Category Archives: Fighting Cancer

Peace

The Thriller is at peace. Me, not so much yet, but I know I will find some farther down the line.

On this, our wedding anniversary, I reflect back on his life: one well-lived and full of great adventures. I’m sure at the end he regretted nothing other than the fact that he couldn’t stay with us. On my last post in the “Fighting Cancer” category, I will write about his last day while it’s still fresh in my mind, so I never forget.

The night before he passed, he kept his children up for hours (they had forced me upstairs to bed at 10 p.m., as I hadn’t slept much over the previous four nights), wanting to walk around the house, suspended on the arms of his son and son-in-law. They all took turns walking him around in his restless, somewhat agitated state. This was his active period; according to my research and what I was told by the Hospice staff, cancer patients in their final hours have periods of activity or restlessness. They often cry out or moan or talk in their sleep. They see and talk about people who are long dead. With other patients, it’s a time of physical regeneration, albeit temporary. Such was the case with the Thriller.

He refused to lie down to nap on that last full day and night, and it was wearing us all out, because he couldn’t be left alone for a single minute. We feared for his safety, as he wanted to stand up on his own and try to walk, but as soon as he’d take a step, he would surely lose his balance. At this point, he was almost completely non-verbal, with just the occasional “yeah” or head nod.

Anyway, about 5:00 a.m. on the 23rd, I came downstairs and told the kids to go get some sleep. Oldest daughter Becky stayed, and my younger son came over. They helped throughout the morning, and then at 11 a.m., I told them to go on home, as I had convinced Michael to lie down for a nap, finally.

He never left his bed again.

As Friday gave way to Saturday, we noticed his breathing becoming more labored, so I increased his morphine, and it helped. Then the apnea began, and throughout the day, we counted up to 20 seconds going by between breaths. This continued throughout the afternoon. We all sat by his bedside, taking turns holding his hands. We told stories, laughed together at funny memories from the kids’ childhoods, kissed him and stroked his hair. I’m convinced he could hear us and feel us.

In the early evening, his breathing changed somewhat, and he began breathing in through his mouth and out through his nose, at a faster rate. We took more time to talk to him and tell him how much we loved him. When his physical body control gave way and there were several accidents, we teamed up to clean and change his clothing and padding, while talking to him and doing all we could to spare his modesty. We put on our gloves, and while the girls assembled the waste bags and replacement garments, Josh lifted and moved his father (saying, “Sorry if that’s uncomfortable, Dad; I’m just going to lift you up…”) so I could clean him. No one minded. It was our privilege.

I suppose I could have/should have called Hospice in at that point, but as wonderful as they are, I didn’t want them there. I wanted it to just be family. And since he didn’t appear to be in any distress, I was fine with it staying that way for a while.

Just before 11 p.m., his children and I saw Michael open his eyes wide and look right at me. I knelt down beside his bed and said, “Well, look who’s awake.” It was then that his eyes closed again, and he exhaled softly. We waited for him to start breathing again, but he never inhaled. It was over.

There was no wailing or rage or histrionics. It was perfect, still silence. After a few minutes, we called Mavis and the boys, and took turns sitting next to Michael, holding his hand and kissing him goodbye. We held each other. We talked and cried.

After a couple of hours, I called Hospice. A nurse arrived and formally examined him (although we know he died at 10:58 p.m. on the 23rd, his official time of death was when the nurse examined him at 1:35 a.m. on Christmas Eve; hence, the 24th will appear on all official documents, and on his grave marker). She then contacted the funeral home. By the time the two men came and placed him on the gurney with a beautiful quilt covering him, it was 3 a.m. We gave him a final kiss goodbye, one by one.

And now I begin another journey: my future. I’m sure the good times will return, but it’ll be a different kind of enjoyment. I’m as ready as I will ever be for it. Next post, I’ll be back to my normal drivel about entertainment, daily life frustrations, school, grandchildren, grammar, and various and sundry things that make me alternately happy and furious.

Happy new year, fiends. Much love to you all.

#teamthriller

New normal

Hello everyone, and Merry Christmas, Happy Hanukkah and Blessed Kwanzaa to all. And for those who don’t celebrate any holiday, I hope it’s a beautiful Thursday wherever you are.

I will tell you today about our new normal, which started basically over the last five days. The Thriller is on some heavy duty medications, which, combined with the disease progressing through his brain, have affected some major changes in his cognitive functions. He doesn’t speak in complete sentences anymore, and what he does say often does not make sense. He struggles to finish a thought.

He spends most of his days alternating between snoozing and sitting up in his bed or office chair, attempting to make sense of the thoughts that are obviously crowding inside his head, but for which there seems to be no descriptive words. He’s lost interest in his video games, the newspaper, and in most TV. Leaving the house stresses him out to no end. He fights against the rest the morphine wants to give him, which leads him down the dark path of sleep deprivation. He fixates on imagined problems that never existed, or real issues that have been solved already.

We can no longer leave him alone in the house for any length of time at all, as he took a pretty serious fall trying to maneuver around the bathroom the other day. Gave himself a super-sized egg on his temple, a gash on his forehead, and tore up the skin on his arms. The bathroom floor looked like a crime scene (you know how head wounds bleed). After that, no more sleeping upstairs with a call button; I’m back on the couch in the living room.

I desperately want him to be able to tell me what he’s thinking. I can see the frustration on his face and in his body language when he knows what he wants to say, but can’t articulate it. What comes out is jumbled fragments that I can’t fully understand. We’re both pretty much exhausted from the constant interrupted sleep, although he did nap for five straight hours last night — huzzah!

In spite of all this sad news…once in a while, Mavis and I will see the old Thriller coming through. A sly smile when he’s giving one of us a hard time, or eye contact and a grin when he “gets” an old private joke between the two of us. I believe the light is definitely still on to a degree. The other day, when I wanted to give him a diversion, I grabbed the TV widget and wondered out loud what channel his favorite news program was on, and I heard a whisper from behind me: “202.” ;-) The old man still has some of it.

At all other times, he’s in a place I can’t go, speaking a language I can’t learn. I guess I’m OK with that, as every time I tell him I love him, he responds in kind. He’s always up for a long hug, and rarely is anything but agreeable (except when it comes to lying down for a nap). We continue to look for the joy in each day, even though it’s a new kind of joy. A quieter one.

Much love,

#teamthriller

It’s all relative

Does this clock animate if you don’t click on it? Not sure, but if it does, I’m sure it’s annoying. You’re welcome. :-D

Hello to my 100 worldwide readers. (I hear I’m pretty big in Japan — two hits from there in the last month.) ;-)

It’s been a few days since I last wrote to you. During that time, the Thriller has had both good news and bad news, and a new radiation treatment.

The bad news was time-related, but as we all know, a) no one knows for sure, b) there have been thousands of inexplicable turnarounds in people’s cancer journeys, resulting in long life, and c) when it all shakes out, we’re all on the same road, right? So everyone — not just cancer patients — should live purposefully and celebrate every day. That’s what we’re doing here, and for the long haul. Time’s all relative, anyway.

Insomuch as I need to practice what I preach, I took some personal stock last week. The truth is that many people in my family (especially my sister, Mavis) have seen to it that Michael received excellent, loving care while I am at work. And that’s what began to gnaw at me, I think: others are caring for him while I’m at work — the place I’ve put above all else for the last two decades.

Time out. Strike that. Reverse it.

So I sat right down and wrote an email to my three bosses (two principals and superintendent) and said pretty much what I said above. I told them it was time now for me to spend more days at home, caring for what/who is most important. Granted, that puts my upcoming Christmas performances in a bit of jeopardy, but I’m happy to report that not only were my superiors completely supportive and understanding about everything, I think I’ve worked it out so I can take the time I need away, but still do the gigs.

So for the time being, there’ll be no more 4:30 alarms set. With the exception of my going in for some afternoon rehearsals, during which Mavis will cover for me, I am home until school resumes in January.

What does the Thriller think of all this? He was happy to hear it, but I’ll wager he will end this coming week pining for some solitude. :-D

Much love,

#teamthriller

A list

Nah, I don’t mean an “A-List,” although you’d all be on it. Rather, it’s just a small jumble that formulated in my rodentian brain as I ran across this mug while climbing into a rarely-opened cabinet for the huge stock pot I use for holiday mashed potatoes. (Tonight is Hamsgiving, huzzah!).

But first, a Thriller update:

Hospice has been wonderful to us. Gotta tell ya, I’m just not accustomed to hearing “Is there anything at all that you need?” so many times. Between them and our family and friends, it’s truly an embarrassment of riches, and I’ll never forget it or take it for granted.

M had a nasty case of cellulitis on his left calf and foot, and it was extremely painful. The doxycycline just wasn’t cutting it, so they brought in the heavy artillery and gave him a seven-day regimen of deep-muscle shots of rocephin (the stuff they use to treat meningitis, e.coli, staph and gonorrhea — the truly horrible infections). They arrived every day with a shot of Lidocaine first, which always means the son of a gun is going to hurt. But true to form, he never complained about it. Likely didn’t even wince. Go fig.

Next week, he leaves the house for the first time in over a month to go back to the Cleveland Clinic for another radiation treatment, designed to relieve some of the pressure in his chest, as well as zap the swollen lymph nodes around his collar bone. It should definitely make him feel better.

So, the list. As I mixed up some brownies at 6:30 a.m., I thought about stuff that I don’t want to allow to pass me by as I get older. Some of the items were silly, others more existential. Feel free to add to it; I’m always up for ideas!

  1. Buy it if you can. I’m not saying become a money wastrel, but afford yourself that scarf or tablet or book trilogy if it brings you joy. Saving funds for a rainy day is noble and advisable, sure, but don’t sit on every dime when letting go of a few will brighten the corner where you are. When I say life’s too short, I mean exactly that.
  2. Even when you’re thinking about someone you dislike, try to find something positive about him or her to add to the mix. Why? Because it exercises your empathy muscle: the one that atrophies the easiest. Since around, oh, 8 November 2016, I have been on a regular rage diet. First that, then the Thriller’s devastating diagnosis. What woke me up a bit was when, in a moment of anger, sadness, frustration, weakness and self-pity, I said something truly horrible about a person who had cruelly hurt a family member. It really shook me up, and I was privately ashamed. I needed to clear out those ugly cobwebs — to adopt a kinder, gentler perspective in the midst of these ongoing storms. This otherwise terrible person is someone’s child, and is loved and has love to give. That makes my criticism pretty weak tea.
  3. Defer. Do we always have to be #1? Many a relationship has soured on account of someone’s bedrock insistence on being right. I know you’ve seen it. I mean, fight for your passion, but practice deference when it’s not life or death. People aren’t lining up to hear my opinion; I will practice learning to be still. As fellow RtB citizen RD has said several times to me over our decades-long friendship: Sometimes you just lean and smile. :-)
  4. Pay the dang thing forward. If I’m writing this list in order of importance, this should be at the top. The Thriller and I have been the recipients of so much kindness, there is no way we could ever pay it back. Ever. So, forward we go. Twice I have donated to a worthy cause monetarily because I don’t yet have any spare time in my stupid schedule to do the real work. But it is definitely in the plans. People and causes need more than cash; they need hands and hearts, and when I’m through this insane school year (I love choir tour, but I confess I wish it wasn’t coming up at this particular time), it will be on my to-do list.  I’m good at cooking and baking and delivering things and writing copy and designing brochures and the like. I will use those talents, such as they are, to do good for others.
  5. Take care of your loved ones and yourself. I do know that I can’t “be there” for the Thriller if I’m a wreck myself. I’ve received this sage advice from many family and friends. No worries: I’m still taking time each night to read and monkey around a bit. I even went to the doctor for a checkup and to make appointments for the standard, old-lady tests that need to be done every so often. How about that, now?

You likely have many things you could add to this list. Please do! I will admit, however, I take particular exception to the silly, wrongheaded adage, “Don’t sweat the small stuff, because it’s all small stuff.” Oh, I beg to differ, pal. Life isn’t so inconsequential and meaningless that everything that happens to you that isn’t awesome is “small stuff.” So don’t write that one in your comment, unless you want to make me practice deference towards you. ;-)

Have I told you lately that I heart you? Well, darlings, I’m telling you now.

Much love,
#teamthriller

 

[title of post]

November is Lung Cancer Awareness Month. Give anything you can to research — help them find the answers.

I didn’t know what to call this entry today — maybe when I think of a title, I’ll put one in. Until then, I’ll just rip off an idea from Broadway:-)

I’ve waited since last Monday to write, because I wanted to see how the radiation treatment went. According to my impromptu interview this morning, he does feel some better from it. He was able to get some good quasi-coughs in, and one evening this week he even cranked his bed down flat to sleep! Granted, he said, he lay on his side, but it’s still a victory, as he hasn’t been able to lie flat for months.

Our local Hospice representatives came over on Thursday, and we had a nice talk. We learned a lot about what they offer, and liked what we heard. I don’t know why I didn’t know this, or how I didn’t just figure it out, but Hospice is an “either-or” venture; you don’t get to go to the hospital for anything unless you revoke Hospice care.  Of course, the Thriller, ever the inquisitive wisenheimer, asked, “If I can’t go to the hospital for anything, what if I fall and break my leg?” Legit question, I say. (The answer is that of course you can go to the hospital then, but Hospice will meet us there and temporarily revoke their coverage so the hospital can bill my insurance.)

He decided to go with Hospice mostly because of the alternative: very harsh chemotherapy, which would likely end up making him extremely sick, and probably land him back in the hospital — a place he never wants to see again. I was — and remain — completely behind him on his decision.

Some would say that Hospice means we’re giving up or in. It doesn’t. As we’ve discussed on many occasions, cancer is the obeyer of no rule. It doesn’t adhere to statistics if it doesn’t want to. How many cases have you heard about where the terminally ill patient goes to the doctor because he has no more symptoms, only to find that the cancer is inexplicably gone? No, we’re not giving up; we’re staying the course for the miracle. Why can’t it happen to the Thriller?

I must confess that I’m glad we’re done with the treatments and scans and appointments and waiting and driving and his discomfort with riding cooped up in a car and all the stress. I will miss Dr. Velcheti and his staff, though. They were very good to us, and the frustration over the fact that the drugs didn’t do their job was evident on the doctor’s face at our last visit. They’re good people up there, and if this demon ever visits your lungs, I recommend Velcheti without reservation.

So, we turn down a new path as of noon today, when the final signing of Hospice papers takes place. The Thriller wants to be home, and we all want him at home. No more needles and bruises; just hugs and kisses and partying.

I will also say at this point that the outpouring of love and expressions of encouragement through prayer, gifts, meals and text check-ins has been nothing short of overwhelming. I don’t think my boss would mind if I posted this photo from yesterday, when the staff at my school purchased t-shirts with the logo “No Trojan Fights Alone” in support of Michael and our friend Stoney, who is also fighting a cancer battle.

A hug at a rehearsal or in the hallway or teacher lounge, a note in my mailbox, an email or text, a card in the mail…all those expressions mean so much, and to everyone, I promise we will pay this forward.

Next on the menu for us? A trip to the casino for some fun, as soon as he’s feeling up to it. Until then, we thank all of you again, so much, for holding us up in thought and prayer during this journey. It ain’t over yet.

Much love,

#teamthriller
#November