curlysue50

May 25, 2012

I started my day with a visit to town. As I drove by the garden center, some gorgeous pink geraniums caught my eye. I usually put lots of pots and baskets on my old fashioned front porch. I also, usually do all the pots myself, which takes lots of potting soil and annuals. I was going to skip the expense and effort and leave my porch bare this year. And then I spotted the bright colored, ready to go ivy geraniums in hanging baskets and they were on sale. I bought some for the shepards hooks in front of my porch and side entry way. I got them home and hung them up before I even went into the house! My heart skipped a beat, they are so beautiful. My "normal" moment for the day. I am not quite sure why I thought I needed to withhold the pleasure of fresh, new annuals this year, but so glad I allowed myself this joy.

Jim and I are going to the cottage this weekend. He is going to do some work and I will do whatever I want. We hope to get the hot tub going and the patio furniture out. I have an umbrella to cover the hot tub and the table, to keep the sun at bay. It may get up to 90 degrees this weekend in Michigan.

I hope you call have great weekends. I told my husband this week that I would be talking about you all as friends and would introduce you to him through the stories and thoughts you all share here. I hope that is okay. Somedays, my contact with my fellow survivors, here on the LUNGevity site is the only contact I have, with anyone all day. (other than my husband at at the beginning and end of the day, of course. I already think of you as friends.

Susan

May 24, 2012

I forgot to answer Janet's question on Zometa infusions. I did receive them during each of 4 rounds of taxol/carboplatin chemo, but not since I finished end of October 2011. Looking back I am not sure how long they thought I would last and I did not tolerate the chemo well. I am only my oncologist's second patient on the Xalkori. His first patient did not get the significant response that I have had. I am sure we will be discussing what happens next after he sees my CT scan scheduled for June 11th. I will see my oncologist the 15th. And hopefully the orthopedic surgeon in the same time frame. They did not call me back today, but I will call again tomorrow. Then back to my oncologist for help scheduling if I can't make an appt on my own. I wondered about more Zometa, too. Hopefully I am in good enough shape to try and get my bones back in shape.

I am working on it!

Susan

May 23, 2012

Thank you all for the kind words of encouragement! They are so appreciated. I have always been tough on myself, to perform to be strong. Having cancer and asking for help when I need it does not always come naturally or easily for me. A matter of pride, I guess. Cancer is my opportunity for growth in this area. (Even though I may go kicking and screaming through the lesson.)

I found my source of strength and motivation today by sharing on this site AND by stopping in to see my friend Judy whose husband died of lung cancer and she is a breast cancer survivor who lost her upper left lung to a metastatic tumor. I have seen her at her work, she works at our tiny local grocery store, but I have not stopped by her home. I am a bit shy about stepping in announced. Most of my friends love it when I do, though. It was great to talk and share with a fellow survivor! We could talk about things not appropriate to share while I check out my groceries. She sent me so many nice cards while I was going through chemo. I had worked with her at the grocery at one time, so we have known each other for about 15 years. We never dreamed we would have cancer in common. Anyhow, we decided we are a couple of tough old broads! And I feel inspired to keep trying to do the best I can every day.

May 23, 2012

Janet:

I have had the same sort of migraine Ginny describes. Mine started way back in junior high.( now that is waaaay back). I have had years without them and then they will reappear. Stress is usually a factor. I take peace in that they are short in duration and not very painful. From what I understand, it has something to do with either the optic or retinal nerve disturbance depending on exactly what your specific symptoms are. Try to relax and let it run its course. I have talked to every doctor I have had over the years and no one has gotten overly concerned. You might want to talk to your doctor to ease your mind.

I hope you have a lovely time with your family. Don't fuss too much they will love seeing you no matter how clean the house is. It does not matter as much as we think it does! Just Enjoy!

Susan

May 23, 2012

Judy:

Good luck with your final chemo tomorrow. I will be thinking of you! It takes a lot of courage and strength to go in for each round. I wondered each time where I found it in myself to do it. You are strong and this will be your last one! Yay!

I loved your picture of the herons nests. We had one on our pond at our cottage a few times and I see them fly out of the woods/swamp across the road from us here at home. I saw one catch a fish once at the base of a dam on a river in Ohio. I have never seen them nesting.

Traverse City is such a beautiful spot! If you are up to it, it would be worth the drive. All the gorgeous views along lake Michigan always heal my spirit. I will be further south, between South Haven and St. Joseph. My husband is going to lay ceramic tile and I am going to relax and enjoy the warm weather predicted. I will also go somewhere close by where I can see that big, blue Lake Michigan.

May 23, 2012

I have been feeling pretty good. Not completely back to my old normal self, but good for my new normal self. My family has been encouraging me to stay busy and offering suggestions.

Some of the wonderful folks on this site have also offered me ideas on how they filled their time. I have been feeling a bit unproductive and even bored some days. So, I started looking for something. I found a couple of classes at my local wellness center. One was a light exercise class especially for cancer survivors who are currently in treatment or finished with treatment. The other course was a beginners Yoga class. Each was only once a week, in 7 week sessions for the summer. That would be perfect! Or so I thought. I decided it would be smart to contact my oncologist to make sure such exercise would be safe for me.

His reply was a reality check for me. "Since we know you have multiple lesions at risk for pathological fracture, you should probably have a follow up appointment with an orthopedic surgeon to decide what sort of exercise is appropriate for you." I do have stage 4 adenocarcinoma. I have mets to much of my spine, many ribs, hips, and femurs. I have been doing well on Xalkori, but I remember my oncologist telling me even though at my 8 week check up that bone mets were stable, they did not know when and if they would recalcify. It is easy to forget the severity of your condition when you start to feel so much better. I know I have bone thinning, but since I have been feeling pretty good, have felt almost a "pressure to perform", if that makes any sense. Like I can carry my own heavy suitcase, or lift that extra heavy load of laundry. I felt so helpless when I had to ask for help during the period before my diagnosis and during 4 rounds of chemotherapy last summer and fall. I was constantly pushing myself to try and "get better" and do more for myself. It is really tough to admit there are just some things I may not be able to get back. Some things I might always need help with. It makes the CANCER seem very real again. I have not had any tears in awhile, but when I read my doctor's email, I could feel them well up. I guess there has to be an acceptance of my reality and it is okay to feel sad. It just really stinks.

Thanks for listening, I needed to unload on people who would know what I am talking about. Sometimes even when family members are well meaning, their words of encouragement seem so unrealistic. When you don't have "multiple lesions at risk of pathological fracture" yourself, it must be easier to see the positive side. I am sorry if I sound bitter right now, but I am. I know I will feel better eventually. And maybe after my orthopedic appt, the news will be better than I think. But, for this moment, I am really feeling the loss of my normal self. I will try to get used to my new cancer self soon.

Susan

May 17, 2012

I think gardening and walking do qualify as exercise. All of ua are individuals and have different levels of energy, ability and interests! It is great that Bud can cycle, something he obviously loves. Sounds like Janet loves the outdoors, and flowers. Taking care of them, walking the garden center and planting all sound like activity to me. I have done some weeding and planting myself. I just have to know my limits. Cleaning out the kitchen cupboards is on my agenda, but I just haven't gotten there yet.

One of my sisters is also attending ASCO in Chicago. She works for SARC. Sounds like there is a lot of effort going into the cure for all types of cancer. Two of my sisters work in the cancer research field. And they were still stunned and shocked when I was diagnosed. It isugh on our families, as well as ourselves. Thanks for attending on the behalf of lung cancer, Katie B!

May 17, 2012

Janet:

Thank you for letting me know I am okay where I am right now. I am doing a lot of what you suggest, but somehow, and it know this sounds crazy, I feel guilty for not doing more. I, like you was exhausted at the Summit. My 3 sisters and I drove the 9 hours to DC from Michigan and I walked to Georgetown with them Friday night after we arrived and got to sleep after midnight. Saturday night we took the night tour of DC. It was fabulous, but we got home at 11:30 pm and I am not sure when we actually slept. I so enjoyed myself, but I think I sometimes forget to allow myself a nap, or extra rest that my body needs. I have always pushed so hard and done so much. I forgot how hard my body must be fighting against the cancer. My chemotherapy drug is working every day to keep the malignant cells from growing. It is okay to take care of myself.

I live in a small rural town, so to do anything (besides go to the tiny local market in town) is about a 30 minute drive. But, I do go to shop, for excercise (walking around Target is excercise when 6 months ago I could only do it on a motorized cart), pick up groceries etc. I have a couple of good friends, who although they work full time, get out of work in the early afternoon, I have a 4 1/2 year old grandson and I will bring him over for the afternoon to play. When I get tired I take him home. He is so much fun, but very active. Last night I could not get him still enough for a picture, so I could only shoot video.

My husband and I have a cottage that we have been working on for about 5 years. Gutted it and remodeled on a budget sort of thing. It is on 10 acres of woods with sand dunes. About a mile in from Lake Michigan. I too love animals and we have had all sorts, including a cougar, which we heard twice, and my husband actually saw walk in front of our pond. We have wild turkeys which do their mating dance outside my bedroom window, deer, red foxes (one year we found a den of kits and saw them several times over the summer before they left the den, awesome!), coyotes and of course all sorts of birds. Bluebirds in the bluebird house, again this year. I planted all sorts of ferns, ornamental grasses, wildflowers and flowering shrubs. Last year I even finally got my red dogwood. We had hoped to someday retire to our cottage. My first visit back to the cottage after treatment was really hard. This place we had put so much into would no longer be a place I could retire. I would never see my dogwood grow larger and my azaleas and rhododendrons fill in the growing room I had allowed for them. Much of my life I spent planning for "when I had time to enjoy my life, later". Now I realize I was enjoying what I was doing, but not fully realizing it. So, much of how we deal with cancer is our attitude about what we do have and not what we don't have. I may not have all the time I had hoped for, but no one really knows what they have.

I have always liked taking pictures and may look into a camera that is not super complicated, but will let me play a little more with effects, and lighting. My oldest daughter is a wonderful photographer and does it as part of her job, as well as for fun. She is going to do some research for me and see if we can find a camera I can afford. And them maybe an online course or website that can teach me some of the basics of lighting and composition.

I have to admit I have already thought about attending Hope Summit again, next year. I was a bit afraid to plan that far ahead, but I think I would fly instead of drive and just bring my practical, "you need your sleep" husband. I loved having my sisters, but just barely kept up. Maybe there could be a quieter, not so active Saturday night activity for those that need some down time. Just sitting quietly and gabbing, sharing, in a relaxing setting and then to bed early.

I appreciate you taking the time to share and I will give myself time to adjust without putting on so much pressure. I have even bragged when I did not feel the need for a nap, even though I probably should have given myself permission to take one!

Take care, you are much appreciated!

Susan :mrgreen:

May 16, 2012

Eric:

Thanks for your reply! I worked for many years, too and my job when I was diagnosed, was a contract position which was subject to end 2 months later. So, I also do not have a job to go back to. What I take from your answer is that I need to try some things I may not have tried before, find the things I like and keep myself busy. If I am sitting around being bored, I need to give something a try. I may not like everything, but there is bound to be something out there for me. May not be an overnight proposition, but I need to get out there and do something! It sounds like you keep pretty busy now and you really seem happy! That is such an encouragement. :lol:

Thanks,

Susan

May 16, 2012

I am have some challenges with trying to find my purpose and place in life outside of my cancer. I am back from the brink with a stage 4 lung cancer diagnosis on August 9th, 2011. Xalkori the genetically targeted oral chemotherapy drug has made significant response in pushing back my cancer. My life should feel back to normal, but my cancer is not gone. It is just not having the devastating effect it was having on me physically. So, how do I learn to live my life without letting cancer color every decision I make? I have all kinds of time on my hand and all my friends and family are telling me to do what I want to do. To enjoy myself and live life fully. It is like starting from scratch. Being a college graduate again and deciding what to do next. I will always have cancer. How do I live my life without letting that fact take away my joy in living? I am having fun in my life. I have only been "back to normal" just over 3 months now. It looks like I have more time than I had originally thought when I was first diagnosed. ( Although, no one knows really how much time they will have left).

I attended Hope Summit 2012 and was so inspired to see the positive attitudes, love and caring among lung cancer survivors. I saw many people who have gone on with their lives and are living each moment with purpose. I am thinking this did not happen easily or automatically, but took courage and hard work to get to this point. I wondered if anyone had any advice on what worked for them? How they found themselves, even with their cancer, without letting cancer define who they are or what they are able to do.

I just seem to be having a tough time finding focus. I worked full time for years and had my little hobbies, but nothing big enough to fill all the time I have now. I have been staying productive, cleaning and sorting closets, giving away clothes that I just don't wear, organizing my house and doing all those things that get left undone when you work a full time job. Now I think it is time to do something for me. Something that uses my talents and abilities and will give me some satisfaction in my accomplishments. Not that I am putting too much pressure on myself. I want to fill my mind and heart and share that with my friends, family and anyone else that can benefit from what I have learned in my life journey so far.

I guess I have rambled a bit, but if anyone has any wisdom on the subject I would love to hear it. I heard Eric Byrne say at the Summit that he was able to get back to the person he was BEFORE his cancer diagnosis. Now that sounds positively wonderful. Because now I have the time to be that person AND pursue some of my heart's desires.

Have a wonderful day!

Susan Gamble

May 11, 2012

Judy:

I am a bit late to post to this, but I also had bad neuropathy to thumb and fingertips of both hands during my carboplatin/taxol chemo. I finished October 2011 after 4 rounds. Neuropathy got progressively worse with each round. It is now May 2012 and the"tingle"/loss of sensation is definitely fading. I still lose my grip once in awhile handling small objects (some larger ones, too), but I can sometimes forget about it because it has gotten so much better. Our bodies can do miracles in healing themselves from the tough times they go through with treatments. I hope you are doing better. Your encouraging words have been helpful to me!

May 7, 2012

I attended Hope Summit this past weekend. I am a bit shy in a crowd, but I did meet some amazing cancer survivors. I saw people that had been diagnosed with stage 4 lung cancer, like me, that were still here after many years and those who were going through chemo and just starting their their journey. I think the biggest impact on me can be summed up in those two words,"like me". Such a support and comfort to know I am not alone and those at the Summit could truly understand who and where I am.

The speakers and panels were wonderful. Full of information, compassion, and thought provoking ideas. My emotions have been pretty difficult to sort out and give attention to during the past 9 months. Many of the speakers spoke of things that touched my heart and truly made a lasting impact on me. I am grateful that there are so many people that have made it their mission to support and connect lung cancer survivors. I am very glad I was able to make this trip and attend this Summit. I did gain Hope by attending the event.

May 1, 2012

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 :mrgreen: 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!

April 12, 2012

I think I may have posted my story in the wrong spot! Sorry for the long "introduction". I also posted it in the My story forum, after I noticed. :lol:

April 12, 2012

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.

April 12, 2012