Monthly Archives: November 2011

Yet another

Thanksgiving was in New Hampshire this year. My brother John, his fiancee Amanda, and her pooch Max traveled from Colorado.  Jem and Jamie drove up from New Bedford with their two dogs Olive and Kala. Jem’s friend Hannah joined us from Boston. My mom, Evalynn and my stepfather Jim flew in from Utah. Ten people, four dogs, one scary turkey (but yummy and benign post roasting) and platters full of delicious food. And much to be grateful for.

Most of the crowd left for home early Friday morning, but Jim and Ev stayed another three days.

On Saturday I celebrated my birthday. That’s seven since my diagnosis with lung cancer and fifty-two total (not shy about stating my age, because getting old is the objective). Once upon a time I thought I’d likely never see the half century mark. And here I am, all grown up and maybe even getting old.

I received many nice cards (like the one on the left from W & C, who always send fab greetings) as well as lots of phone calls from loved ones, packages and three, almost four, Garmins (GPS system).

The first Garmin arrived in the form of a check from my stepmom Carolyn, so that’s the one I will keep. I shall name the disembodied voice of the GPS  after my generous benefactor (who also sings happy birthday to me over the phone every year, and who has the loveliest voice). Thank you John and David as well, and Jim and Ev for offering. I shall think of you all every time I don’t get lost.

David’s gift to me magically transformed into an iPad, which is something I shall get a lot of use out of while I hurry up and wait for appointments. And he also took my parents and Pete and I to dinner at one of our favorite restaurants in Portland, Maine.

The sun had gone down  moments  before we parked our car. As we walked to the restaurant we were treated to an overhead show of the most amazing color of blue; sort of a translucent indigo. It took my breath away (in a good way).  I took a photo and now you can see it too.

11/24/11

Thanksgiving day: turkey by Dave, chili by John, pies and photos by Jemesii.

The path taken

The night before last I fell asleep crying. Not racking sobs; rather just a wee bit of weeping. I found it strangely comforting.

A little over a week ago, in the midst of all the chaos,  I was unable to obtain a refill for fluoxetine (prozac) due to a clerical error. I missed one dose. And then a second. I felt a little odd, as one always does when coming off a strong drug (in this case, an antidepressant). By day three, a funny thing happened. I started to feel more like me. A little less dull; a lot more sensitive.

The first time I started taking prozac was some six months after my diagnosis of lung cancer. The day following my first post chemo scan (where my own hopes of a cure were permanently dashed), my father called to say he had stage IV pancreatic cancer. Dad hung on for another ten progressively hellish weeks. In a constant state of despair, I simply could not stop crying. The prozac dulled my grief and quickly stopped the flow of tears. In fact, I found it almost physically impossible to cry after I started taking it.

Two years later, as a stronger and more upbeat version of my former self, I was curious if my new resiliency was a result of personal growth, or simply the prozac talking. I went off my dose and remained emotionally intact. Six months later, when I was restaged to IV, I fell down the rabbit hole once more. Without hesitation, I turned back to prozac. Until now.

It may seem like curious timing. Life hasn’t become easier or less tragic. What has changed is my perspective; the lens through which I view it all.

I believe that the primary reason for fear is simply comfronting the unknown. Cancer scared the shit out of me until I started living with it. Now it has become my new normal. Quite frankly, death is my familiar too. I’ve certainly thought a lot about my own mortality. And cancer has taken those I care about on a far too regular basis.

Some close friends have expressed concern that I might go to a dark place again. In truth I do have a sense of going down a tunnel from which there is no turning back.

But, I now trudge willingly and without fear (a realistic dose of sadness is another story). It is my path and not without beauty. I’ve made the decision that I wish to be completely emotionally present; without any filters.

Having a terminal illness has given me access to an enhanced existence as well as introduction to an amazing array of fellow travelers. We may have lost a bit of our innocence, but in turn we tend to travel light, be very clear eyed and sure footed, and share a tendency to seize every day. Our relationships quickly achieve an emotional intensity and intimacy that wastes little time, and in general we taste of life deeply. Truth, which does not avoid a very real connection to mortality, has set us free (I refer here not just to those with cancer, but to friends, family and caregivers as well).

Death is an inevitable part of life and also a blessed release from suffering. If we can learn to embrace the journey, perhaps fear can be banished. And it is my goal to see it all with a clear head; to make the experience as full and rich as possible.

Carosum

Another good, brave and far too young person has been taken by this disease. Karin was a 32 old dutch woman and one of the first to post a comment when I began publishing lifeandbreath. She also kept a blog, http://blog.carosum.com/, and remarkably, wrote something almost every single day for the three years since her diagnosis at the age of 29. I always enjoyed getting a comment from Karin, and from time to time would check in on her, although the translation provided by Google was often awkward.

Today was one of those days, and I was stunned by the following message:

Hello dear ones, when you read this then I’m deceased.

In fact, she passed away yesterday, and the blog goes on to say how difficult and pain filled her days had become. The post concluded with this message:

I have so much written in recent years that I no longer have much to say. I think everyone has a good idea of ​​who I was and how I have lived.

I’ll be happy when I finally found peace and I am pain free.                     

Karin Caroline Martine Top-Meijerink
06/25/1979
11/18/2011
My heart goes out to her husband and other family. Rest in peace, my friend.

Cancer is my day job

And sometimes I just have to call in sick.

I take this blog seriously; so much so, that even though there is no time card to punch and no pay check at the end of the month, I really feel bad when I don’t show up.

Almost three weeks ago David and I were guests at the Xalkori launch. It was a magical couple of days and I really need to get a post up about it. I will, later this week. November is also Lung Cancer Awareness month and I sort of feel as If I should be writing every single day. If not now, when?

Truth is, I’m still digging out from a bit of a natural disaster/existential crisis.

On Saturday, October 29th, David and I accompanied Peter to the MIT campus for a Camp Kesum reunion. While Pete partied, we two grown-ups happily wandered the halls, where even the bulletin boards are super smart. And smiling down from one of them was a familiar face; my hero, Dr. Alice Shaw!

Peter had a great time and when the festivities wrapped up we headed to Flour for some yummy roast beef sandwiches to go. It was raining pretty hard and as we headed north, it turned to snow. Arriving home a little after six, the lights were already starting to flicker. At seven, they went out for good.

We are no strangers to power outages. They were commonplace growing up in Colorado, and I have fond memories of my mom lighting kerosene lamps. Once, when living in California, we had no power for four days. But that was a temperate climate, and we still had water.

This storm was different. On Sunday morning we awakened to a frigid house. An apple tree lay sideways across the patio and sizable branches were down all over the yard.

We own a noisy gasoline fueled generator which was wheeled to the breezeway and awkwardly accessed by a utility cord through an open door with towels and rags stuffed in the cracks. It ran a few hours at a time to power the heater in Pete’s 55 gallon aquarium (also swaddled in blankets) as well as a freezer in the garage. All the food from the fridge was stowed in a snowbank, and we wore our coats inside and took turns warming up in front of the fireplace. On Monday I had to go to Boston for labwork, and the last of the water from our electric pump powered well was gone, so I melted some snow (fortunately our gas stove could still be lit with a match) for a sponge bath.

By noon Tuesday it all sorta went to hell. Several leaks had sprung in the ceiling and smoke was seeping from  some heretofore undiscovered crack in the chimney. Already chilled to the bone, surrounded by piles of unwashed dishes and laundry, I now had to worry about the air quality.

I stood there silently weeping and then I played the C card.

Evidently many people had bitten the bullet and secured a hotel much earlier, as the closest available room was an hour away in Amesbury, Massachusetts. I hurriedly packed and the guys came too, for a shower and a hot meal. Clean, I hightailed it into Boston for the Shine A Light vigil at the Prudential Center.

It was, as always, a powerful yet bittersweet evening.

The next morning I had the runs. And an itchy rash of unknown origin (contact dermatitis from the bleach in the hotel sheets? Trial drug related?). I was miserable but also so very glad to be warm and with access to a fully functional bathroom.

On Wednesday David and Peter again drove an hour for showers and we grabbed dinner at the Friendly’s next door.

It turned out to be a very meaningful evening (I’m getting to the existential crisis part now).

The filter on the aquarium had gone kaput, and Pete was discussing what he felt to be the urgent need for replacement (to the tune of about $160).

Money has always been a potential source of tension in our marriage. I left the salaried workforce before Pete’s birth, and in truth my annual contribution was never great. My husband feels a lot of pressure as the sole breadwinner and occasional caretaker, and I harbor some resentment regarding my own perceived financial inequality in this partnership. I would like more than anything to shift the balance of power, but my prospects are not promising at this point in life.

We quibble about small purchases, and any big ticket item requires great negotiation. A GPS has been on my personal wish list for some time. Several weeks ago, after getting hopelessly lost on the way to my friend Melinda’s house, she lent me her Garmin. I love it. It has upped my day to day quality of life more than I could have imagined. No longer am I lost or lonely enroute, as the soothing voice ‘recalculates’ any wrong turn. I really would like one of my own. I would go so far as to say I need one.

When I brought this up (again; I’ve been dropping hints going on a year now) my husband responded jokingly, ” if you’re a good girl, maybe someday you’ll get one.” I did not see the humor in this comment. And then he added, “and as for the filter, Pete has his own money”.

It’s true. We pay Pete for jobs around the house. David’s boss pays David. I, however, remain uncompensated.

On a roll now, I mentioned my perception that perhaps the welfare of the aquarium had been taken more seriously than my own. Pete protested that the fish were very vulnerable to changes in temperature and water quality, that they could die within hours and that he really cared for his fish. It was not admirable, but too easy to do:  I drew a direct metaphor between those fish and myself, pointing out that I too was vulnerable to changes in the environment, was certainly not impervious to mortality and, as his mother, was hopefully cared for.

Cancer is often referred to as the elephant in the room. In my family, it has become more like the mouse; always there, but generally unnoticed. Because I neither look nor act like someone who is sick; it is rather easy for my family to take my own physical challenges very much for granted. I, however, am constantly aware of how close to a physical edge I am. It was not that big of deal for a fourteen year old boy and healthy middle aged man to forgo heat and water; to relieve themselves in the woods and to warm themselves in front of a smoky fire. And our golden retriever was totally on board with the whole camping-in-the-house experience. Thanks to the generator, the frozen food stayed frozen and the fish got along swimmingly. For me though, the entire experience was more than a bit taxing. And, as I explained to them that evening, didn’t need to happen. That there were ready solutions to (some) of my problems; that it was possible to keep me warm and comfortable and hopefully healthy. And that with a little help, (thanks Melinda) I could even figure out where I was going.

It was a difficult conversation, but a necessary one. Sweet Pete reached across the table and took my hands. As we left the restaurant, they both hugged me goodnight and told me they loved me.

I checked out of the hotel the following morning and we had power again by the afternoon. That was Thursday. Friday morning Alice called to tell me Evan had died on Wednesday. So many emotions; anger, hurt, grief, humility, perspective. And ultimately, gratitude for every single moment; no matter how difficult.

 

PS:  Happy 27th birthday Jemesii! Love you so (and still can’t believe you’re 27!)

eleven eleven

A quick break from the posts I’ve been laboring over (really) to report that thanks to Melinda and Kihan, we (Peter, Buddy and myself) celebrated 11/11/11 in style.

Our dear friends booked rooms for all of us at the Boston Harbor Hotel, luxury accommodations located at Rowes Wharf. Our room was dog friendly (as was the entire hotel; Buddy has never been treated with such deference) and had a gorgeous view overlooking the harbor (notice the moon).

We enjoyed a splendid meal at the Meritage (Pete ordered Kobe beef–something he has always wanted to try) and although Melinda and Kihan concluded the evening with some dancing, after dinner Pete and I retired to our room to mark 11:11 quietly with Buddy. It was wonderful! Thank you!

(I should note that our room was number 1212 and that we clocked into the parking garage at exactly 1717.)

Numerous friends and siblings sent along happy eleven elven greetings (thank you for remembering!) and rumor has it that my brother John asked his girlfriend Amanda to marry him (and that she said yes).

Jem and Jamie went out to dinner at their local Applebee’s, which was giving free entree’s to veterans (Jamie served four years in the U.S. Air Force and is now a reserve in the National Guard). Jemesii said it was a very poignant evening, with veterans of all ages represented.

And then, the next morning, after a quick breakfast with Kihan (Melinda was off to Maine to watch their son Christopher compete in the NE Regional men’s college cross country finals–Christopher finished first for his school, Williams, and 7th overall–on to Nationals!) Pete twisted my arm just a little and we made a quick stop at the Boston Aquarium. Twas a satisfying little adventure for all. Melinda and Kihan, you’re the best!

This one’s for Evan

It is with a heavy heart that I write that Evan Spirito passed away on Wednesday, November 2nd. Dr. Shaw (Alice) was kind enough to call me yesterday with the sad news.

When I logged onto my blog today, there were 1311 hits, or views on Wednesday and 534 the next day. That is a bit more traffic than this blog usually sees, and almost all of it was generated by google searches for Evan Spirito (who authored the blog on September 26th). Obviously he touched the lives of many.

Evan was one tough and powerfully optimistic kid. A little over two weeks ago I had emailed Evan wondering if he would like to speak at the Shine A Light vigil in Boston on November 1st. I also told him that I was feeling better. His prompt and (as always) exceptionally courteous response on October 24th gave no indication that things were going poorly;

Hi Linnea,

Glad to hear the LDK is working! I think my new regimen is indeed working as i am feeling better, but i dont have scans for a couple weeks. Thanks for thinking of me, however i do not think im ready to be the guest speaker just yet. 
Thanks Again,
Evan
P.S. Where exactly does the Shine a Light take place?

 

If life were fair, and lung cancer not such a vicious disease, twenty-four year olds wouldn’t die from lung cancer. My heart goes out to his family and his lovely girlfriend and also to Dr. Shaw, who had known Evan since he was diagnosed at the age of twenty-one and who respected and cared for him deeply.

Evan Spirito

SPIRITO, EVAN B., 24, died Wednesday at home surrounded by his family and friends after a valiant three year struggle with lung cancer. A lifelong resident of Providence, he was the beloved son of Anthony and Susan (Baybutt) Spirito. Evan was a graduate of Henry Barnard, Gordon School, Moses Brown and Colorado College in Colorado Springs, Co. At Moses Brown he played football, hockey and lacrosse. At Colorado College he majored in economics and played football and lacrosse. Following his graduation from college, he remained in Colorado working as a ski instructor at Vail. Evan loved team sports and spending his summers with his cousins at his grandmother’s home in Mattapoisett, MA. Besides his parents he leaves a sister: Mia Spirito and his longtime girlfriend, Anne Fallon both of Providence. He also leaves his grandmothers: Nancy Baybutt of Mattapoisett and Ernestine Spirito of Hillside, NJ; aunts (Dawn, Jamie, Mary Lou, Sue, and Kathy), uncles (John, Michael, Tim, and Fred) and cousins (Britta, Celia, Brad, Tom, Andy, Will, Gabriella and Sam). He was the grandson of the late Anthony Spirito, M.D. and Richard Baybutt. A Memorial Service will be held Saturday at 11am in Grace Episcopal Church, 145 Mathewson St. Providence. In lieu of flowers, donation in his memory may be made to the Evan Spirito Memorial Fund c/o Anthony Spirito, 297 Wayland Ave, Providence, RI 02906. Condolences may be left at monahandrabblesherman.com

Published in The Providence Journal on November 4, 2011

*I should add that Evan was no longer on the LDK378 trial, having returned to traditional chemo some weeks ago after progression.