Memorial Funds for Greg Hewlett

The following memorial funds have been set up for donations in memory of Greg, for anyone wishing to contribute:

MD Anderson Children's Art Project - You can donate by calling 800-231-1580, or online using this form, including Greg's name in the field titled "Donation in Memory Of". More ways to donate are listed here, and you can specify that it is in memory of Greg when you call, fax, or mail. For more information on memorial funds, call 713-792-3450 or 1-800-525-5841.

World Vision - Donations can be made by calling 1-888-511-6443. Please be sure to mention that your donation is in memory of Greg Hewlett or give them Source Code "105429402".

Greg has gone to be with his Lord

It is with sadness that I report that Greg passed away about 6:15 am on Monday, January 17, 2011. His mother was at his side, and his last hours were peaceful and he did not appear to be suffering. More details will be posted here soon.

I apologize to people who normally receive the email updates from this site, I do not have the ability to send an update at this time. Feel free to spread the word to those you know who knew Greg.

Chemo tomorrow amidst some new evidence of cancer progression

When I consider my situation, I find it interesting to have such a sizable collection of friends who care about my situation.   On one hand, I am bewildered, and on the other hand feel simply fortunate.  I'd love to be able to deliver some encouraging words, but all I seem to have recently is disheartening news about which I can simply make observations.

This week, I had a full-torso CT scan.  The purpose for this was to serve as the baseline against which we will measure the effectiveness of the upcoming chemotherapy.  Dr. Modi called me in to discuss a problematic new finding on the scan - a small pocket of loose air in my chest - evidence of a hole in my lung ("pneumo-thorax").  That turned out to be only part of the story, as he really wanted to meet with me face-to-face to discuss the other things revealed by the scan.  He's a kind guy.  The disease is progressing, as we knew, but in places we had not known.  I now know about two tumors in my spleen and one on my front right belly.  I can feel the latter with my finger, now that he pointed it out to me.  Yuck.  This is the first time the abdomen scan has shown any cancer since the large tumors were removed surgically in 2003.  Also, there is a new nodule in my left lung, as well as some fluid build-up around my lung - "Probably malignant fluid," he said.   These places we add to the other evidence of disease from last month - multiple right lung nodules, an elbow tumor, and a suspicious bump on the back of my head.  I haven't had any chemo since the spring, so the cancer has been enjoying itself. 

It turns out that the plan remains the same - to begin chemotherapy.  Only there is all the more confidence this is the right plan.  I will be taking a combination of chemotherapy drugs called "XELOX + Avastin".  It is the most toxic combination of the various chemo regimens I have had, and is nearly the same as what I took for twelve rounds in 2005.   The hope is that this regimen still has some oomph left in it.  We'll do three rounds over ten weeks then see how it's working.  This will be my 95th through 97th round of chemo since 2003, but who's counting. 

With the various cancer-related issues brewing, the two wildcards are the fluid around the heart, which landed me in the hospital last month, and the new lung hole.  The heart fluid, remarkably, is nearly gone.  The lung hole needs to be corrected, and may do so on its own.  One theory for how it got there is that some lung tissue was weakened by this summer's radiation and then I "coughed a hole" in it last week.  If it heals on its own, that would be wonderful.  If it needs some sort of corrective procedure, it will cause big delays in treating the cancer.

Yesterday, I invited my church, St. Thomas the Doubter, over to my apartment to celebrate our first five members - of which one is me.  Don't get any grand party images here - it is a baby church, with a two to three dozen people attending.  So basically, I had a party to honor myself.  I also had them rearrange my furniture to be sick-with-chemo friendly, and set up my tree, too.  This is the kind of thing you get away with when you have cancer.  In the pic, you'll see I hung a Moravian star on the balcony.  This brings back memories of living in Philadelphia, where it is popular.  Also memories of putting one up with my sister's family on their porch in St. Louis.  

All of these medical developments leave me feeling quite empty.  Joys in life are absurd mixed with CT scans and chemotherapy.  But I'm ok with that.  What else is there to do but simply press and enjoy each day - each gift.   Love and live as much as I can.  Not much has not really changed in my strategy over the past seven years.  And, I think, should not change should I live for another seven days or seven years.

Yes, I'm in some pain, but it's not too bad with my pills.  My breathing is short, but not alarmingly.  Tomorrow morning is the IV infusion of part of the chemotherapy.  Then fourteen days of pills.  Here we go. 

Fluid nearly gone

Went to my cardiologist, Dr. Jain, today. An echo-cardiogram showed that the fluid around heart that landed me in the hospital is "nearly gone." Really? No reasons, explanations, how it got there or why it's gone. Just be glad, I guess.  She is going to have me taper off the steroids now.  And she does want me back next week for a "nuclear stress test" due to some continued chest pains I get now and again. "That's it, then?  You fixed it?"  "We'll keep an eye on it," she replied.

Tuesday is the big strategy meeting with my oncologist, Dr. Modi.  We'll set up the plan with decisions about what's next, what chemotherapy to take, whether to pursue the head growth, whether to do trials, here or Houston, etc.

As for the elbow radiation - 7 treatments down, 6 to go.  No effects yet.  Hand still numb and weak.  Oh how I'd love to play that guitar hanging on the wall.

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.