Andre: Day 4 of IFEX

Dear friends, it is 6:30 AM on Friday. Since this round is so long I decided to write a blog entry at the midway point, and I will post it when I get to Cedars at around 2PM. Long story short, so far it is going as well as could be hoped for, and certainly much better than the other time she had IFEX. But I guess you could tell that already from the entry Radhika wrote on Tuesday and posted on Wednesday.

The week before we went to Cedars was good, but very busy. I got my promotion application turned in on Tuesday 9/6, and I have since heard that the file has been deemed “complete” and now all that remains to be done is to wait for it to be reviewed by the Department committee, the Dean, a University wide faculty committee and then our Provost will make the final decision by the middle of June. Radhika has been a great support in this, because she took care of Mira in the days leading up to the proposal, especially on the weekend, on Monday (which was a school holiday, and Mira had a fever), and Tuesday (Mira had to stay home since she hadn’t fully recovered yet.) On Wednesday Mira went back to school, but Radhika and I were kind of spent, so we decided to stay home and not do much.

On Thursday Radhika and I went to the mindfulness retreat, so that we could both wind down a bit from the prior days and to help us prepare for the upcoming IFEX. Deer Park monastery in Escondido is a very peaceful place, and it had great energy. There were several hundred people there to listen to Thich Nhat Hanh’s Dharma lectures about Buddhism and mindfulness; to participate in group discussions (which we skipped since we didn’t feel fully comfortable with it given our state); to have a silent communal lunch; and to have an after lunch meditation session. There were also early morning activities starting at 5:30AM, but we never got there before the Dharma talk at 10:30AM, and evening activities, but we missed those as well. On Thursday we drove home at 3:30, and during the 30 minute commute back home the power went out in all of San Diego county due to human error and a problem originating in a power substation in Arizona. So when we came home it was quite peaceful, and we avoided most of the traffic mess that ensued other than they were sending everyone home at Palomar College. We figured that Mira would still be safe at KOC, and I only went there at 5 to pick her up. We had a candle, torch and moonlight dinner that evening on our patio, and we moved the rest of our freezer food to the ice box. We had given our neighbors Joe and Julie some of our food we didn’t want to spoil, and in return we got some extra Tiramisu cake from West Gin bakery they had bought. It would have been nice to have dinner with them, but we didn’t want Mira to give any remnant germs to their baby Junalisa and their 3 year old Jacquelina. Like so many people we all went to bed early that night, it was “lights out” by 8:30 for all 3 of us.

When I woke up Friday morning I found that the power was on (it must have come back for us around 1AM), but that due to the uncertain power situation all schools and colleges in San Diego county had already been cancelled before midnight. So we decided to take Mira with us to Deer park, and overall that turned out to be a good decision. I think for a 7 year old, Mira can be quite mindful, and she clearly enjoyed the peaceful atmosphere and the delicious food. Still it was a bit of a challenge since we were all a bit anxious about being gone for the whole upcoming week. After that we went to Encinitas so that we could all enjoy an ice cream and then Radhika and I got some acupuncture from Christine to relieve the tension.

On Saturday we had decided that Radhika could spend the Day at Deer Park, which she enjoyed, while I spent the day with Mira. To complicate things we had the contractor, Lee Masters, come to our house that day to work on the light fixture in the kitchen, since we wanted to replace it with something nicer before Bill Hood would come to paint the house on Monday. So Mira and I went to gymnastics at 10, the library right after, than lunch at home a noon (which was a bit of a challenge since the kitchen was tented), followed by the soccer game at 12:30. It was a fairly evenly matched game, that Mira’s team barely won 1:0 even though they were attacking most of the time. (On a funny side note: The week before our Saturday was similarly crazy, because Radhika had an appointment with Dona in Encinitas, so Mira and I were also running around until it got time for soccer and I realized it was the one Saturday without a game!) When we got back home from soccer, Mira watched her library DVD and I took care of a couple more things, such as the recycling and some cleaning up, until Radhika came home. After Lee left we went to the Elephant Bar because Mira’s sticker chore chart was full and that’s where she wanted to go.

On Sunday, I went to Deer Park and Radhika spent the day at home with Mira. There was still a lot of prep work to be done for the painting, and after I came home around 2PM we all worked together nicely until we went to Ranjeeta’s at 6 for dinner and to drop off Mira for the week. Radhika and I did more prep work that evening, until we fell into bed fairly exhausted. On Monday morning it was more activity, since Bill already came at 7:15AM to start the painting. Overall I must say that part all worked out well, because between the monastery and the upcoming painting we were so busy (in a good way) that we didn’t have as much time to think about IFEX as we could have had.

At 10:30 on Monday 9/12 we left for Cedars. I wish I could say that the drive was uneventful, but unfortunately I got my first ticket ever for anything other than parking: speeding in the car pool lane at 75 mph in Orange County, trying to make up time after we stopped for lunch at a Whole Foods. I guess that is the price to pay for getting treatment in LA and with all the driving back and forth it was inevitable, I just hope the insurance won’t go up too much. At least the rest of the day went well: I dropped Radhika off at Cedars, went to set up the apartment for the night (stocking the fridge and the pantry, making the bed, putting out the towels, …), and found Radhika in decent spirits when I got back. Since we got there a little late, and we always have to wait for the blood tests before they can start the treatment it took us until 8 or 9PM before we got to the apartment. Not real late, considering that for MTX it is often around midnight. Nevertheless we just had time to eat before we went to bed.

On Tuesday our appointment was at 1:30, and Radhika was already up at 7AM, so we spent a nice leisurely morning together and we got to Cedars on time. Forscher stopped by Radhika’s room every day, which is a good, because given how bad the previous round went I think he wants to be prepared if the other shoe drops. I am not sure if he is expecting the shoe to drop, but better safe than sorry. That day we also chatted with him about the prospect of the Chargers moving to LA and what that would do to ticket prices, given what you have to pay for Lakers tickets and that it is the same group of people building the stadium. Forscher thinks that that organization will want a team in LA that is ready to compete right away, and so the Chargers would be desirable for them. We went straight from Cedars to the apartment and got there at 6PM. Kent and Leticia, were already there for dinner that evening. She had made a Shrimp cocktail appetizer, and Beef Stroganoff with noodles and a great salad with some bread and butter on the side, and a dessert. The evening went very rapidly, and after they left we took a walk in the fresh air before going to bed.

On Wednesday we were late for our 2PM appointment since Radhika slept until 10AM and we went to explore “The Grove” a neat shopping and entertainment mall near CBS studios on Fairfax. We had a good time there and lost track of time, before we rushed off to Whole Foods for Lunch. The time at Cedars was again uneventful, with Radhika reading and my playing an online game. When we got home we went for a walk and talked to Ranjeeta on the phone. Unfortunately after we got home she had her first episode of vomiting this round: probably some of the food she had at Whole Foods didn’t quite agree with her, and the cumulative effect from the chemo started taking its toll as well. The night went well, since we have been very careful with what she had been eating, primarily rice with yoghurt.

Despite the increasing nausea and her frequently complaining about stomach cramps, Thursday went fairly OK too. Radhika slept from 10PM until I woke her up at 10AM that morning. We went to the post office before going to Cedars at 1:30, and we spent most of our time at Cedars by watching 2 more episodes of the Great Queen (we are now at Episode 40.) After we got back we just had a quick walk, some rice and curds for dinner for her and left over from Tuesdays feast for me, and at Radhika’s request we both went to bed already by 9PM.

UPDATE 5:30 PM, FRIDAY: I wrote most of this blog before Radhika woke up at 10AM this morning, and had meant to post it when we got here at 2PM, but things have been happening today. I could tell the cumulative effect of 4 days of IFEX on Radhika right as she got up. She threw up 3 times this morning: her midnight Boost upon waking up, then her morning tea biscuit (which she had while we watched the Queen) before her shower and some melon after the shower. At noon I convinced her to take an Ativan, her first nausea pill so far this round. It put her right to sleep, something Ativan had never done for her before. That surprised me since the other option, Benedryl+Reglan, does exactly that to her, which is why I avoided it in the first place. I woke her up at 1:30PM for the appointment at Cedars, so she said her prayers, got dressed and off we went. As soon as we got here she went straight back to sleep and hasn’t woken up for more than a minute or so when somebody asks her something. I could tell she was kind of dazed and confused even before the Ativan, and when I described the symptoms to Forscher at 2:30 PM he immediately decided to shorten the round by skipping the last 2 days (Sunday and Monday.) He said that last time he started her at a higher level and had to drop her to a much lower level to get to the minimum 10 (I think it was grams per meter squared), and that this time he started at a medium level and that as long as she continues at that until 1:30PM on Saturday she will have reached that level and actually have gotten more than last time. He said that at that point the added benefit in fighting the cancer from the extra two days of IFEX is not worth the neurotoxicity it would cause. Thank god for doctors who look at their patients and don’t just follow some regimen.

Radhika went into this round in really good shape, and as gruesome as this last paragraph may have read, it is going MUCH better than the last IFEX. Obviously she is not eating or drinking much right now, but at least pain, constipation and stomach acidity are not a problem. I think she will make it out OK as well, and unlike last time there should be no overnight stays at Cedars with a concerned Dr. Natale jumping into action.

The plan now is that she will be off of the IFEX by 1:30PM tomorrow, since the 20 hour infusion just got started. Then she will get 4 hours of IV hydration with Mesna (the drug that protects the kidneys), and we should be able to leave by 6PM putting us into our own house by 8PM Saturday. For that to happen I will be pretty busy tomorrow morning packing up the apartment, so that we don’t have to go back there from Cedars. Bill said that he’d finish the painting of the house by noon, and with the VOC free paint we should be able to be in the house without noticing anything; he had planned to be done a day earlier, but he had problems with the paint and he had to put about 6 coats of it down, something he said he had never experienced before with a Benjamin Moore paint. If that doesn’t work out and Radhika can still smell it, then we will just stay Saturday night at Ranjeeta’s house. On Monday we are scheduled to get the Neulasta white blood cell boosting shot at the SD cancer center in Vista at 11:30 and then the true recovery from the round can begin.

I will write another update some time after this round is over. Please keep her in your prayers, so that the time until Monday will pass as quickly as possible, she will remain in reasonably good shape emotionally and physically, and that the IFEX takes a big bite out of her cancer.