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.