It’s all relative

3 December, 2017
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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

22 November, 2017
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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]

4 November, 2017
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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

They can send a man to the moon…

28 October, 2017
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…but they cannot for the life of them sort this thing. That doesn’t mean we’re throwing in the towel, however. Not by a long shot.

Our visit to the oncologists on Thursday wasn’t the greatest. It appears that the cancer, despite chemotherapy, gamma knife surgery, and Opdivo treatments, has spread. It’s also invaded his liver and spinal cord. You can see on this screen shot, comparing his CT scan from last week to his first one back in May, that the evil stuff is trying its best to take over.

It’s no wonder he struggles to breathe and eat. It continues to squeeze his trachea and esophagus. But there’s a plan for that…

On Monday, he goes back to Cleveland to have a radiation treatment on his chest. It should relieve the pressure he feels when he tries to breathe, although 24/7 oxygen and breathing treatments at home are helping. He has some minor pain between his shoulder blades, and is taking several steps to alleviate it. That’s also helping.

Dr. Velcheti said that if the radiation treatment gives him some breathing relief, we can restart some chemo to attack the other places. We continue to keep hope alive, because this fight isn’t over. I confess that sometimes, in my more angry moments, I think about how unfair this all is; how it’s putting a serious dent in our plans for retirement that we’ve fantasized about for years. I still plan on renting that RV and road-tripping it to California to see Bob and Kay — a trip we’ve wanted to take for quite some time. The Thriller is all for it, and we can take as much time as we like. We can also take all his gear (oxygen, wheelchair, meds) easily as well. I want this for him. I want this for me. For us.

In the meantime, we continue to be the recipients of incredible love and encouragement and prayer. You’re a part of that circle of support, and I thank you for that.

Till next update…much love,

#teamthriller

Left turn at Albuquerque

19 October, 2017
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Yeah, we forgot to take it, and we ended up in Cleveland. The Thriller is back in the hospital for the time being. He was scheduled for two scans on Tuesday: a bone scan (they want to know why his left side has gone weak) and the standard CT to see how the cancer cells are doing.

Neither one happened. Each time they tried to lay him flat, he began to choke. I guess that comes with the territory: you can’t cough, therefore you can’t clear the emphysema junk out, therefore it lines your trachea and esophagus like a wet sleeping bag, therefore it’s hard to breathe through a straw when all the weight of everything is pressing on your chest.  As we neared home, I had to call Lars and have him come over and carry him up the five stairs into the house. He’s a good son.

It was then that I called the oncologist’s office, and they wrote a prescription for a wheelchair. If he’s not walking much anymore, I still want him to be able to enjoy going places with me. In fact, once I get him home, I fancy a nice walk in the park, since the weather’s been so nice.

Sadly, it will have to wait a bit. Yesterday morning, he was struggling so hard to breathe, I took him to the ER at our local hospital. Five hours later, he was in an ambulance on I-71.

Suffice to say that it is not easy being the Thriller nowadays, which makes his “Come on, let’s get this done!” attitude even more astonishing. I will deliver all assigned hugs you might want to give.

I’m putting in the morning at school, then leaving to drive up at noon. My colleagues (great friends) are covering for my afternoon so the district doesn’t have to pay a sub teacher (again). Mavis has everything covered on the home front with Pax and Remy. Only downside is we will miss having dinner with the Js. Thursday night is our night.

So…what’s on the menu for today, you ask? Well, the scans (full body bone and CT) are happening, except they’re getting creative with sedation; they plan to drug him up almost to the point of “putting him out.” Hoping it works, because they said they can’t use general anesthesia for the tests. Still, I fail to understand how technology can enable doctors to look at cells on a mollecular level and decide where they’re going and what to do about it, but somehow, doing a bone scan while the patient is in partial recline is a mind-blowing 33rd-century pipe dream. Makes me go like this

I guess I’d better get going. Seamus’s dog Chevy is visiting, and while we love him and he’s awesome, he’s the nut who made off with my left moccasin. I’m not sure what to do about that…or where to look.

I’ll keep you posted, fiends. Off to the shower, the school house, then up to Believeland.

Much love

#teamthriller