I've Learned... Not So Much

Some people slip from this mortal coil with little warning.  Others of us get some inkling that the end is near, and theoretically that means that we have time to prepare ourselves and our loved ones for our inevitable passing.

So what have I done with the past three years?

I'm not entirely sure.

There are still so many things I need to do - things to knit, things to write, things to organize - and so little time and energy with which to do them.  I know it's going to be impossible to do everything I want to do, and that is so frustrating.  I'm pretty realistic about my situation, I think, but that doesn't mean that I'm ready to go.  I wonder if anyone ever is?  

I'm afraid that I haven't learned as much as I should have about people and life and even about myself in the five decades I've been here - I feel as though I should be wiser than I am, and better prepared.  

I shouldn't be as worried as I am about other people, I should have more faith that things will work out.  I shouldn't be as impatient with youthful foibles as I am - after all, most of us do survive the mistakes we made as youngsters, and growing up will happen with or without my interference or assistance.  

I shouldn't be sweating the small stuff at this point in my life.  I shouldn't get so irritated when people don't know what to say, so they say stupid stuff ("well, you LOOK good...")  I shouldn't get so confused when people say things probably meant to be complimentary ("you are such an amazing/strong/fierce fighter..." - what does that mean?) and instead just enjoy the fact that they care enough about me to say something nice.  I should remember to compliment others more often, to let people know how much I appreciate them and love them.  

I should have a better idea of what life is all about.  You would think that with several years' warning, I'd have had time to figure all this out, but I don't think I've used the time correctly, or something, because I don't feel that I'm any wiser or better a person than I was four years ago.

What is the likelihood that I will close this huge gap in wisdom and accomplishment in a few short months, when I haven't done so in the last few years?  

Which means that I will go out pretty much in the same state that I came in... wrinkled, unevenly developed, flawed, and human.  




Well, it was a pretty darned demoralizing visit with Dr. Bouncy today.

We looked at my just-pre-Leg-Explosion  scans.

For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor.  It is not a nice tame sphere of haywire cells.  It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area.  It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg.  And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.

My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.


I was told earlier about the rib tumor that is expanding itself into the top section of my lung.  But it turns out I also have an independent tumor in my liver.

Which is the first of what is likely to be many.  Fairly soon, if this last treatment doesn't work.

Prognosis is not good.  This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.

So if this treatment works better than the others, I'll have some months ahead.  Probably not a year.    If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.

Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.

There are a lot of practical decisions and work that are going to need doing in the next few weeks.

No rest for the wicked, I guess...


Newest Info

**Newest info: No pneumonia, but multiple clots in my lungs, some fluid in my lungs, my heart may be under too much stress, I have a large but relatively new tumor coming out of my rib and protruding right through/into my left lung, my hemoglobin is too low, as is my potassium.  I'm having a lot of trouble eating much of anything - I'll have to talk to the nutrition folks at the hospital to see if they can bring something very small every two hours, rather than a bigger meal every five.  Not that I'm likely to eat much of that, either (not a big fan of the company that provides the hospital food here, I'm afraid).
The coumadin may not be thinning my blood adequately, so I'll be either combining it with another thinner that must be injected into my stomach every day (which means I'll have to do it myself... yeah, that'll be great...) or doing just the injected one.
I'll be in the hospital for at least two more days, maybe more.  They'll want to feel comfortable that I'm not throwing more clots and that I'm unlikely to make more.  
My bone marrow isn't up to the job of making more cells, so I may need to start having blood infusions. New chemo routine, so we'll see if that helps. This one will be my last 'reasonable' resort - after this, it's more extreme drugs with less record of success, when the more normally successful ones have already failed. So... you know.

**Much of this post is copied from my latest Facebook update - energy is not easy to come by, so I'm conserving where I can.  Sorry about that...


They Just Can't Get Enough Of Me...

Two glorious days of uninterrupted laying in my own comfy bed... and now I'm back in the hospital, with pneumonia and who knows what.

Yeah, they just can't get enough of me.

We counted, and I was off the LDN for 9 days before all this crud started happening.  I'm just saying...

Anyway, it's going to be another two or more days of cable television, I guess.  Yay?

Note:  No, Sam, not all hospitals in the US serve decent food.  The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible.  Scott occasionally sneaks in a sandwich for me, bless his heart.*  Thank goodness for family support!

*I've been eating very little for a week, and my weight has gone slightly up.  I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again.  Argh!!!


Partly Exciting, Mostly Boring

The big news is that I am posting this from the hospital.

On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.

We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!).  When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.

Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless).  As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help.  Yeah, thanks, that really was useful.

Anyway, I took the diuretic, and two hours later nothing had changed.  I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing.  I called the on-call line again, and this time got a doctor who actually cared.  She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.

I took a second dose and went to bed.  At 4am the pain became more localized to my inner thigh and groin, and was definitely worse.  I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.

So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.

Turns out I have a giant blood clot, from my groin to my knee.  And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects.  Faux expressions of surprise, anyone?

So here I am, in the hospital, bored to tears and pretty much immobilized.  My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.

If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).

The clot evidently is being caused by the cancer.  This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors.  Which brings me to the other news:

My scan results are back.  I have had a significant progression, with more active and larger existing tumors and several new ones added.  This is not surprising news, really, but it is depressing.  We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.

So.  I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now.  I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.

What's with the holiday season always coming with bad health news?  Diagnosis, progressions, they all seem to come at that time of year.  I'm not liking that pattern...



Old Year, New Year...

It's been a while, so I'll catch you up.

After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up.  But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month.  With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.

So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain).  I've never had serious pain with the scans before, but the CT scan was an agony this time.  I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out.  On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down.  When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.

I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future.  I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not.  There are times when knowing the answer IS worse than not knowing for sure...

The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day.  Often none at all.  Added to this, I became nearly completely bed-bound.  Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.

As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me,  since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).

On the bright side, Christmas was family-filled and everything that Christmas should be.  I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends.  If one has to be in pain, you couldn't ask for better distractions.

More later...