greensmythe's Journey with Non-Small Cell, Lung Cancer

Patient: Lung Cancer > Non-Small Cell

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Female, Age: 64, EGFR mutation positive: Don't Know

  1. 1
    over 4 years ago
    greensmythe's Avatar

    Diagnosed

    Oh No

    Just found out today and am scared! Everything scares me. I already got my first bill and it is over a 1,000 dollars. I am on Medicare due to a disability- but I know it will not cover everything. Frightened and overwhelmed. I have my first appointment with cancer doctor 8am Monday-November 12, I think.

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  2. 2
    about 4 years ago
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    Drug or Chemo Therapy

    I decided on the the right doctor for me at IU Simon Cancer Center in Indianapolis and began chemotherapy ( carboplatin, taxol, and avastin) yesterday. All went well, didn't have any wild reactions ( so far) and was so happy with the people at the hospital. One of my hardest issues was finding the right doctor and medical team to trust and I have found that team there. I will continue to write more about each experience as time goes on but wanted to touch base here becasue this is where I have found wonderful people who have given their time and wisdom to me, like Shoeless Joe Jackson, Harry, and so many more. It is hard to make these types of desicions when hit with such a tough blow. Thank heavens for the people here. Greensmythe ( April)

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  3. 3
    about 4 years ago
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    Drug or Chemo Therapy

    I was given carbo/ Taxol/avastin- the first two days were fine- just like the proverbial walk in the park ( harhar)- I then woke up at 2 in the morning on the 3rd days with horrible leg and feet pain, where i could not walk very well. As the day progressed and I took some ibuprophen I was better- but it was a struggle for the next few days- and then my steroid prescription went out and the fatigue set in- two or three days of this -lots of sleeping, hard to make meals and get pills to get me going- but obviously made it through. All of this began to wind down about Friday.

    Easy to Do: Not Specified
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Agree
    3 Comments
  4. 4
    about 4 years ago
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    Side Effects

    Losing My Hair You know, I never gave much thought to my hair. I was proud that it was still thick and I could wear it easily in a short cut- had a little gray, but that was to be expected at my age. I had stopped coloring my hair over two years ago. The blonde stuff that I had poured on my hair to lighten it up had become a drudge. I wanted easy and cool. So, I went natural and gray and it looked pretty good. Then I was diagnosed with lung cancer. I was tested for genetic mutations and was not a match- so chemotherapy was next on the treatment list. For me, it was chemo or nothing. I was not willing to roll the dice towards nothing and so my menu had one choice. I knew that hair loss was one of the side effects of the type of chemotherapy I would be receiving. I told my family and friends I really didn’t care. I was more concerned about what it would do to my body overall. But, as my hair began to fall, I realized it mattered much more than I had thought. Cancer Services of Northeast Indiana has all kinds of wigs, and coverings and I had gone there for some of the coverings. It is a wonderful place. I was glad I had thought ahead and gotten some hair coverings, a couple of turbans and a few hats. I had even gotten a wig-but wigs just aren’t me. Tomorrow, my daughter will come over and shave the rest of it off- it will be easier than having hair all over the floor, on my pillows and clothes, and in a vast array of other places I would have never thought to find it. Losing your hair is hard, but it is doable- and although it does make me sad- it confirms my determination that I am in battle, in the midst of a fight, and hunkered down in the trenches of a war that many of us are fighting every single day. Frankly, I thought this was as good a time as any to find my little friend- and heep tons of abuse upon him- but for some reason on this day I just didn’t feel like it.

    2 Comments
  5. 5
    almost 4 years ago
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    Decision Point

    19 Everybody Has a Different Story Just so DammitDolls don't get freaky and think I am trying to steal their very cool idea- just know I am using Dammit Doll as one of my own personal tools to fight cancer. It may not be too scientific or full of natural herbs, but, Dammit, it sure feels good going down! In 2007, I was diagnosed with a brain tumor that turned out to be benign. It had caused significant damage while it grew and took little bits of my brain as its resting place- but after the six hour operation and a couple months of recovery time- I came roaring back. The memories I had begun to lose were back, my vision was rapidly getting better and I was able to create again. I had a miracle. On November 12, 2012, after tests, CT scans, and a lung biopsy, the verdict was in- Stage IV lung cancer. What a kick in the XXX! I mean what a XXX kick in the XXX. One more time! What a XXX KICK in the XXX! For this little introduction, I won't go into how I was told- cause it was brutal,and I won't really tell all about the many steps I took after the initial diagnosis to find the right path for me ( still haven't really found it- but inching there slowly). What I am going to do today is introduce you to my friend Cancer! Dammit! He is the little pink guy at the left top of the post. Dammit is a doll that was sent to me by my sister after we found out I was negative for mutations ( woolly science stuff we will probably talk about later). In the beginning, when I first found out, there were terrifying moments of fear, anger, and anger, and anger- and deep abiding sadness. Those emotions flood me still on a daily basis- but I read one thing at the start that has helped me get through some tough days. I still want to laugh and make other people laugh so I made it my mission from early November on to find a good cartoon, funny quote or some other type joke that would help lift me up. It didn't matter how dirty, stupid, or off the wall- it just had to serve the purpose of making my lips turn upward. I have found so far that having cancer is the biggest mind game in town. I was told this by one of my cancer comrades. I probably can't outsmart it- but I can still grin evilly at the game. That is what CANCER! Dammit! is all about- I want you to follow me, help me laugh, and laugh along with me as the Dammit Doll and I traverse this foreign soil together. Also, remember as you read along with me- this will not always be a good time. I have already found out some awful stuff and tolerated them too. I have created CANCER: Dammit!!! for the same reason I came up with funnies everyday since diagnosis- so I can get a good laugh for myself and keep this suddenly upside down world in some sort of perspective. I expect to fail at this mission, repeatedly. I don't mind failing- I do mind not trying.

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  6. 6
    almost 4 years ago
    greensmythe's Avatar

    Maintenance chemotherapy

    Drug or Chemo Therapy

    http://battlecancer2013.blogspot.com/2013/05/climbing-mountain-in-dark.html

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  7. 7
    over 3 years ago
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    Decision Point

    http://battlecancer2013.blogspot.com/2013/06/why-i-built-blog-to-take-on-my-cancer.html Why I Built a Blog to Take on My Cancer Expedition Cancer is a journey, but you walk the road alone. There are many places to stop along the way and get nourishment – you just have to be willing to take it. Emily Hollenberg Being diagnosed with cancer is similar to being socked in the face flat with a very large and brutal hammer. When I received my diagnosis, I actually experienced a partial seizure, sometimes known as a silent migraine- I saw lights, and felt as if I had been physically struck. Of course, the idiot general oncologist who delivered the news was not too experienced. He was new at the clinic and apparently new at the whole concept of working with cancer patients. I found out later that he had just been retained at that clinic. Nice try, son- but you could have done better. As I walked out of the building that cold November day, I remember snowflakes falling as I waited for my son, Chris to go get the car, and oddly I felt numb. After a couple of days of numbness I began to try to figure this whole situation out. I reached out for support from the professional community for lung cancer in this city. I had lots of support from my family and friends, but they had their own lives, and I was damned if I was going to burden them with all of it if I could handle this on my own. I did find that the Northeast Indiana Cancer Services organization offered some help along the lines of hair coverings (I wasn’t there yet) a patient advocate ( who could help you by listening- and that’s a lot!) and a wonderful library of books, CDs, and other materials to help you understand what was happening. However, there was no lung cancer support group in this city and I knew I not only needed support for my specific type of lung cancer. I also knew I needed a lung cancer specialist. I became very frustrated and angry that I could not find anyone to share my woes with..;-) Eventually, I found a lung cancer specialist in Indianapolis at the IU Simon Cancer Care Center, and I found support online at Inspire.com and WhatsNext.com-but these types of sites are ok if you want to read worst case scenarios. Sometimes you don’t. Sometimes, just to get through the day, denial works. So, I began my blog and here’s why I did so. 1) Kept me on an even keel - When I began to blog daily, I found that I could work out my feelings, and keep note of the things that were happening around me. I am a professional writer, so the idea of writing these events were in some ways second nature. I began the blog around the same time as I had started treatment and so it helped me work through some of the worst effects of that experience. On the other hand, being a professional business writer, who often has to assume the voice of others (ghostwriting) sometimes made it difficult to find my own voice. 2) Helped me find support - It appeared that people read the blog, and I found old friends who offered up support, and new friends who were in the same boat who said they could relate to my experiences. 3) Kept my friends and family up to date. - When a person is going through chemotherapy it doesn’t ever seem to be a priority to let everyone know about their pains, aches, and victories, so keeping the blog and posting it let those who wanted to know keep up to date and it lifted that burden from me. 4) Helped others - During the time that I wrote most often –at 3am in the morning, (insomnia was a big challenge for me during chemo) or when I was experiencing other problems that got in the way of chemo (after my first chemo treatment I ended up having a urinary infection and later had to have a root canal). None of these events were what I would call a party, but other people wrote to me and told me that it helped them to see someone writing the truth of their experience. 5) Kept me engaged in life - Cancer is the biggest mind game that you will ever encounter and unless you find a way to keep in the game of life, it can suck you into its web with negative feelings, worst case scenarios, and SWAGS (Scientific Wild XXX Guesses) so writing my blog kept me in the game of life and forced me to continue to do what I had always done as a participant in life, rather than just a survivor of life. After I went into remission, I stopped writing in my blog for a while. It felt strange, and as if I had lost part of the challenge-even though I knew that the battle was not over. Now, I am on maintenance Avastin every 21 days and have found there are challenges still. There are also leftover problems from the chemotherapy. I still have neuropathy, I have gained weight from the steroids that was prescribed during the chemo, and I am working towards getting myself active again. I am still writing, and I am still taking care of my grandsons. Once, I asked a group on LinkedIn that discussed keeping a journal if they thought there was much difference between that and keeping a blog and of course they had their opinions. Most felt that keeping a journal (since it is for your eyes only) can help a person get out the more gritty parts of an experience whatever it may be. I agree. But, this blog has saved me in all the ways I mentioned and more. It made me realize that even when times are dark and I am filled with pain and anger, there are still my words to tie me to the world. And a joke now and then doesn’t hurt either!

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  8. 8
    over 1 year ago
    greensmythe's Avatar

    Remission

    Celebration

    for the past 11 months I have been participating in a clinical trial for an immunotherapy drug for non small cell lung cancer. I have remained stable and in partial remission the whole time. My general health is great and the side effects are minimal compared to chemo -

    11 Comments
  9. 9
    about 1 year ago
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    Clinical Trial

    Was on clinical trial for immunotherapy drug for lung cancer. Underwent 26 infusions over a period of one year. A slow progression had propelled the change to this treatment plan. During the trial I remained stable with some improvement throughout the year and was considered in partial remission. At the end of the 26th infusion I was randomized out of the trial and now am being monitored. I am still having all the same side effects I had during the trial. On January 8 I will see the nurse practitioner and they do blood work and check me out.

    0 Comments
  10. 10
    about 4 years ago
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    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment