They ran a bunch of blood tests and a CAT scan and determined that she has a pulmonary embolism (a blood clot) in her upper right lung blocking one of the sub-arteries, but it’s not in a position to threaten her life. So that what’s causing the intense pain (an 8 out of 10 according to Sheila) and winded feeling. Her oxygen level has dropped slightly to 95%, but it’s still within an acceptable range.

At first they were going to admit her because she got the PE while on blood thinners which are supposed to prevent clots, and they were concerned that something (like another tumor) was causing the development of the clot. So they started to process the paperwork to move her upstairs.

But then the ER doctor got hold of Dr. B, and they reviewed the CAT scan and other tests and made the surprising turnaround decision that Sheila could be released and treat herself with injections at home.

Wow! We were very surprised at the reversal and became very concerned that being at least 50 minutes from the hospital would present a problem if Sheila got worse later tonight at home.

So we had a lot of conversations with the ER doc to get a comfort level with the new decision.

Basically times have changed, as I think I’ve mentioned before, that hospitals now avoid holding people if the level of treatment isn’t going to be much different than what a capable, mature person can do for themselves at home. So because Sheila has been very good about taking her meds and doing her daily shot for the past year and half, they felt that she could get through the night at home.

There isn’t anything they can do to the clot anyway. They don’t go in and get it. At least not where this one is. The change in treatment now is that she has to give herself a shot twice a day, every 12 hours, for at least the next 6 months.

So we left the hospital at 10:30pm, tired but somewhat relieved that we weren’t going to spend the night and all day tomorrow in the hospital. Plus we have an appointment at USC Norton Cancer Center in Los Angeles on Friday that was tough to get, so we didn’t want to miss that.

She’s still in a lot of pain, (only when she breathes she says), but she has an amazing pain tolerance level, so she’s putzing around the kitchen trying to burn off the tension energy before we head to bed.

This morning, about 10 seconds after she finished upchucking, she was sitting on the side of the tub cracking jokes, while I was still getting over her abrupt nausea and sickness. Yet another example of what an amazing woman she is. I love her so much…

Sheila has been in a lot of pain since Sunday and unable to sleep more than two hours at a time. This morning she got very sick when she got up, but I gave her some Ginger Ale when she was done and seemed to settle her stomach. But the chest and side pains continued.

When we saw Dr. B on Tuesday she thought the pain could be a result of the radiation treatment. But it’s too high in her chest and too persistent. So about an hour ago Dr. B’s office told her to go to the ER because it could be a pulmonary embolism, again.

She’s there now, and I’m heading out to get her something to eat – she hasn’t been eating much recently and has lost about 6 pounds. But I keep “force” feeding her. Just stuff she usually likes. So she has a craving for a Submarina sandwich, so that’s where I’m heading.

It’s been a quiet couple of days, especially after what we dealt with earlier in the week.

The very big news is that Sheila sold her company on Wednesday. We were barred from talking about it during the negotiations, but we’re relieved that it’s a done deal. At least the daily stress that she’s been struggling with for many months is now over, for the most part, and we can look forward to her having some much needed downtime.

Her 14 employees are being retained by the new owner, and that was a big concern of Sheila’s so that too puts her mind at ease. I want to thank all of them for the incredible support and hard work they have given Sheila and the company all these years – especially the last year and a half. They’re a good bunch of people.

She’s going to work with them for 30 days as part of the sales agreement and then we’ll see what happens after that.

She’s been very tired since Thursday and sleeping a lot. But Dr. L told us to expect that. I think it was Thursday that she came home from work and within an hour was in bed for most of night. She’s still only been getting about three or four hours of sleep a night, so hopefully once the pneumonia is dealt with, she’ll be able to sleep better. Me too!

Today we went to Steve and Joni’s for a bbq. The weather, food, and of course company was perfect.

Sheila was able to sit-up with me to watch “The Punisher” movie, and then crashed. So hopefully she’ll sleep through the night.

Tomorrow she’s hoping to work in the garden. The strawberries are ready to be picked, as are some of the peaches. She gets so excited about all the stuff that’s growing.

Our appointment was at 8am, and it’s normally a three hour drive, but we made it in two and a half. (Yes, I can “see” the knowing head shakes from those of you who know the N.Y. driver in me.)

We didn’t meet with the doctor (Koczywas) we had been referred to by Dr. B., (problem 1),  but another seemingly competent one, Dr. Cristea. In short, Cristea said that after reviewing Sheila’s history, there aren’t any trials at the City of Hope hospital targeting lung cancer, so there wasn’t anything they could do for her.

We asked if she had spoken to Dr. B about this, and she said that she had spoken to another doctor in Dr. B’s office who we’d never heard of (problem 2). Why on earth would she discuss a case with a doctor who had never seen or treated Sheila instead of asking for, and talking with Dr. B. ????????!!!!!!!!!

Obviously we were shocked on many levels. Why did Dr. B. send us there if there weren’t any applicable trials? I asked about seeing the doctor we had been referred to and Cristea said that they all work together and have the same programs, so Koczywas wouldn’t tell us anything different. “Sorry for the bad news…”

Needless to say, on the way home Sheila cried and cried. And yelled. It was a quiet drive otherwise. At one point she did call Dr. B’s office to let her know what transpired.

Dr. B called Sheila a few hours later expressing shock at the news and said that she would call Dr. K, the doctor we were supposed to see. Shortly thereafter, Dr. B called back and said that there is a trial at CH that Sheila qualifies for, so she’s not sure why Cristea told us otherwise.

So…are they just incompetent or lazy?

Needless to say, I called Cristea last night and left a scalding message and “requested” that she call back to explain what happened. I left another message today with her nurse practitioner. Of course, I haven’t heard from them.

Our confidence is shaken in the oncology dept at CH at this point. If they can’t get something right as simple as whether they have a drug trial available for a patient or not, what does that say about the more complicated process of administering the trial?!

Sheila spent hours going from one department to another at UCSD and Scripps pulling her records and getting copies made. She was up past midnight, coughing her brains out, while assembling the records into some coherent sequence. It may not be how they really feel, but the outward actions and temperment of many of the people we interact with sure seems to display an utter disregard for the time drain and suffering patients go through. For once, I’d love for them to change places and experience the, at times, gut wretching, sleep deprived life many patients live on a daily basis.

More than once we’ve felt like we’re blazing a trail. That somehow Sheila is the first cancer patient they’ve every laid eyes on and have to figure out the processes and procedures for the very first time.

The new radiation therapy building at UCSD that’s only three weeks old, uses different software than the UCSD Moores cancer center it belongs to. They’re across the street from each other! They don’t share the same patient information database!!! How insane is that!

I could go on, (and on, and on) but my head’s going to explode if I don’t change my focus right now. Their screw-ups, their seeming apathy, their continual process and conversational disconnects are screwing with my wife’s life and that makes me very angry…..

Sheila had her radiation treatment this morning after a 40 minute delay due to calibration problems with the accelerator.

She’s coughing a bit less and has a bit more energy. So that was nice. Maybe the antibiotics have kicked in to attack the pneumonia.

The City of Hope hospital in Duarte, CA called this afternoon. They have a sudden opening tomorrow, so we’re headed up there to meet with the oncologist that Dr. B recommended. It’s hard not to get our hopes up that they’ll have a trial available that Sheila will qualify for.

On the drive home tonight I was thinking about how gun-shy I’ve become in approaching these appointments. It’s like a dog with a shock collar. You just don’t know when you’re going to get zapped. Fortunately, I haven’t developed a twitch. Yet.

Sheila on the other hand is quite excited about going. I guess I’m just very anxious for her. I so desperately want something to work well. And long term.

At least the name of the hospital sounds promising…

We didn’t get out of the ER until 9pm. They had to give her two IV’s of painkillers, but not before I had to lose it with the staff.

Sheila was in tears and practically hysterical because of the pain. I asked the doctor if he put the painkiller order in and he said that he had. His body language expressed a bit of surprise that she hadn’t received the medication.

I went back to her room and watched and waited, while Sheila continued to wail and cry uncontrollably. There was only one other patient in the ER at the time and there had to be 6 nurses and at least two doctors standing around talking and working on computers. Forty minutes had gone by since the doctor put the order in, and I finally went up to a nurse and asked how long it took for the pharmacy to deliver the medication. Incredibly the nurse said that the drugs didn’t come from the pharmacy, but from a cabinet in the ER and she pointed to one about 10 feet away.

Needless to say, I went nuts. I couldn’t believe they were being so callous and blatantly detached to the suffering of a patient. After I vented on the staff they were practically falling over themselves to get the IV set-up. Several of them apologized, profusely, to Sheila but the damage was done.

Sheila got sick, at least twice, on the medication. But eventually she responded and the pain eased.

They rescheduled her radiation session twice that day, but unfortunately we didn’t get there. So they’ll add another session on the back-end of her schedule.

The findings are that Sheila has pneumonia, again, in her left lung. Considering the blockage of her airway, it’s not a surprise. The junk in her lung is building up and has nowhere to go. So she’s coughing all the time.

And the chemo drugs have also affected the nerves in her intestines, so that’s what was causing the intense pain in her spinal area. So she has medication to deal with that.

They are treating her for the pneumonia and she’s back on schedule with the RT.

We’ve heard back from both USC and City of Hope, so Scripps and UCSD are compiling all the information to send to them so they can evaluate Sheila’s case. Hopefully we’ll get appointments for this coming week.

Last night was bad for her. A lot of coughing and discomfort. And when we finally got to sleep around 4 this morning, for some bizarre reason, the smoke detector system in the house went off. Twice. What a night….

Day 2 of radiation therapy went fine in the morning yesterday. But by 5pm Sheila was in excruciating pain in her lower back where one of the tumors on her spine is located. We didn’t get to bed until 1am. She/we struggled through the night, didn’t get much sleep.

This morning at 6:30 I ran to the pharmacy to get drugs for her, but they didn’t help, so we called Dr. B’s office, described the problem and they thought that it could possibly be a spinal compression fracture caused by the tumor growth on the spine. So they directed us to the Thornton ER. Which is where we’ve been since 9:30.

They did blood draws and an x-ray. The barium from Monday’s CAT scan is still in her system, so the x-ray was partially blocked, but the initial read by the ER doc is that it’s not a spinal fracture, but he’s waiting for the official read from the radiologist.

Sheila was originally scheduled for radiation therapy this morning, so we rescheduled to 3:30pm. Hopefully she’ll still make that time. It’s 1:45pm now, and I don’t know what the ramifications are of missing a day.

It would be a gross understatement to say that today is a very bad day.

We met with Dr. B this morning at 9 and the news was that there are innumerable, apparently new, tumors now; the original tumor in her left lung has grown 50% in 6 weeks and is now back to the size it was when all this started in January 2008; the other existing tumors have increased by 20-30% in the past 6 weeks; there may be a tumor on her ribcage; and something wrong with the spinal discs behind her thorax.

But the worse, and most immediately threatening issue, is a tumor in her right lung that’s protruding into her major airway and partially blocking it. That’s why she’s having trouble breathing and coughing so badly.

So at 10am Dr. B called the pulmonary surgeon to see if he could operate on the airway tomorrow and remove that part of the tumor, but he said that it’s in an area that he can’t reach, so surgery isn’t an option. The tumor, which appears to be surrounding the airway tube, is about 2 inches long.

While Dr. Bwas talking with him, she sent us to radiation oncology for a consult with Dr. Lawson. He feels confident that radiation therapy (RT) would have an affect on the tumor site, but of course can’t guarantee what those results will be. He did say that it won’t eliminate the tumor, but should at least reduce it enough to open the airway again.

So he immediately scheduled her for a CAT scan/simulation at 3pm. That’s a procedure where they find the tumor site and mark – or tattoo – her body where the lasers have to line-up the radiation beam each time for treatment.

Dr. B and Dr. L both said initially that we would start treatment tomorrow, but by the afternoon Dr. L said that he wanted to start today. So after her simulation, which lasted about a half hour, they scheduled Sheila for the RT center at 5pm. The procedure took about 20 minutes.

So she’ll have RT everyday for the next two weeks, not including the weekends. And then they’ll check her 6 weeks later again to see what the results are. That’s how long the radiation continues to react with the cells. It doesn’t kill the cells instanteously.

Of course, Sheila didn’t receive chemo today. She’s out of the trial. It’s obviously stopped working.

Unfortunately, there aren’t any more trials that she’s eligible for in San Diego, so we now have to go to the City of Hope hospital in Los Angeles, or the USC Medical Center, also in Los Angeles. We’ve called the two doctors at USC to file for an appointment and should hear something in the next couple of days. It was too late to call the doctor’s office at the City of Hope. So we’ll do that tomorrow.

We’re at a crossroads of future trial eligibility. Sheila’s had three different treatments and most trials won’t take you if you have four or more. So this next step is critical. If there’s a trial that she’s eligible for and, god forbid, it doesn’t work, then our only option going forward is palliative care – care that treats the symptoms, but not the cause.

We’re also going to inquire about MD Anderson in Texas. They have a great reputation as well. But all of this has to happen within the next two weeks so that we’ve lined up a course of treatment that she can start after RT ends.

Needless to say, we’re scared and sad at the same time. We feel like the walls are drawing closer and our escape options are dwindling. It’s such a frustratingly helpless feeling. How can the cells be so “intelligent” and seemingly indestructible?

We’ve had our dark periods before and within a day or two our resolve rebounds, but it sure gets more difficult each time. I’m truly amazed at how stoicly Sheila handles the news now. I don’t know if it’s denial, or steel spine fortitude. I don’t want her to suffer. I don’t want to lose her. We still have adventures to do….

That word represents many things today.

We, Sheila and I, just returned from a week in Shanghai. I had to go as part of my responsibilities with the International Organization for Standardization, and fortunately Sheila was cleared to travel with me. She missed out on Beijing last year and didn’t want to pass up her first trip to the Orient.

Even though she left here fine, she was under the weather a couple of days into the trip – slight fever, bad cough, and pain in her chest. We managed to see a couple of sights on my limited time off, but even then she didn’t have much energy. Friday, our last full day, was probably her best day. We went to The Oriental Pearl TV tower - a 468 meter (1536 foot) building with a 360 degree observation deck that’s about 260 meters up. It has a bit of  a futurist minaret look to it. And very colorful.

Then our conference host took us to the Yu Garden that was built between 1559 and 1577. Well…we didn’t actually see the Garden, but we ate at a very famous restaurant just outside of it.

We got back on Saturday afternoon and have been adjusting to the 15 hour time difference. It’s now after 1 on Monday morning, and we’re both going strong. But we have to get to bed shortly because Sheila’s CAT scan is at 9am.

On Sunday we went to see the movie “Up” which was surprisingly “Down.” Because it’s a Pixar movie and rated PG-13, there were a lot of very young kids there, and several parts of the movie had them, and us, in tears.

We had intended to see the “Star Trek” movie but got held up in traffic and missed it, so “Up” was our second choice. Perhaps it was meant to be, given our circumstances. It’s about a couple who meet as kids, (not quite our story), get married and have dreams of far-off adventures, but the wife dies in old age not having fulfilled one of their main dreams.

Considering that we’ve been on a bit of our own adventure quest/bucket list, it was a poignant and at times, painful movie.

Sheila’s breathing sounds a bit like Darth Vader with a rasp. It’s a rather unnerving sound, actually. Never heard anything quite like it.

She’s lost more hair, the port site and tube look red/irritated, and the persistent cough all concern me very much. I’m glad she’s getting checked over the next two days.

By the way, it’s our wedding anniversary as of midnight. One year. Wow…

I gave her the first anniversary card at 12:01am, and I’ll give her the other one at dinner tonight. We’re hopefully going to Mr. A’s. She’s never been, so I’m looking forward to another adventure with her.

On Tuesday we’ll get the results of the CAT scan from Dr. B. and hopefully the next chemo treatment later that day.

Happy (1st) Anniversary, Darth…may there be at least 50 more…

Love you bunches…Ken

Sheila rebounded from her malaise and has been feeling much better.

We went for a nice bike ride a week or so ago, just around the neighborhood, but it’s the first time we’ve been able to do that in quite some time. She was slow, and had to walk part of the time – something she’s never had to do – but she made it and felt good about it, so that’s what counts.

I’ve been tied-up a lot with all the changes going on at work. About 700 people took the early retirement package, and about 1200 more are being laid off over the next few months. So that’s meant more work and anxiety for everyone.

Just came back from a day trip to Tijuana. We have a newly promoted executive from Japan that wanted to see the operation, so I went with him to get the tour and operational briefing.