Starting Chemo in December 2013
Comments
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Forgot about all the sharpie marks from the mapping. The first set of xrays and mapping are the longest that you will have to keep your arms up. I have xray days on Thursdays, so I have to keep my arms up a little longer than the rest of the days. Suggestion, I put my hands in a comfortable position as soon as they go up. Sometimes I forget, you can't move them once you they get everything lined up, then my arm gets a little numb.
Jodi - Nothing like the death of someone you know who has cancer to bring all those angry, scared emotions out. I have been married to my husband for 29 years, so this is what I would say to him. "I plan on living a long life, I am doing everything that I can do to beat this, I love you and the kids, snap out of it, I do not need the stress." Eric, my DH, fishes a lot this time of year. I think that his ability to hang out with his friends, has helped both of us out a lot. Sending a hug your way.
Kim
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Jodi, husbands are a pain sometimes. Can't live with them and can't live without them, right? My husband refused to talk to someone also. a woman I know offered for my husband to call her husband to talk about what going on (she's 5 yrs post) or even for the four of us to just go out sometime (I don't know her husband, and her name was given to me from the breast cancer support group and I've talked to her many times and met at the support gp one time) but he said he wasn't interested. Some men just don't get the benefit of talking about stuff. He says "how will talking about something that is upsetting help, and every situation is different so how would that help". I always feel better after talking about what I'm going through but he doesn't so I guess I just have to let him figure it out and do it his way even if diff from mine (ours). I have found that communication is very difficult lately :-(
Oh and I went to the syracuse RO today and she said that about 30% or her breast cancer pts (L br cancer) would benefit from respiratory gating to put the heart out of the rad beams. There is a very slight chance of future cardiac problems after rad and usually does not show up for 10 yrs or more after. She feels it is more important for a younger BC pt to decrease risks as much as possible (I guess I'm young, 53 um...54...next week). They could do the CT scan and see if resp gating would be of any benefit yo me, ie does my heart move into the rad field when I breathe. If it doesn't then regular rad would be indicated (ie 70% are) and then she was fine with me going local for it but then they would have to do their own scan. I don't know how insurance would handle that.
I cancelled my appointment locally for 5/9 and will go 5/15 to syracuse for mapping etc. I would start last week of May.
Good luck holli, Jodi, robin
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Jodi Good advice from Kim! How often do we end up holding up those around us?? It happens!
Is anyone planning on getting rid of the port as soon as your done with chemo? Mine is very bothersome because it was threaded over and down my jugular. I know some will say best to wait a year or two 'in case'....but there is a big part of me that does NOT want to look back.
Thoughts?
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Sorry, just saw this. I did not wear deodorant.
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lbokland, yup, port is going!, next Monday I'm scheduled to have it out. My doc said she'd keep it a year unless I wanted it out. I want it out. Don't want to think about needing it in case of recurrence. I liked it for the short duration...but not that much! It did its job, now it's time to go. That's my opinion.
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My port was out 10 days after chemo. I couldn't wait to get rid of it!Tomorrow is my last radiation treatment:) -
Jbokland - I got my port out around my first or second week of radiation. I was going to keep it in until plastic surgery, but vanity got the best of me. Summer is coming and I can wear all of my tops without the port showing. At first I was really nervous about having the port removed, thinking about recurrence and the fact that I have tiny veins. However, looking back on it now, it has helped me mentally close the door on chemo. I will say that the nurse had a hard time finding my vein to put my IV in for the port removal. They can always put the port back in if needed. That said, I am not looking forward to having any IV's in the near future.
Kim
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Thanks ladies! Seems like everyone has been down this road:). Kim- that is very good advice:). And DH wouldn't talk to anyone.
So on rads- do you wash with Dove or gentle soap before you go to not smell? This is worrying me lol!!
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Jodi - My rads are at 10:45 am, so I take a shower as usual in the morning. I use dove sensitive. After rads, I put on the aloe gel. Before bed, I put on the aloe and aquaphor. I do wear Tom's deodorant when I need to.
Mikesgirl - Tomorrow is a biggie, this is your last treatment. I am so happy for you. How long do you expect to have to wait before the implants? Any fun plans this summer?
Kim
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KJfromca, thank you. My plastic surgeon said at least 3 months before exchanging the TE for the implant. I have a bunch of plans this summer. The biggest being a trip to Aruba with my husband in August. At the end of June I'm going to Cape Cod with 5 of my high school girlfriends for 3 days. I can't imagine how much we're going to laugh. It should be very therapeutic.
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congrats mikesgirl on being done! Yipee!!! How do you feel? Physically, emotionally? And we are going to cape cod the middle of June. 6/13-6/21 but I'll have to come back early due to rads. Docs said I could have a treatment on fri then take off mon and tues (maybe wed) and get back for wed or thurs treatment. I see you're from Maine. I live upstate ny and it takes about 6 hrs to get to cape (depending on where you stay of course). We stay in denisport, with BIL SIL , niece and her husband and 2 kids and my 2 kids and nephew. We rent a 4 bedrm house. Can't wait to see, hear, feel the ocean! Ahhhh. How'd your skin do with rads. You'll have to be super careful in the sun right?
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I really wish there was a like button!
Mikesgirl, congrats on the end of radiation, haven't started mine yet
My BF hasn't said too much about down the road except after surgery he asked how long I thought I would have had if it wasn't found then. The other night I feel asleep while he was reading and woke up to him lightly stroking my face, so I know he worries, just doesn't vocalize it. I guess it will come out eventually.
I'm in no hurry to get the port out, just feels like another procedure that I can put off for a bit.
Girlfriends, laughter and fun sounds really good.
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Lisaj, I have been pretty depressed lately to tell you the truth. Don't get me wrong, I'm very excited to be done. This is such a crazy roller coaster of emotions. We've been through so much. My husband has been depressed as well which doesn't help. We really don't realize what our spouses go through. We feel that we are going through hell and they should be totally there for us, but they didn't ask for cancer either. I am comforted knowing that I am not alone when I don't understand why my husband isn't there for me emotionally. Physically I feel pretty good. I didn't have fatigue from rads. My skin, on the other hand, is a different story. It's really bad. I don't think this is the norm. I think I'm on the far end of the spectrum. I am very uncomfortable right now. I feel really fat too. I've put on quite a few pounds since this started. Doesn't really help me to feel good. Yes, after rads, we will all have to be very careful in the sun. I have never gone to the Cape before. One of my friends has rich relatives that told her to bring anyone she wanted. It should be a blast!
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get my port out tomorrow, week after chemo done. Today I finally felt better, this last chemo took it's toll on me. I have a consult with lymphodema clinic tomorrow as well, my arms are a bit swollen....arggg.
Also I am just bloated, swollen everywhere, my legs and calves and body just feel heavy, is this chemo? MO didn't want to give me lasix due to potassium stripping, this bloating has me concerned.
Picked up my latisse today, my PS gave me free box...sweet lady, have my perm implants next month, and throwing in my upper bleph, eyelid lift, just for me.
I think once I feel good, and look better all this will hit me....as of now I'm just feeling like I'm still in a whirlwind, and wonder still how this all happened, I'm hoping I don't get PTSD because I still have a hard time believing this is reality...that make sense? My best wishes for everyone!
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mikesgirl, I feel for you, everything you said, I get it. I was wondering about when the depression sets in I totally understand. My husband has been depressed too but won't say so. He has a very stressful job (a plant mgr at a medical manufacturing co)and lots of work responsibilities and takes everything that does and may go wrong at work personally... And then there's me... Bc, surgery, chemo, radiation etc...you all know it. More worry and stress. Sometimes I feel like it's who's holding who up. I think we have learned to be stronger than the men through this, at least in my marriage. And he can just go upstairs and go to sleep when he is stressed?! How can he do that, I don't know!
What are you using for your skin issues? It would be good to know what other docs are using.
And if anyone needs a laugh head over to the insomniac forum. They're nuts there, in an off the wall kind of way. But I don't know what they are talking about but they sure seem have fun together
Good luck everyone. I feel for each and every one of you. Hang in there.
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Mikesgirl, congrats on being to the finish line!
I don't have a partner-divorced after 28 yrs, but my ex has expressed his concern, (or guilt, regret) even though he is re-married. . I find that I feel better when worrying about someone, if I can actually go to appts, ask questions of the Dr, etc. Then, somehow, I feel like I am participating and have more first hand knowledge of what is really going on. That probably isn't possible for most spouse/caregivers bc of work, etc. though. I hope those of you having a hard time can work it out. Maybe there is an online group or forum on FB or ACS for caregivers.... I know it effects us in so many aspects of our lives. At times, I wish I had someone here to worry over me, but then other times, I think it's best to go through it on my own. God's here to take care of me and right now, that's all I need!
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Hi Ladies, So much to catch up on in the week that I haven't been on.
Congratulations to those who are finishing up. Yay! Mikesgirl for being done with rads.
Ornje_mama, good luck with the lumpectomy today!
I had my first appointment with the RO. She said that I may have to do the gating technique since it's my left breast. I'm scheduled to get my mapping on Monday. Insurance company held things up. Arrghhh!
Jodi, sorry that your husband is depressed. I think you should still go to your sisters. It would be nice to get away.
I'm with Keepthefaith, sometimes I'm glad I'm going through alone and sometimes I'm sad that I'm going through this alone.
Lot's has happened the last week. I had the Avon Breast cancer walk last weekend and it was an amazing experience. I was able to walk 7 miles on Saturday and 7 miles on Sunday. My friends pushed me the rest of the way. Stupid Neuropathy, but it is improving, SLOWLY! My speech went great and the crowd cheered. I need to get it off my phone and will figure out how to attach it here or post a link.
Bad news. If you remember I bitched because they told me I was due for a right breast mammogram and I was shocked that it hadn't been looked at. I didn't even realize it because I was in the breast cancer diagnosis fog. Well I had my mammo Friday and there were calcifications. So I had an extremely painful biopsy, laying on my stomach. The biopsy showed atypical cells. So I have to have it removed. I'm so pissed. Why wasn't this looked at closer before chemo and before surgery!!!! Now I have to have a lumpectomy of my right breast. ARRRGHHHHHH!!!! This increases my chances of getting breast cancer in the right breast. So needless to say I'm depressed too! I was so happy to have this almost behind me and smacked down again. Do I have to put radiation on hold now???....sigh
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DJJ, I'm sorry about your right breast. They should have dealt with that sooner. You have every right to be depressed. Jacleak, congrats on getting the port out. That was one of the best feelings for me. Keepthefaith, what a great attitude. When I felt totally alone in this, I knew I wasn't because God was right there with me. Lisaj, 100%aloe, silvadene, and aquaphore for skin. I can't imagine if I didn't get the Silvadene. They will prescribe that when they feel you need it. Have a great day ladies! -
DJJ- I agree! That makes no damn sense!!!! All this time and they couldn't have done at least an ultrasound over there:(. I guess now you just have to do what is needed. Please keep us posted in this and we are all praying for you!
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DJJ, so sorry that you are dealing with the right breast issue now. I would think they would go ahead with the rads anyway. I think there is probably a standard of care that dictates how soon rads should take place after chemo, in order to be most effective. It is good that they found whatever it is now, instead of later; too bad they didn't do that sooner, though. You're right, it is hard to think of your tests, etc when you are in the middle of treatment. You count on your medical team to do that for you.
My BS recommended a 6 month mammo follow up on my BC breast, but 6 months was in the middle of rads. I would've had to delay rads if I had gotten it done at the right time for insurance to pay to it. RO said wait a few months after rads are over...so, I will get both done in Aug/Sept I guess. RO said since my breast tissue will go through changes due to rads, that the mammo won't do much good...hmmm. I trust him, but still worry... I asked him to confirm with BS and he said he would.
oranje, hope your LX goes well! Keep us posted.
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I just finished my last rads. Woooohooooo! It's over:) you will all be done before you know it. Thanks for supporting me through this nightmare:)
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I'm already back home from the lumpectomy & SNB. Lymph nodes were clear! So no axillary dissection. Feeling just a bit sore . . . And happy. One more stage of treatment down
. I had this done at the Johns Hopkins/suburban outpatient center near my home. Wow. Such great nurses & so much better than having to go to the hospital. Feeling fortunate for the great care near me.DJJ, that sucks big time. They are still following calcifications in my left breast on a 6 month interval. So your story could be mine one day. Have you thought about getting a 2nd opinion? I am amazed that you walked 7 miles each day. I'm still struggling with 1+ miles per day! Look forward to hearing your speech.
Mikesgirl, congrats. Wow. So awesome. I hear Aruba is really nice.
My DH shuts down too, although his dad has been great in talking him through this. My FIL is a retired pastor. DH hated that growing up, is totally non- religious now, but I think can appreciate his dad's counseling skills now. I haven't always seen eye to eye with my FIL but must admit he's been great through this.
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Mikesgirl-So happy for you!!! That is great, you are done with another step
Your trips sound awesome too. Orange-Do they let you know your nodes are clear at time of surgery? I have my surgery next week so was wondering.
Having my surgery may 15...scared sh**less to be honest! very anxious and nervous. Having masectomy on left with TE placement, lumpectomy on right with TE placement for symmetry. Saw PS for pre op today. Next week have all kinds of appointments. I think that is what I hate about this cancer the most. It is such a long process-did chemo for 5 months, now the surgery, then still have to do rads and reconstruction....you ladies are my heros. I am trying not to get overwhelmed and just take it a step at a time. It is hard not to be depressed so I understand everyones feeling on that. I am going to the beach this weekend with hubby-my last weekend with my girls still in tact
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mikesgirl- congrats! What is your next step now?
Orange- glad you are feeling ok.
I've got 6 more days until last chemo. Ready ready ready ready! I am being very very impatient lol!
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Mikesgirl, CONGRATULATIONS!!!!!!!!!
It excites me to no end to read the stories of each and every one of us getting closer to the end of this nightmare we have been living the past months. I've been in a contemplating mood lately, pondering the why's and the what if's.....not finding any answers so decided to just stop worrying and wondering and just start living again. I feel like i've been locked in a cave all winter long......like I was a bear hibernating and life just passed me by since October. But then I think.....life wasn't passing me by, I was passing through life each day just learning how to survive this mess. God only knows, it wasn't easy, was it? I am so proud of all of us......What an amazing bunch of women. Strong. Determined. Fighters. Survivors.
I had so much anger inside me at first diagnosis......i never let it out, but I was pissed at everybody and everything, especially God! I always had this crazy idea in my head that since He took my Dad from me when my dad was only 39 of brain cancer, then my mom got Acute Myelogenous Leukemia at age 49 that maybe.....just maybe, He would spare my family from ever having to deal with cancer again......isn't that crazy? I've stopped blaming Him......still a little ticked off, but it is what it is!! My quiet faith has carried me through this and I know deep down everything is going to be ok.....but still........damn.....cancer really just pisses me off!
Ok.....I am done with my rambling thoughts......the sun is shining! Life is good!
Michelle
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mikesgirl, congratulations! Happy dance time! Are you like done, done? Aruba is absolutely beautiful.
Jodi, soon, soon soon! You're ready, go get 'em girl!
Oranje, great about getting surgery behind you and negative LN. So rads for you now?
DJJ, walking 7 miles that's great! That's soooo stressful to say the least. You'll make it through this next phase.
Missy, I like your mind set. Thanks for the insight. It helps to hear how others are dealing with this whole mess. We ARE awesome women!
Yup sunny here too! Happy spring finally
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Thanks ladies. The only thing I have left is to have the TE replaced with permenant implants.
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So glad to hear everyone's good news!
missy, your post brought tears to my eyes. Well said.
I am a bit weepy today, for no apparent reason. That person that had scans, tests, surgery and chemo is gone and I can't find myself right now! Go figure. I have so many positive things going on and have nothing to whine about. I guess it's part of this *&^% process...I know I'll get through it, but I want to move on already! It's been a hard lesson for me to focus on myself and my recovery since it's always been about my kids and family. I guess I am a work in progress! Can I skip this step?
I honestly don't know how I would've gotten this far without you wonderful women here!
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Ladies, Here's a link to my closing ceremony speech for the Avon Breast Cancer Walk.
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congrats mikesgirl!!
Jodi - the end of chemo will be here before you know it. I know how those last few days before the last one seem like they are the longest days ever.
DJJ- so very sorry dear. That sucks.
Oranje- how are you feeling?
Vettegirl - have fun at the beach. Yes... This is a long process. I was so naive in the beginning. Cancer is a full time job it seems.
Missy- love the avatar! You are so good with words. I'm curious - are you a writer?
Keepthefaith- sorry you have had a weepy day. I'm sure it's normal but that doesn't necessarily make it any easier.
I was weepy yesterday. Went to PS that morning to follow up prior to rads. Got to take topless pictures. Woo-hoo (heavy sarcasm on that woo-hoo). I had an open spot on my flap incision line. Apparently it was a stich that didn't dissolve. So PS dug it out. Thank goodness I don't have any feeling. Then had mapping at RO that afternoon. RO says that the open spot on flap needs to heal before starting rads. So I'm praying it will be healed before Wednesday next week wheny SIM is scheduled.
I was so tired after all that. Then we found out some more junk about out insurance problems. I've cried all day today. It's enough to fight cancer but to have to deal with insurance too. It's too much. I'm fortunate my DH has dealt with mist of it.
My MO called. Apparently try #3 at BRCA is a no go as well. The nurse said that My Obama care plan will cover BRCA for preventative reasons but not if you already have a cancer diagnosis. What?! That doesn't make sense to me.
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