Sunday, December 25, 2011
The week before Christmas was not a good experience for us, but it is behind us now, so I can finally chronicle it and get it out without feeling like I am spoiling the holidays.
On Friday 12/16 Bob helped me get our VW in for an oil change while Radhika was in full recovery mode from the MTX 12 round we got back from the previous day. She visited Jen for the pain in her back, and Christine for acupuncture, but she felt down. How she reacts to having people around her is somewhat unpredictable these days, but seeing Stephen for dinner that evening cheered her up. During the night however the pain got worse, and she was feeling it in her chest and arm again, so that I got worried that something else might be wrong. Saturday morning Mira and I put up our Christmas tree and then went to her Gymnastics for the last time before they closed for the year. When Radhika hadn’t improved much I called Cedars around 3PM. Unfortunately the nurse Anita was not terribly helpful other than insisting that with chest pain one should go to the ER, and even if we were at Cedars she'd send Radhika there. This was something we didn’t want to do since we had visions of people in agony and horrendous wait times. We also called the CORAM nurse, and Jen, and they all said to go to the ER and that with chest and arm pain the wait wouldn’t be so long. With that assurance and Mira playing with Jacquelina next door, we got to the ER of Palomar medical center in Escondido around 4:45PM. The paperwork and triage went very quickly and since Radhika is immune compromised they immediately pulled her from the main waiting room to a quieter room, and within half an hour she had her own room and they started their tests. An EKG came back fine, and a chest x-ray did not show any heart problems either, but it showed water in her lungs. The physician was very attentive and discussed the results with us pretty much right away. We could have in fact been out before 7PM, but he had also ordered another ultrasound of the pic line since Radhika thought that that could be the cause of the pain. That department was just going through their shift change, and there was one more patient ahead of us, but by 8:30 she was discharged, since the test came back without detecting any problems. Since there was no imminent danger they let us go with a prescription of percoset to help with the pain. After a eating dinner at Rubios and filling the prescription in Escondido we went home to sleep. Mira was spending the night at Ranjeeta’s since we didn’t want to burden Joe and Julie with a 3rd child for the night.
Sunday 12/18 was overall a better day. Due to the percoset, Radhika had a better night and Mira came back home in good spirits as well. We had Papa John’s pizza for lunch and then went to Encinitas where Radhika had a colonic that went well and Mira and I played a card game in the Darshan bakery next doors. After that she even had the energy for a bit of Christmas shopping, and then she craved China wokery’s Buddha’s feast for dinner, so to Mira’s delight we did take out again. Our friend Ruth spent the evening with us helping me with the laundry and giving Radhika some Reiki.
We were only scheduled to go to Cedars on Tuesday, but since Radhika had another night with more pain than sleep, I called Susan at 9AM on Monday morning to tell her what happened over the weekend and that we were planning to come to LA a day early in hopes that they could move one of the tests up, especially that MRI that I just found out was scheduled for 5PM on Friday. So at 10AM I dropped off Mira with Julie at Sunset Park, and then at noon she went from Julie’s house to spend the next few days with Bianca and Matthew. We left after lunch and got to Cedars at 2:45PM and by 4PM her chest CT was already over. We met with Forscher who confirmed that there was fluid in the lungs, and that Radhika was going to have it removed via Thoracentesis the next morning for further testing. Among other things he was concerned that the fluid could serve as a reservoir and MTX could still be leaching into her body from there, a worry we found 2 days later to be unfounded. This did not worry us a lot, since we had been expecting it and she already went through one of these in March without any problems. He also told us that the cancer was unchanged or shrinking in all locations that had had tumor on previous scans, which was certainly good news. The bad news was that there is new Osteosarcoma growth at the top of her left lung, near her heart, in a region that was previously clear, and that this was the likely cause of her chest pain. We were dumbfounded, but decided to take things one step at a time, which meant that she had some blood drawn for the Thoracentesis at 5PM, then we went to have some good Brazilian barbecue for dinner at the rather frigid Farmers market on Fairfax. From there we went to our apartment, called Mira at 7PM and started watching a fun movie called “Galaxy Quest” on DVD. We were exhausted and in bed by 8:45PM, but by 3:45AM Radhika was awake again and in pain. We tried several things, but what finally helped was watching some more DVD and we were able to sleep again from 6-8AM.
Tuesday 12/20 we got to Cedar's Imaging center at 9:45AM to check in for the 10AM Thoracentesis, but by 10:15 it turned out that the wrong labs were taken the previous evening. So we went back to the cancer center to take the right labs, since they get things done a lot more quickly than the imaging center. By 11:30 she had her bed in the imaging center observation room, and was told that they would do the procedure right after lunch at 1PM. We watched the old Schwarzenegger movie “Kindergarden cop” while we were waiting. The doctor was pretty busy and we probably only got this scheduled that day thanks to Dr. Forscher arranging it. Nevertheless the wait was worth it, and at 2:30PM they removed 300ml of a reddish fluid in a 5 minute procedure. Even though the fluid didn’t look nice we found out 2 days later that there were no malignant cells in it. Interestingly, as opposed to March I was allowed to stay for the procedure this time. The lab tech said that they primarily send care givers out because they don’t want them to pass out (something that apparently happens much more often with male care givers) and then hit their head as they go down, which happens often when people pass out, and have to go to the ER. I guess I must have been more calm and seasoned now than I was in March when things were definitely much more desperate, even with the news from the Chest CT. After the procedure Radhika spent some time in the recovery room, where they took a chest x-ray to confirm that the procedure was a success, and by 3:30PM Radhika was discharged from the imaging center. Thankfully the imaging and cancer centers are right next to each other, because next we went back there and by 4PM a nurse had removed Radhika’s pic line. It was a triumphant feeling for her that after 9 months of chemo she didn’t have the line anymore. All in all Tuesday was a positive day, and we went for dinner at Maggiano’s Italian restaurant near the farmer’s market from 5-6PM. At 7:30PM we were in bed and slept with several interruptions until 7AM the next morning.
Wednesday 12/21 I called Cedars imaging as soon as they opened at 8AM to see if they had any openings to reschedule the MRI from Friday, and we got lucky that indeed they had an opening at 3:30PM. Unfortunately this still meant that we wouldn’t be able to discuss the results with Forscher in person that day, but at least it gave us the possibility of driving home right afterwards and not having to come back for more tests. Unfortunately by that time the Percoset had started causing constipation in Radhika again, a problem we had hoped to leave behind, so that I called Dona to confirm a colonic for Radhika the next day and I also went to a pharmacy to buy a Fleet Enema for relief. Even though this wasn’t easy for Radhika, she also decided to go back on the Fentanyl pain patch for the first time since July in order to minimize the need for pain pills. I spent the morning being with Radhika, making phone calls and doing some packing and clean up, but everything went slowly. After lunch I started loading the car from the apartment for the last time, as we had decided to vacate that day. Everything went smoothly and we were able to check in for her MRI right at 3:30PM. The MRI itself was a hellish experience, but not as bad as the one in March when she was in so much pain that she couldn’t take it at all. This MRI was a 4-part scan of the upper, lower and middle back in that order, and it required her to lie still for about an hour while the machine was droning in her ears and making her sweat. Halfway through the upper back she said already that she was in too much pain to continue, but the tech made it more bearable by playing music and allowing me to hold her feet. After the upper she said that she’d also take the lower, but I didn’t think that she would be able to do the middle as well, as it was the longest. I really don’t know how she made it through that, but I felt a great sense of relief that we were able to go home right afterwards. We left Cedars at 6:30PM and stopped halfway home to meet Leticia and Kent and give them the key for the apartment, so that they could go there the next day to clean up, have the furniture picked up by the rental agency, and return the key to our landlord. I think they were a bit shocked to see the state Radhika was in after the MRI, and I felt bad for that after all they had done for us. We reached home by 9PM, and by 10:30 I had finally wound myself down enough to be able to sleep. By 2AM her pain woke both of us up again, and from 3-4AM we were watching an Eddie Izzard DVD before sleeping again until 6AM.
Thursday 11/22 found us waking up in our own beds again, sort of beaten up, but relieved. At 8AM we called Susan and she helped us fine tune Radhika’s meds: instead of 1 Ambien at night (which knocks her out and makes her woozy), she is to take only 1/2 to help her sleep through the night, and we also increased the Lexapro from 1.5 to 2 per day to help combat the depression. Most importantly she told us that the 12mcg/hr of Fentanyl in one of the patches we still had from July was really a baby dose and that 50 was a normal starting dose for cancer patients with some patients on as much as 200mcg. We promptly gave her another patch in the morning, and one more in the evening, and as of today she typically has 4 of them on at a time to get her to the 50mcg she seems to need. Susan also told us that the hemoglobin count was only 8.1 on Monday and that she should do again what she did last time to up her blood values. At 10AM we talked to Forscher on the phone and among other things he told us that he wasn’t concerned about us going to Hawaii the first week of January, as long as everything was under control, most importantly he wants another chest x-ray before we go to make sure the lungs are still clear. At 10:30AM Bianca dropped off Mira from her 3 night sleep over, and as usual we felt grateful for one of our friends coming to our rescue again. On some level this whole process would be easier if we didn’t have a child, but the joy we feel when we see her again more than makes up for it, and she really gives Radhika something to live for when pain or depression trouble her. At 11:30 I dropped Mira off for a play date with her best friend from school, Cassidy, which enabled us to go to Encinitas for a colonic Radhika really needed, as well as some Christmas shopping at Gepetto’s. We also bought a good beef dish from Jimbo’s to bring up her blood values, as Susan had suggested. At 8:30PM we were all in bed again. In fact all 3 of us are typically in bed at that time these days, and our main problem is that Radhika and I often wake up 2 times a night and have a hard time falling asleep again. Radhika’s pain is fairly under control during the day (even though she may tire easily), but at night she can sometimes not find a comfortable position to sleep in.
Friday 11/23 started in a good way: the CORAM nurse came at 9AM to take her blood, and by the 10AM we already knew that her hemoglobin had improved from 8.1 to 9.5 (presumably thanks to Brazilian Barbecue, Maggiano's veal and Jimbo's beef) and that in fact all her other blood values her fine as well. To me this came as a great relief, since I had actually thought that as exhausted as she was, a transfusion would be unavoidable. Mira spent until 3PM with Cassidy again, after which time Ranjeeta picked her up. Radhika went to acupuncture and after that we did a bit more Christmas shopping. Ranjeeta then came over to our place with Mira and a dinner. Ranjeeta is a real saint: with all the last minute requests we have due to Radhika’s constantly changing condition, I am sometimes worried that she will get tired of being there for us, but if she ever gets exasperated she sure doesn’t show it!
The story of the last 2 days is simple: we have tried to enjoy the blessings of the Christmas season and to regain our optimism for the coming weeks. Radhika’s energy comes and goes, and because of the rotten nights she tires quickly, but she is typically in a good mood. Fortunately we already built the Christmas tree last weekend, and Radhika had made sure that there were enough Christmas presents under it for Mira to open on Saturday night. Mira and I also built the Ginger bread house from a Trader Joe’s kit, like every year. We did a bit of walking and visited some friends.
Our plans looking forward haven’t changed much: we are still thinking about Kauai for the first week of January (if her tests come out well) and then second opinions from NYU and MD Anderson, as well as potentially a chemosensitivity test from Tgen in Arizona, and maybe looking into alternative methods again. In the mean time we will definitely continue the acupuncture and colonics. We will use this blog to keep you all posted as we are making the next decisions, but if you don’t hear from us in the coming week or two you can look at this as a good sign, in that we must have gone to Hawaii :)
I hope you’ve all had a good Christmas and are enjoying a relaxing break. I’ve delayed writing and posting this entry because my news is not all good and Andre and I didn’t want to spoil the season. So, you are forewarned – if you are sick and tired of my journey and find that the scenery is not improving fast enough to warrant continuing on with me, then, stop reading. I would not blame you in the least – how I wish I had that option!
These past two weeks have been exhausting. Ever since my parents left, I’ve been plunged into a depression so deep that it has sucked everything out of me. I barely acknowledged the many loving greetings you all sent me for my birthday, I’ve ignored e-mail, and not wanted to talk to anybody. Right after Halloween, I came down with a flu. My coughing fits, that were already a pain, worsened, and then my back started hurting, mostly on the left side. Andre said it was probably due to my pulling some muscles while coughing, but my left shoulder blade kept hurting and the pain persisted even after the cough went away.
Then something happened to freak me out completely – I felt numb beneath my left elbow and on my left abdomen. I called Susan, she assured me that it was unlikely that it was the tumor, that it was likely to be the pic line or some peripheral numbness due to the tight muscles in my back. As Andre recorded, we saw Jenn and Chip, and they thought so too. Still, I felt uneasy. The pain brought back memories of last year, at exactly the same time, when my right arm started hurting. When we went for the Adriamycin round, I told Forscher about the pain and he had a Doppler done to check the pic line, but that showed no trouble. When we showed up for MTX three weeks later and I told him that I had had my back adjusted by an osteopath and it had relieved some of the pain but my shoulder was still hurting and the numbness was still there, he said little but he was concerned. He ordered a CT-scan of the chest and MRIs of the spine, and agreed that we would end the regimen before Christmas. This was last week, the 12th or 13th – it seems like an age has passed since then. Andre and I told him about our plans to go to Hawaii for New Year’s Eve. I said that I felt tired, that my body needed a break from the chemo and I just wanted to be in a different place for the New Year. He was really supportive. He said he understood and thought it would be fine and that I should come back the next week for the scans and to have the pic line removed. We drove back on the 15th rejoicing that the line would soon be out and perhaps with its departure, the pain would go away.
On Friday, the pain increased and on Saturday morning, I woke up with my left chest and armpit feeling sore and hurting. By afternoon, nothing had improved, so Andre called Cedars and they recommended that we go to the ER. I was terrified of having a Scripps experience again, so for a while we debated if we should just drive up to LA, but the nurse was against it, and finally, we left Mira with our neighbors and went to Palomar-Pomerado.
Fortunately, our experience was good. They took me in fairly quickly and got me to a room. The doctor came and suggested I took percosett against the pain. I was in such agony at this point that he suggested I took 2 of them and I gulped them down. It took a half hour but the pain eased slightly, enough that I could go to get an ultra sound of the pic line done, which revealed no problems with the line. Then, they did an X-ray of the chest, and we discovered that there was fluid in my lungs. The doctor said that it was likely the cause of some of the pain and that we should contact the doctor at Cedars and get it drained. We came home, partially relieved and Andre dug out our arsenal of pain killers and asked me to just take something. I tried but nothing helped – the déjà vu was so awful. I cried in pain through the night, dreading what this repeat of last year’s experiences could mean.
Monday morning, Andre was on the phone with Susan, and they told him to drive up with me and they would fit us in for a CT-scan immediately and set up a Thoracentesis for Tuesday to drain the fluid. We drove up to Cedars at 2, had the CT-scan and then went to Forscher’s office to await the results. He came in with Susan, pulled the scans up on the computer – one from March, one from October, and the one from the day. As he went over them, I could feel the tension rise in my body. I hate looking at those scans – my beautiful lungs covered with white spots.
“These regions have calcified, as we saw in March and October, and some of them have gotten stable or smaller, even,” he said, “but let me show you what concerns me.” And he pulled a view of the chest in all 3 scans and said, “This is a new area that wasn’t there before. I believe it’s new tumor growth around the heart.”
I sat there frozen, thinking maybe he didn’t say that. Maybe it’s a mistake. Maybe if I ignore it, we can pretend it’s all better. But Andre is made of sterner stuff and asked, “How is that possible?”
“It’s unusual,” said Forscher, “but it can happen that most of the tumor responds to chemotherapy but some part is resistant, and I’m afraid this might be like that.”
Andre started arguing with him, trying to understand. I didn’t bother. All I could feel was, “I’ve failed. It didn’t work. I worked so hard, endured so much and it doesn’t matter.”
After a few moments, Forscher said he wanted to check something with the radiologist because he hadn’t really been able to talk to him before, so he and Susan left the room. Perhaps he wanted to give us some moments alone. Andre and I just sat there at opposite ends of the room, not moving, not speaking. The voices in my head were all talking – “It’s come back. No, it can’t have. It’s probably a mistake. Oh no, after all this, I am going to die anyway.” And then I looked across to Andre and thought about how hopeful we were that 2012 would be a better year. How we had hugged each other in relief at the thought that 2011 was soon going to be over, and whatever 2012 had to hold had to be better. “Not anymore,” I thought.
I felt sorry for myself and then, as I looked at Andre, my heart hurt. Did he really have to endure more? And my poor child; she had thought it would all be over. We had all pulled together, gritting our teeth, with the thought that December would bring an end and hope. Now hope was crushed.
Still, Andre and I were quiet, unable to speak. Trying to distract myself from self pity, I watched him sitting in his corner of the room, and slowly I realized, he was angry. I could feel the fury inside him, in the tightness of his jaw and the hardness of his face. He is such a calm person, he rarely gets angry. I laughed to myself, thinking about how he has often said that I’m one of the few people who can push his buttons enough to get him mad. He caught me looking at him and finally spoke.
“I hate those bastards at Scripps,” he said.
I shrugged. What did it matter now? Tears came in my eyes. “Don’t give up hope,” he said, “we still don’t have all the information. Let’s wait and see what Forscher has to say.” So, we continued to sit at our ends of the room, plunged in our dismal thoughts.
And now that Death was in the room again, so close to me, I thought about all the times I called to it and longed for it, and felt ashamed. How many times had I insulted my dear husband’s hard work in protecting me and caring for me, calling to die, like a petulant child. And now, I wanted to live.
“I’m sorry,” I said to him, “I’m sorry about all the times I’ve hurt you by saying I want to die when you were doing your best to help me. I never wanted to hurt you, I’m really sorry.”
He looked at me, and then got up and came to my chair to hug me.
“I understand,” he said, “I know that it’s only because you see death as a way to escape the pain. And we have to work on that because there has to be another way of relieving your pain. So, don’t worry about me, I understand.”
And then I was crying, holding him close, feeling so blessed to have a friend like him. And I felt that I couldn’t give up, for his sake, I had to fight.
So, dear friends, now you know our news. There is more to tell you, of course. Things are not completely dire. Forscher thinks that there are some options available, and one of us will blog next about that. Writing this has been difficult because I am in pain and it seems to escalate as I relive those days. So, I need to take a break now.
My dosage of Lexapro has been increased to 20 mg. Whether it’s that or my sheer perversity, I’ve decided not to give up, though this pain cripples that resolution often enough. For now, the chemo is over. The thoracentesis went well and the fluid is out of my lungs, the pic line is out of my arm, and I just spent 4 wonderful days with my beautiful, uplifting daughter, enjoying the gorgeous weather at home.
On Wednesday, my brother was the only other person who knew what we were facing. Then, on our way home, we saw Leticia and Kent, and unable to bear the burden, I told her the news. I will never forget the way she held me close in her arms, mixing her tears with mine. In that one moment, she opened her heart and gave me so much love and compassion, it was blessed to just stand there and receive it. As we drove back, I told Andre of the sense of relief telling her gave me. And then I realized why I started the blog. Because, dear friends, I need you. I need that love, that compassion, that kindness that you have already showered on me. How I would love to tell you that this journey is over now, that all is well. But it is not so.
Will you walk a little longer with me?
Friday, December 16, 2011
We just got back from MTX 12 in Los Angeles yesterday, and it is time for another update. It has been a rough 3 weeks since my last entry, with Radhika primarily in recovery mode. The plan to have MTX 12 on 11/30 was overly optimistic and it was good that we waited 2 more weeks, because the extra time gave her body (assisted by colonics with Dona and acupuncture with Christine twice a week) more time to recover and so the round went quite well.
The week from 11/20-11/26 was challenging. Mira was home with us except for spending all of Wednesday with Kim, Pedro, Penelope and Helena (coming home with a beautiful pot with a cactus landscape in it) and Saturday after gymnastics and library she enjoyed the rest of the day with Bianca, Matthew, Pablo and Sinqi. Both days Radhika and I went to Encinitas (for acupuncture and colonic respectively), so that at the end of the day all 3 of us felt better. Thanksgiving this year, 11/24, was a day we will definitely remember, because we spent most of it feeling miserable before a decidedly happy ending: Mira was sad that we weren’t able to go to Janet’s party (or anywhere else for that matter) and Radhika had stomach pain, fatigue, back pain and an unpredictable appetite. I felt somewhat drained and helpless with Radhika’s condition, the lack of food in the house, and my own inadequacy as a cook -- I am SO thankful that the meals have started coming again! So I did the thing we keep learning over and over again during this trying time: I reached out to a friend, by calling Bianca, and it turned out they had quite a bit of leftovers, so Mira and I went to her house to pick it up.
We had barely set the table at home when the door bell rang and Laurie brought the food from Janet’s party, some of it especially prepared for Radhika. In the span of 30 minutes our table had gone from bare to overflowing with so many delicious things that we didn’t even know what to eat and we had enough for the next 4-5 days. So we spent our Thanksgiving dinner feeling very thankful for our wonderful friends. Radhika also felt a little better on Friday, so I was able to leave the two of them at home and got myself a massage in Encinitas.
The week from 11/27-12/3 started off well in that Mira and I spent Sunday in Legoland before she had to go back to school the next day. Monday was acupuncture and we took it easy that day. Tuesday morning 11/29 it felt like a relief to call Cedars and reschedule MTX 12 from 11/30 to 12/6, but unfortunately things took a turn for the worse from there. The CORAM home health nurse who came that day already said that she felt that Radhika seemed a bit anemic, and her back continued troubling her to the point that even a massage from her friend Ruth only provided temporary relief. On Wednesday our house keeper came, and just picking up the house to get it ready for her completely wiped Radhika out. Of course some amount of this was to be expected, since 7-14 days after Adria her blood values (especially the white count) were expected to drop. When I called the lab for her test results I was still taken aback, that even though her white’s were still reasonably high, her hemoglobin count was only 7.9. That’s a value when they typically start talking transfusion. However, Radhika was in no mood to go for a transfusion, so when we talked to Susan she agreed that we’d monitor the situation and take a test again first thing Thursday morning. After the CORAM nurse came to take the test, I spent the rest of the morning trying to figure out the logistics of a transfusion should it become necessary. Radhika was also not doing very well that day, so when we got the result back and it was 8.7 both Susan and I were surprised: apparently the burger she had Wednesday night really made a difference. In retrospect I think that her low hemoglobin was probably more due to the heavy bleeding she had during her unexpected period, and it would have been good if we had already given her a burger on Sunday evening when she first craved one. Unfortunately her troubles continued: Thursday for lunch she thought she’d do herself something good by having a spinach naan, since after all spinach is full of iron. The naan tasted good, but it must have had a spice in it that didn’t agree with her that day, probably ground pepper, and she soon started retching. At night I got worried about how she was doing and called the Infusion center, where doctor Forscher happened to be on call. He reassured us via Cindi, one of our favorite nurses there, that since her blood values were fine he saw no reason for a transfusion, and she should just take Ativan (to fight the nausea) and Advil (to fight the head ache that came from all the retching) and monitor the situation.
Over the weekend 12/3-4 her stomach ache slowly improved, so that she could finally start eating decent food again. Unfortunately her depression got worse that weekend, probably related to the fact that because of her backache she had a hard time sleeping at night, and so that Sunday we increased her dose of Lexapro from 10 to 15mg. We had hoped that as she started eating more her fatigue would lift and she could move around more and that would help her back, but unfortunately her back pain and the fatigue continued so we again had to reschedule MTX 12, from 12/6 to 12/13. Her hemoglobin that Tuesday was 9.2, so at least in that matter things were returning to normal. Unfortunately her back continued to bother, and if anything it kept getting worse, so that on Thursday 12/8 we went to see Jennifer for a physiotherapy session: as expected she found many pressure points in the back and gave Radhika some exercises for the main problem spot, but reiterated again that this seemed more likely to be due to stress and lack of some electrolytes, than due to any tumor. The exercises gave Radhika some temporary relief, just like the massages, but when things didn’t really improve over the weekend we took Christine’s advice and saw an osteopath/chiropractor on Monday 12/12. Dr. Pearson is a funny guy who specializes in sports and family medicine right in San Marcos, and among other things assists the CSUSM athletics program. He adjusted Radhika’s spine, and later that day Christine gave Radhika a foot detox and an acupuncture session. On 12/13 Radhika felt much better and we decided to drive to Cedars for MTX 12, after dropping Mira off at school.
We started our trip to Cedars with a burger lunch from Five Guys to fill our stomachs and boost our blood counts. The drive itself was very smooth, especially since the sun came out as we drove north. To our relief, her blood tests at Cedars came back even better than the week before, and so she could get the chemo. Before the pre-drugs knocked her out at 5:30PM we had a long conversation with Forscher about taking a break from the chemo therapy for a month or so after this round. The next day she slept until 10:30AM ( so that is what, a 17 hour nap?) except for when I woke her up to drive back to our apartment around 10:30PM and then again at 6AM for the bicarb and Allopurinol. Fortunately her back felt a lot better after all this sleep, and we hope that it won’t go back to how bad it was. Forscher is a bit concerned about her back and suggested taking Ativan as needed, since it is a muscle relaxant, and then to reassess when Radhika has her next scan. After a leisurely morning we drove to Cedars for the blood test at 1PM and we had a nice conversation with Susan about our next steps as well. When we got home again around 2PM I hooked Radhika up to 2000ml of hydration and she went to sleep again until 6PM. Then she had scrambled egg for dinner and we went for a walk, after which she slept again from 8PM until 8AM with the usual interruptions at midnight and 6AM. Thursday morning was uneventful, with Radhika only having minor discomfort, so we got to Cedars by 11:15 for MTX level testing, and by 1:40 we were back in San Marcos, having lunch at Odyssey. At 5PM I picked Mira up from KOC, and we spent a quiet evening together; thanks at this stage also to Juliana and Michael for having Mira at their house these past 2 days
Looking forward, next week Tuesday 12/20 we will drive back to Cedars for a CT scan and MRI, and if Radhika feels good enough (which seems unlikely at this stage) then she will also have a round of MTX from 12/20 until 12/22. After that Radhika will get her pick line removed, because we want to fly to Kauai for the first week of January to start the New Year on a good note. The line has been bothering her for a while and we also don’t want to have to worry about dressing changes, sand or water while we are in Hawaii. Radhika, Mira and I had a very trying 2011 and we are really looking forward to this! Another change for 2012 will be that we won’t have the apartment any more. We believe that we will spend much less time in LA, and since Radhika is doing better we really won’t need it anymore, even when we are in LA. Besides for $1450 a month one can get a nice hotel room when needed. As a consequence I may also drive up to LA one day in the last week of December to hand over the keys and such.
What exactly happens in January will partially depend on the outcome of the scans next week, but right now we are thinking that with the standard regimen being over at that time, we will want to reassess the situation and get some second opinions sometime in the second or third week of January, since my first day of teaching at CSUSM will be 1/21. Right now we are considering MD Anderson in Texas (since they are the leading cancer center in the US) and Dr. Gerald Rosen at NYU. Rosen comes highly recommended from Forscher and Susan, since he is their mentor and he pioneered the use of chemo therapy for Osteosarcoma. In their words, nobody knows more about Osteosarcoma than Rosen, and before he developed the current regimen, Osteosarcoma was considered untreatable. Radhika and I are definitely interested in meeting the man who was instrumental in saving her life, and hearing what he suggests. My feeling is that we will probably visit New York as well as Austin, preferably in one trip. I hope we can get all that scheduled (we still need the tickets for Kauai too), so any helpful suggestions by our friends will be appreciated!
Thursday, November 24, 2011
Radhika and I returned from her last round of Adriamycin last Thursday (11/17) night and I realized that it has been over a month since I wrote my message to fill you in on the events surrounding Ifosfamide. Since then Radhika wrote about the round MTX 10 and the scans and emotions that went along with that (10/10-12). I have been silent so long, since with Radhika’s parents in town I had some time to unwind and take it easy with my responsibilities. Just the fact that Hema took care of the cooking, cleaning and laundry was really nice. Also Radhika had a good time talking with them and the energy around the house was positive. It was a marked contrast to Radhika’s surgeries 5 years ago, because when they visited at that time, the atmosphere was a lot tenser. I think we have all mellowed since then, and they were wonderfully supportive without being suffocating. That must be pretty tough when your daughter goes through an ordeal like this. I really appreciate them for all they did, especially taking good care of Mira while we were at Cedars for MTX 10 and 11. I also appreciate all our wonderful friends at the University, and I want you all to know that Radhika has enough CATASTROPHIC LEAVE donations to last her through the rest of the semester. Gabriel from HR is currently looking into what Radhika’s options are for the Spring semester, but all that can wait for another month.
So what did I do in that time other than driving Radhika to her various appointments? I spent quite a bit of time playing online Fantasy role playing games, sometimes with Mira, but more often alone. It really took my mind off of things, so my stress levels decreased and my back stopped troubling me for a while there. I feel in better shape again physically to deal with things, and I am even able to volunteer in Mira’s school once a week. We also continued our home improvements: we bought a new couch, a new vacuum cleaner, and we got nice blinds to complete the look for the living room. Other than coffee and end tables the living room is now pretty much done, and we are happy that Radhika’s parents got to see it before they left. We still need to hang up some pictures around the house, and then it will be on to our last major project: the kitchen. Radhika has some ideas for it already, but we just ran out of steam for a while. Knowing her we will be onto that one again soon.
Now just to fill in some details since Radhika’s 10/12 post. MTX 11 (10/24-26) was not quite as good as MTX 10, as Radhika was a bit more troubled by nausea and constipation. I think this is largely due to the fact that she didn’t get a colonic right before and undoubtedly we were still mulling over the results of the scan. After MTX 11 things got very busy: on Thursday 10/28 Radhika’s sister-in-law Sangeeta arrived from a meeting in LA and we all went to the San Diego airport to pick up her daughter Dipali, who is a senior in high school and we had dinner in the gaslamp. Sangeeta and Dipali then went to pick up Radhika’s brother Mukund from the airport, whereas the rest of us went to bed. Friday Mira went to school, while the rest of us spent the afternoon in Encinitas. Mira had a great weekend with her family: Friday afternoon Mira, Mukund, Sangeeta, Dipali and I went to her schools Halloween party, and in the evening Radhika’s cousin Navaneeth arrived from Toledo. Saturday started out with a nice brunch at our house followed by Mira’s last soccer game and the after game party (we skipped Gymnastics), followed by Ranjeeta’s Diwali party. On Sunday, Navaneeth, Mukund, Sangeeta, and Dipali all left for Ohio again. Unfortunately Radhika, Ram and Mira, came down with a cold with fever that day. Even though Mira is resilient it took her almost 2 weeks to fully recover, and I was quite concerned about Radhika and Ram. Ram recovered well enough that he and Hema wanted to fly back to India on that Thursday 11/3 as scheduled. Building up to that we decided to take it easy, except for some low stress Halloween activities with our neighbors Joe and Julie. Mira, Radhika and Ram did pumpkin carving at their house on Sunday, and on Monday Radhika, Mira and I had dinner with them and their friends, after which Julie and I took Mira and Jacquelina trick or treating in the neighborhood, while Radhika and her parents stayed home to hand out candy. Monday morning Janet McDaniel also stopped by to reveal her identity as the birthday greeting instigator, and we shared several good laughs. The next 2 days where spent resting until on Thursday Radhika and I drove her parents to LA airport. They arrived in India in good condition and from what I heard Ram has since fully recovered as well.
The day after Radhika’s parents left the weather turned really miserable for a week, after having regaled us and our guests with mostly good weather the week before. Radhika was scheduled to start her big round of Adriamycin on Monday 11/7, but in the shape she was in that was not really an option, so that we rescheduled it for Tuesday 11/15. Her infection turned out to be quite persistent, and her fever consistently spiked up to 101F (indicating that this was viral, and not bacterial) as late as the 13th, so I was worried that we needed to reschedule again. But Radhika was determined to get it done and fortunately her fever has disappeared since then. One problem was that Radhika’s back muscles (especially shoulder and left side) have really tightened up pretty badly since her parents left, despite her getting several massages from her friend Ruth. The week before Adriamycin the pain was also radiating down into her left arm, and that freaked both of us out since the cancer started rearing its ugly head last year through nerve pain in her right arm. However, when I called the Cedars Infusion center on Friday 11/11 to get instructions about the fever they reassured me that it was unlikely that this pain was caused by a tumor at this stage. Nevertheless, we made an appointment with our friend Jennifer for Monday 11/14 late afternoon, at which it turned out we finally also met her orthopedic surgeon friend Chip who had set us up with the Mayo Clinic and helped us through the emotionally tense early stages until we settled on the treatment at Cedars. They both examined Radhika thoroughly and agreed with Cedars that it is unlikely to be cancer at this stage (which is what her acupuncturist Christine also said), but that she had tight spots all over her back. Monday 11/14 also saw parent-teacher conferences at Mira’s school, so in the morning we watched Evan and Milla so that Juliana and Michael could go to their conference, after which they picked up the 3 kids from us, so we could go to Mira’s conference (which went well, we are happy with her teacher and her report card) and then to acupuncture before picking Mira up again to go Jennifer’s.
On Tuesday 11/15 morning we dropped Mira off to school in the morning, and she spent the week with Ranjeeta, who as usual took great care of her until I picked her off from school again on Friday afternoon. When we got to Cedars, we had requested that Forscher and Susan would see her for her arm pain, and they also both said that it was unlikely to be the cancer (I think I have personally heard it from enough people now to believe it), but Forscher was concerned that it may be caused by the PIC line in her left arm, which is what we suspected as well. However, a Doppler test came back negative, and Forscher decided that the best thing would be to watch it and only do further testing (such as an MRI) if the pain continued for too long or got worse. At any rate, even if they thought that it was the cancer, the answer would still be continue the rounds as planned. Because of the testing the 48 hour continuous ADR infusion started only after 6PM on Tuesday, which also meant we would only get out that time on Thursday.
All in all the round went OK after that, but I can’t help feeling that it would have gone better if she didn’t have to cancel her colonic before it again due to her fever and fatigue. There isn’t much to report from the round itself, since Radhika was so fatigued through it that she slept most of it away. On Tuesday night (per Radhika’s standing request) they gave her the usual heavy anti-nausea infusion of Benedryl / Reglan / Composin / Zantac / Decadron on top of her Sancuso patch, and it flat knocked her out for 16 hours or so. Since we didn’t have to go anywhere on Wednesday (no labs, just watching modern family on DVD and a quick run to Whole Foods for late lunch/early dinner) that was just as well. When she woke up that day she said that she slept like a log and the pain in her arm was gone. Fortunately there wasn’t too much nausea either, just the fatigue, so Radhika went to bed early again, and slept in long on Thursday as well. We kind of dragged ourselves through it all, Radhika got disconnected from the ADR pump by her favorite male nurse Wes at 6PM on Thursday and after some awful traffic on La Cienega we finally got back home just before 9PM. The next day, Radhika went for acupuncture in Encinitas and her Neulasta shot in Vista, before picking Mira from school at 4PM for her counseling appointment with Kathlyne.
Radhika has been in recovery mode since we have come back, but her progress has been slow. She had a lot of stomach pain until yesterday, primarily from the chemo attacking her stomach lining, but also from constipation which of course led to nausea as well. Radhika had no bowel movement for a week after the start of ADR, but it seems like colonics on Saturday 11/19 and Monday 11/21 have helped, and she has another one scheduled for tomorrow, Friday 11/25. Yesterday was also the first day she was eating close to normal, and we try to go for at least one short walk a day to keep her on track. The fatigue continues to be a problem though, even though we went to acupuncture yesterday, and we have another one scheduled for Monday 11/28. It hasn’t helped that since Wednesday 11/16 her sleep has become very disturbed with vivid bad dreams, and the arm and back pain have come back. She had massages from Ruth on Saturday and Tuesday, and another one from Amy at massage Envy on Sunday, but they only help for so long. My guess is that after the stomach is better, and the fatigue has gone and she can do more for her body again, like walking and maybe some gentle Yoga, her back will also get better. Until then it is one day at a time. Oddly enough Radhika is also having a heavy period since Sunday, but even though that tires her out I look at it as a way for her body to rid itself of the Adriamycin.
Looking forward, we are going to take it very easy through the weekend, because now is the time when her white blood cell count is expected to dip. It was fine when the CORAM home health nurse Laura took her labs on Tuesday, but they say 7-14 days after a big round you have to expect this, and of course it leads to her feeling down and lethargic. So unfortunately we had to cancel our Thanksgiving plans at Janet’s house today, but it is just too risky that she falls sick again, like after the Diwali party. On the bright side, Forscher informed us at the start of ADR on 11/15 that he was planning to forego the last big round of ADR+CSP. So as of now Radhika has only 2 more (small) rounds of MTX and the regimen will be over for her before Christmas. This is a great relief for us, because Radhika really did not want to do that round, since last time she felt so bad for so long afterwards (see my first blog entry from July). Forscher says that instead of CSP+ADR he wants to do a PET scan at that time and decide the next steps based on the outcome. I am looking forward to a new year that will hopefully not require any chemo therapy. Currently the last two rounds are scheduled for Wednesday 11/30, and Monday 12/12, with the PET scan on 12/14, but that is all very tentative. One advantage of that schedule is that it ends before Mira’s winter break (12/17-1/8) and we hope to be able to go to Hawaii for a week sometime during that. However, we do want Radhika to recover well before going on those rounds, and Wednesday may be a bit too optimistic. But again, we are taking things one day at a time, and we will try to enjoy the day today and give thanks for the healers, friends and family that have helped us, and are still helping us in these challenging times.
Andre, Radhika and Mira
Wednesday, November 2, 2011
Thank you so much for making my birthday so wonderful this year. All the messages, the cards, the e-mails have been so delightful. And I am so grateful to Janet McDaniel and all of you on campus who sent me such lovely photo greetings. Janet sent you my response, but here it is on the blog for posterity.
I love all of you and I am doing much better now. I am keeping this post short because my father has asked me to post the message below from him to all of you. I will write again soon. Pictures of my family are at the bottom so you get to see what they all look like.... and a bald me in my Diwali sari! :)
With lots and lots of love, Radhika.
From Radhika’s Grateful Parents to her community of friends who are standing in for us:
We have been ‘visiting’ Radhika the last few weeks and got to know how much care and attention, and above all confidence-building love she got from all of you. We met some of you at Ranjeeta’s home but we know there are many more whom we may not meet before we return to Chennai, India, this Thursday, 3rd November. For several reasons, most of them sound more like excuses than valid reasons, we cannot stay longer; but we are leaving with full confidence that our absence will make no difference to Radhika’s recovery, recuperation, and above all her refreshing cheer which is contagious.
When Radhika came into our life 38 years ago, her arrival recalled a few lines from two French poems, which I had read long ago and merged the texts to read “rienne n’ est beau comme une enfante, qui venant dans ma vie l’eclairerait”. (Pardon me if there are mistakes in syntax or grammar, it was some six decades ago that I made up the song). She has been my light and my cheer all through these three decades and more and I never got the blues when she is around. And, I was always thrilled to find that wherever she went, in school, College, University or Group Events, she was bound to spread cheer and joy all around. None could resist her endearing smile or explosive laughter.
So, you can imagine my chagrin, my woe, when she broke down when talking to us on the telephone, three or maybe four months after she started her treatment, keeping us in the dark until then, instinctively obeying her brother’s wishes. For, I had about the same time gone through an equally rigorous procedure and my son did not want me to be loaded with any anxiety about my daughter. Even when she at long last spoke to me (imagine we did not hear her cheerful chirping voice for four long months), she did not give any details, apart from the fact that it was Cancer that troubled her and that the treatment was worse than the disease, making her despair with life. We did what we were wont to do in such situations; went to our family preceptor, aacharya as we call him, and laid bare our problem. He assured us about her sure recovery by September and suggested some spiritual remedial measures. We followed his instructions faithfully.
And, as the messages on E Mail and voice-mail became more cheering we planned our visit – still, of course, subject to my Cardiologist’s approval and my son’s permission. Meanwhile, Facetime, brought us closer. Radhi had barred our access to it; she was loathe to let us look at her bald head lest it should shock us. But I told her to look at the flip side of the situation: (a) it brought back memories of one-year old Radhika, so sweet and endearing, and (b) unlike bald heads usually, hers had no bumps or crimples, so smooth, recalling to me Ingrid Bergman.
But, the shock came to me after I came here. Though her head was bald again that did not bother me. As I told her she is always lovely and it is her cheerful countenance that made her lovely.
The shock came when we saw her postings in her Blog, some she could not do because she was too sick and Andre stepped in to keep you all in the loop. As Mom and I went through those postings, with tears hiding our vision, we learnt the grueling time she and Andre had gone through. Then we understood the kindness and concern Andre and our son had for us in keeping us in the dark. We really could not have stood the travails they had gone through. We had that grueling experience when she was at Scripps. But, that was in 2006 when we were both five years younger and not so much ravaged by ill-health.
We realized how blessed we are in having a son-in-law like Andre who husbanded our daughter as that relationship defined (in Sanskrit, the word is bharta, the bearer of burden). What a precocious and mature-beyond-her age our seven years old Mira has been through all this excruciating time! And how much blessed we are in our son, daughter-in-law and grand-daughter . Our son is not very demonstrative but his actions speak for him; the daughter-in-law (Oh! These nomenclatures sound so inappropriate) says and acts appropriately and with expressive affection; and the grand-daughter is so much like Radika spreading cheer and joy by her mere presence as some of you may have noticed.
We also learnt how much more affection and love she could get from friends and the community in a critical situation. Everyone came forward willingly and spontaneously. As some of you told me it is amazing how much we can do to be helpful when prompted by a circumstance we could never have contemplated . The occasion has only to be brought to our attention and it kindles our innate urge to be helpful. Oft, this urge which belongs to our humanity (we call it insaniyat in Hindi), lies dormant or even if awake cannot of its own find an outlet. A catalyst is needed to arouse it and channel it. And that is what our inimitable and remarkable Ranjeeta has been in the present situation. She is the Catalyst that jelled this community of wonderful friends who restored our daughter’s confidence not merely in her self but in the goodness of humanity. We are sure that this community will survive and flourish to enjoy the charms of our dear daughter, who is born to bring light into the lives of everyone around.
I will be failing in my mission, if I do not express our gratitude to one who made all this possible for us all, myself and mom and all of you. But for her persuasion, not just by words, but positive action, including foregoing a week of her indispensable service to her patients in order to convince Radhika to get a correct assessment of her illness, Radhika or we would not be where we are. This is the one and only Jennifer, who was not just a physiotherapist for Radhika but her friend, philosopher and guide.
As practicing adherent of Sanatana Dharma, the eternal Order of Life, which is what Hinduism is commonly known as, my wife and I both believe (and we hope and believe our daughter does too), as vouched by our scriptures, that Divinity need not and does not directly and visibly intervene, but enters the consciousness of one or more human persons to bring about the desired result. This has been repeatedly made evident in our lives. Call it by any name – Divinity as I have done here for general acceptance, we both and our daughter too call Him MALOLAN – the existence cannot be denied.
from Ramamurthi and Hema (Radhika’s Mom, though more learned than me in scriptures does not generally give expression in words to her thoughts, but agrees 100% with my exposition)
Wednesday, October 12, 2011
Tuesday, October 4, 2011
I know that my last entry was a bit frightening. Since I didn’t want you to worry I had planned to send another update sooner, rather than later. Of course my brilliant ghost writer jumped into action instead with a post on Tuesday 9/20, and I can’t imagine anyone being worried about her after that one! By the way, the blog dates are when you start writing the blog entry, not when you post it, so that I have now started to write my updates off line until I get the time to post them. The next 3 paragraphs were actually written on Saturday 9/17 at Cedars, and the rest was written Tuesday 10/4.
Continuing where the last entry ended, Radhika slept until 8PM Friday with only occasional bath room breaks, so the Ativan knocked her out for a good 7 hours. After she woke up we watched episode 43 of the Queen, and at 9:30PM it was time to leave. She was dazed and tired, but wanted to walk to the car nevertheless, since the 2000ml hydration had given her some energy back. The news that we’d be able to go home on Saturday really lifted her spirits, and I stopped by Whole Foods to pick up grapes for her and dinner for me, while she waited in the car. When we got back to the apartment she threw up once in the courtyard, but by 10:45 we were both asleep after having had some dinner: beef and veggies for me, rice and yoghurt for her.
I spent Saturday morning packing and getting ready to leave straight from Cedars. Radhika woke up somewhat unexpectedly at 8:30, saying that she had acidity and briefly spitting up, but after an Ativan she went straight back to sleep. The Ativan is taken sublingually, so it is really the best anti nausea med for her stomach, and the fact that she slept so long after the one the day before would also mean that she’d be fine until the IFEX pump finished at 1:30PM. I woke her up at 11:15, after which we watched episode 44 and then she took her shower. That fatigued her so that she had another vomiting bout, but after some rest she could eat some rice with yoghurt. As it turned out we only got to Cedars at 2:30, because packing up alone took me longer, so that we only got out of there by 8PM after 5 hours of hydration.
I read my entry from April 7 again, and it vividly brought back the memory of how ghastly IFEX 1 was for us. This time we really had only one bad day, Friday, and that was nowhere near as bad as even some of the better days we had during IFEX 1. She lost 4 pounds of weight this time, just like last time, but I think last time her end weight was inflated because of all the hydration she was getting. She was still keeping some food down this time, since we were careful what she ate and she had fewer problems to start out with. The only thing is that she may not remember much about the last day or two, since she was pretty out of it mentally, but from IFEX 1 she remembers nothing at all, so even that is relatively speaking better. Moreover, as opposed to last time, her blood values have almost all been in the range for a normal person. We are certainly glad that this round is behind us, and that Forscher said to Radhika the round before “No more IFEX after that, unless you want more” because I am pretty sure that means we are done with IFEX.
Funny reading these last 3 paragraphs, because more than 2 weeks later it all seems so far away. Radhika's blog entry gives a great description of our first experiences back home. As you can imagine we spent these past two weeks getting used to our freshly painted house and the possibilities it opened up. The smell was completely gone by Wednesday 9/21, and Radhika was doing well. We were a bit surprised when on Friday 9/23 afternoon we found out that her blood test from the day before showed her white blood cell count to be really low. With the impending weekend it made for a hectic afternoon trying to figure out what exactly to do, and in the end it meant another blood test on Monday 9/26 (which ended up showing that the Neulasta shot had fully kicked in and her whites had gone back to normal) and just being careful not to catch an infection in the mean time. Radhika felt fatigued on Saturday 9/24 so that I took Mira to gymnastics and the soccer game by myself, but other than that we didn’t go anywhere and didn’t do much of anything. Radhika never developed a fever which meant we didn’t have to make any trips to Cedars. By Tuesday 9/27 she felt fine, and we spent the rest of the week talking about curtains, kitchens and sofas, buying some things from Lowes, Home Depot, IKEA and the container store, and going for acupuncture. It is a lot nicer to deal with window treatments than chemo treatments! Of course that is easier said than done sometimes, because just as we were getting into the swing of things, Radhika’s hair started to fall out again. This happened after the first round of IFEX as well, except it went a lot faster and led to Radhika getting her hair cut off 10 days after the end of the round. Today it is 17 days after the end of the round and maybe she will get a clean cut tomorrow, but the fact that it took twice as long to get to this stage is again an indication of her resilience. She is now doing well, except for her hair, and the cough which the doctors/nurses/acupuncturist say is caused by the chemo making the lungs drier.
One reason for why we have been motivated to work on our house is that the painting has given us a fresh start for this: all the windows were uncovered and there was no wall art of any kind. Another reason is that Radhika’s parents will be coming from India this Thursday 10/6, and we want the house to be somewhat presentable by then. It is tough though, because these things always take longer than you want them to. We have learned though that we like to think things through rather than going for the next best thing, so on the flip side we have to be patient with ourselves and the process. I am pretty sure that by January we will be living in a vastly improved house.
Looking forward, the next 2 rounds of chemo will be MTX starting on Monday 10/10 and 10/24, respectively. Radhika’s parents will be with us for both of those until they leave again on Thursday 11/3, so they will take care of Mira for us during these 2 rounds. Radhika’s mom is a great cook, so we will all be well taken care off for these 4 weeks. Her next big round is Adriamycin on 11/7, but she didn’t have all that many problems with Adria last time, so we are not really worried about it, especially since it seems quite far away. Radhika’s next scan is on Tuesday 10/11 and we hope it will show the improvements she has felt. Of course I am planning to keep you updated about the results as things unfold during that round.
Sunday, September 18, 2011
IFEX is over! It's really over! And two days earlier than expected. As you might have gathered from Andre's last post, things didn't continue as perfectly as the first two days. The nausea slowly started creeping back, together with fatigue. I'm so glad that Leticia and Kent got to see me while I was still ok (and I actually got to eat the delicious dinner she made). But it was still not as bad as the last time, so I was really surprised on Friday when we went in to Cedars for the usual round of hydration, and I woke up to find that Forscher had decided that Friday night would be my last night of IFEX! I smiled at him very prettily and thanked him, without truly believing he meant it. But he did! Apparently, Andre told him that I threw up 3 times between 10 and 1, and he decided that I didn't need to suffer any more. When Andre told me that today, I couldn't help shaking my head -- I hadn't even realized that I was suffering.
It is over, though, and now comes the slow slog to recovery, to feeling like myself again. I spent the last two days moping and feeling just sick. My emotions are all over the place and though I haven't shown any tendencies towards knife carving (as Alyssa so delicately put it:), I did deplore to Andre my lack of homicidal friends.
I have such wonderful friends. We came back on Saturday night to a gorgeously painted house, thanks to Bill Hood. Bill is an amazing painter -- lucky Toni! Our house looks like a new place. I love the entry way which is a beautiful rust red, but it took me a minute to adjust to the rest of the house, which is YELLOW. In all fairness, Bill did warn me that it would be yellow, and so did Ranjeeta, from whose house I drew inspiration, but the yellowness of it still took me back. The house still had a faint smell of paint, enough to make me queasy, so we got back in the car and drove to Ranjeeta's house for the night. Mira wasn't there since she was spending the night with Kim, Helena, and Penelope, which Andre thought was a good thing because he didn't think I was in any shape to handle Mira's energy. She came back the next day after a wonderful time with Helena and Penelope and exclaimed with delight over the green-ness of her bathroom. She walked in and completely ignored me to run upstairs and look at the bathroom. It's funny because one of my worst memories of the last round of IFEX was coming back home, nauseous, sick, and bleary, and just walking by her to get to the bed. For weeks now, I've tortured myself, good-mother-guilt style, imagining how she was waiting for me all week and how I just ignored her. I think I'll let go of this now.
Andre was right -- painting the house is really helping me recover. Yesterday, as I sat mourning to him, telling him the pointlessness of it all, he pointed out that we need new curtains and they will help soften the yellow walls. I said austerely that it was futile to buy curtains when everything ends in death anyway. He agreed and asked if that meant we could pass on the kitchen remodel. For a second, the IFEX induced wraith in my brain went up against my Inner Woman. Then I sniffed and said faintly that the great American economy was depending on me, and even if all have to die, we don't have to die destitute.... Or with bad kitchens.
So, somehow I'll get better and I hope you will come to visit our brightly colored home because this house is just begging for the laughter and cheer of wonderful friends like you. And so am I.
PS: Since Janet asked, here's a recent picture of me at the apartment. As you can see, my hair has decided that it's going to pretend that chemotherapy is done. My hair has always had a stubborn refusal to conform and a strong habit of doing its own thing, flat irons and gels, notwithstanding. I am grateful to it, but I still intend to go wig shopping sometime. :)
Friday, September 16, 2011
Dear friends, it is 6:30 AM on Friday. Since this round is so long I decided to write a blog entry at the midway point, and I will post it when I get to Cedars at around 2PM. Long story short, so far it is going as well as could be hoped for, and certainly much better than the other time she had IFEX. But I guess you could tell that already from the entry Radhika wrote on Tuesday and posted on Wednesday.
The week before we went to Cedars was good, but very busy. I got my promotion application turned in on Tuesday 9/6, and I have since heard that the file has been deemed “complete” and now all that remains to be done is to wait for it to be reviewed by the Department committee, the Dean, a University wide faculty committee and then our Provost will make the final decision by the middle of June. Radhika has been a great support in this, because she took care of Mira in the days leading up to the proposal, especially on the weekend, on Monday (which was a school holiday, and Mira had a fever), and Tuesday (Mira had to stay home since she hadn’t fully recovered yet.) On Wednesday Mira went back to school, but Radhika and I were kind of spent, so we decided to stay home and not do much.
On Thursday Radhika and I went to the mindfulness retreat, so that we could both wind down a bit from the prior days and to help us prepare for the upcoming IFEX. Deer Park monastery in Escondido is a very peaceful place, and it had great energy. There were several hundred people there to listen to Thich Nhat Hanh’s Dharma lectures about Buddhism and mindfulness; to participate in group discussions (which we skipped since we didn’t feel fully comfortable with it given our state); to have a silent communal lunch; and to have an after lunch meditation session. There were also early morning activities starting at 5:30AM, but we never got there before the Dharma talk at 10:30AM, and evening activities, but we missed those as well. On Thursday we drove home at 3:30, and during the 30 minute commute back home the power went out in all of San Diego county due to human error and a problem originating in a power substation in Arizona. So when we came home it was quite peaceful, and we avoided most of the traffic mess that ensued other than they were sending everyone home at Palomar College. We figured that Mira would still be safe at KOC, and I only went there at 5 to pick her up. We had a candle, torch and moonlight dinner that evening on our patio, and we moved the rest of our freezer food to the ice box. We had given our neighbors Joe and Julie some of our food we didn’t want to spoil, and in return we got some extra Tiramisu cake from West Gin bakery they had bought. It would have been nice to have dinner with them, but we didn’t want Mira to give any remnant germs to their baby Junalisa and their 3 year old Jacquelina. Like so many people we all went to bed early that night, it was “lights out” by 8:30 for all 3 of us.
When I woke up Friday morning I found that the power was on (it must have come back for us around 1AM), but that due to the uncertain power situation all schools and colleges in San Diego county had already been cancelled before midnight. So we decided to take Mira with us to Deer park, and overall that turned out to be a good decision. I think for a 7 year old, Mira can be quite mindful, and she clearly enjoyed the peaceful atmosphere and the delicious food. Still it was a bit of a challenge since we were all a bit anxious about being gone for the whole upcoming week. After that we went to Encinitas so that we could all enjoy an ice cream and then Radhika and I got some acupuncture from Christine to relieve the tension.
On Saturday we had decided that Radhika could spend the Day at Deer Park, which she enjoyed, while I spent the day with Mira. To complicate things we had the contractor, Lee Masters, come to our house that day to work on the light fixture in the kitchen, since we wanted to replace it with something nicer before Bill Hood would come to paint the house on Monday. So Mira and I went to gymnastics at 10, the library right after, than lunch at home a noon (which was a bit of a challenge since the kitchen was tented), followed by the soccer game at 12:30. It was a fairly evenly matched game, that Mira’s team barely won 1:0 even though they were attacking most of the time. (On a funny side note: The week before our Saturday was similarly crazy, because Radhika had an appointment with Dona in Encinitas, so Mira and I were also running around until it got time for soccer and I realized it was the one Saturday without a game!) When we got back home from soccer, Mira watched her library DVD and I took care of a couple more things, such as the recycling and some cleaning up, until Radhika came home. After Lee left we went to the Elephant Bar because Mira’s sticker chore chart was full and that’s where she wanted to go.
On Sunday, I went to Deer Park and Radhika spent the day at home with Mira. There was still a lot of prep work to be done for the painting, and after I came home around 2PM we all worked together nicely until we went to Ranjeeta’s at 6 for dinner and to drop off Mira for the week. Radhika and I did more prep work that evening, until we fell into bed fairly exhausted. On Monday morning it was more activity, since Bill already came at 7:15AM to start the painting. Overall I must say that part all worked out well, because between the monastery and the upcoming painting we were so busy (in a good way) that we didn’t have as much time to think about IFEX as we could have had.
At 10:30 on Monday 9/12 we left for Cedars. I wish I could say that the drive was uneventful, but unfortunately I got my first ticket ever for anything other than parking: speeding in the car pool lane at 75 mph in Orange County, trying to make up time after we stopped for lunch at a Whole Foods. I guess that is the price to pay for getting treatment in LA and with all the driving back and forth it was inevitable, I just hope the insurance won’t go up too much. At least the rest of the day went well: I dropped Radhika off at Cedars, went to set up the apartment for the night (stocking the fridge and the pantry, making the bed, putting out the towels, …), and found Radhika in decent spirits when I got back. Since we got there a little late, and we always have to wait for the blood tests before they can start the treatment it took us until 8 or 9PM before we got to the apartment. Not real late, considering that for MTX it is often around midnight. Nevertheless we just had time to eat before we went to bed.
On Tuesday our appointment was at 1:30, and Radhika was already up at 7AM, so we spent a nice leisurely morning together and we got to Cedars on time. Forscher stopped by Radhika’s room every day, which is a good, because given how bad the previous round went I think he wants to be prepared if the other shoe drops. I am not sure if he is expecting the shoe to drop, but better safe than sorry. That day we also chatted with him about the prospect of the Chargers moving to LA and what that would do to ticket prices, given what you have to pay for Lakers tickets and that it is the same group of people building the stadium. Forscher thinks that that organization will want a team in LA that is ready to compete right away, and so the Chargers would be desirable for them. We went straight from Cedars to the apartment and got there at 6PM. Kent and Leticia, were already there for dinner that evening. She had made a Shrimp cocktail appetizer, and Beef Stroganoff with noodles and a great salad with some bread and butter on the side, and a dessert. The evening went very rapidly, and after they left we took a walk in the fresh air before going to bed.
On Wednesday we were late for our 2PM appointment since Radhika slept until 10AM and we went to explore “The Grove” a neat shopping and entertainment mall near CBS studios on Fairfax. We had a good time there and lost track of time, before we rushed off to Whole Foods for Lunch. The time at Cedars was again uneventful, with Radhika reading and my playing an online game. When we got home we went for a walk and talked to Ranjeeta on the phone. Unfortunately after we got home she had her first episode of vomiting this round: probably some of the food she had at Whole Foods didn’t quite agree with her, and the cumulative effect from the chemo started taking its toll as well. The night went well, since we have been very careful with what she had been eating, primarily rice with yoghurt.
Despite the increasing nausea and her frequently complaining about stomach cramps, Thursday went fairly OK too. Radhika slept from 10PM until I woke her up at 10AM that morning. We went to the post office before going to Cedars at 1:30, and we spent most of our time at Cedars by watching 2 more episodes of the Great Queen (we are now at Episode 40.) After we got back we just had a quick walk, some rice and curds for dinner for her and left over from Tuesdays feast for me, and at Radhika’s request we both went to bed already by 9PM.
UPDATE 5:30 PM, FRIDAY: I wrote most of this blog before Radhika woke up at 10AM this morning, and had meant to post it when we got here at 2PM, but things have been happening today. I could tell the cumulative effect of 4 days of IFEX on Radhika right as she got up. She threw up 3 times this morning: her midnight Boost upon waking up, then her morning tea biscuit (which she had while we watched the Queen) before her shower and some melon after the shower. At noon I convinced her to take an Ativan, her first nausea pill so far this round. It put her right to sleep, something Ativan had never done for her before. That surprised me since the other option, Benedryl+Reglan, does exactly that to her, which is why I avoided it in the first place. I woke her up at 1:30PM for the appointment at Cedars, so she said her prayers, got dressed and off we went. As soon as we got here she went straight back to sleep and hasn’t woken up for more than a minute or so when somebody asks her something. I could tell she was kind of dazed and confused even before the Ativan, and when I described the symptoms to Forscher at 2:30 PM he immediately decided to shorten the round by skipping the last 2 days (Sunday and Monday.) He said that last time he started her at a higher level and had to drop her to a much lower level to get to the minimum 10 (I think it was grams per meter squared), and that this time he started at a medium level and that as long as she continues at that until 1:30PM on Saturday she will have reached that level and actually have gotten more than last time. He said that at that point the added benefit in fighting the cancer from the extra two days of IFEX is not worth the neurotoxicity it would cause. Thank god for doctors who look at their patients and don’t just follow some regimen.
Radhika went into this round in really good shape, and as gruesome as this last paragraph may have read, it is going MUCH better than the last IFEX. Obviously she is not eating or drinking much right now, but at least pain, constipation and stomach acidity are not a problem. I think she will make it out OK as well, and unlike last time there should be no overnight stays at Cedars with a concerned Dr. Natale jumping into action.
The plan now is that she will be off of the IFEX by 1:30PM tomorrow, since the 20 hour infusion just got started. Then she will get 4 hours of IV hydration with Mesna (the drug that protects the kidneys), and we should be able to leave by 6PM putting us into our own house by 8PM Saturday. For that to happen I will be pretty busy tomorrow morning packing up the apartment, so that we don’t have to go back there from Cedars. Bill said that he’d finish the painting of the house by noon, and with the VOC free paint we should be able to be in the house without noticing anything; he had planned to be done a day earlier, but he had problems with the paint and he had to put about 6 coats of it down, something he said he had never experienced before with a Benjamin Moore paint. If that doesn’t work out and Radhika can still smell it, then we will just stay Saturday night at Ranjeeta’s house. On Monday we are scheduled to get the Neulasta white blood cell boosting shot at the SD cancer center in Vista at 11:30 and then the true recovery from the round can begin.
I will write another update some time after this round is over. Please keep her in your prayers, so that the time until Monday will pass as quickly as possible, she will remain in reasonably good shape emotionally and physically, and that the IFEX takes a big bite out of her cancer.
Wednesday, September 14, 2011
Day 1 of my IFEX treatment is over, and I've survived it fine! Since the last Mtx treatment, I've been anxious about this week. I can't remember much from my last round of IFEX, but what I do remember is not in the least bit pleasant. I have been dreading a repeat, even though Forscher, Susan, and Andre keep reminding me that I am in a different place now and so things are not likely to go as badly as they did. Andre pointed out that instead of thinking about how dreadful IFEX was, I should consider that it turned things around. As hard as it knocked me, it certainly also did damage to the cancer. And perhaps it will do so again.
These are good thoughts, and I do repeat them to myself, but underneath,I feel a tension in myself, as though I am waiting for the other shoe to drop. My last real memory of IFEX is coming in on Day 2, feeling nauseous, bewildered, and lost. Forscher came in to ask how I was doing, and even before I responded, I could see the concern in his eyes. Hardly had I gotten the words out of my mouth to tell him that I felt strange that he said he would reduce the strength of the drug and that would help with the confusion I was feeling. He did, and probably it helped, but I had already crossed the stage, and the rest of the week and the week after we got back home, I spent in a stupor, unaware of what was happening around me. After the fog lifted, I found myself in a deep depression that I could not understand. I couldn't stop crying, couldn't think of anything else but the pain I was in and how death would be a relief. I scared the daylights out of Andre by getting up from bed one night and declaring that I was going to the kitchen because that's where the knives are. Right now, I think back to that and cannot understand what was going on in my head -- those kitchen knives are blunt, I'd have had a miserable time trying to slice my wrists or hacking at my jugular vein (even if I knew where it's located)! It seems funny now, but even when I laugh about it, it is with an uneasiness because I remember how earnest I was.
The nurse yesterday explained to me that IFEX can cause neurotoxicity in the brain, and that is what likely happened tome the last time, but she said Forscher has changed the dosage I am getting this time and also decided not to start me before I got hydration and anti nausea drugs. I'm glad. When I saw Forscher today, he asked me if I was feeling the same way as I had the last time. I told him, "So far, no.", and asked him hesitantly if I should expect to lose my wits in the next few days. He said that he thought it was unlikely. Apparently, the reaction I had was an unusual one that happens rarely (ha ha) and was, he believes, exacerbated by the fact that I was on so many pain meds at that time. So, perhaps I won't become suicidal this time and that will be a good thing.
Actually, I have the suicide thing resolved in my head. After I started on the Lexapro, I realized that it would not be suitable to indulge in such an act in the kitchen and have Mira come and view the remains. Baffled, I thought for two weeks and concluded that it would be best to take the knife and go out to the park behind our yard. It made a very romantic picture in my head -- a full moon shining down on the park bench, the leaves of the tall trees rustling softly and the scent of the wet grass and earth. But when I discussed this with my dear friend, Anurag, he pointed out to me that blood factor remained and little kids come to the park (and little animals besides), so I had to abandon that plan. For the next weeks, I puzzled over trying to find a method of suicide that would not traumatize small children. I suppose the neurotoxicity in my brain is why it took me so long to remember the proximity of the Pacific Ocean coupled with the fact that I cannot swim. Since I've hit upon that, I feel more relaxed. Don't worry, dear friends, the fact that I am telling you all this is, I think, an indication that I have no intention of committing such a rash act. Nevertheless, it is a relief to me that there is a neat solution to my question. ;)
I'm just glad that my sense of humor is back. It was gone completely after IFEX last time. I remember watching Modern Family and not cracking a smile. I remember telling Ranjeeta and Andre that whenever I tried to write, it was all depressing, and their response that perhaps from this point on, I would only say profound things. They giggled about it, but i was close to tears. To be profound for the rest of my life seemed an unenduringly depressing prospect. Thankfully, that seems unlikely.
You know, dear friends, i was thinking today that even though this is the worst time in my life, I couldn't ask for better circumstances. I am so lucky to have a job with good health insurance that allows me to get treatment where I need to, a community of friends that is so wonderful in its support and kindness, friends who leave their own families to come take care of me and mine, a brother and sister-in-law who are so loving and kind, a beautiful apartment where I can stay during treatments, and a wonderful husband who takes such good care of me. I am so grateful to all of you for the love you send my way, and I hope that after this treatment things will improve enough to allow me to see some of you. Tonight, we see Leticia and Kent and I am so excited. They are such wonderful friends and seeing them will distract me from wondering about each little twitch my body makes.
Thank you all for walking this long journey with me.
Thursday, September 8, 2011
Friday, September 2, 2011
The week leading up to MTX 9 went very well, despite the fact that it was quite hot most of the week, and that the labs on Tuesday 8/23 test showed that Radhika’s white blood cell count was on the low side. Radhika and I got acupuncture on Friday 8/26, and we felt physically fine, if a bit sluggish, all week. On the bright side Radhika’s weight is now actually slightly higher than what it was when she started the first round of chemo. That is a pretty big deal, since Susan keeps reminding her to eat and keep her fighting weight up, and the acupuncturist also says that there is a high correlation between the successful treatment of cancer and keeping a good weight. This is all in no small part because of the food so many of you keep delivering and for Marcia and Ranjeeta for keeping it all together.
Wednesday 8/23 was Mira’s first day of 2nd grade, and even though the days leading up to it she was a bit edgy, spending too much time online probably didn’t help with that, the day itself went well. We are all happy that her friend Cassidy is one of her classmates. They are also in the Kids-on-campus after school program together, so when I went to pick her up that first day, she didn’t even want to come home. On Saturday 8/26 Mira finished learning all the skills in her level 2 gymnastics, so she will advance to level 3 if she passes the test next Wednesday. On the same day was also Mira’s second soccer game. They all played much better, and the other team was physically smaller than Mira’s team, let alone the team they played the week before, so they must have won something like 8-0. Mira didn’t have to play in goal, but was offense for most of the game. She was much more focused on the game, scored 2 goals and was involved in 1 or 2 more. That afternoon we met Alyssa Sepinwall and her son Jacob in Carlsbad and we all went swimming, except Radhika who didn’t want to take any risk of infection because of her white count. Mira slept well that night and on Sunday we mostly did things around the house.
Monday 8/29 started off well: Mira got to school on time, and Radhika and I energetically got ready to go to Cedars. Since for this round Mira would stay at our house with Teresa Shallow, who used to work in the faculty center with Radhika, we wanted to make sure that the house was actually in good shape and that they would be able to find everything they would need. By 11AM Radhika and I were both a bit spent, so we went for an early burger lunch at Five Guys, picked up some bagels and fruits from Sprouts and went back home to finish packing. We left for LA just after noon, but my brain was not working well that day, because as soon as we got to the apartment in LA I realized that I left the keys in San Marcos. So we went straight to Cedars, and I spent the next couple of hours fretting and calling people (thanks Judy, Sonia and Leticia) until I could get a hold of our landlord who, despite having had a busy day himself, dropped off the spare keys at the apartment where I picked them up there by 7:30PM. Thank you Joe!
While I was worrying about all that, Radhika was my rock, which is funny since she was the one getting the MTX, and the nurse we had this time wasn’t our favorite either. One thing in the nurses defense though is that she figured out that Decadron and Sodium Bicarb are compatible, so that now Radhika can take her 6 IV premeds in just 90 minutes, instead of the 3.5 hours it would take if they were run one after the other, shaving off another 30 minutes from the premedication routine. By 6:30 PM Radhika was asleep, and she slept through the MTX (6:45-10:45PM) all the way until 11AM the next morning. The main complication we had after that was that at 8AM on Tuesday I realized that while I had gotten Radhika’s IV fluids and supplies (thanks to the CORAM people who called me yet again on the Friday to make sure I had what I needed, or I would have forgotten!) I had left the actual pump back in San Marcos! This forgetfulness is really bothering, since by now I ought to be more together about these things. Radhika thinks that I am so scatter brained because I also have been working on putting together my application for promotion for full professor, which is due on September 6. I hope she is right, because forgetting the keys and the pump in the same round was not good!
The problem with forgetting the pump is that it meant that Radhika had to drink 3800ml from the time we saw Susan at 2PM on Tuesday until 2PM on Wednesday, whereas normally 2000 of that would be IV for her. So that meant that she had to drink about 12 tall glasses of water/tea/juice over the period of 24 hours. Given that she typically sleeps more than 8 hours per day this is almost 1 glass per hour. Treigh had to do this for each round of MTX, and found it difficult at times, but I hope that for Radhika this will stay the exception. Fortunately Radhika got through it OK, and by bedtime she already drank 3000ml and by the time we went to see Susan at 11 the next day she already had exceeded 4000 ml: some tea and some fresh watermelon juice, but largely a mixture of 2/3 water and 1/3 lemonade. This regimen also affected her eating, since normally she prefers lighter food, such as the rice+yoghurt or mashed potato we had brought along, but with all the water sloshing around in her she wanted something more solid. Since we weren’t quite prepared for that, we ended up walking to the Subways that is on the other side of the street from us and sharing a chicken sandwich on Tuesday night.
The night went fine, with only a bit of nausea (in fact she needed only 1 Ativan the whole time we were in LA,) and we spent Wednesday morning packing, so that we could leave right from Cedars after having her blood drawn. When we got there at 11:15 or so Susan wasn’t there, since she must have been dealing with a complicated case. So we ended up chatting with some of the other cancer patients that were also in the outpatient room: another Sarcoma patient of Dr. Forscher who moved back to LA from Vancouver since she couldn’t get the same level of expertise there, as well as a woman from Lake San Marcos who told us she has what Steve Jobs has … it’s a small world. Most of the patients are surprisingly upbeat, but being upbeat and feeling well taken care of does help when you are being treated for cancer. Just after noon we finally got going back home, but we stopped at a Rubio’s in Mission Viejo because we both felt hungry. While we were there Susan called us to tell us that Radhika’s labs were fine and that she should just continue taking Leucovorin until noon on Thursday. By 2:30 on Wednesday we were home again, and we started Radhika on a 2000ml bag of IV hydration right away. We had arranged for Mira to be picked up by Sophia’s mom Rose to go to soccer practice and that gave us a breather until 7PM. We needed that because Radhika was exhausted, and I always like to take my time unpacking, going through the mail and phone messages, and starting the laundry. Mira was in good spirits, and apart from the fact that she couldn’t find her soccer ball anymore after practice and that she had forgotten her water bottle at school she had a great time while we were gone. Thanks to Teresa for taking care of her, and to Sonia for bringing her to school on Wednesday morning.
Thursday was a slow day, I finished my chores and started working on my promotion file again, but unfortunately Radhika was not feeling very good all day despite getting another 2000ml bag of hydration. She took it very easy all day, primarily watching Eddie Izzard on you tube, and trying to get through the day. I was home with her except that I went to “back to school night” at Mira’s school and did a quick run to Rubio’s for her dinner while Mira was playing with Jacquelina next door. So while I’d say that Monday through Wednesday went better than last time, the Thursday was actually worse.
We will see what the next few days will bring, but for me they will primarily bring working on my promotion file. Our other main task leading up to the next round, Ifosfamide (IFEX), is to declutter the house a bit, so that it can be painted from the inside. Radhika happily picked the paints for inside the house the week before MTX 9: yellow and a contrasting pale rusty red for downstairs, and then orange for the master bath, and green for the other two bathrooms. The painting will be done during IFEX, which is scheduled from September 12 through 20th. IFEX happens to be the only remaining really long round of chemo, so the timing couldn’t be better. It will be nice to come back to a freshly painted house, and this gives Radhika something to look forward to since she is not particularly looking forward to IFEX. Radhika has basically no memory how IFEX 1 went in early April, because she was so far gone during that round, and that worries her. We have talked to Dr. Forscher and Susan on several occasions about it and they keep saying that this round won’t be as bad as IFEX 1, since Radhika has so drastically improved in every aspect. Forscher is not the person to say that something will be going better if he doesn’t firmly believe it, but Radhika is still pretty scared. However, Radhika does try to be upbeat: I gleaned from Treigh’s blog that she only had 2 rounds of IFEX, so when Radhika asked Dr. Forscher if there was going to be another round of IFEX after this one, he said “Not unless you want another one” at which stage we all had to laugh. I do have high hopes for IFEX 2, even though there can always be problems, because in spite of all the difficulties IFEX 1 was a major turning point for Radhika. Furthermore Radhika’s parents have told her that the Jeer at their temple in India has said “The treatment in September will go well and she will see good results” without even knowing that we have IFEX 2 as well as the 6 month scan of her body scheduled for September.
From Tuesday September 6 evening, through Sunday the 11th Radhika and I are also scheduled to participate in a mindfulness workshop by Thich Nhat Hanh in his monastery in Escondido. For me the timing is quite good, with my application for promotion due earlier that day, a bit of mindfulness after working to put the file together will be nice, and for Radhika it will be good too since it will hopefully help her be in a better frame of mind for IFEX!