Between the Devil ( the red one) and the deep blue sea
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matybe: i looked that link up, too... whadya think?? 3jays0
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Marybe, I am so glad you had a great party!! I know that was important to you. Hope all the holidays are happy for you. You bet I am praying for you and sending positive vibes every day. i think you are the most courageous woman I know. The red devil is a proven cancer killer for sure and we are all hoping it will start to turn the tide for you. Maybe having it low dose will mean less side effects? But just so it works, that is what I am praying for. Bless you. We are all here pulling for you.
love,
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Hi Marybe,
I am glad you are feeling good. I too didn't have serious nausea on Adryamycin (sp) and Cytoxin, I ate candied ginger and drank Gingerbrew, it's non alcoholic. I hope you do well on this too.
I was looking for you too after your party. I am glad you have a plan and pray it will be a good answer for you.
Hugs Gingerbrew
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Found you and put it in my favourites.
We are at present away from home so have limited time on the computer.
Big big hugs
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You are alll too sweet and I am afraid you are going to find out all too soon that I am just like everyone else and one of these days I am going to be crying because I am no longer able to do my normal stuff which has always been so important to me. I am going to be hopping (well not exactly hopping) into the shower soon since today we start at 8, but at least Fridays are short days. I have an appt with the eye doc this afternoon,but guess I won't need to be doing those much longer because if the adriamycin makes my lashes fall out I won't have to have them plucked any more (thank you abraxane). So far the only real SE I feel and I don't even know if it's the chemo or all those pre-meds they gave me.....I feel tired, very tired and my head feels sort of stopped up like I have a head cold. I have only taken the oral zofran twice not because of nausea, but to prevent it, but I really don't think I am going to get any since I have never had that problem in my life. (yeh, I know there is always a lst time) I took some senacot yesterday, but think I am constipated anyway and they tell me that is not a normal SE with this one, but since when have I had the normal SEs? This is low dose weekly I am getting as opposed to every two or three weeks so maybe I won't get bad SEs. All I know is that when I heard there were too many tumors to count, it scared the crap out of me. My onco says they were there they just don't see as much in a CAT as a MRI and that got me to thinking and I looked, it said there was a conglomerate mass in my liver in the MRI and that means a whole group bunched together, doesn't it? so perhaps I just didn't realize what they were saying and was still thinking there were just four of them.
I did read that link about MDA.. (Thanks Karen...also read about something Alpal told me about) ..the onco I talk with at MDA said he would be away through Sat so I am assuming he is at the symposium in San Antonio now.....I am surprised he did not mention it, but maybe he did not feel it would work for me. I am going to be sure to ask about this when I get my 2nd treatment on Tues....they moved my appt from Wed. to Tues yesterday which pissed me off and I told the girl, I am trying to work here, ya know. But then I started thinking if I get tired again the way I did last week, I would not be fit to work in the afternoon as I used to do after treatments. I was lucky I made the drive home and only did it myself because DH was not answering his cell. This time, I will have a driver lined up.
One thing good about me doing this now....a friend from my hometown who was not a close friend, but is about to become closer was here in the hospital until yesterday and she started adriamycin one day before me.....She gets avastin with it and because of the stink about Avastin she has to get it in the hospital so she will be here for days at a time and I invited her to stay with me....he husband also if he wants to. Wed. AM I visited her in the hospital and she is doing much better than she was. I have that upstairs apartment that is just there empty unless my Dad wants to use it when he is here or I have guests....have not rented it out since May so after I heard about her and was in bed thinking one night a light bulb went off and I made the offer and she took me up on it. So I am going to have an in residence chemo buddy and we can compare notes since we started the red devil at just about the same time....but she is getting it in a larger dose less often, So instead of having a party on the 17th, she will be moving in on the 16th and we will have our own little party....a Pity Party....nah, that's not my style and I hope to bring her up out of the dumps also. Her name is Ellen and originally her cancer was of the omentum ( not sure how you spell that, but it's the lining that goes over our organs). She did chemo and they thought she was fine until she started having extreme pain....they took out her gall bladder, and that was not the problem. Then he back was killing her to the point where she was crying....finally a MRI showed mets to her spine and further investigation showed it was endometrial mets....they did rads on her spine, got the pain under control and she is now doing chemo. So now we are chemo buddies. Life has a strange way of working, doesn't it.
Thank you everyone, you are my friends and I am so happy you are all here and cheering me on. I will keep you posted and hope to catch up on some of the other threads this weekend.
I don't hear any fat ladies singing and that is a good thing. Love, Marybe
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Oh, Marybe! How great of you to offer the apartment to Ellen. And now you have a chemo buddy. I am sending you warm hugs and please know you are in my prayers.
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Marybe:
Nice to see your latest post - sounds like Ellen is just the ticket - you'll have someone to share info with and perhaps a cup of tea on occasion - isn't she lucky to have found you?
Keep on keeping on and we'll be here to "get your back".
Sandy
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I believe that everyone comes into our lives for a purpose, and you and Ellen were supposed to meet for your mutual support and needs at this time... ! You are both blessed~! Know about feeling that you can't do what you used to do. It's hard to adjust to that hard fact. I'm learning to 'let go and Let God" for a lot of it. Tell Ellen Hello from all of us.... she may not have B/C, but she's a figher warrior just as well, and one of us!
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Hello again Marybe.... So glad to see you posting, and keeping all of us up to date! It's like you and your treatments are something for us to all keep in mind!
Not to knock any of the alternative or chemo-bashing threads, but your attitude and treatments are just amazing to me. I'm sure seeing you going through all of this, has got to help these women with their questions, and their fear of going ahead with conventional treatments. Hopefully they will find as much help as you have..... with your team!
You are always in my prayers and thoughts.... Just keep on cooking kiddo! And Merry Christmas!
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Marybe, maybe this would be a good time to cut-back at work?? A sabbatical maybe?? Have the holidays off, be with Ellen and begin to make retirement plans??? I think that is so cool about Ellen, what a coup to get her right into your home!!! Have you contacted the ACA to get volunteers to drive you in for treatment? My Dad did that for about 10 years. He never had a problem waiting and he said it gave HIM a lot to do it! He volunteered for a reason, to give back. You should give someone else that chance....just a thought. Rather than trying to "rely" on the not-so-DH!
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Hugs to you and throwing large doses of support your way.
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Marybe, I follow you on the 'Pets are good therapy' thread. May I share a little about my DH's step-grammy? She was first diagnosed with BC when she was in her sixties. Over the years, it spread to her lungs and then to her jaw. But she kept going in her own quiet, gentle way. She had always been a vegetarian, so that didn't change. But she started walking more often (daily, I believe) as well as took up Qigong (Tai-chi) which she did daily. Qigong focusses on the life-force / energy / Chi which is in all of us, to strengthen it and get it to flow properly. It also helps the physical body to balance itself and function properly. As time went on, she attributed her added years mainly to the qigong. Just over a year ago, she passed away at 91. She had been free of cancer-symptoms for many years.
I plan to add qigong to my regular routine. I have tried all the hormonal therapies and they all quickly failed me (within a couple of months). Same with several chemos - at best they only worked for a couple of cycles. Chemo has its place, particularly for those of us with advanced cancer, but we can become resistant to them pretty fast, or they may not even work at all from the start. So I'm always actively looking at alternative / complementary options. Some of them seem to help, although I'm not exactly sure which ones.
My cancer has broken through the skin, and it covers my whole right breast down to my upper abdomen and almost to my armpit. It weeps stinky fluids and blood and has eaten away my skin, so that area is completely raw and exposed. I am in constant pain, and this becomes excruciating when I wash myself or have to change the dressing, which is daily. For many months, caulifower-like lumps covered my breast, some as big as oranges.
Anyway, I have just completed 2 cycles of Paclitaxel, and 3 cyles of CMF prior to that, and this has helped to melt away practically all the lumps. The area is still skinless and oozing fluids, but it's much better. The tumor has shrunk visibly.
So I think the chemo and alternative therapies are working well together. Qigong for me next. It's a very good form of exercise and tried and tested for centuries. Gotta work on strengthening my Chi. Conventional medical treatment can only do so much.
(((HUGS))) chillipadi
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Marybe, I will keep you in my prayers and follow you on this link. Love and hugs. Darla
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Marybe.......in our Life plan are so many ups and downs and so often we learn from each other. For all the people who have never met you then......you are the best example of not only living, but living well, with a relentless disease. You have challenged it forcefully every time it has challenged you. Of course, that gives everyone else the magic elixir.....hope.
Adriamycin is very strong and all the prayers along with it should make it even more so. You will be in all my thoughts and prayers for the best outcome possible.
It is wonderful you have a "friend" to share with at this point. Everything happens for a reason, everything -- so it was meant to be and you will both be such a source of comfort to each other.
You are a tough and formidable lady. Wishing you very, very well.
Hugs, Jackie
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Marybe so glad to hear you are feeling good. Praying your treatment works and sends those tumors packing! Glad to hear about Ellen, so nice to have each other for moral support!
(((hugs)))
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hey girl, just checking in on you. haven't even gone to bed yet!(and its after 10:30 am.. gonna catch some zz's. i think its great about ellen, too.. i know having the company will help you!!love ya. .....3jays0
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Marybe.... Glad you are doing AC, as one of the heavy hitters. I wanted to tell you that I didn't have all that much nausea either. I got odd food tastes, wanting very salty items. So ham instead of pork chops for example. No cabbage family foods so peas instead of kale. Otherwise, I ate normally.
I also didn't lose my eyebrows or lashes (did on Taxol though). I ate a lot of pears.
I didn't need to be reminded to drink water, as was really thirsty. That was not a problem except that I drowned a cell phone with a bad water bottle. I got one with a tight screw cap.
So sorry you needed to go down this road, but I found it less dreadful than I had imagined.
Praying this one beats back all the nasties. Thinking of you. - Claire
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Thank you all for the well wishes and prayers. My onco's office just called to see how I am doing...they tried yesterday, but I was not here...worked the AM, then visited a friend who is temporarily in a nursing home and then had an eye appt. I thought maybe that would be the end of plucking out the ingrowing lashes, but maybe I will keep them as you did, Claire.....I hope so as losing the lashes and brows always gives you that alien look, not sure what planet. I have not had any taste change yet, but do wake up with a dry mouth and can honestly say right now I do not have any desire to eat at all (that would be a big change for me if this keeps up as I love to eat). The main thing I am noticing is that I feel stopped up, like I have a sinus infection or bad cold....head is clogged, sort of foggy feeling and I just gave myself a blast of flonase and took an alavert. I told the nurse to ask if this is a SE. She said he wrote as needed on the zofran so I don't need to take that unless I have nausea, which I do not.
I talked to Ellen last night and she is not sure what drugs she is getting....she said three of them and can only remember adriamycin and avastin....she apologized for not remembering and I told her the best it yet to come and that I can't remember where I am going some days. She said she doesn't get her treatments again until Dec.26, but wants to Tim and I to get together with her and her husband sometime before then and she keeps talking about paying me, but honestly the place is just sitting there empty and we are heating it anyway so there is no reason for her to pay. I told her we can all go out to eat or something. What I tried to impress on her is that she is helping me out as much as I am helping her.....it's sort of like when I was doing Xeloda and was sharing SEs (in my case lack of them) with the other gals on Xeloda. She said the pharmacy in our hometown did not have the meds that were prescribed so they were substituting something else and that had her upset yesterday....she is really much better off to be getting her treatments here in my opinion...there are more resources in a larger town.
I think I am going back to bed.....my head if just really stopped up and I almost feel like my teeth and cheeks are starting to feel it the way they do when I get a sinus infection.
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Marybe, I was just reading my copy of Chemo for Dummies, and wanted to know if you are getting only Adriamycin, or if it is AC (with Cytoxin?) I agree with your other friends that the time is right to try this heavy-hitting chemo and wipe out those liver tumors. They have got to go. Overall, you have responded well to drug therapies, and most have worked, with just a few slackers in the last couple you have tried. I just hope the S/E's are not too tough with this one. You look cute in a scarf, so I'm not that worried about temporary hair loss, and you seem to have an iron stomach, but I don't want you to get neuropathy or the more miserable ones.
Nice that you found a chemo buddy, and will have each others backs thru' the treatments. Depending when Ellen gets her treatments, maybe she could drive you to and from? I hope she is not the competitive type...you have set the bar pretty high.. She would have to work a 40 hour week and put up a 12 ft. Xmas tree, and have three holiday parties to pass you up. You DO hold the Guiness record for CA27.29 already, so you don't have to go any higher with that. Quit being such an overachiever! And no arm wrestling with Ellen! But if you do, let her win once in a while.
Keeping you in my thoughts and heart, through the holidays and straight into a healthier new year, Thank you for creating this thread for my conveniece. That is why you did it, isn't it? Got it in my favorites now...Keeping an eye on you.
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Elimar, the tree is only 10 ft high....if I said 12, I meant 10. And so far as parties go, I think that one at my Dad's was my one and only for this year unless I suddenly get a burst of energy. I am not even going to try working after my treatment on Tues.....since I was sort of wandering around the office when I was checking out saying I am just soooo sleepy, why am I so sleepy, can you imagine cleaning teeth? Since you have dental nightmares anyway, you probably could. I am just getting straight adriamycin.....low dose weekly. Now I am going to bed....the party tonight is at a dinner theater and all I have to do for it is show up.....which could be an effort.
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Marybe: You are a true inspiration to all of us here on BCO. I admire you for your strength and willingness to take on these tough treatments. I think part of the battle is believing that you will persevere. Good that you have a chemo buddy. Prayers and healing energy for you!
chillipadi: Go for the Qigong! My friend has Mysthenia Gravis and she put it into complete remission by doing vegan diet, Qigong and Tai Chi. It was a miracle, because she was close to death several times.
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Red Devil messing up your appetite? Three words: Angel Food Cake!
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Marybe, glad to hear you are doing well. I hope the "A" works for you! Your strengtgh is a testiment to all of us on this journey. Praying God continues to give you stength. Sendin love & prayers. NJ
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Okay, NOW I know what the "Red Devil" is.....Dang, Marybe! I am learning so much on your thread, about all the types of chemo, and how to make it through them.
Jackie told me she had the same thing, and about the "red" thick looking liquid! I had never heard of this before. Hope this works for you..... You need to stay around us, and keep us in shape...
It's a wonder the Docs aren't using you for training purposes! Or are they? Your experiences with these drugs, are best only understood by them.....
Always wishing you the best....with lots of hugs! (((((marybe))))) xoxoxoxoxo
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Catch you by the Deep Blue Sea!
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Marybe, I am taking a number of meds that make me have a dry mouth. I have to chew gum constantly. I find that the new Extra Professional gum is the best gum ever!! It holds it's chew-ability for hours and has a great flavour. The bubble gum is good but short lasting. There are 3 other flavours and I rotate them all through the day. If I don't chew gum I can't even open my mouth to take a drink of fluid. Are you that dry with the chemo???? Also, the Professional gum is supposed to clean your teeth as well, so I thought of you when I started using it! NIce to know what links our memories, eh?
Hope you have a good nap (I did!) and a nice evening. You have more energy than me and I'm not even on chemo!!
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Marybe...how are you today?? I am thinking of you.....
You are getting lots of good advice from some of us, and a lovely pic from Chevy. I hope you get well rested for Tuesdays treatment, and that you can go with the flow and rest when your body says rest. The way you dash around doing goodness knows what doesn't make you an easy person to just sit down and do nothing....but that is just what you need now as the new treatment starts to bite. Rest, rest and more rest....in great big dollops.
We will all be with you as you go thru' this....thinking of you all the time.
Isabella XX
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Isabella is right, Marybe....I think you do more than any 10 of us put together! Maybe just take more time for yourself....do something you really like.... Like decorating 10 trees, the house, and cooking for an army! 0
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marybe: just a thought: are you allergic to equal, as many of us are:.. zofran has it in it, so doesn't the gum Barbe suggested.. i'd try to ask them for another anti nauseua.. it can explain everything to the light headedness youre having, to headaches, and tiredness. it also is cumlative, and in enough dosages, leads to stroke!!!there are so many anti nauseaus, take another one... please... and you be careful with the gum, too Barbe.. anything that say phenynolkinetics, stay away from. they build up in the brain!!!... just sayin....3jays0
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Hi Marybe!!
Thinking of you.......
♥
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