Sept 2012 chemo
Comments
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I think finding ways to take the middle road when you can makes a lot of sense. I, like you Jojo, have had a healthy lifestyle for sometime- and I still got cancer. But, at the same time, I know that I can make some healthy choices - like making oatmeal pancakes and when it is my child's birthday- definitely eating cake (but not two or three slices)! I think sometimes I get angry thinking about what I have to deny myself - especially when I see so many people eat whatever they want and not get cancer. But, I am trying to look at my choices as being positive rather than negative. Exercise I think also needs to be an important part of my life plan. I have a three year old and a six year old- I want to do whatever I can to lessen my chances of a recurrence so I can be there as they get older.
Here in the bay area, I have support group friends who are doing the whole gerson diet thing... coffee enemas, juicing constantly, vegetarian diet. So for me, I feel like I am definitely more middle road than they are! I want a long life, and I need to figure out how it can be one that I still enjoy! The hardest part for me will be limiting sugar. I love sugar!!
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Well, thanks to a lot of wonderful people on this blog and the encouragement, I called my onc dr. (I kept thinking that I should wait until I saw her next Tuesday) I thought I had it together but burst out crying while I was trying to explain to the screen-er why I was calling. I spoke with the nurse who tried to reassure me that it is to early to say that my hair would not come back. She felt that the 4 to 6 weeks that the websites say that hair should start to appear should really start 3 weeks from the last chemo treatment because that would be when your next treatment would be and what your body is accustomed to. I had never shaved my hair and still had a few strands like an elderly man doing the comb over and the nurse felt that was a very good sign that my hair follicles weren't damaged. She thought it also made it more difficult to determine if there is any growth. She said that in her 8 years at the center, she has only seen one person that did not have their hair return. (doesn't mean I can't be the second!) Dr. Scot Sedlacek did the research on taxotere and permanent hair loss but she believed the study did not cover common indicators for the persons that had the permanent hair loss but would search their database for information. The nurse gave me more hope but I hope it is not false.
Cindi74, you are so right that I am not my hair. I need to remember that. I'm afraid I did not fall in love with my wig and kept thinking how great it would be to go out in public again and not be so self-conscious. It was a shock when people on the blog started talking about hair & I had nothing! But after everything we all have been thru, I am happy that there are people getting past the side effects of chemo and feeling better and better. I'm glad there are women getting their hair back; I just want to be part of that group too! After starting this "cancer journey", I realize how horrible it is for the patient and their families and I cheer whenever I see a post with good news.
Thanks all (Neta69, Mariposa123, FaithFocusFinish, Nancy44, Toastiecat) for words of encouragement. I do not go to a support group because it is about an hour away. I only told a few close friends about my diagnosis and quit the volunteer work that I was doing. So this group is where I get the encouragement and hope to keep going and also know that I am not alone. So many times I have read a blog and it is exactly what I am experiencing and feeling!
I am now taking deep breaths. I'm going to look into the biotin and Castor oil. The wait begins. Wishing everyone the best thru the rest of this trip.
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Terri - Hang in there. (Said the woman with exactly the same 99 strands of hair on her head that've been there since October!) I've adopted this as my go-to hair anthym: India Arie, I Am Not My Hair. Turn up the volume, and listen to the lyrics - includes a verse about chemo.
I am not my hair
I am not this skin
I am not your expectations
I am not my hair
I am not this skin
I am a soul that lives within -
I see the cancer nutritionist tomorrow so I will let you all know what she says. But I'm with JoJo as well. We all know what healthy eating is. I just have to do it. I bought my last piece of cake today. Hate having,this "new" sweet tooth! No more sugar!! I've been walking 30 minutes every day which is something I didn't do consistently. I'm also anxious to hear what she says about supplements. How do you know if what your taking is of good quality? I cannot go vegan. I love a good steak once a week. Grass fed steak is not bad. Organic chicken, I cannot do. I'm also cutting down on alcohol. I used to love drinking lemon drops but the thought of vodka makes me gag. I like protein drinks with spinach and chia seeds in it. So I've made a few changes already. At least I'm aware of what to eat and what not too! But I'm sure I will learn more tomorrow.
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I absolutely love that song. My 7 year old and I sang it all the time after I shaved my head. I think it's good to show our kids that we are the same women. Hair or not. And agreed that we can look at others and empathize more. Ill never see cancer the same way. I only hope I can help someone else down the road. That's my huge desire! Be well.
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Don't you wish sometimes there was a way that you could "like" posts! I love that song too:-)
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Terri--Sending you hugs. The last time I lost my hair in 2009, hair didn't grow until around the 9th week post chemo. After it started growing, it came out all gray for a few weeks before turning into black. Then I kind of had a cul-de sac pattern that my then 3 and 6 year olds pointed out. I just recently read on the Hair, Hair, Hair forum that rubbing aloe vera (fresh) will help stimulate hair growth. Hang in there.
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Terri..I've been using that Moroccan oil on my head. Its suppose to help as well plus it smells heavenly! Your hair will come in. It's just being stubborn! Hugs to you!!
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Hey all! Went for my pre-admission tests. Wow! My hospital really has a rigorous routine in place for anyone having surgery. First you sit with an administrator to go over paperwork and insurance and booking a room. Then a pharmacist to review any medication you're on and how to manage that for surgery. Then a you see a doctor - just a gp - who does a basic, basic physical and reviews your medical history. Luckily it's the same hospital that I have been doing chemo at so she could look up my file on the system but i've also kept meticulous notes of everything and have copies of everything that I bring to every appointment (the bag has become super heavy!!). Then you have bloodwork taken. Then you see a nurse who really sits down with you to get into a step by step play by play of how things are going to unfold starting from the day before surgery until the day you're discharged. The hospital also gave me a pamphlet with all this information as well. "What to bring the day of surgery" list included a living will. Gulp.
But otherwise, feels good having that target ahead of me now.
I love, love, this new discussion everyone is having!!
1. I want to continue taking my notes. Most medical professionals I've seen since doing this have really appreciated it. I would love to get a better understanding of how the medical system works, too. It just mystifies me how health care varies so much from province to province in Canada. Maybe back to school for me? Career change?
2. I, too, found taking on research too much of a daunting task. Everything I've learned about anything with my type of cancer that didn't come from my MO was from this site. I will follow any link you ladies post and I am so grateful for your time to do the research ahead of me!!
3. I need to worry less. That is my primary goal. I used to worry too much. I really think stress contributed to my cancer. So this summer I want to eat healthy, exercise and learn to de-stress. I'm planning a big vegetable garden in my back yard and hoping it can provide some exercise, zen moments and good food!! I'm looking into yoga classes (I know nothing about yoga!! Help!) and acupuncture because Neta said it worked so well for her (see, that goes back to my #2).
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I saw my MO yesterday. She says I'm right on track (with still feeling the way I am feeling). I did not get blood results before I saw her, so I hope everything is okay. I got my port flushed and then blood drawn. I asked her about seeing the nutritionist too. She made a note of it and is going to ask her to call me.
Yes, we all know what we need to eat - like Hope says, we just need to do it. For the past few years, I have been trying to incorporate more veggies into my diet. I do fruit smoothies in the morning and eat pretty well the rest of the day. I need to exercise more too. Last night, I did a workout tape for about 60 minutes - modified. I could not do everything at the intensity they were, especially with my arms. But I am trying!! MO said the shuffling and walking like a little old lady is still normal for now.
Last year, I got rid of all personal care products with Parabens, etc. I read all labels very carefully now. I will be going to Sephora to reseach their facial products that are organic in nature. Our skin is our biggest organ and absorbs everything faster than if we eat or drink something. I am going to do more research on this area.
Whenlife - What a great song! I had not heard that before.
Terri - Hang in there! We are not defined by our hair, our boobs, our looks. Our character defines us as a person. Cancer cannot take away our character. Your hair will grow! Keep the faith! : )
I'm off to work my 9 hour (1/2 day). Yeah! MO gave me the 'business' yesterday for not sticking to my 1/2 day plan. Something else I need to work on. She said I needed to include my 2-hour roundtrip commute into my 4 hour day. Work 2 hours - drive 2 hours? That doesn't make sense to me......deep breath.....
Have a good day everyone! Hugs to all.
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Good questions Whenlife!
1) I'll stay involved as much as possible (I'm too much of a control freak not to). I keep copies of all my files so I'm "portable" should that be necessary. I'll keep bringing things to the table (new research I've read about, clinical trials, alternative treatments) but in the end I defer to my Drs judgement on it. I also won't hesitate to go outside our public health system to get things like scans done if I feel I need them. A friend has recommended a Dr who specializes in holistic, naturopathic medicine. I may see him as well but I'm not sure about that yet.
2) I read research news but at the moment I'm trying to reduce the time I spend on breast cancer. For me mental health has been important and the things I have read and liked are mostly related to coping with survival. "Dancing in Limbo" and "Living Well Beyond Breast Cancer" were both good. My psychiatrist recommended "Mind over mood" which is a workbook. I haven't looked at it yet.
3) Changes in my life include exersize and diet. I go to the gym, do yoga, walk my dog and try to stay active. My Dr says it is THE single most important thing I can do to prevent recurrence. Diet changes include more fruit and veg, more whole grain and things like quinoa, chia seed, hemp hearts and buckwheat (for omega 3 etc) and green tea. I take some supplements as well. I try to eat less meat, fat and sugar and I hardly drink alcohol at all. I buy as much organic food as I can afford. I try to stay in the moment as much as possible and enjoy the small things. I procrastinate and worry less about unimportant stuff. I'm far less concerned about material and superficial things. I have learnt what real friendship is and who I can count on and I cherish those friends. I don't invest my time or energy in people who don't make the "real friend" cut anymore. I want to "pay forward" the support I have had from all of you and 4 amazing bc survivors I have corresponded with since my diagnosis. -
My BS called this morning with my pathology results... 22 nodes in total taken all cqme back clear. My breast tissue still had a 1cm residual tumor but since they took all the tissue my margins are clear! Great news and a nice phone call to wake up to... Have a great day ladies I will be off to get back on herceptin this afternoon.
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Yay, Amy!! Great news!!!
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Good news Amy!!!!
Neta: I just love what you said. "I don't invest my time or energy in people who don't make the "real friend" cut anymore. I want to "pay forward" the support I have had from all of you and 4 amazing bc survivors I have corresponded with since my diagnosis." That makes so much sense to me... and I think it is an important part of our recovery . Thanks for putting words to our experience.
I am still sick today. Fever of 101.9. I think I am far enough away from chemo that I don't need to call anyone... but maybe I should. I am home taking care of my son. Luckily he is the easiest child in the world. He sits on the bed watching movies on my kindle while I sleep. I keep thinking today is my last Wednesday with my original boobies. Kind of weird.
Hope everyone has a nice day.
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Yeah Amy
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Mariposa- Sorry to hear you are sick and with a fever. Please call your PCP and/or onco to let them know you have a fever. You may have an infection and may need some antibotics. I know that isn't what you may want to hear but your counts are still down after the chemo is finished. Mine are still in the low range and I'm 5 months PFC. Hope you feel better soon!!!!! PS Love reading your posts...... you just tell it like it is and don't hold back. HUGS!!!
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Mariposa, I too had a fever (101-102) and felt awful the week before my surgery. I alerted my surgeon's office and they advised me to see my dr to get an antibiotic to make sure surgery wouldn't get delayed. I went in to my MO's office and he did a lot of blood tests, a blood culture, a urine test, a chest xray, and an echo - my heart rate was at 130bpm. He also prescribed me a strong antibiotic (just in case I had an infection). They won't do surgery on you if you have an active infection (wisely!). I didn't want my surgery delayed so I did everything I could to make sure I was better by surgery date. They never found anything wrong, and I felt better just in time. Maybe the antibiotic did help?? I hope you feel better ASAP!
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Calling my oncologist now. Thanks ladies!!!
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Great news Amy!
I love reading everyone's responses to the questions. I want to continue to be an active and informed patient, ask questions, make sure I feel comfortable in my level of understanding of what my medical team advises. I have avoided the Internet (other than this site and I use it for the support and community) or other books for research. I actually have made the choice to not even ask about my prognosis in terms of statistics, my mom and my husband had the conversation with my MO and I excused myself. Right now I hate statistics, so I am choosing to focus on knowing I will be cured. I think as I get further from active treatment I would be interested in reading the anti cancer book and the emperor of all maladies, but it's too close, too personal now. As far as lifestyle changes, eating less meat, more plant based diet and more excercise. I have always been an active person, I actually like working out, but now it will take even more of a priority in my life. I have also started doing guided mediations. I never thought of myself as stressed out, but I want to be more mindful of stressors in my life.
I agree with Jojo and neta about having a balance and finding a way to pay it forward.
Mariposa- hope you feel better soon...your counts are probably still low, so it would hurt to call the dr. I hope you take lots of pics of your boobs. I took a few of me nursing my daughter and I do like to look back on them and remind myself they did a lot of good, but
they had to go.
Terri- hang in there! I feel like once we finished treatment we want to just snap back to normal, hair being part of that, the waiting is so frusterating! It will come.
Thanks for being such a great support ladies, you are all strong and amazing! -
Fantastic news Amy!!!
Mariposa - So sorry you are feeling under the weather. I think it is a good idea to call MO too. I am sure you want to stay on track.
Neta - Couldn't have expressed it any better. Thanks for sharing. You are absolutely right on target.
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As always so much knowledge here!
Amy, celebrate! Mariposa, sending healing energy your way.
13 of 33 rads done. Feeling well, early to bed each night though. Boob looking more radiated now (looks flushed). My scar was looking great before rads now its red. I will say sleeping better during rads than I have since diagnosis.
Whenever I even slightly think about my diagnosis date I feel anxious. I can't imagine how I will feel on that date. Hope I can figure out something wonderful or self fulfilling to do that day. -
Jojo - Look at your hair! Wow! It looks great! Almost 1/2 way done. You're doing it girl!!
I've noticed lately that I am feeling just so overwhelmed. I think back to the day I heard the news-begin to feel very anxious then relive these past several months. I guess something similar to post tramatic stress syndrome????? I then begin to think about work (whole other subject) - and everything that needs to be done there. Then, I think about me ... my health, my exercise, my diet, my family, my friends. How am I going to fit everything in that needs to be done? Then, it hits me ... why am I thinking about work first? There is something wrong with that picture. I've been back to work since January 7 and it has been really hard. I find myself waking up and dreading to go in. I have a 2-hour commute round trip and in between my drive, I am working 8-10 hours a day. Trying to cope with everything is just so hard sometimes. Maybe I'm feeling this way because I'm still so far off from feeling like myself. I keep telling myself that I need to just let my body heal. Regrettably, since I have to go back to work, I don't feel like I can properly let myself heal....
Thanks for letting me vent a little. I can show my vulnerable side here because I know you all will understand.
Hugs : )))
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Faith, I feel exactly the same. This week has been very stressful at work. The old me kicked into overdrive during these days and loved it. Now I get overwhelmed and chemo brain takes over. I then totally visualize stress kick starting tumors all over my body. The fight or flee choice quickly turns to flee in my mind. I have to work, but feel stress is so terrible to my healing process.
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Terri, about 4 weeks after my last chemo I completely lost it over the no hair thing. Call it denial or whatever, but for some reason I kept picturing: "chemo's over, hair comes back". Well in my head, I had it all worked out that it came back as a "style" not bits and pieces of stubble. I threw a fit that would rival any 3 year old. Thus began the obsession; rubbing my head wondering when the pieces that were left would fill in and why was it taking so much longer than what others reported.
Then one day I noticed that the rubbing didn't feel like stubble anymore; it was soft like other sweet ladies have described. That's when you will know for sure and it will be the most amazing feeling and you will begin to breathe again! I understand your anxiety and since I worked on my good days I had to wear something. I hated my wig that looked so freaking cute on the mannequin head and so awful on me; the fake bangs always ended up sideways under my caps; and the thought of wearing one more head scarf made me want to scream.
Regardless of these posts, you will still worry until you get those first sprouts but I wanted you to know, I get it and you are not alone in the way you feel. Hope and blessings that it's any day now, I look forward to your post that lets us know it's growing! Be well, Nancy
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JoJo amen, and your hair looks great!
Amy that is fantastic news!....
Marian belated Happy Birthday!
Cindi you are almost done, rads around the corner....freedom!
I find myself staying away more and more from BCO I just feel right now I need to get cancer off the brain. I do check in though! I have a muga scan on Monday and herceptin on Wednesday so I still am not free.
May everyone have a happy week!...with No SE ... -
Amy, Fantastic news! I'm so happy for you!
Mariposa, hope you feel better very soon!
Jojo, I bet you will see your hair grow from day to day now! By the end of this week you will be more than halfways with rads!
I am in awe of those of you who work. I couldn't have I'm sure. You are amazing!
Coco bean, I feel the same about some information just not being helpful at this stage. I'm making a conscious effort to spend less time on the disease aspect of my life and more on the normal part. That means trying to turn off the cancer channel playing in my head and focus on healing. You mentioned how you choose to know you will be cured. It reminded me of something one of my survivor "pen pals" wrote to me. I thought I'd share it.
"After a while, however, I decided that I did not want to live or make
decisions regarding my health from a place of fear. I made a conscious
choice to try and live in hope rather than fear because it was simply a
less painful way of existing. This choice was easier to fulfill when I
focused on the day at hand. I focused on what I could do specifically
"today" to heal my body and my soul. I committed myself fully to the
process of healing and this immediate task helped me set my course."
Hugs -
Amy....I'm doing the Happy Dance for you!!
Mariposa....Eat some chicken soup! Hopefully, you can get on an antibiotic! Close your eyes and feel the healing energy from all of us enveloping your body!
Congratulations to all of you doing rads. You all inspire me so much. Your all so strong and you just do it!!
Will tell you about my appointment with the nurse/nutritionist later. I'm too tired and I have a red boob for some reason. It's not hot, doesn't hurt....I see my PS tomorrow. -
Hi ladies,
Finally home from the extended hours clinic. I have a prescription for antibiotics and I need to go in tomorrow for a chest x-ray. It took them forever to see me in the clinic and I started crying. I am sure they all thought I was crazy. Oh well. I think I might have a nervous breakdown if they reschedule my surgery again! I have just been waiting so long to get this thing removed.
Anyway, thanks again everyone for urging me to go to the doctor! What would I do without you:-)
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Had an emergency visit to go see my plastic surgeon yesterday. I was suddenly having huge pains in mu right breast near my and in my arm pit area it even hurt when I took a deep breath I assumed maybe the drain tube got pushed on a nerve when I had my fill the day prior. My doc was in surgery all day so I saw his partner who said to me it was my peck muscle having a spasm... He told me to take more.valium.and call it a day.... I go back to see my doc again today. I do not think its a spasm since today it still.hurts like hell and my range of motion is not nearly as far as it was cause it hurts to move my arm away from my body.
Today I am.gonna insist they take the drain out. Its only producing right at 30cc anyway. Then on my way home the occupational home therapist called me.and asked me who preacribed me the exercises I have been doing since both my bs and ps said it wasnt them. I explained to her it was the ot that makes.their rounds in the hospital. Her thinking is my right side is hurting so bad cause the excersises are to much for me at this point.... So I am kinda confused as to why I am hurting so badly but I really wish everyone would get their heads out of their asses and figure it out cause I am so drugged up on valium, hydrocodone, and ultram to figure it out myself!
Last time I checked I was the patient not the doctor! Grrrr -
Good morning ladies!!!!!!!!......
Amy i hope that you the pain goes away soon........
Mariposa......i hope the antiboticts works
Neta....i will focus on working out and eating healthy too....i do eat healthy but cant work out cause i get tire quick but my last chemo is tomorrowwwwwww so i star slowly but surely......
So my ladies got a date for my surgery 3/21/2013 at 7:30am......
i had a nervous breakdown before they i even got the date for surgery.....but today i feel good and i will only think about you...... my fighters got through and I WILL also get through......so from here on i will mentally be ready and soon physically ...MOnday will be y first walk......i will not push it..but i will stay strong......
This morning i woke up and my DH gave me a kiss on my forehead.......and hugged me .....i felt his tears running down my face.....and i asked him why is he so sad........he said that he will be here next to me no matter what and that he loves me so much and he couldnt live without me.....
...... i let him cried......then i looked into his eyes and reasure him that everything is going to be alright and that im a strong person in and outside and nothing can stop me not even cancer....... I know that i cant always be strong.....but as i see my husband so sad and hurting i realized that i WILL stay STRONG .....i am their foundation.... i now longer fear surgery ....i feel that he is more scare then i am.......i dont want him to feel that way .......
and the only reason i feel this away because of all of you >>>>>my WARRIORS........thank you pain r no pain i will be ready!!!!!!!
Tomorrow i will wear my warrior face like everyday because as i fight i become stronger and stronger..... i put up a hell a fight and im still standing........and thanks to chemo im still here!!!!!!!!!
...........Im not fighting chemo im fighting cancer.....so im going to sit in that chair and enjoy my last chemo that is killing my BC....
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