Patient Stories Archives

Finding Meaning After the Caring Is Over.…

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.


It’s almost six months since mom died. I still am in a vulnerable place. Still trying to work, but not seeking it aggressively. Still trying to find my path forward. I had a bad fall about a month ago, and I’m still recovering. My knees, legs and feet are not right. Through no fault of my own, I lost my health insurance. As of today, I get to choose my plan on the exchange, and hope to get back what I lost, keep my doctor, and get back on track.
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In this weird time, I have learned something about myself. Through caregiving, I learned to be still. During the worst times before mom came to live
with us, I had to literally sit still in her apartment, and just be there when she was full of fear, hallucinating, paranoid. During the worst times of her dementia, when I was searching for information, help, connection, I found power in stillness. Overpowering my own fear. Being strong for her. It took years, moving her here with my husband and myself, fighting for everything she needed. She gained so much here. The return of her sweetness and fine sense of humor, the conquering of her fears, the benefit of community.

Fast forward to the last days of caregiving. More than six years later, mom had become so frail. At the end we brought in a hospital bed, supposedly to keep her safely in bed. What the universe didn’t know was that this tiny woman had the power to launch herself over the bars, or through the openings between the rail and the foot of the bed, and end up in her old bed, sitting in her wheelchair, or even curled up on the floor. I never had sleep. I never knew what or where she’d be when I went into her room. I needed to be on guard to hear her soft raspy voice call me at any moment.

But the thing that frightened me most and what I HAD to face and get over, was the fear of infantizing my mom, by changing her depends in the hospital bed. This fear was causing us to get up at any hour, and take her into the bathroom, where I had to hold her up with one arm and tend to her with the other. It was hard on her, she was too weak to support herself. It was hard on me, my shoulder was already compromised from the years of supporting her or steering her walker, among so many other things.

This fear grew out of caring for my dad years before, who had Parkinson’s, and was so angry at his loss of dignity. My brother and I have terrible memories of tending to him, and falling over with laughter when things went wrong. My dad was so angry. I loved my dad more than anything, and incurring his anger left me scarred.

So when faced with having to change my mom in her hospital bed, I avoided it as long as I possibly could. But finally, I asked the visiting hospice nurse (more about this later) to show me how. I learned a few tricks from her. But I still had to get over my fear of insulting her dignity. Mom was not like this. She didn’t seem to be angry that her daughter was changing her, holding her up. She was fighting her own weakness. She might not have known who I was at these moments. And mom had her sense of humor intact. Till the very end. This was her gift.

The night I finally changed her in the bed, I decided to reward us both at every turn with cheering! Praising her to the skies when she could turn over on her side, praising myself with my ability to do every task! Praising us both with loud cheering! Good for you! Good for me! Hooray for us! Hooray!

Now you may think this is a little nuts. And maybe it is. But by gaining courage through humor, I think I have found meaning and conquered my greatest enduring fear.

5 Lessons Learned from an Ovarian Cancer Survivor

Editor’s Note: Blog written by MyLifeLine.org founder and ovarian cancer survivor, Marcia Donziger. She shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27. 


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Marcia Donziger

In 1997 I was 27, happy, free, and traveling the world as a flight attendant. Newly married and ready to have a baby, I felt strong and invincible. My future was unfolding just as I expected it to. Until the symptoms appeared ever so subtly. Squeezing cramps around my waist. It hurt to pee. After a few weeks, I marched my invincible self into my doctor’s office, told her I diagnosed my own bladder infection, and may I please have antibiotics.

She decided to investigate a little further. After an ultrasound, she discovered a grapefruit-sized tumor growing on my left ovary. “Could it be cancer?” I asked. “No,” my doctor assured me, “you’re too young to have cancer.”

Surgery was scheduled to remove my “benign tumor.” I was excited to get it over with, so I could go on with my life and have babies. After 5 hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing in pain. My doctor hovered over me and broke the news, “I’m sorry. You have ovarian cancer. You’ve had a complete hysterectomy. We took everything out.”

What I heard loud and clear was “Cancer. You can’t have children.”

The diagnosis came as a shock. Stage IIIC ovarian cancer had taken over my abdomen, resulting in an emergency hysterectomy that I was not prepared for. The intense grief hit immediately. The loss of my fertility was most crushing. I had always wanted to be a mom.

Halfway through chemo treatments, I celebrated my 28th birthday, but there wasn’t much to celebrate. My marriage was dying. Cancer puts tremendous stress on a couple. Some couples can handle it together like champs. We didn’t. We divorced 1 year from the date of my diagnosis.

After treatment ended, I looked in the mirror to see what was left. I was 28 years old, ravaged physically and emotionally, divorced, and scared to date as a woman unable to have children. Who would love me now?

Now, almost 20 years later, I feel strong again (although not invincible).

With the benefit of time and perspective, I’ve distilled that traumatic cancer experience into 5 life lessons:

  1. Trust grandma’s reassurance, “This too shall pass.” As an ovarian cancer survivor herself, my grandma is living proof of this timeless wisdom. Stressful events don’t have to be permanent. We don’t have to be victims. Although cancer is extremely painful and unwelcome, the bright spot is we are forced to build character traits such as resiliency, emotional courage, and grit.
  2. Create your own joy in the midst of crisis. There are ways to uplift yourself during the chaos of cancer treatment. For example, I took a pottery class throughout my chemo months to find solace in distraction and art, which helped soothe my soul and ease the journey. What would make you happy? Do some-thing just for you.
  3. Stop doing what you don’t want to do. If you were doing too much out of obligation beforehand, try to change that. You are only obligated to make yourself happy. No one else can do that for you. The key is to use this wisdom to prioritize your time and honor yourself, so you can be healthy for others. Drop what doesn’t serve you. Drop the guilt. Life will go on.
  4. Connect with others. The emotional trauma is hard to measure in a medical test, but it’s real. Anxiety and depression can go hand-in-hand after cancer—it did for me. In response to the emotional challenges I experienced, years later I founded MyLifeLine.org Cancer Foundation to ease the burden for others facing cancer. MyLifeLine.org is a cancer-specific social platform designed to connect you with your own family and friends to ease the stress, anxiety, and isolation. Gather your tribe on MyLifeLine. You are not alone.
  5. You are lovable after cancer. No matter what body parts you are missing, you deserve love just as you are. Cancer tore down my self-esteem, and it took significant effort to build it back up. I am dedicated to personal and professional growth now. Look into your heart, your mind, your spirit. Try fine-tuning your best character traits, like generosity or compassion. Never stop growing and learning. We are not defined by the body.

To wrap up my story—I learned that when one door closes, another opens. Today I am the proud, grateful mother of 11-year-old twin boys. Born with the help of a surrogate mom and an egg donor, my dream finally came true of becoming a parent. Where there is a will, there is a way. Never give up on your dreams!


About MyLifeLine.org: MyLifeLine.org Cancer Foundation provides free websites to connect cancer patients with family and friends so patients feel supported. To learn more about how MyLifeLine.org can help you or someone you know affected by cancer, please visit www.mylifeline.org.

Living with Breast Cancer – A Patient’s Treatment Diary

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.


Today I turn 42….not up for celebrating at all…but grateful for the loving and warm messages from friends and loved ones around the world and from home. Grateful hubby and my mom are here with me.

Had a bout of feeling sick this morning and had to cancel my appointments. Feeling better now…hope it was just nerves and nothing else…as need to be STRONG and ready for Round 2 chemo this Saturday.
I think it should be better this time as I know what to expect in some of the side effects from Round 1 and feeling physically stronger and wounds are healing better.

I’m newly married – 1+ years. Diagnosed with breast cancer end of May and underwent a right Apr TD BCmastectomy multifocal tumor, with removal of 21 lymph nodes. I had an immediate reconstruction with TRAM flap procedure on June 13 and started AC chemo July 26. 12 weeks – every 3 weeks cycle. 6 months of chemo in total: AC and Taxol + Herceptin (weekly for 12 weeks after AC). Then Radiation daily for 5 weeks + 5 years of Hormone Therapy. My sister found this site for me as she realized that I have had limited contact with support groups here in Hong Kong due to limited English speaking groups. I am from Canada, lived in Dubai the last 5 years where I had met my hubby and we moved to Hong Kong a year ago.

I have been thriving on the words of those who can relate to my experience, well wishes and positive outlook! I just had a Reiki, Osteopath session and physiotherapy today. Needed it! Think my nerves are a bit shot….thinking I wasn’t nervous but likely am in anticipation of my next doctor’s appointment and review of how I am doing. I’ve found meditating helps a great deal and my Reiki master suggested I meditate for a few minutes every day for 21 days….This continues to be a journey for myself and self-healing.

Fast forward a few months….

I have finally finished CHEMO!! YAY! And have now started Herceptin every 3 weeks for 8 more months and Tamoxifen for 5 years. Radiotherapy started today and it will be daily for 5 weeks. Was quite stressful…and arms got numb and sore.

Life is closer to normal that it has been for quite some time and I’m able to travel and enjoy a few pleasures. My visit to Phuket was good and much needed quality time with hubby. Last week I was at the Farm – San Benito in the Philippines for a wellness program. So good for my body and healing.  I’m officially a survivor and I hope to share with you, learn about your experiences, your advices, tips and laughter! Love and light

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Frederique’s Lung Cancer Story

This post was originally published on MyLifeLine.org. MyLifeLine.org Cancer Foundation connects MyLifeLine logocancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Frederique was with her son when she started speaking strangely; she wasn’t finishing her sentences and her words weren’t making sense. She didn’t realize it was happening but her son was alarmed and contacted his dad and emergency medical services. The next day, Frederique learned she had tumors in her lung and brain. Her diagnosis was  Stage IV  lung cancer which had metastasized in the brain.

“We fear cancer so much as a society that when you find you have it, you just have to face it,” Frederique recalled upon learning her diagnosis. “The fear was gone.”

Two rounds of chemotherapy, two gamma knife sessions and three rounds of radiation were part of her treatment process over the two years she has been diagnosed , and she is now looking into a clinical trial.

Although she doesn’t know if she will ever be cancer-free, Frederique chooses to look at her cancer journey as an adventure, see the joy in her experiences and live a normal life. She does power yoga, exercises through hikes and walks, and even traveled to France, all while living with cancer.

“There is a disconnect with this diagnosis and how my body is doing. I really do live a normal life,” Frederique explained.

Frederique MLLEarly on, she created what she calls a “healing circle” to help her and her family throughout her cancer experience. She used MyLifeLine.org to share her story and coordinate volunteers.

“I think the technology is amazing. It helps me not only to receive support but also to give hope around me. Staying vibrant and positive throughout such a challenge seems to be inspiring for people. I am delighted that my experience can be of service that way,” she said.

Frederique’s advice for others facing a cancer diagnosis is to find a way to relieve the fear. “Cancer is such a fearful event, especially stage IV,” Frederique explained. “Find a way to ­not be scared of the disease. In my opinion, fear is detrimental to the healing process.” She keeps the fear at bay by meditating and connecting with the energy around her (yoga, chi gong, reiki), but she explained that anybody can find their own way of relieving the fear.

“I could live this journey in total fear and be in a dark mood all of the time, but then I would lose precious time. Yes, I have days where I am scared or sad but most of the time I prefer to live in joy,” Frederique said.

Thanks to the cancer, Frederique rediscovered herself, deepened her connections to others and shifted to a new understanding of the world. “I’ve never been happier, to be honest. I’m where I’m supposed to be now,” she reflected.

An Ounce of Prevention is Worth a Pound of Cure

An ounce of prevention is worth a pound of cure. It creates a sense of awareness and provides a window of opportunity for you. Sometimes it is a matter of accountability and sometimes it is about breaking old patterns.

When my father was diagnosed with heart disease many years ago, we started eating and cooking differently. That didn’t change my dad’s ways and he ultimately died of heart disease at 62 years old. I remember he used to eat and drink things that weren’t good for him and joke about it with me and then say: “Don’t tell mommy.” That was his choice. I made a different choice long before his passing to eat healthier. If I did eat things that weren’t healthy, my body sent signals to me that these foods weren’t acceptable to me anymore.

When my mom was in treatment for ovarian cancer I found myself in Medical Libraries looking for clinical trials that would save her. When she passed it was a catalyst for me to look into prevention for my own health. I went for genetic testing at NYU Medical Center. While I don’t carry the gene for breast cancer, I have to be cautious because of the history of cancer in my family. I diligently pursued my annual gynecologist exams and additional ovary scans and blood work. Additionally, I followed up with my 6-12 month mammograms.

The result of my taking my own action on proactivity toward prevention was a diagnosis of stage 1 invasive lobular breast cancer. To take it a step further, I was originally advised by my breast surgeon to only have one breast removed. I followed my intuition and chose a double mastectomy and that resulted in even more prevention. When my surgery was completed, I was told that the other breast was pre-cancerous. If I hadn’t been my own best advocate, I would have found myself in the same shoes at another time.

Since I was diagnosed at an early stage my Oncotype couldn’t justify chemo treatment either way, but I remain on Tamoxifen therapy for probably another seven years.

I have also been discussing ovary obliteration with my oncologist and another specialist because of my lineage of cancer. In all likelihood, I will have my ovaries removed sometime this year.

When I finished treatment for breast cancer and had reconstruction surgeries, I thought to myself: “Now what? Hmmm, I have focused for a year and a half on my breasts, now it’s time to get back to the taking care of my other body parts and I got back on schedule with my dentist, gynecologist and internist all in the name of self-care and prevention as I lead my busy life balancing career, family, fun and connection with others. I knew that if I didn’t exercise extreme self-care, I would be much good to others.

About a week ago, I am finished up 4 and 5 of Moh’s surgeries to remove skin cancers from my body. In order practice prevention, we have to know our bodies, face fear and get checked out.

In some cases, I do know that even prevention is not a cure, because my mother was one who religiously (not in a hypochondria mode) went to all of her doctors’ appointments, pap smears, etc., and still she was diagnosed with late stage ovarian cancer. The bottom line is prevention cannot hurt us like lacking in self-love will.

So….., what can YOU do to take an active part in your health? What does practicing prevention look like to you? It could be something as simple as changing your diet or scheduling doctor’s appointments that we hesitate to make because we are always caring for someone else. It could also be taking care of yourself in terms of mind and spirit and working on stress reduction? In what ways can you reduce stress and overload in your life?

This blog is being shared to create awareness and remove fear. Know your body! You are the only one who does. Practice prevention and self-care. Put yourself first so that you can be around to care for others. That is my message and my gift to you on this beautiful day!

If you need help in this area or any other area of your cancer experience, reach out to me gina@newbeginningswithgina.com or visit my website: www.newbeginningswithgina.com.

I look forward to hearing from you!

Xo Gina

Real Stories of Lung Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Caregiver 1: Female caring for Male with NSC Lung Cancer

My husband’s last scan was terrible. Everything that had once been invisible on previous scans had grown dramatically, and there are new nodes and tumors. He will get a port for Christmas, and start 2 new types of chemo by Jan. 1.

This is difficult to deal with for everyone. It was like we were able to live in a form of denial for quite some time. Not anymore….

He was diagnosed with stage IV non-small cell lung cancer a little over 2 years ago. He will start on a Carboplatin/Taxol combination. He will have a port installed just after Christmas, and begin the New Year with his 1st round of 6 cycles. So far, he hasn’t had radiation because it everywhere, so they have been trying to get it under control systemically.

I am so blessed to have a husband who, despite all he is going through, still tries to make life as easy for me as possible. I am so thankful for a wonderful family.

Patient 1: Female (USA) Lung Cancer

I have been thinking of making a journal about my health issues and here it is. This is great. I had cancer surgery almost 15 years ago and I have been cancer free and relatively healthy ever since. This last Oct. my illusion came to an abrupt halt. My lung specialist said I had a mass in my left lung and it needed to come out. Ah you said what??? He sent me to a Thoracic Surgeon and he was ready to sign me up for the next opening. I felt my stomach turn and I said I needed to see my Primary Care physician. I saw her a week later and told her I wanted to wait and see. She agreed and told me about a blood test that would screen for cancer. I had the test and it says I don’t have any Cancer in my system. I decided to get another opinion this time at UCSF. This is where I had my Lung Cancer surgery done in 1996. I am waiting for my appointment. It is in the middle of Jan. I don’t understand how well respected and learned doctors can do this. I have had two Dr. and a blood screening say they were wrong (and I’ll eat my hat if they’re right) but they insist the mass is cancer. I hope everyone gets second and third and fourth opinions. Well we shall wait and see. Thanks for the opportunity to say my peace.

My Cancer fears were gone once I had my surgery in 1996. I really never gave it another though. I did have yearly CT scans and they were consistently the same. I was well aware of the scar tissue present but I was a smoker. I was a hairdresser, used a lot of chemicals that are labeled dangerous. And I was a sun goddess and a swimmer and lifeguard. Again not very good conditions if you want to be cancer free. For any cancer!

I returned home from UCSF with the same old story. Let’s watch and wait. I will get another CT scan in 6 months and just go from there. Other than that I sure enjoyed being in San Francisco. I really love that town. I am feeling good and I will be doing life as usual for now. I started doing square dancing once a week and I will rejoin the gym. I hope everybody is feeling well and continues to have happy thoughts for their new year. 🙂

Well, I have missed the last two weeks of SD. I keep running a fever and feeling sort of sickish. I don’t want to be a rabbit out of the cage and push myself. I’m not in a race. I will rejoin the gym ASAP. I still haven’t heard from my doctor as to what she thinks is the next plan. I’m not too sure I will keep her as my primary Dr. She is way to controlling and this freaks me out. She works for me. I think more doctors need to remember they are working for their patients and any decisions need to be mutually agreed upon and that they are not the ultimate authority. I feel like she wants me to do everything her way and that I’m not her… Oh well, I did my will today and that went well.

Patient 2: Male (Malaysia)

Diagnosed with Stage 4 Non-Small Cell Lung Cancer, hv chemo treatment with Carboplatin + Taxol (6 cycles)2008 ; Tarceva (21/2 months)2008/2009 ; Cisplatin + Alimta (3 cycles) 2009; Alimta only (3 cycles) 2009 ; Alimta only (2 cycles) 2010.
Have experience Lung collapse and drain out fluid from lung in 2010.
Treatment not manage to reduce the quantity and size of tumor, but, manage to have it under control with no major changes for the total quantity and size since diagnose until now.

I proceed with chemo and this round I decide to use back the same drug that I use last year, Gemzar and Navelbine.

All went well after chemo I feel good and suddenly, situation changed and I started vomiting for 3 days, thereafter I felt very tired and I started to loss balance while walking. So, decided to proceed to hospital on. With blood test report, doctor ask me to admit hospital, as my Sodium is very low, it’s the cause of tired and dizzy, then my hemoglobin is low too, so, cannot proceed for chemo.

After all the paper work, I admitted and taking two bags of blood transfusion, then, follow by dripping of sodium water. On second and third day, they took my blood again, too bad, both show that no improvement on my sodium level, but, lucky that hemoglobin n RBW is getting so much better.

After 4 nights in hospital, I requested doctor to allow me discharge, no doubts I am not recover from short of sodium, but, I feel so much better. Finally doctor agreed and discharge me with sodium tablet.

Since back home, I feel good and I have regain my appetite, I really eat and enjoy.

Life goes on – I don’t think of I will ever rest from Chemo treatment for 5 1/2 months. Beside of the back pain disturb me, some breathless at times, basically, I have no complaints.

lung cancer ribbonI have delay my CT scan since April this year and finally got it done two days ago, and yesterday meet up with doctor to discuss about the result of scan. Overall, not much changes to my brain and bone, consider stable. But, compare with previous scan, tumor in lung show some 30% progression. Doctor advise me to proceed for Chemo by next week to get situation under control. Tentatively scheduled for early next week. Anyway, there are things for me to consider and I pray to Lord to guide me and show me the way for the treatment. My main concern is back pain that disturb me almost every night with the pain moving from one to another place at my back. Life now is with daily pain killer and because of the continue taking pain killer, I often feel tired / weak.

Spoke to doctor about getting opinion from Orthopedics to have some idea is the pain due to my spine, but, doctor told me that it is not necessary.

Well, I will arrange appointment with doctor in another hospital and have fix it on coming Monday, hopefully can have some solution. Life goes on, but, no more normal for the last couple of weeks and I hope that Lord will take away all the pain and restore my body with strength and energy.

No worry be Happy. Believe and have Faith.