Prematurely aging skin

For so many years I have been vain about my hair and skin.  No matter if I was overweight or slim, these were two constants, good hair (thick, lion hair) and my skin (smooth, no major wrinkles as I am aging).  Cancer has definitely affected both.  Now that I no longer color my hair, it is just wild and dry looking.  Thanks to Doxil, and its substantial side effects on skin and mucus membranes, my skin is even worse, so delicate like someone living in a nursing home and watching for bedsores.  One night recently I accidently slept on a wrinkle in my soft flannel sheets and woke up bruised and scraped.  With Avastin and how it affects healing, my hip is still healing, scabs still there.   My feet are peeling, hands dried and wrinkled, as if I was 80 rather than 54.  My face still looks good, but that is probably thanks to good makeup and skin care and staying out of the sun.  Everything is just dry and tired like the rest of me inside and out.  Still waiting for the chocolate cake cure.

Cancer discounts

Sometimes, maybe even often, I think that anyone with cancer, particularly the fatal kinds like pancreatic and ovarian, along with other diseases like ALS for which there are no cure, should be given discounts (for cel phone, utilities, food, clothes), front of the line in the supermarket, never have to wait on the telephone for assistance from anyone for anything, rather like having a full-time assistant or concierge, someone to just cut through all the nonsense and make my difficult life easier.

Runny nose avastin style

Somedays I feel like my grandmother with a tissue or handkerchief up her sleeve in her sweater sets as I walk around always with a tissue in my hand, pocket, sleeve for the perpetually runny nose everyone gets from Avastin.  It dries up the abdominal fluids created by ovarian cancer but seems to create fluids everywhere else.  Peeing constantly, congested, blowing my nose constantly, bloody noses, headaches from the congestion.  Ah the joys of cancer and chemotherapy.  Still better than the alternative but can't someone come up with a better solution?  Seriously??? A real one that is a cure rather than a delay?  Haven't we been fighting the "war" on cancer since the 60s?  Not to say that progress hasn't been made but definitely not enough in this epidemic.

doing the shuffle

No, it is not a dance but what my life has become in its limited way.  I shuffle from the bed to the bathroom to take a shower back to the bed to the kitchen back to the bed to the laundry room (thankfully next to the kitchen) and back to the bed.  Over and over, round and round.  From a woman who used to spent 8 or 10 hours a day in courtrooms all over the state it is a pathetic statement of what survival means.

A flashing life

That old saying about when you are on the verge of death your life flashes before your eyes.  Although I am not yet there, but in the process of dying (unless science changes in the next several years), it will be a long slow process.  On Thanksgiving I took out my charm bracelet to wear for the day, to remind me of the life I've lived, good and bad, and think about it all.  The bracelet came from one grandmother and several of the charms from the other.  The dog to show my love of animals.  The schoolhouse representing my love of learning and reading.  The figure skates for all the years I spent as a rink rat.  The piano for the years I spent playing and my love of music.  There is nothing for gymnastics but it was a shorter period of my life, but no less important.  My scales of justice representing my love of law and the practice of it.  The best highs of my life will always be times spent in courtroom battle, the experiences needed so I could get to the win.  My baby boy charm representing my son's birth and the demise of my first marriage, the difficulty in even convincing my ex-husband to purchase the charm for me on mother's day after my son's birth.  A sad time in my life.  A vintage puffy heart from my second husband representing true love, my soul mate, someone who brought joy and laughter back into my life at a time I thought it wasn't possible and perhaps would never find it again.  The Eiffel Tower representing our love of travel and everything French.  Although I dislike flying, it is a necessary evil of modern society to achieve my goal of getting to Europe and other places.  How I wish I was healthy enough to return to China, to see Hong Kong harbor at night again, to see Shanghai, Beijing and more. Now I just focus on making the most of time I have left and traveling when I have the energy to do it.

A lighter driving foot

Having cancer doesn't necessarily make one loose weight, especially with steroids in the mix, but it does change other aspects of who we are.  Since I was age 17 and driving, I always had the family heredity lead-foot meaning I like to drive fast.  Always preferred driving sports cars, especially manual transmission and will always treasure my memories of driving cross-country in my 3.2 litre six cylinder car with the stick, Ford Probe, with the liquid crystal display dash.  Still love cars, but now don't drive much anymore, especially on a chemo week.  It requires too much energy and focus.  But I do notice that when I do drive it is much slower, and much less aggressively.  The lead-foot has disappeared with the BRCA gene showing up.  Oh well.

Can't they find a cure that involves chocolate?

For several days this week I was craving chocolate layer cake.  Of course that craving got satisfied.  But got me to thinking that when the researchers do find a cure some year, it absolutely must include large quantities of chocolate, especially chocolate cake. Luxurious, smooth chocolate cake with chocolate icing.  It doesn't need to have flowers on it or anything special, just nice dark chocolate.  

killing me slower

Keep thinking about the Roberta Flack song "killing me softly" .  Can't say that cancer is killing me softly in any way, but it will kill me eventually.  On the current drugs, it is just killing me slower, like the doctor said this week, instead of cruising down the highway at 80, it is now going 5mph in my driveway.  Depressing but true.

the sisterhood of the traveling scarf spreads across the world

Having started spreading happy and color through my scarves here in NJ, the sisterhood is continuing to spread across the world. As my son says, I have friends all over the world. Sometimes I don't realize it, but it is true. So scarves will be going through NJ, to NY, are already in Arizona and California with more to go there. To Texas and Florida. To France, to Finland, to Hong Kong, it is really quite subversive, to know that scarves are being worn all over the world that I have made, due to cancer, but still spreading positive energy, spreading happy and color, spreading good works wherever those scarves and women go. D. asked me how many scarves I had made. I was thinking about 30, but now, after counting the number is closer to 50 and keeps growing. An umbrella of color and scarves across the world.

the wildness of hair

I spent so many years trying to tame my hair, style to look professional, blow it, iron it, clip it, tie it, always a battle but still knowing that I was lucky to have thick beautiful hair, lion hair as my husband called it. Like every woman who is told they have cancer I cried about my hair, cried when I cut it off, mourned it, bought a wig and expected it to fall out. As we know now, mine thinned but never fell out completely, waiting for me like a tease, teasing me about what it was and what it would be again if I lived long enough. Now, it keeps growing and keeps trying to fill in and it is wilder then ever, not really curly in the way it used to be when I was younger the beautiful soft healthy curls, but it is grey and wild, in a way that seems it can't be tamed, when I try to straighten it, it refuses to cooperate as if to say I've had enough, give it up and let me be, let me be free as I have suffered to through your illness. Forget taming me, like you can forget taming cancer, it can't be done. So I let it be wild and free, with a little hair spray and it is what it is, like me.

Still living by the numbers

numbers - was always not very good at math thanks to a form of dyslexia which caused me to reverse numbers and wasn't diagnosed until I was 30. Once I realized the problem I found ways to work around it and wasn't so afraid of math and numbers anymore but know I can't think numbers when I am tired or distracted, but love numbers to break things down, to really present things in a way that matters. So here are today's numbers: 29 - my CA 125 - at 29 back in normal range again after five treatments, pretty amazing. 24 - how many chemotherapy treatments I have had during the last 18 months 58 - how many times they have stuck me (through the power port) for blood, chemo, ct scans and so on. Thank goodness for the port so I don't look like a junkie with track marks in my arms and collapsed veins. 3 - haircuts since diagnosis. 1 to cut my hair off thinking it would fall out and 2 to shape it while it grows back 0 - times I have colored my hair since this odyssey began 31 - that is the median number of months for overall survival of stage 3c ovarian cancer. at 18 months I am well past half way, but not really believing that I could be dead in 12 or 13 months. that doesn't seem real to me since I look good (as everyone tells me) and I feel reasonably well in spite of exhaustion etc. 20 the number of years I practiced law until diagnosis but that is finished now, over and done. maintaining my licenses but definitely too sick to work.
50 the number of scarves i have made since diagnosis.
3 the number of blankets I have made since diagnosis.
4 the number of needlepoint pillows I have made since diagnosis.
will have to come up with some new numbers soon as these evolve and change.

Hoping to stay alive long enough for miss pac-man to save me?

Seeing this story on CNN a few weeks ago created a mental image for me I can't get rid of - waiting for nano-particles to be created to deliver the anti-cancer treatment directly to the bad cancer cells leaving my healthy cells healthy. Brings me to thinking about a little miss pac-man type cell eating up all the cancer cells, chomping through my body, finding all the cancer cells and leaving me healthy again. I so want to be healthy again, tired of being sick, of all the side effects of medication, limitations on my life. My desire for a steaming hot cup of starbucks de-cafe cappuccino with steamed low-fat milk is overwhelming, something I can dream about, and get jealous about when I see others drinking hot liquids, so hoping the research that is ongoing since 1974 becomes prime-time soon before my body is damaged beyond repair.

Happy depressed

My husband often asks me how I am. Can I be happy and depressed all at the same time? When I was young I definitely knew depressed, as I was depressed and angry, having grown up in a dark angry unhappy household. Took me a long time to find a smile and laughter. Lightness and air to breathe. After my father died I started to write a dark angry hostile novel about it, but found it was taking me back into that dark depressing world. So I hit the delete button and vowed to write only happy things that make people smile. So, sometimes I feel yes I can be, happy to be alive and seeing my son spread his wings and fly, to do what I raised him to do, and be the best him he can be. I am happy to wake up in the morning and be alive. I am happy that I have a wonderful loyal loving husband who is my soul mate. I am depressed that I wake up to cancer, to not working, to the daily grind of being a professional patient, and knowing that I will likely leave my son and husband behind sooner than I planned. So there it is, happy depressed.

Regrets

Regrets, I've had a few. But in the end I did it my way. Keep thinking about that song and knowing that I don't have many regrets. I have lived a good life. Been an above average parent. I am not perfect. I should have cut ties with my family years before I did, but I kept it going until my father died. I suppose I kept thinking it would all work out and if I improved as a person, I could improve the entire situation, but it was one that only spiraled downward and could not be fixed, or at least not by me. So in the end I did it my way.

Professional patienthood

Having now been through 23 chemo treatments, five of doxil/avastin, it is exhausting to manage symptoms and side effects and try not to have them. Although I thought I would done with the next treatment, I've now been informed that the treatment is working so well that we're going to continue indefinitely, until it stops working. So we will continue icing my hands and feet, feeling hostile everytime I see someone drinking hot coffee because I am not unless I want to suffer from mouth sores, and wearing clothes or shoes that I no longer wear because they are not comfortable, too tight, too irritating, and feeling constantly tired. Having a limited half-life and sometimes even less. Days trapped in the house because I don't feel well enough to go out. Finding shopping overwhelming, especially certain big-box type stores. Having to walk out of walmart one night knowing I couldn't walk through the store. Glad to be alive and still waiting for science to catch up to me.

Spread happy - Sisterhood of the traveling scarf

As I contemplate another birthday, feeling lucky to get there, but knowing the next one may not be as good, I continue to knit my way through cancer and chemo, giving ruffle scarves to friends who I ask to wear the scarves and think positive thoughts for everyone and to spread happy and do good works as they go through their day. I want no negativity in my life, only happy positive energy, only good kind people, no evil.

life as empty nester with cancer

Now that empty nester status is official, I can say that there is an emptiness that goes along with it. Although my son has been away for summers in the past, somehow this is definitely different. His room is emptier, knowing that he won't be back in only a few weeks, knowing that he is at a different stage of life, makes this entirely new. Got confused at the supermarket the other day looking at food and knowing I was not buying it for him and having a much lighter load, probably by half. Knowing that our electric and gas bills will be reduced by at least a third. But also knowing that I only have so much time left but not knowing how much. Hoping I will live long enough to see him graduate from college but not knowing if I will. Have had some good news this week, finding out my CA 125 is down to 71 from a high of 420 before I started the current chemo, which I needed to hear after a bad migraine with nausea and vomiting only a few days earlier. So I continue on one day at a time, letting my son fly and enjoy his life, and trying to fill in the time. Food becoming way too important. Maybe I will be baking once a week, keep knitting (made several scarves, two shawls, several needlepoint pillows, blankets) but I have to find things to keep filling in for my time and whatever energy I have.

Shawl as life metaphor?

Recently I have been trying to again learn to knit but with fewer rules, refusing to follow patterns, not listening to the needlepoint and knitting police, and just going my own way while I build some skills. So, I took my skills, old and new and make a beautiful shawl, using yarn that I had received after my great-aunt died and knitting needles I received from her and my grandmother and only recently rediscovering. I have been crocheting since age 12 or 13 as a way to get out of sewing class in junior high, getting my grandmother to teach me, and needlepointing since age 13 when a friend of my mother's had a needlepoint business and gave me a pillow to make as a gift and would steer business to me to finish projects of other women who didn't have the patience for it. I made some good money in those days, especially as a teenager, finishing other people's work. Yes, I'd had tried to learn to knit before but it never really clicked, maybe the timing wasn't right, maybe I just wasn't focused, maybe I just wasn't ready. So, instead, now I am learning, and feel that it is sticking, that the time is right to begin this part of my journey, and returning to lessons learned in the past and applying them to now and the future. And, while I was creating this shawl from the remnants of yarn left from probably about 20 years ago, using old and new skills, old skills from my family and new skills from friends, sometimes making mistakes, and lacking in perfection, but learning as I go, isn't that really all about life? We take skills and lessons learned, and add our personalities and creativity, make mistakes along the way, discarding what we don't like and can't use, and still end up with something beautiful and warm and that can be passed along and shared with others after we are gone. It will be something to wrap ourselves in and remember all that came before it to get to a point where it could be made, even with its mistakes, and what will come in the future from the lessons learned while making it and wearing it. Most importantly, it will be a special gift for a special friend after I am gone to pass along this history and these lessons.

One year later - with hair

A little over a year ago, I cut my hair from a few inches past my shoulders to short and spiky. It is hard to remember what I look like with what my husband called my thick "lionhair" in auburn, versus my salt and pepper mess that is still growing out, knowing it will take at least another year to get it back to some semblance of normal, thicker, longer, healthier, rather than chopped up, not as thick as it used to be, not as healthy as it used to be thanks to all the chemicals free floating in my body. It was a miracle that I had any hair left after 18 chemo treatments, but it is absolutely an indicator of my overall health and I hope I live long enough to feel my hair has returned with my life.

Life meaning death

Until becoming ill, I have always been a voracious reader, one or two books per week was normal for years, reading all the biographies in the school library in sixth grade, coming home from the town library with armloads of books, and being grateful for my Sony Reader where I have stored more than 300 books as my shelves are full, even with all the books given away over the years or resold (hundreds). But since becoming ill, reading is very difficult, as it is hard to focus, thanks to chemo-brain and the attendant fog, as if my brain was stewing in chemicals. Thus, I have read any two books on the last year, but am trying hard to get back on track, reading four books more recently and pushing to read another 4 in the last few weeks. One a week perhaps. I read fiction and non-fiction, history books always fascinating be they American or European history. I always can imagine life during those times and at times have wished I could have lived in certain eras but am always brought back to reality by being grateful that today people bath, that antibiotics exist, and most importantly for me now, that treatments exist for ovarian cancer. It may only extend my life a year or two, but that is more that people used to have only a few years ago. Perhaps in the future, it will all be different and life will beget more life. Now it only seems to mean death, particularly in the past and possibly in the present.

Another loss to this horrible disease

Pierce Brosnan's daughter from his first marriage died today from ovarian cancer at age 41 after only 3 years. Her mother died at 39. Her grandmother too died from the disease. Is there a brca gene there? Why didn't she have her ovaries removed after she had her children, given the history? Was she like me, thinking she could be monitored and they could catch it? http://omg.yahoo.com/blogs/celeb-news/pierce-brosnan-daughter-dies-ovarian-cancer-125318041.html

Wheelchair invisible

Years ago my husband and I were discussing odd situations we've experienced like seeing folks laughing or smiling (in an comfortable way) when they observe someone being sick meaning vomiting. Why is that? My answer has always been we're all relieved its not us because we know how horrible a feeling that is, when you are that nauseous. Perhaps it is the same issue when people see someone in a wheelchair, are they that uncomfortable? Are they just relieved it isn't them? I am not sure on this one, but definitely noticed it when I was being wheeled through the airport last week. It wasn't that I was too sick to travel, just too sick to walk long distances and stand in long TSA lines. Did not have it in me. But as I was being wheeled down the concourse I definitely noticed people trying not to notice me. They wouldn't move as we approached as if we were invisible, me and the wheelchair, my son and his bag, and the person pushing me. Surprising really, for me as I am always so aware and try to be courteous to everyone, especially someone with disabilities. But it was a noticeable difference as people just stood still and seemed not to want to move, would look past me and over me, refusing to look at my face and look down at me. Is it a reverse road rage? Knowing that they can't say anything to someone in a weaker capacity but really wanting to? Instead, I was just wheelchair invisible, not a real person, but a lesser one, a weaker one who did not deserve recognition or acceptance. Sad.

Breaking the rules

As I learn how to knit, continue to crochet and needlepoint, hooking rugs, it has me thinking about breaking the rules and perfectionism. All these years I have been doing handicraft type work I am always trying to follow every pattern to perfection, every color correct, every stitch, pulling out mistakes and making corrections sometimes to frustration. But with cancer, my attitude has changed. I am more creative, doing what I want, making what I want, if a mistake is made does it really matter? does it add to the piece? Does it make it more human? Who is going to know - the needlepoint police? So to hell with it, I am unhooking my linear brain as much as possible and going with the creative flow and seeing what comes out.

Passport renewal

Now that passports are renewed every ten years, it made me think while traveling this week. My passport will renew again in 2020, seven more years. Without a passport it feels as though I am not a real person as I know I cannot travel outside the US, go the places I want to go and experience the world. But in looking at my passport it is further evidence of my mortality with cancer and the possibility that this may be my last passport since I amy not live long enough to renew it again, or be too sick to travel. I need to make it ten more months to see my son finish his first year of college. Beyond that I cannot plan or think until I see what condition I am in at that point. But 2020? Doubtful unless the sciences changes significantly in the next few years.

Migraines evolving

Unfortunately, I have suffered from migraines since I was about 6 years old. Hitting puberty made them worse, but more regular and predictable. Pregnancy seemed to stop them, and continued while I was breast feeding. Menopause seemed to have lessened them substantially and turn them more into regular headaches. Unfortunately, chemo seems to have kicked them back in with a vengeance, worse, waking me up in the middle of the night with pounding head feeling powerless to move and forcing me now to result to medication I had been prescribed before but always rejected because it would make me too tired and unable to drive or work. Before, sleeping would always alleviate it, but now it doesn't. Nausea but worse. Instead of one every thirty days, now have had two in three days. What fun.

I'm tired - so sang Madeline Kahn

I was thinking of this song yesterday, Madeline Kahn in Blazing Saddles, one of the great comedies of Mel Brooks and one which never would get made today. She was hilarious and so talented and died too young at 58, of course from Ovarian Cancer after only one year from diagnosis. I was feeling so tired and I'm sure she felt tired at the end, as do I, a week after chemo, I am just exhausted, pushing myself to eat something but having difficulty finding something worth eating. I suppose I would feel grateful to make it to age 58, but it is a long road to get there, another five years, and I just don't know if it is feasible, much less if I have the strength to get that far, one day at a time. So, I'm just tired.

Surviving more than 1 year

June 8 was my diagnosis anniversary, June 11 my surgery anniversary. Kept thinking about blogging about it, but could not settle my mind enough to do it, especially after attending my son's college orientation weekend. It was wonderful, but exhausting, and I felt lucky to be there with him and my husband. It sas taken me some time to think it through, all of the changes a year can bring, from trial lawyer to professional patient; from working mom to sick mom, from taking care of my husband to him taking care of me. To not caring about what car I drive since I rarely drive anymore. From someone cooking 4-5 nights per week or maybe 4-5 nights per month. Someone with energy to someone without energy and verve. Now, finally, learning to knit, something I have tried before but couldn't get, yet this time it seems to be clicking. How weird is that, the clicking of the needles and the clicking in my mind. This was never where I planned to end up but here I am, just trying to make it through each day and maybe get another year.

Onto the second line treatment - a professional patient.

Two down, four more to go, Avastin and Doxil. CA125 actually went down a little to 390 which we didn't expect at all. We were expecting it to go up for a few treatments before it declined. So maybe this is good. I keep thinking how much work it is to have cancer or other chronic diseases, to keep up on medications, manage symptoms and side effects, and try to stay alive and reasonably healthy in the meantime. Second line treatment - when the first line doesn't work, or doesn't work long enough, well enough. Some websites call it "salvage treatment" - does it mean we're garbage because the first line didn't work? Does it mean this is just to save us, maybe get some extra time but it really isn't going to work? That is a term that needs to be exorcized from the cancer lexicon. So, I'll keep icing my hands and feet, avoiding hot liquids and foods, and see where we end up in NOvember and December.

Statistics lessons

In considering ovarian cancer, I keep trying to understand the numbers. I try to understand the cancer numbers overall too. For example in 2013, the projections are for 1,660,290 new cases of cancer, that's 1600 per day!! Ovarian cancer is about 22,000 per year, or about 60 per day, with more than 14,000 dying each year or about 39 per day. Ovarian cancer is only 3% of all cancers but 5% of all cancer deaths. Yet, no one discusses it, a truly silent killer.

Loss of identity

For many years, thought of myself as lawyer, mother, wife, recovering alcoholic, depending on the moment and what was going on in my world, what would be at the top of the list would be constantly shifting and rotating. Now, always at the top is cancer. With cancer, everything else if fairly irrelevant. If I am dead from cancer nothing else is possible. If I can't get proper treatment and care, nothing else is possible. I feel as though all I am is reduced to a patient, dealing with clinical settings and issues. My life has become narrowly focused, not the broad-based person I've always been, with many interests and activities. Too tired, too worn down. Although the avastin and doxil seem to have had positive effect, dropping 9 pounds of fluid since my treatment on wens. Not terrible side effects like the last chemo, icing my hands and feet like suggested, watching what I eat/drink, but fatigue is always there. Overall, just getting through the day is important. Planning my son's future is next. Maybe a trip here and there when I feel up to it. Cancer kills people, lives, dreams, and it is an epidemic that is running through our country unchecked and unabated.

Poor coverage of BRCA issues by media

Been somewhat following the whole Angelina Jolie coverage and finding it quite deficient. As usual, breast cancer gets the cache' and ovarian cancer is given short shrift. Poor explanations all the way around about detection of ovarian. No one explaining that it ends up more deadly because there is no test, and it is found at stage 3 or 4 and so difficult to treat then. Poor job of suggesting to people with cancer in family to get genetic counseling before getting testing to discuss what they do with the information when they get it, what it all means. Also, poor job of explaining, really no one explained that a father can be a carrier, like in my situation. That for men, it means high rates of melanoma or prostate cancer, testicular cancer etc. Overall, major media fail.

rough few days - second line chemo

Yesterday was supposed to start new chemo avastin and doxil but no such luck. Woke up with wicked migraine and some nausea. Pills not working. food not working. sat with another cancer patient for a while before I was supposed to start my treatment but didn't make it. got clammy, more nausea, could feel change in my blood pressure. usually in those times it drops, this time it was climbing and with high blood pressure can't be on avastin as it can cause high blood pressure. Instead, I ended up lying down on bench in hospital hallway, vomiting. a total nightmare. nurses as always were great. ended up in ER, getting ct scan of my head to make sure cancer had not metastisized to my brain, getting medication for the nausea and migraine via iv, and going to sleep until 5 p.m. coming home, sleeping more. today, did finally get the therapy. ironic how in my life even on my way out I am helping others and teaching. ended up connecting the chemo nurses at the hospital with the doxil cares program, regarding advice about icing while getting treatment, pre-treating and post-treating with ice etc. they said they wished all their patients were like me, but maybe not really. maybe just well-informed and educated, but certainly not ones relapsing like me. this was definitely different treatment. only about 15 minutes of pre-treatment with steroids. no benedryl or zofran. they aren't worried about nausea with this drug and many other side effects of carbo and taxol. just other skin type issues. we will keep icing and no hot liquids and see how this goes. will miss my soups.

a little new research - very little nanoparticles

Sounds like an interesting process. hope it is perfected soon by Mayo Clinic http://www.sciencedaily.com/releases/2013/05/130521105059.htm

The Alien inside

Everyone who has seen the movie "alien" can always remember the scene where the monster baby bursts out of the man's abdomen and chest, shrieking. That is rather what cancer feels like to me. An alien inside, growing, taking over my body, and something I cannot control. Instead, cancer is trying to return, tamoxifen not working, and back on a new form of treatment next week. Avastin and Doxil here we go. Lovely.

Germphobia magnified

When I was young, I was definitely not germphobic. Then I had kids, and voila, it began. working in a courthouse, trying not to get sick, trying for kids in daycare not to get sick, and more and more I became worried about germs and contagion. I worked hard not to get sick, especially when my father was ill, in and out of hospitals, rehabs, nursing homes, always decontaminating my hands but noticing the positive effects that I was not getting sick like so many others. Since cancer, it has gotten worse. I was so determined during chemo not to get sick and suffer any delays with treatment, I sometimes don't like being in public, hate flying and the exposure to sick people, making my son strip off school clothes and wash his hands as soon as he came home especially before he came near me, and so on. A few weeks ago we were at a program for accepted students at a major university. A parent in one of the seminars who was clearly ill, coughing and sneezing had the audacity to offer to distribute papers that were being passed around. I had to instruct my son not to take the papers so we would not get sick, and got the papers from a different stack and distribution. The sneezing woman likely heard me and gave me a major dirty look. My son and I discussed it later, as I wasn't so crazed about it before I got cancer. He told me he understands because I have a reason to feel the way I do, that I am more vulnerable. Wish people would just stay home when they are sick and not spread it!! I am not ashamed to be neurotic about germs!

Ruled by numbers

My life seems ruled by numbers. CA125. Hemoglobin. Weight. Blood pressure. Don't really let LDL HDL rule me anymore. That is the lease of my concerns given my circumstances. I have to maintain enough weight so when I don't feel like eating I can sustain my hemoglobin and other blood count numbers and not need transfusions or have delays in treatment. Blood pressure - don't need a stroke while in the middle of all this. So far so good on that one. It is all a balancing act while we wait once again, on Monday, to do more blood work and get the results on Tuesday. Is the tamoxifen working? That will be the big question.

Family dysfunction

I always describe my family as normal, meaning they are just as dysfunctional as everyone else's family. My son recently asked me how I would rate my family, including me and my husband on a scale of 1-10 (10 is the worst) for dysfunction, and I felt a 5 since we are pretty nuts, but I've seen worse. This week was not a good week for my family, they moved up the scale to about an 8. After receiving a call from my former husband informing me he wants to attend our son's graduation with his mother, even though he is barred by court order, and that he knew I was sick. I was furious as it was clear he was getting information from my family who I don't talk to, in part, because they talk to this idiot. My cousin who had inadvertently shared information with my mother, believing it would be confidential was furious with my mother. My mother naturally just blames everyone else i.e. my three sisters, for talking to my ex, saying she doesn't want to talk to him but he calls all the time. Yes, because he doesn't work and has nothing better to do with his life!! Who cares that we are divorced since 1998. Who cares that the court has barred him from contacting this kid since 2003. Who cares what the kid wants - no contact with his father. My mother and my family always think they know better, and never ask what someone wants or respects it, another reason to keep them far away from me. Oh and by the way, my mother has doctors, better doctors who are going to fix me. yeah right. Like that one's possible. Is it doctor who has the super secret formula to fix ovarian cancer? Think he or she would be making a mint on that one. It's absurd. The whole group of them are absurd and pathetic and deserve each other. My son, husband and I are so much better off without all of them. Much more peace and serenity. No drama!

Death be not . . . afraid?

Lately in talking to others about my circumstances, I find it fascinating how people respond to the concept of dying, or fail to respond. It is almost a knee-jerk reaction, when I say that I am sick, and dying, the question is how long, 2 years, 6 years, who knows. I get back immediately "don't say that" "you're not dying" "you look too healthy to die" "they're coming up with new stuff all the time, they'll save you," and so on. People seem so uncomfortable with death, with being okay with dying, and worse, to not fighting the good fight against cancer. They seem to expect me to say that I'll fight this, as if it is a fight that can be fought, and to suffer through it. The worst is from people who don't have cancer, and sometimes even from people who have it or have had it, but not those with ovarian cancer. We know the reality and live with it every day. At 53, no matter whether science improves tremendously the next two years, I will not make it to 80 years old. That is reality. I will be lucky to make it to 60. I hope that time is in reasonably good health so I can still travel. But I am in reality and ok with it. Life is life. Maybe I've learned all the lessons I need to learn and on my way out I need to teach a little more.

Breakthroughs for melanoma

Hope they reach this level soon for ovarian cancer, while I am alive and healthy enough to benefit: http://health.yahoo.net/experts/dayinhealth/medical-breakthroughs-beat-skin-cancer

Some interesting new science

Not sure what it means but has some promise for the future: http://www.sciencedaily.com/releases/2013/04/130430092509.htm

3 weeks on tamoxifen

The first three weeks on tamoxifen have not been fun. More fatigue. Some nausea. All manageable. A little bit of hair loss but not like on chemo. Have been viewing the blogs and some people have found it very helpful, kept them off chemo for quite a while, others not so much. I would be so happy if this buys me six months of no chemo.

Do the hateful people live longer? Is it just karma?

That's what my mother in law used to say - that the evil nasty people live the longest. Is that a good thing then, that I am ill and going to die before I should? Does it mean I am a good person? I've always helped others, and tried to do the right thing in life. So, I always think of myself that way. People tell me I'm inspirational. In reality, I'd rather be less inspirational and healthier, and live longer, no offense to those who are finding inspiration from my life. Yes, I still look healthy, but knowing that cancer will eat me alive eventually is not comforting. Does it mean that I've learned all the lessons I'm supposed to so I don't need to continue on? Who knows. Is it karma? What lessons is my life teacher others? Is that part of my karma? Maybe someday I'll understand it, but probably not and it is ok. I can still die in peace.

New science

Here are a few new studies that look very interesting for we ovarian cancer sufferers: Regarding Parp inhibitor research for people like me with platinum resistant cancer: http://www.sciencedaily.com/releases/2013/04/130403071435.htm Regarding a different class of drugs which is new - stage 1 study: http://www.sciencedaily.com/releases/2013/04/130407090643.htm Hope the science catches up to my disease soon enough to keep me alive a few more years.

Cancer redux

Went to the doctor last week expecting to be told my numbers were relatively stable. No such luck. My CA12 was way up, 258, the highest its been since before I had surgery and chemo. Not a good sign. Sent for emergency CT scan which was clear thus far, unremarkable. Which was good news. So, after discussing all options, I'm now on tamoxifin to see if we can slow the sucker down, give me more time off chemo until at least August when my son leaves for college. Not fun, very discouraging. I feel as though I've done everything right, taken all the meds, all the chemo and so on. Maybe I'm just too healthy, and cells are replicating so fast? Who knows. Possibly a clinical trial in my future, Parp inhibitors? Vaccine? Who knows.

A cancer vaccine? Wow!!!

This study sounds amazing and really gives me some hope. Some days I wake up and am so discouraged knowing that living five or ten years may be a high expectation in my life, and that to consider living as long as Roger Ebert did, until 70, nearly 12 years from diagnosis, seems impossible. But maybe not? http://www.bloomberg.com/news/2013-04-06/ovarian-cancer-vaccine-made-from-tumor-cells-yields-responses.html?cmpid=yhoo

more than 90 days and still so tired

Fatigue can't kill me but it sure makes me tired and impossible to work. Get up every day, and am able to do a few things, but go back to sleep at some point and for several hours. Wanting to start walking again, but cannot even think about it as I am afraid of it making me more tired, or getting stuck somewhere and not having the energy to get home. From reading the other cancer blogs and websites this is fairly common, as are the problems I have having with my hands, including the trigger thumb which I thought was repaired in 1997 and is now back with a vengeance, painful and making it difficult to grip things. Back to the doctor next week and we'll see what he suggests for all of it.

Statistical thinking

Considering statistics for ovarian cancer, and a 35% five-year survival rate - does it mean from diagnosis? From end of treatment? Assuming it means from diagnosis, then I'll probably die within the next four years? Even though I went to the correct experienced gyn/oncologist, who was an experienced debulking surgeon, and got the best chemo treatment available. So, here I am in a wait and see mode, but am quite bored with my life, itching to travel and constrained by school schedules and finances. Trying not to do much or plan much, living one day at a time, to find out when the other shoe drops and they tell me it has returned. In AA they tell you make no major changes in the first year. For ovarian cancer, the major changes have already occurred. The problem now is planning for all eventualities, and figuring out how to live knowing I have absolutely no control over what happens, that I am subject to whatever new treatments exist when it returns. Do I get through December? If so, I can go back on the same treatment I already had. If not, I'm sure what they will give me will be much worse and more difficult to tolerate. With metformin, do I have a 70% chance of living five years? Will I live to see my son graduate from college in four years? Maybe. Unlikely to see graduate school completion. So, I try to spend additional time with him, teach him life lessons that I thought we would do much later, financial management too. Wishing I had the crystal ball when someone could tell me I had 2.4 years or 3.7 years until it comes back so I could go live life without worry until then.

The person I used to be

Over the weekend, D. was reviewing photos of the last few years, including numerous photos of me, looking robust and healthy, with my long auburn hair. That used to be me but I don't really recognize her anymore. My life is different, I am different. How I view the world is different, reflected in my salt and pepper hair.

Canadian study about long-term survival

Not sure what it all means, except maybe I can live 3.5 years without a relapse because I am BRCA positive? It still suggests only 35% long-term survival meaning 12 years. It is hard to plan whatever is left of my life without a concept of how long it will be, except to make the most of every day: http://www.sciencedaily.com/releases/2013/02/130214103616.htm

Getting to the right doctor is critical

Rather than end up critical, a study demonstrates that it is a life or death matter for women to get to an experienced gyn/oncologist for debulking surgery for ovarian cancer. Thank goodness I got just that care, and continued care from experienced professionals. Here is the link to the article. http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?hpw&_r=1&pagewanted=all&

Cancer is bad for my health but good for writing - books published

As I wrote to my cousin today, cancer is bad for my health but has been good for my writing, adding this blog to my work, in addition to J'adore France, my travel blog. Plus, I have now published my first two books on Amazon, which had been sitting for several years, "The Mommy Handbook" a humorous look at parenting and corporate handbooks, as well as poetry I've been writing since college, "Early and Late". with more to come.

Back pain recap

Almost 20 years ago I was injured in a car accident when I lived in LA, ending up with neck and back problems, nerve damage in my left arm and other orthopedic issues. So, when I began to experience back pain and leg pain in May, I discounted it as I am so used to living with chronic pain, assuming it was more of the same. it never occurred to me that it was cancer. Of course once I had surgery and was on pain meds my back and arm no longer hurt, or if it did, my brain was more focused on surgical pain. Then, having the port inserted, going through chemo, on steroids, my back was the least of my problems and I did not focus on it. Perhaps the steroids also lessened the inflammation and irritation so less pain? Now, 70 days with no chemo and about 65 days with no steroids, my back, neck, arm, all are aching again, especially my lower back as I sit or lie down and get stiff, like I used to. Can't decide if it is good or bad, or have the old familiar back, or worried that if cancer returns I will not recognize it again.

Color shock

Shopping at the mall the other day for makeup and looking at clothes and realizing that I am beyond color transition fully into color shock. When I was young, like everyone else, it is a learning process to determine what colors work the best for us. For me, much revolved around my hair, going from lighter brown, to darker brown as a teenager, then to auburn when I started greying in my mid-twenties, and all these years of color. What did I wear? Black, earth tones, browns, some blues, occasionally pinks, but never purples, rarely reds, never yellow or orange. In makeup, kind of boring browns, maybe with a little green eyeshadow mixed in for fun. Last summer having ash blond hair after I cut it short was bizarre but I just dealt with the clothes and makeup I had, changing only my eyebrow pencil. Now, with my hair gone to salt and pepper and reluctant to put more chemicals in my body via haircolor, it is rather different to shop, finding myself trending toward purples and brighter blues, and different makeup trends, more pinks and lavenders. It is totally messing with my mimd, after 40 years of the same colors, chance is a big difficult, requiring more thought and effort. I was nice and comfy in my color cave. Instead, my mind is spinning and confused, in color shock.

What is flux? 60 days out

After more than 60 days from chemo, I am still having problems with my hands and feet although not as severe as a few weeks ago. Definitely have more mental clarity, but still fatigue and not sleeping well all at the same time. If I exert myself one day, I may pay for it the next two days with fatigue. Keep moving a few things off my to-do list here and there, and hair is returning, eyebrows, eyelashes etc. But D. and I were discussing the fatigue this morning and he told me it as just because I am in flux - but what is flux? Is it positive or negative? We all hear that phrase but what does it really mean? It isn't flex, like flexible, flex-time. It isn't flax as in the material or linen. But what is flux exactly so I can know when I'm in it or not? Apparently flux is a flow like the flowing of the tides, but it can also be a rate of flow in laws of physics. A little too scientific for me. Tidal flow sounds better and is more me right now, some days I have energy and can focus, not how it used to be but better than it has been. Still not high tide, and not low tide either. So, being in flux is not a terrible thing and at least now I know what it is.

metformin - a go.

Well, the results are in. As expected I got the good hair genes and the bad brca genes from my father, along with the diabetic gene. Pre-diabetic I am, and now can take metformin as I wanted. Who knows, maybe it will prolong my life. Five year survival rate. Does it mean from diagnosis? From finishing treatment? We're never really sure. If it is from diagnosis, then my chances of surviving more than another four years are maybe 40%? Not seeing my son graduate from college is incredibly sad to contemplate. Just trying to stay live one day at a time.

To do or not to do Haircolor

To be or not to be red or blonde or ash blonde? No it's not Hamlet, but a major decision for we vain women, especially post-cancer. So here I am with my hair growing out post-chemo, getting thicker daily, the first time I've seen its natural color in about 20 years since I did start greying very early. Can't really reconcile putting more chemicals in my hair right now after working so hard to get through and detox from chemo and I am liking the grey. Just need about six more months of growth and a good haircut?

Very good research website

Seems to have new top articles every day. For those of us in the cancer world, it appears there is so much science going on, the future could change dramatically in the next several years. http://www.sciencedaily.com/news/health_medicine/cancer/

Different health priorities

Contemplating tomorrow's glucose tolerance test (three hours of drinking horrid sugary stuff) I've been thinking through all the health issues that just don't matter anymore. Do I really care about osteoporosis? This was always a huge concern of mine with aging, but don't really care anymore. Cannot imagine that this is a priority, or that I will stay live old enough for this to be a huge problem for me. Do I really care about cholesterol and triglycerides? Can't say that I do. Dying suddenly from a heart attack would be better and less painful then dying a long slow cancer death. I am still eating healthy and the way I've eaten for years, but because it helps me feel better now, not because of a fear for the future.

New breast cancer drugs on the way?

This sounds interesting for women with advanced stage breast cancer, extending life by six months with fewer side effects: http://www.nj.com/business/index.ssf/2013/01/roche_touts_new_breast_cancer.html

New study re: BRCA and early menopause - so me.

This was so true for me, should have been another sign that I was BRCA positive but who knew?? I went through early menopause in my mid-40s, probably by 47 it was over as far as menstruating went, but still had flashes, weight gain, night sweats, and I have the sweats and difficulty regulating temperature even now with no ovaries but more related to chemo detox. Looking forward to 90 days to see how I truly feel. http://news.yahoo.com/cancer-gene-mutation-linked-earlier-menopause-205024862.html

40 days out

Now 40 days post-chemo, feeling tired, not as hungry, hair filling in, a few more pistons firing in my brain, feet and hands still tingling. Sometimes I feel like someone is stabbing me in a particular spot in my feet, legs, hands or arms, but I know it is all related to taxol and detoxing from it. I look at my 90 day to-do list and know I can't get everything done but one or two things every day are moving off my list, which is positive. Some days I have energy and a clear head, or hours, or minutes, and others - not. D. says my sense of humor is coming back and I'm funny again. My son has been accepted at two colleges with scholarship offers, although not his top choices at least he has a starting point. I am having the hair color debate as my hair is such a mixture of colors it is hard to tell what it is anymore or what it should be. Was supposed to color it next week but I am going to put it off a few more. Maybe a haircut in April?

Sensitivity

During chemo people would ask me if I was cold or hot all the time. I just felt I was temperature sensitive, meaning sensitive to extremes, which I still am. During chemo I was getting the face flush from one of the IV drugs, so I changed my face wash to a neutrogena sensitive skin cleanser which worked very well. What has changed is that now, almost 30 days from chemo, my skin is very sensitive and i cannot tolerate wearing wool or cashmere against my skin, even sweaters I was wearing a few weeks ago. Finding I must wear a cotton t-shirt under the wool cardigans I do wear and am not wearing of my beautiful sweaters or twin sets. Hoping it will change soon so before the winter is over I can wear all my clothes.

Fatigue - not fat

As I remain in mini-chipmunk territory with my face, I can confirm only gained about six pounds during treatment. Considering the steroids, this is pretty good, although I am trying to take it off now. I am still experiencing swollen hands and throbbing feet, but not nearly as extreme as during treatment. Fatigue is still present and some brain fog. I feel like I can remember a little more, but not great concentration and clarity yet. Started a book while we were away over the holidays but haven't been able to get back to it and finish, which is a little sad. I used to read like most people eat, drink or smoke. Fatigue is still difficult. Would like to sleep late every day, instead I find myself falling sleep at 8 p.m. and waking up at 5 a.m. but tired. Would like to go back to sleep but then I have to make sure my son gets up at 6 a.m. and out to the bus at 7:45 so I can't go back to sleep until 7. Ahh, looking forward to graduation and off to college for him in a few months. By then maybe I will have more energy. Feel it is a huge accomplishment to get more than one or two things crossed-off the to-do list every day.

In new territory - the next 90 days

Now two weeks from last chemotherapy - 18. Thinking about what to do so I made a list for what to accomplish during the 90 days from January 1 to April 1, 2013. It just has to be a better year than last year, which included almost dying, and spending most of the last six months in bed. It will be interesting to see now that I am no longer on steroids if I can lose the five or so pounds I gained during treatment, if my face will no longer have that round chipmunk look (my husband says it is already getting better), if my feet will stop hurting and feeling numb, what my hair will look like when it grows more, and if the brain fog will clear. 90 days - I've learned over time I can do almost anything for 90 days, diet, exercise, not drinking, and so on. This time it was 180 days and I made it this far. Let's see what I can get accomplished.