What Would Jackie Do?

This is going to be a long one and not easy to write.  I am losing my mother to cancer.  She was diagnosed with stage IV lung cancer in early November and her battle is reaching its end.  To say I am shattered is an understatement.  She has never smoked and she beat cancer 35 years ago, having had kidney cancer while pregnant with me and not knowing it.  This post is about a woman has always been a hero to me.  This my eulogy for her.

My mom is an amazing woman.  She has spent her life working hard and loving those around her.  She grew up in a very rural setting and went away to college in an era when women's job choices were still mainly limited to nurse, teacher, or secretary.  My mom majored in Secretarial Sciences and went to work for IBM.  She was a secretary, sold Selectric typewriters to schools, and ended up teaching employees how to work as a team.  She said jobs were created for her on more than one occasion.  She also told me that she was career-focused and never planned to get married or have kids.  People who know her can't even fathom my mom not being a mom.  Luckily for me, she fell in love with a handsome man and had me.

This is the part where the first cancer showed up.  Just after I was born, the doctors discovered a tumor in one of my mom's kidneys.  She went through an emergency c-section, a biopsy, kidney removal, and radiation treatments.  And she beat it.  For 35 years she was cancer-free.  Neither a drinker, nor a smoker, my mom's only real vices are cut-glass dishes and reading. She is a giver and a nurturer.

Growing up I knew I had a great mom.  But it was my friends and hers that made it really obvious.  My mom is Donna Reed, June Cleaver, Martha Stewart (but without the nasty attitude).  My friends loved coming over because my mom always had stuff on hand to make chocolate chip cookies, and was willing to throw a batch together on a whim.  I even had someone tell me back in the day of those "WWJD" bracelets that for her it meant "What Would Jackie Do?"  I remember one friend awed by the fact that my mom would make rolls from scratch ("You can DO that?!").  If I left my jacket at home my mom would drive it to my school.  She taught me to sew and love it.  A friend described her recently as "a woman from a different time" and I think it fits and I am grateful for it.  I love that my mom taught me cooking and sewing, skills not often seen in my generation.

Since becoming a mom myself I have often wondered how my mom did everything that she did.  She worked full time until I was 12, cooked dinner almost every night, kept the house spotless, and spent time with me.  I asked her the other day how she did it all and, cancer having taken her voice away, she responded with a Bewitched nose wiggle.  She set the Mom Bar really high, even with points detracted for the "compromise haircut", aka mullet, that she talked me into in 3rd grade.  I often feel that it is hovering high over my head without hope of reaching it.  My house is a disaster, I cook maybe twice a week, and I'm so tired after working all day that I don't feel like hanging out with my kids all the time.  And now she is an awesome grandmother--baking cookies with my boys and telling them stories of her childhood.  Watching my boys tell her a final goodbye was the hardest thing I've ever done.

That's just what she has done for our family.  You also need to know how she has treated others, making them part of our family, too.  Whether a teenager in need of looking after or a grown woman needing support, my mom has been there.  She guides with patience and love, gives advice without coercion,  She has always guided gently and given encouragement to follow my heart to where I am happy--no judgement.  Those of us who have been under her wing are truly blessed.  I know a lot of people who will feel her absence.

So as I sit by her bedside, holding her hand, I think of her legacy.  She has left an imprint on many hearts and as long as people spread the love she gave, then her memory carries on.  I have promised to be gentler on myself and focus on the love I give my children instead of how cluttered my living room is.  I may not be able to do everything the way she did but if I share the love she taught me then I know she will be remembered.  Big Red, wise beyond his years, said it best this morning as I walked him to the bus stop--"When Gram goes to Heaven she will be an angel watching over us."  By her side I can feel the presence of God and my grandfather, her dad, who died of cancer when my mom was my age, and I know that Big Red is right.  She taught me to be strong, independent, and resilient.  Now I will use those qualities to carry on without her.  Without frantic calls about whether my ground beef is safe to use.  Without words of encouragement when I feel broken.  Now it is my turn to do as she taught me.  I love you, Mom.

Elephant Backpack

I posted awhile back about fatigue.  Well, that was fibro fatigue.  This week Ihave been feeling the full effect of Chronic Fatigue Syndrome and it blows my regular fatigue out of the water.  When my rheumy mentioned that the 2 issues go hand in hand I wondered how I would know the difference; now I know.  CFS has a different feel to it, the fatigue has a different quality about it.  This has been a new experience  for me and so the learning curve affects both my husband and myself. 

I asked a chronic pain friend for help explaining to Obi-John what I've been feeling.  She immediately replied with an analogy using Han Solo and carbonite.  This works well for the "unrefreshing sleep" aspect of CFS because were I to be encased in carbonite for a week I would still feel sleepy when rescued.  I'm used to feeling tired physically and maybe sleepy in the evening.  I'm even used to struggling to wake up many mornings.  But the sensation of being so sleepy that driving to work and making it through a half day there is unusual. 

I've decided that the best way to describe this past week is that it's been like wearing an elephant on my back.  A ninja elephant.  It attacked suddenly and without warning on the way to work one morning.  I felt pretty good when I got in the car with my coffee and my tunes.  My drive is about 30 minutes and by the time I got to work I could barely stand.  I almost fell getting out of my van.  I trudged into work and got winded from the effort.  I did as much desk work as I could.  I had to support myself on the counters to walk around when I came out of the office.  I moved like a turtle through molasses.  Fortunately, I only had to work until 2 that day.  I went home, crawled into my bed, and fell asleep. 

That was the worst day by far, but my friend, the ninja elephant, has been riding piggyback since then.  I've napped a couple more days and spent as much time resting as possible.  I feel like I'm letting my family down but they've been pretty understanding so far.  My patience is thin and my temper is quick.  My muscles are tied into achy knots and my joints throb periodically.  Going to bed early doesn't seem to help.  I went and had a 90-minute massage this afternoon and the masseuse said my muscles are pretty high on the ridiculous scale.  She did a lot of good, though, I feel.  Maybe the elephant went on a diet because he seems a little lighter than before.

Like I said before, this experience has been a new one for me.  I've been researching more about CFS and I have learned some interesting things.  Muscle pain and weakness, joint aches, and food sensitivities have all shown to be connected to the syndrome.  I have mixed feelings about that.  On one hand, I feel good to know that my other symptoms are part of the same issue and not a bunch of other, separate issues.  Phew!  But that means that CFS is a really nasty customer.  Like wearing an elephant backpack isn't bad enough. 

I haven't found any magical beans or other amazing cures so I suppose I have to ride this out until my pachyderm friend is ready to leave.  I'm hoping that he does.  I am holding out hope that this is not my new normal.  If it is I will find a way to cope, after tears, anger, and the other kaleidoscope of emotions that come with chronic issues.  For now, I'm watching Big Red and Monkey practice their jiu jitsu.  Gentle hugs from a very sleepy fellow FibroMIGHT.