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 :)

4 comments:

  1. Andre....just wanted to let you know....from what I have witnessed, you are doing an amazing amazing job of loving and taking care of Radhika. You told me once that you just wanted to know what this was that was causing her pain so you could help her fight it....be a warrior in her corner...fighting for her. And I have to tell you...you have done that and more. Am very proud to know both of you and love you both(and Mira too) very much. Am looking forward to knowing you are both on your way to Kauii for some much deserved R & R and peacefulness. Ruth
    ps...commented as "anonymous" as I didn't quite understand the whole profile thing.

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  2. You are in my prayers daily!!!! I follow along and send you healing energy. I smile at your funny remarks, I cry with you too. I get scared with you too. I have much hope that you will cross the red tape reading "finish line". A few more laps may have been added, but maintain the hope. Envision it, dream it, meditate on it. Have a wonderful time wherever you go. The best part is "no pic"! Getting that out felt so incredible....I know. :) With all my love, Treigh

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  3. Thank you both for your posts -- We know they were both difficult but we very much felt your strength and strong spirits in both of these entries. Of course we will continue to journey with you and we will especially visualize the three of you enjoying each other in Hawaii! Blessings to all of you on your travels. Leticia and Kent

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  4. Hi Mrs. Radhika - I have been following your blog and I must say that you are an inspiration to me. I gain a lot of confidence after reading your posts. My prayers are always with you and I am sure you will succeed in your effort. You are blessed with an amazing husband. :) Good luck and keep your posts coming. I look forward to hearing about your new year celebrations in Hawaii. Take care.

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