May 2010 Chemo

Hi All:  been awhile for me. Unfortunately I caught what I thought was a cold and fever this past Thursday. I was so out of breath I could not walk across a room without sitting down Went to GP on Friday who called my onc. and they put me in the hospital. fever was 101.5. After zillion blood tests, cat scans, it was determined it was some type of lung infection. It was on the upper lobes so they said no danger. There main concern was a blood clot which they did not find.  Okay now it is Saturday and I am fighting to go home. Fever down....but all test results not in. I want to go home to spend Sunday with my son who was leaving for boot camp on Monday. My onc. comes in and says I cannot guarantee I will let you leave.  Well...I cried and cried all Saturday...BUT they let me out....with antibiotics for 10 days

My friends and family cooked cleaned and set up the whole party for my son on Sunday. I had 70 people at the house. I would just rest in bed for half hour, then come downstairs and sit with guests. My son was so happy and I was too.  So thats the good part of the story.

I had so many posts to catch up on so sorry if I cannot remember everyone's stories.  

sacophotomom: I am around till end of August. have 2 more treatments to go...boy that sounds so much better than 8.

For all suffering with joint pain on Taxol.  I do to but not so bad. I am fortunate enough to be able to take arthrotec which is for my arthrits and it so really helps.

For all GI problems, My onc . put me on Nexium and omg it so really helps..Maybe it will help you too.  I always get saline drip with benadryl..I have been fortunate to not have the burning sensation .

Leanna:  BigWheels...how I remember them....so cute

x ray girl: glad your fever went down and did not have to go to hospital ..happy for you

Okay I created a long enough post ...For all those who I missed.sorry.  and have one last question

Has anyone lost their eyebrows or eyelashes yet. Mine are thinner(and believe you me they were so thin to begin with) but not totally gone. Does anyone know if you lose this last or am I safe with 2 more treatments to go?

Paxton - Glad you got to go to the beach.  I always feel bad if I spend time in the sun/heat.  I've taken B12 for neuropathy... but again, can't say if that works for everyone, but mine went away.  And, wow, that is scary about the Avastin.. I was hoping to get into that clinical trial, but was HER2+.  I thought I wanted that drug.  Did they say why? 

Daiva - Yes, if your blood counts are low enough (neutrophils), only canned fruits should be consumed.    Sucks, I know.  You know what though.... I was thinking of Day too, and thinking she should be in cancer research and find a cure for this!!!  And, speaking to the mortality subject... yes (see further down in my post also).  Reading the stats on BC are so incredibly sobering... it's hard to explain to other people, but I think you have to be honest.  My friend asked me about it today, and I just told him that BC is a nasty beast with high recurrence rates (most people do not know), so we hope for the best!  I'm sorry if it's not appropriate, but yeah, I think about it alot and just hope and pray that I see my children grow up, and hope that the memories we make are great ones.  I want to be a grandmother.   Our kids are close in age... I have a 17 year old daughter, senior in high school, my almost 9 year old.. playing tackle football for the first time this fall, and my 4 year old who is destined to be class clown... he's adorable with his blond hair and blue eyes, and he knows it!  Rotten to the core!  LOL... just like his mom!   

Mel - Hi!  Good to see you.  So glad for no reactions!! 

Summer - YES!  Have one for me! 

Day - Thanks for the info on brocolli sprouts... I'm going to look into that too!  And, my onc. insists on an AND... I had one node test positive, so she said they all have to go.  I am very upset about this, and even asked her, can't you test them during surgery, and not do a full dissection if they come back neg... she said no... boo.  And, I have to ask, if you don't mind... how old are you?  I understand if you don't want to answer... you are very wise, but I have a feeling you are younger than I think. 

Sacphotomom - How have I never hear hydrocodone called Norco???   Yes, that's good stuff!  As for the flowers... I would leave them in the garden.  Also, you should not have direct contact with any soil.  If you have to, wear gloves and wash well after.  I'm sorry about your pain.  That stinks.  I hope they get you something QUICK that works!!!  I've been pretty emotional too...  but it's actually from a letter I got from the Susan Komen Foundation... I have donated previously, and I got my annual address labels and stickers.. and all the 'stats' on breast cancer just really hit home, and I have been a bit down from it. 

Patricia - I'm am so inspired by all you do, I had my husband 'ready' my bike for some cycling.  I don't think running is a good idea right now, in this heat, so I'm going to start cycling again.  And, this time I bought a helmet... for the first time, to set the example for my kids!!    Such a nice story about the applesauce... people are just awesome! 

Hi Laura!    I'm sorry about bone pain - it really is unbearable!  Ugh.  As for the alcohol, I don't think my onc specifically spoke about drinking, but I think I read it in the info sheets on the medications.  I don't, but not because I'm being super-healthy... mostly it's because I feel like I have a hangover most days anyways, and could not fathom adding alcohol to that!  I'm looking forward to having a beer or 5 when I'm done with chemo!  LOL

Jenn - sorry about your onc fill-in.  Doctors can be so insensitive, but I usually chalk it up to the fact that they had their heads in books for so many years, it doesn't leave time to develop bedside manner.  Especially true for oncologists!  But, even though your tumor doesn't 'feel' smaller... it definitely isn't bigger, so something is happening!   And, like you, I talk about my online friends all the time too!  Truly, a blessing.  And, cappucinos that I use to love don't taste the same either... just as well, I guess, ok, I know I don't need the sugar! 

Jersey - Sorry you had to be hospitalized, but that's so great that you were able to get out and be with your son!  And, wow, 70 people!!  I only know 70 people if I include you guys... JK!    Sounds like it was a good time with others taking care of everything!  I still have my eyebrows, but most other hair is gone; I think they are about the last to go.  Also heard that when they come back... your eyelashes will tend to cycle off at the same time for a while as well; until they get out of sync to where you don't notice you are losing a few at a time as is natural. 

So, today (Wednesday), is our anniversary... DH took the day off (after being at his job for all of 2 days... luckily, he went to work with a man who knows him well, and understands the situation and supports him fully), and we have treatment, and then are going to try and eat Japanese after.  I was at a loss of what to buy him, so I bought a yard game we can all play, and dropped off his wedding band to be resized bigger so he can wear it.  He gained a much needed 20-25 pounds since he's been out of work.. up to a whopping 180!   

Question - Anyone else getting pimples??  Really, no hair... random rashes... bloated steroid belly... and zits to boot!  Does it get any better than this?? 

I know we have ladies finishing up... but I hope we can still come here to connect even when we are done with chemo and on to different things.  On this board.. you ARE my gals; the ones I know the best and feel bonded with! 

Hugs, love you guys!

Day - the Brassica Tea is at the health food store called Akins in OKC.  It is located at 63rd and May and I believe there is one on Memorial near SAM'S.  Johns Hopkins recommends breast cancer patients drink it several times a day.  I forget to do that most days and I think it's taste is a little off to me.  But your taste buds may be different than mine.  They also have a sprout growing jar there to grow spouts in.  Kat43

Good Morning May Warriors  Tomorrow is my Taxol, so I am up early, drinking spring water, and exercising.  It is a beautiful day in Ky, with a breeze at 7:30 when I walked.  I am a little sore from yoga yesterday, but a good sore.  I  worked on my lymphatic system, and I can feel the release.  Also I worked to stretch my left side where I had the mastectomy.  It makes me feel alive and healthy. Leanna  I am going to start riding my bike again too.  I love the breeze in my hair.  Ride when it is cool though.  Day  Thanks for the information on the broccoli sprouts.  I am going to do this!   LibraryJenn  One recipe I really like is the Rockin Black Bean Soup on page 71 of the CFK book.  I love bean soup and this is great.   It reminds me of the Black Bean soup at Panera, if you have those restaurants in Canada.  Beans are a great cancer fighting food, and the kombu does cut down on the gas.  You can order this seaweed on line, if your health food store does not have it.  I am finding I have to salt everything a bit more, due to taste bud issues.  I use sea salt and sometimes Kosher salt which is coarse and can be found in every supermarket.   As for herbs and spices, fresh is better, so buy small amounts.  I replace mine every 2-3 months.   So start small.  Garlic is only good fresh (in my opinion) and it is so good for us!  Most herbs can be grown in small pots at home and do not even taste like the dried stuff in the store (which is mostly stale and of little value)   You can grow them inside in the winter, on a kitchen window sill.  Some herbs  are evergreen and keep all winter outdoors.  I have a very small herb garden outside my back door.  I like all the salmon recipes and the Easy Egg in a cup. My suggestion is to try the recipes that have ingredients that you like. It will inspire you to cook and be most likely to please your taste buds! I hope everyone has easy treatments this week, and for those who are finished,  Yeah!!!!  I love to hear from everyone, and miss you all when you are off line for a while, but I certainly understand that our energy just does not allow it sometimes. 

Day  I love lentil soup too, and split pea is another of my favorites, even in the summer.  Your Romanian recipes sound yummy.  Cabbage and beet borsch is another favorite of mine. Cabbage is a big staple in the Appalachian and German cultures, which are  my roots, so we might enjoy sharing recipes.    I have found soup to be one of the best ways to eat healthy, and save time too.  A good soup and salad is always welcome at my house.  Easy to fix for one person or many, and no prep at the last minute.  I also love black bean burgers, a favorite of many who think they would never eat a veggie burger.  I made one for lunch and dressed it with a little avocado, onions, tomato. Yummy.  My black bean soup is cooking and I was able to use some of the beans for the burger.    I had the same idea as you about creating layers for the sprouts.  I have a sprout system that works with quart jars but I don't think it will be large enough for the quantity we will want.   

OMG, I feel so behind! Here goes...

First of all the wineries were so nice yesterday. Good wine + Great friends + Sunshine = Wonderful Afternoon!!! and no "cancer talk"....

Day - I'm glad your Dr. has agreed to just remove a few nodes, good news for you! Sacphotomom - You'll never be left alone! I'm sorry you're in so much pain, mine just started getting better 1 week after Taxol. Patricia - So sweet of that couple to make you a special batch of applesauce, people like that make me smile  "Peace with a path of uncertainty", love it - well said! Good luck with treatment tomorrow. NJB- How are you feeling now? Sorry you had to go to the hospital but sooooo happy you are well and were able to get out to spend the day with your son! You will both be in my prayers. My brows & lashes are definitely thinning. I heard a lot of people say that they didn't loose them completely till after treatment but they were fast to grow back. X-raygirl - of course I think about "it", but I try not to dwell on it. I'm gonna focus on Patricia's quote! And I certainly count this group among my blessings  LauraM - I'm sorry you're having bone pain too. Fingers crossed for no radiation for you. About drinking, my Dr. told me "I'm not one of those Dr's that say no to drinking - a glass of wine here & there is fine", so that's what I do. I usually don't feel like it the week of treatment but I'll have a glass with dinner on my off weeks. Leanna- Happy Anniversary! I am not having an issue with pimples yet but I do feel like I have a childs swimming tube stuck around my waist!

I make a rule that we all have to keep coming here! Just cause chemo will be over doesn't mean we're not going to need to lean on each other. You are my girls and I'm not ready to let go of that!

Day.... HA!  Actually, I had you pegged for being in your 40s... but thought you would say 30s.     I've only had one node tested... it looked 'suspicious' on MRI but appeared to have the fatty hulim (sp?) intact which would mean probably not cancerous... but it was positive.  It was NOT a SNB, just ultrasound guided to that node.  I don't know if it is common to do it that way or not.  It also showed lymphovascular invasion... which my other tumor biopsy did not... ???  I guess I will just trust my onc... and tumor board... I am at MUSC in SC, which is a major cancer center. 

Kat43 - Adding Brasicca tea to my list... I have a lot of running around to do!! 

Patricia, we'll have to motivate each other.  I was going to ride tonight, but got thwarted by a thunderstorm!! 

Paxton - I don't know what to do... my zits are the deep, under-the-skin, sore ones!  Ugh.  I got one right on the end of my nose.  My husband commented on it, so I told him that I had until Friday to report to Santa at the North Pole....  I asked my onc nurse about the Avastin today, and she said that it just wasn't proving to be effective... she didn't mention any negative SE that stopped the trial. 

Summer - So glad you had a great day!!  LOL about the swimming tube...   I tried on some pants the other day and couldn't buy my size becaused I couldn't button the waist... oops!!   

Sacphotomom - I feel like my head would look better if I could get some sun on it too, but I'm afraid of burning it... I can't imagine it would take long at all to burn.  I like cabbage and love kale! 

Treatmnet was uneventful today, and very quick.. YAY, and dinner was nice. We went to Lowe's on the way to dinner and picked up new curtains for the family room and I love them.  We had to use both for one window... so I have to hunt down 2 more at different Lowes as they only had 1 left... they were on sale!  Need to get some pillows to pull the color out of them now.  AND, I got my first disability check today!!  Word! 

(((HUGS)))

Wow, I was at work yesterday and now have a lot of catching up to do.  

Day~ I still smile at the thought of you leaving with a gown.  I brought one home from the hospital with me (shh!) so that I could "play" patient/doctor with my DH sometime.  I don't want to lose that playfulness side of me through all this.  Plus, sometimes I might be the patient, and sometimes I might be the doc in need of seeing my patient - LOL!  Maybe that's too much info.  Re: nodes, is that under anesthesia?  I had mine taken during the mast. so I'm just wondering.  Better be safe then sorry, right?  I grew up in a Lithuanian home and cabbage rolls were a specialty of my mom's.  I will have to make some when my energy is up.

Sacphotomom~ how's the spine pain?  My DH wanted me to quit the Neulasta because of the amount pain I was experiencing.  My onc's office said, NO WAY!  It would be too risky to get a nasty infection that could land me in the hospital.  Be careful!  I hope the pain has subsided.  Re: the long brows, you may want to trim them.  Mine are getting sparse, but I still trim them to make them look groomed and then pencil them in lightly.  I've exposed my head to the sun in small amounts to get some color on it and have even put some self tanner on it so that I don't look so sick.  Hope you enjoy some pain free better days this week!

LibraryJen~ 8x8cm tumor?  How do they measure it at the onc's office?  Or do they send you for a scan?  I liked what you said about writing your fears in a journal.  Then they're out and not just swirling in your head.  I'm going to do that.  I don't want to ignore those aspects of the disease, but am trying to focus on the positive and on living, thriving, etc.  There's a balance in there and I'm trying to achieve it.

Patricia ~ I'm going to get my hands on Simonton's bks.  You and Leanna inspire me with the biking.  Luke wants me to start biking with me - I just lack some energy.  I MUST get moving and kudos to you for doing it!

njbhwgirl~ stinks about your lung infection!  I hope you got through Mon. ok - your heart must have been aching!  (((((hugs)))))) to you!

Leanna~ can you remind me why canned fruit only on nadir days?  Glad your house is getting organized and redecorated.  Have fun with that!  And, happy anniversary.  Re: the zits ~ my suggestion is tea tree oil.  My nurse told me to use it on my nails if they start getting funky from the chemo.  It's a great anti-bact. and wonderful for acne.

Paxton~ Have you tried rinsing with salt water and baking soda for the mouth?  You may want to try tea tree oil for the breakouts as well.  My daughter swears by it!  Just a heads up - it's got a strong smell!  I know what you mean about "chemo face".  I'm right there with you!

Summer~ I bet my swimming tube is bigger than yours!

I still haven't found out my KI-67 - hoping to call Hopkins today.  Someone yesterday told me that her onc.'s office gave her cancer markers each time she had blood drawn.  Anyone ever hear of that?  I don't even know what these markers are - though I've heard of them.  My fingers are crossed that I'll be chosen for Casting For Recovery in MD.  It's a fly fishing retreat, with a limited number of BC patients/survivors.  I've heard it's wonderfully bonding and healing.  I got the idea yesterday that I might sign up for belly dancing classes - LOL!  Low key and fun - right up my alley :-)   Sorry to be so long today.  Cheers to you, my warrior friends.  Have a blessed day.  

Hi all!

Another hot day in NJ...

Sacophotomom:  when I was in hospital my wbc was 45,000. I flipped out because the normal is suppossed to be 4,000. I asked onc. if this was a problem and she said no because in a week later it would drop significantly. Now I am wondering if I should get the shot next time???

x-ray girl:  I just got a email today getting selected for casting for recovery. I go 8-27 thru 8-29. Hope you hear soon! When did you request to go if  selected? The fruit combo sounds delicious. can you add some kiwi for me (lol)

Summer:  looking at my hot dog roll (*alias stomach) right about now. I wish I could excercise like most of you but I really have no energy.  Hoping in a month to get back to at least walking

Leanna: glad treatment went well. It has been 2 days for me and I am starting to crash from the steroids...Hoping this is gone by tomorrow,  Although I am not going to complain because the AC was so much worse.

And I have no intention of every leaving you ladies.. You inspire me, drive me and make my day

Hugs kisses to all today 

Hey X-Ray and NJ, I am doing the Casting for Recovery here in California on the weekend of 8/20.  I pushed my rads to start the following week so I have a good 6 weeks to recover from chemo, then fishing, then rads.  The resort where they are holding the even is about 5 1/2 hr drive from my home so I am hoping to hook up with another participant to car pool with.  I was looking at the resort info and see that the rooms have a queen bed in them -- and we will each have a roommate.  Seems odd to put strangers in the same bed, doesn't it?

 Jen

Packjen - Whew, ya!!  I was thinking that would be strange also.  That sounds like fun... if you like fishing (which I do not!).   

Good Morning May Friends  Well I got through my 2nd Taxol yesterday with no ill effects, even with decreased steroids(10 more to go) .   I learned they will still give me some in pre meds, so I am not as fearful about not taking the at home ones.  Next week I will not have them the day before at all.  Which will give me a better night's sleep I bet.  I can't believe how good I feel, but my bloodwork shows my red count going down again and I try to build that up.  So I am doing some red meat, which I rarely do. Xraygirl-I have a nurse outfit that I bought when my Sweetie had surgery.  We loved it.  Not TMI for me.  Ha.  Also I have studied American Tribal Belly Dance for 5 years and was in two different dance troupes.   I highly recommend it.  It is a very woman focused way to get in touch with you body, and by the way quiet a workout.  But you can start slow.  It does wonders for the toning and shaping the  body.  The first Simonton book is Getting Well Again.  I can't remember the second, but both are good. Leanna yes, let's encourage biking.  It is to be 95% here today.  I walked earlier, and maybe early evening biking will be how I work it in.  My BF likes to bike, but he is so much faster than me that it is not a lot of fun for him to go with me.  We do have a small bike trail in my town, but it is safe to ride most all of the town, and I always wear a helmet. Pacjen and NJbhwgirl Casting for recovery sounds great.  I also would not want to share a bed with someone, but anything that gets us away from all this is great I think.  I have been trying to visualize what I will do to celebrate completion of my treatment, which after the rads will be the end of November.   Maybe a trip.  I am going to Thailand, Vienam, China and Cambodia  in Jan with my sister(This was planned for over 10 months ago, before my diagnosis),but I want some down time with my BF first. .  I am trying allowing myself to visualize what would feel like a healing celebration with my boyfriend John, but since dx, I have trouble with visualization of such things.  That is why I am working with the Simonton books.    Sacphoto mom I hope you are moving out of the pain and slump and feel like doing more.We all get down with this, and it would be crazy if we didn't.  Paxton, don't forget to find time for yourself, for the meditation CD.  It can make all the difference! I hope you are getting some much needed help.  I am getting into the cooking.  I did a great imitation of Julia Child as I prepared veggie filled omlets for myself and my BF yesterday morning.  He was so pleased, and I made them eaisly, thanks to watching the old episodes I ordered.  Julia makes me laugh because she never needed to be perfect, she just loved to cook. I like role models like her! I am praying for all of you, and I am so blessed to have all of you in my life!  

Hi All - Sorry!  I have a lot of catching to do on everyone's posts, but just wanted to say Hi to everyone.  I have my rads planning session on Weds and now have 3 new tattoos!  Actually, my only 3 tattoos.  I start rads on 8/2.  I like the idea of staying with this group through rads, tamoxifin and whatever else they throw at us.  I feel like we've already been through so much together already, I don't want to find a new group just for rads .  So, I'm going to just keep posting here!  Summer- good news, my rads dr said I could lose weight during rads, so long as I don't crash diet and I do it gradually, 1 or 2 lbs a week.  This is the same approach I did with weight watchers a few years ago, so I am good with that.  I feel so much better knowing I can start trying to get back to my normal size and wear my non-fat clothes again.  Of course, I am still feeling hungry all the time so actually losing the weight may be more of a challenge, but at least I know I can try when I am ready.  I am hoping the hunger starts to go away soon since I am now 2 weeks post chemo.

Day, thanks for all the info on the teas, etc.  I tried to find the Brassica tea around here, but so far no luck.  I'll probably end up ordering it online if I can't find it this weekend.  I'm anxious to get started on it!

LibraryJenn and LauraM - on the drinking thing, I saw a nutritionist at the hospital where I am being treated and she told me that we all have estrogen in our fat cells and that drinking stirs up that estrogen so if you are ER+ (like me) you shouldn't really drink, even after treatment.  When I asked if one every now and then mattered, she said one every now and then, or even in moderation, is fine, but less is better.  Not sure on this, but since I am not a big drinker I didn't really question it more.  Tuesday was my birthday and I had my first beer since April.  I swear I felt loopy after about half, but since I wasn't driving, that was ok by me

sacphotomom - hope you are feeling better soon.  Back pain is the worst.  Hang in there!

x-ray girl and Leanna9- People ask me all the time if I will be cured.  Maybe its the whole Komen for the Cure thing?  I don't know, but I get it a lot.  And that makes me think about it.  I usually just tell people "that's the plan" .  Before I was diagnosed, I took a 401k quiz that said I will live til 104.  I'm holding on to that thought and just trying to make sure I do what I can to get there.  I've made a lot of changes already in my diet and exercise.  I need to start working on finding that zen place though because I am a worrier and I let things stress me.  I keep calling that Phase 2 and saying I need to work onthat, but so far I haven't made much progress on Phase 2.  I just got the meditation cd's Patricia48 recommended, so hopefully those will help me jump start phase 2.

Ok, I know I missed a lot of you.  Sorry!  But I will read all the posts and catch up this weekend.  Take care, hope you are all feeling good today and have great weekends! xoxox GG

Ummm guys ? - about the Brassica tea, what I said is that I doubt it has any effect. By what my BS said he had talked to the Dr. at John Hopkins, even the extract is way less strong than the plant itself - the DIM gets destroyed by high temperatures, so if you make a tea out of Brassica plants it would be like cooking broccoli - no DIM left. So it would be a waste of money. What he told me, is that the broccoli sprouts (fresh) have the highest amount of DIM, and two tea-spoons a day should do the deal. He said also fresh broccoli, cauliflower and cabbage. NOT cooked. Fresh. Of course, he added organic if possible. So instead of wasting money on the Brassica tea, just buy the broccoli and cauliflower and cabbage and eat them as is.

Day: thanks for the info on brassica.  We're all trying to do the "right" things.  I'm not a huge fan of raw broccoli and the like (love steamed) so maybe the sprouts. 

Yes, I'm still listening to my meditation CD's.  And the Proactive is making my face feel calmer.  Still feeling the crash though.  I don't have tx next week and dad flies in on Wed.  I'm still flip flopping on whether I want to finish doing the Avastin.  I think I'm going to do the next tx and then there's only 1 after that to decide what to do with.

Well, baby is in bed and bf stepped out for a drink so I think I will lay in bed and listen to the rain for awhile.