Wednesday, July 31, 2013

Survivor's Blog July 31, 2013: Article by Erin Dempsey...

Hello Everyone-

I thought I would take a break today since chemo yesterday made me pretty sick. As I write this I am again hooked to an IV pole at SCOA. Today I will let someone else do the writing.

This is an article written by my Sister, Erin Dempsey.  She and her daughter, Courtney, have been helping out with my cancer care since my diagnosis in June 2011. I am not sure how Oscar and I would have survived all of the ups and downs of cancer without their help. As you will see , I have been very blessed by the people I have around me.. Courtney and Erin rock!!!

As with all my other guest blog posters, I asked Erin to talk a bit about how all this affected her? I also asked her what she thought was the most helpful thing she was able to do for the cancer patient she was a caregiver for , in this case me?


Just in case you don't know, I never edit or change guest blog posts in any way!

Here is what she wrote:




 
How To Help a Family Member with Cancer

 My Sister Tara asked me to provide a contribution to her blog about how to help a family member with cancer.

Hmmm, where do you even start with that one?  Well, I guess we can start with the obvious…

a)    Hear diagnosis and have a ton of bricks fall on your head

b)    Make a lame attempt at absorbing the shock and not saying something stupid

c)     Immediately conjure up the thought of curing cancer yourself – right now.  How do you translate all that marketing experience with computer companies the last 25 years into immediate and earth shattering results in the lab? Maybe…?? NOT!!

d)    GET REAL ABOUT HERE AND NOW

If you have been following Tara’s blog, I don’t need to remind you of how this all went down and I will work to stay on point with simple ideas that seemed to help her and may possibly help someone else going through this battle.

After you have had a minute to experience that initial, immediate and overwhelming sense of helplessness that happens when you hear about a loved one having cancer, try to start to think about the small and everyday things that appear to be super simple …

UHHHH unless you feel like CRAP because you have CANCER!

That is where I started my thought process – since she is dealing with all this, what can be taken off her plate to make all that other stuff easier to handle?

My first thought (probably still in “shock” land) was – how do we keep weight on her while she is going through this?  Many have seen and understood that the disease takes a toll on weight, not to mention the process to try and rid someone of that disease. Tara said she did not have the energy to cook, and many of the smells a lot of foods were putting off made her want to barf!

Take action – don’t sit around. Not only does this keep your racing mind occupied, but you are actually getting something done that could make a difference!  This may vary from person to person depending on his/her needs.  In Tara’s case, I took my butt to the kitchen and decided to whip up some of my specialties I thought she might like, or at the very least could pick and choose from – eliminating the need for cooking while she was dealing with a crazy routine of medical appointments, hospital and chemo visits.  The ironic and hysterical part about this action was that I have been listening to her husband make jokes about my cooking for 14 years (as in, I suck at it).  Nevertheless, I was determined not to poison her more than the cancer.  I packed everything up in easy single serving meals and hauled it over…

Long story short, she was able to eat some of the things I brought and no cooking was needed.  It got them through a week or so straight out of the hospital.  Just one less thing.

Advocacy is a big deal.  It turns out that when people get slammed with life-threatening news, it is a lot to take in...??!!  If you can, try to be there to listen to the doctors and nurses.  Take notes and ASK QUESTIONS.  I don’t care if they look at you like you are from Mars – make sure you understand the information being imparted.  Your family member with cancer is generally in pain, totally overwhelmed by the information being given from all different directions and having a hard time navigating the medical system – insurance issues and otherwise. It’s not called “Chemo Brain” for nothing!  Do not take for granted that the patient will retain information given them or that any nurse or doctor walking in that room knows who she/he is, what exactly is needed, etc.  Those folks are human and can be capable of human error just like anyone else.  Additionally, make sure the patient and those they trust believe that the medical team surrounding them is the best one for the job.  The patient is the customer, and THE CUSTOMER IS ALWAYS RIGHT.  If something makes you uncomfortable, doesn’t sit right, or feels just plain wrong – question it, change it, do whatever it takes to get your loved one informed and comfortable with who is treating them.

Check on the other ones.  You are probably not the only one having a hard time coping, feeling helpless or overwhelmed.  There are others that may be too and need to be heard and helped if needed.  Take the time to ask them how they are doing and listen.  You may find an outlet or source of support in the meantime.  At the very least, you can find ways to collaborate on things that might help the one dealing with being poked and prodded on a regular basis. 

Here’s something a little more personal but works for me… I am not a girl to blow smoke up people’s butts, and that isn’t going to start because you have cancer, but I DO truly believe that one day should be taken at a time.  Staying positive and keeping it real has worked well for us.  Dealing with here and now seems to make the most sense.  Jump over one hurdle before you start freaking out about the next.  Do your best to talk your loved one off the fence when you see them starting to “spin”.  Be a good anchor!

What I have discovered over the last two years is that there are ways to help that do matter and can make a difference.  Finding a complete cure for cancer would be awesome, but dealing with immediate needs seems to make the most real sense for those of us that aren’t rocket scientists. 

Lastly – never miss the opportunity to tell someone you love them.  Tara and I came from a fractured family that didn’t do that and one of the coolest things that came out of that was wanting to be there for each other and not missing those opportunities – cancer be damned.  We just roll like that!
 
 
Erin and I as children in California!




Sunday, July 28, 2013

Survivor's Blog: June 28, 2013- Want to feel better, go jump in the lake!!!!




Some days you just have to do something for yourself! With all the rules the Doctor's and Nurses have given me when I am on chemo it is a wonder I can leave the house. I am not supposed to be out in the sun , sit by sunny windows, get too tired, or be out around the public. If I listed all the rules here, I am not left with much I can do. My policy so far has been to use common sense and do my best to stick to the rules where I can. I am still out working with the public ( which irks my Doctor). I feel like I need to get out and see people or I will lose my mind sitting at home!!!
 
 
 A couple of days ago my Niece, Courtney,  and I made a run to 14 Carat in Lexington, SC for some organic healthy stuff we can't get at Publix. Lake Murray looked so inviting that we decided to stop in at the park on our way home and get our feet wet!  Jumping in the lake may not be on the Doctor's list but, we sure had fun!!!!!

The moral is sometimes you just have to go ahead and have some fun, it will make you feel better....

Thursday, July 25, 2013

Article by David - A fellow cancer survivor.....

In today's article, my good friend, David A. talks about what his friends did to help him when he had cancer. David is  an incredible photographer. We met in 2011 when we were both recovering from cancer, he was interviewing and photographing cancer patients for a book he is writing on surviving cancer.

If you would like to check out his work go to:

http://www.asiamahphotography.com/

Here is what David writes about what helped him most when he was in cancer treatment:


Sitting and Doing Stuff: What my friends did that helped me cope with The Suck

 

I can start by saying that in reflecting back I may be attributing some meaning to aspects of my experience that may not have been true in the moment.  I know I needed more than anything a sense of normalcy and those privy to my experience at the time conscious or not or perhaps because I requested it, provided as much.   If I can simplify the value of the experience with my friends I would place the helpful experiences in two categories, sitting and doing stuff.

 

Treatment was boring.  Sitting for five-six hours with God knows what being pumped into your body offered perhaps a chance to be reflective but I appreciated the company most of the time.  I was selective about who came because very few could sit there without the compulsory sad face to go with it.  Most conversations were about work or what I was reading at the time.  My friend Greg offered an endless supply of graphic novels to help me pass the time.  Sometimes it was the morbid outlook of some of the people around me.  Sometimes I would sleep through the visits.  I remember that I found some comfort in another’s (David S.) teenaged experience with the same type of cancer.  Another friend Gelila would come hang out with me every Sunday evening during the week of treatment (The Suck) and watch animation domination.  As much as I hated her asking if I needed anything every five seconds I came to recognize that she gave me something to look forward to.  It was an opportunity to hang out and I was more inclined to focus on her company than how I was going to be feeling.

 

When it came to doing stuff, Clark was my enabler.   Clark would pick me up (driving seemed to make the nausea worse) on a few of my really horrible days to attend parties and offer opportunities to chase women I had no business or real interest in chasing.  I was stubborn enough to fake my way through most events without anyone catching on and the one or two observant folks who did so were easily thrown off with some nonsensical excuse they rarely if ever chose to press further. 

           

Above all else, my experience showed me how much I valued my ability to create.  Having friends attend shoots as assistants was helpful.  I came to appreciate the little things like the offer to carry my pack.  Sometimes they got in the way of the work but the fact that they made it possible for me to be out there creating was a blessing.  There were some ill-advised beach and mountain trips (Edisto and Asheville, respectively) that I found incredibly refreshing if only for the change in scenery and the opportunities to create somewhere else.  The way I saw it, I could feel crappy at home on the sofa or I could feel crappy doing something fun some place else.  The some place else offered a number of things, the most important being the opportunity to get to know someone a bit better than for some reason other opportunities had failed to provide.  There was never a question at least that I can remember of whether I felt up to doing something.  It was usually “hey, you know what would be really cool?”…And away we went.   

Tuesday, July 23, 2013

Survivor's Blog- July 23, 2013: Update on my treatment ...

Today I am just going to post an update on my current treatment. Went in to see the Dr. this afternoon and they are pleased with how the last cycle of chemo went. My blood work is looking good and so is everything else. So, I start a new cycle of treatment next week. At the end of the 3 week cycle they will be running a Pet Scan and blood work to see if I need to continue treatment.


Dr. Smith mentioned at past appointments that if I looked good after 3 months of treatment that I would be done with chemo for now. Today Dr. Smith was off and  Dr. Merrit saw me. He mentioned to me that no one ever is done with Topetecan Chemo after three months. According to him, that particular treatment takes at least six cycles to complete. As soon as Dr. Smith comes back I am going to ask him about this?  He has been known in the past to sort of spring this stuff on me so that I won't argue with him or tell him NO!

If you are following what is going on with my fight with cancer. Please be aware that he may tell me next month that I need to stay on chemo .. and I may refuse further treatment for now! They have been injecting me with poison ( chemo) on and off for 2 years now . I feel my body needs a chemo free break to heal a bit!!!! If I refuse, it is not because I have a death wish or do not want to get well. It just means that I need a break!!!! I watch very closely what happens with the other patients I meet during treatment, and I fully believe that sometimes the chemo does more harm that good and shortens patients lives. As to whether my Dr. sees it that way?????
Zapata and Coaly- helping me to get healed!!!!

Anyway, today went as well as can be expected.....

Since they made me so sick doing a port draw today, I am going to bed. As you can see from the photo, I have some very good nurses to assist me in my "resting"


Monday, July 22, 2013

Lindsey Graham, US. Senator ( SC) Responds to my email about Ovarian Cancer.....

If you have been following this blog,  you know that while I was in chemo treatment last week I sent my Senator, Lindsey Graham, a form letter blocked out by the Ovarian Cancer Alliance.  The email asked the Senator to:


·         Recognize September as Ovarian Cancer Awareness Month

·         Support appropriations of $20 million for the Ovarian Cancer Research Program in Fiscal Year 2014

·         Co-Sponsor the Cancer Drug Coverage Parity Act (HR 1801) or become a sponsor of the Senate bill when introduced
 
I also personalized the letter and asked that SC come in line with some of the more liberal states in our country and legalize marijuana for medicinal purposes. Synthetic THC made such a difference in my health when I was first diagnosed with cancer, legalized medical marijuana would help thousands of SC residents.
 
When I sent the email, I truly never expected to hear another word about my email. Today, I received Senator Graham's written reply to my email assuring me that he would keep my comments in mind when the Ovarian Cancer legislation came around in 2014.
 
 
Senator Graham, I would like to personally thank you and your office for taking time to respond to my request. As a Californian born and raised, you have no idea how unusual it is to have a public official respond to a request made by a constituent.
 
If you would like to urge your senator to help Cancer patients in your  state go ahead and send them a letter. If you would like to use the form set up by the Ovarian Cancer Alliance follow this link:
 
 
If you are in SC and you would like to contact Senator Graham about Ovarian Cancer, his blog address is http://www.lgraham.senate.gov/public/
 
 
 
 
       
 
 

Sunday, July 21, 2013

Please Participate in this Cancer Prevention Study!!!! Help find a cure for cancer!

I am posting this one more time in hopes that all of you that are eligible will sign up for this study with the American Cancer Society. (Particularly if you are related to someone with cancer!!!!) If you  have never had cancer - this is something you can do to help! Dedicate your participation to someone you know who is affected by cancer.


 Go to this and participate in this simple research survey. Just click on this

link:http://www.cancer.org/research/researchtopreventcancer/participate-cancer-prevention-3


Thursday, July 18, 2013

Survivor's Blog- July 18, 2013 A little boost to get me down the road....

Yesterday, I got the nicest surprise- it was the kind of surprise that boosted my spirits and should help me make it through the next few weeks of treatment! As many of you know, I have been having a hard time as a cancer patient this time around. My body is very tired of all the therapies. Emotionally, I am tired of practically living at the SC. Oncology Associates Office. I try every day to remember to be grateful for what I have and look forward to when I will be through with all of this and cancer free. Sometimes staying upbeat is really hard.. so what happened to me yesterday was wonderful!

As many of you know, I have continued to work despite my doctor's wishes. I have also tried to keep up with some of my other interests as I am able to. One of the things I love  most is gardening. When I was diagnosed with cancer in 2011 and became sidelined I was not able to garden much, which has been hard for me. I was in chemo treatment one day checking my email, when an invitation to take the South Carolina Master Gardener's class at Clemson popped into my inbox. I remember opening it and saying to Erin, "I always wanted to take this class,  it is ironic that now that I am off work and have the time, I can't take it because I am on chemo." My chemo nurse, Kathy, overheard us talking and told me that they actually had a patient take and pass the class last year. She told me to sign up for class and go for it. So I did.

Beginning in 2012, I started the three months of weekly classes that it took to be a Master Gardener. I also started to do volunteer work around town so that I would have the 40 hours required to be a Certified Master Gardener. I was so excited to get a great grade on the Master Gardener final and I worked really hard toward my volunteer hours. Then for some inexplicable reason I started to get sick again, and I had to start chemo all over again. The second time around wiped me out and I was unable to finish the gardener's certification on  schedule. My classmates all received their certificates at a gala this June-- while I stayed home and dealt with the big C.

Yesterday, the Master Gardeners had their annual Tomato Tasting and meeting at Saluda Shoals Park. They invited me to come and even offered to come pick me up if I did not feel up to driving myself. I decided since I had to have treatment yesterday anyway, I would just swing by the park on my way home and sit in on as much of the meeting as I could. We had a wonderful lunch and it was so  cool to see many of my friends from class!

The best part of the day for me though was the surprise they had planned for me..they called me up to the front of the room and Certified me as a SC Master Gardener!!!
Myself and Vicky B.
 
Photo taken by Clinton Bryson
 
 
 

Wednesday, July 17, 2013

Ovarian Cancer Alliance- Open Letter to your Senator

Hi Everybody,

The Ovarian Cancer National Alliance is trying to encourage our government officials to take Ovarian Cancer seriously.  Please read the message below and encourage our elected officials to take action!


banner with logo, white background


 

Help us take a message about ovarian cancer to the halls of Congress!

 


Dear friend: 
 
There is no known cause of ovarian cancer and no reliable early detection test.
 
Today a group of advocates will meet with their elected officials in the House of Representatives and the Senate to discuss issues important to the ovarian cancer community. If you aren't on the Hill with us in person, join us virtually and stand up for ovarian cancer survivors in your community. We need your voice to ensure that Congress makes progress addressing the needs of our community--your elected officials need to hear from you! Taking action is easy and only takes one minute!
 
For the 22,000 women who will be diagnosed with ovarian cancer in 2013--and 183,000 women living with the disease--please join us in asking our elected officials to:
  • Recognize September as Ovarian Cancer Awareness Month
  • Support appropriations of $20 million for the Ovarian Cancer Research Program in Fiscal Year 2014
  • Co-Sponsor the Cancer Drug Coverage Parity Act (HR 1801) or become a sponsor of the Senate bill when introduced
It is as easy as sending an email!
 
Click the Take Action button to send an e-mail to your elected officials today. Please remember to take action on both alerts at the link--we have separate messages to send to your representative and senators
 
Take Action button 
 

Tuesday, July 16, 2013

Article by a new friend.. Cameron Von St. James

As many of you know, my original intention with this blog was to present helpful tips for Ovarian Cancer patients in two forms; simple tips written and tested by me, and articles written by folks who have gone through this with family members of friends. This article came to me in the most wonderful way, it is written by someone who was out searching the web and stumbled across my blog. He emailed me and wanted to share the inspiring story of his wife, who is a cancer survivor just like me!

This post is written by Cameron Von St. James, he is the husband of Mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36.  A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease.  They hope that by sharing their story, they can bring hope and inspiration to people with all forms of cancer. They live in Roseville, MN with their daughter Lily.  Cameron is now a systems analyst at U.S. Bank.

Please keep in mind as you read posts from guest writers that I do not edit or change anything they have sent me. I ask survivors to write about what simple things most helped them during their illness. I ask friends and family to let us know what one thing were they able to do that helped their friend or loved one most during their illness?

Here is what Cameron has written for you to enjoy:



Determination: The Key to Surviving as a Caregiver

On November 21, 2005, only three months after the birth of our only child Lily, my wife Heather was diagnosed with malignant pleural mesothelioma. On that day, I instantly became the caregiver for a cancer patient. Instead of joyfully preparing for Lily’s first Christmas, we were suddenly plunged into a life of chaos.

The responsibilities of a caregiver hit me hard on the very day that my wife received her mesothelioma diagnosis. After the doctor uttered those fateful words, he explained to us a little about mesothelioma and available treatments. No experts in mesothelioma were available locally, although some excellent cancer-care facilities were in the region. In Boston, however, there was a specialist in mesothelioma treatment. My wife, Heather, sat staring at the doctor, her face pleading for someone to help her. I blurted out, “Get us to Boston!”

In the coming weeks, our routines were completely shattered. Heather had to quit working, and I was only able to work part time while also transporting her to treatments, arranging care for Lily and making plans for our trip to Boston. Meanwhile, my fears of facing life without Heather grew. At times, all I could do was lie on the kitchen floor and sob, but I never let Heather see my distress. I needed to be her rock through this ordeal.

When things seemed completely unmanageable, help from family, friends and strangers would come to see us through. During this time, one of the biggest lessons I learned was to accept help whenever it was offered. Without this help, I would never have made it through this difficult time.  Take it from me – there is no room for pride in a battle with cancer. 

It took years for our lives to return to normal after Heather’s fight with cancer. Despite all odds, after mesothelioma surgery, chemotherapy and radiation, she emerged victorious. Now, seven years later, she is still cancer-free. As a result of this ordeal, I have learned that my stubborn nature can be an advantage to help me get done those things that need to be accomplished.

After having learned a lot about time management and perseverance, I returned to school in information technology to fulfill my dream of earning a college degree. Five years following my wife’s cancer diagnosis, I graduated with high honors. In my speech on graduation day, I encouraged others to never give up hope. With a healthy dose of determination and courage, anything is possible.  Now, we hope that by sharing our story, we can help others currently in their own battles with cancer today.

Thursday, July 11, 2013

Survivor's Blog- July 11, 2013 Quick update on my chemotherapy and treatment..

Hi Everybody,

First of all, I would like to thank all of you for bearing with me as I go through this most recent set of chemo treatments. I know I promised you daily ( or close to daily) blog articles but, I have to bow the wishes of my body lately. This is why I also have not been calling many of you as much.. even talking wipes me out lately. I started chemo in January of 2013 and six months into treatment I am so exhausted that I spend a great deal of my time sleeping. If I can't sleep due to the steroids, then I am just resting.

The sleep allows me to accomplish just a few things each week. I can teach two or three simple two- hour classes at Michael's, so that I get a little bit of socializing in each week ( as a bonus I get paid). I can also make sure to do my couponing and keep the house stocked with groceries. I have to admit that lately I am using the handicapped scooter to do my shopping. I will warn any of you who live in my neighborhood and shop at Publix, I am the worst scooter driver in the world----WATCH OUT!!!!!! Finally, if I plan my time well I am still cooking a few simple dinners a week. So for those of you worried about Oscar, he is still being fed!

I just finished up my first three week round of chemotherapy using Topetecan. The results so far have been positive. For the first time in months, I did NOT have an allergic reaction to the chemo. This means this is a drug I can stay on for now. The second bit of good news is this: my CA125 blood levels have dropped significantly for the first time in months. My CA125 number is now 70. This is great news! It means that if I can finish the next two three-week cycles of Topetecan and the Pet scan that follows is clear, I will be off chemo for good. So wish me luck, and keep me in your thoughts and prayers. I have one week left in my second Topetecan cycle and then one final three week cycle after that- -if all goes well my last chemo treatment will happen on August 19th!!!

The other bit of stellar news we have had around here is that Coaly our beloved doggie is OK! Those of you here in town know that he had either a stroke or a seizure about 10 days ago. The vet could find no reason for the incident and he seems to be just fine now. So we are feeling very blessed that he is OK!!!

Hopefully, each week will be a little easier from now on......