Between

At the Solstice, it is still dark, but getting lighter.

I am out of bed and out of the house, but I am not yet going anywhere.

I am not coughing as much, yet I am still coughing.

I feel better, but I do not feel good.

I have cancer, but is it advancing, receding, or stagnating?

I am between darkness and light.

Christmas Eve 2008

To all of my friends and family who celebrate, I wish you a holiday filled with peace and joy, and a new year that brings more of the same plus an abundance of good health and happiness.

Love,

Elyse

A Little Story

A little story about news magazines, in this case, Newsweek. Several months ago, a long, in-depth article about lung cancer appeared in that magazine. I was warned not to read it (thanks Amy, et al), but I could not resist. Although I was aware of much of the information, and recognized many of the physicians quoted in the article, including the oncologist from MD Anderson who is part of my own medical team, it was distressing nonetheless. When I mentioned my concerns about the article to Dr. Dubovsky, he admonished me for relying on Newsweek's version of the current state of lung cancer and its treatment. Well, it happened again. My brother pointed out an article about personalized medicine in the December 15 issue of this magazine. In a concise and informative explanation of targeted therapies for cancer, the magazine identifies Iressa as a targeted therapy for lung cancer. The problem is that except for patients already taking this drug with resulting positive benefits, Astra-Zeneca ceased marketing Iressa in the US as of September 15, 2005. It was replaced by a drug that was proving to be more effective. That drug? Tarceva.

Speaking of Tarceva, the most common side effect is an upper body rash that appears in 8 to 10 days, specifically on the face and scalp. My rash didn't want to wait. My face and scalp have already been invaded, big time. It is unsightly, it is uncomfortable, but it may be a sign that the drug is doing its job. No complaints here.

Instead of languishing as I have for months, I finally feel like I am moving forward again. I plan to enjoy some quality family time in the coming weeks. I mentioned some time ago that the Winter Solstice would be a turning point for me. Turns out I could have been on the money.

It is slight, it is subtle, but there is an improvement in how I am feeling. It's easier to get out of bed, a little less coughing, a little more energy in my voice. A trip to Target that doesn't send me to bed for days, and thoughts of what I could be doing outside of my house. I am not actually acting on these thoughts, but it has been months since I have thought past my bedroom, let alone my house. My weight is still a problem, as it continues its slide. I thought I was eating enough calories but I am told that I am not. Milkshakes in December don't have the same appeal as they had in July.

Five hits of Tarceva down, ???? to go.

BTW, Tarceva costs $5,000.00 per month. Luckily, that translates to a $30 copay for me. Life is good, I guess.

Sharing Some Beautiful Words

If I keep staring at the blog will the news change?

If I drink a bottle of wine, will it numb the pain?

If I take a hot shower, will it wash away the tears?

If I lay down to sleep will it halt the fear?


Thanks, Lenore

There has been a change in my treatment plan and today I had "Tarceva teaching." This treatment is in lieu of chemotherapy. Frankly, I didn't learn much about Tarceva that isn't found on the web. I will be seeing Dr. Dubovsky once a week and I am to report any breathing difficulties to his office immediately. I am left wondering how to determine if I am experiencing trouble breathing, since I have only one lung and it is diseased. I guess I will use my judgment. I will be doing baseline breathing tests at Dr. Scheinberg's office tomorrow, and will begin taking the Tarceva at bedtime tomorrow evening.

Thanks to all you blog commenters, stealth or otherwise.

This blog has become an important life force for me. The writing is cathartic, and it is an easy way for me to disseminate information to those I care about and who care about me. What I want to emphasize, however, is how important your comments are to me. I've hassled the stealth blog readers, you know who you are, who read but never write a comment. I have to say that it is those of you who put yourselves out there on the blog who helped me face the devastating news that the "stuff" in my right lung is diffuse malignant tumor. Dr. Scheinberg and his colleagues were shocked at the results of the pathology report. It is no reassurance that the pattern of disease in my right lung is highly unusual, but it's a fact, Jack.

I am not afraid. I am choosing to fight with the weapons available to me. I have been meeting and talking with doctors, and the current plan is to stay the course with the carboplatin and alimta. Of course, there could some adjustments to that plan. One of the other changes in the works for sure is to make more of each day. I have been spending most of my time alone, often in my bedroom, trying to heal my body. Instead, I am going to seek out more company and make more forays out into the world, even if it's just for lunch or a milkshake, or to the office to help out. Maybe even a movie. Ann Silver will help me set up the calendar on the lotsahelpinghands website.

Please know that your cards, letters, emails, visits and calls are also vitally important to me. There is just something about this blog that connects me to you, and keeps me moving forward.

Stay strong for me. I am staying strong for you.

Update and The Fun Never Stops

The river that is my life continues to be fraught with many big rapids.

Sunday drifted into Monday, and then to Tuesday. There was no great improvement in how I was feeling so I stuck close to home and to my bedroom. On Tuesday afternoon I wandered into another room for a change of scenery and began experiencing an unpleasant tightness and discomfort in my chest. After a round of calls to Dr. D's office, I headed to St. Jo's. Once there, I had to tell my story to the ER doc, which is becoming a problem as this story gets longer and longer. A flurry of calls between Dr. Scheinberg and me and the ER doc and Scheinberg resulted in a CT scan with contrast, something I was resistant to but ultimately relented. I am trying to be mindful of all the radiation that has bombarded my body, and besides, the contrast produces the sensation that you are wetting your pants. The ER doc's initial impression that I was suffering from pericarditis did not pan out, so I was sent home, which was good, but with my problem unresolved, which is bad.

On Wednesday, Scheinberg texted me that he and a radiologist were looking at my scan from the previous evening. And then nothing. No word from Scheinberg on the results. Scheinberg and I did not communicate again until Sunday night, so that left 4 days for me to be concerned. "Be concerned" is a tactful way of describing what I was feeling. Nevertheless, I enjoyed a delicious Thanksgiving lunch with my family, and a spur of the moment jaunt to a North Georgia cabin with John, Brent and his friend, again, for a change of scenery. Despite the rain that never let up, we had fun.

Sunday night Scheinberg and I reconnected and again, he would not reveal what was in the scan. He indicated that we would talk the next morning. "Be concerned" blossomed into something more alarming. Monday morning did not bring the reassurance I was desperately seeking; instead, Scheinberg asked me to come to his office asap. Once there, we talked about the difference between the scan that sent me to the hospital in October, and last week's scan. Apparently, whatever was detected in my right lung in October has gotten worse, and he had already scheduled a bronchoscopy for that afternoon. No discussion. No choices. I was free to do whatever I wanted except eat and drink until I reported to the hospital at 1:30 pm.

Endoscopic procedure No. 3. Four tries to get the IV in. Trouble coming out of the sedative, and violent coughing. The last nurse and I closed the place down at 6:30 and I left with an oxygen tank and more waiting for me when I got home. I was exhausted from the trauma of the day and I slept fine, covered in dachshund. It seemed like there were 10 in the bed last night, instead of 4.

Today I am finding that I need the oxygen to move around and if I am going to talk for more than a few minutes. Scheinberg is still claiming that whatever is in my right lung resembles an infectious disease, such as tuberculosis. That still seems unlikely to me but not to him so he repeated the TB test. Now I wait, patiently or not, for the results of the cultures.

I am too consumed with the task of putting one foot in front of the other to do anything more than a general thankful for all the support I have received from friends, family, colleagues and the medical community. I know you are there for me.

Love to all.