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Who is starting chemo in September 2016?

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  • CC2016
    CC2016 Member Posts: 94

    Leydi- I'll be right behind you on the same treatment plan. Maybe 2 weeks behind, hopefully, if I stop getting delayed on everything to get me there. I'm actually relieved that you feel okay by now. I'm planning a birthday party for my daughter the weekend after my first dose. Hopefully.

    Maybe your MO could help arrange a assigned nurse for you? I'm scheduled for a class that has already been pushed once, now it's after my port placement. After reading much here it sounds like the clanot much more than what you can get here. I'm hoping that the port goes well so I don't have to push into the following week. From reading here it sounds more than what I was lead to believe.

  • LisbethS
    LisbethS Member Posts: 88

    I was at the wig store last week and they warned me to not shave or even use buzz cutters on my hair, they said to get it scissored cut real short. They said it will lay better and feel better. Has anyone else been told that? They don't have a license to cut hair so it wasn't like they had any vested interest for saying that. They do a lot of wigs for chemo hair.

  • LisbethS
    LisbethS Member Posts: 88

    CC2016 - I thought the port placement was going to be no big deal and then the nurse called to give me instructions the night before and told me it feels like getting punched in the chest and the sort of pain that Tylenol or Ibuprofen could NOT handle, so I searched for it on here and read all the horror stories. By the morning of the port placement I was a basket case but then it ended up being no big deal for me. I'm sure everyone is different. I also noticed a lot of the horror stories were from 2011 and earlier so maybe it's improved. I got mine put in at the hospital by a PA that does them all day long and lost count after his 1000 placement. He said sometimes surgeons like to sew them to the muscle, which can have a little more discomfort, but he doesn't do it like that. Those poor guys had to talk me down from the ledge. They were awesome.

  • CC2016
    CC2016 Member Posts: 94

    lisbeth- thanks for the info. I was planning to have it done with my surgeon but she had to push the date another week and I wasn't willing to do. (It would have been the third time I would have to wait on her all summer!) I was looking forward to a little lesson that she gives the day before about what you was going to happen, the other guy doesn't so I'll show up and be told. Meanwhile I'm getting the same preop procedures as my breast surgery!

  • Ware
    Ware Member Posts: 63

    I don't know what the mouthwash is. It is a prescription called chemo mouthwash. Ha! It numbs my mouth.

  • smilethrupain
    smilethrupain Member Posts: 133

    Biotene rinse/mouthwash

  • smilethrupain
    smilethrupain Member Posts: 133

    Lisbeth, I'm going to be on TC as well. How was your first experience ? I was thinking of asking to do it in Thursday and taking Friday off. My boss is very understanding. Why are you doing a port? How many cycles will you have? Mine will be 4x. I read on a different thread that taking Claritin the day before and the day of helps with Neulasta bone pain. My friend who is an oncologist in Europe, says they don't give Neulasta unless WBC count drops (because of the drug's side effects)..

  • Leydi
    Leydi Member Posts: 53

    My first post on this thread was very complainypants. Sorry about that. Let's see what I can offer that may be helpful.

    Day 1 - First AC chemotherapy treatment

    I have a chemo-port that was installed during my BMX. We knew going in that I had cancer in the nodes so chemo was not optional. I did not have the numbing cream and they did not offer to numb the area. If you are fine with normal blood draws and injections, you will be fine with a port stick. It only stung when first inserted and then I didn't feel anything at the port site for the duration. The needle was taped in place to be sure it didn't shift as I moved around. First infusion was the pre-meds. This cocktail can vary a bit depending on your MO and any specific conditions you may have. My mix included Emend (to prevent nausea), Palonosetron HCl (to prevent nausea), dexamethasone (steroid to prevent allergic reactions), and sodium chloride (hydration/electrolytes). I had asked for a reduced dose of the steroid because I have Type 2 diabetes that is well controlled with diet only. Steroids can play havoc with your blood glucose levels and is especially tricky for diabetics. My MO agreed to reduce my dose by 1/3 the first treatment to see how I did. I did start to feel slightly weird as the pre-meds started infusing, like it was hard to get a deep breath, but before I could flag down a nurse, the feeling went away. After that, I felt nothing with the remaining drugs. Once the pre-meds were finished (maybe 10-15 minutes), a nurse came by with a jumbo syringe of doxorubicin (A) which is a deep red. I began sucking on ice as she slowly injected this into my IV line by hand. The ice is supposed to slow the blood flow to your mouth with the thought of having less of the chemo drug circulate there to help prevent mouth sores. Every once in a while, she stopped pushing the drug and pulled back on the syringe a bit to make sure she was still getting blood. She explained that this drug is very toxic to regular body tissue and it was critical to be sure it was going directly into a vein and not spilling into the tissue. The administration of doxorubicin took maybe 10 minutes. As soon as that was finished, they hooked up a bag of cyclophosphamide (C) which then infused over about an hour timeframe. The nurse said that I didn't need to continue to eat ice during C but I did for the first 30 minutes anyway just to be sure. By then, it was lunchtime and I was hungry so I ate the snacks that I brought and sipped on a Poweraid Zero. Once I was done with C, a nurse came by with a Neulasta pack. I asked to have it placed on my stomach so she took me to a private room to put it on. She put it on (painless) and then covered it with a clear bandage. After several minutes, it activated to stick me and she explained that it would insert the tiny tube at that time but not inject the drug until 27 hours later. The pack should continue flashing green until that time. The drug injects over about 45 minutes, at which point the pack will have a solid green light. If, at any time, the pack has a red light, I was to call and come in to receive a Neulasta injection instead. The pack also beeped whenever it was about to do something so the stick and drug injection does not take you by surprise.

    My first bathroom visit before I left the clinic included the red urine I was warned about. I went straight home and felt normal the rest of that day except for a sore throat and dry mouth. I also had a headache but that started before chemo so I can't blame chemo for that.

  • Leydi
    Leydi Member Posts: 53

    Day 2 to Day 4 - After first chemotherapy with AC

    I'm lumping these days together because they have all been very similar. I did go to work on Day 2 and managed the full day but went to bed at 8 pm and slept for 10 hours. On Day 3, I made it to 9 pm and again slept for 10 hours. I have had mild nausea, lack of appetite, and thirst/dry mouth on each of these days. I'm drinking as much as I can but too many fluids at a time increases the nausea. Poweraid Zero, which I normally like pretty well, is difficult to drink. Strangely, water is going down much easier, as is iced coffee. Both water and coffee are commonly brought up as what folks can NOT tolerate on chemo. It took me until Day 3 to realize that even though I didn't feel like eating, I felt much better right after I did eat. So, I started forcing myself to eat a little something every 2 to 2.5 hours. It was still tough to eat because I would start to feel nausea shortly before it was time to eat again. Today, Day 4, I strove to eat every 1.5 to 2 hours and have felt much better. Note that I am not eating MUCH each time I eat. I don't want folks to think I'm eating 12 meals a day. ha! So, I'll eat a piece of low-carb toast and 1.5 hours later 1 egg, etc.

    I was given Zofran and Phenergan scripts to control nausea and advised to start the Zofran the morning of Day 2 and take regularly before feeling sick. The IV meds were supposed to hold me over for that first day. So, I'm taking the Zofran 3 times a day, roughly 8 hours apart. Don't know if it is helping; I may be much worse without it. I haven't felt sick enough to add the Phenergan, which I was warned will make me very drowsy. I don't want to be in bed all day. Zofran does seem to be causing constipation so I'm taking a stool softener. Hope that's enough but have Miralax on stand-by.

    On MO advice, also taking Clariten each day to help with Neulasta induced bone pain. Started this a couple days before Day 1 and he advised that I just take it all the way through chemo. I notice that many folks just take it for a few days around treatment day. I also take one ibuprofin each time I take Zofran, so 3 times a day, again to help with Neulasta pain. Don't know if these have helped or if I wouldn't have had pain anyway but no pain as of yet.

    Also on MO advice, I'm rinsing several times a day with salt/baking soda in water. I made up a few bottles and have one in each bathroom. Every time I use the bathroom, I rinse and gargle with the solution. This is supposed to help prevent and treat mouth sores. I have no mouth/throat irritation after a sore throat on Day 1.

    Other supplements include Vit D3, calcium citrate, and probiotics.


  • LisbethS
    LisbethS Member Posts: 88

    Smilethrupain, What I've heard about Neulasta is that there are new protocols that insurance follows and only approve it if a person is already unhealthy. Otherwise they only approve it if a person is on chemo and then their WBC drop. Something like that. I guess I was unhealthy enough that my insurance covered it. I'm 51. Idk which of my issues got it covered. I am also on the August 2016 group because I was supposed to start in August and they had a lot of conversations about Neulasta and insurance, I think they formed a new group to discuss it, so you might want to look for it. There were some school teachers (around germs all day) that wanted to work and needed it and their doctor's tried to get it covered and couldn't. Very sad.

    Ugh, I never should have taken Zofran. I little bit of nausea and I panicked and took ONE and only one and now my insides are cement. And I want this chemo out of me. I have had benefiber, miralax, a zillion stool softeners, SenokotS, gallons of water, and what did I get? Something between the size of a pea and a marble. Ugh. So I used a suppository, it helped. Sorry, about the TMI. I would have rather puked.

    The aches are starting tonight (day 3) but I think it is because I was not in good health to begin with. I've been fine Day 1-3, only tonight is it starting. Could also be because I had two nights of one hour of sleep and then last night I got only 3 hours because of the STUPID Dexamethasone. Off it now so hoping for some sleep tonight.

    The PA also said a bath with epsom salts can help. Not sure if that was for neuropathy or bone pain but I'm off to try one now. And hoping for some sleep.

    I read that you shouldn't think of the chemo as poison or toxic so I decided to picture it as PacMan running through my veins and the dots are the cancer. That's my visual.

    It's so nice to have you all to talk to.

  • ACS74
    ACS74 Member Posts: 62

    Lisbeth- I love your Pacman visual!

    I've read somewhere about cold compresses to cut down on neuropathy and sucking on ice chips. Can anyone here shed some light on this for me? I want to be as prepared as I can for Wednesday.

    Re:Hair- I've decided to lose it on my own terms and will be chopping my hair (which is half way down my back) off in the next few days. I have cried repeatedly thinking about it, but I think it will be less traumatic this way.

  • LisbethS
    LisbethS Member Posts: 88

    I have read that icing your hands and feet during the Taxotere part of the infusion can help reduce your chances of getting neuropathy. I don't think there are any hard studies that prove it. Taxotere has the risk of permanent neuropathy. Also heard icing can reduce the chance of loosing finger and toe nails although my PA said she's never had anyone lose a nail on my particular chemo blend (CT), just discoloration. I already have some neuropathy so I'm more at risk, so I am icing my feet and hands. My PA wasn't sure that it helps, but lots of people say it helped them so I'm going for it. The cold keeps the taxotere from circulating to those parts so there is some talk that you want the taxotere going everywhere and cold would inhibit that, so keep that in mind.

    So the nurse brings me 4 bags of ice chips 15 minutes before the Taxotere begins. I bought oven mitts (a great suggesting from the August group) and ace bandages. I put the smaller bags of ice in my oven mitts to keep the ice on my hands and it keeps the ice from melting as fast. I wrap the bags of ice on my feet with the ace bandages then I can recline and not worry about the ice falling off. I start icing 15 minutes before the Taxotere infusion and go until 15 minutes after Taxotere. I pull them off for a bit every 20 minutes so as to not get frost bite. They bring me new warm blankets to keep me from getting too cold.

    I also suck on ice chips during Taxotere to keep from getting mouth sores. Same principal, the cold keeps the Taxotere from circulating through the mouth tissue which are susceptible to Taxotere since Taxotere attacks rapidly reproducing cells and mouth cells are rapidly reproducing cells (like cancer) I don't know if it is going to work, but I'm trying it. So far no mouth sores. Knock on wood.

    Oh, and my PA did suggest I take Alpho-Lipoic Acid and B6 to help prevent neuropathy, but not on the day of the chemo. I've also read Glutamine, but haven't asked my PA yet if that is ok.

    Achy today. Yuk.



  • 70charger
    70charger Member Posts: 591

    Lisbeth ( & other Ladies) the cold from the ice restricts the blood flow so you don't get as much of the drugs going there. I also did T/C. I did get mouth sores after my 1st infusion, but they adjusted my drugs & had no prob after that. I did not ice my hands or feet. 6 months AFTER completing chemo I started losing toenails. It doesn't hurt at all & there was a new nail under it, so it didn't look gross either. So don't panic. You will notice discoloration & u will have a ridge on the nail for each infusion. Try to always keep a little something in the tummy even if just a small jello cup, it helps a lot especially day 3-5. You will probably find that constipation is more of a problem than nausea. You guys are all doing great dealing with this. Keep the support going & you'll do just fine. Hugs to all, take care Fran

  • misslil
    misslil Member Posts: 229

    Just checking in on day 11 from my first treatment. Not back to normal, but feeling some better this weekend having not had any D issues since Friday. Guessing a lot of what was making me feel so shaky last week was due to that, and its contributing to some degree of dehydation. 

    At the best of times I'm having trouble with all the liquid volumes they want us drinking... Not too much is really appealing to drink at the moment, apple juice seems best but I can't drink 64 oz of that a day lol.

    The hair question is a tough one. Nothing is noticeably happening yet with my hair.  But to get it over with, I'm scheduled to have my wig styled and my hair cut off in a few days. Most likely on a day when I'll have meetings at work, so no time to get used to the wig look in private. If on the day that is wigging me out [ :) ], I'm planning to bring a scarf to throw over my new fake hair until it and I get used to each other. I've never worn a wig before ever, so no idea if this will be comfortable enough to wear every day.  I went to a specialist salon that works with cancer patients and other medical needs. They were very helpful and knowledgeable, and showed me a range of options. They showed me some human hair and blended human/synthetic types. I didn't find for the type of look I have now, that either of those really seemed much better than the nicer synthetic wig and I didn't want to put too much extra money into it. So I have a synthetic wig, similar look to my hair today -- better I suppose as it won't frizz in the rain, it's a little fuller volume, and the roots won't need touching up :P

    Best wishes to all

  • smilethrupain
    smilethrupain Member Posts: 133

    thank you 70charger and misslil

    A question for everyone here - any suggestion on where to find the specialized salons? I'm registered for the ACS look good feel good event, and my stylist said the he can order a wig for me, but I'd love to find a place where I can try those hat/hair combos - for weekends and errand outings.

    Anyone else getting treatment at Dana Farber

  • 70charger
    70charger Member Posts: 591

    Misslil I know drinking all that water sucks a big one, try adding some lemon or ice tea . It is important to save your kidneys, you must keep the chemo flushed out of the kidneys. My friend had prostrate cancer ( got red devil chemo, same as breast cancer chemo) He had to go on dialysis cause he lost his kidneys due to chemo, so it's hard but please drink & pee, drink & pee.

    Smilethrupain Maybe start a new thread to see if any of the ladies have one for you. Also maybe put where u are from, someone could live close by that could let you know where to go try one on.

    Keep on truckin Ladies, this all will soon be in your rearview mirror.

  • misslil
    misslil Member Posts: 229

    70charger, thanks. I've had some bottled water with lemon flavor, it's been giving me an off taste I don't like, and I haven't usually liked tea much I'm afraid. (  Though in this situation, maybe if stuff I like is tasting bad, things I haven't loved in the past will just be fine? Can hope. ) I tried some light broth yesterday, wasn't wild about it.

    Fresh lemon is probably something to try.  This afternoon I've been throwing a few ice cubes into things vs. drinking water cool from the tap or at room temperature. Or drinking if very very chilled which I tried last week & didn't like either. Soooo hard to please now ha.  With just a couple of ice cubes, is helping.  I'm also trying other stuff like watermelon (ok) and other things that are liquid-y to mix in although again they won't work in volume quantities (soup, ice cream, occasional Ensure drink or similar).

    smilethrupain, the place I went to for the wig services is collocated with a local cancer help center and medical complex.  I'd think the ACS might be able to suggest some local places for you to check out?   In the huge resource book from my hospital's patient navigator, she had a full page of suggestions including the one I tried but several others within reasonable driving distance.

    I signed up for the Look Good Feel Better class in mid-September. Figured by then I'll need any tricks I can get as I'll be going into round 2.

  • LisbethS
    LisbethS Member Posts: 88

    Smilethrupain, my breast surgeon and MO gave me hand outs for wig places that specialize in wigs for chemo. One of them is a provider with my insurance so they fall under in-network for me. They also sell breast prosthesis. The other one is not with my insurance but they were really helpful and there's a local charity that will pay for up to $250 of your wig if insurance doesn't cover it. So I would check with your MO etc. and google wigs in your area and call around, you might have something similar where you live.

    Oh, forgot to mention, when I was trying on wigs and they were having a hard time finding the right color for my hair, wig after wig, finally found one color that was close. Then, before leaving I said I wanted to try on a halo wig (no hair on top) to wear with a baseball cap since I want to go to my kids soccer games and ya gotta wear a hat in AZ . I figured I'd never find anything as they only come in very few colors and the first one they pulled out was my exact hair color. I put it on at home and no one noticed, when I told them it wasn't my hair they wouldn't believe me. I didn't want one attached to the hat, I wanted a halo so I could wear different hats and scarves with it. It has bangs that I can keep on or remove--velcro. I really like it. And it is so much cooler than a wig. Probably wear this more than a wig as I am not working so mostly for weekend events and errands...

    Don't know if I'll be able to rock the bald look as I'm pretty sure I don't have a nice cue ball under this hair, feels more like a lumpy, bumpy cantaloupe.

    Happy weekend everyone. Sending hugs to everyone.

  • Ware
    Ware Member Posts: 63

    I started chemo on the first. I felt foggy for the first couple of days after, but this evening I feel 100% like my regular self. I hope my body is not fooling me.....

  • seq24
    seq24 Member Posts: 451

    Ware, that is great news! Im starting AC on Friday. Very, very scared of what is going to happen and how I'm going to feel. I hope I am as lucky as you. Even though you felt foggy, were you still able to function normally, or did you find yourself really out of it?

    I just got back from buying all of the over the counter stuff they said I would need as well as high protein snacks, gatorade, etc. I surely hope I do not need all of that stuff in addition to all of the prescriptions I already have. Please post how you're feeling over the next few days. I'm right behind you on this road.

  • Shopgal2
    Shopgal2 Member Posts: 594

    if you are having a hard time drinking water try iced tea or grape juice. Last year after I felt sick drinking water because it tasted metallic so I drank iced tea or watered down grape juice. After sucking on ice during ac I couldn't even tolerate ice in my drinks. Still today I sometimes get nauseous looking at ice in my drinks. Or even any red looking liquiddrinks.

    As for constipation from zofran and chemo drugs check with your chemo nurse. My mo's nurse gave me great advice to be preventative with constipation and had me take stool softeners a few days before chemo and then start sennacot the day of chemo and a for a few days afterwards. That and dried prunes helped a lot.

    For hair loss, hate to say it but your pubic hair bolts first. For me my hair started to really fall out a lot on day 13 just before my 2nd infusion. It felt like dolls hair, really straw like before. I tried to wash it as little as possible and not blow dry it. Then right after my 2nd infusion my scalp hurt like when you have in a too tight ponytail. It actually felt good having it buzzed off, almost like it was taking pressure off my head. I still washed my head with shampoo and even used a conditioner on my scalp to soften the stubble. Eventually the stubble fell out and the bald ness felt good. I used hats and beanies even though I had a beautiful wig. I did sleep in a satin pillowcase and eventually used a lint roller to take off the stubble that was annoying. I think for me the fear of losing my hair and when I actually started to see it fall it out was most disturbing. That meant I looked like a cancer patient. But once the hair was gone it was freeing. I didn't care what people thought when I was bald. It made me feel braver.

    Please stay strong sept gals. And continue to ask questions. I hope what I wrote helps some.

  • seq24
    seq24 Member Posts: 451

    Shopgal-I am starting chemo next week. I am the most scared of the hair loss part. Not even scared--absolutely, positively horrified at the thought of no hair! I have a wig and have to look like myself for my job.

    You have the same chemo as me. How have you been feeling. I wish I knew what to expect. I can only hope that I can be as lucky as some on here and only experience minor SE. Please keep posting!

  • Shopgal2
    Shopgal2 Member Posts: 594

    seq I did my act last sept and I feel pretty good. Chemo was tough but doeable. It really takes a year from dx to completing treatment. Trust me ladies it does get better. It takes time but you will get to the other side.

    As so SE's you will only know what to expect once you get past your first infusion. Think positive and it will def help your mindset. I remember last year walking into the infusion floor thinking a sense of peace because there were people like me there and I didn't feel alone. Also posting in my sept 15 group helped a lot. Those ladies were my savior.

    As for hair loss itwas hard, I won't lie, but I did feel free once it was gone. Like many I identified with my hair; it defined me, and I had to let it go along with a part of me that got cancer. Bald me was strong and fought cancer. I worked hard on the new me since Jan this year. And the new me is 62 lbs thinner, healthy, proudly sports a wavy pixie, and is cancer free. It's a long ride to get there, but you will get there too. Think good thoughts, be brave, cry when you need to, don't apologize for how you feel, and remember to laugh.

  • smilethrupain
    smilethrupain Member Posts: 133

    thank you ladies. This is very helpful

  • CC2016
    CC2016 Member Posts: 94

    shopgal- some questions on your year later you... Are you rocking the pixie because that's all the hair you've gotten back or that is now your style? Lost 62 "chemo added" pounds or lost because of chemo? I've heard of both weiggain and loss with chemo but haven't heard what I should expect yet. I did just meet someone who is attributing her jump in several dress sizes to the hormone therapy she's been on for a couple of years. My new PCP in fact. I'm meeting survivors all over the place!

  • beebs2704
    beebs2704 Member Posts: 88

    Shopgal, thank you so much for sharing your tips and wisdom with us... I love your line.."Think good thoughts, be brave, cry when you need to, don't apologize for how you feel, and remember to laugh." I will keep this close in the coming weeks. I start next Friday

  • Shopgal2
    Shopgal2 Member Posts: 594

    glad it helped. It helps me also to give back to you. I am rocking a pixie because I actually like myhair short. I've gotten it trimmed a very little bit 2x and actually had my first hair cut last month. I was overweigh before chemo at 210. I only gained 10 lbs on chemo which I lost before I started rads. Once I was not getting steroids I lost the bloat right away. For my radiation I enrolled in a clinical trial my radiation oncologist was doing. The trial had me reduce my caloric intake by 25% and keep to 1150 calories a day.. Easy for me since I wasn't hungry after chemo and was just getting my taste buds back. I lost about 15 lbs during rads. I also joined a gym for the first time in my life and started eating a more plant based diet. I lost the rest after rads. My cancer was triple negative and can feed on sugar and carbs. So I approached the rest of my weight loss as a lifestyle change.

    During chemo my mo said it was ok to eat what I wanted to get nutrition in me. He never said to eat a certain way. Just if I was hungry to eat and take care of myself. I did eat a lot of protein during, salmon, avocados, and comfort foods like bland cheeses.I still had fruits, veggies and even salads.

  • Jaigern
    Jaigern Member Posts: 8

    I am joining a little late. I meet my medical oncologist on Friday. I had a double mastectomy a month ago. I am BRCA I so they plan to take my ovaries after treatment. They said they plan to start chemo this month.

    I plan to shave my head a week from today cause I don't want to go through pulling out chunks of hair.

    I am worried about working on chemo. My work is extremely demanding of my time (12 hour days) and not very understanding. Is anyone planning on working or not working during chemo? What helped make your decision? For those of you that have had chemo is working while on treatment doable

  • LisbethS
    LisbethS Member Posts: 88

    Hi Jaigerm, Glad to have you here but sorry you have to join this club. I'm BRCA2+. My surgeon wants me to take out my uterus along with my ovaries and fallopian tubes. Did you get the same advice?

    Also, you might want to add your DX and treatment plan to your settings. Do you know what chemo regiment you're going on? I'm on CT (cytoxan & taxotere x4) and the bone pain is really the only side effect I am having on chemo but it is almost unbearable. It seems those of us with pre-existing conditions have the worst problem with the bone pain.

  • nayda985
    nayda985 Member Posts: 270

    Welcome Jaigern!

    I am continuing to work while on chemo...i am a pharmacy tech..and i work 4...ten hour days at my job..my job isn't physical...i just prepare medication orders all day and answer phone calls, and talk to dr. or nurses and insurance about rx's all day..and i can sit on my stool where my computer is stationed...so that's why its doable for me...if i get tired i can just sit down and rest for a sec..and get back up and count rx's or ring someone up...i just have to constantly sanitize my hands and wash my hands and alcohol everything like the counters and phones....b/c i am not trying to catch anything..lol

    plus working keeps my mind occupied from the cancer radio in my brain...and i didn't want cancer to change everything in my life...i love my job and i am not gonna let cancer take it from me..lol