Beth Dickey's Lymphoma Story

I turned 40 the month before, October my favorite time of year. My youngest daughter would have her Sweet 16. I always loved brisk walking so I’d go to the highest parking garage level & take stairs. This day proved different. I did 3 flights & was fatigued. I couldn't shake the feeling & went to the ER. They did blood work, chest x rays, the works & sent me home; looked good. I began thinking how rotten I’d felt the last 6 months. I’d walk the mall, feeling like I could pass out, chalking it up to menopause. I was sick to my stomach & had pain in right side, wondering if I was having gallbladder attacks. Back to a different ER a week later. They ran the same test; sent me home saying I was fine. I was frustrated & told my husband, is this in my head? I said if I'm not better Monday I'm going to the family doctor. Monday came. No better. The doctor fit me in, I explained my symptoms. He did an abdomen & pelvis cat scan to check gallbladder.

The next day, they were to call w/results. I called him. I prayed God please don't let it be my gallbladder...I don't want surgery! When the doctor got on the phone, he sounded disappointed. “We’re consulting a specialist.” It didn't hit me right away. I said, ok why? He said, “You’ve so many enlarged lymph nodes in your abdomen, I’m waiting to hear back.” My knees were giving way. I was shaking. I said I want a chest cat scan. He didn’t know if my insurance would pay. I didn’t care, I’ll pay! I told him—I live in over a 1/2 million dollar house & drive 2 Escalades, making it clear I don't give a crap about money, I want to know if I'm dying. I went to hospital that day, got copy of my scans & report, what doctor read the xray, called the hospital & had him paged. He said he didn’t talk to patients; I said my insurance pays you. I told him what my doctor said about a specialist. He said, “You’ve so many enlarged lymph nodes I can't count them all. You need to be in an oncologist office. You could have Lymphoma.”

CANCER! I felt the blood drain from my body. I called my husband, worrying about telling my children & mother. I felt guilty for having something so deadly, thinking not for me but for my children & husband, afraid I’d die a horrible death at a young age, putting them through pain & heartache. Things moved quickly; 3 lymph nodes removed off my aorta dx’d me w/stage 3 grade 1 Non Hodgkins Lymphoma. My husband & I cried ourselves to sleep each night for 3 weeks ‘til I saw an oncologist. I was sore from surgery but lay on the table on my stomach for the dreaded bone marrow biopsy. The oncologist at our 1st appointment told me I had a cancer most get in their 60's or 70's but more young people are diagnosed every day. He was sorry to tell me it isn’t curable. I might have 7-10 maybe 20 years.

As I sat in shock, my husband & sister cried. I felt I was robbed of my life as I knew it. It would never be the same again, & it hasn't. I was so naive...me diagnosed w/cancer...never. He said we’ll either give you a stem cell transplant or R-CHOP (combo of chemos). He sent me for a 2nd opinion. The specialist said neither now. I was relieved. He said if I use up these options in the beginning I won't have big guns in the end when I need them most. My disease was slow growing, almost indolent. I asked about Watch & Wait; he discussed a clinical trial of maintenance Rituxan. He agreed to scans & bloodwork every few months & Watch & Wait.

One may think this is a walk in the park because you’re not getting treatment right away. No, it’s a way of life I had to learn to live...live & wait. It can consume you, worry & wondering. That's when my great love for the Lord came in. His grace sustains me. I’m thankful every day my cancer hasn’t progressed & I don't have to have chemotherapy.

What about my gallbladder? It didn't show disease w/a cat scan but had to be checked w/ultrasound & was removed a year later. I believe my gallbladder symptoms helped my diagnosis though they didn't see the problem right away. The enlarged node near my liver was removed & sent to pathology. The cancer was now a grade 2 versus 1 at diagnosis.

I’ve been so blessed by God & learned much through this journey. I’ve grown up. I learned to put my big girl pants on when I need them. The fear felt when bloodwork & scans come around... nothing matches. The unknown is scary when you’re praying for health & life. I remind myself & repeat...Fear & Faith cannot coexist....I choose Faith. I thank God in advance for His great news for me. I’m happy to say I just celebrated my 4th year on Watch & Wait, no chemo. I feel great & am living life. The thing that brings me most comfort is telling others w/Lymphoma we are not alone. We’re in this together because no matter how close you are to your spouse, your best friend, etc. no one knows this journey unless they live it. I hope this story helps others.

Linda Griffin's Lymphoma Story

I found a very small lump behind my ear in the summer of 1993. The doctor had it biopsied, determining it was NHL. I had never had a symptom, other than the lump. When I heard it was Lymphoma, I thought it was a death sentence. I was devastated. We began radiation, I don’t even remember for how long (I am told now I probably have chemo brain to some degree), tests were done and it was determined I was in “remission.” In 1998, I found another lump in my groin. Chemo pills were prescribed, and again I was declared clean for the time being. Then in 2002 I came out of remission again. At that point, my oncologist and I talked about the autologous stem cell transplant. After consultations, etc., I was scheduled for the transplant on May 6, 2003. I entered the hospital April 28 for a regimen of total body irradiation and chemo to get my white cell count to zero, then was given my harvested cells. I left the hospital on May 19, not feeling much better than I had all the while in the hospital. It took a very long time to recuperate, and in that time I retired from my full time job. 

Again, I came out of remission, and went on a regime of Rituxan, which is a monoclonal antibody, similar to chemo but doesn’t destroy the good cells. And since then, I have been in remission, thank you God. 

I remember first going to my oncologist who had told me of a woman who had been in remission for a very long time, and here I am going on 20 years. Not sure if this is helpful, but anytime someone would like to talk to me about it, I would be more than willing to give support. 

One more thing I would add. Do what you love, if you can. I am a musician, and play the piano at adult homes, children’s homes, bars, church, anywhere.  I wasn’t able to do this until I retired, so in a way I have the Lymphoma to thank changing my world.

Thanks for listening to my story.

Peter Thomas' Lymphoma Story

Cancer has touched a number of family members throughout my life - not that long at 44, but it really affected me most when my Mother was diagnosed at 50 and died at 51.

I must admit, it had a pretty profound affect [sic] on me and my family and although it was over 15 years ago it still remains with me.

So, having never even considered that I would ever get it, I was diagnosed with Non Hodgkins Lymphoma, Diffuse Large B Cell on Friday October 5th 2007 at 5.10pm. I was 40 years old, married with 2 beautiful young boys both under 5. It’s funny how profound moments in your life stay etched in your head and this was certainly one of them.

The realisation of the enormity of the whole journey came over me in incredibly powerful waves - very frequently at first, and none more so, when I saw the x-ray of my chest showing a mass of 11cmx7cm right in the middle, a big white cloud! I was petrified.

However, the team in Glan Gwili were just magnificent and my Consultant and the Senior Team there kept me focused. 8 courses of Chemo - one every 3 weeks for 6 months was the first assault. Followed by a multitude of scans and checkups, then - in their words, 'were going to throw the kitchen sink at it'. 2 x seperate [sic] weeks of 5 days Chemo at UHW, then a gap and then a Stem Cell Transplant again at UHW, finally followed by 3 x weeks of radiotherapy every day at Singleton.

Phew!

After all that, you know it then ironically, became the hardest battle for me. Just coming to terms with the whole thing. But one thing that I had in spades, was Hope. I never gave it up!!

I worked throughout all of my treatments, obviously when I felt rough or fatigued, I stayed home, but when I felt at least a little better, I went to work. Even went to work every day after my Radio. I thought I was Superman.

How wrong I was!!

The ALL CLEAR came in April 2009. Complete Remission. But, then things became difficult. Emotionally, physically and phsycologically [sic] it’s draining and you do not realise the enormity of 'the journey' and the trouble is, there's no rule book. You get great advise from many quarters and there are a million books and of course the internet - stay away from it!

Throughout Wales and the UK, we are blessed with exceptionally gifted and dedicated Cancer Charities and organisations that have specific skills in helping patients and their families get through all elements of the journey.

My journey has enabled me to reflect and consider where I am. But, it’s taken me up till this year to be able to focus on that. Everyone has a different path and that moment of clarity and epiphany comes to everyone - you just don’t know when. So, what I try and do is 'give back.' Give back as much as I am able to (I still have a few lingering issues, nothing major though), whenever I can for whoever I can.

Is Cancer 'Life Changing'? I certainly think so and I wish and really hope everyone who is touched by this disease has the ability to make the most of the growing help and support that’s out there to help them through 'their journey.' And if my experience helps and guides someone else, then I feel that it would have been fulfilling my journey.

http://tenovus.healthunlocked.com/blogs/50232/Is-it-life-changing

Tim Mayer's Lymphoma Story

Tim Mayer is beating some very bad odds. He has survived cancer not once, but four times in five years.

A new report says the disease is now the leading cause of death in every Canadian province and territory. Latest statistics show it accounts for 30 per cent of all deaths here. It hasn't accounted for Mayer's even though he thought it would.

"You're going to die. That's the first thing that goes through your mind," he said. "And to this day, it still goes through your mind."

Mayer is still here despite a rough five years. He survived three forms of cancer four times; underwent a bone marrow transplant; and was denied experimental treatment he wanted to try in Michigan.

He celebrated each remission, every win. And then last year, when he thought he had finally won the war, his doctor called.

"It's never good when the doctor themselves call you. And she informed me that they found two nodes in my chest," he said from a chair in his Windsor home with two tumours still slowly growing in his lungs.

Mayer said he feels like he just can't catch a break.

The long-haul trucker can no longer work, although he wants to. He can no longer perform woodworking or camp — his two favourite pastimes. And his long-term disability runs out in March, after five years.

"I try to live life as normal as possible," Mayer said.

The cancer, he said, has made him more caring, more willing to help people and accept help himself.

His story, although extreme, isn't unique.

According to the Canadian Cancer Society, 40 per cent of women and 45 per cent of men will get a cancer diagnosis in their lifetime.

The trick, according to Mayer, is finding a way to cope. For him, the internet has been his salvation.

He blogs and uses social media to connect with other cancer patients who share his fears and reality.

But that also means he loses more friends than the average Facebook user.

"It's emotional; like losing a brother or a sister," he said. "And I've had times where I'm on the computer and I'll break down and my wife says, 'who now?'

Recent high-profile cancer deaths, like those of Apple's Steve Jobs and the NDP's Jack Layton didn't help.

Mayer says the slow growing cancer inside him is just part of his new reality. But he's not calling it quits.

"Death. It's there. And if you let it get you, it will, if you let it," Mayer said. "But you take your moment think about it and then you move on."
(story courtesy of CBC News Canada)

http://mycancerjourneys.blogspot.com/

Marie Menoret's Lymphoma Story

I am French and I had Lymphoma in 1984. I was studying sociology. My interest were, at this time, in sociolgy of religion. When I was out of treatment, I decided to work about French oncology and made a PHD at l'Ecole des Hautes Etudes en Sciences Sociales in Paris. Then I became a medical sociologist and I am, right now, working at The Université Paris 8. The favorite class I teach is "sociology of health". I wrote two books about these questions, one called "Les Temps du Cancer" (would be if translated "Cancer Times") and the other "Sociologie de la santé." I would say that this lymphoma has made all my life different.

Marie can be located on Twitter: @Mariedebriere

Marie's website/blog (in French): http://web.me.com/mmenoret/Damocles_for_ever/Bienvenue.htmlAn interview with Marie (in French): http://www.dailymotion.com/video/x6usai_interview-de-marie-menoret_news#rel-page-2

Elizabeth Naylor's Lymphoma Story

My diagnosis of Non-Hodgkin’s Lymphoma came two years ago. I was 30 and "otherwise healthy". I was a mother to a two year old daughter , a wife, a sister, a daughter, a friend, a middle school teacher. I loved to read, to play on the beach, to ride my bike. I watched Law and Order re-runs and occasionally the news. In short, I was a normal 30 year old living a pretty normal life.
In August, I went to my doctor because of a nagging cough and some chest pain.  I was certain that I simply needed some antibiotics.  One week later I was having a CT scan to find out what the “something” was that had appeared on an x-ray. Never in a million years did I expect a cancer diagnosis.

On October 16th, I was diagnosed at with Primary Mediastinal Diffuse Large B-Cell Lymphoma, one of the many variations of Non-Hodgkin’s Lymphoma. I had a softball sized tumor just to the right of the center of my chest. At this time the tumor had begun to push through my chest wall and although it wasn’t all that visible to others I knew it was there and can’t say I loved the everyday reminder.  Eventually, this tumor would become much larger and very visible to others.

Four days after diagnosis, I began my first type of chemotherapy. The doctor explained that this particular chemotherapy was effective in 95% of patients and given my general health and age it was assumed by all that I would undergo 6 rounds of this chemo, some radiation, and by April 2010 would be on vacation with my family to celebrate my health and recovery. However, after only two rounds it was clear that it wasn’t working and I moved from the 95% to the 5% category. One of the great many things that I have learned from cancer is never to assume, expect the unexpected and then deal with what comes.

In November I started a second type of chemotherapy, this one requiring 4 day inpatient hospital stays. The plan was that I would do four rounds and then radiation and likely an autologous stem cell transplant. No such luck. Two rounds in and I was clearly worse. It was a Friday that we learned this and were exploring next steps with my oncologist. On the following Tuesday, with the blessing and great understanding of my oncologist at home, my husband and I went to The National Institute of Health to learn about an experimental protocol that the Lymphoma team there believed would help me.

I began my third type of chemotherapy at the end of that week. This chemo required 72 hours of continuous treatment as well as several more hours of other drugs to make up the whole cocktail. We travelled to and from Bethesda three times for this chemotherapy and on the third trip discovered that not only was my tumor virtually the same size but now I also had a tumor in my kidney. Things had gone from very bad to almost hopeless.

It was now March of 2010 and my Lymphoma team was strongly recommending an allogenic stem cell transplant as my best option. The National Institute of Health had an experimental transplant protocol that I fit into but we were also encouraged to talk with my oncologist at home. The conversation with him basically gave us the following information: We are willing to try the standard transplant if you want but we think you will die anyway.  This information made it quite easy to decide to participate in the experimental protocol at the National Institute of Health. This was a major turning point for us. My family and I moved to Bethesda where we knew we would stay for at least 100 days.

April 6^th, 2010 was one of the scariest days of my life but it was also rather anti-climactic. My sister had been previously confirmed as a full match for me, something for which I will always be grateful. Many people needing a transplant never find a match or have to move forward with a partial or non-familial match.

I spent much of the day simply waiting.  My sister spent the morning donating loads of wonderful stem cells and then we waited while the cells were tested and counted and finally in the late afternoon a batch was brought to my room. The transplant itself went like this: a small bag, sort of like a sandwich bag filled with what looked like tomato soup was hooked to my IV. We waited about 15 minutes for gravity to complete its work and then I was done. Pretty anti-climactic!

Now we began to count days, waiting to get to day +100. I was out of the hospital on day +9 and although went in and out of inpatient a few times during the 100 days, by and large I continued to improve. It turns out my sister, has a ridiculously strong immune system that did not like my tumors one bit!  I am now 19 months post transplant with no sign of cancer activity in my body. So, here I am a cancer survivor. Many have said I am a miracle.

http://www.cancergaveme2birthdays.blogspot.com/

Let's Tell YOUR Lymphoma Story!

Here it is, almost a year after my last—and first—post. What can I say? Life gets in the way. Chemo got in the way. It certainly hasn’t been easy. Yet now, I’m in complete remission from Lymphoma. I look better, frankly, than I have since I was in high school. I’m nearly 25 pounds lighter. My hair is shorter and came back with a lot more gray. Not a big surprise, eh?

And whereas life got in the way while dealing with this nasty drama, life goes on after the nasty drama. There are no guarantees. There is no way to know what’s around the next, and the next, and the next corner for any one of us. But I’m not taking it slowly, or with any less joy. I have a new book coming out before the end of the year, A Maverick Life: The Jack Kelly Story. Our kids are well. Our grandkids are priceless. Life is good.

So it’s time to get this blog going. I want it to be our blog. I want to hear more Lymphoma stories. Every one of us has a story to tell. This blog will tell about those of us who have, or have had, Lymphoma. While there are many cancers and all deserve attention, THIS cancer—Lymphoma—is the one I have come to know personally. I had to educate myself when diagnosed, and then explain to virtually everyone ... this IS cancer. Also had to tell how it was often different than others—of the blood and, no, not Leukemia, and, no, not one specific body part.

I wanna hear your story, my Lymphoma friends. If you have Lymphoma, or have had it, I want YOUR story here. Write it in 1st person, 875 words or less, no profanity or defamations, no specific doctor's names. Tell us who you are, how your illness has affected you ... and how YOU're whacking Lymphoma, and include a small photo! If I have to work on re-sizing, I may not use it. E-mail your story to: lindajalexander@gmail.com.