A Caregiving Experience
Diagnosed With Stage 4 Lung Cancer
I was the primary caregiver to my best friend's mom, Linda, about 6 months before her death. I was already living with her, my best friend, and Linda's grandson she had adopted. She had asked me a few months prior to the diagnosis to stay home and stop working because she needed help with keeping up the house as she was beginning to struggle with daily household chores. So I began to stay at home and help around the house as she needed it.
One day her left leg swelled to a fairly concerning size. She said it was painful, and it was difficult for her to bare weight on it. We went to the emergency room where the prescribed pain medicine but couldn't find what was wrong with it. We went to her primary care doctor who couldn't find anything either. This went on about 4-6 weeks. We had a friend who was a RN at church, and she suggested she go to a cardiologist. So Linda looked up a good one, and set up an appointment.
Later at the doctor's visit, they had her do an ultrasound. The next thing we knew, she was being admitted to the hospital because they discovered a huge blood clot. Upon being admitted to the hospital, they ran some other tests. These other tests revealed our worst fears. By the next day, they told us they needed to put a stint in one of her kidneys because there was a blockage there. Apparently, they found what looked like a mass on her lungs while doing that procedure and needed to do a lung biopsy. A couple days later we had a confirmed diagnosis of stage 4 lung cancer. This is where our journey began.
Treatment For Cancer
Linda received her first treatment of chemo therapy while in the hospital. We found out she had a mass in her lung, one on her thyroid gland, one wrapped around her kidney causing that blockage, and one huge one in her leg that had caused the blood clot. The above picture is of her resting right after we got her home from the hospital with the 2 dogs.
Within a few days we had a follow up appointment with the Oncologist. We also had to follow up with a kidney and lung specialist. They changed up her medications while in the hospital, and I needed to set up a good system for making sure she got all her meds. We had a class to attend on her chemo therapy so we knew what we had to expect and do to get through the process. I had to monitor all of her vital signs (blood pressure, heart rate, temperature, and weight). She had to go on a special diet.
She had so much going on all at once. To keep track of everything and to keep my sanity, I got a notebook and literally recorded everything. I wrote down when she ate, when she slept, when she went to the restroom and what she did while there, her vital signs and when they were checked, what medicines I gave her and when and if she had any side effects or symptoms. Any of this could have been vital for the doctors in her care and there were times it was needed.
Her daughter and I went with her to her chemo therapy treatments and all her doctor appointments with her. We handled business at the pharmacy and made sure she got all her medicines correctly. We had to wash all of her laundry two to three times in hot water after her chemo treatments. We covered her chair in a sheet as the chemicals in her body could be sweated or excreted out and we had a child living in the house too. We went through the house and cleaned from one end to the other extensively a day or 2 before she had therapy. We became germaphobic since she could get sick easily 5 to 10 days after the treatment.
Tips We Found That Helped
We did a few things that made our life easier during this time. We had things organized for easy access like snacks, medicines, and hand sanitizer. We had a hospital bag and things we took on extended outings and to chemo therapy. Below I am listing some things that we did that helped. We kept a lot of lists too.
- We got a baby monitor. (she didn't like to ask for help in the middle of the night.) This way, even if we were not in the same room with her, we could here what she was doing and determine if she needed help. She wasn't supposed to walk without supervision. The doctor was afraid she would break her leg if she fell since the mass had weakened her leg. If she were to break her bone that would really complicate things.
- I put a list of all of her doctors, their phone numbers, the home health agency with phone numbers, and any other important numbers on the fridge. I kept these numbers all on my cell phone as well for quick reference.
- I made 2 lists of her medicines, their dosage, and when she took them. I had one to keep in a folder I took with us where ever we went and I had one to keep at home with the medicines.
- I kept a hospital bag ready to go in case I needed to get her to the ER. Things you may include in the bag are: depends, wipes, sanitizer, adult diaper cream, a change or 2 of clothing, snacks, toiletries, and personal hygiene items. If you are also taking someone to chemo therapy, you may want to plan to have some sort of entertainment such as a laptop, tablet, portable game system, puzzle books, pens and/or pencils, and reading materials.
- I got a support system together. I got names and phone numbers of people any of us could call if we had a question, needed help, or just someone to talk things out with. I can not begin to stress how important this support system was.
- I tried to develop a routine of eating, sleeping, and exercising at regular times of the day especially since the doctor wanted her to eat something every 2 hours while awake.
Chemo or no Chemo
If you found out you had end stage cancer, would you take Chemo therapy?
Struggle For Life
After about 3 treatments of the chemo therapy, She took a PET scan. The results were good. The chemo therapy was working. Most of the cancer if not all of it was gone. We were so excited. The doctor didn't want to just stop the treatments though, he was afraid it would come right back if we stopped it immediately. So he wanted to do 2 more treatments and begin weaning her off of them.
She took the next treatment shortly after this. It made her very ill. This was more severe an illness than previous treatments had resulted in. Five days after the treatment, Linda couldn't keep anything down. She would no more swallow it and it would come right back up. It was hard to see her like this. I had to try to force her to try to eat or drink something every 30 minutes, order of the doctor. Finally after about a day of this, we took her into the doctor's office and he gave her iv fluid. When this didn't work, he admitted her to the hospital.
This was the beginning of the end. We found out she had developed pancreatitis and had a large cyst on her pancreas. She was in the hospital about a week before she was moved over to the Specialty Hospital where they gave her TPN (Parenteral nutrition) in a peripherally inserted central catheter (PICC or PIC line) for a couple of weeks. It got to where she was going to need a blood transfusion, and she decided to stop all treatment. She stayed there for about a week after that before being transferred to hospice. After going to hospice, she was gone within 2 weeks.
Here is a link for more info on PIC lines, https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter