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Jenny in Florida

Sorry to keep bugging everyone, but . . . Breast cancer treatment?

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I’m sorry you didn’t get better news. My thoughts are with you and your family.

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Other things I had felt useful post-op was

1) Capri leggings with side pockets. The side pockets were useful for putting the post-op drain bottle as the lower the bottle was, the less air bubbles in the tubing.  The side pockets on my leggings are big enough to stuff either a cellphone or a small wallet (bifold size).

e.g. https://athleta.gap.com/browse/product.do?pid=209918002

2) having a small crossbody bag with me to put my cellphone. I left my phone at the restroom a few times at department stores (ETA: when I didn’t have a bag with me) and luckily got the phone back. However I do need my cellphone in case I need help, worse case I could message my husband and he can request a lady staff to assist me. 

Link is what I have as that’s the smallest I could find that could hold my phone, wallet, my asthma inhaler and my mobile hotspot if I need all those items. I have a smaller crossbody bag that could hold only my phone and a credit card (no space for wallet). https://www.amazon.com/FRYE-Leather-Zip-Camera-Crossbody/dp/B07CVRVTFL

Edited by Arcadia
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So, here's the update:

I'm scheduled for a bilateral mastectomy tomorrow. I wrestled with the question of whether to stick with unilateral or go ahead and remove the second breast. 

And I still would not say I have any real peace with the decision, but it seems to be what makes the most sense. Only after I shared my choice with friends and family did a few of them speak up and say they think I am doing the right thing. 

Managing all of this alongside work has continued to be exhausting and stressful, even though my employer has been great. These last two weeks, especially, I have been out of the office as much as or more than I have been there. It is almost a relief now that surgery is tomorrow to know that I have the next three or four weeks to focus only on treatment and recovery.

I am, to be honest, terrified. I absolutely hate going under anesthesia. I had managed to avoid ever going under the general type until I was almost 50, and, even though I've had two operations since then, I still don't really believe I will wake up after. Add to that the fact that this is the first time I will have a major procedure  that I know I won't feel "better" on the other side of, and I feel pretty bleak whenever I let myself think about it much. 

[On not feeling "better": The other two times I have had surgery have been to remove my gallbladder and my thyroid. In both cases, I was experiencing pain or other symptoms that I knew would be relived by the procedure. This time, the cancer is causing me no symptoms, and when I come out the other side of this, I will have pain or discomfort I do not have now and my physical appearance will be permanently altered for the worse. And, yes, I do know that choosing not to have the surgery means I would likely die earlier, which is why I am not choosing that path. Right now, today, though, eventual death from untreated cancer feels like a distant possibility compared to the certain knowledge that, assuming I do wake up from the anesthesia tomorrow evening, I will be doing so without breasts and with pain I didn't have that morning.]

So, I know (or at least am trying to make myself believe) that it will be okay. I will recover, achieve and adjust to some kind of new normal. But right now, today, it just sucks.

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Sending good vibes and calming thoughts to you, Jenny. I totally understand how you feel about ‘not feeling better’ after the surgery and worrying about anesthesia. But once the cancer is out, I bet you will mentally feel a little better.  But I’m not sure anyone ever feels ‘done’ with cancer. 

‘Hope it goes smoothly. 

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Hugs. I am so sorry. 

It is good you are acknowledging the loss of you body and the significant impact it will have on you instead of blindly smiling and saying, "Oh it will be fine they're just boobs. I'm a warrior!" Those patients always made me very concerned.  I know that sounds weird maybe for me to say, but my last job before retiring to be sahm was as director of an oncogenomics department in the major cancer center here fwiw,  so I've seen more of this than I could tell. And well, the people who went in *rah rah* to a procedure such as yours with no sense of loss at the beginning trying to be super positive in huge smiles and being the rock for their family  (I think there was denial there on what their appearance means to them- and well, to anyone) were blindsided much worse on the backend after the surgery and really ended up struggling in many cases. So I think at least acknowledging that upfront and most importantly, out loud to your family and friends surrounding you before your surgery, will actually put you in a better mental spot afterward, as you navigate the recovery and treatment to follow, because you are already admitting that sense of fear and loss and therefore will hopefully handle it in a more straightforward fashion to get the support you need in the following weeks. 

And you do need and deserve support. So often people and patients alike treat it on the surface like "just" another surgery like removing an internal tumor or something, but it isn't. The desire to live up to this whole "warrior" image that I honestly hate, that society has produced because it then introduces perceptions of winner and losers, I think has made women and men feel this need to put on a stoicism and brave face that isn't fair to expect of any patient facing a life altering surgery. And that leaves family and friends often unsure of how to address the procedure. Do we encourage? Do we show we are sad? Do we minimize it? So in one way, this whole focus on cancer and survivors and "fighters" I think has caused even more complications for the patients and families actually going through the removal of what are very key body parts that do actually affect lifestyle and continuing parts of what it is to be a person. And those things are what really need to be talked about the most. (And I'm not rejecting the importance of a positive attitude but that's another story and for a different immediate situation.) 

I encourage you to take advantage of the mental support offered by your hospital post surgery if at all possible- hopefully the offer some one on one support and not simply group therapy/support..Surgeons are tacticians and that is about it past the procedure and making sure the healing is enough for the next stage. But you need people who understand all of the changes that will come to your life with the loss of your breasts. 

Again, I am sorry for what you are going through. I think it is among the most difficult things a woman can face. I hope you don't mind what I just posted and that is doesn't cause you more distress. I just wanted to let you know that it's beyond normal for what you are feeling right now. If you weren't feeling that, then that would be the concern. Hugs. 

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Sending good thoughts your way for the surgery and recovery. I hope everything goes smoothly.

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Sending hugs and prayers for tomorrow’s surgery.  I want to add I totally understand the feelings you expressed.  

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Yes, it does suck and I'm so sorry you have to go through this.  Thinking of you and hoping the surgery and recovery go well.  

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Jenny, I haven't been on here in months, and i'm so glad I popped in just now.  I will hold you close in my prayers tomorrow and over the next few weeks, and i'll check back in here to see hwo you're doing.   

I'm glad you decided on a bilateral surgery. Under the circumstances, that will give you some peace of mind.    

Know that you are loved, appreciated, and cared for.  

Valerie, also a BC survivor, with my 5 year marker this month.  :-) 

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I will be thinking of you tommorow, Jenny. 

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3 hours ago, Æthelthryth the Texan said:

Hugs. I am so sorry. 

It is good you are acknowledging the loss of you body and the significant impact it will have on you instead of blindly smiling and saying, "Oh it will be fine they're just boobs. I'm a warrior!" Those patients always made me very concerned.  I know that sounds weird maybe for me to say, but my last job before retiring to be sahm was as director of an oncogenomics department in the major cancer center here fwiw,  so I've seen more of this than I could tell. And well, the people who went in *rah rah* to a procedure such as yours with no sense of loss at the beginning trying to be super positive in huge smiles and being the rock for their family  (I think there was denial there on what their appearance means to them- and well, to anyone) were blindsided much worse on the backend after the surgery and really ended up struggling in many cases. So I think at least acknowledging that upfront and most importantly, out loud to your family and friends surrounding you before your surgery, will actually put you in a better mental spot afterward, as you navigate the recovery and treatment to follow, because you are already admitting that sense of fear and loss and therefore will hopefully handle it in a more straightforward fashion to get the support you need in the following weeks. 

And you do need and deserve support. So often people and patients alike treat it on the surface like "just" another surgery like removing an internal tumor or something, but it isn't. The desire to live up to this whole "warrior" image that I honestly hate, that society has produced because it then introduces perceptions of winner and losers, I think has made women and men feel this need to put on a stoicism and brave face that isn't fair to expect of any patient facing a life altering surgery. And that leaves family and friends often unsure of how to address the procedure. Do we encourage? Do we show we are sad? Do we minimize it? So in one way, this whole focus on cancer and survivors and "fighters" I think has caused even more complications for the patients and families actually going through the removal of what are very key body parts that do actually affect lifestyle and continuing parts of what it is to be a person. And those things are what really need to be talked about the most. (And I'm not rejecting the importance of a positive attitude but that's another story and for a different immediate situation.) 

I encourage you to take advantage of the mental support offered by your hospital post surgery if at all possible- hopefully the offer some one on one support and not simply group therapy/support..Surgeons are tacticians and that is about it past the procedure and making sure the healing is enough for the next stage. But you need people who understand all of the changes that will come to your life with the loss of your breasts. 

Again, I am sorry for what you are going through. I think it is among the most difficult things a woman can face. I hope you don't mind what I just posted and that is doesn't cause you more distress. I just wanted to let you know that it's beyond normal for what you are feeling right now. If you weren't feeling that, then that would be the concern. Hugs. 

Such an excellent post.  So sorry Jenny about what you have to go though.  But happy you have the chance to live more years.  Update us when you can.  (((Hugs)))

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((((Hugs)))) Jenny, I can't begin to imagine your emotions today. I'll be thinking of you tomorrow!

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Oh, Jenny! I'm so sorry you have to make these decisions, and face this. It sucks. You are facing crappy choices, and I'm not surprised none of the options feel good. Mainly as there are no good options, just less crappy ones. 

Also, DO let your anesthesiologist and anyone/everyone at the hospital know your fears. They can give you a pre-op medication earlier rather than later to help you feel a bit less scared. You're going to get meds anyway, might as well have them early enough to ease your mental distress. And stay on top of the pain in the recovery phase - there are no medals for using less meds and often using them hard and often early on and staying ahead of it means you are off them sooner - something about nerve cells once activated tend to take longer to calm down. They won't give you more than is safe, so ask for what you need, and if that makes you feel crummy or have side effects ask for something else or something to help with the side effects. 

And again, I'm sorry. We love you, and will all be thinking of you tomorrow, and will mourn your loss of the body you've known with you. Feel free to vent here as you go through this. We've got your back. 

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21 minutes ago, Ktgrok said:

Oh, Jenny! I'm so sorry you have to make these decisions, and face this. It sucks. You are facing crappy choices, and I'm not surprised none of the options feel good. Mainly as there are no good options, just less crappy ones. 

Also, DO let your anesthesiologist and anyone/everyone at the hospital know your fears. They can give you a pre-op medication earlier rather than later to help you feel a bit less scared. You're going to get meds anyway, might as well have them early enough to ease your mental distress. And stay on top of the pain in the recovery phase - there are no medals for using less meds and often using them hard and often early on and staying ahead of it means you are off them sooner - something about nerve cells once activated tend to take longer to calm down. They won't give you more than is safe, so ask for what you need, and if that makes you feel crummy or have side effects ask for something else or something to help with the side effects. 

And again, I'm sorry. We love you, and will all be thinking of you tomorrow, and will mourn your loss of the body you've known with you. Feel free to vent here as you go through this. We've got your back. 

This. I remember they tried to do that for me before my second operation at 7 and it made me super hyper instead but did relieve my fears a lot,  So everyone has different pain levels, anxiety levels, etc and there is no one way to medically treat everyone.  So tell them if you are fearful, in pain, depressed, whatever,  

I think you are doing the right thing with the double mastectomy but your loss will be real.  I will be praying for you tomorrow and as I remember in the coming weeks for your recovery in every way, not just physically (my loss is part of my brain-  though no one cut that out).  

Hugs, hugs and more hugs.   

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Jenny, I will hold you in my thoughts and prayers tomorrow. Thank you for keeping us in the loop on your treatment. You're certainly not obligated to you, but I feel honored that you do.

Your WTM sisters are here for you!

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I will be thinking of you and praying for you tomorrow. I’m sorry you are going through this. ❤️

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9 hours ago, Jenny in Florida said:

This time, the cancer is causing me no symptoms, and when I come out the other side of this, I will have pain or discomfort I do not have now and my physical appearance will be permanently altered for the worse.


While my surgery was definitely less invasive, I felt similar about chemotherapy. I am waiting for blood tests results for four autoimmune tests that I did on Wednesday  (1 out of 5 tests results was ready the next day) because of joint pains and my molar chipped badly on Friday night so I would have a RCT done tomorrow.

The only advice I could give is voice your anxiety when you check in for your surgery. My anesthesiologist talked to me for 30mins after the nurse took my vitals and set up the drip. That was about 3hrs prior to surgery.  
Also, do not be afraid to sound like a hypochondriac. Let your medical care team know of any discomfort or side effects that you are not sure of. While the standin oncologist (while my oncologist was on leave) thought joint pains are a normal side effect, my oncologist would rather run the autoimmune blood tests as I had prior history of being evaluated for juvenile rheumatoid arthritis. I felt bad originally about “whining” over every side effect I have from the surgery and treatments but the medical staff reminded me that they need to know even if the pain level is only 2 out of 10. They need to know if I have bearable pain or no pain. So don’t feel bad “complaining” about any pain or other side effects like neuropathy. 
Feel free to vent.

Hugs.

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On 9/29/2019 at 1:41 PM, Æthelthryth the Texan said:

Again, I am sorry for what you are going through. I think it is among the most difficult things a woman can face. I hope you don't mind what I just posted and that is doesn't cause you more distress. I just wanted to let you know that it's beyond normal for what you are feeling right now. If you weren't feeling that, then that would be the concern. Hugs. 

 

Honestly, this was extremely helpful. It made me cry, but in a good, cathartic way. So, thank you.

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So, I woke up.

They apparently did remove some number of lymph nodes on the side with the cancer. So, we're waiting for the pathology report to know where we go from here, but we are now down to a "small chance" I will not need chemotherapy.

But I'm here. I'm sore and tired and feeling pretty sorry for myself, but I'm here.

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7 minutes ago, Jenny in Florida said:

 

Honestly, this was extremely helpful. It made me cry, but in a good, cathartic way. So, thank you.

How are you doing? I’ve been thinking about you the past few days and hoping everything went as smoothly as possible!

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My lymph node pathology report took about 10 days to be released to my oncology surgeon. All the best and concentrate on recovering. Let everyone else help you.  Sleep as much as you need to. 

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4 minutes ago, Arcadia said:

My lymph node pathology report took about 10 days to be released to my oncology surgeon. All the best and concentrate on recovering. Let everyone else help you.  Sleep as much as you need to. 

 

I've been told the report should be ready in about four days, in time for my follow-up with the surgeon on Monday. (Actually, my nurse navigator called today to check in and said she would call me as soon as she gets the alert that the pathology report is ready. She said she won't be able to give me a lot of detail, but she can at least give me a heads up about the results in general terms.)

I am trying to be good about focusing on recovery. So far today, my big accomplishments have been taking a shower, refilling the bird feeders and taking two naps.

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I've been thinking of you too. If there is anything I can do locally, let me know!

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14 hours ago, Arctic Mama said:

How are you doing? I’ve been thinking about you the past few days and hoping everything went as smoothly as possible!

 

To be honest, I'm tired and sore, but trying to focus on feeling better. My husband has been really sweet about making time every morning to take the dog and me for a short walk before he leaves for work. Friends and family have been checking in via phone and text. Other than that and some light household stuff, I've been sleeping and binge re-watching 30 Rock. I'm bored and cranky but don't feel up to doing anything more.

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I think being tired and sore is so par for the course. After my mother’s last surgery she was surprised not at how long she felt sore and how annoying the drains and such were, but how quickly she got achy and fatigued as she tried to do more.  She felt better but ran out of gas or really made herself ache more quickly than she expected, and for many weeks longer than she expected.

Recovery is boring and slow, it’s so true!! Just resist the urge to do things.  You’re on the right track with thirty rock and loafing around the house answering texts, even if it is driving you crazy 😉

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I unintentionally over exerted myself before surgery and hurt my muscles and joints. That’s why I say to do nothing but rest and recuperate for the next few weeks.

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I am glad that your surgery is behind you now. WIshing you a speedy recovery.

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Bumping because thinking of you and hoping your recovery is smooth and you have a wonderful weekend.

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40 minutes ago, Arcadia said:

Bumping because thinking of you and hoping your recovery is smooth and you have a wonderful weekend.

 

Thanks for thinking of me.

I realized I haven't updated since my follow-up on Monday. My daughter popped into town to see me for a couple of days, and I allowed myself a full day after she left to wallow and rest and recover. 

We did get the pathology report on Monday, however, and it wasn't great news. Three of the six lymph nodes they removed did show signs of cancer. So now it's on to the medical oncologist on Wednesday to see whether he thinks chemotherapy is appropriate. 

Other than that, I'm feeling pretty okay. I actually managed a half-day at a theme park while my daughter was here -- moving slowly and selecting rides very carefully and allowing myself the aforementioned day after to rest and recover. But I feel well enough (and bored enough) to be considering going back to work a week earlier than planned. At this point, I've decided to put off a decision about that until after I see the medical oncologist on Wednesday and do my second follow-up with the surgeon on Thursday (when I am hoping they will be able to remove the drains). 

I hope you are recovering and feeling well, too!

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Sorry to hear all of the lymph nodes weren’t clear. I hope you get a good plan of action on Wednesday and drains removed Thursday. I’m so glad you were able to enjoy a visit with your daughter. Take care.

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