Yesterday, Grandma went to the hospital with heart attack symptoms. The initial EKG looked fine and the diagnosis was that fluid build up in her lungs may have caused her to feel as if she was having a heart attack. Her vitals were fine and tests were to be done last night. She remained in the ICU.
Some of the tests that came back last night / this morning indicated that Grandma did have a serious heart attack and was having kidney problems.
This morning around 6:30, the Doctor told Peter that Grandma's heart-rate was dropping. He went into the ICU, held her hand and said he loved her. Then she went to her eternal rest. Praise God for the gift she has been to so many for 99 years.
"Surely, goodness and mercy will follow me all the days of my life, and I will dwell in the house of the Lord forever." -- Psalm 23
Please pray that even in this difficult time, Dad and Mom experience deeply the unchanging goodness and mercy of the Lord.
That’s the summary of Susan’s first post-surgery period. The 2nd and 3rd shift nurses did a good job ensuring that she received adequate pain and nausea medications, and she basically slept the night away with little complaint. Even yours truly got a pretty good night’s rest on the couch next to her bed. (Taking a benadryl helped!) This morning she is still sleeping pretty well, considering she has a neck tube and a nose tube. I can tell the latter bothers her because she keeps pulling on it as if to say, “what’s this doing here?” The nurses say it will come out in a day or two. All-in-all, this was a much easier recovery process (so far) than the one a year ago after her massive 6.5 hour surgery.
Mom's surgery to remove the restricted parts of her intestines was a success. Pop walked with her to the operating room and left her around 11:30 this morning. She finally went into the operation at 1:30. At 3:30, Dr. Munoz came up to the waiting room to de-brief us.
Out of the possible outcomes, this was the best. Dr. Munoz removed about 10 inches of small intestine. Only about 1 unit of blood was required, and the trauma to Mom was so "small" that she is not going to be admitted to the critical / intensive care unit. She should be arriving back in her room in about 15 minutes.
Dr. Munoz thinks she might be able to go home in about 7 days, and she should be able to go to Houston for chemo about a week after that.
While the outcome from the surgery was good, the recovery still won't be pleasant, so please pray for the Lord's comfort for Mom. She needs to begin eating (hopefully in 3-4 days) so she can regain her strength for the travel to and from Houston.
Also, pray for Pop. It's really hard for him to see her suffer, and he's going to be pretty busy taking care of her and trying to employ the house cleaning skills he's acquired in the last 37.6 years of marriage.
Mom still has a lot of tumor inside. Please pray for the tumor growth to be abated long enough to get to M. D. Anderson for the clinical trial.
Sorry for no update this morning, blogger went down.
Dr. Munoz spent an extended time this morning going over the findings from yesterday’s study, and explaining options to us. He was both straightforward yet compassionate as he made his explanations, including a nice diagram of the intestinal tract.
The study shows that Susan has several “strictures” along a portion of her small intestine near where it connects to the large intestine. These strictures are causing a partial blockage and undoubtedly are due to tumor. He proposes performing a two hour surgery tomorrow to either 1) cut out the diseased section or 2) bypass it altogether. The choice will depend on what he finds when he opens her up. Susan has tentatively elected to go ahead with the surgery since it seems the best of various options. As the doctor put it, the blockage will only get worse with time as the tumor grows, so now is the time to address it while she’s still reasonably strong and comfortable. The hope is that this will buy her some additional time so she can start the TLK286 chemo down at M. D. Anderson. He anticipates a couple of days in the CCU after surgery, then 7- 10 days recovery in the hospital. She’ll then need another couple of weeks to recover before starting chemo, so we are targeting MDA near the end of February.
Surgery of course is never fun, particularly with the preps and the recovery. What Susan hates worse of all is the intubation tube down her throat that will be required during the CCU phase. In addition the prep for the surgery is onerous: drinking the “golytely” and all its effects. At this hour (6 PM) she hasn’t been able to drink any because of severe nausea she’s had all afternoon. To counteract that she’s been given anti-nausea medicine, but this makes her sleep, adding to the inability to drink anything. We think that she can still have the surgery without the prep, but we’re not sure. The remembrance of the last surgery is a huge mountain for her to climb psychologically and emotionally.
Please pray for: 1) the success of the surgery, 2) that recovery will be rapid with minimal complications & discomfort, 3) that she will be up to starting the clinical trial in about a month. The surgery itself is expected to be a couple of hours, much shorter than the major debulking she received just about a year ago. Dr. Munoz will take out tumors that are in the region where he will be operating, but not attempt to go beyond that in order not to increase the morbidity of the surgery. David is planning to stay over (he came yesterday) to support me during the surgery. We will continue to provide updates to this page today and tomorrow as we find out more about the schedule and the progress of the surgery itself. At this writing we still haven’t received a final word on the exact time of surgery, or even if it will for sure take place tomorrow.
When Pastor Dave asked Susan today what she wanted the church to be praying for, her response was: “To experience the reality of Romans 8:28: that all things work together for good for those who love God.” Thank you for once again up holding us up in prayer, not only for the physical healing mentioned above, but also for the deeper spiritual understanding that the Lord intends for us through these tough times.
“I will sing to the Lord, because He has dealt bountifully with me.” Psalm 13:6
For those of you awaiting an update from today’s radiology report, I’m sorry I don’t have anything to share at this hour (10 pm Monday). The surgeon is doing a late surgery at a different hospital so we don’t expect to see him tonight. Hopefully he will come back tomorrow morning and tell us what he thinks. In the meantime, Susan has had a much better day today. When they took her down for her scan this morning, her 2nd (non-port) IV came out. Consequently, she had no way of receiving her Demerol or phenegren all day. In spite of that her nausea and pain were relatively mild all day. She plans to take them by regular (non-IV) prior to bedtime.
One little glitch has occurred when they tried to install a new IV. Three nurses tried unsuccessfully, so they escalated to the “PIC Team” a special team of techs that has specialized equipment to install IV’s into a central port. Unfortunately, even they weren’t able to find a suitable vein, and will have to try again tomorrow. In the process they gave her an adivan shot. We (Mark, David and I) are enjoying all the witticisms that have ensued as a result of the influence of this sedative.
We’ll update this page as soon as we have new info tomorrow. Please stay tuned.
Our overnight at Medical City was not that bad as hospital overnights go. Susan slept most of the night through--as she did the previous day--while I managed several two-hour intervals of continuous sleep at-a-time before the inevitable nurse interruptions, assorted noises, etc. Susan awoke this morning feeling much better. "Since it's only Sunday, and I feel so good, let's go on down to Houston," she said. Alas, I had to inform her that Sunday was no more and that it was already Monday.
As I write this they are just now taking her down to radiology to begin the "small intestine follow through study." She will drink a (radioactive?) substance (ugh!) and then they will watch it flow through her system. Based on that they will determine the degree of blockage. My own guess is that they will find a partial blockage, since there are already signs that she's getting some throughput. I'm not sure whether they will recommend surgery if it's only a partial.
On the good news front, I talked to the M. D. Anderson study nurse, Lisa, this morning and she was planning on us continuing in the trial whenever we can get down there. She will talk to Dr. Kavanagh about our situation today. Worst case is that Susan will need surgery, and this will delay us a couple of weeks before she can begin the trial protocol. Best case is that no surgery is needed and we can go down there later this week. Since Dr. Kavanagh will be away (at the big Gyn Onc conference in New Orleans), Lisa may be able to schedule us with his partner. In the meantime it's good to see her feeling so much better this morning and acting like her old self (e.g., more concerned about me than herself). I'll post an update later today after we get the conclusions from the study and the surgeons inputs.
Finally we appreciate the visits, calls, voicemails, and emails that we have gotten from so many of you. I'm sorry that circumstances don't allow us to reply individually, but please know that we appreciate them very very much!
Resting Comfortably
According to my dad, Susan was resting fairly comfortably and was stable last night circa 10PM. They had visits from many folks, including Mark, Angie, Kids, Megan, Bowmans, Terry, and others (sorry others!), and that was very encouraging to them. This morning will be the test to see about the blockage and what to do next.
Dr. Munoz was in to see us this morning. He believes that Susan has an intestinal blockage. He wants to do a diagnostic study to see just how bad this is. It may require surgery to relieve it. It would not be a debulking surgery, just a palliative one to relieve her current symptoms of nausea and pain. Hopefully, once she recovered from that, we could continue with the M. D. Anderson clinical trial.
She will remain in the hospital for the study tomorrow, and then we will decide from there what to do next. If surgery is required, it could likely be done this week, and then she would need 7-10 days of recovery before more chemo (such as in the MDA trial) could be done.
He also clarified the issue with not using one of the platinum drugs. In his discussions with Dr. Mirtsching they decided that another dose of platinum could make her go entirely deaf. It’s not so much the kidney blockage but the deafness they were concerned about.
Finally, Dr. Munoz says that there is a risk that should Susan vomit from the blockage she could aspirate it and then be in big trouble. To relieve this they will be putting a tube down her nose, so visitors should be prepared for seeing this. Also he says someone should be with her 24/7 to prevent aspiration from occurring. That someone is me, obviously, so I will be camping out here for the foreseeable future. The room telephone number is 972-566-4803. Room number at Medical City Dallas is 554.
Currently Susan continues to experience pain and nausea. The doctor says he actually has to back off the pain meds in order to deal with the blockage. As always, your prayers for Susan’s comfort and improvement will be greatly appreciated. Thanks.
Susan spent a restful night assisted by demerol and phenegran. She woke this morning still feeling nauseous. They've given more of the two drugs, and she's out cold with her hand still digging in her makeup bag! I'm concerned that if the nausea persists we might not be able to make it to Houston this afternoon. We're awaiting the arrival of Dr. Munoz for his inputs.
(From Mark @ 7PM) The doctors diagnosis is the best possible. They think she has "lazy intestine" and not a major blockage. She is resting more comfortably now and stable. The doctor even gave her the option to go home tonight - they chose to stay overnight for observation so that she can get rehydrated via IV for the trip to Anderson tomorrow afternoon.
(From Mark @ 2PM) Dad just called. Mom has suddenly become very sick and he is rushing her to the ER. Pray that they can stabilize her to the point that she can travel down to M.D Anderson tonight or tomorrow to be admitted. That way she can start the new treatment on Monday or Tuesday.
Thanks for praying with us!! The Lord has graciously given us this gift of approval from Aetna for Susan to participate in the clinical trial. Lisa, the research nurse, confirms that so far (since March) there has been a 50%response rate for this new drug, which is much much better than any other option we have investigated. We will travel to Houston Sunday, have her doctor visit Monday, along with labs, and then she will have chemo at 8 AM on Tuesday morning. Not only that, Aetna has indicated they will even partially reimburse us for our travel & lodging expense. Now that's a confirming answer to prayer if there ever was one! He gives more even than we ask....
There are two arms of this trial: one with chemo every 21 days and the other with chemo every 7 - 9 days. We are in the latter arm--the first has been closed since last March. Interestingly enough, no one in the 2nd arm lives in Houston, and most of them travel there from outside Texas. We are probably one of the closest participants, which verifies the excitement surrounding the particular drug, TLK286. Side effects seem pretty minimal with this trial, so that's additional good news. You can read about the initial results at:
www.telik.com/NewFiles/tlk286.html
and also at:
www.telik.com/NewFiles/pr_2002_1120a.html
Finally, if you need anything delivered to from Houston, think of the new Prize Consultants Delivery Service. We'll guarantee weekly delivery!
M. D. Anderson and Aetna have now informed me that they have not yet approved Susan for treatment after all. They spoke too soon (see below). The decision is now at the National level with the national medical director. Please pray for him to make the correct decision, which of course is the decision to approve. Thanks.
Here's a quick update as things have come together this morning:
1. Dr. Munoz was not willing to go the stint / carboplatin route.
2. M. D. Anderson called to say we are approved for treatment!
Consequently, Houston here we come. Our plan is to go there Sunday and have all the tests and doctor visit on Monday, with chemo either Monday evening or Tuesday.
Praise the Lord for opening this door just as we need it!
Even as the latest CT scan indicated a serious deterioration in Susan's condition, she continues to amaze me by her endurance and positive outlook. She continues to run errands (usually for my mom or someone else in need) and clean house just as always. The only indication that she might be unwell is that she allows me to take her out to dinner so she won't have to cook; and she takes longer naps; and she is taking more pain medication than before.
The last several days have been ones calling and waiting for call backs from various medical facilities and our insurance company. The latter has provided a case manager named Kathy who seems to be really enthusiastic about helping us cut through some of the red tape. We hope that she can deliver. We are now working with our local doctors, with M.D. Anderson in Houston, and with Yale University (and oh, yes, the NIH in Maryland) about the possible next steps in her treatment. Our top option currently is the TLK286 trial at MDA. Kathy tells us that our insurance should cover all costs associated with the trial, except for the drug which the drug company pays for. We now have to get MDA on board so that we can get Susan down there ASAP. The principal investigator, Dr. Kavanagh is slated to be out of town for a week beginning next Weds, so we have a slim window to get her to see him and approved for the trial without wasting too much time. I went over the eligibility criteria with Lisa, the research nurse today, and it appears that Susan is eligible. It requires that she have had only three "priors", i.e., prior chemos with all platinum chemos counting as one. So far she's had carboplatin/taxol, taxol alone, and cisplatin. These all count as 1. In addition to the cisplatin she had topotecan. That's 2. Then she just had doxil. That's 3. This is important, because if she now gets Gemzar, this would be a 4th and she would no longer quality for TLK286. Thus it seems important to do TLK before any Gemzar.
However, if she could take the Gemzar with carboplatin (in the hospital because of the need to desensitize her), then this would be a better choice because there is more data to support the response rate of this combination. Thus, we have asked Dr. Munoz if he would consider Susan for ureter stints to relieve the pressure on her kidneys, which then might allow her to take carboplatin again. He is to get back to us tomorrow on this.
Next in line is the Yale trial on phenoxodiol. We're still waiting for a call-back on this to see if it shows more promise than the above options. Frankly, thinking about traveling to New Haven (a pretty seedy city if memory serves) in winter is not our first choice--but we'll do it if necessary. After this, is gleevec, proven to be a silver bullet for two fairly rare types of cancer, but an unknown for ovarian. Donna at MDA, the trial nurse for gleevec there, tells me that 3 out of 9 patients have had stable disease after taking it. Unfortunately, it's unfunded. It 's not clear whether insurance will pick it up, or if we have to pay out of pocket. Alternatively, we could travel to NIH in Maryland where the gleevec trial is free.
There are even more options and suboptions involving interferon, etc. that I won't burden you with now. I'm starting to feel like the old days back at Bell Labs when I was managing several development projects at the same time. As soon as a ball is put into my court I have to get it back over the net ASAP!
Throughout it all we are continuing to have our daily prayer times and looking to the Lord for wisdom and guidance and his providential leading to just the right places. It's easy to second-guess the decisions that we made earlier, but we refuse to do so and trust that "all things work together for good for those who love God and are called according to His purpose." Thanks for praying with us about these matters.
In the previous posts I alluded to the possibility that Susan would be hospitalized to take her next chemo. That was because one of the three agents under consideration was carboplatin, to which she had a prior allergic reaction. Now that carboplatin is out of the picture (because of her current kidney problems), hospitalization is no longer likely for the chemo.
We are still awaiting feedback from the doctor's office regarding next steps. In the meantime Susan has felt relatively well this weekend--as always she conceals any discomfort and you would not know that she is seriously ill by looking at her and talking with her. My own research over the weekend has turned up two clinical trials of interest to ovarian cancer patients. One, in Houston at MDA, uses a new drug TLK286, a "smart drug" that targets the nuclei of cancer cells, that has shown good response in phase 1 trials. A second, at Yale University, involves a drug known as phenoxodiol, which has been shown in the lab to turn off the protective mechanism that cancer cells use to prevent cell death (apoptosis). We will appreciate your prayers for wisdom about treatment options that will require us making the best choice this week.
Grandma Tex's move-in of furniture went well on Saturday thanks to Dan's 24 foot Penske truck, and the physical efforts of Dan, Mark and Peter (and yours truly). Everything is all set for her to take up residence there tomorrow. She continues to strengthen as a result of the therapy assists from Kelly (the physical therapist) and Becky (the occupational therapist), as well as visiting nurse Rosemary. At her doctor's appointment on Friday we learned that in her new location she will qualify for "home doctors." This means that doctors will actually come to her in her new apartment at Appletree Court. Thus, over her lifetime she will have come full circle from the days of her youth when house calls by doctors were routine.
The surgeon has proposed a new chemo regimen with 3 drugs. Now we find one of them is unavailable because our insurance won't cover it since it is not FDA approved for ovarian cancer. The second drug is not advisable for Susan because her kidneys will not likely stand up to the challenge of its side effects. That leaves a single drug left, gemzar, which she hopes to start taking sometime next week.
Mom's move continues to Appletree Court is on schedule. Her new phone number beginning on Monday is: 972-671-8462.
I'm sorry to report that Susan's latest scan was not a favorable one. Without going into the details, the surgeon does not believe surgery is appropriate at this time. He is suggesting a major change in chemotherapy: "pulling out all the stops" as he says. This will require hospitalization--possibly weekly--due to Susan's previous allergic reaction to one of the likely chemo agents. I'll post more details as they develop over the next few days.
Hello folk, Peter here. Some of you have been waiting for the promised update with baited breath - it will be forthcoming as soon as John gets a chance to do a little typing (read: when those precious grandkids depart for their own beds).
Things have been hectic since the last post. Mom was released from the hospital on Monday afternoon and is staying with us. She continues to improve, although is now using a walker--which is quite a departure from normal for her. The new medication doses seem to be controlling her breathing problems and reducing her fluid retention substantially.
Susan continues to struggle with discomfort and digestive upsets. The surgeon has ordered a CT scan for today. We will appreciate your prayers for the results.
Quick Update
Mom continues to improve while remaining in the hospital. After being admitted on Thursday Mom continued to have breathing problems. Even eating and drinking caused her to gasp for breath. As a result she had very little to eat for several days. I'm glad to report that these hard-to-breathe episodes have lessened, although not entirely. She had two today. However, the medication along with 5 daily breathing treatments have reduced their length and severity. She even had two excursions of walking down the hall using a walker and portable oxygen. Today the internist suggested that the cardiologist may want to do a heart catherization. We're a bit skeptical about the safety of this at her age. We will appreciate your prayers for wisdom as we discuss this further in the next day or two.
Susan continues to do well after her second chemo. Unlike last time, she seems to be tolerating the doxil much better. The ibuprofen continues to help alleviate the discomfort.
Our day yesterday was interrupted by a call from the visiting nurse. Mom was having trouble breathing again. Before long we were in the doctor's office. Her conclusion after an EKG was to readmit Mom to the hospital. But to get there "legally" from the doctor's office required Mom riding in an ambulance. Shortly we heard the sirens and a fire engine and ambulance pulled up to the door. I told Mom, who was still standing at the time after dressing, that she'd better sit down and look sick so as not to disappoint the paramedics. After an exchange of comments between the doctor and the paramedics--the latter looking somewhat skeptical after observing mom's condition, we were off on a low speed ride up
Shiloh road to Baylor Garland.
As it turned out this ambulance was an emergency ambulance, and the Baylor folks should have called a non-emergency ambulance. Nonetheless we made it to the hospital OK, and soon Mom was in her own private room (312). It was a good thing. She continued to have breathing problems into today and the doctors' conclusions are that it is a further manifestation of her CHF condition. It is not unusual to have CHF patients periodically readmitted to the hospital for extra medications to reduce the fluid on their lungs. This seems to be the case now, and she is getting a battery of various medications to assist her. The cardiologist expects her to spend the weekend in the hospital, after which she should be back in a stable condition. Your prayers for her recovery will be appreciated. Visitors are OK.
Susan rang out the old year by having her second doxil treatment yesterday morning. The treatment itself went well with no immediate drug reactions. However, she spent most of the rest of the day lying down, a sign that the drug has started having its cumulative effect as she takes more of it. On Monday, she had her monthly checkup with the oncologist, and once again it was a "good news, bad news" kind of visit. The good news was that the physical exam produced no evidence of bulky disease. The bad news was that her tumor marker is now up over 1100. The doctor suggests that there could be two different reasons for the high marker. In the first, the doxil is attacking the cancer, and the latter then becomes inflamed, throwing off more CA-125 (the marker). In the second, the doxil is not working at all, and the cancer is continuing to grow as evidenced by the higher CA-125. We choose number one!
Assuming explanation number one is the correct one, the doctor wants her to continue with another round of doxil (the one she had yesterday) and then do a CT scan about the 3rd week of January to see where she stands. Until then, the next two weeks are likely to be uncomfortable ones for Susan if last month's treatment is any indication. However, we now know that it's OK for her to take ibuprofen--which was the key to battling pain when we finally figured that out last month. Her blood count has been scarcely affected by the doxil, so taking ibuprofen isn't an issue on that score. And by the way, the fact that it works as an inflammatory agent is also consistent with explanation number one above.
I am also happy to report that my mother continues to make good improvement from her recent bout with congestive heart failure. The monitoring equipment set up by the visiting nurses is working well, and the last in-home visit from the nurse had her reporting that mom is making excellent progress while continuing to live independently.
2002 has been quite a year for the Dishman family medically speaking. Susan has been battling cancer now for almost 3 years. I sometimes struggle with why she has to go through all this, particularly the pain and discomfort. In my prayers, the answer I seem to be getting back from the Lord is that, like other saints of times past, her sufferings are revealing "an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen." (II Cor. 4:17-18 ESV). That weight of glory that I see closeup in her as her husband is an incredible courage, an unwavering faith in the Lord's love for her (and us), and a single-minded desire to serve others with all the strength she has. These qualities are beyond valuing, and I am privileged to observe them first hand. As Paul says in Romans 8:18: "I consider the sufferings of this present time not worth comparing to the glory that is to be revealed to us."
On behalf of Susan and myself, I want to thank all of you as faithful readers of these pages for your prayers for us in 2002, and again ask for your continued prayers in the new year, even as we pray for all of you that nothing will separate you from the love of God in Christ Jesus our Lord!