My Mountain Goat Loses His Balance

I am Barbara, and I am writing this blog. Wayne, my husband, was diagnosed with metastatic lung cancer two and a half weeks ago. He has brain tumors as well, too many to operate, and we still don't know if it's in any other area of his body. There are spots in his right lower back that are suggestive of bone cancer although the oncologist doesn't think it is.

This all happened really fast. In late May, Wayne fell and cracked a couple ribs. Over the next few months, he fell occasionally, which is really unusual for him. He's a mountain goat. By late July, we were kidding about it. But by the first of August, it became critical. We saw our family doctor on the second of August, and we talked about getting an MRI, The neurological testing was abnormal. I was thinking that he probably had another benign brain tumor, and while I wasn't thrilled about it, it wasn't anything we couldn't handle. Then the doctor took an x-ray of Wayne's back to look for a reason for his weakness in his leg.

The next night, the doctor called and told me that the radiologist had picked up an area on the x-ray that was suggestive of metastatic bone cancer. I went cold. I told Wayne and then went about researching it online. What it meant was that if this was cancer, it was already metastasized to the bones because bone cancer is unusual in adults as a primary cancer. I learned that the primary cancer could be lung cancer.

On Wednesday we went back and started getting tests. Wayne had a bone CT, which was even more suggestive than the x-ray, and a chest x-ray, which showed a spot on his right lung, so then it was a chest CT and a definite diagnosis of lung cancer. During all this, Wayne's balance was getting worse by the day, so they made him an appointment for an MRI on Sunday and another with an oncologist for the next day.

On Thursday the oncologist told us that the CT showed that Wayne has cancer in his lower lobe of his right lung and that it has wrapped itself around his chest wall and attached to his diaphragm. There are also nodules on his thyroid, some potentially hot lymph nodes in his lungs, and a cyst on his kidney. He wasn't as concerned about the pelvic CT though. He then performed another neurological exam and his findings were markedly different from those on Monday. We talked about what to do when we got the MRI results back. He had hoped that he would be able to go in and take out a single brain tumor. However, when the MRI results were in, they showed four tumors and two small things that may be the beginnings of new tumors, and that is not considered operable. One of the tumors was bigger than the others as well. And on top of that, the MRI itself must have irritated his brain because right afterward, he had a huge exacerbation of neurological symptoms. I left him standing outside the car while I ran into the grocery store for a few things and when I came out, he seemed dazed and confused. I asked him if he'd had a seizure and he said no but that he didn't feel right. I asked why he didn't come find me and he said his legs weren't working. By the time we got home he had to sit down and go up all the stairs on his butt. I sat down to call the on call neurologist and found that she had left me a message to call her right away. I ended up taking him back to Wenatchee to be admitted to the hospital for IV steroids. He got better pretty fast, but it was terrifying. Five days after first hearing the word cancer, he was in a crisis situation with it. It happened way too fast. And it seemed like every day the news was worse and worse. While in the hospital they got a lung biopsy and we got the first break. Of the four major types of lung cancer, his is the best to have. He has non small cell anode-carcinoma.

It's mind boggling to me that some of the first symptoms that presented were neurological. He has been telling the VA doctor for a year that he has pain in the bottoms of his legs as well as all the way up to his hip in his right leg. However, the first doctor there told him it was probably just neuropathy from his diabetes that he doesn't have. I don't know where he got that idea, but we had a hard time shaking it. He didn't take an x-ray or even examine his legs or back. Upon admit to the VA system he should have had a chest x-ray, but they were too busy. They were always too busy. The second doctor was not even willing to discuss the pain in his legs. It's like they thought he was drug seeking. And now, I feel really bad that I didn't speak up more for him. He doesn't complain unless it really hurts, and while he is now getting medication for the pain, he should have been getting something better than ibuprofen all along.

But we don't yet understand how the cancer is causing the leg pain, just that it is, so even if the doctor had explored the cause for the pain, he might not have found the cause. And even if Wayne had had a chest x-ray a year ago, it might have been clean. Lung cancer is aggressive cancer and it grows and spreads fast.

It's been four weeks now, and I am so full of information that I haven't passe on. I need to let you know that we do have some new and interesting information. The radiologist looked over the CT of the pelvis area and the spots that at first were suspicious, looked benign to him, as well as to the oncologist. However, he found another area that hadn't been discussed at all that he did not like. So Wayne has finally been scheduled for a PET scan. He will have it Saturday, and on Monday we will finally have the whole picture.

Our oncologist has seen people with the same cancer Wayne has beat it. He has two former patients who had inoperable lung cancer with inoperable brain tumors who are still alive and cancer free seven years after their treatment. As long as it isn't in the bones or anywhere else, he is still going to try for the cure. The radiologist-oncologist was really surprised about the orders for Wayne's lungs. He doesn't like to do lungs and the doctors here don't usually do that, but also, they don't really see this advanced cancer as curable. I am so glad we got the one who does. So if he orders radiation for Wayne's lungs then that's what we want. He also wants to concurrently do a low dose of chemo. Amanda knows which drugs they are, but one is taxol, interestingly enough. He will have the radiation five days a week for seven to eight weeks and the chemo once a week for about the same amount of time.

However, if the PET scan shows there is cancer anywhere else then they will do very aggressive chemotherapy. Radiation makes him a little tired, but I think aggressive chemotherapy would really do him in. Our dear friend, Denise, was diagnosed with end stage three colon cancer almost two years ago. She had surgery where they thought they got it all, but it was in her lymph node and on the move, so she had this really hard stage four chemotherapy and it was really hard on her. She has still not recovered from all the side effects.

And when we met with the radiologist-oncologist, he said that the fact that Wayne's balance is getting better is a sign that the radiation is working and the tumors are shrinking! Yeah! He has started to titrate the steroids down. If any symptoms do come back, then he will have to go back up though. We are hoping that by the end of the two weeks, the tumors will be shrunk completely, never to return.

In other news, because we were working for rent, we are needing to move. Originally, we had talked about staying only three months anyway, so it's not a problem and in fact will be better for us because as much as we love Leavenworth, driving back and forth to Wenatchee every day is wearing on us, and especially on Wayne. So we will be looking for an apartment in Wenatchee or East Wenatchee, and hope to move within a week or so. I absolutely hate moving, so we will try to find a place where we can stay for a long time.

I am so proud of how Wayne is handling this. He is optimistic and is still laughing and cracking jokes. He is choosing to fight as hard as he can while keeping up his sense of humor. And we have found a great side effect of the steroids—he's putting on a bit of weight and for the first time since I've ever known him, he has a tummy. He also has a great shaped head so that even bald, he looks pretty good! I am glad, however, that he won't lose his facial hair.

I am sorry I have taken so long to get this up and going, but now that it's up, it will be much easier for me to update. I think Amanda sent out a link to her face-book page, where she has posted pictures of our hair cutting party, with Wayne in a mullet, and a Mohawk before being bald. Just in case, here it is again.  http://www.facebook.com/album.php?aid=2626878&id=10739049&l=ce249aeb5b

I will try to upload pictures as I can.