August 2010...anyone starting chemo besides me?!
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Carolyn: I KNOW I'm overtreated. IMO that is much better than being undertreated! I do google, but I'm pretty careful about what I read, I try to stick to reputable sites.
Lizzy: I love animals too and forgot that in my bio. I also love to read, which seems to be another common thread with a lot of us. I am so glad Sweeney had the idea for the sharing. It's been great reading about everybody.
SoHard: Great idea on the cruise.
Rachel: (((HUGS))) while you wait on test results. For me that's been the hardest part of this whole damn thing.
Tomorrow is D-Day! Wish me luck. We had some friends over last night, a friend who is having her last chemo today, while I have my first tomorrow. She will have surgery in a few weeks, and I've already had surgery. So it was neat to share my surgery experience with her while she gave me the "getting through chemo" tips. I've got tons to do today, things I want to get settled before my treatment just in case I feel like crap later.
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ladyinbama
Good point!!:-) ..and thanks to everyone else who responded, I feel much better. I promised dh I would be careful or he has threatned parental controls;-) (though neither of us is computer savvy enough to know how to do that, luckily the kids are young enough that we have time...)
Ok all, I got a really cute short cut about 2 weeks ago. I woke up today (day 10) and even though my hair isn't noticeabley falling out yet it is dead. I look like I have a small malnourished animal on my head - we're talking baaaad toupee. So my wonderful sister is taking a few hours off work and picking up movies and pizza for all of our kids and mommy is going commando. Wish me luck! I'm really not that upset now, I just want this dead thing off my head;-)
Carolyn
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SORRY, GIRLS! I was so engrossed in HGTV last night I forgot to publish our weekly poem! I have 2 short ones for you all this week:
WHAT CANCER CANNOT DO
Cancer is so limited that:
It cannot cripple love
SO WHAT
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spiritI'll pray for you as I hope you pray for me
In this life don't feel so empty.
Come outside and play even if you feel those days are over
Feel your face, hands, arms , lips because they are you
Having cancer only makes you realize that life can sometime make you feel blue.
So what!&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&
TRY TO DO ONE GOOD THING FOR YOURSELVES TODAY
Your FOREVER FEARLES Leader!!
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SOHARD!!!!!!! bring on those travel plans!
That is a great idea. I don't care where we go...let's just go!!!!!!
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Well, still heavy bleeding which I think is contributing to my fatigue. I was able to get out of bed and make breakfast this morning. I HAVE to get back to rehearsal tonight, since I didn't go yesterday.
The frustrating thing is that I don't belive that pushing myself is going to help. I usually push myself farther than I should, but at this point it just makes me sicker. I'm hoping that this period stops soon because I think that will make a difference.
Best of luck to the end of August gals! We will all be in the thick of it soon.
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lisasinglem
Hi Lisa,
Sometimes periods will come more frequently in perimenopause before they start to spread out. (although sometimes anesthesia, and probably chemo can throw them out of whack) Is there any way you can get a cbc to make sure that you aren't anemic? Maybe they'll let you add an iron supplement (then you have to watch for constipation). So sorry you have to work when you're not feeling well - hope it goes okay!
Carolyn
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Lisa: First, I want to tell you your job with the students sounds really cool! What wonderful work as it totally helps them help us. In going to Yale my consideration was dealing with so many students but how else can they learn? I decided I would and I have been completely happy with my decision. After my bilateral, I must have shown my (former) breast site to no less than 15 people in 24 hours!
In any case, I am so sorry to hear about the bleeding. You (all) will probably hate me but that period of mine would come, stay for a light 3 days, and go without a trace. No pain, no PMS (or so I like to think!) but after bilateral, I got pain, and bled heavier. Our bodies are really going through it right now and I hope you will be feeling better soon.
Also, on the work discussion, I was just talking to my boyfriend about that very topic. I want to try to get back to work as I am getting bored and am just not sure what to do. He said there will be other jobs but there will never be another body so you really need to focus 100% on your health and stress does not help the body heal. You seem to really like what you do but rest is so very important right now. I hope you can come to a decision that puts your health first. I know work is an obvious requirement that we really can't avoid but I think we all need to be sure our bodies can appropriately heal while we try to work also.
I just wish you well in the way you are feeling today, in hopes you feel better soon, and that you come to the correct decision regarding caring for yourself and trying to strike a balance with the necessary (evil!) of work obligations.
Best of luck-Liz
PS- I still think you need to consider the Old Navy mannequin gig!!! You don't even have to move your lips! You can make some cash and give your vocal cords rest! You are fiercely attractive with your new mannequin baldness!
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I too was at a teaching hospital. Felt up and ogled by many! It's makes me feel better that I'm not alone with the change in my period after bmx. How is your port feeling Liz? I have many appointments this week and hope to start inching forward, burn check being the most important. A
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Adey-
My port is ok but unfortunately I have a small neck and I can feel the vein over my collarbone and I can actually feel the "pic" line in there....gross!!!!!! One year of this?! What a freakin' ride we are on!!!!!! In the end, however, I am sure glad I found out something was wrong b/c the 6 months coming up on dx, I knew something was definitely out of whack. Do I wish I had something else? Absolutely but I do take relief in having found out what was/is wrong with me!
I never thought I would be uttering such words!
Liz0 -
DON'T FORGET....
Ladyinbama is going to CHEMOLAND tomorrow!!!!!
Best of luck to you, Lady. I wish you well. Adey and I should be joining you any day now.
Liz
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EVERYONE:
BEFORE I get into chemoland, please send me your future dates on txs so I can make a spreadsheet NOW! I am a little concerned about my ability to keep up later if you all get what I mean!!!!! Marble notebooks?! Exactly!
Liz0 -
Well gals - I'm here: Reporting to you from the chemo room. Meds are all done' just receiving fluids now.
IT didn't go so well this time - they couldn't get a decent vein and when they did, the adriamyacin got out into the skin, made it red and I had to have a shot of steroids.
Had to find another vein.SO I'm getting a port put int - next Friday right before my next treatment. this really sucks - I'm afraid of getting a port! But they feel it's best at this point. At least I skated through the first few weeks without it! And it's gotta be better than all the needle sticks I got this morning.....
pray for no nausea - I'm going to take the comp first thing when I get home and they are sending me home with something else; I cant' remember what it is, and I have a bunch of AN's going into my IV too.
I'm about to fall alseep here............
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Ahh calamtykel - sorry to hear about this. The port will make it easier - it takes a bit of time to get used to, I would say about 1.5 weeks. I hope you don't have too much trouble from today. Omaz
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calamtykel- below is a site that shows the port, if you want to see. It helped me understand a bit better.
http://diehlmartin.com/infusion/
The gentleman in the photo was a photographer and wanted to help people prepare... or something similar.
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Calamtykel- Don't worry one bit about the port! It is so easy...do you know it only took 20 minutes to put it in?! It is such a procedure to totally not worry about. Plus, and I think I mentioned this, it makes sure the chemo gets ONLY into the vein. Don't worry at all and the link that Adey sent is wonderful. It shows you everything. BTW, Adey, I checked it out and that was very helpful so thank you very much.
I think you will be happier with the port and will save your arms from overuse. Did you have an mx, bmx, a lump or none of the above? I had bmx and b/c of node involvement I only have 1 arm they can use so that is why a port was all but necessary for me.
You are going to be happy you got the port...it makes your life and their's much easier.
Thanks for reporting live from chemoland, btw!!!!!
Your FEARLESS Leader!
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Calamtykel - somewhere on this site, and I so wish I remembered where, there is a post about the ports and placement in the arm so that it doesnt rub against the bra. If anyone else has seen it, please post so it can be of help to those that still need to get the port. I found that my underwire on my good side rubbed alittle bit against it and took a little getting used to. In the post they talked about using a marker to show the surgeon where the bra lays etc. Some surgeons will be nice and help you out with this. Anyways, just a suggestion. I am so sorry that you had problems, but the port will be wonderful. I am a very difficult stick and couldnt have done this without it. They had to stick me 4x just for the IV for the surgery for the port, if that tells you anything.
For all those doing chemo this week - thoughts and prays are with you all that everything goes smoothly and that there are no issues with SE's etc. Lots of hugs coming your way.
First day of work done after chemo, handled it pretty good, girls I worked with were great with me, made sure I didnt have to change anyone that was stinky, that helped lots and lots. Have a call into the nurse/oncologist to find out about what to do with the rest of the time I am nausous, I only have the compazene now, and it only works "ok". If I keep drinking so much milk to help with it, I'm gonna turn into a cow with one udder.
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LIZZYMACK1 - my Third AC tx is scheduled for Sept. 9th and the 4th and final will be on Sept. 23. Thereafter i'll have weekly Taxol for 12 weeks but not sure if i'll start the week of Sept. 26 or the next week. Does anyone know? i'll ask the NP this friday. Also I still have some pain and soreness on the port side especially if i move my arm a certain way. Is this normal? since i had bmx and nodes removed on both sides I have no "good" arm so I am glad I have the port.
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Good Luck tomorrow Ladyinbama! Hope everything goes smoothly.
Sorry you had a hard time Calalkytel, I bet the port will be helpful. I don't have one, and I am still glad I don't, but even with my very good veins I am beginning to understand with all the transfusions why one might have made this easier.
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Home now - and guess what?? They forgot to send home HOME with the emend! ARGH! I called and the cancer center was closed - paged the doctor; got her on the phone; she called the cancer center and had someone still there scrounge around and find if they still had samples, which they do so my brother's picking them up for me tomorrow at 8:00am. Hoping I do okay till then - can't take it until tomorrow am anyway.
Had some eggs and toast for dinner and drinking lots of cold ginger tea with electrolytes added.
I'm unhappy about the port........I have some Ativan that she sent me home with (I've already taken the compazine) and she said to double the comp with that and see how that works; and then the emend tomorrow. Wish they sent me home with something STRONGER this time; at least just for tonight; but we'll see. I'm taking it easy - not going running or even walking; no exercise tonight; just going to lay low and see how the body handles that. So far I'm okay and it's about 6:00pm.
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Adey: keep us posted on how your appointments go this week and what they say about the burn. Hopefully you are heading to chemoland with me!
Zenith: thanks for the update & I will list your txs each week, as they apply.
Iowasue: hardly any SE's?!! Great news! Consequently reading about your weekend activities made me tired!!!! Good for you.
Calamtykel: definitely try to take it easy today. I think you are going to do better if you allow it to travel your system at your baseline daily pace as opposed to revving up your body with a workout and thereby expoditing it's tour of your body! I hope you have a restful night.
Your FEARLESS Leader!
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There is a cruise that is organized by this group - http://www.breastcancerwellness.org/index.html - that I have been thinking about joining next may. Just not sure I can afford it or would have enough vacation time by then but it is surely a reward to look forward to!0
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Thanks for the well wishes. I'll let you know how it goes. I did my "chemo shopping" today. I had to explain to DH why there was a giant container of baby wipes on the back of the toilet.
Calamtykel: I'm sure you have your reasons for not wanting a port, but like others have said, getting mine put in was a piece of cake. I have a great surgeon that I love (he did my BMX too), and I'm sure that makes a difference; but it was a short procedure. I was sore a couple of days, but not too bad. Didn't even have to get any pain meds. I remember when my father did chemo 15 years ago and they didn't do ports as much then and his arms were pretty much butchered before somebody finally told us about the ports and he got one. So I jumped at the chance to get one from the beginning. I hate needles, so I was soooo glad to get out of being stuck every time.
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hi all. I had my third round of hercptin today and saw my doc. I had my first TCH two weeks ago. The doc
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Hi all. I had my third round of Herceptin today and saw my Onc's assistant. We talked about my first TCH and the way I bottomed out so badly, both physically and emotionally. Next time (Sept. 7), I am going to take steroids differently. I am going to taper off rather than just quit Day 2 after chemo. I so hope this helps.
Too, today when they accessed my port they didn't use any of the cold stuff or the cream. She said they could not use the cold stuff repeatedly because it thinned the skin so, and I didn't have any cream, so I just took a deep breath and she poked me....... One lesson I have learned during this BC saga, when someone tells you to take a deep breath, nothing good is going to happen!! Has anyone else experienced this?
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Deb J I mood crash on day 4 and 5 after chemo. I take dexamethasone for three days and quit on day 4. Aha, that makes sense now.
I am on a one week delay for my next chemo because my 7 year old Grand daughter arrives on Wednesday and stays until the 7th. I haven't seen her in nine months and I am so excited. We share a birthday and I had to be messing around in hospitals and such so I couldn't go visit her for our birthdays this year for the first time. She doesn't know I am sick or bald so we will have some talking to do. I got a coloring book for kids about cancer form the SCCA resource center and it is simple and not scary. We will do okay I think. I think she is just wonderful and I am so excited. Did I mention that I am excited.
So about me.
I grew up in Chicago, I am an only child and no only children are not selfish. I always knew my things were mine and had no issues about sharing. My husband is the oldest of six and has been known to hide his cookies in his dresser when the kids were still at home. Hah!
I loved dance and ice skating when I was a kid. We all played outside a lot, bikes, rollerskates, the metal over your shoe type. We played jump rope, hop scotch, bounced a ball against a wall games, hide and seek, so many more and went in when the street lights came on.
My Grandma had a farm in the south and she had no running water or power. I loved going to her farm more than I can express.
I have four grown children, three are married, one has a sports car. He has loaned me his sports car, a Viper, from time to time. It isnt a grandchild but is really a lot of fun. I am an old gear head but I only go really fast out on country highways and limited access roads.
We have one grandchild in Chicago, two in Arizona and one brand new, two week old, right here in WA. I am so happy to be out here with our daughter at this time. I have missed her terribly as she moved to CA after college and we had always been close. Now she has a little girl too and we will all have a great adventure together.
I am married for 32 years to my hardworking, devoted husband. He is trying so hard to be helpful and is doing really well at it. He had a hard time at first, sort of in denial. He had been out of town for all of my first apppointments, He was going to go to work the day of my surgery! He didn't after we had a talk, yeah one of those, "What are you thinking" talks that you can have after 32 years of marriage. He is doing much better now that he has gone to an appointment with me at SCCA and met the Doctor there and I had my first chemo that day. He has also been very kind about my hair.
My degrees are in psychology. I have always worked or volunteered somewhere in social services. Previously in programs for homeless families. Most recently for a mission in Haiti where we make bio-sand water filters. Clean Water For Haiti.org I can write about health care in Haiti another time.
I too love to read and love animals. I have two cats and one dog. My special dog died in my arms three years ago after some neighbor kids did something that stopped him from breathing. I was right there and I did cpr to no avail. Even though two vets did a joint autopsy on him we never found the cause. No bleeds, no tumors, no nothing at all that they could find. This was just after my mom died so it was an exceptionally hard time in my life. I am close to ready to get myself another big dog, Ernie was a Golden Retriever and 8 years old.
I bought some art supplies and books and plan to try to paint or something similar.
Where we live now, we just moved here to WA in July, we have a horse barn and fenced pasture. I have invited a local horse rescvue to place a couple horses here if they have someone who can take care of them, I don't know how. I think it would be so wonderful to have horses here, probably just retired old guys who like to hang out together. I think it would make my heart sing.
I discovered I had cancer just because I had a slight itch on a friday evening (of course) and when I reached over to scratch it something felt hard. I had to wait till Monday to get to the Doc who saw me immediately and I had 25 momograms, an ultrasound and a biopsy all that day. The next I flew to WA to find a house. Then three days later I got "the call" while in the car with the realtor that I had cancer. Six days later back in Illinois I had the stereotactic biopsy and a week later surgery. Then I moved to Wa a month after that, then three days later had my first appointment at SCCA for all the rest of my treatment. Woo hoo, it has been one wild ride. Thank God I had a friend living in our house who did a huge amount of the packing. She was an angel when I really needed one.
So thats my story. Theres a lot more because I am twice as old as some of you, 65, and therefore have more stories.
Love you all
Ginger
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DebJ - I hope tappering the steroids/drugs helps you not bottom out, I have heard them do this before and it definintely works for some. I hope this works out for you. As far as the port goes, I know that they talk about the skin thinning on the port, but not with only having used the port only 3x's. I was given a little tube of emla (sp) cream and some bandages to hold it in place and told to use it about an hour before each treatment so it would be good and numb. Which after the first couple I didnt use it anymore cause the skin had kinda formed some scaring, and it didnt really hurt much anymore, and I would also forget to put it on. I am not sure why you couldnt even ice it, maybe someone else has heard more about this. Maybe they are just being causous. I would ask more though, just in case. I have found that even each one of the Chemo nurses has their "own" way of doing things.
Ginger - Animals can be such a soothing essence for the soul. I used to have dog that would curl up with me whenever I cried and I know she took my tears away. I hope you have the best of times with your grandaughter. I am so looking forward to my first grandchild in January. I cant wait to spoil her/him or both (yep could be 2) then. I am also pretty impressed that your dr got you in so quick after finding the lump. I couldnt be seen for almost 3wks. Let me tell you the waiting was not pleasant.
Hope everyone has a wonderful day. Off to getting ready for work. Woo Hoo.
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After what my poor arm went thru yesterday I guess I'm ready for the port
Just can't believe it's "just one more thing" on top of it all. I had a completely nausea free night last night after my infusion yesterday. Keeping on the compazine and last night took ativan with it (that's great stuff!) THis morning my brother's picking up my emend that they forgot to send me home with.
So far I just have a headache and no other symptoms; but the headache's pretty bad. Took two tylenol and drinking some coffee which may help too. I'm sure having my period is part of this headache thing too since I didn't have it last time.
going for my neulasta at 3 today.........OH and my blood counts had returned to normal yesterday; my wbc was actually point high. I was worried (I'm wondering if my lyme has returned) but she said that that is normal since I had the neulasta shot - it worked a little "too" well.
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Hi everyone-
Wow, what great stories, thank you so much for telling them. I loved reading them. Sorry I've been gone for a couple of days, we've been busy with the kids. But I just managed to read back on all the posts and was completely entranced by all the tales. Pets seem to be a theme! (Me too btw, a 21 lbs cat named Franny (and yes, I've tried to get her to lose weight...it truly is a "glandular issue") and a chocolate lab named Paddy).
Periods also seem to be a theme. But when are they not? God pops in there every once in a while. Kids/Grandkids show up fairly often. But humour seems to be the overarching similarity!;)
So I'm now 10 days out from my last chemo and am grappling with headaches. Has anyone else gone through this? I can't figure out if these are chemo related or possibly allergies. The other thing I'm wondering about is memory loss, is anyone else having moments where things completely escape them? (I can't remember who told the story about standing at the grocery store in a complete fog, but I can totally relate!!!) I find I'm striving for things in my mind and they slip past without me being able to grasp them. Concepts, words, stories, things I want to say....just gone but not that far out of reach. Just far enough that I can't remember and I'm bothered by it. Anyone else? Do you think it's stress or really something chemical happening up in my noggin?
And finally as usual, thanks. You guys are awesome and this group is really helping me. I find myself starting stories to my husband/friends with "Well, my online support group says...."
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Well, I have to say, to answer the question about SE's being cumulative: I feel a WHOLE heck of a lot better this second round than the first. I'm hot and flushed and a little achy in my legs (haven't had the shot yet today) but other than that I'm eating like a horse - I'm starved! This is totally different from last time. And I'm afraid NOT to eat because it may trigger nausea. I just downed three pieces of rice bread toast and three eggs!
Anyway, my headache went away with some coffee and 2 tylenol. I think Sweeney that the periods definitnely do NOT help the headaches along with the chemo, since last time I only had a very tiny headache on day three or so.
On the flip side, my hair down there is coming out in handfuls and when I pull it on my head it's all coming out too. So I guess that chemo is working on cells! I'm gonna see that as a GOOD thing! I may head over to my friend's so she can really buzz it - haven't had the courage for that yet.
Good news is that the stray cat we found that has a REALLY infected eye that we absolutely cannot afford to treat, we've found a cat rescue who will pay for his treatment as long as we board him. I'm very relieved for this - we really dont' have the $$ - any of it - to help him and he's a nice cat who showed up here a few days ago..........yes, pets are a theme!
Hope everyone has a good, side effect free day. I'm waiting for the boomerang effect tomorrow, day 3, but so far for day 2, it's been better than last time!
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DebJ: I hope things are go better for you going forward. I heard that about the cream. Take a deep breath has not led to anything bad yet but I guess I will let you know more after I start!
ladyinbama: Hope you are doing ok today. Check in and let us know.
Sweeney: This is my feeling on the forgetfulness induced by chemo. Most of went to college or have, in some way or another, found ourselves full of college humor in the wee hours, hysterical over our forgetfulness and the general anesthetic bliss we knowingly put ourselves in! Then you have the "this is your brain, this is your brain on drugs" campaign that was quickly refuted with the very pertinent information involving the regeneration of our brain cells. So, I look at it this way: yes, in the interim, chemo is going to take down some brain cells but just as our brains rebounded from all that self-induced burning of cells, so shall it from this. The difference is we "chose" to enjoy some college humor, however, we did not choose cancer.
Why the effects of chemo on our brains and making us forget things is so very upsetting vs. the choices we knowingly made putting ourselves in that very state is a bit of a conundrum!!!!!! It passes, Sweeney. For now, we must accept we might not have the greatest memory etc.. for a few months until this is done. Therein lies the issue also is that chemo has a more lasting affect than did the stuff we did in our college years but, be that as it may, if you strung together all those nights and all those activities, it was sort of like an extended chemo session!
There are chances that some elements of chemo brain could be permanent but that was the same for a number of things we have done over the years. Try to keep it in perspective.
Your FEARLESS Leader!
I think the prevailing campaign on this thread is "get a notebook and write everything down!!!!"
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