hospital admission for the day; infusion of the study drug over 3 hours, then 6 hours observation period; hopefully then discharge from hospital

My sister Karen is flying into Greenville on Sunday October 1 and returning to Michigan on Monday October 16. We will be driving up to Winston-Salem and staying at an Extended Stay America in a studio/efficiency unit for the first week. The second week, we'll play it by ear. I hope to have good news to report soon!

Anyone reading my earlier postings knows that nutrition is a big concern for me. I know that we literally are what we eat - and that if we don't eat, we, quite simply, aren't. So a comment made by my physician this week took me aback, and gave me much to consider.

I went in to talk with him about possibly beginning IV nutrition (TPN, for total parenteral nutrition) for a month or so, because I have had difficulty getting enough calories in the last couple of weeks while waiting for the clinical trial to begin. Despite that, although I have lost some body mass, luckily I had fat stores, so a lot of my calorie deficit was made up from those, and I have not had a big weight loss.

My physician said "Being malnourished is a given for women with ovarian cancer who have been battling it as long as you have and still have extensive disease. However, studies have not shown that doing TPN will change the outcome." TPN, he reminded me, is a rich culture medium for bacterial growth because of the protein and other nutrients. When people do TPN long term they are usually at home and therefore even less likely to maintain sterile conditions than in the hospital. Another factor, he reminded me, is that I'll be going under the care of another physician for the clinical trial, and she should be involved in the decision.

These were all valid points, and I had to agree with his reasoning - for the time being. I did do some investigation to see what the literature says on the topic and found some great articles in the Journal of Clinical Oncology under the "Art of Oncology: When the Tumor is not the Target." Here is a quote from one of the articles:

"A FEW PATIENTS BENEFIT

Although most patients with advanced, metastatic cancer will not derive any survival benefit from artificial nutrition, certain exceptions do occur. Patients with inoperable, malignant bowel obstruction, a lack of symptomatic involvement of critical organs (eg, brain, liver, or lung), a relatively indolent course of disease, and a good performance status can have prolonged survival with the use of enteral or parenteral nutrition. However, these patients represent a small subset of patients with advanced cancer. The use of artificial nutrition in patients with advanced malignancy should be considered only under exceptional circumstances."

My physician and I agreed that if, after removal of the abdominal fluid and completion of the clinical trial, I still have difficulty eating, I will see a gastroenterologist or otherwise be evaluated for the cause of the eating difficuty. If it is correctable, appropriate action will be taken. If not, TPN may be a consideration.

In the meantime, while waiting to see if the clinical trial will be completely successful in reducing my tumors, I don't plan to starve to death . If it looks like that may be a possibility, I will definitely be taking up the issue of TPN again!
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"Acceptance of the unacceptable is the highest state of grace there is. Let the present moment exist - let it be", Eckhart Tolle.

This is how it goes with an ovarian cancer support group. One of our members passed away last week after fighting pretty continuously for 1 1/2 years. Another member who was in remission for 1 year had a recurrence and has had two surgeries, the last of which resulted in a colostomy. We have one member with both a colostomy and an ileostomy that has been going for 3 years with chemo off and on. A good friend in the group has been on parenteral nutrition (IV feedings) for several months now, and on chemo pretty continuously for the 2+ years since her diagnosis, but still manages to ride her horse competitively and stay active with household and barn chores. We do have members of the group who are in remission, and their continued participation gives the rest of us some measure of hope.

One might wonder - why would anyone want to be a part of that group? Sometimes, can't ignorance be bliss?

When I was first diagnosed and considering whether the support group would be right for me, I heard differing opinions on the value of such a group. The obvious reasons for joining include having a source of first-hand information from people who are uniquely positioned to know exactly what you are experiencing. They can help you know what to expect and coach you on resources, tips and tricks. They are there for you in a way no one else can be.

There is a downside that was mentioned by some - the constant reminder of the devastating nature of the disease as it is experienced by other group members. People who are sure that because they experienced a certain side effect, everyone else will also. The inevitable loss of members over time, not to mention recurrences, surgeries, chemo, clinical trials...and the list goes on.

After a while, though, the group begins to feel like family, and some of the members, like sisters. You can discuss what no one else wants to hear or talk about or understand - how it really feels to know with certainty you are not invincible or invulnerable anymore; how to balance hoping and praying for and wanting a good outcome with being realistic about needing to prepare to let go; worries about what and who will be left behind, things left undone and the pain loved ones will experience.

That kind of relationship and interaction is one that many people don't get to experience, either because they choose not to think about it and plan, or because death takes them by surprise. Most people don't have the experience of sharing these thoughts with someone who says "I know", and it truly is the case. But when you can have that kind of relationship and those kind of conversations, it helps you to gradually do what you must do to be at peace with the disease and your life - to accept the unacceptable.

What is the unacceptable? Anything that we are struggling with and cannot control but don't want to deal with - be it physical or emotional pain, nausea, a change for the worse in your counts, loss of someone or something we value highly, a situation that seems just too difficult to endure, or running out of options. Of course, there are often things that we can try to make the situation better, and we should. But when it appears that may not be enough, and our best efforts do not succeed, there is still one thing we can do. We can accept that the situation is what it is, that we don't know how to change it, and surrender to the fact of the matter. That acceptance is not giving up; rather, it is giving in and acknowledging that there is a force beyond our control at work, and that we can't see the big picture (some would call it the Divine Plan).

Stopping the mind, tuning into the present and our being as a part of the life force of the universe, is a way to make the unacceptable moment somehow more acceptable. We lose the sense of heaviness and all the baggage that goes with it, and can accept that what is just is.

"The opposite of life is not death. Birth is the opposite of death. Life is eternal"
- Eckhart Tolle
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Despite the waiting and the fears about progression of my disease, I have been able to eat enough and be physically active enough that I don't feel like I am debilitated. So there is something I have been able to control - something positive.

Here's another positive - it has given me time to do more research on the drug therapy I will be receiving, and what I have read has made me even more optimistic.

Let's see....what else? Well, I've gotten through some more boxes that needed sorting and things thrown away - that's a definite positive! I've made some progress organizing my computer photo albums, and printed out some of the photos. I've sorted through files and organized papers - more throwing away!

And let's see - I'l have time next week to do some more!

The latest information I have from the clinical trial nurse is that Karen and I will have to be at Wake Forest/Baptist Hospital early in the morning on Monday, October 2 for the initial procedure which will be placement of the intra-abdominal catheter and drainage of the fluid (this is not as painful as it sounds), blood work, EKG and chest X-ray.

Then on Tuesday, I will probably be admitted to the hospital for the drug administration and observation, which I imagine will take most of the day. There is an uncomfortable expected reaction known as the "cytokine release" effect that is due to the activation of the immune system and killing of cancer cells. This tends to be the worst with the first dose. It is described as an intense flu-like reaction. The reaction is pretreated with ibuprofen and fluids.

My second treatment will be on Friday that week, and Karen and I plan to stay in the area rather than make the 3 hour drive back and forth Wednesday or Thursday. If all goes well with Tuesday's treatment, I am told, I will be admitted to the "day hospital" for Friday's round.

My third and 4th treatments will be the following week, Tuesday and Friday. That will be the end of the treatments, and then I will have to go back for 5 follow up visits over the next 6 months.

The treatment is designed to stop the production of fluid in the abdominal cavity during the course of the two weeks of treatment and for, hopefully, many months after. If I am fortunate, there may be a longer-term immunity. I hope that will happen, but at the very least, this will give me more time without fluid accumulation and perhaps a chance to do other treatments if warranted.

My brother Mike sent me a message of encouragement with a quote from the one of his favorite movies, Galaxy Quest, "Never give up, never surrender!", along with this photo from the movie. He noted that the picture represents the Commander as me and the aliens as the nasty cancer cells in my body. Obviously, it is a fierce struggle, and it does feel that way a lot of the time.

In thinking about my response to his message, I remembered reading an essay in the Spring 2006 issue of Cure magazine about the "Tyranny of positive thinking", by Kathy LaTour. She talked about her fear, 20 years ago when she was diagnosed with breast cancer, that if she allowed herself to feel or express negative emotions, she would be hastening her death from cancer. She went on to say that in the years since, she has met grumpy, irritable, angry people who survived and others who were cheerful and engaged in life who died.

Researchers have shown that women with breast cancer who had psychological counseling had better immune system function than women who did not. However, this has not been shown to make a difference in survival. In other words, it has not been shown that we can hasten or avoid our death by maintaining a certain attitude.

It certainy is understandable that the majority of those with cancer appropriately experience shock, anger, frustration, uncertainty, a feeling of unfairness and irritability at various times. Studies show that being able to express these feelings and having a support system that allows this can reduce the likelihood of anxiety and depression and boost quality of life. It is important that a person with cancer not feel obligated to act more positive or happier than she actually feels.

In LaTour's support group, they agreed that when you receive a diagnosis of cancer, all the feelings that are normal - grief, fear, regret, anger - even if you express them, do not go away. Rather, they are like a cloud hovering overhead. If the cloud is hidden behind, it is easy for us to be positive, but that takes a lot of energy to do, and you run the risk of the rain pouring down on you when you relax your guard. Better to keep the cloud in front where it is visible, and make a conscious choice about how and when to express the feelings it contains so as to have a measure of control.

What this means to me is that some days, I choose to tell people I am having a rough time, or not feeling great, or frustrated with my symptoms - whatever. And some days I can honestly say I am feeling good and optimistic. Whichever kind of a day it is, I will be honest with my loved ones because honesty is important to relationships. It does not mean I am not thinking positively.

Mike is onto something in that a positive attitude plays an important role in quality of life for me, whether or not it prolongs life. To me, a positive attitude does not mean denying reality; nor does it mean that one must believe wholeheartedly that one will survive against all odds. I believe it does require recognizing what is within our control and embracing that, while learning to be comfortable with the fact of death. It is hard - accepting and preparing for the reality that I must leave this world someday, while still fighting to stay alive with whatever means are within my grasp. I may run out of tactics one day, but I will still have choices, and I choose to focus on that as much as I can.
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Advocacy for ovarian cancer tends to focus very much on the need for identification of prevention and early detection measures. But it also takes the form of activism to increase funding for more effective means of treatment, and earlier access to newer modalities.

In the 16 months since my diagnosis, I have monitored the clinical trials for ovarian cancer closely, knowing thaI will have to try many different approaches if I am like the typical OC patient. The variety of approaches being offered has increased significantly during this time period. I have discussed just two of them here on my blog. OC is now considered a "chronic" disease in the sense that women can often have some semblance of quality of life while continuing to go through periodic cycles of treatment.

While a cure may not be considered a reasonable goal for us based on the numbers, remission - or at least minimally intrusive therapy - certainly is more reasonable. Ovarian cancer cells seem to be especially smart when it comes to developing resistance to the standard chemotherapy drugs, so it stands to reason that women benefit from having more options available as they work their way down the list.

Here's the rub - only a small percentage of women with ovarian cancer are in clinical trials where newer therapies may be available. Studies show that only 3% of adults choose trial participation. Even though the government provides listings of trials and guidance on how to interpret the information, it can be overwhelming for people without a medical background. The prospect of being a "guinea pig" prevents many from even considering the possibility.

Oncologists could help with this, but. in reality, most do not - they do not have a source of reimbursement for their time that would be spent searching for clinical trials for each patient and then explaining the options and helping the patient decide.

There are now programs that can help patients wade through the morass of data and medical jargon, and match people with clinical trials for which they are qualified. The best place to begin is at The Wellness Community. This website explains the phases of clinical trials, has links to listing of clinical trials, and allows one to complete the application to obtain personalized clinical trial options. For those who prefer phone contact, the program can be reached at 1-800-814-8927.

I completed the application several months ago and received 65 clinical trials around the country for which I qualified. "Caroline", the resource person who did the search for me, offered to refine the search further so that it would eliminate all Phase 1 trials, for instance. My friend Barbara called the 800 number instead of completing the online application. She received 60 trials for whihc she matched. We did not limit our searches to any specific part of the country, but you can restrict it to just trials within a certain distance from your home, if desired. When the trials are sent to you, they are arranged according to location.

That still leaves the problem of how to decide whether a trial is right for you. That is where oncologists are more likely to be able to help in explaining how the options compare and explaining the risk versus benefit considerations. Before taking clinical trials of interest to your oncologist, it is a good idea to call the number given for the study coordinator, who will be able to confirm whether you actually quaify for the trial. It is almost always an option to go to the site where the study is being conducted and have a consultation with the study physician if you would like a second opinion.

In deciding whether to pursue a clinical trial, I will mention the observations of two gyn/oncologists who deal with ovarian cancer all the time. 1) We walk a delicate tightrope between staying alive and having a quality of life that makes it worthwhile staying alive ( each of us may define that differently). 2) No matter how aggresive the approach in studies of OC treatment, even the most heroic efforts using multiple drugs, bone marrow transplantation and other physically demanding treatments have not shown a good track record in curing OC. The current bulk of evidence favors using one drug approach at a time, and if that begins to lose effectiveness, switching to another approach.

Some women may decide to go the heroic rescue route with a high-risk treatment protocol. I would not fault that; we each have to decide how to walk the tightrope for ourselves, knowing that none of us can see where the rope leads or ends. The trick is to focus on the balancing, rising to the challenge and appreciating the opportunity to stay on the rope!
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