A Lot to Process
Yesterday we received devastating news. My mother-in-law, Dana, was told she has esophageal cancer.
Last summer she started experiencing a strong pain on her abdomen below her right breast. Her blood tests came back normal. The pain soon spread across her mid-section. She initially thought it was her gall bladder but that was ruled out with an ultrasound.
In mid-October the symptoms worsened to include nausea, loss of appetite, and eventually the feeling of shards of glass when burping. These symptoms continued to worsen to where the nausea was constant and she was able to tolerate fewer and fewer types of foods. She also started complaining of back pain, possibly from favoring her abdomen constantly. A CT scan in November and then an MRI in early December showed no definitive cause of her symptoms other than a thickening around some areas of her upper abdominal cavity.
Her primary care doctor finally issued a referral to a gastroenterologist. It took several weeks for the GI office to call to arrange and appointment and once she received the call it was extremely frustrating as they told her their first appointment wasn’t until May (this was the week before Christmas) and there was nothing in the referral indicating any sense of urgency. Dana called her primary care immediately and was able to secure a different referral and finally was able to see the GI doctor on Monday January 6. He scheduled an endoscopy and a colonoscopy for the following week. Between those appointments, Dana stopped being able to pass ANY solid food and was still experiencing constant and severe pain and nausea.
Which brings us to Wednesday. After originally being told she would need to wait 2 weeks for the results of the scopes, the GI doctor instead came into recovery to tell Dana and Lynn that he found a large tumor in her esophagus and advised that she likely has esophagus squamous cell carcinoma, an aggressive form of esophageal cancer that, depending on severity, may respond to treatment. From what he could see, the doctor did not believe the cancer had spread to the lymph nodes, but that will need to be confirmed.
Prognosis of this type of cancer is grim. Fewer that 5% diagnosed survive 5 years. Most patients succumb to the disease within 12 months of first experiencing symptoms. If she is lucky enough that the cancer has not spread and is only at Stage 2, she has a 45% chance (of stage 2 patients) of surviving the next 5 years. The odds are sadly not in our favor.
What makes this diagnosis so much more difficult that it would already be is the fact that my father-in-law suffers from dementia. He is about 7 years into his diagnosis, and while he knows who we are, he has lost the ability to write (even the three letters of his name) and read. His ability to communicate is nearly gone as he loses his thoughts quickly. He has been told numerous times in the past day that his wife of 40+ years has cancer, but he doesn’t have the cognitive ability to retain the information.
And to top it all off, Dana has provided our childcare for 2 to 3 days a week for the past 5 years since they moved into our neighborhood. She comes over early so that Lynn can leave for work and I can go to bed after my graveyard shift. She gets the kids breakfast and ready for school, drops them off and then picks them up after and takes them home. She plays games with them constantly and encourages lots of fun and play during her time with them. She takes them to after school activities when needed and attends as many sport games and performances as possible.
To say we are devastated is putting it mildly. At the very best we are facing a long treatment plan potentially including surgery, chemotherapy, and radiation. At the worst we are preparing to say good-bye to my mother-in-law while figuring out how to continue to continue the most excellent care for my father-in-law that his devoted wife has provided him over the past several years.
At this point I am battling feelings of anger and resentment. My mother-in-law has led a life of charity and servitude towards others. She was a registered nurse for over 40 years with a specialty in wound care. As a home health nurse she once had a young patient who preferred her to all other nurses because she was the only one who was gentle enough to not cause him pain when dressing his wounds.
A few years after my in-laws settled in Grass Valley they moved her parents to be near them so that she could care for her father who was in failing health. After he passed away in 2004, her mother’s health started on a steady decline; then her husband’s diagnosis of dementia around 2013, then her mother’s death a few weeks before they moved near us in 2015. She has been the primary caretaker for 3 of her closest family members for the past 30 years.
She retired from nursing at the end of 2018 and was just starting to settle into a routine of excercising at Curves and volunteering at her church and a local hospice thrift store when the symptoms started. To have this awful disease cause her so much pain and anguish (both physical and mental) is heartbreaking.
I’m frustrated that her primary care doctor seemed to not take her early complaints seriously enough to have any sense of urgency to figure out what was causing her symptoms. I resent that the (what I feel was) inaction of her primary care doctor will take my mother in law from us way too soon.
She is just 67. Her father lived until 85 and her mother lived until 95.
I thought we had decades left with her.
It may just be months.
I’m terrified that the diagnosis came too late to fight this disease.
I’m sad for my husband to lose his mother.
My heart breaks for my young children to lose their grandmother and see her ill.
I'm scared I won't be able to maintain any sense of normalcy for my children during this transition and after.
And to be honest I’m frightened about what the future holds for our family learning to care for an elderly dementia loved one.
Last summer she started experiencing a strong pain on her abdomen below her right breast. Her blood tests came back normal. The pain soon spread across her mid-section. She initially thought it was her gall bladder but that was ruled out with an ultrasound.
In mid-October the symptoms worsened to include nausea, loss of appetite, and eventually the feeling of shards of glass when burping. These symptoms continued to worsen to where the nausea was constant and she was able to tolerate fewer and fewer types of foods. She also started complaining of back pain, possibly from favoring her abdomen constantly. A CT scan in November and then an MRI in early December showed no definitive cause of her symptoms other than a thickening around some areas of her upper abdominal cavity.
Her primary care doctor finally issued a referral to a gastroenterologist. It took several weeks for the GI office to call to arrange and appointment and once she received the call it was extremely frustrating as they told her their first appointment wasn’t until May (this was the week before Christmas) and there was nothing in the referral indicating any sense of urgency. Dana called her primary care immediately and was able to secure a different referral and finally was able to see the GI doctor on Monday January 6. He scheduled an endoscopy and a colonoscopy for the following week. Between those appointments, Dana stopped being able to pass ANY solid food and was still experiencing constant and severe pain and nausea.
Which brings us to Wednesday. After originally being told she would need to wait 2 weeks for the results of the scopes, the GI doctor instead came into recovery to tell Dana and Lynn that he found a large tumor in her esophagus and advised that she likely has esophagus squamous cell carcinoma, an aggressive form of esophageal cancer that, depending on severity, may respond to treatment. From what he could see, the doctor did not believe the cancer had spread to the lymph nodes, but that will need to be confirmed.
Prognosis of this type of cancer is grim. Fewer that 5% diagnosed survive 5 years. Most patients succumb to the disease within 12 months of first experiencing symptoms. If she is lucky enough that the cancer has not spread and is only at Stage 2, she has a 45% chance (of stage 2 patients) of surviving the next 5 years. The odds are sadly not in our favor.
What makes this diagnosis so much more difficult that it would already be is the fact that my father-in-law suffers from dementia. He is about 7 years into his diagnosis, and while he knows who we are, he has lost the ability to write (even the three letters of his name) and read. His ability to communicate is nearly gone as he loses his thoughts quickly. He has been told numerous times in the past day that his wife of 40+ years has cancer, but he doesn’t have the cognitive ability to retain the information.
And to top it all off, Dana has provided our childcare for 2 to 3 days a week for the past 5 years since they moved into our neighborhood. She comes over early so that Lynn can leave for work and I can go to bed after my graveyard shift. She gets the kids breakfast and ready for school, drops them off and then picks them up after and takes them home. She plays games with them constantly and encourages lots of fun and play during her time with them. She takes them to after school activities when needed and attends as many sport games and performances as possible.
To say we are devastated is putting it mildly. At the very best we are facing a long treatment plan potentially including surgery, chemotherapy, and radiation. At the worst we are preparing to say good-bye to my mother-in-law while figuring out how to continue to continue the most excellent care for my father-in-law that his devoted wife has provided him over the past several years.
At this point I am battling feelings of anger and resentment. My mother-in-law has led a life of charity and servitude towards others. She was a registered nurse for over 40 years with a specialty in wound care. As a home health nurse she once had a young patient who preferred her to all other nurses because she was the only one who was gentle enough to not cause him pain when dressing his wounds.
A few years after my in-laws settled in Grass Valley they moved her parents to be near them so that she could care for her father who was in failing health. After he passed away in 2004, her mother’s health started on a steady decline; then her husband’s diagnosis of dementia around 2013, then her mother’s death a few weeks before they moved near us in 2015. She has been the primary caretaker for 3 of her closest family members for the past 30 years.
She retired from nursing at the end of 2018 and was just starting to settle into a routine of excercising at Curves and volunteering at her church and a local hospice thrift store when the symptoms started. To have this awful disease cause her so much pain and anguish (both physical and mental) is heartbreaking.
I’m frustrated that her primary care doctor seemed to not take her early complaints seriously enough to have any sense of urgency to figure out what was causing her symptoms. I resent that the (what I feel was) inaction of her primary care doctor will take my mother in law from us way too soon.
She is just 67. Her father lived until 85 and her mother lived until 95.
I thought we had decades left with her.
It may just be months.
I’m terrified that the diagnosis came too late to fight this disease.
I’m sad for my husband to lose his mother.
My heart breaks for my young children to lose their grandmother and see her ill.
I'm scared I won't be able to maintain any sense of normalcy for my children during this transition and after.
And to be honest I’m frightened about what the future holds for our family learning to care for an elderly dementia loved one.
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