Thursday, August 25, 2011

Follow up to surgery

I went in for my follow up appt today. I got to see the P.A. Today and not Dr G so it was a pretty pleasant visit. She removed my drain tube, so at least I will get to enjoy our 11 year anniversary this weekend. Chris has booked us a weekend at a super nice and beautiful hotel in Houston. He has a few surprises in store for me and I'm glad I don't have to carry that stupid drain bulb and tube with me.

My stitches may come out next week. It depends on how it looks. If it is healed they will remove them, but since the skin is so damaged, they may need to stay in a little longer.

So, aside from that and my 2 oldest starting school (1st grade and 3rd grade) I have had a very nice relaxing week at home. I knocked a bunch of little things off my list. Stuff I could do one handed because I can't really use my right arm. They are afraid it may bust the stitches, so even though my arm functions, I can't use it. That's hard to remember when you feel so motivated to do something.

I'll post more after I get back from our get-away.

Friday, August 19, 2011

Bedside "Un-Manner"

So, here is what went down since Monday.... Now, I will add as a disclosure, that I just got out of surgery 6 hours ago, so my anesthesia may still be lingering, so I'm not responsible if I sound loopy, or if I'm not making sense.  I'll have Chris proof read it when I'm done to make sure I didn't leave out random words.

I went in for Dr Garvey to check my stitches from my surgery 8/8 and see if they were ready to come out. I was a little ticked at him already because as I was in the PACU recovery room, he walked past my bed TWICE and never once popped his head in to check on me. I've never had a doctor do that to me. I know they don't always pop in on you when you're in outpatient recovery, because often times, they are in another surgery by the time you're awake. But, he walked past my bed twice and I was awake. NOTHING. I was also a little upset because of our conversation that took place at our last visit prior to that. Needless to say, he was a little on my bad side already and I was going to ask for a different surgeon after he took my stitches out. Our personalities just don't match. I think I mentioned that in my last post.

So, he decided to leave my stitches in another week because my incision had not completely healed yet, which means that I have to see him again. *eye roll* So, we get to talking and he repeated a few things that he told me at the last visit. But, here is the icing on the cake......(portions of our conversation from this Monday)

Dr G: "Yeah, it's (incision site) having a hard time healing up because your skin is just so charred from radiation. She (radiation oncologist) just burnt your skin so bad."
Me: "Yes, because SOMEONE (Dr Garvey) didn't deflate me ALL the way as requested by her, you left 300 cc's in the expander, saying it was ok, so she had to radiate me deeper to get through it."
Dr G: "Yeah, ok, so it's my fault...whatever...you can blame me, she can blame me, I can blame her, whatever. Bottom line is that your skin is destroyed"
(did he just say "whatever" to me???)

Dr G: "You need to compromise and lower your expectations!"
no response from me because what the heck does he possibly mean by that??? I think I've already compromised and lowered my expectations by dealing with Cancer! Cancer boobs are much different than "augmented" breasts, so I've already done both of those! I don't expect stripper boobs. I don't expect bikini boobs. I just want normal boobs that look good in clothes!

Dr G: "I never changed plans on you. I've said the same thing from the beginning."
Me: "No, I asked you if you'd have enough to do 2 decent size breasts with the TRAM flap and you said Yes. When I asked you if I should lose weight, you said yes. So I did, and now you are saying that my breasts are going to be triangular shaped and much smaller if I do both with the TRAM flap"
Dr G: "Ok, let me put it this way....(looks at me like I'm a dumbass and talks slower) if I take the flap and cut it in half, and use it for both breasts, they will be smaller because I'll be using 50/50 portions. If I only do one breast, I'd be using about 70% of it on one side. Does THAT make sense to you?"
Me: "I'm done!" and I hopped up off the table, threw my hands up in the air, grabbed my bra and shirt and started to get dressed.
Dr G: "Would you like me to get you in with a different doctor?"
Me: "YES!!!"
Dr G: "Ok, I will get you in with Dr Skoracki" and he left the room.

So, Tuesday, I spoke with the patient advocate and told her my story. She could not believe he said those things to me and spoke to me the way he did. She filed a copy in the advocacy file, and also with the director of Plastic surgery. I was supposed to go in to meet Dr Skoracki in the first week of September. She repeatedly apologized on MD Anderson's behalf. She said that is not the way they are trained to deal with things, and she just cannot believe it. You could tell she was stunned, and on my side. I'm so thankful they have a patient advocate!!!

Then, Wednesday, my incision started leaking. CRAP!!! See blog post below this one....

Thursday, I went in to see my PA, Marla, because I told them I didn't want to see Garvey and Skoracki is on vacation. It really sucks that all this happened while I am in the process of switching Drs. So, she tells me that she got a page about me that morning telling her what had happened. She spoke to Dr Garvey, and said that he felt awful about what happened Monday. She said he really doesn't like the way it happened, or things that were said, but she said she respected me for saying "I'm done" and walking away rather than saying something I regretted. She said He also respected me for that. She said she talked to him about describing my breasts as being triangular shaped, because they aren't gonna be triangular shaped. She doesn't know why he used that word to describe them. She said she is proud of me for standing up for myself because a lot of patients don't. They just put their tail in between their legs and say Ok. I told her "It's MY body and I'M in control of it...NOT HIM!!" She said it reminded her of a sibling argument because neither of us were backing down.

Anyways, after all of that, she said he was willing to do the surgery and recommending it because if I let if go over the weekend and wait for Dr Skoracki to return on Monday, it could be later in the week before he could do surgery and the risk of infection is so great now that I have a seroma. So, my choices were: Let Dr Garvey take my expander out......or wait for Skoracki out of hard-headedness and risk getting an infection.

I know when to let my hard-headedness go.....

But, before surgery this morning, I requested to speak to Dr Garvey before they took me back. He came in and looked at my incision, and we talked medical jargon for a bit. (He brought in a medical student with him who he is apparently mentoring) So, he said "Do you have any more questions"

hehehe

Me: "any apologies?"
Dr G: "For....?"
Me: "talking to me like I was an idiot and saying   'does THAT make sense to you?' "
Dr G: "I'm sorry for the way things turned out between us."
Me: "well, your bedside manner leaves a lot to be desired because you walked right past my bed last surgery 2 times and never popped your head in and I was awake. If you don't change your bedside manner.....I pity your patients". (yeah, probably a little over the line...I know)
Dr G: placed his hand on my thigh where he was standing, in a manner to calm me. "look, let's not go there again. Let's just get this surgery done and get you all fixed up for Dr Skoracki. I need you to have trust in your Doctor for today"
Me: "Well, that's hard to do because I lost all respect and trust in you Monday when you spoke to me the way you did. I'm very nervous about you doing my surgery today, but I don't have another choice"
Dr G: "well, you do, but it's not one I recommend."
Me: "I know.....so I either risk getting an infection, or risk you doing my surgery"
Dr G: "OK, so, I take full responsibility for what happened between us. I'm very sorry. I'm sorry. I really am Sorry."
Me: "ok. Thank you. Please be careful and give me back to my husband and kids...OK?"
Dr G: "I will" (smile)

He shook my hand and Chris' hand and left the room.

Marla came back in (because she had come in halfway through our convo and started to cry (which I was crying too). She said more of the same stuff. He's probably in the OR hanging his head in shame, he's really upset that this happened. Then she tells me I really need to get a job as a patient advocate for patients who are too scared to stand up for themselves. HAHAHA. She said I would be really good at that because I'm very stubborn.....just like Dr G, which is why we butt heads.

So, it's not really that I'm stubborn....I just am a visual person. I need to know that if I use the TRAM flap and do both sides (which I am GOING to do, even if I have to switch Dr's outside of MDA) I need to know that I have another option, maybe put some implants behind the TRAM flap in a few years, maybe get some lipo or something from somewhere and have it injected in there....something. Tell me that I have other options if I'm not happy with the results.
IF....
I may be happy with them. But, I won't know until I see them.....because I'm a visual person!!! He never would answer those questions. I got "we'll cross that bridge when we get there". That's not an answer!!!

So, I'm out of surgery. All is good. I am concave and wrinkly. He used the same incision from a week ago, rather than using my mastectomy incision. He just made it a bit bigger and ruptured my expander and pulled it out, and then used some tool to basically burn the inside of my "pocket" to help it close together so it wouldn't collect fluid. Kind of like a cauterization? Then, he placed a drain tube to help drain all fluid from the pocket. I can't wear a prosthesis for a few weeks until it's fully healed. So, they told me to use batting, (light and fluffy) since now it's VERY noticeable that I'm lopsided.

Everything should still be in tact and OK to use for reconstruction. The expander did it's job, and saved the skin that was important. It shouldn't shrink down over the next few months while I heal.

Not sure when reconstruction is going to be now. I'll update more about that after I speak with Dr Skoracki.

I have to see Dr Garvey one more time this Thursday for a follow up. I'm not sure if he will be removing my stitches, or if they will stay in until I see Dr Skoracki. He will probably remove my drain tube Thursday, depending on my level of output.

They don't want me working out for a month....except walking. BOO!!!!

I think I've answered most of the questions that people had for me on Facebook. If I haven't, ask them below, and I'll do a Q&A post soon.

Thanks for your prayers! I really felt them today.

Love you guys!!!!
Tiffany


3 surgeries in 32 days?

I'm on my way to the hospital for yet another surgery. It seems that I developed a seroma from last weeks surgery so they have to remove my expander to avoid infection. A seroma is a fluid pocket that is more common after a mastectomy, but not as common in a "necrosis debridement" which is what I had last week when they closed up my hole, or chunk of missing skin. I noticed Wednesday morning that I was really sweaty in my armpit shortly after I started my workout. It was weird because I don't sweat from that arm since they removed all my lymph nodes. I was actually excited because that meant that everything was working correctly even though it's very rare. Well, later that day, I took off my sports bra and noticed it was wet, and so was my skin and my hand where I had just touched my skin. I looked at my incision and noticed something leaking out of it. It looked like a clear fluid but it had a slight tinge of yellow if you wiped it on something white.

I called the ER and they said it wasn't emergent but to come in first thing Thursday morning. I went in and saw the PA and she said it was a seroma and if it is coming out, that means bacteria can also go in through the same opening. So we have to get the expander out before infection sets in. It can set in quickly, and turn deadly quickly, so they put me on the surgery schedule for today. We are on our way down there now.

Please pray for me today. I don't have a lot of trust, faith or respect in this doctor, but the new plastic surgeon I am to see is on Vacation, so I have to let dipshit dr with no bedside manner operate on me. I have faith in God and I trust in God, so I know that he will keep me protected but I am very uptight and stressed about the surgery.

Chris will update my FB and twitter sidebar and I'll try to blog again as soon as I can. I have to tell you all about dipshit dr and what he did to make me switch Drs.

Tiffany

Sunday, August 7, 2011

What's new?

So, tomorrow, August 8th, marks the 3 year anniversary of Grayson's cranio surgery. It also will be a surgery date for me too. Yep, again.

I went in for a followup with my plastic surgeon, and he checked out the hole that I got in my skin a few months back. I don't think I ever got a chance to write about it on here because our summer was so busy. Anyways, I had gone in a few months back for him to check it out. He basically said it was a chunk of skin that fell off because it was damaged skin from radiation. He gave me some silvadene cream to put on it twice a day and said it was very common.

Huh??

So, right under my arm pit (in the famous butt crack I've spoken about) I had a small chunk of skin fall off. Don't worry, I won't post pics because it looks really gross. It started off about the size of a pencil eraser. Well, 2 months later, after the cream, it is now the size of a large pea. It's white underneath, but, originally, he said that it was just new skin trying to grow. Well, now that it has gotten bigger, he says we have to close it up.....ASAP. It's basically an open wound in a spot that is very hard to cover. So, he is going to do an outpatient "debridement" surgery. Basically, cut out the hole and sew my skin back together.

So, I'm kinda pissed that at first he said it was nothing, and now it's "lets do surgery right away". But, I was going on vacation with the family, so he scheduled it for the day after we got back. I asked him how common it was because he told me in the beginning it was very common to have this happen.....he said "it's common" and then I asked how many of his patients have had this and his answer....."NONE".

WHAT???? Real common huh?

But wait....there's more.....

Then he goes on to tell me that if I opt to have the second breast removed, he won't have enough to do a large enough breast on both sides with the TRAM flap procedure and they will be somewhat triangular in shape. He said I'll get a better aesthetic result if I just get a lift on the left side and the TRAM flap on the right side. Then, he said that because of the gall bladder surgery, he has to delay my reconstruction surgery. (I went in for my followup with my gall bladder surgeon a few days later and he said that it shouldn't delay anything because it's almost completely healed and it's only been 2 weeks). So, originally, Dr Garvey told me to lose all my weight before reconstruction surgery or it could make my breasts uneven, because your breasts will do the same thing that your stomach did in weight loss. (IE: get bigger, or smaller, depending on if you gain or lose weight) I've only lost 10 lbs so far, and gone down 1 pant size. I'm thinking he is now changing plans because he is realizing that I was right when I told him that if I lose all my weight, he won't have enough to work with. But, he had assured me that he would, despite me telling him that, and he said "We will cross that bridge when we get there". GGGRRRR He really pissed me off that day! He basically led me on for 6 months telling me that he would be able to reconstruct both breasts using the TRAM flap, and now he is changing plans.

He says that he doesn't recommend removing the other breast because the odds that it would get breast cancer are slim. (Yeah, and so were the odds that I would originally get breast cancer because it wasn't genetic, and I didn't have any contributing factors. I also did everything that was supposed to reduce your odds.....have 3 kids, breast feed, eat healthy, etc) He also said that there was a chance of the healthy one getting infected if I remove it, and therefore, I would be left with no breast, so I need to decide which I would rather have. (I kind of feel like he is trying to cover his ass in case it does get infected so he can say 'I told you so') Then he said the only thing he can guarantee is that they won't match. He said no one matches before cancer, and no one matches afterwards. So, I am going to push for a removal of the other one with an implant on that side, and the TRAM flap on the other side. I'm not a plastic surgeon, but it makes sense to me that it would work....and if they aren't gonna match anyways.....then who cares? As long as they look decent in a bra and tee shirt, I am good with that. I just don't want to be running downtown in a panic every time I feel a lump on the other side. I have a long life ahead of me and I don't want to live it in fear. He said that with all my screening, even if it DID come on the other side, we could catch it early enough. (although, this stage 3 golf ball size lump showed up in less than 6 months from my prior OB exam, so if I am scheduled for 6 month scans and eventually 1 year scans, how can he guarantee that he can catch it any earlier? It obviously is very aggressive when it attacks)

So, I am going to spend the next few months going around and getting other opinions. I might possibly switch surgeons, and might possibly not be with MDA. I just want both breasts gone so I can live with less worry, and have a somewhat decent size and decent looking rack. I have broad shoulders and my ribcage sticks out pretty far, so I can't have anything smaller than a full C or small D cup or I'd look roley poley. Hence, why God made me with the size I have now.....

So, tomorrow, keep me in your prayers, since I am loosing faith in this plastic surgeon, that he can close up this hole without any complications. I go in at 11am and Chris will update my Facebook and Twitter when he hears something.

Thanks for all your prayers during this CRAZY adventure I've been on!!!