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How I Became a Health Care Consumer, and not Just a Patient Part 3

When I go to the doctor's office, hospital or clinic, I don't think of myself as a "patient" in the traditional sense of the word anymore. I don't think of medical professionals as omnipotent beings oozing with right judgment and wisdom with my best interest in the forefront either. But it took a while to get here - decades in fact. Over the next few posts, I'm going to explore how I got to this point in my life for myself and my family.

Part 1

Part 2

My mother was living in rural northern New Mexico when she noted blood in her urine consistently. After a workup and a referral to a urologist, she was diagnosed with bladder cancer and underwent a bladder surgery. At the time I  was living on the other side of the country and pregnant with my 4th child. I only heard about her condition when she could update me and I do remember getting at least one phone call from her urologist.

But Mom's phone calls started sounding a little weird. She had stents placed in her bladder that extended through her urethra. When she talked to my sister about these stents she was alarmed and called them "snakes."  There were other things about the way she spoke that made us worry about her mentally. I wrote about that period of time here. 


A few months later, Sis mentioned to me that Mom wasn't sounding right on the phone. Her conversation sounded nonsensical and she just wasn't being herself.  After talking to mom myself, I agreed that something was a little "off" about her, but I wasn't alarmed until I tried to call mom and discovered that her phone had been shut off for nonpayment! That really was not like my mother to let her bills go! I wondered if her cancer was back and causing problems with dementia.

In a panic, I called the phone company and got her phone back on.  Then I called my mother to find out what was wrong.  And she couldn't tell me.  In fact, she said she just didn't have much energy and couldn't talk.  This really concerned me.

... she gave my mother an empty suitcase and popped her on a train towards Ohio.

Mr. Pete and I were stunned by her appearance.  She was disheveled, she smelled bad and she was swimming in clothes that were much too large for her.  And aside from all that, Lucia had put her on a train in the winter time without a coat. 


We discovered that my mother had a large frontal meningioma - a brain tumor. From that moment on, I found myself in a new and uncomfortable role in my life - advocate for my mother's health care.

A couple of things happened in the process of getting her diagnosed and treated. First of all, no one was really able to diagnose this quickly when she first arrived. When she accidentally set her apartment on fire we did find a psychiatrist who was willing to put her in a psychiatric ward. but it was a family practitioner who finally ordered the scans that found the tumor. But he even did them reluctantly after I started asking about getting a CAT scan.

When she was in the middle of her 15-hour surgery to have this tumor removed, the exhausted surgeon came in and talked to me about my mother's age. She was only 69. If she had been older he would have considered cutting the optic nerve to reduce the surgical time. I begged him not to do that and he complied. That was one of the oddest conversations I have ever had in my life.

She survived this surgery well and started to have a more normal affect. Unfortunately, because she was under anesthesia for so long with her arm extended for blood pressure and IVs etc, she suffered a brachial plexus injury. Simply put, if someone had thought to move her extended arm sometime during the surgery, she would have not only survived the surgery unscathed, but she would have had a pain free recovery. Because of this injury, she was in constant pain and could no longer feel her little finger and lost some of the strength needed to play the piano.

This is now the second family member I had to lose important function in their hands due to surgery. I took note.

During mom's recovery in the ICU, I noticed some things too. The nurses and technicians who were caring for mom didn't seem to regard her as a person. I realize that they were super busy and had a lot of responsibility for all of the patient's in ICU, but I wanted them to see my mother as she was before the surgery. So I made a poster. I blogged about that here.  


In 1998 my mother had a very large brain tumor removed and spent several days afterwards in a coma. I noticed while I was visiting that the caregivers were very competent, very professional, but somewhat detached from my mother. It was as if she was a body to care for but not a person. So one night my kids and I made a poster. I put a picture of her in the center in a nice dress with her hair fixed beautifully, and pictures of the kids doing funny things like swimming and playing. 
We also wrote "Get well soon" and "We love grandma" on red hearts around the picture. The next time I went to ICU, I put the poster up near her bed. Many of her nurses and caregivers saw it and smiled. They started asking me questions about my mom like, what she use to do? how many grandkids? and stuff like that. She became more personal for them, and when she finally woke up, she was pleasantly surprised to find that her caregivers already knew a little bit about her life.

During this recent hospitalization, I took a a brag book up to the hospital, and she has been sharing her family and her experiences with the nurse's aids and staff when they come to her room. Mom told me that she's had several pleasant visits with people looking at her pictures. 

Today mom will go to surgery and I plan to make another poster to hang in her room, that will speak about who she is and what her life is like while mom can't so that she will be more of a complete person to the people caring for her. I think that it is so important for them to see her as a woman with a life and loved ones instead of merely an 81-year-old cancer patient, with the goal that they will each give her the best of care. That's the plan anyway!

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Mom recovered from both the bladder cancer and the brain tumor. She was seeing a primary care doctor regularly who eventually diagnosed her with multiple myeloma. She was then under the care of an oncologist almost monthly.

Which makes me absolutely astounded that he missed the subtle but unmistakable signs of ovarian cancer. I blogged about that here.


I am writing now to let you know how disappointed I am that this was not caught sooner. I understand that there is no reliable “screening” mechanism for ovarian cancer. However, since my mother was seeing you regularly and her signs were classic for the disease AND since she already had cancer which made her at higher risk for ovarian cancer, I am astonished that this wasn’t picked up sooner.

In my opinion, you dropped the ball on this one. I don’t know if it would have made a difference if you had drawn a CA 125 earlier or if you had really listened to her and suspected ovarian cancer last December or January if it would have prolonged her life or not. But I do know that by the time it was found she was too weak to do the chemotherapy protocols and she never had a chance or a choice. And so now I am without my mother and my children no longer have a grandmother.

I know she was an 81-year-old woman with terminal cancer anyway, but before the ovarian cancer became symptomatic, she had a good, vibrant and productive life with her family and the community. Her life had meaning and was important to a lot of people. She mattered and I think it is tragic that this was not diagnosed sooner particularly since her symptoms were precisely what is presented on the Ovarian Cancer web site. I hold you partially responsible for this.

I would hope that in the future, if any other older women present this way that you would immediately suspect ovarian cancer and treat them accordingly.



Lastly, I was very disappointed with hospice care. I remember when they told us that Mom had to go on hospice and asked me which hospice care provider I wanted, I asked the nurse which one she preferred. She told me, and that's the one we went with. What I didn't know was she picked the hospice care that was BETTER FOR THE NURSING STAFF, and not necessarily best for my mother.

Once again, I blogged about that here.

I should also mention that we picked this particular hospice, Asera Care, on the recommendation of one of the nursing home nurses. I asked her which hospice was best, and she said that one.  In retrospect I should have asked her which hospice would have been best FOR MOM AND FOR US, and not for her.  The reality was the nursing staff liked Asera Care because they stayed out of their way.  I felt in some ways that mom's care fell into a limbo once hospice came on board - the nursing staff felt it was the hospice's responsibility and the hospice felt the nursing home staff  should always be responsible. It was in retrospect, a mess. 


To add insult to injury, some weeks later I got a veiled threat from the hospice care that they were going to bill me for something if I didn't come down and sign some paperwork. I made them send it - I don't think I could have been civil if I had shown up in purpose.


But it wasn't just the experiences of my elders that have shaped my views on seeking and receiving medical care. My sibling and my children and I have had some bad experiences as well.

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