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Thu 17 Jun, 2004 11:30 am
Hi All Y'all,
Should I start this, My name is Sam and I survived cancer. Naw, way to twelve step, as if you can cure cancer by talking about it. How about, Sam 1 cancer 0,?
I learned about cancer early in life. One of my favorite neighbors, Harriet, had cancer of the spine. Back then in the late 50s Dr's were paranoid about prescribed morphine addiction. She had to tough it out on steroids of all things and nonaddictive pain meds.
The poor dear grew facial hair which embarrassed her greatly. For some reason she knew that I would not see the whiskers, only her. So I was the one she would allow to visit with her for hours on end. We talked about everything. It seemed to help her ignore the pain.
To me she will always be the gracious, charming Lady next door.
In the early 90s I had an iffy pap smear. I should have had additional smears every 6 months, but my job intervened. AT&T closed the office in Minneapolis and I transferred to San Antonio, Texas. What with moving, getting settled and working scads of over time, my medical concerns were forgotten.
Then, in January 96, my Mom's best friend called me. Bill told me that Mom was really sick but would not go to the Dr. I made several phone calls to her Dr. and my, now, ex-husband. That evening my ex took her to the ER. They diagnosed an upper-respiratory infection and prescribed antibiotics.
One week later, her condition had not improved. Another trip to the hospital. This time they admitted her and found that she had advanced lung cancer. More calls back and forth to work out where she would stay and what treatment she wanted to have. In the end she went home, on oxygen, and declined any treatment.
I packed up my life, took family leave and drove the 1200 miles home. When I walked into her room, at 2:00 A.M. the first thing she said was, "When can I die?" Two weeks later at 8:30 P.M. on March 11, 1996 my Mom stoped breathing. It was a relief for both of us.
Well I stayed in St Paul, quit AT&T, dealt with her estate, got another job and got on with life. The I went to urgent care for something or other and the Dr. asked when was my last pap smear. "About 3 or 4 years ago." I responded. "Let's do one now."
When a Dr. looks at one's internal reproductive organs and says, "I don't like that." You know exactly what's wrong. When you arrive 30 minutes early for an appointment and they will see you immediately, you know you were right. One week later I had a radical hysterectomy and got lucky. No radiation, no chemo, the cancer had not spread. I have been cancer free for seven years!
Sam 1, cancer 0.
The docs used to call my husband and me "the throat cancer twins." Here's our story...
In 1993, after years of trying to have a child and many "inconvenient side effects" (love those words, Noddy!), I finally achieved a good pregnancy. This was against the odds for us...we'd been told several years before that we had less than a 5% chance. We were absolutely ecstatic.
Then, in December my husband noticed the glands on one side of his throat were swollen. Anxious that he might give something to me that would complicate the pregnancy, he went to the doctor immediately for antibiotics. After two rounds of antibiotics, the swelling was still there. No pain or discomfort, just swelling. So he was sent to an ENT who assured him that it was likely a cyst...they are very common in that location. Because it appeared to have grown very fast, they suggested removing it in case it got any larger. (It could eventually have interfered with swallowing, they said.) So he was scheduled for a simple 45-minute outpatient procedure to remove the "cyst." This was in late January, 1994.
After 2-1/2 hours in the operating room (!) during which I was becoming increasingly anxious, a whole team of doctors came out to see me in the waiting room with ashen faces. "We've got trouble," they said. "It isn't a cyst. It's a malignant tumor. Removing it is possible, but it will involve a very difficult, disfiguring surgery. We're going to fly in a specialist."
They told me my husband had a 50/50 chance of living for three years. I told them I wanted to tell him about it myself when he woke.
Meanwhile, I paced the hospital corridors alone practicing my Lamaze breathing. I was 8 months pregnant. In less than 5 minutes, I went from the highest high of my life to the lowest low. The entire next two years would be a roller coaster ride.
My husband had Stage 3 tonsillar cancer. What they had assumed was a cyst was in fact a fast-growing tumor that started on a tonsil and spread to a lymph node next to it. He underwent what is called a "radical neck" surgery. They removed the tonsil, all the lymph nodes on that side of his neck, much of the muscle on that side of the neck, the jugular vein (! - didn't know they could DO that!), and the large nerve that goes from under the ear, through the tumor site, and into the top of that shoulder. We held our breath until the lab results came back. Whew! The cancer had not spread beyond the one lymph node!
This was a fairly rare cancer, especially in otherwise healthy 40-year-old white males. After several months of asking if it was smoking-related (he had smoked 2 packs/day for 25 years) and receiving only vague, noncommittal answers from all the doctors, one finally told me, "We never see this type of cancer in non-smokers." My husband had already stopped smoking instantly upon hearing the diagnosis. They told him that smoking would never again be a risk "factor" for him...it would almost certainly kill him to put those toxins right back on the site of the tumor. I told him that I believed his prognosis would be 90% determined by what he believed in his own mind. I truly believe that. He took that to heart, and he decided that this wasn't going to be what got him.
There couldn't have been a worse time for ME to go through this, but it was the best possible time for him. Because our child, our miracle baby, was coming, my husband went to the doctor immediately and then did every single thing the doctors advised him to do...and more. As long as he had waited for this, he wasn't ABOUT to miss it.
Our son was born on the second of March. My husband was still too weak from the surgery to make it all the way through my labor, so we asked our Lamaze coach to be a partner, too. Everything went perfectly. Our son was 10 lbs., 1 oz., and Dad was there for everything, as he has been ever since. He was off work for medical reasons for the first few months of our son's life, so they've always been close. I've never seen a better father.
When our son was 3 months old, he started a painful and aggressive course of radiation therapy. He has always been thin...6'2", 175-180 lbs., but his weight plummeted to 140, and it was obvious that he was ill. It took him two years to put the weight back on. The radiation therapy to the throat (both sides, just to be sure) fried his saliva glands, so he will have dry mouth from now on. (He always carries a water bottle.) The nerve into the shoulder that was surgically removed happens to be the same nerve that serves the large trapezius muscle, which atrophied without nerve support. This was painful, but expected. He has since had follow-up surgeries on his shoulder to restore movement, which have helped, but he will have to deal with chronic pain for the rest of his life. Pain management is a fact of life for him/us now. But at least he's ALIVE!
So, now it's October 1994. He has completed the radiation therapy but is still very ill. I have exhausted myself caring for him and our huge new baby, who I breastfed. (Did I mention that I was 39 when he was born? It's harder for older mothers...particularly older mothers with bad backs and very large babies.) During one of the baby's checkups, the doctors noticed a large lump on the front of my throat. I dismissed it, saying the baby always grabbed me there when I carried him. I have always been the type who swelled up if you grab me.
But the doctor said no, that was the thyroid. Thyroid growths (goiters) are extremely common in the first year following pregnancy. The same hormones that are at work in pregnancy also promote thyroid growths. However, he said, it was nothing to worry about...99% of them are benign. He thought we should remove that half of the thyroid that was completely taken up by the growth to keep it from getting any larger. So I agreed.
I had the surgery and went home. Four days later, the lab reports came back with an unexpected "incidental finding." Thyroid cancer. Microscopic, but there. After the doctor explained that this type of cancer is almost always found in both sides of the thyroid, I VERY RELUCTANTLY agreed to a second surgery to remove the remaining half. This meant that I would have to be on replacement thyroid hormone from now on. And I'd have to stop breastfeeding my baby, because they give you radioactive iodine after the surgery to kill any remaining thyroid cells. But it turned out to be the right decision, because there were cancer cells in the other side, too.
I learned that if you have to have cancer, I had the type you want to get. It's 99.9% curable if caught in the early stages. It only originates in thyroid cells, and with radioactive iodine, they can eliminate every single thyroid cell in your body. Then there is no chance of recurrence. End of story. My surgeries & treatment were no piece of cake, but they seemed very simple compared to what my husband had gone through.
I was diagnosed with cancer exactly one year after my husband had been. The doctors thought that was an amazing coincidence. But it made sense to me. My husband's cancer was caused by smoking. And I had been under entirely too much physical and emotional stress NOT to come down with something.
Anyway, here we are, about ten years later, and we're both free and clear. And we have a great son. Life is good.
On cancer surviving, I know I have made a few posts re ca (the med abbreviaton) here, off and on, but I have been fairly reticent except for one post I can't find.
Maybe I just saved it and didn't actually post. I wasn't in a breast cancer thread, just in one of our friendly chat places. And the moderators know, but that was a different post than the one I am talking about, which was more recent.
I didn't, originally, want to be known here as cancer survival queen, the first thing anyone thought of when they saw Pacco, my avatar.
Since I have made a lot of noise recently about my damn eyes this is now moot.
Anyway, my story is moderately dramatic as I got breast cancer on 911 - so to speak, if not factually.
I am thinking, to save myself some angst and typing, let me go and dig up some old write ups, and then I'll come back and comment in real time.
Here's part one. There are four parts, and I'll keep editing this til I get all four in place. This was all written in early 2002. I'll try hard not to correct the text.
PART ONE
I went down to LA last September to go the accountant (late again on filing, had to file by midOct.) and my good old mds. Went to the gyno on Monday morning and the radiologist on Monday afternoon for my usual mammogram, and they saw two little calcifications, which hadn't been on the last year's film. So they held me back and the radiologist then did an ultrasound, telling me afterwards that it was probably nothing but I would be wise to have a needle biopsy, either at UCLA or St. John's, UCLA possibly very slightly better.
My first job at sixteen thru 21 was at St. John's. Went to UCLA, worked there as lab tech for years, studied land arch there, go there for my eyes.
Which?
I was staying at an old neighbor's, a guy's house this time, as I try not to wear out friends with repeated visits. All bundled up in the guest room, I awoke to hear the phone ringing, his barking what, what, and then running around with his head cut off and finally knocking on my door...you gotta see this, wake up, a plane.....
So we watched in his den, what all the world, or a lot of the world, was watching, until I had to go..because I just had to arrange a biopsy fast, my plane would leave on Saturday the 15th and this was Tuesday, Sept. 11th.
I didn't know about medical care in Eureka, but it is a relatively small place, and I do know some about UCLA/St. John's.
So, I drove to my gynecologist's to talk with him. He is sort of a friend after all this time. I told his front desk and they put me in his office and he came in with the report in his hand and said he too thought it was probably nothing but I really should have the needle biopsy that the radiologist advised, and then we discussed which hospital. Background here is that I worked as a lab tech for years at UCLA, and my very first job at age 16 was at St. John's, and further, St. John's was only 10 blocks away. Plus, were prudent providers for Blue Cross. But UCLA might be slightly better. On the other hand, the Federal building is right near and it might be blockaded. Dr. Parker had friends in the Towers...he was a controlled wreck, and so was I.
So I drove to St. John's, parking about six blocks further east. (I rarely do parking garages because of my slow adaptation from sunlight to dark).
Went to the breast center. Asked for an appointment at the desk. They said I had to call. I said what? They said I had to call. I said can I use your phone? They passed me the phone. I called. The woman said they were booked up for the next two and a half weeks. I said I had to get in, my doctors were in Los Angeles, I live in Eureka, a small town, I have a flight back on Saturday, I have to be seen. No, ma'am, we are booked completely until Sept (I forget the date), and I said, no no, I have to be seen, may I speak with your supervisor. Well, all right.
Supervisor came out about twenty minutes later, and I ran through my story again, and she shook her head no a few times, but said to sit and she would see.
I sat, no tv there in the bc center of calm decor. Had passed a huge screen in the lobby with crowd around it....
So more time goes by and she comes out and says they can possibly do a biopsy if I have the films. I said I can get them, they are ten blocks away at the radiologists. Well, go get them, and we'll see. So, I didn't go back to the car, but walked ran over to 10th street, asked for the films, waited while they got them, walked ran back to St. John's, waited another forty five minutes and they said they could take me.
PART TWO
So, here we are, I am being ushered in. A short middle aged quite nice woman gave me a gown, which I donned, took me into a small room and hoisted my films up on the light boxes. Sat me down and told me what they do. She looked at the films, trying to figure out what was the site for the biopsy. Seems they had the report faxed, but not given me the Previous Mammograms, so it was hard to see where the changes were. She showed me what she thought, and I pointed to another little fuzz and she said no. Then we got me all situated on the table from hell, from which the boob hangs free and is approached with medical paraphenalia from below. After I was situated so that the locus was focusable by stereotactic filming, she called in the radiologist, who was in concordance with her choice of site, and then they went ahead. Perhaps I won't go into more detail. The hard part was not the needle business, because there is a modicum of anaesthesia, but instead was the not moving, and not moving took a long time because, since I had bulled my way into the shop, he had to be three other places and there were a few wait periods. That turned out to be the hardest part of the whole thing, of that day and the months to follow.
What'd I do afterwards? I watched tv in the hospital lobby with a lot of other people and then went to Bob's house. We talked about the latest with the Towers and the Pentagon, and I fit in that I had had a biopsy and he said, oh, yeah? I have this little thing on my bald spot here, they are watching it. And whattaya think about, well..more talk, reasonably, on the events of the day. He used to work for the FAA and was in touch with other retirees...
He had already eaten, not knowing when I would show up. I went over to Gelson's, my old market, and got a steak, a potato, some green beans.
Went back and raided his liquor cabinet, found an old bottle of Glenlivet and opened it over about fifteen ice cubes.
Went up to my room and phoned a few friends. Sue, who I had called the day before, was waiting to hear, and told me it would be nothing, everything would be fine.
The next day I went shopping.
PART THREE
I am not quite in the mood for this, but I don't want to let the tale go.
The day after the Stereotactic Biopsy was a Wednesday, 9/12. I met my ex, John, at the Rose Cafe around 8:30, and we talked a lot, first of all yesterday was awful in so many ways. He left, with hug, I am surprised, always now, by my distance from him and connection, at the same time.
I waited for Alexis, a friend, colleague, old workmate. Had another latte. We caught up, and after an hour or so, she left for work and I left for my list of things to do in LA...usually fun, but motions, just motions. here.
On the way out of the parking lot, I saw Bob, electrician/writer/friend, and we talked at length about Sept 11th, he said he might be going through Eureka on his way to Portland to see his daughter...I was perfectly welcoming, no difficult news on my face, besides, I didn't know much yet.
Went to the Salvation Army land of plenty on Eleventh in Santa Monica; had been there on Monday between the Gynecologist and the Mammogram, and
now hit it again. It's big, about a half of a long block. And Borget Bros building materials covers the other half. I had gotten to love the SA before I moved. They always act as if they had seen me yesterday. Well, it is comforting to me. More than Nordstrom's..
Then I went to Hennessey and Ingalls Art and Architecture Book Store and picked up a book I ordered for an architect up here. Went to Bay Cities International Grocery and got, first of all, a nice meatball sandwich, small (which is large), and some other items, I remember in particular some Sardinian pecorino...this place is also comfort, but I am weird.
Motions.
Went to Savon and got wrapping for the book, went to the Marina del Rey Post Office to mail it, and was filling out forms, when I heard someone scream, Stop that woman!!!!!
Turned out to be Eartha, our old Mailwoman. Geez, she recognized me from the back.
Went 'home' to Bob's, got updates on New York et al and called people. I think I made dinner, probably a risotto. I haven't explained that Bob was remodelling an upstairs bathroom...Well, that's how we got to be friends, he had been on a Neighborhood Land Use committee I was facilitator for, and more important, he was always remodelling something. (No, this isn't a romance.)
Went to bed early and tried to read. Called my cousin, who also is friend. I had seen her on Sunday, the day before the day before. And filled her in.
And then it was Thursday, maybe the pathology results are in...
Called the Gynecologist's office at 9 am (headquarters, sort of), and no.
Went to see Nancy G. I had called her before so she knew I was in a waiting state. She took me over to Massimo's Delectables, a new bakery in the neighborhood since I left, and we got a selection of six, count'em six, incredible pastries, went back to her place and she and her husband and I scarfed our way through them. [edit to say her husband, a fine artist, has since died, so this is piquant plus to post here now.]
Well, I could still eat.
Back to Bob's, tried to use his computer. No can do, the computer is abysmally slow, and he talks constantly, to me and to the TV in the same room. Gave up on that.
Called the Gyno, still no results.
Called Pathology at St. John's, now about 5 pm, got a staff person who said they were read, the pathologist was writing his report.
Bob took me out to Chez Jay's, kind of an old haunt of many, in Santa Monica. Not my old haunt, but one of my friends had a short fling with Jay, back in, what, '72. I remember he had a Rolls. I tried not to mention this to Bob, or in fact Jay, who I was introduced to, for the second time in thirty years. Succeeded in not mentioning it.
Tried to read. Slept.
And then it was Friday.
PART FOUR
Sept 10 - 16th, what a week.
Time for me to write up the end of that week, so I have, as they say, a
sense of closure. We left it on a Thursday night, September 13th, with
my still not knowing the needle biopsy results, and due to fly home on
Saturday.
I knew the report should be at the gynecologist's office, so I took
myself up there around 9 a.m., after my obligatory Rose Cafe stop.
Walked in and they brought me in to Dr. Parker's office, again.
He and I looked at the pathology report, which was a heart
stopper. Clear normal breast tissue in 13 of the 14 needle plugs, and
invasive carcinoma in the fourteenth, which showed a small clump of
invasive ca attached to a small blood clot. The
report stated that this could be an artifact (that is, from the lab or
procedure and not from my breast) and also could be invasive carcinoma.
Let me add here that I think the reason there were fourteen plugs was
that there was that tad of doubt about the location of the two
"calcifications" on the original mammogram.
I don't think they usually do that high a number of plugs.
Dr. Parker and I talked about what to do, did I want to be seen in town,
where I no longer lived but have friends, and know the hospitals - he
gave me names of key surgeons - or in San Francisco, where he
didn't know them but told me how to find out - he said talk to the
nurses in the breast cancer centers at UCSF and Stanford!!! Or at home,
where I didn't know the medical facilities, but was pretty
doubtful...except that my friend Sue knows a woman who is presently
running for political office who had had a bout of breast ca and raved about
her doctor.
So we left it that I would let him know, and we hugged.
I walked out and put another quarter in the meter by my car and sat
there. I don't remember crying. No, I didn't. I was just thinking, I
had to be at lunch at Linda's around noon and it was now around 10. The
car phone rang, and it was a friend from San Diego, and I told her..it
helped to just recite the week. More than she expected on that phone
call, she was just calling to say hi. Then I called Sue up in Eureka
and she said, "we'll get through it! don't worry, we'll get through
it." And she called the other woman who she knew in Eureka and got the
doctor's name and called me back. I put in some more quarters. I
called Linda and asked if the lunch was still on, oh yes,come on over
any time, and I told her, briefly, and said I was going to go get the
xrays first, I was sure I would need them.
Which is what I did, first to St. John's breast center, where they said
they were down in radiology's main files, and then down there where they
said they were up at the breast center and then down and then up...where
they were finally found on the front desk...at one point, the tech who
assisted at the biopsy reached in her pocket and handed me a silver
angel...
and then to the radiologist's ten blocks away, where I got the package
of all previous mammograms.
And drove to Linda's. Pretty place she lives, in a lovely house - a
house I've always loved to visit, bright white, a lot of glass,
delicious art - which overlooks the Pacific. It was a sunny day, and my
heart was still in my throat, but a little less so. I got there, and
she hugged me, sat me down at her kitchen counter and said what do you
have to do first?
I said I need to find this doctor in Eureka, and so I called her and
paged her. And then what do you need to do? I need to find out if my
plane will be flying tomorrow...so Linda took me downstairs to her
computer and found United's site (I was a little shaky) and found it was
cancelled.
Dr. Mahoney returned her page, she had been driving through the forest
on the way to the SF Bay area, and had just then gotten her messages.
She would be glad to see me on Monday. I liked her right away, I could
tell she was a straightforward dirtbag woman. So, I would at least see
her before deciding where to be treated.
So then we knew I needed to change my car reservation..which I did, not
returning it but reserving it so I could drive home the next two days
(it always takes me two).
By then Linda's sister Marina came for the lunch, and Linda had warned
her earlier - Marina is a dear friend too, who herself has survived
colon cancer, almost ten years now.
We talked and talked, with me sitting at the end of the table so I had a
great sparkling ocean view. I think I even had some Pinot
Grigio...Linda served the chinese chicken salad, and eventually it was
time to go, so I could go to the car rental place. And Marina said, be
sure to get the pathology slides!
Ay yi yi, back to St. John's and down to pathology, where they had to
hunt around and came back and said they would fed ex them to Dr.
Mahoney. And the lab tech said she loved my purse..
To the car rental place through Friday afternoon traffic, weird to not
just tell the guy, and then back to Bob's, where...I would be going out
to dinner with my niece and her father, John's brother.
Told Bob, and he told me some more about the little thing on his scalp,
adding more about his sister who had this stuff and was fine now.
I went upstairs and called Bonnie, who lives in Woodside, to see
if I could stop there on my drive back. They wouldn't be there but I
could stay, the inside garage door would be left open. And tell me
more....which I did.
The dinner was strange. I am very close to my niece, who was just
turning fourteen and she and I desperately needed to talk about this,
but Jim had brought along his girlfriend, and it was a family meal,
strained, as there is big tension between Tenneh and Yolanda. I told
Tenneh on the way to the car, and we talked about a minute alone as they
were dropping me off. Aaarrrggh.
Let's say I emphasized how fine I would be.
Up on Saturday at six and a quick hug to Bob, and a stop at, no, I
didn't, yes, I did, Starbuck's, it was open at seven and in the right
place.
Drove up through Malibu and started crying. Eventually I put on some
tapes I had bought, geez, Verdi. And some more of Zucchero, an italian
pop singer. The ride was good for me. I did
cry off and on for two days. The weather was beautiful, and I didn't go
as fast as I sometimes do. I did stay at Bonnie and Lee's, and was
greeted as I came in the drive by Bob the Cat, which was touching. Went
over to Robert's of Woodside and got a big slice of parmigiano, a rib
eye steak, a bottle of Rosemount Shiraz to leave for them, and one for
me, and a bunch of lettuce. Made myself a little feast, and read
Newsweeks in their living room.
Off again the next morning, going through San Francisco and across the
Golden Gate early, not crying again until I got to the forest. Even
stopped in Healdsburg at Oakville Grocery, sandwich to go..plus a bit of
chocolate...
Got to Sue and Walter's and when they heard the car, they both came out,
with Pacco at their feet, and we all hugged and cried.
Well, maybe not Walter, but he was at least sad, and Pacco, he was
jumping up and down. That was one of the hardest parts of the horrible
week, 911 and breast cancer, and no Pacco by my side.
Saw Mahoney on Monday, had lumpectomy on Tuesday. She is no slouch, and
I'm not either.
Things have been looking up since then.
note - 4/19/04 - I am still happy but wondering why I keep getting thwapped. I have developed a perverse humor along with my sense of survival.
Give 'em hell, y'all.
) I have been in complete remission.
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