Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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wrenn, you are a wonderful story teller. The elevator moment is so moving. Xo
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Warrior, I am also a college prof, and I taught 4 classes throughout my chemo last semester. When I realized I was going to need chemo (test results came in after my semester started), I made the decision to tell my students. I thought that since I would be losing my hair, since I didn't know how many times I might have to miss class, and since I didn't know if chemo brain would make me incoherent, that letting it go without explaining would be leaving the elephant in the room. I was SO glad I told the students. Their initial reactions were so heartwarming -- two classes broke into applause -- but their long term support through the whole semester was largely what kept me going. One class organized a surprise send off for my first chemo, even contacting all the other faculty in my program, my husband, and my son (via video) to participate. They all wore pink and had an inspirational quote to read for me, and they provided individual notes by various students at each chemo infusion. Another class surprised me with gift cards for dinner and a movie on a "good day," and I got lots of notes and hugs. Many have mothers or grandmothers or aunts who are BC survivors, and those success stories really buoyed me. I feel blessed to work with these young people who are so full of life.
I didn't really have much "chemo brain," but I struggled a little bit in keeping up with grading because of fatigue. At the end of the day I would fall asleep on the sofa at about 7:00. My Dean came through with some $ for me to get a GA, and she was a godsend. I only missed 5 days of class, and I arranged colleagues to cover those and revised my syllabi to work around the treatments, so I didn't have to take FMLA. I don't have tenure, and I teach on an annual contract. I am the breadwinner (and insurance subscriber) in our family, and I have a son in college on the other side of the country. It was imperative for my family that I keep working -- It was a struggle, more so than I anticipated, but I shared my situation with my entire medical team and with my Dean and Chair. Everyone worked to make it easier for me as much as they could. I am teaching an interterm class now, and will have three courses during Spring semester, so hoping that I can handle rads with that schedule.
As a sister educator, I wanted you to know that it can be done. PM me if you have further questions.
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TeamKim, your story makes me wish I could still work & what blessings your students & colleagues!
I am also the only breadwinner with a daughter in college & both husband & daughter covered under my plan.
I ended up taking FMLA because I worked three days a week with at- risk middle schoolers and two days a week with families often with emergencies & am part of a small team with very little flexibility.
(In the past, I taught classes part-time as an adjunct & once my daughter graduated & self-insured, I had hoped to return to teaching.)
I know it must be challenging to keep working, but I sometimes (often ) feel that sitting here with nothing but cancer to think about is more dangerous to the brain & spirit than the fatigue of working.
Thank goodness I still attend my poetry writing groups, as I am able. These poets have coordinated meals for us following my next chemo. One poet wrote a "response" poem to something I wrote about cancer. It was in that group, after she read her work, that I was first able to cry. One press let me know that whenever I finish a book of poems about this experience, if I do, they would want to see them. ( now if only poetry offered a paycheck and insurance. Lol)
Maybe what sustains us/ me are those moments of humanity & connection - whether at your place of worship or in an elevator or in front of a class or as a member of a group of poets revising their work .
Your conversations are giving me a new perspective. Xo
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I look for women with wigs or other head coverings and women who are midlife or older with very perky boobs. LOL
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The funny thing is before BC I always loved wigs. Wore them just got the fun of it. Now I wear only scarves. I have wigs but just won't wear them. I do look for women with head ties and wigs. I almost straightened one woman's wig but decided against it. I figured she would see it at some point. Life!!! This last chemo really has me totally wiped out.
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(((Wrenn)))...the story about your interaction with the young man in the elevator brought tears to my eyes. Sparing everyone here the gory details, I have been shocked (I really have) at the reaction (or lack thereof, I should say) from my family and my husband's family since the onset of my breast cancer. We've received just about ZERO support from family and friends. Not sure what it's about...discomfort, I guess. But I get tired of making excuses for people.
Cancer does change things by bringing out "more of who people are...the good, the bad, the ugly," so says my Oncology Social Worker at the hospital where I receive treatment.
I'm learning to rely MORE on the kindness of strangers (acquaintances who have reached out, my treatment team, people on this website) than friends and family. I truly have ZERO expectations of others at this point in time, and the abandonment I feel has been one of the hardest parts of this journey, so far. Like so many of us out here, I've ALWAYS been the caretaker and I've ALWAYS been there 10,000% for others...reliable, steadfast, caring, empathic, generous.
Oh well...hey, I've missed you 'cause I've not "seen" you on the November T&C board! Happy you are still here posting, as I've only read and not posted on this thread yet.
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I find the kindness of strangers overwhelming sometimes. Close friends have checked in with me and visited and some just disappeared.
I can go into all the reasons for their disappearances but quite frankly it does not matter.
This diagnosis has helped me separate the wheat from the chaff which is always a good thing!
The other thing I learned is people need to be given a task to do. I have asked people to pick up oranges, pick up hair dye. Etc.
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I feel for those who have had "friends" disappear since their diagnosis. I may be the odd one here because I told only a select few. When asked to tell them what I needed or wanted, I told them that I may not need them at that very moment but if I do, I will let them know how they can help me. They would text me or call me periodically and one of them took me out to breakfast/lunch several times. I was more comforted with knowing that they were there for me than anything else. I know they were expecting me to need them to take me places, get things for me, keep me company , bring me food but the truth is... I was fine. I knew that they had not gone through this situation before and I had no expectations of what they would do or how they would react. I also recognized that each of my friends had families of their own that needed their attention more than I did. So I never have felt abandoned or alone since I knew they cared for me and willing to help me anytime.
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Melrose: Interesting - I've done the same. I also only told a select few people and let them know I'd call if I needed help. I also warned them that they could leave a message but I would have my phones turned off if I was sleeping no matter what time of day, so email was better. I did send email updates after chemo since a couple of family members across the country seemed interested. But like you - I've only had to call for a ride twice when I had to take Xanax for PET/CT. Otherwise I've driven myself to every chemo & appointment & test and plan to do the same w/radiation.
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Thank you everyone with your kind responses and words. Melrose...you never cease to amaze me and you clearly are a role model for me. I'm afraid, though that you are much more-well adjusted and stronger than me-smile.
My husband, John has been bearing the brunt of the fall-out. The following 48-hours to 10-14 days for me post-chemo and Neulasta are the hardest...but I feel I'm pretty stoic. Mentally, I do not feel like am coping well.
We literally "have" no one here in Michigan but a call or an email from family back East would be nice...ditto for a few "close" friends, so I thought. My sister has been the biggest heartache...but why am I surprised??? That is the question. More of the same.
The social worker at the Center talks about "putting people into piles" and "clearing out people clutter." That is, recognizing who and what matter most (Pile #1), which relationships are "of middle importance (Pile #2)," and which relationships should simply be left alone...no longer worth any emotional or physical energy (Pile #3).
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I've always lived by the assumption that everything a person says and does is about his/herself and has nothing to do with me. When people don't call, when they say stupid things, when they hide...it is not about us. BC is terrifying and many people cannot face it. I was surprised when a close friend did not call so I picked up the phone and called her. She was so glad to hear from me and said that she was afraid to call as she worried she would interrupt something. Next week when I start chemo she will be my support person. She is so happy that I picked her. She is honored that I trust her. My friend did not call me. I called her. I'm glad I did.
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Tonilee.... such sweet words.... you are way too kind to me. Please be easy on yourself and your thoughts about who you are and feeling a little insecure about people and things. Having a serious illness throws one's life and world out of kilter but yet it is how one reacts and deals with that event that really matters. This journey is not travelled solely by you; there are many who travel with you who find this journey new and are just as unsure of the path as you are. You may need to open that line of communication with friends and family whether they live close by or far away. It is that reaching out that will make you feel that you are trying to get that communication started. I emailed periodic updates and photos of myself to my family that don't live here so they would at least know that I was doing well. By doing this, I was able to control what they knew and how much they knew. When I was first diagnosed, I didn't want to bombarded with numerous phone calls asking me the same questions about my medical status. I was doing my best just to accept my situation and the challenge set before me. I know that they love me and care for me and want to do anything to help me but that is all I really needed. So please no self judgments..... no self criticisms..... just love yourself and those around you everyday.....
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audra67 It is tough trying to
decide to change MO. The group on this
board is great for advice. I will be making the change after the last chemo
session. I can’t spend 10 years on hormonal therapy if someone doesn’t listen
to his or her patients. Also, type of
your questions and ask to record the conversations. I’m glad thing will work
out for you in the long run.As for chemo brain
the first treatment or so I would be talking and then just stop. I seem to have
gotten better with each treatment or I just keep my mouth shut while talking.At the last chemo I
meet someone and we were talking about the friends who disappear. She told me to think of it as friends I
haven’t lost, but friends who are just lost with life. I cannot control their actions, but
mine. I find that strangers are so kind
in times of these.I hope most of you are doing well and the leg pains go away.
My third chemo I got
the flu, the last four days I have had fever 100+ and they can’t get my blood
at the local hospital because I either have seizure or pass out. My oncologist
told them I would be okay until Thursday. So Thursday I get my blood drawn to
see if I get to be at home in bed or the hospital. In the meantime I have had to cancel teaching
classes until after the last chemo.
Hubby is upset with me, because I’m scaring him at night with the
breathing issues. Be thankful you guys
live near a big city. I have learned my
lesson that even if you want to have a “normal” life and still work and life
during treatments, you never know what comes with each chemo. I’m pretty upset I spend all my time now in
bed rest, but I guess this is temporary.Another note: after
your last chemo how many weeks is it before 1) a reexision 2) you start
radiation? -
FDM- Usually 3-4 week period before starting rads after one finishes chemo. One usually will have a post chemo visit with her MO and also may see the RO to discuss the rads treatment plan. As for the rads, one has a simulation session before starting the actual rads treatment so that one is marked/tattoed and it is determined how to line the rads patient up in the right position so the rads are aimed at the right location. I don't know about the waiting period for a re excision. I would think it is probably the same---- 3 to 4 weeks post final chemo to allow the body a chance to recover from the final chemo.
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So sorry that some of you have not had much support... but at the same time it is a comfort to me that I'm not the only one who experienced this. When I was first diagnosed, my main thought was, "Well, at least I have the kind of friends who will go through this with me & really support me." They were super close, sensitive, responsive friends & I felt certain they would stay by my side. They didn't. It hurt so much & still hurts now, several months after I've finished treatment. They were like family to me and it's hard to accept that they were not there for me. And blood family, too, has also ignored everything I went through, never even sent a card or called my husband or asked how I was feeling. It all adds to the surreal feeling, that this was all a dream, even the people closest to me don't acknowledge it. I am still friends with a few of them but at more of a distance now. None of them are my enemies but I don't put any effort into those friendships anymore really.
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Is anyone having problems with extremely delicate skin as a side effect? I went to work on Monday (day 8) and after a short day of walking around managed to develop enough hot spots on my feet that now I can't wear shoes. Other places seem to have the skin test it rash easily and my hands are very sensitive. I never thought walking in shoes would create this much damage to the skin.
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Quirkygirl -- you may have hand foot syndrome ( Link: http://www.breastcancer.org/treatment/side_effects/hand_foot_synd and http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspx) I realize that that the info says that our chemo regimen isn't one that typically gives hand foot syndrome; however there are some helpful tips as to what you can do. You may want to call your onco's office and have a chat about this. You just want to minimize any possibility of getting an infection from those hot spots...... Keep us posted.
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thanks MelroseMelrose!!!
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Well, so much for minimal SE's! I had chemo #3 on 12/30, and this week developed a very severe allergic reaction. MO said it was the worst she has seen. Rash, hives, extreme itching, swelling, throat starting to close
. Can't have taxotere again b/c onc said it would most likely put me into anaphylactic shock...and as she said yesterday "I am trying cure you not kill you!" I was sobbing in her office yesterday from the pain and telling her how scared I was and she was apologizing to me saying "I did this to you..." So sweet. Anyhow, I will have abraxane instead of taxotere for the 4th chemo. Scary bc we don't know the effectiveness of not having 4 treatments......sigh.....but I have no choice as the reaction was so severe. Had a shot of steroids in my muscle yesterday and am on heavy dose if oral steroids. Swelling is slowly going down.....but still super itchy......Really brings to life a something my aunt who battled colon cancer said, "if the cancer doesn't kill me the cure surely will!"
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Hi Sisters. Having BC has definitely highlighted a sense of aloneness for me, at times. Usually, just during chemo, I have this deep sense of vulnerability and being really alone, even with my husband by me. He does bear the brunt of my physical and emotional side effects. I absolutely agree and do live by the sense that how others respond to me has little to do with me and more about their own emotions and needs & what I call the "invisible suitcase" of family history each of us lug with us. (I sure do) People will say that I should call them anytime or "Do I need anything?" and I have finally figured out that my answer better be concrete, such as picking something up at the market or I have no clue what to say. Still, I guess I start to feel frustrated because my only brother lives 6 hours away and I know that even my nearby beloved cousin has her hands filled with working, school, and raising kids. I guess I have been surprised by "good" friends who seem to have withdrawn a lot. I will still love them, as friends, but am aware that each friend has a place in my life and gives me different things, but are limited. BC has definitely opened my eyes to human limitations. I guess I feel sad to learn what I have learned about friends and BC, but also I know this realization will help me as I age. On the other hand, I have had major wonderful surprises. Strangers - a friend of a friend who had cancer - will telephone to support me. Or someone shows up with a chicken stew, someone I see at monthly meetings but not consistently. Or a secretary at my office will send me a note with her cell phone, and knowing her, means it. This makes me hopeful. It shows me that wherever I am, wherever I eventually move for instance, I can probably find a community. This is the MOST complicated emotional experience I have ever had. I feel simultaneously lonely and hopeful. I am telling you about my experience because I am not sure I can ever really give "advice" or know how it is to be in anyone's else's shoes. Maybe, something I am living will resonate with you dear hearts. Love (and surprising myself here I mean that) momat927
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virginia, I hope you are doing better soon! Had you had any allergic reaction before this? Did you have steroids before TX? So glad your MO is on top of it!
QG, I hope you get your SE's resolved soon also!
wow, this BC and SE's are so unpredictable.
((HUGS))
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I guess I have so few friends that the ones I have are the cream of the crop! I do experience loneliness now and then, but part of that is my own doing, I know. My friends have been supportive so far. I think each of our friends has a special place and helps us in different ways. Sometimes people just don't know what to do, so for fear of doing the wrong thing, they do nothing.
I agree momat, this is truly an emotional and mental roller coaster.
Has anyone joined a support group? What has your experience been? I was thinking of it when I am almost done with TX.
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VirginiaNJ- Yikes..... Hope those allergic reactions to the Taxotere go down asap!!!! That's right.... no more Taxotere for you!!!!! Hang in there!!!!
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keepthefaith- Believe it or not, you are giving advice and comfort to those here. We know of the mixed emotions and feelings we may have at times. There is no instruction manual that was given to us to get through tough times and so we just do our best. You are doing great.... and remember you are not alone here!!! HUGS!!!!
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i just contacted the cancer association for local support groups. Often being alone is also my own doing. I do have a bit of a hermit gene, but BC is changing me somewhat. I am deciding between individual therapy specific to BC or a group. I too would love to hear others' experiences
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momat927...your last post so closely resonated with me, as I can relate to so much of what you are feeling, I really can. It's hard to know where to "properly" post such deep feeling and emotions, as I see out here on bco, people's tolerances, ways of coping with bc and replies vary so greatly. And I certainly do not want to hurt, isolate or offend anyone out here. It's the last thing any of us need right now.
But I want to tell you "I really understand" and you are not alone.
One of my "fears" has been burdening others with my woes, as I've always been the caretaker and giver of those around me. I have been extremely independent my entire life and I am 56 yrs old...some of your words tell me I may be a bit older than you but I want you to know you are not alone and I very much relate to what you are saying.
Without becoming too publically personal, I have been shocked and disappointed by the way in which many people with whom I thought I was close have backed away from me since my breast cancer diagnosis, especially my one and only sibling, my sister. I understand that people bring their own emotional baggage, including their strengths with them to most situations. And I want to believe most people mean well and are good at the core of their souls.
So, I guess I'm surprised at how people have responded by backing off after the initial outpouring of emotion ('cause people thought I was [probably] gonna die in a few months...I hope not)! So, I was (and am) surprised...but not quite shocked. I should have seen it coming. Perhaps breast cancer has helped open my eyes to the complexity and oftentimes very one-sided nature of family relations and/or close friendships. Alternately, despite being guarded my entire life, I am choosing to accept the kindness of strangers in lieu of my expectation of others.
The Oncologist Social Worker with whom I see at the Cancer Center at my hospital says, "breast cancer doesn't 'change people, per se, barring the person with cancer...but even then...like any other stressful or traumatic moment in time, it simply brings out more of who each person is...the good, the bad, the ugly...Magical Changes and Pink Ribbons are something society has placed on the face of cancer to make it more palatable for everyone to accept." Very wise words, I think...this woman is in her late 50s and has been an Oncology Social Worker her entire life. Like me, she has even worked in Hospice (but I am not a social worker...I am a Nurse Practitioner-smile).
Unlike you, I have not worked regularly since leaving New York City for Michigan in 2006. My life here has been quite isolated and lonely 'cause I primarily teach nursing at a local college (Adjunct Faculty) whenever they need me...it goes in spurts. Right now, I do not feel capable of working. But look at the gesture of kindness (as I know you do) from your secretary. A little note like that, an EMAIL from someone...those things would mean the world to me.
Not looking for much...just little gestures that we are in the prayers and minds of others. Oh well...go figure.
Frankly, I learned a while back that trying to understand what motivates others is a colossal waste of time.
And the kindness of my Cancer Treatment team, the kennel where we boarded our crazy feral cat and maniacal puppy when we traveled, our veterinarians, our pet sitter...these folks have been kinder towards me than people I've known my entire life...like my family.
One lesson my very brief bc journey has taught me is to NEVER JUDGE the way in which anyone goes through this journey. Whatever works for someone is what they must do, INCLUDING ME & YOU!
If Pink Ribbons and kicking cancer's a$$ and Susan Komen Races For The Cure are where someone is at, I admire them for that...but it isn't me and it simply isn't where I am at...doubt I will ever be.
If you'd like, PLEASE FEEL FREE TO add me as a friend and PM me anytime!
You are not alone...I can truly empathize with you!
Hugs,
Toni Lee Fiore
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momat927...As an aside, I too contacted the American Cancer Society (I think) and requested a Breast Cancer Coach, which initially was very helpful. The Society attempts to line you up with a woman, who will call a few times to "coach you" through the upcoming battles. My coach is a very lovely lady but since she became so busy with her two teenagers returning home for the holidays, we've lost touch a bit. It's my fault and I've got to reach out. She's more of a "texter," whereas I am not...do not even have a texting plan on my iPhone-lolol.
Like the info you received, I'm reserving the "group" until I'm feeling better and able to make a weekly, "every Tuesday night" commitment to the group, which is required. Right now, given the way I struggle with T&C plus Neulasta, I cannot make a weekly Tuesday commitment. Just so you know, this group in Ann Arbor Michigan is professionally facilitated (actually, my social worker, Debbie from the hospital runs it with one or two others). And, the weekly commitment is required because the mentors believe "cancer people face enough loss and rejection...they don't want people coming in and out of the group at whim."
I agree with this, thus I'm waiting 'til I see how I do with Radiation Therapy come late Spring 2014.
I have found both the Individual and occasional Marital Sessions with Debbie to be a God-Send. She's the only therapist I've ever met (barring my professional time spent at Hospice) who is SPECIFICALLY trained to work with oncology folks and their unique issues.
I like her a lot. Best wishes.
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Virginia, Oh my! Glad you are okay and your MO recognized it! TeamKim had the same reaction!
QGirl, if it is not one thing it is another isn't it? I hope they figure that out for you!
((Momat))) hugs, cancer can be lonely sometimes. My friends seem to know institutionally when to call and text me, so I have been fine. I have needed a drive a few times, and just sent an email out to friends and got help. I also had meals delivered by the community I worked in for 12 weeks.
I am also in therapy so that has been great for me. I took off work as this whole chemo reconstruction thing has been exhausting and I have both cancer and disability insurance so that has been good.
Today is the first day after chemo I can walk around a little, I am so fatigued! This board and the ladies here have bee a lifesaver for me!!!
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Toni, thank you so much for your openness & kind words. I am, in fact, 65, but have a college age child & pretend I am young. LOL. I also do remember that being an adjunct felt isolating, even at best. I taught nursing students taking bio-psychology classes, by the way- favorite students.
I am grateful for your response because I was just beating myself up for saying stupid things here- Hence hermit gene.
. I know, intellectually, nothing any of us say here is. "Stupid" but as said here many times by many of us , BC seems to have me questioning emotionally.
So, where is the line between how we feel emotionally and our physical side effects? Not easy to know
I guess I feel there is a limit, for me, about what can and should be discussed here and that is the reason for seeking outside supports, like groups or social workers or therapy . None of us are here as professionals. We are just giving and getting support . On the other hand, i am deeply grateful that so many people are frank about fears, confusion, and vulnerability inherent to this cancer process.
Here is to an easy ride. Amy
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Virginia...meant to post earlier that I am sorry to hear about your horrible side effects this round! I mentioned on another thread that after speaking with an On-Call MO from my group a weekend or so back (about SE's I was experiencing 10-days post T&C), she told me something I will not soon forget...something I'd like to share with you.
She said, "In the face of Adriamycin...the 'red devil," which is a very tough chemo drug, people tend to underestimate Taxotere & Cytoxan...especially Taxotere...many MOs make patients think it's gonna be a walk in the park...and it may be for those versus Adriamycin...but it is a tough, brutal, POTENT chemotherapy...understand so and be gentle on yourself."
I've followed your SEs with T&C...I hope you do better with abraxane...you've had three T&C treatments. I know I do not trust many and it has taken me a while to believe that my Treatment Team (especially my MO) knows what he is doing-lolol. They seem to get the intellectual part of it all, if not the emotional-smile.
I think you'll be okay switching to abraxane at this point. The other stuff seems too toxic for you.
Keep us posted.
Hugs,
Toni Lee
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