Ovarian Cancer Awareness Month comes to a close

Me and mom 1972

As September comes to a close, I hope that the conversation continues about Ovarian Cancer and the importance of finding an early detection practice and also keeping the word going about how important it is to be aware of your body and keeping track of any subtle changes or differences. Until there is a true detection vehicle out there for Ovarian Cancer, every woman has to be on top of her health.

The month of September has been a happy and bittersweet one for mom - she celebrated her 77th birthday, but also had to begin her 5th round of chemo. This last week was especially hard for her to bounce back from the treatments, and she is going to need more prayers for strength than ever. But I don't have any doubt that she will make it through this course.

Today mom had to have blood work done at Trinity so we also stopped at a local wig boutique on the way to check out the new styles and get options of colors since mom's hair grew back in more gray than before. She is excited about going to Samantha and Travis' wedding in another week, and is also looking forward to seeing her sister Ruth the same weekend as she will be in Ottawa at the same time.

Mom decided that she wanted to postpone next week's chemo treatment as she didn't want to be feeling nauseated and overall tired at the wedding. She will pick the treatments back up on Oct. 14 and 21.

There was a day in September that was dubbed "Mother/Daughter" day - not really sure of the date but I saw some photos floating around Facebook - so hence the photo in this post of me and mom circa 1972. For whatever reason (only 4 year olds know) I decided that I wanted to lean on mom and the photographer chose that moment to take the shot. The other photos from the sitting (of me mom and dad) turned out great but I think this one is my favorite. Each time I needed to lean on mom she was there. Sometimes mom had to straighten me up a little bit... but that's what a mom does - with a lot of love!

DAY TWENTY SEVEN Ovarian Cancer Awareness Month - Chemo Update

The chemo room at Unity Point Trinity Cancer Center.

This is an overdue post - ! It's amazing how the days get away from each other and here it is Sunday.

Mom had another chemo treatment on Wednesday....this time with both the carboplatin and taxitere. (last week she had a treatment with the taxitere only). It went well and she didn't have any extreme reactions. The nurses set up the drip very slowly to start so they could watch for any signs. Even though this is the first treatment with the carbo this time around, it is in actuality her 10th treatment with the drug overall. The residual effects still stay in your body even though your last treatment may have been years ago (and her last carbo treatment was in late 2009). 

Next week she will get her blood work done so they can see if the treatments have had any initial effect. She will have more treatments and right now Dr. Porubcin is thinking two weeks on; one week off; two weeks on, etc. 

The side effects hit her on Friday - she was more nauseated and tired. Yesterday she had some nausea early but was able to get over the hump. My friend Cara Banks made her some of those yummy mini-meatloaves so she will have some good meals for the week. Mom has to get some weight on her bones as she is thin enough as it is. More calories can't hurt at this point. She managed to eat a few meals over the weekend... but as it goes a few days after chemo - you are nauseated and nothing tastes good. 

Mom is really looking forward to Travis and Sam's wedding so she is going out to get a new wig for the occasion. Not sure how fast the hair loss will be, but she has less hair than she had the first time around. It did grow back nicely after the first carbo treatment, but just not as much. 

DAY TWENTY-ONE Ovarian Cancer Awareness Month - Talk to your doctor

Graphic courtesy of the National Ovarian Cancer Coalition

Mom had a pretty good weekend and didn't feel too run down after her chemo last Wednesday. She did take it easy and went out for a couple of short walks vs. what she normally does, as she doesn't want to push herself too hard. She did notice some more redness on her feet, but who knows what that symptom is related to... the Doxil made her feet red and sore, but she hasn't had that for over 9 months. We will see what this week brings when she goes back this Wednesday for the double does - taxtere and carbo.

So todays topic: talking to your doctor. If you have not done so in the past - there is no better time than now to take an active role in your health care. You have to be your own advocate.

It's important to share any symptomatic information you can, even if you're embarrassed. One of the things I enjoy about the Dr. Oz show (when I can be home to catch it) is his candor at talking to people about their symptoms. Dr. Oz talks about bowel noises, strange odors and gross oozes. Whatever we have developed in our culture about being embarrassed to talk about personal symptoms related to our bodily functions - you have to leave that attitude at the door and tell your doctor about ALL of your symptoms... no matter how weird or minimal.

Don't be afraid to speak up. Doctors/physicians went to medical school for a reason and no one expects you to be the expert. If you don't understand something - say so. If you feel like you are having a bunch of 'medical jargon' thrown at you - say so. It's important that you understand everything that your doctor is telling you.

Make the pen and paper your friend. Before your appointment, write down thoughts and questions as they come to mind. Yes, it may be in the middle of the night, but believe me you won't remember the next day or you will keep yourself up all night worrying about remembering your question. Best to write it down and go back to sleep.

More importantly, if you feel uncomfortable around your physician or are unable to really discuss the concerns that you have - find another doctor. Trust is important, and you have to have a good relationship with your doctor to get the best care for YOU.

DAY SEVENTEEN Ovarian Cancer Awareness Month - Ageless Disease

Cousin Heather and her quilt.

The reason I created this blog was to keep family and friends updated on mom's condition after she was diagnosed with cancer.

I would have never thought in a million years that there would be another family member diagnosed with the same disease - but it happened to my cousin Heather in almost the same manner as it came about with mom. She experienced the same subtle [KEYWORD SUBTLE] symptoms pretty much....however by the time she was diagnosed she had a very large tumor formed on her ovary and spread to other areas. It had gotten that far.

Ovarian Cancer is not just for older women - young women are diagnosed more frequently. Heather is in her early 40's and younger than me. She is now finishing up a hard-core round of chemo.

I read a story a couple of days ago about a 17-year old, Caitlyn, who was diagnosed with Stage 3 dysgerminoma ovarian cancer (there are even many different types of ovarian cancer - more about that in another blog post) and her story is like many others - she had abdominal pain and bloating. She had been to the doctor and they gave her some painkillers. They thought that because she was so young there couldn't possibly be anything seriously wrong. Caitlyn and her mom persisted and long story short she can call herself an Ovarian Cancer survivor.

Why worry about Ovarian Cancer when your family has no history of cancer? Because of stories like my mom's and my cousin Heather's as well as Caitlyn's. And there are hundreds of stories just like theirs. It can happen to anyone. All women, no matter what the age need to listen to their bodies and keep going back to the doctor until you have an answer.

DAY SIXTEEN Ovarian Cancer Awareness Month - Chemo Reality

Mom's birthday sundae!

Yesterday was my mom's 77th birthday! It's amazing to me that she was diagnosed with Ovarian Cancer six years ago and she is still going strong. It's also ironic that September is Ovarian Cancer Awareness month, mom's birthday is also in September and mom is starting her fifth round of chemo today.

This round of chemo is not going to be with the Doxil that she has been prescribed over the last two years. Dr. Porubcin wanted to go with some of the more what I call 'hardcore' drugs - Taxotere and Carboplatin. The doctor felt that the Taxotere/Carbo was the way to go as mom was getting closer to the Doxil threshold. There is only so much Doxil that they will administer as it has shown to be attributed heart failure.

Mom's first round of chemo in 2009 was a Carbo/Taxol mix. Taxol (paclitaxel) and Taxotere (docetaxel) are both from the same family of medications and are used to kill cancer cells. The side effects are similar and mom could have some numbness in the hands, mild nausea for a couple of days, hair loss.

Today mom is having the Taxotere only. The nurses started her drip very slow to watch for any reactions. Mom had her 'bag of benedryl' before they started the Taxo drip (and she also took steroids early this morning) to curb reactions. She tolerated it well before, however as most cancer patients know each time/each round of chemo makes you a little weaker and the side effects are a little worse than before.

But I keep telling myself that the chemo is killing the cancer, and that is what we want but it just stinks that the side effects are so harsh.

Today's session will take a few hours. Next week (on Wednesday) mom will have the Carboplatin. They they will do the same thing again after checking her blood (white cell counts, hemo, etc) to make sure she can handle it again.

DAY FOURTEEN Ovarian Cancer Awareness Month - Teal is the new Pink

It's still September!

Raising the profile of Ovarian Cancer Awareness takes time and energy - and every year I have noticed that there are more people who are getting the word out there about Ovarian Cancer education. Just look at what the consistent awareness has done for Breast Cancer. There is pink everywhere, throughout the year.

I do not want to pit types of cancers against each other, as I have had close friends and known others with pancreatic, brain, esophageal and thyroid cancer. Each type of cancer deserves it's own voice and platform. I appreciate what the ribbon symbol has done for awareness of all types of cancer.

BUT - Ovarian Cancer has taken a toll on my family and we need to keep the awareness going not just for September. I want the same top of mind awareness that we have for breast cancer - you check for lumps monthly, so along with that good practice...in your mind every day be MINDFUL of your body.

It's easy and will take ten seconds. You will thank yourself tenfold when you notice something different and take another ten seconds to make an appointment with your physician to troubleshoot the issue. Until there is a true detection process, you have to rely on yourself. #TakeActionNotChances

DAY THIRTEEN Ovarian Cancer Awareness Month - Collateral Damage

There are the cumulative effects of cancer that I don’t see people talk about too often. I think of it as “collateral damage.” As we all know, procedures – like surgery, chemo and radiation – that prolong life, can also impair life. Cancer patients must give up quality of life to gain quantity of life.

The cancer medicine, which is supposed to kill the cancer, also causes damage to the body. Over the last six years, several rounds of chemo have left mom very frail. Last year she coughed so hard that she cracked one of her ribs. When I broke my ribs a few years ago, it was because my [then] 200 lb husband came flying off a water slide full force and planted his knee on the left side of my torso. And all it takes for mom to break a rib is a simple coughing fit.

The chemo drug Doxil, which has worked very well at keeping mom’s cancer at bay, can cause heart failure if it reaches a certain threshold. It seems trite to call it a trade off – but that is what battling cancer has boiled down to – trading one deficit for another. Which is worse?

If you want to read a heartbreaking story (it is heartbreaking but very well written) go and grab Lucy Grealy’s “Autobiography of a Face.” Lucy was diagnosed at age nine with Ewing's sarcoma, a cancer that severely disfigured her face. She lost half her jaw, recovered after two and half years of chemotherapy and radiation, then underwent plastic surgery over the next 20 years to reconstruct her jaw. The reconstructive operations didn't alleviate her agony over the physical mutilation which resulted in a dependency on pain medications that eventually killed her. 

So that is a depressing story, and I don't mean to do that intentionally. But it makes me admire cancer patients that they have the courage and strength, like my mom, to do whatever they can to have just a few more years here on earth with family and friends. 

DAY ELEVEN Ovarian Cancer Awareness Month - Involving Youth

Poster from the volleyball game -FEEL THE TEAL

I am amazed by how our high school aged people are so willing to get involved with causes that matter to someone close to them. Yesterday, the Moline High School Volleyball team invited our Rock Island High School Volleyball team to participate in Ovarian Cancer Awareness Month by wearing teal to the game. I don't know the full story yet - but my feeling is that the Moline team lost someone close to them to Ovarian Cancer. Her name was Angie.

Never mind that the teams are rivals. Never mind that both teams play for keeps and that it would be a tough battle. The young ladies knew the importance of honoring someone who was lost to cancer - and also spreading awareness about the cancer. Because even though they are young, they need to know that Ovarian Cancer can strike at any time, and knowing the symptoms EARLY is the key to making sure that the disease is caught in time. That is the only assurance that we have right now.

It's never too early to start talking to young adults about watching for the signs and symptoms of Ovarian Cancer. Don't discount anyone as being "too young" to talk to about a terrible disease. Many times the younger people are more responsible than we "old" people give them credit for. And I definitely want these volleyball teams to continue the tradition every year in September. What a great thing to do in memory of Angie.

DAY TEN Ovarian Cancer Awareness Month - Check in w/ oncologist

A couple of weeks ago mom had her usual check-in with Dr. Porubcin. Overall she has been feeling well and we were both surprised to find out that her CA125 count went down slightly (50's). Mom had been having a few intestinal issues but nothing serious. Dr. Porubcin decided to run another CA125 test and also do a torso scan to check on her lymph nodes to see if there were any changes.

So today she had another appointment to go over the results - the CA125 was up to 66 and the scan showed that her lymph nodes behind her stomach were enlarged. That was enough information for Dr. Porubcin to start looking at doing another round of chemo.

Mom and I knew that she would have to do more chemo at some point in time, but when the time does come it just reminds you that the disease is the one in charge. That stinks. 

After some discussion and looking at the pros and cons of continuing with the Doxil, Dr. Porubcin decided that this time it would be best to do a course of what I call the "hard-core" stuff: Carbo and taxol. After mom was first diagnosed in 2009, that is what Dr. Porubcin prescribed to pretty much attack the cancer and knock it back enough to keep it from spreading into more areas. The good thing is that approach definitely worked. But it also knocked the stuffing out of mom and that is the bad thing. 

Dr. P decided that he wanted to hold off on the Doxil as mom was nearing that threshold. If he gives her more rounds of Doxil and she goes over that threshold, it could do some hard damage to her heart tissue. Last wee she went for an EKG and the report showed that her heart is in good condition with not a lot of damage so Dr. wants to keep it that way.

She starts next week (Wednesday the 16th) and will do two weeks in a row, take a week off, and then do two more weeks. Dr. Porubcin will closely watch how she is handling the drugs and keep track of her counts to see how long she will continue with the regimen. 

With the Carbo/taxol mix, Mom will have some harsh side effects like before (lose hair, nerve tingling in hands, fatigue). I don't like the thought of that - however if this approach knocks her cancer back and reduces the lymph node size back down and gets rid of some of her other symptoms, then that is a good thing. 

DAY NINE Ovarian Cancer Awareness Month - Finding Support

As with any side-venture, you will lose a few days here and there when you have a full time job and a holiday weekend! So here we are at Day #9 of Ovarian Cancer Awareness Month.

Over the last six years I have relied on a great online Ovarian Cancer community at Inspire.com. The group is sponsored by the National Ovarian Cancer Association but is generated by the many cancer survivors and family members of cancer survivors who are sharing stories of their experiences on the ovarian cancer journey.

The reason I write about this today is because it is important to find a place where you can ask questions, talk to others who have been through a similar experience and find support and hope when you seem to be at a dead end. You need a safe place where you can discuss health topics without there being an alternative motive. 

I have also found that I can offer insight to other women who have been newly diagnosed and feeling very lost in the quagmire of cancer information overload. Mom and I were there once too, especially when talking about all of the chemo drug options, and it makes me feel good knowing that I can offer insight and first hand information. 

DAY FIVE Ovarian Cancer Awareness Month - Advice

Here we are, September 5, and some days I feel like I have a lot to write about, and some days I hear crickets in my head. But this is important - spreading awareness about Ovarian Cancer symptoms and getting people to act on the early warning signs - so here we go.

In my mom's words, I have heard her say many times that it doesn't matter if you do not have a family history of cancer. Our family did not. Now, we do.

Most of the questions I get from people who stumble across this blog is about "what would you and your mom do differently?"

Since we are well-versed in Ovarian Cancer, I can think of three main things:

• DON'T ignore your body. If something seems weird or slightly off, get it checked out. Point blank. By the time the symptoms of Ovarian Cancer become a little more "loud" - 9 times out of 10 it has already spread and is Stage III by the time diagnosed. 
• DON'T TAKE ANYTHING FOR GRANTED. Just because you eat healthy (like my mom), Jazzercize ever day (like my mom) and take every health precaution imaginable (my mom is a nurse enough said) do not think for a moment that you won't have cancer invade your body. Since our family did not have any prior history of Ovarian Cancer, I felt that there was nothing to worry about. That bothers me now more than anything. Don't take anything for granted. It can happen to any woman. 
• DON'T REST ON ONE OPINION. Do some research, talk to others about their experiences and get second or third or fourth opinions until you find a physician that you can be comfortable with and trust. No matter if they live across the country, you deserve to have the best care and you have to be your own health care advocate. I know that there are limitations and not everyone can fly up to Mayo Clinic or search the globe for care, but you still do due diligence and ask for help from organizations (American Cancer Society) and other local cancer advocacy organizations about the best path of care for you. 

DAY FOUR: Ovarian Cancer Awareness Month - HOPE

Overall, my mom has had a great run in her battle against Ovarian Cancer and has beaten a lot of odds in the survival rate. I think I can say with some certainty that her oncologist has called her a success story.

I can say that some of that success is attributed to the great care she has received from her oncologist and the staff and nurses at the Trinity Cancer Center in Moline. The University of Iowa Hospital surgeons also played a key role in removing her type of cancer as it was not a formed tumor. Mom's cancer spread through her abdomen and lymph nodes like a spiderweb with very fine threads. It was hard to remove but I know the surgeon was thorough and picked through her innards with a fine tooth comb. I could not have asked for better doctors and nurses to care for my mom.

The thing that has made the most difference are the people who have kept mom in their positive thoughts and prayers each and every day. I know that you can't scientifically quantify all of that but it has made all of the difference in the world and has given mom all the hope she needs to continue the fight. And she will always have to fight the cancer, but it is exhausting. Not only does cancer eat away at her body, so does the chemo. Even though she is on a "summer break" right now, mom will have to start another round at some point... that is just the way it is. But she has a lot of hope and the love and prayers of family and friends. Thank you for that!

DAY THREE Ovarian Cancer Awareness Month: #TakeActionNotChances

The National Ovarian Cancer Coalition has started a campaign in honor of September's Ovarian Cancer Awareness Month called #TakeActionNotChances. Overall the campaign is to encourage and promote earlier awareness of the symptoms of ovarian cancer and get people to start an earlier conversation with doctors.

The vision of the NOCC’s new EARLIER Awareness Initiative has been created in partnership with a member of the NOCC community - a woman named Cathy - who has a story all to familiar about how ovarian cancer is finally diagnosed...TOO LATE! Read Cathy's story >> 

The sad part of the story is that Cathy did pass away after her stage 3 diagnosis - in a matter of months after diagnosis. If you go to the site link above please take the time to read Cathy's daughter's excerpt about the importance of being your own health advocate. Because the first time you have a symptom of ovarian cancer - it usually means it is too late.

We can make it a good story by advocating that EARLIER IS BETTER.

DAY TWO of September Ovarian Cancer Awareness Month

Ovarian Cancer Awareness Month Day Two Message: Be happy when you get good news!

I forgot to mention that mom had a follow up with Dr. Porubcin last week and in my mind it was all good. Her CA125 count went down quite a bit (to the mid 50s) and everything else in her blood work looked on target.

She still needs to gain some weight and I don't know how I can make that happen without going out to her house every night and dragging her to Culver's. With that strategy both of us will be packing on the LB's!

Dr. Porubcin was a little skeptical of the CA 125 count so he ordered up a scan and had her re-do her blood work again. It will be a few days before we see what that CA 125 count will be.

For now I'm going to take the good news/outcome in stride and start thinking about an Arizona visit (time to see Aunt Ruth) in January. I think some traveling will do her some good!

September: Ovarian Cancer Awareness Month!

This is the sixth year that I have been painting my toenails teal each September in honor of Ovarian Cancer Awareness Month.

It's a small gesture but it gets me to talk about the terrible disease that my mom has been dealing with since 2009 and my cousin Heather has been battling with this summer. It is a simple task for women everywhere to be aware of the sneaky symptoms and take charge of your health and ask questions when you feel something isn't right.

Every year I have the best of intentions to blog each day for the month about Ovarian Cancer, new findings, stories and preventative strategies to make sure the disease doesn't take another life too soon. It has changed my life and the lives of our family so much, I cringe every time I hear of a new diagnosis.

I get a bit of inspiration of things to write from the OCNA 30 Days of Teal Calendar. It's truly not a big deal to take a few minutes out of the day to listen to your body and take action on that nagging in the back of your mind that something is not right and you need to get it checked out. And then get a second opinion! http://www.ovariancancer.org/30days/