Fruity Pebbled Pickled Peppers and PET Scans

So I am writing from my crackberry because I’m too lazy to sit at my desktop, my laptop is so slow it’s annoying me, and I wanted to be able to write before my temazepam takes it’s last swing on me and I am out for the night. As I mentioned in last nights post, I have been way out of it the past few days. Today has been much better - but I am still in a dizzy phase. Constantly dizzy, at least it’s a fun dizzy feeling… This post is mainly to serve as a daily recap of things going on right now.

My tastebuds are pretty much nonexistent at this point. Can’t taste anything, (wow I fell asleep writing this… Good morning!) On Moday I was having a problem with everything tasting off - mostly like black olives, which I hate - but Tuesday, the taste seems to diminish to nothing.  I guess this is a common side effect of chemo, it’s ok - it’s just hard to quench any cravings I get.

I ate a lot too today.  I used to eat about nothing, maybe a day or 2 between meals, and if I did eat anything it would literally be about 4 or 5 bites and I was done.  I guess it’s the Prednisone changing that, being a steroid and all.  This was my menu for yesterday:

Before work - A Whopper with heavy mayo and onion

At Work - A peanut butter and jelly sandwhich, with a bowl of easy mac (mac n cheese) and then nachos and a taco from Taco Bueno.

At Home - A handful of salt and vinegar, some red chile beef jerky (usually can’t stand the stuff because its too hot - ate it like a champ not tasting a thing!), a plate of fettucini alfredo, 2 pieces of pineapple upside down cake, 2 glasses of milk and 2 bowls of fruity pebbles.

I have been trying to eat anything overly salty, vinegary, hot, or peppery, or sweet.  Just so I can attempt to taste SOMETHING!   Last night with the fetuccini I tasted some of the mound of salt I put on it, wasn’t the nice creamy white oozy sauce I could taste, but hey, beggars can’t be choosers.

I have also been having a lot of concerns, since my onc changed me from the standard ABVD chemo regimen that I was supposed to be receiving to an older treatment call MOPP.  In the beginning, I couldn’t receive the Bleomycin (B portion in the ABVD treatment) because my pulmonary function tests said it was too dangerous to have for my “ailing” lungs.  There is some contreversy, however, because some receive A_VD (without the Bleo), but instead of doing that, he has completely switched me to MOPP.  From the beginning, I have questioned whether or not this would be a wise choice - he seems to think so, along with the collegues he has consulted with.

Well, to skip back a bit - one of the huge “B-symptoms” of The Hodge, that I was having was night sweats.  The night sweats cleared up the night after I had my very first A_VD treatment.  Since being on MOPP, they have returned.  This leads me to worry whether MOPP is working or if my disease is progressing.  I have been freaking out, if you will, for the past 2 weeks or so how to go about getting all this checked out.  Apparently, there are studies showing that A_VD has been a successful cure, as has MOPP mind you, but A_VD has less long-term side effects and shows to be just about as effective.  So why the drastic switch?  And now, especially with the night sweats, is this the best choice?

My onc wasn’t wanting a PET Scan until about the middle of August, but I’m not sure I can wait that long.  I think I will go insane.  I have thought about getting a second opinion, but then worry about any issues that might arise from that - I’m not trying to insult the man, he is an amazing doctor.  I just want to make sure I’m ok, and not quite sure how to go about it without making feel like I am questiong his medical knowledge or ability.  I have talked to several people who have kinda helped me think through it along the way.  The most common take on it is, “we’re not talking about a broken toe, here, we’re talking about Hodgkin’s Lymphoma.”  Yes, very good point, and I agree.

So, I finally muster up the courage, and just called the cancer center.  I just plainly stated, to the receptionist on the phone, that I wanted to see what I have to do to get another PET Scan.  I thought this would be the best way to bring all this up - make it all seem about me.  She said she would have the nurse call me, and we went from there.

The nurse called and asked why I was worried.  I told her about the night sweats and I am just afraid that it wouldn’t work or wasn’t working and it was ruining my life not knowing and I have to know.  She, herself, was shocked I was on the MOPP.  Not as in, “why the hell is he doing that to you?!”, but more like “Wow!  You’re getting that?!  Hmm… Haven’t heard of that in years!”  I have also talked to people, and I brought up this point to her, that still have night sweats, even years after remission, but my worry is that they went away entirely, for about a month and a half and now they are back.  The fact that they came back is what is weighing on me.  She said called me back after talking to my onc, and said that when I come back this Friday to have my labs drawn, she will have me see one of his PA’s.  They will talk things over with me, and then talk to him while I am there, and we can go from there to see whether or not I can have another PET.  Hopefully it will be granted, if not we can go from there as far as second opinion, etc.  I also planned to go armed with some of the printed articles on the studies, so they can explain some of those better as to why the decision to MOPP opposed to A_VD.

As far as the dizziness this morning, it seems to have subsided some.  Thank God!  The past 4-5 days I have just been in this fog - couldn’t follow a conversation, or think clearly.  My sense of time had diminished, 10 minutes may as well been 2 hours, it didn’t have any bearing on me.  I also think I could have stood staring at a wall for 4 hours and I would have been perfectly capable of entertaining myself doing that.  It seems to not be so bad today - let’s see how the rest of the day pans out, lol, I have only been awake an hour.

So, I am off for the day.  Going to face another one, bravely…or…something!