Dancing in the Rain

I didn’t meet my husband until I was 33, after breakup after breakup.

Then I barely had a wedding, and I didn’t have a honeymoon, because my mom got cancer.

I got married quickly between her surgery and chemo.  I got pregnant during her radiation.   We spent the year not knowing where my husband would live the next year, due to his residency match.  I popped a baby out when my mom was done with the next chemo, and spent eleven weeks recovering from having my nether half all torn up before my dad was diagnosed with terminal brain cancer.

It has been two years of storms, with no end in sight.  Perhaps the storms will never pass.  Maybe this is just how life is.  Maybe this is that “new normal” everyone keeps telling me about, with my mom scanning and my dad dying.

Maybe I should somehow enjoy the baby, in spite of it all.

I don’t normally go in for hackneyed inspirational quotes, but maybe

Dancing in the Rain

I don’t know what that means in practice, though.  This Memorial Day long weekend, I see everybody traveling and having fun.

I so want to go on vacation somewhere.  I’ve wanted to go for years.

I would like to see the sun again.

Advertisements

I used to think that other cancers were awful

Now I wish my dad had one of those, or any other cancer than he does.   Something that would not have touched his mind, until the end of the end.

His brain cancer has taken him away from us even though he is still alive.  It’s like having advanced Alzheimers or Parkinsons, except that it came on in weeks.  It’s like having a stroke, except that it got worse instead of better and it is likely to be terminal.

Does it get any worse?

Eleanor Roosevelt said…

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

I agree.  My mom’s cancer prepared me to face my dad’s, which is much worse.  I had seen her suffer.  I was already used to the fact that good health could be hiding, or could turn into, advanced-stage illness in no time flat.  I was used to scanxiety.  I had lost friends in support groups who were much younger than my parents; I had been around end-stage patients in the infusion room; I had accepted that we all die, that life is random and unfair, that sometimes lingering disease precedes death–and that one day it will be my turn.  I had crossed off the most important items on my bucket list–I had married and given my parents a grandbaby.

Now that my dad has cancer, the road is a road I have already traveled.  It hasn’t been easy, but the bumps are more familiar, and it is all easier than it might have been.

An interesting comic book on caring for elderly parents…

“Lucy Stone” wrote an interesting review on Amazon:

Whatever happened to those giveaways from banks; the blenders, toasters, clocks etc.? Roz Chast finds them in her parent[s’] closet. Ancient supersize jars of petroleum jelly, a drawer of jar lids, a “museum of old Schick shavers” and all the detritus of a life….What will our children find when our time comes…?”

http://www.amazon.com/gp/product/1608198065?ie=UTF8&camp=1789&creativeASIN=1608198065&linkCode=xm2&tag=thewaspos09-20

Links to some other sites and blogs on Primary CNS Lymphoma (PCNSL)

There’s a lot of medical information out there.  I wanted to compile a list of stories from actual human beings.

    • A PCNSL Facebook page, with comments from survivors.
    • Brenda Snyder’s Family Story.  Ms. Snyder recently passed.  I am grateful to her daughter for having shared her story.
    • Easing Off the Bridge,” by a PCNSL survivor.
    • Barry Gates, a four-time PCNSL survivor, has started a wonderful site with info about PCNSL.
    • Mr. Gates also maintains an e-mail list for PCNSL survivors and caregivers which I absolutely recommend that you join if you are either a survivor or caregiver.  The list presently has 71 people.
    • Lymphomartini by a late cancer warrior whose lymphoma had spread to his CNS.
    • My Family’s Experience with CNS Lymphoma,” a tribute by a son to a father who passed too early.
    • On this forum thread, Fins1970 describes his/her father’s journey and passing.
    • Mrs. Margaret Mary Anderson, in the comments below, has kindly provided a link to her late husband Joe’s CaringBridge page, in hopes that someone will benefit from knowing about the treatment that he underwent.
    • Geoff Hom’s blog.  His mom has PCNSL.  Mr. Hom is approaching his mom’s treatment with a scientific mindset.  Let’s all send her good wishes.
    • Blog entry by a nurse who had PCNSL.  She noted the delay in getting appointments with specialists at major cancer centers.
    • Public Figures who have had PCNSL
      • The late Mayor Bob O’Connor‘s medical team posted information as detailed as how many meals he was eating during his high-dose methotrexate treatment and where his liver enzymes were. Mayor O’Connor had a rare type of anaplastic T-cell CNS lymphoma. You can find a lot more via Googling. He survived two months.
      • Professional ice hockey player John Spoltore also passed of PCNSL at the age of 38. He survived seven weeks.
      • NASCAR driver Richard Petty’s wife Lynda Petty recently passed of PCNSL. She survived five years, until the age of 72, and had many grandchildren.

Here is a link to a CNN iReport from someone whose husband had PCNSL thirty years ago. Back then it was called “microglioma.”

If only Googling could actually help my father. We are in the hands of the oncologist now.

[Updated:  My father passed in 2014.  I hope this page helps someone else.]

I hate that this has become a blog about cancer.

I was hoping to blog about so many other things.  I was hoping to blog about my dear little baby.  Or my 35th birthday today, or my first Mothers’ Day as a mother tomorrow.

My mom’s first scans showed remission, but now my dad has a rare and horrible form of brain cancer, and my mom is his caregiver 24/7, day in, day out, as though he were a baby.  My dad’s state has been so bad I don’t even want to write about it as it is an assault on his dignity.   All I can say is that if I had a dog in the state my father is in, I’d have euthanized the dog and put it out of its misery.  Life is ugly when your brain doesn’t work.  I live in a perpetual state of guilt that I do not go to the hospital enough.  The main reason is that I have an infant, but the secret reason is that sometimes it’s harder for me to see my dad than not to see him.  I lost my father three months ago.  The person who remains doesn’t usually wake up when I come to see him, and when he does he doesn’t say anything, and he calls me by my aunt’s name.

We have no family history of cancer.  Nada.  I don’t understand how this could have happened to us–not once, but twice.  And right when I had a little infant–on her three month birthday, eleven days after I returned to work.

If my dad had died three months ago, I could grieve and move on with my life.  Instead he lingers in a state that is not-dad, as someone who cannot do the most basic things.  He has a week of chemo every other week–and the sliver of hope is almost worse than if the worst had happened, immediately.

We celebrate small things–“oh, today he said a few words,” or “today he remembered my name.”  And I cannot believe what he has been reduced to.

My life has just been storms, for two straight years.  I was looking forward to so many things, if/when my mom went into remission, only to be right back in the maelstrom.  And now I wonder…

  • Will I ever write again?
  • Will I ever be able to return to exercising?
  • Will I ever be able to move to a job I like?
  • Will I ever be happy again?

I am hanging on these days by the thinnest of threads.