3 posts tagged “chemotherapy”

Meet Jacquie from the PatientsLikeMe Team of Advisors

Posted January 6th, 2017 by

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.”

Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.”

What gives you the greatest joy and puts a smile on your face?

I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals.

What has it been like for you managing multiple conditions?

First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case of such as it is highly rare. Every 3 months I have a maintenance plan of scans, blood work (that’s actually monthly) and colonoscopies as I have pre-cancerous polyps that must be removed before becoming cancer. The risk is too high, so that is my life with cancer. I chose this over a life of chemo. I have since my 20’s severe anxiety and panic disorder, my only maintenance on that is the highest dosage of Xanax 5x a day and pray I don’t get attacks. I have tried everything and there is no cure for anxiety like I have it, I would not wish a panic attack on my worst enemy. This is truly a disease that if you have never experienced it you would have no clue how horrible it is. Because of 14 months of intensive chemo my bones and joints have severe damage, especially my back. I go every 3-6 months, depending on the body part, for injections for the pain. THIS has really impacted my life. I can’t do the things I used to do, dance, hike, rake leaves, garden etc., because of the pain. My mornings begin with a good hour on my heating pad for my back just to be able to take a shower. This limits me in doing things on the spur of the moment and even getting to my shop on time. Every day I have to apply pain patches and take pain meds which I despise. But…such is my life, I deal with all of it, juggle all the bs and carry on. Top that off with coronary artery disease and stents, all due to the chemo. Never had heart issues. I won’t say this limits my life daily but it does long term now. I now have added regular cardiologist appointments, scans, tests, etc.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My personal conditions only have the obstacles I myself place on me. Society only needs to be aware that we are all different and we should never judge a person by how they look, talk, walk, or live. Under the shell of someone could be a person who suffers greatly and maybe that scowl on the person’s face isn’t because they are nasty, maybe it’s because they are in horrible pain. Maybe they just got some more bad news about an already bad condition.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I would tell them to think of their worst headache and multiply it by 10, that is real pain. Imagine being in your car and you are suddenly underwater and you can’t get out, you can’t breathe. That is anxiety. The feeling of being trapped and unable to get out the panic attack that ensues is like an out-of-body experience where so much adrenaline is pumped, you are exhausted when the attack is over but relieved you didn’t pass out or die like you certainly thought you would. Having cancer in the midst of this was just another fight for life big panic attack that didn’t go away.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

First of all, the word “chronic” needs to be redefined. Most conditions are not chronic, they are in a maintenance phase or they are lifelong conditions. However, I would always advise a second opinion. Once diagnosed, try and learn everything you can about your condition. Join a group like PatientsLikeMe where you can interact with others suffering and learning to cope with the same or like condition. Coping mechanisms are generally best learned from those who have been and are in the same shoes as you. Reach out and surround yourself with a support system, and most of all cherish that best friend. You will need him or her.

How important has it been to you to find other people with your condition who understand what you’re going through?

It was very hard until I found PatientsLikeMe, then it became easy. There were so many and so many far worse than me I could immerse myself in helping them which in turn helped me to cope and deal with my own issues. Someone always had it worse than me, someone was fighting to live with their last breath, and some do not live and become another statistic.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

After my first cancer diagnosis I had an Oncologist who did NOTHING for me for 5 months when I begged every visit for help and told him how sick I was. I changed doctors and found out that my cancer had already metastasized. Once I became strong enough I became completely in control of my medical care, I pick up all of my own scan results, tests, etc. I make lists of questions, I google everything and I follow up with all doctors. Many times I have already diagnosed myself before seeing a doctor and that includes the dentist and the eye doctor. In 2015 I knew my father was not well, and his complaints of pain went ignored by all doctors for several years. I went to my oncologist and told her something is wrong with him, please figure it out. He had stage 4 non-Hodgkin’s lymphoma of the bone marrow. He is now in remission. How’s that for all these great doctors who told him he was just getting old?

What made you want to join the PatientsLikeMe Team of Advisors?

Joining the team is allowing me to further my voice as a patient of several conditions. To help others who are newly diagnosed or those who think they have something wrong with them. To let them know they are not crazy, and not alone. I am also taking this opportunity to educate the doctors within my large medical circle that I am an example of the reason they became doctors. That my time is valuable, too. Sitting in your office and waiting for you for 5 hours is unacceptable. I have pain and it is an issue coming to see you. I am not just another number in your file cabinet.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Mostly I have been on the support side of PatientsLikeMe and try to help others. I have not used it as a tool to help me. I already know what I have and how I cope. But I must say there are days my coping skills don’t work very well, conversing to another member that is down and hurting and lifting them up puts my issues back into perspective. I’m still breathing, I’m still here.

What is it like to be you?

Why I ask myself that question I don’t know, maybe I am trying to understand what it is like to be me, I used to know and have an easy answer: it was great being me. Being me now is not always so great, but I am working on making my life better again. I have my new shop that, after my hurdles of getting there in the A.M., is a fun and rewarding place to be. I struggle with issues I have with my brothers. Aren’t they supposed to care about me not just when I am labeled as “sick and dying” but always? Do I expect too much? I think when one goes through so much and continues to constantly have to fight to keep a balance but never gets the balance it’s easy to fall into this abyss of “why me,” so I do my best to stay above that hole. I don’t ask “why me,” because there are no answers. I’m simply a good, driven person who wants to be happy, to help others, to enjoy my days, have fun like I used to and travel freely like I used to. I have a lot of “used to’s” I want back, maybe I should just live with who I am now but I refuse to give up or give in. There are ways I will feel better and I will find them. I got dealt a lousy deck of cards so I have to reshuffle now and deal another deck and make the best of it.

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Leaning on loved ones—An interview with lung cancer member Clare

Posted February 23rd, 2016 by

When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before.

We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

Posted November 19th, 2015 by

Jacquie today.

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past

Jacquie in September of 2013, shortly before her diagnosis.

September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned…

Tell us a bit about your life.

After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer.

What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was told every month that my doctor hadn’t decided on that yet. After Christmas of 2013, my parents urged me to change oncologists.

Jacquie with her boxer, Roman.

Because I was severely anemic, I spent a month and a half getting blood weekly before I could have a colonoscopy under the care of my new oncologist. In March of 2014, I was diagnosed with stage 4 metastatic lung to colon cancer. My surgeon told me that there were only 12 documented cases of lung to colon cancer and the prognosis for life expectancy was not good. I had the colon surgery with resection and started a hellish year of chemo. It wasn’t until May that I closed my business because my job was now to save my life!

I have a new dog, a Boxer named Roman. He is my rock! He’s a rescue and came into my life at the right time. He gave me a reason to get up in the mornings, take short walks, laugh and have a constant companion as most of my time was spent in bed if I wasn’t at chemo or the hospital or a doctor’s office. I never had children so animals to me are my family. The only good part of 2013 was finding Roman.

Jacquie and her father on her wedding day.

How has your life changed since your diagnosis?

Wow, I have to say I am not the same person I was before I was diagnosed and gone through everything I did. I don’t think anyone can. I find myself less tolerant of people who complain about the smallest of things like burnt cookies because they don’t matter.

Material wealth means nothing to me anymore. I lived well, worked hard and made good money. Now that is not that important to me. I’ve had all that and lost it due to cancer. And anyone’s life can be changed on a dime. So cherish what you have now, enjoy life and create memories. And take care of your health.

I am also now in the process of starting a new business with my father – a pawn and antique shop. It’s coming along slowly, but we’ll get there soon to open.

Cancer is a mentally and physical life altering journey. Mine was pretty extensive, but I am sure there are a lot of other women and men who can identify with this. If you approach it with knowledge and a positive attitude the transitioning is much easier.

In 2013, Jacquie was recovering from lung cancer surgery and her family wouldn’t let her be without a Christmas tree. Knowing her love for the ocean, they brought her a white tree. In 2014, after recovering from lung and colon cancer, Jacquie added 2 smaller trees as symbols of her strength in fighting cancers.

I lost all of my hair head to toe in the first few treatments of chemo, but I made it work with hats and an assortment of wigs. Cute hats, wigs, and learning ways to use makeup can make a huge difference in how you see yourself and how you feel about yourself. I still went to charity dinners, events, and I’ve done several fashion shows for cancer even on chemo. No one was the wiser that I was even wearing wigs. I never liked looking at myself in the mirror but accepted it as part of my “job.” My hair is growing back in and I’ve gone out in public. It’s not me at all, but it’s who I really am right now.

Now is the part where I pick up the pieces and put myself back together. How do I deal with the hair growing back? I let it breathe, use some cream to style it and a headband. I wear my wigs or a cute cap when I am running errands. I am trying to put together a monthly course to teach women how to apply makeup and wear scarves. I am lucky that I already have the experience, but it surprised me how many women do not know what to do with themselves so they stay home. Not right…Getting cancer is bad enough but having to feel ugly shouldn’t be part of it.

You mention that you had to be your own advocate with doctors. What would your advice be to others who must advocate for themselves?

As I explained above regarding my first oncologist, I learned from that experience that I better watch out for myself. I didn’t have anyone who had experience with cancer to tell me what to do. Having been through this and seen the mistakes made with my care, I’m adamant that if something is not right with me or I don’t feel right I talk to my doctors about it. I read every scan and I ask questions. Doctors are very busy and it’s easy to get lost in the shuffle. Keep a file with all of your tests. Keep a journal of things you need to have done. I know every three months I have to have scans and a colonoscopy. I often have to remind my doctor that it’s time. Keep track of your scripts as well.

You’ve said in a recent forum post that you’re “a firm believer in keeping up a fight even in the face of adversity.” What keeps you going? And how would you encourage others in your situation to keep going?

I am not a quitter, I never have been. Even given a diagnosis I may not live very long, I was sure to prove the doctors wrong. And yes, I am still here. I was ready to start living life again and then recently hit another bump in the road with a diagnosis of coronary artery disease. My cardiologist will decide whether to put in stents or do bypass surgery. Okay, whatever it takes. And now, I’m also supporting father – my best friend – through his first experience of chemo. After a bout of bad health, I took him over to my doctor and she diagnosed him with non-hodgkins follicular lymphoma stage 4. Since I’ve been through this, he is now my patient.

This August, Jacquie modeled for a local cancer charity, CARE. All funds raised go to people of her town for assistance with bills and medical expenses.

Some days I think my world is falling apart, but I still keep going. I think there is more work for me to do on this earth and God picked me to do it. I’m not a religious fanatic by any means but I have had a world of prayers around me. Everyone is different in how they handle traumatic and life-changing events. I try to tell people to find strength within, that there is light at the end of the tunnel. I see the beach at the end of mine and know I will get there someday soon. People need goals, baby steps – and remember that tomorrow is another day. Every morning and day is a gift that was not promised. Take that gift with gratitude. And spread it!

It doesn’t have to be a curse or a death sentence. It is an illness. You’ll have good days and bad days. If people find themselves depressed or anxious and unable to cope there is help. Find a support system, a therapist, a best friend, a forum like PatientsLikeMe. Surround yourself with positive people. You are a survivor and that is something to be very proud of. I have a group of friends and we call ourselves the Warrior Women. We are a tough group who’ve fought the beast and we are winning.

You’ve been very supportive to other members in the PatientsLikeMe forums. What has been your experience on PatientsLikeMe?

I’m very glad that my mother actually told me about this site. It makes me feel good to think that just maybe I can help someone else because of my experience. Or maybe I know of some way that their journey will be easier on them. I’ve enjoyed conversing with several other women. I’ve also learned more about lung cancer than I knew before through others’ experiences and how they are dealing with it now. I know it’s better and helpful to talk or converse with others who’ve experienced the same thing you have or similar. It’s hard with family and friends as I believe one can’t truly understand what you have been through unless they have gone through it themselves. PatientsLikeMe brings like-minded people together.

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