March 2009


Dr B’s conclusion is the chemo did the damage to my throat and mouth. All should heal with time. Premeds and lots of fluids during treatment should avoid this for future chemos. Now it’s mostly a sore throat and sketchy voice. I’ve added another medication – a rinse to soothe and heal my mouth and throat. It’s nice to have something to help get me through the night.

Both the dentist and the ENT doctor independently think the ear/jaw issue is due to dental pressure  – TMJ of a muscular and tendon nature rather than typical bone and joint. They both recommended a night guard. It’s been a relief to know it’s nothing serious. The consensus is nice, too.

Tuesday’s blood test indicate I’m neutropenic again. Which means my white counts are dangerously low and I am at high risk for infection. I feel fine. I’m getting daily injections for a week to stimulate my bone marrow.

Since Thursday I’d been getting progressively short of breath and having trouble talking. Late Friday afternoon I finally called Dr B’s nurse, Erin. I was told to come in for a chest xray to be sure I didn’t have pneumonia or some type of fluid buildup in my lungs. A PE was another concern. It was late in the day so the ER made the most sense. Carinda from work drove me there. Oddly, someone driving around a blind corner egged her car. Fortunately, it was just one. The guard at the hospital helped her clean it up and no damage was done. It was so strange.

Ken joined me within the hour. Blood tests and a chest xray didn’t give any clues. Next was an ultrasound to check the status of the blood clot in my neck. No significant change was found. Then the usual, at CT. By this time, it was down to a PE. But this wasn’t found either. Since everything serious had been eliminated, I was allowed to go home. The assumptions included: numerous small PE’s (which are not life-threatening), a lingering allergic reaction from Tuesday’s chemo, or maybe bronchitis. My oxygen levels were great – which was very reassuring.

In the meantime, I’ve been resting a lot. I’m feeling a bit better. But I am not sure how much of it is from rest or from actual improvement. My next appointment is Tuesday. If nothing worsens in the meantime, I’ll wait until then.

Today was the first day of my new chemo treatment – my third line. Because I will not be getting a trial drug, I will get chemo just once every 3 weeks. Today was a long day but like many like it, we got through it. In addition to the blood tests, a visit with Dr. B, and the chemo, we squeezed in an ultrasound on my neck. The ultrasound was to better assess my blood clot and the neighboring veins. Results will likely be tomorrow. Aren’t computers great?

I didn’t get a lot of sleep last night because of pain from the clot. Eventually Ken stirred and asked what he could do. He got me a snack to settle my stomach and one of my pain pills. Within 30 minutes I was hard asleep. When the pain pills eventually wore off this afternoon, there was a break in the pain. This is a sign that the clot is noticeably dissolving. It should continue to do so as long as I don’t miss any more injections.

Now I need to brace myself for the likely fatigue and nausea. I should have my hair for about another 4 weeks. There are other side effects but they aren’t as likely. One day at a time.

 

Team WheatleyA recent bright spot in my life was the Lung Cancer Walk. Support means so much for all of us with this disease. It’s horrible finding out you have any kind of cancer. To hear learn it is one that is virtually neglected is shocking. That’s why this walk was so important.

Currently early detection of lung cancer is primarily accidental, few treatments are available, and survival rates have made little progress for decades. All because of a long history of scarce funding and research. This is changing. Support is gaining and promising research is underway. Hope is growing and you have been a part of it.

Along with my hope for my own prognosis, is my hope to change the tide and increase lung cancer research. The Walk demonstrated that it can be done! It was so thrilling to see so many people joined together supporting the event with their feet and their wallets – especially in these dire financial times. I had two disappointments. Not finding everyone I knew who was there, and that it was all over so fast. With spirits lifted, even survivors who thought they would be pressed to make 5K said they felt that could have kept on going. 

Thank you all for your generous support!

My port placement went well. The best part was the drugs. VERY relaxing. The port goes under the skin. Now, when I need an IV or blood test, a needle can be poked through my skin to the port. No more fishing for a vein. My least favorite part of IVs. Here’s a link to see what they look like. http://www.angiodynamics.com/pages/products/smart_port_ct.asp

I’ve sat down to blog many times this past week or so. But, I’ve been too tired or stressed out. I’ve had chest pains and back aches of varying degrees. If I take a pain killer I end up asleep on the couch. Not my preference. The last several days I’ve been waking up early with earaches and headaches. This morning was no different – day 3 of the same headache. But, it’s finally gone. Yeah!

In the middle of all this was the Lung Cancer Walk. I was so excited I woke up early and couldn’t wait to leave for the event. And that was with the time change! It was an amazing experience. So many people showing their support and concern. So many smiles. The goal for donations was blown away. There were so many participants many didn’t get a t-shirt. And, there were special ball caps for survivors with “survivor” embroidered on the back.

I got to meet, Chris, a survivor I’ve known over the phone and the occasional email since August. She joined Team Wheatley and brought in more donations and helped push us into 5th highest earning team.

The low-point was learning of the loss of Linda. She was one of the four walk organizers. She died a few days before the walk. It was good to see so many of her friends and family there in huge numbers.

I remember when I first learned about the walk. It was planned for November 2008. I was struggling through chemo and pneumonia and wondered if I’d make it. Later when it was postponed to March, I thought, yea, I will. I’ll make it. Thank all of you for all your help and for being there with me in body or spirit or both and for getting me there. I couldn’t do this without you!

On Tuesday I learned that I won’t be getting the trial drug. I qualified for the trial but lost the toss for the new treatment. I will be in the control group. I will be getting the standard of care, Taxotere. I don’t know how many cycles. But, it’s two weeks on, then one week off.

This makes my trial results 50-50. I got it the last time and missed out this one. Once I start a program, I will be disqualified from others. Hopefully, this will be effective on it’s own. It will at least be good to be getting treatment again. I am getting an occasional cough. My chest pains and back aches are easing. My earache and headaches continue. I will go through another brain MRI. It been about 3 months since the last one. It would be nice to know what’s going on.

So much has changed since last Tuesday. So much it feels like it’s been weeks since we got the bad news.

I’d expected to get about another year on Tarceva. Time I’d begun to count on has been snatched away. It’s devastating. We’ve now been through this a few times but it doesn’t get much easier. Lots of tears. More uncertainty. Another crossroads.

Since getting the news, I’ve been either working late or exhausted or both. No opportunity to blog. And there have been the new pains. Because of severe back pains several days in a row, I had MRI of my spine last Saturday. But, the results weren’t definitive. That can happen with most of these tests from time to time.

Then over the weekend I started getting more intense chest pains. By Monday morning it was constant and I was referred to the ER. I doubted it could be a heart issue, but I have been on a lot of different drugs with various side effects. There was also pulmonary emboli to rule out. For this, I had another chest CT. No PE. But, there is further noticeable disease progression – and in just two weeks. Not good – but I guess not entirely unexpected. So it’s pain management for now. And wait. The day at the ER was exhausting and aggravating. It was the entire day! I felt ignored and forgotten much of the time. Ken would have come in an instant. But, I insisted he get through his meetings. We were in phone contact as much as possible which helped. But, I learned my lesson. I won’t go it alone again. 

Dr B is recommending my next line of treatment be Taxotere along with another trial drug. It doesn’t have a catchy name yet – just a designation of letters and numbers. To qualify, I have to wait 3 weeks from the time I stopped taking Tarceva. Three weeks without treatment. Three weeks allowing the cancer to progress. The hope is adding the trial drug will squeeze more success out of the treatment than without it.

To make chemo easier I will get a port implanted. This will make treatments, blood draws, and other tests (with IV contrast) much easier. I know it’s the right thing and I am ready for it. But it doesn’t mean I am looking forward to having a foreign object in my chest with a tube resting inside a major artery. The procedure will be done next week. Then, if all goes well, chemo starts on the 17th.

In the meantime, I had a bone scan. It was a routine follow-up to the trial I’d been on. Dr B thinks it might also give some insight into my chest pains. We’ll know tomorrow.