So maybe it is not realistic for me to have a perfectly clear scan. The doctors I am working with know that it frustrates me to not have attained that yet. And I understand that many people with cancer arrive at a point where the best treatment plan is "wait and see". But there are several factors that are only making things worse for me mentally and emotionally as I face this. First, the fact that we couldn't get a decent biopsy. Second, my doctors don't really pick the "wait and see" option and tell me with a certainty that this is the very best thing. They have been sort of "hemming" and "hawing" and then they say "wait and see". I don't think they can make up their minds and I think they really want a second opinion. There are a million other things I'd rather be doing but maybe it won't be too much trouble. I see now why so many people want to quit going to the doctor at this point but I will keep letting them check on me. My new goal is to find a doctor that looks at my scans and says, "Hey, I've seen this before, this is what is going on here...." instead of "It's not clear to me what is going on here." Or a doctor that simply agrees with my current doctor about what to do.

So I visited the radiologist today. I expected she would set up a radiation schedule for the one remaining spot that glows on my scan in my right hylar region. Instead, she told me that she does not recommend that I receive radiation at this time. (Just like last April, remember). She said that when she examines the scans and reports it is not clear to her what is going on. She wants me to do another scan next week (WEdnesday - a PET scan). If it shows no further growth she recommends no treatment at this time - just wait and see. She said that we shoulg consider my energy levels (which are up and I feel healthy) I told her I am frustrated by going back and forth on the issue of whether to do radiation during the last 8 months. Last week my oncologist looked me in the eye and said, "You still have cancer and need radiation." Today the radiation doc says, "I'm not sure you have cancer at all and we really shouldn't do radiation." She said she understands that I need to get on with my life. I am frustrated that my scan is not totally clear, yet we cannot get a decent biopsy to determine definitively what is going on, and yet the doctors are not offering anything to work on to achieve the goal of a clear scan. Further, I told her that I would like a second opinion but I don't know if my insurance will cover it. She said the doctors might research that for me. I meet with this doctor again on Friday (two days after the PET scan).

Tuesday afternoon I visited my oncologist. He said I should go to radiation and set up an appointment with the radiologist, who I met last spring. I will see her next Monday to consult about starting radiation. Although she recommended against it last spring, that was when my scans looked a little different than they do know. I had several glowing spots before, but now I only have one main glowing spot that needs to be radiated. (She will like that). My oncologist could only guess about how many days it will take, but he estimated 4 or 5 weeks of radiation. I am anxious to see how this scheduling will work out. Things are very busy around here and everyone in my household is in school and dealing with more important things than cancer. I might be setting up the last treatments and finally I will be rewarded with a wonderful prize of a CT scan that is clear. It is hard to keep that goal in mind when I've been stuck in treatment and wait-and-see for what seems like forever. But cancer-free would be nice. We just have to take it one day at a time. I still have ups and downs mentally. I like thinking of myself as healthy now and not as a sick person but I must take care of myself and go to the doctor some more because I really am sick with a tiny bit of cancer still there. The hardest part during the last 8 months has been the changing direction, the fact that it seemed like my doctor changed his mind or just had to fine-tune the plan as my scans finally changed after that last dose of chemo in March. Sometimes I am still a bit grumpy but other times I beating all the bad thoughts down and getting stronger in every way possible.

So today I returned to the thoracic surgeon. My husband was able to join me for this appointment and he got to see the scan images for the first time. The surgeon explained again how the lymph node that we need a sample from is very small and next to many other lymph nodes of similar size - so, in surgery it would be hard to distinguish which one to take the biopsy from, and even if he took the biopsy from several, he could not guarantee that the results would be what my oncologist wants. Since it is a serious surgery with a bit of a recovery time, he consulted with my oncologist, who said that it would be best for me just to go to radiation without the surgery at this time. I am ok with that. Although, the surgeon did mention that he would see me again if my cancer did not respond to radiation. All I could think was that would not happen, I would not be back, I am going to radiation to kill the cancer and won't need anymore biopsies or anything. However, if I am wrong (hey it wouldn't be the first time, right?) it is nice to know there is a nice surgeon waiting. My next appointment, believe it or not, is not with a radiologist, but back to the oncologist. I guess he wants to talk again before sending me to radiation. I say, "Let's radiate and be done with it!"

I met a thoracic surgeon today. He was very nice and I had no doubt of his qualifications, because he previously worked at MD Anderson, where they do nothing but cancer! So I am in good hands. He reviewed with me my progress so far and explained that my biopsy last week gave two samples - one showed nothing and the other showed lymphocytes but didn't reveal cancer. He said needle biopsies like that many times are not big enough samples to get a good sample. Then he showed me my last PET/CT scan on the computer. He showed the lymph node in my chest that "glows" during the scan from the radioactive fluid, the one that my oncologist wants a sample from. He said to notice how small it is and how it is located right next to many other small lymph nodes. He is a little concerned that when he opens me up in surgery, he won't be able to figure out which lymph node is the one he needs the sample from! I said it's too bad it doesn't glow all the time. (I was concerned because it is located next to all the veins, lungs, heart, etc. He said he works around those all the time.) He wants to talk to my oncologist a little more, and will do so tomorrow. Some ideas he suggested are: waiting a couple months to see if the lymph node in question gets bigger so it is easier for the surgeon to identify, going ahead and trying the surgery, knowing it might not get exactly the right sample, or take a sample of a totally different lymph node, such as the center of my chest, media stynem or (my suggestion here) maybe it will get smaller and go away. The surgery itself sounds like he might have a couple different options. Some sounded ok to me. I did not like the option where they pry my ribs open or leave me in the hospital recovering for an extra day with a tube in my side. But I will try not to think about that right now. I said, hey, all you doctors talk to each other first and get real comfortable with each other's ideas. I see this surgeon again next Thursday and I'll bring my husband so he can hear the whole thing himself. The last thing the doctor said was that I should write down all my questions. Maybe he expects me to have a lot before the next surgery.

Hey, the doctor himself called me just now. He said that although he was able to get a sample of the core of my lymph node, nothing diagnostic was revealed in the lab tests. So that means they tested it for cancer and it showed up negative. He discussed this with my oncologist, who sort of expected this result from this type of biopsy, and wants me to schedule a biopsy with a thoracic surgeon next. (Who will cut into my chest to get a better sample). Are we having fun yet?

I had my bronchoscopy Wed morning. I arrived at the hospital on time, with my stomach empty, having fasted from breakfast. After the typical paperwork in the business office, I was sent upstairs and some very nice nurses installed an iv in my port so the doc could later give me the drugs to keep me partially sedated and eventually amnesiac for the procedure. Then the nurses inspected the back of my throat and "rated" it. (it was a normal rating) And strapped a mask on my face to help me breath in a sort of novacaine-type gas, (but not novacaine) to numb my throat. I sounded like Darth Vader breathing it in. They moved me in my stretcher to a different floor while I was breathing this. Great! Everyone in the hall got to see me with this ridiculous mask on, sounding like Darth Vader! Then I arrived at another floor where we entered the room where the procedure would occur. My doctor walked in (I like him), and I was lucky that my husband was still there because I had begged them to let him stay until I passed out. I get so anxious in the moment right before this kind of thing. They hooked up oxygen to my nose. And ordered the drugs versed and demoral for my bloodstream and I was out. My husband says that when I woke up I told him that I did good. I do not recall that. The doctor told him that he was able to find the swollen lymph node that we wanted a biopsy from and he got a good sample of the core! Hooray. Today I'll call and see if there is any news yet, but this would be the earliest. Recovery was, in some ways not bad. I slept all day Wednesday. I could not shake the sleepy feeling no matter how hard I wanted to. Pat encouraged me to drink to flush out the drugs. The next day I joined the family driving around town on errands and a 1 hour gentle bike ride. After that I felt horrible. This should have been a big red flag to me because usually exercise makes me feel really good. I did crave a little more water/fluids, but...? I felt sort of angry and very depressed. I could not shake the weepy feeling no matter how hard I tried. Finally, I grabbed my husbands "Drug guide for Nurses" and started reading to see if I could be having some sort of reaction/rebound to the drugs from the procedure. With Pat's help, we figured out that since the drugs they gave me are CNS (Central Nervous System) depressants, that when I also took my normal daily dose of ativan Wednesday evening, which is also a CNS depressant, for someone like me who is sensitive to drugs I was sort of flooded with these similar acting drugs and then in a mini-withdrawal by Thursday evening. This morning I feel normal but I will remember next time to skip the ativan the night after they give me those other similar drugs. Too many for me but I'm sure it would be something that has doesn't even bother someone else.

I met the lung doctor today. He described the procedure called a bronchoscopy. They'll put a tube down my throat that has a sort of tiny ultrasound on the end of it, snake it thru my bronchial tubes/lung area to be directly behind my enlarged lymph node and then take a snippet of it, (biopsy) and send it off to a lab. First the doctor and then the nurse told me, "You'll have to not eat or drink anything after midnight the night before this." I said, "Oh, I can do that. If you only knew how many times I have fasted for scans this year!" They scheduled this for next Wednesday. Results will be in, Friday at the earliest. I think that would be an extremely optimistic time frame for results/turn-around. I'll schedule the follow-up to get the results with my oncologist later.