Getting Organized

An infrastructure for supporting this battle is beginning to take shape. My cousin Sarah and I have roughed out a system for tracking/approving/paying bills. Giudi W (blessed be she) and I spent 3-4 hours setting up a filing system. Some of the "Share the Care" captains met this morning and roughed out as much of a system as can be roughed out at this point for the month of January. I won't know my radiation schedule until Jan. 3 at the earliest, and my time slot may change as the month progresses. A patient requests a preferred time, and if/when that time opens up, they slot you in. At the suggestion of the oncology nurse, I'm aiming for 8-8:30 a.m. M-F. Chemo will be once every 22 days, which I think means that my next chemo (after Jan 3) will be Jan 24. Acupuncture will be 2X/week if I can manage the travel; that schedule, too, will depend on the radiation schedule. We're looking at ways to link through this blog to the weekly care schedule and the rotating captains' schedule. Anyway, I'm feeling reasonably well prepared for treatment, and eager to get underway. Anxious, too, of course. But I guess that comes with this territory.

My Birthday in Pictures

As I write this, a pork tenderloin is roasting in my oven with apples, onions, and fennel, filling my apartment with appetizing smells. I figure I better enjoy my own cooking now, while I still have an appetite, and while I'm trying to bulk up.

I didn't write yesterday for two reasons: first, I left the house for the hospital at 7 a.m. and didn't return til almost 6, by which time I was sorely in need of a nap. Second, after my nap I celebrated my 60th birthday at a beautiful dinner hosted by my beloved friend, neighbor, and colleague Kym Abrams, in the company of a few close friends, whom you can see here, albeit not very well. It was a memorable party, very relaxed, great food, and just what the doctor ordered, you should pardon the expression. But by the time I got home I was ready for bed, not blogging, and so I retired without writing.

What was I doing at the hospital all day? First, getting a baseline CT scan, so that the doctors can see whether and how much the tumor is shrinking once treatment starts. The scan was not precertifed until 10 minutes before I went into the tube. This approach to precertification is apparently common practice at the Robert H.Lurie Comprehensive Cancer Care Center. They tell me it's not uncommon to receive authorization only AFTER the procedure has been performed. I find the practice decidedly disconcerting. On the up side, there was a message on my machine when I returned from the hospital that my chemotherapy has finally been authorized. This is very good news indeed and helps to set my mind at ease.

The second thing I was doing at the hospital was having a port placed in my chest, through which chemotherapy can be infused, and from which blood can be drawn as necessary. This will eliminate the need to puncture me and put a new IV in place every time one is needed. At the end of treatment the port will be removed, and as one nurse explained, everyone in the interventional radiology department will do a little dance. The little round blob in the upper right corner of the X-ray shows the port in position. You cannot see the catheter that extends from the port into an artery that goes to my heart, but there is a catheter nonetheless, and let us all hope it stays where it is supposed to stay and does what it is supposed to do, given the recent plumbing difficulties at home.

For those of you who have been following the plumbing saga, I now have a new shower head, temperature control and faucet, thanks to the good offices of Mary's plumber Bernie, who was cheaper than Tony by several hundred dollars but nonetheless darned expensive. I did not add Bernie to my photographic series titled "Men in My Bathtub," but I DID document the fabulous Ken D at work. He was here until 9 the night before my birthday drywalling and tiling the hole in the wall left by Bernie. Ken pronounced Bernie's work "excellent," and I am immensely relieved, both that Bernie knew what he was doing, and that I can now put the whole episode behind me.

My pork roast is ready, so I will sign off and set the table. Bob S and I will be leaving in an hour to go see Bette Davis in "All About Eve" at the LaSalle Cinema. Do we know how to have a good time or what? Much love, and hearty appetites to you all.

What Stands in the Way Is the Way

The plumber who was supposed to arrive at 9 this morning arrived at 1:40 p.m. instead. He just finished working, and my friend Ken is now doing the drywall. I am scheduled for a CT scan tomorrow at 7:30 a.m. and cannot find out whether I am precertified. The precert lady at the cancer center went home without responding to the two messages I left for her, and when the Patient Services Rep called Unicare (my insurer) to inquire about my precert, Unicare said they were waiting for additional clinical info from the precert lady. I phoned the director of clinical research, who told me yesterday to call him with any paperwork or administrative problems, but he tells me he doesn't do insurance. I still don't know if I'm even precertified for chemotherapy, but that's another story, and we have til Jan. 3 to sort that out. There's nothing to do but await developments tomorrow. I have canceled my meditation group tonight because of the work that is still underway in my bathroom. But I will meditate alone on a comment by one of our group: What Stands in the Way Is the Way.

Waiting

As I write this, I am waiting for a plumber. I am also waiting for an attorney to review the consent form for the clinical trial, which the hospital will probably want me to sign when i go see the oncology nurse in two hours. I am also waiting to see if the insurance company will pre-certify the clinical trial.

Regine, the precertification lady from Northwestern Memorial, faxed information on the trial to Unicare, my insurance company, on December 20. I phoned Unicare 12/21 to see if the fax arrived; the customer service rep told me Unicare's reviewing nurse was "in the file" when she (the customer service rep) looked it up on the computer, and because 2 people can't be in the file at the same time there was no way for the rep to check whether the fax had been received. However, the rep told me that since the nurse was in the file, she was probably reviewing the fax, so I could safely assume the fax had been received. Today Regine (the hospital's precert lady) called to say she had checked with Unicare on my precertification, and Unicare had NOT received the fax. So Regine re-faxed, Unicare confirmed receipt of the fax, and now it will take another 72 hours for Unicare to review the contents of the fax. Regine will phone Unicare again tomorrow to see if she can speed up the precertification process. I am supposed to begin radiation therapy January 3. Aargh.

I am also still waiting for forms from my insurance company that will authorize my cousins to run interference with the company on my behalf. I am also waiting to find out how to authorize my cousins to access my medical records. I have one authorization form from Northwestern Memorial Faculty Foundation, through which doctors' bills are processed, but I may need a second authorization form from the hospital itself.

On the bright side, the sun is out, and we had a lovely party Christmas eve. I had a lovely shower and brunch at my friend Francine's on Christmas morning, and dinner with my Oak Park cousins Christmas Day. I hope you all enjoyed the holiday, and that the new year will bring many blessings.

Goodbye Frida. Hello, Plumber?

I was thinking of canceling the trip to Minneapolis anyway. The restorative power of art (and Frida Kahlo) notwithstanding, the idea of getting to the airport two hours early, schlepping a carry-on bag all over O'Hare, sleeping two nights in a hotel when I'm not sleeping that well in my own bed, and then turning around and going back to O'Hare was rapidly losing appeal. Then Tony the plumber called this morning. His parts-meister has told him that the plan he proposed yesterday is not likely to work, and a better plan is to open up the bathroom wall and replace the entire assembly (shower head, handle, faucet, and drain), to the tune of $1899 (plus the $400 I paid him yesterday) . Tony generously offered to waive the $69.95 dispatch fee again.

This news in hand, I made my first visit to acupuncturist Dr. Fang Lin in Oak Park, at the offices of the famous Charles Lo, M.D., whom Leonard visited prior to his (Leonard's) spontaneous remission 20 years ago. I don't expect Dr. Lin to cure the cancer, but I expect she will help me survive the treatment. She showed me several acupressure points to work on when my hands (and feet, and knees, and elbows) are free, and I like her very much. I will visit her once a week prior to treatment and twice a week during treatment, as long as I'm able to travel.

I'm canceling the trip to Minneapolis in hopes of obtaining additional (and lower) estimates from two reliable plumbers and getting work on the bathroom finished before I start treatment Jan 3. I have a plumber's name from Giudi Weiss, I've left a message with another referral from Ken Davis (who might be in Mexico, Ken isn't sure). If anyone knows a good plumber who is used to working in old buildings like mine, shoot me an email pronto with contact info.

Meanwhile, merry merry and happy happy, and stop by my place anytime today between 3-10. Peace on earth. And love.

Stop by on Christmas Eve

I will be having my annual Christmas Eve open house December 24, 3-10 p.m. . There will be a pot of Polish mushroom barley soup on the stove, and another pot of soup for vegetarians. Cook your own pierogis, have some ham or kielbasa, and break oplatki with me (if Halina brings it). If we run out of food, we'll order pizza! If you'd like to share the spirit of the season, you're invited to make a contribution to my Zimbabwe families in lieu of a gift to me. I'll match your donations dollar for dollar.

The first (fairly impromptu) meeting of our "share the care" steering committee is happening in a couple of hours. I hope we'll get the beginnings of a system in place for helping out during treatment. As far as I know, radiation starts Jan. 3 at 2:30. I'm meeting Dec. 26 with the oncology nurse (they still haven't told me what time). Presumably after that I'll have a better sense of treatment details.

The broad outline for treatment is 6-7 weeks of radiation M-F, concurrent with two rounds (6 weeks) of chemotherapy. After radiation ends there will be another two rounds of chemo (a round is one week on, two off). So the total time will be about 13 weeks. My oncologist says by Memorial Day I should be back to whatever normal is going to be from here on in.

I should be fairly functional for the first two weeks or so of treatment, then the cumulative effects will begin to take their toll. According to my oncologist, weeks 4-6 are the most difficult. Two friends from out of town are trying to arrange to come stay with me during that period. I may need one more person to stay here for one of those weeks. If you're interested/available, watch this spot for more details on whom to contact (after Christmas).

This may be my last blog entry until after that meeting with the oncology nurse December 26, and possibly until December 30. At the moment I'm planning on spending my December 28 birthday in Minneapolis with my dear friend Mary. The plan is to get on an airplane the evening of the 27th, have a nice brunch on Friday, and spend the day at the Frieda Kahlo exhibit at the Walker Arts Center. We'll have a nice dinner, take in some music or a play, tour the Guthrie the following day, and be back home by 8:30 on the 29th.

I wish you and yours a happy and healthy holiday, filled with love and appreciation for friends and family. Peace.

It's the Little Things

Meet Tony of Bishop Plumbing, who arrived here around 8:30 this morning and just left. I had to sign a contract with him just to diagnose my problem; Bishop Plumbing's diagnosis fee is $214.75, which doesn't include the cost of fixing whatever problem is diagnosed. Tony waived the $69.95 dispatch fee (lucky me). To diagnose the problem he had to turn off the basement water valves to all three apts. in the building. It seems that a couple of these valves were installed when the building was built, in 1917, and before he would touch them he went into great detail about possible dire side effects of working with them. Sound familiar? Fortunately, none of these dire side effects occurred. I find this hopeful. Tony then removed my faucet, diagnosed the problem as defective O rings in the cartridge. The O-rings in the cartridge are smaller than my finger nail. There are 5 of them, of which one was missing, one was half gone, and I dont remember the rest. Tony's plumber's kit includes 60 different sizes and shapes of O-rings, none of which fit my cartridge properly. Tony observed that replacement O-rings seldom fit cartridges like mine, which are designed so that the entire cartridge has to be replaced, at great expense. He gerry-rigged some replacement O-rings, turned the water back on, and the stream from the faucet is now slightly heavier than it was after Bob left last night. Tony has to order a new cartridge, which will not arrive until Christmas eve at the earliest, possibly not until after Christmas. My cat is delighted. I am not so delighted, but what can you do. The total bill for this little adventure in home maintenance will come to somewhere around $660 (plus whatever it costs for a new wall plate; Tony's parts book didn't feature the wall plate, so he will have to look it up when he gets back to the office). Tony noticed all sorts of other problems with the plumbing in the basement (besides the ancient shut-off valves, which he says if we don't replace them now there will come a time when we'll need to shut off the water and won't be able to). Tony will write up a modest proposal for fixing those.

I will now take a deep breath and turn my attention to making soup for Christmas eve. My friend Nancy Gardner is coming over shortly to help get this party together, and tomorrow morning our "share the care" steering committee meets. Onward.

First tatoos

This is Virgil. This morning he gave me my first tatoos when I went for my mapping CT scan. The technology is amazing - data from the scan goes directly into a computer, which crunches gazillions of bits and bytes to figure out a plan for delivering maximum burn to the cancer and minimum harm to everything else. The plan then goes to plain-speaking radiation oncologistDr. M, whom we met yesterday, who blesses or refines it as she deems fit. Someone left a message that my treatment will begin January 3 at 2:30. I find this odd, since Jan. 3 is a Thursday, but presumably it will become clear as this unfolds. Given the Christmas holiday, I'm not meeting w. the oncology nurse until 12/26. Presumably at that time she will answer whatever questions I have.



This is the view lo0king up from the bed of the CT scanner, before you go into the tube. Anyway, after the CT scan I had a solemn and definitely chilling talk with the radiology nurse about possible side effects, which I really don't care to go into. As the nurse pointed out, the alternative -- not undergoing radiation therapy-- is even less palatable than potential side effects. When I got home I had a chat with the young pulmonology fellow, the intelligent and compassionate Dr. K, and he assuaged my fears somewhat.



My new housekeeper was supposed to come yesterday but couldn't find my place, so she came again today, and again couldn't find it, so after she phoned I went to pick her up at Potomac and Hoyne. I showed her around the place, gave her a set of keys, and slipped out for a haircut. Upon my return, the drippy bathroom faucet had developed into a waterfall--I don't know what she did when she was cleaning the bathroom, but I couldn't turn off the water. I left two messages for my plumber between noon and 4:30, and finally called my friend Bob S, who arrived within an hour and managed to reduce the flow to a medium trickle. At this writing, a plumber is scheduled to come tomorrow morning.



Here is Bob doing one of many good deeds. Can you tell I'm figuring out how to upload pictures to my blog? Anyway, I am ending the day in much better spirits than this morning.

My Christmas eve open house is on, as far as I know. Come early, stay late (3-11). I was going to try to see an acupuncturist tomorrow, but I have to deal with this plumber first. Maybe Sat. afternoon. I will be meeting with some steering committee members Sunday a.m. to get the ball rolling on organizing all you volunteers. For now, good night and many blessings, and I hope to see you Christmas eve.

Going for the clinical trial

I've opted for the clinical trial, though I still haven't received precertification from the insurance company. This morning I was summoned to the hospital on an hour's notice to meet with the radiation oncologist, a direct, fairly blunt woman who informed me that the radiation is going to cause impaired lung function, so don't come to her in two years' time complaining that she didn't tell me. I like her nonetheless.

She wants to "map" me right away and made an appointment for a special type of CT scan for 8 tomorrow morning. I told her I wasn't precertified. She said to sit tight and she'd contact the oncology nurse who is allegedly handling precert. A half hour later or so the radiation doc told me I AM precertified, and her minions proceeded to do what they do. When I returned home, I decided to check w. the oncology nurse, who told me I'm certified for CHEMO, not RADIATION. This led to half an hour on the phone w the insurance company, which told me I am NOT certified for chemo, certification is PENDING receipt of clinical info from the hospital and authorization by an insurance nurse. They also told me precertification is NOT required for radiation therapy, despite the fact that last week they told me it IS required.

On the bright side, the hospital faxed the form that allows me to authorize my cousins to access my medical records, so THEY can deal with the insurance company on my behalf. I am still awaiting the forms I requested several days ago from the insurance company that will authorize my cousins to represent me.

I do not yet know when treatment will start, but the sooner the better if you ask me. I can feel this thing progressing.

A Seat at the Table

A couple of weeks ago, Leonard Borden was telling me about his fight against kidney cancer. He would visualize his white cells as an army of samurai attacking the enemy cancer cells. That imagery wouldn't work for me. I would send a swarm of Polish housekeepers to clean and scrub and vaccum and polish every last cancer cell out of my body.

When I was 17 or 18 and home from college on vacation, my mother, my godmother and I went to visit the matriarchs of my mother's side of the family, a pair of sisters who owned a 2-flat at 2511 N. Springfield. Eugenia Cybulski Abrams came to America from Poland in 1907, at the age of 17, crossing the ocean alone, with no English, and making her way somehow from Philadelphia to relatives in Chicago, among them my mother's mother. Chicago was a real cow town then, with unpaved streets and few amenities. "I lost my shoes in a mud on Chicago Avenue," Eugenia told me once. "It was a much worse life than Europe. But I never made complaint to Europe once."

Eugenia's sister, Eleanor, joined her within a year, hoping to work for a little while, make some money, and then go back to Poland. World War I interfered. The sisters built a life here together. Eugenia worked as a seamstress for Hart, Schaffner and Marks, where she met her husband, Michael Abrams. The couple bought a 6-flat on Cornelia Street, lost it to the Depression, started all over again. Eugenia fought and won a battle with tuberculosis. Her husband Michael went out for a paper one day, was hit by a car and killed. Eleanor moved in, and the two women raised Eugenia's son and daughter together, much the way my mother and godmother raised me. Eleanor worked until the age of 75 making sandwiches for Harding's cafeteria. The sisters grew old and became Busia and Cioc, grandma and auntie, the much-loved heads of our family.

The heart of the sisters' apartment in the two-flat on Springfield was the kitchen at the back of the house, and the heart of the kitchen was an oval formica-topped table, with little flecks of dark and light grey, surrounded by aluminum-tube chairs with red naugahyde seats and backs. That day when my mother, godmother and I went to visit, the sisters must have been in their late seventies, my mother and godmother in their late fifties--my age today. Eugenia's daughter was there, and also a neighbor lady, maybe 90 years old, who sat to my left.

At 17, I was the youngest person in the kitchen by maybe 40 or 45 years. At one point I noticed that every woman there, including me, was sitting straight-backed and alert, hands folded in front of her and resting on the table. There was so much power in the room at that moment it would not have surprised me if the table had started to levitate. I remember wondering if I really belonged there, if I would ever be as strong as these forbears.

Just now I awoke from my first full-fledged night sweat. That kitchen table was at the front and center of my consciousness, all those women strong and clear. I did and do belong among them. I am one of them, and I have earned my seat at the table, and they are with me. I am facing a formidable foe, but I have strong allies, and I can do this. I can prevail.

Long day

Spent 5 hours at Rush getting a second opinion. Registration was about 2 hours. Short version: the Rush guru says go with Northwestern's clinical trial, on grounds of fewer side effects and potentially much better outcome, even cure. I have some more due diligence to do tomorrow, but that's the direction I'm leaning in. On the bureaucratic front, my insurance company wants info on the clinical trial to present to their review panel of docs/nurses before they will cover it, and I've run into some snags making this happen. Believe I may have been talking to the wrong person, and hope I've now emailed the right person. My oncologist's physician assistant phoned a message saying not to worry about financing the treatment - I left a message saying that I'm reluctant to take on a few hundred thousand in medical bills without knowing what portion, if any, will be covered by my insurance. I'm feeling more hopeful about the clinical side, and figure that eventually the bureaucratic snafus will sort themselves out. Nothing more profound to share tonight; am headed for a nice bubble bath, a half hour on the meditation cushion, and bed. If anyone knows a good health insurance attorney, email me. Love to all.

Condo for rent, Puerto Vallarta, Jan 11-18

Instead of celebrating my 60th in Mexico with old friends from high school, I'll be in treatment. Which means that our condo is available. Beautiful 2 BR apartment, $250/night, $1750 for the week, sleeps up to 6. If interested, contact Paul Bernholz & Associates, mention Vista del Sol #309 for those dates. Email paul@paulbernholzassoc.com with copy to fran@paulbernholzassoc.com. In US, 310.598.5775, in Puerto Vallarta, 01152.322.225.9106.

Learning curve

Met w. oncologist at Northwestern, today. She presented two treatment options: one the standard approach to this disease (2 cycles of chemo concurrent with 6-7 wks radiation, possibly followed by 1-2 more cycles of chemo), the other a clinical trial using a different drug but similar schedule (2 cycles chemo concurrent with 6-7 weeks radiation, definitely followed by 2 more cycles of chemo). Tomorrow I get a second opinion from a guru at Rush. Leonard continues to be invaluable as a guide to how to approach decision making and also as a researcher and information source. He may come with us tomorrow to see the second-opinion guru. "Us" is Giudi Wand me. Giudi has been a superb recording secretary. There is a steep learning curve with this stuff, and not much time to climb it, so I'm asking people not to phone for a few days so that I can focus on what I need to focus on. Please don't be offended if I don't get back to you right away. I will get back to you eventually. Love, Valjean

Testing finished. Now, treatment options

Finished lung function tests today, picked up path slides, 3 path reports, MRI report, pulmonary notes, PET scan report, all for faxing to second-opinion doc. This required visits to 3 floors of the hospital and one office across the street. Minor victory this morning: determined that the radiation oncologist my doc wants me to use is in the Unicare network WITHOUT PHONING UNICARE. Took only 10 minutes and 4 phone calls to (1) doc's office (2) physician billing (3) hospital billing (4) back to physician billing. Meet tomorrow with oncologist to discuss pros/cons of 2 different treatment approaches. Once treatment approach and schedule are set, watch this space to find out whether Christmas Eve open house is on or off (at this writing, it's on, but you never know). Much love.

Winter wonderland

We had a big snowstorm last night, and this morning when I woke up, there was a winter wonderland outside my office window. I will attempt to upload a photo in a minute. Several long-lost friends have re-emerged, one of the many gifts of this cancer. Have had a too-busy day today, so will not write more. I find I need more quiet time than usual these days. Much love to you all.

Pies from scratch

I probably buy bananas 2-4 times a week. I like to start my day with a banana and a capuccino, and I often snack on another banana or two during the course of the day. I ran out of bananas last Wednesday, with no chance to get to my local store. Kate G presented me with a bunch, unasked, when she picked me up for my PET scan on Thursday.

So my day today began with a banana from dear Kate. It continued with an offer from my cousin Sarah to help me manage interactions with the insurance company. She has had a lot of experience sorting out claims associated with her son Rob's long illness. Sarah is not the only person to have offered help with this. Three others have come forward, including my graduate school roommate in Kansas City. Now a fourth--I just got off the phone with my cousin Noreen, who also volunteered for the insurance committee. Noreen's son John has had multiple health problems since birth, and Noreen has done a superb job managing his care and his insurance claims.

Today, at the suggestion and in the company of a new friend, Laura S, I visited Gilda's Club-Chicago and decided to become a member. One issue that has concerned me is how to manage the 40+ people who have volunteered to help me as I go through treatment. If we can't figure it out ourselves, Gilda's staff can help us get organized. They also have a monthly networking meeting for people living with lung cancer.

As I look around my house, I see art, books, food, clothes, music and more from loved ones near and far, alive and dead. My life and yours are intertwined in ways known and unknown with billions of other lives. I couldn't write this blog without countless teachers, without the people who mined the uranium that powers the plant that provides the electricity that sends the data, without the immigrant labor that built my apartment, the people who work at the phone company -- you get the idea. As a friend observed recently: "If you want to bake a pie from scratch, first create the universe."

Brain and bones okay

Dr. P, my pulmonary oncologist from N'western Memorial, just phoned to say preliminary reports of PET scan and MRI of brain say the cancer is confined to my chest. Have a good weekend, everyone. I certainly intend to. xox

Kindness spoken here

Dave Fiore has been my dentist for more than 20 years - I think I was among his first patients in the early 1980s. His work was cut out for him. The only other dentist I had ever seen was a friend of my mother's from the old Polish neighborhood, who didn't believe in continuing medical education and once told me that flossing could harm my gums. In Dr. Fiore's old office on Halsted Street, there used to be a sign: "Kindness spoken here." Dr. Fiore's hygienist, Amy, is one of my favorite people. I just came back from their office, where I went to get my teeth cleaned ( I don't want to go into treatment with a mouth full of plaque). At the end of my hour, Amy presented me with a card signed by everyone in the place, plus a soft sweater and scarf to keep me comfy to and from treatment. Dave held my hand. We all had a cry and a hug. The universe provides.

Now to track down my pathology slides and path report and the other paperwork I need to bring with me to my second opinion appointment next week. After that I have some reading to do to prepare myself to understand what these docs are talking about. So most likely I will turn off the phones for a while. Please don't feel offended if you're trying to reach me. I will get in touch eventually, but I've been spending hours on the phone every day, and for the next few days I need to focus on getting educated. xoxo

Why we need health care reform

This is my only chance to write today, so I'll make it quick. Feel good physically, am heading in a couple of hours for my PET scan, which will leave only one more test for Monday (pulmonary function). Am meeting Tuesday at 2:40 with pulmonary oncologist, presumably to get her recommendations. Decided to make appointment today with a lung cancer guru at Rush to obtain a second opinion, and phoned insurance company to inquire whether this was covered. This led to more than half an hour on the phone with Unicare, mostly on hold. The initial customer service rep couldn't find the name of my guru in her system. I asked her to check onN'Western Memorial and Lurie Comprehensive Cancer Care Center, while I had her on the phone, and she said that Northwestern Memorial's contract was canceled August 31. Someone from Unicare told me this the other day, too, though Northwestern assured me there's not a problem. I explained to Unicare that NMH and my docs are all listed as participating providers on the company's web site, and she said the web site is out of date. Since AUGUST? How long does it take to update a web site? I had a mini-meltdown and started working my way up the food chain, and eventually received assurance from a supervisor who identified herself as "Kristi B" that the two institutions are participating providers. Then we turned to the question of the second-opinion guru, who is listed on Unicare's web site. Kristi said she couldn't find him in her system. She told me that it is my responsibility to phone Unicare to verify participating provider status no matter what the web site says. Then she either hung up on me or we were cut off. I suspect Kristi was looking up my guru at Northwestern, not at Rush, but I am rattled and cannot take another half hour on the phone with Unicare right now. I'm sure this will all work out, but these interactions so far have been the most upsetting aspect of this whole experience.

On a brighter note, had some lovely conversations and email exchanges earlier today with family and friends. There is so much love in my life, I am truly blessed.

Brain MRI

Had an MRI of brain this morning. No big deal - it was like being strapped down at a very bad punk rock concert. Learned I'm not claustrophobic. Tomorrow night, a PET scan. Met a social worker by phone, ordered a reference book through link from Leonard, who continues to be invlauable, got some invoices out. Spent some time on the phone w. my insurance customer care representative. Some docs at Northwestern are in the preferred provider network, some are not. This is going to be fun. Customer care rep couldn't tell me if care provided through Northwestern's Lurie Cancer Center is covered. She needs a tax ID number. I emailed asking for it. Stay tuned. There's a reason they call us "patients."

Team leader: My kind of girl

Today Giudi Weiss drove me to meet with Dr. P, pulmonary oncologist (lung cancer specialist) . I liked her a lot and feel I am in good hands. She's smart, beautiful, compassionate, a leader in her field, direct but gentle, very human. She will lead my multidisciplinary care team. Tomorrow I get a brain MRI at 11, Thursday a PET scan at 5:15. My dear friend Barbara U, a retired logistical manager, will drive me to the MRI. I've asked her to organize volunteers for when treatment begins. I'll mostly need drivers, also possibly other help, depending on side effects. I am so blessed--I have a four-page list of volunteers already. For the next week the main goal is to get this cancer staged, that is, see if it has moved beyond the chest, and to understand what we're dealing with. Then the team will talk it over and put a treatment plan together, probably a combo of chemo/radiation, but they can't really say til the cancer is staged. I will most likely obtain a second opinion, possibly a third and fourth. At this point it looks like treatment will start right after the holidays. Stay tuned for details on possible side effects, etc. Meanwhile, my job is to bulk up. The good news is I'm going into this in good shape and in reasonably good spirits. People like me seem to do best, so that's a comfort. That's it for tonight--I'm pooped, having spent several hours at the hospital and on the phone getting pre-authorizations and pre-registrations sorted out. Will check in tomorrow after the MRI.

Background

Friday, Nov. 30, a pain in my chest sent me to Northwestern Memorial Hospital's ER, where a CT chest scan showed a suspicious mass on my right lung. I met with a pulmonologist the following Wednesday, had a biopsy Thursday and on Friday (Dec. 7) received a diagnosis: non small cell lung cancer that has invaded some lymph nodes in the center chest and so cannot be removed surgically. The stage, IIIB, is their best guess to date. I am scheduled for a PET scan 12/17 to see if the cancer is confined to the chest or has spread. Some lung-function tests will also be performed that day. Tuesday, 12/11, at 11 a.m. I will see a lung cancer specialist who comes highly recommended and was one of the docs who wrote the clinical guidelines for treatment of this condition. Northwestern Memorial's tumor board will meet this Wed. a.m. (12/12) to discuss my case and come up with treatment options. Unless they have to wait til after the PET scan, I'm not really sure.

The pain apparently was caused by pneumonia and a partially collapsed lung. The ER gave me some antibiotics, and within 48 hours the pain was no longer an issue.

The universe provides. The night I landed in the ER I was supposed to meet with some classmates from Knox College, including cancer survivor and expert Leonard Bord, who was given a very bad prognosis 20 years ago and is still alive and incredibly helpful todaeny. He has been most generous with his expertise and compassion, and I am blessed to know him.

Last Thursday, the night before the path report came in, my zen meditation group was supposed to meet in my dining room, as we do every Thursday. None of the regulars came, but a brand-new member, who had attended only once before, turned out to be a certified nurse healer. She did a session with me last Thursday night, and another one just now.

I am also blessed, and deeply moved, by the outpouring of love and support that this diagnosis has generated. Thank you all so very, very much. I have prayed to be able to use this experience, whatever it brings, to open my heart and appreciate each moment, breath by breath. I know you hold me in your hearts, as I do you in mine.