Between the Devil ( the red one) and the deep blue sea
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Today I am actually thinking I will be able to take my trip. Had my appt with the PA yesterday and I was really winded by the time I got into the building just from walking from the car to the elevators and carrying a cake I had baked for the office in with me. I sat down and waited for someone else to come ring for the elevator and this guy was nice enough to hold my cake box for me and ride up to the 4th floor even though he was only going to 2 and then handed the cake over to me. They took my vitals, pulse was 110 which seems to be pretty normal these days for me and nurse who did it said Oh Honey, your pulse is racing. That's been a problem lately, even though the BP has been pretty good on the coreg, it doesn't seem to be helping my pulse at all.....it was never in the 100s before. So then I get back to see the PA and she goes over everything...says they want me to get an EKG, (the cardio nurse had also said this) to make sure my pulse was regular, she listened to my heart and breathing and said she could hear fluid which was no surprise to me. Said pulse is high cuz it is my heart having to work really hard. Asked why my hair is coming out AGAIN and she said because I have had my saturation of Adriamycin and my body is telling me that.....asked about the sores in my mouth, thinking it was thrush again, and she said that is from chemo also and I said, but it never happened before and she said, Yes, but I had just hit that point where a lot of things are going on all at once. Oh, and my INR was 5.4 and I had not changed a durn thing, was not drinking alcohol ( although I tell you I bet I say at least once a week, God, I wish I still liked to drink) wasn't eating a lot of spinach, wasn't doing anything different.....again she said it was just my body reacting to all that is going on. It was about then that I burst into tears and said, I am not going to be able to go on my trip, am I? and she looked sort of sad and said we have two months to get you into shape so don't give up. Then I said I waited too long, should have done this last year or in the Spring and again she said not to give up, that they certainly hope I will be able to go.
I asked is it OK if I go to work today and they told me it would be best to go home and rest so thankfully I got in touch with the sub and she came in and worked the afternoon for me. I didn't totally rest, but I did read my book and also watch some MadMen DVD's....I find that if I bend over to pull weeds or pick something up, it really gets to me, almost makes me gasp to inhale....and then I huff and puff. Get really out of breath when I do steps.
OK so I did the EKG and it really was no different from last year so that is good. I started on lasix and even though I still have that pressure feeling across my chest and am coughing, my pulse this morning was in the 90s and my legs look more shapely than they have for years and I am drinking water since they told me I was dehydrated and am peeing clear like they wanted me to. So I think the original diagnosis was correct, this is all due to excess fluid buildup. The cardiologist's office called and they are getting me an appt with the heart failure nurse practicioner since both the cardiologist and her nurse feel this is the person I need to see. I told them any time is fine so hope they can get me in within a week or so.
So to make a long story short, things are looking up. As is always the case with me just when I think it is the end of the world, things start looking up and I get back to normal. This is what my fortune cookie said ALWAYS A VALLEY BEFORE A HILL. How true.
Have a good day everyone. Tonight my friend is coming over and we are going to look at places we might like to visit inbetween the towns we are actually staying. I have most of the hotels booked already and am getting excited especially now that I once again think I will be able to make the trip.
Oh, no more Adriamycin and no chemo at all for at least a month....they said we need to get my heart back in shape and also let my body recover....sounds good to me.
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Sounds good to me too Marybe! Glad to hear things ae getting better and the trip looks like a go. See, just cry and you will get your way. I'm starting to learn that all over again with all these crying bouts lately lol.
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Your trip is going to be wonderful. You have enough time for some of the chemo effects to pass and to just feel better, all in all. It will be good when your pulse gets down to where it should be.
It is so nice that you meet people along the way to give a little assist when you need one isn't it?
Hugs Ginger
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Oh, Marybe, so glad to see your post and to hear that things are looking up for you. Whew, that's a lot of stuff going on with your body. A month off sounds like just what you need. When is the trip? It would be nice if you could wait to start chemo again when you get home from the trip. The break would be good for your body plus you'd feel better on your trip. Meanwhile, take it easy and get rid of that fluid!! Hugs!
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Phew! Marybe you had me really worried for a moment. So glad that you are doing sort of what you are told like sort if resting..,...lol. Hope getting rid of that fluid makes you feel better so you can enjoy your trip.
Love n hugs. Chrissy0 -
I just knew it was the fluid - it just makes everything so damned difficult - like breathing for instance - can't imagine what your sleep must be like but it's all going to be better now - glad you're getting a month off too. Now, what are the chances you might try to REST that means just that REST!!!! Kinda like "a snowball in hell" chance - right?
Boy, do I know what you mean about "wish I still liked to drink" - what is up with that - I think I still miss my scotch but not enough to pour a drink on occasion.
Hope you're resting today - sending hugs, S.
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Thank God for the Lasix!!!!! I'm glad you are getting rid of the excess fluid that has built up. You will feel SO much better!!! By just getting my pacemaker, I lost 7 pounds!! That's 7 POUNDS of fluid that my body wasn't able to pump out of it's own!! Take it EASY so that you CAN go on your trip! Don't compromise your trip just to weed!!! Maybe even take a sabbatical from work and use the trip as your milestone. Once you get back you can decide if you want to go back. But to me, the trip is worth way more than working or weeding...but that's just me!
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Oh. Man. I was holding my breath, waiting to see how your post would end. I agree, things ARE looking up! Your trip will be fabulous
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Glad they are getting things straightened out. I second barbe's motion, save your energy for your trip!!
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Today I worked the whole day and it went fine, other than the steps I have to climb to get to the office since it is on the 2nd floor. So I stayed in for lunch and we ordered pizza....I took one bite and said OMG, this is spicy, Really spicy. I just can't eat things that I used to eat because my mouth and lips or so sensitive. I washed my face after eating it and the corners of my mouth still got sore and were burning....some fruit does the same thing...tried eating a cheese coney the other day and the sauce which is not really all that spicy was too spicy for me. Everyone else thought the pizza was delicious. Did I tell you the PA told me the other day I have chronic chemo mouth and when I asked why now, she said because I have just reached that point. So I guess we are going to blame everything on the chemo now. Wonder if that is why I have a constant running nose....it's almost like when I was on avastin. I did OK with my breathing, but when I had the mask on would sometimes run out of breath when talking to my patients....supposed some women try to sound breathless, but I sure don't like the feeling. Then I would cough off and on and had a real coughing fit tonight and my neighbor brought me some cough syrup she had. I am craving Luden's wild cherry or Smith Brother's cherry cough drops.....remember I used to eat them like candy and am sure they don't have any medicinal effects, but they sure do taste good.
The cardiologist's office did not call me today and I had given them all three numbers, home, cell and work. So either they are out on Thurs or they just have not found a time to work me in yet. I will bug them tomorrow if I don't hear anything.
I was trying to think when this started....know it had to be after last Wed. because that was when I had my CAT scan and I could not have done the breathe in and hold if it had been going on them. I am thinking it all started after they had me double up on the coreg? Think that is possible? Anyway, the lasix are working and I am just so pleased with my little ankles....just have to pray it's also getting rid of the water around my lungs and heart.
It was a long day at work so I called Lee and told her we can get together some other time....I pretty much have things picked and booked, but wanted to see if there were places she liked better. We are trying to go cheap cuz face it, a bed is a bed. My H (note no D) says tonight I should always put my suitcase in the bathroom, not by the hotel desk in case of bedbugs and I told him I would be willing to bet we have a lot more bedbugs here than they do in Europe....I always found Switzerland and Germany to be extremely clean.
That's all I have to report. Thanks for your usual encouraging posts and good wishes.
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Marybe, your neighbor with the cough syrup reminds me of my upstairs neighbor in my first apartment after college. One evening when I'ld come down with a horrible cough there was a knock on the door. When I opened it there was a tiny, elderly women standing kind of half in, half out of the door frame and holding a steaming mug. She said she lived upstairs and had heard me so she brought me her "Mother's Famous Cough Remedy". Then she grinned and stepped aside so I could see her other hand and said "But I thought you might be like me not not like to drink alone, so I brought a dose for myself too." That was the most effective hot toddy I've ever had.
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Chabba, loved your hot toddy story! Marybe, good to hear you decided to rest tonight. Give that fluid time to dissipate and you'll be feeling so much better. One of my biggest problems is my BC is in my lung, including the lining and I get the fluid build up. I have a real problem climbing stairs and just slowly pull myself up. The meds will work wonders for you. So... Why no D in front of the H tonight? You made me laugh. Take care, Marybe, and all you lovely posters who care for her so much!!
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Marybe, my chemos were adriamycin and cytoxin first and then taxol. When my hair fell out my nose began running and someone peointed out that the hairs in our nose control normal nose drips. Mine must be back because my nose finally stopped dripping. I was dabbing my nose so often that I felt like a drug user. er I suppose I sort of was. :P
Ginger
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I remember things tasting spicy when I was on adriamycin too. I thought my mom had changed the way she made her spaghetti sauce. It was still good though so it must not have been that bad at that point. I do remember the mouth being sore was something they warned me about and I was obsessed with rinsing with salt water to try to prevent it.
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I have had a sensitive mouth and esophagus during all my chemo treatments. It's not horrible, as long as I avoid spicy food. I couldn't drink red wine straight up, but it was fine as Sangria. Even Xeloda caused a problem. Any Mexican food was pretty much off limits, although I could eat marinara without too much trouble. And my nose still springs random leaks, one year after finishing DD AC/T, even though the rest of my hair seems to have fully returned.
Marybe - I hope you are feeling better so you can continue to look forward to your trip!
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I had the same problems on chemo - kleenex was my best friend and anything with tomato sauce was "too hot" - shoot I started mainlining Kraft Dinner - it tasted just fine!
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Marybe, the tomato would have REALLY exacerbated your mouth sores!!! I can get cankers just from eating them...
As for the bed bugs, there are new breeds all around the world, that's a really good idea about the bathroom, or bathtub even better!!! It's not necessarily the Europeans that "have them", but the tourists who "brought them"....
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I saw a show about bedbugs are how bad they are lately and it showed you how to lift the headboard off the wall and lay it down on the bed to check the back of it for bedbugs. I do it every time now, before anything I own even goes into the room.
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I must be strange (no agreement is needed
) but what I really craved when doing AC was jalapeno peppers (on everything)!!! 0 -
Peppers! Wow, all I wanted was lemon yogurt, popsiscles, and such. Peppers! Double WOw!
Ginger
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And I still like really spicy food, which is even weirder......
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I had no mouth issues until maybe the last two weeks, am just super sensitive to anything acidic or spicy and I sucked on ice with each adriamycin treatment to prevent mouth sores. I think this started when I got the thrush, but now that I look back on it, maybe it was not thrush at all, but just a preview of what was starting in my mouth. Right now I have little sores in the corners of my mouth which is sometimes called angular chelosis and associated with the lack of Vit C, I think.....I forget cuz it's been a long time since we studied that Navy Atlas of Oral Pathology in school.....but that's not what caused mine...it was when I was eating the other day and it felt like not only my mouth, but lips were on fire. Petty gripe when I consider all the other crap that is going on.
They called me at work yesterday AM and had an opening with this registered nurse, nurse practitioner who is with my cardiologist's office and deals with heart failure so I went there at 3:00. I honestly think she forgot me cuz I was in this room for an hour and 15 mins after someone had taken all my vitals and my medical history. The person who did that stuck her head in the door and asked She hasn't been in here yet and I said No and she acted shocked. It was ok. I had propped my feet up on a chair and was napping when I wasn't reading. About 15 mins later, the woman I was supposed to see came in and she started out with I am very sorry so I don't know what happened. She went over everything, listened to me breathe , said she didn't like my cough, felt my legs and ankles and then went into this explanation of how the heart pumps, how mine is not getting rid of blood the way it should and is enlarging and hormones are coming from everywhere to help it work ( I tired to tell her I have no hormones left) and I don't know what all she said, but she said the heart is like a baseball and can get to be as big as a basketball which alarmed I asked, Does it stay that big?, but she didn't tell me. Then she was saying how lasix although they work are not the best solution so she told me she was putting me on another drug which is potassium sparing so I won't need to take the extra potassium because you actually can have such a thing as too much potassium. This I question since mine is low, but what do I know. All I do know is that walking any distance wears me out and I huff and puff and this cough sounds like the croup. I asked if allergies could be contributing and she just shook her head no. So she wants me to see another cardiologist in the group, one of the doctors who deals strictly with heart failure, saying not that my cardiologist isn't a good one, but these other ones deal with my problem daily. Actually, I wonder if mine is so good....I mean sure, I was happy to stay on the Adriamycin, but I think we should have quit when it was between 45 -50.....know what they say about hind sight. So I have to get a chest xray and two blood tests....can have the blood work drawn at the onco's and she gave me the Rxs. One I get done on Mon when I have my appt just to get my INR checked and discuss what is going on, the other she told me to have done on Thurs and also I am to call her on Mon or Tues to tell her if my chest has cleared up and how much weight I have lost...I told her not to hold her breath, but she is thinking I am going to lose water. I was going to get a chest xray right down the hall, but the place was closed even though it said open til 5 and it was only 4:40....so I walked all the way back up the hall and just walked right back into the interior office and went to the woman who had scheduled me and given me direction to xray and said they are closed. She says well, I don't think you want to go all the way to the main hospital which was true although the sad thing is two weeks ago walking over there would have been nothing. So I found out where I can get these and one place is where I go for my CAT scans and not far from my house and I will do that this morning. The reason I am up now is because I went to bed really early.
I stopped by the pharmacy to pick up my RX which she sent in electronically and it wasn't there? I told the guy I had her pager # in my car, but I honestly could not walk out there and back could he get me one of those carts? and he said sure, a large one or the small? and I said No, I want one of those deals you sit in and drive. Jeeze, never did I think I would be riding around Kroger in one of those things....it wan't hard to steer, but people kept walking in front of me and I was in a foul mood and muttering things under my breath at them....people are pretty rude, you know.....but then again, I guess I don't look like I need one of those carts. I took it all the way out to my car, got the card with her number on it, they called and got no response so then I finally called after sitting there for about 30 mins and left her a message saying I was going home. By the time i got home, Kroger had called to say they had the RX. So back I went. This time i just got a shopping cart so I could lean on it and that made the walking much easier. By then the Imaging Center by me had closed so that is why I am going this morning for the xray. Long day and I really know nothing other than the fact I am not in very good shape and am thinking How in the heck did this happen so fast? Is it the EF, effects of chemo or the meds?
Anyway, that was my visit to the heart office yesterday. I am not sure if the reson she is having me see someone else is the fact she said she was going out of town or the fact she's not really a doctor. Oh, I forgot at one point she said something about a stint....but I think she said whether or not that works depends on what caused the damage which she said in my case they are assuming was the chemo, but they have to rule out blockages, blah, blah. I guess I should have taken someone with me since I forget stuff they tell me.
I forgot to ask her about Europe, but know myself if I am still feeling like this in Oct., for sure I am not going. I am going to start being off on Wed. and it also looks like I am going to be taking off here and there for doctor's appts.....she wanted me to see this doctor in a week, but no such luck, lst opening was on a THurs. so that means another day off, but i figured I better take it.
Today I am hoping to go to the movies with my neighbor....one thing for sure, no popcorn....that would do a real number on the corners of my mouth. Oh hey, good news....I think after two years, I am finally no longer constipated thanks to the chemo break. There is always a little bit of silver lining somewhere.
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Yay for no constipation!!!!!!!
Go Marybe lol
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What a frustrating day. Seems to happen all the time. No one can just be efficient. When I wait for too long after already seeing the nurse I open the door and sometimes wander around the hall just to draw attention and be an irritant. Doesn't make the dr come any faster but makes me happy. He has a lot of patients many worse off than me and I appreciate he spends as much time as needed and doesn't rush when I have questions. I really hope things improve. Where I work we have cardiology subspecialties, CHF, EP, interventional, congenital, etc so it will be a good thing to see someone who commonly deals with your problem.
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Goog Grief! What a crappy, frustrating day! Hope the movie is good. Maybe have some cold, slushy drink for your mouth.
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How frustrating. I hope the movie helps you to forget it.
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Yep, shit day for sure!!! Glad they are directing you to smarter and smarter docs that deal ONLY with your issues. When you finally get in front of him, he'll go "Oh, you just need this......!" and TaDa you will be FINE!!!!! Not all docs can be like Dr. House!!!!
Don't cancel those tickets yet.....
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Marybe - I know you had a horrible time but like Barbe says "don't cancel those tickets yet" I think you are on your way to getting the help you need - don't "overthink" everything for now just let the cardios sort themselves out - I know they don't prescribe Lasix for long term like they used to - they have better drugs so for now just "go with the flow" and PULEEZE rest (I know you NEVER rest).
Big Hug, S.
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I ditto the above ... Crap day, beginning with being forgotten at the doctor's office! So glad you will see a cardiologist who deals with your kind of problems and hope everything she told you to do helps your situation. There's still recovery time before your trip .... And no chemo should help. Hang in there, Marybe!!
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Woohoo Marybe! Guess what? The cookies have just arrived! Ooo yeah! Of course I had to open the package straight away and check them out (and taste.....of course ) to see how many pieces they arrived in. Surprise, surprise! Most of the cookies are still intact (but not for long). Can't wait till supper time coz I'm having Marybe cookies with my coffee!! Yippeeee! Thank you so much!!
Hope you are feeling a bit better. I'm always wondering how you are doing. Don't forget to REST!
Love n hugs. Chrissy0
