I am terrified of chemotherapy
Comments
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Bon - Just toasted Bette & may her energy fill you with comfort.
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Bon.....thank you for the introduction to your friend Bette. I thank her for her influence on you and your sense of strength you got from her. I thank both of you for all who read your post as it is an inspiration to them to find the inner strength needed to walk the BC road.
I salute both of you.
chrissyb
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Lilylou and Chrissyb...Bette smiled back at both of you. You would have loved her big, toothy grin. I'm sure that you understand my need to tell people about her and what her death meant for me. I keep reading stories about 'chemo angles' who inspired women newly diagnosed with breast cancer to go in for treatment. Bette was my 'chemo angle', even without having a cancer story of her own. Just a human story.
And there's another part of the equation...a story of friendship. When she was first showing symptoms and going through the early testing, she and I were estranged. Her behavior had become erratic and I called her on it, never dreaming that there were killer cells chewing at her brain and exaggerating strange behaviors. A mutual friend emailed me and told me she wasn't well but no one knew what was wrong. I called immediately. I spent time with her almost daily for the remaining three months, through the incredible changes that occurred both mentally and physically, through the eventual diagnosis, through her last day with Hospice. In the beginning I tried to give her some normalcy so I'd pick her up and take her for a glass of wine at sunset on the river or over to the pool so she could get her feet wet and enjoy some sunshine. I even carried a wheelchair in the back of my car when her motor skills gave out. But when her physical condition deteriorated so that she was bedridden, I went to feed her dinner almost every night and give her fiance a break. We were friends until the end.
And that's my message...please don't let your friendships go, ever. If you can salvage a friendship, do. I regret that gap of a couple of months when she was offended and I was angry. It wouldn't have changed the outcome, but I feel robbed of the time with 'my pal', when we could have been creating more wondeerful memories: During the weeks immediately following two hurricanes that caused severe damage here in 2004, when we had curfews and bans on alcohol sales, Bette and I would drive 45 minutes north to the neighboring county to read a newspaper, have lunch in a real restaurant and stock up on wine. On the drive back down US1 along the river we'd put in her Everly Brothers CD and sing along at the top of our lungs. That CD was my 'inheritance' from Bette. I treasure it and can never hear an Everly Brothers song without looking upward and giving Bette a wave and a smile. So...go call your friends and mend fences if need be. You will never regret being the one to make the first call, to give in, to give up. No grudge or petty argument is worth losing a friendship for a week, for a month or for a lifetime.
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I'm wondering when the nastier effects of the chemo are totally gone...when do the side effects go away and you can figure out what you're left to deal with? I'm 13 days from the 4th Taxotare and Cytoxan tx and I still feel crummy. The last two tx were more debilitating in the long term. I hadn't recovered from #3 when I had to go in for #4. That funky mouth taste is still with me, as are the nose bleeds and the terrible GERD. I'm dizzy and extremely tired, finding it difficult to be active for more than a couple of hours at a stretch. I expect that the GERD will now always be a problem...it feels like the chemo just ate away at my esophagus.
I have weathered this part of the cancer diagnosis...chemo is still not something I truly embraced, just another thing I HAD to do. That's what a cancer dx brings...duties without pleasure. Musts vs wants. Next is radiation. Another terror. When I read about the side effects of radiation I was just as terrified as I had been with chemo...only I think I'm more concerned about the long term damages of radiation. My original anxiety over chemo was probably more immediate in nature.
None of this cancer stuff is easy to deal with. I am a walking zombie some days, just following orders without any idea if what I'm doing is right or wrong. It's just what's expected. Others followed the route and I should, too. Since this Spring I've felt like one of those lemmings, about to go over the cliff.
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Bon, I wanted to write earlier but this last chemo (last Tues.) was absolutely debilitating. I'm still wondering how I'll show up at work tomorrow.
I wanted to say how happy I am that your mom is out of the hospital and how touched I was from your account of your dear friend Bette.
My onc says that for every month you're in treatment, including radiation, that's how many additional months it'll take to fully recuperate and totally feel yourself again. My husband keeps saying that this year out of my life will ensure that I live a much longer life. The grade 3 for both us is what makes the docs feel that chemo is a necessity. I do believe in my own case at least that it's saving my life. However, if I were stage 1 and had no cancerous nodes, well, I recognize that's a gray zone. Certainly many people will have gotten chemo who would never have a recurrence, but one will never know, and you don't want to find out the other way that, yes, it would've come back.
Something my mother said to me many years ago when I went through a divorce holds truth for today. She said in her simple wisdom, "When you're lying flat on your back, be happy because there's only one way to go from there and that's up."
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Eileen101...Thanks for writing and God Bless the wisdom of your Mom. She's right... it's such a good visual to remember when I think of that phrase about there being no where to go but up.
Sorry the chemo is kicking your butt, too. I have been working on and off but this last month, between how rotten I feel and my Mom's issues, well, I haven't worked much at all. It's amazing to me when I meet people who say they worked through the entire chemo and radiation. I guess they were in much better shape than I was before it all began.
I've gained an incredible amount of weight though all this. They had me on such heavy doses of steroids that I'm moon faced now. As the radiation begins, I'm needing to follow a strict weight loss diet. Nothing fits and I hate seeing myself fat more than seeing myself bald. So I'm hoping that what I start to gain in hair, I'll lose in pounds.
Nice to hear from you, Eileen. Hope all goes well for you.
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Eileen,
I'm sorry you are having a rough time. I too had a rough time, and I couldn't work at all. Please be good to yourself and listen to your body. If you need to take the day or more, can you? We all react differently, so just know it will get better. Hang in there.
Bon,
I have been thinking about you and wondering where you are in the process. I hear you on the moon face, and weight gain. I am still very lucky to have people and patients at work point this out to me. Sarcasm abounds! It is such a kick to the gut on top of everything else. I did manage to drop around 16 pounds so far, 10 during radiation. And I really didn't change too much as far as eating, it was some of the chemo weight. 15 more to go. Not sure if that helps, but be as kind to yourself as you can be. This is a known side effect of chemo, and it's not like you have let yourself go, or anything else society places on weight gain. Take care!
traci
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Bon - Effects from the last Tx gradually disappeared for me ..every day was just a little better than the previous and seemed like it was taking a long time. I had bmx 3 weeks after finishing so am sure that set me back too. Then I had problems (& still do) with chest edema but surgery and chest edema effects were pretty much obviously separate from all the SE from the chemo. What I remember most is that each day my energy level lasted a little longer before I crashed. I tried to go with what my body was telling me as I didn't want to cause any more delay in recovery than need be. Still find that sometimes, for no obvious reason, I am tired and this is at 23 wks past last chemo. Like you, have my own business so am fortunate that I can kind of control my schedule to some extent and this has been helpful. On the Herceptin days, I just give in to taking a long afternoon nap ...much too groggy to do much else so now kind of look forward to that quiet afternoon nap. Since you are HER2+ as I am, you'll be doing Herceptin too? Did you already have surgery or is that after rads?
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- Lilylou...yes, being HER2+, I'll be on Herceptin until the end of June 2011. I had my surgery back in May...partial MX on right, no node involvement, no reconstruction. First appointment with radiation oncologist is tomorrow. Eventually I'll have a hysterectomy to get rid of the uterine/ovarian cancer risk. And at some point I have to get the GI stuff under control. That's the major SE that seems to keep on 'giving'. It's very disrubtive and the GERD is just so painful.My energy levels are at an all time low. Last evening it took all the strength I could muster to just empty the dishwasher. Honestly, right now I'm glad to be bald since it cuts down on the amt of energy required to get dressed and ready to go out the door. I'm just wiped out. It worries me because people at the chemo tx center who are there for Herceptin only and have finished rads continually tell me that the rads seemed to make the fatigue worse and sent them to bed for most of the 5 or 6 or 7 weeks of their tx. I can't afford to do that. Yes, I am self employed...but need to stay employed. I admire all of you who've had to endure the surgery for 'foobs' as they call them. I honestly don't think I could do that. Of course, I guess you do what you have to do when the time comes...I just feel blessed to have skipped that.
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Bon - congratulations on finishing chemo. Please do not worry about radiation. Just like every other part of this journey, it affects all of us differently. I felt better about 2 weeks out of chemo, and breezed through rads without any discernable fatigue AT ALL. I wonder if part of that was due to my exuberance about being done with chemo! Who knows. Anyway, I was concerned about side effects from radiation, but the rad oncologist was very patient, answered all my questions and reassured me a lot. The actual daily trip to the facility quickly became part of my routine - was quick and painless, the techs became friends, and it was no big deal - although of course I was THRILLED when I got to ring the bell the day of my final treatment. I went right back to work after each treatment and it was no problem. Spent NO time in bed AT ALL during the day. Doing Herceptin is totally different than chemo. It took me the first few treatments to realize that it wasn't going to hurt me afterwards but it finally sunk in. I declined the benadryl, so I could drive myself to/from (loved that!) and just went in, did my 90 min, and went on about my day.
I will say this though - after chemo was done, I kept saying how much better I felt. Then after rads was done, I kept saying how much better I felt THEN. Then after herceptin was done, I kept saying I REALLY feel better now. Now that I am in my 5th month out of Herceptin, I REALLY feel fantastic. But my point is, - it is all relative. You get your strength and health and energy back slowly, in stages. You just have to be patient with yourself and your body and allow yourself the time to heal.
This summer is SO much better than last summer, when I was in the middle of all this. And for you, you will be saying that NEXT summer when you are all done. It is hard to believe, but it really does go fast.
Stay strong. Be brave. You are through the worst of it. For real!
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Hi Bon....
First of all, I am so sorry about your friend Bette. But also want you to know that I am beyond proud of you!!! YOU GOT THERE!!!
To answer your question, Amy is right. You recover in stages. I found it took about 4 weeks to complete the last chemo cycle. Week 4 was when I had the port out, started radiation, and started anastrazole. Being ER-, you won't be needing that one. But was quite the week.
A couple of weeks later, I was feeling much more energetic, and then I got slammed by radiation. By slammed, I mean I was dragging, but was also pushing myself to do reasonably difficult cycling events. About that time, my hair was starting to reappear so was thrilled to have a lot of my "look" back.
Suddenly, about three weeks after final radiation, I got my groove back. Yes, I still had rebuilding to do, but had my energy again. It was rapidly uphill from there.
I had enough energy to do the 200 mile Seattle-to-Portland Bicycle Classic over two days just before the Week 6 following radiation, and about 15 weeks past final chemo. I could feel myself getting stronger during Day 2.
I continued to regain strength during July. Then, suddenly about 4 weeks ago, I realized I had hit a milestone. It was over. I was back to my life. Then I did a trip and realized that I really do have my groove on.
I am dragging today, but this is due to two nights on a hard air mattress in a tent (camping/cycling adventure with friends), getting soaked to the skin yesterday cycling in the pouring rain, and then a long drive home in the rain. On top of this, I learned today that a cousin died Saturday of a cerebral hemmorrhage.
I also got buried with with work today. This is wonderful news as I also work solo and was having a financial meltdown (worried about finances, not seriously in trouble) about a month ago.
I am back to training for another cycling event in two weeks and greatly looking forward to x-country skiing this winter. I had better keep the "psyched that we are going to have tons of snow" opinion to myself.
It will be a bit different for you, I am sure. My oncologist said "four months" and he was right. Fortunately, you hit milestones along the way, which I am sure will happen to you.
So thrilled that you made it. You should be major proud of yourself. I certainly was. - Claire
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Amy and Claire...Thanks so much for your insight into rads and for the encouragement. Every step for me is filled with anxiety. I learn from each of you as this journey through cancer continues. I'm thrilled that the chemo is over and that I can move onto the next phase, but radiation doesn't seem innocuous and most of the women I talk with aren't very positive about the experience. It's nice to hear from you two that it wasn't such an ordeal and that maybe I CAN keep working and get back into the swing of things during the 5 or so weeks I'll be treated.
Amy, it's also nice to hear that the Herceptin is a breeze compared to the chemo and that you feel energetic again. You're right...I do look forward to NEXT summer and having a life that doesn't revolve around cancer. I do resent that...I hate the idea that it has taken the driver's seat and I have to follow. Next summer I get to kick this cancer stuff to the curb and take my life back. Thanks for the reminder that it will be over soon.
And Claire...well, you are just amazing, having energy to train again and do all that cycling...and you have your life back. I want mine back too, but for now I just hope that soon I'll feel strong enough to go walking on the beach in the mornings or around the block at night. I'm sorry for your loss of your cousin...my only blood cousin died August 4th after a 10+ year battle with systemic lupus. For me, it was a true reminder of my own mortality. Life is short...no matter how many years you get. Glad you are back in your groove and enjoying your life again.
My appointment with the radiation oncologist is in just 6 hours. I need to get all the info and create a schedule of 'events' to fit in the daily rads tx and the Herceptin every three weeks...plus doctor appointment for my Mom and getting some work done, too. My clients have been patient so far, but there is just so far I can push this before they go elsewhere.
I'll keep you posted, and again, thanks for the info and the encouraging words. Bon
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Bon.....
You will be feeling a lot more energetic soon. I was so over the chemo experience, but then I got three more months of it. It helped to visualize myself at the end no worse off than being missing a couple of chunks of flesh and having much shorter, chic hair. This has come true.
My radiation tip I will share. For me, the biggest problem was holding absolutely still. So I took myself to that wonderful calm you get after terrific sex. It worked!!!! Plus gave me the endorphin release.
The staff laughed when I told them. And yes I had a major smile on my face.
Even though I was dragging at the end of radiation, I was feeling tons better than when doing chemo.
Note that I didn't get any major skin issues.....just some redness and peeling. I used the aloe gel as they said to, and augmented with Bag Balm (a product for dairy cows, which worked just fine on my "own personal udder"). My radiation team was prepared to put all sorts of ointments on me so I could do the cycling events, but I never needed them.
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A good way to make it through chemo therapy is to keep your immune system strong my sister went through stage five cancer chemotherapy and radiatian and she is still alive and well because her immune system was strong.
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Triphysique...since I started this board I feel compelled to write to tell you that I am glad your sister is still alive and hopefully doing well, but there is no Stage 5 cancer per se. The cancer stages are 0-4, 4 meaning there was cancer found in areas of the body other than where the primary tumor site was.
Yes, keeping your immune system strong is vital. Unfortunately the chemotherapy kills good cells and bad, so you get a weakened immune system due to the treatment. That's one of the reasons chemotherapy is so frightening.
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Met and talked with the Radiation Oncologist last week and today went for the simulation. It involved a CAT scanner, a molding-type pillow, blue magic marker, flashing light beams and small freckle tattoos. Not at all intimidating and the staff at the facility made it all very easy. My first rads tx will be next Tuesday. I'm told to expect fatigue and burns, on the order of severe sunburn, to my breast. I'll be getting 33 tx over 6.5 weeks. Looks like I'll have to fit in two Herceptin tx during that time,too. I'm told that each rads tx won't take more than about 15 minutes and I've elected to go to the satellite facility that's only 35 to 45 minutes away vs. the main radiation oncology center that's between 60 and 90 minutes away in angina producing traffic. Hoping this is lots easier than the chemo was.
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I hope it's much easier than chemo was Bon - keep us posted!
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First radiation tx today. Not a big deal at all...face up on an open grid table with machine zapping first from the right and then from the left. The prep part took longer than the tx. I'm told that the rest of the appointments will be brief...like only 15 minutes. Purchased lots of aloe in anticipation of the promised burns. Hope they won't be too bad and that all this just flies by. I've got 1 down and 32 to go! I think that puts me being done sometime in early November.
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woo hoo Bon... movin' right along! My fingers are crossed for no burns.
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I am absolutely positive that today is the day most all of the chemo has left my system. I say that because this is the first day since June 23rd that I've had any post nasal drip. As soon as I got my first chemo tx, the long term PND stopped and all the chemo SEs took it's place as annoyances. But today, 28 days after my final chemo tx, the PND is back. Not that I'm happy about it's return...just as a point of interest regarding how long the effects of chemo last. I'm sure that there are other long-term effects of the chemo to contend with. But as of today, I honestly think I'm chemo-free. Hope that means I'm cancer-free too.
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Bon - All will start getting better on a daily basis. A thread was just started on the long term effects of chemo. The PND, is it allergy related, seasonal? What do you do for it?
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bon
are u on the sept or oct rads group? some great info there also
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CT124...I'll check them out., Thanks. Bon
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Bon I had acid reflux too, but Prevaced over the counter healed it, I am perfectly fine now. Please try that. The nurse told me only afterwards that I need to take something for acid reflex, only after I had suffered for a day and a half.
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Lovelyface...I went with Prilosec after weeks of suffering and am still taking it even though all the directions say you should only be on it for 14 days. I've tried to stop but can only keep the GERD in check with a combo platter of Prevacid, Tums, Gas-Ex and Pepcid. My purse is loaded with pills!
CT124...I did go to the rads board for those starting tx in September and have asked if anyone has or had any of the issues I've experienced so far. One respondant with no SEs. Waiting to hear from others. I do get to see the RO on Tuesday so will give him all my questions then. Am thinking that maybe I won't continue with rads. If only 4 tx have been the cause of my 'symptoms' I do not want 29 more tx.
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Hi Bon, I have had GERD for may years and kept it reasonably but not fully under control for ages with OTC Zantac. When I was put on Arimidex I was also given a prescription for Pariet. I have been taking one per day for the last 17months and haven't suffered from reflux since even when I've been bad and eaten something that I know used to upset me. I have had good succes with this and it is the lower dose of the two available. I thought maybe if you spoke to your onc about Pariet it may work for you as well. Blessings.
Love n hugs. chrissyb
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This morning after radiation tx #5 I got to see the RO. He listened carefully to my description of the aching under my arm and the shooting pains in the lower part of my breast. After lots of poking and prodding, some of which was a bit uncomfortable, he says that it is related to the rads tx, not anything that could mean a recurrence. He says it's early inflammation of the breast tissue and chest wall and suggests that I treat it with massage, no lifting or excess stretching with that arm (the right) and to take an OTC anti-inflammatory, and to wear only a sports bra. So there you go...even after only 4 tx the rads I have SEs. 28 to go. Hope it's worth it.
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Bon,
I hope to hear that things are improved. Radiation scares me esp after all the SEs from chemo. I go nxt week for planning and sim and then will start 1-2 weeks later. I am also concerned with expander still in place. Hope to hear you are feeling better.
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Saw the BS yesterday and don't have to go back for six months! Hooray! That was great news. Today was number 9 of rads tx. 17 more regular tx to go and then 7 boosts. If everything goes as planned and without any problems I'll be done with rads the first week of Novmeber.
As bad as this is, things truly could be much worse. I just heard that one of my former clients, a young woman in her 30's, had an auto accident today and is paralyzed from the neck down. I'm truly humbled to say that I'd rather deal with this cancer than that. Please say a prayer for Sherri.
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Hi Bon,
I will pray for Sherri. Yes, things like this are truly humbling. When I was diagnosed, I thought a lot about one of my old work buddies. He was diagnosed with some sort of degenerative spinal disease when in his mid 40s. He will never be right again, and this trashed a brilliant career.
I could not feel sorry for myself.
Right now, I am looking out across the Puget Sound with a shaft of sunlight playing on the otherwise dark grey water. Just the most amazing sight. I am truly blessed. - Claire
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