A lot of bad news to swallow

Dr. Modi came by at the end of his day to meet with me personally in
my room.  "The cancer is progressing."

The CT they took of my chest looking for blood clots and source of
chest pain revealed something we weren't looking for.  "Multiple
pulmonary nodules" throughout right lung.  (That's my good one.)

Also, the elblow biopsy results show the same cancer has spread to my
arm.  Very rare site for this to happen.
These things make them suspect the fluid around the heart is
cancer-related.  They won't know that for sure until surgery, which is
looking more likely.
The focus now is on relieving the heart.  I will stay here in a cardio
room, under monitor, waiting to see if drugs can fix the fluid.
Tomorrow they make the call as to whether and what kind of surgery is
necessary to get rid of that fluid.

That's all I feel like writing now.
I love you my friends walking with me on this path.

Breathing easy for a while

I am back in Dallas resting and recovering with no treatment of any kind - the first such break in I don't know how many years.

The radiation seems to have done good work - the largest lymph node tumor, for example, reduced since the last scan from 4.4x2.5cm to 3.3x2.5cm.  (My own guess based on airways symptoms is that it had actually grown bigger since the first scan before it got smaller).  The question remains just how dead they are.  Size is not everything.  Some of you may remember  a couple years ago, when these nodes were called "stable" as their size remained unchanged, but a biopsy then revealed they were 99.9% dead.  ("nearly dead" - name the movie)  So at this point, time will tell how dead they are.

As for my breathing, it has improved as the left lung has indeed opened back up.  This is remarkable.  My pulmonologist had all but told me that it was not going to open again ever.  And that is how it felt.  My internal, instinctual approach to life is quite skeptical, even cynical.  But I have a hard time not using the word miraculous here.  I decided to take a simple step of faith to follow a procedure - I guess you could call it that - in the Bible where you go to the elders of the church for prayer when you are sick.  I did that and it seemed my breathing improved almost immediately.  Must be placebo or something psychological, I thought, even as I disallowed my mind to go that way.  But the improved breathing continued and now has been confirmed by the tests.  My lung is back in business.  With breathing exercises, it is supposed to improve even more.  I'm not joining any gym, but if you saw me creeping around with that cane and gasping for air, you know how much better things are now.  God gave me a break this time around, and I'm going to give him thanks.  I know there are no promises for health indefinitely, at least this side of heaven, but I'm going to take this one as a gift.

So both lungs are working, albeit not at full capacity as I've had surgery in the past on both of them and the radiation damaged them somewhat, as expected.  (that's the trade-off with radiation)  One of the tests I took at MD Anderson was a brisk six-minute walk back and forth down a hall while they watched the oxygen level in my blood.  The percentage saturation hung on in the mid-90's until the final minute when it sank to 82%.  This means if I exert myself, my body does not get the oxygen it needs for muscles, brain, everything.   So they put me on home supplemental oxygen for use at night while I sleep.  Also, I have a portable pack I may use when I feel I need it upon exertion during the day.  This oxygen has helped a great deal in overall vigor.  Oxygen is amazing.  It's better than the Cheerios in that commercial that is in my head when I reach for the oxygen.

One issue in the bigger story here is that now having used the nuclear option of radiation, I have officially used up all the FDA approved treatments for this cancer.  The weapons cache is empty.  If the cancer starts growing again, I'm looking at clinical trials for new chemotherapy.  They have a big clinic for that at MD Anderson.  Trials are just that - unproven.

Meanwhile, what do you do if you have six free weeks, with about six hours of energy a day, if you do not know if that's all the energy you'll ever be given?  The first thing I'll do is pray that this will be a very long break and that the tumors will stay very dead for much longer than six weeks.  Beyond that, I think it's actually a nice problem for the soul to have and good thing to consider.

Upcoming week of lung tests at MDACC

My breathing has shown notable improvement. Perhaps around 25% better, by a few self-test-at-home measures. I am cautiously optimistic about what that means. Is the left lung functioning again? Maybe somewhat? We will find out soon.

I have a big week coming at MD Anderson. With the help of a physician's assistant there, I have scheduled a slew of tests and consultations. I will meet with a fatigue clinic doctor, my oncologist, a phase-one clinic chemotherapy doctor, and a pulmonologist. I'll have x-rays, CT scans and lung function tests. Depending upon the direction of treatment - for either the cancer and/or the lung problems - I may also see a pulmonary surgeon and have a bronchoscopy and stent procedure.

There are so many directions this could go. I am learning (or possibly resorting) to simply take one more step forward, pursue whatever due diligence possible, pray, and not get caught up in too many "if"'s. It's not a courage thing, or some big spiritual thing. Frankly, it's just too mentally exhausting for me right now to speculate. In the sermon on the mount, Jesus said some remarkably pragmatic words, "...tomorrow will be anxious for itself. Sufficient for the day is its own trouble." I'm enjoying taking that path right now.

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My cousin and her family are heavy on my heart. Her husband was in a near-fatal car accident and may be severely paralyzed. When suffering rears its ugly face, sometimes it is so painfully swift and sometimes so painfully slow. May the Lord have mercy on us all as we cry out heavenward in our frail humanity.

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For those who follow twitter, I am planning on tweeting my way through the week at MDACC. Twitter may be a fitting technology for this sort of thing, so I'm going to give her a spin.

A little more on the lung problem

I continue to feel about the same. Happy, not sick, not in much pain, but very short on air. I bought one of those pulse oximeters to watch my oxygen level in the blood. It's hanging out in the low 90's, for those of you who know about such things. If it hangs out lower than 88, that warrants the full time lug-around-an-oxygen-tank deal. Most folks are around 98-99. Before the last couple months, mine was around 96-97, even with the two lung surgeries.

Since my last blog article, I have had one doctor at MD Anderson and a physician's assistant both tell me in email correspondence that there may actually be something they can do in case this airway does not open up. I may be a candidate for a pulmonary stent, not too unlike the kind of thing they do for coronary disease. Only it goes in an airway, not an artery. The person to decide such a thing would need to be a pulmonologist or thoracic surgeon, and they would need a recent CT scan from which to make the decision. So this is speculation now. I have a CT scheduled at MDACC in a couple weeks on Aug 17 and am going to see if I can get an appointment with my thoracic surgeon that week.

But in the meantime, I am hoping, praying, and -yes- expecting that the airway will open up as the radiation finishes off its work here in the next week or so. If that happens, there will be no need to even think about a stent.

The picture to the right was taken about a month ago. It shows the markings for aligning the radiation machine. The radiation was focussed mostly in the center of my chest.

Atelectasis

Turns out the reason I feel like I'm not getting any air is that, indeed, one of my lungs is not getting any air. The pulmonoligist called me yesterday afternoon after I got a chest x-ray and told me I have "atelectasis" of the left lung. My left lung is not functioning. He suspects the lymph node tumor has completed pinched off the left airway. The picture on the right is from wikipedia (it's not me), but shows atelectasis. The xray report reads "total opacification of the left hemithorax."

My CT scan 6/24/2010 showed that at the time, my left airway was beginning to get squeezed. That was one of the big reasons for the radiation - to kill that tumor and give me breathing space. The one ray of hopeful news is that radiation has delayed effectiveness. I still have a couple weeks for the radiation to beat down that tumor and reopen the airway. But the bad news is that if it does not open up in a week or two, he thinks it never will. In that case, we find out that the cancer had too much of a head start on the radiation.

I am not without hope that the airway could indeed open. There have been a few other small signs that the radiation is indeed working. And the doctors at MD Anderson did say that we needed to wait about a month after the radiation before scanning to see how it did. It has been two weeks.

It's like yesterday I was a manager looking in on an employee (the radiation) before a deadline to see how the job is coming along. Not well at all. "But," he replies, "its not yet the deadline." Well he better get working.

So, my praying friends, I have a specific and urgent request to you for prayer. That the Lord might open my airway here in the next week. For "in his hand is the life of every living thing and the breath of all mankind." (Job 12:10)

Radiation complete, hoping for better breathing

I chose to go forward with the radiation, and have now completed it. I went to Houston for a little over five weeks to undergo the daily treatments at MD Anderson. The doctors remained optimistic that this radiation could kill most, or even all, of the cancer in the center of my chest, where they radiated. The esophogeal pain was not too bad and is already gone. The fatigue and wear on my lungs, however, is another story.

Between the two lung surgeries in 2007 and the maximized radiation to my lung area, my breathing is in pretty bad shape. I expect it to improve, but it has been slow going. It is painful to breath deeply, or to regain my breath after just walking a bit. I'm going to see a pulmonologist at Presbyterian Hospital in Dallas tomorrow to check out why I'm still having such a hard time. I have to admit I cannot help wondering if I will ever be able to breathe freely and not constantly fear physical activity lest I cannot find air.

Air is a very good thing. I need more.

A hopeful radiation plan

I met with Dr. Crane today. He is the radiation oncologist who will lead my ratiaion therapy. He looks like he could be playing first base for the Astros. But I suppose the academian in him chose to radiate tumors instead.

He gave me a better impression than I left the hospital with yeterday. He believes he can afford to be very aggressive with the radiation. He will go after every tumor that they can see. I had thought they were just going after the immediate problem areas, where there is pressure on the airways. Due to my good response from radiation in 2005 (wow, was that five years ago?), and the fact it did not do any extraordinary damage, he believes he can give me a lot of radiation. There is increased risk with this dose I may get a third new cancer (I've had two so far in my life), but the real problem is the cancer in me now.

He believes this will almost certainly relieve my breathing and coughing symptoms. And he thinks that while it is likely there may very well be a bit of cancer left somewhere in the areas that they treat, he is aiming to get everything they can see now. His goal is to "control" my cancer such that the next problem would be "somewhere else". This could buy me even a couple years. No promises, of course.

His assistant showed me the CT in detail today. It is amazing how the airway seems only the slightest bit restricted, and only on one side. Yet sometimes lately I feel like I'm drowning. The whole system is so sensitive. It is difficult to believe that zapping all over the place with radiation could actually be a good thing.

I have a couple more appointments tomorrow. Then back to Dallas for the weekend before beginning radiation in Houston on Wednesday. Treatment will be daily for about five weeks. The side-effects are expected to be quite difficult. The esophogus gets hammered in this process, making it difficult and painful to swallow for a period of about four weeks beginning a couple weeks into the radiation. I spoke to another patient who has had similar radiation and it sounded tough. A month of pain for a couple years of life seems like a pretty good deal. Gird up thy loins, self. Have mercy, O Lord.

By the way, while I was in the hospital last week, we got an offer on our house, which we accepted. Closing and moving the remaining furniture and junk will be tricky while I'm in and out of Houston, but it will be good to get that behind us. Albeit bittersweet.