On Beyond Cancer

My life with metastatic breast cancer

Cancer center christmas party December 20, 2013

Filed under: Uncategorized — onbeyondcancer @ 9:32 am
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Each year the Steeplechase Cancer Center and the Somerset County Prosecutor’s Office throw a Christmas party for children whose parents are being treated for cancer.  The prosecutor’s office employees purchase gifts for each of the children and Santa arrives on a SWAT truck.  It’s always a fun event, but it was extra fun this year since the women from my support group were there with their kids.  We’ve had a few playdates, so the kids are good buddies now.  I think that it has helped them to know that there are other kids in the same situation. 

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Visiting with Santa.

 

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Having a little snack.

 

 

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Retiring February 1 December 19, 2013

Filed under: Uncategorized — onbeyondcancer @ 9:16 am

My retirement application went before the state board last week and was approved.  I am officially retiring on February 1.  My last day of work will be January 30.

 

I am still in complete shock that the government processed this so quickly.  I’ll be spending a lot of January finishing up projects, including a paper that I hope to submit to a journal by late February.

 

After I finish working I’ll have to start the social security disability application process, which should be another adventure.

 

More on the liver biopsy December 18, 2013

Filed under: Uncategorized — onbeyondcancer @ 9:56 am
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My post Monday on the liver biopsy was a quick one because I had an IV in my right elbow making it hard to type.  Overall this biopsy was less painful than the last one, but it was equally traumatic.  I was fairly calm Monday morning, but I took 2 Ativan anyway.

 

I had a different doctor for this procedure.  His medical skills were very good, but his people skills were bad.  They did a CT to find the biopsy location and marked it in ink.  Then he numbed my skin.  He had been explaining each step as he went along, so imagine my surprise when he suddenly he jabbed me with the big needle right into my liver with no warning. Holy cow! I was so shocked I just burst into tears.  Luckily there was an awesome nurse who immediately gave me something in my IV to help me relax.  I asked the Dr why he did that and he said people tense up if he warns them first.  So then I asked whether anyone ever threatened to punch him in the face.  😉 OK, so that wasn’t nice, but he did have it coming.

 

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The biopsy needle looks like this!!

 

He did get it in the right spot and got 4 good samples.  They did 2 chest xrays just to make sure my lung didn’t get pricked and I had to wait in recovery for a few hours.  I didn’t end up needing any pain medication.  I got home around 3pm and took a nice long nap.

 

I’m in the process of figuring out how to get the sample sent to the testing company.

 

Liver biopsy done December 16, 2013

Filed under: Uncategorized — onbeyondcancer @ 2:04 pm

I’m in recovery now. They got 4 good samples, but it was intense.  Glad to be done.  Feeling OK.  Have to stay for awhile and get an xray before I go home.

 

Retirement Plans December 12, 2013

Filed under: Uncategorized — onbeyondcancer @ 5:55 pm
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A few people have asked what I plan to do when I retire.    Of course I have two little boys who will be happy to have more of my time.  When I told them I wouldn’t be working after January, Ethan said “Yes! Now we can have more playdates.”  Haha.  So I think I’ll be a chauffeur.  What he doesn’t know is that while he is playing with his friends, I get to chat with their moms who are MY friends. 🙂

 

Doctor’s appointments, scheduling appointments, and dealing with insurance issues keep me busy for at least a full day every week.  I’ll have time to attend programs for cancer survivors like exercise classes, stress management, support groups, and information on new treatments available.

 

I’ve already talked with my boss about volunteering a little in the office.  I expect I will mostly be working on writing and editing articles and grants.

 

I’ve signed up to volunteer one morning a week at the Wellness Boutique at Somerset Medical Center.  They sell wigs, special lingerie and swimsuits, and other items that cancer patients need.  I figure that since I’ve used most of the items, I can probably help people who are wondering what they should pick.  The boutique manager is a great lady who has been a big help to me, so this will be a fun and hopefully fulfilling opportunity. 

 

A few other odds and ends I have planned…

  • Writing the school newsletter
  • Doing some cooking, especially baking muffins and breads
  • Organizing and decluttering my house
  • Using those awesome gift cards my coworkers gave me
  • Taking some trips to Florida to visit my sister 🙂 🙂

 

 

Liver biopsy scheduled December 11, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:49 pm

I made some calls yesterday and today to get  my liver biopsy scheduled.  I have had so many scans that I made friends with the technicians and my favorite tech helped move the paperwork through for me.  So I’m scheduled for Monday morning.  I wanted to get it done soon so I can stop stressing over it and enjoy the holiday. 

I have to get some blood work done Friday – general stuff and to check how well my blood is clotting.  Monday morning we have to be at the hospital at 8:30.  The procedure itself takes around an hour, then I have to wait in the recover room for a few hours to make sure I’m feeling OK.  My doctor has given me the OK to take some Xanax the night before so I can sleep and a double dose before the test in the morning.

After the biopsy the samples will be sent for testing which should take about 3 weeks.  By mid to late January the results should be back.

I’m really nervous about the procedure, but it feels good to be getting things done.  I had chemo today too, everything went well. 

 

Getting genomic analysis! December 10, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:48 pm

We braved the storm this morning to head over to the Cancer Institute of NJ for an appointment with the clinical trial Dr.  She did a thorough exam and history.  She was super nice and said that I qualify for the trial.  She explained the protocol and the actual genetic analysis in detail (boy was I glad a paid attention in genetics class).  The testing could potentially provide a lot of useful information for guiding my future treatment and the particular method they use is one that can give very accurate results.  They are actually going to test 3 samples of my tumor; from my mastectomy in 2009, my liver biopsy in 2012, and a liver biopsy that I’ll get soon.  The idea is that genetic mutations may have occurred since my original diagnosis in 2009, so studying them can provide insight into how tumors adapt to chemotherapy. 

The Dr said they are waiting for some legal papers to get approved before I can officially sign up.  If the lawyers take too long she will just order the tests for me off trial.  The testing company has agreed not to “balance bill” which means they will take whatever payment (if any) they get from insurance and not send me a bill for the rest. 🙂

Tomorrow I go for chemo and work on getting the liver biopsy scheduled.

 

Retirement Party December 9, 2013

Filed under: Uncategorized — onbeyondcancer @ 5:44 pm

Still waiting to hear the official news on my retirement date later this week, but my coworkers threw a lovely early retirement party for me last Monday.  We had appetizers (all vegetarian) and cake at a coworkers house.  Lots of mingling.  They got me gift certificates for different fun activities I can do when I retire like go to the movies, read books on my Kindle, get a massage, and take the kids to laser tag or Build A Bear.  They also gave me a plaque and made a scrapbook for me.  It felt a little strange to have a retirement party and then go to work the next day, but that’s how life works sometimes.

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Here’s my cake.

 

Enjoying some appetizers.

Enjoying some appetizers.

My boss (in the red sweater vest) giving a speech before presenting the plaque.

My boss (in the red sweater vest) giving a speech before presenting the plaque.

 

 

 

Taking a quick look at the scrapbook; I waited to read it until I got home so I didn't cry.

Taking a quick look at the scrapbook; I waited to read it until I got home so I didn’t cry.

 

 

All I want for Christmas is a genomic analysis December 6, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:18 pm

I mentioned in my last post that I’ve been working on getting genomic or DNA testing on a sample of my tumor.The idea is to find what mutations or abnormalities that the cancer cells have and match them to drugs that specifically target the mutations.

My doctor recommended a particular analysis offered by a company called Foundation Medicine. I’ve had a hard time finding out whether my insurance will pay for the testing or deny it because they consider it experimental. The test costs $6000, so I really would rather not have the test without knowing if it will be covered. Dr T happened to talk with someone at the Cancer Institute of NJ and found out they were doing the testing as part of a clinical trial. A coworker did some research for me to find out which Dr was running the trial and I left a message for her. She called me tonight and said that she thought I would be eligible for the trial. I have an appointment with her on Tuesday!!

I am super excited about this and I am sure that seems crazy. Since I found out the test might not be covered by insurance I have been really stressed about it. By participating in the trial I’ll get the testing done for free. When the results come back they will be reviewed by a panel of experts who will make recommendations for me for future treatment, basing their suggestions on the test results, previous treatment I’ve received, and what drugs are available either to the general public or through a clinical trial. Their suggestions would be sent to Dr. T and she would continue as my primary oncologist. I love the idea of getting a high tech consultation but having Dr T manage my care.

As a side note, my tumor markers are stable (94.1) and my liver enzymes are greatly improved compared to last month. So lots of good news tonight!

 

Retirement December 5, 2013

Filed under: Uncategorized — onbeyondcancer @ 11:05 am
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Good morning!  Sorry I’ve been a bit busy lately and haven’t had a chance to post much.  I had chemo and a doctor visit yesterday; everything went fine.  We are still working out the details of the genomic testing, but more about that another time.

In October I decided to apply for disability retirement.  I’m part of a pension system at work that will pay me a portion of my salary as well as allow us to keep our health benefits for a reasonable, non-COBRA rate.  Please don’t be alarmed – nothing has drastically changed for me healthwise.  Technically, I’ve been “disabled” since my stage 4 diagnosis in April 2012, but I’ve continued to work because I like to and it keeps my mind active and busy.  I also wasn’t sure how we would get health insurance.

Since my stage 4 diagnosis, I’ve had  a number of little health issues come up.  Each one taken separately is no big deal, but they add up to be a bit challenging.  For example, I sometimes have trouble getting my thoughts together and I am completely unable to focus with any background noise or conversations.  Probably I’m the only one who notices.  Also the 2nd round of radiation seems to have caused some permanent damage to the muscles around my right hip, so I have to use my arms to lift up my leg to do things like put on my sock or get in the driver’s side of the car.    I’ve mostly adjusted to these kinds of things, but the start of IV chemo brought on new challenges of fatigue and a poorly functioning immune system.  I started to feel like I was pushing myself too hard and not having much energy left over to devote to the kids.  All of these things together led me to start seriously looking into disability retirement.

I made some calls and did some online research and Mike crunched the numbers on our finances.  I learned that the four of us could keep our health insurance by paying a small portion of my pension check, so my retirement wouldn’t be a problem for us financially.  That was a huge relief.  But I really decided to go forward with it when I read that the approval process could take up to 8 months!  Yikes!

I put in my application expecting I would keep working until next summer, but somehow the paperwork went through quickly.  This is the state government we are talking about here, so I was shocked.  Anyhow, I’ll get a final answer next week, and if all goes well my last day of work will be January 30.