May 2010 Chemo

LOL!  Kim you always make me laugh!  Donkey Depression?  Is is the type that makes you feel like ass? Now I can't stop laughing

Day, your garden looks awesome - I get the "making up for last year" thing.

Daiva - so glad you are home and feeling better!

So...I ended up going to see my surgeon on Tuesday (which was planned) and finished the day getting all sorts of tests as he figured I had a pulmonary embolism on March 12th.  Lucky though there is no evidence of it on the VQ scans or the chest xray now, but I talked to him today and he still figures that is what is was, so I guess I'm just one of the lucky ones.  Freaky thing is that a) I called the cancer centre with my symptoms and talked to the triage nurse who at NO time seemed worried enough to send me to the ER, and b) I started taking asprin the next day for pain so may have in fact helped treat myself.  Pretty much feel like I dodged a bullet.  I talked to a good friend of mine on Wednesday night and told her how I was fine until I looked up pulmonary embolism online.  1 in 3 don't make it.  I had a good cry when I picked up my son Wednesday after school, but am just trying to forget it.  The surgeon is also sending me for a bone scan just to make sure that the rib pain isn't caused by anything more sinister.  In the meantime, I'm throwing myself into work, drama, and being a mom and wife and staying focused on how lucky I am to be alive.

Night,

Jenn 

Hello my Friends::::  I am also guility on not being on boards much.

wow Jenn:  so so scary...I am glad to hear you are doing well.. Maybe better you didn't know the odds prior to being better...omg I can't believe it as I was reading it...Still in shock.

Daiva: I know that you are goihg thru some bad pain. My sis had DIEP and I walked with her around the halls. I seen the pain in her face. But you are right, it is all for a good cause.

Day: your garden looks great. For me I have black thumb.. the only thing i can grow correctly is weedS.

So I have just been released from the hospital. I had my left hip replaced last friday.  I could not take the pain anymore. My xrays showed bone on bone. Funny one year prior  I only had 20% arthritis in the hip. I totally blame taxol.. Son now I am 3 for 3 for surgeries in the spring,

March 25th 2009 - right hip replacement ( no signs of problem at all in left hip)  lost my husband april 22nd same year

April 6 2010- bilateral

April 1 2011-left hip replacement

I am going to keep my head under the covers next year from end of march until end of April. Also having lots of problems with my toes and ball of foot. Podiatrist says neuropathy.. I did not know neuropathy caused that much pain...Does anyone know anything about that?

On good side, I was at most fantastic hospital ever. I never wanted to come home. I rang the buzzer and they were there in 3 seconds...no kidding. I got help to the bathroom and when I came out sheets were changed and pillows fluffed.. PT, OT and nursing staff amazing. If anyone has any joint problems at all I hightly recommend hospital for special surgery in nyc. It is actually down the street from SLoane and next to NY presbyterian.

Okay so now I am home again for a month, Trying to make sooner as I cannot afford to be out of work..And that is my speel for the day

enjoy the week ladies

OMG I have sweat in my right arm pit!  I was shocked to see it yesterday! Lifted my arm to reach for for a glass and my husband said look your sweating!  and I was so happy to see it!  I was wondering if it would ever come back.  I know this is going to sound funny but I had to put deodorant on today!   I have not had to since my MX. ok only on the right side. but hey that means the glands are working under there right ..so may be the right arm wont swell as much as the left?  I am hoping! 

Made my day!

LOL!  Denise!  Congrats on sweating - ah the things we see as the signs of returning to "normal." Oh, and don't sweat the colonoscopy!  I've had quite a few - comes with having Crohn's disease.  The stuff they give you will probably knock you out.  Most of the people that have been in the recovery room with me seem to be snorers   Make sure to have lots of TP in stock for the prep and don't plan on doing anything for a day or two after that requires being around people you wouldn't feel comfortable being pretty windy around  They pump you up with air and there is only one way out!

Met with my onc today...he figures that I didn't have a pulmonary embolism based on the results of my echo that he just got back YEAH YEAH YEAH!  I'm so relieved.  One of the other women that I met on here and talk to quite often lives in Ont. Canada and she DID have a pulmonary embolism - she's the same age, had the same type cancer and same treatment, and discovered the pulmonary embolism on Friday.

So that leaves me knowing no more about what is going on!  My onc is leaning towards a brewing infection wrecking havoc in my bones(pain), lungs (hence the cough), skin (massive blisters that we thought were from a reaction to silicone dressings), abscess site (red, sore, and still being packed) etc.  He mentioned bone mets, but mostly as it being something that causes pain, but didn't seem overly concerned.  His nurse freaked me out more when she said that sometimes  the liver can cause referred pain in the shoulder. ARGH!  Onc ordered a CT scan of my chest and upper abdomen and a bone scan too, so hopefully I'll have answers soon.

On a positive note, it was about 16 celcieus here  yesterday and it felt SO GOOD to have that warm sun on my face AND I got out of raking all the puppy poo in the backyard

Sorry for the long post - I'm hiding from a little boy who thinks I'd rather be giving him a bath instead of letting his dad do it! Have a wonderful night ~ Jenn 

Jenn~ thinking of you today and hoping things settle down for you!  Hurray for spring!

Denise ~ happy sweating :-)  Snow peas, carrots, lettuce - you go girl!

I'm on the mend from bilat. diep 3/30 and feeling pretty good.  I run out of steam easily but am moving around better each day and am glad not to be taking the Percocet anymore.  Loving the flat tummy!!!! 

Supposed to start Femara tonight - think I'll wait til the weekend.  Anyone else on it?

sacphotomom - I am so sorry about your cousins! I can't even imagine what you're going through. I only can give you many, many virtual hugs.

I'm waiting for the results of many tests my onc has ordered on my visit on Monday. vit D, FSH, blood sugar, estradiol, I even forgot all of them. I had complained about all the little pains and discomforts I had, and he wants to check all aspects that might give these symptoms before establishing that it's just extended chemo side effects. The other thing is that I have a pain about where my kidney would be, but it feels like it's right under the skin, at the end of my LD incision. He said he can feel a little bit of swelling, and he suspects I bruised or even cracked (hairline fissure) a rib - I think it might be scar tissue that I have ripped with all my garden work. But he wants to keep an eye on it and if it doesnt' go away or if it gets owrse I go back to scans.

Anyway, I found two wonderful sites that help me with my weight loss plan.

On this first one, you can calculate your daily meals:

http://hp2010.nhlbihin.net/menuplanner/menu.cgi 

 And on this second one, you can calculate how many calories you burn on various things (from house cleaning to cooking, it's really neat)

http://www.healthyweightforum.org/eng/calorie-calculator.asp 

Try it and see, it's really neat and for me it's a great help!

Hey Jersey, I don't know if it would help with your neuropathy, but while I was on chemo I was taking Acetyl-L-Carnitine (an OTC supplement).  The reason I was taking it was because my onc wanted to see if I would participate in a clinical trial for it to see if it reduced neuropathy in chemo patients.  I decided not to do the trial and just take it on my own.  It is a product that is often touted as helping senior citizens with mental acuity.  I didn't have any neuropathy and didn't really experience chemo-brain either.  You might want to check it out.

Jen

day: I am TN on left side but my right side was ER+/PR+. Acutally right side was multifocal so it could be said I had 3 different types of cancer.   I could never figure out how to put that in my profile. I am not to computer savy..

Yes Daiva I did tell my onc.  I was really not pushed to take it. I told my original onc. and I even told the new one that I just went to and neither one of them were aghast that I refused to do it.

Packjen:  thanks for the information, I am going to check into that. I have decided once my hip heals and I can walk again I am going to a nutritionist and start seeing what would be best for me with regards to my feet.  Maybe he can help with the lymphedema too...The last wonderful thing chemo gave me was cataracts..oh YEAH.  although I heard it is a minor operation and you are only out for around a week.

Lets talk about HAIR...I feel like mine looks like bozo. I don';t want to complain because I least I have some but what are you guys doing to control it. Mine seems frizzy at times and just unruly. I cannot style it because it really is too short and I am finally going to give my wig up on May 1st when I go back to work...Any hints at all would be greatley appreciated

Day:  thanks...there is a Sally's right around the corner for me.. I will check it out. thanks for the tip...Have you gotten a trim since it has grown back? I have not.. Most people tell me  I should but the thought of a scissor to my head makes me shake and tears fall from my eyes.. I have hard time doing it...

 re: drugs.. I have so darn many side effects that I am resigned to calling it quits forever...I don't want to try another blessed thing.. I AM SO DONE.... I often wonder if I should of never taken the chemo in the first place...No one can tell you for certain  that one little cell escaped your nodes and went into your body...nO ONE.....guess I would feel different if I didn't have so many residual everlasting side effects..

Hey Jersey - that stinks about all the side effects - I get it.  I still feel like crap - can't stop coughing, and still have rib pain.  The good thing is that my lungs came back clear of blood clots - and my heart is okay - so now it's tests for my bones and a general CT scan to see if there is something else going on (like my liver causing refered pain in my shoulder.)  I'm just FED UP.  I felt better during radiation than I do now - blah.  

Anyway about the hair thing - it's probably best to get a bit of a trim.  I understand the want to keep scissors at bay, but it might make it seem a bit longer to get rid of the "fuzz" that will be at the end of it (in my case it was also grey fuzz so it really had to go.)  I noticed a big difference in how easy my was to manage after a trim.  However, my hair grows extemely fast so maybe that was why I've got it cut so much (I'm going for #4 next week.)  As far as product, I use a diffuser to blow dry my hair to enhance the chemo curls into a nicer curl, and use a Paul Mitchell product called "Round Trip" before I dry it, and another one called "Wax Works" after to hold it in place.  I'm getting more compliments on my hair now than ever so I must be doing something right!  However I do resemble Christopher Walken by morning, so this does require a bit every day to up keep.  I only wash it every third day to so that it helps tame the frizz.  Just a quick rinse with water/apple cider vinegar seems to do the trick.

For those of you taking Femara, what is it for?

Day:  went to sally's ...had to get magic grey..my hair too too grey to get a rinse. the lady at Sally's said a waste of my money to buy the rinse..So now I am a lighter blonde but grey gone. It is still frizzy at top of hair. My neighbor goes to a salon where the proprietor had cancer. She told me to come in and she would help me with my hair and coloring and products.

Think I will make an appointment as this woman obviously has been through the whole hair thing. She did tell my neighbor that when your hair comes in it still has the chemo in it and that it does have to be trimmed (BOO-HOO). I will have to be doing shots of vodka when she puts the scissors to my hair.  My ultimate goal is to look halfway decent in August when I go with my friends to Jamaica...

So what is everyone up to for Easter or Passover?

Popping in to say that if any of you haven't read the "Promise Me" by Susan B. Komen's sister -- I am almost through with it and it is EXCELLENT!  She is a good story teller and it isn't all about drama and/or financial status of the company.  It has some rough spots to be sure -- but we warriors can handle it. 

LibraryJenn:  You take good care of yourself and nurture your body as much as possible -- hard to say what all is going on -- prayerfully, it will ease on up and not be any lingering health concerns for you. 

PackJen:  WOW!  Losing weight and feeling great -- I need some of that!  I have put on about 10 lbs. AFTER treatment finished and started Arimidex.  SOOO, I need to get jumpstarted myself.

I am with DAY on not wanting any hair cut.  I wash mine with an Olive Oil Shampoo or baby Shampoo and let it air dry since that seems to be what was recommended for up to 6 months after chemo -- (not drying it or dying it).  It has curls here and there and some flat areas but I try to just go with the "flow" for now.  GLAD TO HAVE HAIR! 

 Hey, please hang in there about the image of whether chemo was necessary.  If you read the book "PROMISE ME" -- Susan B. Komen didn't go that route the first time she was diagnosed -- sorta just did what was necessary and didn't go the "extreme" (especially back then) but it hurt my heart when I was reading that because I just wonder if SHE might have survived and it wouldn't have come back so dramatically only 6 months later.  Honestly, life is precious and those who love us would take us -- hairless -- having aches and pains and "no so good days" -- so HANG TIGHT my friend.  I have a co-worker who totally totally thinks she should not have had chemo and she refuses to even discuss stuff with others -- she wants to pretend it didn't happen to her -- PRIMARILY because of her hair loss - -it seems to have kicked her to the bottom of the rung.  THEN we stop and hear of the true warriors -- those of you who had chemo / radiation and surgery and reconstruction -- the whole A-Z of handling this disease and I am SO INSPIRED by your courage and walk.    HUGS!

Jersey - ditto!  I agree with what you say  How is the hip doing?

Jen - Way to go on the weight loss!  I bet that feels awesome!  I'm back down to what I was pre-cancer too, but would like to be down another 30 as well.  I'm not able to exercise until I get this cough under control, but my goal is to ROCK a bathing suit by next summer, prothesis or no  

It will be a year ago on Monday that I found the lump -  what a roller coaster.  Met some great people, cried more tears than I thought I had in me, laughed more than I thought I would, and got to know myself a whole lot better.  I have changed, (wouldn't say it's for the better or worse for having had this) and definitely appreciate the relationships I have with others over the material goods I've accumulated.  Now I know how to "not sweat the small stuff" and to live in the moment.  Yesterday I had the option to do housework or to make crafts with Connor - I chose the crafts.  We coloured/stamped/stickered enough paper to COVER the fridge door.  Might have missed out on that had I not had this experience.

Anyway, Happy Easter/Holidays/Passover to all!

Jenn