Thank you Katie Couric!

Jane Brody gets it--Lung Cancer does not always occur in smokers

Thank goodness someone in the national media is taking notice.  This is the first part of a two part series by Jane Brody in the New York Times. Thanks to my friend Jane who pointed it out to me.  The money quote for me:

As for nonsmokers who get lung cancer — about two-thirds of them women — Dr. Schiller said they “are a disenfranchised group that did nothing wrong, yet women with breast cancer get all the support and empathy.”


“It’s a sizable number of nonsmokers who get lung cancer, more than get leukemia or AIDS,” she went on. “If lung cancer unrelated to smoking was listed as a separate disease, it would be the sixth or seventh most common cause of cancer deaths.”

Smoking-related lung cancer typically strikes older people (the average age at diagnosis is 71), but it often afflicts nonsmokers much earlier, in the 30s and 40s or even younger. And because doctors rarely suspect lung cancer when people who never smoked develop respiratory symptoms, the disease is typically diagnosed too late for any hope of a cure.

To be honest, I have a 4.5 pack year smoking history, but because the last time I smoked was almost 30 years ago (October 25, 1980), I am considered a non-smoker.  Not a 'never smoker' but a non smoker.  I just thought I should set the record straight as to my own status.

Update

I had my next monthly checkback with my oncologist this past Thursday. Previous to that I'd gone into Group Health's downtown office and had a blood draw. She only took two vials worth but I didn't inquire. But by the time of Thursday's appointment it was clear that no CBC (complete blood count) had been done. My symptoms of late have been mostly same ol' same ol'. Meaning not much of a voice and in fact it seems to be going a bit downhill. Newer symptoms were a persistent dry cough and increasing breathlessness upon what, to me, used to be slight exertion (read: walking back to the office from a Board hearing in Pioneer Square which entails going up one of the Seattle hills Garrison Keillor joked about in his broadcast of Prairie Home Companion this past Saturday at the Paramount Theater in Seattle).

So the oncologist put in a new order for a blood draw and ordered a chest xray. The next ct scan is set for the end of April. I had inquired about additional surgeries to try to repair my voice further, and to remove the 9cm cyst in my pelvis, but Dr. N thought that it would be best to wait til after the ct scans to see where I truly was with respect to the lung cancer. My daughter, who was participating with us on our phone conference, agreed that this seemed the best plan.

Friday I went to Group Health Central for the blood draw, to pick up my next month's supply of Tarceva (which seems to still be working as I've developed acne on my legs--if you can believe it?), and to get my chest xray. Afterwards, while I was waiting for my youngest son to pick me up, I received a call from my oncologist telling me that the chest xray showed everything was the same. Which was good, but I admit to being a bit disappointed. I wanted things to continue to shrink, dammit. He also told me that he was leaving Group Health effective the end of this week. That was a bit tougher to take. In fact despite all of the issues that I had with him in the past 4 months, I felt that we had reached a really good place in our doctor/patient relationship. It's slightly (ever so) like breaking up a marriage.

Family is doing fine. Sarah, my oldest, finished her surgery rotation at the VA and drove to Pocatello, ID on Saturday where she will be on a pediatric rotation. She decided surgery was not her bag. I think she will enjoy pediatrics. It was a 12 hour drive and there are no direct flights there, so luckily she is spared a parental visit, though it would be fun. We went shopping last weekend, which is unusual because she hates to shop. But she put up with me and was rewarded for her patience with a dress and skirt from Anthropologie. It reminded me of going shopping with my mother when I was a kid for an Easter dress. And I am definitely an old fart now, because I just don't get the current fashions for clothes. But everything she tried on looked lovely and I hope she has a marvelous Easter in a new place.

Oldest son Seth has decided that teaching is not for him and after the school year is ended, will be moving from Rhode Island back to the Twin Cities. He's going to go to the Univ. of MN to pursue, eventually, a graduate degree in engineering. He's also flying to Kentucky in late April to join me and one of my sisters, in a visit with my mother in Lexington. He's a very good kid to do this.

And the youngest, Matthew, is working part time at two city indoor pools in Seattle and attending North Seattle Community College. He recently moved into a house with four other young people and the next step is to get him his own transportation. It is getting a bit old to share my car with him. Though, of course, he seems to like it just fine!

The dogs are good to me. I haven't been up for much dog walking lately, and know that should change but the usual stern talking to that I give myself isn't working yet. The little one, Truffle, has learned not only how to use chairs to climb onto the table, she can open containers. I've lost a tub of parmesan cheese, a package of Cadbury easter eggs (foil too!) and this morning she got into my purse and made off with the chapstick and a plastic round filled with Ice breaker sours! Obviously she needs to be run and run hard. So time to gear up for spring and dodge the raindrops...

A happy Monday to all.

Lusting after NED

Wait, this is not what you think (but it does make for a snappy headline, eh?)!

NED stands for "No evidence of disease," and is an acronym that I only recently learned about on a website composed of lung cancer patients and their close friends and family. It's like getting an 800 on your SAT scores--rare enough that those who attain this coveted status are held in utmost regard. They give the rest of us hope, whether realistic or not. Maybe someday I can announce to the assembled that I am "NED" too.

However, it's still a status that is far too elusive for my cohort. A member of this site (you have to sign up to enter it) promised to send other members a copy of the National Cancer Care Network (NCCN) 2010 clinical practice guidelines for lung cancer. I requested and received a copy and it is a most detailed look at the staging of lung cancer and the treatment options for each stage of the disease process. Dr. M from Seattle Cancer Care Alliance, who was my second opinion oncologist last fall is listed as one of the lung cancer panel members. But at the end of the practice guidelines is a listing of cancer suvivorship rates. At the end of 2000, according to this document the survival rates for the following cancers were estimated to be:

breast cancer..........2,197,000
prostate cancer....... 1,637,000
colon cancer..........>1,000,000
lung cancer.................340,000

Contrast that with the fact that each year over 166,000 people are diagnosed with lung cancer--more than all the other three combined, and again the conclusion is inescapable--research into curing lung cancer is not a priority for the medical community at the present time. Some doctors believe that the tobacco industry has some responsibility for this state of affairs. Those who make cigarettes and cigars do not want the full facts on this to be disclosed because it might drive customers away if they were made fully aware of the terrible toll tobacco exacts. In fact one oncologist I know fully supports raising the tax on tobacco to confiscatory levels. Me, I just prefer a Susan G. Komen "Race for the Cure" approach, with lots of participants and lots of publicity, with the spotlight fully focused on the numbers and the money involved, and exactly what happens when you get diagnosed with lung cancer.

If more folks could be persuaded that indeed, they are at risk for developing lung cancer, and that major new research into diagnosis and cures is warranted, then perhaps an inexpensive early warning test for lung cancers could be invented that could be a regular part of everyone's annual check ups. Kind of like a kinder, gentler, more frequent colonoscopy. Most lung cancer is not detected until it is at stage IV, the last stage, where it has metastasized to other parts of the body like bones and brains. Very difficult to treat and cure at that point.

Well, I'll climb down from my soapbox for a bit just to give a personal update. I had appointments this past week with my oncologist and the otolaryngologist who did the injection into my vocal cord. The news was 'meh.'

My voice has not fully returned, nor will it with just this operation. The ENT doctor said that for the operation to have completely restored the vocal function, the injection had to have made the paralyzed cord come out exactly halfway and be completely smooth and straight for the functioning cord to close the gap just right. He can get closer to the ideal, but it has to be a more invasive surgery where he does an incision on my neck. And given that we do not know if the Tarceva is working, and will not until my next CT scans, which are set for February 25, he suggested that I be content with what I have for now and save my strength for the bigger battles ahead. So that is the plan.

My oncologist informed me that the pathologist never did the test on the last biopsy that would have determined whether my lung cancer has the EGFR mutation that makes it particularly susceptible to Tarceva. Apparently it is an expensive test--$700+-- and Group Health is not wild about it as a result (I am working on a mini rant about Group Health and money, but will save that for another time). So we are going on a wing and a prayer here with the selection of this as second line treatment. There is some evidence that one does not need the EGFR mutation to succeed on Tarceva, but that is an even slimmer percentage again. So we are left hanging on to hope, and waiting once again.

And dreaming of NED.

Dana Reeve

My friend, O, in San Rafael, CA, mentioned Dana Reeve to me in an email tonight. It was a story that I may have read, but forgot about since three and a half years ago, it held no significance to my life. That was then and this is now.

Dana Reeve was the widow of Christopher Reeve, the actor who embodied Superman to a generation. She valiantly tended to him after his tragic horse accident rendered him a quadriplegic. He died in 2004, nine years after his accident. She was diagnosed with stage IV lung cancer in 2005, dying in March of 2006, days before turning 45. She was a non smoker. Her sister, a pathologist, wrote an essay about her for the Summer, 2007 issue of Cure Today.


I'm not sure how much further we have come in the treatment of this disease in the intervening 3-4 years.

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!

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.

What I would not give for a good solid burp

When you have a paralyzed vocal cord, the opening to your lungs is always open. So you have to be careful while eating and drinking that you don't get any solids or liquids down the windpipe. Generally it is not difficult. In my case it is the left vocal cord that is frozen, so when I'm drinking I turn my head to the left to close it off a bit more and avoid water going down the wrong hole, as we so blithely proclaimed during childhood.

But one of the problems with having it open constantly is that for some reason I cannot get a good burp on. And I rather miss that. It kinda hurts to burp and sometimes it feels like a pain in the chest as the gas expands and slowly drifts out. Now if I were a worrywart, I could've taken myself to the emergency room last night when the chest pains became significant. But there were no other symptoms like a racing pulse and I had just eaten a Thai salad with lots of cabbage so....What I found helpful was to take the dogs for a walk. A little movement eased things significantly. But in the end I'd still like a good solid burp. It's like putting a period at the end of a sentence. All I got are commas right now.

Damn.

Postscript: When complaining about this to my daughter, she confessed that at the dinner table once, she and her two younger brothers burped out the alphabet. They could do every letter except "W" which was left to my oldest son. I suppose his long career on swim team and water polo gave him the edge there. Which weirdly fits in with the birthday card I am sending him for his 23d next month. It reads: "You know son, when you were just a baby, I remember burping you." The inside reads: "Now that's just one of the many things you do on your own."

And well too, it seems.

Digging for Gold

The biopsy.

To do a biopsy on a lung is rather different than doing a biopsy on a more stationary organ. The lung moves constantly. That's its job, inhaling and then exhaling; without we suffocate. So nothing stays still unless you will it. And even then you can hold your breath and your lung is in one position and hold your breath a second time and the lung has moved ever so slightly yet putting the tumor out of reach of the needle that is poised to retrieve some matter from it. In addition to moving in and out, your lung also moves up and down the stationary rib cage, so you have another shift that the doctor has to account and adjust for in a successful retrieval. This tumor measures less than 3cm by 3cm so even though that sounds huge to me, it is rather slight for purposes of capture when it's a moving target.

I learned this after we showed up at 6am to the hospital and I was checked into a day room where I disrobed for the procedure, was given an intravenous shunt on top of my left hand, hooked up to a saline drip, and waited. Luckily C, my ob/gyn, who has delivered all three of my children, and who has become a good friend was there to greet us and engage in small talk with my daughter and me, which was reassuring and helped pass the time. Eventually I was wheeled down to level A for the procedure. At some point I met Dr M, the radiologist in charge of the procedure, who was very highly recommended by my ob/gyn. He explained both the process and how the working of the lung made it difficult. He told me that they were going to try both ultra sound and ct scan to visually locate the tumor and then shoot it with the needle punch. He fired the needle punch for me so I would know what it sounded like and then a sedative was added to my drip, but not so much that I would fall asleep as that would negate the process because they needed me to be alert enough to hold my breath.

Dr. M began by numbing the section of the back that was going to take the needle. It took 4 stages to completely numb the area, as he went into the surface tissue first and then into the deeper skin levels with the anesthetic. Then they used both the ct scan and the ultrasound to look into my lung and locate the tumor or growth. The ultra sound did not seem to be providing a clear enough image so they gave that up and positioned me in the donut hole of the ct scan machine. Then I was instructed to breath and then hold it. When Dr. M was prepping me, he said not to take a big breath like I would if I were singing, but to take a normal breath and then hold it. I probably took a breath and held it for them at least twenty times. First they had to mark where it probably was with an 'x' on my skin, then I had to take a similar breath so it showed up in the right position so that the needle punch could take a core sample. At one point Dr. M said, "we're almost there," and then of course my breathing went all off base, so we were back to 4-5 rehearsals, and without warning, he stepped in and >bang< it was done. The ct scan showed the needle going into the tumor and he was quite certain that he had retrieved the desired matter. Which, he then told me was a good thing, because if he had had to do additional needle punches, the danger of lung collapse increased greatly. It was a little like putting a small hole in a balloon.

So, he showed me the material which was a tiny whitish thread held in clear liquid preservative. The nurse and tech cleaned up the punch site, which turned out to be right below my left shoulder blade. That was rather a shock because I thought our lungs were much longer. And then I was whisked upstairs in the new gurney by a wonderfully polite orderly, where I visited again with my daughter and C, and then slept until they took me back to level A to x ray my chest to see if the lung had caved in. It had not so I was taken back upstairs for another hour or so of wait time and then a second chest x ray.

They had given me dilaudid for the pain, and at some point after the second x ray, I became severely nauseous as a result. Apparently it is a common side effect of opioids. That held up my discharge for a bit, but I was home by 1:30pm.

Now we are waiting again. First for the biopsy results, then either for more tests and eventually for a meeting with the doctors to determine a treatment protocol. I am assuming that this is cancer because of the growth on my vocal cord that has reduced my voice to a whisper and barred me from singing was identified on the first ct scan as a metastasis. What they are trying to do right now is learn where it metastasized from. But if by some miracle, they were to tell me that there has been some screw up and it is all benign, I could live with that. Right.

On to more waiting!! My favorite.

I remember as a child not being able to sleep Christmas eve and getting up and taking apart and putting the wind up clock in my bedroom back together. But quietly so I wouldn't wake my younger sister. Right now, I'm looking for something similar that will last longer and it could even be slightly noisy. Have not found it yet.

Health care reform up close and personal

I've written a couple of posts lately about health care reform in the abstract. It's rather easy to do when it's all hypotheticals. Imagination is a wondrous thing--you can get a frisson of fear by thinking of taking up skydiving, but you don't have to go through the actual leaping out of the plane. Same with all those poor people who get sick and what do they do with their jobs and how can they afford this?

Well, I am about to find out firsthand. In the middle of August, my voice started going. That was odd. I had just spent a week at a music camp for adults, singing my lungs out in large and small groups and generally getting jazzed at being with people from all different walks of life doing one thing we loved so well--music. So at first I attributed it to vocal exhaustion.

It didn't get better. It got worse. So then I attributed it to a nasal inhalant I had been taking to relieve allergy symptoms. Stopped taking the inhalant. It got worse. I was reduced to sounding like Marge Simpson only softer.

Four weeks into this, I hauled my butt into Group Health one Sunday afternoon to be seen. The physician's assistant on call that day did a full blood workup and looked in my throat and found nothing remarkable. He suggested that I make an appointment with an ENT. So I called my AP's office the next day to see if she would do a referral. Found out I could self refer. That was a good thing. But that was it for good things.

An appointment with an ENT was made for Wednesday afternoon. Dr. H anesthetized the back of my throat and put a scope down through the nasal passage to the vocal cords. "Say 'eee,' "he said. I complied. "Say it louder." Once again I tried to increase the volume. "Your left vocal cord is paralyzed," he said. He told me that he didn't know the cause but was scheduling me for a CAT scan first to rule out cancer. "It's been 5 or 6 years since I've seen one of these cases where it was caused by cancer, but we should get that out of the way first," he assured me.

So a week later, I was back at Group Health for my first ever CAT scan, with contrast dye. When they inject you with the dye, you get a metallic taste in your mouth and it feels like your are wetting the table. You are not. They injected me twice for two different CAT scans.

Friday at 9am I returned to Group Health for the results. Well, I beat Dr. H's odds. The CAT scan picked up 3 distinct growths in the left lung--two in the lower part and one in the upper lung. It was the upper growth that was pressing on my vocal cord and causing my symptoms. It also appeared that this growth was a metastasis from another, a primary site. Dr. H inquired about family and friends who might live nearby and whether I was a member of a church. When I indicated that I was, he responded, "That's good. They will help you as you get your affairs in order."

So, here we are. On a new, completely unexpected and frankly unwelcome journey. But, because we have this raging health care debate going on in our country right now, and as I am a member of one of only two medical cooperatives in the nation, perhaps my journey can provide some insights into this highly political charged issue. I invite you to come along for the ride.