How it all started . . .
On September 19th I got a call from Connie, my Family Nurse Practitioner. She asked me to come in to discuss the resuls of the x-rays I'd had the previous day. She said there were some things we needed to discuss. It was as if tiny pinpricks of electricity filled my entire body. I knew it was bad or Connie would never have called. To every question I asked, she answered that we needed to go over some things. She wouldn't give me any more information than that. Her responses only convinced me that, whatever the problem, it was extremely serious. Since I'd had x-rays of my chest (because I'd been exhausted for months) and mandible (due to pain that was suspected to be TMJ), I knew it was quite likely that my lungs were the issue.
We set an appointment time for a couple of hours later and during that 120 minutes, I felt doomed. My hands were shaking and I was trembling inside. For some reason I wanted to go for this visit alone. When I was waiting in the examining room and Connie walked in, I knew from the expression on her face that she wasn't looking forward to this discussion any more than I was.
What she told me was that I had four masses in the lower lobe of my right lung that looked very suspicious. It's funny because I didn't react to that news as drastically as I had to her earlier phone call. I suppose I already knew what she was going to tell me. I was a bit overwhelmed that there were multiple masses and it took me awhile to digest that.
That was the beginning.
Connie quickly scheduled a CT scan of the lung (which showed more masses than the x-ray had) and an appointment with a pulmonologist. The pulmonologist viewed my x-rays and CT scan and said it was probably cancer but that he wanted me to have further testing done to be sure. Then I had a PET scan where cancer cells appear much brighter than all other cells. He also ordered a CT scan of the abdomen and pelvis to make sure there was no cancer in those areas, a pulmonary function test and, finally, a needle biopsy of one of the masses in my lung. This was on September 29th.
I had all of that done and never heard from the pulmonologist about any of the results. I had to wait until October 12th for a follow-up appointment with him. While I waited, I went from feeling optimistic that it might be an inflammatory disease to the black certainty that I had lung cancer. The waiting seemed endless. It's very hard to deal with an unknown.
I believe that doctors do a disservice to their patients when they don't relate the findings of tests as they receive them. It's easier to cope with the facts than it is to suffer through the state of limbo created by not knowing. I tried to fill my days with activities and thoughts that didn't revolve around the threat of cancer but it was always there in the back of my mind. Sleeping was difficult even though I was totally exhausted.
On the 29th, the pulmonologist finally told my husband, Dave, my sister, Sherry, and I that the diagnosis was adenocarcinoma of the lung. While I certainly wasn't happy with that diagnosis, for some reason I remained calm, probably calmer than I'd been when we arrived for the appointment. At least then I knew what I was facing. The doctor went on to say that he recommended radiation and chemo to attempt to shrink the tumors and then surgery to remove the lung. When I asked him what the survival rate was, he said 15-20% two-year survival. That wasn't exactly encouraging news.
Then I had to do the hardest thing ~ relate this information to my 81 year-old mother, my daughter, Jenn, and my son, John. All along, I've been much more worried about my family than I have about myself. My feeling is that it's easier to die than to be left behind. My mother and Jenn live very near Dave and me ~ well within walking distance; however, John lives in California so my bad news had to be given to him over the phone. They reacted as you would expect, emotionally but still with hope that it could turn out okay. I was calm and optimistic and I think that made it a little bit easier for them.
Since that day, I've met with the radiation oncologist, Dr. Shah, who doesn't feel that surgery is an option and reduced the odds to 10-15% survival. I've also gone through the simulation for radiation therapy. Because my radiation therapist has been so wonderful about explaining everything and answering all of my questions, I don't fear the radiation treatments. I've also met my medical oncologist who agreed with Dr. Shah that surgery is probably not an option. Dr. Mehrotra explained the chemo schedule, proposed two different drug courses and asked me to choose which one I wanted. One is 2-3% more effective but includes the side effects of possible allergic reaction, kidney damage that is not reversible, and some degree of hearing loss. My family and I are still debating which to choose. She also ordered an MRI of the brain and a bone scan to make sure there has been no metastasis, along with some kidney tests. Finally, she ordered the insertion of a med port so that I don't have to be poked each time I have a chemo treatment, and a mediastinoscopy where they make an incision just above your collarbone and insert a special tube into the mediastinum so the surgeon can see the lymph nodes near the heart and biopsy them.
Next, I saw Dr. Holmes, a thoracic surgeon. He concurred with my oncologists that surgery is not an option ~ at least not at this point. He's scheduling the placement of the med port and the mediastinoscopy. I'm a little fearful of the second procedure since it will take place so close to the aorta but everyone assures me Dr. Holmes is an excellent surgeon. Thank goodness I'll get a general anesthesia so I won't know what's going on!
I had the MRI yesterday morning and it wasn't nearly as scary as I thought it would be. I took a .5 mg tablet of Xanax beforehand as the oncology nurse suggested but I really feel that I would have been fine without it. The MRI tube was not as frightening as I thought and didn't make me feel claustrophobic. I did, however, learn that if you take Xanax at 6:45 in the morning without having enough sleep, you can expect to walk like a drunken sailor and have your mind turn to mush! : )
I feel confident with the facility where I've chosen to receive treatment and I love my two oncologists, Dr. Shah and Dr. Mehrotra. Even though my disease is in Stage 3, they have both assured me that they're going to treat it aggressively and go for the cure. They are both kind and compassionate but still straightforward, which I want. Dr. Mehrotra showed me the chemo room where I'll receive treatment ~ it's bright and cozy with nice reclining chairs for comfort.
I admit I'm afraid of chemo because it's still an unknown to me but I think that fear will pass once I start treatment. I know I'm going to go through a lot of unpleasant symptoms from the treatment but Dr. Mehrotra assures me that they can control most of them and that I won't have to suffer like patients did not that long ago. She told me that when my hair finally grows back in after the chemo, it will be gray. Now, what kind of news is that to give a woman? I was kind of hoping for a nice ash blond! ; )
I believe that once you learn your diagnosis, what's recommended to treat it, choose your facility, treatment and doctors, everything becomes easier. It's the waiting and wondering ~ the uncertainty ~ that threatens to unhinge you. First it's the trauma of waiting to hear the diagnosis, then it's the confusion of choosing where you want to be treated . . . Once those are behind, you can finally become settled and start to feel that you have some control over what's happening. You also have the comfort of knowing there's a team of experts working with and for you.
There's no doubt that lung cancer is scary but you have to remember that, no matter how bad the odds may seem, you can be among that percentage of patients who win! Don't let your mind tell you anything else. I firmly believe that a positive attitude, laughter and humor, along with the determination to keep fighting, makes a huge difference in your outcome.
Not all of my posts will be this long. There may be days when I don't feel well enough to post at all, but I'll be here with you as often as I can be. I hope those of you who are also suffering from lung cancer will visit frequently and that we can share our experiences, pick each other up when one of us is having a bad day, pass along the funny things that happen, and just generally support one another.
Until the next time . . . Remember to think positive thoughts and KNOW you can beat it!
We set an appointment time for a couple of hours later and during that 120 minutes, I felt doomed. My hands were shaking and I was trembling inside. For some reason I wanted to go for this visit alone. When I was waiting in the examining room and Connie walked in, I knew from the expression on her face that she wasn't looking forward to this discussion any more than I was.
What she told me was that I had four masses in the lower lobe of my right lung that looked very suspicious. It's funny because I didn't react to that news as drastically as I had to her earlier phone call. I suppose I already knew what she was going to tell me. I was a bit overwhelmed that there were multiple masses and it took me awhile to digest that.
That was the beginning.
Connie quickly scheduled a CT scan of the lung (which showed more masses than the x-ray had) and an appointment with a pulmonologist. The pulmonologist viewed my x-rays and CT scan and said it was probably cancer but that he wanted me to have further testing done to be sure. Then I had a PET scan where cancer cells appear much brighter than all other cells. He also ordered a CT scan of the abdomen and pelvis to make sure there was no cancer in those areas, a pulmonary function test and, finally, a needle biopsy of one of the masses in my lung. This was on September 29th.
I had all of that done and never heard from the pulmonologist about any of the results. I had to wait until October 12th for a follow-up appointment with him. While I waited, I went from feeling optimistic that it might be an inflammatory disease to the black certainty that I had lung cancer. The waiting seemed endless. It's very hard to deal with an unknown.
I believe that doctors do a disservice to their patients when they don't relate the findings of tests as they receive them. It's easier to cope with the facts than it is to suffer through the state of limbo created by not knowing. I tried to fill my days with activities and thoughts that didn't revolve around the threat of cancer but it was always there in the back of my mind. Sleeping was difficult even though I was totally exhausted.
On the 29th, the pulmonologist finally told my husband, Dave, my sister, Sherry, and I that the diagnosis was adenocarcinoma of the lung. While I certainly wasn't happy with that diagnosis, for some reason I remained calm, probably calmer than I'd been when we arrived for the appointment. At least then I knew what I was facing. The doctor went on to say that he recommended radiation and chemo to attempt to shrink the tumors and then surgery to remove the lung. When I asked him what the survival rate was, he said 15-20% two-year survival. That wasn't exactly encouraging news.
Then I had to do the hardest thing ~ relate this information to my 81 year-old mother, my daughter, Jenn, and my son, John. All along, I've been much more worried about my family than I have about myself. My feeling is that it's easier to die than to be left behind. My mother and Jenn live very near Dave and me ~ well within walking distance; however, John lives in California so my bad news had to be given to him over the phone. They reacted as you would expect, emotionally but still with hope that it could turn out okay. I was calm and optimistic and I think that made it a little bit easier for them.
Since that day, I've met with the radiation oncologist, Dr. Shah, who doesn't feel that surgery is an option and reduced the odds to 10-15% survival. I've also gone through the simulation for radiation therapy. Because my radiation therapist has been so wonderful about explaining everything and answering all of my questions, I don't fear the radiation treatments. I've also met my medical oncologist who agreed with Dr. Shah that surgery is probably not an option. Dr. Mehrotra explained the chemo schedule, proposed two different drug courses and asked me to choose which one I wanted. One is 2-3% more effective but includes the side effects of possible allergic reaction, kidney damage that is not reversible, and some degree of hearing loss. My family and I are still debating which to choose. She also ordered an MRI of the brain and a bone scan to make sure there has been no metastasis, along with some kidney tests. Finally, she ordered the insertion of a med port so that I don't have to be poked each time I have a chemo treatment, and a mediastinoscopy where they make an incision just above your collarbone and insert a special tube into the mediastinum so the surgeon can see the lymph nodes near the heart and biopsy them.
Next, I saw Dr. Holmes, a thoracic surgeon. He concurred with my oncologists that surgery is not an option ~ at least not at this point. He's scheduling the placement of the med port and the mediastinoscopy. I'm a little fearful of the second procedure since it will take place so close to the aorta but everyone assures me Dr. Holmes is an excellent surgeon. Thank goodness I'll get a general anesthesia so I won't know what's going on!
I had the MRI yesterday morning and it wasn't nearly as scary as I thought it would be. I took a .5 mg tablet of Xanax beforehand as the oncology nurse suggested but I really feel that I would have been fine without it. The MRI tube was not as frightening as I thought and didn't make me feel claustrophobic. I did, however, learn that if you take Xanax at 6:45 in the morning without having enough sleep, you can expect to walk like a drunken sailor and have your mind turn to mush! : )
I feel confident with the facility where I've chosen to receive treatment and I love my two oncologists, Dr. Shah and Dr. Mehrotra. Even though my disease is in Stage 3, they have both assured me that they're going to treat it aggressively and go for the cure. They are both kind and compassionate but still straightforward, which I want. Dr. Mehrotra showed me the chemo room where I'll receive treatment ~ it's bright and cozy with nice reclining chairs for comfort.
I admit I'm afraid of chemo because it's still an unknown to me but I think that fear will pass once I start treatment. I know I'm going to go through a lot of unpleasant symptoms from the treatment but Dr. Mehrotra assures me that they can control most of them and that I won't have to suffer like patients did not that long ago. She told me that when my hair finally grows back in after the chemo, it will be gray. Now, what kind of news is that to give a woman? I was kind of hoping for a nice ash blond! ; )
I believe that once you learn your diagnosis, what's recommended to treat it, choose your facility, treatment and doctors, everything becomes easier. It's the waiting and wondering ~ the uncertainty ~ that threatens to unhinge you. First it's the trauma of waiting to hear the diagnosis, then it's the confusion of choosing where you want to be treated . . . Once those are behind, you can finally become settled and start to feel that you have some control over what's happening. You also have the comfort of knowing there's a team of experts working with and for you.
There's no doubt that lung cancer is scary but you have to remember that, no matter how bad the odds may seem, you can be among that percentage of patients who win! Don't let your mind tell you anything else. I firmly believe that a positive attitude, laughter and humor, along with the determination to keep fighting, makes a huge difference in your outcome.
Not all of my posts will be this long. There may be days when I don't feel well enough to post at all, but I'll be here with you as often as I can be. I hope those of you who are also suffering from lung cancer will visit frequently and that we can share our experiences, pick each other up when one of us is having a bad day, pass along the funny things that happen, and just generally support one another.
Until the next time . . . Remember to think positive thoughts and KNOW you can beat it!
posted by Linda @ 7:22 AM
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