Progression Notes

I went to see my oncologist for my monthly visit.  Blood work was fine--that was perhaps the only good news. 

I have an increase in certain symptoms, which indicate that the cancer has possibly spread to my brain.  Chief among them, frequent headaches, especially in the morning.  The symptoms are readily treated with NSAIDs  but they keep coming back (like right now).

Neuropathy on the bottom of my right foot and two more painful growths on my scalp, as well as an increase in the pain in my left upper shoulder where we suspect a cancerous lymph node lurks right above my jugular vein (which makes it inoperable).  I also now have a pleural effusion in the lining of my left lung.  That means fluid in the space between my lung and my body, which has affected my breathing capacity.

Oh, and my oncologist thinks I have an outbreak of shingles on my face.  And here I thought it was pimples.  They had to disinfect the room after I left, it's considered dangerous for those with cancer.  But  no direct connection to the cancer.  It should take another 7-10 days to clear up.  Until then it's back to the lovely appearance I sported when taking Tarceva.  Damn.

So, I am scheduled for a brain MRI first thing this Thursday morning.  My daughter is home visiting for a few days, and she will accompany me, but then must fly back to Minneapolis where she is finishing the first of her four year residency in internal medicine and pediatrics. 

Finally, it seems that folks did not see my post about the fact that the surgeons did not install an esophageal stent a month ago.  At first the widening that they did seemed to work, but I am back to having a hard time keeping food down.  It's a wonderful weight loss regimen.  I am down two sizes and back at a weight I haven't seen since pre-kid days.  I would not recommend it, however.

Thank goodness for friends, kids and Downton Abbey.

Science project--why organic.

Mad props to Nancy Nall for posting this on her must read blog. 




I have had so many friends diagnosed with cancer recently, I can't help but wonder about our indirect consumption of chemicals as a catalyst.

A Medical Student Battles Cancer

I thought this article was so interesting that I wanted to pass it on to you.    Health care reform has made a start, not perfect but it is a beginning, albeit fragile.  We could lose this all with a change in the majorities in our Congress this fall. 

When words are badly used

I went to a St. Patrick's day celebration Wednesday at a downtown law firm. I've been invited to this party for almost as many years as the firm has been in existence. I knew the founding partner when he initially set up his first firm back in 1981 and the economy was so hard, he went for 5 months without being able to pay his mortgage. But with time, all of our circumstances have changed. He and the other named partner in the current firm are very successful litigators with a thriving practice, and they share their good fortune and their joy with their colleagues every year.

I wanted to go to the celebration but I dreaded it as well. It is not easy to see folks for the first time since diagnosis and tell them of your status. I went early before the bagpiper showed up, so I could be heard.

As it turned out, when I got there, I first saw another attorney who works in a separate division in my own office, who I also had not seen in quite awhile. We exchanged greetings, and her immediate response to my changed voice was, "Are you dying?" She probably thought I was recovering from a bad cold and being cute, because when I explained that, no, I had lung cancer, she became embarrassed and very effusive in a somewhat uncomfortable way. And I ended up comforting her. Which is exactly how it felt, and what I did when I told Bob several minutes later that I had cancer. It so wore me out emotionally, those two encounters, that I simply had to turn around and leave the celebration. And I'm still trying to sort it out and deal with the unintended, yet difficult emotions that sprang up as a result of those interactions.

I wasn't going to write about this directly because, again, I think that I prefer to put a happy face forward to you, my dear, silent readers. But, that is also taking care of you, not me. I read an article on a NYT blog this am, steered there by a fellow cancer sufferer on www.inspire.com. And I want each and every one of you who read me and are a friend of mine to please read this article. I'd like to post it in its entirety but cannot figure out how to contact the author and obtain permission. So in its place here is the cite:


http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/

Please read it. It deals with how we have, by our timid and shallow use of language and communication, shortchanged all of us as we confront cancer and dying.

Thank you.

Regina

Love without words

This public service announcement is quite powerful. I am assuming it is from Spain but I could be in error.

My thanks to Bob Johnson at Nancy Nall's blog for pointing it my way, and putting my day into perspective. My perspective was further sharpened with the news that Stephen Maxwell, a retired police office, and non smoker, had died of lung cancer. He was diagnosed with the disease in September, 2009, the same time as I was.

Thrush

Of course, the attached picture refers to the avian variety, not the physiological kind that appears to be the culprit in the continuing throat discomfort that I am experiencing. I won't post a picture of what the infection actually looks like, preferring the more musical reference instead. But it was apparent enough that my oncologist at Group Health didn't even do a culture to confirm, once he looked into my throat.

According to wikipedia, thrush's scientific term is candidiasis and it is a fungal or yeast infection. The last time I remember coming into contact with thrush was when the kids were babies. It was a condition that developed when they were nursing. Luckily they don't remember that time at all.

So I am on an anti-fungal, nystatin, that I get to swirl around and hold in my mouth every 6 hours. Apparently this is a side effect of the steroids that I was taking early on in the chemo cycle. We will hope that the cure is quick.

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.

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.

Winning the Trifecta

The biopsy results are back and they are not good. Yet they are still incomplete. Adenocarcinoma is diagnosed, moderately differentiated. They did not have enough material to identify the 'phenotype' and it is not definite that the lung is the primary site of the tumor.

I mentioned to my primary physician during the phone call that I wanted a full body scan or a PET scan to see where the cancer was in my body, and her immediate reaction was that the treatment was going to be targeting all fast growing cells in my body, so I didn't really have to identify the primary or other metastasizing sites. It's too hard to argue with my voice a mere whisper, so I will wait for when I meet the oncologists I have been scheduled with on Thursday afternoon.

Until then, I leave you with this thought. I had a chest x ray in 2005 and it showed no abnormalities. 4 years. If any of you have been considering a chest exam, I think it might not be a bad idea. This sort of cancer can remain undetected for quite a while.

Waiting for Godot, Group Health's second cousin

As you may recall, I received the news of the probable cancer in my lung on Friday last.



At the conclusion of the visit, Dr. H, my ENT doc told me that I could expect a call from oncology on Monday or Tuesday to set up my biopsy appointment. But if I didn't receive a call from them by Wednesday, I should call Group Health.

This is a feature, not a bug in Group Health service. I have learned over my 26 years as a Group Health member that you cannot sit back and expect to receive service: no, you must be an aggressive, informed consumer, unafraid to get in peoples' faces to obtain the service you think you are entitled to.

So over the weekend, I stewed, wrote emails, said thank you a lot to well wishers from many facets of my life and tried not to think about it too much. Fat chance. Luckily there was a wedding Friday night and I had houseguests for the weekend for that ceremony, who kept me well entertained.

Come Monday at 8am I was on the phone, dialing my primary care physician, Dr. Mc, someone I have seen regularly in the past 15 years, and someone with whom I am on a first name basis. I explained my situation to Dr. Mc, something she was already familiar with as I had emailed her Thurs last week and asked if she could give me the CT results early. She demurred, saying that they weren't all in. Of course, now I knew that she really wanted to reserve the tough job for the ENT guy, the one with whom I was meeting in person--something I understood. No hard feelings there. But I did tell her that I wanted her to talk with oncology and get them to call me today, Monday, to set the biopsy appointment as soon as possible.

First I got a call from Dr. N, the pulmonologist, who said he had read the CT scans and that he thought 1) the primary tumor was in the lung not elsewhere in the body, and 2) there was an opening for the type of biopsy which I needed (a CT scan or an ultra sound guided needle biopsy to be placed in my back in the lower left lobe of the lung) on Friday, and if they did not give me that time to call him back. He released my two CT scans to my GH web page, so now I could read them online and see the narratives for myself. And he gave me the number for Radiology, which I called, immediately thereafter. The woman who answered the phone could not help me and sent me to another number where I was told to leave a message. Which I did.

An hour went by. I didn't actually register the passing of time for a bit as I had to drive to Olympia for a big work related meeting and was driving to meet my co counsel, who could drive us both there. Once I got in her car, though, my cell phone rang and it was P from radiology. She started by telling me that I could not have any Motrim, Aleve, aspirin, ibuprofen, fish oil or Vit E before the procedure. No explanation why. I said fine. Then she said, "We have a date open to do this on October 8th." At that point, I jumped in and said, "No. I was told there was an opening this Friday." P said, "Yes, but you have to not have taken any of those drugs for ten days before the biopsy." My thought, not articulated but lit up in red neon at the front of my cortex was "YOU HAVE TO BE FUCKING KIDDING ME, LADY. TEN DAYS FROM TODAY IS NOT OCTOBER 8." What I instead said was, "That's fine, I will be in the clear by this Friday. Please give me the appointment." Which she then did. And then instructed me on the appropriate preparations for the procedure which will be this Friday at 6 am.

Not to be too didactic, but, this is not the first time that this has happened to me at Group Health. Unless I had spoken up for myself, I could have been waiting for 17 days for the biopsy of a tumor that in less than a month had destroyed my voice. Perhaps this is true for private medicine as well, but if so, it is not helpful in the least. I have heard that the oncology staff is very much different from other specialities in terms of their willingness to reach out and assist their patients. I hope that is true.

Again, nothing to do here but wait now for another three days. By then it will have been a week since my life shifted into a different reality.

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.