May 2016 Surgeries

So according to the ultrasound of my legs, I do not have a blood clot. It's a relief but I still did not get a good explanation for why one leg would be swollen. The doctor just said "These things happen" (!) The discharge nurse suggested that removing 2 lymph nodes from my right arm pit might cause my left ankle to swell, but I'm not buying that.

Natty - LOL about ordering a pony I had jet lag a few years ago after traveling home from New Zealand and somehow accidentally bought a couple of glow fish and a fish tank from Walmart.....

Mom4four - I'm glad you are doing well and gaining some strength back. I think those "weepy" moments are part of the territory. Women with breast cancer often have PTSD, so be kind to yourself - it may take a while to feel normal again.

WifeMomTeacher - I know how you feel. I insisted on a CT for my ongoing abdominal pain and then had a bone scan for rib pain. Both came out clean but I'd like to have a PET scan as well just to be sure.

Meanwhile, Thing1 and Thing2 are continuing to drain about 35-45 cc's a day. My postop appointment is on Friday so I'm trying to use T-Rex arms as much as possible to bring the total down to the required 20 cc's each. My nipple is purple but I think it's hanging in there. I'm keeping warm -don't know if that helps but I think warmth may promote better blood flow to the skin.

Have a happy Sunday, everyone.

Hi Ladies

Grandma3x, so glad it's not a blood clot. Don't blame you for not buying the lymph nodes caused swelling. Um, nope.

NattyB, great news, sorry for the long surgery, yikes

Mom4four and WifeMomTeacher, I don't blame you My pet scan and ct scan gave me at least the peace of mind, for the present it's not somewhere else. but then it was no argument as I am a stage III

This too is my second go round with bc though the first one was 24 years ago. Early stage (not much emphasis put on staging, types etc back then) I actually think mentally I fared better because I had no idea about the statistics etc, now you have so much information and it in my opinion sometimes makes things worse.

My cancer center gives you a complimentary mastectomy camisole. My daughter is picking mine up while in hospital and you also get one while in the hospital recovering.

@Mom4Four - I'm two weeks out now and I am oscillating between fine, pain, pain, pain, fine, look I got something accomplished good for me! tears this sucks this hurts pain fine fine tears fine progress happy tears fine pain frustration ooo progress! setback tears fine......

My emotions are all over the place. I'm grateful for the last few days which I've spent alone - it's let me just cry when I cry, and feel cruddy when I feel cruddy, and do stuff when I can do stuff, and rest when I need it. It's a lot to process for anyone, and compounded further with those of us who get re-hospitalized and, like in my case, scared with stroke symptoms and left with nerve damage and cognitive stuff that just needs time to work itself out.

I mean, this is no picnic even if everything goes fantastic. All the stress beforehand, all the physical stress on your body during - it all adds up and it's got to come out sometime.

Upbeat insistence of the day: All forward motion counts, even baby steps. So give yourself time.

If I had a dollar for every time my main nurse contact said "This is a PROCESS" I'd be able to pay the hospital in cash.

Papillon1, We have similar histories. I lost my mother, her mother and aunt to breast cancer, plus my father to pancreatic, two of his sisters to breast, two to ovarian, two paternal cousins have breast now, and two paternal great aunts to mystery cancers that had mets to the liver. I feel doomed.

But I have found that all women I have mentioned my pbmx to have said, "Good for you!"

@Papilon1 & Momof6 - I envy your support.

When I called my mother after surgery to tell her I'd made it out of recovery to my room, she said "Well now you're mutilated."

I started crying, told her that was a fine thing to say to someone who just got out of surgery, and I had to hang up. My surgeon just shook his head.

Oh GreyKat, I'm so sorry that is what your mother said. I have found that some family members have been frightened by my choice and by all of the digging I have done into our family's history of cancer. It scares them because it's their history too. Mostly it's my sister and two of my aunts who are not responding well. But friends and other family members have been supportive. So I guess it balances it out.

Have you read the book, Cancer in the Family by Dr. Theo Ross? It really helped me put some of the reactions into perspective and to help me feel support for this decision. I actually emailed Dr. Ross and she responded. She's very helpful.

You have made a brave choice. The hereditary risk cannot be undone. When you see the ravages of cancer across the generations, know you did a wise thing.

Hey, all. I know I have tons of your posts to catch up on and I will, but I just got home from the hospital a little while ago and wanted to share my experience as a warning.

Flotsam was removed Thursday afternoon about 4:00 p.m. By the middle of the night I was in so much pain I could hardly stand it, yet oddly enough there was no swelling or redness. I put a call into my PS office right away but because I wasn't reporting any swelling or redness they didn't seem too concerned. I checked the breast at 2:00 p.m. and it all still appeared normal, just extremely painful. Then at 4:00 p.m. I checked again and the only thing I can say to describe the changes is "holy shit". I immediately took a picture and e-mailed it to the PS and he told me to meet him in the ER. I met him there, then they did an immediate operation to drain the fluid, flush/clean everything out, and insert Flotsam 2.0. I was told at first that I would be in the hospital at least overnight for IV antibiotics, but my RN in the morning was the first person to spill the beans that, usually, for something like this I could expect to be there for three days! The resident working the week-end said I would probably be there until Monday, but not to hold it against him if it turned out to be Tuesday. Well, evidently I must have responded well to the antibiotics, because they sent me home today – Sunday – on oral antibiotics and I follow-up with the PS on Thursday.

For anyone who is dealing with the discomfort of the drains, I hope my experience will help guide you. My left drain came out after 26 days, at the time of my nipple cleanup/excision. The output at the time was about 20 ccs in 24 hours. At that time they inserted a new drain on the right side. I had that an additional 8 days, until my next follow-up with the PS. The output at that time was also about 20 ccs in 24 hours so the PS pulled the drain. Within hours was when the fluid started building up. Why it happened on the right side at the same volume and not the left I'm sure we'll never know, although the right side is the one that had the previous lumpectomies/radiation. After an additional 2 days with the new drain I'm currently at 88 ccs for the day and I still have to empty it one more time tonight to get the total volume. I anticipate having this new drain for as long as it takes, because I'll tell you right now, the pain from the seroma was horrendous. I have a pretty high tolerance for pain but at one point I told my DH that I'd rather lose the breast completely than have to deal with that level of pain anymore.

So even though you may be uncomfortable with the drains, trust me when I tell you that the drains are a walk in the park compared to the seroma. Be honest about your output and put up with them for as long as it takes. As of this last Friday, I will have had a drain on the right side now for 5 weeks, and I'm sure I'll have it for a lot longer. I'll never complain about Flotsam 2.0 again.

Raven4mi, I'm sure you have said it before, but was this for a mastectomy with some kind of reconstruction? Or a lumpectomy with some recon? Or part of a reconstruction procedure?

So sorry you were in the hospital, and that's a great heads up that you had no swelling or redness but pain off the chart.

greykat I am sending you a big hug. No one needs that negativity. And yes, life still hurts however old we get. I realised that very much this year. We are all little girls deep down. Xx

So here's my big catch up post after being gone for a few days.

Momof6littles, I took the recommended laxative a day or so prior to surgery (Seonokot-S.) The PS said it would combat the potential binding effect of the Norco which they prescribed for pain when I got home, but I never really had a problem – maybe because the two drugs cancelled each other out!

Tsoebbin, I was not able to sleep on a side until after a drain was pulled and then, because it was only one side, I kept waking up with a sore neck/shoulders. So I'm STILL sleeping in the La-Z-Boy 5 weeks later.

WifeMomTeacher, congrats on clear nodes the good pathology report.

Lorice, I was on Norco post-op, but really only needed it for 3-4 days, then went to Extra Strength Tylenol. My PS didn't want me to drive for at least 2 weeks due to the limited range of motion, and so I didn't. But in an emergency I'm sure I would have managed just fine.

I'm a little jealous about these camisoles you're all talking about. No one even mentioned that as a possibility for me.

Good luck to everyone who's having procedures this week!

NattyB, yay for negative nodes! Sorry the port is giving you problems.

Mom4four, I think the ups and downs you're experiencing are perfectly normal. I've had so many high highs and crushing lows through this process that I'm shocked I don't start throwing up from all the ups and downs!

Grandma3x, glad you didn't have a blood clot! And what the hell kind of nurse blames a swollen left ankle on right lymph nodes – can't she/he hear how stupid that sounds?

Papillon1, try not to freak out about your own drain removal – I didn't mean to scare you! Obviously I seem to be the exception rather than the rule as no one else has had a problem once their drains were removed and, heck, even I didn't have a problem on the left side!

Valstim52, I had NSBMX, left side prophylactic, with TEs.

Thanks all for the kindness - I didn't mean to elicit pity or thread hijack. It's just some people really can be cruel. Ok, in my life, just one. One is very, very cruel.

At any rate, no amount of "you do realize this is CANCER and it will KILL ME??" logic seemed to work. And after all, I have to live with it, not her.

In other news, I took off the dressing over my last drain site this evening, and of COURSE they ran the tape for it over my breast incision on the one that had the excessive bleeding, and of COURSE it peeled off an inch of scab and is now leaking a tiny bit. Seriously body, just stop. Just stop. My surgeon is on vacation and I am not going into the ER over this, so you better clot up and not split open.

grandma3x - any surgery that disturbs lymph nodes can have an effect in another part of the body that is part of the lymphatic system. As odd as it sounds, this can happen since the lymphatic system is not very different from the vascular system. Is your leg swelling still as pronounced, and has any approach to the problem been suggested?

GreyKat-you deserve that and so much more. You've been through so much and have been a super trooper. Continued good thoughts and healing wishes being sent your way

Praying Bfuruseth and allaboutacure best of luck today! You are in my thoughts and prayers!

Tried to teach my husband how to put my hair up earlier - in prep for not being able to use my arms high up for some weeks due to the immediate implants. That was... Interesting. I will invest in a hat! Lo