I wrote quite a lot in this blog about this last legal case of mine, and it is nice to see an article about it in the Chicago Reader as the ruling in the case becomes imminent.
Interesting the article also picks up a lot about my cancer fight, and even cites this blog several time. Here’s a link to the Chicago Reader Article.
On the other hand I think the article underplays the importance of my friend Micah Marcus, one of the brightest young litigators at Kirkland and Ellis.
Well…Thanksgiving left us with a bit less to give thanks for. I made the best turkey ever (Thank you Alton Brown of “Good Eats.”) And Alex had exactly none of it. Nor did he keep anything down that day at all (or for the 2 days prior) so it was back to LGH for better meds than we have at home and hopefully some sort of explanation.
Better meds he got. As for the explanation: 1) Still chemo side effects due to lack of proper kidney function and clearing of the poisonous substances from the body. 2) *shrug*
He’s still quite weak and can’t really walk anywhere. Oxygen, on occasion, seems to help him feel better after a particularly violent coughing fit. He’s on more than one drug that has the ability to space him out, but I got to see a little glimpse of my husband this evening… A moment of humor. He has been spending so much time being miserable lately that sometimes I’m afraid I might not see the “real” him again.
I still have hope that there might be a little time left for him to enjoy something…anything.
This last round of chemo was especially brutal and left Alex very ill and weak (not to mention on a lot of anti-nausea/pain/anxiety drugs), so I’m writing for him. After two hospitalizations within a week and (according to the CT scan) not a damned thing to show for all the misery, we’re giving up on chemo and focusing on trying to get the best quality of life for the time remaining. We had discussed this concept between us, but somehow, having the oncologist basically admit defeat and suggest hospice was a particularly acute disappointment for me…as I’m sure it will be for everyone else.
They sent him home last Wednesday and a home health-care nurse came to bring supplies and show us how to administer the IV Zofran and Ativan. These seem to have done some good since now he can smell food cooking and even eat some without getting sick (sometimes). We are officially in the Land of No Fun…where we will most likely remain.
So there it is.
Told ya you didn’t want it.
I actually got out of bed when everyone else in the house did this morning. Usually I linger in bed as long as I can. For reasons unclear to me, all of the symptoms of the cancer and the chemo tend to suspend while I am laying in bed after waking up from sleep. Believe me, this is not a complaint. But it does make it incredibly hard to get out of bed, because I know that as soon as I do, the nausea, exhaustion, and torturous cough will promptly return to take over my life. This stay in bed inertia is so powerful, that I would probably miss all of my medical appointments without Celeste’s help and prodding to get me out of bed.
I completed the second infusion part of this chemo cycle. Now for a week and a half off. Or, for a week and a half of feeling the devastation brought on by the chemo. Depends on how you look at it, I guess.
One new medical thing: to try to address this out of control and unproductive cough, my oncologist has put me on some serious narcotics: the Fentanyl patch. This is the drug that requires you to be habituation to narcotics before you use it (to make sure it does not stop you from breathing).
I can’t tell if the Fentanyl is working yet. Maybe. But some of its side effects are interesting. I can space out like nobody’s business: I can just sit there staring at nothing in particular for a long time. Like a zombie with no hunger for brains or anything else at all. I *can* snap out of it when circumstances call for it, so this side effect is tolerable.
My mom is here again, and cooking up a bunch of Russian food, of course. I hope to be able to eat some of it.
Time for the second round of this chemo regimen, infusions, pumps and all. Yeehaw.
The weeks since my last journal entry have been brutal. The cancer itself is making me miserable now — gone are the days when chemo had the monopoly on that. Gone are the days when I could fantasize about going off chemo and having a few good weeks or months of life. Even without the chemo, I am profoundly nauseated, coughing my head off, exhausted, and often in pain. Chemo, of course, just makes it worse.
Celeste now hears me complain far more than I should. And the girls get to see me looking like a tired zombie much of the day. And now you get to hear me complain. Are we having fun yet?
So, my blood results from this morning were good. Certainly good enough to start chemo again, and so we did. In fact I am now wearing a 24 hour chemo pump (5FU) which I will exchange tomorrow for another 24 hour chemo pump.
I felt pretty awful going into this chemo session. The benefit of that is that I can’t say I feel any worse on the chemo. So far.
And there’s an open question of how much of the chemo will get sucked out of me at dialysis tonight. It’s a mystery.
In other news, Celeste has been suggesting that I start writing something that the girls will read after I kick the bucket. I think that’s a good idea, but it is beastly hard to get started. I have the whole death thing worked out, except for the part where I become something missing in the lives of Charlie and Anya. That part’s hard. And thinking about what I want to say to them from the grave makes me confront that hard issue head on. Mostly, I think the important part is really just being there — and that’s something no amount of words can accomplish.
I will think about this some more.
“Shit.”
“Damn, damn, damn.”
These are the words of my oncologist while looking at my latest blood lab results. For some reason, my white blood cell count has totally plummeted over a 24 hour period. I want from 3.3 to 1.6 WBC and from 1.7 to .6 absolute neutrophils. I have not been on chemo since Sept 15, and I’m not on any other drugs that can explain the plunge. Nor can I begin the much needed chemo while my levels are so low.
One theory is that I have a blood-borne infection due to the catheter. Blood was drawn for a culture to test this theory two days ago — so far, no growth.
One other clue is that during that 24 hour period, I experienced an episode of profound chills — I was under two blankets in the house, wearing a sweater and a wool hat, but I was nevertheless shivering like mad. Not a good sign.
Anyway, I’m on neupogen, a drug used to increase white blood cell count in a temporary fashion. The goal is to start chemo on Monday.
As much as I hate chemo, I really need to get it started. The cough connecting with the lung cancer is getting worse and worse. Not good.
Today’s numbers look pretty good. Hemoglobin at 10, platelets at 215, WBC at above 3, LDH 212. So, I’m ready for the new chemo tomorrow. It is also fairly clear that my numbers are affected by chemo, not TTP/HUS at this point. So I’m going to push for no more plasma exchange.
My mother flew back to St. Louis today, after a more than two week stay with us. It was wonderful having her here — and not just for all of the cooking, cleaning, child care. She is really pleasant to spend time with these days. She has offered to come back in a few weeks, and we’ll likely take up that offer.
Tonight is a dialysis night. That’s not so bad. Here’s how it tends to go: I leave home around 9:00 pm (I drive). When I get there, it takes about ten minutes to get hooked up to the machine — the catheter needs to be flushed with saline several times to prevent clotting. Then the dialysis nurse and I spend several minutes talking about Russian food and parenting issues. (She too is a Russian immigrant). That usually brings me to 10:00 pm — time to watch Family Guy, which I find *hilarious*.
At 10:30 I take some sleep drugs and listen to music on my ipod through noise canceling headphones. I also don a mask to block light. Then next thing I tend to be aware of is the morning shift staff showing up to set up machines. This happens around shortly before 5:00 am. At that point, I”m close to done. Shortly at 5:20 am, I am disconnected from the dialysis machine and drive home. The drive only takes about ten minutes. I then tiptoe upstairs, climb into bed with Celeste, and sleep for as long as I can.
That doesn’t sound all that awful, does it? But it is still somewhat brutal to have to leave after the girls go to sleep three times a week. Hopefully, this is temporary.
I have developed a strange craving. Lemons. The nice thing is that they are fairly low in potassium and sort of satisfy the craving for oranges, which are very high in potassium. So I have been eating lemons. Celeste just mentioned that I can pour some sugar on them, which had not occurred to me.
