Andre: MTX 12

Dear friends,

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!