How I'm Feeling...

Update - Sunday:
I slept really well last night and was treated to breakfast in bed from Owen and Will - cutest thing ever.  I felt good enough to go to church with the family for an hour.  I took some almonds, water, and ginger tea in a travel thermos with me to the meeting so that I could keep my tummy settled and make it through.  I was sipping on my tea in sacrament meeting and made some kind of lame joke to Bradley about if he's ever seen anyone drinking tea in the chapel before - I got the "I love you but don't try to be funny look" to which I replied, "don't worry, it's herbal." and then I got the full on teenage eye roll - ha ha, best part of my day!  I came home and ate (I am craving weird foods) and then had a lovely nap.  I feel about 75% today which makes me thrilled.  Having said all this, I have to add a disclaimer: If you see me out and about and I'm not chatty or smiley or go out of my way to talk with you, please do not be offended.  I have moments of being chipper, but I am an introvert at heart so it takes all of my energy sometimes to be social.  When I'm not feeling well, being companionable is the first thing to go... 
Sorry - it's not you, it's me. ;-)  Have a wonderful Super Bowl Sunday!

Update - Saturday Night:
Today was kind of rough.  I didn't get out of bed until after 4:30 in the afternoon and even then I was just laying on the couch.  Owen was so cute and told me that he learned on Phineas and Ferb that you start to feel better if you get out of bed and move around a bit.  With that endorsement, I popped right up. ;-)  Even though I'm really nauseous, I still haven't puked so I feel super grateful about that.  I should start feeling better in the next day or so fingers crossed!!

Update - Friday Night:  
Still feeling ok (you know, all things considered).  Bone aches are starting, and I'm still nauseous, but no vomiting so I feel very lucky so far.  I had a nap from 4:30-6:00, then had an amazing dinner brought by neighbors.  I fell asleep again from 8:00-9:30 and now I'm ready for bed again... this is turning into my sleep diary!  Here are some pics of things that put a smile on my face today:

Also, Owen just walked past in a sleepy daze to go the the bathroom.  As he walked back towards bed he gave me a kiss, told me he loved me, and told me he'd pray for me all night in his dreams.  I am a very blessed person. 

Original Post:

All is good so far in the land of chemo recovery; knock on wood!

It was weird going to bed last night because I kept wondering when the really bad nausea would hit.  I woke up at about 7:30 with an uneventful night and helped get the little boys off to school.  I've decided that I can't keep waiting anxiously for my side effects - it'll drive me crazy!  So, I'm just going to go about my day like normal(ish) and take lots of rest breaks.

My head still hurts and I still feel mildly queasy but it's manageable... it feels almost like it does right before a migraine headache comes on.  I'm craving warm foods and I'm still drinking lots of water and ginger tea to settle my stomach.

The only other side effect is that I'm tired.  After I got the boys to school I went for a walk.  It felt good to get my blood flowing but it wore me out so I had a nap from 10-1.  I'm thinking that a nap again at 3 or 4 sounds like a good idea! :-) 

If anything changes I'll post on here, but know that so far I'm doing better than I expected!  Yea!!!

Chemotherapy - First Time!

My first chemo treatment was at 9:40 this morning.  It was a rough morning for emotions, this was the most nervous I've been for any of my treatments.  I got the boys off to school with a smile but the closer I got to my appointment the more I started to melt down.  Poor Matt and Lauren got the brunt of my orneriness and tears. I had a housekeeper scheduled to come over right after we left and I freaked out and shut all the windows and told Lauren to ignore the door if she came.  This sounds so stupid now because it was obviously going to be a help but I wasn't thinking clearly; it just seemed stressful to even think about one more thing.  As we pulled out of the driveway we saw my cute new housekeeper (her name is Patricia and she usually gives me about 10 hugs every time she comes over - she's the sweetest!) and Matt asked her if we could just reschedule.  She looked concerned but said yes.  After we drove about a block or two away I started to cry (again) because I realized that I was taking away this new friends' job and money for the day without any prior notice so I told Matt to turn back around.  He is so amazing to put up with my crazy, reassuring me that he'd do whatever I wanted.  I stayed in the car and cried some more while he got Patricia lined up for the day.  (And fast forward to after my treatment... it was SO nice to come home to a clean house!!)

Ok, so to back up a little, I started the day by putting a numbing cream on my "port-o-cath" about an hour before treatment.  You're supposed to lay the creme on thick and put plastic over it until the nurse accesses the port.  This was one of the things causing me stress because I couldn't get my plastic cap to stay taped in place.  I was going to wear my "Team Heidi" t-shirt but then realized I needed something button down so they could access my port easily.  I'll be wearing it tomorrow the help me when the nausea supposedly starts!  The following is a picture of my port after the nurse had me hooked up.  If you look closely, you can see the small tube that runs from the port and ties into my jugular vein (at the top of the photo).  {Shiver}  As soon as my nurse (easily and painlessly!) accessed my port I instantly became more calm.  Smiles for the rest of the day!!

My treatment is almost all intravenous.  I will do this regimen 4 times, every other week and then switch to completely different drugs.

• 15 minutes of Emend (Anti-nausea meds - most common side effects: tiredness, hiccups, constipation or diarrhea.)
• 30 seconds of Aloxi (Anti-nausea meds - mcse: headache, constipation.)
• 20 minutes of Decadron (A glucocorticoid to assist the other drugs - mcse: difficulty sleeping, fluid retention, weight gain, moodiness and irritability.)
• 10 minutes of Adriamycin (Chemo drug - mcse: decreased white blood cell count, nausea, vomiting,  decreased platelet count, loss of appetite, darkening of nail beds and skin creases, hair loss, mouth sores.)
• 60 minutes of Cytoxan (Chemo drug - mcse: all of the above for Adrianycin, plus headaches; especially if administered too quickly.)
• An injection in the arm of Neulasta (Stimulates white blood cell production - mcse: bone pain, stinging at injection site.

My drugs are the strongest they prescribe for my variety of breast cancer chemo (remember everyone's cancer can be totally different!).  They're giving me this aggressive treatment for a few reasons but the two biggest are 1) that the cancer moved into my lymph nodes and 2) my age and health make it easier for me to handle the stronger drugs.  The Adriamycin drug is the doozy... it's referred to as the "Red Devil" and it's got some pretty yucky risks.  The nurse has to manually push this drug into my veins instead of just go through the IV stand so she can monitor that it's going in correctly.  If it leaks out of my veins it can eat away my tissue, ugh.  It's also the reason why I needed the heart test.  This drug can cause heart problems and/or leukemia in a small percentage of patients.

This is my adorable nurse Lisa.  Matt and I are in awe of this woman - she's the one I told you about that is a breast cancer survivor herself.  She is kind and loving but in a upbeat way.  She was busy today and there were literally 2-3 times when we saw her running around the room to grab warm blankets or meds for patients.  She called everyone by name but would also drop the occasional "darling, sweetie and cutie" to patients and spouses alike.  I heard someone recently say they hated being referred to like that because they felt it was condescending... I am of the opposite opinion - I love it!  This amazing woman can call me or Matt "darling" anytime!  The room had about 7 patients in it and we were all receiving different treatments for varying things.  There was one sweet woman who looked about 80 and it broke my heart to see her hooked up.  I didn't talk to her because she was asleep most of the time so I don't even know if it was cancer or a blood disorder or what.

Matt and I passing the time.  I love these to pics of him because they are SO his personality.  The first one is as he's dialing someone for work; he's getting his goofy out of the way.  The second picture is when he's actually on the business call.  He does a personality shift, gets all into it and uses his hands a lot.  His main move is the one he's doing with his bottom hand - he'll hold it up and down like that and then tap the table/desk periodically for emphasis, like he's going through his check list.  Ha ha!  We spent the day together listening to split headphones, chatting, and checking the sweet messages we received.  He also went on a smoothie run for me and I got some fun reading time in.  The treatment was long, but it was physically and emotionally easier than I thought.

So we left the chemo treatment center at about 1:30 and then grabbed some meds.  The rest of today has been just fine.  I've had a tiny bit of queasiness but I've been able to head it off by drinking lots of water and ginger tea.  It's also helped to keep my tummy full; trail mix is what I've been craving.  I have a headache and a bit of blurry vision (like when I've got a migraine coming on) but I had tylenol and a big nap and that took the edge off.  

The kids are doing good (Bradley's been dealing with chiropractic neck issues but turned a corner today), Matt's behind on work (ha ha, always) but doing good, our family is being really well taken care of by friends and neighbors, and I'm looking forward to a good night of sleep and crossing my fingers that tomorrow and Saturday won't be as bad and I'm anticipating!  I'll do a quick update on here tomorrow to let you know how things are going so you won't have to text or call.  Love you all!

Heart Test - EKG and RBC

I had my heart test today to make sure I'm strong enough to have chemo.  I won't get the results till tomorrow but I'm not worried about it and neither is my oncologist, he says the test is just a matter of "crossing t's and dotting i's."  I went into the hospital this morning and did lots of waiting, then they took some blood (to add radioisotopes to and use in my test) and I did some more waiting.  Here are some of my boredom pictures after I got tired of all the distractions I brought...

The pink bracelet I'm wearing is from my ward.  In addition to me, there is another gal who's been fighting cancer for over 5 years and of course there are other women fighting various life trials.  The sweet relief society made these bracelets for us to all wear in support of one another (the other side says "fight like a girl").  I was alone at my appointment today (by choice - no need to worry or offer to come with me the next time, lol - sometimes I just like to be independent). However, while I was sitting there looking at my bracelet I was reminded that even when I'm doing something by myself, I am never alone.  When I got home from the hospital, I read my weekly e-mail update from our Relief Society and this was part of it:

Our thoughts and prayers continue to be with all the sisters of our ward, but especially at this time, we are mindful of Heidi Green.  Heidi, you have hundreds of cheerleaders rooting you on as you so courageously fight this cancer that has no idea who it's up against!!  We are inspired by your strength and your humor.  You are a bright light to all of us and we hope we can be that bright light to you in the coming weeks and months ahead. 

Cancer most definitely is crap, but this crap has nothing on you!!  Fight Like a Girl!!  SISTERS TOGETHER!!  We will be with you and here for you every step of the way!!  xoxoxo!!

As I have seen pink bracelets everywhere I've gone this week, it's been incredibly difficult to keep my emotions in check.  The support and love you have for one another is overwhelming.

Yes, it totally made me cry.  I am very blessed to be surrounded by such wonderful people... to my amazing ward, neighbors, friends and family - thank you all, I love you and please know that I'm so grateful for you and praying for all of you in return as well!!

Ok, moving on to my test.  It was called an RBC nuclear scan and they also did an EKG test.  The electrode you see in the first picture was for the EKG.  They put one under each collarbone and one on the side of my abdomen, hooked them up to some cords and then hooked the cords to a machine.  For the RBC, they added a radioisotope to the blood they'd previously drawn.  This process tags the red blood cells and then they inject that blood back into my body.  I layed on a bed and a scanner detects the radiation and charts how it moves through my heart.  They scanned me from two different angles and each scan took about 10 minutes (they had to wait for my heart to beat 500 times for each test).  I went home after being at the hospital for over 2 1/2 hours and then a few hours later I got another call that they didn't get enough images so I needed to come back in... uuuggghh!  Luckily, I've got babysitting age kids so I could rush back to the hospital as soon as they called and get back home before dinner.  Even more luckily, the radioisotope is in my body for 12 hours so I didn't need to get any more blood draws or injections!  Four more scans later (another hour, give or take) and I was finished. 

Big day, but one more thing checked off my list!  Tomorrow is a complimentary "Look Good, Feel Better" class given by the American Cancer Society to help women with makeup and beauty tips that help counteract the side effects that accompany chemotherapy.  Fun!! :)

Surgery - Double Mastectomy with Expanders Placed

January 9 (Friday) I went into the hospital at 7:45 AM for my surgery.  The nurse was great and there were no problems with the IV this time (they couldn't use the port they put in during the last surgery because it was too close to where they were doing surgery).  As we were talking with the nurse she mentioned that her sister had breast cancer a few years back.  When we asked how she was doing she replied, "oh, she passed, she didn't catch the cancer soon enough..."  I felt so bad for her loss, and she was such a kind person, but this would have been a good time for her to lie!  (It seriously didn't bother me, I just thought it was too funny to leave out).  This go around with surgery went smoother and quicker than anticipated.  Both Dr. M and Dr. R felt like things went perfectly.  I remember being moved from the surgery table to the bed and saying that the move was hurting, but I must have fallen back to sleep because the next thing I knew, I was in my recovery room with Matt.  I had a difficult time getting on top of my pain management at first, but once under control my recovery went well.  I stayed in the hospital until late the following afternoon.  You can see in the middle picture that my posture is kind of hunched forward, that's something I'm still working on - those muscles are really tight.   After I got home, I spent the next few days either sleeping or moving around in a sleepy stupor, but everyone around me was so patient and helpful.  Jackie and Biffy took my kids for a couple nights, we were brought multiple delicious meals, and Matt was able to work from home.  For the first few days I needed Matt's help with almost everything, especially getting in and out of bed.  Even pumping the hand soap was a difficult chore!  

January 14 (Wednesday) I went to my post-op checkup with Dr R and everything is progressing well.  I could've gotten one of my drains out but Dr. R said he's never taken them out that early so he'd feel more comfortable waiting till Monday.  

I've trying to gradually reduce my meds but today I decided to completely bag the Percocet/Lortab stuff.  It makes me feel loopy, and yucky.  I was getting so mixed up that I was started to cry and was worried the cancer moved to my brain... Matt reassured me that I'd just been under heavy narcotics during the week and I'd feel better once they were out of my system.  A few of my crazy moments: 1) Matt told me of someone who he'd just heard of that was also diagnosed with cancer.  I said, "I should call to talk with her since I'm pregnant too."  2) When Matt asked what was in my smoothie I was drinking I replied, "ketchup!" and 3) We were talking about his brother in Arizona and I mistakenly said he lived in Florida.  Bradley and Matt both corrected me and said Arizona and I replied, "ya, I know, Florida."  Oh boy... 

One more tidbit of info - I've started to exercise!  Now when I say this, don't get any grand ideas in your head.  The first time I did it I walked on my treadmill (with Lauren reading nearby, just in case) and I did my entire walk at a whopping 1 mph!!!  I had to hold onto the handrails and let me tell you, that 1 mph was making me breathe hard, lol - but it made me feel so much better to just move!   

January 19 (Monday) My drains were removed today!!  I felt like I turned a corner last Friday with my recovery (and even started to drive a little bit) but Monday was an even better milestone - I'm feeling good!  

This was my 4th time seeing Dr. R and my opinion of him has done a complete 180 - I love him now!!  During the previous appointments, he'd make comments like, "these are gonna be sexy," or after my surgery he looked at how I was healing and said everything was "looking hot!"  I think he was trying to be cheerful and easygoing and Matt was with me the whole time and he thought the doctor was just trying to create a positive, fun atmosphere, but it felt weird.  I kept telling Matt before this appointment that I was going to tell off Dr. R if he said anything like that again. When he (of course) did say something at this appointment, I said, "don't say that, say they look healthy!"  I'm so non confrontational... I told him off good and strong, LOL!  Matt interjected and clarified by telling him that those comments made me feel uncomfortable.  The thing is, just expressing my feelings to him made me feel in control of the situation and instead of focusing on the one or two odd comments he made, I was able to truly see what a kind, knowledgeable doctor he is.  It also left me in a better headspace to understand the entire situation... I've been in such a fix-it, healing mode that it's been hard to shift my mindset to the way I might feel after the cancer is gone.  Matt mentioned that all my other doctors have a job to heal and fix the cancer - this is not Dr. R's job... his job is more along the lines of taking these ladies that have been through the wringer and helping to heal their sense of self and womanhood.  He's trying to make these appointments lighthearted.  Seeing it from that perspective, made me really like him a lot.  Plus, both Matt and I joked/agreed that Matt would probably be an irreverent, quirky kind of doctor just like Dr. R!

January 20 (Tuesday)  Today was my chemo class!  Matt was out of town so Lauren came with me and we recorded the info for Matt.  The nurse was wonderful - she has the added experience of being a cancer patient herself a few years ago and she also has experience being the caretaker as her husband recently went through cancer as well.  What an amazing perspective she brings!!  The class was a lot of stuff I've heard or read before but the nurse walked me through each individual drug they'd be using, how long each would take, and what all the side effects were.  They were very careful to stress that every patient responds totally differently to chemo, however there is a similar pattern between a lot of the patients:  Days 1-3 are the sickest, days 4-6 you start feeling better, days 7-10 are when your white blood count is the lowest so you feel super tired and need to be extra careful about germs, days 11-14 you start feeling better and then the next day you start the cycle all over again.

January 22 (Thursday)  I met with Dr. S today for a checkup and to set up a time and date for my chemo.  He had the pathology reports from the surgery and they were fabulous!  No cancer at all in the left breast (that tumor was truly benign) and all the margins are completely clear on the right breast.  It was so great to hear good news from this pathology report!  Dr. S mentioned that in hindsight we probably would have done the chemo before surgery if the MRI had shown how extensive the cancer truly was.  However, both Matt and I feel good about the path we've taken.  It was an emotional month with the surgeries but with the mastectomy we'll never have to second guess whether or not all the cancer is gone.  

Dr. S says I'm healing well and look ready to start the next phase of treatment.  I need to have a heart test on Monday at the hospital, but assuming that goes well, we've decided to start on next Thursday, January 29th at 9:40 AM.  It sounds crazy, but I am so excited to get going.  Don't get me wrong, I know it's going to be horrible.  However, I'm so blessed for these medicines and I'm excited to kill off all those deadly cells in my body ASAP so I can reclaim my life.  Bring it on - I'm ready!!

This is my cute oncologist Dr. Stinnett.  He works with Utah Cancer Specialists and I love him! (As a side note, he usually doesn't have a goatee and was hesitant to get his picture taken with it on, ha ha.) I'll be meeting with Dr. S for the next 10 years to make sure I don't have any recurrences.

Christmas with Cancer - How things were throughout December.

December 6 (Saturday)  I got a pixie cut in preparation for chemo!  My cute sister-in-law Cassie cut it for me.  Although it took some getting used to, I'm really glad I cut it.  Doing so, gave me come control over losing my hair, and when it finally all falls out, I won't have as much of a mess to deal with.

Week of December 8 - I call everyday for my BRCA results; I need them so we can finalize a decision regarding my surgery.   Finally, on Thursday, the nurses call to see where my results are.  The company doing the testing hadn't done a thing because my insurance wouldn't cover it.  Um, communication anyone?!?!  Our choices were to either pay $3000 out of pocket for the testing and wait another two weeks for the results, or redraw my blood and send it into a different company and wait three weeks for the results.  The whole BRCA thing was weird because the company I originally sent my blood to had a patent on testing the gene.  There were a lot of court decisions recently on whether a company had the right to patent a gene, and obviously they decided you couldn't have those rights, so decided to redraw the blood and send it to the other company.  However, we still had the issue of surgery, which we were putting off till we had the BRCA results.  We decided since the chances of me having the gene were so small (less than 10%) that we'd chance it and just do the lumpectomy.  We didn't want to wait for the results because that would just push back my treatments.  This was the second time (the first time being right after my mammogram/ultrasound) that I really broke down.  This was a hard day for me and all the uncertainty and waiting finally took it's toll. 

December 15 (Monday) I went in to get my blood drawn again for BRCA test #2 and completed all my admitting paperwork for the hospital.
I also submitted an application through the marketplace for different insurance next year.

December 16 (Tuesday) Surgery with Dr. M was today around noon.  I was scheduled for a lumpectomy, axillary lymph node dissection, and the placement of a port.  The port is a small device that is placed under my skin just below the collarbone.  It hooks directly into my jugular vein (every time I say that I shiver...)  The chemo will be delivered through that port so they won't have to worry about giving me an IV each time I go in.  If I were to do an IV each time, my veins would be under a lot of pressure and there's a possibility of vein collapse; the port solves that problem.  

We walked into the hospital waiting room and saw Matt's mom waiting there to keep him company during the surgery; it meant a lot to him.  They took me back for surgery prep, the nurse was nice but didn't do a great job with the IV.  The nurse in the OR was very caring and smiled and held my hand while they put me to sleep... no matter how big or small the surgery, I think it's nice to hold someone's hand when you're going under.  The surgery was outpatient and I was ready to go home by about 5:00 PM.  Nana and Papa had come to take care of the kids and the ward brought by dinner.  It was so nice to be well taken care of.  Matt waited until the next morning to tell me that Dr. M was concerned with how the surgery went.  He wasn't confident that he'd been able to get clear margins because the cancer was significantly larger than what had shown up on the MRI and it looked like it had spread "fingers" throughout my breast.  He also took out more lymph nodes than the 1-2 he thought he'd have to because there were multiple that were visibly affected.   We need to wait for the pathology reports to be sure of any of this news so we're trying to be optimistic.  My recovery from this surgery went well.  I had a drain tube coming from under my arm where the lymph nodes removed and I also lost a lot of movement and sensation from their removal.  The doctor thinks it should return close to normal, but having lymphedema as a side effect will always a concern, especially after radiation.

December 19 (Friday) I went in for my post-op appointment with Dr. M.  He says I'm healing well but we he'd called for the preliminary pathology reports and what he feared during surgery was actually the case... the cancer had spread throughout my breast and I had enough lymph nodes that were positive with cancer so far in their testing that I am now considered Stage III.  Cue breakdown #3... nothing like cutting your mortality rate by 20-30% to make your day turn sour.  Since I'm writing this with hindsight, it makes it sound like I was full of tears throughout this month which was actually not the case.  I had moments of fear or sadness but overall I was very upbeat and loving life.  However, despite my attempts at optimism, reality trumps it sometimes and we all need a good cry; this was one of those times. 

Just as a reference point, there are a variety of places that give you the survival rate for breast cancer.  Stage I is 100%, Stage II is 93%, Stage III is between 51-72% depending on the subtype, and Stage IV (when the cancer metastasizes to other areas in your body) is around 22%.  I am choosing to believe with my (relatively) young age and (relative) health, I will definitely beat this crap and be in the 51-72%!!

December 22 (Monday) This was a big, amazing day.  I was hosting the Pierce family party at my house.  The whole family was concerned that I was hosting it, but it gave me something to look forward to and I was so excited to see everyone.  My mom and Kim came down for the day to help out and we had Jackie's kids play with my boys while she and Colby took Blake to the hospital for ear tubes.  When Jackie dropped off the boys she gave me a shirt that she'd made that had "Team Heidi" embroidered on it.  She, Mom & Kim were all wearing one under their sweaters as well.  I, of course, cried; it was so sweet!!  I left everyone home for a while so Matt could take me to Dr. M to get my drainage tube removed (hallelujah, that thing was annoying).  When I returned home from the doctors, everyone from my family was at the house ready for the party and they were ALL wearing the shirts.  Jackie and her husband Colby had embroidered over 40 shirts!!! Seeing everyone dressed up in support of me was one of the most overwhelming experiences I've had.  I hugged everyone and smiled for a while but I snuck back into my bathroom after a bit for a cry... I didn't want to scare anyone with how emotional I was feeling and give them the wrong idea... I felt so much love and gratitude and blessings.  Okay; I'm getting seriously emotional, I can't write anymore about this day. 

December 24 (Wednesday) It was Christmas Eve and we met the Green family for a luncheon at Lamb's Cafe in SLC.  This was the first year that the entire family was at this lunch and it was so great to see everyone.  While we were driving to Salt Lake, I got a call from Dr. M that my pathology report was finalized and that he'd leave it at the front desk for me.  Knowing that I wouldn't make it back to their offices before they closed early for the holiday, I called Biffy and asked her to get them for me - she didn't even hesitate; that's a bestie for ya.  When we got home, the first thing I did was open my report and the results were the first bit of good news I'd had and the best Christmas present ever - Yes, the margins weren't clean, and yes, there was enough cancer in my lymph nodes to keep me at a stage III.  However, the cancer was only in 9 of my 12 removed lymph nodes!!!  This isn't a guarantee that the cancer hasn't spread to other parts of my body (thus pushing me into the dreaded fourth stage) BUT it is a very positive sign - I was elated!!

December 29 (Monday) The week after Christmas brought more good news - I got my BRCA results back and they are negative!  This means that I won't need to have my ovaries removed and my sisters and Lauren won't need to have testing done.  Yea!!

December 30 (Tuesday) Okay, I have to warn you about this section that I know is going to give my mom a heart attack for sharing... I'm an open book and really don't care who knows what about my life.  I've gotten to the point where I just think "it's a medical part of life - why be embarrassed, just deal with it."  This is a detailed breast reconstruction post so if you're my brother or my bishop or something like that, and feel uncomfortable, and/or if this kind of stuff grosses or freaks you out, then skip the rest of this post.  You've been warned!!

The last day of the year I met my new plastic surgeon Dr. R.  He works out of McKay Dee Hospital but travels to Davis because he and his partner are the only plastic surgeons close by that will do reconstruction at the same time as mastectomy.  When I first met Dr. R, I wasn't sure what to think of him... he was kind of irreverent and came across as a bit cocky.  Matt loved him, so I just chalked my suspicion of him to my discomfort at even meeting with a plastic surgeon.  Every doctor I've met with thus far has been interested in saving my life whereas this appointment was centered on something cosmetic, so his energy and enthusiasm just felt out of place and I just felt weird.  Regardless, I was moved by the fact that he only specializes in reconstruction and Dr. M was very complimentary of his experience, so I just went with it.  

I was leaning towards doing the mastectomy bilaterally just because emotionally I felt like I couldn't handle any more surprises and I also had a benign lump in my left breast that I didn't want to take any chances with (especially since the MRI was off on the right breast).  Dr R. thought that was a great decision, especially since it's easier to achieve symmetry in reconstruction with the bilateral mastectomy.

Just as every kind of cancer is different, everyone's path for reconstruction will be different depending on what treatments they're receiving and/or what body type they have.  In my case, I'm really limited to just about one option.  I'm going to have expanders placed under my muscle at the time of the mastectomy.  They need to be placed under the muscle because if they're next to the skin, then there's a large chance they can be "rejected" by your body.  Since your muscle isn't an organ (as opposed to the skin) there isn't that risk.  After I've healed up from the surgery, I will go in a few more times to have more fluid injected into my expanders to stretch out the skin in preparation for the implants.  They don't want to expand my breasts too much or the radiation won't be as effective.  I'll keep the expanders in place till at least 6 months after radiation is completed - the skin needs ample healing time.  If my skin heals up nicely, they can just remove the expanders and replace them with implants.  If it gets too damaged from the radiation, they'll probably do a skin graft from my back and shoulder area to complete the reconstruction.  Fingers crossed that my skin stays healthy!!!  I will also have the choice of leaving my breast without nipples, tattooing nipples on to look 3D, and/or reconstructing a nipple in addition to tattooing it - I really don't care about any of that right now, it's just a weird detail.  So in another year, assuming I can kill all this cancer, I will have my final surgeries for reconstruction.  

And on that personal TMI note about my boobies (sorry Mom!), I'm going to sign off and head to bed!

First Cancer Post - The start of my symptoms through November

This blog is a long time coming and I apologize for the delay. I have said parts of this story to so many different people that I never know who knows what or even who really cares about what.  I'm sorry to those that I haven't talked to in person about all the details, hopefully this will answer any questions you may have regarding my diagnosis and progress.  Also, don't feel bad if you aren't interested in reading this crap... it's a long, rambling, catch-all post that I doubt I'll proofread, lol.

Middle of September - I scheduled a yearly checkup... I usually use my birthday (August 24th) as a reminder to set up that yearly appointment.  My appointment is set up for the middle of November.  After I got off the phone I thought, "I should do a self breast exam because Dr. F always asks me if I do them and I want to answer yes honestly."  Ha ha, like that one time constitutes regular self exams.  I find a lump about the size of a grape in my right breast.  I'm not worried because I know lumps can be cyclical so I just decide to watch it over the next month.

Middle of October - My breast lump hasn't changed at all despite my body going through an entire monthly cycle.  I've told Matt about the lump after a couple of weeks of no change and he's worried.

October 24 (Friday) - My lump hasn't changed and I'm starting to get a bit concerned, but Matt is worried enough that he wants me to move up my appointment.  He prompts me a couple of times that this should be my #1 priority that day.  I call to reschedule, but my doctor will be out of the office until November 4 - almost 2 weeks!  During this time, I'm not really concerned because I've had many "fatty tumors" in my body and assume it's just another one of those.  I take the opportunity to tease Matt about my lump.  For example, one night we're getting Cutler's cookies and I order 2 for myself, saying, "I've already got cancer, let's just feed it some more sugar!"  or I'll indulge in a dirty diet Dr. Pepper and say something about the aspartame causing my lump.  Stupid comments like that... 

November 4 (Tuesday) - Matt is really worried and he's starting to freak me out.  The appointment line says there are no openings, in fact, Dr. F is overbooked since he's been gone.  I decide just to pop into the office and see if they can squeeze me in just for a feel of the lump.  Janita (the office coordinator/head nurse for Dr. F says he can't see me but she can tell I'm nervous so she invites me back to the office.  She puts me on the cancellation list for Dr. F but then also proceeds to call Davis Imaging to set up an appointment for a mammogram so I can get in to whichever place has an opening first.  Davis Imaging is slammed because October was breast cancer awareness month but Janita can get me into an appointment on the 11th.  This puts my mind at ease and I'm so grateful for her patience with my nervousness; she probably sees stuff like this all the time and it turns out to be nothing.

November 10 (Monday) - Dr. F has a cancellation so I was able to meet with him the day before my scheduled mammogram.  He feels the lump but reassures me that over 80% of the lumps people feel are benign.  This puts me completely at ease again, especially because of my aforementioned predisposition for fatty tumors.  Dr. F also told me I should get an appointment lined up with a surgeon in the small chance that the lump was cancerous.  He told me (more than once) that the surgeon should do the biopsy and not to let the radiologist at Davis Imaging do it, even though they'd try, because it would be best to deal with the same doctor all the way through treatment.

November 11 (Tuesday) - Diagnostic mammogram and ultrasound @ Davis Imaging:  The ultrasound was uncomfortable and cold but not as painful as others had told me it was... that is, until they used a special attachment just for the diagnostic mammograms - holy cow, it was smushy!  After the mammogram I went into another room for an ultrasound.  I was surprised that in addition to checking my lump, the technician also checked around my armpit.  I just assumed she was checking the entire breast for anything suspicious but I was surprised that armpit area she checked was so tender.  She excused herself from the room and told me she was going to get Radiologist to come into the room. Ok, so looking back on this, I was in la-la land or something, because this should have been a red flag!  The sweet radiologist came into the room and introduced himself, then started using the ultrasound equipment as well.  After he looked at things for a bit he had me sit up and asked me a few questions and then proceeded to tell me that he thought I had cancer and asked how I was feeling.  I smiled with resignation and replied, "Oh I was kind of prepared and expecting it."  Except, the thing is, I WASN'T!  He kept talking and said I showed 3 signs of cancerous cells, but the only ones I can remember are irregular shape and an enlarged, suspicious looking lymph node (the armpit area they were checking).  My brain was going a million miles an hour and what he was saying wasn't registering. He said the only way to be 100% positive it was cancer was to do a biopsy and he wanted to do one right then.  When he said that, I started to freak out a little bit more... my trusted OB that I love and that has delivered all 4 of my babies had told me that they'd want to do the biopsy at this place but that I was supposed to wait and have my surgeon do it.  When I told that to the radiologist he was taken aback and questioned Dr. F's advice, telling me that the surgeon would just send me back there to get the biopsy.  Now my mind really started reeling and I started to tear up not knowing what I should do and said I should probably talk with my husband first. The sweet radiologist realized I wasn't as calm as I was trying to portray and told me that waiting another week for the biopsy would be just fine.  He gave me lots of contact #s and reassurance and I headed home.  Matt was out of town in St. George and I called him with the bad news as I drove home.  It sucked.

November 12 (Wednesday) - I had to meet with my PCP (primary care physician) Dr. K because my insurance (Humana HMO) is stupid!!!  An ObGyn is the only doctor besides my PCP that I can go to without a referral.  Even though Dr. F referred me to get the mammogram, the official referral needed to come through Dr. K and he had to see me before he could legally send the paperwork through.  Despite all the insurance hoops Dr. K and his nurse Sherma have had to jump through for me, they have been so helpful and supportive.  

November 14 (Friday) - Matt and I went to see Dr. O for a consult about the biopsy.  He confirmed that the imaging wasn't positive, my lymph node showed a score of 4/5 for suspicion of cancer and my breast lump had a 5/5 score.  Of course, without the biopsy results, there wasn't 100% confirmation so Matt and I felt like we shouldn't tell anyone yet.  And to make matters worse, he does NOT do the biopsy, he referred me back to Davis Imaging!  I was so upset because if I would've done the biopsy on Tuesday when I was there, I would've had the definitive results by now!!  Dr. O apologized and said that he was the one who'd been telling the ObGyn doctors to err on the side of caution... too many people were getting unnecessary biopsies.  This consultation with Dr. O was at the end of the day so when his nurse tried to get me an appointment for a biopsy the coming Monday, the scheduler was out of the office.  DI said that they did have one appointment available at 9:00 that morning but that we'd need to call first thing to get it scheduled before anyone took that slot.  Dr. O promised he'd call on Monday before he went into surgery and that he'd call us to confirm the appointment.  He also talked with us about removing the lump asap - maybe even the week following the biopsy.

November 17 (Monday) I woke up early Monday morning waiting for a confirmation call from Dr. O.  When I didn't get one by the time he'd promised, I proceeded to call DI myself to set up an appointment.  I left three voicemails on varying phone lines but couldn't talk with anyone directly.  Matt and I just decided to head over to the appointment an trust that it was arranged.  When we got there, we were told the appointment was taken by someone else and that they hadn't heard from Dr. O.  We were also informed that we needed another approval from our insurance before they'd even see us.  It was a long morning... I cried, Matt got upset and yelled that he didn't care about insurance, he'd pay them cash right then if they'd get me back for the biopsy.  They took us back into a room, basically just to ease the tension so we didn't upset the other patients I think.  After talking with another gal, who again confirmed they couldn't see us that day and me crying again, the head office manager came in.  We explained the entire story to her and she told us she'd figure out a way for me to be seen that day.  The biopsy didn't take long and wasn't too painful, although my lymph nodes were sore for about a week afterward.

November 18 (Tuesday) Angelina, who is a Cancer Care Coordinator, called the next day to set up an appointment to review the pathology results.  It usually takes a few days to get them back so she thinks they'll be ready on Thursday.  We set up an appointment for Friday afternoon to go over the results.

November 20-21 (Thursday & Friday) I'd previously arranged a getaway for Matt and I to fly to Portland, Oregon to see Justin Timberlake in concert.  We were planning on staying till Saturday night but changed our flight to accommodate our appointment with Angelina.  It was nice to get away from all the stress and cancer talk for a day, although who am I kidding, that's all we really talked about!
I called Angelina on both days to see if the results had come in... nothing yet.


November 21 (Friday) Matt and I are on our way home and we're eating breakfast at the airport when Angelina calls us with the pathology report.  She understandably did not want to give us the results over the phone, but I told her I'd do better if I had a chance to process things before I met with her.  Obviously, since I'm writing this blog, the results weren't good.

When we got of the airplane we got something to eat and then drove straight to meet with Angelina.   She showed me my pathology scores and told me what everything meant.  I was surprised with all the different varieties of breast cancer that were possible - each with varying kinds of treatment.  I honestly had no idea how personalized each person's diagnosis can be.  Angelina talked me through the entire process of what to expect and what doctors I'd be meeting with.  She gave me an organizational binder and even set up appointments with all my doctors for the following week.  It was a big job for her to accomplish, especially since the following week was Thanksgiving, but I think she'd been working on the scheduling earlier in the week since I'd called her so often.  She had actually never worked with Dr. O on a cancer team before, and although she was super careful with what she said and didn't really make a recommendation, we realized it would be in our best interest to change surgeons to Dr. M because he had more experience with breast cancer surgery.  I wasn't worried about switching in the least because I was angry with Dr. O for not scheduling my biopsy and/or getting back to me about it.  Btw, I loved this meeting with Angelina.  I don't think I will meet with her again, but I can't emphasize enough how helpful it was to have someone hold my hand and walk me through things, teaching me what to do and who to contact at the very beginning of the diagnosis.


November 24 (Monday)  Matt took me to get my MRI @ Davis Hospital in the morning.  The MRI machine was intimidating, as soon as I walked into the room, the size of it kind of freaked me out.  The selfie below was taken before I walked out to the MRI machine.  It sounds stupid now, but to calm myself down, I made myself look in the mirror and smile for the picture, thinking that it would make Matt happy to see that I was doing ok.  It wasn't painful, or as claustrophobic as I'd heard, just a pain to try and hold still for the imaging.  There were a couple of times that the technician told me, "now, don't hold your breath, but your breathing is interfering with the scan, so try to fix that..."  What in the heck does that mean - what am I supposed to do?!

After the MRI and lunch, we went to a meeting with my oncologist Dr. S.  The oncologist is considered the "quarterback" of the cancer care team and I think he is fabulous!!  Seriously, I adore him.  I feel like he has the perfect blend of competency and compassion.  While I was there he explained my results a bit more and then told me that I was considered "Stage II B" which has a 93% five-year survival rate - great news!  Before I left, the nurse drew my blood for BRCA testing.  The BRCA gene is rare, but if you have it you've got an over 85% chance of getting cancer in your breasts or ovaries.  I only qualified for the testing (through insurance) because I am under 40 and because my Grandma died from cancer.  The results take about 2 weeks to get back but we wanted to know if I was BRCA positive so we could decide on lumpectomy vs. mastectomy before we had the surgery.

Chemotherapy will be every two weeks for 8 treatments. So, 4 months total.  The first half of the meds will be Adriamycin and Cytoxan and the second round will be Taxol.

November 25 (Tuesday)  I met with the radiation oncologist Dr. H and really like him as well.  I don't start treatment with him till after chemo.  They've got a cutting edge machine called Tomotherapy that is fabulous at just targeting the cancer and none of the surrounding organs (which caused the spread of cancer in the past).  He was very professional and serious so when he told me that they'd be putting tattoos around my breasts as "markers" before radiation and asked if I'd prefer hearts or stars, I totally thought he was serious!  They actually do put tattoos on your body so they can aim the radiation perfectly every time you come in, however the tattoos will just look like freckles.  I have to admit I was a little bit bummed; I was looking forward to the stars!!

Radiation will be every day for about a half an hour.  It will last for 6 weeks.

November 26 (Wednesday) I met with my new surgeon Dr. M, and I'm so glad I made the switch - I love him!  We set up surgery for 3 weeks away so we can have the BRCA results back and make a definitive plan for surgery.
After our meeting with Dr. M, we packed up the car and headed to Las Vegas for Bradley's Thanksgiving hockey tournament.