Starting Chemo October 2012

halfcan

I have a port and I think it was the best option available for me.  The pic line is something you have to cover and keep dry for showers and it hangs off you somewhere.  I would probably catch it on something and try to rip it out of me. :-)  The port becomes a non issue after about 4 days and it is just there under the skin. 

301724

Welcome Caitgrace! I love your statement: "And don't think I'm a Pollyanna ... I'm one tough tattooed pierced hell on wheels cynical woman who just started realizing life is too short to be anything but amazed!"

 

MrsCich

Not sure if you ladies have seen this before but I just found it on this site and thought it was so perfect, I had to share with others. I actually emailed this to a few people as well.





"Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.



You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.



You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.



The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.



The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.



Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.



You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.



You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.



When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.



I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.



Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.



For more on cancer, click here.



For more on Jeff Tomczek, click here.







Follow Jeff Tomczek on Twitter: www.twitter.com/C2Bseen"

marianelizabeth

Thanks mrccich! I am saving it too. 

halfcan I responded to mrscich on the IDC thread but copying here: halfcan I replied to mrs cich on the IDC thread but posting it here too - mrscich good about the surgery getting done and the port. There have been postings about the port/PICC line but the only thing I sort of gleaned from them was that the PICC line means you need to cover it for showers but easy to access. I have a BARD Power Port and so glad to have it (or a PICC line) as accessing it yesterday was awesome. Lucky too that the day before the pain and tenderness was finally almost gone. No pain on access either! 

Marlene, my eveving was better than my night. I fell asleep at about 10 but woke an hour later and hard to breathe. I gasped and wheezed, sweated  and then drank water and felt terrible with an instant sore throat. I weakly called mu husband for ice chips and fell asleep again only to have it happen a couple more times. I always have water beside me as maybe sinus drip or something else makes me have a dry throat. But this was different and I chalk it up to congestion due to edema. I too drank tons yesterday but was not peeing much. Today I found that I had gained 4 pounds since yesterday morning and my rings are all tight. So I figure that edema was also in my throat so when I woke up and coudl not breathe it was due to that congrstion. I am OK today though so tired and a bit headachy too. But am off to do an errand with my husband driving as not sure I would be safe behind the wheel. Glad you are working from home and have your dogs for company too.

Anyone else have that problem with water retention?

Neopogen shot tonight. A nurse friend is doing and thankfully after several conversations at cancer agency when they wanted me/nurse to come in so they could ovserve they agreed that a practising nurse would be competent! Enough asking a friend to come by but not for her to have to go to BCCA too!

Anyway, so glad this is underway and also that we have this sharing site

Marian 

Elocin

Love the inspirational email! Right on time!

MrsCich

Marian, my MO checks me for swelling/retention at every visit. She also wants me to call with any side effects. Perhaps you should let yours know.

Poke

Fastforward: I'm sorry you're having so much port pain and loss of motion! I woke up feeling just fine. I hope you feel better soon.



Hair cut. Feeling worse spirit-wise than I have so far.



Tomorrow's the big day for me - chugging water all evening and cleaning up the house a bit.



Love to all. xoxo

marianelizabeth

Poke, I love the photo! Good luck tomorrow. I just went for a 3 k walk to am feeling much better.

MrsCich

Love your hair, Poke. Good luck tomorrow. Wear your big pocket pants because you know we are there with you.



Much love to you!

Poke

MrsCich: I started to read your post but I'm going to save it for tomorrow during treatment ... Looks like a keeper Good luck with your PICC, I have heard though that keeping them covered with plastic wrap for showers becomes a pain. Ask lots of questions!

Fastforward14

Thanks Poke!  Love your new "do" - good luck tomorrow!  Marianelizabeth love hearing about your physical abilities through this trying time - you are an inspiration.  Mrs. Cich - great post! Have a great night all - tucking in early and preparing for my re-excision tomorrow and crossing fingers for clear margins this time so I can stay on track for my 1st AC chemo next Wednesday!  Never have been in such a rush to start something I was so dreading in my life - but each completed step gets us one closer to the hopeful end of this nonsense - sweet dreams

Jennie93

Today was my turn to get started.  Had a rough moment or two right at the start but got calmed down all right.  It was completely uneventful after that, just long and boring.  They give each drug separately, and very slowly the first time, in case of any allergic reactions.  I was there about 5 1/2 hours.  The nurses are all so very nice and kind.  Now I'm just waiting to see what kind of symptoms will show up.  LOL.  When do the SEs start?  Feeling pretty normal so far, just a bit woozy.  I've got all my remedies lined up and ready for whatever comes, hopefully.  They gave me the Neulasta shot to bring home, I'm supposed to inject it myself tomorrow, that should be interesting!  I've got my Claritin & Aleve ready.  The nurse didn't tell me about that one.  Good thing I read lots here!

Lou4of7

Ridergirl, nice to connect with someone from Ont.  I am from Cornwall area...1/2 way bet. Ottawa & Montreal. Are you moving closer to TO? Next Tues. the 23rd..long day for me...start @ 9ish..blood wk, visit with med oncologist@ 10, then PICC line insertion@ 10:30...then chemo @ 1:00 (my second). Hope it goes well  with the PICC line.. Scalp is quite itchy today...hair has started to fall out...but I still have a fair amount...(15 days post 1st chemo)..I receive my treatments @ the Ottawa Gen. Cancer clinic...they are excellent! I will follow the advice of a few on this forum...to take my Stemetil around the clock instead of waiting for nausea symptoms to appear over & above my Zofran (twice a day)...Had a diff. time with nausea the 1st time around..I have ''bumped up'' my protein intake in the last 10 days & it seems to have given more energy..found that adding 4 tbsp of Instant Skim Milk Powder to my 1% milk(one cup)...gives me an extra 9 grams of protein,& extra vit. without the calories!!!And it is quite delicious & filling too!I've read that we should consume @ least 1 gram of protein for each kilo (that is 2.2lbs) of our weight per day...so if you weigh 50 kilos...a person should consume 50 grams of protein per day....hard to do...need to choose well!! Wishing everyone the best in up-coming treatments & recovery!

Lou

ridergirl

Lou i am moving to the Cornwall area at the end of this month!!! Will be continuing my treatments in Ottawa so all new drs and stuff is a little scary

halfcan

Good luck today Poke!  We are all with you today so hope you got big pockets!!!  Love the pic. :-)  Hope your first night was uneventful Jennie93 and that the SE's are few.  I wish you the best with surgery today Fastforward.  MrsCich - I love the profile pic!  Are you feeling better after your surgery?   MArian - I'm wondering how you are doing today after that rough start you had with the chemo?  Crossing my fingers that last night was an easy and uneventful night for all.  Hugs

momto5children

48 hours post 1st chemo.  Nausea has set in, but controllable with zofran and tums.  Had to go in yesterday for my herceptin and the neulasta shot.  Having mild bone pain right now, took claritin, but its making me really drowsy and foggy.  Hoping I keep feeling this way, not too bad so far.  I have to go back on Monday to my MO for bloodwork and maybe another Neulasta shot, pending neurtophil counts.  Heading back to work next Tuesday, really excited, but worried I'll won't feeling well enough.  Poke- I love your hair, very pretty.  Me, my 2 brothers and my hubby are having a hair shaving party this weekend, so off it goes.  Have a great hump day sisters and stay postivie and strong!!!

marianelizabeth

I am feeling much better today though really tired. I had no breathing issues but just could not sleep. Maybe the dexamethasone. 

Lou there has been discussion here and on other threads on PICC line versus port. Only big dfference seems to be that you need to cover the PICC line for showers/baths. I have a port.

fastforward, I hope your rexcision is going well today.

Jennie, hope no S/E last night!

Poke, look forward to hearing how your day went!

Marian

Poke

Hello ladies. In at 8:45, out by 2. There were so many people getting treatment and it was so loud and bright, I just wish the environment was different. My boyfriend and best friend sat there through it all. I got really drowsy and slept the majority of the time. I had zero pain. I did taste the flushes, but that wasn't so bad. 

They just called and made my appointment for blood draw next week. Since I haven't had a true access (they inserted the needle while I was knocked out for surgery) they are going to take it from my arm at my request. When the nurse took the Huber needle out today, it felt like it was really stuck in there. I have an rx for EMLA but in my mind it seems like a lot of hassle. To me, blood draws are quick and painless anyways. I feel dumb having a port and not using it for draws, but maybe I will feel differently once I actually see and feel them access it. All I know is that today I was so thankful that I didn't have to have an IV in my arm for 5 hours. Fortunately, the worst part of the day was when they peeled all the tape off me from surgery to get the needle out.

Feeling ok otherwise. I have eaten an apple (honeycrisps are back in season!!!!!) and some water and a bowl of cereal and a cookie, just little stuff. Don't feel sick or overly tired. I am hoping to avoid Neulasta, but my WBC was at the low end of normal to start, so we'll see. 

I hope everyone is doing well, MrsCich especially from her procedure today! Hope it went ok!! I need to put some clear polish on my nails and toes but I am too lazy. Anyone having any nail problems? 

Love to all, xoxo

MrsCich

Thank you all for your well wishes. I started my day out on a bad note. I couldn't drink or eat of course and I so wanted/needed some coffee. Then I couldn't tie my scarf right and it was aggravating the shit out of me. Regardless, I had my surgery and was out in time to make it to the hospital for the PICC line placement.



Surgery was quick and I haven't looked at the nip that was worked on or the area on the other breast (at the bottom along the original incision line) that was open and raw. My husband has and said my nipple is now oblong rather than round and the other area which was about the size of a quarter is now a line of stitches about 3 inches long. Nip doesn't hurt but the other area is sore, burns and itches.



PICC line was put in and is uneventful enough to not write about.



Much love to you all. Hoping you all minimal SEs.

halfcan

Poke, it sounds like the first day didn't go too bad.  That is awesome!   I hear of nail issues with the Taxotere but don't know what chemo you are getting.  I am on FEC right now and the nails are not a SE.  But it will be when I do the Taxotere for #4-6.   My chemo nurse suggested that I do not use my port for blood draws unless I am having trouble with my veins.  I hope you face minimal SE's through this crap!  Hugs    

MsTori

My first treatment was last Friday. TCH. Through powerport. Had my Nuelastra injection on Saturday. Had some bone pain, mostly hips and thighs on Sunday. A little nausea. Then Monday night, severe headaches, all day Tuesday and finally relenting today. I had nausea today, but I think from the big C. Sorry to be graphic, but cleaned out and feeling a little better. I have been drinking a ton of water. I'm told that the side effects are less for each treatment. I pray so.

Poke- I need to take the plunge and cut my hair too. Cute pic. Hope your doing well.

Marian- I think it's the steroid that gave you the issues. It tends to cause fluid retention. Hope your feeling better.

Momto5- hang in there. It will get better. See if your allowed to take Tylenol. It really helped me. I was just limited to 3000mg/day and had to make sure my temp was normal before taking. Feel better soon.

Poke

Five hours after completion, already in bed. I feel like someone punched me in the uterus. It's tolerable but am disappointed to feel bad this early

MsTori

Poke-remember to keep drinking fluids. And mindful of your bowels. Mostly, let your body rest. Everyone reacts different. Don't be down on yourself. These are potent chemicals, and they are getting rid of our cancer. Praying you feel better soon.

marianelizabeth

Lots of news! I called the nurse helpline and discussed the fluid retention. She said if I had called that night they would have suggested Benadryl for then. Because I have been still on Dexemethesone, not sure if it was that since it resolved overnight. But the nurse did say they may decrease the pre chemo dex next time and to tell my doctor next week. Maybe the AC itself she said and others have mentioned same. But feeling much better and was nice to lose the 5 pounds though peeing lots!

Halfcan and Poke, I had my nuclear med through the first port access on Monday for my PET scan and then just before chemo, 4 big tubes of blood drawn by the chemo nurse so not sure why yours would suggest otherwise as I thought that was the point of the port - for both. For me it is a no brainer, I have very difficult veins and of course only one arm to use.

EMLA - I had it with me Monday but did not know they would need to access the port for the nuclear med so could not use it (no time). I hardly felt the needle go in so am not going to use the EMLA unless that changes next cycle.

mrscich, hope you can get some rest after a tough day!

I feel so fortunate to not have to worry about work and I am impressed by all of you that are doing that plus those with young kids too.  

Anonymous

Sorry to initially post and then disappear!  I thought I had favorited the thread, and was suprised at how "quiet" it was.  Well, duh, when I decided to look for it today, I just realized that I hadn't favorited, and that there were 13 pages worth.  I can't even really blame chemo brain for that one since it was before chemo started.

My liver biopsy did show that it had metastasized to my liver, and I began the first of 6, 2 week cycles of AC on Tuesday 10/9.  Even with 2 iv meds, my nausea got away from me at first so I learned the lesson of making sure to eat something during treatment.  Thankfully, the 3 anti-nausea meds that were sent home with me made it at least manageable. 

After 3 days of nausea, I actually felt probably the best since my surgery, but I found out yesterday that my WBC count is low. I apparently have moderate neutropenia so I'm completely freaked out and checking my temperature all of the time. I have had a low grade to 99.8, but I often have a low grade fever at night due to my autoimmunes. Thankfully, it seems to have gone back down, but I'm still very nervous.  I had the neulasta shot the day after my treatment, but my WBC was on the lower end of normal to begin with.  I'm just hoping that the neulasta kicked in today and gets that count up quickly.  This weekend is my birthday, and I really don't want to spend it cooped up and worried about germs. 

I did read through all of the posts, but it was a bit overwhelming. I hope that everyone's treatments and everything else are going well!

marianelizabeth

Thanks for filling us in nbnotes and also that you got past the worst of the nausea. I hope the Neulasta boosts those wbc! Let's hope those dense dose AC's get going on the liver mets!

Marlene18

Poke - I'm so sorry your first day is sucking. I think I ended up so juiced up on the decadron on day 1 that I was kinda manic. I drank so much water that day (which I understand ended up causing a bit of backed-up fluid retention, thanks Marian for the info) that I peed every hour through the night. I hope that is what saved me from feeling too bad though. Hydrate!

Just giving my day 3 update: I was warned so many times about AC causing constipation that I was taking the Senekot nightly as a precaution. Well, now I know that's not necessary unless you're havin issues already, as my body got me up nice and early (4:30 AM!) to prepare me for the good work the Senekot was doing. So I didn't sleep so well but other than that, this day has been fine. On day 1, my skin was an awful yellow colour which faded overnight but I see the sickly look coming back today. Ugh. Hoping my workout tonight brings some colour back. I just feel like I'm waiting for the other shoe to drop in terms of progressive SEs. I hope they stay at the current very manageable level, as I get mentally prepared for my hair follicles to release my hair (in about 10 days now) and make the final announcement that yes, I'm a chemo patient.

BethBV

I was told that the lab techs aren't qualified to access the port.  I has to be properly flushed after each use and the IV nurse was pretty anal about identifying precisely which kind of port I have.  She had to confirm what type by looking up my x-rays from when it was installed (during surgery).  She said I should have been given a card to carry with me.  Anyway, the chemo nurse that did my port flush last week said it is really important to have that direct line for chemo as those chemicals are extremely hard on your veins.  It's best to have it go into the veins nearer the heart so they get diluted quickly.  She said it would be a shame to take the chance of damaging the port for a simple blood draw at the lab.

On the other hand, I have really bad veins on the right and now cannot use the left (due to the node disection).  When I had my bone scan and CT scan last week the radiology nurse called in the IV team to access my port rather than trying to start an IV in the pathetic veins in my right arm.  She'd been eyeing my arms and when I said the left was off limits she looked crushed.  She finally said with a dejected tone, "I suppose they didn't put in a port when you had your surgery, did they?"  She looked so relieved when I told her that, as a matter of fact, they had!  The next day when I saw the surgeon he said that was a perfectly appropriate use for the port -- that is what it's there for.

marianelizabeth

The lab techs do not do it; the chemo nurse put the line into the port and then the PET scan nurse had that line to use. Also the chemo nurse did the blood draw. I do have a card that I am to take every time. I was given at the port surgery along with a pamphlet. The card has my name and all the surgical info on it too. And as far as I know, regular labs do not have anyone qualified to access ports.

Also the 4 vials of blood the chemo nurse drew were for a study and it was last chance as had to be done before chemo. She told me when they called to ask her to do it she was really happy to hear I had a port. 

BethBV

Did the dexamethasone give any of you a headache?  I took my first dose this morning and felt great all day (really great, lots of energy).  About dinnertime I got tired and a little headachy.  Took the second dose at dinner (4 or 5 hours ago) and I'm feeling very tired but not sure I can sleep.  My heart seemed to be beating fast and I felt a little hyped up an hour ago but now I'm just tired and very thirsty.  I think I haven't been drinking enough today.

Tomorrow I've got chemo and right afterwards is the "Look Better, Live Better" presentation.  Do you think it will be okay if my 13-year-old daughter goes with me?  She is pretty excited about her mom learning to do make-up (I've never needed it - big brown eyes, long, black eyelashes, fair to mid-toned skin, etc).  She's also interested in the wigs and head covering options that I'll be needing in two or three weeks.

I've decided I need to get a wig for certain things.  I am an engineer and, on occasion, have to be in public meetings.  My first challenge is coming up on Nov 7 (the day before my 2nd chemo).  This is a group of about 250 people, many of whom I've worked with for over 20 years.  We get together for these meetings twice a year and only a few of them know about my diagnosis.  I just don't want to be a spectacle or draw attention as there are some serious topics we'll need to get through and I can't handle spending all day standing in the back yakking about this, hearing about your Great-Aunt Tillie's treatment, reassuring folks that I'm fine, etc . . . I want to listen and learn on the topic of the meeting.  I think a wig is probably a better option.  Now, when my bushy black eyebrows fall out it'll be harder to "pull the wool over my eyes"!

Sorry - got off topic there.  Two questions really.  Mild headache and increased heart rate with Dexamethasone?  Or is it lack of fluids? Probably both.  Also, do you think it's okay to take a 13-year-old to the "Look Better, Feel Better" class?  She is mature and very verbal, smart and curious.  She knows all about my diagnosis and treatments (until she hits overload and tells me in one way or another that she's had enough for now).  I feed it to her in doses when she asks.