This time of the year brings back bittersweet memories for us. Three years ago yesterday our precious granddaughter (number 1) was born, and three years ago tomorrow Susan was diagnosed with ovarian cancer. It was almost as if the Lord were saying: “I’m going to have you walk a deep valley for awhile, but I am giving you this great gift to ease your pain.” Truly, our granddaughters are a delight to us. Yesterday we celebrated at Susanna’s favorite gourmet restaurant: Dickey’s Barbeque. Not only do kids eat free there (and our kids have BIG appetites), but you also get these wonderful yellow helium-filled balloons. (Cosmological Note from today’s NY Times: all helium atoms in balloons were created in the first seconds of the Big Bang, 14 billion years ago. I thought you’d want to know that….). After dinner we came back to Grandpop and Nana’s for swinging on the special tree swing in the back yard, for reading books, for riding trikes, etc. Susanna was in peak form: “Grandpop, read me a book. Grandpop, get me the trike. Grandpop, swing me higher. Grandpop, do this, do that." Lydia was not to be left out either. She wanted to read books, too, and to play the upside down game, and the rocker game. Today I am hilariously exhausted!
Susan enjoyed all the fun, and her own special times with the girls, while under orders to keep her feet elevated. (Yes, they are still somewhat swollen.) As you might expect we kept asking Susanna how old she was, and how many fingers she should hold up. She duly complied by holding up 3 fingers. Then someone—I forget who—asked her how old she would be on her next birthday. “Four!” she replied, and held up 4 fingers. Finally, after we were all played out and Susanna was getting into the car I called out to her: “Happy Birthday, Susanna.” Without hesitation she came back with, “Thank you Grandpop, I’m almost four!” I’m almost sure that Susanna has the Grandma Tex gene. (See the article elsewhere on this site: “Raising Cane.”)
Once again Susan and I want to express our thanks to all those of you, literally around the world, praying for us. Today, we are happy to report that your prayers are being answered. Here are some data in support of that:
· Susan’s magnesium & potassium level are in the normal range
· In addition her tumor marker is down even from Friday. After peaking at 1725 on March 13, it is now down to 1215 as of today. That’s a 30% reduction!
· Dr. Kavanagh reminded us that the CT scans were “equivocal”. That is 3 different radiologists got 3 different readings on the 2nd scan, so it’s not clear that the scans are indicating a progression.
· Susan was able to take chemo today.
Based on these inputs we have decided to continue on the TLK286 program for at least another 3 weeks. She will have two more TLK treatments next week and the week after, and then on the 3rd week she will have yet another CT scan (ugh!) to help determine where we are. As you who know me might expect, I keep an Excel spreadsheet with all the critical data plotted on it. The CA-125 (tumor marker) plot is very interesting, since prior to TLK286 treatment it showed an exponential rise in the marker. The tumors were aggressively increasing, as evidenced by Susan’s need for surgery to deal with the intestinal blockage. After a few weeks on TLK the plot dramatically turns over, flattens, and then heads downward. So it seems clear that the TLK has slowed down the advance of the cancer, and is perhaps even reducing it (if one believes the CA-125 plots).
Tomorrow we return to Richardson, and then will be coming to Houston for chemo on succeeding Tuesdays. Dr. Kavanagh fully expects that Susan’s Mg will crash again, and we will need another infusion via our doctors back in Dallas. We will appreciate your prayers as we set all this up this week. Thanks!
I’m glad to report that Susan is now a walking, talking magnesium repository. So much so that they discontinued the Mg pump and replaced it with a much smaller potassium pump. We fully expect that she will be able to take chemo tomorrow.
We had a great day starting with worship at Christ the King PCA, followed by a trip to Galveston. Susan enjoyed being on the beach with David and Elizabeth, and we ended our day dining outside overlooking Galveston bay next to a huge oil platform being readied to be towed out into the Gulf.
Susan’s only issue at the moment is swollen feet from all the fluid pumping she’s received. The doctors will need to do further tuning to prevent over and under hydration.
I'm glad to report that Susan's 24 hour infusion pump has been a spectacular success. In previous weeks, her blood Mg report came back in the form: "1.1L". The number indicating the units, and the "L" indicating "low." Yesterday, the reading came back "0.9C", where "C" apparently meant "critical." Today, after only 24 hours of pumping, the reading came back "2.5" with no letter at all, which means "in the normal zone." Likewise, her K level has gone into the normal range. At this rate it's almost certain that she'll have the pump turned off by this time tomorrow, and she will get chemo on Monday.
As an added benefit to our staying in Houston, our old friends Pete and Sally will be coming down from Conroe to spend part of the afternoon with us. Then David and Elizabeth will arrive from Atlanta to finish out our stay here. Thanks for praying for us, and join us in the praising the Lord for his mercy to Susan this weekend. She is also feeling better: apparently she was not only low on Mg, but also dehydrated as well. Today the scales indicated a 2 pound gain for her.
After searching many Blockbusters in vain, we finally found the film "Paris, Texas" right here in the MDA library. It's a good thing: we're going to be here awhile. Today Susan's blood test revealed that she is very short on magnesium (Mg). So much that they would not give her chemo today. Dr. Kudelka, filling in for Dr. Kavanagh, was very concerned--particularly in light of how important Mg is to heart functionality. She was also low on potassium (atomic symbol K--don't ask me why...), also important to heartbeats. So to address this, they strongly recommended that Susan be placed on a 24 hour continuous infusion pump that supplies her with both Mg and K directly into her bloodstream. This has a better chance of working than the oral route, which--as she found out--causes strong intestinal reactions. (Recall that "milk of magnesia" is a laxative. In fact, they are giving her the latter in addition to the IV form.) The pump itself is a small one that she can carry around in a "fanny pack". (Those who recall Susan's mother Helen's morphine pump will get a good picture of what it is like.) The hope is that the IV pump will quickly raise Susan's Mg and K levels to acceptable levels by Monday, at which time she will be able to get chemo. If this is the case we will likely come home Tuesday.
In spite of this setback, there was some good news today. Susan's tumor marker dropped again today, supporting the idea that the TDK is working to some degree. Also, in spite of the effects of the Mg, Susan's weight remained at 99.5. It's thus been stable for almost a month. We questioned Dr. Kudelka closely as to whether we should continue the trial, or go to another approach. He noted that once we leave the TLK trial, we can never go back--and the TLK is working to some degree. I mentioned the Japanese paper on the dual Gemzar / Taxotere approach. He retorted that the taxanes (Taxotere) are very tough on things like Mg, where she already has a problem. I also mentioned the vaccination route--they have a trial going on this at MDA. He then looked at her lympocyte level and noted that all the chemo she has had over 3 years has compromised her immune system. Thus, a vaccine has little to work with. So this seemed out as well. This seems to leave only Gemzar as a single agent, and which at best has a 20% probability of working. We will appreciate your prayers for what to do next, and for Susan's recovery from the low Mg and K. Thanks.
Ever the domestic engineer despite her illness, Susan has several projects going around the house. Reupholstering the couch, painting the bedroom, new spread for the master bed---these are just a few of her current initiatives. Perhaps the most interesting is the one that could be called "plot shopping." Given our advancing years and health issues Susan has decided that we need to determine the precise geographical location of where we will be on Resurrection Day. After careful research she linked up with "Bob the plot broker." Yes, folks---just as there are real estate brokers for houses, there is also a REAL estate broker for cemetery lots. Bob, it turns out is a retired engineer and has managed to generate a thriving niche business from the fact that many people wind up with cemetery plots that they no longer need. They inherit them, they buy them and then move to Cancun to retire, or they buy them as a couple and then get divorced, or they buy a bunch for their kids and their kids also move to Cancun, and so forth. As a result Bob has, I would say, 100 - 300 lots in places like Restland Cemetery all for sale at about half what the cemetery itself would charge you.
Thus armed with these facts Susan and I ventured out with Bob on a beautiful Monday afternoon to explore his plot availability at Restland. We trekked through sections with names like Rock Garden, Ascension Garden, Garden of Prayer (with a big monument inscribed with the Lord's prayer), Garden of the Cross (with, you guessed it, a giant cross in the center), finally coming to the Garden of the Gospels. Four plots were available quite near to a patio where there were four statues of the four Gospel writers. I had hoped the plots might turn out to be closest to John, but in fact they were nearer to Luke. But since Luke was also a doctor, and a man of ACTion, this was good enough for me. We've pretty much settled on these plots, and even asked Susan's sister Shari if she'd like to join us so we three seniors can be together on that Day just as we have been through most of life. Her response: "Let's shout together!". (I took that to be a "yes".) So unless something happens to change this, I'll be publishing the GPS coordinates of this location soon. Seriously, however, I would recommend to those readers who are considering these same issues that you explore getting in touch with a "plot broker" since there are major savings to be had. Our Bob is basically the Wall Street equivalent of a market maker for Restland lots!
So far Susan has had a stable week. We're working the issue of getting a second opinion from Susan's original oncologist Dr. Savin. His nurse is attempting to work us into his schedule down at Medical City, since he's giving up his Plano office. Our hope is that by the time we have the data in from the next CT scan in about 3 weeks, we'll know where we stand with the TLK286 and if we need to, begin considering other options such as the dual Gemzar and Taxotere treatment recently published in a Japanese paper. We'll also talk to the MDA doctor this week about OVCA vaccines. We'll appreciate your prayers for a good trip to Houston tomorrow.
"He is risen!" "He is risen indeed!" These are the familiar and ringing affirmations of Easter morning, and after the week we've had, how comforting they are. (Indeed!) As Paul puts it in that famous Presbyterian verse of Romans 8: "Those whom He foreknew, He also predestined to be conformed to the image of His Son, so that He might be the firstborn among many brothers." During a time when the fragility of our human bodies was all too evident, how great it is to look forward to that Day when we will put on that resurrected body just like our Lord's. Handel got it right: Hallelujah!
Susan and I both continue to mend--and have enjoyed getting a much-needed Sabbath rest this afternoon. This, we trust, will serve us in good stead as we journey to a family get-together later this afternoon hosted by none other than our own "All About Angie" girl! We are immensely excited about getting to see that ant that is brushing its teeth in her bathroom....(see the All About Angie Blog).
Before "blogging off" I just need to make a couple of adminstrative comments. To the webmaster: now that I'm recovered, please replace that horrible image of me with the previous angelic image of your mom. Now when I log on and see that current photo, I almost get sick again. (Honest, I am really feeling better so you can remove it in good conscience.) To Syd and Dan: thanks for your card! We have heard through the grapevine that you were wondering how to send email via this site. For your and everyone else's benefit, the easiest way is to go to the home page and look at the lower left hand corner under "connections". If you click the link "contact us" it should bring up your own email program and address it to both me and the webmaster. FYI, any one of us (except, of course Susan who is not yet email enabled by her own choice) can be reached at dishmans.net by sending email to "person@dishmans.net" where "person" is the first name of the person you want to reach. So, for example to reach yours truly, send it to:
john@dishmans.net
Happy Easter everyone!
Just a quick note to let you know that we did make it to Houston on Thursday, had chemo on Friday and returned early enough to attend Good Friday services at TNPC. It was a relatively uneventful trip. Susan's chemo went OK; her weight remained steady; and her side effects after chemo didn't seem too bad this time. Given the week we had, we took it real easy in Houston--sticking to the hotel the whole time. The only new input we got was from Carla, the nurse substituting for Lisa, who commented that Dr. Kavanagh thought that once Susan's magnesium got low, it would stay low and would have to be maintained by supplements. Ironically, once we arrived home we got a message from Kroger saying they couldn't supply us with the 500 mg of magnesium gluconate that we needed and were refunding our money. In the meantime we got another message from the melatonin supplier saying he couldn't supply us with 20 mg tablets, and he, too was canceling our order. That's the kind of week it's been! I managed to find another supplier of the melatonin--via the Internet--and have placed another order that hopefully won't be canceled. In the meantime I tried calling Taylor Drug, which specializes in off items--but guess what: they don't answer their phone and I get a recorded message. Sigh!
On the research front, I was alerted to a new attack on ovarian cancer (OVCA) via the vaccination approach. Apparently most cancer vaccines fail because they only produce a limited--in time and scope--response by one's own immune system. Researchers at Berkeley have apparently found a way around this in a very limited trial involving 3 melanoma patients and 2 OVCA patients. The trial showed that all 5 responded "favorably" to the chemical trick. But I'm uncertain as to what the next step is to actually get this approach into the clinical trial and treatment pipeline. Interested readers can check out this link:http://www.berkeley.edu/news/media/releases/2003/04/07_tcell.shtml
Thanks to David & Mark for their taking over this page while I was out of commission yesterday. (Some would say that I'll go to great lengths to get my picture posted on the home page!)
I'm improving today--even made it up here to the 2nd floor to log on to Blogger. However, I'm still pretty weak and some symptoms remain. As a result we've postponed our trip to Houston by one day. We hope to go tomorrow, have chemo on Friday, and return on Saturday.
In terms of Mark's summary of options below, we are leaning towards having Susan continue with the TLK286. Even though the "orcs" seem to be winning slightly, the TLK has been slowing them down pretty good. This seems to be confirmed by the drop in the tumor marker, even though the CT scans show some increase. We'll appreciate your prayers for wisdom about what to do next.
This afternoon we received verbal concensus from the doctors at M. D. Andersion. Doctors Choi and Kavanagh agree that the written report is the more accurate analysis of mom's condition. As you will recall, that report can be summarized as "slight progression" of the cancer. So now my parents have to decide what course of action to take. Here are some of the options they are considering:
Last night John came down with a sudden and severe stomach flu. He had to resort to one of Susan's anti nausea pills in order to function. When Mark talked to him on the phone this morning he sounded very tired and weak. Please pray that God would bless him with a quick recovery so that he can continue to care for Susan, and they can make the journey to Houston tomorrow. Also pray for Susan that she would not over exert herself in an effort to help John recover.
Sorry if you were expecting to hear something this evening. If you think back on your own Mondays after two days out of the office, you know that the amount of work to be done is more than the time allotted. That seems to be the case with Dr. Choi today. Lisa called to let us know about the delay. Most likely we'll hear something tomorrow morning. I'll post on this site as soon as there is news.
Susan had a pretty good weekend. However, today, she's pretty wiped out. It's a two vicodin day as the pain and pressure get more severe. This is not a positive sign, but I'm hoping that it is temporary. We again will appreciate your prayers.
Today as Susan was receiving TLK286 dose number 8, we asked Lisa if we could get the written report of last week's CT scan. Lisa scurried off to a nearby computer terminal, and reappeared shortly thereafter with a noticeable frown. The written report didn't line up with the oral report they had gotten last week. Lisa related how she, Dr. Kavanagh and the radiologist on duty stood together to read what they call a "wet report." (I suppose the name comes from the fact that the photographic Xray images have just come out of the darkroom, and are therefore still wet.) They all agreed that Susan's disease had not progressed from the previous scan, but was stable. This was also consistent with the fact that her tumor marker had declined.
In the written report the (new and different) radiologist indicated a “slight progression” in the summary statement, but in the more detailed section outlined ways in which the tumors around the liver and kidneys had spread. After reading it, Susan said, “this sounds bad.” Lisa was also disturbed by this because she and Dr. Kavanagh had given us good news last week based on the previous radiologist's verbal report. Now she was puzzled about the conflicting statements. She promised to talk this over with Dr. Kavanagh and get back to us. This she did yesterday afternoon via my cellphone as I was returning from my bike ride on a beautiful afternoon in Richardson. Dr. Kavanagh has declared that Dr. Choi, who is the radiologist of record on the clinical trial will read the films and make a final determination as to progression or lack thereof over the six week period. Unfortunately, she is out of town until Monday, so we won’t hear back about this until Monday afternoon. Please stay tuned for that report Monday evening.
On another note, Lisa has provided me with the two papers on melatonin which I had suggested to her and Dr. Kavanagh regarding the impact on the wasting effects of cancer. The latest paper, written in 1999, seems to show that melatonin not only helps nutritionally, but also seems to be synergistic with chemo itself, increasing the survival time markedly. In addition, it seems to reduce the impact of chemo on reduction in blood counts—which seems to be one of the few side effects of TLK286. On the basis of the latter paper Lisa encouraged Susan to start taking melatonin at bedtime. Unfortunately, this requires 20 mg per dose, which is almost 7 times the standard tablet size of 3 mg available at a place like GNC. I am searching the Internet to find sources of the 20 mg pills. In the meantime Susan has to take 6-7 of the regular pills to get the full 20 mg, on top of the magnesium and iron that she is supposed to take. This is quite a mouthful for her, but she managed to do it last evening. I’m proud of my Susie for keeping on in the face of a tough week and confusing news from the cancer battlefield.
PS: Tried to post this last night, but my Internet went down after I had typed most of the above, and of course, not saved it…..
After yesterday's post (below), Susan eventually started feeling better. She was helped by our research nurse, Lisa, who reminded her that she needed to take her reglan tablet regularly. That helped. Today, we got a bit of a scare as we were getting ready to come to Houston. Susan reported some breathlessness--which almost exactly one year ago was a symptom of a pulmonary embolism. We considered another journey to the ER. But after Susan ate something, and rested a bit, she felt much better. It's likely that this was another symptom of her shortage of red blood cells for which she is getting a weekly shot of procrit.
Thanks again to Judy H. and her limousene service, we made it to Love Field and thence here to Houston. The only glitch, our flight was cancelled. But, they managed to get us on the earlier flight. All the time we gained from that was eliminated as we got involved in a legendary Houston expressway tie-up. We've spent the afternoon watching the historic events in Baghdad--and hoping to catch a glimpse of Scott Pollock. This evening we'll probably try the local seafood restaurant that has a great lobster bisque that Susan really likes. We will appreciate your prayers for Susan's chemo tomorrow.
After 4 really good days Susan is having an off day on Tuesday: nausea and pain. We will appreciate your prayers that she will recover enough to make the trip tomorrow to MDA. We would also appreciate your prayers for Susan's cousin Jill (in California). In a freak accident she experienced a burn on her left cornea. She doesn't expect her vision to be impaired, but the healing process can be painful. Thanks.
Susan had a good weekend for the most part. She felt well enough to attend a wedding and reception on Saturday, church on Sunday, and today we "did Tom Thumb". Her driving skills are so good now that she ran down the battery on the first electric cart, allowing her to transfer to a second of a slightly different model. This gave her an additional driving thrill. She only scared me once this trip. I let out a "watch out" as she swung around a corner at flank speed barely missing a stack of cans by an inch. It didn't seem to faze her, but my heart rate got up so high that I decided I didn't need to go out on my bike this afternoon.
Medically, I believe she is continuing to improve--including her food intake and energy level. High fat yogurt is her main staple these days, with occasional mashed potatoes topped with cheese. Unfortunately, she is experiencing the prophesied side effect of the magnesium: stomach upset. Funny thing is, I seem to have that too, and I'm not even taking magnesium. Must have been the near miss at the grocery store....
“Stable disease.” These were the words of Dr. Kavanagh today after reading Susan’s CT scan. Also encouraging were the numbers on her CA-125 tumor marker, which dropped from 1700 to 1400, and her weight, which—despite the aftereffects of her CT scan—was stable over the last several weeks. “I could hardly believe it,” said Susan. “What a gift! I was steeling myself for bad news.” Our nurse, Lisa, who has joined the ranks of those praying for Susan, could hardly contain herself, and gave us both hugs. Dr. Kavanagh added, “my Gestalt of you is that you are doing better.” I agreed with that assessment. (I’ll look up the meaning of “Gestalt” later…..)
To help understand what “stable disease” means, please be reminded that the essential problem with cancer is that the cancer cells—like the miserable orcs in the Lord of the Rings—attempt to multiply ad infinitum. Opposing them are the forces of the TLK286 molecules, on a search and destroy mission. Thus, there is constant warfare within Susan’s body: orc cells attempting to multiply—versus TLK warriors attempting to kill the orcs, one cell at a time. Stable disease means that the TLK forces have succeeded in neutralizing the orcs such that for every orc that reproduces itself, one other orc dies! Way to go TLK warriors!
Not surprisingly, Dr. Kavanagh is eager that Susan continue on the weekly protocol. Thus our current plan is to continue coming to Houston on Wednesdays and have chemo on Thursdays—at least for another 6 weeks until the (ugh!) next CT scan.
The only down note in this week’s visit is a new finding about Susan’s heart, of all things. Unknown to me (she likes to spare me from unfavorable news) Susan has been having some heart palpitations over the last several weeks. An EKG prior to chemo showed some abnormality. Related to this is the fact that Susan’s magnesium is low. Dr. Kavanagh will be prescribing a magnesium pill to help her with this. It wasn’t serious enough to refer her to a cardiologist, or to delay chemo today. Hopefully, the magnesium will take care of this.
As always there are two stories here. The first is the medical story, which I’ve attempted to describe above. The second is the spiritual journey, about people all over the globe praying for us, and our gracious Lord answering these prayers in a very special way to provide healing. Once again we can’t tell you how much we thank you, the faithful readers of this page, for your prayers for us over all these weeks and months and years. Please join us in praising the Lord for His steadfast love shown again in this wonderful news.
“Bless the Lord O my soul,
And forget not all His benefits,”
Who forgives all your iniquity,
Who heals all your diseases….”
(from Psalm 103)
I'm glad to report that Susan had an excellent day yesterday--the best she's felt in a while. We went grocery shopping in the morning--highlighted by the really fast electric carts at our local Tom Thumb store which she handled adroitly, except for taking out a customer behind her in the checkout line when she did a bit of backing up. ("They shouldn't gotten so close to me anyway.") After a good afternoon's rest while I did the local off road bike trail, she was up for a great dinner and visit with Mark, Angie, Susanna and Lydia at their house. The girls were in fine form, with Susanna's ever increasing vocabulary and cute expressions, and Lydia's new fondness for playing the "throw me upside down" game with Pop-pop. This morning she's struggling a bit with nausea again: the fruit smoothie I made her didn't sit too well. Now we're packing for our long 3-day trip to MDA. We will appreciate your prayers again for the CT scan tomorrow. Susan really hates to take that barium drink before the scan, and this will tend to be a low point for her. I'll update this page as we get more information, particularly on Thursday after the doctor visit.
PS: I attempted to post this page this morning, but Blogger was down. We arrived safely in Houston and had a nice dinner out at Pappa's Seafood House. I highly recommend it to all travelers to Houston. More later....