Surgery Complete!

Here I am sitting at home in bed. My final surgery to this long ordeal is finally complete. Yesterday I underwent a tissue expander to implant exchange and also an oophorectomy. Today I have managed to get around. This surgery recovery is by far much easier than the double mastectomy. I can't say that I am pleased with the results yet, as there is still lots of swelling in the chest area. But the boobs are much softer and I am thankful for that.

Surgery check in time yesterday was at 10. I got into pre-op around 10.35. I had to scrub down and take off all of my clothes and don a lovely hospital gown. Then it was a waiting game. My surgery was scheduled to begin at 12.15. Um... they were more than hour behind schedule. I got a scopolamine patch to put behind my ear to help with nausea. They tried to get a line in my. They poked once. Then I told them to get an ultrasound. The anesthesia doctor put a line in my arm using the u/s. However, just before they were going to take me into that room, the vein collapsed or something. All of a sudden my arm started to hurt, and hurt bad. The tried to get some blood return but didn't. They stopped the IV. Then the nurse anesthesia started one in my hand. That felt so much better. Then she gave me sleepy medicine. I said goodbye to Brad and I was off. I made it to the OR feeling good. I even moved from the gurney to the table. I was talking with the people in the room, making friends. The last thing I remember is having an oxygen mask placed over my nose and mouth. I was gone.

Dr. Munro was the first to do the surgery. Hers was the faster one. Dr. Thaker wanted to go last because she wanted to take her time with my boobies and make sure they looked okay. So apparently the surgery took longer than expected. Dr. Munro got my ovaries and fallopian tubes out okay. She didn't find any abnormalities in that area, so she didn't touch my lymph nodes. Then there was a period of time that no one was doing surgery on me. They had to redress me with the curtains and drapes. I'm led to believe the second surgery took about 3 hours. I woke up in recovery around 710p. I was in and out during that time. I finally came out of it around 730. At around 8, my recovery nurse, Linda, called Brad and he came down to see me. We hung out for about 2 hours in recovery. I had apple juice to drink as well as saltines. After successfully going pee, I was discharged. I wanted to come home to rest.

I have JP drains, which means I got the highly cohesive silicone implants. I am happy that I got these. Today I am sore in my chest (down my cleavage) and in my abdomen. But I have pain pills and I am taking it easy. I wish I could do more, but I want to heal. Well, I am a bit tired, so I am going to go.

At last!

The twins will be here tomorrow!

Tomorrow morning I have my tissue expander/implant exchange... as well as my oophorectomy. I am so excited for this surgery. This afternoon I had my last meal. I just finished taking the magnesium citrate which will help me clear my system out (hint... go for the flavored stuff. The cherry wasn't bad.). For the next 6 hours or so, I will be on a liquid diet. Luckily I gorged on Taco Bell! Yummy. If I am not going to be able to eat for awhile, I want it to be full of calories and not good for me. Hee hee!

Tonight in order to prep for my surgery, I have to shower with the soap that surgeons use to disinfect their hands. In addition, I have to shower with the same stuff tomorrow morning. My wake up call... around 4a. I have to be at the hospital at 5.30. Am I nervous? At times I am. But I am excited... new forever-perky-boobs and permanent birth control. Can't beat that, right?

Dr. Thakar is going to use new implants. The implants are called cohesive silicone implants. They are nicknamed "gummy bear" implants. Europe has been using the implants for awhile now. However, they were just approved in the last few years here in the U.S. CLICK HERE for more information on the implants. Dr. T is going to put them in me and see how they look. If they look good, there they will stay. If they don't look right, we'll go to the original silicone implants. The cohesive ones are great because they feel like breast tissue. There's no liquid inside the implant to move around. She says that it looks better on women who are think like me. There's less "rippling." They also last longer. The only bad thing: she'll put in a drain if she uses the cohesive implants. So I hope that I come out of surgery with drains. :)

After my surgery, I will wake up with nothing around me... meaning I won't be bandaged up and I won't have a bra on. Nice.

Nothing else to report really. I just can't wait to feel a little more comfortable. I am looking forward to having the tissue expanders out of me. Until next time...

An Update

Wow! It has been quite awhile since my last post. A lot of things have happened since the beginning of March which was my last post.

So here's what's happening in my life of cancer.

March I finished up with physical therapy for lymphedema. I finally figured out how to keep it at bay. Then on March 13 we left for Florida for the celebratory cruise. It was really nice to get away from Oregon. I liked the change of scenery. We took a red eye to Ft. Lauderdale and thanks to my good friend, Anne, she helped me get our flights there for cheap.

We got to spend some time with my grandmother before boarding our ship. We also got to see my cousins and my uncle while we were there. We had a great time... lots of visiting and lots of just relaxing. On Saturday March 16, we boarded our cruise along with my mom, dad, Karen, Vern, Deanne, Vince and Lilly. So we had a party 11. The trip started off awesome. We had a great room in the middle of the ship. A nice bed and the girls had their own. A great balcony and a view of Grammy and Papa's room a floor above us. But then it all went to heck after our first port - St. Maarten. I will post separately on that. It's a long story... but a quick overview... routine check of our stateroom turned up bed bug eggs - ewww! And then we had to change rooms and get our clothes laundered. It was terrible what transpired after that. We were very eager to get off of the ship following that.

April: April was a good month. I had two doctor appointments. The first one was with the new gynocologist oncologist, Dr. Munro at OHSU. She was great. I really like her. We talked about the surgery and statistics of what will happen after I get my ovaries out. She said that my chances of getting ovarian cancer drop to standard population. That's awesome odds. We also outlined what will happen during surgery. I told her she is not to take out any lymph nodes in that region. She said that if she sees anything she normally takes out the pockets of nodes. I said, no. I absolutely refuse because I already have lymphedema in my arm and I don't want it in my leg as well. I like the fact that she respects my wishes. But I had a really good vibe about her.

A few days later, I had a follow up with Dr. Naik, my surgeon. I was in and out. Everything is looking good with there. No new lumps or areas to be worried about. We also talked about the gynoc. She said that no one has real issues with Dr. Munro but some are not so certain about Dr. Moffitt. I am sure Dr. Moffitt is a good doctor, but I just didn't like her bedside manner. Very abrupt and not empathetic.

Now that I've picked out my gynoc, we can now schedule the final operation and put everything behind us. Trouble is, is that I have two doctors to work with. Dr. Thaker operates Tuesday, Wednesday and Friday. Dr. Munro does her operations on Thursday. Ummm... see a scheduling conflict there??  Ha. So I got a call in late April with the date of May 23. Holy cow! But I want this done and I have to do it then. My surgery was set for the afternoon... 2.30p with check in at 11.30a Then a day or two later, I got another call stating that there was a conflict in scheduling. And so now my real surgery is first thing in the morning. I have check in time at 5.30a with surgery scheduled to start at 7.30a. I'd rather have that surgery time. I won't be able to eat after 11.30p the previous day. But that's okay. I like it because I am not supposed to eat any food. Only clear liquids. I'm going to be hungry. So it worked out for the better.

This month has been busy with doctor appointments. Dentist on May 1 (no cavities for me or Amelia!). Yesterday I had a follow up appointment with the radiation oncologist, Dr. Marquez. Everything is looking good there. I kept getting compliments on my hair. They all say it's really cute. Dr. Marquez asked where I was in my surgeries. I told her that I have my last surgeries scheduled for the end of the month. I'll be getting the tissue expanders out and the implants put in as well as the oopherectomy. She said that will be good because it will save money and time (she mentioned that anesthesia is the most expensive in an operation). We discussed Dr. Thaker and how she just saw her the other day. She said that Dr. Thaker has new implants and was throwing them around in clinic. She said that they feel like gummy bears. I said that YES, I know about those. They have been around for awhile in Europe and they are just catching on here in the states. She said that I am going to love having the TE out. I cannot wait! I will feel so much more comfortable. We also talked about Dr. Moffitt and Dr. M also said she's got an interesting personality. That's why I love the doctors I picked. So truthful. Dr. M also asked if I saw my Radiation Therapists - Dan and Linea. I said yes, I did see them. I got a clean bill of health and I left. I don't have to go back to see Dr. Marquez until December. That seems like ages away.

I did see Dan and Linea. They sooo remembered me. We chatted for quite awhile. I also saw Andrea and Rebecca is pregnant! The front desk receptionist also remembered me. She said she saw my name on the schedule and thought "I know her." So we chatted a little bit. It really nice because these visits are social visits. Dan says I have to come see him more often. I said I will - when I am around.

No doctors appointments today as I have jury duty today and tomorrow. Next week I have my pre-op appointment with Dr. Thaker. We'll go over what kind of implants I want. I've got a pre-surgery anesthesia appointment on Thursday with blood draw. Then on Friday I have a ulta-sound appointment so they can take a look at my ovaries. Oh yea, next Tuesday, Elaina has her first dentist appointment. Then it's surgery day! Mom is flying out to help out, as I will be out of commission for a little while and will need help with the kiddos.

Day 258 - Peel & Heal

Sorry that I haven't posted in awhile. Following my last post, I got busy with trying to get ready for a long weekend trip. Yay!

Last weekend the family went to Nevada for my Dad's wedding. We left for Reno on Thursday... so all the days leading up to it I was busy packing and doing last minute stuff. Then we were gone Thursday, Friday, Saturday (wedding day!), Sunday and then back Monday. Then it was just trying to get back into the swing of things.

So here's what's happened in the last 10 days. First off, my skin is starting to peel and heal from radiation. The part where the blister was under my arm is now nice and pink... like a good healthy pink. Before it was awful pink - like hot pink. Now it's a nice healthy light pink. Each day my crispy skin is peeling. The bits and pieces of skin look like Thanksgiving Day turkey skin - tan and crispy. I'm not too sure about taste, though. Not going there. In addition to the peeling under my arm, the skin right under my boob is also peeling in big crispy chunks. The rest of the breast is doing good. It's turning tan and then peeling like a normal sunburn would. There's no discomfort anymore. I was putting silvadene under my arm last week. But now I am putting lotion all over to keep it moist and not dry. I do believe the worst is over.

Next week (Tuesday) I have my two week check up with Dr. Marquez. I am certainly impressed with the way things are healing and I have a feeling that I will be able to get my tissue expander exchange surgery done this year. I want it all on one deductible. Anywho, I'll let you know how that appointment goes. My arm did get a little stiff because of the peeling under my arm. But I am back to stretching it every day. Doing my finger crawls along the wall and such. I am just happy that I am able to sleep on my left side again.

I finally got an appointment with my replacement oncologist, Dr. Chui. My appointment is October 19. So that will be good. I really want to start Phase 4 of my treatment.

As for work... it's been crazy busy. We just went through shift bids again. I got my same shift. So I work 4a-1230p Monday through Friday. I don't like waking up that early, but hey, it's a weekday shift.

Other than that... not much else to update you all on.

Just Congratulations Dad and Karen. We enjoyed the three hour cruise! Can't wait to cruise again next year!

Day 236 - Radiation #20: The price of shoes

Today it was a good radiation day. I say that because LINAC 1 was having issues again. I got to OHSU and checked in. Dan was out in the waiting area talking with another person when I got there. I wanted to check out the magazines, as the magazines in the interior/dressing room waiting area were growing stale. Dan came and got me and he told me his machine was down again and the technicians were working on it. So he asked if I wanted to get some lunch. I said sure and he went to his little office area to get a gift card to get lunch in the OHSU cafeteria. While I was there waiting for him, Dorothy was there (the chair of the Radiation Therapists) and said hello to me again. We chatted for moment. I asked what was wrong with the machine again. The MLCs were acting up again. I told Dan that I didn't do it this time! Well, I ended up getting my treatment today. It wasn't acting up that bad, so I got to go through rad. Awesome. While I was waiting for them to get the machine back up, I think I heard the RTs talking about me to Dorothy. I think she was saying I was a good sport and that I roll with the punches. If you guys were talking about me, then I want to say... what can you do? Things happen. It's gonna get done... just not right this second. Enjoy the moment! :)

So I got my radiation and there were no pretty pictures to be had (no x-rays today). I told him that he could skip it today because I thought Dan would be pushing his luck with the machine. Following my session, I went back to wait for Nicole, the nurse. I didn't have to wait long. She just got back from vacation and she said that she opened up her email to see a flood of emails regarding all the machines going down last week. I laughed. She took my vitals and we went to the exam room. We talked about how I was feeling (no fatigue), if I was working (no time off except to come to appointments) and if my skin was hurting. I said that yes, it does in one certain area. That is the area where the tissue expanders end and there's just skin going from the expander to the chest wall. It's near my drain scars. She asked to look at it. She said that I was red and then looked under my boob. She said it's reddest there. I said, "Oh really? I didn't notice." I thought the worst place was under my arm. Apparently it is not. So she told me that I can start putting lotion - Eucerin Aquafor - there before I go to bed. Okay. Will do. When she got done with that, Dr. Marquez came into the room. She wasn't even paged. She was early and there was no waiting for her! Sweet night! She saw my skin and agreed with Nicole. She asked how many treatments I have left... EIGHT! Dr. M said my skin is looking great and I will have no problems. I said that there's a patch of skin that's turning tan! My skin will turn tan after the radiation. Anyway, I asked if many patients get redder. She said that normally by this stage a majority of her patients are a lot redder than I am. Awesome. That's good news. I also asked about seeing a new oncologist. I wanted to ask her opinion of who she thinks will be best for me. Dr. M said you are so easy going that I don't have a personality issue (compliment). She said that I could go with either Dr. Lopez-Chavez or Dr. Chiu. Dr. Chiu specializes in breast cancer. So I think that's who I will go with for the next stage of treatment. Oh gee, I guess there's 5 stages of treatment, not four.

After radiation, I decided to go up to the Breast Center and see if Brooke was there. I love her to death. We just chatted. She said that I look great. We talked about treatment, shared pictures of the girls, talked about Race for the Cure and just nonsense stuff. It was nice. Then I went home. Other than that, nothing really new. I am tired right now from the day. But I always get tired from the day around now. I'll get my second wind momentarily!

So here's Fact #20: History time (courtesy of Rebecca)! Back in the 1920s and all the way up to the 1970s, shoe salesperson would measure patrons feet by using an x-ray fluoroscope. The customer would place their foot in a box. The salesperson would then look inside the box down at the x-ray view of the foot and the shoe. There would be another viewing port so the parent could see the kid wiggle their toes and see the outline of the shoes. In 1949, it was found the device could cause harm and they were phased out in the U.S. They remained in use in the U.K. until the 70s. OMG! Wow... according to wikipedia, the fluoroscope was a gimmick used to sell shoes with "better fit" during the Depression.

Shoe Fluoroscope on display at the National Museum of Health and Medicine, manufactured by Adrian Shoe Fitter, Inc. circa 1938, that was used in a Washington, DC, shoe store.

Day 194 - Another Fill & No stitches!

Today was my second to last fill for the tissue expanders! I was so excited to see Jason again. He's such a great PA. So I got to my appointment early... it was at one. I was in before one and I think Jason walked into the room shortly after. I was so happy I didn't have to wait. He knocked on the door and said it was him. I told him I was soooo extremely happy to see him. That I missed him. He's so wonderful. I told him what happened last week. He said he was sorry about that. Then he asked if I had any questions. I asked him what happens after my last fill. He said that about two months after the last fill, I should call and set up an appointment with Dr. Thaker and then it will be decided about switching out the tissue expanders for the implants. Awesome news. I remember talking with Dr. Thaker and she said that she would want to wait a minimum of 3 months after radiation so she can see how the tissue/skin is healing after radiation. My next question was with the implants would I be more "bouncy"? Totally legit question. With tissue expanders my boobs are rock hard and don't move AT ALL. I could run down the street and they would not move. He said that while they aren't like normal breast tissue, they will give a little. Cool. We'll see by how much. He did say that if the breasts develop capsular contraction, it could make the breast not look as nice. That's when the skin tightens up around the implant. Some other things we discussed... can I swim? Yes I can. I can swim now that I am farther away from the surgery. Yea! Not that I have a pool... but I know someone who does!

For today's fill, I decided I would do 60cc's. He got my stuff ready and then proceeded to inject the saline in. I told him to stop at 50cc's. It was getting really tight and I was worried about having issues like I did last week. So we stopped. He said that as you get closer to the end, it does hurt more. Fantastic! I'm now overfilled at 385cc's. My tissue expanders go up to 350cc's, but the surgeon always wants to overfill. I think I have overfilled. Needless to say, I am going back in on Tuesday at 11 to get my last fill before I am mapped for radiation. I was shooting for 420, but looking at my boobies and profile, I think I'll try and go to 400 or 405cc's. I'm liking the size they are now and I do realize that my breast can be smaller. I was happy with 335. In addition, the radiologist, Dr. Marquez, could request that some saline be removed during radiation because the breasts could get in the way of the laser beams. So we'll see. During my 20 minute appointment (which turned into 40 minutes), Jason and I talked. He is currently wearing a boot for his achilles issue. We talked about his recent vacation. And I found out that he used to live in Denver. So we talked about that for awhile. We talked about how we didn't miss it at all. Turns out that Jason was a paramedic before he became a PA and he's been working at OHSU since November. I told him that he's good at his job. :) Jason also took out some of he last few stitches that were still attached to me. They were the dissolvable ones that they had to tie off above my skin. They were sticking to the dermabond and I couldn't peel off the dermabond. So he took care of that. No more stitches!!

Following my fill, I wanted to stop by the 7th Floor... the Infusion Room. I saw all my favorites... Jon, Bev, Jennifer and Nicole. The girls said I was looking awesome. It was like old times. Jennifer said that she missed me and keeps looking for my name on the roster. I said that I was going to swing by last week, but due to my other appointment, I couldn't. They all said that I am looking fantastic and love my new figure. It's so wonderful to go back there and shoot the shit with them all for just a few minutes. I told them that I have a new problem... some of my shirts are not fitting anymore! Bev said, "Time to shop!" After talking with them, I went to go and see Maureen and Christine down the hall. They were both there... and so was Dr. Marquez and her resident. I said that I was ready and I was feeling good. I demostrated to her that I can now put my hands over my head and assume the "radiation position." The all laughed. Christine said that I was looking good. I told Dr. Marquez that I will see them next week and then left. It feels good just to stop by and say hi.

Now I am at home and my chest is tight. It's not as tight as last week. I don't feel like I have to collapse in bed and sleep until the morning. I can function... just not as fast. I don't like the way I feel, but I know it's only temporary. I am just excited for the next step. The next step brings me so much closer to being done with this chapter.

Day 193 - Cording & Physical Therapy

Today was a great day. After work I went to physical therapy for my arm (cording). I was doing my stretching exercises to warm up and I could tell that my range of motion was really increasing. I have been working really hard to get my arm stretched and loose. Part of the issue is my pectoral muscle. The tightness there is really hindering my progession. I mean you have to remember the tissue expanders are under the pec muscles. Every time I get a fill, it makes the pectorals tight again. So anyway, we took my range of motion and I was at 155 degrees for flection (raising my arm straight in front of me) and 130 for abduction (raising my arm to the side). When I first started those numbers were really low. After therapy each number increased by 5 more degrees. Last PT session, the first number was at 140 and the second number was at 115. I am making progress. :) The stretch that I am working on a lot is the one where you put your hands behind your head and try to stretch the arms back. The stretch reminds me of a boss leaning back in his chair and kicking his legs up on the desk.

Tomorrow I have another fill. Who knows how much of a fill I will have. I do know that it will be under 85cc's since that killed me last week. Jason is back and I am so happy for that.

Other than that, I took a nap this afternoon. Both girls didn't have a nap at daycare, so I decided to throw them in bed here and then I could take a nap too! Worked out perfectly. Today we had a "special" visitor at work. I wore a dress... which I don't do very often. I thought I looked pretty snazzy and I got to fill out the top portion of the dress which was even better. Hee hee!

Day 192 - How much does a double mastectomy cost?

I really don't have too much to post today... rather, there's no agenda. I've got dinner all made. I made an easy bake lasagne... where one does NOT have to cook the noodles before hand. :) Simplicity is key. As of right now, the girls are quiet and playing in the living room, which is also called the playroom. The house is quiet and there's no crying, screaming or yelling. Kind of nice!

Oh, I thought up of an agenda or a subject for this post... how about... how much it costs for a mastectomy? I've got most of the bills for my bilateral mastectomy. The numbers are mind blowing. I am just happy that I don't have to pay a cent of it. So here goes...
Pre-op appointment for Dr. Naik - $341.00
Pre-op appoitment for Dr. Thaker - $254.00
Labs and x-rays before surgery - $1165.00
Radiologist to read the x-rays - $27.00
Pre-anesthesia work-up - $436.00
Dr. Naik for bilateral mastectomy - $9195.75
Pathology - $1140.00
Dr. Thakar for reconstruction - $6921.00
Tissue expanders - $1296.00
Anesthesia - $2281.50
That's a total of $23,057.55! And that total doesn't even include the hospital stay which was 3.5 days... but I am sure they are going to charge 4 days worth. I am hoping that each day they called Cigna to make sure I was covered.
Another interesting fact is that my PET/CT scan cost $8721.00. Normally (under my plan) a secondary scan is not covered. And at first my plan denied the secondary scan and sent me a pamphlet of why it wasn't covered. However, in the paperwork, it stated that a secondary scan can be done if surgery was not an option to figure out restaging following treatment. That was me all the way because some of my cancer was considered non-surgerical (supraclavicular node). So a secondary letter was sent to me stating that my PET/CT scan was covered. All the hoops that one needs to jump through. Makes your mind go numb.

Here's another break down:
January - $20,910.31
February - $29,072.41
March - $30,749.39
April - $24,831.75
May - $19,133.86

I have been billed approximately $147,160 since the start of this cancer thing (through June). Interesting, huh... how the bills just continue to add up. That would pay off a nice portion of my mortgage. Ha! Thank goodness, I don't have to pay that much. I would be bankrupt if I had to.

Well that's making my head spin.
Oh, here's the recipe to the easy lasagne:
1lb of ground beef
26oz of your favorite spaghetti sauce
15oz ricotta cheese
2cups shredded mozzerella cheese
9 UNCOOKED lasagne noodles
2/3 cup of water

Cook the meat until brown (season if you wish, but the sauce should have seasoning. Sometimes I add more garlic, parsley and oregano). Add 20oz of sauce to the meat and stir. Put a few spoonfuls down in a rectangular baking dish (7"x11") so it covers the bottom. Put 3 uncooked lasagne noodles on top. Spread half of the ricotta cheese on the noodles. Top with 3/4 cup of shredded cheese. Add half of meat sauce mixture. Repeat - 3 uncooked noodles, rest of ricotta cheese, 3/4 shredded cheese and rest of meat sauce. Layer once more with last 3 uncooked noodles. With remaining 6oz of sauce, pour over noodles. Add about 2/3 cup of water to the baking dish, carefully pouring on the side of the dish (not over the actual lasagne). Cover tightly with aluminum foil. Bake 375 for 45 minutes. Remove foil, add on last of the cheese and bake for 10 more minutes. Let stand about 5-10 minutes (so the lasagne won't fall apart). Cut and serve... Makes about 6 good portions.

Day 191 - Out of Retirement...

My shampoo has made a triumphant return! This weekend I started using shampoo again to clean my hair. I have a lot of it... it's really thick and straight. I am enjoying it.

I am now down to two PT appointments a week, so that's good. Today's appointment is at 6p. So I will be leaving in a few minutes. My arm is doing better. I just need to remember to stretch it all the time otherwise it does get sore and tight again (cording issues).

Today I got an insurance statement and it said Cigna wasn't going to pay for the tissue expanders. But I am not at fault... otherwise that would be $1296 out of my pocket. Apparently, the doctor's office was supposed to get that preapproved. So if they didn't do it, then they have to eat the cost, not me. Phew! I didn't want a huge bill. Speaking of tissue expanders... after battling it all weekend, I am getting some comfort today. My chest doesn't hurt so much. However, I did have to take two ibuprofen this morning to get me loosened up and not so stiff. Maybe tomorrow I will feel good. I wonder what size I am. Hmmm.... maybe I will have to measure. :)

Other than that... this week it's PT and a fill. Next week it's more PT, maybe a fill and getting ready for radiation.

Day 188 - Another fill & PT

Physical therapy is going well. My range of motion continues to increase and doesn't decrease too much in between. My therapists say that my stretching at home is going well and they can see that I have been working really hard at it. They even said that I can go down to PT two times a week! So starting next week, I am going on Monday and Wednesdays. That is so awesome. Currently I have 8 more sessions and looks like I will continue with PT through some of my radiation.

Yesterday I got my second to last fill. I got a fill of 85cc's. Whoa! That's a lot. Today I hurt. I hurt so bad that I couldn't get out of bed. In fact, I hurt yesterday that as soon as Brad got home, I went to bed and slept. As of 4pm, I still hurt. Added to the fact I had to wait an hour and half to get my fill. My appointment was at 12.30p and I didn't see anyone until after 2p. I was late to another appointment. I was not very happy. But I got my fill. I only have 85cc's left and I think I may break them up into a 50 and 35. I am so uncomfortable right now. It feels like I have undergone a mastectomy again... the chest feels so compressed. I can't take a deep breath in and it hurts when I move a certain direction. I almost wanted to cancel my PT appointment. Thank goodness I didn't because I got Sherah who worked on my pectoral muscles. She worked to loosen them up. So I've been taking ibuprofen and even took a pain pill I got from the mastectomy surgery. All that did was put me to sleep.

In any case, not much else to report. I'm going to rest now and watch The Lion King.

Special thanks to Uncle Wayne and his family for a wonder fruit basket from Harry & Davids. The pears are delicious. Also a way to go for a friend whose tumor marker went down to 7! Yippee! And a third shout out to Bryon, who was just diagnosed with Stage 4 cancer... he's ready to kick some cancer butt.

Day 181 - Physical Therapy (cording) & PET scan

I've been busy! Busy with work, busy with kids and busy with going to medical appointments. So, let me catch you up.

Day 179 - More physical therapy. I had a physical therapy session with a different therapist, Tracy. She was very nice. She started me with warming up my arm on this pulley system where it stretches my arm up over my head. Then after that we moved to a private room. There I layed on the table and she started to massage the side of my body. Next Tracy moved to my arm. She stretched the cords starting from the arm pit - working down the arm. She followed the cord, which you could see in the crook of the elbow crease. That went on for several minutes. She would pull and twist, giving my cord a good stretch. Following the massage and stretching, I got to do the pulley again for a few more minutes and then I was done. The stretch felt good, but I didn't feel like it did any good. Tracy gave me a few more different stretches to do at home. She also told me how to stretch out the cord. That has been invaluable and is the main reason why my cording isn't has painful. On the way back to work I realized that my 4-Runner has an "oh shit" handle that is perfect for stretching while driving. So I've been stretching in the car too!

Day 180 - Testing & another fill. Today was my follow up PET and CT scan. That meant that I couldn't eat anything 6 hours before the PET scan. The scan was scheduled or 2p. So my last meal was at 8a. Anyone who knows me knows that I can become a monster when I am hungry. I left work at 12p for my first appointment. My first appointment was for my next tissue expander fill. When I got there, the waiting room was FULL. There was barely any chairs left. I sat down for not more than 60 seconds when my name was called. Donovan, Dr. Thaker's MA, called me back. He said that there must be some patients out there who must be upset that I got called back so quickly. I laughed. He told me that they were all waiting for the doctor and since I was only getting a fill with Jason, the PA, I didn't have to wait. Sweet! Score one for Holly. I do like Jason. He's so nice. Donovan was impressed with the fact that I remembered all the computer stuff he had to enter and ask. I answered all his questions before he even said anything... no medication change, pain scale, etc. Then he gave me a gown for me to change into. Jason came in and I asked him how he was doing. He just had surgery to get some stuff done for his achilles tendon. Jason had surgery in April and it wasn't healing correctly, so he got it taken care of. He even showed me a picture of it. Lots of stitches... ew! His wound looked worse than my wound from the mastectomy! In any case, we were going for 100cc's this time, but we stopped at 75. He thought that my skin wasn't responding well enough. He kept poking it to see if the color came back or if it stayed white. Then he moved over to the right boob. When I asked him why he was poking me, he told me that he was seeing how well the skin was responding. He had some concern, but when he poked me again, the skin was doing okay. Glad I stopped at 75... it was getting really really tight. When he was done, I asked him if I could schedule my next fill on Wednesday. He said that's not a problem. The general rule is to fill and then wait three days before the next fill. The reason: the skin stretches and then it needs some time to rest and recover... more like me. I need to recover! Ha! Nevertheless, the next two weeks I need a fill of 85cc's in order to get to my goal! Next week Jason won't be there, so who knows who I will have. Following my fill, it hurt to move. I felt so stretched.

Next on the list was my PET scan. That was scheduled up on the hill. For my tissue expander fill, that was at the Center for Health & Healing. I had to take the tram up. I got there shortly after 1p. I thought maybe if I got there early, I could get in early. Um, no. I read a magazine, some of my book, and even fell asleep. At 2:20p, I finally got called back. If you remember from one of my first posts, the PET scan takes about an hour of prep. First they have to get an IV in my arm. I told the guy that my right arm is awful for veins. So Matt, called IV therapy and then put warm packs on my arm to try and get a vein up and out. He couldn't. So good thing he called IV therapy. The lady came and got a line in me almost right away. In the meantime, they were getting me set up for the CT scan. I told them I couldn't have the IV contrast and that they had ordered the CT scan without contrast. They asked if I could take barium instead. I said sure as long as it wasn't the IV contrast. Then Amy came in! She was the one who did my first CT! I was so excited to see her. She is awesome. She told me that it's so nice to come into a room and see a smiling face. So she took my blood glucose reading and then administered my radioactive glucose. Then I got to wait for an hour. She said that she'd be back later on to give me the barium for the CT scan right after the PET scan. So I read a little more and then fell asleep. It was nice to rest. Then Amy came back in and gave me my wonderful barium drink I sipped it and read. Then finally I could sip no more. I was done otherwise I was going to puke. Then it was time to get my PET scan. It was so easy to just lie there. I was on the table for about 20 minutes. Then the CT scanner dude came in... I was so relaxed and when he talked to me he scared the living daylights out of me. It took a moment to compose myself. He apologized. After that, the scan was about one minute more. Then Amy came back in and she unhooked me... I had a wrap around my arms because I couldn't put my arms over my head. She said that she was in the room with the CT person and she heard me shriek when he came in. She said I was so relaxed. Amy also told me that I drank the right amount of the barium. She was worried that I didn't drink enough because I drank only half, but she said that my scan came out great and my body knew exactly how much it needed. Then it was time to go. I said bye and that I may see her again, as I have radiation scheduled in the upcoming month. She won't be taking care of me because she works in nuclear medicine.

After that it was a trip down the tram again. I was walking through CHH and I heard my name. It was Net, my first chemo nurse. She said that I was looking great and asked how I was doing. Nice to know all these people. It make going to these appointments like coming home in a strange strange way. Then I went and got in my car and spent more than an hour driving home in rush hour traffic.

Day 181 - More physical therapy. Today I had another PT appointment. This time it was with Shereh. She was sweet. I got there and warmed up. Shereh showed me another place to warm up my arm, the hand bike. Then it was time to get massaged and stretched. But before she did that, she measured me to see how far I could move my arm. The first measurement was lifting my arm straight up. At the beginning of the session, it was 120 degrees... an 40 degree increase from the first measurement at the beginning of the week. For the next measurement... lifting my arm up sideways, I measured 74 degrees, an increase from 60 degrees. By the end of the session, the first measurement moved to I believe 160 and the side one to 77 degrees. So the therapy is working.

Last night I couldn't sleep. My boobs were hurting. So around 1.30a I ended up downing three ibuprofen. It worked. My boobs feel great now. They aren't as sore now. Yee haw! I was thinking about it... for those women out there... here's what tissue expanders feel like... imagine yourself wearing a very uncomfortable bra with an underwire. Now imagine you never being able to take off that bra. That's what tissue expanders feel like - just an uncomfy bra.

On a different note, I sold over $100 at a garage sale! I am trying to get rid of all the baby stuff. So I am making some money to buy new toys! Hooray!

Day 178 - Axillary Web Syndrome or Cording

Had my first physical therapy treatment yesterday for my cording. It was a good appointment. I got there shortly before one and was with the PT by 1.10. She went over my paperwork, asked me a few questions about pain and when I recognized the cording. I told her it was about 5 days after surgery. I told her that the cording was getting worse as time went by. Following the question and answer session, the PT measured my range of motion. My right arm is 113 degrees if I lift straight up in front of me. My left arm is 80 degrees. I had to stop because of the cording. Putting my hand behind my back was not an issue. My ROM was great. Following that, it was time to get busy. I got on the table and the PT started massaging the cords. She felt two of them. I asked her what exactly she was doing. She says that the massage is basically stretching the cord in a "C" shape, "S" shape and other manipulations. She would hold the cord that way. It felt really good, like a good stretch. It didn't hurt at all. It felt really nice. I asked her if she knew what caused the cording. There really isn't anything definitive. However, they believe that the cording is an inflammatory response to the removal of lymph nodes. What I didn't understand before was that the cords are actually channels that were already there in place where the lymph fluid drains. I just didn't feel the cords. So now they're inflammed. You can see one of the cords right in the bend of my arm. The PT manipulated my cords for about 1/2 hour. She could feel some tight ones in the back of my arm, but she wasn't as concerned about them. I did tell the PT about the "popping" of the cord and if it hurts. She says, yes it does, but it is brief and doesn't happen very often. At the end of the appointment, she said the cording was responding well to the therapy. I did feel like I could move my arm better. And today, it's not as bad. I go to PT three times a week now. Fun times. I also get to do exercises at home! My PT sent me home with several for me to do. In addition, I have exercises to do to make sure my scar tissue doesn't get hard and remains supple. Perhaps I'll get my husband to do those exercises on me! Those exercises include rubbing in small circles above and below the scar line.

My therapist also discussed lymphedema. I didn't know that there were stages to the disease. Stage 1-3. The first stage is reversible. Basically you feel something different about your arm... such as it feeling heavy or achy. You may not notice that it's starting to swell. The next stage is where you notice swelling, but it's reversible with therapy and manual manipulation. The last stage is where you've let it go and it isn't going away. But treatment is still the same. According to the National Cancer Institute, breast cancer patients rarely see Stage 3 lymphedema. Phew!

I think it's time to get another fill! There's a spot near my sternum that hurts. So far that has been the indicator that it's time to get a fill. Once I get my tissue expanders "inflated" the pain goes away. I asked Jason and he seems to think that it's because of the double material near the port. Nevertheless, I get my next fill on Thursday at 12.30 - 100cc's. I'll tell you how that goes. I got a call from the reconstruction office this morning. Jason had some sort of foot surgery and they're trying to space out his appointments. Fine with me. I don't have to leave work so early now and it's closer to my PET scan. Did everyone take notice of my ticker to the right?? My goal of 420cc's. You can track my progress! Hahaha! Looking at my boobies, I would guess that my size is about a B cup. I am right about where I was before I had kids. So about a 34B. Just so you know what the tissue expanders feel like, they're not very comfortable. There's that double material near the port that gets annoying. (see post Day 166) The expanders also "bleed" over on the sides by your arms, so sometimes my arms are rubbing against them. In addition, when I sleep on my side, I can sort of feel them shift... it's more of the liquid inside shifting. The tissue expanders are definitely heavier than the saline and silicone implants. The expanders are made with heavier material. Looking at my boobs is really interesting. They look a little flat in the front, rather than round. But when you put a shirt on, it looks fine. It's just nice to have boobs again! I'm wearing tighter shirts now.
Until next time...

How to Prepare for a Mastectomy

It's been a few weeks since my mastectomy. I am still healing. I am not 100%, but each day I am slowly getting better. While I sit here and heal, I have thought about putting a post together to try and help other ladies who may be facing a mastectomy and answer any sort of questions that they may have. One thing one has to remember is that every one is different. Everyone heals a certain way. Everyone has a different pain tolerance. But here are a few things that I thought were very helpful and wish someone had told me... or they did tell me.

Pre-surgery
* It's okay to cry. Going into surgery is and can be a frightening experience. It's okay to shed your big girl panties (literally, you have to). There's lots of things that can go wrong while under anesthesia and it's okay to be a little or a lot freaked out.
* If you go to OHSU, be prepared to take a shower the night before and the morning of with this putrid smelling "soap." It's an anti-bacterial wash to get all the germs off of your body.
* Change the bedding the day before your surgery. When you get home, and you want to lie in bed, it's nicest to do it on fresh sheets.
* Packing - pack light. Pack a pair of pants that are easy on and off (think elastic, yoga pants). You don't want to be buttoning and zipping up a zipper. My sister-in-law got me a great shirt from Heal in Comfort. The shirt was nice and comfortable and I wore it for days. Pack some socks and a pair of underwear. Bring a book, iPod or something to do in your down time. Unless you like daytime TV, TV sucks. Pack a shirt that buttons up or zips. Wear easy on/off shoes to slip into while you're in the hospital. Toiletries too.
* Pack a few snacks, easy on the tummy. When you order room service, it usually takes 45 minutes to an hour.
* Pack one of those neck things that you bring on an airplane. You'll be sleeping sort of upright for a few days.
* Shop. Make sure you've got your fridge and pantry stocked up.
* Make plans to have help with you the first week.
* Leave that toe nail polish on! They didn't say anything about my red toe nails. I also had on clear polish on my fingers. No one said a word.
* Ask your surgeon if you will see any bandages on your chest following the surgery. My surgeon used dermabond which goes over the incision and makes it waterproof. In addition, my surgeon doesn't use any "bounding" or bandages. However, if I wanted to be put into a camisole or something, she would have done that.
* Make your post-surgery check up before surgery.

Surgery
* Yes, they will intubate you - put a tube down your throat to help you breathe.
* They will most likely before you wake up from surgery drain your bladder. That means a catheder.
* You'll meet your surgeon again, the anesthesist, nurse anesthesist, head nurse of the OR and more. It's a bit overwhelming.

Post-surgery
* If your at all modest, throw it out the window. They've seen it all!
* Have an advocate with you. When you get out of surgery you're weak. I could barely press the "Nurse" button on the bed and when I got one, they could barely hear me because I could barely talk because of the tube that was down my throat.
* If you have to use the bathroom, try your hardest to do it yourself by getting out of bed. But do it slowly. Get help from everyone you can. I went about 8 hours after surgery. It took about 10 minutes for me to get from the bed to the bathroom about 10 feet away. I first sat up, rest, swung my legs over the side of the bed, rest, stood up, rest, walked a bit, rest, walked more and got to the toilet. I did tell everyone to give me privacy so I could pee. I don't pee well when everyone is watching me. And yes, they do measure the amount of urine output. (This is where having easy on/off shoes works great)
* Expect drains to be annoying. They are stitched in place. Pin them to your hospital gown.
* Expect to be sore - as in you just bench pressed your max about 100 times.
* Expect not to be able to take a deep breath in. Shallow breaths are all you can do until the swelling goes down, and if you had immediate reconstruction the pectoral muscles will be sore.
* Don't worry about wearing underwear. It's over rated after surgery in a hospital.
* Get up and walk as much as possible.
* Don't expect to get lots of sleep. Nursing shift change and vitals to be taken every 4 hours makes sleeping a pain.
* Keep a barf bucket nearby.
* Make sure you have water handy at all times.
* You may get a cough. This is a result of the intubation. I coughed a lot and got a lot of phlegmy stuff up.
* Fill your prescriptions at the hospital pharmacy.
* Expect the male CNAs to ask if you need any help with hygeine. I had to laugh because all the male CNAs asked if I need help. None of the women did.

Going home, I wore the same elastic pants I came to the hospital in. I also wore a mastectomy camisole home with the drains attached to it. The cami zips in the front. I didn't velcro the drains to it, but rather pinned them to the camisole itself. I tried, but it was too uncomfortable. If you get a bra or cami specifically for the drains, make sure your cami is roomy around the chest because it will be swollen. Also in the car, I made sure the seatbelt didn't touch my chest. You can put a pillow or something where the belt goes across the chest to pad it.

At Home
* If you had a double mastectomy, you won't be able to lean on anything in any direction because of the drains.
* Use lots of pillows.
* Don't forget to move around. You are at a higher risk for blood clots following surgery.
* Rest
* Do your exercises to get your shoulders working again.
* If you had axillary dissection, watch for cording or axillary web syndrome. If you suspect you have it, then tell your surgeon and have them refer you to a physical therapist who is certified in lymphedema.
* Get a lanyard to hook your drains on when taking a shower. Your first shower will feel great but take it very slow.
* Driving - my doctor said I could resume driving after I stopped taking narcotics and could turn my head left and right without pain.
* Drains - My surgeon said that the drains can come out when it stopped draining over 30mL in a 24 hour period for 48 hours. Again, the magic number is less than 30. For example: Day 5, in a 24 hour period, my drain collected 29mL cummulative. On Day 6, I measured 25mL of fluid in a 24 hour period. That means I can get the drain out. Now if on Day 6, I measured 33mL of fluid in a 24 hour period, I would not get the drain out. It has to be 30mL or less in a 24 hour period for two days straight. Mine came out one drain at a time.
* Stay on top of your pain medication.

Day 174 - Fill 'er up & Radiation Therapy

Another week has come and gone. I've completed my first full week at work. I'm glad that's over because I was soooo busy it was insane. But now the weekend is here.

So what happened? Worked Tuesday. Off Wednesday for 4th of July. We went to our neighbor's house, Jennifer and Dave. The girls had a great time playing in the pool (kiddie) and going down the slip and slide. We couldn't get them out of the water. Then that evening we set off smoke bombs and popped those snap things on the sidewalk. I was out by 9pm or so because I had to work the next morning at 4a! Thursday it was work until 12.15p and then it was to OHSU for two doctor appointments.

I got to the Center for Health and Healing around 1.35p. As I was turning the corner to go down the street to get to the parking garage, I "nearly" ran into Tracey and former co-worker Mark. Apparently they were on their way to meet up with a few doctors to do a piece on Dr. Oz coming to OHSU for heallh screenings. Then it was up to the seventh floor to wait for my appointment with Dr. Marquez, the radiation oncologist. That was a fiasco. Dr. M was running late and at 1.10, she called and said that she'd be 15 minutes late. I had an appointment with Jason from Dr. Thaker's office (reconstructio) at 1.40 for a fill. So both Brad and I sat around until about 1.30 until Christine the nurse navigator called down to Dr. Thaker's office and said that she was sending me down. She decided to pull the trump card and say it was fine for me to go to my other appointment because Dr. Marquez was running late. So I left to go see Jason. He said that everything is healing just fine and we could do a fill. We ended up doing a 50cc fill. I could have gone and done 100cc's. But 50 was just fine for this visit. I have three more fills... next week I will get 100cc's and then the following two I will get 75cc's. As the saline was pushed in, I could see my boobies grow bigger. They are now about the size of pre-babies!

Then we raced back to the original appointment with Dr. M. She didn't end up coming into my room until sometime after 3p! But she was worth the wait. I like her a lot. We discussed the course of treatment. She is planning on radiating the left chest, under the arm and also the supraclavicular lymph node. She talked about doing radiation closer to the sternum because the tumor was a little bit on the right side of the breast. That was something I had not anticipated. But it's more for preventative measures. I did find out that for radiation, she suggests women have the supraclavicular area radiated because she sees the regeneration of cancer there most often. I say radiate what you need to. I don't want to do this all over again. The downside to the radiation of nearly the whole left side of the chest is that I will have a lung decrease capacity of about 20-30%. The reason being is that they are moving the radiation field over the lung and the nodes they have to reach are deeper. So that means that the lung will undergo more scarring and damage. She says that it will be most noticible if I am an athlete. So I guess no more marathons for me! I also am at an increased risk of lymphedema. It goes from about 5% to 15% after radiation. She said that I will have to watch for the onset of it and when I notice swelling, to go in and see a physical therapist. The radiation will last for 28 sessions, or 5 1/2 weeks. It will last about 30 minutes and it will be five days a week. I said, "Hooray!" I thought I would be going 6 1/2 to 7 weeks of radiation. She wants to start after I get done with my fills. That will be in three more weeks. And it will be perfect timing because it will be 6 weeks post-mastectomy. Perfect timing. Dr. M says that I'll have reconstruction about 6 months after treatment. I beg to differ.... we'll see what Dr. Thaker says. The side effects of radiation: burns (redness, turning into a tan) and fatigue. That's okay. I did mention that I have a wedding to go to... and she said that I will be red from where they radiate the breast. I said that's fine. I just want my hair. :) She laughed as well as her fellow and a medical student who was shadowing her. I like her. I like that she gives the upside of things and the concerns. She was very comprehensive and I knew that she looked at my file because she was talking a lot about it.

Next week's agenda: Monday I have a physical therapy appointment for my cording. Thursday I have my next boobie fill. And then I have a follow up PET and CT scan. I asked for a follow up because I wanted to know if the cancer was gone from the node in my neck. Dr. M said that she will look at that scan to see if there's any cancer left in that node. She said if there is, then she'll blast that area with more radiation. She will also see if it truly is necessary to do the radiation towards the sternum. My inclination is to do it regardless because I don't want this awful disease to come back. Oh yes, she also said that in the pathology, they found that there was cancer in the lymph ducts in the breast?? I think she was referring to the DCIS that they found in the milk ducts. I did ask about the right breast. She said that there was absolutely no cancer on that side and there is no need to radiate that side. Ah and after radiation, she said that the left breast will always look a little odd and won't hang as nicely as the right side. I said, not a problem, as my left boob always looked odd anyway. :)

I think that's about it. Oh, Wednesday morning I woke up with "bed head." It was nice to see bed head again.

Day 167 - Breast Cancer Survivor?

Today has been a decent day so far. I woke up to two kids coming into my bedroom to say good bye to me as they were being herded off to daycare. I wanted to sleep some more. But that's all good. I like that my kids are excited to see me and want to give me kisses and hugs. However, I am sore. It's amazing that 25 cc's of saline in the tissue expanders has made my chest miserable. It's the skin that hurts the most. it's not necessarily the pectoral muscle that hurts. It almost feels like a burning sensation on my chest. But it's doable. I swallowed a few ibuprofen to help with the pain and it's doing good. I found that if I lay on my side, it doesn't hurt as much. But if I lay on my back, then it does hurt. And if I sit up or stand it barely hurts at all. It's like a dull ache. Looking in the mirror, I can tell that I am bigger. I make a much bigger curve in my shirts! :)
This morning as I was standing around the kitchen waiting for my coffee to be done percolating, I was wondering about survivorship. When does one call themselves a breast cancer survivor? I ask this because I received a wonderful, wonderful, wonderful and thoughtful gift in the mail from three of my real good friends. It's a handmade necklace with the word "survivor" handstamped in metal. Along with it a metal ribbon and a pink jewel. Made me cry. It was a wonderful tribute to me beating this awful disease. Now that all the cancer is out, I can celebrate... But am I truly a survivor? I still have radiation to go through, an oophorectomy and reconstruction. Is there a criteria where you can "stamp" yourself as a survivor? I did a google search (yes, it all comes down to google). I searched the phrase "When do you call yourself a breast cancer survivor?" There were a myriad of answers. Each is personal. Some say the moment you are diagnosed and you plan your course of action, to when the cancer is all out of your body, to after all the treatment is done, to never because there is no steadfast cure. Personally, I am not sure. In my humble opinion, I would not call myself a survivor the moment I figure out what treatment plan I am going to take and I know that I would never not call myself a survivor since there is still no permanent cure. That leaves me to calling myself a survivor somewhere in between. Yes, I am cancer free now. I could call myself a survivor. However, it doesn't quite feel right. I could call myself a survivor at the five year mark, but that doesn't feel right either. One person wrote on her blog that she just knew when she could call herself a survivor. There wasn't a characteristic that marked it. She just "knew." As of right now, that marker still hasn't come. Perhaps it will be when radiation is complete. Perhaps it will be once reconstruction is done. I know that radiation and the oophorectomy is a preventative treatment plan, but I still don't feel like a true survivor. Maybe that "light" will click on when I'm going through radiation. We shall see. As of right now, I feel like I am on my way to "survivorship" status. I'm not quite there. But I will let you know when I feel as if I am truly a breast cancer survivor. I'd love it if you would respond and tell me what your idea of "survivor" means. If you were in my shoes, when would you declare yourself as a survivor?
As for my AWS or cording. I have a physical therapy appointment on July 9. I have one on July 5th too with the therapist Dr. Naik recommended. However, they are out of network and my insurance will cover only 60% once I reach the out of pocket deductible of $1200! Ouch. So then I called my physical therapist I had been working with in January when the doctor thought it was a blocked milk duct. She had called me and told me that there are many therapists she works with that deal with lymphedema and such. Plus, her group is "in network" so everything will be paid for. :) So Tasha got me an appointment with a PT named Jess. So I will go in and work with her to get this cording issue dealt with. I need my arm to be flexible for radiation. They will need my arm to be up. So I need this taken care of asap. I am also continuing with my arm stretches. I am trying to get more flexibility in my shoulder as well as the arm... up to a certain point.

Boo hoo, this is my last day of my vacation. I am going back to work next week. Monday. But I work 2 days, have a day off and then work 2 more days before having 2 days off again. So it will be nice to ease into work. Fantastic.

Day 166 - Tissue Expanders (and pictures)

Today I had a follow up appointment with the reconstructive team. The appointment was for the removal of the last drain, but since I had that taken out on Monday, it became my first Fill appointment! I decided to keep the appointment just in case and to have the doctor or whoever it was look at my incisions and stuff. Lucky me, I got Jason again. Jason said that my wounds look good and everything is healing nicely. I did have some questions for him.

1. There's a place on my chest wall (near the cleavage area) where on the right side it feels awful, dull ache or pain... is it normal? He says that it's normal. It can be from the tissue expander and that with a fill, it can get better or it can get worse. However, there is a drug that can help with that soreness. It's called, Gabapentin, and what it does is blocks the nerve receptors by blocking the sodium. This drug is something that I would take on a regular basis three times a day for several weeks.
2. Are there any specific excercises I should be doing with the shoulder and arm because I am dealing with cording or Axillary Web Syndrome (AWS)? He says that I should be walking my fingers up the wall. When it starts to hurt, I need to back down and then stretch the arm/shoulder that way. Then the next time, I can go a little further. It should not hurt when stretching.
3. Chest wall tightness, how long will it be that way? He says it is normal for the chest wall to be tight for several months. He says that the swollen chest area can last for several weeks and it will take time to heal. For the next 6 weeks I shouldn't be doing any heavy lifting. He says that after 6 weeks, my incisions are only 70% healed and strong enough. That's amazing!
4. Shower facing front? He says that now that I am two weeks past surgery, I can face front and let the water hit my chest. Before, I showered with the nozzle pointed at my back. It's a little hard to wash off the soap that way. :-)
5. Muscle spasms - He says that I could have muscle spasms. They can bet treated with valium or ativan. Interesting... ativan. I had a big one last night as I was walking into a store. I thought there was a bug crawling on me or in me. It freaked the heck out of me!

Then it was time to get my first of several fills. So my tissue expanders are 350cc's. They expand them even bigger than that... about 20% bigger after I say "Done." When I was reading my pathology report, I did see that the weight of my breast tissue they took out was about 220g or so. But breast tissue goes under the arm and up the chest. So who knows how much breast tissue would have made the "cup" size. Basically, it looks like my tissue expanders will be going to about 420cc's when all is said and done. I am just going for a full C cup. That's all I really want. I liked my B, but it didn't fit some of the clothes I had. So my first fill was 25cc's. Jason used the medical "stud finder" which has a strong magnet on it to find the port. He searched for it on the vertical and horizontal access. I told him where it will most likely be because I can feel the port area through my skin. I was right on the mark too! Then when he found it, he was going to disinfect the area with betadine... um, no! That's a derivative of iodine. He laughed and said, "That's right. I saw you were allergic to it." Then he used alcohol. Next he took a long needle (like the needle for an epidural) and poked me. I didn't feel the poke, but the poke was uncomfortable because it was going right into the tissue expander (TE). Then he retracted some fluid - it came out blue. Dr. Thaker likes to put a dye in the expander so when they expand, they know they've hit their mark. Then he started the fill very slowly... one cc at a time. Finally he was done. I could feel the TE getting ever so much bigger. My breast does feel a bit heavier. Then it was time for the left side. Again, I hit my mark with where the port was. He also looked at my little blister on my chest. He said it's healing nicely, but wants it to be a little more healed before they start injecting 100cc's into the TE. That's fine by me! So while he was injecting the saline in the left breast, I could feel my skin expanding a bit. So far, my boobies feel good. But we'll see what tomorrow brings. Jason says that tomorrow I could be feeling sore. But today I feel great. No pain, no gain right?

And as I promised, here are a few pictures:

Getting ready for surgery (I had my boobies!)

Post mastectomy (the very next day).
You can see the drains attached to the side of my gown.

Here's my pain ball, which became a pain in the neck.

These are the little "soaker hose" tubes that were wrapped in my breast cavity.
About 12" was inside of me and if you looked closely, you could see the little holes!

This is what the tissue expander looks like. The round port is metal.
That's where the saline is injected. This demo one is 750cc's.

Here's a silicone implant.
They now have "gummi" implants which are now being used in Europe.

Here's the medical "Stud Finder".
Magnet is on the right.

Here's how much hair I have... I actually have more.
This picture was taken just a few days ago, if you can believe it.

So, there you have it. My mom left on her flight today back to Arizona, so it's nice to have a quiet house. I can relax and take a nap! :)

Until next time... oh yes, my next appointment for an expand is next Thursday!

Day 127 - Oophorectomy Surgery, Breast Surgery & Breast Reconstruction Surgery

Sorry that I haven't been posting as frequently. I have been busy at work, getting over a cold and just busy when I get home to get to the computer to really post. Most of you may be wondering what happened at my three appointments on Thursday. Well, two out of three of them went well...

First appointment was with the Gynecologist Oncologist or gynoc. The appointment started off well enough. I went in and we started discussing the oophorectomy. Somewhere during our discussion the appointment went from a consultation to a pre-op appointment. The doctor left and told me she wanted to examine me and to get undressed. Then she came back in and looked at me and did a pap test and more. Then she left and said we'll discuss more of the surgery when she returned. But before she returned, her nurse came in with a tray full of blood. I said what are those tests for? She said she didn't know and said she could go and ask. I said yes because I didn't want to give blood without knowing. She left and then came back in. Turns out she was getting blood for pre-op stuff. I said, no. I didn't want to give any blood through my port because I was going to be talking to my other surgeons and they might want some other tests done and I didn't want my port accessed twice in one day. Hell no. Then I just broke down in tears because it was happening all so fast and the doctor didn't even tell me what the hell was going on. She had disappeared and said she'd be back to talk about the surgery. I figured we'd talk more about what went on and ask more questions. At that time the doctor came back in and I asked her what was going on. I said I came in for a consultation and where did this turn into something else? She replied that "You seemed certain that you wanted the surgery so I went ahead and made this into a pre-op appointment." I said, "Where did that change?" I told her I was a planner and I don't like surprises and I feel like I am being surprised right now and it doesn't feel good. It was at that time that she actually took time to discuss with me the procedure and what sort of other tests are she's going to need... blood, ultrasound and something else. I refused to give blood, so they set it up that after I meet with the other surgeons, I can get my blood drawn. We also talked about if I should get my mastectomy with immediate reconstruction and the oophorectomy done at the same time. I hadn't decided because I hadn't talked to the other surgeons yet. So after that discussion, we went through the pre-op stuff, like the risks and what not. She does laproscopic surgery. She'll make up to 6 incisions in my abdomen to snip and drag out the fallopian tubes and the ovaries. Once they are taken out, they are sent to the lab to be "staged" - to see if there were any microscopic cancer cells/tumors. In about two weeks the results come back. Now normally if I wasn't BRCA positive, they would stage in the operating room. But they want to be certain that everything is okay. The surgery takes about 2 hours and if I was doing this as a stand alone surgery, I would go home the same day. I asked Brad if I was overreacting about the whole appointment. He said no, because he thought that this was going to be a consulation appointment and not a preoperative appointment. He noticed that it changed its course with no warning. I am not sure if I want to go with her. I may talk with Brooke or Christine about her because I am not sure if I want to go with her because of her bedside manner.

Following that disasterous appointment, Brad and I walked to the Old Spaghetti Factory for lunch. That was a nice walk... it's about a mile away if that. We had a nice lunch and then walked back to OHSU's Center for Health and Healing for our next two appointments. We meandered our way back because we had about an hour to kill.

We got to our appointment about 20 minutes early and then were led back into a room about 2.30p. On our way there, I saw Maureen one of the CNA who works with Dr. Luoh. Then I passed the nurses station with the schedulers and Brooke was there. She ran out to give me a big hug. We talked for just a moment before we went to the our room. To make a really long wait short... I wandered out of the room and up to the nurse's desk to talk to Brooke. I told her about the disasterous Gynoc appointment. She and the scheduler, Sierra, were happy that I stood up for myself and said No and stopped all procedures from happening. They said that many patients don't advocate for themselves and just go with it. I always try to be in the know and so that way I am prepared. In any case, I saw Dr. Pommier, the surgeon who put in my port while I was chatting with the ladies. He called me out and asked, "How's it going Mrs. Rake?" I laughed. Finally after 3p, I finally got in to see Dr. Naik. She was finishing up with a patient. She looked at my boobs and was impressed that I responded so well to treatment. We talked about surgery and the whole appointment was driven by me and Brad asking questions. My first question after she examined me was "Would you suggest that I be a candidate for a lumpectomy now - IF I wasn't BRCA positive?" She said yes. That's all I wanted to know. I don't want a lumpectomy, I just wanted to know if I responded well enough to the treatment where a lumpectomy was a possibility. I'm still getting a double mastectomy. I asked how long the surgery takes... normally 4-5 hours. We discussed whether we should do an oophorectomy at the same time. She said that some patients do, but recovery time is longer. She suggested that I not do it at the same time. The oophorectomy will have to be done after her surgery, so that would mean I would be under anesthesia for 6 hours at the minimum and that's too long. Good to know. We talked about drains (a question she deferred to Dr. Thaker), good clothes to wear afterwards, pain protocol (narcotics, she uses IV pain, then changes to pill form as soon as the patient can handle pills), port removal (she's going to take out the port during the surgery - hooray!), is surgery scheduled for morning or afternoon (morning). I also asked what kind of lymph node dissection she will do. She said she would do an axillary dissection. She will take out 10-20 nodes depending on how many are there. Each person has different amounts of nodes in their body. She said that she will take out the cluster that was affected under my arm... and that may be anywhere between 10-20. I asked about the different levels of node dissection. She said that they normally do Level 1 and 2. Level 3 is where it's deep in the body and she normally doesn't do those unless she has to. Brad asked if the incision would be bigger or smaller now that the tumor has shrunk. She said that it would be a bit smaller. I asked how many nights I can expect to be in the hospital. Dr. Naik said anywhere from 1-2. I will have the drains in my body 10-14 days. I will be sore for a couple of weeks. My next course is another pre-op meeting where we go over the nitty gritty information and get waivers of consent. I will need an EKG and blood work. We asked her about blood work... which she wants about a week before the surgery. She said that since my last treatment was a week ago, my blood counts will be out of whack. It won't be a true representation. (Um, then why did the gynoc want my blood today? She should know that right after chemo, my blood counts won't be a true representaton) We said cool. I can't wait for the next step. Dr. Naik said that I look good and she can't believe that time has passed so quickly. I so believe it!

Next we waited for the last surgeon... Dr. Thaker. She came in and was so upbeat, energetic and I really like her. She said that I look great! She remembered the first meeting and she said that I look so much better than that meeting. Um, yea. :) Her first question was if I wanted to stay the same size or if I wanted to go bigger. I said, after all this, I want to be bigger. She laughed. She said that we will go with our original plan to do the tissue expanders and then after radiation, we'll switch out the expanders with the implants. Hooray! This appointmet was again driven by Brad and I. We had questions... the surgery will last about 1-3 hours. If all goes according to plan, as soon as Dr. Naik is done with the first breast, she will be called in and she will place the tissue expander under the pectoral muscle. She says usually when she's done with that, Dr. Naik is done with the second breast... so it's sort of a tag team. Wonderful. Less time under. She also uses a product called AlloDerm. AlloDerm is used because the pectoral muscle will not cover the whole expander and it creates sort of a sling. It's made of collogen, so blood flow and cells will begin to take over it. She calls AlloDerm as an empty apartment, and my body just needs to move in! I like her - did I mention that? After the expanders are in place, she will put in some saline so at least I will have little boobs after surgery. She doesn't want to fill them too big because she doesn't want to stretch out the skin and cause bad healing. Apparently when Dr. Naik goes in to do the mastectomy, she takes away a lot of the blood flow, so my skin needs to find new ways to deliver blood to other areas of the skin. I didn't know that. That's interesting. After about two weeks, I will see Dr. Thaker and the injecting the saline in the expanders. She'll start off small and then increase (100mL max). She said that it usually takes about 3 appointments until the desired size or about 4 weeks. Hooray! It's going to be cool because she said that I will be taking my new boobs out for a test drive. I don't have to guess. All I have to do is say "stop" and that will be it! So when I reach my desired size she'll put a little more in to for some "padding" and that will be it. Then I go to radiation and do that. Following that, she waits 3 months to make sure the skin has healed. If my skin does well, then it's on to the implant switch. That surgery will take about 2-3 hours. It is at that time that I think I will do the oophorectomy. Dr. Thaker said that would be fine. I asked about nipple reconstruction. That can be an office procedure at a later date... and tattooing would be done in office as well. I told her that I will be flying in September and since the expanders have metal in them, what happens. She said that she can write a letter stating I have expanders. She said that if I go to some remote area, then they may not take the letter... but she does write letters and says that normally security doesn't ask, nor does it cause problems. She said that when she was going through security at LAX, the security person asked if she had implants. She said, "No, but I have a lot of patients who do. Thanks for asking." I laughed. She said that I will have several drains... the breast and I may have one in the lymph nodes. They will be taken out in the office and held in by a stitch. As for pain management she puts in a pain pump which is a tube that that goes into the breast and numbs it, similar to novicain at the dentists office. It usually lasts about 3-5 days depending on how much I use it. When it's done, I can pull it out at home! Oh yes, she said that Brad can administer the saline into the tissue expander... um, no. She also said that when I am expanding, she will give me some pain medication to take before going to bed. She said that it's more uncomfortable and most people have the pain when they're going to bed and trying to relax. Our next appointment will be a week or so before surgery for the consent form and to go over the actual surgery. Fantastic. She'll also show me what the expanders look like. Oh yes, at a later date, she may take some fat from another part of my body and insert it onto my chest to make the breast look more natural - rather than two cantalopes. Ha. She then showed me pictures of breasts before, tissue expanders and then implants. Looks good! I can't wait.

Day 109 - No Steroids!

Today was a great day. No pains to speak of... well, maybe two... and they're called children! haha!

I forgot to post last week that I don't have to take the steroid dexamethasone. Dr. Luoh said if I didn't have any reaction to the taxol on treatment day, then I wouldn't have to take the dex the night before my next treatment. This is great news because the dex can make me retain water and make me more hungry. I feel like a friggin michelin man. I hope to loose the water retention weight which of course is right around my belly. I don't want the reconstructive surgeon to have any reason to do a skin graft from my stomach. I want the tissue expanders.

So, in lieu of my upcoming double mastectomy and immediate reconstruction (with tissue expanders), I've created a poll. Please participate in my non-scientific poll to the right. Would you increase, decrease or keep the same size of your breasts?