It’s Dark in Here

Lots of you tell me that I am strong and an inspiration.  You like my positive attitude and generally good outlook.  But there are many moments and sometimes hours or days where I am hardly strong, positive or inspiring.  If I’m going to paint a complete picture of my life today I want to tell you about those times.

My emotions are often very close to the surface.  I cry easily.  Good things as well as bad make me cry.  My emotions roller coaster up and down.  Some of the lows are really low and those are the times when I think about my funeral and the bequests I’ll leave behind.  I also think about what it will be like for my family to go about their lives without me.  I think of them celebrating Christmas and birthdays when I won’t be with them.  I can’t bear the thought that I might not ever see the children my daughter wants to have some day, or that I won’t get to grow old with my husband.  When I’m awake at 3 a.m., 4 a.m. or 5 a.m.?  That’s because I woke up, started thinking about cancer and couldn’t go back to sleep.  I lie next to my sleeping husband and think and think and think and then I get up.

How often do I think about having cancer?  Pretty much all the time, almost every minute of my day.  I have cancer in my dreams now.  No break from it.  I’ve learned from the Facebook support group I joined that constantly thinking about cancer is very normal, even after a person is declared disease free.  That makes me feel better.  It’s always good to know I have company!

I listen to my iPod a lot (the Bob & Sheri and Matt and Ramona podcasts are two of my favorites) and I play a lot of hidden object games on my iPad.  I am a very active Facebook user.  I do my best to distract myself.   I have a hard time focusing on a book for more than thirty minutes at a time, something that makes me sad.  Reading used to be good for hours and hours of absorbing enjoyment.  My grandsons really raise my spirits and give me something wonderful on which to focus, which is one of the reasons I get so upset when I can’t see them.

One thing that weighs on me heavily is that I will always have to be closely monitored for a recurrence of ovarian cancer.  The recurrence rate is high and each time it recurs it can be worse.  Just recently I met a woman who had Stage I ovarian cancer in 2010.  She did chemo then, had a recurrence in 2013 and had chemo and now is having another recurrence and more chemo.  There are doctors (mine included) who say that ovarian cancer can be managed as a chronic disease, but the reality is that many, many women die of it every day, women in every stage of life, even young girls.  There is no going back to my former life.  Until the day something takes me from this earth, ovarian cancer monitoring will be a regular part of my life.  I will always live with the fear of a recurrence.  I see it on the Facebook group to which I belong—women who’ve been NED (no evidence of disease) for years but some pain in the abdomen or back or change in bowel habits dredges up the worry.

On the days when I’m feeling really tired from chemo, am queasy, can’t do something I want to do or find out one of my grandsons is sick and I can’t go visit I get pretty sad.  I was active before my surgery.  The spirit is more than willing, but sometimes the flesh is just too weak.  We spend a lot of Saturdays in the house because Saturday generally turns out to be a less than stellar day.  The effects of chemo are cumulative for some people and I’m beginning to feel weaker now.  I have to learn how to live with this gracefully.  It’s not easy!

I’ll bet you’re thinking that I need an antidepressant.  Well, I’m on one.  But there is a big difference between sadness and clinical depression.  I know one from the other.  Surprisingly my clinical depression has not reared its ugly head in the past three and a half months.  I was expecting it to come roaring back from its long (several years) dormant state.  But no, thank God!  I’m sad but not depressed.  And I’m not always sad.  It’s a temporary state for the most part. W can joke me out of my sadness or it simply passes on its own.  Being with my piano students is a wonderful cure.  I am always livelier when I’m working.  Being with my family makes me feel so much better.  It’s all in learning how to cope.

Today has been the worst day of all.  I was retching in the middle of the night, vomited this afternoon and in general have barely been able to keep my eyes open.  I slept twelve hours, got up for two hours and went back to bed for two more hours of sleep this morning.  I was dead to the world, so I know I needed it.  I don’t feel guilty about needing extra rest but I do feel annoyed.  I want to be doing stuff!  Today I was supposed to attend a political fundraiser for a friend and I just wasn’t up to it.  Nausea, fatigue and heat added up to me not having a very nice time.  It would have been a fun outing and I would have done something good for somebody whose family has been good to mine.  Fortunately I know they understand.

I did get wonderful news after my most recent chemo:  my CA125 is 12.9, which is completely normal!  I can’t tell you how great that is.  Several people said I made their day by letting them know.  It means a lot to me that they care so much.  Being sick and feeling puny is easier to take knowing that the numbers are going in the right direction.  I feel so sorry for the women with whom I’m acquainted (via the FB support group) who are fighting and feeling awful and whose numbers are going up and whose cancer is continuing to spread.  I admire their tenacity and strength and I grieve when one of them says she wants to give up or when she says she is meeting her hospice nurse for the first time.  These women are heroes to me.  I want to continue to be strong and positive even when the days aren’t going the way I’d like them to.  I’m still here, still alive and going in the right direction.  I’ll keep telling myself that.