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Nothing Makes Sense


denverjim

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I lost my mother a week ago on Sunday, July 25. Sudden. Totally unexpected. Nothing makes sense. Nothing. Please don't feel obliged to respond to this; I'm just overwhelmed, sad, and confused.

Here's the story:

My parents live(d) in the Texas Panhandle. I live in Denver and my Sister lives in Central Texas. My Sister and her husband have had very heavy job and school commitments for years and finally got a chance to take a two week vacation this summer. Everyone was excited because the whole family had planned a trip to Jackson, Wyoming, and Yellowstone for the week of July 18 - 25.

My parents came to Colorado over Memorial Day to visit me, my wife, and our three little boys. We spent 4 days in Winter Park (at an elevation of 9100.) Even healthy people can sometimes have breathing problems up there. But, my Mom didn't. She looked the same as she had for years. Had plenty of energy. Nothing at all seemed wrong....

In mid-June, she went to the dentist for a root canal. Igh. The dentist gave her ibuprofein and an anti-biotic. A few days later, she started complaining about a metallic taste in her mouth and that everything tasted bitter. Even water. Her energy level began dropping and she developed a cough. Her doctor gave her cough medicine and that helped quite a bit. But, the metallic taste and the fatigue lingered. She also noticed that her resting heart rate was anywhere from 100 to 120 beats per minute. She was 62 years old. So, that's pretty high.

About July 15, Mom went in for a full EKG and they also did 14 different blood tests. Her heart was described as VERY strong and her blood counts, etc., were TOTALLY NORMAL. -- She asked the doctor what he thought was wrong. He said that he assumed that she had very severe allergies to something this year. (Allergies are a plague in the Texas Panhandle.) He suggested that she go ahead with plans to drive to Yellowstone. My Sister was with Mom for these tests. I didn't know about them; but I did know about the cough and the suspicion of allergies.

My Mom also, proudly, told me that she had lost 12 pounds since the end of May. She was very proud of this fact because she had been eating a 1200 cal a day diet for years, had been exercising, and still weighed quite a bit more than she wanted and couldn't lose anything.

On July 18, my Sister and her husband and my parents met us here in Denver. We started the drive to Yellowstone immediately; we wanted to get going fast, so they met us in a parking lot along I-25. :-)

We stopped for gas in Fort Collins. I went back to my parents' car and talked to my Mom. She looked a little pale. She wasn't coughing but told me that her heart rate was still up and that she wasn't feeling good.

We got to Jackson about 8:30pm and Mom went straight to bed. Dad stayed with her. But, the rest of us went out to eat. She was the point of conversation. My Sister was worried about her. She said that Mom had lost 20 pounds - not 12. In 6 weeks. (She had lost 8 pounds since she told me about her fortune with weightloss.) My Sister is a physical therapist and told us that she had seen someone the week before with similar symptoms and that the person had pneumonia and TB. (Mom was a carrier for TB. So, we got even more worried.)

Everyone was supposed to take a hot air ballon ride on Monday (July 19) morning. But, Mom wasn't up to it. My wife and I had our arms twisted so hard that we went. My Sister and her husband were going to go, but something happened to the balloon they were supposed to ride in.

After the balloon ride, my Dad called my Sister and I into the car and started crying. He was very worried and wanted to know what we should do. Mom was getting weaker. My Sister and her husband checked on flights out of Jackson while my wife and I checked on the hospital in Jackson. It seemed like a well-equipped, competent, modern hospital. My recommendation was that we take her into the ER there. Boy I'm glad that nobody else liked that idea.

We booked a one way ticket out for Mom and Dad on Tuesday (July 20) morning. Then, at Mom's insistance, we drove about 8 hours through Yellowstone. We bought her a lifetime pass to the National Parks since was had just turned 62 earlier this year. We saw the geysers. Saw Old Faithful. Everything. She was excited. But, she was also upset that she had been "framed" into leaving on a plane the next day.....

When we got to the airport, we found out that they had flagged my parents with a yellow sticker (potential terrorists....) I guess the last minute, expensive, one-way, ticket did that. They had Mom in a wheel chair by then. (She was walking without assistance on Sunday.) They had her frisked all over, wanded, her shoes and jewerly were removed. Bags were hand searched. It was a pretty humiliating experience. She took it in good cheer. But, I didn't. I was watching on the other side of the glass. Some redneck came up to me and told me how disgusting what they were doing to my Mom was. He kept going on about Arabs, Muslims, etc. causing all of this craziness.

Anyway, Mom and Dad got back home about 10pm Tuesday night. (July 20). Mom changed clothes at home and they took her to the ER. At that point, she knew going home was the right decision. She wanted to see her doctor. Her doctor was waiting in the ER.

One of the first things they did was a full set of X-Rays. Her doctor told her that he hadn't admitted someone as sick as her in many years. He also told Mom and Dad that he had NEVER seen a lung X-Ray that looked like hers. He said it could be TB, pneumonia, or lung cancer. But, whatever it was, it was something really unconventional and he didn't even want to guess.

They put Mom in ICU the next morning (Wednesday, July 21.) My Sister and I talked to Dad on the phone and decided to leave Jackson. (Mom had insisted that we stay and do para-gliding and all kinds of things. No way. Not after such a description.)

On Wednesday afternoon, Mom and Dad met with a lung specialist and an oncologist. Both were experienced, older, doctors. Again, they said that they had NEVER seen lungs like hers. What does that mean? Well, the X-Ray looked like she had been shot with buck-shot. There were literally hundreds of little dots all over her lungs. They were the size of a pencil eraser. The doctors took a biopsy.

I arrived at the hospital at 9am on Thursday (July 22) morning. Dad had already seen Mom at 8, but she was sleeping very soundly. He was very glum. The next visiting hours were at 10. When we went in there, we were pleasantly surprised. They had given Mom "breathing treatments" and she was getting plenty of oxygen through her mask. She was awake, in a good mood, and was making a lot of jokes and puns. She was a poet among other things and was using vocabulary that I could only dream of. Wow.

She was very optimistic. She figured she had pneumonia and/or TB. She was in isolation - which means that visitors had to wear a face mask. She thought the masks were hilarious.

We visitied with her at 12 and 2 also. She was very antsy to get out of the ICU. And she knew that the biopsy results were supposed to be back at 2:30. Well, they weren't. So, she was suspicious of us when we couldn't tell her anything.

My Sister came at 5:30. Just after we arrived, we got the news. She had Squamous Cell Carcinoma. Prognosis: 2 days to live. Treatment: Absolutely none. We decided not to tell her. We visited with her at 6. She was losing quite a bit of strength but was still making puns and jokes. My Sister saw her at 8 and she'd lost a little more strength but was still lucid and responsive. Sometimes she was hard to understand, though.

We all missed the 10pm visitation hour. But, sometime around then, her doctor came in. The nurses tell us that she was awake and lucid. The doctor suggested that she go on a ventilator and feeding tubes. She was skeptical at first but decided it would make her more comfortable. I believe she signed the consent form for both. Then, the nurses tell us that she started drifting off to sleep. That's when the doctor told her that she had cancer. The nurses say she kinda grunted but that they don't think she understood.

An hour or so later, they drugged her up really good and put her on the ventilator. Saturday morning (July 24), we moved her to hospice and they brought her out of the drug induced sleep a little as they started to move her. She looked at me, recognized me, and shed a tear. Then she closed her eyes. That's the last communication I had with her. She passed away at 1:03pm on Sunday afternoon.

I just don't understand. She never smoked. Not once. She didn't live in a place with air pollution or radon gas. The research I find on the internet indicates that squamous cell carcinoma is almost exclusively a smoker's cancer..... Every place I find says that it is a slower growing cancer. (BUT, they did another Xray and Cat Scan on her on Thursday afternoon. The cancer had progressed very quickly even to a layman's eye. But, it was limited to the lungs....)

Every place I read describes this kind of cancer as a tumor cancer. But, yet, there was no primary cancer. Just hundreds of little dots. The doctors were SURE that it was squamous cell carcinoma. They got a good sample from the biopsy. But, they admitted that it behaved differently than they had ever encountered.

The oncologist told us that the cancer probably wouldn't have shown up on an X-Ray until the first of July. He said that he MIGHT have been able to buy her 6 months with chemo if the cancer had been caught a few months ago. But, he admitted that it wouldn't have been diagnosable a few months ago....

This just makes no sense to me. Mom was feeling OK until just a few weeks before she passed away. I know. I talked to her every single day. I would have known if something had changed with her. Nope... Nothing. Nothing makes sense.

-Jim

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Jim

It doesnt' make sense to me either. Especially the squamous cell DX. Maybe small cell, but not squamous from all I have read and all the posts here.

I am so sorry for you loss. Is there anyway you can have the biopsy's re-read--sent to another lab. Maybe send all of her records. Just for your peace of mind.

elaine

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Guest bean_si (Not Active)

I don't know what to say Jim. It was shocking just to read it much less live it. I offer you my condolences and prayers for you and your mom.

Mother was being seen weekly by doctors for lupus and back pain. No one thought she had cancer. One day in the doctor's office her heart started racing. One week later she was gone from lung cancer. It's just..........just too much to understand.

Cat

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Wow. That sounds so familiar. What kind of LC did your mother have?

We asked the doctors about retesting. But, they were insistant that it was a very conclusive test with no ambiguity. The whole thing with it spreading so fast and the fact that there was no central tumor almost looks like a petri dish that was innoculated with bacteria. I remember taking a microbiology class in a nursing school about 15 years ago. We would take swabs off of water fountains and let them grow. Nothing would appear for a couple of days. Then, it looked like a bunch of little specs on the plate. Within a week, the specs had grown together and merged into one big mass.

Today is the hardest since Thursday or Friday. I'm back to work today for the first time. Just kinda dazed. I'm dreading the commute home. I called Mom every day on the way home. This will be the first time without her....

Jim

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Guest bean_si (Not Active)

She died before they got the biopsy back. My sister said they told her it was small cell cancer but they got that from looking at the CT scan. She never even got to see an oncologist because they said they had to wait until they got the biopsy before treatment could begin.

She was in another state and I was working. I had just got tickets to fly up but she was gone before I could. I asked my sister a couple times if she ever got the actual report and she said no. It really is too much to believe. To make matters worse, that night I got home to hear a desperate call from my sister. She was calling from the hospital. I called the hospital and was told by a nurse - 1000 miles away - that mom had died.

I imagine what shock you must be in. You have all my sympathy.

Cat

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JIm,

I'm so sorry. That was very sudden. I've lost a parent to LC, but not in this way. I don't have any answers or words that make anything better...but I just wanted to let you know that I am thinking about you, and sending prayers for some comfort during this difficult time.

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Jim,

That was a mesmerizing story. I don't know how it could be, either. It's one of those things, though, that I'm sure you would feel a lot better about if you had more information. Did your dad not want an autopsy done? Jim, I'm so very, very sorry for your loss and I will pray diligently that you will find peace from God.

God bless you,

Peggy

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Jim I am so very sorry for your loss. I know how that hurts. I do have a question or two. Perhaps if you persue it you might find an answer. Did the small spots you saw look strange in any way? Did any of them look like they had a tail like the pictures you see of sperm? Also is there any posibility that your mom was exposed to mold or anything that would cause a fungus to grow?

I ask these questions because your mom's exray sounds a lot like the one I saw of Johnny's when he was diagnosed. The ones that looked like sperm always made me wonder. I know for a fact that he had been exposed to mold over a long period of time. I have also known someone with Valley Fever witch is a very serious form of fungus. I never got any answers to my questions. Johnny never had a biopsy of his lung. Nothing else was tested for either. He was supposed to have gone from a couple of nodules in May to what looked like a hundred or more. Yet with treatment they started to disappear. Not sure if it was the chemo or something else that made them go away. I just know that when he started getting worse again he had once more gone to the area where the mold was. Needless to say I like you have a lot of questions. Lillian

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