December 2011 Surgeries - want to wait together?

Good luck to all that have started back to work. Make sure you take it easy and don't over do it. I think my cording is work related. Over the weekend it hasn't bothered me at all, we'll see what happens tonight. Hopefully when I see PT they can give me exercises that will help.

Bogie... I'm not doing any HT at all. I'm 40 and premenopausal, ER+ 34% and Prog+ 97% I think. My MO said she didn't think it was necessary. We went over all the risks and benefits and she felt they were even. Given the family history of stroke, diabetes, heart disease, we both agreed that with the bmx, neg nodes and change in lifestyle, that HT wouldn't do any better. I still worry that I'm not doing enough. I even mentioned having my ovaries removed and she thought that was a bad idea. She feels that it's important to have the body function as normally as possible. That early menopause wouldn't help me. I have contemplatef a second opinion. But then I think that my MO does know what she's doing.

As far as the dieting, I haven't asked my docs, I need to lose weight. I figure if I can go back to work without restrictions I can work on losing weight. I've always thought of Weight Watchers but have found a program very similar that is free. It's called my fitness pal.com. They have apps for IPads and I Phones and I think yo can do it online. It's great. You plug in your info, log your food intake and exercise.

Goldlining... you are an inspiration. On my list of things to do is a 5K. I'm not a runner but have always wanted to do one. You've inspired me to start working on it.

Kam- I was on pain pills for the first 3 or 4 weeks. My ps had no problem refilling them for me. It is still pretty soon after your surgery so I would not worry too much. But when you see your dr ask about the swelling under your arms. Are you moving around a lot or using your arms a lot? You still need to be really resting and not doing much. I was still in the recliner at 12 days. Hope you feel better soon but do not be afraid of pain meds. When you are in pain it is hard for your body to heal.

Ginger- this is encouraging. As far as moving arms, I definitely got conflicting advice between PT and PS. One said do not raise arms above shoulder height (atleast not til drains are out), and the other, the PS said make sure you extend your arms above. I'm so fricking confused!



BUT, just after writing above post, one of my remaining two drains just put out over 100ml in last 11.5 hours. I've been getting readings that would allow their removal (3-10 in 12 hours), just waiting for a consistent 48 hour period, then i was going to go to a local NP and have them removed. This is larger than anything I've ever measured. The bulb was fully extended and I wondered if I had forgotten to expel the air after emptying the last time, but that would seem to me to create less suction, not more.



I am at such a disadvantage living so far away from my providers.

Oh my stupid work... My surgery was Dec 15, and when I went home from hospital after 5 days, they said see the dr in 2-3 weeks. That was Jan 10. At that appointment, they said come back in 6 weeks. When I asked for that appointment, they gave me March 7. So their calendar math is a little stretchier than mine is.

My director said HR requires me to have the "treating physician" approve my return to work (RTW) before I do any work, to reduce the employer's liability, therefore I can't "unofficially" work before this appointment (despite the fact that I have been, and people up to the VP level damn well know it), and the surgeon's office said he couldn't approve RTW before seeing me. However now HR is crabbing about the calendar math, like I did not notice that it was more than 6 weeks from the follow up to the March 7 date. (It should be said that my sick benefits are ample to cover me to and even beyond March 7 if needed.)

I explained to HR that I tried to get an earlier appointment and the surgeon knew my planned RTW date but seems to be away and unavailable at the material times for checking my condition. So HR says "can't you go to your GP?" I said, you told me I had to be cleared by my "treating physician", plus I don't think my GP has ever seen a DIEP, good or bad. All she would be able to say is "she says she feels fine". (And I don't have a lot of confidence in my GP. She is a port in a storm but very not helpful.) I said if you will take hearsay from my GP, why can't I just come back when I want? The other thing that pisses me right off is that I can't refrain from all "work" until I see the PS because to be off, I need to prepare more material for my replacements to do, due to the nature of my job.

Honest to dog, I have had more stress from freaking HR than I have had from the DCIS or the DIEP.  (And in other Employer of the Year news, I just got a pink :-P flower arrangement from the level one up from my Director. They just realized I have been off since Dec 15.)

Goldlining- HR is fun, isn't it?  Just send your form into the DR office- let them figure out how he will sign it!  tell HR its in the works, and just do the best you can.  I can't even go to meetings when i am off or it impacts my long term disability- and my MO will not let me work.  HR said I could go to the mtgs, but not get paid if I went.   Not so sure I want too anyway.  But the game must be played so you get all the benefits you deserve.  Good luck.

I can't figure out the whole work/disability thing either. I received a letter from the diability insurance company saying I was to return to work 2/7, but it doesn't say what kind of work I'm able to do.  Travel is a major part of my job (80%) and I can't raise my left arm above my shoulder, so how do I carry my luggage and get things in the overhead compartment? I won't know if I have to have chemo until this Friday - if it's necessary, how do I travel 4 days a week?

So frustrating...

Let's see...I met with the PT/LE Specialist at the hospital yesterday and liked her a LOT! I did share with her how disappointed I was in how little emphasis was placed on LE, not only before/after my surgery ( I "only" had an SNB), but also at the workshop I went to where I got some ridiculous information.

She started out by explaining LE in easy, understandable terms, and gave me more explicit info on how to avoid it, especially in my left arm. Just because I had only three nodes removed, and have no signs of LE now, I could get it anytime in the future, and it pays to be safe. She said one of her BC patients had no LE at all for ten years, then one day her garage door got stuck open, and she yanked really hard, repeatedly, to get it shut. Then the LE hit.

She said that if I were to go back to the gym, the free weights were better than the machines....but either way, my maximum limit should be 5 pounds. (I think they had me at 40 pounds before surgery!)

I asked about cording. She checked my upper arm and didn't feel anything, so I told her to check harder inside my armpit. She agree that I might have some minor cording (Axillary Web Syndrome) and that in the majority of cases, this was self-limiting - it would go away on its own. But if I wanted to, she showed me how to do some massage, with my thumb moving one way and my fingers the other way, to stretch it out.

(It really hurt when she did it - but only because my skin is so sensitive, and she didn't use lotion. "Oh my!" she said when she saw the red marks on my skin. "You need to be more gentle than I was, and use lotion!" ....."or do it in the shower...").

I could still feel the area yesterday morning, but it felt like a wire instead of a rope, so I think it's getting smaller. She said that cording is an irritation of the lymph duct, and is not lymphedema. In my case, it was very small and would probably go away soon. But in the meantime, she encouraged me to keep taking the LE precautions.

The seroma, which felt like the size of a golf ball after surgery, is now just barely perceptible. She said it as o.k. to massage that as well, to help it reabsorb into my body.

I came home with a bunch of new exercises, and a whole lot better understanding of LE and cording.

Moonflwr912-How do they take your BP?

Kam- I was not allowed to reach my arms above my shoulder for 5 weeks post BMX.

Ths morning I re-read my pathology report (sorting out bills and such and trying to make order from chaos.)  I noticed the following "Invasive Ductal Adenocarcinoma".  I had not noticed that before, too much info on the six pages of the path report.  So now to find out all about that.   Always seems like there is always something else to find out about.

Teresa

The brain thing is me too. That's why I am not driving. My arms could drive fine but it is not fair to the other innocent drivers for me to get behind a wheel. Off to take the streetcar later and go secretly to work...!

CarolAnn- have a good fillup!  LOL

Kam, I had a bmx and am 5wks post op today and I still have fluid build up that the BS has to aspirate every week (such fun) and I have the fluid swish too. Two of my drains got removed at one week and the other two fell out on their own at almost two weeks. My BS is considering sending me to get a drain put back in by a radiologist..uh no thanks lol. He still does not want me to raise my arms above shoulder level, so they all have their own philosophy of time to get things moving again.

Moon, They take my BP in my leg. They actually started that while I was in the hospital and I have just continued to tell them no BP in either arm. It is quite comical to see their looks.

Blessings, great that you got a Pt you really like. That is so important.

Boogie, how are you "openings" doing? I have three spots on my incision lines that split open and still don't look like they are getting any smaller. It is driving me crazy because they won't do my surgery for clean margins until they heal.....blah!

golding, a marathon? you go girl, dang. I can barely walk a block without needing to sit down from this silliness.

On a good note yesterday I talked my BS into letting me go back to work part time. I went today for first time for four hours, I made it but boy was I sore when I got home. But at least it felt good to be at least a little back to normal! Everyone was so great welcoming me back but man you have to watch out for the huggers. I kept finding myself crossing my arms over my chest when someone came at me with open arms...lol. It was a little embarrasing not being able to wear any forms yet because of the open wounds, but no one looked like they were staring, so I think that was just in my head lol. I wore a shirt with pleats in the front with a cardigan with a ruffle that runs down both sides so not quite so noticable maybe (although I was a dd before the bmx so it is noticable to me).

Gabe &Moon,



Yes my surgical wound over 6 weeks post op are still far from healed. One side that tore is not closing up and the other side has a few gaps, but seems to be trying to heal and are much smaller. The large opening is where it tore in the hospital. PS said if it doesn't improve In another week, he has to go in clean it out and restiched it in his office. I'm going back to work next week and worry about infection.



Went to get my blood pressure and blood drawn this morning and "again" another office was unable to get an accurate blood pressure in my calf, it was much higher than normal, so they just give up, nice huh? Then I went to the lab to get a blood draw. I told them I had a bilateral MX and Need to just take it from the arm where no lymph nodes were taken out. I then told her I'd prefer my leg if possible,and if taken from my arm NO turnakit. Her response was we are not trained to take blood from any place but the arm and you will have to go to the hospital for that. I said ok take it from the arm and do not use the turnakit, she tried and could not get any blood. So put a band aid on it and sent me home to hydrate more and come back tomorrow. I'm very frustrated. My lymphadema specialists said she prefer no blood draws even on the good side where no lymph nodes taken out.



I can't believe we are the only people on earth requesting this. The lymphadema specialist is much more cautious than my surgeon.



What's a girl to do.