Starting Chemo in JAN 2007
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Joni - I did not get a port (yet) I guess it's still an option, but they didn't push it. They managed to find a good vein. The infection in my vein did clear up right after the last chemo, but that one vein is a goner for sure. I probably should get a port - but I feel like a toddler "I don't want to." I am still doing FEC - 2 more to go of the 6. I was just thinking today that if I wasn't in the clinical trial I would have done 4 AC and I would have been already finished.
Sex is pretty non-existent here too. I think it's a combo of the hormones, the fatigue, oh and I feel like crap most of the time. I think it's common from what I've heard, I just hope that I get some energy back when chemo is over. I'm feeling pretty bad for my husband these days. -
Well its a holiday today and all my kids are here with hubby cooking turkey while i sit and relax . Its day 5 after my taxotere and man its slugged me out ! Caya i take the tylenol 3 for my muscle aches and pains which I get mostly around my back and ribs ..... Funny I feel that this chemo is working , looking at getting back to my old self , the end is in sight .....for all of us !
So anyone who is feeling blue .... i hear ya ... vent girls vent i have had a renewal sort of in terms where my head is at lately feels like maybe we are beating this thing down to ground level . We are all doing everything we can and it shows , I have cried , screamed and pounded my pillows , i have also learned to enjoy the finite details , like the birds singing and every sunrise to sunset ..... I have battled 2 cancers both 1 month apart from each other, i am still here. Plans are to stay around a lot longer .
And sex you say ... ? ummmm hugs and kisses and smouches is about all we have done for a bit . I need the whole bed so that has been "taken" for me to rest in and I take advantage of it .
I am doing rads starting the end of May I have a planning appointment May 11th . After the rads are done that's it ... then what ? Well we can only control so much , I look at it as if I had a heart condition I could go anytime , if I had MS I would be living with not knowing what my body would do everyday.
I get a snippet of feeling "good " a little bit more often and think chemo will not last forever ....
A good long week in Tahiti seems good right now -
Jan - I have one vein that they can't use anymore either. I think the Epirubicin is pretty tough on our veins. I only have 1 (ONE) more to go....April 16 is my last FEC.
I was doing okay on #5 until last weekend, which was very bad, mostly because I hadn't slept all week.
On #6 I'm for sure going to take the sleeping pills.
One thing that I do find helps my aching IV arm is moist heat. I usually wrap a towel around my arm, and sit in the bathtub, occasionally turning the jacuzzi jets on to help my arm. The also give me a full bag of IV fluid after my chemos now. Jan are you still getting the fluids for a couple of days after each treatment. I think that is a very good idea.
Oh...and my hubby and I booked a cruise for 12 days in October. I have never been on a cruise, so it should be interesting. Has anyone here ever been on one? If so, did you like it?
Watching the Masters and the Men's World Curling championship this afternoon. Tonite...Dan (who is still in the doghouse) is taking me out for dinner...going with a girlfriend (we've been friends for 33 years) and her soon to be hubby. They are getting married on Aug 25 and I'm standing up for her.
Oh...well better close the old pie hole for now.
Happy Easter Seesters!!
Joni -
Hi,
joni,
Where are going on the cruise? I have been on a couple of cruises and loved them. They are very relaxing. What is really nice is that you do not have to keeping packing your luggage- everyday you are usually at another port. You have entertainment at night and the food keeps appearing. You can even have room service. That sounds like a marvelous way to celebrate.
Shorti,
So glad you are feeling better.
I just came back from my onc office. They retested my blood. My oncologist did not believe the count could be that low, considering I had a neulasta shot last Thursday. She thought the nurse accidentally diluted the sample. The nurse was not very happy about that accusation. I felt badly for her. I was even happy when the results were the same--- I like the nurse a lot - In a way it would have been great if she had made a mistake- for me- but not at her expense.
The nurse thought I should be getting a blood transfusion, but the onc disagreed. She thinks the neulasta shot should kick in anytime now. This is not her personal nurse- she is a nurse who administers the chemo. Trouble abrewing.
They told me to go home and take it easy and call if my fever spikes. I have been on a z-pak anti-biotic since yesterday and have not had a fever since then. I still have a little cough, but I think I am on the road of recovery. They also gave me a procrit shot and will give me another one next week.
How is everyone else doing today?
Viddie -
Michigan get-together folks: Joni, wow, it would be great to have you come all the way from Alberta, DTW is a hub for NE airlines and a short distance from our house. Hope you had Happy Birthday!!!!
The Grand Hotel I'm sure is very nice but rooms range from $4-600 night, a bit out of my range. There is another very nice hotel in Bayview, a lovely little village of early Victorian "cottages," on the north coast of the great lakes. Each house is different and the community has been beautifully preserved for almost a century; it's like going back in time to stay at the Terrace Inn, no TVs, no phones, all antiques...but a lovely sitting porch with rocking chairs. The rooms run $75 and up a night, and there is a "Somewhere in Time" suite that was actually used for the movie.
http://www.theterraceinn.com/history.htm
On the other hand, my house would be free, if we had a small group, of course, the scenery wouldn't be nearly so beautiful as it would be in northern Michigan or the UP. Stratford, Ontario would be another possibility. There are lots of lovely hotels and Bs&B but you need to book way ahead during theatre season, which runs from May to October.
Sex & Taxotere (& Taxol): NOT AT ALL RECOMMENDED. The lit says you can actually tear a hole in your vagina. It's just a few weeks you have to forego, and then I would recommend being very careful and using a condom, until you're back in "shape."
CHEMO GRADS...I recommend getting into some aerobic exercise ASAP, starting off very slowly. Keep it regular. Nothing made me feel better, though I am still not 100% and a little cranky.
Mizsissy -
Viddie,
We fly to Rome, 3 days there, (have to see the Vatican) then we get on the ship...goes to Monte Carlo, Florence/Pisa, Naples, Athens, Corfu, Mykonos, Santorini, and then sails to Venice. We have 3 days in Venice, and then we fly home.
If I get tired I can always go and have a laydown. Dan got us a room with a balcony, so it should be nice.
Has anybody flown since their surgeries? Did you have to get a compression sleeve for your arm? My sister (an RN), says it would be a good idea.
Mind your Keesters...it's Easter!!
Ha Ha...Joni -
Good article, Amera. I think we all feel the same way after a cancer dx.
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Great article
The taxotere wiped me out also. -
Joni,
A room with a balcony is the only way to go. It is like having an extra room and you cannot beat the view. What ship are you on? We cruised that route around 6 years ago. You will absolutely fall in love with Santorini. You have to get pizza in Naples, and Florence has the best Italian ice cream. Can you tell I am hungry? Of course all the sights everywhere are breathtaking. We haven't been to Venice, but plan to someday. It sounds like quite a dream trip!
Viddie -
Hi there, made it through Taxol #4!! 10 minutes were left on the IV machine when I had to jump up unplug and run to the bathroom! I don't know where that came from but dang can there be a happy medium please. Nothing I hate worse than an explosion like that and I'm not at home. Then came the Aranesp shot and I feel as if I am being stung by the worlds largest bee. So home I am having mega hot flashes and achy legs. Oh and sex what the heck is that? My poor Dh.. I feel like I am dry rotted and everytime he touches me I tear, get an infection or something, Yeah for some reason the gels and such turn into "glue" on me and therefore doesn't help much. I sure miss him though. But I just can't "get there". and that's another thing to add to our list of how this disease has changed our lives.
I have been to the Grand Hotel at least the outside of it. longest walk I ever took in 1 day 8 miles around Mackinaw Island. Loved it but thought I would die from walking. It was my Dh that as we were "walking" told me about that movie. I never even heard of it but he is a movie buff and never ceases to amaze me with what he remembers. It's weird though he can't remember to put toilet paper on the roll. Crazy!!! Hugs to all! Happy Easter in case I don't post over the weekend!! -
I'm game to go anywhere. That Inn looks just fantastic, that would be super, Mizsissy. Yes, I will have to get into exercising after the chemo and rads are done. I'm still doing my daily walking.
Viddie, the name of the ship is the Star Princess and the dates of the cruise are Oct 4-16. Both pizza and ice cream sound right up my alley. Did you take many of the day trips? Dan & I are going to take a few of them. One to Florence/Pisa, one to the isle of Capri, tour of Santorini, and also a tour of Athens. It's my job now to figure out which ones...so I have a project.
I have to start getting ready...we are going out tonite.
Hippity Hoppity....hugs...Joni -
TPPJ
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Lynn, any idea what the diff. is betw. Taxol and Taxotere? I wonder why some of us get one thing and others get something different.
Some women have an allergic reaction to Taxol. It is from the Few Tree and very toxic. So then the put them on Taxotere from what I have heard. -
Oh yeah, I got my test result back from my abdominal ultrasound (cause my liver counts have been too high since before I started chemo). Well anyway, my liver showed no mass, kidneys, bladder, splean, etc.. were all normal. There is a small poylup in my gall bladder whatever that is. But my liver seemed fine.
My Ono is going crazy trying to figure out why it's so high... Still, no outcome. -
Hi Everyone,
I wondered when we would get around to the topic of sex. And here we finally do during Holy Week, :-). All I can say is that cuddling is still good.
Viddie I think husbands are like ten year olds sometimes in terms of blurting out things they don't mean. I was so glad to read your happy ending with reconciliation.
Nancy congrats on the last Taxol! Please let me know how fast you get rid of the SE's now.
I'm another May rads starter but I think it will be closer to the middle of the month.
My brother's nice gesture of having Easter has turned into a near disaster. Since he lives much closer to most of my family, everyone else invited themselves to the point where it will be a huge noisy mob, and my in-laws are now refusing to go there so we will have to do TWO Easter visits instead of one, and my mother is having conniptions about the food and relatives who are now saying they weren't invited. Yikes. At least it's not a low white cell count day. Lots of kids, dogs, and up to 30 people with various germs. I hate that I have to think of my relatives in terms of germ-bearers, but I'll just be sure to keep washing my hands. Holidays shouldn't be this stressful for healthy people, much less bc patients. Doubtless I'll have some good stories for you later, however. It's a boisterous group. I don't blame my in-laws at all.
Those cruises sound heavenly about now. We've been thinking about some kind of trip, too, and that seems like a good way to go.
Robbinjaye I'm so glad to hear your ultrasound was normal. Every good test is a gift! - Skye -
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I wondered when we would get around to the topic of sex. And here we finally do during Holy Week, :-).
LOL, Skye! Tooooo funny!
Robbinjaye, glad your liver didn't show a mass. I hope he figures out what the deal is with the high counts.
Off to the dermatologist this am to check a spot on my scalp that a brush would periodically catch and was painful. She could never see anything, but now that I don't have HAIR!!!!!!!!!!!!! I can see a tiny white patch... I don't think it's anything, but I figure I'll have her make sure before my hair grows in. Speaking of which, it's growing much faster than I thought it would. I figured I'd have far less for this dermatology visit. I am just so grossed about it being white. (No offense to anyone w/white.) I just never dreamed that would happen to me (going snow white at 41!). Did I read that it can start coming in white but then revert to normal? Or is that wishful thinking? -
Count me in for the get together in Michigan! I just HAVE to go! My preference would be for a weekend because I really don't have much time that I can take from work.
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Ok Gals,
Great Lynn..love to have folks from the East...maybe you can round up a few more!!!
I just spent most of the morning getting together a little web page listing possibile locations for our gathering. Of course, I haven't discussed MAINE, my favorite spot, but I think Maine will be too far too travel for many people. I am available for a get-together in Michigan or Ontario anything EXCEPT the last 2-3 weeks in August, when I will be in Maine.
Here's a link to the possibilities. Everybody take a look, let's discuss it, and later we'll run a poll. EVERYONE IS INVITED!!!!! Let us know what dates you'd prefer too.
http://www.lindaswift.com/BCInns.htm
I think the most practical and nice choice would be the Old Rectory in Stratford, although it is a very popular place and hard to book. And I'd be very happy to host a get-together at my house...but let's get your reactions!!!!
Mizsissy -
TPPJ,
I have heard from many people that your hair will usually revert back eventually from the first new growth...unless you are of an age where the white would be taking over anyway. I've just made up my mind to dye it red no matter what color comes in. I changed my avatar to one of me in Ol' Red because I'm trying to think of myself as a haired one again, even though I know it will be months before there is enough to look like anything much.
I just finished vacuuming my downstairs (puff, pant) and was thinking, next time I know someone who gets a cancer dx, I'm going to get a bunch of people to pitch in with a gift card for Merry Maids. I always use up so much energy on the "good weekend" trying to get housework and laundry done before the next treatment when I know I will barely be able to feed and bathe myself for a week. The state of my house is a major source of bummerliness for me. The dh works so many hours and now with his arm brace too he can't do much. Anyone else find this a major problem? - Skye -
Your house is gorgeous, Mizsissy! The inns are too. Unfortunately, at this point my life (w/the kids so young) I doubt I'll be able to be in on the inn, but I'll be thinking of you all.
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Skye,
I was thinking of creating a web page of Chemo and Post Chemo tips and I think getting help on housework is a major one. Ssome women who didn't have help and couldn't keep up were totally overwhelmed and depressed by their living situation at the end of chemo.
Fortunately, I had a few periods where I had energy and help from my husband, and I did some major cleaning...partly because I had been forewarned about the depression some women were facing from the disorder after chemo. It is nice to "wake up" from chemo in an orderly house.
Mizsissy
PS...Hey Lynn, are you bringing the sex toys?!!%^$^$!! -
Good news: My dh is washing the kitchen, dining room floor. What better present could you want? On the topic of sex, I didn't know that Taxol had that effect, why doesn't the dr tell you that? Our one encounter was a little painful and I was wondering why and what to do next time. Hopefully that I'm finished with Taxol, that s/e will go away.
My terrific surgeon called on Good Friday at 7 pm with good news on my CAT scan. (What a dedicated dr SHE is.) The spot is the same on the liver as before (4 mm) which she said was good. If it had gone away then they would have thought it was cancer. But since it is the same, either it's a very small cyst or some inperfection I was born with. They will watch it for 2 years. Then today at the gym a nurse whose sister had breast cancer had the exact same thing with her liver and they never could figure it out and she is now 2 years out. So that makes me more reassured.
Sorry for everyone who is feeling bad in the last few days since I posted. The taxol pains are hitting me hard. Hopefully I can make it through Easter tom in all I have to do (my brothers and my brother-in-law who has cancer) and taking my son back to Michigan State.
They are going to do lymphatic map testing before my mastectomy on 5/1. I hope they knock me out. Those injections do not sound like fun.
Also on the subject of lymphedema, my surgeon says since I am small I am at a low risk for it. However, the nurse at the gym said I should get my arm measured before surgery in case I develop it and need a sleeve. Has anyone done that? It sounds like overkill to me, getting fitted for something you might not need, although I do like to lift weights and don't know how much I will be able to do after surgery.
Have a nice weekend even though it's very cold here. -
Quote:
Also on the subject of lymphedema, my surgeon says since I am small I am at a low risk for it. However, the nurse at the gym said I should get my arm measured before surgery in case I develop it and need a sleeve. Has anyone done that? It sounds like overkill to me, getting fitted for something you might not need, although I do like to lift weights and don't know how much I will be able to do after surgery.
You know, I have posted this before, but I am so confused about my risk for lymphedema. Both surgeons I spoke with said I am not at risk. Both said they have only had one or two of their patients develop it, out of hundreds of surgeries, and they were obese smokers. They both said I did not need to get a sleeve for flying and not to worry about lifting weights as long as I built up to it.
However, the oncologist said I am at risk. What that means I don't know. I have perused the lymphedema board and it sounds miserable. I do not want to take a chance, but having to wear a sleeve, not use hot tubs ever again, not carry things with my right arm, etc, does seem like overkill.
ACK! Just more conflicting information. -
TPPJ - I've heard that hair does sometimes come in white and then regain color. Mine was already grey to start with and I'm younger than you. Can't wait for hair of any type at this point. I'm suffering from serious hair envy at the moment. I had dreams all night about wearing a wig.
Skye - my hubby decided to splurge for a cleaning lady. She comes every two weeks. Totally worth the money. I can't stand having the house a mess - and it would be a disaster right now if I didn't have help.
mer1957 - great news on the CAT scan. How wonderful that your doc would call you right away. I have a mystery "spot" on my lungs. My onc said they have no reason to think its cancer, just can't tell what it is, but it hasn't grown. He mentioned that scans have gotten so good that they frequently see things that they can't identify.
Amera - I know what you mean about all the conflicting info on lymphedemia. I'm puzzled too. I have a friend that developed it on her NON surgery side (where she had a port for many, many months.) All her lymph nodes are gone on the side that is fine. But, her lymphedma side is missing no nodes. Go figure. I guess we just try our best to prevent it. -
I wasn't told about Taxol and sex either and I experienced the same painful reaction. Actually I had a tear and now it made me "gun shy".
About Lymphedema I was told that anyone who had lymphnodes removed was at risk and if you ever fly you must wear a compression sleeve. I get nervous about that because my rightside where I had 19 nodes removed is always puffy. My onc. checks me and presses around there but never seems concerned. I still think it's weird how we are all treated differently. I mean if we had our tonsils out, suppose the experience would be different there too? I know what everyone means about house cleaning, My DH works all the time too, and I am pretty much alone to handle it all.It wears me out.
Skye- I'm not done with taxol yet I have 8 more to go , but I got excited for minute when you thought I was done, I went yippee, but no such luck. In 8 weeks we'll have the true Yippee! Nancy -
Hello everyone:
Mary, Congrats on the scans...what a relief that is, I'm very happy for you. My doctor also said if there was no change in the spot, it might just be something you were born with.
Mizsissy, you have the most beautiful home...wow!! What a lovely area to live in. Whereever we decide to go is fine by me, I still have quite a few airmiles that I can use. I think it would be more of a holiday for you too Mizsissy if we went to an hotel or Inn. The only two date I can't make it for the summer are the weekends of July 7th (nephew's wedding) and August 25 (girlfriend's wedding). Sept I'm free all month.
Housecleaning was an issue for Dan & I when I was on the road all the time with my job, so we got a cleaning lady many years ago, and I just love her. She comes every Thursday, and as far as I'm concerned it's the best money spent. She also spends every 2nd Thursday for an hour giving me art lessons, as she is very talented in that area. We are currently just working on sketches, but I really look forward to it.
My oncologist has said "NO" vaccuuming, so I'm sticking to that rule that's for sure. The sawing motion is not good for your arm. Swinging motions (as in golf), are fine...haha...I happen to like to golf.
Nancy, my onc also said if you have any nodes removed you have a chance at lymphemdema. Also, rads can increase your odds of getting it, so I'm seeing a lymphedema specialist to check everything out for me. I still have a bit of swelling, but it is on my torso rather than my arm.
It was suppose to warm up here today, but it is still cold..is Spring ever going to come?
We had a nice time out for dinner last nite, but I was sure tired when I got home. Hope all are well.
Hugs....Joni -
Joni, I wish someone had warned ME about vacuuming. One day I got going like a white tornado and vacuumed almost the entire house, and very suddenly conked out and couldn't move at all. It was mid-afternoon and I was done for the day and felt terrible for 24 hours.
Mary...hooray for your clean cat scan!!! We're still waiting to hear about RJ's liver levels...?!!!
Nancy, one of my worst infections was due to unprotected sex...it's really best to forego completely I think. Strange how doctors will tell you everything except ANYTHING you need to know about SEX!!!
Thanx for your reply about a get-together...just in case you other girls "missed" my post...try this link again
Possibilities for Midwest Post Chemo Get Together, July, August, Sept?
I know it's difficult for people on the coasts to get here, but lets hear from the Michigan, Ontario, and Ohio folks....of course, it would be great to meet everyone in person who can make it. -
I'm all for the cleaning lady too. We have had one every two weeks. I call it my husbands "turn". I swear, it's all I can do to just pick up the daily piles of crap the kids drag in, put away loads and loads of laundry day in/out. It's never ending. I like my house in good shape...makes me feel "feng-shui-y". I call the cleaner my therapy.
I haven't had any extreme warnings about trying to prevent lymphedema at all. Granted, I think I had one node removed during the SNB to look for cancer, of which there was none. I wasn't told to be careful when I fly. I carry a gi-normous purse...always have. Hmmm.... having a sleeve fitted before symptoms develop definitely sounds like overkill to me. I don't think it's a common thing.
I vacuumed all Thurs. am (non cleaner week) and I was about ready to keel over at noon when I was done. Really did me in. Speaking of which, the Taxol got me today. I'm exhausted, had some numbness in fingers/toes (gone now), had some hip pain as I laid in bed this am...also since gone. My face is all red hives, incl. on top of my head as my dermatologist noted this am. So very attractive. I hope they tone down by tomorrow so I can look passable for Easter. I hope my kids go to bed early because the bunny may not make it long enough to make up the baskets. Also, the tooth fairy and bunny may be colliding in here tonight. -
Nancy, I'll blame chemo brain for thinking you were done, I must have misread one of your posts. Wish for your sake I had been right!
Mizsissy, you do have a lovely home. I don't know if I'll be able to make a trip to MI or not but Sept. would be best month for me. I made 3 trips last fall. And by all means, list housecleaner on your chemo tips! I've been sitting here reciting to the dh how many of you have had cleaning help. To his chagrin. I wish my onc had said no vacuuming. He never said no sex either.
On the lymphedema, I had two nodes removed from the left side, and I've been babying that arm since, remembering to elevate it, no more carrying a shoulder bag, nursing every hangnail on my left hand. My neighbor is also small and she got lymphedema while still in the hospital for mastectomy. I will definitely get a sleeve next time I fly. But I confess I still use hot tubs, just keep my left arm out.
Well, ladies, should I survive Easter at my brother's I'll let you all know how it goes. - Skye -
I didn't know you lived in Pickney(sp?). An attorney I work with lives there and drives to Troy, MI for work. Now I see why he lives there. It's beautiful. I will try to do any place but Maine might be far. It sure looks beautiful though and I've always wanted to go there.
My solution to vacuuming is hard wood floors. I love them. -
Hi Mary...I have hardwood floors all through the house (which WE installed ourSELVES), but they still need vacuuming!!! In fact, it makes vacuuming harder because I have to chase the dust bunnies...four cats makes lot of dust!!!
Would you prefer Michigan, Pinckney or up north, or Ontario?!! You could easily do a daily commute to Pinckney, but you'd need to overnight in Bayview or Stratford (and maybe that would be more fun!!)The only two I know of in MI are you and I, and then there are Caya and Shorti (Sharon) in Ontario who both want to come. Lynn & Joni makes six for sure. Then we need to find out if people want to come from some Midwestern states further afield like IowaCindy, Horsegal, NancyAB, Nandy, TPPJ, Robertin.
BTW...anybody allergic to cats?!!
Mizsissy
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