AbandonMENt

Today is Father’s Day. It is the first Father’s Day we are spending without WineGuy here, and it’s not a great day. I’m feeling abandoned by the men in my life because the best of them are gone.

WineGuy left this earthly plane six weeks ago. I guess I’m still numb:  most days are pretty good interspersed with unpredictable sad moments. Two days ago, I took Moose and Wild Thing to see Disney/Pixar’s “Inside Out” What should have been a fun little animated movie left me missing WineGuy very much and made me endlessly sad.

My father passed away almost eight years ago. I have come to terms with his death, but the endless photos and Facebook tributes to fathers make me miss him a lot today. His brother, my favorite uncle, who was partially responsible for introducing me to WineGuy has been gone eighteen years. HIs grandchildren’s tributes to their father, my cousin, widen the hole in my heart today.

Finally, Moose left for summer camp today. I got up before the roosters to drive him to the airport. He flew by himself through Atlanta to Philadelphia, and I am endlessly proud of him. But, he will be missing from today’s maudlin little celebration of Wizard’s 19th birthday. Even with Wizard home for the day, I’m feeling like parts of me are missing. Myriad “I’m thinking of you today” messages from friends far and wide are not helping either.

This is all new. It’s certainly not normal. I wonder when that will be.

30 Days

A few days ago, Sheryl Sandberg, Facebook’s Chief Operating Officer, wrote a lengthy post about the end of her initial mourning period, called “shloshim”. At least six different people sent it to me, thinking it would bring me some comfort or perspective. All it did was piss me off:  she’s a better writer than I am; she has a *job* to which she can return; she has more money than Croesus and doesn’t have to worry about financial stresses; and, she’s a whiner. But, what’s clear to me is that she’s pretty ignorant about Judaism, our seemingly common bond. Shloshim, is not “the completion of religious mourning for a spouse.” Shloshim is the next step in the mourning process for the next of kin, a first-degree relative like a spouse, a parent, or a sibling. It is a secondary mourning period in which certain social strictures are removed; shloshim is a time of “gentle reintegration into society,” according to Isaac Balbin.

Rainbows

For the longest time I thought that every rainbow was a promise from G-d not to destroy the world again. Since my dad died 8 years ago, I’ve tried to see rainbows as signs that things were looking up or were going to get better. Since Dad died, hearing “Somewhere Over The Rainbow” makes me think of him and cry. 

Today, I was a backseat passenger in our sedan as Wild a Thing drove us to dinner. I saw the entire arc of a big rainbow, and my heart nearly broke. The song lyrics came to mind, as they always do, and I thought of the two men I loved the most and lost. I kept my face turned toward the window so the boys wouldn’t see my tears.

Rainbows aren’t magical right now. They are iridescent frowns reminding me of rainbows traversed with WineGuy and never to be reminisced about again with him. For now, I have to agree with Karen Carpenter, “rainy days and Mondays always get me down”.

Circle The Wagons

Just a quick post before bed. Today was not a good day for any of us. Wild Thing came to me first thing, carrying WineGuy’s lab coat which has languished in the trunk of his car for 18 months. In the lab coat I found WG’s hospital badge, some patient notes, and the stethoscope I bought him right after we moved to The Zone. This find upset Wild Thing and me; every song we heard today made us sad. 

I spent the day driving back and forth across the area because Wizard had an orthodontist appt and needed to go back to university for an afternoon class. Wizard was desperate for a few minutes at home and begged me to come back and bring him home for the weekend. Thank goodness his college is only 25 minutes away. 

Wild Thing, Moose and I went to see “Spy” tonight. The action, dialogue, jokes, and exotic locales were just what we needed to take our minds off of everything. 

I’m tired from driving over 120 miles today, but I’m content with all my boys under one roof. We will go to Sabbath services at our synagogue tomorrow and say the Mourner’s Kaddish for WineGuy. We’ve circled our wagons and are looking out for each other this weekend. Perhaps this is the beginning of “the new normal”.

Clueless in College

WineGuy and I started last week with such high hopes. Wizard was finishing his summer session at community college and getting ready to start at the local public university. Wizard reported that his summer classes were going well and that he expected to receive As or Bs in his three classes.

Tuesday afternoon, WG and I drove up to the community college and helped Wizard pack up all his stuff. “Helped pack” meant WG randomly threw stuff in plastic bins while I carefully folded the laundry that Wizard thoughtfully washed some days prior. Mamafoldit worked for 40 minutes folding and packing every polo shirt, every t-shirt, every pair of shorts, pants, socks, and underwear in to Wizard’s suitcase. Wizard swept up some stuff and threw a few things in his backpack. By G-d’s grace, we finished and were checked out in just over an hour, and returned home 40 minutes later.

Winners and The Loser

My longtime friend IRL, Aim, has started blogging about *her* life with three little boys. She calls herself “The Outnumbered Mother,” and you should leave The Zone right now and go read her blog. She is hysterically funny. Moreover, even with a baby and two small children, she is blogging more regularly than I, and she shames me into getting off my duff to write more often. Thanks for kicking my ass, Aim.

We have had more naches in The Zone this week than we’ve had in a long time! First of all, Moose’s beginning middle school band had its final concert of the year. The 6th graders played a 30-minute concert consisting of 6 songs. The band performed four of them really well, especially “Guantanamera” (a song close to my Cuban-rooted heart) and the theme from “Star Wars”. I was really impressed with how well the children kept time, watched the conductor’s stick, and played the music together as opposed to a group of individuals. Afterwards, WineGuy and I treated Moose and Wild Thing to a sushi dinner to celebrate. Wizard wasn’t there because Wizard wasn’t there.

Disease Diary (Part 6)

What we originally anticipated to be a 5K has now turned into a 100-mile ultramarathon. When last we spoke, we were waiting for the results of the latest PET scans. They were actually good: the tumors were significantly decreased and their cancerous activity decreased as well — almost a remission but not quite.

Continuing on our winding path, WineGuy’s surgeon removed the surgical drain he’d implanted in WG’s leg months before to aid in the drainage of dead tumor and other yuck from the last surgical incision. The drain had been in for months and left a pretty large wound in the top of WG’s leg. As I changed the dressing daily, I noticed the drainage changed color from clear to black and foul-smelling. We rushed right into the surgeon, who sent us on to the infectious disease doctor and for a wound-care consult. The ID doctor cultured the wound and found all kinds of nasty bacteria, so she sent WG for IV antibiotics. Since the beginning of April 2014, WG has been going to the local outpatient infusion center for daily IV antibiotics. The drugs seem to be working because the latest cultures were clean.

WG’s initial wound-care consultation was a harrowing experience. I sat in the room with him while the team probed the open wound in his leg. WG howled in pain and gritted his teeth through all the poking and prodding. After 10 days of daily wound-care, including visits from a dorky home health nurse, the new wound-care doctor changed the schedule to 3 times a week. Wound-care reports that there is active healing going on, and things look good.

The point of my tangent on wound care is that the oncologists will not resume chemotherapy while WG has an open wound. So, we’re in a holding pattern again … sort of. About 2 weeks ago, WG noticed significantly decreased vision in both eyes. I got very worried and rushed him in to see the ophthalmologist. WG has cataracts in both eyes. It is likely that the chemotherapy and/or the radiation accelerated the growth of cataracts. What to do?

That brings me to this morning. I am presently sitting in an ambulatory surgery center while WG has his left cataract removed. You can’t have cataract surgery while undergoing chemotherapy. So, while he’s on a forced hiatus from the chemo cocktail, WG will have two cataract surgeries over the next two weeks, in addition to daily IV antibiotics and 3x/week wound care. And, I am still the only driver in the house. Boy, am I tired.

In the meantime, the oncologist wanted us to get approval to start another experimental chemotherapy drug, Imbruvica (ibrutinib), made by Johnson & Johnson. In typical fashion, Florida Blue health insurance denied coverage, stating that WG does not fall within specified parameters. So, we applied to J&J’s Foundation to supply the drug via compassionate use, and the Foundation approved the application! We just received the first bottle of these oral chemo pills from J&J’s affiliated online pharmacy.

As soon as WG’s leg is healed, he can start back on chemotherapy, both orally and intravenously. The oncologists at Mass General have requested WG go through another two rounds of the latest IV chemo cocktail before they will accept him for a bone marrow transplant.

Time-wise, that will keep us in The Zone through May 2014. We’ll be home for me to take Moose to Atlanta this weekend to audition for Jeopardy!; to celebrate Wild Thing’s 15th birthday and the acquisition of his learner’s permit; to hopefully attend Wizard’s graduation from high school.

I’ve learned to plan what I can and roll with the rest of it.