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Sunday, September 18, 2011

IFEX is over

Dear friends,

IFEX is over! It's really over! And two days earlier than expected. As you might have gathered from Andre's last post, things didn't continue as perfectly as the first two days. The nausea slowly started creeping back, together with fatigue. I'm so glad that Leticia and Kent got to see me while I was still ok (and I actually got to eat the delicious dinner she made). But it was still not as bad as the last time, so I was really surprised on Friday when we went in to Cedars for the usual round of hydration, and I woke up to find that Forscher had decided that Friday night would be my last night of IFEX! I smiled at him very prettily and thanked him, without truly believing he meant it. But he did! Apparently, Andre told him that I threw up 3 times between 10 and 1, and he decided that I didn't need to suffer any more. When Andre told me that today, I couldn't help shaking my head -- I hadn't even realized that I was suffering.

It is over, though, and now comes the slow slog to recovery, to feeling like myself again. I spent the last two days moping and feeling just sick. My emotions are all over the place and though I haven't shown any tendencies towards knife carving (as Alyssa so delicately put it:), I did deplore to Andre my lack of homicidal friends.

I have such wonderful friends. We came back on Saturday night to a gorgeously painted house, thanks to Bill Hood. Bill is an amazing painter -- lucky Toni! Our house looks like a new place. I love the entry way which is a beautiful rust red, but it took me a minute to adjust to the rest of the house, which is YELLOW. In all fairness, Bill did warn me that it would be yellow, and so did Ranjeeta, from whose house I drew inspiration, but the yellowness of it still took me back. The house still had a faint smell of paint, enough to make me queasy, so we got back in the car and drove to Ranjeeta's house for the night. Mira wasn't there since she was spending the night with Kim, Helena, and Penelope, which Andre thought was a good thing because he didn't think I was in any shape to handle Mira's energy. She came back the next day after a wonderful time with Helena and Penelope and exclaimed with delight over the green-ness of her bathroom. She walked in and completely ignored me to run upstairs and look at the bathroom. It's funny because one of my worst memories of the last round of IFEX was coming back home, nauseous, sick, and bleary, and just walking by her to get to the bed. For weeks now, I've tortured myself, good-mother-guilt style, imagining how she was waiting for me all week and how I just ignored her. I think I'll let go of this now.

Andre was right -- painting the house is really helping me recover. Yesterday, as I sat mourning to him, telling him the pointlessness of it all, he pointed out that we need new curtains and they will help soften the yellow walls. I said austerely that it was futile to buy curtains when everything ends in death anyway. He agreed and asked if that meant we could pass on the kitchen remodel. For a second, the IFEX induced wraith in my brain went up against my Inner Woman. Then I sniffed and said faintly that the great American economy was depending on me, and even if all have to die, we don't have to die destitute.... Or with bad kitchens.

So, somehow I'll get better and I hope you will come to visit our brightly colored home because this house is just begging for the laughter and cheer of wonderful friends like you. And so am I.

With love,
Radhika.

PS: Since Janet asked, here's a recent picture of me at the apartment. As you can see, my hair has decided that it's going to pretend that chemotherapy is done. My hair has always had a stubborn refusal to conform and a strong habit of doing its own thing, flat irons and gels, notwithstanding. I am grateful to it, but I still intend to go wig shopping sometime. :)

Friday, September 16, 2011

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.

Wednesday, September 14, 2011

IFEX Day 1

Dear friends,
Day 1 of my IFEX treatment is over, and I've survived it fine! Since the last Mtx treatment, I've been anxious about this week. I can't remember much from my last round of IFEX, but what I do remember is not in the least bit pleasant. I have been dreading a repeat, even though Forscher, Susan, and Andre keep reminding me that I am in a different place now and so things are not likely to go as badly as they did. Andre pointed out that instead of thinking about how dreadful IFEX was, I should consider that it turned things around. As hard as it knocked me, it certainly also did damage to the cancer. And perhaps it will do so again.

These are good thoughts, and I do repeat them to myself, but underneath,I feel a tension in myself, as though I am waiting for the other shoe to drop. My last real memory of IFEX is coming in on Day 2, feeling nauseous, bewildered, and lost. Forscher came in to ask how I was doing, and even before I responded, I could see the concern in his eyes. Hardly had I gotten the words out of my mouth to tell him that I felt strange that he said he would reduce the strength of the drug and that would help with the confusion I was feeling. He did, and probably it helped, but I had already crossed the stage, and the rest of the week and the week after we got back home, I spent in a stupor, unaware of what was happening around me. After the fog lifted, I found myself in a deep depression that I could not understand. I couldn't stop crying, couldn't think of anything else but the pain I was in and how death would be a relief. I scared the daylights out of Andre by getting up from bed one night and declaring that I was going to the kitchen because that's where the knives are. Right now, I think back to that and cannot understand what was going on in my head -- those kitchen knives are blunt, I'd have had a miserable time trying to slice my wrists or hacking at my jugular vein (even if I knew where it's located)!  It seems funny now, but even when I laugh about it, it is with an uneasiness because I remember how earnest I was. 

The nurse yesterday explained to me that IFEX can cause neurotoxicity in the brain, and that is what likely happened tome the last time, but she said Forscher has changed the dosage I am getting this time and also decided not to start me before I got hydration and anti nausea drugs. I'm glad. When I saw Forscher today, he asked me if I was feeling the same way as I had the last time. I told him, "So far, no.", and asked him hesitantly if I should expect to lose my wits in the next few days. He said that he thought it was unlikely. Apparently, the reaction I had was an unusual one that happens rarely (ha ha) and was, he believes, exacerbated by the fact that I was on so many pain meds at that time. So, perhaps I won't become suicidal this time and that will be a good thing. 

Actually, I have the suicide thing resolved in my head. After I started on the Lexapro, I realized that it would not be suitable to indulge in such an act in the kitchen and have Mira come and view the remains. Baffled, I thought for two weeks and concluded that it would be best to take the knife and go out to the park behind our yard. It made a very romantic picture in my head -- a full moon shining down on the park bench, the leaves of the tall trees  rustling softly and the scent of the wet grass and earth. But when I discussed this with my dear friend, Anurag, he pointed out to me that blood factor remained and little kids come to the park (and little animals besides), so I had to abandon that plan. For the next weeks, I puzzled over trying to find a method of suicide that would not traumatize small children. I suppose the neurotoxicity in my brain is why it took me so long to remember the proximity of the Pacific Ocean coupled with the fact that I cannot swim. Since I've hit upon that, I feel more relaxed. Don't worry, dear friends, the fact that I am telling you all this is, I think, an indication that I have no intention of committing such a rash act. Nevertheless, it is a relief to me that there is a neat solution to my question. ;)

I'm just glad that my sense of humor is back. It was gone completely after IFEX last time. I remember watching Modern Family and not cracking a smile. I remember telling Ranjeeta and Andre that whenever I tried to write, it was all depressing, and their response that perhaps from this point on, I would only say profound things. They giggled about it, but i was close to tears. To be profound for the rest of my life seemed an unenduringly depressing prospect. Thankfully, that seems unlikely.

You know, dear friends, i was thinking today that even though this is the worst time in my life, I couldn't ask for better circumstances. I am so lucky to have a job with good health insurance that allows me to get treatment where I need to, a community of friends that is so wonderful in its support and kindness, friends who leave their own families to come take care of me and mine, a brother and sister-in-law who are so loving and kind, a beautiful apartment where I can stay during treatments, and a wonderful husband who takes such good care of me. I am so grateful to all of you for the love you send my way, and I hope that after this treatment things will improve enough to allow me to see some of you. Tonight, we see Leticia and Kent and I am so excited. They are such wonderful friends and seeing them will distract me from wondering about each little twitch my body makes.

Thank you all for walking this long journey with me. 
With love,
Radhika.

Thursday, September 8, 2011

Andre: Catastrophic Leave donations for Radhika


This message is only for our coworkers at CSUSM. For the rest of you there is nothing you can do to help, and there is also nothing to worry about despite the alarming sounding title.

Thanks first of all for all the support you gave us in the Spring semester when Radhika’s situation was dire, and I hope that all of you are off to a good start for the Fall semester. I turned in my, hopefully last ever, WPAF with 5 minutes to spare on Tuesday. Now we can focus our attention on getting ready for IFEX on Monday, which means going to the retreat and getting the house organized to be painted.

I heard from Human resources that those of you who work at Cal State San Marcos and want to donate vacation/sick leave days so that Radhika can remain on medical leave this Fall semester can now do so. The official call for donations will go out soon, but they already accept donations. In fact, unlike in the Spring when I didn't even get the chance to donate, this time I was the first one to turn in my form. Remember that in the Spring Radhika really only needed a handful of days, but her own leave days are now exhausted, so that she can really use your donations now. I will be on family medical leave as well, but don’t worry about me, since I have plenty of sick leave days left and will return to work in the Spring. Unlike Radhika I didn’t have to use any leave days this Spring or back in 2006 when she first had to deal with her cancer.

HR reminded me that administrators, faculty and staff can donate no more than 40 hours (in fact that is the limit for everybody in Bargaining Units 2 through 9) for total for the academic year. Just be aware if you donate the full amount to Radhika you won’t be able to donate for anybody else this year.   The link to the file to be filled out is under the letter C at

http://www.csusm.edu/fas/fasforms.html                

and you can return the completed form to Sue Gary in payroll (Craven 4600G) or send her a completed and signed form per email (sgary@csusm.edu) which is what I did. Thanks in advance to all our wonderful friends at CSUSM.

Best wishes,

Andre

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!