Tuesday, January 29, 2013

Being alive

Still Joe... (seems I've highjacked Lynn's blog - I hope that you and she will pardon me)

Jacob woke up over an hour ago to tell me that he had a bad dream.  I walked him back to his room, tucked him in and sang him a song.  He was asleep again in moments....  I'm still awake.... with my mind racing.  I've stolen some of Lynn's Ativan, and I'll soon sleep too.  In the meantime, I wanted to put to paper some things that I wanted to say to Lynn.  Of course, there are things in these circumstances that are too private to write in so publicly.  But I have some philosophical thoughts that, while some are deeply personal, seem like they could be okay and applicable to whatever place you may find yourself.

In a phrase, I want Lynn to live.  Of course, that means the literal sense that I want her to survive, to beat this illness and to enjoy all the experiences of a long life that we all anticipate.  But I also mean it in  an immediate sense that I hope she can attain even if we don't get to enjoy this life together as long as we had hoped.  I want her (and us, all of us no matter how affected by this or whatever other crisis may afflict us) to get out of every moment every bit of life that is available in it.

It would be stupid and insensitive for me to communicate this sentiment as an expression that she should not ever be sad, to just buck up and be happy.  There are moments when grief is the most living feeling that we can experience.  Most of the time, I've settled into a management mode of helping to keep track of medicine and to learn of methods (both conventional and "integrative") that could help Lynn to become healthy again, not to mention keeping up with my occupation and managing the everyday affairs of the home [many thanks to all of you have helped in those regards].  The moments that I've been least alive have been when I have numbly went about my busy work without feeling a thing.

I've had my moments.  Holding Lauren's hand while she cried herself to sleep the night that we told the kids that Lynn was sick again.  Random moments: losing it for no apparent reason one morning when getting ready for the day.  There was one morning when, instead of my normal exercises that I've been doing (trying to take care of myself), I laid flat on the floor and performed some simple yoga relaxation exercises that I learned in a college class.  I listened to a Pandora station playing the kind of soothing New Age music that you might hear in a massage parlor.  A song came on titled "Saying Goodbye".  In that relaxed state with all of my guard down, when I saw the title I wept as I had not wept since the days almost twenty years ago that I grieved my mother's unexpected passing.  When my weeping had passed, I was able to resume and finish the exercises with a clear spirit, cherishing the things that have been lost, could be lost and (we hope) may be regained.  I also felt keenly how so many blessings that I still maintain and felt joy for them mixed with my grief.

Moments to acknowledge our fears and sadness seem healthy and cleansing as long as we do not let them consume us.  Honestly facing those deep emotions allows us to connect to the values of why they are so deep.  If you never grieve over a thing lost, you never really valued it.  And I think that a person incapable of grief may also be incapable of truly valuing the good things in life.

On the other side, I suppose that a person too filled with grief could be similarly accused of not valuing the good things that surely must remain.  Joy seems a much more valuable and positive way to express the value we assign to our blessings.  It's hard as well as inappropriate to judge what is the proper mix of these polar emotions in hard circumstances.  If we think that a loved one has too much grief and not enough joy, we may share in their grief and do what things we can to introduce joyful moments.  I promise to do that, to grieve when that is what's needed and to introduce moments of joy by word and action in every other moment for which I have the energy.

Lynn has been courageous in her response to her illness.  There is no rebuke meant in any this.  Nor is there any particular thing that Lynn has said or done to prompt this flow of thoughts.  I have been heartened to see her be healthy enough to entertain friends and to spend time with family.  There have been other times when she has not felt well enough to do those things, and all of those who love her hopefully respect how she has been working through her grief, physical ailments and every other mix of emotion and pain that is so personal to her.

I fear that my thoughts have rambled, but I'll leave this as a stream-of-consciousness piece (maybe the only possible writing style at 4am).  To give some closure to my wandering thoughts, I intend to cherish life no matter how it is served or who is allowed to share it with me.  If the contemplated nutritional lifestyle changes work, I am hopeful that we will enjoy levels of health and fitness greater than we knew prior to Lynn's illness.  We may fear that she could live but with lingering serious health concerns.  If that is the outcome, I promise to find ways for us to live with the most dignity, love and joy that can be had by the circumstances.

And if cancer takes my dearest best friend, I will draw near to my children.  I will keep my friends close.  And I will grieve.   I also know from experience that grief does not last forever.  Though I remember and cherish my long passed mother, I only remember her now as a warm positive part of who I was and who I've become.

Lynn wants to be more than a memory!  I will fight to help her.  But if we live in fear of the bad outcomes against which we hope, we will never truly live.  Grieve and fear when we must.  But let's be sure to push grief and fear aside and have joy while the sun lasts (as it soon must rise whether I sleep or not!).  It's not enough to maintain a living, healthy body.  I want to live, to exist and to be happy in whatever circumstance I find myself in this life or in the next.  I hope that Lynn and all of you who are so dear to me can share this philosophy with me (wandering as it must be) and squeeze all of the joy out of the lemons that have been given us in life!

Sunday, January 27, 2013

Integrative medicine and diets -- IMPORTANT INFO IF YOU ARE PROVIDING A MEAL

Joe again...

Lynn's radiation treatments continue.  All in all, she is doing pretty well.  Her headaches are gone, and her vision has dramatically improved.  She had been blind in one eye, and now she can see with that eye with just a little blurriness.  On the other side of things, she has had some muscle weakness in her legs.  Still, she is able to get around and out of the house every now and then.

This past week, we visited an OSU doctor in the department of integrative medicine, Dr. Glen Aukerman.  He focuses on diet as a way to treat a variety of illnesses, including cancer.  He claims to have had a terminal form of cancer in 2001 that went into remission due to diet changes.  And he has treated a number of cancer patients whose cancer disappeared after several months of adhering to his regimen.

Dr. Aukerman's thesis is essentially that it takes many years (he throws out 10,000) for the human body to adapt to new sources of food.  Over the past 500 years, we have been able to start transporting food around the world.  Over the last 50 or 100 years, that process has exploded, augmented by genetic modifications and other changes to increase yield but perhaps with hidden health costs.

Check out his book:

We're adopting Dr. Aukerman's program.  He performed some pretty extensive blood work (he took 15 vials!), and he has recommended a number of supplements and dietary changes.

So we're relying upon traditional treatments to calm the immediate symptoms and to extend her life while we hope that a permanent cure can be had from the dietary changes.  It's a plausible hope, and hope is as necessary as any medicine to treat this disease!

So if you're reading this and you are planning to bring a meal (thank you!), you have some home work.  The diet is essentially gluten free.  Beyond that, take a look at the hand-outs that he provided.  We may be able to accommodate some non-compliant meals as the kids and I ease onto this same diet, but Lynn is going to begin to comply with it.  We're still learning our own way, so communicating could be challenging.  If you have any questions, please ask.

There is a notice at the bottom of these hand-outs, "Not for Duplication".  I'm not sure in what situation this was put in for, but I'm guessing that no one is going to threaten a cancer patient who is just trying to coordinate her meals!

Sunday, January 20, 2013

Sinus pain, backaches and blurry vision

This is Lynn's husband, Joe.  A few weeks ago, Lynn started to experience sinus headaches.  Since it was accompanied by congestion, we hoped that it was a sinus infection.  The clinic prescribed her an antibiotic.  Dayquil completely eliminated the pain.

Then she started getting backaches, and her vision began to get blurry in one eye.  By then, we were truly worried and got her in to see the cancer doctors and to get an MRI.  The scans came back and indicated that the cancer had moved to the spinal fluid that flows between her brain and her spine.  This is very bad news!

We started Lynn immediately on whole brain radiation.  She has had seven doses out of fifteen.  Her symptoms became progressively worse.  Her vision in her one eye blurred to the point that she needed to cover it.  And we're medicating to treat pain and nausea.

I guess that I'm to the point at which I'm in busy-mode.  Thankfully, her mom is able to be with us.  We are keeping a log of medications to help make sure we stay ahead of the symptoms.  And we have the cell phone numbers of multiple doctors.  [So thankful for the quality care that we are getting!]  There have been moments, of course.

We told the kids last weekend.  Jacob, who is only five, doesn't quite get it.  Lauren is eight.  She cried when we told her.  Later, as she was going to bed, she asked Lynn what "level" she is at.  Lynn told her that it is 4, and Lauren understands that means it is bad.  She was hit hard.  I prayed with her, provided a father's blessing, and she fell asleep holding my hand.

Meanwhile, our church has organized a group fast for Lynn's benefit.  I appreciate all of the expressions of faith and support.  Despite all of the pain and distress that we've experienced, we have been greatly blessed.  I try to take the philosophy that, whatever happens everything will be all right.  That's hard sometimes and especially hard for Lynn who is grappling with the possibility that her kids (especially Jacob) could have only passing memories of her.  I've promised her that, if it becomes necessary, there will be many of us who will remind them of the courageous soul that is their mother.  They will know her too through the wealth of photos and video that we have recorded over the years.

I almost wanted to delete that last paragraph.  I hope that you and Lynn will forgive the private view into these poignant fears.  We are dealing with the reality that this condition only sometimes responds to treatment.  At this point, I am hoping for one step at a time.  We have a vacation scheduled in the start of February to go on a Disney Caribbean cruise.  Serendipitously, Lynn's final dose of this round of radiation is scheduled the day before we are to leave.  The chemo medicine that is most likely to be administered (we need to complete some more scans before settling on the proper medicine) is administered bi-weekly, so she would not have to miss any treatments.  We just need to get her symptoms under control.  I'm praying first that we can take this family vacation.

UPDATE: About a week has passed since I began drafting this post.  I updated a few facts (seven doses of radiation rather than two).  And I guess that I'll leave the slight glimpse into our fears and immediate hopes.  I am happy to say that Lynn has responded well to the palliative treatment.  Her backaches are gone.  Her headaches and nausea are manageable.  Her visions has even gotten better.

Yesterday was a good day.  We were able to go to see a movie -- Lynn and me with my sister, Nancy.  And Lynn went to eat Jeni's ice cream with some friends.  It's great to see her up and around, and I'm becoming much more hopeful that we will be able to go on this family vacation.

Thank you for all of your many little acts of service and love.