Patrick Update: The Final Chapter

I am told all goes according to God's plan, not man's. As I sit by his bedside, it is truly hard for me to find any humanity in his protracted dying.

I shed buckets of tears, while caressing his limp hand, watching each beat of his strong heart literally shake his entire body, for no muscle is left on his frame of bones to absorb the jolt. Pain, he can no longer feel, stabs my heart as I listen to each labored breath rush from his body through a mouth that can no longer close.

I think about God a lot, and try to embrace the calm I hear in his sister’s voice, as she explains to me there is nothing to be sad about, as Patrick’s life is now in Jehovah’s hands. He told me before that he has no fear of dying, because his faith in the goodness of his Heavenly Father sustains him. His biggest regret was that his disease robbed him of the time he needed to bring me into the comforting fold of his faith.

So, here I sit, lacking the understanding of why he is still with us, suffering such a terrible end, as I put a drop of atropine under his tongue, so he won’t drown on his own spit. I never thought that I would be praying for him to draw his last breath, ending his agony.

My beloved can no longer move any part of his body, open his eyes, speak, or even swallow. When he is not snoring the growling noise of narcotic induced sleep, we know he is awake and hears us.

His condition changed so quickly, from week-to-week and day-to-day, it seems there has never been any time to adjust. As soon as one regiment was put in place to deal with the medical issues the disease was throwing at us, another part of his body began malfunctioning, forcing me to shift into high gear. He wanted to die at home, so that I could wield the baton conducting the orchestration of his medical care. To feel safe, he said, he could not entrust this task to anyone else. Besides, he confided, my “drill sergeant” persona might be needed when things got rough.

This vicious cancer stole the life from his body rapidly and in the most unkind ways. I cannot really say this past week was the worst, because this whole ordeal has been absolutely terrible. However, during the past week, as he lost the ability to talk and swallow, my anxiety level increased daily. I feel as if I have aged ten years in only one week.

Remarkably, I have photos taken just eight days ago, of him smiling from his bed, posing with my nephews, Andrew and Matthew, their six-foot-five, lanky bodies bending over his bed to get in close to him.

Patrick’s sister, Gwendolyn Branch, has been the glue that has held me together, since her arrival here in Austin, from the East Coast 32 days ago. Her kind and loving nature, admirable patience, nerves of steel, heart of gold, contagious laughter, and steadfast devotion to her brother, and to me, sustained me throughout, what has become, the greatest trial of my life.

I asked Gwen to come here to help me take care of Patrick. But, he wanted her here to take care of me. She has successfully done both, exhibiting great courage, grace, and compassion.

Last night, after sitting for an hour at Patrick’s bedside, reading aloud to him from the Bible, she came to my room at 10:09 P.M. and asked me to come check on him.

I knew the minute I saw him that he was gone. I turned off his feeding pump and began unplugging the tubes. She asked me to check for his pulse to be sure. He was no longer breathing and she asked, “Is he gone, baby?” as I checked and found no blood pressure or pulse. We both began to weep, as she said comfortingly, “He went real peacefully, without a twitch or anything.”

I handed her my phone and asked her to call our friend, David Bracken, who lives across the street, and my daughter, Molly Solomon. David arrived in minutes and he and Gwen shut the door and let me be alone with my beloved Patrick one last time. Molly arrived and sat with me as I laid my head on his chest and stroked his face.

David called the Hospice nurse who was to come and pronounce him. He called the funeral home, who in turn, called the police and paramedics, who were not supposed to come at all. David offered me apologies, as they barged into the bedroom, intruding on my last hour of privacy with Patrick.

No crime had occurred and the police had no business being in my house, and I abruptly asked them to leave. Paramedics with full tackle gawked from the doorway. One of them made their way around to the far side of his bed, and placed a stethoscope on Patrick’s chest, while I held him sobbing in grief. That one left and another appeared at my side, asking to see the “Out-of-Hospital Do Not Resuscitate” form, that we had signed by the hospice doctor, that was supposed to ensure no EMS involvement at the time of Patrick’s death.

I barked at him to leave the room, crying loudly that none of these people were supposed to steal even one precious minute of the little time I had left to hold my husband one last time in my arms. Until now, I had been unable to hug Patrick for the past two months, because of the excruciating pain he suffered caused by tumors growing on his spine from the base of his skull down to his waist.

As the hospice nurse unhooked his IV and collected all the narcotic pain medications, I wept as I lay my head on Patrick’s chest, while Molly lovingly wrapped her arms around me and cried. After a bucket of tears of grief, I finally began to cry tears of relief that Patrick’s pain had finally ended.

I little while later, Molly helped me from his room, as I did not want to see strangers handling my beloved Patrick’s body, which cancer had cruelly left looking identical to a victim of Auschwitz.

A few weeks ago, accompanied by a flood of tears as I held his hand up to my cheek, I was able to tell Patrick how much richer he had made my life. How he had inspired me to become a better person. I thanked him for being my friend these past ten and a half years, for coming here two and a half years ago to lovingly take care of me, and how honored I felt to be his wife. I told him he need not worry about how I would get along after he was gone. I assured him I would figure things out, and all the beautiful memories we made over the years, both in Baltimore and here in Texas, would sustain me all the rest of my days. And, when I told him I would love him forever, he wept. It was the first time I had ever seen him cry.

The last time we danced, we were alone at night in a swimming pool at a condo on Galveston Island. It was 10 September, and stars peeked out overhead from behind swiftly swirling clouds. I stood on his feet as he danced me around in the warm water of the pool. He sweetly sang, “Under the Boardwalk” softly in my ear. We did not know it would be our last dance.

A week later, early one morning he came into my room, where I sleep in a hospital bed so my legs can be elevated and use a machine to keep me breathing while I sleep. He gently kissed me awake and helped me into my wheelchair, then lead me across our apartment to his room and into the bed we used to share. He tenderly held me in his arms for hours. We did not know it would be our last time to snuggle in each other’s arms.

One week ago, when he could no longer use either of his arms, I put lip balm on his parched lips, and then, leaned over his bed rail and we exchanged four tender kisses. We did not know it would be our last time to kiss.

Four days ago, he was already awake when I came into his room to give him his 8:00 A.M. medications. He smiled at me and said, “Ah, one more day I get to see your beautiful face!” We did not know it would be the last day he would be able to speak.

I cherish each of these tender moments and the many more that came before.

He was taken away six hours ago, all have gone home to bed, and Gwen is asleep. Before she left, I had Molly shut his bedroom door, as I do not yet want to see his empty bed. I am exhausted and think I can finally sleep. Sunrise is in an hour. Tomorrow I will take care of a few business matters, and then spend most of the day resting in bed, with Molly here to take care of me.

In a few days I will start packing up. I need to put all my things in storage and be out of my apartment in 30-days, as I cannot afford the rent alone. I will go visit various friends, and take a few months to get my head clear enough to figure out the next phase of my life without Patrick.

Thanks to all of you who were part of the special care team who helped take care of Patrick, as well as, to those who called and/or emailed words of comfort and concern throughout this terrible ordeal.

Ain't No Mountain High Enough

Ain't No River Wide Enough

to keep me from getting to you, babe

Patrick Update: For A Dancer

Dear family and friends:

Patrick is living his last days. He might only have a few days, or, a couple of weeks. We are hoping to have him with us 3 or 4 more weeks, and a miracle is needed for that to happen.

His dear sister Gwen came from the East Coast a little over two weeks ago, and is such a blessing to have near. She bathes each room she enters with Love. Her presence comforts his heart and eases his mind, so much so that Patrick is centered in peacefulness. Sometimes she has had to provide bedside nursing care to me, as well as, to Patrick, as stress is taking a heavy toll on my health. She has become the sister, who is strong for me and gentle with me -- the sister I always longed to have.

My brother, Tim and his wife, Barbara have come in from out of town to spend several weekends with us, caring for Patrick through the night. This week they took off work and came to stay all week, lovingly caring for him, to give Gwen and me a break. They each take turns holding me as I cry when I am overcome with grief, and make jokes to help Patrick smile. As gently as if they were handling a newborn babe, they cradle his frail and fragile body to move him in bed. The first time they came was a month ago and Patrick had just lost the use of his right arm and hand. The following week he lost most of the use of his left.

Now, everything must be done for him. Tim brought him beautiful fresh flowers for his room, and Barbara brought him chunks of really good dark chocolate, both of which delighted him thoroughly. They shop, cook, clean, wash laundry, change bedding, empty urinals, mix up and administer tube feedings, give medications, wash his face, sit with him, and hold his hands. All they do is accompanied by a big dose of love. As he held back heart-wrenching sadness, Tim told me he wished he could take away Patrick's cancer like that guy in the movie, "The Green Mile" could take away death and disease. Barbara told Patrick it was a privilege to be here to help, in response to him thanking her for all she does for him.

No words can adequately describe the gratitude Patrick and I feel for our friend, David, who has remained steadfast by our side, since January when we first learned Patrick had esophageal cancer. He has shopped, picked up prescriptions, and schlepped me and my wheelchair to and from the hospital countless times. He has been my pillar of strength during times when I have been near collapse from grief and stress. He visited when Patrick needed company late at night here at home, and was a regular visitor the many weeks Patrick spent in the hospital. David held Patrick's hand through the dreadful ordeals of receiving radiation and chemotherapy. He played chess, watched movies, and sang oldies songs with Patrick. David fixed things around the apartment, took out the garbage, and helped get Patrick to bed when he could no longer walk unassisted. He remains a very dedicated friend who has constantly shown the utmost kindness and compassion towards Patrick and me. No one has done more to help Patrick keep his spirits up, even on his darkest days. He is and always will be our hero, affectionately known to us as "SuperDave".

My youngest daughter, Molly, comes to see about us a couple of times a week, but is usually not able to stay long, because she becomes overwhelmed with sadness to see Patrick so ill. My oldest daughter, Sarah, phones from the East Coast often to send her love. And, my son Adam, phones from the West Coast to see how we are doing and offer words of comfort. Patrick's brother and sisters, as well as, many of his East Coast relatives telephone frequently to wish him well, which helps enormously to lift his spirits.My home health aide, Mary Helen, is an angel, who comes during the week daily to help care for me and Patrick. She and Gwen take care of all the tasks Tim and Barbara handle on the weekends. At 71, she runs circles around all of us, doing anything and everything she can, staying many more hours each day than those for which she is paid.

And, also on our team of caregivers, we have the services of Hospice Austin, whose staff are dedicated to doing whatever it takes for Patrick to be able to be home, where he wants to be on this last path of his journey. They pay for over half his meds, and send a wonderful CNA three times a week to bathe him in bed. She works with a reverence that amazes us all, as if Patrick is the most important person in her caseload. Nurses come weekly to assess needed medication/treatment changes. I can call and get help from a nurse 24-hours a day, which we have been in urgent need of when Patrick has had "bad nights", either struggling with agonizing pain or repeatedly throwing up his meds.

Twice the Hospice Austin doctor, who happens to have a heart AND a brain, has come to sit with Patrick and learn what needs to be done to ease his pain, as we all struggle with him down this horrendously painful path. He is so caring and loving as he answers Patrick's questions about how much time he might have left. And then, five minutes later, has to tell Patrick for the fifth time, there are too many tumors to be able to remove them surgically, and he is too ill to survive this disease. The social worker and the chaplain, both young women, come for weekly visits. They put Patrick at ease enough so that he talks to them about his concerns about me and how I will manage after he is gone.

As for me, I think I should get an acting gig when all this is over. Somehow I almost always manage to keep myself together, and wear a smile for Patrick when I am at his bedside, even though inside my heart is breaking, and after I retreat to my room, I cry gallons of tears to let a little of my pain out. He seems to know when I have fallen apart, as he sends kisses and hugs to me through Gwen. Even though every moment with him is precious, I often cannot enter his room, as my grief about losing him is unbearable. Thankfully, my enormous love for him allows me shake off my numbness and spring into action the minute he is suffering. I dread the possibility that major organ failure, a perforated trachea, or some other catastrophically violent medical event will precede his final breath. And, I fervently pray for the strength to do everything in my power to help his end be peaceful.

For now, Patrick can still move his head and legs a little. Sometimes he has trouble talking. He knows what he wants to say, but his brain does not allow his mouth to speak, and he feels frustrated. He sleeps a lot. He enjoys listening to music. We estimate he weighs around 110 pounds, as we desperately battle his wasting away syndrome. He can no longer get out of bed because all the muscle mass in his body has been burned to provide energy to his vital organs. He can no longer tolerate the weight of his frail body pressing on the tumors on his spine to be in a regular bed, so he now floats on a mattress filled with chambers of air. Sometimes he has a lot of mental confusion, and other times he is clear headed. Well, as clear headed as one can be who needs opioid narcotic medications, around the clock, to manage the excruciating pain caused by the baseball-sized tumors invading his vertebrae. The tumors are crushing the nerves, and pressing on his spinal cord. He also has tumors compromising his trachea (wind pipe), his heart, and the upper lobes of both lungs. Ironically, his esophagus is now cancer-free. Seems the chemo and radiation killed the cancer in the original tumor. And, for three months, mid-June through mid-September, he was mobile and pain-free, before the cancer spread to other places in his chest cavity and to the vertebrae of his thoracic spine, up between his shoulder blades.

The first week in September, Tim and Barbara took me and Patrick to vacation for a week on Galveston Island, where we had a great time staying in a condo right on the beach. At night, alone in the pool, we danced what turned out to be our last dance together, as Patrick sang, "Under the Boardwalk" to me, which he said was one of his mother's favorites.

Twelve days later we learned the cancer had spread, and our world shattered. Up until then, we both believed he would beat this dreadful disease.

I have told him how he has made me strive to be a better person, and how grateful and lucky I am to have had him in my Life. I have reminded him that he leaves a powerful legacy behind in the lives of all the people he has touched and nurtured. He will be remembered as having been a great man, the best uncle, the best brother, the best friend, and the best father to so many troubled children that have needed and remain grateful for his love. He was unable to speak when I told him these things.

Later, he told me he wished I had been his first love, and had been able to spend the last thirty years together. I believe that to be a perfectly beautiful wish.

In closing, I share with you one of Patrick's favorite songs (lyrics below.)

FOR A DANCER
Originally from the album: Late For The Sky(1974)

Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real by playing the clown
Now you're nowhere to be found

I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear playing right in my ear
That I can't sing
I can't help listening
And I can't help feeling stupid standing 'round
Crying as they ease you down
'Cause I know that you'd rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning you might have found
Don't let the uncertainty turn you around
(The world keeps turning around and around)
Go on and make a joyful sound

Into a dancer you have grown
From a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive
And the time you go
May lie a reason you were alive
But you'll never know

Written by Jackson Browne
(c) 1974 SWALLOW TURN MUSIC

Patrick UPDATE

Dear Friends:

There is cause to give you an update on the status of Patrick’s medical condition. Two days ago, Patrick and I went to see the oncologist to learn the results of the PET scan that was performed last Wednesday, 15 September. The previous scan on 17 June revealed no abnormalities. Best-case scenario was that the radiation therapy and chemotherapy, which he endured from February through May, killed all the cancer. Both Patrick and I were feeling quite hopeful the results of this latest scan would reveal the same.

Just a week ago, the gastroenterologist performed day surgery to scope Patrick’s esophagus. Afterwards, he reported the inside looked normal, almost as if no disease had ever been present. Upon hearing this, I burst out crying tears of joy. So, we really expected to learn more good news: the PET scan would confirm the cancer was gone.

With my heart filled with immeasurable grief, I share the dreadful news that the cancer has metastasized, which means it has spread and it is no longer just contained inside the tumor surrounding the outside of his esophagus. Active cancer was found in a lymph node positioned against his trachea (windpipe), another an inch away near his heart sac, and a third on the backside of the tumor very close to his spine. The cancer has also invaded vertebrae of his thoracic spine, (the area between his shoulder blades.) We were told esophageal cancer is a very fast-growing cancer, and once it spreads to bones, as it now has to his spine, it is incurable. The oncologist speculates Patrick might live another nine months.

The doctor told us even though great strides have been achieved in curing many types of cancer, none have been realized for esophageal cancer. For instance, Lance Armstrong had testicular cancer, which had spread throughout his body and even to his brain. The drugs used to treat that type of cancer provide a very effective cure, 95 percent of the time. One of the drugs used in the standard of care for treating esophageal cancer, 5-fu, was patented in 1957 and has been the lead drug for 40-years since.

The only real option available from Western medicine from this point forward is narcotics to manage pain. Another round of chemo, at best, might slow the spread of the disease, but cannot stop it from progressing. Also, the first round of radiation and chemo left Patrick with severe damage to his lungs and the ability for his bone marrow to replenish blood cells. We are told any amount of radiation to his chest would be lethal and therefore, not an option.

We spoke with the oncologist about (and she is okay with) Patrick wanting to pursue wholistic health care options, such as Traditional Chinese Medicine practices and herbal remedies.

Patrick is concerned, upon hearing the news of his current prognosis, many of you may “feel more upset than necessary.” He has asked that I convey to you the following. He is utterly convinced this is not his “time to go,” and steadfastly remains committed to maintaining a positive outlook. He has every intention of recovering from this disease, and, his unwavering faith provides a constant source of strength.

Patrick is, and always will be, my greatest earthly blessing. And, I am trying very hard to be brave, reflect his optimism, and convince myself I have no reason to feel terrified.

The Pain Ray-Our Federal Tax Dollars at Work!

The Active Denial System

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My Review (on yelp.com) of Seton NW Hospital in Austin TX

After reading RAVE reviews about this hospital, I feel compelled to write this, my first ever, review. If only my hands would quit shaking. My dear husband, who remains my greatest earthly blessing, may lose his life because of unbelievably poor treatment he experienced. After numerous trips to the ER (more than 5) with the chief complaint of pain in his chest (not throat) while swallowing, a CT-scan showed a tumor in his chest the size of my fist. This tumor was completely encircling the outside of his esophagus, squeezing it almost entirely shut, and crushing his windpipe into the back of his breastbone. He was told he needed his "throat scoped" right away. After explaining he had no health insurance coverage and no primary care physician (PCP), Patrick was told by the doctor to come back in a week if he was unable to get this test done, as the size and placement made this a life-threatening condition. We spent the next week calling every clinic and doctor we could, getting no help. We live in a part of Austin that is in Williamson County, so we called the medically indigent program, and were told it would take 5 weeks to be assigned to and get a PCP, who would then make a referral to a GI specialist. We went back to Seton NW, and this time we told the ER doctor my husband needed his throat scoped and that we could not get the test done anywhere else. The doctor replied, "Having a tumor in your chest is NOT an emergency. We diagnose breast and other cancers all the time and send folks home." He went on to further tell us as soon as they could bring down his elevated blood pressure, he would be sent home. It seems that hearing the cold and uncaring statements from this ER doctor had a lot to do with my husband's blood pressure not stabilizing, because they decided to admit him. Upon learning we had come to the ER this visit because my husband needed an endoscopy of his esophagus, the admitting physician (not the ER doctor) called a GI doctor and arranged for the endoscopy to be done the next day. The test showed malignant cancer. The GI doctor giving us the bad news was visibly shaken, explaining my husband should have been diagnosed a year earlier, during any one of his many visits to the ER with the same symptoms, when the cancer was still the size of a pinto bean and CURABLE! Now, more than six months after the diagnosis, my husband has undergone and completed radiation therapy and chemotherapy. He almost died twice during chemo, which had to be administered around the clock, in the hospital for 5 days at a time, every third week for three and a half months. We did not go to Seton NW for these hospitalizations. I can barely drive by the place without bursting into tears. Now, my husband faces an Esophagogastrectomy, which removes the tumor and his entire esophagus below the tumor, even though below the tumor towards his stomach is disease free. He will lose his stomach, too. They have to harvest his stomach to attach it to the bottom of what is left of his esophagus, for it to serve as an esophagus. His stomach will no longer function as a stomach, dumping food, mostly undigested, directly into his small intestine. After this surgery to remove the tumor, he will never again be able to eat and digest food normally. But, never mind that his "quality of Life" will be drastically reduced, the statistics show WITH the surgery he only has a 50-percent chance of reaching a 5-year survival mark. His surgery was scheduled to happen 6 weeks ago. Exactly when the surgeon picked up the scalpel, my husband had a case of PROFOUND anaphylactic shock from one of the drugs he was given and his face swelled up like a basketball and his BP dropped to 45/20. The surgeon called off the operation telling us that maybe the accident in the OR was "a sign" for my husband to rethink having the surgery to remove the tumor. He went on to say that not always, but most of the time, after the surgery the pathology on the tumor comes back negative for active cancer. Which means the radiation and chemo- therapies did what they were supposed to do and killed all the cancer in the tumor. The surgeon and the oncologist both checked and cannot find any statistics on cases where the patient did not have the tumor surgically removed. We do not know what to do next. It is hard for me to cope knowing my husband did not receive a timely diagnosis just because he did not have health insurance coverage. Yes, I have proof of this, and no, I cannot sue them. It seems doctors have a hard time testifying in court because they might lose their "practicing privileges" at the hospital where my husband failed to get the care he deserved. It is not about retribution anyway. Just know: each time he went to the ER his complaint was the same and we were truthful about having no doctor or health insurance.

A Long and Winding Road

This is the story about what is happening to a friend of mine. His name is Patrick, and he is 52-years old. He is a true gentleman, as kind and generous as they come. He would give his coat or lunch to you, if your need was greater than his own. As a young man, thirty years ago, he held a high security clearance, which enabled him to be assigned to repair and maintain the computers in the Pentagon, White House, and National Institutes of Health. From that job, he has a private employer retirement fund, which is inaccessible until retirement age. The account has no clause for early disbursement for those disabled, facing a life-threatening illness. His entire adult life has been spent repairing computers.

It is enormously frustrating, and terribly frightening, to try to access healthcare when one has no medical insurance. Most people do not know that everyone (except those with end-stage renal failure) who becomes 100% disabled, prior to retirement age, is excluded from receiving Medicare healthcare coverage for the first 24 months after they become 100% disabled!

You will receive your Social Security disability monthly benefit payments, but no Medicare healthcare coverage. They count on a certain percentage of folks dying during the 24-month exclusionary period, so they end up only having to provide Medicare to the ones that manage to survive. For Patrick this situation is almost certainly a death sentence.

Stories like the one below, describing Patrick’s illness, are becoming unconscionably common.

On 15 January 2010, Patrick, having been admitted to the hospital the night before when the pain in his chest became unbearable, received the news that he had malignant, cancer of the Esophagus.

The news was delivered by a visibly distraught gastroenterologist, who had been called at 10:30 P.M. the night before, by an ER doctor with a request that he come the next day to “scope the throat” of a patient.

After finishing the procedure, the gastroenterologist went to talk with Patrick and diagnose his illness. He shared that he felt deeply disturbed that Patrick had not been diagnosed “a year earlier” during any of his previous ER visits, when the cancer was almost certainly curable.

Patrick told the doctor that it was a miracle that he had been called in, at all, to do the endoscopy. The night before, the ER doctor had told Patrick it was “not an emergency” to have a tumor in his chest, and that he was to be sent home as soon as they were able to bring his blood pressure under control. As it happened, hearing this very cold and uncaring statement probably had a lot to do with Patrick’s blood pressure remaining high, which resulted in him being admitted to the hospital.

Exactly one week earlier, on 7 January, Patrick had gone to the ER, the 6^th visit in the past year and a half, for “pain in his chest when swallowing”. An EKG of his heart confirmed the pain was not due to any heart problem, so they were planning on discharging him to go home, saying he must be suffering from acid reflux. The ER doctor decided at the last minute to do a CT-scan of Patrick’s chest, to compare to one that had been done 13-months earlier in December 2008.

The scan revealed a tumor the size of an apple, in his chest, which was most likely cancerous. It appeared to be completely encircling the outside of his esophagus and squeezing it shut. The size of the tumor was touching both lungs, pushing into the pericardial sac, and also crushing his windpipe (trachea) against the back of his breastbone.

The ER doctor told Patrick he needed to have an Endoscopy performed on his Esophagus “right away”. He also told Patrick to come back to the ER in a week if he was unable to get this test done, because the size and placement of the tumor was life threatening.

After listening to the whole story, the gastroenterologist, knowing Patrick had no health insurance coverage or primary care doctor, said he was going to personally refer Patrick’s case to the best Oncologist/Radiologist team in Austin, which he did. These three doctors prove there ARE angels among us.

Patrick underwent a very aggressive regiment of chemotherapy and radiation, from the beginning of February to the end of May. His body was ravaged by the toxicity of the treatments and he almost died on more than one occasion. During treatment he was left so weak he often had to hold onto the wall just to get from one room to another at home. Even now, several months after completing treatment, his white and red blood cell counts remain below normal.

The next step in the “standard-of-care” treatment of esophageal cancer is surgery. He has a 50-percent chance of living 5-years or more, if he has the tumor in his chest removed, now that the chemo and radiation have shrunk the size to where it is operable. He has only an 11-percent chance of reaching the 5-year survival mark if the surgery is not performed.

Right now he needs his throat scoped again to check the inside condition of his esophagus and to biopsy the tumor ($2,200), and, in a month he needs another PET scan ($4000) to see if the tumor has any remaining active cancer cells. These tests will help determine if the surgery must be done right away, or if it can be put off for a few more months to allow Patrick’s body to heal, and for him to regain some strength.

Between the disease and the after affects of treatment, Patrick is faced with new health problems.

At least half the folks with esophageal cancer die from malnutrition. Patrick suffers from nausea everyday that makes him not want to eat. He has a feeding tube (a PEG) inserted through his abdominal wall directly into his stomach, to receive liquid nutritional supplements. The PEG tube is hooked to a delivery bag, which is connected to an electronic pump, both of which are carried around with him in a special backpack. This setup allows two ounces per hour of nutritional supplement to be delivered, for up to 18-hours at a time. He needs 4 to 7 cans of liquid nutrition a day, depending on how badly the nausea interferes with his ability to eat food by mouth, and keep it down. A 24-can case of the liquid nutritional supplement costs $90, and was paid for by Medicaid, as was the monthly rental ($201) of the electronic pump and all the related supplies, such as the delivery bags and tubing.

A PICC line inserted into a vein to keep it open in his upper arm was used to deliver the chemo drugs around the clock. A blood clot formed at the site, and the PICC line had to be moved to his other arm. In order to dissolve the blood clot, Patrick has to have two shots a day for six to nine months, of a drug that costs $1,000 a day. In addition, he must take nine prescription medications daily, excluding any pain meds.

As if Patrick did not already have enough serious issues with which to contend, he is now confronting a new, very serious, one. He lost all Medicaid healthcare coverage (even for his medications) on 31 July.

It seems absolutely ludicrous for this to occur, right? One might ask, “What went wrong?” or, “Who dropped the ball?” This is actually the way the “system” is designed to work, or not work, as the case may be.

Since Patrick lives in a part of Austin that is in Williamson County, in January when he could no longer work and his illness was diagnosed, he applied, and was approved, for WILCO. This is the medically indigent healthcare program, which serves poor people who have no health insurance coverage, no assets, and no financial means to pay for health care. WILCO has a payout cap of $30,000 per person per year, which is the same benefit amount as in 1972, the year the program was first implemented. The cost of the diagnostic tests and procedures exhausted the WILCO payout cap for Patrick, even before treatment began on 9 February.

Also back in January, Patrick applied for Social Security disability benefits. Cancer of the esophagus is on the list of diseases that are so serious, one is automatically qualified, upon verification of diagnosis, for the designation of 100-percent disabled. He also applied for SSI benefits at the same time, which would provide him with a very small, monthly benefit amount during an automatically imposed, 5-month exclusionary period. This exclusionary period is imposed for the five months between the time the Social Security Administration makes a determination one is 100-percent disabled and the month one would receive their first monthly disability check.

When Patrick applied to the Social Security Administration, he requested an expedited determination, and received notice at the beginning of March that he was eligible for benefits. First, beginning right away, Patrick would receive SSI payments in the amount of $449, for five months, ending in July. Then, beginning 3 August, Patrick would receive Social Security disability benefit payments in the amount of $2077 per month. The amount of his monthly disability check is based on the amount of money he paid into the Social Security system during all the years he worked.

Patrick was eligible for Medicaid healthcare coverage only because he was receiving SSI, during the 5 months he was waiting for his Social Security disability benefit payments to begin. It should be noted that WILCO was able to get fully reimbursed by Medicaid, once Patrick’s SSI was approved in March.

This is how it works in Texas. If you get Supplemental Security Income (SSI) monthly benefit payments, you get Medicaid healthcare coverage. When you begin to receive Social Security disability (RSDI, formerly known as SSD) monthly benefit payments, your SSI stops and you no longer get Medicaid healthcare coverage. Then, you have to try to stay alive for 24-months with NO access to healthcare coverage, not even for medications, beyond what you can pay for yourself, before you are eligible for Medicare healthcare coverage.

For Patrick, this means he has no way to keep a roof over his head (he lives in a rented apartment) and pay for just SOME of his prescription medications. There is no money (or funding from any source) to pay for lab work to monitor his blood counts, diagnostic tests such as X-rays, CT-scans, or PET scans to monitor any progression of his cancer, or office visits to the doctors providing his care.

One might ask, “What about re-applying for WILCO, since they got reimbursed by Medicaid?”

Oh, yeah, the amount of his disability monthly payment is too high for him to qualify.

Members of the general public (and apparently, members of the Texas Legislature) THINK there is a safety net of healthcare services for those in our communities that are in dire need, but there is not. There is only a mere illusion of a safety net -- that proves to be "too little, too late" to really help anyone faced with a life-threatening illness.

This really is a VERY sad story, isn't it? But there is one part that makes it absolutely horrendous. And, it is even worse than booting him off of Medicaid, or excluding him from receiving Medicare for the first 2-years after becoming disabled. Patrick went to the same ER for over a year with pain in his chest while swallowing. And, because he had no health insurance coverage, they did not scope his throat while the cancer was a lesion the size of a pinto bean, still contained inside his esophagus, and CURABLE.

We all know we should take life one day at a time, and not take for granted all the little blessings that occur in our lives. We have a choice, while Patrick does not. He is robbed of having the time and energy to marvel at a sunset or stop and smell the roses. The daily burden of shouldering his pain and suffering is staggering, and yet, is seen only by those few who come close. It is a certainty that if he has a tomorrow, it will be filled with fighting nausea, exhaustion, and pain, struggling with feeding tubes, trying to swallow pills, and tolerate injections. And yet, if you meet him in passing, he never lets on that he has any challenges at all.

There are untold numbers of others, who have no money and no health insurance coverage, in every community struggling with the same burdens of battling cancer as Patrick. They put up a valiant fight to have the opportunity for one more year, month, or week in which to see a loved one smile, get a warm hug, watch a good movie, play a game of chess, or go hear a favorite band perform. We should be cheering them on, encouraging every little success, and doing as much as we can to help ease their pain. But we don’t.

Instead, we have healthcare laws and regulations that result directly in increasing their pain, while simultaneously pushing them closer to their death. How do we change this? Someone please tell me.

Who among us thinks it okay that people like Patrick with no healthcare insurance are sent home from the hospital without receiving the diagnostic test or care they need?

Did you know there is no remedy, or appeal available, to restore Medicaid healthcare coverage to Patrick, or to remove the 24-month exclusion that prevents him from accessing Medicare healthcare coverage?

Who decided Medicaid benefits should not continue up until the time Medicare benefits are activated, to cover the medical needs of a person battling cancer (or any other disabled person)?

I tell (or, write) the story of what is happening to Patrick to as many people as I can, for a reason. Nothing will change for the better if we do not talk about it, and make access to healthcare the topic of conversations with our families, friends, colleagues, neighbors, and politicians.

I ask myself every day, “What can I do to bring about change that will benefit Patrick in his battle against cancer?”

“Is there anything you can do?”

“What can we do together?”

Forever and ever and ever