Wherein Truffle earns her moniker

Okay, so today was a bit draggy. In fact, I even went back and took a nap in the afternoon. The anti nausea oral meds worked up until about 11, when I started feeling queasy and popped another one. However, they've only given me enough meds to last me through tomorrow and that is making me nervous particularly because I can aspirate any vomitus so easily given the permanent open position of my vocal cords.

I emailed my oncologist's office late in the morning, but have not received a response. I called the consult nurse late in the afternoon and they were able to refill one of the Rxs but not the other one. So I will have to find a friend to go to GH Northgate tomorrow to pick it up for me.

In the meantime, my youngest dog was making a nuisance of herself. Somehow a box of Mrs. See's chocolates had been left on the coffee table in the living room, unknown to me. When I got up from my nap, I kept hearing this nose snuffling and ruffling of papers coming from there. Further investigation showed that my little 8.2 lb puppy, Truffle, had knocked the box down from the coffee table, manage to chew the lid off and either had daintily eaten several...truffles....or had licked a fair number of them. A quick call to my vets, NE Veterinary, which is just around the corner from where I live, thank goodness, got me in to an emergency appointment at around 4pm. We showed up with the box as Exhibit A and Dr. R and his vet tech took a look at puppy and box and decided that she Should just be kept under close observation and not made to vomit. Which, I can tell you eased my insides considerably. Because I am afraid of the cascade effect.....

So I perambulated home with Truffle in tow, stopping to play with Alice the next door golden retriever, and to greet another attorney, also named L, from work, who was bringing me more gifts and work related items so I can continue to work from home. Good to get out of the house during a period of relative warmth even though it was between rain showers. But this is Seattle in the fall, and we take what we get.

End of the First Movement

The chemotherapy went without a hitch. The 3 anti nausea drugs they used worked, although I am becoming slightly queasy right now, perhaps a function of the time.

The use of the chest port certainly made things easier. The needle that they used has a barb on it, like a fishing hook. Luckily my skin was slightly anesthetized before it went in and afterward, felt nothing. Although there is an ache in that area right now. They began with some anti anxiety meds followed by anti emetics and a large bag of IV fluids before they even began with the chemotherapy agents. The pemetrexed came first. Then more IV fluids followed by the cisplatin. And more IV fluids. The nurse, V, was from New Zealand and we had several delightful conversations about her country, as I had been planning to hike the Milford Track or Trek this coming January with my friend T from Honolulu, until the cancer intervened. V will be taking of for quite a spell of time in December and part will be a visit to New Zealand. I am envious. But it's merely a postponement.

My friend, A, drove me to Group Health, and my friend, D, joined us about a half hour later in the infustion ward. And they both stayed with me the entire time, ~ 6 hours, and kept me wonderfully entertained. My daughter showed up after she had completed her all-night rotation at UW hospital. She was present for the visit by the oncologist, then left to attend a meeting outside the hospital, but later came over for dinner, which was cheerfully and graciously provided by L, an attorney in my office.

I am deeply tired, but also don't want to sleep because it feels really good to be done with a procedure I've been dreading for quite a while. It has been a very intense, but quiet day and I am glad to have it behind me. But it is just a start.

Prelude

Well it's the night before chemo is to start--at about 9 or 9:30 tomorrow morning and run for 6-8 hours--chemo infusions will take about 3 and the rest will be filled with IV fluids to protect the kidneys, as they are at risk of damage from the cisplatin. The other common side effects include:

* hair loss
* feeling tired or weak
* nausea and vomiting (this is the big one)
* hearing damage in the higher ranges

Less common side effects include:

* low blood cell counts starting 2-4 weeks after your infusion (the nurse navigator said it would be more like a downward spiral for ten days but more on that later)
* numbness, tingling, and reduced feeling in fingers and toes
* sweating, difficulty breathing and rapid heartbeat (which are very rare)

The other chemotherapeutic agent, pemetrexed, also shares some of these side effects but also can cause:

* red or painful rash on the face and chest
* sores in the mouth, throat or lip
* chest pain

That's quite a concantenation of side effects, and the cure is not guaranteed, in fact it's less than 50%. Nothing like bringing out the risk taker in me!

According to Ms. F, my nurse navigator at Group Health, who met with me today after

a) my scheduled appointment with the Speech Language Pathologist for my swallowing and speech difficulties (where I learned a lot), and

b) an unscheduled visit to xray for a chest exam and quick meet with my oncologist (because I had difficulty breathing while sleeping Monday night--chest xray showed no pneumonia and oxygenation of the blood continues to be good);

the path that my treatment will take is that once I have the chemo, my blood counts (white cells, red cells and platelets) will fall for ten days after the chemo. For the first few days, I may not notice this because I will be taking the dexamethasone for 2 days following. But eventually, I will hit bottom 10 days from the chemo, then the blood levels will begin climbing back up for the next 10 days, reaching normal levels. A blood test will be done the day before the next chemotherapy treatment to confirm this, then chemo will be administered a second, and then a third time after, again a 20 day wait. My nurse navigator did not pull any punches: she expects this to be a brutal treatment regimen. And I have to learn to say "No" to people, to put myself first in this and not to try to take care of others. I have a bottle of hand wipe by the front door for all visitors to use upon entering and one in the kitchen and my car and purse. I am hoping that no one who has as much as a sniffle will come by because they can't visit during this time.

My nurse navigator also said to be careful about flowers. They cause more problems when I am immuno-compromised than they are worth. And gardeining, a real love but for which I have small talent, is out for the most part--can't get dirt under my fingernails unless I double glove and take it very easy. So funny cards and emails are the best therapy for me, right now. Humor can heal, I've believed for a long time.

The other news from the transvaginal ultrasound was disquieting but not to focus on right now. I have two, not one, ovarian cysts. The first cyst is on the right ovary and is a .9cm cyst and then there is a 9.1 cm cyst with "minimal debris." There is also a 1.4 anterior body fibroid. My friend, L, the gyn surgeon wrote to me tonight that they should be removed after the chemotherapy treatment is ended. Because neither the blood test nor the PET scan showed that they were cancerous, we will just assume they aren't for now. Fine. As my friend, D, who very kindly chauffeured me to all my appointments today, and asked very good questions, when she was not out in the waiting room having telephone scheduling conferences with judges and the other side said: "You get to be a professional patient, now!" I will give them a run for their money, as always.

On to the meeting with the speech therapist, which was actually the most interesting part of my day because I learned so much. Hence the picture at the beginning of this post. And I hope I am remembering all of this correctly, courtesy of Ms. K.

Our larnyx is a tube located in the front of our neck, while the esophagus is located in the back of our neck. When not in operation, our esophagus is closed up quite tightly. It's only when we swallow that it opens up to take food. But these two different tubes, one leading to the lungs, the other the stomach, have unique arrangement in humans, the only arrangement that is seen in mammals where the tubes cross, which can lead to problems, like those that I have.

When you chew food and.swallow it, your epiglottis serves as the first lid, closing off the larnyx so the food is not aspirated, or swallowed into the lungs. The vocal cords serve as the second barrier to this. Think of the vocal cords as a "V" in shape, with the narrow part of the "V" in the front part of your neck, and the open part of the "V" in the back, next to the esophagus. When the vocal cords can't close, like mine, there is an opening in the back where the "V" is open, and sometimes food and water can be aspirated when the epiglottis, the first door, somehow fails to do close and thus, do its job.

So I have to take precautions. I cannot eat things like steak and pork chops anymore or sharp foods like (damn) chips and nuts and popcorn and uncooked vegetables. Etc. etc. etc. But I can soak croutons in soup, and perhaps even chips in dip might make it. Yay!! But no cookies or cake. Although cheesecake is still good. Phew. And I have to remember to turn my head when I swallow to help artificially close off entry to the larynx from the mouth. Because breathing is the most important function that the body does, that comes first. And, given our human physiology, sometimes that can cause problems. End of lesson for tonight.

Just one personal observation here. When I was very, very young my family took a trip to Coldwater Lake in Michigan and stayed with the Reeves family who had a cottage there. I remember being on the wooden float out in a deeper part of the lake, having been helped there by my father. It was wonderful to be with my dad, who as a pediatrician in a small town, I did not see very much. He wanted to teach me to dive from the wooden float. And I froze up. Perhaps it was fear of failure in front of someone I idolized, but I was also afraid of not diving and instead smacking into the water and the pain it would cause me. What I remember is having an total meltdown tantrum on the float in front my father and the other family as I absolutely REFUSED to even attempt to dive in the water. Fear of the unknown and fear of pain has been, at times, almost paralyzing to me. It's the dread the freezes me up. I hope I can overcome that dread tomorrow and acquit myself with integrity. It is one of the guiding principles of Reiki as told to me by my friend S, who gave me a third Reiki treatment this evening in preparation for the morning. A profound and moving session.

I owe many thanks to many people, from my online women attorney friends; to my friends at daily kos who commissioned a healing quilt for me; to my friends at work who are bringing me dinners; to my friends at church who will be doing dog walking and other chores for me; as needed, in the near future, to S, my Reiki practitioner and friend; to my friends A and D who have been my eager taxi drivers and participants in my meetings; to my mom, my sister B, and my daughter, S, who have been there every step of the way; to my friends and ob/gyns Drs. D and M who have shared meals, and their fonts of caring and perceptive advice with me; to my college friends who have been there for me in so many ways, particularly J and F who I have called on for their medical expertise and they have responded unstintingly; to my childhood friend, J, who is now a dentist in Cleveland; to T in Honolulu; and to all who have provided blankets, knit hats and shawls, and sent presents, cards or emails, or offered up prayers. If I am not throwing a tantrum tomorrow or breaking down, it will be in no small part due to all of your kindnesses along this very long way.

Thank you, all of you.

More adventures with Sound

Tonight is potpurri--make of it what you will.


Sunday I went with a group of friends from church to see Joseph and the Amazing Technicolor Dreamcoat at the Fifth Avenue Theatre in downtown Seattle. There's a week left in its run, and I can recommend it highly for the entertainment value. My church choir had done our own very unique version of this Andrew Lloyd Webber musical two springs ago and we had purchased tickets this past summer to see how the pros do it. The Fifth Avenue version stars some fellow who was a finalist on American Idol and wears his hair a la Orlando Bloom in Lord of the Rings but that isn't necessarily a mark against him. Final verdict from all the attendees was two thumbs up, although we thought our own Potiphar and Pharoah/Elvis were just as good as the singers on stage.

This is the only youtube I can find of the current run, but it's indicative of the energy the entire cast brings to the production. Joseph at the Fifth Avenue Theatre

Then today it was up early and off to Group Health in Bellevue for a transvaginal ultrasound (another adventure with sound just to state the obvious). I'm going to give a "Guy warning" here so that if you are a guy and find talking or reading about this stuff distasteful, stop right here and just read the one word Executive Summary:

ICK!!!

The technician setting up the appointment had advised me to drink 32 ounces of water an hour prior to the ultrasound so my bladder would be full. I did as instructed and arrived at 8:20 for an 8:30 appointment, shall we say, primed and ready to go [this despite a pouring rain and bumper to bumper commute across the 520 bridge]. 8:30 arrived, and no go. Five minutes passed, ten minutes passed. I was getting very, very explosive. Finally at 8:45, I uncrossed my legs, stood mainly erect and made it to the check-in desk, where I enquired as to the delay. Now my voice is a chirrup these days, therefore, I lack the tone necessary to convey a real sense of urgency, so my words have to do it for me. What I recall saying is something to the effect that if they were not quick about getting me into the ultrasound room stat, all that careful preparation was about to go to waste. Immediately after I returned and gingerly lowered my body into my seat, the technician was out calling my name.

The first part of the procedure was a typical ultrasound, similar to the ones I had during my last two pregnancies, where ointment was spread over my abdomen and a hand held device was rubbed on top of my skin which, using sound waves, created a grainy, black and white reflection of the organs below my stomach. Once that was completed, I was allowed to dress and go to the bathroom (whew!) and then return for the transvaginal ultrasound. Apparently this is a technique used for most pregnancies these days and it involved an extremely long but thankfully skinny wand shaped instrument with an ultrasound camera on its tip, that you insert into yourself, and then the technician moves ii up, down and all around inside. It was quite uncomfortable during portions of this procedure and induced nausea at one point, albeit not severely. Here is what the result of one looks like:



Once this procedure was complete, I was free to go. My friend, D, drove me home after a great breakfast at her favorite greasy spoon. Nausea gone--Yum!

One last word of caution, do not order prescription refills from Group Health's automatic refill service unless you have more than a week of your original prescription left. It took a great deal of effort to obtain a 'filler' prescription late this afternoon from Group Health at their Northgate pharmacy, which will cover me while I wait for the main prescription to be delivered by 'snail' mail. Luckily a friend was able to do the phone work and help out in talking to the pharmacist-- because my voice is so far gone at this point, I even have difficulty ordering from a McDonald's drive in. I continue to be amazed at how very much I relied on my voice to simply transact the mundane business of life, until this happened. These days, I am a stick at conversation. But on the other hand, it has kept me from telling certain people exactly what I think of them, when pushed too far. So perhaps, it is a good thing as well.

And I still can write.

The Big Squeeze

Today was mammogram day. I had scheduled it in back August before the cancer diagnosis, but it was initially set for early October. However, the flu season hit the Group Health Capitol Hill mammography clinic then, and they reset it to today, Saturday.

I showed up a half hour early, was seen quickly and was able to get home ahead of the Husky-Duck football game. However, I can tell you that having it done so close in both time and proximity to the installation of the port in my chest made it even more exquisitely painful than normal. The woman who was my mammography technician, admitted that it was harder to properly position and xray small breasted women than those with larger ones. And for those of you who are unfamiliar with how to describe what a mammogram is like, I offer you this unsourced bit of humor that has, at its core, a kernel of truth:

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following exercises, you will be totally prepared for the test! Best of all, these simple exercises can be done at home.

Exercise 1
Open your refrigerator door and insert one breast in the door. Have one of your strongest friends slam the door shut and lean on it for good measure. Hold that position for 5 seconds. Repeat with other breast.

Exercise 2
Visit your garage at 3am when the temperature of the cement floor is just perfect. Remove your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back up the car until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

Exercise 3
Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Ask the stranger to smash the bookends together as hard as she can. Set an appointment with the stranger to meet next year and do it again.

You are now properly prepared!

And, of course, click on the title for more humor.....

Intermezzo

I received a call from my treating oncologist late yesterday afternoon. He had returned from Colorado, and was slightly under the weather as a result of receiving the H1N1 mist vaccine on Wednesday. But our conversation was energetic and it was agreed that:

1) I start chemotherapy on October 29, 2009, using the formula prescribed by Dr. M at SCCA.

2) I will continue to take the folic acid supplements throughout the chemotherapy regime. The high dose steroids to be taken the day before and two days post chemotherapy should not pose a long term problem, given the restricted dosage, but I might be a bit energetic and/or grouchy on the days that I am taking them. I forgot to ask about water gain as well. Maybe I can increase my bench presses too.

3) The blood test for cancer markers for ovarian cancer and lung cancer both came back negative. "Well I guess I don't have lung cancer," I joked with Dr. N. Right.

4) I should try for the mammogram this Saturday even though the port insert continues to be a bit tender. I have a nice green/purple bruise going south from the insert as well.

There were other points of discussion, but I can't remember them right now. Expect editing of this entry as my memory returns.


At the last moment, yesterday a dear friend called and said that they had room that evening at the commons table of Art of the Table, in the Wallingford neighborhood of Seattle. It is a prix fixe menu modelled on similar restaurants in the Bayonne region of France, where the chef trained. Click on this post's title to see the restaurant's home page.

It was a fabulous dinner, made from ingredients the chef had gathered from local farmers and artisans. Here is the menu:

Fall Into Autumn
October 22nd, 23rd & 24th


first course:
Roasted Garlic Soup,
Melted Leek Crostini



second course:
Roasted Chanterelle,
Butternut Squash Gnocchi,
Housemade Bacon



third course:
Braised Skagit River Ranch
Oxtail Cabbage Wrap,
Autumn Veggies,
Parsnip Puree, Crispy Shallots



last course:
Hazelnut Tart, Apple Compote,
House Made Laurel Ice Cream




Not included in the formal menu, was an appetizer composed of celeriac root with an aioli whose ingredients other than garlic, escape me (that pesky memory again), and a second "bouche amusante" which cleared the palate prior to the main, or third, course, that was a pear apple sorbet topped with currants and pieces of pickled lemon rind. The four of us sat at the commons table, and while not engaged in conversation among ourselves, got to meet a very nice young couple across from us. An evening reminiscent of a number of fine dinners I have enjoyed in France in times past. Julia Child would not have felt out of place there. Bon appetit!

Interlude

Now comes the waiting part. Chemotherapy will begin at 8:30 October 29th. In the meantime, I received a Vitamin B-12 shot yesterday and a bottle of folic acid pills that I am to take once a day for the week preceding the chemo. Then a twice daily dose of high level steroids the day before chemo and for two days afterwards. The first two steps are done to cushion the toxic damage on my body by the chemo, and the steroids are to make my body accept the chemo more readily so it can wreak its havoc on my 3 tumors. The pharmacist filling the prescriptions at Group Health said that the steroids will make me feel good and full of energy, and that when I stop taking them I will crash. So expect that to happen on Sunday November 1.

I also had the bloodwork done to check for the ovarian and lung cancer markers amd make sure my bood levels are high enough for the chemo. I have a vaginal ultrasound scheduled for next Monday at Bellevue (Group Health Central had no openings until Nov. 11!)and a mammogram this Saturday, that was postponed from earlier this month, when everyone in mammography was out sick with the flu. Not sure the port installation will permit the mammogram.


Waiting is difficult. Today I found a YouTube recording of Ensemble Alcatraz, a group based in San Francisco that performs vocal and instrumental music from the Middle Ages. I first heard them on a classical radio station 23 years ago when I was home on maternity leave with my oldest son. It made me sit up and call the station asking for the artist. I have been an avid fan ever since then. The song is embedded in the title--click on it to listen. Here is another, similar music track.



Enjoy

Late update: the blood test for the Oca 125 marker for ovarian cancer came back in the normal range. Good news!

Doppio

Two medical things happened today.

And one personal thing:

Thank you to all my internet women attorney friends who sent me the above ingredients for a healing charm bracelet to wear during my chemo. The last charm was soldered on by my friends at MaMo Jewelers in Seattle, who did the whole thing gratis. As you can see, the finished product is quite lovely. I would like to say I will wear it in good health. And I will eventually.

Now down to the mundane things.

First, I got a "Power Port" installed in the right side of my chest, this morning. The port will make it easier to receive chemotherapy by injection. Rather than finding a vein with a needle in my hand or arm each time, one that has to last for up the 6 hours for the chemotherapy treatment, the port gives an immediate pathway for injection of the chemotherapy into my subclavian vein. The subclavian vein is located next to my collarbone.

My friend, A, drove me to Group Health Central early this morning where it was installed. I had to disrobe and don the ever famously attractive hospital gown, my blood pressure and pulse were taken, and an IV was inserted. The nurse on duty hit a nerve going in, so that was quite painful, and then the pump for the IV didn't work so that had to be replaced. I was not in a very steady state by the time they wheeled me down to lower level A for the operation. Luckily the fellow who did the insertion, was a real pro. He said he had done in excess of 500 of them in the six years he had been at Group Health. So even though I was tearing up at an alarming rate, I felt comforted. Especially when they added the sedation to the IV drip. The team that worked on me was very professional and it seemed I might not have been the first one to lose it in the pre-op phase...

The team worked smoothly to drape me. They used an ultrasound to see if they could reach the subclavian artery with the tiny catheter that is attached to the port. If not, they would have gone for the jugular (literally). Then, they created a one inch incision directly below the artery. And, using a continuing series of xrays to guide them (this is what I remember him telling me they were going to do before we started--I have to confess I was rather out of it at this point in the procedure, thank G*d), they first inserted a wire all the way down to my abdomen and then used it as the guide to insert the catheter into the artery. After the catheter was inserted, they withdrew the wire, positioned the port right below my skin, and sewed it all up. Now I have a 1-2" purple plastic triangular-shaped 'pincushion' in my chest about 6 inches below my shoulder. Phlebotomists and the oncology infusion staff can insert a needle into the port for either blood draws or chemotherapy, and always be assured of good access to my blood supply.

The chemotherapy drugs, when injected into the port, will enter the subclavian artery and mix with my blood which is in the process of flowing into the atrium of my heart. The atrium is not the active part of the heart, but more of a holding chamber. From the atrium, the chemo/blood mixture is pumped into and out of the ventricle of my heart; the right ventricle pumps blood into my lungs to be oxygenated and the left ventricle pumps the oxygenated blood out to the body through the aorta. I am assuming that the chemo will enter the left atrium and exit goes through the left ventricle, but I am not the expert here, so I may have gotten my right and left mixed up. Particularly because this is lung cancer we're talking about and maybe it will go directly to the lungs. I blame the sedative agents for my amnesia. I also bless them too.

I really don't know much more of what went on during the procedure other than I dozed off and woke up after all the exciting parts were done. My intrepid team told me it went just perfectly and I was wheeled back up in a haze to the 4th floor, where they kept me for observation and breakfast until 11 am, at which point I was discharged and my dear, patient friend, A, drove me home.

Second, I received a call this evening from Dr. F at Group Health, who is covering for Dr. N, while he is attending a medical convention in Colorado.

The Seattle Cancer Care Alliance Tumor Board met and discussed my case today. Dr. F talked with Dr. M, the lung cancer specialist from SCCA afterwards and here is where we are going:

There is too much disease in my mediastinum to do a mediastinoscopy. Apparently Dr. N thought a mediastinoscopy could remove the tumor as well as biopsy it, but Dr. M and SCCA et al were of the opinion that there would be too much danger that microscopic portions of the disease would be left in the mediastinum following surgery, and eventually spread again. The CT scan already showed the lymph node involvement, and the damage to the nerve of the vocal cords was already indicative of the presence of the tumor. Of consideration was that it was also difficult to get at by surgery.

Because a biopsy of the mediastinal nodes was likely only to confirm the presence of the disease that has already been diagnosed, the Tumor Board recommended that I go straight for treatment. They recommended chemotherapy first, followed by maybe surgery and then radiation. There is a less than 50% chance that I will be cured, but they think it's worth taking. Dr. M wants to aim for cure by using a combination of cisplatin and pemetrexed. This would be done in 3 (not 4) cycles of chemotherapy, once every 3 weeks. At the end of the cycles, or at 9 weeks, plus a week or two for recovery, they would do a CT scan. If the response was very good, then they would look at surgery to excise the remainder, followed perhaps by radiation. If the response to chemotherapy was good, not very good, meaning no further growth, they would drop the idea of surgery and go on to radiation.

There's a lot of controversy, Dr. F said, in the field of how to time the cancer treatment. The cisplatin/pemetrexed combination looks good together as a chemo modality but there is no data on how it mixes with radiation. Dr. F said that NCCN, the medical organization that develops professional practices for cancer treatment, recommends a combined chemo and radiation therapy using cisplatin and another chemotherapeutic agent known as etoposide, but that Dr. M thinks the regimen he has proposed would work just as well for me.

I will start the chemo not immediately, but next week, because they need to give me a shot of Vitamin B-12 a week before commencement to lower the toxicity of the effect of the chemotherapy on me. I also will need to start taking folic acid daily in the week before. I also will be taking a high dose steroid, dexamethosone, the day before and the day after chemo.

The second punch biopsy of the lower left lobe of my lung that Dr. M initially proposed, would be to see if the tumors had EGF receptors which, if so, would mean that erlotinib (Tarceva) could be used--but Dr. F said that erlotinib has not been shown to be curative. So if I want to go curative, it would mean doing the chemo/surgery?/radiation route.

The other news is that Dr. F went back over the PET scan with a radiologist today and I have a fairly large cyst on my pelvis coming off an ovary. It did not light up during the PET scan so it's not metabolically active, and probably only a simple cyst. But Dr. F wants to check for the presence of OCA 125 markers in my blood. This is indicative of ovarian cancer, but there can be lots of false positives with the test too, so he proposes testing for the CEA marker as well, which is an indicator of lung cancer.

After I return the loaner car to Carter Subaru and pick up my car (they were great about returning the car a day late as I was too woozy today to drive), I will be going to Northgate Group Health tomorrow for the B-12 shot and the various meds, as well as the blood tests that Dr. F has ordered. He is also ordering the vaginal ultrasound, which will be done at Group Health Central.

Finally, if my voice does not return after treatment, Dr F suggested collagen injections into the vocal cord. He said they could last longer than a few months.

My chemotherapy should start next Wednesday or Thursday. I am leaning toward Thursday because I would have the weekend to recover from some of the worst of it. I hope I got most of the facts here straight because it has been a long, tumultuous day.

Spezzato

"...Things fall apart; the centre cannot hold..."
-----William Butler Yeats


More mundane yet somehow aptly expressed by the foregoing verse of The Second Coming, there seems to be a piper to be paid these days, mainly for the sin of deferred maintenance.

The Subaru Outback (in Kentucky it is referred to as a "Sa boo roo") is in the shop for a head gasket replacement, among other things. It is 9 years old, so not too surprising. What was surprising was the range in bids on the replacement. $4,000 was the highest. I took it to 2 other shops before ending at Carter Subaru, the dealer where I had purchased it, and it is being done for substantially less, plus they have provided a loaner car, which is so essential. They did all this for me, Friday afternoon, when I called a friend of mine who worked there. She is a fellow soccer mom and quickly became the catalyst for such good care from them.

Then the washing machine, 7 years young, has been dancing a very loud, drunken jig, on the spin cycle for a few months. Her behavior went from bad to worse, when I discovered yesterday that she's also become incontinent. And of course she's part of a stacking duo and irreplaceable: there is no washing machine that will fit properly under the matching dryer, so do I replace them both or try for something I can put side by side? I hate to part with a perfectly capable dryer.

And finally, my multi cd player has gone rogue, refusing to play any of my cds, no matter how nicely I punch his buttons. As one who thrives on music, this is simply unacceptable, so it was hied off to the repair shop this past week and a half. However, in the pattern of repair persons everywhere, repair person has been on vacation so it will be some time before I learn whether to fix or to replace. My preference is to fix, but the modern consumer culture makes it much cheaper simply to toss the old one away and get something new.

These things come in threes. I am hopeful my triplet is finished

Second Movement

Yesterday I had an appointment with an oncologist who specializes in lung cancer at the Seattle Cancer Care Alliance ("SCCA")for a second opinion. One of the nicer aspects of Group Health membership is that they authorize and pay for a second opinion, and I took advantage of that.

I met with Dr. M and his oncology resident, Dr. O at SCCA. Before arrival, Group Health had sent over all the tests and results, and I had filled out a lengthy form, which SCCA had sent. I turned it over at the check in desk and was given a green sticker that proclaimed I had passed their "do you have a cold" test--everyone, including visitors--had to fill out a questionnaire concerning current symptoms before being allowed to stay at SCCA. Can not be too cautious when you have folks going through chemo all around.

The view from the waiting room, overlooking Lake Union, was tremendous, and probably very calming for many. Me? Not so much.

After a 15 minute wait, we were shown into a standard examination room, and first met with Dr. O, who asked additional questions and did a short physical exam. Dr. O asked if I had considered genetic testing given the history of cancer in my family and said that it might not be of assistance to me, but it would help my children. Dr. O then took her oral history notes along with all my test results/readings and questionnaire answers to Dr. M for consultation prior to his meeting with us.

Dr. M is tall, charming, and very direct. First, he asked me what I understood about my current condition. I gave him my two minute precis: lung cancer diagnosed 9/18/09, stage 3-B, course of treatment prescribed, etc. I then asked what he thought.

Dr. M responded that (and this is in no particular order from our conversation) he wanted to take my case, which he found interesting, to the SCCA Tumor Board and solicit their opinions on the best course of treatment.

The Tumor Board meets Tuesday next week (I've been saying Wednesday to friends, but a quick check of my notes shows that is in error). This includes oncologists and radiologists and Dr. M wants input from the radiologists whether to do radiology concurrent with or consecutive to the chemotherapy. Dr. M agreed with Dr. N that surgery was not an option to the lymph node involvement, and the desire to recover my voice which would mean treating the nerve to my vocal cord with kid gloves.

Dr. M also wants a second biopsy done to see if the tumor has EGF receptors:

http://en.wikipedia.org/wiki/Epidermal_growth_factor_receptor

If so, this would give them a reasonable chance of finding the original source of the cancer and it could also change the treatment modality, perhaps significantly. They could shift to a pill(erlotinib*, not gefitinib which is not approved for use in the USA) and not employ chemo. Dr. M suggested a second punch needle biopsy of one of the lower left lobe tumors using a larger needle to obtain sufficient tissue to do the biopsy. It could take ten days to receive the biopsy results. Dr. M also proposed a different chemotherapy combination, using a drug named pemetrexed instead of the paclitaxel, and perhaps keeping the carboplatin, or using cisplatin in its place. The pemetrexed would lower the possibility of hair loss but would increase nausea, and there would still be potential problems with neuropathy if cisplatin is used in lieu of carboplatin.

Dr. M was presently of the opinion that chemo followed by radiation was the correct course, unless the Tumor Board determines otherwise.

Dr. M thinks that a month ago the cancer was 3-A, but that taking additional time to try to figure all this out would not be too slow for starting treatment. At some point, I said that this shows why medicine is an 'art' not a 'science' and he gave me the look he said his 12year old daughter gives him when she thinks he's been goofy. Still, I think that at the outer limits, medical diagnosis is an art, perhaps informed by science, but still an art nonetheless.

Dr. M talked about using the term 'control' rather than 'palliative' if it was found that we could not eradicate the cancer. He said that if I had been diagnosed with AIDs in 1985, I would have been dead within 6 months, but now those with AIDs have a likely chance to live our their normal lifespans. My prognosis gives me 2-2 1/2 years on the pill, before recurrence of the cancer. Using chemo together with radiation, the intent would be curative.

So he recommended that I get the port installed in my chest Tuesday morning, and await the determination of the Tumor Board deliberations before starting chemo--likely Thursday. That left the biopsy question unanswered.

I asked him to call Dr. N before I had my telephone consult with himf at 4:40 that day, and he agreed to do so. I said it was my hope that he and Dr. N could work collaboratively on my case and asked him what happens when doctors disagree. He laughed and said it was not at all common to disgree, that he fully expected that they would be on the same page. When I returned home, I emailed Dr. N and mentioned that Dr. M was going to call him. He later responded via email that he had talked with Dr. M at noon and was looking forward to our phone conversation.

So 4:40 came and went. So did 5:00; 5:15, 5:30; 5:40. During this time I emailed Dr. N, I called his office several times and was referred to the oncology voice mail that stated the office was closed for the day. Now I operate on the belief that my word is my bond, and if I cannot reach a client or fellow attorney at the time agreed upon, I have my legal assistant contact them to let them know that things are running late. This did not happen. In fact when I called Group Health's front desk, after being sent to the closed oncology office, I hung up and called Group Health back, and the woman (once again she complained about not being able to hear me) said sharply, "This is the number I have to refer you to. I can't do anything else." This all too common lack of care with the Group Health administrative staff reduced me to tears. But luckily, I called the main number once more and this time spoke to a different, more empathetic main operator who must've heard my distress and agreed to page Dr. N, so he would be aware that I was waiting. She put me on hold for a while, then got back to me and said he was running behind on my calls and would be calling shortly.

At 5:50 Dr. N finally called. I had managed to put myself back together again, but I was not on top of my game for this discussion. Dr. N said that he had spoken to Dr. M and he was in agreement with his recommendations concerning the Tumor Board and the shift in chemo meds. But he wanted to talk with Dr. L, a thoracic surgeon at Virginia Mason, he had earlier mentioned, to see if he could do a mediastinal biopsy of the tumor growing on the nodes next to the nerve for my larnyx. He was hoping that it could be done before Thursday, but because he was leaving shortly for a weekend in Colorado delivering a paper at a conference, he was not sure if it could get pushed on through fast enough. Although, Dr. N thought a week's delay would not be problemmatic. Dr. N said that if the thoracic surgeon agreed to do this, VM would probably run my case through their Tumor Board as well.

You know at this point, I just want to say that women of my mother's age aspired to be pin ups, and women from my generation wanted to be centerfolds in Playboy. Well my goal in life is that I want to have my PET and CT scans reviewed by Tumor Boards. Don't tell Sarah Palin.

The plan, which is still not fixed is that the port will be installed on the right side of my chest on Tuesday and chemo will begin Thursday. Once Dr. N returns from Colorado I hope to take up the issue of the biopsy and settle that fully as well. But as Dr. M said during our second opinion consult, you don't want to use a tank to kill this if all you need is a rifle. I can get behind that opinion. And I can be patient a while longer if this means the treatment is more tailored to my situation and it gives me just as good a chance for remission/cure, as well as fewer side effects during treatment.

And I got an email from Dr. N apologizing for his late call.


*erlotinib is a drug marketed by Genentech--which merits a shout out to Fred, a college classmate, who is a research scientist for Genentech!! Howdy there and tell them to keep up all the good work!

Dentistry notes from all over

I had my teeth cleaned by an expert today. He really knew his business. It was over in less than an hour but by the end, I could really feel the difference. He was not too timid to scrape off the plaque, although it was not entirely painless. And he showed me that I have been brushing my teeth wrong for, oh, more than 50 years. Here's the deal. You don't want to approach your teeth with the toothbrush at a 90 degree angle. Rather it should be at a 45 degree angle. And scrubbing hard does not mean getting the job done. As he asked me, do you use a scrubber on your fine china? Ooh. That hit home. He also said not to use a mouthwash that had alcohol in it--too harsh on the gums, even when they are at their healthiest. Finally, he suggested doing my evening dental hygiene routine an hour before bedtime, so I am not crashing while I am brushing my teeth--I will pay better attention to the tasks at hand. And there are three that should be done in the following order: 1) floss, 2) brush teeth for 2 minutes or more at the 45 degree angle, and 3) rinse with the non alcohol mouthwash. If I manage to eat or drink something afterwards, he said I should just floss or brush again depending.

So nothing like upending a 50+ year habit. We'll see if I can do it.

He also told me about some of the travails of Dr. W, the specialty dentist. As I mentioned before her practice is focused on cancer patients but also patients who are waiting for transplants. In order to do a transplant, one of the requirements is that you cannot have a mouth infection and she works to make sure that her patients are 'clean' there and ready to go otherwise. But not so fast. She has had situations, where a $250,000 transplant, after years of waiting, has been approved by Medicare or the state or a private insurance provider. But they won't approve the $1,000 in dental work that is a pre-requisite for the transplant to take place. This is absurd. In some situations, she has (forgive the expression) eaten the costs and done the work without compensation, so that someone who had been waiting 15 years for the transplant could finally get it. Again, this does not make sense. It's being pennywise and pound foolish.

Being at the dentist twice in less than a week, sent me on a reminiscence of dental visits past. I grew up in a small town in northwestern Ohio and our family dentist was a very nice guy, but he didn't believe in anesthetics for fillings. I remember a number of fillings installed where he hit the nerve and I jumped rather high. It's amazing I didn't lose part of the inside of my mouth or worse as a result. I wonder if he changed his practice at some point.

I also remembered my torts class my first year of law school. Our professor, who was just starting teaching law, was a nervous fellow who had a tough time standing in front of the class and talking for 50 minutes. But he was discussing one day the doctrine of res ipsa loquitor which translates to "the thing speaks for itself." And the example he used to illustrate this doctrine was a story about a woman who went to a dentist's office for a major treatment of some kind, one where the dentist had to put her under general anesthetic while she was in the dental chair. He administered the anesthetic and she went under, only to wake up and discover that one of the fingers of her right hand was broken. She inquired of the dentist and was met with stony silence. So, she eventually sued the doctor for negligence, alleging that the broken finger was res ipsa loquitor of the negligence because obviously she was not being treated for anything other than something wrong with her mouth. At trial, on the witness stand, the dentist finally broke down and confessed that the anesthetic he had given his patient was one, that at times, would cause the patient's muscles to seize up as she went under. And when the patient went under in the dental chair, her hands had clenched and the right hand had caught his testicles in a vise-like grip that he could not release until he broke one of her fingers!!

The story was amazing, but the fact that it was told to us by this fellow who was probably the shyest professor I ever had, was all the more amazing.

Off to brush my teeth--the right, no, the 45 degree way!

Open Thread

The fun theory

Oh, the link attached to my title really made my evening. I hope that y'all enjoy it as much as I did. Now how do we go about making chemotherapy that fun? I'm thinking a portable DVD player and lots of Paul Gross or Hugh Laurie or Nathan Filion or Viggo Mortensen. I'm not too picky!

Tickling the Ivories

The specialty dentist, Dr. W, had room in her schedule today, so I went in at 2pm to have a dental exam and consult before chemotherapy next week.

Dr. W had me do a full x ray and then she measured my gum line for pockets and visually inspected my teeth to make sure there were none in need of new fillings or crowns. Although I have some deep pockets, particularly in the back, it looks like my mouth and teeth health are good to go for next week. I learned a number of new things:

* one of the fallouts of chemotherapy is mucositis because the mouth is a place where the cells are rapidly growing, just like the tumors in the left lower lobe of my lung. So chemo can and probably will cause shedding inside my mouth, and consequently irritation and pain.

* there is a mouthwash I can make from two over the counter items to numb the inside of my mouth. She gave me a prescription for a gel to coat the sides of my mouth before I eat when it gets too bad. She said ice can be used but to be careful, so I don't craze or crack the enamel from too vigorous ice chewing.

* eventually I will be unable to use my Sonicare toothbrush because of the tenderness, so she provided me with an extra soft toothbrush for those days. While I am still able to use the Sonicare, she recommended the smallest size brush because it reaches more places in the mouth.

* because the port for the chemotherapy they are planning to install in my chest next week will be below the skin, I will not need to take antibiotics before going to any future teeth cleaning appointments with the dentist.

* I should get my teeth cleaned before chemo, even though they were back in August, just because it is a good precaution. An appointment has been set for this Wednesday at noon.



To celebrate, I took myself to see Steely Dan at the Paramount Theater tonight. They performed their album, Aja, in order--all the way through. And if that was not enough, they then played some of my favorites from their albums over the years including "Do It Again (click on the title of this post to hear the recorded version)," "Show Business Kids," and "My Old School." They ended their concert with an encore, "Reeling in the Years." I could not have asked for more. I have never heard them sound better. If they show up near you, I can highly recommend them, even though the tickets cost an arm and leg. The music was absolutely first rate. And Donald Fagen told the audience that the Paramount was Steely Dan's first big venue back in 1972. They opened for the James Gang!

Improvisation

I think I'm on target about the connection of music with life. I've used some musical titles and analogies in here, and related it to what I am experiencing. According to the CNN article that is embedded in the title to this post (just click the title to read) music may promote healing even more than we have ever given it credit.

So, expect the analogies and links to music and song titles to continue.

Yesterday I learned something new. One of the possible side effects of the pending chemotherapy would be to my mouth--the mucous membranes might be affected and my mouth and surrounding tissues could become inflamed or sore. So I called my dentist, David, on Saturday. He's a good guy because he leaves his home phone number on the answering machine for emergencies and I left him a voice mail message. He called back promptly and said in fact his former partner had just spun off a practice that in part consisted of dental hygiene for chemotherapy patients and one thing I should think about is getting a dental exam to rule out any infections because undiagnosed, untreated mouth conditions could compromise my cancer treatment. So he will call his former partner to see if I can be seen this week before the chemo starts.

Then on to the practical preparations. My friend A and I helped each other clean out our refrigerators. I seem to recall that good Jewish households always clean out the pantry in the spring before Passover, and I have to say, after my experience yesterday, that is a good idea. There were a number of chemistry experiments going on under my nose (truly) that ended yesterday with our joint efforts. The fridge has not been that clean since I purchased it 4 years ago. And the dogs got a few not too toxic treats out of it.

The dogs also were treated to a walk around Greenlake today. My dear friend from work, D, called me and said, "Let's meet!" We've been walking around Greenlake for over a year as both exercise and as talk therapy as we try to hash out problems from the personal all the way to the national and international. We don't always get things solved, but it's good to talk them out. I relented and brought all three of my dogs (an aging black lab and two miniature dachshunds) with because I figured I could talk D into holding one leash for me as we rambled around the lake. And I brought the throw toys for the lab and the older dachshund as they both love to fetch in the water. It's a hoot to watch Scooter, the dachshund as he goes after his water toy because his legs are so short, he can't find his balance swimming, without using his tail as an air rudder. So the tail is flailing about madly as he paddles out and brings it back for another throw. He'd spent several years watching Max the black lab do it and get the lion's share of attention, and finally he decided that he could swim too, so now I have to throw for both of them when we go to the lake.

On the drive over to the lake, Truffle, the puppy, apparently could not wait and a huge rancid odor wafted up from the back of my Subaru station wagon. I thought at first it was passing gas but as the smell did not dissipate and in fact grew over time, I realized that I was SOL (so to speak) until I parked the car. It was bad enough to cause me to roll all the windows down and hope that I was not next to someone at an intersection for more than 15 seconds. I found a parking place, and then tied the dogs up while I tried to figure out how to clean out the back end because I was NOT returning to this mess after a 2.7 mile walk. Luckily, I had some windshield cleaner and some dried out cleaning towelettes for the leather upholstery, so with a little ingenuity and a plastic bag, things were good to go. The walk was beautiful with the sun dappling the leaves of the trees and warming the dogs after their vigorous swimming in the lake. D and I once again solved all our problems--if only every one else would do what we said!! I packed the dogs in the car and returned home. Only to find that the puppy had gotten car sick on the ride back!

Figures.

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

--Emily Dickenson

Unlike the Scarecrow of Oz

It appears that I have a brain. At least that is what the brain MRI I underwent today showed. It also showed no metastases. So a big Yay for Friday night.

An MRI is an interesting thing. Once again I couldn't have any metal on my body, so the sweatshirt with the grommets had to go, though I was given a heated light weight blanket to stay warm. I was packed onto a plastic platform connected to the MRI machine and my chest and arms encased by a wide cloth velcro seatbelt, and an open mask type of restraint for my head. The nurse gave me earplugs, placed disposable pillows between my ears and the cold plastic restraint, and put an iv into my right arm, so she could inject contrast dye into me for the last two MRI sequences. However, the first 20 minutes consisted of a series of MRIs that ran for varying periods, from 11 seconds to 4 minutes. Each MRI had its own distinctive resonance, some being deeper in tone than others, with most being a steady burst of noise and I actually fell asleep during most of the procedure (heck I was the mother of 3--I used to fall asleep at the neighborhood pool where there were loads of kids making far more noise than this machine). From time to time the bed pulled me out from under the MRI machine and then reinserted me, probably at a different stopping point each time so all areas of the brain could be mapped.

Before the last two MRI sequences, I was pulled out from the machine and the contrast dye injected. No noticeable effect like during the CT scan. Once again I fell asleep trying to remember some aspect of my days as a camp counselor at a camp named Camp Ladyglen in the early '70's in Grand Rapids, OH. Worthy of several posts on its own, but for me today, a wonderful soporific.

I was done and out the door and had to pass 2 hours before coming back for the next consultation with Dr. N, my medical oncologist who would read the MRI and tell me results. Took my dear friend and driver for the day, A out to lunch and we picked up the charm bracelet that was a group gift from my women attorney friends online at Delphi forums, and then was passed an enjoyable time visiting the Japanese garden in the Arboretum. Truly a pleasant afternoon, if you don't count the stress of waiting for the results.

Back to the meeting with Dr. N and he informed that I did have a brain and that it was clear of all metastases. Then we got down to business.

In response to my question about the New England Journal of Medicine article that I cited in my previous post, Dr. N explained that this study was done of palliative care and the cohort was Asian women. So there was some relevance for me, but not so much. In response to my question about why the recommended treatment now more closely resembled what he had initially proposed for the possibility of stage 4 lung cancer, he explained that my original radiation oncologist, Dr. C, was out of the office when the PET scan results came back, so he consulted with Dr. H and Dr. H was of the opinion that the treatments should run sequentially not concurrently. Dr. N said that once Dr. C was back in the office, he would consult again with him and once again the course of treatment could change. It could also change once I've obtained the second opinion from Dr. M at the Seattle Cancer Care Alliance. He stressed that he would be working collaboratively with everyone involved in my care and that it is and will be a fluid situation depending on outcomes. He recommends a ct scan after 6 weeks of treatment to determine whether there is shrinkage but he is not averse to doing it after 3 weeks, just doesn't think it will tell him much.

So, it looks like October 19 is D Day for beginning chemotherapy. I am also now scheduled for a procedure Oct 20 to install a port in my chest to facilitate the chemotherapy injections in the future. And there is a lung function test coming up plus some blood work, again as well. As I wrap up and turn over my cases to my attorney colleagues in my office, it seems that my dance card is not emptying out, but rather filling up with new sorts of appointments and deadlines.

The immersion is beginning. Let's hope that I can learn the steps required.

Do you have your seat belts on?

This is a cleaned up version of an email I sent the medically oriented members of my family and friends tonight.



The news was not so good today. There's not a clear path to take for treatment and each involves major risks.

The first option involves surgery, including checking the right mediastinal nodes for additional cancer (though the PET scan was clean there) while trying to dislodge the left mediastinal mass as much as possible plus a lobectomy for the left lower lobe. Then possibly on to chemo and perhaps radiation. In this case my GH oncologist, Dr. N, wants to use a thoracic surgeon, Dr. L, from Virginia Mason but that would take about 3 weeks, if lucky, to set up and get through the surgical process.

The other option would involve starting chemo Oct 19, after the second opinion on Oct. 15 at Seattle Cancer Care Alliance with Dr. M, assuming Dr. M agrees with this approach. But Dr. N wants to use carboplatin-paclitaxel for the chemotherapy, and the latter part of the chemical equation can cause neuropathy. Hair loss is assured as well as some other side effects There's another drug out there, geftinib, which has shown better long term results if the adeno carcinoma is positive for the epidermal growth factor receptor gene (EGFR) mutation, but we don't know that's what my carcinoma shows because there was not enough material from the first biopsy to test for that. So we'd have to do another biopsy, which I thought was a possibility, but Dr. N didn't bring it up today except as an afterthought to the major surgery path. The following New England Journal of Medicine article looks interesting. I sent it to to Dr. N tonight and asked for comment.

http://content.nejm.org/cgi/content/short/361/10/947


The proposed chemo would take 12 weeks, and be administered once every 3 weeks. Then possibly radiation, then possibly surgery. When we met with Dr. N the first time, this was going to be the course of treatment if I was stage 4. Stage 3 would involve a combination chemo and radiation on a weekly basis. I have put the question to him via email tonight: why the change?

I meet with him tomorrow again at 4:40 pm to get the results of the brain MRI which is to be done at 12:30. So there will be more info later. And of course if the brain MRI shows something, then it all goes back into the cocked hat.

I'm the kind of person who reads the ending to mysteries if they get too tense because I can't stand the uncertainty. I'm still trying to figure out how to do that with my life. So far, reading horoscopes is not sufficient.

Brain MRI moved up--UPDATE

There is no way that I can really take this at this point, but I got a call today from the MRI department at Group Health and the radiation oncology nurse that we met with last Thursday asked them to move up my brain MRI from Monday Oct. 12, to sometime this week. The only time they had available was Friday at 12:30. Could I make it?

I said yes.

Update: I got a call from my new nurse navigator, that I was offered last night in a phone call from Group Health. This is a new program where a cancer patient is assigned essentially an advocate within the system, to help navigate the bureaucracy and also to assist with personal issues. So in the middle of our conversation I asked her if she could view my PET scan results because I was feeling a bit insecure about moving the brain MRI up. She said, yes she had access to the file, would I like her to look at it? Of course, I said, which she did. And she was happy to report that the PET scan showed what was already there and nothing more. No distant malignancies elsewhere in the abdomen or pelvis. So that was the first good news I've had yet.

Small rejoicing going on right now.

The PET Scan

Note: The above is NOT my PET scan. It's just for illustrative purposes.

My PET scan was today at 12:30. My friend and co-program advisor, D, was very kind and drove me to the appointment in Olympia. It served a dual purpose as we could discuss work all the way down and all the way back. Major distraction, which I never ever anticipated would be the case with work.

Once there the folks at Group Health were reasonably prompt, although a PET scan takes more time to prepare for than it does to administer.

I had to not eat for 6 hours, in order to lower my blood sugar. More about why later. But this meant I had no food or coffee (the worst) from the time I went to bed until about 3pm. Reminiscent of fast days when I was a Catholic. I don't miss that part at all.

PET scan headquarters was a large shipping container parked in the back parking lot of Group Health. This PET scan is mobile and is driven to a different site--not just Group Health-- in Washington each day. The technician, Tim, told me he travels between 1100 and 1600 miles to administer the tests each week. I asked him if he drove the truck too, and he laughed and said no they had a driver who transported the PET scan to a different location each night. They do it at night because there was less likelihood of the truck having an accident then. Turns out he is from Pittsburgh and a Steelers fan, but I tried not to hold that against him.

Tim drew some blood to test to make sure that my blood sugar was low. It was 113 which is midway between the way low score of 50 and the high score of 200, so I was good to go. He then injected a dose of radioactive sugar along with saline solution to make sure it all got into my bloodstream. I asked if the dose of sugar would help my hunger pangs and stop my stomach from its very loud rumblings. He laughed and said that the amount of sugar in the injection syringe was 1/40 of a treaspoon of sugar so it would take a lot. The body, all of it, needs sugar to perform its functions. I thought of each organ having hands extended out grabbing the sugar molecules as they circulated through my bloodstream. If my blood sugar was high the hands would not be grabbing--there would be no uptake of the radioactive isotopes that showed up on the PET scan--so it was good to be hungry. This radioactive sugar shows up brightly on the PET scan, and the sites where more radioactive sugar has been grabbed, will show up more brightly than those that don't have as many grabby hands. Cancer is fast growing and needs lots of energy, i.e. sugar, so cancer sites are very greedy; they will show up brighter on the PET scan than sites that have not yet been invaded. Cancer is the physiological equivalent of the mercenary troops of the Holy Roman Empire which sacked and looted Rome in 1527 because they had not been paid by their immediate commander, Charles III, Duke of Bourbon. (Completely OT: Hella Haasse wrote a wonderful book about this titled The Scarlet City)

I had to wait 30 minutes to make sure the radioactive sugars were fully circulated in my body before they could do the PET scan so Tim put several blankets over me to keep me warm (they have to keep the unit very cold to make sure the PET scanner does not overheat), and left me with the recliner chair fully extended to relax. As if. I was briefly overcome, contemplating my own mortality, and Tim heard my sniffles over the intercom and came in offering Kleenexes. At that point, I forgave him his misguided football affiliation. (vbg)

Then my waiting was over and I moved to the room with the PET scanner. And here is where some advice to those who have yet to undergo this is in order: Make sure your clothes have no metal on them!!! I had to take off all my jewelry, my bra which had metal hooks and my fancy sweatsuit which had metal in the zipper of the top and metal on the ties to the pants. Two flimsy hospital gowns plus blanket were not much insulation. So that meant really really cold for the scan, which Tim said took 20 minutes and felt like an hour

And of course, when I was in position for the scan, with my arms above my head, I got a cramp in my right shoulder. Figures. I shifted it ever so slightly when the scanner was doing my lower torso and managed to maintain stillness for the majority of the scan. I even dozed off briefly. Finally Tim came into the room and announced that I was done and could get dressed. Which I did and then we waited for another 45 minutes for a copy of the scan to bring to Seattle Cancer Care Alliance, for a second opinion. Group Health offers this service, and I applaud them for it. SCCA is NCI approved and I've always been told that it is good to get a second opinion, no matter the operation/diagnosis. So now there is a copy of my scan in my briefcase, that I have only the faintest desire to open up and put in my computer (if it would take the disk, which it probably would not) to see if I can spot the bright spots. Uh...not so much. I will wait until Thursday when I meet with the medical oncologist for a followup. My daughter will go with me and either way, I know I will cry.


Now to curl up with a good book.

Divertimento

Well it's the night before the PET scan. Just like the night before the Bar exam, except this time I want to get a low score, not a high score. Reminds me of the Phyllis Schlafly cheer squad from the Doo Dah parade, which was an alternative to the Rose Bowl parade. Anyway, the cheer these cheerleaders would yell at the top of their lungs was, "Sixty nine cents is toooo much!" Sixty nine cents then being the average wage that women made compared to men.

And my co-program advisor forwarded this to me today as well. I thought it broke up the seriousness for a bit. Which I find I need because lately I've been crying a bit--more than I have since my divorce ten years ago. So here goes:

YOU KNOW YOU LIVE IN WASHINGTON STATE WHEN:

If someone in a Home Depot store offers you assistance and they don't work there, you live in Washington.

If you've worn shorts, sandals and a parka at the same time, you live in Washington. If you've had a lengthy telephone conversation with someone who dialed the wrong number, you live in Washington

If you measure distance in hours, you live in Washington .

If you know several people who have hit a deer more than once, you live in Washington.

If you have switched from 'heat' to 'A/C' and back again in the same day, you live in Washington

If you install security lights on your house and garage but leave both doors unlocked, you live in Washington

If you can drive 75 mph through 2 feet of snow during a raging blizzard without flinching, you live in Central, Southern or EasternWashington.

If you design your kid's Halloween costume to fit over a 2 layers of clothes or under a raincoat, you live in Washington.

If driving is better in the winter because the potholes are filled with snow and ice, you live in Washington.

If you know all 4 seasons: almost winter, winter, still winter, and road construction, you live in Washington

If you feel guilty throwing aluminum cans or paper in the trash, you live in Washington.

If you know more than 10 ways to order coffee, you live in Washington.

If you know more people who own boats than air conditioners, you live in Washington.

If you stand on a deserted corner in the rain waiting for the "Walk" signal, you live in Washington .

If you consider that if it has no snow or has not recently erupted, it is not a real mountain, you live in Washington.

If you can taste the difference between Starbucks, Seattle's Best, and Dutch Bros, you live in Washington.

If you know the difference between Chinook, Coho and Sockeye salmon, you live in Washington.

If you know how to pronounce Sequim, Puyallup, Abiqua, Issaquah, Oregon, Umpqua, Yakima and Willamette, you live in Washington.

If you consider swimming an indoor sport, you live in Washington.

If you can tell the difference between Japanese, Chinese and Thai food, you live in Washington.

If you never go camping without waterproof matches and a poncho, you live in Washington.

If you have actually used your mountain bike on a mountain, you live in Washington.

If you think people who use umbrellas are either wimps or tourists, you live in Washington.

If you buy new sunglasses every year, because you cannot find the old ones after such a long time, you live in Washington.

If you actually understand these jokes and forward them to all your Washington friends, you live or have lived in Washington.

Think No. 3!!

Movement

"Change means movement. Movement means friction. Only in the frictionless vacuum of a nonexistent abstract world can movement or change occur without that abrasive friction of conflict. " --Saul Alinsky

Group Health called this morning at 8:38 am to tell me that the PET scan was approved. I am driving down to Olympia tomorrow and it will take place at 12:30. No solids for 6 hours before.

I'm not sure what worked, but I'm sure part of it was all of your good thoughts. Pat yourself on the back for a job well done.

Thank you.

This is why it's such a big deal

I finally decided to see what the big deal was about stage 4 lung cancer. Click on the title of this post and you can read for yourself.

So let's all pray/hope/imagine seriously that it's stage 3B.

Question for my loyal, but shy readership

Does anyone know how I can upload a music file to my blog? Consider that I am a luddite to this and respond accordingly.

Thank you.

Girls, Jump Rope and Sports

If you'll click on the title of this post, you will be directed to the web site for the King's Firecrackers, a middle school jump rope team. At the bottom left of the page is a video of their performance at the US Naval Academy. Amazing and thanks to Joe K for the tip that took me to their website.

When I was a child, attending Spencer Elementary School in Defiance, OH, exercise was really not emphasized with girls. At recess we had kickball games that were coed. I was always one of the last to get picked along with Butchie Raabe. And the standing around games for girls were 4- square, some plain jump rope and dodge ball against the side of the building. But by the 6th grade, when we would line up in two rows, boys in one, girls in the other, to go back into Mrs. Stratton's class, the girls were singing "We love you Beatles, oh yes we do. We love you Beatles. And we'll be true. When your not with us, we're blue. Oh Beatles, we love you." Boys and clothes and hair and makeup were starting to become more important than getting dirty playing outdoor games. We didn't have jump rope teams, but you could become a baton twirler and wear fancy white boots with tassels. My mother would have thrown me to the wolves had I asked to do that.

In junior high and high school there was no recess. There was gym. I hated gym. In addition to being around girls in the showers which I was mortified by because everyone else had boobs and I didn't, there were things like cartwheels which I couldn't do (that automatically deducted me from trying out for cheerleading), and basketball was played only half court. I was automatically assigned the defensive half of the court because I couldn't shoot. And I continued to be picked last for competitve games at girl's gym too.

Eventually I learned how to play a bit of football because these guys from Bryan used to drive down and visit my very good looking friend JoAnn and me, her less good looking friend. My dad had purchased a pool table, and we would spend weekends playing pool and going outside and playing tag football. The guys taught me how to throw the football. I was looking forward to the powder puff football game traditionally played between the junior and senior girls in high school. Flag football. But when I became a junior, the game was called off by the School Board. They determined that it was too dangerous for us girls as we could injure our reproductive organs. US???? What about guys, I wondered? Aren't their reproductive organs a little more 'out there' so to speak? But, because my father, my PEDIATRICIAN father, was on the School Board, I didn't talk back or ask any questions.

At college there were competitive women's teams in tennis and perhaps one in swimming, but without a background in sports, I had neither the interest or ability and so did not sign up. I can recall swimming in the college pool (which was really rather gross--Shaw tub it was called) once, to collect on a bet from my then-boyfriend that I could actually swim a mile. My parents had belonged to the country club in Defiance, and in the summers I would ride my bike to the pool and hang out, vainly trying to get a tan to be cool. I picked up swimming almost as an after thought and spent one or two summers in junior high on the swim team. The only time I received a ribbon, was when there were only 3 girls swimming in my event. But somehow I managed to obtain my lifeguard certificate, so unbeknownst to the boyfriend, I really could swim a mile! I think it got me a dinner at the Chanhassen Dinner Theater.

It was not until my last year of college, that I started understanding exercise and sports added, rather than subtracted something from your life. During interim a group of friends formed a volley ball team (the Kirk Carousers) and we got the crap beat out of us regularly. But our broomball team, the Bharath Special Beedie Works, won the Intra Mural Championship. Somehow ice hockey played with brooms and a soccer ball and no skates was a levelling experience--we actually beat the team composed of members of the football squad because they could and did fall as much as we did, and harder too! Rather than a trophy, each team member was awarded an orange tshirt with "MAC IM Champ" emblazoned on it. The early '70's version of a letter jacket. They were items of pride, worn often. I still have mine, ratty with small holes throughout. I took it back for the class reunion this year and wore it when I participated in the fun run Saturday morning.

College was my first real glimpse of what exercise and sports can do for women as well as men. I went on in the limited time I had left there, to be on a women's full court basketball team, take tennis lessons and join a soft ball team (Chastity and the Belts). Not until I joined an adult swim team some twenty years later, did I ever participate in sports so fully.

I am glad that opportunities for women in sports have expanded as a result of the successful Title IX lawsuit against WSU for not fully funding women's sports, brought by the Northwest Women's Law Center in the early '80's. I am proud of my small work for the Law Center as a volunteer, and on the Board,which helped sustain their mission. And I am so glad that my daughter, when she grew up, was on a soccer team for ten years, and high school tennis and swim teams. These were opportunities beginning in kindergarten, to develop friendships with other girls that involved teamwork, not cutthroat competition. Something I only began to learn in college.

Group Health roadblocks up and functional

This is a feature not a bug.

When we met with the oncologists yesterday, they told us that I needed a PET scan and a brain MRI so that they can stage my cancer appropriately. And, if it is below a stage 4, then they will biopsy more tissue to try to put together a chemotherapy regimen that is targeted to my particular cancer.

It seems obvious, that a PET scan is required to put this plan into its first steps. And that the longer one waits, the more time the tumor has to grow, divide and perhaps migrate in search of more, friendly host sites. So, one might think that speed would be of the essence because you would want to get the information quickly to start treatment and stop the process in its tracks.

You would be wrong. The only process that counts is the administrative process within Group Health. This administrative process is in place to somehow make sure that my doctors are not lying their asses off and that in fact I do merit a PET scan. And after a number of calls to Group Health throughout the day to inquire, I was told at 4:15 pm for the first time, by the same person I had been talking to all day, that this process generally takes 2-4 business days at a minimum to be approved. My 'relationship' with this individual got off to a rocky start during the first call, when this person rather impatiently said, "I can't hear you, can you speak up?" I yelled with all my might, which brought my whispery voice near to cracking, that I could not speak up, that I had lung cancer causing this and that I needed the PET scan stat.

Some good that did. I suppose I could complain to the Insurance Commissioner's office. I have a meeting Tuesday in my offices with the Deputy on another matter. How frakkin' ironic.

Not a good day.

A Small Ray of Hope

Met with the radiation oncologist and the medical oncologist today. It ran 4 hours and was, without a doubt, some of the most intense focusing that I have done in my life.

In summary, this is what I took away from our meetings.

The doctors do not think that the spot in my upper left lobe is a tumor. They think it is too regular and round in form to be metastatic. This is good because it means that then there are only two tumors in the lower left lobe, plus lymph node involvement at the mediastinum, resulting in a preliminary diagnosis of stage 3, B cancer (out of 4 stages). But I need to have a PET scan, which is a full body scan, following an injection of radioactive sugar solution into my body, viewed on a type of CT scanner. If there are areas of fast growth, ie tumors, they will show up brighter on the PET scan than other areas. The doctors are looking at throughout my body, including my bones for possible sites for metastasis.

Then a brain MRI to rule out brain involvement. The brain is going to show up on the PET scan according to my daughter, because it is active all the time, so the PET scan results can't be relied on there or in the kidneys or the bladder (which is different than I originally wrote here--good thing she's on top of this!). They did some physical testing today to measure basic brain function, which involved standing on my feet with my eyes closed, then standing on one foot and then the other, and I passed with flying colors there. But of course that is not definitive.

If there are no other areas that indicate cancer, then I am stage 3,B and they will next do a mediastinal biopsy of the affected nodes to get a better read on the exact type of cancer it is. This will help them devise a chemotherapy protocol that is more closely tailored to the type of cancer that I have.

And after that, next comes treatment. This would be 7 weeks of radiation and chemotherapy. It would be a big hit to me, but the end goal is to put the cancer in remission and maybe ultimately cancer free.

If there is metastasis in other parts of my body, this would put in me in stage 4, and that would mean a further biopsy is not necessary and that only palliative treatment would be indicated. They would be trying to keep me stable and not get worse, in other words. At that point, I would consider more experimental treatments or clinical trials, because I would have not much left to lose. The doctors have no problem with me seeking a second opinion from either within or outside Group Health. Of the 4 folks that we met with today, I was very impressed with the knowledge and skill of the physicians and the radiation oncology nurse. When you are good at what you do, you don't mind if others are consulted on their opinions.

We will deal with this as it comes up. The brain MRI is set for October 12 and the PET scan will either be Monday or Thursday of next week. Once again, patience is indicated. Of which I have less and less.

The prognosis after 5 years seems to be around 20-25%.

Life on the edge. What a concept.

A Different Sort of Surprise

This evening, I got home after a very long day at the office for me--closing old cases, getting ready to transfer those that have not gone to hearing or trial to other attorneys who can handle them during my absence, which is still not really determined. And spending two hours in a meeting to deal with the problem client. I drove into my driveway, stepped out of the car and went to my p.o. box on the street to retrieve my mail. Now my front porch is small and you enter it from the side, so it was not until I was going up the stairs to my doorway that I saw that my porch seemed to be completely covered in white packages.

For more than ten years I have been in contact on the internet with a group of women attorneys from all around the United States. We have been there for each other through divorces, child rearing problems, pets, and health issues, just to mention a few topics of sometimes intense and spirited discussion. When my cancer was diagnosed, they were some of the first folks that I told. I put it in our weight loss files.

Well, almost immediately after that, it seems that they all got together and came up with a plan to each send me a charm with one woman (probably the ringleader--you are so great Mel!) sending me a bracelet to put the charms on so I can wear it while I go through my cancer treatment-- a visible symbol of their love and care. It was amazing and humbling to experience this. And although we have chatted regularly for over a decade, some of us have never met face to face! But through the years, via the internet we have become good friends.

In addition, there was a box of fresh Hawaiian papaya (didn't open the box til the morning after) from a dear friend in Honolulu there too.

What gifts. I am truly blessed. Thank you all.