Sexy Side effects

Hi! Just wanted to check in, let you know that I'm doing well; had a rough couple days but things are looking up today.  Last week I had awful mouth and throat sores, could barely eat (funny, didn't lose a single pound), and it hurt to talk! Took the weekend to recover and am much better now, took a couple days to resolve and now just have a little soreness still when i swallow, but not bad.  My hands and feet are sucking up loads of lotion; i had to take my wedding rings into the jewelers to have them cleaned cuz of all the lotion i apply:) hafta be more careful. I bought special gloves to wear at night, and that coupled with the wrist brace I wear for carpal tunnel, plus the mouth and throat sores - sexy!

I received an amazing Chemo care package from my friends at RIT!!:) So thoughtful and sweet, it made me so happy! I got several kindle books, a blankie with Will and Jennifer stitched on it that I'll bring to my treatments, honey, cough drops, socks for my poor feet, lotions, candy for my sweet tooth, and lots of other little things, PLUS a massage gift certificate from Human Touch Initiative! woohoo!!  Kathy, Kathy, Miriam and Colleen, you're awesome friends and such a great support system for me! Thank you all!!!

I have received 2 other HTI certificates and used them in the past 2 weeks:) Thanks so much to my Dad:) and Cheryl, I can't even begin to explain how much a massage does for me, body and soul, and I'm so grateful for your generosity.  Now I have another one!!!

Oh, i forgot, I went to get my hair cut yesterday, and I'm a source of amazement at the salon:) I had my hair colored about 3 months ago, and somehow I no longer need to have it colored - my natural brown has returned, thank goodness, and i have a couple grays here and there, but no skunk stripe :) and i cant even tell it was colored at all.  Voodoo? i wonder... chemo may make it thin (MORE sexy), but it shouldn't fall out on the current chemo regimen.

So many tragedies in the world and in my world this week...keeps me humble and grateful. Merry Chrsitmas!

Yesterday after chemo, while I was eating my captain crunch, Alex interrupted her lecture on my poor eating habits and out of the blue asks me if going through all this treatment is really worth it? So, my first response is to tear up of course, lucky I could pretend to be very interested in my crunch berries   I said well, the past 5 years I've been on one kind of treatment or another, so I have to say yes, it's been worth it to be here for the past 5 years for me and for you:) I wouldn't have wanted to miss them, so I hafta keep doing treatment since it prolongs my life. She worries about me, I can see it, and I'm so grateful she talks to me about it. I really am living on borrowed time, I think about that often, and I think it kinda feeds my denial that anything could really happen to me. Anyway, none of this is to say that 5 years is enough, I can die happy cuz that's certainly not true. I'm just feeling blessed:) thank goodness for Alickus:)

so far, so good...

At the risk of jinxing myself :) i'm feeling well so far. The infusion was no big deal, only 75 minutes with premeds of dexadron and compazene which seem to be doing their job at keeping nausea at bay.  I had an echocardiogram to check my heart function before they give me chemo, and all was well.  im so healthy, except...:) Thanks for all the good wishes and love - it keeps me going! Will was with me all day, which was all i needed. We are home now i have to go back to the hospital for a shot of Neulasta, which i need to research a little.  I think it's to help my bone marrow make more blood cells but not sure. Am hoping the side effects horror stories i've heard don't apply to little old me. Fingers crossed!

Doxil, here i come...

Onc finally called me back, they've decided that i should go on Doxil and im going to start the first treatment tomorrow at 1230. i hafta go for an echocardiogram first, then to see the doc and see the PET scan results, then on to treatment. So, send me good vibes!!!

Here we go again...

PET scan results are bad, doc said significant diffuse progression, liver, spine, pelvic bones. NOT what we wanted to hear. So, no more Xeloda, she's considering 3 different meds, taking the time between now and next appointment 11/29 to determine which one best for me.  If you feel like doing some research, I'd love to hear what you find! The 3 options are: Ixabepilone (Ixempra), Eribulin, and Doxil.  Apparently the Doxil is one of the chemos that there has been a recent shortage of (good english i know), so that may be off the table - see what the pharmacy says.   I've been checking my support group website, Inspire.com, for other folks' experience with these drugs, and it sounds like Ixempra is pretty rough on the body. Off to check on the other 2 now.
As always, I need your good vibes:) My numbers were up last week, so i had a feeling this was coming, but it's still shocking to know i've blown thru another treatment, from a limited list of possible meds that keep me alive.  Please keep us in your prayers.  

hiya!

It's been awhile - not much happening cancer-wise, which is always a good thing.  Tomorrow I have a PET scan so seemed like a good idea to ask you all for your prayers. My markers were up at my appointment last week, so i'm kinda going in expecting that the chemo has stopped working.  But not really cuz i live in denial and i figure i'll be fine:) Anyway, tomorrow afternoon around 2ish, send anti cancer vibes my way please.  Thanks!!!

Waiting

Saw my oncologist this morning, still nothing back from the lab on my Bronchoscopy results. They do know there was no cancer found, they're still waiting on identifying the infection that caused my symptoms so we can treat it. Apparently some results take months to grow, so just gotta be patient, and I'm so good at that!! Thanks everyone for asking how I am:) I'm good!!

home again, home again...

Slept in my own bed last night with happy doggies crowding me for space:) no complaints! Docs still dont have results from bronchoscopy back, but i'd rather wait at home, thanks very much.  Feeling fine and back to work...thanks for  emails, calls and visits! Mwah! Especially to my sisters and husband who were with me constantly- you're the best! xoxoxox

Imprisoned!

Writing to you from my room in the beautiful new cancer center:) the radiation a couple weeks ago went great, no more pain on the side of my spine! Will know more how effective it was on the next pet scan.  Latest news tho, happened Tuesday. I had a couple bouts of coughing up blood and my oncologist asked that I go into the ER.  Luckily it wasn't busy and I was seen immediately and sent for scans.  Chest xray didn't show much, ct scan showed ground glass opacity in my right lung and it looked fluffy! Anyway, not sure the cause so I've been here since Tuesday.  It's getting old!! I had a bronchoscopy done this afterneoon and am hopeful of being discharged tomorrow. Fingers crossed!!

Waiting for MRI results

hi! the PET scan last week showed that the chemo is working well systemically, but there is one spot on my spine, the T5 vertebrae that is well lit up.  On the PET, it looks like it hasn't invaded the spinal column, but its right up next to it.  So, radiation was suggested as an additional way to stop the progression of this one lesion. I went to see my radiation oncologist, was referred to one that specializes in brain and spine radiation, and he would like to do stereotactic radiosurgery on that vertebrae.  Instead of a little bit of radiation over several weeks, like i've had in the past for the lesions on my legs and chest, or even the radiosurgery i had on my liver with only 5 doses, this one will be lots of radiation, pinpointed, all at once over a day. Pretty cool:) i'm thrilled that it's all done on one day, no going back and forth to the hospital every day for several weeks, which is not only inconvenient but also depressing.  Plus the rad onc says that even tho this is more expensive (thanks be to blue cross blue shield) it has a much improved result and might even cure that spot completely.
So, i went for an MRI yesterday, and am awaiting results so that the doc will know exactly where to radiate, hafta meet with a neurosurgeon since my spine is involved, and hafta go for a mapping appointment where they set everything up, then the actual appointment, all of which im hoping will be done before i go back to RIT Sept 3.
The rad onc, Dr Usuki, was hired by my favorite rad onc, Dr O'Kunieff, before he deserted me for a great job in FL;), so i trust him, and he seems very capable and willing to explain everything to me. Ill let you know when the appointment is so you can send me good vibes.  Although the risk of spinal injury are slim, they're serious, so all the good vibes we can get are needed!

All good:)

PET Scan results are in - looks like i'm holding steady:) so stay on the chemo meds for now.  There is one spot on my spine they're a little worried about, it lights up on the scan, so ill have a consult with radiation, see if they can radiate that one spot into submission;)
Otherwise, everything looks good, no increased metabolic uptake for this girl...especially the spots on my liver that are the most concerning for me and the doc, they look good.
Thanks for the finger crossing!!

PET scan results today...fingers crossed!!!

Massage:)

Guess what i got in the mail?:) a gift certificate for Healing Touch massage from my pals at Z:) you guys are so sweet to think of me, what an awesome gift!!! As you probably know, not only does your gift help me (yay!) it also helps someone else with cancer to be able to afford the healing touch of massage as well...double your fun.
Thanks again my friends at Z...you're the best!!

At PET scan now, my regular 3 month check to see if the chemo meds are still working. Keep fingers crossed and send me good cancer killing vibes:)

Hello!
For the first time today, I got out of bed and had no pain in my leg! wow - what a difference, it's been a year since i've been pain free in my leg!! Last week was Human Touch Initiative's big fundraiser and Kim did an amazing job.  We raised $4500 for cancer patients to have free or low cost massage, and i won the raffle for a free iPad!!So funny! We had a great time; Bob was there and it was soooo nice for Will and me to have a chance to catch up with him.  Thanks to everyone who contributed and gave us their support, especially Alex and Natalie, who make me smile just by being there!!

Hangin in there!

Hi! I had my staples out and it hurt like crazy even with the baby Emla cream I put on! Thank goodness Will was with me and we probably made the nurse gag;) he sat right next to me and forehead to forehead we made it thru. Why doesn't someone come up with a better way to close incisions? Staples are so barbaric! Physical therapy is hard; I've never been good about exercising and this is no different. Almost everyday as I'm going to bed ( at 830;)) I think shoot, I forgot again! Ah well,I'm walking pretty well, short distances with the cane. Most importantly, I'm still here to celebrate our 7th anniversary! Woohoo! Hard to believe, thank God for my boy!

Back to work for me! i didn't really have enough time to get sick of watching tv :) but feeling like i need to get off my butt so, back to interpreting and keeping busy:)
I have an appointment with the orthopedist tomorrow, i think they will take out my 35 staples and give me the ok to graduate to a cane (which i did last week;)) I'm interested in seeing the X-rays tomorrow tho, just to make sure everything's in it's right place.
Thanks everyone for the flowers, cannoli, cheesecake, thai food, etc! you sure know the way to a girl's heart! Next up:ditching the cane! woohoo!! :)

Home at last:)

It's true, they let me out this morning with a crit of 33 and the ability to limp around pretty well on my own. Sitting in my dad's big recliner at home with 3 dogs camped out and big tv on criminal minds- heaven!

Stuck in hospital:(

Surgery to replace the rod in my femur went well, but was complicated by my veins being damaged by chemotherapy. They struggled to get an IV in me, then gave me a spinal block, then tried for an hour to get a central line in, finally ended up putting a line in my left thigh, in case I needed blood or medicine, etc. good thing because I lost 700ml(?) of blood during the surgery and so far have had 2 pints transfused through that line. I'm up and walking with the walker already, it doesn't hurt to walk but the incisions in my knee and hip are sore. I wanna go home! But I hafta wait until my hematocrit is above 30, so more blood transfusions today and hopefully ready for home tmw. The surgery took almost 6 hours, much longer than expected because the bone wasn't just fractured but shattered, and the rod was in pieces. They had a hard time removing all the pieces and put in a bone graft to encourage the fracture to heal faster. Now I have much larger incisions in my hip than last year; taking hardware out is more difficult than putting it in I guess! Thanks so much to everyone for your emails and texts and visits:) special thanks to my sisters for their help in taking care of the dogs and kiddos:) and me! Xoxo Ps I have a private room and Will has been able to stay overnight with me. He's lovely and patient and I couldn't ask for better support. I think Benny wren taught him all his nursing skills:)

Surgery, take 2

hi! After a cat scan of my leg and hip yesterday, we went to see dr tyler today and she scheduled me for surgery on monday.  the small fracture i got walking the beach last november has apparently deformed the surrounding bone enough that it caused the titanium rod to bend until it broke. its broken. inside my body. unbelievable.  so the reason I've been having increasing pain in my hip is because of the fracture in my hip and the rod scraping against the muscle and tissue. it makes so much sense based on the kind of pain i have, it's almost like it has teeth and it decides to bite me when my hip is in certain positions. anyway, I'm not happy that i have to have surgery again, with a 4-6 week recovery period, again. but i am happy that i can have it done so soon, to get it out of the way so we can enjoy our summer plans. and to reduce the pain!!

The surgery is removal of the current rod, pin in my hip and pin in my knee. then do it all over again, place a new rod in my femur, add some extra bone growth stimulator magic, a new pin in my knee and a new, heavier duty pin in my hip. in the pic, you might be able to see that the head of the rod is separated from the body of the rod below the pin.


So, I had to sub out all my work for the next couple weeks, people were awesome and covered for me:) so I'll work monday morning, then hafta be at
Highland at 2:45pm for surgery at 4:45pm. I'lll be in for 2 days or so; last time, we asked for a private room, they hooked me up with a german roommate who was also demented and awake, yelling all night long. The second night i got a private room, slept much better. Lesson learned: will cry til they give me my own room this time.  Also planning to ask for a spinal block. Last time, they didn't realize how much pain medicine i normally take and so didn't give me enough extra for when i woke up.  Unhappy situation. Spinal block sounds much more friendly. Anyway, please send happy vibes and gummy bears on Monday. Will let you know how it all works out...:)

$&@!?&$

Waaaaaaah. The pain in my hip is from the rod that was put in my femur last August. It's broken, bent by the force of walking on it with the fracture. How in the world does titanium break? No idea, I'm still baffled myself. I had an appt with the ortho onco people yesterday, and at first felt like they were going to tell me it was muscular, and needed physical therapy, I was so hoping for that. Then, they called in dr rozier, a big dog, and he put 2 X-rays side by side; one current and the other from right after surgery last year. I could only see a slight difference, but his expert eyes saw more and he felt strongly that the rod had bent and was probably broken. CT scan this am confirmed his suspicions and I'm on crutches, wheelchair to avoid putting any weight on it. It's pretty much impossible, and so painful. I can't believe I hafta have surgery again. Fuck. Have an appt tmw to discuss surgery. I'm assuming ASAP. Why couldn't this happen in the winter when I would just miss work?! I don't wanna change any of my plans for the summer, none of the trips we have planned, I refuse! I'll ride in the rv and sit in my wheelchair if I hafta. Col, you'll help me go potty and shower won't you?! Fuuuuuuuck.

Xeloda is workin!

News from PET scan is awesome, the oral chemo med Xeloda is doing its job and getting my spots under control:) my onc very happily told me last week that several of the spots that were hyper metabolic last scan are much less so, or completely gone leaving just a scar behind. Now that's not to say the cancer is gone, it's just kicked back to a lower gear for now while it figures out a way past the xeloda. With a little luck, I'll be able to stay on this med for awhile, it'll keep working and the side effects will stay manageable. Right now it's just desert dry hands and feet, lovely and scaly and ugly ripped off nasty lookin toenails. I've considered saying I'm a ballerina or a marathon runner to explain them- so much sexier than cancer! I'll have PET scans every 3 months to make sure it's still working. Even the lesions on my liver, the ones that worry me the most, are responding well. Yahoo! I'm struggling with my hip the last few weeks. At first I thought it was my knee, then the rod in my femur, finally pinpointed the pain to my hip and then it kinda radiates from there. I can hear the screw or pin or whatever it is clicking and sometimes it reaches out and grabs me and the pain is intense- takes my breath away. But then it goes away and I'm fine...weird. Have dr appt with orthopedic onc on Wednesday, so I'm looking forward to finding out exactly what's wrong and how soon can they fix it cuz its no fun hobbling around. Makes me feel old!! Anyway, send some good thoughts on Wednesday if you think of it, I'm hoping it's muscular and I just need some physical therapy or something easy...no surgery. Thanks!

PET scan today

Hello! On my way to have my iv placed then on to PET scan. Theyll find out today if the Xeloda is working or not. Will said this am kinda lose lose situation cuz I'm hating the side effects but I want it to work! Ah well, it's out of our hands. See see what the docs say:) I'll post as soon as I know, my oncologist appt isnt til next week but I'll call and bug her tomorrow. Send good thoughts!! Jen

Poor me!

Waaaah! My hands are SO sensitive- its crazy! Typing on my iPad doesn't bother me, thank goodness, but almost everything else does. I'm constantly putting lotion and bengay and creams on my hands hoping to stave off the dryness that seems to be the cause of the sensitivity. Plus, I had a little incident with Sasha, Alex's friend:) she accidentally stepped on my toe, the toe that had a toenail that was barely hanging on, and caused a little bloody drama.ive never seen blood bubble out before...it was bubbling out of my toe and filled up my Birkenstock! Anyway, now I have the sexiest feet ever, bits and pieces of toenail and gross looking skin. Attractive. Poor Will, he's a fussy boy when it comes to pedicures and there's nothing I can do for my feet right now. My little nail person would run screaming, I'm sure. What else? Oh my eyes and nose are constantly running trying to compensate for how dry they are.so I look like I have severe allergies on top of everything else! Woohoo! Please cross fingers for me that this xeloda is working and all this drama is worth it. I can't cross my fingers...hurts! You do it.. Thanks:)

Better:)

Hi! I talked to dr hug, and she approved a change in the chemo. Now I take it one week on, one week off, hopefully that's easier for my body to handle. I haven't taken it since Saturday night and it's already better. Amazing. I also got a call to schedule my next PET scan, and then I'll know if it's even working, and if the pain and side effects are worth it. I found out about a new liver cancer treatment today too, called theraspheres, little glass balls that are injected directly into the lesions in the liver, with radiation inside that slowly breaks down and directly destroys the cancer. Sounds good to me! I'm gonna ask dr hug about it at my next appointment. I'm up for anything!!

Uncle

Ok, I give! The soles of my feet are killing me! They almost feel like they're not part of my body! I smell like a pharmacy today, alex had great idea to use this Tylenol cream on the soles of my feet- its awesome and really helps decrease the sensitivity but it's stinky!! My palms are ultra sensitive too, I've been wearing the same jewelry for years but I keep hurting myself on it today. My palms are a little red, the soles of my feet are very red- apparently this chemo actually collects in the extremities and makes them burn. Nice, right?:)
I tried sandals yesterday- bad move- have clogs and socks on today and feels a little better. it's my week off chemo, so I'm hoping it wont get much worse. Fingers(ouch) crossed!

All is well...

Hi! I've been on the Xeloda for 4 weeks now (2 weeks on, 1 week off, now in 4th week.) and so far so good. I had an appointment with my oncologist last Friday, as well as my Zometa treatment.  She was thrilled that I haven't experienced any significant side effects from the Xeloda.  When I asked about lack of side effects relating to it not working, she said nope, but did increase my dosage since i seem to be handling it so well.  But, I haven't increased it, because every night since I've had pain and tingling on the bottoms of my feet.  Also weird dreams about my foot being broken and waking up with terrible pain in my toes. So, no increase yet for me...waiting to see if this is as bad as it gets.  When i wake up for the day tho, my feet don't hurt, only during the night.  weird, eh? So, I'm sticking with 3 pills in the am and 3 in the evening, and holding off on the 4th pill at night for now.  Have a message in to my oncologist to see what she thinks.
I'm so hoping this is working, I can't wait to see the results in May.  Doc says she has one patient that has been on it continuously for 5 years - not the norm, but it is a possible maintenance drug if it works to control the cancer.  Hope hope!!

Interesting!

Last Friday Will and I went to see my new ortho doc cuz my surgeon who put the rod in my femur moved to CA:(  On the last PET scan as well as my most recent one, the radiologist mentioned seeing a fracture in my right femur (the one with the rod in it.) but, the ortho didn't see it.  So, Will, with his super deaf vision, showed the fracture to the new doc, and she is now a believer:) It's been there since November, she just thought it was part of the original surgery.  Anyway, now we know why my leg still hurts, but there's nothing they can do for it.  But, at least I know why it hurts! The ortho thinks there was a very thin amount of bone around the rod originally, and when i went for a lovely walk on the Tampa beach with my friends last year, it fractured.  Again, nothing can be done, but she seems hopeful that my bone will heal itself.  Will expressed his doubt, given the poor condition of my bones to begin with, but i like pretending:)

I'm doing well on the Xeloda oral chemo so far, nothing major to report:)

So far, so good

I seem to be responding without any side effects so far to the new chemo meds. If my past experience is indicative of my "normal", tho, I'll probably be hit with side effects later. Ahh another blessing of a slow metabolism!
Ann Marie brought quiche and date snacks last week, Leanne brought dinner Friday night and Jill brought dinner last night- awesome!I'm so spoiled! I'm off completely today with only taxi duty, so it's been a very relaxing, sunny day here:) doggies so happy it's toasty warm on the patio.
Back to work tomorrow, keeping fingers crossed that this med doesn't make me sick. Have a great week!

$#@&^!@#

PET scan results are not good - knew it the minute I saw the expression on my Nurse Practitioner's face.  More cancer in my liver, spine, hip, and ribcage.  Old lesions are "metabolic" again, lighting up on the PET scan, back being nasty again.
So, plan B: new chemo drug called Xeloda.  Good news is, it's a pill, so no weekly visits to the infusion center.  Side effects are said to be minimal but everyone is different, so we'll see how it treats me. Major worry for me is the warning of more neuropathy and Hand and Foot Syndrome which is  a reddening and increased sensitivity of the hands and feet.  Hopefully the hand and foot syndrome fairy will pass me by; I can't imagine interpreting would be much fun with that!
I'm feeling ok about the news; luckily they don't give me too much time to wallow; I start the new drug on Sunday or Monday depending on how I feel.  I'll keep you updated on the side effects!

takin 'er easy:)

Hi! I had my PET scan yesterday, will be getting my results and an action plan on Friday when i have my oncology appointment.  Only a little drama with the IV; I always have to go to the hospital to have the IV placed because the peeps at the PET scan place scarred me for life when it took them 7 tries and they finally put the IV in my FOOT!!! one time, a couple years ago. So, now I go to Strong and have either their crack IV team, an anesthesiologist, or my onc nurses if they're feeling brave, place it for me then i drive one armed to the scan:) awkward but way less tears that way!!

I've been off most of last week and all of this week...its been awesome:) I'm feeling good, just the neuropathy in my feet and some pain in my middle back vertebrae.  My feet feel like I've got shoes on that are a couple sizes too small - pressure and tingly.  Strange that it keeps getting worse even tho i haven't had chemo in almost 2 weeks. :( keep hoping it'll go away.  But other than that, I'm good!

Will update on Friday once I get the news about my scan results. Later!
jen

One more down, one more to go?

Had another treatment on Friday, could be one of my last of this kind of chemo, depending on PET scan results after March 5.  I never really know what to hope for...no more chemo? That might mean it's not working anymore, so we don't want that...more chemo? that might mean the current one stopped working, don't want that...tough to know what to wish for:)


Little bit of a rough day yesterday, flushed, nauseated, very tired, but woke up today feeling fine, so couldn't whine for long.


Nothing new to report, same numb/tingly issues with my hands and feet, little swollen from the lovely steroids, and always ready for a nap!


Hoping to go for a massage this week sometime, off to have dinner with my sissies now.  Happy Sunday!

Is toxic bad???

hi!:) I had my most recent chemo treatment on Friday (i've lost track of how many that is, now!) and ended up receiving a lower dose than I've had so far.  I've been having some side effects that make the onco people nervous; toenails falling off, numb/sleepy/painful toes and feet, inability to grip my coffee cup safely.  All of these are signs that the poison they're pumping into me to kill the bad stuff is having some toxic side effects, so they reduced the strength by 20%.  My doc says it should still be as effective (which of course made me say, "then why didn't we do 80% all along?" and made her roll her eyes;)) I'm still able to interpret, the moneymakers are still fully functional!!

What else? My right femur is still bothering me, i'm still limping around and feeling foolish, but i'm dealing, and looking forward to spring when i don't also have to deal with the wind and the cold.  Next up is a pet scan, then we will decide what treatment to pursue next.  Best case scenario, they put me back on an oral med and pretend I'm not sick again:) Possible they will suggest i stay on this chemo as long as it's still working, possible this one has stopped working and they will want me to try another chemo...just hafta wait and see:)

My dad sent me a little metavivor pin! So sweet and he has one too! woohoo, go metavivors! Now I'm exhausted...naptime.

Keep sending me positive vibes, and i love hearing from you!

Relay for Life

Hi! So, this is my week off, my little breakski from chemo, plus i went for a massage with Ginny this morning AND ate 2 chocolate peanut butter brownies!! It doesn't get any better!! I'm feeling well, happy to have a weekend in front of me.

My friend Kayla from work asked if she could walk in my honor for the Relay for Life in Henrietta this year - I'm floored, she's such a sweetheart, and i'm so honored to be one of the people she's walking for.  Please check out her page at

http://main.acsevents.org/site/TR/RelayForLife/RFLFY12EA?px=15598239&pg=personal&fr_id=36544

and provide any support you can- you can even walk with her if you're up to the challenge!  I got a luminary for my sissy who has cancer and for my grandfather, who died of cancer when I was 10.  It's a cool idea, they put messages on the luminaries and they light up the night at the ceremony June 9-10.  I'll be there - hope to see you there as well!!

www.metavivor.org

Too much free time today:) I found this website, which focuses on metastatic breast cancer peeps.  from their website:

The concept is simple:  Since thirty percent of all breast cancer patients develop MBC -- a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC.  At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.

"People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year.  Survivors think they are safe because they are 5 years out ... or were diagnosed early ... or were told they are 'cured', but MBC plays by its own rules." says METAvivor President, CJ (Dian) Corneliussen-James. "People diagnosed at stage 0 as well as 30-year survivors can and do metastasize.  You feel great one day and the next day learn you have MBC.  Your life can change that fast."

METAvivor has led the way in showing what can be done at the grassroots level. An all volunteer, non-profit organization, METAvivor was founded and is run largely by persons with MBC. Established in 2007 as a local (Annapolis MD) support program, the group began a fundraising campaign in 2008, became a non-profit organization in 2009, began awarding its own MBC research grants in 2010 and now, in 2011, is launching its 30% for 30% campaign to ensure research and support for metastatic breast cancer are commensurate with the prevalence of disease

PLUS! They have their own ribbon! I need a new ribbon!! :) Anyway, seemed like an organization worthy of our time and funds, or at least our consideration and the recognition that MBC needs more attention. One part  i found especially interesting is a discussion on feeling closer to other metastatic cancer peeps than other breast cancer peeps sometimes, because my breast cancer diagnosis seems so long ago, and on the surface has so little to do with what i'm facing everyday (it's the core, the reason for it all, and yet seems so irrelevant.).  It's a strange group to be a part of; not a survivor, not wanting to be a victim, not cured, constantly in treatment...it's nice to hear other people's thoughts about where they fit.  xojenox


for more discussion on this topic: http://gaylesulik.com/2011/05/dian-corneliussen-james-a-woman-on-a-mission/

Treatment #14, cycle 4

little benadryl, little dexamethasone, little prilosec and a little poison....mmmmmmm, yummy. so, the nurse felt that my neuropathy was normal and expected - i never can shock these people.  so, just gotta keep warm and be careful so i don't injure myself cuz i can't feel it, mostly in my left foot. interesting!

my right leg is bothering me more, where they put the rod in, in my thigh. last week i had my zometa treatment, and one of the side effects is bone pain - lucky me- so I'm thinking that's why it's bothering me more.  ugh enough about me, so boring!

maybe next week will be more fun! I'm hangin' in there!!!

all good:)

hiya, nothing new to report, just same old same old:chemo last week started new 3 week cycle. I'm feeling good, but have started noticing some neuropathy in my feet and hands.  I'll talk to the nurses in chemo on friday.  i know that sometimes they will reduce the strength of the taxol when neuropathy is a side effect.  there's lots of info on the inter webs about it;) some people have it all the way thru chemo, others have it last 5-8 months after chemo is finished or even permanently.  let's hope that's not the case - the last thing i need is neuropathy in my hands...those are the $$ makers!!! I had another massage last week (thanks Cheryl!!:)) and am hoping to schedule another one next week.  I read that massage and acupuncture can help with neuropathy; no luck with acupuncture so far, but any excuse for massage is ok by me!

Next Dr appt not until Feb 10, so I'll ask about my numbers then :) From the most recent blood test, one number is up ever so slightly, one is down just a little.  Not sure how significant that is, but will post when i know.

"New" CEA Antigen #s

Just got test results back from last Friday, my monthly barometer of how well the chemo is working.  My #s are the same! hmmm...im going with the explanation that they were already SO LOW they couldn't go any lower! That'll hafta hold me til next friday when i go back to see the doc:)