Monthly Archives: September 2011
As we approach the much dreaded Breast Cancer Awareness Month there are cloyingly sweet pink billboards and product promotions popping up everywhere. I headed to the outlet mall recently with the very specific purpose of finding a small handheld bag because my typical large bags feel too heavy on my shoulders after surgery and my crossbody bags are out now too. So, I go into Coach because I know they have small pouch type bags. I’m greeted at the entrance by a lady in a white button-down shirt and Coach scarf and she has on brown lip liner and pink lip gloss. I don’t know if I’m more offended by her make-up choice or what happened next. She hands me a coupon for 20% off anything in the store. She then tells me about a further promotion they are having for “breast cancer awareness”. If you donate $1 you get to have 25% off anything in the store or if you donate $5 you get 30% off anything in the store. I asked,
“What organization is the money being donated to?”
Coach Lady: “Breast cancer”
Me: “I know the money is for breast cancer but who is the money being raised for?”
Coach Lady: “It’s not for a person, it’s for breast cancer.”
Me: “I understand that but what is the organization?”
Coach Lady: “You know, the whole breast cancer thing.”
At this point I realize she’s a dumbass. I know, I’m slow and give people the benefit of the doubt. She’s not trying to be rude, she just doesn’t get it. I’m ready to give it up and just look around but she leaves her front entrance post to go behind the counter and get a pretty pink flyer for me. I flip it over and on the back it specifically says The Breast Cancer Research Foundation. I point this out to her and she says, “yeah, that’s what I said, breast cancer”.
So, I’m thinking, look lady, breast cancer does not have a bank account. Breast cancer cannot accept donations and doesn’t care if anyone is aware of it. Breast cancer lives only in the hidden darkness of a woman’s unsuspecting body only to be discovered by accident or routine screening and all too often way too late to be cured. No, I do not want to support breast cancer. I hate breast cancer.
I wander around the store but didn’t see anything and was feeling too bothered by the situation to look. On the way out of the store I hand to flyer and coupon back to the lady and tell her that I’ve already donated my breasts to breast cancer and I think it’s very important to be specific about what you are collecting money for. Because otherwise it’s just marketing and trying to sell product and that’s just insulting. She stood there nodding and looking dumbfounded and I left.
Now, I realize that I can’t take on every company who uses a pink ribbon to make money but this was my first confrontation and I felt a need to speak up. I think that’s my biggest problem with the pink thing. Aside from my general angst and non-conformist attitude and need to reject enlistment into any group to whom I do not identify I do not like using sympathy and guilt as a way for a company to make more money. And in this case it was just the bottom line of a small donation gets you a bigger discount which may get you to spend more money at the store and probably does profit some money for breast cancer research. It was just the fact that the employee had no idea for what she was soliciting donations. If you are going to have this big of a promotion and if you really cared about the donations for breast cancer research then you would educate the staff about the goal of the money.
Just remember this next month during breast cancer awareness month. I think we are all quite aware of breast cancer. Let’s do more to fund research to beat it.
I went to the plastic surgeon on Thursday for the first post surgery tissue expander fill. It really wasn’t that bad. It was amusing actually. I feared the worst but in actuality my chest has no feeling or sensation left. I didn’t see the surgeon this appointment other than in the hallway. I guess it takes more expertise to administer facial injections rather than jam a needle into an invisible hole in a chest. The nurse took care of me at this appointment. She has been very helpful from the beginning. She even answers questions over email which saves me from having to make a phone call. Huge win!
I took off my zipper front shirt and front closure sports bra and put on the teeny cropped paper gown that the plastic surgeon stocks. He’s no Dr. Lilly, that’s for sure. I waited on the table wondering how exactly they were going to find the port to inject the saline. I was visualizing her feeling around the skin and then sticking a needle in and poking around until she found the port opening but it was much more sophisticated than that. She used a scanning device with a magnet that wiggled when it got close to the port and then pointed directly at the port opening. She then used the device to mark the spot with an X before bringing out the big needle. She used two huge syringes for each side with 50 cc of saline in each one. She warned that I would feel the needle prick and then feel the needle go through the muscle but I didn’t feel anything. I could see the skin rising with the fluid. She told me that the PS put
150 cc of saline into each tissue expander at the first surgery. With this injection I am up to 250 cc each side. It looks like I have two hamburger buns sewn into my chest with one being about a half and inch higher than the other. And they both are too high. The top of the expanders are about a inch and a half (right) and 2 inches (left) below my collarbone.
Here is a picture of the fill process:
Immediately after the fill I could feel pressure on my chest and I had to exert effort to take a deep breath. About a few hours after the fill I started feeling achy. It kinda feels like having your braces tightened and it’s likely
The nurse said she expects I’ll end up with about 450 or 500 cc silicone implants. I’m going to go in for fills and let them know when I like the size. I’m not sure how I can judge size with these because the shape is so funny. I think I still have a lot of swelling because everything looks wonky. Maybe it will make more sense soon. If I get 100 cc each appointment I’ll need two more appointments to hit 450. And then they do one extra fill to make sure there is enough skin to cover. By then, I’m sure the tissue expanders will be up to my chin. I’ve been stocking up on ruffly tops and cardigans.temporary. However, the nurse said that the expanders will be uncomfortable the entire time they are in. Most people are relieved after the exchange surgery because the silicone is much more comfortable and also looks better.
You know how you don’t really realize how bad you were feeling until you start to feel better? That’s where I am right now. Better for sure but still not back. I can tolerate some amount of activity every day but then I’m exhausted. I am entered into the OSU yoga study now. I passed the screening appointment. The study is to examine the effect of yoga on fatigue and stress post breast cancer. I don’t know if I got in the control group or yoga group yet. The appointment today was at OSU Medical Center. I took the kids to daycare and headed straight up even though I was going to be early. Of course, even though Amira has been doing great at daycare she screamed and cried when I dropped her off. It has been daddy or grandpa dropping her off so far and I guess she couldn’t handle saying goodbye to mommy. I figured I’d stop at a cafe and get a coffee with the extra time but then I was stuck in traffic for 40 minutes. And then there was construction on campus that got me turned around. Once I got there they asked me about my stress level. I said, “not so good lately”. I met with a researcher, a nurse and a yoga instructor. The researcher took medical and demographic information, the nurse took vitals, weight and body measurements and the yoga instructor had me try 4 moves to gauge flexibility. They were very easy even for me in this state. They told me that most of the patients are older but they do have a few young people.
I can’t believe I originally thought I could start work this week. If it was an already established job and if I could start back slowly without taking on a full caseload then I think I could have but I’m glad I decided to take the full 6 weeks. I’m not only starting a new job but it’s a new career. And even though I’ve been going to school to do this job for 4.5 years I have a confession.
I have no idea what I’m doing.
I’m anticipating a rough start to the job since I will be behind going in. Add to that the fact that this is the first full time job I’ve had in over 8 years. This family has some adjusting to do. It’s definitely been a big year for changes.
One of the things I’m nervous about is how I will adjust to being back in the real world. I’ve been a cancer caregiver and a cancer patient for months now. How do I go from this to just being normal? I guess it’s just like how I did the rest of this summer. Just keep moving forward. Once I get past the transition it will be nice not to talk or think about cancer all the time. But, it’s like it’s become a part of me and I fear that it will never go away.
I received good news from the gynecologist today. The cyst that was removed on Friday was benign. It was just a dermoid cyst. After viewing the ultrasound the doc had guessed this was a endometrioid cyst but upon examination it was not. A dermoid cyst is the really cool kind that has hair, teeth and skin cells in it. Either way, it’s out and it’s not cancer.
To celebrate I drove myself to buy a long awaited graduation present. I’m also calling it a cancer-free present. I got an iPad2. I was originally going to give this one to Jeffrey and I’d take his old one but since he’s eyeing a macbook pro he told me to keep the new one. I plugged it in but I’m too exhausted to play with it tonight. It was a lot of work going shopping!
I got an email from OSU today. I was invited to participate in a research study looking at stress and health following breast cancer treatment. This study will involve 4 clinic visits that will include a physical examination and mental health interview before, during and after the treatment. The treatment is just yoga classes for stress relief and relaxation. If I pass the physical exam and if the classes fit in my schedule I will get paid $250 to attend 24 free yoga classes. Not a bad deal! I’m hoping it works out because it will probably be good for me both physically and mentally.
I feel like I was somewhat productive today even though all I did was sweep the floor, feed the chickens and drive to pick-up Amira from daycare. But, I did all of those things by myself so I’m pretty proud. We also went out to dinner. I haven’t taken any pain pills in the last couple of days because just regular strength Advil doesn’t really seem to help and the pain doesn’t seem severe enough anymore for percocet. After my afternoon of activity I am definitely feeling it though. I’m achy and sore and feel the need to sit down. I mean, screw it, I guess I could just pop a pill. They’ve been generous with the prescriptions. Might as well take them! With all the research showing a link between alcohol and breast cancer I’m going to have to use something for my Friday night buzz. Maybe I’ll just take on an oxy addiction.
I haven’t heard from Dr. Bell’s office on the pathology report from the ovary. I called yesterday and the nurse seemed surprised that I was calling and said that because of the holiday it might take a few days. I’m so used to Dr. Lilly by now because he’s somehow able to get pathology back within 24-36 hours even over a weekend. And he always personally calls me with the results right away. I’m thinking with this surgery it is not considered “high risk” so they are taking their time with it. I guess that’s good news. I’d just really like to get the information so I can finally take a deep breath. I actually feel fine from the oophorectomy. I heard from friends that it takes a couple weeks to recover but my advise to anyone is to have a mastectomy 2 weeks before laparoscopic surgery and it won’t be a big deal at all.
So, these tissue expanders feel like bricks sewn into my chest. And they are barely filled. I’m imagining that the fill process will not be pleasant and that I will be uncomfortable until I get the silicone implants. Dr. Lilly confirmed that patients commonly feel that way about the tissue expanders but getting the silicone in is instant relief. Jeffrey has been jokingly saying “D’s by December!” but I told him there is no way I’m going that big. The plastic surgeon said that the people with small breasts always go bigger and the people with big breasts always go smaller.
My check-up went well and everything is healing as planned. I don’t have another appointment with Dr. Lilly until February and he said there is no need for me to see an oncologist again but he wouldn’t be opposed to it if I wanted to. He said the 1% risk of reoccurrence is there for protection but with this surgery he doesn’t expect to see anything show up. I’m still comfortable with this decision. I read a study yesterday from Stanford that gave a 8.5% reoccurrence rate for DCIS with lumpectomy and radiation and tamoxifen. That seems really high for me considering that I only had a .2% chance of getting breast cancer in the first place.
Tonight, little 4 year old Amira asked me if I was going to die. We were lying in bed in that moment after books have been read but before I tell her to “be quiet and go to sleep”. She’s a wiggly little girl who is either going 90 MPH or is asleep. There is no inbetween for her. She had her first big girl sleep over at her friend’s house a few days ago and she came home seemingly older and with extra attitude. I think she’s also heading into a growth spurt that both kids tend to have in the fall and adds to their grumpiness. She’s been having quite a few time outs in her room this weekend, as we have taken a zero tolerance policy on the whining and crying. And then she comes out with a question like this. We’ve given more time to making sure Xander understands and is not scared and I think we have not given enough credit to Amira. She is oblivious we thought. We’ve been honest with her that I had breast cancer and my boobies were bad so the doctor had to take them off and will give me new ones. She has seen me getting out of the shower and has been very brave but she definitely did notice. She told me she’s sorry that my breasts have surgery and just wants to know when will I get new ones. So, this question came when she was kicking around getting settled in bed. She inevitably kicked my chest which is of course still painful from the mastectomy. She also wants to snuggle in but I just can’t take that much pressure yet. I had to be firm and push her away. Then she asked if I was going to die because of my cancer. I told her no. My cancer was gone. I didn’t add the “for now” part because I’m not even letting myself entertain the idea of recurrence or metastasis because it’s not likely.
After experiencing cancer with my own mother last year the last thing I want is for my daughter to have to have the same fears and stress. How can I keep this from her while still telling the truth? I also think about when she is older and I have to tell her it’s time for her to begin her own cancer screenings. My cancer diagnosis came at 31 but it was relatively large in size and has likely been there for a couple years. So, how young of an age does she need to begin screenings? 25? 20? 18? I don’t know. I do know that I hope there are more genetic markers identified and that possibly we can have these worked into standard of care so that we are not paying out of pocket for each one of the monopolized and patented DNA tests.
For now, I just told her that mommy is going to be fine and I’m going to get my new breasts for Christmas. She asked me if they would be put in a Christmas bag with a bow. I think she’s picturing breasts under the Christmas tree. I might consider taking her to one of my plastic surgeon appointments so she can understand better. That they aren’t going to be the same breasts. That they will look and feel different than before. That’s probably a bad idea but I do think she will figure it out as the process happens. Both kids will. Sometimes I wish they weren’t quite so smart. The instinct to protect your children from any and all pain is so strong that the first reaction is to lie. We’ve settled with the give them enough information but not too much rule. I hope that is enough.
I seem to be doing okay with recovery this time. I didn’t puke once and I have a very attentive anesthesiologist to thank for that. I think he took it as his mission of the day to control my pain and keep my from puking. Considering my track record with surgeries that was not easy. Immediately after surgery I rated my nausea as a 3-4 and my pain as a 4-5. He hit me with some more stuff and when he came back to check 20 minutes later I rated pain as 0 and nausea as 0. I heard him say “mission accomplished” as he walked away. The nurse wrote down on an index card the drug cocktail I was given during surgery and after. I can give this to the next anesthesiologist for my next surgery. Although, I will be at the same surgery center so with any luck I’ll get the same guy.
I have been up walking around and doing small things. I walked laps in the gym at the community center yesterday and today I’ve already been up and showered and tended to chickens and the garden. We may try for a family outing later but I’m not sure. I don’t have my appetite back but I’m trying to eat extra protein to help with healing. This has a result of making me a bit queasy but I don’t think I’ll lose my lunch. I am drowsy and weak and I’ve also been having trouble sleeping. Also, interestingly, my hair is falling out at an alarming rate. I wondering if it’s all the anesthesia. It could be one of the meds I’ve been given but I don’t know which one. I’m making a list of things to talk to Dr. Lilly about on Tuesday.
For this surgery I have 3 small incisions. The one in my bellybutton is the largest with smaller one closer to my left hip and one on my pelvic bone. These sites are a little sore but it’s not bad. The hardest part is the gas pains that reach all the way to my neck. It’s from the CO2 they injected for surgery. I’m hoping exercise will help work that out. Of course, my chest is still sore from the mastectomy. I think these tissue expanders are just going to feel like bricks sewn into my chest until I am able to get them out in December.
I have made progress with my arm and shoulder exercises. I can lift my arms much higher than before. I just have to keep up with the movements. It’s hard for me to think that just a couple months ago I was running 3 miles and doing push-ups and pull-ups for exercise. Hopefully I’ll get back to that before winter takes over and I lose all motivation.
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3 out of 5 surgeries are now DONE! I feel pretty good. I stayed longer in recovery today. Jeffrey was starting to get restless in the waiting room because there was a woman trying have conversations with him about random things. He’s not a talker and especially not with strangers so he’s been cracking me up with his evasion tactics. Waiting room strategies include not sitting by the TV. All the friendly social people sit by the TV. Also, iPad instead of books or magazines. Sit in a corner preferably facing away from the door.
They gave me every possible medication to prevent nausea and so far it has worked. Although, immediately after surgery they had to give me more nausea meds and even pulled out some aroma therapy. The anesthesiologist did not give me any narcotics to prevent nausea (and I assume possible aspiration). I love the Ohio Health system because they can look up exactly what meds I had last time and change it up if needed. All the meds I was given made me very very sleepy and yet more aware of what was going on around me. I remember more this time which is good and bad. There was a heated ceiling lamp at the surgical center an they also brought warm blankets. I tend to shiver coming off anesthesia. The nurses were all super nice and let me keep my bra on for compression and protection of incision sites during surgery.
Dr Bell ( the gyno) took out the ovarian cyst without any problems and looked around for anything possibly suspicious but it was all eye clean. I will hear the pathology report from this on Tuesday. Stupid long weekend. I know that rationally this is just a cyst but until I get that path report I will not be able to completely relax. After a cancer diagnosis that is just where your head goes even if it is not logical. We both love Dr Bell and now I know why Dr Lilly recommended him. My original gyno is a cocky asshole and talked about this surgery like he could do it blind folded and standing on one foot. Really dude? Get over yourself. I want my surgeons to be confident but a little tact would be nice.
One of the side effects during recovery for laparoscopic surgery is chest and shoulder pain. Come on, really? Haven’t I had enough of that? I’m feeling it a little bit already. It’s from the CO2 they inject to do the surgery. They suck most of it out but can’t get it all and it rises to shoulders and chest. It’s all good though. I got another 40 pack of Oxy even though I didn’t finish the first one yet. Doctors are very generous with drugs when ( as said by my friend B) “UR the only person I know who gets this many incisions in such a short time who wasn’t actually bitten by a great white shark”