Friday, December 4, 2015

Chemo week

Mom made it through chemo on Wednesday. She ended up getting the double dose (taxetere and carboplatin) so she will be down quite a bit this weekend. I think that is all that she is going to get for the month of December. The nurses adjusted her schedule again and I am going to double check the dates.

Yesterday she had the Neulasta shot, which is supposed to boost the white blood cell count. She needs that as her low white cell count is what has been holding her off on chemo the last couple of weeks.

Even after the Thanksgiving holiday she lost another pound! I was surprised. Last week at Thanksgiving (my in-laws Tim and Lisa hosted) she had a big plate of food, plus we sent her home with leftovers. She really needs to keep her weight up. I know it will be hard this weekend after the chemo treatment - she is able to keep food down but still feels nausea quite a bit and I've heard her say many times "nothing tastes good."

She loves cards so keep the cards coming! Even if you send a Christmas card already, send another one. It's nice to see her mailbox full of card envelopes.

Tuesday, November 24, 2015

Chemo postponed

A "Barb Sandwich"
 Tom and Tim are looking forward to
their annual turkey battle. 
Mom's blood counts were not up to par again this week (the white cell count is still low) so she did not have chemo today.

She has an appointment for next week (pending blood work).

The good thing that comes out of this is that she will have a nice Thanksgiving this week and not have to worry about side effects - nausea, fatigue, etc.

My in-laws are hosting this year so all mom has to do is show up and eat! And we will be sending her home with some leftover turkey care packages as well!

Wednesday, November 18, 2015

Chemo postponed

Mom and her new wig. 
Mom had her blood work done yesterday (routine; always done the day before chemo treatment) and it looks like her white cell count is too low to have a treatment today.

This is the first time that her white cell count has been low. She was scheduled to get a Neulasta shot after this treatment (to prevent her white cell count from dipping) but since the treatment is postponed she will have to wait until next week. Not a big deal but just inconvenient.

Hopefully she can have her chemo treatment next week. Monday they will do another blood test and then go from there.

The good news is that we can go shopping this weekend since the Red Mill Garden in Atkinson is having their open house. The crummy news is that she may not feel very well next week and she will have to play Thanksgiving by ear.

Wednesday, November 11, 2015

Chemo day

Today is a chemo day. Mom is on her third cycle of the Taxitere/Carboplatin treatment.

This morning Dr. Porubcin was happy with her blood counts (liver good; kidneys good) and he is very interested to hear what her CA125 report will reveal. We will get that number in the next few days. And mom is even up a pound - weighed in at 98 pounds - so all is good!

Doctor wants to take her off of the simvastatin for now, so at least she will have one less pill to take during the day. This particular treatment of drugs (mainly the Taxitere) has been wearing her out more, so he is also going to try and pace her treatments through the holidays.

All things considered she is doing well and almost done with her Christmas shopping! As for me - haven't even started yet! Sometimes it is just all about the things that we can't buy that we want for Christmas the most ... to be around friends and family and to have a great meal at the table.

Wednesday, October 14, 2015

Chemo Day

Today was a chemo day. It went well and no problems. Next Wednesday she will have the two doses - Taxitere and Carboplatin (today was just Taxitere). I don't think this weekend will be too difficult with the side effects, but next week will be a different story. Mom had a very hard time after the second treatment with the carbo. It took her quite a few days to feel half way decent.

Mom's hair is coming out in clumps already, so after chemo today we went over to Betty's Wigs to get mom's new 'do. It looks really great and they did a great job with the color. She is going to go into her hair stylist this week and shave the rest of her hair off since it is falling out so fast and a lot sooner than expected. In hindsight I should have taken a photo.

Mom, Aunt Rosemary, Aunt Carol and Aunt Ruth
Last weekend was the family wedding weekend in Streator! Travis and Samantha had their ceremony and reception in an old masonic temple hall that has been  renovated/updated for events. It was a very cool place and perfect venue.

Mom's youngest sister Aunt Ruth and hubs Uncle Bernie made the trip from Arizona and we all ended up staying in the same hotel in Ottawa. Mom and I were toying around with the idea of heading back to Arizona for a visit in January but not sure how she will be feeling after her chemo treatments are over.

Heather (my cousin who went through chemo again over the summer for ovarian cancer) was able to make it to the reception. It was nice for her and mom to talk a bit about how they both have been managing, and did both of them a world of good to be around family. That is the best "treatment" of all - the hugs and prayers! I wish that was all that was needed to beat this terrible disease.


Wednesday, September 30, 2015

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!

Sunday, September 27, 2015

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. 


Monday, September 21, 2015

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.

Thursday, September 17, 2015

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.



Wednesday, September 16, 2015

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.

Monday, September 14, 2015

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

Sunday, September 13, 2015

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. 

Friday, September 11, 2015

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.

Thursday, September 10, 2015

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. 

Wednesday, September 9, 2015

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. 

Saturday, September 5, 2015

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. 

Friday, September 4, 2015

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!

Thursday, September 3, 2015

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.

Wednesday, September 2, 2015

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!

Tuesday, September 1, 2015

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/

Monday, June 22, 2015

Family reunion & doctor follow up

Ransom Rat Pack
LtoR: Millard and Claire Brewick (cousins of Glenn),
Don Gillette and my grandpa, Glenn McCann.
Summertime is the time for family reunions. Last weekend mom and I (along w/ my hubs Tom) jumped in the car and headed to Ottawa for the McCann family reunion. There were quite a few chunks of families there - my mom's group (Glenn McCann family); cousins (Claire Brewick's family) and more cousins (the Welwoods) and then cousins Ron and Peggy (Peggy's mom is a McCann). Everyone is under the McCann umbrella somehow so that is the connection. 

I'm not even going to try and type out how who is related to whom. It get's weird when cousins - Claire and Glenn to the right - (Glenn is son of Earl McCann; Claire is son of one of Glenn's aunts not sure which one) marry a daughter and an aunt of another family (my grandma Dolores married Glenn and her aunt Maxine married Claire) so the McCann's are close to the Brewicks (blood relations and marriage). It seems like I always mis-identify someone. For the longest time I thought that some of grandma and grandpa McCann's farm neighbors were cousins - that is how close the families are in Ransom, IL. 

The only thing I DO KNOW is that my hubs' family is from Arkansas and that Tom and I are not cousins. 

DOCTOR VISIT UPDATE:
Mom had a routine blood-work checkup a couple of weeks ago, and it seems that her counts are up slightly again. Since she is having no other symptoms, Dr. Porubcin will make a note of it and check in again in a couple of weeks. Mom's feet are a bit red and crusty in spots (still a side effect from the Doxil) but I think that is about it - other than that she is feeling good. 

Wednesday, May 20, 2015

Advocating for Ovarian Cancer

It sounds strange to say that we are advocating for ovarian cancer... but that is what creating awareness is all about. I scour a lot of blogs written by women who are living with ovarian cancer. The thing that sticks out about many of the women's personal stories is how they missed their symptoms at first. Even more startling is how their physician also missed or discounted ovarian cancer symptoms. Then months go by. And in those months, the ovarian cancer is growing and spreading... because why would any body be concerned about a little gut trouble or bloating?

That is why we need to be ovarian cancer advocates to talk about this with other women and empower women to be their own self-advocate if those subtle symptoms start to creep up. Because it can happen to any woman. Cancer history or no cancer history.

Self-advocacy does not mean that you have to climb up on a soapbox or sign up to give presentations in your local service club circuit. In the personal context, it means that you arm yourself with information to feel comfortable about being proactive and communicating clearly about your health concerns. It ultimately means that you are taking responsibility and assuming some control of your life when you have that nagging question in your head about "is there something wrong with me?"

We are all ovarian cancer advocates – families, friends, nurses, doctors and caregivers. No one should be shy about being concerned about their health.

I have run across many great organizations that are great about spreading awareness of Ovarian Cancer:

  • Teal Toes http://www.tealtoes.org/ 
  • Ovations for the Cure http://www.ovationsforthecure.org/ 
  • Teal Diva www.tealdiva.org 
  • Norma Leah Foundation www.normaleahfoundation.org
  • Ovar'coming Together http://www.ovariancancerin.org/ 
Please add your voice to the mix!

Sunday, May 10, 2015

A Happy Mothers Day Weekend!

Me and mom at Race for the Cure in Peoria.
Mom and I took a short road trip to Peoria this weekend to participate in the Race for the Cure in celebration of my cousin Laurie who had a mastectomy in January. Laurie has a great chance as they found the cancer right away and were able act quickly and remove all of in in surgery. She has no trace of cancer left in her body! It is a great thing to celebrate - how far cancer detection (in some cancers) has come in the last two decades. Watching Laurie in the sea of pink shirts was very intense as I had a true scope of the impact. Now that I have a family member who has had breast cancer it is all different to me now.

I was also celebrating mom this weekend as she was a true trooper and walked the entire 5K course with her sister (Rosemary), cousin Alaina and cousin Melinda and her daughters. We had a great time hanging out and had a thought that we should do that more often.

I added a streak of teal to my hair for mom and also for cousin Heather who couldn't be with us that morning. Her cancer fight is not over just yet... she is now starting another heavy round of chemo. I pray for her every day and hope that she can have the same success that my mom has had over these last few years. That is all we want - more time to spend around those we love and care about.


Thursday, May 7, 2015

BEATing Ovarian Cancer: World Ovarian Cancer Day, May 8

My mom Barb and cousin Heather, 2014

Tomorrow, May 8, is World Ovarian Cancer Day. Why is this important? Because the two pretty ladies you see here had no reason to suspect they had ovarian cancer – there was no family history, and their subtle symptoms were no cause for immediate alarm and they were both diligent in getting their annual checkups (which detected nothing abnormal). Yet, both were diagnosed with ovarian cancer very late in the game – Stage III. That is too late.
Tomorrow, World Ovarian Cancer Day is all about creating awareness for Ovarian Cancer symptoms as THERE IS NO EARLY DETECTION method for ovarian cancer. We have early detection screenings for cervical cancer (pap smear), or breast cancer (mammogram and self exam), but right now the only thing women have to rely on to catch Ovarian Cancer is their own self-awareness about what their body is doing and feeling. 
So take the time to be aware of the symptoms of ovarian cancer. Be ready to ask your general physician if they take into consideration the possibility of ovarian cancer the next time a woman comes in and complains about bloating, bowel issues, eating less but feeling fuller, etc. Yes, you can ask your doctor what they know and what their experience has been. That question alone may save your life and the lives of other women like my mom and cousin who have no family history of cancer. 
One of our local ovarian cancer foundations, the Norma Leah Foundation, has a great campaign that makes it really easy to commit the ovarian cancer symptoms to memory - it's called the BEAT campaign: 
  • Bloating that is persistent 
  • Eating less, feeling fuller
  • Abdominal and/or back pain
  • Trouble with your bladder or bowels
It's easy to remember B-E-A-T and they also offer cards that you can keep on your mirror. 

Also take the time to visit the World Ovarian Cancer Day web site at http://ovariancancerday.org/ 

Thursday, April 30, 2015

World Awareness Day for Ovarian Cancer - One Voice Closer

This year on Friday, May 8 marks the third anniversary of World Ovarian Cancer Day. It is dedicated to creating and raising awareness about ovarian cancer. On this day, ovarian cancer awareness organizations from across the world work together with a singular focus and message for ovarian cancer and its symptoms.

It's ironic that on the next day, Saturday, May 9, Mom and I will be participating (mom walking/me running) the Race for the Cure in Peoria in support of my cousin Laurie who was diagnosed with breast cancer earlier this year and underwent a mastectomy. As I have mentioned before, we have too much cancer in my family.

Thanks to the awareness of breast cancer and the early detection practices, cousin Laurie has a good prognosis and a long life ahead of her. I wish I could say the same for the awareness of Ovarian Cancer. We still have a long way to go in order to get it to the level where women will pay close attention to their bodies and become familiar with the symptoms AND be proactive about those subtle symptoms. That is what awareness is all about.

And we also need to push for a better Ovarian Cancer early detection/screening method, like a pap smear is to detect cervical cancer. I know it can happen and we need to keep encouraging those who are doing the research to KEEP GOING until they can nail down a procedure that works. There are women out there right now who have Ovarian Cancer and don't know it and WON'T know it for months. We can't let them go that long.

WHAT CAN YOU DO? Sign the pledge - and share it with others http://ovariancancerday.org/pledge/

I like their sound bite - "We are one voice closer to overcoming this disease."

Awareness is still the best defense against ovarian cancer, so add your voice and build one voice for every woman to overcome ovarian cancer.

Tuesday, April 21, 2015

Changing family history of ovarian cancer

Mom and Heather, September 2013
One of the ways you are supposed to determine your risk of ovarian cancer is to look at your family history. As of 2008, we had no history of ovarian cancer in our family.

Then my mom was diagnosed in 2009. So my history was changed.

My cousin Heather (relation on maternal side of the family; mom's brother Larry's daughter) was the first one of our/my generation to be diagnosed with ovarian cancer. She is only 42 years old.

And unfortunately, after a short break off of chemo, Heather is going back on again after her scan yesterday showed lesions on her liver, spleen and abdominal wall. And as of yesterday she was having to make some quick decisions about what course of treatment to take - Carboplatin, Avastin with either Taxol or Gemzar.

Mom's oncologist Dr. Porubcin suggested Gemzar but decided to put her on Doxil instead... and the Doxil has worked quite well for the last three years. The side effects have been minimal compared to Carbo/Taxol mix mom had when she was first diagnosed in 2009. She was very fortunate that her cancer did not make it to the tumor level. Small "fibers" of the cancer had attached itself onto the omentum and some lymph nodes in addition to mom's ovaries. The surgeon who performed the oophorectomy/hysterectomy said he had removed most of it and felt that she would have a good survival rate.

When Heather was diagnosed in 2013, she had a tumor the size of an orange on her ovary and was Stage III. With no family history of cancer how was Heather to even know what was going on in her body? It's the same ovarian cancer story you hear over and over again about the sneaky and subtle the symptoms of the disease.

I am coming to the conclusion that there is too much cancer in this family. So now we go from No-Family-History-of-Cancer to Family-History-of-Cancer and I try not to worry about how much that change in history is going to affect me or generations after me. I am somewhat relieved that I had a son and no daughters... but if and when my son has children, a daughter, some day... how will she be affected?

That is why we need an early detection method for ovarian cancer now. Cures and preventative measures are great, but if we had an early detection method, then ovarian cancer would be just as treatable as cervical cancer and breast cancer.

I don't know how to get there (early detection) except keep sharing my mom's story (and Heather's too) so that women will understand that cancer can happen to them too, regardless of family history. And keep advocating for an early detection method.

In the meantime - please keep my mom and Heather in your prayers.


Monday, April 13, 2015

Joan Lunden: Attitude of survival

Joan Lunden at the River Center
I had the privilege of hearing Joan Lunden speak at our local Gilda's Club luncheon the other day in Davenport at the River Center.

I knew Joan had been diagnosed with breast cancer (triple negative - a very aggressive form of breast cancer) last year but did not read any more about her treatment or prognosis.  Honestly, Joan looked FANTASTIC.

Midway through her talk I noticed that Joan had some of the same patterns in her life that my mom has had in her life. Joan was a caregiver to her mother, who suffered from Alzheimer's. My mom went through the same thing with her mother, my grandmother, Dolores who also suffered from Alzheimer's. Joan's mother died in 2013, and a year later Joan was diagnosed with breast cancer. My grandmother Dolores passed in 2008, and almost exactly a year later my mom was diagnosed with Ovarian Cancer in 2009.

And, just as my mom was surprised about her cancer diagnosis, Joan was surprised as well. Both had no family history of cancer. Joan said she has always been an advocate of healthy eating and being active - just like my mom. I have always considered my mom one of the healthiest, fit people I know - my mom was the Geneseo Jazzercise All-Star and has been going to the Jazzercise studio for years. I remember going to Jazzercise once or twice and I had a heck of a time keeping up. And that was 20 years ago.

I was surprised to hear Joan talk about feeling guilty over being diagnosed with breast cancer. She said she felt that somehow she must have done something wrong along the way. But Joan made a good point: don't let anything zap your attitude. She knew that she needed strength and energy to battle cancer, and she had to stay positive. My mom also knows that attitude is the key to battling cancer and I believe that my mom's positive attitude has enabled her overcome her cancer and keep it at bay.

Joan also talked about being your own patient advocate and being persistent in your health care. She made the analogy of being "shot out of a cannon" after she was diagnosed with cancer, and I couldn't agree more. After diagnosis, it is a whirlwind of information, opinions and treatment options. You have to first and foremost advocate for your own care and make the decision. No one else can make it for you.

The one thing that saved Joan's life: early detection. That is the one thing that we don't have for ovarian cancer - early detection and screenings. The standard of care for ovarian cancer has a long way to go. The best we can do is tell women to "pay attention to their bodies" and act on those "subtle symptoms." Education and awareness.

So until then, we have two stories of two women who want to be cancer survivors. Saying to yourself that you will "beat this no matter what" is the most important thing you can do for yourself, and having a positive mental attitude is the key.

Monday, April 6, 2015

CA 125 count, eye surgery...anniversary

Barb and Harry, mid 1960's
Today, April 6, is Harry and Barbs wedding anniversary! I can't remember if they were married in 1962 or 1963. I think my cousin Daryl was born in 62 and then they were married in 63. She is napping right now (we were up at 4:30 a.m. today for eye surgery!) so I will ask her when she wakes up.

Harry and Barb were quite the hip couple back in the day. If my father were still alive today they would have been married over 50 years.

Mom had her scheduled blood work done last week and it showed that her CA125 level went up slightly. I'm not thinking this is a big deal because her CA125 level has gone up and down by a point or two over the last couple of years. Of course I get excited when it goes down... but when it goes up a little it's a non issue...she doesn't have any other symptoms and is feeling good. Her next visit with Dr. Porubcin isn't until the end of May.

So today mom had eye surgery (left cataract) early this morning and everything went well. She has known for awhile that she needed cataract surgery, so since she is on a chemo break, now is the time. The procedure itself doesn't take that long...but we were at Trinity Unity Point for about 3 1/2 hours total time with the waiting and prepping with eye drops, etc. In about 4-6 weeks she should be noticing improvement in her sight. Dr. Wagle (SP?) said that in a couple of years mom will probably need her right eye done.

We had a nice Easter yesterday - mom sang in the choir at TWO church services... and then we went to brunch with two out of three boys and then my in-laws (Tom's brother and family). It was a nice day to be with family.


Wednesday, March 25, 2015

Angelina effect - can it lead a new cause for standard of care?

Family portrait - teal toes.
I am grateful for the Ovarian Cancer awareness that has been brought about by actress Angelina Jolie Pitt's medical choices and am grateful to her for sharing the concerns of ovarian and breast cancer after losing her mother and aunt to ovarian cancer. Angelina knew her increased risk and took her medical care into her own hands.

From Angelina's article that she wrote for the New York Times in May of 2013: "I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer," she wrote. "It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options."

I think the important thing to remember is that each individual has to weigh their own options, and that women need to have the options available to them. This is where we need a good standard of care not only for those who are at risk of developing cancer, but for those who have had no history of cancer in their family, and yet, are diagnosed with cancer well into Stage 3. Like my mom and my cousin Heather.

What would my mom have done differently had she been able to know her risk? For her, it wasn't good enough to keep a "close eye out for cancer." Her symptoms were symptoms of many other ailments. It was a process of ruling out one thing over another. WHAT IF Ovarian Cancer awareness had been more prevalent 6 years ago... or even 10 years ago? I remember when my mom was first diagnosed with Stage III Ovarian Cancer in March of 2009. Even then people were saying "At least we caught it."

Looking back now, that's not good enough.

There is not a good screening test for ovarian cancer yet... like the equivalent of a Pap smear, which detects pre-cancerous changes in the cervix. Or like a mammogram, which can catch breast cancer very early. Even the CA125 test has mixed results and is not a reliable indicator. It is something to watch, but it's not a definitive identifier of ovarian cancer.

So we have to rely on awareness... which is all fine and dandy,  but we are still at the same point we always have been - talking and sharing Ovarian Cancer symptoms and telling women to pay close attention to their bodies and talk to their doctor. Many organizations do great work on the awareness front. But that is still not enough.

We have to start moving in a direction of a better standard of care for all women where ovarian cancer is concerned - because all women can be at risk.

Thursday, March 19, 2015

World Ovarian Cancer Day May 8

September is designated as Ovarian Cancer Awareness month, however there is another important day on the calendar that is about bringing awareness to Ovarian Cancer: World Ovarian Cancer Day on May 8. The event began in 2013 so it has a couple of years under it's belt.

We are fortunate in the Quad Cities area to have an active organization the NormaLeah Ovarian Cancer Foundation and there are many volunteers who are a part of the OCNA (Ovarian Cancer National Alliance) who are out in the community educating people about ovarian cancer symptoms and disease awareness.

I find surprising that we actually need to educate some physicians on the symptoms - and I'm not blaming or pointing the finger as the symptoms ARE similar in scope to some other ailments. But case in point, my mother had to be persistent in getting to the official diagnosis.

Unlike more common cancers, there are significant challenges as ovarian cancer has been largely overlooked and research has been underfunded to my understanding. Ovarian cancer symptoms are often misdiagnosed, as they can be confused with symptoms of other less severe illnesses, particularly gastrointestinal complaints, and the absence of an early detection test, and the resulting late diagnosis and poor prognosis.

This needs to turn around, and education and awareness are key. As I have been finding my way around, I have come to a conclusion that the standard of care needs to be raised - the current "standard of care" for ovarian cancer is surgery and chemotherapy... and that has remained unchanged for many years. The survival rate is not that great after diagnosis, mainly because it is diagnosed so late. So raising the standard of care for ovarian cancer to require some sort of screening test and an early detection standard in addition to educating each and every doctor in the United States about the subtle symptoms of Ovarian Cancer. I think that should do it.

And there are organizations such as NormaLeah and OCNA who are getting out there and talking to doctors as well as medical students about Ovarian Cancer. So the process has started.

Next time you are at the doctors office, mention Ovarian Cancer and ask what they know. Ask them if they include Ovarian Cancer in their list of diagnosis when a woman comes in with gastrointestinal issues but can't quite put their finger on it. That alone will make a difference.


Friday, March 6, 2015

Paying respects

Burnell's funeral procession of Allis Chalmers tractors. Photo
courtesy of Times, Ottawa. Doug Larson photog. 
My mom is from a small rural town in Illinois called Ransom. Last time I noticed the population was around 450 I think. Maybe less. It is the quintessential sleepy farm town. I spent a lot of summers in Ransom as a child...hanging out with Grandma and Grandpa McCann on the farm. I have good memories there and good memories of the people there.

A couple of weeks ago, Ransom lost one of their longstanding town members - Burnell Bergeson. The Bergeson family farm was north of Grandma and Grandpa McCanns farm. Burnell and Grandpa McCann were buds. After Grandpa died, Burnell and Sherry were the best and took care of Grandma and checked in on her a lot.

Once mom heard about Burnell I knew that she had to go to the visitation and funeral. I wanted to go as well because Burnell was one of the kindest people I ever met. Next to my grandpa - he was one of those few people who could talk to anyone at any time. One of my favorite stories of my grandpa was when he got tied up on the phone one evening and grandma could not figure out who he was talking to. About 20 minutes later grandpa hung up the phone and grandma asked "Well who was that Glenn?" My grandpa replied "I don't know it was a wrong number." Burnell was that type of guy too.

I know it was Burnell's funeral, but it was very endearing to me to see everyone so happy to see mom and tell her how good she looked. I think those are the kind of experiences that has seen her through those tough times when she was first diagnosed with cancer. Another testament to the power of prayer and positive thoughts. Ransom will always be mom's hometown and the people there will always be there to greet her with open arms...and that is the best healing remedy of all.

Thursday, February 12, 2015

Doctor visit

Mom had her scheduled 3 month appointment with Dr. Porubcin today and he said that everything (counts, health, etc.) looks very good. And she is up to 100 pounds! I am more excited about that than anything as she really needs to put on weight. Mom attributes the weight gain to all of the funeral luncheons that the church has been having the last couple of weeks. I don't know why that is humorous to me but it is.

The CA 125 count went up to 16 (it was 8 the last time)... however that is still low and we are used to the number going up and down and up and down. Dr. Porubcin was not too alarmed by it and honestly neither are we. It's the reality of living with cancer.

Mom will have a check up with him in another 3 months. Since she is having a little hiatus from the chemo, she has scheduled cataract surgery for April 6. We went to Eye Surgeons Associates a month ago and they determined that she was a good candidate. She is only having one eye done - the other eye isn't quite that bad... so that one will have to wait and they think that she will be ready to have the other eye done in a couple of years. If that is the only thing that we have to be concerned about over the next couple of years that's fine with me!