There’s a beautiful grand piano in the lobby of the Thornton hospital and a young woman volunteer was playing classical music while I was waiting for Sheila to emerge from the recovery room earlier today.

An elderly frail-looking gentleman was sitting a few couches over from me, and he asked the pianist if she could play “Happy Birthday” for a friend of his that he had called on his cellphone. 

She attempted the song but surprisingly wasn’t doing very well, so he motioned for her to allow him to play. Considering how slowly she rose from the bench it was obvious that she wasn’t too thrilled. He lifted his frame from the couch and settled on the bench. What followed literally brought all foot traffic and conversation in the large atrium lobby to a standstill. People on the upper floors were leaning over the railings. People who had been talking on cellphones dropped their arms to their sides.

I didn’t recognize the man and for all I know he is a famous musician, but for at least 5 minutes he had complete command of that piano. He played a full bodied jazz rendition of “Happy Birthday” unlike anything I’ve ever heard before. The music completely filled the atrium. It was absolutely wonderful. Breathtaking, actually. In those brief five minutes he momentarily transformed that hospital into a fantastic concert hall and lifted everyone’s spirits.

When he finished, he slowly stood up, picked up the cellphone and tipped his hat as he walked away while people, including me, applauded. What a nice, and much needed emotional break that was.

The first part of the week was rough for Sheila. She wasn’t sleeping or eating much , and as a result became very emotional.

Tuesday was blood tests and infusion day. When I arrived at the hospital Sheila was practically sobbing in the waiting room. I thought she might be upset because I wasn’t there when she arrived, or that she had gotten bad news from Peter, the trial manager. So I rushed to her and asked what was wrong. She was upset over the wait (she’d been waiting for 45 minutes for the blood test) and she had been trying to reach Peter since the morning and he wasn’t returning the calls.

Then there was a problem with her name change that she’d done over a month ago and they were confusing her with another “Sheila,” so we had to deal with that. And then the pharmacy took over an hour to mix the drugs for her infusion. A lot of tears were spilled that day.

Then yesterday we met with Dr. B to talk about the test results on Sheila’s thyroid. She has two or three nodules growing on the thyroid that according to Dr. B probably aren’t malignant, but they won’t be sure until they do a biopsy.

So today, Sheila tried scheduling a meeting with the endocrinologist, and they said the earliest opening was in late February. Clearly that’s too far off. So Erin, Dr. B’s nurse case manager was able to get Sheila in tomorrow morning.

We’re not sure how they biopsy the thyroid, but we’ll find out tomorrow.

Talking with Medco, our drug provider has become an almost daily occurrence. Since Tuesday we’ve talked with them at least once, and sometimes twice a day.

Lastly, we thought the infusion Sheila gets every 6 weeks was a temporary deal. But Dr. B informed us yesterday that Sheila will have to do this for the rest of her life. That doesn’t seem possible, but it’s obviously the case for the near-term.

I’m tired.

What a difference a week can make.

Sheila had the neck CT last week to find out what’s causing the pain and apparently she has a lesion on her thyroid. Not sure how that happened and whether it’s connected to the drugs she’s taking, but she had an ultrasound yesterday and will have some (more) blood tests taken next week.

It was a stressful time last week because we didn’t hear back from Dr. B or her assistant and kept leaving messages. Sometimes I wonder if they are aware of the added stress they impose on people. Ironically, they have her doing biofeedback at Scripps to reduce her stress and the impact it has on the tumors, but then they leave us hanging for three days waiting on test results.

Sometime over the weekend I was working in my home office, which is at one end of the house, and Sheila was in the kitchen working on her computer downloading some iTunes.  After awhile I could hear her singing to a Prince song. I quietly crept down the hall (although I didn’t have to be too quiet because she had the music up pretty loud) and peered around the corner. I immediately wished I had my video camera. This was a Kodak moment. There was Sheila in her jammies and socks dancing and singing to “Rasberry Parade.”

Of course, she didn’t know that I watching, so it was very satisfying to see Sheila “unplugged.” It’s the happiest I’ve seen her in a long time, and it made me feel really good inside.

Although she still tires easily and goes to bed much earlier than normal, overall she’s been very up. Very happy. Laughing more and being more giddy. Right now, things are almost like they were before December 2007.

Have a great Thanksgiving everyone. I’m certainly very thankful to have Sheila and my beautiful daughter, Tammy.

[Digg]

Well, it seems that the results from the first CAT scan after Sheila started with the drug trial wasn’t a fluke. She had the second scan on Monday and we met with Dr. B yesterday and found out that the main tumor – the one in her left lung – was down to 7mm. In July it was 15mm. So that is very good news.

She’s still having pain in the lymph node in her neck, so Dr. B is scheduling a neck CAT scan to see what might be the problem. She doesn’t think it’s related to the tumor, but for our peace of mind, we’re going to be sure.

Sheila’s hair is still thinning, but Dr. B said that she won’t lose all her hair. Right now it looks fine, but I know it still bothers Sheila. She got hair clips, or extensions to fill-in the sparse areas from a friend of Bunny’s, but Sheila has to practice putting them in. 

We’re relieved, for sure. When Peter, the research associate, walked into the exam room I guess our tension was written all over our face because he blurted out, “The test results are fine!” Normally Dr. B tells us the results, but Peter said that we looked really stressed so he wanted to get that out quickly so we could relax.

I hate walking around with that knot in my stomach. Of course, it only gets worse as the time draws closer for each test and each results meeting.

But at least we have each other to go through it. I see many people coming to the appointments alone. Some have wedding bands on, so I can’t help wonder where their other half is. I couldn’t fathom letting Sheila go through this by herself. Nothing is more important than being with her. It helps me to be with her as well. I would be too distracted if I went to work while she was at an appointment. And my heart would ache too much anyway, so it’s better for both of us to be together as much as possible.

On Saturday night I was doing some filing in my home office and Sheila walked by on her way from the bedroom. She was in her pj’s, but she had a wool hat pulled down over her ears.

I asked if she was cold, and she silently shook her head no. And then she started to cry. I got up and asked her what was wrong. With a bowed head, she whispered that she wanted to look pretty for me. We sat on the bench in the hall and held each other.

I couldn’t have loved her more than I did at that moment. Those big blue eyes of hers, wet with tears, just staring back at me. It’s times like that that crush my heart. I want this to be over for her. I want her to be cancer-free and pain-free.

She’s been losing more of her hair, and it’s really bothering her. We find hair everywhere. But it’s not to the point that most people would notice. It is thinner than it’s ever been. We keep thinking it’ll slow or stop, but it just continues, like a very slowly, persistent, annoying dripping faucet. But she’s still incredibly beautiful.

She’s sitting on the couch right now watching a Seinfeld rerun and doing something on her computer. It’s warm in the room, so she’s just got a blanket wrapped around her midsection. Very sexy shoulders. Her hair is just long enough to put in a ponytail, so I can see her right ear and her long sensuous neck. She is so beautiful. I love her profile…..

I digress…a little distracted by her sitting there….

So over the weekend while we were at the mall, Sheila wanted to shop for hats. We didn’t find anything she liked, so for now I guess she’ll stick with ballcaps. Now that I know what she’s looking for, I’ll keep my eyes open. If any of you know of good hat websites, let me know.

Her lips have finally healed, so we’ve been able to kiss for the first time in too long!! Yeah!!! It’s certainly helped both of our attitudes. She’s been much happier this week, even though her infusion yesterday was a bit painful. But she’s got an amazing resilience. It’s so good to hear her laughing and being silly again.  

The best times are the times we get to spend together.

On my way back from lunch yesterday I was listening to NPR and a guy was talking about how he and his family were dealing with his sister-in-law’s breast cancer. It’s not often that you hear from the support side, so his comments drew my attention.

I’m glad I listened to the segment instead of changing the channel like I normally would because I don’t want to hear about any more cancer issues if I can avoid it. Especially when I’m not around Sheila.

The guy on the radio used a term that immediately captured what I’ve been increasingly struggling with the past few weeks. And somehow, giving what I’ve been feeling inside a label provided some relief. He described his experience as “palpable trepidation.”

“Palpable” is defined as “capable of being handled, touched, or felt.” “Trepidation” is “a state of alarm or dread; apprehension.”

I’ve been going around with an achy heart, and I couldn’t put my finger on what was causing me to be so tense inside. I haven’t been sleeping well – waking up every two hours and then having trouble going back to sleep. Yes, I know it relates to Sheila’s cancer, and in many ways we’ve adapted to its existence in our lives. For the most part.

So when I heard him say “palpable trepidation” it crystalized the heaviness, ache, pain, and anxiety I’ve been feeling. It’s the constant low-level hum of apprehension and dread that I carry with me 24/7. It’s the hurt I feel when I see Sheila in pain, which is now a constant, daily “companion” for her.

The trial drugs may be working, but the side effects are both painful and visible. I can’t remember the last time I’ve been able to kiss her. And of course when you can’t do something, you want to do it even more.

Her hair is falling out and noticably thinning. We had to take her bathroom sink drain apart this morning because it was clogged with what hair she hasn’t been able to catch. She mentioned that she’s thinking about getting a wig. She still has “plenty” of hair, but unless the hair loss tapers off and stops, the wig may be an inevitablity. However, I reminded her of our pact to be bald together. I would not look good with “a rug.” Hopefully I don’t have a weirdly shaped scalp under these curls.

We’re certainly happy and grateful for the apparent progress she’s making with the trial drugs. I think the anxiety and apprehension comes from her fellow patients in the support group who aren’t doing so well, reading about others – like Paul Newman who passed away yesterday from lung cancer – and seeing the physical changes to her body that reminds us that we’re still in a desperate fight.

I love Sheila soooo much and my soul is so sad for this to be happening to us.

Sheila had her CAT scan yesterday morning and Dr. B called her late yesterday afternoon to tell her that the preliminary results show that the tumor in her lung has reduced by about 50% and the one on her lymph node in her chest is “gone.” We still can’t believe it!!!!

The CAT scan can’t determine if the tumors on her spine and rib are gone, but Dr. B assumes they are based on the other results. And we don’t know about the one in her neck. But for now, we’re basking in the unexpected, but very welcome news.

We see Dr. B on Tuesday, so we’ll find out more then.

I hope your heart is as happy as ours are at the moment!

Thanks for all the good thoughts.

We’re long back from our road trip. The trip to Catalina was nice, at least the part we were “allowed” to see. Neither of us has ever been to an island where land travel was so restricted. You aren’t allowed to walk freely outside of Avalon, you can’t bike on the road outside of Avalon without a permit, no cars, the tours of some parts of the island are expensive and relatively short, etc….

There was enough for us to do and see in Avalon for basically a day and a half, but I’m not sure we’d go back.

Before we took the boat over from Dana Point to Catalina, the doctor’s office called that Wednesday afternoon with the new test results to tell Sheila that she could resume the medication, but half dose only because the full dose was affecting her bone marrow.

Tomorrow she goes in for her CAT scan. It’s been 6 weeks since the last one. We haven’t talked about the appointment, other than to confirm the time. We don’t talk about her cancer much anymore. What else can we say?

I see her reading articles, looking at various cancer-related websites or exchanging emails with her support group. At times I think, silently, that she’s too absorbed/fixated on the issue, but I can’t imagine what it’s like being in her skin. What would I be doing? I worry about that too. Living with this like we have makes my mortality a daily companion. It’s like a shadow that persists even in darkness. And it’s unsettling to constantly be thinking about and also fighting back thoughts of death and therefore the futility of daily living.

Sheila’s been having fairly continuous pain in her neck where the cancerous lymph node is. The other morning we went to bed around 1 or 1:30am and when I woke up at 4 she wasn’t in bed. She had woken up and was in pain, so she went down to the kitchen to read rather than disturb me. But when you’re so connected to someone – “spiritually” isn’t the proper term, but it’s all I have at the moment – even in a deep sleep you are attuned to their presence or absence.

Tonight she got home a little after 7pm and was asleep on the couch by 9. She woke up long enough to take her medication, and I tucked her into bed about 15 minutes ago. She looked so cuddly and warm. Loving and in love. Always with a smile on her beautiful face. I get terrified and very sad thinking of not having her with me “forever.”

I’m nervous about what the results will be next week. I’m sure Sheila is also. It’s also her birthday next week, so we don’t need bad news on her birthday. I hope the results of the CAT scan at a minimum show that the tumors have not grown and no more have appeared. I won’t be greedy at this point and ask that they be gone. That’s probably very unrealistic and I certainly don’t want to get my hopes that amped only to be crushed. Again.

I love you, Ripley….sweet dreams…..

We haven’t been able to travel together anywhere outside of San Diego for the past 8 months. Now that Sheila started the clinical trial and things have settled into a routine, we decided to go away.

We had originally signed up for an OARS multisport course in Northern California that would have been 5 days of mountain biking, hiking, climbing and Class 4 white water rafting. We were a bit apprehensive about the rafting, seeing as how neither of us has rafted above Class 1, but we were willing to be daring and try it.

Unfortunately, we were the only ones to sign-up, so OARS canceled the course the week before it was to start. Rather than cancel our much needed vacation, we decided to head up to Santa Barbara and then Catalina Island instead. Sheila has never been to either place, and I had been to SB about 12 years ago. We were looking forward to getting away, finally.

So I booked a room at a B&B in Santa Barbara and another B&B on Catalina. 

Sheila had taken her “routine” blood tests on Friday morning for the clinical trial studies and it wasn’t until last weekend that she commented about no one calling her on Friday with any results. So perhaps no news was good news.

We got to the B&B Sunday afternoon and Monday morning, just after breakfast, her phone ran. It was the doctor’s office calling and asking, ”Where are you right now?”

I was sitting on the bed watching her face as she repeated the question. After she told them we were in Santa Barbara they told her that the test results showed that her white blood count had noticably dropped and that they needed to run more tests. There was some more conversation, but quite frankly I think we both blanked out at that point. We were disappointed/angry that the first day of our first trip in 8 months was being invaded by a call from the doctor. 

Sheila hung up and a short time later the study assistant called telling Sheila that she had to stop taking one of the trial drugs because it may be affecting her bone marrow and that she had to go to the nearest hospital by Wednesday for them to run some tests that UCSD needed to evaluate why her count was down.

So we spent the next hour finding and calling the hospital in Santa Barbara and her doctor in San Diego to get the right phone numbers of the right departments so they could fax the orders up here.

We tried to put it out of our minds for the rest of the day,  but there was no getting around the mental disruption it caused. By the end of the day we had managed to distance ourselves from it. 

Today was a better day, although she has gotten increasingly tired and has to stop often when we’re walking. Tomorrow after breakfast we’ll go sit at the hospital and wait for them to do the blood draws before we head down to Dana Point to take the boat over to Catalina. We’re not sure if cellphones work on the island, but, at least for me, I’m hoping they don’t. We just need an escape…..

Wow…almost a month has passed.

I was in China (Beijing) and Japan (Tokyo) for two weeks on business – the first major trip I’ve taken all year. As you know, I haven’t wanted to leave Sheila’s side, so this was a tough trip for both of us.

And more importantly, for the past month I’ve been enjoying the sense of normalcy that’s escaped us since January. Sheila has been relatively pain free and the side effects from the new drug(s) have been very mild. She smiles and laughs a lot. So that’s very nice.

We saw Dr. B yesterday and I didn’t like going back after a month break. (At least a break for me. Sheila’s was there while I was in China to get the infusion treatment to help her bones fight the tumors. It wasn’t a pleasant experience and my thanks goes out to Susan W. for being with Sheila and helping her through it.)

So being back at Thornton was a bit of a cold splash in the face. A reminder that something insidious is still very much a part of our life.

My concern is that Sheila’s lost about 7 pounds. That’s a lot for her. She’s thin to begin with so weight loss is not a good thing for her, health-wise. Her appetite is all over the place, mostly down. So I’ll have to go back to cooking more. I see a big pasta meal in her future this weekend.

I don’t have much more to say today. I’m anxious and tense. I’m worry about her all the time. I love her so much and desperately want her to get better.