Calling all TNs
Comments
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MonikaV - I had the same feelings about my exchange surgery. It seemed like the other surgeries were so necessary but this one was sort of elective. I felt like I was pushing the envelope. I now realize that was silly -- I mean, how could I have kept those ridiculous coconuts in me?! This is necessary. Also, I felt kind of put through the ringer, beat up and tired. I didn't want anyone else hurting me. Even having blood tests would almost make me cry because it would hurt my feelings if they stuck me too hard. I just wanted to heal and get strong again - both mentally and physically. It's ok though - you will feel so much better with soft comfortable boobs again. And you will be so close to the finish line!! I wish you best recovery!
MBJ - I also received that email from a very good friend before I even started treatment. It is so hard to decipher what's real. We all want someone to just tell us what to do; give us the instructions so we can get through this! Anyway, I loved your "bamboozled" word!
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Heidi: I should be forced to wear the Stooopid T-Shirt for a day, lol!
SunnyCoconut: Thank you for putting into words what so many of us feel. Since I am a Uni, not getting the exchange was out of the question--I was so lopsided! I will be getting my nipple on Tuesday, and part of me wants to run away and put my head in the sand! Why can't I just be happy with my "Barbie" boob? Since I didn't get a port, my veins are nonexistent. Every time I get poked, I am a bruised mess because it usually takes a few pokes to get any blood out of me! I keep telling myself that after my surgery I will finally be done, but there is always that dark cloud of fear following behind me.
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I think that people sometimes prey on cancer patients...........MBJ, no hard feelings - I wasn't feeling well last night and know you were only trying to pass on good information.
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Sunny Coconut . Thanks for the encouragement. When did you have your exchange? Silicone or saline? If silicone, do they feel cold to you? Sorry so many questions.....
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did anyone keep working who took FEC-D?? I am thinking I will but not sure if this is wishful thinking or not
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My wife kept working all through the FEC. She would take 2-3 sick days after every treatment and then go back.
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MonikaV - I had silicone, my exchange was in Nov. Sometimes I think they are cold, but I remember my real boobs being cold sometimes too, especially after working out. What's really weird is when you get a chill and it almost feels like your nip is shriveling but you don't have one! Well not a real one anyway. The phantom headlights!
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Coming up for air now that surgery is done! I was released yesterday, and am feeling pretty good. Not on any painkillers, and very little discomfort. The home nurse changed my dressings today, and all looks great. My surgeon thinks I'll be able to get the drains out Monday, yay! I had a bit of a rough night after surgery because they gave me narcotics after anesthesia, so I was vomiting a lot, but once they got that under control I did well.
My BS said she didn't see anything that I should be concerned about, and that my nodes showed chemo effect. She also commented that the breast felt "hormonal" with lots of fluid. I think I may have been developing a little breast lymphadema, but I will mention the hormone thing to my onc just in case. So no obvious malignancy, now I just wait for the path report.
Beccca - I'm glad to hear you are also doing well!
Regarding diet, etc., I'm using "the Anticancer Diet" book. Workable, doable, reasonable diet changes. Low fat, good carbs, high in Omega 3s, lots of fresh veggies and lower carb fruits...honestly, it feels like a diabetic diet, and some studies have suggested a link between TN and insulin levels. My goal is to keep my body in a good state with regular exercise and small, healthy meals throughout the day to keep my insulin steady. And have the occasional crap meal and wine
. Cause life ain't worth living without some wine here and there!0 -
I had my nausea and vomiting this a.m. I called and got zofran called in for me. I don't know why it hit me 2 days after surgery, but it did. I have been doing my arm lifting exercises that the BS showed me to do. They are kinda hard when you start, but by the 5th or 6th rep they don't hurt as much. I do think I am getting my arms back a little more each time.
Suze- I am waiting for the path report too. I am thinking I will hear about it next Tuesday. Glad you are doing good, too. I have had to take vicodan the ses 1st 2 days, but trying to go to just tylenol this afternoon and early evening.
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Suze- Glad to hear you are doing fine after surgery.... Yeah!!! Finally done and over with!
Beccad- Happy for you too and glad to hear that everything is under control.
I'm 2 weeks past my surgery (right mast. and node dissection). My doctor had to give me something for the pain I have in my arm and armpit. It is due to nerve damage were the nodes were taking out and it feels like I have a bad rash on my skin and it hurts to the touch or when my clothes rub against my arm. He says it could last for a while. I had to take Dilaudid for my pain because I couldn't do my exercise if I didn't take something before and Tylenol just didn't do anything for me. Today, I feel less pain and it feels good. I just take the meds for my arm pain and nothing else. I have an apointment with a PT friday because I have a tendon that is stopping my arm from going up. It feels like if I have a rubber band in my armpit. Hope I will be back to normal soon..................
Oh, and I should get my path report in 2 weeks. Can't wait to know.....
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MJB..you are anything but STOOPID....we all can wear that t-shirt sometimes..chemo brain is our excuse.
Babs..glad you are feeling a little better...I had a lumpectomy so I really can't comprehend the masectomy ordeal.. good luck to you!
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Kymn - I didn't work through chemo or rads. My health benefits through work covered my salary so I took the time to focus on treatment and my family and I'm glad I did.
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On the other hand, I can't imagine staying idle during treatment. Nothing to do but think about my misfortune. I do work from home and have a desk/phone, but very technical job. I would have been covered by sick time for a year.
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Happy for those who are past surgery! Now you start healing. Final pathology is hard to wait for.. I remember it well. I was on pins and needles until I got that paper. The pain killers have their own set of SE's, but are needed by some for a while. Each person reacts different.. each heals at a different pace. We go through Hell on earth during this process and I think sometimes we are very hard on ourselves expecting we should get over it, or deal with it, or bounce back. We wonder what we did wrong, IF we did something wrong, and question everything we're doing from diet to exercise to "positive thinking/angry thoughts causing it". Just go easy on yourselves. Everything you're feeling is normal.
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Suze & Becca: Glad to hear you are both doing well!
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I was just in the process of filling out my coverage from work, had recently started a new job about 3 months in when I was diagnosed so I was turned down. by boss has offered to pay for half of what I miss for up to 4 months so I kind of need to work as much as possible he is very flexible about when I will be gone though so that is good. I am hoping through the FEC part I will be able to work at least two weeks between treatment and save some of that time for the D I hear that is harder. I guess I will see what happens I know I cant push myself but its stressful not knowing if your going to have enough money coming in. Damn I hate this. Well officially one week today before treatment starts not much time to back out if I wanted to lol.
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Kymn: Wow, I am so happy you have a supportive boss
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yes he is, he is paying out of pocket as I have no insurance
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Yes, Teka...we have provincial heath insurance and all treatment was covered (surgery, chemo, rads, onc appointments, scans, tests, etc.). In my case, what wasn't covered was the Neulasta shot because it was prescribed and given on an out-patient basis. Fortunately, it was covered on my extended health plan from work.
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we dont automatticly get that shot in alberta a frend informed me, hoping I dont need it dont really want to add bone pain to the list
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Yes, it was $3,000 per shot. Lol...I got lots of Air Miles as I purchased four times (one for each Tx) on my Air Miles MasterCard. I would then submit each bill for reimbursement from my health benefits company.
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Kymm - that was very generous of your boss. I was in a similar situation, having been with my firm for only 9 months when diagnosed. They told me to take whatever time I needed and there would be no reduction in my salary (which i offered). It made things so much easier and less stressful.
Regarding the nuelasta shot, you may not need it. I never had one. My onco only gives them when needed. I never ran a fever and my blood counts rebounded to normal levels every time. I was glad as the SEs from the shot seem to be as bad as those from the chemo. I am not sure about your age, but you look relatively young. I am 40 and was told that most women my age do not need the shot.
Good luck with your first chemo! I am sure you will do great.
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Kymn - I wanted to wish you luck with your first chemo. My onc gave me the Neulasta shots automatically with my AC, but my side effects weren't too bad. A little bone pain, tender skin, that's about it. I didn't get anything automatically with my Taxol/Carboplatin, but needed Neupogen shots the last five weeks. I hope it works out for you!
Babs - I'm so sorry you are still suffering pain, that is awful
. It is bad enough we have to go through all this, but extra pain is even more unfair. I hope it eases up for you soon.
Fingers crossed for those of us waiting on pathology reports! I'll hear sometime after Monday...0 -
Hmm.working during treatment..I did..went to work b-4 treatment..had my dh pick me up and take me to treatment..then went back to work after treatment...looking back now..I'm wondering why I did this but I think it was to prove to myself and others that chemo or cancer wasn't going to slow me down..I pushed and pushed myself..I had a treatment on a Wed, the next day had the nuelasta (always had to have it..even though my counts were well above normal).then went to a track meet that my son was in...got caught in torrential rains..then my son's team won their event so we had to move his grad party until later..made 50 phone calls on the way home from the meet to change the time, got home, did laundry, made dinner..and then I had..an attack..a spell.whatever..I was practically laying in my washing machine..had to actually sit down for 15 minutes until I felt better.
After..that..I decided I had better take it easy...that scared me!
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I have four Taxotere & Cytoxan treatments with a Neulasta shot the day after each.
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I have been doing alot of reading on PARP inhibitors have any of you heard of this or are looking into this. From the sounds of things they are so close to having a targeted thearapy for us triple neg girls I cant wait to see what happens. It might already be being used in the USA I am going to ask my onc about it on wed when I see him
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Ah PARP. They were supposed to be approved already. But the drug companies screwed big time and now everything hangs in the air for at least half a year. Too bad, this could be one of our best (last) chances.
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Hi all,
I will be starting my chemo treatments March 17, Cytoxan and Taxole. Onc said Neulasta is a must-do; at least I can do that at my hometown hospital. Chemo will be 25 miles away. I get my port Monday and also echo-cardiogram. If I "pass", I will be in a clinical trial. Am more nervous about the Neulasta than the chemo at this point. They told me they would get me prescriptions for the nausea, etc. before I go, so I'm thinking I will have them all filled and waiting. Would hate to need it in the middle of the night!
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I had the Neulasta shots automatically after my 4 AC txs, but that was because it was protocol for the clinical trial I was in.
I had the disability insurance available and I took it with no regrets. I'd paid into the system for 25 years without ever really thinking I'd need it, but was too nervous not to have it. Work provided long-term disability at 50% of my base pay after being off work 6 months. I had paid quite a bit extra to make it 60% of my base pay and to add short-term disability to cover me until I hit the 6 month mark. Along with the physical SEs, I was a mental and emotional wreck going through treatment, so was afraid I'd screw up if I did try to work.
I left work in early Feb. 2010, and my first day back is next Monday! So I've been out a little over a year. Financially, it's been a little tight, but mentally a huge weight lifted off me not having to work. I think it really depends on you and your circumstances. Some people have to work, and others would be more stressed not working, so I don't think there's one particular way to handle the work question.
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I just noticed that today was Laurajane's birthday so I wanted to wish her Happy Birthday! I hope everyone has a good weekend.
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