August 2015 Chemo Group
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I was "off the air" for a few days just taking a mental health break. These boards are really helpful but sometimes it is healthy to get away from the electronic devices for a bit.
Just catching up and hoping everyone is doing well.
Cheri, have you been back in to have your hemoglobin measured? If you are feeling that badly they might consider giving you a transfusion. I had one (just one bag of blood infused exactly the way the chemo is) and it worked WONDERS a few weeks ago.
Yesterday I got the first of 6 FEC treatments. It is three separate drugs, two are "push" and one a regular bag IV. The steroid dose is doubled over what I had with the carbo, so that will be fun (not.) Today I feel like I've been hit by a truck.
For those not yet finished and with more to go - stick around, I will be here a while! My FEC is every 21 days so that's another 4 months, then I will have surgery and radiation so I am really not close to the end of this and may end up being the one to turn out the lights after everyone has moved on (ok, but seriously, this thread should go on and on, because I want to hear from every one of you how you are doing after all of this, in a few months, next year, two years, five years and so on!!!!!)
Hope your week is great! -Julie
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Whining. . . . It's not whining. We're not whining, not here. We are human beings who are going through what amounts to traumatic experiences, and we have every right in the world to share/vent/type/write/cry/scream/whine! And who better to share with than others who are having similar experiences?
I've been thinking about this very thing lately. And, though I get that it can feel like whining when we're talking to people who aren't experiencing what we are, this is a safe space. VENT AWAY, LADIES.
Chemo is hard core. It's nothing to scoff at, and it causes effects, in our bodies and minds and hearts, that are nearly impossible to explain to even the most well-meaning person who hasn't done chemo. That's why this board is so important; even in the darkest hours of the worst rounds of treatment, we have each other; we know someone is out there, and that she's listening.
Now, granted, I'm an egghead whose interests include how communities are formed and maintained. But, straight from the heart, I'll repeat what I (think I) said a while ago: not long ago, we were all strangers, living our lives, some of us on different continents. And now I consider so many of you to be my friends.
When all of us are done with chemo, we should meet on a beach somewhere and have a margarita together.
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We have to remember that these boards are part of our coping mechanism. Our friends and family try to support us is ways that know how, we often put on a brave face without truly indulging our real feelings. We fear being called weak, unrealistic and scared. Here on this board we are allowed our true feelings. Sharing them with new and dear friends who are walking the same walk daily. We are here to listen, love and offer support and not judge. Vent away....not everyday is good...our lives have been turned upside down and every facet has changed. People will look at us a year from now and will see us in our old selves. But in fact we will never be the same people that we were before each and every one of us was touched with Cancer. We need to find our new "Normal". That is what I find I am struggling with. I don't have much left in terms of treatment( said no to Rads, need my exchange surgery) but will be reminded every day what I went through. I will take things one day at a time. Try to be kinder and more caring of those around me. Try to volunteer in some sort of capacity to help other warriors get thru this terrible disease. Treasure each day, for it truly is a gift. I love all the support I have received from all of you. It truly has helped me get thru some very tough days.
We are doing this the only way we know how....with a little help from our friends. Laugh, cry, vent, swear, drink, eat red meat & bacon, dance. We only have one life....I want to try and LIVE that life again. Not just EXIST like I am doing now.
Hugs and love to you all still facing treatments. You got this! You can do this!0 -
Now I have one more super amazing, exciting thing to share with you gals. I am beyond happy! I have the best husband in the world...
MADONNA.......My DH has planned a trip for me and three of my girlfriends to fly to Nashville for a week to attend the Madonna concert in Jan. I was so upset when I could not see her in Oct due to my hospital stay. I was heartbroken. He knew how much I wanted to go so arranged this trip for me. Just yesterday I was feeling I needed to get away, have a holiday and now I am getting to go on one. I have no idea what the weather will be like down there in Jan but it will be a hell of a lot better than the weather up here in Central Canada. It will be a great time with me and my girlfriends who have helped carry me thru my whole cancer shitshow. Coming to appointments with me, holding me while I cried, listening to me babble, cooking meals for me, dragging me out of the house when I was close to insanity. It will just be a fun week. My DH even went to my Plastic Surgeons office to ensure that my exchange surgery will be booked after my concert. So that I will be healthy and in good shape to travel. Gave them strict instructions of when I was available. I could hardly sleep last night because I was so excited.
So Madonna is going to happen....Nashville here we come!0 -
I went to see the Occupational Health people at work yesterday (I work at a big public university in UK). They were fantastic. They confirmed lots of things raised in this forum by various of us - the near-total exhaustion that comes towards the end of chemo, the sadness of cancer, the difficulty and anxieties of re-engaging with 'work', the competing demands that women in particular have in mid-life (work and caring responsibilities, to which their own health has always come a distant third, etc).
Here's what they advised me. First, make a list of all the demands on your time and PRIORITISE. (I did that last night, and found that the thing I could 'drop' until my mojo returns is mentoring and supporting other people, which I do a lot of. It's time to say 'sorry, I can't meet you to talk about YOUR issues right now'). Second, build in REST PERIODS every day - 15-minute power-naps, whatever. Put them in the diary, protect them. Third, take a holiday. Okay, you've been sick for 4 months but that has been really hard work. You deserve a holiday (they didn't say where to get the money for this...).
The most useful thing the Occ Health nurse said was that she has seen a lot of women return to work after breast cancer and whilst it takes a long time, "almost everyone" gets back to some semblance of normality and it takes between a month and a year depending on all sorts of factors. This gave me much hope.
Right now I am at work, sitting in a quiet corner of the staff common room, wondering how I'm gong to give a speech at a cheese and wine party for someone else's book launch after work tonight. I guess if I fall asleep they will just have to wake me up, and if anyone notices I have no eyebrows or eyelashes, that's their problem.
So sorry to hear of continuing troubles, physical and emotional, from others in this thread. But inch by inch, we're getting there!
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I have a big day of scans tomorrow: skull/Brain MRI, mammogram, breast ultrasounds, full body bone scan, and echocardiogram Friday. I feel so normal most days that it's been easy to forget that I have stage IV cancer. I'm nervous, especially about the 6 cm. skull lesion that was found last time. I decided to have the scans and not get the results until after vacation next week. I think I will cry for days if anything has progressed. And I figure I will be just as happy to hear good news after vacation.
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Bluefrog...I think of you often..I hope and pray you get wonderful news from your scans. I think you are right - go enjoy your vacation! Deal with this when you get back and hopefully it will be the cherry on top of the already perfect sundae (your vacation).
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Bluefrog - I'll be thinking of you tomorrow and sending healing thoughts and wishes for good news. Also, wishing you a wonderful vacation!
Cheri - Although I'm doing better since switching to Taxol last Thursday, up until yesterday, I cried pretty much every day because I've felt so sorry for myself. I think when you feel so terrible physically, it is almost impossible for it not to bring you way down emotionally. Keep hanging in there. I felt so terrible, but the gravity of how bad it was is already starting to fade a tad even though it's only been a few days. You will feel better again and you won't feel so sad all the time. We are all in this together. Even though I wish none of us needed to be here, I'm so thankful to have others to share my experience with that truly understand.
Dee - Hurray for Madonna! What an awesome husband. So glad you have that to look forward to. We are planning a family trip after I am finished with treatment, probably late spring. I want to feel well enough and have a bit of hair. I should be done with rads by the end of March. I'm thinking something tropical and all inclusive.
Notdoneyet - Sorry to hear it is hitting so hard. I will be doing Taxol until Jan 7 and then rads. I'll be around and I hope our group keeps posting like some of the older groups I see. I feel like I know so many of you now.
Mom2aboy - Thank you! Yes, I am getting Emend. I don't know how I would have gotten through AC without it. The first few days on Taxol I still needed to supplement with Zofran and Ativan, but the last few days I've gotten by without anything extra. I'm thinking maybe the nausea was leftover from AC, rather than the Taxol. I hope so, anyway! I didn't know it was so expensive. So glad my insurance covers it.
Carolyn - Thinking of you and hoping you get the respite you need. Even people not going through what you are need respite once in a while. You are a hero for managing so long.
SDCA - Sending good thoughts for good pathology results!!!
MsBrompton - Hope all went well with your speech!
Kate - Beach and margarita sound like bliss. I think a meet up is a wonderful idea.
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Helpful insights MsBrompton- thankyou! you are this sweet, comforting voice always with sense:-)
lovelifeBR- Thank you for the hair compliment:-) I've been so self conscious! It fell out in a "reverse clown hair" pattern Mohawk thing, so I left it like that to be defiant.
Modanna!! I'm soooo jealous, and thrilled! We gonna see pics, right?
Kate, bring those Margaritas to Florida, I'll give you guys boat rides...in calm waters. Go to white sand Islands and look for shells. We'll all be walking slow with our sore, tired muscles but it would be fun. Grilled cheese to soak up those fruity drinks!
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No official results yet, but the radiology doctor said I'm having an excellent response to treatment based on the mammogram and ultrasound. Everything has shrunk. No tumors visible on mammogram in the left breast and the previous 4 cm. tumor on the right is virtually undetectable.
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Bluefrog76: Awesome news--So good to hear!
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That is great news, Bluefrog76. Enjoy your vacation!!
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Bluefrog , O my God!!! You have no idea how happy I'm for you!!! Very happy !!! And also it's so great that they told you before the vacation! Now you are REALY going to enjoy it. I REALY hope that this chemo is going to make disappear ALL cancer cells !!!!
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GREAT NEWS Bullfrog! I am cheering for you!! Go and enjoy your vacation!!!
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So so happy for you Bluefrog - you so deserve this good news and your story uplifts us all!
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Buefrog - Wonderful, wonderful news!!!!
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Bluefrog, that's fantastic news. Thanks for updating us! Sending good vibes your way, always.
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Bluefrog-that is the best news ever. So glad to know Chemo is doing what it supposed to. Enjoy your vacation with your family.0
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Great news Bullfrog! You are in my prayers:)
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Great news Bullfrog! You are in my prayers:)
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Relax on vacation now, Bullfrog! Yea..
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Bluefrog, that's amazing! I'm so happy for you!
I'm 75% of the way through chemo & have had a much better time since my MO cut my Taxotere by 20%. It was my birthday yesterday, and although I was tired, I made sure to walk for 30 minutes to my parents' house (in the warm rain, which was oddly comforting) and spend time with my family. My mom made me my favorite meal. I couldn't taste it, but it smelled delicious! She's promised me to make it again when I'm back to "normal."
Re: finding a new normal, I agree it's tough. So much of my time and energy has been focused on kicking cancer to the curb that I'm unsure how to return to regular life. I've started resuming most of my work tasks, and I'm trying to stop being an invalid. I'm taking back chores from my DH, even the unpleasant ones--I woke up this morning to find my dog had thrown up all over the rug, and I cleaned it up all by myself. Small steps!
Hugs to all of you & wishes for a healthy day!
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Can I make a confession? And truly it's an apology too. I have not been happy for anyone who has finished chemo so far. In fact, I have had mean thoughts. Just grumpy and jealous and bitter. It's not like me and I knew once I finally finished I would be happy for all of us. But until today, I just wasn't. (and don't even talk about people ringing that stupid bell every week. I do not want to ring that bell--mostly out guilt for how I feel when I hear it).
But today... My MO said today he thinks this cycle can be my last. He brought it up! The neuropathy is bad--really affecting my daily life at this point. He had me put on a gown and he checked both breasts manually--and he wants to do another MRI and confer with my BS. But... But he says the chemo has done its job, it shrunk the tumor completely away, and he thinks it is time to go ahead with surgery. He even cut out my weekly Abraxane just for today--I am pretty sure he wants me to get it for the next 2 weeks, but since I was getting the Carbo with my H and P today he felt I was covered.
So I apologize, and I am at a point where I can honestly say I am happy for everyone who has finished chemo. (And earlier than I expected since I still have to finish this cycle.)
My friend flew in from NY yesterday and came to see me at my infusion center today. I am so glad he is here. Half the time we revert back to silly 12/18-year-olds and just do life crazy. That helps.
So. Vacation, get-together. East coast? Mid-West? West Coast? Where do we all want to meet? I can't wait to hug your necks ladies!0 -
Musogirl, :-)
I think we all have those thoughts. This whole cancer experience makes us grumpy and bitter. I walk past smokers in the street and think "I hope you get cancer". I wouldn't think that normally, but I am so angry that I got cancer and they didn't.
And also, I think it's REALLY hard to be "happy for someone" when you're feeling so totally wretched yourself. You just don't have the emotional reserves. But then when you got a little bit of emotional mojo from some good personal news, you got straight onto this website and shared some kindness with us all, because you're really that kind of person!
It's great news that they've cut back your chemo - it sounds like you have had weathered enough side effects already.
I can however report that chemo brain continues post final chemo... (hoping not for too long)
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Musogirl-so glad you are done. I was lucky to not have had any Neuropathy from my Taxotere. I did ice my hands and feet during my infusions though.
I have actually felt a guilty since being done my chemo. I was fortunate that my treatment was only 4 infusions. There are so many of you that have a long road ahead of you. I have felt like a wimp when I see so many of you are continuing to work during your treatments. I don't know how you have managed to do that. I have had a few rough days this week. I keep telling myself, I am so glad I am done. It's the last time I have to feel like this. Then I feel guilty. My SE were well controlled. I did have a hospitalization mixed in there so it wasn't totally without hiccups. I can't wait for the day that all of us are done our treatments and enjoying life once again.
MsBrompton-It is funny you mention that about smokers. I have felt bitter and angry when I walk past them. I have lived a healthy lifestyle. I have always ate well, exercised regularly, never been overweight. Lived a pretty good life.....and I'm the one to get cancer. Doesn't seem fair, but I have found out life isn't fair. I got dealt the cards so it's how I play them that counts. Trying to stay positive in he midst of our stormy days is hard. You ladies have all helped me navigate the rough water in those storms.0 -
musosgirl, your honesty is refreshing. My infusion center doesn't have a bell, thank god. My partner and I were talking about making one of those "my last chemo" poster board things and taking a picture with the nurses, but . . . well, I don't want to make anyone feel bad. And I also have Herceptin for a year, so it's not completely accurate. Maybe we'll make the thing and take a picture at home, but I'm really hesitant to parade around the infusion room announcing that I'm done, when some people will NEVER be done, you know?
Anger waxes and wanes. It's part of the grief cycle. And, for as much as I think Kubler-Ross was full of it when she made it seemed like grief goes in phases and then just ends, she's right about anger and sadness and denial and how they all work together. I've been all over the place for months, emotionally speaking, and I finally feel like I'm leveling out into something like acceptance, but next week when I'm on steroids could be a different situation.
MsBrompton, I know what you mean about the smokers. I smoked for a while in my misguided youth, but then quit. . . Why? So I wouldn't get cancer. We see the results of that experiment. I sometimes get really irritated with myself for doing things like drinking too much for several years (thanks, grad school!), smoking, eating too many carbs, etc., but then I realize that, other than this BS cancer, I'm healthy as a horse. I think if it's in your cards, it's just in your cards. Cancer is a great and deep mystery, and I'm developing a lot of respect for it. I hate its guts, but I respect it, if that makes sense.
DeeRatz, no guilt! No! You did it. We're right there behind you. Guilt seems like part of surviving, in some weird way, and it's pretty messed up that it happens the way it does. . . I'm sure someone, somewhere, has written about it. That said, you're not a wimp just because you finished before some of the rest of us. You actually kick ass. And you're right: life isn't fair. My dad used to say, "life isn't fair, and whoever told you it was is a liar." I think he was right.
In other news, I've decided that I want another mastectomy, and I'm going to talk to my MO next week about when we can make that happen. In still other news, my hair is growing back. It's thin and weird and stands straight up on end, but it's there. I suppose I'm back to fuzzy duckling stage. I'm just happy because 1) it didn't completely die and 2) it holds my beanies on my bald head.
I just want to hug all of you. And then have a margarita on the beach. I like Birdysmom's idea to meet up in Florida and sail out into the sea. . . .
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DeeRatz, no guilt. I knew I would come around at some point. I think we all will at some point. But I am sensitive about announcing when I am done, and like Kate I will have Herceptin for a year so I don't really feel like I am done. But I do NOT want to ring that stupid bell!
I too get so mad at smokers. But I have family members who smoke--particularly my sister. Okay, and my brother. I get really mad when I have to walk past Stranger smokers to get in to a store or bank, etc.
So maybe things were going too well today. My youngest has a 101 fever. He doesn't feel well at all. In fact, my little night owl is in bed asleep. The pediatrician did not recommend taking him to Urgent Care, but he asked about my white blood cell count--and since I had an infusion today I had my current numbers handy! They had come up quite a bit from last week--my neutrophils too which is great since they were 1.1 last week! So I am quarantined from littlest guy, who is also my snuggle bug, and wearing a stupid mask. At home.
I will not get sick. I will not get sick. I will not get sick.
And my baby will be better for Halloween...0 -
Hello all! Lots of good news since I was last here! I have to start with a "YAY Bluefrog"!!! I think of you often and am so happy to hear you can relax a little on your vacation. If you wouldn't have had any news, it would still be nagging at you!
And what a fabulous surprise Deeratz!!! I hope you love Nashville and MADONNA!!
And musosgirl, an early release from chemo hell! Woohoo! I will also confess that I had to reach really deep to feel true joy for everyone finishing (last week, I am a happier girl this week!) Initial reaction was jealousy and more despair that my road is still feels way too long. But, as always, I was inspired by everyone else on this thread and did find that true happiness for everyone hitting the finish line! (Have I mentioned that I am fairly emotional now on the full spectrum?!) And I have no desire to ring a bell. A glass (bottle) of wine a few weeks after will be my bell!!!
I am also considering a trip SOMEWHERE! My husband's daughter was married in May, and my son got married in July. We had planned to take some time to ourselves in Sept by going to Maine. Needless to say, this plan fell through and don't you know that 3 different friends of mine took vacations to Maine!!! This is another area where my initial reaction is jealousy!
So, had #4 today and saw my MO finally. She decided to cut my carbo by 25%. If I don't feel better in 3 weeks, then she will cut the taxotere by 25%. We will see! I find it interesting how different every doctor is.
Well that's enough from me!!!! Wishing everyone SE-free days and nights!!! And, musosgirl, no sickness, and your little guy gets to trick or treat!
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Jen Pam Happy Birthday!!!! And many more to come!!!!
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Love it, Ruska!0
