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5 years!! - Janet B's story


Janet B

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Five years ago today on a gray rainy afternoon , I sat all alone in an emergency room and listened to a doctor I had just met moments before tell me I had stage 4 lung cancer and that I had less than a year to live. I was 47 years old, married to my high school sweet heart, mother of 3 children 18, 19, and 21 and a preschool teacher. Up until then, I was perfectly healthy.

Thank God for second opinions.

Just that morning I had put the finishing touches on the Christmas decorations, put together a homecoming dinner for my children arriving home from college that night and gone to the local clinic for a CT scan and MRI ordered by my PCP to see if the back pain I had been having was just a pulled muscle or perhaps a slipped disc. But, in a split second, my whole world changed, it is hard to explain to people who have not personally heard the words “you have cancer”, but those that have heard them understand that your world goes black, you are filled with terror, and inability to breathe, grief, confusion, and did I mention terror?? I remember wanting – needing - my husband (who they had not let come into the room with me ) and thinking how can I tell my kids, how can I do this to them, how can I ruin their Christmas? So, when the doctor said he was going to admit me, I refused and went home to spend the holiday with my family. The day after Christmas I returned to the hospital and after numerous tests it was confirmed that I did have lung cancer and that it had spread to 3 spots on my spine. (side note: NEVER go to the hospital the week between Christmas and New Years! All the doctors are away, I never saw the same one twice!) Surgery on my spine was scheduled, but further tests revealed that the cancer had also spread to the pons of my brain. Surgery was cancelled and radiation began. I had radiation to my spine and “Fractionated Stereotactic” radiation to my brain. The brain radiation involved making a hard full skull mask and bolting it, and me, to the table. Doctors tell you they are going to do these things to you so casually, like it is no problem, so many times I have wanted to say to them - YOU try it (and on occasion I have!) During the month and a half of radiation, I changed oncologists – again I say – Thank God for second opinions! My first oncologist said to me, while looking at everyone in the room BUT me, that he would use the traditional carbo/taxol chemo combo on me, because that is what he used on “all his patients”. I might not know much about medicine, But, I knew that didn’t sound right. The new oncologist I found, and have been with for 5 years, sat down with me explained exactly what was going on with me, said he would treat the disease like a chronic illness and that I was an individual and he would treat me like one. He said he expected me to be in the 15% of 5 year survivors and I believed him. He had me tested for the EGFR mutation and I tested positive, which made me a perfect candidate for Tarceva, which I started on Feb. 15 2007. The Tarceva worked, although it did have some nasty side effects along the way. My eyelashes grew out of control,, my hair almost all fell out, I developed bloody painful sores on my nail beds, had trouble with ear infections and eventual trouble with hearing loss, dry skin, diarrhea, fatigue, and a rash on my face and scalp that got so bad I had to be treated for staph infections. At the side effects worst, after about 3 years, I went down in daily dosage from 150 mg to 100 and doing that along with an antibiotic 3 times a week has the side effects pretty much under control.

During this time, I discovered this group. It has been a Godsend. The people here are a wealth of comfort and knowledge. I “lurked” for quite a while, afraid to join, but once I did, everyone was so supportive and since I had lurked, I felt like I already knew them all! I also joined an “in person” lung cancer support group. I am very fortunate to live near one as there are very few. I have made friends in these two groups that I care about and pray for. I have lost friends in both of these groups. But belonging to a group of people that totally get what I am going through has been more than helpful. I can’t thank Katie enough for all she does here and for Lungevity.

For over 4 years the Tarceva kept me stable – with no evidence of active disease. Then in April of 2011 an MRI showed more spots on my brain, and, because of where they located, probable leptomeningeal disease. (which is where the cancer is in the brain and spinal fluid) The first thing we did was Gamma Knife Surgery which is a targeted radiation. The Gamma knife was successful, but caused quite a bit of swelling in my brain causing a small seizure and very confused/drugged like behavior. (Did you know that – at least in this state – if you have a seizure you can’t drive for 3 months!!! - This really but a damper on my summer!) So, steroids were added. Meanwhile my doctor needed to get the Tarceva to my brain – so we tried a “Tarceva push”. That is, instead of taking 100mg daily, I took 1500mg one day each week (we called it Tarceva Tuesday), with the hopes that with so much Tarceva in my system , SOME would get to my brain. After two months of this Tarceva push, tests showed that although there was no more growth in my brain, there was new growth on my spine and ribs.

Thankfully my oncologist always has another plan. Now we have gone back to Tarceva daily and added an infusion of Avastin every 3 weeks. After 9 weeks of this regimen, and 5 years as a Stage 4 survivor, my tests came back last week with no new growth, and everything else remaining stable or shrinking. God is great, my oncologist is wonderful and there is HOPE!!

I know this is a long story – but I want all of you newly diagnosed to know just that – hope. Five years ago today I did not think I would see my son graduate from high school, he graduated from college in May, 5 years ago next week I put away the Christmas decorations carefully, with notes to my family about who gave us each and where they went, thinking I had seen my last Christmas, and yet I have set them up once again. Five years ago I was terrified, sad, confused, cancer was all I could think about. Now, it is no longer my first thought in the morning, nor my last before I fall asleep. I volunteer with children and animals at a rescue farm, I spend time with my family and friends traveling into Boston and New York, I go to the beach as often as possible. I have seen babies born and friends die in these five years. I have lived. I have survived.

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Janet, thank you so much for this. I know what an effort it must have taken to put it all down. I've been trying to get myself to do it for years. We joined this site close in time to one another and that always makes me feel like I have a special bond with a member. That and the fact that I've always been so jealous of your work at the rescue farm lol.

I really needed to hear your story now. I've been worried about you especially since I'm not on FB much. I know you had a rough summer and am so glad to hear you have such a competent oncologist who just helps you over hurdle after hurdle.

Thank you again and have yet another of many Christmases to come.

Judy in KW

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Hi Janet, Wow such a inspirational story you have. There is probably someone reading it right now who is also terrified,confused and did I mention terrified the same as you me and all the others were when we joined this club. After reading your story, I hope they are filled with hope and are able to enjoy the holidays. I also wish you and your family the same.

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Oh Janet.................I have just now ready your entire story. You, friend, are one wonderful lady. Your story and mine actually parallel one another in many ways. I agree ~ hurray for second opinions and FOURTH opinions too. I relate to your not thinking you would be here for one more Christmas. Me too! And you are correct that nobody can know the feeling we both had unless one has lived it for themselves. So for this holiday season I will toast you and hope we become forever fast friends. Thanks for the story of hope. May we both celebrate so many more Christmases 'together' that we lose count of them.

Kasey

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Janet,

Thanks for sharing your story. Your story hits home for me in a different way. My dad was just dx early Dec and when we had Christmas I know it was in all of our heads it could be our last. My dad is getting tested next week to see if the mutation will work. Keep your fingers crossed. Your story brings hope and gives me some comfort. I am glad to see that people like you can fight. I am going to save your story and send it to my dad when he gets down.

Matt

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  • 1 year later...

Hi Janet, You are such an inspiration of the awesome human spirit !!! Thank you for the courage to share your story.

I'm glad you have come this far and are such a great story teller too :)

I really wish my mom (dx with adenocarcinoma last month) could gather the strength to get on this forum and draw inspiration from all you wonderful people. Sadly her diabetes has made her eyes weak and she is constantly tired from chemo 1 and now chemo 2...But I'm still gonna try with her.

Wish you the best and many more 5 years to come. May God bless you !

Sent from my iPhone using Tapatalk

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Hi Janet,

Thanks to the buddies here,posting to your story,and what a remarkable one it is,I noticed only later it was a post you had made last year,and yet I must have missed it then,since I had made no reply to it.May you continue with your survivorship for many many years to come,you are a super example to survivors everywhere

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  • 2 weeks later...

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