Thursday, February 25, 2010

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, 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

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