Chemo starting November 2018
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Lisa - that’s wonderful news! So happy for you and sending positive vibes your way. Hold tight to your place of peace and I love the visual of your “Team Lisa” co-workers.
I have been surprised at the blessings that have come out of this experience. They definitely help during the dark days, though some days it is hard to remember the blessings. I may not have the t-shirt, but count me in on Team Lisa
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MissouriCatLady- I'm so happy for you!! Even if only 1 has shrunk that much it must be a HUGE relief!! It gives me hope also that mine have shrunk also! (BS isnt going to do any imaging before surgery
) I'm glad you have such great support at work....go team!! Good luck with your appointments and try not to worry! You've been given time to learn what the next steps for you should be and be peaceful with your decision ((hugs))Aglaja- It's such a relief when chemo is finally done... one mountain top achieved!! Good for you and welcome to the "chemo is over club"! Here's to each day out from it and celebrating the return to 'normalness' ((HUGS))
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Lisa and Nanette - I think the wait for surgery while finishing neo adjuvant chemo makes the decision even harder. If we had surgery first like most of the other do then we wouldn't have had all these months to keep circling around the different options. I've made up my mind and changed it at least 3 times since getting diagnosed.
Taxol #7 this week and I am exhausted all the time. I've given up trying to cook dinner in the evenings, I'm too wiped by the time I get home. I go next week for another MRI to check on the progress the chemo has made on the cancer. I'm jealous of your ultrasound Lisa, I wish they'd let me do one. I hate those MRIs! After the MRI I can make an appointment with the breast surgeon to discuss options. In my head I've ruled out a lumpectomy. When I met with the BS before chemo he thought a nipple sparing procedure could be a good option and since then the more I think/research about it, the more I want to go that route. I'm suffering from an overabundance of options paired with a natural tendency to waffle. I'll be changing my mind and driving the surgeon crazy right up until surgery time.
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HazelNut omg I remember being that tired!! What I did on Monday and Tuesday was assemble out meals for Thursday thru Saturday and freeze them ...my DD or DH cooked on Sundays or we ate out. It was really helpful just to be able to pop something good into the oven or microwave.
Personally I'm thankful for the 3 month wait. I felt too pressured at the start to do surgery without being sure of what to do and my team of Drs were good about respecting my wishes. When chemo was done I was terrified of going to see the Plastic surgeon I really was. He was so cool calm and collected and put me right at ease. He explained what would happen and what type of breast implants and temp expanders he preferred using. It was really helpful to actually SEE FEEL AND TOUCH those things! They moved from being alien monsters to something more tangible and realistic. He then asked me what did I want to do. Immediate reconstruction (with implants or temps) or did I want to wait until after my mastectomies had healed (3 months down the road). He told me about tattooing, about how he could make me nipples and areolas too (down the road).. My PS made it easy for me to leave his office and no that there was NO pressure on me to do anything until I could wrap my head around it all. I'm so thankful for him!
You know I think having that pressure removed brought me peace and I did pray on what to do and to also tried to talk to DH and DD and my 2 adult sons and my own Dad. When I made the decision this past week to do immediate reconstruction with temp implants I finally 'knew' it was the right decision for me and I still do. I'm not scared about the surgery anymore...just concerned (worried) which I think is normal. I mean we are talking major surgery for each of us!
I'm jealous of you and Lisa to get to actually SEE that the tumors have reduced is wonderful!! Me I'm going by faith and faith alone as my BS doesn't think its necessary to have an ultrasound or breast MRI. But that's okay too because I KNOW that God is bigger than breast cancer!!
Hugs to all on this journey. We are braver than when we 1st started this journey!
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The neuropathy is back with a vengeance! I could barely open my mascara tube this morning. I joked with my husband last week that I wasn't going to tell the doctor and nurses what my side effects were like because I didn't want anymore pauses and then last week when I had my appointment the oncologist looked at me very sternly and said "Don't you dare hide your side effects from me". I thought my husband had messaged her behind my back to tattle on me! She said no, once the side effects start getting bad a lot of patients are tempted to fib just so they can push through and get done with chemo and she could see the same look on my face that her other patients get at the idea of having to take another break. I reaaalllly don't want to tell her about the upswing in numbness/tingling. I just want to get done. You have no idea how long its taken me to type this paragraph though. My fingers are so unhappy.
I'm officially "topless" as I've seen it referred to on other boards. I've done away with the hats and scarves. Each day I'm looking less like a cancer patient and more like Brittany circa 2007. It was more difficult to make the hatless plunge than I thought it would be. It feels very vulnerable and exposed to be out in public like this. Way fewer hot flashes though.
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ACJ - thank you. I am so lucky and grateful for the support of my co-workers and family. I don't know what people do that do not have that support, it would be a terribly sad thing to go through this alone.
Hazel-Nut, I'm sorry about the neuropathy. I understand, although mine is not as bad. I couldn't open the salsa yesterday. I read once you have a mastectomy, you can't open child-proof medications, just in case anyone didn't know that (I didn't, but I believe it). Kudos to you for your Brittany circa 2007! You go girl! I am looking forward to the day I don't look like a cancer patient, yay!! I'm still as bald as you can get. The chemo nurse told me 2-3 months before any hair comes back.
Nanette, way to go on the meal preparation! That is awesome! I am thinking of switching my PS appointment until after I see my surgeon, so I will know what it is, for sure, we are going to do. I am in the waiting stage, waiting for my platelets to hit 75,000, and see the surgeon at the end of the month.
I cried after I left that ultrasound, and I thanked Jesus. My family and friends are praying for me, and I believe in prayer. I feel somewhat guilty because I don't go to church anymore. And then I think about going back to church, and I feel guilty, would people think I've gone back because I got sick? I have what I call a "personal relationship" with Jesus, in that I talk to him when I am alone. My brother, who goes to church, told me when I told him I was sick, "trust in Him" and "look to Him for strength" (I wrote those things down and read them every day). I've never had a lot of faith, if that makes sense, and maybe that is why I was given this situation? Maybe. I did send a note to my oncologist and told him I'd like to give him a big hug. These medicines, as sick as they make us, keep us alive and help kill these cells. I pray for you women every day.
I hope everyone has a good week. I hope you can take a moment and sit outside and listen to the spring sounds and have some nice weather. We have come a long way, haven't we. Love and hugs, Lisa
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Missouri.....I have faith...it should physically move mountains. I believe that I was 'given this' to enhance? strengthen my faith? I don't know. I think it has moved my DH who is a fence sitter away from God...why does a loving God give cancer to people?
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Nanette, thank you for understanding, and you do understand. My DH is the exact same way. I mentioned going back to church, and he asked me to wait. I've always gone without him, until I quit going. Well, he went long enough to get baptized, actually, so I shouldn't say it like that. His mother died a long and painful death to lung and pancreatic cancer and it does pose that question, doesn't it. Thank you for letting me talk to you so openly....and understanding. My DH is very good to me, don't get me wrong, he is the best. He is my therapist. Hugs to you.
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I believe in GOD, I pray every night, but I hardly go to church. I tried going back after diagnosis but couldn't make it every week. I am planning to go back after treatment and be an active parishioner hoping to find there the answer to WHY ME. I was told that GOD has a plan, something good will come out from this...
Hang in there sisters, stay strong!
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Hi all!
Your posts about surgery are just what I was looking for. I'm meeting with my BS tomorrow and having my last chemo (taxol) Monday. YAY!!
I decided when I was diagnosed that I would have a double mastectomy. Too many have the cancer come back, and too many have regrets that they didn't take them both. My BS disagrees and thinks I'll do fine with a lumpectomy and radiation. Actually I would have to have radiation either way. He says that there's a 5% chance that my breast cancer will come back. If I do get cancer again, it more than likely won't be breast cancer. It'll be another form.
I'm leaning towards doing what he says. After all, he's the professional. Chemo has been hell even though I don't think I've had the SE as some as you. I can't imagine all of the surgeries, etc that would come with reconstruction. I'm ready to be done. PERIOD.
Anyway, thanks for hearing me vent and if you have any advise, please share. I doubt I'll get any sleep tonight. I hardly get any anyway due to the massive sweat attacks and freezing attacks I have all night long. LOL
Love you guys and drink that water!!0 -
Anxious, thank you for your comment and I hope you are doing well!
Emily, congrats on your last chemo, yay, hope you can ring the bell!!!! Ring it loud! I won't see the BS until next week, they asked me to wait 3 weeks to get my platelets up to 75,000. I am glad you are getting a lumpectomy and hope the radiation doesn't cause too many side effects. My co-worker's niece had radiation and she told me to use the little makeup sponges to put lotion on, I have heard they give you Aquaphor lotion to use. I think I have radiation in my future, depending on what type of surgery my surgeon recommends (I am hoping for a lumpectomy too, but am keeping my mind open to whatever he tells me). Hope we all never have to endure the chemotherapy ever again. Best wishes to everyone today!
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Hi ladies (and gents), had my last chemo taco LAST Friday and I am happy happy happy to say that I did not have to sit in that chair today. My onco decreased the dosage by another 25% for the last one due to the progression of hand foot syndrome. I had pretty swollen ankles and red painful soles of my feet most of the week (even with icing at home and during chemo sessions). Had some hobbling days when I was actually at work longer than intended (which would be all the time I spent at work, if you asked my husband). My feet this week are much better, ankles are still a bit swollen. I've got the peach fuzz coming back on my head, it's about 1/2 inch long (much lighter in color and super fine) now. I've started to shave my legs again (can't say I missed that a bit).
I have a weird new super soft super light facial hair thing going on. Anyone else?? I've taken the electric razor to my freaking face - what's up with that??? Not sure if it's the continuation of the shut down of my ovaries due to chemo or the resurgence in "hair growth gone wild". I've not previously ever had to deal w any facial hair issues.
I have my next surgery date scheduled, 4/12. Met with both the breast surgeon and plastic surgeon last week and this week. Had another fill at the plastic surgeon to stretch my skin some more. This surgery date will be for exchanging the tissue expander (TE) with a round smooth gel implant, fat grafting some from my abd to a hollow under my collar bone and removing the L nipple (not a clear margin from the initial mastectomy back in Aug '18). They'll send the nipple thru pathology and hopefully it is negative for any additional cancer cells. I have my pre-op physical and blood work next Monday w my primary care. Then about 4 weeks or so after this surgery I report for radiation.
The A of the A/C treatment is Adriamycin or aka "red devil", so called because the color of the drug in the bag. It's like fruit punch red. Gross.
Mastectomy and movement afterward from my experience : 2-3 days incredibly sore but not actually painful. Upward movement of the arms I didn't try beyond shoulder height until 2-3 weeks past surgery. I still had drains in for about 3-5 weeks total. One drain was removed before the other. Draining those babies was gross but important. I had frozen shoulder and saw a physical therapist to help grease things along. I certainly had an easier time than some of my surgery girls from the same month. I didn't get a whole wardrobe for this, used wide necked shirts and loose v-neck and a few button downs. I did get some new front close bras. You will either be sent home in a surgi-bra or ace bandages. Leave these in place as long as the Drs say - the compression will help with the swelling. I had a no shower rule post surgery for 72hrs. You can safety pin your drains to your shirt or leave hanging on a lanyard. I preferred the lanyard and didn't catch them on any thing. I showered with them on the lanyard once I was ok to do so. Feel free to ask more qs about surgeries and my experiences. I'll answer if I can. I def suggest joining one of the forums for whenever your surgery month is. I found the collective answers and experience very helpful (much like our chemo starting Nov forum).
Sorry for the super long post - MB1
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Maddie, so nice to hear from you. Big congrats and hugs for that last chemo taco treatment, yay for you!!! Yay yay yay!! You are way ahead of me, and thank you for all the information you shared. I will see my surgeon on Wednesday (they had me wait 3 weeks from my last chemo and my platelets have to be 75,000 to have surgery). Does the TE hurt? I don't know what I will be doing, but two of my co-workers that work in a different department have both had complications, one of them major complications, and they both have the same surgeon I'm going to see, which makes me nervous, and tissue expanders. One of those ladies had a double mastectomy and that red devil. I don't see a plastic surgeon until the first week of April, once I know what my surgeon wants to do. I read implants are not for overweight women, so I didn't think this was an option for me. You've provided a lot of information, thank you for that. So nice your hair is coming back in. I am bald as an egg still, I guess it takes longer with the TCHP. Could I please ask you, how long were you off work? My co-worker said you can't drive or work with the drains in, would you agree with that? Thank you for sharing all this information, it is very helpful to me. I hope everyone is doing well today, and wish everyone a good week. Sending you a hug, Lisa
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Happy Monday!
Good to see you MB1! Congrats on getting through chemo! I swear my leg hair is growing twice as fast as it did before chemo. I'm right back to all the old body hair struggles.
I ended up not having my MRI last week because the insurance denied coverage. It has to go to medical director review so we rescheduled for next week and hopefully by then they'll have decided to cover it. I also scheduled a second opinion with another breast surgeon and a plastic surgeon at a hospital more local to me. The breast surgeon I've been working with is wonderful in theory, I've just developed some sort of mental block against him. Silly as it may sound I think it's just because he was the first doctor to really talk to me about my cancer and make it all real to me and that seems to have made him the bad guy in my head. I know it's ridiculous to feel that way and I'm trying to get over it. I'm thinking I'll either meet with the second BS and reaffirm that my original one really is as wonderful as everyone says he is or I'll end up loving the new surgeon and not feel so bad about making the switch. Second opinions kinda feel like cheating on your doctors...
My fingernails are falling out and my toenails are as thin as newborn baby nails. I've been dreaming of a pedicure for months but not gonna happen with my nails in the state their in. DH has a work thing in NYC on Friday and I've taken the day off to go with him and we're going to turn it into a whole weekend. I'm excited! Hope the weather holds up.
4 more taxols to go! So close to being done but still so far away. My oncologist has hinted that taking another break is still an option because of the chemo side effects but I swear to all that is holy if I have to take another break I'm going to lose my mind and ya'll are gonna see me featured on the news. Last week I was expecting to have to do some quick talking to keep going because truthfully the neuropathy is getting bad again but at infusion time the nurse didn't ask me a single thing about it! Usually its a round of 20 questions before they give me chemo but last weeks chemo nurse didn't ask me a single question. I'm a nurse so I know that I should have reported that to his nurse manager but... ¯\_(ツ)_/¯ . Snitches get stitches right? Do you guys usually have the same chemo nurse? Mine are always different.
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I had my pre-OP appt at my PS office today. They took a total of 8 sets of pics of my girls. Drains could be in up to 6 weeks!! Ugh and they want me to bring a front closure sports bra to surgery because too many women complain the surgical bra hurts...I don't care if it hurts just support. I will be able to shower after 24 hours whew! I have 1 new button up PJ set with shorts...DH treat and they're satin too!! I have a lot of tops I can step thru and only 1 button up shirt and lots of shorts. I still have to make my mastectomy pillows but they won't take long
I have to go to do pre-OP blood work for BS on Thurs and then to my Primary so she can do an EKG as clearance for surgery and then drop off her signature to PS office..... I had my blood work done this afternoon. Then it'll be me trying to STAY OUT of my head before surgery. Im6 not worried just scared... having 2 very all heart attacks seems mild to bi-lateral mast and recon. I've never been "under the knife " before.
Thanks for sharing the info Maddie much appreciated ((hugs))
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I see many of you ladies did chemo prior to surgery. What was the reason for that? I had my surgery first and then treatment. Just wondering about the reason for treatment prior to surgery. I because of having a lumpectomy instead of a mastectomy?
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bookworm I had chemo 1st because I was unable to make an "instant" decision about surgery. You see 1st it was to have been a lumpectomy because I only had 1 lump. After the breast MRI we found that 1 spread to 3 in different areas (in 3 weeks) so a mastectomy became necessary. Also my decision to have chemo 1st was to shrink those breast tumors down and to eradicate anything that may have escaped my breast into my body.~Nanette
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Bookworm - I had chemo first to try and shrink things and it did. I see my surgeon tomorrow to see what the verdict is for me.
Nanette - Sending you big hugs. Keep your mind at peace (easy for me to say at this moment). I go get my lab today to see if my platelets pass. Your one spread to three in 3 weeks, oh my goodness. I have two, one of which they said was benign, but it shrunk as well. Surgeon told me on the phone this is multifocal, and this may not allow a lumpectomy, I am trying to be brave, like you and Maddie, but I am really scared. He is questioning why it shrunk, and I am too. Thank you for being shining examples for me. You are both so brave.
Hazel-Nut - Hope you are able to get your MRI. I wonder about second opinions myself, glad you are going to get one. I haven't had my first opinion yet, and am already thinking about a second one. I can totally relate to the bad guy in your head. These two women that work where I work that have had problems are making me very nervous about this surgeon, their surgeon. I hope you have nice weather this weekend so you can enjoy your weekend getaway with the husband. Hope you have a good time! We have a choice here, on which chemo nurse, and I always sat in the same section with the same lady, because she is always so nice. I'm sorry you had someone that didn't bother to ask. You try and take care of yourself, don't overdo it to get done sooner - I understand, my treatment was delayed twice and it is no fun to have to move the calendar and mess up future plans.
Our cancer department is having a tea and cookies event in April and I'm thinking about going. They are a bunch of nice people and I am very fortunate. Hope you ladies all have a good day. Love and hugs, Lisa
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Bookworm - I have had neo-adjuvant (chemo first) chemo because of my triple negative status and also because my cancer falls into a rare subtype called metaplastic. In this instance chemo is done first to try and see if the cancer will have a pathologic response to the chemo. The goal is to go in to surgery with as little remaining cancer as possible then remove the breast tissue where the cancer was. If I had felt very strongly about surgery first then they would have allowed it but I went in to this knowing in advance that if neo-adjuvant was offered then that is what I wanted. It's a nervy kind of thing though to go all these months with the cancer just hanging out in you while waiting to get through chemo when others are having it cut out straight away. Its also really exciting to feel the difference with the cancer as it responds to the chemo.
Lisa - they denied my MRI again. The insurance feels it isn't necessary because I had an MRI in November and doing another one right now would be considered just checking to see how the chemo has worked and wouldn't give any benefit. Its not like I want the MRI but the surgeon won't meet with me to schedule surgery until I have the MRI and the insurance won't approve the MRI because they don't think it's related to surgery. Yada yada, and on it goes.
I got home last night and sat on the edge of my bed while taking off my jewelry and woke up 3 hours later. I don't even remember laying down lol. The chemo fatigue is intense. I'm a terrible napper though. If I fall asleep for even 5 minutes my brain seems to think thats good enough and I end up awake until the next night. I avoid falling asleep during the day at all costs. So my brief nap cost me an entire nights sleep and today I'm exhausted. I'll just have to power through until bedtime.
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Hazel-Nut - that is a good way of describing neo-adjuvant chemo. Insurance - drives me nuts. You handle this very well, I have to say, another brave and patient example for me to learn from. I'm sorry your nap disrupted your sleeping. Some days all it took was to shut my eyes for a few minutes and I was asleep (at home on the weekend).
I am hopeful to have an energy level again one day. Even 3 weeks post last treatment, I still have diarrhea and am still tired. The chemo must stay in your system a long time, for which I am grateful too, while we wait for the platelets to go up and the surgeon to tell me what is next.
We went out to dinner with friends over the weekend and I ordered a beer, my first beer since November. From what I have read about alcohol, it is not a good thing for breast cancer patients. I've read a few articles and it stresses moderation - and 12 ounces. My mug must have held 24 ounces, it was big. I won't do that again. I think I shall become a non-drinker, save money and calories.
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Good evening ladies!
TE talk - I don't know if my plastic surgeon had a restriction on putting in TEs for "overweight" ladies. The last time I didn't consider myself overweight was actually 20+ yrs ago. The last time I looked at those [insert expletives here] BMI charts they were all crazy based on 1960/1950 data where everyone ate huge amounts but also had crazy amounts of exercise bc of physical labor. There are so many of us now that work in offices and the American food system is so out of touch with needs (ok, I partly blame the media for this -- I won't get on too high a soap box) and eating healthy can be so expensive (enter food deserts)..... Ad nauseum. A 'healthy' weight does not look the same on everyone. ANYWAY, the purpose of a tissue expander is more of a place holder and to creat a pocket where the implant will go that doesn't just fill with fluid. Some folks and surgeons have the ability to go from mastectomy direct to implant, others situations and preference is to do a 2 stage reconstruction (TE then implant). I knew I was going to have to have radiation tx but we were uncertain about chemo, we made surgery decisions based on the biopsy results from the 7-8 different biopsies. It gave a basic picture of what all the areas of possible tumors looked like in terms of a cancer profile (ER, PR, HER2 neu stats) to allow them to give me a recommendation on surgery options. Post surgery pathology from the mastectomy and sentinel node removal, for me, showed not clear margins for my poor L nipple and more cancerous areas in the lymph nodes than originally thought. I had a 2nd surgery to completely remove all my axillary nodes on the left side (ALND). A lot of surgeons have differing opinions on complete ALND vs just sentinel node and irradiating the heck out of your nodes post surgery. I think a lot of these opinions depend on where the surgeons went to school, where they had residency at and the practice that they are currently operating in. There is no 'right' way necessarily with that, only what is right for you. While there are some "industry" standards of care, it still varies widely. Get as many opinions as you like - I went to 2 different medical oncologists and 2 different breast surgeons. Only sought the opinion of a single plastic surgeon and single radiation oncologist. I read reviews online direct from the surgeons website as well as Yelp/Google reviews and insurance websites. All of the folks I have gone with for my care, I know of someone who chose the same practice or same dr. My rad onc said she prefers to do rads AFTER any type of surgery instead of before. She said that in most people she found that the risk of having and adverse skin effect with doing radiation then surgery was greater than surgery first then radiation.
I think they make the TE deliberately uncomfortable so it's quite the relief to have the implant in once it happens during the exchange procedure. I don't know that it actually hurts, but will certainly say that some areas I originally thought was prolonged swelling as a result from the surgery were actually the edges of the TE. It feels like a ginormous triangular oddity. I healed well from all my surgeries so far, no complications. Time off post surgery - I think can also vary widely. I have a pretty physical job, combination of sitting, standing, lifting up to 70-80lbs on a regular basis, lots of stairs and pushing things up to 100 or more lbs. I also do a significant amount of computer / desk work. I took 2 weeks solid completely off for each of the surgeries. Then I started to do some teleworking from home, then full time telework. I did not go back into the lab/office area until all my drains were removed. Again, the conditions of my job made it more likely for exposure to contaminants that could cause serious infection if I had gone to work in either the lab or office setting. I did part time on site once I was healed and drains removed (like 4-5 hrs then finished my day teleworking). I would say it really depends on how your job and work is structured and what your surgeons are ok with you doing while you heal... Sleep is your friend. Let me know if I forgot to address any of your qs. Chemo brain is still in effect and I have a hard time keeping track of things.... MB1
Edited to add - chemo nurses mostly different each time, but I was at 2 different locations. There was some overlap depending on the day of the week I received tx. It was pretty much first come first served. We couldn't 'request' a certain nurse and didn't have a single one tracking our progress through the entire tx process. Hope all this helps! MB1
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They held my chemo again!
All of these starts and stops makes it feel like the chemo that will never end. I'm going to be collecting social security before I manage to get through these last 4 doses. The oncologist said if I'm not back to baseline next week we'll probably just call it quits. I am not on board with that decision at all. I hate having so much uncertainty about what will happen next. I'm a type A kind of person, I need a plan so I can plan.0 -
HazelNut
sorry to hear you're on hold again 😭0 -
Hazel-Nut - I am sorry. My last treatment, they held the carboplatin. At first, we waited a week, and when my platelets almost hadn't budged, I just got the other 3 drugs and no carbo. My doctor told me most people were good by 5 treatments (that was my 6th). If your doctor thinks maybe you'll call it quits, you have to try and take him/her at their word and trust them. Easy for me to say, right? It doesn't make it any easier when things don't go as planned.
I saw the surgeon yesterday. He gave me the choice of lumpectomy or mastectomy. After some discussion, I asked my husband, what do you think I should do, and his answer was do what is best for you. The doctor told me that was the right answer, and went on to tell me how much my husband cares for me, he just wants the best for me, and then I started to cry, because he was right, and I wasn't ready for all of that. We've been together a long time, over 30 years, and he has cleaned my litter boxes since November, I guess I need not go on. We are going to meet with the plastic surgeon at the appointment we have set up for next week, just so we know, if mastectomy is down the road for any reason, what to expect and any choices we have then. Nanette and Maddie, and anyone else here having a mastectomy, I think about you, and the journey you have, and the courage you have. You are the warrior women. Hugs to you.
My oncologist told me we will do Herceptin and/or Perjeta through November, and if there is found to be residual disease after the surgery, we will do Kadcycla. I asked him if this was a chemo drug, and it is. I asked him if I would lose my hair, and he said the majority of women do not. Thank goodness for that, I am hoping it will grow back in! We will be doing radiation after the surgery. I will have endocrine therapy, and I think he has mentioned Arimidex before, that may be wrong, but we didn't talk about that too much. It is good to know where the road may go, but it is good to not get too far down that road, in case things change course. I'll have to have another echo in May, to make sure my heart is doing well with more Herceptin. Doesn't it seem like this just goes on and on and on?
They are having a tea and cookies at the oncology department in April, and the nurse navigator asked me if I was coming. Do you all have nurse navigators? She sat and talked to me after the surgeon yesterday, and was so helpful. She told me, no pink ribbons on the invitation, not one, and she hopes I can come. She asked me to stop in the gift store and get measured for a post-surgical bra, and I will do that next week. I wish all of us could have a tea and cookies party - you ladies, I am so thankful for you. Love and hugs, Lisa
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After being diagnosed with cancer, life quickly begins to revolve around a schedule of treatments, surgeries and appointments. Most people have a basic idea of how long it is going to last, so they fall into a set routine. After everything is said and done, there's an overwhelming excitement to get back to life, but when life isn't defined by appointments, what do you do? Is it even possible to pick up where you left off, before the cancer? Luckily, others have been through this before, so we compiled the knowledge and advice of the IHadCancer.com community to put together these 10 tips that will help you transition back into life after cancer.
1. Be Open With Your Loved Ones: Cancer doesn't end when treatment does, and neither should the support that you receive. Many caregivers and supporters don't realize that you may still need them to check in just as often as when you were going through treatment. Be honest about how you are feeling, and don't be afraid to ask for what you need.
2. Get a New Hobby: There can be a lot of pressure on you to get back to your old self, but for some people, doing the same things as before may now feel foreign. If that happens to you, use this as an opportunity to try something brand new. Always wanted to start knitting, running, or painting? Now is the time. The reality is that you are a new version of yourself, so why not start something that you've always wanted to do, but never tried. This will help you to define this chapter of your life as something more than just "life after cancer."
3. Expect and Accept the Bad Days: Chances are, you will have bad days. You will question why you got cancer or why you survived and others didn't. You'll succumb to the fears and anxieties of the potential for recurrence. But remember that having a bad day and getting emotional does not mean that you are not appreciating your second chance at life, it just means that you are human. Feel what you feel in the moment, and don't let anyone tell you how you should be feeling. Set a plan for what you will do on those bad days — maybe get your favorite meal with your best friend, take a trip to your favorite park, or have your favorite movie on queue. Setting up an emergency "bad day plan" will ensure that you will always have a place to turn.
4. Consider Going Back to Work: If you were working before cancer, returning to work can help restore a sense of normalcy and control that is often lost during treatment. If you don't feel comfortable resuming the position you had before your diagnosis, consider changing your job or talking to your employer about a way to ease into it. Orient your resume by skills and accomplishments rather than dates worked in order to highlight your capabilities and draw attention away from any gaps generated by treatment.
5. Practice Your Elevator Speech: Practicing your "elevator speech" addresses one of the biggest concerns cancer survivors have before making the plunge back into the "normal" world: What do you do when someone asks about your cancer? You just got finished fighting for your life, so how do you sum that up in a couple of sentences to everyone who asks? Write down and practice a five-minute, two-minute, and 30-second explanation about what you want to say when someone asks why you where you've been, or how you are doing, so it no longer becomes a roadblock.
6. Start Exercising (if capable): Exercise is a known way to reduce stress and tension, and it's also another great way to connect with your new normal body. With your doctor's approval, start small with at-home workouts and build your way up to going to the park early in the morning and then the gym, or even to classes that let you work out with a high-energy, supportive group. Note: If you do take the last suggestion, be sure to get to a new class a few minutes early and let the instructor know what's up so they can let you discreetly take a break or leave the class if you're not feeling it.
7. Make A List of Your Fears: It can be hugely beneficial to pen out deeply rooted concerns relating to life after cancer. Some may include struggling with chemo brain, fears of recurrence, feelings of resentment about having to endure cancer, fears of being treated differently once you resume "normal" life, what your sex life is going to look like with mental and physical scarring, etc. Writing your thoughts down can effectively place a check on general anxieties and empower you to plan how to address these issues more effectively, so they don't hold you back from moving on from cancer.
8. Take Control of Your Health: You can't make your hair grow back exactly the same way as before, or put an end to chemo brain, but you can brainstorm about the things in your life that you can control. Be actively involved with your health, make practical changes to your lifestyle — even set a daily schedule to help you get back on track. You know your body better than anybody else, so make sure you stay diligent and make a note of what makes you feel good.
9. Be Willing to Let Go: Some people aren't going to be able to help you transition into your new normal. Here, the key mantra to keep in mind is this: If you can't love me at my worst, you can't have me at my best. Not everyone you care about will be there on the other side when you come out of it, but that's OK. Take it as a lesson learned; appreciate those who stuck around and forget about those who walked away. If it wasn't now, they would've done it at another point.
10. Share Your Experiences: The gift of giving back is one that keeps on giving, long after your treatment is over. Think about yourself on the day of your diagnosis and think about yourself now. You have inevitably learned a lot along the way, whether you realized it or not. You have knowledge that can help someone else, and dispelling that information will allow you to feel as though your cancer experience wasn't for nothing: you are now able to help someone else get through this. Whether online at communities like IHadCancer or offline at local support groups, there are plenty of places where you can go to share your story, and in turn, both get and give support to others like you.0 -
Well damn. Just got the call this morning - we are officially calling it quits on chemo. Honestly ladies, I'm not ready to be done. It feels so anticlimactic. I went through all of this and didn't even get to celebrate the end because I didn't realize the end had even come. I almost feel a little resentful about that, I wanted to have my husband and my best friends come to my last chemo with me and turn it into a big to do and go out for lunch after and really make it special. I'm also not ready to be in surgery in just a few weeks time either. My assistant just quit and now I'm left scrambling. There's no way I can make everything work in the timeline I have to work in.
New York this weekend was wonderful. There's a place off of 5th ave right across from our hotel called Eataly and it was like I had died and gone to heaven. Soooo much good food. I think I ate my weight in cannoli. The best part of the whole weekend was that there were blocks of time where I actually forgot I had cancer. It felt good to be normal for a little bit. I also stumbled off a curb and sprained my ankle because my feet are numb and I couldn't feel what my feet were doing. You take your good with your bad. Since my feet are mostly numb I barely feel the sprain, it's just swollen to the size of a grapefruit.
I meet with the oncologist on Thursday because I told her I wasn't prepared for the end and I don't know what questions to ask because I'm too caught off guard to even be able to think about the next step. What questions do you ask at your final chemo? I don't even know what to do next.
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I'm sorry, Hazel-Nut. It's hard enough when you have to wait a week for treatment, I can't imagine what it's like when it ends and you don't expect it to. But, I am happy it is over for you! I think it is hard work to go through it. I'm sorry you've sprained your ankle. There was a lady here at work that broke something because she got up and her foot was asleep and she fell down. I guess we should be careful when getting out of bed in the morning, the way our feet feel. You know, you could still go out to lunch and have a big to do and celebrate being done! Go by your Cancer Center and ring the bell too.
I had to wait until my platelets were at least 75,000 to have surgery (3 weeks was what they gave me). This website has an article on what to ask the surgeon that can give you some ideas.
I'm glad you had a nice weekend in New York, and were able to enjoy food, and taste it and everything! Get your friends and your hubby and go out and celebrate being through with chemo. And enjoy the little time you have before surgery, to be able to eat, and feel good. Isn't the best part when you can forget you have cancer, even for a moment? I hope you have hair now and nobody would know by your appearance, I am waiting for that day.
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I'm sorry, Hazel-Nut. It's hard enough when you have to wait a week for treatment, I can't imagine what it's like when it ends and you don't expect it to. But, I am happy it is over for you! I think it is hard work to go through it. I'm sorry you've sprained your ankle. There was a lady here at work that broke something because she got up and her foot was asleep and she fell down. I guess we should be careful when getting out of bed in the morning, the way our feet feel. You know, you could still go out to lunch and have a big to do and celebrate being done! Go by your Cancer Center and ring the bell too.
I had to wait until my platelets were at least 75,000 to have surgery (3 weeks was what they gave me). This website has an article on what to ask the surgeon that can give you some ideas.
I'm glad you had a nice weekend in New York, and were able to enjoy food, and taste it and everything! Get your friends and your hubby and go out and celebrate being through with chemo. And enjoy the little time you have before surgery, to be able to eat, and feel good. Isn't the best part when you can forget you have cancer, even for a moment? I hope you have hair now and nobody would know by your appearance, I am waiting for that day.
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Well I started chemo in November 2018. I completed 4 dose dense AC then moved right on to 12 weekly Taxol. Unfortunately I was only able to complete 6 before having to stop because of Pneumonitis. Luckily though after completing AC my 3.2cm tumor could not longer be felt or seen on CT scan (they took one at the ER and compared it to the one in Nov2018) so I'm hoping it killed any of those evil suckers that might have wandered. I'm a little freaked out (ok maybe a lot!) that I was not able to finish my entire chemo plan. I had chemo first so thank goodness I could see that AC worked on that nasty bugger or I'd be really freaking out
I have a DMX with reconstruction scheduled for Wed 4/10. Freaking myself out over that too lol. I am gene mutation neg but I chose DMX because of it being triple negative bc and a strong family history of breast cancer. My plastic surgeon also said that even with a Lumpectomy he would probably be involved because he would have to do some reconstruction on that breast and also the healthy breast to make it match. I would always live in fear of finding a lump in the healthy breast so that decided my course of surgery.
Whew for someone who's most major surgery in the past was toe surgery this is all very overwhelming!
My oncologist had told me that he's been practicing for 30 years and while he's heard of Taxol causing pneumonitis he had never seen a case of it himself. I saw him yesterday and he told me that he had another one right after me! Two back to back. I asked him if they had changed the formula. He said they called the company that makes Taxol and confirmed that there were no changes to the formula and asked them to check the batch. Two cases back to back was just too weird!
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Susan, this article just came through in my email, about triple negative breast cancer. https://www.cnn.com/2019/03/08/health/fda-approves...
I'm sorry you didn't get to finish your chemo, but happy your tumor shrunk so much, yay!! One of the women I work with had a DMX because of a gene running in her mother, Susan. She is doing really well now, she has finished everything. Wishing you a very successful surgery, and best wishes. Hugs, Lisa
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