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!