May 2010 Chemo
Comments
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Kim: I second what denise said, Your words are so heartwarming and I am sure Jenn was so appreciative. What a wonderful unselfish gesture.
Denise: does your lymphedema act up when it is hotter? I think mine does for sure. It also seems to swell alot on saturdays. I think that is because I do extra errands and things around the house. Grrrr...If I knew what I know now I would of never ever let them take out any of my nodes. I would of just let the chemo kill it off in the nodes.. This is a terrible reminder every day of this stupid disease. Going to Jamaica in August with my friends so will have to bring along the sleeve. I am going to use it for flying and hopefully not have to use it at all for the 5 day trip, Do you wrap at all?
Hair update: I got it straightened last month and so far so good. I will say the past week that the back of my hair is becoming wavy. This is more like my natural hair. I don't think anything chemical or not can calm down those dang curls chemo gives you.
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Yea the warm weather does make it act up I just had my arms wrapped today I feel like the robot from Lost in Space...Danger will Robin! My arms have been swollen for about a month I was hopping it was the shingles that brought it on but , it hasn't gone down .. so here I sit with my arm wrapped up like a mummy... looking forward to having my blouses fit correctly..at the arms that is..
Have the air on very high because I'm hot...son and husband should be home soon and they will freeze in the house but they can put on a sweater... I'm the Queen right now! lol I go back tomorrow to get them re-wrapped and this will go on for the next 2 weeks...
I was so bad this weekend.. I figured I'm puffy all ready so I had Chinese food and then popcorn at the ball game.. lol talk about self destructive...but it was good! real good!
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Dropped my girls off at Camp Kesem yesterday (for kids w/parents who've had cancer). No kids until Sunday!!! This is the most amazing experience for my girls. Their first sleep-away camp and the counselors (all Stanford students) are wonderful. They even called me today to tell me how well my girls were doing: "Every time I see them they have big smiles on their faces. Emma is doing all the crafty stuff and Abby is doing all the sporty stuff." YEP, those are my identical twins!
After dropping them off yesterday I went to a breakfast with about 20 of the parents. We all introduced ourselves and I was quite saddened to learn that a number of them had lost their spouses to cancer. There were a few who went through the cancer experiences alone because they were single parents. Some children being raised by grandparents because both parents had passed. I can't imagine how hard those situations are.
When I first found out that kids could attend this camp every year until they were half way through high school, I wondered why they didn't just let them come for one year and then offer the camp to a new batch of kids. One of the moms told me yesterday that the reason is that the kids need something to look forward to every year -- no matter what is happening within their families they can count on this week of fun and comraderie. What a blessing.
I was hoping that DH and I could take a couple of days this week and go away, but he is free-lance and now working so we need the money more than we need the time away. So I am trying to organize my girls' room and closet. I've ordered shelving and bins to put their massive amounts of 'stuff' in. Having the carpets cleaned, going to the gym, getting ready for our big road trip that begins next week, cleaning out the van. Yes, ladies -- I know how to live!
I hear you ladies lamenting about the curls while I scheduled my 2nd trim for tomorrow and am very sad to say that my curls will probably be gone after this. "You can't always get what you want."
Love you ladies. You are among the strongest people I know.
Jen
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Hey ladies,
sorry for being away for some time, but I have been busy - went to Oxford on a scientific meeting and then worked on getting ready for the Night at the Library. It was part of the annual Museum Night in Prague and our institute got the chance to present itself at the Technical Library. We brought some fun stuff for the general public - showed people how to calculate the speed of light using slices of bread, margarine and a microwave oven or took their DNA samples for instance. We stayed from 7 am until midnight and were surprised how many people came visiting. The library had a very nice program - apart from universities and us presenting themselves there was a concert of the Academic orchestra, exhibitions and a tea room.
I have been following you all this time though, so I know about your whereabouts :-).
Kim, you are such an inspirational person and your gesture towards Jenn was simply terrific!
Jenn, I'm thinking of you always and keeping you in my prayers. I know it's tough, but you're a strong woman and I'm sure you're show those docs who's the boss ;-)
Denise, glad to know your shingles are gone, my Mum had them about 15 yrs ago in her leg and was hurting for a long, long time, so I have an idea of what you've been through. Hope your LE will go away too - yes, hot weather is of no help right now. I don't have it as yet, but my breast and my armpit is sometimes a little swollen, so I'm curious about what will come up next.
Jen, that's great about the camp your daughters went to (and yes, you three are great beauties :-) ). Have some time for yourself, you need it!
As for hair, mine is curlier that ever - the trim I had a month ago made me looked a little more pulled together for a while, but not long. Anyway, I get compliments about my 'do, so I'm happy with whatever there is, as long as it's my hair!
Sorry if I missed someone in this post, but I'm thinking of you all and sending a big warm hug to each of you!
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Hi Ladies, Just checking in.....
Kim - You're wonderful!! And Jen, you're in my prayers every day
Denise & NJB - my lymphadema definitely acts up when it's warmer. I originally only had it in my hand and wrist but it has now traveled up my arm. Having trouble with my shirt sleeves fitting properly too. Honestly, there are days that this alone throws me over the edge and can bring me to tears - so unfair!!!! whine, whine whine.....
Jen - I'm so glad the girls are enjoying camp. Keep us posted - my kids are interested in going next year.
Madjula - The Museum Night sounds so cool!!
My hair is driving me crazy!!! This is also enough to bring me to tears (and often does!) The sides are growing faster than the top so I look like a curly haired princess leia - I have to put so much product in it just to keep it "tamed". I think I actually prefer my crew cut to this.
Anyway..... I hope all is well. Great big hugs to each of you
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Summer, I'll keep you posted on the camp reviews. We pick the girls up on Sunday and leave for vacation on Tuesday, so I'll PM you on Monday if it's not too crazy. It looks like the closest one to you is in Boston through MIT. They don't have their camp until August, so you might try to contact them. It's possible you could get your kids in for this year. Keep checking the website for Camp Kesem and you will see if a new camp is opening closer to you. They got a big grant from the Live Strong foundation and will be starting 12 or more new camps soon.
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Jen, I did look into the one in Boston a few months ago but it coincides with a vacation we had planned back in December! The kids were bummed but I will def. check to see where they may be opening new ones. Thanks!
Enjoy your vacation
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Just a quick note for everyone, I had a CT scan done on Thursday and the results came back yesterday. Not good. The tumours are continuing to grow in my liver and there are more lymphnodes affected. This means that the chemo I'm on isn't working. Time to switch it up. I'll find out on Monday, probably in a phone consult with my oncologist that I'll start a differernt chemo this week.
Crap I hate this disease. Haven't we had enough already?
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Hi Ladies, been away for a bit, very busy at work and still feeling the exhaustion from the rdiation pneumonitis.
Library Jenn, I am so sorry for hat you are forced to be going through, it really is just so unfair. I know as hard aa it gets you will keep up the fight. We are all praying for you, daily!
Packjen, what a wonderful experience for your children, how nice that you found it.
Njbhwgrl, you are so right nothing helps the curls. My hair dresser said eventually I will get my natural hair back, which was perfectly straight. I used to hate it, but this wave is so hard for me to get used to....
Madjula, wow the museums sound like it was wonderful!
Hope everyone has a great week...love to all! -
LibraryJenn: I am sorry to hear about the CT scan -- prayers still going strong. Praying your doctor will get you started right away with treatment that will stop the tumor growth. Has there been any discussion about removal of the tumors from the liver or radiation to that area to decrease the tumor? I am not of a medical background so I am just blindly asking questions here. And yes, enough is enough. Please know you are in my thoughts and prayers daily -- along with your precious son and husband. Life sometimes hits below the belt and this is one of those times when it is hitting unfairly. Please keep up a positive attitude about your own well being and eating right and pushing forward on treatments. KEEP fighting and never stop! I know that is much easier said than done at times! I know it must be very scary and depressing as well. I think of your age and the question WHY -- if anyone gets this junk -- why those of such youth? But we all know that trying to make cancer logical is an illogical thought anyway. It is a disease that has no logic or reason. Please grab the gusto of each day that you can and know that you are loved -- even by us wacky ladies who have done the BALD LADY dance together. HUGS to you! Only wish I could do something to help -- knowing that I think of you often and pray that your body be replenished with healthy cells to stomp out the cancer cells. Praying for that right chemo mix to cure those cells. Let us know if you need anything! MUCH LOVE! Kim
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summer: I so know how you feel. you hate to complain but why does it never end. Do you see therapist or is it just mild case?
Jenn: thanks for updating us and know you are always in all our thoughts and prayers. How is Connor and your husband doing? Are you still home? I hope so...
PackJen: Went to Vinnie's this past Friday. Had the tattoos done. He is a wonderful person. Very caring and very meticulous. I mentioned you and he said "yes" he knew 4 of you were coming in the same day. The store is in a small strip mall and about a mile away is a mall and restaurants. My tatoos took about an hour and half. Just thinking that rather than sit around waiting for your turn you can go shopping and just switch people up. I was very happy with the results. There is a slight chance i might go back and make them a tad bit darker. I am going to wait a week and see. It was only a 3 hour ride for me. I went home the same night. Any questions please pm me...
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Summer38: Flipping around reading information -- I saw where you posted sorry -- she will be missed about JustPayton back around May 20th. Is it okay to ask what happen?
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Hi everyone, saw my radiologist today, first time in six months. She said everything looks good. She said she was very surprised I had the radiation pneumonitis, only 1-9 chance in me getting it. At least it is better, finally stopped the prednisone on Monday. Hope to get rid of this "moon face" soon...love to all.
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Nanaof2: Doing the happy dance that you are stopping the prenisone -- I've heard via another friend years ago that it is a nasty drug to have to take! (She had called it the "evil" drug.) And she too had complained about a "moon face." HAPPY HAPPY DANCE!
I go Monday for my "follow up" diagnosis on the left (bad) breast and a routine check on the right. Prayerfully, the left one will show the same "uncertainty" as it did 3 months ago which means that the scar tissue is what clouds up getting "clear picture." Oncologist had said that is what we go by. Otherwise I suppose a sonogram or more will have to be taken. I feel 99.9% it will be the same looking -- scar tissue that had built up after the last surgery! Praying everyone else who is /has been on this board is doing well! I'm so happy to be out doing yard work this summer instead of the sad chemo dance that I allowed myself to get a bad case of poison ivy on my legs. OH well! I'll take a bad case of poison ivy over the chemo walk any day! HUGS to everyone! LibraryJenn: extra prayers / thoughts about you / your son Conner and hubby Cam -- daily keeping a positive prayer of healing for you and uplifting your family as well! Much love! -
NJB - I did see a therapist for a while for the lymphadema in my hand. It has now progressed up my arm so I know I need to go back but I'm looking for someone closer to me - kind of procrastinating, if I don't go maybe it's not real! Congrats on the nips!
Kim - With regard to Justpayton, as far as I can tell she had some significant and painfull progression back in Feb but that is really all I know. Good luck on Monday!
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Summer Get your lymphedema checked soon, I kept putting it off and now I have been wrapped up like the mummy, to get my arm back to size.. only one more day(after 2 weeks ) for me to go then, I will never not wear my compression sleeves when working with my arms again.. this is friggen uncomfortable..it has been over 100 out side these past couple of days and I am so hot! I was gonna put up a picture but cant seem to get it right. Did they measure you for compression sleeves? Also the wrong sleeves can make it more uncomfortable.. My left arm is good only have to wear the sleeve and it goes down but the right was couple of cm bigger, just enough to make it very uncomfortable ..yea shirt sleeve just don't fit right then..
Went for my blood test yesterday for tumor markers and such, so start the couple of weeks of Doc appointment ..ONC. Surgeon, Radiologist, Gastrlogist and Astrologist , Just kidding on the last one! and when its all done I have my Reg Yearly Physical with the reg Physician.. lol seem redundant to see him now..
Have a Great Weekend Ladies!
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Denise and Summer: I hate wearing the sleeve....It is so offensive. such a damn reminder...
I went to the gym 3x this week. Normally I work out with 8 lb weights..The first two times I worked out wth 1lb. weights...was so ridiculous. then went to 2lb weights...well sure enough the next day my right arm swelled like a banchee....So PISSED me off...okay yes....I said it...PISSED off..
I have been following the articles on node replacements. Hoping they come up with a solution soon cause this swelling just stinks!!!
LibraryJen: how are you doing?
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Denise, Summer and Njbhwgirl: Are you ladies having the issues because of lymph node removal. My oncologist took only what he called the sentinel one and fortunately, it was clean. I did have about 4 months there where my arm and that side was very "stiff" but after talking with a friend who works out -- she encouraged me to help push that arm and work out some of what I was encountering and it did work. But I know the lymphedema is a much more complex picture -- causing the arm to swell and all. Yes, do keep it checked out and don't let yourself suffer needlessly. I know that I am very lucky to have had only the one removed because I think they have learned within recent years to try not to remove them if they don't have to due to what you are experiencing. (At one point, I think they just radically removed alot of them years ago -- not thinking of the purpose they serve!)
Summer: Thanks for letting me know about PackJen. I see where she has been removed completely from our posting and I was just so concerned. I know she had some tough battles and will keep her in my thoughts and prayers -- she is young and has a young son as well. Hate it for any of us -- but really hate it for the ladies who have children of any young age. I just want everyone to be healed and moving back into the lane of living LIFE without these issues! Life has enough issues!
LibraryJenn: We are whispering your name each day for healing and hoping you are indeed resting and getting better. If you are smoking the funny weed, perhaps you are just too chilled to be bothered with our posts -- which is fine!
{Hard to associate "library personality" with "funny weed" -- brings a little laughter to the mind. But then most folks wouldn't have imagined I'd get a tattoo -- so life brings us challenges and we become radically changed to move with the swift moving current that life threw us into. FIGHTERS / SURVIVORS / SISTERS - we all are -- Hugs to you and your family! Sacphotomom: You are a character! Do you think if any of us had gone to an Astrologist and/or hand reader, they might have said -- Hummm, looks like your future is going to be bringing in some RADICAL changes / it is cloudy -- I am seeing alot of white coats / stainless steel tables/ bright lights / then lots and lots of PINK!
Or something like that! (My creative brain isn't working so well!) Thanks for the well wishes on Monday -- I am trying to not focus on it. I go visit with some girlfriends tomorrow -- a retired one has a lake house on Lake Alatoona in North Georgia -- so there will be lots of laughter and that will be nice.
Everyone have a peaceful weekend -- Hugs!
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Hi Ladies! Sorry for the long time since I posted last, I know you are all wondering how I've been doing. I went to my onc. appt. last Tuesday and am now on a different chemo regime. It is an oral chemo that I take with Tykerb which is a cousin to Herceptin. My onc. is hoping that it stops the growth of the tumors too. They have about doubled in size in my liver and there has been no mention of surgery as I believe it is just too much of my liver that is affected. My lungs have also seen much spreading of the cancer. I get out of breath doing very simple things (like walking to the bathroom.) I am taking dilaudid (sp) every 12 hours plus more for breakthrough pain. Luckily everything is covered because of my palliative status, so the only thing I have to pay for is renting the oxygen concentrator (I use it at home but bottled oxygen when I go out.)
I'm good enough to be out at my parents, so that is good. I really needed a change of scenery. Cam is busy playing fastball this weekend and it was great that my mom was off this weekend to watch Connor (and I.) My dad is great with Connor, most of the time. Sometimes he needs a little reminding that Connor is only 3 and can't be left unsupervised for very long at a time, especially outside. We are going to see a lot of family tonight as my mom's side of the family has a burial of ashes today (it was my great aunt and she was 102 when she passed.) Itwill be a celbration of life more than anything.
I also went and saw an alternative doctor on Tuesday. He was pretty interesting. He believes as well that the cancer is related to a drug that I took for Crohn's disease that lowered my immune system beyond repair. He has me taking drops of god knows what that I mix in my water bottle three tiems a day. Weird thing is that when I'm drinking it I breathe better. He believes that my immune system needs to be "restarted" and this will do it so that it will recognize and kill cancer cells again. Whatever, I'll try it!
Hope everyone is having a great weekend,
Jenn
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Jen: I am glad yhou are seeking an alternative doctor. I am hoping the drops will rid you of this dreaded disease. I am encouraged that your breathing is better. And yes a change of scenery is a good thing. Hoping with new chemo you are not exhibiting additional SE's.. Thinking of you every single day.
hugs and kisses
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Hi sisters, I just got home from visiting family in Canada. We were at my brother's cottage and I took a much needed computer break, so am trying to play catch-up now. I'm scheduled for stage 2 recon this Thurs and haven't done anything to prepare. Am seeing my BS at Hopkins today.
I keep running into people who share with my their "recurrence" stories. None of us knows what tomorrow will bring. It reminds me to live in the moment and to have no regrets. I'm seeing a naturopath and am working on cleaning up my diet (still). It's the eliminating bad stuff that's the hard part for me. PCP gave me a Rx for Wellbutrin - it's made a significant difference in my mood and has helped with my energy.
Jen and Jersey, I live so close to Vinnie's. PLEASE let me know when you'll be here - I'd love to meet!!!!
Jenn, you continue to be in my thoughts an prayers DAILY! I have a lot of confidence in alternative drs and have heard some amazing stories! I hope you stick with it and continue to experience healing.
Big hugs to each of you. Daiva
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Daiva: omg was at Vinnie's 2 weeks ago. I wish I had known. I would of definitely had a celebration drink with you. what is your phase 2 part? Do you plan on seeing Vinnie or do you not need him?.. The results were wonderful and if I did not have scars no one would know I had any work done
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Hi all! Glad to hear from LibraryJenn -- sounds like progress is being made to push your body to a better level. Prayers keep going out daily for healing and positive answers for the best treatment working to heal you and get you back out there running with Connor and Cam. Yes, 3 year olds can be so smart and I can see your Dad thinking that he is older than he is. Funny! I think an alternative doctor being a part of the picture is wise too. I think we all can benefit from working on better diets. I know I told myself initially I would and have slacked into lazy food eating and I am with X-ray Girl on any mention of reocurrence or such because it is unnerving. I think we do what our doctors tell us and then we do our part in the healthier living and eating and I need to get plugged into that "eating right" myself! Njbhwgirl: I believe the scars will heal in time to where you really will feel great about that part as well! The small surgery that I had -- the scars are not like I had feared. My follow-up mammogram was yesterday and all looks well. It is scar tissue that is in there due to the surgery and I was also told radiation makes the breast get a level of "rigid" look for about two years even -- happy news. Hugs to you all! LibraryJenn, please keep us posted as we are too far away to give you the hugs we'd like to give you. Give little Connor a hug from your CHEMO SISTERS and take care of yourself -- we are praying forward that your reports will show improvement and healthy you soon! Then perhaps you will have to get a dachshund tattoo as well. LOL {I haven't posted mine yet because selfishly I don't want it copied -- but I think when you get well enough to chase little Connor around and are doing GREAT, I might share a photo with you! Hugs!
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Hey Ladies.. just checking in !.. Had a great past week hiking and viewing the redwoods up in Northern Ca.. so much fun ..felt my strength and stamina back l felt so good.. I was badaon the second day and took my bandages off .. felt so freeing .. and yes NJ I too feel like they are a constant reminder of everything. I am back to wearing my sleaves but not the bandages.. cant stand them any more..
Went for my 4 month visit with the ONC yesterday .. was relieved to hear everything looking normal.. Don't have to go to see her again till Dec. so happy about that. one appointment down 3 more to go! but that is the one that gets me more then anxious . .
Davia I hear you on the reccurance people .. I dont really want to hear all that either.. and I too am trying to be good about what I eat.. but it was hard last week on our trip but getting back to it this week.. congrats on being one step closer to being done! shoot I still have to go through all of that.. but you are giving me hope that it wont take so long to recoup..
Jenn ... Keep up your sprits... we are all praying for you and your family.. Have a great time relaxing and being with family..
My daughter is in town and we are having fun talking about wedding stuff.. she still hasn't set a date but its gonna be next July. and middle to end and she has pick the venue now she has to wait till her choir tour stuff comes through in about a week or so the date can finally be set.. Woo whoo cant wait so all my family will quit asking me when.. lol ..
Have a Fun 4th of July and or a great weekend!
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I was just reading my last post, wow that came out very bad.. The thing about recurrence stories.... I mean to say.. that people who feel the need to tell you about all their Friend of friends, mothers aunts sister ...kinda of people..but at the same time I like to hear the stories of successes..
Have you all had any problems with the radiated side? I have been massaging mine a lot..if someone looked in my window it would look like I was feeling my self up all the time! lol.. will find out next week, if enough.with my visit to the rads doc..it feels soft to the touch now ..not all hard .but still have one ridge I keep working on.. .
Hope everyone is doing great and having a nice day!
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Hi guys!! I'm very far behind.... I've read all the posts, but it's been so long.... sorry, I'm not saying hi to everyone!! We've been busy... had my recon in May; was doing well until the center of the incision dehissed... it's about 2.5 cm wide and relatively deep. I keep packing it twice a day, but 7 weeks post-surgery and it isn't getting better. Not real sure what the next step will be. Haven't really worried about that much though... went for my annual pap; had to have an ultrasound because I had my period for about 5 weeks.... saw some concerning spots on my right ovary and they ran an Ova-1 that was elevated (8.1) ... so off to CT to see if there was cancer there.... there was NOT. Had a repeat ultrasound, this time cysts on the other ovary... all functional; endometrial lining is normal (was thickened at first U/S)... and my CA-125 was 24.5 (normal). So, just follow up with an U/S and blood work in 6 weeks. Also, coming up on my last herceptin infusion July 19th... curious to see if I will have a meltdown being 'done' with treatment... I think herceptin has been my security blanket! I'm hoping to get into the Neratinab (sp?) clinical trial... it's 50/50 drug/placebo, but preliminary studies are looking good for this drug for us Her2+ gals.
Just grappling now with what to do about my ovaries... I don't want to keep looking over my shoulder, but not sure I'm ready for a hysterectomy (I'm 42)... but IF I ever developed anything there..... well, you know... I could have prevented it, right?? Anyone's take on this to help me would be much, much appreciated!!!!!!
Jenn - hey sweetie... I'm keeping up with you on facebook and here... hope your new water drops are helping you feel better! I think of you a lot and am so impressed with your awesome attitude and grace!!
Love you!! -
Hey! where has everyone been? All on vacay?????lol
LIBRARYJENN: How are you.. Can you update us on what is going on?
Leanna9: glad to here from you. Seems like your winding down as well. I don't have an opinion on your ovaries. I would ask your doctors what they think. I know hot flashes are no fun. I have been having them for years now..
Denise: YEAH for good report.. glad you had good time hiking. Hey.. I thought I read somewhere that people with LE should not wear an underwire bra? what have you read?
Kim: glad your report was good as well..
I actually forget when my next appt with onc. is.. I have to go check... Quite frankly I am happy that I forgot.
Love to all of you
Hope your enjoying the month
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Hey all if you get a chance to watch this on tv -- it is awesome! I just finished watching it tonight on a channel that is called Style -- http://www.mystyle.com/mystyle/shows/styleexposed/ -- iIt about young women with breast cancer and it totally tells the story!
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Big hugs to you, my warrior sisters! I will try to post this weekend. Just wanted to let you know I'm thinking of you! Life is busy with the kids home this summer!!!! Will be back soon.... Daiva
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Has anyone heard from LibraryJenn? I'm just concerned about her. Hoping everyone is at a good place right now! Hugs!
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