Sunday, September 30, 2012

Angels Along The Way ....

All along this journey, I've encountered many angels in human-form. Too many to name. My first angel came to me via my local Leukemia & Lymphoma Society chapter. After my hospitalization, I didn't feel as if my first oncologist was on the same page as me, so I called LLS to try to find another doctor. Although they don't give referrals, they were so helpful and offered to send me material to read, told me about their financial assistance program, and before we ended our call, the resource person said, "Jodi, would you like me to have one of our volunteers give you a call who may have a cancer such as yours?" When I told her of the rarity of my particular type, she said that she'd put me down on her list anyway. I thanked her for her assistance. About an hour later, the phone rang. I answered it. "Hello, Jodi. My name is Dick Post and I was referred to you by the local LLS chapter. If you wouldn't mind, I'd like to share my story with you." He told me a little bit about himself and then he asked about my situation. When I mentioned that I was only the 201st person to be diagnosed with SPTCL, he said, "Although I don't have your particular kind of lymphoma, I want to tell you my story." Mr. Post said, that ten years ago to the date of our conversation, he developed a lump as well as some other symptoms. I got goosebumps! HIS story eerily reminded me of what I was in the midst of! He asked me about my doctors and I said that I'd just made an appointment for a second opinion the following day. When I told him the oncologist's name, he said, "Jodi, that is the VERY doctor who saved my life! You are going to be in good hands!" More goosebumps! Mr. Post said that this doctor hospitalized him, and after countless tests and no answers, he called in a team of doctors from all over the country ... they discovered that his form of lymphoma was the rarest of all - he was the FIRST patient to be diagnosed with it! Suddenly, being "Patient # 201 paled in comparison. Mr. Post gave me just what I needed at that time ... a feeling of HOPE that I would get better. A sense of caring. He called me many times over the course of the next few months until I moved away. I can never thank him enough for being my special angel!
Bless you, Mr. Post!

Saturday, September 29, 2012

Your Inner Strength

When faced with any of life's challenges, its amazing how resilient we are. At first, we may question, Why Me? and wonder how the hell we'll survive. How did we get into this predicament? What can we do to change it? We may feel lost. Isolated. Unsure of what the future holds. I've been there, done that many times in my life. One thing that I've grown to realize is this ... with each challenge comes a "knowing." After some considerable thought, reassess what lies before you and meet it head on. Remind yourself that you are a SURVIVOR. You've done it before. Take the stance of, "this, too, shall pass..." (sorry for all of the cliches!) No one ever said life was going to be easy. That is what we're here on the planet to do. To live and learn. Once we realize this, we become more adept at finding that inner strength that lies within. So, when you're in a space where you feel that you can't go on, take a moment to sit and breathe. Meditate. Pray. Go sit at the beach or be one with nature. Then you'll find that inner God / Goddess within you that knows the truth. Your strength will guide the way to brighter days. Have a great weekend!

The Small Things Are the BIG Things -

Ever read the book, Don't Sweat The Small Stuff? Getting cancer changed the way I look at EVERYTHING! I used to have a minor case of "road rage" - not even one iota of some of the other people I've seen, but I had moments of screaming obscenities into the air, sticking up certain fingers out of frustration, etc. Now? I drive like an old lady. I enjoy the scenery. I've replaced, &%#@! with "Bless your lil' heart!" (Said with a Southern drawl, Ya'll!) When I'm stuck at a red light, I admire the birds who are peacefully sitting on the telephone wires and I roll down the window to listen to their songs. I'm not saying that I don't backslide occasionally, however, I try harder to maintain peace. My favorite F word isn't used as often, and I have learned to pick my battles. When faced with a "life challenge," you learn that the small things ARE the big things. Suddenly life is much sweeter!

Friday, September 28, 2012

Find Your Bliss

What makes you happy? Do you have any hobbies? If not, what could you start doing today that would help you to find your bliss? Writing is my favorite creative outlet. I've journaled since I was old enough to write. I published a book, Rhyming Activities For Beginning Readers in 1989 and I did freelance work for various Children's and Teacher's magazines. My love for writing really piqued when I took a creative writing class in the sixth grade. That was the year I recieved my first rejection letter! When I got sick, writing became a healing tool for me. I started blogging on a cancer site and got great feedback from my fanbase. My readers kept telling me, "This blog needs to be turned into a book!" So, that's been my main focus these past two years, editing and re-editing (too many times to mention!), putting the finishing touches on it. When I relocated after my divorce, I decided that if I wanted to find my bliss in being a true writer, I needed to immerse myself into everything a writer does. I joined writer's organizations, subscribed to writer's magazines, I attend workshops and onferences. I belong to a fantabulous professional writer's critique group as well as a publishing marketing group. I am surrounded by like-minded people who share the same interests. I know that my book, Living La Vida (Lymphoma) will help so many people and I cannot wait to share it with you!

Thursday, September 27, 2012

Feed Your Soul

Nutrition is key when it comes to healing and maintaining a healthy body. When struggling with cancer treatments, I know that proper nutrition can fall to the wayside. You may have no appetite. You're tired and weak. Emotionally drained. I am here to confess, that at times, I've been known to eat a bowl of popcorn for dinner, I'm not gonna lie! But, I also made some changes in my diet. I eat less meat, more fruits and veggies, and less processed foods.
One food that I LOVE is S-O-U-P! Every Sunday, I make a big pot of soup and freeze it in little plastic containers. Then, throughout the week, I'll eat it for lunch or as a quick snack. I try to keep a variety in the freezer ranging from Turkey Vegetable to Split Pea, Curried Butternut and Roasted Garlic, Minestrone, Avgolemono (a Greek Chicken and lemon soup), or Chili - to name a few. To me, soup is food for your soul ... you can either eat it as is, with a salad or some crusty bread - easy breezy, yet hearty and nutritious! So, if you find yourself wondering what you could possibly eat when you're not feeling well, have some soup ... it's soothing, comforting, and good for you!

Wednesday, September 26, 2012

I Have a Vision ...

If you had the opportunity to step into my office, you'd see my vision board hanging on the wall next to my desk. Over the years, it has been filled with pictures of the hopes and dreams that I wanted to accomplish. It helps me to stay focused on my goals. As each goal is met, the picture that represented that goal comes down off the board and something new is added. Since the summer of 2010, it is all about the writing! I took a photo of Wonder Woman, made a copy of it, then I took a picture of my face and superimposed it onto her body. (Hey! A girl can dream, can't she?!) Anyway, it reminds me of my strength and courage. By having a vision board, I've accomplished alot. If you'd like any ideas on how to make your own vision board, check out the link below this post.

How to Make a Vision Board

Tuesday, September 25, 2012

Positive Affirmations for Well-Being -ENJOY!

Strength and Support -

Where does one gather the strength they need to deal with a cancer diagnosis? After the initial shock, I did extensive internet research. I wanted to see what treatment options I had. I made calls to The Leukemia & Lymphoma Society as well as the American Cancer Society - they were so helpful. To this day, I've said that when I win the lottery, I'm going to give both organizations a BIG gift. If you need any assistance, please check out their websites, as well as the others that I've listed on the right side of this blog under the heading, Fav Sites. It's better to be well-informed, than floundering like a helpless soul. You have to become your own health advocate ... no one else will do it for you. And, if I can offer a few words of advice (that I learned the hard way) let go of being proud. When friends or family offer to drive you to doctor's visits, etc., take them up on their offers. I struggled for the first few months on my own because I was too proud to accept their support. I thought that I could do it all on my own. It wasn't until I was truly run down that I began to let others help me. What I discovered is this - not only are YOU struggling to stay alive, your friends are struggling to deal with seeing their friend suffer. If they offer to help, let them! You'll feel the love that they have to give, and they'll know that they are assisting you. Life is a balance of give and take. You'll soon discover that sometimes it's good to be on the recieving end.

Monday, September 24, 2012

Letting Go ...

"Healing may not be so much about getting better, as about letting go of everything that isn't you - all of the expectations, all of the beliefs - and becoming who you are." -- Rachel Naomi Remen MD One thing I've learned over the past few years is this - Never take anything for granted. Having a positive attitude helps with healing. It is NEVER too late to find your bliss. Once you learn to let go of everything and know that new life will emerge from the ashes, you will have discovered the most important lesson in life! Give it all up to a Higher Power and release the toxicity from negative beliefs. Love and let go ... have a good Monday, Lovies!

Sunday, September 23, 2012

There's No Place Like Home ...

I have to admit, I am one strong woman! Diagnosed with lymphoma the end of October 2009, I filed for divorce seven days later, divorced the first week in December and then I made the move to my little pink cottage in July of 2010. I brought the bare minumum with me. Simplified my life. I'm a full-fledged Writer. And I've NEVER been happier! The old me would've never had the nerve to throw caution to the wind and do this. Cancer put everything into perspective. Although I have the urge to travel, finances prevent me from doing so right now. But, I also love my cottage (my landlord's cottage!), my freedom and my new life. There's nothing like curling up with a good book on the chaise in my sunporch. Or sitting at my desk, working on this blog and my manuscripts with the sunlight streaming through the lacy curtains. Or cuddling in bed with Rose. There IS no place like home ...
Here's Rose - sunning herself on the chaise like the Diva that she is!

Saturday, September 22, 2012

Pamper Yourself!

One of the things I've learned over the past few years, is the importance of pampering yourself on a regular basis. Okay, STOP IT! I can hear you grumbling through cyberspace! If you aren't going to take care of yourself, then who will? Getting sick does not mean that you have to stop living. Au contraire, mon chere! Now it's more crucial to "love the one you're with!" Here are some ideas on where to start: * Get a Mani / Pedicure * Get a facial * Take a walk * Try yoga * Accupuncture * Tai Chi * Reiki * Take a class * Go on a mini vacation - Other rituals that I've found to be helpful are sipping herbal tea, lighting some candles, going to the beach, writing in my journal, watching the sun rise (or set), photography, gardening, meditating. Look at yourself in the mirror everyday and say, "I AM BEAUTIFUL!", for you are, Beloveds! You are ....

Friday, September 21, 2012

The Love of My Life .... my Angel Girl!

Look at this face! It's the face of an Angel that was sent to me two years ago. Her name is Rose, and, because of her, my life changed for the better. I was newly diagnosed, newly divorced and living alone for the first time in my entire life. I always had fur-face kids for companionship and after three months of solitude, I found her. She had a rough start in life before a rescue group saved her, and once I saw that sweet face on their website, I knew she was M-I-N-E! My neuropathy was really bad but she gave me a reason to walk again. She makes me laugh, loves me unconditionally, and has made my life worth living. She is my Angel Girl!

Thursday, September 20, 2012

Aromatherapy ...

Isn't this field of Lavendar breathtaking? Are there certain scents that make you feel at peace? Or ones that calm and soothe you? I have several scents that I use, either with candles, incense or essential oils, that totally relax me, releasing any tensions that I may have. Some of my favorites are lemon, grapefruit, nag champa, vanilla, apple, rosemary, lavendar, patchouli to name a few. As a writer, I'm wide awake like Little Miss Sunshine every morning between 4-5 A.M. (without the alarm, seven days a week ... I know, it's sick, isn't it?!). Anyway, my creativity peaks in the early morning hours and I have my morning rituals - 1) Take the dog out, 2) make myself a cup of tea, 3) turn on some quiet music, 4) light some nag champa incense, 5) W-R-I-T-E! Sometimes, I'll break off a sprig of lavendar or rosemary and place it on my desk while I am writing. I love the scent of vanilla in the bedroom - makes me feel cozy and snug, like I am home. What are YOUR favorite scents? If you've never tried aromatherapy, take time to see what aromas speak to you ... give it a try!

Wednesday, September 19, 2012

Ooooooh ... Ahhhhhhhhh ... !

As a child, one of my favorite summer pastimes was to go outside at dusk and catch as many lightning bugs as possible, put them in a jar and place them on my nightstand when I went to bed. What a magical feeling it was to watch the flickering lights all night. I always released them in the morning and then I'd gather new ones each night after dinner. When I saw this idea, I thought it was cool! Living in Florida, I do not get to experience lightning bugs anymore, so this might be a good substitute. (Personally, I would not allow children to do this activity, and if you have little ones in the house, maybe you can super glue the lids tight afterwards. Sorry, I taught Pre-K for 20 years and I still worry about child safety!) But, what a neat project to do before summer ends. And try to recapture those moments of light and love ... ENJOY!

Monday, September 17, 2012

Repeat after me ... I AM PERFECT!

When cancer strikes, it can rip you open to your very core. Everything feels exposed to the world. You get poked and prodded relentlessly. You may start to feel like you have no control over your body anymore. Your life revolves around doctor appointments, lab visits. You may feel as if you should rent a bed at the hospital because you're there so often for diagnostic tests and procedures. I know because I felt this way. I got into "Survivor Mode", just going through the motions, doing whatever it took to make it to the next day. It was like being stuck on a hamster wheel. No energy left. Your body feeling like a blob. Self-esteem? What's that? You may feel detached and isolated. I finally found that I needed to use positve affirmations to lift my spirits - to make me feel whole again. I read the book, You Can Heal Your Life by Louise Hay. This one affirmation in particular, really hit home. I had to reaffirm that I WAS perfect. I'd encourage you to try some positive affirmations. You may not feel the emotion behind the words at first, but eventually, you'll start to remember the perfection that lies within you. Have a blessed day ...

Sunday, September 16, 2012

Gratitude ...

I start each day with gratitude. As soon as my feet hit the floor, with each step I take, I say Thank you. Thank you. Thank you. Thank you. I never take anything for granted anymore. I speak my mind. I let everyone I love know how much they mean to me. I am my own health advocate. I'm living my life to the fullest. I am blessed!

Saturday, September 15, 2012

A GREAT website, & an even GREATER woman!

When I began research on SPTCL, I came across a website that was AMAZING! Trisha Torrey was misdiagnosed with SPTCL in 2004. This spurred her on to become not only a patient health advocate, she is an author, writer and speaker and I want to be like her when I grow up! Check out her site and you'll be inspired ... thanks so much, Trisha for all that you do!

Friday, September 14, 2012

Hellooooooo, Dahlings ....

When I saw this picture, it made me laugh!  Turning fifty made me take a look at the REAL me. I am one strong woman! I've been to hell and back, and, Honey, I AM F-A-B-U-L-O-U-S!

I recently went to a Drag Queen Brunch. Yes, I said, Drag Queen! And they were fabulous, too. After the show, I went up on stage to get my picture taken with them. As the one pictured on the left put her arm around me, she said, "Baby, you look just like my mother!" At first, it put me on the defensive, and she must've sensed my pissy-ness! (Even though she is a queen, she still has that Y Chromosome!) She said, "Honey, I could show you a picture of my mom - you look so much alike. She is beautiful and so are you!" She resurrected herself! Its taken me a looooong time to get to where I am today. I am beautiful. I deserve love. I am FABULOUS, Dahlings!

Thursday, September 13, 2012

GREAT NEWS!!!!!! I set up a Video Bar near the bottom of my page so that you can listen to some relaxing music by David & Steve Gordon while you read my blog! OR, you can click on a video and close your eyes and meditate for a few minutes ... ENJOY! In the meantime, listen to this and R-E-L-A-X!

Mandalas Circles For Healing

Full Circle ...

I am the luckiest woman alive. I have great friends who have been there every step of the way for me. I'm working towards my goal of publishing my book(s). I'm surrounded by such a loving, supportive group of writer friends who have helped me tremendously. Life is good. I've come full circle and it feels so rewarding.
The journey between what you once were and who you are now becoming is where the dance of life really takes place. ~Barbara DeAngelis

Wednesday, September 12, 2012

The Sound of Silence

Whenever I feel overwhelmed, I retreat to a quiet place and sit in silence. I focus on my breathing. I mentally relax every part of my body - from the top of my head to my toes. When I'm in the zone, I free my mind and relax. Sitting in silence may be difficult to achieve at first, however, once you get used to it, you'll want to make this a part of your daily routine. Silence IS golden!

Tuesday, September 11, 2012

Tell Me Something Good ...

Please share a positive experience that you've had during your journey - to give hope to others ...

Hang In There!

When you feel like giving up, remember why you held on for so long in the first place. ~ Unknown

Monday, September 10, 2012

A Story To Tell ...

When I was first diagnosed, I began a major internet search. I knew how rare SPTCL was, but I wanted to see if I could find others out there in cyberspace who shared a commonality with me. I posted on every cancer and lymphoma website I could find. After the first week, I received an e-mail from a woman in Milan whose husband was being treated for SPTCL. Her name is Patti, and she and her husband, Fabio have become great friends from afar. Patti and I still correspond on a weekly basis. Her love and support is unending. I can never thank her enough. One day I hope to visit her and Fabio in Italy. I've met so many angels all along my journey. That's why I wrote Living La Vida Lymphoma. The faithful readers of my original blog encouraged me to publish my book. They were the ones who kept me going, encouraging me along the way. When I saw the impact my story provided to others, I knew this project needed to be completed. I've had my share of writer's block at times, especially having to write about the low points. But, I realized that chances were, my readers probably endured some of the same challenges that I experienced, and that spurred me on even more. I have a story to tell ....

Sunday, September 9, 2012

This, I know is true ...

As you go through your struggles of living with cancer, one day you will find yourself in the moment - you'll know when it happens. Suddenly you'll feel a "release." A sense of knowing that you've come down from the apex of fighting for your life. You'll see that there IS life amidst the craziness. You not only survived, you're a WARRIOR!

Friday, September 7, 2012

I AM The Light!

From the time that I was diagnosed until only recently, I refused to have my picture taken. The medications that were used in my treatment, distorted my body and made me unrecognizable. I didn't know the face that I saw looking back at me in the mirror. I felt ugly. Hideous. Bloated like a Macy's Thanksgiving Day balloon. I gave up hope that I'd ever get back to the real me. My self-esteem was at an all time low. It was hard to imagine what the future held for me. Cancer can make you feel unworthy. Un-loved. Alone. Last October, I was weaned off of one of my treatment medications because it was doing more harm than good. It affected my liver and kidneys and I decided, along with my oncologist, that I wanted to give my body a break from these toxic meds. He reminded me that there is "no cure" for SPTCL. That we can always try other drugs if need be. That once it gets aggressive, there is no turning back. I left his office stunned. I've always maintained a positive outlook from the very beginning, and now I had my doctor there to remind me of what "will" happen to me. On the long drive home, I replayed his message over and over in my head. I became increasingly depressed. I'd recently begun to feel less effects from the meds and thought I was on the upswing. Now I was being told otherwise. A torrential rainstorm cropped up and I had to pull to the side of the road. The windshield wipers were a backdrop to the driving rain, which only worsened my mood. I began to cry. No, not a normal cry. Deep, sobbing, take-your-breath-away cries. I called my friend and asked her to meet me at a local coffee shop. When she arrived she wanted to know how my appointment went. I explained what the doctor told me and I started to cry again. She did, too. I let it all out. Right there in that coffee shop. Luckily there weren't any patrons nearby. She held my hands and asked me how I felt. I told her that I'd just started to feel like maybe I could get my life back. She said, "Well, then do it! If you are feeling good, then just go with it." Thank God for having my best friend there to put it all into perspective. I went home and from that day to this, I shifted my thinking. I start each day with a feeling of gratitude. I am thankful that I am alive. I have such a wonderful support system of friends near and far that I could never thank nearly enough for all that they have done for me. Once again, I found that little spark that has always been inside of me. I am focused on my writings ... I have a story to tell. Getting cancer can kick your ass. But, it can also make you appreciate what you do have even more. Thank you for joining me on this journey and have a great day.
You must find the place inside yourself where nothing is impossible.

Thursday, September 6, 2012

Magic Mirror ...

Living with SPTCL can be quite challenging due to the rarity of it. I am now in search of another oncologist who will take me on as their patient. I may have to travel across the state, but, I heard through word of mouth that this particular doctor has experience with T-cell lymphomas and is doing research. I've been through this before, only to be told, "Can I ask why you chose me? I have never treated anyone with this form of Lymphoma!" This, after two prior calls to her office where her office staff assured me she had experience in treating SPTCL. I'm hopeful that this time will be different. Wish I could just peer into a magic mirror first to make sure that this doctor will be the one. It is an emotional roller coaster trying to find someone who is willing to take the risk of treating someone who has a rare cancer. At times I feel like a leper. But, hopefully within the next month, I will have met the doctor who is going to change my life for the better. I am in search of my Prince Charming to whisk me away from SPTCL ...!

Wednesday, September 5, 2012

S-M-I-L-E !

Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy. ~Thich Nhat Hanh

Tuesday, September 4, 2012

Thank you, Josh! You rock!

This post is a tribute to Josh, who was there from the beginning for me. He has put together such a wonderful website that contains an abundance of resources for patients, care givers, supporters, and survivors alike called, Know  Go check it out!

Josh wasted no time at all in helping me, tweeting to everyone out there in cyber space about my diagnosis of SPTCL (Subcutaneous Paniculitis-Like T-Cell Lymphoma) and has been an angel, dedicated to helping others. A two-time survivor of Lymphoma himself, he knew there was a need to develop a network for anyone stricken with cancer, and it is, by far, one of the best you will ever see. Thanks so much, Josh!  Keep up the good work!