Starting Chemo April 2009
Comments
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Thanks for letting us know Helen, good that it is behind you at least.
Hugs to all, Judy x
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Hello ladies, hope everyone is well, has been quiet here for a couple of days...
Wishing you all a good weekend! Hugs, Judy x
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All fine here. My husband had a stress test last week (routine). I was pretty sure it would be fine, but it was a bit of a nagging worry. They called today and all is fine.
My daughter decided NOT to find out the sex of the baby. The midwife said not knowing provides 'good motivation' during labor. I almost started laughing. Isn't labor motivation ENOUGH all by itself? But I didn't say a word. I can easily wait till June to find out. That is what EVERYBODY did back when I had kids.
Cold, damp and rainy here. As soon as the holidays pass, I am so ready for Spring to come. Unfortunately, it will be a few months yet.
Am looking forward to a relaxing weekend. Lots of football.
Hope all is well with everyone.
Love, Amy -
Hi all,
Just wated to say hello - not much new, which I have learned can be a good thing! Helen - have you heard anything on your MRI? Leslie, how is your recovery coming?
Hope everyone is ok - me, I'm just hibernating for now.
Geri -
Nothing new here. Had MRI but have not heard back yet about results. Just trying to get through each day but needing painkillers to do so. Hope all,of you are doing ok.
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Amy, good to hear that all is fine with your husband, I completely understand the worry. Hope your daughter is feeling well, you must all be very excited.
Geri, I wish I was hibernating! We are having such a cold winter here this year, I don't remember anything quite like it. the homes are not built for it, they are made of stone and the floors are cold, which is great for the hot summers...Hope all is well with you
.Helen, hope you get your results soon and start to feel better.
Lesley, how are you doing? I hope you are feeling better with each day.
I am ok, the weekend was fun, back to work today though
...Hope everyone is doing ok.
Stay warm and have a good Sunday! Hugs to you all, Judy x
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Ok...am I the only one that didn't get a wig? I tried it on once for about five minutes and I couldn't handle it. I returned it right away.
My hair after four years is finally getting back to sort of normal. This week I actually made an appointment with my old hairdresser. I have been going to Super Cuts as I could never predict when my hair needs cutting. It seems to be growing again, much thinner and slower but I have nothing to complain about. No more curls.
.I had to have more blood work on Friday as my tests three weeks ago showed extremely low in potassium. So I've been on a rx for three weeks to boost it. Dang if it's not always something.
I feel fat and sassy. Still working on losing weight. Nothing seems to work. I think it's my activity level. I plan to up my days at the gym to four. I need to get into that "I must go to the gym to feel good" mind set again. I've actually eased off the leg compression recently and this year during my busy time at work I did not need arm compression. Doing the happy dance!!!!!
For me it's one year out from my last bout of cancer, so my count is off. I still have to go to one onc every three months and the other every six months.
Hugs to all.
Betsy
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Looks like a missed the past couple of pages of posts. Errk...Oh well...that's par for me. Better late then never!
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Always good to hear from you Betsy, let us know how the blood work goes. Good news on the leg and arm compression
.I am excercising 4 times a week and I am telling myself that it is for my health and not necessarily to lose weight, because that certainly does not seem to be happening LOL! I wanted to wear jeans from last year yesterday, it was a struggle to close the button, I was not happy...I am trying not to be obsessive about it, but it is hard. I have enough to deal with on the physical front, still, we need to count our blessings, right?
Hugs to everyone, have a good week, Judy x
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Hi ladies. Glad I did not miss Helen's results. I go to an adventure & environmental film fest every year and it was this past weekend. It was great. A girlfriend from Chicago flew in and went with us and loved it.
Did more walking than I have post op felt good got a bit tired at the end of te day. All my drains are out so I could switch to this Marena post op garment I bought that everyone raves about. Seriously it is worth EVERY cent I would kiss the inventor if I met them : ). Still have 2 months of compression during the day but I am fre at night - what a feeling.
Shape is starting to look really nice but I would not even attempt jeans yet so stay tuned for that.
We are in a DEEP freeze in the Sierra and I am breaking down and getting the flu shot tomorrow! Have you seen the maps? Holy Hannah 2013 is the year of the flu.
Thanks for checking on me!
Lesley -
Lesley - all your news sounds great, especially the film fest. i truly believe those special things we go and do (and with the people we love) are what give our lives significance and meaning and make lasting memories. Glad you could go and enjoy.
And YES to the flu shot. It is a HUGE epidemic around here. I got my shot a month ago, and while it is no guarantee, it does give me a measure of confidence. My mom (80) just called this morning - she got the shot AND ended up with the flu anyway, but seems to be a lighter case, perhaps thanks to the shot. She's also taking Tamiflu which is helping.
The midwife INSISTED that my pregnant daughter get the shot. She said that pregnant women can DIE from the flu. Yikes. So she did go get it, and now is glad. I cannot remember a year this bad - seems like almost everyone has it, or knows those who do.
Judy - is the flu prevalent in Israel or is it mainly a US thing? How about Canada, Helen?Everybody stay healthy. We've been through ENOUGH!
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It is also a bad year here for flu. Many cases and many people hospitalized. I am glad I had the shot as well.
Got my MRI results today. So it is an atypical cyst. But I'm upset as my family doctor says it takes a year to see a neurosurgeon. I guess this is a Canadian problem but I have never experienced this before. Apparently there are not enough neurosurgeons around. My family doc said I could take more Oxycodone and she is sending me to a Pain Clinic but I'm not happy. Don't see why I have to learn to manage pain when there could be an easy solution. My rheumatologist has said he will get me in with a doctor. In the meantime, this is depressing. -
Lesley, good to hear that you are out and about and doing fun things that you enjoy! Keep us posted on your progress.
Amy, there is a lot of flu here, we have all had our shots and hope for the best. Both my girls have had mild flus over the past few weeks. Hope your mother feels better soon.
Helen, so sorry that you are having such a challenging time. I hope that you can see a doctor sooner than a year, there is no reason why you should be suffering like this. As Amy says, we have been through enough. Please keep us posted and in the meantime, I hope you are managing the pain as best as you can. Sending you (((hugs))) to help lift your depression a little.
Have a good day everyone, hugs, Judy x
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Hi, ladies. Checking in - sorry it's so random and sporadic - I hop on as my schedule permits. Glad to see everyone is doing well - Helen, wishing you can get some relief and not have to wait a whole year!
Betsy, I did wigs, but briefly. I couldn't deal with how hot they made my head (it was May/June/July here in Florida, where it's not only incredibly hot but incredibly humid and I was struggling with sweating, etc. would literally rip it off my head as soon as I got in the car). I switched over to bandanas as soon as I could and then bareheaded. Again, blame the heat - it was just too darn hot, even for hats.
Had my 6 mo checkup with the breast surgeon - everything is good. I guess he'll continue with the 6 mos schedule until I hit 5 years. Can you believe we are coming up on our 4 years or some have already hit that? Incredible. Really is a blessing.
Working hard - still traveling a lot - headed to Vegas next week for a conference. Family is good and I've been feeling great except for the twinges and tweaks, of course. Turned 50 in December and I swear my knees decided okay, it's time to start hurting. Trying not to let it slow me down and continue my exercise program and hubby and I are both making an effort to eat much better (he's the dessert king).
Hugs to everyone.
Michele
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Michele!!! Thanks for checking in. Thanks Judy and Amy!!!
Helen, well as we all know too well there is nothing to say but darn it. I really wish you the best of luck at getting moved up the list for a quicker appointment. You have had some rough times and it is not fair.
All this sure changed my life. Some people get cancer and if they were cautious prior to diagnosis are inspired to get out and live more. In my case I was pretty adventurous, whitewater kayaking and rafting, rock and ice climbing, mountaineering, and racing 40ft sailboats. NOW I went the other direction. I have been laid up in one way or another for the past three years that I am MORE cautious. I don't want to get hurt and be laid up...crazy huh. Since I was BRCA positive I did have the double oopherectomy too and then the crazy reconstruction odyssey so 9 surgeries since Aug 2009.
I guess what I am trying to say is I wish I could literally fly in and hug anyone having any challenges health wise. Cancer forever changes us and takes pieces of us away. It does not just end when chemo ends and we all have varying reactions to Tamoxifen, Arimidex, Herceptin, whatever longer term therapies we may need to keep the beast at bay.
Not being negative, our lives can go on and we can reclaim quite a bit of our old self, but it really is never the same at a level that no one who has not been through it can understand, we probably never anticipated it ourselves. The term new normal is true but one I still on certain days find difficult to accept, but certainly better than the alternative!!!
Hope you all have a terrific week!!!
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Lesley - very interesting perspective. Thanks for sharing it. I wonder if in some ways, your bc experience made you a little more aware of your body's vulnerabilities. You surely did some adventurous things previously. And I hope you are able to go back to them (or at least modified versions).
So today, I was on the road seeing clients and stuff all day. I stopped in a furniture store to look at a little piece I was thinking about buying. The store has Amish made furn and is staffed by Amish young women. So there was only one woman there, and she was HACKING and COUGHING unbelievably. She CLEARLY had the flu or a terrible cold. I asked a few questions, and when I saw how sick she was, I practically RAN out into the parking lot to get away from her. It was pretty funny, but I couldn't believe she was working, as sick as she is, and with the public! Yuck.
But I have some exciting news. I am going to put it in a separate post......
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BIG NEWS: So you know how I launched the website for my children's hospital back in the fall. Well, a % of sales is donated to the hospital's fund. Apparently the money is really adding up. So today I had lunch with one of the women from the fund. She told me how thrilled they are at the amount of the donations (and this is only the 5th month so far!) and that because of the amount, I can direct the fund to have SOMETHING NAMED AFTER ME! Like she said a bench in their garden area, or a garden sculpture or EVEN A CLASSROOM. How amazing is that!!!!
When i was newly diagnosed and sure I would die, I used to think that I didn't want a grave for my kids to visit but rather wanted a bench somewhere for them to remember me, if they wanted to. And I was always very attached to the idea of a bench. And now I get to have a bench named after me AND LIVE TO SEE IT! Isn't that amazing?
We are not wealthy people and I would NEVER normally be able to endow something like this by an outright donation. I am so thrilled & excited to be able to have this oppty. When she told me, my heart started racing so fast, I was so excited. I said that I doubted most of their donors were as excited as I was, but it just was such a surprise and meant so much to me.It won't happen immediately as there are some details to work out, and they are still constructing the new wing of the hospital (and surrounding areas) but it WILL happen.
Isn't that so exciting? You sure never know what surprises lie up ahead. I hope for all of you those surprises are GOOD ONES!
PS - Helen - see if they can put you on a cancellation list with the neuro. Sometimes people cancel, and if your schedule is flexible, and you can be there on short notice, often they can fit you in a lot sooner. I called a doctor recently and asked for an appt and they said it was a month's wait, but then they said "Oh she has a cancellation THIS AFTERNOON"- i grabbed it and got to go in that same day. This might work for you.
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Amy awesome news!! You will have to post a pic when it is all set up! You are making a difference and that is what counts!!!!
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Michele, so good to hear from you and Happy Birthday! Glad your check up was good!
Lesley you really do have an interesting perspective on life, but I agree with Amy, I think that BC has shown us how vulnerable our bodies can be. I haven't met you personally, but I think you will get back to all your fun activities one day. But there is no doubt that cancer changes us, I don't think we ever go back to how we were before.
Amy! Great news! Well done you! You are making a difference and we look forward to hearing all about it as it happens.
Helen, how are you doing?
To everyone else, hope all is well. Take care all of you, hugs, Judy x
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While cancer took some pieces away I have also gained too. Part of it may be diagnosed at 40. I was not ready to slow down, have zero hormones and be thrown in to immediate menopause at 40. I felt like I was just starting to really feel alive, after 35 I was more comfortable in my own skin than I was at 25.
I think there is a natural process of slowing down as we age. It is just a bit of a shock when you immediately hit the brakes, but the reality is that I have so much more internal peace now. I rearranged my priorities, I live in the moment, and I really do not sweat the small stuff anymore.
It is a process, coming to terms with my new normal. Like most of life there are trade-offs. Of course I certainly wish it had not taken cancer to get here, but when I am with other women my age with kids talking about squabbles in their families and lots of things that seem really important to them but really are the petty little things I do just sigh(to myself) with relief. I would never minimize other people's challenges. For example in the past if my sisters were squabbling or my sister was really mad at my mother for something like babysitting more for one sibling's children than anothers or just day to day "stuff" she could call me and get me all worked up, but now I just release all of it. I do not take on other people's stress and problems. I probably never should have anyway, but I have matured and grown.
THAT part of the new normal I embrace!!!!
I hope the previous post did not come across negative. I just had a friend tell me she hopes that she never has to walk the road I walked but if she ever does she hopes she can do it with half as much positive attitude, smiles, and grace as I did. Made me cry. I think I just feel more safe being vulnerable with all of you. Any woman who has never had breast cancer that might someday, I try probably too hard to be a hero, because I would hate to think that any of my whining or moping would be what someone would remember if they were diagnosed down the road and they would be afraid because of me. I guess I always wanted women, if they, or one of their friends were diagnosed, to be able to say that they knew this woman Lesley who was 40 with stage 3, traveled a tough road and she got through it, so can they. Make sense????
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Absolutely makes sense, Lesley. Lots to think about.
So after my good exciting day yest, I started spotting again (bleeding, really) last night. My heart just plummeted when I saw it. So I took a deep breath and called the doc, she wants an ultrasound tomorrow and to meet her NEXT Friday for the results and to figure out what to do.
I was pretty devestated initially, but once I made the call and KNEW they'd put me on the testing/appointment merry go round again, I am sort of resigned to it. Feel crampy and lousy. My husband said "I'm sure it's nothing" too many times and that didn't go over well. Even if it WILL be nothing, it isn't nothing now. It's more medical stuff - again. Sigh.
Not a good day here. But I am (fairly) determined not to let it dominate and ruin the entire next week while waiting to see the results.
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Amy, such an amazing thing to have a bench (or anything) named after you. Wonderful .. and you deserve the honour greatly. My rheumatologist said he will try to get me in to see someone sooner and I plan to call tomorrow myself and will hope for a cancellation. The constant pain is wearing me down.
Saw MO today and we have decided that i will stay on the AI as it is more effective than Tamoxifen for me. She commented that at 4 years clear of cancer, the odds improve that there will not be a recurrence. I asked about women who have recurrences after 5 years - and she said that while it happens, it is rare. I hope she is right - for all of our sakes.
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Definitely makes sense Lesley...
Amy, sorry you are on the merry go round again...please keep us posted. I am sure you are not feeling your best, you know we are all here for you (((hugs))).
Helen, let us know if you have any luck with the appointment.
Work is so crazy today, must run. Hugs to everyone, Judy x
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Had ultrasound. So much blood all over the place, it was like I was a shooting victim or something. Tech said i was a 'biohazard.' Doc appt moved up to Tues, so i will have results then.
Geez.
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Grrrr Amy keep us posted. Seriously I think we should have a "get out of future hospital visits" free card like Monopoly "get out of jail free" card after cancer : ) If only Parker Brothers was in charge of life...............
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Hi Ladies,
It's been awhile since I've been on here. I started on the April 2009 board then really had to take a break when 2010 rolled around. I had a recurrence on August of 2012 and started chemo in September 2012, thus joining the Sept 2012 forum. I just finished 6 rounds of FEC yesterday. Surgery to remove the tumors (localized recurrence) is in 5-8 weeks, them radiation for 6 weeks. Can anyone who has done radiation tell me what to expect and what things you recommend putting on your skin? Thanks so much.
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Florbo
Everyone is different in terms of how your skin holds up. Check with your team for what you can use topically because there are mixed opinions on that too. I did radiation over 30 regular treatments and then a few boosts. The actual process is a breeze, you just lay there very still for a minute then you leave. Basically it takes more time to get undressed and dressed than the treatment. It is a pain, not physically, because it is usually 5 days a week so more inconvenient than anything.
As the treatment progresses, after 20-25 treatments you do feel a bit tired or fatigued later in the day and I did take a nap the last couple weeks.
My skin held up really well just getting a bit red like a bad sunburn at the end. I never blistered or turned black, I did get a little itchy.
Sorry to hear of your recurrence but glad you are almost to the other side!
Lesley -
Amy, really thinking about you today. I hope you manage to have a restful weekend. Sending love.
Florbo, nice to meet you! I didn't have radiation so cannot help you with that. But really hope that you are doing ok and getting to the other side as best you can. Sorry that you had to go through this more than once.
Helen, Geri, Lesley, Titan, Betsy, Chelev and anyone I may not have mentioned...Hope all is well and wishing everyone a good weekend!
Hugs to you all, Judy x
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Amy - I'm glad for you that they moved the appointment up, and hopefully this will not turn out to be anything serious. We are all tired of watching for the concerns after a cancer diagnosis. I just had a hip x-ray done on Saturday because I have been having pain in that area for a few months. I asked my GP to order it because I didn't want to go to the oncologist and hear the words "bone scan" and have to wait and worry again. I'm sure this will turn out to be arthritis and I can avoid all the concerned looks at the onc's office.
Helen - did I miss anything, or did you hear about your back/hip pain? Are you still suffering without the proper pain management? You should cross the border and come to a hospital ER in the US and get pain medication. We are not allowed to turn anyone away who needs emergency treatment. I know that's a radical idea, but I hate to hear of anyone in pain when it isn't necessary.
Florbo, I'm sorry we are hearing from you because of the recurrance, but you will find wonderful, supportive women here. This group has been a life-line for me, and we are all here for you as well. Like Judy, I also did not have radiation (bilateral mastectomy) so I am unable to offer you any practical help on that front, but you will get help from others, like Lesley, who have had radiation.
Titan, Betsy, Chelev how are you all doing? Judy - I can always count on seeing a post from you when I sign on...so comforting!
Hope everyone is doing well
Geri
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Florbo, welcome back but sorry that you have had to go through a recurrence. I had rads - two times. Compared to chemo, it was a walk in the park. I used the Glaxol base cream and it was effective in keeping me from burning badly. I didn't even get very fatigued but I was careful.
Geri, thanks for the suggestions. My doctors have been very attentive and I have as much pain meds as I need. Both my GP and my rheumatologist are taking very good care of me. I have an appointment at at Pain Clinic this Friday. But here is where our system has a failure - it is very difficult to get an appointment with a neurosurgeon - takes months and months. But my rheumatologist has taken it upon himself to make contact with colleagues on a personal level and there is an excellent neurosurgeon who has agreed to see me within the next few weeks. It would be ideal if I could be seen within days but I'll accept this. I don't need approval from any insurance company - it's just that the neurosurgeons are very busy. As far as the pain meds, if I didn't have a GP, I could also go to a walk in clinic or an ER here and they would give me meds as well but fortunately I didn't need to go that route. In terms of diagnostics ... my GP ordered the CT and it was done within about 2 days. The CT recommended MRI and once the paperwork was sent in, I had it within 1 business day. The only real wait was 1 week for the report from the MRI. Basically if a doctor orders a test or treatment, it gets done. I'm glad I had the bone scan done first as once I knew it wasn't a cancer recurrence, I knew it would be something that could be dealt with. So there is a 1 cm cyst there that is causing all of this problem.
Geri, I hope your bone/hip pain is nothing more than arthritis. Interesting that we now consider this good news.
Amy, please let us know what is happening and how you are doing. Wishing that this gets resolved quickly.
Now that I have watched Downton Abby, it's time to go to sleep. Hope everyone is keeping well.
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