A Pause to be Grateful

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medical specialists, Medicine, Prostate Cancer, Radiation Therapy

At three thirty this afternoon, my wonderful husband Brian will take his last radiation treatment.  Some of you know that he has had prostate cancer, and that we’ve been working with doctors for the last eighteen months to enact a permanent cure.  I’m super busy today, but I just wanted to take a moment to express my thanks to the following people.

To the nurse at Christus Santa Rosa Westover Hills who made a bed for me in the hospital room at five o’clock in the morning after we’d spent the night in the emergency room to address the septic infection that resulted from the prostate biopsy.  I don’t know what your name is, but I hope the universe blesses you for your act of kindness to my weary soul.

Brian’s family physician, Dr. Lloyd Van Winkle, who consistently checked Brian’s PSA levels and referred him to specialists at the right time, but also knew when to intervene when Brian developed post-surgical Deep Vein Thrombosis.  His wisdom in this incident is especially appreciated.

For the insightful and wise advice of doctors from the San Antonio Urology Practice, with special thanks to Dr. Michael White, who performed the miraculous robotic surgery to remove the prostate gland. These doctors sit behind a screen and literally travel hundredths of an inch with the movement of their fingers.  In an area that is full of nerves and valves, a hundredth of an inch can make a real difference in a patient’s life.

Finally, to the doctors at the START center, who have made the discovery of left over cancer cells bearable for us through their willingness to give us their time and expertise.

Dr. Louis Rodriguez, our oncologist, spent a great deal of time talking with us about our options for treatment late on a Monday afternoon when he could have been home with his family.  After that visit, we started to feel a peace about pursuing radiation therapy.

Meeting our radiation therapist, Dr. Ardow Ameduri, was such a pleasure.  He took a great deal of time to explain what the radiation therapy would entail.  He even drew us pictures of the area so that we’d know exactly what the treatment would be like.  I sat in that appointment with a lump in my throat, and tears were dangerously close to the surface as the reality of more treatment sank in, but Dr. Ameduri’s calm and friendly demeanor settled my nerves.  At the end of the appointment, he provided us with his email address and his cell phone number.  Brian emailed him some additional questions after the appointment, which he answered promptly and with a level of technicality that satisfied my engineer husband’s needs. I don’t need to tell you how special and unusual that level of care and attention is in the medical profession.

None of us knows what the future holds.  Before we made this journey, I was familiar with the saying, but I now know it deep down in my bones.  Each day is a gift; and as we mark this milestone I want to publicly acknowledge my gratitude for another day with my wonderful husband, my family, and my friends.  I want to say to all of you that I’m thankful for everything God has given me.   I hope you have a blessed and peaceful holiday season.

Joni Koehler

p.s. Have your PSA checked.  I know it’s sort of a sensitive subject, but early detection and intervention have the best outcomes. Don’t assume that it’s just an old man’s disease.  Have regular checks, and women, the same message goes out to you.  Get those mammograms up to date!

Daily Discomfort: What Remains

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Cyber Knife, Low Residue Diet, Prostate Cancer, Radiation Therapy, writing

Super Husband finished his second full week of radiation therapy today, and has five more weeks to go.  The treatment is not painful, and so far his side effects have been minimal.  Once again, we are looking forward to the end of  his (hopefully the last) treatment for his prostate cancer.  Today I’m thinking about what I’ll take from this experience, and how it has already changed me.  When the doctor pronounces SH Cancer-free, what will remain?

The Low Residue Diet

For the duration of the treatment, SH is on a low residue diet to minimize the amount of gas in his system.  This diet is a little mystifying.  We normally eat whole grains and have a leafy salad each night at supper.  On the low residue diet, only white bread and some cooked vegetables are allowed.  Evidently, more resi-doo equals more residue.  I always thought high fiber foods that expedited the journey through the plume, so to speak, caused the body to hold on to less of its detritus, but I guess I was wrong. After two weeks, we’re falling into a pattern in which we both recognize foods to eat/not eat.  Tomatoes yes, (without seeds and cooked) corn, no, not in any form or fashion.  Summer squash, yes.  Winter squash, no.   This description is a problem, because we live in South Texas, where there is no winter.  When you go to the grocery store, there isn’t a sign by the squash that says “This squash is generally grown in the winter.” What about pumpkin? Technically, Thanksgiving, the pumpkin holiday, happens before the winter solstice.

If it’s questionable, we just don’t eat it.  Yes, I said we.  I’m on the low residue diet with him, because it makes cooking easier, because he’s my husband and I love him, and because this is one thing I can do with him. He has to do the difficult part all alone.

At times it feels like there is very little I can do to make his life easier.  However, I’ve been strong enough to sit in the chair at the doctor’s office and ask the hard questions without crying, to sit in the hospital, to stay up all night, and to act swiftly when necessary.  Prostate Cancer has tapped an unknown source of strength for both of us, and the knowledge of this strength in crisis will remain with us long after we’ve stopped living our lives around this disease.

The Cyber Knife

The top arm rotates around the patient.

I got to go with SH to his treatment this week, and the techs let me come in to see the machine they use to administer the radiation.  I asked if I could take a picture for my blog.  The tech said yes, but then hubby piped in, saying “No, you can’t take a picture of me with my pants down!”

The techs and I laughed, and I said, “I don’t want to take a picture of that same old thing. I want a picture of the machine!”  We all laughed some more.  The techs, who spend their day ushering in one person after another for this exact same task, said it was a conversation for the record books.

The Cyber Knife looks like something George Lucas might have dreamed up.  This giant hulk is designed to do a three hundred and sixty degree rotation around the cancer zone and, with pinpoint accuracy, deliver the exact dosage of radiation needed to kill the abnormal cells.

While I am praying that the knife cuts out the offending Cancer, I know that the laughter we shared will stay with us.  Hopefully, I can pay forward the compassion and empathy we’ve been shown in the years to come.

What’s Full, What’s Empty

When he gets to the radiation center, SH has to have a full bladder and an empty colon.  This has to do with the location of the cancer cells and the doctor’s wish to move the colon and bladder out of the radiation’s path.

This full/empty metaphor can apply to our emotional states as well.  Sometimes he is full of nervous energy, and he talks his head off at the doctor’s office, and I get nervous because he’s never nervous, and he never talks his head off and then I think there’s something more wrong that he’s not telling me and then I start poking and prodding, and he’s already been prodded enough and then before you know it we are squabbling and just like that we’re both taking those unspent emotions and spending them on each other like a sentence that’s too long but you just don’t know how to stop it.

When my grandmother was ill and dying, my mother told me something that I’ve carried with me through the year of having Cancer.  She said, “When you’re in a crisis, it’s best to have a long fuse and a short memory.”   My husband has always been the most patient of souls, with a sunny disposition.  It would be easy to hold the aberration of his temper against him for years to come.  I could point to it as a beacon when I’m vexed, the shining moment when he wasn’t his optimistic self.  But the residue of this experience is that some things are meant to be empty and some full.  I’ll empty my memory of the squabbles and fill my fuse with all the love I felt for him as he laid on a space age table about to get Cyber Knifed.

What Remains

As we pulled into the Cancer treatment center this week, a woman stood on the curb waiting for her husband to park the car.  She wore a pink skull cap, and it was obvious her hair was missing.  Entering the building, we encountered several people lounging in the lobby in wheelchairs, too weak to walk.

My husband has Cancer, and there isn’t a residue free diet I can follow to eradicate the new way I will forever approach the world.  But I’m not complaining. I know my good fortune, and am grateful beyond my ability to express it.

He has Prostate Cancer, but he can still walk, and he has all of his hair, and he isn’t waiting for someone to come and pick him up in the lobby of the Cancer Center.  His heart is still beating, he’s still here on earth sharing his life with me, and with our children.  He is what remains.

Daily Discomfort: On Crying

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crying, Prostate Cancer, writing

When I was a teenager, crying was my “go to,” emotional outlet.  I’d lay in the bed with my face to the wall and have an imaginary conversation with the party who’d wronged me.   Then, when I was all cried out, I’d manufacture some other cry worthy cause, like small children without enough food to eat, or lost puppies, or that movie I wasn’t allowed to watch even though I’m almost fifteen, or the way my friends got to go to the mall and I had to stay home and clean my room.  Like a marathon runner, I’d sprint for that last burst of tears.

Spent, I’d amble down the hall to the bathroom and stare at myself in the mirror.  My crying “tell,” a round red mark in the upper corner of my right eyelid, was the source of personal pride.  I had accomplished a historic level of histrionics, and it always made me feel…clean.

Now, I can’t cry like that.  My husband got sick, had a life-threatening infection, surgery, another life-threatening medical complication, then got sick again.  Now, he’s having radiation treatments for a cancer that isn’t completely eradicated.  This is the sort of thing people do cry about.  However, as much as I might want to, I can’t lay on the bed and make the tears come until that feeling of renewal comes over me.  Now, waterworks simmer just beneath the surface.  Like the symptoms of menopause, they appear at the strangest times.

I’m trying to find a clip from The Sound of Music to show during an upcoming presentation.  Maria and the Von Trapp children are singing, “Doe a deer,” running up the side of a beautiful mountain in Austria.  Suddenly, my throat is swamped with feeling, and hot salty water scalds my eyes.  I wipe my face with the back of my hand, take a deep breath, and shut it down.  It would be too ridiculous for a grown woman to go on a crying jag brought about by Julie Andrews.

I’m on the internet, trying to find out more about what radiation treatment will be like for my husband.  I discover a website where people can write about their cancer experiences.  I have to choose which cancer I want to read about.  The list of cancers, white lettering on a black background, goes on, on, on, on.  As I scroll all that black, all of those kinds of cancer, they come. The tears that feel like throwing up.  The tears that could take my finger out of this dam I’ve erected.  This damn dam.

The dam is there for a good reason.  This, what we’re going through, this is real.    My emotions are not a hair shirt I can wear under my regular clothing.  I’m sad, yes, but I’m also angry.  The dam helps keep that anger, and that will to survive, in the forefront.  We’re going to get through this, and when we do?  Then, maybe I can afford the luxury of a historic blubber.

Daily Discomfort: If you’re going to get Cancer…

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dumb stuff that people say, Medicine, Prostate Cancer, writing

Then Prostate Cancer is the kind you want to get.

She’s an acquaintance, and I suppose she is saying this to comfort me, to make me feel better.  But it doesn’t make me feel better.  I’m not the get angry right away type, and we barely know one another, so I finish the conversation with some mild defense of Prostate Cancer as an actual disease.  On the way home, the feeling bubbles up, and I’m driving down the highway ranting to my imaginary road buddy, Mz. Itchy.

So, if Prostate Cancer was a planet, it would be Pluto?  It’s on the edge of Cancer?  It barely even rates as real Cancer?  Any day now, the CDC or whoever decides what is and isn’t Cancer will downgrade it to one of the sub-Cancers?  It’s the sub-tropic of Cancer?  It’s so easy to cure and common that any day now people will be able to buy their Prostate Cancer surgery and radiation kits over the counter, like Nasacort and Zyrtec?  In that case, why did we spend all of that money to have a surgeon take care of this?  I should have just given SH a big dose of Jim Beam and attacked the area with a butter knife.  Maybe we can perform the radiation treatments on the back porch with a really strong varmint spotlight.  Is that what you mean?  Do you really mean to say that someone should want to get this Cancer?

Because I can tell you right now, Prostate Cancer is not the type of Cancer that my husband wanted to get.  He wanted to get a case of NO Cancer!  In fact, I think he would pretty much take cancer-less over cancer-full 100% of the time.

 

Original Artwork by me. Hold your applause, please.

Mz. Itchy did her job, kept her big mouth shut, and listened without comment.  After I wound down, I reminded myself that everyone is fighting some kind of battle.  Maybe the people who say stuff like this are trying to reconcile themselves to their own fears.  Maybe categorizing some things as better and some things as worse gives them a framework for understanding the world, or mitigating the more common obstacles as being easier than those that are more rare.

There may even be some truth to the idea that Prostate Cancer is not as life-threatening as other types of Cancer.   I don’t know about that.  Someone I love is living with this disease and all of its consequences.  That’s all I know.  I’ll let the experts wrangle over semantics. http://www.pcf.org/site/c.leJRIROrEpH/b.7425707/k.7A02/10_Myths_and_Misconceptions_About_Prostate_Cancer.htm

Maybe my reaction is all about me.  I have probably spouted some platitude that was equally upsetting to someone in my day.  Mz. Itchy thought the solution was a girl fight on the playground.  But hey, I’ve done the same thing, so I just have to let it go and move on.   This experience is my opportunity to learn that when people are hurting, they don’t want to brush up against a cliché.  “I’m sorry you are going through this,” is all I’ll say in the future.  And if I ever use the phrase, If you’re going to get________, then this is the kind of ________ you want to get, I’ll fill in the blanks with something good, like chocolate, or a puppy, or strong, or news, or love.

Daily Discomfort: Living with the Ists

Tags

medical specialists, Medicine, Prostate Cancer, writing

The only thing that makes me more uncomfortable than dealing with Cancer is writing about dealing with Cancer.  However, I promised myself that I wouldn’t have a blog that blinked.  I’ve put this subject off for two months now, and I have a lot to say.  So for the next four weeks, I’ll write about some of the experiences our family has had while navigating this foreign landscape.

I’ve taken to calling my life partner Super Husband on this blog, and I am not being ironic.  He’s the most supportive, loving, respectful, trustworthy, and helpful person I’ve ever met.   So when he was diagnosed with Prostate Cancer eighteen months ago, I was blown back.  This moment changed my perspective about work, happiness, security, and faith.   It changed the way I spend my time, the way I think, and my role in the relationship.  And when you are a caregiver to a person who is sick, one of the first things you begin to learn about is the Ists, the medical specialists who become an important part of the patient’s life.   And life in Ist-ville can be a bumpy experience for first timers like my husband and me.

The Urologists came first.  The original Urologist did a prostate biopsy, which resulted in septic infection and a four day hospital stay.  A second Urologist signed SH’s release from that stay and informed him of his cancer diagnosis.  A third Urologist performed a radical prostatectomy with a robotic device.

Deep Vein Thrombosis, or a blood clot, brought us into contact with the Hematologist.  We met this doctor for the first time during the third visit to a third hospital in three months.

The Oncologist and the Radiation Therapist are our newest Ists.  Nine months after the surgery, when the PSA (Prostate Specific Antigen) level started to rise, we decided to seek these two out for some advice on how to proceed.  So we’ve met, taken advice from, gotten treatment from, and listened to the opinions of six different medical specialists in the last eighteen months.

It’s easy to see how this could get to be a problem.  Except for the cancer, which hasn’t made him feel bad, my husband is in good health.  He’s relatively young. And even though he has had two major, life-threatening complications, things could be worse.

How would it feel to keep all of these doctors and their advice straight if I were 84 instead of 54?  What if one of us had dementia?  Poor hearing?  What if there were other complications like diabetes?  The speed with which the Ists could accumulate would be mind boggling.  Even if each specialist gives you the exact same opinion and advice about how to proceed with your medical case – and they don’t- it’s difficult just to put names and faces together.

For the most part, our Ists are calm and professional.  They have patiently answered our questions and indulged our attempts to learn more about the disease and treatments. But there have been times, especially when we were in the hospital, that I could see the Ist looking toward the door with longing, just wanting to tell us what happens next and get out of the room as fast as possible. These are the times when I have to channel the Dog Whisperer and summon my calm, assertive energy.  As my daughter stated in a recent conversation, “You just have to keep them there as long as you can and get as many answers as you can.”

One of the things I have learned from living amidst the Ists is to pay close attention to conversations with doctors.  After the visit, I always make an effort to ask Super H what he heard.  I write things down.  I take pictures of the board that has the nurse’s name and the date.  Communication is very important because emotions are high, and expectations for the visit may be different for everyone involved.  Clarity can save time and enable good decisions about treatment.

Another thing I didn’t do at the beginning of this journey that I do now is to stay.  If SH is in the doctor’s office or hospital, I don’t leave until he has seen all of his Ists.  This isn’t easy because sometimes Docs show up in the hospital after the normal day has ended.  Patients are in the hospital because they are sick, and the things they hear while lying in a bed may not be remembered after a long, drug induced sleep.  At 8 p.m., I feel like dropping the strong façade, but I don’t.  I can’t.  I won’t.  This temporary discomfort is paid back in full when my husband and I are able to make calm, rational judgments about his care.

I have no wish to bash doctors, and can empathize with the growing pressures they face in modern medical practices.  Sandeep Jauhar explicates some of these dilemmas in Doctored: The Disillusionment of an American Physician.    Here’s a link to an excellent review of that book.  http://www.npr.org/blogs/health/2014/08/19/341632184/cardiologist-speaks-from-the-heart-about-americas-medical-system

The medical profession is taking steps to address the Ist lists.  At least one of the hospitals we visited in the summer of 2013 assigned a patient advocate who oversaw the whole case.  I’ll write more about this particular hospital in the coming weeks, because one of the enduring take aways from this whole experience is the good in the world.  All along this journey, we’ve been treated with kindness, patience, and care that we may not have even known we needed.  My Super Husband has his first radiation treatment today.  We live in hope that his Cancer will be eradicated, and we are grateful for the Ists that have made a cure from this disease possible.