3 weeks out

With 3 weeks passing since I got out of the hospital, I'm feeling better. I can take a daily walk now. I feel pretty normal except for being weak and having some numbness in my hands which gets worse sometimes or with use to hold things or type. The worst thing which was exhaustion with modest effort is about gone.

Post-hopital treat

Here's what I got, besides a new recliner, for enduring all this! It's a killer laptop with the fastest video card for games and a giant 18.5" monitor. Click here.

Scan

I get scanned 6/23 and see the doctor 6/30. Cross your fingers!

On the mend!

Hospitals are behind me for the foreseeable future and I'm getting a little bit better day by day but it will take many weeks to be up to par.

Out of the final IL-2 hospitalization!

I took a bad turn after my 4th and final dose. I had episodes where I could not breath and almost passed out. The IL-2 and general hammering of my body by IL-2 seems to have brought out a rhythm problem with my heart with the top and bottom half not communicating properly. They had to put in a pacemaker. This was very disturbing in that nobody in my family has ever had a heart problem although the procedure was very easy and non-invasive.
I'm out now but very weak from IL-2. It will be days or weeks before I can walk easily. Walking is a chore now since IL-2 effects are cumulative and I was not 100% when I went back in 2 weeks ago for week 3 and maybe 20% recovered when we started week 4.
Now it is time to wait and recover and see how it did!

Final IL-2 week

I've had 2 doses and they skipped one due to blood pressure. They've got the pressure up so we'll probably do 1 more dose. I'm weak and hyperventilate easily. I probably come home wed or thurs.

8 dose side effects

I got home pretty weak. I think it's from 20 lbs of water weight which will probably take a week or so to shed. Food tasted weird but during the night I made a quesadilla and it was good. I had not kept any food down all week so it's nice to see one side-effect go away. It's hard following the advise to drink lots of water when you have water weight but on all accounts that helps you shed it.

Apparently an hour after I left the internet went down at home. Tim called our neighbor Julia, who babysat me this week also (at the hospital) and she brought her IT skills to bear to find that while cleaning they had turned the power bar off that has the modem and router. Cheri (every night), Debbie and Dane also babysat me and they all did a great job helping me get through the experience. I only realized how good of a job they all did when Cheri had to work Friday and I was there alone hoping to get out ASAP (which ended up around 1pm.

That was actually dose 8. The doctor says that we're done for this week so now I have to recuperate enough to go home. Friday or Saturday I'd guess.

Skipped one dose but I got dose 7 at 7am.

Day 3

Blood pressure up and down. Weakness bad but not as bad as last time. Not holding food down at all. 6 doses so far!

checked in

We got checked in and hooked up. My first dose is coming up soon!

IL-2 part 2!

In a few hours I check in for the next round of IL-2. No more Starbucks coffee every morning! I've got my netbook and mp3 player packed up to keep me entertained with a bunch of podcasts and books downloaded to my newly improved player that now holds 16 gigs! I'm packing a lot lighter this time since I know what I'll feel up for while I'm weakened. Just when my muscles are coming back: kapowie...back I go. Darn. Or yay?

Today will be my last 3 mile daily walk for some weeks. Then its back to the recliner for tv and listening. I still have some numbness in my hands but it's much better. I'm typing now with no increase in numbness although my right hand fingertips are a bit numb. Endurance is still reduced but it had been slowly improving.

I had my last meal out pre-IL-2 yesterday with friends Bob Madore and Bill Newton. A chili-size burger at Keno's--it was very tasty and they were entertaining to dine with as usual. Cheri got me a cinnamon roll for my last home breakfast. After these two IL-2 weeks I'll have to start eating better for the long haul back to normalcy!

So will the side effects hit me right away and limit me to a few doses or will we start fresh and go all week?

Second phase of IL-2

My scan last week showed 5 tumors: 3 shrunk and 2 grew. The doctor suggest that I do the other rounds (week on, week off, week on) of IL-2. On 4/21 I will get a PIC line put in and on 4/25 I go into the hospital to get started. Doctor Quinn doesn't know if the problem with the doses lowering my blood pressure will come back again right away or at all but they'll give me what doses they can and as long as it kick-starts my immune system, which even a few probably does, then we should see results.

Partial response

I talked to the doctor's assistant and she said that I had a partial response to the treatment and that the doctor would like to proceed with the next round of high dose IL-2. There was some shrinkage and some that stayed the same. I go in today with Cheri to set the dates and get more details. And we'll have to hit Phillipe's french dip sandwiches on the way back!

Insurance

My insurance has seemed pretty correct about what it pays except one CT scan at the beginning (9/24/09). They redid it 6 times and it came back the same every time. Their rules are complex enough that the clerk you call for help would say that it was wrong and promise to redo it but it somehow came back unpaid every time. I finally filed a grievance when they sent a letter saying they were denying it and they came through and paid.

I've had a bunch of Explanation of Benefit forms come back for this year now so I need to fill in a spreadsheet to see how they look because a couple have some amount that they are not paying. It could be proper but I need to audit it.