(This section will probably be modified occasionally as I discover more thoughts to share.)
So, why have I gone through all this time, effort, and emotion to share this "continuing saga"?
If you've learned anything about me by now, you must know there isn't a single reason! How about these?
- First of all, since I've told the story numerous times over the years - in various forms - having it all in a centralized location simply makes it easier when the situation arises. If someone wants "the whole story," he/she can simply come here - or we can print it all out.
- Since I've been dealing with a rare form of a rare form of cancer, there may be some information in here that could be helpful to anyone else who finds out that he/she has been afflicted with this disease.
- Finally, some people have actually found this story inspiring and have suggested that it might do the same for others.
In this final section, I'd like to reflect by sharing some correspondence I've received, some items I've posted - and some writings that have inspired me. I've also tossed in a few thoughts that haven't fit anywhere else. Since reflections are rarely organized, this section has been arranged as a series of random thoughts - some long and detailed, others less so.
The Whole Story?
Believe it or not, although I've documented much of my experience with cancer in these many pages, I've actually left a few things out.
Much of what you've read consists of the stories I've most often told (or written) to people. There are some elements, though, that have simply not fit into this narrative. They have had no less of an impact on my life with cancer, though. These include (in no specific order) the following:
- The precocious boy (no more than 10 years old), who upon discovering my inability to competently play his video game, decided it was much more interesting to find out why my face looked different.
- The joys (!) of interviewing for jobs, featuring the manager who, during my first round of "dueling eyeglasses," asked me in all seriousness, "Do you realize you are wearing two pairs of glasses?"
- The emotions of the earring counter.
- Photographs - a necessary evil.
If you're really curious about these things, use the contact form to send me a e-mail message.
Reflecting on the Forum
Whenever I've told this story (either in person or in writing), the most frequent reaction lies somewhere between amazement and reverence for the way I've gotten through everything that has happened over the years. It has been difficult for me to accept, since I always felt that this experience was simply something I needed to just "get through and move on."
Once I joined the Cancer Forum and discovered I had some valuable information to share, it became just as easy for me to provide information and support as it was to accept the support others offered Ken and me. More recently, as the urgency of my own situation has lessened, I've gained a great deal of satisfaction from serving as an "information source" for the kinds of experiences I've had. As some of the Forum stalwarts recall that I've been dealing with adenoid cystic, I get assorted e-mail from folks who "wander into the Forum" wondering about this strange cancer they've never heard of. Not only have I heard from patients, but I've even corresponded with a doctor from England. It's all been quite touching.
While on vacation in San Francisco in December 1995 (Yes, Ken had another conference, I had the vacation time to use - and I needed to see how well I could do when I was much healthier!), I posted the following in response to someone's quandary concerning emotions (in part):
You ask whether an "emotional firestorm" awaits. It does and it doesn't, depending on your general emotional makeup. ...I found that thru the surgeries, radiation - and stuff associated with the recurrences diagnosed a decade later - that I went about life "with blinders on." I don't recall crying on breaking down upon receiving "the official word" - in a way, it was something of a relief that there was a reason for all the pain I'd been experiencing. The emotions eventually came out (they almost have to) much later - but usually over strange things like people being unable to deal with my disfigured face, or just amazement over what was happening all around me at the height of the problems (such as the family's wait thru all those hours of surgery).
Looking back, perhaps the reason I didn't have the big emotional scene that affects many others was the fact that no one ever told me I WOULDN'T be able to do anything - and I could live a perfectly normal existance. I was also fortunate to be told early on that "cancer doesn't have to be a death sentence." In addition, I've been fortunate to stumble onto some excellent doctors - and it sounds like you've been equally lucky thus far.
So, don't think there's nothing wrong with your feeling as you do - but don't fight the feelings if they do come along.
In September, 1994, Joyce Brabner posted an announcement to the Cancer Forum concerning a book she and her husband, Harvey Pekar, had written called Our Cancer Year (published by Four Walls Eight Windows). Harvey was a cancer patient suffering from non-Hodgkins lymphoma, and this black & white comic book describes what happened to them during the course of his illness and treatment. Joyce's post included the following, which spoke volumes to me as I neared the one-year anniversary of my brain surgery: (Reprinted without permission)
We're suddenly supposed to be cancer "experts" or role models although there are, as far as I know, at least 100 different kinds of cancer and everyone copes differently.
We are not inspiring people! We don't glow from within with secret knowledge. Cancer wasn't a wonderful chance for us to grow. We know an awful lot of people braver than we are and you do, too. We screwed up big time, more than once, and were sometimes very hard on each other. We weren't able to stop time, so we had to live through everything else that was going on as well. We weren't the only people in trouble that year. What happened that year was ordinary, and - finally - bearable.
I think Harry summed up my experience with the following phrase from his book:
You don't have to be a hero to get through, you just gotta keep breathing.
A few months later (December, 1994), I posted a summary of my own feelings in response to someone's question:
People have kept wondering how I've managed to "stay positive" thru this mess that (to me) sounds worse than it is. I suppose I can point to a few factors:
- I've been fortunate in that we've managed to stumble onto VERY good doctors. Although we found the first ENT in the phone book, it was him who passed my biopsy around and eventually referred me to the folks at Mt. Sinai. I was sent to the doc that performed the 11/81 surgery "not only because he's a fine doctor, but also because he's a human being." It was only when the lung business started that we began to discover that the doc we found in the phone book had a darn good reputation himself.
- I've been fortunate in that my situation has been such that no one's told me I CAN'T do anything other than lead a normal life. I've learned to listen to my body - it tells me in no uncertain terms when it doesn't like something. The key is to figure out what you can do - then figure out how to get around what you think you can't do. Sometimes there may be something you just can't get around, though - and you may just have to accept it. Depending on the circumstance, this may or may not be easy to handle.
- I'm VERY fortunate to have a wonderful husband, who puts up with a lot, if you know what I mean. This stuff is probably more difficult for families and friends than the patient himself/herself - after all, the patient gets to sleep thru all those sessions in the OR, etc. I've also discovered that this stuff is one heck of a way to find out who your friends really are. This is especially true for those who get left disfigured in some way by cancer - be it surgery, radiation, etc.
Separation Anxiety From Your Doctor?
As we all know, life is experienced in stages; each bringing with it its own trials, tribulations, and tastes. Things that appealed to us at one time may no longer seem the same at another, later time. Relationships grow, change, and/or cease to exist (perhaps to be revived later). Cancer or not, I certainly see certain things differently now than I did many years ago.
In November, 1994, I had my annual visit with Dr. Sullivan. During the course of the visit, he concluded that since I was already seeing so many other specialists, and that I didn't live near his Red Bank office anymore, I no longer had to continue seeing him. On the surface, this was probably good news - one less doctor to visit. But I was left with mixed feelings, as I shared with the Cancer Forum on December 1, 1994 (in part):
Hot news from here is Tuesday's annual visit with the no-longer-very-local ENT. After 15 yrs, he told me that as long as "nothing major" happens, I don't have to schlep down the Garden State Parkway to see him next year - as long as I forward copies of any reports I get (CT scans, etc.) in the interim from the folks at Mt. Sinai, etc.
While this is certainly good news, I couldn't help but feel slightly traumatized as Ken and I walked out to the car. Gee, this is the doc we picked out of the phone book when the pains in my ear were too much for Ken to handle anymore (We were simply told "there are good ear doctors in Red Bank".)...the doc who seemed even more scared than us when 2nd and 3rd opinions called "the lump" adenoid cystic...the one who got taken aback when I told him I'd known him almost as long as I'd been married. Separation anxiety, anyone?
On the other hand, it felt kinda weird that we seemed to know more than he did about certain things nowadays. I guess CIS, Internet, and 5 operations in 2 yrs can do that to you...
One of the "occupational hazards" of joining any close-knit community is the profound sense of loss when someone leaves. As you can imagine, this can be especially painful in an on-line community such as the Cancer Forum. Even though most of us may never meet face-to-face, we've been able to draw upon each other for support in such unique ways over the years. It can make the news of someone's passing all the more difficult to accept.
Barbara Stone was the self-proclaimed "Forum Mom" when I joined the Cancer Forum in January 1992. She was almost always the first to welcome each newcomer with words of encouragement and "Love and Prayers." Barbara gave of herself willingly, inspiring those of us who eventually became regulars to do likewise. I like to think this tradition continues on the Forum to this day. We tried to meet Barbara in person when our square dance travels took us to Detroit in 1994. Alas, we couldn't synchronize our calendars, and we missed each other. How sad!
Barbara passed away in June, 1995. One of the system operators of the Cancer Forum summarized the funeral events for the Forum (in part, reprinted without permission):
You cannot believe what an a range of astonishing human beings Barbara attracted over her lifetime. Even the prelate she dragged out of retirement to do the honors is a goldplater. The events of the weekend, the conversations, the pure unadulterated love and kindness and khesedh in the air were heady. The weather was perfect. PERFECT! Absolutely wonderful Barbara weather as we stood at her graveside or wandered the church grounds. God knew He'd better shine His shoes and get it all right.
You were absolutely right. We are dealing with a Saint, here. And she shall not ever leave us because she lives on in memories like yours and mine and thousands of others who found that she had answers - or at least clues - to the horrifying mysteries we all face.
We will never see her like again.
But now we know what to look for...
Trisha McDonough was one of those Cancer Forum members we were fortunate enough to meet in person. She arranged a gathering at a Greenwich Village (NY) bistro in the spring of 1994, while I was in my wig-wearing days. A petite lawyer who'd undergone various experimental treatments for breast cancer, Trisha was a bright, determined young woman.
I was shocked when I logged into the Cancer Forum late that fall, after an absence of several weeks, to discover a message that Trisha had fallen so ill "she may never be able to log on again." She passed away in December, 1994. Ken and I attended a memorial service in January, and I posted the following to the Forum:
I'm sure some of you have been waiting for this, so I'll do the best I can - deciphering notes written thru tears isn't easy...
Trisha's memorial service was held in the Greenberg Lounge at the NYU Law School yesterday (Friday, Jan. 6). We found it a very interesting site: Large, "old New York" style room (if "The Paper Chase" took place at NYU, it would look like this.) with portraits of Law School deans on the walls, and pictures of women alums who've gone on to judgeships on the walls in the immediate lobby. A collage of pictures and newspaper clippings featuring Trisha sat at the front of the room. A bagpiper in full regalia played. Ken estimated the crowd at 70-80. Other CF members in attendance included David Martin and Dan Draney.
Trisha's "#2 sister" Dolores opened by explaining that the service was to be unstructured (in the Quaker tradition, I guess) - anyone could approach the mike and share whatever he/she felt like about Trisha and what she meant to him/her. Dolores went on to thank several groups of people for their support over the past 12 years: the doctors/nurses, law school friends, members of the firm where Trisha worked, fellow sailing enthusiasts. Special thanks went to the members of the Cancer Forum and the Cancer Care support group, "who knew what it was like to be Trish."
The presentations that followed were a fascinating mix of stories, songs, poems, and thoughts that showed the many facets of Trisha: Her energy (even in the face of what she endured), determination, and love of people. Her doctor spoke of Trisha's courage to try new, experimental treatments - whether or not they would help her - in hopes they would help others. Several spoke of Trisha's last days and how she managed to end her life "her way" - at home, surrounded by family.
I attempted to speak for those of us here on the Forum "who've been crying at their keyboards (as I'm doing as I write this)" and included a brief description of the NY luncheon she arranged last spring - my only meeting with her.
Finally, Trisha's father closed the proceedings by sharing the only two complaints he'd heard from Trish during all her battles: "It's not fun" and "It's boring." He finished by quoting Edna St. Vincent Millay's words: "We are not resigned." The piper played "Amazing Grace" and we adjourned for coffee and cookies.
All in all, an evening that many feared would be forboding turned into a celebration of Trisha's life - and of life itself. I suppose that's how Trisha would've wanted it.
One thing I've learned from this experience is the importance of maintaining a sense of humor in spite of all that's going on. Norman Cousins, in his book Anatomy Of An Illness, described how comedy - notably watching old Marx Brothers movies - helped him cope with his own illness. Laughter is truly the best medicine!
Sometimes, though, a little gallows humor which only makes sense to "those in the know" can also do the trick. The following was posted to the Cancer Forum in June, 1992, a few weeks before I was to undergo Lung Surgery Number 2 (Reprinted without permisson):
THE 10 LEAST LIKELY ACTIVITIES FOR THE NIGHT BEFOR ENTERING THE HOSPITAL TO HAVE A LUNG REMOVED
- LEAST LIKELY SONGS TO LISTEN TO: "I'll Probably Feel A Whole Lot Better When You're Gone" and "Aqualung" (tie)
- LEAST LIKELY SPORT TO VOW TO FINALLY LEARN WHEN ALL THIS IS OVER: Pearl Diving
- LEAST LIKELY MOVIE TO RENT FROM THE VIDEO STORE: Breathless
- LEAST LIKELY ROCK GROUP FAN CLUB TO JOIN: Air Supply
- LEAST LIKELY THING TO BUY TO PLAY WITH THE KIDS DURING CONVALESCENCE: An enormous inflatable pool toy
- LEAST LIKELY THING TO SAY TO ONE'S WIFE AT A FANCY GOODBYE DINNER: "That dress takes my breath away."
- LEAST LIKELY NON-FICTION BOOK TO TAKE OUT OF THE LIBRARY: "Where's The Rest Of Me" by Ronald Reagan (Note: also appears on least-likely list for those not entering the hospital at all)
- LEAST LIKELY SHORT STORY COLLECTION TO TAKE OUT OF THE LIBRARY: "Emperor of the Air" by Ethan Canin
- LEAST LIKELY POEM TO RECITE OUT LOUD: "Ode to the West Wind" by Percy Shelley
- LEAST LIKELY ECONOMIC PROBLEM TO BE CONCERNED ABOUT: Inflation
And In The End...
It's hard to believe I really have to come "the end" - but only for now.
This has been a most interesting experience, to say the least. At the beginning of this saga, I called this "resurrecting and recollecting" process "not only physically taxing, but also emotionally draining." And that was indeed the case - initially. I discovered that I needed frequent breaks - and lots of tissues at hand - as I re-read postings I hadn't seen in several years.
In retrospect, this emotional experience has actually been quite fascinating - for both Ken and me. For one thing, this is probably the first time my husband has seriously critiqued my writing - a role reversal of sorts. (Most folks who see both our names attached to internet postings know who's the hacker and who's the writer!) More importantly, it has been a stellar opportunity for both of us to reflect on a significant period in our lives - and learn from it; as individuals and as a couple. And, we'll no doubt continue to learn...