history, continued ...

January 29

From Maureen...

HOORAY!!

We got the news yesterday: Mary's CT scan done on January 24 came back entirely clear!!!

Whew, now that we've gotten our breath back...

What this means is that, since Mary's successful surgery on September 18 and after these months of chemotherapy and radiation to catch any remote cancer cells, there are no new tumors or any evidence of spread of the cancer.

Also, the blood-marker test which is sometimes used to follow the progress of pancreatic cancer treatment is normal for Mary. A good "CA19-9" result is under 37; Mary's is 13.

It's a lot to take in, after so much waiting and hoping, but it certainly fits Mary's own strong sense that she's feeling well and "we've got this cancer on the run".

She will finish out the full chemotherapy treatment, three months of gemcitabine (3 weeks on - one week off) through April, 2002, to (as her doctors say) eradicate any residual remote cancer cells. Sheez, it's a weird feeling for Mary to be getting "sick" again just as we've heard how well she is!

Many thanks to all of you that have been supporting us so much through all of this. You've been there for the hard parts, and it means everything to be able to share the really good stuff, too.

---

January 16

I am in the recuperative period after radiation/chemo, gaining strength, hope and momentum each and every day. Maureen and I and our dogs, Benny and Melba, took a wonderful overnight retreat to Santa Cruz/Capitola via Half Moon Bay this past weekend.

The Sun God/dess was working overtime on Friday January 11, which afforded us a gloriously warm, bright outing at one of our favorite people-and-doggies spots, the northern edge of Half Moon Bay/Pillar Point. Benny and Melba romped and swam and played fetch-the-ball and send-it-down madly, while Maureen climbed up to watch the super-surfers braving 15- to 20-foot waves at Mavericks, and I got 1/3 of the way up the hill, too slippery for me, and enjoyed a terrific lemonade with my egg salad sandwich and chips on the seawall.

It is tremendous to be nausea-free and regaining some appetite for food.

Saturday a.m. we swam (in a heated pool!) and sat in a hot tub.

By Saturday afternoon, the outside temperature returned to the wintry norm and we returned home, refreshed and delighted to have two peaceful and normal days together.

Ahhhhh!

---

January 6

Hallelujah! On Friday Jan. 4th I completed six weeks of the powerful simultaneous duo, chemotherapy and radiation. Super-Whew!

I am particularly grateful to all of the fine and caring professionals of the radiation oncology facilities at UCSF Mt. Zion, and I am grateful to be done seeing them in those professional capacities, hopefully for the rest of my lifetime. I also feel appreciative of every other woman in the women's dressing/waiting area during radiation, for, in all of our different lives, languages and states of being, we encouraged each other:

Special good wishes of health to Julie D., Mavis C., Shawna, Rita, Berta, Rosella, Lily, Kathy, Patrice, Annette and every other brave soul—women and men (and children!)—who walked or walk there.

The course was rough, no question, and I remain somewhat depleted. Often I felt too tired to read, write, think or move, and too weak to do much of anything. The nausea was made bearable by a wonder-drug, orally disintegrating Zofran tablets, but there were times I would honestly rather just throw up, and a couple of times that I did.

I know and deeply appreciate that I suffered much less, at least physically, than many people do during this intensive phase of treatment. Emotionally, it's more difficult to compare.

Over the past couple of weeks, I've been pursuing good answers to a spiritual question: What is the source of strength when a person has already been through an awful lot that's very hard? How does she or he go on, beyond the one misfortune or catastrophe too many, the straw that broke the camel's back, the imbalancing point, the "final straw"? I don't much like the model of "what doesn't kill you makes you stronger", because we live in a world fraught with the terrible exceptions to this rule, of those who seem killed as well as stronger, unhealed survivors, so compelled by the forces of bitter outrage or barely reconciled self-shrinkage. What doesn't kill us may or may not strengthen us, in my experience.

I was reminded of the best beginning of an answer on New Year's Eve day, sitting with seven dear friends in a circle of cushions and futons, at the Zephyr cafe on Balboa. It was our New Year's bonfire, which we held indoors this time, due to the high tide, damp ocean beach, drizzly weather and my delicate condition (thanks, everyone!), completed by us putting messages on paper and burning them in a small cauldron outdoors afterward. Various combinations of us have done a bonfire for about 12 years now, sitting and talking and singing and playing and identifying things to be attended to, and in some cases to be let go of, at the end of one year and the start of another: disappointments, shocks, griefs, grievances, and what needs honoring and celebrating, achievements and triumphs and pleasures and thrills. A good friend mentioned that, given everything each of us has lived through, we are all miracles.

I agree. So, for 2002 and onward, my start of an answer to the "final straw", the imbalancing point, and "my burdens are too great to carry", is that every last damned blasted nasty crusty tough thing I've ever been through just becomes part of my strength, right alongside all the good stuff, joy lying beside grief, pain right next to pleasure and relief.

So ... I got through the chemo-radiation, and am bearing the "after-effects" well, for a bundle of reasons and causes, wrapped in luck and Faith and strength and self-kindness and acupuncture and Chinese herbs and couples' counseling and love, including yours, kind readers all. Hooray!

I'll be spending the next three weeks, till chemotherapy recommences on 1/31/02, gathering up all that complex, commingled strength, resting, mending, kissing Maureen and the dogs, feeling both the Faith and the luck, sending out love and good wishes to each of you who is listening and caring.

Meanwhile, praise be: I feel the worst is over.

---

December 26, 2001

from Maureen ...

Season's greetings from Mary and me!

Mary's doing amazingly well, given that she's in the hardest part of her course of chemo-radiation. There's been barely a break in the radiation appointments, and the oral chemo's particularly hard on Mary's stomach, but despite all that we've had some really nice holiday time with family and friends.

Actually, one of the hardest parts right now is the waiting, and the counting. Counting down to the end of radiation (January 4), when Mary gets a three-week break. Counting the pounds: Mary's lost a lot of weight since her surgery, and sometimes it's a real challenge to whet her appetite. Counting the tablets and food ingredients and herb doses and medical appointments. Counting the months that Mary wasn't supposed to survive, and counting on beating that. We've already begun to tremble a little at the thought of the January CT scan, which should show that the combination of surgery, radiation and chemotherapy has arrested and eradicated Mary's cancer, and it's hard to wait for that. Meanwhile we're visualizing her healthy liver, lungs, pancreas and other organs, sparkling clean and free of tumor cells. It becomes so important to appreciate each day, and how we're being loved and cared for, and not spend all the time counting and waiting.

So, at the close of this year -- which has been so hard for us and so many people we know -- my gratitude goes out from the two of us to the many friends and others who've helped us these past three months.

Thank you!! to the friends and allies who...

...brought us food
...sent us loving messages by phone and mail and by this website
...cleaned our house
...read us poetry over the phone
...gave us hugs
...sent us flowers
...lent us their special healing objects
...listened to our stories, every time we needed to re-tell them
...gave us funny books and movies
...gave us books about healing (Rachel Remen's "Kitchen Table Wisdom" is wonderful)
...donated sick/vacation days to Mary through the San Francisco Catastrophic Sick Leave Program (her donation number is # 000857)
...took our two (highly energetic!) dogs out for long and happy runs
...lit candles for us and prayed in all their ways for us
...played Scrabble and Cranium with us and reminded us of all the ways that life is still normal.

Thank you!!

P.S. Oh, and poetry gets us through. Here are some excerpts from Mary Oliver's latest long poem, "The Leaf and the Cloud".

---

December 16

This has been a tough week (I debated over calling it "challenging", and settled on "tough" as more truthful), with some bright bright spots helping me through it.

It started out with the portable (i.e., fanny-packable) chemo pump delivery system malfunctioning, stopping in the middle of the night (Monday at 1:49 am to be exact), for the second week in a row. Maureen was obliged to salinize and heparinize the IV line to prevent me from risking a potentially lethal blood clot; of course, she did it with utter skill and tenderness, and blessedly I trusted her, but these developments crossed big, big boundaries.

So on Monday morning, the UC / Mt. Zion team, whose care has been impressive, compassionate and expert so far, came through again, and removed the IV line ("PIC", or peripherally inserted catheter, which went from my arm up into a large vein under my collarbone) and the pump, at my request, and I began oral chemo by tablets instead. The company that maintains (or doesn't maintain) and markets this equipment will be getting its sharp earful of a letter sometime soon, most of all because we want them to know that they must treat the next person better, or lose their contract.

Meanwhile, oral chemo has proved to be pretty hard on my digestion, and I've had some serious nausea, as well as exhaustion and depression, though at this point -- halfway through abdominal radiation, with three weeks to go -- it's but one factor.

The bright bright spots included a wonderful visit to my workplace, the OCC, where I saw my dear co-workers, shared some holiday festivities, and received a great gift, a terrific San Francisco Fire Dept. baseball cap. I have decorated it with my cherished "IABFF" (International Association of Black Firefighters) pin, which I was given during my several years of joyful service to the San Francisco Black Firefighters Association as a member of the legal team that successfully litigated to racially integrate and de-sexegrate SFFD. I love my new cap, and I love that OCC staff!

Also, Maureen and I went to a really beautiful holiday party at the home and amidst the family of one of my most important healers. Today I enjoyed a nice dogwalk at Pine Lake Park, with breakfast out afterward. (No, the dogs ate at home!) And Maureen's hugs get me through.

I was and am thankful for the energy and bodily equilibrium to be able to do these things, and for all the love and care that came to me this week. Thank you!

December 8

This concludes Week #2 of my surviving the Double Whammy, pack-my-own chemo pumping away and radiation dates Monday through Friday. I'm honestly rather exhausted right now, but feeling proud of having gotten through 1/3 of the radiation as of Thursday.

I also am having an awareness about this time in my life that's beginning to be helpful, namely, that these months of cancer treatment are not likely to be the same ones in which I write the Great North American Novel, scale Mt. McKinley, or even manage to log miles of dogwalking and hundreds of bird-spottings for the Cornell Lab of Ornithology backyard bird count. Much more probably, I will give my all to the #1 priority of getting well and beating cancer.

And that will be okay.

P.S. For those who've not yet gotten to see the Harry Potter movie -- it's a delight! My sister Helen, Maureen and I and our best friend Barbara saw it together a couple weeks ago, and had such fun. I even passed out jellybeans ("Bertie Botts' Every Flavor Beans") in the long waiting line before the film, to get into the spirit. No, none were grass-, earwax- or even slime-flavored; even so, most of the adults were righteously suspicious. Free candy from a balding crone? Those brave enough munched tangerine, lime, coconut and rootbeer jelly beans, and I smiled.

December 1

One week of pack-my-own chemo and go-to-radiation-daily is down, and I have five more to go. Whew. Whew! Whew! The chemo instructions warn the patient against cutting, burning or bruising oneself -- (to lower risk of infection, of course) -- while the treatments themselves cut, burn and threaten to bruise.

The great challenge for me this week was not to get too discouraged! I managed to heal significantly from a major abdominal surgery and to survive a month of traditional, non-portable chemo. This week, after the installation of an IV line (minor surgery, by any other name) and the first five radiation appointments, I felt wounded all over again.

And the greatest challenge about feelings, I find, is to have them -- each and every one, nothing off limits -- but not move into any one feeling and plan to live there. Writing to you all now, I feel better, strengthened, and with my sense of humor intact. Ho ho ho!

Want to check out a photo of me and Maureen over Thanksgiving?

November 21

Despite our good intentions to keep you all posted much sooner about Mary's progress, the weeks just got away from us. Here's an update, with wishes for a good holiday.

From Mary ...

Hi, everyone! Well, I got through "Round One" of chemotherapy over the past several weeks, with minimal suffering. Yes, "chemo sucks", and, yes, I'm getting a shorter-than-ever haircut today. Thankfully, chemotherapy has proved bearable for me so far. I have several more rounds of chemo to go, between 11/26/01 and 5/02/01, plus daily radiation Monday - Friday over the next six weeks, so I will be hoping and praying for continuing strength, courage and sense of humor to march through it all.

Please know: your every good thought, wish and/or prayer helps me heal. Emails and other missives welcome, and check this webpage intermittently (i.e., every couple of weeks, thanks to my sweetheart Maureen) for news of my progress and adventure in getting well / modern medical care.

Take care and Happy Holidays!
I daresay also: Peace.
Mary D.

November 5

Here's some information on the next phase of treatment for Mary that began on October 25.

Mary has enrolled in a clinical trial for people with pancreatic cancer who (1) have had their tumor surgically removed ("a potentially curative resection") and (2) show no spread of the cancer to other organs ("no metastases"). The trial is studying two different courses of chemotherapy, interrupted in the middle by a combination of chemotherapy and radiation.

The clinical trial is in "Phase III", meaning that the drug regimens have already been tested for safety and efficacy, and are now being compared. Of the two arms of the study, Mary was pleased to get into the one that uses a newer drug (gemcitabine or "Gemzar") with generally fewer miserable side effects than the older drug (fluorouracil or "5FU") used in the other arm of the study. During December and January, though, Mary will be getting 5FU because patients in both arms of the study receive this drug during the radiation phase of their treament.

An aside on names: We think it's pretty amazing that pharmaceutical companies give chemotherapy drugs names like "FU". Yes, we know it's going to attack every fast-growing cell in your body, including your hair and white blood cells and stomach lining, but there's no need to rub it in!

October 29

This is just a quick note to say that Mary is doing well. She has healed nicely from her surgery, and last week started a course of chemotherapy at UC, with the support of an excellent local acupuncturist / herbalist.

October 14

From Mary at home...

Hi! and THANKS to everyone who's written, e-mailed, sent flowers, sent good will. I so appreciate each of you, and you'll be hearing from me personally as time, energy and my treatment schedule permit, over the next several months. I send out my love and gratitude to you, my family and friends.

I've been making great progress, mending from the major abdominal surgery. I haven't missed my spleen (the injustices and tragedies of our World still evoke my splenetic qualities!) and my digestive system continues to perform beautifully with a dramatically downsized pancreas (a "pancreatini", for Italian-speakers). Yesterday I walked Benny and Melba all over Ft. Funston including the beach, and wore myself out. Overdoing it is part of getting well, for me.

It looks like I'll be undergoing four to six months of chemotherapy, and some targeted radiation, between now and April '02. While I dread it all, I'm also entirely grateful that these options are feasible and available to me. I have a stronger-than-ever awareness that I am fortunate to be alive, and to have a fighting chance against this wicked pancreatic cancer. The great success of the surgery -- thank you, Dr. Jeff Norton and Drs. Dolan, Robinson and every other member of the surgical and follow-up team, and phenomenal nursing and support staff on 14 Long @ UCSF, for your superb care! -- and my post-surgery momentum give me Hope. I am fueled by love and care and patience and humor and perspective from Maureen C. Mason, our dawgs and parakeets, and every person who's helped us so much in this hard, hard time, most of all with your kind and compassionate thoughts and your generous actions.

P.S. This is for those who can stand another "political" comment these days; all others feel free to skip:

October 3

Bear with us: we are recuperating after Mary's successful surgery, and there will be more news in a few weeks. Meanwhile, feel free to continue sending her any messages you like via this website. It's been a real boost to us both--thanks!

September 25

Great news: Mary is going home tomorrow! We've been extraordinarily well-treated here at UC Medical Center, by doctors and nursing staff alike, but just can't wait to get home to our dogs Benny and Melba and a little more normal life.

We didn't get a clear result from the tests on tissues taken during the surgery: it appears that the cancer did spread to a small number of lymph nodes (out of the many that were tested) before the tumor was removed, and Mary's doctors may recommend radiation for those specific sites as a follow-up treatment. We'll be consulting about next steps with the UC Cancer Center oncologists--as well as healers from other traditions--in two weeks or so, once Mary has completely recovered from her surgery.

Mary insists on my adding:

I love you, Maureen. I so appreciate your creating this website. It has been and is such a source of grace and healing to me. I shout from the rooftops, if anyone should ever have to go through anything as hard as this, to have a person like Maureen in your life makes it both bearable and worthwhile.

Yesterday Mary farted!! All over this ward, the abdominal surgery patients wait for this big moment, which means a patient's digestion is finally awake and working again, and the nurses and other staff practically open champagne bottles over it. It took five days (some of us were getting worried, and consulting the Harry Potter books which must have a Passigassius spell in there somewhere) but now Mary's on the home stretch!

Many good things happen after the Big Fart. Because it means Mary can now swallow pills, the epidural morphine IV that numbs her torso and allows her to walk without pain (which gets the digestion going and fends off pnuemonia) will come out, and she'll be weaned over to oral painkillers. She can eat--slowly, gently--soft solid food. Once the epidural is gone, the catheter can come out (finally!), and one of the IVs. Fewer tubes, hooray!

The other good news is that her pancreas--now just the head, as the body and tail were removed with the tumor--is doing a yeowoman's job: her blood sugar levels are within normal range so she's getting the insulin she needs. The pancreas also does a lot of other work for the digestion so we wait and see if Mary will need enzymes or other care in the aftermath of the pancreatic resection. We're also still anxiously awaiting the result of the pathology slides, tissue cells taken during surgery to ensure the cancer didn't spread.

Later September 24

Everything after the Big Fart has gone better and more quickly than expected. Mary's eating, off the epidural and free of the (urinary) catheter. She had a hard time this afternoon and tonight as the doctors and nurses tried to find the right balance of oral pain meds that would work without making her naseous or too sleepy. Her spirits are excellent, and there's an--outside--chance that she might even be ready to go home tomorrow!

Mary's progress has been excellent, and we hope this website has been a way for people to feel they're with her during her hospital stay. The days have been very full, with all the drain and dressing changes and walks that take more time to prepare for (unhook from the anti-thrombosis leg stockings and squeezer machine, manuever into a sitting position and stand, rearrange IVs and tubes for rolling, get a robe on around various tubes and put on nubbly stop-slip socks) and come back from (undo all those things plus do spirometer and coughing exercises, and maybe get a sponge bath--oops, no, up again for a real water not foam shampoo--damn if we're both not ready now for a nap!) than the walks themselves ... so it may well be that Mary will be home before she can take calls or get visitors.

Meanwhile, she's really been enjoying reading the messages left at this website. Thanks!

September 23

Mary has been graduated to some clear liquids and appears to have beaten a nagging fever. Her digestive functions are not yet "on line", which is not unusual for a major abdominal surgery.

The flowers, cards, art, messages and love that have come Mary's way--along with most excellent nursing care and follow-up from her surgeon--have kept her spirits up and sped her recovery, as you can tell from a recent photo.

Her support team is already smuggling in tasty and nutritious vegetarian items for the day she can eat real food, which is not what any of us would call Hospital Jello.

We'll post here once Mary can start receiving phone calls or visitors at the hospital. Meanwhile, she has been enjoying hearing messages left at 415.239.4900 or sent from this website. Thanks!

Mary is being a great patient, doing the short walks (the "IV shuffle") and other exercises that promote healing with her usual friendliness and mental vigor. She's also been sitting up and playing the card game Netrunner with Maureen, and holding her own despite a morphine drip. The doctors have been working on getting a persistent fever down. Because "the accordions of my lungs have been in squeeze position", Mary's also been pulling breaths off her hookah/bong (also known as a spirometer) to get her lung capacity back, which--like walking--also helps reduce fever.

After two full post-op days without water or food, she has also graduated to ... ice chips. Ahhh!

The surgeon reported that he got the whole tumor out ("there were negative margins") and found no evidence of metastasis: "It didn't spread at all." There will be follow-up and more extensive testing of tissues removed during the surgery to confirm this over the next 3-5 days, but the tissues that were tested during the surgery all showed that cancer did not spread and the tumor was caught in time.

As of the morning of September 19, Mary is talking and making the nursing staff laugh. She is still receiving a lot of (epidural) painkiller and will slowly be recovering her ability to drink and eat.

Thank you from the bottom of our hearts to the whole team who helped Mary and Maureen at the hospital, and all the individuals near and far who wished us well and prayed for a good outcome for this surgery. We are dancing in our hearts today!

Mary's abdominal surgery takes place at UCSF Medical Center (Long/Moffit Hospital) on 505 Parnassus starting at 2:00 pm on Tuesday, September 18. The full surgery--including a laparoscopy to confirm the CT scan showing that her cancer has not spread--is expected to take 4-6 hours, after which Mary will spend up to several more hours in post-op care. The waiting room where people can wait during the surgery is on the 1st floor at 505 Parnassus. The patient location and information number there is 415.353.1664.

Starting the night of September 18, Mary will be recovering from her surgery on the 14th floor of Long Hospital, and is expected to stay there for 7-10 days.

We will update this website late Friday or early Saturday with news of the outcome of the surgery, and periodically thereafter.

"We have received such an outpouring of support that we feel held up by a hammock made of the threads of all the people who know and love us".

Mary's pancreatic cancer may have been caught in time to remove the tumor. We will find out Tuesday, September 18, when Mary is having surgery in two stages. One is to assure it hasn't spread, and two--if we're blessed, and the facts and our faith say we are--is to remove the tumor, "resect" (take out part of) the pancreas and remove Mary's spleen.

The laparoscopy is to examine Mary's liver for evidence of metastasis that did not show up on the CT scan. If her liver looks good, the full surgery includes pancreatic resection and removal of the spleen.

September 18 is Rosh Hashana, and we hope mightily for a happy and healing new year, for Mary and for all who survived the terror of September 11.

After weathering some doctors who were extremely negative about Mary's prospects--including saying that a two-week wait to see an oncologist would make no difference, conveying that the tumor was inoperable and there was no treatment, and suggesting that the location of the tumor made any attempted surgery extremely dangerous--we secured an appointment with an oncologist at UCSF Medical Center to talk about treatment, including possible surgery. We feel very hopeful and ready to assert ourselves. Wish us luck and persuasiveness!

On Friday Maureen and Mary learned that Mary has a malignant tumor in the body and tail of her pancreas. Two weeks before, neither of us knew where the pancreas was. Now we can say, we know where the pancreas is. Mary is scared but hopeful, and not in any pain. She is 16 years clean and sober, a child-abuse survivor and believes in love, faith and recovery.

In the midst of this terrible day in the history of the world, with all its needless loss of life and infliction of terror, we humbly offer: all life is precious, all life is worth saving.

It started when Mary had some left-side pain in late May and later some severe but passing pain in her midsection. In the course of some doctor's appointments over the summer, she had tests to rule out an ovarian cyst and then a digestive condition her mother had, diverticulitis.

On August 31, Mary had a CT scan and at the end of that same day was contacted by her doctor saying the radiologists "are seeing something in your pancreas". Over the Labor Day weekend, we held the FAX authorizing a biopsy, reading the words "mass in body and tail of pancreas, biopsy to rule out cancer", scaring ourselves with what we were reading on the Internet about pancreatic cancer and preparing to do everything we could (insurance authorizations, talking to the right doctors, carrying records from clinic to hospital, etc) to line up a biopsy as soon as possible.

The fine-needle biopsy (huge-needle if it's you, and anyway there were 3-4 of them) took place on September 4, with Mary awake and squeezing Maureen's hand. It was tough.