Thursday, March 21, 2013

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.


  1. My heart stops a little at the "H" word also. I have several music therapy friends who work/have worked in hospice and the reason music therapy can be in demand there is because of the high stress the patient is under. Thank you for the updates!

  2. Sending all my love to you all tonight...

  3. All of our love and prayers go out to each one of you. Dale, Joe, Lauren, Jacob: Our family loves you so much

  4. I just found out this was happening. If there is anything we can do for you guys, don't hesitate to ask.