Archive for the ‘Care Giving’ Category

The Power of Saving Grace

July 8th, 2014 - by admin

by Robyn Hicks

 

As Jonathan’s wife/partner/soulmate, I was completely shaken at the time of his diagnosis. At the mention of lung cancer, I had to leave the room. My father died of lung cancer when I was 13 years old. I felt I was robbed the experience of a father, now my husband was being taken away. I panicked. Our life, as I knew it, was over.

Since, I have been depressed, angry, inconsolable, weak.

I have prayed harder in the past year than I have all my life. I have searched for answers and solutions and have dug deep down inside to muster the slightest hope for our family and our future.  Jonathan has been my saving grace in life, offering me more love than I could ever imagine. I still believe what we are going through is unfair; however, I do have a lot of faith in God and in advancements being made in research for lung cancer treatments.

Because of a genetic mutation called ALK, Jonathan has more treatment options available and I will do everything I can to make sure he gets the best treatment at the best institutions so that our future can be as bright as possible.

At first, I rejected my role as caregiver.

I wanted to be young and carefree. I wanted my life to look like the life of other twentysomethings who were invested in their career or preparing for babies. Now, I have learned and continue to learn the power of saving grace and thankfulness for each and every moment of our life together.

I quit that job that I hated so much. I stopped telling myself I had to be a success and make money. I was forced to stop. My life literally stopped. When the dust settled, treatment options were available and we sought advice and support from other lung cancer patients, caregivers, and the LUNGevity organization.

I realized that taking life one day at a time was not all that bad. It was like I began seeing in Technicolor after only seeing darkness. I appreciated the beauty in our simple, ordinary lives.

Jonathan is my greatest gift in life. I will do all that I can to care for him and love him each and every day.

___________________________________________________________________

Read more about Robyn and Jonathan and their new short film, Nirvana.

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My Crazy Life

May 12th, 2014 - by admin

By Beth Smith

As a 46-year-old with six children, my life is much the same as many others: Crazy! Two of my children are biological; two are stepchildren; and two are kinship foster children. Their ages range from 4 to 24.

My Mother

Lung cancer entered my crazy life in November 2005 with my mother.  That day I was scheduled to host a holiday luncheon at my home for my mother and some of our friends.  My mother called me early that morning to tell me she had thrown up blood and we should continue the party without her. That was not going to happen! My mother has always been my rock of Gibraltar. There was no way I was having a party while she was in the ER or Lord knows what.

I called an acquaintance of mine whose husband is a pulmonologist and he saw my mom that same day. Although the doctor could not yet confirm cancer, my mother knew by the look in his eyes.

My mother has an amazing way of being so in tune with her body.

My mother was diagnosed with Stage I lung cancer in her left upper lobe. I now know that—if lung cancer is the diagnoses—this is the stage you want. She underwent surgery on January 21, 2006 and has had no evidence of the disease since then!

My Other Mother

Three years later, Anna Hixon, my birth mother who gave me up for adoption at birth, was diagnosed with lung cancer. Cancer was also found in her lymph nodes and the area between her lungs, so her diagnosis was Stage III.  Doctors aggressively treated her with chemotherapy. Initially, she responded well to the treatment. Then in 2012, following a seizure, tumors were found on her brain. Gamma knife treatment seemed to help. However, in 2013, more tumors were found on her brain. Anna lost her battle to lung cancer on June 23, 2013.

My Lifelong Friend

On May 28, 2013, just days before my birth mother passed away from lung cancer, my best friend of 44 years was diagnosed with Stage IV lung cancer, which had metastasized to her bones. I told Susan we would fight it together. I told her she would have plenty of warriors in her corner. We talked about forming a Foundation in her name, doing walks, and many different things. Susan and I learned that—compared to breast cancer—there is very little funding or support for lung cancer.

But through LUNGevity, Susan and I both found help and hope. LUNGevity is about survivors, hope and networking. The people with this organization have changed my crazy life forever. I found a network of lung cancer survivors who have given me so much inspiration to get out and advocate for lung cancer. I have seen the impact lung cancer had on three very important people in my life. And it has given new purpose to my life, which is about to get even crazier.

I am informed. I am empowered. I am impassioned.

I am ready to fight this disease through advocating for more lung cancer research funding, compassion for patients and awareness that anyone can get lung cancer.

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Patients to Loved Ones: 15 Reasons Why at Times I Want to be Left Alone

February 11th, 2014 - by admin

Originally posted Wed, Jan 29,2014

by Brittany McNabb

People with cancer often talk about how they need alone time. Some WhatNexters need time to cry, regroup, or process their journey. As a loved one of someone with cancer it may be confusing to figure out why they want to be left alone or why they seem to be pulling away. Here WhatNexters explain reasons why they may want to be left alone; everyone has their own reasons, but WhatNexters want loved ones to know that just because they need quiet time does not mean they don’t need love and support.

I want to be left alone when…

1. I need to be left alone because it helps me turn back around and face the world.

Facing The World When You Have Cancer

via ratttmylife.blogspot.com

“Nights and weekends are spent with my husband and two daughters. Although I love the distraction they provide and enjoy that time with them, without my precious alone time I don’t think I would be dealing with things as well as I am. I don’t really have to explain why I need this alone time, because it happens when they are at work/school. But if I did have to explain it, I don’t know if they would understand. At least the kids wouldn’t. I use my precious alone time for anything I want. Reading, doing my stretching exercises, taking a bath, cleaning out a closet, taking a walk, cooking a new recipe, thinking, thinking, and more thinking. I deal with my darkest thoughts and I spoil myself. Then I give myself a big hug and get ready to turn and face the world.” - peachpoppy

2. I need time to reflect. 

I Need Time To Reflect And Think

via tenpennyimc.com

“There are times that I just need to think and to digest what has happened to me and how I have fought to get where I am. Most of the time I entertain these thoughts in the darkness of the night while my husband is sleeping. Each morning, I read the WhatNext Digest and answer any questions that I can. I feel very strong about this because I received so much support from my friends on WhatNext. However, when I have the rare morning when I seem scared and don’t want to face the topic of Cancer, I will not participate as it is too much for me to handle at that moment. It is just a weak moment that I am able to get over – and I am fine the next morning to pay it forward. I truly need that alone time and silence to meditate and to be open to God’s plan for me.” -JennyMiller

3. I need to clear my head.

I Need Time To Clear My Head

via healthland.time.com

“I do need alone time when I get overwhelmed or am just having a bad time with my pain and emotions. I usually go to the park up the road and find my peaceful spot as it helps so much. Even with winter here I still go at times and just sit in my truck by the pond listening to my music until I am ready and had my peace.” - riverratttt47w

4. I want to recharge my batteries.

Giving your loved one with cancer time to recharge their batteries allows them to enjoy nature, take a walk alone, read a book, or just sit in their room quietly. When they are done they will come back feeling recharged and it will be comforting for them to know you are still waiting there to support them.

I Need To Recharge My Batteries

via love-u.org

“I love to be by myself listening to the leaves shaking because of the wind, listening to the birds and mother nature sounds. When I am done being alone, all my batteries are recharged. Luckily I don’t even have to explain to my husband. I mediate, I pray, and then I come back to continue fighting.” - glam

“Being alone to recuperate and recharge is a good thing. Prolonged hiding out could be a symptom of clinical depression. Fine line there so I am careful but still need that time to recharge.”melanomamama

5. I need to cry and don’t want to do it in front of anyone.

While you might feel that you want to cry with your loved one with cancer, sometimes it may help them to understand they don’t want to cry in front of anyone. They may want privacy or they may not want to feel weak in front of you.

I Want To Cry Alone

via febc.org

“My private time was when my husband went to work and my daughter went to school and I had my private time. Those were what I refer to my closet days. I cried a lot and I did it alone. I got angry at who I don’t know, I questioned my faith, and I reflected. I learned to take it one day at a time. I new that tomorrow would come soon enough.” - ladyd2013

6. I need to regroup.

I Need To Cry

via google.com

“To regroup and gather myself for the coming storms.” - Facebook Contributor

“Sometimes I just have to regroup. Doesn’t mean I don’t love everyone around you.” - Facebook Contributor

7. I need time to try and let things go. 

People cope in different ways and some WhatNexters say that they need to process what is happening so they can learn to let things go. If you give them time to let go then they can then be ready to share those feelings of relief with you.

I Need To Let It Go

via mysticmamma.com

“I will not cry in front of others and my husband is in total denial of where I am in this time of my life and illness. For him, life goes on without interruption. For me, being Stage IV I am constantly interrupted with doctor visits, side effects, phones ringing and the guilt of not being able to see my Mother and Sister regularly. Mom has Alzheimer’s and the emotional pain is huge, along with my own. I need the time to truly let go.” - KatNT

8. I need to be alone when I feel sick.

Some WhatNexters want space when they feel sick; many have said that they appreciate when family gives them space when they don’t feel good or just don’t feel up to talking and socializing with others.

I Feel Sick Or Bad Day

via fromthissideofthepond.com

“I decided I had to have alone time to heal and reflect. Especially if I was not feeling good. I couldn’t see the point of having someone watch me be sick when I was in no mood for conversation. It also made it easier to cry if I wanted to. Or sing if I wanted to do that. I thoroughly enjoyed my time alone.” mcshap

9. I just got bad news or I am waiting on test results. 

Family and friends often want to hold their loved one’s hand and try to ease their anxiety while waiting on test results or coping with good news, but some WhatNexters need to cope in peace at those times.

I Am Waiting On Test Results

via cerritos.patch.com

“When I get bad news regarding my illness or am waiting for test results, I don’t feel like talking. I usually keep to myself for awhile until I can process the information.” - Facebook Contributor

10. I am having mood swings and don’t want to hurt anyone’s feelings.

Some WhatNexter struggle with mood swings and depression and feel like they don’t want to hurt their loved one’s feelings or say something they will regret. At these times they may need to retreat and be left alone.

I Am Having Mood Swings

via theguardian.com

“I have been experiencing some mood swings and at those times is when I need to be alone the most. I feel like I can be very hurtful at times when I don’t mean to be. I just need to be alone during these times. My family understands and they don’t take anything personally.” - PJki

11. I need silence and time to process. 

I Need Silence To Process

via huffingtonpost.com

“I enjoy the silence and like to be left alone a lot but I feel selfish for asking for my space at times. I think and process a lot.” - Facebook Contributor

12. I need “me time” to do something I love. 

I Need Me Time

via hamptonroads.com

“I have always needed to be alone. That is why I am an early riser. I am most creative when I am alone, Being sick has forced me to have some relative “check up on me” time. My daughter had the tendency to hover. So much so I once found a Red Lobster coupon and sent her with my credit card to have lunch.” - BoiseB

13. Because sometimes I need to celebrate cancer milestones alone.

WhatNexters say that there is a time to celebrate with others, but sometimes the best celebration is when they can feel peace with themselves over their own victory.

I Need To Celebrate Cancer Milestones

via huffingtonpost.com

“I need alone time. I had the flu recently and needed two days to process the symptoms and sleep. No phone calls required. Had my four months follow up tests on Monday and after an MRI in July I don’t need to be seen again until next year. Progress! I sometimes keep time for myself because I find that friends don’t understand the significance of these cancer milestones. They take it for granted that the cancer is gone. One thing I have learned through this process is to take nothing for granted.” ld_105

14. Because I need my own time to correspond with others with cancer.

No matter how much support loved ones can provide to their person with cancer, sometimes it is comforting for WhatNexters to be allowed their own time to reach out to others that know what they are going through. Many say that is the reason why they value WhatNext because it gives them an escape and allows them to be a part of a community that just gets it. Loved ones should not take offense to this, they still need your love and support, but it is also important to understand that they need to confide in others with cancer.

I Need To Keep In Touch With Others With Cancer

via dailymail.co.uk

“There were moments in the beginning where I wanted to be alone more often. I didn’t want my wife to see me cry, so I tried to wait until she went to work, (she worked nights). We have been married 46 years and she knows when I want to be alone. I am a 13 year pancreatic cancer survivor, and I now want to be alone for different reasons. In the beginning it was so I could cry without anyone seeing me, and now it is so I can clear my mind. Like many of you I am on the internet everyday, (4-6+ hours), working with people who have cancer, and it takes its toll on me…especially when someone passes away. I’ve been doing this for 12+ years, and if I don’t take breaks, I begin to relive my own experiences all over again. I’m not talking about 15 minute breaks, I’m talking about anywhere from 2 weeks to 30 days, and sometime a little longer. I feel strongly about our obligations as survivors to reach out to all of those who are following in our footsteps, and who are newly diagnosed with cancer. If I don’t take these breaks, and clear my mind, I am no good to anyone. So I do myself a favor, and take a break to be alone from time to time.” - Russ

15. I need to process the brevity of life.

Cancer and the prospect of having less time, especially for those with advanced cancer, can be a hard thing to process. A lot of WhatNexters have difficulty doing this with the pressure of loved ones hovering or waiting for their next move. Try to find a balance between being there for them and giving them time to process things on their own.

_____________________

Original Article

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Be a Healthier Caregiver

February 7th, 2014 - by admin

From Aoi Goto   ”4 Steps to Be a Healthier Caregiver”

Nutrition plays an important role in a caregiver’s life, not only to reduce the risk chronic disease, but to maintain optimal health, well-being, and strength to support and care for a loved one.

The benefits of proper nutrition include:

  • Heart health – a heart healthy diet can lower your risk of heart disease.
  • Bone and teeth strength – dietary calcium can helps prevent bone loss. The IOM recommends that most adults get 1000-1200 mg of calcium daily.
  • Increased energy – balanced nutrition allows you to maintain steady blood sugar and energy levels.
  • Weight control – it is important to be aware of caloric intake and balance it with energy expenditure for weight management.

Where to Start

  1. First, always start off your day off right by eating a healthy breakfast. Many people do not have appetite when they wake up in the morning, but it is the most important meal of the day since it will help you keep energized throughout the day – the energy required to carry out the tasks of a caregiver. In order to maintain this energy, eat healthy snacks, such as fresh fruits or nuts that are full of nutrients that your body needs. Avoid highly processed foods and snacks that are loaded with preservatives and sugar, including sugary drinks. They are sources of empty calories and will not provide you with sustained energy.
  2. Learn how to read and understand the nutrition labels and to pay attention to them whenever you are buying groceries. Many food labels can be deceiving, so it is important to pay attention to the ingredients list as well to ensure you are purchasing a healthy food.
  3. Make mealtime enjoyable. Meal times are great opportunities to get together with your family and friends, which makes it a perfect time to talk about healthy eating and to share your knowledge about nutrition. Maintaining a healthy relationship with food is the key to a healthy lifestyle.
  4. Make healthier food choices by making simple changes.  Here are some suggestions for each food group:

Proteins:

  • Limit how much processed meat and red meat you eat.
  • Choose fish, poultry, or beans instead of red meat.
  • Include more plant proteins like beans lentils, and nuts.
  • Use healthy cooking methods, such as baking, broiling, or poaching.

Vegetables/Fruits:

  • Eat at least 5 servings of a variety of non-starchy vegetables and fruits per day.
  • Include a variety at every meal and for snacks.
  • Emphasize whole fruits and vegetables.
  • Limit creamy sauces, dressings, and dips.

Grains:

  • Eat whole grains and/or legumes with every meal.
  • Choose whole-grained breads, pasta, and cereals.
  • Brown rice instead of white rice.
  • Limit intake of high-sugar foods.

Dairy:

  • Choose low-fat or non-fat dairy products whenever possible.

 

To learn about nutrition for cancer patients, take a look at our “HEAL Well: A Cancer Nutrition Guide, http://meals-to-heal.com/nutrition-guide/. It will provide you with information about basic nutrition and diet for cancer patients. It also provides some answers to how you can manage eating-related difficulties that may occur while you are caring for a cancer patient.

Resources:

“ACS Guidelines for Nutrition and Physical Activity.” ACS Guidelines for Nutrition and Physical Activity. N.p., n.d. Web. 07 Nov. 2013.

Beesley, V.L., Prince, M.A., Webb, P.M. (2010). Loss of Lifestyle: Health Behaviour and Weight Changes after Becoming a Caregiver of a Family Member Diagnoses with Ovarian Cancer. Support Care in Cancer 19.2(2011): 1949-1956

Ennis, Edel, and Brendan P. Bunting. “Family Burden, Family Health and Personal Mental Health.” BMC Public Health. BioMed Central Ltd, 21 Mar. 2013. Web. 07 Nov. 2013.

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Sometimes Love Is Not Enough

January 31st, 2014 - by Bob Hertzel

In the summer of 2008, my wife Susanne, started to cough. At first we did not think too much about it, but as the year continued, the cough did not go away and she began to have trouble breathing.  In an effort to figure out what was wrong, we sought the opinions of various doctors- endocrinologist, gastroenterologist, cardiologist and finally pulmonologist. She did not have a threatening thyroid problem, nor acid reflux disease, nor a cardiac condition. After many tests, X-rays,  CT Scans, and finally a bronchoscopy, Susanne was diagnosed with Bronchiolo-Alveolar Carcinoma- BAC, a non-smoker’s very rare form of lung cancer.  This type of cancer tends to stay in the alveoli of the lungs and does not tend to metastasize to other organs.  As such it was deemed treatable, but not curable.  But treatable to what extent?

Susanne was first given the normal, insurance approved drugs for treatment. She was then given Tarceva, which worked very well for about 6 months, and then two trial drugs over two years at Smilow Cancer Center at Yale, and Massachusetts General Hospital in Boston.  As the trial drugs proved no longer effective over time, and Susanne began to run out of options, we began to explore the possibility of lung transplants, as a last ditch effort to make something work to save her life.

Most transplant centers will not consider performing transplants on patients with lung cancer because of the huge risk of the cancer spreading outside the affected lungs. It was at the University of Pittsburgh Medical Center (UPMC) that Susanne was listed after lengthy testing. UPMC is one of the leading lung transplant hospitals in the country. They will perform 100-130 transplants per year while other major transplant centers may do 20 such procedures, and they have been doing these procedures since the 1980’s.

Nine days after we arrived in Pittsburgh and Susanne was listed, she crashed and was place in ICU for two months, being kept alive by a ventilator. She could not talk. She could not eat. She was told that we had to keep her exercised all through this otherwise she would get deconditioned and she could be de-listed as a result.  We learned in this process about all the work she had to do to get strong enough to survive the transplant operation. We learned about the precision of matching lungs from a donor, about the false alarms we had, and about the agonizing wait for a match.  Finally on Christmas Eve day, 2011, she got her new lungs after a 12 hour procedure.

She then went through recovery, and was allowed to return home after six months in Pittsburgh. Once we got home she went through pulmonary rehab, lots of followups, and was doing great………until she was diagnosed with liver cancer in September of 2012. She again sought as much treatment as she could take.

Throughout this whole process, she never complained about the nausea, the throwing up, the extreme fatigue and the weakness.  I got her to write down her thoughts, when she was able, during her two months on the ventilator. She just wanted to stay strong enough for the payoff of new lungs, and wanted to “live a kick ass large life” after she received them.  And she did as long as she could.

After Susanne finally lost her battle this past August, I finished writing a book chronicling the struggles of fighting a rare form of lung cancer, from diagnosis, to treatments, to lung transplant, to recovery, to recurrent cancer, all from a caregiver’s perspective.  I originally started to write the book “Sometimes Love Is Not Enough” as a cleansing experience for myself and to chronicle events of her strength, grace and courage for our family and friends.  I then realized that there may be some very relevant topics about the confusion of diagnosis, about patient advocacy and caregiving, about treatments and of course, the possible lung transplant option.  After Susanne passed away, I realized that this was also a love story. We had been married for almost forty years. She was only 56 when she was first diagnosed. I was with her every step of the way. I gave her care, advocated for her and loved her very, very much, but sometimes, love is simply not enough.

This book is now available through the publisher, Xlibris, http://www.Xlibris.com. or through me at bob.hertzel09@gmail.com, at discount prices.  Much of the proceeds will go to LUNGevity for research projects, and some will also go directly to lung transplant research at UPMC. I hope many who read this will get at least one nugget to use as they confront their own lung issues.

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