Saturday, April 30, 2011

Andre: MTX 2 + 3

Wednesday 4/20- Friday 4/22 Radhika had her second round of MTX. It went MUCH better than the first round: she got patches for nausea and pain, and a lot of IV nausea meds, and lo and behold nausea was not nearly as much of a problem. Just once we weren't careful and the bicarbonate came back up since she had it too close to drinking water, but otherwise she was not that even all that nauseous.

Wednesday we got to Cedars at 10AM, and after various tests, IV premeds, an appointment with the gastro-enterologist and of course the 4 hour course of MTX we left Cedars at 11PM after a last round of benedryl & reglan. The night was uneventful. With interruptions Radhika slept from 1PM Wednesday to 10 AM Thursday. She hadn't slept well for 2 days in anticipation, so when she was finally at Cedars she just crashed. On Thursday we went to Cedars for less than an hour for a blood test, but other than that we staid in the apartment. We went back for another blood test and consultations with Susan and Forscher on Friday, and then we were allowed to go back home.

Other than the adjustment in meds and the fact that they slightly lowered her dose of MTX, the apartment is making a huge difference to our experience. It is truly BEAUTIFUL, and it already feels like home away from home. It is 8-10 minutes from Cedars (traffic is no problem) and it is so peaceful and quiet, surrounded by trees, in a safe neighborhood, and lovingly furnished and equipped by Leticia, Marie and Vivienne ... thanks to all of you, this really helps with Radhika's sense of well-being. The first two rounds were scary and the hospital seemed like the safest place to be; now it feels like the apartment is the place we want to get to as fast as we can from the hospital every time we are here ... which is the way it ought to be!

With Forscher and Susan being on vacation the week of April 24-29, the third round of MTX was scheduled for today (April 30) and in fact that is where I am writing from: Room 2 (our room these last couple of times) in the Osher cancer center at Cedars. And so far so good, Radhika just finished the MTX (mostly sleeping, even though we did watch the end of the movie "Secretariat" which we had started 2 weeks ago, not a bad movie), and then in half an hour we will head out from here. I will let you all know early next week how it all went.

We made good use of the week off. After Latha left Sunday morning, Radhika's best friend from high school Kali (who now lives near Atlanta) took care of her for 6 days. Kali really helped Radhika by tailoring a diet specifically to her cancer situation and more importantly she was there to faithfully administer it as well. Radhika has so many amazing friends and you all keep her spirits up with every message of encouragement. Radhika's pain has drastically lessened (she just has to change the Fentanyl patch every 3 days and the oral Dilaudid is basically not needed anymore), and the fatigue has also gone down in no small part due to Kali's loving care. Radhikas attitude is also mostly positive these days, the Lexapro definitely helps with that. Finally, thanks to the CORAM home nursing service which takes care of her blood work in the off weeks, she has her own hydration pump (prescribed by Forscher, administered by yours truly), which we have now taken with us to the apartment: this cuts the amount of water she needs to actually drink down to less than half so that hopefully THIS time the bicarb won't be a problem at all.

Looking forward, we will meet Susan on Monday to discuss the further plan of action, but right now it looks like Radhika will get Adriamycin on Monday May 9th, and after that she will get 1-2 weeks off before the next round ... by that time my finals should be graded, summer break here I come!

Alright, we will be heading back to the apartment real soon here and I have to wrap things up now. Be well!

Monday, April 18, 2011

Andre's update: 2 weeks off, MTX next

Dear friends,

after two weeks at home we are getting ready for the next round. The chest x-ray Radhika took in Oceanside today indicates that there is no fluid in her lungs, and so tomorrow evening we will drive back to LA and then on Wednesday Radhika will start her second round of Methotrexate at Cedars.

These two weeks have seen some ups and downs, but in sum total they were good. Radhika came home on a Wednesday feeling very weak and still nauseated from the IFEX, but the constipation and the pain (thanks to the Fentanyl patch and the chemo being effective) were pretty much gone. The most difficult part was that Radhika struggled with depression, and felt desperately hopeless for the first week. After that, with the help of Ruth and Ranjeeta, we came to the realization that only part of that was the magnitude of the situation, but that the chemo also can affect your brain chemistry. I am very grateful that Dr. Forscher and his nurse Susan were available for us on the phone even during these off weeks, and that Dr. Forscher consulted an expert at Cedars and they prescribed Lexapro for Radhika (coincidentally the same drug that our friend Suvrat recommended.) The difference that half a pill of that made in just one night was astounding: Radhika woke up with a real smile on Saturday for the first time in weeks. Marcia saw first hand how much Radhika turned around in such a short time.

The nausea is much better, as long as Radhika watches what she eats. Food that is too acidic doesn't agree with her: she threw up a batch of blueberries one evening, but otherwise she hasn't had any incidents. We also try to be careful with garlic for dinner, since that sometimes keeps her up at night. I think her stomach is pretty delicate right now, and part of the nausea during the first 2 rounds was from taking too many medicines orally, especially the bicarbonate during MTX round 1, and the cocktail of nausea/pain/constipation pills during IFEX round 1. Tomorrow she will get a 5 day nausea patch (Sancuso) that should help keep the nausea down during MTX round 2, and we know now that if she feels seasick again what to do. I hope that between the patches and the IV drugs there won't be as much need for pills.

As far as the pain goes we had a scare, when on the first weekend home her back and shoulders started hurting. We both thought that the cancer was back with a vengeance, but a call to the on-call nurse Ulysses at Cedars reassured me: after IFEX your white blood cell count drops, so just before you go home they give you a shot of Neulasta to stimulate the bone marrow (which is of course in the bones!) to make white blood cells. He suggested Advil, and it worked rapidly to reduce her pain, and her white blood cell count recovered very rapidly. The last 3 days Radhika's pain has slowly been coming back again, but it is still nowhere near where it was 3 weeks ago. It is time to go for the next round.

One thing that makes me very happy is that thanks to Leticia we now have an apartment in LA for 8 months that, thanks in large part to Vivienne, Leticia, Kent and Marie, is already fully furnished and equipped. We only saw the outside the day before we left from Cedars 2 weeks ago, but Leticia has described it so vividly to me that I am really looking forward to seeing it. I know they have put a lot of thought and effort into making it a home away from home for us, which will give us the chance to recuperate between treatments.

Another nice thing is that our friend Latha just arrived for a week (she will take care of Mira while we are at Cedars), and then Kali will come for a week, followed by Anurag, and finally Radhu (all of whom will stay for a week to get me to the end of the semester.) We don't exactly know yet what the treatment plan will be, but I think that if the MTX this week is successful, then next week there will be MTX as well, followed by IFEX (it would be a reduced dose, like what she was getting at the end last time) or ADR the week after that.

Tax day today has not been kind to us, but that was more than made up by the fact that Radhika has no water in her lungs. It isn't always easy right now but with friends like you we know we can make it!

Thursday, April 7, 2011

Andre’s update, Round 3: Ifosfamide (IFEX).

Round 3 was a long one: we drove to LA on Tuesday 3/29 and we returned home Wednesday 4/6.

Tuesday 3/29 was a long day of teaching for me, but it felt like a relief: I had been teaching 3 courses this semester, but the weekend before Round 3 started I realized (with Radhika's help ... what would I do without her?) that I can't keep my sanity while teaching 3 different preps, so I decided to take a 20% pay cut and drop one of my courses, Math 115 College Algebra. I am very thankful that our chair Rick Fierro and our Dean's office made it all happen on short notice, and that Michael Santana (who will start his math PhD at our alma mater, the University of Illinois in the Fall) agreed to take on this course. God bless all of them and Olaf Hansen who had been subbing for me in 115 until then. I think my students will all be better off this way too. Overall I can’t speak highly enough of how everybody at the University has been helping out (Brooks Reid and Michael Santana have also been subbing in my other courses) in ways big and small.

So teaching 115 that day for the last time felt like a relief, and the drive to LA went OK. The first day of the treatment wasn't too bad, but soon enough the problems started: nausea, pain and constipation. Things got gradually worse, until the weekend physician, Dr. Natale, prescribed a Fentanyl patch for the pain (rather than the oral medicine she had been getting before): the patch meant no more juggling pain meds against nausea, and her pain has been mostly under control since then. After 6 days (Tuesday-Saturday) she finally had a bowel movement again (the MiraLax suggested by the pain doctor, Dr. Wolcott, helped) and that took care of one part of the pain. Not having to take so many pills any more helped the stomach as well, and the constipation hasn’t been a problem since then.

IFEX works by constant Infusion (20 hours per day) and that part was OK for the first 2-3 days, but then it got increasingly harder: she had a lot of nausea over the weekend, and she got increasingly weaker. On Monday she got her last IFEX pump, but getting her into the hospital was more and more of a challenge. On Tuesday, when we went to return the IFEX pump I didn’t think about getting her a wheelchair to the curb, but instead she almost collapsed on me in the lobby. Thank god that the receptionists at Cedar Sinai are really nice and brought out a chair for her. I thought that just the thought of getting rid of the pump and the accompanying humming noise would make things easier for her. But the Mesna rescue drug she got that day just weakened her more, and that night we slept no more than 2 hours at a stretch. Wednesday she went to get more hydration and a scheduled shot to boost her blood count, she could barely walk, but that’s what wheelchairs are for. They gave her an IV with Reglan and Benedryl to combat the nausea and she also has been taking Ativan under the tongue for break through nausea, and that did the trick to get her home on Wednesday. She was so eager to get out, and just the fact of being on the road home gave some relief to both of us. Radhika also has two nausea patches: one that replaced the Zofran, a strong oral antinausea drug, and the other one behind the ear that deals with a motion sickness nausea she has developed (whenever she got up or turned in bed she got seasick.) We still don’t really know why Radhika has THAT much nausea (MTX and IFEX are not “supposed to do that”), and the only thing we have heard is that young women typically experience more nausea, especially if they had problems with morning sickness, like Radhika did with Mira. Of course Treigh had no such problems, so we hope that things will get better for Radhika.

Being home has been a relief (Ranjeeta had made some Indian comfort food for Radhika, rice with daal), with the only sad part being that my sister Hannah had to go back to Germany yesterday (Thursday). Hannah still did all our laundry on Wednesday night, I really couldn’t ask for a better sister, especially with the way she looked after Mira during Mira’s Spring Break. Radhika’s healer friend Ruth did a Reiki/massage session with her Wednesday night, so despite our crummy bed (we really need a better one), Radhika slept reasonably well that night. Yesterday Janet McDaniel (thanks again for the lemon and the roses) drove Hannah to the airport, Mira spent the day with her friend Emily, and Marcia (god bless her soul!) spent the day with Radhika so I could go to campus to teach my classes and catch up with some other school work. Marcia said that she had an OK day taking care of Radhika, but I think it takes somebody who has had to deal with cancer before, to be ready for the nausea, depression, and fatigue that Radhika is going through. Thank god the nurses and doctors all said that after a few days these side effects of the chemo will improve, so next week should be a lot better. She is currently getting a home nurse (Patricia from Coram health services) to take her lab work and give her hydration, and not having to go anywhere for the next few days should help too.

Another item worth reporting is that Leticia has come through wonderfully and found us a beautiful, well maintained 1 bedroom apartment on 5669 San Vicente Boulevard, a mere 5-10 minutes (depending on the lights) from Cedars. Radhika and I already looked around in the neighborhood, and the area has good energy. The apartment has a garage, ceiling fans, AC, hardwood floors, and a balcony, for $1425 a month. We already put a deposit down and the lease will start on the 15th. Thanks also to Vivienne Bennett (who will help Leticia getting the apartment furnished), to Leticia’s husband Kent who drove around with her to look at places, and to the wonderful people at Loyola Marymount who got Leticia in touch with the realtor Julia Kuleck (the wife of the Associate Dean of graduate studies in the College of Science and Engineering at LMU) who was the one to make the contact with the landlord (who seems very nice as well) and helped Leticia negotiate an 8 month lease, instead of the usual 12 months. Thanks also to the people at the Vedanta Society in Hollywood, who gave us a home for these past 3 rounds.

Looking ahead we are glad that Radhika’s friends Latha (4/17-4/24) and Kali (4/23-4/30) will be able to come and spend a week to help Radhika and me cope around the house and with everything else that is going on. After that her cousin Radhu will stay a week, followed by Anurag, and this should be able to get me to the end of the semester without going crazy. Once that is all over we will have a much clearer idea of how the summer will go (especially after Mira’s school gets over.)

As far as Radhika’s treatment goes, they are checking her blood values twice a week, because with IFEX one expects a drop in white blood cells about a week after the treatment, which should then recover in another week or so. Her next round will start on a Wednesday (either 4/20 or 4/27) and it will be a short round (2-3 days) of either Methotrexate (if all goes well) or Adriamycin. The issue is the fluid in her lungs: even though they did not find high values of MTX in the 350 ml they removed the week after round 1, Dr. Forscher is concerned that this could happen next time. MTX is given in very high dose and it is important that its levels go down exponentially fast after the first day; if the MTX builds up somewhere and then seeps back slowly into the body, this could be dangerous. So the plan is for Radhika to get a chest x-ray on 4/19 and if there is no fluid in the lungs, then MTX should be safe; otherwise she would receive ADR (which is the harsher of the two drugs, because it can affect the heart.)

Thanks again to all of you who are sending love, help and prayers our way on this journey!

Marcia, the Cat Lady

Radhika made me write that title. She wants you to know:

I'm back now, but was at Cedars for 10 days and took the Ifosfamide treatment - the worst of all the treatments. It's the longest. I have to wear a fanny pack for seven days and it makes me feel tired and sick. I got home Wednesday evening. I plan to feel better tomorrow after having some IV liquids.

I'm sorry to have missed the colloquium, and I miss everybody. I thought blogging would be a good idea, but that was when I was feeling well. I may not be able to blog regularly but I will try to now and then with help. All of our energy is being directed to healing.

Andre will try to post something soon about the treatment.

Thank you for all the presents and good wishes and food. We love you all. Keep us in your thoughts.