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.
Monday, May 9, 2011
I'm back ... :)
I've wrested control of my blog back from my ghostwriter ... :) I really ought to be more grateful to him than that sentence indicates. Still, I am feeling well enough to write today and I just heard Julianna's beautiful voice half night long to inspire me .... how can I NOT write? If you haven't heard the song, click on her name above.
Truthfully, though, writing this post to you feels strange ... I feel so disconnected from the world right now. Julianna, I have no idea what inspired you to choose the words you did, but they are perfect for me to hear. I do need to open my eyes to the grace and love that is pouring into my life from my friends right now. I see reminders of it everywhere, everyday. And I feel how all of you are indeed fighting this with me …have fought it for me, in fact, these past weeks.
After that IFEX round, I was lost in a deep mental fog. The nausea was awful, but worse, was the feeling of absolute emptiness that I came back to. It felt endlessly grey everywhere I looked and my life seemed not worth living. Some of you who kept vigil over me, Marcia, Ranjeeta, Ruth, saw me through those dark days, while Andre held me through the nights whose end I dreaded because I woke up in tears at the prospect of another day. Even then, I could hear your messages of love … it just seemed so far away, as though I was enclosed in a bubble that would not allow anything but the gloomiest of thoughts to penetrate. I didn’t understand what was happening and I felt no strength to get up and move; in any case, it didn’t seem that there was any direction to move in. Healing, health, life itself, seemed an unreachable vision that I had best give up on. I read some of your beautiful e-mails and cried – why would you think that it was worthwhile for me to live? And surely, I couldn’t live this way, empty of feeling anything but sadness, suffocated by the certainty that my life so far had been worthless and I had best not waste any more time and effort on it.
After a week of this, prodded by Marie’s advice, I told Andre and Kali that I needed something, some medication because I knew that, though these feelings might predate my treatment, there was no way I could go on with them. And, to our relief, Dr. Forscher prescribed the medicine that our trusted friend, Suvrat, recommended. Lexapro came into my life like a light beam. Within a day of having it, I actually woke up without tears, and now I am convinced that a minimum dose of it should just be added to the water supply!
It was partially the Lexapro and partially Andre continuously pointing out to me that my pain was lessening that persuaded me to go back to Cedars for the MTX round. I went with so much trepidation but with my dear friend, Kali’s advice ringing in my ears – SURRENDER, she said to me. And so I did. Mentally, I gave myself over to the treatment, decided that I was not going to try to control any of it, that I was going to trust in whatever happened and just sleep. So, we stayed in Cedars for 8 hours and I slept for most of the time and then we went back to our sanctuary, that beautiful apartment.
Sitting there on the couch, feeling numb and dazed, I looked around and saw all the love that was pouring into my life. I saw the love and care with which Leticia and Kent had set up the place, saw the beautiful blanket from Vivienne and Marie, heard Andre tell me about the realtor who helped Leticia find the place and marveled at the kindness that was filling my world. And when Andre hugged me and told me that I deserved all of it, I opened my mouth to deny it and found that I couldn’t. Surrounded by such powerful messages of love from so many people whom I love and respect, it seemed crazy, childish to cling to this belief that I was not worthwhile. So, that’s another thing that I’ve decided to let go off, though I must confess it comes back after every treatment. Still, with all the reminders I have from you, I fight that feeling and I am so grateful to each of you for giving me these weapons. Oh, Julianna, how perfectly your song says it all! Thank you!
I have done so much better on the past rounds. This last round of Adriamycin went well. I listened to Julianna’s song all through the nights and I was able to withstand the nausea, thanks in part to a lovely gift from Anurag and Latha of DVDs of a show called Avatar. Have you seen it? It’s an animation series on Nicklodean that’s just lovely. It’s gripping, funny, and addictive. Every time, nausea threatened, we would stick a DVD into our player and I would watch until my system quite forgot that it needed to throw up!
The best news is that the pain in my arm has diminished greatly. I am still on the pain patch but my fingers feel much better (I can write again and see, I’m typing again!) – a sign that the chemo is kicking the tumors. Thank God! It reconciles me so much more to the whole treatment, though I still whine about it being so long.
I started writing this blog entry on May 9 after a lovely Mothers Day with Mira, Andre, and Anurag, and I had hoped that I would be able to finish it during the treatment, but the ADR, while kicking the tumors out, also knocked me back a little. It’s taken me two weeks to come to the point of wanting to turn the computer on again. The odd thing is that once I feel better emotionally, my mind keeps coming up with these things that I want to do, write the blog, read my e-mail, call a friend, but it sort of ends there. My body refuses to follow through. The effort to do any of things that I think I want to do seems more than I can exert – I hate feeling that way, and that ends that feeling better moment. It’s frustrating! Then I sit there and wonder how I can possibly have such incredible friends and it seems that this, like the meaning of life, is a mystery I cannot solve right now. It’s comical – exactly 3 days after every treatment, I sit on my bed in tears and ask Andre what the purpose of life is, and he tells me austerely that this is not a question I should be investigating while on chemotherapy. Perhaps he’s right, but it is a question that occurs to me very forcefully at that time.
I have a new look now. What do you think? 
I had my head shaved a month ago. Marcia and Linda were with me, holding my hands and stopping me from feeling miserable about it. I am used to it now and I even like it. Still, I want to go wig shopping soon. After all, what other opportunity am I going to get to try out different hair styles all at once? And won’t it be fun to try different colored hair? Can you picture me with a pink Mohawk? Mira is very excited and I rather think that I will need to get something in pink to please her. She has been wonderful through all of this, though we have had some meltdowns. It was her birthday yesterday and I was actually able to make some cupcakes for her. I felt so proud of myself! We plan to take her to Disneyland next Friday (we’ll get a hotel room so that I can take a break in between). I think back to January when reading to her at night was too hard for me to do and I am so grateful for this now. As hard as this regimen is, I do have good days and as my best friend, Kali, keeps reminding me, I need to remember that when the bad days come.
We go back to L.A. for the next round of MTX on the Tuesday, May 31, after Memorial Day. We will be up there on Tuesday, Wednesday, Thursday, and then back home to recover before returning the following week. So, I still have this coming week to enjoy and it’s wonderful that the semester is over and Andre will cease to be torn between taking care of his students and his family. Thank you so much to all of you who have helped him keep his sanity through this tough time. He is such a source of strength for me – I doubt that I could make it without his love.
Thank you to all of you who donated for my catastrophic leave. I deeply appreciate your generosity. I just read Stephen and Vivienne’s comments and I feel special to belong to such a wonderful community. I look at all of you and think how lucky I am to know you and to have you in my lives. Thank you! And thank you to Julianna and Tomas, your music is so amazing, so beautiful and Vivienne is right, I will take it for my anthem to heal and get well.
With love to all of you,
Radhika.
Saturday, April 30, 2011
Andre: MTX 2 + 3
Wednesday 4/20- Friday 4/22 Radhika had her second round of MTX. It went MUCH better than the first round: she got patches for nausea and pain, and a lot of IV nausea meds, and lo and behold nausea was not nearly as much of a problem. Just once we weren't careful and the bicarbonate came back up since she had it too close to drinking water, but otherwise she was not that even all that nauseous.
Wednesday we got to Cedars at 10AM, and after various tests, IV premeds, an appointment with the gastro-enterologist and of course the 4 hour course of MTX we left Cedars at 11PM after a last round of benedryl & reglan. The night was uneventful. With interruptions Radhika slept from 1PM Wednesday to 10 AM Thursday. She hadn't slept well for 2 days in anticipation, so when she was finally at Cedars she just crashed. On Thursday we went to Cedars for less than an hour for a blood test, but other than that we staid in the apartment. We went back for another blood test and consultations with Susan and Forscher on Friday, and then we were allowed to go back home.
Other than the adjustment in meds and the fact that they slightly lowered her dose of MTX, the apartment is making a huge difference to our experience. It is truly BEAUTIFUL, and it already feels like home away from home. It is 8-10 minutes from Cedars (traffic is no problem) and it is so peaceful and quiet, surrounded by trees, in a safe neighborhood, and lovingly furnished and equipped by Leticia, Marie and Vivienne ... thanks to all of you, this really helps with Radhika's sense of well-being. The first two rounds were scary and the hospital seemed like the safest place to be; now it feels like the apartment is the place we want to get to as fast as we can from the hospital every time we are here ... which is the way it ought to be!
With Forscher and Susan being on vacation the week of April 24-29, the third round of MTX was scheduled for today (April 30) and in fact that is where I am writing from: Room 2 (our room these last couple of times) in the Osher cancer center at Cedars. And so far so good, Radhika just finished the MTX (mostly sleeping, even though we did watch the end of the movie "Secretariat" which we had started 2 weeks ago, not a bad movie), and then in half an hour we will head out from here. I will let you all know early next week how it all went.
We made good use of the week off. After Latha left Sunday morning, Radhika's best friend from high school Kali (who now lives near Atlanta) took care of her for 6 days. Kali really helped Radhika by tailoring a diet specifically to her cancer situation and more importantly she was there to faithfully administer it as well. Radhika has so many amazing friends and you all keep her spirits up with every message of encouragement. Radhika's pain has drastically lessened (she just has to change the Fentanyl patch every 3 days and the oral Dilaudid is basically not needed anymore), and the fatigue has also gone down in no small part due to Kali's loving care. Radhikas attitude is also mostly positive these days, the Lexapro definitely helps with that. Finally, thanks to the CORAM home nursing service which takes care of her blood work in the off weeks, she has her own hydration pump (prescribed by Forscher, administered by yours truly), which we have now taken with us to the apartment: this cuts the amount of water she needs to actually drink down to less than half so that hopefully THIS time the bicarb won't be a problem at all.
Looking forward, we will meet Susan on Monday to discuss the further plan of action, but right now it looks like Radhika will get Adriamycin on Monday May 9th, and after that she will get 1-2 weeks off before the next round ... by that time my finals should be graded, summer break here I come!
Alright, we will be heading back to the apartment real soon here and I have to wrap things up now. Be well!
Wednesday we got to Cedars at 10AM, and after various tests, IV premeds, an appointment with the gastro-enterologist and of course the 4 hour course of MTX we left Cedars at 11PM after a last round of benedryl & reglan. The night was uneventful. With interruptions Radhika slept from 1PM Wednesday to 10 AM Thursday. She hadn't slept well for 2 days in anticipation, so when she was finally at Cedars she just crashed. On Thursday we went to Cedars for less than an hour for a blood test, but other than that we staid in the apartment. We went back for another blood test and consultations with Susan and Forscher on Friday, and then we were allowed to go back home.
Other than the adjustment in meds and the fact that they slightly lowered her dose of MTX, the apartment is making a huge difference to our experience. It is truly BEAUTIFUL, and it already feels like home away from home. It is 8-10 minutes from Cedars (traffic is no problem) and it is so peaceful and quiet, surrounded by trees, in a safe neighborhood, and lovingly furnished and equipped by Leticia, Marie and Vivienne ... thanks to all of you, this really helps with Radhika's sense of well-being. The first two rounds were scary and the hospital seemed like the safest place to be; now it feels like the apartment is the place we want to get to as fast as we can from the hospital every time we are here ... which is the way it ought to be!
With Forscher and Susan being on vacation the week of April 24-29, the third round of MTX was scheduled for today (April 30) and in fact that is where I am writing from: Room 2 (our room these last couple of times) in the Osher cancer center at Cedars. And so far so good, Radhika just finished the MTX (mostly sleeping, even though we did watch the end of the movie "Secretariat" which we had started 2 weeks ago, not a bad movie), and then in half an hour we will head out from here. I will let you all know early next week how it all went.
We made good use of the week off. After Latha left Sunday morning, Radhika's best friend from high school Kali (who now lives near Atlanta) took care of her for 6 days. Kali really helped Radhika by tailoring a diet specifically to her cancer situation and more importantly she was there to faithfully administer it as well. Radhika has so many amazing friends and you all keep her spirits up with every message of encouragement. Radhika's pain has drastically lessened (she just has to change the Fentanyl patch every 3 days and the oral Dilaudid is basically not needed anymore), and the fatigue has also gone down in no small part due to Kali's loving care. Radhikas attitude is also mostly positive these days, the Lexapro definitely helps with that. Finally, thanks to the CORAM home nursing service which takes care of her blood work in the off weeks, she has her own hydration pump (prescribed by Forscher, administered by yours truly), which we have now taken with us to the apartment: this cuts the amount of water she needs to actually drink down to less than half so that hopefully THIS time the bicarb won't be a problem at all.
Looking forward, we will meet Susan on Monday to discuss the further plan of action, but right now it looks like Radhika will get Adriamycin on Monday May 9th, and after that she will get 1-2 weeks off before the next round ... by that time my finals should be graded, summer break here I come!
Alright, we will be heading back to the apartment real soon here and I have to wrap things up now. Be well!
Monday, April 18, 2011
Andre's update: 2 weeks off, MTX next
Dear friends,
after two weeks at home we are getting ready for the next round. The chest x-ray Radhika took in Oceanside today indicates that there is no fluid in her lungs, and so tomorrow evening we will drive back to LA and then on Wednesday Radhika will start her second round of Methotrexate at Cedars.
These two weeks have seen some ups and downs, but in sum total they were good. Radhika came home on a Wednesday feeling very weak and still nauseated from the IFEX, but the constipation and the pain (thanks to the Fentanyl patch and the chemo being effective) were pretty much gone. The most difficult part was that Radhika struggled with depression, and felt desperately hopeless for the first week. After that, with the help of Ruth and Ranjeeta, we came to the realization that only part of that was the magnitude of the situation, but that the chemo also can affect your brain chemistry. I am very grateful that Dr. Forscher and his nurse Susan were available for us on the phone even during these off weeks, and that Dr. Forscher consulted an expert at Cedars and they prescribed Lexapro for Radhika (coincidentally the same drug that our friend Suvrat recommended.) The difference that half a pill of that made in just one night was astounding: Radhika woke up with a real smile on Saturday for the first time in weeks. Marcia saw first hand how much Radhika turned around in such a short time.
The nausea is much better, as long as Radhika watches what she eats. Food that is too acidic doesn't agree with her: she threw up a batch of blueberries one evening, but otherwise she hasn't had any incidents. We also try to be careful with garlic for dinner, since that sometimes keeps her up at night. I think her stomach is pretty delicate right now, and part of the nausea during the first 2 rounds was from taking too many medicines orally, especially the bicarbonate during MTX round 1, and the cocktail of nausea/pain/constipation pills during IFEX round 1. Tomorrow she will get a 5 day nausea patch (Sancuso) that should help keep the nausea down during MTX round 2, and we know now that if she feels seasick again what to do. I hope that between the patches and the IV drugs there won't be as much need for pills.
As far as the pain goes we had a scare, when on the first weekend home her back and shoulders started hurting. We both thought that the cancer was back with a vengeance, but a call to the on-call nurse Ulysses at Cedars reassured me: after IFEX your white blood cell count drops, so just before you go home they give you a shot of Neulasta to stimulate the bone marrow (which is of course in the bones!) to make white blood cells. He suggested Advil, and it worked rapidly to reduce her pain, and her white blood cell count recovered very rapidly. The last 3 days Radhika's pain has slowly been coming back again, but it is still nowhere near where it was 3 weeks ago. It is time to go for the next round.
One thing that makes me very happy is that thanks to Leticia we now have an apartment in LA for 8 months that, thanks in large part to Vivienne, Leticia, Kent and Marie, is already fully furnished and equipped. We only saw the outside the day before we left from Cedars 2 weeks ago, but Leticia has described it so vividly to me that I am really looking forward to seeing it. I know they have put a lot of thought and effort into making it a home away from home for us, which will give us the chance to recuperate between treatments.
Another nice thing is that our friend Latha just arrived for a week (she will take care of Mira while we are at Cedars), and then Kali will come for a week, followed by Anurag, and finally Radhu (all of whom will stay for a week to get me to the end of the semester.) We don't exactly know yet what the treatment plan will be, but I think that if the MTX this week is successful, then next week there will be MTX as well, followed by IFEX (it would be a reduced dose, like what she was getting at the end last time) or ADR the week after that.
Tax day today has not been kind to us, but that was more than made up by the fact that Radhika has no water in her lungs. It isn't always easy right now but with friends like you we know we can make it!
after two weeks at home we are getting ready for the next round. The chest x-ray Radhika took in Oceanside today indicates that there is no fluid in her lungs, and so tomorrow evening we will drive back to LA and then on Wednesday Radhika will start her second round of Methotrexate at Cedars.
These two weeks have seen some ups and downs, but in sum total they were good. Radhika came home on a Wednesday feeling very weak and still nauseated from the IFEX, but the constipation and the pain (thanks to the Fentanyl patch and the chemo being effective) were pretty much gone. The most difficult part was that Radhika struggled with depression, and felt desperately hopeless for the first week. After that, with the help of Ruth and Ranjeeta, we came to the realization that only part of that was the magnitude of the situation, but that the chemo also can affect your brain chemistry. I am very grateful that Dr. Forscher and his nurse Susan were available for us on the phone even during these off weeks, and that Dr. Forscher consulted an expert at Cedars and they prescribed Lexapro for Radhika (coincidentally the same drug that our friend Suvrat recommended.) The difference that half a pill of that made in just one night was astounding: Radhika woke up with a real smile on Saturday for the first time in weeks. Marcia saw first hand how much Radhika turned around in such a short time.
The nausea is much better, as long as Radhika watches what she eats. Food that is too acidic doesn't agree with her: she threw up a batch of blueberries one evening, but otherwise she hasn't had any incidents. We also try to be careful with garlic for dinner, since that sometimes keeps her up at night. I think her stomach is pretty delicate right now, and part of the nausea during the first 2 rounds was from taking too many medicines orally, especially the bicarbonate during MTX round 1, and the cocktail of nausea/pain/constipation pills during IFEX round 1. Tomorrow she will get a 5 day nausea patch (Sancuso) that should help keep the nausea down during MTX round 2, and we know now that if she feels seasick again what to do. I hope that between the patches and the IV drugs there won't be as much need for pills.
As far as the pain goes we had a scare, when on the first weekend home her back and shoulders started hurting. We both thought that the cancer was back with a vengeance, but a call to the on-call nurse Ulysses at Cedars reassured me: after IFEX your white blood cell count drops, so just before you go home they give you a shot of Neulasta to stimulate the bone marrow (which is of course in the bones!) to make white blood cells. He suggested Advil, and it worked rapidly to reduce her pain, and her white blood cell count recovered very rapidly. The last 3 days Radhika's pain has slowly been coming back again, but it is still nowhere near where it was 3 weeks ago. It is time to go for the next round.
One thing that makes me very happy is that thanks to Leticia we now have an apartment in LA for 8 months that, thanks in large part to Vivienne, Leticia, Kent and Marie, is already fully furnished and equipped. We only saw the outside the day before we left from Cedars 2 weeks ago, but Leticia has described it so vividly to me that I am really looking forward to seeing it. I know they have put a lot of thought and effort into making it a home away from home for us, which will give us the chance to recuperate between treatments.
Another nice thing is that our friend Latha just arrived for a week (she will take care of Mira while we are at Cedars), and then Kali will come for a week, followed by Anurag, and finally Radhu (all of whom will stay for a week to get me to the end of the semester.) We don't exactly know yet what the treatment plan will be, but I think that if the MTX this week is successful, then next week there will be MTX as well, followed by IFEX (it would be a reduced dose, like what she was getting at the end last time) or ADR the week after that.
Tax day today has not been kind to us, but that was more than made up by the fact that Radhika has no water in her lungs. It isn't always easy right now but with friends like you we know we can make it!
Thursday, April 7, 2011
Andre’s update, Round 3: Ifosfamide (IFEX).
Round 3 was a long one: we drove to LA on Tuesday 3/29 and we returned home Wednesday 4/6.
Tuesday 3/29 was a long day of teaching for me, but it felt like a relief: I had been teaching 3 courses this semester, but the weekend before Round 3 started I realized (with Radhika's help ... what would I do without her?) that I can't keep my sanity while teaching 3 different preps, so I decided to take a 20% pay cut and drop one of my courses, Math 115 College Algebra. I am very thankful that our chair Rick Fierro and our Dean's office made it all happen on short notice, and that Michael Santana (who will start his math PhD at our alma mater, the University of Illinois in the Fall) agreed to take on this course. God bless all of them and Olaf Hansen who had been subbing for me in 115 until then. I think my students will all be better off this way too. Overall I can’t speak highly enough of how everybody at the University has been helping out (Brooks Reid and Michael Santana have also been subbing in my other courses) in ways big and small.
So teaching 115 that day for the last time felt like a relief, and the drive to LA went OK. The first day of the treatment wasn't too bad, but soon enough the problems started: nausea, pain and constipation. Things got gradually worse, until the weekend physician, Dr. Natale, prescribed a Fentanyl patch for the pain (rather than the oral medicine she had been getting before): the patch meant no more juggling pain meds against nausea, and her pain has been mostly under control since then. After 6 days (Tuesday-Saturday) she finally had a bowel movement again (the MiraLax suggested by the pain doctor, Dr. Wolcott, helped) and that took care of one part of the pain. Not having to take so many pills any more helped the stomach as well, and the constipation hasn’t been a problem since then.
IFEX works by constant Infusion (20 hours per day) and that part was OK for the first 2-3 days, but then it got increasingly harder: she had a lot of nausea over the weekend, and she got increasingly weaker. On Monday she got her last IFEX pump, but getting her into the hospital was more and more of a challenge. On Tuesday, when we went to return the IFEX pump I didn’t think about getting her a wheelchair to the curb, but instead she almost collapsed on me in the lobby. Thank god that the receptionists at Cedar Sinai are really nice and brought out a chair for her. I thought that just the thought of getting rid of the pump and the accompanying humming noise would make things easier for her. But the Mesna rescue drug she got that day just weakened her more, and that night we slept no more than 2 hours at a stretch. Wednesday she went to get more hydration and a scheduled shot to boost her blood count, she could barely walk, but that’s what wheelchairs are for. They gave her an IV with Reglan and Benedryl to combat the nausea and she also has been taking Ativan under the tongue for break through nausea, and that did the trick to get her home on Wednesday. She was so eager to get out, and just the fact of being on the road home gave some relief to both of us. Radhika also has two nausea patches: one that replaced the Zofran, a strong oral antinausea drug, and the other one behind the ear that deals with a motion sickness nausea she has developed (whenever she got up or turned in bed she got seasick.) We still don’t really know why Radhika has THAT much nausea (MTX and IFEX are not “supposed to do that”), and the only thing we have heard is that young women typically experience more nausea, especially if they had problems with morning sickness, like Radhika did with Mira. Of course Treigh had no such problems, so we hope that things will get better for Radhika.
Being home has been a relief (Ranjeeta had made some Indian comfort food for Radhika, rice with daal), with the only sad part being that my sister Hannah had to go back to Germany yesterday (Thursday). Hannah still did all our laundry on Wednesday night, I really couldn’t ask for a better sister, especially with the way she looked after Mira during Mira’s Spring Break. Radhika’s healer friend Ruth did a Reiki/massage session with her Wednesday night, so despite our crummy bed (we really need a better one), Radhika slept reasonably well that night. Yesterday Janet McDaniel (thanks again for the lemon and the roses) drove Hannah to the airport, Mira spent the day with her friend Emily, and Marcia (god bless her soul!) spent the day with Radhika so I could go to campus to teach my classes and catch up with some other school work. Marcia said that she had an OK day taking care of Radhika, but I think it takes somebody who has had to deal with cancer before, to be ready for the nausea, depression, and fatigue that Radhika is going through. Thank god the nurses and doctors all said that after a few days these side effects of the chemo will improve, so next week should be a lot better. She is currently getting a home nurse (Patricia from Coram health services) to take her lab work and give her hydration, and not having to go anywhere for the next few days should help too.
Another item worth reporting is that Leticia has come through wonderfully and found us a beautiful, well maintained 1 bedroom apartment on 5669 San Vicente Boulevard, a mere 5-10 minutes (depending on the lights) from Cedars. Radhika and I already looked around in the neighborhood, and the area has good energy. The apartment has a garage, ceiling fans, AC, hardwood floors, and a balcony, for $1425 a month. We already put a deposit down and the lease will start on the 15th. Thanks also to Vivienne Bennett (who will help Leticia getting the apartment furnished), to Leticia’s husband Kent who drove around with her to look at places, and to the wonderful people at Loyola Marymount who got Leticia in touch with the realtor Julia Kuleck (the wife of the Associate Dean of graduate studies in the College of Science and Engineering at LMU) who was the one to make the contact with the landlord (who seems very nice as well) and helped Leticia negotiate an 8 month lease, instead of the usual 12 months. Thanks also to the people at the Vedanta Society in Hollywood, who gave us a home for these past 3 rounds.
Looking ahead we are glad that Radhika’s friends Latha (4/17-4/24) and Kali (4/23-4/30) will be able to come and spend a week to help Radhika and me cope around the house and with everything else that is going on. After that her cousin Radhu will stay a week, followed by Anurag, and this should be able to get me to the end of the semester without going crazy. Once that is all over we will have a much clearer idea of how the summer will go (especially after Mira’s school gets over.)
As far as Radhika’s treatment goes, they are checking her blood values twice a week, because with IFEX one expects a drop in white blood cells about a week after the treatment, which should then recover in another week or so. Her next round will start on a Wednesday (either 4/20 or 4/27) and it will be a short round (2-3 days) of either Methotrexate (if all goes well) or Adriamycin. The issue is the fluid in her lungs: even though they did not find high values of MTX in the 350 ml they removed the week after round 1, Dr. Forscher is concerned that this could happen next time. MTX is given in very high dose and it is important that its levels go down exponentially fast after the first day; if the MTX builds up somewhere and then seeps back slowly into the body, this could be dangerous. So the plan is for Radhika to get a chest x-ray on 4/19 and if there is no fluid in the lungs, then MTX should be safe; otherwise she would receive ADR (which is the harsher of the two drugs, because it can affect the heart.)
Thanks again to all of you who are sending love, help and prayers our way on this journey!
Tuesday 3/29 was a long day of teaching for me, but it felt like a relief: I had been teaching 3 courses this semester, but the weekend before Round 3 started I realized (with Radhika's help ... what would I do without her?) that I can't keep my sanity while teaching 3 different preps, so I decided to take a 20% pay cut and drop one of my courses, Math 115 College Algebra. I am very thankful that our chair Rick Fierro and our Dean's office made it all happen on short notice, and that Michael Santana (who will start his math PhD at our alma mater, the University of Illinois in the Fall) agreed to take on this course. God bless all of them and Olaf Hansen who had been subbing for me in 115 until then. I think my students will all be better off this way too. Overall I can’t speak highly enough of how everybody at the University has been helping out (Brooks Reid and Michael Santana have also been subbing in my other courses) in ways big and small.
So teaching 115 that day for the last time felt like a relief, and the drive to LA went OK. The first day of the treatment wasn't too bad, but soon enough the problems started: nausea, pain and constipation. Things got gradually worse, until the weekend physician, Dr. Natale, prescribed a Fentanyl patch for the pain (rather than the oral medicine she had been getting before): the patch meant no more juggling pain meds against nausea, and her pain has been mostly under control since then. After 6 days (Tuesday-Saturday) she finally had a bowel movement again (the MiraLax suggested by the pain doctor, Dr. Wolcott, helped) and that took care of one part of the pain. Not having to take so many pills any more helped the stomach as well, and the constipation hasn’t been a problem since then.
IFEX works by constant Infusion (20 hours per day) and that part was OK for the first 2-3 days, but then it got increasingly harder: she had a lot of nausea over the weekend, and she got increasingly weaker. On Monday she got her last IFEX pump, but getting her into the hospital was more and more of a challenge. On Tuesday, when we went to return the IFEX pump I didn’t think about getting her a wheelchair to the curb, but instead she almost collapsed on me in the lobby. Thank god that the receptionists at Cedar Sinai are really nice and brought out a chair for her. I thought that just the thought of getting rid of the pump and the accompanying humming noise would make things easier for her. But the Mesna rescue drug she got that day just weakened her more, and that night we slept no more than 2 hours at a stretch. Wednesday she went to get more hydration and a scheduled shot to boost her blood count, she could barely walk, but that’s what wheelchairs are for. They gave her an IV with Reglan and Benedryl to combat the nausea and she also has been taking Ativan under the tongue for break through nausea, and that did the trick to get her home on Wednesday. She was so eager to get out, and just the fact of being on the road home gave some relief to both of us. Radhika also has two nausea patches: one that replaced the Zofran, a strong oral antinausea drug, and the other one behind the ear that deals with a motion sickness nausea she has developed (whenever she got up or turned in bed she got seasick.) We still don’t really know why Radhika has THAT much nausea (MTX and IFEX are not “supposed to do that”), and the only thing we have heard is that young women typically experience more nausea, especially if they had problems with morning sickness, like Radhika did with Mira. Of course Treigh had no such problems, so we hope that things will get better for Radhika.
Being home has been a relief (Ranjeeta had made some Indian comfort food for Radhika, rice with daal), with the only sad part being that my sister Hannah had to go back to Germany yesterday (Thursday). Hannah still did all our laundry on Wednesday night, I really couldn’t ask for a better sister, especially with the way she looked after Mira during Mira’s Spring Break. Radhika’s healer friend Ruth did a Reiki/massage session with her Wednesday night, so despite our crummy bed (we really need a better one), Radhika slept reasonably well that night. Yesterday Janet McDaniel (thanks again for the lemon and the roses) drove Hannah to the airport, Mira spent the day with her friend Emily, and Marcia (god bless her soul!) spent the day with Radhika so I could go to campus to teach my classes and catch up with some other school work. Marcia said that she had an OK day taking care of Radhika, but I think it takes somebody who has had to deal with cancer before, to be ready for the nausea, depression, and fatigue that Radhika is going through. Thank god the nurses and doctors all said that after a few days these side effects of the chemo will improve, so next week should be a lot better. She is currently getting a home nurse (Patricia from Coram health services) to take her lab work and give her hydration, and not having to go anywhere for the next few days should help too.
Another item worth reporting is that Leticia has come through wonderfully and found us a beautiful, well maintained 1 bedroom apartment on 5669 San Vicente Boulevard, a mere 5-10 minutes (depending on the lights) from Cedars. Radhika and I already looked around in the neighborhood, and the area has good energy. The apartment has a garage, ceiling fans, AC, hardwood floors, and a balcony, for $1425 a month. We already put a deposit down and the lease will start on the 15th. Thanks also to Vivienne Bennett (who will help Leticia getting the apartment furnished), to Leticia’s husband Kent who drove around with her to look at places, and to the wonderful people at Loyola Marymount who got Leticia in touch with the realtor Julia Kuleck (the wife of the Associate Dean of graduate studies in the College of Science and Engineering at LMU) who was the one to make the contact with the landlord (who seems very nice as well) and helped Leticia negotiate an 8 month lease, instead of the usual 12 months. Thanks also to the people at the Vedanta Society in Hollywood, who gave us a home for these past 3 rounds.
Looking ahead we are glad that Radhika’s friends Latha (4/17-4/24) and Kali (4/23-4/30) will be able to come and spend a week to help Radhika and me cope around the house and with everything else that is going on. After that her cousin Radhu will stay a week, followed by Anurag, and this should be able to get me to the end of the semester without going crazy. Once that is all over we will have a much clearer idea of how the summer will go (especially after Mira’s school gets over.)
As far as Radhika’s treatment goes, they are checking her blood values twice a week, because with IFEX one expects a drop in white blood cells about a week after the treatment, which should then recover in another week or so. Her next round will start on a Wednesday (either 4/20 or 4/27) and it will be a short round (2-3 days) of either Methotrexate (if all goes well) or Adriamycin. The issue is the fluid in her lungs: even though they did not find high values of MTX in the 350 ml they removed the week after round 1, Dr. Forscher is concerned that this could happen next time. MTX is given in very high dose and it is important that its levels go down exponentially fast after the first day; if the MTX builds up somewhere and then seeps back slowly into the body, this could be dangerous. So the plan is for Radhika to get a chest x-ray on 4/19 and if there is no fluid in the lungs, then MTX should be safe; otherwise she would receive ADR (which is the harsher of the two drugs, because it can affect the heart.)
Thanks again to all of you who are sending love, help and prayers our way on this journey!
Marcia, the Cat Lady
Radhika made me write that title. She wants you to know:
I'm back now, but was at Cedars for 10 days and took the Ifosfamide treatment - the worst of all the treatments. It's the longest. I have to wear a fanny pack for seven days and it makes me feel tired and sick. I got home Wednesday evening. I plan to feel better tomorrow after having some IV liquids.
I'm sorry to have missed the colloquium, and I miss everybody. I thought blogging would be a good idea, but that was when I was feeling well. I may not be able to blog regularly but I will try to now and then with help. All of our energy is being directed to healing.
Andre will try to post something soon about the treatment.
Thank you for all the presents and good wishes and food. We love you all. Keep us in your thoughts.
I'm back now, but was at Cedars for 10 days and took the Ifosfamide treatment - the worst of all the treatments. It's the longest. I have to wear a fanny pack for seven days and it makes me feel tired and sick. I got home Wednesday evening. I plan to feel better tomorrow after having some IV liquids.
I'm sorry to have missed the colloquium, and I miss everybody. I thought blogging would be a good idea, but that was when I was feeling well. I may not be able to blog regularly but I will try to now and then with help. All of our energy is being directed to healing.
Andre will try to post something soon about the treatment.
Thank you for all the presents and good wishes and food. We love you all. Keep us in your thoughts.
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