Hi Cathy! First, the emotions that you are experiencing right now are very NORMAL. We have all felt the very same way that you are feeling. I was 51 when I was first diagnosed and had a modified radical mastectomy. I had 21 lymph nodes removed, 19 positive. I had no desire to have reconstruction either. In fact, I am very sorry that I wasn't thinking clearly enough to tell my surgeon to remove both breasts.
I came home from the hospital (after 24 hrs) w/ the drains. I was able to have them removed when the fluid that drained was clear. I think it was about 5 days. There are different types of shirts that you can purchase that have little pockets in them to hold the drains. My oldest dd and granddaughters and I lived together and I have to admit that I was glad there was someone home to help me the first week or so. I found that sleeping in bed for the first couple of days was impossible. To difficult to get comfortable and up and down. I slept in my recliner, w/ pillows behind my shoulder for support. I wasn't allowed to drive for about 2 weeks. My surgeon wanted plenty of time for healing. As for the pain, most of my pain was right after surgery. They gave me pain shots that took care of that problem. Once home, I would take tylenol 3 or ibuprofin 800 if I was hurting. You need to realize that there will be some things that you just can't do by yourself. Drying your hair. You can't pick up anything heavier than 5 lbs for awhile. But, it is doable. I would suggest that you set your pride aside (difficult for us women to do) and ask your close friends to stay w/ you for a few days after your surgery. Someone that you are very comfortable being around. Let them take care of you until you are feeling good again.
I also had 4 a/c, 12 taxol and 36 radiation. I wasn't able to drive myself home after the a/c. The premeds they gave me made me sleepy. The side effects from the a/c weren't bad. I never threw up. Wasn't constipated (just the opposite). I was tired for a couple of days after treatment. Usually didn't sleep the first 24 hrs because of the steriod premed. But, after 3-4 days, other than being tired, felt pretty good. And it seemed that I felt the same after each of the a/c.
I believe that you can do anything that you set your mind to but you have to remember that your body is putting up a big battle to beat the cancer. Listen to it. When you feel tired, rest. If you need to cry, then cry. Just be aware of what your body is trying to tell you.
Hang in there. We will be here for you.
Okay, I am better tonight, but still having trouble sleeping. I did CPR recertification this morning and had lunch with another faculty member at the college here. She is one of my best friends and is planning on taking me to the hospital and bringing me home and spending at least the first night with me. She started crying at lunch and I couldn't console her. She works in the recovery room where I will have surgery. We have been buds for a long time. My boss at the college said to remember that the "whole nursing faculty" is part of my family and that I should let them know if I need anything. Another friend is planning on doing a "smudging ceremony" with a Sioux Medicine Woman during my surgery time. They won't actually be here. I am still working on what to do with Sheila (dog) for a week. She a handfull and I really don't want drains with her playfullness. Worst case she stays at the vet for a week.
I think I will want reconstruction and have pretty much decided on bilateral mastectomy. To get better boobs, I would probably have to have an implant in the remaining breast and I won't do that with a possibility of this cancer there....seems like implant and B/C that is this hard to find are a bad combination.
If surgery is next Friday it will be Labor Day Weekend. The school will be out on Monday and my boss is getting someone else to cover for me in student clinicals on Tuesday. That gives me 9 days to get rid of the drains. I have easy clinicals this semester: I take the students to the old folks home and to the state mental hospital: nothing that requires me being in the hospital setting with all the germs. All I have to be able to do is drive there, stand on my own two feet, answer the student's questions and grade papers. I usually rotate students through ICU, ER and medical surgical or trauma stepdown.
I discovered a couple of good things today: not only did I take out disability insurance on the new car, I have it on most of my accounts!!!! With this and what little I will make at the school, I should be okay, financially.
I had my hair cut real short as soon as I found the lump and altered nipple. I KNEW what was going on. It is so short it doesn't hardly move at all, even in these Oklahoma winds!! It is already baby fine and thin due to hypothyroidism. Maybe it will grow back thick and curly!! I'll have to get a wig just so I don't freak out the old folks and psychiatric patients by showing up bald. I barely have eyebrows now: fair haired Irish. LOL trying to imagine myself bald, no eyebrows or eyelashes. Do you lose weight with chemo? I have been on thyroid for a year, but still have 20 pounds to get back to my ideal 120 lbs.
I guess I am not too concerned with pain. I've had knee surgery and rehabed the knee twice, now that HURT!! My biggest concern is giving over enough control to let the anesthesiologist put me under for the surgery. I also have fibromyalgia, so PAIN is almost my middle name. Though it is much better now that I am on thyroid meds.
Thank you all for all your input. I am so glad you are all willing to share. Do you know if insurance will pay to have the other breast removed if I do it at the same time, B/C there or not?
Cathy in OKC
Maybe I am being too over cautious. But I am self supporting and have a lot of things I want to DO. Going through this ONCE is more than enough for me. My thought process here is that if I only have one breast removed (results of MRI still not back from last Thursday may have B/C in both) then to reconstruct one would most likely not work as I want to get a little "more" than I was given to start with. I cannot even imagine doing this with the left breast intact, with implant, due to the difficulty of diagnosing lobular with no "enhancement". I am not likeing the statistics I see for recurrence of lobular and I don't have enough original breast to get a good result with lumpectomy. I really don't want to go through chemo twice: once to reduce the size of the tumor and another after the tumor is removed and still have the high risk of recurrence.
I have considered bilateral mastectomy and no reconstruction. I imagine that anyone getting close enough to me to see me naked, would be able to deal with the scars. I think by the age of 52 most of us have a few scars. This is just a lot more dramatic than a gall bladder scar or hysterectomy scar.
To tell you the truth, I just want this part of my life to be over and done with so I can get on with my "hopes, dreams and goals". I want the best cure rate, lowest recurrence rate and bilateral mastectomy seems to be the way to go, for me. My ego, self confidence has never been linked to my breasts, probably because I never had that much to begin with. Until I found out it was cancer, I thought my boobs were finally starting to grow. Should have known it was too good to be true.
Just a note of encouragment for life after a lobular diagnosis. I'm still here after 5 years and I had a bad-boy cancer. I too had a 2.5cm tumor that they found only with ultrasound (I'd been having yearly mammos with nothing spotted on them) HOWEVER, when I had my bilateral masts, 3 tumors were found in my left breast and hyperplasia was in my right breast. So, it was probably only a matter of time for the right one to develop bc. Bilateral was a good choice for me.
My lymph nodes were 10 positive and one of them was larger than my largest tumor and protruding into the surrounding fat. I also had a mammary node involved. I feel it really is a miracle I am here and have no regrets about the aggressive approach taken. Like you, I have lots to live for.
I do regret making a personal choice for the bilateral trams with implants. This choice was made when they told me the surgery would probably take care of all the cancer and I wouldn't have to have radiation.....wrong! I had very aggressive radiation and it did a number on my skin and implant on that side. It was a long road of multiple surgeries to remove incapsulations and finally I lost the implant and struggled with a MRSA infection (being an RN you know about those) and ended up doing lots of hyperbaric oxygen treatments to get rid of it, and grow some skin over my exposed rib bone. No fun.
I do not share this to freak you out, but I hear in your post "wanting to get on with life" and not be out of commission too much. So, there is nothing wrong with delaying reconstruction and taking your time to make that choice after recovering from the masts. I still have the tram and implant on my right and wear a prosthesis on the left. Now I've experienced a little of each option and I wish I had not picked the tram/implant combo in my original surgery.
Everyone's experience is so very different, but I know how helpful it can be to read a variety when you are choosing for yourself.
Blessings on this road. Life is good despite the bc potholes ~ Joany