May 2010 Chemo

Sacphotomom - I want to see that movie, I heard it was hilarious! I'm glad you & DH had a nice relaxing weekend.

X-ray - I don't know anything about the Alka water but I'd be interested to hear what you find out. Love all the martini recipes! Juicing in martini glasses....good idea! Maybe that'll make it taste better LOL.

Paxton - Bitch away!!!! That's what we're here for. Sending lots of hugs your way, I hope you're feeling better soon.

Stacy - I second everything that Tess said regarding Taxol. I also had a reaction during the infusions, which was scary the first time but then became "normal". It also depends on whether you're having the DD x 4 or 12 weekly. Good luck!!

Tess - Enjoy cocktails with your sisters no matter what you decide to drink!

Kim - Good luck with rads today. I also think I'm still in a bit of denial - "this didn't happen to me". I'm guessing it may hit me hard one day....watch out! lol

NJ - I'd love to get together and I don't think I have anything planned for September!

Where is Leanna?????????????

Hi Ladies -- I wanted to tell you about my Casting for Recovery experience this weekend.  I had such a wonderful time!  First of all, it seems I am always the Field Trip Coordinator so I drove 4 other women from the Bay Area up to the retreat.  All the chatting, laughing and comparing of notes made the 5-6 hour drive seem much quicker.

 There were 14 participants and about 10 volunteers at the resort.  We had the whole resort to ourselves and everyone got their own room (may not be the case at all locations).  From the minute we arrived we were taken care of.  The volunteers took our luggage from the van to our rooms, then they helped us get fitted for our gear (waders, boots and vest).  The food was just amazing!! And the participants were not allowed to bus their dishes -- the volunteers took care of that.  At every meal we had a gift waiting on our plate: a new hat, a box of flies, etc.  But the most amazing part was the genuine caring and love I felt from all these women -- both participants and volunteers alike.  Most of the volunteers are survivors and of all the participants I was definitely the "baby" since I am still going through treatment.  Many had been cancer free for 10 or more years.  Sad to say I did not see any other baldies at the retreat.  Oh well.

Saturday was spent learning about the equipment, learning to cast out on the lawn (2 one-hour sessions broken up by other things) and learning to tie knots.  Over the weekend there were a couple of sessions where we could just talk about our cancer and ask questions of everyone including a couple of professionals (an oncology nurse and a psychologist).  There were a lot of tears and much laughter.

Sunday was our day to fish.  A group of fly fishermen (our "river helpers") arrived from all over the state just to be our one-on-one guides and support crew.  Mine was a wonderful man named John who must have stood 6'8" and was the kindest helper I could have asked for.  He had a wading stick to help me walk through the current and never let go of my arm until we were at a comfortable spot in the middle of the river.  He tied my flies on and helped me with my casting -- and never laughed at my amateurish attempts.  He so very much wanted me to catch a fish!  I was going to be happy just having the experience, but I did get several nibbles and actually "landed" a beautiful little rainbow trout (and I do mean little -- it couldn't have been more than 6" long).  You should have seen the sight of this great big man with a great big net holding my tiny little fish!  Priceless.

John's wife came along and sat on the bank and photographed the entire group and got some lovely pictures.  This was John's first time as a River Helper and as we were walking back to the car I asked if he would do it again.  His answer was a resounding, "Absolutely".  It still amazes me that these guys drove for hours to teach the art of fly fishing to total strangers (and some of us are stranger than others --  I know you know who I mean).  Some of them do it year after year.

At our "closing ceremonies" a senior volunteer who has been fly fishing for decades brought one of her personal rods and reels to give as a gift to one of the participants -- and it was my name that was drawn out of the hat!  So now I have no choice but to become a great fisherwoman.

All in all it was a fabulous experience.  I would not trade it for anything and may very well end up volunteering myself so I can go on this retreat again.

Jen

Packjen  Thank you for sharing your wonderful weekend.  It sounds like you had a great time.  You gave me a smile today and I really needed it.

Packjenn....I too teared up  when I read your experience this weekend...It sounded so relaxing and with all the women there to talk to with all the shared experience..lots of knowledge that not one of us really wanted to have.. But I bet the feeling of kinship was amazing...And that's what all you gals who are lucky enough to get to NJs house on the shore is sept will be feeling.  I envy you all for being able to get there..   One question PackJen ..where was it again? 

Summer   Wow I am so happy for you to be getting done....my thought will be with you tomorrow ...I have gone to all my chemo appointments (except the first) by myself...I did that because even though people wanted to come with me I would rather they stay with me on,  with AC the 3 day  and know on Taxotere on the 5 or  6th day..when I get into my head because of how bad I feel...During the drip I usually work on my laptop and or read all my magazines that I didn't read from the beginning of the year..   or most of the time I talked to all the wonderful people sitting in the chair next to me...I have met some very interesting people..and  a couple of grumps...

Sac -- it was about an hour east of Redding on 299 at Fall River Mills.

Summer ~ last tx, eh? You did it!  Congrats!  I wish I lived closer, I'd offer to come with you.  Hope it's uneventful!  Re:  1 hr. each way for rads - I'd stock up on some good books on tape.  

njbhwgirl ~ no plans for Sept. right now.  Thank you so much for the offer!  Emma has to be at M.U. on 9/5 - 3 days after my last tx.  We're playing it by ear as to whether I'll be able to make it - depending on SE.  Good luck with your scans.  What cocktail do you have to drink?  I always had dye injected...

 Day ~ I tried finding your site and didn't have luck - will try again.  You are one talented lady, I know that much!  Hope you are feeling stronger each day after your procedure.

Irishtess - Ireland, here she comes!  YAY!  Hope the neuropathy and chest tightness subside soon.

Sacphotomom ~ Glutamine helped me too.  Staring at the ocean is therapeutic, isn't it?!  Re: getting together in NJ - I think you should consider coming!!!  How fun would that be!?

Paxton ~ my heart goes out to YOU!!!  I'm so sorry about your SE!  You will continue to be in my prayers.  As Kim and others said, we're here for you and you can let it out here!  Sending big hugs your way!!!!!  I plan on doing a combo similar as you once tx are over and I have energy again.  I might see a nutritionist.

Kim ~ funny, I also feel "this didn't really happen to me".  I  never really said "why me?"  More it was like "me????"  I loved your last post!  Well said!  and I love your attitude:-)

Jen ~ Thanks for sharing your weekend with us.   It was heartwarming to hear.  I'm first on the waiting list for Oct. retreat.  Fingers crossed.  Yay for getting the rod...  maybe you can use it when you volunteer.

Leanna ~ I'm praying for you!

Patricia ~ I bet the golden retriever brings smiles to your face.  Hope you're well.

Re: the alkaline water... I'm not planning on testing the pH of my urine but am intrigued by what I've read on one of the threads on BCO.  Some have lost weight and have gotten lots of energy from alkaline diet, etc.   I might order a case of Alka Pure water from Amazon to see if I notice a difference.  It's too bad the filtration systems are so expensive.   

Daiva, if you go on the rest of the thread, there are more things I posted there. I don't do regular clay sculpting anymore, as with all the LD Flap and stuff my hands don't have the required strength anymore to knead the clay - I started doing polymer clay instead and One Of A Kind art dolls (like fairies, mermaids, etc) and polymer clay combined with gems jewelry. Right now what was on my store is stuff I can't do anymore - I started working on a new format to present my new stuff. I'll let you know as soon as I have it up.

Why I logged in so early - I got the call from my BS's office - all the nodes were negative!!!! yay!!!!

Didn't sleep too well last night - so I guess I'll go back to sleep now - no more worries. You can't imagine how relieved I am!

DAY:  YEAH YEAH YEAH....what a relief. best news I heard all day...okay let's keep good news coming.....

x-raygirl: cocktail for pelvic scan.. have to drink an hour and half before..guess for dye contrast. needle is for the bone scan.....I should light up inside with all the scans I have had (ha ha) hope you are well enough to take your daughter.. is beautiful time of year to come to the shore..

sacphotomom:  YES would so love if you could come. I know airfare rates high and lot for short time but I am close to NYC..maybe if time and finances prevail, you could arrange it. or maybe packjen will drive (how funny would that be).....

Hi everyone!!  Thank you so much for all your positive thoughts and prayers... I felt them all!! 

DAY - YES!!!!!!!!!!!!!!!   Great, great news!!! 

Jen - Loved your story... sounds great.  You know, I've only seen 1 bald woman during my treatment, and I saw her about 3 days before I shaved my head.  BTW... when do you lost all your hair on the AC?  My head is still the fuzz I shaved it down to about a month or so ago.

The AC and Neulasta are hitting me pretty hard.  I spent most of the time I could on the computer this past week just making sure all my online banking was in order, and all the bills were paid.  You know chemo brain... have to go back and check and then check again! 

I have been a bit bummed by the lack of help during my 'bad' days the last 2 weeks... all the people who said let me know if I can do anything.... just don't seem to be around to do anything.... mmmm... had one GF that took my son on my awful day, Friday after treatment.  Another GF and her husband wanted to "hang out' with me on Saturday... so, I did, but it just wore me out trying to stay awake!  My WBC is fine, but I'm very anemic... and not able to eat/drink much, so that's not helping.  I started taking some iron pills in the hopes of at least avoiding a transfusion... I just don't want one.   But, I know I'm not taking in enough to sustain myself.  I'm keeping gatorade down this week, but I think my body is using most of it, because I'm not peeing most of it back out.  Then, my husband's sister asked what she could do... and I said Thursday, Friday and Monday, Tuesday after treatment are reallly bad days for me.... and she said back, 'oh, I don't have my work schedule."  Then, when I bumped into her on Thursday at DH's parent's house... she was talking about her 'day off....'  and I was thinking, you didn't even try to call me to see if I needed anything?? WTH??   So, yes, I am mad at her!  I think I am most frustrated at all the people who have said and continue to say, let me know if there is anything I can do for you, and then they just can't help, or don't respond to your messages.  My one GF that stood me up never answered my message when I told her I was upset she didn't call me instead of just telling me on facebook she wasn't coming.... what, so now she is mad at me???  Really?  Oh, and I turned down her offer to have someone come put a garden in for "people who are ill" (her words).  My husband said that everyone has brought me dinner once, and that is their 'quota' for what they need to do to help me.  He said that I am being unreasonable in thinking people should help more.  Maybe I am... but dangit... I would help my friends more if they needed it, so I don't understand....  I feel so bad that I cannot do more with my 4 year old everyday.... I just hate that I am so tired, and if I was able to drag myself out of the house to so something fun, I would have to take a nap... and I can't!!  Ugh!!   My DH does so much... he works all day, and then comes home to either take Ryan to football practice, or clean the house, or bathe the little one.....  he's a saint, and he doesn't complain, and I can't even do anything for him! 

Now, I'm on here.... Debbie downer!  What is wrong with me!?  I am trying so hard to stay strong, but I just want this chemo to be over... it has beat me down!  2 more.... 2 more... I can do 2 more!!!  DH starts his new job on Monday, and he can't go to my last 2 chemos with me...   So, go alone, or take a friend??? 

Alright ladies, that's all the nagging and complaining I have in me for today!!  I hope and pray that I will start to feel better tomorrow (day 9 past treatment)!! 

((HUGS)) to everyone

And, anyone else who did refuse tattoos on rads.... I'm feeling very strongly about the fact that I am going to refuse!! 

Leanna

Well, I hit "submit" by mistake, so here's the rest:

Daiva:  Hope the SEs don't prevent you from getting Emma to MU.  I also hope we can all meet in Sept!

Jen:  I agree with the others ~ your story was so moving, on so many levels.  Thanks for sharing.

Kim:  Your attitude is great!  I always enjoy reading your posts.

Ok - that's as much as I can remember, girls!  I leave tomorrow, have my last tx on Friday, & will be home on Sunday (spending the weekend in Scranton with my mom & sibs).  Hope you all enjoy the weekend & that we continue to move through treatment, SEs, frustrations, setbacks, and tears to join all the survivors who have traveled this path before us.

Sacphotomom:  only kidding about packjen driving...I mentioned it in jest only because she was the team leader and picked people up on her trip last weekend..but hey...more the merrier... would love to have all of you. (even though we will be on sleeping bags on the floor...The house is only 1000 sq feet but quite adorable) 

I also have started to get nubs under my armpits and legs. In a way that is good because at least we know the hair is growing back. yeah yeah...I spit my coffee out with laughter this morning on your story in the chemo lounge. I  too felt the same way each time I went...Good way to keep our wits about us and to say "not me"  you are too funny.

LEANNNA......Glad to hear from  you...I know AC is such a drag...but only 2 more baby....Your feeling everything I felt while on this treatment..It is exhausting and draining... I cannot imagine it with small children and no help..Yes you have a right to be angry..damn angry...so rant rant rant away....we will always listen...and yes do not go alone for your next treatment.  It will do you good to be with someone to laugh and talk....Missed you,..glad your back...

Irishtess: enjoy your weekend in Scranton. congrats on last tx..

Denise - you are right... the people who are making "excuses" are NOT the ones that I thought would... and some of the people who have been great, I also would not have expected.  I'm just tired of asking... I feel like a broken record... all these people are 'following' my progress on my web page... I feel like if they want to help at this point, they will keep in touch with me and offer, so I am done asking.  I have 2 more to go; I can do this.  That's awesome about your dinner and the VPs wife! 

Tess - You hit the nail on the head.  I am hurt, and I think I have moved to anger.... maybe I am grieving the loss of the friends I thought I had!!  Ha!  I'll let you know if I go into denial!!  Just kidding... you are right though, it's easier to be mad than hurt and disappointed! 

Theresa - Thanks!!! 

Jersey - .....  right?  About the chemo lounge story!!!  I always thought that too.... we would give up our seats in the waiting area when the "sick" people came in... because I am not sick!!!    So funny. 

I'm off.  Have some needs from the store.. first time I've been able to go for a while, so I'm outta here!! 

HUGS to all!!!

Kim loves ....Dare  Dare Dare...   I love your tee Shirt....My hair is growing fast...I'm wondering if its going to slow down with these next two chemo... I trying not to get too excited just in case it does fall out again..but its very black now....I called it duck down when it was .light brown ..but now its definitely 5:00 shadow..of may be its the 4 day vacation beard stage....not a lot but defiantly there.....wearing no hair to work..at my dinner everyone was expecting me to show up with out hair..strange people..lol

leanna this is 3rd AC should be an easier one ..or at least that what they say...an it really was for me!  So I'm praying it is for you.

It's the weekend DH is home and son will be  home (well at least here)..and I'm going to be getting more and more tired ..oh well someone to talk to. or at least bug...by Monday I should be out of it..Wow doesn't pizza sound good for dinner tonight...these crazy steroids, I'm am so hungry and not for good things ..I was really glad when, I woke up from my nap, we didn't have a bag of chips in the house..they would be gone! Does any one else crave salt? ON my hyper days I just crave salt..sweets are not good but give me some salt...weird!  Thats all I need more water weight..

OK everyone have a good weekend..

Patricia  Paris in the fall how lovely...if radiation make you that tired then going now is a better time.Your going to have such a beautiful and mentally relaxing time...I wonder how long the sever tiredness last..and its the worst during and just after the actual radiation I have a friend that is 3 yrs out and realizes that she doesn't have the stamina she used to..Which makes me think that wow if she still feels it ..she used to play indoor soccer, before this BS happened to her. oops I mean BC...lol now that was a true slip!

I'm starting my Christmas shopping on the good days between chemo, so that If the tiredness from radiation is that bad at least I will have that done. ..I have only bought one present so far and Its hard because Christmas shopping is something I used to do all year long..( I would get things when I traveled) So not such a big to do when the malls/stores get crowded..this way I only to have all my baking that gets sent out..

Still on the steroid high today..going to the grocery store and farmers market  this morning before I slow down.. I think last time I was hyper for 2 days .

Today is my 28th yr of being married to my best friend. Guess he really is a keeper!

Kim - I double dog dare you!!  And, thank you for that point of view.  I think you are right, and that treament does last for so long.... and I had the easier taxol first... not AC, and everyone is done helping!!   

Denise - Yes, I eat way more salt than before, and crave more salty things now.  And, people thought you'd go out bald..... odd people!!    I hope this is the easiest as well!  I just need a break.  Everyone is like, you only have 2 more... that's easy... and I just keep thinking of all the days that means where I will feel like crap.... I don't know what I will do when they celebrate that it's my last chemo and I'm bummed because I know I still have to bare the SE!!!!  That will be hard!   And, I'm sending fast-growing hair vibes out to you!!  Keep growing fellas!!  CONGRATS on your anniversary!!!  That's awesome!  And, Christmas shopping.... I would say you are crazy, but actually my son just placed an order for a couple of things (through a fundraiser from his school)... I guess it is getting to be about that time, especially for some of us that have not had surgery yet!  I'm probably just going to be finishing rads around Christmas time!! 

Patricia - big ((((((HUG))))))  sorry you had a rough week, and need a transfusion.  I was at 9 last week.... so, I'm getting close too.  It'll help you feel better!  And, you inpsire me also... you are always so positive, even when you are feeling down!  Me, I'm just debby downer when I'm down!!  If you're taking anti-dep meds... I need mania meds!!    I hope they continue to help you feel better, sweetie, really!!!!!   I'm SOOO excited for your trip to Paris!!!!!!!!!!!!!!!!   How fun!  I'm glad you are not waiting too!  That will be so awesome!! 

Drim - Glad you are doing well on rads.  What are the tests you are talking about with the tamoxifen??  I don't know anything about it, and guess I am suppose to start it relatively soon also, so need to start doing some research!! 

Not much going on here.... just enjoying my good days until Tuesday!!  Went bowling with the family today (139, not too bad), and ate at 5 Guys Burgers and Fries... YUM!!!!!!!!!!!!!!!!!!

(((HUGS)))))