Andre: MTX 8

MTX 8 went even better than MTX 7, so we are definitely on the right path here. We dropped off Mira at the San Diego Music studio in San Marcos at 9AM on Monday 8/15 for day camp. Mira was going to spend the nights at Ranjeeta's and we wanted to give Ranjeeta enough time to finish her summer school grading so we signed Mira up for 4 days of camp. How well our summer has been going and how much help we have been getting can also be measured by the fact that this is the first camp we sent her to all summer. She enjoyed it quite a bit, because they do a lot of arts and crafts there. She went there last summer as well and they still remembered her. We felt good about sending her there since the teachers there are really nice. Marcia took Mira to soccer practice on Monday and Wednesday night, and on Tuesday Mira had a sleep over with Helena to practice their Diwali dance "Busted!" Mira had a great time until I picked her up again from camp on Thursday.

The round started well for us apart from an episode on Sunday night when Radhika ate something that didn't agree with her. In general Radhika has a good appetite and eats quite well between rounds. She still has a hard time with spices sometimes, especially garlic, but fortunately we have a good mashed potato and rice with yoghurt routine down for during the rounds, so that we didn't have any mishaps during the actual round, even though the usual nausea was never far from the surface.

After dropping off Mira we left the house on Monday morning in a bit of disarray. Radhika and Mira had spent a lot of time the few days prior to that sorting through Mira's stuff and getting her room ready for the start of school tomorrow, Wednesday 8/24. Her room looks really great now, but the rest of the house is not quite there yet. However it is getting there, and it has to because we want to get the inside painted by Bill Hood in September, and there is still some purging and rearranging to be done before that. We are doing a lot of work on the house right now. It is great, because for one the house really needs it, and we have the time and energy to actually do it as well. But for another it keeps Radhika's mind occupied away from the chemo and gives her something to look forward to between rounds. For me the make over of the house is a metaphor for the chemo: at the end of the rounds (around December) I will have a house AND a wife with a fresh outlook on life.

But I am digressing a lot today, so back to MTX 8. Our first stop on Monday was the Panera on San Marcos Boulevard where Radhika picked up some bagels for the next 3 days while I filled gas. The travels go smoother with burgers in our stomach, so we went straight to In-N-Out in San Marcos, where we even bumped into the Abreu's ... we are very lucky to know so many nice people. The journey to LA was smooth, we dropped our stuff off at the apartment and got to Cedars on time at 2:30. Radhika had one of her favorite nurses, and that made for a good start into the round: Wes asked Radhika what she would take to a picnic, because he was having one the next day with his fiancee. That was a nice distraction for Radhika and me. Wes is very organized and had everything ready and waiting for us, so that the usual routine of drawing blood and getting settled in went quite fast. Radhika also loves his dressing changes, so that she decided to have that already done by him on Monday instead of waiting for Wednesday when it would have been due. While we waited for the lab results Dr. Forscher stopped by to see how Radhika was doing, and he was again quite upbeat about her progress and said that we'd schedule her next scan for some time after IFEX next month. We talked about the Chargers and life in general, but he also said that Radhika's intermittent coughing did not necessarily have to be the cancer, because MTX dries out your system. That made sense to Radhika, because she says that the cough now does feel different from what it was a few months ago. So in addition to flushing out the chemo, this serves as another encouragement for Radhika to stay hydrated in any way she can: drinking, our IV pump, colonic, and the humidifier in our bedroom all help with that.

We asked Wes to help us set up a plan on how Radhika can take the 6 premeds most efficiently. Some nurses have the tendency to give these one after the other, which would take 3 1/2 hours, even though some of them are compatible with each other and can be given simultaneously. He called the pharmacy and it turns out that Zantac and Sodium Bicarb can run together in the first hour, then Benedryl/Reglan/Composin for 30 minutes followed by 30 minutes of Decadron, so that it is all over in 2 hours. Wes is a great nurse, but we really can't complain, since the nurses at Cedars are all quite good in their own ways. At any rate, by 5:30 the Benedryl/Reglan had put Radhika to sleep, so that she again missed the 4 hours of MTX. When it was time to go home at 10PM she said she wanted to walk to the car, but I could tell that she was too sleepy, so we got a wheelchair instead. Getting up the stairs at the apartment was easier than last time, since it wasn't as late.

The night went by without a glitch and since she got the Benedryl/Reglan earlier, it also wore off a little earlier and by 9AM Tuesday she was already up and about. We went to Cedars for her labs at 11AM and after that had a walk in Beverly center (Radhika is looking for a protective cover for her iPad that can also make it stand upright, but she didn't see anything she liked.) We went back home for lunch, a nap, watching some Great Queen, and an early evening walk, so that the day went by really quickly.

On Wednesday we came to Cedars at 11:30 as Susan had asked us to, but then in the end we had to wait since the nurse was busy and the order for the labs was not in the computer yet. After having her labs drawn Radhika went to the cancer support group lunch meeting Susan organizes at Cedars every 3rd Wednesday of the month. I went back to the apartment, had lunch and packed the car. When Radhika called to say that the meeting was over I was ready to come and pick her up, while she went to the Infusion center to get herself some more of the shower protection gloves for her IV line. The drive back home was uneventful, except that Susan called to say that Radhika cleared the round nicely.

The rest of Wednesday and Thursday we took it easy, with Radhika relaxing on our patio. By Friday Radhika was basically back to normal, which is by far the fastest this had ever gone. She went for accupuncture on Friday and I went for a massage with Anke. Our backs had been very sore for over a week so on Sunday we both got a massage from Ruth, which did help both of us. I think I will go for a massage every other week now as long as we are going through all this tension. On Saturday I took Mira to Gymnastics and then she had her first soccer game, and so the weekend went by. The team Mira was playing had some more advanced players (they don't keep score, but the score must have been 0:10), and Mira conceded 5 goals while she was goalie in the first quarter, but she still had fun. Thanks to seamstress Marcia Mira's purple jersey actually fit, and the girls all looked very cute.

Looking forward, Mira starts 2nd grade tomorrow, and Fall semester classes at CSUSM start without us on Monday, so things will go back to some sort of new normal again. The next round of MTX will also start on Monday 8/29, the week after that Radhika and I will go to a Thich Nhat Hanh retreat in Deer Park monastery in Escondido. The long IFEX week will probably start Monday 9/12 and while we are gone that week the house will be painted inside. After that week we should have 2-3 weeks off before the next round of MTX, and hopefully Radhika's parents can visit us from India around the time of her birthday on October 17th.

Andre: MTX 7

Dear friends,

it is now half time on Radhika's chemo schedule, and we are grateful that unlike teenagers with primary Osteosarcoma she will not have to go through surgery at this stage, since we already dealt with that in 2006.

MTX 7 went much better than MTX 6. It started with Radhikas decision that 8 days between rounds is too little for her and we postponed MTX 7 to Monday August 1. That extra rest made her body and mind that much more ready for the next round. She used the time for accupuncture/foot detox/hydrotherapy to help her body mend, and on the day we were originally supposed to go for chemo we received an outdoor sectional couch from Costco instead. We spent time reorganizing the patio, and the result is awesome. It is like our house gained an extra room California style, that is outside. On warm days it is actually more pleasant to sit on the patio than in the house upstairs, since our patio almost always has a gentle breeze going.

We also made some small changes to the routine from MTX 6 that contributed to a better experience:

• Radhika had her Sancuso nausea patch already the day before the treatement, as recommended, but we simply forgot that the time before.
• We had lunch before leaving for LA, unlike last time when we cooked at the apartment.
• The Wendy's burger and baked potato sat much more solidly in her stomach than the rice with kale, which came right up last time at Cedars.
• We had an earlier start with a peaceful drive up to our apartment and dropped off our stuff before heading to Cedars where we arrived around 2:30PM. Eating out instead of cooking and cleaning made things go more smoothly.
• Susan had advised Radhika that Ativan works well for anticipatory nausea, so Radhika took it on the way from the apartment to Cedars and fortunately had hardly any nausea this time.
• Radhika started off on Benedryl+Reglan as the first drugs in the nausea regimen, so she slept through most of the time at Cedars. The fact that she had this combo before the MTX rather than after also meant that it was easier than last time for me to get her up the stairs in the apartment at night, even though it still felt like sleep walking.
• We hydrated her even more through her IV pump than the time before: 2000ml on Tuesday and Wednesday, and 1000ml on Thursday to flush out the MTX. Having the IV hydration really takes the pressure off having to drink so much, and we are thankful to our insurance that this is actually covered.
• I set my alarm for ALL doses of the Leucovorin rescue drug (6AM, noon, 6PM, midnight) and not just for the two night doses, since taking the day doses right on time is just as challenging to me as the night doses. That matters since according to Dr. Forscher going through MTX without Leucovorin would be like jumping out of a plane without a parachute.

The fact that MTX 6 was already not as bad as some prior rounds of MTX also meant we weren't as stressed about MTX 7, and we hope that this will carry onto future rounds even more strongly. Feeling less stressed, better prepared and more organized really helped make this go by faster. The only annoying thing was that in spite of the better start we did not get back to the apartment before 1:30AM, even later than last time. One problem was that it was a very busy day at Cedars, so the lab took at least an hour longer than last time. This didn't bother us much, since we were watching the Great Queen (we are now at episode 32) and Radhika had no nausea or acidity. The only problem with watching was that I didn't notice that the bicarb which kicks off each round was running glacially slowly through her IV pump. By the time we finally figured out that the pump was defective we had wasted a good hour or two. The rest of the round went fine, but it is amazing how these things can hold you up. I will pay more attention to the IV pump next time, and I will also make sure that compatible drugs are given concurrently rather than consecutively since not all nurses pay enough attention to these things. Fortunately, since I was more relaxed, getting home past midnight wasn't that big of a deal.

The next morning, Tuesday, Radhika slept like a log and I finally woke her up at 11AM for breakfast. Of course I had to give her the bicarb (which she had to take with yucky Vanilla pudding, because they were out of chocolate) and Allopurinol at 6AM, but she didn't even open her eyes for that. I used the morning to chop water melon, so that I could make her fresh water melon juice throughout the next two days. Together with the Boost plus this really helped to make her feel less nauseous, and it is more pleasant than drinking only water. When we got to Cedars for the 2PM blood work Radhika was actually in pretty good shape: we chatted with Susan who was also quite happy with her blood values and how well this round was going, and we started hydrating. We went straight back to the apartment where Radhika went to sleep for another 3 hours. After that we started the Leucovorin routine, had dinner, watched a bit, went for a small walk near the apartment and both had an early bed time.

Wednesday was a good day overall: we made it on time for the blood test at 11AM and Susan said that we should be able to go home early, so that we went back to the apartment for lunch and packed up. We got Susan's call that we were cleared to go on the way home: her values weren't quite perfect, so we had to continue the Leucovorin and hydration for another day, but that was no obstacle. We got home by 3PM on Wednesday, which is the fastest we ever made it despite two horrible accidents on the 405 a mere 5 miles apart (one involving a motor cycle, and the other an over turned car on the shoulder). Normally when we get back Radhika just goes to bed to sleep for some 12+ hours, but this time she went straight to the patio and enjoyed herself looking at the garden and resting. When she drifted off I went to Sprouts to buy some groceries and to UPS to pick up the iPad her PhD advisor had sent her. Doug West is really the best mentor and advisor anyone could hope for, and Radhika is having a lot of fun with the iPad, just as he said she would.

On Thursday she felt down and out because the chemo took its toll again, and Mira brought all her excitement and energy home that morning. She had a great time with Kim, Penelope and Helena, and they are already scheming what dance to perform at the next Diwali party. With all her energy it was good that Mira had a playdate with her friend Emily on Thursday afternoon, so that Radhika could get some rest, and that Ranjeeta brought some dinner and calming energy on Thursday evening.

On Friday Mira had another playdate with Emily while I went for a massage and Radhika went for accupuncture in Encinitas. In the afternoon Mira's counselor Kathlyne came for a visit. Friday and Saturday would have been great except that Radhika had some chest pain and still felt down, jucky and plugged up. However being able to spend time with our friends and next door neighbors Joe and Julie, was really nice and Radhika is feeling a lot better today. It seems like the bad feelings have passed again and we are looking forward to a great week at home before we go for MTX 8 on Monday 8/15. It is great when the biggest problem you have is that they seem to have reformulated the Boost plus! The taste makes Radhika nauseous now, but we hope that we will find an adequate replacement for that this week.