January 2011 archive
Mike in the waiting room while I was in surgery.
One thing that I learned early on is that there are a number of people that battle cancer alone. The hospital is willing to assign someone to go to your appointments with you and take notes, there are services that will drive you if you can’t get a ride etc. This blows me away, I am a very independent person, but I have to depend on others to get through this or I may just go insane. If you know someone who may be suffering this alone, please reach out and offer to help, no one should go through this on their own. Mike has reached a new level of “take charge” this last week and I am so grateful to have him (and my family) to help me.
Whether it was staying late at the hospital with me sitting in a recliner next to my bed and holding my hand to help me doze off, or make a list of items I am going to need when I get home and running all over town to pick them up and have them in place for when I got home, Mike did whatever he could think of this weekend to make me comfortable. Mike made a schedule the day I got home and scheduled what medications I needed to take and what time, along with tracking drain maintenance (an the amount of fluid drained) and he has handwritten chart of when I have to use the funny thing to check my lung strength (I can’t remember what it is called, but not using it and chest pain caused me O2 issues at the hospital).
Mike set alarms last night and woke me up each time I was due for a pain pill, he wanted to try to keep me ahead of the pain as nighttime was a real challenge for me at the hospital. I was in bed from about 8:30 PM to 10:00 AM – I slept pretty much the whole time. I woke up pretty rested and feeling good! Mike has been taking care of me with a smile on no matter how cranky or difficult I have been since surgery. The house is clean and I have been able to relax and drift off into a nap as often as I can. He has just been downright amazing.
Mike is also staying busy at coming up with ways to sneak food into me. Whether it has been making me homemade flan (can’t turn that down), homemade berry milkshakes, breakfast burritos or something delicious a friend has brought by – Mike has been keeping food in front of me 24/7. I am glad he is staying with me these first few days back at home as we are going through the paces of learning what I can and can’t do for myself at the moment.
Dereck and I are too legit to quit.
Overall I feel pretty good, I get a little nausea now and then and we have kept pain at bay by taking my medication on time (I have even been able to cut back a little bit during the daytime). The main inconvenience is that I am surrounded by drains. I have heard from several women that the drains are worse than the surgery (at the moment they kind of are). I have 5 of them, the shirt I bought to handle them holds 2 – needless to say I have an unusually large number). I read to make a velcro belt and attach them to that. Mike went and got me the velcro to make the belt, but I discovered that all of my button/zip up shirts and pajamas don’t fully cover the drains (too small tugs on them and they hang out below).
After a major wardrobe malfunction this morning (I didn’t have any comfortable tops to wear) I called my little brother who went on a hoodie hunt. The best success he had was the Target maternity section where he got me 3 tops that cover my drains and don’t tug on them (and they actually make me look semi-normal even though I have to get XL and XXL to cover everything up. We decided that with some gold chains and some beanies we were ready to start a rap band (now one of us needs to learn how to rap – but I think they have an XBox 360 game out for that…) Dereck has our first song all planned out.
I will have most of the drains for at least 2 weeks. I am pretty sure I will be well enough to work from home next week, but I will certainly do it from home where I can hide the ickies and be more comfortable. I am supposed to have a check up with one of the surgeons at the end of this week and the next one next week. I wasn’t given a date on when I will get the lymph node biopsy results (and stage number). Chemo is tentatively scheduled for February 25th for my first dose.
You can be jealous of my surgical hat, it is cool.
Surgery is over! You never really know what to expect when having a surgery like this one, as everyone seems to react to it fairly differently. I am not going to lie, it hurt. It hurt less than I expected though, so that was the good part.
Before surgery they draw all over you with a pen to mark the location of where your breasts sit on your body, where your collarbone is etc. Huntsman keeps a leaderboard for all surgeries going on so that family in the waiting room knows what stage you are in in your surgery based on the color of the box and where it is on the board. I am the big pink box on the bottom (I think Mike took this picture because of how long my surgery was compared to the others).
Surgery leaderboard, I won!!!
It also looks like they schedule everything to get out by 5 PM. When I eventually made it to my room post surgery I found my family and a beautiful bouquet of pink roses from my stepdad. They were really beautiful.
Pink roses from Steve.
If you have never been to the Huntsman, they actually have really nice guest rooms and surprisingly comfortable beds. Unfortunately someone is in checking on you about every 60 minutes, so sleep is pretty much a lost cause. Mike stayed until about 4:00 AM the first night, but I finally talked him into going home to get some sleep (seriously, they don’t let you sleep).
The second day some family members were able to come out and say hi. My nieces and nephew had great timing as they got some free ice cream from the kitchen when they brought my smoothie (morphine makes me nauseous, so I wasn’t really up for eating anything solid until they switched me to a different pain medication).
Hanging with my homies.
Flowers from Michelle.
A big, but super pleasant surprise, was that Michelle came to visit me at the hospital! Michelle is the friend that I mentioned in my last post, she has the same doctors and has been a great emotional support through this adventure. She brought a beautiful bouquet of flowers. I was so surprised and excited to see her! It really made my day. She told me I have the first step down, I definitely have a few more to go.
The surgeon removed six lymph nodes. One was bad, one was questionable, and four additional ones in the area. So, I didn’t have to give up too many lymph nodes. We should hopefully have the final staging information next week.
Flowers from Mike.
Flowers from work.
Before surgery we were discussing how strange it seems to take someone who was in relatively good health and make them sick in order to make them better. I know it will all be worth it in the end.
I am writing this as I awaken from anesthesia… eee oooo eeee ooo. Ok, I wrote this before surgery so that Mike could post it for you when I am done with surgery. If this has been posted:
- My operation was a complete success
- I feel like total butt, because anesthesia sucks
- Hopefully they gave me some good pain killers
- Mike loves Mandi more than a fat kid loves cake
Mandi did excellent in her surgery according to her doctors. She is not in much pain which is a very good thing. This should make her recovery easier. We are now in her room waiting for them to drop her off to us. It’s been a long day, and we cant wait to see her. Craig, Barb, Steve, and Dereck have all been here keeping me company and I appreciate all of them very much. I will continue to keep everyone posted as I have more information. -Mike (The Hubby)
My "Rack Pack" from an amazing group of people.
Yesterday a very nice girl named Sarah came to my house, she has never met me before, but she heard from another woman that I have breast cancer. She brought me a care package that was truly amazing. It was a chemotherapy care package that literally included everything you could possibly think of – a blanket, fuzzy socks, mints, snacks, sudoku, thank you cards, a journal, earrings, a cute cancer awareness hat, and a bajillion other things (bajillion is a real number… I swear… good thing I wasn’t a math major). Sarah was from The Christi Anderson Rack Pack Foundation, the foundation was started by friends and family of Christi Anderson who lost her battle with breast cancer February 7, 2010. I offer my condolences to the friends and family of such an amazing woman. Sarah offered me a ride if I needed it, someone to talk to, anything I needed was just a phone call away. Wow, this made my eyes tear up, how amazing that someone I have never met before in my life was so willing to offer her help and support never having met me before. Their message made me giggle was “Check Your Boobies!” I can’t agree more!
Candace from the young survivor sisters had given the Rack Pack my name. I had signed up for this group as I wanted to have contact with other young people who had battled with this challenge before. Candace called me last week and spent an hour talking through some of my fears and concerns. She also sent me a big document about her experience and covered just about anything you would need to prepare for and how to prepare for it. Her timing couldn’t have been better. I am going to try to attend a dinner that the group is putting together at the end of February if I am feeling up to it (I hear I will!).
There is also Michelle, she reached out to me shortly after I started my blog and has been a great support. She has the same team at the Huntsman and has been a kind person to be my “pen pal” while I have sorted through this most surprising experience this past month. It is so nice to have the perspective of someone at the tail end of this process just as I begin it. Especially the perspective of a kind soul (she also was able to calm me down during a couple of moments of sheer panic).
My surgery time on Friday:
- I go in at 8:30 AM, which means I will probably actually be in surgery around 10:30 AM-ish
Mike will post surgical updates to http://www.facebook.com/darngoodlemonade as he gets them (they said that nurses will call him during surgery and give him updates). You don’t have to be on Facebook to check it, the page is public.
I called and got the PET/CT results, the showed cancer in my breast and lymph nodes (she said nodes plural, so I am going to assume they saw a couple more or so). I have a cyst or something in one of my vertebrae (makes me wonder if that is why I pull out my back super easily), and I have some brown fatty tissue – whatever that is – but it sounds gross.
Last but not least, my hair:
The hair that once was and is no more.
The hair that is.
P.S. I added mobile theme so that those trying to view my site, but couldn’t read it on an Android phone, you should be able to read it now.
P.P.S. I am getting a priesthood blessing from my father, brother, uncle, cousin and other family members tonight.
This also marks the beginning of my “radio silence” until I know I can/feel like typing. If I get to darn antsy I will dictate to Mike and have him update.
My new t-shirt, it even came wrapped in lemon wrapping paper.
I had my early morning meeting with the plastic surgeon that went pretty much how I expected, but not now I had secretly hoped for. I knew that radiation could throw a wrench in the easier breast reconstruction. In order to be able to keep my body from rejecting the implant and running into further complications with the stitches I have to have a more intensive surgery. Radiation does too much damage to the tissue – so they have to add something else to add blood flow to get it all to work correctly.
I will be having a Latissmus flap reconstruction similar to my Aunt Lalove’s reconstruction. The will take a muscle from my back and burrow it around into my breast (leaving the back of the muscle attached), and place it in front of where they put an implant. They will also borrow some skin from my back (and leave a straight line scar on my back along my bra strap line). The use the skin for the incision area as the radiated skin won’t stretch or heal properly. All of this is used to keep the blood flow to the front of the breast (which is important to keep your nipple healthy and happy). Essentially, the easier happier recovery from reconstruction is toast, and my likelihood of symmetry is also less. This is pretty much my only option is I don’t have much tissue lying around to make new boobies, and I need tissue to get it to work properly. I was pretty bummed to hear the news, but I knew from my aunt’s experience that this would be the case once radiation was added to the mix.
This was on the door to the room that they injected me with radioactive tracers.
It is commonly known that radioactive materials are well associated with the development of super powers and heroes. They can now make comic books about me, injected with radioactive dye and BAM super powers. Not sure if I get flight or the xray eyes, but I will be sure to let you know when they develop!
I was able to get in to my PET/CT scan a little earlier in the day than I was originally scheduled because an appointment was canceled. This process involves being taken to a room where they inject you with radioactive sugar. A good explanation of how the PET/CT scan works lists that how it shows tumors is that:
Metabolically active organs or tumors consume sugar at high rates, and as the tagged sugar starts to decay, it emits positrons. These positrons then collide with electrons, giving off gamma rays, and a computer converts the gamma rays into images. These images indicate metabolic “hot spots,” often indicating rapidly growing tumors (because cancerous cells generally consume more sugar/energy than other organs or tumors).
This makes spots that the doctors can see to locate metastatic tumors. I kind of want to see the pictures when they have them available. They look kind of cool. After the injection I had to sit quietly in a room for 70 minutes and drink two huge “fruit smoothie” barium sulfate beverages. The placed me in the CT scan and I had to lay completely still for over 25 minutes. All of the not eating and fancy smoothies has left me sitting home feeling a little funky.
I believe they will call or set up an appointment to discuss the results. In the meantime, I am seriously waiting for my super powers so I can know what color of cape I need to buy (maybe Laura will sew it for me).
Speaking of Laura, my happy for the week is that Laura finished the quilt she made out of my wedding dress! She came in Monday with a beautifully wrapped package, I was super excited to see how beautiful it came out. She is one super talented seamstress!
The wrapped package.
The quilt made out of my wedding dress!
What the wedding dress used to look like.
Mel and I getting pedicures.
I called the weekend before my surgery the final “hurrah” before I started the “kick breast cancer in the butt” process that begins with surgery the following Friday the 28th. Friday evening Mel and I went to go get a pedicure (which I heard is a bit of a no-no when you are in chemo, so I had to get that one out of the way! Mel was sweet enough to treat me to a relaxing evening getting leg massages and colored toes. I swore I wouldn’t do pink, but none of the colors were really popping out at me so I decided to go PINK. After that Mike made a huge pot of spaghetti for all of the friends and family at the house before we headed out to a bar named “The Woodshed.” Where we had a few beverages (maybe just a few too many ).
I wasn't going to go pink, but I ended up going PINK.
Saturday Mike and I slept in pretty late as lately we actually haven’t really been able to sleep or sleep in. Once we got up Mike asked me what I wanted to eat and I decided that I wanted “the works” french toast, bacon, sausage and hash browns. Mike was happy to oblige, my mom and Steve got there just in time to join in on the big brunch. I spent the afternoon reading and relaxing when I discovered that Little Big Planet 2 had come out (we had been waiting for this game to come out for a long time and sort of missed watching for the date with everything going on).
Me, Kim and Scott hanging out at The Woodshed.
Mike and I went and bought the game and did some quick grocery shopping because I was craving chicken noodle soup (one of my comfort foods). I made a huge pot of soup that we shared with mom and Steve. The leftovers went into single serve size bowls that I froze so that I have some easy home cooked food to grab if I wanted it after the surgery. We spent the rest of the evening playing Little Big Planet 2 (it is one of those games that makes you giggle a lot because of all of the silly stuff they put in it).
Sunday my good friend Julie came to hang out with me during the afternoon. She is my good errand buddy as she doesn’t mind running errands with me and keeps me up to date on girl chat. Brian, Michelle and baby Morgan made us dinner tonight so we were able to relax at their house and watch a movie. We came home to a completely tiled bathroom (and the cleanest I have seen our house in a few weeks)! Yay, just grout, seal, caulk and putting in the rest of the stuff. The worst part is over!
Bathroom is all tiled (including the floor which has a box on it).
Joan scheduled a special appointment for me Thursday afternoon to go ahead and cut my hair short. I have had super short hair in the past – so this won’t be a completely new experience for me. I wanted to see if I could give the hair to Locks of Love, but my use of bleach on my hair in the past makes it unusable (good FYI for those that are ever interested in donating their hair).
The "you have cancer" book.
Mike went to stores all over the valley to find a Kindle for me (it has been on my wish list for a long time). After driving to 3 different Targets (Best Buy was all sold out), he was able to grab the last on that one of them had in stock. I bought a messenger bag that will fit my laptop, Kindle, “you have cancer” book (that is what I nicknamed the handy 3 ring binder that the Huntsman uses to put educational information, lab reports etc. in so that you have all of your information in one place). A change of clothes, snacks and other random things I will discover to be handy to keep around during hospital visits.
Next Appointments on Tuesday the 25th:
- Appointment with plastic surgeon to determine my reconstruction options/plan for surgery on Friday
- PET/CT scan Tuesday afternoon (I don’t get to eat all day before this one, boo)
Making sure my heart makes good "beep beeps"
I adored the oncologist team up at Huntsman Cancer Institute. They really finally sat us down, and gave us real answers with real options. I have all of my lab and pathology reports in my binder now. The team met about me this morning, the team consists of my oncologist, surgeon and other experts in breast cancer treatment. They determined my treatment options.
They laid out two breast cancer treatment options (two kitchen sinks):
Surgery now > Chemo > Radiation >Tamoxifen
The benefit to surgery now is that I would have it done and would know what stage I am at. I would also have my expansion done before the summer.
Chemo now > Surgery > Radiation > Tamoxifen
The benefit here would be that they could see the physical impact of the chemo treatment on the tumor before surgery, but they wouldn’t know the full extent of my cancer as they may have killed the cancer in more of the lymph nodes before they take them out.
The big issue that came up this week is that the cancer that showed up in the area of my lymph nodes was grade 3, which is the very aggressive cancer grade (the grade in my breast was grade 2). So I have a higher risk of having cancer cells in other places that they should not be. All of the cancer cells I had were estrogen (90%) and progesterone (70%) positive, the Her-2/Neu was negative (which means I won’t need herceptin, which is a great treatment for that, but also rough on your heart). I will be given Tomoxifen for the next 5 years to block estrogen receptors in cancer cells.
They told me that my choice on which order I go is entirely up to me and the impact on the final outcome is 50/50 (shouldn’t make a difference based on whichever). I started to sway towards starting chemo now – as that was the option and it would be nice for them to know how much the chemo killed the cancer knowing that it would have gotten any stray cells.
I bought my first hat for chemo!
We scheduled me out for chemo and planned it all out and it suddenly came to me: “I don’t want a big surgery in the middle of the summer!” You have to wear drains for several weeks and the breast expanders would be much more uncomfortable in the summer as they would be brand new. I would rather be worn out, but more comfortable at least riding on our boat this summer rather than toting around drains and dealing with expansion. So at the last minute I changed the treatment back to having surgery first so that I can hope to at least get out a little more this summer.
I meet with the plastic surgeon Tuesday morning, hopefully he can give me the real low down on what radiation will do to my reconstruction options, so I should have more info then. I am also waiting for them to schedule my full body CT scan to double check for tumors anywhere else in my body. I had an electrocardiogram so that they have a pre-chemo recording of my heart function.
A prescription to buy a wig!
They did plan out my chemo – with the current data that they have, I am scheduled for 16 weeks of chemo going in every other week. I get what is called Dose Dense AC Followed by Dose Dense T. My personal cocktail will be Adriamycin and Cytoxan for 4 times (once every other week over an 8 week period) followed by Taxol 4 times (once every other week over an 8 week period). Both will cause hairloss, thus I have my very first prescription for a “Cranial Prosthesis” which means a wig, so it is time to go wig shopping. They also suggested that I get a much shorter haircut in the next few weeks in order to get accustomed to having less hair (making the hair loss a bit less of a blow I guess).
My mom and I went to Carol’s Post Mastectomy Specialist and bought a special top that you use after surgery that helps manage the drains (and I learned that it is covered by insurance!). I also bought my first hat! Pictured above. The ladies there were so kind and a customer that came in was diagnosed when she was 30 over 30 years ago, she said a few kind words. They were amazed at the option that I have for surgery, I am glad that I have such a great team at Huntsman.
I start chemo 4 weeks after surgery, and then a few weeks after chemo I will go on to get radiation (no luck on getting out of that one eh?).
The Mandi Chair
It appears that I have been assigned to the high risk breast cancer team at Huntsman – the Oncologist I was assigned to, Saundra S. Buys, is the Director of the High Risk Cancer Clinic. This has left all sorts of questions floating around in my brain. I tried calling the nurses this morning. They hadn’t responded to my email request for the hormone receptors on my cancer cells. I left them a message.
This led to the following questions (I just got the phone call with the answers):
- Did my genetic test come back? No
- Is there something about my tumor that I don’t know? It is ER Estrogen positive (90%) PR Progesterone positive (70%)
- Did the biopsy of the lymph node come back with further information? Yes, the cancer is definitely in my lymph nodes. I will have a CT and several lab tests for staging tomorrow. I may start chemo super fast at this point.
- Am I going to have to have chemo before surgery? The answer is most likely yes, pretty much for sure. Most likely my surgery will be canceled. I am not sure what this will mean about my reconstruction options.
- What does this mean about my stage? Let’s not think the unthinkable, but I am not in a super happy zone of easy recover (not that recovery is ever “easy”) I believe the terminology used related to my treatment involved the words “kitchen sink.”
From my understanding of today’s conversation the doctors feel like waiting to start the chemo for another 3-4 weeks it would take to recover from surgery is a risk they aren’t willing to take. This also means they will know how much the chemo had an impact on the originating tumor before they take it out.
Laura, the quilt pattern and my wedding dress (in bag).
I don’t believe I noted that we managed to get a major snag on a black leather recliner that matches our couches off of KSL.com for only $75! It is incredibly comfortable and it fits me and two dogs comfortably (chairs that don’t fit the dogs and I, tend to end up a bit crowded because they decide they are going to sit by me no matter how uncomfortable it is). I have already taken over the “Mandi chair.”
Now for my happy thing this week. Laura, who is on my paid search team and a super awesome employee at work, has been finagled by me to make a quilt/wall hanging out of my wedding dress. She did it with her own dress and I thought it was a great idea! Otherwise the dress just sits in my closet taking up space – and I am fairly certain that it won’t be hand me down material as tastes change significantly. I think everything going on has made me a bit more sentimental and I really think a nice piece of art made out of my dress would be lovely to have on the wall and to someday pass on to family members as an heirloom. I am seriously super excited about this! Laura has an Etsy site: http://www.etsy.com/shop/happystitchesbylaura she does super cute baby car seat covers if you are interested.
I will update when I have the energy to do so, or talk Mike into it. Tomorrow is going to be the long day of preparations for the kitchen sink. I wonder if they will be ok if I start throwing lemons at it?
I like this ribbon better. (OMG! Laura is already working on my dress)
Here I stand in a billowing gown of Huntsman oversized goodness.
It is strange to be excited about an appointment at Huntsman! Even though I get super jittery a couple of hours (or for the day before, depending on the appointment). Appointments mean information and information means progress.What I need right now is feeling like we are making the baby steps to recovery. Progress and information have been a blessing and a curse. Knowing is so much better than spending many hours “wondering.” I have a bit of a wild imagination.
Today I went in for a breast MRI (an entirely new experience for yours truly). They were a bit backed up, so we waited an extra 40 minutes to get in there. The nurses and staff were super nice while they placed me laying down with my breasts flapping in the breeze. The outfit that they gave me was the glorious one size fits all in a lovely baby blue, with white and gray accents.
The nurses called the scheduler today to let me know that she needed to get me in to meet an oncologist. This threw me a bit off as I had understood that I would not meet an oncologist until after my operation. This made me slightly nervous for good or for bad as my path was surgery, then chemo, and then possible radiation they could be switching me to chemo than surgery (chemo can be done before surgery if there is concern about the cancer spreading sooner and further, it is also using on occasion to shrink down the tumor before they pull it out). Who knows if it means anything more than they decided to get me working with the oncologist early. I am hoping that is where I get the details on whether or not I officially have a hormone receptive cancer (and which one for sure!). I am also expecting the results from the biopsy that I thought I would get today, my gut knows the answer, but it can’t quite sink in properly without the official word that says it is what is seemed like it was (essentially that the cancer has spread to lymph nodes and possibly more -> worst case scenario).
It sounds like I need a CT scan to get the idea if it has spread, but I am making assumptions based on what I can find on the internet. I am ready for a little more Mandi centric information/life planning overload right now.
So, yes, an uneventful visit (unless you count the fantastic fashion statement I made today). Hoping for more based on my email request for the hormone information, lymph node biopsy results and results from today’s MRI.
Now that we know how much time we have until “S” day (surgery day), it is actually a bit more relaxed for me at home and at work. Rather than planning on possibly being out of the office I know when I will be, and rather than not knowing when we should have the bathroom done and the house scrubbed, we have a date.
I haven’t changed my mind about which surgery, each time give it much thought I feel like I made the right decision. The surgeon sent me home with a hardback picture book that walks through each graphic detail of each step of the “total skin sparing mastectomy.” I know I will lose feeling completely, but the look and the decrease in stress over the rest of my lifetime are so very going to be worth an extra week or two of recovery.
My little brother Dereck bought his first home this weekend (I may be just a bit jealous because it is new and doesn’t need remodeling (I think the last 5 years of working on my house influenced his “buy finished” vision). I decided Saturday that I would try for the “thoughtful” gift (hopefully he doesn’t hate it) I painted him a new picture for his condo. I tend to be bad about getting paintings out for those that request them, but I thought it would be nice to get one done for his new place as it is always hard to find the right things to hang on the wall.
I used to think I was going to be an artist when I grew up.
The black sun has always been a way I represented myself in my paintings since my early teenage years, in fact I have a tattoo of a black sun on my back for this reason (some people may call it a “tramp stamp”). I opted to integrate it in this painting so that my little brother always knows I am looking out for him no matter what (this is not being dramatic, I have always tried to look after my little brother, which means he is more often looking after me, but either way there is a “piece of me” in his new home). The painting is sitting on my glass coffee table with my rug under which clashes a bit, hopefully it looks better on a wall.
Mom tiling, again.
My mom and Steve have been back at the bathroom. My dad was able to stop by and say hello for a moment (my nephew’s birthday party was today and he was able to help Dereck get moved a bit). Hopefully we can get my mom out of the house and in bed at a reasonable hour, but there are no guarantees if you know my wonderful and stubborn mother. The bathroom is really starting to take shape, it is going to be a lovely oasis. We were going for a bit of a spa/escape flavor in our color and tile selection. My mom had a vacation scheduled for next weekend and I couldn’t talk her out of canceling it. Hopefully they get their own escape soon. It has been an interesting time for all of us.
We are running off an celebrating our friend’s birthday for the rest of the evening, and then our favorite baby’s 1st birthday party is tomorrow!