PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Friday, September 23, 2011

David Haas- Guest Post!

Hi all! I was recently contacted by David Haas who showed interest in sharing an article with readers of my blog. I think it's a wonderful article and very true! Hope you enjoy! :)

Groups Help Increase Hope

Cancer Support Groups

It is at their lowest point, their darkest time, that humans find they need the most support. Those who have suffered through or are currently suffering from the effects of cancer and cancer treatments find these low points more often than any one person can bear. Cancer patients and those in remission need the support of their friends and family. For those who think they must face this trial alone, many support groups are available to offer support and a place to share concerns and hope with other cancer patients and survivors.

According to the Cancer Society of America,
supports groups can greatly enhance the cancer patient’s overall quality of life, but the opinion of the scientific community as to the long term health benefits of support groups is mixed. Support groups help cancer patients in many ways. Their primary goal is to help patients dealing with cancer with their immediate issues rather than long-term problems.

They use a variety of methods to accomplish this goal. Support groups can use the group interaction to allow cancer patients and survivors to share their stories, concerns, and information about how to best cope with certain treatments.  This serves to relieve any feelings of isolation that can lead to depression. Depression decreases the chances of recovery. Support Groups help gain information one needs to help battle the cancer from people who are going through the same thing or have already gone through it.

Cancer groups are often separated by the type of cancer that is afflicting the patient. Women with
breast cancer would find they have little in common with a Vietnam veteran suffering from Mesothelioma. Each type of cancer affects the afflicted in a different way. Cancer attacks the body and is often concentrated in particular areas of the body such as the breasts, testicles, lungs, or brain. It is very beneficial for patients to receive informative knowledge about how to best cope with the exact treatment they are going through from people who are going through it also or have gone through it in the past.

The scientific community offers conflicting opinions on the efficacy of support groups in terms of long-term cancer survival. Studies have shown that those who regularly attend support groups live longer than those that do not. Other studies have shown that support groups have no measurable effect on the cancer survival rates. Each of these conclusions may be true, but that does not matter. The
doctor who refers their patient to a support group is not hoping that they will achieve a spontaneous remission. They are encouraging their patient to seek the support. They realize that cancer recovery is a long journey, and that the patient will need all the support they can find.

Those who suffer from cancer must depend on their support system, but they often feel as if they are a burden to their friends and family. Support groups offer a place where their fears and concerns will be met with support and hopeful optimism. Such support can only help with a patient’s chances for recovery.

By: David Haas

-- David Haas
Mesothelioma Cancer Alliance Guest Blogger -
Personal Blog -

Tuesday, September 20, 2011

Catch up!

Ok, I admit it...I've been HORRIBLE about updating!  I started school and in addition to that and working full time it takes up ALL of my time. The time that I'm not working or studying I'm normally eating or sleeping.. I get the occasional play time but let me tell you, I'm exhausted when I hit the bed at night! I still take muscle relaxers and/or a pain pill to help me sleep. Hopefully, I can stop doing that soon as that may be contributing to some of my fatigue through out the day.

Well, I finally got my drain pulled this past Wednesday. Thank goodness! However...I'm still draining out of that hole...eww I know. I have to keep a bandage on it and I'm taking care to make sure it's clean. She gave me another fill of over 200 cc's when I had my drain pulled. She actually filled me BEFORE I had the drain pulled and that definitely added to the ickiness feeling when the drain was pulled! I literally felt it push on the tissue expander and she had to pull a little harder to get it out.

She wanted to see me today, to make sure there wasn't a seroma forming from where she pulled the drain. Since I'm still draining from the hole, the bright side was that I didn't have a seroma! So yay? I also got another fill soooo.......(drumroll please) I'm now even and full on both sides. YAY! A total of 910 ccs on both, even though she said at the exchange surgery that there may be a slight difference because of the difference in the skin on the right side.

One thing that was SLIGHTLY concerning was the slight patch of pink on my right foob. I dismissed it as a bruise because a) it wasn't warm, b) it looked different than before and c) it didn't have fluid build up. She said I was more than likely right and she wasn't too concerned, but she'd put me on another round of antibiotics to be on the safe side. When she got a nurse's opinion who'd be dealing with mastectomy patients for 20 years, she said that it was fine. She said that a lot of patients are entirely pink throughout the whole process and it's just the tissue's way of reacting. So cross your fingers and your toes, pray, light a candle, dance naked in the moonlight (HA I stole that from a Facebook friend), make a sacrifice, whatever you have to do that it's nothing! I have another appointment with my PS next week and I'm hoping it'll be smooth sailing from there.

Well that about sums up the excitement in my life here lately! My next post is actually going to be a guest stay tuned for that excitement ;)

Have a WONDERFUL week!

Wednesday, September 7, 2011

Blessing in Disguise

First of all, let me start off by saying I still have one drain. No, really that's NOT a joke. It's still here...holding on for dear life, still draining away. The original plan was to leave it over the holiday weekend and hopefully it would be through early this week. I saw that it wasn't letting up anytime soon, so I bit the bullet and called my doctor. I told her it still wasn't letting up and asked her if she wanted me on anymore antibiotics. I REALLY don't want to take the chance of another infection. 1- if I don't get my foobs by the end of the year I'll probably DIE and 2- they told me my last infection was low grade MRSA...serious stuff. They hammer the danger of MRSA into you at school, so I didn't want any more of that nasty business. She told me to run up to the office, and she'd give me a fill (an unorthodox thing to do with the drain still in, but not really a taboo thing to do- just not the norm) which would hopefully fill the space that the fluid was trying to build up in. She also gave me a prescription for more antibiotics and some pain pills (I swear I'm turning into a junkie). My PS is pretty laid back when it comes to fills. She prepares to do 100-150 ccs each time, but she'll stop whenever you say stop. She filled the first 100 ccs and asked if I was feeling any tightness. I told her no, and she said she'd go for another 100, but to stop her if I started to feel anything. When she was done with that, she had me sit up and asked me if I felt anything. When I told her no she says "Welll I can try to put in another 50 ccs if you want." I told her to go ahead, and she made me promise to tell her the second I had any pain. Which, oddly enough I didn't. I had a fill of 250 ccs at one time...and I still have yet to really feel anything! I'm almost a little nervous...hope I'm not in too much pain later....

I had to work as soon as I got in from the doctor. Since I've started working from home, taking insurance claims, I've heard lots of crazy stories! I've talked to all sorts of people's been pretty interesting. One call today really stuck with me....the caller was a younger sounding man (he was in his 40s, I later found out) and he said he needed to file a Leave Request (FMLA). I started the claim, asking him probing questions to find out the specifics of the request. He said that his wife had recently passed away (about 10 days ago) and he needed to take intermittent leave to help take care of his kids. He said he was extremely stressed out about this...he has two small children and no one around to help take care of them. He then went on to tell me that his wife had died of breast cancer...after a long, two year battle. His voice started to break when he asked if I knew if he'd get into trouble for missing work. He said he's having to try to find a sitter for his kids, because they have no family around. I was almost in tears as I took his claim...he sounded so helpless! He couldn't even really take the time to grieve for his wife, because he needed to take care of the kids. Then I realized that the kids would have to grow up without their mother, and I almost lost it. I told him that I was very sorry for his loss (duh! the most stereotypical thing to say) and that I sincerely hoped things worked out for him.. being raised a Southern and a Baptist I was about two breaths away from offering to cook for him (When someone dies- I feel like the grieving family needs food. Either a casserole or fried chicken!)

When I hung up the phone, I realized how easily that could have been me. Had genetic testing not been so common, so readily available,  I would have never known that I have Cowden's syndrome. Had my neurosurgeon not had the idea that I needed to get tested for Cowden's in the first place, orh ad I not had a brain tumor in the first place I would have never known about my high risk for breast cancer. I had so many near-miss scares, that one of them could have EASILY been the big C diagnosis, had I not known to monitor it so carefully. I mean what person in their 20s even thinks to have a mammogram?? There's a girl in the area, who was about my age when she died, who went to the doctor about a lump she found in her breast. The doctor dismissed it, told her it was nothing, and sent her on her way. It persisted, and when it was finally tested, it was stage 4 breast cancer and she later died. So many people have died so early, and I could have easily been one, had I not known about my genetic risk.

I say all of that to say this....while what I'm going through SUCKS (no doubt about that) it could be worse. I don't have to fight a two year battle with breast cancer, I don't have to go through chemo or radiation and then eventually end up having a mastectomy anyway. I guess I'm realizing that it's a blessing in disguise.

No one's getting rid of me that easily :)

***AUTHORS DISCLAIMER: Even though I've come to this epiphany, that doesn't mean that I still don't know that my situation sucks a big one. I reserve the right to still complain would complain to if you had a tube with bodily fluid draining into it hanging from your armpit****

Friday, September 2, 2011


I just tend to automatically assume that EVERYONE has a Facebook page these days. Its what all the cool kids are doing now, right? Well, even if you haven't been on Facebook, I am sure youve heard about the games to raise breast cancer awareness. First, the baffling color statuses (the color of your bra) and then the sexually suggestive, "I like it on the _______" (referring to the location of your purse) and now the pregnancy statuses (Im ___ weeks and craving ____ based on your birthday) Naturally, since all of these are to "raise breast cancer awareness" I received several messages about each "game". I obliged, participating in each but not really knowing exactly how I was raising breast cancer awareness. I mean I am aware of breast cancer for sure....there's not a day that goes by that I don't think about it. But, how exactly was I making others aware? That I wasn't sure of, but I figured no harm, no foul and posted the statuses anyway. WRONG! A friend posted a link to this blog, imploring others to read it. I am going to post the same link, and ask that you read it with a open mind. With October fast approaching, there will be loads of breast cancer awareness. And while I know that this has become my cause, whether I want it or not, I'm sure if we all put our heads together, we can raise awareness the RIGHT way and not potentially offend someone else in the process.

CG Ward Photography