Tuesday, March 26, 2013

Evening Snippets

Tonight home from work, a letter waits for me on the kitchen island. Return address Seattle. Oh! it must be from Aunt Glor. I love, love, love Aunt Glor. She makes me laugh, she believes in me. But the letter is not from her, but from cousin Leslie. Aunt Glor died on February 22, 2013. She shared a birthday with my Dad. This dying business has got to stop. Enough already.

Later this evening in our room folding laundry. Melanoma Man, a bit discouraged by the cascade of medical bills raining down upon us: " I can't remember what I came in here for, but I saw the laundry, felt guilty for doing nothing and my wife doing everything, and I started folding."

Me: "you are doing the most important thing of all, spending time with your sons, talking about baseball , legos, books, whatever they want to talk about."

Melanoma Man: "Yeah, but that's just being a Dad."

Me: "Oh, so did your Dad do that with you?

Melanoma Man: "No."

Laundry Thief: "My point exactly and that's why I love you."

Melanoma Man: "love you too, don't ever forget it."

Monday, March 25, 2013

Spring Break

This week featured 2 trips to the Cancer Center for Melanoma Man. The first on Wednesday, by plane, with apologies for spending the money. No apology needed. I worry about the 9 hour roundtrip by car in one day. There's the professional warrior and the professional worrier. I am the latter. He forgot to bring his investigational drug home with him on Wednesday. The study protocol wouldn't allow them to ship it, even at our expense. So back to Tampa Saturday by car. I'm not totally heartless, I did offer to go. He is totally independent and doesn't need no wife driving to Tampa for him. So off he went.

I've developed a new diagnosis for the DSM V ( Diagnostic and Statistical Manual of Mental Disorders).  Obsessive Compulsive Card Making Disorder. The good news is that if things go as planned I'll make some $ off the cards. If things don't go as planned, you lucky readers will have happy happy birthdays and reasons to smile unexpectedly when you go to the mailbox.

Side effects. I'm experiencing a good one from dropping out of graduate school. I wanted to believe, believe, believe, that I could do it all, keep these plates spinning in the air. There would be a sacrifice and I thought I saw it out of the corner of my eye, just barely. Nothing blantant, not overt. Only I could see it. I was losing my oldest son. I became invisible to him. The unavailable Mom, the don't bother Mom, the mom is too busy, the "you are 12-do it yourself" Mom. 

It's been 4 or 5 weeks since I dropped out and just this week he started talking to me again. "Mom, let me tell you about the plot of the game I'm playing," or "Mom, you won't believe what happened on Clone Wars," or "Mom, can I summarize the book I just read for you?" His summaries are exceedingly long and exceedingly boring, but they are the way in to his heart. His sharing them with me, a sign that all is not lost. And last night he said: "I wish you didn't have to go to work on Monday." 

I am reminded again that I am just where I am supposed to be.

Sunday, March 17, 2013

Little House on the Prairie

I read the whole series of books to my oldest son, I, when he was about nine years old. I thought the pace might be too slow or boring, but it wasn't. He was fascinated to hear how kids lived in another era. Some days I wish I could go back in time..

We celebrate this week, tentatively. Word is the tumors are still shrinking. Melanoma Man calls from the road on Wednesday, "I've got PVCs, but it could be nothing. I'm supposed to get a rhythm strip done when I get back home." He tries to joke with me about PVCs being polyvinyl chloride, rather than premature ventricular contractions. But I'm not biting. He's in a toxicity study, pre-clinical trial to see if XL888 should even go to clinical trials.

I know the PVCs are not anxiety or "nothing" as he would have me think because they do an EKG at every visit and this is the first time the PVCs have appeared.

Thursday morning I hear him on the phone with the call center of the university medical center for which I work. He's leaving a message for his primary care doc. He tells the person on the other end: "I had a routine EKG at my other doctor's office yesterday. I'm having PVCs. I need to get a routine rhythm strip done. Is that something Dr. A can do?"

Off the phone I tell him that he needs NOT use words like ROUTINE when he's talking about an appointment with his ONCOLOGIST, an investigational drug, and an abnormal EKG. "Look the call center folks answer the phone, schedule appointments, that's it. They can't triage. So they are going on clues you give them and if you keep using the word ROUTINE, no one is going to call you back!"

Sure enough, no call back Thursday, no call back Friday. I could call on his behalf but I don't. It's not worth the fight. That would just be me, stealing something else from him. First the laundry, now this. I can't even ask him if anyone called back. It makes me too mad. I getting weary of saving his life.

Friday night the youngest, W, is in a full bratty "I don't like the dinner" meltdown, clearly not reading the signs I put up in the kitchen that say "YOU get what you get and Don't throw a fit." He is throwing it, the fit, that is. The words in my head, which would be like gasoline on this fire, are getting dangerously close to flying out of my mouth, so I put on my shoes and head for the car, drive to a nearby playground parking lot and call a friend. I tell her all the horrible words that I want to say to youngest son.

I remember my mother running away when I was a child. Always drunk, spewing her vitriolic words at us on her way out the door, often a special event like Mother's Day, sometimes in a fur coat. Hmm, maybe I am an ok Mom after all? The bar is set kind of low.

Back home later W tries to make it up to me with a cursory "I'm sorry." I'm not sure where it came from when I said "It hurts my heart when you act like that while your Dad struggles to breathe and make dinner at the same time. He's not going to tell you how hard it is for him or how sick he feels from his diseases and his medication," The tears came streaming down, W's and mine.

Sunday morning Melanoma Man says "Do you know Dr. A.'s fax number?" That's how I officially find out he never heard back after leaving his "routine" message with the call center. His oncologist wants him to drive 4.5 hours to the cancer center Monday if he isn't able to get the rhythm strip done locally at Dr. A's office. I'm annoyed because I was right about the call center. I call in a favor from my Department Chair. Ten minutes later Melanoma Man's phone rings. It's Dr. A. He will see him Monday at 11. No 4.5 hour drive! Here I am again, saving his life.

These are the days when I wish we were out working the fields and one day he just got tired and sat in the rocker. And the neighbors noticed that he wasn't working the field with me anymore. They came and helped me with the harvest. And we weren't all so monitored and measured and aware every moment of what we are losing.

Tuesday, March 12, 2013

Beautiful Day

I''ve always meant to try out writing a gratitude list at the end of each day. It was all the rage with Oprah. I never got the hang of it. But I'm going to give it another shot. Here goes.

Gratitude List
1) 73 degree walk on the beach with K on Sunday.
2) Co-workers who take such great care of me & get my sense of humor. Melanoma Man never has. I don't know how you can be married to someone who doesn't get your sense of humor. I'm proof it can be done.
3) The audio book When You Are Engulfed in Flames by David Sedaris on loan to me from VT.
4) My 45 minute commute to work, which gives me time to talk on the phone or listen to number 3.
5) Metallic blue nail polish, which is not on the dress code at work, so I think I shall wear it more often.
6) Daily Meditations from Henri Nouwen Society
7) The cardiologist who gave me his cell # today @ Melanoma man's appointment, after MM told me I talk too much when I started to ask a question.
8) The fact that MM's arryhthmia is not suggestive of a risk of MI. Just more tired, tired, tired, and shortness of breath-which is kind of normal now.
9) My new solution for MMs appointments, which I announced to him on the sofa tonight. I'm not going to anymore appointments. He'll get a list of questions I need answers to and if he doesn't come back with answers he'll sleep on the patio.

Friday, March 8, 2013

Is that what happened?

I shared my blog with my brother a few days ago. It was a risk for certain. No two children see their parents or their family the same way. He wondered:  "Was Mom really that bad?"  The answer is Yes and No. She wasn't the same mom to each of her children. She was more than just a drunk. She was educated, smart, funny, creative, talented,  insecure, anxious, depressed, and drunk. And she may have been in the wrong line of work, mothering, like a lot of women in the 1950s and 60's who followed the plan: college/marriage/motherhood.

 Ultimately she may have felt herself a fraud, because not one of the four of us came from her. We all came from Catholic Charities. They tried to make us match, using pictures of the older sibling to match up the next. But we don't match. My brother J is probably the closest match because our eyes crinkle up in the same way when we smile. We're just four years apart so we shared after school basketball in the driveway and re-enacting the Civil War in the yard.

Mom cut out a newspaper article for me to read when I was in high school. It linked workaholic fathers with adopted children, speculating that the fathers worked so hard to avoid the children. It was years before I realized it was her he was hiding from, not me. I was the apple of his eye.

We two girls were a threat, more than the boys because we might, we just might bear our own children. And we did. She really couldn't forgive that. She wouldn't come see my youngest when he was born, but insisted that I fly with 4 month old and 2 1/2 year old to see her. I usually complied just to avoid the conflict. She held him once: "He's beautiful. I hope you aren't having anymore."

I rescued her from numerous medical dilemmas, all of her own making: vitamin B deficiency, rhabdomyolysis, a brain aneurysm, mini-strokes, a heart attack. Ultimately Wernicke-Korsakoff syndrome set in and landed her in the finest nursing home in her town, which closely resembles the institution in One Flew Over the Cuckoo's Nest. And the daughter who never visits, that's me. It wasn't who I meant to be. But it is who I am.

Thursday, March 7, 2013

Sweet Things

One of my Mama's called me Wednesday, asking whether I might be able to trim her daughter's fingernails for her at her one year check up in 2 weeks. Well two weeks seems like a long time to me to go on with too long fingernails. "As a matter of fact I am running a special on manicures tomorrow. Can you come in tomorrow?" Yes, yes she could. I wondered meanwhile, who has been trimming this baby's fingernails for the last year? They arrived this afternoon all bundled up in winter gear. We wear our winter gear here in Florida if it's in the 60's. She handed me the unopened package of brand new Walgreen's baby nail clippers. As it turned out she's been using an emory board for the last year. That must take a long time I thought. Baby sat in my lap as docile as can be while I trimmed her fingernails. "Toenails too please," said Mama. These two I've fretted about and worried about since even before baby was born. Today they made my day.