Andre: The latest and last big round, ADR 2

Dear friends,

Radhika and I returned from her last round of Adriamycin last Thursday (11/17) night and I realized that it has been over a month since I wrote my message to fill you in on the events surrounding Ifosfamide. Since then Radhika wrote about the round MTX 10 and the scans and emotions that went along with that (10/10-12). I have been silent so long, since with Radhika’s parents in town I had some time to unwind and take it easy with my responsibilities. Just the fact that Hema took care of the cooking, cleaning and laundry was really nice. Also Radhika had a good time talking with them and the energy around the house was positive. It was a marked contrast to Radhika’s surgeries 5 years ago, because when they visited at that time, the atmosphere was a lot tenser. I think we have all mellowed since then, and they were wonderfully supportive without being suffocating. That must be pretty tough when your daughter goes through an ordeal like this. I really appreciate them for all they did, especially taking good care of Mira while we were at Cedars for MTX 10 and 11. I also appreciate all our wonderful friends at the University, and I want you all to know that Radhika has enough CATASTROPHIC LEAVE donations to last her through the rest of the semester. Gabriel from HR is currently looking into what Radhika’s options are for the Spring semester, but all that can wait for another month.

So what did I do in that time other than driving Radhika to her various appointments? I spent quite a bit of time playing online Fantasy role playing games, sometimes with Mira, but more often alone. It really took my mind off of things, so my stress levels decreased and my back stopped troubling me for a while there. I feel in better shape again physically to deal with things, and I am even able to volunteer in Mira’s school once a week. We also continued our home improvements: we bought a new couch, a new vacuum cleaner, and we got nice blinds to complete the look for the living room. Other than coffee and end tables the living room is now pretty much done, and we are happy that Radhika’s parents got to see it before they left. We still need to hang up some pictures around the house, and then it will be on to our last major project: the kitchen. Radhika has some ideas for it already, but we just ran out of steam for a while. Knowing her we will be onto that one again soon.

Now just to fill in some details since Radhika’s 10/12 post. MTX 11 (10/24-26) was not quite as good as MTX 10, as Radhika was a bit more troubled by nausea and constipation. I think this is largely due to the fact that she didn’t get a colonic right before and undoubtedly we were still mulling over the results of the scan. After MTX 11 things got very busy: on Thursday 10/28 Radhika’s sister-in-law Sangeeta arrived from a meeting in LA and we all went to the San Diego airport to pick up her daughter Dipali, who is a senior in high school and we had dinner in the gaslamp. Sangeeta and Dipali then went to pick up Radhika’s brother Mukund from the airport, whereas the rest of us went to bed. Friday Mira went to school, while the rest of us spent the afternoon in Encinitas. Mira had a great weekend with her family: Friday afternoon Mira, Mukund, Sangeeta, Dipali and I went to her schools Halloween party, and in the evening Radhika’s cousin Navaneeth arrived from Toledo. Saturday started out with a nice brunch at our house followed by Mira’s last soccer game and the after game party (we skipped Gymnastics), followed by Ranjeeta’s Diwali party. On Sunday, Navaneeth, Mukund, Sangeeta, and Dipali all left for Ohio again. Unfortunately Radhika, Ram and Mira, came down with a cold with fever that day. Even though Mira is resilient it took her almost 2 weeks to fully recover, and I was quite concerned about Radhika and Ram. Ram recovered well enough that he and Hema wanted to fly back to India on that Thursday 11/3 as scheduled. Building up to that we decided to take it easy, except for some low stress Halloween activities with our neighbors Joe and Julie. Mira, Radhika and Ram did pumpkin carving at their house on Sunday, and on Monday Radhika, Mira and I had dinner with them and their friends, after which Julie and I took Mira and Jacquelina trick or treating in the neighborhood, while Radhika and her parents stayed home to hand out candy. Monday morning Janet McDaniel also stopped by to reveal her identity as the birthday greeting instigator, and we shared several good laughs. The next 2 days where spent resting until on Thursday Radhika and I drove her parents to LA airport. They arrived in India in good condition and from what I heard Ram has since fully recovered as well.

The day after Radhika’s parents left the weather turned really miserable for a week, after having regaled us and our guests with mostly good weather the week before. Radhika was scheduled to start her big round of Adriamycin on Monday 11/7, but in the shape she was in that was not really an option, so that we rescheduled it for Tuesday 11/15. Her infection turned out to be quite persistent, and her fever consistently spiked up to 101F (indicating that this was viral, and not bacterial) as late as the 13^th, so I was worried that we needed to reschedule again. But Radhika was determined to get it done and fortunately her fever has disappeared since then. One problem was that Radhika’s back muscles (especially shoulder and left side) have really tightened up pretty badly since her parents left, despite her getting several massages from her friend Ruth. The week before Adriamycin the pain was also radiating down into her left arm, and that freaked both of us out since the cancer started rearing its ugly head last year through nerve pain in her right arm. However, when I called the Cedars Infusion center on Friday 11/11 to get instructions about the fever they reassured me that it was unlikely that this pain was caused by a tumor at this stage. Nevertheless, we made an appointment with our friend Jennifer for Monday 11/14 late afternoon, at which it turned out we finally also met her orthopedic surgeon friend Chip who had set us up with the Mayo Clinic and helped us through the emotionally tense early stages until we settled on the treatment at Cedars. They both examined Radhika thoroughly and agreed with Cedars that it is unlikely to be cancer at this stage (which is what her acupuncturist Christine also said), but that she had tight spots all over her back. Monday 11/14 also saw parent-teacher conferences at Mira’s school, so in the morning we watched Evan and Milla so that Juliana and Michael could go to their conference, after which they picked up the 3 kids from us, so we could go to Mira’s conference (which went well, we are happy with her teacher and her report card) and then to acupuncture before picking Mira up again to go Jennifer’s.

On Tuesday 11/15 morning we dropped Mira off to school in the morning, and she spent the week with Ranjeeta, who as usual took great care of her until I picked her off from school again on Friday afternoon. When we got to Cedars, we had requested that Forscher and Susan would see her for her arm pain, and they also both said that it was unlikely to be the cancer (I think I have personally heard it from enough people now to believe it), but Forscher was concerned that it may be caused by the PIC line in her left arm, which is what we suspected as well. However, a Doppler test came back negative, and Forscher decided that the best thing would be to watch it and only do further testing (such as an MRI) if the pain continued for too long or got worse. At any rate, even if they thought that it was the cancer, the answer would still be continue the rounds as planned. Because of the testing the 48 hour continuous ADR infusion started only after 6PM on Tuesday, which also meant we would only get out that time on Thursday.

All in all the round went OK after that, but I can’t help feeling that it would have gone better if she didn’t have to cancel her colonic before it again due to her fever and fatigue. There isn’t much to report from the round itself, since Radhika was so fatigued through it that she slept most of it away. On Tuesday night (per Radhika’s standing request) they gave her the usual heavy anti-nausea infusion of Benedryl / Reglan / Composin / Zantac / Decadron on top of her Sancuso patch, and it flat knocked her out for 16 hours or so. Since we didn’t have to go anywhere on Wednesday (no labs, just watching modern family on DVD and a quick run to Whole Foods for late lunch/early dinner) that was just as well. When she woke up that day she said that she slept like a log and the pain in her arm was gone. Fortunately there wasn’t too much nausea either, just the fatigue, so Radhika went to bed early again, and slept in long on Thursday as well. We kind of dragged ourselves through it all, Radhika got disconnected from the ADR pump by her favorite male nurse Wes at 6PM on Thursday and after some awful traffic on La Cienega we finally got back home just before 9PM. The next day, Radhika went for acupuncture in Encinitas and her Neulasta shot in Vista, before picking Mira from school at 4PM for her counseling appointment with Kathlyne.

Radhika has been in recovery mode since we have come back, but her progress has been slow. She had a lot of stomach pain until yesterday, primarily from the chemo attacking her stomach lining, but also from constipation which of course led to nausea as well. Radhika had no bowel movement for a week after the start of ADR, but it seems like colonics on Saturday 11/19 and Monday 11/21 have helped, and she has another one scheduled for tomorrow, Friday 11/25. Yesterday was also the first day she was eating close to normal, and we try to go for at least one short walk a day to keep her on track. The fatigue continues to be a problem though, even though we went to acupuncture yesterday, and we have another one scheduled for Monday 11/28. It hasn’t helped that since Wednesday 11/16 her sleep has become very disturbed with vivid bad dreams, and the arm and back pain have come back. She had massages from Ruth on Saturday and Tuesday, and another one from Amy at massage Envy on Sunday, but they only help for so long. My guess is that after the stomach is better, and the fatigue has gone and she can do more for her body again, like walking and maybe some gentle Yoga, her back will also get better. Until then it is one day at a time. Oddly enough Radhika is also having a heavy period since Sunday, but even though that tires her out I look at it as a way for her body to rid itself of the Adriamycin.

Looking forward, we are going to take it very easy through the weekend, because now is the time when her white blood cell count is expected to dip. It was fine when the CORAM home health nurse Laura took her labs on Tuesday, but they say 7-14 days after a big round you have to expect this, and of course it leads to her feeling down and lethargic. So unfortunately we had to cancel our Thanksgiving plans at Janet’s house today, but it is just too risky that she falls sick again, like after the Diwali party. On the bright side, Forscher informed us at the start of ADR on 11/15 that he was planning to forego the last big round of ADR+CSP. So as of now Radhika has only 2 more (small) rounds of MTX and the regimen will be over for her before Christmas. This is a great relief for us, because Radhika really did not want to do that round, since last time she felt so bad for so long afterwards (see my first blog entry from July). Forscher says that instead of CSP+ADR he wants to do a PET scan at that time and decide the next steps based on the outcome. I am looking forward to a new year that will hopefully not require any chemo therapy. Currently the last two rounds are scheduled for Wednesday 11/30, and Monday 12/12, with the PET scan on 12/14, but that is all very tentative. One advantage of that schedule is that it ends before Mira’s winter break (12/17-1/8) and we hope to be able to go to Hawaii for a week sometime during that. However, we do want Radhika to recover well before going on those rounds, and Wednesday may be a bit too optimistic. But again, we are taking things one day at a time, and we will try to enjoy the day today and give thanks for the healers, friends and family that have helped us, and are still helping us in these challenging times.

HAPPY THANKSGIVING,

Andre, Radhika and Mira