MPDL 3280A - Back from Nashville #4

pjune127 said:

Back to Nashvile

Ater 2 terrible weeks of feeling dizzy, fainting., not eating and basically wasting away, I finally pushed myself forward ( with the assistance of screaming frantic family and friends) and went to my Atlanta doctor and asked, WTF?  Am I dying? After fainting out cold 4 or 5 times in 2 days, enough was enough.  So off I trotted to my oncologist here and evidently after describing my "out of touchness" and noices/voices I was hearing, the culprit was Calcium  My Calcium was 12.1.Yesterday I spent half the day in lab, along with half the day Tuesday.  Got 1/2  hours worth of Zometa and I am a new person.  In order be really cool, I had given marinol a whack, but  was already feeling wacky, so for the last 4 days I have used Megace and actually woke up hungry today

Now I am waiting for th 9-9:30 phone call with whether or not I need to have another zometa based on the balanced after yesterday' blood draw AFTER the infusion.

And then. I go to Nashville for further examination and evaluation.  I do hope this present good feeling I am having is way more akin to what I should have been feeling this last week.  Am anxious to go and be back and feel relatively normal.

 

I do know I have pretty much slept away 2 weeks without really enjoying it.  I plan to make up for that in one way or another!   Love you all.  Will get back to you after doctor appointment on Friday.  Need some good news as my positivity is flagging

Paula XOXO

Paula, sorry you are having it hard. But you can do this. You've demonstrated tremendous fortitude and are one tough chick.  It's all just a test. I can't see you not winning. Better times are near. FLY.

pjune127 said:

Back to Nashvile

Ater 2 terrible weeks of feeling dizzy, fainting., not eating and basically wasting away, I finally pushed myself forward ( with the assistance of screaming frantic family and friends) and went to my Atlanta doctor and asked, WTF?  Am I dying? After fainting out cold 4 or 5 times in 2 days, enough was enough.  So off I trotted to my oncologist here and evidently after describing my "out of touchness" and noices/voices I was hearing, the culprit was Calcium  My Calcium was 12.1.Yesterday I spent half the day in lab, along with half the day Tuesday.  Got 1/2  hours worth of Zometa and I am a new person.  In order be really cool, I had given marinol a whack, but  was already feeling wacky, so for the last 4 days I have used Megace and actually woke up hungry today

Now I am waiting for th 9-9:30 phone call with whether or not I need to have another zometa based on the balanced after yesterday' blood draw AFTER the infusion.

And then. I go to Nashville for further examination and evaluation.  I do hope this present good feeling I am having is way more akin to what I should have been feeling this last week.  Am anxious to go and be back and feel relatively normal.

 

I do know I have pretty much slept away 2 weeks without really enjoying it.  I plan to make up for that in one way or another!   Love you all.  Will get back to you after doctor appointment on Friday.  Need some good news as my positivity is flagging

Paula XOXO

Hey Paula,

Whatsa couple rough weeks or months compared to what awaits?  Keep your eye on the prize, you have proven you are tuff enuff to do what ever it takes, when you've gotten down you've always responded with WTF and got back up even more determined than before.  You are a warrior with the battle scars to prove it, this dragon has no chance against you.  Hang in there, we're sending every ouce of positive energy we can muster your way.

Can you feel it,

Gary

I am alive said:

Travel tales

Paula,

  I'm sorry you're not breezing through this round  but thank God your family & friends got you up and out the door and on your way to Atlanta/Nashville. (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?) I'm not a super religious person, or very religious at all, really, but I do believe in grace and I think it is all around you. You'll ride this out.   I can't believe you fainted 4-5 times and never called the doctor!!!! You ARE  one tough chick. But don't do that again. We don't get gold stickers for not bothering the doc. Glad to hear you're feeling better, and thanks for sharing your journey with us. (I'm not really fond of that word - journey - to describe the road we're all on. I guess because it connotes "choice" and none of us chose this. But I can't think of any better word. Plain old "experience" ? Seems clinical. Any ideas?) Onward!

Not the only connotation though, Peg.  Our 'journey' isn't chosen - it's a route march! 

However, while on the march we do have choices, one being to give up, lie down and die.  We can all rejoice that Paula is made of sterner stuff, makes the right choices and even when they're tough choices she has the guts to stick with them, which is just one of the reasons we all love her and will keep 'rooting' for her!

alice124 said:

Dear Paula

So  glad you have given us an update. Have been worried, and have come in here several times with the intention of contacting you only to be frozen in place, a SE of the CSN upgrade I guess.  Will anxiously await your next report reflecting more (and improved) normalcy. Your family and friends were so  right in pushing you to be more aggressive with your doctor; that fainting has got to stop. But hope this is just one more  bump on this unpaved highway. And knowing your drive, determination, and courage that's what we're talking about--right???

Looks like you and John will have a stockpile of the Marinol, "wacky" was one of words he used to describe his Marinol experience too. (But then when I think back, didn't we used to call it wacky weed? Fox????) Take care of yourself.

Soulnergy with you Paula.  XOXO

Why are you asking me?.........HEY, PASS the CAKE!!!!!!

I am alive said:

Travel tales

Paula,

  I'm sorry you're not breezing through this round  but thank God your family & friends got you up and out the door and on your way to Atlanta/Nashville. (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?) I'm not a super religious person, or very religious at all, really, but I do believe in grace and I think it is all around you. You'll ride this out.   I can't believe you fainted 4-5 times and never called the doctor!!!! You ARE  one tough chick. But don't do that again. We don't get gold stickers for not bothering the doc. Glad to hear you're feeling better, and thanks for sharing your journey with us. (I'm not really fond of that word - journey - to describe the road we're all on. I guess because it connotes "choice" and none of us chose this. But I can't think of any better word. Plain old "experience" ? Seems clinical. Any ideas?) Onward!

that I wanted to address for some time.  You say (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?).  And to this question I say with total clarity and experience - that you cannot take these drugs, undergo these treatments, manage all of this - alone. This is the situation that I am in - I have no family close by - I do have great friends who are my angels - but they are caregivers for their own elderly parents and are stressed to the max with those things.  They do everything they can to help me, but basically I'm walking this road alone.  After being on Sutent for 18 days and so sick I wanted to die - nausea, diarrhea, fatigue and weakness,mouth sores and, in my situation, plummeting blood pressure (instead of raising) until I too fainted flat on the floor, alone.  I did call the on-call doctor and was told to stop the drugs and head to the ER if my blood pressure didn't normalize within an hour or so.  

Next time I saw my oncology team I said, very honestly, that I didn't think anyone could fight cancer alone.  You cannot drive yourself to your appointments sometimes because you're so wobbly and weak that to drive would be dangerous.  You don't eat or drink much because you're so exhausted that even standing 5 minutes to make a sandwich takes too much energy.  Showering is scary because you feel you'll end up on your back in the bottom of the tub again because you're weak and too tired to care.  Surprisingly my doctor and his team listened to me and agreed and now they/we are treating symptoms and issues as they come up and I am living my life as thought I don't have cancer and doing really really well.  We're now looking at a couple of other treatments that may keep my going for a much longer time but without the drugs.

Also, and totally in my humble opinion, remarks like this: "while on the march we do have choices, one being to give up, lie down and die" do nothing but alienate people from this board and it actually feels like a line has been drawn in the sand to say - 'if you don't fight this thing, you don't belong here - you're an embarrassment to all the warriors and survivors who post here' (my remarks, my feelings).  It is this type of attitude that keeps me away from here most of the time - I don't need to be totally ignored because I'm not waving pom-poms at everyone - or feel that those of us who have chosen a different path get 'cyber slapped' because we're not 'fighting the good fight' that somebody else, in entirely different circumstances, determines everyone should do.  Nuff said and I apologize for getting off topic but I did respond to comments made 'on topic'.

LB and STILL NDY!

Texas_wedge said:

Alienation

Liz, I'm sorry if my post reads that way to anyone - I was intending simply to convey the message that no-one should lose heart and I've often cited you, Donna Lee and Paula (plus Fox and others, of course) as examples who encourage others to put their best foot forward. .

Maybe my condition/drugs are causing me to become insensitive? I seem to be going 'off topic' and offending people these days, so I guess I ought to try to get a life and withdraw from posting on CSN. 

Dont you dare withdraw from us Texas,you are fine just the way you are,your drugs and or condition have nothing to do with your opinions it is just the way you are and i mean that in a nice way.I  know you hate this disease and you care about every one here so please keep posting and if you offend anyone we all know you you meant well so deal with it.

Limelife50 said:

Shut up Texas

Dont you dare withdraw from us Texas,you are fine just the way you are,your drugs and or condition have nothing to do with your opinions it is just the way you are and i mean that in a nice way.I  know you hate this disease and you care about every one here so please keep posting and if you offend anyone we all know you you meant well so deal with it.

I picture you as the loveable, sometimes curmudgeonly professor who has a big heart and a short fuse which he struggles sometimes to keep in check. Don't you dare leave us! Who would keep the balls in the air? Who would drill so deep on issues? Who would broaden our vocabularies? You got cyber slapped today. It happens. The choice you make in response should not be to lay down and die now, should it? I do thank Liz for her comments on living alone with cancer and choosing a different path, and I can understand how she and others might feel like an outcast among Pom Pom wavers. I feel I'm at the beginning of metastasis world and have no idea how I will cope as time goes on. I came to this board to learn what is in store for me because doctors don't like to spell things out unless they absolutely have to and Internet info is stark and terrifying, and also doesn't tell you what your day to day life will be like. It was in getting to know the people on this board - you in particular, Tex, since we both have chromophobe and not many others do - that I began to have a clue, and a handle on what might be in store. It is a HUGE service that you and everyone else on this board does. It's like helping hands out there in the ether. I'm in the Pom Pom phase of things right now, and if I get a bad CT result next Tuesady I'll be posting on this board. I sure hope you'll be there, Tex, to console and encourage me, as I hope to do for you when you get your first CT result with Votrient. who