Starting Chemo, November 2013 Group
Comments
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Can we get on disability or social security? I am asking my doctor on Monday, but has anyone tried? I am on FMLA now, but I don't know if I want to go back to work, it was pretty stressfull.
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Oh one more thing, I have, in addition to a 13 1/2 yr old daughter, 2 sons. One is 27 and the other is 30. They both came home for Christmas. Christmas Eve we went to church and then out to dinner and we decided to stay in on Christmas. Christmas morning we are getting ready to open our presents, they take off their Santa hats and revealed freshly shaved heads!!! They said if you have to be bald for Christmas, so will we! I was crying my eyes out! So unexpected, but truly special! LOVE my kids!!
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Lissy, your family is beautiful!
I'm on disability through the insurance I paid into with my school district. It only covers 60%, but it's making ends meet for now. I didn't work enough hours in the last year to qualify for FMLA. There are some days I feel good enough to be bored to tears and wish I were at work, but it definitely is the right thing for me to take this time off. I have a sort of secret goal, though, of going back to work in April after I'm done with radiation. We'll see; I might just wait until then new school year in August.
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Near Dallas, going to Texas Oncology..
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Today I actually made it to the GBC!
I am sitting in it as I am typing this. The chemo unit is getting quieter by the minute as people are leaving earlier due to New Years Eve.
I saw my MO earlier. She asked how I was doing. I said that other than the pain around the mastectomy scar I felt OK. She asked me if I I wanted to have the chemo today or wait another week. I said I leave it up her to decide. She said to go ahead with the treatment today. God willing, it will be fine and for the best. I already had to deal with quite a delay in my treatment.
So I am having the red devil cocktail instead of some red wine, but at least the resemblance is there. Epirubicin does look like some Italian rose wine. Wishful thinking!
I am trying to relax listening to some lovely music by Arcangelo Corelli. Oh, another Italian connection!
I want to dedicate each treatment that I will have to a special person.
I didn't dedicate my #1 chemo, but deep down I thought I was doing it for myself.
Now, I am dedicating chemo #2 to my son.
Everybody is gone now. I am the only one left in this unit. In fact, I am starting to like it around here.
It's so nice and quiet. Got to enjoy every moment of it. Wish everyone a Happy New Year that will bring us health and happines!
We shall overcome some day!
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Happy New Year Ladies!!!!
I actually documented my hair growth from my first go round....if I get some energy tomorrow, I will post a few to give u all an idea- I took pictures once a month....
Bec- all things considered I feel good. Just super tired. Can't keep my eyes open. Have a rash on my arms and was able to peek in and see the onc when I was getting my Neulasta shot. She just said cortisone cream. Also am burping lol so she said gasx.
I also ran into the oncologist that treated my mother 33 years ago! I think I made him feel bad when I showed him my bald head and told him I was a reccurrence.....but he also said I looked wonderful lol
Lissy - beautiful pic.
Anyhow- no energy for more posting but ever so grateful for all of you ladies!!! Here's hoping for minimal SE's for all of us.....
Hugs!
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The medication is starting to do its magic, as I am beginning to feel dizzy, nauseous, headachy, with a prickly feeling around my heart and getting throbbing sensation in my ears.
Holyyyyyy crow! It hit me like a train!
Lissy: I love the picture of your daughter! Very cute! I think that your sons must love you very much, shaving their heads to show support.
My hubby also buzzed his hair to the same length as mine in solidarity. I really appreciate that.
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Lissy, it is nice that your family is so supportive of you.
Ellen, congratulations on finishing your last chemo!
Audra, my 19 year old daughter gave us a terribly hard time a few years back. Contributing to all my other stressors. It's all a matter of maturity. Some just don't mature until their 20s and that is so true. I see it every day as a high school teacher. Just stay supportive. She will come around.
Also, I asked my MO about the menopause thing. He said if I don't get my period for one whole year after treatment, I will be considered in menopause and he will put me on arimidex. So I will be on tamoxifen for at least a year. This is unless I don't get my ovaries out. I really want to get them out. I was going to speak to. Y regular guns about this. Would an oncologist/gyro be better?
Bec, I am going to try to get back to work when radiation starts, too. If I am not going to feel like crap, I will just be bored and I am using accumulated sick days. I don't want to run out. Also, I need to get my students prepared for their AP exams. If I even remember how to do math.
Happy new year, everyone.
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Feeling better tonight! For now, at least. That headache was one of the worst I've ever had and I'd go to sleep with it and I'd wake up with it.
Finally decided to *attack* it, so last night I took half of a Norco, then a while later took the other half, and today, when I woke up with the headache yet AGAIN, I took a whole one. Proceeded to sleep (soundly!) for about 5 hours. Woke up with no headache and in the mood to get a shower. Feeling a little shaky/fainty from the Norco itself (which is typical for me) but oh man I feel so much better. If that headache comes back, I know exactly what to do now.
My mom posted on Facebook a little while ago and she said something like "I started to post how 2013 hadn't been a very good year for our family and how I hoped that 2014 would be better, but then I realized that we were never cold, we were never hungry, we never needed medical care that we could not get, and the sicknesses we had happened in an era when there is good medicine to treat them and make us well again. We've had shelter, and each other, and all in all, 2013 has been a DAMN GOOD YEAR."
I love my mom.
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Lisa137-
What a great mom! WOW you are blessed!
Lissy- love the photos and you are amazing to do an all nighter! Your sons shaved heads are darling too!
smrlvr- thanks for encouragement on our daughter, she has been HUGE strain on us all for last 4 or 5 years...
Bec- I felt the same way, I exercise and eat wonderfully and thought that would do it..wrong-o ....I was very upset...unfair!
Amazon-
Hooray for you and I hope you have minimal side effects...:)
Love you all!
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This was the oncologist/gynecologist - Dr. Kehoe at UT Southwestern. I LOVE her. She's my age (40) and very upbeat. She did her residency at Sloane Kettering in NYC.
She was recommended to me when I asked another girl on our site who she sees....she 'highly recommends her' and I'm going to see her in February myself!!!
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Yay for Sloan Kettering!!! That's where I had all of my surgeries....
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Thanks to all who sent good wishes for my last chemo infusion today. If felt wonderful to walk out, saying to the staff "You are really nice people, but I am really glad I won't be seeing you again." (at least not anytime soon). Round 3 hit me like a locomotive, even on the day of chemo, but I am actually feeling fine tonight. Just a little tired from a long day; the commute alone is 4 hours.
I saw my radiation oncologist yesterday, the same doc who treated me back in 2006, someone I really like though I don't like the hospital he works at. But it is local and practical for daily treatments.
The schedule is that I have a simulation on 1/27, then four weeks of radiation starting the first week of February. He explained that this is the newish 3-week protocol as supported by Canadian and British research that is replacing the 6 week protocol for early stage cancers like mine. He remembered that I am a numbers and research jock, so he gave me a full explanation that the 6 week protocol (which I had last time) is 5 weeks of regular radiation, then a series of 6 "booster" doses. Unfortunately the research for the 3-week protocol only compared outcomes to the 5 week protocol, and never considered the boosters. In the 5 week protocol, the extra week of boosters have been shown to improve outcomes by 10% -- pretty significant. There is research underway to explore this, but in the meantime he feels the boosters are very important.
So, even though I was counting on 3 weeks, I agreed to 4 weeks. I was also hoping to start the radiation a week or two earlier but the doc says he wants to make sure that all chemo is completely out of my system before he starts radiation. Hard to argue against that. So instead of finishing everything by Valentines Day, it'll be the end of February/beginning of March if all goes well.
Last time, the 6 weeks of radiation didn't affect me much. I had an early morning appointment, and went to work from there -- never missed a day of work, though I did sleep through a couple of weekends. My skin held up well, though by the end it was on the verge of developing blisters (kind of the common sunburn effect), but I dodged that bullet. I felt well enough that on the day of my last treatment, I drove to Denver and flew to Boston to help my sister and brother clear out my mother's house for the weekend (she had moved to assisted living).
Not sure whether I will be able to stand up as well this time, having also been through the rigors of chemo, but I am optimistic. I just so badly want my life back, having been totally diverted for 8 months first by my husband's illness and then by my own. I am so ready to get back to life!
Happy New Year to all! -- Ellen
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Happy New Year ladies! I feel honored and blessed to know you. This is the year we get our bodies back!!!
Ellen - the RO I saw at Hopkins recommends "the Canadian plan" of a shorter course. So that's what I'll be doing in March or April. Seems to be the new standard. I have to wait four weeks after chemo before I can start.
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quiirky girl after chemo I have to wait for four weeks before I start radiation. I still have three chemos to do. I'll be done chemo the end of February. I'm halfways done chemo..
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Ellen: it was nice you finished chemo. Get well during the time you're not using anything else. I'm still sorta tied so I can only respond to one post at a time.
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Happy New Years everyone. Tomorrow I start Taxol and Herceptin. I have 10 more months of chemo and completion of my reconstruction to look forward to this year. No radiation for me.
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Happy New Year everyone!! Today is the day to make resolutions, but since they don't usually last, I'm not going to bother. What I am going to do is promise myself that I will TRY to do better. You know, the usual, eat better, try to be better at staying in touch with people, trying not to get as peeved at stupid people (believe me, when you work in retail you see a lot of stupid). Maybe it'll work, maybe it won't, but I am going to try.
I'm going back to work on the 13th. I need to work 30 days so that my disability benefits rolls to the new year's. Since I have no idea how the taxotere by it's self will affect me, I need to try to get the 30 days in before I start it after the A/C. I'm doing 3 rounds of it by itself. My boss is an angel. Instead of actually putting me on the schedule, she's just going to account for my hours in her budget and let me work when I'm up to it. Since she just got another payroll budget cut, it's going to be a hardship for her, but she's willing to deal with that. Bless her.
Ellen, hopefully having the time off before radiation will let the poison clear out of your system enough that the radiation won't be any harder than the last time. What's a simulation? And is that a 4 hour commute one way or round trip? Either way, holy cow!! Does anyone know if there's a wait period between chemo and surgery (for those of us doing this backwards, chemo then surgery)?
Audra, Bec, maybe the eating right and getting lots of exercise will help with the recovery. It can't hurt to be in better shape to start with.
Lisa, your mom sounds like a peach. I had a headache Sunday. Bad to the point of making me throw up. Not sure I can blame it on the chemo since it was 11 days out, but I haven't one like that for many years. Whatever caused it, I certainly hope it doesn't make a return appearance, for either of us.
Bec, I still have 8-9 months of treatment also, depending on what type of surgery I opt to have. It used to seem overwhelming to think of that, but I've finally gotten over that. It is what it is, and at least we have the resources to have this type of treatments. Just a little bummed because we were going to have a 20 year vow renewal next August, white dress, tuxes and all. But I'm not sure how I can get a wedding gown, and get it fitted, if I don't even know if I'll have boobs then. But, again, it is what it is. I'll figure it out somehow.
Again, Happy New year to all. And may today be a good one for us all.
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Happy New Year! Hoping 2014 treats us way better than 2013 did!
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Hi folks -- It looks like I will be among the first in this group to move into radiation, so I thought I would post information about radiation for those that follow. Those who've had radiation before or won't be getting radiation, feel free to skip to the next post when I write. Hopefully what I write will be calming, reducing some of the fear of the unknown for those who are new to radiation. Caveat: your results may vary with different providers!
First for those who don't know, each of my daily radiation sessions took about 15 minutes. Add a few minute for changing into a gown or jacket, and waiting if they are not running on time, but basically a very small part of the day. Hopefully your provider can help work around work or children's school schedules. I usually shoot for a morning appointment as fatigue is more likely to kick in later in the day, and I need to drive myself. Last time around, I had a 7:45 AM appointment and was typically in my office by 8:15, or 8:30 at the latest.
To answer Wally's question about the simluation:
Radiation is all about ensuring that you are positioned on the table each day in exactly the same spot so that the precisely calculated radiation rays hit the right spot -- and miss important things like the heart if the radiation is on the left, and the lungs in both cases.
So, at least where I go, one of the things they do is apply 3 tiny, tiny tattoos (just like the mark if you take a ball point pen and make a tiny dot on the page). One is right at the top between my breasts, the other two are one either side of my stomach, almost at my waist. The radiation room is equipped with laser lights in the wall, and they line the laser lights up on those tattoos each day in order to position you correctly. I think they do the tattoos as part of the simulation. I was delighted to discover we can probably use my old tattoos, don't have to get more.
(As an aside, when I last had cancer and got the tattoos, I was working at the DA's office with a reformed ex-gang member who had been in prison for 8-10 years but was helping us with community presentations to youth on not joining gangs. He was covered in gang tattoos that he was now trying to get covered, and in particular had three tattoos of tears at the corner of his eye -- those are supposed to represent people he killed. Anyway, every time I saw him I had to fight the temptation to say "I have tattoos too!" Just made me laugh.)
Back to the simulation: If I recall correctly, they also make a body mold/cast of your torso. Kind of funny to see a whole row of these hanging in the corner of the room! These casts are rarely used, but if they start having difficulty positioning you, they will try fitting the body cast over you to see whether there have been significant body changes (e.g. swelling going down, weight loss or gain) that mean they need to re-calibrate the radiation settings.
Beyond that I think they do a dry-run of the radiation treatment, without any actual radiation, just to make sure that everything is all ready to go. I think they are doing lots of calculations behind the scenes. My doc asked that I do the simulation several days before the scheduled treatments so that he gets a chance to closely review everything.
The simulation appointment is scheduled for an hour or less.
I hope this is helpful. -- Ellen
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Ellen, that is VERY helpful. I've been dreading radiation. even though it's still several months away for me, but now thanks to your post, I actually do feel much better about it. Thank you!
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Ladies heading to Rads....... Although I did not have rads, I had several gals recommend "Miaderm Radition Cream". Here is the link for it http://miaderm.com/ and a link to purchase it on Amazon http://www.amazon.com/Miaderm-Cancer-Radiation-Treatment-Relief/dp/B005CZL9HQ . (FYI: I have no affiliation with the company who makes the Miaderm cream or the Amazon seller.) My gal pals who had rads tell me that this cream works great and it had been recommended by a radiation nurse. My friends also recommended Aquaphor to also help one's skin. Yes.... I had prepared myself for rads since my onco told me that I would probably have them during one of my initial appointments. After my UMX and after my 4th round of 6 rounds of Cytoxan/Taxotere chemo regimen, the cancer center tumor board reviewed my case and recommended no rads for me. However, I like, everyone else here who is going to have rads, had all of the nervousness and anxiety about rads. I did read the Radiation Therapy section of the main BCO.org website which helped me a lot get a little more comfortable with having rads. http://www.breastcancer.org/treatment/radiation.
Wishing everyone a great 2014!!! Much peace and calm to each of you as you move forward.
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There is a winter 2013/2014 rads thread on this board. Even though I am not having rads until march, I have been reading this thread. It is very helpful in knowing what to expect. I am sorry, but if don't know how to post a link using my iPad or,I would do it .
I hope you all have an enjoyable New Year's Day. I plan on spending the day in bed,
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I used the Aquaphor during my rads and it was great.....never had to buy it, the hospital gave me tons of little samples. The sensitive skin does not come immediately - it's cumulative. So, you can see what your rad team recommends as well (maybe you will be lucky and get the freebies too!!).
I had 2 pinpoint tattoos - one between my breasts and one on the side. I'm guessing placement of the tattoos has much to do with the location of the cancer....
As Ellen said, it's super quick once they set you up....takes more time to undress and dress than get the rads!!!
Rads are WAY easier than chemo........as it happened last time I did rads before chemo.....but you gals that have to do it after.....you got this!!!!
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Okay, if we are going to talk skin creams, I have to tell a funny story. And BTW, my RO oncologist prescribed a cream, something not over the counter, but I can't remember the name. The effects of radiation are much like a sunburn, and you just don't want to get to the point that it blisters and causes infections. Hence the creams etc.
Anyway, we made a little ritual where every night at bedtime, my husband applied the cream. I have discovered as a caregiver that it helps to have a role in the care, and to see exactly what is going on. Plus, he could see the bottom of my breast better than I could.
So one night, immediately as he made the first swath, we both knew something was different. Turns out, I kept the tube of cream on my bathroom vanity county next to my toothpaste -- and yep, he had grabbed the toothpaste.
We had a good laugh, and decided it was much, much better to have a little toothpaste on my boob than to start brushing my teeth with the skin cream!
Ellen
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ellen: Thanks for the info about radiation. I knew about the tattoos, but I didn't know that they were permanent. For some reason I thought they would be temporary like henna tattoos. Live and learn. I'm glad to hear that they are very tiny. Perhaps like a small birthmark.
I had my second chemo yesterday, so I am 1/3 done! Yeeey! So my rads are still quite a ways down the road.
Had a pretty rough night with SEVERE nausea that felt like having a big heavy rock in my stomach. I kept taking Prochlorperazine pills, but they didn't seem to do the trick. Just before midnight I ended my old year with a special prayer to the porcelain goddess and felt much better after that. (This was definitely different from last time because I didn't have this SE). And as I was sitting on the floor next to the prayer device I heard my hubby yelling Happy New Year! I honestly wish and believe that this year is going to be a better one.
Again everyone: Happy New Year!
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Re tattoo size: think more like a pin prick. Smaller that 95% of my freckles. I probably could have done something to have them removed, but never cared enough. Went to show the top one to the nurse practitioner and my friend yesterday, and took me a while to find in.
Ellen
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Bigt116: I'm using those two meds of chemo - taxol and herceptin, starting January 14 th. let me know how it went for you. These are different meds from previous three chemo infusion. I have to take three similar treatments of chemo. So I'm kinda nervous starting new treatment. Sorry if I don't respond to some posts but lately all I do is lie down. I get tired and dizzy so I'm sleeping a lot. Also I took medicine for my tongue, have thrush. So I got nystatin
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For all ladies who had a mastectomy:
Do you have tightness, itchiness, pulling and pinching pain around the scar or armpit / arm?
Do you feel it all the time or only sometimes?
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Happy New Year to all! May everyone have better health in 2014.
Lovely picture Lissy. Your daughter is beautiful.
I feel very guilty for saying this but I have been very well the last 4 days. (1 week to infusion 3). So well, that I decided to walk/run the Brita Resolute 5k run on New Years eve in -17 deg weather. My husband, who carefully questioned my thinking walked behind me to make sure I was OK (god, I love that man). I was fine, and came away with a renewed feeling that things were going to be OK, and that I needed to do more living when I did feel up to it. It struck me yet again that we need to take care of our emotional and psycological needs through this too.
Soooooo, ladies, I challenge everyone to do something REALLY NICE for yourself this week....
JAB
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