Friday, September 2, 2011

Andre: MTX 9

The week leading up to MTX 9 went very well, despite the fact that it was quite hot most of the week, and that the labs on Tuesday 8/23 test showed that Radhika’s white blood cell count was on the low side. Radhika and I got acupuncture on Friday 8/26, and we felt physically fine, if a bit sluggish, all week. On the bright side Radhika’s weight is now actually slightly higher than what it was when she started the first round of chemo. That is a pretty big deal, since Susan keeps reminding her to eat and keep her fighting weight up, and the acupuncturist also says that there is a high correlation between the successful treatment of cancer and keeping a good weight. This is all in no small part because of the food so many of you keep delivering and for Marcia and Ranjeeta for keeping it all together.

Wednesday 8/23 was Mira’s first day of 2nd grade, and even though the days leading up to it she was a bit edgy, spending too much time online probably didn’t help with that, the day itself went well. We are all happy that her friend Cassidy is one of her classmates. They are also in the Kids-on-campus after school program together, so when I went to pick her up that first day, she didn’t even want to come home. On Saturday 8/26 Mira finished learning all the skills in her level 2 gymnastics, so she will advance to level 3 if she passes the test next Wednesday. On the same day was also Mira’s second soccer game. They all played much better, and the other team was physically smaller than Mira’s team, let alone the team they played the week before, so they must have won something like 8-0. Mira didn’t have to play in goal, but was offense for most of the game. She was much more focused on the game, scored 2 goals and was involved in 1 or 2 more. That afternoon we met Alyssa Sepinwall and her son Jacob in Carlsbad and we all went swimming, except Radhika who didn’t want to take any risk of infection because of her white count. Mira slept well that night and on Sunday we mostly did things around the house.

Monday 8/29 started off well: Mira got to school on time, and Radhika and I energetically got ready to go to Cedars. Since for this round Mira would stay at our house with Teresa Shallow, who used to work in the faculty center with Radhika, we wanted to make sure that the house was actually in good shape and that they would be able to find everything they would need. By 11AM Radhika and I were both a bit spent, so we went for an early burger lunch at Five Guys, picked up some bagels and fruits from Sprouts and went back home to finish packing. We left for LA just after noon, but my brain was not working well that day, because as soon as we got to the apartment in LA I realized that I left the keys in San Marcos. So we went straight to Cedars, and I spent the next couple of hours fretting and calling people (thanks Judy, Sonia and Leticia) until I could get a hold of our landlord who, despite having had a busy day himself, dropped off the spare keys at the apartment where I picked them up there by 7:30PM. Thank you Joe!

While I was worrying about all that, Radhika was my rock, which is funny since she was the one getting the MTX, and the nurse we had this time wasn’t our favorite either. One thing in the nurses defense though is that she figured out that Decadron and Sodium Bicarb are compatible, so that now Radhika can take her 6 IV premeds in just 90 minutes, instead of the 3.5 hours it would take if they were run one after the other, shaving off another 30 minutes from the premedication routine. By 6:30 PM Radhika was asleep, and she slept through the MTX (6:45-10:45PM) all the way until 11AM the next morning. The main complication we had after that was that at 8AM on Tuesday I realized that while I had gotten Radhika’s IV fluids and supplies (thanks to the CORAM people who called me yet again on the Friday to make sure I had what I needed, or I would have forgotten!) I had left the actual pump back in San Marcos! This forgetfulness is really bothering, since by now I ought to be more together about these things. Radhika thinks that I am so scatter brained because I also have been working on putting together my application for promotion for full professor, which is due on September 6. I hope she is right, because forgetting the keys and the pump in the same round was not good!

The problem with forgetting the pump is that it meant that Radhika had to drink 3800ml from the time we saw Susan at 2PM on Tuesday until 2PM on Wednesday, whereas normally 2000 of that would be IV for her. So that meant that she had to drink about 12 tall glasses of water/tea/juice over the period of 24 hours. Given that she typically sleeps more than 8 hours per day this is almost 1 glass per hour. Treigh had to do this for each round of MTX, and found it difficult at times, but I hope that for Radhika this will stay the exception. Fortunately Radhika got through it OK, and by bedtime she already drank 3000ml and by the time we went to see Susan at 11 the next day she already had exceeded 4000 ml: some tea and some fresh watermelon juice, but largely a mixture of 2/3 water and 1/3 lemonade. This regimen also affected her eating, since normally she prefers lighter food, such as the rice+yoghurt or mashed potato we had brought along, but with all the water sloshing around in her she wanted something more solid. Since we weren’t quite prepared for that, we ended up walking to the Subways that is on the other side of the street from us and sharing a chicken sandwich on Tuesday night.

The night went fine, with only a bit of nausea (in fact she needed only 1 Ativan the whole time we were in LA,) and we spent Wednesday morning packing, so that we could leave right from Cedars after having her blood drawn. When we got there at 11:15 or so Susan wasn’t there, since she must have been dealing with a complicated case. So we ended up chatting with some of the other cancer patients that were also in the outpatient room: another Sarcoma patient of Dr. Forscher who moved back to LA from Vancouver since she couldn’t get the same level of expertise there, as well as a woman from Lake San Marcos who told us she has what Steve Jobs has … it’s a small world. Most of the patients are surprisingly upbeat, but being upbeat and feeling well taken care of does help when you are being treated for cancer. Just after noon we finally got going back home, but we stopped at a Rubio’s in Mission Viejo because we both felt hungry. While we were there Susan called us to tell us that Radhika’s labs were fine and that she should just continue taking Leucovorin until noon on Thursday. By 2:30 on Wednesday we were home again, and we started Radhika on a 2000ml bag of IV hydration right away. We had arranged for Mira to be picked up by Sophia’s mom Rose to go to soccer practice and that gave us a breather until 7PM. We needed that because Radhika was exhausted, and I always like to take my time unpacking, going through the mail and phone messages, and starting the laundry. Mira was in good spirits, and apart from the fact that she couldn’t find her soccer ball anymore after practice and that she had forgotten her water bottle at school she had a great time while we were gone. Thanks to Teresa for taking care of her, and to Sonia for bringing her to school on Wednesday morning.

Thursday was a slow day, I finished my chores and started working on my promotion file again, but unfortunately Radhika was not feeling very good all day despite getting another 2000ml bag of hydration. She took it very easy all day, primarily watching Eddie Izzard on you tube, and trying to get through the day. I was home with her except that I went to “back to school night” at Mira’s school and did a quick run to Rubio’s for her dinner while Mira was playing with Jacquelina next door. So while I’d say that Monday through Wednesday went better than last time, the Thursday was actually worse.

We will see what the next few days will bring, but for me they will primarily bring working on my promotion file. Our other main task leading up to the next round, Ifosfamide (IFEX), is to declutter the house a bit, so that it can be painted from the inside. Radhika happily picked the paints for inside the house the week before MTX 9: yellow and a contrasting pale rusty red for downstairs, and then orange for the master bath, and green for the other two bathrooms. The painting will be done during IFEX, which is scheduled from September 12 through 20th. IFEX happens to be the only remaining really long round of chemo, so the timing couldn’t be better. It will be nice to come back to a freshly painted house, and this gives Radhika something to look forward to since she is not particularly looking forward to IFEX. Radhika has basically no memory how IFEX 1 went in early April, because she was so far gone during that round, and that worries her. We have talked to Dr. Forscher and Susan on several occasions about it and they keep saying that this round won’t be as bad as IFEX 1, since Radhika has so drastically improved in every aspect. Forscher is not the person to say that something will be going better if he doesn’t firmly believe it, but Radhika is still pretty scared. However, Radhika does try to be upbeat: I gleaned from Treigh’s blog that she only had 2 rounds of IFEX, so when Radhika asked Dr. Forscher if there was going to be another round of IFEX after this one, he said “Not unless you want another one” at which stage we all had to laugh. I do have high hopes for IFEX 2, even though there can always be problems, because in spite of all the difficulties IFEX 1 was a major turning point for Radhika. Furthermore Radhika’s parents have told her that the Jeer at their temple in India has said “The treatment in September will go well and she will see good results” without even knowing that we have IFEX 2 as well as the 6 month scan of her body scheduled for September.

From Tuesday September 6 evening, through Sunday the 11th Radhika and I are also scheduled to participate in a mindfulness workshop by Thich Nhat Hanh in his monastery in Escondido. For me the timing is quite good, with my application for promotion due earlier that day, a bit of mindfulness after working to put the file together will be nice, and for Radhika it will be good too since it will hopefully help her be in a better frame of mind for IFEX!

1 comment:

  1. Andre, Radhi,
    Thanks for all the updates. Its all extremely encouraging news & we are so very happy to hear it. I have done a couple of mindfulness workshops at a Tibetan Buddhist institute up in Berkeley, I think you will very much enjoy and benefit from it. Wish you the best of luck and smooth sailing with your promotion.
    Love
    Latha & Anurag

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