My cancer journey so far!

[curlysue50]

My name is Susan I am 52 years young. I am a wife, mother of 2 beautiful grown daughters and grandmother to a 4-year old grandson. I was diagnosed August 9th, 2011 with NSCLC adenocarcinoma. My left lung was completely collapsed and the bronchus obstructed. There were also nodes in my right lung. After CT scans, MRI's and PET scan I was also informed I have mets to my brain, bones ( ribs, spine, hips and legs), liver ( large tumor and many "spots"), and my left adrenal gland.

I had a chronic cough for about 3-4 years previous to this. Had been diagnosed a couple of times with severe bronchitis, but follow up x-rays were never performed. I am a never-smoker. I fall of 2010 I started to experience shortness of breath. Not able to do things I had previously been able to do. Walking across my yard or going up 2 or 3 steps into work became a challenge. My primary care doctor was very focused on getting my diabetes in control, which was becoming very difficult. She prescribed an inhaler and Prilosec to try and treat the chronic cough.

In February 2011 I was coughing violently and started vomiting several times a week. And then daily. At my 2 month rechecks for my diabetes, I begged my doctor to help me with my cough and told her of my repeated vomiting. She told me the Prilosec sometimes took 6 weeks to help with the cough which she felt was being caused by acid reflux. Two months later I was coughing so bad at my doctor appt that the nurse became concerned and how long I had been coughing. I told her several months and she took my temp. Low grade fever. Doctor listened to my lungs and sent me for an x-ray. Bronchitis. Antibiotics. Prednisone. Still coughing and vomiting. This was end of April. Doctor prescribed more antibiotics, more prednisone ( which was really making my blood sugars out of control. Finally, she sent me to a pulmonary specialist. He prescribed a steroid inhaler and set an appt for a follow-up x-ray. That night at home I passed out and fell to bathroom floor. I was home alone and called 911. I was okay by the time EMS got there, but they suggested I go into ER. I chose not to take the ambulance ride, but waited for my husband to get home from work to take me.

After 2 CT scans, they scheduled a bronchoscopy for the next morning. I was admitted to the hospital. August 9th I met with my pulmonary doctor and got the biopsy results. LUNG CANCER. Adenocarcinoma. I had him write it down. This was all new to me. And terrifying. I got a referral to the University of Michigan Comprehensive Cancer Center. All my family lives in Ann Arbor and I had lived there for a number of years.

After more CT scans, PET scan and MRI's they determined the Mets were much more extensive than they had thought they would be. I had stage IV lung cancer. I was to begin what would be 4-6 rounds of carboplatin/taxol chemotherapy. Along with Zometa to try and strengthen my cancer- ridden bones. I began to lose my hair after 2 weeks. I continued to vomit, lost almost all my appetite, lost taste, beginnings of neuropathy in fingers and toes, had severe dehydration, was hypotensive and passed out 3 times in succession one morning after my shower. I lost 12-14 lbs every 3 weeks. My CT scans showed cancer had become stable but was not shrinking. So, after 4 rounds my doctor and I decided the effects were not worth doing the last 2 rounds. I was to take 90 days off and come back to U of Michigan for follow up CT scan. I went home for the holidays on Thanksgiving weekend. I had stayed with my parents during the chemo rounds.

I had never really stopped vomiting. I went home to try and prepare for a Christmas with my girls and husband in the north of Battle Creek. I did not feel great and started to feel worse and worse. It had been just over 30 days since my last chemo. I managed to get through the holidays. Pain in my hips and back was so bad I could not sleep at night. Even with oxycodone. I made a call to my doctor and the weekend of New Year's Eve was admitted to the hospital. More MRI's this time full spine and brain, along with body. The cancer was spreading and growing again.

After my chemo had ended I had been tested for the ALK gene translocation. Xalkori/crizotinib had been approved for use outside of clinical trials. It is a genetically targeted chemotherapy capsule that works on killing only those cells with that specific gene mutation. 45 out of 50 of my cancer cells from my biopsy had the ALK (anaplastic lymphoma kinase) mutation. I qualified to use the Xalkori to treat my cancer. I could take it at home twice a day. I have had no significant side effects from the Xalkori.

After 2 weeks I had a day without vomiting. It was so significant that I marked the date on the calendar. NV (no vomit) January 30, 2012. After about 2 weeks, I quit marking the dates. I am still not vomiting. At 8 weeks I went in for CT scan. My left lung has re-inflated and is functioning Bronchus is reopened. There was still a small amount of fluid near bottom, but my oncologist felt it would resolve. Nodes in right lung are gone. tumor on adrenal is gone, although there is a slight thickening of organ. Tumor in liver is significantly smaller. Many of the enlarged lymph nodes are normal size. All and all the report came back as significant improvement. I go back in 3 months and they are going to do a more extensive CT scan with contrast. Oncologist feels we will continue to see improvement. He was very pleased that I responded so well to the Xalkori. I feel very blessed.

At my first appointment my oncologist told me they could not cure me, just treat me. And hope the treatments could buy me some time. I am not able to drive again. I can pick up a laundry basket, sleep through the night, bake, fix a meal and grocery shop alone. There are no promises given with any treatment, but the results of the Xalkori are more than I hoped. I know what it feels like to have your life slipping away. It is truly a miracle to feel alive again. I am struggling a bit trying to find a place for myself in the world again. I had worked full-time for many years, so being home, feeling good, and so much time to fill is a challenge. The rest of the world goes on. Once you have Cancer, it is always with you. Maybe it is not a neon sign every day, but even a small note folded away in your wallet is something you have to keep in mind. Thanks for listening. It is good to know you all can understand what I have gone through and what I will continue to battle.

[RandyW]

do what my late wife did and pursue a hobby... she painted pictures..

[dianew]

What a journey you've had. You are a very tough lady. The fact that it took so long for them to diagnose you is a much too common story. I know they need better diagnostic tools for LC, but I think doctors should at least consider it sooner than they do, especially when the symptoms don't clear up right away. It seems to be very slow, but hopefully the word is getting out that everyone can get LC.

When I was first dx in 1998, I remember having a hard time adjusting to the idea that I had cancer and getting used to what I could and couldn't do The fact is once you have it you are never the same again. But I really believe in some ways it can be a good thing. I know I will never take a lot of the small things for granted - and am very grateful for every holiday, birthday, etc. that I get to celebrate. As Randy suggested, now may be a good time to do some of those things you didn't make time for.

Thank you so much for sharing your story. I hope you come back often to let us know how you are doing.

Diane

[carolhg]

Keep on keeping on!!!

Carol

[Joppette]

Hi Sue, (taking liberties here assuming this is your name)

What a story of courage. What an ordeal. I understood so much of what you wrote about. What struck me most at first was that my calendar was FULL of what I thought were important appointments, commitments, and things to do. Once I heard the words "you have lung cancer", and they began to outline the surgeries, treatments, rehabilitations, etc., I went home, cancelled all of those silly appointments, commitments and things to do. Nothing seemed important anymore, nothing except of course for the battle.

What you wrote here: I am not able to drive again. I can pick up a laundry basket, sleep through the night, bake, fix a meal and grocery shop alone. There are no promises given with any treatment, but the results of the Xalkori are more than I hoped. I know what it feels like to have your life slipping away. It is truly a miracle to feel alive again. I am struggling a bit trying to find a place for myself in the world again. I had worked full-time for many years, so being home, feeling good, and so much time to fill is a challenge. The rest of the world goes on."

The world does go on. But I believe that even the tiniest things we can do are important in our tiny part of the world. I have not been able to drive for a while, but with time, I've found a lot of things to do at home that are fulfilling. I've picked up a couple of quirky hobbies. Check out this web site. http://www.homemadesimple.com/en-US/Hom ... /Home.aspx

I've never been a crafty type person (still am not) but found some fun stuff to do to make little corners of my home, better little corners of my home. That gives me a great sense of satisfaction! But also remember a laundry basked raised, is someone in your home getting clean clothes. That is important and good.

I almost feel sorry for the people that never had to face life at our level. They rush, rush, rush and can't stop to consider the small things. They are too busy rushing. And yet? If they ever face a diagnosis like ours, they will do what we did, erase that calendar, simple it down, and learn the things that are important. I think the small things are important.

I loved your story. I hope to read more here. Check out the Just For Fun Off Topics, Daily Air here. It's just a place to check and chat up your day a bit. I've made some lovely friends there. I don't get there every day, but do like that forum.

I only live about 65 miles from you. I'm just North of Grand Rapids! So it's nice to meet a fellow Michigander here! I sign my name Judy in MI, because we have another Judy here from Key West, and she signs here name Judy in KW or KW Judy. LOL.

Anyway, welcome. I've taken up gobs of room here. LOL.

Have a good day.

MI Judy

[curlysue50]

I really appreciated hearing replies from others who can truly understand what it is to have lung cancer. Family members love and support us, but they are not walking in our shoes. My three sisters are driving me to the Hope Summit sponsored by Lungevity this weekend. I am excited and nervous at the same time. It is the first long trip for me since my diagnosis. I have been doing well, but that could change at any time. That is the uncertainty of cancer. It will be fun to take a road trip with my sisters.(I am the oldest) and have some time without husbands and chldren to share and visit. And then the Summit will give me a chance to connect with other survivors! I am hungry for information and to hear how others live with their disease. My world was turned upside down and I. A m still in the sorting process. I am hopeful the Summit will help me make some decisions for myself, armed with more knowledge. I will let you know how it goes and maybe some of you will be there!

[Bud Baker]

Looking forward to seeing you there!

[Janet B]

That is an amazing, story. It made me so angry reading it thinking of all that you went through just to get a diagnosis! Doctors HAVE to start thinking about lung cancer as a possibility first, rather than as a last option. You sound like an amazing, strong woman, I can't wait to meet you at the Hope Summit!

Peace - Janet

[eric byrne]

Hi Sue,

Thank you for sharing your amazing story,looking forward to meeting you at the Hope Summit.