Pain Management Merry-Go-Round

(WARNING: TMI alert for this post!)

Thanks to all of you that sent notes, calls, and well-wishes this week. Sorry I haven't been able to get back to you and thank you properly, as I've been caught up in a pain cycle I wish I could get out of.

I have a couple of good hours a day (like right now), and then my bone pain starts up again. I have a variety of escalating remedies I can take for it, but I always end up (unfortunately) with vicodin. Even with that I am still sometimes crazy with pain at night.

The vicodin makes me really constipated...and the bone metastases also make me really constipated, since they dissolve bone material into my bloodstream. Together, both processes make me painfully constipated, which just adds to the cycle.

Two days ago I felt good enough to take a long walk...but I started feeling a dull ache near my perineum, and have had blood in my urine ever since. I have a call in to the doctor to see if there's any immediate action I should take. (I hate wasting the perfectly good blood transfusion that I got just last Saturday!)

Once I'm able to decrease the pain, I'll be able to evaluate whether this dear old body will be stable enough to move into an apartment on my own. For the past few days I haven't been very sure about this.

Where I Stand Now

One week after returning from treatment at Hope4Cancer in Mexico, here's where things stand:

I'll follow the two weeks of treatment at the clinic with eight weeks of home treatment by ultrasound (more on this in a later post)

My anemia has become very severe. My hemoglobin level has declined to 8.72, which means that I am ridiculously weak (like can't-make-myself-get-out-of-bed weak). Fortunately I'm getting a blood transfusion today that should make me feel much better for a few weeks (the last one helped me out for 5 weeks).

My appetite is also in the tank, and it's been hard to force myself to eat anything substantial. Being in the clinic helped, but now that I'm home it's a bit hard to reproduce that kind of regular, encouraing routine! The blood transfusion today should also make me more hungry.

Liz has decided that she shouldn't / doesn't want to commit to our relationship, so we will be going our separate ways.

Accordingly, I want to extend a heartfelt thank you to those of my friends that have stood by me and offered their assistance -- thank you all so much! Your kind thoughts and offers have helped immensely and I love you dearly for it.

UPDATE (4/27): the blood transfusion helped tremendously -- both my energy and appetite are much improved -- yay!

oops, a little blood leak...

The last week or so has been pretty interesting...in the sense of seeing new phenomena in my body that I'd rather not see.

I started losing some blood through my urine...not painful, but I'm really not used to seeing something the color of Hawaiian Punch in that neck of the woods!  At the same time, I started becoming noticeably weaker -- by mid-afternoon every day, I really needed a nap.

Blood tests showed that my red blood cell count was dangerously low (10.2) -- I was suffering from anemia.  The doctors originally thought it was due to a urinary tract infection, and gave me a round of antibiotics to combat it.  This did nothing.  I came up with a more likely cause when I noticed a bruise developing at the bottom of my ribs. My hypothesis (admittedly nothing more than the opinion of a *very* interested layperson) is that the metastases growing on my ribs were causing some internal bleeding, which was being siphoned off by my kidneys into my urine.

I got a blood transfusion last week at Alta Bates, which helped my strength somewhat. And fortunately, the (external) bleeding has completely stopped.  I never was in any pain -- but it was a definite (and STRONG) reminder that I need to get myself into a powerful treatment program ASAP!

uh-oh, problems are advancing

I had a visit with Dr. Sunkara's team today, and it reinforced my sense of urgency to find (and start!) another treatment plan very soon.

My PSA has jumped to 659. That doesn't have an impact on me by itself -- it just means I have a lot of cancer floating around my system. What worries me is my low (and dropping) red blood cell and platelet counts. I'm coming in to the doctor's office to have them tested every week or so; when they drop below a specified level, I'll need to get a blood transfusion to boost my red blood cells. This will actually be great, as I am starting to feel very weak in the afternoons because of the anemia.

I definitely want my next treatment to get started before I get stuck in some hospital hooked up to a machine. As long as I'm ambulatory and independent, there are things I can do to put the cancer in check.