May 2016 Surgeries

SpecialK and MyToyStory2, and I am SO right with you on not caring what the end result looks like, as long as I look good in clothes. After all this time being flat on one side I'll take just about anything I can get at this point! One of my PS's interns used the "sisters" analogy with me too - not identical or even fraternal twins, just sisters. At this point I'd just take two girls that kind of get mistaken for each other every once in a while. LOL!

Hi everyone. Been an unexpectedly rough week. Started PT last Friday and I've been in function-impairing pain ever since. The first session left me in pain for three days. After the second session, I got worse. Numbness spreading on left side and over to right hand now. More nerves being squished - wasn't supposed to happen. Was sort of fixed at the third visit but left with numb fingertips on both hands. I'm being good and doing my exercises but this whole getting-worse thing is seriously discouraging. I can't do much of anything bc of constant pain.

Very crabby over here. I do like the new PT guy though he's kind of bouncy and a bit rushed-seeming compared to the last one. Everyone's got their own way.

They've determined the nerve damage currently causing problems is up quite near or right at the spinal level. Because of the months of deinnervation and resulting muscle paralysis/weakness, I have bones that are moving that shouldn't and bones that aren't moving that should, providing multiple points for additional nerve squishing. There's persistent weakness and function loss in some arm muscles, and other big ones around the shoulder/spine which are strong enough but no longer work together as a unit to do their job, and I have to go through muscle retraining to teach them what they were born to do.

So that's what happens, kids, when you sustain a major injury to nerves and the doctors tell you "There's nothing you can do" (flat wrong) instead of the textbook treatment of an immediate handoff to PT. An EMG after surgery when I woke up with a half-numb arm and a hand I couldn't use would have illuminated this whole mess and saved me, probably, a fair amount of trouble. Certainly it would have been easier psychologically.

Have I mentioned I'm feeling really crabby?

As for timeline until rescheduled exchange: can't have surgery until this is fixed. Nerves take months, years. They just do. I can't imagine I'll be in any shape to have surgery before next year. I'm still getting treatment for the aftermath of an hospital-acquired infection that has an atrocious lifetime return rate, and that is on a several-month plan as well. Can't have surgery until I can get back in fighting shape, bc odds are good on the infection return, and I've got to be able to stand it and the harsh antibiotics used for it. So I've got to keep that in mind, too.

Crabbiness 100% justified, GreyKat!! Thanks for the detailed update. We're all pulling for you and can't believe what you've been put through! It's shocking how life-changing this 'routine surgery' has turned out for you.

Brazil - Lucky you, Grandma! Enjoy the conference and the culture!

Here, you go, GreyKat - I posted this to Facebook the other day; thought you could borrow it:

Hope things just get progressively better for you.

I'm starting to get anxious about my fat grafting on 10/25. Got my final pre-op Vitamin C IV today, the first one at full strength. Let me just say.....ow! When I got the 3/4 dose two days ago I had just a little bit of pain at the site of the IV; I just figure it was seated weird in the vein and it seemed to get better as it went along. Today, the pain was shooting all the way up into my shoulder. Evidently it's pretty common. She slowed the drip way down and wrapped my upper arm/shoulder in a warm blanket and that really helped, but because it was so slow it took three hours. I'm not giving up though; I really feel like I'm doing all I can at this point to ensure a good outcome. I go back for one more full dose IV two days post-op and I'll take a heating pad with me which she said sometime helps; since the warm blanket worked I'm sure the heating pad will really work. No idea if I'll be able to drive 2 days post-op, but I'll figure something out. If necessary my husband can use a "work from home" day since there's wireless at the center.

So....just finished pre-op Vitamin C, still taking the Singulair, K2 with Vitamin D3, and Iodine Complex, and I see the ID on Tuesday for whatever pre-op antibiotic he's going to put me on prior to the fat-grafting. Just have to get my house and menus in order for my husband and teenagers then I should be good to go. Anxious, but getting ready!

myToyStory2, I hear ya on the weight loss! I had lost 25 lbs. prior to my mastectomy which seemed to take for ever, but easily put back on 15 lbs. over this past summer in just three months. Kind of annoying. And, yes, when my husband makes a concerted effort he can drop weight really quickly also. Men! Ya can't live with 'em, and ya can't shoot 'em! Sorry I can't help you with the sizing - I'm at 750 ccs and, honestly, it's only a little bigger than I was pre-op (I liked my boobs!) And since they say the implants often are a little smaller than the TEs when all is said and done, I'm probably right where I should be.

Had a conversation with a good friend last night about my upcoming surgery. I mentioned to her that I wasn't telling any of my "traditional" medical providers about my high dose Vitamin C IVs and she was really concerned about it. My response was: First, I DID mention it and no one seemed to take me seriously. Second, it's better to beg for forgiveness than to ask for permission. Third, if I did tell them, they would just tell me to stop doing it for a week before surgery (which is exactly what the naturopath said they would say) so I've already done that - had my last pre-op IV yesterday. Lastly, I feel really indignant about the fact that I had to do all the research on these additional prophylactic/integrative treatments in the first place in order to try to ensure a good outcome, so f@#% 'em - if they won't tell me about these things and aren't doing everything they can to help me then I don't feel obligated to tell them.**

**See cranky pants picture, above.

Interesting, Special K! Well let's hope you get the lesser amount on the pain scale, Raven! Are you done with fat grafting now, Special, or do you have more of these in your future? You are such a trooper for going through all of this!

Congrats on your weight loss, Raven! You're still ahead of your starting point! Unfortunately I wasn't in great shape before my bmx. It had become a crazy year at work, I was drowning in kid and volunteer activities, aging parent issues were cropping up, and I just hadn't taken good care of myself as I typically do. My fat pants were starting to get tight, and I felt like I kept telling the medical folks, 'I'm usually in much better shape and not as flabby' at all of my appointments. Wanted to get back to my old self over summer, but the diagnosis + a May bmx followed by 10+ weeks of drains attached to my body + a nasty infection really slowed me down.

But now I'm trying to put myself first again. DH is doing the same. He was running the same crazy schedule as I was and his health paid the price, too. We don't like feeling 'old' - we want to stay active. I know that more weightlifting would help me see better results, but I can't get over the (probably irrational) fear that I'm tempting fate with these already fragile foobs, so I've been sticking with the treadmill, elliptical, and bike - and classes that are more cardio and leg work. I LOVE yoga, but haven't gotten back to it either because so many of the poses depend on strong shoulder and chest muscles or are done on the stomach. I figure I'll find my way back to it after the exchange, and I'll start seeing those results I desire. Just praying those surgery complications stay away this time!

YAY for no cancer AND for possibly seeing the light at end of the tunnel, Special K! (And thanks for being a light in our tunnels, too!)

Thanks for the CrabbyPants picture. It's been a week of debilitating pain, increasing loss of ability, and lots of tears and kleenex. Rant ahead. Feel free to ignore. Personal comments at end.

Weary, weepy rant: I hate life. This cancer mess started over a year ago now, I've had more than five months of pain and paralysis, and I've burned out. I hate every bit of this. I've decided to take a few months and avoid the PS who's pressuring me because I have nightmares every time I have to see or talk to him - and clearly I'm going to need a lot more PT before I can handle more surgery.

More Rant: I am really angry at my doctors. My quality of life is dreadful, I have significant loss of multiple muscle function, difficulty grasping items and using my hand, chronic agonizing nerve pain - and this should have been caught and treated immediately while it could have been fixed or the worst prevented. I spoke up repeatedly and argued and called the bloody hospital hotline! and they still botched things and ignored developing signs of trouble until finally someone realized after 4 months that spinal nerves had to be involved. How do you miss that? How do you miss something that major? How do 5+ doctors (not counting their proxy residents; also there would be many more if you include the various neurologists from the re-hospitalization) from various fields all manage to be so myopic that they miss the obvious? Do they all lack the basic problem-solving skill of taking multiple pieces of a human body puzzle, pulling back, and seeing the big picture? Variables A, B, C, D, F, H, and M could be caused in various combinations by X, Y, or Z, but could most likely be all caused by W, in which case this is a classic presentation of a very well known injury. How hard is that? How much med school does it require to remember the Big Red Flags for Big Nasty Nerve Injuries Requiring Immediate Attention / Refer Your Patient To Someone More Qualified Right Away? Was it stupid, stubborn doctor pride, too unwilling to admit he didn't know? The arrogance of "it couldn't be my fault even though I'm the surgeon"? The refusal to admit maybe he made a mistake in handling my case and then dug in rather than admit he was wrong? Or just that he doesn't really care or want to handle this, in which case I really don't understand why he didn't "Refer Your Patient To Someone More Qualified" and get this particular aspect off his responsibility list.

/End rant. Every time I have to cover medical history with a new person at the hospital, I get asked why on earth it took so long to get the right kind of help when time matters for recovery, and I get freshly angry.

Exciting for you gals having exchange/fat grafting/etc soon. I hope it goes well for you. Just think of having even firm squishies over these TE rocks, right?

SpecialK - sounds like you've had a long and rough ride. I hope you get a break too.

greykat - while I had some issues early on - healing problems, surprise positive nodes, a lot of surgery, struggles during chemo with some unusual and nasty side effects, and bi-lat lymphedema - much of my surgical intervention came several years later and it is easier in my mind to separate it from the cancer itself. It is like a disconnected problem to me and that has been a good thing because it is less tied up with fear and cancer - a case of compartmentalizing for sure. It has been a bit of a problem to have these issues drag on for so long though - it has prevented me from returning to work, and being able to plan for my life in a normal way. The abnormal PET in May brought up the distinct possibility of recurrence, but those reassuring answers came relatively quickly - everyone weighed in as a team, BS, PS and MO, even though they are all in private practice separately form each other, and we got biopsy results back quickly as well as an eyeball by the PS during surgery which was less than a week after the bad PET result. I can see the end of the road now (hoping that doesn't jinx me) and I am so hopeful that this will come for you too. It is hard to keep slogging in the trenches, particularly when pain is involved - both physical and emotional, and the frustration that your case should have been handled differently at the outset of problems. I get that - I should have changed plastic surgeons earlier - I will never know if that would have prevented some of what happened and how things unfolded - totally get your questioning the ostrich mentality of the surgeon. Trying to keep your head in the game can be a challenge when seeing less traction and progress than you need. I am so sorry this is happening to you - hang in there, but know that I am hoping for better days ahead for you.

Hello All

It's been a while since I checked in. Working on my online doll shop again. It gives me great mindless joy. I've been an avid doll collector for decades but the time has come to part with a lot of my babies. My DD came up with the idea of an ebay store and it's been a success so far. More fun has been going through all the stored dolls.

I'm doing well considering the stroke. Stronger each day and and keeping my mind focused on a positive future and trying not to mire my thoughts with recurrence.

Going to a survivor workshop put on by my MO. Will be interested to see what goes on. I go to a very large cancer center and never heard of this until I got the word I was NED, or cancer free.

SpecialK , yes with the Nancy Ann dolls. Lizzie High I've seen traded at shows, but never had any. i have about 10 of the 5 inch Nancy ann's. PM me.

Valstim! Good to hear from you, and wonderful to hear you're able to get back to some of the things you love! Yay!

I've been stuck in the PT phase where I go to therapy, manipulations are done, and I go home and end up crying from the pain of the session. The pain AND the burnout. I passed my 1-year mark of this stupidity and I am so, so weary of it all. I look ahead and I just see lots of hard work with exercises and muscular retraining followed by more surgeries for reconstruction. The OT/PT crowd still thinks I'll need to go back to PT after my next surgery whenever that might be, next year, whenever, for evaluation for further surgical-related nerve damage, which sort of adds to the fear factor. I don't know how people do it. I want to go back in time and smack every doctor who told me I was a "perfect candidate" for this surgery and it should go just swimmingly well and I'd bounce back pretty fast because of my <40 age. Lies, lies, lies, lies, lies.

So it is lovely to hear from you Valstim and others who are still trucking along & getting better. Encouragement!

Edit: spelling.

Grandma - that's scary that they told you to ignore the lump for 2 years. Doctors are human and make mistakes too, but I don't understand the attitude of "it doesn't show up so let's pretend it doesn't exist". The scans aren't exactly infallible either.

At least long ago when I told the nurse I had killer DNA and a couple little lumps and seven months of unexplained breast pain they jumped to get me tested within two weeks at the cancer center. They take that stuff seriously there, which was nice, although it kind of scared me how fast they were all over everything and scheduling meeting with a BS to start planning. I remember one nurse telling me I'd be surprised how they could run patients through from start to finish in under two weeks if the cancer was, I suppose, "emergency" state bad. I think that kind of rushed timing would have really messed with my head. There's just no way to process anything this life-altering in that kind of time frame.

Good luck with your surgeries this week, Raven and Grandma! Fingers crossed things go smoothly and we all get the results we hope for and can live with! I'm planning to take 10 days off of work, but I really have no sense of how long the healing time is following exchange surgery.

Valstim - good luck with your doll sales! I played with dolls as a little girl, and even did seasonal work for American Girl for a few years (a very generous company) - so I am well stocked with AG items - but my daughter had very little interest and always went right back to her stuffed animals....Oh well...

GreyKat - I flunked my first mammo a year ago June, was put on the "watch and wait for 6 months" list, followed by more mammos and ultrasounds and MRI's and biopsy and finally a diagnosis in March. It's kind of sad to realize how long we've all dealt with the physical and mental stress of this diagnosis, and to know we'll continue dealing with it for a long time. Sending good juju your way!

Raven - Good luck with your fat grafting today!! I will be thinking of you and sending healing, antibacterial thoughts your way