A different 9/11 remembrance

While the rest of the country is reflecting on this day 11 years ago my thoughts have been on my sister. Today would have been her 52nd birthday had we not lost her two months ago.  As unreal as it seems that 11 years have gone by since we were brought to our knees by an act of cowardice by terrorists, it is equally unreal that yesterday marked the 2 month anniversary of when this family was brought to its knees.   I talk about Debbie in my blog of 7/21 when the shock was still fresh.   I had to recount to yet another medical provider the facts of her illness(es) and death yesterday.  I’m beginning to think my expectations of the medical community are unreasonable.  While I know they share information regarding my treatment between them, not one doctor has included the fact that my only sibling died unexpectedly in their reports.  Yet, they all want to be kept abreast of changes in family medical history.  Annoying is an understatement.

Today is exactly the kind of September day it was 11 years ago on Debbie’s 41st birthday when America changed forever. Bright sun, impossibly blue skies, cool air.  A perfect day for remembrance.  In a bit some of her family and friends will gather. We’ll visit the cemetery and then have dinner together and celebrate.  Not everyone can make it but those of us that can will raise a glass and remember.

Happy Together

Last night we were at a waterfront concert seeing the Happy Together Tour with the Buckinghams, Grass Roots, Gary Puckett,  Mickey Dolenz of the Monkees and Flo and Eddie of the Turtles.  Aside from my daughter I was probably the youngest person there!  When the performers would ask “What were  you doing when this song was a hit (in 1968, 1969! ?)” while most in the audience were in the  service or high school/college I was in the first grade.  I thought it was pretty funny that even with my (new!) gray hair I was one of the babies in the crowd.   We almost missed the show.  Youngest daughter (Thing 3) was in charge of the tickets. She was the one that first heard of it and talked her father out of his credit card to buy them. They were electronically sent to her email account.  All summer we were all thinking the concert was Sat, the 28th.  She thought it was at 5:30, I thought 7:30.  I asked several times this week for her to check. She finally did. Last night at 6:40.  We live an hour from the venue. Her father was out mowing the lawn and was very hot and sweaty. I had been doing housework. In 10 minutes we had both showered and changed while she printed off the tickets and away we went.  I said we would miss most of the show, not be able to park, etc. etc., but we wanted to see at least some of it for the 150.00 we spent on tickets.  We got there at 7:50 and had only missed some of the first group (The Buckinghams) and miracle of miracles there was a (free!) parking space right at the gate!!  We had front row seats.  The bands were awesome. Was Gary Puckett always so dramatic?  At the end they all performed together.  It was a great night out. My daughter snagged a guitar pick from the Grass Roots guitarist and she and my husband both got Mickey Dolenz autographs.   Since we missed dinner, on the way home we stopped off for a plate of eggs and finally got to bed well after midnight.

Since I’m having radiation daily, not to mention the emotional upheaval of the last few weeks, I’ve been very tired. I planned on a quiet, restful Saturday so I would be fresh for the concert and a nice dinner out.  In order for that to happen I didn’t stop all day Friday. I cleaned the house from top to bottom, did all the laundry (including hanging it out), the daily one hour round trip for treatment, did  groceries, and spent several hours at my desk.  Just as I was about to take a hot bath and relax, we were flying down the highway to a concert.  I’m glad I ignored my knee jerk reaction to stay home and just let the two of them go.  All my life I’ve been a planner (and bit of control freak) and I’m sure I’ve missed out on a lot of fun because I hadn’t planned it ahead. I’m the least spontaneous person I know.   Maybe cancer has given me a gift. After all, I didn’t plan on having cancer or spending the better part of a year fighting it, but there it is. It hasn’t stopped me from living my life. I’ve just made room for it (for now).  I didn’t plan on losing my sister in such an unexpected and heartbreaking way, but that happened too and we are dealing with it and going on because we have no choice.  One thing she always did was make time for fun and family, even if it meant letting things go that she was just too tired to do like housework or staying on top of other responsibilities. It drove me crazy at times but I’m so glad now that she knew what was important. Certainly not planning out every minute of your day/week.

Thank you, Debbie, for that. And…well.. Fuck you, Cancer.  (no one really thought I would thank cancer, did  you?)

It was always Debbie and Susie

Growing up we were Debbie and Susie. Two sisters, one blond and one brunette, two years apart. Like all sisters we played together, fought bitterly, made up, giggled, plotted, fought some more and managed to reach adulthood without killing each other. I was the master at pushing her buttons until her son came along and installed new ones.  He came along exactly 6 weeks after my first daughter so we experienced first time motherhood together.  As we raised our families the arguments were fewer and further between but we could still piss each other off like no one else could.   We both recently started watching Dark Shadows on Netflix. She was many episodes ahead of me and wanted me to catch up. Watching reminds me of when the show aired originally.  I was 3 or 4 and she was just starting  school. I would stand in the window and watch for her bus.  When “my Debbie!” appeared, I knew it was time for Dark Shadows. We watched together every afternoon.   In the last few years Debbie has gotten to experience being a grandmother to 3 adorable little boys.  It made me laugh when one of them would refer to her as My Debbie.

Debbie was diagnosed with Lupus when she was in her 20s.  She was never exactly healthy, but never really had any of the bad flare ups you read about.  She suffered from terrible migraines, but so did my mother and myself. She had a lot of rheumatoid symptoms and was on pain medication most of the time. But during all that she raised her son, returned to school in her 40s, got her teaching degree after subbing for many years and was excited to land a job teaching 7th graders.  I thought she was insane for picking that age group. She loved every minute of it.

When I got my cancer diagnosis she took it harder than any of us.  She cried so much that at one point I told her to “dry up” or I wouldn’t talk to her.  She didn’t cry in front of me again, but I’m sure she still shed plenty of tears.  The day of my surgery she received a call from her doctor who had been going over some recent lab work.  At that point she had been experiencing horrible infections for months and antibiotics were not working. He suspected CVID (common variable immune deficiency). None of us had heard of it but she met with a specialist who agreed and wanted to start her on infusions of intravenous immune globulin (IVIG) as soon as the following week.  A little Internet research prompted her to ask for a second opinion as this treatment would be administered once a month for the rest of her life.  The 2nd doctor would not agree with the diagnosis until he ran his own tests.  Each time it would take weeks to receive the results, at which time he would decide one more test was necessary, then one more.   By the time the diagnosis was confirmed, treatments were agreed upon and the insurance finally approved them (but only for 3 months) it was 7 months since the original diagnosis. She had two treatments and was feeling better than she had in a long time. Then, one week after the 2nd treatment she passed away in her sleep. It was July 10.

My last entry on this blog was July 9. I was outraged that my radiation had been cancelled and I was going to have to tack one more day onto the end of my treatment.  She read the blog and called me to commiserate.  We spoke for over an hour. She had had a relaxing day reading in the sun. When I saw her over the weekend I had loaned her a stack of books and her plan was to alternate one book for pleasure with one for her curriculum planning.   18 hours later I was standing over her bed where she looked like she was sleeping peacefully, curled up on her side like she had slept every day of her life.  It’s been over 10 days and it still doesn’t seem real.

I returned to treatment Monday, now a full week behind schedule.  I commented how f’ed up it is that cancer treatments feels like a return to “normal”. She would have appreciated that, along with the black “fuck cancer” bracelet I have taken to wearing every day.

I miss my Debbie.