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Update on Carol
Thursday, Nov 29, 2007, 7 pm
Although Carol was quite weak when I wrote the posting yesterday, she gained strength as the day progressed yesterday. She had the full regimen of treatment mentioned in yesterday's lengthy posting. She is quite weak, but is up and around (slowly). In her words, "I feel so blah." But in my opinion, she really looks great.
One of the patients here is a young professional classical singer from Cypress. (We meet some very interesting people here from all over the world.) She is doing a concert tonight for all the patients. Carol may try to attend for a song or two.
Two of the Oasis doctors hosted a 90 minute Q & A for us today. One of them is Dr. Jorge Barrosa, who is one of the authors of the book (Dismantling Cancer) that was handed out free to everyone at Skyline about six weeks ago. In addition to being an M.D., he has a Ph.D. from UCSD and directs research here.
Dr. Barrosa has completed the first half (2 1/2 years) of the Oasis of Hope Hospital's new five year survivability study. When compared to the survivability of patients receiving only chemo (in the US), Oasis' statistics at this point, are considerably better. They are quite encouraged with their findings here. Candidly, so are we!
I enjoyed a vigorous walk on the beach after the sun had gone down. In addition, I was able to get much studying done on December sermons.
These 5 days have been a good time here for Carol and me. Thank you, thank you, thank you for praying for her (and for me, too).
Wednesday, Nov 28, 2007, 3 pm
Carol and I arrived at Oasis of Hope Hospital here in Tijuana, Baja California, Mexico on Sunday evening at 7 pm. She was considerably stronger than she was the first two times we have come here.
On Monday, her treatment was minimal. However it went into high gear on Tuesday. (For those of you interested in the Oasis treatment, see the postings on Sept 2-13. Or you can go to www.oasisofhope.com and download the book Dismantling Cancer.)
The treatment begins with approximately 300cc of her blood being put through an ozone process in order to add oxygen to the blood, and then through a special ultra violet light tube. She then received Pentoxifilin, followed by 30 grams of Vitamin C by IV, followed by Kemdalin (also by IV), concluded by the final Vitamin C by IV, which must begin 90 minutes after the conclusion of the initial Vitamin C infusion. During this time, she is on an O2 tube.
This procedure places the tumor under oxidization stress, moving it out of its survivable "comfort zone." On previous visits, Carol has received Perftec by IV which consisted of carriers that are 100 times smaller than a red blood cells. They can bring oxygen through strictured areas that a blood cell cannot pass. On this visit, Pentoxifilin has been substituted for the Perftec.
The goal is to get oxygen to the tumors, which are hypoxic (oxygen deficit). Cancer thrives in a oxygen free areas. When the Vitamin C and other above mentioned items coalesce at the tumor, they convert into hydrogen peroxide, which is lethal to tumors.
In addition, she is receiving approximately 60 supplements a day. The purpose of some of the supplements, in part, is the opposite of the oxidization stress. Some of them result in what is called redox, or bringing the oxidization process down. The result: the tumor is forced outside its narrow range of survivability—both at a high level, and then at a low level.
When Carol was here on previous visits, this regimen proved to be very hard on her. In addition, she came to Oasis on the previous trips (Sept 2 and Oct 21) in a much weaker condition. In fact, she was so sick on the Oct 21 visit that I came very close to having to cancel it. She was barely able to get into the car to bring her here.
This trip she arrived in considerably greater strength. And she went through Tuesday's protocol with much great strength. However, as of this afternoon, it has weakened substantially. She will have treatments Thursday and Friday, and then we come home at that point.
One noticeable improvement: every time she comes here to Oasis, her appetite increases substantially. She loves the enormous variety of organic fruits and vegetables, along with vegetable drinks. The cafeteria provides amazing variety of highly beneficial foods.
Yesterday I attended a lecture by Dr. Francisco Contreras. This is only one of many lectures provided for patients and companions (who stay in the same room as their patient). For those of you that are Skyliners, you may recall that he spoke at Skyline on a Sunday night about six weeks ago. He is a superb communicator. I have heard him repeatedly, yet I learn so very much more on this complex topic each time I hear him.
Oasis of Hope Hospital strongly desires that patients be in an informed position to make decisions. They value the concept of enlightened patients, thus much emphasis is put on cancer education.
Oasis does not treat the tumor (cancer). They treat the patient. This means that decreasing or elimination of the tumor is not the overarching goal. Comfort of the patient is.
They are adamant about not being a cancer victim. They strongly promote becoming a cancer victor. To the doctors here, the "victor" is not dependent on the size of the tumor.
Allow me to explain. If a patient has a tumor that is destroyed, but yet the patient continues to live in fear, that person is a true cancer "victim."
Let us suppose that a patient does not successfully get rid of the tumor, but continues to have a healthy lifestyle, and is pressing positively forward in life, that person is a "victor." He/she has not allowed a victim mentality to consume them.
They recognize that some tumors can be destroyed by chemo, but kill the patient in the process. Thus they focus on making certain that the treatment is not too harsh. In other words, if a patient has a tumor for twenty years, but controls its growth while enjoying a high quality of life, they consider that a great victory.
Tragically, many such tumor eliminating treatments also kill the patient. In some circles, that might look like a success since the tumor is gone. But as we all know, that would certainly not be a success.
Thus they treat the patient, not the tumor. The first question is not how large the tumor is, but how is the patient feeling. What quality of life are they enjoying.
In San Diego, Carol will need to have chemo round 6, scheduled for Tues, Dec 4. In addition, she is being scheduled for the liver MRI. And finally, she will need to have a colonoscopy to examine for strictures. So December will still be a busy medical month.
I have been able to get some exercise, study and rest here. Oasis represents a peaceful place for us. "Oasis" is the correct name for this loving center.
I worked out in a fabulous, nearby gym on Tuesday (something I have rarely been able to do during this season). And yesterday, I took a vigorously paced two hour walk on the beach. In addition, I am studying for December's sermon series.
We are so very grateful for your prayers. Thank you SO MUCH for caring for Carol.
Saturday, Nov 24, 2007, 11 pm
The last post was on Tuesday, thus we will give you a Wed-Thur-Fri-Sat update, along with some news regarding this next week.
Carol had a superb Wed (Nov 21). In fact it was the most active day she has experienced since June 18 (before the first surgery). She came to me several times during the day and said, "see, I am actually up—working." She surprised herself with how good she felt.
On Thursday, Thanksgiving Day, she felt considerably weaker. However she still had a great Thanksgiving. A Skyline family INSISTED in providing us the entire Thanksgiving dinner. And I mean entire! It was an incredible meal! What a feast!
Friday, as well, was a good day for her. I am not suggesting that she was active. She was not. But it means so much to us that she is able to lay on the living room sofa and read or talk or listen to music or watch TV.
It was not all that long ago that the house seemed continually quiet. Too quiet. She could not talk much. She did not read or watch TV or even listen to music.
She would lie still most of the time. The house seemed dark. In fact, it was dark. She was up only a few minutes a day. And she went to bed by 8 pm each night.
One sign of her gaining strength is her robust shouting during two Big 12 games today—Saturday. This afternoon OU (she attended the University of Oklahoma) beat OSU. She was overjoyed. I could hear her yelling for her alma mater from my study where I was trying to work on a sermon!
When I came home from church tonight, she screamed her approval when KU (that’s Kansas folks, not Kentucky) scored in what proved to be a fruitless attempt to hold onto their #2 ranking against Missouri (previously ranked #4).
I am so thankful for her resuming at least partial "normality!" So very thankful. Men or women, if your spouse is yelling their approval (or disapproval) for/against their favorite team, value that. I praise God Carol has the strength to do that! In fact, cherish the fact that they can get up, go to church or the store, cook a meal, clean the house, drive a car or go to work. I will NEVER EVER take such things for granted again. Never!
We are in discussion with Carol's doctors regarding the number of chemo treatments she needs. As you know, we have been told that she would receive eight rounds of chemo. (She has received five thus far.) However, there seems to be no substantive evidence that eight is necessarily better than six.
One might think that if six treatments gives one 100% of impact, then eight would give one 133% of impact. It does not work that way.
There is in the chemo regimen (along with many other issues in life) the phenomenon of the law of diminishing returns. In other words, eight rounds of chemo do not deliver 33% more positive results.
I do not know what the scientific studies show but, for sake of illustration, let us suppose that it delivers only 10% more positive impact. That small 10% positive result must be compared to the increased toxicity in the body.
In other words, the rewards must be weighed in light of the risks. The bottom line is that it is unsettled at this time whether she will have only six treatments, or continue to eight. In the event that six is the total number, she would only have to go through one more round. That would be such welcome news to her. We will keep you informed regarding that.
As you know from the last posting, we are waiting word on an upcoming liver MRI. That procedure is critical with regarding to not merely the number of rounds of chemo, but the application (IV or IV with IP) as well.
Shifting topics, I told you in my novel-length email last Tuesday night Nov 20 (in case you have not read it, it contains a boatload of medical info re: Carol) that I would be resting these last few days. As noted, the recent two week span was one of the few times during Carol's illness that I battled deep fatigue. I felt—in spite of enormous, wonderful help—like I had hit the wall.
Ordinarily I can only sleep under perfect conditions (quiet, no people around, etc.). However, I fell asleep in a padded chair in our living room, during halftime of the Dallas Cowboys Thanksgiving Game, with 12 other family members around me visiting, watching the game and playing board games.
I did not merely take a nap. I really slept. For three hours! When I woke up, the TV was still on and some were watching a football game while others were playing the word game Boggle.
To my disappointment the Dallas-NY Jets game was over, although Dallas managed to pull off a win (32-3, in case you did not know) without my fan support. And I missed the first half of the Colts-Falcons game. In other words, I got rest. Lots of it! Two late mornings added to this extended afternoon siesta and I am ready to go again.
And speaking of going again, Carol and I leave Sunday evening for five days at the Oasis of Hope Hospital in Tijuana, BC, Mexico. This will be our third and final stay there.
One of the blessings of going there is that Carol eats well from a cornucopia of organic fruits and vegetables, along with exotic (and previously unheard of) fruit and vegetable drinks. Somehow she rebounds there and, as a result, is able to stabilize her weight. The doctors have been increasingly concerned about her weight loss. She dipped to 112 lbs. But we think that she has finally hit the bottom and is inching up.
For both Carol and me, our first visit to Oasis was one of marked serenity. (The second visit there would have been such except that two things disrupted the peace: the fires in San Diego, and the discovery of a liver lesion.) We are anticipating that this visit will again be a time of sensing we are in the palm of God's hand.
We will return home on Friday night Nov 30. It will be a joy to see five relatives that are flying in from Kansas City and from Orlando, Florida for the 90th birthday party of Pastor Orval Butcher, the founding pastor of Skyline Church. (This will be held at Skyline Church on Sat, Dec 1, at 1 pm. You are invited!)
My Aunt Luella Garlow Lloyd (a college classmate of Orval Butcher in the late 1930's in Kansas) and with her son Dr. Jim Lloyd (who is also winning in a vigorous fight against cancer) are coming from Kansas City.
My Aunt Evelyn Garlow Crouch Thompson (another college chum of Pastor Butcher) and her children Tom and Linda Grizzard are coming from Orlando, Florida. It is a delight for Carol and me to come home to two aunts and three first cousins!
Thank you so much for praying for Carol the way you have. She felt so good last Monday night that we took some pictures of Carol. She began clowning around and we caught it on camera. We will post it on this sight in a few days.
I think it will encourage you—those of you who have prayed so vigorously—to see how spry and feisty she looks. We are winning this battle, thanks to our wonderful God, Carol's superb medical team, and our faithful family and friends who have lifted Carol during this season.
It seems so feeble to say it, but we really do mean it when we say THANK YOU!
Tuesday, Nov 20, 2007, 10 pm
Many of you have wondered what happened to the web postings. Some have wondered if Carol’s health had deteriorated. Let me assure you that such is not the case.
Let me first give you an update on Carol. Then I will explain the reason(s) for the delay.
Carol had chemo week ago today. Considered that this is day 8, she is doing very well. Here is an update from last Thursday until today.
Last Thursday (Nov 15), we went to UCSD Medical School Cancer Center to see nationally acclaimed Surgical Oncologist Dr. Andrew Lowy regarding several questions, and for an overall 2nd opinion. (Although this 2nd opinion was originally declined, it was appealed and overturned.)
On Monday (Nov 19), we saw Carol’s Gynecological Oncologist Dr. Afshin Bahador.
Then today (Nov 20), we met at length with Dr. Andrew Hampshire, a medical oncologist. Those meetings were designed to see what all potential options are available at this stage.
My reason for going to UCSD was to see whether Carol was a candidate for HIPEC (Hyperthermic Intraperitoneal Chemotherapy) a procedure done relatively few places nationally. Dr. Lowy is well known for this procedure.
This cancer treatment is pejoratively known as “shake and bake.” In this highly sophisticated procedure the chemo is heated to 105 degrees and then pumped in and through the abdominal / pelvic regions for approximately 90 minutes.
This is normally done at the point of surgery. My question was whether or not this was a viable option post surgery. In most cases it is not, including Carol’s case. Thus the meeting brought a closure to that pursuit.
We were also trying to discern if IP (intraperitoneal) application of chemo should be pursued. Carol’s first five treatments have been by IV. The IP method allows direct application to abdominal / pelvic areas, without creating high toxicity throughout the entire system.
IV treatment can be done by itself. However, IP application is not done by itself. It is merged with IV treatment. IV is systemic. IP is rather localized.
However, it cannot be determined whether Carol’s treatment will be IV only or an IV/IP combination until the liver issue is settled. If the “spot” in the liver is a cancerous tumor, then IV treatment will continue so that it can impact the internal portions of the liver. If the “spot” in the liver is a fatty metamorphosis, then IP, along with IV will likely be used since that treatment would impact primarily the surface of the liver, which is acceptable.
Why should we care whether the treatment is IV or IV/IP? IP increases survivability, on average, by 16 months. (Note: that is “average” which means some are much longer, and others are considerably longer. Carol’s will be considerably longer—as we are aiming to see her in the top 1/10th of the top 1%. That is what we are aiming for!)
The first radiologist (Oasis of Hope Hospital) stated that the shaded area in the CT Scan was cancerous, but it was showing improvement from Aug to Oct. The second radiologist (my brother) concurred, believing the chemo was creating necrotic (dead) tissue—a very encouraging sign. The third radiologist (San Diego) confirmed it was cancerous, but contended that it was getting worse, becoming more pronounced. A fourth report, which was intended to settle the issue, came from a CT Guided Needle Biopsy. It reported “no malignancy evident” and that the darkened area was a “fatty tissue.”
It gets more confusing. A fifth specialist said, disappointedly, that it appears to be “more pronounced.” A sixth observation came from a cancer specialist soberly saying, “that needs to be looked at more.” A seventh specialist said, with equal concern, “I’d take it very seriously.” Thus we do not yet know what we are dealing with.
What is confusing is that the only core sample we have is from the biopsy. And that one says “no malignancy.” But six other sources don’t agree. Thus more procedures must be done.
As stated before, a cancerous liver lesion would mean stage 4 cancer. No lesion would leave the present staging at 3.
In the event that the liver activity is cancerous, it presents a surgical challenge. Although it is only a little more that 2 centimeters (one inch) across, there is a locational problem. The lesion is positioned next to the bifurcation in the portal vein. Its proximity to the vein would require half the liver to be removed.
Therefore a more thorough picture is needed ASAP. Carol will “leapfrog” over having a PET (Positron Emission Tomography) Scan which was suggested at one time. Carol will have an MRI, although we do not yet know when that will take place. A phone call came from one doctor’s office telling us they could arrange an MRI at the end of December. I explained that this was not acceptable; we would not stand for such a lengthy wait. Oh the fun of being a patient’s advocate!
Along the way, Carol has had other complications. Due to the massive resection done in the sigmoid section of the colon and the three feet of the small intestine, she will have a colonoscopy, to determine if there are strictures needing dilating. In addition, chemo often causes neuropathy (nerve damage) in the feet. This creates significant discomfort and pain. Thus this is having to be treated as well.
There have been extended discussions whether or not the chemo needs to go from an every three week schedule to smaller doses of a “three weeks on / one week off” pattern. Although this is unresolved, at this point Carol will continue the “once every three weeks” schedule, with chemo #6 scheduled for Tues, Dec 4.
Part of the discussions with physicians involved discussion regarded doing a laparoscopic procedure to evaluate cancer status. However, since the CA 125 markers (indicators of cancerous activity) are low (that’s good!), and since the CT Scan reveals no active tumors and since the liver biopsy came back as it did, it was decided not to do an exploratory look at this time.
As of today, the insurance company has approved an extension in the acupuncture treatments, which really seem to help her.
Carol’s strength level is increasing as we get farther from the last chemo. A few days ago, she was so week that we had to use a wheelchair. She cannot walk far, but today walked with me nearly a full block.
I mentioned at the outset of this posting that I would explain why I had missed five days of posting. First, I am sorry that some of you thought that my inabsencia meant that we had bad news regarding Carol. I should have at least written a one liner assuring everyone that Carol is doing well.
My failing to post was simply. I could not quite keep up.
This journey has had lots of unexpected twists and turns. When the Medical Oncologist today saw the extent of challenges Carol has expereinced, he said twice, “this is a complex case.” For those of you who are uninitiated, take a two second glance down this list:
Carol Garlow’s Healing Journey
Mon., June 18 – minor surgery
Tues., June 19 – 5 pm – came home from hospital
Tues., June 19 – midnight, to Emergency Room due to discomfort
Wed., June 20 – 7 am – CT Scan reveals a “mass”
Wed., June 20 – 3pm – Gynecologist Dr. Shadi Omidi explains what we are facing and arranges hospital admission
Wed., June 20 – 6 pm – Carol back in hospital
Thurs., June 21 – MRI reveals multiple masses, reported at 5:30 pm
Sat., June 23 – 1st meeting with Gynecological Oncologist Dr. Afshim Bahador
Tues., June 26 – 7 hour and 15 minute surgery takes place, in which over 100 tumors are removed, the largest being the size of an orange; the following was done:
Omentum removed (largest mass removed)
Sigmoid (S shaped) portion of colon removed
Appendix removed
Three feet of small intestine removed
Lymph nodes in pelvic area and lower abdomen removed
Peritoneum (sac which encloses the organs of the abdominal cavity) removed
Scraping of diaphragm
Tues., July 10 – Carol discharged from hospital
Fri., July 13 – in Emergency Room all day due to complications
Fri., July 20 – in Urgent Care all day due to complications
Sun., July 22 – back in Emergency Room all day
Sun., July 22 – re-admitted to hospital
Tues., July 24 – discharged from hospital
Tues., July 31 – 1st meeting with Medical Oncologist Dr. Michael Crucitt
Tues., Aug. 7 – Chemotherapy began – first of 8 rounds of chemo (approximately every 3 weeks)
Sat., Aug. 11 – Carol’s birthday
Wed., Aug. 15 – Carol re-admitted to hospital due to persistent nausea, weight loss, weakness
Fri., Aug. 17 – Carol discharged from hospital
Sat., Aug. 18 – Consult – Yeh Center for Natural Medicine, Upland, CA, Dr. Timothy Yeh
Fri., Aug. 24 – Consult – Oasis of Hope Hospital, Tijuana, B.C., Mexico, Dr. Francisco Contreras
Tues, Aug 28 – Chemo – round 2
Thurs., Aug 30 – Second visit to Yeh Center for Natural Medicine
Sun., Sept. 2-13 – Carol (and Jim) to Oasis of Hope Hospital, Oncologist Dr. Francisco Contreras
Fri., Sept. 14 – Extensive Oasis of Hope Home Maintenance program began
Tues., Sept. 18 – Chemo – round 3
Fri., Oct 5 – Blood Transfusion due to anemia (2 units)
Mon., Oct. 15 – Chemo – round 4
Thurs., Oct 18 – Neulasta or Neupogen injection to raise white cell blood count
Sun.-Fri., Oct. 21-26 – Carol (and Jim) to Oasis of Hope Hospital
Thurs. Oct. 25 – Discovery of lesion in liver at Oasis Hospital (was only now noticed now on the Aug 15th CT Scan), changing diagnosis of Stage 3 to Stage 4; however it was believed that the tumor has decreased in density from the Aug 15 reading to Oct 23 reading
Thurs, Nov. 1 – Radiologist (San Diego – Grossmont Hospital) indicates that the tumor was, in fact, getting worse (not better as thought), more defined, with greater definition
Tues., Nov. 6 – Carol’s CT and MRI scans reviewed by Dr. William Garlow, and he discovers three tumors (not merely one) were visible on June 20 scans, one disappearing in Aug 15 scan, and another disappearing in the Oct 23 scan. The one remaining lesion – viewable in all three scans – show necrotic (dead) tissue in Oct., a positive sign that the chemo is working
Fri., Nov. 9 – Outpatient at hospital for CT Guided Needle Liver Biopsy
Fri., Nov 9 – Medical provider denies request for 2nd opinion
Mon., Nov 12 – Appealed to insurance carrier; coverage of “2nd opinion” is granted
Mon., Nov 12 - Results from CT Guided liver biopsy confusing as it was “fatty tissue” that was neither ruled benign, nor malignant, thus decision to use IP chemotherapy application over IV was postponed
Tues., Nov 13 –Chemo – round 5
Wed., Nov 14 – Neulasta injection due to white cell count being at 1.6
Wed., Nov 14 – 3rd Blood Transfusion, two units, due to hemoglobin being at 7.4
Thurs., Nov 15 – 1st meeting with Surgical Oncologist Andrew Lowy, UCSD Medical School Cancer Center
Mon, Nov 19 – Dr. Bahador (Gynecological Oncologist) visit
Tues., Nov 20 – 1st meeting with Dr. Andrew Hampshire
FUTURE ANTICIPATED SCHEDULE OF TREATMENT
Mon., Nov. 26 – Fri., Nov. 30 – Carol (and Jim) Oasis of Hope Hospital, third visit
Fri., Nov. 30 – 5 Year Follow-up Program begins with Oasis of Hope Hospital
Tues., Dec. 4 – Chemo – round 6 TBA – MRI being ordered to further examine liver
TBA - Colonoscopy being scheduled for dilation purposes
TBA – Third visit to Yeh Center for Natural Medicine
Thurs., Dec 27 – Chemo – round 7
TBA – Fourth visit to Yeh Center for Natural Medicine
Thurs., Jan 17 – Chemo – round 8 (final)
This list only contains the initial visit with each doctor. In addition, I have left off all doctors visits for things other than cancer. And I have not added other types of treatments such as acupuncture.
I am writing this to honor all primary caregivers. Until recently that was only a nice sounding phrase. I have new respect for its meaning.
The following is written primarily for you, as primary caregivers. In our journey, Carol and I are somewhere between day 150 and 160 now. This is the third “season” in which I have had to do extensive phoning, reading, questioning, faxing, emailing and good ole’ fashioned insisting. The intensive period began around Nov 1 when I realized that we were uncovering questions at a much faster rate than we were discovering answers.
The result? I became very tired. Now let me be quick to say that this weariness is NOT caused by failure of people to help. I assure you all that the Skyline Church family has been PERFECT, PERFECT in helping and assisting!! The support—in every way—has been wonderful! It could not be better. Carol and I are SO VERY GRATEFUL.
There are, however, some things one cannot delegate. Most of the interfacing with doctors had to be done by me. The questions were of a nature that only I could ask.
Two of the specialists we have gone to were brand new in the loop. Therefore there were massive medicals records to be gathered from multiple sources. The law is very restrictive regarding to whom medical records can be given.
In the midst of this, I am trying to be a quasi-single parent to two teenagers. Although there is a virtual army of faithful people helping me, a 15 year old daughter and a 16 year old son need their dad. And, candidly, I have not done as well there as one should. (No, I am not “beating up on myself.” I am simply acknowledging the reality of our present situation.)
In addition to the parenting shortcomings, is the complexity of teens themselves. We need to throw in one more thing: a very messy cultural environment bent on destroying youth. And (if humor is allowed), I don’t think the creation of teenagers was one of God’s best ideas! Okay, I’m tired. I admit it.
On top of that, I love the privilege of pastoring, including teaching on weekends and being with the staff on Tuesdays, in particular. The church family, the church board and the pastoral staff have been so respectful of this process.
For some reason, the cumulative impact of all the above has caused me to be rather weary. Frankly, this is normal in a journey involving long term illness. Ask any primary caregiver.
But I am not writing this about me. I am writing this as an informative tool for all readers. Succinctly stated, do you know a primary caregiver that needs your help, your love? Seek them out. Affirm them. I get loads of help. Yet I am still very tired.
I am concerned for that one that gets no help or assistance. Please look for them.
One Skyline Church member has been giving enormous personal care to her husband for six exhausting years, through 20 surgeries. And they are going into another major one now.
One mom and dad at Skyline Church have been giving exhaustive and exhausting care to their son for a decade plus. What they go through everyday is beyond my grasp.
In other words, my time as a primary caregiver has been very short.
What brought the accelerated weariness in my case. The liver complexity shook us out of a somewhat worn pathway and forced us to navigate uncharted terrain—with great time expenditures.
Be assured, I am not discouraged. Frankly, I really do believe—as stated above—that Carol will be in the top 1/10th of the top 1% in this battle.
But I am just a bit tired. I say that to give permission for all caregivers to admit the same. It is okay. It is acceptable to be tired.
And there is another reason I feel the freedom to talk about it now. I am about to become very rested!
It is late Tuesday night. I am going to “kick back” part of Wednesday, all of Thanksgiving and much of Friday, and a portion of Saturday. The Dallas Cowboys, which are 9-1 will play the NY Jets, which are 2-8. Thursday will be a great day!
I am going to sleep late, do nothing. Simply stated, no one needs to feel sorry for me. I am going into a three day rest mode. This is wonderful. I will be doing great by Saturday night / Sunday morning when I see many of you.
Yep! I am resting. Please find those primary caregivers around you that might not have any opportunity for a Thanksgiving rest.
Sure love you all. Thank you for praying.
Tuesday, Nov 20, 2007, 4 pm
I’m sorry I have not posted anything in six days. The absence of information is not due to any health crisis in Carol as much as it is the fact that I am simply, in all of this, running far behind. I intend to post an extensive update tonight in light of the fact that Carol has seen several specialists since we last updated you.
Thank you for your patience.
Wednesday, Nov 14, 2007, 11:30 pm
Carol received her Neulasta injection this morning for white blood cells, and a two unit blood transfusion for her red blood count. The impact of chemo round five from yesterday hit her hard this morning.
By the time I took her to the hospital (9:30 am), we had to use a wheel chair. Her exhaustion from the chemo (and the transfusion) was so intense for much of this afternoon and this evening that she could barely raise her voice loud enough to talk on a phone.
In addition, we had to phone the doctors as she began fighting a fever. Fortunately in the later hours of the evening, she was slightly improved. Succinctly said, chemo is harsh!
Carol had a wonderful blessing when Dr. Timothy Yeh (Yeh Center for Natural Medicine, LA area) called to check on her, and to pray with her. He understands prayer. When he was inflicted with an incurable disease years ago, he and his wife prayed one hour every morning and one hour every evening for one year. He was miraculously healed. It was a tender moment to have him pray over Carol on the speaker phone.
My day, as has been the case for the past week, was filled with phone calls, emails and faxes to/from doctors and other health professionals. In the initial days of Carol's diagnosis, we faced this type of communication blitz, sometimes on both phones at the same time, while trying to type an email response. For some reason, we have just passed through another season of that type of communication overload. I hope it is done. I believe it is.
Part of the reason for the massive amount of communication is the attempt to analyze the liver findings. I will know much more tomorrow, but it certainly appears to me (as of this moment) that the finding regarding Carol's liver will be good news (in contrast to a few weeks ago).
Although some ambiguity is still "in the mix," I think it is being confirmed that the liver tumor was in fact a "fatty tissue" or "fatty metamorphosis." There are still unexplained aspects to that prognosis, but I believe we will know more on that tomorrow.
There is another reason for so many calls, emails, faxes, etc. We have expanded the treatment strategy from a three pronged approach (Conventional/traditional medicine, with natural medicine, with the Oasis protocol) to a four pronged approach (the fourth being the insights of a teaching/university/clinical trial based hospital.) This was caused by several important unanswered questions about the treatment strategy.
Tomorrow (Thursday) we will go to Dr. Andrew Lowy at the UCSD Medical Sciences Cancer Center. He was brought to UCSD with much justifiable fanfare, as one of the pioneers of certain treatments. I am not certain if Carol is a candidate for IP (Intraperitoneal) application of chemo, or even the somewhat newer HIPEC (Hypothermic Intraperitoneal Chemotherapy) treatment for which Dr. Lowy is known. But Dr. Lowy will help us resolve those issues. In addition, I believe we will have resolution of the liver prognosis ambiguity.
In addition, we will get to see Dr. Afshin Bahador in La Jolla on Friday. He is the gynecological oncologist that was Carol's surgeon.
Yet Dr. Bahador is more than that. He is her cheerleader of sorts, helping us to believe that this cancer, in spite of some very tough statistical odds, can be beat! He stirs such hope!
We love going to him. Some of you may recall that he has a Muslim background. He was delighted when he found out that we were part of a "faith community." When he found out Carol's prayer teaching ministry at Skyline, he joyously affirmed that fact, confident that this was a significant key to her future health.
You may recall (from past emails) that his wife is Dr. Shadi Omidi, Carol's gynecologist. She gained our respect when she insisted on a very timely and aggressive treatment on that critical first day, June 20. It was from her that I first realized that my wife had cancer. And Dr. Omidi kept encouraging us since then in numerous ways.
I called Dr. Omidi today simply to say "thank you." In what I thought would be a brief phone call, she began graciously fielding my seemingly endless questions.
Cancer is mean. It does not play fair. To defeat it, one has to "go for it" with vigor. And that is what we are doing. I admit I sometimes begin to grow weary. And at times, Carol would understandably prefer to reduce (rather than expand) the various treatments.
But we are fighting a vigorous, mutating and self preserving enemy. Thus the battle needs to be fought hard on numerous fronts.
Succinctly, our God is bigger, better and stronger than the author of sickness and disease. Healing is coming! Thank you for fighting with us.
Tuesday, Nov 13, 2007, 9 pm
Carol received round 5 of chemo today, from 9 am till nearly 5 pm. Before they started the chemo they did several tests, getting her ready for the blood transfusion tomorrow (Wed) at 9:30 am. Her hemoglobin was at 7.4 today.
Carol's white count was 1.6, thus she will receive a Neulasta injection on Wednesday morning. This is the well known $3500 shot. At that price, I am expecting her veins to be gold plated.
Carol had some wonderful visitors today at the hospital while receiving chemo. Cliff and Anne Barrows were visiting San Diego from the East Coast, so they stopped in to visit and pray for her. Cliff (as most of you know) has served as Billy Graham's right hand man, directing the music and the TV specials for Dr. Graham for 60 years.
Cliff is highly sensitive to cancer, having lost his wife Billie to breast cancer in 1994. Anne lost her husband to cancer as well. So Cliff and Anne, who married several years ago, bring much tenderness and understanding to a cancer patient. Cliff sang to/for Carol. They visited for 45 minutes and then prayed over her. Carol thoroughly enjoyed them.
(Last August, Carol and I were to speak at a conference that Cliff and Anne direct at the Billy Graham Center, known as The Cove, in the mountains of North Carolina. In late June we had to ask to be released due to Carol's illness. We are rescheduled to speak there next March. I assured Cliff that Carol will be well, up and going in plenty of time for the March conference. And she will.)
Allow me to switch the focus if I may. Tonight I saw a pastor friend of mine who, unknown to me, went to work at the Sharp Hospital Hospice Care. I asked him numerous questions about medical systems. I learned much. When I came home, I told Carol that I had run into our old friend and that he now worked for hospice. With a mischievous grin, she said, "oh, so you have now gone out and contacted hospice in my behalf?!?!?" Not realizing how my "hospice" comment had sounded, I looked quickly at her to discover that she was laughing, needling me. It is neat to be able to laugh. We do it often these days. That is good. Very good.
Speaking of laughing, may I be indulged with a story. Yesterday, a friend of mine named Tom emailed another friend named Paul, along with me. (Tom, Paul and I are in email contact almost daily.) Tom asked Paul and me, "do you know where you were 40 years ago today?" Paul and I remembered. We were all very close friends in college, though Paul was two years older, and Tom was three or four years older than me.
Forty years ago was Tom and Donna's wedding. Tom asked Paul and me to be groomsmen. Paul and I drove for nearly 24 hours from Kansas to the tiny plains town of Terry, Montana.
As the wedding hour approached, the groomsmen were getting dressed in a small hall near the church that was going to be used for the wedding reception immediately following the ceremony.
As we were donning suits and ties, we looked across the hall and witnessed a horrific and calamitous event. The multi-tiered wedding cake suddenly began to lean to the left. Before anyone of us could make it across the room to steady the "leaning tower" of wedding cake, the top two-thirds portion of the cake crashed to the floor.
Four college guys stood stunned. We knew that Donna, the bride, would be crushed. We had to "save the day." We sent one of the guys scrambling to find the cake baker in that small hamlet. In the meantime, we were determined to make wrongs right.
The three of us—Tom, Paul and Jim—performed "cake-triage" and began tenderly attempting to salvage portions of the cake and frosting from the floor. Buoyed by moderate success, we latched upon a brilliant idea. The portion of the cake which had collapsed had to be reconstructed. But with what? Not only "what," but quickly. We were running out of time. The wedding was about to begin.
Sensing that success was now within reach, we looked into the refrigerator/freezer and discovered a small piece of frozen but unused cake. We sawed of a small triangle of what felt like frozen tundra and inserted it into the section that had collapsed.
Having done that, we slowly began to place the tiny plastic columns in place and bring the sections of the cake from the floor to the waiting pedestals. Success!
Having done one layer, we began repeating it on the next level. At some point the cake baker came rushing in, quite horrified at two things: (1) the fact that the cake had "bit the dust," quite literally, and (2) the fact that we were constructing cake #2 from the floor remnants of cake #1. But upon examining our work, she realized she had no other options. We were now down to "T minus 4 minutes and counting." The nuptials were almost upon us.
Little by little we reconstructed the entire cake, piece by piece from the floor. Having sensed the urgency of the moment, we had not looked for utensils. We had no knives, spoons or forks. Thus we used our fingers, as precisely as college guys with no culinary instincts could. Finally the cake was totally and remarkably (to us at least) reconstructed.
But there was one problem. The entire back side of the cake looked like it had been hit by a truck, and had lost. That challenge was easily surmounted by slowly sliding the cake table (and I do mean slowly, as we did not want a repeat performance of a felled cake) back against the wall. This would disallow persons from going on both sides of the cake table as previously planned.
Filled with deserved pride and a sense of accomplishment, four college men raced the one half block to the tiny church building. Unlike the cake, the wedding ceremony went off as planned. Following the service, the guests gathered in the small hall for the reception. And for the cake!
The cake was admired, cut and eaten, without a single word of explanation from four smug collegians, all truly deserving of the purple heart for reconstructing a cake in the heat of battle.
There was, however, one small problem. From time to time, cake imbibers were heard to question, in the midst of the standard wedding cake compliments, "it's a bit grainy isn't it? It is almost as if tiny pieces of gravel are in the frosting, isn't it?"
We never commented or answered. We simply commented about how delicious the cake was (although we ourselves did also notice the cake seemed to have a "grainy texture" that seemed to match the floor of the rustic meeting hall of the Montana town.)
But we had done our best. We had saved the cake. We had saved the day. And to this day, we are proud.
Forty years ago, Tom and Donna got married. And they are still happily married.
But to four groomsmen, this 40th year celebration is far more than mere marriage. It is the heroic feats of human ingenuity which caused an evening fraught with potential ruin to be saved by four young Supermen.
And the story has never or rarely been told. Till now. And now, you know "the rest of the story."
What does that have to do with Carol's journey, you ask? Nothing.
Smiling.
Monday, Nov 12, 2007, 11:30 pm
Carol 's liver biopsy came back inconclusive. It was a "fatty metamorphosis" or "fatty tissue." (This is not to be confused with "fatty tumor," a more serious problem that is an outgrowth of obesity.)
The good news is that the finding was not malignant. Yet disappointedly they are not ruling it definitely benign. Thus the liver biopsy did not answer a key question.
If there is not tumor in the tumor, then chemo could be administered IP (intraperitoneal), directly into the abdominal cavity and pelvic region. Research shows that IP given chemo extends survivability over IV application of chemo by an average of 16 months. But if there was a tumor, then the IV method would need to be continued.
However, the discussion of that had to stop due to timing. We are nearly "outside the window" for delaying chemo. Chemo needs to be given every two to four weeks. Carol had, for the most part, received chemo every three weeks. She has delayed a week, waiting to see what the liver biopsy revealed. Cancer can develop a chemo-resistance if not knocked down by chemo on a regular schedule of approximately once every three weeks. The cancer can begin progressing if not addressed.
The result? We are moving forward ASAP with chemo, still by IV. Thus she will have chemo round 5 tomorrow (Tuesday) at 9 am, a procedure that takes approximately 5-6 hours.
The blood work that was done before Carol had her liver biopsy at the hospital on Friday revealed that her hemoglobin was quite low (7.5), thus she is having a blood transfusion on Wednesday at 10 am, a process that also lasts 5-6 hours.
That change of schedule meant that we had to cancel appointments with two other doctors with whom we had been waiting to meet for quite some time. Much preparation had gone into planning for those consults, so we were quite disappointed. But, "it will be alright!"(our mantra)
Let me delicately and gingerly approach another topic, one that I have not alluded to in previous postings. One part of this journey that I have not shared is the requirement to learn how to navigate insurance requirements and the conditions of the service providers (doctors group). This in itself has been a journey.
Many of you, due to illnesses, have become experts in this art form. It is not an art or science that I have cherished to learn. But I am learning. Sometimes I might write more about "learning the ropes" of this, in order to help those who will find themselves in the same situation.
The bottom line in this area is simple: the patient and closest family members are the primary advocates for the patient. Carol's doctors are competent and compassionate. But they are still doctors, not family members.
Doctors go, understandably, from patient to patient. But it is you, the family member, who is there with your spouse or loved one in an ongoing fashion. You know / sense / feel things that a doctor might not see or observe. And you are the one that knows when you must stand up and bang the drum to get proper attention for the patient.
If a patient (or a spouse or friend) wants exceptional care and information, you are going to have to insist on it. You cannot accept medical decisions as fiats. They have to be challenged, examined and sometimes, refuted. Most doctors will not resist this. Some might.
In order to receive the best possible care, the patient and/or family member needs to be highly informed, articulate, unintimidated, determined and unbending. When you are fighting the battle of the illness itself, it is doubly challenging to have the energy to fight components of the medical system.
Fortunately we have had relatively little of this. We have been very blessed with many wonderful persons and support. However, everyone has to face it at times. Carol's case is no exception.
Fear of litigation has crippled much of medical caregiving, and affects (negatively) how doctors and nurses have to respond on occasion. Trial lawyers have deeply affected every segment of American life.
Economic incentives of companies have, at times, robbed patients of needed treatments. Drug companies, with all their wonderful provisions, also have agendas that can be counter productive to good health. The FDA, with all its protection of the citizenry, also creates some interesting scenarios.
I do not state the above in an incriminating way. Nor do I care for conspiratorial theories or paranoia, as some seem to have. However, we live in a broken world, with equally broken systems. This human and systemic brokenness exists in every facet of life, including medical care.
Sometime I might write my discoveries of that arena, the battles I have had to fight to keep us moving forward on this journey. My thoughts may not be needed as so many others have described the challenges. I know this: cancer fighting is not for the faint of heart. It is war. And it has multiple fronts. And they all have to be fought at the same time.
In a practical sense, it means that all day Wednesday, all day Thursday, all day today (Monday), I was one the phone with doctors and other persons that form Carol's team of care. Questions had to be asked. Decisions had to be challenged. Appeals had to be made. Accepting a "no" was not tolerated. Candidly, these were exhausting days. And they are far from the only days we have had to experience this.
And I need to hasten to add that I am not suggesting that I, in any way, agree with Michael Moore's movie "Sicko." I don't. I am glad I live here is the US. I am thankful for the wonderful care Carol has received. And I am superbly grateful for an army of medical professionals that God is using to bring her back to health.
But the world is complex, including the "world" of medical care. And it can be overwhelming at times. But we are moving forward, thanks to your love, support and conscientious praying.
Sunday, Nov 11, 2007, 10 pm
Major news! Carol went to Skyline services this weekend, to say "hi" and a heartfelt "thank you."
On Saturday evening, she attended the end of the 5 pm service and the beginning of the 6 pm service. On Sunday morning, she came to the very end of the 8:15 am service, watched the 9:30 am service from the Green Room, making a brief appearance at about 10 am and was present for the beginning of the 11 am service. This was superbly meaningful for her.
It was her first time to be at Skyline since June 10. She cried. So did others of us. It was so neat for me to have her there.
Her strength held up quite well. She was strong enough to watch the Chargers squeak past the Colts. But in the last two seconds (when it was apparent the Charges had won), her strength totally gave out. (I am not making this up, folks. She was so exhausted then, she actually could not take a phone call.)
But praise God, she made it through a WONDERFUL day. We are so, so very thankful for our Skyline Church family. THEY HAVE BEEN ABSOLUTELY PERFECT IN MEETING OUR MANY NEEDS DURING THE LAST 146 DAYS. They could not have been better!
Friday, Nov 9, 2007, 4 pm
Carol had her CT guided needle liver biopsy today. Although we will not know the results until next Tues or Wed, she handled the process very well. She was an outpatient at the hospital from 7:30 am this morning to 3 pm this afternoon and is now on her way home. Thank you for your prayers for her today.
Next week she will resume her chemo with round #5.
Thank you so much for your prayers and concern.
Tuesday, Nov 6, 2007, 11:30 pm
Years ago when living in Oklahoma City, Carol and I would go each December with her family to the National Finals Rodeo, the "World Series" or "Super bowl" of rodeo. Although the coliseum was enormous and the event boasted of competition for 10 days, the only way you could get tickets was to purchase them a year in advance. We went year after year. I loved it!
The highlight of the evening was the last event, the bull riding competition. The key was to stay on the bull for eight unbelievably long seconds. The bull spins and turns and kicks and twists in every direction in order to cause the rider to lose his balance. The more the bull gyrates, the higher the athlete's score (presuming he stays on for eight seconds).
The object is not merely to stay on for the full eight seconds. It is to safely dismount, no small task in itself. (There is an old Chinese proverb which states "he who rides a tiger cannot dismount." Bulls are the same. Staying on is hard. Getting off can be as well. The applications of this axiom are multitudinous.)
I compare bull riding to fighting cancer. Staying on is hard. Falling off can be even worse—lethal. You can get trampled by the hooves if you get under the bull. So you hang on—for dear life, literally. You must ride out the eight seconds. That translates into many months or even years, when riding the "cancer bull."
Cancer is a bull, fighting mad, kicking and spinning. You must hang on. You want to get off. But you dare not let go. If you let go, it's over. But the alternative is very difficult. Staying on, demands all your strength.
With that analogy in mind, allow me to bring you up to date from the events since Tuesday, Oct 23. On that date, we were told (Oasis Hospital) that Carol had a tumor in her liver, a very disappointing discovery indeed. This altered the staging from Stage 3 to Stage 4, the last thing we wanted to hear. That was bad news.
Then we received what we thought was positive news: the lesion was not new. That meant we had a "baseline" to see what was occurring within the tumor. Although it had been missed in an Aug CT Scan, the Oct 23 CT Scan showed that the lesion was changing, reducing in density from Aug to Oct. In other words, the chemo was having the impact desired. That was good news.
Then on Thursday, Nov 1, we received word that the radiologist in San Diego had a different readout. He viewed the tumor as becoming more defined, having greater definition. The conclusion: the chemo is not working as desired. That was bad news.
I sent the CT Scans and the MRI CD's to my brother who is a radiologist in the Midwest. Tonight I was on the phone with him at length as he viewed the CD's.
To our surprise, he found that there was not one liver tumor, but three. That was really bad news.
(The lesion we knew about - we labeled Lesion #1 - was approximately 2.5 centimeters - or 1 inch - across. The other lesions - which we called Lesion #2 and #3 - were smaller.)
Then, as he continued to read the scans, he saw that, contrary to the June radiology report, the three lesions were visible in the June scan. This too was shocking. The tumors had existed longer than thought. More bad news.
But at least that gave us a longer "baseline" from which to track their changes. That was somewhat muted good news.
However, he made some very interesting (and positive) discoveries. Lesion #1 (the larger one we became aware of on Oct 23) had not changed from June to Aug to Oct (Holding cancerous tumors to the same size over time is considered a victory.) That was good news.
Lesion #2, a very small one, was smaller from June to August, and gone in October. That was awesome news.
Lesion #3, also quite small, was there in June but not visible in August, as best he could determine. That was superb news.
But let me return to the larger tumor, Lesion #1. He observed some necrosis, or necrotic material. In other words, the darker interior indicated a liquefying process. In layman’s terms, the lesion was experiencing some "rotting" or deterioration. That is indeed very good news.
Admittedly, readouts have a certain tentativeness to them at times, but we were ready for a victory. I said to Carol, "Thank you Jesus!" Then, in a less spiritual tone I admit, I said "I am celebrating," and promptly went to the kitchen, made some popcorn and scarfed it down as part of my victory lap.
Here is the summary. Apparently the 7 hours of surgery, the 5 rounds of chemo, the 18 days of Vitamin C-Kemdalin-Perftec-Ozone-LUV treatments, the two months of extremely strict diet, the supplements (60 a day), the herbs (3 times a day), the weekly juicing, the frequent acupuncture, the ongoing laughter therapy, the (almost always) positive, forward-looking attitude ("we can beat this!") THE CONSTANT LOVE AND SUPPORT OF COMPASSIONATE MEDICAL PROFESSIONALS, FAMILY, FRIENDS AND CHURCH FAMILY...AND HUGE AMOUNTS OF PRAYER (one of them or all of them or some combination of them) is working!
The bull is spinning. It is kicking and fighting. But Carol is staying on! The eight seconds are not up yet. But she is riding well and scoring high. One of these days, she'll be off the bull. And she will climb out of the arena a winner, to the roar of the crowd. In the meantime, keep cheering her on. The bull is wearing down—before she is.
Thank you "rodeo supporters!" She (we) need you!
Tuesday, Nov 6, 2007, 7 am
Here is Carol's schedule for the next few days so that you'll know how to pray for her:
Wednesday, Nov 7, 3 pm meeting with Gynecological Oncologist Afshim Bahador, the one who performed Carol's surgery on June 26;
Friday, Nov 9, six hour CT guided liver biopsy—outpatient;
Oasis of Hope Hospital stay (Nov 12-16) now postponed a couple weeks due to discovery of liver tumor;
Wednesday, Nov 14, 1:30 pm meeting with Dr. Andrew Lowy, Surgical Oncologist at the UCSD (University of California San Diego) Medical School Cancer Center.
Monday, Nov 5, 2007, 1 pm
A quick update of several days: Carol has done better on strength over the last few days. Having her mother here from Dallas is a wonderful blessing. She is an enormous help.
Friday was a bit of a "funeral day" for the family. Jake went with his Valhalla High School wrestling team (he does wrestling there, but is a full time student at Excelsior Academy) to the funeral of Tom Varshock (the first person burned/killed in the San Diego fires). Tom helped out on the wrestling team, and his son Richard, who has been burned over 60% of his body, was a wrestler. It is a painful story. The family needs prayer. They had no insurance on their home.
On that same day, I went (along with some family members) to the funeral of Marcus Vegh who died of cancer at age 47. As I stated in an earlier email, I was Marcus' pastor in Texas. He went on to establish ProgressiveVision, one of the most advanced strategies for sharing the gospel globally. Speakers at the funeral (at Saddleback Church) were Rick Warren, Paul Eschelman (leader of the Jesus Film movement) and others. The funeral was quite moving because Marcus had outlined the service in detail, including two video clips in which he talked to all of us. Marcus' life and death "raised the bar" for passion for Christ in all of our lives.
Carol really wanted to go to the funeral, but she was simply not able to. However on Saturday Carol was getting stronger. We are now nearly three weeks from the previous chemo. Sunday and Monday, Carol's strength seemed to be even better, once again, due to chemo being so distant in the past.
Our primary focus however is not her immediate strength level. Our concern centers upon the Thursday, Nov 1 reading from the radiologist that the liver tumor has worsened from Aug 15 to Oct 23. As stated earlier, her scheduled fifth round of chemo which was to occur today (Monday) was postponed.
She will have a liver biopsy as an outpatient on Friday, Nov 9.
Forceful, pressing, intensive and strategic prayers are still very much needed. Thank you so much.
Thursday, Nov 1, 2007, 10 pm
I have two things to share. The first one is humorous and fun. The second one is unfortunately serious.
Wednesday was a strong day for Carol. Thus she decided that she was going to go to Circus of the Sky last evening (Wed).
(For all of you who don't live in San Diego or attend Skyline Church, Circus of the Sky is Skyline's annual outdoor Halloween event, complete with multiple stages featuring aerial acrobats in awesome performances, "Elvis" performing his classics, 50's music from singers in poodle skirts, a brand new skateboard park with professional skate boarders, a large Ferris wheel and many other rides, an expansive food court, motorcycle and antique car displays, and much more. It attracted 5,000-6,000 people to Skyline last night.)
Carol could not stand the thought of not being there. Yet she knew she did not have the strength to visit with people. Remember she has not been to Skyline since mid June. She has lots of catching up to do. But visiting with people simply could not be done.
So she conceived a plan. She would dress up like a clown to make her unrecognizable, and then Dan Grant (one of the Executive Pastors) would drive her around in the golf cart, amidst the throngs of people, games, shows, food court and rides. Hopefully she would not be recognized. At least that was her plan.
Sher Prince, (another Skyliner) who is so good at engineering such crazy feats, was called upon to pull this deal off. Frankly, I was not sure if Carol had the strength for this. (She can sit or lay down, but she does not have the strength to stand more than a minute or two or walk more than a very short distance.) But she was determined.
Sher painted Carol's face and brought her the costume, then took her to the church on cue. Dan drove her around on the golf cart. I purposely stayed away from her so people would not figure out who she was. As she rode among the crowds, she threw out candy.
I could tell she was loving it because of the huge smile on her face. But that smile gave her away to many people. Most did not know it was her. But word began to spread among many. And, to be honest, I went and blurted it out, to one person after another, each time telling them, "now don't tell anyone, but that clown over there on the golf cart...is Carol. But you can't tell anyone!" Of course they did exactly what I had just done: tell people. I simply could not keep it secret.
She was supposed to stay only 30 minutes. She stayed 90. I was concerned that when I got home (about an hour after she did) that she would be totally exhausted. Not so! She had experienced so much fun. She was ecstatic about being there! She was so happy. And she was still wide awake at midnight.
That story is fun to tell. But I have tougher news. I debated whether to tell this part first. But it is a bit too serious to tell first.
We received a call from the medical oncologist informing us of the reading from the radiologist here in San Diego, comparing the changes in the liver tumor between Aug 15 and Oct 23. You may recall that Oasis Hospital (Tijuana) were the first ones to detect this tumor last week. The radiologist there viewed the differences as positive, i.e., the tumor was decreasing in density.
The radiologist (and the oncologist) here in San Diego disagree. They feel the tumor is considerably more "defined" now. It has clear "definition," as they call it, now, as opposed to the shadowy appearance in August. This means that the tumor is not responding to chemo. This lack of response would call for a more aggressive and/or different chemo strategy.
Therefore the regularly scheduled (once every three weeks) chemo that was to have been given this coming Monday, Nov 5 has been postponed. On Friday, Nov 9, Carol will go into the hospital as an outpatient for six hours for a CT Scan guided liver biopsy. The needle will go between the ribs into the liver for a core sample.
I talked to the oncologist at length regarding the radiology report. Without going into detail, I will just say that when I hung up, I felt like I had just been kicked in the gut.
We want so badly to move forward. And at times we do. Yet this journey, as all cancer fighters have experienced, has so many setbacks.
I guess the best thing for me to say is I am so thankful for so many of you who are "hangin' in there" with us. This journey is long. And it is not easy. You could give up. You could stop praying. You could grow weary in well doing. But you are not doing that. You are staying the course.
I love to bring the good news because it causes hope and faith to surge. But I guess the real measure of hope and faith is when one has to "see" the "unseen." Carol seemed to handle this new setback in stride. And I will as well. But it was a (how shall I say this?) a hard moment.
Thank you for being there! We do need you!
Pressing forward.
Tuesday, Oct 30, 2007, 11 pm
Today Carol was so happy to have her mother come see her from Dallas. She will be here until Nov 10. Carol is elated. And all the rest of us are super happy to see her. Not only is she a comfort to us all—she brought a big bag of home made chocolate chip cookies!
When Carol and her mother met, they hugged each other for a very long time and hugged. And sobbed. And sobbed some more. It is an enormous blessing to have Vivian Luckert here with us!
As if that was not enough, we had a party tonight, celebrating the 7th birthday of our oldest grandson, Riley. So a crowd gathered at our house. Riley had one request. That everyone carve pumpkins. So we did.
Some were done so creatively, with such finesse. And some were done so—how do I say this—so pathetically. (I refer to the pumpkin that instead of two eyes, a nose and a mouth, simply had a huge hole...a round hole about 4 inches in diameter! Quite different. Or I think I said it before, quite pathetic. There were no lit eyes, nose, etc. Just a huge hole in which you could see the candle and the entire interior of the pumpkin!)
And now on a much more painful note. We received word that our very good friend Marcus Vegh, age 47, (see www.progressivevision.org/update.html) died of stage 4 cancer of the throat, that spread to the lung, sinus and behind the eyes. (All of our special friends in Dallas/Ft. Worth area knew him well and loved him!)
I had been Marcus' pastor in Texas years ago. He moved to San Clemente, CA a year before we moved to San Diego. Then he and Debbie and their three young children moved to Idaho. His cancer was diagnosed last year. His memorial service will be at Saddleback Church in Orange County Friday night. (His story is filled with so much more pain than I can state here. Suffice it to say, it is one of the most grief filled cancer stories I have ever heard.)
Marcus was one of the most singularly talented Christian leaders I have ever known. And his passion? Fulfilling the Great Commission in one of the most creative ways I have ever seen. See www.progressivevision.org.
I have a reason for telling the story. Allow me to explain. This website posting was originally done to dispense information about Carol as a result of numerous received emails and phone calls from many precious friends.
Slowly the posting took on a secondary role. It grew into a blog opportunity for me to keep in contact with the Skyline Church family, and thirdly, later with persons around the nation.
Then, as I have stated once before, it morphed into a fourth and very unexpected purpose: to help and encourage other cancer patients and primary care givers, many of whom Carol and I have never met.
I am telling the story about Marcus, first, simply because we loved him dearly. We miss him badly. This has been a day of shock and deep grief and sorrow. I miss my friend.
Secondly, I am telling about Marcus because of the force, the power this type of story has on those who are in the cancer battle. When I received word, I was stunned. Fortunately I was in a meeting with some persons (Dan Grant and my son Joshua) who knew Marcus. They recognized my pain. But it was a double whammy. Let me explain.
Candidly, as you might have anticipated, it jolted my faith—badly. The faith for Carol's healing. As the others gathered around me to pray, I found my body occasionally and slightly trembling. A low volume groaning came out from deep within me, I found myself, with faith seemingly decimated crying out, "oh no, Jesus, I am afraid of the future. I cannot bear to think of what things could be ahead!" Hope seemed crushed.
It is for this reason that cancer patients often say, "if the story you are about to tell me does not have a good ending, then I don't want to hear it." They say that, not to be in denial. They say it because they need all the energy they have to be focused on healing, on health. They need faith built, not faith destroyed.
And yet, in the case of a close friend such as Marcus, there is no hiding of the "end" of this story. I will go to his memorial service on Friday evening. And I will cry. And my faith may temporarily seem to have a setback.
But then I will climb out of my "faith funk" and get going again. Then hope will slowly reemerge. And confidence will once again soar. And we will be "on the road to healing"—once again.
And we will say, "God is good...all the time." And Marcus will be cheering, one of the "crowd of witnesses," for Carol and me.