Seriously, It Takes Time

I am learning patience.  Still.

11 months since Brian's cancer diagnosis.  10 months since his surgery.  6 months since the end of his radiation treatments.  He has come a long way.  He can walk on the treadmill again and drink liquids.  Haven't used the tube feeds for a long time.  Things are much better than they were, and yet things still seem a long way from where they used to be.

Is this the new normal?  A constant question, how much better will things get?  I feel deep down that he will continue to improve and still has lots of improvement potential.  Yet I realize that he may never be back to the same energy level he was before all this started.   So I continue to take life one day at a time.  People ask, "What are your plans for vacation?" and I just shrug and say, "Depends on how Brian is feeling."  I plan but I am emotionally prepared to change at a moments notice.

I guess that is the gift this whole experience has brought to me.  I am not wed to the future, I am more comfortable in the ebb and flow of here and now.

All Good Things

"...every thing which inviteth and enticeth to do good, and to love God, and to serve him, is inspired of God."  Moroni 7:13


We have Buddhist prayer flags hanging from our play set in the backyard.  Multi-colored and bright, they flutter in the breeze, saying their prayers.  Brian hung them up a month ago.  He can see their gentle waving from our bed as he lays there recovering from his cancer treatments.


I am not a Buddhist.  I belong to the Church of Jesus Christ of Latter-day Saints.  I am really very Christian.  Some might look at it and say, "Why would she have a heathen symbol in her yard?"  Or if they knew Brian put it up they may wonder why I didn't complain.  Complaining would be amazingly hypocritical of me, since I am the one who put the Buddha head statue back there several years ago.  Got that one from my Bishop; it was given to him by a good friend who had died but I think he felt a little uncomfortable having it in his yard.


So why do I have Buddhist things in my backyard?  To try to fit in with all my Buddhist neighbors?  (A lot of my neighborhood is Vietnamese.)  Because it is trendy and cool?  No.  Each item has its own reason.  I put the Buddha head there because I admire Buddhist philosophy - it's acceptance of life as it is and the belief one can bring change through changing ones self.  It resonates with my Christian beliefs of doing good because it is the right thing to do.  It resonates with my life experience that the only time I am truly happy is when I accept life is what it is and choose to be at peace with it.


Why did Brian put up the prayer flags?  I don't know, but I think it is a small way of reaching out to God.  As he watches the flags wave I imagine he thinks of prayers being said to God.  And I do believe that any thing which invites you to approach God is a good thing.  It is not the fullness of good, but it is good.


That is why Buddhist pray flags softly sway near a statue of Buddha in the back yard of this Christian house.


ALB

What Not to Say

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html

This is a great article in the NYT about what not to say, and what to say, to someone who is seriously ill.  And, I would add, to their family members.  The author went through cancer treatment.  His suggestions are spot on.  All the things I want to say to people but feel too polite to say.

I recall a time when I was in the hospital quite ill and in a lot of pain.  Five days into the hospital stay a newly consulted specialist walked into the room and said, "You look miserable."  I wanted to cry and hug her.  That was what I really wanted to hear, an acknowledgement of how I felt.  If you had asked me how I felt I would have said, "I'm hanging in there."  Which I was.  But it was miserable.  I try to remember as a physician that if I can't do anything else, I can always acknowledge a patient's suffering.  "This is such a miserable experience, I am sorry you have to go through this."

Compassion is the best medicine.

My Beautiful State of Denial

Brian has a sore in his mouth.

For anyone else I would say, "Big deal, put some numbing medicine on it, it will go away."
Life after oral cancer, however, is a waiting game.  Will it come back?  If so, where?  Will we recognize it if it comes?  A simple mouth sore is a pit in my stomach.

I have been living in a beautiful world of denial since Brian ended radiation treatments.  The hard part is over, the long road of recovery ahead.  Long, slow, but upward ... positive in direction.  My brain wouldn't even let me consider the possibility of relapse.  It is a peaceful place, this world of denial.  Not easy and not joyful, yet not filled with anxiety.
All it takes to crack the walls of my peaceful world is a little mouth sore.  At his surgical margin.

He already has an appointment scheduled with the surgeon for a follow-up appointment in 4 days.  Will I be able to see in the surgeon's face how worried he is?  Will he try to reassure us, yet walk out of the room with a pit in his stomach and feeling that this will not end well?  Will he take one look and say, "That is completely normal for this stage of healing"?  Whatever his response, he will be blunt.  And my world of denial will have to create new boundaries.

ALB
-----------------------
5/31/11 Update - saw the surgeon today.  He was cautious about the lesion.  Come back in 2 weeks, if it isn't gone by then he will biopsy it.  Seems fair enough.  Back to blissful denial.

6/14/11  Update - saw the surgeon again.  The spot looks better.  No biopsy, follow-up with the other surgeon at our regularly scheduled appointment in 4 weeks.  Back to blissful denial.

It takes time...

You know how I wrote that post about how the body heals itself?  And how miserable the radiation treatment's were?  Well, the treatments are all done for 2 months and the recovery is happening.  S-l-o-w-l-y.  He is talking well (I think).  Able to drink some by mouth and swallow medications rather than having to use the PEG tube for everything.  Walking without pain or walker.

As a physician I knew that progressive illnesses take a decline-plateau-decline-plateau pattern as they worsen.  I hadn't considered that healing takes the same pattern but in reverse: improve-plateau-improve-plateau.  But that is what is happening.  The improvement is great.  The plateau is freaky because it makes you wonder, "Is this it?  Is this as good as it gets??"

Statistics I have read say that only half of people feel back to normal 6 months after they end radiation and chemo.  This is reassuring since Brian is only 2 months out from treatment.  We will continue to watch and see how long the healing takes.

ALB

His Radiation Was Worse Than Yours - My Whiny Post

I will try to keep my whiny venting brief.

When people find out that Brian is having radiation for cancer treatment, they sometimes share a personal or family story of radiation.  I understand the desire to share, to bond, to help us know we aren't alone, others have tread this way before.  Having watched Brian go through the side of effects of radiation to his lower jaw and neck, I feel irritated when people tell me how a loved one worked every day through it, or how it wasn't that bad.  Getting your breast or prostate irradiated is lousy, I'm sure.  Getting your mouth and neck irradiated is horrendous.

The radiation damage in the mouth and neck causes swelling and pain that begins a couple weeks in.  Over time the lining of the mouth begins to ulcerate.  The muscles of the jaw and neck become inflamed.  Every movement of the mouth to speak or chew causes pain.  Every bit of food into the mouth causes pain.  Every swallow of anything causes pain.  And the radiation damages the nerves of the tongue, causing loss of taste.

Brian loves to talk and Brian loves to cook and eat.  Radiation took both away.  He lays in bed exhausted and silent with the whir of the feeding pump in the back ground.  All I can do is look on and keep his medications renewed.

So forgive me if I am not uplifted by your story of radiation treatments being bad but manageable.  Here they are horrible.  But like everyone else, we will get through this too.

Rant off.

Heal Thyself - or rather, Just Let Thyself Heal

The human body has amazing powers of self restoration.

I have known that for years.  Little cuts don't bother me, I don't think every little cut needs a bandage.  (My kids on the other hand do.  Thus the rule fun band-aid if it is bleeding, plain brown band-aid if there is no blood.)  I'm not bothered when my kids eat stuff off the floor.  Or occasionally out of the trash can.  Coughs, colds - no big deal.  I have even refused to pick up a child from school who had fallen and bumped her head.  She sounded fine, I told the nurse to send her back to class.  More often than you realize your body has prevented horrible disaster through the efforts of the many healing substances in your blood.  And don't get me started on how much DNA your body repairs due to sun damage.

This is not at all to say I am opposed to modern medicine.  I am a physician, and I also marvel at what we can do.  Being a pediatrician, immunizations stand squarely above everything else as the most amazing medical advance.  They have saved millions of lives through preventive medicine - the best kind of medicine there is!  People don't even realize their life was saved because they never got sick in the first place.  Preventing infection through immunization is something that we take for granted these days, but something our grandparents marvel at, and something our great-grandparents would have begged to have the privilege of doing for their children.  But I digress.  I started this to talk about what the body can do for itself.

As part of my husband's cancer treatment he had bone, muscle and skin from his leg removed to rebuild the site where the tumor was removed.  It was painful.  I mean, really painful.  He was on large doses of pain medications and would cry in pain if they were allowed to wear off.  After a few weeks of this I became concerned.  Why is he not healing?  Why is this taking so long?  And why are his doctors not worried, just tell me to keep giving pain meds?  We could get the pain under control with large amounts of medication. (I always teased him they were Elvis amounts, but not up to Michael Jackson amounts of pain medication.  Sorry if I offended anyone but when you are at the pharmacy every few days picking up more opiates you have to take a step back and laugh a little.)  The doctors just said, "It takes time.  Sometimes months."  So just when I resigned myself to months of heavy duty painkillers and the long wean that would follow, the pain improved.  I'm not saying we could suddenly stop all medications.  I'm saying his pain could be controlled with long acting medication alone and didn't need break through medications.

Where a large piece of bone, muscle and skin were missing, healing was happening.  Whatever had been so irritated or swollen and painful before was quieted, returned to a more normal state.  He started to be able to walk, even walk faster than me, though off balance and needing a walker.  Skin grew over the large surgical site.  Red, bumpy skin, but none the less an effective barrier to keep out contamination and keep in moisture.  Even more amazing, the site where the bone, muscle and skin were grafter healed beautifully.  It was never really painful as the nerves to the area were severed in the surgery.  But the skin grew pink and healthy, well perfused.  It is amazing to see how the surgeons know how to connect things, then stand back and let the body heal.

It helps me remember that as a physician I can't heal anyone.  I can prescribe an antibiotic but the body still has to return the site of infection back to normal, removing dead tissue and rebuilding.  I can set a broken bone but the body has to reconnect and realign the pieces of bone.  All of my interventions are mere tinkering, pushing things in ways that allows the body to heal itself.

That low back pain, that cold that is 5 days along, even that little pus pocket you drained yourself - most of the time these will get better on their own.  So next time your physician tells you "This one just takes time to get better, there is nothing more we need to do", what she is really saying is, "All things are in alignment for your body to heal itself.  Just give it time."

The Third Chair - life on the other side of the stethescope

My husband was diagnosed with cancer 4 months ago.  With apologies to the Grateful Dead, what a long, strange trip it's been.

Since he is still in the throes of treatment I am not yet ready to process this experience into a thoughtful analysis.  Instead I will share with you a jumble of my impressions of life as the physician spouse of someone dealing with the medical system.  And just my impressions of life caring for someone with cancer.

• I felt guilty when the doctor said, "It looks like cancer" - did I miss something?  How could I have not caught this earlier?  I do feel that I pushed when I felt things were not being followed up when I thought they should.  In retrospect the diagnosis to surgery time was pretty fast, though it felt agonizingly slow when going through it.
• When we interact with health care personnel I feel a need to tell the history, even though I know I should let my husband speak.  He frequently defers to me when I do sit back and try to shut up -- but have I just trained him to do that by my eagerness to speak?
• I feel a little guilty when we are treated very nicely by the hospital staff, like getting a private room.  Part of me wonders if they are just doing that because I am a doctor, part of me knows I wouldn't refuse even if that was the reason we got the good treatment.  I do feel better when I look around and notice other people being treated as well.
• I can't stop being a doctor and just be a spouse.  I make recommendations for treatments - please put dextrose in the IV fluids, please give Reglan.  I question treatment options, especially if it seems no different than what we've already tried.
• And then when I reach the limits of my medical knowledge, and my husband still has that "Please help me" look on his face, I feel guilty and frustrated.  I feel like a failure sometimes when we have to go to the hospital for non-routine treatment because I feel it means I failed at management. Is that the "doctor as god" complex, having a hard time admitting that I can't do it all?
• When he is inpatient I have dichotomous feelings - frustrated by having to wait for other people to act (at home I give the meds when I feel they need to be given), yet safe because if something is not going right there is someone else to turn to (if he vomits the med someone else can figure out what else to give).
• One of the big surprises is how many employees I see in the hospital and clinics that are parents of my patients (did I mention I'm a pediatrician?).  I smiled when the Gastroenterologist came out of the OR to tell me that the PEG placement had gone well and mentioned that "half the endoscopy staff said to treat your husband well because you are their pediatrician."

The one big advantage I have over other people going through difficult medical treatments is that I feel at home.  The geography and language of the hospital are not foreign to me.  I understand the hierarchies - I'm not afraid to ask someone where they fit in the team.  The ebb and flow of shifts, the difference between what can be accomplished during a day shift and a night shift.  This allows me to act as an interpreter for my husband, to try to ease his anxiety.  No, the nurse can't just change that medication from oral to IV, you must wait for the night float resident to answer the page and give a new order.  Yes, they will still take you to the OR for that procedure, even at 6pm.  I know which alarms on an IV I can fix and which I can't.

I am still deep under water with my head down, swimming hard to get through this as I carry my husband along.  But now when I look up, sometimes I can see a bit of light dancing on the surface of the water.  Then I have hope that end of the hard times is near, we will come to the surface and enjoy a large gasp of fresh air that will wash over us with wonder.

1 more round of chemo, 13 more radiation treatments to go.

ALB