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Josiane Dixon (josigirl13)


June 22, 2007


josigirl13


Sacramento, California


2-13-76


Acute Lymphocytic Leukemia


A.L.L. Acute Lymphoblastic Leukemia


6-20-07


Cancer Survivor


seeing other people's reactions when I tell them I have cancer.


I had spots that looked like bruises on my skin and my left sinus was completely clogged. I had none of the traditional symptoms of leukemia.


I have 6 months of chemo:
1. Daunorubicin, Vincristine, Asparaginase, Prednisone
2. Cytarabine, Etoposide
3. Methotrexate
months 4, 5, and 6 are a repeat of months 1, 2, and 3. I also had 6 doses of intrathecal methotrexate (chemo injected into my spine).




josigirl13's Cancer Blog

June 29, 2008

One yearViews: 126

Greetings bloggers! Long time no see! Thankfully, the last six months have been focused on getting healthy and rehabilitated to my former self. I am one year from my diagnosis date and happily cancer-free! YAY! I went back to work at the end of January after a nice long trip home to Minneapolis and a fantastic vacation in Key West. I started back in misdemeanor trials and it took a little while to get back in the swing of things. Almost everything had changed: new supervisor, new leads, new co-workers, new secretaries, new office mate and most difficultly, new expectations. Once I did my first trial though, it seemed like I was back on the horse. I won that one and one other and was soon promoted to the Domestic Violence unit. I started in DV at the beginning of May and couldn’t be happier! I finally have my own office and I am loving the work. This is really why I became a lawyer and all of those social work skills from College are coming in VERY handy. It’s a diverse unit and I get to work with a lot of felony attorneys who have a wealth of knowledge and experience to share. They like to share it over lunch, telling war stories on the couches in our unit. I find myself smiling more these days.
My doctor assures me that my health is good and that I should keep following the program. I am on 6MP and an anti-biotic daily and take methotrexate pills once a week. My blood counts are good and no sign of any “polka dots” on my skin. We have monthly checkups for the next 2 years and after that my chances of relapse decline significantly. I recently started working out with a trainer, John. He was recommended from a friend at work and he is really kicking my ass into shape. It was unbelievable how much muscle I had lost during those 6 months of chemo. It was very frustrating getting back in the gym and not being able to do any of the things I used to be able to do. But John had me whipped quickly into shape and I am starting to amaze myself with the progress. He even has me running on cardio days! I have been feeling great as a result and my energy level has really bounced back. Now that the weather is nice it would be great to go hiking in the mountains, and enjoy being in good physical shape, for the first time in years.
I have been out and about with my friends on the weekends and recently took a trip to Portland Oregon just for fun. I had never been there and had heard great things about it so some girls and I decided to pop up there for the weekend. We had a great time and ate in some fantastic restaurants. This peruvian restaurant in the Pearl District really blew my mind.
I’m sorry I haven’t had time to blog much lately. I have had so many of you asking what’s new with me and asking for a post and missing my postings so I thought on this, the one year anniversary of my diagnosis I would satisfy your requests and curiosity. I am posting some recent pics too, because I am sure you are all dying to know what my hair looks like these days. I am continuing to will it to grow faster but it’s finally getting to a point where I can stand it.
Enjoy! Miss you all! Smile!
Josi

You are such an inspiration. So glad to hear you are doing well.

Welcome back, it looks like you are off and running
again,

Hug Sherri

Hi Josi, You look absolutely fantastic in the pics you shared with us AND CONGRATULATIONS on your 6th month anniversary! God is so…good to us and I believe every trial and tribulation we endure only makes our life sweeter and our constitution that much stronger (no pun intended :) Healing Thoughts, Lily, a 15 month cancer free Mainer!

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December 10, 2007

Free at last!!!Views: 2218

I’m sure many of you already know, but the word is official: I am out of the hospital and DONE with chemo! Hooray! The end was decidedly anti-climactic (involving a half-day’s wait for test results) but in any case the worst is over. Now I will have 2 plus years of “maintenance” which basically means I will be taking methotrexate pills and mercaptopurine pills, and an anti-biotic just to make sure I don’t get sick. I’ll have to see the doctor once a month and probably have a blood test and make sure I don’t have any new skin spots. I am already feeling more energetic, which is a good thing since I have so much Christmas shopping to do! I am getting excited for my trip to Minnesota for Christmas; they already have at least a foot of snow so I am sure to have a white Christmas! I hope that all of you have a wonderful holiday. To my fellow survivors: I hope that you all feel well and can enjoy the holidays, let others take care of you, curl up in a blanket and stay warm, I hope you can taste the food, smell the tree, feel the warmth of the fire, and see the new year as the time you will conquer this disease!
Happy Holidays,
Josi

congrats on making it through – I am so glad you are on your way to a great holiday that you so deserve – enjoy.

Great Josi,
I hope you have the best christmas ever.

That is fantastic! What a great gift to be done with chemo. Enjoy your holidays.

YOU are my hero! congratulations! Enjoy the holidays and the trips to follow!
WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO! See you so very soon. Merry Christmas! I am so happy that your year is finishing out this way, with you getting stronger by the day.

Congratulations! I am so happy to hear you are out of the hospital and doing well. Katie

Josi that is soo awsome My 2 year anniversary was sunday so december is aq good month!
I hope you have a wonderfull christmas and new year!

Im extremely happy that the white christmas is with me and only me! and everyone else here….. But Congrats dodo, youve been amazing! i love you
kisses

WAY TO GO GIRLFRIEND! I wish you all the best, enjoy your snow filled Christmas holiday in Minesoooootah. You are an inspiration to many of us who have followed your postings Josi. Wishing you an abundance of His Blessings! Shalom, Lily

Hi Josi
I hope you have a happy, warm, and relaxing Christmas! I am so happy to learn that chemo is over! Best wishes and Love to you and all of your family. Jan

Oh my…..I am sooooo HAPPY for you! Enjoy, enjoy, and enjoy! :-)

Congrats on being done Josi! I am so happy for you. Have a wonderful holiday and may the new year bring you health, happiness and love!

I am so happy for you. Have a wonderful Holiday and don’t look back.

I am so, so happy that you’re done with chemo!
...but what am I supposed to do now when I’m procrastinating at work without your blog to keep me occupied? Seriously: I don’t think you’ve considered the ramifications of your being cancer-free on ME. So selfish ;-)

I love you. Merry Christmas to all!

WAY TO GO JOSI!The visit to northern MN was a God send for me…..THANK YOU!
Love Always…..Casey’s Mom….Joni

congrats josi! this new year will bring good things. a birdie told me you are heading to paradise in key west… enjoy and live it up :)

-christie

Here you go girl – on to a great 08. lots of love, hugs and kisses….

I am happy to hear that you are doing well. Stay strong! Take Care

Hi Josie>

I have been away for a while, I would like to know how things are going.

Hug Sherri

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November 28, 2007

ThanksgivingViews: 2327

Yes, I made it out in time! They let me out of the hospital the monday before thanksgiving so I was able to spend it with my family and friends. My mouth had healed enough so that I could eat a little bit of everything. My appetite was not that great and my stomach was feeling queasy all week so I didn’t go crazy on the turkey and stuffing. I was still very tired but SO happy to be out of lockup! I am now feeling pretty good and will be back in the hospital on monday for MY LAST ROUND OF CHEMO! Hooray! I will be in from december 3 thru about the 5th or 6th. I am having high-dose Methotrexate, which is the same chemo I had in September. I was feeling pretty great in September so I plan to feel great in December. The doc says I can go back to work in February so I will be spending January trying to get my body and mind back in shape. I don’t know if I can spend a whole day in heels! It’s amazing how much leg strength and energy that takes! Well, since it is the holiday season, the season of Thanksgiving, I thought I would share a little list of things I am thankful for this year. 2007 has been a shitty year, but its amazing how many things there are to be thankful for in spite of it!

I am thankful
to be out of the hospital
to have family close enough to help take care of me
for not having to wear nylons for the last 6 months (especially in August)
for having a fantastic job and co-workers that will wait for me to get better
for having this blog that allows me to reach out and for others to reach out to me
for being forced to de-stress myself
for being reminded that I have to actually pay attention to my body
for not having to go to the dry cleaners for 6 months
for having time to cook
to have so many friends, family, acquaintances, and people I don’t even know tell me I am loved and supported

Okay, that’s enough for one posting, but I can think of dozens more reasons to be thankful this year. I hope you all had a wonderful thanksgiving and will join me in celebrating next month the end of my chemo!
Peace, love, and hope
Josi

I’m so sorry it’s been such a shitty year for you -I cannot even imagine what you are going through. But your strength and following your journey through your blog is an inspiration to all and a sharp hit on the head to remind us that every day is a gift. I’m thankful for that. Wishing you a quick and as simple as possible chemo treatment!

Hi Josiane,
My name is Jennifer and I’m an associate producer for the Montel Williams Show. I read your blog and am really inspired by your courage and would like to speak to you about sharing your story. Please contact me when you get a chance at j_stryker@montelshow.com. Thank you.

Jennifer

Auntie Josi –
Our mommy has told us about you and how brave you have been in these last months. She said that even when you didn’t want to be, you always worked hard to have a positive attitude about getting better. She told us that we have to be like you and count our blessings. We can’t wait to meet you and hear more stories about how you and our mom went into the ocean with your clothes on.

Love,

Evija & Laela Domanski

I’m thankful that I have you in my life.

You really are an inspiration; and apparently are now being courted by talk show producers? Nice! You may have to pass, though—I’m pretty sure Ernie won’t give you the time off to do it, if the offer presents itself ;-)

yo. I hope you have a wonderful pre-LAST ROUND weekend… raining down here today, and I am channeling you and me on couches, under blankets with periodic trips to the kitchen for mac and cheese, so thought I would give you a shout out. I am so proud of you Dude! love you.

Hey Josi! Last one, Yippeeeeeeee. P.S. If you meet Montel I will be so jealous.

Hi gals I am so happy to hear that hose of you have been contacted to appear on the Show. Let us know when you will be on the show.

Love You all.

Sherri

Hi Josi, after reading your blog I feel so sad that a young person like yourself has to journey through this barbaric disease. I will keep you in my healing prayers and wish you a happy, peace filled Christmas and New Year! Shalom, Lily

Hi Josi!

I did a search for you on Google and got this site. I’m really sorry to hear about this but you sound SO STRONG and POSITIVE! I know you’re going to kick some serious butt – you’ve always been a tough chick… so keep on fighting! I don’t really know what else to say except you sound just like the awesome girl I remember from Junior High and High School… When I think back to those days I’m remembering the day we skipped class in Ninth Grade, got busted at the Community Center, then went to your place and hung out all afternoon and got caught at some point. Not sure if you recall that, but I don’t think I skipped school again until Senior Year – that freaked me out! Then there were the days you came back in the summer and we hung out with all the skater boys… remember that? Good times – for sure. :) Anyhow – I just wanted to let you know that I’m out here – still in Minnesota (yup – never left)... I’ll be thinking of you. TAKE CARE and get through this last batch of chemo. Stay strong!

Tori Hansing

Hi Josie!
I wanted to say hi and let you know I am so glad to hear that your spirits are high. I know what it means to have a bad day but hopefully those are far and few in between. I’m still on the transplant list, waiting for a kidney but I have faith it will happen when it’s supposed to happen. You inspire me Josi!

Miss you and can’t wait to see you in February!
Catalina

I know I”m soooooooo late, but I’m SO INCREDIBLY THANKFUL FOR MY BEAUTIFUL GORGEOUS AMAZING INTELLIGENT FUNNY DETERMINED KICK-ASS FASHIONABLE WONDERFUL ALL-FUZZY-INSIDE LAZY-IN-THE-MORNING STRONG AMBITIOUS LOVING TASTEFUL BA STUCK-IN-THE-NINTIES-LIKE-EVERY-AMERICAN-IS-STUCK-IN -THEIR-HIGHSCHOOL-YEARS MUSCIALLY-INLINED COOL-CAR-DRIVING DESIRABLY-SEXY KISSABLE sister. mwwwaahhhhh
kisses
doot

yo. too late to call you back. I will tomorrow.. can’t wait to hear what is up. So few days to go…..

Hi Blog readers… just wanted to let you know I talked to our girl Josi this morning, at 8:29 a.m., the last bag of chemo was empty! She is likely to remain in the hospital for one more day, good Dr. Sayegh wants to check out her lymph nodes one more time via CT Scan.. so give her a shout out if you can today. Jo.

As promised,
In an article by Tara Mulholland, titled, “For jetés, pliés and cobblestone streets: The flat is back,” it is stated that, “while haute couture and needle heels may still form a prominent part of Paris’s fashion heritage, away from the rarefied air of the Grands Boulevards an edgily alternative cobbling tradition is creeping back into style: the flat.”
That’s right, J-Nice. Read on . . .
In the article, Elisabeth Fourmont, an American fashion journalist who blogs out of Paris under the pseudonym La Coquette, said by e- mail, “the French look for women is a more straightforward, less ostentatious sort of pretty. Also, they like to walk very fast, so flat shoes are good for that.”
They like to walk very fast?!? Really . . . As fast as you when jaunting into the courtroom to send the latest crackhead arrestee to the bighouse? I wonder . .
The article cites Camilla Morton and the style guidebook “How to Walk in High Heels” where she advised against heels: ” ‘In Paris, walk in the road and don’t attempt picturesque cobbles,’ she wrote. ‘Avoid romantic strolls or shortcuts going across pedestrian wooden bridges, unless you intend to carry your heels, in a nonchalant way, and risk splinters.’

Avoid romantic strolls?!? Hah! I think not!

Mulholland explained, “The hazards of steep hills, the high chances of getting swept into a demonstration march and (less romantically) dog mess, all combine to make flat pumps a far safer . . . footwear option.”

I know you can’t turn down a good old-fashioned demonstration march, especially those involving harsher penalties for those good-for-nothing crackheads you like to send to the bighouse.
And speaking of ballet flats, “The shoes themselves, still painstakingly made to support long hours of jetés and pliés, are famously as comfortable as they are beautiful, and draw in stylish bohemians in droves.”
Ahhhh, bohemians . . . my favorite!
For the full article, see http://www.iht.com/articles/2006/10/02/reports/rflats.php?page=1#end_main
And, for your flat shoe viewing pleasure, go to http://www.iht.com/articles/2006/10/02/reports/rflats.php?page=1#end_main
I am certain you will find more than one adorable flat shoe. And, as they say, “Once you go flat, you never go back!” or was it, “Once you go flat, there’s no pain in your back”? Either way, the moral of the story is: Heels are stupid anyways and were probably invented by a man.

Josi, I just got to read your latest posting since I have not had access to a computer for a few weeks….Here’s to January and 2008….for better times.
xoxoxoxoxxo

The Montel show contacted me also, but I cannot fly because of blood clots. I guess they did the show and it will air this comeing Thursday…. Dec. 13.

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November 15, 2007

Quelle Dommage!!Views: 2589

That is all I have to say about being back in the hospital. On Tuesday evening I was just getting home from a long day of blood transfusions, which usually make me feel like a new woman (perhaps its having someone else’s blood in my veins :)), only to feel fairly lethargic and lay on the couch watching TV for much of the night. I had spiked a low fever during my transfusion, just low enough so as not to have to call the doctor. I took some Tylenol and was done with it. I felt fine, no chills, no sweats, no headache, no problem. Yeah right. At around midnight when I finally hauled my lazy ass off the couch and into the bed I took my temp. Uh-oh. 102.1 Have to call the doc. Whoever is on-call is going to be soundly sleeping and wondering why I hadn’t taken my temperature earlier in the night. WELL, they must have been REALLY sleeping because 30 minutes later still no call-back. Like the diligent lawyer I am (follow up, follow up, follow up) I called again and Brian at the answering service politely put me on hold while he phoned the doc. Meanwhile my temp was up to 103.3. When I finally get the on-call doctor on the phone he asked me for my white blood cell count about 8 times. I couldn’t figure out if this was because it was incredulously low (does not inspire confidence) or if he was still sleeping while on the phone with me (does not inspire confidence). I basically had to tell him to tell me to come to the hospital. I know this is what MY doctor wants to happen, I want to take some tylenol and a sleeping pill and call it a night. So at 1:00 am early wednesday morning I was admitted yet again to the lovely hotel SGH. Or “lockup” as I like to call it.
Confident that I will only be here less than 24 hours, I don’t pack anything, only the essentials: my ipod, a crossword book, my CSC tips book, bottled water. As it turns out you CANNOT avoid lenghty hospital stays by not packing. They did some blood cultures to try to find the infection that is causing my fever, they put me on some IV antibiotics until they figure it out, they did a chest x-ray to check for pneumonia (clear, thank goodness), and said good night. The next day my doctor said I could go home on Thursday (obviously a little joke in his mind) but that is just NOT going to happen. I will be stuck here for at least the weekend and if the fever persists then it will be longer. Quelle dommage! This is a little french saying meaning “what a bummer” which I always thought was a funny phrase to be learning in French class and have always wondered whether the french even use it. probably not. they probably have something involving swear words. i wish i knew THAT phrase. my current English favorite is: FUCK CANCER. Cancer, quelle dommage. There, a combo! :)
Peace, love, and give thanks for your thanksgiving.
Josi

Ah Josi, that just SUCKS! Really does. I hate hospitals too and am doing all I can to avoid ending up there again. It really is like lockup. Girl, hang in there. You’ve got Thanksgiving and all that food to look forward to. Hugs…Grace

That sucks! Sorry to hear you’re in “lock up” again. Feel better soon!

When are you going to be in Key West? We’re going ot be there for New Years…I seem to remember January, but perhaps later. Let me know if we will cross paths!

Jan 5-12th in Key West. 50 days and counting!

Like your new phrase. As childish as it seems, I can not bring myself to even say, or at times spell the c word. On top of getting the disease, I appear to be mental. That actually may help me.
Regarding your chemo, I had to go 5 days a week 8 hours a day for 3 weeks, then one week off to make a cycle. I see you also are going for about 8 hours a day. If you don’t already, though I’m pretty sure you must, look into a chestport. I had a double placed inside of me. They plug the chemo needles into the receptacles of the port (box) under your skin, where the tubes run to the aorta. Chemo through the veins in the arms burnt our my veins too quickly. Anyway the port, what’s cool about it, is when the nurse leave the room, you can open the drip suckers up high. I was able to, bny opening both of my tubes up, cut off up to 2 hours of my chemo time.
As for the hospital, do whatever you can to stay away from them (within reason of course)/ I mean, living with “it” sucks but the alternative of not living> sucks worse.. ANyway the prob with the hosp is they tell you to rest, but every firckin 45 minutes they are either sticking a needle in my ass, a thermometer in my mouth or a cuff around my arm. Then they ask if I slept well.
I’ll leave you with my pissed off moment My oncologist tells me all of the shitty things you get told with such a disease, less than a coinflip I’ll make it, and I’m in my 30’s,then about ten minutes later tells me I have a bad attitude. Is she fing kidding me.
Anyway, please keep hanging in. I’m told a positive attitude helps, you may want to try that, I seem unable to do so. And no matter what they (the labcoat peep ) tell you, it isn’t Gospel. I was told to make arrangements, ie less then 50/50 chance they said, and i’m here, and I’m a “guy”. We all know (I admit it) females are MUCH MUCH stronger than we are, so you will be fine. I’ll say a prayer for you. For some reason I stopped being able to pray for myself, but still able to do so for others.

Hi Josie, I love reading your blog, we did a toast to you the other day at Jo’s cheese pump party for Alia’s fundraiser. you are an inspiration as are Alia and Jo.
an old friend of mine from High School has a 3 yr. old girl that is under going chemo right now for (ALL-Acute Lymphoblastic Leukemia… if you get a chance everyone please read it, I nearly had tears in my eyes.I can only imagine how hard it is for a 3 year old to comprehend this illness.

http://www.shmc.org/index.php/articles/1130

They use it dude, at least their were frenchies saying Dommage when I was there circa 1996. I think you could say Cancer, Va-t-en! that would be more street.. I will work on a precise translation for you. Heard you are released.. from a little birdie… YAY YAY YAY

Hi Josi,

I believe the word you are looking for is “Merde”—the naughty little F word. Sorry things are so tough, I hope you’ll be able to head home to MN for the holidays. We will continue to pray for you!

We miss you,
Kim (and Chris)

Hey baby! I missed you yesterday. Meant to call you. Well it doesn’t sound like such a pleasant experience and all, but you’ll make it. You’ve got amazing friends to help you through it. call anytime. Hope you had a FAB thanksgiving. I lurrv you
kisses
doot

p.s. nathan hated the french fry dipping sauce. i think i should dump him….but not really

lady-I totally got my mom’s gravy recipe.. I am researching where to buy turkeys in key west.

This does suck Josiane ! I HATE cancer so much! I am praying for you everyday Josiane. Sue

Hey Josi! Just wanted to drop you a line to say I was thinking about you! :) Happy Holidays!

Hi Josiane. My name is Lauren and I just joined blogforacure. I also have A.L.L. Do you have B-Cell or T-Cell?

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November 10, 2007

Sweet NovemberViews: 2636

I finished my 5th round of chemo on Monday and am back home. Hooray! I spent 5 days in the hospital getting Cytarabine and Etoposide, the ugliest of my chemo drugs. Damn that Cytarabine is nasty stuff! The chemo treatments take about 8 hours to go into my system through an IV, so it is a busy workday of killing cancer for 4 days. My hospital stay went pretty well, I had good nurses and my aunt Suzanne to keep them on their toes. My doctor was out of the country when I was admitted and did not return until the day I was discharged. I was SO happy to see him on Monday! It’s amazing how much I rely on him, and I don’t think I realized how much until he was on vacation for 3 weeks. After my chemo treatments I had 3 more doses of the Kepivance—the drug that is supposed to be preventing mouth sores. I am also getting a shot of neupogen every day that is supposed to help my body grow white blood cells. I now have to go to the cancer center every day to get a blood test and a shot, and usually some sort of transfusion of blood or platelets. I get kind of bummed out when I have to spend my whole day at the cancer center, but then I remind myself that it would be worse to be in the hospital. I am working really hard to stay out of there.
A word about Kepivance: it seems to have worked pretty well. When I was in the hospital I had two sores on the roof of my mouth but they cleared up within 2 days and were never very painful. My last dose of the Kepivance was on Tuesday and yesterday I had some soreness in my mouth but no “sores”. Today my mouth hurts, I took some morphine for the first time this round, and I had an Ensure for breakfast and a Jamba Juice for lunch. I am hoping my white blood cell count comes back up before the mouth sores get out of hand. One side effect of the Kepivance is that I have pretty much no taste buds. I guess it’s a good trade-off since at least I can eat food, even if it doesn’t taste like anything. I am really hoping to have regained my sense of taste and to have avoided mouth sores by thanksgiving.
Before I was admitted to the hospital my mom and step-dad took me on a drive out to Lake Tahoe. It was one of those days that was bouncing back and forth between being sunny and being overcast. The lake was gorgeous and looked cool under a sky that was threatening rain and sun simultaneously. We had a nice lunch in Truckee, a little town on the north side of the lake. I will post pictures soon. Yesterday, my dad and I took a drive through Napa on a little two lane road you pick up outside of Davis. It’s lovely there this time of year with all of the leaves changing on the trees and on the grapevines. (Jo, I was missing you!) We had a little lunch in Napa then headed to the city to have dinner with my brother and sister-in-law. It was nice to get out of the house and have someone chauffer me around!
That is pretty much it for the update. Overall I am feeling tired this month and am trying desperately not to get sick. Seems like there’s a cold going around but I haven’t gotten it so I must be doing something right. I am laying low and waiting for December when the chemo should be easy and I am doing some traveling.
I hope all is well with all of you and that you are looking forward to a warm, peaceful, and stress-free holiday season.
Peace, love, turkey and football
Josi

I am so happy that the treatment that you found for the mouth sores helped this time. Good for you!

I’m sure that you and your taste buds will be back in shape for the Holidays. I know that you are looking forward to Thanksgiving and all the good food, as are we all.

You remain in my thoughts and prayers.

how many days til florida? I need to start a huge countdown in my office, and obnoxiously announce how many days to go to all passerby. If I were there, I would be pureeing cranberry sauce for you, as a warmup to thanksgiving… for inspiration. You can do it dude – and you can finally maybe indulge in the “drinking a bowl full of gravy” food fantasy I have…

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November 2, 2007

Round 5Views: 2805

As many of you know I have started round 5 of 6 rounds of chemo. I was admimtted to the hospital on halloween (which is okay as I am a halloween humbug) and will likely be here until monday, is that the 5th? Anyway, this round is Cytarabine and Etoposide. Last time I had this chemo was in August, and as some of you may remember it was a nightmare. I broke out in a rash on the third day of treatment that covered my entire body and lasted a good 10 days. But the worst part of the chemo is that it caused me to have mouth sores. These covered my entire mouth and were even in my throat, making it very painful to swallow. This time I have taken some preventative measures. I had three days of treatment with a drug called Kepivance that is supposed to prevent mouth sores, or at least make them less severe. Of course, I am allergic to Kepivance, and I broke out in a minor rash from having that treatment. But, I figure better a rash than mouth sores. I am hoping not to be in the hospital as long as I was in August, which was a total of about 3 weeks minus the 24 hours I was home where I basically collapsed from having no white blood cells to speak of. In any case, I am starting day 3 of 4 of my treatments today and am in good shape. My nurses have been relatively good, although I am missing Robin, my favorite, who I have not seen yet. My girls came by last night for our Thursday night Grey’s Anatomy viewing party, so that was fun! It really lifted my spirits. My aunt Suzanne is here this week, in ultra task-master mode, getting things done and keeping the doctors and nurses on their toes! Dad will be in town next weekend, and hopefully Joanna the following weekend, so I should be pretty booked up until Thanksgiving.
I hope all of you are doing well, I have been enjoying your emails, packages, CD’s, books, magazines, etc. that many of you have sent. Peace, love, and good health!
Josi

Tomorrow is Alia’s party, we’ll all do a toast for ya! best wishes for a speedy recovery!

Following your progress and routing you on every step of the way. Stay strong. Kelly Shea

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October 24, 2007

Young women with cancer...Views: 3083

I have recently been inspired by Kris Carr, a 31 year old who was diagnosed with an “untreatable” form of cancer, who made a documentary and wrote a book about being diagnosed. She worked with other young cancer survivors on a book of tips called “Crazy Sexy Cancer Tips” that I just started reading. I wanted to share some websites with everyone that I got connected to through the book. When I was first diagnosed I felt very isolated, for many reasons, but one of them was the lack of resources for people my age, especially just having someone who had been through chemo before. So I want to list some links here in the hopes that others of you out there can find some strength in them.

www.crazysexycancer.com
www.therackpack.org
www.planetcancer.org
www.nylifelab.org
www.fertilehope.org
www.cancervixen.com
www.baldisbeautiful.org
www.youngsurvival.org
www.imtooyoungforthis.org
www.livestrong.org
www.theyellowumbrella.org
www.youngcancerspouses.com
www.youngempowered.org
www.cancerandcareers.org

who knew there were so many of us? I sure didn’t…now we all do. hope this helps.

This is also playing on TLC right now. So if you have satelite do a search for crazy, sexy cancer. It is a great documentary and very uplifting. What a great attitude she has.
Great links you supplied.
Donna

I forgot to tell you. Kris Carr also has a blog at http://crazysexycancer.blogspot.com/
Donna

I have seen her show. It was certainly inspirational.

There is one blog spot that I would like to share with you all. Maybe you saw the Ted Koppel documentary that focused on his friend Leroy Sievers’ and Leroy’s battle with cancer. Unfortunately, I missed the documentary but found Leroy’s blog spot.

http://www.npr.org/blogs/mycancer/

Leroy is a professional writer so, when he is well enough, the writing is beautiful. If you go to to the National Public Radio site, which hosts Leroy’s blog, look at the comments that he receives. For more personal communication, he can also be emailed.

Indeed, Kris Carr’s battle for cancer is truly a heart-warming story. She does not only fight for her personal battle against the dreadful disease but she also unconditionally reach out for others who suffer the same way as he does. Hats off for you Kris!

Being an advocate for a fight against cancer, I exhaust the web for resources. Let me share with you a site where provides new hope for cancer treatment even in its advance stages.

Please check this site: http://www.oncolyticsbiotech.com

One may find insight about new trends in cancer treatment.

She is on a book tour now and I was able to catch her one night at a book signing. She is so inspirational.

Hey, good luck tomorrow….

Thinking of you through this next round of treatment and can’t wait to see you for Thanksgiving.

Katie

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October 19, 2007

Be your own advocateViews: 3122

I posted this on the community blog but I thought I would also share it with you, my regular readers here:
I wanted to share a word with you all on being your own health care advocate. When I look around the chemo room at my cancer center, I see people sitting quietly in their chairs, eyes closed, covered up with blankets and trying to shut the world out. I see this even when the nurses are working on them, trying to start IV lines, administering chemo, etc. We all have different reactions to hearing that we have cancer. One of those reactions seems to be to turn over complete trust in your care to your doctor and whichever nurses happen to be on duty that day. I want to throw out my opinion that I think this is VERY dangerous. There have been so many times when I have had to ask the nurses to check things with the doctor, dose levels of chemo, where they have tried to give me the wrong treatment on the wrong day, when they have tried to start an IV line when I already have a PICC line, when they would have sent me home with no platelets showing on my blood test results. I ALWAYS ASK FOR A COPY OF MY LABS. This is a small thing you can do to be your own advocate. But you have to know how to read them. I always ask questions about what the numbers mean, which drug is causing which reaction in my body, and if there is anything I can do at home about it. When you participate in your own care you feel powerful over a disease that so often leaves us feeling powerless. I don’t mean any of this to sound like a bash on nurses or my cancer center. They are doing the best they can with so many patients and always have a smile on their face for me, remembering my name every time. I just feel a responsibility to help them make me better!
Recently I got some great news as a result of being my own advocate. In August I spent 3 weeks in the hospital with terrible mouth sores, doped up on morphine the whole time. It took another 2 weeks at home to recover and I lost more than 20 pounds, mostly muscle. I was doing some online research on how to manage this side effect of Cytarabine that I knew I would have to take again in November. I was on a mission to be healed in time for Thanksgiving turkey! I found some articles on Kepivance (palifermin). They have had good results preventing mouth sores or lessening the severity of them through 3 infusions of the drug before and after high-dose chemo. I asked my doctor about taking it and he said it was a great option for me but that it is normally only given to bone-marrow transplant patients, so he wasn’t sure the insurance company would approve it. Well, I just found out that they approved me to get the drug before and after my next chemo treatment (I know, insurance company does something good for a change!). I am keeping my fingers crossed that the drug works and will keep you all posted, but it has to be better than nothing. I would never have this optimism if it were not for being my own advocate.
So, enough preaching, I hope this has helped some of you. Peace, love, and power to the people! :)

Thx for all the information. Keep upthe good work! feel good. Suew

I agree with you about being your own health care advocate. I agree intellectually but so far have had trouble living up to what I know is an absolute necessity. I have tried to build a relationship with my chemo nurse but there is a new one each time. It’s true that I have had only 3 sessions of chemo but on this last session they took me to a whole other wing full of treatment rooms and other nurses. When I try and discuss my symptoms after chemo they say, very nicely, that it is a side effect and not to worry. They they go deal with the next IV machine that has an alarm going off. I also must admit that I am one of those chemo patients with a blanket and my eyes closed. The blanket is necessary because they kept it frigid in the unit and my eyes are closed because the pretreatment that they give knocks me out. I get more drugs in the pretreatment than I get in the chemo.

I also don’t have the relationship that I would like to have with my oncologist. I know that I am stage 4 but I would like to feel that the doctor is determined to see that I get more than just a little extra time with my family.

The facility at which I am receiving treatment is ranked in the top 10 for cancer treatment in the US.

The other overwhelming problem that I have now is no insurance. I have qualified for a temporary coverage under a special state plan but that expires and I must qualify permanently soon for Medicaid. I may not qualify. I had already been turned down for treatment by doctors that will not accept me since I have no regular insurance coverage. Other health care professionals have told me that they don’t understand how I got any treatment at all. They scare me so much when they say that.

So until I get the financial picture cleared up, I’m going to have to go with what I got. Not happy about it. But for me, another reality I have to deal with in my new universe.

Josi – While I can’t relate to having such a serious need to be my own health advocate – I think that your approach with this is incredible. I imagine it takes a ton of extra mental and physical energy to stay so on top of it all – but keep it up, it sounds like it is paying dividends.

My sister passed this quote on to me a long time ago – not sure if I shared it with you before or not, but seems like the appropriate time:

“In the midst of winter, I found there was, within me, an invincible summer.” Albert Camus

Love you.

I aways ask questions??
You are the one that has the last word.

Sherri

so true! so true! I had no idea how powerful we are in direction of our own treatment which effects our outcome. Take charge as much as you can or if it is too overwhelming have friends look things up for you, double check with your insurance, etc.

one more note. ASK, ASK, ASK and have someone take notes, make a list of questions for your doctor. hope that helps. cheers everyone!

nice post dude. You are a super advocate for anyone, and glad to see this includes yourself. I am so so so glad to see the treatment option for the mouth sores..I know you will be drinking gravy by the bowlful at thanksgiving. Ps, I just issued another Sox challenge.. you should forward it to your dad, aka new member of Red Sox nation.

Josi, that for the validation that your food preferences can change after cancer and chemo. I was feeling positively weird having to tell my husband every time we went grocery shopping—no, don’t buy those sweets. A few times he bought them anyway saying that he wanted them for himself. This is rarely true since he is not a big fan of sweets. Any way, most of what he purchased was thrown out and the money wasted.

I know that I must take control of my health care. But, I also need to be careful for 2 reasons. I have got to get the finances straighted out so that the medical center can’t refuse further treatment and this medical center is really the only show in town or at least the best show in town. It is ranked in the top 10 in the nation.

But, I am thinking long and hard about what you have said. Some of what is going on with me has to be denial of what is happening. After I got home from the mastectomy, while I was terrified, I didn’t begin to look for help and support to deal with what was happening. It’s just in the past few weeks that I have tried to assume control of my life. I’m getting there, I just have to escalate the velocity.

Thanks for your advice and keep it coming.

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October 11, 2007

Culinary delights and other newsViews: 3287

I know it has been a while since I posted, but I have not been feeling like I’ve had much to say. As you know from my last post, I reached the halfway point at the end of September. To celebrate I went down to San Diego for several days to soak up some of that rejuvenation that only the Pacific and close friends can provide. I was able to stay at my aunt and uncle’s beach house in South Mission beach, only a few short steps away from the sea. My first stop upon arriving into town, of course, was El Indio for their famous chips and guacamole and some tamales. With that and some mexican beers I knew I could survive the weekend! It was such a nice relaxing weekend, sleeping late, reading books on the beach and catching up with friends. I got to spend a lot of time with Joanna, finally connected with Lindsay, Jamie, Christian, Brian, Shannon, Melissa, Pauly, and Mario. I was even a good alumnus and made a trip back to campus to see an innocence project speaker. Always good to give your ethics a reality check!
Anyway, I started round 4 of chemo on October 3. Round 4 is a repeat of the drugs I had in June/July, only in a more condensed time frame. As many of you may recall, I was feeling quite well at the beginning of all of this, wondering when the “sickness” was going to start. I have to say I am not feeling quite as well this time through, but am hanging in there. I have a few aches and pains and fatigue, but overall I have been in the same good spirits as always. I have appointments every other day for injections of chemo, so more than anything it just a lot of back and forth. I begin THE BAD ROUND on Halloween, hoping to be on my way to healing by Thanksgiving. More on that as it approaches.
Yesterday was a great food day for me! It started with one of my favorites, everything bagel lightly toasted please with plain schmear from Noah’s (not quite on par with Bruegger’s garden veggie cream cheese on an everything bagel, but a close second). Then I had lunch with Shelly, a friend from work, at a thai place I have been wanting to check out. I had kaffir lime and coconut milk soup with chicken, fresh cilantro and mushrooms…it was the perfect thing for a light lunch since I was anticipating a FABULOUS dinner. Here’s the kicker…
Anne and I went to The Kitchen for dinner. This is a restaurant owned by Executive Chef Randall Selland and his wife, who also own Selland’s market (like Damico’s for you Minnesotans) and a new restaurant called Ella. Going to The Kitchen is sorta like going to the chef’s house for a huge dinner party. They only have one seating per night and they only seat 50 guests. There is a huge counter where about 15-20 guests can sit and face the kitchen almost like on Emeril or at a cooking class. There are 4-5 tables that seat about 6-8 guests around the perimeter of the room, and there is a wine cellar in the back corner. Behind the tables is a lovely patio with a fireplace and benches shaded by flowering trees. A fountain drowns out the noise of Howe Avenue and the Taco Bell drive thru that is next door! Chef Noah Zonca began the night with a rowdy hello and a detailed explanation of the different components of the night’s meal. The menu is fixed and prepared with all the freshest, seasonal, organic and humanely raised ingredients you would expect here in cow town. He displayed for us huge bowls of chanterelle mushrooms, lemon grass, bamboo rice, tight rope mussels and even brought out some of the largest live Maine lobsters I have ever seen in my life. They have a great wine list there and had prepared a flight to accompany the meal for those of us who can’t make decisions when it comes to that kind of thing.
For the second time yesterday I had Kaffir lime and coconut milk soup. However, this time it came with chunks of Maine lobster that were served over a rice cake made of bamboo rice risotto with lobster stock and as if that weren’t enough there were tight rope mussels steamed right in front of us at the counter and laid into the broth. AND some soft shell crab legs kicking off the top. Heaven. I think that was my favorite dish of the night….well, maybe it was the tenderloin…ugh decisions.
Then came a salad, which I thought was okay. I admire the fact that it was laid upon duck prosciutto which the chef had cured himself over the last several weeks. There was also this incredible mushroom that looked like something you’d find on the ocean floor, lots of tentacles, it was golden colored and they had marinated it in olive oil, sherry, shallots, garlic, etc. Out of this world!
Then came the sushi course…yes, an entire course was dedicated to sushi and prepared by the only sushi chef to have come out of Jalisco, Mexico (so we’re told). There were oysters, tuna, hamachi, california rolls, the best vegetable tempura I have ever had, soft shell crab, Massachusetts diver scallops, all laid out on gorgeous platters. The wine steward was offering two different types of Sake with the sushi course, but there was no way I could hang with that! The sushi course was served out on the patio and everyone mingled like at a dinner party. The atmosphere is great, and the chef invites you to explore the whole place. So of course I had to get back into the kitchen to see what everyone was up to. It is surprisingly calm, and clean. Nothing like the kitchens of my long restaurant past!
On with the meal! The third plate was Canadian Wild Salmon and Vietnamese jumbo tiger prawns served over a cabbage confit (with duck broth for those who cook) and topped with an arugula-pine nut pesto. The fish was so tender, and I guess this time of year has the highest fat content that it will have in its life. Bonus!
The fourth plate was right up there with the soup, contending to be my favorite of the night. You should have seen the tray of been tenderloins that was sitting on the counter. There must have been at least $500 worth of meat sitting there, all medium rare and whispering my name! They were grilled on a mesquite grill with a bunch of lavendar thrown on top of the fire to add the scent. The tenderloin was served over butter poached black truffle pasta (handmade in-house fresh), golden chanterelle mushrooms, and a reverse hollandaise of warmed egg yolk and cabernet-parmesean broth. Need I say more?
Yes, there was dessert! Brioche french toast and apple consomme with pink lady apple fries, real vanilla and cinnamon ice cream and maple sabayon. A big hug from the chef on the way out topped off the night, and I have to say it was one of the best dinners I’ve ever had. It was great to share it with Anne who is an exceptional cook in her own right, and can appreciate all the preparations and ingredients we experienced, and is overall a very appreciative eater, like me.
Jo, Mark, Lauren, Jen, Donny, we all must go again! You would all love it!
Anyway, I wanted to give you all a little taste, since I haven’t written about food in a while. I haven’t been doing much cooking, but perhaps I am regaining my inspiration. Stay tuned for further updates!
Peace, love, and indulgence!
Josi

That dinner sounds amazing. Looking that place up next time I make it to Cali. Love!

One word: yummy!

Thinking of you, wishing you well.
Bernard

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September 24, 2007

We're halfway there...Views: 3798

In the immortal words of Jon Bon Jovi (shoutout to Mara and Graig in Jersey), “whoa we’re halfway there!” I am officially halfway done with my chemo treatments and will start with round 1 again on October 3rd. With some slight modifications, I will start the same chemo drugs that I had in June/July, only this time I don’t have to be admitted to the hospital. I start with 3 days of Daunorubicin and will have the first of 3 (not 4) Vincristine treatments (the one that makes my fingers numb). I will also be on prednisone pills during the whole month and probably continuing into November. This is the drug that stopped my rash in August so I think the plan is to just keep taking it to try to prevent the rash this time. I will also have the Asparaginase shots (an enzyme treatment) but will only have half the injections I had before. So I will have 6 shots over 2 weeks, which basically means every other day for 2 weeks. The plan is to be finished with this round on October 19th, take a break for a week and then start November’s drugs early so that hopefully I will be well by Thanksgiving. I’m gettin’ me some turkey, mouth sores be damned!
I am really enjoying my month of feeling well! My brother was here 2 weeks ago for a night and a day. We had a really nice walk along the river beginning at Discovery Park. It was just as the sun was setting so we made sure to watch out for the “pervs”! Just as he was leaving Joanna came in for the weekend. It was great to see her and just chill out. We were pretty low-key, watched football and baseball, went to Mulvaney’s for a fabulous meal AND she cooked for me, which was great. It seemed like old times, like when we lived together, minus the studying hanging over our heads. I think I am starting to win her over in my efforts to get her to move here! Although I can’t imagine anyone wanting to leave beautiful San Diego.
My dad and Louise were here this weekend. Dad came in early on Friday and we had a mellow day, reading magazines and taking naps. I cooked him dinner, stuffed chicken breasts with mushrooms and parsley in puff pastry, one of my standards from the Jamie Oliver cookbook. It felt good to be cooking again and for a very appreciative audience! Louise came in late Friday. I haven’t seen her since my diagnosis, so I think it was good for her to see that her big sister is not dying and that I’m still myself. I took her driving at Cal Expo in a big empty parking lot to teach her to drive a stick. She actually got the hang of it pretty easily, not like me when I was 16. There was no yelling or crying or cursing! Then we went shopping, of course, the best thing to do with your lil’ sis when its raining! We had dinner at Tapa the World, and of course she knew exactly what to order, having spent half the summer in Spain. What a charmed life she leads! She had to go very early on Sunday so it was a short trip, but dad stayed until Monday. We watched football all day Sunday and had dinner with mom. It was a nice weekend.
Since I have been feeling so well this month, and I will have a repeat of this chemo in December I have been planning trips left and right! Sadly, I had to cancel my ticket to Nicaragua for Christmas, but I booked a ticket to Minneapolis for the holidays. I am excited to hopefully have a white Christmas and I am really looking forward to seeing family including my aunts, uncles, and cousins. This will be our first Christmas since my Grandmother passed away and I know she will be sorely missed, but we will also have a new baby in the family; my cousin Jenn is due at the beginning of October. I hope they will be coming home for the holiday. I am also planning a trip to Key West in January to celebrate the end of my chemo. My aunt Kathy and uncle Jim have generously offered me the use of their place down there, so it should be a fabulous trip! I am hoping to get right back to work after I get back from Key West. It seems like forever since I have done anything productive and it’s driving me nuts. I know it sounds crazy to most people, but I love my job and I miss it. I can’t wait to get back.
Well, that is the whole update I think. I have a little trip to the beach planned for this weekend that I am looking forward to. Something about the water feeds the soul; what better way to get geared up for the second half of this battle.
Peace, love, and soul nourishment to you all,
Josi

I had a bunch to say then i got distracted by the news of your key west trip. I LOVE key west. i’ve spent a lot of time there and keep going back. You’ll have so much fun!

Hope to see you tomorrow night…I’ll call you when I land!

E

Just a GREAT BIG HUG!

Sherri

It is good to read your update. You sound in good spirits. I am really proud of you. Key West sounds lovely…

can’t wait for you to get your butt down here. Woo woo! In furtherance of my ongoing and seemingly successful effort to strongarm you into becoming a part of Red Sox Nation may have to drag you to a bar to watch the red sox – we have 6 games to go (including the one currently going on NOW and tied at 1-1) and only two games up over you know who.

silly rabbit…since when have you ever had to DRAG me to a bar…

LOVED the Bon Jovi shout out. Don’t know why but I’ve equated most things in life with running the infamous mile in gym class – looks like you have two laps to go honey!

So, one of my new supervisors at work reminds me soooo much of you (she looks nothing like you) but she just has so many mannerisms that make me think of you. Any time I can be around her its like I’m standing next to you too. Its one of my special telepathic ways I have quality time with you during my days.

And what’s this baseball smack talk I detect from Joanna?!

Keep rockin’ woman – take no prisoners.

Oh – almost forgot. When you are at the beach…make sure you hit the water in your jeans and think of our special night. Those moments are ones I will never forget and think of often.

Hey, Girl. Happy you had some time with your brother, dad and little sis. Hugs and kisses to all of you from me. And, you are looking forward to a few nice trips, tho I must say if I had a choice it would be definitely more time in Key West than in Minnesota! I had some raspberries recently and remembered the time you and I made a pie in your dad’s little apartment in Bennington. Wow…how long ago was that????
Much love, Josi.

Pauline

Wow, Pauline, I can’t believe you remember that! I vividly remember that and I couldn’t have been more than 7 years old! That was a great place, even though it was small. Good times. What I remember is watching the Cowboys on Sunday morning and you made these baked clam things that were so good. I have been wanting that recipe for years. Hope all is well with you and your kids too!

mara, I wore the jeans, but we did not go in the water.. in the triumphant return to mission beach at the end of deal court. I am waiting for you.. because without you with us, it wouldn’t feel right..

amen to that. thinking of you…

Everyone (here and at the Public Defender’s Office) has been asking about you! We all miss you! You look good and I can only imagine how good Jo’s nummy food was. Glad you got to see the family and you are in my prayers girl.

Hey Josi,
So the big hike is only 3 days away! Can you believe how quickly time has passed and that it is already the middle of Oct! I hope that you are doing well and I will be thinking of you all weekend. I will sending out photos from the hike and the Grand Canyon as soon as I get back. Take care!
Love,
Alia

Good luck and have a great time on your hike, Alia! I’ll be rooting for you. The Leukemia Lymphoma Society is lucky to have such a dedicated fundraiser in you.
Much love

Hey girl! Hope things are going well. I was checking in on your blog and just wanted to say that I was thinking of you. Michael and I are doing the American Cancer Society walk this weekend- I raised a bunch of money so we can kick this things ass! Keep rockin it out girlie!

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Josigirl13's Stats

Posts: 33
Photos: 12
Events: 0
My Supporters: 25
I Support: 9
Comments: 292
Views: 81742



My Supporters:

 angel & ben

 Carol

 Evy & Hunter

 Sue

 Patty Morris-Hildebrand

 Jill
You look great Josi!

  Kara Marti

 Sherri

 "Kay Kay"

 rayoflights7

 Mac

 Donna Richno

 Lily

 sue

 tabby6680

 tahansi

 yools

 Sara 

 Lan 
In memory of Nancy and Donald Watson

 Kasia 

 Lauren Curley 
Hey Josi! You are awesome! Get well soon!

 kivles 
I'm going to dig up some funny malta pics and send them you're way. Thinking of you!!

 Jessica Williams 
Josi- I've just been given this blog information. Your blogs are so inspiration and really shed a great perspective on life. Thank you so much!

 Kelly Shea-Bradley 
I'm Pauline Shea's daughter. Mom called your dad - prompted by the terrible bridge collapse and found out about your cancer. Want you to know you are in our