Wednesday, March 30, 2011

national social workers month

I just found out march is national social workers month. Well, the month is almost over but never too late to recognize all the great social workers out there! My baby sis is a sw that works with teens in a high school. I think most of us can imagine how tough a job that is as well as how needed it is. I took advantage of the breast cancer sw at the big cancer house when I first started this ordeal. Let me tell you again how much it helped. We had a sw at the nursing home I trained at to get my nursing assistant certificate. If anyone could use a social worker, it is the elderly! They are dealing with so many issues: financial, death and dying, loneliness, health, physical and mental changes...

I have to admit that before I saw a social worker myself, I didn't really know what exactly they did! Here is a good explanation (below) that I've copied and pasted from the livestrong blog:

by Guest
It’s National Social Worker’s Month! Social workers improve the quality of health care by being advocates for people who need help addressing serious life challenges and exploring options. Below is a note written by the President-Elect of the Association of Oncology Social Workers.
“I wish I had known you were here sooner.” That was an oft heard heartbreaking message I heard from patients and family members as an Oncology Social Worker. Here is the deal: (start eerie music..) Oncology Social Work is shrouded in mystery in many cancer treatment centers. I could have neon posters, flyers and brochures promoting Oncology Social Work (OSW) services and they were too easily passed over for the medical information available in a resource room. That was my rude awakening when I was lucky to score a full-time job in a physician practice in Austin in the late 1980′s. Cancer treatment was just moving out of inpatient settings for many patients, and physicians discovered the need to have a Social Worker on site to address the issues that often fall through the cracks in a medical setting. I quickly developed a lot of humility recognizing that people were not at the oncology clinic to visit me! The much more urgent medical needs trumped my offerings for good reason.
Who needs an OSW, anyway?
At the risk of academic boredom, Social Work theory views a person within the multiple systems that define their lives. We view a person’s constitution as a result of their communities, homes, families, schools, spirituality, job status, financial situations, friends, etc. When making an assessment, a SW cannot separate a person from his/her environment. This is the most important distinction one can make about how a social worker can be of help in a medical setting. Cancer can devastate one’s life upon diagnosis. Even if a person is feeling well, most of the treatments they will undergo will create challenges in their day to day lives. There are significant emotional reactions as well, for a patient and their loved one. There are practical concerns like managing to continue in ones role prior to diagnosis: Will I be able to work? Will I be able to take care of my children? Will I be able to stay in school? How will my family cope with my illness? How will my illness affect my financial situation? Will I be disabled? Will I be disfigured? Am I eligible for any support services? What if I cannot drive myself to treatment? What if I have no insurance? Should I apply for disability? Will my doctor discontinue treatment if I cannot pay? These are concerns that can be addressed by an OSW. As well, a good part of my practice is spending time with caregivers and loved ones of patients. Matter of fact, there was a consensus among the couples I worked with that posited that the cancer experience is harder on the caregiver/loved one than it is on the patient.
Can we talk about that Elephant in the Room?
“I am not satisfied with my doctor but I am afraid if I change doctors he/she will be mad.” “I intend to live to 100, but just in case, can we talk about what my disease will be like at the end?” “I want to create a legacy project for my infant daughter, should I not survive.” “My sex drive is on a road trip somewhere, how can I get it back?” “I am so exhausted, I am thinking of quitting treatment.” “Would you help me write my will and get power of attorney documents?” “My friends say I look great since finishing treatment…. Why don’t I feel so great?” Oncology Social Workers are counselors. Most have a master’s degree in Social Work and a tremendous amount of expertise in therapy and counseling. Due to heavy caseloads, most OSW’s focus on brief format counseling and group work which is most compatible with people with cancer. The shock, anxiety, fear and grieving can be addressed by an OSW. Should more significant needs arise, your social worker can refer you to a professional in the community. Good news is that most OSW’s salaries are covered by the physician practice so there are no charges for OSW services.
Get a hug- Give a hug!
March is Oncology Social Work Month! I hope you learned something helpful, and I appreciate the opportunity to toot the OSW horn in this blog! Oncology Social Workers are also available at LIVESTRONG, via the helpline 1-855-220-7777, online and the new Patient Navigation Center in Austin.
Ann Fairchild, LCSW
Association of Oncology Social Work

Friday, March 25, 2011

one of the many places that can help

According to statistics, almost no american will get through life without being closely affected by cancer. Whether that means you will get cancer or a family member, and no doubt some of your friends and colleagues. There are many places that can help you get through a cancer diagnosis and treatment including state and local agencies, american cancer society, komen, avon, livestrong, hospitals and schools. I received a lot of free help at my local teaching/university/hospital in utah. I've pasted today's livestrong blog below because it shows some of the ways it can help you. I'm not sure how their services work for previvors, but it is worth checking out.

Navigating Treatment Options

Herb called because the doctor told him to “get his things in order”. Steve emailed because he had no idea what his doctor said. Larry said he had no money to pay for his chemotherapy. Peggy called because she was so depressed that she couldn’t get out of bed. And Jennifer couldn’t make her doctor understand that she was worried about a recurrence.
All of these people got help through ONE phone call to LIVESTRONG Navigation Services. Most people ask, “What are “Navigation Services”? The answer is simple…..they are just fancy words that mean “We can Help.”
Herb is receiving ongoing consultation with a cancer nurse who told him there was hope and she helped him get a second opinion. He is currently excited about the clinical trial that he is enrolled in and hopeful that he will be around to see his grandchildren.
As a young man, Steve was especially concerned about how prostate cancer treatments would affect his quality of life. He received extensive education sessions and working with a cancer nurse, he created a framework to make his decision. He completed his treatment and has no regrets about his decision.
Larry didn’t realize that there were financial and insurance counselors to help him apply for assistance. He is currently undergoing treatments and getting most of it paid for.
Peggy was so overwhelmed with sadness that it was affecting her family. She is now talking with counselors at LIVESTRONG and signed up to get a peer mentor to share her journey. And Jennifer decided that she could talk to her doctor after all, without being intimidated. She did and got the results that she wanted – she is scheduled for an MRI sooner than planned.
A cancer diagnosis is difficult to face and very difficult to understand. The medical terms are like another language and the treatment choices make you dizzy; all this at the very same time you are afraid and anxious if you are going to live or going to die. Finally, getting cancer costs a lot of money and most people don’t have enough. LIVESTRONG and their partners are here to “navigate” you through this overwhelming situation that cancer creates.
LIVESTRONG partners with the NavigateCancer Foundationto provide you with free consultation services about your cancer. NavigateCancer are experienced cancer nurses who are experts at helping you become empowered, educated and an active member of your health care team. They teach you about your specific tumor and about the options you can choose. They translate your pathology reports, scans and medical documents so you can better understand where your cancer is and where it is not. Most importantly, they help you weigh the pros and cons of these big decisions from a decision framework that they help you create. They will make you feel confident about asking the right questions and getting prepared to talk with your doctors. They will connect you to resources that you need to know about. And they will help you find a qualified doctor for a second opinion or be a sounding board to see if you are on the right track. They are with you for the journey; available both online and on the telephone.
The new LIVESTRONG Navigation Center in Austin, Texas will be a “one-stop” shop where the abundance of free services is only matched by the generosity of spirit you will find there. All are welcome; those that are newly diagnosed or those that are survivors, those that are caregivers or those who are family members, all can come to get help to navigate their journey away from cancer.
Sharon M. Bigelow, RN MSN ANP-BC AOCNP®
Executive Director
NavigateCancer Foundation

Wednesday, March 16, 2011

it starts now

How many of you put off things because of lack of time, lack of money or maybe just lack of planning? You work hard, you're tired, you have a family at home that needs you, you're in school, you can't afford to take a trip, you don't have time to go to the gym, you'll do that next month or over the summer or when your student loans are paid off or, or, or...

Relax. Take a breath. Look at your life. Are you enjoying it? If not, what can you do to change it? Can you squeeze 30 minutes into your day to do something just for your enjoyment? It could involve someone else, as long as it is for you. Do you even remember what it is that you enjoy? Sometimes we forget what we like, especially if you are partnered and/or have kids or someone else you take care of. I dare you to find yourself again. I challenge you to enjoy yourself.

Do you have a bucket list? I've learned that there is something more important than the items you might usually put on a bucket list: those once in a lifetime dreams of yours. I think people forget about the ordinary things that are right in front of them. Enjoying the crisp, cool air only found early in the morning (while walking your dog) before work on a typical, muggy new york summer day. An ice cream cone later, that same day! The flowering trees as spring approaches. Donuts at work on a friday morning. Happy hour friday nite. Girls nite out. Spending time with the nieces/nephew. A belly laugh. A belly full of great food. A concert, or better yet, a free concert! A great song on the radio. A smile given. A smile received. The cry of seagulls. I could go on and on.

Some days I just don't have much time or energy. Luckily I have a dog that really doesn't give a crap how I feel. She still needs to go for a walk. And luckily, walking is one of my favorite things to do. It is a quiet time for me. A time to stop worrying about things and just enjoy the scenery, the fresh air and moving about. I also use this time to plot the rest of my day and make some goals for myself. For me, I've found what makes me happy: nature and movement.

I work with the elderly all day. I'm new at it but it's not hard to figure out what needs to be done to be happy as you get older. Many of these people were very productive. Doctors, nutritionists, social workers, teachers, mental health care workers. Now they are the ones being taken care of. They lose their feeling of self-worth. They can't do the things they used to enjoy. They can't move the way they used to. One women always says to me that she wants to kill the person that said "these are the golden years!" Even though she is one of the ones that can still do most things by herself. I ask her if she had fun in her life and she says oh yes, she had a great life. No regrets there. She has good memories. I have another woman who mostly stays in her room and complains a lot. Although lately she has said that she wants to stop complaining and will scold herself when she does.  We try and get her out of her room even if it is to join in an activity for half an hour. The other day, someone mailed her a huge box of chocolate. She was so happy! She is pretty easy to figure out. If you walk into her room with a smile on her face, she responds with the biggest smile you have ever seen. Sometimes the grumpiest people are just afraid that no one loves them or needs them anymore. She used to be a caregiver back in the day.

What is my point? I have so many thoughts going through my head that it is not coming out very clear here. I guess my point is to enjoy life and enjoy it in the here and now. And realize that as you age, you may need to change the things you enjoy. I know I always say that I don't want to get old. Many of the things I enjoy involve physical activity. Things that I know I will no longer be able to do when I'm old. But maybe I need to rethink that. I have many interests and not enough time for them all. Just because I probably won't be snowboarding when I'm 90 doesn't mean that I can't enjoy other things. Maybe that is when I'll finally have time to learn spanish or the drums! Maybe instead of gardening I'll finally learn how to draw landscapes. Maybe when I can't work anymore I can be a mentor or a tutor if I still have the brain power.

I have another point that I'll try and squeeze in here. What you do now is going to influence you when you are older. How you use and treat your body is going to matter when you get old. Your body will thank you for the muscle and strong bones you're building right now! So many of the elderly I deal with have swollen, painful ankles. Some of it is from their drugs and some is because of their hearts. Remember the heart is a muscle. Get out there and use it. Walking will not only build up your heart, it will build up your bones. I know genetics and other shit play a part in how we age but still, get out there and treat yourself right. Don't have regrets. It starts now.

Wednesday, March 9, 2011

abort, abort!

Things are going well in my life. I have a job and I love it. I'm taking a class, and I love it. I got 100 on my test (I did miss 10 extra credit points though) and I have a perfect score on all 9 quizzes so far. I'm interviewing for a 2nd job, one that will actually pay my bills. I love my job but it is barely more than minimum wage so I'm hoping to get the 2nd job which is only part-time and cut back on the 1st job hours. And do that til I gain enough cna experience to land a hospital job. Working as a cna in a hospital instead of assisted living will pay my bills. I look forward to the excitement of the hospital and being more involved medically. I will miss my elderly residents and the relationship I have with them. It is a true partnership we caregivers have with them. Sometimes we are the cranky ones and sometimes they are. Sometimes I teach them things, but often they are the ones teaching. And oh yeah, for those of you that have had cancer and worry about if it will come back and how long you might live because of it: so many of my residents bear scars on their chests. Some have lumpectomy scars and some have mastectomy and bilateral mastectomy scars. They are in their 90s and have had a full life! I don't know how young they were when they got cancer but I do have an aunt that had bilateral cancer well over 30 years ago and still alive. It does happen.

I feel calm as I ready myself for my bilateral mastectomies. I've had over a year and a half to wrap my head around the idea. Not that it doesn't make me sad, but I know that I'll be ok and probably glad to just be done with this whole trip. Bonus points for decent insurance because I don't think I will be spending much out-of-pocket for anything. That helps a lot. I've talked to god and asked him to send me a sign to let me know what I should do. He said "What the fuck, Janine! How many signs do you need? I've given you two autoimmune diseases, tried to give you colon cancer, gave you a mutation, and baby cancer in both breasts. I know I let you slide by without ovarian cancer but do you need me to rent a billboard that says ABORT THE BREASTS! ABORT THE BREASTS!?" Oh, I guess you're right, god. Let's do it.

So I've read numerous "lists" of how to treat a cancer patient over the last couple of years and decided it was time to make one of my own. Some of it is personal to me, but many can be applied to most of us.

How to treat a cancer freak:
Don't ask me how I feel: I'm not on radiation or chemo. I'm not sick. I probably feel just like you: not enough sleep, not enough time and not enough money. 

Tell me I look great: I will need to hear those words over and over after surgery as my self-image is going to be in the dumps. So lie if you have to.

The "C" word: Acknowledge the cancer if you want to. If you don't want to acknowledge it, I don't care. I know it's a scary word and uncomfortable topic. Just don't avoid me because of it. I don't bite.

A year later: I had a friend recently get in touch with me and was apologetic for not talking sooner during my 1st go round with cancer. It's ok. I understand. I've done the same thing. My friends are my friends for life. Call me tomorrow or call me in ten years. I'll still pick up the phone.

Be direct: Don't ask me to call you if I need help after surgery because I won't. I'm too shy and too independent (stubborn) to ask for help. Instead, ask me if I need a ride, or dinner brought over or if you can stop by to visit.

Simple is great: If you want to say something, but don't know what to say, simple works just fine. I have a friend that sends me texts after I share my bad news. A simple "hi, just thinking of you" feels like a big hug.

No flowers necessary: Many of you sent me flowers or goodies last time. That was very sweet and appreciated but not necessary. A card is fine, or email or text or phone call. If you do feel like blowing money on me, donate to one of my causes. My wondertwin is doing the avon walk for breast cancer this june and needs to raise another $1,300. Me and dw are biking 100 miles in may for diabetes and need to raise $500 between us.

My other half: Please do ask my dear wife how she is doing. She bears the brunt of my anger and sadness as well as carrying her own. And if you are around and have time to spare, please do hang out with her during my surgery. Those hours in the waiting room can't be easy and I don't want her to be alone.

The door is open: Don't be afraid to "bother" us by calling or asking us to do things. Our lives are not on hold because I need surgery. If anything, we'd like to stay busy.

The same: Don't be afraid to treat me as you always have. I am the same person I was before this all happened.