Tuesday, June 28, 2011
Had hyperbaric today and my left ear would not cooperate! Wouldn't pop with the pressure so had intense pain. Tried a bunch of things but they wouldn't let me continue today since they don't want my eardrum to rupture. So I was pulled out. My eardrum is a little stretched and bruised and is most likely didn't cooperate since I am getting over a little cold/allergy thing. So another little set back. If it clears by tomorrow (my ear is all plugged and I can't hear well) then I'll rejoin the hyperbaric crew tomorrow, if not then I'll need a few days off which isn't the end of the world but just another setback and delay to normalcy.
Wednesday, June 22, 2011
Hyperbaric this morning then off to see the surgeons. Breast surgeon said that everything from her standpoint is good, all tissue remove was clear of any signs of cancer and I don't need to see her again!
Saw plastics, plan for doing the full 20 hyperbarics so have 9 left and will finish on my birthday! They will do it mornings during the week, no weekends, no holidays, and not July 5th. He seems to think that doing this will make everything back on track. We wont start any expansions for quite a while. He wants everything to be completely healed (no scabs or incisions that are even slightly not healed).
Got the drains outs! YAY! I have massive anticipatory pain anxiety and the surgeon was great and super supportive and it didn't hardly hurt at all!
And so we move forward!
Tuesday, June 21, 2011
For those of you who know me, you know that I am busy! I hate sitting still, I'm not a huge TV fan, we typically have plans or go to the park or do something fun every night, just busy. Even when we aren't doing anything, we are busy. So as you can imagine, being stuck on a slowdown, take it easy isn't easy for me!
The past two days I've started feeling a bit better, more normal. So today went to hyperbaric and then decided that Jared and I should attempt to go out to lunch. Gotta eat right! So ate at famous Daves which went well. Then stopped at Target to grab a couple things, Jared was just going to run in but I decided I felt good enough to go to....
Got home... CRASHED!!!! So tired, way over did it. Took a 2-3 hour nap! Had a friend stop by this evening, and then snuggled on the couch with miss AJ.
And now since I had a big nap, can't sleep!
So note to self.... feel good... keep taking it easy. One outing not 2!
So depending how things go at the doc tomorrow, I'm hoping to ride with to watch AJ's soccer practice tomorrow.
Still can't lift anything, or even get our fridge door open for that matter so can't be home alone for long and can't be alone with the kids at all, so last night my dear friend Lindsy came and babysat Addy, JT, and I so that Jared could go play frisbee for a bit. Still having a huge outpouring of support! Sorry to all of you who I haven't emailed, called, or texted back. I'm working on it! My eyes are kind of goofy right now so I can't stand being on the computer of phone much and well phone calls seem to signal the kids to both melt down! So I will get back to you! Just might take a bit!
Thank you to EVERYoNE for all the prayers and thoughts! Keep them coming!
Monday, June 20, 2011
OK, so havent posted in a while.... So made it through surgery, was in for 2 nights, did ok. They Hysterectomy part was cake! No issues, no real, pain, etc. The mastectomy part went well. The expanders..... um not so fun. Lots of muscle spasms especially since I am pretty tiny, was pretty flat, and the expanders are under my not so strechy muscle. It was hard for them to get the expanders in but in they are.
If you remember, I chose to do nipple sparing basically just so plastics had extra skin to work with with the intent that I would most likely remove them with the surgery later when they did the tissue expander/implant exchange a while down the line. The day of dismissial one nipple was darker... not good, means the skin from my radiation is not getting enough blood flow thus causing some necrosis. They dismissed me with an appointment after the weekend to see plastics again.
At the appointment they removed 50 more cc's (which by the way was much more painful than I anticipated!) out of the implant (they only had been able to put 75 in to begin with because of my radiation)... so down to 25 cc's basically nothing but the expander takes up quite a bit of space. We decided to do hyperbaric for 10 days to see if we could improve blood flow. So I was readmitted for 4 days, did 2 treatments a day for the first 3 days then went home Thursday eve after hyperbaric number 5. I did treatment number 9 today and tomorrow was slotted to be my last one. Well after talking with the hyperbaric doc, he's thinking since eventually I'll need a second surgery and they want my skin to be as healthy and plyable as possible that ten more treatments (so a total of 20) would be recommended. Then when I had my second surgery, they would do a couple treatments right after surgery as well.
The dark necrotic area is smaller and the surrounding skin looks much better. Most likely the necrotic skin will just slough off.
So a little unsure of what the future plan will be. I see plastics and the breast surgeon on Wednesday so hopefully a bit more of a solid plan. At this point I'm feeling a bit better, pain is better under control, still have the stupid drains in so hoping that plastics will let me get them out soon! They aren't putting out much but he wanted to keep them in for hyperbaric so hoping he'll take them out on wednesday and let me do the rest with out them!
Otherwise we are doing ok, a little rough at home with the two little ones and not being able to snuggle, hold them, and play pretty much sucks. Hyperbaric is wearing on me. I bounce back really well from surgery and wasn't planning on having issues. But with the set backs and coming back in every day for hyper baric (minus weekends/holidays) it makes me frusterated and has brought back all of the emotions of being a cancer patient again. I was sick 16ish years ago and now it feels just like yesterday, going through the motions, living according to doctors appointments and treatments, and missing out on life. So what was an elective (sort of) procedure, the emotional aspects of complications are wearing on me. Not being able to do everything with the kids is the hardest, especially knowing that recovery will now be longer than my initial 6 week plan.
I'll be talking to plastics about shortening the long term plan of expanding to a full B and see what other options there are and if being smaller would be a shorter process or not. I'm guessing most will related to how the rest of the hyperbaric goes.
I still am very glad that I have done this just haveing a more emotional journey than I expected!
I'll post more after the appointments on Wed! Say prayers for a good visit!
Friday, June 10, 2011
Well I made it through surgery! Yesterday was a long hard day but making progress today!
Surgery was around 8 hours long and then an additional 3 1/2-4 hours in the PACU. Everyone was super nice and really listened to my concerns and addressed them. The staff were very reassuring. My friend Mary who works in the PACU even came and found me prior to surgery in the preop area to offer hugs and support.
Surgery went well, no evidence of breast or ovarian cancer which is amazingly wonderful news! Still waiting for one more specimen to read out but otherwise all looks good.
After surgery I had a crap ton of pain issues so stayed in PACU for a while and then went up to the floor. I have had amazing nurses and even the anesthesia person stopped by today to see how I was doing since I was so scared and had concerns about anesthesia, she wanted to make sure that everything went well and that I didn't have any recall or paralysis issues this time.
Today has gone fairly well. Really feeling good sometimes and muscle spams from the expanders at other times. I got 2 PIV's removed, the catheter out, 4 walks in already, eating real food, and able to move around pretty well slowly!
Had a few visitors which was really nice. Friends are such a good distraction! Jared and my mom were here all day, then meena went to get the kids from daycare and feed them and now Jared has gone home to the kiddos and meena will be heading back hopefully bringing me dinner!
Well its hard to type with a pulse oximeter on my finger so I will write more later.
Thank you for all of the kind messages, emails, texts, and prayers!
Wednesday, June 8, 2011
Addy and I had a wonderful Addy-Mommy day! That was such a good idea if I do say so myself!
Had my nuclear medicine injections today.... um ya, don't recommend that to anyone! Leaving Emla on for only 20 minutes really not even worth it. 4 injections on each side for a total of 8 injections and they were the most painful injections of my life... worse even then when Jared was giving me shots! But the pain was short lived so I'm over it.
So tomorrow is the big day, still need to call in tonight to find out my check in time.
Please keep the prayers coming tomorrow!
Tuesday, June 7, 2011
I just have to say that I have some amazing friends, family, and coworkers! I've had an outpouring of support and love the past day. Everyone is super supportive and wants to make sure that I take the time I need for recovery and are willing to help in any way. People wanting to make sure Jared knows if he needs anything that there are people here to help, wanting to watch the kids or help pick them up if needed this summer, people saying extra prayers.
I had two more friends stop by tonight with more meals to freeze so our total frozen meals (including the 11 that I made) is up to around 22ish! I'm hoping to not have to cook for as long as possible so feel free to keep cooking! No meal will be turned down :)
I stopped at a few more stores on the way home from work and found my zip up t-shirt hoodies! Shopko of all places. They aren't the best quality but they should work! And since they have a ton, I can send Jared back for more colors if I end up needing them for a while!
Today was my last day at work now for a while! I took the day off tomorrow to spend a mommy and me day with Addy. Our plan is to go to an indoor amusement park in the morning for a couple hours, shop, do lunch, and then head back home. She's going to be THRILLED! I got our discount tickets online tonight and lucky for me since she is only 3 her "chaperone" gets to ride FREE! So it should be a fun day.
Then tomorrow after noon, I need to have my labs drawn for a type and crossmatch in the random chance that I would need a blood transfusion. Seeing as I had literally hundreds and hundreds when I was sick before, I'm not worried about that at all. And I have my nuclear medicine injections at 3 pm which I am SO not looking forward to but I'd rather have everything checked out! They do sentinel node injections and basically during surgery then they scan to see if my lymph nodes took up the isotope. If they did, that would be indicative of possible breast cancer. They don't expect to find anything since my mammos and MRI's have been negative but they check before surgery so that if anything is going on that they can remove the appropriate lymph nodes at the same time as surgery. It's pretty standard to do it.
Meena will be coming tomorrow night as well to help with getting the munchkins to daycare in the morning and Addy starts soccer tomorrow night so that should be fun as well!
Thank you all for your continued support and prayers!
Monday, June 6, 2011
Things are all coming together... I've got most of the house well cleaned, although with a 2 year old and a 3 year old, clean is subjective! I made 11 meals this weekend to freeze and have had a few amazing friends bring over a few more meals! Our little freezer is starting to look a bit fuller! (is fuller a real word?) I've got daycare drop off/pick up arranged compliments of my parents. And have random offers from numerous people to help in the coming weeks as well (and to give Jared a break:).
I've got a fun day planned for Addy and I to have a mommy and me day on Wednesday. She doesn't do well when I am away and even though its only a night or two, I know it will be hard on her. So hoping to fuel up on mommy time! I'm hoping to not tell her where I will be but to tell her that I will be gone for a couple of nights and try to avoid telling her where. We will be avoiding the "H" word...(hospital) or telling her that I am sick because I don't want to scare her. Being three she understands and processes way more than a normal 3 year old should! So when I get home then we will talk about having surgery, having owies, and being careful around mommy. I've had my sister and a friend both live with us for a few weeks at different points over the past year and a half from having surgery so she gets that. So if by chance you see Addy before I do, please don't talk to her about details or tell her anything that will scare her. When I'm away she needs lots of reassurance that mommy will always come home and will never leave her. Last time I left for a while, she was super sad and scared that I wouldn't come home, so trying to minimize that as much as possible. And with Meena and Papa here, they will be a good distraction!
Just a few things left to get done before Thursday! If anyone knows where I can find zip up short sleeve hoodies, let me know! I've scoured the town and can't find them anywhere!
Thursday, June 2, 2011
Finally some answers and a tentative plan!
Met with the plastic surgeon today who was super nice and had already read up on my history and talked to the other surgeons about their plan (always a good sign when they know all about you and take the time to read up on your issues). One of the first things he said was, "it looks like you've already been through hell and back" when starting to talk about my history. He gets it. He said that they are seeing a lot of people who had sternal radiation for lymphoma in their teens now getting breast cancer and since I had full lung radiation for my Ewings Sarcoma I probably have a higher risk than them. So good to really confirm that I am doing the right thing!
Seeing that I am small, most of the reconstruction options aren't a viable option for me since I don't have extra fat to use for flaps etc. And because of my small cup size and radiation, doing a direct implant isn't the best option either unless I want to be smaller than I currently am, which I'm not sure is even possible! So an expander it will be with an alloderm graft as well. My left rib cage has pectus excavatum basically I have a bent up rib cage that is all misshaped. This limits my options as well as I am most likely missing an additional muscle that they use for the surgery, hence the other reason to use the alloderm. The alloderm is a human or pig (gross I know) tissue matrix (the real cells are all sucked out somehow and you dont have rejection issues, your body eventually reabsorbs it and lays down strong tissue on top), this will allow them to place the expander (and eventually implant) under the Pectoralis Major muscle and use the alloderm to hold it in place on the under side. The expander will be placed and filled partially full with saline.
Then after surgery about 2-3 weeks later, I will start having the expanders filled every 1-3 weeks depending on how my skin tolerates the stretching (radiation makes it more fragile so we may have to do it more slowly). Once we get it to where we want to be (hopefully a full B cup), then they will over expand it to be a C cup. They then wait 6 months to a year to let the muscle and skin fully stretch and relax. After everything is ready, then they will go in and switch out the expander for a real implant (silicone or saline). The over fill the expander so that there is room and so that the real implant isn't perched high up on your chest but in a more natural position. The expanders aren't the most comfortable thing and are much harder than an implant will be and won't feel real natural but then when you get the implant its much more normal and real feeling.
For now we are going forward with the nipple sparing procedure. Mainly because he needs the extra skin to be able to fit everything in. If I want to remove the nipples later, they can do that at the time of the implant switch out so I have some time to decide what I want to do, which is kind of nice!
So we are moving forward! One week till surgery day!
I've got a ton of stuff to get done so hoping to deep clean the house, get the kids summer clothes out and make sure things fit, get stuff ready for them to start their new schools, cook meals to freeze, clean out my car, and hopefully make it to a graduation party! Jared is busy on Saturday so hoping to do a lot tomorrow, Sunday and during nap time! I also need to get a couple of my tomato plants staked or caged and do laundry!
I'm anxious for surgery to be done but super nervous. I hate anesthesia... its kind of like my flying fear... I don't like having someone else completely in control of my life. I have the same feeling that I get when I know I have to fly... panicky and scared! But I trust my physicians, they have all reassured me and each of them has said that if anything was looking like something was wrong (bleeding etc) that they would stop it and close me and finish the surgery later so as not to put me into any jeopardy. So they are all watching out for me. I will be talking with anesthesia in depth the morning of my procedure. I had an issue with one surgery where I woke up before the paralytic had worn off and was still intubated, couldn't move or open my eyes but could hear everyone around me and thought I was dead. So I don't want that feeling again and was told that they could reverse the paralytic before they wake me up so I need to ensure that happens!
Everyone has been super supportive. I've found a few others who are getting ready for their surgeries, one is even here in town! And have found a network of other pre-vivors!
This surgery won't define me but it will be a part of me and a big part of my life for the next year until reconstruction is completed. My hope is that once I am complete that I can move on, live my life, and leave behind the fear.