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.

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.

Radiation planned

The lymph node tumors in my chest are still growing at about the same rate. For example, one went from 3cm to 3.5cm. But of greater concern to Dr. Eng is my increasing shortness of breath. And with the post-nasal drip from my cold last week, the coughing has been very bad, even scary. The nodes are constricting my airways. Not good. She wants to radiate the lymph nodes and thinks that will likely improve my breathing significantly. It will be 3-5 weeks of radiation, then three weeks of recovery, then probably back to the trial chemo drug plan. I meet with the radiation oncologist at MD Anderson tomorrow to find out the details.

The coughing has subsided a bit, probably as I get over the cold. My WBC counts are still far too low - as low as they were when I was admitted into the hospital last week at Presby-Dallas. (Incidentally, I did get out after two days - didn't update the blog) MD Anderson is reluctant to put me in the hospital now, especially given I have no fever. I agree.

Right now, it's hard for me to think about anything other than catching my breath back, so the radiation plan sounds good to me.

Admitted into hospital

Quick update. I had a good time in Bethany with Christine and Mark. But the last day, developed fever. It came and went and I was able to make it back to Dallas. Yesterday, I was scheduled for chemo, but delayed it a day due to the fever, which continued to come and go. Today, I went in for chemo and instead of giving it to me, they are admitting me into the hospital because of my low white blood cell count. My doctor says I am "on the edge" and could get very sick very quickly and he wants to avoid that. I'll be a t Presby-Dallas. Hopefully, this will be short.

Trips coming up

This week is exciting because I will be travelling to Delaware to see Christine. My brother-in-law Mark is helping out, flying to meet me in Baltimore for the three-hour drive out to Bethany Beach, where Christine's folks live. It will be good to see her. Both of our health situations has us so frustratingly stuck.

Upon returning after a few days, I will go down to Houston for a checkup trip (already? yes.) Dr. Eng only wanted to wait six weeks to keep on top of things. I really hope things are stable. My cancer blood marker was down to the 6's after slowly climbing this year from under 4 to the 7's. On the other hand, I've had a couple of discouraging signs - I seem to feel some pressure, tightness, dull pain, in my chest. Either my mind's playing tricks or something is up with the cancer. Could just be from coughing a lot.

Also, I've coughed up blood several times in the past couple weeks. It was not the first time. I've done so maybe once a month for many months. At that frequency, it didn't mean much to the doctors. We'll see if this is significant now that it is more often. I must say it hits you deep. To cough and cough and then have that taste in your mouth. You know, that bloody lip taste. Only it is not a cut, but the cough. Then there's this quick, heightened, mental montage - knowing, hoping not, probably is, not again, then looking. Red. Such a let down. In the movies, it's always the first sign of a bad health storm approaching. Does it have to be?

Funny thing - this is really the first physical sign I have ever had of the cancer. All my physical problems over the past seven years have been from the treatment, not the cancer itself. Not much I can do, so I just keep pressing on, praying, enjoying, and hoping perhaps for some good news.

Erbitux not very effective

Today I met with Dr. Eng. She was as surprised as I was disappointed. The cancerous lymph nodes in my chest grew slightly, as did the lung nodule. It was a small amount - like about 10%. But the hope and expectation was that there would be a great reduction. Every chemotherapy drug I have taken - both for colon cancer since 2003 and for bone cancer when I was young - has had immediate remarkable response. Erbitux was the first to not.

Dr. Eng said this leaves us on the fence between continuing it or moving on to an experimental chemo. Since my CEA blood level, which marks the level of cancer activity, was down 4.9 to 3.5, she decided I should continue on this chemo, but I should be tested after six weeks instead of twelve. She has seen a few cases of delayed response, giving some hope the Erbitux can have some good effect yet. But never has she seen tumor shrinkage after initial response of growth. So we are hoping and praying for a stable result at the end of May.

Meanwhile, I continue taking this poison. Chemotherapy is really beginning to take a toll on me after seven years of the stuff. ("It's about time!"). My body is feeling quite beat down these days and my intestines are constantly irritated. I also visited the fatigue doctor this week and she increased my anti-fatigue medication. We'll see how that fares.

My thoughts are identical to those I had three months ago: Ecclesiastes says, "No man has power over the wind to contain it ; so no one has power over the day of his death." I'm not going to get anywhere worrying or trying to change the way things are. Nor trying to speculate what this means for the future - there is no way I could have seen the things I have been given since 2003. I'm going to continue living as I have with hope and cherishing and using each day as best I can. I've had lots of ups and downs. This is one of those downs.

Check-up coming. Lots going on.

Hi everyone. Long time no write.

I have been busy for a guy who has no energy. And thus not catching up on emails and updating the blog as I'd like.

Christine and I decided to sell our house. This was not an emotionally enjoyable decision, but I think a good one. It is part of an overall strategy to simplify life to the essentials and prioritize the best things in life. I just have so little energy with the continued treatment that little chores around the house can dominate a day. Also, I wanted to do everything necessary to sell while I am feeling relatively well in case my health gets worse. The house has been on the market about a month now. Lots of showings, but not offers. We got close on one buyer, but nothing pending right now. I am living at a new place - the Venue Apartments, by the Eisemann Center on Central in Richardson. I am not strong enough to be bouncing in and out when the house shows, so I risked going ahead and moving. Christine is back in Delaware with her parents (they spent a couple months in Florida). Her migraines have been very bad and she is requiring continual care from them.

The chemo has been rough, although different than the FOLFIRI of last year. The Erbitux really messes with the skin. I got bad acne for a while and now it seems to be going through a stage of extreme dryness. The skin problems cause discomfort and make sleeping difficult. I take it with Irinotecan, which was part of FOLFIRI, but in this scheme, I take more of the irinotecan at a time. That's the drug that causes intestinal and immune problems. Every seven days I take Erbitux and every 21 days Irinotecan. So one week out of three I get bad intestinal problems and have mouth sores (I finding those correlate with low white blood count).

Sorry I missed the NCAA tournament for those of you who enjoyed the bracket challenge in years past. I think we had done it every year of my cancer blog (since 2003!).

I have been enjoying close fellowship with friends here in Dallas involved in a new church, St. Thomas the Doubter. My long time pastor, Saji George, is the one leading the new church. This is something to which I can contribute on my sporadic schedule and from my computer through writing and reading, which are two things I can do.

Next week it is already time for the check-up at MD Anderson to see if the new chemo is effective. If so, they'll keep me on it with another three month ticket-for-life. If not, I'm not sure what approach will be next. I'll head to Houston Monday, probably returning Friday. I hope to make Sarah Hazel's art show Thurs night, so maybe I'll see some of you Houston friends there.

FOLFIRI losing it's oomph

Last week I went to MD Anderson for my three-month tests and assessment.

Looks like the run of stable scans has ended for the current chemo ("FOLFIRI"). There was about 15-25% growth in the three tumors (one lung, two lymph nodes).

Dr. Eng says its time to move to the next chemo recipe ("Erbitux + Irinotecan"). This is the last FDA-approved chemo available for me. The last trick in the bag of tricks would be chest radiation, which causes a lot of damage, but can stunt the cancer for significant time (like a year or two). So the Erbitux is recommended next.

BTW, Erbitux is the drug, of which the original FDA rejection was known by Martha Stewart who dumped her stock and ended up in jail.

The bummer about this chemo is that it has a rough side-effect. One I've never had before. It causes a bad rash, much like acne. Pretty ugly and painful. The rash continues as long as I'm on it. Plus it has much of the other bad effects digestive, fatigue, etc.

Also it causes fingernail and fingertip problems, even losing fingernails in some cases. I asked, "What about playing guitar?". "Probably shouldn't", she said. ugh. That was something I was not prepared for.

It is disappointing to move to this last chemo. The one I've been on has worked as I've taken it off and on for six years - way longer than just about anybody they've treated. Me and FOLFIRI had a very long love-hate relationship, but its over. Certainly a bummer.

Please pray the Erbitux will have as long and succesful of a run as the FOLFIRI. Dr. Eng says one man has been on it for four years. Also, my prayer is that there would be new chemos. There is one that just closed (ugh-missed the window) in phase 1 trial. Perhaps it will work well and be available when I'm through with Erbitux.

There is a DNA test you can take to see if your cancer is likely to respond well (shrink) to Erbitux. They don't bother giving it if this test predicts it will not. I took the test about a year ago. My cancer is predicted to respond. It is good I am even in this group at all.

Dr. Eng wants a break from chemo first. She recommends two weeks off chemo altogether. I begin Erbitux Feb 16. So I get a bit of a health-building break.

Ecclesiastes says, "No man has power over the wind to contain it ; so no one has power over the day of his death." I'm not going to get anywhere worrying or trying to change the way things are. Nor trying to speculate what this means for the future - there is no way I could have seen the things I have been given since 2003. I'm going to continue living as I have with hope and cherishing and using each day as best I can. I've had lots of ups and downs. This is one of those downs.


Dolce
On top of all this, Dolce died on Jan 30. She was a wonderful dog to me and Christine for 18 years - and we got her grown. So she was about 19 years old. She stayed snuggly with her luxurious coat until the end. She was such a wonderful companion to Christine all these years of laying in pain. She was one of a kind. Here's a couple posts with her pics - here and here.