The "H" word and finding the positive

This is Joe.  Lynn has been receiving a number of texts but hasn't been very responsive.  I think that it's time to update things here.  First off, if you are trying to contact us to coordinate something that needs a response, contact me.  If you do not have my contact info, leave a comment here and I will find a way to get it to you.  Otherwise, feel free to continue to send Lynn messages.  On good days, she may still check messages and might enjoy getting messages of encouragement.

Now for the tougher business... Lynn has experienced some new disturbing symptoms.  While she has done really well working with physical therapy to regain some of her strength, she has begun to experience cognitive effects, mostly mental confusion.  Sometimes she just says things out of the blue that are kind of off the wall.  She is up and down; sometimes she is just about all there.  But you can always tell that she is in a bit of a fog.  There's a lot more that I could say.  And tonight she had some more things going on, but we're going to chalk it up to fatigue and see in the morning.

This last Tuesday, we had a few doctor appointments to switch to a new intrathecal chemo drug regimen: methotrexate and cytarabine.  Doctors had seen progression while under the first drug and decided to switch.  I knew that the failure of one drug treatment is an ominous sign.  But Lynn had made clear that she wasn't interested in talking about the negatives of her prognosis.  Regardless, one of her doctors decided that he was obligated to tell her that he would recommend hospice if this next line of chemo fails to stop the disease progression.  We knew from the start that this is a devastating diagnosis with few treatment options.  But it was still a shock to hear that we could be that close to exhausting those options.  I have wanted to be informed and have not been able to resist researching Lynn's disease, so I had an idea that we could be near this point.  But Lynn was not prepared to hear this hard possibility and took it hard.

I am sorry that the news isn't better.  I know that so many of you have been praying and expressing your faith in other ways.  We're continuing to focus on the positives.  Our doctors are ethically bound to be realistic with us.  While realism portends poor chances, it also requires us to see that there is a chance for a good outcome.  Our doctors have been adamant that they would not treat if they did not perceive a reasonable chance of benefit.  The new drugs may work.

Positive factors in Lynn's favor:

1. The primary cancer was a breast tumor.  For whatever reason, metastases from breast cancer portend better responses than others (such as lung cancer or melanoma).
2. Lynn does not have significant cancer in other parts of her body.  The medical literature states that, when this condition is treated, death usually occurs due to other systemic factors since this tends to be a late stage metastasis.  Lynn only has bone metastases which are manageable in the very long term.
3. She is young and otherwise healthy.  She has demonstrated via her physical therapy progress that she is strong enough to overcome the damage that the cancer has done.

It's how I've explained to our children (with what I hope is an appropriate level of transparency): some people do die from this condition.  Some get better.  We still hope that Lynn can be one of those who get better.

My dad can beat up your dad!

HA HA!  Well he probably can.  Dad came down to Columbus so he could build me a ramp so I can get out of the house without relying on someone to carry me.  Now Katie and I can go out and about!  I should mention that Joe helped him too.  Thanks dad you are the best!  I LOVE YOU!

Ommaya reservoir

Lynn just came out of surgery to insert an ommaya reservoir.  The doctor said that everything went well.  Amazingly, despite having an object insert into the middle of her brain, this is considered a routine surgery.  As with any surgery, the greatest concern is infection with no more than 1.5% of such complications.

This device will allow doctors to administer chemotherapy drugs right into the brain.  Not only will this allow preclude the necessity of painful spinal taps, it will also administer the drugs directly to the location at which the cerebrospinal fluid is produced.  Hopefully, this will allow the medicine to be more widely distributed.

Very cool stuff!  We continue to be very grateful for the medical miracles that are employed to Lynn's benefit.

The past few weeks

Well some people might think we are crazy but we booked a Disney Cruise back in December (to celebrate my good health HA HA!) and we still decided to go even though I knew I would have to spend the whole time in a wheelchair.  

The medicine I am taking along with the full brain radiation has made me very week.  I can't go upstairs without Joe carrying me and walking is difficult.  It was hard to not be the hands on vacation mom I'm normally used to.  Joe did everything including taking care of the kids and me.  I was so week I could not go to the bathroom unassisted.  

We had a lot of fun on the cruise.  The kids had a blast and it was fun watching them enjoy themselves.  Thanks to the child care on board Joe and I were able to have some time to ourselves.  Disney made us so happy we would do it again in a heartbeat.  Next time we will leave the wheelchair at home!

  I think I have fallen more in love with Joe every day on that trip.  Honestly at this point I can't even think of words to write to express my feelings to him.  His support means everything to me.  As I was taking a bath I told him how sorry I am that I am sick.  Joe said it is his pleasure to take care of me.  We have been married for 10 years and we have a great marriage.  I think this cancer has brought us even closer if that is possible.

I met a woman on the cruise who had stage 4 breast cancer and she is in remission.  I was so happy for her.  I hope to have that someday.
I get a lot of cards in the mail cheering me on.  Sometimes they make me cry, not because they are not appreciated but because they remind me how sick I am.  Don't stop sending them though!  I love to get mail.
I am in awe of all the people who are continuing to help us.  While we were gone a group of girls came and cleaned our house.  It felt so good to come back to a clean house.  People bring meals most nights.  They are really good and they fit my new dietary restrictions.  Everyone around us is always asking what they can do to help.  My sister quit her job so she can help us with the kids.  She is so kind for making that sacrifice for us.  My other sister will be spending a week with us as well later on in the month.  My parents are here every weekend.  We feel so blessed to have our family close by while we deal with this cancer.

Now to the not so fun stuff.  I'm having brain surgery on Monday at 11am.  It's supposed to be a simple procedure.  They are placing a port in my brain so they can deliver chemo right where they want it.  I have to spend the night in the hospital and should go home sometime on Tuesday.  I had my first treatment before we left on vacation and the doctor had to do a spinal tap to administer the drug.  I think the port is going to be more user friendly for me.  The spinal tap was not pleasant.  So after the port is placed I will have chemo every 2 weeks for the next 5 months.  They will spread it out towards the end.  I haven't been given all of the details yet.  Dr. Shipiro may give me another kind of chemo.  We will see when we meet with him.

I was reading over my blog and I can't help but think that I sounded a little ridiculous at first.  Especially when I lost my hair.  I don't have any hair right now and I don't care.  Right now all I want is to be in remission and to walk and drive my car and cook dinner.  If I could do all those things and not have one strand on my head I'm sure I wouldn't give it a second thought.  I was also very confident.  That is something that I need to get back.  That is why I posted the quote.  I have spent a lot of time scared and crying this last month.  Confidence is a quality that I had before but I can feel it leaving. I may have to find a self help book for that one :)

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!

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:

http://www.amazon.ca/Better-Health-120-Days-Genomic-Specific/dp/1590980123

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!

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.