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Friday, March 25, 2011

Looking for monthly rentals

Dear friends,

this is Andre. I wanted to know if you could help us with something. Radhika and I have decided that we would like to rent a furnished studio apartment for the two of us maybe 15 minutes from Cedars, starting May 1 or the week before that. Leticia McCart [] knows the area and has agreed to coordinate the effort to help us find something.

Here is where you come in: if you know the LA area or have some other suggestions that could be helpful, then please email LETICIA (not me or Radhika) with your ideas .. the more heads think about this the better the outcome is likely to be. Here is what I dug up so far myself:

One of the nurses suggested that Culver City could fit the bill for us, since we could probably go via inner roads and avoid the free way traffic. I went to Craig's list (where she found her apartment) and saw a furnished studio for $1600/month that looked nice. That seems like a good starting point, since it would be affordable for us and there would never be too much traffic to fight.

The chemo is scheduled to run for 8 months, and we could probably commit to 3 months to begin with, but obviously if we could get something on a month-to-month basis that would be even better.

The reason we made this decision is that packing up half of our household every time we have to go to Cedars Sinai is too much of a hassle, and then one has to always coordinate departure and arrival with somebody and make sure that there is availability ... besides we have to anticipate nausea, coming and going at irregular hours and other reasons for sleepless nights, and we just want to minimize the hassles for ourselves and others that this involves.

Thanks in advance to all of you for thinking about this.

Thursday, March 24, 2011

Round 2 postponed

Andre here. This week did not start off well: after a fairly good Sunday Radhika had some pain at night, and then escalating nausea on Monday. She couldn't keep her meds down over night and then on Tuesday she couldn't even keep water. We called Forscher's office and his nurse Susan told us that we could come to Cedar Sinai and she would have a room ready for us. So my sister Hannah and I hastily packed up (we will be better prepared next time!) and Radhika and I went off to LA. They indeed had a room waiting when we got there at 4:30 and they gave Radhika IV fluid with pain and nausea meds to stabilize her.

Dr Forscher came to see us right after we checked in and told us that he thought that maybe some of the MTX was still somewhere in her system, and he immediately scheduled an MRI for the next morning at 7. The night went OK, and with the IV meds and hydration Radhika felt better Wednesday morning. One problem was that the strongest pain killer, Dilaudid, only lasts for 2-3 hours and since Radhika was scheduled to show up for the MRI at 6 (god knows why) and got the Dilaudid at 5, then by the time she was in the MRI at 7:20 she was in pain again. The problem with that is that for an MRI you have to lie absolutely still for 30 minutes and the machine makes a lot of noise, so 5 minutes into the procedure Radhika told them to call it off, since this wasn't going to happen that day. Radhika asked Susan if they could do a CT scan instead, and indeed that could be arranged for her for the early afternoon. They did a scan of the brain and the lungs and after we took a break to catch our breath, Forscher met with us at 5PM to tell us that the brain was clear, but that there was fluid in the lungs and that they were arranging to have the fluid removed (which is a good thing, since it can lead to infection) and tested the next morning.

The moral of that story was that it was good that Radhika was her own advocate (the MRI would only have been of the brain, so the CT got us to the possible root of the problem faster,) and that we feel safe in Forscher's hands at Cedar Sinai, because rather than just giving her the 2nd round of MTX he insisted that we find the root cause for the nausea (which he says is atypical for MTX.) Radhika says that she feels that Forscher really cares about her as a person, and not just about the treatment plan ... that feeling is priceless as you can imagine.

This morning (Thursday) she had the CT guided removal of the fluid; again there were some delays, but this time we were smarter in that she only went there at the last moment, and had taken the Delaudid only 15 minutes before that. She came through the procedure fine, and they removed around 400ml of liquid (we were told that sometimes people have 3 times that, but this was still substantial.) After being in the recovery room (which was much noisier than the Infusion center) we went back to the Infusion center, where we met with the pain doctor (who confirmed her protocol for the weekend) and with Dr. Forscher. It turns out that they have to send the fluid to Iowa to be checked, which can take 2-3 days.

So with nothing else to do Radhika checked out and we drove back to San Diego to sleep in our own bed again after two nights of infusions at Cedars Sinai. Overall Radhika is doing much better than she has in a while now, and Mira was happy that we got home earlier than planned. The next will be either next week Monday or Wednesday, and Radhika will skip the MTX round 2 and go right to Ifosfamide. That round will be 8 days long so Hannah will have her hands full with Mira, and we will have some planning to do.

Sunday, March 20, 2011

Rounds 2 & 3 scheduled

Andre here just to let you all know that rounds 2 & 3 have now been scheduled. Somehow we thought that we would automatically be scheduled to start the rounds on Mondays, but apparently one has to schedule the round each time. Dr. Forscher's nurse Susan took care of this for us:

Round 2, Wednesday March 23- Saturday March 26 MTX; in round 1 she cleared the MTX a day early so there is also a good possibility that she will be able to go home on Friday.

Round 3, Wednesday March 30- Tuesday April 5 IFOS; this one will be new to us, but it appears unlikely that we can go home early that week; we should definitely be home Wednesday night at the latest though.

In some sense the slight delay actually works well for us, because this allows Radhika two extra days to rest (she seems to be coming out of the nausea today, but she is still fatigued) and more time to work on the mental side. It also allows me to drive my mother to the airport on Tuesday. In general my teaching days are Tuesday/Thursday, and a Wednesday start means I am guaranteed to only miss one day of teaching each MTX week.

Please continue to send your good thoughts our way, it really makes a difference to us.

Wednesday, March 16, 2011

Round 1 - going strong

Hello, this is Andre again with a quick update from round 1.

First of all thanks to everybody who responded to my previous post ... even those who can't physically help us at this time, your offers and words of support give us strength. Also there was a mistake in that post: Round 3 will be IFOS and not ADR, and the IFOS will be given over a period of 7 days ... we will see how that goes.

About Round 1: we started for Cedars Sinai on Sunday afternoon so we wouldn't have to fight morning traffic to get to our 8AM appointment in LA. That worked well over all, since it gave Radhika more time to think and overcome the dread that chemo is for her. It also allowed us to settle in at the Vedanta society (a spiritual retreat place in Hollywood, 20 minutes from the hospital.) We had dinner there, and went to bed early. Radhika had some pain (like the nights before) but we got enough sleep and got to CS in time for our appointment, even after a quick bite in the hospital Cafeteria. Radhika was emotionally and physically a bit spent, not a good way to start ... but I was relieved that it finally started, because I believe she can beat this thing, and chemo has a good chance of success.

By 10 we got settled in her room (for the day) of the (24 hour) Infusion center. First they put an IV line (if all goes well she will keep this line for the whole treatment) so that they won't have to prick her everytime; next they drew some blood for labwork, then she was wheeled off to get a chest x-ray so that they could be sure the line was in the right place. Forscher told us later that one could see on the x-ray that the tumor has grown and is now also closer to the heart (which explains some chest pain she had since last week.) She was not doing too well, but at 2PM the MTX together with Zofran (nausea med that is supposed to last 24 hours) got started and the infusion lasted until about 6PM. From 10-6 we saw a social worker, a nutritionist and a pain specialist, apart from Dr. Forscher and a bevy of nurses, so we were glad and a bit dazed when we left for dinner at the Vedanta society. Radhika didn't eat much, but she was able to take her evening meds as well as her midnight meds (even though the 4 tablets of sodium bicarbonate were a struggle, but her blood needed to stay alcaline.)

At 3AM she started feeling nauseous (apparently the Zofran didn't even get her to the 12 hour mark) and it kept getting worse. The 6 AM meds came straight back out again and she skipped breakfast ... we got to CS by 9:30 at which time she couldn't even hold water down. They hooked her up to IV fluids and nausea meds and did the lab work: the labs came back looking fine, but Forscher agreed to let her spend Tuesday night at CS, because we were worried she would become nauseous again and not be able to even tolerate any nausea drugs, let alone the pain killers and other rescue drugs she needs to overcome the toxicity of the MTX: she should be at a level of
1000 micromole/L at the start of the treatment to attack the cancer and then she needs to get down to a safe level of 0.15 micromole/L to be allowed to go back to San Marcos (which they say typically happens by 72 hours). The night in the Infusion center was better than the night would probably have been otherwise (they took good care of her, and I got some sleep in a recliner as well) and to make a long story short, she started out at 1052 at 6PM on Monday, was at 11 on Tuesday morning at 11, and then by 6AM on Wednesday she was at 0.22 so that by noon we could go home -- a day early! I was so excited that I promptly locked my keys in the car as we were checking out from the Vedanta Society for the week (a locksmith came right away.) Radhika slept the whole way back, and she is now happy to be in her own bed again. (If you are wondering why I am still up: she had to take a dose of her rescue drug at midnight, and I didn't want to oversleep it.)

Forschers nurse Susan told us it wouldn't this bad next time (they will find ways to control the nausea) and she should be good again to start on Monday. I think Radhika's pain has decreased, which is the best sign that the chemo was a success. We will be better prepared next time as well (I will bring my tooth brush to the hospital next time ... nothings like using your own!)

The next few days will tell us more, but for now good night everybody!

Saturday, March 12, 2011

Dear friends,

with Radhika's permission this is Andre writing to you to update you on the events of the last 3 weeks. We both feel bad that this blog hasn't been updated in so long, but Radhika has been in too much pain physically and I have been too busy coping with work and care giving. I don't know what we would be doing without my mother and the support from all of our wonderful colleagues at the University. I am sure that Radhika will be blogging again soon because it is a great emotional outlet for her, but in the mean time I will fill you in on some of the events.

Dr. Forscher has by now reviewed the slides from Scripps as well as Mayo and he agrees with Mayo that this is a high grade Osteosarcoma and was high grade even back in 2006, even though it had low grade elements, and the growth pattern seemed more in line with a low grade tumor. Radhika and I agree with Forscher's assessment, and we believe that Chemo is the right answer at this stage. Radhika will start her chemo treatment on Monday. In my opinion the fact that the tumor was slow growing is a testament to her strong immune system, and I am extremely optimistic that that together with the chemo will help her get better.

Radhika did 2 full weeks at the immune institute, and even though we decided not to pursue it any further, some good things came out of it: they did a chemo sensitivity test on her and the results show that the cocktail Dr. Forscher is proposing has a great chance of being successful. She also learned that she gets relief from using infra-red heat, so she occasionally uses a heat cabin at a day spa across from Tip-top meats in Carlsbad and we bought her an infrared heating lamp. Having a humidifier at home helps her with her breathing, so even though the pain in her right arm has increased to the point where she has a hard time using it at all, the pain in her lungs has gotten a little better and she doesn't cough as much. There is a lot more that went on during those 3 weeks, but I am hoping that Radhika will fill in those details eventually.

Radhika had another scan done 8 days ago and the mass in her lung has grown noticeably, but since Chemo works better on fast growing tumors I am actually quite optimistic. This is partially since Radhika reconnected with another "Mandibular Osteosarcoma" survivor she met when both of them went through all this 5 years ago. Treigh Mulvaney is an amazing person and Chemo worked well for her at that time: it killed her tumor and she did not have the horror experience that Chemo symbolizes for many people. Dr. Forscher was and still is her oncologist and she just saw him for a follow-up. She had only praise for him and the whole team at Cedar Sinai, and so far we feel similar about it. Treigh has gracefully agreed to let me post a link to her blog so that those of you who want to have an idea how Radhika's journey may continue can take a look:

In the mean time here is a quick outline what Radhika's cancer treatment will look like.
There are a total of 4 drugs (and some supporting drugs) she will be getting intravenously: high dose Methotrexate (MTX), Adriamycin (ADR aka Doxorubicin), Cisplatin (CSP) and Ifosfamide (IFOS). Her treatment is scheduled to go for 24 rounds, with each round starting on a Monday, and including the various scheduled and unscheduled breaks can take anywhere from 8 months to a year. The drugs will be given in 8 cycles, where each cycle consists of 2 rounds of MTX followed by a week of 1 or 2 of the other drugs and then 2-3 weeks off.

So 16 of the 24 rounds will be MTX, which will be put into her system over a period of 4 hours on Monday, and then she needs to drink lots of water and take a rescue drug to get the MTX down to a "safe level" in her body. She will be evaluated every 24 hrs and Treigh usually cleared it within 48 hours, but it can also take 72 hours, so that Radhika can expect to be back in San Marcos on Wednesday or Thursday of MTX rounds. MTX is given outpatient, and other than for the 4 hours or so when it is administered and the daily check-ups she does not stay in the hospital. However we need to stay close to Cedars since the high dose MTX can be life threatening and for complications one really wants to be able to go to the 24 hour chemo center at Cedards and not to an untrained ER in San Diego. We are planning to spend our "monitoring" days at a spiritual place we found with Ranjeeta's help: the Vedanta society temple in Hollywood.

The other 3 drugs will be administered over a longer period of time (2-4 days) on which she will essentially get a fanny pack with the drug that slowly, but continuously feeds into her to minimize side effects. After each round of one of these slow drugs she will get 2-3 weeks off so that her blood counts can normalize before the next 2 rounds of MTX. These off weeks as well as the weekends we plan to spend in San Marcos, but in treatment weeks M-W (and sometimes Th+F) we will be near Cedars up in LA. I plan to be with Radhika non-stop except that on some Thursdays I will need to be back to teach, and we hope to find other solutions for her support. This also ensures that Mira only misses both of us on Monday/Tuesday (and maybe Wednesday) night, but otherwise at least I should be there for her. But we will see how things play out and for the first round Ranjeeta has agreed to help us figure something out if Radhika doesn't clear by Wednesday.

So here is a quick look at the plan for the rest of my semester at CSUSM, since after finals things should get a lot easier for me:

3/14 MTX; 3/19 my sister Hannah arrives
3/21 MTX + Spring break at CSUSM; 3/22 my mother returns to Germany
3/28 ADR; 3/31 Chavez day (thank the lord!) and start of Miras Spring break
4/4 off week + Miras Spring break (good timing); 4/7 Hannah returns to Germany
4/11 off week
4/18 MTX (if recovery is good, else off week)
4/25 MTX
5/1 IFOS or CSP (if recovery was good, else second round MTX)
5/9 off week (if recovery was good, else IFOS or CSP) - last week of classes at CSUSM
5/16 off week; Finals at CSUSM, Andre finishes grading asap
5/23 off week or MTX; grades due at CSUSM

after that things get harder to predict because a lot depends on side effects and how well Radhika recovers. Miras last day of school will be 6/16 and then the first day of classes at CSUSM is 8/29 with Mira starting again around the same time. By that time Radhika will be 25 weeks into her treatment and should have finished 4-5 cycles of MTX/MTX/long drug.

I hope this wasn't too much information for you, but I tried to keep it short while still giving all of you a glimpse of what is going on. Again, I am very hopeful, because for some people the cancer already starts shrinking after the first round of MTX, and when her cancer shrinks her pain will go down. When her pain goes down she can get rid of some of these pain killers that make her so drowsy and she can start typing again, which she is really looking forward to.

Best wishes and thanks for the support we continue to receive from all of you,


Postscript from Radhika: One of the things that bring me joy is reading "Sunset magazine" and "Better home and gardens". If anyone has back issues for these that they'd be willing to lend to me, we would be very appreciative. Just put them in campus mail to Andre and make sure to say who they are from, so that we can return them later.