Year 2000 - Five Years
The year began with Neila visibly weaker, worsening of memory
loss and cognitive functions, and less equilibrium, but no signs of a return of
the cancer. This changed quickly when the tumor in her lung that has been
static since she finished her first chemotherapy protocol in March of 1996,
started suddenly to grow again. A moment of terror that has sent us down
the hard road of chemo once again. Index: January, February,
May, June, July, August,
||No visits or
tests. Although Neila had not visits or tests scheduled, there
were significant changes. Dr. Perkins left the clinic attached to
Presbyterian Hospital and in the future will only see patients at St. Paul's
hospital in Dallas. This was not welcome news because St. Pauls in
on Harry Hines Blvd., near Parkland Hospial, and extremely
inconvient. As luck would have it though, American Airlines,
Kendall's employer, changed insurance carriers and her original doctor,
Sharma, is on the new plan. We had switched from Dr. Sharma to
Dr. Perkins because of a change in insurance in the first place, so this has
worked out for the best.
visit. This was a routine office visit with oncologist, Dr.
Perkins. Neila had no complaints, and was very upbeat; alert, and
happy. She did blood work--which was good--and he did a brief
physcial. The next scheduled appointment is for the end of January
and will include a CT scan.
visit. The highlight of today's visit was the report from the
MRI of the head Neila did on
Monday. Essentially, the MRI showed changes from the long term
effects of radiation and some atrophy that probably just comes with
age. There was no indication of a new malignancy, nor was there
anything to sugest a neurological basis for the headaches she has been
having. Dr. Perkings gave her a couple of new
(amitriptyline) for the cramps she has been having in her feet, and
(gabapentin) to help her sleep.
visit. Because of our trip to Brazil for the Diamond Wedding
Anniversary of Neila's parents, we have been in a medical
hiatus. Neila has much improved since the last visit: she has not
done chemo since July 20, which is doublessly a very large factor in her
improvement, and the tirp was also good for her-even though it was
tiring. She has had some recurring headaches recently, so Dr.
Perkins scheduled an MRI for next month. The next office visit will
be October 19.
|Office visit. Since the August 2nd scan and x-ray revealed a stable condition there was not much else to be said. Neila will not be doing any more chemotherapy this month, and the next office visit is September 22.
CT scan and x-ray of the chest. No significant change.
Lab Work Neila passed her lab test with flying
colors today; she did not need a shot. Lab
Report has been updated.
|Lab work and
Chemotherapy: Neila's blood counts finally came up enough to complete the chemotherapy cycle she started on May 30th. The second infusion in a cycle is less rigorous and we finished in less than an hour and came home. She slept most of the rest of the day. She has lab work scheduled for the next two weeks and a CT scan is August 9th, but no more chemotherapy until after we return from Cuiabá in late August.
Today was a scheduled office visit with onoclogist, Dr. Perkins. Neila
did her lab work, but the counts were again too low to go on with an infusion.
Next week I will get the report and post it in Lab
Report. She has also lost over ten pounds ( 5kg) during the
last month. This is the fourth week she has been scheduled for the second
infusion of the current a cycle--that should have been eight days after the
first infusion on June 15-- but has had blood counts too low to continue.
If that weren't enough, she has had severe nausea the whole time and the
and Compazine®), have brought only
partial relief. It is clear that she is not tolerating the
chemo. This clinical picutre made what to do now the primary issue today
and Dr. Perkins suggested she might do only
Gemzar® once a week, or stop trying to do the second round of the combination Gemzar® plus Carboplatin.
The interum decision is to try one more time next week to do this second round,
do a new CT scan in three weeks time, and based on the results decide what to
do then. We'll seem him again August 22 after we get back from
Cuiabá where we plan to go for Neila's parent's 60th wedding aniversary.
|Lab Report Now
on the fourth week out from the last infusion and in spite of taking
three Ensure®s a day, Neila's blood counts were not high enough complete the current cycle. In an attempt to improve the situaiton we went to Presbyterian outpatient services for a blood transfusion.
|Lab Report once
again was too low to complete a chemotherapy shession. Both white blood
cell count and platelettes were too low. This is the third week out from
Neila's last chemo infusion, and raises the question of how much good it
will do if she is unable to complete a cycle. She is scheduled for
additional lab work next week, July 6th, and perhaps there will be some
improvement. I have been concerned that Neila is not eating, and after
the result today she agreed to take the dietary supplement,
Ensure®, three times a day. Nurse Jennifer told me call here immediately if there are any signs of infection or blood in her urine or stool.
showed white blood cell count too low to do a second round of chemotherapy as
had been planned, so we came home and Neila slept most of the afternoon.
I went out to get a Disable Parking permit, Chris drove in from Austin
with a van full of garage sale items, and Claudia and Rony came over for diner.
|Lab Report and
Chemotherapy. Blood counts were back to normal, allowing a regular
Chemotherapy infusion. Because her blood counts have prevented her from
doing an infusion the last two times we tried we will reset the
Gemzar® protocal (infusions on day 1 and day 8 of a 21-day cycle) back to day 1. We discussed the nausea she has been having beginning two to three days after an infusion. Dr. Perkins thinks the pattarn probably results from the anti-nausea medication they give her on infusion day, so he prescribed one Anzemet® tablet a day for five days after an infusion session. This is a very powerful anti-nausea drug of the same family as Zofran® (and very expensive; the two week supply was $775.00, of which my insurance paid all but $10.00).
|Lab Report There
was a significant reduction in platelette count (58), and the scheduled chemo
session was canceled. Dr. Perkins recommended waiting a week and doing
new lab work. Since Neila has not been able to follow the
Gemzar® protocal (infusions on day 1 and day 8 of a 21-day cycle) he will check dosage and frequency options.
wth gastrointerologist, Dr. Andrew Gottesman. Based on referral by Dr. Perkins in an attempt to tie down the source of Neila's continuing stomach and intestinal pains.
|It has been a little over a month since we had to take Neila to the Emergency Room of the hospital and she has come back remarkably, almost miraculously. In April it was beginning to look doubtful if she would live much longer and the family was concerned she might not make it to Chris's graduation and Raquel's wedding. The tentative diagnosis--that she had overdosed on some the medicines she was taking--now appears almost certain. I (Kendall), had been controlling very carefully the prescriptions she took at regular and unvarying intervals, but I had left it up to her to take the pain and sleeping medication as she felt she needed it. On the doctor's instructions I have taken away completely several medications and control closely the ones she still takes, making sure she does not go over the prescribed dose. One result is she is now able to walk almost normally now--given the after effects of prolonged steroid use--and she is coherent all the time consistent with being two years downline from Whole Brain Radiaion. The other result, the down side, is the pain and nausea associated with chemo are much worse. By keeping rigously within correct amounts, we are keeping her lucid, but in pain. I don't know which is best.
|New CAT scans of the
chest and abdomen. Results were unchanged from last series of scans on February 23rd of this year.
|Lab Report and Chemotherapy. Uneventful.
|Lab Report Improved HEG count (10.7) and platletes.
|Lab Report , Chemotherapy
Neila missed the Chemo session scheduled for last week as a result of the
unscheduled hospital stay. Happily, she has
fullly recovered from the extreme disorientation she exhibited, but is
suffering much more from pain now that they have prohibited her from taking
some of the medicines that gave her relief. [See Neila's
Medicines] Today her lab report came back with HEG count of only 8.2, so as soon as she finished the infusion we went directly to Presbyterian Oncology Outpatient for a transfusion.
Presbyterian Hospital Dr. McIntyre was on duty today, but only
confirmed what Dr. Stoub had said. She discharged her and suspended
serveral of the medicines. [see Neila's
Hospital, day 3 I talked to Dr. Stroub today. He is currently on
call while Dr. Perkins is in South Africa on vacation. Dr. Stroub
confirmed that none of the tests Neila did: blood, as well as both a CT and MRI
of the head, showed any signs of new activity or anything else that might cause
the extreme disorientation she felt on Saturday and Sunday. He did say
that of the medicines she is taking,
Restoril® are of the same family and sometimes do cause disorientation. She should not be doubling up on them. Besides those, Phenergan®
can also cause disorientation, so at this point the most likely source of the
problem are the medicines she's taking.
Restoril® are fixed daily amounts that I control (i.e., I only give her enough for her daily dose), but the Phenergan®
is used as needed so she keeps the bottle on her bedside table and takes it
when she feels like it. Although there are clear limitations to the daily
dosages, she really is no longer able to keep track of that kind of regime and
may well have overdosed on
Phenergan® or a combination of the other medicines. Dr. Stroub is taking her off all three, and will keep her one more day for observation. If she is normal by tomorrow, she'll go home, but can no longer take those medicines.
|April 24, Mon.
Hospital, day 2 Neila was stronger today, but improvement in her disorientation was marginal at best. Given the apparent neurological issues, she will not be discharged today. I missed Dr. McIntyre, but read the MRI report that it showed no new brain metastasis. She continues not to understand the presence of the catheter, and has to be physically restrained.
|Presbyterian Hospital They did the MRI at
11:00 am, though we probably won't know the results until tomorrow when the
doctor makes her rounds. They started her on
Decadron®--one of the steroids she hated so much when she had brain radiation--and was noticeably better; she could stand up and form coherent sentences, albeit only very short ones. But her mental functions still haven't returned to the limited normality we've come to expect lately. She has a catheter for urine collection, but has been holding back most of the day because she doesn't believe it: she thinks she will wet the bet. I've explained several times, and had the nurse in to explain, but she doesn't believe us. Later this afternoon she began having trouble speaking again: you can tell she knows what she wants to say, but can't make her mouth form the words.
|April 21-22, Fri-Sat.
ER: Thursday night Neila had to wake me to get her to the bathroom--she was unable even to sit up in bed to change clothes and could barely speak a coherent sentence. Friday afternoon she fell in the hall, and Raquel had to call Rony to stay with her until I got home from work. By Saturday she had become completely incoherent, or at least it was impossible to understand anything she said, and could not feed herself--I had to spoon food for her. I tried liquids with a straw and that worked better. When Saturday brought no improvement and she was not recognizing us I called the doctor (Dr. McIntyre, on call for Dr. Perkins' patients this weekend) who recommended we take her to the Emergency Room. Initially, they did a CT scan but the ER attending physician said it showed nothing remarkable and that her blood work was normal. She was transferred to the hospital and they will do an MRI tomorrow.
|April 18, Tues.
||Office visit, Lab work, Chemotherapy
Neila's counts were normal except an "8" hemoglobin reading for which
Dr. Perkins prescribed an iron supplement, NIfeREX-150. Dr. Perkins did not think we should be too
concerned at this point about the spot on her liver: it is too small, and
without a biopsy we don't really know what it is anyway. It's better to
concentrate on the tumor in her lung. He also prescribed Kyatril for
We went ahead with the chemo today, should repeat it a week from today, then wait two weeks and do another scan to see if there has been any effect on the cancer.
|Lab work: This was just a follow-up from the platelet transfusion and Neupogen injections from last week. All her counts had returned to the normal range, and platelets were 191,000.
|April 10, Tues.
||Email from Dr. Guilherme Bezerra de Castro, surgeon-oncologist and Neila's cousin in Brazil. He read the CT scan reports and felt the spot on her liver is too small to be significant. The area of concern is the growth of the tumor in her lung, but she has responded well to chemotherapy in the past.
|Lab work: We went in at 11:00 am and finished in a few minutes, but as soon as we got home the nurse called to say Neila's platelet count was "critically low" at 8,000. We had to go to the Oncology Outpatient ward of Presbyterian for a platelet transfusion. Took all afternoon.
|Mail order pharmacy delivered
Neupogen® at 10:00am. The company is called ChroniMed, out of Minneapolis, phone: 1-(800)-801-8886. I set up an appointment with Jan Day to administer today's injeciton with her help. The billed cost of one week of Neupogen was $1,111.26, of which 10%, or $111.13, is--according to ChroniMed--our responsibility. At 2:00 we went back to office and Jan showed me how to give the injection. It doesn't seem particularly complicated.
|April 3, Tues.
||Lab work. It is one week from last chemo session and we went at 9:45am for in for lab work. At 11:30 Dr. Perkin's nurse, Jan Day, called that she had 0.2 white blood cell count, 20,000 platelets, and and ANC of 100. Based on that result we went back at 3:00pm for the first of seven daily 300 microgram injections of Neupogen® to increase her white blood cell count. They are to teach me how to give the subcutaneous injections. When we got there, there was a problem with the insurance, so they gave her one injection, but they didn't give us any to take home. Later, the pharmacy called that Prudential will only supply through a mail-order pharmacy. She ordered enough and they are to deliver it tomorrow.
||Infusion. 1980 mg of
|March 21, Tues.
||Infusion. 1980 mg of
Gemzar® and 450 mg of carboplatin. Next week she will take just the 1980 mg of Gemzar®, and that two-week sequence constitutes a cycle. A cycle then repeats monthly. She also started a daily dose of Comoudin®
1 mg to prevent her blood from clotting. Side effects to look for include
low blood counts, loss of hair (though probably not as severe as with
Taxol®), and nausea.
|March 15, Thus.
surgery at Presbyterian to implant
Hickman with a Dr. McCullum. Hospital kept her under observation until 3:00pm and released her.
Visit with Dr. Perkins for results of the February 23rd CT scans
of the chest and abdomen. In summary, the tumor in her
lower right lung has tripled in size since the December scan, and there are
additional nodules. In addition there is the possibility of metastasis to
the liver. Dr. Perkins did not recommend additional chemotherapy since she is
not symptomatic, but Neila was inconsolable and wanted to start anyway.
This is a very a difficult decision. Logic asks why do something that
will surely harm you if its benefits are problematical. But the heart
says you will surely die if you don't, so it's worth the risk. But logic
reminds you that this is the Big C and it's going to kill you anyway.
What you should try to do is maintain the best quality of life you can
and that means avoiding chemo as long as possible. Save it for a last
resort. But Neila feels worse not doing anything: better to be doing
something to fight it.
| February 23, Wed.
||Imaging: CT scans of the chest and abdomen at
PhyMed. Premedication for iodine allergy was
Prednisone® and Benadryl®
twice a day for three days, then
Zantac® on the day of the scan.
Visit with Dr. Perkins. Nothing unusual, ordered routine CT scans of chest and abdomen for next visit.
|January 11, Tues. a.m.
Visit with Dr. Perkins.
|January 11, Tues., p.m.
Visit with Dr. Winslow, ophthalmologist. This was a follow-up to a series of laser treatments did for her eye. High blood pressure had caused capillaries in her retinas to burst and hemorrhaging blurred her vision. The laser treatments were to block of the capillaries so they wouldn't hemorrhage. Her vision has improved thought not returned to normal, but Dr. Winslow said there was nothing else to do.