On Beyond Cancer

My life with metastatic breast cancer

Thank You September 28, 2014

Filed under: Uncategorized — laziesthero @ 4:46 pm

Thank you from the bottom of my heart to the On Beyond Cancer Team.  Not just the folks that walked or donated today, but to everyone who has helped with the boys, wrote us beautiful notes, sent food for us, and helped in countless other ways.  We love you all.

Before Race

In Memory             The Boys

Finish Line

 

Steeplechase Walk September 8, 2014

Filed under: Uncategorized — laziesthero @ 10:05 pm

For the past few years, Karissa and the boys have participated in the annual Steeplechase Walk that raises money for the Steeplechase Cancer Center where she received treatment.  Ethan, Ryan, and I are not only participating, but have created the On Beyond Cancer team to walk in her memory.  Anyone that wants to join can follow the link below and either join the team or donate to a great place that took good care of my wife.

http://steeplechasedistancerun.com.kintera.org/onbeyondcancer

 

The walk is taking place on Sunday September 28th in Hillsborough, NJ.  If you want to participate in the walk, you need to also register and pay a small fee for your shirt. For more information please see:

http://www.steeplechasedistancerun.com

 

Karissa Alana Hahn August 30, 2014

Filed under: Uncategorized — laziesthero @ 12:18 pm

Karissa Alana Hahn, a woman who personified strength and grace in the face of obstacles, ended her five-year battle with cancer August 28. She was 35.

Karissa inspired those around her as she refused to let cancer get in the way of life. Between chemo treatments and doctor’s appointments, Karissa could be found hiking with her husband Mike, doing science experiments with her two boys, or planning adventures with her mom and sister. Every Thursday, Karissa donned a pink lab coat and volunteered at Somerset Medical Center’s patient boutique, helping fellow patients pick wigs and scarves – she’d advise them on what looked best with their complexions – and processing medical billing in the back office.

“No matter how difficult the situation was, Karissa would never show it,” her friend Winnie wrote. “She is the most positive person that I have known. When I needed advice from her (mostly over silly stuff like job interviews and baby advice), she was always like a big sister to me – to comfort and guide me through.”

Karissa’s blog, On Beyond Cancer, reached people around the world, and she helped start a support group for young women with cancer. She raised money for breast cancer research, modeled in fashion shows for the cure and posed as “Mrs. August” in a breast cancer calendar.

Karissa had a studious side as well. A valedictorian at Keyport High School, she studied biology at Rutgers University and completed a master’s degree in public health. She worked as a medical researcher at UMDNJ, where she crunched numbers for medical studies and helped investigate a wide range of diseases.

It was at Rutgers that she met Mike Hahn, her husband and partner in life. After Mike proposed (following the Rutgers tradition of popping the question at Passion Puddle), they were married April 25, 2003. They have two sons, Ethan and Ryan — who inherited her smarts, her analytical nature and her good humor. Karissa enjoyed spending time with family, whether it be reading books or sewing giant stuffed snakes. She was a mom who made things fun, constantly researching new parks to visit and different crafts to try. She served as an example to new moms – who could often expect a care package of kids’ clothes or baby toys from her in the mail.

“She lived every day to the fullest and taught us much about what it meant to live,” said her friend, Pam. “She left the world a better place by her presence in it.”

In addition to her husband and her children, Karissa is survived by her parents, Margie and Tom Fischer and Bill and Tina Clarke; her grandfather, John Clarke; her in-laws Jeff and Jolene Hahn; and her sister Sara Clarke-Lopez. She is loved by many and will be missed by her aunts, uncles, cousins, and of course, her friends.

A viewing and service will be held Sunday, August 31, from 2 to 5 p.m. at Bridgewater Funeral Home, 707 East Main Street, Bridgewater, NJ. Karissa will be buried at 10 a.m. Tuesday at St. Joseph’s Cemetery in Keyport. In lieu of flowers, donations may be made to a college fund for her children, care of Michael Hahn, Trustee.

 

She was the strongest person I have ever known August 28, 2014

Filed under: Uncategorized — laziesthero @ 10:34 am

I am so sorry to tell you that Karissa passed away today around lunchtime surrounded by our family at home. She fought so hard to be with us for 5 years, which we were so grateful for. I have never cried so hard in my life, but she did give us a gift of a smile right before she passed to remember her with. I know I will see her face anytime our 2 boys smile.

I will update again when we have information about her funeral, but I wanted everyone to know about what happened today.

If you have any happy stories you would like to share in the comments about Karissa, our family would love to read them.

 

Goldilocks and the 3 pain patches August 19, 2014

Filed under: Uncategorized — onbeyondcancer @ 7:33 pm
goldilocks-and-the-three-bears-story-3

Hoping I find the blue chair soon.

I’ve been having a lot of trouble with pain management this week.  I started Fentanyl patches for pain about 2 weeks ago.   They worked well for awhile, but then the pain, especially from my abdomen, increased.  My doctor recommended switching from 25 mcg (micrograms) to 50.  While I was waiting to get the prescription for the 50, Dr T said to wear two 25 patches together, so I used all but one in the box.  As it happened, fifty was just too much for  me and I was falling asleep sitting up, even when reading to Ryan.  So the dr said I should go back down to 25, then maybe try combining the 25 (lowest adult dose) with the 12.5 (children’s dose).  Cheryl picked up my new prescription for me and Mike took it to the pharmacy to fill it.  The insurance company decided it was a refill, and that I had to wait a certain number of days before they would fill it.  Argh!  That meant going a few days with no patch and just Percocet.  Do you think I might have been a little grumpy?  Also burst into tears a couple of times.  Anyhow, today I finally got the 25 +12.5=37.5.  Let’s hope it works!!

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The 2 patches, just under my collarbone. The pediatric one is super tiny, just to the left of the adult version.

 

This week’s chemo August 16, 2014

Filed under: Uncategorized — onbeyondcancer @ 7:48 am

Sorry, I’m a bit behind on my blogging.  A bit of good news this week.  My counts were fine (which surprised my Dr), so I was able to get chemo.  Also for the second week in a row my liver enzymes and bilirubin have improved.  Dr T sent my Foundation One genetic testing to a compassionate care program at Novartis.  The program provides drugs that are not yet FDA approved to patients who might benefit from them.

 

Started Navelbine today August 6, 2014

Filed under: Uncategorized — onbeyondcancer @ 3:28 pm

My counts were good today, so I’ve started Navelbine.  The premeds are Emend and Aloxi for nausea as well as fluids.  The Navelbine is given as an IV push, so it will be quick.

I’m feeling good today, having a nice time with my mom.

 

Not enough fluid for paracentesis August 4, 2014

Filed under: Uncategorized — onbeyondcancer @ 2:52 pm

Well, the paracentesis was a no go today.  The fluid in my abdomen is spread out in small pockets, the largest one 100mL.  It just wasn’t possible to remove enough to help with symptoms like pain and bloating, so the radiologist didn’t recommend it.  It does seem like it’s decreasing a bit.  We’ll just have to hope that chemo will help.

 

Navelbine next week, Paracenteses Monday July 30, 2014

Filed under: Uncategorized — onbeyondcancer @ 9:07 pm

At this week’s doctor’s visit my absolute neutrophil count (a ratio of one kind of white blood cell to another), was too low for chemo.  So I’ll start Navelbine next Wednesday.  I got started with the Fentanyl patch yesterday and it has helped with pain tremendously.

 

I talked Dr. T about getting a paracenteses, we have scheduled one for Monday.

Paracentesis is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites .   Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis.

 

So I am hoping this procedure will make me more comfortable, decreasing the pressure on my abdomen.

 

Visiting nurses July 28, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:46 pm
image

Visiting nurses brought, so pretty.

Sorry I haven’t been blogging much lately.  Something to do with my rising liver enzymes made hard for me to get the words in my head onto the page.  It has improved quite a bit, no idea why.  As Mike told you earlier I signed up with visiting nurses, or also called palliative care.  These nurses are experts in things like pain management, home healthcare, and helping you get necessary equipment like canes, wheelchairs, etc.  They do home visits, help figure out what you might need or want, and report back to your doctor.   My visits will be one or two times a week.

I had an intro visit Sat so I could learn about the program and my first official visit with my Nurse Mary was today.  She took my vitals and checked on (my now) significant swelling in my abdomen and feet.  She explained possible treatments for my abdominal swelling using suction to remove it (done in the hospital).  If it becomes a recurring issue, you can have a permanent tube so that you could remove the fluid at home.

The most useful part of the visit was the pain management. So far, the strongest pain med I’ve been given has been percocet.  That might be because I have difficulty with uncontrolled vomiting with some meds.  I feel like the percocet is not enough now.  Mary suggested a patch called Fentanyl.  I would start with the lowest dose and patch stays on for 3 days, slowly releasing medicine during that time. This sounds like it could be a huge help.  I’m going to start anti nausea drugs at the same time so I get get ahead on that.