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!

5 comments:

  1. Thanks, Andre, for your post. I know it's one more thing for you to do, but I really appreciate the details.

    Marie

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  2. Andre, I think of you and your family often and sincerely appreciate you taking the time to let us know what is going on. Give Radhika another hug for me, if there is anything I can do I hope you will let me know. Best regards, Janet

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  3. Radhika and Andre: I think of you constantly, really. Know that you are surrounded by people keeping you in their thoughts, hearing the pain, knowing the challenges you face, wanting to give everything we can, wishing we had magical powers to ease the suffering. We are here for you. Love, Vivienne

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  4. Andre and Radhika, How great to hear that so many new and long-time friends and colleagues have stepped up for you. You realize that this is due to who you are and how we all feel about you...right?

    I so enjoyed meeting Hannah last week. We had a great chat en route to the San Diego airport. I enjoyed talking about the Kundgen hometown of Trier, a historic city in the Mosel River valley with the oldest still-standing town gate in Germany. Trier has a bang-up wine festival each year. Although it’s been 20 years, I have fond memories of taste-testing many glasses of Riesling during the festival. I wonder if Andre and his siblings were among the youths hanging around the edges of the town gate then! Hannah and I also visited about lovely Mira (all credit to her parents!). Hannah had a super time playing Auntie, though we laughed when Hannah observed that Mira has learned the time-honored phrase, “Oma (Grandma) lets me do that,” whenever Auntie was inclined to say “No.” I’m sure we all recall pulling out that chestnut when we were kids.

    I want to say Thank You for allowing us to be part of your support group, R & A. It’s such a helpless feeling to know that it’s too late for me to go to medical school and get an oncology license…so what good can I possibly be for you? It’s a gift that you are letting us do these little things to contribute to your well-being. Last year I was in the painful situation of watching a “go-it-alone” friend who wouldn’t let any of us provide this kind of help. I know you want to say “Thank You” to us, but we really want to say “Thank You” to you. I really appreciate you inviting us in so that we can act on our frustrations and anxieties--and our friendship--by doing support stuff at CSUSM, at home, and in LA. Love, Janet McD

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  5. I second everyone's appreciation for letting us be a part of this journey via such thoughtful posts. Thinking of you all always, Kim

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