Cancer doesn’t discriminate. It doesn’t have favorites and it surely doesn’t care if you want it or not. If you have something more important to do or big plans in life. Cancer comes and cancer takes over, but the good news is that cancer does not define who you are. It does not take away your hope and it will never take away your love of life. If anything cancer has given it back, opened our eyes and made us see that life is surely worth living and definitely worth fighting for. – Adrienne
This is a continually updated post as I share with you my mother’s journey. I am hoping this helps others going through lung cancer or their loved one.
When we found out that my mom had lung cancer it was like the world stood still. You think that you will be prepared if someone you love gets it, but you really don’t know how you will react. I wanted to use this post as a way to help others who may be going through it with a loved one, or has been diagnosed themselves. This is a post I will update often to show the progress, treatment and my mother’s battle which we are positive will turn out okay in the end. The trouble with cancer is no one can really explain to you what to expect. I hope that my post will help others and also please feel free to use the comments section to share your story with lung cancer or ask questions. I will try to answer them as best as I can based on what we are going through.
When we got the news I was not even sure how this would all work or how to answer certain questions:
What would the treatment be? What does small cell vs. non-small cell mean?
What does the “stage” of cancer mean? What is chemo like and what will it do to the body?
This is my mother. A woman so strong that I always thought under her clothes she had a super hero cape. She could sweep me up in a single bound and make fears and tough times go away. It was devastating to learn that something was happening to her, inside her body, that she had no control over. Over the summer my mother had developed severe pain in the shoulder blade area. The pain was mild but lingering. She thought perhaps she pulled a muscle or pinched a nerve while doing odds & ends around the house or perhaps while lifting and bending while tending to her garden in the backyard. In July and August she started to see her primary care doctor to figure out what the pain was from. She went for many tests and it slowly got more persistent. After weeks of no relief she went for a scan of her back and they detected what appeared to be a sizable mass on the apex of her left lung. At that point her doctor sent her to Sloan Kettering Cancer Center in NYC to do some more tests. She had a CT scan done, scans with contrast, PET scans and a ton of blood work. The tests and trips into Manhattan were grueling, long and stressful. She was dealing with constant pain and was forced to sleep on the couch in an almost upright position in order to remain comfortable.
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How we learned the news that my mom had cancer 20104
It took my mom almost 2 months to tell me how bad she was feeling. Like most moms she kept it to herself and didn’t want to “worry everyone” which is what moms do. Finally she told me the news by sitting on the couch, breaking down in tears and showing me all the test results. This was the Friday before her birthday and also the Friday before she was scheduled to go to Sloan again for a biopsy procedure. She realized at that point this wasn’t just a pinched nerve but a mass that was a tumor, cancerous or not, but that they needed to go in and take samples of the tissue to diagnose if it was cancerous and what stage of cancer. I knew right then, when they mentioned Sloan Kettering it was cancer and it was lung cancer. I didn’t cry, we just hugged and said we would wait to see what the results said before we got ourselves even more upset over it. I took off work that Monday to be with her because she was scared. I didn’t want her to go into NYC and go through the biopsy surgery alone or without me by her side.
The Saturday before her surgery I took her to the hair salon for a day of pampering; to get her mind off of things and to give her a new outlook and look. She felt pretty she told me, she never treated herself her entire life to getting her hair colored professionally. I wanted her to feel beautiful and confident and know that she did deserve.
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3 tests my mom had done at Sloan Kettering to get her to the point of her biopsy:
- MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body, such as the brain. This procedure is also called nuclear magnetic resonance imaging (NMRI).
- CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, such as the brain and abdomen, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs ortissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
- PET scan (positron emission tomography scan): A procedure to find malignant tumor cells in the body. A small amount of radioactive glucose (sugar) is injected into a vein. The PET scanner rotates around the body and makes a picture of where glucose is being used in the body. Malignant tumor cells show up brighter in the picture because they are more active and take up more glucose than normal cells do.
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September 8, 2014 – The day of mom’s bronchoscopy and lung biopsy procedure (Sloan Kettering Cancer Center, NYC)
The morning of my mom’s bronchoscopy procedure we heading into the city early. Since she was going to be put under anesthesia she was not able to eat or drink all day. They were supposed to do her biopsy around 330 but she didn’t get brought in until 730pm at night. As you can imagine she was exhausted, hungry and thirsty. Since they needed to look at the inside of the lungs they were going to do the bronchoscopy through the mouth, down into the lungs but for her actual biopsy they were going to make a small horizontal incision in the area near the middle of her collar bone and go in that way to take samples (this was called Mediastinoscopy ). She was in surgery for almost two hours which scared us as we thought it was only a 45 minute procedure. They also place a port in her chest which is meant to be a portal for blood work to be drawn as well as IV or chemo to be inserted to. You can’t see it above the skin but it is inserted right into the blood vessel so medicine goes right into the blood stream. They said this would be better for her as she started treatment so they didn’t have to poke her in her arm a million times and in a million places.
As she was in recovery and before we could see her the doctor took me and my step father into a room to discuss what they saw. He told us they did find cancerous cells/tissue. They also said that they saw cancerous cells on some of the lymph nodes. They did not find anything in the right lung, but that everything was contained to the left lung. The tissue would be sent to the lab and a pathologist was going to have to test everything and would have results in a few days. The good news is the cancer had not spread outside the one lung which was a good sign, but since it has spread to lymph nodes we do have to work quickly to start treatment. Mom came out of the procedure and was groggy, tired and foggy. They offered to let her stay the night since she wasn’t done with all of this until 11pm at night. She didn’t want to stay in the hospital, so we went home. She slept that night and in a few days we would hear from the pathologist about what the results were and the course of action would be.
For 3-5 days after the bronchoscopy my mom had irritation in her throat from the tubes, had little to no voice (hoarse voice) and had a hard time swallowing food. It went back to normal after about five days.
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September 16, 2014 Meeting with the Oncologist (Clara Maass Cancer Center)
Since we live in New Jersey my mom wanted to do her treatment in the Clara Maass Cancer Center which is in Belleville, NJ. It is only about 25 minutes from where my mom lives so it would be more convenient to do than going into NYC everyday. Today she met the oncologist who was going to be in charge of her treatment. She also met with her radiologist and the nurse practitioner. They asked for her CT scan and PET scans to be sent over from Sloan Kettering since they needed that to create her radiology treatment plan. The oncologist told her what stage cancer she was, which is Stage 3A lung cancer and it is non-small cell lung cancer.
Stage 3A: Cancer has spread to lymph nodes on the same side of the chest as the tumor. The lymph nodes with cancer are within the lung or near the bronchus
Now that we know the stage we know the course of treatment. Her treatment was going to be radiation 5 times a week (Monday to Friday) and chemotherapy one day a week. This would begin the following week. My mom had to meet with the radiologist for a consult to go over everything to expect, to make a cast or mold of how she would lay each time she went in for radiation and to answer her questions. She also had to go in and meet with the nurse practitioner to discuss chemotherapy and answer questions. The oncologist is the one to determine overall the plan she was going to follow. His goal was to do this treatment for 5-6 weeks and get the tumor to get smaller to remove via surgery. We were happy that they were fast tracking her to start treatment right away.
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Week of September 23rd: First week of treatment (radiation & chemotherapy)
During the first week of cancer treatment my mom started her daily radiation every day. She got picked up by the shuttle service provided by the hospital and one of us would pick her up after she was done. Radiation therapy uses high-energy radiation to shrink tumors and kill cancer cells . The radiation went quickly, less than half hour. She was still very much in pain in the area of her back where the mass/tumor was and she was having a hard time sleeping. The chemo the first week was okay, she just felt tired a lot but still had a very good appetite. No hair loss, no real visible side effects other than wanting to sleep a lot. She was also on pain medicine to control her pain from her back. Her pain though was increasing and she was not sure what was going on. Her chemotherapy takes about 3-4 hours to complete and is a slow drip through an IV. While you are doing chemo you can read, sleep, eat, walk around, etc. For radiation you are in a mold in a room and cannot move while they do the treatment.
Week of September 30th: Second week of treatment (radiation & chemotherapy)
The second week comes and goes and it is much of the same. No real major sickness. She had a great appetite and she was very positive. She was still in a lot of pain though and thought it would have subsided by now. She resorted to sleeping in an upright position on the couch to put a pillow under her arm and back to comfort her. Her pain is isolated to the side where she has the mass, but now extends down her shoulder and into her arm and hands. The radiation is positioned to hit her in a few places, and since some of the radiation seems to be hitting her shoulder and neck she started to have a hard time swallowing food and had what she said felt like a sore throat, or irritation in her throat.
Week of October 6th: Third week of treatment and she developes Shingles (radiation & chemotherapy)
After the last round of chemo my mom was in terrible pain and was getting shooting pains up her back and into her arm. She also was itching a lot and had a hard time getting comfortable at night. The only thing that was helping was pain meds and warm baths and a constant heating pad on her back. After her radiation treatment her radiologist looked at her back and said she might actually have shingles. This could explain the pain in the area and up and down the arm, the discomfort and also the stinging she was feeling. They sent her to the ER and had her there to evaluate. Turns out she did have the shingles virus and was almost admitted into the hospital. Apparently low immune system and stress can bring the shingles virus on and it attacks the nerves way below the skin. This explained so much and after some medication and some prescriptions she was sent home. She had a pain patch applied and that would help to calm the skin. The 7 day course of antibiotics were to help kill the virus or at least contain it. This was the last thing she needed to deal with but at least we knew what most of the pain was coming from. She went back to her treatment routine and kept pushing forward.
Shingles and Cancer: The virus never leaves the body but lives quietly in your sensory nerves until some stress to the system brings it out of hiding. A telltale sign of shingles is a characteristic skin rash, indicating inflammation and nerves set off by the underlying virus.
Week of October 13: Fourth week of treatment – malnourished and admitted into hospital
Almost one week after my mom’s third chemotherapy session she got very sick. The sick you fear when you think about chemo; throwing up, cold and hot and nothing would stay down. Not even water or gatorade would stay down and all she wanted to do was sleep to avoid the dry heaving and throwing up. She went from a frail 105 lbs to 94lbs in what seemed like one week. I don’t know what this last set of chemo did but it literally took her for a spin and dropped her smack on her face. I even went to the grocery store to get her high calorie foods that are small to eat, like almonds or yogurt and peanut butter. She told me everything made her throw up and the thought of eating made her ill. When she went to go for her radiation on that Monday, after a weekend of not eating more than a piece of toast, her doctors admitted her into the hospital. They said she was malnourished and dehydrated and that they wanted her to stay until they could get her weight up. They put an IV in her to do fluids around the clock which seemed to help but she still couldn’t eat more than a jello or some hot tea. The doctors decided that it was necessary to put a feed tube into her stomach to allow her to bipass her having to swallow food (and throw it up) and put liquids and drinks right into the stomach so she could gain more weight.
Week of October 20: Finally home from hospital and appetite is back!
My mom was finally released from the hospital with her feeding tube in her belly and was sent home. She was able to sleep in her own house and be comfortable. The insurance company set her up with a bunch of shakes to put in her feeding tube if she didn’t feel she could eat solid food, but as soon as she got home her appetite came back. She was ready to eat and has since gained back 2lbs. She is still under 100lbs but we have to keep getting her weight up. The doctors also said the latest CT scan shows the tumor is shrinking but it is still too attached and close to her spine to go in for surgery yet. She is also too low in weight to have surgery so we have to keep going through with the radiation this week and back to the chemotherapy. This week will be here fourth treatment. She is slowly losing some hair when she showers but not much that can be seen. She has a ton of hair so right now she looks like she hasn’t lost much. We went that weekend to Trader Joe’s to get my mom some groceries but more than anything to get her out of the house to get fresh air, I think she missed that and it was nice. She had to use the motorized scooter because the radiation has made it hard for her to catch her breath. The radiation has taken a toll on her throat since they do position it to hit that area as well.
Week of November 3rd: Back in the hospital, chemo sucks and hair is falling out 🙁
Well it finally started to happen, my mom is losing her hair after her 5th week into treatment. It now comes out in large clumps she said in the shower but she went and bought herself a nice wig that looks like her regular hair. She can also submit the receipt to her insurance to get some money back from the cost of the wig. She doesn’t wear it much but at least she has it when she wants to wear it. The last week has been ups and downs and a lot of downs. Mom is getting sick a lot and losing some more weight. She was even throwing up from the liquid she was inserting in her feeding tube in her stomach, so when she went back to the hospital for radiation they told her she had to stay. She has been in there since Monday and today is going in for another round of chemo. I suggested she just keep going and not pause any treatments. It’s better to just keep moving forward and get it over with. That’s the worst about cancer, the chemo is awful. What it does to the body is so horrible to see. My mom is down to 97lbs and her appetite is gone. She is in a lot of pain and is always nauscious now so food to her just has no appeal. I got her some soup which worked, usually a nice chicken broth soup and some crackers are tolerable. She had a scan with contrast done last week that her tumors are shrinking but they are not yet ready for surgery yet. We are hoping they can shrink her cancer enough so it is no longer attached to her back bone/spine and then they can remove it. Let’s hope and pray that is the case.
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