We finally made it home from the hospital around 7:30 PM last evening. It was a VERY long day, with a lot of the "hurry up and wait" processes that we've grown use to in the way medicine is currently practiced. Susan's mediport had a one-way clog and that slowed down the process considerably, and delayed the start of chemo. That delay, however, enabled us to see Dr. Rogoff in the hospital, which was very comforting to Susan. He's confident that the new, enhanced TPN he's prescribed will greatly help Susan over time.
Last night Bob the nurse came by to make sure we were still OK with the TPN process. Because Susan had had her glucose tested in the hospital she asked Bob to test it at home, since she's very concerned that the TPN might be inducing a sort of diabetes. Sure enough, the reading was high. As a result, I was off to Walgreens this morning to buy a blood glucose monitor, which the nurse Tanya instructed us how to use when she stopped by at noon. Susan learned how to do her finger prick, and take the reading using the fancy meter that I bought. Today, unlike last night, her readings were in the normal range. We'll keep an eye on it, but I'm hopeful that all will be OK in this area. Unfortunately, in the area of side effects from the taxotere, things were not OK today. Susan had a lot of nausea dispite the anti-nausea pills. Also, she experienced quite of bit of flu-like pain in addition to the usual pain associated with the disease. She's hopeful that these will all subside and she'll be up to attending church tomorrow. As always your prayers for her comfort--both physically and spiritually--will be appreciated.
After the blood transfusion & stepped-up TPN Susan is feeling a whole lot better today. She reluctantly agreed to have chemo in the hospital tomorrow. I say reluctantly because I detect that she attributes the down week with the chemo last Friday. This may or may not be the case in fact.
I'm finishing this blog here Friday morning. Just talked to Susan and she had a pretty good night, albeit with many interruptions as they sampled blood throughout the night. We hope to have her home this afternoon after chemo is completed.
Blogger has been down and I'm short on time now, so I'll omit the details. Susan went back to hospital yesterday afternoon where it was decided she had a urinary tract infection. While there she will get a boost in TPN, and 3 units of blood. She is still slated for chemo on Friday. More later.....
Last night the domino effect was fully in place. All went well in my preparations to start Susan's TPN. We got to the very last step where I'm supposed to flush her port line with 10cc of saline solution. I attach the syringe, push on the plungger and nothing happens. I make sure that her clamp is in the off position and try again. The back pressure against my thumb is high, but I manage to slowly push 3 cc in. Then Susan complains "it's burning." So I call Bob the nurse and he asks me to try a few other workarounds to no avail. "I'll be there in half an hour," he says. Thirty minutes later he arrives, finds the same problem and concludes that somehow the needle that goes into her port has dislodged. He takes out the needle and replaces it with another one--a fairly involved process which was scheduled to happen today anyway. (Port accesses are only good for one week.) We get her all hooked up again to the TPN, and then as part of his process he takes her pulse and blood pressure. Conclusion: pulse is very high, and blood pressue is very low. He rechecks. Same answer. "I'm required to call the doctor if the BP drops this low." He does. The doc says, "go to the ER and get it checked out."
Fully expecting her to be admitted, we pack a few things and head down to the now familiar Med City ER. After the usual tests, doctor conferences, etc. it's concluded that she was dehydrated--despite the TPN--and her hemoglobin is way down. Dr. Savin is called and he indicates that she probably needs some more units of blood, but gives us the option of going home and getting them during daylight hours. In the meantime the liter of fluids they were giving her while we were waiting for the diagnosis brought her BP up and her pulse down. They release us, we head home and start the TPN at 1 AM. At 7:30 AM we are awakened by a phone call from Cheryl, the other home health care nurse who wants to know what's going on. She has to be rescheduled because the TPN won't be done until 1 PM. So as I write this, we are waiting for the TPN to be finished, for Cheryl to come, and for Savin's office to get back to us about scheduling the transfusions. I'll try to keep you posted as best I can in my sleep deprived state....(Yawn).
The last few days have been down ones after the good week last week. Susan continues to battle nausea and increasing pain. These symptoms might be due to the taxotere treatment, or they could be the disease itself. It's too early to tell. Although the TPN treatments have been going well--except for one I botched Sunday night--her weight continues to decline. We don't know if it's a real weight loss (down to 91.0 this morning) or the digital scales we are using that we inherited from my mom, who got them as part of her treatment for congestive heart failure. (For my mom, the doctors were concerned about weight gain due to fluid retention, whereas for Susan it's weight loss due to the disease that's the issue.)
Susan says that she is feeling spacey today. Nonetheless, we had a good visit from the granddaughters and their mom this morning. Also, Jamie is staying with us while her mother is out of town. This afternoon, Susan is pretty much conked out on the couch recovering from the morning excitement. Tomorrow the home health nurse comes to change out her port access and take blood. Then on Thursday we visit with the gastroenterologist regarding how the TPN is going. Friday is the big day with visits to the urologist to check the stints, and then have chemo at 1 PM. Your faithful prayers are appreciated for all of the above.
PS: to those who have called us and left messages, I apologize for not always being able to pick up to talk to you in person. Particularly around dinner time I have to do some fairly delicate operations associated with TPN and I can't answer the phone. Please know that we really appreciate your taking the time to call, send cards or email, and I hope eventually to get back to each of you in person. Thanks!
We had a very good visit with Dr. Savin today. We asked him some very tough questions about whether the pain of the new proposed taxotere treatment was worth the gain. In his view a weekly, low dose treatment could actually improve Susan's quality of life, and could even produce a big benefit in retarding the disease. He promised that should he find that the treatment was no longer beneficial and/or the side effects too onerous that he would let us know and work with us on palliative care as needed. Shari, who was with us during the interview, observed that "Dr. Savin really knows what my sister needs." She was very impressed with his comments, as were Susan and I. We took that peaceful feeling that came from our interview to be a sign of the Lord's leading to go forward through this open door--at least for two treatments. After leaving Dr. Savin's office we then proceeded to the chemo room where Susan had her first treatment. So far there have been no side effects.
The other major milestone was yesterday's first TPN treatment. Bob, the home health care nurse, walked me through all the steps and then came back tonight to make sure I could pass his "exam." I did. The first TPN--running from 7 PM last night to 7 AM this morning--was OK except Susan had to get up a lot in the night because of the 1.2 liters of fluid she was receiving. They say that her body will adapt to this eventually.
So all-in-all it has been a good week, and we are fairly optimistic about Susan increasing her strength in the next few weeks. Thanks to all of you who were praying with us about these things.
Computer geeks know the term to mean "do nothing." Unfortunately, that best describes our visit to Dr. Savin today: he wasn't there! Somehow his schedulers messed up and by the time we got to Med City he was in Plano and double booked. Fortunately, he had a cancellation on Friday, so now are scheduled to see him then at 10:15 AM. Hopefully, he will actually be there. In the meantime the request for prayers for wisdom about what to do next still stand.
Since our afternoon suddenly became open, and Susan was looking and feeling really good, she, Shari and I went tooling around doing some shopping and finally ending up at the local Sonic for rootbeer floats. It was just like old times. But then, we are old people....(Correction: I am an old people, the girls are still very very young.... Be sure and tell them I said that!)
TPN.
Tomorrow is the scheduled visit with Dr. Savin followed by chemo. Susan may or may not elect to have the chemo depending on what Dr. Savin tells her. We will especially appreciate your prayers for wisdom about this decision.
Things didn't come together fast enough between Aetna, the new infusion group (DHAT) and the new home health care agency (Presbyterian Home Health) to allow TPN to start today. Because of possible chemo tomorrow, TPN is now delayed to Thursday. In the meantime Susan will continue to get daily Mg infusions from the present group (Option Care). The nurse is here reaccessing Susan's port while I type this. She is also making "suggestions" to him about how he should access her port. Sound familiar? That's why we call her "the Oracle."
My delay in updating this page has actually been a positive one: I didn't have time because of a "weekend of feasting," to use Biblical language. David & Elizabeth joined us for the weekend, and their visit really energized Susan. In addition, I can't help but think that the daily hydrations are also helping. For the last two nights we've had all 16 family members together to celebrate various birthdays, father's day, etc. Through it all Susan has managed to maintain her alertness and has been relatively free of severe pain. Once again she was able to attend church today.
Last Thursday we consulted with a gastronenterologist named Dr. Rogoff. He was a very compassionate and thorough physician, and Susan liked him. He would like to start Susan on TPN (total parenteral nutrition) which is basically giving her nutrition through a direct infusion through her mediport. Tomorrow we decide either to go into the hospital to do a quick start on TPN, or stay home and use home health care to give a slower start. I believe Susan will opt for the former because she feels it is safer. After the quick start yours truly will be responsible for keeping the pump going for a 12 hour overnight infusion every day.
Another big day this week will be Wednesday. That's the day we see Dr. Savin and Susan decides whether to go ahead with the proposed Taxotere treatment. This is controversial in the medical literature because some "experts" think that the pain of the chemo at this stage of the disease is not worth the gain--which is expected to be short term. Susan very much wants to do the Lord's will in this decision, and thus we would greatly appreciate your prayers for wisdom in making this decision. She will likely make it in real time after talking to Dr. Savin on Weds.
Our faithful friend and nurse Lisa called today with the result of the CT scan read at M. D. Anderson. Not surprisingly Dr. Kavanagh agreed that the disease had progressed during the TLK286 treatment. He also agrees with Dr. Savin that Taxotere treatments are the next best steps. I have called our nurse at Dr. Savin's office to get this set up.
In the meantime the lab tests showed that while Susan's K level has climbed to normal as a result of the weekend infusions, the Mg levels continue to be on the low side. Consequently, we are back on daily Mg infusions--this time over a 6 hour (rather than 3 hour) interval. As early as tomorrow we expect to be on TPN treatments after we see the gastroenterologist. Dr. Kavanagh, after first expressing reservations about this, is now in concurrence that TPN is a proper way to go.
After two good days on the weekend Susan had two bad days Monday and Tuesday: a lot of pain and nausea. To prevent the latter I have ordered a 3 month supply of Zofran tablets sufficient so that she can be on them continuously. In the meantime our home healthcare nurse, Pam, suggests that Susan likewise needs to take vicodin regularly BEFORE the pain starts in order to keep it in check. We're trying that today and so far so good.
Time was when there would be a couple of bad days during Susan's treatment, and then life would go on pretty much as normal. Now we get very excited when there are even two good days. Such was the case this weekend. Susan was feeling well enough that she attended church for the first time in about six weeks. Afterward she decided she wanted to go to our nearby Chinese restaurant. So we did along with 12 other family members. Also positive were the reduction in her fever--which seemed to vanish over the weekend--and the relative ease of the remaining home infusions, which I managed not to botch.
Regrettably, Monday was not as good a day as the weekend, and Susan is having to take increasing doses of pain medication--and even these are not fully handling the pain. This is a big worry. Also, her fever is back up somewhat. In addition, we are waiting to hear back from M. D. Anderson, where Dr. Kavanagh has finally received copies of the latest CT scan. This will likely be a big decision week for us, since we should hear back as to whether TLK should be continued, or she switches to Taxotere. Likewise, on Thursday, we will have the consult on TPN. We will appreciate your prayers for all the above.
All told, Saturday was one of Susan's best days in a long time. Friday night's infusion went pretty well, except I did indeed leave out a critical step at the end. When I suddenly remembered it, I startled Susan by turning on all the lights after she had gone to bed and then troubled her with having to do the two syringe flushes that I had omitted. She seemed no worse for wear, however.
We slept in (for us) Saturday morning, and as the day went on she didn't seem to have as much pain and nausea as on recent days. We had two visits from the granddaughters and in between Shari, Megan and Jamie came over for dinner. Susan really seemed to be energized by the visitors, and she even ate a little better than usual, including some Mg-containing guacamole. Only after Saturday night's infusion did she start crashing, and had to take pain and nausea pills before retiring. We are grateful for this otherwise good day, and hope that there will be some more. Another ray of light is that she has had no substantial fever for two days.
This evening, Wanda, the home health care nurse, came to our house to start Susan's infusions, and to train yours truly in the intricacies of infusion technology. I admit I have a Ph.D. in science, but I'm afraid that's inadequate for my current job as "nurse Dishman." For example, here's a bit of an exchange between myself and Wanda--Susan's "two" nurses.
Wanda: Using an ordinary quarter give the set screw a half turn to lock the cassette in place.
Me: Is that to lock the battery in place?
Wanda: No. That has nothing to do with the battery. It's the cassette that interfaces with the IV tubing tied to the special spike that enters the infusion bag.
Me: Then what's the story with the battery?
Wanda: Every day you have to take out the old battery and replace it with a new one.
Me: What do I do with the old one?
Wanda: Throw it away. After replacing it you will need to reset the pump by accessing the screen menu on the LCD screen. Remember to reset the RESVOL to the proper level, press start, respond to the 13 questions that will come up sequentially with the proper answers, and then the pump will automatically start.
Me: How should I answer the 13 questions?
Wanda: It will be obvious. Now stay with me: when the first bag is finished disconnect the tubing from the patient and place the special red cap on the end of the tubing. Then flush the patients port with saline and then heparin in the proper order.
Me: Would you mind going over that again, and what about those 13 questions....
Wanda: I'll write it all out for you. In the meantime, don't forget when you install the new bag tomorrow night that you have to step through the same set of questions on the menu as you did tonight. Be sure and sterilize the end of the tube (patient's end) with the alcohol swab prior to connecting it to the IV tubing from the pump. We have provided you with 15 different syringes to do pre and post saline and heparin processing at the proper time and the proper order.
Me: (with eyes now totally glazed over): ...about those 13 questions.....
Actually, Wanda is a very nice lady, and there really weren't 13 questions on the LCD screen--only 4 or 5. And I THINK I can handle the job, but it ain't simple! Please pray for me that I won't mess up the process. Susan will get three one-liter bags of Mg and K for 3 hours each tonight, tomorrow and Sunday. Hopefully this will help her feel better. Today she's felt pretty good except for two severe spells of pain and nausea, one in the morning and the other in the afternoon. Next Thursday we will (finally) get in to see the gastroenterologist who will supervise the TPN. This will be none too soon since Susan is now only eating a little cheese cake and pureed hard boiled eggs with mayonnaise.
Yesterday we got more information from Dr. Savin's office. He agrees with the plan to do TPN (nutrition through Susan's mediport) and will be connecting us with a gastroenterologist. He also plans to do single-agent taxotere as opposed to the combo with gemzar. He thinks the latter would be too hard on her weakened system. Through the gastro guy we plan to arrange home health care for both the TPN and hydration/Mg/K infusions. In the meantime the CT scans from Med City didn't make it to MDA, so Lisa is trying to track them down. Susan's pain and nausea seem to be increasing: much more vicodin and zofran the last few days. On the other hand her fever is somewhat less. Things tend to move at a glacial pace regarding home health, etc and we are nearing the weekend so I imagine not much will happen on these various fronts until next week.
I forgot to mention in the blog below that Jim Hewlett himself and our own Pastor Dave both had prostate cancer. In God's grace they are both doing so well that I almost forgot that they, too, are cancer sufferers.
After a very rough evening of nausea and pain, Susan had a pretty restful night. Today we hope to hear more about yesterday's blood test, home health care and perhaps even an input from MDA about whether future TLK treatment is in order.
Readers of this page have heard me speak often of Judy Hewlett, our faithful "chauffer" to Love Field and back during our trips to Houston. Judy and Jim are our dear friends and fellow members of Town North church. Judy has had much practical experience with MDA, since she spent several years there--literally sleeping on floor--with her son Greg, who had a type of adolescent cancer from which he eventually recovered. However on Friday, Greg--now 35--learned that he had stage IV colorectal cancer. This was devestating news not only to Greg and his family, but to all of us who are his, and his wife Christine's, friends. Greg has begun his own blog at (www.hewletts.org).
With this latest news I can't help but reflect on how many lives in our congregation, and in our denomination, have been impacted recently with cancer. Our close friend Harrell Jones died of colon cancer in 1996. Kristen Day, in her twenties, died from brain cancer. Our Christian brother Bob Bagwell is likewise fighting brain cancer. Belle Homme had lymphoma, which (praise God) is now in remission. Two prominent preachers in the PCA have died recently from liver cancer: James Montgomery Boice, and Rodney Stortz. Then there are Susan and Greg struggling with this devestating disease. These struggles do indeed test our faith. It would be easier at times to give in to the pessimism of our age and conclude that the universe really is a hostile place where we human beings appeared strictly by chance from random forces that did not have us in mind. Except for one thing: these sufferers themselves show a faith and a trust in the Lord that INCREASES with their sufferings. Many philosphers pose the "problem of evil," wherein we are challenged to understand how a loving and all-powerful God could create a universe where an evil--like cancer--can exist. But for me the bigger "problem" philosophically is "the problem of good." If the universe is random, how do we explain the self-evident goodness of a Susan or a Greg? Why would goodness--and our appreciation of it--exist in a truly random and chaotic universe?
Which brings us back to the fundamental truth of the Christian faith. God Himself entered human history in the Person of Jesus Christ to not only demonstrate perfect goodness, but also to bear the consequences of the evil in a fallen universe in His own body. As Paul puts it: "He who knew no sin was made sin for our sakes." Thus, for Christians, suffering an illness like cancer is in a sense an opportunity. An opportunity to experience that same test that Christ Himself confronted when on the eve before His crucifixion He cried out to His Father: "Let this cup pass from me; nevertheless, thy will not mine be done." My testimony of observing this process first hand in the case of Susan is that the weaker in body she becomes, the stronger in spirit she appears.
Today was a demonstration of both the weakening and strengthening process. Once again we journeyed to Med City where as an outpatient Susan had infusions of Mg and K. This helped her feel better in many ways, while at the same time the abdominal pain and her fever increased. It was great having Shari go with us and help pass the 3 - 4 hours. Over the next few days we hope to have some conclusions to several issues including: more TLK or something else; home health care for periodic infusions; whether the stents are doing their job in preserving Mg and K; and whether home TPN for nutrition would be appropriate. As always we appreciate your prayers for Susan, and as you have time would ask you to join us in praying for all the folks mentioned above. Thanks!