A ton of thanks to Ashley, Elizabeth & The Astonishing Fartman for your generous donation to SPOHNC.
This support group has helped me in so many ways. Being apart of this group and meeting these amazing people has completely changed my life. Donations make it possible for caregivers, patients and family to be involved with treatments and research. Getting updates and knowing I am not alone is a great feeling.
Update on little me...
I have been totally bummed out. Trying to snap out of it. Why am I still shocked that I have cancer?? Getting back on my feet and heading into another week of treatment. I am having some swelling in my cheek and neck today and a horrible sore in my throat. Paul made me a lovely cup of warm honey tea. Honey is amazing!
I am doing everything I can to keep my immune system strong! And.... to fight off the issues of radiation.
To my wonderful brother....You are amazing and truly an inspiration. Your strength and determination has always given me so much will to fight and live a long life. I love you for all of your accomplishments! Congratulations! It was an amazing night! Thank you for letting me be apart of your journey.
Monday, July 25, 2011
Friday, July 22, 2011
What to say/do when a friend is sick
NYT article about what to say/do when a friend is sick
‘You Look Great’ and Other Lies
By BRUCE FEILER
Published: June 10, 2011
MY friend sat down and ordered a stiff drink. I didn’t think of her as the stiff-drink kind. An hour later, after our spouses drifted off into conversation, she leaned over the table. “I need your help,” she said. “My sister has a brain tumor. I don’t know what to do.”
Fabrik-Studios Ltd./Getty Images
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Health Guide: Cancer
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Readers shared their thoughts on this article.
Three years ago this month, I learned that I had a seven-inch osteosarcomain my left femur. Put more directly: I had bone cancer. That diagnosis led me down a dark year that included nine months of chemotherapy and a 15-hour surgery to reconstruct my left leg.
At the time, my wife, Linda, and I were the parents of 3-year-old identical twin girls, and we were often overwhelmed with the everyday challenges of having a sick dad, a working mom and two preschoolers. We survived with help from many people. Our siblings organized an online casserole club, so friends could buy us dinner through a meal service. Grandparents rotated in and out of our basement. My high school classmates made a video at our reunion.
But as my friend’s query suggested, some gestures were more helpful than others, and a few were downright annoying. So at the risk of offending some well-meaning people, here are Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick. And Four Things You Can Always Say.
First, the Nevers.
1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them. As Doug Ulman, the chief executive of Livestrong and a three-time cancer survivor, explained: “The patient is never going to tell you. They don’t want to feel vulnerable.” Instead, just do something for the patient. And the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.
2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”
3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I was stunned by the number of friends and strangers alike who inundated me with tips for miracle tonics, Chinese herbs or Swedish visualization exercises. At times, my in-box was like a Grand Ole Opry lineup of 1940s Appalachian black-magic potions. “If you put tumeric under your fingernails, and pepper on your neck, and take a grapefruit shower, you’ll feel better. It cured my Uncle Louie.”
Even worse, the recommenders follow up! Jennifer Goodman Linn, a former marketing executive who’s survived seven recurrences of a sarcoma and is compiling a book, “I Know You Mean Well, but ...,” was approached recently at a store.
“You don’t know me, but you’re friends with my wife,” the man said, before asking Ms. Linn why she wasn’t wearing the kabbalah bracelet they bought her in Israel.
4. EVERYTHING WILL BE O.K. Unsure what to say, many well-wishers fall back on chirpy feel-goodisms. But these banalities are more often designed to allay the fears of the caregiver than those of the patient. As one friend who recently had brain surgerycomplained: “I got a lot of ‘chin ups,’ ‘you’re going to get better.’ I kept thinking: You haven’t seen the scans. That’s not what the doctor is saying.” The simple truth is, unless you’re a medical professional, resist playing Nostradamus.
5. HOW ARE WE TODAY? Every adult patient I know complains about being infantilized. The writer Letty Cottin Pogrebin, who had breast cancer, is working on a book, “How to Be a Friend to a Friend Who’s Sick.” It includes a list of “no-no’s” that treat ailing grown-ups like children. When the adult patient has living parents, as I did, many mothers in particular fall back on old patterns, from overstepping their boundaries to making bologna sandwiches when the patient hasn’t eaten them since childhood. “Just because someone is dealing with a physical illness,” Mr. Ulman said, “doesn’t diminish their mental capacity.”
6. YOU LOOK GREAT. Nice try, but patients can see right through this chestnut. We know we’re gaunt, our hair is falling out in clumps, our colostomy bag needs emptying. The only thing this hollow expression conveys is that you’re focusing on how we appear. “When people comment on my appearance,” Ms. Linn said, “it reminds me that I don’t look good.”
Next time you want to compliment a patient’s appearance, keep this in mind: Vanity is the only part of the human anatomy that is immune to cancer.
So what do patients like to hear? Here are four suggestions.
1. DON’T WRITE ME BACK. All patients get overwhelmed with the burden of keeping everyone informed, coddled and feeling appreciated. Social networking, while offering some relief, often increases the expectation of round-the-clock updates.
To get around this problem, I appointed a “minister of information,” whose job it was to disseminate news, deflect queries and generally be polite when I didn’t have the energy or inclination to be. But you can do your part, too: If you do drop off a fruitcake or take the dog for a walk, insist the patient not write you a thank-you note. Chicken soup is not a wedding gift; it shouldn’t come with added stress.
2. I SHOULD BE GOING NOW. You’ll never go wrong by uttering these five words while visiting someone who’s sick. As Ms. Pogrebin observes of such visits, don’t overstay your welcome. She recommends 20 minutes, even less if the patient is tired or in pain. And while you’re there, wash a few dishes or tidy up the room. And take out the trash when you leave.
3. WOULD YOU LIKE SOME GOSSIP? One surefire tip: a slight change of topic goes a long way. Patients are often sick of talking about their illness. We have to do that with our doctors, nurses and insurance henchmen. By all means, follow the lead of the individual, but sometimes ignoring the elephant in the room is just the right medicine. Even someone recovering from surgery has an opinion about the starlet’s affair, the underdog in the playoffs or the big election around the corner.
4. I LOVE YOU. When all else fails, simple, direct emotion is the most powerful gift you can give a loved one going through pain. It doesn’t need to be ornamented. It just needs to be real. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” The fact that so few of us do this makes it even more meaningful.
Not long ago, I reached out to my friend’s sister, Amy, who had endured three surgeries in the previous six months for a tumor in the thalamus. She was undergoing physical therapyand had just returned to work. What most annoyed her, I wondered?
“I liked having the family around,” she said, referring to her six siblings and their five spouses. “But I had a lot of issues with my room seeming like a party and my not being in a place where I could be down if I wanted.”
The most helpful tip she got? “People reminded me that I had a free ‘No’ clause whenever I needed it. Especially as someone who tends to please, that was helpful.”
So in the end, what would she say to someone like her sister who leaned over and asked for advice?
“Fully embrace the vulnerability of the situation,” she said. “I would never have gotten through it if I hadn’t allowed people in.”
That even included a new boyfriend, who became so intimately involved in her recovery that she allowed him access to her innermost self. The two became engaged in the I.C.U. and plan to marry next year.
4 more weeks!
I am so happy that today is Friday! I get two days off from the hospital and
20 more treatments to go! I wouldn't say time is flying by...but I am moving forward. I love the staff at MSKCC in Commack. They have been so wonderful and have made this experience a little easier. I don't think I cried this week. I am doing better than I thought!
I have been keeping myself super busy, which has made me so tired. Birthday partys for friends and myself ( I had 3 of them), babysitting, spending time with my family. It's nice to continue treatment and still be able to enjoy my life. It's so important for me to have a full day, even if I have to nap every so often. I haven't been spending too much time in the sun. I would love to just spend everyday at the beach with a good book. Wow it's been hot out. I do love the heat! I know that I just have to get through the next few weeks and then I can go away and enjoy.
A friend told me today to think of my treatment like my full time job. Instead of getting frustrated with the daily routine, I need to think of it as something else. I have been driving to treatment alone. I enjoy the time to myself with my thoughts. I have been more relaxed in the room when I get there. I am not being stubborn, I will let other people take me. I just hate being late and like to drive. That's just my thing. I know as it get's harder I won't be doing to much.....then everyone can take over.
The pain has been bearable. Holding on as long as I can without take pain pills all day. I have even skipped the sleeping pills. I need to keep my immune system strong to get through the next few weeks. Today I felt my body run down....not really sure though. It is hard to figure out what's going on. My hair started to fall out on one side. I try not to blowdry or brush it too much. I have noticed that my mouth is so super dry, especially at night. I wake up so often to drink and put drops in my eyes. I hate waking up during the night.
All I think about is my friend Billy. I am in tears thinking about him. His voice, I can hear it now so clear when he use to speak to me. He was always drinking something to help with his dry mouth. Things got so horrible for him. I know he went through something different, but I just remember how hard it was. I don't want to be in pain like that...I am so scared that I will.
I don't like air conditioning and overhead fans. I start with the door open to get some cool air from the living room. Fan is on for a while, and I sleep with an eye mask because I can't stand the air hitting my dry eyes.
Within an hour the door is shut, fan is off and I am dripping wet from the heat. Strange, but I love it.
I should rethink the air conditioning, it's hot. I am missing my home more and more and can't wait for it to be done (it's being fixed :). I have been so uncomfortable and It's causing daily frustration. The little things. I would love room service right now, something that was fantastic in Boston.
We had our 8 year Wedding Anniversary this week. It's amazing that we have been through so much. How strong we have both been for one another. I have survived for my husband, I promised him I would. I would of walked away from all this pain years ago. He is my strength, because I couldn't imagine tears falling from his eyes for me. I can't bare to think of him heartbroken with loss. My gift to Paul is Six weeks of torture treatments, so I can keep him happy and smiling. Because all he wants is a healthy wife, and all I want is this cancer to be over and gone.
It's so difficult to want to fight for a life that seems to always want to kick you down. Go away Cancer cells!
Believe is wishes. Dream in color. Positive thoughts. Appreciate the living. Give back, do something nice this weekend for someone else.
Special News of the week:
Happy Birthday Kristen
Happy Birthday Sean and Baby Gigs Ryan!
Congratulations to Brian (aka Bman) and to Robert (aka Robbles, 2times, doorman)
Big Congrats to Nance for getting her framing grant! Good Job sister!
Boston Greg got married!
The pain has been bearable. Holding on as long as I can without take pain pills all day. I have even skipped the sleeping pills. I need to keep my immune system strong to get through the next few weeks. Today I felt my body run down....not really sure though. It is hard to figure out what's going on. My hair started to fall out on one side. I try not to blowdry or brush it too much. I have noticed that my mouth is so super dry, especially at night. I wake up so often to drink and put drops in my eyes. I hate waking up during the night.
All I think about is my friend Billy. I am in tears thinking about him. His voice, I can hear it now so clear when he use to speak to me. He was always drinking something to help with his dry mouth. Things got so horrible for him. I know he went through something different, but I just remember how hard it was. I don't want to be in pain like that...I am so scared that I will.
I don't like air conditioning and overhead fans. I start with the door open to get some cool air from the living room. Fan is on for a while, and I sleep with an eye mask because I can't stand the air hitting my dry eyes.
Within an hour the door is shut, fan is off and I am dripping wet from the heat. Strange, but I love it.
I should rethink the air conditioning, it's hot. I am missing my home more and more and can't wait for it to be done (it's being fixed :). I have been so uncomfortable and It's causing daily frustration. The little things. I would love room service right now, something that was fantastic in Boston.
We had our 8 year Wedding Anniversary this week. It's amazing that we have been through so much. How strong we have both been for one another. I have survived for my husband, I promised him I would. I would of walked away from all this pain years ago. He is my strength, because I couldn't imagine tears falling from his eyes for me. I can't bare to think of him heartbroken with loss. My gift to Paul is Six weeks of torture treatments, so I can keep him happy and smiling. Because all he wants is a healthy wife, and all I want is this cancer to be over and gone.
It's so difficult to want to fight for a life that seems to always want to kick you down. Go away Cancer cells!
Believe is wishes. Dream in color. Positive thoughts. Appreciate the living. Give back, do something nice this weekend for someone else.
Special News of the week:
Happy Birthday Kristen
Happy Birthday Sean and Baby Gigs Ryan!
Congratulations to Brian (aka Bman) and to Robert (aka Robbles, 2times, doorman)
Big Congrats to Nance for getting her framing grant! Good Job sister!
Boston Greg got married!
Wednesday, July 13, 2011
HAPPY BIRTHDAY TO ME!
I have only one wish when I blow out my candles. Every year it's the same wish.....one day it will come true. I will keep wishing.
Today.....
They put me in early for treatment today so I could have the whole day to celebrate and do anything I want!
My day will consist of SPF 100, Zinc, something to help the pain, A Nap....and me smiling all day. I have been getting pain in my face ( Doc said this would get worse through treatment and then subside). It's very uncomfortable and only pain killers help. Paul is my chauffer!
We'll I now have two balloons. Congratulations and Happy Birthday!
A beaufitul day! I am going out to enjoy it!
Pinch Pinch from your Cancer (strange...zodiac sign) Crab.
I am going to the beach where I belong!
Today.....
They put me in early for treatment today so I could have the whole day to celebrate and do anything I want!
My day will consist of SPF 100, Zinc, something to help the pain, A Nap....and me smiling all day. I have been getting pain in my face ( Doc said this would get worse through treatment and then subside). It's very uncomfortable and only pain killers help. Paul is my chauffer!
We'll I now have two balloons. Congratulations and Happy Birthday!
A beaufitul day! I am going out to enjoy it!
Pinch Pinch from your Cancer (strange...zodiac sign) Crab.
I am going to the beach where I belong!
Saturday, July 9, 2011
Congratulations!
I got my CONGRATULATIONS balloon!
Paul surprised me with it after treatment. I love it. It says, " hooray, wow! And you did it!" He hid it in the back and I had no idea. I was so happy that he remembered. I have an awesome husband. He has been taking care of me from the beginning without one complaint. I appreciate every little thing that he does for me..... I love my balloon.
I had a lovely surprise party with candles, ice cream cake and pretty sun flowers. My niece planned it and did a wonderful job. She is adorable. Olive was super cute whispering to everyone before she led me into my party. Poppi, who is 93 followed us through the basement, reassuring me that he's fine on the stairs. Olive had the biggest smile on her face. I turned to Poppi and said....I think we are going to get cake!
And....yummy cake we had! Have a wonderful weekend.
Peace and hugs
Every life has a measure of sorrow.
Sometimes it is this that awakens us.
-Jack Kornfield
Paul surprised me with it after treatment. I love it. It says, " hooray, wow! And you did it!" He hid it in the back and I had no idea. I was so happy that he remembered. I have an awesome husband. He has been taking care of me from the beginning without one complaint. I appreciate every little thing that he does for me..... I love my balloon.
I had a lovely surprise party with candles, ice cream cake and pretty sun flowers. My niece planned it and did a wonderful job. She is adorable. Olive was super cute whispering to everyone before she led me into my party. Poppi, who is 93 followed us through the basement, reassuring me that he's fine on the stairs. Olive had the biggest smile on her face. I turned to Poppi and said....I think we are going to get cake!
And....yummy cake we had! Have a wonderful weekend.
Peace and hugs
Every life has a measure of sorrow.
Sometimes it is this that awakens us.
-Jack Kornfield
Friday, July 8, 2011
SPOHNC
SUPPORTING PEOPLE WITH ORAL HEAD AND NECK CANCER
www.spohnc.org
I had the most amazing night. I woke up this morning with a new fighting attitude. I went to a support group for people with head and neck cancers. I have never felt so accepted and understood in my life. The love I received when I walked in the room was overwhelming.
I rarely have anyone ask me about what I have been through and understand. It's just known I have cancer and that's it. But, it's so much deeper and painful than just saying "Cancer Patient".
When I told my story and got into the details of all my surgeries, Chemotherapy & Radiation....I saw heads shake with agreement. They know what I have been through and couldn't believe what I have endured.
After the meeting everyone came over to me to wish me luck through treatment. The feeling of finding them made me cry and I did all the way home. I have a huge group of people to talk too and they totally get it!
I have been so scared and petrified to go through this again. All I have wanted to do is talk to Elsa. On the way to the meeting I cried thinking about her and how I would be on the phone with her. Elsa, I miss you so very much. I am so happy that I met new people that understand.
Radiation Day :( Wish me luck. After last night I am feeling like a dozen new loving people are helping me fight in my corner!
I am still counting down to my Birthday! Here is what I would like for a gift. Go to the SPOHNC website and make a donation.
Enjoy your day
Saturday, July 2, 2011
Happy Almost
I am usually more excited when July comes around. I am sad that I have to have radiation in the summer and of all months.... July! This truly can ruin a persons birthday spirit.
This year I am not going to let it take the fun out of my "Celebration" time. It's my Birthday and I am proud to be alive and kicking. Yippee! My Birthday! Balloons and cake!!
I have so much in me right now that I want to spill all over my blog. My thoughts in the past few days have been so fogged with different emotions. I am feeling wonderful about my actions and decisions the past few weeks. Moving forward in treatment with hope that it will work. I gathered my team of lovely support angels. Everyone knows the deal on how to keep me smiling.
BTW.....Mich...Paige got me hooked on pretzel MM's! I may need a bag when I come over.
I walk the doggies everyday on the beach and find a ton of beach glass (Heineken bottles!). I have a little crystal bowl of my green clear and one brown treasures. I am amazed that I actually find so much. I also have beach duty cleanup in the works. Tons of plastic wash up on the rocks. It is so disgusting. Please stop throwing things out the window and off boats. I wish people had a little more sense. Totally gross to see it surrounded by beautiful shells and little crabs working their way back to the water. I will be picking up other peoples garbage because I care about the water!
Thursday was a bad health day for me :( I have been on steroids for days to help with my facial pain. Pain is still there..... along with beautiful steroidal acne that looks so darn pretty. I'm glad that I am super tan, it's not that noticeable. Of course, I took myself off of the meds due to the fact that I am still in pain. Living on clearasil and wondering how do teenagers deal!! My heart bleeds for you kids! Back to Thursday...the day of aches, dizziness, pains....puking.... check all on the doctors checklist! What a fun day! I pushed through and loved the feel of the cold bathroom floor! Why is that so comforting when you're sick??
I leave you now my little chickens..... careful of fireworks, appreciate all you have & love your friends.
This year I am not going to let it take the fun out of my "Celebration" time. It's my Birthday and I am proud to be alive and kicking. Yippee! My Birthday! Balloons and cake!!
Happy Happy Happy Birthday to me! I made it another year.
That's what I think everyone needs to understand about how I really feel about my Birthday. It was always just a day to celebrate and have a good time (song lyrics). Now it means more to me than just a day. I just spent another whole year living, suffering & smiling to get to another birthday! I am alive and I get to celebrate my life on this day. My life, something people take for granted. To me, it's a triumph....Victory! I deserve a round of applause. This is a life long battle for me and I am super happy to be a year older. I am alive to celebrate it and that's amazing in my eyes. Another year of torture for cake....I'll take it!
I have so much in me right now that I want to spill all over my blog. My thoughts in the past few days have been so fogged with different emotions. I am feeling wonderful about my actions and decisions the past few weeks. Moving forward in treatment with hope that it will work. I gathered my team of lovely support angels. Everyone knows the deal on how to keep me smiling.
BTW.....Mich...Paige got me hooked on pretzel MM's! I may need a bag when I come over.
I walk the doggies everyday on the beach and find a ton of beach glass (Heineken bottles!). I have a little crystal bowl of my green clear and one brown treasures. I am amazed that I actually find so much. I also have beach duty cleanup in the works. Tons of plastic wash up on the rocks. It is so disgusting. Please stop throwing things out the window and off boats. I wish people had a little more sense. Totally gross to see it surrounded by beautiful shells and little crabs working their way back to the water. I will be picking up other peoples garbage because I care about the water!
Thursday was a bad health day for me :( I have been on steroids for days to help with my facial pain. Pain is still there..... along with beautiful steroidal acne that looks so darn pretty. I'm glad that I am super tan, it's not that noticeable. Of course, I took myself off of the meds due to the fact that I am still in pain. Living on clearasil and wondering how do teenagers deal!! My heart bleeds for you kids! Back to Thursday...the day of aches, dizziness, pains....puking.... check all on the doctors checklist! What a fun day! I pushed through and loved the feel of the cold bathroom floor! Why is that so comforting when you're sick??
I leave you now my little chickens..... careful of fireworks, appreciate all you have & love your friends.
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