Weather update

I've been taking cover a bit, trying to weather the tempest of symptoms and facts and experts and results and thoughts and emotions.  Thunderstorms usually present themselves more violently than they turn out.  The rain is coming down now, but I feel I can collect my thoughts enough to attempt to update everyone on what has been happening.

I'll try to approach this anatomically, by part of the body, rather than chronologically or philosophically or for entertainment value.

Lung function.  My left lung was completely shut off by a lymph node tumor this summer.  This tumor was part of the targeted area of radiation I had in June.  Over the past few weeks, I am thankfully experiencing an amazing surprise - a development one pulmonologist gave me no hope for - the lung has opened up.  This was followed by non-stop sometimes violent coughing for a few weeks, and now the coughing has reduced close to none.   I continue to use supplemental oxygen when I sleep.  It is available, too, to me upon exertion, but I rarely need it.

Heart problems.  The protective sac around my heart has fluid in it that is not supposed to be there.  ("pericardial effusion", they call it)  It was causing some alarming symptoms that landed me in the hospital for close observation for three nights.  It seemed likely they would have to do some sort of surgical procedure to relieve the pressure, but the situation has stabilized with steroids and they sent me home.  I have to take it easy and go in regularly to see the cardiologist and get an echo-cardiogram.  Other than some little pangs now and then, the symptoms have not returned in the ten days since getting out.  This fluid could be side effects of the radiation, in which case it may not worsen, or it could be something cancer-related, in which case it could worsen.

Lung tumors.  When they did a scan of the heart, they unfortunately discovered "multiple" new lung nodules in the area that was not radiated this summer.  Big bummer.  On the grand scale, this news outweighs all this other stuff.  This necessitates some sort of systemic treatment (chemotherapy) rather than locally targeted therapy (radiation or surgery).  The bag of tricks is nearly empty for this.  I will likely begin such treatment in a few weeks.  More on this below.

Elbow mass.  A tumor has developed adjacent to my ulner nerve (the "funny bone").  This has been growing in pain and size.  From an annoyance a few months ago, to loss of strength and feeling in my hand, to throbbing pain.  It threatens me daily.  Ever so slowly but surely.  This problem was deemed the most immediate by my doctors and straightforward in treating.  I began radiation on it today.  For thirteen straight weekdays, I go in for the treatment.  It is like getting an xray, but for a couple minutes rather than a split second.  I don't feel it, and it is supposed to cause only minimal side effects.  The pain could get better in days, the hand strength in weeks (including guitar playing, which is necessary for me to endure everything else), and full healing months.

Head bump.  A tiny bump on my head has grown into a painful mass over an inch wide in just a few weeks.  I was imagining the worst, so was delighted yesterday to find out the CT scan report that the problem is indeed tiny - too small, even to biopsy.  There is just swelling around it.  More importantly, it is entirely outside the skull and has not affected the bone at all.  My precious brain remains cozy and safe.  Like the elbow mass, this could be killed with radiation if it proves cancerous.  But for now, I can table the issue, take some pain pills, and concentrate on other things.   

While that is a long list, if you ask me how I am today, I'd say good.  I am in little distress and am on a plan to get the elbow pain eliminated and my hand function back.  Radiation is easy stuff, so this is like another three-week break.  The worse thing about it is having to deal with Central Expressway daily.  My friends and family have been loving me well, and, I hope, I them.   Life is becoming so precious that I don't even like to sleep anymore, lest I let any more of it slip away.  

My in-laws, the Murrays, happened to come visit me from their home in Switzerland the week I ended up in the hospital.  Christine was possibly going to come that same week, but again her circumstances kept her stuck in her own painful condition.  With my hospitalization, my plans with the Murrays for the week had to be adjusted, to say the least.  But the time together was more special, and dare I say, fun.   

Finally, another surprise development is that my senior college roommate, Joe Martins, reconnected with me after some twenty years out of touch.  We had a great time as roommates.  While we drifted apart, reconnecting was one of those natural time-travel sort of deals, transporting us right back to the days wasting time in our since-demolished dorm room.  Joe, it turns out, ended up an oncologist and has been helping me tremendously as I sort through all the decisions and tests between my Presbyterian-Dallas and MD Anderson-Houston medical care.   He came over one evening, scoured through old medical records, and may have discovered a chemo protocol I took in '05 that may not be "used up" on me yet.  Although it is the nastiest of all the treatments I've had, it provides an alternative to the purely experimental last option I had.  Final decisions have not been made yet as to what chemo I will take in a few weeks, but I am thankful for my friend and this timing.

A final thought comes from a book I recently read on suffering by poet Scott Cairns.

The very notion of the Holy Trinity (in whose image we are made) should lead us to suspect that personhood requires relationship, that genuine personhood depends upon it... My hope for healing, therefore, lies more in my becoming more of a person, and more intimately connected to others.  To succeed as we are all called to succeed, we must all come to share this hope.

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.