A Helpful Second Opinion and First Poem
If you were to ask me years ago when lung cancer month was I would have said "I have no clue." I know now because 9/3/13 I had the upper left lobe of my lung removed, it had a tumor that was 4.1 cm. diagnosis "adenocarcinoma." Shocked? Yes in some ways because I went to see my primary care doctor for a sinus infection. He sent me for a chest x-ray to identify something he was hearing and it was my tumor.
A long time smoker, I have had people actually say sue the cigarette company, please do not insult my intelligence I can do calculus but I can't read or understand the warnings that are constantly put in your face? I did however smoke my last cigarette at midnight before my surgery and have not had one since. (Although I would love one every waking hour). So I played the wheel and lost. I had my first chemotherapy 10/13/13 did great for 3 days and then a tidal wave, if a friend of mine had not come at my beck and call I probably would not be typing or still be on this earth. Again my fault, not intentional I hate to ask people to do things for me, I would rather do for people, but I just kept thinking it can't get any worse and then it would. Whisked to the hospital and an 8 day stay, where I swore off chemo of any kind. Slowly I got better and happily I am writing this from home. My doctor is changing one of the drugs so I will give it at least one more chance, and if I get sick this time I will go to the hospital before I hit rock bottom. I love to write and so this month I am going to put different things about lung cancer, from a patients view. Hoping it will be cathartic and informative.
That is my story...compacted. I will say people who have any kind of cancer need constant support. I am sure I am not the only one on a daily basis who has a mind that wanders to the most unkind places. I am very lucky I have friends who want me to continue to be with them, and are willing to do about anything to make sure I do what I need, make me laugh instead of cry, and love unconditionally. Yes I have lung cancer and I am in the fight of my life but I am not alone, and next year in November I hope to be able to say "I am a survivor of lung cancer."
After my first chemo 10/2013 I had another in November that again put me in the hospital for a week I was so sick. My last chemo in this round was 12/2013 in the hospital for Christmas 2 weeks to be exact. My visit to my oncologist in 1/2014 he stated we were stopping chemo it was damaging the rest of my body and my scans were clean. My scans remained clean all through 2014, however I was not getting my stamina back like I was before but was grateful I was cancer free. Note here: chemo brain is a real issue for us that have had chemo, forgetful, sometimes emotional may be with us forever. Another word scanxiety this is when someone is having scans when they have been diagnosed and they have to wait for results. Ask your doctor if you can get your scans in the morning and see him in the afternoon. A little wait but not like waiting a week.
January 2015 scan and when I see the doctor he tells me I have a tiny tumor in my right middle lobe and 2 lymph nodes. He states we will watch it and I will have another scan in July. I tell him about a lump on the back of my head, he never looks at it and blows it off as nothing. In hind sight I wish I had thought about a second opinion. In May I had been sick coughing I went to my primary care and he ordered a chest x-ray. He called me later gave me the results and then sort of hem-hawed around and I asked him if he saw my tumor, relieved he said yes and I told him my oncologist knew about it. He said "Cyndi it is bigger." I asked him to call the oncologist and the oncologist said we were waiting until the scan date. Again second opinion?
I had my scan in July and then had my appointment with the doctor He said we would watch the area (my lung) until my next scan, never mentioned the fact it had grown again. I spoke about my head he again never looked and said if I was concerned to see a neurologist. I attended my LiveLung support group which was started by Dusty Donaldson and is the first Wednesday of each month. That month we had a cardiothoracic surgeon speak, when we finished I spoke to him about my illness and he suggested.......a second opinion. He gave me some names and said he would get me an appointment if I decided to see one. I called him the next day and gave him my choice and true to his word he called me with an appointment the next week on Tuesday.
The next Tuesday scared to death but accompanied by Dusty we went to Wake Forest Baptist Hospital in Winston Salem, North Carolina. New hospital, new doctor, new everything. I had blood work done and then the time came. "Hello Mrs. Price my name is Dr. Petty.............................
Dr. Petty came in and introduced himself and then sat down to discuss my illness as well as my treatments. He had my chart and a copy of my CT scan. He sat to the left of me, he listened, he was engaged in the conversation. I felt "safe" for the first time in a long time. He added some medications, ordered a new chemo drug and an MRI on my head. (He made me feel valid) He gave me a time frame 18-24 months. I cried. In the next week I had my MRI and returned to his office the next Tuesday to hear results and get my chemo. My lung cancer had metastasized to my brain, however it was not in the tissue, it was in my skull. Radiation to be given to my skull and my new chemotherapy that day. I had to see the radiation doctor which I did and was told I would have 10 directed radiation treatments. I started my radiation (1 a day for 10 days) and half way through I had a reaction to the chemo like I did before and was admitted to the hospital for 6 days. I finished my radiation it helped with the pain. The next month I had my chemo....again in the hospital. The next month I had chemo and this time when I was admitted, I was anemic and a plethora of other problems. My doctor said "no more." I started crying. So this is it I said to him, I don't want to die I have things I need to do. That is when he said we are not giving up we are going to try something new. It is called immunotherapy. You are given the drug and it goes in and has boot camp and teaches your cells to fight the cancer.
The new immunotherapy drug is called opdivo. I read the information I was given and yes I saw the ad on TV. All I want it to do is help me live, without the horrible side effects I had with chemo. I never have enough potassium who knows where it goes but it has been going for years. So during my treatment they typically give me IV potassium. I elected 2 IV's because potassium will burn horribly if it the drip goes to fast - usually 2 hours per bag and opdivo takes about an hour. When my treatment is complete I go home. I feel fine. The next day I am fine. No upset stomach, no feeling like I am going to pass out. I am digging the opdivo. I have this treatment every 2 weeks. There is a rash that some people get and yes I got it and I still have it. It is only on my legs, it is not cute but no itching, I just have to be careful shaving. The other issue I have had is fatigue. I am not talking about I need a nap- hours of sleeping I will get up eat something and go right back to sleep. I wish my Mom and Dad were here, I was a hyperactive child and I only slept about 5 hours a night, boy would they be surprised.
The tumor in my lung is not gone but there is nothing new and it is stable. Unfortunately chemotherapy does not cross the brain barrier (I have read about a new drug that they think does cross it and will talk to my knight in shining armor Dr. Petty when I go back, he is very patient with me) so radiation or surgery is the accepted practice for now. At this time I am still on opdivo every 2 weeks. I still have the rash and I am still very tired. I have been put on thyroid medication because mine was not working well, my guess the chemo laid it to rest. Thyroid medication as to be raised slowly so I hope when it is right I will not be so tired. I have pain from where the tumor is on my right side, back of my head down my neck and then out to my right shoulder. Sometimes it is excruciating, sometimes just annoying and I have headaches, but I have medication to take and most of the time it works.
This is the first poem I wrote about my cancer:
So it happened to me,
I did not think it could.
A regal beast,
Invaded my personal space.
Found by accident,
Destroyed on purpose.
Now trying to rebuild,
A body carved and sliced.
Breathless, weakness, and pain,
Is this the road to insane?
Smiles are lost in the journey,
Struggling to maintain balance.
Is the beast waiting to strike...again?
Tired of the pain,
Exhausted by the tears,
Quietly I would like to step out.
The world will not stop for a minute,
Not even a minor hiccup.
Professed, expressed, reached out,
The masquerade of serenity.
The internal discord,
Slowly getting out of hand.
No longer strong enough,
To prevent the take over,
Time is not on my side,
And I don't care anymore.
Have you had biomarker testing done?