Thursday, June 28, 2012

Brief, but critical blog update...went to see Dr. McCourt today.   We had to wait a bit, but it was totally worth it!

She said that the CT scan they did last week showed that the fluid in my abdomen has decreased, the lesions that they have been watching are stable and NOT large enough for me to qualify for the clinical trial drug that I was supposed to start today.  She also said that my CA 125 level has DROPPED from 245 to 100!   And that was when I was NOT getting any chemo!   I haven't had chemo since May 17th.

She doesn't know what to recommend for chemo for me now.  She doesn't want me back on the Avastin due to the high risk for bowel problems (perforation)...and the fact that it appears I've already had a GI bleed of some sort---which led to the last trip to the ER, which in turn, started this whole "cancer-is-spreading-even-though- you-are-on-chemo-scare."  She doesn't understand why I'm still having the diarrhea problems and the bowel pain.  She questions if it's due to adhesions, which I have questioned myself.  So, she's wondering if this whole episode of rising CA125 levels, fluid in the abdomen, etc., is due to inflammation from whatever is going on with my bowels, and nothing to do with cancer spreading in the abdomen.

I told her I liked that line of thinking and we agreed that I will contact my GI and get in to see her ASAP. 

She also recommended an eight week "holiday" where I don't get chemo and then we do another CT scan and bloodwork and see what happens.  If the lesions grow then at worst I qualify for the clinical trial and she's sure there will still be a space for me.  If the lesions don't grow, then maybe I continue my "holiday" and we just go month-to-month to see what happens.  If the lesions grow, but not enough for the trial...we decide what chemo I will go on.

Whatever happens in the future, I HAVE THE SUMMER OFF FROM CHEMO!   I plan to make the most of this "vacation"...I have a lot I need to do on the bathroom project and we have lots of plans for RVing this summer. 

I just have to watch for any of my tell-tale symptoms...fatigue, bloating, pain.   Piece of cake. 

I am still trying to process all this new information.   I have gone from being bummed about being told that the cancer was growing despite the this...and it may sound strange, but I don't feel quite as happy about it as one would imagine.  I know Sandy is ecstatic and I should be too....but I'm not there...yet.   I would say right now that I'm "cautiously optimistic."  I think that given time to process and understand more I will be appropriately ecstatic.  It didn't help my mood today that physically I felt ill and mentally my head was 'fuzzy."   As the chemo continues to get out of my system, these physical and mental feelings will diminish. 

We decided to celebrate by eating out at Olive Garden...which will make some of this blog's readers cringe...but it was a good meal.  Then we went to F W Webb in Waterford and spent big bucks picking out great faucets for the shower and vanity and all the accessories--towel bars, grab bar, hooks, etc.  I LOVE the things we (I) chose.   Sandy has the good sense to throw in a comment here and there and then stand back and let me decide.  What the hell, I'm paying for the whole thing!   Anyway, that bath is going to look MAHVELOUS! 

I said brief update, but now I'm rattling I'll end with...


Monday, June 25, 2012

So, I'm wrong about when the work on the bathroom will start.  I had asked the contractor three times about a date and he consistently told me that the last week of June was good.   So you may remember that I went to the RV park and reserved a spot for a week, so we could move out of here while they ripped up the bath.

Well, he came over the other day to go over the details again and I learned some things...some of them good and some of them not so much...   First, work will start the second week of July.   I'm out the $150 I put down as a deposit on the campsite, as I didn't give them at least 14 days notice of the cancellation. 

Second, the wall board won't be torn out.  It's the right kind of board and he feels confident he can smooth it down enough to paint it without having all kinds of spots and bumps.   This will save me a boatload of money.  The wallboard isn't expensive, but he would need an awful lot of it....due to the different angles and height of the room.  So, I save more than the $150 I lost on the deposit.

The job is going to take at least two weeks.  Four days for the contractor (I'll stretch that to five...knowing what I know about how guys work) and a week for the tile guy.  I didn't realize that the guy I've been working with is NOT going to be the one to put in the tile.  The tile will be installed by the guy from Colonial Carpet and Tile.  That's fine with me. 

I saw the estimate from Colonial and gulped, hard.  I went a bit over my budget for the tile.  That's all right, I absolutely LOVE the tile we picked out. 

Now I have to get to the store to pick out faucets, shower heads, drain, towel bars, toilet paper holder, lights for over the vanity, etc.  I also have to pick out a shower door.  I'm not sure if I can order that before the shower is built and they build accordingly, or if I order it after the shower is done.  I think the latter is the safest bet.

I have prepped and base coated the vanity and it looks great.  I'm waiting until after the vanity top (which is now sitting in my garage) is installed, before I do the glazing technique and put the seal coat on.   I'm trying to think ahead and if I wait, I can repaint if there are any dings or marks put on the vanity when they remove the old top and install the new one. 

As Charmine said, the bathroom renovation is a process....and it's processing!  It will all come together soon enough.  By the end of the summer we will have a new bathroom.    Of course, last night Sandy said she would be happy just to get rid of the horrid carpet and horrid shower door.  She could live with all the rest...I said, "now you tell me."   But I couldn't live with all the rest...the wallpaper, the vanity top, etc. 

We had a wicked, wicked thunderstorm here this AM.  It has really cooled down from the high heat we had last week.  I'm glad we are not in the RV at the that little change of plans worked out for the good. 

Oh, I had my CT scan Friday.  Then went over for blood work and then upstairs to meet with the nurse regarding my appointment for chemo this Thursday.  She was supposed to tell me when the appt is and also what to expect, as far as how long the infusions will take, what premeds I'm supposed to get, etc.  Well, I went up there and let them know I was there.  I waited 25 minutes and no one had come out.  I had to get to Trader Joe's and then to my reflexology appointment, so I just got up and left.  I wonder if she ever came out to look for me....

So I go Thursday.  My appt with the doctor is at 11am.  I have no idea when my chemo appt is but I'm assuming it will be sometime after I see the doctor.  Sandy is coming with me for this appt.  Maybe she can go to work early and then come home and get me.  She can bring her computer and work while she waits with me....but I hope we aren't there all day.

What I'm really hoping is that I don't have to get benadryl IM before my infusion.  If I can skip the benadryl then I should be able to drive myself home from the appt...which means I don't need someone to come with me.  This would be great.  I feel less like a sick person and it means that Sandy doesn't have to take time off from work.  She hasn't claimed FMLA for over a year now and now she may have to get the paperwork submitted again. 

I also don't know who I will have for a chemo nurse.  I hope I can keep Little Anne Marie...but if I can't have her I would prefer to have Sandra...which I can't believe I am saying.  I used to despise Sandra when she worked on the other wing.  Now that she is out of that wing and away from that other toxic staff, she and I get along just fine.  She is a competent nurse and that's what I'm looking for.  I've had enough of incompetence, thank you very much.

Sandusky guilty....go to jail.  John Edwards...get lost.   Howard Stern RULES!!!