Welcome to our Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
With mom's permission, we are using Caring Bridge to let everyone know what's going on.
This is something we never thought we would be doing. Back in November, mom started having difficulty breathing and started to feel run down and having weakness in her right arm. Despite our urging her to go to the doctor, she put it off until December 24th, when she went to Urgent Care. X-rays were performed and it was noted that there were fractures in two of her vertebrae and, a "spot" in the lower lobe of her right lung, was instructed to schedule a CT Scan and was given antibiotics to treat her pneumonia. She took her antibiotics and said that she was feeling better but was still feeling run down.
On December 30th, Teri took mom to the ER. She was in the ER over night while she waited to get a room. She had imaging done as well as a biopsy of her 8th rib. After a LONG wait, her diagnosis was given: Stage IV Small Cell Lung Cancer that had metastasized into her liver, adrenal glands, lymph nodes and bones. We were on a conference call with the oncologist who recommended chemo and said that this type of cancer is very treatable but is not curable and that the treatment is usually tolerated really well. The doctor said without treatment, we were looking at mom only making it 7 months. With treatment, a year or more.
On January 4th, she was released and went to Teri's house. On January 7th, I took her to an appointment with her oncologist where it was decided that she would begin chemo. Because the cancer was moving so quickly, the doctor got mom set up to begin treatment the following week. THIS oncologist said that mom would only have 1-2 months without treatment and possibly a year with treatment. Definitely a bit different than the oncologist at the hospital. Mom said that knowing she could get treatment so soon was something positive to hold onto.
On January 11th, she had her first chemo treatment and despite it being a VERY long day, she tolerated it really well. Tuesday, the 12th, she had her second treatment which was a few hours; she was in good spirits and again, tolerated the treatment really well. When we got home, she was very alert, talkative and was feeling an overall improvement. Later that night, she began to have some back pain and wasn't able to sleep. Her pain continued to increase as the day went on; I was barely able to get her to her third chemo appointment because she was in so much pain. Once we were at her appointment, her pain became so severe that they had to give her morphine which didn't even touch her pain; an hour later, she was given another 4mg of morphine which didn't do anything either. It was decided to have an ambulance transport her to the ER.
Saturday, January 16th, Teri and I were able to visit with her, her oncologist and palliative care doctor. She was fairly awake, somewhat alert and her pain managed. Because the pain in her spine was so severe and only showing signs of worsening, the oncologist recommended MRI's for her cervical, thoracic and lumbar spine. The oncologist explained that the MRI's would be to locate the lesions on her spine and treat them with radiation. With the chemo treatments scheduled three weeks apart, they didn't want to wait 2 1/2 weeks for her next chemo treatment because the cancer was moving so quickly. Each MRI would take about 45 minutes and she would need to lay flat. Because she was unable to lay flat without being in excruciating pain, they were going to try and medicate her enough to make her comfortable for the procedures.
Sunday, January 17th, I spoke to her, she was definitely in the pain med "fog" but was coherent and told me that she tried to get the first MRI but, she could NOT lay flat and said that she was done. She was in too much pain. The plan was to speak with the oncologist to see if it there was some way to manage her pain or any other options. Later that night, we got a call from someone from her palliative care team requesting we come down to have a meeting to talk about hospice.
Monday, January 18th, Teri and I met with mom's oncologist and palliative care doctor. The effort to take her off of IV pain meds failed as she was unable to swallow and keep the oral medications down. It was obvious that mom had declined even more as she was not able to carry on a conversation and seemed confused. She was also in pain for most of the visit which was frustrating as her main wish was to not be in pain; she doesn't want to have any pain. The plan was to work with the case manager to get hospice arranged so she could come to my house. Before that could happen, they had to figure out how to manage her pain without the IV. They tried a fentanyl patch which didn't seem to do anything; her pain got so bad that they had to give her a large dose of IV meds to get her pain back under control. She was finally comfortable. We left with the hope of being able to make hospice arrangements the next day.
Tuesday, January 19th, Teri and I spoke to someone on mom's palliative care team. We were told that they had to double the dose of her fentanyl and switched from morphine to dilaudid. They said that they didn't think mom would be able to handle the ride to my house (56 miles from where she is) or to Teri's for that matter. It went from days to weeks to hours to days that we have left with her. It's been difficult with COVID restrictions because of the amount of time she was and has been in the hospital, we've been unable to visit. There are still restrictions but, with her more than likely staying in the hospital until the end, we will be able to visit with her, thankfully. It's not where she wanted to be but, at least her main wish to manage her pain is being fulfilled.
