Starting Chemo September 2015; join us!
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mLisa, canjiun, exercise, Katie& wlTigre thanks on the congrats. I'm thinking of all us sept ladies today. It was still summer when a lot of us started and now it's almost winter. Seasons of the year and seasons of cancer. I took my dad to a cardiac appt yest- he's 89 & had triple bypass with pacemaker 6 yrs ago & had heart failure in March of this year. He has been on injection insulin since I started chemo after only taking pills fr diabetes since dx at 60. Well he did phenomenal at heart dr. Doc said dad just keeps plugging along. Made me think if he can survive worse crap than me I better be able to make it to his age.
I also met one of his nurse who liked my hat & said she used to wear a lot of them a few yrs ago. Turns out she is almost a 5yr survivor. Had act & bilateral. She said her curly hair grew back straight. I told her mine was normally straight so maybe I get curly? But overall it was nice to meet a fellow survivor who went thru the same chemo. Sometimes the world is a small place when you meet another BC person. It's a club that no one wanted to join but it's a lifetime membership. Hope we all can meet NED soon and have him stay in our lives.
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Hi everyone,
Checking in and catching up on posts.
I have my 5th chemo tomorrow. I'm dreading starting the cycle again.
After this I'll only have one left so I have to keep my eye on that. January can't get here fast enough for me.For those talking about steroids bothering you. I haven't had any issues from the steroids (sleep great), but I have been taking them incorrectly from the start and that's probably why. My Rx says take 2 pills twice per day. I was only taking 1 pill twice per day. I didn't notice this mistake until my 3rd infusion and asked the doctor about it. She said it was totally fine since I'm not having any swelling. That's what the steroid is meant to prevent. She said she'd rather have me take less meds if I don't need them. Just something to ask your doctor maybe if the steroids are giving you trouble - maybe you can take half a dose?
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Just curious, anyone thinking of monitoring their glucose after chemo & rads, since cancer loves sugar?
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Indirectly. I'm still with weight watchers. I find that a low carb/low cholesterol diet gives me the steadiest weight loss. But it means eating things like tea & egg white spinach feta wraps for breakfast; chicken salads for lunch; and salmon with asparagus for dinner. Every so often I just really want some hot chocolate so I don't know if I could do the "perfect" cancer fighting diet.
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DLcygnet - yeah i usually go low carb but with the benefits of berries i was wondering how much they spike the blood sugar. Thanks to steroids my sugar spikes every treatment so I have no idea on what it is now. I NEED chocolate every now and then. Dark is supposed to have good antioxidants..
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If this helps...I know that eons ago when I tried the Atkins diet, the only fruit you were allowed to eat were berries because they had the least amount of sugar.
http://healthyeating.sfgate.com/fruits-vegtables-good-low-sugar-intake-2148.html
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edwsmom - thnak you that does help. We are trying to form a diet to consume after this chemo for 2016. Nothing like setting goals
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My mom has the cancer fighting kitchen cookbook. It even recommends buying your bananas as green as possible if you want to eat fruit. She already avoids watermelon and similar sweet fruits to keep her numbers under control.
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Lisa, I'm sorry you have to make those choices.
There is NOTHING easy about being a young mother with cancer. Nothing. el tigre, Green bananas have very low sugar as well. They have to be really green.
As far as Claritin, I really hate all antihistamines, so I've been really reticent to try this. However, I have been blown away by the pain, so I guess I will try it on the next DD round. This has by far and away been the worst pain experience, so I didn't know in advance that I should have tried this, but I'm going to start before the next round.
I was thinking today that I'm coming up on my 5 month cancerversary... In the season of the spirit, I have written my cancer the following letter.
Dear cancer (a love letter),
It has been almost 5 months since we met. Like most dysfunctional relationships, we have had the highest highs and the lowest lows. You have made me ask more questions about life than I ever wanted to, but in the end, I already had the answers that I needed.
You think because I'm scarred, I'm broken? I'm not. I have, and will continue, to heal.
You think because I'm bald, you can make me feel ugly? You can't. My worth is not measured by my hair or body.
You think because I'm tired, I'm going to give up? I won't. I have the ability to go the distance.
You think because I've faced death, I will doubt my faith? I refuse. For though I walk through the valley of the shadow of death, I will fear no evil.
You think because I've been hurt, I've suffered? I haven't. I have the peace that passes all understanding.
You think because I've been afraid, angry, lonely, sick, and sad, my God has left me? He didn't. And he never will.
I don't know why we had to meet and I may never know in this lifetime. And I can't say I would wish this on anyone. But I do know that you have changed me in ways I didn't know possible and I will use this experience to help others. Whether we meet again next year, 20 years down the road, or never, you can't take that from me.
Love,
Liz
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So happy to hear the end of chemo or close to it for most of you. Im still recovering from my last round of docetaxol that is some nasty shit. One more round Xmas Eve and hopefully Ill never have to do it again. Everyone tellsme what an inspiration I am but truth is at home Im a basket case. Im not sure what medication Ill be on for the next five years Im post menopausal. The side effects to medication sound shit too. Ive gone from being energetic fit 46 year old to a grandma. Everyone has already started telling me how its nearly over and things will go back to normal in the new year. Because radiation scans doctors appointments surgery taking meds everyday and feeling like shit is my new normal yeah I cant wait. Sorry but Im on a downer and this is the only place I can express my real feelings.
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Nice letter CAJUN!
Clinque - i get that too. everything will be back to normal after chemo, ppfftt yeah right! even after rads it won't be normal (better but not like it used to be). Some people don't understand what we go through and say stupid stuff to us. I try not to smack them but I may do so soon.
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for those that finished chemo any hair growth yet? Is anyone taking biotin?
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Cajun - What a wonderful letter - I really took a lot from it, thank you.
Cinque - I too went through depression and tears when I read about the SEs of my eventual maintenance medication. They suck - big time.
I've moved into the "planning for the future" phase, which I'm enjoying the heck out of. I've talked my bestie into taking a blow-out trip to Hawaii winter 2016-17 (exact date TBD). Fuck you, cancer. Fuck. You.
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With the claritan take either a tylenol or ibuprofen. It has to be both. And it shouldn't be claritan D. I do this night before neulasta, day of and for 3-5 days after depending on how it goes. I've never had to go past Friday. I've had no pain. I hear on Taxotere alone you don't get neulasta since you have 3 weeks to recover so I'm glad I'll be eliminating 2 pills from the pill box.
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I took claritin tylenol ibuprofen norco benedryl then tylenol 3 and the kitchen sink. Nothing helped. The pain was staggering for 5 days.
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Hi Shopgal, I saw on another thread that DeeRatz has more hair now and that she's taking Biotin. I'm 42 days PFC and I don't have much new hair growth. Just some duck fuzz that I re-buzzed last week. Still missing eyebrows. Also, I feel like I'm still loosing eyelashes...every single one drops right in my eyeballs.
Hazel
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thanks hazel.
Cajun beautiful letter. Thought I'd repost this article I found on another BC board tonite as I often re-read it as my feel better mantra
The Things I Wish I Were Told When I Was Diagnosed With Cancer
Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.
You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.
You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.
The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.
The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.
You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.
You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.
When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.
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beautiful! Thank you for sharing shopgal! My last infusion was 10/28 and I have the duckling fuzz coming in strong and some growth of my left behind brown hairs. Eyebrows and eyelashes have thinned more
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Cajun your letter was beautiful and so inspiring. Can I print it out and put it on my inspiration board? I have one inside my room that I post inspiring posts and pictures of things I want to do when I am done with treatment. My counselor talked about "learning to walk with cancer as a companion" she says you can't make friends with it but there has to be a way that you have some peace in your heart. I have come to think of Cancer as a disobedient dog. I walk the dog everyday and sometimes it pulls on my leash but I don't let it drag me down the road.
about the uncontrollable crying and fatigue I experienced that from TCH 5 & 6 this was about 7 weeks off and on. I take an ativan to sleep everynight and I considered switching to Anti depressants. I just didn't want to do that right before my surgery. The sun has just come out for me this week. I actually mopped a floor today and loaded the dishwasher!! yah me!
For the bone pain I took Norco and claritan(24hour) TWICE a day. I still had bone pain but tolerable. Without it the first time I was laying bawling my eyes out.
Minnesota: I need to start doing this. I am hoping I can ride my bike next spring, I have a girlfriend I ride with and I so want to feel the wind in my HAIR! Also we might take the kids to Disneyland if We haven't spent all our savings on cancer.
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Thanks, ladies!
I'm going to try the Claritin. If it works, it works, and if it doesn't, I'm prepared to deal with 3 more rounds of this. I suspect the lingering bone pain is the Taxol and not the Nuelasta, because the Neulasta hurts all over, whereas this pain is only from my waist down.
Cinque - that's probably the hardest part to come to terms with. It's not over. It will never be over. I will have permanent and lingering effects from the treatment, from menopause, from the AIs, and worst of all, from the fear of recurrence that will come with every new pain, every PET scan, every blood draw. Most people don't understand that, and they never will. But WE get it, you can always come here.
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Shopgal, love it! When I was first diagnosed, I wanted it OUT and I wanted to get moving on treatment. I had no idea how truly life-altering this process is, in every way, shape and form.
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Shopgal, not seeing much hair growth 4 weeks PFC....not much fuzz either. I do have hair growing in back, but it is the hair that never fully went away getting longer (I never could bring myself to buzz.....). FWIW, it is the same color and texture as what I lost. I wonder if I am being too impatient, so trying just to hang in there.
I stil have my eyelashes, my eyebrows are half gone. The hair on my legs and elsewhere private hair never did go really away. Go figure.
I will know my hair is back when the one hair that used to be on my chin comes back. One can only hope! (jk). There are photos on the Hair, Hair, Hair thread including some that Sloan from August chemo posted. They give me some comfort but I am still so anxious for it to come back.
Cajun, your letter is inspiring (even though I do feel like my hair is part of my identify, so not sure I can agree with that part...wish I could feel like the hair didn't matter....). I think I might write one of my own and put it away somewhere to read in a year. Thank you.
Cajun, the Claritin really seemed to make a big difference for me. I hope it does for you also.
Hugs to all of you
Octogirl
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Thanks octo. ACT took all my hair. Rocking the bald here. I have colorless stubble growing sides and back. Top I can see my shiny bald in between a few colorless stubble. Met a 5 yr survivor yest who told me it really takes off at 6-8 weeks. Sounds about right cause that's when my mo told me today that I'd start to feel better since the chemo SE's would be really moving out of my system. As for brows mine are sparse, eyelashes are so few I should name them, and my Brazilian and underarms are silky smooth. Alas my legs seem to have some stubble or it could be dry skin. My eyesight degraded on AC so I can't see close up. Gotta get my readers out tomorrow to check out my legs. I think I shaved them last in sept before chemo 2. And I saw sloans pic; so cute. Oh octo I do want to let you know that you inspired me with a search for a purple beanie hat. Finally found one last weekend. My beanie hats are most grey and blue so the purple is a real find.
Cajun first neulesta after AC was rough; some lingering SE's. It improved in following infusions. No nasty for me this last time. I just gotta be careful going forward about exposure to germs before deportation on 12/21. I think I gotta dig up some face masks if Ihave to head out this week in the public to avoids germs.
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Shopgal, if you got that purple beanie on line I'd love it if you posted a link! I do have a purple knit hat I found in a hat shop; it is really cute but it really is an outdoor hat (and is something I will wear even when I do have hair)...and was just thinking today that this is taking so long and I am so sick of the caps I have: I need another one!
Just to be clear, I am also shiny bald on top....that is part of my anxiety: the hair that is still there, other than a few strands on top, is stuff growing that never really went away in the first place. I hear all this talk of fuzz, and wish I had some to talk about...
Oh well...sigh.
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exercise - of course you can print it! I love that you love it.
The idea of cancer as a disobedient dog just cracked me up!For those struggling with the hair issue, I'm sorry! My hair that hasn't fallen out yet is still growing, but the part that did has not changed at all. I have gone through a lot of body changes in 3 years. I went from being a thin distance runner with big implants and a 6 pack who was very proud of my body and shape to.... well, the twins gave me "twin skin" even though I lost all the weight, so my stomach looks like that of an 80 year old. I have 2 c section scars that are still visible. 5 visible scars from the breast surgery and ALND. I have diastasis recti (total separation of the abdominal muscles) from having 8 lb and 6 lb. 6 oz twins and 10 lb 10 oz son all in 16 months. So even when really thin, my stomach always looks untoned and flabby, which would require major surgery to fix. And now bald. And the chemo is making an already bad dental situation worse (dentures may be not that far in my future).
I've had to redefine what beauty is for myself. No, I can't wear a bikini anymore. I may never run a marathon. The scars will always be there, even though they will fade. I'm going to be mostly bald for a long time. I may lose my teeth. But this body gave me 3 healthy, full-term children. This body is BEATING cancer! This body gets me out of bed every day, even when it hurts like hell. This body holds my children when they hurt. This smile always make them laugh. It may no longer be a magazine body, but I LOVE it.
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my sister found my purple beanie in a store on clearance. It can be worn indoors & outdoors. It's pretty light weight. I did see a few cute purple
yarn cold weather hats at Burlington coat factory. I have a lot of baseball type hats with brims from kohls but the back of my head sticks out in those. Too cold now on the east coast for them now brr.0 -
My deepest heartfelt thanks to all you brave women here. You radiate strength and hope and keep me fighting.
Waking up to so much courage and inspiration on this forum, I know today has to be a better day. Special thanks to cajun and shopgirl for your posts.
Scraping myself together after three days of emotional hell that thank god finally started to ease yesterday evening. Looking at the timing and remembering my similar extreme crash a few days after my first FEC dose, I suspect (and desperately hope!) that it was caused by the several days' high dose steroids plus the three poisons making up that chemo. I felt completely overwhelmed with terror, agitated as hell (so much that my blood pressure shot up) and I literally could not stop crying and sobbing. Thank god in heaven I'm past that and thinking/feeling more calmly again. I hope/pray I have the courage to roll up my sleeve for yet another dose of that stuff the week after Christmas, so I don't end up beating myself up with guilt for not doing "everything" if/when this BC rears its ugly head again.
"Thank you" doesn't even touch what I feel
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I am grateful for this new day.
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Well, I won hospital admission #2. Monday the car door and I had a fight and the resulting injury got infected. So iv antibiotics until it shows signs of improvement. So might get to go home tonight. If not tonight then tomorrow. Don't be a klutz on chemo.
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Tessu, I'm so glad you are okay! The ups and down on this journey make me feel crazy. One minute I'm singing, the next I'm crying in terror. You are not alone! You can do this last dose. I know you can.
Skittle - I fought the car and the car won! But seriously, not making light of your admission. Hoping you get discharged asap. I injured my bald head on the kids' door last night, hoping it doesn't get infected too.
Love you ladies!!!
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