Between the Devil ( the red one) and the deep blue sea
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Congrats on those TMs! Hope they are even lower after your vacation and those liver buggers disappear.
You look so hip with the short-do!
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Have fun in Florida! Happy 4th!
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If you want to see pics and my little commentary on my last trip to Florida , it is on the Spirited and Lively Older Women thread BarbA started.
Today, I am afraid I do not have any good news to post and although everyone thinks I am such a go getter and so positive all the time, I am not feeling that way at all today. Am once again in that sort of limbo state, not knowing what is next and I always hate that more than knowing.
OK, so yesterday I was supposed to get my treatment. The lst thing that happened was that I got a call from the onco's office at work to call them.....I thought it was probably to tell me what the results of the echo were and said Why can't they just tell me today when I go for treatment. So I called and the scheduler told me that they wanted to change my appointment since thre was not going to be an onco there when I was scheduled and I am not sure what this new rule is since they hospital took them over, but I know they aren't supposed to administer treatment with just the PA there for some reason and from what I gathered she was overbooked and wanted to get out of there.....my appt was not until 4 PM. The gal tried to tell me that we would just put it all off til my appt. next week and do everything then. I told her I was not comfortable with that since I get it weekly and she said I have down you get Adriamycin every other week and were just getting blood work today.....LIE....if that was true, why did they call to change it?....I said No, I get it weekly so she said Hold on a minute. She comes back and says Well, if it's alright we will just do it all next week when you appt is on Monday and I said that was not alright, that I did not see anyone last week and I was supposed to see a PA today....so she puts me on hold again and then the PA was actually on there for a few mins. but I think that was a mistake because then I heard the scheduler talking to a nurse who was saying, No she comes every week, she needs to come in and to make a long story short they told me just to keep my appointment. We went over this scheduling of appts in detail a few weeks ago when they told me all the Wednesdays were either booked solid or no onco was there so I am going on days like Monday, Tues, went Thurs last week....jumping all over the place, but I WAS to see someone every time except last week so obviously it is all scewed up.
Back to the heart of the matter.....what a play on words, totally unintentional.....:
I really rushed to get there on time since I sort of insisted that I did not want to change the appt and zoomed out of work with the assistant saying she would clean up my room for me......wouldn't have mattered as the waiting room was packed and they did not get me back til 4:45 to do my weight, BP, INR and all that jazz. The nurse sent me back to treatment and I looked around and there was not a chair in the place....someone told me to sign in and go back to the waiting room, but to be sure to write that was where I was so they could look for me. I am sure I was sleeping with my mouth open when they came to get me cuz I had dozed off. So they got me hooked up, drew blood for that CBC( white count was actually up for me, 4.9) or whatever that blood work is they always run thru before doing treatment, asked me who I saw, told them no one and then we went through that whole deal of Aren't you supposed to see someone at least every other appt?, let me check and get your treatment approved and see if you stay on the same dose of warfarin, blah, blah. The nurses said there have been some big problems with scheduling and they don't know what the problem is. I then made the mistake of asking what my Ejection Factor was and the nurse asked Have you had a echo or muga lately and I said Yes, yesterday morning and they said they would send it so she went to look for that. Well, it was 45-50 and I said that is down and she asked from what and I said well, I think it was 70 when we started and last time is was 60 and she said she thought they could do the treatment if it was 45 or above, but had to clear it. The PA had by this time left so they paged her and the nurse then told me after she talked to her that she (PA) was going to check with Dr.Cody....I asked how, he's on vacation and she said she was going to page him and I said I bet he will love that. I was listening when the call came back and she was telling him how I had not reported any SEs, but then again when I was in there last Thurs and had edema really bad in my legs and feet they made me go get that doppler on Friday checking for blood clots which I told them I did not have and the test showed I was right. I have had enough blood clots to know what they feel like and I knew I did not have one......I was surprised however when the tech told me there is still evidence of the clot I did have in Feb. or March or whenever that was...guess it was a rather obscure place, but it's still there....much smaller, but it takes forever for the body to absorb them. Sorry, back to my story........
They told me that they were going to put my treatment on hold until I see a cardiologist and that most likely I will be put on a beta blocker. I asked if then I can get treatment and she said she didn't know and that the PA will call me this morning. So they unhooked me and sent me home, a very disappointed camper. The nurse reminded me that both the onco and PA had discussed with me how heart damage is a possibility with Adriamycin and that is why they keep a check on the EF. Yes, I knew it, but I am still disappointed and want them to run the CA 27.29 and will ask for that today when the PA talks to me because I would like to know just where we are. And I guess the big question is Where do we go from here if I am no longer able to do Adriamycin?
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Oh sweetie!! Big hugs for you! What a crappy day yesterday and it doesn't look like it will get much better until you get some answers. You must be pretty anxious right now, but don't get ahead of yourself. Surely they can treat your heart while you get treatment? I mean, seriously??? I will be thinking of you all day and hope to read an update later....you are back in my prayers at number ONE!
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Good Lord, it sounds like they don't know if they are coming or going. I hope you get to talk to someone today who even has the slightist clue as to what they are talking about! Like Barbe says, don't get ahead of yourself. Sending a big hug your way!
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Marybe, I hope this gets straightened out soon! I'm sorry you're going through so much.
Leah
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Marybe,
All the uncertainty has to be so discouraging and frustrating. Hoping it all gets worked out and will put you in a better state of mind. Thinking of you.
Lane
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Oh boy Marybe! Could they have messed you around any more? I sure hope you get some answers and good news on the treatment front. Try not to go to the what if place.......hard I know............but right now it's not the place for you.
Hoping for better news.
Love n hugs. Chrissy
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Oh Marybe - I can only send hugs and hope that this mess gets cleared up - I hate when things get complicated and there's no one there to solve the problems.
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I got an appointment with the cardiologist on Tues afternoon and then they moved my appt from Mon to Wed at the onco's so I will have consulted with the cardiologist before I come in. Am still hoping that maybe we can continue with the A, but don't think it is likely. I asked them to run the CA 27.29 and they said they would....also told me my potassium is still low so have to keep taking those horse pills. Just knowing I have an appointment scheduled and will hopefully be getting some answers, makes me feel much better. Thanks everyone for love, hugs and prayers.....they always help.
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Let us know what you find out. More hugs! Ruth
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Hope you DO get some answers on Tues, is it someone you've seen before so you don't have to go through the whole rigamorale??
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Marybe,
Wishing you the best, always. And sending lots of love...
Rose.0 -
Hey Marybe, thanks for the update, good luck next week, keeping you in my prayers.
So glad I took that road trip last year & got to meet you (and the other ladies!) IRL.
Remember the Ugly Dog contest? And that really talented bluegrass banjo player?
Sending love and gentle ((hugs))
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Hi Marybe: I have been off the boards pretty much since I returned to work in March but have been lurking and keeping tabs on you. I sincerely hope you will be able to stick with the Adriamycin. You are in my prayers.
I am back out of work since developing a new lesion on my upper arm bone near my shoulder (barely even phased me this time-hmmm-it's something that this becomes normal). Everything else has been "pretty much stable". Sounds to me like those old lesions were gearing up for a bit of activity. So, I'm back on Xeloda and Taxotere.
All I could think of when I started chemo again was "Welcome back, my friends, to the show that never ends...."
I'm just thrilled I get up every day and am going on vacation Friday!
Praying for all. I see lots of familiar names and lots of new ones.
Love and hugs, Treso
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Treso, Laughed out loud when I read the lyrics , and I now have that going around in my head. You should check out the Lyrics thread, you would be good at it. I was thinking about this just yesterday when things were up in the air, how odd it is that rather then be happy about getting a break, it sends me into a panic,......how I who never wanted chemo, take comfort in the fact I am getting it ( I think it is just the fact I feel like we are DOING something, not allowing the cancer to be the one doing its thing). I do think we come to accept things, adjust both mentally and physically to how we feel and living with cancer just sort of becomes a way of life. I HATED the SEs I had with abraxane and that was one I quit even though it was working....I now find myself thinking, Hmmm, wonder if I could deal with it better if I do it again. I have some of the same SEs now, the nails, although at least this time they don't smell, the hair loss, the eyes matting shut, constipation......but I don't have the neuropathy and do not really want to risk that one again IF I can avoid it...........but I know at one point I said I will NEVER do that one again. I have learned that one should Never say Never. Have a wonderful vacation.
I have been to this cardiologist before, Barbe and like her. She is always very interested and concerned with my progress and treatments. When I was working at another office I was her husband's and his family's hygienist. I had an atrial myxoma that broke off and that was how I ended up having the need for a cardiologist and that is also the reason I am on warfarin. I trust her and if she tells me it is dangerous for me to do any more Adriamycin, that will be that......but I am still hoping....although who knows maybe when we do scans and get back the results of this latest CA 27.29, it may show it is no longer doing much. I have questioned why I am growing hair.....the onco doesn't know why either since it is supposed to be total alopecia( sp?) ......BUT I never have lost that durn arm hair!!!!.....I could almost braid it!
Badger, It is so great that we did the trip last year.....this year it would not have been possible as my one cousin is building a new house and his sold so he and his wife are now living at the lake. I think the banjo player was a bit surprised, but pleased when we all burst into song singing the Beverly Hillbillies theme......that proved music really is the international language since Chrissy knew the words ( of course they speak English there, but you know what I mean). That was definitely a fun time.
Well, must get ready to go to work.....just got done watering...still no rain here, but at least it has cooled off.
Maybe I am being overly optimistic, but I think things are going to be fine....everything happens for a reason. Also, with me if I have a little while to absorb things, they are never as bad as I think when I first find out.
Have a good day everyone and I will post next week to let you all know what I find out. Even if I have a bum ticker from now on, I will not regret my stint with the red devil because it gave me hope and that is what I feel we all need when dealing with the big C.
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Marybe goodluck with your appt((hugs))
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Marybe, have you thought about retiring again? You haven't mentioned it this year that I've read. You could spend some quality traveling time before SEs made you too miserable and then you could stay home and make everyone around you miserable!!
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Marybe,
Glad you have the appointments set for next week. It always helps to know that at least you'll be getting some answers. So, enjoy your little break from chemo and do something fun this weekend!!0 -
They finally called me with the results of the CA 27.29 today after I called again this morning.....were supposed to call me Friday and didn't and I honestly think they forgot to run it. Anyway.....drum roll, please............They are 325.8. I have mixed feeling about this....am happy that they continued to drop, but this makes me want to stay on Adriamycin even more than I already did and I know it sounds crazy, but I would be willing to risk heart damage (or more heart damage if this drop in the ejection fraction means that). I will find out tomorrow what the cardiologist thinks.....my appointment is at 1:30, but they are always behind so I am taking a book with me. Maybe they will do another echo....a friend of mine told me they can often vary from day to day.....her husband actually had heart failure so she knows more than I do about things like this. But isn't it absolutely amazing how much the numbers have gone down since I started on the red devil?!!?!
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Oh Marybe amazing it is! The red devil is certainly a powerful force - as for the heart damage - I had some evidence of heart damage after my treatment with adriamyacin(sp) four years ago and it has since disappeared but I wasn't on it for all that long - I'll keep my fingers crossed for you tomorrow.
Hugs, Sandy
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Let us know.
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Marybe, so happy for you!
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Amazing indeed! Good luck at cardiologist tomorrow. ((hugs))
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Holy crap Marybe!!! Maybe the cardiac damage just goes so far and then stops.... like a complaint or something. I just can't believe those numbers....I mean you were 10 TIMES that!!
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Marybe WOW!!! Those numbers are amazing! Here's hoping the report from the cardiologist is just as good!
Love n hugs. Chrissy0 -
Marybe - I do believe you win the prize, (if there was one
) for the largest drop of markers ever. I am so happy for you and I can just imagine the excitement when they told you, now if they can just tell you good news from the cardiologist. Way to go Marybe!!!!! 0 -
Yipeeee! at least I think it's yipee! The cardiologist was very encouraging.
I might get to stay on it....at least for another month. They checked my oxygen level with that little deal they put on your finger and it was good and my heart sounds fine and the cardiologist says she really questions the echo and says if in truth it is between 45 and 50, she feels it is closer to the 50 end. She said something about how they figure it with a percentage and it you figure it that way it is 50. So what she is suggesting since she knows I want to stay on this chemo is that we give it another month, she gave me two Rxs for meds that she said people will tell me are for high BP which for sure I do not have, but will help my heart pump..coreg and lisinopril....both low dose and one I am even supposed to cut in half... and then she wants to see me in one month and scheduled another echo right before she sees me. She said if I feel light headed or dizzy to call her and she will just have me take the one, not both pills.
If the EF has gone down at all when we do the echo in a month, she says then we will know it is time to quit the Adriamycin. She was going to go over all this with my onco, but I told her he is out of town and to talk to the PA, Amanda and she will call him like she did last week to see if he OKs treatment. So with any luck at all, I will get my treatment tomorrow when I have my appointment. I am just so glad they got me in quickly and if I do get to have treatment tomorrow, I will have only missed one. Who knows maybe they will decided to give me an even lower dose which would be ok, I just don't want to quit it now altogether since it has been working so well and I swear I do not feel any different than I did a few months ago...no shortness of breath or anything. So we shall see.
I was talking to one of my friends and told her I just can't believe this, here I am saying I REALLY WANT THIS CHEMO....to think I was afraid to go on it and to think even further back when I said I will NEVER do chemo.....just goes to show we should never say never. I am very happy.....so happy I think I will bake something to take to the nurses tomorrow.
As always thank you all for the hugs, support, and prayers. I wish you all could be here so I could bake something for YOU!!!
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Amazing result! I am so happy for you. Do you take Q-10? It's very good for you heart. I take 180mg/day that I can feel the difference. I am Sending you a big hug from the UK. Pbsom x
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Sounds like a great, smart, team playing cardiologist!
I wish you could bake something for us too!
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