I want to start this update by thanking all of you for sending us your good thoughts on Thursday. The spiritual energy provided by you and by our visit to Amma gave us a welcome calmness last week.
On Tuesday (6/14) we drove to LA, because we were scheduled to have the methotrexate starting at 1:30 PM. These afternoon treatments don't work so well for us, because it is hard for us to get going in the morning, and then with some random traffic thrown in we were late for the appointment. Not exactly how one wants to start off, but at least we had the opportunity to see Mira off in the morning for her last week of school. We will probably try to leave the night before treatments, and have morning appointments, at least while Mira is on summer vacation.
The Tuesday went fine, after labs got back and premeds were administered, the MTX was given from 5-9PM. Radhika typically sleeps through most of that, and I catch up with my editorial work, since Cedars has a good wifi connection. When we got back to the LA apartment and had unloaded the car it was 10PM and we fell into bed. The next morning Radhika experienced some vomiting due to what is best described as motion sickness, but after she took her meds and got a few more hours of sleep, she felt much better. We had no problem getting to the nurse appointment for blood tests, and after that we drove down Santa Monica Blvd for fun. We thought we would get all the way to the ocean, but the traffic was so bad, that we stopped at a Westfield shopping mall and had a pleasant afternoon with a chocolate milkshake and early dinner instead. We were back at the apartment by 6PM, in time for her Leucovorin tablet, and an early bed time.
Thursday morning started off well, with us getting in on time for her 10:45AM CT scan. By 11:05AM we were in Forscher's office discussing the results, and were told that we could pretty much go home for the weekend right afterwards. The scan results were mostly good news: Radhika's one lung still looks as clear as it had before, and the one that had collapsed (until they removed the fluid in late March) remains open. Some of the tumor from that lung, as well as isolated spots on the other one, has calcified (i.e. turned into bone), which Forscher explained "is a reaction we see in osteosarcoma that is responsive to the chemo therapy." I figure that this must mean that in those places the cancer is dead. The cancer near the spine has shrunk somewhat, as we had expected from her very much improved sensation in the right arm.
So all in all, it hasn't grown anywhere, has shrunk in some places and died in others. Considering how dire things looked just 3 months ago that is definitely good news, and it makes sense to continue on the full course of 24 rounds since she is responding positively. Forscher also reiterated that because of the location surgery is not advisable, which is something that Radhika had not really wanted anyway, because of the trauma she went through in 2006. The bit of news that was hard for us was that Forscher hinted at a maintenance chemo drug that could be used after the 24 rounds: surgery to remove the primary tumor is essential to the standard treatment regimen, and it may have to be replaced by something else. Radhika had of course hoped to be declared "cancer free" by the end of the 24 rounds, but apparently it may not happen in that way. We left the discussion at that, since we learned that taking everything a day at a time is the best way to go. We still have quite a ways to go to until we finish the 24 rounds. There will be more scans along the way, and it makes little sense to focus our energy on speculation right now.
After this appointment I connected Radhika for 1000ml hydration and we went back to the apartment, so that Radhika could rest and I could pack up the car. The going was slow and on the way back home Radhika had the most nausea she has had in a while, probably due to recurrence of the motion sickness and feeling emotionally drained. Somehow we made it home by 4PM and Radhika went straight to bed for 2 hours. After 6PM we went to pick up Mira from her 3 fun packed days with the McDuffy family, and we all had dinner together at their house, during which Radhika seemed just fine.
On Friday we staid home and watched Star Wars IV for relaxation, because when she is physically down, the best things for Radhika are sleep and distraction. By the way we finished watching the animated Avatar series in LA this last week, and it really helped her since it is so entertainingly gripping. Next up for us is a 60+ hour long Korean drama series called "The great Queen Seondeok" that Radhika has grown quite fond of. Thanks to Marcia for getting the DVDs for us and to everybody who chipped in, because it will help us through the upcoming treatments.
Saturday I took Mira to gymnastics while field marshall Marcia spent time with Radhika. Radhika had a lot of stomach and emotional pain that day: chemo can chemically alter your emotions, and it attacks the fastest growing cells in the body, such as cancer, hair and stomach cells. I keep hoping that these side effects will become less pronounced as time goes on, but the time around the 4th day after the treatment can be more challenging than the actual treatment days. Sunday was a little better and Monday we had a really fun family outing with Mira and her friend Jillian to the Legoland waterpark.
Today we will do some stuff around the house, and pack since this evening we will go off to LA for Radhika's first Adriamycin+Cisplatin treatment tomorrow. Mira will spend the rest of the week with Bianca and Matthew and their extended family. Radhika is scheduled to spend Wednesday night in the hospital, but if things go well then we will be home again on Friday or Saturday. By some accounts this could be the most challenging round, but everybody has such widely differing experiences with these chemo drugs and we will just take it as it comes.
After this treatment we will have 2 weeks off, then MTX 6+7, then another 2 weeks off, followed by MTX 8+9. This puts us at the halfway point and into August, so that it seems like Mira's summer will not be interrupted too much by the treatments, and that we will be able to manage just by having "sleep overs" for her while she are away for MTX. I will post another update after this coming round.
Tuesday, June 21, 2011
Sunday, June 12, 2011
Andre's update
After 6 weeks it is time for another update. I am afraid it will be a long one, since by now I realize that these blog entries are like a chronicle of our journey for me. No matter how intense the experiences are at the moment, they recede into memory quickly as they are replaced by other events. If I don’t write any of this down, then I wonder how much I will remember even a year from now. I guess Radhika would say hopefully none of this horror, but there are also many wonderful moments of love and compassion from friends and strangers that are worth remembering. One such event was that when the email of requests for catastrophic leave for Radhika went around at the University on May 10th, by 3PM that day they already stopped taking donations since Radhika had enough to get her through the rest of the semester. Considering how busy CSUSM is in the last week of classes I found that quite stunning. Even days later they kept getting emails from people trying to donate, until eventually they sent out an announcement telling people to stop and wait for the fall semester. Radhika will need plenty of days for the fall, and I was told they will start accepting donations for that on August 23, so all those of you who want to donate can do so at that time. They will send around another announcement in late August or early September when the first rush of the semester has died down.
The spring semester ended for me on May 26th when I turned in the course grades right at the deadline. With 2 masters’ defenses, grading of final exams, making final grades and other wrap up stuff it was quite a blur, but I am mentally emerging from it again. Commencement (May 21) is always a nice cap stone to the academic year and being there to hood our Masters students Janina Patno (I jointly advised her with Radhika), Michael Santana, Gary Williamson and Joshua Lovelace made me feel good. They have all been good students over the years, and it reminds me of the rewarding aspects of being a Professor. Another reward is of course our good health insurance benefits, because every time I go over a medical bill (the MTX alone that is needed for one round costs $20,000) I wonder what happens to people without coverage.
The 3rd round of MTX (April 30- May 2) went OK for Radhika (actually my recollection is quite blurry already, which goes to show I should do these updates more frequently), and the first round of Adriamycin (Monday 5/9-5/11) went well enough that I could teach on the last day of classes (Thursday 5/12) and more importantly it took a big bite out of her cancer, as her last blog entry clearly shows. One unpleasant thing was that on Friday 5/13 we had to drive straight back to Cedars because she needed to get a Neulasta shot that we were unable to get in San Diego for technical reasons (related to insurance, but not really the insurances fault) but we were there for no more than an hour and drove straight back.
The nausea and constipation are still a problem (during and more so immediately after chemo), but the Nexium that was prescribed by Dr. Share seems by now to have largely eliminated the horrible acidity she had in her stomach. The Lexapro helps with the dark mood, and the Miralax helps with the constipation caused by the Fentanyl pain patch, but these are the only meds she is taking right now (quite the turnaround from 2 months ago). Controlling the constipation greatly reduces the nausea (and if it doesn’t there is Ativan)… you learn so much through trial and error. With all these things she went through the 4th round of MTX (5/31-6/2) quite well, except that we realize now that she needs more physical activity after the treatments. She ended up not being able to go back for MTX5 this past week, since she didn’t feel strong enough for it, so her next treatment will be MTX 5 this Tuesday (6/14 1:30PM), and that will hopefully allow us to return home on Thursday.
During the most trying weeks having Latha (4/17-24), Kali (4/23-30), Anurag (4/30-5/8) and Vandana (5/8-14) was immensely helpful to me, because they took great care of us. It gave me the time to take care of Radhika and my courses without going insane or feeling that Mira was too neglected. Our brave little Mira girl has held up really well: she fell sick with fever and stomach flu on May 1st and poor Anurag had to take care of her while Radhika and I were in LA, but otherwise she has been fine health wise. Her behavior has had ups (all the love she is showing Radhika and the beautiful poster she made that says “Every day my mom gets a little healthier and I like that (heart)”) and downs (there was one pretty spectacular tantrum in early May where she let of some massive steam), but over all I couldn’t be more proud of how she handles the situation given that she is barely 7 years old.
For Mira’s birthday she said that she didn’t want a party, but she wanted to go to Disneyland with Radhika and me. We were happy to make that wish of hers (and Radhika’s) come true on May 27th: it was conveniently a furlough Friday at Mira’s elementary school, and the first day of the summer schedule at Disneyland. There was a parade as well as fireworks, but fortunately it wasn’t as busy as I remember it from the last time I was there. We rented a room at the Tropicana Inn right across the main entrance for the night after, and they let us check in at noon already, so that Radhika could take a break there whenever she needed. They were very accommodating even though we had somehow messed up the online reservation. Radhika got a front of the line pass, as well as a wheelchair so that we could have a good Disney experience. Even though she ended up not using the wheelchair as much as I thought she would, it was still very useful and Mira sure liked it. Radhika was able to last a good 6 hours before she went back to the Tropicana for a 2 hour nap, during which she missed the light show and the spectacular firework show. After that we went out for dinner at a fusion place called Roy’s. It was a half hour walk, and we were all starving, I don’t know what we were thinking, but at least the food was good even if it was slow and pricey. We finally fell into bed around midnight.
Of course the long day at Disney may have contributed to the fact that we had to postpone MTX 5, but overall it was well worth it. It is events like this (and defiantly dancing with Radhika to “Staying alive” at Michael’s wedding just days after receiving the diagnosis in January) that I am sure will stay with me for a long time. Also, due to the postponement of MTX 5 we were able to fully enjoy another extra-ordinary event. The “hugging saint” Amma is currently at the LAX Hilton (6/10-14) and we were all able to see her on Friday 6/10, another furlough day for Mira. We stayed the night before at our apartment so that Mira would get to finally see it and that we would be able to be at the Hilton early to get good tickets. Tickets are free, but it was still a 3 hour wait to get our blessing hugs once the event started, which is actually not much time from what we have heard. But apart from the hug (which was very unrushed, even though one is handled until one finally gets there) with Mira by my side, two things will stand out for me. First is the memory of when we heard about the event back in February or March: June seemed so desperately far away, and Radhika was in such bad shape that both of us had serious doubts that she would actually make it this far, let alone in this good a shape. Second is the importance of keeping up the faith: at 10AM I noticed that I had lost my car keys somewhere at the Hilton. After repeatedly searching and asking for it, at 3PM I started calling the insurance to send somebody to unlock the car (the house keys were for some strange reason in the car) and I arranged for a rental car from the Hertz inside the Hilton, so that I could drive back home, get the spare car key, drive back to LA, return the rental and drive back in our own car. As I was getting ready to leave from the Hilton in the rental car at 5:45PM, Radhika came running with the keys. Somebody had just dropped them off at the Hotel Lost-and-found (I had asked there at least 3 times before) just like she predicted “Have faith, the situation will take care of itself, somebody will find the key”. There was just enough time to “return” the rental car (which never even left the parking garage) before Hertz closed at 6PM, and then we decided to stay for dinner as well. So we ended up staying 5 hours longer than I thought we would, but the whole event was oddly calming for the 3 of us. I say oddly because if anybody has ever seen the restlessness in a 7 year old, the frustration in a guy who just lost his car key in a place that is teeming with people, or the anguish in a woman dealing with cancer, then you wouldn’t think that these 3 people could be calm together under any circumstances. I am sure Radhika has much more to say about the event, but I will leave it at this.
Looking forward, I hope that with Amma’s blessing the next rounds (in fact all rounds) will go well, and that Radhika’s first scan since March, which will be this coming Thursday 6/16, will show some improvement. I know that the pain in Radhika’s arm that was caused from the tumor pressing on her spine has vastly improved, and Dr. Forscher previously said that that is a very good indicator of the state of the tumor, but actually seeing good progress on a scan would feel great. Right after the scans we will meet with Dr. Forscher to discuss the treatment plan, and if Radhika clears the MTX that day, then we drive home that same day. So please have Radhika in your prayers from the start of MTX 5 on Tuesday 6/14, but especially on 6/16.
The only other round we have scheduled so far is the first Adriamycin+Cisplatin round (Wednesday 6/22-Saturday 6/25), but it will most certainly be followed by 2-3 weeks of break, and then 2 more rounds of MTX putting us at the end of July. It looks very unlikely that Radhika will have another round of IFEX this summer, so that all of Radhika’s rounds will be only 2-4 days long. Because of this we decided that we don’t want to send Mira to stay with our families, but we’d rather keep her here even after her last day of school (which is also 6/16) and have her do extended sleepovers with friends during the treatments. In fact she so thoroughly enjoyed the first sleepover with Ranjeeta and Karinya (during MTX 4), that she was disappointed when the MTX 5 sleep over with the McDuffy’s had to be postponed to this coming week. For ADR+CSP she will be staying with Bianca and her family. She will also have an MTX sleepover with her friend Emily, which she had been badgering us about even before we realized that these sleepovers would become necessary.
Undoubtedly there will be more to post here after our meeting with Dr. Forscher on Thursday, so I will sign off for now.
The spring semester ended for me on May 26th when I turned in the course grades right at the deadline. With 2 masters’ defenses, grading of final exams, making final grades and other wrap up stuff it was quite a blur, but I am mentally emerging from it again. Commencement (May 21) is always a nice cap stone to the academic year and being there to hood our Masters students Janina Patno (I jointly advised her with Radhika), Michael Santana, Gary Williamson and Joshua Lovelace made me feel good. They have all been good students over the years, and it reminds me of the rewarding aspects of being a Professor. Another reward is of course our good health insurance benefits, because every time I go over a medical bill (the MTX alone that is needed for one round costs $20,000) I wonder what happens to people without coverage.
The 3rd round of MTX (April 30- May 2) went OK for Radhika (actually my recollection is quite blurry already, which goes to show I should do these updates more frequently), and the first round of Adriamycin (Monday 5/9-5/11) went well enough that I could teach on the last day of classes (Thursday 5/12) and more importantly it took a big bite out of her cancer, as her last blog entry clearly shows. One unpleasant thing was that on Friday 5/13 we had to drive straight back to Cedars because she needed to get a Neulasta shot that we were unable to get in San Diego for technical reasons (related to insurance, but not really the insurances fault) but we were there for no more than an hour and drove straight back.
The nausea and constipation are still a problem (during and more so immediately after chemo), but the Nexium that was prescribed by Dr. Share seems by now to have largely eliminated the horrible acidity she had in her stomach. The Lexapro helps with the dark mood, and the Miralax helps with the constipation caused by the Fentanyl pain patch, but these are the only meds she is taking right now (quite the turnaround from 2 months ago). Controlling the constipation greatly reduces the nausea (and if it doesn’t there is Ativan)… you learn so much through trial and error. With all these things she went through the 4th round of MTX (5/31-6/2) quite well, except that we realize now that she needs more physical activity after the treatments. She ended up not being able to go back for MTX5 this past week, since she didn’t feel strong enough for it, so her next treatment will be MTX 5 this Tuesday (6/14 1:30PM), and that will hopefully allow us to return home on Thursday.
During the most trying weeks having Latha (4/17-24), Kali (4/23-30), Anurag (4/30-5/8) and Vandana (5/8-14) was immensely helpful to me, because they took great care of us. It gave me the time to take care of Radhika and my courses without going insane or feeling that Mira was too neglected. Our brave little Mira girl has held up really well: she fell sick with fever and stomach flu on May 1st and poor Anurag had to take care of her while Radhika and I were in LA, but otherwise she has been fine health wise. Her behavior has had ups (all the love she is showing Radhika and the beautiful poster she made that says “Every day my mom gets a little healthier and I like that (heart)”) and downs (there was one pretty spectacular tantrum in early May where she let of some massive steam), but over all I couldn’t be more proud of how she handles the situation given that she is barely 7 years old.
For Mira’s birthday she said that she didn’t want a party, but she wanted to go to Disneyland with Radhika and me. We were happy to make that wish of hers (and Radhika’s) come true on May 27th: it was conveniently a furlough Friday at Mira’s elementary school, and the first day of the summer schedule at Disneyland. There was a parade as well as fireworks, but fortunately it wasn’t as busy as I remember it from the last time I was there. We rented a room at the Tropicana Inn right across the main entrance for the night after, and they let us check in at noon already, so that Radhika could take a break there whenever she needed. They were very accommodating even though we had somehow messed up the online reservation. Radhika got a front of the line pass, as well as a wheelchair so that we could have a good Disney experience. Even though she ended up not using the wheelchair as much as I thought she would, it was still very useful and Mira sure liked it. Radhika was able to last a good 6 hours before she went back to the Tropicana for a 2 hour nap, during which she missed the light show and the spectacular firework show. After that we went out for dinner at a fusion place called Roy’s. It was a half hour walk, and we were all starving, I don’t know what we were thinking, but at least the food was good even if it was slow and pricey. We finally fell into bed around midnight.
Of course the long day at Disney may have contributed to the fact that we had to postpone MTX 5, but overall it was well worth it. It is events like this (and defiantly dancing with Radhika to “Staying alive” at Michael’s wedding just days after receiving the diagnosis in January) that I am sure will stay with me for a long time. Also, due to the postponement of MTX 5 we were able to fully enjoy another extra-ordinary event. The “hugging saint” Amma is currently at the LAX Hilton (6/10-14) and we were all able to see her on Friday 6/10, another furlough day for Mira. We stayed the night before at our apartment so that Mira would get to finally see it and that we would be able to be at the Hilton early to get good tickets. Tickets are free, but it was still a 3 hour wait to get our blessing hugs once the event started, which is actually not much time from what we have heard. But apart from the hug (which was very unrushed, even though one is handled until one finally gets there) with Mira by my side, two things will stand out for me. First is the memory of when we heard about the event back in February or March: June seemed so desperately far away, and Radhika was in such bad shape that both of us had serious doubts that she would actually make it this far, let alone in this good a shape. Second is the importance of keeping up the faith: at 10AM I noticed that I had lost my car keys somewhere at the Hilton. After repeatedly searching and asking for it, at 3PM I started calling the insurance to send somebody to unlock the car (the house keys were for some strange reason in the car) and I arranged for a rental car from the Hertz inside the Hilton, so that I could drive back home, get the spare car key, drive back to LA, return the rental and drive back in our own car. As I was getting ready to leave from the Hilton in the rental car at 5:45PM, Radhika came running with the keys. Somebody had just dropped them off at the Hotel Lost-and-found (I had asked there at least 3 times before) just like she predicted “Have faith, the situation will take care of itself, somebody will find the key”. There was just enough time to “return” the rental car (which never even left the parking garage) before Hertz closed at 6PM, and then we decided to stay for dinner as well. So we ended up staying 5 hours longer than I thought we would, but the whole event was oddly calming for the 3 of us. I say oddly because if anybody has ever seen the restlessness in a 7 year old, the frustration in a guy who just lost his car key in a place that is teeming with people, or the anguish in a woman dealing with cancer, then you wouldn’t think that these 3 people could be calm together under any circumstances. I am sure Radhika has much more to say about the event, but I will leave it at this.
Looking forward, I hope that with Amma’s blessing the next rounds (in fact all rounds) will go well, and that Radhika’s first scan since March, which will be this coming Thursday 6/16, will show some improvement. I know that the pain in Radhika’s arm that was caused from the tumor pressing on her spine has vastly improved, and Dr. Forscher previously said that that is a very good indicator of the state of the tumor, but actually seeing good progress on a scan would feel great. Right after the scans we will meet with Dr. Forscher to discuss the treatment plan, and if Radhika clears the MTX that day, then we drive home that same day. So please have Radhika in your prayers from the start of MTX 5 on Tuesday 6/14, but especially on 6/16.
The only other round we have scheduled so far is the first Adriamycin+Cisplatin round (Wednesday 6/22-Saturday 6/25), but it will most certainly be followed by 2-3 weeks of break, and then 2 more rounds of MTX putting us at the end of July. It looks very unlikely that Radhika will have another round of IFEX this summer, so that all of Radhika’s rounds will be only 2-4 days long. Because of this we decided that we don’t want to send Mira to stay with our families, but we’d rather keep her here even after her last day of school (which is also 6/16) and have her do extended sleepovers with friends during the treatments. In fact she so thoroughly enjoyed the first sleepover with Ranjeeta and Karinya (during MTX 4), that she was disappointed when the MTX 5 sleep over with the McDuffy’s had to be postponed to this coming week. For ADR+CSP she will be staying with Bianca and her family. She will also have an MTX sleepover with her friend Emily, which she had been badgering us about even before we realized that these sleepovers would become necessary.
Undoubtedly there will be more to post here after our meeting with Dr. Forscher on Thursday, so I will sign off for now.
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