May 29

I decided to take some time off from being a cancer patient. In the past 2 weeks I've had countless calls from doctors and labs to schedule the numerous tests I'll need to prove I'm strong enough to survive chemotherapy. I've put off every one until after my next appointment with my oncologist on Tuesday. I think I've frustrated the entire oncology department at UCSD because they have resorted to calling my mom to see if she'll bring me in. Thanks for having my back mom! I anticipate a bit of lecturing at my next appointment, but it has been worth it. I feel that I have to go into chemotherapy not only physically strong, but mentally prepared as well. I can't carry all my stress into my treatment or I will have a harder time tolerating the drugs. So, I've been able to focus on resolving several issues and feel like huge weights have been lifted off my shoulders. Now, I'm ready to have my bones scanned, my heart echocardiogrammed, and my emotions validated by the social worker. I still have lots of questions about the treatment and how it will affect my daily life. I'm hoping to have a very clear picture of what the next 4 months will bring after Tuesday's appointment.

In foob news, I went back to bra stuffing 101 and discovered that a $38 silicone insert can easily be replaced by 50 cents of worth of cotton balls to keep the right bra cup from collapsing. I have an idea to place a handful of organic cotton balls in a pretty pink hemp drawstring bag and sell it in the Nordstrom lingerie department as a green breast prosthesis. Environmentally friendly and practical! What mastectomy shopper could resist?

Have a wonderful Memorial Weekend!

Foob Fun

So I've been taking photos every 5 days or so for the foob scrapbook and am amazed at how fast my body is healing. All of my bruising is gone and the only scabbing left is on my incision and the nipple area. (I'm still hoping there really is a nipple under there). Both of my drains have been removed and those incisions are healing up too. I do still have a good amount of swelling on my side next to the foob, but am being told it's all normal and will eventually subside. Not one to sit and wait, I've started receiving lymph massages to stimulate the lymph system and hopefully get some of the extra fluid/swelling/crud to work its way out. I slept on my side last night for the first time since surgery - I was afraid to with the drains in - and this morning everything was where I left it last night. Progress! Even with the healing going so well, there are some odd things to get used to. I still don't have much feeling from my armpit (totally numb) to my elbow (kind of numb) or on my side next to the foob. I don't have anywhere near a full range of motion with my right arm either even though I am doing my assigned exercises almost every day. One weird thing I've noticed is that when I drink hot or cold drinks I can really feel them heading down through my chest - it's almost uncomfortable - and I think it's because there is no fat or breast tissue for insulation any more. Or it could all be in my head... Dressing with the foob is still not an easy task. My left breast is at least 1 cup size bigger than the foob, but the foob nipple is 1" higher than the real breast (I know because I was left home alone with a tape measure). A regular bra fits the left side fine, but the cup collapses on the right (and yes, I've tried the silicone bra stuffers but it tried to escape from the bra and then I had 3 breasts) A sports bra supports the left side, but is very tight around the swelling next to the foob so it's not very comfortable. I've resorted to wearing tank tops with built-in bra shelves. There is some support for the left side and it's comfortable to wear. The only issue is there's no hiding the size/height discrepancy. I have kind of a diagonal cleavage thing going on. Oh well, it's only temporary. That's my new motto by the way. It's only temporary. The lopsided foob, the chemo, the hair loss, it's all temporary. I haven't found the humor in chemotherapy yet, but the foob is pretty entertaining.

On the chemo front, I'm still waiting to hear back from the 2nd oncologist before any final decision is made. I'm researching wig/hair options just in case and have discovered a whole new world I never knew existed. Did you know you can buy eyebrows made of human hair that will stay glued to your face for 2-3 weeks? Fascinating! Maybe I can adjust them to look suprised or angry all day. "What's she so mad about?" "Oh, she's not mad, it's just her fakebrows." The fun potential is endless!

Chemotherapy & Herceptin

My appointment with the oncologist was moved up, so I met with Dr. Schwab at UCSD yesterday. I was expecting to hear that my diagnosis without chemo was an 80-90% survival rate and with chemo it would improve to 90-95%. I was expecting to learn about my options and be able to mull it over and make a choice about what to do. Instead I learned that my cancer is HER-2 positive, which means it is very aggressive and that without chemo I am facing a 50% chance of cancer recurring within the next few years. The oncologist said this type of cancer commonly recurs in the brain or bones. With chemo the chance of the cancer returning is reduced to 10-15%. Hearing that I have a 50% of getting brain cancer within 3-5 years scared the crap out of me. And lucky me, the cancer is also ER positive (estrogen receptive) so I would also need to do hormone treatment to reduce the amount of estrogen in my body. Only 10% of cancer is both HER-2 and ER positive. Lucky me! I am sending my pathology report to at least one more oncologist for a second opinion, but am feeling pretty pessimistic. The remainder of my appointment was spent discussing the type of chemo that is best for me, side effects of the drugs, and resources available at UCSD. The doctor recommended I take Herceptin - a drug for HER-2 positive cancer. This is given intravenously every 3 weeks for a year. I would have a port placed under my skin where the drug would be administered. Then there are 2 types of chemo that would work for me. One is 8 rounds (every 3 weeks for 24 weeks) and easier to tolerate. The other is 6 rounds (every 3 weeks for 18 weeks) but harder to tolerate. Both are aggressive drugs with the usual side effects including hair loss.

It's a lot to deal with right now. I've gone from believing I'm 100% cancer free to hearing a 50% chance of fatal cancer. The doctor said this type of cancer would have killed me 10 years ago. It's so weird to think how someone who hasn't even had a cavity can receive this diagnosis. So I'm worried (it's what I do...) I'm worried about how the kids will react, how I'll be able to take care of the kids if (when) I'm sick from chemo, what I'll look like bald, if I can handle starting school in Sept, how I can get a job, and if I can make all the home Chargers games (priorities people!) Suddenly the size of the scars from my surgery doesn't seem like such a big deal. And my reconstruction is postponed until after the chemotherapy. My poor kids - most are embarrassed that their mom wears dorky jeans - mine have a bald, lopsided, dorky jean wearing mother. I know I've often commented on the pride I take in embarrassing my boys, but I'm going to stop the uncool good-bye kisses and public singing until this is done to save them some dignity.

Next steps? Well, I've cried more in the past 2 days than I have in a long time, so I'm hoping that's over. I need to talk with the the 2nd oncologist before anything else. Assuming this diagnosis and treatment is correct, I'll need to have a bone scan, a few heart tests, have a port for the drugs implanted, be fitted for a wig and meet with a UCSD social worker before the chemo starts. I'll be spending a significant amount of time at UCSD over the next few weeks.

On a positive note, my last drain will be removed on Monday - 18 days of drain wearing will be complete!

Not-So-Good Pathology Report

Writing about boobs and foobs is much more fun that writing about cancer. But unfortunately, just when it looked like my cancer writing days were over my doctor called with my pathology report from surgery. My DCIS (ductal carcinoma in situ - all cancer contained in the ducts) progressed to also be invasive. They found a 1.5 cm tumor in the breast tissue as well as tumor cells in the lymph node they removed. I have an appointment on Monday with a medical oncologist to learn about the recommended course of treatment. My surgeon said it will most likely consist of chemo and tamoxifen (estrogen reducing drug). I'm really disappointed and back to feeling overwhelmed by the diagnosis. I've met enough people who have been through this to know that chemo is not easy and I am worried about how the kids will react. They've been through a lot this year and deserve a carefree summer of beach days and water sliding. I'm trying not to freak out until I have more information on Monday.

On a positive note, one drain is much more comfortable than 2 and much easier to dress. I almost feel like a normal person again - very lopsided, but normal :) It looks like I'll be able to have my remaining drain removed tomorrow or Monday. That will be heaven!

My Post-Op Appointment

I went to my 1st post-surgical appointment today. I didn't get all my questions answered, but it was a good appointment. The good news is 1. I can drive again!, 2. 1 of my drains was removed, and 3. my foob is healing as expected. I was VERY excited to have a drain removed, until I got home and realized the drain with the most fluid was the one that was removed. I called the doctor's office and was told it doesn't matter which drain was removed and that any excess fluid would be removed by the remaining drain. That makes no sense to me since the drain tubes are pulling from different places in my body and I need to track the amount of fluid drained by drain number. The drains are removed when the fluid removed gets to a low number. So if drain #1 is draining 10ml/day and drain #2 is draining 40 ml/day, drain #1 should be removed. But in my case, the drain with the most fluid was removed. I am nauseous with worry over it. I'll feel better tomorrow if I don't wake up leaking gross whatever kind of fluid is draining from the incision where the drain was removed. So the removal of the drain is kind of a bitter sweet thing right now. I do feel better about how the foob is looking. I mentioned in a previous post that I was worried about the nipple surviving and the doc said it looks great and could look worse before it gets better. I'm not sure how that's possible, but she's board certified and I'm not, so I guess I'll trust her.

On the not-so-great news side, I've gained 4 lbs since surgery. It's either because you all keep sending me such yummy food or this expander implant weighs way more than I thought. I'm hoping it's the implant, but asked about exercise just in case. I was told no exercise for 6 weeks. 6 weeks! Not even walking Torrey Pines because that will increase my heart rate and increased heart rates are bad for wound healing. It's bad enough for bikini season that my chest is completely lopsided, but now I'll have a fat ass to go with it. I guess I'll be lounging at the Children's Pool with the seals - I've heard hanging with seals make you look thinner.

The other bummer part of the appointment is that the pathology report was not back yet. I still don't know if the cancer is estrogen receptive or how aggressive it was or if it was invasive at all. So I don't have any idea yet about additional treatment.

I'm scheduled to go back for another appointment in a month. Assuming that everything is healed as expected, they'll fill my expander a bit more and I'll be one step closer to completing reconstruction. Before then, I'll have my remaining drain removed and learn about the pathology report. Thanks for all of your support!

9 days after surgery

I can't believe it's already been 9 days since surgery. Some things I am pleased about and some things are pretty frustrating. First the good news. Mom and I are continuing to live together mostly harmoniously 24/7. On Mothers Day Eve, I have to say, there is no way my recovery would have been this easy without her. She is part nurse, part babysitter, part cook, part chauffeur - she has been amazing! Also on the good news front, I've gone 2 days without pain meds. I still have some stiffness and an occasional shooting pain, but nothing so uncomfortable that I need to medicate. The discoloration and bruising is subsiding a bit. My foob looks like it was hit with a baseball bat rather than something from alien, so that's good right? (I cannot take credit for the word "foob" - it is a commonly used term among mastectomy gals with warped senses of humor). Another plus is that I am not as tired as I was a few days ago. I have much more energy, have walked to school and back, been to birthday parties and baseball games and even skipped my nap today.

On the frustrating side, I cannot complain enough about these damn drains hanging from my body. They won't be removed until they are draining less than 10 ml a day. Unless there is a sudden, dramatic reduction in fluids being drained, I will probably be wearing these things to opening day at the track. One of the drains is still pulling 60 mls a day. Ugh! I sat on the drain tubes as I was getting out of the car yesterday and one tube got caught on a kitchen drawer pull. Both times I could feel the stitches and tubes being ripped from my body. I was not happy. I can feel where the drains are attached to my skin all the time because they are located exactly where every bra I own crosses my body - even my new super stylish surgical bra. Plus, they are a nightmare to dress. Yes, I could wear XL t-shirts every day (and have been most days) but I am too vain to wear these in public very often. Plus after the great closet-cleanse of 2009, I only have 3 left (USD, Chargers, and a bar in Bozeman where Chris worked).

My post-op appointment is Monday afternoon. I am hoping for good news about the cancer pathology report and suggestions for further treatment (none!) and to hear that the foob is healing as expected. I won't gross you out with the details, but I have become a teensy bit worried about the nipple surviving. I am hoping my doctor will allow me to drive and will give me a timeline for the remainder of my reconstruction. And if she removes the drains I will not complain :)

You have all continued to be such amazing friends - thank you for all of your support, encouragement, and gentle hugs. I'm wishing everyone a happy and healthy mother's day!

My big day

I saw the boys on Saturday for about 10 minutes when I came home from the hospital. Jake took one look at my drains and asked, "Are you wearing those to my school?" So I knew then that at school pick-up Monday at 2:30 I needed to be looking and acting as normal as possible - surgery or not. That motivated my big day today. I haven't wanted to unwrap the bandages for fear of the wounds they were protecting. But I needed a shower to go to school today, so unwrap I did. I made sure to sit down before looking and I'm glad I did. The surgeon removed my cancer and breast tissue and replaced it with something from Alien. My foob looks like nothing human I've ever seen. On my side under my arm are 2 small incisions where the drain tubes are sprouting from my body. This was too much for my brain to wrap around so I wrapped an ace bandage around my body to hide those. That was a great idea since it gave me something to attach my drains to while I showered. So, I managed to wash all human and alien parts, dry my hair and get dressed in normal clothes. I was then exhausted and needed a nap. Good friends brought lunch and I sat outside and ate with them. So fun and nice to enjoy the beautiful day. After lunch it was time to pick up the boys. I thought I'd be ok walking to school, but was overruled by mom. So we drove to school and I walked from the car to the school gate. Mom was right to overrule my walk because just standing there waiting for Jake I felt light-headed. I got to see lots of friends at school and Jake had a big smile when he saw me. Totally worth the effort! Then we drove to Ryan's school and I waited in the car. With both boys in the car we went to Starbucks for an after school donut. I walked from the car to the Starbucks counter then outside to sit in the sun. While sitting there, Jake said it was good thing I wore a black shirt because it hid my "things" (drains). It made me happy that he was comfortable. Then we came back home and yes, I took another nap.

Thank you so much to all the friends who have brought food and sent cards and gifts. I am so lucky to have such an amazing community around me. For now, I'm going to rest on the couch and tomorrow I plan to walk from my bed to the couch and back. I'm beat!

Surgery

Here's a recap of the past few days... Thursday at 11:30 mom and I checked into the hospital. If you ever need a hospital, this is the place to be. Wood and marble floors, a piano player in the atrium, lots of light & windows, room service and HBO. Thornton Hospital looks more like a hotel than a hospital. It's fantastic. So, we checked in then went to radiology for my dye injection in preparation for the sentinel node biopsy. I was expecting a giant needle, but instead received 4 small injections around the nipple. This burned terribly for about 15 seconds and then was done. No big deal at all. After 15 minutes I went into a big round camera thing - kind of like an mri machine, but much shorter. The technicians were able to see the dye in my body and see the 1st lymph node, so they printed 3 photos and sent me to pre-op.

At pre-op I was in bed #8. The nurse took my vitals and I got into a hospital gown. The doctor came in and drew a map on me. I signed some papers. I managed to hold it together until the nurse was putting in my IV. Then everything became real and I started to cry. After the IV it was time for the nerve block to be administered by the anaesthesiologist. I had to sit on the side of the bed and receive 4 injections into the right side of my back. This would block the pain during and after surgery. I cried my way through this process - first because I was already crying and second because this hurt like like hell! Man did that hurt. So with crumpled tissue in hand, I was then wheeled into the operating room. A nurse injected "a margarita" into my IV. I vaguely remember seeing the operating room.

Next I remember opening my eyes and seeing the clock read 5:00. Then I remember a clock saying 6:00 and wondering why I couldn't keep my eyes open. A nurse took my vitals, told me I was out of surgery and that I could go to my room. I was wheeled on my bed through the hospital, met up with mom and dad on the way and was admitted into my room. Mom told me she had talked with my doctor and that the surgery went well and that my lymph nodes were clear. That was great news that was overshadowed by my hunger. I was starving! So I ate some lemon jello (yuck) and some apple juice. When the nurse checked my drains she noticed some bleeding. Actually she noticed that my hospital gown, dressings and bedding were all soaked with blood. I was bleeding from one of the drain sites. Apparently this is not a good thing, so the doctor was called and I was cleaned up with new dressings. The doctor said if the bleeding didn't stop I'd need to go back into the operating room so they could find the cause of the bleeding and stop it. I was watched pretty closely for a while and thankfully the bleeding subsided. The real bummer was that I was no longer allowed to eat or drink because of the chance I'd be back in surgery. Plus, with the darn IV in my arm, I had to pee every 45 minutes. This was a process, because I had to turn off and disconnect my leg squeezers (big blood pressure cuffs that squeezed my legs to prevent blood clotting), get out of bed using only 1 arm, and wheel my IV into the bathroom. By the time I got back into bed and was reconnected to the leg squeezers, I had about 30 minutes before the whole process started again. Very annoying. My mom spent the night at the hospital with me. Even though I could have come home on Friday, we decided to stay another night just in case the bleeding thing started up again.

Friday in the hospital was good. I got some sleep, got to eat, got off the IV and the pain wasn't too bad. The nerve block has not yet completely worn off, so I feel stiffness and bruises, but nothing unbearable. The pain is much better than I thought it would be. I'm home now. The worst part now are the two lovely grenade-looking drains hanging from my body. They are disgusting, heavy, and in the way. It is nearly impossible to disguise them with any clothing.

So, right now, I'm home, cancer-free, and relatively comfortable. I'm sleeping a lot and mom's not really letting me move. I'm trying to be a good patient. I have not yet opened my bandages to see the wounds or my new foob (fake boob). That will be an entirely new blog! Thank you so much for all of your prayers and notes. I feel very supported and loved and am very thankful for all of you!