Thursday ended up being worse than I thought. Got there in time to have my blood drawn and I took the 2 meds they said to take while I was waiting. I needed a full bladder for the procedure, so I drank a full 32 ounce Powerade plus most of a 20 ounce bottle and a large Latte from Dunkin. Yup, it was full.
The drugs? Um, can you say bad mix? I was HIGH. Crazy loopy. Unfortunately that didn't stop the pain. I got 2 local anesthetics... shots inside my who-ha! OH MY GOD! I screamed. Yup, I did. Tears pouring down my eyes. They put an ice pack under my neck and on my forehead before they started. I still almost passed out.
Come to find out, even my uterus is bad. Weird positioning, so getting a normal IUD to stay doesn't work so well. I need a follow up in 2 weeks to look at the positioning.
The my actual ultrasound, that was fine. They upped my meds again and now Jim has to give me 2 shots a night because the "pen" that the drug comes in won't do more than 450 units and now I'm up to 525 units. Great. 2 shots a night! Thursday, Friday and Saturday nights. Sunday I have an 8:30am ultrasound in Kenmore, with blood work first. Good thing I'm not sleeping and typically up at 4am now.
As far as the fertility drugs and the "harvest", based on the results of the 3 ultrasounds I have already had, the dosages I've been taking, this increase to 525 units and the size and quantity of follicles, my GUESS is that the "harvest" will be Wednesday-Saturday of next week.
I'm getting a little uncomfortable at this point with some cramping, so I can't wait for this to be done! I know that the size of my ovaries won't go down right away. It will still be slow going for the next 2-3 weeks until all is back to normal.
That was all Thursday. On to Friday. New Boobs.
Well, with my barely B's, even when he was joking about DD's, I know my boyfriend would have been very happy with an increase. Come to find out, reconstruction implants are a bit different than augmentation implants. When a "normal" person wants implants, the implant is put in with the existing breast tissue to expand the size. Not with reconstruction.
First, the mastectomy. Think of it like a Halloween pumpkin that you are craving. Because the tumor is so close to my nipple, most likely it cannot be saved (they do nipple sparring mastectomies). Plus, with the BRCA2 gene, my thoughts are that the more tissue is left, the bigger the chance of a return. Take it all.
For the mastectomy the incision is horizontal, several inches across each breast. They cut an oval to take out the nipple and areola. Then, like a pumpkin, the breast tissue is basically scooped out and removed. That's where the breast surgical oncologist is done.
The plastic surgeon said that her part will take about 1- 1 1/2 hours each side. She will put the expander in, under my pectoral muscles and every 2 weeks I will need to go in. She'll use a butterfly needle, like getting blood drawn, to add saline into the expander, slowly filling it and stretching the muscle along the way.
Once the expanders are full to where they are going to be (time can vary on how long that will take), I will have a second surgery. She will take out the expanders and put in permanent implants. At that point, she'll make any other necessary adjustments. And 3 months after the 2nd surgery is when nipple reconstruction can start.
Because part of my skin will be removed, there is only so much space to fill the expander. Only so much room in the "balloon" to fill without making the skin too thin. I guess its lucky that years ago I had gained weight and got up to over 160 pounds before dropping over 30 pounds. I was up to a C cup for a short time, which stretched it out a bit.
Per the plastic surgeon, I have a slight droop. Yup, droopy boobs now since I gained and lost weight. BUT that gives a little extra skin for the expanders. I MAY be able to go slightly bigger then I currently am. That's not a guarantee. Considering the scarring and removing the nipple and areola, tissue will be removed before sewing me back up.
At the end of the appointment, they brought in a book of pictures showing before and after, plus nipple reconstruction with tattooing (yes, they form a nipple with the skin then tattoo around it to make it look as real as possible.) Per Jim, they looked pretty real in the pictures. I don't know.
Even after the nipple reconstruction, there was a visible scar. The plastic surgeon said it would be 3-4 inches across each breast and would fade over time. Really? I got my appendix out October of 2002. I still have that scar visible now, 10 years later. The ones on my chest will fade? Yeah, sure.
I asked about the recovery time. First, how long before I can work from home. I THOUGHT with the surgery on Thursday, January 17th and that Monday being MLK day, that I could work from home on Tuesday. At least that was what the surgical oncologist had said. Not per the plastic surgeon. She said two, possibly three weeks before I heal up. Even moving my arms around, picking up the phone, moving the computer mouse, may impact how the tissue heals up. So now I'll be out of work a lot longer than I had thought.
Then I asked about the drains she will leave in me. It will be 2 on each side to drain out the fluids after surgery. Since the tissue is being removed, it will leave a void in my chest. That void can fill up and cause infection. I will have two drains on each side. One on each side on the top. One on each side on the bottom. The top ones will be removed after about a week. The bottom ones will be removed in about 2-3 weeks after surgery, depending on how I heal.
Wonderful. Oh yeah, and NO SHOWER while the drains are in. For 2-3 weeks. EVEN better. So yeah, I won't be leaving the house for weeks.
I asked about limitations while recovering. I can pick up cups and dishes and things like that, but no heavy lifting. No laundry or cleaning or things like that. Even better.
Then, I asked about the overall total recovery. When will I be completely done. When will I be done healing, have the nipples and just be done. She said it could be up to a year or even longer. A friggin YEAR! Seriously? I was looking forward to July! This might be ALL of 2013, and maybe into 2014? Really? :( That just sucks!!
Last night was rough. I think the reality of seeing those pictures just hit me and hit me hard. Plus, the time involved, a 2nd unexpected surgery, added recovery. All of it. Just hit me.
We got back from the appointment fairly early before going out. I had the news on (while I started writing this). Channel 4 had 3 reports in a row. A Dana Farber protein study, a breast cancer study about eating fruits and veggies & how that will slow tumor growth (not in my case), then a teaser for the 11pm news on a new breaking technology in Boston for how breast cancer is treated. Within 5 minutes. A couple of hours after seeing the "results" pictures.
Jim was in a room in the back of the house on his desktop computer. I was in the bedroom on the far opposite side of the house, bawling my eyes out. I finally asked him to come out and he was great then, but I was already there. It was hard to shake. I'm not sure I have yet.
Last night we did our usual thing at the 99. Our bartender Kevin is the best, but they all know us there at this point. I guess in a way its our Cheers. We walk in and everyone says hi. If the bar is full, Kevin will point out who should be leaving soon, so we can hang out in that area to wait for a spot to sit.
Jim's friend from his gym met us there with his girlfriend. It was the first time I met them and they were really nice. I was glad I asked before they got there, but Jim said yeah, they know. That's always hard. Seeing people who know, who I didn't tell. There is always an elephant in the room at that point. They know, I know they know, but no one says anything about it.
I drove last night, Jim had a few of Kevin's drinks (Kevin has a VERY heavy hand!). They were chatting away, telling crazy stories. I remembered hearing one of them that Jim ended up telling, from while he was on vacation years ago. In general, its a funny story. But it was about going bald and what peoples heads are like without hair. So Jim and his friend were talking about head shapes and what they would be like without any hair at all.
That was too much for me. I know that Jim didn't mean ANYTHING at all by it, but I had to lean over and say, "not a good conversation for me right now". He immediately changed their conversation. On the way home, I asked him if he could be mindful of how different topics might impact me right now. He knew right away that I was talking about the bald conversation.
The plastic surgeon appointment wouldn't leave my head. I kept seeing those post surgery photos in my head, with the 4 inch scar across each side, without a nipple. I was just in a bad place. It was not good. I couldn't stop. I kept talking about all of my fears. I had no filter and each and every dark thought came pouring out of me along with the tears that were streaming down my face.
I remember saying I hated this year, since my 38th birthday. September 9th. On September 27th I had my wrist surgery. I've had biopsies twice. I'll have the "harvest" this month, the mastectomies, then the removal of the expander for the permanent implant. 4 actual surgeries this year, plus biopsies and chemo. Yeah, this year friggin SUCKS.
It ended up being to much for Jim. He got up to go in the back room. That was too much for me. I lost it. LOST it. Sobbing hysterically to the point I started hyperventilating more than once. I'd finally be able to breathe again, then it would start up all over again. I went out of the bed room and yelled for Jim. He told me to calm down and just go back to bed. He was going to watch a movie.
I was a mess. In my mind, I thought he was done. Not just that he couldn't take it in that moment, but that he just couldn't take anymore of it at all... of me, of dealing with the cancer and appointments and the surgeries and recoveries and fertility and one thing after another. I thought he wanted out and that he want to leave me. That pushed me over the edge.
Right now I can see the spot on the floor in the hallway where I just collapsed, sobbing out of control. The hyperventilating got worse. I couldn't breathe at all and I felt like I was going to throw up at the same time.
I walked out of the house and sat in the middle of the front porch with my head between my legs, trying to breathe, gasping and still sobbing. The fresh cold air helped and slowly I ended up calming down a little and my breathing finally started to get back towards normal.
Within a few minutes, Jim realized I wasn't upstairs anymore and went looking for me. I'm not sure what he thought when he saw me. We don't live in the best area. It was midnight. I was outside, in pajama pants and a Tshirt, in socks, sitting in the middle of the front porch on the floor, still crying, with my head bent down holding it in my hands.
He got me inside and back into bed. When I calmed down a little more, I was finally able to tell him where I was in my head. He just put his arms around me, told me it would be alright, that he loved me and wasn't going anywhere. All he had wanted to do was go in the other room and watch a movie.
I'm still not back in a great place, but I'm not as bad as I was last night. I know that some days will be easier than others, some hours will be darker than others. Last night was bad. Bad.
When I first got the call saying cancer, I was a mess. Last night, I was right back there, but almost worse. It was the first time since October 29th that I was that bad.
I've been trying so hard to stay positive, be in a positive place and think good thoughts. I have doctor appointments almost every day. My expectations of what is going to happen keep changing. I think I'm okay, that I've accepted things, then something else comes along and throws me for another loop. That was yesterday.
The recovery and reconstruction process was more than I expected. A year? Another surgery? 3-4 inch scars across my chest? While I'm going through chemo? Drains in for 2-3 weeks? I can't control the reconstruction? I get what I get basically. It was just too much at once. Toss in the fertility drugs that I'm taking with my hormones ALL over the place.... I guess it was bound to happen.
Maybe now that it did, I'll be in a better position to handle it when it happens again. Because I know it will. Its not if I will have another bad night, its more about how long I will go before it happens again.
Sometimes it is really hard. I know that other people take my lead. I try to be positive and put on a happy face, spinning all the positives. I feel fake. Yeah, I believe in all the positives. I know I'll be okay when all of this done. I know they will get the cancer out of me. I know I will get through chemo. I know I will get through this.
But I am still afraid. I still get overwhelmed. I know there are unknowns and I'm afraid of those.
I don't share those with most people. I fake it. I try to be positive for everyone else. Sometimes I feel like I'm comforting others. And that gets me mad. I'm the one with cancer! Why am I trying to make other people feel better? Shouldn't I be the one who needs to feel better?
Most people get it. Between books and blogs I've read, plus messages I've gotten, I know that I need to be okay with being selfish and thinking about me and what's best for me. I've been trying to limit what I let in right now and what I expose myself to for different influences. I don't need any extra stress. I don't need any extra drama or negativity. Some people for whatever reason, can bring that out for me. I have to limit my contact in those situations.
I'm not afraid to speak out when things bother me, which is good. But it is SO hard to ask for help. I hate the thought of being dependent on anyone for anything. I don't want to be weak. Maybe I'm afraid of being judged, I don't know.
Work pushed me over the edge this week and on Monday I am going to have to have a very honest conversation with my boss about what I can and can't handle right now. My workload may need to be readjusted right now. I'm mentally exhausted.
This week was tough, just being home so much. I NEED to keep busy. My old apartment is done. I don't have to do anything over there anymore. With the fertility drugs, I can't do any exercise right now. I'm trying to watch what I'm spending, since retail therapy got a bit out of control for a while. (4 new Alex and Ani bracelets, 2 FUCK CANCER hats, several sweaters, a few pairs of jeans....) so going out to stores is not the best choice right now.
I was home. Monday, Tuesday and Thursday nights, while Jim went out to his classes at his gym, I was home with the dog. On the sofa, watching tv or online or reading, in pjs by 7, not moving for the night. NOT good for me.
I NEED to be busy. I NEED to do things. Sitting home is just way too much for me.
That's one reason why I can't wait for the "harvest" to be done. At least I could get out and get to kickboxing a couple times a week to do SOMETHING. Plus, punching and kicking the hell out of something makes me feel better.
The doctors, other than the fertility one, said I have no restrictions until surgery. And from the research I'm done, the more I do now, the better shape I'll be in for surgery and the better and faster I will heal.
At the same time, keeping busy, exercising and being active are all good for me mentally. I need that to keep my sanity. If I can keep doing that up until surgery, I will be in a much more positive place going into it. Which is what I need to do for an even better outcome.
This week will be another challenging week for me. I still can't exercise, and I have NOTHING again for the 3 nights that Jim's at the gym. My friends are busy with work and the holidays and their own things.
I'm trying to stay positive and I'm trying to get out of where I was mentally last night. I know I'm slightly better right now. The gloomy weather doesn't help. I can't even go for a walk right now.
Hopefully I will find something to take my mind off of things. I need a good, happy distraction. I'm hoping I can find something within myself to snap me out of this. Writing it all out definitely helps. I know I can't keep this all in my head. That's how I got to where I was last night.
But that's an issue too. I do get to dark places in my heads. It happens. I try to share it. But it can be too much for other people. Last night it was too much for Jim. I know that just reading this is too much for some people to handle. And even though on one level I know I HAVE to be selfish and only worry about me right now, I don't want to be a burden on anyone and I don't want to bring anyone else down.
I've even censored myself writing here... just so I'm not putting too much on people reading it! How crazy is that? Even in the place where I want to just vent and get it all out, I censor and hold back, thinking of how it will impact other people who are reading it.
Three good things with upcoming appointments this week. Social worker Allison on Monday and shrink (psychosomatic psychiatrist) on Wednesday. Then a call with my case manager at my health insurance on Wednesday night.
I haven't held back with Allison at all. VERY honest with her about everything and she gets it. I'm glad I have all of those resources in place.
Ahhh.... guess I had a ton of my mind today that I needed to get out. I know that keeping this blog is good for me. I know I NEED to get things out of my head and writing it out helps me find clarity with everything too.
Even as dark as some of the places get, I still know how lucky I am. I really do have a ton of support. My friends & family are great. The cards, texts, emails, FB messages mean so much to me. I appreciate it all so much. Things like that help me when I do start to go to the those dark places. So PLEASE, feel free to keep them coming! :) I can use all the support I can get.
I have been saving messages, texts, emails and cards. I keep some cards in my bag and some at home, to have them around me. I have a folder in my email set up to save emails I get for my personal and for my work email. When things are tough, I can read those as a reminder of the support I have. So thank you! Please know how much it all means to me and how much it helps me get through the dark days.
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