Tuesday, February 14, 2012

529 for Mira and webcast link for memorial

Dear friends,

a quick update on two items people have been inquiring about:

The link for the live stream for the Memorial on Friday 2/17 from 6-8PM is

http://www.csusm.edu/iits/support/mediaproddel/streaming/live/radhika.html


The first 15 minutes of the event will allow people to mingle, get some food and find their seats. We plan to start the webcast between 6:10 and 6:15, and the actual program by 6:20. This allows people who want to view the event live but from a distance to tune in without having to worry that they miss the start. The live stream will also be archived, so that we can make a DVD for us as a keepsake. From what I understand there will also be access to the live stream somewhere online for the next few days after the event, so that people who missed it can still watch it. I will post another link here in case it is different from the live links above.

Another issue is that of donations. While I am happy if people make a donation to their favorite charity in honor of Radhika, some people have asked to be able to do something that helps us directly. For this purpose I have set up a 529 College savings plan for Mira. There were many options, but in the end I opted for the Socially responsible portfolio from the California plan that is run by TIAA CREF. To make a donation you can write a check (there is no minimum) out to

Scholar Share College Savings Plan

and put the account number

2933-203472

in the FOR line on the check (the - needs to be there!)

There will be a collection box for checks at the memorial on Friday or you can mail your check directly to:

ScholarShare College Savings Plan
PO Box 55205
Boston, MA 02205-5205

Another option is to use this information with the bill paying system of your bank.

I want to conclude this blog entry by sharing two pictures with you. The first one should have really gone with my last blog entry, because it shows Ruth and me just after we got back from spreading Radhika's ashes. The second is one of my favorites. Radhika took it of herself while she was in College in India, and you can consider this as a preview of the pictures of Radhika you will see at the event.




Saturday, February 4, 2012

Memorial update

Dear friends,

a few announcements regarding the celebration of Radhika's life on Friday, February 17:


The event will be held from 6 to 8 p.m. at the Clarke Field House, the biggest event venue on the CSUSM campus. (See www.csusm.edu/news/articles/RadhikaRMemorial.html for the campus announcement.) I had originally hoped that the event would be a bit earlier in the day, but there is a conference at the Field house that day, so this is the best we could do. On the bright side, this will allow people who work until 5 plenty of time to get there.

In spite of the time this won't be a dinner, but refreshments will be served courtesy of the University. We have no idea how many people will come from the University, our friends, family and other people Radhika touched. So it is important that EVERYBODY sends an RSVP using the following link (it just asks for your name and the number of people in your party, so do it NOW!):

www.surveygizmo.com/s3/799025/Radhika-Ramamurthi-Memorial

Parking will be provided for free as well, in the parking lot right next to the parking structure (Lot N in the top right corner of the map www.csusm.edu/parking/images/map.pdf ), but members of the campus community will probably find it easiest to park in the garage itself. If you don't have a CSUSM parking pass, but want to park in the garage anyway, then you would have to pay for that at one of the machines in the garage.

There will be a short program, but it hasn't been decided yet who the presenters will be. If you want to be included in that part of the event, then please email Ranjeeta Basu ( rbasu@csusm.edu ). There will also be an "open mike" at the end for those of you who want to decide last moment if they want to speak.

OUT OF TOWN GUESTS: If you come in by plane and want to be picked up and dropped off at the airport, please contact Marcia Woolf ( mwoolf@csusm.edu ). Also contact her if you would like to stay at somebody's house while you are in town. Make sure to give your exact travel dates and information about the members of your party (number in your party/Male/Female/Children/Special needs.) There are two reasons why we are offering this rather than just pointing everybody to the nearest hotel: For one, coming here at short notice may already be expensive for you and San Diego is beautiful, but not a cheap place to stay, so we want to make this financially easier on you. More importantly, the people you'd be staying with will also have known Radhika, and this will be a nice opportunity for you to connect with somebody else who really cared about her.

LOCALS: If you are willing to go to the airport to pick up or drop off out of town guests, or if you have a spare bedroom you can offer to out of town guests, then please also send your information (available times/beds/restrictions) to Marcia Woolf ( mwoolf@csusm.edu ) so that she can connect you with an out of town guest.

IF YOU CAN'T ATTEND: Don't worry, our technology folks at the University have a lot of experience with life webcasting events of this type, and I will make sure that there will be a link on the blog. The event will also be archived, so that Mira and I will have a lasting memory of this day.

Wednesday, February 1, 2012

Radhika's ashes

Dear friends,

I want to share some events of a spiritual nature with you that give me great comfort about Radhika's passing. Being a Hindu, she firmly believed that we live in this world to learn certain lessons so that our spirit can advance. She also believed that death is just an intermediate stage and that we get reborn in another form so that our spirit can continue to grow and have new experiences. All this is beautifully expressed in the verses Mukund read from the Gita which I shared with you in my last post. In the last few months Radhika also told me on a number of occasions that she felt that life as a woman was hard but rewarding (giving birth to Mira), so in her next life she wanted to take some time off and come back as a big fat male sea lion. As such, her plan was to spend the days lazing in the sun at La Jolla's childrens pool, where we could come to visit whenever we wanted to see her.

The healing started for me when her childhood friend Kalika told me after Radhika's passing that one of her spiritual guides had said to her even before the last round of chemo that Radhika had finished all her lessons for this life and was ready to move on to her next life. Also Radhika's mentor Ruth told me that she knew Radhika's spirit was not dwelling on this past life anymore and was roaming freely.

All this brings me to yesterdays events. After dropping Mira off at school and bidding farewell to Radhu and Venki, the house felt quiet as I waited for Ruth. Ruth is very calm and spiritual, and I was happy that she was going to accompany me and Radhika on this final journey for Radhika's empty shell. I should mention at this stage that Radhika was an organ donor, and even though all her organ's had been ravaged by the cancer and were unsuitable, her corneas were accepted for donation. It makes me happy to think that her beautiful eyes continue to live and that their sparkle brings joy to somebody else.

At 9AM Ruth and I discussed the plan for the day and then we went to Vista for the cremation of Radhika's body which started at 9:45. We placed flowers, 2 coins, some rice and a piece of sacred wood on her paper coffin which symbolized joy, prosperity, nourishment and spirituality. It felt very peaceful as the conveyor moved her body into the machine and the burners started without any sound. The plan was to return after 12 to pick up the remains and spread them in a beautiful place that was meaningful to her which meant the ocean either off the coast of Encinitas (a city she loved in this life) or La Jolla (where she wants to spend her next life).

So we went back home to google for Kayak rental places, since Radhika loved kayaking on the few occasions when we tried it. Since the ashes were part of this life we first tried calling in Encinitas, but our calls where either not returned or came up empty. Also Ruth was a bit worried about going out 500 yards from the coast line (as required by the law) since neither of us had ever done any real ocean kayaking. Curiously enough the first place we called in La Jolla said that this wasn't a problem as long as one went out on a calm day like today. After lunch we received a phone call from the crematorium that the remains were ready, so we went in Ruths car to pick them up, and then drove straight along Palomar airport road to the ocean, a drive Radhika and I have done many times. We then went straight south along the coastal highway 101 to Encinitas were we stopped at the meditation gardens so that she could see the ocean off of Encinitas for the last time in this life and we also lingered a bit at one of the koi ponds. We continued our journey on the 101, Radhika's and my favorite road on this planet, until we reached La Jolla.

We easily got to the kayak rental place by 2:30, and Ruth and I set off in a double kayak straight from the launch area. The ocean was beautiful, with no waves, sunny sky, nobody around us anywhere and only the slightest breeze: a gorgeous day for kayaking! Ruth and I really enjoyed it and we hardly got wet. After paddling out for a while Ruth said that she saw something in the water, maybe a dolphin. Upon closer inspection it turned out to be a single seal or sea lion. I knew that we were in the exact right place, and that Radhika was indeed ready to move on. After I gave her a short eulogy to thank her for all the good she did in this life for me and the people around her I dispersed her ashes. We enjoyed the beautiful location for another short while and by 3:30 we returned the kayak. The kayak rental place refused any form of payment, but at least I was able to tip them.

After that Ruth dropped me off at home, so that I could go and pick up Mira in order to take her for gymnastics with her friend Cassidy. I chatted with Cassidy's parents Chris and Cindy for the whole 90 minute class, and at the end it struck me how peaceful my day had been. I only teared up once when telling Ruth a story that was particularly gut wrenching for me, but I never shed a tear. Somehow I felt elated and happy for Radhika that she had moved on and was ready to embrace her next life with open arms, just like she had embraced this life with us over all these years.

Monday, January 30, 2012

Memorial event on February 17

Dear friends, just a quick update to let you know that Mira and I are doing well. Radhika's brother Mukund, his wife Sangeeta and their daughter Dipali were here to support us until last night, and Mira had a great time playing with one of the many iPad's that were all of a sudden in our house. She was a bit unhappy about going to school this morning, but had a good day there in the end. Radhu and Venki are staying here until tomorrow morning, and after that Mira and I will make our first attempts at our new normal. With so many people offering their support I am sure we will be OK in the long run, and in the mean time we will keep ourselves busy.

Several people have asked about memorial services. Yesterday we paid our respects at the Shiva Vishnu temple in San Diego, and Mukund, Venki and I also went to the funeral home in Vista where Mukund read the following verses from the Bhagavad Gita at her casket:

The soul never takes birth and never dies at any time, nor does it come into being again when the body is created. The soul is birth-less, eternal, imperishable and timeless and is never destroyed when the body is destroyed.

Just as a man giving up old worn out garments accepts other new apparel, in the same way the embodied soul giving up old and worn out bodies verily accepts new bodies.

Having gained the realization of the Ultimate Truth, one is never again deluded and even at the moment of death, being situated in this state, liberation from the material existence and attainment of the Ultimate Consciousness is assured.

Tomorrow morning at 9:30 Radhika will be cremated, and I will spread her ashes off the coast of Encinitas or La Jolla. There will be no further religious services, since Radhika's father has performed all the necessary rites in India. However, to celebrate the life she just concluded and to wish her well in her next life we will have a secular memorial event at Cal State San Marcos on Friday, February 17 at around 4 PM. More information will be forthcoming about this event, but I just wanted to put it out there as soon as possible, so that people who plan to come from out of town have plenty of time to make travel arrangements. I hope that we will be able to help out with local transportation and accommodations, so that for now you may just want to look into plane tickets. There will also be a webcast of the event for those of you who can't be present, but want to witness it anyway.

Friday, January 27, 2012

The end of the journey

Dear friends, at 1:45PM on Friday, January 27 2012, my wife and best friend Radhika Ramamurthi took her last breath. She passed away in the intensive care unit of Cedars Sinai medical center after the struggle against cancer got to be too much for her lungs. Mira, Radhika and I appreciate the support we have received from all of you on this journey. I feel fortunate that her cousin Radhu with husband Venki could be in LA with me when it happened, and they are giving us the support we need in this tough time. As we will need a few days to process what has happened we would appreciate not getting any phone calls in the next few days. If possible I will post additional information on the blog. Andre and Mira

Sunday, December 25, 2011

Andre: Chest CT, MRI and Thoracentesis

Dear friends,

The week before Christmas was not a good experience for us, but it is behind us now, so I can finally chronicle it and get it out without feeling like I am spoiling the holidays.

On Friday 12/16 Bob helped me get our VW in for an oil change while Radhika was in full recovery mode from the MTX 12 round we got back from the previous day. She visited Jen for the pain in her back, and Christine for acupuncture, but she felt down. How she reacts to having people around her is somewhat unpredictable these days, but seeing Stephen for dinner that evening cheered her up. During the night however the pain got worse, and she was feeling it in her chest and arm again, so that I got worried that something else might be wrong. Saturday morning Mira and I put up our Christmas tree and then went to her Gymnastics for the last time before they closed for the year. When Radhika hadn’t improved much I called Cedars around 3PM. Unfortunately the nurse Anita was not terribly helpful other than insisting that with chest pain one should go to the ER, and even if we were at Cedars she'd send Radhika there. This was something we didn’t want to do since we had visions of people in agony and horrendous wait times. We also called the CORAM nurse, and Jen, and they all said to go to the ER and that with chest and arm pain the wait wouldn’t be so long. With that assurance and Mira playing with Jacquelina next door, we got to the ER of Palomar medical center in Escondido around 4:45PM. The paperwork and triage went very quickly and since Radhika is immune compromised they immediately pulled her from the main waiting room to a quieter room, and within half an hour she had her own room and they started their tests. An EKG came back fine, and a chest x-ray did not show any heart problems either, but it showed water in her lungs. The physician was very attentive and discussed the results with us pretty much right away. We could have in fact been out before 7PM, but he had also ordered another ultrasound of the pic line since Radhika thought that that could be the cause of the pain. That department was just going through their shift change, and there was one more patient ahead of us, but by 8:30 she was discharged, since the test came back without detecting any problems. Since there was no imminent danger they let us go with a prescription of percoset to help with the pain. After a eating dinner at Rubios and filling the prescription in Escondido we went home to sleep. Mira was spending the night at Ranjeeta’s since we didn’t want to burden Joe and Julie with a 3rd child for the night.

Sunday 12/18 was overall a better day. Due to the percoset, Radhika had a better night and Mira came back home in good spirits as well. We had Papa John’s pizza for lunch and then went to Encinitas where Radhika had a colonic that went well and Mira and I played a card game in the Darshan bakery next doors. After that she even had the energy for a bit of Christmas shopping, and then she craved China wokery’s Buddha’s feast for dinner, so to Mira’s delight we did take out again. Our friend Ruth spent the evening with us helping me with the laundry and giving Radhika some Reiki.

We were only scheduled to go to Cedars on Tuesday, but since Radhika had another night with more pain than sleep, I called Susan at 9AM on Monday morning to tell her what happened over the weekend and that we were planning to come to LA a day early in hopes that they could move one of the tests up, especially that MRI that I just found out was scheduled for 5PM on Friday. So at 10AM I dropped off Mira with Julie at Sunset Park, and then at noon she went from Julie’s house to spend the next few days with Bianca and Matthew. We left after lunch and got to Cedars at 2:45PM and by 4PM her chest CT was already over. We met with Forscher who confirmed that there was fluid in the lungs, and that Radhika was going to have it removed via Thoracentesis the next morning for further testing. Among other things he was concerned that the fluid could serve as a reservoir and MTX could still be leaching into her body from there, a worry we found 2 days later to be unfounded. This did not worry us a lot, since we had been expecting it and she already went through one of these in March without any problems. He also told us that the cancer was unchanged or shrinking in all locations that had had tumor on previous scans, which was certainly good news. The bad news was that there is new Osteosarcoma growth at the top of her left lung, near her heart, in a region that was previously clear, and that this was the likely cause of her chest pain. We were dumbfounded, but decided to take things one step at a time, which meant that she had some blood drawn for the Thoracentesis at 5PM, then we went to have some good Brazilian barbecue for dinner at the rather frigid Farmers market on Fairfax. From there we went to our apartment, called Mira at 7PM and started watching a fun movie called “Galaxy Quest” on DVD. We were exhausted and in bed by 8:45PM, but by 3:45AM Radhika was awake again and in pain. We tried several things, but what finally helped was watching some more DVD and we were able to sleep again from 6-8AM.

Tuesday 12/20 we got to Cedar's Imaging center at 9:45AM to check in for the 10AM Thoracentesis, but by 10:15 it turned out that the wrong labs were taken the previous evening. So we went back to the cancer center to take the right labs, since they get things done a lot more quickly than the imaging center. By 11:30 she had her bed in the imaging center observation room, and was told that they would do the procedure right after lunch at 1PM. We watched the old Schwarzenegger movie “Kindergarden cop” while we were waiting. The doctor was pretty busy and we probably only got this scheduled that day thanks to Dr. Forscher arranging it. Nevertheless the wait was worth it, and at 2:30PM they removed 300ml of a reddish fluid in a 5 minute procedure. Even though the fluid didn’t look nice we found out 2 days later that there were no malignant cells in it. Interestingly, as opposed to March I was allowed to stay for the procedure this time. The lab tech said that they primarily send care givers out because they don’t want them to pass out (something that apparently happens much more often with male care givers) and then hit their head as they go down, which happens often when people pass out, and have to go to the ER. I guess I must have been more calm and seasoned now than I was in March when things were definitely much more desperate, even with the news from the Chest CT. After the procedure Radhika spent some time in the recovery room, where they took a chest x-ray to confirm that the procedure was a success, and by 3:30PM Radhika was discharged from the imaging center. Thankfully the imaging and cancer centers are right next to each other, because next we went back there and by 4PM a nurse had removed Radhika’s pic line. It was a triumphant feeling for her that after 9 months of chemo she didn’t have the line anymore. All in all Tuesday was a positive day, and we went for dinner at Maggiano’s Italian restaurant near the farmer’s market from 5-6PM. At 7:30PM we were in bed and slept with several interruptions until 7AM the next morning.

Wednesday 12/21 I called Cedars imaging as soon as they opened at 8AM to see if they had any openings to reschedule the MRI from Friday, and we got lucky that indeed they had an opening at 3:30PM. Unfortunately this still meant that we wouldn’t be able to discuss the results with Forscher in person that day, but at least it gave us the possibility of driving home right afterwards and not having to come back for more tests. Unfortunately by that time the Percoset had started causing constipation in Radhika again, a problem we had hoped to leave behind, so that I called Dona to confirm a colonic for Radhika the next day and I also went to a pharmacy to buy a Fleet Enema for relief. Even though this wasn’t easy for Radhika, she also decided to go back on the Fentanyl pain patch for the first time since July in order to minimize the need for pain pills. I spent the morning being with Radhika, making phone calls and doing some packing and clean up, but everything went slowly. After lunch I started loading the car from the apartment for the last time, as we had decided to vacate that day. Everything went smoothly and we were able to check in for her MRI right at 3:30PM. The MRI itself was a hellish experience, but not as bad as the one in March when she was in so much pain that she couldn’t take it at all. This MRI was a 4-part scan of the upper, lower and middle back in that order, and it required her to lie still for about an hour while the machine was droning in her ears and making her sweat. Halfway through the upper back she said already that she was in too much pain to continue, but the tech made it more bearable by playing music and allowing me to hold her feet. After the upper she said that she’d also take the lower, but I didn’t think that she would be able to do the middle as well, as it was the longest. I really don’t know how she made it through that, but I felt a great sense of relief that we were able to go home right afterwards. We left Cedars at 6:30PM and stopped halfway home to meet Leticia and Kent and give them the key for the apartment, so that they could go there the next day to clean up, have the furniture picked up by the rental agency, and return the key to our landlord. I think they were a bit shocked to see the state Radhika was in after the MRI, and I felt bad for that after all they had done for us. We reached home by 9PM, and by 10:30 I had finally wound myself down enough to be able to sleep. By 2AM her pain woke both of us up again, and from 3-4AM we were watching an Eddie Izzard DVD before sleeping again until 6AM.

Thursday 11/22 found us waking up in our own beds again, sort of beaten up, but relieved. At 8AM we called Susan and she helped us fine tune Radhika’s meds: instead of 1 Ambien at night (which knocks her out and makes her woozy), she is to take only 1/2 to help her sleep through the night, and we also increased the Lexapro from 1.5 to 2 per day to help combat the depression. Most importantly she told us that the 12mcg/hr of Fentanyl in one of the patches we still had from July was really a baby dose and that 50 was a normal starting dose for cancer patients with some patients on as much as 200mcg. We promptly gave her another patch in the morning, and one more in the evening, and as of today she typically has 4 of them on at a time to get her to the 50mcg she seems to need. Susan also told us that the hemoglobin count was only 8.1 on Monday and that she should do again what she did last time to up her blood values. At 10AM we talked to Forscher on the phone and among other things he told us that he wasn’t concerned about us going to Hawaii the first week of January, as long as everything was under control, most importantly he wants another chest x-ray before we go to make sure the lungs are still clear. At 10:30AM Bianca dropped off Mira from her 3 night sleep over, and as usual we felt grateful for one of our friends coming to our rescue again. On some level this whole process would be easier if we didn’t have a child, but the joy we feel when we see her again more than makes up for it, and she really gives Radhika something to live for when pain or depression trouble her. At 11:30 I dropped Mira off for a play date with her best friend from school, Cassidy, which enabled us to go to Encinitas for a colonic Radhika really needed, as well as some Christmas shopping at Gepetto’s. We also bought a good beef dish from Jimbo’s to bring up her blood values, as Susan had suggested. At 8:30PM we were all in bed again. In fact all 3 of us are typically in bed at that time these days, and our main problem is that Radhika and I often wake up 2 times a night and have a hard time falling asleep again. Radhika’s pain is fairly under control during the day (even though she may tire easily), but at night she can sometimes not find a comfortable position to sleep in.

Friday 11/23 started in a good way: the CORAM nurse came at 9AM to take her blood, and by the 10AM we already knew that her hemoglobin had improved from 8.1 to 9.5 (presumably thanks to Brazilian Barbecue, Maggiano's veal and Jimbo's beef) and that in fact all her other blood values her fine as well. To me this came as a great relief, since I had actually thought that as exhausted as she was, a transfusion would be unavoidable. Mira spent until 3PM with Cassidy again, after which time Ranjeeta picked her up. Radhika went to acupuncture and after that we did a bit more Christmas shopping. Ranjeeta then came over to our place with Mira and a dinner. Ranjeeta is a real saint: with all the last minute requests we have due to Radhika’s constantly changing condition, I am sometimes worried that she will get tired of being there for us, but if she ever gets exasperated she sure doesn’t show it!

The story of the last 2 days is simple: we have tried to enjoy the blessings of the Christmas season and to regain our optimism for the coming weeks. Radhika’s energy comes and goes, and because of the rotten nights she tires quickly, but she is typically in a good mood. Fortunately we already built the Christmas tree last weekend, and Radhika had made sure that there were enough Christmas presents under it for Mira to open on Saturday night. Mira and I also built the Ginger bread house from a Trader Joe’s kit, like every year. We did a bit of walking and visited some friends.

Our plans looking forward haven’t changed much: we are still thinking about Kauai for the first week of January (if her tests come out well) and then second opinions from NYU and MD Anderson, as well as potentially a chemosensitivity test from Tgen in Arizona, and maybe looking into alternative methods again. In the mean time we will definitely continue the acupuncture and colonics. We will use this blog to keep you all posted as we are making the next decisions, but if you don’t hear from us in the coming week or two you can look at this as a good sign, in that we must have gone to Hawaii :)

Tears for Christmas

Dear friends,

I hope you’ve all had a good Christmas and are enjoying a relaxing break. I’ve delayed writing and posting this entry because my news is not all good and Andre and I didn’t want to spoil the season. So, you are forewarned – if you are sick and tired of my journey and find that the scenery is not improving fast enough to warrant continuing on with me, then, stop reading. I would not blame you in the least – how I wish I had that option!

These past two weeks have been exhausting. Ever since my parents left, I’ve been plunged into a depression so deep that it has sucked everything out of me. I barely acknowledged the many loving greetings you all sent me for my birthday, I’ve ignored e-mail, and not wanted to talk to anybody. Right after Halloween, I came down with a flu. My coughing fits, that were already a pain, worsened, and then my back started hurting, mostly on the left side. Andre said it was probably due to my pulling some muscles while coughing, but my left shoulder blade kept hurting and the pain persisted even after the cough went away.

Then something happened to freak me out completely – I felt numb beneath my left elbow and on my left abdomen. I called Susan, she assured me that it was unlikely that it was the tumor, that it was likely to be the pic line or some peripheral numbness due to the tight muscles in my back. As Andre recorded, we saw Jenn and Chip, and they thought so too. Still, I felt uneasy. The pain brought back memories of last year, at exactly the same time, when my right arm started hurting. When we went for the Adriamycin round, I told Forscher about the pain and he had a Doppler done to check the pic line, but that showed no trouble. When we showed up for MTX three weeks later and I told him that I had had my back adjusted by an osteopath and it had relieved some of the pain but my shoulder was still hurting and the numbness was still there, he said little but he was concerned. He ordered a CT-scan of the chest and MRIs of the spine, and agreed that we would end the regimen before Christmas. This was last week, the 12th or 13th – it seems like an age has passed since then. Andre and I told him about our plans to go to Hawaii for New Year’s Eve. I said that I felt tired, that my body needed a break from the chemo and I just wanted to be in a different place for the New Year. He was really supportive. He said he understood and thought it would be fine and that I should come back the next week for the scans and to have the pic line removed. We drove back on the 15th rejoicing that the line would soon be out and perhaps with its departure, the pain would go away.

On Friday, the pain increased and on Saturday morning, I woke up with my left chest and armpit feeling sore and hurting. By afternoon, nothing had improved, so Andre called Cedars and they recommended that we go to the ER. I was terrified of having a Scripps experience again, so for a while we debated if we should just drive up to LA, but the nurse was against it, and finally, we left Mira with our neighbors and went to Palomar-Pomerado.

Fortunately, our experience was good. They took me in fairly quickly and got me to a room. The doctor came and suggested I took percosett against the pain. I was in such agony at this point that he suggested I took 2 of them and I gulped them down. It took a half hour but the pain eased slightly, enough that I could go to get an ultra sound of the pic line done, which revealed no problems with the line. Then, they did an X-ray of the chest, and we discovered that there was fluid in my lungs. The doctor said that it was likely the cause of some of the pain and that we should contact the doctor at Cedars and get it drained. We came home, partially relieved and Andre dug out our arsenal of pain killers and asked me to just take something. I tried but nothing helped – the déjà vu was so awful. I cried in pain through the night, dreading what this repeat of last year’s experiences could mean.

Monday morning, Andre was on the phone with Susan, and they told him to drive up with me and they would fit us in for a CT-scan immediately and set up a Thoracentesis for Tuesday to drain the fluid. We drove up to Cedars at 2, had the CT-scan and then went to Forscher’s office to await the results. He came in with Susan, pulled the scans up on the computer – one from March, one from October, and the one from the day. As he went over them, I could feel the tension rise in my body. I hate looking at those scans – my beautiful lungs covered with white spots.
“These regions have calcified, as we saw in March and October, and some of them have gotten stable or smaller, even,” he said, “but let me show you what concerns me.” And he pulled a view of the chest in all 3 scans and said, “This is a new area that wasn’t there before. I believe it’s new tumor growth around the heart.”

I sat there frozen, thinking maybe he didn’t say that. Maybe it’s a mistake. Maybe if I ignore it, we can pretend it’s all better. But Andre is made of sterner stuff and asked, “How is that possible?”
“It’s unusual,” said Forscher, “but it can happen that most of the tumor responds to chemotherapy but some part is resistant, and I’m afraid this might be like that.”
Andre started arguing with him, trying to understand. I didn’t bother. All I could feel was, “I’ve failed. It didn’t work. I worked so hard, endured so much and it doesn’t matter.”

After a few moments, Forscher said he wanted to check something with the radiologist because he hadn’t really been able to talk to him before, so he and Susan left the room. Perhaps he wanted to give us some moments alone. Andre and I just sat there at opposite ends of the room, not moving, not speaking. The voices in my head were all talking – “It’s come back. No, it can’t have. It’s probably a mistake. Oh no, after all this, I am going to die anyway.” And then I looked across to Andre and thought about how hopeful we were that 2012 would be a better year. How we had hugged each other in relief at the thought that 2011 was soon going to be over, and whatever 2012 had to hold had to be better. “Not anymore,” I thought.

I felt sorry for myself and then, as I looked at Andre, my heart hurt. Did he really have to endure more? And my poor child; she had thought it would all be over. We had all pulled together, gritting our teeth, with the thought that December would bring an end and hope. Now hope was crushed.

Still, Andre and I were quiet, unable to speak. Trying to distract myself from self pity, I watched him sitting in his corner of the room, and slowly I realized, he was angry. I could feel the fury inside him, in the tightness of his jaw and the hardness of his face. He is such a calm person, he rarely gets angry. I laughed to myself, thinking about how he has often said that I’m one of the few people who can push his buttons enough to get him mad. He caught me looking at him and finally spoke.
“I hate those bastards at Scripps,” he said.

I shrugged. What did it matter now? Tears came in my eyes. “Don’t give up hope,” he said, “we still don’t have all the information. Let’s wait and see what Forscher has to say.” So, we continued to sit at our ends of the room, plunged in our dismal thoughts.

And now that Death was in the room again, so close to me, I thought about all the times I called to it and longed for it, and felt ashamed. How many times had I insulted my dear husband’s hard work in protecting me and caring for me, calling to die, like a petulant child. And now, I wanted to live.

“I’m sorry,” I said to him, “I’m sorry about all the times I’ve hurt you by saying I want to die when you were doing your best to help me. I never wanted to hurt you, I’m really sorry.”

He looked at me, and then got up and came to my chair to hug me.
“I understand,” he said, “I know that it’s only because you see death as a way to escape the pain. And we have to work on that because there has to be another way of relieving your pain. So, don’t worry about me, I understand.”

And then I was crying, holding him close, feeling so blessed to have a friend like him. And I felt that I couldn’t give up, for his sake, I had to fight.

So, dear friends, now you know our news. There is more to tell you, of course. Things are not completely dire. Forscher thinks that there are some options available, and one of us will blog next about that. Writing this has been difficult because I am in pain and it seems to escalate as I relive those days. So, I need to take a break now.

My dosage of Lexapro has been increased to 20 mg. Whether it’s that or my sheer perversity, I’ve decided not to give up, though this pain cripples that resolution often enough. For now, the chemo is over. The thoracentesis went well and the fluid is out of my lungs, the pic line is out of my arm, and I just spent 4 wonderful days with my beautiful, uplifting daughter, enjoying the gorgeous weather at home.

On Wednesday, my brother was the only other person who knew what we were facing. Then, on our way home, we saw Leticia and Kent, and unable to bear the burden, I told her the news. I will never forget the way she held me close in her arms, mixing her tears with mine. In that one moment, she opened her heart and gave me so much love and compassion, it was blessed to just stand there and receive it. As we drove back, I told Andre of the sense of relief telling her gave me. And then I realized why I started the blog. Because, dear friends, I need you. I need that love, that compassion, that kindness that you have already showered on me. How I would love to tell you that this journey is over now, that all is well. But it is not so.
Will you walk a little longer with me?

With love,
Radhika.