I Think I'll Wait 'Til It's Over to Put This Up

Part 1

I learned quickly after Tom's diagnosis mostly to trust (dot)gov, edu, and org websites when looking for educational information about cancer.  While lots of (dot)coms are there to sell stuff, some will provide helpful anecdotal information, which is valuable if you're looking for anecdotes.  When I was searching for information, information that I literally was going to bet my husband's life on, I only trusted (dot)gov's and org's and edu's.  And not just any (dot)gov or (dot)edu.  Along with  Harvard Medical School and its affiliated institutions, my top go-to sites included the NIH (National Institutes of Health), Johns Hopkins and Memorial Sloan-Kettering. They served me well and are eminently readable. The Mayo Clinic was the major exception to my "no-dot-coms" rule.

I have a little time on my hands today to blog, because I need to stay close to home. At home, actually. At home near the bathroom.

I'm prepping for my colonoscopy tomorrow and have started the - ahem - clear liquid part of the process. So here are some sites I'd recommend for information about colonoscopies, and colorectal cancer prevention and treatment:

No offense, Dr. Gastroenterology, but for those of us being so conscientious and getting our colonoscopies starting at age 50, and then following up the recommended every 10 years unless abnormal results are found, when can we STOP getting screened for this type of cancer?

And here's everything you ever wanted to know about polyps but were afraid to ask.

I'm not exactly clear on the benefits of a virtual colonoscopy. You have to go through the same prep process, the verb "insert" is still a major player. But if anything out of the ordinary is found, the doctor cannot take a sample (for a biopsy) or remove it (in the case of polyps). In that case (remember, I'm no doctor), wouldn't you have to have an old-fashioned colonoscopy anyway?

One question I haven't been able to find an answer to online is why this electrolyte solution has to taste so freaking bad. If we can put a man on the moon, can't we at least make this stuff taste like Moxie? I don't think I'm asking too much.

I don't know if it's just because my grandfather died of colon cancer when I was very young and he seemed very old (he was probably in his sixties), but I think of it as an old man disease; certainly it's not front-and-center on my radar. But these famous non-old-men have all been diagnosed with or died of colorectal cancer.

I'm just sayin' ...

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Part 2

I can't not have pictures, can I?

Everything's fine. Back again in 2015.

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Part 3

And I thought this was just too funny not to include.  So during the prep I had a question, and called the doctor's office, and spoke with someone on his staff.  She mentioned in passing, "Oh, I'm late for mine; I need to schedule it for myself."   I made a comment about cobbler's children, and then asked what was probably wildly inappropriate, but I know for a fact I've done worse: "So", I asked, "when you need a colonoscopy do you go to this Dr. Gastroenterology, or do you have your own?" I could hear her shaking her head, responding that she does, indeed, have her boss perform her colonoscopy.  Just think about that the next time you think your boss is way too far up your a$$.

No Dog Yet, You Say?

I started wanting a dog when Tom was sick. I'm sure the pain is the same whether your spouse has brain cancer, or heart disease or any terminal illness (Tom considered his cancer "terminal" with the quotes, having read much about long-term survivors. Few though they were, they were not non-existent.), but brain cancer had already robbed me of my hard-working, cuttingly-sarcastic, animal-loving, handyman-project-doing, car-guy husband, and my sense of loneliness was all the more acute because Tom was alive, but no longer, well, Tom. A dog would love me, and keep me warm, and fill the hole in my heart that I shouldn't have had because I should have just been grateful my husband was there, sleeping right next to me in the bed every night, drinking his coffee and reading his paper every morning. But that emptiness in my heart continued to grow, and my desolation darkened. And that dog? I really just wanted a dog to love me. I wanted somebody to love me. And for God's sake, at least the damned dog wouldn't die of brain cancer.

Then, Tom died. I don't know how else to explain it. Tom died, and the loneliness that I felt finally at least felt normal. My husband was dead, my sons' father was gone, and that the loneliness was expected made it somehow more tolerable. Getting from today to tomorrow became easier after Tom died, as I found myself already partway through the process of grieving his loss. The desperate yearning for a dog slowly subsided, replaced by the quiet belief that there's a place in our family for a dog.

So there we were today, at the Northeast Animal Shelter:  the place Tom took me on our second date; one of his memorial charities; and the place where the sweetest little  Belgian Schipperke x picked us for her forever family. She came with the utterly unacceptable name Skippette, so we're down to business picking out a name. I think her name is supposed to be Zoetje, dutch for "little sweet one". Any dutch speaking readers out there? Please advise.

And say hello to the newest Gentile, Zoetje.

Two Months

April 7. It's been two months since Tom died. Today Boston will have the warmest temperatures it has seen since September 2009, and I used  the morning to throw some grass seed on some bare spots in the lawn and plant the peas I should have planted a week ago (they like it a little cool while they're germinating).

In every previous year, the day we started the garden was long and frantic. We would already have made at least a couple of trips to Home Depot for peat and manure and fertilizer and whatever else normally goes into the garden. Then on the first warm dry day, Tom would pull out the rototiller and turn the whole garden over and work all that stuff into the soil, and every year he would ignore my protests that we don't need to rototill every year. This year, I planted the peas without tilling first. Admittedly and not inconsequentially, I don't know how to turn the tiller on. Even if I did, I wouldn't have tilled this year, because the garden doesn't need it. But this year I don't have anyone to fight with about it.

Who would have thought I'd miss fighting with Tom? Tom and I both liked to have the last word in an argument, and God knows we argued often. I was clearly superior at getting that last muttered "harumph" in just as he was smugly turning to leave, thinking he had just had The Last Word. That just-under-the-wire harumph would always get a smile out of him. But then he'd go and rototill anyway.

Today I don't hear the rototiller or the table saw. Lights are left on, returnable cans collect in bags, waiting to be redeemed. Circulars are recycled, coupons unclipped. I watch the Daily Show, or Colbert,  or something science-y on Tivo, and I won't delete it, thinking, "Ooh, I have to save this for Tom".

And then I remember. His absence fills every corner of every room, and everywhere I look, Tom's not there.

Me, 2 Boys, 4 Cats, 1 Turtle, 1 Frog, No Dogs Yet

Geoffrey was a wee bit miffed that I didn’t mention his turtle in the title of my new blog, so this entry is dedicated to King Arthur, who joined our family just before Christmas. Geoff knew he wanted a turtle, so we went to Petsmart to have a look, and I couldn't believe my eyes when I saw that the one he wanted was $109, and an appropriately-sized terrarium was another $119. I mentioned this to my friend Lynn, who suggested I look on Craigslist.


I had never been on Craigslist before, but I thought I’d give it a try. I looked in the Boston listings for “box turtle” … maybe even plain old “turtle” since I don’t think we had it narrowed down by species at that point. Sure enough, up pops ONE listing: a box turtle and container, with food and water dish, for $25 in Hamilton, MA. So I contacted the person who placed the ad, and after two or three emails back-and-forth we worked out that I would come to her house, since it was a rather cold December day and I didn’t want to expose the turtle to any more outside air than was necessary … but I made sure to mention that I’d have 3 teenage boys with me. (Might this be some murderous whackjob, trying to lure his next victim with the irresistible promise of a turtle and terrarium for $25? – remember, I was under a bit of stress at the time.) I still don’t quite get why it didn’t occur to her that we might have been some murderous whackjob gang, picking our prey based on their “for sale” ads on Craigslist. But it all worked out in the end, happily.

We gathered up a towel and small container so Geoff could hold the turtle in his lap, and piled into the car with Geoff’s friend John, and headed up to our rendezvous point. The seller, Sarah, was an architect whose grown kids were no longer interested in Lula the box turtle, and was thrilled that Lula would be going to a home with kids who would pay her the attention she deserved. And she wasn’t the least little bit offended when we changed Lula's name to King Arthur, rather arbitrarily changing his gender in the process. Sarah was making seasoned olives as Christmas gifts that day, and her kitchen smelled fantastic. She even sent the recipe along, so act surprised if you get lemony olives for Christmas next year.

Then we piled back into the car for the ride home, and it wasn’t until we got to our driveway that we realized that Geoff went the entire ride home with his seatbelt unbuckled.

So we are, officially: me, two boys, four cats, a turtle, a frog, and no dogs yet. And I haven’t actually considered what I’ll do if we ever find that loyal, smart, friendly dog who doesn’t smell when he’s wet and doesn’t ever poop. Will I have to change the name of the blog then?
 

Ready, Steady ...

It had been a long eighteen months, and absurd as it sounds, Tom’s death was sudden, and unexpected. I had read all the books, attended all the support groups, had the counseling, dragged my kids, quite literally kicking and screaming, into counseling. As prepared as I was, I wasn’t ready.

I would have told you I was ready, of course, and I would have believed it myself. I had a list of account numbers, and login id’s and passwords. I had a list of phone numbers, and email addresses. I had a wallet card of medications, and doctors names and addresses. I had a durable power of attorney and a medical proxy. We had talked about his wishes, and I was comfortable with his requests. I had a funeral home picked out: I wanted it nearby and convenient, but I didn’t want to drive by it every day and think to myself, “That was where Tom was …” It couldn’t be en route from our house to one of the kids’ friends’ houses, either, so they wouldn’t think, “That’s where Dad …” every time they visited that friend. So I very cleverly picked one on a side street in Medford. I was prepared. It was all under control.

I was not ready for the wheelchair, or the seizures, or the night nurse, or the falls, or the ambulance ride. I was not ready to sit in the living room until the kids were awake to tell them Daddy had died that Sunday morning.

I am not ready to make sauce, or lasagna, or meatballs. I am not ready to balance the checkbook, or pay the taxes, or fix the fence; but I do each one of these tasks as they come up, and it turns out some of them I do pretty well.

But I will never be ready for the silence I hear where his snore is supposed to be.

If Stuff Changes and You Don't Like it, You Gotta FITYMI

I hate sleeping on the weekend. Several years ago we bought a very nice mattress - the kind that's (I'm eyeballing it from the desk here) about 16" deep, with another 2" pillowtop on top of that. Making for a wonderful, comfortable bed that's great for sleeping, and reading, and knitting, and cuddling -- passive AND active! Here's the thing: I took an Ambien a couple of hours ago because I got such a rotten night's sleep last night, and have a long day (fun day, but long) ahead of us tomorrow, so I want to get a good night's sleep tonight. The blanket is turned on; the cats are all in position, waiting patiently for the cuddles, scratches, and covers to be rearranged. But damned if I can get into that bed. I'd much rather be here, jabbering God-know-what on a keyboard that's the wrong size so I keep making typos. A little while ago (when it was already well past my bedtime) I got the bright idea to make lemon squares for a friend who has invited all the usual suspects for a last-minute dinner. Once the lemon bars are done, what excuse will I use?

David and I were talking about the term "fake it until you make it" on the ride to school today. I was trying to explain how we learn thing through exposure, that sometimes grownups don't really believe what they're trying to pass along under the guise of "wisdom". He's not a believer, since he thinks lying is immoral -- wait: what did he just say? Anyway, he's not ready to try "FITYMI" Which means one thing: I'm going to have to be the grownup here, and sleep in the bed, (on Tom's side of the bed because I have always slept on his side of the bed when he was traveling ... keeping it warm until he gets back.) I'll sleep in the damn bed for what, three weeks? a month? and then eventually it will be my bed, my side, and I'll be comfortable sleeping alone.

I'll know I will have made it the morning I get out of the right side of the bed. With any luck, I won't have grown warts, or developed a third arm growing out of my ear. Then maybe David can face a tiny, albeit paralyzing, discomfort of his own choice, and he'll learn the magic powers found in FITYMI. I love you David.

Gotta Start Somewhere ...

... so I think I'll import the blog I started in the summer of 2009, long after Tom was diagnosed in September 2008, midway through his journey. It took me a while to figure out normal, version 2.09. Still working on 2.10.

Background Story
Tom's struggle actually began long before his diagnosis in Fall 2008. We attributed his uncharacteristic clumsiness and speech troubles to exhaustion after a long and stressful spring spent driving back-and-forth to Long Island to help his mom, Madeline, and his ailing father, Joe, before Joe passed away in May. By midsummer, we were sure something was wrong, and were just sitting tight until a regular physical which was already scheduled for late August.

We knew the doctor had serious concerns when he sent Tom for an MRI Saturday morning at 6:30 a.m. Not wanting to alarm the kids, we told them we'd be gone when they got up, but that we'd probably be home by lunch. It became clear we were going to miss that deadline - they wouldn't release him from the MRI unit, instead walking him down the hall to the Mt. Auburn ER, then moving him by ambulance Brigham & Womens ER, ultimately setting him up in BWH Oncology. Linda made a quick phone call from the ER -- Hi Mom, it's Linda. Tom has cancer, can you go get the kids?

Now, what I don't know about cancer can fill the planet Jupiter, but I've learned a bit. The very first thing I learned about cancer was that when there are multiple tumors it usually indicates metastasis: spreading. A single tumor is likely the primary site, and when it spreads, it multiplies. The doctors all agreed that since Tom had 6 lesions in his brain, it likely spread from somewhere else. So many scans and tests later - PET, CT, x-rays, visual inspections, blood draws - without finding the source, a biopsy was in order. The next thing I learned was that some biopsies take longer than others. We waited over a week befor finally hearing confirmation of what they said that first day: that Tom has Glioblastoma Multiforme, grade IV. GBM/IV. On a scale of I to IV, IV being the most malignant. Holy crap.

A week in the hospital recovering.
A week in rehab.
Six weeks of combined radiation and chemo.

We were glad that the chemo, in the form of a pill, was not as toxic on his system as so many can be. He had few reactions from the targeted radiation; the most obvious side effect was losing his already scant hair in the spots where the radiation was focused. We could live with that. And he had a wicked tan, but only on his head.

After a break from radiation, chemotherapy started again in December; but by mid-January '09 tumor progression was seen on his films. So now, instead of GBM IV, it's recurrent GBM IV. And we're both thinking, "This club sucks. Where do we cancel our membership?"

Plan B came to us in the form of Novocure, a treatment device in clinical trials at, among other places, Beth Israel (BIDMC). An array of 36 electrodes was placed on his head, replaced every 3 days or so, that created an electromagnetic field (EMF) that destroyed cells as they divide, so the cancer cells would take a hit, while the relative stability of brain cells protected them from harm. The device worked for Tom for a time, but by the end of May, his aphasia had returned in full force, and another MRI showed more growth.

Another clinical trial.
Another MRI.
More tumor growth.

So now Tom has started on a regimen of Irinotecan, a chemotherapy drug, in combination with Avastin, which was in the news in Spring '09 when it won FDA approval for the treatment of brain cancer. It's an antiangiogenesis agent, which prohibits the development of new blood vessels, ultimately starving the tumor and killing it.

That was this week, and that brings you up to date with Tom's story. Stay tuned.

And once again, we thank you so much for your many good and kind thoughts and prayers.

Sunday, August 2, 2009
We almost had an honest-to-goodness date yesterday, at least Tom-and-Linda style. On our way to blueberry picking (just the two of us) we decided to stop off at Bldg 19 in Burlington (?). After some wicked bargains and the requisite bag full of $.25 Table Talk mini pies we headed to Wal-Mart for some canning supplies, then on to Parlee Farm in Tyngsboro. We must have hit the exact prime time for blueberry picking: the berries jumped off the bushes and into our containers by the fistful. At the moment I'm drying some blueberries and sterilizing equipment for jam and, new this year, blueberry syrup. I don't know what to call dried blueberries, but I think I'll go with blaisins (I made that up).

Sadly, we learned yesterday that a friend from Kids Count Too, a group for kids with a parent with cancer, that had been sponsored by The Wellness Community (now know as Facing Cancer Together) lost his long, hardfought battle with this awful disease. Our thoughts and prayers are with Michael, and especially with his wife, Nancy, and their boys, Eli and Jacob.

I don't want this site to be a morbid recounting of Tom's medical updates; I want it to be a reflection of the life we're living. As Tom says so very often, where there's life, there's hope. And I hope you all have a happy, healthy, rich and full week. - Linda

Thursday, August 13, 2009

Tom had his biweekly (every two weeks) infusion on Wednesday and it went smoothly. It was only his second infusion of these drugs; but so far no major, disabling side effects, which we’re glad about. It was the first time his infusion took place at the Dana instead of at the research center where he had been participating in a clinical trial. The nurses and staff were (as I have come to expect from every single individual and department at the Dana) kind, professional, knowledgeable, supportive and compassionate. Turns out they like chocolate chip cookies, too.

Unfortunately, Dr. Drappatz recommended Tom not drive for a while, due to a blind spot that’s developing in his visual periphery. He’s also gotten a bit clumsier, with maybe some slowed response time, too. I cannot say I’m glad he’s not driving, but I am relieved. As the avastin and irinotecan do their jobs, we expect the tumor to shrink and swelling to reduce; at which time Tom will hopefully be behind the wheel again.

Dr. Drappatz did specifically okay travelling, so a trip for work coming up soon is still a go. Between cabs and coworkers, he’ll get wherever he needs to be.

Not too much else to report – thanks for checking in with us.

Thursday, September 24, 2009

I know it’s been a while since we posted anything. When it comes to cancer, I think the absence of bad news is good news. Tom continues with the same every-two-weeks chemo schedule and his monthly mri’s, which show tumor stability. The August mri actually showed a slight improvement from July, and September’s mri remained stable. His symptoms continue to develop though, including a noticeable asymmetry in his gait. The main tumor being on the left side of his brain, it’s mostly his right side that’s affected. It’s actually good that he’s right handed, as he’s using his right arm more than he would if the sides were reversed and he’d be having greater problems were it his non-dominant side that was affected.

David and Geoffrey are back in school (8th grade at BC High Arrupe Division and 6th at St. Raphael in Medford, respectively) and so have a bit more structure to their days than they did over the summer. David’s joined the science fiction club, and Geoffrey’s favorite subject is science.

We’re hoping to take a long weekend to see Niagra Falls in the coming weeks – or maybe months, since I’ve let all our passports expire. We can’t go all the way there without going to the Canadian side, so hopefully we’ll get them renewed and plan 4 or 5 days up there either before it gets too wintery, or after it starts to thaw. Although it might be nice to see the falls in their frozen state, I’m not too fond of being in that frozen state, myself!

Thanks for taking the time to catch up with us. When we have more news about Tom, we’ll post it.

Saturday, October 3, 2009

So, Tom and I were at Sears in September, shopping to replace our about-to- bite-the-dust front loading washer. We found what we wanted, negotiated the price and arranged delivery. Then the salesman mentioned that we can have the delivery and removal charges rebated if we used our Sears card. Since I don’t have a Sears card, we decided to open one on the spot. As I filled out the application form, the salesman mentioned the apr, which was in the vicinity of 15 to 25 percent, which I didn’t really pay attention to since Tom always pays the balance. Every month, on time, and in full. But the salesman persists: most people fall in the 25% range, so don’t be surprised or disheartened when it happens that way. He was shocked, SHOCKED I tell you, when our rate came in at 12%. He said he’d never seen such a thing before, and couldn’t stop remarking about it. I didn’t give it another thought, though, because Tom ALWAYS. PAYS. IN FULL.

Then I got home, got my machine (which I love: a Maytag Epic Z and already paid for, mind you) and thought about the salesman, and his comments, and my apr, and started wondering about my credit report.

I haven’t paid a bill since about 2004 when I forgot to balance the checkbook for about 4 months, and landed us nearly fully into our overdraft protection, and then, when I deposited the money to cover the overdraft, didn’t understand for about another 2 months that they’d still only take some minimum payment from the account for the overdraft and then add in monthly service charges to the tune of about $30 a month for the privilege. Tom was pretty pissed about it. But I digress.

Back to 2009: I went to the official “free credit report” site, http://annualcreditreport.com and got my actual, honest-to- goodness, no-strings-attached credit report (sans credit rating). There it was: about 15 cards, accounts, utilities and miscellaneous recurring charges; every one of them paid on time, in full, for the twelve previous months. Not one late payment; not one day late or one dollar short.

This, from a man who was diagnosed with multiple brain tumors exactly that same twelve months ago. Not one missed payment. It’s his responsibility to pay the bills, and he pays them. Just like that. Me? If I’d been diagnosed with multiple brain tumors 12 months ago, I’d be drunk, under the covers, and my kids would be fighting over the bag of nacho cheese Doritos they’d be having for supper in front of the tv watching Family Guy. But my husband, who has Important Things to Do, does them. Just like that.

What a mensch.

Wednesday, October 7, 2009
Sitting at the Dana between appointments this morning. After a visit with Abby, Tom’s nurse practitioner, the next in line will be Jeannine, for the infusions. When a patient in the waiting room is not sure if he might be the “Robert G.”, who was just called, the aide sees the question on his face, approaches him and converses privately. No shouting across the room, no turning on her heel with the thought of “It’s not my job. I just call the names.” I thank her for that.

DFCI staff consistently exhibit kindness when they see the confusion, concern, worry, fear and every other emotion you might expect to see in the faces of cancer patients in the neuro-oncology unit. They greet returning patients with a smile and a warm hello and maybe even a hug; and do whatever they can to ease the pain they see in the newcomer’s face.

Tom has on occasion had to wait longer than I might have liked, but I also appreciate that the reverse side of that coin is that no provider has ever rushed us through an appointment, even when I know they’re running behind. I thank them for that.

Jeannine will fuss over Tom, making sure he’s comfortable and warm, neither hungry nor thirsty. She’ll even fuss over me, checking for the flush that comes right before I burst into tears, which I won’t today, but it’s not like it’s never happened … She’ll make sure we know which drug is being infused, make sure we don’t have any questions or concerns about the drugs, or the side effects, or Tom’s symptoms in general. I thank her for that, too.

Tom’s right side continues to weaken – to the point where today they want him to stay in a wheelchair while he’s in the waiting room. It’s busy here, with lots of foot traffic; and the risk of a fall is just too great. The side affects of his chemotherapy drugs accumulate with time, and he’s beginning to feel the effects more and more after each infusion. His hair continues to thin, particularly in the areas that had been most slammed by the radiation therapy – can that really have been a year ago? It has been, and while we can’t know where he is on the cancer continuum, I do know we're glad he's here.

Friday, October 23, 2009

Tom’s had a pretty eventful couple of weeks. A quick visit and dinner with all the Gentiles on Long Island (all of “our” Gentiles, that is) … a stable mri … no news is good news on that front, that’s for sure. In fact, with a couple of stable mri’s under his hat, now he’s moving to an 8-week mri interval. He’s continuing, of course, with infusions every two weeks.

Tom is taking an extended medical leave from Lincoln. On regular sick leave for six months until LTD kicks in, he’s resting, puttering, and working on some of the projects on his now-very-long to do list. After a year of virtually no home projects, you can only imagine the litany of everything that’s wrong with the house, yard and cars; some of which he can easily accomplish and cross off the list. It’s always satisfying, isn’t it, to cross something off your to-do list?

David turned 13 earlier in the month. We celebrated with dinner at one of his favorite restaurants – The Chantey at Marina Bay in Quincy (try the Chantey Burger) – and several music-related birthday gifts. He’s performing at school this week on his Flying V guitar. If I didn’t mention this earlier, he saved all spring and summer for it, and paid for it himself. I’m very proud of him for that. I posted a pic.

Geoff has orthodontia coming in the very near future. This week he had the little rubber spacers installed that make room for the bands but that feel like you have popcorn stuck between all your teeth. I remember that as the worst part of getting braces. He’ll have the train tracks put on next week. I’ll post a picture of that, too.

So we’re hunkering down, getting ready for fall, and winter, and spring, and next summer, looking forward to every day. Take care, one and all.

Tuesday, November 10, 2009
Brain cancer is a different kind of deadly. Brain cancer wracks the body, but takes a life by stealing it one memory at a time.

Tom and I met in May, just at the start of gardening season, and one of my first memories is of him planting the garden, me standing behind, with his tanned pate looking up at me. I have always had a fondness for his bald spot and I think my greatest simple pleasure now is caressing it. I like it more than chocolate. He likes it scratched, rubbed, stroked and I always give it a kiss goodbye when I leave for work in the morning, though I particularly resent the four-inch scar that runs horizontally from one side of where his hairline used to be to the other. It’s a flashing billboard of what this last year has wrought upon our family. But his shiny, smooth bald spot is my beacon, guiding me every day back to that moment.

We were in our late 30’s when we met. Tom, not one to waste time, told me some of his life’s plans early on. We were at Hsing Ha House, a Thai place that used to be on Mass Ave. underneath the Dolphin. He wanted to get married (although not necessarily to me, he pointed out, as it was only our third date), have a couple of kids, and then move someplace I’d never heard of: Qua-something-or-other. Thirty-seven and well aware of the statistics that even then had me more likely to die in a terrorist attack than marry, I responded, “Sure, that might work for me” and at the end of the night I went home and looked it up on my map. This was the early nineties, mind you, so there was no Google, and with my Mac Classic, there was no internet to speak of, either. There was only the giant National Geographic map I had hung in the foyer of my rent-controlled apartment in Cambridge. I searched for hours, knowing only that it was someplace in the Pacific, before I finally found Kwajalein … Yikes! He wants to what? Where? THERE? I hang on tight to that moment.

My husband is a boob man. No doubt about it. He likes them. Years ago, we were newlyweds and I was tired of him noticing other women’s breasts, so I thought I’d pick an easy fight: “Points of interest at one o’clock.” He turned and looked, appreciated the view, and said with a smile, “Linda, you’re a great wife.” I’ve been pointing them out to him ever since (okay, in pig latin when the boys were small, and not so much at all once they got to be “of that certain age”). In a million years I wouldn’t tell Tom anymore about a view to be seen with the mere twist of the head or glance of the eyes. He’d misunderstand, and I’d have to say it ten times, probably ultimately pointing and gesticulating, and generally making a scene. Finally rolling my eyes, exasperated, it would be, “No, Tom, I mean ‘Look at those great boobs’”. The moment would be long gone. That moment is gone, but I can hold on to the memory.

Far too many moments are consumed by cancer now. Tom’s memory and speech and motor skills continue to decline. He’s enjoying “retirement”, and I’m loving all the laundry that magically gets done while I’m at work. Now, if he could just invent a machine to clean the bathroom ...

Our history has been one of tiny moment followed by tiny moment. In no particular order, these are a few of my favorites. I’ll never let them go.

Friday, December 11, 2009
I didn't mention too much about Tom in our Holiday newsletter, and thought a separate update might be in order. Unlike all of my earlier journal entries, I did not share this one with Tom before posting it; you'll see why by the end, I'm sure. Frankly, Tom's disease continues to progress, some days almost imperceptibly, some days in great bounds. But every day I see something new to worry about.

We fight constantly about having him start to use a cane; his n/o has recommended, prescribed, cajoled, and very strongly urged him to start using a quad cane (that's a regular cane with four little feet on the bottom for stability). Falls are becoming more common; not an every day occurance, thank goodness, but often enough that I worry about it when I am at work, and worry that one of the boys will come home and find him at the bottom of the stairs. I make huge efforts to be the first one home on school days!

He also needs, and also refuses to consider, a brace for his right foot; a simple, fitted, L-shaped piece of plastic called an AFO (ankle/foot orthotic, I think) which will keep his right foot from flopping, a major cause of falls in the first place. But you know Tom, stubborn sob he is, I'm certainly not going to change things at this point. So we keep stairs to a minimum and try to keep surfaces flat.

And just to be clear: it's the sob in him that's gotten him this far into his diagnosis, and I wouldn't want to give up one cell's worth of his fighting sprit. I just want him to wear the damn brace ...

Tom's language skills are frustrating him, too. If I could only figure out how his brain works, I might be better at deciphering what he's trying to say. It's very frustrating for him to see himself losing those language skills that make us sociable. Even the most solitary among us needs other people to talk to, and it's sad, and frustrating, and infuriating to watch this happen to the man I love. That so many of his thoughts go unshared hurts my heart.

So we continue, one day at a time, because it's what we have to do. We do what we can, and try not to worry about the stuff that doesn't get done; clearly that stuff will float to the top when it needs to.

If it's in your repertoire, could I ask you to pray for Tom and the boys? And me, too, I guess. We all have our own private struggles that cancer has brought, uninvited, into our lives. If you don't feel like praying, a stray good thought would be greatly appreciated, too!

I do wish you all, as I said in the holiday newsletter, the very happy, safe, healthy new year.

Love, Linda

Tuesday, January 5, 2010

Thought I’d start the New Year off with an update … so better late than never!

Even though Tom’s images have remained stable since late August, it’s hard to stay optimistic about this given his continuing increase in symptoms. His language and gross motor skills (by which I mean walking) continue a slow, steady, deterioration.

But it seems like every week there's a punch in the stomach. This week it was witnessing the trouble Tom had clipping coupons. One of those images that has been burned onto my retinas is Tom at the dining room table reviewing the circulars on Thursday morning when the Globe arrives, and then clipping his coupons and making The List on Sunday morning – of course he can’t make his list until he sees the Sunday coupons. It’s been that way for 15 years, and it’s supposed to be that way until he’s 82. We were supposed to be the Bickersons, that elderly couple you see in the supermarket going through the coupon wallet, checking items off the list, and then shuffling home with our discounted treasures. He’s supposed to be chiding me for trying to pick up something that’s not on The List. Something we don’t have a coupon for. That’s the worst of both worlds: a full-price impulse purchase. Oh, I can feel Tom’s glare as I write this!

I did the grocery shopping this week. The List was short, and the day was so cold and windy and snowy that I easily convinced Tom I could do it by myself. Then, at the last minute, I scammed Geof into accompanying me, since I just didn’t want to go by myself. We were in-and-out in record time, but I oh, so missed shopping with Tom. Tom’s the shopper in our family, so methodical, so attentive, so able to remember what’s in the coupon wallet and when it’s going to expire. I didn’t even remember to bring the coupons. Don’t tell Tom …

Here’s hoping Tom’s feeling a little better, and the weather’s a little more cooperative, next Sunday, when you’ll find us first at Shaw’s, then the bread store, then Stop & Shop. If Johnnie’s has an irresistible deal, we’ll swing by there on the way home, but I can usually figure out a way to talk him out of that stop.

That’s the way it’s supposed to be.

Wednesday, January 27, 2010
Time for an update. Sadly, but not unexpectedly, Tom’s condition continues to decline; I can often see changes literally from one day to the next. He has discontinued chemotherapy, and Hospice of the North Shore is providing in-home hospice care daily. He has a home health aide coming in every day, and the nurse visits two times a week. Tomorrow, the hospice doctor will come to the house to meet Tom and assess his physical situation and surroundings.

Prior to hospice coming onboard, Tom had started to fall every day. The stairs were a particular hazard, and I’m relieved that we have been able to set up an arrangement that keeps him on the second floor, so the stairs don’t pose a problem. Our only full bath is on the second floor, so staying downstairs was never really an option. The hha keeps things safe in that most dangerous room. We’ve moved a recliner into the bedroom, where we also have the tv and tivo and dvr and dvd player for company. Tom’s seen more Food Network programs in the last ten days than in the previous 6 years – and that’s saying something! I also set up a small table so we can still share meals at dinnertime. I was very concerned with Tom upstairs that he would be isolated from the rest of the family, but sharing dinner has really helped normalize things.

Keeping things short-and-simple tonight, I thank you, as ever, for your good thoughts and kind wishes. - Linda

Friday, February 5, 2010
Tom had a very bad day yesterday -- the worst so far, suffering several seizures (his first ever) in 90 minutes. The hospice nurse happened to be visiting the house when they began, so she was able to get them under control. She arranged residential hospice at Kaplan House at Hospice of the North Shore (here’s a link to their site), where we arrived this morning. He is somewhat aware, but heavily sedated to control the seizures. He responds to my voice, at least, by reaching for my hand.

Since the very first word we heard about Tom’s cancer, I have prayed that the end would be without pain and without fear, and at the moment, at least, this seems to be the case, and I am immensely grateful for that. Tom seems to be stable, and comfortable, and is being very well cared for by the wonderful medical and support staff I have met here today. Please keep him and the boys in your thoughts today. Love, as always, Linda

Sunday, February 7, 2010

Thomas Joseph Gentile
January 17, 1953 to February 7, 2010

Sadly, I must report that Tom died this morning at the hospice house. He was being carefully and lovingly tended to by staff, and was comfortable and at peace to the end.

As always, I want to thank the friends, family, colleagues and medical professionals who have made these past many months easier for Tom, for me, and for David and Geoffrey with your good thoughts, kind prayers, and a helping hand when needed. I thank each and every one of you, and ask you to keep a warm hand on the hearts of your most beloved today, tomorrow, and always.

We will hold a memorial celebration in the next couple of weeks, and I’ll post more when the details are worked out. Love, Linda